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)