ONE THING OR ANOTHTER

Well, I really am improving and my lab results are almost normal. I’m finally able to taper almost completely off of my methylprednisolone. The pain in my muscles has lessened, I’m getting more mobility in my arms and legs. I can almost lift my left arm above my head and my right….well, it’s still a problem but improving. I have had a concern when walking down the stairs of my knees buckling beneath me. That would be bad. Falling up stairs, which I’m quite good at, is one thing. I don’t have far to go before I land, but falling downstairs would be bad. Not only would it be a big drop, but natural instinct is to put the hands out to stop the fall and my arms don’t hold my weight, so I would fall flat on my face from a big drop. Then there would be the issue of getting up. So, feeling as if my knees will buckle is scary.

I woke the other night with the most excruciating pain in my knees. Both of them, though the pain in the right was worse and radiated down to my ankle and up into my hip. Nothing I tried alleviated the pain; heat, ice, elevating my legs, straightening my legs, walking…nothing, save pain meds. I tried the milder ones first and got about 30 minutes of relief then I went to a double dose of the big guns. That helped for about an hour and I was able to sleep a little. First thing in the morning I called my Doc and was able to see him. I am the Queen there, you know. Not every patient they see has a rare autoimmune disorder. He suspects ‘aseptic necrosis’ of the bone in my knees caused by the steroid. Which in essence means my bone is dying without infection. Nice. So, he’s ordered another MRI. He also thinks I have tennis elbow. I don’t even own a tennis racket.

The thought I have is this, every time, I see improvement, I have a set back. So, am I creating these set backs to avoid having to assume responsibility? Even though, the fact that no one else in this house is assuming the responsibilities and it’s making me crazy? I say that I can’t wait to be able to mop the floor, clean the house, straighten the laundry room, drive… I keep having these set backs. The treatment for the bone necrosis is to drill a hole into the bone to encourage blood flow. So, undoubtedly, I would be in a cast for a few weeks. Would I also be in a wheel chair since my arms are too weak to support me? I wonder if once the grandkids are gone, and my mental attitude improves, if these set backs won’t improve also? I’d ask “What else?” but I’d probably get an answer.

WHAT IT’S LIKE TO BE 152

Well, as this disease progresses, I become less and less mobile. Moving is what I assume to be similar to being 152. I know there’s something wrong when my 79 year old mother walks faster than me and has to hold me up. Therefore, moving is contraindicated. However, sitting is BORING! Some days, no matter how interesting the subject, I can only read so much.

It’s one thing to have difficulty moving, it’s another thing to be totally mobile one day and not the next. It’s one thing to have one set of muscles improve, yet another to have another set deteriorate. It’s one thing to tell the hand to move to the mouth yet have it drop your food on your lap. It’s one thing to say I feel like I’m getting better only to find it isn’t so.

And it’s a damned pisser to get hit so suddenly and be so crippled. I’m too young to be this sick.

Somehow, I never imagined I would experience anything like this, I've always been so boringly healthy. There are many emotional challenges to this, so perhaps that's the purpose for my experience. I have to choose where I invest my energy since it's limited. Physically, there is only so much I can do, so I have to look away when I see that the floor needs to be swept and mopped. Some days are harder than others. Little family annoyances become even smaller as I choose whether or not to get involved. On the other hand, there is a lot of time for contemplation.

My children are all fine, grown adults and are happy with themselves and their lives. Even though the youngest is 23, I still worry about who will be there for them if I'm not. They have each other and are truly supportive of one another. But, what if they need me? I worry about that sometimes.

Maybe, I’m the lesson and not the student.

"The Life and Times of a Pseudo Quadraplege"

The ‘Law of Attraction”. The law of attraction basically is we attract what we like. I find this interesting in light of the situation I’m finding myself in. It started just after New Year's, I began developing a rash on every body part that is impossible to cover; in a stylish, fashionable manner that is. Hands, face, forearms, chest, you know, body parts that are normally exposed. The rash was uncomfortably itchy, and spreading like wildfire so of course, I consulted my doctor. Actually, I consulted several. The general response was that this was an autoimmune rash. Accompanying the rash was an increase in muscle pain and weakness making it impossible to stand or walk at times. And, fatigue, I could hardly stay awake! This was most disturbing to me. I am finally facing and looking forward to enjoying an empty nest. I raised four very fine adults all of which are happy, healthy and on their ways to successful lives. Now it's my turn. My turn to travel, go back to school, spend time on my photography and writing goals, whatever I want. I had also just returned to my study of energy healing and have set many goals for myself in that respect alone. Why would I attract this to myself?

Well, after being poked and prodded and stuck and having microscopic skin samples removed from inside and out, blood samples every time I visit my doctor and getting no clear diagnosis, just countless prescriptions for antihistamines, over priced steroid lotions and a shot in the butt of cortisone all of which was totally ineffective, I began doing my own research. I researched "autoimmune disorders", of which there are about 10 or 12. The descriptions of the disorders I found on the internet included photos. Well, what do you know? There are pictures of people with a rash similar to mine! Down my arms, across my hands, around my cuticles (which were the most painful causing a need to wear gloves to avoid the slightest bump) and even my eyelids. "Dermatomyositis". I was a textbook case. Armed with the information I gathered from the internet, I visited my doc and blood tests confirmed. Now what?

Dermatomyositis is a rare disorder that affects roughly 5 to 10 people per 100 million world wide. It's something doctors learn about in med school, yet never expect to see. My mother's doctor, in 50 years of medical practice, saw one case in medical school, so he is quite interested in my case, treatment and progress. Can you imagine a doctor actually interested in a patient and not even his own, so he isn't even getting paid? They don't make them like that anymore.

In any autoimmune disorder, the immune system attacks and destroys healthy tissue, in this case, skin and muscle. I was referred to a rheumatologist and was able to be seen rather quickly, but my physical condition had deteriorated to the point of being pretty helpless. It's like I'm 3 again. I can't comb my hair, brush my teeth or even dress and feed myself. Good thing I love 3 year olds!

"The Life and Times of a Pseudo Quadraplege" is by no means intended as an insult to those with disabilities. In a sense, since I have limited function in my arms and legs, I am quadraplegic, but only a little. I can walk and use my arms to an extent. But, I have a lot to learn about working within those limits. I hope this blog to be educational, fun, funny and enlightening to anyone who may stumble upon this. To those with serious paralysis or disabilities, I admire you and hope to be able to learn from your examples of determination. To those new to the limits, perhaps this can be a help.

Though, to all who read this, I wish you peace, love and happiness.