Sunday was and went

 

Missy didn’t sleep good Saturday night so we had her stay home and Joshy went with CC and me to 11:15 service at Capitol Christian enter.  I am able to tune into Pastor Cole’s messages and style of conversed delivery; it just works for me, as well as for CC.  Pastor Cole was particularly passionate this morning and there was much to be learned for those who have ears to hears…

Right as we got to about 12:30 PM, I became aware that I could not move my feet, toes, legs or even knees, and subsequently realized that I had been holding my breath for long periods of time, something I tend to do subconsciously when I am experiencing unrelenting pain.  Right about then, CC leaned over to where we could see one another and we began to exit successfully.

Getting into the van was a little bit of a challenge but with a little cooperation from my end, it went smoothly as was feasible.  During the ride home I was noticing a slow increase in symptom, though I had already taken my liquid Potassium (Liquid K+).

Nothing else really transpired from the hit.

Eyes are 2 tired 2 continue…….

 

Difficulties

 

It’s been quite a while since I posted and, unfortunately, that has been due to daily attacks for the past 12 or so days.  I did get a break for about 48 hours this past week on Wednesday and Thursday, but Friday’s attack was savage and hit me while I was home alone, again.  This hit was harder because both my legs began to experience muscle spasms AND cramping simultaneously, confining me to my black chair.  CC was at Joshy’s school when it hit and she came home in a manner of minutes, but the nastiness had locked on and began to claim other muscle groups as I began to battle the fear of not knowing what was coming next and knowing I was by myself and that Annie was not crated which would have been problematic had I called 911.  The attack lasted for 45 minutes to an hour; brutal cramping in my calves and abdomen , spasms eventually everywhere else and lockjaw to top it off.  It’s been a very long time since an attack brought tears…

Today I spent in bed for nearly the whole day and could only walk with the use of the walker, and even that was a snail’s pace.  I demanded of myself to go and up and down the stairs a few times in order to push oxygen back into the muscles, knowing full well that it would be painful and slow, but I did it…granted, a couple times I needed CC under one arm to make, but I STILL made it.

I have NO idea what set it off, no clue at all.  Those attacks are the ones I fear the most, I guess, because when the attack begins, I normally run my immediate history back through my mind and can normally see the trigger in hind sight, but with these attacks, it becomes an endless mental search that eventually exhausts me from the inside out.

You know, now that I’m thinking about it, those of you who read this via Facebook should know that these posts or “notes” are coming in directly from my blog entries at http://theaudiopilotsblog.blogspot.com

I’m considering closing the link between my blog and Facebook because much of what I’m sharing is exceptionally personal and Facebook by design, is not and I’m feeling like I’m sharing too much to too many people in such a general manner.  I’m thinking that if anyone wants to read the blog that they can simply go to the blog and check it out instead of me linking it to Facebook and leaving it “out in the open”, so to speak, for the casual Facebook reader.  My intention is to use this post as an open invitation to anyone who is interested in my life or my terminal joust with this rare disease, to go to my blog, http://theaudiopilotsblog.blogspot.com and read all you want and have access to all the previous blog entries as well some pics that are not on my Facebook profile.

Well, that’s it for now.  Praying for a better tomorrow/today (Sunday).  peace-

Long harsh attack this AM.

Long harsh attack this AM. have been down for the rest of the day...

Sunday, September 13 Re-cap…

 

I'm impressed with myself that I'm writing this long before the wee hours of the following morning... I hope this font doesn't bother you; I'm liking it at the moment.

At exactly 1:30 p.m. this afternoon 15 years ago, Melissa Mae Odum was born in Redwood City, California. Her day today was celebrated one day early with having four of her close girlfriends surprise her for an overnight stay and celebration here at our house. I guess the only significant bummer from yesterday as it would pertain directly to Missy, was that she had to run 10 miles that morning so she was very tired come the afternoon and a bit more low-key and less hyper than she might have been otherwise. Unknown amounts of caffeine later in the day, found her still awake this morning around 5 AM, the final of the four of them to fall sleep. She then slept until 10-ish and was up and going before I was (I woke up at 11:48 AM!).  The girls decided that they wanted to go and see “G-force” at a 1:50 PM showing, so we all loaded up, including my motorized chair, and we headed out for an afternoon at the movies. I have learned from the past that sometimes going to the movies can be problematic for me, whether it's because of the stress in the movie or because of the temperature and climate change; going from an air-conditioned building out into hundred-plus degree heat. Fortunately, today's movie was not very stressful (I mean, we're talking guinea pigs here) and on exiting the theater, there was literally no difference in temperature from indoor to outdoor, so I escaped my known two primary “going to the movies“ issues. I did learn, unfortunately, that there is a third issue for me to consider, but that would not just be from going to a movie per se, it would apply to any period of time where I would be seated for more than an hour at a time in the chair. The third issue? Do not begin to assertively stretch immediately following a long, seated period of time.  Exhibit A.: Before getting into the van, following our exit from the movie theater, I chose to do some leg and abdomen stretches before getting into the van; I was in error. Very shortly after having started the stretching of my calves and my abdomen, what first began as flutters quickly turned into spasms across my waist and my chest; the process had begun. CC and Missy helped get the liquid potassium into me and Joshua stood beside me holding my hand and encouraging me to squeeze his hand as I needed to in order to release the pain of what was going on. It did not take long for my body to go into full paralysis which was very awkward for Missy's guests who have joined us to go to the movies and had to watch all of this unfold. As we began to drive and take the girls home, Missy became my support; holding my head and my shoulders against the seat so that I would not end up ricocheting around in the front seat, during turns and stops and starts. I became infuriated with myself that this had happened on her birthday, in front of her friends, and as a result, most of the car ride home she spent in tears, resting her head against mine and quietly reminding me and encouraging me to breathe deeply and not to panic. I could do nothing to reassure her or comfort her or stop her tears until my body settled down after the potassium had fully gotten into my system, which was after the final girl was dropped off. Needless to say, it made for a very quiet ride home.
*Sigh*

CC and Missy helped me get into the house and into my black chair where I stayed for the rest of the evening while the three of them went to a roadhouse steak restaurant here in town for her birth day dinner. It's just not how I wanted the day to go or end up but there's nothing I can do to get it back or to change it and moving on is the only option. Missy, like her father, mother and brother, cherishes family and family time and, once again, thanks to a debilitating disease, we are forced to adapt our intents and our desires to the realities of minute to minute -- day to day life as filtered by HKPP. Some elements of that look a lot like the beginnings of a pity party and, perhaps inside, maybe that party is actually going on but in an underground sense; something that I need to battle and excuse myself from on my own, but there is a truth to it as well and that is that perhaps I need to be more considerate of others and my family in terms of participating or becoming involved in functions that may radically change if I suffer an attack, and by radically change I mean that some, most or all involved are negatively affected by my attack.

Tomorrow is Monday, a new day and the day that I can and may rest and recover; all I have to do is choose to do it, and if I am at all honest with myself and most all of you, I'll have to confess that choosing to rest and recover just isn't as easy as it sounds or as I want to be sometimes.

As I remember whispering to Missy while we were driving home," I'll be okay; I will get better, you'll see..."

From Tuesday through Saturday

It seems that I've gotten caught up in the new speech recognition software and have blown about 45 minutes just playing around. Sigh.

Today is a new day; in its newness, one can find hope and encouragement and even refreshment should they choose to seek it. I must confess that having gone nearly 6 days straight with attacks each day, and yesterday having two attacks in one day, I'm finding it difficult to put the energy into searching for anything at the moment. That having been said, what I don't want this entry to be is a pity party or a lamenting how life can suck at times. What I do want this to be, however, is a general recounting of the last five days or so. I believe my last entry into the blog came Thursday night following a hellish day. Anytime you see a blog entry that's only got a couple lines of writing in it then I have sent that posting from my cell phone, likely either from my bed or my black chair downstairs. Most often, I use my cell phone to post a blog entry when I do not have the strength to get up and walk to the computer.

So where are we? Yesterday was Saturday, the day before my daughter’s 15th birthday, and the day came with two smaller sized hits, both of which landed me in the black chair with oxygen and the latter of the two hits found me leaning my back against the wall with my knees locked in an attempt to keep from falling and my wife in front of me with her arms under my arms, holding me up until Missy could come downstairs and help. I don't know what triggered either one of these hits, but I did have a gut feeling when I woke up that I was going to take a hit at some point during the day; under these circumstances, I do not enjoy being right other than to take confidence in my gut feelings. One attack happened in the midmorning and the second attack happened in the early afternoon. Though it has nothing to do with me, I'm very proud to share that Missy ran 10 miles today in an effort to raise money for her school cross country uniform and she ran most of the way but he regardless of speed, she finished the race on her own and I could not be more proud of her. My heart goes out and thanks to those of you that were able to support her in her pledge of running the 10 miles; thank you.

The day before yesterday, Friday, Missy had a track meet in Oroville and was gone for most the whole day. Upon returning to the school around 7:30 that night, Joshy, CC and I picked her up from school and drove to her current favorite restaurant, Denny's for an informal, celebratory dinner. By the time it was ready for us to order, I had read through their nutrition guide front to back and realized that there was nearly nothing I could eat; something I had suspected but did not know for sure. I went for the safest dish that we could think of; planes scrambled eggs and playing hashbrowns. All of us were pretty hungry, me included, so when the food came I tried a couple bites and waited for a minute or two to see if I would have any immediate reaction. Seeing no reaction initially, it did not take me long to finish off my plate of food, but, right about the point when the three of them were finished with their dinners, I was having a difficult time thinking and speaking.  Most of us with periodic paralysis refer to this experience as “brain fog”, a typical precursor to an attack. If I recall correctly, both kids helped me get out to the car while CC took care of paying the bill and then we drove home and CC and Missy help me get up the stairs and into bed. I do remember that my job was locked and I was panicking because I could not open it myself, but CC applied in the end downward pressure at the base of my jaw which released my tongue and clenched jaw. After a cocktail of liquid potassium and apple juice, along with my nighttime meds, I waited for the pain meds to kick in and hoped that I would escape my body's retribution in the morning. No such luck. I realized when I woke up Saturday morning that my jaw was very, very sore and somewhat puffy on both sides; I figured out fairly quickly how to be able to maximize my verbal communications with minimizing my mouth and jaw movements. Yogurt was for breakfast.

Thursday's attack was ugly. CC and I were on our way to our PT appointment that morning and on our way there, CC, along with the pickup truck behind us, decided to change into the same lane at the same time. Our vehicles never touched each other, praise the Lord, but there was some swerving and screeching of truck tires and my body locked up. CC told me that after we had arrived in the parking lot for PT, she gave me some liquid potassium and shortly thereafter Mark came out with one of their rolling office chairs and the two of them got me from the van into the building, up the elevator and into their office and then into one of their private rooms. I have a vague recollection of the symptoms mellowing out until my chest got cold at one point and the chills began, followed by more spasms, cramps and muscle locks. I don't know how long this lasted nor do I remember much of anything after that. I understand that they got it back out to the car the same way they have brought me in and that when I was still in the office, she gave me another dose of liquid potassium which eventually mellowed out spasms and cramps. I spent the rest of the day and evening in bed and I'm not able to remember much else. Obviously, I did send from my cell phone while I was in bed; good for me.

Wednesday was Missy's Back-To-School Night and, though I have a small hit in the afternoon, the evening came out fine while we were at the high school. I am so very thankful that nothing happened to me while we were there: that would've been terribly awkward for Missy and I would've felt like trash. A borderline, small hit began on our way home from the Back-To-School Night but it did not fully manifest and I was able to get away with just taking my regular medications going to bed.

I'm kind of fuzzy on Tuesday night’s hit, but I do recall talking with CC about it and we both felt that it was a combination of three things; emotional stress, higher sodium count dinner and being physically wiped out. Unfortunately, any one of these three can be a trigger in and of itself, so after-the-fact, it was not too hard to figure out.

Okay, it's 3:17 AM and I really need to stop and go to bed now. Once again, I am so grateful for this software (may God thoroughly bless you Greg) because without it I would not have been able to have posted this blog. I also just thought about this; I can't remember if I included this in a previous blog, but this software also played a critical role in my getting help a week ago Thursday, I believe. My body had gone into nearly full paralysis during the time which I was posting to the blog and that blog entry actually depicted what was happening to me before most of the rest of the things went South. Because I still had the headset mic on my head, I was able to use the software and my right index finger to be able to send two e-mail text message to CC, for her to come home from a coffee meeting she was having with one of her good friends, because the symptoms were getting worse and the attack had begun. For whatever reason, I did not have my cell phone on me and thus was not able to speed dial her, which I have done in the past. Had it not been for the software, things could have been quite bad. My buddy Scott Shuford called tonight and he suggested that I share this experience with the makers of Dragon NaturallySpeaking as a testimonial; as per usual, I think he has a very good idea.
Okay, it's 3:26 AM now. I'm done

 

Hard day: attack on the

Hard day: attack on the way to PT. Lasted an hour. high price today...will see about tomorrow.

Another hit 2night after dinner.

Another hit 2night after dinner. Not sure why this time. It's looking like a very long weekend. Wiped. Done 4 now

Bad attack followed my last

Bad attack followed my last post but I was able to voice a text msg to CC and she came 2 my rescue. Tuff & hard night.
:o(

Realizations

To begin with it's worth my stating that I'm using my headset mic in order to communicate for right now. I don't know that I'll be in a position to do my normal editing before posting this, so hopefully all of this comes through clearly. That being said, I'll describe how I'm feeling at the moment in order to be able to look back on this invalidation and/or understanding; when I woke up this morning, the sheets as well as I were soaked sweat and my mind was unsettled the point that I was wondering if an attack was looming only moments away or not. As it turned out, no attack took place though I have experienced a number of normal precursors to an attack. As I am dictating this right now, I'm having to concentrate very hard to keep my words and my thoughts clear and cohesive; it is not coming easy to me right now where it did all of 15 or 20 minutes ago. In the last 5 to 10 minutes I went through another profuse sweating, from the top of my head to my feet. Along with that, I have lost most all of my strength and even opening my eyes see is a challenge. My potassium and other medicines are all downstairs while I am upstairs and I am realizing that this is problematic at this point; I'm not quite sure how to remedy this at the moment. I'm short of breath taking concentration and energy to do and that is typical when I experience the heavy sweating this isn't meant to alarm anyone because I'm sure that things will turn out like they normally do and be fine, but it is for my own validation and record of the reality of the symptoms.

I have other thoughts that I want to share but I don't think now is the time so perhaps I will do that later today. Time to sign off. I'll be back later.

I found Todd Borger's blog!

The link below will take you to Todd Borger's blog. Todd was a good friend and former bandmate of Scott Rose and mine (he was/is? a drummer/writer).
Beware though, reading his blog will break your heart; in it he shares his rememberences of Anna, his 8 year old daughter who was tragically killed last May 7 while biking with her mother.
It is so, so hard to read of another father's pain and suffering, being a father myself.

My heart breaks for you Todd. Peace.

http://toddborger.wordpress.com/


-w

Remembering “Heroes” and Other Currents…

 

 

Well, once again I find myself in the position of having to recall several days worth of activities as opposed to simply recalling one day at a time, because I would have been making daily or nightly blog entries.  Needless to say, it's more than annoying from two main standpoints; the first standpoint is that my memory has proven to be unreliable over the past 2 1/2 years or so, due to one of the side effects of one of the main pain medication’ that I take. The second reason that it is frustrating is because I want to use this blog as a daily event and record of living with HKPP, and I know that if I do not an accurate recording of my daily living and struggles with this disease then there is less for me to learn in the long run.

Speaking of memory issues, I missed my physical therapy appointment this morning because I did not recall receiving a phone call towards the end of last week, letting me know that there was a change in location for my appointment this morning. I'm pretty sure that most who read this know and remember that I am not allowed to drive anymore (and that we only have one vehicle which CC uses for all transportations and to get herself to and from work each day), and being that I'm not allowed to drive it anymore, I need to rely on others to take time out of their days to help me get to and from appointments or events that happened during the time frame that CC is unavailable to drive me to. As was the case last Tuesday, this morning my cousin Chris gave up a good portion of his morning to come and pick me up and take me to my physical therapy appointment and the end result was that I asked him to take me to the incorrect location because I did not remember the phone call from the clinic alerting me to the change in scheduled locations. Chris did seem very cool about the snafu and even offered to take me tomorrow morning to a make-up appointment from missing today’s.

I have not been sleeping well over the past several nights and I believe that is the reason why I have either been napping or experiencing crashes each day in the afternoon to early evening hours I'm forcing myself to get up in the mornings and make sure that Josh gets off to school, which is a no-brainer and a good thing to do, but the issue is that I'm not getting to sleep in a timely manner to allow my body time enough to rejuvenate and rest from the previous days activities and waking hours; we as a family, me specifically, need to be going to bed earlier on more of a regular basis to fix the issue at hand.

As I'm writing right now, I'm using my headset microphone to dictate this blog entry and more often than not, I close my eyes and somewhat lean forward, resting against the desk as I think of what it is that I want to say and communicate. This, in another itself, is not really a problem.  However, when you're tired and you lean against something and have your eyes closed, the likelihood of falling asleep is greatly increased... at least in my case it is.

About a week ago, CC and Missy coerced me into watching the first several episodes of the TV series “Heroes”, the final episode of the fifth disc of the first season's episodes, I watched late yesterday morning. Each episode is an absolute cliffhanger and, in my opinion, is superbly directed and shot and includes an excellent cast of characters and actors. I'll come back to why this is relevant in a minute or two…

Yesterday came and went without an attack; a fact that I am blessed by. To that end, I believe it has been several days now since my last attack which I think was a week ago this past weekend. Sunday was a good day in a productive day, though we all slept in to some extent and once again did not make it to church. I am more than frustrated with myself over not making attending church a high enough priority, so much so, that would out rank sleeping in. Granted, there are obviously other factors that weigh in on going to church on a Sunday morning, but I know that I have not been much of a leader in terms of getting my family into church on a weekly basis. Typically, our weekends are spent doing household pick-up and chores along with different yard projects unless the heat outside is prohibiting, but this past weekend was primarily spent indoors with Saturday being a marathon video/movie day for  me, Missy and CC, while Joshua either was on the Xbox or was playing on my computer. We watched several episodes of “Heroes”on Saturday and a few more on Sunday; I think I began watching the series on either Thursday night or Friday night, along with CC and Missy who both wanted to re-watch the beginning episodes and see if they would notice anything that they may have missed the first time they saw them. I'm looking forward to getting caught up with them in terms of where they are in the series, but I am not anxious to watch the series while it is on TV because the level of stress in each episode combined with the lack of resolution at the end of each episode could certainly prove to be a contributing trigger to an attack for me; I would rather watch the series on DVD where I have better control and easier access to finishing storylines and pausing at stressful points than if I were to just be watching the show on TV.

No, I have not read anything about the possibility of their actually being a black widow *season*, but if there is such a thing,, it is now. As father of this family, it is my duty and marital responsibility to extinguish or neutralize any and all spiders that are visible or indicated. Sunday night, before finally going up stairs and going to bed, I did a thorough walk of our back patio, yard, retaining wall and garden with a can of spider insecticide and managed to dispatch well over two dozen black widows; from the very small immature ones to the largest which was nearly the size of a dime, not including its leg span. Then yesterday, I went throughout the entire yard and completely removed all spider webs that I could reach and find in order to better learn whether or not I was successful in completely eradicating the arachnids or not. Not all spiders were black widows though over two dozen or; there were some spiders that showed the same type of body shape and size but did not have a red hourglass on their belly. Unfortunately for them, as far as I am concerned, there is “guilt by association”and they are no more.

On a completely different topic it is worth noting that even though I have pushed some of my dietary boundaries within the past week, they're still have been no attacks, fortunately. I find myself, like most folks I know, experiencing cravings for different types of tastes for foods so from that standpoint, it's probably a good thing but I don't have my license and cannot drive because cravings can be very difficult to deal with at least as far as I am concerned CC was noting that last night, after eating dinner that the likely reason that I was not feeling very well was because I had some boxed, prepared pasta which is more often than not, a straightforward no-no for people with HKPP; a fairly straightforward cause and effect, if you will.

It feels and seems like my creativity has run shallow again and that I have very little to contribute, creatively speaking . I have half-done musical projects and musical ideas that are just sitting, waiting to be addressed and/or finished. Bleh.

Both kids are doing well in school and enjoying their classes and their friends and, from all that I can tell, both are doing well being in separate schools which is a first for them. During the summer Missy joined her high school's cross country team and she has been practicing and learning through part of the summer what all of that entails. This past Friday was the school’s first cross country meet which took place in Lodi. Missy and her team were taken via bus to the load I meet where she competed for the first time. Her mom and I are so very proud of her, it's beyond words. It was a huge step for her (not to mention a slightly large step of stress for her father who worries about her traveling to and from field trips and other excursions)

Well, my brain feels like it is emptying out of the different things that I wanted to share. I do think its important to relate that, all things considered, which includes the past nearly 3 years, our management of this disease is currently giving me the highest degree of normalcy that I have had since my diagnosis. By no means am I anywhere near what I would have termed to be normal over three years ago, but it has been a very long time since I have been taken to an ER via family or ambulance and nearly all attacks are manageable without the need of medical assistance. I do have some other random thoughts as they pertain to daily life but I am more tired than I am inspired at this point. It is time to call it for now.

Peace