This Girl is on Fire (not literally)

Hello everybody! I hope you are having a great week, the weather has been absolutely beautiful! I would have like to have spent more time outside this week, but I have been able to enjoy it in small spurts. Not much to update on this week. I am STILL in a flare from my routine TDAP shot 3 weeks ago. I contacted my mast cell specialist, and they told me that it will just take time for my immune system to calm down-- I am not a patient person in this regard, but I know that I need to be.

He also said it would just get better with time, but unfortunately, the past couple of days have been worse. I think that this is because of all of the pollens in the air (I can see a coat of it on the car), in addition to being due for Xolair next week, and the reduction in my steroid dosing. I know I try to remain positive on here, but I am not gonna lie, this week has been pretty uncomfortable. The mast cells cause my skin to flush from head to toe, in addition to itching. If I scratch the itch, it makes it worse and starts to burn. The flushing also makes my skin burn, hence this week's blog post title. The best way I can describe it is a sunburn.

Luckily, I only have had to use the EpiPen once, today, for red pepper flakes on a chicken sandwich that I have had before (they marinated it differently this time). Although I have been uncomfortable this week, this is still a LOT better than before the Gleevec. I haven't had to even think about going to the hospital, and I am actually able to control my symptoms with oral medications. My breathing /airway was only affected in the chicken sandwich incident. Before, I probably would have gone through 3+ epi pens, and not always responded to them. My fingers are crossed that it remains this way throughout the weekend, and my body gets a chance to calm down. In the mean time, I am taking it easy, trying to Benadryl "blast" my system and trying to let my body catch up. The benadryl makes me feel kinda crummy, but it is better than the alternative, hospitalization and steroids.

On a more positive note, my Beads of Courage arrived today! I was super excited for these. Each bead on the string matches a part of my battle, and is a symbol of courage. My bead strand as of today:

And the meaning of each of the beads:
Black- needle stick/port access since 3/1
Magenta- infusion since 3/1
Larger blue beads: each year of treatment (2)
Fish- travel for medical treatment
Bumpy- ankle boot
Rainbow- Physical or other types of therapeutic services
Blue- clinic list since 3/1
Brown- hair thinning

Although adding beads isn't something to celebrate per say, I am proud of my beads, and the fight that they represent.

Last thing for this week, another reminder to sign up for my team for the Superhero Showdown Virtual 5K! It is a benefit for a foundation which helps support patients with MCAS like myself. Here is a registration link:
https://runsignup.com/Race/Register/RaceGroup-355043?raceId=30904
The price goes up tomorrow, 3/31, so sign up now while you can! For those of you in the Bay Area, I am going to try to host a group of walkers and some snacks after. Here is the Facebook event link for that, and please make sure that you register for the 5K AND RSVP on Facebook:
https://www.facebook.com/events/283415038730540/
Since it is a virtual 5K, you do NOT have to be present at the race in Pennsylvania or at the event I am hosting. You walk for 30 minutes, or a 5K, and send documentation to the race organizers (screenshot of a fitbit, treadmill, etc.), and get a medal and a t-shirt. Let me know if you have any questions as far as that goes.

Have a great week everyone!