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.

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.

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.

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

Bram.

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

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

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.

Being judged is one of the biggest problems we come across. I feel like I have to crawl on my hands and knees for people to believe me. (My rsd is in my right foot and entire leg) My own doctor judges me. It's bullsh** when people do that. When it rains...it pours! I'm sorry your in a painful flare and you're child is sick and all this stuff is happening at the worst time. I hope you and your family is better soon!!

Heather

I am sorry you are going through such a rough time Allanira. I understand about the judgement, like many of us do. I hate that at 46, I had to stop working because of this wonderful disease One good thing about that is the judgement passed down on me from my bosses is over. Oh, they are probably saying things about me now since my STD and LTD appeals were finally approved, but at least I am not there to hear or see it. I have had this for 23 years and some things never change, no matter what I say or do.

I hope this current flare calms down soon and I hope you can get some sleep tonight.

Nanc

My flares usually last about a week so it should end soon. I finally got the meds situation figured out and I am back on the Lyrica. I am also on a neurological supplement, and a ketamine compound cream. The cream makes my skin feel weird as in not quite dry but not lotiony either. I am hoping that by the end of next week I will have all the meds consentrated enough in my bloodstream that they will start working. Ok I think my lo is asleep (I really really hope so). My oldest is in bed and I really want to be also.