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!!

Rare Diseases, EMTs, and Hope for Awareness

Today is International Rare Disease Day. Please donate to TMSforacure.org or NORD so rare diseases can be better understood and treated. I thought today was a good day to finish this post:

I hate going to the ER. No one likes going to the ER, but it seems Mast Cell patients like it even less because it is a treasure trove of triggers. (try saying that ten times fast) It is full of people wearing things which can trigger further health problems for me. Cologne, perfume, deodorant, some soaps and hand sanitizers can set me off, not to mention the reactions I can have to basic medications.

But my doctor requires me to call 911 any time I use my Epi. He would like me to use my Epi more often than I do. Instead I hesitate because several times when I have used my Epi the EMT's have not treated me kindly.

When the EMT's last arrived and I explained what was happening, they said I was having anxiety, not anaphylaxis and offered to leave me at home. They tried to convince me. My blood pressure was fine at this point, and due to having used my Epi I was no longer wheezing and my dry cough had reduced to almost nil. Plus there was no swelling which they usually expect in Anaphylaxis. I showed them some pamphlets about MCAD and told them that no, swelling doesn't always happen and yes, I would be following my doctor's orders and going to the ER thank you very much.

In the ER they told me that yes, I had done the right thing, and a very nice nurse name Rachel helped me out. They gave me 50 mg IV Benadryl, some Solumedrol, and ordered the tests on the prescription I always carry from Dr Lewis. As soon as they were able to move me out of the hallway they put me in to a more private area. I wore my Respro mask the entire time that I was in the ER, but while I was there I started to flare back up two times. First when the Epi was wearing off, and and secondly when someone came up to me putting a very strong smelling, alcohol based anticeptic on their hands and then touched me with it.

Alcohol can trigger me. My eyes burned and my throat felt tight, it became difficult to draw breathe in, and they decided to give me more epi. I have to wonder if the EMT was right in a sense, no I was not having an anxiety attack, but maybe I would have been safer at home. I wish more people knew about mast cell disorders so that people like me could  feel safe calling 911 or going to the  Hospital.

Please pass this on to raise awareness.

Chronic cluster migraines or MastoMigraines

At two points in my life I lived with excruciating, chronic,  cluster migraines. Cluster migraines are so painful you want to pull your brains out your eye sockets. They can feel like a sharp pinching pain in your head and make want scream but noise hurts.  They can cause other symptoms liked numbness or tingling, olfactory or visual hallucinations, and more.

As the name implies, they happen multiple times a day. Just as one starts to reduce in intensity or possibly even seem to be going away, another starts. Sometimes I could not sleep for more than an hour or two a day, for weeks on end. I went to urgent care at first and their special migraine cocktail would reduce the pain enough to sleep a couple hours, then it would come back stronger than ever. I avoided ERs but visited a couple during the waiting period to see a neurologist. I saw neurologists, and nothing they tried helped and some things made me worse. This was sack before with MACS. Finally I saw a naturopath who has a book in her office written by a neurologist who got migraines. It said there were 4 parts to head health..and honestly I have found the neurologist part to be the least of the four things. The three things I have found most helpful in reducing my headaches are: mast cell maintenance, light exercise/stretching, and stress reduction. The neurologist would include her specialty, but I haven't seen a neurologist in years as was seeming to waste money.

Reducing triggers, and adding antihistamines helps the most. A low histamine diet may help some....but whatever your particular triggers are, reduce them. This sounds impossible to those of us with salycilate sensitivity, but it's worth it! When I eat foods that are high in histamine and run into environmental trigger, migraines a likely occurrence, but staying away from the things that trigger mast cells helps immensely! antihistamines that first helped me were zyrtec during the day, and hydroxyzine at night or on days with breakthrough pain. Now i use Allegra during the day, because Dr says it's stronger, seem to need more of them, so i am not convinced.

Stretching and light exercise like yoga was the next most helpful addition. Be careful if you have vertigo or exercise induced anaphylaxis, but when i stretch, I have less migraines.

Finally and certainly not the least important of the three, stress reduction. This may also sound impossible for those living with chronic health problems and pain. the stress of less than understanding friends and family, doubting doctors who look down on talk down us and often make difficult seek treatment, emergency response teams who have never heard of a mast cell disorder let alone Mastocytosis, financial woes, and the list goes on...all can make reduction a challenge, as well as very real anxiety which is triggered by some of the chemicals released by mast cells whether you have MCAS, Mastocytosis, oral allergy syndrome or something else entirely. But a few things helped me to reduce my stress.

First I added meditation to my daily practice. Getting quiet time by myself with no distractions in other words. Even five minutes each morning helped. Yoga, part of my exercise regimen, also helped reduce stress as can other forms of exercise if you can tolerate them.

Once I  slightly reduced my stress that way, I was able to also develop coping mechanisms for dealing with chronic illness. A therapist can help think things through and problem solve or prioritize.  as well as introduce you to new or slightly altered ways of thinking about health. Sleep was one of the things i learned to prioritise as it is a stress reducer and promotes overall healing. And Hydroxyzine has a slight anxiety reducing capacity as well.

Stress reduction could be a post all it's own, but trigger reduction, exercise and stress reduction seem to be a migraine busting team!

What helped you cope with headaches?

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?

Trying out Singulair

Waiting for Carlie, Still Slightly Flushed
In the ER at St Joe's 

I have been having a hard time writing this blog entry in part, because I was still deciding how I could best utilize this blog for awareness raising. Not everyone wants to hear the nitty gritty day to day of living with chronic illness. And how Mast Cell Activation Disorder (MCAD) affects me is not the same as how it affects everyone else. But I have decided to go ahead and blog here on the main page, and the various other pages of this blog will be for general information, interviews with other people dealing with mast cell disorders, and the like. Please
check  out some other great and very informative blogs on Mastocytosis, MCAD and Idopathic Anaphylaxis in the links section to the right.

If you would like to see something on this blog which is not yet here, has not been discussed, etc. please feel free to ask. As I get the time and energy I will be adding blog entries, links, information, etc.  Done with the housekeeping/site upkeep, on to the meat of the entry: How starting Singulair went for me:

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