Tag Archives: not alone

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!

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LadyJai

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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Building A Support System

I’ve come to realize, these last few years, that it is very important for caregivers to have a support system in place. Without it, we would go insane. I spent nearly 13 years thinking I was alone in my struggles, that no one could ever understand my home environment, my husband’s issues, and the daily struggles we go through. Now, after being introduced to the military caregiver community, I know that despite the different situations that got us all on this path, we all share the same struggles. Maybe not at the same time, but we have or we will. We are all on the same road, just at different points. We can offer up advice to those just starting, or gain knowledge and wisdom from those further along the road. I was blessed with this realization and with the group I formed a bond with, and the one person I spoke to daily. I actually had my first friend in 10 years.

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And then the S*%t hit the fan.

Even though we were all experiencing similar issues and in a group to SUPPORT one another, drama still unfolded. I don’t do drama well. And when I start seeing favoritism and rule breaking, especially when it harms the entire group, I had to say something. And when I spoke up, I was the one ostracized and then the bullying redirected my way. I couldn’t stay quiet. I stood my ground and lost everything because of it.

It’s been 8 months since that happened. I was devastated. I lost my support group. I lost my friend. I lost my lifeline. I started slipping back into the darkness and began listening to my demons again.

This time, though, I knew I could get out of that funk. I knew there were others out there that were living similar issues. I knew I just had to find them. It was a struggle for sure. I went through several new online support groups. None of them really clicked. Some even dissolved as soon as I joined due to previous drama of their own. Others I am in are not very active at all.

One group formed out of the dissolution of another and I was invited into it. Since then, it has grown and I have been pretty active in there. It’s not as quaint as the previous one and the growing numbers make it a tad hard to connect with any one individual. But another good thing came out of this group. Since we’ve grown so large, and the caregiver community is so spread out, we have branched off into state groups as well. This may be a bit more manageable, as well as closer both physically and emotionally since we are all in the same state and in smaller numbers.

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I feel like I’m back on the track with an online support system. I have forgiven those from the previous group who left me broken. I have an online support where I can go and ask a question and offer assistance and prayers when needed. Now, though, I have to find people I can go to locally that I can ask if something were to go catastrophically wrong.

There have been times I had to take TheHubs to the ER where we had to wait and wait and wait. We usually waited so long that we had no food and no one to come bring us food, especially for a growing boy. This is when I realized I needed a local support system as well.

Unfortunately, I’ve always been one to never ask for help. I will gladly give of myself to others in their time of need. But when it comes to me, it’s like I just don’t want to burden anyone with my issues. Why do I do this? I am human. I have problems. Everyone has problems. And I don’t think it is a burden when someone comes to me with a problem. But my problems I view as burdens. Why? I have yet to figure this out. And I have to consciously acknowledge this and accept that I am human and my problems are not a burden to others who want to help and have offered. This is sooooo hard. Even though I have my parents close by, they are still a 45 minute to an hour drive from us. And it’s still hard for me to tell them all that we struggle with. Plus, they have their own lives. Even though they are retired, they still are always on the go, so when appointments come up for us that do not mesh well with school or work or other activities, I have to rearrange schedules or take time off work. That aspect is getting a bit easier as TheBoy ages though. But still, I worry about what would happen if…

Does anyone have any suggestions on how to accomplish a local support system? How to allow myself to let go and ask for help when I need it? Anyone?

Maybe I just need lessons on how to be a good friend because it’s a two-way street. 😛

LadyJai

Related Articles you may like:
My Personal Anti-Bully Campaign
Anxiety, Depression, And Secondary PTSD
You Are Not Alone
My poem about depression and hope, entitled Pieces

Positives For Last Week – #CelebrateTheSmallThings – 5 February 2016

I’m a bit late posting my Celebrate the Small Things. But the positive is, I’m posting now! 🙂

Obligatory VA selfie!

Obligatory VA selfie!

POSITIVES FOR THIS WEEK:
1) My Hope Bucket for “something to work” for TheHubs has been refilled. I have to remember it’s the VA we are talking about so that Hope Bucket needs to have a filter on it so I don’t let it run away on me.
2) After dealing with the many ID-10-Ts on the road on Friday, we saw a RANDOM ACT OF COMMON SENSE while pulling into Taco Bell so we bought the guys lunch.
3) Took Ms. Rose (the older lady I helped after an accident back in December) to the store and bank since she hasn’t gotten a new car yet. I feel bad for her. She’s always telling me she wishes I were her daughter. She buys me things when I tell her not to. I feel awkward with her, but it’s a good thing to help her out. But I’m still always awkward.

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)

LadyJai

Related Articles you may like:
Goals for 2016
Been A While – Celebrate the Small Things
Pain – Celebrate the Small Things

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!

flatfoot_optionBasically, 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

MBAsurg5 podchildren

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)

LadyJai

Related Articles you may like:

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

Advocating For My Wounded Warrior (Part 2)

We recently completed our annual eye exam. (You can read more about that here.)

We had to spend about $600 on TheHub’s glasses. His eyesight is increasingly bad. Every year he needs a new prescription. And glasses aren’t cheap. And since he’s become photosensitive, we decided to get him a pair of prescription sunglasses. So that tacked on to the price tag. Luckily, we used his old frames for that. I was hoping that would help him get out of the house more. But they aren’t as dark as we were hoping, nor are they as strong as he needs.

So, I’ve been trying to think of something he can do so he’s not stuck in the house all the time, something he can be passionate about again. And I posted the dilemma I have to one of my caregiver groups I’m in. I was blessed to have found it because the lady who runs it, her husband also suffers from migraines. She pointed me to the VA for their VIST program (Visual Impairment Support Team. Her husband goes through them and they have given him two pair of special glasses, one for inside and one for out.

During my research on this, I found that in our location it is called the VICTORS (Visual Impairment Center to Optimize Remaining Sight). I called them yesterday morning and they said they don’t normally see migraine patients, but they put in a referral for TheHubs to be evaluated by this program.

He now has an appointment for the end of September. I do hope this works for him, better than what we can get on the civilian market with our limited pocket-money. And allows him to get out of the house better, and more often.

Wish us luck.

LadyJai

Related Articles you may like:
VA Appeal Update #5
VA Appeal Update #4
VA Appeal Update #3
Our Story

 

No Longer Supporting the Bully Supporter

NEVER BE BULLIED

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.I'm enoughLadyJai

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You Are Not Alone!