- I wouldn't be able to keep my home health nurse, who comes to me every Monday to change my dressing and draw labs, who I trust and love because she knows what the fuck she's doing.
- We're moving eventually, and if we don't stay in Colorado, what then?
- We may end up having to switch back to my old infusion company, unless ThriveRx contracts with the hospice company.
- We're not even sure what will be covered by our insurance.
- I realize I am dying, and that fact just rears its ugly head every time I think about hospice care, and I am not ready to die yet.
My reasoning doesn't seem like much but... I just don't feel like I'm ready for such a drastic step. It's like that time they wanted me to go casket shopping. Like seriously? I'm only 20 years old. I know my life is cut short, but I'd also like to keep trying to stay alive as much as possible. I'll be 21 soon, and I won't be able to have a party or go out for drinks or anything like that, but I'd like to celebrate the fact that I've made it this far, without being depressed about my disease.
I've been really struggling with all this. I don't want to have to make this kind of decision. I'd almost rather be unconscious and have someone pull the plug to put me out of my misery. It's really getting to me and it's becoming harder and harder to stay positive.
There are no treatments I can undergo. Every one is too risky for me, or too invasive. We talked to my GI doctor today, and we didn't really get anywhere besides him talking about how he's clueless and my disease is so rare...
I guess nothing can be done.
Well it's like this.... You are more braver and stronger than I could ever be. I do not want you to get depressed (I am doing that for the both of us) I see by reading blog I think you help some people cope with what they are going thru so maybe thats a good purpose. I raised you to be strong and you are proven that daily. I know you want to give up and I have to stand my ground and demand you don't ;) We both are so lucky that you have John in your life as he as shown he is one hell of a man. Missa I hate that we cant be there to help out and I deal with that emotion every single minute of the day but as you know dealing with Mom's illness is tough as it is and its hard to get her treated as is. Plz stay strong and keep doing whats best for you and also John, But by all means do not give up and die because I know that I could not handle and not wanting to sound selfish...... u have to let me go first lmao I Love You so much you will always be my punk.
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