Monday, June 2, 2014

I know i just posted an update a few days ago however, i have had a lot on my mind since the last post. Being a caregiver is hard work and working on top of being a caregiver is even harder. I was blessed with a job that has a perfect schedule for me and one that allows me to still feel fullfilled. Ron has a condition called communicataion apathy or something like that. Basically he no longer follows the script of normal conversations. His responses are typically just a few words long and he rarely has the ability to strike up a conversation. He has been this way for several years and now I find it difficult having conversations with others. I am working on it but it is a diffuclt habit to break. The funny thing is, Ron and I have wonderful conversations in text with Ron. It is so amazing to me how easily we can communicate with each other thru our text messaging. I feel like I have found a tiny piece of the man I married. I am even getting over expecting the same easy conversation when we are together. My new job affords me the oppurtunity to meet and share with many new people. I was terrified at first but as i enter the 3 month mark from when I started, I am getting better at conversating. I have also realized how much our lives are defined by his illness. I cannot tell you how many times I have said "before he got sick" or "after he got sick". I still miss our old life very much but I have accepted our new life for the most part. Acceptance is one of the final stages of grief so I guess I am making progress. That is all I have to write for now. Thank you for reading. Never take anything in your life for granted. Change is not preventable and forward progress should always be counted as a success. I am borrowing my mom's computer and it won't let me edit so I apologize for all the errors.

Wednesday, May 21, 2014

An update on us

I haven't updated this in a long time so I thought I would remedy that. Good news is that Ron has been stroke free and stable for almost 4 years. Hooray! Bad news is they think he may be having tiny seizures in his brain. We are working on finding the cause for the episodes he has experienced over the last year or so. As for me, I found a job! Not only a job but one I love that fits perfectly into our life of doctor visits and tests. We are both trying to get in to better habits so that we can lost some weight. All in all we have so much to be thankful for. We are finally in a good groove learning to live with Ron's permanent disabilities. His doctor thinks he may have arthritis in his back from all of the meds. We will know more about that in a few weeks when he has the xrays done. And as I always end these..never take anything for granted. In an instant your whole life can be turned upside down forcing you to find a new normal. Thank you for reading.

Tuesday, October 30, 2012

It is that time again...

It is time for me to beg for money for Ron to receive cognitive therapy next year. If you cannot give, please share. Thank you!

Tuesday, October 23, 2012

What is grief....

What is grief? The dictionary says that grief is keen mental suffering or distress over affliction or loss. Grief is different for each person but for people in situations similar to mine, grief is an impossibly soul splitting, painful exercise in futility. The man I married is gone. My Ron started to die slowly after the first set of strokes. SO my grief is more complicated since I am unable to go through the grief process because technically Ron is still here. He is in the next room and I can't go to him and ask for a birthday hug, or just to hold me. I can't move on either because even though my Ron is gone, my heart didn't get the memo. Ron is my soulmate and has had a strong grip on my entire heart and soul for a very long time. I wouldn't have that part any other way.  In November we have been together for 15 years, and in January we have been married for 12. I got my epic love story. I am eternally grateful that he was given to me when we were so young, and I needed him so badly. He literally saved my life. I was in a very dark place when we met. He did everything in his power to show me the light and he did. He taught me what unconditional love truly meant. 

I have been asked on many occasions why I am not just happy that he is alive. Well, the answer to that is simple, watching him suffer almost daily is brutal. Each and every day I look for my Ron because each day I wake up and for just a moment I forget about the past 5 years. Just for that brief moment I have my fairy tale back. Then it hits me and he is gone again. People tell me a lot he doesn't LOOK sick but they don't witness when he has trouble finding the words or forgets to eat or the sleepless nights when his brain cannot figure out how to process an emotion. I try to filter things before the information gets to him, break it down into bits he can process but that isn't always the case. 

My goal each day is to try to make our sucky situation suck less so it doesn't upset him. He hates who has become and misses his old life. He loved being a firefighter. He loved our large group of friends and our active life. He misses the same thing I do..even if his memories have holes..He misses what we were before. I have noticed that I use that word a lot while telling stories... defining our lives to before he got sick. 

I try to go back and read the older posts on this blog, but I just can't seem to get past the first few sentences. I guess that means this will be raw for longer than I anticipated. I am grateful the memories and emotions are usually fleeting for him because this daily overflow of memories and pain is a lot for anyone to bear. I don't say that looking for pity for myself because there are people WAY worse than the hand we were dealt. If I am looking for silver linings, Ron not being able to "feel" much is definitely a lining of some sort. I am going to include a song that tells exactly how I feel about Ron. It was popular when he was hospitalized one of the first times. Read the lyrics with my story in mind, you will understand. And just like I always end these..for the ones who ask me what they can do for me..CHERISH EVERY SINGLE MOMENT BECAUSE YOU NEVER KNOW WHEN EVERYTHING COULD CHANGE IN AN INSTANT.


I wanted you to know I love the way you laugh
I wanna hold you high and steal your pain away
I keep your photograph, I know it serves me well
I wanna hold you high and steal your pain

'Cause I'm broken when I'm lonesome
And I don't feel right when you're gone away

You're gone away
You don't feel me here anymore

The worst is over now and we can breathe again
I wanna hold you high, you steal my pain away
There's so much left to learn, and no one left to fight
I wanna hold you high and steal your pain

'Cause I'm broken when I'm open
And I don't feel like I am strong enough
'Cause I'm broken when I'm lonesome
And I don't feel right when you're gone away

You're gone away
You don't feel me here anymore

Friday, July 13, 2012

Just when you think you've got a decent grip on the handle...

Just when you think you've got a decent grip on the handle, the damn thing disappears. I honestly believed I had gotten pretty far in the acceptance stage of this whole illness stuff, until today. I had to explain to my almost 6 year old nephew that Uncle Ron would never get better, or be the guy he remembers Keep in mind, Ron's first major stroke was on Coleman's first birthday. Yeah, you read that right...we spent our nephew's first birthday in the hospital. But Coleman has memories of Ron before he got to the point he is now. He remembers playing on the floor with Uncle Ron and he remembers Uncle Ron making him laugh, among a million other things that stay in the mind of a very intelligent 5 year old. He understood what I was telling him and seemed ok with my answers, but I have to admit, saying the words...having to break them down to the simplest terms, hit me like a ton of bricks. 

Uncle Ron with Levi (2) and Coleman (5)
I miss my husband. I miss the guy that my nephews will never get to know. I miss my best friend. I miss feeling safe. I miss being a wife. I miss being a partner. Most of all, I miss the way he used to grin at me when he thought I wasn't looking. I am facing some pretty serious medical stuff myself at the moment and I don't have my husband to hold my hand. Instead, I am thinking of who is going to take care of Ron if I have to have surgery. I am thinking of the things I need to get in place. Most of all, I feel alone. I realize I no longer have someone to take care of me. He is right in front of me, but lost to me forever. 

Next month will be 5 years since his first stroke. For those of you that don;t know the entire story, Ron has suffered 29 confirmed separate strokes. They range in size, with the largest being from his last relapse in 2010, it is 3mm. We have no idea how many TIA's or tiny strokes he suffered that didn't show up. Yes, you read that right. 29 separate lesions on his brain confirmed with MRI or MRA. Ron will be 33 next month. Looking at him, you wouldn't even think he was sick. Until you try to have a conversation with him. He recovered physically to about 60-70% of what he was before. Neurologically, he is a pre teen with zero impulse control. He says horrible things he doesn't mean, like a teenager. He can't be left alone for long because he cannot be trusted to do the things he needs to do. He will leave the stove on, water running..even forgets to eat. I am his baby sitter. He will also lie right to your face because he doesn't understand the need to tell the truth. Becoming a caregiver to your spouse is a lot of work and a lot of heart ache. You have to constantly keep your anger in check because they can't help it...they just can't help it.

I miss having conversations. Ron has a condition called conversational apathy. Me just isn't able to carry on a conversation, like he doesn't know the "rules" of how a conversation works. My cats and the dog get tired of having to listen to me talk at them but some days that is better than my heart breaking because Ron cannot answer me. 

If you have gotten to this point, thank you for taking the time to read this. I will close this one out the way I typically do...Please do not take ONE SINGLE MOMENT of your life for granted because it could be flipped upside down into something you do not recognize in a single instant. This moment is all we have that is guaranteed. Live it to the fullest, whatever that means for you. 

Monday, June 4, 2012

Maybe I don't want to be an independent woman...

I have mad respect for the ladies who are independent and don't "need" a man to help them with tasks. I am quite capable of being on my own and taking care of my own stuff. But when people tell me that now I have to learn to do things for myself, all I can think is, well maybe I don't want to. My husband has been my "man" since we were 18. He has always been the one to take care of the "manly" things. I accepted our roles and enjoyed the security of knowing that if something needed to be done, he would handle it. While changing the tire on my car the other day, it hit me just how much my life has changed in that regard. I no longer have a "man" to count on to help with those"manly" things. Someone once told me to look at the positive, now I could learn to be totally independent. Well, what if I don't want to? What if I liked having the security of having someone to help me with the things I couldn't tackle alone. 

The point of this vent post is to say this, if you have someone in your life that gives you that security, please don't take them for granted. 

Yes, I am asking for help again...

Please take a moment to read the fundraiser info and pass it along...Thank you all so much for your continued support!! <3