Saturday, October 20, 2012

I'm infuriated

Okay... I never, ever make political posts. I never comment on others. I never talk about politics because I will be the first to admit that I am not that knowledgeable and I only have strong opinions about a couple of things that play a role in my personal life. Not to mention I hate the backlash that comes from politics -- and I please ask that if you choose to make a comment on this you keep it clean and nice. You are very much entitled to your opinion, but please don't try to sway me from my own. I know that my opinion won't sway yours and I'm not trying to push my opinion upon you. But I wanted to share this because it struck such a cord within me...

I am very, very angered by Romney's comment. Not only am I angered, but I am infuriated and I take it quite personally, as do many of my friends with chronic and terminal illnesses.

Firstly, people die every day because they do not have insurance. I have seen and heard it all, and that is the honest truth. What about those needing life saving surgeries that doctors won't perform because the patient doesn't have insurance? What about those needing transplants in order to live another day who don't have insurance and can't afford it? What about those who NEED, medication to keep them alive but don't have the insurance or money to afford them? They don't get these things handed to them. They can't just go to the ER, as he seems to think, and ask for medications that are going to keep them alive. He gives example to a heart-attack patient. Sure they may be able to get treated for that heart attack for a couple of days, but what about the surgery that may need to follow? What about the rest of that patients life on blood thinners to keep it from happening again? What about the long term care that he doesn't seem to mention? Who pays for that????

I'm going to put this into a very personal context for a minute. If my husband did not have the insurance that he did when he was alive, he wouldn't have been living as long as he did. He was very, very LUCKY that he was able to stay on his moms insurance until he was 26, plus get covered by medicaid. Had he not been able to stay on his moms insurance, we would have been stuck with ungodly medical bills that there would have been no way we would have been able to pay them. And I would most likely be declaring medical bankruptcy at 21 years old. Last year alone, he was EASILY over a million dollar patient. And that is NO exaggeration. Had he not had insurance. There would have been no future for him. There would have been no option of a transplant for him. He would have died much sooner. (that may have been poorly worded, but I hope you got the point)

And what about those with chronic conditions? People like me who, if not on maintenance medications, who can become violently ill and cannot function without these thousand dollar medications? When medications like this aren't available to us because of the sad fact that we don't have, and cannot obtain medical insurance, and we come to be incredibly ill, we are living a life that is not worth living.

Not to mention those of us with these health conditions get discriminated against constantly. Frankly I am completely sick of it. We are denied life saving meds, procedures, surgeries. We are denied medical insurance, forced to pay astronomical premiums because we are sick, or we are forced to pay for our insurance but cannot use it for a year. If this isn't discrimination I don't know what is.

Sorry if this hits someone the wrong way. I don't believe I'm missing the point here with any of this. This may just be one issue out of many, but it's something I feel very strongly about. I can't even imagine what will happen if "Obamacare" is overruled. I am so, so SICK of our healthcare system changing. It was a MESS when Spence and I were dealing with it with his medications. Every single hospitalization, clinic visit, and trip to the pharmacy was dreaded because there was always some new loophole we had to jump through because things were changing back and forth. I don't want that to happen again. So far, Obamacare has made things so much better for me, and it made things a lot better for Spencer.

I almost feel as if one side wants to overrule it "just because". That absolutely no one has what is better for America in the back, or front, of their minds. No one thinks about the impact it's having on people right now. They just want to be the ones who are "right". And it angers me.

I don't know what's best for our country. I don't know what's best down the line. I am no expert on any of this and I would be the last to tell you what's "best". But I do know what is working for me and for my family right now. I do know what will be good for me and my family within the next 5 years. And that is what is currently in place.

Tuesday, October 9, 2012

You know what I miss??

...... Those cold nights snuggled up beside a warm body under the covers. My "human heater".
The hand that was laced in mine during movies. Walking in the grocery store.
Sitting beside the one I love.
Hearing "I love you" said a million times to the point it got on my nerves. almost.
A smile that said a million words.
Small gestures that said "I care".
3 words in a text message knowing I'm missed and loved.
The anticipation of coming home after work to my hubby.
Being introduced as "My wife".
Introducing him as "My husband".
Neck rubs when I am tense without even having to ask.
Giggles over things only we would understand.
Washing dishes together.
Watching youtube videos online.
Mentoring young teens on SBW together.
Sweet kisses shared every morning when you wake up and every night before you fall asleep.
His face being the very first thing I look at when I open my eyes.
Intimate kisses quickly shared when we're surrounded by a group of people. Friends or strangers.
Attending church as a married couple. Attending church. Period.
Looking over and seeing Nacho and Spencer snuggled together, napping on the couch.
The love of man and his dog.
Having someone understand you on a level that no one else can.
A hand rubbing my back when I'm having a breakdown.
Someone to help me when I'm feeling sick.
Someone who knows exactly what to do and not do when I have a horrible migraine.
A driving force in keeping myself healthy.
The inspiration he gave me.
Courage and strength that radiated from him when I feel weak.
A home built around optimism as much as we could.
Wearing my wedding ring and knowing he is wearing his. (gosh I miss my ring...)
Not having to second guess myself with things I never would have before.
Someone to bounce ideas off and gave me ideas back. 
A support that was unwavering. 
Being serenaded at the most random times to the most random songs. 
Getting a voicemail with him singing, "I just called to say I love you". (how I DESPERATELY wish I still had that voicemail....)
Cooking for two (or 4!)
Nightly TV shows together.
Dates with my one and only. 
Long car trips to Kansas and his dads.
Hearing him talk in his "Nacho Dog" voice.
Hearing They Might Be Giants Songs blasting from his computer.
Sharing memories together that only the two of us know about.
Having a steamy conversation on AIM while he was doing his treatment and we couldn't hear each other talk. (sorry mom!)
Looking forward to the challenge of what I'm going to get him for Christmas.
The anticipation of what he was going to get me for my birthday and Christmas.
Being able to buy something in the store if it made me think of him.
Comforting him when he cried. Being there for him when he was upset.
Being that one thing in life that kept him going when all he felt like doing was falling apart.
As everyone said, and I only recently came to believe, being his angel.
Dates at Olive Garden and Village Inn.

His smell.

His voice. 

His smile.



I miss those things that couples take for granted every moment of every day. The things that you don't even think twice about. The things I never thought about when he was alive. These are things that I loved and savored every moment of when I had the chance, but in those moments I never thought I'd never have that again with him. It didn't dawn on me that I'd miss the simple things so, so much. Almost more than anything.

Our relationship wasn't perfect. Far from it. But I am so thankful and so blessed that I can look back at it and see so many more positives than negatives. I am grateful that I am able to miss things like this. If we wouldn't have had these things in our relationship, it wouldn't have been as special as it was. As fulfilling as it was. 

I just miss him. I miss this. I miss "us". If only we could go back in time....

If only....

Thursday, October 4, 2012

Oh how I remember....

Oh the things that set a person off…

I was reading an e-mail that our supervisor sends out on a daily basis called the “Daily Diagnosis”. It talks about infectious diseases, medications, and different types of research going on. I ran across an article that was talking about how Mamba venom contains a painkiller that works just as well as Morphine but without any of the side effects. It went on to say, and I quote, side effects “...such as depressed respiration and addiction…”

I know that this doesn’t seem like a big deal, it’s just words. It’s just simply talking about a pain medication. But this is a medication that helped my husband ease into the next life and earn his angel wings. It helped his excruciating pain level. It made him more comfortable than he's ever been here on earth. It helped him not panic when we started and continued to withdraw the ventilator. As we upped the Morphine, his breathing became more shallow, or as the article states, he had significantly “depressed respiration”.

Reading those two words hit hard. I don't think it was specifically those words that did it, but just the topic in general. Morphine. A drug that I now really love to hate. The decision to allow the nurse to give him the very first dose of morphine was one of the very hardest decisions within the last week of his life. It meant that I was taking control and giving the medical team more control than they've ever had. By allowing them to give him Morphine, I was taking away my husbands ability to speak. Communicate. Move. Be involved with his medical treatment like he always has been. I was beginning the very hard process of handing him over to God. I was ending our mortal relationship in the physical sense. Everything was again changing and I had to brace myself for what was to come.

Spencer had always been in charge of his health. He may not have made the best decisions sometimes, but it was always his choice. His final call. He made critical decisions about his health long before a young boy ever should have to decide these things. And he made these critical decisions up to the very last week of his life. Choosing to have DNR orders. Planning his own funeral with his wife. Things like this that no one at the age of 23 should ever even have to think about.

But the moment I asked for the Morphine was the moment that I became in control of his fate, so to speak. The moment that I began making every single decision for my husband.  It was in my hands. I knew what Spencer wanted. We'd talked about it multiple times. It was always changing and the topic was always being brought up.... but I knew his wishes on how he wanted his life to end. Painless and struggle free. He wanted to be at peace and experience an easy transition.

Even though I knew this is what he wanted, making that decision was so incredibly hard. I remember the nurse coming in the day before he passed away. She noticed that he was moving around a lot and a little bit uncomfortable and asked me if we should give him just a little bit of morphine. At one point she even brought some in the room. But I continued to tell her, "No, not yet." I needed time with him and I knew that if he had any kind of pain meds in his system I would not get the time I wanted and needed. So I continued to decline throughout the day and she finally just told me, "well if you think that he needs it at any point in time, just let me know and we'll get it for him." I finally got some precious time with him the day before he passed away. It was sweet, intimate, and perfect. I didn't really have all that much to say to him at that point except reminding him that I loved him with all my heart and that I would be okay. I asked him several questions and we discussed a few different topics.... and then we just laid beside each other, hands intertwined, never letting go; heads close to each other; kisses on the cheek; smiles being shared when we looked into each others eyes; tears being shed as we knew... just knew; hearts beating together as one as we drifted off to sleep.

That evening as my parents drove in from Kansas to see Spencer and be with me he had his last alert moment, which I'll share at some point, but not now. It was so very special for me and my family. When he said what he needed to say to my parents and they said what they needed to say to him, he drifted off to sleep. As we were sitting in his hospital room, chatting, we noticed him moving around a lot. Getting really uncomfortable. That's when I just knew. He needed something to help him. He was in pain. He couldn't breathe right. He was suffering. Even though it was hard to press the nurse call button, I did it and asked for a low dose of Morphine so that we could both sleep through the night.

That night I slept like a baby. I woke up a couple of times to the alarms from the machines, but I got a very restful sleep. Probably knowing that he was comfortable and I had a VERY long day ahead of me, as I knew the next day, I just knew deep down in my heart, it was going to be his last. That night was going to be my very last night with my husband. It did take quite a long time for me to fall asleep. I couldn't stop looking at him rest. I couldn't help but think of the time we shared together in the last week. The very special moments we had. But I was at peace. For the very, VERY first time throughout that whole ordeal, I was at peace, just like Spencer was. I had accepted, as much as one possibly can, the fate that awaited us the next day.

On December 11th, it was a fairly slow day. I had been in very close contact with the palliative care team and expressed my concerns and both mine and Spencer's wishes. We made the decision to keep a very low dose of morphine in his system to keep him comfortable.

There was a moment that they asked me if I wanted them to give him more Morphine, but he looked really comfortable and so I told them that we should just hold off. I think there was part of me that just wanted one last moment with him. (of course one last moment would have turned into 2, then 3, 4, 5 and so on... you get the idea...) I wanted him to open his eyes and see me. Smile at me. Kiss me back. Hold my hand. But making the decision to not give him another dose of Morphine was not my brightest idea, but how was I to know?

He started coughing and when we suctioned it out of his lungs he started to bleed. A lot. It was terrifying to me. My parents had just went downstairs to grab breakfast and I immediately texted my mom and told her to hurry upstairs, that Spencer wasn't doing well. I honestly thought that was it. He was going to die right them. It was the scariest moment of my life.

I thought I was watching my husband bleed to death right before my very eyes. I was so, SO angry with myself, not only in the moment after it stopped, but for weeks and a few months after as well. I kept telling myself if I had allowed them to give him the Morphine, that never would have happened. He was suffering, in pain, and not comfortable at all. That wasn't what he wanted and I was the one that screwed it up. I really felt like I had let Spencer down by not respecting his wishes. I felt like I was being SOOO selfish trying to keep him alive despite how he felt. I felt horrible. As he was coughing he was 'awake' and just kept looking at me. I don't know if he fully understood what was going on, but I continued to tell him that it was going to be okay, not to panic, and just try to relax. He was struggling for every breath. Struggling more than I had every seen him struggle before. You could see every muscle and bone in his neck with every breath he sucked in. It was terrifying. It put tears in all of our eyes. Even my dad, and he VERY rarely shows emotion. It was awful. Surprisingly I was able to stay composed on the outside, but on the inside, as I've stated, I was beyond the point of freaking out. I was panicking. I was in a fight or flight response internally. I don't know how I kept it together. It was all for him.

But that moment really brought the big picture into place. It really made me realize everything that was going on. I was so angry with myself and so sad and scared and hurt. I decided then that we needed to get him Morphine. Not just a low dose, but a dose high enough to keep him fully comfortable. A continuous drip, whereas before it was just bolus doses. This time, I knew we couldn't stop it. I had to put myself in Spencer's position and realize that he was downright miserable.

They told me that I could take things at my own pace. We didn't have to rush into anything, we should do it when we were ready. When I was ready. To up the Morphine more to make him comfortable. To ween down the ventilator and eventually remove it. To let my husband pass away like his body was so desperately pleading to do.

I remember when the moment came that my parents and I were just watching Spence. Our chatting had basically stopped and we were just waiting. What for? I don't know. We all knew what the next step was. It was that huge elephant in the room we were all ignoring and talking around. My parents were waiting on me. I was just waiting on when it felt right. when I felt ready. But honestly. When do you feel ready for something like that? You don't. You just don't. Ever. After talking about it a little bit with my parents, I made the decision to page the nurse to get the palliative care doctor in his room to start the process. Pressing that button was so surreal to me. I was just going through the motions at that point. I have no memory of what made me finally make the decision to go on with the process. I don't know what on earth (or beyond) gave me the power, strength, and courage to press that button.... but all of a sudden my arm was reaching for it and it had been pressed.

After speaking with the doctor and getting everything ready we started the process. I think I'll stop there as I can't quite find the words to share the rest of it.... I just don't think I'm quite ready.

But my point of this whole post is that just reading those two words, "depressed respirations" and reading about Morphine brought me back. Back to my husbands final two days on Earth. I got many flash backs and just kept staring at those words, unable to look away. Unable to think about anything else. I saw his face nearly perfectly in my mind. And it was a face that I didn't want to see. It was an image when he was struggling so much... when he just could NOT breathe. It was the image of him as we were upping the morphine and weening down the ventilator. The feelings that I had came rushing back at full force. All at once. How I wanted to scream out so many times during the process, "STOP IT!! We're going too fast! This is the wrong decision!!!" The feelings I had when we had finally disconnected the ventilator and he had passed away. The words ringing in my ears when the doctor said, "we do think that Spencer has passed away now". When the second doctor came to confirm the time of death. How I so desperately wanted to yell at them to bring him back. To just do SOMETHING because there was NO way that my husband could be dead. There is no way that I just watched him die. The picture came to my mind of his lips as they started to slowly turn blue throughout the process. His face as it came a pasty white and drained of all color. How lifeless his body was. I was able to feel, again, his hands as they started to chill, reminding me that his body was not alive anymore circulating his blood and keeping it warm. Being amazed at how quickly it all happened. How fast things change. I remember knowing when it was time to leave. I told myself before hand that when he started to get cold... it was time to go, because that was NOT the Spencer I wanted to remember.

You know, I hate how I can recall memories like this so well.... relive them as if they were yesterday. Remember every detail of his face and even be able to feel my emotions and feel his skin as if it was just yesterday. Yet I cannot do that with happy memories. Fun memories. The "feel-good" memories. It drives me nuts. I just hope some day I'm able to recall those just as well, if not better, than I can recall these memories that resurface so quickly. So suddenly. And so perfectly.

Monday, October 1, 2012

I don't feel him...

I've been connecting with this blog a lot lately. I've recently shared a post on my facebook and I've read several posts lately that have really summed up some of my feelings.

The post that Cassie wrote today really pulled me in. She's talking about how she cannot feel her husband and it's something that is nearly too painful for words because she so desperately wants the experience.

An experience that so many people around me have claimed that they have had. Sometimes I wonder if people are just saying that they feel Spencer with them because they really do, or because they think it's something that I want to hear. Something that will somehow comfort me. If you really feel him near you -- fantastic. I'm happy for you. (and insanely jealous) But if you're saying it because you think it's what i want to hear.... Please refrain because you have no idea how much it hurts me sometimes to hear other people talking about an experience as personal and intimate as this.

I cannot 'feel' Spencer. I can say that I never really have felt him around me after he died. Now I have no idea what feeling the deceased is like. I've been told that when they are around you get really emotional and start crying. I've been told that you feel a sense of peace around you. I've been told that you just feel it in your heart. In your chest. I've been told that you just know.

I think we like to think of it as this comforting, peaceful, wonderful, warm, and perfect moment -- I think we (or at least I) hold my expectations way too high when it comes to feeling when my husband is around me. I think that I imagine it as this life changing moment. That the world stops and it's SO obvious that he's around. Something that I am most certain does not happen. But I have just never had that "Oh, I just know that he is with me" feeling. Ever. I cannot say that he's never around. I am sure he is. He promised me he would be before he died. But I've just never had that experience. If I have, I have not noticed it.

Through her words, I feel like she sums up my feelings behind not being able to feel Spencer much better than I could ever describe it. This paragraph is how I feel a lot of the time:

"The fact that I don't feel him around me is one so painful that I can barely talk about it. There is nothing I want more than to feel his presence. Nothing. I talk to him. I beg him to visit me. I beg the Universe to give me the comfort of his presence, even for a moment.

The fact that it doesn't happen is torturous to me. I tell myself that it's hard for energy to communicate with those of us still in bodies. I tell myself that I'm not ready. That I'm somehow subconsciously not allowing the experience. Somehow, I speculate, I might be so trained not to believe that I've discounted the subtle signs before I can even truly see them."

I do the same. I beg my husband to be with me all of the time. I don't think that he's abandoned me. Not at all. But often times I wonder if it is my fault that I cannot feel him. It's not really a guilty feeling, I guess I can't really describe it. A lot of times I truly think it is because of my current lack of faith that I cannot feel him. If I was more in touch with the spirit (which right now I am probably as far away from the Spirit as possible) I could feel his Spirit wrapped around me. (and really this could get into a whole new topic, -sigh- but I'll save it for later). I was talking to my sweet mother the other night about an experience that I had and she brought up something along the lines that I need to talk out loud to him. Let him know that I am ready to feel him. Let him know that I appreciate when he visits me. Until that night I never did think it might be an issue of me not being ready to feel him near me.

I am sure that I miss obvious signs of him being near every now and then. In my rational mind I think that it's just a coincidence... things like -- Oh the two peas in a pod? No, not from Spencer, just something that naturally happens.

I also like what she says here:

"I don't feel much of anything other than the loss, the missing, the Dave-shaped hole in me, and the utter frustration that we were pulled apart so early...... Maybe I’m just impossible to satisfy because what I want, what I need, is HIM. Not his memory or a sense of him. I want HIM and everything else is a pale and unsatisfying substitute. "

I think that this speaks true for me as well. Not literally, because I do feel other things. I mean I'm happy with my life (as much as I can be) I feel other emotions.... but kind of figuratively. In this context of "feeling" him. And I wonder if I, too, am just impossible to satisfy because I never will get what I want and what I need. The memories are not enough. The "feelings" are likely not near enough, if anything maybe they are too painful for me to bear and so I block them out.

I just wanted to write out some of my feelings to this blog before I went to bed. I want to write more, because man, I sure do have a lot to write about... I haven't been blogging lately and things have really built up. But for now this will have to do. I am definitely open to other people sharing with me who have experienced something similar... to connect with me on this level of understanding. It always helps to know that you're really not alone...