Friday, June 12, 2015

Orthotics!

I got them!!
I got them in January and have been trying to get used to them. It's been a challenge. But I can walk!

Saturday, January 31, 2015

My resolve has slipped...

I know I've written more about my migraines than my AMN, but I am used to my horrible affliction, and the migraines come and go. The stupid headaches are my Achilles heel, the great flattener of my life. I've had 2 puking migraines this week and for the 2 days after, I've been so sore and miserable. It seems like it's taking my body longer and longer after each headache to recover, and having 2 nasty ones in a row has been hell.

So, as the title of the post suggests, I've unfortunately let myself think that I wish I was normal and healthy. I get told frequently that I have a great attitude about life in the face of my health problems, and I almost always do. I have my weaknesses, and this week I've gone over that tipping point and gone to the dark side. What if I didn't have AMN, depression, or migraines? What if I could run and jump and skip and ride a bike? What if I didn't have chronic pain and get tired easily? What is life without migraine like? I've never known what a normal life is like. I don't say that for pity, it's just a fact of my life. I don't know why God has chosen me to carry certain burdens; it's not mine to wonder why. Tis mine yet to do or die, I guess. I don't have a death wish, so on and on I go, stiff, sore, and sometimes grouchy. So please understand, I'm only human.

My body image has drastically changed in the past few years also. I'm no longer a size 2, I no longer have an hourglass figure. Because of the pump, my measurements are 35", 35", 35". I don't have to unbutton my jeans to pull them off; in fact, I have to pull them up when I stand up. I gravitate towards clothes that have a distinct waistline, then I have to remember that I don't have a distinct waistline myself. Ohhh... It used to be like a punch in the gut, but now it just makes me sigh...

My Bayard is truly a blessing to me. He accepts me as I am, health problems, sons, and all. I am lucky. I am loved.

Tuesday, January 6, 2015

Happy new year! (And happy news!)

Yes, I've been neglecting my baby blog the latter part of 2014, but I've been living quite the interesting life, in my opinion, as of late... On January 3, 2015, I married my best friend, Bayard Bray!

Physically, however, I reached my Medicare limit for physical therapy in October, so I was exercising with the physiotherapist, which I really didn't find to my liking. I liked working with my physical therapist, Erin. Then Bayard and I started seeing each other and fell in love rather quickly, so my time got preoccupied and I never got around to rescheduling my appointments. I hope I can go back and see Erin again. Bayard's a trained massage therapist, so he works on my neck when I need it, but it's nice to get out of the house(!)...

My darling sons are each having their own issues, not necessarily related to Bayard's being around. As a mom, I worry about them anyway, but guiding them through adolescence has seemed daunting, until now, having been a single mom. Bayard doesn't have kids of his own, so it's mainly the four of us, plus the 2 kitties. Ooh blah dee, ooh blah da, la-la-la-la-life goes on.

Monday, September 1, 2014

ANDY GOT APPROVED FOR A MAKE-A-WISH!!!!!

He wants to go to Legoland in California, the beach, and Sea World. So far, so great!


Okay, found some more information about ALD on the web:

http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/adrenoleukodystrophy.htm

Tuesday, July 1, 2014

I have realized this sobering fact lately: that my uncle Bill committed suicide when he was 46, two years older than I am now.

Wednesday, May 21, 2014

Umm... Hmmm. Can't think of anything to say right now. I think I've got too much swimming around in my stream of consciousness to be able grasp at the fleeting, floating, shadow idea phantoms to be able to turn out a cohesive phrase. Or two, even three. Oh, here's a nugget I just realized - I'm old enough to have been taught that in correspondence, one writes out the numbers one through ten. Amazing, isn't it?

Oh, today is my mom's birthday. Happy birthday Mom! I love you! 🎂 💞💟

Sunday, April 27, 2014

The Power of Positive Therapy

As I was saying before, I tend to hermit myself and not get out much. Well, that kind of changed for me at the beginning of April when I started physical therapy twice a week for a month. I have to admit that I had a great big huge epiphany in March that even though I've been through hell in the not-to-distant past, I'm much more than the sum of my parts, and - newsflash - I've actually gotten through it and come out the other side... A SURVIVOR!! Wow. I guess I'm a lot stronger than I imagined! My grandmother used to tell me, when I had a problem or concern, that we're survivors, we come from a long line of people who had to work very hard to get what they needed. Her grandfather and great-grandparents came from Russia, as German Mennonites, through Ellis Island, to South Dakota, where they lived in a dug-out side of a hill for some time until they had enough money saved to go homestead in south-central Kansas. There's more to the story, however, I digress from the point of this post. Amazing how I do that again and again and again...

Sleep is important. I didn't fall asleep Friday night, I fell asleep at 4:00 Saturday morning, then woke up at 9:30. We went grocery shopping, then I was supposed to rest. Yeah, right, like that happened. I fell asleep Sunday morning at 1:00, then awoke at 10:00. So at least I got some deep sleep. Remember the post(s) on the effect of weather on my migraines? (Reference... well, previous posts. The subject has not been suppressed.) So, to that which I was alluding, it's been windy, I've had a killer headache all day, but I've not had to take my Maxalt (thank you Excedrin!), and my balance has been horrible! I feel like a pool ball. Do I have to choose a number? How about 12? 23? 44? Oh, hey, that last one's my age! Okay, I'll take the number 1. It's the first in the series, get it?

Crud. Got off topic again. Let's start over. I have PT tomorrow. And Wednesday. Thursday I return to the pain doctor. And Tuesday morning I have Andy's IEP meeting. (The young lady who drives the boys to school for me got her drivers license suspended for not having insurance. Ooooh my.) At least physical therapy helps. I start out on the cycle, going as long as I can, usually 5:00 minutes. Then I do soft squats, holding straps and using my legs to touch a chair and stand back up, using the straps only for balance. Last week she (Erin) had me lifting weights with each leg. We finished with her working on my knots to get them unstuck and loose. She even commented on how much better I'm walking! Straight up and down, not as curved as I used to be, but still have a long way to go. Onwards and upwards!

I want to go off-topic once again, this time about my beloved Uncle Matt, who passed away 21 years ago on April 22nd of complications from AIDS. The world lost a wonderful, beautiful human being. I miss him very much.

Anyway, I'm supposed to be trying to go to sleep. All's well that ends well. Or that sucks, whichever the case may be. I have PT in the morning. And it's supposed to be windy through Thursday. 💨 Yay!! Long live sarcasm! Ginger Whiskers is snoring above my right shoulder. Gotta go! Bye!

- M