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  • What rheumathoid arthritis is like

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    Old 06-26-2006, 09:57 AM   #1
    Irishgal
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    What rheumathoid arthritis is like

    It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough.

    Some days I need splints, a cane, ACE wraps, or even a wheelchair. Other days I don't. Just because I don't always need those helps, doesn't mean I'm faking it.

    My pain can travel from joint to joint from day to day or in fact, hour to hour.
    I sometimes need a handicapped spot. I don't like it. But, I need it. I may look healthy enough that I don't need it but walking out of the store, I will likely be having problems walking.

    The medicines I take may have nasty side effects. I know this. I don't need reminders of this from someone who doesn't live in my body and feel my pain. I don't enjoy taking the medications but I have a disease that needs to be medicated.

    Don't lecture me about the addictive nature of pain medications. I know the risks. And don't judge me for using pain medications. It doesn't mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life.

    Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don't move right and other symptoms. Sometimes, I'm grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don't look "normal". This is all due to RA.
    Please don't suggest "cures". RA has no cure (at least now). So, I have it, it is incurable. Live with itI do. I trust my doctor and the treatment plan we've worked out between us, so please don't try to convince me you know a person who "cured" themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they've been "cured".

    If you've ever broken a bone, think of that pain and magnify it. Then imagine all over your body. That's how I feel at times.

    When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I'm not doing it to slow our trip down. I don't take joy in having a hard time getting moving after sitting for awhile. Don't hassle me over it.

    Don't assume when you hear the word "arthritis" that I mean osteoarthritis, which is what most people think of when hearing arthritis. Most people associate the word with the wear and tear arthritis of aging. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I'm not too young for either. Infants get RA as well as adults. Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I'm not too young for arthritis, please don't tell me I am. And if you still think I am, well, my body and doctors say different so I'm going to listen to them, not you.

    I may need to rest more often than most people. It's not that I'm lazy. It's that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time.

    I may not have "just" RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems.

    I don't enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don't assume I'll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don't try to make me feel guilty. And if I say yes, but have to change my mind later, please don't be angry. I don't like doing that but sometimes despite my best planning; I just can't make my body cooperate.

    There are things I can do that I also enjoy doing that may look like a struggle to you. Please don't try to "protect" me by taking things from me or stopping me from doing something. If I'm doing something and not asking for help, it is because I am ok doing that. I'll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don't just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don't be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn't apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.)

    Just because I look healthy, doesn't mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy.
    Please do not think it is funny to force me to shake hands and then use a crushing grip. It's not funny and it's quite painful to be honest. Also please don't assume because I don't shake hands that I'm a snob or anything other assumption. It's just quite painful, even if my hands look normal.
    Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me, whether it is activities I enjoy, my job, my ability to do some of the things I found simple before. To me it may seem like I've lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA.

    Do not assume I'm "just depressed". Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don't need to "get out more" and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can't do as much when I go out.

    Also please don't try to convince me that changing my diet will "cure" me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn't help everyone.

    Also, I don't need to be told I need more exercise. I'd like to be able to exercise more but may not be able to. That is frustrating enough. I don't need to hear from others that I'm not doing enough.

    Last edited by Irishgal; 06-26-2006 at 10:03 AM.

     
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    Old 06-26-2006, 10:16 AM   #2
    Kissa
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    Re: What rheumathoid arthritis is like

    Thank you for a very well written post. I think that it can be applied to many diseases and chronic illnesses as a whole. It is very frustrating when you meet someone and they tell you "well you don't look sick" or that you're too young to be suffering so much. If that were a hard fast rule then why did my health problems start at birth and why did my Arthritis set in at age 10?

    Sadly people are uneducated when it comes to Arthritis as a whole, there are well over 100 different forms and the average person is not aware of it.

    Don't be upset when someone is ignorant about your disease, instead, look at it as an opportunity to educate them. Maybe they'll think twice next time before stopping to say "well you look healthy to me" ..

    Barbie

     
    Old 06-27-2006, 09:29 AM   #3
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    Re: What rheumathoid arthritis is like

    Beautifuly written well done!!!!
    I loved the part about pain meds, and was very interested in the "invisable part"
    When we have the cane or mobility device time, for me it is visable either in the forms of swelling and or poor twisted up fingers that do not want to work.
    Oh the fatigue part, can you remember a time when you were tired and took a nap and woke up fine?
    With the fatigue in this it is blow me over some times. With no energy to do even the simplest tasks. Also what seems so easy for some from tieing a shoe to opening up a jar is like climbing a mountian to us. There are just those times that the simplest of things become a mountain.
    Thanks for your writing appreicate it .

     
    Old 06-29-2006, 06:55 AM   #4
    Baybreeze
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    Re: What rheumathoid arthritis is like

    AMEN, Irish! It's amazing how often we here all those things.
    I agree on the fatigue part. Geez, without the fatigue at least I am still able to get some things accomplished. But when that fatigue hits it's dreadful. It seems there is no energy left to do anything but sleep. And it feels like I've had gallons of lactic acid poured into my body or something; just to raise your arm to comb your hair feels like you've done a million pushups or something. or to walk up a couple steps could feel as i've you've just climbed mount everest.

     
    Old 07-01-2006, 08:13 PM   #5
    ginlyn
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    Talking Re: What rheumathoid arthritis is like

    Irishgal
    The way you wrote about Ra and how it affects people like you and me and others you did it so well. I just needed to tell you how you said it and wrote about it is how I know I feel and could never put into words, as well as you did. If only I could still bounce that well!
    Ginlyn

     
    Old 07-05-2006, 09:55 AM   #6
    mak0395
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    Re: What rheumathoid arthritis is like

    Thank you, by the time I was finished reading your post I was quietly crying at my desk. Oh how many times I wish I could have said or explained what you just did. Thank you for putting my feelings into words. I was diagnosed with RA at the age of 38 (6 years ago) and almost everyday of my life since then has been a struggle.

     
    Old 07-05-2006, 10:10 PM   #7
    barbarasmith999
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    Re: What rheumathoid arthritis is like

    what is the best medicine for this kind of arthritis?

     
    Old 07-06-2006, 10:13 AM   #8
    Kissa
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    Re: What rheumathoid arthritis is like

    I don't think there's really any specific "best medicine" but more one that works for you. There are medications for example like Enbrel and Methotrexate, which seem fairly common, additionally some doctors will prescribe medications to control pain and sometimes steroid type products. There's no magic answer. You have to work with your doctor and often try an array of medications to find the one or ones that work best for you. Finding a good Rhuematologist is the best start, then it's just a matter of time.

    Barbie

     
    Old 07-06-2006, 04:57 PM   #9
    Avrod6
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    Re: What rheumathoid arthritis is like

    THANK YOU, you have put into words what many of us try to tell others all the time. I hope you don't mind that I have printed this out to have my husband read. I think I will just leave it on the refrigerator
    VERY WELL DONE. I hope everybody gets a chance to read this. I cried (a good cry) all the way threw.
    Avrod

     
    Old 07-07-2006, 05:09 AM   #10
    joanie58
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    Re: What rheumathoid arthritis is like

    Irishgal, you put into words what most of us feel every day. Your post described every aspect of RA and not in those hard to understand medical terms. I would also like to print your post and give it to anyone who asks "what exactly is RA?". Even my parents don't quite get it. I was just diagnosed this year (I'm 47) but I've been having symptoms for a while, just didn't know what the heck was wrong with me. I told my family but I can tell by their responses that they think I just have osteoarthritis. Your post will give them a better handle on this disease and why I sometimes had to beg off family gatherings because I couldn't handle being in a car for more than 2 hours. Thank you, thank you for taking the time to write it and my hope is that a cure is discovered in the near future and we'll all be pain free!!

    Much love to all!

    Joanie

     
    Old 07-07-2006, 06:55 AM   #11
    L.Romesberg
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    Question Re: What rheumathoid arthritis is like



    Your description hits the nail on the head!! I've been diagnosed with RA for a few years now. I have grown rather tired of the age old saying of doctors, "all you got to do is exercise and lose weight" to feel better. Or better yet, "it's all in your head". You are "imagining your pain"..really? Could I imagine the test results too, stating I have RA? I never did understand that one! If I was to imagine something, it sure wouldn't be having pain 24/7 with little to no relief. I can think of better things to imagine than that!

    About this age old "diet and exercise thing", how do some of these GP's expect people like ourselves to exercise when every joint hurts and the mere thought of moving around hurts you?? I, like the rest of you have good days and bad. Although, it seems there are more bad than good. I not only have RA, but I suffer with Meniere's Disease, diabetes, neuropathy, and a rare genetic blood disorder and to top it all off I suffer with major depression too!

    I feel insulted when doctors tell me that I should feel "happy and that I should feel more positive about myself etc. etc" I don't feel happy all the time. It is impossible to be in a good mood 24/7. It's unrealistic for any human being to be that way regardless if you have RA or not.

    It is nice to know I can talk to people that have the same problems I do. It is also nice to know I can vent too. I find it very tiring to try and maintain a good sense of humor all the time.

    I am new at this forum stuff, so some guidance would be nice. I do have a question however. I am now faced with the option of taking monthly injections for my RA. I am nervous about it because of hearing and reading about the side effects of such drugs. Are the side effects worse than the pain? Who else is taking the injections and do they help with the pain and improve mobility? I am tired of not doing what I once enjoyed to do, but yet at the same time, I am scared to take the injections. If anyone could help me with this decision, would be greatly appreciated!

    Is weight loss expected with these types of drugs? What about vomiting and diarrhea? Hair loss? Liver problems? TB? Give the facts to me straight, I don't want anyone to sugar coat a thing. I need to know...thank you!

     
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