Hi Masha!

I was just telling my husband how crazy this disease is too! I know we all have a host of symptoms and it just seems so random! I never lie down during the day but that is exactly what I was doing for the past couple of hours because I've been feeling so crummy since my 2nd infusion 3 days ago. I, too, have dental issues...I have TMJ and those fun random bumps that show up around my mouth...oh and, of course, the extremely fragile teeth that most recently put me in my dentist's chair in March after an endoscopy that cracked one tooth and one crown!

I'm usually decent at joking about my situation. I mean, it's not often someone has such a "fun" assortment of issues like GPA, Sjogren's, Hashimoto's, Raynauds, TMJ, IBS, arthritis, and of course the insomnia LOL. Plus I've gone through some pretty painful things in my life including a tear duct intubation (like 17 shots into my eyeball during one process), frozen shoulder and a sacral laminectomy...basically when I slipped in the shower 6 years ago I got an undetected CSF leak that made me feel like a level 10 migraine whenever I was upright! That leak enlarged 3 Tarlov cysts that started "choking" my spinal cord nerves and paralyzing my left side. Thankfully the surgery by an extremely rare and gifted surgeon in Dallas fixed me up and I was good as new. I've given birth and had a hysterectomy and, of course, went through that horrid lung biopsy but I've never felt so bad as I have with all the things GPA has "given" me! I give you and everyone here a lot of credit for keeping your spirits up!!! Between all the meds and blood tests and symptoms I experience daily it is hard to be upbeat! Plus I'm on so many meds I could open up a pharmacy! LOL

I have watched myself this past year go from a vibrant, strong, happy person to a sickly looking waif! I'm 5'3", down to about 92 pounds, my once long hair is like straw and my skin is sallow. I'm ok with the pain and even the obvious effects this disease is having on my body. What I am having a hard time with is the effect it is having on my husband, parents, and daughter. I'm extremely lucky to have them all in my life but I know how hard it is for them to see my like this and that bothers me a lot. I try to be reassuring but sometimes it is nearly impossible! I'm working on that though. It's unfortunate that my body hates steroids because they gave me a tiny bit of pain relief--however one of my side effects with them is depression and I cried every morning for the 2 months I was on them. My body is so odd I swear! I can take Ambien 12.5mg and sleep 4 hours tops yet show me one prednisone and I fall apart! ;p

Gah sorry for yammering on so much! It is just so nice talking to you and others who understand what I'm going through!

Have a wonderful weekend!