Wednesday, January 11, 2012

Un-Health Plague and One Month

Oooh boy - seems like no matter where I go I just can't get away from the sickness that plagues my family. I've been dealing with illness ever since I was 11 years old and it doesn't look like it's going to be stopping any time soon. I just feel like I've had my fair share of it all.
For a quick recap on my life and the illness I've dealt with.......
My Past with health issues:
* My diagnosis of Crohn's disease about 11 years ago when I was 11 years old and struggles with it... past and current
* My dads triple bypass surgery just a few short years later and his heart troubles that have been with him on and off ever since
* My grandparents struggle for health while I was in HS - constantly in the hospital, heart attacks, problems with diabetes, questions whether they were going to make it
* Loss of my uncle to cancer
Health issues within the last year:
* My sisters struggles with anxiety and depression - though it may not be physical but it's still just as hard for her and us to try and understand and help with
* My aunts battle with breast cancer
* My father-in-laws fight and loss with/to cancer
* My mother-in-laws diagnosis and fight with breast cancer
* My husbands battle for his life and loss of his life with/to Cystic Fibrosis - for 5 years I was a part of that
* My grandpa S. current declining health and move to a nursing home
* My grandma J. current move to the nursing home and rapidly declining health
* My Grandpa J. reoccurrence with brain cancer which in turn has effected a lot

With all of this combined... my parents (especially my dad) are beyond stressed out. The issue that's constantly talked about in our house? Health. Death. Hospice. Hospitals. Nursing Homes. Doctors visits. Medications and you-name-it.

When it's talked about it feels so normal. That's been my whole entire life as I remember it. But after hearing the same thing said 2-3 times in a matter of an hour due to phone calls to notify the rest of the family.... It starts to wear on me... and just overall exhaust me. I can't say that it really upsets me (It does... but not any more than normal) but it wears on my emotions and mental status just thinking about it.

I'm. Just. Sick. Of. It. I want to get away from anything health related right now. I just watched my husband decline so quickly, fight for his life, struggle to breathe, make the decision to switch to comfort care, making the decision to discontinue life support - I'm NOT READY to go through all of that again with my grandparents. With ANYONE for that matter. I just want a break - a very long, extended break. I'm shocked I'm not the one who is sick right now. I'm thanking the Crohn's Gods for keeping me healthy during all of this. Fingers crossed it continues.

Thinking about making end of life decisions for my grandparents somewhat brings back the memories of Spencer and what I had to go through with him exactly 1 month ago. It's so fresh. I know so much more than a 21 year old should. I know the ins and outs of hospice and palliative care. I know the decisions that have to be made. The plans that are to come and follow. The funeral "routine" before, during, and after. It all just sucks. I can only hope that things can be done for my grandparents so that they can live to see at least a few more months. I'm not ready to fully revisit the process again... even though it won't be myself making those decisions - I'm family... the granddaughter and I will be in that process. I will hear about it no matter what. My heart just breaks. I. Hate. Death. and it scares me.

For right now, yes, I want to be completely away from anything medical... but my heartstrings are pulled in two very different directions. My grandma has not been doing well this last month. She's been in the nursing home, been in the hospital, there's been a few times we thought she wasn't going to make it... The care she is getting is horrible and inexcusable...... but yet I have not seen her since I've been home. She could be living her last few days without us fully knowing, yet I have not been able to take the time, to muster up that courage to go and see my grandma. Sure I think that I will be okay going to see her - but I am so scared it's going to bring up emotions I've long forgotten about. I'm afraid I'm going to be so vulnerable.
I'm also SO used to care taking... so used to being in a position to help. I know that now is not the time - but hearing how my grandma is getting treated and not fulling being helped is really upsetting to me. I went through ALL of this with Spencer when we switched floors in the hospital. Him not getting the proper care I thought he deserved. etc. It just feels like my nature to go up there and help in some way - any way. I feel like it's my roll... but its NOT anymore. My cousin has been taking very good care of my grandma. She also works in health care and knows her stuff. But for some reason, I guess since I've already been through it personally, I feel like I should help. If not help - at least visit. I don't want to regret not spending time with her while I have it.
I just don't know. I am torn. Very conflicted. I don't think anyone can fully understand my situation unless they have actually been in my shoes =/

Oh dear - I just don't know what to think. I have so many mixed feelings and so many thoughts that go through my mind - sometimes it just takes forever to sort through them all.

Today marks one month since Spencer passed away. It's starting to set in more and more each day. I finally called social security on Monday to report Spencer's death. That was a very, very hard phone call to make. It really threw my day for a loop. I was just a ball of emotions. There is something about officially reporting it that makes it SO MUCH more REAL to you. After that phone call I have put off several others that I really need to make. I know I'm going to have to deal with them all.... but I just don't want to. That was a hard call - but now I have to deal with the bank and figure out how I can control his account since I didn't have POA (something we needed to do but were never able to... ugh) and I don't know if he signed anything that turns his accnt over to me. I just dunno how that will go. Also need to call my cell phone company to see how long our contract is for... that won't be a hard phone call - but I don't know any info about our account. Spencer always handled that... so I guess in turn it makes it hard. I also need to call the welfare office to talk about Spencer's SSI payments and get them stopped and returned.... That's a very important call - but I just don't want to make it =/ I'm just going to take this one day at a time I guess. as long as I get it done by the end of this month I'm going to tell myself it's OKAY.

I just can't quite believe it's been a month. In some, and most, aspects it's went by very, very slowly. I'm on "Widow Time" as I've recently been heard it called. Times just seems to stop and it feels like 3 days have passed when only one has. But then in a few aspects it feels like it's went really quickly. It feels like yesterday that I was holding Spencer's hand for the last time, you know?

Also, a couple of days ago I started to go through a ton of bills and EOBs and papers that were on Spencer's old desk... Oh boy. It was a very slow process going through everything. Hard to toss anything, but I managed by reasoning with myself. But I ran across the package of death certificates, right after I looked at his birth certificate. I had never looked over his death certificate before. I didn't know what was on it. My stomach kinda sank when I got to the end: Cause Of Death. Boo. Of course it was what I already knew - Cystic Fibrosis, hospital acquired pneumonia, liver disease, and kidney disease. Yup - his body just basically shut down. Sucks. Just another reality of CF.... we need a cure so desperately.

Speaking of the EBOs.... (Explanation of benefits if you were wondering...) I got the damage of Spencer's 3 month ICU hospitalization. And this was just from ONE EBO... it wasn't a combination of several others I have received. But did you know that it totaled up to OVER 760,000 dollars?! Combined with other procedures, other meds, bills, and other hospitalizations that year - I have no doubt Spencer was easily a million dollar patient, just last year. Jeez. I can't even IMAGINE what his life-time total is. O_O Praying I get stuck with nothing. There is some things I do have to pay off that I knew I'd be stuck with.... but I am SO grateful for good insurance. He had AMAZING insurance that covered pretty much everything. <3

A phrase that kind of gets me, especially after reading so many different widow's stories, is when people tell you it will get better with time. I don't think it gets better - I think it gets DIFFERENT. It certainly hasn't gotten better 1 month out - I'm just starting to realize that he's gone. Then comes all of the next things I realize including, but not limited to, living on my own, controlling all my bills, not having one to come home to at night, moving again, making new friends, not having a very best friend, holidays, birthdays, significant dates, dating, marriage again, children, family..... etc etc etc. Throughout my whole entire life I am going to be missing a piece of me. A very important piece. Just a thought on that topic - I'll let you know if it changes.

Anyway.. I think I've prolonged this post quite enough. More to talk about but I'm sure you're sick of reading by now. Need to space this stuff out - gives me a reason to write every day. Perhaps I can start a list of things I want to talk about so I have that reason to express myself every single day... We'll see how it goes.

Until next time....-

1 comment:

  1. I don't know what to say to make any of this easier or better, probably because that can't be done. I know what its like to be in love, and I know what its like to be the sick one of the two. My health is on a decline to the point where living literally hurts, and I feel so bad for my husband. We've been discussing end of life plans, because you NEVER know what to expect, and if you did, it wouldn't make a difference in losing someone. I feel guilty for putting people through my life with CF, I feel like my husband deserves better, I feel like I should just be shut away, but its because of people like you, and my husband, who love us unconditionally, who support us, who literally PICK us UP when we are down, who spend hours at the hospital, weeks of anxiety, fears etc, because of that we are able to live a full life...because of the service, the love, charity, hope, faith of people like you we are able to press forward with that same likeness. without those things, our lives would be meaningless and not worth the pain we feel...i've had 22 years of other people motivating me, and though I'm scared and sad to think of when I finally succumb to CF, I know that I will be able to feel proud of who I am.

    In Matthew, a woman wanted to touch the hem of His garment, because she had faith that it would heal her. Jesus looked at her and said thy faith hath made thee in Jesus, faith in healing, faith in FAITH. The great thing about all of this, is the knowledge that you have of someday being sealed in the temple to Spencer, to have and to hold for time and all eternity, that is enough motivation to press forward, life isn't fair. it actually really sucks, but if life was fair we wouldn't have a Savior to die for us and take on our sins. Someday you will see him again, and you will see the Spencer that only you knew, he will be made whole because of the faith he exhibited, you will have the family you dreamt of, you will have so much more than what this earthly life has to offer. keep going, it won't get easier, it will just change, like you said. it will be different, it will be challenging. you'll have moments of sudden flood gates opening, you'll have to gather yourself up off the floor, and when you are in those situations, think of the temple. think of that kiss you both shared when you were married, and think of how much sweeter it will be when you are both healthy, and living with God. <3