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Once again, I find myself wanting to post long after I should be asleep.

I know that I have been conspicuously absent from communications over the last several days if not several weeks and I'm sorry about that. In terms of what this blog was originally created for, it was/is to record my blessings and my trials, while living with this infuriating disease.

This past Thursday night, while with CC and the kids at Missy's karate class, an attack started in very quickly and we had to to leave the dojo while I felt I could still walk; very awkward and embarrassing. I'm not certain of how long the attack actually lasted, but I believe it lasted for almost an hour, where normally my attacks (now) usually last a few minutes, and then the recovery can take hours or days.

CC and Missy managed to literally carry me into the house because I was unable to even assist in balance or motion. They also got me up stairs and into bed in the same manner. I woke up in the darkness of the morning, aware that I couldn't move my hips, legs or feet. CC got up and got me some more potassium and then I fell back to sleep in the same state. The next morning, I was barely able to get from the bedroom to the bathroom and back without being carried and I did not make it downstairs at any point on Friday. At one point, while I was checking e-mail on my computer up stairs, another attack happened, with it being my abdomen, chest and leg muscles paying the price this time; back to the bed I went and back on oxygen. When I get the attacks where I can't breathe very well, even though those attacks are not uncommon, those scare me the most, which is what the attack was in my office. 

Yesterday, Saturday, I spent the morning in bed and then, with the use of two canes, was able to get downstairs and sit outside in my motorized chair while CC and Josh worked on the front yard. At least I got to be in the Sun for a small block of time, but the hip, leg and foot pain prevented me from doing much of any walking. In the afternoon, just after eating my lunch while watching TV with the kids in the living room, I paralyzed again. A bigger difference with this attack was that my eyes were able to be open and controllable, for the most part, but I still wasn't  able to speak.

It has been a really rough few days and I know that each of us here would covet any prayers that you would be able to offer on our behalf. In particular, I really want our family to be able to go to church tomorrow morning and I don't want this disease to prevent that from happening.

I always say that I will get more written and then I don't, but please know that it is something I want to do.

Praying for peace and restoration and protection --

w

 

Peace-

-w

 

 

 

LiveJournal Tags: Hypo,kypo,hyper,Hypokalemic,Hyperkalemic,periodic paralysis,Hypokalemic periodic paralysis,hyperkalemic periodic paralysis,sore muscles,muscle pain,myotonia,myclonic jerks,paralysis,spasms,rare,Mayo pain clinic,profuse sweating,unable to walk,motorized wheelchair,treatment,neuromuscular disease,potassium,saline,insulin

Regina and Joe getting married!!

Regina getting married-

We have an opportunity...

Greetings all-

This is a quick post to ask those reading this to follow the link provided and cast a vote for "Rare Diseases".  There are currently 3 days left to account for any votes, so whatever can be done in this period of time will prove differential.  I read today that "Rare Diseases" is currently in sixth place on the list, and if it moves down the list, then financial resources may not be made available for future research and studies.
If you've ever wondered how you might be able to positively impact my life, even though we may not be near each other, I think this is one way that could be very helpful.
There are currently 2,732 votes.

The site asks for your name and an email address and to create a password; that's it.  They will email you a confirmation link and register your vote.

Again, the link is:

http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease

Thanks for considering it-
peace-
w