Backblog

Physical Therapy yet again

2008-05-12T19:08:00.003-05:00

I'm back for yet another round of Physical Therapy. Those of you who know me know that I am not crazy for PT for a variety of reasons.

So I had my first appointment last Tuesday. The therapist was nice enough, but not nearly as aggressive as I'd like her to be with the massage. I hadn't been to acupuncture for a few weeks and I was needing those knots to be worked out; her gentle massage just didn't cut it for me. Then, and this is really weird, she gave me the heat pack at the end of the session (don't they usually do that at the beginning, to warm the muscles up to work them?)and to top it all off, she put this huge heat pack under my shoulder so I was laying on top of it and all uneven. It really threw me out of whack and I hate myself for not opening my mouth sooner but she was with another patient and I didn't want to be a noodge. I had sciatica all the way home, I think from being all out of whack and not laying flat. I'm telling her not to do that again when I have my next appointment tomorrow.

Had another follow up with Dr. Bartoli. She (and her med student) did a nerve function test on me and, thank goodness, all is fine with my nerves. She thinks the numbness and "funny bone" feeling in my fingers is from the muscles in my shoulder and thoracic region not pulling their share of the weight so to speak and putting pressure on the nerves that affect those parts. I also got a few blessed trigger point injections, which never fail to please.

Saturday's Acupuncture Appointment

2008-04-14T06:24:00.005-05:00

I had my acupuncture appointment on Saturday. They didn't do the trigger point releases, and I was really disappointed. What they did do was check out my arms, specifically my left one where I'd had the "tennis elbow" surgery, and put needles in there. I don't know if it was anything they did, but the pain in my thoracic region was worse and I had pain running down my arm all weekend.
The pain in the arm went away, and I'm wondering if it was just something that they released that was working itself out or what. I don't have appointments for the next two weeks as the students are graduating, then I go back in early May and I really hope that they bring back the Pain Clinic then or that I have no need for by then!

2008-04-06T12:16:00.004-05:00

Legs!

Went to the Tartan Day parade yesterday with some Flickr friends. I still get the same old pains in my legs after being on my feet for a good 4 hours. Maybe I expect too much and everyone my age *cough cough* feels this way? Still, after four hours on their feet, my buddies were heading off to walk another twenty blocks to stand in another bar, while I headed off to the subway.

I don't take pain meds for this type of pain, I'm kind of used to it by now. Yesterday I took 200 mg of Neurontin, which doesn't so much help the pain as calm me down and take my focus off of it. Any kind of pain generates a bit of anxiety as I'm worried that I'll go back to pre-surgery Elvis-like pain levels. I know better; those days have really and truly "left the building" but sometimes I am afraid of ghosts.

In related news:
I had my last appointment at the pain clinic on Tuesday, and it was a rip-snorting, muscle releasing success. I'm very sad to see the clinic end, but I'm hoping now that I go back to the Saturday appointments, they can and will do the same type of treatment.
I have my second Alexander lesson on Wednesday night.

Alexander the Great

2008-03-29T18:58:00.002-05:00

I had my first Alexander lesson on Friday afternoon with Nanette Walsh. I was really impressed with her; she was intelligent and really knowledgeable on physiology and anatomy and able to explain why she was asking me to do what she was. Plus she had the sweetest old dog named Harley who lay in the room with us, and came up to observe when we were standing up, like some kind of canine consultant, sniffing at my pant legs.

So the first thing we did as soon as we got into the room was “chair work.” She immediately had me stand in front of a straight backed, hard chair and she positioned me to correct way to prepare to sit. For me, it’s all about not having your chin jut out and tightening up the next muscles when I engage my back muscles to prepare to sit down, or stand up.

Then we went to the table and I lay down on my back with my knees up. She also place three small phone books (like the ones we get in NYC for just one neighborhood) about three inches thick total under the knob at the back of my head. My neck was just sort of suspended but supported. She explained that the books are to help keep the top of the head pointed forward, up and out. Adjustments were made to my shoulders and lower back to allow my body to spread outward. Nanette explained that that is the whole idea, for the body to spread out.

We also spent a lot of time on my breath. I’ve done my fair share of yoga and meditation and I was always taught that it’s best to blow your belly out when you take in breath, sending it to the small of your back and abdomen instead of just the chest. Nanette explained that for someone like me who has trouble with tense muscles in my neck and shoulders, it’s important to fill all the way up, and of course, out.

So now I’m practicing my “chair work,” and today I lay on my yoga mat for 10 minutes trying to “direct” my body to spread out. Nanette made sense to me, and I think after about a month or so of living with this new information, I’ll go back for more.

Here’s some information and a bit of history on the Alexander Technique. If you have back problems, it could be worth a try.

Pain Clinic Redux

2008-03-21T06:22:00.005-05:00

Well, it just keeps getting better and better. Last Tuesday, I had a different set of students again and I have to say, they were the best yet.

Everyone up to this point has trying to get the big knotty muscles in my back to "release." No one has been able to do it. I had one set of students tell me to get ready for it, then it never came, what a letdown. This week was different; this week I had so many releases going on I felt like I needed a cigarette afterward.

They started with my calves. I usually get needles there, but whatever they did with the needles this time caused a small electric shock to run deep through my muscle, building up until it exploded in the most exquisite pain, my calf was twitching and jumping and quivering uncontrollably. It was the most delicious release; meanwhile, I'm gasping and moaning with it and there's only curtains in between me and the other patients in the clinic and I'm feeling like I should apologize for making so much noise but the student practitioners say that that is what is supposed to happen and I'm doing great. I'm sure it sounded to anyone else who may not have known what to expect from acupuncture that I was getting laid, and how, in there.

They did the same thing to my other calf, more moaning and yelping from me. They did it to my back, my shoulder and neck, all followed by paroxysms of pain/release from me. Wondrous.

I have had mucho pain relief this week, though I'm a bit sore in the neck area, as that was the worst/best orgasm, er, I mean release, that I had. I haven't been back to the gym yet, partially because I don't want to strain or tax those released muscles too soon, also this flu thing is lingering like a bad odor and I'm very tired. But needless to say, I am really looking forward to next Tuesday.

Snap, Crackle, Pop!

2008-03-02T15:12:00.002-05:00

Last Tuesday at the Pain Clinic was interesting. I had a different team of "practitioners" who had needles in some different places than the previous team. I'm not sure which set of needles did it (they had some in my ears, and in my calves, in addition to the ones in my ankles and hands that I get every week), but something unleashed some kind of chi because I wasn't able to sleep very well that night and ever since I've been kind of "energized" to say the least. I'm feeling kinda snappy and getting lots of stuff done, but not sleeping too well. I also had the most pain relief that lasted the longest since I've been getting acupuncture. Go figure.

I'm now noticing that when I move in certain ways that engage the newfound flexibility of my lumbar region, there is a distinct popping, crackling or crunching sensation. I wonder what this is? Is it the actual ProDisc or is it just that the new range of motion I have down there is causing the muscles to crunch around?

I'm kind of liking it, I have to say, the snap, crackle and pop of my newly flexible L5-S1 and my mad flowing chi.

Pain Clinic is aptly named

2008-02-06T07:50:00.000-05:00

Last night I had my first visit at the TSCA Pain Clinic. It's different from the regular appointments that I have on Saturdays, as they really pinpoint the places that hurt and try to directly relieve the pain. Ironically, it's by causing more pain.

Well, pain is a relative term here. The discomfort, pressure and heaviness that I felt I was supposed to feel, according to them, as the needles were "releasing" stuff in my muscles. I was very sore when I got up from the table and am still a bit sore this morning, but the big knots that were working on seem to be smaller in size. Yay! I have two more sessions with them in addition to the regular Saturday appointments, so let's hope this continues to improve.

More Prodisc drama

2008-01-30T17:12:00.000-05:00

More on the Prodisc lawsuits, and Dr. B is quoted. For some reason, this doesn't bother me; I figure if they've got some financial investment in seeing that a surgery is successful, then the chances are better that it will be. There's probably all kinds of things wrong with thinking like that, but there you have it.

Pins and Needles, Needles and Pins ...

2008-01-28T08:06:00.000-05:00

I had my first acupuncture appointment last Saturday and I go back again this Saturday and several Saturdays after that. My unsurance, Oxford, only partially covers alternative treatment so my co-pays at an "approved provider" would have been either 70 or 90 dollars a pop. Instead, I opted to go to the Tri-State College of Acupuncture, located near me at 14th and 8th Avenue.

There were a bunch of us sitting in the waiting area, and of course I'm wondering how many of these people are ahead of me for a nine thirty appointment. Turns out, the class lets out at that time and we all get teamed up with a pair of pin-pushers and go to the back. I had an Asian guy who looked like he was ready for his close up, nattily dressed and all officious in his white coat, and a Russian or other Eastern European woman who seemed disappointed that I had so many scars.

They talked to me for a long time, asking all kinds of questions about how I was sleeping and if I had any digestive problems, etc. It was kind of depressing to have to rattle off my list of stuff that's wrong. The clicking in my hip, the pain in my neck, the occasional sciatica, the leg pain, the acid reflux, the two surgeries on my arms, the sinus surgery; it was such a litany that I decided not to even report the biopsy that I'd had on my right breast two weeks ago and that was still seeping blood.

They called in their supervisor, a Chinese lady with an accent so thick I could barely understand her questions. Mostly what she was saying was "better?" when they stuck me with a needle or pressed somewhere.

I had needles everywhere. My arms, ankles, knees, and that was just the front side. They had me flip over and did the same thing to my back.

I can't say that I felt all that much better afterward, but they said it's an ongoing thing, so I might not feel anything for the first few treatments. They also have a pain clinic on Tuesdays that they recommended to me in addition to the Saturday appointments.

It seems like this is going to be a life-long thing with my back.

I have to say, I was looking forward to being pain-free for at least a little while, but a few months into my recovery from the low back surgery, the upper back and neck starting getting painful. When I discussed the upper back pain with Teresa at Dr. Balderston's office, she told me that the cervical disc replacement surgery was a lot easier than the lumbar. Okay.

I have high hopes for the acupuncture.

One year later

2007-12-14T17:41:00.001-05:00

One year later, originally uploaded by Ingrid!.

Today was my one year follow up. In some ways, it's hard to believe that it has already been a year, and then some times it seems like ages ago.

Pix of scars to follow.

Cortisone shots SUCK !

2007-11-09T18:39:00.000-05:00

Big time.

I barely slept Wednesday night either. I'm not looking forward to the next shot, but at least I know now how to prepare. Dig out the anxiety meds and dose up trying to calm down.

Neck blog?

2007-11-06T08:01:00.000-05:00

Yesterday I got the first of a series of cortisone injections in my neck. I had a MRI a few weeks ago that showed my C5-6 was bulging and also that the hole that the nerve goes through had narrowed, causing the worsening pain in my neck and upper back and shoulder. The lidocaine she used to numb the area before the steroid was nice, I had a pain free neck for an hour or so. Then it wore off. My neck was a bit stiff, which they'd warned me about; they also warned me that the cortisone might make me a bit "jittery," like I'd had too much coffee. That was an understatement.

I did not sleep A WINK last night, and my heart and mind are still racing. I'm due for another shot next week and think I'll ask for a sleeping pill on my way out! I sure hope this helps with my neck pain. Hmm, maybe I'll change the name of the blog to "A Pain in the Neck." What do you think?

10 months post

2007-10-12T13:14:00.001-05:00

10 months post, originally uploaded by Ingrid!.

Ugh. Everyone says the scar looks great, and it certainly does look better than even a few months ago, but I can't get used to it. I guess it's a small price to pay for the ability to stand up straight!

On another note, I'm being interviewed tomorrow morning for the Arthoplasty Patient Foundation's DVD. Yay!

2007-10-01T06:20:00.000-05:00

I'm going to be interviewed on October 13th for the DVD that the ADR patient foundation I linked to here is producing. Yay!

I'm excited of course to be able to tell my story, but more importantly, this DVD will be used for patient education and will be distributed to spine centers all over the country.

Did you buy the stock?

2007-10-01T06:16:00.000-05:00

Synthes keeps going up!

ADR Support group now a Foundation!

2007-09-20T17:08:00.000-05:00

Here's their latest update. Kudos to "Harrison" aka Richard Longland, who started it.

"As fall is almost here, I wanted to update you on important issues that I’ve spent time working on this summer. Forgive me, but this is a long but important message.

Insurance Appeals. The overwhelming majority of our members have suffered through the insurance appeal process. While many fight aggressively against their insurers with frenzied letter writing, few patients engage their state Insurance Commission or Offices for Patient Protection (OPP). If you engage the OPP, an independent third-party consultant will review your entire appeal. In the state of Mass., there was only one appeal per year filed with the OPP! One case was even overturned against Blue Cross Blue Shield! Using the FOI Act, I reviewed all the cases submitted to the OPP since 2004 and was shocked by the small number of cases; as well as the variability in appeal formats and judgments (next topic).

NAIRO. The National Association of Independent Review Organizations defines the methodologies that independent third party reviewers use to assess the legitimacy of your claim. After I reviewed the patients’ appeals from the OPP, I was very concerned about the differences among them -- in the formats and outcomes –- and also:

The scientific papers cited within the patient’s appeal;
The papers that are cited by the “experts” hired or employed by the third-party reviewer (as described in the reply to the appeal);
The medical professionals that are chosen to be part of the review process.

Accordingly, I engaged the president of the organization who has been kind enough to review my concerns. Hopefully, this will start a furtive dialogue that will lead to instructive changes for us patients!

Insurance Mandate. There have been a few ADR-friendly changes with insurance companies policies, but we still have a long way to go. Working through my state representative, I am planning to plead our case at the state house. The goal is to create a bill (or some kind of strategy) that requires insurance companies to cover FDA-approved arthroplasty procedures.

While this effort may be good, I have no misconceptions about its chances. Of the 6500 bills that were heard, 50 made it through the lengthy process of reviews (.7 %)! And as of this writing, there is a 16 month backlog. Nonetheless, nothing ventured, nothing gained!

Fundraising. Most spine patients are in dire straits, afflicted by pain and a litany of other troubles that accompany a disability. Few have the dollars to spare for donations, which is why I don’t like asking for handouts! So perhaps you all may consider “plan B”… getting your employer involved!

You may be wondering how this could work. Well, whether your company is large or small, here’s how you and your employer could help:

Some companies will match your tax-deductible donation to a non-profit charity (we are now a 501 c 3 with official IRS status). Even if your company does not have this official policy, some will still match your donation – just ask your CFO, controller of financial executive.

Many of you work at Fortune 500 companies, which are more familiar with making donations to charities. I’ve created a presentation and grant request specifically to solicit donations from corporations, and I can present via Internet or in person to the potential donors.

If you were out of work because of your spine problem and have since returned, you can be a real champion for our cause. All I need is an introduction from you to get me started! Email or call anytime to discuss our next steps.

Quick Survey. Many of you have already seen the simple one-question survey I posted asking patients about how many of their spine levels are problematic. The results are both sad and revealing, as it shows that many people have serious, multi-level disc disease. Please take the survey at your earliest convenience.

Spine Pathologies. Some of you may have seen the recent posts discussing pathogens possible role in disc diseases. In the survey topic mentioned above, I posted an article “Modic changes, possible causes and relation to low back pain,” which is interesting on so many levels (pun intended). This article implies that more specific diagnoses of spinal problems could lead to other (and arguably more effective) treatments. I was particularly happy to see immunological conditions singled out and discussed with specificity. I hope we see many more scientific research and papers in this area.

Candid Camera. Actually, high-definition camera…is coming to you! If you live in the northeast, I’d like to get your candid thoughts about the entire patient experience – or what I sometimes call the “good, bad and the ugly.” These video interviews are primarily for patient education, but I believe that patients will reveal interesting insights appropriate for a diverse audience. This high-quality production will be made available in 2008 as a DVD for purchase. Would you like to be on candid camera? Drop me a line or an email!

I hope this communication was informative. Please feel free to email me or reply in this topic on the discussion board. By the way, “Harrison” is my screen name, my actual name and contact info is below.

Peace to you and your family. Thank you.

Richard J. Longland "

_______________________________

Yo! Buy this stock!

2007-08-12T07:13:00.000-05:00

Synthes is doing great, and so am I!

Another ProDisc Success Story!

2007-08-06T12:00:00.001-05:00

Read it here.

High Heels for the first time!

2007-06-25T10:30:00.001-05:00

Went to a wedding this weekend and I wore heels for the first time in at least a year and a half! Here's me in the church bathroom in 'em.

Here's another shot outside the church.

You can't really see it here, but there was an older woman standing by the curb who had a cane. Last year that would have been me. Hell, just over six months ago, that would have been me! Even though I'm paying for it now, I'm so happy to be the one in heels and not the one with the cane.

2007-06-16T15:31:00.000-05:00

Here I linked to an article in the times that discussed Medicare’s decision not to cover ADR surgery in patients over 60. As it turns out, this is not good news for ANYONE needing ADR, and possibly even fusion. Here’s why.

During my last check up, Theresa mentioned that the pace of their surgery schedule has really slowed as many/most insurance companies are now not paying for the type of surgery I got, that is, ADR combined with a fusion. They’ve narrowed the range of what is covered by adding the stipulation that there can be no other existing conditions, so if a patient needs ONE disc replaced and that’s it, ok. People like me who needed a fusion and a new disc would be shit out of luck. Thank goodness that I got my surgery when I did, as I can’t even think what the outcome might have been if I’d had to wait for even a few more months.

On top of that, I’ve been reading with interest the health care proposals of the three leading democratic presidential candidates (Clinton, Obama, and Edwards). They all seem to include/favor the formation of some kind of “institute” that would research the most effective treatments for the most common (read:expensive) health care issues.

From the NYTimes:

"Along these lines, the three leading Democratic candidates have quietly come up with nearly identical ideas. Deep inside their health care plans, Mrs. Clinton, Mr. Edwards and Mr. Obama have each called for the creation of a national institute to figure out which kinds of medical care actually work. This institute would sort through the scientific research on, say, spinal fusion and help people understand when it may make sense and when it’s likely to be just another big medical expense that doesn’t solve anything."

As back pain is one of the major health care costs, lumbar fusion and I suppose ADR, though the article didn’t specifically mention it, would be researched for their efficacy. Apparently there are some studies that show that fusion is, in some cases, no more successful in treating back pain than other methods. While this is true, and I'm not advocating that anyone and everyone who requests a spinal fusion should be able to get one, I am afraid that the insurance companies will seize on any study that supports a conclusion that means they don’t have to pay for a procedure. The Times article goes on to state that Medicare and the insurance companies would then use the research to “determine when a procedure or a drug would be covered” (read: they’d use the research to deny coverage).

Of course, this is all just my opinion, and wouldn't it be nice if I were proven wrong, but if there's anything I've learned in the past year or so, it's that insurance companies are pretty predictable when it comes to cutting what they cover and putting more of the insurance premiums we pay into their own pockets.

XRays- Six Month follow up

2007-06-12T17:46:00.000-05:00

Oh, of course he comes in the room and goes straight for the xrays, saying how fantastic they look (nothing like patting yourself on the back, there, Dr. B). Then he asks me to stand and says how fantastic I look, how straight, and tall, if a bit too thin (I know I need to put on some weight). I can bend over nicely, but still can't bring my leg up to tie my shoes, etc., but I now have the go ahead to begin stretching so I can tie my shoes.

He insists that the sciatica and tearing pain in my upper back is due to my body slowly readjusting to movements that are still fairly unfamiliar to it, such as walking longer distances more often, sitting for longer periods, and gosh darn it, playing badminton!

Of course, I completely forgot to get a new PT script from him, but I can get that faxed over to Pam by tomorrow. He says light weights (which is what I've been doing) should help to strengthen it up, and with strength will come relief from pain. I hope so! I think I'll even tempt fate and begin to swim again, gently this time, so any pats on the back won't hurt too much.

You Go Girl

2007-06-11T11:14:00.001-05:00

You Go Girl, originally uploaded by Ingrid!.

Six months today!

2007-06-11T11:04:00.003-05:00

DSC_0038, originally uploaded by joeinqueens.

Hey last year I was hobbling around with a cane.
Six months ago I was in surgery.

Saturday I played badminton. yay!

Medicare Denies ProDisc Coverage

2007-05-26T12:26:00.001-05:00

From today's Times: This is not good news.

"How'm I doin'?"

2007-05-09T07:24:00.000-05:00

Shame on me for not updating, but I've got a good reason; I've been busy doing other things rather than obsessing about my back!

So I'm seeing a physical therapist for the stabbing, tearing pain in the middle of my upper back. It was most likely brought on by me trying to overdo everything cause I just felt so good and ready to try to stretch and work out like I normally do, well, like I normally did almost a year and a half ago. Swimming, which is supposed to be so good, probably should have been done with a bit more restraint than I went for it, but say la vee.

The PT mostly just massages the region around where the pain originates. It's all 'crunchy' cause there are so many knots in the muscles. This isn't a relaxing massage, either, folks. She puts some real elbow grease into it and I'm usually sore just from the rubbing, but I know it's good sore cause it means that blood and oxygen are getting to the muscles that need it. Then I do some light, very light, exercises for that region, and what do you know? It's getting better. When I go back for my post-op visit in June it will be six months and that's when Theresa says they usually start the PT for the lower back, the area that was actually most affected by the surgery, even though what I'm experiencing with my upper back is a result of my whole skeletal structure being shifted around. This Friday will be five months to the day since the surgery, we'll see how I'm doing then.

I was over my back ...

2007-04-03T16:52:00.000-05:00

This looks and feels the same to me as it has for the past couple months now. Still sore, still feels like it's going to pull apart when I stretch (which I found out yesterday I wasn't supposed to be doing. Oops.)

Talked to Theresa yesterday about the weird burning pain in my upper back that gives me the chills and the willies and the persistent nag of the threat of full blown sciatica shooting down my legs. She repeated her mantra that I'm overdoing it and I should listen to my body. How do I start to listen to my body now? Much of my life has been spent ignoring those tiny tweaks and twinges in order to just get through the day. How else could I have spent years fencing, rock climbing, running long distances? I'm not sure what listening to my body even means.

So today at the gym I only did legs, and I haven't been swimming for a week, afraid I'll get the burning pulling pain in the water and necessitate a rescue by the lifeguard. It's that bad, and I sometimes can't feel when it's coming. I Also can't believe I did it to myself trying to stretch. When will I learn that I'm not competing with anyone and it doesn't matter all that much if I exercise six times a week or three? I'm still getting plenty of exercise walking Tony every single day (but in fact the walking is what brings out the sciatica, what to do?). Today at the gym I was feeling good after a half hour on the elliptical cardio machine and full leg weight circuit; I had no twinges in my legs until I started stretching my quads (which I was told I could and should do), at which point I felt that little shock go down my legs. I'm thinking it has something to do with arching my back, which I did slightly while performing the stretch.

It's clear I must cut back my activites, which I already have been forced to. I miss swimming, I miss the smell of the chlorine and the beauty of our pool; I miss gliding through the water, channeling Michael Phelps, rocking from side to side gulping in air.

Just when I thought it was safe to be so over this whole ordeal, it's, if you'll excuse the pun, back.

My first time in jeans ...

2007-03-24T08:23:00.001-05:00

My first time in jeans ..., originally uploaded by Ingrid!.

yay! They still aren't too comfortable in the stomach area, but what the heck.

“... they hurt me so,” said the little mermaid. "You must suffer a little, to be beautiful," replied the old lady.

Abdominal Incision 14 weeks

2007-03-21T11:15:00.000-05:00

*sigh* Again, not much difference that I can see. So little difference that I even forgot to post a shot last week. It's still lumpy and red, and I'm still feeling the little (sometimes not so little) pin pricks of pain that mean that the nerve endings are coming back to life.

I've been swimming, doing the elliptical, some light weight-training and long walks with Tony. A week or so ago I went down to Canal Street with a friend and we had to wander around up and down the same street a few times before we found the store we wanted, and I could! What a difference, just 4 months ago, there's no way I would've even made it to Pearl Paints, much less wandering around in the plastic store and then looking for Pearl River. Yay for my legs!

First swim since the surgery!

2007-03-08T13:16:00.001-05:00

First swim since the surgery!, originally uploaded by Ingrid!.

I only went for about 15 minutes, but MAN, it felt good. I'm tingling with endorphins. Also walked two and a half miles so far today with Tony (a mile and a half this morning, then another mile just now). Yay for swimming, yay for new swimsuits, yay for surgery and feeling better.

yay.

Abdominal Incision 12 weeks

2007-03-07T17:34:00.000-05:00

OK, still not looking too much better, but they say it needs three months to work fully. Wouldn't it look better in three months anyway? It seems that this is similar to Groundhog Day (the day, not the movie), in that if the ground hog sees his shadow it's six more weeks of winter, and if not it will be an early spring. Well, how much earlier can spring come than the second week of March, which is six weeks from Groundhog Day? It's the same thing in my book. Anyway, I digress, but only because I'm just not too excited about the results from the Neosporin Scar Solution so far. I'm hoping that there will be a big improvement all of a sudden in the next few weeks because as you can see in the picture, I bought a two piece bathing suit! It's a TYR fitness suit and it's going to be great for swimming laps. It fits great and I was having a real problem with the one pieces; my torso is longer by at least a quarter to a half an inch, so all the suits that fit my hips were digging into my shoulders because they were too short for me. So I'll be flaunting my scars at the London Terrace pool, I hope no one is squeamish!

Comic relief

2007-03-04T12:07:00.000-05:00

At first glance, this xray doesn't look too much different fromt this one, but if you look closely, you can see that the fused area is filling in a bit more with bone.

That's good.

Right after I was shown into an exam room, one of the interns came in to see me. Last visit Dr. B. brought this kid in to see my progress and introduced him, saying that he had "scrubbed in" on my surgery. (Thanks to Grey's Anatomy, I now know what that means.) So this kid (I kid you not, he was like 12 years old) comes in and asks me a bunch of questions about pain, activities, etc. He examined the scars and said they looked "good," whatever that means, and took some notes. I asked him about the slight sciatica feeling pain I was getting when I lean forward sometimes and his answer was basically, don't lean forward like that. *rim shot* Who is this guy, Jackie Vernon?

Dr. Balderston came in a few minutes later and said it looked "absolutely beautiful," and was healing exactly as it should, which of course is great to hear. I joked with him that usually when someone says I look beautiful, they are looking at my face, but I'd take the compliment however it came. He joked back (unusual for him, he's usually all business)that for him, face, back, whatever, it was all the same. It felt so good to joke around with him, after all the seriousness in the past year or so. What a relief! I'm now allowed to start swimming again, and can use any of the elliptical machines in the gym, as well as the stationary bike. This will give some much needed variety to my workouts, and help to redevelop my leg muscles. I still can't believe how much walking still hurts my legs (and feet!).

My next follow up appointment isn't until June (three months from now!) and I joked to Dr. Balderston that if at the three month follow up had the intern coming in first, I wondered who would be coming at the six month visit, the janitor? *rim shot*

But seriously folks, everything is going just like it should, and that's no joke!

Abdominal Incision 11 weeks

2007-02-27T09:57:00.000-05:00

This week's installment of the Neosporin Scar Solution Challenge.
It's not looking much different than last week. I'm also a bit concerned about the formation of scar tissue. I'm trying to massage the area gently, but it is still quite sore and I can feel the thick scar tissue that's formed underneath. I don't want it to adhere to any layer of muscle in there, cause then it will look ugly and lumpy and there goes my goal of a six pack by summer.

I see Balderston on Friday and let's hope he gives me the go ahead for more activities (like bending!), and maybe some physical therapy to break up the scar tissue.

The MOLBY Revolving Hammock

2007-02-21T17:29:00.001-05:00

The MOLBY Revolving Hammock, originally uploaded by Magnolia Thunderpussy.

A bit of vintage advertising found on Flickr. I should have used this, I may not have needed surgery!

Abdominal Incision 10 weeks

2007-02-20T14:08:00.000-05:00

On with the Neosporin Scar Solution Challenge ...
It doesn't look too much different from last week's photo, but I didn't really expect results in one week.

I've still got the sciatica-type pain in my left leg and hip, and I'm now thinking that walking Tony, when he's in an excited state and pulling a bit on the leash, isn't the best thing for me. True, he's only 17 pounds, but I just had major surgery 10 weeks ago.

I'm feeling very frustrated right now. I mentioned before that I had stopped going to the gym in favor of walking Tony, but with the weather being absolutely frigid, neither one of us wanted to spend much time outside. Then I started to feel the pain and panicked and started to try to take it easy. But after about a week or so of that, I started to go stir crazy. I need exercise, mentally almost more than physically at this point. Plus with Tony being all in an anxious state about something, I needed to stop and rearrange things.

So I went to the gym today and rode the recumbent bike for twenty-five minutes and then came home. We'll increase the dog-walker's time in the afternoon from a half hour to an hour so Tony gets his exercise too and see how we all do. From just that short session at the gym, I'm already feeling better.

Abdominal Incision 9 weeks

2007-02-14T14:13:00.000-05:00

It's still looking pretty raw, I think, and it's still sore and tender to the touch. It's also still a little swollen, which bothers me more than anything. I went to the dermatologist last week and he said that Mederma and Vitamin E, which is what I was using, don't really do too much. He recommended Neosporin Scar Solution, which I applied last night. The pads seem sturdy enough, but I'm not sure if they are going to last the 3-4 days that the dermatologist and brochure said they would. I woke up in the middle of the night last night to find one stuck to my finger and two more rolled up in the bed, stuck with lint. I plan to take a picture every Monday for the next several weeks to see how much it is helping, or not.

Stay tuned.

All the barking dogs were not in the ring ...

2007-02-13T11:44:00.000-05:00

This past week found me grimacing every time I leaned forward in my seat or randomly when I put weight on my left leg, and then later, also my right. Ugh. Not much pain, but pain, nevertheless, coupled with a weird pulling sensation that I've felt before over the last 15 years or so. Ugh x 2. My normal reaction to it would be to stretch stretch stretch my back and my legs, but that is still verboten, so I was left with just the grimacing, which didn't help, and rest, which did.

Another call to Theresa pretty much confirmed what I had feared: I'm overdoing it. She said it's not unusual for patients to have pain associated with the surgery for months or even up to a year afterward. Of course, Type A competitor that I am, I was trying to be the "star" patient and really astound everyone with everything that I was doing. So much for that. I can't even imagine going through everything that I went through to still have pain.

So I decided to cut back on my activities. No more going to the gym every day on top of the dog walks, and walking for shorter distances with Tony until this goes away. It's already gotten better.

All this didn't take effect until today, of course, because I had to go to the dog show yesterday. I've been going to Westminster for a few years now, and really missed going last year (I was in bad shape last year this time, remember?). I was wondering what being on my feet for a good portion of the day was going to feel like, now I know: tired, achy, painful, but oh, I was in heaven!

I did come home to rest for an hour or so at mid-morning (right after I saw the Borders in the ring!), and it did seem to help. What also helped was the taking of a Darvocet around 12:30 and forcing myself to sit down and stay sitting for a half an hour. It was hard! I really had to not allow myself to get up and walk around, looking for pictures to take. I finally headed home, reluctantly, about 4:15. I SO could've stayed there all night and gone again today. Did I mention it was heavenly?

I have to say that of all the aches and pains I have today, and they are many (shoulders and neck, probably from camera; entire back, legs, hips and butt), I think my feet were the biggest casualty. I hadn't realized how tender they were from doing only the most minimal of walking for an entire year.

So my new rest regime starts today. I'm putting my feet up, waiting for the dog walker to come and take Tony out, and cueing up the DVR of the dog show that was on USA last night. At least my dogs are getting a rest today!

Uptown Girl!

2007-02-07T19:34:00.000-05:00

Yesterday I went the farthest yet on my own, up to 96th and CPW to my dentist's office. I took the 10th Avenue bus up there and walked the block and a half from the stop to his office. The uptown bus was definitely a smoother ride than the crosstown double length job, with all its weird rattley segments, so even though I was on the bus for much longer (try 40 minutes!), I was ok. On the way home, I was very close to the C train, so I ventured down the stairs and, surprize! It was ok. I was worried again about bumping and jostling, but it wasn't crowded at all and it was really fun to be on the subway again, without the cane and without Tyler and without worrying.

I'm actually starting to feel not only like a normal human again, but a New Yorker! Yay!

I feel good!

2007-02-03T18:13:00.000-05:00

I'm feeling like kicking up my heels!

I'm feeling really good lately. I've still got some really persistent itching in the incision area (I guess I can call it a scar now) and a twinge in my left lower back that feels like the start of sciatica, but isn't (a signal from my body that I'm over doing it a bit).

Spoke to Theresa on Friday about the quasi-sciatica pain and got the go-ahead to start riding the recumbent stationary bike at the gym. The reason that they don't tell everyone to do it is because some people have a lot of pain and discomfort when they sit. This can continue up to 6 months after the surgery. Lucky for me, I managed the bike for 20 minutes no problem. I'm really glad to have something else besides walking to do; it was getting boring, and now that I'm walking Tony more than just for "business," I needed another activity for the gym.

Thursday Tony and I walked up to 44th and 9th back (three miles total) to 24th and 10th. It's not a very picturesque walk, lots of trucks and buses up that way. Going south on 10th Avenue is definitely a better option, except it's really cold ; the wind whips off the Hudson like a mother. Most picturesque would be the walkway in Hudson River Park, but that would be colder still, plus Tony hates rollerbladers and skateboarders (don't we all?). Yesterday we went two miles and today too, a mile in the morning and a mile in the afternoon. Plus, I went over to the gym at 8th Ave. (another mile round trip) and rode the recumbent bike for 20 minutes for an additional three and a half miles. I'm also doing a bit of upper body work, biceps and triceps and shoulders, light weights, lotsa reps.

Both scars are very itchy. I still can't bend properly, so I keep my slippers, sneakers and boots (the only footwear I've been in for a year) on a shelf so I won't have to bend to get them. Also, washing my face at the sink and brushing my teeth are still hard. Well, brushing the teeth isn't so bad, it's the spitting, ever try spitting NOT on yourself without bending at the waist? I could bend at the hips, but I'd have to stand in the tub to reach the sink; I'd look like one of those dipping birds Anyway, we moved a small stool into the bathroom. Did I mention the itching? Otherwise I could positively jump for joy! But don't tell my doctor.

Incidentally ...

2007-01-27T15:20:00.000-05:00

Here's the statement from the insurance company for my surgery. As you can see (click on the photo to see it larger), the hospital was allowed just over $71,000 for "incidentals." If you think that is bad, we saw the documentation on the insurance company's website showing that the hospital actually asked for $153,000 for the "incidentals." The fact that they're getting just under half of what they asked for sounds cheesy on the insurance company's part, and luckily, our insurance company did cover those incidentals, no problem, so we don't have to pay.

Still, I'm curious as to just what exactly those incidentals were. I mean incidentals are defined as things that are minor, casual or subordinate. Subordinate to what? Well, things that are not incidentals, but essentials.

So is this charge for things like those little bottles of Keri lotion or the infernal baby powder they are always pushing on you when you are a patient? Actually I think those things are better categorized under "sundries," but there wasn't a category on the statement for that. Anyway, I didn't use the lotion or baby powder, so maybe the insurance company can get the money back? Not that I'm so keen on helping out the insurance company, but then maybe our premiums would go down, or something like that.

Do the incidentals include the use of hospital gowns? Cause I brought my own, so can that be deducted too? The day I was discharged a volunteer came in and gave me a small plant; what portion of the 71K was that little schefflera?

Just the room and board alone was close to $25,000. I could have rented a room at a nice hotel in Philadelphia with that money. I sure didn't eat many meals (read: ONE that wasn't sippable, and there weren't too many of the sippable kind, come to think of it) so there should be a reduction in the "board" amount, too.

I guess I shouldn't be complaining too much, as I said earlier, our insurance company did pay for most of the bill, but I just wonder what kind of world it is where insurance companies will pay $71,000 for "incidentals" but won't approve more than one level of TDR (total disc replacement) when a doctor deems it necessary. As in essential. As in the opposite of "incidental."

Ain't Technology Grand?

2007-01-20T11:41:00.000-05:00

I'm looking good!
Or so Dr. Balderston says. He pulled the remainder of the surgical tape off the abdominal incision and it doesn't look as bad as I thought it would. He says it's still somewhat swollen, and I can attest to the fact that it is still very sore to the touch. Those red marks on the sides are bruises from when the surgical tape was on and I had the distention problem, causing blisters to form under the tape. Ugh.
He was really impressed with my walking regimen, but didn't give me permission to do anything more than that at least until I see him again in another six weeks. I am allowed to begin doing some upper body work, mostly arms and shoulders (no lat pulldowns, chest or pec work for now), with five pound weights (he started at three pounds, but I got him up to five, ha!). I'm also allowed to start moving my body into different positions, like mild twisting, and I'm permitted to lift and carry up to fifteen pounds. But no bending yet.

I asked him about my still throbbing legs, he said it will go away as I become more used to walking upright (ha, soon I'll be using tools just like a human!). Apparently all my feverish stationary bicycle riding and swimming don't use the same muscles as good old-fashioned walking.

As you can see from the xrays, (click on the images to see them larger)he didn't take out the old rods; there was so much bone grown over them that he said it would have been a much more painful recovery for me. What they did do was cut the rods and reposition them so that my shoulders and thoracic region are now above my pelvis, and not pitching forward (compare to this). The first little red arrow in the xray on the right is where they cut the rod, the second points out the L3-4 fusion with small metal cage and screw, the third arrow points to the ProDisc at L5-S1.

Ain't technology grand?

I'm Walkin' ...

2007-01-12T15:34:00.000-05:00

Yes indeed!

So today I decided to go the medical supply store at 8th and 25th and see about some kind of a brace to wear to help to remind me to stop twisting! Try to count up how many times a day you twist your torso, then imagine not doing it. It's nearly impossible for me, it seems. Anyway, I spoke to Theresa about this yesterday and she suggested that I try one on before I buy it, then she would fax in a script so it would be covered by the insurance.

So I get to the store and they have quite a selection; the guy who is in charge of "devices" helps to fit me with one, and when he pulls it around my waist to cinch it, his knuckles go right into the incision. Even without his knuckles in the mix, it's way too tight to be comfortable on the incision right now (this is the abdominal incision I'm complaining about right now; for some reason, the incision in my back seems to be further along in the healing process and not as sensitive to the touch). I decided not to get one, at least for now. I'm seeing Dr. Balderston next Friday anyway, so hopefully he'll tell me that it is ok to twist, or something.

I did my walking again today! After I walked over to 8th Avenue to the medical supply store I went down to the gym at 23rd and did a mile on the treadmill at a higher speed than yesterday and a .5 grade incline. Yay! I now have sore legs, sore butt, and shin splints, but man, is it a good feeling. Shin splints remind me of running, and that's ALL good. My stomach muscles are also really sore, not sure what that's about, I mean other than the surgery five weeks ago. They seem to be getting a bit more sore as I increase the walking. I'm happy for any muscle sensation I get at this point, and can't wait to be able to do more. For someone as active as I usually am, this is torture.

Progress, maybe

2007-01-11T12:24:00.000-05:00

Since I'm not allowed to do any exercise other than walk, I've been really trying to make the most of that. I've been going on increasingly longer walks everyday (Tony is upset that I don't take him along!), beginning with just walking around the hallways in my building and now including strolls around my Chelsea neighborhood. These latter outings are usually under the guise of running some errand, like picking up some fruit, dropping books off at the library, or buying a magazine or small treat for myself (croissants from Breadstix Cafe) while I'm out.

Yesterday I walked over the West Side Highway, up to 27th Street (when it started snowing!), back over to 10th Avenue, down to 23rd Street, up to 9th Avenue and then cut through my building for the last block cause I was freezing my ankles off in my capri sweats.

Today, since my long-frozen membership at NYSC has finally been unfrozen (I'd been working out at the London Terrace gym until just before I went into the hospital, it was much, much closer to home), and since I didn't feel like freezing my ankles again, I walked the two long blocks over to NYSC at 8th Ave. Once there, I walked a mile on the treadmill, then walked home with a small bag of fruit. My butt and legs have been sore since Tyler and I walked over to Bed Bath and Beyond on Sunday (four crosstown blocks from our apt., my farthest walk yet!) and took a cab back home (when I realized with a start of horror that I wasn't supposed to be in a car, but by then we were almost home, incident-free, thankfully).

Still, I've kept up with the walking every day this week. The soreness feels good; it's a different kind of achiness, a different kind of pain. This pain is from use, from increasing strength. It feels good. I'll let you know tomorrow if it still feels good, but whether it does or not, I'm still going to walk. Maybe just not as far.

Shout outs!

2007-01-08T15:10:00.000-05:00

Now that I'm one month past my surgery, I'd like to give some shout outs to the hospital staff that made impressions on me during my stay.

A big shout out to Angela, the Physical Therapist on my floor. She insisted that I practice getting in and out of a car (they had half a fake one in the rehab room) even though my post-surgery instuctions say "absolutely no automobile travel until your follow up appointment." She also said I had to try steps. Again, the instructions warn against steps.

A shout out to my nurse the first day after my surgery. I still don't know her name (in my mind she is "Dumb Dora"), as she consistently refused to write it on the little whiteboard by my bed for that purpose. She never came to check on me that first morning, as if she had, she would have seen that I was laying (on my side, thankfully!) in my own puke. Instead this was discovered when Dr. Balderston and Theresa came in for rounds first thing. Someone must have gotten reamed a new one from Dr. B. and Theresa because as soon as they left there were about seven people in my room, including the Nurse Manager. Dumb Dora then stuck her face next to my ear and shouted, as though I was a deaf, mentally challenged 4-year-old that didn't speak English, "Do you want something for nausea?" I think I rolled my eyes and said "what do you think?" I had to really bite my tongue, as I'm sure you can imagine what I wanted to say.

A second well-deserved shout out to Dumb Dora, who, when I asked for something for pain after I had been taken off the IV Demerol, refused to read the second page of my chart where the previous nurse, Patrice, had noted that I was getting Darvon, not oral Demerol (which is ineffectual). It wasn't until I picked up the phone and started dialing Theresa that she miraculously summoned the energy to flip the page and find the most recent additions to my chart and get the correct pain meds.

A shout out to the Nurse Assistant (or whatever they are called) who was attending to my roommate the night of my surgery and who double dipped with her bare, ungloved, probably unwashed hand into my cup of ice chips.

A shout out to whoever the nurse was for my roommate who left her stuck on a (full) bed pan for 18 minutes (we timed it).

A shout out to the Physical Therapist who was on duty on Saturday and came right after I went through the horror of having the tube thrust up my nose and down into my stomach and then, ignoring my wishes to not get up right then (the tube was really, really uncomfortable plus I would have had to carry the cannister with the black, red and green slime in it around with us!), asked the nurse if it could be disconnected "for a few minutes" so I could walk around the floor with her and presumably practice getting into a car and going up and down steps.

A shout out to my nurse Barbara, who left the clear plastic container with the black, red and green slime in it hanging on the wall above my bed for three more days.

Yet another shout out to Dumb Dora, for standing over me with her arms folded across her chest not helping or offering any comfort whatsoever while I cried out in pain, unable to move myself from my bed over to the gurney that was waiting to take me to xray the day after surgery. Once I manoevered my way over without her help, she dashed back to her seat at the nurses station stating loudly to the other nurses, "She had her arm in the wrong position." Yes, that was it and it was all my fault, Dora.

And still another shout out to Dumb Dora for, when I asked for something for heartburn (my acid reflux was killing me as I had to lay flat to comfort my back), telling me that laying flat to comfort my back or propping myself up to relieve the heartburn was "a decision I would have to make." Again with her arms folded across her chest, like she was mad at me for having had heartburn.

A shout out to the entire nursing staff who ignored three calls from me for pain medication over a two hour period between a quarter to six and eight fifteen in the morning on Saturday. By the time someone came in (incidentally, NOT a member of the nursing staff, an NP with orthopedics who was doing weekend rounds) and summoned the nurse (and no, it wasn't Dumb Dora), I was in tears and incoherent with anger.

I'm really not a complainer but come on; some of this stuff is just beyond the pale. I do have some positive shout outs, unfortunately not very many. I'm researching an essay on the health careless situation in nursing, and wanted to get these out there first. Stay tuned for my take on the "nursing crisis."

28 days later ...

2007-01-08T09:19:00.001-05:00

28 days later ..., originally uploaded by Ingrid!.

Posterior incision. Looks ok, and at least it's less itchy than the one on my stomach.

Do The Twist

2007-01-05T09:08:00.000-05:00

Here I am in my "bone growth stimulator." It sounds like a lot of hocus pocus; supposedly this apparatus (like having two picture frames strapped to my body) is supposed to send out micro-pulses that stimulate bone growth, helping the fusion to heal. OK. Hey they gave it to me in the hospital, so I'm using it.

It can't heal soon enough for me.

I'm not allowed to bend at the waist; if I want to pick something up off the floor, I have to squat down, plie-ing like a ballerina. An aching, sore, awkward ballerina trying to pick up her damn ugly-azz slippies (even my doctor made fun of them in the hospital, but they're so comfortable and they were only 7 dollars!) off the floor.

I'm not allowed to twist, even though I've woken up a few times in the night with my hips facing a different direction from my chest. I just now noticed that I'm kind of twisting in the photo above. It's hard not to twist.

I'm not allowed to pick up or carry anything over 10 pounds, though as I said before, anything more than a cup of tea or a book feels like a ton. And twisting and lifting and carrying is strictly verboten. Like something as simple as picking a dish up from the table and turning my body toward the kitchen with the dish in my hand is not allowed.

I can't swim, obviously due to the incisions mostly, but also because the weightlessness of the water, the thing that made me feel so good before, is now not my friend. I could overexert and snap a still healing muscle in a snap.

My recovery time would be much, much shorter if I had only had the ADR, but because I also had a fusion in two of the vertebrae, the healing and recovery will take months. At least it isn't as bad as when I had the first fusion for scoliosis 20 years ago. Then I had to wear an uncomfortable plastic "brace" (read: body cast) for six months. It was sweaty and at times unbearable. I had to wear a tshirt next to my skin under the brace, and anytime I went out of the house I had to carry a fresh tshirt and a plastic bag with me, ducking into the ladies room of whereever I was to take off my dripping wet sweaty tshirt, put it in the plastic bag (PU!), put the fresh shirt on and dry off the brace on the inside and put it back on. Then put whatever baggy shirt I was wearing over it all back on. Sometimes I'd need two clean shirts with me if I was going to be out for a while, and this wasn't even summer, it was October, November, December.

As much as I don't miss that, I do kind of miss the brace. Everytime I step out on the sidewalk now, I'm in fear. Fear of someone smacking into me, of tripping, of those damn delivery guys racing down the sidewalk on bikes, bags of food swinging like maces off the handlebars. Also, it would keep me from moving improperly, like the mindless twisting I do about a hundred times a day, like I'm twisting in the photo above. Not good.

What I can do is walk. And I do it everyday, either outside, in fear, or inside. We are so lucky to live in a huge building, an entire city block. We've got long interconnected hallways on the first floor so I can stroll around in my pjs and slippies and get my exercise without going out.

I've got my first follow up with Balderston on the 19th of this month and I'm hoping he'll give me the go-ahead to do more than walk then. But, I still may not be doing The Twist anytime soon.

Quest for Sweats

2007-01-02T11:21:00.000-05:00

I'm on a mission to find a pair of good quality sweat or fleece pants that fit, and that don't have an extra tight waistband. After I discovered how comfortable the Old Navy Sleep Bottoms were (soft cotton flannel fabric with gentle elastic and a drawstring that doesn't irritate the incision) I sent Tyler to pick up the last two XS pairs in our local store. They are my uniform, and thank goodness all the pairs I have are new enough not to be ratty, so I can wear them when strolling around the hallways in my building.

But now that I am getting outside (trying anyway, once a day)I need something I can wear outside that is stretchy and warm and comfortable. Jeans are out right now, they would cut right into the incision on my stomach and probably my back too. I have two pairs of sweatpants but they got mistakenly put into the dryer, so they are now capri pants. My yoga pants are too thin to wear outside in the cold. Also, all these items have fairly heavy waistbands that, if they don't cut into the incision area, cause sweating in that general area, which leads to more insane itching than usual.

If anyone has any suggestions for a good pair of semi heavy-weight "activewear" (ha that's a relative term!)pants aka sweat pants that look decent enough to wear out on the streets of New York, and that don't have super tight waists, please let me know?

Freedom!

2006-12-29T12:46:00.000-05:00

It's 18 days out from surgery now and I don't think this incision looks much different than it did here. It sure does itch and burn and hurt. I've lost the weight I managed to put back on just before the surgery; I guess 8 days of not eating anything but ice chips will do that to you. I don't recommend it as a weight-loss tool. Also, I'm very, very pale. Not sure what's up with that.

Most of the pain I had when I came home (after the whole "natural gas" disaster, which was VERY painful and weird) was in my legs and stomach from the muscles being stretched. Not only was I not used to walking upright, but the ProDisc that went in a L5-S1 made me at least a quarter of an inch taller than I was before I started stooping. Having muscles stretched 24/7 was so much more painful than I would have imagined. Stretching usually feels good. This didn't.

The worst of this pain was centered right around Saturday (the 23rd) and Christmas Eve and Christmas Day, or at least it seemed so because I was no longer on the Demerol. I still have fluctuating pain in my legs and low back and stomach after I've been up and walking for a while, but they say that this will go away eventually. Dr. B. says it is not unusual for patients to have muscle pain from the stretching for months after the surgery. I was in such good shape (the word Dr. B. used to describe it was "remarkable") going in to the surgery (swam a quarter of a mile the day before), I just can't imagine what people go through with this type of surgery that are overweight and out of shape. If you are reading this and considering back surgery, start exercising yesterday!

Anyway, today I walked (gingerly!)from our apartment at 10th Ave to 8th Ave and bought some fruit. I was careful to only buy as much as I could comfortably carry, and that wasn't much; I'm officially not allowed to pick up anything that weighs 10 pounds or more and anything that weighs more than a mug of tea generally causes pain. It was weird being out without the cane, I felt a sense of freedom, but also like there was something missing, like I was exposed and vulnerable to injury. I avoided passersby assiduously, almost to the point of paranoia. Friendly neighborhood dogs are a problem now too, I can't risk getting sideswiped or jumped on by even a small dog, as the sudden jolt could torque the spine, wreaking havoc with all the healing muscles and the fusion. I've decided that the next time I go out on the street, I will take the cane, just because people tend to give you a bit more consideration and a wider berth when you walk with a cane. Even in New York. [That's right, Ben, I'm sacrificing freedom for security. Wanna fight about it?] Still, it was a heady experience, being out and about and upright.

Then I came home and took some Darvocet and went to bed, because this kind of freedom definitely has its price.

I'm on my way home

2006-12-19T15:30:00.000-05:00

Yay!

The breakfast was pretty darn good. Fake eggs that were doled out with an ice cream scooper, a thin, greasy sausage patty and a tiny, very oily muffin. I didn't touch the corn flakes (too much sugar). The first few bites went down, but felt like they didn't go all the way down; I had to take frequent breaks to let the food settle. Had some slight cramps just after I finished up, but luckily everything stayed down, which was what they were waiting to see, so I get to go home! Tyler is on his way to pick me up now.

I can't wait to sleep in my own bed tonight, the hospital beds provide all the support of one of those big balls they have at the gym. They're wobbly, squishy, and you practically need a rope to help you climb out once you're in it.

I'm also anxious to get to my own food. Remember the Triscuits I wrote about the other day?

Tummy Ache

2006-12-18T18:41:00.000-05:00

They took yet another set of xrays (this was the fourth!) this morning and determined that the obstruction had lessened somewhat, at least enough to allow me to graduate to a clear liquid diet. Yay! I've been sipping on cranberry juice and extra salty beef broth all day. My abdomen is still very distended (though you can't really tell from this picture) though not as much as before. Because I'm now ingesting clear liquids, they were able to take me off the IV fluids, and not a moment too soon, as I have not a viable vein left in either of my arms or hands.

Unfortunately, taking me off the IV also means that they are trying to wean me off of the IV pain meds. The Demerol was really allowing me to get sleep that I desparately need and I'm just now realizing that all this hurts. A lot. Dr. Balderston says that I'll have muscle aches and pain for "several months" (ouch!) while my body adjusts to its new way of being. My right leg, for instance, which was always buckling underneath me is now stretched taut, as are my stomach muscles. It feels a bit weird to be walking upright and not have to hold myself up with anything, but, hey, I could get used to it!

Keep your fingers crossed that all goes ok with the clear liquids and that I can graduate to the "mushy diet" tomorrow and then it's on to solid foods. I won't be getting out tomorrow, Wednesday or Thursday is more like it, and I'll know more after talking with Dr. B. tomorrow morning.

Nil per os

2006-12-17T18:16:00.000-05:00

I ended up with just one ProDisc and the other two bad discs fused. I'm very disappointed in this result, I really, really, wanted the three discs, but aside from this, I'm doing pretty darn good.

The first few days after surgery weren't so good. I was out of it and in a lot of pain, and then they gave me morphine even though I told them not to. The morning after the procedure I woke up to see my doctor standing next to me with, like, a seven thousand dollar suit a big smile and told him if he didn't want puke on his pants, he needed to step back. The whole side of the bed and me were soaked with puke. It was in my hair, everywhere. I heard Theresa say, "oh, why'd they give her morphine? She gets sick on that." Why indeed? I told the anesthesiologist and anyone would would listen that anasthesia and morhine make me vomit. How is it they don't share this information? Or remember it?

The days after that and leading up to yesterday were pretty much run of the mill post-op days: me out of it and getting ignored by nurses. I sometimes wonder why people with absolutely no compassion or aptitude for working with people go into health care.

Today was the first day I felt coherent in any way. I have some kind of condition or complication called "ileus" which occured as a result of my internal orgrans being moved all around during the surgery. The remedy for this is, of course, to pass gas. I've never had so many people so interested in my farts. Every doctor, nurse, intern and nurse's aide that's come by here since the surgery has asked (sometimes more than once) if I'm "passing any gas?"
They say that average person passes gas around 15-20 times a day. Talk about taking something for granted. I'm up to maybe four times a day and each time, it's a real event. I've been up walking around the floor here, getting my own ice chips, etc. in an attempt to get my sluggish bowels moving, but it's unfortunately a very slow progress.

Yesterday I had the singular indignity of having a tube inserted in my nose, down my throat and into my stomach to try to "decompress" my abdomen. So on top of everything else, I had to sit here watching blackish blood and greenish slime being pumped out of my guts through my nose. I actually asked , no demanded that this be done because my stomach was so distended my skin felt like it was going to snap, this is a very weird feeling. The nurses were saying they could have bounced a quarter off my belly. I was dosed up with drugs, fell asleep and pulled the tube out. Thank god they said they didn't want to put it back in. The canister with the yucky guts stuff in it is still hanging on a hook on the wall. I've had three sets of xrays, called "obstruction series" looking for what was in there. I overheard one of the doctors say it was a dilated loop, so apparently it is just several giant gas bubbles.

It's been seven days now that I haven't eaten. I'm allowed to chew/suck on ice chips but that's it. I've been fantasizing about what I want to eat when I 'm allowed, and it isn't even the elaborate steak or lobster dinner that most people might crave, I'm thinking about everyday little things like Triscuits, some raisins, maybe a handful of almonds, and hot cup of strong tea. Oh, yeah, pretty darn good.

Operation: Lose a Turn

2006-12-06T20:59:00.000-05:00

After all the months of waiting and worrying and looking forward to as well as dreading the day of my surgery ... it was postponed. I know things like this happen and can't be avoided, but I sure was frustrated and disappointed.

The reason was that there was one small part that went with the apparatus (small rods, screws, etc.) that would be used if he has to do a fusion on more than one level. We are hoping that this is not the case, but he said he couldn't go ahead with the surgery, that we'd waited too long for everything not to be perfect.

I'm not doing the countdown again, I think it may have jinxed me, as I neglected to post a "one to go" photo yesterday.

3 AM

2006-12-05T05:00:00.000-05:00

What is it about three o’clock in the morning? Is there something hardwired into our bodies, some primal instinct, that causes our secrets to spill out, flowing like blood from a fresh cut, at that hour?

The last month or so I have been struggling with a compulsion to get high.

We keep wine in the cabinet in the kitchen for cooking, but that doesn’t interest me. It’s drugs I need, something strong, something that tastes bad when it drips down my throat, or burns my nose or sears my lungs, something that hurts so good. Something different from what I’ve been for what seems like so long.

Last week I found a Vicodin (ok, I hid it last year, “just in case”) and since I know it will make me sick to my stomach and ruin any buzz, I looked up online how else to get it. into my system. I read that snorting or smoking was the best way to get any drug into your system, so after I failed to make a decent pipe out of aluminum foil I decided to snort it.

I pulled the stool out and sat at the kitchen counter, using the same cutting board and Henkel’s chef knife we’d used the night before in preparing dinner and crushed it up with the side of the blade, like it was a clove of garlic. Funny, but just the ritual of chopping it, trying to get it fine enough, pushing it into lines, then cutting a straw to just the right length, seemed to go a long ways toward calming me. I did these things by rote, without thinking, they are a part of me, even though it’s been twenty years or more since I last chopped and lined anything up. Yet, after a few minutes of disgusted staring at the now sullied innocence of my kitchen utensils, I couldn't bring myself to do it. I swept the powder into the sink and sprayed water on it until it all melted and went down the drain.

In the same drawer with the stashed Vicodin I came across an old cigarette case of mine, lovely gold plated with inlaid mother of pearl, and a matching lighter. I opened the case and was surprised to find a Newport, slightly worse for over twenty years of wear, inside. I took it out and held it between my fingers, here was the thing that had been missing from my hand for all these years. I thought about lighting it up, pulling the smoke into my lungs. At least it would have been a different sensation from what I was feeling, what I have been feeling for months and months: worry, anxiety, fear.

Even now, at the magical hour of 3AM, the time when all bets are off, and every lousy, fucked up nightmare you’ve ever had seems not all that weird, I can’t imagine what my life will be like without this situation, this disability, to deal with. I’ve been shuffling around for nearly a year now. A year is not that long, I know, but I tend to adjust to things really quickly. I once spent four days in London and had a British accent by the second afternoon. I am nervous about what they will give me for pain in the hospital, morphine and demerol most likely. Both of them equally delightful.

Twenty years ago when I had the first spine surgery, I was on morphine for 9 days and was good and addicted when I was released with a script for Darvoset. I went through full-on withdrawal for the first two days, crying, laughing, sweating, shivering, vomiting. It was like I had been a junkie for years. I’m hoping I adjust just as quickly to not shuffling, but of course I can’t see that, can’t picture, now, at 3AM, what it will be like and how I will walk without pain, though I can imagine with precise detail and clarity the sensation of being high on Quaaludes, the numbness in my face, the warm buzzing in my ears, or the sudden rush when my heart starts pounding all the way down to my bowels when the speed hits my system.

Maybe the explanation for the urge to “party” is a control issue. Let's face it, I can't stand up straight, I can't walk more than a few feet without stopping to lean on something, the insurance company, the FDA, the hospital, the doctors, all have more control over what happens to me than I do. Damn it, at least I can get a buzz.

For now, maybe I’ll just have a cup of tea, the caffeine seems about as safe a choice as I have to chase the worry and fear. I can drink it out of a pretty cup, sip it daintily, the hot liquid in my mouth and throat a sensation in itself. Something. Then maybe I can go back to sleep before the sun comes up. What is it about 3AM, anyway?

Two Days to go!

2006-12-04T14:09:00.000-05:00

Last Time/This Time

When I had the thoracic fusion to correct my scoliosis 20 years ago, there was so much that was different, and I don’t just mean my hair.

Last time, I was in the hospital for the entire day the day before the surgery. There was a parade of people in and out of the room, explaining things and taking blood (all the stuff we did on our Pre-Admission day of fun last Monday). Dr. Balderston came in to talk to me and said that studies had shown I would not remember anything that happened the day before the surgery. Him telling me that is the one thing I remember. That and the anesthesiologist telling me there was a small chance of my death. They woke me early the next morning; it was still dark out, to take me down to the OR. The nurse yelled at me when she saw I had a sheer pink polish on my toe and fingernails. She came waddling back in with a few cotton balls and some nail polish remover and ordered me to remove it. So much for the lovely pre-surgery mani-pedi I had treated myself to a few days before.
This time, I’ll walk into the hospital the morning of the procedure.

Last time, I was on morphine for the whole nine days I was in the hospital. The nurses would come in with a needle every four hours on the dot and I would dutifully roll over for the shot. My butt was black and blue from all the shots. Both cheeks.
This time, I’ll have morphine, but it will be going directly into my veins, a steady feed, instead of waiting for the nurse to come in and bruise my backside.

Last time, I took myself to the hospital the day before the surgery, marching in alone, too naïve to be scared.
This time, I have Tyler to take me and stay with me until it’s time to get down to business and I’m all too aware of everything to not be scared. (Curse you Grey’s Anatomy!)

Last time, I brought a backpack full of books with me. Baudelaire’s Fleurs du Mal? What was I thinking?
This time, I have a brand new copy of one of my all time favorite books, Kingsley Amis’ Lucky Jim. I probably won’t read it, as there is something about being in the hospital that is more conducive to watching TV (it must be the pain medication), but at least I know it’s there, and honestly, just thinking about the “arty weekend” makes me smile. Fleurs du Mal? WTF?

Last time, I was a member of a union, and we had great insurance. The whole bill, all except about six hundred bucks out of over thirty grand, was covered.
This time, I have UNsurance. They are covering the cost of one disc; I may be getting three, the other two of which we will pay out of pocket for the cost of the disc itself and the surgeon’s fee. It’ll be way more than six hundred bucks.

Last time, I had a young doctor they called the “boy wonder.”
This time, I have a wonderful, wise, very talented and skilled surgeon. Actually, it’s the same doctor, and while he might not be Dr. McDreamy, at least now he’s got better hair this time. We all do.

Three days to go (from yesterday)

2006-12-04T13:35:00.000-05:00

I knew I shouldn't have started this countdown thing, I have so much trouble keeping up ...

Anyway these are the three discs I'm having surgery on, illustrated on the front of one of my homemade hospital gowns, in case my doctor forgets what body part he's working on or something. Note the misspelling!

Four days till surgery!

2006-12-02T15:01:00.000-05:00

Yesterday I had a call from Dr. Balderston. He confirmed what I said here about the logistics of the surgery. Dr. Wernsing will open my abdomen and push my internal organs aside, then Dr. B will begin working on my spine. He said they will start from the bottom, L5-S1, and work up to L3-4, inserting as many as three ProDiscs total (IF he can fit them in). If he can't replace the discs in L4-5 and L3-4 he'll have to do a fusion on those and that will be done through the posterior incision. He also said they will tilt the vertebrae back from this anterior opening so that I can stand up straight again.

He assured me he'll be getting lots of rest this weekend, and that I'll see him just prior to going to sleep so I can do "what I need to do." He explained that some patients want to squeeze his hands to be sure that he doesn't have a tremor (sounds like I'm not the only one watching too much Grey's Anatomy!) I said the sight of him with clean glasses and in scrubs and not a golf shirt was good enough for me.

Five to go!

2006-12-01T11:31:00.000-05:00

Again, if you got one of those emails telling you to please check out my online shop with no link to the shop, yes, I'm officially losing it. Here is the link:

TonySez

Countdown: 6 days to go

2006-12-01T11:06:00.000-05:00

I made my own hospital gowns!
Come on, I am WAY too stylin' to wear that hospital crap. I designed and made three of these, with different designs on each to wear while I'm laid up in there. I even wrote a Wikipedia article on how to do it!

So, only six days to go and I'm losing it big time. I sent out 140 emails telling people about my online shop to try to help with the hospital bills, etc. and forgot to include the link to the shop! Here it is:

TonySez

It's not like I don't have a lot on my mind, but geez. Oh and did I mention I got my period yesterday, complete with migraine and cramps. Lovely.

Surgery Countdown: Seven Days

2006-11-29T13:12:00.000-05:00

The surgery is seven days away.

We spent Monday filling out forms, producing insurance (or as I like to call it, “UNsurance”) information and getting stuck with needles.

The lowlight of the day was when I had to see the cardiologist for a routine EKG. This is like a 40 second test. We were in the offices of Drs. Mandal (a father-daughter cardiology team) for 90 minutes, with only one other patient in the whole place. WTF? It was like a Three Stooges movie, with two admins and the doctor and her “Medical Assistant” running around and literally bumping into each other. And can I just add that they had the absolute worst magazine selection ever? There were three copies of the same issue of a golf magazine and some Prevention wannabe. The highlight of this lowlight was when the MA was taking my history and asked if I ever drank. I said yes. She said how much, I said a lot. She said how often, I said a lot. She asked if I went to AA. Well! I don’t, but hello? It’s ANONYMOUS!? Finally we were released so I could go donate my own blood to be used in the surgery.

The blood donation was definitely the highlight of the day. Darlene was the phlebotomist and once we started to joke around a little with her, she really loosened up, though she still wouldn’t let me take my camera out to take a photo of my blood, all neat and warm in its little pouch …

I found out that another surgeon will be making the incision in my stomach and pushing my organs to the side, exposing the spine anteriorly. They referred to this doctor as a “general surgeon.” Yeah, I know, doesn’t sound good does it? Sounds sort of like the interns are in the back flipping a coin to see who cuts my belly open (I’ve GOT to stop watching Grey’s Anatomy). That’s actually not the case, thank goodness, the General Surgeon that will be making that incision is Dr. David Wernsing and he’s been working with Dr. B for years. I’ll meet with him briefly the day before the surgery. Theresa told me that some patients don’t even ask to meet with him, laying eyes on him for the first time just prior to letting him cut them open. Ack!

She also told me that because of the anterior approach to the spine, I won’t be able to have anything by mouth for 3 days. This is what I’m dreading the most. I do like to eat and am worried about what my stomach will feel like. I get all gurgly after not eating for about 6 hours, I can’t picture three days! But I will definitely be on morphine and out of it from the surgery for at least two of those days so I’m hoping it won’t be too bad.

The operation itself lasts about 3 hours. Once Dr. Wernsing opens me up, Dr. B. will go in and insert the ProDisc(s) in L5-S1 and (if he can fit it) L4-5. Then they’ll close that incision, turn me over and cut again (this one Dr. B. can handle as there are no organs in the way to confuse him, ha) and fuse L3-4, then saw through the bone grafts in my thoracic region and take out the metal rods that have been in there for 20 years.

It’ll be at least two to three days till I can get up out of bed on my own, though they will help me to stand up and take a few steps, if I’m able, the day after surgery. I’ll have a catheter and a pee bag so I won’t have to worry about using a bed pan. Yay! Life is good when you have a pee bag.

Oh, and she also told me that since they’ll need access to the incisions on my front and back, wearing my own pajamas is out. Tune in tomorrow for pix of my own chic handmade hospital gowns!

Big Changes/Small Worlds

2006-11-21T15:23:00.000-05:00

There’s going to be some big changes in my world soon.

I’ve been struggling with intermittent pain for the past five years or so, but by the time I have my surgery on December 6th, it will have been eleven months since the rapid deterioration of three of my lumbar discs set in.

Eleven months of being pretty much stuck in the apartment most of the time.
Eleven months where I went out on social gatherings maybe eight times.
Eleven months where I rode the subway twice.
Eleven months where I watched from my perch on the bed as the bare tree across the street grew buds, then leaves, then lost them, and now is bare again.

Eleven months in which my world has gotten steadily smaller. Except for the occasional bus or cab ride, my world consists of the building that I live in (which is expansive, a whole city block), and the sidewalk that runs around its perimeter where I walk Tony in the morning.

I know the world outside my little environment hasn’t changed just because I rarely venture out into it anymore, but in the few times that I have gone via cab to get together with friends, to go to a doctor’s appointment or to get my hair cut it sure seems different to me. Bigger. Wilder. Weirder.

As much as I am looking forward to the surgery and seeing how things turn out (nothing is guaranteed you know, plenty of people go through things like this and get no relief, but I try not to think of that), I’m more afraid of what’s going to happen after the surgery. I was telling a friend in an email last week that I’m not sure if I remember how to be a functioning adult out there in the big, wild, weird world.

When you have to take a bus to go two blocks to pick up some fruit because you can’t possibly walk that far even with a cane to support you, taking a cab down to Horatio Street to get a hair cut or to the Upper West Side for a teeth cleaning is like going on safari.

While my world is so much smaller, my personal discomfort zone has grown. I’m much more aware of the space around me now, fearing, even more than a typical personal-space-obsessed New Yorker, the jostling of a hurried crowd of people; an accidental brush of an elbow could send a spasm running like an electric shock from my spine up to my shoulder or down my leg. Someone’s casual misstep could knock my cane out from under me, throw me off balance, the pain seizing at my twisted muscles.

Though I’ve attempted to describe, meticulously, all the developments in the two ongoing processes: my own deterioration and the bureaucratic plodding toward the surgery, it seems that my world of words has shrunk as well. There are a myriad of words and ways to describe pain and disability, but I feel like I’ve exhausted them all, and frankly am none too anxious to coin any fresh ones. So preoccupied have I been with my physical situation and the surrounding health care drama that my own novel, as concrete a fantasy world for me as is possible, offers no escape. My mind swings, with the regularity of a pendulum, from any feeble diversion back to my reality.

My photography has atrophied too. Being restricted physically means that I have been restricted in what catches my eye. Potential subject matter is suddenly in short supply; in recent weeks it’s now mostly dwindled down to what can be taken inside the apartment or at the swimming pool: me, my dog, or the TV.

On Monday we’ll be in Philly for the pre-admission testing and to donate blood and I’ll be happy to get out in the world for a change of scenery. It’s déjà vu-ish that I’m going back to Philadelphia for this surgery twenty years after the other surgery on my spine. Back to the same floor of the same hospital with the same doctor, so maybe it isn’t all so big, wild and weird; maybe it’s a small world, after all.

2006-11-17T14:51:00.000-05:00

My surgery has been scheduled for December 6th. yay!

Aetna approved a fusion and one disc and we will pay out of pocket (GRRR!) for the second disc (assuming Dr. B. can pry the vertebrae apart far enough to get the second one in). I go down to Philly on the 27th for pre-admission testing, and to donate a pint of blood. We’re hoping that Tyler will be able to observe the surgery and maybe (if he doesn’t pass out!) take some photos during the procedure.

I'm working on a blog entry now, and will have many more details after the 27th.

Read this while we're waiting ...

2006-11-15T08:44:00.000-05:00

A link to an article about Dr. Thierry Marnay, the French surgeon who invented the ProDisc.

Still waiting for the confirmation phone call from someone named Melody that does the surgical scheduling. Keep it all crossed for December 6th!

Approval!

2006-11-14T12:41:00.000-05:00

Tyler just got a call from Maureen (who has been instructed not to call me, thankfully); a one level replacement and fusion were approved.

Yay!

This means that if Dr. B. is able to fit the second ProDisc in, we'll pay for it our of our pocket. Boo! But anyway, now we go back to the waiting game till we hear what the surgery date will be. I'm not holding out much hope that it will be before the holidays, but maybe ... I'm so numb from the waiting that it hasn't really hit me yet, and I think it won't until I'm actually in the hospital getting wheeled into the OR.

Health Careless II

2006-11-06T20:32:00.000-05:00

Got a call from someone named Melissa, Melinda, Melanie, whatever, some minion of Maureen (yes, this tactless clerk has minions). She was calling to tell me that the claim that was submitted to Aetna for the three level replacement was ... wait for it ... denied. She started to tell me that if I wanted, I could appeal. That was when I stopped her.

"Listen, I think you are missing some information," I tell her. I explain that we already knew about the insurance company denying the claim, as we'd been notified last week when we got our online statement from Aetna, but we didn't sweat it because Dr. B. had just told us that he was resubmitting two new configurations to them that had a good chance of being approved (since we'd be paying out of pocket for some of it). I was more than a little concerned because

a) When we saw Dr. B. on the 25th, he said they were going to get to work on it "right away." A week later is "right away?"

and

b) Maureen and her posse are the ones that are supposed to be up on all the insurance company stuff! That's what they do, that's their job. How come they didn't even know that there had been a change to what was being submitted? It didn't sound to me like they were working in the same office I'd been in the previous Friday. It also didn't sound like any of the new configurations we'd talked about with Dr. B. had even made it to the insurance company yet.

MM (Maureen's Minion) shuffled some papers around and said she didn't have my papers in front of her (then why was she calling me? To recite the same gloomy crap she says to every one else?)but that she would "look around" and get back to me.

I hung up and called Theresa, Dr. B's NP. Normally I wouldn't call her, since she hates talking to patients, but figured I would get her voice mail and so wouldn't have to have any actual interaction with her and of course I was right. I told her that I'd been to see Dr. Balderston last Friday (like she hadn't seen me hobbling down the hall with my cane and looked right through me, yeah) and that we'd discussed resubmitting two new configurations of the surgery to the insurance company, and why did Maureen and her minions not know of it since they were the ones that were supposed to get working on it "right away" last week?

I also told her that she was to tell that whole office, Maureen and all of her minions, to lose my phone number, that the last thing I needed was these women calling with all this negative news on top of everything else. Just call me when you've got it together, ok? Why do I have to be reminded every step of the way that I'm being shafted by the insurance company? I gave her Tyler's number to call back as I'd just as soon not have her get back to me, adding that she didn't seem to anxious to talk to patients either.

About a half an hour later, Tyler gets a call from a very apologetic Maureen, saying that she had just gotten the paperwork (explaining the various steps in between my appointment and her and her minions) and that it would be submitted tomorrow. Since we are coming up on the December 6th date that Dr. B. had penciled in for my surgery, the absolute last date we could get approval and still make that date is this Friday, the 10th.

So now I'm in another set of knots waiting for Friday, wondering if they'll hear back from the insurance company in time so the surgery won't have to be delayed again, and if it does have to be rescheduled, let's hope, for all our sakes, that someone besides Maureen or her minions calls to let me know.

A Straight Line

2006-10-28T08:43:00.000-05:00

Supposedly the shortest distance between two points is a straight line. Unfortunately, the shortest distance between me and the surgery I need seems to be a more zig-zagged trajectory, involving several different versions of what is to be done to me for the benefit of the insurance company, along with a liberal sprinkling of our cash.

After all the waiting to see Dr. Balderston, after all the anxious days and weeks wondering what was happening to my body, fretting over the insurance company delays and frustrated with not hearing back from anyone in his office, when he walked in and started off with his usual, “talk to me,” I could barely formulate a sentence. I was too terrified of what the answers would be to ask the questions I had. I’d been sick, literally sick to my stomach, for a few nights in a row, worried about the visit, and the outcome.

We looked at the xrays from September, and he showed me where the vertebrae had slid to the side (see picture below, click to see it larger), something that happened just in the last six months or so.

I also saw how the other disc had collapsed completely, leaving the vertebrae to grind together, bone on bone. Just below that was the disc that collapsed unevenly, causing me to pitch forward.

Click to see larger:

When I asked what the possible timeline was, he grimaced, saying he didn’t have a crystal ball, but then started to say something about how they had had “some luck” with some insurance companies by just submitting for the fusion (he had planned to fuse one of my vertebrae, the L3-4 along with putting in the two ProDiscs at L5-S1 and possibly L4-5 if he can pry it apart sufficiently) and then submitting that they were also doing an ADR and would the insurance company pay for the additional operating room time, hospitalization, anesthetic, etc., if the patient paid out of pocket for the surgeon’s fee for the installation of the disc and the cost of the device itself. I realize that he can't come straight out and say these things, but the hints went right over my head. Thank goodness Tyler was there and picked up on it. Once he told Dr. B that we would be willing to do that, Dr. B said they would start working on it right away, adding that it would still be another “few weeks at least.” He also said the insurance company personnel were “evil,” that clerks with little or no medical training were making medical decisions and trying to dictate what kind of surgery I and other patients in my situation would have, but that he would make sure that I got the configuration that I need, even if we have to pay for it (Somehow that sounds wrong, but oh well …).

So now they will resubmit to the insurance company for the fusion and one disc we will pay for the rest. It’s very scary and only partly because of the money we’ll be spending that the insurance company should shelling out. What also concerns me is that he doesn’t think we should wait for the insurance company to fool around, but rather that we should just go ahead and do something now, before it’s too late to do anything. This of course only adds to the anxiety that I already have about every step that I take putting me closer and closer to inoperability and never standing up straight again. He’s penciled me in again for December 6th and hopefully this time the line will go straight from here to there.

Everyone Knows Best

2006-10-26T07:17:00.000-05:00

I've got my appointment with Dr. B. tomorrow in Philly though I can't imagine he'll have any good news for me yet as far as the insurance company goes. More on that later.

Last week I had two, count 'em, two doctors appointments. I had to see the periodontist and the podiatrist (my orthotics are literally in pieces in my shoes, not good for someone who has trouble walking anyway). Yes, normally I would only schedule one of these appointments a week since I can't take the excitement of actually going outside of the one square block that I live on too often, but I threw caution to the wind as I thought when I made the appointments that I might be having surgery soon, so it would be a good idea to get all the other stuff out of the way.

I've been putting off all the other little maintenance health appointments (got the eye doctor next week, trying to make an appointment for a mammorgram too) because I just can't bear to explain to anyone else what's going on when they look at me and say, "What happened to you?!" I'm sad and depressed about it and it makes me sadder and more depressed to have to talk about it. So I have to explain as succinctly as possible what is going on and what is to be done about it. Then I have to hear their diagnosis/suggestions/war stories. I guess because back pain is prevalent that almost everyone has experienced it to some degree, almost everyone thinks they are qualified to offer me advice.

The periodontist (gum doctor) suggested I read this book, basically implying that my back problems are all in my mind. I might accept this, except that I've seen my xrays, and they aren't of my brain. As the hygenist was taking off my bib and raising up the chair (which I'd asked her to warn me if she was going to do and she did as she was ratcheting it, grrr!), she said, "So, are you going to get the book?"

That was Tuesday. Friday I see the podiatrist (foot doctor). More explaining about the cane and the way I'm walking, or not, and that no, surgery is not scheduled yet because of Aetna not approving this surgery. His advice? Go to other insurance companies that are approving it and get letters to send to Aetna proving that they are not up to the standards of care of these other companies. He looked at me like he was surprised that I was not writing it all down. I just smiled, nodded and said, "Ok." I didn't even want to launch into the story of how NO insurance companies are paying for it, officially anyway, because he probably would have spent a lot more time lecturing me on how to get around that. But, *sigh* I'm getting very good at steering people away from the subject of my situation and brought up the reason I was there, my orthotics, to divert him.

So tomorrow I see Dr. B. (spine doctor) and hope to at least get some additional information on the surgery since it doesn't seem like there's been any developments on Aetna's side of things yet, as Maureen hasn't called to rub it in, er, I mean tell me about it.

The Queen of Denial

2006-10-20T15:03:00.000-05:00

Maureen should not be allowed to talk to patients.

As I said here, according to Maureen, my clain with Aetna will be denied/rejected/refused/disallowed/declined. Then once I get the letter saying a resounding and predicted-numerous-times-by Maureen "NO," I have to decide how I want to appeal. Of course, as you may have read in the last post, this news threw me into a panic. I don’t know the first thing about appealing anything to an insurance company. Do I get an attorney? I’ve seen this kind of thing in movies and on Dateline, no one wins appeals against insurance companies!

So I asked Tyler to call and see what he could find out; he always has better luck getting info. For some reason, none of the staff in Dr. B’s office seem neither to want nor be even slightly equipped to actually communicate with patients. He spoke with the ever elusive Theresa, Dr. B's NP, who tried to immediately transfer him back to Maureen. Once he was allowed to get a sentence out, here’s what she told him about the whole process:

Every insurance company is rejecting any claim for more than one level of ADR. Once they reject mine, Dr. B has attorneys that will handle the appeal and on top of that, he sits on a board that advises insurance companies about the need for surgery, so he's confident that he'll be able to get two levels. In addition, he has several different permutations of the procedure that I need that will get appropriate payment for the hospital (such as charging a bit more for one disc to help offset the cost of the second, etc.) so that I will be assured of getting the two discs I definitely need. If worse comes to worst, Tyler said that we will pay out of pocket for the second disc (buy those t-shirts, people!). It’s all very confusing, not made any less so by the machinations we have to go through to get someone who will actually take the time to look at the big picture and then explain it to us. I guess it is really too much to ask to have someone be a little encouraging and optimistic when speaking with patients who are terrified and in pain, unlike Maureen, the humorless Queen of Denial.

Update

2006-10-16T13:27:00.000-05:00

I just had a call from Maureen. She said she heard from the "nurse" at Aetna and that they were sending my file to the Medical Director for review. What does that mean? Maureen said she would be "very very surprised" if the claim was approved because Dr. B. put in for a three level replacement. She said she has never ever seen any insurance company pay for more than one level.

So what's next? She said once they deny it, I'd get a letter saying so and telling me what the appeal process is so that I can proceed with my appeal. My appeal. I asked what that meant and she said that they'd sent all the clinical information to them and on the appeal it was up to me to say what I think the appeal should be. Then she hemmed and hawed and tried to get off the phone. Can anyone explain this?

I'm lost, and sick with discouragement.

2006-10-16T12:23:00.000-05:00

Friday morning I get a call from Krista (yes, now I'm naming names!) in Dr. B's office. He had to cancel the appointment for Friday. When she said it I tried not to react, even though my heart fell to my feet again, as it does whenever they call. Tyler says I would be great in a political campaign spinning mundane things about the opposing candidate into the biggest negative news stories because I always immediately think the worst, like they are cancelling the surgery, for what reason I can't imagine, but that's what I think. Anyway, I didn't say anything and neither did she for a few long seconds till she finally asked if I wanted to reschedule. Um, YES? She says the earliest appointment I can get is for the following Friday, the 27th. Of course I agree to it, but I am thinking that October 27th for a follow up appointment does not bode well for an early November surgery date.

Since Maureen (yes, more names! I don't care anymore!) was supposed to call me back at least two weeks ago and never did, I call Tyler and ask him to call and find out what the heck is going on. Also by now the disappointment has set in and I'm crying my head off, not the best frame of mind to try to talk to a doctor's office. Tyler calls and leaves a message and no one calls him back, so he calls again and gets Maureen on the phone. She doesn't remember why she didn't call me back but says that they haven't heard anything at all from Aetna so there would really be nothing to talk about at an appointment anyway. Well, isn't that lovely and casual? It's only a week, right?

No big deal.

Except I was living for that appointment, I was looking forward to it as though it was some kind of a milestone, I thought we'd be in the home stretch after that. A week is an eternity to me, as I'm not getting around too much at all anymore, the days are dragging like you would not believe.

2006-10-11T16:13:00.000-05:00

I hate just waiting for time to pass.

There's nothing I can really do until I go to see the doctor next Friday. As I've said before I have mixed feelings about this appointment, on one hand, wanting to go and ask questions and be reassured that I will indeed be having the surgery and perhaps even given a date for it. On the other hand, (and I hate this hand), being told that maybe Aetna hasn't responded, or worse, that they have rejected the request and we'll have to appeal. Last time we were in Dr. B.'s office, he left us with the impression that they knew how to "work the system," meaning they'll wheel and deal with the insurance company to get the operation covered. I hope they know what they're doing.

It doesn't help, either, that I called the woman who is supposedly in touch with the insurance company and is supposed to be coordinating all this to see if there was any other information (like the fact that I was just approved for SSDI) that might help. She said she'd call me back and hasn't, which just makes me crazy. I was saying to my husband the other night that this is just like dating. Do I call back? Why didn't she call me? Maybe she's busy, or maybe she's sick, or maybe I'm never having this surgery and I'll be in a wheelchair soon.

If I got a date for the surgery, then I could start planning; I could start to line up who's going to take care of Tony, maybe get some new pajamas to wear, get my hair cut and my legs waxed in anticipation of a two week hospital stay. But for now there's really nothing I can do except wait for time to pass.

2006-10-09T13:51:00.000-05:00

We spoke to Dr. B's office last week with questions about my activities. Last time I spoke with him he told me to stay strong and stretch, but things are going downhill, literally, by the week so I was worried that my efforts to stay active were somehow harming me. Tyler spoke to Theresa who said that pain aside, swimming was good (check) and that I should not be doing anything high impact (yeah, right, there goes that Salsa Step class I was signed up for) or carrying any weights. I've switched my upper body workout from free weights to machines to give me a bit more support, as I'm now afraid that bicep curls have been wearing down my discs. That's ridiculous, of course, I know that, but still.

I go back to see Dr. B on October 20th and I'm terrified that after all this time I'm going to either be denied by the insurance company or my discs will have deteriorated to the point where the disc won't physically fit. I'm anxious beyond belief about this, but all I can really do is wait it out till next week, something I've never been good at.

Doc Guide article on ProDisc: Better than fusion!

2006-09-29T07:38:00.000-05:00

Here's a great article on a study involving ProDisc that reports even more impressive numbers than the FDA.

Money stuff

2006-09-20T08:36:00.000-05:00

I'm disabled! It's official!

Right. Normally, I wouldn't celebrate this kind of news, but when it means getting some money, at this point, I'm all for it! I love Mr. Tingle in all his Dickensian/Kafkan splendor, as I believe that he, along with my doctor writing a letter stating that I was indeed non-functioning, was a large part of my being approved.

Just this past weekend, with the realization that even if Aetna pays for everything, they won't pay for everything, as our plan only covers 90% of in-patient/surgical care, I've finally gotten off my ass and set up an online shop to make some money and help out with day-to-day stuff like paying the dog walker, since I can't walk Tony as much as he needs, and to partially subsidize the cabs I have to take to go even a few blocks.

Money, and the lack thereof, has always been a sore subject for me, so to ask people to buy my stuff to help me out is hard, but I hope soon I can celebrate getting some money for something besides being disabled (hint hint).

Busy Busy Busy

2006-09-14T17:22:00.000-05:00

The other day I was apologizing to a neighbor for not stopping by to see him (he just got out of the hospital) and I actually had the nerve to say that “I was busy.”
“Busy” is relative and it means something different to someone who just got out of the hospital than it does to someone who is working 9-5, going to night school and taking care of a family. And it means something different to me too, somewhere in between the continuum of my recovering neighbor and the school-going-working stiff-nine-to-fiver with kids.

I get up after a few Tylenols and get to the kitchen. Holding on to the counter with one hand, I get a bowl, plate, cup, tea bag, fork, a cup of Egg Beaters and one egg and one piece of non-fat cheese. I lean on the counter with both elbows while the water boils, and the scrambled eggs cook. Carry the whole thing back to bed, the plate stacked on top of the tea mug in one hand, cane in the other.

After breakfast I can usually manage, with the help of the cane and making frequent rest breaks, to walk Tony around the block once. It’s not fun, but it’s fun; I like bumping into other people and other dogs and getting fresh air in the morning. Then I need about one to two hours rest. After that, I might go to the gym, which is easier for me than it sounds. The machines I use support my spine and I’m able to get a good upper body workout and even ride the recumbent stationary bike. I think sometimes people think I’m faking or something, as they see me pumping iron and pedaling away, then hobbling home all slow and bent over. I can do a lot more stuff when I’m sitting, I just can’t stand up or walk.

When I get home, I’m in pain, (not so much from the exercises as the walking and attempted upright movement) so I take something, a few extra Neurontin, or an Ultram. Then I have about an hour or two of rest, food and tea. I usually feel better and a bit “distanced” from the pain, so I might decide to tackle some household project, like a load of laundry. Or emptying and restacking the dishwasher, or running the Swiffer dust mop over the floor, or starting dinner. Or maybe all of the above. These aren’t big chores, you probably do them everyday or at least a few times a week without even thinking about it, maybe while you are also doing something else, like talking on the phone, or feeding your kids, or at the very least, not holding on to the kitchen counter to keep yourself upright. Since I’m not really feeling the pain, and as long as I have the cane or furniture to hold on to, keep going, I say to myself, take advantage of the window of painlessness and get some things done so Tyler doesn’t have to come home to a mess.

Invariably, when the pills wear off, I’m lying in bed later in the evening, barely able to go get any of the dinner I made. Maybe you’d think something you worked so hard for would taste better. It doesn’t. Or maybe it is just the pain medication and my exhaustion by the end of the day that takes my appetite.

That’s pretty much how my days go.

Every once in while, something different, a new challenge, pops up in my schedule. For instance, I had a dermatologist appointment yesterday. Then another day I took the shopping cart (I lean on it like a walker, genius!) to go a block and a half to get dog food. I try to only have one big event like that a day. Sometimes I attempt more than one (in a quest to be truly “busy” and distract myself) and pay for it all the next day with forced bed rest.

Sorry to ramble with such a long post; I’ve gotta go now, cause I really am busy. I’ve gotta go take shower.

2006-09-14T12:25:00.000-05:00

Just had a call from Dr. B. He didn't say anything about me developing another curve in the lumbar region, but he did say that L3-4 has "really slid to the side." I sure wish I could see what the hell that looks like. He said because of that, this level will most likely be the level that gets fused. I'll be seeing him again in about a month's time (appointment for October 20) so hopefully I can see the x-rays then, cause I'm really curious as to what a sliding disc looks like.

L5-S1 is "perfect" for a prodisc and since this is the lowest level, it will restore my movement to my hips. L4-5 has "collapsed axially" meaning this is the one that is pitching me forward. That will be replaced as well; it is hardly worth going through this surgery and not being able to stand up, is it? At least not for me.

He said stay as strong as possible and try to do as much stretching as possible without hurting myself. I'm off to stretch!

2006-09-13T12:45:00.000-05:00

Just talked to Balderston's NP. I called yesterday and left a message; I wanted to have a brief conversation with him about the xrays that I had on Friday after seeing him. She said that he'll call me, maybe tomorrow as he is out of town today, and tell me what is going on at each level in my spine.

Of course, even though I wanted this conversation, now I'm frantic, a little, wondering why he needs to talk to me. Why couldn't he just give the message to her to give to me that the xrays look fine or they look like they expected them to look? Cause maybe they don't, that's why!

It could also be that they took xrays and it is normal to discuss the results with the patient, especially one going into surgery (fingers crossed!) in a few months. It could be that I'm getting the attention and information I deserve; but then the doubting chatter swells up louder and I wonder, "what if there is another curve?" "What if there is some other problem that will prevent them from doing the surgery?" "What if I'm destined to walk like a hunchback, for ever shorter distances, forever?

All I can do is wait for him to call me and hope that it is tomorrow.

Jesus, this is worse than dating ... no wonder I'm a wreck.

Almost there

2006-09-09T09:37:00.000-05:00

We traveled to Philadelphia yesterday for my 8am appointment with Dr. Balderston, nineteen years almost to the day after he did my scoliosis fusion on September 4th 1987. Have I mentioned that this doctor holds a special place for me? He changed my life nineteen years ago and he’s about to change it again, in a big way. Rose petals should be strewn in front of him when he walks and beatific music, like angels singing a joyful chorus, can be heard. Do I even have to tell you that when I look at this doctor, I see a halo, an aura of golden goodness of hope and freedom from pain and disability around him so bright I almost have to turn away? Almost.

Ironically or maybe coincidentally is a better word, the two days leading up to the appointment were particularly hard for me. Trying to pack one little bag for an overnight trip to Philly for two people took the better part of the afternoon on Thursday; go to the bathroom for the toiletries, then walk into the kitchen to get a plastic Ziploc bag to stuff them in. Find out, after walking back to the bathroom that they don’t all fit in the zip bag, so throw them into a small Duane Reade bag and tie it shut as though it was some stinky garbage. Then hobble to the bed and lie down and rest for thirty minutes. Get up, go to the dressing room; get t-shirts and underwear for me and Tyler. Walk to the bed, sit down and fold them and put them in the overnight bag, lay back and rest for another twenty minutes. Make several more trips to get jeans and t-shirts, a sweater, Tyler’s electric razor, sunglasses, maps, but of course not all at once; repeat packing and resting routine till I’ve got everything in the bag, which I can’t lift or carry, by the way, and I collapse in pain and exhaustion on the bed at 6PM. I started at 3.

Dr. Balderston always starts out an appointment by asking me to “talk to him,” tell him what’s going on. I was sitting on the exam table, leaning forward and supporting myself with my hands on my knees, explaining that I could no longer hold myself up, by myself, at all, anymore. He told us that ProDisc was approved.

Really? No kidding. It’s not like I hadn’t spent a lot of time obsessively refreshing the FDA website or waiting for the daily Google alerts we’d set up for ProDisc and Synthes. He added that it was time now to submit this to the insurance company and “do something about your back.” Do I have to tell you that the aura brightened to an unbearably bright corona, the kind you can’t look straight into or you’ll damage your eyes forever, and I swore I could hear a chorus of angels singing, their voices swelling with joy as he said it?

He said he’ll ask them for approval for a three level replacement. Starting at the bottom, L5-S1 will be replaced, restoring movement in my hips. Then L4-5 will “probably” also be replaced, and L3-4 will “probably not” be replaced but fused. The reason for the questions on the other two discs is not financial or bureaucratic but anatomical; it depends on how much those discs have collapsed and whether or not the ProDisc can be physically fit in to the space between the vertebrae.

I asked him to take a look at my back, and pulled my shirt up so he could see the lumbar region, the place where I’m afraid I’m developing another scoliosis curve from being so uneven all the time, my right leg buckling under me and leaning on the cane and whatever else I can find to get around with. He said nothing about what he saw or didn’t see and just responded that he was sending me for x-rays as a first step in going ahead with the surgery. Of course now I’m frantic, over analyzing his facial expressions (or lack thereof; he’d be a formidable poker player) and inflections when he said he wanted x-rays, because now I’m thinking that if it is possible that I have the start of another curve down there, the ADR surgery is out.

So all this is maybe coming together for a surgery date in early November. He mentioned Monday, November the 6th as a possible date. I was stunned that we were at the point already where he had a date in mind. I joked that I wouldn’t be able to vote on the 7th and he said, totally straight-faced, that I could do an absentee ballot ahead of time, like I was really concerned about that!

When he stood up and said that he was going to start the process “right now,” I burst into tears, blinded by that damn halo again.

Now again, hold your cartwheels, for there is no guarantee that Aetna will come back with the decision we want, or any decision for that matter, by early November. Still in all, the ball is rolling, and this is great news. Above all the voices of doubt and fear chattering away in my head, I can still feel the warm glow of hope and almost hear those angels singing. Almost.

Patients/Patience

2006-09-03T14:43:00.000-05:00

Did you ever hear the old pun, "I wanted to be a doctor, but I didn't have any patience (patients)?"

I had just about given up on talking to anyone at Dr. B's office without exploding into an angry tirade, so I had Tyler call. Here I mentioned that it had been a week since I'd called right after the announcement came about the FDA approval and hadn't heard back. Just after that entry, I called again, this time asking to speak with someone in scheduling for Dr. Balderston intstead of his NP, (who really is handling all of this very poorly). I spoke to someone who we'll call "K" (no allusion to Kafka or Joseph K intended), who was very nice and understanding when I explained that the not calling patients back business was unacceptable. When I'd called the Thursday before, they said they would call back. Ok, so when someone, especially a doctor's office says that they will call you back, I sort of expected a call back within a few hours or at least by the next day. K explained that the reason no one called is because they were all waiting to meet with Dr. B. and his NP to decide who would be seen and in what order and that both Dr. B. and his NP had been and were still out on vacation and wouldn't even be back until the following Monday.

Well, OK! Why couldn't someone just have called and told me, and the other frantic patients, that? Do any of these "administrators" have any idea what it feels like to need an operation to be able to stand up straight and walk any distance and to be free of pain and then to have the doctor's office who is supposed to do the surgery NOT RETURN A CALL? It feels like you've fallen through the cracks, like maybe you need to start all over with another doctor after all this time, or like you are doomed to just get worse and worse till you are finally riding around in a wheelchair with really strong arms. I told K that she wasn't working for some five-star snooty New York restaurant that could have an attitude and not return calls if they didn't feel like it, this was my doctor. My doctor! To not have a return call from a doctor's office for 7 whole days is unconscionable. It's not like I call all the time and harrass them. K assured me that as soon as they all met and decided who would be getting appointments, they would be calling us all back.

OK.

A whole other week goes by and now I'm out of patience, thinking that I can't stand it, that I would be able to stand it if only someone would call me and tell me that I'd have to stand it another few months, another six months, another year, ok? But just freakin' call me back and tell me! I understand that they were probably swamped with calls, but as I said here, hire a freaking temp nurse! It's not like they weren't anticipating this kind of reaction from their patients. We're desparate, for crying out loud! We're all in pain, and in various states of disability, can anyone blame us for being impatient about when we might have surgery?

The end of this tale does have a sort of happy ending and here it is. When Tyler called on Thursday (a full two weeks after I called the first time: Shame on them!)K immediately said that Dr. B. wanted to see me and launched into a list of available appointments. When he asked what the delay was in calling back, she said that they'd just gotten the list together that morning. Whatever.

Ok, the windup is I go this coming Friday at 8AM. I don't know what he's going to tell me, but at least I'll get some face time and get some questions answered and even if he tells me it is going to be more of a wait, at least I'll be able to have patience.

HealthNewsDisgest.com on ProDisc

2006-08-22T07:59:00.000-05:00

Here's a very informative, well written article about the ProDisc and the ADR surgery.

Hurry up and wait

2006-08-21T17:56:00.000-05:00

As usual, I jumped the gun. Of course I was so happy to see the news release about ProDisc's approval by the FDA that I just skimmed the part where they said it was approved for "single level" use.

I need two.

When the Charite disc was approved a few years ago, it was also only approved for single level use, but doctors began using it for multiple levels almost right away through something called "discretion." I'm *so* hoping that this can get worked out so I can get my life back.

I'm waiting (since last Thursday) to hear back from Dr. Balderston's office. I'm sure that they are getting deluged with calls about people wanting to find out where they are on the waiting list, but guess what? That's not my problem. Do you think they might have anticipated something like that and maybe prepared for it by hiring a temp or something to respond to everyone? But no! The horrid NP that acts as gatekeeper for Dr. B. seems to think that the best way to manage patients who are in pain and terrified is to ignore them. I can tell you that I am livid with anger at not having my call returned in three days' time! Sure I know they're busy, but come on! If you can't deal with patients, get out of health care. I'm calling again tomorrow to schedule a phone appointment, or, because in October it will be six months since I've been seen, a real appointment, with X-rays and everything.

I'm more scared now than I was a few months ago, I think because I may be closer to getting denied by the insurance company. In some ways, it was almost better to just be in a limbo, forced into believing that I'd have the surgery soon, than to be confronted with the possibility of having it taken away.

Broken but probably fixable

2006-08-16T15:32:00.000-05:00

As I reported last night the FDA has finally approved the ProDisc artificial disc replacement for use in the US to treat Degenerative Disc Disease.

"What does this mean?" you may ask. It means that I am one step closer to being fixed, and that means being able to walk without pain in my back, hips and legs and being able to stand up straight and support my upper body weight without the use of a cane and even walk without panting for air and becoming exhausted. This all sounds like the golden strains of some heavenly music to my ears.

Not to be a wet blanket or anything, but let's not start turning cartwheels just yet (those of you who can, that is). This is the all important first step in the process that will culminate in me having surgery and fully recovering. Here comes the but ... it is the first step. I'm not the first person on a very, very long waiting list to have this operation, and we're not sure our insurance will pay for it.

That second step is a doozy, as they say, and could be the deal breaker here. When I talked to Dr. Balderston last winter, he told me that Aetna "has paid for it" in the past (during clinical trials), so let's keep our fingers and toes and eyes and legs and anything else you have that's crossable twisted up like a pretzel, so I can be fixed. For sure.

FDA Approves ProDisc!

2006-08-15T17:29:00.000-05:00

Yay!
Read the news item here>

Synthes - Prodisc news

2006-08-14T18:12:00.000-05:00

Well not so much news for me, but the company's earnings and the stock both continue to go up ahead of the FDA approval, which can't come soon enough for me.

How I feel vs. How I look

2006-08-14T17:56:00.000-05:00

Here's how I feel:

Here's how I look:

Blink of an Eye

2006-08-03T17:38:00.000-05:00

I attended this event last night, one of about three social events I've been to in the last 7 and a half months. It was fun, if draining; I stood for far longer than I should have, even after I felt the pain and exhaustion begin, like a little child who is too sleepy to keep her eyes open yet still insists on waiting up for Santa. I did this because I was excited to be out and see some people for a change and have some fun, and at things like these n one really sits down, you walk around, you mingle, you make the rounds. Since I'm not too good at walking the other two didn't come very easily for me. Thank goodness for a few really nice people, good friends, who brought me food and drinks and walked slowly around with me or sat with me when I could no longer hold myself up.

Sometimes I feel so conspicuous with the cane, like everyone on the street is staring at me. (That wouldn't be because it's festooned with stickers and, sometimes, a bacon air freshner? No!) Last night, aside from my friends, I have to say I felt sort of invisible. Part of that, well, probably all of that, is my own doing. I'm very self conscious about the cane and the way that I appear, all hunched over and leaning to one side, probably more self consious (and rightly so!) in a room full of photographers. I was reluctant to approach some people to introduce myself; I can't help projecting my evil thoughts about myself into their minds, "Yuck, who's the gimp?" or "What's wrong with her?" To make matters just a bit worse, a few people, who I thought I knew and thought I liked, seemed to pointedly ignore me.

Again, this might just be my own distorted self image working overtime, but in case it's not, it isn't the first time I've experienced something along these lines (ref. here); some people just seem to not want to be around someone who is not well. They don't know what to say, they feel uncomfortable being reminded of their own mortality, or they're just so self-absorbed that they simply can't be bothered. Whatever the reason, whoever's fault, I still felt that some people at Blink of an Eye had theirs closed.

My Trial in Bleak House or An Amerikan Carol

2006-07-25T17:38:00.000-05:00

Let me sum up my experience with the SSDI doctor, er, I mean “medical consultant” with a tagline, the way they do in the movie biz: Kafka meets Dickens. If this doesn’t sound like a movie you’d go to see, just imagine being in it.

I exaggerate.
It really wasn’t all that bad, if you don’t count the two times I almost started crying: once when the medical assistant told me to stand up straight so he could measure me, which of course I couldn’t do (I used to be 5’5, I am now only 5’2 because of the stooping forward-ness) and again when the medical consultant told me to walk without the use of the cane, which I also couldn’t do without bracing my hands against my thighs.

I arrived at 9:13 for a 9:30 appointment, even though I had been warned by SSDI not to arrive early. The time of my entrance, whether transgression or simply a bureaucratic requirement, was noted on the bottom of the paperwork I brought with me and which followed me from room to room throughout my exam. I was first taken in to see the psychiatrist. He looked like an aging hippie; he had long grey hair and was wearing a guayabera and sandals with socks.

I explained that I had Degenerative Disc Disease and he asked me if I had ever “used one of these,” proudly whipping out a pillow from behind his back. (See this ) I had to bite my tongue to not tell this guy just what he could do with his smelly old hippie pillow while his hand was back there. He then gave me a list of five things to remember for a few minutes later, which I am surprised and slightly afraid to admit, I could only remember four (was it boy? a car?).

I think he must have nevertheless concluded that I was in my right mind, as he allowed me to exit his tiny windowless room and “make myself comfortable” in the quite large and at this point completely empty waiting room down the hall. There were five rows of 8 blue plastic chairs each and one wall was unaccountably covered in large mirrors with a metal hand rail screwed on, like some kind of jokey ballet barre. The walls were painted a dismal sickly yellow, as were all the walls throughout the office and festooned with sheets of white paper on which had been boldly printed a number of instructions and admonishments in several languages: “Absolutely No Cellphone Use,” “Stop at the front desk on your way out” and in huge letters, “DO NOT MOVE CHAIRS.”

Just as I was reading the “do not move chairs” sign the medical assistant came in and began to move the chairs, straightening the rows with painstaking precision. In the front corner a TV sprouted from the wall just out of reach of any of the disabled folk who would find themselves waiting there. I suppose having some kind of disability is not enough, we have to be made every kind of miserable there is by being held captive for an interminable period in a room with TV but no cable (OK, shades of Sartre here, I couldn't resist). It was tuned to a local channel playing one of those courtroom shows, and not even one of the well-known ones, like Judge Judy, but some lesser-known-also-ran-wisecracking-no-nonsense judge with what seemed like, at least for the 10 or so minutes that I sat in the room, a docket exclusively made up of strippers and former strippers suing each other over various broken contracts and infractions. The program was interrupted by commercials for ambulance chasing law firms and, ironically, disability attorneys.

Just as I was beginning to get interested in a case involving a sexy dance class teacher (and ex-stripper) and a former student (and current stripper), my name was called quite loudly from just over my shoulder into the empty waiting room. I rose and was shown into a room just a few feet from where I was sitting by a bony, bird-like man with a stretched out pointy nose and thin extra-long fingers who I could have sworn said his name was Mr. Tingle. Of course, I was unable to ask him to repeat it for fear that I had heard correctly and his name was, in fact Tingle, and for fear of the irrepressible laughter that would have surely been produced had he repeated it.

Mr. Tingle, as we’ll continue to call him, for no one is looking or listening now, proceeded to ask me questions about my condition and take sloppy notes on a white pad (yes, they looked like chicken scratch! I was avoiding it, too obvious) which he then dictated into a small tape recorder that had been lying prominently in front of me, face down. I just assumed when I walked in and sat down that it was on and recording our conversation, and mentioned the same to Tingle when he first picked it up, to which he responded, “that wouldn’t be very ethical, to record someone without telling them!” I tried to joke in reply, “Hey, who am I to argue with the government?” Tingle cracked a tiny smile, revealing widely-spaced teeth encrusted with what I can only compare to barnacles.

He proceeded to dictate with, and I kid you not, the speed of an auctioneer, his lips barely moving and his barnacle teeth not impeding the rapid-fire flow in the least. I couldn’t really catch most of what he was saying except for the occasional comma or period, each of which he pronounced with the appropriate amount of pause. What I did understand, to my great surprise, was that he seemed to be inexplicably translating everything I’d told him into the most catastrophic terms imaginable. Was that what I said, I wondered? Was I really that bad?

When he was finished with me I stepped out into the waiting room, now half filled with a collection of men, some walking with canes, others moving about quite ably and socializing. No one was stretching out at the barre or changing the channel on the TV. I stopped by the desk on my way out, as I had been instructed by Doctor, oops, Mr. Tingle the “medical consultant,” and reminded to do so by the numerous signs on all the walls.

As I stepped outside and used my cane to flag down a taxi, I started to get paranoid. What if it was all a trick, with Tingle beefing up my symptoms in order to elicit a confession from me that I was making it all up? Was I making it all up? Had the hippie psychiatrist with the pillow really only given me four things to remember? Would Tingle expose me, the way “someone must have traduced” Joseph K?

Of course not! The cab rattled along and my aching spine reminded me that I, indeed, was not making any of this stuff up and that if Tingle wanted to act as my “mysterious benefactor” and make it easier for me to be disabled, then so be it. Hey, who am I to argue with the government?

People say the dumbest things ...

2006-07-21T15:00:00.000-05:00

Is it just that I’m now a crotchety disabled person, or are people really this stupid? I’ve been told that I have a great attitude (just again the other night, so, there!) and I generally keep a smile on my face, but it’s hard enough with everything I’m going through then to have to deal with comments/questions like the ones that follow, and yes, these are actual things that have been said to me. I've written out my imagined responses for your reading pleasure and also as a warning. If you see me, please oh, please DON'T say any of these things to me, or at least don't expect me to smile at while you say them.

A neighbor, upon seeing me shuffling along with my cane: "Oh, is your back really that bad?"
Me: “Oh, good gracious, no! You know how it is, I really like to walk around with the cane, it slows me down so delightfully, I think I’ll never be without it again!”
Alternate response: “Sshh! I’m faking it for the sympathy! Now get the door for me before I nail you in the shins with this thing!”

A neighbor, upon seeing me shuffling along with my cane: "Are you still waiting for surgery?"
Me: “Actually, I’ve had myself taken off the list for surgery; I’m finding walking around in pain and exhaustion incredibly uplifting. Do try it, it’s better than yoga!”

A neighbor, upon seeing me shuffling along with my cane: "How’s your back?"
Me: “How’s it look, asshole?”

A neighbor, upon seeing me shuffling along with my cane:"Have you tried yoga/a chiropractor/acupuncture/swimming/stretching/physical therapy?"
Me: “Have you tried being a sentient being? Dear GOD, can you see that I can’t hold up my upper body on my own? Why don’t you figure out how much your upper body weighs and then carry that weight around in a backpack on your back and see how able you are to do yoga/swimming/stretching, etc. And don’t get me started on physical therapy. I’ve made more progress on my own than I did with the PT harassing me about ‘making progress’ with her cookie cutter ‘back strengthening’ program that was causing more damage than good.”

A neighbor, upon seeing me shuffling along with my cane: "Glad to see you are improving!"*
Me: "What are you comparing it with that *this* looks better than anything? I mean sure, at least I’m up out of bed, but I’m walking like an old crone with a bag of sticks on her back, all bent and slow. Even though the pain is better, the walking gets worse by the week. WTF?"
*Special note for blog readers, don’t come here and just skim the entries and then make a thoughtless comment like the one above. It's just insulting is what it is, and it really pisses me off.

Wanna know what TO say? Compliment my cane, my attitude, my smile, my hair; things like that are a LOT easier to smile through.

SSDI Medical Exam

2006-07-16T12:35:00.000-05:00

I have an exam with a disability doctor on the 24th, which I am not looking forward to. I'm sure it will be a singularly frustrating experience, as has all the rest of my dealings with SSDI. Does the fact that they've scheduled me for this mean that they don't believe that I really am disabled, or is it, as the Disability Secrets website claims, because I haven't been to see my doctor in a month (though I did have a phone consultation with him two weeks ago, that should count)?

Synthes US approval for ProDisc Expected Soon

2006-07-06T09:22:00.000-05:00

According to this, US approval for ProDisc should be coming very soon. Yay!

Upright Citizens

2006-06-27T17:39:00.000-05:00

Here's an interesting article in the new National Geographic about how walking on two legs is the root of all evil. Well, almost. "The Downside of Upright" claims that it is downright impossible for us humans to walk upright! Yet walk upright we do; *ahem* some of us more than others. The article states that the plethora of back, knee and hip difficulties, as well as the risks of childbirth suffered by us bipedals could be largely avoided if we gave up the whole "free hands" thing, grew our arms longer and walked on all fours. Our spinal column originally evolved as an arch, not the weight bearing column it acts as now.

... the lower region of the [vertebral] column suffers from the excessive pressure and oblique force exerted on its curved structure by our upright posture.

In my case, and how.

Basically, the vertebrae in the back are wedge shaped, this shape being most pronounced in the lower back. These wedges, along with the "S" curves in our spines (developed in response to an upright posture) and with the discs in between the vertebrae, is what allows us to flex and twist and bend.

In my case, at least one of my lumbar discs is narrowing at the front, causing me to pitch forward. The cause of the narrowing, is of course, Degenerative Disc Disease, which I already knew, but it doesn't make standing upright any easier for me, in fact, it's downright impossible.

Flatback Syndrome

2006-06-22T08:41:00.000-05:00

This is why I can't stand up straight. Lovely.

2006-06-13T16:10:00.000-05:00

It’s been six months to the day that I’ve been cooped up with “the back” and I find myself falling further and further away from what I want my life to be like. It is not just that I can’t get around well and feel so limited and exhausted by everything, it is as if I really can’t do anything, or maybe rather, why should I bother with anything?

Oh, yes, I still manage to get a shower every day (it is quite a production and so takes up a good chunk of time and I’m a big fan of anything that passes the time) and clean up the kitchen and start dinner just about every night, but I’m not enjoying any of these things as much as I used to. I spend a large part of the day now surfing around on line and watching TV, even though I hate to admit this. I’d like to write more, study German, learn to draw, but then there’s that nagging, “why bother?” Part of me maybe feels like whatever I try is going to be half assed and limited, the way my body is now, and if it is, well, then, I’ll feel even worse.

I feel really sorry for my husband, who gets to come home from work and finish whatever tasks I’ve started and tired out before completing (putting laundry away, emptying the dishwasher, finish cooking dinner), plus everything else he has to do (walk the dog, take out the trash, clean up after dinner) and then wait on me cause by nighttime I’m usually done in, worn out, and having a lot of trouble moving in any way from trying to physically, literally, hold myself up all day. Besides, with him here, it’s even easier to say, “why bother?”

Today, I imagined the doctor’s office calling and saying that they wanted to schedule the surgery. I thought about them saying it would be in four weeks and I fantasized that I said, “Well, it’s a long way off, but at least I know there’s an end in sight and I can start planning.” I was excited in this daydream, and happy, even though I was scared and dreading being cut open again. The mood in my mind seemed to match the clear sunny sky outside and the warm hydrangea-scented air coming in the window; hopeful and smelling of promise.

The afternoon turned hotter, stickier, and I had to rouse myself long enough to put the air conditioning on. I tried to return to the fantasy, to the imagined phone call that made me so happy, but it was too late; sharp, frigid air was flooding the room, replacing the soft sweet breeze that smelled like something good would finally happen. I guess I could have closed my eyes, and tried harder, but why bother?

2006-06-06T09:51:00.000-05:00

Things I’m going to do when this is over:

1. Wear high heels. A lot.
I’m gonna teeter around in a dainty way and shift my hips ever so slightly to and fro and admire the heck out of the muscles in my calves and look at how nice and slim my ankles are. Plus, I’m sick of sneakers.

2. Go to a store and shop (maybe in high heels). See also #1.
I’m tired of ordering Q-tips and moisturizer from Drugstore.com. Yesterday I ordered new sneakers from Amazon because the mere thought of going over to the Sports Authority or Paragon exhausted me. (I went with Tyler to Century 21 on Memorial Day. Big mistake. We left in tears. Both of us. Ok, not really, but it was pretty bad, packed with rude people from the outer boroughs or somewhere not civilized where I can only assume no one uses canes because I had mine kicked out from under me more times than I can count by some fatass on their way to buying an XXL golf shirt).

3. Walk Tony (maybe in high heels). See also #1
Our dog walker is great. Her name is Shirly and she comes everyday at 3PM to take Tony to the dog park. I miss going there with him; miss laughing at his antics and miss seeing his pure dog-joy when he’s playing with all his dog-friends. If only we humans had some equivalent to being let off a leash and running around romping for an hour.

4. Walk. A lot. Maybe in high heels! See also #1
I’m tired of having to take cabs everywhere because walking the two blocks to the subway is just too far. Even going around the corner to 10th and 23rd to catch the crosstown bus to go to the subway is a trek.

5. Go back to NYSC at 8th Ave. I froze my membership there and joined the gym in my building since it is just around the corner. The London Terrace Health Club is fine, just fine. They have pretty good equipment and it is never crowded when I go (midday, midweek). But the ceilings are low and there aren’t a lot of windows and they don’t have the seated leg press machine I like (and can use) and they don’t have the individual TVs at each cardio machine. I miss Jerry Springer and all the bad VH1 documentaries and reality shows I used to watch while pedaling away and raising my heart rate into my target zone. I only joined the gym here for three months, cause hopefully within three months I’ll be having the surgery. *I still can’t get over the fact that I can exercise but I can’t walk or stand up straight without panting from exhaustion.* Weird, huh?

6. Dress nicer. I live in yoga pants (cause they’re easy to get up and down after going to the bathroom with one hand while leaning on the cane with the other) and those camisoles with the built-in bra (cause they’re comfortable and the last thing I need with everything else is some underwire cutting into me, especially now that my ribs are really prominent) and socks and slippers. Sometimes not even slippers! When I go “out” I might put on jeans and sneakers, or a pair of flats, but honestly, I just switched winter for summer clothes this weekend and realized I hadn’t worn *anything* nice since January.

7. See #1

I'm tired

2006-05-28T15:49:00.000-05:00

I've put off writing anything as I don't have a whole lot to say that I haven't already said, probably more than once. Pain, stiffness, can't walk, blah, blah, blah.

What I do have to report is not all that exciting. Tyler spoke to Theresa, the NP at Balderston's office this week; they are expecting FDA approval sometime in June, and rough guesstimate for my surgery, August or September. Of course, I am grateful and thankful that there is surgery to help me, and thankful that I can have it so soon (three more months! ack!) but being cooped up and unable to do lots of really simple things is starting to weigh on me.

I'm tired of not being able to walk. One of my "well-meaning" neighbors told me the other day that when I walked with my cane I resembled the R. Crumb "Keep on Truckin'" character (he was referring, I'm guessing, to the two panes at the bottom of that page in the link, as they are bent over forward), which, unfortunately, is pretty spot on. It's not just how I know I look when I walk with the cane, it's that walking even a few steps just wrings me out! I have to stop every few steps, panting with exhaustion. On the upside, I guess that my stomach muscles are going to be very strong, cause they're all that is holding me even semi-upright at this point.

I'm tired of not being able to stand up for more than a few seconds at a time without a)crumpling forward and
b)panting with exhaustion.
If I want to wash my face, I have to get into the shower, as I can't cup both my hands to fill them with water and rinse, I need to hold myself up with one hand on the sink.

I'm tired of not being able to spend as much time cooking as I'd like because I can't freakin' stand up. While it is true that the kitchen is one of the easier rooms for me (galley kitchen, always something to hold on to), doing anything like chopping, slicing, opening cans or, basically, anything that requires two hands, is very hard and leaves me, you guessed it, panting with exhaustion. (I wonder if my stooped-ness is cramping my lungs and affecting my lung capacity? A scary thought, since that was happening before I had the surgery for the scoliosis 20 years ago.)

Here's something else good: I'm still not tired of NYPD Blue! Hey, I've gotta find something positive to focus on ...

Dental Adventures

2006-05-18T17:08:00.000-05:00

I went to the dentist on Tuesday. I honestly don't know which was worse, having my teeth scraped painfully and mercilessly by my dentist (during the time I spent in the hospital and flat on my back for weeks on end, flossing wasn't exactly a high priority, I'm lucky I was able to get up to brush once a day. Gross, I know.) or the cab rides there and back. I spent most of the time in the ride uptown hoisting myself up off the seat with one hand while bracing against the door handle with the other to prevent jostling and the pain that comes with it. Getting into the cab was no bargain either; when I finally got myself in and was sitting upright, I couldn't move to close the door. I had to yell at a lady on the corner and ask her to slam it for me. She had been trying to hail her own cab and actually tried to take the one I was in till the cab driver saw that I had a cane and jolted past her to me. ha!

I expected the dentist's chair to be more of a torture device than usual, but was pleasantly surprised at how comfortable I was. The only dicey part (apart from having my teeth scraped painfully and mercilessly, I know I already said that but it bears repeating, painful merciless scraping I tell you!) was when I had to sit up to rinse and spit. Dr. Goldstein helped me out by elevating the chair and slowly tipping me up to a semi-sitting postion, then handing me the cup of water. When I was done swishing, I had to aim and really spurt all the blood and mouthwash and water out, as I was still about six to eight inches from the basin. I didn't get ANY on me; by the end of the cleaning, I was really looking forward to the spitting.

I feel so much better now that my teeth are clean and white. The next thing on my list is a haircut, but I'm going to have to wait for the tonsorial adventure till I recover from this week's cab rides. And here's something I never thought I'd say, despite the (here it comes, get ready) merciless scraping, I'm quite sure that the experience at the hair salon, what with the shampooing and sitting upright for close to an hour, will be much worse than the dentist's.

It's the darnedest thing ...

2006-05-13T14:22:00.000-05:00

Most of the intense pain that I was having over the last few weeks has subsided, at least for now, but I'm having much more trouble walking and moving. How weird is that? I'm not sure how or why this should be so; it could be the Neurontin that I am taking for sleep has kicked in as its off label use against chronic pain. It could also be that the pain has just decided to go away for a while, except to make cameo appearances when I move or try to stand or cough or breathe. Either way, I'm happy to have a break from the more intense pain, happy to give my poor beleaguered liver a respite from the constant onslaught of chemicals in the form of Tramodol and Tylenol.

Here's something else, it is getting harder and harder for me to hold myself even semi-upright without something to lean on. It takes all my energy to do so when walking, and then I have to stop every few steps to breathe, and usually have to keep my hands gripping my thighs to keep from crumpling in half.

As you know, I recently got a cane. Once I got over the shame of using it, I found it helps me to get around a bit better; I can actually walk over to the gym and use the recumbent stationary bike that Dr. Balderston recommended, though I must be a sight to behold: it takes me a full twenty minutes to walk from our apartment door just shy of 10th Avenue on 24th Street to the NYSC at 8th Avenue and 24th. I take a few steps, then stop and lean on the cane with both hands, panting. I can't even think about how long it is going to take me to get there and the possibility of painful spasms if I step wrong on the way, or I'd never go; I numbly put on socks, gym pants, sneakers, t-shirt, and go.

Then there's the maneuvering I have to do to actually get on to the bike once I'm there. This action, along with any other movement, like going from a standing to a sitting position or vice versa, makes me look, I'm sure, like one of the heroin addicts you see in the park or on the subway, all their concentration devoted to making one small movement, like lifting a hand to scratch a nose, performed in the most careful and deliberate slow motion.

I've been forced to decelerate everything. If I am twenty feet from the corner and see the light is about to change, I can't run to catch it; I must be satisfied to get to the corner, and, resting on my cane, watch the cars and trucks go whizzing by as I wait for the light so I can shuffle across the street, hopefully making it to the other side before it changes again. I stopped to rest yesterday by the park on 24th, just behind the Clearview cinema and was able to see a robin yank a worm, still wriggling, from the ground. A few paces down I watched as two squirrels chased each other, oblivious to me, around and around a tree trunk and then off into the bushes.

I've never been an especially patient person, in fact I'm pretty much very IMpatient most of the time. Now it takes me twenty minutes to walk a distance that used to take six, but somehow I'm ok with that. I'm more tolerant. It's the darnedest thing.

Pimp my cane!

2006-05-09T15:41:00.000-05:00

Pimp my cane!
Originally uploaded by _Ingrid_.

I finally broke down and sent Tyler out this weekend to get me a cane. He came back with this sleek black "quad" style (so called because of the four feet at the bottom). It doesn't help so much with walking as it gives me something to lean on when I have to stop every few steps to rest.

Here's the part where you come in ... Get busy all you creative and crafty cats and kittens! Any kind of stickers or labels (like file folder or address labels) stick to it (no post-its please, they fall right off!), it is about 2" in diameter so things could be tied around it, and the little ledge at the bottom could fit a tiny mascot or two. So tiny printed photos, notes, graffiti-like tags, anything like that would work on it. Think of it as kind of like signing someone's cast in the digital age and it's not a cast it's a cane.

If you are interested in pimping my cane, please email or flickr mail me for my mailing address, or you can email a file to me to be printed on an address label.

Yo! Pimp my cane!

2006-05-07T14:01:00.000-05:00

My appointment with the people at SSDI is on May 15th. I thought I might trawl around some of the sites where folks with back pain gather to see if I could get any tips about the SSDI process. I ended up getting really annoyed at some of the postings here from people who are suffering from various ailments that are causing back pain. While a few of them make me thankful that I'm not as bad off as they are (people with morphine pumps and implants to block nerve impulses who can't have any more surgeries because of built up scar tissue, people with previously misdiagnosed conditions or botched procedures), I honestly want to *shake* some of these other posters! One woman was ranting on (in all caps, no less) about how she couldn't walk for more than 30 minutes at a time without pain. A man was lamenting that his recurring pain would take "a few days" to subside. Another man was complaining of pain that had forced him to curtail his daily walk to 2 miles.

WTF?!

I can't walk to the bathroom or kitchen anymore without wrenching pain and leg weakness, and my feet feel like they're falling asleep all the time. I have to lean on Tyler or pieces of furniture as I go. Sometimes I don't leave the house, not even to stoop sit with Tony, for days at a time. Walk for 30 minutes? I'd sell my soul at this point to walk for 30 minutes without pain or to have this whole mess subside in a few days.

Perhaps we back pain sufferers should stick together; perhaps we should have our own version of the Blue Wall of Silence, where any back pain is *all* back pain and no one who has it doubts anyone else who says they have it. If one of us has it, we all have it; that sort of thing.

I think maybe I've been watching too much NYPD Blue ...

I'm too thin!

2006-05-04T15:28:00.000-05:00

I guess it is not possible to be "too rich" but I am definitely too thin right now.

As I said here, Dr. Balderston wanted me to gain some weight, but without any kind of exercise in the picture it's hard. I don't want to gain fat, and that's what will happen if I just start loading up on cake, chips, ice cream, etc.

Anyone have any tips on putting on muscle without really working out? I do have some tiny hand weights for my arms and upper body, and have been doing isometrics for my legs and butt (pillow between the knees, squeeze it while squeezing butt at the same time, hold for about two minutes, do about 10 to 15 of these a day) but other than that, I am forced to be pretty sedentary. Add the pain and inability to sit for longer than 3 seconds to the system numbing effects of the pain medication and my appetite is nil. I'm having one protein shake a day, and I will probably up that to two a day if I can't find another way to get some good calories in me. I dread having to face surgery, even if it is months away, being so underweight.

2006-05-03T17:40:00.000-05:00

OK, on today's rerun of NYPD Blue, there was a character who stabbed himself and said it was a robbery so he could get disability cause he had Degenerative Disc Disease in his spine and his insurance didn't cover it! This marks the first time I've heard what I have referenced on TV. You would think, since it is so common (SSDI says it is the one impairment they see listed on the disability forms more than any other)that you'd hear more about it, maybe more famous people that have it, etc. That is part of the reason I started this blog, cause I feel alone in having it, and when I tell people what it is, no one seems to have heard it.

SSDI

2006-05-01T15:37:00.000-05:00

Getting ready to apply for disability (SSDI) and not very optimistic about the outcome. I've found a blogger who used to work for SSDI and doesn't paint a sympathetic picture for sufferers of Degenerative Disc Disease who apply. This pisses me off, though it is typical of the government and the medical community in general to be dismissive of the nebulous world of "back pain." The problem is, it is fairly easy, I'm guessing, to fake. So now thanks to all the fakers out there, I can't (well, I'm getting ahead of myself and predicting here, I haven't even applied yet; but from what I've read and people tell me, it is next to impossible to get SSDI for back pain) get any benefits that are due to me even though I am genuinely unable to function in any meaningful way anymore.