The ambien doesn't help me sleep. I'm basically just trying to control the pain and upset stomach right now. I was sick last week. It was very upsetting to me. I tried to have lunch with Mom and ended up leaving because I was nauseas. I started throwing up in the car on the way home, in a plastic bag. I had to drive 30 minutes with vomit on my clothes and I have no idea why I was so sick. I hate that. The week of Thanksgiving was tough for me. I could hardly walk the pain was so intense. Elyshia (my best friend) had her wedding Nov. 23. I made it through the day, barely. I just want to be able to enjoy days like that..not limping around, bound to the bathroom, crying alone in pain so I don't ruin everyone else's day. I'm just counting down the days til Chicago. I pray everyday they'll be able to help me without surgery.
I'm still trying to be positive though and I'm very excited about the holidays. Merry Christmas! (just in case I don't make it back to blog before then!)
Sunday, December 4, 2011
Friday, November 18, 2011
Back at the Hospital
I was discharged oct 26, 2011. i was not prepared at all for what i had to deal with when i got out. the fluid retention felt like i was carrying a 20 lb baby that hated me. i still haven't dropped the weight but my size has gone down some and after two trips to the ER i found pain medication that is helping me manage. I had a hard time with my heart rate skyrocketing..still am. i'm back at the hospital now. about 10 days ago i lost my appetite again and the nausea and vomiting came back. thats when i came here..4 days ago.
the doctors and nurses are having a difficult time professionally i feel because they see a young smiling girl and my tests results keep coming back ok so the symptoms i'm complaining of aren't adding up to them. However, after speaking to my personal GI doc, they've resolved that issue. the inflammation of my colon has gone down a little, however there is still alot of blockage causing pain in my abdomen. The infection i had a few weeks ago is now testing negative. the upper endoscopy showed my reflux has resurfaced and there is inflammation of my esophogas and the acids in my stomach may be intensifying the infection's symptoms.
they were going to put me on TPN again, but to save from a new picc line and the pain of all the fluid retention, i requested we wait, change my food, and try seeing if i can hold it down. so far i had eggs and grits for breakfast...all stayed down. i had plain noodles, chicken noodle soup, saltines and ice cream for lunch...i think that proved to be a little to much and the ice cream didn't stay with me...but i'm building back an appetite, which is good.
they have decided to send me home on adavan (im not sure how to spell it) which will help with some anxiety but also treats nausea. i'm also going to be taking ambien since ive stopped sleeping again. my steroids will also be upped so no weight loss for a while like i'd hoped...i just really gotta watch it!
just a month left until chicago..i hope they can help me, i'm ready for a real life again...this has become too normal and that worries me..will i have a hard time adjusting to regular life again?
the doctors and nurses are having a difficult time professionally i feel because they see a young smiling girl and my tests results keep coming back ok so the symptoms i'm complaining of aren't adding up to them. However, after speaking to my personal GI doc, they've resolved that issue. the inflammation of my colon has gone down a little, however there is still alot of blockage causing pain in my abdomen. The infection i had a few weeks ago is now testing negative. the upper endoscopy showed my reflux has resurfaced and there is inflammation of my esophogas and the acids in my stomach may be intensifying the infection's symptoms.
they were going to put me on TPN again, but to save from a new picc line and the pain of all the fluid retention, i requested we wait, change my food, and try seeing if i can hold it down. so far i had eggs and grits for breakfast...all stayed down. i had plain noodles, chicken noodle soup, saltines and ice cream for lunch...i think that proved to be a little to much and the ice cream didn't stay with me...but i'm building back an appetite, which is good.
they have decided to send me home on adavan (im not sure how to spell it) which will help with some anxiety but also treats nausea. i'm also going to be taking ambien since ive stopped sleeping again. my steroids will also be upped so no weight loss for a while like i'd hoped...i just really gotta watch it!
just a month left until chicago..i hope they can help me, i'm ready for a real life again...this has become too normal and that worries me..will i have a hard time adjusting to regular life again?
Saturday, October 22, 2011
day 3 hospital
woke up very out of it. i keep thinkin i can work..then i remember im on tons of pain and nausea meds. im so tired. i w as up and down all night, funny dreams, upset stomach,i barely made it a few times. the drugs make it hard to manuver.im feelin ok right now.but im really drugged up.
moms been with me a lot. i like that alot.
i got lots of flowers.theyre beautiful. thanks to all their senders!
love
jenn
moms been with me a lot. i like that alot.
i got lots of flowers.theyre beautiful. thanks to all their senders!
love
jenn
Friday, October 21, 2011
rough week
i had a really rough week. tuesday night i spent the entire night throwing up and with ongoing fevers and chills. i woke up unable to swallow. everything was burning.
i went to a regular followup appoint with my gi dr thursday and he sent me straight to the hospital to be admitted to receive tpn..where im fed through an iv. im also receiving iv steroids and pain and nausea meds. there might also be ablood transfusion to help build that back up.
the dr let me eat low residue solid food today..just a little so we will see.id like to keep giving it arest and not overdo it. im not going back to work. i have an advocate doing my medicaid and disability claims so thats a relief in a way.
they just gave me the nausea meds they give chemo patientsn its makin me a little sleepy.
another note im going to chicago dec 19 to 21 to northwestern to evaluate me for a stem cell transplant
i went to a regular followup appoint with my gi dr thursday and he sent me straight to the hospital to be admitted to receive tpn..where im fed through an iv. im also receiving iv steroids and pain and nausea meds. there might also be ablood transfusion to help build that back up.
the dr let me eat low residue solid food today..just a little so we will see.id like to keep giving it arest and not overdo it. im not going back to work. i have an advocate doing my medicaid and disability claims so thats a relief in a way.
they just gave me the nausea meds they give chemo patientsn its makin me a little sleepy.
another note im going to chicago dec 19 to 21 to northwestern to evaluate me for a stem cell transplant
Wednesday, October 12, 2011
For Starters
I am creating this blog to help keep my family and friends updated on my health. I think of all of you daily, I just unfortunately haven't had the energy to call everyone lately. I know all of you understand and I appreciate that :)
Lately, it's been tough. For the last year and a half I've battled the pain, the bleeding, the fatigue, the diarrhea, the fevers, etc. alone. God brought me back to the upstate for a reason. He brought me close to family and friends for a reason. I need help. That has been very difficult for me to accept. I hate the thought that I might actually be too sick to do it all myself. I'm now experiencing daily nausea and vomitting, i don't know if it's the medicines (that don't work) or the Crohn's...probably both. The pain has gotten so bad that there are days I can't stand or walk. The pain gets so bad I vomit everyday, regardless of the nausea. I'm tired. I'm still working full time but I leave early alot. That makes me feel guilty and that scares me. It scares me that I think this is normal and that I should feel guilty for leaving work because I'm throwing up in a trashcan behind the register. Is that what I have to look forward to forever? I'm getting very frustrated. Reality just set in last week that I'm actually SICK. I want my life back.
I'm waiting to hear back from Northwestern Memorial about a stem cell transplant now. I've heard amazing things about the results. If they don't think I'm a candidate, then I'll need to see a surgeon. Surgery will be unavoidable at that point. I should know something any day now.
My Aunt Charlotte and Uncle Jeff have been taking care of me. They are an absolute blessing. Without them, there would be A LOT more suffering..thanks guys :)
Lately, it's been tough. For the last year and a half I've battled the pain, the bleeding, the fatigue, the diarrhea, the fevers, etc. alone. God brought me back to the upstate for a reason. He brought me close to family and friends for a reason. I need help. That has been very difficult for me to accept. I hate the thought that I might actually be too sick to do it all myself. I'm now experiencing daily nausea and vomitting, i don't know if it's the medicines (that don't work) or the Crohn's...probably both. The pain has gotten so bad that there are days I can't stand or walk. The pain gets so bad I vomit everyday, regardless of the nausea. I'm tired. I'm still working full time but I leave early alot. That makes me feel guilty and that scares me. It scares me that I think this is normal and that I should feel guilty for leaving work because I'm throwing up in a trashcan behind the register. Is that what I have to look forward to forever? I'm getting very frustrated. Reality just set in last week that I'm actually SICK. I want my life back.
I'm waiting to hear back from Northwestern Memorial about a stem cell transplant now. I've heard amazing things about the results. If they don't think I'm a candidate, then I'll need to see a surgeon. Surgery will be unavoidable at that point. I should know something any day now.
My Aunt Charlotte and Uncle Jeff have been taking care of me. They are an absolute blessing. Without them, there would be A LOT more suffering..thanks guys :)
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