Well I am back on a plane headed back to Knoxville to head to a meditation retreat with Jardana Peacock led by Lama Rod Owens who I knew in another life. I finished three days at National Jewish Health finishing some tests that they wanted to run and doing some work with the Largoyngolist, Speech Therapists and talking to a nutritionist.
So here is the main skinny - I have done all the test around my lungs/asthma and have some test results but not some of the biggest ones. Hopefully they will come back before Christmas because there is no way I can make it like this before then.
Thanksgiving was horrific, the Ministerial Fellowship Meeting was wonderful in terms of my allergies/intolerances but the two times I went out to eat i had major reactions and the second one forced me to change my flight.
The asthma is the breathing out challenge and the other challenges in terms of breath is the fact that I have vocal cord disruption which is about breathing out along with a tremor. My vocal cords, larynx, and voice box are completely inflamed and closed. Talking for any length of time is hard because of it and it means that I am always out of breath. My fast and loud talking also doesn’t help so I am working to figure that out. I saw a Laragonolyist that showed me video of the tremor and the inflammation which was interesting.
I have a ton of exercises to do to massage the layrnx and the upper body, to help with the VCD (open throat, relaxing the throat, voice stability and resonance) and that I am supposed to do while eating since food is getting into my windpipe. To help with this they are sending me to Vanderbilt Hospital to work with the Speech Therapists and Orgonlyists there and they are some of the best in the country. The hope is that speech therapy will work but if it doesn’t I have to have surgery so we are going to pray the therapy and exercises work. The exercises take up a lot of time and have to be done all day long. I also have to limit the amount of talking I do and take rest breaks between meetings and after talking for awhile.
The other thing i did around the VCD was an irritant challenge - I was in a room with a scented dryer sheet for 2 minutes and then took a 2 minute break and then for 30 seconds to work on my exercises to help deal with the throat closing. The exerises work and that is fantastic. Here is what I learned. If it comes on quick and the exercises help the voice come back and the ability to breath out quickly it is VCD. If the tightness is coming form the chest and the exercises are not working and its been 4 minutes it is asthma. They can happen at the same time so first you do the Vocal Cord Disruption exercises to see if that is it and it clears up and if if it does not time to move on to the Asthma Action plan. The other key thing I learned is that I am only supposed to be exposed to the things that trigger me for 2-3 minutes maximum and then I need a 2-3 minute break. I am also supposed to have a safe room or place so that if people do have on scents I can recover. I have been spending way too much time in spaces that trigger me which leads to me having massive consequences.
The first test I ddI was a stress test for my heart because they noticed some abnormalities around my heart and want to make sure that the shortness of breath is not also due to a heart problem. Those test results will come back and we shall see. I met with the nutritionist who was helpful on the food tip and also told me that i had to take 1000 mg of B12 and she has me tested for vitamin D deficiency which she thinks i have. She was also worried about calcium since i am on so much prednisone but my calcium levels were good if I remember correctly.
The other test that I did was a steroid pharmacokinetics test that measures two things. The first is they look at 4 different steroids and see which ones you are resistant too and which ones you are sensitive too in terms of your lymphocytes. The second test measures the concentration rate over the day to see if it has normal absorption and normal metabolism. I have the test results for the first one “in vitro” but not clinical. The tests so far showed two things. 1. At the maximum dosage all four of the steroids suppressed the lymphocytes. 2. My lymphocytes were sensitive to dexamethasone and budesonide, with log IC50 values comparable or lower than those of similarly severe asthmatics; in contrast, they were relatively insensitive (or resistant) to prednisolone and fluticasone. This may in part, have contributed to my suboptimal response to these steroids noted in the past. I use budesonide every day as a rinse to control my sinus inflammation which is the best thing for it. My assumption is that they are going to switch the steroid that I am on so that i need less to have an impact which is the point of this test.
It is all overwhelming and is a full time job trying to figure it all out. I am going to take some concentrated time to just meditate and pray over it all. The meditation retreat this week is about collective resiliency and mourning so hopefully that will give me some good time to really hold all this, figure out some key changes that need to get made, and let go of some things that I think I need and instead focus in and be real with myself.
