Wednesday, April 25, 2007

Wednesday, April 25, 2007

2:45 PM
To say I’m struggling is simple and understated. I just wrote to my sister in more depth in hopes of satisfying my need to scream out at someone over what is happening to me and to us as a family. I guess I’ll know how well that worked as I continue to write until I feel done.

My mom left earlier this morning after seeing the kids off to school. She was a huge help to CC and I since this past Friday night. I’m not sure how we would have gotten through these past few days without her help. For sure, CC would have had to been off work, which we cannot afford.

Before leaving for PT this morning, my primary doc called to say that the labs from yesterday’s single draw for my potassium level came back high at 6.0 but my meter, taken at the same time as my lab showed 4.6. One of them is impressively wrong. I went in to get labs done again today after making it through an abbreviated version of my PT and it took them two tries; one on the back of my left hand which they were unsuccessful in finding and then successfully getting a draw after searching around briefly with the needle on the back of my right hand. The veins in my arms are too weak and recessed for them to use for blood draws now. It’s taken nearly 3 hours for the swelling to go down on my right hand after the draw. Both hands hurt.

The sweating and weakness have been more present today. Hard for us to understand. Doctors have no clues or ideas. They have no suggestions or solutions. I feel like there is an “emotional” sniper and a “physical strength” sniper, both working together in tandem, taking critical shots, one at a time and sometimes both at once, just picking me apart each time I stand up.

I’m wanting this blog to be a collection of facts and observations of this battle but I cannot help venting.
CC began a daily food and activity log after this past attack last Friday. Also, I’ve striving to eat “wheat free” as much as I possibly can to see if that has any affect on me; positive or negative.

I wish I could just stop all the medicines all together and be free from this hell that has encamped around and about me and my family. Maybe one day, but not today. Today’s physical and emotional rollercoaster just leaves me battered and bruised. I feel exhausted and outnumbered. There are far more “doctors” who feel that I’m not suffering from HKPP and any that do now, but not one of them has been able to constructively help us understand, anticipate or even prevent these attacks nor have any of them been able to suggest what it is that IS happening if it is not HKPP. How can a doctor, who admits that he/she knows little to nothing about HKPP, and has not actually seen a patient with confirmed HKPP, make ANY sort of educated presumptions or assumptions about HKPP as it may or may not relate to me? They admit that they know crap about HKPP but suggest that it is unlikely that I am suffering from it because I’m not an Asian male, the stereo-typical candidate for having HKPP according the Kaiser’s medical journals.

Boom, it’s 3:22 PM and after not having had the sweats for nearly two hours, they begin with a subtle burning type of sensation across the skin of my forehead, arms and legs and now I begin to sweat. I did nothing but type. I drank nothing, not even water at the time. I don’t normally feel it start like this; I normally just become aware that water is dripping off my chin or glasses, or eyebrows or that my shirt is stuck to chest and back.

Sweating does not seem to be consistently symptomatic with HKPP folks, though it is not uncommon either; some folks seem to deal with it while others are spared. But the weakness, the numbness, the paralysis, the muscle spasms, muscle cramps, muscle jumps at night and at rest, the attacks after high carb intake and intense or extensive physical exertion are ALL common factors with the dozens of others on the HKPP list serve.

For some unsolicited education, there is something called Myoclonus or Myoclonic jerks and they are described in Dorland's Medical Dictionary for Health Consumers as “myoclonus” /my·oc·lo·nus/ (mi-ok´lo-nus) – shock-like contractions of a muscle or a group of muscles. Myoclon´ic. Also noted in the same section and directly related are the following types of myoclonus:
- Essential myoclonus: myoclonus of unknown etiology, involving one or more muscles and elicited by excitement or an attempt at voluntary movement.
- Intention myoclonus: that occurring when voluntary muscle movement is initiated.
- Nocturnal myoclonus: nonpathological myoclonic jerks occurring as a person is falling asleep or is asleep.

I deal with Nocturnal myoclonus. It took me days of looking up symptoms to learn that there is a name for what I experience, something I have brought up to my collection of doctors that NONE of them have diagnosed. Should they have diagnosed it? I suppose not, actually, because none of them are specialists in ANY of the issues I’m contending with, with exception to Doctor Stewart of Nephrology who accurately diagnosed my case of Hyperaldosteronism, which is solidly within his scope of professional focus. In fact, he is one of two of the plethora of doctors I have seen who acknowledges that it IS possible for me to actually suffer from more than one single diagnosis; Dr. Fujioka is the second of the two and he is my primary doctor. All the rest of the docs refuse to accept the possibility that there are multiple diagnoses involved, so much so, that a couple of the referred doctors suggested that I be seen by the psychiatry department in case what I’m experiencing is not entirely physical. One of the folks on line in the HKPP List serve had shared that she received the same suggestion while she was seeking a diagnosis and that after she was seen by the behavioral science department, the presumptions from the psychiatrist were used to prevent her from obtaining a literal diagnosis and she was deemed, more or less, unstable. She then went to check out the docs in the local Muscular Dystrophy clinic and found that she was not unstable but was suffering from a rarely diagnosed disease called Hypokalemic Periodic Paralysis and that she was exhausted emotionally from battling her previous physicians for the past several months.

7:00 PM
Dinner was some regular pasta with chicken parmesan and a salad.
CC just went out with the kids to get some Baskin Robbins for dessert for all of us. My desserts now are very small portions of whatever they get. Moderation is the next key to abstention.
I still feel poorly and am worn down from what feels like a very long day. My emotional state is combustible and fairly fragile with memories, “what ifs”, “maybes” and regrets and mourning of activities I did not want to conclude but have been removed from.
Time to stop writing and space out in the TV direction since I don’t want to read or write anymore tonight.