Back on Hospice

Hospice is designed to give supportive care to people that are in the final phases of a terminal illness. Well, hello Hospice, we meet again, except this time, I actually like this company and the nurses. They are they to focus on comfort and quality of life "rather than cure". Actual rules are that several doctors agree that you are in the final six months before you are even allowed to enter hospice care. 

So, alas it looks like I am dying still...so that's what I'm doing....patiently and kind of happily dying.

Letting go.

I am so terrified of falling off the tightrope.

But aren't we all on some sort of tightrope?How do we control it?

I’ve started multiple blog posts since the last one, but I can never seem to get into the desire to write them. I feel like all I’m doing is complaining these days, but there isn’t a lot of really positive stuff I CAN share when living with a terminal illness. I want you to see me as this strong person that you all tell me I am, but at the same time, I need you to understand that there’s no strength in me when I feel like this. The only thing that gets me up and out of bed every day is my birds and my family, because I’ve somehow conI take vinced myself they both need me, even though I know that’s not true. They both would do fine without me–diminished, perhaps, for a time, but you move on.

That’s not to say that I’m ready to die. I still want to fight this and keep living and writing and loving and caring and sharing… but it gets harder and harder. And the longer I go without a cure or a surgical intervention, the less likely it is that I”m going to survive another 10, 20 or plus years. I’ll be lucky to make it five more–if even–and if the way I feel matched the way things go down, I’d be dropping dead next week.
I take Gabapentin for nerve pain, but it’s nerve pain I might not have if the fluid were able to be removed from my body. Although I do have acute adult scoliosis–so who knows what’s causing what? My doctors don’t really care, because my severe conditions are more important to them than my back pain, even though my back pain seems to cause more quality of life issues for me than anything else. They do nothing but throw pain pills and nerve pills and muscle relaxers at my back.

Well… Pain pills that make me sick to my stomach and unable to function for a time, but without them, I’m unable to do anything but lie in bed and writhe in pain. And I;m not being hyperbolic there. I lie in bed and writhe in pain until it kicks in, the pain is so bad. I will tremble and be unable to speak until I feel it wash over me sort of like a water wave released from my brain that rolls down my body, then back up, and then slowly I realize the pain is subsiding. 

And then when I take pain pills, I am accused of being a dope head. My pain is real but they don't know that because they aren't around me enough to see me hurt.

Being sick is not fun and it is certainly not pretty.

This is the truth. This is the truth of being sick every day. In laments terms; it really sucks. I can be upbeat and happy most of the time but I also have to admit when I am angry, sad, lost, feeling hideous, and hurting.

I love you all so much and God loves you too,

Shanna xoxoxo

Also, we have started the fundraising campaign again. The link to donate is gofundme.com/hope4shanna2016.