Dealing with chronic illness, as I do, is (I'm discovering) a matter of perspective. HOW I think about myself, my body, this pain, whatever is malfunctioning affects how 'heavy' or how I can handle whatever it is that is present. I've spent an inordinate amount of time this past 2 years trying to convince myself I don't have some crazy Mast Cell Disease; that I'm not going to go into anaphylaxis at the drop of a hat, that I won't be riddled with pain, hives, flushing or throwing my guts up for days on end and I a NOT going to the hospital...it hadn't occurred to me, until my Life Coach pointed it out, that this energy I expend on trying to convince myself of things that are other than they are, is futile. Accepting that I have this nutty incurable disease does NOT mean that I sink into a pit of self pity and stay there, drowning in pain, sorrow and self-pity. On the contrary, accepting it means that I have a platform from which to bounce into the new 'normal' that I am currently experiencing and living. And for those of you that know me, you know that this means I will be spending time and energy trying to figure out how to live with this illness in productive, positive and passionate ways. I can't believe it's taken me almost 2 years to sort this out. But such is the way of life learning...

I was sure that IF I just told myself that I didn't have this illness that it would just go away. There are still some people (lesser now...) in my life that think if I just do this, it'll all go away. Well, I've done that. And it didn't work. I also quit my medications a few weeks ago, for just over a month because I wasn't sure they were actually helping me; because I didn't want to have to take allopathic medications to keep this body close to homeostasis; because I didn't want to rely on western prescription medications to stay alive; because I was hoping that if I just tried hard enough, I could make this go away. It didn't end well. My drugless experience was ok for the first 3 days or so. I felt freed of the prescription shackles and like I was in control of my life, for the first time in ages. However, then I started hiving just from walking outside or taking a shower or the slightest emotional strain; then it just got bad. I had a run in with some latex that while I managed on my own with epi spray and the slew of drugs I have for said such emergencies, wasn't (it turned out) enough. I continued to rebound for days, which then culminated in my blacking out, several times, over a few days. The gastrointestinal crap had begun in the midst of all of this, but took a back seat to managing breathing and blood pressure levels. However, after 5 days of continual barfing and gut pain, I ended up in hospital, severely dehydrated, asthma-like attack and hypothermic. I still ended up needing injections of epinephrine, benadryl, stemetil, and IV solutions of solu medrol (steroid), etc. I got severely told off for coming off my meds, and getting back on them was, after getting stablized, the first priority. The telling off was because...it almost killed me.

I'll admit, I felt utterly defeated. Not only did I have to go back on the medications but I had been black out FREE since July 2009...and now I had to start the clock again. It's a whole year again until I can even contemplate applying to drive again. My husband, gently and sympathetically, told me this past weekend (during our alone-time, we celebrated 10 years of marriage) that I might just want to let go of that dream to drive again and IF it comes to be that I am well enough to do so again, then we'll deal with it. He's frightened of me living in this cycle of striving for something possibly unattainable and being disappointed and feeling defeated.

It's those feelings of defeatedness, wishing for otherness and hoping this'll all go away that is unhealthy. It causes a person to spend so much time wishing for otherness that they aren't actually 'present' in the life that Is. My yoga practice has helped me to realize that this 'presence' is vital to being healthy, on all levels. Wishing for the old life that I had (that I didn't enjoy when I had it) is absurd. Not to mention pointless. So, when my Life Coach this past week, said to me, "Why can't you just ACCEPT that you've been given this illness as a way of moving into the life that you're supposed to inhabit? Why do you keep fighting what IS?" that I realized I've been going about this all ass-backwards. Accepting the diagnosis of Mast Cell Disease/Systemic Mastocytosis and Idiopathic Anaphylaxis doesn't need to be a noose around my neck or a ball and chain tied to my ankles. It's not the end of the road. It's the beginning. THIS disease, the near death experiences I've had with it, and the day to day chronic pain & discomfort I've experienced are for some reason. And, I have a responsibility to handle it. So I'm going to trust the Universe/God/Whatever you like to call it, has given this to me for a reason. And, I'm going to keep learning. Who knows, perhaps one day I'll be able to help others...but in the meantime, I'm going to keep learning.

This past winter, I took a course in Level 1 Reiki. There are lots of cynical folks out there that pa-shaw the whole notion of energy and energy healing. I'll admit that I went into this particular class with a sidewards eye, looking for the loophole and the part that didn't work. I was in for a shock. It's not until a Reiki practitioner puts their hands on, or near, you that you realize the abundance of energy constantly surging around yourself, in yourself, or others and it is nothing short of massive & magnificent...at least, this was my particular experience. The real beauty is in being able to share this gift with others, as well as yourself.

I'm no new comer to Energy work though. I think I must've read just about every manual, book and treatise on the subject. I'm obviously drawn to the subject in much the same way I am drawn to Anatomy/Physiology, Meridians, Psychology, Biochemistry, and Religious/Spiritual texts. However, it was a REAL eye and soul-opener to be actively involved in the practice of these energies. It blew my mind. Still does. Book knowledge is one thing; practical work and sharing is another. Even my cynical husband seeks out my hands now. "Honey, would you mind putting your hands on me and doing that Reiki thing?" he'll ask. A wry smile crosses my lips. He's experienced the warmth, the unconditional love and the gift that each of us possess. It feels good to share.

There are some Reiki practitioners that use crystals as part or in conjunction to their Reiki practice. I don't know enough about the subject to comment on the validity or success of it. So, this Sunday, I will be taking an introductory course in the subject with Ann Scott and her partner Craig. I don't think it is without reason that my husband decided, this past Sunday, to take us south via old Highway 69 instead of the faster open road of the 4 lane Highway 400. A "moving sale" sign pulled us. We turned the car around to go it (something we don't normally do...we'd normally keep going...) and that's where we met Ann and Craig. The potential for this to be just a regular 'moving sale' experience was there, but a little bit of discussion ensued and lo and behold, it turns out that Ann is my Reiki Master's Master. Then the subject of the class this coming Sunday came up. It's a great price because Craig is gifting his time for this. It's usually taught over 2 days, but will be compressed into one. If anyone local would like to go, they need to know by Wednesday evening so that they can copy enough manuals for everyone. Otherwise, you'll have to copy the manual afterwards from someone (like me) who's going. This sort of class would normally be about $490 for the two days. It's only $25.00.

So, serendiptious? Hmm, from what I'm learning, ALL things happen for reasons. As my Life Coach continually reinforces for me, "what better way to become a practiced Healer than to have walked through the fire of disease and illness, to emerge wiser & able to pass on your knowledge..." I have sooooooooooooooo much to learn. I think it's pretty obvious that the Universe/God is looking after me in my quest for this knowledge and experience. On days when I can't get out of bed or off the couch, it's difficult to 'see' that, but I have to believe that this has all happened for reasons beyond the scope of my intelligence.

So, the first thing I want to be upon waking every morning is grateful. And I am. A path is unfolding. New and wonderful people are coming into my life. Old and unsupportive people are falling away. And those doors keep opening. Such is the way when one is on a journey.

Stuck

I read a lot of inspirational stuff, and...I honestly try to inhabit each moment in my day fully, peacefully and with an abundance of gratitude, but this week I've been stuck.  

I feel trapped by my body; trapped by my cells; trapped by my environment; trapped...period.  It's hard to breathe when you feel this way.    I feel so trapped that I don't even have anything insightful to write about feeling trapped.

I know what I want, and it isn't THIS.

I want to be well.

I want to wake up every morning knowing it's gonna be ok.

I want to never have to call an ambulance ever again.

I want to be able to go out with ffamily/friends and not have to worry about someone's perfume or a piece of dust potentially hurting/killing me.

I want to drive a car.

I want to be able to take myself out for breakfast on a Sunday morning.

I want to never feel those all over 'body migraines'.  Pain sucks.

I want to sleep peacefully, without pain, anxiety or restlessness.

I want to never feel like a bear or 10 tonne boulder is sitting on my chest.

I want to be itchy free.

I want to be full of abundant energy.

I want my tongue never to know what tingling or swelling is.

I want to go a whole week without vomitting and gut pain.

I want my children to have their Mother back, in ALL capacities.

I want my husband to have his Wife back.

I want never to need this kind of cocktail of drugs just to keep me out of hospital.

I want white skin that never blotches or flushes.

I want to travel.

I want to take a bus, train or plane without fear of anaphylaxis.

I want to deal with paperwork that has nothing to do with ME and this failing body.

I want to be able to breathe all day, every day, without restriction.

I want to feel useful.

And the biggest 'want' that ALL people with Mast Cell Disease or Systemic Mastocytosis want...I want the old 'me' back, or some of it.  And I want to stop wanting that because it can't be healthy, productive or useful.

I want to stop resenting people with 'normal' lives. It's the simple things that you miss when you lose them...

I want to stop explaining myself to people.  Explaining Masto is exhausting.  My God, there are soooooo many other beautiful things to talk about and think about.

And, finally, I want to be free.  

Stuck is a lonesome place to be.  And in the middle of nowhere, with no driver's license and nowhere to go (and invites that you can't go to because they are high risk & your body isn't co operating)...well, it's hard to see the beauty in that, despite my best efforts.

See...stuck.  The roller coaster of Masto...up, down, up, down, up, down....

Mastocytosis Society of Canada

It's official!!!! The Mastocytosis Society of Canada is up, running and officially non-profit. If I'm permitted, or it's doable, will post a link on the side for anyone wanting to donate to helping us find a cure for this disease. Watch for our website in the coming months...we will be providing support, information, forums for discussion, Q. & A.'s, and helping you to know that you are not alone with this illness.

We will be instigating some fundraising endeavours for this worthy cause in the near future. IF you have any ideas yourself, please post a comment or email me with your ideas. We need to find a cure. This disease is real; it's debilitating and doesn't go away with positive thinking (despite my personal best efforts.)

There is important work to be done in this regard. Together, we can find a cure. We need to fund research and educate our world about this disease. I can't wait for our website to be up and running. Sharing our information, resources and ways to manage our lives is vital to our well being and for those that love us.

Prescription Cut Off

Well the big news in my Masto and allergy world is that our insurance company has cut me off of prescription benefits for the calendar year. Ouch!!! We have a $5000.00 limit per person per calendar year, so it was only a matter of time before this happened. Actually, we've done pretty good at stretching out the year that we had. In all fairness, I started this drug regime back in late February, beginning of March so we didn't get a whole year out of it. And, it looks like we're going to have to get creative in order to make sure I have these much needed medications throughout the calendar year, every year. Obviously, my paltry long term disability payments and my husband's Parry Sound job AREN't going to be enough to keep this family afloat. OHHHHHHHHHHHHHHHHHHH, this bites!!!!!!

Like all Masto and allergy patients, I've played games with my medications this past year. This is mostly due to denial that I actually need them or depend on them for my living another day; for avoiding anaphylaxis or near death. I had attempted to 'skip' doses or 'not bother' with Gastrocom ($380/month) and Ketotifen ($150.00/month), two of the more expenisve life saving medications I have to take several times daily but, I only got about a day and half of feeling ok and then I went downhill really fast and have, during each attempt, ended up in hospital in full anaphylaxis and it's been REALLY bad. So, it would appear not having these medications is NOT a choice. (I am, however, grateful that my medications don't cost $18,000.00/month like some cancer medications.)

Some friends suggested we pull together a fundraiser or something to cover the approx. $2400.00 we will need to get through to January 2010. It seems a bit odd organizing a fundraisser for yourself (a bit of bad form, I'd say) but I wonder if that's pride speaking? It was suggested on Facebook today that I add a Pay Pal 'donation' button to my blog page and as you can see by looking to the right of this post...there it is.

One friend suggested that if 24 of my good friends donated $100.00 each, we'd be covered. But $100 is a lot of money, especially with children to clothe, feed and put into sports or piano or Scouts.; or even just living on your own. But what about 240 friends at $10.00? (Oh my God, I can't believe I'm even having this discussion...asking people for money...this just feels wrong.)

The reality is this...we're in this pickle right now and I need to have some faith (and action) that somehow the funds for these medicines will emerge. We need to plan and maybe buy some extra insurance for next year so that we are covered for the whole year. And, I think it's time I started figuring out how to utilize what skills and resources I have at my disposal (this laptop for instance) for making some money so that I can take that "donate" button off of my blog page.

In honourable mention, I would like to add that Julie has come to my rescue already with a donation worth $300.00 for one of my medicines. I am utterly grateful to her and her family for this help. $2100 to go...

In the meantime, my job is to avoid triggers and to continue sticking to this insane restricted diet that IS working.

Thanks all, and I hope everyone out there is well, healthy, happy and good.

Blah But Good

Sorry I've not been around much. I've been feeling pretty good overall this past week or so.

Husband had to take care of a honey bee infestation in our house (exterior walls) that could've been deadly to me, and of course it's now primo wasp season. One sting and I'm done. Plus, summer has finally arrived and I can barely stand to be outside for more than 5 minutes. No moving to the desert for me, obviously.

I hope you are all feeling ok or fabulous.

Pretty good, for me, btw, means I'm not in hospital or have had a trip via ambulance.

I've had tremendous bone pain and some slight tongue swelling the past couple of days but overall, am better since adhering to the strictness of the combined low histamine and latex cross over food diet. I'm up to about 11 foods that I can tolerate, but finding creative ways to combine them is a challenge. Some days I just don't bother eating...what's the point? I get down about food. I love cooking and eating but the joy is gone.

My Mum is here visiting from Winnipeg (ok, Anola, MB) for a couple of weeks while my inlaws are in Ireland. I hope they are having a smashing time over there!!! (drink lots of whiskey!!!!) It's great having Mum here. This past week has gone, altogether, way too fast.

Antony, my hubby, is doing his CPR/First Aid certification this past couple of days. He didn't need any coaching when they got to the anaphylaxis portion.

I'm off to my second Reiki class tonight. Really looking forward to it, despite how new agey it might sound.

Will write more when my energy levels are better. xoxoxo

How Has Masto or Allergies Changed Your Life?

I'm just wondering, if you'd care to share, how Mastocytosis, Idiopathic Anaphylaxis or Allergies (Latex, or otherwise) has changed your life? Good or bad. Positive or negative. Large or small.

Thanks.