To bathe … or not to bathe?

The answer seems fairly obvious. I use to hop out of bed, put the coffee on, jump into the shower, get ready for work and then off I went. I never gave it a second thought.

Today, I don’t hop or jump anywhere, I no longer work, and yes, to bathe or not to bathe requires much thought, consideration and compromise. If you have never heard of or read The Spoon Theory, read it here. Bathing requires many, many spoons for me.

Not only do I have the pain and restrictions from RA, but I also have skin tightening and itching from Scleroderma. Both are aggravated by water! So, it comes down to whether or not I think I’m smelly and dirty – of course I’m not!! I do change my clothes and still wash the obvious areas. I actually have about 2-3 showers/baths a week and I think that I’m doing well. The energy it takes to undress, bathe, sometimes shave, dry, lotion, dress, hair etc is sometimes all I can do in a day. Sad maybe, but I prefer to spend my energy doing things that give me a least a bit of joy.

When I have doctors appointments, yoga , or social get togethers, I bathe. Sometimes I resent feeling that I have to. To have a shower and go to the doctor will wipe me out for the whole day and often longer. The exception to this is if I have a long, hot bath with epsom salts. I crawl up and out of the bath (literally), put Tiger Balm on every joint and recline in my chair with heating pads. It feels great!!

 

Biologics

On my next visit to my rheumy I’m suppose to have chosen a biologic to start on: Enbrel, Humira or Simponi. From the little bit of research I’ve done, including talking to some people who are/have been on each of these, I think I might start with Humira. Of course, this is subject to change at any time. I’m really dragging my feet over this one. I don’t know if I want to start on a biologic at all! My current list of medications includes:

Methotrexate, Leflunomide, Meloxicam, Adalat, Nexium, Synthroid, Cyclobenzaprine, Folic Acid, and lots of supplements – B12, Magnesium, D3 etc.

My doctor says that the inflammation in my body has not gone down enough. My ESR is usually in the 50’s or 60’s and normal is 2-30. I know that I’m in pain most days and my mobility has become very restricted but if those were to go away, what is the cost? I’m most worried about getting some sort of infection and not being able to fight it. I’d be interested to hear from people in the same boat or perhaps already on a biologic (not necessarily one of these 3).

Unproductive Weekend

I felt shitty all weekend; worse than usual. Most of my joints were sore at some point, sometimes all at once. I seem to be having more troubling swallowing, a common symptom of Scleroderma. If it gets much worse I guess I’ll have to go for another Gastro endoscopy! Yuck!! My eyes have also been very dry, thank God for eye drops! I should buy shares in one of the companies! I had my Methotrexate shot (25mg) on Sunday evening so it’s common for me to feel crappy for a few days. Wednesdays (sometimes lasts until Thursday) tend to be my best days and then it starts to go downhill again. One big, happy cycle.   Thank God for my lift chair! I am in love with this chair. Will write about my lift chair very soon!