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, March 8, 2009

#39 - Peace, Be Still

Date Sent: Sun, Mar 8, 2009 at 11:30 PM

One Thursday evening, several months ago I was supposed to meet for prayer with the Women's Pastor and the wife of our Lead Pastor, but I ended up being almost 30 minutes late. Why? Because I was out in the parking lot considering committing suicide. I had gotten so discouraged... so overwhelmed... I felt so horrible physically that I couldn't tolerate it any longer. Finally I got out of the car and went inside. To be honest, what stopped me (besides God) was what people might have said afterward "How sad, she was just steps away from the church building, and a PRAYER meeting. Why didn't she just go inside and ask someone for help and to pray for her?" When I ended up leaving that evening (after praying with these women of God) my problems hadn't gone away. Some of those thoughts lingered. But instead of me wanting to throw in the towel, I was more determined to find a way for me to feel physically better.

If my memory serves me correctly, I phoned the doctor's office the next day, and he decreased the strength of one of the pills I took (which wasn't "supposed to need to be done."). Within 24 hours I began to feel better. When I met with the two ladies that next Thursday they both commented on the huge change in my physical appearance and demeanor. I wasn't "all better," and still didn't feel "good." But God had answered my prayers. I had come back from the edge and back to the point that I could at least tolerate it. That night as I prayed with them I silently pleaded with God not to let me get to that point of desperation again.

So, now you know the back story. Fast forward several months, and it's now February 2009. I suddenly began to show symptoms that my body's getting slightly too much medicine - I'm slightly "over-dilated." A couple weeks go by and it's now the beginning of March and more side effects have appeared. They're not intolerable yet, and not enough that my doctor would do anything about them. But they're there - hanging over me - constantly reminding me of that Thursday evening not so long ago. Most of them are just things I feel, but the main one that other people can see is a slight flushing to my face. For several days I've been pleading with God again - begging that His will ISN'T for me to feel as horrible as I did before. I'm not sure if I'd have the strength to go through it again.

This morning Aaron stayed home with Alex (who has pink eye), and I went to church with Harrison. On the way there I was pleading with God again. (My kids are going to grow up thinking their Momma's crazy 'cause she constantly talks with God as if He's standing beside her. Please note that I don't pray out loud about things the kids shouldn't be hearing!) I parked the car, and as I pushed the stroller toward the door I gave one final plea: "God, why am I getting red again? I know you give me strength for each new day, but I won't be able to survive that again. Dear, God, WHY?" Immediately the outdoor speakers (which were broadcasting the service that had already started) began to play "my song"...How great is our God! - Sing with me - How great is our God! - And all will see how great, - How great is our God. I started to tear up. Once again God used that song to answer the cry of my heart.

So, I went inside, took Harrison to the nursery, and phoned Aaron to tell him what wonderful thing just happened. Next came Sunday School and then a girlfriend surprised me and met me for second service (she was visiting from out-of-town with other friends). Today was communion. During the quiet time surrounding it my thoughts turned inward rather than just what Christ did for me on the cross. I thought about how "by his wounds we are healed" (Isaiah 53:5). I want to be healed. Once again I was asking God why I'm turning red again, why suddenly I'm getting all these unpleasant side effects. I was begging Him not to let me get to the horrible low point I had been at before - emotionally or physically. And then He spoke ... "PEACE. BE STILL." Immediately the quiet music being performed by the musicians up front changed to that same song ...How great is our God! Here are more of the lyrics... Age to age He stands. - And time is in His hands. - Beginning and the End. - Beginning and the End.

Once again I was crying. Why is it that in my humanity I keep wanting God to speed this thing up and just "make everything all better?" My mind knows that God's timing is always perfect, and He doesn't waste pain or suffering. But in my weakness I periodically just want this to be done. I don't know why it is I'm getting these side effects - it could be because I'm improving or because I'm getting sicker. But God reminded me that the future is in His more than capable hands.

In Mark 4:39, Jesus "...arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm." (KJV) All day today I thought I was the boat being rocked by the stormy wind and rough seas. But it just dawned on me that I was the person told that phrase today. Apparently I'm part of the storm causing the boat to rock. It follows that if I am still (and stop whining to God and working myself up with the possible unpleasant upcoming turns in the road) then there will be a great calm. Please join me in praying that I can follow God's direction: "Peace, Be Still."

~ Julia

Tuesday, March 3, 2009

#38 - God of the Inconsequentials

Date Sent: Tue, Mar 3, 2009 at 4:20 PM

I've had several answers to prayer regarding my health/situation recently, and I've considered emailing about them. But I haven't (until now). Sometimes I find myself thinking that "the small stuff" is too inconsequential to pester people about. But I'm so glad that my God is the God of the inconsequentials!

Item #1 - A couple days after I wrote the "Manna" email, I received a letter in the mail saying that there had been a change with our insurance. My continual iv medicine costs $126,000/year, and the pill I take twice a day costs just under $59,000/year. Our co-pay had been $50 for every three months. That was a HUGE miracle in and of itself! Well, this letter said that the company who supplied the medicine was now considered "out-of-network", and we had 90 days to pick a new pharmacy or we'd pay the whole cost out-of-pocket. Problem #1 - I received the letter in the mail 30 days into this 90 day time period - we now had only 60 days. Problem #2 - this is the ONLY pharmacy in the ENTIRE country who supplies both of these drugs. Problem #3 - we were having friends over a few hours later for Aaron's birthday party, and I still had things to do - this was NOT the "most convenient" time to stress about this. So, I took my own advice and decided that God (who owns the cattle on a thousand hills - Psalm 50:10), and provided the Israelites with manna, and has taken care of us so far wasn't about to abandon us now. I prayed about it and went on with the day's activities.

Well, the next day was Saturday, so I had to wait till Monday to phone the insurance company. Monday came and went, and finally Tuesday I started making phone calls. I felt like I was blindly being led around in a circle - no one had any concrete answers for me. So, I "gave up" and put it back in God's hands, and I waited to see how He'd take care of this. One week to the day after I received the letter saying my meds were no longer covered by insurance, I received another letter. This one basically said, "sorry - our mistake - ignore the last letter." Apparently what had happened was the pharmacy (Accredo) had bought out another smaller pharmacy, and that smaller one was "out-of-network". In retrospect, one week isn't that long to be wondering how we were going to pay for $185,000/year worth of medicine. But when you're going through it - it's a VERY long week! But through that experience, I was reminded to "cast all your anxiety on him because he cares for you." (I Peter 5:7) After all, if you're going to pray, why worry? And if you're going to worry, why pray?

Item #2 - As I already mentioned, our co-pay has been $50 for each three months. In January, when one of my medicines arrived in the mail, included was a bill for $125. In the busyness of life, I forgot about it, and when February's medicines arrived, the bill was now $250, and there was a note saying that since my account was delinquent I would receive no more medicine till it was paid in full. Well, I thought this was quite ...odd (considering what my co-pay was), so I started making phone calls. Apparently the insurance company changed some of their policies, and as of January 1, 2009 generics are the same co-pay they were the year before, but brand-name drugs are 3% of the cost up to a maximum of $125. (Well, in our case, praise God for a maximum - paying 3% could bankrupt us!) We weren't told about this change - it just happened. Well, there are NO generics for the two drugs I use - I tried to "argue" my way out of the co-pay, but to no avail. So, I figured God would take care of this somehow. And somehow he did! Our tax refund this year was big enough that we payed off a large bill we had. We had been paying MORE than $125/month on that bill, and now we didn't need to any more. God provided the money for our increased co-pay, but it wasn't how we thought He would. God always "thinks outside the box," doesn't He!?!

Item #3 - Well, this one wasn't so inconsequential. Early Sunday morning a couple weeks ago Alex and I were downstairs (Aaron and Harrison were still upstairs asleep) - and suddenly my pump started beeping this loud, obnoxious, never-ending, make-your-adrenaline-pump BEEP! It was warning me that it had stopped pumping medicine. (If you remember, this has only happened one other time in the past year). The doctors told me that even 5 minutes without this medicine could make me die on the spot - last time I survived the 6 minutes it took to get medicine pumping again, but Aaron was there to help me. Since there was no Aaron this time to help, I was extra nervous. And since Alex was there it was extra important that I didn't let my sheer terror show as I tried to figure out what was wrong, and what to do about it. So, as I pushed buttons and tried to get it started again I frantically prayed, "Dear God, please don't let me die alone in front of my son!" Alex thought this was awfully fun - he had never heard the pump be so noisy before, and he wanted to push the buttons too! Finally I realized that the pump thought it was empty, and shut itself off. So I reprogrammed it and it started again.

After the (seemingly deafening) beeping stopped, and I knew the experience was over, I had Alex go wake up Daddy, and tell him that "Mommy needed his help now, please." Alex did as he was told, and Aaron came immediately (the "now" always brings Aaron running). That was an answer to prayer in and of itself - Alex usually flat out refuses to wake up Daddy, and no amount of coercing him will get him to do it. (On the other hand, he LOVES to wake ME up when I'm sleeping!) So, I told Aaron what happened, and he took over "Alex duty" so I could sit there and get my heart to slow down from the adrenaline and let my body adjust to what just happened.

Since this happened, I've been "rosy" again in the face, and more out-of-breath than I had been for quite some time. But, as time goes on the side-effects of the abrupt stop in medicine are fading. Praise God for giving me a clear mind through that ordeal and bringing me through safely to the other side. "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me..." (Psalm 23:4a).

Item #4 - There are lots of "odd" side effects to the medicines I'm on. One that showed up probably two or three weeks ago (for the FIRST TIME EVER!) was nose bleeds. They've gotten progressively worse over these couple weeks, and the past couple nights (for example) I was waking up 3-4 times EVERY hour with blood running down my upper lip. They didn't last long, and there wasn't that much blood, but they had become almost constant - a little trickle of bleeding that just didn't want to stop. For the past several days I had been using a tissue probably every 10 minutes, and there was blood each time. Well, I pulled out the humidifier a few days ago (in case the dry winter heat was playing a role in them), and it didn't seem to help at all. Well, this morning at Bible Study one of the leaders asked for anyone with a need to come forward for prayer. I went. If me dealing with this constantly was God's will, then so be it. But it was a "new" side-effect, and I refused to just sit idly by any longer and do nothing about it. Well, a sweet woman of God (who I got to know a bit better this past Fall, and have come to really respect) came up front and started praying for me and the bleeding to stop. The image that was running through my mind during the prayer was the woman who suffered from bleeding and just touched Jesus' robe and was healed (Mark 5:24-34). At one point while we were praying I thought I felt blood about to run out of my nose, and I prayed a rebuke against the bleeding. I grabbed a tissue, and it was not blood. It's been SIX HOURS and my tissues haven't even had a hit of PINK on them! I fully believe that God has healed my nose bleeds!

Praise God that he cares about even the small details of our life. Nothing is too big or too small to go to Him about in prayer. He doesn't always answer our prayers with a "yes," or the way we expect, but He always hears us and answers our cries. I'm so glad my God is the God of the inconsequentials!

~ Julia