Lisa
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Joanna, without a doubt STRESS is a MAJOR trigger for us and this is due to the fact that the stress system has a number of mediators which are direct mast cell degranulators. This is why physical stress as well as emotional/pscyhological stress are very important to keep under control. And this is also why extremes of temperature are as well for the body sees these as a threat and by seeing it as a threat it triggers the stress system which in turn triggers the MC. So, as you can see, anything which is going to trigger the stress sytem is going to make you "feel" it.
As to the heat, if you must, get a t-shirt wet and wring it out well and put it on over you bra and stay in front of a fan. I live in Brazil and this is my summer survival gear. And yes, Iīve got 3 children, sons, and being a consciencious mother, I am careful as to how things appear and so I make sure that the T-shirt is dark and wonīt cling. Or I am in my bathingsuit with a wet-tshirt over it. This is surival gear we are talking about here and since I donīt have AC in my house I must find other means of keeping COOL. not cold. I live with fans going all the time and even at night, if itīs too hot I will get a wet towel and sleep with that over me. If I donīt, Iīll go into anaphylaxis itīs that simple! And where I go, the fan goes with me, Iīve got to have constantly moving air on me in the Summer, whether Iīm cooking, sleeping, watching TV or working in the house or if Iīm at work in front of the computer the fans must be always on the go. And if I begin to feel bad in some way, then if it doesnīt pass within about 10 minutes, itīs time for extra antihistamines then. Itīs the only way I can manage to keep stable. Otherwise, Iīm always taking a beating.
So, with 5 kids, PEACE is also a big issue. There are times, Joanne, when youīve got to find time ALONE - TOTALLY ALONE. Just the commotion that a big family gives is stressful to your nerves - the sounds, the needs, the just living of life. You must find time to be alone and to just STOP especially when you are reacting. If you are reacting, then keeping your bodyīs physical activity down to a bare minimum is essential!!! Anything which causes you extra stress, be it physically, emotionally or psychologically is going to cause MC degranulation. So, when you are reacting, you must just force yourself to STOP. So, if that means getting your kids to do some cooking, be it grilled cheese sandwiches or heating up some soup or whatever, and giving you the day off, then PERFECT! This is what teens are all about, wanting to become INDEPENDANT and the more independant you can help them be, washing their own clothes, cleaning the house, making meals when you are sick, this is GREAT for not only are you teaching them to be responsible, but you are helping them to take care of you when you are needing it. A win/win situation!
Oh, and one more thing. Joanne, we all know how tight things are and Iīm one of 6 kids and have 3 of my own, so I understand how tight life can get. I know that you said you lost your health insurance, but sometimes itīs worth paying privately for a doctor and I think that if you speak with Dr. Lichtenberger, since he is closest to you, he may help you to work out a means of paying for his fees. Another thing is, Joanne, this is a RARE disease. I know that itīs not easy to accept that not just any doctor is going to know about masto, but they arenīt. You are making an INVESTMENT in your health and well being and even if it is a couple hundred dollars to have to plunk down, would you not do this if it were one of your kids and donīt you end up spending in a blink of an eye that much money on silly stuff at times? Besides, if you speak with the doctor, explaining your situation to him, you give him the opportunity to see what he can do to help you for there is not a person in the world who is not feeling how tight life has become!!! I was so blessed when I had doctors at Cornell University, upon hearing that I had no insurance to be operated on within the US decide to totally wave all of their fees and donate their work in order to save my life!!! The senior surgeons of the university chose not to accept my case for surgery so my surgery went on down here in Sao Paulo, but I was so blown away at the incredible generosity and graciousness of Dr. Basson and his colleagues who were willing to operate on me for FREE!!!!
So, even though you may feel embarrased by your situation, donīt be ashamed for itīs nothing to be ashamed about. You never know how the doctor may respond. He may not be able to wave his fees, however, he may make it easy for you to pay him and still be treated by him. These doctors, Joanne, they really do understand that we go through YEARS of suffering because nobody recognizes the disease. They also know that we are very often in serious danger due to the risk of anaphylaxis. We need help NOW and YESTERDAY and many of us instead go through years of crisis after crisis without any relief or attention and we must have help IMMEDIATELY.
So, please, reconsider waiting to go see Dr. Lichtenberger. Heīs the closest to you and he may be much more receptive of you than you think.
Lisa
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