Losing faith

I try to be one of those people that do not lose faith or hope.  But at times I just can't help it.  Like tonight for instance I wasn't able to walk without crying.  The RA has spread into my hip and if I move my leg a certain way I really feel it.  I can't really help the way I walk this is just crazy.  I never thought being in my 20's would ever feel like this.  When I was 16 I use to think I can't want to graduate high school go to college and start a career.  I graduated high school in 2004.  I went to college right after high school and in 2006 is when I got hit with RA.  I tried to work through it as best as I could. 
 Last year at this time I had to quit working.  I got wrote up for walking too slow and I went on a year leave of absence I wasn't going to let them take my job away from me.  I worked as a cashier at Wal-Mart and I begged and pleaded with them to move me from being a cashier because it hit my hands so much that I couldn't even lift a gallon of milk.  They always told me I was making up the pain so I could take long breaks and lunches.  When you work an 8 hour shift you get two 15 minute breaks and an hour lunch.  When it came time for my breaks I would use the restroom and come right back.  If I sat for 15 minutes it was too hard to come back.  I always struggled after coming back from lunch.  So I am not sure where they got these long breaks from. 
March 5th is coming and they refuse to extend my medical leave of absence so I am force to quit.  In my mind I feel like I gave into the diease.  I know I didn't because I am not able to do much.  Both of my ankles are collasping and when I walk around wal-mart I can only make it for 20 minutes before I am ready to start bawling.  I can't bend over and pick up anything off the floor or to get something off the floor.  For instance today i wanted to make some Tuna helper I forgot to have my mom get me the pot i need to cook it in before she went to sleep and I wasn't able to bend down and get it out off the shelf. 
I am suppost to start this new medication called cimzia.  Its a shot twice a month I guess is what the doctor wants.  Well I am waiting on insurance approval.  They haven't even approved a request that was put in January 1st.  Without insurance its 4000 a month.  I have a patience assistance card that will cover up to 500 a month.  so I am hoping the insurance will drop it down to where the insurance card will cover it.  I'm this will be my miracle drug but I have been on so many that were suppost to work I am not holding my breath I do have hope that it will work.
I am just getting so frustrated i want to be able to go out and have fun but I can't even make it down the stairs right now.  I have this cat that is indoor and outdoor when I first took him in I didn't realize he sprayed before I knew it I was already attached.  He lets me know when he wants to go out he only sprays if I don't let him out when he wants.  Today I didn't realize he wanted out it was 12 degrees out he sprayed a little on my blanket I wasn't able to make it down the stairs to go wash it. 
I wished I had some friends that would come over and visit me to be a distraction away from the pain but my friends are too busy to come over.  Or they don't think I am in pain like I am and they just want to go on ignoring me.  Even getting into and out of my car is killing me because its so low to the ground.  If I was able to work 16 hours a week I would get another car that was higher up but my income is limited and I can't afford a car payment. 
For my pain relief I am taking two perocet every 4 to 6 hours but I try and hold off to the 6 hour mark.  and I try to limit myself to 4 a day but I have enough for 6 a day.  he gives me 180 a month.  They only really work for an hour.  He tried me on ms contin worked up to taking 100mg 3 times a day that only lasted two weeks.  I asked if there was another extended release med I could be on he said they all work the same way. 
I really have no purpose to this journal entry except just ranting.   I know I rant alot but it seems like every day that goes by it gets worse.  It doesn't even stay the same it just keeps going downhill.   Now my ankles are spasming does anyone who has read this far can tell me what would make the ankles spasm?  I am guessing its spasming or contracting either and or who knows.  I just wish it would all stop I want to be able to do things for myself and not have to have people alway open bottles for or lift things that are heavier then 2 pounds.  i want to be able to bend down and get a pot or pan that i need to cook with. 
I know things happen for a reason I just wished I knew what this reason is.  I am glad that I do have the disability income.  I am glad I got approved on the first tryI just wished I didn't need it.  I wish I could go back to work full time on March 5th but in all honestly if they wrote me up for walking too slow who wants to work under that kind of pressure.  Its currently 3:45am and I can't sleep due to this pain and I am not sure if anyone is reading this but if you are I appreciate you sticking it out to the end.  Any advice on my ankles would be great.  I guess I feel better getting this out/

Replies

deleted_user
deleted_user

Your story really fits into mine. A year ago I was a happy emt who loved his job, then I had a knee injurey, doc said simple surgery I will be back on my feet in a few weeks...well surgery never worked pain got worce, then two other knee injuries and two more surgeries..nothing helped. So sadly I had to quit my job and it has been over a year since I worked and now I only get sicker. My idiot ortho never bothered to figured out why my kness were failing so badly...

Then it got to the point that every joint in the entire body hurts, I can\'t do anything anymore. I sit down I have to think about how will I get up, I had to ask my wife the other day to help me stand up. Now to boot none of the docs really know what\'s wrong with me and I go in for test after test with no answers, I am out of work and wracking up a major debt that I have no idea how to pay off.

I agree with you this is not living and this is not fair and when everyday is a struggle it is just a nightmare. My only saving grace sometimes is my wonderful supportive wife, I don\'t suffer alone. I hope you can get some friends that support you, do you have a man in your life prorably not. I wish I could help you more then offering hugs and nice words, but the magic wand got lost in the dryer with my two left scocks...

Try and hang in there and if you need something I am here for you.
lovebaby8
lovebaby8

Thank you for your kind words it means alot to me. My mom is going through what you are going through test after test and not finding out what is wrong with her. She is getting frustrated I don\'t blame her I would be frustrated to and I know your at your wits end. I just hope they figure out something for you.
deleted_user
deleted_user

i so wish that you didn\'t have RA. it saddens me to know you are in such pain. If i lived closer, i\'d come visit if you wanted me too. ((((hugs)))) love, Nita