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Looking for some support
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An_215795 posted:
I have had RA for about 15 years and getting worse. My friends and family just can't understand what its like...I look healthy on the outside. Just want to share...I don't have health insurance so hard to try the biologic drugs and see a rheumatologist regularly, Was on methotraxate, but side effects were terrible. Anyway, just looking for people who understand what this disease robs you of.
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Byroney_WebMD_Staff responded:
Dear Anon_33379,

I'm sorry to say that many here share your story. Have you checked the "Resources" links in the right hand column of this page? If not, there are two you might want to check out: one about free and low-cost health care options, and a second one about affording your prescriptions.

Here's an article on Alternative Pain Treatment methods that might be of interest to you. Here's another one on Diet and RA that may also be helpful. Finally, here's information on RA, Work and Disability . You may want to consider contacting a lawyer who does disability work and see what your options are.

You're always welcome to share your story here,

Byroney
 
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RAWarrior responded:
Dear Anon,

I understand. Bless your heart. It is hard. My friends & family don't get it either - except for my kids. I even started a blog and they don't even read it. If you'd like to have a look at it, it's here: http://rawarrior.com

Are you getting any help with the meds? I know most of the drug companies do have programs for the uninsured. I know several people who use those. There are some links about that in the resources tab on the right of this page. I hate methotrexate too, but it helps some & it's pretty cheap. :P

Kelly
 
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An_215796 responded:
I have had RA in both hands for a few yrs now. Mostly in the left(already the joints are crooked and swollen). My aunts on my father's side had RA. Guess I was unfortunate enough to inherit from them. You are so right how friends and family don't understand the pain unless they have it also. Sometimes my joints in my hands burn. I too do not have med ins so rely on generic-over-the-counter arthritis meds. They do help to some extent.
 
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shaithcos responded:
I understand. I was diagnosed with RA in January but had it for awhile. I had a quack rheumatogist for 3 years and went undiagnosed. I now have considerable bone loss and joint damage and. And yes, people don't understand, not even family . Enbrel has a program that you can get injections for free (6 months) then 10 dollars a month for injections (valued at $2000 per month for 4 injections)
 
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barbgoodm responded:
I started out with JRA at the age of 12. I am now 47 and taking biologic medicine for about 3 years. I have deformities and feel real blessed that I finally found somthing that could slow down the progress and help with the pain, inflamation. Perhapes if you went to the state they could help you get medical insurance. I have found a web sight that is just for people with RA. This is for anyone with RA (http://cobi.communispace.com ) It is called RA Voices and there are other that feel like you or need to just know that there not alone
 
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orginalurbancowboy responded:
I know what you mean as years go by it gets worse. I have been on my doctors butt for over two years to see a specialist as a nucular scan showed that I was full of arthritis but have been waiting and waiting etc. and now they say they will get me into a specialist iln July. I looking into some more of this as the legs will only hold me so long and the pain is bad but not but. looking into the mayo clinic it sounds like there is systoms of Fibermyolia!!! being it is in the legs so much have you check the mayo clinic hot line out lately
 
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dfbdar responded:
I have RA also along with crohns disease, so I know exactly how you feel. Until someone has to deal with having a disease on a daily basis for a long period of time they have no idea what it takes to just get up out of bed everyday, let alone try to carry out any daily activities like holding down a job or taking care of a family or even trying to do tiny bits of housework at a time. Some days just taking shower is all I can handle for the day. Other days I dont even try to get put of bed the pain is just to much. Please dont give up on your family though, you have to try to make them understand. As for the biologics, talk to your doctor. There are programs that are run by the drug companies that make humira or embrel and other biologics which sponsor people who cant afford the drugs and need them. Your doctor should have his nurse help you get in one of these programs . They usually pay for the whole thing. My doctor told me this after my insurance company was giving me such a hard time approving me for humira. They finally decided to pay so for the next 6 months i am covered and will get reevaluated after 6 months. Dont give up and talk to your rheumatologist they will get u on one of the drugs, cost shouldnt stop u from getting the medicine.
Darlene
 
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beth7h responded:
Hi Anon,

I understand the difficulty you are going through with people understanding what you are going through. As for the medications, I see many others have posted here with solutions to drug companies who offer reduced prices.
So, as for the friends & family...it is very hard to educate them when it comes to RA. They just hear arthritis, and their minds blank out after that.
I feel your pain, as I have encountered much disbelief from friends and family who just didn't understand. They just think it is "Grandma's Rheumatism".
You can try forwarding them the clinical info you find on various websites; you can forward them info on RA, but most people do not read/see the devastation this disease can cause.
I truly understand your frustration, as do many other sufferers. We can only hope to educate. Sometimes removing the term "arthritis" helps. I have found if I tell people that I have "an auto-immune disease that attacks my joint and destroys them" works better. Don't give them the part of the name-"Arhritis"
Good Luck to you...I hope you find relief from your pain, and understanding from your fam. & friends.
 
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7corinne responded:
Hi
I also have Ra and didn't have insurance for the bologic drugs the companies that make Enbrel,etc have free funds for people to obtain the medicine as i did for 2 yrs. I'm now on disability & have found foundations help pay for copays Yes people with Ra look healthy on outside even after 9 yrs my family still forgets I have Ra,but I'm 57yrs old and still look good. Looking good & well groomed does make me feel better even on off days I make myself(female) dressup & put makeup on . I took me awhile to ignore what other people think & do what I need to do to live with this disease This is the first time I'm on the discussion board. Good Luck
7 corinne
 
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Chelseapeddler responded:
Hi Anon,
I feel your pain. I was diagnosed 5 years ago. I find, like Beth, that the best thing to do is tell people you have "an autoimmune disease where your body thinks it is allergic to your joints and attacks them". If you say 'arthritis", everybody tells you they have it too. I also stopped eating wheat 4.5 years ago (it is a natural inflammatory). After 4 days I felt way better. Although this is inconvenient, it is the single-most thing that improved my pain level. It is easier to do now that Celiac disease is so common-place. I am on Methotrexate, I also find it disagreeable. I worry about the long-term affect on my organs, but have young children, and have to be able to LIVE! Take care, I hope you find a med source.
 
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aw410 replied to 7corinne's response:
Hi Corinne, thanks for your reply...we have a lot in common. I am applying for disability, hope I get it...thanks for the info on the meds...I'm 59 and I do the same, get up, get dressed, and stay clean and try to keep my home cleaned...This is the first time I'm on a discussion board too, but just needed to talk to others, and get ideas and know that I'm not lazy, that the fatigue is real...someone did make a good point, we have an auto immune disease that attacks our joints, maybe that would work better. How are on you doing on the Enbrel, are there side effects and do you still have to take other meds? Thanks for listening.

Anna
 
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sadie33135 responded:
Helly friend, I feel your pain. I am a 32 year old business owner with RA for 5 years. Ever since diagnosis, I have felt compelled to keep RA my secret so no one will pity me or judge me incapable of succeeding (and when I say "no one" i guess I mostly refer to myself). I think I have done too good a job b/c even my husband believes there is nothing wrong with me and gets very put out when I have to go to the doctor. Now we are trying to get pregnant, so I quit all meds "cold turkey" minus 10mg of pred daily. The RA got into my eyes and gave me inflammation of the iris, which is quite painful and impaired my vision. No one understands why I don't walk quite right, can't lift heavy things, and go home after work with zero energy. I understand what this disease robs you of... but I am determined to not let it rob me of the miracle of having my baby. Thank you for listening.


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