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

Gut Reaction

We went to friends for dinner last night. I brought my own food. The hostess, Peggy, made amazing Chinese food from scratch. I ate a bit of chicken (a small morsel) and had a maki sushi roll that only had carrot, cucumber and pollack rolled in rice and roasted seaweed. Ate a small amount of my homemade turkey stew (ugh...bored of it already...), so went and got Rice Krispies and had those with lactose free milk instead. Gut was hurting by the time I got to Krispies. I couldn't finish either stew or Krispies.

We did dishes and part way through, I suddenly felt like I was going to fall to the ground. So I quickly reached for a seat. Waited. Felt like I was going to fall down while I was sitting down, so sort of lyed down on the chair and reached for epi spray. Took a puff. Waited. Realized I was having trouble swallowing, so took another puff and waited.

My attempt to be low key and inconspicous didn't work. Mostly because my face had already started to go beat read. Then my neck. Then I got itchy. Then I was going to puke. Made a beeline for the loo. And hurled.

The host, Pat, is my District Fire Chief, oh sorry, was...I'm not on the Fire Dept. anymore because I had my driver's license pulled due to all these blackouts. He came in to the loo. He's responded to my house numerous times with his crew and the Paramedics this past year and half. He knows how this goes for me. My not wanting to go to hospital was obvious. He gently said to me that while I'm breathing, we know how this can go and he'd rather not be called out to Lori's house (where us girls were going to have a girly "Twilight" movie night) while he's trying to have movie night with all our kids at his house (with all the dads babysitting.) I said I was fine. He suggested, gently, that I let Antony take me to hospital. "If you're fine when you get there, you're fine. If not, you're in the right place." I said I was fine. Then he noticed my tongue scratching between hurls. "Your tongue swelling?" I showed him. "K," he said, "tongue swelling, let's get Ant to take you in, ok?" I said I was fine and that I thought I was done throwing up for now.

We went into the kitchen. Everyone was looking at me. Lori said first, "Let Antony take you in. We've got the girls. They'll be fine. Just go get checked. You don't look ok, hon." Erin said, "Seriously, we've got the girls. You're not ok. Fi, you know how this goes baby, please go in." Ant said, "Let's not fuck around, let's go." Tim said, "Fi, you're not ok. Your face is red and your itching your tongue. Stick it out." Peg said, "Yeah, you don't look ok." I stuck out my tongue. They ALL said, "ewwww, no it's swollen. Get going." Peg said, "it's really fat in the middle." Lori said, "and on the sides. Not good. Go." I said I was fine. They ALL gave me the same filthy look. "Ok, ok, I'll go..." I said, "but I'm fine."

I wasn't fine.

Had to use Epi pen on route in the car because while my gut was on fire and felt like someone was gashing my large intestines with a serated knife, my tongue was continuing to swell and itch. Then my face broke out in hives and I was scratching like a fiend. And I puked some more (into a bowl Peg and Pat gave me and said that I didn't need to return.)

We got to Emerg. Another lady and I arrived at the exact same time. I could walk faster than she could because I'm only nearly 40 and she looked almost nearly 80. She was wheezing. So, I politely said at the triage window, "You're having trouble breathing?" She nodded. "Oh, then you should go first," I offered, "I'm breathing ok right now." The triage nurse said, "No, you're having a severe allergic reaction Miss, please come round to the door and I'll let you in." That was the shortest triage visit I've ever had. I was directed, with a nurse and my husband holding onto me, into the rescuc. room. My usual bed. It's just wrong to have a usual bed at the Emerg. dept. My husband said to make sure they were holding onto me because my BP will drop and down I'll go.

I don't know about any of you, but Epi makes me need to pee really bad. And often.

"I have to go pee really bad" I said. Two nurses, now attending to me said my husband could take me and they'd get the meds ready.

And wham bam, I pee'd, was ushered into bed, stripped, cardio leads on, IV'd and pumped full of Benadryl, some sort of steroid and Ranitidine within seconds. Oh, Dr. Sit was on. She's dealt with me before (back in April when she was an Intern...and is now a full fledged doctor.) She ok'd the drugs without seeing me this time. She knows how this goes. She came in within minutes of me in the room. Commented on my hair and my new highlights, and asked what happened. I said it wasn't as bad as it's been as my lungs don't seem to be involved. Just gut and throat. "Still systemic" she said. Antony piped up that I'd almost fallen down several times too, but hadn't actually hit the floor. Epi was drawn.

And so it went...up and down. More drugs and fluids. And by just past midnight I felt sooooooooo much better, despite continuing to throw up all that time. I was allowed to leave when my tongue stopped itching.

A weird thing happened a few times. Machines weren't broken. But, I would get these full on dizzy spells in the bed and seconds later, the machine would PING that my RR's had fallen to 4 or 5 or 2 and then the machine would go apeshit PING PING PING & registered me flatlining and "0" RR; O2 saturation would drop to 85 or so. I felt like I was breathing but...was super dizzy and then all of a sudden my heart, followning the dizzy spell, would start racing, dizziness would disapear and RR's went up 27 or 26. Not sure what all that was about. One time it happened, I was in the middle of telling the nurse about my restricted food thing (she asked) and I got dizzy and suddenly couldn't talk. She watched the machine's go crazy, looked at me and said, "Are you breathing? The machine says you're not breathing." By which time, I was fine again. The nurses weren't sure of what to make of it.

I felt fine by half past midnight though, so they let me go home with the proviso I come back in if I didn't feel ok. So I left.

Today's recovery hasn't been near as brutal as some have. I've had to take a wee bit of percoset for bone pain and if I wait 4 or more hours between benadryl and Gastrocom, I get itchy and flush all over my face and neck. My gut has been hurting pretty bad all day. I can't really eat too much. I can FEEL where the food is in my large intestines. I can feel where it's moving to and is. Most disconcerting.

Anyway, it's been worse; way worse. But not much fun. I would like to say that the two new nurses that I had at Parry Sound Hospital, and Dr. Sit were such a breath of fresh air. They took the symptoms presented as serious and dealt with me instantly, checked on me every 10 minutes religiously and were sooooooooo caring. Felt good not to be treated like I was wasting their time. So thank you.

I pray that you've all had a MUCh better 24 hrs. And that your bellies are being kind to you.

Thank you for posting your replies, support and encouragement. It means the world to me and totally helps.

Post Shocking Fragility

Wee hoo, I got to live another week.

Yesterday was the first day that I finally felt human all week. Dr. Vadas wants to see me next week. I was finally able to keep some food down on Friday afternoon, and have been fine since. S'ok, I dropped 14 lbs during that week of turbulence. Not exactly the way to drop a few pounds, eh?

So, today I feel more hopeful, rested and like life is manageable. There's nothing like epi's, ambulances, resuscitation rooms and not breathing properly to make you feel a bit fragile. Which, describes, exactly, how I felt this past week. Fragile.

The awareness that you can break, and might in fact break, is eye opening. Not the kind of awareness I was seeking in this lifetime, but a valuable life lesson nonetheless. The closeness that we 'shockers' come to death so often is eye opening too. My awareness that I need to inhabit my days fully and enjoy what moments I have on this planet has grown exponentially in the past two years. Each reaction or episode brings me closer to exercising this reality.

So I stop and take time to smell the roses.
I stop and always have hugs on hand for my children.
I stop and have a cup of coffee, just because it tastes good.
I stop and listen to my daughter's theories on life and the world.
I stop and fuss the dog because she wants loving.
I stop and listen to friends' talk because, one day, they or me won't be here.
I stop and watch a whole movie now, instead of getting up a million times during it to clean and putter.
I lie in bed with my husband and snuggle, morning breath and all.
I talk to my chickens and delight in watching them rip apart tomatoes. They LOVE tomatoes.
I stop and make a loaf of bread. It's warm, feels great in the hands and everyone loves it.

I've stopped being in a hurry to get to the next moment. This moment, right now, is the one I inhabit, because that next one might not be there and no-one is actually gonna die, nor are we gonna lose any money if I worry about the next moment or not. So, not worth expending that kind of energy on it. And, this cup of coffee that I'm sipping while I write this tastes extra good this morning. I've learned to appreciate a body that works mostly properly.

Post reaction fragility comes with it's own gifts...appreciation growth. xoxoxo