Monday, April 22, 2013
A Request, Apology, and Thanks
With Hypokalemic Periodic Paralysis, salt, sugar, and many other common substances are potentially dangerous. Since there is no way to avoid them completely, life is a roller coaster and every day is a challenge to find the right balance, which is constantly changing. The best HKPP patients can do is avoid these triggers whenever possible, and face them when we have no choice. The list is long...you wouldn't believe how extensive it is. It would be fantastic to be "normal" enough to not have to nit-pick about every little detail of every little thing I come into contact with, but most who live with this disease are required to treat triggers as allergies for the sake of survival and quality of life.
That said, when someone presents a suggestion to me (product, advice, etc) and my response isn't what you wanted it to be, I assure you there is a valid reason for it. It is not meant to offend you nor make excuses, and I ask that you try to respect me enough to take my word for it. You can say you're knowledgeable about the condition and you can think you're more intelligent than me...that's perfectly fine...but the fact of the matter is that I know my body more than anyone else, and I'm not going to allow something or someone to do me harm no matter how precious and pure the intentions are. I welcome all input, suggestions, and questions...don't ever hesitate to make them known. I am a nice person, and I don't bite. I promise to respond in truth, with respect, even if it's in disagreement, and thank you for your consideration. Because I sincerely appreciate it.
I chose a long time ago to make my journey public because I need to bring awareness to this rare disease...certainly not just for my sake, but for others too. People have found information about HKPP and learned about the condition because of my public rambling coming up in searches. People have thanked me for my honesty because it makes them feel less alone. People have asked me to continue to share my struggle because it encourages them to pray and be grateful for their health. If anything I say helps even one person, I dare to say the rants are worth it.
I'll be as mindful as my tired brain can be and do my best to spare everyone any major drama or TMI, but otherwise...this is my life right now. Take me or leave me. If you are a new reader, I welcome you and I apologize if I have scared or upset you with my posts. I don't talk about these things to create anxiety in people, but I have friends who love me and truly want to know what's going on. Some even take time out of their day to pray for me, and that matters. I personally think it keeps me alive.
To those who care and have been here for me, thank you will never be enough. I do not take you for granted, even when I'm silent. What I would give to be able to repay the kindness...words cannot express. Thanks for putting up with me.
(Originally posted on Facebook)