Saturday, July 11, 2015

"The Last Piece of the Puzzle"

In November I started a new job and my life got exponentially busier, so I have not had time to write, much less breathe! I thought I needed a new update here though for the curious souls. I do not have cancer.....yet(sigh of relief can commence). For most of my life I have had random hives, I have found that I am allergic to all kinds of things, even things I was not allergic to before and I struggled to control the symptoms of my multiple conditions. I never really questioned it because, to be honest, my whole body seems to be in a weird state most days. Finally I got sick of it, I had a rash on my skin that would not go away, it was flaring up one day and I went into urgent care, because of course every time I went to the actual doctor the rash would not be there. The urgent care doctor looked at my skin brushed over some parts and exclaimed that I have extremely odd skin patterns and reactions.  He stated it was an allergic type of reaction and he wanted to send me to an allergist. My first thought was huh allergist for a dermatological item, but okay might as well go. The urgent care doctor said I should probably get my allergens retested anyways, so I thought it wouldn't hurt, since I haven't been tested for anything but metal allergies since I was a child. I did some quick research and found an allergist that I thought would be comfortable taking me on without pushing me out the door and telling me I am way too complicated. I went to the appointment and started telling him about the rashes and my long complex medical history, he stopped me mid sentence and said without a doubt it is mast cell disorder. He told me that it is common that people with eds, gp, etc also have mast cell disorder, he told me this was the last piece to my medical puzzle. He voiced concern that he felt my type is fairly advanced and told me to see a specialist here at the university as soon as possible. I of course call the next day.......soonest appointment is.....February....ugh. Of course now all the attacks, my heart, my stomach problems, and the other issues just fit. He said that the reason why my medications don't fully work when I am in "flares" is because I am just having tons of allergic reactions that are affecting my organs and joints on top of the conditions already there. I will not lie, I have been stressed since the appointment, the doctor pointed out mast cell overloads on my skin (which basically just look like moles) and He also talked about the potential for cancer, specifically an aggressive type of leukemia. Naturally along with my other conditions, this one is very rare and only a handful of doctors know about it and even treat it (which explains the long appointment wait). Because of the rarity and the complexity of the condition, the doctors who treat the condition are oncologists/hemotologists. I am thankful that I do live here in Minnesota at this point in time because one of the leading researchers in the field is who I will be seeing. Ironically, I have been having lots of issues in the last couple weeks and landed in the ER and this is the first time they looked at me and said there was absolutely nothing they could do, I had become too complicated. Luckily I went in during office hours, so they called the allergist and he gave them instructions to stabilize me. I actually left the ER that day feeling better than most times I have left.  Mast cell is so difficult because it affects my other conditions, so it made my stomach spiral and I have barely been able to eat since this reaction started a couple weeks ago. When I was brought to the ER i was having an allergic reaction and was hypoglycemic at the same time, luckily the steroids have been quelling the allergies, so now I am working through the stomach issues to help recover from the mast cell hit, back on a liquid diet and working on my sugar. It is a challenge, but I am working through as much as I can as carefully as I can. Just like everything else I have been through I know I will come out on top of this, I am fighting so hard to keep it under control, which is difficult as I am getting worse with age, but I know I can do it. Don't ever count me out because I will rise from this stronger than ever. <3