In February of 2008 I was diagnosed with an incurable, progressive and terminal condition called Idiopathic Primary Pulmonary Hypertension (PH). In retrospect, we can trace this illness back to at least January of 2004, but you can have it for several years before you notice any symptoms. My diagnosis came after I was hospitalized for what ended up being almost three weeks - spent consecutively in three different hospitals - two of them being in ICU units. Over the past year we have been sending email updates to family and friends concerning my medical/physical journey as well as lessons I'm learning as a result.
These are those emails. There's no rhyme or reason as to when I send out another email update. It just happens when "the Spirit moves." But whenever I write and send one, I will also post it on this blog.
(Most) people on their wedding day mean every word of their marriage vows. Of course they hope that their marriage will include a lot more "for richer" than "for poorers." But when you've got a terminal case of "wedding-day love," you think that love is really all a couple needs to beat the odds and happily survive 50 years together. I think this naivete can be a good thing on a wedding day (to a degree). The happiness of the moment should be enough. But, life doesn't stay that simple for long - there's bad morning breath even on the honeymoon. And as soon as you get home there's a stack of bills waiting in your mailbox. Suddenly reality hits - that one of the biggest differences between life BEFORE the wedding and life AFTER the wedding is that now it's more complicated. Suddenly there's two sets of bosses who expect overtime, and little Johnny's stuck at day care. When you're living LIFE it's awfully easy to forget your marriage vows and just throw in the towel when things get tough and "less romantic."
It's not easy to be in your twenties and not be able to take a shower alone. I don't mean a "honeymoon-style" shower. I mean a real shower. It's not easy to say "Honey, I can't bend to wash my legs. Would you mind helping me ... again?" or "I'm sorry you're out of clean boxers, it hurts too much to do the laundry." It's hard to pick up and comfort your toddler who just tripped and bumped his head - when you know the act of picking him up is going to hurt you exponentially more than he's hurting at that moment. As a mother, you do it anyway. But it's hard. When does life get easier? Sometimes it seems like it's just a trade-off. One month your checkbook's in the black ("for richer"), but you feel like you're drowning "in sickness" troubles instead. OR - - - How do you stay positive and supportive when your spouse is having these struggles? It'd be so much easier to just walk out and not have to deal with the tough stuff. I guess he really meant what he said on that snowy evening almost 6 years ago.
Yeah, so obviously my transition to sub-q Remodulin has been a rough one. There have been only three times since I was diagnosed (almost 2 years ago) that I seriously considered "quitting." One of them was this past month. I haven't decided which is worse - not being able to breathe or excruciating pain. But the combination ....... It's gotten better, at least. I was told that 50% of people on sub-q Remodulin have some pain, and that after each time they place the sub-q they can expect some pain for the first 6 days then it'll just "turn off." But if they can just "push through" those 6 days, they might be pain free for six weeks. On a scale of 1-10, the pain of my first placement was a 14 - and it lasted 12 days. Then I had about a week (where I frantically caught up on laundry, cleaning, grocery shopping, etc.) before it fell out and I had to start all over again. A friend suggested (from experience) that I try placing it in a different spot. That one was MUCH better! The pain only got to a 7 or an 8, but it also lasted 12 days. My doctor has explained to me that "this needs to work." According to him, I'm NOT going back to the other type of infusion because the blood infections could kill me. (He doesn't want me to die - what a great doc!) But, the idea that any day this whole 12 days of excruciating pain could start over again - for the rest of my life (or till God decides it's time to heal me)...... That's a tough pill to swallow. I've had so many "good days" and "bad days" the past several years that I've learned to deal with TODAY, and hope that tomorrow's gonna be better. But lately I've allowed myself to become bogged down by fear - fear that the horrible pain might start again tomorrow. And fear's not something I've struggled with so far in regards to this illness. Fear can be debilitating - or at least it has been for me.
I've been given this path to walk - this is my life. Whether or not it was what I dreamed it would be like - it is my reality. But this past month I've stopped walking the path. Don't spiritualize this and think that I've backslidden. I haven't. I haven't taken a side-road either. No, I took one big side-step off the path and curled up under a rock. I hoped that if I hid there long enough this pain - this fear - this insecurity in my ability to cope with the cards I've been dealt - that it would all just go away. But it didn't. No matter how I tried to avoid it - my reality kept slapping me in the face reminding me of what I was trying to avoid. It just made things worse. Rather than just dealing with the pain, I was also dealing with insecurity, fear, hopelessness.... These past several years have had some high highs, and some low lows. But trying to escape my reality - questioning God - and considering "exit strategies" - that only compounded my problems.
It's taken me a long time (and several good sermons from our "new church shopping" church visits) to get out of this funk. Okay, well, to be perfectly honest, I'm not 100% out of it, but I'm almost there. This past Sunday's sermon (from church #3 we've visited) was on HOPE. I cried through the whole service (what a GREAT first impression I made!). I had lost hope - not hope that God will heal me. No, worse - I had lost hope that I could survive this path long enough for Him to get around to it. I wasn't sure I could survive the day. But one of the first sentences the pastor said was "God is still in the business of offering and instilling hope." Well, that did it - I had to get out two more tissues.
The pastor didn't talk about "casting all your cares on Him because He cares for you" (I Peter 5:7). He didn't talk about having faith that God will see you through the tough times - just keep looking for that silver lining. He got right to the matter (in my life) - he talked about God breathing life into that which was (or felt) dead. I know that I'm not the only person to have felt so discouraged. Right in Ezekiel, it talks about how the Israelites (who were in exile) felt the same: " 'Our bones are dried up and our hope is gone.' " (Ezekiel 37:11b) But God promised: "I am going to open your graves and bring you up from them; I will bring you back to the land of Israel. Then you, my people, will know that I am the LORD, when I open your graves and bring you up from them. I will put my Spirit in you and you will live, and I will settle you in your own land. Then you will know that I the LORD have spoken, and I have done it, declares the LORD.' " (Ezekiel 37:12b-14) Surely you've at least heard of this passage - there's a children's song about "dem bones, dem bones, dem dry bones." Well, it's based on this passage.
I find it reassuring to me that God didn't tell Ezekiel that He was gonna make everything better, that He was gonna make all their problems disappear. He was talking about (metaphorically) resurrecting DEAD bones ... they weren't people who were "floundering" - they were DEAD - had given up ALL hope. (I haven't gotten quite that far yet - I am still breathing, after all.) It was the restoring life - restoring breath - restoring HOPE that showed that He was the one true God. Well, I needed some serious restoration. And He's lovingly started the process.
How? He gave me a sermon about HOPE when I was hopeless. He gave me a husband who washed my legs when I couldn't. And He gave me perspective. I've contemplated several times this past month if it's worse not to be able to breathe or to be in excruciating pain. Well, Christ experienced both at the same time (the final cause of death in a crucifixion is suffocation because the person can no longer lift them-self up to inhale). And he did it WILLINGLY - FOR ME.