Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Warning!!! Whining going on in here!!!

deleted_user
deleted_user
Yes, I am going to whine, rant, snivel, and throw a small tantrum. You have been warned!!!!!

I will start with a question, yes asking for input here. Why is it that family and/or friends think that there is a magical pill, treatment, gadget, etc. that will make RA miraculously "go away"? I am sure this has been asked before, but please refresh my memory and humor me.

Now for the needed info. I went to my Rheumy last week. First time I have been able to see her in 4 months. I was so glad to see her and vice-versa. I actually had a 30 minute visit!!! She and I talked about many issues such as meds, mobility, power chair , etc. My hubby and daughter were with me which was great.

Now for the whine, cheese please!!! When we got home, Hubby says that the Rheumy ordering PT and OT is just great. Now I will regain all my strength and be as good as new!!!!! WTH??? He is right back to RA and my other "friends" being just a temporary bump in the road of life. Time to do some exercise and get back on track. I guess that is why my Rheumy also wrote out orders for a new power chair instead of the used up, on its last legs chair that I have now. I am wondering where my husband has been the last 32 months?? He has been to several doctor appointments with me, read the reports, been with me during functional capacity tests, agrees with filing SSDI. I don,t get where he is coming from anymore. The next day he takes me shopping. Tells me he will drop me at the door and I can walk on in and find a store scooter!! Well I did this at 2 different stops. At the third stop I told him he would have to go get a scooter and bring it out to me. He said, you can't walk into the store???? Are you really in "that: much pain???? UGGGGGGHHHHHH.

When do people ever get it?? Am I just wishful thinking here?? Is all of this pain, arthritis, etc just in my head as some think???

OK, I am done with my rant for now. Please resume your regular programming here. Sorry for the interruption.

Jamie
wrenchead
wrenchead
I know I have said it before but it was a while back so I will say it again. In order to get people to respond so stupidly or ask dumbass questions I explain to them that RA is a disease. This disease is destructive. My body is eating itself, my immune system see's my body as the enemy and it is trying to get rid of it. That pretty much takes care of the dumbass stuff. It seems to take the discussion to a higher level.
bigiblue
bigiblue
I am with Bistro on this one. When they get RA then they get it. My Friend told me just to tuff it out that she has Arthritis too, but she's a tuff cookie and can handle the pain. Well good for her.
JillyT
JillyT
Unfortunately it may be true that for some people to get it, they really must get it. Now I don't know about you but I wouldn't wish this on anyone in the whole world. MsCowgirl may have the answer, your rheumy is just to good lookin, lol. In the meantime, pass the cheese - I like edam with my Merlot,

hugs jilly
deleted_user
deleted_user
Oh Lordy, I am just so grateful for everyone here. I am so glad that all of you can see what I am not seeing in my Hubby. I did not even realize that he is being as supportive as he knows how at this point and just wants me to get better just I like I do!!!!! I thank all of you from the bottom of my heart. I have had time to own this and try to let it go. I realized that putting it in black and white and then seeing it from a different angle thanks to all of you has help me tremendously. I must admit that my Rheumy probably does look very good to the guys. OK, now I'm jealous of her!!!!! LOL. Oh yeah, I love a really good provolone wedge.

Jamie
deleted_user
deleted_user
Lately I've been advised several times to "just drink cherry juice every day". We live in an instant gratification society..everyone wants the quick fix. I can't tell you how many patients I see with back surgery, joint replacements, that think that the surgery alone will fix everything and they don't want to put the time in to do the rehab and get the best possible result from their surgery. They think that they will just have surgery and that is the cure! Back to your question, I try to explain nicely that RA is an auto-inflammatory process and that a little cherry juice can't possibly ward off the fact that my body hates itself....and I get blank looks and stares. They won't get it, as Bistro said, until they get it. So for the most part now I just smile and say "Yes, I've heard that" and for the most part keep my mouth shut. If they have RA, they will get it, if not, well, they probably won't ...and I probably don't get what it is like to live with diabetes, etc...so I just smile and move on...
Norrie08
Norrie08
I totally understand how you feel. I also have lots of achiness and pain during the night and in the mornings so I do know what you are experiencing.p

But unless you experience the extreme achiness of this disease of ours (lucky us!) you have no idea what it is like to be in pain on a daily basis.

Just as no man can fully understand the pain of child birth, or any other surgery or painful experience, another person's understanding is limited. That is why there are message boards and support groups so that those of us who experience all these different things can share our thoughts and feelings with only those people that truly understand what we are going through. I think unfortunately, it is a sad fact of life.

I hope your husband will try to understand what you are going through and try to show more sympathy for your limitations.

My son wants me to go with him and his girlfriend and her family to the Bahamas in July and I told him thank you for the trip, but I cannot count on my body to feel good and I would not feel comfortable going outside my element with this uncertainty. He is only 33 so he has no idea about aches and pains).

Good Luck! I hope you feel better soon.

Norrie from NJ
deleted_user
deleted_user
What I love most is that everybody else can find the positive things in your hubby just by what you write. Sometimes it's hard to see it when you live with it everyday.

I have a friend that tells me to "respond" not to "react" to the stupid comments made by others concerning RA. She means for me to shut up and think before I talk because I tend to tell people exactly what I think

So, in response tell your hubby yes you are in that much pain and you appreciate how he has been dropping you off but now he needs to go one step further and bring you the scooter

In react mode "if i didn't would i ask you to get the scooter?" now just go get it and it would be said as I pinched him and asked "did that hurt"

as for interrupting the regular program thats what we are all here for please continue to interrupt
deleted_user
deleted_user
Ravensgma, you sound just like me. I too tend to put my mouth in gear before my brain!!!!! Maybe someday when I am 180 I will grow out of that, NOT!!!!!LOL. Thank YOU for helping me stop and think of a better way to respond.
deleted_user
deleted_user
You can rant all you want! I can understand how frustrated you must be. I agree with the other posts that he is probably hopeful that you will be ok once the "meds kick in" and the "pt gets you up and around again". It sounds like he is good about going to appointments with you and means well. I think people who don't have these chronic conditions "get it." I think back to times when someone would tell me about something they were dealing with and I would offer a suggestion - they probably felt frustrated at my willingness to offer advice. Now I know better than to do that! I'm sure he is hurting for you as well and is probably trying to keep an optimistic outlook for you. Take care of yourself!