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 ranitidine...as 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...

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.

Hysterectomy and Scopes

I was called on Friday to let me know that my surgery has been booked. Hysterectomy. I have, on top of EVERYTHING else, this rare condition called Pelvic Congestive Syndrome. Which basically means I have varicose veins, pooling blood, inside my uterus. My OBY/GYN tells me it's a matter of time before they rupture and hemorrhage. He's been telling me this for 5 years now. I've been trying to 'fix' this in other ways...to no avail. I'm basically in chronic pain in my lower ab region, all the time. Menstruation is hell. But, like all women, I get through it. There is also some thought that perhaps, just perhaps, I might have mast cells lurking in my uterus. Unusual, but they are showing up all over the place. Today, I just learned of a woman who had mast cells in her skull. After feeling ill for a while, and complaining of severe headaches for over a year, they relunctantly did an MRI and ta dah!!! A mass. When they went in to remove it, it turned out to be a mass of mast cells hanging out in bone marrow in her skull. Her bmb in her hip had showed nothing. So...ya know, crazy shit happens.

So, surgery is slated for Nov. 12.th. Apparently I can expect a 6 week, recovery period. eeek. I'm not very good at sitting still. Apparently, it can REALLY mess you up if you don't rest. Bowels and bladders end up sitting in the wrong places. Things like that...

So pre-op for this is Nov. 2nd, next Monday, in the afternoon.

Today I was called by the surgeon's office, who'll be doing my gut scopes (in response to my calling my GP's office to see where we were at with this because I can't imagine having a gut scope on top of an hysterectomy!) I see him on Monday Nov. 2nd too, in the morning. Scope will be scheduled for sometime between Monday and Nov. 12. They want to get this done before the hysterectomy.

Scoping will be both top and bottom (oh joy....) and they will be taking biopsies along the entire tracts for mast cells, checking for crohns, colittis and celiac scarring.

I hope ALL of this reaps some reprieve, some answers and some relief.

WHAT the hell is this like for my kids to have a 'sick Mom/Mum'?!?!?!? This is no way to be a mother.

It was my birthday yesterday. I turned 40. Yesterday my youngest daughter hugged me and nose to nose she smilingly said to me, "Mommy, for your birthday wish, you should wish that there is no such thing as Mastocytosis. That's what I wish for." Then she added that there should be no latex in the world either.

Yes, little lady, that's exactly what I wish for.