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

Day 77, an update.

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When I left the hospital back in December, I had one major date to look forward to. A sort of goal was set for 90 days out from my stroke. March 6th to be exact. As it turns out, a lot of stroke recovery is setting obtainable goals and reaching them. Today is day 77, I am almost there.

Around the 90 day mark, they do new CT and MRI scans. They look to make sure you are healing correctly, to make sure you have no additional clots forming, and have had no additional strokes. Statistically, I have a 30% chance of having another stroke, a heart attack, or dying within those 90 days, down from slightly over 50% in the first 30 days. Within the year following a stroke, I am at a 9.3% risk of having an additional stroke, heart attack or death. Death is the highest of the three, at 5.1%. Ironically, each remainder year, the chances of death from a stroke or heart attack remains at 5%, up until the fifth year.

The statistics aren’t following beyond five years, mostly due to lack of resources to continue studies.

Next Thursday, I will do my 90 days follow up scans. I cannot tell you how excited I am to do them. Every single day and night I have something that scares me, I think only of reaching that milestone so that my neurologist can looking to my brain and tell me exactly what he sees. In fact, about threes ago I was so bothered by a few things that had I asked if we could do my scan early. The short answer, no. The long answer being, I don’t think we need to do it early.

Tomorrow, day 78, I will visit my EP cardiologist. The strokes caused all sorts of other issues, sort of a cascading effect. A cardiologist referral from my neurologist had led to me wearing a heart monitor 24/7, at least until day 90, and the additional scrutiny has led my primary cardiologist to conclude an ablation is in my near future. The best way for me to describe an ablation is they go into my heart, find a specific nerve that is causing us some issues, and cauterize it. If all goes well I spend the night in the hospital and hopefully go home the following day.

As it turns out, as scary and life changing as this has been, in some way it may have also been life-saving, seeing how it led to the discovery of other issues.

Since the last blog, I have also been asked to serve on a few boards. The GHS Stroke Advancement Council, which I am excited about working on in the coming months in helping bring attention to strokes in younger patients. The board of the Greenville Polo Classic benefiting the GHS Neurological Institute, which I know you will be hearing more about soon. I am extremely excited to be helping raise money for the institute that saved my life. As well as the SC DHEC Stroke Advisory Council. The Stroke Advisory Council was the result of a 2011 Bill that appointed a council to come up with regulations and guidelines for stroke care in SC. The council is responsible for among other things, naming Stroke Centers in SC and overseeing implementation of stroke policies within the SC hospital system and EMS system. The council has one position appointed by DHEC for an acute stroke survivor. As it turns out the previous person filling the seat had resigned within the last month and DHEC reached out to me.

So, there is your day 77 update. lol. I can always tell when I’m not updating my friends enough because more and more people start asking for an update. 🙂 I will let everyone know how things go next week! I am seriously more excited about next Thursday than I was Christmas this year, so as soon as I know something, you’ll know.

3nottrans

The Strokes

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Everyone has asked “What happened” or “How things happened”, so I figured two things. 1: It would be easier to write a blog so everyone could read it and 2: If it can prevent this from happening again is worth taking the time to sit down and write this.

One day, during the week of Thanksgiving I developed a stiff neck. At first it wasn’t terrible but quickly got that way. So, I decided it was the holiday season and I would “treat myself” to a massage. So on November 25th, I went to get a massage that focused on my neck and as I was leaving stopped next door to get a quick adjustment from a chiropractor. What a mistake!

The next day my neck pain had moved mostly to a splitting headache that was extremely bad. It made it difficult to focus on things but I managed. I generally have a high pain tolerance and ironically I tend to complain more about little pains than major ones. I just shut up and push through.

Finally, on November 26th I couldn’t take it anymore without a doctor. I called their office (it was a Saturday) and was told I could get an appointment for first thing Monday morning. So on November 28th, I went in, told the doctor the issue, and he said he thought it was likely just “the crook”, something you get from sleeping wrong. I said I knew what that was but this had been more than a week… he said sometimes that happens and wrote me two prescriptions.

Over the next few days nothing really got better. My head was hurting all of the time and I couldn’t take enough Tylenol. December 1st I called the doctor back and made yet another appointment. This time I was told we would do fasting labs so I shouldn’t eat after midnight. Later that night I went to a soccer game w/ Courtney. At one point my head started POUNDING… I felt very dizzy… but I didn’t say anything. Suddenly Courtney looked over at me in a panic, her exact words were “you look like you are dying — there is no blood in your face!”. I chalked it up to having not had much to ate much that day. On the way home I stopped and grabbed McDonalds and felt a little better.

The morning of December 2nd, I went in, and this time I was sure to mention getting dizzy. The doctor told me it could be those two medicines. He said he would change me to a different medicine and if I was still having problems the next week to call him and he would send me to a physical therapist.

The next few days the headaches seem to come with more fervor and intensity. For some reason they seemed to be worse just before bed. In my heart I felt like something was really wrong, more than just a pulled muscle, but the doctor twice had assured me I was fine.

Monday December 6th things got worse. I stayed at the office most of the day but my headache was so bad at times I laid my head down on the desk and my vision was a little blurred. I had a showing that evening in Cherrydale and decided to go from there to the new UrgentCare center. The doctor there did four x-rays and then told me he was sure it was Occipital Neuralgia. In other words, the nerve that runs from the base of my skull to behind my eye was inflamed. He gave me two shots and scheduled a follow up the next day for a nerve blocking shot. I was still super concerned and can still see him saying to me “I’m not, I have an MRI machine right here, if I thought it was needed I would use it.”  I left UrgentCare with two prescriptions and went to RubyTuesdays to eat.

December 7th…. When I woke up I reached over for my phone. I knew it was not yet time for my alarm (I never wake up before my alarm) so I wanted to see what time it actually was. It was just a few minutes before 7am. I only know that because my alarm went off before the paramedics arrived. As I turned my body the entire world turned.. and didn’t stop… at all. I instantly felt like I, all at once, was the drunkest I have ever been and most hung over. I closed my eyes but everything was still spinning. I threw the cover off of me and broke out into the most intense sweat… I don’t sweat much anyway… so I would venture to say this was more than I had sweat during either of my two previous half marathons. That was what tipped me off that I had a bigger problem. For some reason, I’m not exactly sure why, I thought I needed to go grab my thermostat. As I went to put my feet on the floor my body sort of threw me forward towards the door. I more or less bounced down the hallway from wall to wall until I got to the bathroom. The strangest thing about that is I sort of “watched” myself from above me. I don’t know how to explain it except I felt like I was above my body watching what was happening. I now know that is stroke specific and there is some scientific reason I felt that way… at the time, it was scary. Once I made it into the bathroom I fumbled through the basket where the thermometer should be and started to realize I was fading… and fast. I ended up throwing things around the bathroom… Lee said when he came into the house the bathroom looked like an intruder had been in there, my drawers and closet stuff was everywhere.

Around this time I started having this back and forth in my head. One minute I knew I needed to get to a hospital… the next second I thought I was fine… just over reacting. Again, apparently there is a scientific neurological reason for that. In my clearer thoughts I did realize I needed to get help… and fast. I made it back down the hallway and onto the bed. As long as I laid flat I didn’t feel quite as bad, so I tried to lay on the bed, still. I called Courtney a few times, one of my officer friends, and then called Lee. When Lee answered all I said was “I’m calling 911. Come to my house.” and hung up.

As I talked on the phone to 911 I told them I thought maybe I was having a heart attack. This thought only came to me after I had a pain so strong that my entire body wretched. It felt like my entire body was trying to fit into this square on my chest. My knees, legs, feet, head and arms. Thankfully I had 911 on speaker laying beside of me. I told her I couldn’t talk or breath and she said just stay with her. I soon heard sirens.

When they first got to the house they couldn’t get into the door. I swear it sounded like they were about to tear it down. I had told them to come to the back door but that message wasn’t communicated. Lee said 2 ambulances, 1 fire truck, and 2 cops were here when he pulled up. He said my living room and dining room were filled with people. I only saw two. I kept my eyes shut most of the time because the pain was so bad. I laid back in the chair while they did an EKG and started an IV. The the head EMT helped me lean forward so he could listen to my breathing. I started throwing up and instantly I could sense their concern. They eventually got me to an ice cold and wet stretcher that was at my side door and loaded me into the EMS. They did ask where I wanted to go and I said St. Francis. They asked if I meant Eastside and I gave a thumbs up. On the way to St. Francis I threw up several more times and they started giving me meds to stop that.

Once at St. Francis the doctor on duty came in instantly and started working on me. They did several test but couldn’t figure out exactly what it was. He then came in and told us he felt like he needed to be an MRI but radiology may not think it was necessary for me. He said I may be having a-typical stroke symptoms but wasn’t too concerned. Radiology did do the MRI, thankfully, and a few hours later he walked back into the room and without an prep just said “You’ve had two cerebellar strokes today and clusters of strokes previously. We need to move you to Downtown because all of our rooms here w/ the equipment we want you on are in ICU and are full.”  I immediately broke down but even then none of us in that room realize the gravity of the situation(s) that were about to happen. My heart rate spiked and the doctor had to give me something to calm me down. They got me calm, packaged up and sent me to Downtown.

At Downtown I had a great nurse but couldn’t sleep. I was scared to fall asleep. They gave me some meds to knock me out and I woke up on December 8th at St. Francis Downtown. First thing in the morning they started doing more test. All we knew then was I was having strokes but no one knew why. Not too late in the morning the doctor came in and said one of the test showed a vertebral artery dissection, a tear, in the artery that feeds the back of my brain. She said it was her opinion that GHS needed to be called in on the picture and asked me to sign something saying she could loop them in. Not too long after that the neurological surgeon at GHS ordered more test. Late in the night on Wednesday I was told that those test revealed I had a blood clot at the base of my brain. They GHS doctor had essentially taken and at the moment, I would only be moved to GHS if surgery was warranted.

I woke up on December 9th at St. Francis Downtown but it wasn’t long until the doctor told me I needed to be moved. I had no clue what this meant… would I be having brain surgery? She didn’t either but felt like it was just so the GHS team could see me. What no one prepared me for was where I was being moved. During the ambulance ride I was told there are 4 (or 5) levels of care an ambulance has. I was put at the highest level which required a specific person ride in the ambulance with me. Once at GHS they took me to the Neurological Trauma ICU. I went from a private room at St. Francis to a room in GHS that was HUGE and set up in a way that surgery could take place. The room sealed. Anyone coming to see me had to go through a series of cleaning procedures and they gave me a sponge bath as soon as I arrived. Honestly, that was terrifying. I was assigned two nurses and met the neurologist and his NP that would take care of me. I’m not kidding, I had two nurses that were station at the door of my room. Nobody warned me about that level of car I would be getting and it terrified me.

That night I couldn’t sleep… they also couldn’t really give me anything to go to sleep. They started a stroke protocol that required them to wake me every hour and ask me my name, my date of birth, who was President, level or pain, and to hold my hands up, then my feet… etc. My head was still killing me but never made it above a 7 while in the hospital. December 10th, I was in Neuro Trauma ICU, though, I didn’t really “wake up” there.

Later in the day the doctors did another MRI to see where things were. I was told this test at 5pm would be a defining moment in the stay…. were the meds working or not? Around 6:45 the doctor called my nurse’s cell phone and asked to speak to me directly. He then informed me that I had two vertebral artery dissections and that one had been hidden by the blood clot. The clot was now gone, thanks to the meds, and they were going to switch me from one IV drip to a new medicine. Let me just say–this doctor is amazing. Both him and the NP spent hours with me over the several days I was in ICU, letting me ask as many questions as I could. At some point, once I had finished all of my questions, he sprung it on me that I have a hole in my heart, but said I was born with it so it’s no concern. At 9pm Saturday night they started the new med and at 11pm they turned off the other IV. I know these times because they were very specific with them. They even had an alarm set for 11pm to turn it off.

December 11th. Aside from being in of the most critical care units in the Upstate, things were a little better. I didn’t feel quite as bad, and they helped me out of bed and into a chair. They did blood work around 4am and the doctor said he felt good that the meds were doing their job. He let me be moved out of ICU late that night into the Stroke Center and honestly I thought I would sleep well… I didn’t. It was a very long night.

December 12th.  The morning started early. The NP, then the neurologist, the Stroke Center Director, the Head Nurse, and several others were in and out of my room. Everyone seemed sort of curious about my situation. A 35 year old guy who based on all outwardly appearances is healthy…. who runs… rides his bike 40 miles at the time… what was all of this about?  Eventually they let me come on on the 12th with a few guidelines as to what I can and cannot do.

Each day has been better than the one before, which is amazing to me. I’m finally to the point where I can go to sleep without being sure I’m going to have another and not wake up. I can honestly say this has been the most terrifying thing in my life. I already look at things in a totally different way than I did before.

What caused the strokes? We know for sure that the strokes were caused by the two tears in my arteries. My body was trying to heal those tears by clotting like a scab and throwing off blood clots into my brain, which were causing the strokes. How many I had they didn’t know for sure, other than a lot, why the two Tuesday were bigger they also weren’t exactly sure. What they were sure of is that some trauma has happened to my neck. They all, every single person in the ICU, said they feel reasonably certain it was caused by the adjustment I had the day after Thanksgiving and that the very least it was made substantially worse. He told me I could never do anything that put that sort of pressure on my neck again, such as skydiving (thankfully it’s off my bucket list already) and roller coasters. He also told me to be very careful with my neck, especially in the near term while I am on all of these meds, and to never, ever, ever get a neck adjustment again. Ever.

How am I? They told me I would have to get used to a new normal, which I’m doing. My neck, my throat, my head, my arm (left) and my leg (left), all hurt at different points. Sometimes worse than others. I get dizzy and that headache feels like someone is stabbing me…. but… I’m getting used to it so it’s not overwhelming. I’m able to walk around more and I’m fairly stable (mentally and physically). They said most of the pains and dizziness should go away in the next several weeks or months. I trust they are right. Even if they aren’t though, I’m alive. That’s something they all drove home to me several times, that I very easily could have been a vegetable or dead. The NP said almost daily “I hope you know how close you came to being a vegetable and how lucky you are.”

I sort of compiled this as much as I can, leaving out a few things here or there but laying out a timeline. The one that that was consistent and has been consistent through this all is that my friends have been awesome. I have heard from so many of you by way or text, messenger, email, or comments. Every time I would read the comments on my wall I would cry, happy tears. I love you all. You all rock!

If you have any questions, at all, please, please, ask. If I can give anyone any advice that prevents them from having to deal with this I will.

Thanks for all of the kindness and prayers,

3nottrans

 

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.

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My birthday wish.

My 35th year has been a roller coaster which mostly headed downward. A few high points were mixed, though…. my road trip from the top left corner of Washington state home, starting my own team and deciding to make a leap and open our own office. I’ve also gone into business with some of my best friends. I’m not going to list out any of the downward rides but they started in mid-March and for me hit a critical moment on December 6th.

By now you know my story… I had several strokes in December…. I was bounced from hospital to hospital and eventually landed in GHS Neurological Trauma on December 8th. If you’ve been around me since then you know how much love and respect I have for everyone in the Neurological Institute at GHS. They saved my life. Period.

As a result of my strokes, I have been asked to join three boards or councils. One with SC DHEC, one with the GHS Neurological Institute, as well as the board of the Greenville Polo Classic, benefiting the GHS Neurological Insitute.

So here is what I want for my birthday…

I have a personal goal of wanting to raise $10,000 for the GHS Neurological Institute this year. As it turns out, I did not have insurance on that day. My insurance literally ended the night before. As a result of this crazy circumstance, in which even GHS was shocked that my coverage ended roughly 7 hours before I was rushed to the hospital, GHS as forgiven over $16,000 in services. That figure was prior to my most recent round of test (a stress test and a Contrasting CT Scan), so I am sure I am above $10,000 now. GHS has placed a sponsorship on my account and through December 6th, 2017, my bills will be routed through them first and I will owe roughly 25% of the billable cost.

I want to repay them. $10,000 isn’t enough, but it’s a start.

I have some amazing friends. So I am asking you, to make a contribution, in my name, to not only thank GHS for saving my life, but for saving the lives of so many others.

How can you do this so that we can keep track of the funds?  Two ways:

  1. GHS is in the process of providing me with an easier method but for the moment, go to www.SupportJames.com. That will take you to the GHS Giving Page. Under gift information, you will click “Make this gift on behalf of an organization” an input: *PoloClassic #TeamJames and then click the “Direct my gift to” and choose Neurological Institute under Neurology. If you could please let me know if you choose this option. GHS has said they will give us updates, but they will not be instant, maybe even not weekly, so I would like to be able to keep a running total.
  2. Mail a check made out to GHS Neurological Institute. You can mail me this check and I will turn them in together. Mail them to my office: Keller Williams Modern, 700 E North St Suite 12, Greenville, SC 29601

Literally, nothing would make me happier than to hit a high number for my birthday.

xoxo,

james