my battle with RA

by Amber

Well I am a 31 year old woman with an 11 year old son. A year and a half ago I under went a total right hip replacement.

After surgery I started having pain in my hands and wrists that wouldnt go away. My hands were so swollen and red and hot to the touch. I found that every day things were becoming increasingly harder to do.

I cant sleep because the pain increases at night as does the swelling. I hate going to places because I feel like I have to guard my hands for fear of someone bumping into them. Sometimes I cry because I feel like I am losing my independance and feel like there is no hope.

My family knows whats wrong with me but I dont think they totally understand just how truely painful this is and how it effects so much in my life. My sister says my hands look like ET, which is kinda funny and I am not offended by it. My boyfriend (father of my child) always make fun of the way my hands look when I walk or asks me to do things he knows I cant do and when I say something about it he makes fun of me by saying oh I forgot "your hands hurt". Sometimes he will just thump my hands in what he sees as a playful thing but he doesnt realize the amount of pain it really causes to me.

I hate having to ask anyone in my house to open stuff for me becasue they all sigh with inconvenience or suck their teeth. I know it doesnt just effect me but I feel like they just dont understand and that I
have become such an inconvenience to them.

It gets really depressing at times and there are days I just want to end all suffering not only for me but the burden to everyone else. I cant work. I am rapidly losing function in my left hand to the point I cant turn my hand (as if I am going to receive something from someone). I cannot bend either wrist, my fingers lock up all the time and when they do and I cant move them I feel so paniced for fear I will not be able to move them again.

I had insurance (through my boyfriend) up until a few months after my hip surgery. I saw my Dr for the pain in my hands and was able to see a rheumatologist once before my boyfriend lost his job due to cut backs.

I am unable to get medical insurance because of this condition they all turn me down. Discount programs are a joke and arent very affordable. I
I've tried for medicaid but they put me on a monthly $1600 share of cost. With one income and rising cost of everything we cant afford the office visits let alone treatments.

(Thank you Amber for writing in. I wish I had answers for you in regards to medical, but being Canadian myself I don't know how to get around the problems with lack of coverage in the US.

I would be happy to work with you on your diet and lifestyle with the goal being to reduce the pain brought on by lifestyle.

For anyone reading this, if you know how Amber can qualify for some type of medical coverage, please let us know. Together we can make a difference)!

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Mar 30, 2011
How is advanced is my RA?
by: Elise

How do I know how advanced my RA is? I am 29 and have had symptoms for 2 1/2 years. My father also has RA but his symptoms don't seem to be progressing as fast as mine and he is 68 yrs old. Why is mine so out of control at such a young age?

Oct 21, 2009
Just Diagnosed With Disease
by: Suzette

I was recently, (two days ago to be exact) diagnosed with the disease, i had the symptoms a while now but the tests were negative, now its inevitable i have the disease and it scares me i have been reading and researching and when i see how painful it can be and how much it can cripple one's well being it depresses me. I live in Jamaica and i don't believe we are as advanced as some countries where treatment and sourcing same is concerned, that too worries me. I am sorry for your pain i just pray that there will be a breakthrough for us all one day soon. I have so much to learn about this disease.

Jul 15, 2009
by: Janet

I worked at a Foundry Supply company in Ontario, Canada, 19 years ago for 3 years. We dealt with coal dust for GM, and silica sand for Kelsey Hayes. Every day, when I blew my nose, it was pure black, and had to constantly change the air filter in my car. I was so young, that I really didn't even think about it. The damned government didn't ever regulate safety hazards at our work!@!!!!!!!!!##$%$%^^&&&**((I now have RA...and with searching on the net, have realized it was from this!)

I am fuming! Really fuming!

Does anyone know how I can go after the government for this?


Jun 09, 2009
by: Anonymous

I am sorry for your pain and agony...i wish you the best...but honestly your boyfriend is a scum bag and you would be better off without him....and people around you should help and you need to speak up and say hey ASS****

Mar 29, 2009
Comment to Amanda
by: Anonymous

first of all you need to get rid of that insensitive boyfriend....thumping on your sore hands? Give me a break and kick him right in the nuts and ask him if THAT hurts. Any one who is that insensitive to your illness does not deserve you and there are many men out there that would be happy to have a caring woman even with an illness like yours

Aug 26, 2008
Hang In there
by: Jackie

Sorry to hear about all the trouble. I have RA, OA, Systematic lupus, degenerative joint disease, and Asthma. I was turned down by Social Security twice. It took almost two and a half years to get approved. I know what you are going through but lucky for me I was able to get on my husband insurance but the cost for drugs through his employer is very costly. I have a 17 year old and a 7 year old. People are not sympathetic to this disease because everything is not visable. They kind of think you are just lazy and it is furstrating. My husband just returned fro Afghanistan in May and it was hard getting people to help even on bad days. This disease will have you up one minute and back down with the blinkof an eye. It affects my knees so bad that most days I hate to walk. Ask your doctor for all the samples that he has and explain your situation to him. There are alot of companies that offer samples and help through the internet.

Aug 20, 2008
Trying for social security
by: Anonymous

Hello - I am sorry to hear about all the trouble you are having. I have RA and Lupus and diabetes myself. I am 41 with a 12 year old. Divorced because of my diseases. Anyway, I applied for social security and then appealed the denial and got it. It is not much but I do get medical coverage. Also when I did not have medical coverage I went to the ambulatory clinic in my town hospital and got free care, free testing and they told me where to go for low cost medications. Also as someone else wrote you can apply for medications through the companies that provide them. It does take time to complete the paperwork but then they do help , I did it. I do have medical now and live on disability.
Good luck to you. Hope this helps.

Jun 29, 2008
Check thew drug companies
by: Janet Weber

I believe that US drug companies will provide medications free of cost for someone in your situation. You can talk with your doctor about this program. Check with social services in your area for medical programs that would meet your needs.

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