Today (after the sleep clinic) i did a bunch of flip videos. Our dear friends Ana and Isa are in the process of creating a documentary film about international issues, cystic fibrosis, and transplantation. My mom and I have been asked to contribute some tape of us talking about our experience with transplant and CF. It is very hard to talk to the camera. I always said how I would never do reality TV, but i guess this is different. This isn't reality TV, this is truly reality. I talked about how difficult my life is, what i do in a day, what it means to be on the transplant list, and how important my sister is to me. Along with some other random ramblings...
I am having this karmic experience where i am going through the transplant process right at the time when a documentary is being made, and letting go of my own insecurities for the betterment of others is what i have to do. I have to let myself be vulnerable. I have to let myself be seen as "sick". this has always been such a big fear of mine. I never want people to view me as sick, as unable to accomplish something, as less than. But here i am. Barely able to keep up. I must be honest at this point, life is hard. I am the epitome of vulnerable. I must share it, and help others learn about it. To see why we need organ donors. Because without the knowledge and education we don't have donors, and we need people to consider the possibility of donation. If i can share my story and it will help others, it makes my participation and insecurities worth it.
Thursday, August 12, 2010
Wednesday, August 11, 2010
A day at the sleep clinic
Today two gimps set out on a date. One with a crutch and the other with an oxygen tank and sleeping machine attached to a cart. clip clop, wobble, wobble, wugga wugga, woooosh. The sounds of the invalids.
We got to the appointment just fine, hobbled and rolled our way up to the sleep center. The doc greeted us after we checked in and we said, "don't mind us, we are both gimps" and he said, it's ok, i am too! He mentioned he had been in some crazy explosion accident, he didn't go into it but said he was lucky to be alive. Anyways, he was a really great doctor and really understanding to all of my variety of issues in addition to my sleep apnea. He downloaded my data from my SD card in my bipap machine. He said that everything looked perfect! I was leaking less air than was allowed by regular use, and that I had no apneas or hypopneas at all. They want the index to be no more than 5.0 and my index score was 0.3. He called me a miracle child! haha! I finally had a good appointment, and the treatment is working! He told me to just keep doing what i am doing and that after transplant i will come back to do another sleep study to see if i can switch to the Cpap, and not use O2 with the machine. YAY. One thing i don't have to worry about anymore!!! Hallelujah.
We got to the appointment just fine, hobbled and rolled our way up to the sleep center. The doc greeted us after we checked in and we said, "don't mind us, we are both gimps" and he said, it's ok, i am too! He mentioned he had been in some crazy explosion accident, he didn't go into it but said he was lucky to be alive. Anyways, he was a really great doctor and really understanding to all of my variety of issues in addition to my sleep apnea. He downloaded my data from my SD card in my bipap machine. He said that everything looked perfect! I was leaking less air than was allowed by regular use, and that I had no apneas or hypopneas at all. They want the index to be no more than 5.0 and my index score was 0.3. He called me a miracle child! haha! I finally had a good appointment, and the treatment is working! He told me to just keep doing what i am doing and that after transplant i will come back to do another sleep study to see if i can switch to the Cpap, and not use O2 with the machine. YAY. One thing i don't have to worry about anymore!!! Hallelujah.
Tuesday, August 10, 2010
Happy Birthday Casey!
Today is the love of my life's birthday! He is 28 today. We celebrated with a nice man sized brunch. I made him hot linguisa, 3 fried eggs, some cheese, honey dew melon, donuts, and beer. What more could he ask for? We watched So you think you can dance... that we missed last week from being at Retreat. It was a really nice day. He has been getting calls from his friends and family all day. I think he is feelin the love. He should. He is the most amazing man. He has been so supportive in this time of need in our life. We are working together and still having fun. I love him so much and am so thankful to have him in my life. Next year we will be able to party a bit harder and maybe go on a birthday adventure with great new lungs! Thank you Casey for being You and Thank you for being Born. I love you with all my heart!
Monday, August 9, 2010
My Wonderful Week at CF Retreat!
Ahhhh.... the week I anticipate all year is over. I am overwhelmed by a sense of camaraderie, exhaustion, joy, hope, and a great will to live. My life has been blessed to get to know so many amazing people with CF, and also "normies". This year our group was lucky enough to welcome about 10 new comers. We had 5 new CFers, all MEN! For the first time the females were outnumbered! We had so many people with CF this year. Often we are about even with how many non-CFers we have, who we need to help with our cross-infection guidelines and strategies to keep us all safe and germ free. But this year Monica and Jessica worked their buns off as there really were not as many as we have had in the past. Not everyone was there for the entire week, but we had great attendance this year. It gave me a lot of hope that this group will continue for years to come! The other amazing thing about our group was at one point we had 9 people with transplants... next year I will make it 10!!!!!
It was a strange experience for me to meet all these new people at this stage in my life, as i am not quite as spunky or energetic than i once was. I drag around Oxygen, and i cough a lot more and spend more time doing treatments. However, I am proud that I participated, had a good attitude, and enjoyed myself. It was so nice to escape the mundane-ness of my life on the list. It was the only safe place i could go to spend a nice week long vacation.
We had great rap sessions, arts and crafts, stress management, yoga, volleyball, wiffle ball, improv, and a wonderful one man show. We were honored to welcome Jordan Herskowitz to perform his one man show Jordy Pordy, which he performs to raise awareness for organ donation and cystic fibrosis. It was absolutely an amazing show. It was very close to my heart and my sister's heart as we are struggling through the same experiences that he has been through in his life. Lets just say there wasn't a dry eye in the audience by the end, and Sara and I made a ridiculous scene of the real authentic Ugly Cry. It was good for us to process and experience this together. We were both thankful that during the show we did not end up sitting next to each other because we would have been a blubbering mess!!! His show was not just touching, but also hilarious. He really combined the comedy and drama perfectly.
For some of the activities I had to sit out, to rest and nap and treatment instead. But i felt completely included and loved and that I made a great contribution to the community. I just wanted to make sure that everyone knows how important each person at retreat is to me. They all teach me lessons about life, and to be happy to be alive, and give me the will to get to next year!
It was a strange experience for me to meet all these new people at this stage in my life, as i am not quite as spunky or energetic than i once was. I drag around Oxygen, and i cough a lot more and spend more time doing treatments. However, I am proud that I participated, had a good attitude, and enjoyed myself. It was so nice to escape the mundane-ness of my life on the list. It was the only safe place i could go to spend a nice week long vacation.
We had great rap sessions, arts and crafts, stress management, yoga, volleyball, wiffle ball, improv, and a wonderful one man show. We were honored to welcome Jordan Herskowitz to perform his one man show Jordy Pordy, which he performs to raise awareness for organ donation and cystic fibrosis. It was absolutely an amazing show. It was very close to my heart and my sister's heart as we are struggling through the same experiences that he has been through in his life. Lets just say there wasn't a dry eye in the audience by the end, and Sara and I made a ridiculous scene of the real authentic Ugly Cry. It was good for us to process and experience this together. We were both thankful that during the show we did not end up sitting next to each other because we would have been a blubbering mess!!! His show was not just touching, but also hilarious. He really combined the comedy and drama perfectly.
For some of the activities I had to sit out, to rest and nap and treatment instead. But i felt completely included and loved and that I made a great contribution to the community. I just wanted to make sure that everyone knows how important each person at retreat is to me. They all teach me lessons about life, and to be happy to be alive, and give me the will to get to next year!
Wednesday, August 4, 2010
Miss Priss
Well, I am the princess from the princess and the pea. I can't sleep anywhere except for home. I thought that maybe this year would be different as I finally got my sleep apnea treated, but no way jose. I think it is even worse this year. I had the least restful sleep of my life. If this doesn't change tomorrow, i might have to head home to sleep. I just CAN'T run myself ragged. Maybe if i get tired enough then i will be able to sleep. Hopefully a nap? I think part of the problem is that the only way i get to bed is through a ritual, and there is no going to the kitchen, having a snack, watching tv, then heading to bed. It is amazing how addicted I am to routine.
Also, every time i sleep away from home i curse the day we got a tempurpedic bed. I can't sleep on regular beds now. They squeak, my blood circulation gets cut off in my arm, and i just toss and turn. Obviously it is good that we have this amazing bed at home and i sleep wonderfully on it, but honestly I am ruined! Oh poor baby, I know. I just can't help it. I have tried so hard not to be a prissy sissy, but it just doesn't work, i continue to be high maintenance.
It is funny being in this room because it is the most BARE room, no luxuries what so ever -- not even blankets. And you have to make your own bed, luckily i had one of my slaves do that for me ;) hehe... We do have wifi. I don't even have enough space to put all my medical crap. We need an extra table. I am definitely the village pharmacy over here. I think i am going to TRY to get a little more sleep now. My eyes are getting tired looking at the screen. I gotta get in a better routine here so i can get some rest. Part of the problem is that it is too much fun here and there is always something fun to do... who wants to sleep when your best friends are around? I sure don't ;)
Also, every time i sleep away from home i curse the day we got a tempurpedic bed. I can't sleep on regular beds now. They squeak, my blood circulation gets cut off in my arm, and i just toss and turn. Obviously it is good that we have this amazing bed at home and i sleep wonderfully on it, but honestly I am ruined! Oh poor baby, I know. I just can't help it. I have tried so hard not to be a prissy sissy, but it just doesn't work, i continue to be high maintenance.
It is funny being in this room because it is the most BARE room, no luxuries what so ever -- not even blankets. And you have to make your own bed, luckily i had one of my slaves do that for me ;) hehe... We do have wifi. I don't even have enough space to put all my medical crap. We need an extra table. I am definitely the village pharmacy over here. I think i am going to TRY to get a little more sleep now. My eyes are getting tired looking at the screen. I gotta get in a better routine here so i can get some rest. Part of the problem is that it is too much fun here and there is always something fun to do... who wants to sleep when your best friends are around? I sure don't ;)
Tuesday, August 3, 2010
One WEEK and time for Retreat!
I got on the transplant list One week today. It took until now for it to really settle in and for me to realize, Ok, i can do this waiting thing. I am really ready to buckle down and ride the ride. I don't have to be on HIGH alert. I just have to make sure that I am available at all times by phone. I guess my lungs are always on call ;) Other than that I need to just simply relax, live my life, and let the mojo flow.
And therefore I am going to live my life with the most amazing people... My CF buddies!
Off to the CFRI teen and adult Retreat today!!!! YAY!!!!! Except it is bitter sweet because two of my good friends are not able to be there this year because of their sputum culture results. We screen everyone to make sure no one has any type of bug in their lung that is shown to be "more serious" So because one of those bugs showed up in two of my friends cultures, they can't join us this year. I am giving them a shout out right here... HEYYYYY! I love you!
I am not sure how I am going to survive this retreat energy wise, but i have a great support network, and my wonderful Linda has offered to help me in any way she can. Also, there is always my wonderful Casey. So they will be my slaves ;) My mom gets to be my slave one more day this week, then she gets some time off from being a slave. I am a nice slave driver though, i let them eat yummy food and take naps, and even exercise if they want. So don't feel too bad for my slaves ;) Also, spending time with ME has got to be fun right? hehe...
I am due for a battery recharge with my friends. I hope this week completely fills my CF love tank!
And therefore I am going to live my life with the most amazing people... My CF buddies!
Off to the CFRI teen and adult Retreat today!!!! YAY!!!!! Except it is bitter sweet because two of my good friends are not able to be there this year because of their sputum culture results. We screen everyone to make sure no one has any type of bug in their lung that is shown to be "more serious" So because one of those bugs showed up in two of my friends cultures, they can't join us this year. I am giving them a shout out right here... HEYYYYY! I love you!
I am not sure how I am going to survive this retreat energy wise, but i have a great support network, and my wonderful Linda has offered to help me in any way she can. Also, there is always my wonderful Casey. So they will be my slaves ;) My mom gets to be my slave one more day this week, then she gets some time off from being a slave. I am a nice slave driver though, i let them eat yummy food and take naps, and even exercise if they want. So don't feel too bad for my slaves ;) Also, spending time with ME has got to be fun right? hehe...
I am due for a battery recharge with my friends. I hope this week completely fills my CF love tank!
Monday, August 2, 2010
My weekend
I spent some time by myself this weekend. As much as I love all of my wonderful caregivers it is nice to have personal moments. I was able to nap, paint, go for a walk, and lay by the pool. I was inspired to paint a picture of my new lungs... I think of it like a vision board... Paint what you want to happen. Let it be so...
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