Tuesday, October 27, 2009

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.

Saturday, October 24, 2009

This Week

This week has been a good week, overall. Imagine that...do as your Doctor tells you & use the knowledge that you've been learning in your quest to be healthy: avoid triggers and if that means being house-bound, so be it; don't eat foods on the lists (histamine containing and latex cross over concomittant); sleep; drink water; exercise in moderation (so as not to cause a reaction); find things to be joyful about and embrace those things; love fully, passionately and without regret. Be what you are, now. As you are. Stop trying to be EVERYTHING to EVERYONE. Stop setting yourself up for failure, but continue to dream of what you CAN do...

The strings on my yoga pants are longer today. My breasts look bigger to me, because the flub underneath them appears to be shrinking.

I've given up trying to make the few foods I can have, taste good. So, it's easier to pick at small bits of salmon, kamut bread with blueberry or blackberry or raspberry jam (raspberries are on the 'reactive' list but they've NEVER hurt me...), sauteed onions and garlic, squash, peas, green beans. Odd bit of chicken. Just to nourish myself.

What I am doing, is cooking for my family. Portioned for 3. Served with love. Prepared with love, gratitude and the desire to nourish the bodies of those I love.

I'm grateful for my Motherinlaw, who brings over baked treats. This way, I don't have torture myself with making them. Things like Brownies and cookies and muffins are difficult to make without wanting to 'cheat'. And 'cheating' makes my body hurt.

I should pick up some kamut and sourgham flour. These don't hurt me. I tried baking cookies with Quinoa and they tasted bitter and unrepentant. Even spiced with ginger, they were horrid.

I want to feel THIS good everyday. And my wish is for each of you to feel this good too. xoxoxo

Sunday, October 18, 2009


I had a pretty shitty week last week. Didn't end up in hospital (yah!) but came close a couple of times. Had a couple of days there where I was both scared and frustrated that I couldn't just shake the feeling 'odd', the feeling 'fat' or 'swollen', itching, pain, and sheer exhaustion that filled me up. Used more epi spray than I have before, and it worked. In my quest to be 'normal' I realize I must be fooling some folks because I heard this phrase quite a lot this week: "But you look fine" or "But you seem fine". Yep, that's me...feigning fine.

For short periods of time. But if you consider that this is the length of time people who do see me, see me, it's not that crazy that I "look fine". Benadryl has a 4 hour window for me.

Guess that Drama degree I have is paying off.

Besides, nobody really wants to hear that you feel shitty.

Monday, October 12, 2009

Couch Potatoe

Greetings from the couch.

This isn't where I ordinarily spend my time. Ordinarily, I am running or puttering around cleaning up after my family. However, the past few days have been one of those 'not quite right' episodes. Nothing drastic has occurred but I feel like I'm on the edge of a big ugly reaction and am trying to keep the storm at bay. Tongue feels fat at the back (goes down with epi spray for a while and that comes back feeling all thick), it starts tingling (stops with epi spray), my gut has been on fire all evening tonight, felt like I was going to fall down (and didn't! Yah!), acid reflux (that I don't normally get), some lung pain and horrendous bone pain. I feel weak. I am exhausted, but can't sleep. I flushed several times today, the bright red ring around my nose and cheeks, leaving my center cheek bleach white. Very odd looking. And I'm itchy...the unscratchable itch. The itch that moves all over the body, under the skin & feels like it's inside too. Unscratchable.

I've taken all my meds, and as instructed, have doubled up on some. I feel sick to my stomach (haven't puked yet...yah!) and just feel 'not right'. We don't go to the hospital for 'not feeling right' unless I can't breathe; can't swallow or have passed out. Felt close to all those things today (and some yesterday) but it hasn't gotten out of control.

So what brought this all on?

Could've been the initial perfume on some woman in Tim Hortons (where I'm usually ok for short periods of time). I got itchy tongue, all over body itching, running nose and eyes within seconds of her scent getting up my nose. I was standing in line. I used my epi spray as discreetly as I could. I got up to the counter to order and both nostrils literally let go. Blood. Haven't been feeling right since. Have had a bunch of nosebleeds like this, spontaneously, since. This'll teach me to say out loud that I've been well for over 5 weeks now. Wellish.

I mentioned before this combination low histamine and latex cross over foods diet has been improving a number of things. For one, I'm not puking near as much as I have been this past 2 years. I'm experiencing less bloating and gastric distress. Less bone pain. Clearer mind function. No full on anaphylaxis. My tongue has even reached normalcy. It was like being reintroduced to an old friend: "Hi Tongue, wow you look great!" Not today though. It's swollen, cracked, has the little red sores that appear on it when I'm reacting, and...is fat.

My good friend Kim, in Winnipeg, sent me a great book recently called The Maker's Diet. The author has cured, yes cured, himself of Crohn's Disease. I have a good friend locally with this disease so I've seen how crap it is. My little brother has it too...he's managed to improve his symptoms with a combination diet and Naturopathic care over the years. The book is really cool. The author, who is Christian, has gone back to the Bible seeking guidance, and examples, of foods that our Biblical forefathers ate. They lived much longer lives than we do. And not living in our toxic world, obviously weren't aggravated by the side effects in our quest for 'convenience'. I'm a fair chunk of the way in. Some of the stuff outlined in the book isn't rocket science...to those of us who are, have been, or beginning to be chronically 'ill'. While everyone would benefit from eating this way and living the ways outlined in the book, it's not for everyone. Some of us feel we can't 'give up' our 'convenience'. However, for those of us who've HAD to give up that 'convenience', there's some good advice to be heeded inside the covers of this book. So, I'm trying it. I've got nothing to lose. I am unable to eat a bunch of stuff in the 'recommended' section due to the latex cross over and low histamine thingy but (perhaps not so surprisingly) most of the 'do not touch' lists are foods and things I need to avoid regardless.

There are some things in this book that I didn't know about till now. HSO's, little organisms found in dirt and such can be beneficial to all human beings. I have to be careful with mold spores and such but he suggests gardening as a good way to get your fill of HSO's.

So, what have I changed this past week or so, since getting the book?

1) I'm combining bentonite clay (in liquid form...I tried the dried stuff before and could never get the ratio right enough to be able to palate it) with psyllium (ok, orange flavoured Metameucil...it's what I have and we have to be careful about money right now.) It's gently removing any residual mercury or other heavy metal toxicity I may have left floating around in this body. (Mercury, is another LOOOOOONG story in my 'getting sick' journey...for another day.) The psyllium is removing the sludge from my intestines and colon. It's working. And before you suggest it, I don't think this is aggravating my symptoms this episode. It was definately that woman's perfume that triggered me....if we can pinpoint ONE thing. I feel no discomfort with this cleansing concoction. Drink it on an empty tummy at night before bed...cleaned out and on the loo by morning. I'm going to keep doing it. I feel improvement in the digestive area. Once my batteries are charged and changed on my scales, I'll see if my 'feeling' lighter has translated to physical lightness.

2) Am no longer consuming pig products. At all. Ironically, the pigs we've grown on our farm this past summer, that are almost ready to go to 'get dressed' (Nov. 25th) will not be eaten by me. Perhaps for the rest of the world this is ok, but for 'sick' people, it's one of the first foods you should eliminate from your diet. They are 'bottom feeders' (like lobster, crabs, shrimp, clams and oysters.) The book's stand on this is that 'bottom feeders' are "unclean" (garbage in; garbage out) and that the Bible clearly ascertains that man shall not eat pig. I've asked some Christians about this (who eat pig) and they tell me it's more 'custom' than anything; they tell me that back then there were no refrigerators to keep the meat from rotting and it rotted quicker than say a chicken; they tell me it's a guideline...not necessarily to be taken to heart. Interesting that other passages or instructions are taken to heart, but not this instruction. Where do you draw the line? Well this book says you draw it where God says so. Do not eat pig. If you're reading this, and you're Christian, I'd be very interested to hear your take on this subjecct.

3) Chew your food really slowly, with intent and permit your body to have the time it needs to prepare the digestive enzymes that will help digest what you shovel in. I'm doing this...chewing 30-70 times per mouthful...and what I've discovered is, I can't eat as much as I used to. Don't need to.

4) Get sleep. (Oh, says I, on the computer at 12:30 pm)...for every hour before midnight that you get to bed, it's like having an additional 4 hours of real sleep. Apparently. I'm up right now because I had a flare up and I have trouble sleeping on these nights. Ergo, I'm on the couch. I also pee a lot more when I flare up, so I'm nearer to the loo. But, I do need to get going to bed momentarily.

That's as far as I am. Lots more in the book to talk about. And if I find any other useful hints, directions and such, I will post them. I'm already doing a bunch of other reccommendations (cutting caffeine; relaxing, etc.) but I'm thinking there must be something IN this approach. If God has truly offered instructions and guidelines for living healthy and long, then we might want to heed His advice? Interestingly, The Qu'Ran's guidelines aren't that much different. Nor are Orthodox Jews'. So...maybe it's true that the pigs function on earth, much like the shrimp or lobsters fucntion, is to clean up and not be eaten? For me, for now, this 'garbage in/garbage out' approach makes some sense...and I often throw pig back when I eat it, so I don't eat it much anyway. I know that our pigs have been fed well, but the stuff you're buying at the supermarket has come from a feedlot where ALL the waste goes, so that's what you're eating. I wouldn't feel good about that, no matter how it's smoked or prepared. So as much as I love a bacon sarney/sandwich, it's no longer a choice for me.

Must get some needed sleep now. I hope you each are well, happy and loving your lives. And if you're Canadian, I hope you've had a fabulous Thanksgiving weekend this past weekend. I'd like to thank my Mother in Law for a gorgeous turkey dinner yesterday. It looked amazing. She makes it look so easy...another thing I aspire to do well in this lifetime. Happy Thanksgiving. We have a lot to be grateful for.

Justify Full

Friday, October 2, 2009

Give Thanks!

I am feeling incredibly full of love right now (even though I'm barfing up a lung, itchier than hell and feeling woozy.) The kindness of friends and some family members has been unreal regarding this prescription medication crisis that we're in.

I am honoured to report that since putting that little button (to the right) up on this blogsite, we have collectively pulled together $1110.00 (and some family members are in speaks with me about adding $500.00 to that...) which is TWO months supply of all the drugs I have to take!!!! Talk about incredible!!!

This leaves an additional $800.00 or one month's supply to sort out. HOW amazing is that!?!?! Three days ago, we had 3 months to sort out. And now, we only have one month to sort out.

At the urging of some Masto. folks, I've contacted Costco to see if their medication pricing will bring the costs down, so that we can get more bang for our buck and need less.

I also checked this week into whether our insurance company would/could transfer unused prescription credits from other family members on the plan to me and the answer was a big fat NO. It was worth pursuing though, as some company's do this.

Have got the Trillium (Provincial funding) application filled out...just need some documentation from our pharmacy (done) and from the insurance company (requested.) This funding will hopefully help us for the next calendar year with out of pocket medications that would kill us financially otherwise. IF funding comes through, retroactively, from Trillium (for now) I would love to be able to give the money that people have donated to us/me back to them OR (if they want) put it into a fund with the Mastocytosis Society of Canada (since I'm involved) for other people facing this kind of ugly crunch.

Overall, this outpouring of love and financial aid has lifted my spirits exponentially. Not because I love money but because purchasing these life-saving drugs isn't optional and facing financial uncertainty (omg, we can't afford these!) puts such a massive weight on a person's shoulders that it can feel impossible to breathe. I know the look on my husband's face when I told him our prescription coverage, for me, had been cut off and the massive burden that he immediately started carrying when he muttered, "Oh...shit..." I've been talking about my responses to this outpouring of support and love, but he is equally sharing in my sentiments. He can't believe how amazing you've all been.

For our American friends who are wondering why our incredible 'universal healthcare system' isn't covering these drugs...the system doesn't. It IS fantastic for when I need to see my doctor or have to go to Emerg. (more than the average person) and for seeing Specialist's, etc. but we have to buy additional insurance to cover prescription drugs. For us, this means through my husband's work. We pay a monthly premium for this coverage.

So...THANK YOU. From the bottom of my Being, thank you. xoxoxoxo