Trying to look on the posative doesn't seem to always work so hot..

[bluefenox]

I am trying to keep from drowning in depression. The last two months have been especially hard, my mom's youngest brother was in a serious motorcycle wreck last month he was dangling by a thread clinging to life.. on the good side he made it and can walk, bad side lots of damage to ribs and lungs and he is going to be in pain for a very long time.. probably for ever. After losing my mom (his sister) in an ATV accident day before mothers day in '01 the whole family was just brought to our knees in worry and grief. Then I start bleeding more and more. I am borderline needing another transfusion.

I am fighting hard to get on humera for the first time. My doc who said i should do this is making me get many many tests over n over including blood tests.. kinda hard to do when you have non.

Then i tried to get out to the beach to relax.. a 2.5 hour drive from where i live.I went with a friend and i drove. Well relaxing it was.. for the first day then massive bleeding started to the point i was filling the toilet with blood 2 to 6 times then it would stop.. then start. Then when we were doing the last day of sight seeing my car died on me. We were stuck there two more days, my friend missed work, and i got slammed with a huge repair bill for a new alternator and we were worrying i would land in the hospital out there. My friend couldn't get back home to work and i would be out in the middle of no where in a strange hospital since he couldnt drive my car.

I get back home to find i started bleeding again.. then get a call from a friend who had been in another bad car wreck.. some teenager was texting while driving and hit her when she was at a complete stop.. the girl was going around 35 or more mph and WHAM.

with all this going on i have been going through sleep studies because i can't sleep for more then 2 hours at a time most of the time it's every 20 min i wake up. ITs for lots of reasons but usually mind bending stress or pain... i am told now i have sleep apnea. Yeah color me not surprised with the sheer amount of gastric tubes that have obliterated my sinuses for the last 20 yrs. They really need to make those things in sizes. My sinuses have always been way too small for those tubes and they tear up every thing i bleed the entire time it's in my nose. I would have murdered me a few docs when i found out just a couple years ago that it's possible to have the tube come out of your mouth rather then threaded into your sinuses. I fount that way more comfortable then feeling like i had a railroad spike up my nose right into my brain and down the back of my throat.

This last week while i was doing sleep tests w a c-pap and the last of the tests i need for humera, the doc insisted yet again on a chest xray to scan for TB.. but he blood tested me not two weeks before and it was negative. he keeps popping up with more and more for me to do. It's been almost two months of tests, i get that it can be a dangerous drug but JEEZE! I know plenty of people who are on it who didn't have to do half of this stuff.

The docs order last week was to get vaccinated, hep a, hep b , pneumonia, flue i had an adverse reaction to the last vaccine they gave me two months ago that was for tetanus and whooping cough. Two hours after the shot i found my self turning super pale and bright red.At first it was all one or the other then sides of my face started alternating. I felt like someone had come along and beat me with the "crazy stick" all the sudden i was antsy shaking upset, angry and above all super super paranoid feeling like i should bolt out and run for my car. I was shaking,sweating and could hardly breath, it was like every nerve in my body was trying to get every signal in at once causing a shivering stuttering shut down, and as my luck would have it.. i drove friends to a restaurant. It is times like that i really wish more of my friends could drive a stick shift.

I got home before the stuff REALLY hit. I was so out of it was walking into walls,picked up the phone to call my doc but kept forgetting why i went to get the phone.. thank god for benadryl. I took a large dose and prayed it would stop. It did but i was out of it for three days with terrible agony in that arm. I have had it really sore before but that.. i couldn't use my arm hardly at all.

So I did call my doctor they said " well that vaccine is known to cause problems in about one out of every five adults.. its known to attack your nervous system..but i doubt it was the shot you had to have either taken something or had an allergic reaction to something you ate." and that my friends is what i call the doctor "good ol boy"clause. the I know that doctor should have told you this but i will cover this up by saying it couldn't have been the doctors fault or the med.. that is how they keep from being sued. You have to have another doctor willing to stand up and say anotehr one screwed up. You could imagine what that person's career would be like if they threw one of their own under the bus like that.. how ever it should be done if someone screwed up! AHem .. any how

I had not eaten that day, nore had i taken any meds or any pill that i don't take every day already. Blew that theory of thiers right out the window..

Well i made the decision to go on humera three months ago. The surgeons and the gastros have been playing the usual game of "patient hot potato" or "ping pong patient"that's right i don't want her you take her.. no it's your job this you have to fix.. no it's not my problem she is not an easy patient and her case has always been very non text book and hard.

The surgeons refuse to touch me. 23 emergency surgeries..yeah 23 major emergency surgeries. 1. because they use the same tests over n over to look for problems when they don't work with someone full of scar tissue that is pulling organs where they don't naturally go ( ct scans DONT WORK ON ME the scar tissue hides way too much), plus the whole missing most of my organs any how thing..

2. They never listen. ever. i will say something is wrong, land in the ER dozens of times.. sometimes for up to 6 mo with pain they can't figure out or bleeding they can't find where it's coming from either.., then i get accused of farming for pain meds.. then BOOOM something shows up, explodes and i am rushed to surgery. That sums up the last 20 yrs of my life since i fist fell to crohns.( that and they spend more time arguing over which disease it is then addressing the problem, every other doc says "crohn's, no U/C) well i haven't had a colon since '91 and 4 ft of my small bowel was damaged beyond being able to heal. Last I checked.. the small bowel was not called a colon...

3.some brilliant idiot decided to make a law and get it passed that if a surgeon has a patient die for any reason on their table they are given a black mark on their record.. so many marks means you get your licensee pulled and you are done working as a doctor. Brilliant.. no one will touch a chronically ill case, or someone who has had to have so many surgeries, that are also COMPLICATED surgeries. So they refuse to touch me. My choice is to live like this.. or take humera which is my last and only option.. wow decisions decisions.

Any how back to the doc being really way past "cautious"and right over to either stalling, having second thoughts or reveling in causing me more pain with test after scope after test. Blood tests, vaccines, ex rays His staff calling me up to six times a day for DIFFERENT things not knowing they are all calling me, usually the one time of day i can get any sleep at all causing me to be weak and tired. just when i think i have finally done it all somehow with having to be driven to the tests because to get there i can't drive because i have had to give up sleep that day to be out when you can get an appointment. This has also gone on for 3 mo now. Just when i think i am at the end of his "to do for dr.paranoid"list he adds more.

This week it was the chest exray, more blood tests to see if i need a transfusion or have any infections.. again.He also insisted i get a hep a hep b vaccine, then also the flue and pneumonia. LUCKY ME 4 vaccines two in each arm. I came armed with much benadryl and Tylenol in the system hoping to got not to have to go through that kind of a reaction again.The nurse came in grabbed my bicepts and dug her nails into my arm.. she grabbed it so hard i almost fell out of my chair, stunned by the pain she then starts yanking the muscle like a rabid dog with a chew toy. I couldn't' breath i couldn't talk my eyes were watering her fingers were almost meeting right next to my arm bone.Yeah not exaggerating. Then she kept shaking it and yelling at me to relax.. and she stabbed me clear up by my shoulder.. so why the fuck was tearing up my bicep?!?! Before i could try to snap out of it and tell her she was KILLING ME.. of course she would have known if she didn't have her arm fluttering in my face shaking my poor arms..Then she jetted icecold vaccine in there like she wanted to see what would happen if you jet it as hard and as fast as you can.. that was it i was starting to pass out.. too much pain at once. Then she moved on to my other arm i kept trying to gasp something out and managed to slap at her with my now throbbing arm she had already gotten to. then it was a repeat to my other arm.I tried to stammer out WHAT THE HELL LADY but could only still gasp. I was in a daze.. just wanted the hell out of there and figured i would let the docs know what she did when i could. My friend luckily had drove me that day.

Two and a half hours after i left i came home and fell asleep.. i woke up shivering so hard my brass bed was ratting like a rattle snake.. I went to sit up and my arm was three times its normal size and it literally felt like they had done surgery on it.. so much pain that when i tried to lift my self into a sitting up position.. i screamed and almost blacked out.

I have no core muscles after 23 abdominal surgeries.. i laid there trying like hell to figure out what the hell was wrong with my arm.. i wasn't able to think. I ran for more benadryle i couldn't use my right arm or move it. I got that and Tylenol.. i took my temp 102. in an hour 103.7 and climbing. I passed out sleeping.. it got worse and worse..I called the on call doc told her what was going on. She said to get to the ER. i had a friend bring me to the er. we waited in the waiting room for several hours. I got triaged the guy by some miracle was able to get an iv in me with one stick. for years now they have had to go to my feet or neck, or use and ultrasound. i was stuck over 10 times just for a ct scan last month.

when they called me to go back two nurses decided to "triage me again" since i had been there waiting so long. Well i have one arm that if you brush it with your finger i would pass out after screaming.. my other arm was the IV.. every time i get the blood pressure cuff it blows veins w out ivs!I begged them not to do that to my iv, explaining that after 20 yrs of this my veins are shot and it was a miracle that they got one.. they got nasty with me saying " well that's fine if we blow it we will just have to stick you again, i was trying to fight my arm back they both manhandled me and said we need to take you blood pressure again.. i said no it's not your arms and hands getting obliterated every single time i am in this hell hole.. I want to keep my iv.. please don't.. they refused to listen.. i flexed my arm as big as i could so when they went to turn the machine on it was utterly loose. they still took the reading from one that was almost falling off. i sure wasn't going to tell them what i did. Screw them.. with a chain saw! what is with the majority of people in the medical field being cruel, condescending, heartless rude nasty people? if you are so burned out then GET ANOTHER JOB. Don't take this out on patients... and when they are in pain and there for help! Show some compassion for crying out loud!

by the time we got back there they kept saying well you have been taking too much tylenol and benadryl. I said look i am taking that much and still running a fever and my arm is so big i almost fall over., every thing i have ever read on side effects of vaccines were nothing like this. they took my temp saying it was going down but never letting ME see what it said. I take my temp at home with two thermometers because they always say i am not running a fever when i am. Then they tried to tell me i was not really having an allergic reaction the er doc mumbled something about a localized reaction. Umm ok i am not buying that for a minute.My arm has a big spot almost the size of a baseball that was bright bright red with little welts, big welts on top of one giant welt. They tried to blame that on the ice packs. I said the rest of my arm isn't red like that and it's got ice on it too!

I had to have my entire arm covered in ice packs or i would almost pass out from the pain. the on call doc had said with it that swollen nerve damage could happen. The er doc said no your fine just keep up taking Tylenol and benadryl.I got home took my temp not 15 min after we got home it was pushing 104 again.i spent the last four days in hell sweating, scared alone in my bed accept when a friend would come to check on me at night after work. I laid there unable to move other then running for more icepacks, as of yesterday the swelling had spread to my hand and my face and body swelled up so big i could hardly walk. I kept taking the meds hoping at this point that i just died in my sleep. I couldn't take more pain on top if my fistula and bleeding.

I woke up today with my arm only being 2 times as big as usual. My temp spikes to 101 102 then goes way down to about 96-97. my face has lost some of the swelling, the arm.. i still can't lift it w out agony and feeling like i am trying to lift some heavy piece of shoulder armor. The red gross welty spot is much more noticeable now.

The thing that upsets me so bad is i never understand what it is about me that makes them not listen other then the fact i am chronically sick. this had nothing to do with my diseases other then trying to jump hoops set up by a gastro. While i waited in that waiting room i saw something there that really upset me. more and more chronically ill patients are treated in a condescending rude manor. one old woman had been waiting for over 5 hours to be seen..she kept begging them not to keep passing her over she was in agony, they would tell her to go sit down they would get to her when they get to her.. she was not a priority. When i was being led back after two hours there ( she was there long before me) she was taking a cab home unseen by a doc. They yelled at her telling her she is leaving against docs orders telling her that they can't be held responsible for what happens to her if she leaves.. yet they were openly rude and hostile to her. people would come in and be led in a few min after they arrived,but there were 4 chronically ill patients there woken up in the night w something hurting or something wrong and they get shoved in as the last to be seen on the list.

I still wake up disappointed that i am still breathing. I could never have imagined that this would be my life.. that i would be in pain and agony almost all of the time.. and that your insurance defines how you are treated and what they will and wont' do depending on how hard your insurance fights them,And never in a million years would i think that that being chronically ill is seen as some crime, while hospitals keep "cracking down on chronically sick patients going to the er they should be seeing their specialists" ya know what? you wake up in agony with some part of your body shutting down or blowing up. .then YOU make that appointment to see a specialist two to six months later. Chronic illness is not a crime, we are not just a bunch of attention whores who are also seeking pain meds and to be seen as a mix of a crack head off the street and a mental case whiner with the iq of a rock. We are still human, no one would want this kind of attention, their idea of "attention" is sick. Yeah we love being in pain, getting stabbed, humiliated by horrible scopes and horrible doctors.We love being on noxious meds that could kill us, while we take meds to stem the side effects of the side effects.

We thrive on having someone stick us dozens of times with a needle while they sit there fishing around for a vein for over 15 min when your in so much pain already the extra amount they are adding makes you fear your heart will stop from just too much pain already...there are times i can really feel my soul wanting to tear free and be connected to this shell of pain no more. I always hope that somehow i will slip into a coma for a while, or black out or something but no.. i get to be conscious through every horrible agonizing experience.

i also love getting lectured about how i don't have the right to keep hopping from hospital to hospital and doctor to doctor.. yeah. I do have right and you doctors who know so much yet so little about these diseases and what its like.. don't tell me it's not helping me to keep looking for someone anyone who will close this fistula or fix this problem. They never get what it's like to be told " lets wait a few months maybe that fistula will heal on its own.ohh so you are laying in bed because you claim you are in too much pain to function.. and now you stopped eating or drinking and are losing 10 lbs a week? Well my answer is eat. You need to eat" thank you heartless bastard, i am not starving my self because i want to lose weight, i am not a toddler throwing a fit by not eating and holding my breath till my face turns blue. I am not eating because the agony isn't worth it. When you stop eating because while you are laying there starving to death it feels WAY better then the hell that is your guts and back end if you eat one thing.. any thing.