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  • Lyme Lens

On my mind...

It’s been too long since I have visited you, my old friend, my blog. A lot has been going on, that’s for sure. I survived the holidays and was doing pretty well. I took a trip to Savannah to renew my Paramedic license which was a grand accomplishment for what was such a sick Lymie in the past. I spent a week up there all by myself, going to class, staying in a hotel and actually taking care of myself for the first time in three years. Not bad eh?

I came home pretty beat up but hobbled my way through a visit from my brother and his family for Thanksgiving which was a rare treat. They have never come to Florida to see us so I really wanted to make the effort to NOT spend their entire visit in my bed. It was tough but I did the best that I could. They only stayed a couple of days and I wish that I could have been a more “exciting” Auntie to the boys but they understand that I am sick. I was just grateful that they could come because it made my mother happy.

Then January came and I hit the wall (as we like to say in my family). It means my world came crashing down physically. My body gave up the fight and I was back in the bed. So, here I am again, back in the bed 24 hours a day ~ 7 days a week since the second week of January trying to recover any modicum of strength from this disease.

For some reason, my POTS (postural orthostatic tachycardia syndrome) has decided that it doesn’t want to play nice anymore. Basically that means that my blood pressure and heart rate are all screwed up if I try to stand up for longer than ten minutes. All the blood pools to my feet, my legs and feet start to feel like they are covered in fire ants, they get all purple-ish-red (new word for me), then my head gets all woozy and my stomach starts to ache and I realize that lying down very flat will be in my best interest rather soon at that time. So I do!

Therefore, I try not to stand up very much. This has lasted three months now despite changes in meds, increased fluid intake, changes in sodium and all of the usual POTS treatments. We still have some other things to alter so we are working on it but I remain supine for now. I haven’t felt like writing much but something I read tonight hit me so hard that I had to forward it to you all so that you could read it.

I have suffered immensely during this four year journey with the inability to share how much I was internally struggling with the losses in my life and how it was affecting me. This woman has written an article that has in one page, summarized what it feels like to “fall out of society” and have to watch it continue on without you as you attempt to accept the new life you are struggling to live. As I read her words I simply lost it. Finally, I had the words to explain EXACTLY what has been in my heart for all of these months and years as I have sat here in silence struggling. I can’t thank her enough for giving me that voice.

Please read her column so you, my friends and family, can finally know what I have been feeling like for all this time. I am surely not alone if there is at least one other writer across this world who has thought enough about this emotion to put it down on paper for the world to read. I’ll try not to stay away so long next time…

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