My Life

I woke up Saturday and started thinking…. actually, that’s wrong. I woke up Saturday because Domino refused to let me sleep any longer. Once I had gotten him settled down, I started looking at my phone, specifically the memories on Facebook from Saturday of years past. THEN I started thinking. Wrapped up in the memories from previous February 3rds, I realized how full my life has already been. There was a picture of me sitting on the bench of the SC Supreme Court, along with two friends. We were dressed in judges robes and holding the gavel. That’s a memory from Leadership Greenville. Two photo’s down you’ll find a picture of President Bill Clinton, whom I’ve met five times I believe. Then I started to think, I’ve met Hillary three times, President Obama once, President Trump twice, all of the candidates for President in 2016 at least once…. the list goes on. I’m also about to welcome home a beautiful puppy who was thrown from a car here in Greenville. She will be the sister to two of the best dogs anyone could have ever asked for. Dogs that have lived well past the average age of most dogs. Dogs that celebrity birthdays with parties, Halloween with costumes, and get Christmas presents. Dogs I’ve had for almost half of my life. I’m on several boards and committees, I’ve run for office, I’ve won an election, how many people can say they have stood for public office and won an election against two other people in a primary? I’m also the co-owner and broker-in-charge of my own real estate company. A dream that first landed in my head fourteen years ago. As I sat in my living room and look around I am surrounded by my photos on canvas, it’s a museum of places I’ve been. From Havana to the Grand Canyon, Charleston to Fort de France off the coast of South America. Pictures of my dogs. Furniture handmade by friends. I have the best friends. All of you. Plus a small core group of amazing people. A Range Rover key in front of me. A car that literally cost more than the mobile home I grew up in.

All of this, at 36.

I do have my bad days. I have days when I feel like that 15% chance I was given after my strokes has come back to bite me. Days when I feel the weight of the world is crashing in on me. Days when I don’t want to get out of bed because I either feel horrible or feel depressed. Days when I want to be the mouse, hiding in the corner, beside of my fireplace. Those are the days when I am glad I have surrounded myself with memories, and love.

So Thank You. Thank you for being part of my life. For being there every day when I need it, whether you realize I need it or not. For the hugs. For the flowers and cards a year ago. For everything.

You. All. Rock. Every single one of you.

Thanks for being in my life. Hopefully for another 36 years… that will be way better than the first 36!

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13 Months Later…

Later this week I will pass the 13-month mark, something that is still crazy to me. It’s crazy both how short those 13 months have passed and how I even survived 13 months. There were many times, especially at the very beginning, where I honestly wasn’t sure I would make it. Being me, I didn’t say to people “I think my time is limited”, but in my head, I certainly thought it. Then as time went on, I would feel a little more confident, mostly once we had passed 90 days, and then I would almost pass out, or have something happen that made me, again, wonder.

Heck, just last week I had two instances that scared the crap out of me and let to new issues, new diagnosis, and new meds.

So, where do we stand today?

I am currently prescribed ten meds per day, two in the morning and two at night. I am scheduled to see my neurologist in two weeks and have an MRI scheduled for next week.

My main issues right now is sharp pain in my left temple area. The main sometimes radiates down or out, but rarely, it mostly stays in the temple area. This is the reason for the MRI next week and has been pre-diagnosed and I am already being treated for trigeminal neuralgia. TN can be caused by a stroke and generally caused pains which radiate out from your temple and can be set off by stress, bright lights, chewing, etc.

Day-to-day I am generally okay, every once in a while I have a bad day or few minutes, but mostly I am back to 95%. Still can’t do a lot of fun things like roller-coasters, skydiving, scuba, or MMA Wrestling, but I am told I will never be able to do those things again.

As for the actual vertebral artery dissections, well, we don’t really know what their status is. I can say the pain in my neck is much less now than it was at 6 or 9 months. The pain I am told is indicative of a new clot forming, or healing… so we will go with healing on this one. That pain was quite harsh when I first have the VADs and only started to ease off around 6 months in. Even then it could come back with a vengeance sometimes.

I love silence now, just not sudden silence.

I find it is harder for me to concentrate now on anything if there is background noise. Prior to the strokes, I would always have music playing, now, not so much… BUT if background noise going on and suddenly stops, my heart drops and I get a rush of adrenaline, as if I have suddenly had a stroke or died and my body doesn’t know it yet. IT SUCKS. It’s the strangest way of getting scared… think about it… you get scared by loud noises.. (I do too)… but I also get scared of sudden silence.

The arm and leg pains on my left side happen less and less as the weeks pass, and now we are getting back to the normal everyday pains that I would have had prior to the strokes, a welcome change.

So… there is your 13-month update.  🙂

Thanks for following along on this crazy journey! Let me know if you have any specific questions!

3nottrans

Even so faith, if it hath not works, is dead, being alone. James 2:17

That’s right, Jesus said your prayers are not enough. Nor are your thoughts. Nor are your moments of silence. Jesus said you must work, otherwise, your prayers are dead.

Therefore, we must stop simply praying. That alone clearly isn’t working, as evidenced by the ever-growing number of mass shootings, with higher and higher death tolls.  We must find a way to stop this. Don’t say we can’t. No other country in the world has this issue and if we are to proclaim we are better than everyone else, we need to lead by example. Saying we can’t fix this problem goes in the face of everything this country stands for. No problem is too big, especially if it’s a problem with ourselves. We must teach respect again. Respect for our fellow citizens, respect for ourselves. We must stop electing people who tear others down. We must stop feeding into the politics of fear. We must stop being afraid of ourselves.

To say today is not the time to talk about this is unAmerican as well. Aside from ludicrous. If 58 Honda Pilots exploded today and killed 58 people, wounded 527 others, you bet your ass Congress would have already put Honda out of business. No one would be saying it’s too soon to talk about it. No one would be saying “let’s wait a week”…

It’s not too soon. It’s too late.

We must do better and doing nothing is not the answer.

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faggot.

Shocked? Not a word most civilized people use anymore, is it? Imagine hearing it walking down Broad Street in Greenville. Imagine it being directed at you by six football player sized guys.

On Sunday, I went to grab something to eat really fast before friends came over. I was alone, walking down Broad to Rick’s Deli. As I approached the building, just about the time I realized they are closed on Sunday’s, a group of six good ol’ boy’s were approaching. As they were directly beside of me one of them commented on my shirt, which said “America” on it. I THINK he said he liked my shirt, to which one of the other’s said: “I’m pretty sure he’s a faggot who’s protesting”. At the same time, a protest was being held at The Peace Center in response to Charlottesville. As it turns out that protest was ending at around the time I was downtown. It wasn’t until later I realized the counter-protesters that showed up with Confederate Flags on Main Street in Greenville were actually from Charlottesville.

I didn’t reply. Afterall, I was alone, and there were six of them. I was mostly in shock. I text TJ, Jil, and Lee. Jil and Lee both asked how they would have even known… and maybe they didn’t know I actually am gay, or maybe one of them has suspiciously great gaydar or had seen me on Tinder earlier. Other than those texts, I just thought about what I would have done had they actually approached me.

But, this blog really isn’t about me. This blog is about the racist, neo-Nazi, alt-right, Confederate Flag carrying assholes that called me a faggot. This blog is about the group of guys, each twice my size, that made me wish I had been carrying while walking down a street in the best damn town in the country.

If you think they showed up in Charlottesville because a statue of a Confederate General is being removed, you’re wrong. If you think they will go home if we just leave the monuments in place, you’re wrong. If you think it’s about heritage, you’re wrong. If you believe ANYONE in the alt-right group of Nazi’s that murdered a woman in the street is “a good person”, you’re wrong.

Below is a 20-minute story VICE News did about the events this weekend. They were embedded with the leader of the protest and had direct and up-close access to the events. You need to watch it. Everyone needs to watch it. Especially if you plan to give your opinion in any setting about the events that have happened and are likely to continue.

We have now crossed into a dangerous time in our country where lines are being drawn. Where it’s important to identify where you stand, and it’s important, more than ever, to stand firm in your beliefs.

It is becoming harder and harder for me to take seriously the friendships of people who support those who do not value my life or the lives of my friends. Your support of those people, including the President after his statements on Tuesday, makes it impossible for you to on one hand say you value my friendship, my rights, and my life, while simultaneously supporting someone who supports others who are actively trying to take away those things. The President’s remarks from Tuesday were divisive and emboldened those who’d do harm to others. If he thought his remarks were being misinterpreted he would tweet it. He has not. If you watch, even General Kelly winces at several points during the statement and can be seen once leaning in to hear the President better before wincing. This is NOT okay and it is NOT okay for people to blindly support him without actually hearing the words coming out of his mouth.

I will admit that the I believe President Trump was correct in weighing his initial statement on Saturday. In fact, it may be the most Presidential thing he has done thus far. At that time he had little facts to speak on. It can be argued that once the facts started to come out, he waited too long, especially for a President that tweets on a whim. When asked by friends my impression of his initial handing, I thought he was being over criticized. Then he blew that out the window. At this point, it is no longer about Hillary Clinton. Now, you either support him and what he stands for, what he says, how he acts, and what he does. Or you do not. It’s that simple.

I will also admit I do not support the removal of ALL Confederate monuments. I look at them on a case-by-case basis so to speak. The minute man standing in front of the cemetery on Main Street should not be removed in my opinion. A statue glorifying a Confederate General who was responsible for the deaths of over 150,000 Americans, that I can support the removal of. Should we erase history? No. The statues and monuments aren’t the problems, it’s the racist that feel they are somehow better than anyone who doesn’t look or believe like they do.

There is no comparison between the two groups that were in Charlottesville, VA. America cannot allow our leaders to equivocate or even tepidly accept or allow Nazism in our country.

We live, once again, in a country where I genuinely fear for the safety of my friends and family. That is unacceptable. That is not my America.

The pink triangle I used as the featured image for this blog was what Germans required gays to wear in Germany under the Nazi regime. As Americans, as humans, we tend to pretend things can’t happen to us or our friends. Then before we know it, it potentially right before us.

This is a time when it is important to make it abundantly clear where you stand and put yourself on the right side of history just as statements from Sen. Scott, Sen. Rubio, Gov Bush and others came out last night did for them. Show where you heart truly is, not just who you voted for.

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CCXXXV

Today is day 235. That crazy. I cannot believe I have, in theory, fallen asleep 234 nights since waking up that Tuesday morning. I won’t rehash that whole thing but 235 days seems crazy.

So where are things as of today? Literally, the exact same place they were at day 90. Unfortunately, my neurologist visit week went something like this…

“nothing has changed” … “no. nothing”

My neurologist says that he can see very little healing since the March 6th scan. In fact, the radiologist report says “identical” and “no change” several times.

What does that mean? Stress.

I still have to be limited with what I do in order to not risk worsening the tears. No heavy lifting. Nothing that causes my neck to move around. No massage. No roller coasters. Heck, I’m not even sure I could get on a go cart or bumper car.

It also means no relief of the neck pain for a while. No end in sight to the sound of a clogged water hose that I hear in my artery almost daily. No end to all of these meds, although he did tell me I can start coming off of the pain meds if I would like. They are there to keep me from, well, as the name implies, being in pain. So if I feel like the side effects are outweighing the benefits, I can start to come off of those. I do have to stay on the majority of pills though.

This is my new normal. He officially told me I am there. Basically the amount of pain, the amount of limited activity, the headaches, the dizziness… this is my new normal. Unfortunately, he said this also means I am have hit the end of the healing road. In fact, he thinks there is a good chance I will not heal past this point. He also thinks the risk of these scans are now out weighing the benefits and will not do another scan to check progress until at least next July, barring some change in my status.

So, if you happen to have a few vertebral artery dissections, which cause numerous cerebral strokes, expect that around the seven-month mark you’ll hit your new normal.

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Swishing bruit.

It’s 11:31 pm and I can’t sleep. It’s not that I’m not tired. I’m actually exhausted. My eyes are heavy. Everything is, was, off in the house. Now just this laptop is on. I know, I know, a laptop won’t help me go to sleep any quicker. Typing this blog may help though.

All day today I have heard a swishing sound in my head. It’s hard to explain. I’ve heard it before, a lot actually since my strokes, but today has been crazy. This evening even more than before.

Today has been a slightly off day, all day. The left side of my head has had a little more of a headache than normal. My left neck has been tight all day. Almost painful. Certainly uncomfortable. Even my left jaw has been sore today. The sound though, that has been the most anxiety causing.

I even just asked my VAD group on Facebook for some advice. “Bruit” is what it seems to be.  https://www.ncbi.nlm.nih.gov/books/NBK289/ talks about it a little bit. My concern being if the sound is coming from an artery occlusion, that would likely be what I would hear just before another stroke. If it is coming from turbulent blood flow, well, not much I can do about that.

The constant fear of the unknown. That’s what stresses me. The fear of the unknown, with the addition of neck pain, a headache, and “bruit” sounds in my neck and head… that’s what is keeping me awake tonight.

Five Months.

Today marks five months since my life changed. Five months since I almost lost my life. Five months since I found a new mission in life. Five months. Five long, long months.

These have been the hardest five months of my life. Every night I wonder if I will wake up the next morning. I pray as if I won’t. Almost every single night I make peace with the fact that statistically speaking I am still a walking time bomb and will be increasingly so for four more years. I think equally as much about how I will handle losing one of my dogs as I do about who will take my dogs if something happens to me.

I cry more.

I have changed. I have become infinitely more patient in some ways and have lost all patience with others. I have taken several steps forward and taken a few steps back. I have questioned the meaning of everything and found solace in knowing it’s not my place to know all of the answers.

More than anything, I have had to learn to be comfortable with being alone again. For the first several months I was hardly alone any. I couldn’t stand to be alone. Over the last month that has flipped to where I am alone an enormous amount of time. I’ve had to learn to trust myself being alone again. I’ve had to learn how to not focus on every little issue. I’ve had to learn how to sit in silence without my mind going to the darkest corner if can find.

One hundred and fifty-two days. Three thousand, six hundred and fifty hours. Two hundred and nineteen thousand minutes.

Five months.

3nottrans

I hate this!!

I’ve said before writing is somewhat therapeutic. It helps me get out what’s stuck in my head, and on occasion that makes me feel better! Well, here goes!

The last week or so I feel like I have taken another few steps back. I have been stressed to the max and that really has made it worse. Thursday and Friday were bad days for sure but today has really been a trying day. I try not to use the stroke card too much but today it would have been well used. All day I have felt bad/strange/strokie.

This morning I kept having this strange feeling and hearing this strange sound in my left ear. My left side is the stroke side. This morning I kept hearing what sounded like bubbles popping in a can. The same way when you have your head near a freshly opened Pepsi you can hear the fix… well that was in my head. Eventually, it got so bad I messaged my neurologist on the app. This evening Faye, his awesome NP called and said if it got worse to go to the ER, otherwise Dr. Rayes would call me tomorrow morning.

Then things somewhat escalated after dinner. We had just gotten home and turned on the tv. All of a sudden I had this feeling wash over me, like adrenalin. The scariest part of that is I was having those feelings back in November and December, both before the hospital and after I came home. It isn’t painful, it’s terrifying. For a millisecond you feel as if you may pass out, and this warm sensation rushed down your body from your brain to your toes. It sucks.

Alarmed, I told my friend that was here, text four other friends, and posted in my VAD Facebook group. One of the friends I text was released from GHS today after having a VAD and stroke. He said he had that feeling just today, and he was being released so that gave me some peace of mind. Then in my VAD several people said it happens to them when they get anxious. That too made me feel a little better.

Ultimately I took an anxiety pill and a hot bath… now I am laying in bed writing this blog… hoping I get tired and can go to sleep….

This sucks. This all sucks. Don’t get me wrong, I am thankful I survived and I know I am lucky… but this still sucks.

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I don’t like Mondays.

Well, Tori Amos and I have two things in common now. The first, we are both from North Carolina. The second, we don’t like Mondays.

This blog isn’t about Mondays though. It’s about yesterday.

Some days are better than others, I know I’ve written that more than once. And for the most part, I am making my way pretty well. Yesterday was not your average day though.

I had breakfast with Lee & Courtney, nothing uncommon there. I then had a strange little headache. Truth be told I’ve felt slightly off most of the weekend. After I breakfast I met with one of my clients and afterward ran a few errands and then went back to the office. The day was going well enough until around 4pm I lost all hearing in my left ear and just as fast as it went away a loud ringing noise started. I honestly think it scared me more than anything, and it scared me so much I almost passed out. I’m not a doctor but I think my adrenaline took over and for the same reason people pass out at the sight of needles, I think my body panicked and almost took me out.

After a few minutes I was okay, but still pretty scared. I ended up hanging around the office for a bit just in case anything crazy happened. Actually, as soon as it happened I got up and went into the kid’s room. I told Wyatt what had happened and hung out in there a few minutes.

Once I finally left work I went to the old house, which I am still finishing up moving from, and packed up the last few boxes. I started loading the truck and again, randomly, I got really lightheaded. Thankfully Lee and Teresa showed up to help with a few things in the basement and then we were on our way back to the new place.

I’m not sure if it is stress or the weather.. but something is up lately. I’m hoping it’s a combination of both and that as the weather improves and I wrap up moving this week I will once again feel better!

I still won’t like Mondays though.

3nottrans

18 Weeks

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At 18 weeks an unborn baby is about the size of a bell pepper. 7 ounces. 5 1/2 inches. I only mention that to remind myself how short 18 weeks actually is. On one hand, it seems like forever. 3050 hours. On the other, it’s just a flash in time, a blink of the eye.

On one hand, it’s crazy how much has taken place. I still find myself getting lost in it all. Wondering how I survived? Why I survived? What if I hadn’t gone to the chiropractor? What if I hadn’t set an alarm for 7 am that Tuesday and had slept until 9 am? There is a very real chance I would have missed the two strokes that Tuesday morning, just as I had missed the previous dozen, and based on what every doctor has said, I wouldn’t have survived the next one.

I find myself wondering what my funeral would have looked like. What will it look like? Who would go? What songs would be played? Where would Domino and Graycie Mae have ended up? Would it have been painful?

These aren’t really thoughts a 35, now 36 year old should have. Nor are the bills or the medical chart. I shouldn’t constantly question before falling asleep if I am wearing the right boxers in case I’m once again not able to put on anything else before the EMTs arrive. Is my house halfway decent just in case? Does the house I’m moving into this weekend have ample access for an EMS truck or paramedics? Is this headache a stroke headache or a new headache? Coincidentally the stroke headaches now cause less of an internal alarm than the new ones. Yes, there is a difference. Yes, I can very quickly tell you exactly which it is. Yes, a stroke headache is less of a concern for me now and the new headaches are what raise an internal alarm.

I have tried to not mention “stroke” as much because I am sure my friends are tired of hearing about it, but I’m sure not 5 minutes goes by without something in my body causing my brain to scream STROKE. I’m not saying I think I’m having a stroke all of the time, actually the overwhelming majority of the time I now feel fine, however, very little time passes without some pain or noise in my head reminding me of it.

I was warned in the hospital that the majority of stroke survivors become depressed and at the time I couldn’t understand why. After all, I was going home, without a walker, in spite of the physical therapist suggestion I have one. Sure I was going to have meds and bills, but who cares, I’m alive. 18 weeks later, I get it, my mind doesn’t stop going over the what if’s in my head. I find myself consciously making decisions about random everyday things based on the fact that I could be a ticking timebomb and at any second my brain or heart could go rouge.

If you can’t already tell, I’m using this blog to vent a bit. It’s not at all dark clouds and rain drops. I am so much better than I was. I finally feel healthy a good majority of the time. This is not in the past yet for me though. As long as I am taking all of these meds, as long as I am still under doctors care, as long as I still have the prospect of invasive procedures, as long as I can’t just lay down at night without wondering “what if”, this won’t be in the past for me. It may be easier for me to not mention it all of the time, but it’s still at the front of my brain and on the tip of my tongue. I’m better at catching my balance quicker, finding words a bit faster, and knowing my limits, but just because others don’t see these things as easy, doesn’t mean I’m not still fighting like hell to not trip over my own feet sometimes, or find the next word that’s on the tip of my tongue but just won’t come out.

Next week I will attend my first Stroke Advisory Council meeting in Columbia, the DHEC council I was appointed to in January. My bio is full of boards and committees, but this is by far the most powerful council I have ever served on. The by-laws and mission statement are almost overwhelming. It’s something I’ve looked forward to since my appointment; being able to sit in a room, on a council no less, with doctors and medical professionals from across South Carolina, implementing policies and procedures for South Carolina hospitals on how best to deal with stroke patients, making decisions about granting hospitals stroke facility certifications, levying fines for hospitals that break the rules. I’m very excited to put my experience to good use and be in a position to vote on policies as an acute stroke survivor.

Next week I will also attend my first GHS Stroke Advancement Committee meeting.  Then in May, which is Stroke Awareness Month, the South Carolina Hospital Association Journal will feature a story about my last 3050 hours but mostly focusing on the three weeks in November/December that changed my life.

The last four months have taught me a lot about myself. I’m not as easily broken as I thought and at the same time, I’m way more fragile than I ever imagined. I’m getting through it. I’m getting better. I’m still not there yet though — and that drives me crazy.

3nottrans