Feeding What We Want in Ourselves

It has been quite some time since I last posted here or on any of my blogspots.  This is because I promised a friend I would not post again until I learned how to share my story without triggering mast cell attacks. I did succeed in that some time ago, but in the mean time I developed habits other than blogging. I apologize for the long silence, but please know I made good use of that time to work on healing and learning to thrive not just survive. I think you can too. 

Sometimes we need to refocus and emphasize or build upon what we most like about ourselves or want in life. Other times we feel trapped in the basic needs of life and, in a loosely Maslow based concept, must focus on obtaining or building those basic needs in our life before we can self actualize in other ways. But what if you are told one of your basic needs, health, is unobtainable at this time. I used to think that I couldn't dream or focus on other things because as one doctor said (I lost the name my apologies) "healthy people have many dreams, sick people only have one and that is health." But I have decided to take a different tactic. I will neither accept the level of sickness my past doctors said I should get used to, nor will I give up on my dreams other than health. Since there is no cure yet, I will in fact focus on my other dreams even more than physical health and I believe this has helped me be healthier over all. 

Here is a basic summary of what I have found works for me. I have taken to focusing on three main things in my life with the limited time and energy I have: time with loved ones, health, and my art. Those have been my priorities for the last two years, And I do not regret it one bit! 

More specifically I have taken to putting aside what I am doing when my loved ones come home to ask about their day, keeping a special journal on hands at all times which I can draw or make notes in, following a strict health treatment plan. 

This treatment plan includes taking certain medications at specific times or as needed, staying hydrated, gentle exercise, eating my safest foods and avoiding mast cell triggers. Sometimes those triggers are easily avoided like seafood or hot water, other (usually environmental triggers are harder to avoid such as strong emotion, inhaling other people's food scented body products, air freshener seems to be any indoor place one goes and some stores blow it outside to entice people to come in so just walking by can trigger mast cell degranulation. A large amount of my life does have to be focused on health, but it does not have to be in charge of my every waking moment. 

To avoid environmental mast cell triggers I have many techniques one of which is to spend a lot of time at home where we can better control what I am exposed to with air purifiers and air filters and simply not bringing those things into my home.  and at first that meant I spent a lot of time on the Internet, and Facebook as it was my main connection with other human beings.  

Sometimes Facebook and Twitter are full of difficult or emotional posts or share negativity rather than hope or positivity. (Gasps of shock I am sure ;)) At times I must take Internet breaks in part or just Facebook breaks and other times I emulate historical vows of silence entirely for hours or days at a time. But most often I focus my energy on honing my craft, reading, and spending time with loved ones, and I have found that despite a constant underlying amount of pain and illness, I am learning how to thrive not just survive. 

Years ago I embraced my inner artist and said to myself, "Sean, I have always wanted to make art. Why am I not making art and how can I change that?" And so began a daily commitment to myself to make any tiny to large amount of art that I can. 

For as long as I can remember I have loved playing with color, texture sound, light, sensations and making things my family called art. From mud pies and finger painting to intricate slip molds my mother let me help pour and fired for me so my friends and I could paint them and proudly display to the light boxes I often make and the mud slinging of ceramics that I have rekindled a passion for. 

Yes, health is one of those basic human needs most people prize, but what if you discover your health problems that you spent large chunks of your life seeking a diagnosis and/or treatment or a cure for is currently incurable. Not only that, but it is lately not understood yet by doctors and they can only treat some of your symptoms and take a band aid approach, so you must decide how to proceed. Do you throw all your time effort and life savings into finding alternative treatment options to, combine methodologies, give up as some doctors told me and simply accept multiple daily mast cell degranulation events and weekly anaphylactoid episodes? 

For me I chose different paths at different times in life with varied levels of success. Most recently after my 2013 "perfect storm" moment which sent my health spiraling downward into a constantly reactive state including fight or flight and anaphylaxis modes, I have found a treatment plan and way of living that best works for me at this time. It includes a combination of thought paths and methodologies including western medications, trigger avoidance, alternative methods and restructuring my time and use of my energies into things which bring me and others the most peace, love, light and joy. 

I do not always succeed. I am not claiming to be a constant source of loving joy and light.  It is difficult especially in my worst moments of pain and when chemicals are pouring or of my mast cells telling me to fight or flee. But I am finding more positive moments than I did before. And that is a huge victory to me. 

I have been called an optimist by some and a pessimist by others. I suspect this is because I am what I consider a realist and don't believe in a glass half empty or half full. I see that it is a glass and there is something in it. Perhaps in some ways it is my Buddhist leanings which have lead me to take a "it is not good, or bad, it simply is" approach to most things.

In other ways I have found it helpful to make note of things I find joy from. Some people keep a gratitude or happiness journal. The app called "happier" has been a place I find useful to keep notes of my happy moments and share in those of others. Tho at times writing things down Ina special journal can be wonderful. Even just snap quips and memories. 

In the past I blogged, but more Recently I have taken to keeping notes, scribbles, quotes, memories, sketches and the like in various small journals that are light weight enough to always keep at hand. It was suggested by an artist friend. As poet decades ago and I highly recommend you do it. Be it home made or store bought. If you can scribble in it, it's a good start.

What are your priorities? Have you found a level of health you can work with as a baseline even while you continue strivin f for better health? I have and I highly recommend it. What are your tips, tricks, techniques, or chosen methods to thrive not just survive? Have you taken that step? If you are dealing with constant anaphylaxis and still seeking the best treatment plan for you I understand the need to pour all that you are into finding it. But for me, taking time out now and then to focus on. 

The other parts of my life I enjoy has helped in my continued path of healing and being as healthy as I can within my own bodies limitations. In this way I find myself constantly surprised at what I have achieved or even dreams I once dated not to dream and now see as more likely futures. I would love to hear others thoughts on this. Thank you for reading my ramblings for the day and may love, peace, joy and healing be with you.

P.I. The Hunt for Reasons - Early morning reaction

Woke feeling like something heavy and painful was sitting on my chest and before i was awake enough to understand why, it was constricting my throat. Chewed on a  liquid Benadryl gel cap and  tried to find the time, realized it was 6:45 and my water bottle ran out.

Hurried to the kitchen to refill my water bottle, started coughing as it filled. Bit a second Benadryl gel cap and wondered what that scent i could smell through my my partially bloked nasal passages was.

Heard my house guest say something like good morning as she headed out the door for work and a cloud of...something fainter than perfume wafted by as the coughing increased. Hurried back to my room pointing the fan out to blow any other scent away from my room.

Sat the head of the bed up. Soon started feeling better while I read Facebook to distract myself. So It went away with just two Benadryl, tho I did need to bite them.

No Epi needed, but I wonder if those other times this happened and I was blaming it on Carlie Marraro's shampoo maybe it was the house guest's? But then why doesn't it happen daily?

7:15 I shrug and decide to blog this... or should I post this friends only on my Facebook? No, better blog it so I can look back at it next time I have to play early morning reaction P.I. Besides, maybe reading this will help someone else with similar reactions somehow.

7:30 I finish editing and wonder if someone will mistake this matter of fact entry as "whining and complaining"? Shrug and sigh relieved that it no longer hurts to breathe and decide the benefit outweighs the risk of being misunderstood. Thank goodness for liquid dye free gel caps!

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: