I was diagnosed with RA when I was 3 years of age. I am now 48. All my life it's been a battle to be as 'normal' as possible. My early years were by far the worse as the disease was rampant. The Rheumatologist prescribed a cocktail of drugs, which I decided I would live without. I sought alternative treatment, through a homeopath, unfortunately to no avail. I changed much of my diet through reading a book by Margaret Hill 'curing arthritis the drug free way'. Whilst this did not cure me. It certainly helped. I managed my disease, believe it or not on paracetamol and pain endurance and sheer belligerence. Fast forward to my thirties and I was struck down with a terrible illness. I ended up in hospital, had a blood transfusion and a diagnosis of ulcerative colitis. I spent a good few years on steroids for the colitis, when I became worse still. I then inherited a diagnosis of auto immune hepatitis, which is a life-long liver condition (I personally believe as a result of the blood transfusion). Whilst I had no choice but to have the blood, I could have died without it. I now have to take life maintaining medication because of this.
Throughout my lifelong battle with my diseases I have continued to work and maintain a certain independence which I feel is key. However, my rheumatoid has continued to work its evilness and I now have a diagnosis of osteoporosis and fibromyalgia. My wrists are becoming alarmingly disfigured and my options for surgery is limited as I have already undergone several operations to try and maintain pain free joints. My surgeon is and has almost run out of options and is seeking advice from colleagues.
Because of all my diseases. The clinician's are finding it ever increasingly difficult to treat me holistically. I have a very sensitive system and cannot take many of the drugs prescribed because they make me very ill and I experience terrible side-effects, so have to cease. Currently, I rely on depo injections (steroid) to control the flare-ups and pain for my RA and take the drug to control the liver condition. I am so stubborn that I will not allow my disability to get the better of me, but this is not the best attitude either, as I am adding pressure to my joints. Everyone that meets me cannot believe and almost refuse to believe that I have all this going on because of how I present myself, but believe me, sometimes like many of you out there you just want to not face it again in the morning because of the energy it takes . Even close family do not understand when you feel like rubbish and yet you still drag yourself out of bed, go to work and put a huge smile on your face. Sometimes, I feel awful because I'm not terribly sympathetic with people that moan about, what I deem to be mundane ailments, which really isn't fair on them. Sometimes, I don't want to have to explain why I am short tempered, or tired, or angry. Sometimes, I really want to sob and cry and stamp my feet at the unfairness of it all. However, I am truly inspired by many wonderful people that I have met on my journey. I have learned so much from people who are so much worse off that I. Also doing so much more. People who have endured horrific loss and tragic accidents, yet still go on daily. They are the true champs for me. All I want is for the specialists who treat me, to think of me as a person and look at the whole picture.
Written by
Loura
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You are very a very brave lady. And because any auto immune disease is not seen y others untill its so bad that we need some kind of aid. And because it creeps up on us we pt up with a little bit more as our health declines .without complaining .this diesn.t help us with our doctors because most of us don.t tell them how bad we feel It also doesn.t help with our family and friend because everyone of us i have met doesn.t complain.but everyone of us has gone through times when we can.t take any more.and when we do even close family say .things like i didn.t know how bad it is or why didn.t you tell me .but we don.t and they should know .i can tell by peoples eye.s how bad they feel .i am my own worse enemy .but you have to take time for yourself.you need to rest when you need to .because know one can do it for you. If you feel like sobbing .do it .i sobbed in front of my r/a doc a few months ago .because no.one was listening to me. Tell them how you feel .last of all if you need a hug .its the best medicine of all.
What a very moving and true account off what we have to go through on a daily basis putting up with this disease, but we rally on and try and live our lives as best as we can, I thought I was bad enough having to give up work at 51 with having RA,OA and Angina but I'm not a patch on what you've had to put up with , but you keep your head up and plod on, your an inspiration to us all xxx
I wish I had something profound to say in response to what you Loura and the two replies I have read so far have said, but I dont. I know I always put a brave face on things and my husband and will sometimes intervene and correct me, but if I dont where will I end up. I was 58 when diagnosed and can no longer work. Im one of the lucky ones. Thank you for sharing your story. ☺
Thank you for your lovely words. Sharing with people who know about living with disease makes a huge difference. Knowing that the words spoke are heartfelt because you all know the realitities. How sad that I read statements declaring that so many people have had to give up work. Maybe through a positive choice or maybe through feeling unsupported. Whichever choice, I find going to work gives me my own independence, where I can be me and positively contribute and feel valued. However, I feel that I will not be able to do this for much longer due to the joint disfigurement and pain. Which is a real blow in reality. A consultant hand surgeon told me to re-train. I asked him how he would feel if he was told the same thing. To which he failed to reply. The point Iis, like i told him. We are people with feelings. Rather than looking at just the problem. We need to be looked at as a whole person. No two people are the same in their response to treatment/surgery/consultations. We should be guided into making informed, positive choices to benefit our health and wellbeing. But many times, the opposite of this happens, and we are railroaded or misguided into believing that what is given is the right thing. Personally I have found many times this is not the case. When I have challenged and asked questions I am made to feel impertinent and should not be making my own decisions. To which my reply is always the same. This is my body and I have to live in it and with it. I ask them what choices they would make given the options and knowledge. Hence, thus is why I currently remain in limbo. My rheumatologist doesn't like me a deal as most drugs prescribed have given me such bad side effects and do not contribute to appeasing my other conditions, one of which being life threaghtening without the correct medication. So it goes on. I await the next battle...
I apologies for my lenfhtly posts. But thank those of you with the patience that have read and replied. I think all of you are truly amazing people with one unique thing in common.
From the words of Dorey from Finding Nemo "keep on swimming".
I feel humbled and a little ashamed. Now, I know that the suffering of others does not diminish my own but I've been feeling a little sorry for myself recently. More aches and pains, feeling poorly and wiped out and grieving for the life I had. I don't normally indulge in self-pity and think it's a waste of time and energy but, hey, I had a weak moment. Two things have altered the case. On holiday a lady with very obviously disfigured joints offered to help me off the minibus and your post. It's time to haul myself up by the bootstraps again so, thank you for your thought-provoking post. I just wish you hadn't had so many troubles to write about. Hugs
It's quite helpful to come to these posts and read that i am not alone. All my life, i have felt alone. I had a huge break through with counseling as to "why," various events from childhood to adulthood but I won't bore you with that. Those who think they know me would never dream that was the case because I'm in the limelight by teaching and I was an entertainer in front of tens of thousands of people. When the ugly monster called "RA" reared it's head, well, I sank pretty deep. It took the average doctors over 5 years to figure out what I had. One doctor said I had "cronic pain disorder;" you have pain but we don't know why. He was a rheumatologist at Kaiser. Not having a name for what I was going through made me feel even more alone and had me thinking I must be crazy.
Fast forward to a a couple of years ago, I meet a lead professor at USC Medical attending my church. He asked me to come see him, no charge. He spent two hours with me, examining me. A week later he give my monster a name plus introduced me to a few of his pals. Besides RA, I have Colegeans Disease; Ileopsoas Tendinitis; which makes it difficult to walk, stand or sit for a long period of time, causes balance issues; battle Frozen Shoulder but that's getting better; Bradycardia; deal with tremors and cramping of hands, legs and feet; plus I have sleep deprivation, sleeping 3-5 hours a night.
Doc wants me on permanent disability and we've started that process but I don't see how I could survive on what they give. Yet, I physically can't continue teaching in this condition, some days I barely can lift a coffee mug. I'm self-employed and am being forced to semi-retire but I don't want to... Only making about a fifth of what I was making. Unsure of what I can depend on for income, my wife and I temporarily moved in with our daughter while we figure it all out. I'm 60, two years away from drawing retirement funds. To add "injury" to, well, INJURY, I fell and broke a couple of ribs because of my balance issue. I've gone through my weeping moments, as well. I try to be positive out in public but I appear ill and in pain. It sucks. I have an incredible wife who is by my side, sharing the burden. I am so grateful to have someone I don't feel alone with, who gets it. And, now I have these posts and all of you.
I really feel you, truly. Although I have many health issues. I feel like I am lucky in a way, as I had my condition from such a very young age. I have never really known my life without it. So have learned to live almost in harmony. As people are struck down later in life I believe it comes as a huge shock and probably more debilitating. However, the common denominator is that we all strive to overcome and lead a normal a life as we can despite what is being thrown at us.
Don't give up. Try and be as healthy as you can (says she, sitting with a glass of red wine, even though I know my body hates it). Anything in moderation is fine. I don't know what the answer is. But talking about how you feel and letting go of the anger really helps. You are someone that has been dealt a handful of crappy cards. But you are so very lucky to have support and love from your wife, which is truly invaluable. Stay strong.
Dear Loura, you are to be admired and I ditto all you say. My consultant said to me my positive attitude has helped with controlling my RA and my journey is nothing like yours. You are an inspiration so when I step out of this bed with the niggly pain I shall certainly think of your story. Thank you for sharing and wishing you nothing but the best life has to offer. Staying strong - Hessie
Oh Hessie what beautiful words. I don't deem myself an inspiration. But only as someone who has common ground with many people using this forum who understand.
Have a lovely day and hope that the weather wherever you are isn't causing you too many issues. Especially the damp weather. I do find that it really affects my joints.
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