Sunday, March 20, 2011

Long weekend

Hello everyone!!  Today I am very tired, I have slept most of the day.  I cleaned my bird cages on Friday, Saturday my husband had a football game.  The field is a little over an hour away from our house.  All I had to do was sit there, but sometimes, some of you may know, even that is too much.  The game went well, they did not win, but Brian got to play the whole game and he had a blast.  After the game we went to my cousins house to have a cook out with her, her husband and beautiful babies.  I drove home, even though I should not drive.  I could only go about half way before I had to have Brian drive.  My hands and feet were making it too hard.  No one has told me I shouldnt drive, but I self police that based on how I feel. I drove yesterday because he had a few beers at my cousins, and I always worry about him having a concussion after a game.  I have been awake for a few hours now, and I am ready to go back to bed right this minute, But I am trying to spend time with my husband (even if its indirectly while I do this and he watches TV)

I was at the Dr on Thrusday.  He was not too concerned with my weight loss for no reason and even went as far as to congratulate me.  I am lucky to get more than two minutes (literaly) of his time, and he rarely wants to hear about anything that is wrong. Why do I keep going???  He gives me my prescriptions no questions asked, and he is pretty cheap considering I have to pay cash.  Someday when we move to a larger city and have medical insurance, I will try to find a Dr that cares (although that is hard anywhere)  I do have a great rheumatologist I will contact if I think something is very wrong.  She will check everything she can. If the weight loss continues, I will try to call her next month.  Providing I can pay the bill to see her (she is considerably more expensive than my general practicioner)

That is all for now.  Talk to you soon!!

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.