Re: Got a note from Chell (and other stuff for lots of people!!)

[Guest guest]

Thanks and everyone! :-D

Sorry I haven't written sooner, I have been pretty busy catching up with life after taking all the time out for the wedding and our vacation. I feel like I'm still behind on my sleep!

Hi to all the newbies!! I hope you are finding this to be the wonderful place it really is!! And happy birthday to everyone with birthdays, Barb and , and anyone else!

My body is finally adjusting to the MTX, and I've had some other drug changes, like we added neurotin and another gram of folic acid, and increased my relafen. My silly shoulders are acting up with bursitis now too, oh, my wheelchair BROKE on me while we were in NY!!! Like, front wheel broke off while we were walking down the road for dinner. *sigh* So I have a new chair, and it's MUCH harder for me to get around with it, and it's affecting my upper body. My hubbie jokes around saying they got me this one thinking I'd get sick of being sore from pushing myself around that I'd get up and walk hahaha We are supposed to be getting that power assist chair soon, at least that's what I'm told.

I saw a note, I think from Missy, about DNARRR??? How's that doc's handwriting? Could it be DNA, RVV? That's the russle viper venom test. I'm 99% sure that's a test for the antiphospholipid antibody. I get it maybe once a year. Not sure why, I mean, I have a positive result, maybe they think it will disappear ;-) (Oh, I see a note from Nikki about the same thing!)

Also, there was a post about the spinal tap. I get those like once a year too. OMG, not fun, at least not for me, I have degenerative disk and I'm very overweight from all the years of the predisone and lack of activity, so they have to use a longer than usual needle, took them five tries last time They had to give me a shot of morphine to help me through it. Mine are to check for MS. I do have some stuff showing up on my MRI and most of the symptoms of MS, and I do have gook in the spinal fluid that points to MS, but they said some of it could just be other things going on with me. It's so difficult to get a diagnosis with *anything* positive! One neurologist says "Classic MS" and another says lupus damage. I wish there was one authority that could say "yup, it's this and this and this, take this and this and you'll be better". Don't we all?

I go next week for another DEXAscan. They are doing this one on my wrist because of my weight. Another silly thing if you ask me. I have been having them on my back/hip to keep an eye on the osteoporosis, there seems to be so much more of me in my hips, wouldn't they get a better look? hehehe

My rheumy wants me to look into bariatric surgery. I have esophagus motility problems (dysphagia) and I'm on sooo much meds, I don't see how I'd qualify. But she said that the bad arthritis in my knees isn't from the lupus, it's from my weight, and she wants me to get rid of it, and in her eyes, the best way is the surgery. She said we'd deal with medication absorbtion issues later. I think she needs a brain transplant. So I figure, I'll look into it, chances are I won't be a candidate, but at least I looked into it for her.

a, the baby is beautiful!! Can we take turns watching her for you?

And , you're in my thoughts through your ordeal, I think about you often when I remember what it was like with my ex. You'll be fine, just continue being as strong as you are!! *hugs*

Deanna, girl, I demand you stop getting so sick!! Sheesh!! I'm looking forward to your posts about how well you're doing and your being pain-free!!

Last thing, I wrote to Shirley about her stomach probs from the MTX. I've found that ginger beer helps a good bit. Goya makes it, and you find it in the international food section in the supermarket. It's a bit strong, so be careful not to inhale while the glass is near your nose!! It has capsicum in it as well as the ginger, so it's spicy! But it helps. That with a few ginger cookies usually works enough to take my mind off the nausea. And Shirley, for the nose sores from it, I mix the medicated blistex that comes in the tube, not the stick, with some of that triple antibiotic cream and it makes them dealable. The mouth sores, well, I got a prescription mouthwash, you can make something close to it though, mix some children's liquid benedryl and mylanta, they both come in cherry flavor, just rinse your mouth really well a few times a day. My rx has lidocaine and prednisone and nyzoral or something in it, but the other should help as well.

OK, I'm done gabbing!! I'll try to keep in touch more often. I'll send wedding pix soon :-D

Wishing everyone a painfree weekend!Chell

Got a note from Chell

Sounds like she had a wonderful time on her honeymoon! She even went to my favorite place, Niagara Falls! Let's all wish her the best on her new life!