Nanci K..."livng" with RA

By nk41042 Thursday, October 02, 2008

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I feel your pain...REALLY!! I was diagnosed when I was 26 years old and had a 3 month old and a 4 year old. I lived in a great od two story house and I worked as a veterinary technician part time, a job I loved. It took a long time to come up with a diagnosis and (my family doc) when I was diagnosed (in 1978) I was told to take aspirin every 4 hours, quit my job, move to a one story house, take 2 two hour naps a day(at least) and sleep 10-12 hrs a night. Needless to say, I drove home crying...with little hope of a normal life again. I was an active "tomboy" whose greatest love was playing with my sons and riding horses!

My mother stepped in to help by saying..."You need a second opinion from a specialist." She saved my life as I knew it. I found a rheumatologist who was Mayo clinic trained and he was wonderful!! I had the best physical exam I had ever had and his question to me was "What is your goal? What do you want to do?" I told him I wanted to be able to be a Mom and ride my horse. His response to me was "ok...let's get to work." I am forever greatful for Dr. Weaver.

I have been through the gammet in the past 30 years, Ascriptin, prednisone, methotrexate, other NSAIDS, even gold shots! Now I am on methotrexate - 3/week, 5 mg of pred every other day, Celebrex, and Humira every other week. I am not perfect and have had knee and knuckle replacements, but I still work part time (only because a wonderful employer took a chance on me and knows what my limits are) and I go riding!!! I can't compete, but I enjoy just being on my horse and having my endorphins kick in! I now have four grandchildren...8,5,5 and 3 years and I can even keep up with them! They all love horses too! There are days I can hardly get out of bed but mostly that is mind over matter and I make myself move. You can't give up. Courage is a definite asset.

I have a golden husband who has supported me through this for the past 30 years of RA and 36 years of marriage. We are true partners! It takes enormous stamina, supportive family and friends and the newest and best RA treatments. If you aren't going to a Rheumatologist I would highly recommend it! If you need a shoulder there are people out there who will listen. I will!

Take care of you. Rest when you can, but keep going! I don't ever plan to be in a wheelchair, but 30 years ago that was a huge possibility. Modify your life but please don't ever give up!

Nanci... "living" with RA since 1978!

Comments (7) | Add comment

Galen Gilchrist

10/ 2/08 11:31am

I have been living with RA for 45 years, being diagnosed at the age of 19. It went through my body fast and furious. I gave birth to two daughters having to get verycreative in the way I moved them around the house.

I have had both knees replaced and an ankle fusion. I know this disease can be depressing and there are days when you swear you will not be able to get out of bed. Take it slow and be like the little engine that could. "I think I can, I think I can." Having a positive attitude helps, but there are days when you feel there is nothing positive about it. It helps to smile even when you don't feel like it. The mere act of smiling changes the endorphins in your brain and you will feel better.

I wish you luck and keep the faith.

nk41042

10/ 2/08 10:48pm

I love your analogy of "The Little Engine That Could." Ain't it the truth!

I remember picking up my baby with my upper arms because my hands just couldn't do it.

I hope that when I have been at it for 45 years I can be as positive as you are. I, too, have some pity party days when positive just isn't there. That is when I am especially blessed with an understanding boss(friends) and my husband...because all I want to do is stay in bed and pull the covers up over my head. Keep the faith...we are stronger together! Nanci

psd

10/ 2/08 9:16pm

My first thought when I read both of your stories was Wow! I am 43 and have only had RA about 15 years or so,maybe longer my mom and I suspect I actually started as a teen, only 8 years since I was diagnosed. I know how much a positive attitude helps. Finding a good rhuemy is the number one thing. I hate going to doctors but I was lucky to find a good one the first time around. Somedays are tough it's true but somedays aren't. You both are inspiring to me, thanks!

nk41042

10/ 2/08 10:51pm

I know I am a Pollyanna, but it gets me through a lot. You sound like you are "living" with your RA and that's what we do. We are tougher than most and don't give up! Well some days I do get back in bed and pull up the covers and hide! We are allowed that now and then...I feel it is my body saying STOP!, slow down and rest. God bless you....Nanci

Galen Gilchrist

10/ 6/08 3:25pm

I agree with you, a goodRheumatologist is paramount. It can mean the difference between an experiensce such as you are having, some good days and some not so good, and a horrible experience with the disease.When I first had it there were no Rheumatologists and was told by doctor after doctor to take aspirin u fntil my ears rang which I did. I finally found a really good Rheumatologist and things started to get immediately better. Yes I too have had bad and good days, but it is my life and I try really hard to make the best of it. Don't say you have only had RA for 15 years. When you have it regardless how long some days seem like forever. - Galen

diane carter

10/25/08 2:59am

hi i read your comment, and just want to say you keep going, i have been suffering with joint pains since may 2008 and gradually got worse, one day shoulders another day knees, wrists, hands,time of the month its worse,and i live every day taking anti inflammetrys and pain killers.i work as a teaching assistant in a primary school,and have two very young children , some days i cant even pick my youngest up, which frustrates me, and house work.......i see a specialist next month for the first time and just hope he can help with this misery and help me to pick my children up again and cuddle them like a mum should without any pain, i also suffer with an under active thyroid which on information doesnt help.

nk41042

10/25/08 6:59pm

You hang in there Diane. I know it is tough, but going to a specialist is the best thing you can do for yourself and your family. You also have to be your own advocate, ask questions, and sometimes demand answers or specific treatments! I was diagnosed with being Hypothyroid prior to my RA diagnosis, which is interesting that you were too!

There are things to remember: Ask for help, rest and let the "stuff" go until you are up to it. I did find that sleep was something I really do need to get, a good 7-8 hours at night and a brief nap if you can. I always tried to take a nap when my boys did, cause I needed one too! Taking care of you is most important. I highly recommend the book "Simple Abundance" and urge you to get it. It becomes a close friend as I read each day and remember "me" time. I learned to pick up my kids with my arms because my wrists couldn't do it. They would also climb up onto the couch for me to lift them, or crawl onto my lap. I know it is a challenge, but it is worth it. There are so many wonderful new medications that, if they get you started right away, could keep your joints from being damaged further. If you need to just talk or blow off steam or just need a prayer, let me know. Nanci

Nanci K..."livng" with RA

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