Out and About...just barely

Well I forced to spend several hours out of the house on Friday in order to have x-rays taken for my upcoming post-op appointment on Tuesday. I was shocked out how long it took. Normally when I have gone to the hospital for such x-rays, I'm out in about half an hour. But of course, the time when I am in the most pain I am forced to sit around for 2 hours. I was begging them for a place to lie down and the tears weren't helping my cause. At least one gentleman there offered me some cold water which helped the dizziness I was feeling. When we finally received the x-rays from radiology, we showed the gentleman and the other person he was working with, the x-rays so that they could understand better why I was in so much pain and having trouble sitting for so long.

Having the x-rays taken was amusing as well. When setting up the focus on my spine for the x-ray, the technician asked me how severe my scoliosis was. I told him its not severe anymore. When he came back with the x-ray he was in awe and shock. Apparently they aren't used to seeing x-rays such as mine. Well, that is part of the reason I choose the surgeon I did...his technique is more radical in that he manipulates every vertebrate, but in doing so there is less over all trauma to the body as no ribs need to be removed.

A quick glance of the new x-rays look okay...seems no screws have popped out of place, but we'll see what the orthopedic surgeon here has to say on Tuesday. Then he will ship off his notes and the x-rays to Dr. Lenke in St. Louis and we'll learn what he says.

I went out again yesterday. This time to Costco. I only made it halfway through the warehouse. The couches looked too inviting for my tired body. So I stayed there until we were ready to leave. On a positive note though we found a lovely red leather computer bag on wheels...something I know I will need once I return, and I did want one with some classy character (the lovely red leather) rather than a standard black cloth bag.

I still can't imagine being able to stay out for 9+ hours for a work day but that is a ways off. Mom seems really impressed with my improvements that occurred just in the 3 weeks she was away. I still think I have a long slow road ahead of me, and again I appreciate all the support everyone is giving me, even just by reading my blog.

A X-Ray is Worth a Thousand Words

Here are the before and after X-rays. Notice the curves in the before photos and the hardware and straightness in the after....ouch!

Sitting vs. Standing vs. Walking vs. Whatever

I thought I might try to explain my limitations a little bit better.

Lying down is great. It relieves the pressure off my lower back. This pressure we believe is caused by a multitude of factors: 3 pounds of hardware in my back, chopped up muscles that are trying to regain strength, and an overall change is my internal anatomy from the straightening of my back. The skin on my back is still extremely sensitive so it does hurt to lie down but at least my head doesn't feel like its going to fall off.

Sitting is more tricky. I can lean back okay, like in a car seat slightly reclined. And because of my skin sensitivity, I have to have a feather pillow between me and the seat. Again, in this situation, the seat back and head rest are holding me up. Sitting up at a 90 degree angle to eat or talk to someone without looking like a slouch is when the pain sets in faster. Again, its probably due to the additional weight I'm not carrying in my upper back and my hurt muscles. I can only handle sitting like this for about 10 minutes and only on a chair with a cushioned bottom. In the mornings I can last a bit longer than 10 minutes but as the day wears on it gets harder. Eating dinner requires amazing effort and hurts like you wouldn't imagine.

The situation is similar with standing since I'm holding myself up on my own. I start to get really wobbly after a while. Even just standing to brush my teeth or shower is exhausting. If I've been walking for a while I eventually have to slow down and grab on to someone.

In my previous post I wrote that I went to the Citadel, which was a combo of sitting, standing, and walking, and by the end I was pretty wobbly (just ask Joe who I saw there) and needed to grab on to an arm to walk out. The car ride after was a relief since the car seat supported me, and gave my body a good rest. At the grocery store I took my walker in. I was tired and couldn't walk by myself, but with the walker I could put my weight on it and scoot around. I didn't last long there but at least I was pushing my limitations.

Finally Another Update

After dealing with headaches close to migraines and nausia, I'm finally able to function again and do things such as update this blog. We think it was the new meds (the mild narcotic) that the docs moved me to that was causing the headaches. After cutting down on those and incorporating more Tylenol into the routine, I seem to be doing better. I still feel sick in the morning, but there seems to be nothing to remedy that situation.

I still can't sit up for more than about 1o minutes (sometimes I can go a little longer depending on the chair) and my back and particularly my shoulder blade area is in a lot of pain still. Every day I try to walk a mile, though not all at once. It's been cold out but thankfully we purchased a treadmill on really good sale last year in anticipation of my recovery. I also try to stretch often since my left arm had lost a lot of its mobility (just need to strengthen those muscles as they recover from whatever trauma they were put through). My arm is getting better as far as reaching up, now I have to practice going backwards...not sure how to do that though.

Yesterday was also a milestone in that I went out into the real world for over an hour. Jonathan drove me downtown to the Citadel so I could speak a certain professor regarding his upcoming class, and then we went to the grocery store for a quick trip. I was excited cuz I finally got to use my handicap tag at the Citadel but, sheesh, it was more of a hike from there than from the regular parking lot. The Citadel doors are so heavy though so I need to enter through the handicap alley just for the automatic door openers. The Citadel tired me out so at the grocery store I used my walker. I feel like such an old lady when I use it but it gives me something to lean on and it keeps people from bumping into me. We used my car yesterday rather than Jonathan's CR-V, and I find it much easier to get into (might have something to do with the leather seats), getting out takes a few minutes but with more practice we'll get it figured out soon enough.

Jonathan's mom leaves today. She has been a huge help for us both. I can't believe that the hospital pamphlets suggest having something with you for 1-2 weeks after surgery. There is no way I could have made it alone after 2 weeks. Everything tires me out and then when I was having those horrible headaches and sickness I couldn't do anything! My mother will be returning late Thursday and staying for a week in order to help me make the house "Jennifer" accessible. After that, I'm on my own.

My 6-week anniversary (can you call it that?) is coming up in a few days. That is supposed to be some sort of landmark but I can't remember why. Maybe because it's the first post-op doctor visit? Maybe I'll learn then.

Incision

Here is my incision at week 2 before the steri-strips were removed (picture on the right). The strips were put on to get the final closure of the incision over the subcutaneous stitches that will eventually dissolve. Two weeks after surgery I was able to start taking showers and some of the strips started to loosen. After a week of showering only one strip had come off so my husband and I started to remove them a few at a time. Eventually we found that the best method was soaking a few strips in vegetable oil and then removing the strips by holding the skin tight with a Q-tip and gently pulling off the strip while adding some more oil as it was removed.

The incision after all of the strips have been removed at about week 3 after the surgery is pictured on the right.

Happy Valentine's Day!

So yesterday I felt as if my entire back from neck to lower and my left chest were on fire. Almost like a horrible sunburn. Extremely painful if all you are able to do is lie on your back. Feeling a bit better today.

Back is still stiff and I apparently still have issues to work out with my Short Term Disability. Looks like they have me going back to work 2 weeks earlier than the doctor ordered, and at this point in time I believe I will be needing those 2 weeks.

Who's Out There?

Just curious who is out there reading this blog. Feel free to leave a comment to say hi! I don't think you need to register to do so.

Thankful for the Pain

I've been watching/reading a scoliosis forum for the past year. It was/is a great reference source for me. I read about people's experiences with either upcoming surgeries or the post-op experiences. Most individuals were always scared about the surgery but knew it would make their life better. And those going through the post-op were miserable but getting better day by day and never regretted their decisions.

Today I hopped on the site again just to check it out. However miserable i have been feeling lately, I was reminded again of just how lucky I am to be experiencing this pain. As it turns out, one of the scoliosis forum contributors was scheduled for surgery in Texas on Feb. 8. She was 30, married with 3 children. Unfortunately something went horribly wrong during the surgery and she passed away. I can't imagine what her family is going through right now.

All of us know the risks when we go in, but we cross our fingers and hope/pray that we don't become one of the statistics. My heart goes out to this young woman's family.

Where's the Light at the End of the Tunnel?

Lately I've been pretty down about the whole experience. I'm tired, I hurt, and I'm tired of hurting. I can't do much for myself and that is frustrating. Today I tried to put my drink back down on the coffee table and I missed, which sent it tumbling onto the living room carpet. But all I could do was watch the soda spill out onto the floor. I couldn't bend down to pick it up, all I could do was cry about my spilt "soda".

I'm not sure how to get better either. Every day I'm one day closer to starting up work again, but I can't sit down for very long without massive pain. That scares me. Yes I realize I'm not starting up work til the end of March but what if? What if I'm not better by then? I don't feel like I'm getting better, only worse. And I'm not sure how to help that? Do I practice by sitting up more? I thought I wasn't supposed to do that. I'm trying to walk and move around. Even my arms have issues. I can raise my right arm like normal, but left arm can only go so far. I work on stretching it out every day but, again, I'm not see much progress.

So basically I'm frustrated and afraid I'll never get better. Where is that light at the end of the tunnel??????

Progress

Jennifer went on an outing today to Tuesday Morning. She took her walker again and it seems to help when she starts to get tired in the story and does not have a place to immediately sit down. She walked around for about 15 minutes and then went back to the car to sit while I paid for our finds.

Her back was quite stiff last night and we are not sure if it is because she is off a regularly scheduled muscle relaxant or because she did too much dealing with bills and insurance. She has had a few stressful days due to some problems with her short term disability and insurance issues with a doctor that she saw back in November about her heart issues.

She has some pain every once in awhile but is also having new sensations, could be from muscles healing and "waking back up." There are still some spots on her back and on her chest that are numb and sore.

Frightening Moments

Yesterday we had probably one of the scariest moments since we have been back home in Charleston. Jennifer was taking her shower and started to feel quite nauseous and wanted to sit down. Before I knew it she was not responding and her jaw was clamped shut. She had passed out and I had to lift her out of the shower as she was turning blue and lay her down on the floor. I was able to clear her airway and thankfully she started to breath again and regained consciousness.

After a few minutes she was able to stand again and get back into bed to lie down.

I called her local doctor, speaking with the nurse, and also called the office in St. Louis. The consensus was that because she was stable the issue had probably resolved itself but if the problem occurred again or if she had any heart palpitations that she needed to be transported to the ER. Amy in St. Louis said that fainting in the shower was not all that uncommon due to the hot environment and the standing.

Jennifer had not yet had breakfast that morning which probably contributed to the drop in blood pressure that standing and a hot environment would cause.

Advise for the future. She needs to eat in the morning and whenever taking pain pills. Shower with the door open and never alone, at least for a few more weeks. Take warm showers, not hot showers. Take showers later in the day after the body has had a chance to wake up.

Jonathan

Check this out

If you want to see the type of surgery I went through, though a bit more extreme, set your DVRs to tape Discovery Channel Feb 4 at 5pm "Surgery Saved My Life: Extreme Spine Surgery"

http://dsc.discovery.com/fansites/surgery/episode/episode.html

This surgery is performed by another well known scoliosis surgeron. He is NY city based doctor to whom a lot of East coasters go to with excellent results. We attempted to get an appointment with him but were not able to get one that worked with our schedule.

We finally have Internet access!

Hence the reason for the lack of posting. That and the fact that I've been wanting to do the actual posting for some time. I think you would get more information out of Jonathan, as I will tire very quickly, but tough luck. I hope my recovery has been going well. It's hard to tell as I have no comparison, but I at least don't think its been negative. I've had a couple of very difficult nights/afternoons, but I imagine that's normal, and they did follow some outings - I joined my family for breakfast downtown and on another day I went to Walmart with Jonathan to get a wireless router...so I could blog! I learned a valuable lesson that trip too...take your walker. I brought mine and it kept the chaotic Walmart crowds from bumping into me and even got some of them out of my way. Turned out I needed it anyway towards the end of our 15 minute journey just from shear exhaustion.

Otherwise things seem to be good. It was great having my whole family here and I was sad when some of them had to leave. Mom stayed on and has been a Godsend. If not for her, all I'd be eating is gummy bears from off the floor as I am sure that's where I would have ended up. Mom leaves tomorrow and I'm not looking forward to it, but maybe it will be good for me since I will have to start relying on myself more.

I still cannot sit up for long periods and am usually found lying down on my couch or on our borrowed recliner. I don't mind too much...my view is good from both spots. I can see outside, I can see the TV, and most importantly I can see all of the "Get Well" and "Thinking of You" cards I have received. They help keep me strong in my worst of moments so thank you to all of you.

I'm tiring out now. These muscles aren't used to being used. Hopefully you'll hear from one of us sooner rather than later.

Jennifer