Shingles Update- July 16, 2011

Wow, what a difference a month makes! Last month at this time I honestly thought I would never teach again, I would never walk normally again, or that I would have a "normal" life ever again. Thirty little days later I see hope in all of the above. Not only do I see hope, but I see progress.

I am so glad I listened to my mind, heart, and body and started to make a fuss about the Lyrica not being the right medicine for me. Of course, it had to start showing me physical affects I could prove to the doctors first, but I got there eventually. A good doctor would have listened to me the first time I expressed concern about a very dangerous drug he had prescribed. We won't go there yet, though. I'm not ready to express my anger and frustration in that area. First I have to figure out what long term effects this will have on my life. When I'm able to process all of that, I will most likely be sitting down with an attorney to see if I have a malpractice case. I don't know, though... that might just be anger talking. We'll see.

As most of you know, I saw the new neurologist just a day after my family doctor agreed to start weaning me off the Lyrica because of the side effects. The new neurologist ROCKS! She actually did a lot of talking with me, examined my feet (which is something the old neurologist never did), and came up with a plan. She spent about 45 minutes with me, which is amazing as far as doctor's visits go anymore. I'm used to 15 minutes being the maximum amount of time I have, and the doctors are usually rushing out of the room while I'm still trying to form my questions.

I was weaned off the Lyrica, and the side effects started to disappear within days. My vision is back, almost 100%. My eyes still get VERY tired, and I think I will need to see an eye doctor again, just to check and see if I need a new prescription for glasses. I know those kinds of things can change after a serious illness. My feet are functional, though they still have a bit to go in terms of healing. It turns out I had plantar fasciitis, which is an overuse injury in most cases. My headaches are mostly gone, though the neurologist thinks I may have reoccurring migraines that I'll have to deal with. So far I've only had one of those since going off the Lyrica. I can handle one serious headache a month. Heck, I lived through a continuous headache for more than 30 straight days, then a daily headache for another 30. I can handle a couple of hours. Amazingly, as bad as that one migraine was, a prescription strength ibuprophin did the trick. Not too bad after all I've been through.

Here's what the doctor thinks happened. I was exercising hard right before the shingles hit. Some of my best running times were the week before I got the supposed costochondritis. More than likely I was already developing a case of plantar fasciitis before I got sick. I have always had some neck, back, and shoulder pain since the car accidents I was in when I was 16 and 17-years-old. I have learned to live with that and work with it. And, we know I've been having some inflammation issues since about November of last year. So, putting that all together, when the shingles hit my body reacted by swelling up some more. It got tight, then it got tighter. The Lyrica was actually causing my body to get even MORE tight, causing more pain and more trouble. My feet did not have any nerve damage at all. I never needed the Lyrica! The medication itself was making my feet become less and less useful as the pain of the swelling was becoming unbearable. Argh!

My headaches were caused by the same concept. My muscles were already tight and sore. The Lyrica was causing even more tightening, giving me tension headaches that were some of the worse pain I've ever experienced. I've handled a lot, too. I'm no stranger to headaches, as my series on Physical Limitations from last year points out. Thank goodness that is all over.

So, the big issue now is to get loosened up and on my way to a normal life. I have an appointment for a massage this morning (it's less than the cost of an appointment with my chiropractor and more beneficial for what I need right now). It's kind of exciting that my therapy includes something that most people feel is a luxury. We have a massage school right down the road from us, so I'll be going there and getting an hour treatment for only $25. Can't beat that!

There are a few issues that still need to be addressed. The new neurologist seems to think my juvenile epilepsy may have returned. She is calling the shaking and confusion that was happening in the days before I was hospitalized seizures. I had an EEG test done last week. When I called for the results on Wednesday I was told the doctor wants to talk to me about that during my follow up appointment on August 1st. I supposed that means they found something of some concern since the doctor had previously called me with clear test results. I'm okay with this news, though, and I am prepared for it. Dr. Patterson had told me that if we found I am having seizures again that there is plenty of medication I can take that will control them and will allow me to drive and live normally- unlike the Lyrica experience I had. I have been asked not to drive until we have that talk, though. I can't wait until I can feel independent again. For now, Daniel is still driving me around everywhere I need to go.

I also need to ask Dr. Patterson about my latest sleeping problem. I've never really gotten good sleep as an adult, but ever since going off the Lyrica my sleeping is TERRIBLE! I only sleep for two to three hours at a time. I get up, go to the bathroom, get a drink of water, and lay back down. It takes a good 20-30 minutes to fall asleep again. In another two or three hours the cycle starts all over. I've tried to force myself not to get up, but that doesn't work. Then I don't fall back to sleep at all. Last night I got up at 2 AM and finally gave up, watching TV until about 4:30. I was finally able to go back to sleep, but when Daniel's alarm went off at 5:30 I was up for the day. I'm exhausted, but trying to take a nap during the day doesn't work. I simply won't fall asleep. Ironically, the ONE good thing about they Lyrica was that I actually slept through the night for the first time in years. I have never been THIS bad about sleeping, though.

Finally, I still need to have the CT scan done on my liver. They had found a spot in the original CT scan done in the ER on March 23, when this all began. Just to be on the safe side, they are going to make sure it is just a bruise like they suspect. If the spot has grown, though, we will be looking at a whole different issue. I've tried to put that out of my mind all this time, but eventually I have to face it and schedule that test. I think we need to save the money for it, though. We are pretty much drained financially. The test will be about $400.

Finally, I've had some swelling issues since November, and I keep getting a terrible rash that the dermatologist thinks is eczema. It comes and goes, and the rash is definitely worse when my body is swollen the most. I've been tested for Lupus more than once, but the results are negative each time.

The issues left to handle are actually relatively small compared to where I was a couple of months ago. A year ago I would have been freaking out about the spot on my liver and the possible epilepsy. Honestly, these seem small now- something to deal with but not to really cause worry. It's amazing how perspective changes after seeing a more serious illness. Whatever there is now is manageable. Just knowing my body functions correctly is enough for now.

So, I'm back to applying for jobs. I may have missed my window of opportunity for this school year, and that is something that is seriously bringing me down. I had an interview on Monday, but I apparently didn't get that job, as they said they would be making their choice by the end of the week. I didn't get a call back, though, and the job is was posted again on Craig's List at noon on Friday. That's okay, that school is missing out on a great teacher!

That's about all as an update for now. I hope things continue to progress positively this month. By this time next month I will have seen the neurologist and hopefully be driving again. School will have started for the girls, and if I don't have a teaching job I'm not really sure what I'll do with myself. I guess we'll cross that bridge when we get there.