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.


  1. I commend you and all you do for your son. I have 2 sibilings and 1 has CF and I know the struggle my parents have gone through trying to provide the best medical treatment. It ain't cheap!! One thing I thought of, that may have already been suggested to you for some extra cash, is if you have friends who have children, you could offer to watch them. Like a daycare in your house, then J stays with you but you could collect a fee for watching other peoples children. I hope you find a break from all the finacial stress soon. Thinking good thoughts for you and your family!

  2. I believe you're on the right track. Which school are you looking into?

  3. G, I'm looking at the North Texas School of Swedish Massage in Arlington. It is truly ideal, provided I can make it work!

  4. What about a career is writing? You may not have have the background education for such but you surely have the skills!!!! Hope you find even more answers and things continue to get better.

  5. Thank you Sandy! Writing is a continual pursuit for me, and as soon as someone will pay me to do it, I'll take them up on it!

  6. Sorry it took me so long to come here, I guess I missed your tweet broadcast. You're doing great! BTW, if it's any consolation, with our insurance and meds, we have paid 1/4 of our income in medical and 1/4 on mortgage after property taxes rose, so I can and will definitely empathize with you if that's the course you take. I'm like your husband and did work every waking hour, but you know how that went with me and my CF.

    You two will undoubtedly find creative solutions, as we have. We (Beautiful, too) are around by email if you ever want to bounce things off ppl who have had to be very creative to survive.