More in Depth Review

Wednesday, July 23, 2008

Let's see, where to begin today...
Well yesterday, Tuesday, was spent staying down, for the most part. I watched the movie with Joshua and Jayden and then watched my video called "The Police: Synchronicities". It is a video that spans the band' s entire career, and is a collection of behind-the-scenes commentary from each of the band members as well as their manager, and it includes several songs captured in concert. If you like the band The Police, seeing this video is a must. Anyway, I enjoyed watching the video and listening to music. Following that, Renée came and picked up her kids and CC and the kids and I all went to a pottery class that CC and the kids have been taking now for a couple of weeks. Last week, CC had paid for me to go and participate as well, however. I was recovering from an attack that afternoon and just slept until they came back home around 8:30 or 9:00. I really enjoyed the time at the pottery class; it was fun to watch Missy, Joshua and CC all create manifestations of their imagination's ideas in clay. I sat there for a few minutes with this big lump of clay in front of me trying to think of what I would make, even more so, what I would like to create out of clay, but I battled with my confidence as to whether or not I would be successful in creating what I could see in my mind. Once I got past the initial vanity or fear of being unsuccessful (I know that sounds stupid, but that's what was going on in my head). I decided to make a dragon, and by the end of the class, I had created what I had seen in my head, and I was pleased. Whether or not the dragon will survive the oven and glazing process is another question entirely, but I'm hopeful that it will.

I just walked from my office to the hallway and noted that Annie is sleeping on the couch, which I allow her to do when it's just her and I at home, but what is funny and interesting is that any will often use her paws to manipulate the pillows on the couch so that when she lies down she lays her head on a pillow. Right now, she is lying on the couch, lengthwise with her head on a folded blanket that's got to be 4 inches deep. I find that unique in a dog.

The only issue that I had yesterday, are dealing with different manifestations of the disease as well as a progressive disease, which means that the symptoms will change and mutate randomly, or so it would appear to be randomly. The more study, that is done on that I can recall, was when I was finishing saying "goodnight" to Joshua, and was standing in his doorway, when I had a set of sweats hit me, and in a matter of seconds I had soaked I was wearing. I became somewhat lightheaded, and headed back down the hall into our bedroom, where CC was cuddling Missy and I sat on my edge of the bed and waited for a moment for everything to calm down internally. When I got into bed and under the covers, I got slightly chilled and my body froze. I had to wait for a few minutes for that to stop as well, and eventually it did as my body warmed up. When I woke up this morning I realized that I had definitely been sweating during the night, because the sheets and my pillow were distinctly damp from sweating; from my feet to the top of my head. The sensation and realization of that phenomenon is reasonably frustrating for me, but it is a fact of life at this point in the game, a given symptom of HKPP. I know I have mentioned before, what causes the sweating, but as a reminder, my body sweats when there is a potassium exchange at the cellular level, so that when potassium rushes into the cells or into the muscles, the body sweats, and when potassium rushes back into the blood stream, out of the muscles, my body sweats, so it is kind of a "double whammy", if you will. It is also very common for those with HKPP to have attacks during the night while sleeping. It has to do with the state of the muscular system while at rest, that there is a potassium dump within the system and the low level of potassium in the system, combined with the actual drop of potassium within the system, brings on the paralysis or the spasms. These kind of attacks leave me exhausted when I wake up in the morning, often as if I had had no sleep at all, which is completely par for the course with others that have HKPP. I think that one of the biggest challenges in dealing with HKPP and actually getting that kind of diagnosis from a physician, is that the disease itself does not manifest itself identically in each patient, and that, each patient contending with HKPP, has 80% to 90% of the same types of symptoms from similar or same triggers, but it is that 10% to 20% that remain ambiguous and specific to each person that the doctors, looking at those specific symptoms, do not see the relationship or correlation between the symptoms and the people, globally. What I'm trying to say is that, essentially, since the doctors don't see identical symptoms in each person, they then assume that the diagnosis of HKPP is an inaccurate diagnosis, and there must be something else to blame. I believe that the reality is that those of us contending with HKPPHKPP and the more that we learned about it, the more we will be able to treat an prepare those people that have HKPP, but for right now, we do not know enough to be able to anticipate every attack.
I should have also included that, when I woke up this morning, I realized that I have elements of a sore throat; Joshua was the first to experience the sore throat, which lasted a couple of days and then CC was next, and now me. Drag.

Breakfast today was 2 scrambled eggs with a teaspoon of cherry jam; I use the jam as a flavoring with the unsalted and unseasoned eggs. Being that it is now to 31 in the afternoon, I should probably go downstairs and make a lunch/snack.

CC was able to get in to PT yesterday afternoon, which helped her immensely with her jaw and neck pain. A true blessing for her to be able to get in.

For a couple months now, I have been sinking about pursuing another Cardy meter as well as an oximeter to assist in further analysis before and or during attacks. After much dialog with CC, regarding these two items and ideas, we both are in agreement that it would not make a difference in the outcome of the attacks or in the treatment of the attacks.

Attack is started...stopping typiung