Yep. Regrouping is pretty much it. You know, when what you knew was happening and then be told that by the specialist…by two specialists. Funny thing is when that happens and they don’t see it, I think why on earth do I even come? Is it this important for me to come here and have everything they see written down somewhere. So pondering my choices….ha! Imitially I saw it more of a “Okay- tell me what to do to slow this down or make it improved and  I am on board.” Years down the road, I realise side effects, complications all take their toll and sometimes the toll is worse than the illness. And now often I just plain wonder.  Increasing my stretching, my yoga alot to try to slow down the tightening. WHen you tendons and muscles say “oh let’s contract here! Eventually we can just keep it that way.” It is a formidadble force. Hurts like hell when the battle is on.  Not being certain when enough becomes too much. It’s an ever sliding scale that everyone who has this knows the balancing act…never knowing when the imbalance will sweep you right off.

 But I am feeling good about it and compensating for those things I don’t have -hahahaha like a pool. Because I have something better. I have my imagination. I was a nurse…I know how to impprovise. I am done feeeling like if I were here or if I had that. It’s time to live my beliefs.

SImple steps initially will make a difference. I can’t believe the shock when I try things I did before just a few years before with ease that now say. “HA what are you kidding? Have you met your body now?” Right around then the conversation between my body and my brain shifts. I have always been good at shutting up my brain…just too often the wrong part of it. Now i will dance in this part of it. My movements are clumsy and awkward…but I will remember those moments of grace I once knew, the flow, the muscle memory that brought the next move easily into another with no strain and hesitation. Maybe they are gone and lost. Just locked within the part of my brain that says I can only look out of the eyes of reality of what it is now. Oh I know what’s here now. But that doesn’t mean I can’t remember with love those things that once were…things that may one day improve surprizingly- even if only for a day or an hour.

Ok better plan of what I am doing. working out for strength and mobility but with the imbalance will use the wc for safety, for endurance, for safety in mobility. And I will be thankful for that and use it to my advantage. I will practice that voice app Kenny bought me as my fingers fight to want to curl uiup and  tremor on the keyboard. I will practice my speech while practing the app. And I will take care to drink those semi thicker things to drink for nourishment. And maybe not get aspiration pnuemonia and if I do breathe in obviously way too much I will call for meds and resp treatment.

I can and will do this. The fact that this has inched ahead does not mean I have to just watch it from the spectator seats. I always did prefer to be in the game. SO watch out ms… I am gonna surprize you!

Thank you Kids for your calls and messages and texts. Thank you Kenny for the many calls. Thank you for making the adustments here so I wouldn’t slam into doorways on the WC and thank you for laughing and being understanding when it is obvious that someone who has optic nerve loss and thinned macula is entertaining to watch in a motorized WC. For the massage chair from heaven, thank you. FOr the big white keyboard and screen that help , thank you kenny. For always making the house wonderfully fit for company for the times it does happen, thank you, Kenny, thank you for believing in me and helping me take the next giant steps that I thrust myself into with as much exuberance as I am so impressed.

Thank you my friends and family…for those of you who know what this is I go through and hear what’s in my voice. For your wounds, I pray for your healing, for your pain to dissipate.



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