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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deleted_user 06/10/2009

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

purplekitty 06/10/2009

How frustrating that must be. On the up side, though, it sounds like he wants so much to believe you will get better, which, although it is a pain in your neck, means that he cares and wants you to be better. His denial means he's hurting for you (at least that's how I am seeing it here from a distance.) Hugs to you both.

Caspiana 06/10/2009

I am going with Purplekitty on this one. I think he probably is hoping that you will somehow recover. I can well understand how frustrating this must be for you. Have you tried to talk to him about it? He probably does get it but is hoping it's not as bad as it really is. Hang in there. *hugs*

deleted_user 06/10/2009

I know for a fact I am still in denial of the fact that I have RA and still feel like when I can't do something it's in my head and I can't really feel this terrible. My husband so far has been very understanding and empithetic towards me. I am worried about the future though. If I do become increasingly imobile, how will my family react to me then. I am sorry that you're feeling so fustrated. I am so very happy I found this site. I am glad we have somewhere we can go to rant and whine and know that people out there can relate. I'll listen to you whine only if when I do you'll do the same okay:) I hope you are feeling better.

pearl240 06/10/2009

Jamie, I think that most of us here share your frustration, but I will try to offer my two cents, and hopefully I will take my own advice. As for the magical pill comment; my mother keeps asking me if Im taking enough vitamins and my sister asked me the same thing. Plus she tells me that she knows how I feel because she has arthritis on her knee and her back (I cant even attempt to answer her with that remark). Lets try to ignore the ignorant remarks and believe that they are making them because 1) they are trying to give us hope and a little push because they think that its what we need to hear or 2) they dont get it, and they will never get it, so we just have to focus all of our energy on ourselves. Remember that every time that we get upset, it hurts us..so do it for you/and Ill do it for me too. Since Ive been diagnosed my husband has made a couple of remarks to me like it just seems like youve gotten worse lately which I work really to hard to interpret into now that we know what you have were more aware of all of the symptoms and I will try hard to not turn that around into an attack on me looking for attention.
Best to you,
Zeyda

deleted_user 06/10/2009

I understand your frustration. Sounds like your husband really cares and is just hoping for the best. It's easy to get aggravated with him...cuz, well, he's a man! lol. You can't possibly expect him to truly understand what you are going through??!! Again, he's a man. I am also married, with 2 kids. And my husband and I have gone through some ups and downs. I know he cares, but sometimes I think he truly forgets I have this disease. Or maybe it's cuz I haven't accepted it fully and try and act normal as much as I can. I have realized it must be hard for a spouse to deal with what their significant other is going through. Not that i am making excuses....but again-he's a man!! I hope your day goes better. Erica

deleted_user 06/10/2009

Isn't it great to have someone let you out at the door of stores, offices, etc? I often wonder what I'd do on my own.

Through the years I have also been told to take this supplement or diet, or "work it off". But on the other hand, I really don't know what my friends are going through with cancer or heart problems. I recently asked a dear friend with diabetes and getting over heart surgery if she wanted a brownie for dessert. My excuse, I didn't want to eat one in front of her..and I wanted one. (can't blame all my weight gain on meds)

I know I have had to make a lot of adjustments and accept many changes. My husband and family also have to work through these changes in their own mind.

Bistro 06/10/2009

By the 3rd time, it seems common sense would have dictated that he get it for you, especially knowing everything that he knows about your condition. He sounds more interested and involved than some partners, and I agree with everyone here that he does seem to really care. But yeah, you suffered twice, how about this time you help me out here?

If you eat 6 chocolate chip cookies every day, and click your heals together three times, your RA will dissapear!

Kendall Jackson's 2006 Vintner's Reserve Cabernet Sauvignon, with a nice chunk of Smoked Gouda for me, please! ;-)

My answer to your question, "When do people get it?", is WHEN PEOPLE GET IT. When they get RA, they will understand RA. That is the conclusion I've come to.

reneelouise1 06/10/2009

I can understand how frustrating that is, but so many people have a little arthritis and will comment on and then go on their way. You know that saying I know what you are going through. . .no one knows what someone is going through unless you are there or been there and even then their situation good be totally different depending on family, finances, support, etc. that's why support groups can be so helpful. I think sometimes family members mean well, they just want things to be normal, and I think they have they own way of going through the denial process.

Renee

deleted_user 06/10/2009

(( big hug)) how frustrating it must be. I am certain that him "requiring" you to be independent is his own denial of how sick you are, and "encouraging you" to stretch your limits (I have some friends who do this) - only they don't realize it comes across as indifference to the disease and ignorance to all we go through. I'm glad you came and ranted for support - and I agree with Bistro - people get it when they GET it.

I have friends who keep recommending things - and I'm trying very hard to explain and be patient, but mostly I get irritated by it all - I really WANT to be the person who can just take into account that it is coming from a place of love and feel it that way, but I'm just not there yet.

Have a good day, Jamie

deleted_user 06/10/2009

UGGGGHHHHH...describes it perfectly Jamie and good on you for ranting with those of us who really do understand that scenario.

Like, "Hello, where exactly were you the 30 minutes those discussions were happening"? Seriously though, I think those of us who are well see health problems as sick + treatment = better. Thats it! And like others say, your dearly beloved is no doubt really hopeful that will be reality for you, but sadly he hasn't grapsed the phrase "chronic, painful condition".

In conversation with your daughter too, keep referring back to the consultation, what was said and how this translates to reality for you.

If all else fails, get an uglier rheumy; this one is obviously too good looking for your husband to really pay attention, lol.

Onwards and Upwards!!!!!!!

deleted_user 06/10/2009

Sometimes you could just bloody scream, couldn't you!! Big hug, Jennie

deleted_user 06/10/2009

You may interrupt our regular programming (no appology needed) anytime Jamie. Prayers and hugs to you, Cindy

deleted_user 06/10/2009

I'm with Cowgirl, get an uglier Rheumy!!

deleted_user 06/10/2009

oh, Jamie, you have my total and complete sympathy! i believe it's wishful thinking on our families' parts--somewhere out there is a magic pill that will make us all better! but they don't understand the reality. maybe someday...

oh, i just happen to have a nice big chunk of montery jack in the fridge with your name on it! :)
hugs,
brat

deleted_user 06/10/2009

Jamie I think he really and truly cares and does want the best for you. He just isn't doing a very good job right now showing it. Guys can be so Duh acting sometime. lol My hubby is the same way. We may be unloading the car and he will just walk away and leave a huge sack of dog food for me to carry in the house. Ugh! I don't complain about him too much though because he is very understanding and encouraging. Hugs~~

Linda

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