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Can I post? Not sure where to put it

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Can I post? Not sure where to put it

Postby bonnie » Wed Mar 03, 2004 08:18 am

by bonnie (1096 Posts), Wed Mar 03, 2004 08:18 am

Hi Gals. Although I have only met a few of you, I feel like I can tell you anything and that you'd understand. So here it goes.

For those of you interested (or following my saga), I was going back to my Rheumy yesterday (3/2) to see how my flare is doing and to see if we can start dropping the prednisone. Well, I left there even more upset then when I went. Not only is the flare not any better, but now they think that I also have an infection so they took a blood culture (which for those who've never had one, looked like I was filling three "mini coke bottles") in addition to a whole slew of other bloods. I also need to go for a ct scan on Friday (which I think I am going to reschedule to Tuesday -- my b-day -- b/c Yoni has a class on Friday that I love too) to help figure it out. They said if it's an infection, then the only treatment is IV antibiotics (I take Enbrel, which suppresses your immune system and makes infections dangerous apparently). If it isn't an infection than they'd like to add back meds. My only issue is I don't remember if the drug they want to add was Ok'd by dr. E. So, once I have the results, I am going to walk over to the clinic and ask Nurse Jennifer. I don't get it! I am very upset, and feel like I'm never going to get the okay. I know that I am being selfish, given I do have 1 healthy son.

Thanks ladies for letting me vent. You are really the best [;)]



Yoni's ima

Yonatan 7/10/2002 (35 weeks PE)

CHECK OUT MY WEBSITE . . .
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Re : Can I post? Not sure where to put it

Postby catherine » Wed Mar 03, 2004 08:57 am

by catherine (2832 Posts), Wed Mar 03, 2004 08:57 am

Bonnie, that bites big time!!! Still honey, one step at a time. When you are on such intense immune-suppressive therapy you don't want to mess with infections. Do you feel ill? Fingers majorly crossed that they don't find anything abcessy on your CT scan.

BTW, you aren't selfish at all. Don't beat yourself up about what are entirely normal feelings. Who here wouldn't want more kids? Better than most we know what it takes to get them, what is at stake, and how much we want them to come into the world under the safest and healthiest of circumstances.

Hopefully you'll get all your little ducks in a row and you and DH can get to work. I'd offer some baby sitting but it would have to be virtual LOL! Can you tape Yoni to the screen?

Hugs

Catherine
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Re : Can I post? Not sure where to put it

Postby julie f » Wed Mar 03, 2004 09:04 am

by julie f (7993 Posts), Wed Mar 03, 2004 09:04 am

Bonnie,

Ditto to what Catherine said - you're not being selfish at all! I want a houseful of rugrats!

I'm really sorry about this set-back. It is so frustrating when your body doesn't cooperate with you. I will pray that your scan looks good and that you're able to start working on #2 very soon!

Julie (27)
Zachary James, 7/22/03-7/27/03, born at 26wks - severe pe

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Re : Can I post? Not sure where to put it

Postby bonnie » Wed Mar 03, 2004 09:30 am

by bonnie (1096 Posts), Wed Mar 03, 2004 09:30 am

Thanks ladies. I knew that you'd be supportive [;)].

Catherine, to answer your questions I have been running a low grade fever and feeling a little "run down". Here's the thing, last July, I got something called "Costochondritis". It is where the cartilige separates from the breast bone (right at the sternum). It has never gotten better. At first, they said it was taking a long time to heal b/c nothing heals quickly on me (thanks to the meds. . . you're really in a catch 22!). However, I need to keep a "temperature log" b/c of the enbrel (and the fact that I've gotten pneumonia before while on it, and didn't bother to tell anyone how miserable I was feeling --I'm famous for not sharing the truth about how I am doing, I hate the attention). So, when they looked at my temp log and then analyze the costo thing, they thought, hey it should be at least getting better. Instead, I have an indentation on my chest where it is, along with a nice RED circle that is hot to the touch. Their current thought process is that somehow, the separation has gotten infected. If it turns out that it isn't infected, then they are thinking it isn't healing b/c of the flare, and clearly we need to add other meds (I personally think that they are just trying to be overly cautious).

Now, that I've bored you all to death . . .

Thanks again for listening.

Yoni's ima

Yonatan 7/10/2002 (35 weeks PE)

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Re : Can I post? Not sure where to put it

Postby akemt » Wed Mar 03, 2004 10:18 am

by akemt (4961 Posts), Wed Mar 03, 2004 10:18 am

Bonnie,

From the sounds of it, they are right to do the testing. I know it s a pain, but I'm sure you want to start off a pregnancy in the best of health...even those of us without autoimmune issues (me) have a hard enough time just being pregnant. Ugh. LOL You'll be here soon I hope!

Catherine (22), Moderator (pregnant again)
DH Britton (27)
Emma Margaret (03/02/03) 37 weeks from PIH & oligo
Baby #2 due August 11, 2004
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Re : Can I post? Not sure where to put it

Postby paljane8 » Wed Mar 03, 2004 07:38 pm

by paljane8 (1416 Posts), Wed Mar 03, 2004 07:38 pm

Bonnie,

I am so sorry! I was wondering how you are. Let us know how that blood work is. I hope remission is on the near horizon.

Nancy Eastwood
Moderator/WA State Co-Coordinator

ds-8yrs, dd-7yrs
Scott-4yrs (PE)
Janie-5/12/03 (PIH, oligo and low blood flow)
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Re : Can I post? Not sure where to put it

Postby catherine » Wed Mar 03, 2004 08:03 pm

by catherine (2832 Posts), Wed Mar 03, 2004 08:03 pm

Bonnie, I'm passing you my crown, you my dear are the queen of denial!! What did you think your pneumonia was? A mild cough?!! I'll keep my fingers even more tightly crossed that they don't see anything snuggled up to your sternum.

Good luck for friday's appointments.. I'm sending you major "appropriate white cell with the munchies for nasty antibiotic-sensitive bacteria" vibes[:X][:X]

Catherine
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Re : Can I post? Not sure where to put it

Postby bonnie » Wed Mar 03, 2004 08:44 pm

by bonnie (1096 Posts), Wed Mar 03, 2004 08:44 pm

Thanks Catherine. Actually, yes, I did think it was just a bad cough [:D]. I honestly didn't think that it was a big deal. I think that's why dh never believes me. He'll ask how I'm feeling and my standard response is "fine". He'll crack up laughing and tell me that it looks like I've been punched in the eyes (black circles) and that my eyes are very "glassy" looking. What can I say, I HATE attention.[;)]

I'll keep you posted. . . here's hoping it's really nothing.

Yoni's ima

Yonatan 7/10/2002 (35 weeks PE)

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Re : Can I post? Not sure where to put it

Postby bonnie » Tue Mar 09, 2004 08:13 am

by bonnie (1096 Posts), Tue Mar 09, 2004 08:13 am

Well ladies, I am off for the much awaited CT scan [;)] (sarcasm, in case you don't know me yet). The blood work only showed a "high white blood cell count", which according to my rheumy can mean either infection or inflammation. So, they're using the scan to determine which it is. Hopefully, by the time I leave the hospital I will know which way things are heading (i.e. antibiotics or new meds. . .). I'll keep you posted.

On a side note, aren't you all jealous to how I am spending my b-day?? [:D].



Yoni's ima

Yonatan 7/10/2002 (35 weeks PE)

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bonnie
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Re : Can I post? Not sure where to put it

Postby laura » Tue Mar 09, 2004 09:03 am

by laura (5139 Posts), Tue Mar 09, 2004 09:03 am

Happy birthday, sweetpea, and I'm keeping my fingers crossed that you come out all clear- you let us know how you are doing as soon as you can.

I just realized I've been watching this thread closely and never even posted! How are you ever going to know that I care? [:p] Oh, well, I mean whatever Catherine says, she always says everything better anyway. (Is that an Irish thing?)


Now, do that scan and go treat yourself to lunch at a nice restaurant, then a trip to Nordys[:D] Happy Birthday!

Laura
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