Tag Archives: PTSD

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

LadyJai

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

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)

LadyJai

Related Articles you may like:

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

Financials & A New Car – #CelebrateTheSmallThings – 10 July 2015

I don’t know if you are familiar with my Many Hats Series of posts. There is one in particular that I would like to reference, today, because it is the back story of what I am celebrating. If you have the opportunity, please read the Accountant story, so you can get a better understanding of just how elated I am today. How proud I am of both TheHubs and I. Especially TheHubs.

We spent a good 5 years paying down our debt. When we bought our house 4 years ago, our credit score was horrendous. Not sure how we managed a 5% interest rate, but I was thankful for it. Two years ago, we bought a brand new car and our credit score had increased dramatically. Our credit card debt was nearly paid off by then. Of course I was proud of everything we’ve accomplished, the fact that I was able to say no to my husband when it was an absolute must, the fact he didn’t buy stuff anyway. There have been a few slips along the way, but we managed and I made sure I reiterate every time it happens. Sometimes I still have to put it all down on paper to show him exactly how much he’s spent because of his memory issues. But he has made the most progress over these last 5 years and I am so very proud of him. I make sure I tell him.

We’ve been considering getting a new car for a while now. TheHubs didn’t get everything he wanted in the car we got, plus there have been some pretty major issues already with the 2013 model. When we took our car in to the dealer to get some warranty work done two days ago, we wanted to see what was available to us and see how much of a difference it would be to upgrade. When they ran our credit and came back with the report, my knees literally buckled and I had to sit down. I never thought I’d see those numbers associated with our names. Beyond ecstatic. That’s all I could come up with what I was feeling.

The salesman ran the finance numbers and payment options and we decided. Four hours after we dropped off our car at the service department we had a new 2016 model. Near identical to our existing car.

Say goodbye to Double-Oh TARDIS (right) and say hello to Double-Oh TARDIS 2.0 (left)!!!!

Double-Oh TARDIS

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:
Accountant — The Many Hats Series
Sharing Memories – #CelebrateTheSmallThings – 12 June 2015
The Secret to Marriage

VA Appeal Update #5

I’ve been trying, for two months now, to find the contact information for Secretary Bob McDonald. I’ve had one person offer help with our claim because she had his “cell phone number” and would “gladly help so no one had to go through what they had to deal with.” Yeah, after 3 attempts to contact her different ways with no response, I’ve given up on her.

I sent the second letter to Rep. Ted Yoho on 6 February 2015 and haven’t heard anything back.

On 3/4/2015 I tried sending a letter to the House Committee on Veterans’ Affairs and when I hit the submit button it returns a 404 PAGE NOT FOUND error. I also sent that same letter to the Senate Committee on Veterans’ Affairs and when I hit the submit button on their contact form, I receive “Access Denied.”

Yeah, I’m beginning to think there’s a conspiracy to cover up anything dealing with the VA. So much for their “TRANSPARENCY.” UGH.

Sent them both a tweet about it. No response.

Went to the Senate’s Facebook page but the option to post on their page has been disabled.

Went to the House’s Facebook page and asked about the 404 error there, and tagged the Senate’s account. Now we wait to see if they respond.

Yes, I’m getting very, VERY frustrated.

I went home that night and posted this in my caregiver support forum:

Today was a complete waste of time and effort. So many things I WANT to do but I spent most of it lost in google and government red tape. Someone in another offered to help with our claim issues and never followed through. I also haven’t heard back from my Representative I wrote to a month ago. So I decided to see if I could look up Secretary McDonald’s contact info. No luck there either. Then, I went to the House AND Senate Veterans’ Committees and their contact us form. One gave me a 404 Not Found error. The other, Access Denied. I thought maybe it was just the browser, so I tried another. Nope. Me thinks there is a conspiracy! I tweeted both of them. No response yet. I went to their Facebook pages. The Senate Committee page doesn’t allow posts from followers. But the House one does. I commented about their web page issue and tagged the Senate in that same post. No response yet. So frustrated. I guess we are supposed to be patient and wait, even though we’ve been doing that since 2003. I guess we aren’t meant to be lucky like everyone else. I guess pain and suffering in more ways than just what he’s going through is our lot in life. I should accept this. But I’m not going to stop. I will continue to try to get my heart hurt because that’s what I have to do. If I don’t do it. He will give up. It just reminds me of the story of Job in the bible. There’s always hope. Right?

I received an offer to help from one of the admins who was “connected.” Four emails later, and started feeling a bit better.

But that didn’t last.

I’ve sent the letters to Senator Ted Yoho, the House & Senate Committee several more times since February. I have heard nothing. What else can I do to get this going? I know I’m supposed to “Hurry Up And Wait.” That’s been the military motto my father drilled into my head since I was a baby. You’d think I would understand this by now. Logically knowing this is so very different from actually practicing this.

A few days ago, we did receive a letter from our Regional Office stating:

We have certified your appeal to the Board of Veterans’ Appeals and are transferring your VA records to the Board in Washington, D.C. The Board will notify you when it has received your records.

More Hurry Up And Wait. Let’s see, here’s a brief rundown of our latest claim with the VA:

  • 7/22/2009 – Claim Received
  • 7/29/2010 – Claim Considered
  • 8/2/2010 – Notice of Decision
  • 7/14/2011 – Notice of Disagreement
  • 10/2/2012 – Personal Hearing at the VA Regional Office
  • 1/29/2014 – VA C&P Exam
  • 7/14/2014 – De Novo Review election Received from Appellant
  • 6/22/2015 – Certified the appeal and sending records to the Board of Appeals in DC.

You can see how frustrating waiting can be!

In the mean time, I continue to advocate for him, anyway I can. But I’m running out. If anyone has any more ideas I can try, I am open and willing to listen. Please send them my way. I have finally found Secretary Bob McDonald’s phone number, which I will leave here for anyone else; but I think I might be too chicken to call him. I wouldn’t even know what to say. I write better than I speak.

http://static.c-span.org/assets/swf/CSPANPlayer.1434395986.swf?clipid=4507948

LadyJai

 

 

Related Articles you may like:

Our Story
VA Appeal Update
VA Appeal Update #2
VA Appeal Update #3
VA Appeal Update #4

AC, Working From Home & NO GLASSES! – #CelebrateTheSmallThings – 19 June 2015

 

This week, I am celebrating the fact that we have half-Internet at work. One network is up and operational. However, I have nothing to do, job-wise, on that network. The other network, the one I can actually do work on while I wait for work on the other, well, we’ve been having random outages for about a month or so. We switched ISPs for that network and they have been quibbling over the payment to the new place. My take on this is that our payment went to the old place. Another local site had this happen, too, and it took 6 weeks to get situated. All week, we’ve had no Internet. So all week, I’ve been working from home. A sort of working vacation. LOL

I’m thankful for AC and not having to go out in this all week:

Oh and I’m also thankful my LASIK is still strong! Fifteen years post-LASIK and I am *just* now to the point I *may* need glasses. Fifteen years ago, I bought the minimum prescription lenses I could buy so I can drive at night and reduce the halo/starlight effect and also stop the contrast issue I have post-LASIK. I am happy to report that I can *still* uses these glasses. Until my prescription changes enough to warrant a change in lenses, that’s when I will get re-LASIKed. However, I *should* be wearing reading glasses…but that’s expected when you get older. 😛

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:
The End and The Beginning
Health & Happiness

Family Time Outside

Sharing Memories – #CelebrateTheSmallThings – 12 June 2015

I’m sorry I was not around for the last couple of week. I’ve had a friend from out-of-town in and we were celebrating! First, she’s someone I met through my Veterans Caregiver Support Group and we’ve been talking daily for a year and a half. She drove half way across the US to come visit me. ME! She came to visit me! How amazing is that?

I’m linking my Facebook Album so you all can enjoy all the stuff we did while she was here, despite all of us getting the stomach bug for a few days!

It really was a blessing to have a real life friend, someone who completely understands and doesn’t take offence if we have to leave for medication or he falls asleep. Something we haven’t had since we left the service in 2002. Probably longer, really.  ❤ you Beth to the moon and back!

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

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Advocating For My Wounded Warrior (Part 1)

So, yesterday was a day of HOPE. Today, not so much. But I’m still advocating!

I’ve been following a the use of magnetic stimulation for migraines since 2008. eNeura, Inc. has the first FDA approved personal magnetic device for use with migraine patients. In 2013, the FDA approved its marketing. I attempted to contact the company then to see about getting my husband into a study or find out any more information. However, no one ever returned my email. Their site was basic and they only had a contact for press relations. I tried anyway.

We know from first hand experience that magnetism WORKS to relieve his migraines. When he was still in the Army, and the migraines weren’t as often, nor as bad, he would keep a neodymium magnet inside his cap and it would help. When they went to the berets, though, there was no place to keep it secured and hidden. So he went without. Every time he’s ever had an MRI he’s had a very bad migraine. This is not unusual, even, since he gets them at least 4 times a week. Every time he’s gone into the MRI machine, he falls asleep almost instantly, and then wakes up with NO MIGRAINE. So we know magnetic therapy works. But there’s no way we could get our own personal MRI machine. Plus, it would be incredibly expensive to run the thing. *shudders*

Yesterday, I went looking at it once again. This time, there was more information about the device and more contacts I could pose more questions to. I again sent a letter explaining my husband’s 15 year migraine history and asking about the device, how much it costs, and how we could get it.  This time, they responded quickly, but with rather disappointing words.

Dear Jamie –
Thank you for your inquiry regarding eNeura’s SpringTMS migraine treatment device. We are pleased to announce ours is the first clinically proven, non-invasive device cleared by the US Food and Drug Administration to relieve pain caused by migraine headaches that are preceded by an aura. The company has also received European CE mark for its SpringTMS device for the treatment of acute migraine and is currently marketing the device in the United Kingdom.
The initial U.S. availability of SpringTMS will be through a post market open-label study with leading headache specialists at a number of headache centers around the U.S. The headache centers participating in the post market open-label study are located in Arizona, California, New York, Ohio and Pennsylvania.
Please email Customer Care to request contact information for the site nearest you, or click on this link for a complete list of the sites currently recruiting for the study: https://clinicaltrials.gov/ct2/show/NCT02357381 . This link will also provide you with the list of inclusion and exclusion criteria for the study. If you husband does not meet the criteria, please still contact the study site nearest you. Some of the sites are also prescribing the device to private-pay patients who do not meet the study criteria but may benefit from sTMS (Cleveland Clinic, Mayo Clinic and Jefferson Headache Center).
The SpringTMS is rented for $750 for a three-month prescription, and we do not have a discount program in place at this time. If your husband is prescribed the device, the prescribing clinician will provide a treatment plan that is appropriate for him.
Best regards,
eNeura Inc.
Sr. Director of Customer Care

Seven hundred fifty dollars EVERY. THREE. MONTHS! Oh man oh man oh man. And this isn’t even something that insurance will probably pay for right away, I’m sure! Let alone the VA.

Speaking of the VA.

This got me thinking and doing a little more research. I found out that the VA has a research and development team within their organization. So I thought I’d contact them. With the eNeura device still in studies, I thought maybe the VA would consider this. I know there are more veterans out their who suffer migraines than just my husband. And I wonder how many of them are in the same situation where nothing has worked for them to relieve the pain and severity and the number of them. TheHubs has exhausted the VA Pain Center’s capability to help him. Last year was his last appointment with them and they pretty much told him that they can no longer help him.

I am hoping beyond hope they will consider getting into the study and offer it up to my husband. But this is the VA we are talking about. I don’t know what else to do, where else to go for help. Their “Contact Us” form is generic and done by a 3rd party (UGH) rather than contacting R&D directly. And now I wait.

Please pray.

LadyJai

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