Tuesday, May 15, 2018
I went on the hunt for the best hair removing wax that the local drug store had to offer. After reading several different options, I had made a decision and I was well on my way to a smooth, hair-free bod. That's what I thought anyway. I was so excited to try this out when I got home, because the thought of not shaving every day was appealing. I read the directions more than once to make sure I knew what I was doing. I even did some online reading so I felt extra confident that I could rock this out. I'M A FREAKING BEAST. I'VE GOT THIS!
I didn't have this.
Here I am, locked away in our little half bathroom of our sad little rented townhouse (We're talking like 10 years and 3 kids ago), ready to roll. I begin to apply the wax and then attempt to use the strips to remove the hair. This was proving to be a lot harder than it initially sounded. I was struggling to get it to remove anything. In fact, the strips weren't even removing the wax really. I had even double checked the wax temp and all. I continued and became increasingly frustrated with this incredible hair removing failure. That's when everything went wrong. I lost my balance and in catching myself, managed to glue my inner thigh to my crotch with wax. And let me tell you, It was STUCK. So here I am alone in this tiny room, no bottoms on and now unable to even put my right leg on the floor because my thigh is glued to my crotch.
I began to have a mini panic attack because there was no way I was seeking help. My husband was gone (Yay, Navy), the babies were asleep and I was alone otherwise. I began to tug at the seemingly gorilla glue strength wax that had fixed my thigh to my crotch. My skin stretched more than I knew was humanly possible, but stayed firmly glued together. While struggling with this, I lost my balance and fell into the wall, still hobbling on one foot. With my face smashed into the wall, I just stood still for a moment in defeat. But then I came back into reality realizing that I can't just stay like that and I needed to fix this. Again, I started tugging my skin apart from the glue. Here I was thinking... I can't call 911... you don't call 911 for something like this. But what if I don't ever get unstuck and then I just die in here, mostly from embarrassment, or course. They are going to find my body like this and wonder what the hell kind of fetish business was going on.
I eventually unglued myself, but there I was left with dried, cold wax firmly suck to my skin. I spent the next couple of hours in a hot tub and using oil to pry/peel/scrape the wax off. I even resorted to using the razor to help get it off. I WAS FREE!!! FINALLY!
Guess what I've never done again? Flipping waxed myself. I don't even wax my brows! I use tweezers....
The moral of the story my friends? I don't even know.... I'm sure plenty of people can wax themselves like a pro. But I am not one of those people. And despite it being over a decade ago, I'm still too traumatized to try it again. So the razor company of my choice still gets a small fortune from me.
Friday, October 13, 2017
Here's a story for you. This week, while at the VA for a CT scan with contrast (for my husband's nasal cavity. It was ordered in JUNE... it's now October. That's a whole other issue) just as the CT was finished, Tony began to have a Generalized Seizure... Now, let me explain to you how I usually handle things when he is having any kind of test or procedure. I usually go back with him and warn the person performing the test or procedure that he has seizures frequently and to just be aware in case of the event that he has one, so that they aren't taken by surprise or people start to panic. Well this time the man who came to get Tony whisked him away, not allowing me to follow or speak to him and told me to wait in the waiting room. I did as I was told, against my better judgement. Tony has a brain injury and I'm his caregiver. There is a reason he needs a caregiver folks. He doesn't think to warn them of such things. Let's not forget though, this is the VA Hospital he gets all of his care at and his record is full of everything they need to know, including his frequent seizures. But, why would they look at that? Pfffft.
Anyway, back to the main story. Maybe 10 minutes after he had gone back for the CT, I heard noise that sounded like Tony often does when he is having a generalized seizure (a loud guttural sound when the air is being forced out of him with muscle contractions). I didn't want to run back there without being sure, so I hesitated. But as soon as I heard them call a code blue in CT over the speaker. I went straight back there. And let me tell you, it was chaos! Everyone is coming from all directions like a chickens with their heads cut off. People are yelling back and forth that he's having a seizure and trying to grab at him. They wouldn't allow me into the CT room to check him. And I kept trying to calmly explain that I'm his wife, his CAREGIVER and he has seizures frequently. I just wanted to look at him to determine if this flipping code blue and hysteria of the magnitude that it was, was necessary. They wouldn't let me near him of course. So I went to the VA Hospital ER where they quickly wheeled him off to and watched while they were all crowded around him administering medication, taking blood, taking vitals etc. I could see that he was beginning to have another seizure and warned them he was having another one. While having the seizure the ER dr is telling him "Tony, calm down. Relax" I was like, he doesn't know what you're saying.... he has no control over anything right now... but whatever dude. They administered 4mg of Ativan, which is the highest recommended dose for status epileptus, AKA enough Ativan to take down a baby elephant. That was just fine, playing it on the safe side because they weren't aware that 2 seizures back to back is also common for him.
The seizures were pretty intense, but nothing he hasn't had before. I deal with these exact seizures often. I explained all of this to the bazillion people asking me "Has he ever had a seizure before!?". I'm actually surprised by how nervous the staff got. Maybe I've just become THAT desensitized to his seizures because I deal with them so often? I do appreciate that they were ready for worst case scenerio, but had they listened to me or at least looked at his medical record, it wouldn't have been such a dramatic scene.
After he was stabilized, the ER dr told us that he wanted to admit him for a couple of days. I asked for what exactly, because this wasn't a new thing and they don't have a seizure monitoring unit. He said it was protocol, especially because he had 2 significant seizures back to back (which again, isn't new). We thought about it and due to the fact that he wouldn't have constant supervision when I had to leave the hospital to care for our children, we decided we would not allow them to admit him. He was safer with me in the event of a seizure, than he would be alone in a hospital room. Thankfully the ER dr was nice and Tony's case manager, who also happens to be a nurse, was in the ER when it all went down, so he kind of helped vouch for me and my ability to care for him as well.
Tony has had many seizures in public before, but not in this kind of situation. Plenty of excitement to last me a while was had that day!
Tuesday, September 5, 2017
Being a Caregiver means completely different things for different people. Every Caregiving roll is unique.
Here is what being a Caregiver is for me: As my husband's Caregiver I am his his full time supervision, personal aid, daily planner, chauffeur, personal assistant, chef, support.... it means long days, longer nights, worrying, making tough decisions, protecting him, handling seizures, handling meltdowns, handling anxiety attacks, handling mood swings, ADVOCATING, fighting for what he needs, working with drs, researching... on and on and on...
There are so many aspects of his medical issues that people don't see. There are so many things that are too uncomfortable to talk about. Even our closest friends haven't seen it all and don't know all of what goes on when they aren't around. This is the part that makes being a caregiver so lonely. The balance between garnering support, creating awareness and maintaining a degree of modesty, is delicate. Some nights, as a lay awake after a particularly rough day or a bad seizure or an awful meltdown, I want nothing more than to pour it all out on Facebook (or something like that), so I can just talk it out. But I know, some of it my husband would be mortified if I discussed it. Or at least uncomfortable and embarrassed.
I have many sleepless nights, either because I'm taking care of my husband, or because I'm worrying about money, or I'm worrying about my husband, or I'm researching things for his treatment.... I have many days where I am afraid this is the day he will be hospitalized for a breakdown, or this is the seizure he won't come out of. I am in a constant state of high alert. It isn't safe for him to be left alone and even taking a shower leaves me fearing he'll get hurt while I'm in there.
When I am sick, I'm still his full time caregiver. When I have a migraine, I'm still his full time caregiver. When I am tired, I'm still his full time caregiver. When it's my birthday, I'm still his full time caregiver. I am his full time caregiver, 24 hours a day, 7 days a week. The VA Caregiver Program doesn't think I am worth more than part time though, which is such a huge slap in the face. He has several seizures a week, that require me to take care of him fully, including physically moving him, cleaning him etc. His meltdowns and panic attacks require me to help him through them. I have to manage his medication. I have to make all of his appointments. I have to be with him at all of his appointments. I have to help him remember simple things. I have to help him with his CPAP and mask throughout the night. When his sleep disturbance keeps him awake, I must be awake. When he has hallucinations I have to keep him safe and manage him when he's inconsolable. I must deal with his mood swings and outbursts. And this is just some of it. He is my full time job. Without my care, he would either need a round the clock aid or to be in a facility. Both of which, would cost substantially more than what paying me as a tier 3 caregiver, would be.
But at the end of the day, he's my husband and I love him. I will keep fighting for him. I will keep advocating for him. And I will keep taking care of him.
I am a Caregiver.
Monday, May 8, 2017
The VA here has a PCT clinic, which is specifically for veterans with combat PTS. They don't have a regular PTSD program that covers non combat PTSD. They have no TBI clinic or program at all. They just address combat TBI in the PCT clinic. So here, there is virtually no program for my husband's situation. What he really needs is a poly-trauma program like they had in CT, while he was still active duty. But that isn't available. The combat veterans absolutely need the programs they have for them, but how about the other veterans suffering from the same conditions that just aren't specifically caused by combat? Why are they forgotten about and thrown to the side? His 18 years in the Navy resulted in him medically retiring so disabled that he can't function normally, but now there are no programs for him? His TBI isn't important enough for proper treatment? His TBI isn't the "right kind", so he isn't worthy of the care that others are offered? Am I the only one that thinks this is a problem?
I know there have got to be other people in a similar situation as him. I just haven't found them yet. It's really hard for him. He's been through hell and I hate that it's diminished because it wasn't combat. The two of us are out here kind of just floating around, loosly connected in several directions, but not actually fitting into any one place. I'm still trying to find where we fit.
Wednesday, April 26, 2017
I am present at every single medical appointment for my husband. Both out of necessity and out of desire on his part. I am responsible for getting him ready to go, driving him there and helping him remember what needs to be discussed and/or addressed at the appointment. As far as his mental health appointments, he has told them that I am his safe place and he feels more comfortable talking, with me present. This is something that had began while he was still Active Duty in the Navy and proved to be much more effective, because he was actually able to address issues with me there, where he had previously struggled to have any kind of successful therapy without me. His memory issue are a big reason for that and the fact that due to past trauma in the Navy, he struggles with being alone with people, especially medical people. He desired to continue this as he transitioned into the VA system. This wasn't an issue... until it was... last week.
As we sat down in my husband's mental health appointment, the social worker immediately brought up wanting my husband to do the appointments without me there. My husband asked why and told him that there was nothing he couldn't talk about in front of me and that he was much more comfortable with me continuing to be there. The social worker told him that if he wanted me present that he would have to start seeing a different provider for couples therapy (let's be clear, this has NEVER been "couples therapy"), but he wouldn't continue to do therapy with him unless my husband was alone. He put my husband right on the spot and he had to make that decision right then. My husband doesn't handle that stuff very well and it makes him confused, anxious and upset. He was looking to me with his "help me" face, but I knew I would labeled as controlling if I didn't tell him that he needed to make that decision himself. He didn't want me to leave, but he didn't want to have to start over with a new social worker either. He felt so put on the spot and confused. I left the appointment against my better judgment. I wish I hadn't, because I feel like he almost felt a sense of betrayal.
While in the waiting room, I requested to speak to the department head. I explained how uncomfortable I was with the ultimatum my husband was given and how he was put on the spot. But most of all, I was very upset that the social worker who KNOWS the trauma he had experienced by a medical person, that left him incredibly uncomfortable being left alone with people, especially medical people, would put him in that position. I firmly believe this social worker no longer wanted me present because I had addressed a few instances with him, where he was not properly documenting my husband's sessions with him. It's a lot easier to deny wrong he has done or mistakes he has made when it's only the brain injured patient, and not the caregiver spouse to hold him accountable.
After a lengthy discussion with the department head, I was able to speak to my husband when he came out of the session. He held it together in the session, but fell to pieces once he came out. He told me he didn't ever want to go there again. He told me how uncomfortable he is there now and that he knows that they don't care about him and he's just a number... another disabled veteran being pushed through the system. That was a set-back that he absolutely did not need! He struggles badly with trust and now they just added to that.
I still haven't been able to get my husband to tell me what he wants to do and how he would like to proceed. I need to talk to the department head this week, so he knows how we want to move forward with his therapy. How do I make him keep going there, when he's so uncomfortable? We're still waiting for Medicare and Tricare to fix their crap, so outside of the VA is still not an option as of yet. I'm feeling really unsure of where to even begin to fix this.
Monday, April 17, 2017
Monday, March 27, 2017
Those of you who followed me knew that my husband had become disabled due to the TBIs he had sustained. He has since been retired from the Navy, we have relocated to a tiny town in Florida, right over the Georgia line and we're now dealing with the absolute mess that is the VA.
Tony's conditions have slowly deteriorated a bit and I'm his full time caregiver.
The kids are still amazing and getting huge... and old. Our oldest son has a job!
I finally took control of my health a bit, after having the realization of how much my husband really needs me to take care of him. I've made huge leaps in my mindset, I've really strived to be more peaceful within. I do Yoga and Meditate. I have also, through strictly willpower, exercise and calorie counting alone, lost 76 lbs. (that's like... a whole 10 year old!).
We still have our old lady dogs, Emmie and Stormy (of course! they are family, they aren't going anywhere!) and now we have a 9 month old Chocolate Labrador named Harley, who we are training to be Tony's Service Dog (so far, so good).
I guess that update doesn't look like a lot... But it really is! I've missed writing a whole lot (publicly anyway, I've written a ton privately). I have so much to share about so many things. There has been so much good and bad. I really want to not only share the mundane things, but I also want to share things and issues that truly need attention, things that need to change, things that need to be brought to light.
I suppose this is really a quick "I'm back" kind of deal, I have a lot to tell you my friends. Stick around, I need you.
I will leave you all with a few pictures. Because, you know... that's what I do.
Monday, December 21, 2015
Banana Bread Muffins
3 c flour
1 1/2 c granulated sugar
2 t baking powder
2 t baking soda
1 t salt
1/2 c coconut oil (melted)
1/2 c coconut milk
6 medium ripe mashed bananas
2 t vanilla extract
Preheat oven to 375 degrees F.
In stand mixer, or using a hand mixer, whichever you prefer, blend bananas until smooth. Add oil, coconut milk and vanilla until combined well. Slowly add in dry ingredients while mixing the batter. Spoon batter into lined muffin tins. Fill close to the top. Bake for 18-22 minutes.
Yields about 2 dozen standard size muffins.
(I also make these in Jumbo size (pictured below). It is 1.5 times this recipe and the baking time is 35-38 minutes. This Yields a dozen.)
Allergy Friendly, Vegan Snickerdoodles
2 1/2 cups All Purpose Flour (I like Gold Medal Organic because it has no Barley)
2 teaspoons cream of tartar
1 teaspoon baking soda
1/2 teaspoon salt
16 tablespoons Earth Balance Soy Free Buttery Spread (http://earthbalancenatural.com/product/soy-free-buttery-spread/)
1 1/2 cups granulated sugar
1/2 teaspoon vanilla extract
2 eggs worth of prepared Ener G Egg Replacer (http://www.ener-g.com/egg-replacer.html)
1/4 cup granulated sugar
1 1/2 tablespoons ground cinnamon
Whisk together flour, cream of tartar, baking soda and salt.
In a large bowl beat together buttery spread, sugar and vanilla with a hand mixer until fluffy. Add egg replacer and beat well.
Scrape sides and add flour mixture. Mix with a fork until fully blended (I tend to use my hands)
Mix together coating in a small bowl.
Preheat oven to 400 degrees F.
Shape heaping tablespoons of dough into balls and coat them in the sugar and cinnamon coating. Place 2 inches apart on cookie sheet.
Bake for 8-10 minutes. The cookies will be puffed up a bit and settle while cooling. Allow to set for 5 minutes on the cookie sheet and then transfer to cooling rack,
Monday, May 11, 2015
I know you probably won't see this, but I hope you do. Yesterday, you encountered my family in the shoe department at the Lisbon, CT. Target. The family with the load of children. You gave us $20 and I really hope you heard me say thank you as you quickly walked away. If you didn't, THANK YOU! Your kind gesture means more than I think you realize. I was almost brought to tears.
The unknown is scary.
We also have a son with severe food allergies, so there are certain foods we can't cut corners on.