#25 - My rainbow

Date Sent: Tue, Sept 16, 2008 at 3:34 PM

One particularly confusing thing about my dealing with pulmonary hypertension is that when I'm sick I don't feel good - - - when the medicine is doing its job, there are lots of side effects and I don't feel so good - - - when there's too much medicine for my body to handle, the side effects get extra intense and I don't feel good. Sometimes it's really hard for me to know if I'm progressing (ie getting better), or getting worse because either way I don't feel so great. Two side effect of chemo (for those who have cancer - which praise God I don't have) are violent nausea and losing your hair. The medicines I'm on don't have those kind of blatant side effects. The side effects I have are because the medicine I take (both the Viagra and the constant iv medicine) dilate my blood vessels - so all the side effects are the result of the "healthy" blood vessels in my body (remember, the only "sick" ones are in my lungs) being dilated too. But since they're all connected, the only way to have the ones in my lungs dilated (which is what needs to happen) is to dilate all of them in my whole body.

My last email mentioned that my doctor in Pittsburgh told me to only take half of the originally prescribed amount of Viagra. This is because the side effects were too intense - not that I couldn't "cope" with them, but they were showing that the "healthy" blood vessels in my body were being dilated too much. After decreasing the Viagra, I had a good week or two. Then life got rough again. I was exhausted all the time - spent two weeks barely having the energy just for a daily shower, let alone being a mom/wife/house-cleaner. Well, this past Friday, the doctor's office in Pittsburgh phoned to see if I was doing any better. Since I wasn't, they said he wanted to see me on Monday. (yikes! - it's always really scary when a doctor says he wants to bump another patient so that he can see you!) So, my mother drove the four hours back to our house to watch the boys, and Aaron and I drove to Pittsburgh Sunday for Monday's appointment. I wanted the doctor to see the whole picture of how I'm feeling, so I took my Viagra not too long before the appointment. That way he could see how I was physically reacting to it these days.

As soon as he walked in the room he noticed all the physical "side effects" - I was red, the bumps that are on my arms/legs/back, etc. After talking to me and listening to my heart and lungs, he said that it was really good that he was able to see me with his own eyes. I am NOT having an allergic reaction, but the bumps ARE caused by the medicines (they're a side effect that's not as common as others, but it is okay that I have them). I am currently taking 19 ng of the iv medicine - that's not really all that much (he has some patients who take over 100!). He said that everything I've been feeling lately is because my "healthy" blood vessels are OVER dilated (he said that the exhaustion was because not enough blood was getting to my brain, etc.). The iv is much stronger than the Viagra, so the iv stays and the Viagra goes - NO MORE VIAGRA FOR ME!!!!!!! He "didn't expect" that to be a problem since I'm on such a relatively small dosage of both drugs - but our God is the God of the unexpected blessings and miracles! Do you understand how HUGE of a miracle this is!?!!??! God's healing me SO MUCH that the doctor has STOPPED one of the two drugs that are medically keeping me alive! There aren't words strong enough to explain the amount of joy that's bubbling over inside of me!

THERE'S MORE - After he did his exam, he said that my heart is healing SO MUCH (it's MUCH quieter than it was in June when he saw me last), and it's obvious that the dangerous pressures in my lungs are also LOWER (though definitely not normal yet)! So, I'm allowed to have some coffee again (I had been sneaking it now and then when I was so exhausted just to try to get through the day). And I may INCREASE the amount of sodium in my diet! When I was discharged in March I was taking 20 mg of Lasix every day to counter the amount of swelling in my hands/legs (this was caused by my right-side heart failure). The past two or so weeks, I've only taken one pill (the morning after a pizza binge). He said that I "can't have as much sodium as a normal American gorges on," but I can increase the amount I consume. Now the restriction is to follow what my body's telling me - if I swell, decrease sodium until the swelling goes away!

A while ago, God had told me to accept help from people to do the basic things I need done - cleaning, laundry, childcare, etc. But my pride got in my way - as I was getting stronger, I had done more myself instead. Last Wednesday (before I knew the medical reason why I felt so horrible), God told me that He brought me to a place where I would be forced to obey (I was exhausted and at the end of my rope). Now that the doctor told me that those tough times were because of TOO MUCH medicine - a sign that I'm getting BETTER, not me getting sicker, it would be easy for me to renege, and not do what God instructed (again). But, I've learned that lesson. I'm finally allowing more people to help (it can be really hard for a "giver" to accept being a "receiver").

Last Thursday I met with two ladies for prayer, and ended up crying about how tough the past two weeks had been for me. I wasn't complaining or whining, I was letting down my emotional guard and admitting that I needed physical help and emotional support. I mentioned that I've learned that whenever there's a trial/set-back/etc., there's always a hidden blessing. God has something GOOD in store for me (and for you too). But after two weeks of misery, I still didn't see that blessing. I knew it had to be there somewhere, I just didn't know what it was, and was getting discouraged because I needed to see something positive coming out of the pain. The ladies encouraged me keep trusting God to remain faithful - He's brought me so far already, He's not about to just abandon me now. And of course, there was a blessing - I just needed to wait for the doctor to see me to tell me what it was. Now that I've stopped the Viagra I already feel better. Once my body gets used to it NOT being there I should feel even better again!

I'm taking a Bible study on the book of James. Today we discussed the first eleven verses of chapter one. Here's part that's always meant a lot to me, but has new meaning now that I've been going through this "medical trial": "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. (James 1:2-5). It's awfully hard to view the tough struggles we face in life (sickness, huge disappointments, loved ones not following the God they once knew, financial difficulties, work stress, etc.) as PURE JOY. That's something that I've been working on this past week. I still haven't mastered it - I've got a long way to go - but I'm learning more about how to do it. Joy isn't happiness - it isn't a feeling - it's a state of being, a CHOICE.

Even when all we see are storm clouds gathering around us ready to let loose, there's a hidden blessing (a rainbow) - SOMEWHERE. DON'T QUIT LOOKING UP - NOT UNTIL YOU'VE FOUND THE BLESSING THAT GOD HAS IN STORE FOR YOU BECAUSE OF THE STORM (NOT IN SPITE OF IT).

Keep looking up!

~ Julia