[Allanira]

I am so tired of being judged. I get judged because I don't "look" disabled even though I use a cane. I get judged because I call the Dr's office and ask about my meds that he prescribed and my pharmacy will not fill without a medical nessesity form. I get jugded because I don't do anything around my house except make sure my boys and 4 legged brats have food and drink when I'm in a flare. You would think after 10 years of this stupid disorder people would realize hey she really does hurt as bad as she says. Guess what nope not in the least. I get up 4 times at night with a 1 month lld, have a 2 1/2 yr old thats sick, plus I'm in a flare. The Dr gave m ed a 1 wk sample pack of lyrica 75 mg and I'm out of that. I had to track down, and find out why my medical nessesity form wasn't faxed to my pharmacy so I could get my prescription. Plus my house is a complete disaster zone. I found out the Dr's office was faxing it to the wrong number. Got that fixed, got a couple dishes washed, my sinks are still over flowing onto the counter. My poor baby is sick with a nasty cold that will not let go, and my youngest baby has 2 modes, sleeping and screaming at me for not having his food ready when he woke up. That happens within .2 seconds of him waking up. I really pray when my husband gets here tonight he lets me get 1 soid nights sleep which I haven't had in about 5 months. Just 1 night. Okk off this rant. I am done for a couple months.

[Brambledog]

Yikes, that sounds like a nightmare. You poor girl. Hang in there, and talk to the people around you about how you're feeling with all this going on and a chronic disease that is the most painful condition to have. You will end up more ill yourself if this goes on too long - especially the sleep thing.

It's so hard not to feel judged. I was feeling it last night when I had to ask for my daughter to do something for me, and there was this little hesitation, and I could tell she was thinking I ought to just do it myself. They have no idea how much pain we're in...and sometimes you just have to tell them. Again. It sucks.

Try not to feel guilty or responsible for the situation you're in. Sounds like you're doing everyone you can, and then some. You didn't ask for this to happen to you, and you're certainly not enjoying yourself much. Small babies are such hard work, I'm full of admiration for what you are coping with right now. It will get easier. You have to believe that!

Take care of yourself and make sure you are getting the food and meds you need. The issues with your meds etc are ridiculous, just keep battling away at them like you are. Maybe ask your doc if he would like to try walking that mile in your shoes....and then judge.

Bram.

[Allanira]

I know if I can just get a few hours steady sleep I will be fine. It's the sleep deprivation thats getting me. Also starting a new med is always hard but when your Dr is a couple hrs away makes it even harder.

[Brambledog]

Very true. Nothing is ever quite so bad if you can get enough sleep...

Bram.

[Russell]

I had to get used to people staring at me in a wheelchair...
(Just saying!)

[Allanira]

Maybe I can get a long nap tomorrow and let the hubby deal with sick/screaming goobers. No that would be torture lol

[RSD ME]

Hi Allanira, I think one of the most frustrating things next to being in constant excruciating and debilitating pain is having people think you're okay because you "look" fine. My NP at my PM drs office told me last week that she has seen alot of rsd patients that were worse off than me. I wish I said something because I was so appalled by her insensitive and inaccurate comment, but was too shocked at the time to speak. I will tell my PM dr next month when I see him for my med check. People need to understand that just because we "look" fine, it does not mean we "feel" fine. In fact, we don't feel fine. We have more pain with rsd than just about any other chronic illness. I am trying to hand out pamphlets on rsd (from rsd hope) to try to educate people on this disease because so many have never even heard of this condition. I hadn't either until I got it. Unfortunately it seems to me that alot of my DRS and NP get offended when I ask them if they have ever heard of rsd. They don't like to admit that they don't know everything and then pretend that they do. If they weren't so ignorant and egotistical about what they do and don't know, then maybe they would have a cure for rsd by now. I tried handing a paper to my NP from rsd hope regarding the new drug that may help rsd patients if the FDA approves it. The NP threw it back at me without even reading it and said she never heard of it. I find that hard to believe being that they link up with RSD websites. But she didn't want to take the time to read it because she was in a hurry (I'm guessing to go home being that it was the end of the day.) Hopefully this won't happen again when I try handing out pamphlets to my other DRS and NP. I intend to keep doing this until one of them finally takes the time to read it. And maybe then they will try to understand that though we "look" okay we do not "feel" okay. Knowledge is Power. Hang in there Allanira. Some people don't get it, but I do and everyone else on this forum does. I hope that you can find comfort in knowing that you're not alone. I hope you can get some rest soon too. You deserve a break after all you've been through. My prayers are always with you. Sincerely, Renee.

[Brambledog]

I feel like that with doctors sometimes too Renee....

I saw my pain doc once and she said "well, it's good to see you're looking really well. Everything must be going well. That's good isn't it." Well. I just burst into tears then and there, think she was quite shocked. When I'd got control again I told her that I had a good gameface now, and I was getting pretty good at looking 'OK'. It means nothing. I like to think it is similar to the old adage about swans....looking all serene above the water, paddling fast underneath... I said, "I'm in pain all the time. I'm exhausted. I've got kids and a job. I work hard to look half normal. Congratulate that if you want to, but don't make the mistake of thinking that because I appear ok I'm not suffering the same as usual." I was nice about it, but she's never said it again.

My GP never comments on how I look, but he has various expressions of doubt, disbelief and boredom that he uses during appointments. He doesn't know anything about CRPS, and hasn't tried to. Grr. Oh for that mile in someone else's shoes...:

Bram.

[RSD ME]

I'm so sorry you went through that Bram. Your pain dr shouldn't have said that to you and brought you to tears. I'm proud of you for standing up for yourself though. I wish I had. But I will tell my pm dr what the np said. I don't know if it will make a difference, but I'll feel better telling them how she made me feel and how wrong she was to say what she did. Just like your pain dr telling you that you're looking well. It doesn't mean you feel well. One of my brothers has stomach cancer and you couldn't tell that he has it by looking at him, but he's in constant pain from chemo and radiation treatments and surgeries. I don't say to him that since he looks okay he must feel okay. Of course not. Because I know how much pain he is in and what he's been through. So why do people think that because rsd people look okay that they feel okay? It's just wrong and I don't get it. It makes me so mad. And my gp is clueless too to rsd and hasn't bothered looking it up. (I have to give him a brochure too.) I get looks from him sometimes too of doubt, disbelief and boredom. I do like and trust him more then my other drs though. He still listens to me and tries to help me. And then every now and then I have some of my drs sqeeze my rsd hand and see how I move it (as if I am faking it and that they have to test me by doing this to make sure I'm not). And being that I'm so numb sometimes from pain pills, if I don't feel anything, it doesn't prove anything. It's so insulting! Oh well, as I've heard someone tell me once, "you can't fix stupid." And IMO some people are stupid when it comes to understanding rsd. (Not All Mind You, Just Some.)

[ecotime47]

I'm so sorry to hear you are going through this. Hang in there. I'll be praying you get some rest tonight!