Living, not well, with RA

By amanda411 Thursday, March 27, 2008

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My RA struck the day after my house burned down on Thankgiving 2006. I woke up the next morning feeling like I had the flu - everything ached and I had no energy. Over the next few weeks I started having red, warm lumps spring up on my wrists, hands and feet. 3 weeks later I woke up crying from the weight of the covers on my feet. I couldn't bend my elbows, wrists or fingers and walking was agonizing. I was diagnosed with rapid onset RA in January of 2007.

Being 28, having lost my home, being a single mom of an almost 3 year old and in the final semester of my MBA program was more than a little difficult. I was advised to go on methotrexate right away but put it off for almost a month. Life had changed enough and I didn't want to have to give up being able to enjoy a beer with pizza every now and then. When my doctor promised I could have that occasional beer provided liver function tests were normal I gave in. My RA treatment was complicated by my latent TB. Yes, my grandfather had it and I test positive. I wasn't very good with my INH and disliked the first two doctors I saw for treatment. I was put on 6 tabs of Methotrexate, 15 mg of Mobic, prednisone (varying dosages as I fought bring on this one,) given Hydrocodone, INH and basically ignored.

I moved to California in May 2007 and found the most amazing Rheumatologist in October of 2007. She convinced me to be serious about my INH, got Enbrel authorized for me and weaned me off the prednisone as of February 2008 (am now 27 pounds heavier than normal.) Today she added Leflunomide to the regimen as the 8 tabs of methotrexate + Enbrel aren't making enough of a difference. For the record? Rapid onset RA is really awful. Handicapped permit and cane before 30...

To complicate matters I have Hashimoto's disease, a heart condition and what is shaping up to be Sjogren's! Get one autoimmune disease and get 'em all it seems.

Luckily I have an amazing family who are willing to do whatever is necessary to help get my life back to normal. It's a long process but I'm determined to be 100% again.

Comments (5) | Add comment

Hollybgroovin, Health Guide

3/28/08 10:55am

My heart goes out to you! I have been through a lot with this disease, but you have had endure so much. I too went through a lot of the same things you have as well. My name is Holly and I am 28 years old, but was diagnosed at 25. Apparently I have had this disease foe almost 14 years now, so as you can guess I have a lot of damage from not being diagnosed and treated early on. Sometimes I wonder how people like us are so strong. You have a positive attitude, and that will help more than you could ever imagine in dealing with this disease. I tell people all the time that I am living well with RA. But I don't mean as far as the pain (which I'm sure you know where that can take your mind) or treatment and medications. I am living well with RA, only because I am constantly learning how to deal with the emotional issues it brings. It's so good to hear that you have a wonderful family, that always makes for a great support system. Please know that we are all here for you whenever you need to vent, cry out words, have some advice, or even questions. I wish I had found this site years ago, but I am here now and everyone is so wonderful! I hope you can find comfort in knowing that you are not alone, and that we are all here for you, and have been through many of the same things. I have a link for you if you are interested. It's a blog I wrote on being so young and having RA. I think you could definitely relate. Here it is:

http://www.healthcentral.com/rheumatoid-arthritis/c/9937/20721/life/1/

I hope this helps. Please keep us updated on how you are doing. We are all here for the same reason...Support. Good luck, and best wishes!

amanda411

3/28/08 11:07am

Holly, thank you for the welcome and the support. I'm glad I stumbled across the site yesterday and I hope that I'll find the same comfort that you've been able to.

I guess when you've got a chronic condition you can either wallow and be miserable (thereby making everyone else miserable) or you can decide that you're going to live the best life you can. Sounds as if you've chosen the best route and I applaud that.

sharte

3/28/08 4:02pm

I feel everything hsappens for a reason. I also found this site only a few weeks ago and am so greatful I did. It helps to talk to people who know how it feels.Even though we are all affected differently and at different stages we all know the basics of RA. I feel for you, to have lost your home and find out you have a chronic disease all in one. The first day on this site, I read hollys story of her new meds and her families sacrifice to be able to afford the meds. That day I spent crying literally for Holly, not for me. My disease was put aside my thoughts for me were gone, and I felt for someone else. No matter what we are going through there are always others who have it worse. What ever in life that it is, RA, Cancer, whatever theres always others worse off. Yes its good to be strong and fight, but its ok to give in sometimes and pull the covers over and stay in bed. Knowing there are others to talk to makes the covers come off easier and some days you suck it up and just do it. I am glad to hear others stories and here others med reactions ect. I wish you the best , shan

allenswife02

4/12/08 5:39am

Diagnosed with Polyarticular Rheumatoid Arthritis and Raynaud's Phenomenon at 16. On Social Security Disability and can't work at 20. (Only worked once for a couple weeks every since I was diagnosed! Couldn't do it.) Handicap permit at 20. Diagnosed with Pleurisy at 21. Diagnosed with Infertility at 21. (Never had any kids....yet) Also suffer from Keratosis Pilaris, migraines, allergies,etc. I've been on many medications such as: Methotrexate, Prednisone, Folic Acid, Ranitidine, Enbrel, Humira, Hydrocodone, Tylenol, Ibuprofen, Aleve, Remicade IV, Medroxyprogesterone,etc. Also, in the process, medications have caused more problems and infections constantly. I've had to take things such as: Azo, Fluconazole, Diflucan, Amox, Amoxicillin, Amitryptaline, Zoloft, Paxil and many many more. Also, now I'm having problems with my heart and am using a heart monitor right now to try and figure out what type of heart problem(s) I have. So, good luck to all!

amanda411

4/15/08 12:30pm

Dear Alienswife - I'm sorry to heat that you've had to take assorted antibiotics and have a common skin condition. I, too, have had to take antibiotics and have KP. I don't know that those are necessarily bad things to deal with in life. ;)

In regards to other health issues, sound slike you've been through the ringer. While I can relate to heart conditions and other health problems, I'd left them out of my sharestory as I am here to talk, primarily, about rheumatoid arthritis. Have you written a share story so that others may see it and discuss your health problems with you there?

Living, not well, with RA

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