is the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.
Thursday, May 28, 2009
A Different Kind of Struggle
First off, I need prayers for my dear friend's baby, Chelsea. She's been in the hospital since Saturday and they can't figure out what is wrong with her. She is Chloe's little 6-month-old friend. We are worried for our little friend and hope you'll all add her to your thoughts and prayers!
So, I'm not going to go on and on about this, but I wanted to just bring y'all up to speed on why I'm not sending updates lately. It's me this time. This annoying shell of a body of mine seems to have just given up lately. I'm not sure exactly what is going on. We (as in my docs and me) have some theories, but we won't know if we have the right answers until we see if the meds work. But basically we think that my adrenal system has just given up from all the stress and is therefor creating havoc with my other physical problems. I have an under-active thyroid that since Chloe's birth has been out of whack and not so easy to regulate. I also a borderline iron level and really low D. I have fibromyalgia, too and although I don't have much pain these days I am OVERWHELMED by exhaustion and malaise. I need about 14 hours of sleep AND coffee to actually feel awake for a few hours a day. It's the kind of tired where I literally can NOT stay awake. I find myself falling asleep while Chloe spends a few minutes in her bouncer or certainly when she naps. I'm having to cancel appointments and playdates and forget keeping up with my house. A good day means I make it from 6am-8pm without napping. But I don't have many of those days. As you can imagine, it feels impossible right now to manage two young children. I am desperate and sad and hoping that some day soon my meds and slew of supplements will start to make a difference. And believe me, I've tried the ol' "positive mental attitude". . . "today's going to be a good day", but it's not in my head and it doesn't matter how I WANT to feel. I'm not sitting around moping because I don't feel like doing anything. For those of you who know me I am anything but lazy and have lists upon lists of things I'm all fired up to get done. But with this, whatever it is, I'm too tired to even make lists. So anyway, I'm just writing so everyone can understand where I've gone. This blog is about our lives with Chloe and NOT about my current miserable health, so I may need to take a break from blogging until I'm back on my feet again. I'll take some positive thoughts and prayers and mojo so that I can get back to taking care of my kids and family! That's the most important thing to me.
okay, time to take Chloe to the doctor. She's been fighting a bad cold but as always being a true fighter! She's got a constant cough, but the smiles remain. We had two choking episodes this morning, but I was able to talk her through the panic. I wish you could see the way she looks at me with her sweet eyes during those episodes. She has so much trust in me. It's inspiring.
Subscribe to:
Post Comments (Atom)
Sending some great mojo your way, hopefully things will get figured out soon. I hate it when you know you have things to do but you have absolutely no energy. Hugs from me and Jax.
ReplyDeleteThanks Lacey. Hugs are good. :)
ReplyDelete