Saturday, April 23, 2011

Making Good on Keeping Up

Here I am, keeping my vow to not be horribly neglectful of anyone kind enough to humor me by stopping by. (Don't go, I'll write! I promise)
This week has been a mixed bag of sorts. J is still fighting off the nasty cold that decided to take up residence in his little lungs. After days of mildly consternated indecision, it became evident he wasn't going to clear it on his own, so I bit the bullet and called the clinic. Our nurse proved she's worth twice her weight in gold when she told me we could get his Bactrim on a $4 prescription program at Wal Mart. I'm pretty sure I actually heard angels singing and the clouds may or may not have opened & spilled brilliant beams of light into my kitchen as I hung up the phone & finished loading the dishwasher.

As of tonight, he's not giving up whether he's getting better or worse. The snot factory in his nose has seemingly ceased production, but the one in his lungs has only thickened up. He's feeling happier, but still tires easily. Today we did unbelievable amounts of CPT, poor child got whacked six ways from Tuesday and the rattles just wouldn't give. We even did several sessions in Trendelenburg Position, or Postural Drainage,, with only limited success. If the overnight treatments can't wallop some of the crap out of there, we'll be headed for steroids in the morning.

While I don't by any means relish the idea of the possibility of this bout of illness going from yuck to worse, I do think we will at the very least make it through the end of the month and into the promised land of Insured May without having to go you know where. And no, I'm not going to say it. I've learned my lesson about not being a superstitious blogger.

On to slightly more fabulous news- on Monday, Mike held down the fort at our pizza fundraiser while I attended the nomination dinner for the Family Advisory Council at our Hospital. I am more than delighted to say we were accepted, and have some incredible opportunities ahead of us. Of course, I won't blog about details, but we will have opportunities to be parent mentors for newly diagnosed families, engage in ambassadorships and speak publicly on behalf of the hospital, and have influence in policies & procedures. My heart is so grateful to be in the position to help families suddenly thrust into the world of CF. I'll certainly never forget the days after J's diagnosis, how unbelievably hard even the small things became as we tried to make sense of a world that would do this to our baby. To be able to offer a hand, and lend an ear to someone going through those moments, and possibly help them to feel less alone's a serious privelege and responsibility. To be chosen as someone worth giving this responsibility to, in my eyes, is a great measure of success.

Monday, April 18, 2011

Murphy's Law, or Embracing Superstition

I knew it.....I knew it! Remember last post when I said all that jazz about not being superstitious and how relieved I was Jackson didn't seem to be showing signs of coming down with the nasty virus that has kind of kicked the rest of our butts??? You do? Then you won't be at all surprised to hear that he's now in full-on mucus mayhem. Nose like a faucet, red, teary eyes, constant cough, whiny (mostly because of frequent nose wiping), clingy, tired, and low appetite.

I am not freaking out. Part of me wants to set my hair on fire and run screaming through the streets, A very, very, small part. But the rest of me, the sane and smarter vast majority of me, is taking a more strategic approach. Breathing treatments every four hours, lots of airway clearance, lots of fluids. Keep an eye out for retractions, keep an ear on the stethoscope. Trust your instincts and hope it runs it's course. The snot coming from the drippy little nose is all clear, which is a good sign, and he's still feeling playful and eating regularly, if not as much. As long as these things don't change, we will let the virus do what viruses do and let his body fight it. Should anything change, the first call is to the clinic nurse, and the second is to our social worker.

Wish us luck!

Friday, April 15, 2011

Direct & Indirect, the Cause & Effect of CF on My Wallet, My Heart, & My Purpose

The quandary:

I have to be honest. I've been avoiding blogging, for weeks now. It's not that I don't want to share, it's not that I don't have anything to say. It's not that I've been particularly depressed or hiding out really...Attachment0_001

Things have been very high speed and very high stress, granted. We are passing the month of April on eggshells, completely uninsured. Medicaid did, in fact deny Jackson coverage, as our income is now too high to qualify. If I were to explain to you how much we currently make, and how much private insurance is going to cost us when it does kick in, the premiums, the deductibles, the co pays and out of pocket maximums....well that's still going to cost about 1/4 of our income. And the private insurance is positively slack-jawed & unable to tell us what they will and won't be able to cover for Jackson's care & treatment. They have decided to call in 'experts' to decipher their own medical plans. We have that cluster bomb to look forward to come June.

In the meantime, we will have CHIP coverage come May 1st, & nothing but nothing in the meantime. So of course, this is the time that a virus hits that left me without a voice & only able to sleep sitting up for 10 days, turned to pneumonia for Mike's aunt, & put his Grandmother in the hospital. Knock on wood, spit on the dirt, cross yourself & chant a blessing, J has shown no signs of it so far. I'm not superstitious, but I feel like even typing that is tempting fate. Our social worker has been more like a miracle worker and kept me from climbing onto a ledge during this maddening and frustrating waiting period. She has made sure we have access to enough meds to bridge the gaps in prescription coverage and that I know that even in the worst case scenario, I am not without resources. My heart aches for people in this situation without someone like that in their corner.

It's clear we can't go on like this. My husband is incredible, unbelievable, amazing, and outstanding. He would work every waking moment to take care of our needs, and sometimes, it feels like he does. It pains me to not be able to ease some of that pressure for him. I know there has to be a way to bring in more income & make a less desperate life for us. I've been twisting it around in my brain trying to strangle out a viable plan for months. We've never been wealthy, but we've never gone without. Never in a million years (cliche, right?) could I have imagined that we would find ourselves in this place, where a man who makes his living saving the lives of others couldn't afford health care for his kids. I know other CF moms who's kids attend some form of child care, and I commend you, I really do. And please don't be angry at me that I just CAN'T do that, not at this point. But not doing it has made working almost impossible to bring in any income. And even if I were to work outside the home, I'm short on marketable skills. Yes, I'm intelligent and able bodied, but the last several years on my resume aren't too impressive, unless you'd like a cocktail. (And I loved & was good at bartending but it's a practical impossibility with school, & activities, etc) And it's been so long since I worked in an administrative capacity that I'm not even sure I could be considered skilled anymore.

So my brain has been a rock tumbler, agitating, full of these facts, challenges, & ideas, and a positively insatiable desire to circumvent them all and come up with a perfect solution. And I knew, as I always know, that the idea would find me.


It wasn't my idea. And at first I didn't even pay any mind to it. In fact, I dismissed it completely. I put my feelers out to my circle that I was in need of some creative solutions to our income shortfalls. I got answers ranging from funny to ridiculous, to ultimately really helpful. But one of them crept back to me weeks later when I'd had no intention of heeding it at all. I know that CF has been nudging me to a calling. I know because of the unbelievable people I have met who have changed me, helped me, and made me better. My heart has grown, my priorities have straightened, and my path has become light before my feet. I want to HELP. I want to help people who are in pain. I began to study Reiki after several CFers and parents of CFers swore by it. I"ve since learned that Cancer patients and other people with chronic pain find great relief in it as well. A friend had mentioned I might be interested in a Massage therapy license during my quest for ideas. Out of the churning jelly in my mind, an idea solidified. If I could combine Reiki with medical massage, I could indeed help the very people I wanted to help. (& help my family get by to boot).

I want to provide Reiki based massage for pain relief to the very ill & suffering.

I began to research, and surely enough, there are people who do this. There is massage specialized for chronic pain, cancer patients, terminal disease, and other ailments. I began to research schools in the area , and after MUCH painstaking work, have found one, nearby, that is willing to work around our unusual schedule so I wouldn't have to find extra care for J. (Yes, my mind is BLOWN that they would be willing and able to do that!)

The last standing obstacle in this quest guessed it. It takes money to make money, right? The school ain't cheap. There is financial aid available for LMT certification, if you attend a technical college. Private instruction centers (legit, state licensed, but privately owned & operated) like the one I hope to attend aren't included in funding. Even the 'pay as you go' program is prohibitive in our current state.

I am not giving up on the idea, even if it has to wait, it will be an anxious and productive wait. I won't stop until I find a way to do this. We all search for purpose in the hard things, and I believe I've found my place of purpose.

I don't have the answer yet. And lucky you, I won't blog everything that crosses my mind and leave you with posts of this length. But I won't give up.