just getting worse and worse

I'm always torn.

I want this blog to be truthful and even sometimes painfully honest. Yet, I know I have close friends and family reading this and I don't want them to worry or feeling badly for me.

I'm just getting worse. I don't even know where to start.

Last week, I went to PT. The therapist is wonderful, these people are so honoring and they listen so well. I feel it's good for me to go there so at least someone is monitoring how I am doing.

You wouldn't believe how low key the exercises are. Shoulder shrugs, rolling the shoulders, pulling the easiest strength rubber band back to my chest and midsection. Last week, he had me lie down on a padded table and carefully bring one leg, bended, up and then sort of reach my hand carefully to the knee and then back down with the leg. It seemed so easy and I could see how it would help with core strengthening.

I used to LOVE exercises. I did them...well...religiously. I bought a home gym and worked out on that even though my job as a ranch worker and horse trainer was very physical. Most nights, I got on the floor during TV commercials and did ab exercises.

While the therapist worked with someone else for a minute, I did about ten of those "touch the knees" reps. and oh, how I have paid since then! My legs have been even more painful than ever and my hips while in bed are extremely painful, enough to wake me up. And my neck, back of head is worse. Even though there is absolutely no lifting of the head in these exercises, no real reaching, just lifting of the arm to touch the bended knee...but I guess the action of the arm-lifting is what is wrong. I don't know.

I'm also much worse on the back of my head in terms of painful pins and needles sensation on the crown and suboccipitally, and also down the back. This went away for a little bit, but now is back worse than it's been in years.

Another thing that has returned that has been gone for at least two years is painful itching and burning and lancinating pains in my arms. I used to have this so badly that I would lie on the bed and pray I could cut my arms off. I used to ice them and take Benadryl Severe Allergy and Sinus Headache medicine, which would help. It was a really bad symptom. Now, it's not that bad yet, but it HAS returned.

I am taking a lot more pain medication. The Norco or Percocet doesn't seem to work after 2.5 hours, so I alternate them. That helps. But I am still such a mess that I can't even lie on the bed and read anymore. I have loved reading so much, it's been something that has transported me, something I've really needed.

It's been a very long time since I've had the strength to walk the little traipse up to the hammock. I am thinking of asking my husband to take the hammock down, it just reminds me I can't get up there to use it, to see it sadly, limply hanging there. He was right, I should get one in a frame and put it on the patio behind the house. I think I would it use it then.

But to lie in bed hurts, my legs just fire up terribly. Enough that I just can't read.

I am wanting to cancel my California trip to see the "Agreed upon Medical Examiners" for work comp. Of course, I never wanted to go, but I was told it was necessary so there would be no "interruption" in my benefits. I don't know...I wish they'd send those doctors to me!

So, this naturally leads me to thinking about the extraction fusion that I'm supposed to have at The Chiari Institute in NY. My situation is that I don't know anyone who has had what I've had. At least, not and survived. Now, I'm sure they are out there, but I haven't found any. I started a message board for those with Jefferson Fractures, and no one has come forth. And it's not just the JF, but the "atlanto occipital dislocation" (skull came loose from spine) as well.

So, I don't have a single person to discuss how they feel, how they progress, if they've had surgery and the results, all of that. I'm sort of a loner out here and I can't say, like others can, so and so had this surgery and has done well.

I "can" say that, because I know people who have had this fusion of course. But they didn't start with what I have.

Thus, deciding "for" surgery is certainly a big leap of faith. It is for everyone. But for me, it's hard to hang my hat on someone else's situation and imagine that could be my results, as well. I don't like being special.

Even with my world-renowned doctors, I'm special. As I've said, Dr. B said my situation is "off the charts unusual." It's wonderful to at least feel validated, that a surgeon can say, essentially, you have a reason to feel like you do.

But in the back of my mind, I know without a doubt that the fusion they do has never been done on someone with my set of issues. So, this all adds to my sense of doubt, as well.

Where I need to focus is on my faith, that God would not have led me, almost miraculously, to this NY doctor if that is not the path I'm supposed to take. That God will be working through this surgeon. Once I can start keeping those thoughts in my mind and words in my mouth, I think my decision will be easy.

And I can do that now that I've laid it all out on the table here.

Another thing that haunts me is the thought of the halo I have to wear 4 months (or maybe more) post op. I get claustrophobic and anxious in the CTO vest sometimes and rip it off. There would be no such option in the halo. I know I'm focusing on the negatives here. Perhaps the feeling of stability and relief of symptoms would be so heavenly with the halo and fusion that I would welcome it all. THAT is what I need to focus on, and I will be trying.

And dear friend, please do not worry about me. Tomorrow is another day, tomorrow will be great, and if not, the next day will.