Blood Test Test Results, Small Road Trip & CFS
I am too exhausted to post anything lately and I am sorry I cannot keep up with any lyme news. But I wanted to post a quick update of what has been going on lately…..
So last appointment with that grumpy old immune doc didn’t go so well but he told me they were doing a challenge test to see if my vaccines as a kid/teen ever responded and if they didn’t respond that can mean I do have a primary immunodeficiency. The doctor said “if your test results come back high then we will not call you for a follow up and DO NOT COME BACK TO ME but if they are low then we will call you for a follow-up and do more tests”. Which is pretty rude to say “don’t come back to me” instead of saying “I will still try to figure out what is wrong with you”.
My test results all came back very low. They tested me for pneumonia vaccine, diphtheria, and others. They all showed that none of these vaccines responded and thy did not work. I think the range was 3 means you were healthy and the vaccine worked,1.5 means you responded and have a good immune, 1.0 means you are weak and it most likely didn’t respond, and lower than .5 means you have no immune and the vaccines didn’t work (or something like that). My tests showed .25 which is 1/4 so that shows me that I have no immune and the vaccines didn’t work.
So I am waiting on a follow up call and never received one. So I called today and made myself an appointment so the doctor can explain the tests to me. Plus I am going back on IVIG on my own before I see the doctor because I can’t wait on them forever. What worries me is when I had elderly pneumonia at age 21 it nearly killed me and the doctors all said if I get pneumonia bad again I will not survive mos likely. Then now I find out my pneumonia vaccines all failed.
I was able to leave the house for one last week. I am an artist at Gallery 85 (Vernon Davis NFL Owns the gallery). I do art to distract me from the pain. Vernon was kind enough to see I had some talent and let me sale my paintings in his gallery so half goes towards my infusions/medical bills and the other half goes to Vernon’s foundation (charity). I received an email asking me to send 9 or more new prints asap. Shipping them costs a lot and takes too long so my dad said he would take me to the Gallery and on the way we would visit the 49ers new stadium.
The Gallery is 2 hours from my house so I wanted to go but I knew it was going to take a lot out of me. I can’t even get in the car to go down the street I get too car sick. So of course the only day we plan to go we get our first big rain storm and there were accidents all the way there and back home so there was a lot of traffic. We arrived nearly late for our stadium tour and museum walk. I tried to make the best of every moment and bond with my dad over our favorite football team. I had a blast at the stadium but I don’t think I will ever get to go back or go to a game, I will explain why soon. We were pressed for time so I had to rush through the museum and couldn’t read anything or see much. There was an amazing 18 min video to watch when you first walk in but I didn’t have time to see it. So it was fun but we had no time to enjoy it.
We rushed to the gallery which was 15 minutes away before the employee left. Luckily we made it just in time as he was packing up to leave. The employee turned out to be Vernon Davis business partner and ex football player. He knows Victor Cruz (NY Giants) so it was nice to meet him. But I was very sick and pale from what my dad told me. I saw some of my art in the Gallery but I don’t remember too much. I can only remember bits and pieces from that day or I would have ore to tell. So we headed home and 5 minutes onto the freeway and I start puking out the window. My head was hurting so bad and where my c-spine enters my skull I felt like someone was pulling on it as hard as they could like it was being ripped out of my head. My poor dad had to keep pulling over in bad traffic so I could vomit.
I do remember puking and seeing a lady next to me with her eyes wide open and she was swerving and yelling at me. hat made me laugh although I was crying in pain. Before I started puking and getting sick I took all of my usual meds and even extra anti-nausea meds. Nothing seemed to help. My usual recoup ratio is 1:3 (1 day of leaving my house equals 3 days of bed rest and recouping) but this is day 8 and I am still very exhausted, more pain than usual and extra symptoms. So after the 3 hours it took to get home in traffic my dad and I both said “we are never going there again”, although we had a great time otherwise. I cannot do the car rides.
Chronic Fatigue Syndrome (CFS)
I have no idea how I am still writing but I am. My CFS has been so bad lately that I can barley pick up my phone to look at it. I haven’t had much time to do my art work and tat is my extra income on disability. I am so exhausted I can’t even talk some nights or follow a TV show. My whole body feels like I am in a sleep coma and can’t get out of it. My limbs are so heavy, the usual CFS stuff but for tose who don’t know abut CFS it makes you very tired. So that is why I have been quiet lately, well that and my best friend (bond sister) is doing very bad and hanging on. Plus my ex girlfriend pushed me away again a few months back and she is struggling but she won’t let me help or be a part of her life. She told me she loves me and cares about me so much that she doesn’t want to be apart but then she pushes me away for no reason. I miss my sis and my ex a lot and they are they ones who make me smile and make my day besides my little buddy Dom. I will try to keep up with the blog more soon.
Don’t ever give up. The road may be a long one but we all have each other and we have the will power to get through this. Stay strong my friends and keep on being chronically awesome!