Friday, July 11, 2008
medium attack this afternoon; heavy brain fog, light headed, progressive paralysis in feet, hands and legs. CC came home just as it began to hit; I managed to call her just prior to hand problems.
Looks like no time of day is safe again...
I think I'm pretty used to the pain now...I think, anyway.
tomorrow?
Friday, July 11, 2008
Friday Morning and Early Afternoon...
Friday, July 11, 2008
Went to sleep around 3:00 a.m. and set my alarm for 9:00 a.m. to hopefully turn my sleeping pattern around tonight.
I woke up with my left have numb and useless (for the most part) but it is now 12:45 p.m. and my hand is back to its usual self.
The kids and I took Annie for a walk around the block with Missy walking Annie and Joshy riding on my lap. Once we got 2/3rds of the way around, I asked to hold Annie's leash and I walked her the rest of the way back. I learned the key to it is keeping her leash very short and right next to my chair and then she walked right beside me without a struggle or strain.
I am in the process of backing up CC's computer to an external harddrive that we bought last weekend. Her computer is the main computer for us and holds all of our *necessary* information and has yet, until today, never been backed up. Why now? Because it has been showing signs of small *strokes* shall we say and has had too much crap on it that she and I didn't put there...so we now have an external drive that will back up our computers safely.
Missy's computer freaked out at some point, unbeknownst to me, and they rebooted several times without success..I'm impressed it has chosen to still *run*, though it is playing by its own rules now and has removed my administrator privileges so I cannot install, uninstall, change or otherwise fix any issues, like saying it is on the internet but leaving a blank screen and hiding the tool bar unless you move the mouse to the top of the screen...all of this happened after it rebooted for me after much investigation and such.
Anyway, the good thing is that I can now re-install windows XP and Office on it and then put back the data we wanted to keep that I saved.
I think we are going to begin video taping my attacks, if we can, so we have physical facts to share with the MDs once we actually FIND trustworthy and HELPFUL and CARING MDs. I believe they exist, I just have no idea where they are.
Onward and forward...may I have no attacks today.
peace-
Went to sleep around 3:00 a.m. and set my alarm for 9:00 a.m. to hopefully turn my sleeping pattern around tonight.
I woke up with my left have numb and useless (for the most part) but it is now 12:45 p.m. and my hand is back to its usual self.
The kids and I took Annie for a walk around the block with Missy walking Annie and Joshy riding on my lap. Once we got 2/3rds of the way around, I asked to hold Annie's leash and I walked her the rest of the way back. I learned the key to it is keeping her leash very short and right next to my chair and then she walked right beside me without a struggle or strain.
I am in the process of backing up CC's computer to an external harddrive that we bought last weekend. Her computer is the main computer for us and holds all of our *necessary* information and has yet, until today, never been backed up. Why now? Because it has been showing signs of small *strokes* shall we say and has had too much crap on it that she and I didn't put there...so we now have an external drive that will back up our computers safely.
Missy's computer freaked out at some point, unbeknownst to me, and they rebooted several times without success..I'm impressed it has chosen to still *run*, though it is playing by its own rules now and has removed my administrator privileges so I cannot install, uninstall, change or otherwise fix any issues, like saying it is on the internet but leaving a blank screen and hiding the tool bar unless you move the mouse to the top of the screen...all of this happened after it rebooted for me after much investigation and such.
Anyway, the good thing is that I can now re-install windows XP and Office on it and then put back the data we wanted to keep that I saved.
I think we are going to begin video taping my attacks, if we can, so we have physical facts to share with the MDs once we actually FIND trustworthy and HELPFUL and CARING MDs. I believe they exist, I just have no idea where they are.
Onward and forward...may I have no attacks today.
peace-
Another Late Night...
Friday, July 11, 2008
First, the best news of the year; My buddy and brother Scott Rose and his wife Kristy welcomed a baby girl into the world Thursday morning!!!!!!!!!!!!!!!!!!! I am the proudest uncle on the face of the earth! *We love you guys and miss you terribly!*
Wednesday night ended with a hard and nasty attack after being downstairs and watching a movie with Missy and CC. I was able to force myself up the stairs and knock the bedroom door out of the way and make it onto the bed before I completely had to give in to the spasms that began when leaving the downstairs bathroom. That was hell.
Today was PT which was a blessing, but I remained in a brain fog all day; slow to think, reply, answer, decide, etc.
By early afternoon I sat in the LazyBoy and watched some TV and then noticed a severe sweating, soaking my shirt and sweats within a matter of a minute but the sweat continued for a number of minutes more. Brain fog became thick and then I realized that I couldn't move anything. My face, eyes and throat were not paralyzed and I was able to whisper in very short difficult breaths. this one scared me a lot, though CC stayed beside me all the time; coaching me, reminding me how to get through it. 4 to 5 hours later I am able to stagger/shuffle with my cane. One of these times, we just have to go in (911) to see if they can some how "break the chain" of these attacks and monitor me PROPERLY without casting their unbelieving eyes and spouting outdated, incorrect assumptions and under-the-breath remarks about a disease that I am intimately familiar with now and truly battle every single day.
Tomorrow will be a "down" day, more than likely.
It's 2:10 AM. Perhaps I can sleep now...
First, the best news of the year; My buddy and brother Scott Rose and his wife Kristy welcomed a baby girl into the world Thursday morning!!!!!!!!!!!!!!!!!!! I am the proudest uncle on the face of the earth! *We love you guys and miss you terribly!*
Wednesday night ended with a hard and nasty attack after being downstairs and watching a movie with Missy and CC. I was able to force myself up the stairs and knock the bedroom door out of the way and make it onto the bed before I completely had to give in to the spasms that began when leaving the downstairs bathroom. That was hell.
Today was PT which was a blessing, but I remained in a brain fog all day; slow to think, reply, answer, decide, etc.
By early afternoon I sat in the LazyBoy and watched some TV and then noticed a severe sweating, soaking my shirt and sweats within a matter of a minute but the sweat continued for a number of minutes more. Brain fog became thick and then I realized that I couldn't move anything. My face, eyes and throat were not paralyzed and I was able to whisper in very short difficult breaths. this one scared me a lot, though CC stayed beside me all the time; coaching me, reminding me how to get through it. 4 to 5 hours later I am able to stagger/shuffle with my cane. One of these times, we just have to go in (911) to see if they can some how "break the chain" of these attacks and monitor me PROPERLY without casting their unbelieving eyes and spouting outdated, incorrect assumptions and under-the-breath remarks about a disease that I am intimately familiar with now and truly battle every single day.
Tomorrow will be a "down" day, more than likely.
It's 2:10 AM. Perhaps I can sleep now...
Wednesday, July 09, 2008
So Far, So Good...For the Most Part
Wednesday, July 09, 2008
Well, yesterday came and went with no "formed" attack, that is to say that I was pretty aware of the potassium dumps within my system (4 or 5 I think) but none of them turned the corner into an actual attack. So far today, I have had similar episodes of potassium dumps but nothing has come of them, most fortunately. Hopefully tonight will not be eventful either, however, it is usually in the evening when things go South.
The smoke here is literally thick...it's hard to believe. I'm staying inside due to the density of smoke in the air. You can physically see it, as if you were downwind at a campfire; the haze is motionless and still and very difficult to breathe. Supposedly, this weekend will bring us some *fresh* air from the coast...I hope so. Today is a good day to not live in California...I'm thinking Colorado or Tennessee would be nice.
The kids are bored having to stay inside but when they try to venture outside, even for a minute, they retreat back inside with haste and distorted faces showing their displeasure.
Well, rats. breathing is a little harder right now, so I'm going to stop writing and go put on some o2 (oxygen) and see if it lets up or "turns"...
-peace
Well, yesterday came and went with no "formed" attack, that is to say that I was pretty aware of the potassium dumps within my system (4 or 5 I think) but none of them turned the corner into an actual attack. So far today, I have had similar episodes of potassium dumps but nothing has come of them, most fortunately. Hopefully tonight will not be eventful either, however, it is usually in the evening when things go South.
The smoke here is literally thick...it's hard to believe. I'm staying inside due to the density of smoke in the air. You can physically see it, as if you were downwind at a campfire; the haze is motionless and still and very difficult to breathe. Supposedly, this weekend will bring us some *fresh* air from the coast...I hope so. Today is a good day to not live in California...I'm thinking Colorado or Tennessee would be nice.
The kids are bored having to stay inside but when they try to venture outside, even for a minute, they retreat back inside with haste and distorted faces showing their displeasure.
Well, rats. breathing is a little harder right now, so I'm going to stop writing and go put on some o2 (oxygen) and see if it lets up or "turns"...
-peace
Tuesday, July 08, 2008
The Past 48+ hours (or so...)
Tuesday, July 08, 2008
HKPP...
For the past week, I have had attacks every day; generally late afternoon towards evening for the most part. I was down yesterday for nearly the entire day because being up was more painful than being down, but today was less entertaining, so to speak, and I have been down all day except for my appointment at PT which my aunt drove me to and from, and even that was a wheelchair journey.
Yesterday, CC took me to the mall for another wheelchair journey to Border's Books who is closing their Sunrise Mall location, so everything in the store is on sale; 40% - 70% off, so we went and got some D&D stuff at a steal of a price. When I got home I was wiped out but did not deal with an attack until 7:30 or so.
My gut on what's going on is that I'm having several smaller attacks which are part of a single, larger Abortive attack which will likely culminate with a nasty hit at some point sooner than later. I'm not trying to be a "doom sayer" or something like that, but this has been a pattern from recent history.
Some of you have called but I have not been able to carry on a conversation and thus have not taken the call; please forgive me, I'm not trying to lock myself away or avoid anyone. Some days I can handle conversations and other days are tough to deal with.
Anyway, I need to get back to bed and chill on concentrating on writing. Oh yeah, in case I didn't note it before now, CC and I DO have new bed(s) that are motorized and completely adjustable. When the beds are pushed together they make a Cal King size. What an incredible difference to have new mattresses and the new frames, the frames are from a close family friend from the Bay Area; the blessing of them leaves us speechless.
For now, peace. Pray for pain relief...
HKPP...
For the past week, I have had attacks every day; generally late afternoon towards evening for the most part. I was down yesterday for nearly the entire day because being up was more painful than being down, but today was less entertaining, so to speak, and I have been down all day except for my appointment at PT which my aunt drove me to and from, and even that was a wheelchair journey.
Yesterday, CC took me to the mall for another wheelchair journey to Border's Books who is closing their Sunrise Mall location, so everything in the store is on sale; 40% - 70% off, so we went and got some D&D stuff at a steal of a price. When I got home I was wiped out but did not deal with an attack until 7:30 or so.
My gut on what's going on is that I'm having several smaller attacks which are part of a single, larger Abortive attack which will likely culminate with a nasty hit at some point sooner than later. I'm not trying to be a "doom sayer" or something like that, but this has been a pattern from recent history.
Some of you have called but I have not been able to carry on a conversation and thus have not taken the call; please forgive me, I'm not trying to lock myself away or avoid anyone. Some days I can handle conversations and other days are tough to deal with.
Anyway, I need to get back to bed and chill on concentrating on writing. Oh yeah, in case I didn't note it before now, CC and I DO have new bed(s) that are motorized and completely adjustable. When the beds are pushed together they make a Cal King size. What an incredible difference to have new mattresses and the new frames, the frames are from a close family friend from the Bay Area; the blessing of them leaves us speechless.
For now, peace. Pray for pain relief...
Sunday, July 06, 2008
A Saturday Outside
Saturday, July 05, 2008
We all slept in a bit this morning, mostly because we all stand up quite late last night. Neither CC or I got a very good nights sleep, but I believe that's because we were sleeping on brand-new beds with brand-new sheets that felt more like hotel sheets than home sheets. I guess also, our door was shut for the night, which meant that we didn't have any air circulation through the room, so it was a stuffy night as well. Tonight is very different; we have our doors open so that we can have good care circulation and we have the house them on as well, which will help to cool the house down, especially the upstairs.
So, this morning was a lazy start everybody kind of getting going at their own speed, no real rush involved, and we decided, off the cuff, that we would make a run up to the Galleria Mall in Roseville and shop for a little while and then head down to the Halden's hotel and swim in their pool (the kids, that is) and then we would go back to our house for hamburgers and then back down to swim for whatever amount of time would be left of the evening. Regrettably, this plan was interrupted while we were all sitting in the food court at the mall with everyone eating their snack and I have finished my snack that I had brought from home. An attack started very slowly, taking my independence away, one brick at a time. I was in the motorized chair, which had been fun, and liberating, in fact, I was able to keep up with those who were shopping and looking around and I have for the most part gotten over my vanity regarding how I look sitting in a chair and the fact that I need it. Anyway, the attack hit and as I sat in the chair, we disconnected the control module from the arm of the chair and my nephew Erik walked beside me controlling the chair and steering us out to the sidewalk to where the van was waiting and got me loaded in and we headed for home. Not a very comfortable ride home, but then they never are. Being that the spasms did not kick in until later, I just simply couldn't move, so my head would bounce around, depending on if we turned, started or stopped. If I remember right, CC, was driving with one hand and doing her best to hold my head with the other; talk about multitasking...
I came-to in the big black chair with CC sitting beside me. The standard fallouts from these attacks are general weakness throughout the body, some element of brain fog, very sore shoulders, neck, hips, lower back and what feels like swollen hands and fingers, even though the hands and fingers are not swollen; they just hurt like hell.
CC, Erik and Josh all stayed with me at the house, while everyone else drove down from the mall to our house, and they picked up Erik and Joshua and then went to the hotel and went swimming for the evening. They ended up just doing pizza at the pool while CC and I worked on some of the leftovers in the fridge.
It's now 1:20 a.m. and I HAVE GOT TO get to bed sooner than this...not good.
-peace
We all slept in a bit this morning, mostly because we all stand up quite late last night. Neither CC or I got a very good nights sleep, but I believe that's because we were sleeping on brand-new beds with brand-new sheets that felt more like hotel sheets than home sheets. I guess also, our door was shut for the night, which meant that we didn't have any air circulation through the room, so it was a stuffy night as well. Tonight is very different; we have our doors open so that we can have good care circulation and we have the house them on as well, which will help to cool the house down, especially the upstairs.
So, this morning was a lazy start everybody kind of getting going at their own speed, no real rush involved, and we decided, off the cuff, that we would make a run up to the Galleria Mall in Roseville and shop for a little while and then head down to the Halden's hotel and swim in their pool (the kids, that is) and then we would go back to our house for hamburgers and then back down to swim for whatever amount of time would be left of the evening. Regrettably, this plan was interrupted while we were all sitting in the food court at the mall with everyone eating their snack and I have finished my snack that I had brought from home. An attack started very slowly, taking my independence away, one brick at a time. I was in the motorized chair, which had been fun, and liberating, in fact, I was able to keep up with those who were shopping and looking around and I have for the most part gotten over my vanity regarding how I look sitting in a chair and the fact that I need it. Anyway, the attack hit and as I sat in the chair, we disconnected the control module from the arm of the chair and my nephew Erik walked beside me controlling the chair and steering us out to the sidewalk to where the van was waiting and got me loaded in and we headed for home. Not a very comfortable ride home, but then they never are. Being that the spasms did not kick in until later, I just simply couldn't move, so my head would bounce around, depending on if we turned, started or stopped. If I remember right, CC, was driving with one hand and doing her best to hold my head with the other; talk about multitasking...
I came-to in the big black chair with CC sitting beside me. The standard fallouts from these attacks are general weakness throughout the body, some element of brain fog, very sore shoulders, neck, hips, lower back and what feels like swollen hands and fingers, even though the hands and fingers are not swollen; they just hurt like hell.
CC, Erik and Josh all stayed with me at the house, while everyone else drove down from the mall to our house, and they picked up Erik and Joshua and then went to the hotel and went swimming for the evening. They ended up just doing pizza at the pool while CC and I worked on some of the leftovers in the fridge.
It's now 1:20 a.m. and I HAVE GOT TO get to bed sooner than this...not good.
-peace
Friday, July 04, 2008
4th of July...
Friday, July 04, 2008
I decided to get back out of bed to post a brief one about today-
I slept in until 11:00 and since I have been using the oxygen with my CPAP machine, I have been sleeping better, more restful I think. It's all about the quality of my life now so that I enjoy the quantity of my life. For a while there, I wasn't enjoying much of anything unless it was related directly to my wife or children.
We bought 2 mattresses designed for motorized, adjustable beds from Sleep Train, which arrived today AND my sister and family (sans my oldest nephew Sterling) came up for the weekend and brought with them 2 adjustable beds from friends of the family in the Bay Area who were letting them go, so all in all, we have a new bed(s) for us; 2 extra long twins which put together make a California King, the same size bed we had.
Our bed had been on the floor which was VERY hard for me to get into and out of, but we were trying to figure out how we would go about buying a new one, could we afford it, what kind do we need/want, etc. Now we have a Craftmatic frame with Simmons mattresses and full adjustability. It is fantastic. We are both excited.
I stayed on my feet for the most of the day getting things cleaned up and organized in my office, but by nightfall I was hurting quite a bit in my hips and lower back. The kids went with the Haldens to their hotel (which has a pool) and they swam for a little while while CC and I stayed home and briefly sat outside on the sidewalk (me in the regular wheelchair) and watched a couple of the neighbors set off fireworks. After coming inside, we went upstairs and laid on our NEW BEDS and tried out all the functions, which worked great. CC then left to pick up our kids and Kirsten and Erik and come back and I watched TV until I realized that I had not posted, so that is the catch up for today; no attacks, just higher pain level and normal evening exhaustion.
Oh yeah, I got to speak to a good friend from many years ago when he called today; Steve Brown from my life at Trinity. He wishes to send his greetings to all who knew him and hopes to be able to be back in touch with our "old crowd" from our days back then. Let me know and I will forward you his email address. Steve, you really blessed me today by taking the time to call me and chat for a while. My day was made with that phone call. With my sister coming up, it was icing on the cake, so to speak.
Done-
I hope your 4th was fun and safe-
peace
I decided to get back out of bed to post a brief one about today-
I slept in until 11:00 and since I have been using the oxygen with my CPAP machine, I have been sleeping better, more restful I think. It's all about the quality of my life now so that I enjoy the quantity of my life. For a while there, I wasn't enjoying much of anything unless it was related directly to my wife or children.
We bought 2 mattresses designed for motorized, adjustable beds from Sleep Train, which arrived today AND my sister and family (sans my oldest nephew Sterling) came up for the weekend and brought with them 2 adjustable beds from friends of the family in the Bay Area who were letting them go, so all in all, we have a new bed(s) for us; 2 extra long twins which put together make a California King, the same size bed we had.
Our bed had been on the floor which was VERY hard for me to get into and out of, but we were trying to figure out how we would go about buying a new one, could we afford it, what kind do we need/want, etc. Now we have a Craftmatic frame with Simmons mattresses and full adjustability. It is fantastic. We are both excited.
I stayed on my feet for the most of the day getting things cleaned up and organized in my office, but by nightfall I was hurting quite a bit in my hips and lower back. The kids went with the Haldens to their hotel (which has a pool) and they swam for a little while while CC and I stayed home and briefly sat outside on the sidewalk (me in the regular wheelchair) and watched a couple of the neighbors set off fireworks. After coming inside, we went upstairs and laid on our NEW BEDS and tried out all the functions, which worked great. CC then left to pick up our kids and Kirsten and Erik and come back and I watched TV until I realized that I had not posted, so that is the catch up for today; no attacks, just higher pain level and normal evening exhaustion.
Oh yeah, I got to speak to a good friend from many years ago when he called today; Steve Brown from my life at Trinity. He wishes to send his greetings to all who knew him and hopes to be able to be back in touch with our "old crowd" from our days back then. Let me know and I will forward you his email address. Steve, you really blessed me today by taking the time to call me and chat for a while. My day was made with that phone call. With my sister coming up, it was icing on the cake, so to speak.
Done-
I hope your 4th was fun and safe-
peace
Thursday, July 03, 2008
Striving to stay current...*revised at 8:00 p.m.
Thursday, July 03, 2008
Yesterday evening, just after going down stairs for dinner, another attack creeped in. This one began very slowly, almost in a surreal way in that I was able to keep my eyes open for the better part of the start of it, however, once the spasms kicked into full swing, I realized I couldn't see anything and could only hear, which is more normal. It was 10:00 p.m. when CC woke me up to head up to bed but my mind began to race and body felt pretty bad, so going right to sleep wasn't an option, hence I was awake until 2:30 a.m. and emailed a few folks 'round that time.
Currently, it is 6:10 p.m. and CC just woke me up from a 3 to 3 1/2 hour nap that I took while she and the 4 kids (Missy, Joshua and a best friend of ours 2 children) went to see "Get Smart". We watch her kids for her while she is working during the week, for the most part. Anyway, I didn't go in hopes of resting while staying home and kept my cell phone in hand in case I needed help (the cell has a one-key speed dial for her and my aunt and a few others and has proven itself a life saver, literally, in the past. As it was today, no significant issues requiring a call.
At this moment in time, I'm not feeling as well as I want to; chest pain has lasted now for a few days straight with no relief, different muscle pains all over rotate as they see fit (I guess) and nausea is now an apparent permanent staple in my existence. In particular, the nausea is most frustrating simply for how it makes me feel, which is *blah*, but it is a standard symptom for HKPP due to the mucous created by the body in the stomach , throat and head, all of which are the body's attempts to protect itself from potassium dumps within my system...bleh.
Time for dinner...6:26 p.m.
Finished dinner and began working on getting the house/Living Room cleaned up and such, including getting a VCR hooked in to our Frankenstein-ed TV/stereo system...and now, an hour and a half later, I'm in fair pain and elevated on CC and the kid's radars, so to speak. I'm to stop "being productive" until tomorrow sometime which is a good but frustrating call. My mind wants to finish the projects I have begun but my body cannot cooperate, so pain sets in, I begin to have breathing issues and I have to lay down with some oxygen (which I've been on all day). Instead of remarking continually about the oxygen, from here on out, it will just be assumed that I'm on oxygen nearly 24x7 because that is essentially the truth of the matter, though it sounds more dramatic to say it. It's a given and that's that.
CC found an old baby monitor that we had used with her mom living with us so that we could hear her at night and see her from the remote camera and mic, so we are going to hook that up for me when I am down so that they can hear me if things go South, so to speak. That will be helpful.
Okay, I'm done for tonight. 8:10 p.m.
peace.
Yesterday evening, just after going down stairs for dinner, another attack creeped in. This one began very slowly, almost in a surreal way in that I was able to keep my eyes open for the better part of the start of it, however, once the spasms kicked into full swing, I realized I couldn't see anything and could only hear, which is more normal. It was 10:00 p.m. when CC woke me up to head up to bed but my mind began to race and body felt pretty bad, so going right to sleep wasn't an option, hence I was awake until 2:30 a.m. and emailed a few folks 'round that time.
Currently, it is 6:10 p.m. and CC just woke me up from a 3 to 3 1/2 hour nap that I took while she and the 4 kids (Missy, Joshua and a best friend of ours 2 children) went to see "Get Smart". We watch her kids for her while she is working during the week, for the most part. Anyway, I didn't go in hopes of resting while staying home and kept my cell phone in hand in case I needed help (the cell has a one-key speed dial for her and my aunt and a few others and has proven itself a life saver, literally, in the past. As it was today, no significant issues requiring a call.
At this moment in time, I'm not feeling as well as I want to; chest pain has lasted now for a few days straight with no relief, different muscle pains all over rotate as they see fit (I guess) and nausea is now an apparent permanent staple in my existence. In particular, the nausea is most frustrating simply for how it makes me feel, which is *blah*, but it is a standard symptom for HKPP due to the mucous created by the body in the stomach , throat and head, all of which are the body's attempts to protect itself from potassium dumps within my system...bleh.
Time for dinner...6:26 p.m.
Finished dinner and began working on getting the house/Living Room cleaned up and such, including getting a VCR hooked in to our Frankenstein-ed TV/stereo system...and now, an hour and a half later, I'm in fair pain and elevated on CC and the kid's radars, so to speak. I'm to stop "being productive" until tomorrow sometime which is a good but frustrating call. My mind wants to finish the projects I have begun but my body cannot cooperate, so pain sets in, I begin to have breathing issues and I have to lay down with some oxygen (which I've been on all day). Instead of remarking continually about the oxygen, from here on out, it will just be assumed that I'm on oxygen nearly 24x7 because that is essentially the truth of the matter, though it sounds more dramatic to say it. It's a given and that's that.
CC found an old baby monitor that we had used with her mom living with us so that we could hear her at night and see her from the remote camera and mic, so we are going to hook that up for me when I am down so that they can hear me if things go South, so to speak. That will be helpful.
Okay, I'm done for tonight. 8:10 p.m.
peace.
Wednesday, July 02, 2008
Look ma! No delay!
Wednesday, July 2, 2008 (See! I CAN post an entry before midnight...I knew I could)
The last couple days have provided only a few hours of “normalcy” as I once new it, meaning that for a few hours both days, I have had enough strength and constitution to accomplish a couple things off my list of waiting tasks. Only a few hours out of 48…I think I mention recently that this past Saturday and Sunday included attacks each day, noting that Saturday’s attack, though not triggered by carb spike or potassium drop, was especially nasty and lasted several hours. Those ones hurt the most, aside from the pain that results from ER visits which can be quite painful as well.
Anyway, today has included exhaustion, shortness of breath, chest pain, cold & clammy skin, sweating intensities and intermittent brain fog.
Last night, after posting another blog entry, I went to bed but this time I hooked my CPAP machine to the oxygen compressor so that I would receive oxygen while I slept. I slept straight through until 10:15 a.m. and woke up much more alert. Another plus in sleeping with the oxygen on is that the compressor provides a regular pulsing white noise which both CC and I respond well to when going to sleep. Sometimes the complete quiet can become a point of concentration, in that it is so quiet that it is hard to get to sleep while hearing every little night noise within and outside the house, if that makes sense…well, it makes sense to me anyway.
I don’t know if I included this point in a previous post, but I am now on oxygen all the time, while at home, on the computer, in the car, etc. On the one hand, that concerns me but on the other, it helps me, so I am striving to keep the focus that it is a helpful thing and not focus on the obvious progression of symptoms…again, I’m not ignoring, I’m just trying not to obsess which is my tendency now when I become concerned or scared.
I got an email from a young lady today who is having to contend with the same types of symptoms I am and is not yet diagnosed correctly, if I had an opinion on the matter…not that I have an opinion…I seldom ever do…not.
Anyway, you can be praying for her and for her speedy recoveries from these debilitating symptoms.
Time to get some food from downstairs; it’s 5:08 PM
-peace
July 02, 2008...See! I CAN write more often than every 2 weeks! I knew I could...
In an effort to cheer myself up before going to bed (it's now 12:43 a.m.), I decided to look through my digital pics on here and found a few to share. Some may have captions and some may not...
Not only did I get to MEET Peter Gabriel, but he shook my hand, took a picture with me and
actually seemed to care about my opinions of the SSL mixing desk I had installed (he now co-owns SSL). George and Andrew of SSL were the ones responsible for providing me with that once in a life time moment; I will never forget what you guys did for me that day at NAB 2006. I miss you guys and think of you both often.
So who's the guy in between Craig Fetter and me? Well, if you like Celine Dion's concerts or recordings, then you like this guy as well; His name is Deny and he has been Celine's audio guy since her very start and is soley repsonsible for harnessing her vocal chops into incredible works with music. In my opinion, he's a craftsman's craftsman and one of the best in the industry...and he knows (knew?) my name.
Not only did I get to MEET Peter Gabriel, but he shook my hand, took a picture with me and
actually seemed to care about my opinions of the SSL mixing desk I had installed (he now co-owns SSL). George and Andrew of SSL were the ones responsible for providing me with that once in a life time moment; I will never forget what you guys did for me that day at NAB 2006. I miss you guys and think of you both often.So who's the guy in between Craig Fetter and me? Well, if you like Celine Dion's concerts or recordings, then you like this guy as well; His name is Deny and he has been Celine's audio guy since her very start and is soley repsonsible for harnessing her vocal chops into incredible works with music. In my opinion, he's a craftsman's craftsman and one of the best in the industry...and he knows (knew?) my name.
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In This Body: Living with HKPP through Faith and Love of family & community with Wade Odum This was recorded on March 19, 2024 On today...
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Wednesday, August 08, 2007 I’m back at home on my bed. It hurts to walk and stand and I’m more than tired. No sleep while we stayed at Rosev...
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This is a pic of Sierra (Ash) and me in Monterey. My heart was filled and greatly blessed by the opportunity to see her and her daddy, Sam ... -
Sunday, February 17, 2008 No hospital stays or ER visits, of which I'm blessed to avoid. Bouts of weakness, near fainting spells, comple...