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.

xooxo
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

Tuesday, September 29, 2009

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.

Friday, September 18, 2009

Food n' stuff

I hate to admit it but this bloody diet that Dr. Vadas has me on, is working. It's great BUT the list of foods I CAN eat is sooooooooooooooo tiny. I shouldn't complain...I mean there are things I can eat. This is the second time this year that I've gotten through a menstrual cycle without being in the hospital. YAH!!!!

This has me looking at food completely differently. For one, to realize that foods that we all take for granted that are part of most Western diets work like poison in my digestive system. This week I had a reaction (not anaphylaxis) to peeling potatoes, with Nitrel blue gloves on. I needed a mask too, I guess. Hives, itching, runny nose and eyes and that pain in my right lung. Same thing with the banana's and custard the other night. One whiff of that gorgeous smelling, just right ripe banana and I was the same.

Tongue has been puffy since. Tonight, when my husband and I went on a date I got itchy and those weird 'spots' that show up on my chest appeared with a big ring of red splotch around and over them. Tongue got tingly. With meds taken, it all died down within an hour or so. I was just sitting in a movie theatre (a small local one that I have trouble at/in) when it started AND I'd taken Benadryl prior to going in to offset anything.

Bone pain set in about an hour later.

So, now it's almost 1 am and I've got two eyes rolling in polar opposite directions from all the medications...

Overall though, this diet IS agreeing with me...no matter how much I dislike the lack of variety in it. I'm learning to cope with new strategies and with elimination of lots of stuff.

Emotionally, I'm a lot calmer and at ease these days. Very little bothers me (because if I let it, then I end up twice as bad...) and I'm not sweating the stuff that I can't control. For a control freak, this is no small feat. Being controlling isn't serving me, at all. Genuinely being at peace IS serving me well.

I've also enrolled and am doing Reiki Level 1. My teacher, Leah Wood, is AMAZING...a far cry from the crusty, miserable, pain-filled, chain-smoking woman she was when we both worked for the local municipality. She's a COMPLETELY different human being. Quite an incredible transformation actually. Like all things, she showed up in my life to teach this to me at just the right time. Turns out I've been doing this sort of thing already but I'm learning some cool techniques, and...to trust the 'healing' that channels through my humble hands. I'm glad that I'm not 'doing' anything so much as 'sharing' love and light. The toughest thing so far me has been permitting others to touch me. This makes me cringe. I am learning to 'receive'. And, it's been nothing short of incredible. We should all be touching each other a lot more, in this secure, safe and non-sexual way.

Namaste.

Thursday, September 10, 2009

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