Monday, August 17, 2009
Well this last few days have been hard ones, my breathing, chest pains and weakness have been severe. As long as I stay still it calms down, I'm hoping in a few days it will pass. I went to UCSF on Thursday and they took 9 vials of blood, lol, they don't mess around. I now have 3 more appointments scheduled and waiting to hear back regarding the other specialist I've been sent to. This week I go in for a Esophageal Manometry/Impendence which is a camera is put through my nose to/around my upper GI to see how my muscles are working. It's stays in for 24 hours so the next day another trip to the city to have it removed. It takes 1-2 hours for it to be put in, which I am awake for. They already ruled out any kind of acid or any problems in that nature being the cause of these chest pains. This will tell us how my muscles in that whole area are working. Then the following Monday is my brain MRI (was requested from a doctor outside of UCSF ) so this next week will be another busy one. I'm very happy with all of the UCSF doctors & teams I've met and know in my gut they will find the answers, that's the first time in 20 plus years I've felt that. Even though my body is totally exhausted and my brain in a fog my spirit is happy & relieved. Yes, I'm scared with these new chest pains, dizziness, breathing, ect...but know if I just hold on they will find the cause. The bad news is the Cardio dept is busy till Oct and they cant see me till then. If anyone is reading this at first I write as if it's a journal and then come back and clean it up. My goal is still to go back to the beginning to whats going on today. Until then, I've basically been getting slowly sick since I was around 20-25 years. I was born with bad knee caps and lived with pain with that from the 5th grade and on, so I've been in 24/7 pain my whole life with some part of my body. In my 20's it was small signs but I didn't let it get in the way.
Wednesday, August 5, 2009
My 24 year journey of living with Lupus, other disorders & 24/7 pain . I wanted to create this blog to share with others who are disabled, healthy, family member of a disabled, ect what life is like for me. I've been ill for around 24 years, the past 5 very bad and the last 1-2 years have gone through things I never thought I would. I have a "Lupus" like auto-immune disorder, the doctors cant determine yet exactly which one so it's classified as a "Undefined Autoimmune/muscle skelton" & "Mixed Connective Tissue" disease/disorder. Thats only 2 of the many health problems but it's the underlining trigger to most of them. My blog will share about pain medication, good pain managment, new disorders I have, my good & bad days, outlook on life, how I run my business, being sober for 20 years and how I've choosen to fight and not give up. I've always wanted to create something like this and after Michael Jacksons death it pushed me to start it. Many people have no idea what affects certain health conditions can have on the body. What a good pain doctor can do for you and should do and how the medications work. I'm hoping to make this a weekly entry once I get it up to date to where my life is today. I'll make a short summary of the last 25 years and what my life was like before the pain/disorder took over. Facts about how 40% of lupus patients test false negative, 60% of Lymes disease test false negative & the diffuculties of struggling to find the right doctors to help. In the meantime I'm also going to try and make this into my own website, a place everyone can read it if they like. Entry for July 24, 2009 Good news, yesterday I went to UC in SF to one of their departments to see why my mouth reacted the way it did to a lip biopsy. During the visit they asked many questions and since it's a well known teaching hospital they are really on top of things. My intentions was to keep the visit focused on my mouth since in past experiences if I brought up all my problems it would "overload" the doctors. Well, not here:) They did all the asking and questions I never expected from this visit. When the teaching doctor came in after his "team" had collected the info he also brought more people in. He then asked questions about my old job and detailed questions concerning the enviroment of it. Since my old job was around a lot of ground metals & toxic liquids he wanted to know everything. He tehn asked about my current doctors, what they are or are not doing, ect.He then looked at my mouth and gave me the medication needed, ect. Then came the unexpected, he said YOU NEED TO BE SEEN HERE, YOU NEED TO BE HERE. GO REGISTER AT UC AS A PATIENT NOW. WE NEED TO FIND OUT WHAT IS CAUSING ALL OF THIS AND THIS IS THE PLACE FOR YOU TO FIND OUT, WE CAN HELP YOU. I cannot tell you how many years I've been waiting to hear those words, how many old doctors told me only a place like UC could help me but I never had a way in, until now. Due to recent chest pains he was concernedI havent been sent to a heart dr yet and didnt like my current Rhruem doctors treatment. I will be seeing all types of specialist there and many "teams" looking over my case. Since this is skipping from my last posting to yesterday I know some of this wont make sence since I havent written "my story" as planned. Yet I'm so happy I had to share this:)My goal is to get as current with my story as fast as I can and let you know where my body/health is today. I'ts not good nor easy but mentally I'm very strong and good natured person and that's the parts I want to share. I run a small business which on some days is so very hard but I keep going. Hopefully soon this will be done so each entry is current.