4 AM Wakeup

4 AM Art Therapy Ink and Digital Manipulation 

Since April I have been waking up at some time between 2-4 AM in various degrees of sickness. It is a major bummer and means I have been getting about 3 or 4 hours sleep. It is, as some remind me, an improvement to waking 4-6 times a night.

Previous to Finding The Mastocytosis Society on Facebook, and Dr Lewis at Mayo  clinic, I would wake struggling to breathe. Even with my C-Pap machine running. It was very scary.

But since adding treatment and removing some triggers it is reduced to once a night, being a thick feeling in my throat, a cough, itching, and mild flushing for the most part. A benedryl clears it up but I usually don't fall back asleep for hours. Friends from Masto facebook groups have suggested this is common as our bodies release a "histamine dump" at 2-4 AM daily. Great... more research is ahead of me on what exactly that means, and I have made a note to ask Dr Lewis about it. 

I have been making art in the mornings daily, since I am awake anyway, and my art helps me to deal with the stress until the symptoms improve.  Today I decided to deal with the stress of the 4AM histamine rush by making art about it. ART Therapy works really well for me!

I share about this here in order to keep track for myself of what has been going on, and also to raise awareness of what some  people with MCAD and Mastocytosis experience in our daily lives.

I am only one person, So can only share immediately from my personal experience. However, I plan to interview others with Mast Cell disorders and will post those interviews to this blog in the future. Also, I have been collecting links to blogs by people with illness like me.

If you would like to share about what it is like to live with a mast cell disorder of any kind, please comment below and we can connect to discuss how best to share your story.

To see more of my art, please visit http://PeaceFullCreations.blogspot.com 

Diagnosis and Treatment (a comedy of errors)

You what?!?! (Sean-Michael in his Respro mask)

Today was a comedy of errors, mishaps and the like. Our cat has allergies and had a vet appointment before mine. I waited out in the car where hilarity ensued as people walked by seeing me in my mask and did not know what to make of it. We did not pack the wheelchair and somehow we forgot how to get to Scottsdale Mayo and drove 15 minutes in the wrong direction, traumatised post vet cat crying a large part of the time. Actually, after I pet her through the bars, she settled down and purred for the rest of the ride. But let's get to the meat of the story:

My Fellow Patient after the Vet (she was purring)

Today I was told that it is most likely that I do NOT have Mastocytosis as no abnormal mast cells, and not enough mast cells per area were found in my bone marrow biopsy. He also said it can never be ruled out 100%, as it can be hiding in the bone marrow i.e. missed during the bone marrow biopsy, or it could at any time happen that I move over into a diagnosis of Mastocytosis. Currently the most accurate label for what I have is a Mast Cell Activation Disorder. I had already gleaned as much from my conversations with his nurses, but Dr Lewis just got back into town and wanted to meet with me personally. He answered all the questions I asked, and I have more written down for the next visit.

In my limited and new understanding, Mast Cell Activation Disorder basically means the mast cells are over active. It is not contageous, it won't make you catch the "red hulk disease" as Nick calls it. It just means I flush, get throat swelling, itching, if I"m not on a lot of antihistamines hives, must carry 2-3 epi injectors at all times, pain, fatigue, etc.

Everyone has mast cells. Mast cells can put out various chemicals into our bodies and can be a good thing if they are behaving in a healthy manner. They put out histamine, prostaglandins, and more. They participate in the immune system and are most well known for their work attacking allergens, but in my body they are on overkill and instead of putting out a little bit of this and that as needed, my body gets flooded with thousands of more prostoglandins, hystamines, etc. than needed. You can learn more at mastcellaware.com

What this diagnosis means to me, is better treatment. Previously I was on 3 x 180 mg Allegra, 300mg Zantac, and Benedryl or Epi as needed. I was still reacting multiple times a day, tho only used my epi once this month so far, which is an improvement. Now we will try adding Singulair. Although normally used for asthma, it has been found to help patients with mast cell disorders, and according to Dr Lewis has relatively fewer complications than other options. I am relieved. I hope this reduces the frequency and strength of my reaction and allows me to gain back some foods.

There is still no cure, and no expectation of major recovery, though that sure would be nice and you can donate to TMSforacure.org to make that happen, donate while you shop, or see the Awareness and Fund Raising page here for other ways to help.

At this stage we are just looking for baby steps of improvement in my condition, and in 2 to 3 weeks hopefully I will see recognizable changes in that my allergy-like reactions to triggers (mast cell degranulation episodes) will be less intense and farther apart. Hopefully the ER staff at St Joe's will see much less of me nd I of them. I hope to need Epi less frequently and frankly not at all tho the latter is unlikely. I would very much like to gain back some foods as right now I have only found one food that is "safe" as in has not triggered me. 

Sean-Michael making zen art outside Mayo, Scottsdale

If adding Singulair doesn't work, we will move on to trying Gastrocom.
Some people with Mast Cell Activation Disorder love Singulair and get great results, some do not. Everyone is different, so it is a trial and error method of finding what treatment my body will like best. At a later date, if we feel it is appropriate we might try aspirin therapy to reduce the prostaglandins in my body, but I am sensitive to aspirin so the desensitization process is not something we want to do at this time. Sounds like a good plan to me.

So to sum it up, I have MCAD, I will be trying out Singulair for 3 weeks to see how it goes. I am to continue avoiding triggers as possible, and hope to add low histamine foods into my diet if Singulair ends up being helpful. MCAD is not contagious, not cancerous, and not currently curable. It is however more of an answer than I have had and who knows, maybe with Singulair I can resume exercise, build up my strength and get back out to the world more actively. In the mean time I will continue to update this blog, improve it's resources, and to make art every day be it a simple doodle, or something more. Because I am much more than my mast cells and so are you. 

Mast Cell Awareness and Sean-Michael

Hello and welcome to my new page, Mast Cell Aware. This blog is under construction. It will be growing swiftly I am sure, but only as quickly as my health allows. So please be patient and check back if you do not yet find what you are looking for. Also, please let me know if you have suggestions of facts, resources, awareness and fundraising efforts so that I can add them to the appropriate pages. If you'd like to learn more about mast cells right away,  there are some helpful links on the right side of this page.

Sean-Michael Gettys with his Vogmask June, 2013

A little about me. My name is Sean-Michael Gettys. I am an artist who was born and raised in California and currently lives with my loved ones in Laveen, Arizona. I am also a person living with chronic illness and pain who has been looking for a diagnosis for a very long time. In order to deal with the stress of recent health issues, I began making art every day, and keeping an art therapy sketchbook. Along the way I started to develop a character named Masto Maybelle and some of her Faithful Friends.

I will write a more in depth story on the page "Me and MCAS", but for now just let me say I am happy to have a label for things but very disappointed that there is no cure and that the treatments are not always that effective. You can see what Masto Maybelle and her Faithful Friends are up to on my Peace Full Creations page.

It is a very scary thing to live with the constant threat of anaphilaxis. Not everyone with a mast cell disorder does, but I have shocked several times. Some people shock more often than me, others not at all. Some have hives, some do not. Some are small children, others are full grown adults. Some have been sick or had severe allergies all our lives, others were perfectly healthy until they were not. The only thing which seems consistent is that we all have mast cells which are either over active or there are too many of them. More on that coming soon on the "Facts" page.

No one should have to suffer in fear and pain with no idea what to do next when there are at least some answers out there. I am glad to finally be finding some. This is not a medical site, and is not meant as a place to seek medical advice, I am just one patient advocating for myself and empowering myself with as much information and resources as I can find, and I want to share those things with others.

Sadly there is not yet a cure, and I will be adding links to various fund raisers to the "Awareness and Fund Raisers" page as I discover them, because research for a cure and better treatment is still needed. Please comment in the appropriate section if you have any recommendations or suggestions.

Again, if you'd like to learn more about mast cells there are some helpful links on the right side of this page.  Thank you for your time and patience as I get things rolling.

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