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.

Thursday's Thoughts & Not Me...

Brain fog has almost taken over my Being today. It doesn't help that I woke up in the wee hours of the morning with a blazing headache and vomiting. I didn't recognize this as a migraine right away. Mostly because it's not the right time of the month for me to have a migraine. Those people I know that are receptive to weather shifts and migraines weren't affected today...despite the hours of rain that descended upon us. I'm wondering if the wee bit of a Vodka cooler last night precipitated this onset? Or was it the one piece of KFC chicken (that I puked up minutes after eating...)? Foolish mortal.

I tried my best to function today with this pain and puking and horrendous bone pain. I puked up all my Masto meds., several times. So I stopped trying to keep them in. I tried taking Percoset after the regular Tylenol was returned to the world via the loo bowl. However, the Percoset only served to make me dizzy and the sense of spinning and nausea was tenfold worse culminating in yet more vomiting. I tried to sleep. I hurt too much. I tried to keep busy. I hurt too much. I walked around like a Zombie for a few hours, trying to do the dishes, make sure the kids were fed and happy, make the bed...tasks that wouldn't normally take that kind of time, but today did. It wasn't until about 1:30 pm that it occured to me to take a Zomig rapimelt. As Gravol both oral and suppository were returned to the world via the toilet within minutes of utilizing, I sort of thought Zomig was the last line of defense. My problem with taking migraine meds is that IF you don't actually have a migraine, these meds will give you a migraine...I was scared to make it all worse. However, I took it in the end and put myself to bed with a hot bean bag under my aching neck and heat pad on my painfilled stomach, bowl nearby.

The other thing about migraine meds is, IF you wait too long to take them, they take a long time to kick in. Which was the case today. It took almost 2 hours for them to kick in. But they did. And magically, I now feel normal. I've even managed to eat some rice.

Obviously, I feel well enough to look at a computer screen without wincing.

As some of you know, my weight has been an ongoing issue for me. I've spent this past two weeks logging my nourishment and exercise on this fabulous website My Fitness Pal.com: http://www.myfitnesspal.com This site is FREE, and helps you keep track of your eating and moving habits, and your progress...or as in my case, NON-progress. What I have learned from this logging is that I'm not actually eating enough. I go to bed most days with a ridiculous 600-2000 calorie deficit. My body thinks it's starving. Unbelievable, actually. I mean, I'm having a REALLY hard time realizing that I'm not eating enough, because I often think that I'm eating TOO much. Trying to fill up the deficit calories past 7pm at night is NOT the answer either. Anything we put into our bodies past this point, pretty much turns to fat. So, I've realized that I need to approach what foods I can eat (and the list is getting smaller and smaller) and attempt to get them into my body during the day, progressively and in small amounts. Since getting that hiatus hernia thingy at the end of April (caused from all that coughing and vomitting) I'm finding it difficult to eat any decent portion sizes.

There is a part of me that thinks ridiculous things like, "what's the point in eating?" because I often puke it back up or have it run right the way through me. You'd think, theoretically, that I'd be a skinny skinny minny by now. However, my over decade of bulimia as a young teen and twenty year old young woman hasn't helped my body any and has set the stage for 'starvation mode.' My body obviously thinks I'm starving it...and is storing whatever I am putting into it as quickly as possible.

I'm going to have to make a real effort to shift this. Somehow.

Planning might be key. Simplicity in meals.

My GP wants to test me for Celiac. I've done some controlled testing on myself with foods in the past few weeks and I'm absolutley gob-smacked by how much pain/vomiting or diahrrea gluten seems to be causing me. Not sure I even need to 'test' for it any further (but will because my good doctor wants to get a definitive answer on this...) because I'm infinitely better and healthier when I don't ingest this stuff. Not even dairy hurts me this much.

What I know is, I don't want to be THIS unhealthy and I feel myself spiralling...this isn't ok.

I'm raw. Emotionally, physically and spiritually. A person can't take this kind of a beating for this length of time and not feel worn down. This weakened human being that I've become in the past 5 or 6 years, maybe longer, is NOT me. I can't believe I barely have time or energy for anyone else these days. This is NOT me. Ready for bed at 5pm. This is NOT me. Barely any thoughts to string together. This is NOT me. No energy for drawing or painting. This is NOT me. No energy to listen to the woes of others. This is NOT me. Grumpy, withdrawn, exhausted and broken. This is NOT me. Too tired for Yoga. This is NOT me. Pain that is so deep that it's often not touchable. This is NOT me. Overweight and burdened. This is NOT me.

How many of us look into the mirror these days and wonder where we've disappared to? Sucked into the vortex of sickness? This is NOT me.

I know it's not you either.

Except...what is, is...and says this IS me. And you. So hang in there, k? I'm trying.

Tuesday's Trivialities

Let me begin with asking you to keep Dawn in your thoughts today. Masto bites. Lots of love and warmth coming your way Dawn...thinking about you.

The chickens arrived today. Ok, we had to go get them. But here they are.

That took the life out of me. Mind you, there were 60 of them. 24 for us; 36 for friends who loaned us the truck to go get them. The snow made it harder for us to transport them from truck to coops. My lungs still don't feel right but I'm breathing...

I'm having trouble seeing today. And, I've 'lost' time a few times today. I look super tired, black rings under my eyes...not myself. Eyes are sore. Feel like I didn't sleep, even though I know I did. Tongue is puffy. I'm itchy.

At least my tummy feels better. Now, if I could just keep warm.

Hoping your day is better.

Sunday

First off, little Gavin is having an endoscope this morning to try and find out the source of his internal gut bleeding and discomfort. IF you will, please keep him in your thoughts and prayers this morning, and hope for his doctors to find the source.

Gavin's Mom, Carla, keeps a poignant blog about her family's health issues and the journey with Masto and its complications. Today's entry is particularly poignant. Carla discusses her walk with tribulation and the comfort she's found in God. It's worth reading. Even if you're not God-fearing or God-loving. She manages to express the fragility with which we walk with illness, and those we love who have it.

http://mastomama.blogspot.com/2009/04/ah-alone-at-last.html

It was a tough week for me. I had a reaction (ironically at a Church) on Tuesday...I was attempting to have a 'day' in town. I was feeling strong when I left for town in the morning. And ended up in the Rescuc. Room in Emerg. by 1pm. I've been flaring up and down since. I flared up yesterday at the Christie District Fire Fighter's Pancake Breakfast. I wanted to go out and support them - even bursting into tears at my family's dispondency about getting there because "these people come out and save me all the time"...I started reacting within minutes of having a coffee and my eggs. Antony wonders if maybe they used a rubber spatula on the eggs in the kitchen. That's all it takes. Fortunately, got through it with 100 mgs of benadryl, and all the other drugs I have. I wasn't willing to use Epi, despite coughing because I wasn't gagging and in total distress. Just discomfort.

I got a lecture about this earlier this week. I saw Dr. Vadas in Toronto. He wants to see me again in two weeks. Around the same time that I have my bone marrow biopsy. He says I'm waiting too long to use Epi. Use it first...THEN chuck the antihistamines at the body to keep the reaction at bay.

He laughed nervously when I asked if he saw any reason why I couldn't have my driver's license back. I need to be reaction and blackout free for a year before we can even revisit this again. Ugh...THIS is the worse loss of personal freedom.

I'm wondering about staying here, on the farm. Antony has a good job here, with great benefits, and all that but I'm soooooooooooo isolated. And, to be honest...the friends that I have here don't make an effort to come to me. Perhaps though, this is because I make too much of an effort to go to them. And, apparently, it's dangerous. Wonder if they'll miss me if I am just not around? I'm starting to doubt it. I know this wouldn't be true of my Winnipeg friends. I get it that they are busy with their families...I'm just lonely.

Have to take my medication ON TIME. No missing doses, no not being regular. Dr. Vadas thinks this might have been part of the reason that I had a reaction coming out of knee surgery the other week. I'm to ask Dr. Smythe (Ortho. surgeon) whether they used Torodol on me. And, Dr. Vadas has put me on Gastrocom, to see if it helps with the gut issues I'm having. Have to take this 4 times a day.

Also, Dr. Hicks, in Winnipeg, has not forwarded the abnormal tryptase report to Dr. Vadas/Dr. Fischer. I have to get this for him. It'll be quicker than if he gets his secretary on it. So, this'll be part of the things I need to do tomorrow.

I'm tired of talking about my healthcare situation. There are sooooooooo many more interesting things to write about. However, this is my reality. We write what we know, right?

Post Reaction and a trip to see my Immunologist

I can't talk about it. Will try again tomorrow. OMG...WHERE have my words gone!?!?!?

Feeling Off

Not feeling so hot today. That'll teach me to have a sip of alcohol. I've been flushing on and off since (two nights ago), stomach distress and today, I feel like someone has taken a mallet to my body as well as sucked the life right out of me. Obviously a sip is too much.

Add to this that I've started on Ketotifen. Have to start at low dose, and increase gradually over a few days. So, yesterday afternoon was the first step up...so, not sure if my malaise/fatigue is due to the increase. Hopefully, it will even out soon. Ketotifen is a mast cell stabilizer and an H1 histamine inhibitor. I read yesterday, on Masto Mama's website, that her little guy is in need of this medication but that it's not available in the USA yet. I spent a good chunk of my night last night trying to think of ways to get it to her. Haven't come up with anything solid yet. She asks if anyone knows of good sources in the USA, to please let her know. Her blog link is in the top right hand corner of this page.

Also, my friend Dawn, in the USA, has been denied her social security claim. This is a huge blow to the little bit of hope that we Masto folks need to have. IF anyone is USA side, or even Canadian side, and has been awarded either Social Security or CPP Long Term Disability based on your Mastocytosis case, PLEASE email me: gypsyprincessa@hotmail.com, so we can help Dawn. I would like to put together a comprehensive list of arguments as to WHY this is vital, needed, deserved and necessary. Please share your story with me. Whoever is adjudicating her case obviously has NO IDEA what it's like living like this. I went through similar trials with my latex allergy claim (before we knew about Mastocytosis...either way, EVERY doctor I have encountered agrees that I need to be on Disability.) Dawn has tried every which way to remain 'functional' but this disease has got her beaten, and now the security system that should be there to protect her in such situations, isn't. I would say her Masto is far more aggressive than mine, and mine is bad.

Anyway, feeling like this means that I need to take it easy today. Maybe moving ALL the living room furniture, piano and tables around yesterday, and cleaning up the contractor's drywall carnage was a bad idea? The living room looks great though. The window guy should be by today to finish up framing out and trimming the three windows and door. It's a different world in my living room. However, after my bath (in a tote box...long story), I will be snuggled down in the family room with my Adult Education Theory books, putting together my next assignment. And napping.

For those living with Masto., or those loving those with Masto., and those living with deadly allergies, my thoughts and warm are with you today. Be safe out there...