Mastocytosis Flare Recovery Month 10 Day 17

I have been home from Florida now for just over 3 weeks. I am having a few more good days. My lip, throat and tongue swelling comes and goes. Pain, which is almost always present to one degree, is less severe than it has been. I’m able to get out of the house about once a week for a few hours. Progress is being made.

Doctors, Doctors, and more Doctors!

I’m making arrangements for my big trip back to Florida. For the medical care I require with the PICC line and TPN my insurance requires me to have a local team of doctors. I leave in a few weeks to head back for month- long experiment and I am currently working on the last and most vital piece of the team, the GI doc with other mast cell patients. It is a very slow process and sort of sad. I have had four doctors refuse to see me or provide care, apparently I’m too complicated- hee hee! My hubbie could have told them that 🙂 One nurse said “you can’t really blame him for not wanting to take you as a patient, you are kind of complicated and that scares him”. I was thankful for her honesty and told her he was not the only one. I conveyed to her that I did understand why it would scare him. I ask her to imagine how that would make a patient feel, one with no medical school experience. If the doctor was scared imagine how scared the patient must be living everyday with themselves. She had never thought of it like that and I’m sure the doctor didn’t either. I guess you know you are really sick when doctors are afraid of you. While the experience is disappointing I know The Great Physician. He shows me he is with me everyday and redeeming what this broken fallen world has caused.

FAQ

Today’s post I thought I would answer some frequently ask questions. I get a ton if questions, which is very cool. I like helping others to understand about this new disease that can surface in anyone. Mastocytosis and mast cell diseases are rare but rapidly growing conditions that can infinitely impact your quality if life. Most people have never heard of these disorders and naturally have questions. If you have a question feel free to post it in the comments and I will do my best to answer it.

Now that you are back home from Florida do you still have to wear the masks when you go outside?

• Yes. If I don’t wear it my lips and back of my throat swell significantly. I still get swelling with the mask just not as much as if I did not wear one at all.

Are you moving?

• That is the plan, if the trip goes the way we think it will.

If you move away do you feel like you are quitting?

• Umm…. No. Giving up would be to stay here where it is comfortable and sooner or later let it kill me. Moving is actually fighting back against this disease. If God has prepared for me a sanctuary I will run to it eagerly.

Do you get hungry?

• Yes, and a couple of times I’ve even been h-angry …. angry because you are very hungry 🙂
  

If you could eat tomorrow what would be the first thing you ate?

• It changes depending on the day but most days I would choose a big juciy bacon cheeseburger with salty crinkle cut fries and a slice of turtle cheesecake or Reese’s peanut butter cup. I say that but honestly that is probably a weeks worth of food for someone who has not eaten in a long time. I’d be happy with a couple slices of a fresh peach and a couple tablespoons of sticky rice.

So you can’t eat food?

• Nope
  

So you eat gluten free?

• Nope, no food. There are many foods that don’t have gluten in them, meat for example. I can not eat food at all right now.
  

Then can you juice?

• Nope, juicing is still food.
  

Can you do gum, mints, candy, cough drops?

• The only things that I can swallow are a few brand specific bottled waters.
  

What kind of water?

• Aquafina mostly but I can also drink Osarka. Other mast cell patients do well with Fiji and Voss but I have not tried them. Artesian spring water is recommended by my dr but often hard to find.
  

What happens if you drink another kind of water?

• The skin on my the inside of my mouth rolls away like a scroll leaving a sore with in minutes and also belly pain.
  

Why is that?

• Many bottled water brands add minerals and chemicals to “enhance flavor” that my body reacts to.

Were you born with this disease?

• Hard to tell. People can get this disease from birth or spontaneously. Many mast cell patients, not all, have a genetic mutation that cause the disease.
  

What causes the mutation?

• I don’t think they know for sure but chemical exposures in food (pesticides etc) and environment are the most common reasons I have heard. I tend to think this may be true because mast cell patients’ symptoms seem to be made worse by chemicals- eating, breathing, or absorbing through our skin.

Does everyone who has a mast cell disease loose the ability to eat food?

• No, I went untreated for years and so more damage was done to my system. This is why it is really important to get treatment early.
  

Is there any cure for Mastosytosis or the other mast cell diseases?

• Not at this time. This is why I am writing my book, to raise awareness and to raise money for reasearch to find a cure.

You look frail, what size are you? How much weight have you lost?

• Have you ever noticed how our culture is obsessed with size and food? I am always amazed at how often this topic comes up. Weekly I will hear someone confess they are jealous of me because of my weight loss and they would do anything to be my size. This makes me soooo sad. My response is “Don’t be jealous of malnourishment.” Weight loss is really cool when you eat right, exercise, and make healthy lifestyle changes. It’s not so great when it comes due to an illness and you can’t make it stop. It’s more like a run away train. Mast cell patients have much less control over their size than most. Unexplained weight gain and weight loss are both symptoms we have to learn to live with. Somehow all of us need to learn to love ourselves no matter what size and shape we are. That being said, going down in size is more fun because you need to shop for new clothes and the cuter clothes are more available in smaller sizes. The first time someone ask me what size clothing I wore I was taken off guard. Personally, I would never ask someone what size they are but I’m a pretty open person to others questions. I have lost almost 75 pounds and wear a size 2 in pants and sm to medium for tops.

How do I know if someone I love has this?

• People with a mast cell disorder can appear to be perfectly healthy until faced with a trigger. Once exposed to the offending substance, specialized immune cells called mast cells, release many chemicals into the body, causing symptoms and creating a literal war zone. Triggers can include such unusual things as heat, sunlight, alcohol, many foods, artificial flavorings, preservatives, pesticides, perfumes, seasonal changes, pollen, room fresheners, exercise, friction, fatigue, mold, anesthetics, antibiotics, narcotics, emotional or physical stress.Once triggered, there are a myriad of symptoms that wreak havoc on daily life. To further complicate matters, symptoms vary from person to person and from day to day depending on physiology and environmental influences. Some more common symptoms include: itching, headache, rashes, flushing, high heart rate, hives, chest pain, abdominal pain, bloating, GERD, diarrhea, vomiting, bone and/ or muscle pain, brain fog, cognitive dysfunction, anxiety and/or depression, lightheadedness, fainting, blood pressure instability and anaphylaxis. I’m have written a basic overview of the disease in this post. You can check out a couple of YouTube videos produced by The Mastocytosis Society to learn more. I will post them below. Very specialized testing with proper staining is required for an official diagnosis. With early diagnosis and treatment the prognosis is significantly better.

You have lived with so much suffering in the last few years, are you sad or happy that you were born?

• I am so happy and thankful to be alive, probably more than other people. This illness has really helped me to know what is truly important in life and focus on those things. Everyday I wake up is a day I can serve my Lord, be with my family and friends. Things like you. Thank you for walking this road with me and trying to learn more about this crazy life I live. I couldn’t do it with out you!