Allergic to the World

Mastocytosis Flare Recovery Month 11 Day 12

Food

Since being diagnosed with mast cell disease in 2007 I quickly learned that drastic steps were needed to keep me alive. It is not normal to experience severe allergic reactions to virtually anything I come in contact with. Foods were the first area we made changes since my doctor took me off all food by mouth and ordered a special type if IV nutrition called total parenteralnutrition or TPN for short. When I started back on real food I was advised on very specific foods. These foods were based on Dr. Miner’s research of the least likely to cause a mast cell reaction. I was also advised to get the purest food I could find, ideally organic. I was not a big believer in organic products but I was so excited to be eating after almost a year that I did what I was told. As time went on and I added more items to my diet, I got braver. I also became dissatisfied with paying more for organic food that looked exactly the same as conventional food. I had been able to eat fresh organic peaches for quite some time. The $3 /lb. for organic made the conveventional peaches on sale for .99 lb a temptation I could not resist. Proud of my savings I quickly gave my fresh purchase a try. The first think I noticed was that these peaches were not as flavorful. With in a few minutes, I noticed the all too familiar symptoms of an allergic reaction coming back. How could this be? They looked exactly the same. My body was telling me they were not the same. Over the years I would occasionally test the waters to see if I would get the same reaction to other food items. The response would be the same, although sometimes it would take a couple of times eating something to have symptoms. I found I was able to add more foods to my safe list when they were organic. I was learning that organic foods were grown without chemical based fertilizers and pesticides but rather more natural products are used, similar to the way our grandparents would have grown food.

Change is coming

Over the years we have applied the concepts of reducing the chemical influences in our lives as possible. I will be sharing some of those with you in the future. Today, I want to share with you a couple of specific things that have made a big difference, including our most recent change that has been very significant.

Water

For most of my adult life there were some minor symptoms that doctors could not explain but one of my first major symptoms was how I would feel after taking a shower. I would shake and feel dizzy almost like I was experiencing low blood sugar. I would also turn bright red and feel completely exaused. No one could explain this to me. My allergist suggested showering and shampooing at night would be better for my health. This process would wash away the allergens of the day. Coupled with allergen covers on pillows and mattress and having fresh sheets atleast weekly would allow for an allergen free environment for the many hours of sleep each night. When I was in the hospital in 2007 receiving my first feeding tube I remember such intense kidney pain, which I now know is one of my reactions to the wrong kind of anesthesia, and debilitating weakness while taking a shower. My husband was amazing and helped wash my hair while I sat in one of those shower chairs. I could not raise my hands to shampoo. Sitting was exausting all by itself. We knew one of my major triggers was heat so we knew with each shower I was going to have some reaction. We had to keep the air conditioning at 65-68 degrees to avoid reactions so showering with any warm water at all would be problematic. Body wash was also a no-go. Everywhere the soap would touch my skin a raised blue welt would remain. The solution was cooler showers with no soap and collapsing into bed. At the time, I was bed bound so it’s not like I was working up a sweat. As time went by, I was able to add body wash back into the routine but showers have always remained problematic. After talking with many mast cell patients I know many have the same problem. We plan on the fact that nothing will be accomplished after showering in the evening.

Chlorine

Flash forward seven years and welcome this little gem. It is a shower head that has as built in water purifying filter. It removes many things including chlorine. From the first time I used this I had just as much energy after the shower as I did before. My husband commented that I was not red at all. My hair was soft and I didn’t remember to put on lotion for at least 15 minutes. What I previously thought was dry itchy skin was actually the chlorine in the water and the nightly reactions we attributed to a heat trigger was actually chlorine. This discovery has not only been helpful in this area but has helped us realize my sensitivity to chemicles in all areas of our life. We never in a million years thought the water might be a problem. When you react to tap water I guess you are truly allergic to the world. I have spent the last several months looking at my history and that of the hundreds of other mast cell families I have talked with and I have come to realize that any time chemicles have been removed positive changes occur. I have been re-evaluating and testing everything.

Hair loss

I think I have shared, for months now I have been loosing my hair. Not just a little but by the handful to the point of literally going bald. My hair was long but the top of my shinny head was sparsly covered. Everywhere I went I left hair behind. It was like my own personal fairy dust. Even with daily vacuuming I left blonde hair balls all over my house. Hats have been helpful but I honestly considered shaving it all off just to be done with it. There is something mentally draining at seeing the dysfunction day in and day out. I know my friends and family who have gone through cancer treatment can relate. I did some reasearch and wondered if perhaps my shampoo was to blame. I switched from my popular salon shampoo to one made with more natural ingredients and after about 3-4 weeks I have a whole new crop of hair growing. I was so excited you have no idea. I didn’t have to shave my head but I did get a new haircut.

Soaps

Aloe Vera Gel –

https://www.mountainroseherbs.com/products/aloe-vera-gel/profile

Christal

The information contained on this blog is not intended or implied to be a substitute for professional medical advice. Please seek the advice of your physician regarding treatment for any medical condition.