The search for answers 2010-2015

I became very ill October 2010 I started keeping a diary of my health.

Over the last couple of years. I have started to develop physical symptoms as well as several allergic type reactions to many different things in my environment.

By reactions I mean, blisters in my throat upon food touching my lips or as I chew. My tongue itching, Itchy skin rash, my lungs feeling full almost gasping for air, my throat closing, burning sensation all over, upset stomach, vomiting, diarrhea, severe headaches.

I noticed developing symptoms where I cannot tolerate the cold, or heat, my circulation was poor, my blood pressure spiked, my whole body ached, muscles ached, bones ache, the veins in my hands would burst at the slightest touch to things.

My fingernails became brittle and toenails started flaking and splitting.

I was allergic to Medicines, foods, environmental, chemicals, makeup, lotions, hair dye, even my tattoos.

I had been told I have fibromyalgia, lupus, raynauds, arthritis, and thyroid issues. But my tests that are run for these always come back in what doctors consider normal ranges. This is frustrating to me.

I have had 7 all natural births and my last was caesarean. I had always had what I considered great health with only a few allergies at that point.

I became a stay at home mother after the birth of my last child. After about 3 years of being in my home nonstop. I became ill, and symptoms that got continually worse.

After ruling the other diseases out I mentioned earlier, they began to check to see if I was poisoned. That to was negative.

After lots of tests and not being able to eat foods in, I was living on plain boiled chicken and angle hair pasta, and sugar cookies. It wasn't long I was reactive to those things as well.

I developed an allergy to all tooth pastes, mouth washes, and went to the dentist they were not concerned.

I developed a lump in my breast, and reactions to medications, they refused me a biopsy and sent me a letter stating I'm to high risk and they cannot treat me. Luckily for me it doesn’t seem to be growing and or be cancer.

As time went on I saw an acupuncturist who taught me the art of meditation.With his help, I was able to work in a few foods.Greek organic yogurt, kale, lemon, ginger, and blueberry juice. That is what I lived on for several months.

Over time, I was able to tolerate grass grazed beef from a local rancher into my diet.

Wow seemed to be going great.

  I developed kidney stones. I had one kidney full of them and an oily substance that showed up on film like contrast. Again because of my reactions and or allergies to everything the doctors decided they couldn't treat me nor do surgery to remove them.

They were so painful and I couldn't take any medication. I would throw up from the pain.

After becoming weaker and unable to tolerate foods, I was sleeping a lot of the time, almost bed bound and feeling like dying loosing so much weight rapidly only weighing 93lbs from 125 lbs.

One day I was passing out and very ill my family called EMS they took me to the local hospital.I was admitted and monitored for a couple days. Still begging them for help their reply, “there's nothing we can do for you and we're dismissing you. Maybe you can go to mayo clinic and hope they figure it out. You are too complex and they are a one stop shop”.

The acupuncturist was able to help me work in lemon juice and that is what helped me breakdown and pass the kidney stones over time.

I moved to Seattle for a couple years. I seemed to get much better.

Still not able to eat foods or take Meds but got stronger in other ways. My hair started thickening up, my lungs felt better, my stones were all gone.

We moved back home into our house and within a year I was back to being sick. My hair is falling out I'm malnourished and have no energy again, I'm having trouble breathing, I became intolerant and reactive to many things. Food cooking in the house would trigger a reaction.

I became fragrant intolorant, could not use any cleaners, perfumes, lotions, wear any metal jewelry, and the list kept expanding and the reactions progressing.

My skin is thinning and if I get a scrape it bleeds and takes forever to clot. In March I developed a cold that had me bed bound for about 6 weeks. H1N1, My rancher ran out of beef. I was living only on Greek organic yogurt and blueberry juice I was becoming so weak I couldn't move I was malnourished and anemic so badly I needed a blood transfusion and try doctors at the ER decided against it asked me to follow up with my doctor, Sent me home.

I had returned to the ER with bruises all over my legs and arms with knots under them like blood clots they did sonograms but there were no clots well my explanation was maybe since I'm malnourished and living on yogurt I have developed calcium deposits, and in my Drs frustration of not knowing what else to do even though my labs were abnormal and all over the place set up an appointment to go to an allergist in Denver Colorado however after they found out the severity of my illness they stated they could not see me until I was in stable condition.

My doctor was frustrated because I called him asking for options such as admitting me giving me a preventative and an IV of nourishment such as vitamins and minerals. Maybe even trying foods. His reply was we cannot do that. We don't have the specialty Drs here in our area for this.

A couple of years have gone by, I saw an article on the doctors tv show page about a girl allergic to the world.

I contacted my insurance agency they said maybe you have Mast cell disease... They gave me some contact information to the Mastocytosis society. I reached out to Valery, she was an angel who provided much inside on what might be happening and I needed 2 tests preformed to confirm.

Don’t be discouraged if this happens to you, because it takes an average 5-7 years to get diagnosis because everyone says these diseases are, rare, the truth is, they are rarely diagnosed and only now are starting to get recognition.

I called the most helpful person (an earth angel) back she wrote a letter of recommendation for me and now I had an immunologist who will run these tests to see if I have Mastocytosis or a mast cell disorder. They all came back negative. In spite of all my labs being inconsistent because of a labratory error, and its to rare I could never have this.

I saw a dermatologist who confirmed I had skin cancer but because of my condition he wasn't comfortable treating me until after seeing the mast cell specialist, because he felt I had Mastocytosis.

I found a new family physician who I talked with at length, ha actually about 35 min. She agreed to take me as a patient and help me. Well as time went on, she decided like everyone else. I was too complex, she would see me but not for mast cell disease because it was too time consuming and she didn’t have knowledge to help me. I asked her to refer me to an out of state specialists, one of the best actually.

I found another local hematologist / oncologist who was familiar with mast cell disorders who would be willing to follow the specialists protocol. I arranged an appointment with DR Afrin out of Minnesota, one of the top educators on the disease.

I was able to travel to my appointment through a company called Angel Flights where pilots donate time to fly sick patients who cannot fly commercially. I was perfect and fit their criteria.

After waiting a year, I was flown into Minnesota. I stayed at a local hotel.

I have good days where I can get up and do things. I have bad days when I have to wear a chemical blocking mask.

The rental car smelled of perfume set me off I was slightly reactive. Good thing this was one of my good days

The cleaners in the hotel room made me slightly reactive again.

I opened the window and turned the thermostat off.I froze because it was cold but managed.

Upon arrival to my appointment I was greeted by Dr Afrin.

I said "today's a good day I'm not reactive" he said " oh yes you are, I see the rash on your neck". He left the room came back in sat down, went over my huge stack of doctor records. He said "your classic, you are the perfect definition of a classic case". Meaning MCAS. He suspects I have had it since childhood. I spent about one and a half to two hours with him going over my history. He said there is no cure. I will have to live with the new norm. He would not be able to diagnose me until he gets my labs back, but he strongly agreed it was most likely MCAS.

I was sent to the lab,and a standard protocol was put in place for my drs to follow. I will go into detail in a future blog.

Written By

The Origional "Girl In A Bubblel"