Lupusville USA: Mowse's Journey

My body is hurting so bad right now. Its a nasty bone,joint, spasm,muscular pain that burns withing my limbs. Pins and needlles are tingling thru out shooting inside my feet and finger tips.

My legs ache so bad i am unable to walk,stand sit, lie down it really doesn't matter what i do the pain won't stop or let up. My BP has not been lower than 130/90 in months. My hemaglobin is constantly dropping we're at a 3 now and that while I am on TPN feedings for 12 hours every night for the last 3 and a half weeks. Procrit is back to weekly injections and Vit.D was daily,weekly and now monthly but still I am malnurished. In the middle of a heatwave I am wearing jeans and jackets and my hands are turning blue while I'm sitting out on the beach..people looking at me like I am crazy.

The bursts of silver halos still appear in my eyes(both) now but are accompanied with blimps of pain and the interfere with my vision. My face swells,hands,ankles and feet. The hips feels as if they are damaged I can't swing them in a sexy manner. I look more like a  robot wearing a garter belt.My ankles give out and walking stops with or without a cane..My left kidney feels like its trying to come out from under my shoulder blade increasing with each breath I take. Percocet doesn't help so maybe I should go back to Vicodin ES. It would be awesome if I could get Oxycontin, boy those were the good days and the pain is far worse now..Endocrinologist finally admitted I had 2 small tumors in my neck..parathyroid but he wanted to wait 3 months  to rule out a vit.D defiency..well judging from the levels of, amounts of and areas of pain i think we have a winner. At least one culprit. My meds are: Methotrexate, Celexa, Cymbalta, Levoxyl, Folic Acid, Coreg, Tekturna, Benicar, Tegretol, Klonopin, Vit.D, Duragesic Patches, Procrit, TPN,  Percocet, and yet I am suffering more now than ever.

I have both Narrow angled and a rare form of low tension ( pressure) glaucoma. I see the specialist @ 8:30 this morning to find out exactly how much damage is there. I've had  this area of blurry stuff that blocks what I see or makes things very blurry and difficult to drive when its raining..it is NOT a result of the laser iridotomy I had last July.. My shoulders pop in their sockets sometimes they lock into place and there's NO  movement at all. it happened in my left wrist/hand too. took 15 minutes to unlock and the pain made me want to eat thru my wrist to get it off.fingers wouldn't even move..yet still no explaination. Kidney stones are back again..not that they ever left..my heart needs to be looked at. I am not going there until its done..I am unable to add on anymore at this time. I am seeing my therapist twice weekly and my primary( Team capt.) every 2 weeks til i get the thoughts of leaving this place out of system. I was depressed and tired of hurting/suffering so much I said: Dying is so much easier cause  a life of pain hurts too damn much" and then I wondered how long i can drive with my eyes closed on the expressway b4 I hit something..these were my true feelings and i was honest when i told them. They both agreed to put me on abilify and keep very close tabs on me. I am so tired of the increase in pain, the stress, and the being unable to go anywhere when the beach is calling me.. I push myself at times but then i pay for it.. we are all suffering here so i know you all understand or have even felt the way I do now..I walk around so close to tears everyday, sometimes they just fall where they may..God is an awesome God. This I know to be true. however i am a human being with lots of pain and sometimes it gets the best of me..when your own mother calls you a weak person who's copping out..thats makes you feel like a nothing  and i haven't heard from her since. I walk around now for the last 4 weeks with my IV port accessed for my intrevenous feedings 12 hours a night, which means I am going to the bathroon every 2 hours then I unhook at pass out for another 4 to 5 hours cause i'm exhausted but she doesn't know this cause she never bothered to visit call or ask..well I am about done for now, my fingertips are numb again and wow they hurt..gonna go to sleep nowwill see you all tomorrow, Be Well my friends and God Bless Us All.

Dawne