Hello everyone!!! And by everyone, I'm talking about me and my one follower!! Hello and thank you for being interested. I am sorry that I have been so horrible about not posting more often. It has been over a year since my last post, and a lot has changed. I will try to keep my posts shorter than the previous 2. I hope by posting more often, that will help. This one might be long to get all caught up.
Well, we have lost our medical insurance. I have not had a remicade treatment since May of 2010. I am in an indescribable amount of pain daily, but I try to remember it could be worse, and others have it worse than me. I go to the Dr and pay cash when I can. I pay cash for all the prescriptions I can afford. The remicade is over $10,000 a treatment ( I guess because of the hospital fees), so needless to say I cannot do that. I cannot do anything to stop the progression and damage of this disease, so I am managing the symptoms for the time being. I take Oxycontin for the pain, with mobic. I take zoloft for the depression. I take topamax for the migraines. That is about all I am taking at the moment, although I am surprised how cheap some medicine is without insurance. I have to give a big thank you to Walgreens and my pharmacist, they are always looking out for me and ways to save money.
Although I am very embarrassed by it, I do want to post photos of my skin and how it looks. I would also like to post photos of my finger and toe nails to show that damage as well. I will also try to post photos of my most swollen joints.
I have learned a lot about myself this past year. I do what I can, when I can. I don't stress out if I cannot get something done at the exact moment I want to. I just try again later. I take alot of naps, I love naps. I am learning how to be slow. LOL, I am slow, I have no choice about that, but I am learning to handle it with out all the anger and fear. I learned I have to conserve my energy. If I know I have something important coming up, I cannot waste energy days before trying to do things like grocery shopping, or anything else that uses my energy. I take the motorized carts at the air port now, instead of trying to just tuff it out and walk. So when I get where I am going, I have that much more energy in me to do things I want to. Little changes like this have helped me alot.
My marriage and husband are still great. We have had a few bumps, but nothing horrible. He tries the best he can and is still amazing. I know all of this is wearing on him, I try to stay positive and upbeat for him and myself. Before I started with the motorized carts in the airport, I tried the wheelchair service, but that upset him too much. He did not like seeing me in a wheelchair. I have a hard time getting in and out of bed some days and he helps me alot with that. LOL one day, I was trying to stretch and I got stuck on the floor. I was down there for almost two hours. I tried so hard to get up myself, but I could not grip with my hands to pull myself up and my feet and legs were so bad, I could not put weight on them to push myself up. I had to wake him up to help me get off the floor. Now I avoid anything that may cause me to end up in a situation where I cannot get up. He worries about me while he is at work, but someone has to work. I just try to stay in bed and sleep when he is not here if it is going to be a bad day for me physically.
Weight loss. Well, I am down 40lbs, It has not helped with my joints as much as I hoped, but maybe over time that will change. I do not know how I lost the weight. I am a little alarmed, but I go to the Dr on Thursday and will bring it up then.
I want to start to share more about my life, my projects, and my pets. So hopefully there will be more photos to come!!! I am working on a sewing project I have not touched in over a year, but I think it will be good therapy for my hands, so I want to pick it back up. I have my cats, we have 8, my parrots, and the dog. They all help me stay sane in my day to day life.