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RAlady69 posted:
Has anyone else experienced a family that just refuses to accept your diagnosis? I mean my extended family is constantly questioning my diagnosis even though I have seen 2 different RA Docs. It is beyond frustrating. I was diagnosed about 6 years ago & had really great success with Enbral until o got an infection that ended up in a tonsillectomy and the discontinuation of the meds. It scared me so badly I never went back on them until I absolutely couldn't deal with the pain anymore. I am now on MTX and the monthly dose of Cimzia. Hoping it works. The MTX made me sick as a dog but we just switched to injection. Hoping for a better out come. Any way just needing to vent.
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marzipana responded:
How frustrating! When you say extended family, do you mean people not within your immediate family circle? If those closest to you understand and accept what you have to deal with, that is a good thing! I personally try to avoid people (family or not) who are not supportive and understanding, for whatever reason. It's kind of obnoxious (in my opinion) for people to question a medical diagnosis---when did they get their medical degrees?!? It's their problem, not yours. For your own sake, you should cultivate relationships with people who care about you and are empathetic---and sometimes those people aren't necessarily family.

That's my two cents, anyway. Good luck with the new meds. I'm not a doctor, but I would hope that you are being carefully monitored for white blood cell counts to make sure that you are not vulnerable to more infections.
 
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MyVoice responded:
While it is nice to have support from family and friends, sometimes they also be just another issue to deal with. Oh poor you.. or, No! you can't do that or this or whatever. So extremes in any direction are not good.

Personally, I don't mention my RA often. I've had it for 25 years and the last couple of months have been the worst in years. I've had to resort to a cane, missed work and other things. If I don't feel like I can or want to do something, I just don't do it. If anyone asks, I just say I don't feel good or Sorry, can't make it. The why is really none of their business. And I don't need lectures on the latest snake oil solution that will cure my RA.

RA is just part of what your particular journey has to deal with. It's not you and you are not RA. Don't lie, no one needs to zap their limited energy by juggline lies. But don't offer RA up as either an excuse or a topic of discussion.

Because, bottom line, you don't NEED extended family support in order to address your RA. You need a good friend and confidant, ideally a spouse, and you need a good doctor that you can tell anything and trust to have your best interests at heart. The rest is just noise.
 
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juliealtenau responded:
That is certainly frustrating. My 11 year old son has been recently diagnosed and his father (a doctor and my ex) keeps telling him there is nothing wrong with him. He won't do PT with him or make sure he takes his meds during visitation. Luckily, he is down to 3 overnights per month. Does anyone have any suggestions on how to deal with a non-compliant and non-accepting ex ?
 
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sickandtiredofbeingsick responded:
My husband is aware of my hands looking like a "claw' but he still expects me to do all the household chores-denial. When I am in such bad pain and he sees that I am still in bed when he returns from work, he just says 'not feeling well huh?' and goes about his business. He ignores the fact that I cannot lift even the dinner plates to set the table. My good friends see it, but everyone else in my life is tired of me being so sickly.
As I have, diabetes, frozen shoulder syndrome, serious coronary artery disease and gastric issues. I wouldn't believe me either if I was someone else. It seems more like a soap opera medical drama than reality. I wish it was just a soap opera. I live in constant agony with all the medication and physical restraints that I must endure alone.

I have to 'pretend' when my daughter drops her children off at my house. I have to be the "well grandma.'
My kids have taken a deaf ear and my husband says my illnesses 'turns him off.'
I am left not talking about anything medical with any family members and coping on my own. I cannot find a RA support group in my area either.
I am only 59 and I feel like 100.
So I fake it and smile and endure.
 
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sickandtiredofbeingsick replied to MyVoice's response:
I wish I had a good doctor who listened, but he is just another
" assembly line doctor' as most are these days. Fifteen minutes or less and I am shown the door.

I feel as if I am on my own and I do not discuss it unless I have to. I have tried, but quickly learned my lesson- to keep my aches to myself.
 
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mybuddyrobin replied to sickandtiredofbeingsick's response:
My (probably ex) fiance just doesn't get it. I cannot explain the agony of moving. I have talked to multiple doctors about the fract I am in bed 65% of the day...yet they have nothing for me. and now my fiance is breaking up with me because he is sick of my laziness. I miss social events and important meetings because of this horrible situation. I have so many problems with my memory as well...yet I cannot seem to communicate how I feel. Just get judgements all around me. Does anyone else have this problem with insane fatigue? I am beginning to think I am crazy... or lazy... or in some way just wrong. It doesn't help me to get up. doesn't help me to move... just makes me want to go ever deeper into isolation... so I can stop hearing the judgements.

Please someone help me. I cannot go on like this much longer.
 
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Anon_227582 responded:
I did have some problems with my mother at first. Because she had done some of her training to be an occupational therapist on a RA ward back in the 50's she felt she knew what it was like. But some of the comments she made about patients being "difficult" when they were coming off their aspirin therapy made me realize she didn't have a clue. It was very frustrating and I finally wrote to her about what having severe flaring in multiple joints is like (and I wrote it in the first person). She changed from that day on and admitted that she had not realized just how painful RA can be.

I recently read an article linked from Kelly over at RA Warrior, printed in 'The Rheumatologist' and I thought it would be a good thing for frustrating family members to read. Here's the link, hope it helps you!
http://www.the-rheumatologist.org/details/article/1311755/An_Identity_Crisis_for_RA.html
 
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triedofbeingsick replied to sickandtiredofbeingsick's response:
am only 30 and i feel like 70 ...what can we do ???we are chosen ones for this misery........i feel so helpless and frustrated ......when evry one of my age are having fun in their life ,i am struggling to live ...and the fact that noone understands u and ur misery ,not even ur spouse makes thinks more frustrating......my father ,brother do not want to talk abt it ....acc to them ,its my problem i have to deal with it.....my mother used to understand it but she is no more ...i feel so lonely ......even my wife do not understand all this ........i am crying and writing this...i feel only death can free us from this pain and shame.....till then i also fake it and smile .....


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