Doing LOUSY

 man!  when does it stop?  so i had the Remicade infusion yesterday, it was my 4th .  i walked outof the hospital & that was a miracle because i could barely lift my feet off of the ground that morning. 

the throbbing pain is absent from the joints right now...but i'm still awake @ 4:30am AGAIN with severe leg pain.  ankles &  knees. just a deep, burning, hot, crushing pain.  it's awful.

useless Restaril doesn't work!  the sleep pill? took the thing at 10pm hoping i could sleep through this...NO!

took my limit of dilaudid & tylenol already. having a very sad feeling that i may need to go to the hospital for treatment for the joint pain.  but i really hope my PCP can pull through for me & perhaps increase the dilaudid to 6mg 2 or 3 times a day or add percocet or something else during this bad time.

i can't take any more prednisone!!!!!!  can't can't can't!  need  break for a few weeks.  when i was on it i didn't need as much pain meds, sometimes none at all. but i was breaking down emotionally and aesthetically from the prednisone & it was really making me miserable (plus no sleep while on it too!)

well anyway...thank you for listening. even my cats ran away from me tonite! they wanna sleep! lol.

hoping tomorrow i'll get some help.

erin

Oh Erin,

 

I'm sorry you are in so much pain and it looks as if they are giving you so much in the way of treatment...makes you wonder just what really works for this disease????

 

I have asthma and as a child, I took lots of prednisone, so it is a real eye opener isn't it?? they say not to take it past 3 or 4 in the afternoon if you want to sleep, but with RA, you don't have that option do you?

 

This pain is just something else and when you are expected to keep up with daily life it is just a nightmare...I am in so much pain and I have to force myself to keep up with the driving, and demands of children and my husband and household.

 

How long does it take for the Remicade to work? isn't that considered the last resort in RA meds when nothing else has worked? is it pretty strong?  I am so sorry you are doing these treatments and they are not giving you relief, that is just awful

 

If you have the option to rest or stay in bed, do it!  If not, my heart goes out to you even more.  As far as the pain meds go, I have taken them for other things (painful cycles) during a flare and they did nothing. (I found that disheartening)  Maybe for you, they could give you something super strong. 

Try to hang in there, big big hugs to you.

 

(((((Erin)))))

Erin, I just said a prayer for you.  I hope you can get some rest & be pain free.  I also couldn't sleep last night, feeling like I have the flu.  Anyway, this is about you.  God Bless.

I too am so sorry for what you are going through I too am having trouble finding the right treatment. I have been in severe pain for months now and the doc wont give me anything else but the vicodin. To me it works like bay aspirin. Just hang in there. I will pray for you, that they can find the right treatment. I too had to get bumped up to 20 mg of the steroids a day and scared to death. Me and them don't get along but they work wonders on the tings that need it. I have been on them for a year now. I too get no sleep. My anxiety level rises by 10. If you feel you need to go to the hospital then go..why do they make us suffer??? Please keep us updated...really I hope you get some help.
Lori

(((((((hugs))))))))

hey ya'll

managed so far to keep myself out of the hospital.  went to the PCPs today for bloodwork...i am proud that i actually made it there.

well, have a fever, case of the "D", a little rash across my face, very pale too...recieved a depomedrol shot...and sent home for bed rest for today and the next week.

doubts it's any sort of sepsis, personally i rule that out too.  so it's agreed that this is just a major MAJOR RA FLARE. and perhaps even the possibility of a drug induced lupus. which in reality this one does qualify me & is bad enough to be admitted....but he did leave it up to me.  but, i have gotta keep my butt put for a while.

also could be a trigger of fighting off a germ from being in a room full of people saturday.

nothing has got worse pain wise...so for that i'm grateful.

the next big flare iget i think i will be alright with getting admitted to the hospital..but i'd really hate it now...might seem petty, but with the holidays soon coming...i feel it would drive my mom off the rocker right now.  so if i can tough it out at home till' after christmas????  i wonder if i can get a visiting nurse??????? hmmmm???????

thing that bites is  i KNOW i HAVE to go sometime soon.  there's too many things that need to get checked out, and i do need administered pain meds that are stronger. and all the physicians keep badgering me to really go & be admitted for a few days.

well folks, when this get rough they sure get rough.  for anyone going through the same thing...you'll make it through as sure as i will too.

peace/love

erin

thanks Harley Diva

tonite...distraction wise...has been very good to me.  a little bit of an increase in pain tonite & this fever is annoying and keeping me up.  6 and 7am seems to be the magic number for falling asleep.

so yeah, distraction tonite was good. Top Model marathon...then i fell asleep from 10am till1am and now still up @5. 

with my honey tonite we're going (hopefully) to see Raul Malo at a place in Montclair. He's from the group the MAVERICKS...i hope i make it (another reason why i was avoiding the hospital)

you know...i feel so bad sometimes that i spoil plans.  i almost hate it when we have to RSVP or buy tickets to shows because 9 times outa 10 i can't make it.  there were soooo many shows and events we missed because i ended up in the hopsital.  see what i mean? almost puts a fear in ya.

so i pray to God that by 6pm tonite i can get dressed and go.

my good friend of mine once said to me..."it must be impossible to set goals like this"

his words are so true.  and i'm sure this does not apply for every case, because there are so many folks you have AI diseases and have minimal symptoms & it barely interferes with their lives...that makes me happy that there are people like that.

hah...so for some strange reason...i made a nice donation to the arthitis foundation. really don't have it to spend, but that made me feel better too.  heck...it was only 25 bucks, but every penny counts.  there needs to be a cure for this one day.

you have all been a major help during this bad time.  i'm taking off to my honey's for the weekend...to recoup & hopefully tuesday come back doing better.  a lot of rest & HOPEFULLY SLEEP!  well here's to actually gettin' to sleep this morning.

peace/love

erin

Erin, remember rest, rest then rest some more.
Take care

Jim, 53, 5 level Cervical Laminectory-2003, sclerotic lesions in hip found Nov 2006, GERD, 30% Carotid artery blockage, Kidney Cyst, Asthma, Eye problems, Prostate BPH, Tripling of PSA.

Meds, Tramadol HCl, Flexeril, Omeprazole, Nitrostat, Plavix, Albuterol, Saw Palmetto, Multi Vitamin Mens 

 

Post Edited (Jim-N1BRP) : 12/15/2006 10:16:07 AM (GMT-7)

thinking of u!

Hi Erin - I hope you feel better soon. I've been thinking of you a lot these last few days wondering about you since I haven't been online...now i know why, must've gotten the vibe you weren't well! I'm so sorry to hear how much so!

Take it easy and rest rest rest!!!!

****

huggs and rest up so u can go out and buy me a great gift for christmas hehehehehe yalin

hang in there girl.. we're pulling for ya