#46 - Fork in our Path

Date Sent: Mon, Jul 20, 2009 at 5:43 PM

Have you ever felt that you should do something, but it didn't really make total logical sense? I mean the decision wasn't a bad one, but it seemed like "odd" timing. Or if it didn't work out just right, then you'd experience a huge financial set-back. But, despite all the reasons for you not to do it, it still felt that you were supposed to....

Well, Aaron and I are in the middle of that sort of situation. We are facing one of those make or break, fork in the road points in our lives. We both think we know which path to take, we've just been waiting for the right (God's) timing. We've been knowingly waiting for eight months already. In early November Aaron brought up for discussion the possibility of a change in our family's life. At first I reacted the same way I have the last hundred times he's brought it up over the past two or so years. Out of frustration he finally said, "Just pray about it!" So, I did.

I prayed. And prayed. And prayed. And before long this time my heart began to change. Within a couple weeks I was actually excited about the possibility, and had complete peace even though it seemed impossible (financially, physically (energy-wise), etc.). But the PEACE was undeniable. Finally we brought up the possibility with our parents. And then after several more months told a few friends and asked them to join us in prayer. Finally - after SEVEN MONTHS of being convinced that despite the craziness of it, this IS the path that God has for us, we were given our final confirmation last week.

This past week Aaron was offered (and ACCEPTED) a job in Cranberry, PA (just north of Pittsburgh). It's doing the same thing for Verizon Wireless that he currently does - just in a new region with different management and co-workers. Cranberry is four hours from where we live now. It's 1.5 hours from our closest family (my mother), and it's really far from our friends, our church, and our support network. But it's only about 20 minutes (without traffic) from my doctor.

The economy is down. Our investments are worth less. Our townhouse is in a new development that is still building new houses. Why would someone buy our "used" house for the same price as they could buy a "new" one just down the street? Unless God works a miracle (which I'm living proof is possible) - then we'll lose money on this house - a lot of money. This move makes absolutely NO LOGICAL SENSE. But we both feel God leading us to Pittsburgh. And so we will go. When God told Abraham to pack up everything he owned and move his family to a place that God WILL (note the future tense) show him, that didn't make sense either. But Abraham obeyed, and was blessed for it.

Aaron's job begins September 1. Our house has now been listed. We are unwilling to buy a new house until this one sells. Of course our hope is that our house will sell, and we'll settle on a new house out there before then. But if not, until God sells our house and we move, Aaron will be staying at a hotel in Cranberry during the work week (which the company has generously offered to pay for), and I will be here alone with the boys. That prospect does not appeal to any of us. But, we are confident that God will work it out in His timing. If it takes longer to sell the house (rather than shorter), then it means that we have more time to save up money for the move.

So ........ if you know anyone in the Mechanicsburg, PA area who's looking for a 3 bedroom, 2.5 bath townhouse that's in still new condition - please send them our way! You can check it out HERE. Our next couple weeks are going to stay VERY busy - trying to sell the house, continuing the relocating process, etc. Please keep us in your thoughts and prayers. Oh - and ...

Congratulations, Darling.

I'm so proud of you!

#45 - ALL THINGS ... not just SOME

Date Sent: Fri, Jul 10, 2009 at 9:38 PM

And we know that ALL THINGS work together for GOOD to those who love God, to those who are called according to His purpose. Romans 8:28.

As I've slowly been increased on Remodulin (the iv drug I was switched to back in May), I moved from using one particular strength vial of the medicine, to a stronger vial. This was done so that as the dosage was increased, the cassette with mixed medicine would still last 48 hours. So, as I'm increased, sometimes the amount of actual medicine that's mixed with saline increases, and sometimes just the speed of the medicine being pumped into me changes. At some point a month or so ago it was necessary for me to start using a stronger concentration when mixing. When that happened, there was still one unopened vial of the smaller strength left. I never got around to throwing it away.

On this past Tuesday night when it was time to mix a new cassette, it was also necessary to open a new vial of Remodulin (one vial usually lasts just over a week). Aaron had forgotten that there were two different types in the box of extra supplies, and accidentally grabbed the wrong one. Tuesday night was also when I was supposed to increase from a dosage of 33 ng/kilo/min to 34 ng/kilo/min. So, I expected to feel "weird" for a day or so. But this time, I wasn't feeling more normal by Thursday, and commented to Aaron that I was still having a hard time breathing when I exerted myself (like going up stairs). Usually I notice that I have a harder time breathing for a day or so as my body adjusts, but this time around, it wasn't back to normal by day two.

Thursday night was my turn to mix, and as I pulled the opened vial of Remodulin out of the fridge, I suddenly realized WHY the last two days it had been so much more difficult for me to breathe. I saw that the paper on the vial was the wrong color. I immediately realized that I didn't have enough medicine - by a LONG SHOT! Aaron and I sat around the table in total shock and disbelief. After a couple minutes (around 11:30 pm) our heads stopped spinning, and we phoned the 24-hour number we were given in case we have any questions/problems. This definitely qualified! The man who answered listened to my explanation, and then put me on hold while he phoned the on-call pharmacist (who "just so happened" to be the one that always takes care of me). Her response was "that's too big of a decrease for me to be the one to decide what to do. Phone your doctor's office. If you can't reach them, then go to the Emergency Room. Oh, and you were at 33 ng, and ARE NOW AT FOURTEEN." After hanging up with them, I took a long, deep breath.

Before I told Aaron what they said, I asked him to compare how I was acting / how productive / how out-of-breath I've been the past two days with how I was when I was first discharged from the hospital having been switched from Flolan to Remodulin. He thought and thought. Finally he said that I'm stronger now. I have more stamina, and more physical energy. I'm definitely VERY out-of-breath, but it seems like I'm stronger than I was then. I smiled through my nervous tears because I agreed, but hadn't wanted to bias his response. I then reminded him that when I was discharged I was at TWENTY ng, and that the Pharmacist said that I'm currently at FOURTEEN. It was so late, and I had already spent two days at this dosage, so I called the doctor's personal nurse and left a voicemail that she would get first thing in the morning, and then mixed the new cassette at the same strength I was currently on. And then we cried. And prayed. And went to bed.

First thing this morning I received a phone call from my assigned nurse at the Pharmacy who was quite concerned for me. She asked me LOTS of questions: Have I been lightheaded? No. Have I been dizzy? No. Have I passed out? No. Have I been waking up at night because I can't breathe? No. Have I been unable to sleep at all because I can't breathe? No. Has it been difficult to wake me up in the morning because my oxygen saturation levels are too low? No. .... I have less motivation to get projects done around the house, but they've still been done. I've been taking more rest breaks. When I get to the top of the stairs I need to stand there and catch my breath before I continue down the hall. But that's it. Don't get me wrong - not being able to catch my breath is horrible. But I am functioning! The nurse was shocked, and a bit relieved that I'm not dying over here since I was suddenly getting LESS THAN HALF of the strength I was.

Later this morning my doctor's nurse (who I left the message for) phoned to make sure she had all the details before she asked the doctor what he wanted to do. She asked me similar questions. This afternoon she phoned me back with his instructions. Apparently his first response (after hearing how I am and am not doing) was for me to just switch back to 33 ng in one fell swoop. The nurse asked him if that is REALLY what he wanted. His response was "well, it took her two days to realize what was wrong, so it must not have been bad enough for her to be concerned. So, she'll be okay. She's a tough cookie, been through lots of these increases before. She'll be fine." The nurse advocated for me and asked if I couldn't at least two it in two steps so it's a little more tolerable. He agreed. Tonight (Friday) I'm supposed to increase from 14 to 24 ng. And then Sunday from 24 to 34 ng! YIKES!!! It's important to note that I've NEVER done an increase of MORE THAN ONE NG - AND THERE'S NEVER BEEN LESS THAN FOUR DAYS BETWEEN. I'm about to increase TEN ng, and then after 48 hours increase another TEN!

In God's providence, today's Friday, and Aaron will be here all weekend. I'll be doing the first increase soon after I finish sending this email, and then I plan to spend the next day (or two if necessary) in bed. And then after Sunday night's increase, two friends are opening their houses to the boys for Monday and Tuesday while Aaron's at work so I can recuperate without the noise/stress of young kids who don't understand why Mommy needs it to be quiet. Please pray for me especially hard during these next several days while my body adjusts. The side effects of a "normal" increase are unpleasant. I'm not looking forward to this.

But we're assured that "ALL THINGS (NOT JUST SOME) work together for GOOD to those who love God, to those who are called according to His purpose". I have no idea why this happened. I mean, I KNOW WHY - it's because I never threw out the old vial. But, I don't know what "good" will come from this. All I can see right now is upcoming uncomfortableness. But my God is bigger than that! I praise Him for His faithfulness over these past several days. I praise Him that I haven't passed out - or worse! I praise Him that I've been able to function (although much slower). And I praise Him for the currently-unseen way that this will work together for GOOD in my life.

Thank you for your prayers as I transition back!

~ Julia