Negatives Outweighing Positives

Let's start with a positive: Physical therapy is going well. Today I saw Kate, and after I wore myself out with exercises (honestly not many; I am easily worn out), she worked on my upper back and shoulder. It hurt!! I can take a lot of pain, though. It was not as bad as my MS pain. Or surgery without anesthesia. ;) After working on my rhomboids, levator, and teres for a while, she had my sit up. She asked if I still had pain, and I said yes. The amazing part... She did something about it! My previous PT experience was different. But Kate continued to work on my rhomboids and made the pain nearly go away.

Boo: I have had a migraine for five hours.

Yay: I am recovering from the steroids. Do not get me wrong; I feel awful. On a scale of 0 (great) to 10 (awful), today was a 9, down from 10s last week. But I did not feel an awfulness of 9 when I woke up, so that is an improvement.

Boo: My nerve pain is bad today. I think it is the weather. I have noticed that it tends to be worse when a storm is coming. I am like an old farmer: "My knee says it will rain!"

Yay: My butt incision is finally healing. I know: it has been six weeks! It keeps tearing and gaping. My friend put butterflies on it a few days ago, so it cannot open back up. Hopefully it is not growing MRSA inside of it. I cannot really keep it clean without getting the butterflies wet. I do not want to take them off, because I want to give the tissue a chance to knit together and STAY.

Boo: I am depressed. I am just sick of being sick. Cliched but true. I am becoming reconciled to the idea that I will not be healed. It does not matter how much faith I have.

On Friday, I met with my shrink, Ruth, and I had one big question I wanted answered: How do I not have a stress response when I am too sick to do basic life tasks? I realized that I am becoming stressed and anxious when I am sick in the morning or when I go to bed without having recovered from the day. I am learning how my MS operates and improving at predicting how things will go. For example, if my fatigue is at a 9 at 10:00 am, I am going to be incoherent by noon if I continue to do taxing things like, oh, sitting up.

So I talked with Ruth about that, and she did not have answers. She said to hold onto hope, and I said that I do not have any. I also said that I did not think that my thoughts were distorted; I thought my predictions were reasonable based on experience. And she agreed. She agreed that there is no reason for me to hold onto hope, but that somehow I should anyway. I should find a way. And that she was holding onto hope for me. Then she offered to have her husband give me a blessing.

As he began the blessing, I was thinking of a word, a half question that I could not really formulate into a complete thought due to my fatigue. Right after I thought the word, he said it.

This was not a blessing of healing, but it was a blessing of knowledge. I knew that I will not be healed, and that knowledge was a little bit comforting, because at least I can know what to expect. It is kind of like when a child acts out repeatedly and then the parent begins to discipline the child. Every time he hits, he sits in time out. And somehow the child feels less anxious. I am not saying that I am being punished. I am saying that boundaries and set expectations are comforting, in a way.

But I am still not happy to be sick! When I am this sick, I want so badly to die. I just want it all to be over. I find joy in small things, I love my kids, I have fun sometimes, blah blah blah, but my body is being tortured from the inside out. And it is getting worse, not better. So many times these past two weeks I have thought of my bottle of Percocet. I like having it around, just in case. Of course, I have so many meds--I could easily concoct a home remedy if I wanted. The only thing that keeps me from doing that is my best friend, who would never get over it. So I am living for her.

Miserable

The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.

Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.

PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.

I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.

I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.

Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)

I hate MS.

Klonopin

Dr. Rob's choice of anti-anxiety med was Klonopin 0.5 mg. Hmm... Well, I do not have anxiety. But I do have tearful "downness." And I think it is making me more tired, if that is possible. At PT today, Dave kept asking if I was okay. Maybe I am a little out of it. My thinking was already slow before that.

Hopefully it helps me sleep. I do not care about addiction anymore. I am in survival mode. Actually, I am in not-really-caring anymore mode. I do not want this life.

Mercury, Sleep, and Liberty Jail

I had such a decent morning yesterday, but then it all went downhill. That was disappointing. Oh, well.

Last week I had a blood test for mercury poisoning, at my request. The symptoms have some overlap with MS. I got the results this morning, and my mercury levels are in the low normal range. That was also disappointing, because mercury poisoning is somewhat fixable. MS is not. Oh, well.

There was something I wanted to blog about last night, but I was too tired and depressed. Now I cannot remember what it was!

My word, I am so tired. I got up very early to ride into the city with my friend and interpret for her audiology appointment. I did go to bed early so that I would get eight hours of sleep, but I need more. I read that people with MS need 8-10 hours of sleep during times of remission, 14-16 hours during relapses. Goodness! That sounds about right, though. I am inept at napping, but I do try to lie down sometimes when I am super exhausted. 

Fatigue stinks. Today is another cloudy, scratched bead. 

I saw two of my students from last year, which was fun. I helped a mom feel good about giving her mommy instinct to give her child more attention while he is sick. The child is frequently sick. I guess dad says not to baby the child. Poor mom was feeling guilty about giving a sick child extra attention.

Oh! I know what I wanted to write about yesterday.

My shrink suggested reading Elder Holland's talk about Liberty Jail. It was good. Now I forget what exactly I wanted to say about it, but I did want to write about it. 

I liked the reminder that God really hears our prayers, sees us, loves us. But I did NOT like the reminder that when hard, lonely times come, we need to endure. That stinks! It is hard to feel like God loves me when my body is falling apart, I feel scared and lonely, and my prayers are not answered.

Some of my prayers are answered. But the big ones are not.

Of course I have wondered what I did that was so bad that I deserve MS as punishment. So I liked the section called "Even the Worthy Will Suffer." I do not think of myself as very worthy, but I can see that if totally innocent people suffer, so could I. Maybe it is not constructive to think that I have done something wrong or wonder why this is happening. But I cannot help thinking that if I could figure out why it is happening, I could stop it. Somehow.

And I again reviewed my patriarchal blessing and reminded myself why I am on earth. I have two very clear purposes, as well as another related to one of those two. I can still do those things, even with a deteriorating body. The hard thing is doing them AND working. I do not know how to do other things than work, because it wears me out.

Today I have an earache. What the heck? I was incredibly painful for a couple of hours this morning. Now it feels better. I made an appointment with my internist, Dr. Rob, for tomorrow. Since it feels better now, I do not know if I should go, but I think I will. I would not want that feeling to recur.

Oh! One lady at church works in the office next to Dr. Gabby's new office. Weird... Crazy Dr. Gabby, she sure made things hard on me last year!