If you can spare some change - it looks like the citizens in the Deep South will need all the help they can get...
Salvation Army
Tuesday, August 30, 2005
Monday, August 29, 2005
9.5 last week
So I'm in my 4th week of work and 3 weeks post transfusion. My last count (8/24) was a 9.5. I didn't get called the prior two weeks so I have no idea what the 9.5 represents - stayed same, dropped alot...no idea. I wish they'd call me every week - but I know my nurse is super busy.
What I really wish is that my hospital would have a patient internet portal where I could log in and get my results. It would be so much easier...then they could flag if I needed to call the doctor. Anyway - being the data geek that I am - I would love to download my lab results and create pretty excel spreadsheets...
I need a hobby.
The other thing that is sort of DBA related is the weight gain from Prednisone. Now admittedly, I have not done the best at restricting my intake but the whole "STARVING" thing has hit me. So as of today - I'm on a quest to lose this weight. I've decided to do Slim-Fast for breakfast & lunch for two weeks. My god, does it SUCK! It's 12:24 - I've had my slim-fast and some fruit for lunch and I'm so hungry....I know it will get easier...but still. To make things worse - my office is getting new furniture and I'm typing this from our cafeteria. I'm about to gnaw off my arm. But my blood count gets better when my weight goes down so I know I have to do this. After the two weeks - I'm going to Slim-Fast for breakfast and slowly introduce healthy lunches back into my day...I'm hoping by then I will be able to make better choices.
Ergh...blood test this wednesday...I'll keep you posted.
Diamond Blackfan Anemia
Prednisone
What I really wish is that my hospital would have a patient internet portal where I could log in and get my results. It would be so much easier...then they could flag if I needed to call the doctor. Anyway - being the data geek that I am - I would love to download my lab results and create pretty excel spreadsheets...
I need a hobby.
The other thing that is sort of DBA related is the weight gain from Prednisone. Now admittedly, I have not done the best at restricting my intake but the whole "STARVING" thing has hit me. So as of today - I'm on a quest to lose this weight. I've decided to do Slim-Fast for breakfast & lunch for two weeks. My god, does it SUCK! It's 12:24 - I've had my slim-fast and some fruit for lunch and I'm so hungry....I know it will get easier...but still. To make things worse - my office is getting new furniture and I'm typing this from our cafeteria. I'm about to gnaw off my arm. But my blood count gets better when my weight goes down so I know I have to do this. After the two weeks - I'm going to Slim-Fast for breakfast and slowly introduce healthy lunches back into my day...I'm hoping by then I will be able to make better choices.
Ergh...blood test this wednesday...I'll keep you posted.
Diamond Blackfan Anemia
Prednisone
Friday, August 12, 2005
How to get a new job with DBA
I just started a new job this week. I was kind of nervous because it was the first job I had looked for after coming out of remission with DBA.
I know based on the Americans with Disabilities Act that you cannot be discriminated against for having a chronic disease and I'm the type that doesn't like to spring things on people. But at the same time I needed a job.
So I went through the interview process and, during the phone call where I was offered the job, I said "Oh by the way, I have this disease and I need to work out with you times for me to get treatment". I was told that there would be no problem.
My new manager said that this was the perfect way to handle it. So if any of you DBAers are looking for a new job and don't know when to tell your new employer - this way worked for me.
DBA
Diamond Blackfan Anemia
New Job
DBA
I know based on the Americans with Disabilities Act that you cannot be discriminated against for having a chronic disease and I'm the type that doesn't like to spring things on people. But at the same time I needed a job.
So I went through the interview process and, during the phone call where I was offered the job, I said "Oh by the way, I have this disease and I need to work out with you times for me to get treatment". I was told that there would be no problem.
My new manager said that this was the perfect way to handle it. So if any of you DBAers are looking for a new job and don't know when to tell your new employer - this way worked for me.
DBA
Diamond Blackfan Anemia
New Job
DBA
Sunday, August 07, 2005
If it's Friday, it must be a transfusion
Yep, I got filled up this past Friday. I had my counts done on Wednesday and I was an 8.3. Not low enough that I get a transfusion but I had been having the major symptoms (chest pain, shortness of breath, extremity pain, lightheadedness, etc...). So I talked my doctor into it.
I'm also starting a brand new job tomorrow and I didn't want to have to take a sick day on my first week...that would suck. So now I can go in tomorrow ready to tackle this new job. Funny enough, I'm going to work in a hospital. (IT related) You would think I was done with hospitals by now.
Transfusion went fine other than a minor inconvenience of my blood not being ready. It's usually matched and ready to go when I get there at 8am...but the orders weren't written correctly and they didn't start matching the blood until that morning. So I went home and returned to the hospital at 10am. Luckily it wasn't busy so I got my usual chair by the windows that has lots of room around it. We bought a portable DVD player earlier this year - so I watched movies all day and started reading "The DaVinci Code" (great book).
My favorite nurse is getting married in October and will be leaving the hospital in September to move to Northern California (WAAAAAAA!)... I need to find a new nurse...
The prednisone is wreaking havoc with my legs again. For the last week - my lower legs have been numb and tingly...starting today - they hurt. I have to get back to the gym and work it out. I've also gained 5lbs...have to get on top of that as well. It's all in my neck too! I feel like I have a teeny tiny face on this huge blob of a neck. ICK!
I'm also starting a brand new job tomorrow and I didn't want to have to take a sick day on my first week...that would suck. So now I can go in tomorrow ready to tackle this new job. Funny enough, I'm going to work in a hospital. (IT related) You would think I was done with hospitals by now.
Transfusion went fine other than a minor inconvenience of my blood not being ready. It's usually matched and ready to go when I get there at 8am...but the orders weren't written correctly and they didn't start matching the blood until that morning. So I went home and returned to the hospital at 10am. Luckily it wasn't busy so I got my usual chair by the windows that has lots of room around it. We bought a portable DVD player earlier this year - so I watched movies all day and started reading "The DaVinci Code" (great book).
My favorite nurse is getting married in October and will be leaving the hospital in September to move to Northern California (WAAAAAAA!)... I need to find a new nurse...
The prednisone is wreaking havoc with my legs again. For the last week - my lower legs have been numb and tingly...starting today - they hurt. I have to get back to the gym and work it out. I've also gained 5lbs...have to get on top of that as well. It's all in my neck too! I feel like I have a teeny tiny face on this huge blob of a neck. ICK!
Tuesday, August 02, 2005
A month later and lots happening...
Well, since my last happy-dandy post where my count had blasted up to a 10.0 - it's been steadily falling in the 8s. Last week I was at an 8.1 and I should have insisted on a transfusion. I guess I'm just way too optimistic that it will jump back up.
I have felt just TERRIBLE the last few days. Typical headache, chest pain, extremity pain. I called my doctor's nurse today and had her send in the paperwork for a type and cross to accompany my CBC+Retic tomorrow. I do that so I don't have to get stuck three days in a row (CBC on weds, T&C on Thurs, Xfusion on Friday). I'm hoping my count is the same or down because I REALLY want a transfusion...I just don't feel good.
On top of this, I'm having lower leg pain from the Prednisone (still on it at 40mg/day). It feels like there are rubber bands around my lower legs - just below my calves. Totally bizarre. Because of that - I have to go to the gym every day to make sure my muscles get exercised and don't disappear completely.
Luckily I like the gym. Especially since my leg exercises have resulted in the beginnings of a J-lo'esque back end.
I start a new job next week. When my new boss offered me the job - I told her about the DBA. I was pretty nervous because, since I came out of remission in 1999, I had only worked for people that knew me and about my condition. I think she was a little surprised but then told me that whatever accomodations I needed, we would work out. Hurrah! It's probably a good thing that I'll be working in a hospital. (IT related). The SUCK thing is that I'm not eligible for any benefits until December because they have a 3-month probation thing. So we are stuck paying 935.49/month for three extra months. This does not make my bank account happy.
The new job is another reason why I want a transfusion....it would be nice to go into a new job not feeling like total crap. It has been 4 months since my last xfusion - hooray for that!
Will try to post more often...until later then!
I have felt just TERRIBLE the last few days. Typical headache, chest pain, extremity pain. I called my doctor's nurse today and had her send in the paperwork for a type and cross to accompany my CBC+Retic tomorrow. I do that so I don't have to get stuck three days in a row (CBC on weds, T&C on Thurs, Xfusion on Friday). I'm hoping my count is the same or down because I REALLY want a transfusion...I just don't feel good.
On top of this, I'm having lower leg pain from the Prednisone (still on it at 40mg/day). It feels like there are rubber bands around my lower legs - just below my calves. Totally bizarre. Because of that - I have to go to the gym every day to make sure my muscles get exercised and don't disappear completely.
Luckily I like the gym. Especially since my leg exercises have resulted in the beginnings of a J-lo'esque back end.
I start a new job next week. When my new boss offered me the job - I told her about the DBA. I was pretty nervous because, since I came out of remission in 1999, I had only worked for people that knew me and about my condition. I think she was a little surprised but then told me that whatever accomodations I needed, we would work out. Hurrah! It's probably a good thing that I'll be working in a hospital. (IT related). The SUCK thing is that I'm not eligible for any benefits until December because they have a 3-month probation thing. So we are stuck paying 935.49/month for three extra months. This does not make my bank account happy.
The new job is another reason why I want a transfusion....it would be nice to go into a new job not feeling like total crap. It has been 4 months since my last xfusion - hooray for that!
Will try to post more often...until later then!
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