Post date: Jan 13, 2020 9:19:12 PM
Happy New Year to my mold warrior family and all of those looking to/for help, support, and Positive Vibes. Truly grateful for each of my Positive Vibing Mold Warriors! Despite having to switch back from SQIG, weekly infusions via needles in the abdomen or outer thighs, back to IVIG, twice monthly infusions via IV, my respiratory systems were wrought with infections this fall and early winter. Within hours of my infusion on December 24, 2019, I began to feeling crappier than usual. Within 18 hours I had my first trip of many to the local emergency room over these past two weeks, with irregular heartbeats, shortness of breath, dizziness, and what seemed like my nervous system giving up. Blessed with my team of experts guiding my treatment, I have in and out of various facilities for tests and treatments while not having to be admitted as that would severely increase my risk of infection. This specialist guided routine will continue well into February, and hopefully will generate some answers along the way!
It always manages to make me chuckle when the ER physician orders yet another HIV test because he simply cannot believe the diagnosis codes, the ones my immunologist has me keep in my phone, are as a result of severe toxic mold exposure and not HIV. I've now tested NEGATIVE for HIV over two dozen times.
As fun and flexible we have to be when we're around uneducated or ignorant physicians, it's been nine years and the battle of acceptance in the General medical community is still taking baby steps, but at least those baby steps are forward! And when it comes to specialty medical communities, the steps have been larger, but we're still not where we need to be. My Toxic Mold Medical Team is strewn about multiple medical systems and three states. Can we say goals for 2020!
I am still blessed to have specialists only a stone's throw away based out of Hospital University of Pennsylvania, aka HUP, aka Penn Medicine. To list all of the specialties I've had to add to my medical team would make even Scrabble blush. But with each new test result or piece of data we add one more useful tool to our arsenal!
I've been asked a lot lately if I'm scared of the unknown, if I'm scared of becoming even more restricted, requiring even more help than I do, being able to contribute even less, and flat out of death. My answer has and continues to be no. Although I stray, I know what my path is and I know I need to stay the course. I have to help those who aren't as strong. I have to be able to help people who are and will be going through something similar, something like this, people who are coming down the pike. I realize I'm not the last one who's gonna have to go through this kind of thing brought about by Toxic Mold Exposure. I will Do this, I will Be this, I Am this. I am only because when I do think of how scared some of my mold warriors are at times, I know they too need hope. They too need prayers and Positive Vibes. I'm not in this thing alone, none of us are. So take a deep breath and tell yourself you can do this. Because you can. However you can make a positive difference, do it. This thing, this life will be better for it.
Spread Awareness. Advocate for this thing and all those who are affected, including you, yeah you, the one reading this right now. We will affect change. We will improve and save lives.
Forever grateful to be this blessed. Endless love, hugs, prayers and Positive Vibes.