I found out on Friday that I've got an anti-inflammatory version of arthritis. My rheumy prescribed plaquenil so she's not real concerned with figuring out whether it's rheumatoid arthritis, lupus, or one of the other inflammatories.
I've been tearing ligaments and tendons for years so I've been informing my friends who ask after my injuries that we now know why. I've also told them that this is WALLOW WEEK. I don't want to hear about the bright side, the silver lining or "at least..." That can all happen later. I get at LEAST one week to grieve.
Most people have found a serious or a hilarious way to respect this but there's one friend I just want to smack. She just kept going on and on about how lucky I was to ..blahblah.. or how she's sooooo familiar with it because it runs in her family or how lucky I am for some other stupid reason. It didn't matter how many times I told her I don't want to hear it right now and that she DIDN"T know what it was like, she just kept saying the things I'd already asked her to stop saying.
Now I just don't want to talk to her AT ALL. Who cares how easy it is for her to hear? I'm angry and processing and I just don't think one week is too much to ask.
I honestly don't feel like bothering with her anymore.
I'm sorry to hear about your situation. First off I suggest you find a new rhuematologist or geneticist to find out exactly what the problem is or what type of arthritis you have so it can be dealth with accordingly. There are over 100 types of arthritis and not all are treated the same. I'm not familiar with any that causes ligaments to tear or stretch, but am aware of several collagen conditions that do. Either way, see a good doctor willing to run the tests you need to find answers and treat you right.
As for your friends, it's hard for anyone who doesn't suffer from a chronic condition the amount of pain we go through and how sometimes our lives can change. Until it happens to them it's hard for someone to comprehend just what you are feeling.
Her attempt at moral support because she has a family member or members with similiar problems is that, an attempt. give her the benefit of the doubt. It is hard to know what to say when someone finds out they have a lifelong condition. Think of it this way, what do you say when someone you know has a family member die? The usual, I'm sorry, etc etc, it's because we as humans don't know what to say and sometimes not sure how to relate or can feel helpless in trying to show support and be there for that person. Some folks just are not that good at it, and some folks, well they just don't care. It's up to you to decide the type of person she is.
Giving yourself time to "greave" is a good idea, self obsessing is not. It is normal to have a period of being upset and even once you pass that it's still ok now and again to get upset because you aren't "normal" or can't do what others do.
I had a former father in law who would sometimes get sick and would constantly whine about it for attention. I'm not saying this is your case, just saying folks of that nature exist and for me, they drive me nuts.
The best thing for you to do is find the exact answer if possible as to what's wrong, this will help bring closure in one sense and help you move on. Sometimes it takes counseling to learn to accept that what we could do even just a year ago we can't today.
I wish you luck.
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No matter how great your illness or pain, there's always someone else who may be worse off.
I know what you mean. It is frustrating and surprising at the different reactions you get from friends and family. My family ignores it and doesn't talk about it. Like it's going to go away if they don't recognize it. My father in law says it's all in my head. I've been diagnosed with lupus and scleroderma overlap, and they don't understand why the doctor would prescribe pain medicine. They don't understand why my house isn't spic and span. I have two dogs, two horses, a cat, fish, chickens, ducks and five acres to mow and trim and deweed and three kids to take care of! They expect more, more, more. I am getting sicker and they don't offer to help!
It is frustrating, but nobody is going to understand the way you feel. I don't really think anybody even really cares anyway...No one will take care of you but you, and the reactions of people are so weird.
We had a family get together and the discussion of "who would die next" came up. Everyone looked at me in the room ( I am the youngest one) and asked -so, how are you feeling? That was a surreal moment for me!
Hang in there and be strong, and you'll see you will make it and just have to deal with other people and their reactions. They don't mean any harm, they just don't understand - and really, there is no perfect reaction to receive from them anyway. After a while you get sick of the sympathy reaction and the positive reaction. Hang in there and be strong!
I'm a little late responding to this, but I can SO relate. My secretary has the completely fake, ever so happy, everything is wonderful crap and it drives me nuts most days. Of course I caughter her taking several pills the other day which she referred to as her "happy pills" so I'm guessing that's how she manages to be on such a high all the time. She told me I was moody. LOL. I'd rather be moody and trying to have a grip on life naturally than popping pills constantly to be so happy. Anyway, I totally relate to this post.
BTW - if you don't mind me asking, how has the Plaquenil worked for you?
Perky friends are hard to deal with when you are mourning the decline of your health. I also have some "rheumatic condition" that has not been pinpointed yet my my rheumatologist. I had one before her that slapped the Lupus dx on me. Then another one thought I had primary Sjorgrens. My current doctor does not want to make the same mistake by jumping to conclusions. Instead, I am being treated with 400 mg. of Plaquenil and a new NSAID, because the last one did not work. After a week, this one is not helping with the pain either.
However, we have to keep plugging away, even when we look "normal" on the outside to other people. It is the worst when you have family members that don't understand. When you are not so angry, try talking to your friend again and explain to her what you need from her right now - Even if it is only to listen. If she still won't listen then maybe she cannot be your friend right now.
Keep us posted, and remember that the plaquenil can take up to 4 months to kick in, but once it does, it helps tremendously!
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