A heck of a lot, and nothing at all. Lots of stress, though, plain old stressful!
Beautiful and I have been having a heck of month with her allergies after getting back from our Labor Day break in Ohio. She went off her allergy meds that week to prepare for her allergy test the next Wednesday (now last Wednesday). You can read about those experiences on her blog in much greater detail than I care to re-create here. A quick synopsis that explains my absence is easy, though: she had a scary reaction during the testing and the visit, along with a previous balance, came out to a couple dollars short of $1,000! Thus, I’ve been a very, very busy and stressed Fatboy.
I’m sure we aren’t the only CFer family out there with these feelings, but perhaps I can lay them out for discussion since we’re all friends here. Do you or your spouse (going either way, regardless of who has CF) feel like they are giving up some portion of their life dream for a period due to CF in the family with a fear that the sacrifice will be permanent? We hopefully all have dreams and goals, but CF just seems to find a way to throw a monkey wrench in the works.
For us, this dream has been placed on hold until I can bring in some serious cash, and that really bothers me. It bothers me to the core, and those of you who know me in person may have an idea why. I am far from lazy and would likely be pegged as both an over-achiever and a workaholic. I can be a severe workaholic if Beautiful doesn’t remind me of my family priorities and obligations, not to mention not working myself into an early grave from exhaustion and infection. That sure won’t see our dreams realized! I work (previously work and full-time college) because I don’t want laziness to get the slightest grip. I could lay around all day and watch TV and become quite accustomed to that. I sure do enjoy that lifestyle on vacation, but I don’t want to give anyone the opportunity to label me as different or associate my activity level with CF.
It horrifies me to think that there may be a day in the future where someone will ask why I don’t work and don’t leave the house because I’m on “the list.” We have finally come to grips that it is a very real possibility that I will need a transplant someday, but the hope of keeping myself healthy with diet, exercise, and medicine is pushing me to prepare for that day so it doesn’t affect us beyond me being sick for a period of time followed by surgery and recovery and then get on with our lives with a renewed vigor.
Any idea how much that costs sitting where we are today? I am figuring that (as long as I can continue working from home up until surgery) it will come out to around $50k in lost wages and expenses for the 6 months surrounding surgery. That’s a pile of cash and it cleanly scares the junk out of my trunk. On top of that, there is the whole discussion/matter about having kids and how that will happen and how much that will cost.
So there you have it – that’s why Fatboy has been too busy to write or be on Twitter. It’s not just getting things done at this point. My mind is full of mush, muck, and more negative things than I would care to admit to. While I share a great deal of it with Beautiful, to dump all of what is in my brain on her at once would be unfair and unproductive, so I usually have my “down day” once every week or two now. I’m unaware of why I’m down half of the time, but the next day, I get an idea based on where my thoughts were for the previous 24-36 hours.
So… what’s up with you guys… on the inside, that you haven’t shared on your blogs or on Twitter?
You sure re-ignited some memories, Jesse. It’s not just CF adults & spouses who feel the stress. There were countless times when you were growing up, and especially when Rachel was alive and I had lousy insurance and small paychecks, that we wondered how we’d meet our obligations. Your mom sometimes had to be pretty creative with meals. We got bailed out by family more than once and the Lord supplied in other ways too. He never let us down and we never starved or damaged our credit rating. Those stressful times can be worse than 2-a-day football practice. But they do toughen you up for the future and make for compelling testimonies to God’s faithfulness to His redeemed. Let me know if there’s anything I can do. I love you.
It’s mostly frustration at the lack of margin in our budget until we get a couple of things settled, the disappointment that every time I earn extra, something (without fail) comes up, and the housing situation that has us trapped an unable to re-fi or anything – so we are stuck from every corner and unable to get to “the next thing” in life b/c $10k, $30k, and $50k should be so easy for me, but crap keeps happening. GRRR!
The same happens with us. Every time we get a little extra cash flow to help catch up, something new shows up and destroys our plans. I probably should write keep a free word press or blogger blog private so that I can let out my negative thoughts. I mean, who would want to read that? I’ve got a lot. My mother is the main source of my frustration and stress. My mind is boggled daily on how someone can be the way she is without provocation. J is a serious workaholic and no amount of reminding that he has other priorities changes that. He is always fearful that something will happen with his health leaving us financially inept. On a positive note, his CF doctor approved the Zenpep today. I am excited to see how that effects his digestion. He loves pasta and all that comes with it, but his current enzymes don’t get the job done. Thankfully he gets the HS7% free with the Zenpep. Jesse, if it wasn’t for your site, I wouldn’t have found the information and resources to increase J’s compliance. I know that doesn’t put food on the table, but hopefully it can brighten your spirits and get things moving in a better direction. If not, a cute video from a 2 year old can be sent anytime. 😉
Yeah, what tried to destroy us was a perfect storm of my IVs in February not being under last year’s deductible (I thought it renewed annual in April), our mortgage going up $400/mo because of taxes, health insurance going up $100/mo, and then Beautiful actually using her health benefits all the way up to the deductible amount with the allergies. Of course I’m not upset that she got help, because she needed it badly, but it was getting to be “when will this end?” We should have a minimum of $8k in good news from hard work this year, but it’s all gone to the above institutions. Sooo frustrating!!