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Patient Diary -- Joyce Iman
joyceiman@yahoo.com
Wednesday, January 18 2006
Welcome to a new diarist!
Welcome to Joyce Iman, a new diarist at PHCentral.
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Monday, January 23 2006
About to go on Flolan
When I was diagnosed in December 2004 and started researching my disease and available treatment, I told God that I could do anything needed but please don't ever let me have to go on Flolan. Now, I am knocking at the door of Flolan. Did my prayer fall on deaf ears? Absolutely not. In one month I will go inpatient for about a week and be weaned off the Remodulin pump and started on a new pump with Flolan. I'm sure it will become routine after a while just like my current pump but it looks very formidable at this point! How will I deal with the fear and worry I feel? I'm reminded of the acronym that went around several years ago - F.R.O.G. I will Fully Rely On God. My disease is progressing and my current meds aren't working for me. This is discouraging for me but I know it's not because God has abandoned me. He is carrying me through and will continue to be my strength. It's not any more God's fault than it is mine. This is just the way it is and I will do my best to glorify God in spite of my illness. God is so good! Today I was able to start phasing in Revatio and phasing out Tracleer. The adventure has begun!
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Tuesday, January 24 2006
A New Day
It's a beautiful new day and the possibilities are endless! What can I do today for someone else? I will send a card or make a call to cheer someone's day. It helps so much to get my mind off of myself. How easy it can be to become self centered when ill. Each day is a new adventure and a day to be thankful for. May everyone who reads this be lifted and have an absolutely fabulous day!!!
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Wednesday, January 25 2006
Yesterday evening I met another PH patient for the first time. I have been diagnosed for over a year and have emailed other patients but this was my first time to meet someone face to face. She has been on Flolan 3 1/2 years and gave me an education. I will go on Flolan next month. She is convinced it will give me a new life. I hope she's right! It sounds like being on Remondulin has been a good introduction. This is how I keep my sanity: "The longer I live, the more I realize the impact of attitude on life. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. The remarkable thing is - we have a choice every day of our lives regarding the attitude we embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I'm convinced that life is 10% what happens to me, and 90% how I react to it. And so it is with you. We are in charge of our attitudes." - Charles Swindoll
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Monday, January 30 2006
New Day, New Hope
The weekend was kind of nuts. My blood pressure ran pretty low (just started Revatio last Monday) so I was really tired. Didn't do much but enjoyed my family. My Remodulin site pain was worse yesterday than I've had in a while. That's one thing I won't have if I go on Flolan! I always try to look for the positive, no matter how small. Site pain is better today but still there. I have been a couch potato today, doing jigsaw puzzles on the pc and watching too much Matlock!! =) I would like to make some cookies but then I feel guilty - if I have energy to do that, shouldn't I clean the bathroom or something more productive instead? I constantly stress over how to spend my time/energy. Reaching a milestone today: This is my first day without Tracleer since early Jan. 05. Replaced by the Revatio. I hope it helps - not sure if I see any changes yet but it's just been a week. Each new day, each new week, month etc. is a chance to hope for improvement, new advances in medicine and new ways of tolerating.
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