I'm Still Here

[Guest guest]

Hi Gang,

I want so much to go back through every post I've read over the past several days and address each subject, but I'd crash your inboxes and you'd never forgive me. So suffice it to say, that if I have a certain person I want to address about a topic I've seen from them, I'd like to email you directly if that's OK. I'm just reeeeaallly slow getting up to speed. It's still been a rough ride.

For some reason, my body seems to have turned into the rebel without a cause, or has decided to be the most stubborn female on the planet, or both.

I don't know how a body can have one or two primary diseases with the inflammation that goes with them, allergic reactions to every medication tried to stop those, two infections from germs that want to come along for the ride, another infection from the medications to go along with the hypersensitivity, and having to take a medication to stop that infection, and other supplements that need to be taken to offset the side effects from the stuff that is supposed to be helping you in the first place. This is all so I don't have to go on to take the medications that will be more toxic to my body????????????????????????????? HAHA! I sound like I'm trying to be a comedy act at Go Bananas! I'm Not - it's my body!!!!!!!!!!!!!

But if I don't start laughing soon I will go bananas, and I just found you guys, so I can't do that. Anyway, I spent a good long time with my Dr. today, and we decided we'd give it one more shot before moving on to the Methotrexate. He is a believer in Dapsone and the lysosomal enzyme studies, which I've read all about, so I'm going to try that again and pray it doesn't send me into anaphylactic shock - the body seems to be just craving more and more drama (and I never got into acting?). I'm staying at 40mgs prednisone, with the 50mgs Dapsone, and here's the kicker (hey, birthday boy, Russ - are you reading this after your party?) I am to take 800mgs ibuprofen 3x per day, whether I need it or not. I think I need it because when I woke up the other day, I couldn't move my legs, my knees hurt so bad, out of the blue. My body has been playing practical jokes like that to me daily, sometimes hourly. This joke is not funny any more! So Russ, it sounds like Dr. Luggen and Dr. Herman may have spoken after all. (But to be honest, I forgot to ask him this morning).

I go for a CT scan of my chest in 9 hours, to get a baseline, even though my x-ray was normal, I have some fickle, borderline areas in my pulmonary function test, and I have a big tender/numb black and blue area on my sternum, which just developed over the past three days, this goes along with the ever-present laryngeal inflammation and the ever-floppy epiglottis. Then it's on to the Neuro on Thurs. to see what he thinks of this comedy, and what he can throw into the mix (I'm already taking 1800mg Neurontin/per day for these headaches from hell that have "migrainous qualities"and paresthesis - that was mid-Dec, wait till he hears what the fun has been like since then!). I have some real concerns over the vasculitis/ nervous system involvement, which I'm prepared to discuss, but I'll spare you here.

You can probably tell I've drastically changed meds today since I sound like I'm bouncing off the walls. Good thing I got to spend a relaxing dinner with my whole family at my son's home last night. That doesn't happen very often, and who knows with this alien body what's going to happen next?! I'm going to try very hard to stay in the loop with you all, but if I keep ducking in and out, I know you'll understand - at least I hope!

Please bear with me and thank you for all your prayers and support. I send the same out to each of you, with a big bearcat (any UC basketball fans?) hug for all,

Carol G.