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.


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