My rheumy put me on short term disability so I am home for three months. I have had to explain why I am not going to be working and I would say the majority of people make comments like-
It's just arthritis
I am getting tired and depressed explaining ra especially since I am just learning about it. My ra come on strong and hard. I was hospitalized because I literally could not walk. I have been flared up since last Sept. except with some relief from prednisone. The prednisone relief comes in shorter and shorter time spans. Because this disease effects people differently, I have a hard time explaining why my ra is different from someone's aunts, mothers, etc. and why I am having such a hard time. I tell people I am on the same meds as chemotherapy but lower dose because at least then they take it a little more seriously. I figure they have to know I would not choose to take mtx unless it was serious. I hate this. Especially if I am doing well in the early afternoon, seems like my best time, and I go uptown and have to worry that people will wonder why am I not working????????? Anyone have the same frustrations????????
Wow, that is hard to take. I'm sure you'll get alot of replies on this one. I think we all get this stuff to some degree. Most people just don't "get it". You can see there eyes glaze over when you mention RA all they are hearing is ARTHRITIS and now concerned only with likening it to their, or their friend or loved one's experience. Just today I had someone say "Oh yeah, once I hurt my knee and blah blah blah" I'm sorry they hurt their knee once, but I've stopped listening now and am just nodding my head. Sometimes it might help to say something like "I have a progressive connective tissue disease" hmmmm........wonder what kind of response that would get.
Try not to worry to much about (oh my gosh I've done something to my font and I can't figure it out. I stink at the computer!) what others say or think. Like you say it's just too frustrating and takes too much energy. You know what you've gone through and that you need this time to get yourself feeling better. Don't feel guilty for doing what you need to do to take care of yourself. And if anybody gives you any problems........come tell us!! I though of you alot today!!
Good morning ALL- I am almost 50 years old and I can't believe how insecure I am feeling with this dx. I guess my self esteem has always come from how active I have been - I feel like I have to explain why I am not "myself". Truth is, this doesn't feel like me. I am already bored stiff - stiff bad joke
You know what else is frustrating........ This thing changes through out the day. In the middle of the day, many times, I feel my old self, I can run, jump, dance and play...........
In fact, I'm going to try to walk a marathon. It scares me a little because I wonder if I can really do it, but I'm sure going to try. In fact, I know I should exercise more and my rheumy encourages it so tomorrow I'm signing up for Sacramentofit, a group here who will help me train to walk the marathon in December. I can even do the half-marathon. If all goes well, I hope to walk the Portland marathon next October. My husband and I are going to New Orleans next October for our 25th wedding aniversary and we plan to walk a lot and I need to get in shape, lose some weight and just overall, try to be healthier. I start the injections soon so I'm hoping that will get me over the humps. Again, I am so thankful for this website; it has made all the difference to my emotional esteem and this disease. I no longer feel like a hypochondriac nutcase that the physicians had once convinced me that I was. Thank you everyone. May we continue to live and function to the best of our abilities and never let the disease win the war. I agree Cristene. I think being active is VERY important. That is how I plan on approaching this disease. I know there will be bad days, but I plan on mostly good days. Right now, I think I am just grieving.........
I just finished my yoga and I am going to go do some weeding. This afternoon a walk with my dogs. Not a bad plan for a day. I really should feel quite spoiled that I am off work. Cristene, Do you live in Sacramento? I am up here in Chico. We are close if you do. Good luck on your marathon!!!!!!!!!! Cristene; I think you summed it up for me...I no longer feel like a Hyprochondria nutcase since joining here. I couldn't put my finger on exactly what it was that keeps drawing my back here day aftter day...but you said it exactly. I've felt like such a hyprochondria for such a long time now. I've been lucky in the respect that I've never had a doctor that made me feel that way...ok maybe a GP early, early on...but my RD's have always insisted this was serious. But for me personally it's hard to deal with the day in day out never ending problems that arrise from this thing. Thanks Cristene for putting words with my thoughts. I don't feel like such an odd ball like I did before...I know there's lots of us here facing the same things. It makes it easier to cope with. And Roxy; dealing with the explaination question is probable going to be harder in the beginning than it will later. Later; once you've managed this thing with your Co-workers you'll get over the need to explain it. You won't feel the need to tell people anything and eventually when some one notices you limping or something you'll crack a quick joke like "Old Football injury" or something like that. (Someone else turned me on to that response and I love it!!) ...You know what else is frustrating........
This thing changes through out the day. In the middle of the day,
many times, I feel my old self, I can run, jump, dance and
play........... but then that only
confirms their doubts that it is a serious condition. Screw
it........I am going to go run, jump, dance and play this
afternoon..........just as soon as my butt stops aching, my wrist
starts moving and I can raise my arm!!!!!!!!!!
Roxy, you just summed up my day....as soon as___________ feels better, I'll ____________!
Roxy, yes I live in Antelope which is in Sacramento County, south of Roseville. It took me a long time to get a dx so personally I feel like I lived through hell. I had hypothyroidism also which took two years to get dx'd so it has all been a bundle of fun. Yes, this group makes me feel so normal and I'm surprised at the number of similarities that I have with everyone else. Not everything is the same, but there sure are a enough to make me feel comfortable again. I am close too I am in Woodland so not too far away..my rheumy is in Sacramento........ This forum is great I have learned soooo darn much and I am a nurse but this is not my area. We all learn from this forum. Wouldn't it be nice if we could get the RDs to come here and learn. It would make sense wouldn't it??????????
Sometimes it might help to say something like "I have a
progressive connective tissue disease" hmmmm........wonder what kind of
response that would get.
Pam,
I have used the "I have an auto-immune disease that causes my body to
attack my joints and causing a great deal of fatigue and pain" comment
with success. Most people just have the glazed look but at least
then I don't have to hear about "my aunt's got a touch of arthritis or
i had that once but it went away when i....{pick "cure" of the day and
insert here}"
i do think it is sad we have to resort to renaming this on our
own. mostly it boils down to being uninformed...there's over 100
types of diseases that fall under the arthritis umbrella
basically. and unfortunately some do go away on their own.
well unfortunately for those of us trying to explain to eeediots why we
can't just cure ourselves.
hugs, wayney
Ugh I totally understand, at the beginning of me getting sick my own
mom didn't believe it was "that bad" and she wouldnt help me with
simple tasks that at the time I just couldnt do. She called me lazy and
what not. BAH that was the worst. ALOT of people dont understand how
hard it is to have this disease. But honestly I stopped caring. If
someone asks, I tell them and if they dont understand I dont bother
explaining further. As long as I know I feel like crap thats it, no one
needs to understand my pain. I dont think anyone would unless they
experience it themselves. I dunno I dont think you should explain
yourself so much hun. Everyone is different, everyone handles pain and
situations in life differently. Plus your at the toughest part, the
beginning. I think thats the toughest time. You will soon learn to
accept it and just deal. But before anyone else can be supportive and
understand, you have to accept it and be supportive of yourself. And
you will :) Just takes time I suppose hehe. It look me a long time!
Either way your doing GREAT! Dont worry, people on this forum are such
a great support system because they DO understand :) Good luck! And
relax for your 3 months! :D
Roxy; the normal person doesn't understand ra, they see those STUPID COMMERCIALS
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