I have since fuck'd pride, and had a visit with a physiotherapist. He was very kind, and very compassionate, I was shocked. For some reason kind and nice strangers still shock me. I have had to put my safety in his hands at home. It's one thing being bedridden, but it's another thing to not be able to get up easily or take some steps safely. Often those steps are met with tears.
Mr. physio had a bed rail, and a bath bench installed. He supports the use of the wheelchair, of course. The bed rail is to help me up, not keep me in, although there is talk of one of those hospital rails with the tray coming. At my surprise, the bed rail is amazing. I have no idea why, since my feet still are a write off. My path is this, out of bed, one step to reach the footboard, another to grab a chair (which has heavy things on it so I don't topple over with it) another to the doorknob, and the frame, another to the linen closet door, and then to the frame of the bathroom. That is usually adventure enough for one day.
The bath bench is a luxury bench, it has an extended seat so I can avoid stepping into the tub, a backrest and a railing. The first time I used it I had some vertigo or a 'sode as I will explain further. It helps, but is very hard to get used to, and I am still unable to shower on my own. When I am alone I can manage as my Nana called a bath in a teacup. Baby wipes are a lupie girl's best friend in the loo. I try to make it to the living room once a day, but there is nothing to hold on to, and I can't use the wheelchair much on my own either, both for the small hallway and the searing rib and chest pain.
The physiotherapist came back to see how I was doing. We sat on my bed and had a great heart to heart. He said, "You are too young to be in so much pain and to deal with all this." I am proud of myself for not tearing up.
To explain what I call a 'sode - short for what I call a 'lupusode', which let me say what it is not first. It is not a flare, it is not a shooting pain. The pain is steady and it seems that I spend a few hours some days in a strange sort of dizzy, like nothing I have experienced before. Sometimes they can be fun, sometimes damn scary, sometimes it is like a lucid dream, others I am confused. Almost as if my body is reacting to the pain, trying to cope while it doesn't take the pain away.
I have been home for about 6 weeks now and have since gained 10 pounds, so I am a full 98. The newest pain is searing rib pain, mostly on my right side. It starts from my back, tightly under my right breast and feels like shooting straight up to my clavicle. Again, it is constant, and it is worrysome. So much so that I gave in and went to a clinic this past weekend.
Of course being a clinic, we had to pick one issue to deal with. We chose blood. I need a transfusion soon, and I am hoping to get onto a standing order with the ER so that I don't need to jump through hoops as I am now. I am not willing to wait for the blackouts to tell me to go. Monday I went to have the tests done, and I wanted to take a chance and go to the office my lovely Dr. Ron was in, it's quiet, the phlebotomist knows my veins. New nurses were there, and took me right away, again rushed my labs to two-three days. The nurse came back to tell me there was a new doctor taking new patients - in Dr. Ron's old suite, we met, in the same exam room that changed my life. She upped my meds to 2-3 Amitriptyline/night. Today is my second day on the upped dose, and my sleep is a bit better. However, I know that there is no chance that I would function in the grown up world - I am not a complete zombie, yet I wouldn't be able to drive or work on it. What the hell, try it now, what's the worse that can happen, I sleep?
The new doctor also brought up Lyrica, which is a new med recently approved for pain or arthritis and fibromyalgia. You know the commercials, I will be on my knees gardening in no time! I'm not buying lyrica, but I am no doctor, I know my body.
I know there is no pain when I sleep. I can dance again. I can walk and laugh and have adventures!
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