Advocating For My Wounded Warrior (Part 3)

I’m sorry to have been away from my blog for so long. It’s been a very, VERY, busy year. Work has been kicking my butt and by the time I get home I really don’t want to do much. We’ve had some other things kicking our butts too, but that’s another story (click to read more). I’ve also taken on a new hobby that incorporates some “me time” along with my love to share smiles and helping veterans. I joined Pinups For Patriots! YAY! Go me! If you want to check out what I’m doing in the Pinup world, please like my Facebook Page.

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Anyway, what I would like to talk about today is the fact that I haven’t stopped advocating for my husband when it comes to his pain and the VA. In fact that is also another part of my busy life. So, last year in October was his last civilian Botox treatment.  He was due for another one in late December, but you know how the Holidays always throw off everyone’s schedule. So we went to schedule it in January. For the past 3 years he has been having this done, every three months, all we’ve ever had to pay for was the doctor’s visit. The Botox was covered. Well, 2016 rolls around and not any more. We will have to pay $1000 every 3 months in order for him to get his Botox. We just couldn’t afford this.

So I asked him to ask his Primary Care at the VA to refer him to VA Neurology. He had that appointment on the 3rd of February. When we explained the conditions, he said, “No problem. I can refer you to the Pain Center for that.” We also brought up the fact he wanted to try Ketamine Infusions. And the doctor said he would include that in his referral and we could discuss it at the Pain Center.

A month goes by and we never heard anything. We logged into MyHealthEVet every so often to check for an appointment. Called the VA Pain Center and they said they never received a referral. He finally found out that on the 4th of February, a different doctor went through his records and saw that he was getting care outside the VA for Botox and revoked the referral.

Joy.

Ok, two months have gone by since the original Neurology appointment. He had his first visit with the VA Pain Center, his consult, on May 6th. May 6th! And even though he’s been there before he STILL had to go through his history. Oh and it’s all right there in his medical records! But they decided to start from scratch. He had to go through a “test” procedure with steroids and lidacaine, something that he’s gone through so many times before and it didn’t work. It was documented in his VA medical records that it didn’t work. Yet they wanted to do it again since “it’s a new procedure.” Um, no it’s not. TheHubs explained to the doctor the exact procedure he went through the last time he was there. It was the same procedure the doctor was explaining to him. But, let’s try it one more time. That happened on July 5th. And guess what?! It did nothing for him.

Ugh.

So we had to wait even longer to get that Botox injection. His next scheduled appointment was 3 October. This was when he was to have his Botox. Even though we brought his civilian doctor records of the last 3 years worth of injections, the VA only does half the dose at double the time. Oh this is so frustrating. During this appointment we also found out that the VA Pain Center is not trained to do most of the areas he has been getting Botox injected into, which happen to be his worst areas. So they are writing in his notes that he needs a referral to go to Neurology to do that. We also mentioned Ketamine Infusions. They said they have done a few of those in the past but he needs a referral for that as well. The nurse instructed us to contact his PCP to get that referral.

We sent a secured message to his PCP on the 4th. We get a reply on the 11th stating that Neurology is submitting a referral to the Choice Program (where he can see a civilian doctor). Of course we haven’t heard anything. I call up The Choice Progam and they don’t have an authorization letter for me to speak on his behalf, even though we’ve sent it in multiple times over the years. Apparently they are not the VA, but work with the VA. Ok. So I finally get to talk to them and they don’t have the referral yet and it usually takes at most 3 business days to get it.

We sent another secured message to his PCP and the nurse instructed us to contact the VA Neurology. VA Neurology knew nothing about a referral. They said his Primary needed to submit the referral to the Choice Program. Emailed his PCP back, and they said, no, Neurology needs to submit the referral.

Oye ve! Can we please stop this merry-go-round? I want off!

When we emailed the PCP back, the nurse said that she will “forward this to a specialist,” whatever that means.

So, I’m still fighting for my husband for him to get the care he deserves and hopefully some relief from all the pain. It breaks my heart to see him balled up in bed, ripping at his hair, squeezing the crap out of his neck, nearly in tears all because of the pain.

This was taken outside the VA Pain Center when he went in for his procedure…the first time. I just love it!

Related Articles you may like:
Advocating for My Wounded Warrior (Part 2)
Advocating for My Wounded Warrior (Part 1) 
Our Story

PTSD, TBI, Sex and Relationships

After 26 years of marriage, we’ve only just now started opening up more, having conversations about these very topics. I have not been able to put them into words yet. I am still processing. But this….this post explains it all. I will return here and re-read and re-read until I can understand it better. I don’t think I can fully understand what goes on in his mind. I don’t think he ever wants me to, either. But this blog post helps me tremendously. I do hope it helps you too.

Life After War

You came back different. Changed. You can’t really describe  it, but you’re not yourself. Not who you used to be. You’re angry. Blow up at stupid shit. Lack other emotions. Feel numb. Tired. Disinterested in stuff that used to be interesting. Tense. Sleepless. Have nightmares that scare the hell out of you. Forget shit. Can’t focus. You miss your buddies. Miss the war. Miss the ones you lost. Miss feeling like you used to feel. Before.

He came home. Different. Instead of you being able to step back and let him take over sharing the household, childcare and financial responsibilities, you have to take care of him now, too. He’s angry. Silent, except when he’s mad. He can’t remember shit. Seems unmotivated. And distant. He’s up all night; keeps you up all night. Spends more time on the sofa than in bed. Keeps loaded guns around the house. Is edgy…

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The Little Things

I realized that I have always been the one to love the “little” things. Those small tokens given to me by friends and loved ones are the ones I hold dear. Not the obligatory Christmas, birthday, or Valentines gifts. No, it’s the ones that come “just because”.  Those are the ones I cling to. The ones I find tucked away in a drawer or a box after I’ve forgotten about them. But I never throw them away.

I have a tiny crocheted bear that was given to me by a very close friend when I was in 9th grade. I found it again a few years back when I was going through my boxes I had all my England stuff in. I have notes from friends we passed back and forth to each other in school. I even have a silly little piece of paper with a “I love you” note from TheHubs from when we first got married tucked away in a binder I used to carry. I have a 3×5 card from him that he wrote telling me not to worry because I will be home soon. I have it pinned to my cube wall. Another note on my wall is from my son when he was 5 and a poem he wrote me when he was 7.

It’s always the small things that mean so much!

A few years back I was cleaning out the mess beneath my bathroom sink. But when I pulled out my basket of hair stuff, I found a card my husband had given me, I don’t know when. I just sat there on the floor of the bathroom, reading and feeling the love. Now I carry it around in my bag to work so when I need a reminder, I just pull it out and smile.

My husband is not much of a wordsmith. I know that. But sometimes just the simplest of words can really hit me in all the feels!

Yup, you guessed it, it made me cry.

Of course I told TheHubs I found it and what it said. And of course, he said, “Absolutely true. I will never regret asking you. I love you.”

Then, a few days, maybe a week later, TheHubs showed me a video on YouTube. I’ve heard the song before and really like it. But TheHubs hadn’t heard it before. He said he heard it on the way to taking TheBoy to school and he thought of me and it made him cry. It was how he felt about me.

Again, the tears flowed again.

But all these tears are happy tears. They are the little things that mean so much to the heart and to the soul. They are the positives we all need to find in our own lives. I am so glad to have found them and to share them with you. Because I know, if I share them, someone out there will be thinking about their own little pieces of positive. ❤

I wrote this letter to John Legend thanking him for his song, All of Me, around out 25th Anniversary. However, I do not know how to get it to him. I tried to win his Valentine’s Day Sweepstakes he had last year where he auctioned off a chance to have him sing at your wedding. While it would not have been our “wedding,” we have always wanted to renew our vows on our 25th. With our life, his pain, and always the lack of money, we never got a chance to have our vows renewed and had a honeymoon. I would have so loved for Mr. Legend to sing this for us. But I am so happy for the lovely couple who did win it. If you have the time, click-through to watch the video. It was just beautiful!

I do hope that one day he WILL read it and understand the depth of the impact that song had on us.

Dear Mr. John Legend,

I wanted to take the time to write you a letter regarding your song, All Of Me. I’m sure you’ve heard many a story about this song and how it is so incredibly perfect; but I’d like to share with you my story and how it has impacted my life.

The first time my husband heard your song, really listened to it, was right after he dropped our son off at the school bus stop. He told me he sat there, parked, with tears streaming down his face. When he told me this, it brought tears to my eyes.

Our story is much like a fairy tale, at least in the beginning, maybe even now but in a different from normal way. It’s not really love at first sight so much as two souls, destined to be together, finally finding one another and holding on. Five days after we met, he asked me to marry him. A month later we were married. December 22^nd we celebrated our 25^thanniversary. We’ve beaten so many odds, so many things that would have torn even the best couples apart, to get where we are today.

I’ve been paranoid since day one that he’d leave me. Because my father was in the Air Force and we moved around every four years, it’s been difficult to keep relationships – friendships and boyfriends. They either failed after a period of time or they disappeared into the wind. And because my upbringing has shaped my view of myself, I’ve always blamed myself for their failing. For me, it’s been hard to accept that he would be around so long. To this day I still have sad dreams where he leaves me. I never truly understood just how much he loves me.

My husband is also a disabled veteran who suffers chronic migraines, chronic neck pain, PTSD, and TBI. Before we had the diagnoses, before we had it managed, we didn’t know how to communicate. I think being a man is hard enough when our boys are raised not to show emotion. It’s a sign of weakness. But to be a soldier and to have emotional issues is a hundred times worse. They tell the soldiers to “Buck up. Charge on. Embrace the suck. Deal with it. Get over it.” But they never tell them how. They are left broken, not only on the outside, but on the inside as well. So when all these emotions, all these fears, and nightmares manifested inside him, things didn’t go well in our house. It didn’t help not knowing what the problem was and all the medication and medication changes really messed up his brain chemistry, too. He never knew how to tell me what was going on in his mind. Most of the time it came out through anger – not at me; but I always managed to feel it was my fault. He never knew how to express himself without saying something wrong. So he kept it all bottled up inside him. Silence killed me. I always imagined the worst. But I loved him. That’s all I could do.

It wasn’t until he sought help that he started learning how to express himself and communicate. In his learning he began teaching me. That was about five years ago. He has opened up to me about what has happened. I doubt I will know everything. But it doesn’t matter. We are communicating and learning. It is a never-ending education. One in which we both must practice.

I think the last two years have been incredibly hard. There was a time my husband rationalized. Because he always feels he is a burden, because his depression has affected me and our son greatly, he felt that I’d be better off without him. He didn’t tell me this at first. I had no idea. We were going through another medication change and I just thought it was his body adjusting to it. I never saw any signs. He wore his mask well. He only told me about it after his epiphany and after he spoke to his doctor about it.

Honestly, it scared me. But I was grateful he didn’t follow through. Lord knows we have enough medication at his fingertips that it would have been so easy for him. But he didn’t. And for that I thank God.

I thought I buried it so I could move on and continue doing what I always did. However, it must have hidden in the darkest of shadows, poking at my subconscious, taunting me because by Christmas 2013, I had fallen into my own dark abyss with no light to guide me through. I thought I was alone, that no one would understand what I deal with on a daily basis. To look at my husband is to look at anyone. He’s even had someone remark in a snide way, “Well, you don’t look disabled.” You cannot imagine how deep this cut him. But he put on a smile, a mask, and said, “Thank you.” To this day, it still eats at him. As for me, when I have had to decline invitations to social gatherings, and explain that we cannot come because of my husband, potential friends’ eyes would glass over in complete incomprehension. After a while, we lost all our friends, and any potentially new ones would stop asking. We were alone. I was alone.

I’ve tried to live my life as positively as possible. I learned to surround myself with positive people and cut out the negatives during my husband’s Kosovo deployment in 1999. I’ve always wanted to help other people find their own positives when I was growing up and I’ve also tried to share that with people on my blog. However, it wasn’t until last year that I realized I need to cut out my inner negative in order to keep my positive life going. Three years ago I came up with the phrase, “Find the positives, no matter how small, in every situation.” I tried to hold on to that when I fell into my pit last year; but the demons screamed louder and blackened the light.

By the time I couldn’t stop crying, I knew I had to seek help. I researched and found a group of military/veteran caregivers and took a chance at their Caring for the Caregiver seminar. It was definitely and eye opener and set me on my path to recovery. My year of healing began January 2013 and will continue the rest of my life. Now, a year later, because I took the time to heal, I can now help my family again.

Being positive is one of the hardest things to do, especially in the face of hopelessness. To me, though, it is the only way to get through life. I love your positivity you exude in your work and your life. You truly are an inspiration. Your release of All of Me hit it big on my 45^th birthday. I believe it was a message.

While you wrote that song for your wife, you’ve given my husband a voice to express his feelings for me. While I never truly comprehended the depth of his love, 25 years later, I am starting to understand. Every time your song plays, he tries so hard to sing along. He grabs my hand when I’m near, looks at me when I’m not so near. His eyes glisten and his lips tremble. Most times a single tear will fall. My heart is filled with so much love. I still don’t quite understand, but maybe I’m not supposed to. Maybe I’m just supposed to accept that he loves me so deeply, that we were meant to be together until the end of time, that we are two halves of a single soul merged together forever.

Last week, my husband was sitting on the edge of the bed, listening to your song again and he cried. I hugged him and cried with him. And then he told me that he tried so hard, and for so long to memorize that song for me so he could sing it to me at our 25^th anniversary dinner. His traumatic brain injuries and PTSD make it near impossible to commit things to memory anymore. It frustrates him to no end. But this, this just made him sad and angry. He just couldn’t remember the words. Not only that, he couldn’t get past the first verse before he started crying again.

Because we got married so quickly, because we didn’t know each other well when we did get married, and because the military has kept up hopping around since, we didn’t have a honeymoon let alone an “our song.” Now, 25 years later, with the greatest of thanks to you and the love you have for your wife, as well as your gift of poetry and song, All of Me is now our song.

From my heart to yours, thank you.

Related Articles you may like:
You Are Not Alone
The Secret to Marriage
VA Appeal Update #6
Advocating For My Wounded Warrior
John Legend – You & I (Nobody In The World)( LIVE from Citi ThankYou)

When The Fog Burns Off

Several weeks ago, my husband called me while I was at work.
Nothing unusual about that.

However, this time his voice was broken and quiet and he said, “Something happened.”

My mind raced within a microsecond of what could possibly have happened. My throat closed. My stomach flipped.

Before the sobs took hold and the line went dead, he managed to tell me of the memory that the fog had shrouded from him since the incident happened in Kosovo back in 1999.

My own silent panic raged inside of me while I dropped everything at work and sped home. He was no longer answering the phone. The more I tried, the faster I drove. Even if we had someone who could go check on him, I knew he was in no state to answer the door. Had I called 911 and had a sheriff go out, it probably could have made things a thousand times worse. I just had to get home as fast as I could.

I already had a plan in my head if I were to get pulled over by the police for speeding. I would have handed them my driver’s license and told them to meet me at my house because my husband was in full PTSD meltdown and I needed to get there as fast as I could. (Honestly, in hindsight, I probably should have called 911 to let them know what I was doing. Not sure how that would have ended though. Would they have come to the house? Would it have made TheHubs worse?)

Once I got home, I found him huddled under the covers, won’t come out from under them. I called his VA doctor and between me talking with him and the nurse talking with him while I held the phone to his ear, we finally calmed him down.

But that memory of his time in Kosovo, that memory that his brain had protected him from, still lingers.

PTSD never gets better. No amount of therapy or drugs can make it so. I don’t care what the VA says. PTSD is something that will haunt the person for the rest of their lives. They, alone, are the only ones who can manage it. Living with someone who suffers PTSD is not so haunting, but it does affect everyone it touches in some way. Those of us who live with, and love, someone who suffers with these demons has to learn to adjust. And the only way to learn is through communication between everyone involved.

I am blessed that he is comfortable enough, trusts me enough, to share with me his demons. But I am also cursed with the knowledge of those demons and knowing that I will never be able to take them from him.

 

 

Related Articles you may like:

Our Story
PTSD or Moral Injury
Anxiety, Depression, and Secondary PTSD

Goals for 2016

Resolutions have always set me up for failure.

I’m not very good at keeping at things that are solitary. Even when I was little, I found ways to get out of doing something I didn’t really want to do. I usually gave up when the expected results were not met, especially if it were not near immediate results.

I’ve been good at not wanting to give up writing. That’s the one thing I vowed never to give up, especially after I re-found my dream a few years back. However, the last two years of “finding myself” through this blog, as well as taking care of and understanding my situation with TheHubs, well, my fiction writing has been put on hold.

With the new job duties I was given back in August of 2015, the stress of that has left me utterly exhausted on top of everything else I have to do. The holidays were rough, but I had time to relax a little while working from home and trying not to work on vacation. Over this time, I came up with a few goals I would like to see myself achieve in 2016. If I don’t complete them, that’s ok. The only thing I want to do is make progress.

I came up with this saying a few years back on my writing blog, to help me get (and keep) my focus. Because, really, it’s all about the progress, the journey, not the end result. I have to retrain my brain, which is an ongoing process-one in which I fully intend to keep until my dying breath.

So, forget about the words. This can be attributed to any goal you wish to set. If you’re interested in how I came up with this Golden Rule, go ahead, click the image. 😛

So, my goals for 2016 are as follows:

• Remain Positive. Keep looking for the positive in every situation, no matter how small. This is very important, and the most difficult. But it’s the only way I can survive.
• Practice patience, especially when it comes to the VA. I also need to remember to do this with my family as well. When I get stressed, I fail. So I need to keep reminding myself.
• Keep up with placing my “Operation Beautiful/Positive” Post-it Notes for everyone to see. Sharing is caring. Being the reason someone smiles is a wonderful feeling, even if you don’t know who it is, or even IF they smiled. The other idea is that you never know who NEEDS it at that moment.
• Make time for writing. Do, or do not. There is no try. My 2nd novel has been on hold far too long.
• This one will be my most difficult, I fear.
  Since August, with my new position, I’ve been dealing with a lot more stress at work and very little time for my family’s needs. So, I hope to not let a certain someone/situation at work bother me like it did last year. I’m already on my way to accomplish this since that someone/situation did try to get under my skin earlier this week and I didn’t let it bother me. I think I will utilize my white board at work as a tally board.

What do you think? Good? Should I add more? I’m open to suggestions.

What are you celebrating this week? 

Thank you to our lovely host, Lexa Cain for taking over and continuing the Celebrate the Small Things blog hop. I would also like to thank her co-hosts, L.G. Keltner @ Writing Off The Edge and Katie @ TheCyborgMom – without them, I’m sure this would be a daunting task!

To be part of this blog hop, all you have to do is put your name on the linky list on Lexa’s Blog, and then post every Friday about something you’re grateful  for that week.  It can be about writing or family or school or general life.  This is the funnest and easiest blog hop ever! (Originated by VikLit)

Related Articles you may like:
Been A While – Celebrate the Small Things
Pain – Celebrate the Small Things

Where Did the Magical Season Go?

So, can this day/week/season hurry up and be over with already?

Every year I hide behind my words – <Insert Holiday Title Here> is nothing but a commercialized guilt trip and we should celebrate love, kindness, thankfulness, gratefulness, family, friends, and whatever else, EVERY day.

Yeah, just words. Sort of.

In all honesty, I have always disliked many holidays. I dislike Valentines Day, Mother’s Day, Father’s Day, Grandparents day, Boss’s Day, Administrative Assistance Day, and any other day you can think of. The truth of it all is, it’s a holiday that people adopt so they can party (like St. Patrick’s Day, or Cinco De Mayo), or it’s a day that all the retailers try to lure you in with “savings” to get your money or guilt trip you into buying something for your love or your child and if you don’t, you suck.

And it seems to be worse around Christmas.

My heart and soul must live in a different time period, especially around Christmas time.  The magic of the season is everything to me. You know what I mean. Old movies like HOLIDAY INN or WHITE CHRISTMAS, or the kind you see in a Thomas Kinkade painting, and all the stories of miracles happening around Christmas. A quaint little neighborhood. A blanket of virgin snow. A single trail down the center of the road that leads to the horse-drawn carriage. Christmas lights and decorations lining the streets and warming the houses. Everyone smiling and wishing passersby a Merry Christmas, helping those who needed help, and giving a small gift of friendship in any form. Friends and family circling round the fireplace drinking hot apple cider, singing Christmas carols, and sharing in the warmth of the love. Every time a bell rings, an angel gets its wings.

Oh to see the world through my childhood eyes again.

To set the record straight, It’s not just about the lack of presents. With all due respect, presents under the tree is only a tiny part of that ideal Christmas image in my head. With each passing year, though, the magic of the holiday seasons grows more distant and unattainable. Decorations, still packed away in boxes stored in the garage, are left untouched for years. The lack of cold and snow, does nothing to put me in the mood either. I have no motivation. And when I do, I do it all alone. And now, while the desire is there, that little voice inside my head says, “what’s the point?”

I no longer like going out window shopping, just to enjoy the decorations or looking for ideas for my own house. There are way too many people. It would be ok if everyone was happy it was Christmas time. But now, everyone is so rude, and a thousand times worse during this season. It spurs anxiety in both TheHubs and I.

PTSD and Pain have ruined this time of year for me. TheHubs only feels 3 emotions: rage, despair, and nothing. He doesn’t get into decorating, socializing, or celebrating anymore. This, in turn, makes me not want to put in the effort. Maybe it’s the lack of UV light, the drab days, the lack of color all around, that adds to the depressive state. They do talk a lot about this time of year being worse for depression. So maybe that’s part of it. But I also know that seeing your loved one in constant pain, suffering his demons, and hardly ever seeing the smile on his lips and twinkle in his eye, well, you just let it slip through and wish it were all over so you can get back to the everyday life without seeing everyone else’s Christmas cheer.

This year has been especially hard, making this holiday season a bit worse for wear.  We’ve been through some seriously trying times. Communication is the only way to get through it. And while the PTSD Rage Monster flares bright, I wondered if we’d ever get back to that point. But we did. We both opened up. We both are constantly working on our communication. But while you’re smack in the midst of living the hell, it is hard to see the light. There were several of these times throughout the year. More than we’ve had in a very, very long time.

And then there were all the medical issues.

For me, luckily, this year was pretty simple. Just a few follow-ups with my Psychiatrist and adjustments to my meds–which at this time, I am not going to up them because of the price. It’s like two completely different prescriptions, even though it’s the same medication. One strength dose in the morning, a different one in the evening. But, it’s on a higher tier in the formulary so I have to fork out a bit of money for that. (And don’t even get me started on next year’s medical insurance.)

When TheBoy started school this year, he also started complaining about his feet hurting. It wasn’t until about a week in that it got so bad he called us from the nurses office saying he couldn’t walk anymore. We took him to a podiatrist and that’s when we found out he has incredibly flat feet (like his father) and loose tendons (like his mother). Luckily, the doctor had a quick and permanent fix, giving him an arch and correcting his feet to hopefully not have pain. It would require surgery on both feet. And now was the best time for him to have it since he’s still growing. He’s already had one surgery, and his second is on Dec 8th. (if you want to read about this condition, you can see the pictures here)

And then we found out he needed braces. UGH!

On top of all this, we also have to foot the bill for what the VA doesn’t cover for TheHubs. All his medications, and the neurologist he’s been seeing for a little over 10 years. His Botox injections, and pain medications. He also had surgery in September to help correct his severely deviated septum, which was supposed to help his apnea and we were hoping to alleviate the positional pain that came from sleeping since he would now be able to breath out of his nose while sleeping on his belly. It helped somewhat, but nothing to write home about.

So, our bank account has been pretty much wiped out — of course adding to my already discouragement for this season.

So when TheBoy comes to me, without prompting, and says he would be fine with nothing for his birthday and Christmas, an instant surge of pride is quickly replaced with a great sadness because I know with all these medical and dental bills that are going on I cannot afford to get him something, or anyone else either.

This season is about giving. And I do so love to give, whether it be a present, a smile, a hug, a positive thought. I am happiest when I am giving and helping people. I am happy making others happy. Sometimes, though, I would love if everyone else felt the same way I do.

When I started writing this post, it was so very negative. I couldn’t see the positive, and wondered if I would ever feel any Christmas spirit again. After getting it out, admitting it, I realize that just like being positive in everyday life, being happy on Christmas is a conscious decision. So today, I am making that decision – the decision to try to enjoy the season and not focus on my dreams.

I am going to try to make other people happy. Maybe it will help me get back into the spirit of the season. If I can buy someone’s coffee while I’m out shopping, or find a homeless vet who hangs out on the corner near the mall and give them $20. Or get back to leaving my Positive Post-It Notes around town while we are out and about…*IF* we are out and about. I really want to be able to share the positive and the happy and give someone a smile. The more people who see kindness, maybe it will spread and the rudeness will diminish?

I honestly believe in karma and “what goes around comes around”. I just have to be patient. And patience is not my best quality.

One can only hope, though.

So I am going to ask you to do the same. Maybe it might help you too. Be kind to everyone. You never know what their story is.

Be kind. Smile often. And spread the happiness.

If you’re willing, I would love to hear your stories as well. Let us all feel not so alone, especially during this holiday season so we can have a little bit of light in the PTSD darkness. Love you all.

Related Articles you may like:
Holidays
Christmas 2014
The Secret to Marriage
Finding the Positives

Present – Part2

In April, I wrote about being present. While I still struggle with the need to fix and make him happy, I am also seeing just how much being there has been a great help to him. It’s a constant struggle. But always, I must remember that single, solitary word when it comes to him…
PRESENT

Last week, I had a very big eye opener. It was quite coincidental when an 18-year-old Australian Model’s story went viral. I was very moved by this article. She had an epiphany and spoke the truth about how she lost herself in social media, how it consumed her identity, and made her so unhappy. It also woke me up to my own problems with social media. But this was only the beginning. My friend, Cheyenne, also posted her response to the model’s article. Like I said, it was coincidental because that same week, TheHubs came to me about how much time I spend on social media and how he feels neglected because of it.

I had to re-evaluate the time I spend on social media.

Because I am a caregiver, I don’t have the luxury of in-real-life friends. My friends live in my computer/phone. It is my connection to others outside of work and my home. I really don’t have friends that I hang out with. Sure I have a few friends at work. But our external interaction is null. So I rely on social media to keep up-to-date and in contact with my friends online. Over the years, we’ve lost all our friends due to his chronic pain, migraines, PTSD, and anxiety. He used to be our friend-maker. I’ve had to learn how. But, since no one understands our situation, his pain, his anxiety and PTSD, well, people only accept so many nos until they stop trying. So, I rely heavily on social media to have friendships.

Being present isn’t just about being physically there for him. It also means being there mentally. Ever since I got a new position at work that requires more responsibility, I’ve not had any down time where I could actually take a break, let alone eat lunch on time, so my social presence has been null while I worked. On one hand, this is good because I am not bored and I am doing my job, despite the drama that stems from those I work with now. On the other, though, I catch up on social media when I get home, I’ve neglected my writing, and now, I find out that he feels neglected, too.

So when we had our discussion about how much time I have my nose in my phone and not paying him attention and after I read that article about the model’s change of heart, and then my friend’s response to it, I knew I needed to take a time out.

It’s been hard to keep that phone off while I sit back and watch something TheHubs loves but I just don’t. It’s hard not to pick up the phone every few minutes to see what has been posted recently on Facebook or Twitter. I’m not 100% there yet, but I think I am doing better. I NEED to do better, for him. I need to be present, in every way possible. Because, when we stop being present, their hope fades, their demons rise, and they start listening to them again.

I’m not gone. I’m just a little less here. 😛
I hope you can remember all this, too.
Be kind to yourself so you can be kind to others.

Related Articles you may like:
Present
Unworthy
Overwhelmed
Anxiety, Depression, And Secondary PTSD
You Are Not Alone
My poem about depression and hope, entitled Pieces

Been A While – #CelebrateTheSmallThings – 23 Oct 2015

I love finding all the beauty and positives despite the tempest that is our lives. ‪#‎bepositive‬

It’s been a while…too long, since I’ve been here to update my blog.
I miss it. Terribly.

You see, sometimes, life gets in the way of the things you want to do. For caregivers, though, that seems to happen a lot more often than not.

These last three months for me have been extremely stressful. My position at work was taken away because it was no longer needed. So they found me a new position. I had to learn the job and then, because I am a fixer, I am now finding processes that will make everything work smoother. However, the push-back I am getting, or rather, the lack of any movement has been causing me undue stress. I’ve brought all my concerns up to my team lead, but I feel as though I am receiving lip service. Nothing has changed.

Not only that, but I have been introduced to “man drama.” I did not know men could be worse than the women I’ve seen in my lifetime. Oh boy. So add that to the stress.

And then, there’s TheHubs’ pain levels. He went back in for his Botox treatment for his neck muscles that are in constant lock up. However, we’ve been noticing that there are different muscle groups that lock up each time he has the procedure done. He asked for more this last time. His neurologist told him that he’s at the maximum allowable dosage for the Botox injections. If he were to receive more, or more frequently, then he could build up anti-bodies which will then make him more tolerant to its effects. But, they did work out that rather than giving him the injections in the same locations every time, the doctor will only put the injections in the muscles that are locked up from now on. So we shall see how that will go.

TheBoy started school mid-August. A week later he began complaining that his feet hurt. A week later, he couldn’t walk without pain. We took him in, had x-rays and found that he had extremely flat feet and very loose ligaments. He had been in braces on both feet since. Last Friday, he had surgery on one foot. It is an amazing procedure, I never knew existed!

Basically, there is a small piece of metal, much in the shape of a bullet with grooves along the side, that is inserted in between the hollow space in the ankle where it nestles in and prevents the overpronation problem, giving him a sturdy ankle and an actual arch.

This is basically what the before and after will look like for TheBoy

So, what little things am I celebrating?

• I’m happy the surgery went well, that he’s in very little pain, and that this first surgery is over.
• Well, let’s see. There’s the fact that I had a hard time letting go of something. It had me in tears nearly every day because I just couldn’t understand the reason why it happened. I am celebrating the fact that I am no longer in the grieving stage of this loss. I have moved on to the acceptance stage. Am I still sad, yes. But it no longer holds a grip on me.
• I am also celebrating that I stepped out of my comfort zone. I am horrible at confrontation. I avoid it at all cost. Well, work was costing me my health. I had to do something. So, I actually took it to my lead, and let him know how I felt in this new position and how the “team” was not a team. Now that I got it out in the open, I’ve been watching. And, honestly, I didn’t think anything would change. But I spoke my mind. It’s been a month now, and my next step is going to my manager. I have been documenting everything. I really hate doing this, but it’s affecting not just me, but the entire team, plus a one more team that we interact with very much.
• I’m celebrating my work from home week. A week I get to spend at home to help take care of TheBoy after his surgery, as well as work. Another reason my stress seems to have lessened.
• And, last but not least, I am celebrating that I have managed to lower my resting heartbeat from an average of 90 bpm to 69 bpm, just by lowering my stress levels.

What are you celebrating this week? 

Thank you to our lovely host, Lexa Cain for taking over and continuing the Celebrate the Small Things blog hop. I would also like to thank her co-hosts, L.G. Keltner @ Writing Off The Edge and Katie @ TheCyborgMom – without them, I’m sure this would be a daunting task!

To be part of this blog hop, all you have to do is put your name on the linky list on Lexa’s Blog, and then post every Friday about something you’re grateful  for that week.  It can be about writing or family or school or general life.  This is the funnest and easiest blog hop ever! (Originated by VikLit)

Related Articles you may like:

Sharing Memories – #CelebrateTheSmallThings – 19 June 2015
The Secret to Marriage
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No Longer Supporting the Bully Supporter

I wrote a guest post on one of the Support Group blogs that went live on July 22nd. I am now wishing that I never wrote it. Or at the very least, never agreed to having them post it, because really, that whole love and loyalty to my support group that I spoke about in it, the whole finding light in the darkness and a home, has been shattered beyond repair.

It all started coming to a head on July 26th when one of the moderators was let go from the parent company (PC), without warning, without any notice. PC turned our little group completely upside down. It was handled very badly in my opinion. A person who never participates in the group, is not part of our family, swoops in and basically says “trust us it’s for the best” but fails to give any explanation or even forewarning. Trust is not automatic. It’s earned. And for someone to come in and say that, how can you expect us to just say “ok” and go on with our lives? Really? In a caregiver support group, where change is really NOT ok. We have to plan. Our whole lives get upset when change, especially drastic change, upsets the balance we so carefully curate.

We, the group members, spent the remainder of the day and night trying to process it all and get PC to understand that how they handled this situation was incredibly bad. While our words to them seemed to have fallen on deaf ears, and probably nothing will be done to get our mod back, SHE KNOWS we love her and fought for her. SHE KNOWS the truth of it all and SHE KNOWS that we can see through the tip-toeing around, the changing stories, and the excuses.

That incident tore my loyalty in two. While I loved my support group family and those who started it, how can I remain loyal to the parent company who disrupted our family and refuses to speak the truth or acknowledge the fact that they handled the situation very, very wrong?

There have been other incidents prior to this that the majority overlooked. A particular individual would be nice one minute and rage and lash out at someone the next. I have been on the receiving end of that rage several times. While I do my best to remain calm and nice in my replies, the line was crossed several times. I eventually stopped responding. But sometimes the moderator had to step in because I am trying to change my self-image. I am trying to stand up for myself and not let people walk all over me. I am trying to face my fear of confrontation. I do remember one time, though, she crossed the line so far that I ended up stooping to her level and I regret that. After that incident, I blocked her for a while. It was nice and peaceful. But being the type of person I am, who thrives on helping other people, I unblocked her and just watched. I watched her go from nice to snapping people’s heads off in a matter of seconds and nothing ever got done about it.

We were a support group to help others deal with caring for their veterans. When this individual first started her seemingly random attacks at people in our group, I asked the moderator if anything could be done. They said they handled it behind the scenes. But she was allowed to remain. Her attacks still came. One day, one moment, she would be nice and sweet and generally want the help or give help. The next day or moment she’d flip. I get that she may have her own issues. I get that the loudest, most cruel person, could very possibly need the most help. But to attack the people who are trying to support you is NOT the way to go about it.

The moderators always asked for tolerance and acceptance. Well, Tolerance and acceptance works both ways. But apparently not many people see it that way. We ALL have done our best. All of the people who I have spoken with about this individual. We have all TRIED to be nice, accept her, offer a shoulder but what do we get in return? Snapped at, bullied, and abused. And from our perspective, the moderators continually took her side. In essence, they spit in the rest of the group’s face.

I stood up for myself and others in the group. I spoke what everyone else was thinking. I gave my honest opinion. MY PERSPECTIVE. And what do I get in return? For voicing my opinion on a subject, for voicing my perspective where the moderator asked and stated that there will be no judgement, no criticism, I felt both of those. I will not back down on my stance, nor will I give in. I will not stop fighting for MY FAMILY. To allow this toxicity to continue in the group, has made it unsafe for me, for anyone. I will no longer support the support group or the PC. I cannot tolerate bullies, in any form.

I was told that “Perspective isn’t truth.” I don’t see it that way. Perspective is truth to the one who perceives it. Truth is always relative. You have to be willing to see things from multiple angles. And I believe that this is what is wrong with today’s society. No one is willing to budge in their views on anything. Because I voiced my perspective, and it didn’t mesh with hers, then I was belittled, judged, and criticized. There was no compromise.

I WILL NOT BACK DOWN! That woman’s anger, her rage, and her cruelty poisoned our community, our family. And they allowed it to happen. Over. And. Over. And. Over. Again. We tolerated enough. I was not going to allow it any more. I wanted to save our community. To save our family and make it safe again. How can it be safe when someone bullies you in the group? When someone verbally abuses someone else in the group. I can’t stand by and watch that happen anymore. The group is no longer SAFE.

All I know is that I’m done. I’ve said everything I can say and they will not budge. They’ve hurt me to my core. My heart breaks because I really loved this group. Before I found this support group, I was utterly alone in the world. I did not think anyone would understand me and I went to a very dark place. When I found this group, I found Beth, I started understanding and things were getting better. I started helping people understand that what they were going through, living, and feeling, that they weren’t alone. No one should ever feel like I felt before this group.

I haven’t felt this hurt since right after my son was born and Iost yet another friend to some random reason. And I haven’t had a friend since. When I open my heart up again, this is what happens. Always. It has hurt my soul and trusting anyone new is going to be so hard again. I know I will come back to it. I always do. But right now I am grieving.

I am honest. I am true. I am loyal. And my greatest weakness is that I believe every one should be, too. I am thankful for the support group and the PC, to allow me to meet new people and connect, with people who truly understood me. I am thankful for that. But it has changed. for me at least. And I have to stand up for myself and not get walked all over any more.

I need a new home. If you can recommend one, please let me know. I cannot go this caregiver path alone again.

Related Articles you may like:

You Are Not Alone!

Pain – #CelebrateTheSmallThings – 31 July 2015

 

Pain.

It affects everyone differently.

For me, it always wears me down, makes me just want to curl up in my bed under the covers, cuddle with my pillows and kitties, and sleep until I don’t hurt anymore. I’ve only had a few bouts of pain that would wake me up in the middle of the night or keep me from sleeping altogether. I guess I’m one of the lucky ones.

Add to the normal stress of being a woman, working full-time, being a Mom and wife, being a caregiver has its own issues. One of my fellow veteran caregivers called it caregiver-itis. That’s when all the stress of doing everything manifests into physical symptoms. I’ve got it. Sure enough. But my doctor has labeled it – Fibromyalgia. And it is rearing its ugly head right about now. Every part of my being is hypersensitive at the moment. I’ve got stress and tension headaches and my neck is killing me. And I’m struggling to even have the energy to type all this. But that’s only the major things. There’s too many other things I could list.

Right now, I believe it has everything to do with my new position at work. I have a deep seeded fear of failing. But with therapy and learning more about myself, I’ve learned how to (hopefully) cope with this. I’ve been working this new position now for a week. I’ve actually started feeling a bit more comfortable in my new position and understanding what it is I am supposed to be doing, that isn’t getting done, and getting people to accept me and the process (which is like trying to get out of quicksand while you’re running) but it will get there. It IS getting there. It’s the first time I’ve felt good about a new job, where I am NOT afraid of failing (as much as I used to anyway). I did have a small slip back into my old ways on Monday, but I’m better now. Much better because I feel like I really am understanding. But because of all the stress, it’s caused all the pain to flare up and I am struggling to even have energy to type all this. I’ve handled this a whole lot better than I ever have. Even WITH the fibro flaring up, it’s something to celebrate.

As for TheHubs, though, he suffers insomnia on top of the pain. I’m sure not sleeping exacerbates the pain. It sure doesn’t help his depression and PTSD. Dealing with all this has left him in a rut. His insomnia has full on raged and I miss my husband. For the last two months he’s been unable to sleep, and when he does it’s more like he passes out from sheer exhaustion.

Most couples don’t think twice about sharing a bed. Heck, they probably take it for granted and maybe even complain about who hogs the covers. In our life, sharing a bed at the same time is something to be treasured. It always goes in cycles and we never know how long it’s going to last. There’s never any way to fix it, either. We just have to ride it out. But, oh, how I miss him.

This round, I think it’s been a couple of months already. He started out with the pain again. And then he had surgery on his nose. He’s a stomach sleeper so staying in the recliner would prevent him from hurting his nose. It’s been about 3 weeks since his surgery and now he’s back to the chronic pain and migraines, again. But last night, when he started falling asleep in his recliner, I got him upstairs and in the bed with me. I love it. When he’s not cycling insomnia, we cuddle for a bit and then roll over to go to sleep. I’m always too hot anymore to snuggle for long. When he is cycling the insomnia, though, he’s asleep in a matter of seconds. But before he takes that plunge, his feet touch mine in our own special snuggling way.

Even if he only slept for 4 hours, he still shared the bed with me. And that’s something to celebrate.

What are you celebrating this week? 

Thank you to our lovely host, Lexa Cain for taking over and continuing the Celebrate the Small Things blog hop. I would also like to thank her co-hosts, L.G. Keltner @ Writing Off The Edge and Katie @ TheCyborgMom – without them, I’m sure this would be a daunting task!

To be part of this blog hop, all you have to do is put your name on the linky list on Lexa’s Blog, and then post every Friday about something you’re grateful  for that week.  It can be about writing or family or school or general life.  This is the funnest and easiest blog hop ever! (Originated by VikLit)

Related Articles you may like:

Sharing Memories – #CelebrateTheSmallThings – 19 June 2015
The Secret to Marriage
You Are Not Alone!