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I think I jinxed myself

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Posted 9/27/2007 2:39 AM (GMT 0)
Something weird was going on today.  I felt feverish.  My skin felt hot and I was freezing, my eyes burning for most of the day.  Took temp and it wasn't even high enough to be considered a fever (at least not for me).  99.0F.  But I was shivering under a comforter in a 75 degree house.  Is a bit strange.  Now here is where I jinxed myself.  Overall I have been feeling better, not where I want to be but better.... It's back and I am nearly crawling in the mornings again.  My knees hurt too this time.  There aren't many joints left here people.  Feet, ankles, knees, shoulders, elbows, neck, wrists, hands, jaw.... Isn't this enough?  I don't go for Rituxan infusion until November.  It just isn't right.  3 steps forward, 6 steps back?  There must be something that will work for me?

I am about miserable.  I bought some shoes that will hopefully help at least to get me through the week.  I don't want to go on steroids but may have too.... so much for getting rid of the steroid weight in the first place.  Then my GP decides they won't refill my blood pressure meds after a week of authorization requests sent from the pharmacy.  Say I need an appointment.  I can't afford an appointment because 9 times out of 10 that requires time off from work (dayshift). 

Disappointed I guess.

Theresa

Posted 9/27/2007 4:16 AM (GMT 0)

Theresa, don't wait until Nov. to see doc or get infusion. Call and let him know how miserable you are. You may just be fighting something. A fever of 99 is nothign to scoff at. I've had higher fevers where I dont' feel too bad, and low ones that bedridden me. With the autoimmune issue, anything can cause a flare even a small fever or mild cold! Keep tabs on how you are feeling, make sure you are not coming down with an infection. I know you can't afford time off to see doc, but better one appointment check up rather than 3 or more days sick in bed because this gets worse!

In the meantime, take your vitamins. Drink your water. Get plenty of rest! It doesn't seem to matter HOW good your meds might be, a simple flu can make them feel like you're not taking anything that works, and getting sick is like roulette with your RA - how will your body react this time?

Good luck and take care.

***

Posted 9/27/2007 11:39 AM (GMT 0)
thersa i agree with camama- i know it is hard to take off from work each time and we go to way too many appointments for routine issues but you have now several reasons to go a) your not feeling well b) you need to take your bp med- your not going to do anyone good if you dont put yuor body as a priority. you are valuable enough to get the medical treatment you need my dear friend. i understand your delema but i also care and want you to know you are worth it! good luck and hope you feel better soon! hugs yally
Posted 9/27/2007 9:48 PM (GMT 0)
Hello Theresa,

Sorry you are not well right now. Know how difficult to have to continue working with the terrible joint pain, etc. Am retired now, but worked for a couple of years before I could get my disability retirement under extreme stress from the pain I experienced all day and most of the night. It seems like I had just begun to feel a little relief from the horrble pain and it was time to get up to go back to work again and suffer on my feet all day, trying not to show how much pain I was in.

I do agree with CaMama and yalinda. Get yourself to the doctor. Don't suffer any longer than you have to. Check it out!

Difficult for people who do not have the kind of illness we have to appreciate how hard it is. You are in my prayers and I only have good thoughts for you.

arthurmary
Posted 9/27/2007 10:31 PM (GMT 0)
doh! jody so sorry hun!

mary, yally & camama gave great words of advice. ((((((((((((hugs))))))))))))

think you caught something from one of the kids?

 

now, i know that with say Remicade it's supposed to be every "whatever # of weeks"...but depending on the severity of the disease, the intervels can be shortened.  for me, i go every 3 weeks.

is Rituxan "set at a specific number"?  can this be something that you can receive a little more frequently?

i'd call the rheummy & tell em' how you're feeling.

 

it stinks if this is a flare-up...but if so it shall pass, sooner rather then later i hope.

 

try to rest as much as you can.

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

Posted 9/27/2007 10:34 PM (GMT 0)
Thank you all for your kind words. It really means a lot to know that there are so many other people out there suffering from the very same thing. Yet sometimes you feel so alone. It is a struggle but we keep on keepin on. The under the weather feeling is still there but my spirits are up much higher than yesterday. You guys have really helped. Just showing you care. I hope you know how much I read about everyone and try to keep up and just wish I was here from the beginning so I didn't feel like an outsider trying to push in. I care too, just a bit quieter sometimes.

Theresa
Posted 9/27/2007 10:36 PM (GMT 0)
Rituxan used to be given every six months. It has only very recently been approved for every 4 depending on severity. I am going at the four month mark. I don't think they want to wipe out the whole immune system just the mature b-cells.

I sure hope the next round brings some more promising results. Insurance won't cover remicade but they do cover this.

Theresa
Posted 9/28/2007 3:10 AM (GMT 0)
Hi Theresa,
Talked with you on the insomnia thread...think Erin got us mixed up, cuz my screen name is "babyplace", really similar to yours! I do home daycare, that's where the name comes from. Please, please, don't hesitate to post and chat a bit...I know how you feel about the "outsider" thing, just getting to know everyone too. But they've all been wonderful, and this place has become my haven. We all need each other!! I had been reading posts here for a bit before I joined, saw how much everyone cared for each other, and hoped to get that same kind of help and support.  Without a doubt, I have.
Hugs,
Jody

Post Edited (babyplace) : 9/27/2007 9:20:15 PM (GMT-6)

Posted 9/28/2007 6:40 AM (GMT 0)
eyes  duh eyes hee hee hee...look what i did!  you're right! "doh!"  i did address you Theresa as Jody! LOL...ya' know why?  it is because of the "baby" thing.

i must admit, i've been pretty darn good with the names here b/c many have real similar names especially with "moms" & "baby" and also "blue" and the derivitives of those.

it's tough to keep straight! LOL.

 

Theresa awe...you're so sweet.  i was JUST thinking the same thing as well.

both you AND jody have just fit right on in real quick and always have such kind words for everyone.

seems like everyone's personalities here have meshed so well that i wish we'd all have been here together from the very beginning.

smurf  

Posted 9/29/2007 3:04 AM (GMT 0)
Just reading the posts from today and have to join in to say that I agree, everyone has been great since
I've joined this forum. The support and encouragement is great. When I was first diagnosed, my Rheumatologist basically handed my rx's for meds and sent me on my way. I had so many questions and could find most of the answers right here. Everyone seems so knowledgable about this disease. I hope I am able to help future members as well as you guys have helped me.
Hope everyone has a painfree weekend!
Raven
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