Colorado member looking for penpal

catlady4520

I just recently found this site as I've had UCTD for several years but just recently was diagnosed with CNS vasculitis and am undergoing cytoxan therapy.

I knew my symptoms could change and had previously been on methotrexate and Plaquenil to treat the UCTD. I started having seizures in April and after many tests found out it's definitely lupus of the brain. I just took a new job and am having to fly back and forth from Colo Spgs to Phoenix for training. It's been really tough to deal with the fatigue and horrendous headaches and learn a new job.

I would appreciate any support or suggestions that anyone has! I don't know hardly anyone with this disease and am desperately trying to learn a new job, lose weight with Atkins (lost 80 lbs in the last 1 1/2 yrs, and deal with lupus.
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Catlady4520

SoleSinger · Posted: Sat Aug 20, 2005 11:46 pm Post subject:

Hi Catlady!

I'm in Colorado as well! I was just diagnosed a little over a month ago... I was also on Atkin's for a while... Lost 70lbs in 9 months... loved that diet, because I could stick to it so easily!! Unfortunately, I can't be on it anymore because the lupus is affecting my kidneys... So, I'm trying to find another way of eating that will be as beneficial as Atkin's was for me... Lots of salad right now... woo and hoo put together, let me tell you...

Anyway, just wanted to say hi, and since we seem to have a few things in common, if you want, I'll be your pen pal...
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"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

hatlady · Posted: Sun Aug 21, 2005 1:11 pm Post subject:

Congrats to both of you on the weight loss!

I never tried atkins, couldn't handle the tthought of all that protein! And now, I guess that's a good thing.

I went vegitarian a short time after I was diagnosed - I'll still eat fish and shellfish once or twice a week, but that's it. LOTS of fruit (especially in the summer!) LOTS of veggies, and fairly light on grains - whole grains when I do have them. I lost 10 lbs on that (I'm lucky - that's all I needed to lose) and have maintained my weight without trying.

Catlady, best wishes on all that travel, it can be so exhausting! Be sure to take the time you need - and get plenty of fluids when you travel, that should help balance you out a bit.

Hugs ~

blossom · Posted: Fri Sep 02, 2005 3:51 pm Post subject: hi

I am originally from Colorado Spgs, lived in colorado most of my life, but am in alabama now. Just wanted to say hello. Smile

My brother lives in Granby, and we are going to visit end of sept. I hope the leaves are changing! I miss Colorado so bad, am trying to convince my hubby to move there when he retires.

Hugs, Blossom
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I had an ANA test which my internist said was high and he is referring me to a Neurologist for further testing. He is concerned I have Lupus because of the testing and the symptoms.

Gabogunrin · Newbie Alert Joined: 29 Sep 2005 Posts: 3

I really understand how you fell about the cytoxan procedure just hang in there. it has really healped me alot imagine i used to have 6.5g of protein in my urine, no it is down to 0.75g. I know after the whole process is completed, you doctor might have to put you on oral medication.My hair didnt fall off but i was very nauseo and didnt have any appetite. I really wish you goodluck and hope your body can tolerate the the medication.

catlady4520 · Posted: Mon Oct 03, 2005 6:15 pm Post subject: test

Thanks for your kind words....I'm very frustrated with Cytoxan but my dr wants to put me on Cellcept when I get done with the Cytoxan. Right now, just having problems finding a good vein.
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Catlady4520