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


Sunday, May 13, 2012

Happy Mother's Day

I wanted to take a moment to say Happy Mother's Day to all of the mommies.. birth mommies, adoptive mommies, step mommies, mommies to angel babies and anyone who has ever loved like a mom. This holiday is another that makes me remember the old Ron. For those who don't know, I have a 15yo son that I placed for adoption when he was 3 days old. I met Ron shortly after placing my son. Ron and I went through 4.5 years of infertility treatments without success. However, since he and I met, Ron never forgot me on Mother's Day. He always made the day special for me but now he doesn't really understand. It has made this holiday harder for me and for some reason it is even more difficult this year. I can still hear Ron in my head, telling me that I will always be a mommy in his eyes. I miss that. 

I am a proud birth mother. I will never regret my decision to give my son the life he deserves, but some days I miss him. I am so proud of the young man he has become and grateful for the letters and pictures that I have received over the last 15 years.  Mommy loves you Caleb Mikael! 

Be sure to remember ALL the mommies today. ♥

A song for my son, Caleb Mikael

Tuesday, May 1, 2012

Random Observation for Today

So, today I was at the doctor and there was this sweet elderly couple sitting next to me. The elderly man proceeded to pick up his wife's purse, help her to the door and hold it open for her. I realized in that moment that I wouldn't get that moment with Ron. That we wouldn't be growing old together. That I no longer had my best friend to hold my purse, or hold the door, or do any of the small, insignificant things. So, I sat there in the doctor's office, thinking back to all of the "little things" that Ron doesn't do anymore. I won't bore you with too many examples, but I did want to share a few. When we were going through infertility treatments, I suffered from pretty severe migraines. Ron would brush my hair for hours to help with the pain. He was the only person in my life to remember me every Mother's Day. Of course I wrote this to try to get a message to my friends. Please, do not take one moment for granted. Even the smallest, most seemingly insignificant things, hurt horribly when they are gone.

Thursday, April 12, 2012

Another thing I took for granted....

Would you know what I meant if I asked you how it would be to live with a person that is unable to feel emotions? Well, let me try to tell you. It sucks. Due to the damage done to my husbands brain, it is impossible for him to "feel" emotions anymore. Occasionally he gets angry and sometimes he might smile a little, but for the most part, nothing. He can't feel love, or excitement or simple joy anymore. . It is a horrible thing when the loneliest place in the world is sitting next to the man you have been with for the last 15 years. I hate the memories...because even tho he still has most of his memories, he no longer has the feelings that go along with them. He doesn't remember what it felt like to see me walk down the aisle. He doesn't remember what it felt like to hold our nephew for the first time. You never realize how important things are until they are gone.

Another effect from the strokes is the drastic changes in his personality. He once was so kind and sweet. I always felt so safe in his arms. Now, his hugs are cold. Even when he holds my hand on rare occasion, it isn't him. He is an asshole 80% of the time for no reason. He says awful, hurtful things with no concept on how bad they hurt. I have developed a pretty impressive thick skin over the last 5 years, but there are still days that it tears me into little pieces. He is so different. The man I married, my soul mate, died in August 2007 and this new guy took his place. The changes weren't as noticeable in the beginning, but with each new stroke I lost more and more of him until there is little, if anything, left of who he was. I am grieving for my husband and for the epic life that we had but I can't properly grieve and move on because he is still here. That may sound harsh but those of you have been in anything similar with brain injuries, you totally know what I mean. I do pretty well, holding everything together with limited means. but some days, like today, all I can do is cry. I miss him so much.

His bad days are the hardest. He was always the strong one. He was always the one taking care of me and our life. He held me together. Now I watch his every move, waiting for signs of a relapse. It is exhausting. Watching him suffer on the bad days just tears out a little more of me. Anyone who has watched someone slowly fade away will understand what I mean. I feel helpless. I feel weak. I feel jipped. Don't get me wrong, I am grateful every day that I was one of the lucky ones. I met my soul mate at young age, many people never meet theirs. But I wasn't ready to lose him. I wasn't ready to be done. I wasn't ready for this. Before you say anything, I KNOW THAT NO ONE ASKS FOR THIS. However, that doesn't change the fact I am sad and pissed off that I lost my best friend, the other half of me.

I think that is enough for now.

Saturday, April 7, 2012

Little bit of an update and a little bit of rambling

I have been horrible about updating this blog so here is a quick update. We just moved to a much smaller apartment. It isn't bad and Ron is finally settling in. Nothing really new with his health. His personality changes are pretty drastic from this time last year. His doctor believes these changes are results of the damage done to Pons portion of his brain. So each day is a learning experience.

This blog entry has been swirling around in my head for several days and I finally decided to try to put it all together. I met a new friend last week who is in a very similar situation as I was when Ron first got sick. I remember being where she is right now and I hate it for her. Only people who have been in a situation with a brain injury, be it stroke or accident, can understood the really horrible thoughts that go through your head. I have few people I openly discuss my own feelings with because I am ashamed of the way i feel sometimes. My new friend has given me courage to own up to at least some of the emotions. Write them down and let them go. The reason being, for any 5 people who are shocked or disgusted by what I say, ONE person might read this and not feel alone like I did. So here we go. I will warn now of my use of poor grammar curse words and poor punctuation.

Where to start. Well, I am pissed off...a lot. I try really hard not to throw myself a pity party a lot but I am human and it happens. I get so angry with Ron for being sick..I blame so much on him and then I get disgusted with myself. It is a vicious cycle. It has taken me a long time to get to this point in the acceptance process. He has been sick for almost 5 years and I have just really started to have positive days again. Most of that being because I am finally taking care of myself. I have bipolar disorder and since Ron got sick I have also been diagnosed with a list of things. BiPolar Disorder, Severe Generalized Anxiety Disorder, Post Traumatic Stress Disorder, etc etc. My bipolar has been manageable most of my life for the most part with medication. I've had issues in the past because the bipolar was never properly treated but I was doing decent. I have been very sick for awhile now. Ron getting sick totally flipped my life upside down. The one person I had who loved me for me, was gone. Yes, I know he is still physically here but the man I married no longer exists and I have painfully watched almost every tiny sliver of him leave over the last 5 years. Ron was the center of my universe. People do not realize that I have no clue who I am without him. We have been together since we were 18. Almost 15 years. I don;t know how to be an adult with out him. Ron was my best friend. I was fortunate to meet my soul mate. A lot of people don't get that. Now I live with the body of my soul mate but the mind of someone totally different. Some days I miss him so much I cant breath.

The days I get to missing him like that are the worst. I get so stuck in our past. We had an epic life. It wasn't easy. We struggled through a lot including putting Ron through the fire academy and medic school, infertility treatments and working opposite shifts when he started at the fire department. It was no cake walk but we had an awesome life because we had each other. Ron loved me, unconditionally and taught me how to do the same. He would have done anything to make me happy and always put me first. I do not take what we had for granted. I try to tell people all the time to just take a min and realize what they have, right this moment.

It breaks something in a marriage when one person becomes the caregiver of the other. Ron is totally dependent on me to mange his life. Physically he can do most things for himself thankfully, because I wouldn't be able to care for him. Not only am I a mental case, I have a torn disc in my back. Yeah, it sucks having no insurance. I am grateful for Medicare because otherwise Ron would not be getting the proper medical treatment. I don't look at my husband the same way. Not just because of all of the changes in his personality but because of me having to do so much for him. I realize this has made me a very bitter person and I struggle with that everyday. My husband is almost 33. I shouldn't have to pick up for him, or tell him to brush his teeth , or to shower, or to use the restroom. I shouldn't have to apologize for his horrendous and embarrassing behavior. But I do. I hate having to defend him to others and explain why he does the things that he does. At the same time my heart breaks just a little bit every time I know someone is making judgments against him or misunderstanding him. I have become the overprotective caregiver of a mentally disabled man and I make no apologies for that.

I have anger with our old "friends" that I work daily to let go. This journey with Ron has taught me a lot about people. It makes me sad sometimes when I realize how few friends we have left. No one wants to take the time to understand him and that is such bullshit. What happened to all that Do unto others stuff? How would you feel if someone who claimed to love you couldn't be arsed to learn about your condition? How would you feel if suddenly your circle of friends decreased dramatically? Let me just tell you, it sucks. I know it is a horrible thing to say, but for those reasons I am actually glad that Ron's brain is as broken as it is now. He doesn't cry about losing everyone anymore. His feelings of disappointment are fleeting. I am thankful for that.

I get tired of being told what I "should" do. Why don't I put him in a home? Well, here is why. Ron will only take his meds for me. Argue the point if you like but 2 of his relapses prove this point. SO I have two choices, put him in a home where he dies within a couple months since he will not survive without his medication. Or I keep him with me and learn to handle his personality changes and outbursts. Why don't I get in home care to give myself a break? Well that would be because strangers make Ron very anxious and being around strangers without me is not a good thing. It would take days to get him calmed down. SO my life is on hold, watching him for signs of a new stroke, taking care of him, worrying about if he will wake up. I accept this as my life because of who he was was. Ron is my husband. I made a promise to make sure his life was what HE wanted. So I do my best to do what I can to make that the reality but my acceptance of this duty does not mean that I don't struggle with it and have really bad days.

Conversation is one of the things I miss the most. Ron has something called Conversational Affect, which means he has trouble carrying on a conversation and it is almost impossible for him to start one. I miss talking to him. He also has something called Pseudobulbar Affect which causes uncontrolled laughter which makes it difficult to have any sort of serious conversation. So when I get with people I tend to talk too much and act uber happy because I don't want to lose more friends. Yeah I know it sounds pathetic and I am working on but there is always this little voice in my head that thinks that I am the reason my friends left. Realistically I know that most of the people who are now missing from life made the choice to leave me at my lowest point. Yeah, my brain goes to all sorts of crazy places.

I miss companionship. I miss having someone to hold my hand or give me a hug. Ron can't really do any of those anymore and when he does they are cold...and that hurts more than you can imagine. Ron was my safe zone. With him behind me I could do anything and just holding his hand totally grounded me. I miss being appreciated and feeling loved. It is hard to make people understand that Ron's emotions don't work anymore. Not like the rest of us anyway.

Ok, I think that is enough for now. Thank you for reading if you got this far.