Remicade Fails, Hospital Stays and Congratulations, Summer's Over....

So my second last post was a bit of a jinx I believe. The one about the third Remicade working. Well, it didn't. In fact it made me so bad that I ended up in the hospital for 3 days.
I got the Remicade on Wednesday(August 17th) afternoon and felt OK until that night. My legs always hurt afterwards but they were SO BAD that night and on Thursday and Friday. By Saturday my right side and back were in a bit of pain but not unbareable. But on Tuesday I woke up to nausea, vomiting and extreme dizziness to the point of almost passing out. I stayed home from work and slept for most of the day and went to bed(hopped up on pain meds) hoping to be better the next morning and maybe I just had a virus.
By Wednesday morning I was in so much pain I went to emerge and they hooked me up to Morphine for the pain and Tachycardia and fluids for the dehydration I had gotten overnight. They started out telling me that they would just give me an ultrasound to see what the problem was, but the internist doctor talked to me and the Cat Scan and Gastrolux were soon to follow. And if you've had that stuff you know how bad it is. Especially when you are extrememly nauseous. I only ended up getting 1 1/2 cups of 2 done and I went for the scan. When I got back from the scan they told me they would be admitting me.
So I was admitted to a room with only one other extremely senile lady who didn't know what day it was so she didn't really bother me. She wasn't even there for most of the days anyway so it was like having a private room. I stayed from Wednesday morning to Friday morning and in that time I had ‎7 blood tests, 4 x-rays, a CT scan, ultrasound, 6 rounds of Morphine, 1 major allergic reaction, 48 hours of nothing but liquids and IV nutrition, a few rounds of anti-biotics I get released with a diagnosis of ya, it was problably an infection. Nothing showed on any of the tests so they told me I could go home if I wanted to which I said "HECK YES!!!!" It wasn't that I didn't like being in the hospital it was just that I hadn't eaten anything since that Sunday night except jello and apple juice and my flares usually last a week to ten days so I was starting to feel hungry for more than they could offer there so I opted to come home. I was discharged and home early Friday afternoon and continued to get better and by Sunday night into Monday I was pretty much 100%.
I think Remicade is not working for me as this was my worst reaction to date. The next one might really send me for a flare. I have a Gastro appointment tomorrow so we'll see what comes of it. I think I mght be in for a surgery in my VERY near future....
As a last homage to my hospital stay here are my pics. WARNING: Most of these are from when I was high off of Morphine so ya....

Just eatin' my Jell-O....

 Finally go a shower....

Sister visiting....

All of my cards from my kidlets....

My stockpile of liquid foods....

My balloons my loverly mama brought me!

My crazy pole!

Where that pole leads. To the itchiest and most sore IV site EVER!!!!!

My TV/Computer/phone combo type deal that I woudn't live without....

Juuuuuust a little high....

P.S. Summer's over which is both good and bad at the same time....



Lots to talk about.... tomorrow....

Lots to share but it's late and I'm tired so I'll post more tomorrow but for now the video I made almost a year ago and just finally got around to uploading...


http://www.youtube.com/watch?v=kLwGngmFmPw&

3rd Remicade Tomorrow and Still Skeptical....

Contrary to popular belief I AM still alive, just busy with summer and all of it's craziness. Anyway, I have my third Remicade tomorrow and I have yet to reap any benefit from it. Here's hoping....

Quick! Get me to Staples because "that was easy"!....

What was I worried about? I'm not exactly sure as I sit here in my comfy recliner. Here's how my first Remicade Infusion went down....

It all started at 9 am when my mom woke me up asking me if I wanted to go a little earlier(my original appointment was for 12:30pm). I said I would be there ASAP, got up, ate breakfast, jumped in the shower, threw on the comfiest clothes I could find and we(my mom and I) were off. On the way there I had my regrets but I told myself I'd be fine.
After quickly stoping by Shopper's to pay the government my piddly little $95 dollar deductable so that I could have a $4,000 drug I surpassed the 50 or so people in the waiting room for the Urgent Care Clinic(man that felt good, almost like a VIP!) and went into the infusion room.
I met my nurse Wendy and two older gentlemen just finishing up(I came at an odd time). Wendy was VEERRRYYYy nice! She walked me through where everything is, what she would be doing, and took my weight. Then she had me sit in the (rather comfy) chair and she did my temperature and blood pressure. It was a bit high(I think because I was a tad nervous).
Then she started my IV(on the first try! WOO HOO! I have really bad veins) and stared the saline(which I hate because it burns so freaking awfully much!). She ran over to the Pharmacy and got my Remicade solution mixed up. They brought it, she hooked it up on slow drip just to make sure I could handle it, and away I went. I sat, watched the end of The View with Weird Al, watched the news about the idiot that dove down onto a pile of rocks on the weeked, then watched Hoarders with my new friend Julie(another patient whose second time it was). The nurse(who was also semi-deaf) came over periodically to ask how I was feeling, take vitals and temperature, and turn up the drip.
Well it only took about two hours and I was done. I had a few more mgs. of fluids and out came the IV(my most unfavourite part on account of the tape and came home. No affects what-so-ever except I'm a tad tired and I have a small headache.

....so that was my exciting day of boring-ness. I hope next time it's more eventful....

Yes, I did like the musical "Annie" as a kid....

♪♫The Remicade will flow, tomorrow!
Bet your bottom dollar that, tomorrow!...There`ll be Remicade.
Just thinkin`about, tomorrow!
Gotta hang on `till, TOMORROW!!!!!
Come what may....♪♫

I Knew It Was A Long Shot....

So the Remicade Gods must have something against me.
I had to cancel my loading dose appointments on account of a "Fungus". It's on my shoulders and rib area. I went to my GI doctor yesterday and she said she wanted me to see a dermatologist before I proceed. So I settled in for a two month wait of Entocort and phone call tag with yet another doctor's office. So imagine my surprise when I get a call, not 24 hours after the referral was sent that I go on Tuesday! Awsome! So there's nothing left to do now but sit back, relax, and wait for Tuesday morning....

....and maybe paint my nails. ;D

Caterpillers and Concrete Appointments....

Well, first thing's first. I managed to save five drowning caterpillers from within the depths of a rather wet Tonka Truck. The first two were revived within mere seconds of laying on the nice warm stone in the sunshine and were quickly wisked away into the Dollarstore bug catcher. The third and fourth took about 3 and 4 minutes, respectively. But the fifth little guy who was deemed "Abidulio" by a certain four year-old little girl just wouldn't budge. I thought it was only going to be a 80% survival of the pack but this little girl wouldn't give up. She held him in her hands, force fed him leaves and even held him up high so that he could be "closer to the sun". And gosh darn it if after ten minutes of this the little bugger didn't start crawling! He was then re-introduced to his friends in the nice-stick-and-leaf-filled-captivity where he is still living out his days. When asked why his name was Abidulio she answered, "Because that's his name and I like it!" Here are a couple of pictures of the little guy.

Just goes to show you that even the little things can brighten your day and we as adults need to slow down and see the world for what it is. And the best way to do this is though the eyes of children. Man I love my job!





Health Update: I have Remicade Appointments! My application went through and I go June 22nd for the first round, July 4th for the second and August 3rd for the last loading dose. I'm so excited about getting off of the Entocort and Imuran(I hate swallowing pills, but then again, who does?)but I'm getting scared for the Remicade. Here's hoping it works!!!! *FINGERS AND TOES CROSSED*

Remicade or Remi-can't????

So as some of you know I am waiting to get my Remicade treatment, and it's been quite the ordeal. Since Remicade is $30,000-$40,000 dollars a year and I just don't have that kind of change sitting around I have to get approval for government funding. I apparently didn't mention that I didn't have Private Health Insurance so I've been on and off the phone trying to sort that out when all I needed was a quick fax and I'm home free. So now I currently wait for an appointment. Being sick is exhausting........

Things I Learned today....

~Getting up early sucks.

~Children who scream incessantly give me a headache and really get on my nerves.

~Police Officers are hypocrites because they speed and talk on their cell phones while driving.

~You cannot do a Mother's Day craft with 7 two year-olds without a large mess.
  ~The smiles on the mom's faces makes all the mess and chaos worth it....

We Never Give Them Enough Credit....

Daycare Thought of the Day: We really don't give our feet enough credit....unless you're two years old. Then you thank them with every step you take. "Sank-You Feets! I yov you! Sank-You! Sank-You!" with every step she takes! Rock on girlie! Rock on! And everyone remember to thank their feet today!