Thursday, November 26, 2009

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.

Monday, November 23, 2009

Feeling Groovy

Well, ventured out on a small outing this past weekend, to a WalMart south of here in a more urban setting, with my Mum and the girls. My oldest daughter had a special birthday party to go to. I medicated before I went in...just in case & wore a mask. However, less than 10 minutes in the superstore and my tongue was tingling and I felt suddenly weak and light headed.

So, I told Mum to carry on with what the girls needed (and our small list) and I would head out to the car. Got that wonderful little pain in my right lung, that usually indicates my respiratory system is about to get involved. Then, I suddenly had to go poo and pee all at the same time...but needed to exit the building too. So, I raced out to the car. Just in time to chirp in the parking lot. Aren't I special to go shopping with?

It's amazing HOW quickly all these body systems are activated. I epi sprayed and took prednisone, and additional dose of benadryl, reactine, Gastrocom and directed by my Immunologist. Epi spray is the bomb, but it stings on the tongue. Prednisone makes me fat and bitchy. Benadryl zones me right out.

Mum and the girls came out to the car. I realized, at this point, the dangers in wanting to 'run away' and handle these reactions on my own. I do this. Run away. Or try to. Mum got to the car and said, "oh my God, look how red and blotchy you are!"...oh right, I was itchy too. I told her I needed a bathroom asap. So, we buckled and drove over to Tim Horton's, which is a mostly harmless place for me. God help the poor person who needed the loo after I was done in there. Post-surgical constipation alleviated in one small reaction....amazing.

My poor body. Recovering from this hysterectomy and having a flare up like this. So, I spent the rest of my weekend, recovering from this little outing. In some respects, it was good to 'activate' my digestive system as I'd been having post-surgery, normal, blocked bowels. Feeling all regular now. And was pretty much back to normal Sunday night....just tired.

I want to feel ridiculous for thinking I'd be ok for this outting...but as some good friends reminded me, it's normal to test your limits...especially when they are so limiting so much of the time. It's normal to hope that after a surgery of this magnitude that you'll be ALL better. Especially when you've been feeling so much lighter, so much more 'whole' and feeling like a bowling ball has been removed from your gut. It's just a bit of downer to realize that environments are still dangerous and hurtful to this body. Obviously, I still need to be careful, take my medications regularly and be smart about where and when to go places. Sigh...

Monday, November 16, 2009

All That Ick Is Gone...

Have been home a couple of days now, and am feeling unbelievably great post hysterectomy. Not sure now what I was ever worried about! Staff and Doctors at Orillia Soldier's Memorial Hospital were AMAZING, and they took great care of me. Precautions were taken due to Masto and my latex allergy, and I only had two anaphylactic reactions the day following surgery. Turns out it was my reacting, we think, to the antibiotic, Cephalax (I think that's how you spell it) that I've been given to ward off infection.

Now we know why I hurt so much.
I'm in less pain now, healing, than I've been in for about 7 years. Turns out I had pelvic congestive disease (not to be confused with pelvic inflammatory disease, which is an STD) which causes severe varicose veins in the uterus and pooling of blood; adenomyosis which is enlarged uterus where the endometrium fuses with uterus muscle and becomes enlarged because it sort of bleeds into itself; and then my cervix was hardened from all that weight and the size of uterus pushing down on it that it had prolapsed half way down my vaginal canal. My uterus was the size it would be if I was between 4 and 5 months pregnant and weighed about 4lbs. Doc says I would've hemorrhaged by about Xmas and quite possibly have died. Glad we got this done now. phewwwwwwwwww. Uterus is being biopsied. It'll be interesting to see if there were any Mast Cells lurking in there (and maybe causing the enlargement?)
Am on strict rest (even though I feel great), as not only had the uterus and cervix removed but he had to repair the ligaments and muscles that were holding the cervix in place under the uterus. They were stretched and badly damaged.
Mum is here for two weeks as I'm not allowed to do anything for 6 weeks.

Crazy...not sure how I'll manage that! But have to.

I would like to thank each and every one of you for your love, warmth, prayers, thoughts, light and grooviness. I felt completely loved and full of comfort going into the actual surgery because of you. Namaste.

Tuesday, November 10, 2009


So, you all know that I have an upcoming hysterectomy scheduled for Thursday November 12th. Approaching the knowledge that I will be wombless hereon in has been a daunting task for me. I've lovingly been told by close family members that 'if it needs doing, it needs doing'...but it's still been a bit of a roller coaster ride working through my own surging emotions regarding it all. I'm finally feeling better about it all today. Which is good, because the alternative for me is stressing so badly I end up with migraines and gut upheaval or worse, allergic reactions....Ohhhhhhhhhhhmmmmmmmmm, been finding my neutral space.

My children are a bit worried about me being 'gone' (at the hospital) for so long. Three to five days, I've been told. Let's assume I'll make a stellar recovery and be home as soon as possible. My oldest daughter is fretting the most. Normal. I remember when my Mum had her hysterectomy (I was 10) and was in hospital for a week, it did my head in. Mind you, it was a closer drive to the hospital for us than it will be for my children and husband/family. However, my oldest daughter IS looking forward to her Grammie taking her to Karate on Wednesday night. Apparently, Karate is awesome if Grammie takes her. My youngest daughter doesn't seem too bothered by what's coming up...she's quite comfortable spending a few days at Grammie and Poppa's house and looks forward to chalk drawing on their paved driveway, as well as "spaghetti!!!!" I'm grateful, very grateful for my inlaws continued support. They've been absolutely stellar in this regard.

My Mum is coming out from Winnipeg for 2 weeks to help out with me, the house, the kids, the animals and making sure my husband gets a lunch. She managed to find unbelievable seat sales on flights from Winnipeg to Hamilton for a scant $89.00. Thank you West Jet!!! While I was all cool for recouping at the inlaws, I'm glad I'll be able to be at home, in my own home, for recouping. I'm going to have to find homes for a pile of my houseplants today or tomorrow as my Mum is allergic to them. Am trying to get all the laundry and house sorted out today/tomorrow. Although, my husband reminds me he can use the facilities and I shouldn't worry about it's sort of natural to want to get this all sorted out beforehand, right?

So, all in all, this week is sort of all about the hysterectomy. Hope it goes well.