MY TURN

Living With Arthritis

Pain may define my condition, but I won't let it define my life. 

Newsweek Web Exclusive
Jan 4, 2008 | Updated: 11:22  a.m. ET Jan 4, 2008

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  • Posted By: tlbrandon @ 01/08/2008 10:09:04 AM

    I was diagnosed with RA in my late 30's with two children in Elementary school and working part time. It started with waking up with a stiff neck and several day's later my elbow and then my thumb so bad that I was told I could loose the use of my thumb if I continued to work and use it. Because I am Sero Neg. the doctor's just blew me off with sore joints and muscles for about a year then misdiagnoses it until I had carpal tunnel surgery and a biopsy confirmed RA. Since then I have been also diagnosed with Diabetes due to the steroid use, Fibromyalgia and 3 years ago Lupus and 2 year's ago Sarcoidosis. At 17 I also started loosing my hair repeatedly with is now confirmed an auto immune disorder.
    I have to strongly DISAGREE with the statement that RA can''t kill you, your right that the illness it's self probably wont but as my Rhumatologist told me as I was setting in a chair for a 2 hour IV treatment that the Med's will. Also people with RA don't usually stop there, the auto immune system keeps crashing and other systems and illnesses will compound the problem.
    RA attacks the joint's, Lupus attacks the organs and different systems and Sarcoid causes the body to form scar tissue any where inside and outside usually starting in the lungs.
    My family is really good about dealking with the life I'm forced to live, I Ieft the hospital from being the youngest person in my area to have a total knee replacement and was wheeled to my daughter's high school to watch her last musical performance.
    So every time I take the handfull of med's I need to get through the day, everytime I have IV's put in my arm and set through first a 2 hour IV and now I'm on a different med. that take's an hour and everytime I have to either take strong narcotics for pain every few hours or patches and everytime I balance several different doctor's appointments each month, I know this is my life, I deal with it, not always so great but I make it.
    So don't tell me or other's who deal with this mess that it's not life threatening, you try it for one day or week or month and tell me it's just sore joint's.
    PS People who glare at those of us who do use disabled plates because I know how I walk in and how I walk out can be two very different issues and I'm so tired of the snide comments, people standing in the spots refusing to move, one lady even chased me down in the store to tell me how I was like all those people who abuse the system, when I explained the problem and how may pain meds etc. I take to get out she just said I just should stay home then.

    • Posted By: b.robinson @ 08/29/2009 2:21:51 AM

      I found your posting very helpful. I have not been able to get a proper diagnosis from the specialist. My general practitioner feels I have RA. I have a lot of pain in both sides in the joints. I have chronic fatigue among other symptoms. I just want to get the right medications to try to keep the RA from destroying my joints any further.
      I also recently found out that I have kidney disease.
      Why is it so difficult to get the right diagnosis?

  • Posted By: meyerk8810 @ 01/06/2008 10:32:19 AM

    I agree, Pain may define my condition, but I won't let it define my life. I was diagnosed with JRA when I was 15. However, it took me 5 years to find a doctor. So, you could say I probably had it at 10. I was in intensive care about 5 months after my diagnosis. I turned 16 in the hospital. In Junior High and High School I couldn???t play sports so I managed the boy???s basket ball team and girl???s volleyball team. High school was very tough. I got Shingles at 17. There were days I could barely walk, but I had to. I never told anyone about having JRA. At the end of high school, a girl asked me if I had really tried to kill myself. (Because of my long hospital stay when I was first diagnosed.) I then told myself it was time to stop keeping this to myself. It???s better to tell people what I have then them come up with their own idea.
    I went away to college. My first year I rarely ate and came home at the end of my first year sick. I made it through college with a lot less flare up then I had in high school. When I graduated I moved from Iowa to Washington D.C. Everyone expected me to move back after my student teaching. They couldn???t see how I could take care of myself. I had a few days I could barely get off the floor, but I took care of myself. At 25, I was diagnosed with Lupus. The doctors had told me about it when I was 15. Since I have lived in the D.C. area I have couched cheerleading, received my Masters in Technology and have been promoted from a teacher to a technology specialist for a very prominent school district. I have also given birth to two wonderful children. One was born at 27 weeks and weighed 2 pounds and the other born at 35 weeks weighing 5 pounds. I am raising my children by myself. I take 10 pills a night. I have constant back pain, neck pain, wrist pain. You name it I have it. There have been nights I have to crawl up the steps of my townhouse. Ask me how am, I will say ???FINE??? this pain I have is part of my normal day. I don???t know what it???s like not to have pain. It???s been 18 years since my diagnose of JRA, 8 years since my diagnose of Lupus. Every day is a fight, but I do it and I do it with pizzazz. Ask anyone I work with, they would tell you I do my job with energy, I never slow down. They don???t know I crash when I get home. I have had a good life; I wouldn???t change anything because JRA and Lupus is a part of me. It just doesn???t define me. I love my Life.

    • Posted By: marnieh_1234 @ 04/18/2009 1:54:52 AM

      wow. an inspirational read, i truly admire you :)
      i too have JRA and first got it when i was 7. it was in remission for awhile, but it came back last year (year 10 ).
      its been tough, and the physical pain is horrible to live with; but i think emotionallly, its been harder for me.
      i havent told hardly any people about it. i just don't know how to and i don't want to be treated 'different' to everybody else. high school is tough; but with RA added onto that its 10 times worse.
      THere is rarely a day where im not sore or tired, but i wouldn't go back and change it at all.
      Living with RA has made me realise so many things about life, and its made me a better person.
      Yes, it is hard coping with the physical pain; but its taught me many lessons and definately made me have more patience. haha.
      peace
      ps. my email is marniehannebery@hotmail.com
      I'd be delighted to share more experiences there with you.
      xxxx

  • Posted By: DJ108 @ 02/20/2009 4:58:15 AM

    Why should any one suffer silently is not clear to me. It is a degenerative disease. How can any one claim that it is not reversible. Please mark my word reverisble; I did not use the word 'cure'! Yes, I believe that any degenerative disease is reversible. But it requires honest effort. It requires tremendous efforts. It is possible to garner determination to make such an effort provided one has passion for life.

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  • Posted By: kcms@greenhills.net @ 06/14/2008 7:39:18 PM

    Very well said. I understand all to well about chronic pain as a person with MS.

  • Posted By: mikkas @ 03/20/2008 9:00:44 AM

    I am 46 and I have had arthrits for 26 years. I have found talking to others with arthritis really helps and staying positive of course. None of the new anti TNFs work for me so I am just on anti inflamatories. A good website to visit and meet others is www.arthritiscare.org.uk

  • Posted By: mikkas @ 03/20/2008 8:59:53 AM

    I am 46 and I have had arthrits for 26 years. I have found talking to others with arthritis really helps and stayiong positive of course. None of the new anti TNFs work for me so I am just on anti inflamatories. A good website to visit and meet others is www.arthritiscare.org.uk

  • Posted By: mikkas @ 03/20/2008 8:57:13 AM

    I am 46 and I have had arthrits for 26 years. I have found talking to others with arthritis really helps and stayiong positive of course. None of the new anti TNFs work for me so I am just on anti inflamatories. A good website to visit and meet others is www.arthritiscare.org.uk

  • Posted By: shuston77 @ 03/19/2008 1:42:32 PM

    Have you tried Remicade? It has worked wonders for me - I am symptom free for two years!

  • Posted By: donjones @ 01/10/2008 12:09:48 PM

    My wife has RA. She has been in recession for about six years. In the beginning she was taking metheltrexate(spelling) made her very sick. We started using natural remedies plus vitamins and MSM. Now it's back with a vengence. Is there anything that has has anyone that is natural? She said she will never take a medicine that makes her RA better but destroys her organs. Thank you, DJ

    • Posted By: lucindalou @ 02/19/2008 12:44:41 PM

      I have an aunt who has Rheumatoid Arthritis and she has been to so many rheumatologists, been on Humira, Methotrexate, Enbrel and nothing helped. Her daughter started selling this drink which is all natural and now my aunt is pain free on no medications. Would you like me to find out the name of it for you? I'm sure you could find someone in your area who sells it. LCarr @2/19/08

  • Posted By: david zavala @ 01/16/2008 5:14:03 PM

    I truly appreciate your positive attitude. Thanks for sharing and caring for others.

  • Posted By: david zavala @ 01/16/2008 5:12:55 PM

    I appreciate your positive attitude. Thanks for sharing and caring for others.

  • Posted By: tlbrandon @ 01/10/2008 6:18:17 PM

    This won't fix the problem but it help's me get to sleep at night and that is that each evening I take a soaking bath using "Lavender Bathereapy" found in the bubble bath isle at Wal Mart etc. My husband was the one who pointed out that he could tell the night's I soaked and relaxed because I slept better and fell asleep easier. I just thought it was a good time to catch up on my books.
    I use a book holder to read, have a glass of juice and the batherapy and I feel so much better afterwards.
    When I'm having a hard time moving around I hear this go soak for awhile. Works for me and I've tried a lot of different over the counter things and this one actually works.
    Good Luck...

  • Posted By: meyerk8810 @ 01/06/2008 10:32:14 AM

    I agree, Pain may define my condition, but I won't let it define my life. I was diagnosed with JRA when I was 15. However, it took me 5 years to find a doctor. So, you could say I probably had it at 10. I was in intensive care about 5 months after my diagnosis. I turned 16 in the hospital. In Junior High and High School I couldn???t play sports so I managed the boy???s basket ball team and girl???s volleyball team. High school was very tough. I got Shingles at 17. There were days I could barely walk, but I had to. I never told anyone about having JRA. At the end of high school, a girl asked me if I had really tried to kill myself. (Because of my long hospital stay when I was first diagnosed.) I then told myself it was time to stop keeping this to myself. It???s better to tell people what I have then them come up with their own idea.
    I went away to college. My first year I rarely ate and came home at the end of my first year sick. I made it through college with a lot less flare up then I had in high school. When I graduated I moved from Iowa to Washington D.C. Everyone expected me to move back after my student teaching. They couldn???t see how I could take care of myself. I had a few days I could barely get off the floor, but I took care of myself. At 25, I was diagnosed with Lupus. The doctors had told me about it when I was 15. Since I have lived in the D.C. area I have couched cheerleading, received my Masters in Technology and have been promoted from a teacher to a technology specialist for a very prominent school district. I have also given birth to two wonderful children. One was born at 27 weeks and weighed 2 pounds and the other born at 35 weeks weighing 5 pounds. I am raising my children by myself. I take 10 pills a night. I have constant back pain, neck pain, wrist pain. You name it I have it. There have been nights I have to crawl up the steps of my townhouse. Ask me how am, I will say ???FINE??? this pain I have is part of my normal day. I don???t know what it???s like not to have pain. It???s been 18 years since my diagnose of JRA, 8 years since my diagnose of Lupus. Every day is a fight, but I do it and I do it with pizzazz. Ask anyone I work with, they would tell you I do my job with energy, I never slow down. They don???t know I crash when I get home. I have had a good life; I wouldn???t change anything because JRA and Lupus is a part of me. It just doesn???t define me. I love my Life.

  • Posted By: meyerk8810 @ 01/06/2008 10:32:10 AM

    I agree, Pain may define my condition, but I won't let it define my life. I was diagnosed with JRA when I was 15. However, it took me 5 years to find a doctor. So, you could say I probably had it at 10. I was in intensive care about 5 months after my diagnosis. I turned 16 in the hospital. In Junior High and High School I couldn???t play sports so I managed the boy???s basket ball team and girl???s volleyball team. High school was very tough. I got Shingles at 17. There were days I could barely walk, but I had to. I never told anyone about having JRA. At the end of high school, a girl asked me if I had really tried to kill myself. (Because of my long hospital stay when I was first diagnosed.) I then told myself it was time to stop keeping this to myself. It???s better to tell people what I have then them come up with their own idea.
    I went away to college. My first year I rarely ate and came home at the end of my first year sick. I made it through college with a lot less flare up then I had in high school. When I graduated I moved from Iowa to Washington D.C. Everyone expected me to move back after my student teaching. They couldn???t see how I could take care of myself. I had a few days I could barely get off the floor, but I took care of myself. At 25, I was diagnosed with Lupus. The doctors had told me about it when I was 15. Since I have lived in the D.C. area I have couched cheerleading, received my Masters in Technology and have been promoted from a teacher to a technology specialist for a very prominent school district. I have also given birth to two wonderful children. One was born at 27 weeks and weighed 2 pounds and the other born at 35 weeks weighing 5 pounds. I am raising my children by myself. I take 10 pills a night. I have constant back pain, neck pain, wrist pain. You name it I have it. There have been nights I have to crawl up the steps of my townhouse. Ask me how am, I will say ???FINE??? this pain I have is part of my normal day. I don???t know what it???s like not to have pain. It???s been 18 years since my diagnose of JRA, 8 years since my diagnose of Lupus. Every day is a fight, but I do it and I do it with pizzazz. Ask anyone I work with, they would tell you I do my job with energy, I never slow down. They don???t know I crash when I get home. I have had a good life; I wouldn???t change anything because JRA and Lupus is a part of me. It just doesn???t define me. I love my Life.

  • Posted By: meyerk8810 @ 01/06/2008 10:31:26 AM

    I agree, Pain may define my condition, but I won't let it define my life. I was diagnosed with JRA when I was 15. However, it took me 5 years to find a doctor. So, you could say I probably had it at 10. I was in intensive care about 5 months after my diagnosis. I turned 16 in the hospital. In Junior High and High School I couldn???t play sports so I managed the boy???s basket ball team and girl???s volleyball team. High school was very tough. I got Shingles at 17. There were days I could barely walk, but I had to. I never told anyone about having JRA. At the end of high school, a girl asked me if I had really tried to kill myself. (Because of my long hospital stay when I was first diagnosed.) I then told myself it was time to stop keeping this to myself. It???s better to tell people what I have then them come up with their own idea.
    I went away to college. My first year I rarely ate and came home at the end of my first year sick. I made it through college with a lot less flare up then I had in high school. When I graduated I moved from Iowa to Washington D.C. Everyone expected me to move back after my student teaching. They couldn???t see how I could take care of myself. I had a few days I could barely get off the floor, but I took care of myself. At 25, I was diagnosed with Lupus. The doctors had told me about it when I was 15. Since I have lived in the D.C. area I have couched cheerleading, received my Masters in Technology and have been promoted from a teacher to a technology specialist for a very prominent school district. I have also given birth to two wonderful children. One was born at 27 weeks and weighed 2 pounds and the other born at 35 weeks weighing 5 pounds. I am raising my children by myself. I take 10 pills a night. I have constant back pain, neck pain, wrist pain. You name it I have it. There have been nights I have to crawl up the steps of my townhouse. Ask me how am, I will say ???FINE??? this pain I have is part of my normal day. I don???t know what it???s like not to have pain. It???s been 18 years since my diagnose of JRA, 8 years since my diagnose of Lupus. Every day is a fight, but I do it and I do it with pizzazz. Ask anyone I work with, they would tell you I do my job with energy, I never slow down. They don???t know I crash when I get home. I have had a good life; I wouldn???t change anything because JRA and Lupus is a part of me. It just doesn???t define me. I love my Life.

  • Posted By: armida @ 01/05/2008 7:16:43 PM

    { was diagnosed at 30 with RA- I laughed at the Dr, I'm not laughing now. I was a trauma nurse, and respitory therapist and was forced to retire at age 43. Now al;ong with RA I have osteoarthritis, and degenative spine disease-with 7 damaged discs. I've had 10 hand surgeries, 2 on my cervical spine (neck), 2 elbows 4 on my feet, wrists, both knees with osteoarthritis and live in constant pain, I'm on Enbrel injections for the RA, take soma, nuerotin, have a pain patch, and take dilaudid for extra pain control. I've been told by 6 back surgeons they can't do anything about about my back-went through pyhsical therapy, muliple shots in my spine, and now I'm told to live with my pain. And that's what I do! I swim, play with my grandkids, and laugh at life. I spend weeks in bed etting over flare-ups, but have a wonderful husband who takes great care of me, The bad days are coming faster and faster. I'm runnimg out of ideas of how to fight this disease-HELP! I'm only 51 and feel my life is over-done the shrink-more drugs. What do i do next?

    • Posted By: Ischcabibal @ 01/06/2008 6:34:17 AM

      Armida I know what your going through.I've had the same problem for 15 years. I tried everything. I posted a comment before on this site. Suggest you contact the
      "laserspineinstitute.com". They use a new procedure with minimal invasive. If your
      interested, you can contact me at 8a2_l01@cox.net
      Al

  • Posted By: shelwood @ 01/06/2008 6:14:49 AM

    I have to disagree with the statement that RA is not life-threatening. For those of us with organ involvement, it certainly is, and even for those without, life expectancy is shortened by RA.

    As for living with RA, I, too, try to be stoic, but sometimes I wonder if that's always best. Since I'm housebound during my worst flares, only those closest to me really understand this disease. Other people don't get why I can't always show up for every party, event, whatever, why I seem to be "lazy" when physical work needs doing. They don't see that a spending two days in a row on my feet equals a week in bed recovering. When I tell them I can never make plans before noon, they say, "Haha, you've never been a morning person." The truth is, I can't walk in the morning because I'm too swollen. And I'm way past the point where I can put aside the Handicap placard, because I never know if my knees or ankles will give out, or my energy will just run out, while I'm in the store (but I do know carts make great walkers).

    It isn't really courage you need to live with RA, or any chronic illness. I used to run into burning buildings before I got sick. That took courage. It was a choice. I don't have a choice about being sick. It takes perseverance. You try to hang on to the thought of the best times, remember the disease is cyclical... or adjust to the new normal. Just keep going. That's not brave, that's life.

  • Posted By: hagemeyer @ 01/05/2008 3:24:48 PM

    I think there is a big difference in the mind set of someone born with JRA and an adult who gets RA later in life. As a child you do not know any differently and you do not concentrate on what you can't do...you just figure out another creative way to accomplish you goals. I have had JRA since the age of 2 and I feel sorry for people who get RA as adults. They have lived a relativly pain free life and now they are in agony. That must be a dramatic change to someones life. I would rather be born with it and not know any differently than be healthy and loose it. That really takes mental stregnth! Some people say children born with JRA must have great courage to get thru,..I just call it my life.

  • Posted By: brooke444 @ 01/05/2008 10:59:48 AM

    One of my best friends was diagnosed with RA when he was only 16. He struggles with it everyday but still mangaes to lead a normal life and play sports. He was never afraid of needles before but since he had to start getting RA shots he nearly vomits at the thought of them. But nonetheless I am still very proud of him because he nearly never complains and perserves through it, It sure takes alot of courage!

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