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Frustrated ..

I'm a bit frustrated.  I had (my 5th or 6th) colonoscopy yesterday, with an endoscopy to boot. Reason for it was rectal bleeding, that's been happening since September or so of 2005, at least on a continuous basis. Back in high school, I can remember having some rectal bleeding but nothing too severe or caused concern, though the first time I saw it I freaked out (as most normal people would, I suppose) *For date reference, September of 2005 I was 22 and had just graduated college 4 months prior.)

Clicky to find out what happened. Collapse )

Boston neurologist for POTS

Does anyone know of a good Boston neurologist that specializes in POTS? BI seems to get the best reviews around neurology wise.
It has now been three months.... three months I have been fighting this unkown... this monster that has taken my lungs and my entire body hostage... But still... I smile. Ok, so I lie I have four more days since it has been a full three months of constant battle with this unknown disorder... To sum it all up we have found no answers... been dosed with more medication then I would ever think appropriate and still I feel almost the same as I did. I dont complain really because I am so lucky to live in one of the medical capitals of the world but at this point I have no where left to turn... I am 21 and living in the body of a ninety year old and still I smile...

The lungs: still on prednisone, duo neb, recemic epinephrine, mucinex,symbicort and oral anti biotics. And I think we will be starting the nebulized saline because I have a backup of mucus which is thick and clogging my lungs up and causing infection now! yay!

The stomach: omeprezol, Zofran and PhenergeN Coughing has caused a larger problem with the vomiting if vomiting all the time wasnt a big enough problem lol

The pancreas: Lantus and Humulin this is to keep my blood sugar in check because of the prednisone I have deveoped type 1 diabetes so I am on constant insulin. Which has actually made me feel a little bit better!

Allergies: Carry three epi pens because I need three times the amount due to how fast my body reacts, Benadryl twice a day, Claratin or Loritadine twice a day, and nasanex twice a day

On top of all that we have now noticed that I am having issues with my liver due to the amount of medications I am on. Pretty much all the doctors know I am on too much medication but are all scared to take me off any of them because of the reactions I have had before and still have.

Things are kind of at a standstill right now and it is scary because I am not getting much better. When you cant walk down the street due to the wheezyness in your chest it is scary and to know that the doctors cannot pin point the reason your whole body is just attacking itself and then giving up is scary too..

Each day I try to make a project for myself to keep myself busy to take my mind off of how things are going. But as the months roll by this isnt easy it becomes harder and harder and my friends try to help but they know that they cant possibly understand what I am feeling... what I am going through... My family is scared but my dad tries not to show it... letting me venture off to find doctors and specialists myself...never asking questions but rather telling me the answers he thinks he knows at this point I think it is just frustration.

This week I start with a new team of doctors at Mass General. Starting all new from Primary Care to Pulmonology to GI we are getting all new opinions and hope that this time we can figure something out... get some answers because I am not going to let my body win!

This is me doing one of my many a day treatments

First Post.....

Hello! this is my first entry mosty because i have to come to terms that in all likelyhood i have a tumore somewhere between my C1 and C2 vertebrae (or so says the MRI) they won't tell me much except theres a dark mass (tho the story changes repeatedly depending on which doctor i speak too my family GP thought it was a cyst but my neurolist's office (note the receptionist) said they weren't allowed to say much more) of course my neurologist won't see me until the follow up CT (which was surprisingly fast as was the MRI) results come back so in about 10 days or so i suppose.

I'm still hoping its endometrial cells as i have endometriosis. I know theres no cord compression but the idea of a biopsy makes me really uneasy. I do not trust a doctor to do a proper epideral and that high up the risk is so high for injury i'm not impressed. I guess i'll cross that bridge when i come to it.

The location is literally cm's away from the one my grandmother died of. I asked the CT tech if those types of tumors were hereditary (she said she wasn't supposed to say anything but yes...they were.) She also went OH SHIT during the scan but i'm convinced she was on a personal call as the other alternative sucks donkey balls.

my immune system is already toast so i'm hoping its not something horrible or medium horrible...maybe i can just let it stay in there and just not sleep flat on my back (which i haven't been able to do for years) maybe its the result of the skiing accident and is a giant cyst or something...... I'm tired of thinking of the worst case scenario so i'm focussing on all the best case scenarios. In the end....whats there is there and theres not a goddamn thing i can do about it.

The shitty thing is that its promted me to actually want to live for once. As an abuse survivor and long standing mental illness patient (OCD, PTSD, etc.) i've spent most of my life wishing i was dead.....i would like to think that god or whatever listened to better advice than mine.

I've tried talking with other people, usually by way of jokes as being serious makes them quiet and stop talking to me. Nobody knows what to say when waiting to hear the biggest news of ones life so far. I figured i'd try this community out as at least people have been through the wait, the questioning the getting angry and the not knowing exactly what to think.

in the end i have to wait for the last word on the results but i really wish they could tell a person right away. I'm in Canada home of free health care which means long ass waiting times and very little straight answers for a very long period of time.

i'm still very hopeful its just my osteoperosis acting up and a bunch of endometrial cells..... positive thinking seems to be keeping me somewhat sane....

so...has anyone else gone through this? what was your experience like? any advice? as i'm not well i haven't been working for quite some time (finding a doctor in Toronto is like pulling teeth) and they've run tests, i've had laproscopic surgery for endometriosis that continues to be a huge pain issue and i live off oxys due to the pain (mostly abdominal but also my back)

if anyone could maybe sympathize with the situation, want to laugh with me or comment it would be great. The silence IRL is deafening. Its as if i suddenly devoloped social leoprosy even tho i don't talk about it. i do walk with a cane and lately people who used to talk to me pretend they didn't see me as they walk by. Its disheartening. After years of feeling like a pariah for mental health i figured a physical illness would not inspire such.....freaking out-dom but alas it seems to only make things worse.

i wish i had a psych right about now. I'm supposed to but none to be found that will take my case as i've been in the system for 20 years (i'm 30 but look 17)

Hopefully this community will give me a sense of not being so completely alone in this process as i've been alone with my health most of the time as family and friends don't know what to say, get overwhelmed, pretend its not there etc. so i'm used to being alone...i just really don't want to be anymore.

oh...... to help you give a face to the name this is me, i'm Christina



Today I go into Boston... to see a larynongologist... or a throat specialist because I have stridor that just wont go away... it is driving me nuts because of the stridor my nebulized and inhaler medication isnt working right... today we are trying botox to paralize my vocal cords open... I am also going to talk to my PCP about putting in a power port because as it seems I yet have another lung infection... so things are tough.. but I just feel like Im all alone sometimes that I cant to do anything about making myself better and that people dont understand what it feels like to always be sick... always have something wrong... less then a month ago I was in the ICU for almost a week because my lungs and vocal cords just didnt want to work... I want to be the athlete I was I want to be strong like I was but.... no ... now Im living this life... the life of going dr to dr... keeping a binder of records so I always know what they did and why they did it... lists of medicines and a day planner full of doctors and therapists

Couple questions

What do you do when you know you need to go see a doctor, but you don't have one? (ie - you've pretty much fired the ones that you've seen in the past because of things that they've done. i was supposed to have a colonoscopy in sept but i was vomiting blood bc of the prep and the on call dr told me to stop the prep and then it never happened, and it took the dr that was supposed to do the procedure FIVE days to get back to me. and when i talked to the dr that rec'd this dr, and told him that i didn't want to see them anymore bc of the lack of follow through, he told me that i had to bc there wasn't anyone else to see) i also don't have very good ins, and i dont believe that i have any intestinal specialist around me that is covered under my ins.
i've thought about going to the ER, but i've been there before, and they tell me to go to a specialist. they hook me up to an IV, do a catscan, and then tell me to go home bc they won't admit me or do anything bc i'm not near death or have a threat of death.

what do you do? any suggestions?


Dreams ..

So I have *something* wrong with my intestines. Still not sure what, but constipation, diarrhea, rectal bleeding are common (they've tested me for almost everything under the sun, and its not IBS, IBD, Chrons, etc, though I think it may be and they just missed it...) And I teach preschool 40 hours/week. Its getting rather annoying telling my co-teachers "It's a bad butt day." I tend to have a good sense of humor about it, because theres not a whole lot else I could do, but ...

Anyway ....

Last night I had a dream that my family and I were getting ready to drive cross country to CA (I live in CT) and out of no where I had to go to the bathroom, and I just couldn't get up. It just kept coming . and coming ... and coming. And it all felt so real. When I woke up, I was scared that it WAS real, even though I knew I was sleeping I was fearful that my dream was predicting my day.

I dont know how I feel about my illness creeping into my dreams at night.

the so called medical capital of the world

I live near Boston... Boston! supposevly the medical capital of the world... I find myself in and out of inpatient stays... week after week... Now I am home... I am home because they dont know whatelse to do... but somehow... I still smile :)

Since when are doctors suppose to get bored and just give up? They Put a PICC line in my arm and left it there for three months... didnt flush it... didnt clean it... just left it... I call everyday at least four or five times and my Doctor would just ignore me.. and people wonder... why dont you like going to go the Dr? they are suppose to make you feel better... after taking 10 pills twice a day plus chest PT and breathing treatments I still live in a constant haze... I talk to them tell them everything I am feeling and they nodd and say... "I dont know whatelse we can do".... But I smile

I have learned that smiling is a way to get through most things... If you smile and laugh sometimes that pain, frustration, and ill feeling can melt away for a small moment. The ER staff like when I come in (even though I dont) bc no matter how much they poke prod or touch me... I smile and thank them... I ask what tests they are doing and they sit and go over results with me... I want to learn. I want to gain knowlege in my journey...


Brain matter all gooey.

Some days the faucet drips upon this aching heart...
Slice. Dice. Sloppy salsa of my soul.

Venting FrustrationCollapse )

sick but we dont know why

Hi all!

My name is Mandiee and I joined this communitee because... well I have a chronic disease... but the catch is... we dont know what it is! I was born with a mild form of cerebral palsy which I have almost completly recovered from, now living with no deficits. I developed renal tubular acidosis at age 1 which I am now living witht the effects of. I have sensory intigration disorder which means I dont intigrate pain like everyone else... But up until a couple years ago I was considered pretty healthy. Now at age 20 things have really started to go south... last year my lungs started taking a nose dive and now at age 20 my stomach has started revoulting and no longer can I breathe or eat... and the worst part... they do not know why... they dont know why I am no longer able to eat... drink... or sometimes... even walk down the hall... life has become more and more difficult... just to be able to talk to people who know somewhat of what I am going through... I have ha to give up my life... my job... my school.. just knowing someone would be nice... :) I am full of hope :)