Time Hop

Social media is loving the new craze called "Time Hop" A great app that takes you back in time, several years just to even last year at that same time. It brings back every picture, every status that you have ever shared. I looked back through my blog today and realized a week from tomorrow my Time Hop will be filled with a tone I don't usually fill my FB page with. It was a scary lonely time but at the same time it was very Deja Vu for me. Its a week away and I am ok . It was a different type of learning experience, one that has changed my mind set on a lot of things.
A year ago next week is when our lives started to notice the change. We walked on eggshells and hardly spoke at all and when we did it was never very pleasant. Wednesday I had gotten so upset I began to search for a family lawyer. I was ready to file for divorce. I had, had enough of being the emotional punching bag and him refusing to seek any sort of help or treatment for his anger. It was always our fault and that he is who he was and I just needed to either learn to deal with it or leave.  I had been in contact with lawyer and we were to meet on Monday via the phone during my lunch break. I had no real plans but just that I needed to know my options and to go from there. I felt horrible for wanting to turn my back but at the time I was left with no options.
A year ago I watched my man slowly dwindle down to something he had never thought he would become. It might be 365 days later but I can still see that morning roll through my head as if it has just happened days, moments earlier. I was left with two options and I was praying option 1 one would work because I was scared to death to have to call law enforcement on my husband.  Option 1 was a go. Seth stopped what he was doing and in the crappy pending winter weather came to my, well our aid.
I think back and that whole time frame he was gone and wonder what it would have been like had I not had Option 1. If we didn't have Seth in our lives. If we didn't have the support of someone who wasn't family that was nearby. He has his own health issues, his family to raise as a single dad and he dropped his life for over 6 months to help us through that. We had a lot of friends help us during that time, some who are still very much a part of our lives and we are thankful for and some who drifted away whom we no longer are in touch with. Option 1 saved our family. Seth, saved Chris which in turned saved us.
I woke up this morning with my Time Hop alert. I held my breath as I opened the app and the first thing I saw was H the day before his life changed too, that he was on the floor working on a puzzle sent home from school. Blissfully unaware that 12 hours from that moment he would face such havoc on his life and it being turned upside down. A year ago today I started this blog. I wasn't sure if I would keep it up or what I would post but its been the closest thing to therapy I can get. I have at least 5 posts not yet posted and I don't believe I ever will mainly for the fact they are half start posts that I couldn't justify finishing now because its not longer in that moment.
This time next year my Time Hop will be filled with news of making changes, helping others and knowing that having a loved one with PTSD is not a life sentence to hell. Its a life change but there is so much more that can be done now. Its time to lift the nasty stigma that is attached to this and make those around us more aware that these people aren't crazy, they endured such horrific life altering events that it has forever changed the person they were. Most of those with PTSD suffered so greatly so that we can sit here and enjoy these things we have right now. It is time to stop looking down on them and casting them aside and take them in, help them, talk to them, support them. Show them they are not damaged or worthless but that they are wanted and appreciated and admired.

New Joy

Its been a few weeks since our unfortunate incident. While I had typed a letter to the West TExas VA Health Care System in hopes the patient advocate or someone could lend us some help in our plea to find a new doctor for Chris and hopefully a better treatment option. Chris made copies of my letter I wrote and dispersed them to a few folks he knew hoping someone or something could help. We got our help but never in a way I had ever imagined.
Tonight at the local VFW there was a VA town hall meeting. Just as I advocate for H I need to help advocate for Chris. I know he is a big boy with his own words but sometimes he struggles to find them, or use them the right way. However tonight he stood up and spoke. He had his head held up looked the board straight in the eyes and spoke of his issues. I was proud. While yes I now tactics are in place by docs to ensure forthcoming and honesty and responsibility, there also comes a fine line of what is just needed and what is to much. That Friday was just too much. Enough was enough from the doctor who could never remember him, would eat his lunch while telemeeting with him, belittle him and not hold much faith in him.  The whole staff agreed it was too much also.
We spoke with a patient advocate who wants to read my letter, she wants to ensure that all of Chris's doctor visits will be handled face to face with reimbursement for travel since telemed is not a suitable treatment option, she wants to help fix the transcript that was filled with more opinion than fact from that day and we will be filling out a request to get that done. Just an hour meeting another hour of talking to two different people and big changes were happening. On a normal day that just doesn't happen. Not with the VA at least.
I met a woman, and through a strange story that goes with it, that lost her husband just a few months ago to PTSD. She stood tonight and delivered the most memorable story that no one in that room will soon forget. She baited those bigwigs, she had them all ready to jump through hoops to help and of course when the director offered to help her she dropped the ball in the calmest most composed manner of anyone I had ever met.... She said well he killed him self back in September. Jaws from those bigwigs hit the floor! That along with everyone sitting. Even the cameraman in the back just sort of look dumbfounded. However the presentation really made it VERY clear we have some big issues that need to be addressed. I really think they took that one to heart.
At the end we were asked to speak with the patient advocate and the director. We spent about half an hour with the patient advocate. We told her that this was our formal complaint on his telemed doctor. We were then informed no more telemed face to face only and travel pay would be reimbursed she would just have to talk to a few folks to get that hopefully in place, she gave us info to have his files fixed from the over stated opinions VS facts that were placed in his file from that day. Once meeting with the director I knew that he was really wanting to help. I come off strong but not too strong but I wanted him to know that this system is seriously flawed. He said in rural areas its hard to get the best care we are level III Dallas however is level I. He basically laid it out that he would help us get the best of the best out here but that Dallas is where its at. Ok great you say more trips to Dallas. No here is the screwed up part his care would have to come from New Mexico. Yep see screwed up. Dallas is its own sort of region and West Texas area has 33 counties covered and for most treatment folks are sent to Albuquerque. What disabled vet wants to spend 10 hours in a car to be reimbursed AFTER their trip?! Ya no one! However..... if Chris showed up in Dallas for care they can't turn him away. However it was hinted at it might be better suited if we aimed to go to Dallas at some point.
Throughout the conversation the director took genuine concern over both Chris and I. He said him and his medical team would sit down and find the best treatment plan for Chris and that if he was wanting to do inpatient they would help find a source for him. He then stated all appointments from here on out would be face to face and that telemed was never an option. He also stated he would be paid for those trips to Big Springs. He threw something into the conversation that just about made me cry. Respite. He is going to look into respite care. Between H and Chris there are no breaks, not with work, the kids and everything else. He wants to ensure we get some respite! He also said that the caregiver program would be something he would look into but not as familiar with yet since he is still new but he would get us answers.
He wanted Chris to embrace his new normal. We know all about new normal with our diagnosis of Autism with H. However this new normal means letting go of some stuff for Chris. The director asked him what brings him joy. Chris responses of shooting guns made his eyes go wide. He told him that might not need to be his joy especially with the issues lately. We mentioned airsoft and he sort of turned his nose up to it but I think in the end he will change his mind. He really wants Chris to let go of the past and take on what is now. Chris mentioned getting help before January when he leaves for school to train dogs. Again the response from the director was that this isn't an overnight change it will take time. I want to support Chris so I told him that maybe in April or next Aug would be better suited because of all of this. His care needs to come before his wants. I think he is seeing that.
This system, these people put in place to help our wounded our brave men and women who fought so hard with all their courage are now being silenced. Made to feel shame and worthless for the wounds they bare especially those no one can see. I know that the VA has been in some very poor light and that they feed us BS and lies. Tonight though maybe its the naive me, but maybe its not, I saw a man with real concern in his eyes reaching out to us and wanting to help my husband before he became another statistic. Another one of those 22 a day that end their life because of PTSD. So I have put my faith and trust in this man in hopes that in the next week or so we have some real answers and some real positive changes. I don't put all my eggs in one basket but tonight given the circumstances and how I was feeling I did.
I want Chris to find his new joy. I want him to know how good things can be. I eventually want to help others around me find their new joy. PTSD doesn't just change the patient it changes their family. It changes their joy. I want to find our new joy so that soon I can show others that it can be done.

Toxic……..Waste…..

No I am not talking about the city dump or even my teenager’s bedroom. Those words were spoken to my husband Friday at his VA Telemed appointment. A medical professional had the audacity to sit in front of his computer, two hours away on a fancy version of Skype, and had the nerve to say that Chris was toxic, our marriage was a waste and that it would be best if I took the kids and just left him.

I had gone to this appointment with Chris in hopes to help him get the help he needed but instead got just the opposite.  The last few weeks had been extremely trying for Chris, and I like any good spouse in this situation would, was trying my damndest to him the help he needed.  I was already anxious over this appointment. I spent the 15 minute car ride to the VA writing out topics to be addressed. The 10 minutes in the waiting room seemed like eternity to me; however the couple behind me had been waiting far longer from what I could gage listening to their conversation. Finally we were called back and I began to relax some knowing that I was going to be able to express the concerns.  Chris’ vitals were taken, questions asked that were based on his PTSD diagnosis and then it was a small wait to be escorted to the room where we would be speaking to his doctor.

Once settled I realized to this doctor we were just a number to him. I had been to a previous appointment a few months back, but the doctor had no recollection of me and asked if I was his spouse.  I sat quietly as the routine mundane questions were asked to Chris. A few things started to rub me the wrong way but I sat patiently waiting my turn to speak. I mean I assumed since I was with my husband he would realize I would want to speak up. However Chris was unsure of an answer to a question, what his BP was 20 minutes prior to this conversation, and I knew it and answered.  I was told that Chris needed to answer it. Seriously! He was unable to recall the numbers and I knew them I see no big deal but then again I was not meshing well with this doctors lack of logic. He moved on to lecture Chris about meds he should have been taking but that he requested be on hold because he either A) wasn’t using them or B) just felt the need not to take them. Chris has been asking for a while now but was told by another doctor that his BP was to low and couldn't take them. Basically he made Chris feel like a liar and that he would fix it and he better take it.

We moved on to questions about home life. Finally a situation I was more able to speak on, or so I thought. He asked a few questions. I had started to tune out a bit as I was mentally preparing myself to interject my thoughts and concerns. At this point I wasn't really caring if he wanted my thoughts or not but I figured I took this time off of work I will be saying what I need to say. He asked Chris how things were going at home. Chris gave an answer that was barely audible and the doctor looked over at me.  Finally my turn to speak, my turn to voice what was on my mind and say what needed to be said.  Or so I thought….

Once his eyes turned to me I decided to just put down the note pad and speak from the heart. I told him of the situation that happened ten days ago. Chris hadn't slept in four days, he had grown distant and agitated but I neglected to see this as a pending trigger for a big blow up. I had been on such a high of months of no issues that I forced myself not to see that there was trouble looming in the distance. I failed to see it and it ended up ending poorly. It was a rough few days of words barely spoken, sides of beds left empty to reside to couches, and schedules rearranged to help meet the needs of a stressed out family. I was letting all of this just pour out of my mouth only to be told that our living situation was toxic, my husband was toxic. Our marriage was a waste. There we no real options but that it would be best to get me and the children away from such a toxic environment. My jaw dropped. I was told that he had half a mind to get CPS involved because this sounded so horrible. I was also blamed. I am sorry, how is my not being able to attend every appointment and express my concerns when they should be expressed to a lady runs on appointments only my fault?! I work full time, my job puts food on the table, insurance for all the kids and Chris, it pays the bills. I am sorry that I can’t just take a day off at the drop of a hat to do things. Explaining I worked as a preschool teacher and that there is a big process to get time off didn't seem to matter. He was so hell bent on making Chris and I feel worthless he was going to keep going with it.

I explained it would probably be best for Chris to go back into a PTSD treatment facility. He had stated himself that he things it would be best. I also brought up the point that Chris had said his other doctor or maybe it was this doctor said that it might be best to start tapering off meds etc. I said if this was the case he would not be detoxing at the home. He would need to be in an environment that was trained to help with withdrawal and patients that were not able to take their meds. A wife and four children was not that environment. He asked if he should go back to Waco. I told the doctor sure but he would prefer to try out a program he had researched in Denver. That was another mistake. While he said it would be great and he would support it he wouldn’t do anything to help the matter. He even lied about his knowledge on it to humor Chris and I. That pissed us off even more. Who the heck does that?? I gave up. I knew I shouldn't have but I had retreated to the back of the chair, exhausted and exasperated with the treatment my husband was receiving. Here he is a Veteran who served our country for 14 years and put his life on the line and this is the treatment he gets?  And we wonder why those with PTSD often opt to take their own lives. Well if they encountered doctors like this what hope or help do they have? Even if they did have family to turn to, why would they when they are told they are horrible people who are not worthy of having a family.

Friday it became my mission to put a stop to this unfair, unjust treatment. No one, no patient of any disability, disorder or disease should ever encounter such horrific treatment. This must stop and it will stop now! I have written a letter and plan to address this with the patient advocacy, send it to our congressmen, and share it with whoever can help. We tend to have to be our spouse’s voices when they suffer from PTSD.  This is a very taboo disorder. There is so much stigmatism still attached to PTSD, there is so much society doesn’t know and only grasps from what they have been exposed to. When our spouses encounter such poor treatment and then are forced to go be mainstream with society its not wonder they struggle to blend in and mesh. Society sees them as a mental case that would lose their cool at the drop of the hat. That they are unable to function in today’s society because they are so caught up in living in their flashbacks and war stories. Doctors like this do not help debunk society’s already tainted thoughts.

Today was a turning point. Today instead of letting this just go and hoping things go better next time we decided to take action. Tomorrow morning we will begin the journey of fighting for better treatment, better options. We will stand up for what is right and what he deserves. No one at all deserves to be treated like they are toxic…….. or waste………