It's been a while.

Well, I know that it's been a while since I have been on here. Of course I have no idea who reads this or if it even makes a difference, but it helps me. I've been pretty much the same since the last post with the same issues. The only thing that has changed is that today is 4 weeks since my last seizure and my legs no longer ache on the inside, like the restless leg feeling.

The doctor has started me on the Butrans 20 mcg/hr patch a few weeks ago and the only change I have noticed from it is the leg thing. I still get the pain, numbness/tingling, etc. The worst part of starting the patch was two days later, I was couch bound for two days. I had a severe migraine to where I almost couldn't move and was vomiting, even with the nausea medicine. I don't know for sure that it was the patch or I got my first extremely severe Chiari headache. I am still going to give it more time to see if I get more relief.

I have been more active with Pain Management. They agreed with the medicines that I am on for now and on Monday, December 3rd, I received my first facet joint injections in my neck. It wasn't anything like I had expected. I expected tons of pain and to be completely out of it from the sedation that I opted for. The worst part of the whole procedure was the numbing shots. They weren't even that bad. The only issues I had with the sedation was for the first few minutes I was a little wobbly. The numbness for a few hours was nice, but once it wore off, I was barely in a little more pain than normal, so I used some ice, took my medicine, and went to bed. I haven't noticed anything yet but just like the pain patch, I am going to wait and give it time. It says that it can take up to two weeks to take full effect. I hope that this is something that works for me. I am so tired of nothing making much of a difference. I don't understand why nothing is bringing me below a 7.  I am still, most days, at a 7 or 8 on the pain scale. I go back in a month, due to the holidays, for a follow-up. I guess they will decide from there, if there isn't a change by then, what to do next. The PA that I see there is awesome and told me not to worry because there are plenty of treatments they can try. I will keep my fingers crossed.

I have probably already said this in the past, but this is all so exhausting. I am tired all the time. The new issue is that I sleep for an hour, maybe two, and then have to get up and move around a little because I hurt and am so uncomfortable. I go back to bed and it happens again a couple hours later. Some days I decide to just stay up. For about the past month, I have only slept one night, all the way though. Then between, trying to keep up with my son, husband, the house, and life, it wears me out even more.

The last month or two has been really difficult for me. I really think that the whole lifelong illness thing has finally hit me. Anymore it's not so much. "Why me?", but more, "How can we get me as comfortable as possible.". I try to wait until my good days to take care of the house but sometimes I can't stand it that I work on my bad days too. Nothing too big but I am so OCD that even though my house is already clean, I feel as if it is a disaster area. My house for me is the only thing I feel I have control over. I can't control my Chiari, Syringomyelia, symptoms of Fibromyalgia, pinched nerves, etc. I have also had a hard time with personal stuff lately and it's not helping one bit. Between the health issues and life in general, it has gotten me to the point, at this time, that I don't even really want to leave the house. It has all left me with some depression issues, which I have had for years but got under control without meds for almost 6 years now. I have few people I can talk to about a lot of it because they either just don't understand or I don't want everyone knowing my personal business. It makes you feel so alone.

Now that I have vented and have been depressing, I will say good bye until next time. I go back to Neuro next week, and we will just have to wait and see what he has to say. I feel like with all these doctors, they just don't have a clue what to do with me anymore. At least to the doctors I am seeing now, I am no longer a junkie. In case I'm not on again for a while, I hope whoever is reading this has a very Merry Christmas and a Happy, pain free, New Year!