Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group Interesting story of RA that's very similar to min

Thought other RAers might be interested in this link:

http://rawarrior.com/onset-of-rheumatoid-arthritis-stories/my-onset-of-rheumatoid-arthritis/#c1

The especially interesting part, to me, is how close her story is to mine.

I also had sore feet at the beginning but it was only after the diagnosis that I realized that may have been the beginning. Then my shoulders kicked in, like the writer, after an injury. Then significant stress triggered the addition of my hips and knees. My hands and wrists started up very late in the process. I found this quite reassuring as I've always wondered about my non-classic start-up for RA.

Dear Lord, Wendy, what a frightful story and an even worse story of medical ineptitude and medical neglect - in the realms of malpractice, certainly a total disgrace to the medical profession. One shakes one's head. But also, why did this poor lass put up with it for soooo long? She just took all their arrogance and nonsense without a murmur, as though they were veritable gods or summat. I just hope that she went back to each and every one of those &^%$*£ds and gave em hell with a full note of her correct DX (specifically in order for the same scenario to NOT happen to another unfortunate patient. GGGRRRrrrr.) Yes, and I would ALSO put in a detailed report to the general medical council. Those doctors needed/need to retake their medical exams. All her symptoms screamed RA and no referrel to a rheumy until she saw the inept twit, whose treatment of her was *disgraceful - but at least and eventually she got on the right course by dint of the professionalism of her podiatrist. Strewth.

Am so upset by this whole story. Compounded by the fact that this poor woman has NOT taken those idiots to task. Apologies, but this has really got to me hon. Think it needs reporting to the newspapers...

Thanks for posting.

wendy,

thanks for that.

have you shared your story there, i think you should if you haven't.

these atypical stories hold out so much hope for those of us with atypical stories.

though the details of her story are completely different than my details, the theme of it feels so oddly familiar, all the weird symptoms, all the doctors passing the buck, a few kindly ones, but no one really knowing, thankfully i haven't been as bad as the woman in that story, but still. and good to read some of the odd symptoms, makes me feel even more convinced that my two very different from one another weird rashes are probably part of my disease, whatever it is. but i didn't start this til i was 35, so maybe we won't know til i'm 65?

molly, i hear you, but its amazing how really strong people can get so worn down by poor treatment. i was strong and tough and went from one doctor to the next in virginia, but you get so tired of "fighting" everybody, so you stop fighting. not that you give up, but "fighting" takes up so much energy, and its such negative energy, and if you're a positive person, you just don't want to go through life this way. like why do i stay with my current rheumy? because he's infinitely better than the three rheumies i saw. i do feel its almost like saying, "well, i stay with my boyfriend because he doesn't physically abuse me like the first few did." funny, i'd never put up with that, but its so easy to get sucked into believing maybe they're right. thankfully i have other doctors that keep urging me to find answers, which they all believe are rheumatological. and friends who urge me on. and a little voice inside me too. but they sure do wear you out, especially when you're trying to work and live your life. but really i can't complain that much because i'm not usually that bad and not usually that disfunctional, i keep thinking i could always be worse. but so many doctors, all so different, like the woman said in the story, like night and day. my endocrinologist, the new surgeon that may take my gallbladder, brilliant! the GP (who is retiring so i will be getting a new one by default) and the rheumy treating me like there's not much wrong with me. does make one question ones condition, but only because after a while, you just get worn out.

wow! Thank you, Wendy, for sharing the link with us. I read the entire story and cried. I recognized some of her fears in myself too. It is so hard to keep smiling some days when pain is dulling your mind. There are some aspects of my scoliosis which do not fit the mould for it. Aching joints. Skin which hurts to touch. Many 'little' things which are somehow part of a larger picture which hasn't revealed itself yet. I hesitate to see doctors for I see a perceived weakness in myself by asking for help. Silly as it sounds. I keep burying the pain and illness I feel telling myself 'next year will be better' even though next year I am even worse then the previous year.

Wendy, has anyone told you lately how very special you are?

Consider yourself told.

Warm hugs,

Thanks, Kat.

Wow, some of this is similar to mine as well.

I have spent YEARS being mad at my SHOES, and thus always in search of the perfect pair...which I never found.

My experience with the rheumatologist is that he tends to focus on my pathology rather than my personality.

Like after I say I don't want to take DMARDS, he says "Well, you'll have to try the DMARDS", and I have to remind him again.

I have a really good D.O. who listens to all the research I bring in and lets me try absolutely any med and/or treatment I want. She is also really good about referring me to specialists as need be.

I don't really know what I'm trying to say, just that I guess I find it important to have a Doc who sees me as a whole person and not just a bundle of symptoms/diseases.

Peace

I SO agree Kat, so consider yourself told again..lol

You are very kind, Lisa.

Wendy,
I am not very kind, but I do consider myself a good judge of character, you my friend are a rich blessing. I continue to pray for relief and less pain in your life.
Any hobbies going on now?
How are all the children?

You are a rich blessing, yourself, Lon. Love to read your antics.

I'm beading again - I'm sure Bridget knows what that feels like. I'm making a few pieces of jewellery for the silent auction my non-profit organization puts on each year to raise funds to meet emergency needs for the youth we work with. We've covered emergency dental treatments, work boots, travel costs and so on without which these kids will have an impossible time trying to get their lives turned around.

Anyway, it was a great excuse to dig out my beads again!

My five year old granddaughter just left this afternoon after staying for four days. Unfortunately, a mosquito bit her eyelid yesterday and her eye swelled up so it was completely closed. Looked like she'd been in a boxing match!! Poor little thing - she hardly made a fuss but it was still swollen closed today when her mum came to pick her up!

Wendy,
I am glad that you are helping out these kids who get shoved aside and often abused by parents and adults. We are working with convicted felons, and a few young parents. It seems like it is an up hill battle.
Our son (adopted) has had an addictive personality since birth. I am at a loss to understand. I have learned so much from him; about self control and those who seem to be affected by what their parents did.
We went to the high-school world Rodeo last night! These young people are quite a good example of determination. One little guy, was sitting there eating his dinner, maybe weighed 115#, and he had his lariat coiled over his shoulder like in the old western movies....
I loved the women's goat tying contest!!!!
Wendy, I hoep you feel good enough to enjoy the summer. I hope your little type's eye is better by now!!