So what happened this week?

Okay, so it's been 25 days since I updated the Blog...Hope you weren't holding your breath...
:-o)

Monday:
Monday, Oct. 23, just before 1:00 PM, I was kneeling beside a newly bought tool chest, which was on its back on the ground, installing casters on it, when all of a sudden I became very, very scared. Not knowing why, I looked around the gym I was in and saw nobody and then realized I was sweating profusely and thought something's wrong with me and I'm completely alone; no one will know. Seconds later, I collapsed and was seeing myself crawling towards a door and not making it. Out of nowhere appeared a co-worker then my wife. Somewhere between looking around and crawling, I apparently called CC (my wife) and then a co-worker. They called 911 and another ER visit was on its way. This attack was more severe and advanced than others and gave me little clue it was coming. By the time she was there, I was having a difficult time responding to questions and couldn't move my feet, legs or left arm. After the EMT's arrived, CC said she explained to the MT's not to use saline and why, and they listened! Very cool. [Saline is a trigger and/or exacerbating contributor for Hypokalemic Periodic Paralysis. If I'm given saline it will further the paralysis and increase the pain.]

Arriving at the hospital, I had lost use of my left arm and legs and now to my hips. Numb and tingling paralysis was progressing. My first two nurses were unkind and rude and we just stayed in the room waiting forever. It was almost as if they were controlling the situation from the nurse's desk. A couple hours later the shift change happened and we got an excellent nurse and we actually got to see a doctor. My wife explained the disease to the nurse and he even let her use one of the computers to bring up a website on HKPP for doctors so they could see how to administer IV potassium correctly for my condition. A few nurses got in her face, literally, and the nurse who let her use the computer actually told them to back off. He printed the directions for the IV and put it into a file for me. By the time I was given the oral potassium I couldn't see anymore and was having a hard time talking (my jaw was beginning to lock up and become stiff. After receiving oral potassium I came back around and the numbness receded and I got feeling and control back in my legs and left arm and then the only thing left was to continue to battle the pain which they were treating AFTER the new nurse got involved. They released me Monday night and gave me pain meds and a prescription for oral potassium. My wife said the doctor commented on how quickly the oral potassium worked and how we should have it at home. So feeling motivated to write and share with the number of folks whose calls I have not been able to take, I am writing from my couch, feeling less as though I've been run over by a train (Monday) and more like it was a beefed up VW Bug. Muscle spasms are still all over, sporadically, but the ribs are less sore, legs still weak but more stable.

This disease disables me physically, completely when it hits and has become harder to anticipate. The good news, I guess, is that I'm learning so much about nutrition, fast foods, "normal groceries" and restaurants nutritional guides. It is AMAZING how much food is out there that I shouldn't or cannot have due to dietary restrictions.

After I was released from the hospital, CC took me to a near-by pharmacy where my meds had been sent for filling. Still in a state of "just shoot me" I was sitting in the front seat of the van when the driver's door opened and out of the corner of my blurry eye, I realize that it is NOT my wife getting back into the van and I turn in brief panic to see...Dr. Chris Alford (the Worship Pastor from my work and subsequently my boss) sitting down in the driver's seat. I believe I shared with him some vocabulary I had learned while in High School. If I didn't share it, I can assure you I thought it. He took great advantage of my mental state and told me he was there "to have his way with me" and I apparently replied with my not having much of a choice that that time. Have you gouged out your mind's eye yet?
He then shared his concern for me and was far more the friend I needed in the moment. CC came back to the van to find him in it and she was just as surprised as I had been, but less shocked I would think.
Shortly thereafter, Chris left and we left and headed home where my Aunt and Uncle were waiting for us to arrive so that they could help get me inside. I can't walk well after an attack and being 235 and 6'2" makes it difficult for anyone helping me, especially my 12 year old daughter.
[My Aunt was at the hospital as soon as she got word I was down, as she has done far too many times before, helping CC and me to get the care needed and to give CC the opportunity to make calls or interact with medical personnel. We are so blessed to have them (my Aunt and Uncle) so close to where we live and have them as advocates for us when I have been down.]

Tuesday:
I woke up wondering which train had hit me and run me over but soon realized that the previous day had clearly been a very long one for my family and me.
The goals for the day were just to be able to walk and move in as little pain as possible.
Tuesday night I suffered another smaller attack of low potassium and this time CC has the oral potassium to use and, though I couldn't walk by myself back to our bedroom, I was able to get horizontal pretty quick and the symptoms were cut short by the potassium.

Wednesday:
I was feeling better morning-wise than I normally do after an attack and was able to function slowly.
Wedensday brought another smaller attack which was treated the same way, but the progress I was making in mobility seemed to have been lost and I was back to square one or two. I had seriously hoped to be back at work by today, if not tomorrow, but those hopes were unattainable.

Thursday:
No more attacks today, praise God! Normal day of recovery, as normal as normal can be anyway.

Friday:
Today, I watched "V is for Vendetta" which was very good. It was a nice escape from the morning's and week's realities of muscle issues and assorted pain.
After lunch time, CC suggested I go with her to pick up the kids from school so I could get out of the house. I actually got dressed in regular clothes and we went and got them from school and got some errands done and then went to try my legs out by walking through an antique shop in Roseville. It was so good to be out with my family, but I was completely wiped out when we were leaving the antique shop. Dinner and bed were next.

Saturday:
I feel better today than yesterday and almost walk "normal", but the right thigh pain is still very present. Many phone calls today, a fair amount of accomplishments as well. Hopefully it will feel like a productive day, today.

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In General:

The questions we were asking after Monday were what triggers did I miss or mess up on? Did I eat something within 72 hours of Monday morning that would have brought it on?
Turns out, "yes".
On Friday, Sunday, as well as Monday morning, I bought a grande Chai Creme Frappaccino which, incidentally, I had not checked out nutritionally. Turns out that for a Grande serving Size they are:

Amt Per Serving
Calories 510
Fat Calories 130
Total Fat (g) 15
Saturated Fat (g) 9
Trans Fat (g) 0
Cholesterol (mg) 60
Sodium (mg) 340
Total Carbs (g) 82
Fiber (g) 0
Sugars (g) 68
Protein (g) 12
Vitamin A 6%
Vitamin C 0%
Calcium 40%
Iron 2%

When I eat or DRINK something with a ratio like that, where the carbs are almost 7x the protein, I have pushed my luck. Having done it twice in 72 hours of the attacks points directly to it.
So, does that mean I cannot have a Chai Creme Frappaccino again?
...Yep, pretty much. Too risky unless I have some silly amount of protein with the drink, but even then, having that many carbs puts me at risk.

*sigh*

I was REALLY hoping that I wouldn't be down for a week like times past, but times past are the norm, unfortunately, and it is Saturday and I was just able to walk "normally" for the most part, this morning. Because of attacks this year, I have exhausted my sick time and vacation time. What an incredible hit. No one's fault, but very difficult to embrace. In particular, your prayers regarding that reality are seriously coveted.
Who would have thought this would ever happen?

More later-
peace
w