The good newzzzzzzzzz is that I got some sleep last night!!!! SO exciting to not only get sleep...but to get it when it is actually nighttime is amazzzzzzing. I slept from approximately 1:00 am until 5:00 am ...for me that is huge these dayzzzzzzz!!!!
It has been exceptionally hard lately....but I say that a lot. I think I mentioned in a previous post, that this is probably my new low/normal. I wish I could accurately describe what goes on with my body. It is even hard for me to comprehend....still!!!
When I go to doctor's appointments, they give me a written synopsis of my appointment. I never bother to read them. The last time I went, something caught my eye about a Karnofsky score, but didn't know what it was. I expected to google it when I got home, but never got around to it. This morning, I finally looked it up. It really isn't a big deal, but still a kick in the stomach kind of feeling. Basically, the Karnofsky score is what they use to determine if a terminally ill patient qualifies for hospice...or in my case, level of debilitation. Normal is 100 and at 70, you qualify for hospice. I was shocked to see that my score ranges between 30 and 40 - considered between disabled and hospitalized/severely disabled. The only reason I am writing about this, is to try to convey how difficult my days really are. I guess that I want you to know that I am not exaggerating my condition...especially for those that I rarely see or those that didn't know me before I got sick. It's funny, Ryan and Phil's wives didn't meet me until I was sick. I have told them ...over and over and over..."hey....I used to be fun..I swear (as I am swearing) !!" Oh well...I kind of feel like they will never really know who I am, because this isn't me.
My friend Vicki, from Seattle is very sick as well. In fact, we met on the MS message boards years ago. Unfortunately she is going through a rough spell right now. Vicki recently texted me the following message "Do you ever feel angry about being sick and about all the things we've lost or miss out on? I'm so angry inside today...just steaming inside. I hate to even admit that, but thought you might understand. Thanks for letting me vent.". YES, YES, YES!!! I do understand and I do feel angry...furious...wanting-to-punch-a-hole-in-the-wall-mad, at what I've lost and continue to miss out on. Hey, I missed Ryan and Liz's wedding....that's about as bad as it can get. (I will never, ever get over that). I completely see myself in Vicki's text. Especially where she said that she "hates to admit it". Honestly, Vicki shouldn't hate to admit it at all. We are not super human. So often, I have intense feelings of guilt for being incredibly sad about my life. The last thing Vicki and I need is to beat ourselves up for feeling sad. It's happens....to be expected....we would not be human if we had a perpetual smile on our faces while dealing with being so sick, with no chance of cure or improvement.... BUT, I do still feel guilty when the intense sadness comes over me. I have to learn to allow myself that "luxury". Obviously, if it was chronic, never ending sadness, it would be time to see my psychologist to help me over the hump...been there/done that, and probably will again the next time I completely crumble. Anyway, I guess that Vicki and I have to learn to cross guilt off of our list of issues!!! Hear me sister????
"Anywaaays"....I've been singing along with my playlist again while writing. I sang along with Neil Young and I swear I sounded just like him...not that it is anything to brag about!...I was belting out "Lost" with Coldplay..my dog was even howling..that's a good thing...right??? Best of all, was the Beach Boys (and I) singing "God Only Knows....what I'd be without you"..I couldn't have said it better myself....XO
As usual....one more thing...HAPPY, HAPPY BIRTHDAY TO MY BEAUTIFUL, AMAZING GIRLFRIEND,ERICA... you are most definitely high up on my list of who I think of when I hear "God Only Knows"...I can't believe it....it just started playing again...not a coincidence :)
Cathy, I'm so glad you decided to start writing on your blog again. You are such an inspiration to me. When I read your words, they remind me that I'm not alone. And, the added bonus is that you always make me laugh...ha, ha. Love the part about your dog howling while you're singing. I'm sure that's a good thing. ;)
ReplyDeleteThanks for being real and honest on your blog. I appreciate you and think of you often. Hope today is a good day and that you get even more sleep tonigh. xo!
I love your honesty. Thank you. It sucks when your body betrays you. I know you as a strong and positive person and just reading this I still see that, except you sound even stronger! We all give you permission to be angry. You certainly have a right to that. Like Vicky said I hope you get more uninterrupted sleep. And I pray that God comforts you and Vicky all your days. I wish I had a magic wand because I would heal you, visit you and make us 10 years younger!! Looking forward to your next post.
ReplyDeleteLaurie & Vicki ~ thank you for your kinds words...makes me feel like I "might" not be nuts!
ReplyDeleteXO