Scoliosis: Life, Support & Friends

Is it ever appropriate for a stranger to ask you what's wrong with you? I went to the bank in some pain today, and I was limping. The teller asked me if I'd had foot surgery, and I ignored her. Then she said she had foot surgery last year, and I figured I'd better answer her so I wouldn't seem rude. I just said, "I need back surgery." Short, simple truth. Maybe I should've just said, "I had back surgery," as that would have been the truth, too. As I left, she told me to take care of myself, and I could tell she was sincere, and not trying to be rude, at least not deliberately. But I just find it really irritating to be asked personal questions by total strangers. The employees there may consider it making conversation and good customer service, but I think it's nosy and rude. But maybe I was just being a bitch because I was in pain? Feedback, please. What would you do? Ignore, lie, or tell the truth?

Hey, fellow ScoNuts. Sorry for my lack of posts, but minus the surgery, there's nothing very interesting about my day-to-day life. At least, nothing none of you aren't already painfully familiar with. I moved in with my boyfriend, and he's being wonderful to me. He does everything for me, despite my protests; consequently, I have become even more sedentary (I didn't realize that was possible), so my pain has skyrocketed. I know I'm gaining weight, too. I still don't have insurance, but I have the option to buy a policy from the company that used to insure me. Of course, who's going to insure me with a spine like mine? At best, it'll be labeled a preexisting condition and excluded completely. So I have to apply and be approved for disability before I can go back to St. Louis, and God only knows how many years that will take. Dr. Bones wanted me to wait ten more years, and now it looks like I might have to. :( I've got some tips about good disabi...

Well, my fame as a blogger seems to be short-lived. Unfortunately I've lost my health insurance, and I won't be having surgery after all. I found out about two weeks ago, but it's been hard to organize my thoughts since then. At first I was extremely relieved, which really surprised me. I hadn't realized I was that scared. Now I'm just crushed. I'm really depressed about it. I had a muscle spasm an hour ago, and it lasted over 15 minutes. I can finally move again, but it's still hurting. Oh, well. Dr. Bones wanted me to wait ten years anyway. Hopefully Dr. STL will still be practicing in ten years.

I'm still counting down - 75 days left. Things to look forward to after surgery, other than pain relief: 1. Having a bra that fits properly. 2. Wearing any pair of shoes I want, without having to get an expensive lift put on. 3. Not having my legs fall asleep all the time (hopefully). 4. Sleeping better! 5. No more limping! 6. No backaches from doing the laundry or dishes, showering, or anything else that requires standing for long periods. 7. Better posture. Things to dread: 1. The insane medical bills. 2. Changes in my ability to bathe, dress, and move. Other than the money ($50,000 and up), everything else I can deal with. At least, I think so. I'm currently fused from T10-L3. It's going to be revised and continued, from T4-S1. Does anyone out there have a fusion this complex? I really want to know what it's like to be fused this much, so I know what to expect. Comment me here or hit me up on Twitter, @oddcupcake.

Dammit, I promised myself I wouldn't cry. Mom and I drove to Tulsa and flew to St. Louis. Completely uneventful. Up early the next morning, called the shuttle to the hospital so we wouldn't have to worry about parking and grabbed breakfast in the cafeteria. Let me tell you something. Barnes Jewish is the biggest hospital I've ever seen. No joke, the building I was in is 20 stories high and all of the buildings cover SEVEN CITY BLOCKS. This place was GINORMOUS. I got two new x-rays taken. Oh, I forgot to mention, I was in excruciating pain THE ENTIRE TRIP. So I couldn't stand up straight (especially without my shoes) during the x-rays. I didn't bother to tell the radiologists or Dr. STL, I don't really know why. I was amazed to see the x-ray up on the lightboard. My bones are so off center when I am in pain. It was a good thing I stood like that, though. None of my previous x-rays had shown that my L4 vertebra is a good 1-1.5 cm to the left of my L3 ...

The Cobra coverage was cheaper than I thought, and my mom said she'll help pay for it. We decided it's worth it to see what Dr. STL has to say, so we're flying up there on Tuesday. My appointment is Wednesday, we're flying back Thursday. If we could stay longer, we would, but it would cost extra to change our tickets. Ugh, the whole quick trip idea was so I wouldn't miss work. I wish I could see my relatives while I'm there. Anyway, I'll post when I get home, probably Friday. I really have no idea what to expect, or even what to hope for. I think I can stop praying for flexibility and symmetry. I think the most realistic thing to hope for is pain relief, and the rest is just icing. I'm pretty pissed off, actually. Why is this happening to me? My x-rays don't look so bad, compared to some others I've seen online. Why am I in so much pain? I look fine from the outside, except for my limp and rib hump. Life sucks sometimes.

Sorry I haven't posted in a while. Not much to talk about. I've been loving the Flexeril, although I've never had dry mouth this strong before. I got new electrodes for my TENS unit, but haven't had to use them yet. I've had quite a bit of free time on my hands - I lost my job. The pain seems to all but disappear when I don't have to work! I doubt I'll be able to afford Cobra coverage, but I'm gonna try my best to find the money somehow. Otherwise I have no way to take care of myself until I get a new job with insurance. The surgery is off. I found out today it's way more expensive than my mom or I had imagined. Six figures. I doubt that even includes the hospital stay, rehab, plus all the assorted "little" fees, like medication and the staff's fees - radiologists, ahoy! I have no idea what the doctor would even do, so I kinda resent the lady there telling me that. It really took the wind out of my sails. Her saying that killed the onl...

I wish there was one from the left side, then you'd see the comparison between the my back ribs on the left and the right. Oh, well. Heh. My CT scan was pretty much the same; I couldn't get it to rotate like Dr. OKC did. Picture 1 Picture 2 I haven't gone through the whole story yet. Here's the short version. My curve was found during a routine exam at school in 7th grade. I was 12, my curve was 18 degrees. Eight months later, it was 36. I had several braces, I think they were the Boston type. I chose to have surgery in July 1996 (I was 16); my curve was 48 degrees, and they fused me from T10-L3. I was in a cast for nine weeks and another brace for about six months. My curve was 20 the day after surgery. I only discovered that from my medical records. As far as I knew, it was 34. No, it increased to 34 post surgery. Before last summer, my most recent x-rays were January 1998. Last summer it was 37, but Dr. Q said to ignore that, the first radiologist mus...

I set my alarm for 7am, but we didn't get out on the road until 10:30. We planned to leave at 9, but I woke up screaming in pain, so I didn't push myself. The map from the doctor's office kinda sucked, so we missed the Kilpatrick Turnpike and got lost. We ended up near the Capital building - nowhere near the hospital - but finally made it to there in time. I had a total meltdown by the time we arrived. After four hours in the car in excruciating pain, I lost my temper and cussed out my mom and Drew. I couldn't stop crying, I was just very frustrated and anxious about the whole thing. Once I got into the exam room and gave my medical records, x-rays, CT scan (on CD), and medical history forms to the nurse, I started to calm down. I met Dr. OKC. He was awesome! He was young, up-front, honest, professional, and answered all my questions (my mom's and my boyfriend's, too). Here's what I learned: No, I was NOT finished growing when my first surgery was...

I've been thinking about how to introduce myself to you all a lot over the past few days. I suppose I'm overthinking things. I don't have to tell you all my entire life story in one post, and my current pain level doesn't allow me to type that long, anyway. Let me start off with this, then. I had spinal fusion surgery from T10 to L3 in July 1996. I only got health insurance a year ago, so I just decided last summer to get a doctor and have a checkup and a new set of x-rays. (It had been 10 years.) Long story short, I'm having another surgery next month. It's been twelve years since my first surgery, so my memories are a little fuzzy now. I was under the impression that the first surgery would cure my scoliosis, end my pain, and not limit my activities at all. I only realized the other day when reading Simone's story that this has happened to others. I'm not quite sure if my first surgeon actually told me this, or if I just assumed it and no one ever told...