Update: My experiences at Mayo Scottsdale

Update on my Scottsdale mayo experiences:

Things are looking up!

Finally figured How to log onto their internet patient communication thing that gave me instant access to my medical records, and it is wonderful.

I *was* frustrated after my last appointment with Dr Lewis as he is hard to understand sometimes and I thought he blew off what I told him about ketotifin, but he did not. Mostly i have been taking a wait and see attitude because i had mixed reviews before going there.

In reading his very thorough notes, I now see that he heard me, and is holding that option open after all. What a relief. he also did listen and diagnose me when I came in which I an eternally grateful for! As a whole, my experience with mayo has been above par!

The down side with Dr Lewis may in part be due to me not hearing as well anymore. Sometimes I miss things or misunderstand. But Carlie did say he is not the beSt in person communicator. Sometimes he just looks at me and does not answer my questions. But in reading his notes I found answers! So in the future I will read the notes after each appointment.

Also his office accepts faxes for him with info and questions. That is great, and he does eventually get me answers.

My new neurologist, Dr Starling, is great!!!! She took her time and was very thorough, asked tons of questions, looked at my notes, and had ideas I hadn't suggested, plus took my ideas into consideration. She was kind, compassionate and competent, it was what I wish every first appointment with new to me doctors was like! To be honest, I almost cried with joy and relief.

She has already scheduled me for a migraine and trigger point treatment, is checking with Dr Lewis about various procedures and tests and medicines...but I suspect he will tell her it us all safe. There is no way to know without trying, it's just a crap shoot as always. So it makes me anxious, but excited to have new options to reduce my pain.

She is also referring me to a physical medicine Dr, who she is asking to consider prescribing physical therapy that will make me better, not worse. And possibly trigger point injections and steroid injections. She mentioned they cold get preservative free injections that have less fillers than pills so more chance of success because if we trigger my Mast cells the inflammation could trigger my migraine and neck pain and numbess, tingling, etc. sweet, sheer know a little something about it!

She said she us referring med to Drs who work well as a team. Super happy about that!!!! All in all, I have been lucky to get great doctors and have a very positive experience so far.

Every individual experience will vary, and not all patients mesh with the same doctors, so it seems to be a prices of part time, part luck, and part skill at finding which doctors and hospitals are the best fit, then having the right insurance.

I feel for people not having food doctor experiences, because I have been there. It is why I was so wary with Dr Lewis. But reading through his notes gives me how and gratitude. I know it may take time, but I believe a can further reduce my symptoms and improve my quality of life. That is a very good thing!!

What's in the baaaaag??!?!?!

Some people have noticed a red pouch I carry with me everywhere. I Love this bag. It was made by a lady I met on The Mastocytosis Society's Facebook page. I can't remember her name but as soon as I find out I will add her contact info here for anyone wanting to buy one. Edit: Her name is Peg Dixon Kleve 

It is made out of neoprene and has a red cross on the front that says Mast Cell Disease, Epi Inside.

My water bottle and red medicine bag

It has almost everything I need in an emergency in one place. TMSforacure.org has a great tab for people with Mastocytosis or MCAD, click on Patients and it will list many things you should do, documents you should have on you, etc. I call these Masto Musts.

Masto Must #1: Have water on you at all times. I got a square water bottle and carry it around everywhere with me. Someone who is sensitive to plastic could not use this bottle because the lid and base are not aluminum. Someone sensitive to metals would have problems with it too. I seem to be fine with it. I drink only filtered water from my water bottle now, because one time I drank water out of a glass and started to go into anaphilaxis because it had a tiny bit of someone else's drink in it, and I missed it. I drank about half the glass of water before I realized it was the problem. Since then I have only drank out of my own glass or water bottle. 

 

The contents of this little bag 11-15-13

Masto Must #2: My doctor would probably put these in the reverse order, but for me, this is have at least 2 Epi pens within arms reach at all times. Some people wear a holster that they carry their Epi pens in. I sometimes wear one on my belt that my buddy Sean Bowling made me out of super hero duct tape, and I have a few fabric designs I'm working on that I'll be making some out of that will match some masks I"m making based on my art, and specifically my series Masto Maybelle and Friends. But mainly I like my Auvi-q Epi to just be in this bag.

Which brings me to what else is in my little red bag. The TMS Emergency Protocol Brochure, a note from my doctor on his prescription pad of which tests must be done if I end up in the ER (last time the doctor made a copy of it, then never ordered the tests) Benedryl dye free gel caps, a bottle of hydroxyzine and a bottle of prednisone, a vogmask, and a migraine stay kool head patch. Sometimes I also tuck my wallet in there, it's just convenient. Friends tease me that it is my man bag, but it has everything in  it that I need to save my life if I react to something, and I'm cool with that.

Where do you carry your Epi pens? What else do you always have on you?

Pain, a Day In The Life of my MCAD

Wow  what a day. Woke at 3am on the 5th of November, mid histamine rush/dump. See my post about 4AM for more on what that is like. I was shaking, flushed, itching, etc. Just woke again after falling asleep after dinner for a few hours,  to my heart pounding, feeling like I am mid histamine dump as it does every morning at 3 or 4 AM, but it is only 11PM. Ah well, I know how to treat it.

My body is on fire with pain, and it occured to me that I do not often discuss this aspect of Mast  Cell Activation Disorder (MCAD) The pain is bad especially in my legs but also my hips, arms, shoulders neck, and head. Even my feet. Yup, head shoulders knees n toes, like the song. My skin itself has that acid-skin feel I have come to associate with high prostoglandins, and that used to make me wonder if I had some form of autism spectrum disorder because it makes it feel like the world is just too, too as my mother  would say. Too overwhelming, loud, bright, and prickly.  I do not share this merely to vent or complain. I don't want pity, and thus do not speak of the pain most times. But in speaking with others who have similar mast cell disorders, I realized most of us tend to minimize our chronic pain component, and most people do not even realize it is an issue we face. Including many doctors.

I have had this happen frequently my whole life. I honestly do not remember a pain free day, tho I suspect I have had them, especially as a young child when I was very physically active. But some days are almost pain free, and some days it spikes. In my twenties, I was often in the ER writhing in pain and begging them to figure out  what was wrong. They came to believe I was seeking pain meds, tho I kept telling them no, the pain meds made everything worse.  It was terrifying until I realized that the doctors were not finding answers and it would be a chronic condition. I went through the grieving process for the hope of a normal life. I learned many techniques for coping with chronic pain, Some of which I use to this day, but most days, lately, it is tolerable.

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Later in the day, Patch took me to Staples for new fine tip pens, as mine had run out of ink or been lost. This was a trip where we should have brought my wheelchair and did not, or I should have simply let Patch get the pens without me. The store was full of triggers that I have yet to test my Respro mask around. It was also large, and I have not been able to walk much lately, so was a lot of exertion at once. My legs have been getting weaker since my doctor told me to hold off exercise for now as she believed it was triggering me. Plus the stress of going somewhere new can be challenging. If I'm triggered will I make it to their bathroom in time, or worse will I have to epi in the middle of a store? I try to plan for the worst, hope for the best.

By the time I walked out of the store I felt my energy quickly deplete and my pain in my legs suddenly spiked. I slowed and tried to take my time but kept feeling worse and just had to stop. There was no option about it. My legs just refused to work and I feared I might fall.  in the middle of the walkway, right in front of Staples, walking to the car I could see just out of reach, but I was stuck. Patch went and got the car while I took an UNplanned breather and then inch by inch forced my body to move toward the curb cut. As I was about to get to the curb I lost my balance and almost fell due to the slight downward slope of the curb cut into the street. Glad I did not fall, I am still healing from my last time.

Patch took me home for some time in the hammock and i started to flush, itch, etc. so took a benedryl, then kept calm by drawing about the word "Joy" in my sketch book with my new fine tip sharpies. By the time Carlie arrived home, saw I was still a bit flushed, and told me to take another benedryl, I had a feeling I might not get the blog entries I'd almost finished earlier in the day uploaded, nor art completed to my satisfaction. The second benedryl helped a bit, in that my flushing reduced and some of my other symptoms, but the pain continued to increase. Carlie helped me out of the hammock and back to bed. I ate dinner in bed while finishing a blog entry for my art blog Http://PeaceFullCreations.blogspot.com

I quickly fell asleep after dinner and then woke at 11PM in the midst of my body doing MCAD thing again. Mast cell degranulation truly sucks eggs.  I know this blog entry will come across as complaining, but I think part of raising awareness about this disease and learning to cope is honesty, even about the hard things.

If you experience similar pain, what are your successful methods of dealing with it?  Most NSAIDs and pain killers trigger mast cell degranulation, so I usually just grit my teeth, do relaxation exercises, eliminate triggers,  and try to distract myself as much as possible.

Today I put myself in the path of many possible triggers from stress, to inhaled, and even possibly the time sitting out In the sun, although it was a nice day out and not to hot. Sometimes life looks like a gauntlet of Mast cell triggers.Normally, I am at home, avoiding triggers, eating my "Safe" foods, a topic for another entry, and generally laying low. A big day for me is one with a single outing. Let alone a day like i listed above. But one has to push through at times. Tomorrow is going to be a day I have to rest, regenerate and revitalize. What are your post/mid flare tips?

(edit 11-12-13: edited for spelling, grammer, and a few clarifications such as that day is not my normal every day level of activity, in fact it was abut 3 times an active day for me. It took me 3 days to recover enough to just walk around the house and resume my "normal" level of activity) 

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.