It was such a beautiful weekend. I wish I would of taken pictures to post because most people would of laughed it they saw what Brian and I did yesterday. It was around 50 out and we figured we should soak up some vitamin D so we sat in the driveway (the only place in our yard without snow) for 4 hours. We had a couple friends stop by to join us for a few hours. The guys hung out and drank some beer while I pigged out on candy! The sun felt so great! I made the mistake of staying in the sun too long and got rosy red cheeks. Oh the joys of sun sensitive medication.
The weather looks nice for the entire week so maybe I will get off my butt and go for a walk. Hopefully, we have seen the last snow storm of the winter! Now we get to look forward to mud season. Can any one tell me why I still live in Maine?
Funny thought of the week:
As I write this I am listening to the news. What do I hear? A wild turkey knocks a man of his motorcycle. Can you imagine?
Monday, March 16, 2009
Wednesday, March 11, 2009
Appointment
I had a great appointment at my transplant clinic. First, I stepped on the scale this morning and I weighed 116! When I stepped on the scale at the clinic same result. My oxygen was 93 at fist and then quickly went to 98 at room air. Of course my heart rate was so high it would scare most people but not me 135...that's what I get walking 50 feet without oxygen on. Off to do lung my lung function test. My FEV1s was 1.24...41% of my predicted. Yeah!!!
Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!
After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.
Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!
Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!
After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.
Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!
Yeah...I know
It has been a while since I blogged. Life just got really hectic. I figured I would do a quick update while I did my vest.
-Today, I go to Boston for a transplant appointment
-Last week, I spent in a court house supporting my sister, Melissa as she was fighting to change primary residency of her 2 daughters which was with their father. It was two very long days but well worth it since she won!!! She will have primary residency at the beginning on next school year.
-A few weeks ago, Brian and I spent the night in Portland for a romantic get away. Anyone who knows my husband knows that this is basically impossible since he is such a comedian. We spent the entire night laughing but had a fantastic time.
-I have made it through the winter with out having a major flare up...knocking on wood! I was down and out on Monday but woke up refreshed on Tuesday. I'll take that any day than 2 plus weeks on IVs.
-We have had a snow storm every Monday for the past 3 weeks. I cannot wait for spring.
-Life is treating me pretty good right now.
- New Breath 4 Steph did a fundraiser with Pampered Chef. It raised $162 plus more to come from the consultant.
I have definitely not been bored in the past month. I was actually MIA for a while. I will write more when I have time.
Here is a saying I just came across that I fell in love with : Life should not be measured by the amount of breaths you take but by the amount of moments that leaves you breathless.
-Today, I go to Boston for a transplant appointment
-Last week, I spent in a court house supporting my sister, Melissa as she was fighting to change primary residency of her 2 daughters which was with their father. It was two very long days but well worth it since she won!!! She will have primary residency at the beginning on next school year.
-A few weeks ago, Brian and I spent the night in Portland for a romantic get away. Anyone who knows my husband knows that this is basically impossible since he is such a comedian. We spent the entire night laughing but had a fantastic time.
-I have made it through the winter with out having a major flare up...knocking on wood! I was down and out on Monday but woke up refreshed on Tuesday. I'll take that any day than 2 plus weeks on IVs.
-We have had a snow storm every Monday for the past 3 weeks. I cannot wait for spring.
-Life is treating me pretty good right now.
- New Breath 4 Steph did a fundraiser with Pampered Chef. It raised $162 plus more to come from the consultant.
I have definitely not been bored in the past month. I was actually MIA for a while. I will write more when I have time.
Here is a saying I just came across that I fell in love with : Life should not be measured by the amount of breaths you take but by the amount of moments that leaves you breathless.
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