New Doc, Same old Shit!

So I go to a new GI doctor yesterday in hopes of finding a way to eat more and gain some weight back. 57 pounds just ain't cutting it.  I can't stand to shower or change clothes because I don't want to see my disgusting body.  It horrifies me and I can only imagine what others see. But back to the doctor. I brought my mom with me because for some reason medical people think that a wheelchair and overly skinny means I am also mentally disabled. I admit to a horrible memory but that's it. No one seems to listen to me though. The doctor asks why I'm there. I tell him I have IBS. "What's your problem?" he asks. I tell him I get diarrhea all the time. "With what?" he asks. My reply is food. He asks me why I'm on digestive enzymes. I told him my doctor put me on them to help me digest my food. He asks when I saw her last. Well it's been a long time.  Like 2007 or 2008, I haven't been sick besides the usual so I felt no need to go in and be told the same shit. Well he then gets disgusted that the doctor keeps prescribing me these enzymes without seeing me. Doesn't say word one about the Lomotil which is an opiate. So I don't know what that is all about. Immediately he wants to do a colonoscopy. I had all these tests done when the IBS was really bad and everything was normal. I can't handle the prep for these tests, I'm violently ill after and can barely make it to and from the hospital. Finally he says he'll do a flexible sigmoidoscopy with no sedation. Boo! But he says I don't have to do the prep so I agree. Very reluctantly but I'm desperate. He leaves the room, doesn't ask if anything else triggers my IBS or anything. The nurse comes in to set my appointment. She hands me the paper work and says I need to do 2 fleet enemas. Um NO! I explain the doc said I didn't. She says I have to and I tell her she can double check with him again or I won't do it. Now I am very nice, I might say I'm a bitch but that only extends to those closest to me because I know they'll still love me in the end. Lol. She checks and says I have to do it. That's when my mom really stepped in. Thank God I have her or I'd be royally fucked! She tells the nurse they don't understand, once the "flow" is started it doesn't stop. And that the doctor most definitely said I didn't have to do the prep because if I have diarrhea anyway I should be cleaned out enough. (sorry for the disgusting content) So once again the nurse checks and says "Ok he said you don't have to do it." Well no shit! Literally. I think all medical personnel (sp?) need to take a class that stresses not all patients are alike, being handicapped doesn't mean both physically and mentally for all. I wouldn't be here if it weren't for my family fighting with a lung doctor because he thought I was like other MD patients. He thought I was "end-stage". I was no where near end stage. Another lung doctor, after I got off the vent, wanted me to get a Trach. Tried to make it sound pretty by saying I'd be like Superman. Again, talking down to me like I wasn't a 35 year old woman. A WOMAN & A MOTHER, NOT A CHILD!! I told him I would not have a trach, that I could do it without. And look, 6 years later and I'm still here and haven't been to the doctor for so much as a cold. I just don't get it. You would think that doctors would know there are exceptions. I'm an oddball, in more ways than one, and always have been. Don't know what kind of MD I have because tests don't make sense for one particular kind. We've been told in the past I might have 2 kinds maybe. Cool, that makes me a hybrid. But it also makes things hard to explain, hard to treat and hard to be believed. And after almost 40 years it's really wearing on me. But I can deal with the MD. IBS-D is another story. It's ruining my life and I just want a little help. I want to be able to go out of the house without worry of being sick at some point. There's no warning anymore, I can wake up fine and hours later be sick. I can feel horrible but not get sick at all. But I have no way of knowing which way it's going to go. My friends and family say they understand and some truly do. But most don't and get upset that I've missed important things in their lives. Well I'm missing important things in my life. Like all the things I wanted to do with my son. And I have a wonderful boyfriend who in the 12 years we've been together has never been able to take me out to eat. We've never actually been on a proper date. It causes fights because he's super social so he just has to go out and I get upset. I want him here with me. It's not fair to him I know. I can't help it. People say "we have a bathroom". Well they don't stop and think that I have no muscle strength, I'm so skinny I have no ass cheeks. I don't use my wheelchair when I go to friends or family's houses. Do you know how hard it is to hold things in as you're walking with no muscle and no ass cheeks to clench? I told you this blog would be blunt. I just want some relief. I want someone to listen to ME! Not my mom. I want someone to really care that I have no life but know that I want to have a life. I'm not antisocial, I don't hate people visiting. My son is going off to college in August. I want to be able to do the family weekends and whatever else I can. There's not much left I can do with him. Not long from now he'll be starting his own family. Hopefully after college :) And then I'll be a grandma and I want to be a fun grandma. Not the one who is always sick. So I am hoping this was just a bad start with this doctor and he'll end up being my saving grace. Dear God I hope because I can't take much more. I will but I don't want to. I'll keep the MD for life, even if they found a cure tomorrow, if it meant I could get rid of the IBS-D.
So that's it for my depressing blog for now. Next time I will have something more positive. I promise. Even if it's just one sentence. HA HA HA!

The Beginning

Well, this will be short. I have been debating for a long while whether to blog or not. I used to keep a journal pretty religiously, but I seem to be only writing maybe once a year now. Mainly because it doesn't take as long for my handwriting to become illegible. So I figure I'll give this a shot. It's not like anyone will really read this anyway right?

So this will be about my life in general. A place for me to complain about my MD and other illnesses. So be warned, most likely this won't be a happy blog place. Maybe some sentimental things about my son though. I will make no apologies for my language. Anyone that knows me knows I swear like a trucker. It isn't to compensate for anything, it's just the way I've talked since I was a kid. And no, my parents didn't raise me that way. I also will not apologize for being a realist. I'm not a pessimist, although I've been called that. I like to see things as they will probably turn out. I don't like to sugar coat things and I don't immediately go for the worst either. I am not one of those lucky disabled people who think a positive attitude will save the day in the end. I tried that as a kid and it never worked. And it seems when I am happiest that's when everything falls apart. I am handicapped, crippled, disabled, screwed up and I accept that. It seems that everyone else around me has the problem accepting it :) For those that find a good attitude helps them I am happy for you, truly. Maybe someday that will work for me but not yet. I am open to any questions, nothing is off limits. I would rather someone ask me a question about my health problems than ask someone else who doesn't live with the same issues and get false answers.

So here is what I will be talking about, Muscular Dystrophy or MD, I do not have Multiple Sclerosis and please don't confuse my MD with MS. That is a pet peeve of mine. People ask what's wrong with me and I say "I have Muscular Dystrophy" and they say "Oh you have MS". NO, I HAVE MUSCULAR DYSTROPHY!! Where do you hear the "S"? But MS is more well known unless I say I am one of Jerry's Kids. Which I am proud to say. So no slamming Jerry Lewis in the comments, that's a quick way to piss me off. Anyway, I'll also talk about IBS, psoriasis, asthma and any other health issue that pops up in the future. My son, Storm, the light of my life. The one thing I did right in my life. He will always be a positive part of my blogs. I am a proud mom, I've made lots of mistakes, have tons of regrets. But everyday my son says he loves me and hears it from me. And since he is 19, I think that's pretty good. We've had a rough time, him and I, but we made it through together. Everyone who knows him loves him because he is respectful and he has stayed out of trouble for the most part. We had a couple problems when he was getting bullied and then again when he almost lost me. But he doesn't party, he doesn't smoke, he doesn't swear in front of me even though I've never watched my mouth around him. I am a "do as I say not as I do" parent. He is just starting to slip a word in here and there. Anyway, he is just a really wonderful young man who will always be my mama's boy.

So that's it. Please don't think I will do nothing but bitch so why bother reading. But I do need a place to complain about life in general and maybe someone will realize they aren't alone when they read my stuff. And in return maybe I won't feel so alone :)

So much for being short. And I just realized every paragraph begins with "So". Lol