...
hello,
sorry i have not written in a few weeks. things have been going 'okay'. Alison and I went to Boston 08/25-08/27. We stayed with our good friends Mark and Pat-and their three awesome animals. 2 dogs, sydney and lexi and 1 cat, Mr. Jones. I loved being close to Mark and Pat, and it was so great to have animals around. On Saturday, I went to Judy's birthday party. I got to see Christopher and Alexander. It was a really great time to see them, but CHristopher made it difficulted and complicated. He is autistic, but he was in a rare form and over-excited. Alison and I were there longer than I had expected but it was a really nice night and I was really excited to see Judy and the boys. ON Sunday, Mark, Pat, Alison and I went food shopping and brought some bbq goods over to Judy's and had a bbq, played some games. Before we knew it, it was 7:15pm and Alison and I had to get on the road back to NJ. THe ride home was very scary. It was pouring in Connecticut and there was major flooding. We made it home slower than expected but we were okay, so that is all that mattered.
I've been busy with getting ready to do some school work and getting everything together. I've also been trying to deal with this $19,000 hospital bill that I have. I have just applied to Charity Care because everything else seems to have needed to be done prior to the transplant and being that Hackensack was under the impression that it was going to be 100% covered when I was in the hospital, we didn't do anything. SO, I will see the response I get. If not, I may have to do another fundraise or I may write letters to people who have supported me before to ask to help me out. I do have some of this money but not all of it. I was stressed about it, but I will deal with what I have to when the time comes.
I just do not want that to go into collections. SO I am trying to expedite the process. They first told me they could not see me until October 10th, 6 weeks, after speaking to someone. I had them send me the forms and sent everything in, and cancelled my appointment. That is too much time.
This past weekend, we stayed at home because the weather didn't look that great. We went to eat and Alison wanted to go shopping. We went to Woodbury Commons, but were not there for too long on Sunday because everyone decided that is where they should go. Then Sunday night, Alison's parents came to Hoboken for dinner and we went to Trinity, and it was really yummy and really nice outside. It was nice spending some time with them. We had not seen them in a while. Her sister also showed up to quickly say hi, because she was in Hoboken, and that is rare. Alison's sister, Michele is actually doing the triatholon in Westchester, NY on Sunday September 17, 2006. She is raising money for the Leukemia/Lymphoma society. It is amazing that she is doing a triatholon and more amazing that she is trying to raise money/awareness for Leukemia/Lymphoma. Alison's sister and i have not really had a chance to get to know each other. I do hope that changes. But regardless, I am happy to be going next Sunday to watch the event, even for a little while.
On Monday, I went to breakfast with Alison and after the breakfast, while still at the little cafe in Hoboken, I took my pills. Alison and I were walking to Kings supermarket because we had barely any food in our apt, and my hands started to get hives on them. I got panicky about this and we decided to go home instead. Alison thought I was just having anxiety but I was convinced something else was going on. I took an antianxiety medication but my legs started to get these hives on them. i was nervous about why this was happening and couldn't figure out what I had eaten that could possibly do this. Eventually the hives went away, and I had calmed down, and I took a shower. After the shower, I just put on my pjs, and was on my computer. All of a sudden, my feet started to itch. I looked down and all my toes, looked like they had been bitten by bugs, but this hadn't happened. I was nervous it GVHD or something was going on. So I called the doctor on call and when she called back, she said it could be GVHD or a viral infection. I thought I was allergic to something, but I asked if i Could take benadryll and she said "yes, even an atarax"-which is stronger, but I hate the way that makes me feel. So i took a benadryll and everything went away and i slept for quite a while.
So on Tuesday, the 5th, I went to see my dr. Dr. Rowley and as he is walking in, I am taking my shoes and socks off. And I said "you're probably wondering why i am doing this." and he just said "you're just getting comfy." and we laughed, but I told him what happened and he said "GVHD wouldn't go away like that, it sounds like you had an allergic reaction to something." ..My counts were all pretty good. My platelets are low, but they are higher and they are definitely at an okay level. My WBC was 6.7, my hemoglobin was 15.2.-my mom said "wow, that is like a man's hemoglobing, well i guess you are like a man" ha. i forgot about that -and my platelets were at 107,000.
So I had a good appt. He said 4 more weeks of prograf and as long as things stay good, I can get off of that.
So on Wednesday, I had an english muffin and some cream cheese and took my medications. Then i started to break out.
I was like "what do i do on Monday and wednesday?" and right away, I realized I take a medication called bactrim. I called up Hackensack and talked to my nurse practitioner and I said "Pam, is there anyway that all of a sudden, I can be allergic to Bactrim?" -and she said "absolutely"-I have been on this for 5 months now.
SO they prescribed a new medication to me that I will start-and hopefully we caught what was causing that.
So classes also started on Tuesday, mostly online. I have been reading a lot and keeping up with things. I also have this research practicum that I am doing with the chair of psychology. i actually have to get back to him.
SO all in all, things are going okay. With the exception of this massive bill, everything is alright right now.
Oh one thing, there is someone who got in touch with me, saying there is this 23 year old who needs a bone marrow transplant and no one matches her in the registry. IF YOU HAVEN'T REGISTERED< pLEASE DO SO. I will try to get more info.
I am really busy right now, but might try to get some kind of bone marrow drive together. I am waiting for more info on this girl. This woman contacted me because she liked one of my flyers.
Well I must go take my pills right now. Have a good day, a good weekend. I will try to write more.
Sincerely
Jenn
sorry i have not written in a few weeks. things have been going 'okay'. Alison and I went to Boston 08/25-08/27. We stayed with our good friends Mark and Pat-and their three awesome animals. 2 dogs, sydney and lexi and 1 cat, Mr. Jones. I loved being close to Mark and Pat, and it was so great to have animals around. On Saturday, I went to Judy's birthday party. I got to see Christopher and Alexander. It was a really great time to see them, but CHristopher made it difficulted and complicated. He is autistic, but he was in a rare form and over-excited. Alison and I were there longer than I had expected but it was a really nice night and I was really excited to see Judy and the boys. ON Sunday, Mark, Pat, Alison and I went food shopping and brought some bbq goods over to Judy's and had a bbq, played some games. Before we knew it, it was 7:15pm and Alison and I had to get on the road back to NJ. THe ride home was very scary. It was pouring in Connecticut and there was major flooding. We made it home slower than expected but we were okay, so that is all that mattered.
I've been busy with getting ready to do some school work and getting everything together. I've also been trying to deal with this $19,000 hospital bill that I have. I have just applied to Charity Care because everything else seems to have needed to be done prior to the transplant and being that Hackensack was under the impression that it was going to be 100% covered when I was in the hospital, we didn't do anything. SO, I will see the response I get. If not, I may have to do another fundraise or I may write letters to people who have supported me before to ask to help me out. I do have some of this money but not all of it. I was stressed about it, but I will deal with what I have to when the time comes.
I just do not want that to go into collections. SO I am trying to expedite the process. They first told me they could not see me until October 10th, 6 weeks, after speaking to someone. I had them send me the forms and sent everything in, and cancelled my appointment. That is too much time.
This past weekend, we stayed at home because the weather didn't look that great. We went to eat and Alison wanted to go shopping. We went to Woodbury Commons, but were not there for too long on Sunday because everyone decided that is where they should go. Then Sunday night, Alison's parents came to Hoboken for dinner and we went to Trinity, and it was really yummy and really nice outside. It was nice spending some time with them. We had not seen them in a while. Her sister also showed up to quickly say hi, because she was in Hoboken, and that is rare. Alison's sister, Michele is actually doing the triatholon in Westchester, NY on Sunday September 17, 2006. She is raising money for the Leukemia/Lymphoma society. It is amazing that she is doing a triatholon and more amazing that she is trying to raise money/awareness for Leukemia/Lymphoma. Alison's sister and i have not really had a chance to get to know each other. I do hope that changes. But regardless, I am happy to be going next Sunday to watch the event, even for a little while.
On Monday, I went to breakfast with Alison and after the breakfast, while still at the little cafe in Hoboken, I took my pills. Alison and I were walking to Kings supermarket because we had barely any food in our apt, and my hands started to get hives on them. I got panicky about this and we decided to go home instead. Alison thought I was just having anxiety but I was convinced something else was going on. I took an antianxiety medication but my legs started to get these hives on them. i was nervous about why this was happening and couldn't figure out what I had eaten that could possibly do this. Eventually the hives went away, and I had calmed down, and I took a shower. After the shower, I just put on my pjs, and was on my computer. All of a sudden, my feet started to itch. I looked down and all my toes, looked like they had been bitten by bugs, but this hadn't happened. I was nervous it GVHD or something was going on. So I called the doctor on call and when she called back, she said it could be GVHD or a viral infection. I thought I was allergic to something, but I asked if i Could take benadryll and she said "yes, even an atarax"-which is stronger, but I hate the way that makes me feel. So i took a benadryll and everything went away and i slept for quite a while.
So on Tuesday, the 5th, I went to see my dr. Dr. Rowley and as he is walking in, I am taking my shoes and socks off. And I said "you're probably wondering why i am doing this." and he just said "you're just getting comfy." and we laughed, but I told him what happened and he said "GVHD wouldn't go away like that, it sounds like you had an allergic reaction to something." ..My counts were all pretty good. My platelets are low, but they are higher and they are definitely at an okay level. My WBC was 6.7, my hemoglobin was 15.2.-my mom said "wow, that is like a man's hemoglobing, well i guess you are like a man" ha. i forgot about that -and my platelets were at 107,000.
So I had a good appt. He said 4 more weeks of prograf and as long as things stay good, I can get off of that.
So on Wednesday, I had an english muffin and some cream cheese and took my medications. Then i started to break out.
I was like "what do i do on Monday and wednesday?" and right away, I realized I take a medication called bactrim. I called up Hackensack and talked to my nurse practitioner and I said "Pam, is there anyway that all of a sudden, I can be allergic to Bactrim?" -and she said "absolutely"-I have been on this for 5 months now.
SO they prescribed a new medication to me that I will start-and hopefully we caught what was causing that.
So classes also started on Tuesday, mostly online. I have been reading a lot and keeping up with things. I also have this research practicum that I am doing with the chair of psychology. i actually have to get back to him.
SO all in all, things are going okay. With the exception of this massive bill, everything is alright right now.
Oh one thing, there is someone who got in touch with me, saying there is this 23 year old who needs a bone marrow transplant and no one matches her in the registry. IF YOU HAVEN'T REGISTERED< pLEASE DO SO. I will try to get more info.
I am really busy right now, but might try to get some kind of bone marrow drive together. I am waiting for more info on this girl. This woman contacted me because she liked one of my flyers.
Well I must go take my pills right now. Have a good day, a good weekend. I will try to write more.
Sincerely
Jenn
posted by Jenn at 10:49 AM
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