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Mast Cell Beach Experiment Day 20 Clean Air

09.30.14

Today I took my parents to airport and picked up my friend Nicole to be my next babysitter 🙂 Update on a couple of weird new things going on. The smell of food cooking over the past year has either been neutral, meaning not good not bad, or has instantly made me start gagging, usually depending on the exact food. Over the last few days food has started to smell good to me. Then today , for some reason, I am craving Reese’s Peanut Butter Cups. Although I know good and well from past experience what will happen to me should I give into these temptations I think it is a good sign that my body is beginning to see food a little differently. Hopefully it is preparing itself to start working again.

Prednisone update 14.5mg/day

Travel Accessories

I have received many questions about a couple of the items I brought with me to the beach, specifically about my air purifier, the masks I wear, and my vacuum. I am completely aware of how strange it sounds to most people that I travel with an air purifier but I live with a strange disease that make it a necessity. Many of the questions I have received are from others who have a mast cell disorder and have been unable to travel for years or from people who just want to live a healthier life. Many of you are planning trips to the beach and other locations to see if it improves your health. I will be doing an end if trip review and FAQ post at the end of the beach experiment so send me your questions and I will try my best to answer them. For today I will talk about these products that make travel possible for me and I hope in sharing this that you too will be able to travel soon.

Triggers

We have already talked about the importance of clean water in our first in an ongoing series on reducing chemical exposure. You can read about that here if you missed it. As a mast cell patient I need to control any and all known triggers. Triggers are anything that can cause the mast cells to dump their hundreds of chemicals into the blood stream. Everyone has mast cells, they are part of our immune system. When you come in contact with something that you are allergic to or your body thinks is an invader, your mast cells get agitated and that is when the chemicals are released. Once the chemicals like histamine, heparin, tryptase, and prostaglandins flood your system you have allergic type responses such as sneezing etc. When you have too many, like I do, or they are hypersensitive this chemical dump can make you very sick and it can even be dangerous; think peanut allergy. Avoiding triggers is of primary importance.

Mast cell triggers
What looks like this to some people….
Mast cell clean air

Feels like this to come one with a hyperactive immune system.

Clean Air

Last year, after experiencing anaphylaxis for no apparent reason that did not resolve, my doctor ran all sorts of tests. Something like 13 vials of blood were taken. Among the tests various environmental allergies were tested. A couple tests came back positive only one of which is a problem in Oklahoma, the dreaded cedar! Cedar is unusual as it pollenates in the winter, typically November through March where I live. As Cedar season was approaching and knowing how bad the preceding years had been, we knew a change needed to be made. We needed to order an air purifier but which one.

Types of Air Purifiers

I researched and read reviews until I thought I would go cross eyed. I knew from the past that there are several types of purifiers.

  • Ozone- not so good for myself or other mast cell patients I know.
  • Ion- very expensive but quiet and had good reviews. I ordered one of this type first. From the moment I turned it on it made me sick. Literally, I became very nauseated. After repeated attempts with the same response, we sent this one back.
  • UV lights- mostly designed for whole house central air and heating but some small portable units. I found inconsistent reviews as to their effectiveness.
  • Filtration- These varied greatly from standard air filters, HEPA, HEGA, charcoal, and so on. This is what has really worked for me and my family.

And the Winner Is…

I chose the Austin Air Jr. as it was going to be in our bedroom. I love it!!! Filter costs were reasonable. This little guy is amazing and has made a big difference. We have taken it on trips with us “just in case” and have needed it every time. I won’t travel with out it. I love that it has 4 different types of filters including one for fragrances which had been a life saver in hotels where there was a heavy smell of cleaners, perfumes, etc. you can read more about it here

 

Or here

http://www.achooallergy.com/austinallergymachine.asp

Right now Achoo allergy is having 10% off with code fall14
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They also offer a bigger unit if you have more square footage to purify.

Mast cell mask

Masks

I have a love hate relationship with masks. I love that I can get out more when I use them and I love that I don’t usually get additional swelling when I wear them but I hate that people point and stare. I just had to choose to let that be their problem. I try to use those moments as educational teaching moments when the times arise. Surprisingly, I get a lot of questions about if I am a prepper and it’s the end of the world or if I’m going to rob the store? What?? I need a funny ice breaker in those instances. I’ve thought about “No, I’m a superhero and this is my disguise”. I use these N95 masks they are rated as surgical, they have a vent which makes them TONS cooler on your face, and filter 95%.

Vacuum

I vacuum everyday at home. It really helps keep the allergens down. Here at the beach and with my pooch miles away at home I don’t have to vacuum everyday but every couple for sure. I don’t normally take my vacuum when I travel but being gone a month I knew it would be needed. The biggest thing about vacuuming, you need to make sure you are not just recycling the dust. By this I mean you suck it up, it goes through the filter, then it comes out of the back of the machine to simply become airborne again. I have had a lot of different machines specifically made for allergies over the years. My Dyson is the best, hands down, and I will never own another brand again! My family used to have to vacuum for me while I was gone or on the other side of the house. With the Dyson I can do it myself with out sneezing and it is very light. It is very powerful. When I got it, I did a test. I ran my old vacuum first and then ran the Dyson. In theory the floors were clean so I should not have picked much up. I filled the tank one and a half times. I was happy and grossed out all at the same time.

These products have been an investment in our health and my whole family has noticed a big difference. The first thing people say to me when they see the price of these items is that is too much money. It has taken sacrifice to make these purchases and we have had to go with out a lot of other things but we made the choice to try and improve my situation and it works. I use them at home and travel.

Hope and healing,

Christal

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

Christal
Filed in: beach experiment | Life with Masto | Mast Cell 101 | relapse

Beach Experiment Day 14 Genetic Testing

09.23.14

Not much to share beach wise today, it was rainy and gray. We spent time on the balcony and we hung out around the condo just taking it easy.

Genetic testing

I thought I would share something that I did before I left. Over the last several months the idea of genetic testing has repeatedly come up seemingly everywhere I go; in conversations with several unrelated people, online, and with various medical people I know. You can get extremely detailed information. By simply ordering a kit, spitting in a tube and mailing off to the lab you will receive raw data about your DNA and a variety of family ancestry information. This data can then be run through various apps, some free some paid, to receive an interpretation of the raw data for things like diseases, supplements needed, drug metabolism, how well (or not so well) some of your body processes are working, and all sorts of mutations. Since it is your DNA you only need to do the testing once in your lifetime.

If you or your doctor are looking for something specific, the blood testing through their office will be a better fit for you. If you want to see a host of information from all those areas I spoke of previously, then a kit like this may be for you. I will do another post in the future about the results, but I will say, I found the them to be very accurate.

23 and Me

The kit I uses was for a company called 23 and me. The kit is $99 but if you have been diagnosed with Mastocytosis or another Myeloproliferative disorder and agree to let them add your DNA to a data base to help find drug treatments or a cure, it is free. The first thing you do is go online make a free account and order your kit. You fill out some questions online and then wait for a few days. You will get an email when your kit is on its way to you.

This is what it looks like when it arrives in the mail.

Don’t forget to go online and register the kit to your specific account or the sample will not be processed.
The instructions are very good.
The kit contains everything you need.
You don’t have to fill up the whole tube, just the amount between the lines. When you are done, snap the lid closed. Place the tube in the plastic bag and seal the top closed. Box it back up and pop it in the mail.
The kit comes with prepaid postage already applied.

Now comes the hard part, waiting for the test results. In about three weeks you will know more about yourself that you ever thought possible.

To order your kit you can go to www.23andme.com

Or to participate in the Myelopoliferative Neoplasms Reasearch Inititive and receive a free kit go to

https://www.23andme.com/mpn/

Hope and healing,

Christal

 

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

Christal
Filed in: beach experiment | genetic testing | Mast Cell 101

Mast Cells & Chemical Exposure

09.09.14

Mastocytosis Flare Recovery Month 11 Day 12

Mast cells & chemicals

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.

Mast cells & chemicals

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.

Mast cells & chemicalsWater

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

Dishwasher detergent that previously took my breath away has been replaced with a chlorine free alternative. My body wash and yummy smelling hand soaps had so many ingredients I could not begin to pronounce have been replaced with this simple unsented liquid castile soap with a little extra pure aloe vera gel in foaming soap pumps.

I have tried so many things and I have found what work for me is organic & low toxic ingredients. Over the next few months I will be sharing the progress I have made. I always get tons of questions about where I  buy the various products that have been helpful.  I  do almost all my shopping online. For your connivence, I will provide links at the bottom of this post to the items I personally use.  I mostly use Amazon and love their prime membership which allows me to get free two day shipping. They also have a free 30 trial if you want to check it out.

Living with a mast cell disease is unlike any other disease, it can be a real struggle. Whatever your struggle today never give up. Find a way to make the best of  whatever the situation is.

Hope and healing,

Christal

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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.

Christal
Filed in: Life with Masto | Mast Cell 101 | reducing chemical exposure | relapse
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