In my ongoing quest to get a new diagnosis, last month I had a lumbar puncture. The good news: the procedure and the recovery were incredibly less painful than the one I had in Dec. The bad news: my Cerebral Spinal Fluid is normal. The opening pressure was ten, and all the tests they performed on the fluid were negative. Now lest you think I wanted an illness which can only be diagnosed via CSF, I was hoping they would find something for which I could receive an effective treatment. I have been sick for 6 years now, and my disease has not responded to any of the drugs nor treatments that I've tried.
This new neurologist, who specializes in headache disorders, has reached the same conclusion as all the other physicians: intractable migraine disease. He wants me to revisit some of the drugs I took years ago, thinking they might be more effective now. I am willing to try almost anything, but I disliked some of the side effects; they made me feel worse, actually. I'll discuss it with him at my next appointment.
Meanwhile, I appreciate all the support I have received from you all, my readers. Thank you for your kind thoughts and messages.
Tuesday, March 10, 2009
Thursday, February 26, 2009
My New Infatuation with Coffee Stamps
It all began a few days ago when I spied this card: http://http://www.splitcoaststampers.com/gallery/photo/1242886.
This was a sneak peek of the new release from Elzybells, which debuted on Monday. The stamp on the above card is from the set 'Tea for Two.'
After emailing the creator, I began the quest to find these Elzybells stamps. After much searching, I discovered the ONLY place to purchase them was from the creator, in the UK. Their blog is here: http://elzybells.typepad.com/my_weblog/.
I figured I'd be able to find something similar in the US, either online or at a craft store, but no luck. The new JoAnns Super store had ZERO coffee themed stamps, and AC Moore had only 2 small wood mounted ones.
One unique feature of this set is the ability to 'build' an image, cups, handles, etc.
I'm in love. Perhaps you, too?
This was a sneak peek of the new release from Elzybells, which debuted on Monday. The stamp on the above card is from the set 'Tea for Two.'
After emailing the creator, I began the quest to find these Elzybells stamps. After much searching, I discovered the ONLY place to purchase them was from the creator, in the UK. Their blog is here: http://elzybells.typepad.com/my_weblog/.
I figured I'd be able to find something similar in the US, either online or at a craft store, but no luck. The new JoAnns Super store had ZERO coffee themed stamps, and AC Moore had only 2 small wood mounted ones.
One unique feature of this set is the ability to 'build' an image, cups, handles, etc.
I'm in love. Perhaps you, too?
Tuesday, February 3, 2009
In Pursuit of a New Diagnosis
For the last six years I have been taking a holiday from my regular life. I've been on 'sick leave.'
It almost seems comical that so much time has past me by. I've been absent from my career, my friends, and missed so many events. Even my wedding... That's right, my first marriage, and I was too sick to have a ceremony that in any way resembled the one I'd been dreaming of since I was a child. Instead, we went to a hastily arranged 'quickie' wedding at a marriage commissioner's house. No one was there with us, as nobody knew of our plans. There were no flowers, no champagne, and no celebration. My new husband took me to lunch afterward, but no one had any idea that this was our first meal as a married couple. I felt very alone at that moment.
My husband had to get back to work, so we went home, and at his request I removed my newly placed wedding ring before getting out of the car, so my mother would not know what we'd done. The one tangible symbol that I was married, and I had to lay that aside, as well. I cried until sunset.
I am so blessed to have my wonderful husband, but our wedding day left much to be desired. Just another non-event in my uneventful life. Celebrations, so it seems, are for others. That was almost five years ago, though, so I have moved on.
But I digress. Five doctors have diagnosed me with a brain disease, for which no treatment has helped. No drugs have helped the 24 hour-a-day pain I experience. There are times where the pain is so hideous, I hardly believe I can survive the next five minutes of it, let alone a few days. Thus, I've been living with the diagnosis of Intractable Migraine disease.
In October of 2008, my neurologist referred me to another neurologist for a consult. The new doctor had a different idea about what might be wrong with me. He had a theory my problems stemmed from intracranial hypertension. If that diagnosis is correct, then I might benefit from some treatments I've never had. I went for yet another series of tests. The last one was in December, but it was unsuccessful, so I'm having that one repeated (a lumbar puncture, AKA a spinal tap) tomorrow at Alexandria hospital, so that they can use a method called fluoroscopy to see the spine. Hopefully, they can withdraw some fluid this time, and get some information from analyzing it. If my intracranial pressure is indeed too high, the doctor says I may experience some relief from the head pain within a few hours after the procedure. Many tests will be run on the tubes of CSF (Cerebral Spinal Fluid) that they retrieve, and perhaps we'll get some good information from those.
At this point, I'm trying to live in the moment of getting a proper diagnosis. I can focus on treatment options later. It's been a long quest to get here, and I never could have made it without the love and care of my husband, Bob. He is my rock, and evidence to me that God is alive and well. Even on the longest, most awful days, I know I'm not alone or forgotten.
It almost seems comical that so much time has past me by. I've been absent from my career, my friends, and missed so many events. Even my wedding... That's right, my first marriage, and I was too sick to have a ceremony that in any way resembled the one I'd been dreaming of since I was a child. Instead, we went to a hastily arranged 'quickie' wedding at a marriage commissioner's house. No one was there with us, as nobody knew of our plans. There were no flowers, no champagne, and no celebration. My new husband took me to lunch afterward, but no one had any idea that this was our first meal as a married couple. I felt very alone at that moment.
My husband had to get back to work, so we went home, and at his request I removed my newly placed wedding ring before getting out of the car, so my mother would not know what we'd done. The one tangible symbol that I was married, and I had to lay that aside, as well. I cried until sunset.
I am so blessed to have my wonderful husband, but our wedding day left much to be desired. Just another non-event in my uneventful life. Celebrations, so it seems, are for others. That was almost five years ago, though, so I have moved on.
But I digress. Five doctors have diagnosed me with a brain disease, for which no treatment has helped. No drugs have helped the 24 hour-a-day pain I experience. There are times where the pain is so hideous, I hardly believe I can survive the next five minutes of it, let alone a few days. Thus, I've been living with the diagnosis of Intractable Migraine disease.
In October of 2008, my neurologist referred me to another neurologist for a consult. The new doctor had a different idea about what might be wrong with me. He had a theory my problems stemmed from intracranial hypertension. If that diagnosis is correct, then I might benefit from some treatments I've never had. I went for yet another series of tests. The last one was in December, but it was unsuccessful, so I'm having that one repeated (a lumbar puncture, AKA a spinal tap) tomorrow at Alexandria hospital, so that they can use a method called fluoroscopy to see the spine. Hopefully, they can withdraw some fluid this time, and get some information from analyzing it. If my intracranial pressure is indeed too high, the doctor says I may experience some relief from the head pain within a few hours after the procedure. Many tests will be run on the tubes of CSF (Cerebral Spinal Fluid) that they retrieve, and perhaps we'll get some good information from those.
At this point, I'm trying to live in the moment of getting a proper diagnosis. I can focus on treatment options later. It's been a long quest to get here, and I never could have made it without the love and care of my husband, Bob. He is my rock, and evidence to me that God is alive and well. Even on the longest, most awful days, I know I'm not alone or forgotten.
Wednesday, November 19, 2008
My Studio
Greetings!
I enjoy paper crafting: scrapbooking, card making, etc. As this can be a product-intensive hobby, it's nice to have one's own space in which to create. One major benefit is not having to put everything away each time I'm finished, too.
Today I'm giving you a peek into my space. While not large, it works out pretty well. It's a little odd, because it's a loft space, above my bedroom, but only on two sides. So, it's an L-shaped loft with many windows and great views.
I'm slightly obsessed with organization; in fact, I spend more time with that than actual crafting! I'm hoping to change that, as I pretty much have permanent places for everything. If only I could be so organized in other rooms... I have hope.
Here's a couple of views of my space.
Enjoy!
Thursday, November 13, 2008
Life ON the Grid
My brother and his girlfriend would never have this problem. They live pretty much off the grid. Yep solar & all, the real deal.
We, on the other hand, are dependent upon Amerigas & Dominion Power to keep us warm and basking in the luxury of our appliances & electronics.
Last night, my Mom mentioned she had to take a shower with cold water. What??? So, I figured the hot water heated had died. However, the other hot water heater was also cold. Neither the stove was working, nor the heat. (Our heating system - Apollo- runs off the hot water heaters. If there's no hot water, there's no heat.)
It seems the propane had run out.
We've been here five and a half years, and this is the first time it happened. We have the service with the gas company, such that they automatically deliver when it gets low, but somehow we fell through the cracks with that system. The after-hours line said someone would call me this morning, first thing, to set up a time for a delivery today. The catch is we had to be home, because the gas man would have to come inside to check all the propane-using appliances.
Great, gotta postpone Mom's dr.'s appointment.
It only got to 60 degrees (F) in my bedroom, so that wasn't too bad. Since I get too warm often, a little cool is fine by me. We have a space heater for Mom (she's very cold natured) so she was comfortable. One helpful feature of having propane is that when the electricity goes out, we're still able to use the stove, and take hot showers. But this was the gas.
As of 9:30 this moaning, I'd heard nada, so I rang them up. After 3o minutes of being put on hold and transferred, we got a delivery set up. Typically on a cool fall day (48 degrees midday today) by mid morning we'd get some warming in the house, thanks to the passive solar provided by the plethora of windows on the south and west sides of the house. But today, it's cloudy and raining, so no warmth from the sun.
The gas man cometh and now goeth, and we are 'cooking with gas' again. And I can run the dishwasher! Woo-hoo! And take a shower, praise God.
Oh yeah, and the gas company owes us a whopping $25 for this inconvenience. Wow, I can hardly wait to get that.
We, on the other hand, are dependent upon Amerigas & Dominion Power to keep us warm and basking in the luxury of our appliances & electronics.
Last night, my Mom mentioned she had to take a shower with cold water. What??? So, I figured the hot water heated had died. However, the other hot water heater was also cold. Neither the stove was working, nor the heat. (Our heating system - Apollo- runs off the hot water heaters. If there's no hot water, there's no heat.)
It seems the propane had run out.
We've been here five and a half years, and this is the first time it happened. We have the service with the gas company, such that they automatically deliver when it gets low, but somehow we fell through the cracks with that system. The after-hours line said someone would call me this morning, first thing, to set up a time for a delivery today. The catch is we had to be home, because the gas man would have to come inside to check all the propane-using appliances.
Great, gotta postpone Mom's dr.'s appointment.
It only got to 60 degrees (F) in my bedroom, so that wasn't too bad. Since I get too warm often, a little cool is fine by me. We have a space heater for Mom (she's very cold natured) so she was comfortable. One helpful feature of having propane is that when the electricity goes out, we're still able to use the stove, and take hot showers. But this was the gas.
As of 9:30 this moaning, I'd heard nada, so I rang them up. After 3o minutes of being put on hold and transferred, we got a delivery set up. Typically on a cool fall day (48 degrees midday today) by mid morning we'd get some warming in the house, thanks to the passive solar provided by the plethora of windows on the south and west sides of the house. But today, it's cloudy and raining, so no warmth from the sun.
The gas man cometh and now goeth, and we are 'cooking with gas' again. And I can run the dishwasher! Woo-hoo! And take a shower, praise God.
Oh yeah, and the gas company owes us a whopping $25 for this inconvenience. Wow, I can hardly wait to get that.
Friday, October 31, 2008
At the Beginning...
of my blogging journey. As an author, that is, because I sure have read a lot of blogs. Mostly other crafters', from which I have gathered inspiration for many new projects and techniques.
My goal here, however, isn't so much to teach new ideas, but really just to share the path I'm on now, and if anyone derives anything from it, so much the better. Even though I sometimes feel isolated with what I'm going through, I've lived long enough to realize there's probably someone else who has trod in similar shoes. Perhaps I will gain something from the writing process, and time will tell if reading my experiences gives somebody some insight.
It seems as though most bloggers try and keep their posts on a main theme, for instance, if I wanted to share my craft projects, then I wouldn't write about my illness here, or care giving for my Mom, family struggles, etc. I have even seen authors have multiple blogs, and that's annoying for me when they reference something on their 'other blog'. Holy smokes, if I'm giving you my valuable time, please don't even think I want to exert any more effort by visiting another one of your blogs. Frankly, if you have something to say, spit it out. Don't make me hunt for it. I don't want to explore your rationale for having multiple blogs.
Therefore, I've decided to go with a 'multiple topic' blog. If the spirit moves me, I will write about it. If it falls out of bounds of what one wants to read, then scroll on, baby. Scroll on!
My goal here, however, isn't so much to teach new ideas, but really just to share the path I'm on now, and if anyone derives anything from it, so much the better. Even though I sometimes feel isolated with what I'm going through, I've lived long enough to realize there's probably someone else who has trod in similar shoes. Perhaps I will gain something from the writing process, and time will tell if reading my experiences gives somebody some insight.
It seems as though most bloggers try and keep their posts on a main theme, for instance, if I wanted to share my craft projects, then I wouldn't write about my illness here, or care giving for my Mom, family struggles, etc. I have even seen authors have multiple blogs, and that's annoying for me when they reference something on their 'other blog'. Holy smokes, if I'm giving you my valuable time, please don't even think I want to exert any more effort by visiting another one of your blogs. Frankly, if you have something to say, spit it out. Don't make me hunt for it. I don't want to explore your rationale for having multiple blogs.
Therefore, I've decided to go with a 'multiple topic' blog. If the spirit moves me, I will write about it. If it falls out of bounds of what one wants to read, then scroll on, baby. Scroll on!
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