Diagnostic Process Questions, and Concerns

General
1

Hi all :)

My name is Nic, and I am just beginning the diagnostic process. My rheumatoligist believes I have lupus, but obviously running a lot of blood tests, and xrays.... well within the next few weeks at least bc I don't have insurance (I'm a student at USF, and thus broke) and having to just wait in pain as I try to get the county and/or state to help me. Yea for canes or I'd be basically immobile. (Hehe) Just a quick back story.... I have had either crohns or UC (by the time I was well enough fir a colonoscopy, the flare was down to low for a full diagnoses, I guess) for about 8yrs now, with really not many big problems after my couple week hospital stay with me changing my diet, and such. But now for the past month, my left knee, ankle, and right foot "pointer toe" are ungodly swollen, and painful.

Now I have been researching my butt off, but still extremely nervous. It's been weeks since I began taking Prednisone, and if I don't take at least 40mg a day, I can't walk. I'm tired 24/7, but can't sleep longer than a couple hours at a time, my lips are always so dry, and I just feel like crap in general. How long do flare ups last usually? School begins on Monday and I'm nervous about it getting worse again, since it varies day to day how painful it is. How do you deal with the pain when you don't have a choice but to do things? Besides prednisone, I have been drinking black cherry juice and aloe Vera, eatting as much fruit as possible (which isn't hard right now since I'm also always starving!), resting as much as possible (which bc of my amazing BF, I have been able to quite a bit.)

Also, how long does it take for blood work to get back after its sent out? Is there a good chance I'll need meds for the rest of my life for it? If I do have lupus, has any of you ever have a baby with the disease, and how'd it go, physically and mentally? (I'm only 27, and was planning on kids in the next couple years...) If it's not lupus, what else could it be?

I know this is a lot of questions, and a long post, but I'm just nervous to be honest. I'm really trying to be strong, but I break down more often than I want to admit, especially after I had a "good day" with walking, go to bed, and the next day is complete torture again... Ugh. Thanks for any advice and info, it will be much appreciated.

Sincerely,

Nic

2

With intestinal immune disorders there is something called Reiter's disease- which is an inflammatory arthritis associated with your bowel dz - something for you to research

3

Hi Nic...sorry I don't have any advice for you. Just beginning this lupus journey myself. I just wanted to say welcome and good luck with everything.

I can tell you though, that in general labs take about 2-3 days to come back with some tests taking up to a week.

Jen

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Hello I am glad your doctor has started you on the right track. Slow down and take a breath I actually felt better when pregnant with my 2nd child than I have at any other time. Rest and pacing your self are very important. I usually have my blood work back within a week and my lab sends my an email of the results at the same time my doctor gets the results. I hope your studies go well. Keep us posted.

5

Thanks for the replies. Ya, I need to relax more, lots of people tell me that. Haha. Just hard for me when I'm used to being the one who does/sets up everything and can multi task with the best of them. So it's just been a hard adjustment lately, and I feel like the sooner I know as much as possible to what I could be dealing with, the sooner I can start making choices to better myself. I hate being a "couch dweller".... hehe. Appreciate it everyone. :)

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Welcome Nic! Everyone here is soo wonderful and supportive! I’d be lost without them. Feel free to come and ask as many questions or just to vent. I’m still in the diagnosing process myself. It’s a very long process. I’m sorry to hear about the 40 mg of pred…I can’t wait to get off of it myself. I want my sexy back lol. Has your doctor started you on plaquenil? That seems to be the first drug of choice. Just try to take one day at a time. (Easier said than done I know)it’s wonderful that your bf is very supportive. You are very fortunate in that regard.

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Ya, I'm slowly learning that if I awake feeling pretty good and start getting stuff done, I def pay for it the next day. I'm just frustrated that it's a hurry up and wait process. I am looking forward to being able to at least get my life somewhat back. I know it's hard for people not really knowing how badly my joints hurt to completely understand either, which I know the close people in my life aren't judging me and believe me when I tell them how painful it is, but I still feel extremely bad about it. I want to be a productive member of society, but I feel more like a drain on society, and especially my BF and parents. Oh weelll.... So is life. Thanks for the Advice.

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Ann A,

Thanks for the encouraging words. My BF and myself were actually talking about my future career with Lupus or whatever it is, last night. He really is great, and helped me feel better about it too. "Well, if you end up not being able to teach or work with babies/young kids because of this stuff, we'll be ok. You'll finish your degree as planned, and then you'll have a degree at least, and we will find you something you do like and can do with it." :) This past year, me and him, have literally gone through hell and back with family issues, medical issues (for us both), and death. He is one thing in my life I am thankful for, and hope whatever this is, it doesn't interfere with our marriage talks too much, cause I don't know what I'd do without him. :)

Ann A. said:

I sincerely hope that you can find ways to feel as though you are a productive member of society. There are many avenues for productivity that do not require large amounts of physical exertion. If you can't get your "old" life back, I hope that you are endowed with the imagination and flexibility to create a new one. To adapt is to survive and some people survive quite well.

There are two women that I think are great examples: One is Mary Shomon (http://thyroid.about.com/bio/Mary-Shomon-350.htm) and other is Lisa Copen (http://chronicfatigue.about.com/od/supportadvocacy/a/lcopen.htm). And, one of my personal heroines is Henrietta Aladiem (http://www.boston.com/news/globe/obituaries/articles/2005/11/17/hen...). Each of these women has found a way to be productive and to help other people even though they themselves were living with chronic illnesses. I don't think either of them had the life that she originally planned. But boy have they had lives that were productive.

Best wishes on finding a life in which you can see yourself as productive.