Overwhelmed with the health problems today

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ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 5/15/2008 9:23 AM (GMT -7)   
Hi all, just need to vent to people who understand.  I am 27 yrs old and I can deal with the Crohn's, IBS, reflux/gastritis, endometriosis,thyroid disease, elevated liver enzymes that require a lot of tests and arthritis (well, the arthritis really makes me the maddest) that I was blessed with.  But, I'm getting a little overwhelmed this week. 
 
1) I went to my Cimzia clinical trial appt Monday and was told the trial will be ending in 2 weeks, now that the drug is FDA approved, but I can buy it through the drug company, so I signed some papers.  This is after being told 2 wks before that the trial would continue to monitor the long-term effects.  Still, no big deal, other than it may be outrageously expensive.
 
2) So, the next day, I saw my GI and he decided the Cimzia wouldn't be worth the price since I'm still having a lot of arthritis and he doesn't want me taking arthritis meds or NSAIDs anymore, since I have 3 ulcers right now.  Wants to try Humira instead, as long as rheumy approved.  Called rheumy and that's fine, just waiting to see if insurance approves and if the doctor's office is even working on it.  I'm worried about having a long gap between the two and feeling even worse that I already do.  I'm 27...I should not feel like I am 87.  But, we'll have to deal with it and wait for the Humira.
 
3)So today I saw my thryoid doctor.  Just expected the usual, "labs look good, here's a new prescription."  No, there is a "thing" in my neck that she has been watching that has gotten bigger.  Not a goiter, just a "thing."  She says I need to come back and have what is similar but less invasive than a biopsy.  She will send the results to a specialist who will determine if it "needs to go" and, if so, she'll "just cut it out."  She said it like it was no big deal.  And, she can't see me for 2 months, meaning I get to worry about having a tumor or something in my neck for a while. 
 
So, that is what has pushed me over the edge today.  Too much unknown right now and too many things to worry about.  Sorry for the long post, thanks for listening (or reading).  =) 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/15/2008 9:32 AM (GMT -7)   
Oh my goodness ZenaWP, that is a lot to deal with. I can relate, I went through some crap the last two weeks that had me feeling overwhelmed. Sometimes it does get to be too much to handle, especially when we're young. It's just so not fair that we even have to deal with such things, when everyone I know my own age (I'm 30) is healthy. Waiting to get seen and for test results is just the worst too. The unknown can be very scary.

Anyway, I know I probably drove the people on this board nuts the last few weeks myself. But they have been so supportive and helpful. Really helped me get through it, knowing I could come here and vent. Ask questions. So please do the same. Remember you are not alone. Try to do something NICE for yourself too okay? ((((HUGS)))) I hope everything turns out okay (mine so far has ended up okay, so I'm pulling for you!).
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/15/2008 10:03 AM (GMT -7)   
I want to send my hugs and wishes your way! That is so much to deal with, especially not being able to get in for 2 months to figure out that "thing!" And, switching meds... That is so much to handle. I will hope for you peace to come your way!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 5/15/2008 11:38 AM (GMT -7)   
Wishing the best of luck. I hope you start feeling better soon...

Maybe the Humira will work well for you!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/15/2008 8:32 PM (GMT -7)   
Hi There, First off, sorry you are going through all this. I just started Humira and its helped alot. Need my dose increased, but a month with COBRA is having me wait. Can you see a different doctor for the thyroid, someone who could take care of it sooner. Could you call the doctor and just talk and explain your nerves and waiting so long. They are human, they have to understand what you are going through. If it was their spouse, they would be worried too. I had two close friends go through Thyroid Cancer with flying colors. Not saying yours is Cancer, but it's the most treatable cancer there is. I hope that helps. You have alot to deal with, sending you lots of HUGSSSSSSSSS! Take care of yourself and tell them, you can't wait. They will fit you in. Just be a bit pushy! LOL

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/16/2008 7:20 AM (GMT -7)   
Thanks for all of the responses!  I appreciate the support.  My doctor's office did confirm they are working on getting the Humira set up; meanwhile, the Cimzia people called to set that up and I told them we were going with Humira.  Turns out, my copay for both are the same, although Cimzia will cost my insurance about twice as much as Humira will.  The Cimzia people tried telling me they would cover my copays for the first year, since I had been on the trial, but I decided it was worth the $800 I'll have to pay for a year of Humira to hopefully have something that helps more. 
 
I looked up some stuff online about the thyroid "thing" which may be a "nodule" from the way the internet reads and it said that 95% of thyroid nodules are benign.  So, let's hope this website was correct and that's what it is.  I may call in a week or so and she if she's had any cancellations and can move up my appointment, though. 
 
Thanks everyone.  I'll let you know if the Humira helps more than the Cimzia did and what happens with my neck "thing."  Take care.
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/17/2008 5:30 PM (GMT -7)   
Hi Zena My teen's Dad had a nodule and had it removed. Hope things go good with that but try not to worry until you have to. lol gail

Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 5/17/2008 10:43 PM (GMT -7)   
Hi Zena....love and prayers to you. You are so young to have to deal with all this. My mother has this philosophy that she won't worry about something until there is actual evidence that she needs to worry...works for her...but not for me...I am a chronic worrier. ... can't help it. I am keeping you in my prayers dear one, and hoping that these next 2 months will go by quickly. Try to keep yourself busy with the summer approaching, try to enjoy these next 2 months out in the sunshine or out at the beach.
Bod Bless.
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 

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