Wednesday, March 16, 2011

Wow, I'm suprised I remembered the password

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. 

1 comment:

  1. My dear the weight loss is a "positive" side effect from the treatment you used to be on. It can last a long time and it is Good for your joints but can be a little scary at first because it is so unexpected.

    The same thing happened to me the first time I started on Enbrel. Have you looked into one of the injectables? Enbrel, Humira... And the new one you inject once a month. (Cannot recall it's name at the moment.)

    Since you've tried Remicade and had good results (?) the injectables are something to look into. They do run about $2,000 a month but if your doctor writes a letter explaining why you need it and you can show through your finances that you simply cannot afford the price of the treatment (who could at that price) they will cover the cost and send the injections to you for free.

    It's something worth looking into.

    Take Care,