sicker than your average

...that'sthe name of a poem I'm working on about my struggle with Lupus thus far.

anyways lately I've been just that. I'm soooooooo sick of being sick right about now

earlier this month I had to have a colonoscopy b/c I was bleeding from my rectum ( i know TMI) Turns

out it was hemmorhoids and an anal fissure. and as of this past weekend I had a lymph node become swollen on just the right side of my neck,the swelling has since gone away, but it's not completely gone.

None of my other nodes are swollen as of yet, but I am throroughly annoyed w/ myself and this illness.

There are days where I feel fine and others I feel like I'm gonna FLIPPIN' DIE! 

My money is being syphoned into paying bills from procedures & doctor visits.

It seems like everyday something new pops up that is wrong with me, and my dr is soooooooo super quick to ship me off to another phy. that's gonna suck some more money out of me.  I'm only 26 yrs old, I should be living it up.  But I'm stuck with the sickness.h

 Is there anyone in this forum who was diagnosed in their 20's, and could share the progress ( if any) that has been made since. 

Should I just cut my losses now and apply for SSI disablity and give up my dream of going to culinary school to become a chef.  b/c it seems the lupus thing has got me down for the count.

Sweet Meeks.  I wasn't diagnosed until I was 48.  I just wanted to let you know that I feel so badly for you.  I've been going through the same mess you are with one thing wrong after another and the medical system syphoning my paycheck through all its' various pieces of equipment.  I keep working full time because my daughter is at cullinary school at Le Cordon Bleu Atlanta.  She's finished her course work and now is at her externship in Disney World.  She finishes in May, just before her 23rd b-day.  BTW, I'm not paying for her classes- she got a loan. I'm just paying room and board. She goes to school with kids who got loans to cover everything and work a few hours a week at the school for spending money.  It's expensive, but worth it. I hope your rheumy gets your lupus under control (yes it's possible!!) and you're able to pursue cullinary school, perhaps one not as expensive. There are other women on this forum who are your age and going to school. It's a bear, but they're doing it. I'm sending you LOTS of Positive Energy Sweek Meeks!!  Love, Butterflake

Hi Meeks:

I'm 43 yrs old and can say that I had lupus when I was 23 yrs old. I wasn't officially dx'd with lupus until I was 36 but the word lupus was mentioned when I was 23. I can say that I went to college got a degree, had a baby, worked a full time job and managed the best I could. I had periods of time that I was healthy and doing well and others when I was laid off from a job because I missed to many days from work.

I wouldn't give up on your dreams. I know it's frustrating being so sick. I've done a terrible thing I was a lot sick with my lupus, I insisted that we try various drugs and I traded just having lupus to having lupus and cancer now. I've gotten a blood cancer from one of the meds I used to treat my lupus. I'm 43 and should be in the prime of my life and I'm lucky if I can walk to the toliet. I've been told I'll need a bone marrow transplant in 4 to 5 years, and they don't know if they'll find me a donor. So I asked my oncologist does that mean I'm going to die and he said w/o a transplant yes I'm gonna die. I'm not gonna give up though, I'm hanging in there and I think that you're young enough that you can go into remission and do the things you want to in your life. Sometimes we've just got to be patient and give our meds time to work.

Don't give up Meeks, try to stay strong. We're pulling for you and wishing you the best. Know that we're here for you and we do understand.

Best Wishes,

Barbara

barbara lee: oops! I forgot to give you my email
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Post Edited By Moderator (Lynnwood) : 3/27/2008 7:46:33 PM (GMT-6)

Hi Meeks

         Just a note to say that you are in my thoughts and you are at the opposite end from my age. I know how hard this is to settle in our minds....never mind the sore, tired body. I was only recently diagnosed with SLE but they figure it was there for sometime and it has been a rough 9 mths.... sick and tired of all the Drs. tests and  has sure altered my life. Never give up your dreams altho they may be done differently.. without our dreams we lose part of ourselves.

     Up until 5 mths ago I had a very busy sewing business which I so enjoyed and am targeting to get back-----probably in an altered fashion but I make notes in my journal as to how I can accomplish some of what I used to undertake.May until Nov are usually my busy times .So take care of yourself and remember there are a lot of supporters on this site.I figure having dealt with preinvasive breast cancer 3 yrs ago I have learned to only do what is necessary and leave the rest for another time...

Hi Meeks, 

   Never give up on your dreams!!!! I was dx'd when I was 32, but had lupus for 13 years before that. I'm now 50 years old and doing quite well. We never know from day to day how this disease will affect us, but we can't stop living just waiting for the next downfall. Lupus has knocked me down many times in the past, but I always bounce back. I take it one day at a time and cross one bridge at at time. I still have times when I get depressed and want to give up, but I know I can't let that happen. Go for your dreams and live!!

   Hang in there and take care. Keep us updated. You will be in my thoughts and prayers.

                                                                Babs

Meeks, I have had times when the lupus left me unable to do much of anything. Instead of giving up on my dreams I learned to adjust the pace I reach for them to my illness. I am in grad school and pregnant right now. At 26 I was so sick I rarely left the bed due to pain and fatigue. I was untreated and undxed. I say apply for disability and work on your health. Once you have things under control then you can try and do school again. Your ANA numbers have absolutely nothing to do with disease activity. Those numbers jump all over the place some people feel great with a sky high ANA and others like me come close to dying or do die with a negative ANA.

You don't have to give up all your dreams, adjust your time table to accomodate your disease.

Hello Meeks,

I was dxt in 1/07 with an ANA of 1600+. (0-99) is normal. But my doc, like Redrose's doc said ANA level has nothing to do with severity, it just indicates you have lupus.  I haven't had a flare since, and when I went last month to have my blood levels checked, since I am off all meds.  The ANA wasn't checked.  I was curious though what it might be without a flare, but I didn't ask to have him test it.  Prayed you'd be feeling better.