It's been a while since my last update, insomnia keeps me awake, so what better time to update than at 4:30 in the morning when all of the sane people are in bed, right?
The holidays are upon us, and Thanksgiving has passed. We spent a quiet day together, my family and I. I made our Thanksgiving meal without the loss of a single digit, burn, or fire I'd say that in itself was a success! My amazing hubby and our wonderful kids did what they could to help me create our "feast" as Hot Rod and Princess called it. As we ate leftovers, Hot Rod declared "If we have enough leftovers to have our feast one more time it will be like the first feast!" The first Thanksgiving, was said to have taken place over three days of good eating, he retained that parcel of knowledge. Such a cutie he is!
At church we have an Angel Tree for needy families and children in our area. As you may remember from a prior post, Hot Rod and Princess wanted to give their money to people less fortunate than we are, so we took two names from the Angel Tree. Each angel has what the children wanted on it, the boy wanted a pair of tennis shoes and the girl wanted clothes. Breaks my heart that they are so in need that such young children are asking for clothing rather than a toy. Hot Rod wrote himself a list of what he wanted to get the little boy, a pair of tennis shoes and some Beyblades "But he needs to have at least 2 Beys so he can play with someone else!". So thoughtful and caring, he is. He actually wanted to write a note telling the little boy how to play Beyblade but I told him it was unnecessary as there are directions in the package. Princess had me write a list for her so she could "check mark off what is on my list" she said. She got the little girl two pair of jeans and two shirts and of course she needs some sparkle added to that, so Princess picked out a necklace for her. Whether or not the children like what gifts were purchased I will not know, but what I do know is it felt great to watch our children be able to and get excited about giving to those children who were less fortunate than us.
My wonderful hubby has to do so much around here any more, as I am simply falling apart I think. He dragged the Christmas tree up from the basement and put it together for me, plugged it in and found that several sections of lights were out on the tree. So, I began pulling and testing lights until I found enough blown lights and replaced them with new lights that the tree is now properly lit. Hubby put the angel on the top, I strung the beads and put the ribbon on, as well as the glass ornaments then the kids finished decorating the tree. It was a group effort getting the tree up and what little decorations we have out. I have yet to finish wrapping presents but I did get the kids' presents bought.
We went to only two stores, Sam's Club and Toys R Us. My amazing hubby and our wonderful children gladly pushed me around in a wheelchair so I could shop. I was embarrassed at first, needing a wheelchair. But by the end of the trip, not only had I made it but my head hadn't completely detached from my neck and rolled onto the floor. It was touch and go there for a minute when I wasn't sure if it was going to fall off or just dangle, but dangle it did and I'm here to type this. In all seriousness I just get so weak any more, I can hardly hold myself upright on the bleachers watching Hot Rod play basketball, and by the time it's over I am a pile of jello from trying to hold myself upright. It's ridiculous, frustrating, and pathetic! I'm praying I get the presents wrapped in the next two weeks, and the presents for the rest of our family purchased before Christmas!
I'm still waiting for the miracle of remission, maybe I'm not holding my mouth right, squinting my eyes just right, taking the right combo of meds or something because I don't feel I'm getting much better. Oh yes, poor pitiful me, waaah waaah waaah! I can't help it. I try, really I do, to not let this get to me. To find the humor in all of this, but some days it's so very, very hard, other days it seems impossible. At least I'm alive! Right? That's what I tell myself, at least I'm still breathing. But sometimes breathing gets scary. So, between my whining I'll tell you what I think was hilarious. Try imagining this as I tell the story of how I scared the crap out of my infusion nurse.
My infusions are long, they last at least four hours and have been going as long as six. That's a long time to sit and be hooked up to tubes and pumps, I.V. poles and tethered to a chair - or so it seems. Bathroom visits are inevitable as you are supposed to drink more before, during and after the infusion as well as the bags of fluids the nurses run with the infusion. So I like to have a snack too. Last time it was Spree.
Chewy Spree candies, pure sugar, chocked full of artificial dyes and flavorings, nothing good for you at all in them, but they taste pretty good. So, I got me a small bag of them when we were at the store, specifically for my infusion. I'm sitting here minding my business, nurse is sitting on the couch, we're watching the Twilight Saga - I'm not sure which movie we were on at the time and it happened.
I knew it was going to, the warning signs were there but I kept eating those tart, yet sweet, chewy candies anyway. When suddenly, it happened! *Cough* Uh oh *Cough...Cough* Oh crap I can't breathe *Cough, Cough, COUGH* I can't stop coughing, that nurse she jumps up, runs over to me, flailing her arms in the air, "What's wrong, what's wrong is it the medicine?!" She's freaking out and ready to call 911, Hubby is sitting at his desk, calming her down, "Oh it's okay, she's okay this happens." Nice and calmly he tells her that, she's standing over me, turned the pump off, I'm hacking up a spree, a lung, and I don't know maybe a little intestine is coming out too. I'm bright red, and still coughing, nodding my head trying to let her know I'm okay. Breathing isn't happening, start having trouble breathing but the coughing stops.
Finally, I'm breathing again, coughing between deep-ish intakes of air, I smile, thinking "Wow, I just scared the heck out of her, she's all ready to call 911, had no idea what to do for me!" That's pretty funny! Then after she's settled down enough, I let her know we can keep on with the infusion, I got choked on the candy, it happens, I'm fine. She says, "See I can move fast when I need to." *pause* wonder if I'm supposed to go give her a cookie now? Then she walks past me, pats my leg and says "It's okay honey, I still love you." Like her 'love' for me was supposed to miraculously make everything okay. She's not my favorite nurse, and she knows this, but I think she felt the need to say something reassuring and that's all she could come up with. So now, Hubby walks past me, or when I choke and says "It's okay honey, I still love you!" Funny!
Wednesday I see my neurologist. I'm not sure why but without seeing me, he has changed the number of days I get infusions from 5 to 3. I'm frustrated by this. I am not doing well, I'm just getting by yet without seeing me he has deemed me to be well enough to lower my infusion days...not good. Let's hope that he has a valid reason, another plan for me, something. I need some hope here. I need to get better and taking away something that gives me a little help, a little bit of hope in this retched disease, well that's not a good thing. I feel like we have to fight for everything, for each step forward I feel it's like walking through thick mud and sometimes even quicksand. I'm barely treading water some days and have wondered on more than one occasion lately "Is this it? Is this the start of a crisis? Do I need to go to the hospital or can I wait it out?" So far, I've been able to wait it out, hospitals scare me as ours seem to know nothing of MG and there is such a long list of meds we myasthenics cannot take I risk staying home. Staying here to be with my babies, with my husband, where I shouldn't have wonder "Do I need to go to the hospital?" Princess is always worried I'm going to have to go back to the hospital, Hot Rod is too, but he refuses to talk about it. I try to reassure them, I'm doing all I can do to get better. And I am. And I hope I do. We all hope I do...get better that is.
Tonight's Blog has been brought to you by, insomnia, chewy spree, and the song Hope For The Hopeless by Fine Frenzy. Now, I shall venture off to LaLaLand and hope for sleep, with dreams of chewy spree, rainbows and lollipops with songs of hope for a better tomorrow! Goodnight Ya'll!
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