Welcome to A Million Miracles.

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.

Sunday, February 1, 2009

#10 - "Rain drops keep falling on my head..."

Date Sent: Thu, Mar 27, 2008 at 6:06 PM

The following email update has been very difficult for me to type, and I don't know why. I keep typing and deleting, and starting all over again. I have literally worked on it for OVER four hours, and at this point I'm going to just send it as is.

The last two days have been "good" days for me. Then suddenly this morning I woke up and it's NOT a good day. I kept thinking about why this would be true. Did I do something different to cause today to be so rough? I remembered that last week I sent out an email asking for extra prayer, and made the comment that "I don't think the rain is helping much either." This made me think (it's raining again today). So, I just got online and did some research (isn't the internet FABULOUS!). Sure enough, high humidity thins out the air, making it harder for people with pulmonary hypertension to breathe. Well, thank you God that we don't live in Seattle or London! Now I know to plan easy days when it's supposed to rain.

So many people comment on how "good" I look. This is because of how far God's brought me!!! It's hard to allow people to watch you struggle. After church services on Sunday I go home and spend most of the rest of the day resting. I go to the doctor's office, and then come home exhausted. I conserve my energy for when people are around. So, just because I "look good," please don't think that it's time to slow down praying for us. PLEASE PRAY!!!

We are a very private family. Maybe it's time for me to be a bit more "open" about my daily realities. The PRIDE in me is RELIEVED that only a few people saw me when I was critically ill in the ICU. Even fewer people saw me at home before I was hospitalized. In order to pick up Alex's toys in the living room I had to crawl ever so slowly across the floor and put everything higher (on the couch, or a chair) and then struggle to stand up. After resting (and huffing and puffing) for at least ten minutes, I finally mustered up the energy to begin to put them back where they belonged. Only Alex saw me (day after day) stare up the steps with tears running down my face as I wondered if I'd be able to make it up them to put him down for his nap.

I should have REALIZED that something was SERIOUSLY wrong with me. But I didn't. Instead I continually put myself down for how out-of-shape I had "allowed" myself to get. God keeps reminding me that I need to forgive myself for those thoughts, but it's difficult. If you hear something often enough (even if YOU are the person saying it), it's hard to forget. This is why I've gained so much weight since I got married (sorry, Aaron...) four years ago - my lung capacity was too small for me to tolerate exercise. I had thought (and been told by others) I was just lazy and needed to do something about my weight. "If you exercise more you'll feel better." I JUST COULDN'T, but I couldn't explain why. I just knew that I couldn't do it. God has TRULY BLESSED ME with a husband who NEVER - NOT EVEN ONCE made any comment like that to me. He never even changed the way he LOOKED at me and my fatter body! Thank you God for my AMAZING husband!

I still have "good" days/hours and "bad" days/hours. The fact that my mother is doing the childcare, laundry, dishes, etc. helps me to have lots more "good" ones than the "bad" ones. So do all the people who have faithfully brought us meals, groceries, and done all the household cleaning. God has healed me so much already, but when I look at the list of things the I'm not the person doing, I'm reminded of HOW MUCH He still has to do. I desperately want to be able to run my own household - I'm 28 years old - I should be able to at least do that (never mind having a job or a social life)!!! But I can't at the moment. That's incredibly humbling, even humiliating sometimes. I know that I need to let my body heal, and hopefully it will continue to. Pushing myself will just make me sicker and make the healing process take longer. But it's really hard to pace myself! I want to do everything. But I just can't.

From a medical standpoint I'm not going to get better. That's really scary for us to hear, and even scarier for us to live out on a day-to-day basis! Pulmonary Hypertension is TERMINAL. People who have "hypertension" can continue to live practically indefinitely if they watch their diet, exercise and take medicine to control their high blood pressure. I do not have "hypertension" I have "pulmonary hypertension". There is no cure, no long-term treatment for this. When we are born the timer begins to count down our days until we face our eternity. Unless God intervenes and FULLY AND COMPLETELY heals me, my timer is quickly running out.

When I was in Hershey Medical Center (the first time), God TOLD me that everything will be okay, and this will end. I had no idea what I would have to go through before that happened, but I was convinced it would. After receiving this unexplainable peace from the Holy Spirit, we were told the diagnosis and the seriousness of it. The next two plus weeks brought a lot of REALLY HORRIFIC days in the hospital. I was able to cope with them ONLY because I was convinced BEYOND being convinced that God's promise would stand - that there will be an END. I don't know if I will struggle with this illness for one more month, or one more decade, but He assured me that it will be OKAY. Lately I have started to doubt the assurance He gave me. But the Bible says that "He who began a good work in [me] will be faithful to complete it." The waiting for that completion is proving to be much more difficult than I imagined it would be.

This past week or so I've been working on tackling the LONG list of thank you notes for all of the kindnesses we've been shown through all of this. I think I've mailed notes to 50 people, and I'm not even half done! (If you aren't one of the people who have gotten yours so far, please continue to be patient - my wrist is getting tired. **smile**) Maybe half of these are to people who are acquaintances or strangers to us! As I wrote note after note, I was humbled YET AGAIN! Our faith has been tested in ways we never imagined possible through all of this, and God is still good! He keeps sending encouragement after encouragement to us.

I truly believe that everything happens for a reason, even if I can't figure out what that reason is. We think that one of them for this situation is for the strengthening and unification of Christ-followers (and some "not yet" Christ-followers). SO FAR, we have been informed of people in 15 states and 8 countries who are lifting us up in prayer. Even though most of my days are spent within the confines of this small house, I am not isolated. We've been told of so many people who have renewed or deepened their relationship with Christ because of this. It's only human (and NOT a sin!) to ask the "why" and "why me" questions. If these hard times that we're going through help strengthen our faith, and the faith of others ... then I accept this trial. (Wow - that was hard to type!)

May God be as kind to bless you as He has blessed us lately.

~ Julia Feitner

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