I've been in the land of OH-IO for the past several days sans Internet connection. Here are a few quick updates for my loyal readers.
1) My hair is still falling out at an alarming rate. But, no visible bald patches yet. I'm strongly considering a major haircut, something more flattering to my now very thin hair.
2) October 1 came and went and my husband is still employed. He did not get the legislative fix necessary to keep his organization operating into the bailout legislation. (Yay! Let's give $700B to Wall Street but not continue to allow these charities to help 100,000 people a year buy homes without using any taxpayer money.) But, his organization is very financially sound right now so they are going to keep their employees on for as long as possible hoping that the legislative fix will indeed happen before the have to close down. So, sigh of relief, for now things are fine.
3) Another sigh of relief, my platelets have remained stable in the 65K range for about 6 weeks now. In fact, I no longer have to go in for my weekly blood draw but am just going every few weeks. 65K is still low but well above the critically low range I was in before. So, woo hoo for my platelets!
Coming attractions this week include a rant about people who choose not to vote--especially when said people live in the battleground state of Ohio; the story of Lucas and his new Hummer (I kid you not); and a long visit to Ohio which included my brother-in-law, sister-in-law and niece (obviously I don't blame her) finding exactly 2.5 hours to spend with their nephew and brother.
Showing posts with label Platelets. Show all posts
Showing posts with label Platelets. Show all posts
Tuesday, October 7, 2008
Wednesday, July 30, 2008
Prednisone Out!
And in other news...today was my very last day on prednisone!
After 12 weeks and 1 day, I am finally done!
Don't let that good news fool you, though. My platelets are still haywire. After reaching "normal" levels during my week at the beach, they were back down to just-above-critical one week later. Yeah, and I totally asked for a "prescription" to go back to the beach for the rest of the summer. Apparently rest and relaxation (or conversely stress) have no impact on platelet levels. Nor does Vitamin D (I asked all of these questions!).
But, let's focus on the good news: I could officially compete in the Olympics if I wanted to as I am steroid-free! (Yeah, like that was the only thing keeping me from Olympic-level competition. Ha!)
After 12 weeks and 1 day, I am finally done!
Don't let that good news fool you, though. My platelets are still haywire. After reaching "normal" levels during my week at the beach, they were back down to just-above-critical one week later. Yeah, and I totally asked for a "prescription" to go back to the beach for the rest of the summer. Apparently rest and relaxation (or conversely stress) have no impact on platelet levels. Nor does Vitamin D (I asked all of these questions!).
But, let's focus on the good news: I could officially compete in the Olympics if I wanted to as I am steroid-free! (Yeah, like that was the only thing keeping me from Olympic-level competition. Ha!)
Monday, July 21, 2008
I'm Back!
Why hello there! I'm back.
"What?" You ask.
"I didn't even know you were gone." You say.
Indeed. I set a few posts on auto-post and left for the beach last Sunday. And, actually, I was "out of pocket" as far as the blog was concerned starting last Friday morning, as I was consumed with wonderful and fun wedding preparations.
On Friday I got to visit with our good friends Amy and Ryan as well as the beautiful bride-to-be. My radish salad got mixed reviews for lunch (don't worry, it wasn't the only thing I served!). Then the girls were off for manis and pedis. I opted for a soft pink while the bride went with bright red! It was a little shocking but definitely suited her.
Later that evening was the rehearsal and rehearsal dinner--both were lovely. Except, that is, for the fact that I was freezing during the dinner while every other guest complained about being hot.
Yes, my friends, I was running a fever!
Apparently I had side-effects from the vaccine a my doctor gave me on Thursday. The very vaccine I questioned, telling my doctor that I was in a wedding on Saturday and leaving for the beach on Sunday, and that I wanted to be sure I wouldn't have any side effects from. Oh, those are so rare, he assured me.
Yeah, rare.
Luckily my fever broke sometime around 9 or 10am on Saturday--I woke up literally drenched. I made my way into the shower and somehow was able to get my stuff together to meet the bride at the hair salon at 1pm. From then on it was a whirlwind and honestly I felt better and stronger with each passing hour. After getting my hair done I was treated to getting my make-up done by the bride's cousin. She did a great job, except my eyebrows which I thought were unnaturally dark.
The wedding was beautiful. It was so perfect. Simple and lovely. And the reception was a lot of fun.
Then, Sunday morning we woke up threw some stuff in the car and were off to the beach. It was the most wonderful 7-hour drive ever. Why? Well, because our darling toddler left for the beach Saturday morning with my parents. They were so excited to have him at the beach for an entire day without us; I knew we were getting the better end of the deal--a toddler-free car trip!
As for the week at the beach: it was glorious.
Here was my plan for the week (which I was pretty much able to follow every day!):
"What?" You ask.
"I didn't even know you were gone." You say.
Indeed. I set a few posts on auto-post and left for the beach last Sunday. And, actually, I was "out of pocket" as far as the blog was concerned starting last Friday morning, as I was consumed with wonderful and fun wedding preparations.
On Friday I got to visit with our good friends Amy and Ryan as well as the beautiful bride-to-be. My radish salad got mixed reviews for lunch (don't worry, it wasn't the only thing I served!). Then the girls were off for manis and pedis. I opted for a soft pink while the bride went with bright red! It was a little shocking but definitely suited her.
Later that evening was the rehearsal and rehearsal dinner--both were lovely. Except, that is, for the fact that I was freezing during the dinner while every other guest complained about being hot.
Yes, my friends, I was running a fever!
Apparently I had side-effects from the vaccine a my doctor gave me on Thursday. The very vaccine I questioned, telling my doctor that I was in a wedding on Saturday and leaving for the beach on Sunday, and that I wanted to be sure I wouldn't have any side effects from. Oh, those are so rare, he assured me.
Yeah, rare.
Luckily my fever broke sometime around 9 or 10am on Saturday--I woke up literally drenched. I made my way into the shower and somehow was able to get my stuff together to meet the bride at the hair salon at 1pm. From then on it was a whirlwind and honestly I felt better and stronger with each passing hour. After getting my hair done I was treated to getting my make-up done by the bride's cousin. She did a great job, except my eyebrows which I thought were unnaturally dark.
The wedding was beautiful. It was so perfect. Simple and lovely. And the reception was a lot of fun.
Then, Sunday morning we woke up threw some stuff in the car and were off to the beach. It was the most wonderful 7-hour drive ever. Why? Well, because our darling toddler left for the beach Saturday morning with my parents. They were so excited to have him at the beach for an entire day without us; I knew we were getting the better end of the deal--a toddler-free car trip!
As for the week at the beach: it was glorious.
Here was my plan for the week (which I was pretty much able to follow every day!):
- 7am wake-up (unfortunately Lucas had other plans which included waking up at 6am every day, oh well!)
- 8am hit the beach
- 11am back to the house for lunch and naps (both Lucas and me!)
- 3pm - 5pm return to the beach
- 6pm dinner (pre-assigned to a different family each night)
- 8pm Lucas to bed
- 8pm - ? Hang out, games, etc.
And the best news of the week? I made a visit to the local hospital for a blood draw on Wednesday afternoon and my platelets came back normal.
NORMAL!
That is an increase of more than 100,000 in a week.
Doc, how about writing me a prescription for the beach for the rest of the summer?
Tuesday, May 27, 2008
Brief medical update
Sorry for the lack of posting lately. I do have a new post up at DC Metro Moms about my wonderful, wonderful town. I know many of you are interested in my health and so wanted to give a brief and hopefully not too boring update....
I tried desperately to get my very cool platelet count bar graph in here but can't get it to upload as an image. So here's the poor man's version in text.
Basically a normal person (e.g. you) has a platelet count of 150,000-300,000.
On May 6 my platelet count was less than 4,000 (I believe that is the lowest possible count.) This is freak-out mode; risk of spontaneous bleeding in the brain, etc.
In the hospital on May 8 my count had gotten up to 67,000. Woo hoo! Okay to proceed with surgery for the lymphectomy and bone marrow biopsy.
On May 15 completely pumped up on steroids and other meds: 147,000.
Last Thursday, May 22, for my weekly check-up I was down to 57,000. So disheartening. This means the steroids aren't doing their job. I'm 'roid ragin' for nothing.
So, Friday I went in for the first of four infusions of this medicine called rituximab.
This morning: 72,000. Okay. Up is good.
Friday I'll have my next blood tests and another round of rituximab. I'm really keeping my fingers crossed they will also decrease my dose of steriods. Otherwise I'm going to look into bodybuilding as my new career pursuit.
I tried desperately to get my very cool platelet count bar graph in here but can't get it to upload as an image. So here's the poor man's version in text.
Basically a normal person (e.g. you) has a platelet count of 150,000-300,000.
On May 6 my platelet count was less than 4,000 (I believe that is the lowest possible count.) This is freak-out mode; risk of spontaneous bleeding in the brain, etc.
In the hospital on May 8 my count had gotten up to 67,000. Woo hoo! Okay to proceed with surgery for the lymphectomy and bone marrow biopsy.
On May 15 completely pumped up on steroids and other meds: 147,000.
Last Thursday, May 22, for my weekly check-up I was down to 57,000. So disheartening. This means the steroids aren't doing their job. I'm 'roid ragin' for nothing.
So, Friday I went in for the first of four infusions of this medicine called rituximab.
This morning: 72,000. Okay. Up is good.
Friday I'll have my next blood tests and another round of rituximab. I'm really keeping my fingers crossed they will also decrease my dose of steriods. Otherwise I'm going to look into bodybuilding as my new career pursuit.
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