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.

It's Official--Yes, Again

Monday night Dr. Rick declared me in another flare, with the probable lesion in the thoracic spine. I began steroids on Tuesday--five days of 100 mg prednisone. Dr. Rick did not want to go higher due to my history of bad reactions.

Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.

It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.

One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.

The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.

Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.