A Big Decision
For those of you who do not know me, I'm going to state some facts before I describe what my BIG DECISION will be. For those of you who do know me, these facts will help you understand things, too. lol Here goes!
*I have pulmonary hypertension, PH for short. It is a rare lung condition, in which the blood vessels in the lungs constrict, making it very hard to deal with every day life. It's almost like having high blood pressure, only it's in the lungs. There is no cure YET, only several different types of medicine that can be used to help treat PH.
*I have had PH since I was a baby, along with congenital heart disease. I have two holes in my heart. In all honesty, I grew up going to the cardiologist about my heart, and not too much about the PH because there wasn't much they could do for the PH. Even today, they are learning so much new stuff about PH than they did years before!
*In April 2000, I had to quit my teaching job. I was doing very badly health-wise. A year later, I started going to the Cleveland Clinic in Ohio. At first, I was going to discuss possible lung transplant surgery. After a couple more visits, and a yes to a transplant, they put me on a new medicine. It was only out in the public for a year. I started on October 12, 2003. After a while, I began noticing an incredible difference in how I was feeling. Transplant talk was pushed to the back burner. Yay!
*There is an incredible association for people with PH. It's called Pulmonary Hypertension Association. It is wonderful, and I am on there at least two or three times a day checking the message boards. I feel like it's a community, only over the internet. I'm not sure I'll ever meet any of the people I chat with. But at least I know there are others out there like me, going through the same crap. I just wish I knew if there was one here locally. Locally would be in the Buffalo, NY area.
*My medicine is delivered to me by FedEx once a month. The pharmaceutical company that I go through is called Accredo Therapeutics. They call once a month to do my refill order, and ask if I have any questions for them. This past month, I did. I asked if there were any support groups in my area of Buffalo, NY. The nice man told me he would have the community advocate call me, because she wasn't available. I said ok!
*Today, I get a call from the very nice community advocate lady for my area. She tells me that, unfortunately, the closest support groups in NY for me are in Syracuse, Albany and Long Island. These are no casual trips, people. Some of them would be quite a drive. Although it would be worth it, I'm hesitant.
*The nice advocate lady suggests starting a support group in Buffalo. She tells me there are a LOT of people with PH in Buffalo, and how nice it would be if someone started a group here! She said I'd get a lot of help from her, and from the PHA people. They even have support group starter kits. I tell her that I'll think about it.
*So now I am thinking about starting a support group. The idea is so appealing, yet so scary to me. I do not start things up. I know I was a teacher for a few years, but that was dealing with KIDS. These would be ADULTS. Adults can be scary!! lol I know I would be getting a lot of help with this. It is intriguing. I need to think about it though.
I told my mom that for a while now, I have felt that I'm not doing anything with my life. What am I supposed to be here for? My original plan backfired on me, and it was devastating. Of course, I have my health, and I'm a lot better than I was five years ago. But what am I supposed to be doing? I almost feel like I'm wasting time. That being said, I told my mom that maybe this support group thing is just what I need to do. I told her that I'm going to pray about it. I'll call the PHA, and ask for the starter kit packet, if only to just look at it right now. And then I can decide if I want to start a support group or not.
I almost think God might have already told me the answer.
Written by melonlady1724 . Link to this entry
This entry has 1 comments: (Add your own)
I was going to say... ask for the kit and decide from there... looks like you are ahead of me Comment from maidothemist - 5/19/05 10:53 PM
*I have pulmonary hypertension, PH for short. It is a rare lung condition, in which the blood vessels in the lungs constrict, making it very hard to deal with every day life. It's almost like having high blood pressure, only it's in the lungs. There is no cure YET, only several different types of medicine that can be used to help treat PH.
*I have had PH since I was a baby, along with congenital heart disease. I have two holes in my heart. In all honesty, I grew up going to the cardiologist about my heart, and not too much about the PH because there wasn't much they could do for the PH. Even today, they are learning so much new stuff about PH than they did years before!
*In April 2000, I had to quit my teaching job. I was doing very badly health-wise. A year later, I started going to the Cleveland Clinic in Ohio. At first, I was going to discuss possible lung transplant surgery. After a couple more visits, and a yes to a transplant, they put me on a new medicine. It was only out in the public for a year. I started on October 12, 2003. After a while, I began noticing an incredible difference in how I was feeling. Transplant talk was pushed to the back burner. Yay!
*There is an incredible association for people with PH. It's called Pulmonary Hypertension Association. It is wonderful, and I am on there at least two or three times a day checking the message boards. I feel like it's a community, only over the internet. I'm not sure I'll ever meet any of the people I chat with. But at least I know there are others out there like me, going through the same crap. I just wish I knew if there was one here locally. Locally would be in the Buffalo, NY area.
*My medicine is delivered to me by FedEx once a month. The pharmaceutical company that I go through is called Accredo Therapeutics. They call once a month to do my refill order, and ask if I have any questions for them. This past month, I did. I asked if there were any support groups in my area of Buffalo, NY. The nice man told me he would have the community advocate call me, because she wasn't available. I said ok!
*Today, I get a call from the very nice community advocate lady for my area. She tells me that, unfortunately, the closest support groups in NY for me are in Syracuse, Albany and Long Island. These are no casual trips, people. Some of them would be quite a drive. Although it would be worth it, I'm hesitant.
*The nice advocate lady suggests starting a support group in Buffalo. She tells me there are a LOT of people with PH in Buffalo, and how nice it would be if someone started a group here! She said I'd get a lot of help from her, and from the PHA people. They even have support group starter kits. I tell her that I'll think about it.
*So now I am thinking about starting a support group. The idea is so appealing, yet so scary to me. I do not start things up. I know I was a teacher for a few years, but that was dealing with KIDS. These would be ADULTS. Adults can be scary!! lol I know I would be getting a lot of help with this. It is intriguing. I need to think about it though.
I told my mom that for a while now, I have felt that I'm not doing anything with my life. What am I supposed to be here for? My original plan backfired on me, and it was devastating. Of course, I have my health, and I'm a lot better than I was five years ago. But what am I supposed to be doing? I almost feel like I'm wasting time. That being said, I told my mom that maybe this support group thing is just what I need to do. I told her that I'm going to pray about it. I'll call the PHA, and ask for the starter kit packet, if only to just look at it right now. And then I can decide if I want to start a support group or not.
I almost think God might have already told me the answer.
Written by melonlady1724 . Link to this entry
This entry has 1 comments: (Add your own)
I was going to say... ask for the kit and decide from there... looks like you are ahead of me Comment from maidothemist - 5/19/05 10:53 PM
Comments