Friday, September 20, 2013

Health Update - Denial? Feeling Foggy

Yesterday felt surreal. I had to wrap my brain around new test results and at the same time say goodbye to my therapist who is being transferred out of my area. Second time this has happened mid therapy and it's sort of annoying and scary. BUT in some ways it is good, because a new therapist brings fresh eyes on the situation. So next thursday a new person will come to my house. I hate meeting new people. And my home is my sanctuary. But I realize I need help coping with these health issues.

Yesterday I was in a daze while I said goodbye to Mikaela, a wonderful person who has helped me deal with the uncertainty and terror of living on the edge of anaphylaxis. I also saw my general practitioner for a sinus infection from hell on top of all the other stuff and talked with her about my test results. And an urgent situation happened where a friend needed a place to crash. So a very sweet man temporarily moved into our house. Also, he, some other friends and I all found out that a local organization is in a bit of trouble and needs a hand getting rid of the bug infestation from hell. So we were problem solving. And all this while in a fog. It didn't seem real until I woke up in  a state of clarity this morning.

I think the reason for the fog is that the day before yesterday, I was given my first really non-normal test results. My PGD2 test came back positive/prostoglandins are a little too high. This apparently confirms that I either have MCAS, MCAD or Mastocystosis. In a way I felt like he was telling me what we already knew, but I realize now that he was telling me he wasn't sure until he saw this test result. In normal semi medical speak, it means that either my mast cells are too plentiful or too abundant. To simplify that further it means that the cells in my body which are supposed to attack disease and protect me from allergens are either being over create or are misfiring and shooting out too many hystamines when they're not needed. Hystamines are supposed to protect our body from allergens and irritants, but *my body* is recognizing MANY things as allergens or irritants to varying degrees from annoying itching to anaphylactic shock.

This morning when I woke I realized that I  had been moving around in a bit of a haze yesterday and the day before. I had a long confusing talk with Dr Lewis when he called me in same day (Wed) for a consult. Lots of numbers and big words and possible courses of action. The words that my family remembered are "it's not cancer and it's not an infection" and the words I got stuck on are "so it is not urgent and you have time to sleep on it." I think in part because I've been told some kinds of mastocytosis ARE cancer, and I know the treatments for too many mast cells are basically chemotherapy or symptom management. Neither of which are great or perfect. There are treatments which I am currently not getting which could be more likely to be given if I have mastocytosis. There are other treatments which would only be given if I have mastocytosis.

September 15, 2013 Empowerment
So, sleep on what? Well the decision  on treatments really. The decision between options.  Should I go ahead with a bone marrow biopsy, or bone density scans or just wait for the results of a GI biopsy sample being sent to Rochester Mayo for proper staining, or just wait, play food roulette, and see if I have another major reaction and have the ER do the tests Dr Lewis has ordered. I still have minor reactions daily. I think my tooth paste is making me react. Rice made my mouth tingle just sitting in my mouth, and by the time the benedryl started working (20 minutes) I had developed itchy eyes, and was starting to get hives and my lips swelled a bit. Carlie sat by with an epi pen in case I shocked. Then When I tried to put vaseline on my cracked lips last night, my mouth then thraot and ear canals got itchy.  But I was feeling pretty non reactionary when I woke and more clear headed than I had in a while, when I realized all of the above, and then I brushed my teeth and my throat went back to it's almost constant slightly swollen feeling. So I need anew tooth paste now. Is this what I'm going to live with forever?

I woke this morning in a state of horrifying clarity and realize the last 2 days were a blur. I think I was in a bit of denial at the test results being important. I guess before those test results came in they were still holding open the option that it's all in my head or some other cause?

My general practitioner's assistant gave me a referral to a dermatologist for my back "freckles" Which swell and itch when irritated...or whenever they feel like it. Apparently they are thought to be cutaneous mastocytosis, something which 20% of systemic mastocytosis patients have. And if a skin biopsy reveals that is what they are it still doesn't make any of it go away, tho maybe it will provide for better treatment. A bone biopsy could have 1/6 chance to catch the over plentiful or misshapen cells which are causing some or all of my health problems. Of course if it doesn't catch it, there is a 5/6 chance it missed and I still have it, and they would probably want to do more bone biopsies if my symptoms continue.

September 18, 2013 Passion
Not really great options, but everyone in my life seems to agree that I need to get the bone marrow biopsy. A nurse I trust said that if they do find that I have systemic mastocytosis there are treatments that can only be given to patients with 100% confirmation which is only possible with bone marrow biopsies. And those treatments are pretty horrible. Gleevac and other drugs which are basically chemotherapy to kill off the mast cells. I am looking into naturopathic/homeopathic methods of dealing...and symptom management... but am watching friends deal with various horrifying treatment plans and seeing how it goes for them an wondering is there a possiblity of life without all this pain and confusion? Life without illness? TMS for a cure sure thinks so: they are having a  big conference next weekend to discuss all they are learning about these diseases, possible treatments, possible cures in the future, etc. I was invited to attend with a friend who is driving out there but I just can't see the safety of going to a hotel full of possible triggers when I'm still not properly treated and thus still so reactionary.

I guess all I can do is call my doctor, schedule the bone marrow biopsy and take things one moment at a time.

Some helpful links about anaphylaxis and mast cell disorders:

All artwork is created by Sean-Michael Gettys copyright Peace Full Cretions and request to use is appreciated.

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