Not QUITE the start I was hoping for...

     Hi everybody! I hope you all had a relaxing weekend and are enjoying watching the lat few moments of the Super Bowl! So, as I discussed in my last blog post, I finally received insurance coverage to try Gleevec (imatinib), which is an oral chemotherapy medication which has shown success in some MCAS patients. I began the medication this past Wednesday. I was already in a pretty significant flare, as I was more than a week out from my last dose of Xolair (the injections I get every 2 weeks which also seem to stabilize me). However, my reactions began to get to a point where I could no longer control them at home with EpiPens, oral Steroids, and Benadryl. I had a reaction on Wednesday, used all of my home meds, and still had swelling. I was already at the infusion center getting IV Fluids, which I get three times a week through my mediport, so I got an extra dose of IV steroids. For those of you who don't know, the mediport is a disk that was surgically implanted in my chest that allows quick IV access without having to use my veins in my arms-- instead they insert the needle into this disk and are able to draw blood and give me IV medications, even ones that would burn normal veins (WikiLink Here). It has been a total lifesaver for me so far, since I got it placed in November, because my veins were getting scarred, and roll/burst due to EDS. I get it accessed (poked) three times a week for my saline infusions, plus when I am hospitalized. It in theory can remain accessed (having IV access at home), but I currently do not do so due to infection risk and trying to live as normally as possible.
     Anyways, back to this week-- my IV dose at the infusion center gave me relief until Thursday, where the same thing occurred- another EpiPen, oral steroids, and Benadryl. I went to Urgent Care, and the doctor told me that it appears that my GI tract is swollen from the mast cell activation, so I was likely not absorbing the oral medications, likely including the Gleevec. She recommended I go to the hospital for IV medication, but since I am stubborn and hate the hospital, I went back home to ride it out.
     On Friday morning, I had another saline infusion scheduled, and got another dose of IV meds. By Friday, I was exhausted and frustrated. No medications seemed to be "sticking" on me. However, I still wanted to stay home really badly, so I tried to ride it out. By Friday night, I had tried everything, including breathing treatments, so I made the decision with my family to go to the ER. I was admitted Friday night, and remain here for IV Fluids, Benadryl, Steroids, and other antihistamines around the clock. We are essentially waiting for the inflammation in my body to calm down so we can get to the point where I can absorb the Gleevec and actually give it a chance to work.
    Although this was certainly not how I was hoping the Gleevec treatment would start, I am not giving up yet. I am scheduled for Xolair Tuesday. I am hoping that once I get the Xolair, and with the meds I am currently getting, I will be able to actually give the Gleevec a chance to work. I should be able to tell if it is working in two weeks or so. Not going to lie, being in the hospital SUCKS. Its loud, there is no privacy, its uncomfortable, and I am the youngest person on the unit by a solid 20 years. However, if this is what is necessary to get the Gleevec to work, I will absolutely do it. I am hoping that it isn't the Gleevec that I am reacting to, but rather the Xolair wearing off and the Gleevec beginning to interact with the mast cells. If it is the Gleevec causing the problem, I will have to go back and talk to my doctor to see if I can try the brand name drug instead of a generic, which would involve fighting the insurance again, or if I need to give up on the Gleevec entirely. Fingers crossed the Xolair will let it work.
     Today seems to be a better day than yesterday-- the swelling is less, and not impacting my airway-- only itching in my throat, no swelling. My asthma symptoms are gone. So, I am hoping for discharge tomorrow, and if not tomorrow, then they should release me Tuesday for Xolair. I have to give a shoutout to my family-- they have been incredibly supportive and helpful for me. They have been visiting me daily, bringing me clothes, food, etc. I have been entertaining myself with rug hooking, online tutoring, and working on my online class. This has reaffirmed my decision to stay home for the semester-- there is no way I could have done any of this at school. I am working as hard as I can to maintain positivity, and stay relaxed, because I know that being frustrated won't help anything. In the mean time, that means rest, relaxation, food, and waiting for the medication to do its job. I apologize for my semi-rantish post, but it's my current scenario, and my current "job" is to try to make the best of what I can out of it. Getting to write it here helps me process it and assure myself that I am doing the right thing.
    Anyways, I will post again some time over the next few days, I don't want to get too annoying by posting super often. I hope you all have a great week, and I send my love! Again, as always, if you want to receive my posts to your email, please hit the "subscribe" button.

Little bit of hospital humor to leave you with, was entertaining for 10 minutes today-- I went for a walk, and this was happening in the hallway. These are TUGS, automated robots that go around the hospital. Today, 2 of them got stuck, and were in a stalemate for 10 minutes until IT could over ride it. They also talk, and were telling each other they were in the way.