Where is Dejibo?
 

I am pretty sick with pancrease stuff from the C drug, and I went to the ER in the big pain time, and they said they were demanding to keep me. I sid NO NO NO!!!! I just have a full round of IVSM, and its dangerous for me to be here! They were upset, but offered NO alternatives, or out patient choices to help me. He really thought he could bully me into staying. NOPE! I went home. my PCP was angry and spoke against vs going. He told me I did the right thing ot RUN RUN

I lasted 2 days at home. I was extremely ill. It was coming from all ends. I reached a point that I was no longer making sense. I was sweaty, confused, peeing on mysefl, and soiled myself. DH found me in bed in speaking nonsense, feverish at 102, curled into the fetal position, and wet from many sources, from sweat to pee. The old lady cat was at the foot of my bed YOWLING! She kept running to get daddy.

I was admitted thru the ER and it took 12 sticks WITH ultra sound to find a vein. I was given dilauded before they even tried to get me off the foor. Zofran, Dilauded, phernergan, are given with great freedroms. I have proven myself to this MD over many years to be trust worthy to this MD. I work hard for a less is more approach. I am normally griping about getting OFF this stuff!

I was very ill when I got here, and speaking out of my head. Thank you for all the prayers, love, hugs, and well wishes. both public and private. its been a long road, but today i am begining to feel half human. I have sat up in a chair for bit, and even had ONE ounce of orange sherbet.

The best gift of all was today I got my very own Pic line! its a double lumen, and its the latest model. No more worries about blood draws, or IV access. My poor little arms are so bruised, swollen, sore. I am TIRED of seeing MDs.

One guy said its bowel, one said bladder, one said MS, one said they want 4 feel of my intesting to be removed. not two in the whole bunch can agree.

I am too sick to go home, and some of these MDS are really scary. Instead of saying " I dont know" they spout twenty dollar words that aint wirth spit! As soon as I can find an exit, I am gone, gone, gone. At least I am more aware 0f my surroundings, and situation.

I will be back in a few days or a week. Love to all.

Dej, prayers are going out for you in droves:hug::hug::hug:

You've been through the wringer lately, girl!!

I hope and pray you can get a medical person that can investigate and figure out what's going on without the guessing...

I am so sorry to hear that you are still feeling so crappy! It just plain sucks! I sure wish there was something that could be done for you!

If I could take some of this pain and sickness away for you, I would do it in an instant.

Thinking of you often and have you in my prayers....:hug:

All of this is really scary. I hope they figure out what is wrong soon so that you can be treated properly.

Good luck and a hasty recovery.

gmi

:mad: This must be really scary for you as well as extremely miserable.

I hope there will be some really good medical people on your case who will fix you up.

If all else fails, demand more orange sherbet!

Awwww Dej! That just down right stinks. I am so sorry hun. Hope you feel better soon. See if DH can steal some scaples and let you slice and dice a doc or two on your way out. :hug:

Yeesh, Dej!!!

Get better quik and run home!!!

You da woman!!! :hug:

Awwwww, Dej, I'm so sorry for your pain. I hope you dropped the Copax like a hot potato. If it were a miracle drug, I cound see puttin up with the sides, but it ain't!!!!.:mad:

Feel better soon..:hug::hug:

After your post on FB, I tracked you down here. I am SOOOO sorry you have to go through this and I hope you are well very soon. Keep us posted on your recovery.

Dej, so sorry this all happened to you, and all at once. Ouch!

Sending prayers your way. I wish you a very, speedy recovery. :hug:

They better find out what is wrong and get rid of it for you. I'm glad the pic line is in, that's what you needed.:grouphug:

Edited to add: Copaxone put me through 5 months from heck and back. And that was after 3 1/2 years of never missing a day. The last 1/2 year was horrible. I had to visit 6 different doctors all with different opinions on what I had.

Finally sent to a Scientist/Oncologist with his own huge testing facilities to test every fluid in my body under a scope. Total septic infection from the "Copaxone". I was so happy to find a doctor who would finally blame a drug, from his findings.

I'm so sorry Dej
 

You poor darling, I really feel for you. :hug:

Sending gentle hugs and lots of prayers. Please get better soon......and quick enough for you to be outa there and treated at home. xxx

My gosh, Dej! I'd avoid the C like the plague! :eek: I sure do hope you feel better soon and get to go home. Please keep us in the loop.....we worry about you. :hug:

Oh Deijibo,
I hope one doctor can put on their big person panties and put you and your issues first and advocate for you instead of just pretending their answers are the ones. Scary stuff!!!

feel better soon!:hug:

I am sending prayers your way! hope you get better soon, or at least they give you some answers.:hug:

I am so sorry! Hope they can finally figure out what is going on and help you. Going home probably is not the best idea.;):hug:

Dej, praying big time. Sorry to hear about this. :hug::hug:

Praying for you, neighbor

(((Dej))) I hope you start feeling better soon. Rest up as much as you can so you can go home. :hug:

Dej:: So sorry to hear how bad you are feeling. :Sick:

My prayers are going out to you. :smileypray::smileypray:


Jappy :hug:

:hug: So sorry you are going through all of this. I hope you continue to feel better and get out of there and get home. Sending tons of :hug:.

Wish you the best Dej. Congrats on Pic Line. I ask chemo nurses when im getting Ty why doesnt everyone in here you stick 5 times have 1? $$.

If intestines spring a leak anywhere, that'll make you deadly ill. Ive heard 1 case. I dont know if youre able to drink tons of water but that sure helps i.v. stick. Ive seen people pee orange and man..thats rough on internals.

Good luck.

hope you are feeling better soon! take care!

I think it's important to keep a balanced view of things especially when there are people who will make dmd decisions based on experiences of others.

The stats for pancreatic disease as a result of C are a bit vague.
And I'm sure Dej wouldn't mind me saying , but she wasn't taking the med consistently and had recently had a break too. Who knows how these drugs affect us when we don't take them right? What if something goes into overdrive to make up for the dose it missed?

and lastly, I'm only defending C because I'm on it and biased :D

still in the hospital. Im still pretty sick. I dont feel well enough to catch up on what I have missed, but will do so when I reach home again.

Please know that my experience was RARE on copaxone. dont let it cause a moments hesitation when trying to decide on a DMD for your own treatments. Copaxone is a great drug and has done wonderful things for wonderful people.

I am feeling the love of all of the well wishes. thanks for that. I promise to catch up when I can.

Thanks for checking in, Dej. I hope you recover quickly and are home soon. There's really no place like home to make you feel better. :hug:

My only bad experience on C was the 3 times I mustve hit a vein. Wow was it hard to get air in/out of my lungs. The night before I did deep breathing exercises for who knows why. Thank god. I had to lay still as possible, not move, not worry, just get air in and out slowly but surely. My stomach was also in spasm, heart slowed to a crawl but went THUMP..THUMP when it beat. That I dont miss. I still take a shot time to time (maybe 2 per month) when Tysabri isnt cutting it. Hey Dej..I didnt have internet access when I was in hospital! :) Hope you get out soon.

Dej, still praying for you for a quick recovery. Have they found out your problem yet, like how to treat it? How is the brain problem you have behaving? I hope you are well soon my dear.:hug:

When you get a chance let us know how your DH is handling all this news, okay?

I had a bad experience on C too, but mine was different and nowhere near as severe as your's. I started fitting and after stopping Copaxone, the fits waned into oblivion.

It's good to hear from you. Sending many healing prayers. :hug:

Do you mind if I ask, how on earth did you hit a vein? Where on earth were you jabbing? :eek:

Dej, thanks for checking in! Hope you feel better soon! :hug::hug:


That almost sounds like an immediate post injection reaction (IPIR). Feels like someone sucker punched ya in the stomach and took all the air out of your lungs. If it ever happens again, don't lay down. Generally makes it worse and causes it to last for a longer period of time. (found that out the hard way). Sitting still and doing the breathing exercises helps a lot.

Still in the hospital
 

well, here I sit, STILL in the dadgum hospital.

The pic line is a God send! no more painful sticks, pokes, blood draws, and BS at all hours, with worries of infiltrates, and the constant 3 day deadline. This puppy can stay in for up to one year.

I was bumped up on my diet today, and have been able to eat jello now and tea without regifting it.

My blood work has now all returned to normal status, and there is talk of maybe going home on Monday. I am told I was much sicker than even I thought I was. I guess I have had this whole pancreatitis circle going on for the better part of the year, and with each new attack I created more and more damage to my organ. it had spread into the intestine and into the duodenum. When I went on IVSM it caused a dramatic drop in inflammation in my entire body, and as the IVSM washed out of my system the inflammation returned with a vengance, and a hunger to take me over.

Thank you for all the wonderful thoughts, wishes, prayers, and hugs. you guys rock. I have not backed up to read the past events of the website yet, I am just too sick to pay attention yet. Even once home, it will take me several days or maybe longer to feel well enough to park myself in front of the computer.

***thanks to my friend for typing this for me, while I kicked back and sipped on my tea****

Dej, glad the bloodwork is improving. Rest up and feel better soon! :hug::hug:

Wow Dej. Glad to hear the bloodwork is improving. But sheesh! Your poor body. I hope you feel better soon.

I hope you feel well enough to go home soon.

:hug:, sox

Dej of course we hate the fact youre "in" but im so glad you have pic line. I know it would be god send to many of the senior senior citizens in chemo room I watch while getting Ty.

The Copaxone was inj into legs about where the keyboard is resting now, possibly closer to inner thigh. Yes i know theres major artery/veins close by. All i injected was legs for 2 1/2 years. Im paralized from chest down, numb from between collar bone & chest all the way to my toes. Spinal cord's wide open about 1 vertebrate between c6-c7 from slicing it with c7 21yrs ago come June. I'll upload pics one day.

Oh my gosh Dej, I got really scared for you just reading all of this!! :(

I hope you're feeling better and I'm so sorry for what you've been through. You don't deserve any of this. :hug:

I talked the MD into allowing me a two day trial at home. If I am not better or at least more stable in two days they will put me right back in the place. Pic line is still in place, and the kitties are so happy to see me. The DH is the one who was suffering. He was miserable with me in that place.

Please say prayers that I can stay at home, and not end up back in that place. I MUST be able to demonstrate eating, and NOT giving it back. The MDs are all so very kind, but it feelsso good to be home, even if only for a short while.

Wont see much of me, since I am medicated and beyond nausea. Thanks for the well wishes. If I am forced to return it will be for 14 days bowel rest, on TPN and such. Oh the joy!

I feel so bad for you.. :(
What do the doctor say is wrong with you?

I hope you can stay home too. :hug::hug: