rambling rosemarie

My rheumatologist is a genuinely funny man. Hes decided to scrap the drug therapies we were trying to go in an entirely different route. He knows I don't like taking drugs so when I asked him, "And what are the potential side effects to this drug vs. the potential benefits?" He was ready. After a long pause and with a pensive look on his face he said; "Side effects? You mean besides the third leg you'll sprout and the way your skin turns green? Nothing that wouldn't seem normal to you. You *are* from California, right? Yeah anything that happens shouldn't alarm you." His theory is that my pain isn't caused as much by my arthritis as it is by nerve damage that decades of untreated pernicious anemia has caused. He wants to try a drug that works by d isrupting my neurons abilities to deliver pain messages. I am becoming so sedentary I am willing to try anything that will get me back into life. Less pain? I am in. Let the disruption begin! Th...

What do you do when you know something is wrong with your body and yet all the tests provide no definitive answer? I can open my mouth and show you the sores in it. I can show you where my tongue has turned color. It's not cancer, it's not a stain. It's a mystery. I can show you the rash on my face. It is not lupus. It is not rosacea. What is it? Why does it accompany extreme fatigue and joint pain? You can see my eyelids are red and angry looking but antibiotics, ointments and eye drops don't make it go away. My guts aren't working properly but it's not colitis, Crohn's, not a h-pylori, but they are inflamed. Why? What do you do when you don't know what you're fighting? You rejoice. I am a saved woman. It's all good after that. You pray. Pray for patience. Lord, help me cope with these annoying and often debilitating symptoms as befitting a woman of God. And please, let the doctor changing my medications be a step in the right direct...

Trust me, if you can visualize what I am about to relay to you, you will laugh. I want to assure you that it's OK. I think it's funny too. Now it is funny. Earlier this morning? Maybe not so much. I suppose when you start to laugh could have some implications but I truly think if you don't laugh I would be more worried about you. I'll leave that up to you to decide. Yesterday was a gold star day for my accomplishment journal. I pulled some of my fall and winter clothes out of the back closet, laundered them and sorted them. May not sound like much but using my hands is what aggravates my neck injury. Reaching up to hang things in the closet or to bring them down from the rack is also painful. Along with the pinched nerves in my neck that compromise the use of my arms, I have had carpal tunnel syndrome for the last 18 or so years. I have ignored the clothes in the back closet for almost 3 years so I was ever so proud of myself until about 2am. At first I though...

Accomplishment Journal: I made lasagna for my BFF to feed her moving crew. I cleaned part of my kitchen. I complained bitterly about not being able to respond to an urgent request for volunteers from the disaster relief folks I joined. Wait...that's not a positive thing.... scratch that one off the list. I uh.... huh... I am pretty sure there was something else I did.... but I can't remember. None of it is "refrigerator material." Well, the lasagna went in the fridge, but nothing to proudly display on the outside. All that said, it was a good day interrupted by the occasional pity party. I'll send out invitations to the next one if you'll all agree to kick me in the backside when I start feeling sorry for myself.

Back when I could work for a living, which seems like forever ago, my employer paid a long term disability insurance policy for me in lieu of paying for medical benefits. I was blessed to have good insurance through my work in public safety. God's providence in that is the only reason I have maintained an Internet connection, food in the fridge, car insurance and can purchase the gas to drive the silly thing. I am grateful for the policy. I try to remind myself of that when I have to fill out the scads of paperwork they require from me to document my disability. It really does take an emotional toll to have to write over and over again all the things you cannot do. It also piques my sarcasm. I want to write things like, "I will never be able to participate in yak racing again" or "just the other day the pain in my neck was so severe I realized my days of being a casteller are behind me." I am not sure they would appreciate my humor. It's what I do t...

This morning I had to sit and and fill out multiple forms for my disability insurance. It's physically painful to sit and write, especially long hand. What was more painful was listing all the things I have lost the ability to do. Adapting to your circumstances and finding solutions to the problems of not being able to do what you used to do is important for your mental well being. I can't make the vertebrae in my neck healthy again. I can't make my sciatic nerve happy or the arthritis go away. I can manage what I do and how I do it. I want to be able to contribute to live and society and have to learn how to do that within my physical limitations. I have to learn to adapt my house to be manageable within my physical limitations. I think I am going to start blogging about those tricks I am learning and hope to hear from others who have learned some simple adaptations that have helped them manage their lives. It would be nice to have a place to trade those secrets. ...