jstew34

[jstew34]

Battling loneliness while isolating

Day after day after day after day of isolation has left many feeling extremely lonely. It’s not that these folks are depressed, anxious, or worried. It’s that they don’t have an outlet to communicate in person, to include physical touch, whether or not the relationship is platonic or intimate.

There are some things a person can do to attempt to alleviate the feeling of loneliness. 

One of the top ways to feel connected is to care for others - yes animals count.The human/pet relationship can be as strong as parent/child relationship and should not be discounted. I don’t suggest getting a pet just because one is lonely. Remember that the pet will be there when the loneliness subsides - and will still require care.

Know the difference between loneliness and solitude. Loneliness tends to be draining, while solitude feels peaceful and creative.

Work extra hard to get adequate sleep. It has been observed that people suffering from loneliness tend to have trouble falling asleep, will wake frequently, and will feel sleepy during the day. Being sleep deprived, no matter the reason, negatively affects someone’s mood, can depress the immune system, and can be physically draining. 

Assess your life and try to determine what’s missing. Take time to ask yourself - “What do I want?” Be honest and don’t feel guilty about what you need to feel connected. Some will want a relationship - either platonic or intimate. Be careful that if you want a relationship that you don’t enter into one that could be damaging to you. 

To state the obvious, one needs to take steps to connect with others. This can be difficult, especially if the loneliness has been present for a long time. Use social media to find a group that meets, whether in person or online. Be careful, extended loneliness can make you feel more negative, critical, and/or judgmental. Take the new relationship slowly and be honest with yourself and with the group, once you are comfortable to share your feeling of  loneliness with others.

Lastly - allow yourself to have bad days, everyone has them. A good friend of mine gave me the best advice, she told me to allow yourself to have a pity party when feeling down, but that pity party can only last twenty-four hours. After that you need to move forward and make a positive change. But she cautioned, if you are not able to move forward, then it might be time to talk to a mental health professional

As humans we are social creatures and we crave the company of other humans. The isolation of covid-19 can easily affect your mental health - don’t be afraid to admit it. This might be the perfect opportunity to reach out to others. Be honest with yourself and take time to reassess as you move forward. Who knows, this pandemic might actually allow you to have positive personal growth.

[jstew34]

The power of negative words

I’m writing this because I feel it is time to exorcise some demons, with the hopes of moving forward. I have put it off for too long. One reason I haven’t done anything is because my physical health was more important than my mental health. I know that sounds strange, but to someone who is in a failing body, you have to pick and choose your battles.

During the past decade I have become very adept at hiding my true feelings. If I didn’t stuff my emotions down I knew there was no way I was going to survive, or so I thought. For me the bigger reason is why did I do this - self preservation and the misguided belief that the things being said, were true, or at least I thought they were.

So what are some things said to me that would cause me to hide my real feelings for this long of time:

You are a burden

You look fine, it sure beats cancer

Be happy with the with your disability rating - even though it didn’t address the actual issues

No one else will want to be with you

I was only with you because I felt sorry for you

You deserve what happened

You are lazy

Your life is boring

The above examples are not everything that’s been said to me, but they are some of the most hurtful. Some of the things were said by people I loved, some by medical professionals, and some by people I thought were friends and/or people I was trying to have a relationship with.

I allowed myself to believe these hurtful words. When these things are said by some of the most important people in your life, you can understand why I believed. Once my self confidence was destroyed, it was easy for me to believe that I was all of those things.

But here is the thing - the same people saying those hurtful things were also the same people who knew the effect(s). A casual friend had no idea, because I got really good at hiding these emotional bombs. If by chance someone thought I wasn’t my usual self, it was easy for me to convince them that it was physical problems that had me bummed out.

Why discuss this now, it’s actually quite simple, this is the best I have felt physically in the past ten years. Because I feel good physically, I now have time to think about other things, and sharing the mental baggage will help me to progress. My goal is that this admission will help to strengthen current and future relationships.

I know this one post will not fix everything and I am ok with that. But by sharing, it takes away the negative power. If you want to ask me more about this, please don’t hesitate. There is nothing for me to be ashamed of, and if this can help someone else to re-examine their mental health concerns, then I consider this a success.

[jstew34]

A soul crushing day

Today was supposed to be a good day.  It has been ages since I have been around someone that I was excited to see.  Unfortunately, it didn’t materialize, and I am not sure why.  I know this shouldn’t be that big of a deal, things happen.  But the reason I feel like my soul has been sucked out is because of someone that passed away in 2006.

April 14, 2006 my dad passed away from lung cancer.  April 16, today, he would have been 76.  I know this will sound shitty, but I’m not sad because of his death.  Actually, I don’t feel one way or another about it. We never had much of a relationship, other than the formal dad/kid dynamic.

My dad wasn’t home a whole lot when I was a kid and when he was he really wasn’t. He was an over the road truck driver which meant I could go weeks without seeing him. As a kid, I was always promised that he was on his way and would be home on “such and such day”. That day would come and go - without dad showing up. 

I understand he was doing what he had to to make money to support a family. But that doesn’t excuse the constant let down of him not being there. School plays, Sunday school choir, taking me to my first day of school, teaching me to throw a baseball or ride a bike - he missed it all. As I got a bit older, the teeball games, basketball, football, baseball - all things he missed. I don’t know if he actually missed being there. The normal response would be “Of course he missed being there and he was sorry” but I never once heard him say it. 

When he was home - well the best way I can put it - he was an asshole. He thought being home meant he could hang out at the bar with his dad (my grandpa) and they would absolutely get pass out drunk. On the nights he wasn’t completely wasted I would be treated to physical and mental abuse. He thought it was funny to come into the bathroom and pin my head under water. Or he would come into my bedroom, reeking of booze and cigarettes and expect me to be happy to see him. Since I wasn’t happy I would be pinned down, he’d put a pillow on my face and scream at me, telling me that I needed to treat him with respect. It’s hard to treat someone with respect when they do absolutely nothing to earn it. I still remember the awful fights/arguments that my parents would have. Being the oldest usually meant that I got put in the middle of it. A kid should never, EVER be forced into situations like that. 

Because of my dad, I pretty much hate holidays. Christmas Eve meant Happy Hour at the bar. Then I got to see my folks fight cuz he would come home drunk. Other holidays we would get together with his family (we all lived in the same town) and I could witness the boozing with him and my relatives, usually ending in some big argument. But the absolute worst, was my birthday. My birthday is two days after his. You would think an adult would defer to the kid’s birthday, but not my dad. Oh no, he had to have his own cake and if he didn't get it I would have to listen to him piss and moan about it. After awhile I was actually happy when he wasn’t home for my birthday, because I didn’t have to hear him turn it into a competition.

By the time dad stopped being a truck driver I was a freshman in high school. That summer our baseball team made it to the championship game and I was the pitcher. He actually made it to the game. That game was easily the best game I ever played and we won. He barely said two words about it as we drove home. I was so happy and just wanted some acknowledgement or validation, instead I got silence. My teammates and their parents congratulated me, but not my own father - sorry but that’s fucked up.

My sophomore year he decided the best thing to do was to move to a farm and try his hand at being a sheep rancher. Our relationship became more strained, but the difference was the fact I was bigger and stronger than him. So when he would attempt to be a bully, I had had enough and fought back. My brother got to witness many an altercation between us. It didn’t take too long for my dad to realize if he put his hands on me I was going to beat his ass. Our relationship became one of just getting along.

Fast forward to 2004, in between my graduation in 1990 and then, we would go months, sometimes a year without speaking to each other. When we did communicate it was nothing more than impersonal pleasantries. In 2004 he called me, out of the blue, and told me he had lung cancer. 

So I did what I thought was the right thing - I insisted he move in with me. My parents were divorced and my dad was not taking care of himself. He had lost a lot of weight and there was no way he could have cared for himself. He moved in and it was evident that our relationship was over. It was over because he would talk on the phone to people he had a casual relationship with and would end the call with “I love you”. Guess how many times he said that to me in two year - yep zero.

He saved his last “Fuck You” to me right before he died. He was supposed to fill out paperwork concerning his final wishes, he didn’t do it. As the end was near, he was asked by hospice what his wishes were - instead of saying what he wanted, he looked at me and said “You know what to do”. A kid should never, EVER be forced into a decision to terminate a parent’s life.

Ok, so I got all that off my chest - whew, but what does that mean in the present day. After getting let down, repeatedly, it is soul crushing to this day when plans are made and the other person doesn’t show and/or doesn’t call/text/email to cancel. I’m sure many are thinking - “Well of course the other person doesn’t know about your past, so cut them some slack” - you are correct. So what I have done is to implement a “three strikes” mentality. If I ask someone to do something, and I get blown off I will ask only two more times. After the third strike, I’m done. I refuse to play games or compromise when it is too easy to contact someone with the technology at hand.

Alright, I’m going back in my isolation mode. If you read this, well I’m sorry it isn’t upbeat. I know it’s dark, twisted and not something that’s easy to talk about. No comments are needed. Maybe this will help some to better understand why I act the way I do. I’m trying to get better and to be more forgiving, but it’s damn hard.

[jstew34]

Secrets we keep

The past few days I have been thinking about the following: Do people really know people?  In other words, does a brother really know his sibling(s), do partners really know their significant other, do best friends really know….you get the idea.  

What do I mean by really know?  I am of the opinion that everyone has a secret, hidden desire, something they are ashamed of, embarrassed, whatever it might be, to share.  Now you are reading this thinking, “But I’ve been married to Jerry for twenty years, we dated all through college, we have two kids, a mortgage, a dog, and a fish - of course I know everything.”  But do you really?  

Let me give a few examples:

Do you know if your partner/friend/sibling watches porn?  If so, what’s their favorite, if not why don’t they?  If they do, why do they?

Do you have something about you that you don’t want anyone to know about?  Something you might have said or did?  Maybe you had a few extra pounds and now rock a six pack, so you don’t want someone to know you were not a physically fit specimen.

Do you really believe in God?  Why do you or don’t you believe? Are you worried that if you were honest that your significant other would know longer love you?

I could keep going with examples - like, do you let people know that you cry during movies? - but I bet you understand.

I think I can safely say that all of us keep things hidden from others.  The thing(s) we keep hidden could be benign to the other person, but to the person keeping it hidden, it’s obviously important and carries enough weight that one doesn’t want it known.  

If we say we have love and understanding then why would one keep something secret?  Why are we afraid to lay bare all for someone else to see?  Please don’t think I am suggesting you walk up to your yoga partner Susan, who you see once a week, and share that you enjoy smoking bath salts, drinking snake venom, watching the Golden Girls while wearing a mask of Bea Arthur, in the nude.  Let’s be honest, if that’s your thing, you are going to need a really secure relationship before sharing that nugget.  But once you are in a secure relationship, would you be willing to share?  Are we afraid to share all because we are afraid the other person will think less of us?  Is it a control thing?  It could be as simple as the secret is something that is illegal and there is a worry that sharing would cause the other person to leave.

I started thinking about this for a couple of reasons - we are seeing more and more people emboldened by our current political climate.  People have gotten so brazen they are now proudly declaring they are racist and believe it is ok to treat others poorly.  I have a few other reasons, personal in nature, on why I’ve been thinking of this.  I’m not ashamed to say what those things are, but I doubt if people who are involved would want those things out.

Once those secrets come out, and they usually do, then what happens?  Can a relationship survive the information or is the act of keeping it secret so damning there is little hope in salvaging the relationship/friendship?  What determines the damage?  Who determines the cost, the person who held the secret, the person who finds out, or is the cost determined by society?  If society determines it, why do we care about society’s say?

I realize I’m putting a lot of questions out and am doing very little to attempt to answer them.  To be honest, it is on purpose.  My views on something are going to be different that yours and therefore I don’t want muddy the bigger picture by being judgemental.  See I might not have a problem with you smoking bath salts, but I might be a devout Church goer and the fact you don’t believe in God might be too much for me to bare.

What I would like you to take away from this - are the things you keep hidden really that damaging?  Are you sure you can’t trust your partner, sibling, best friend, or society with the information?  Are you worried the other person would no longer want to be with you with they knew the truth?

How would you react if someone decided to be 100% honest with you, are you ready to accept the person as is?  That can be a hard question to answer, especially if we don’t know what the secret is, but maybe that helps to lead us to the answer.  If I feel that I don’t know how you will react, then maybe I am willing to keep the secret and hope you never find out.  Is that a trust issue on the person keeping the secret?

Let’s be real - life is hard.  We have so many people passing judgement on us daily, in the real world and on social media.  Often times, those judgments really don’t hold a lot of emotional weight, especially when thinking about the online world.  But when thinking about the people who we value, who we see daily, they are the ones who we worry about finding out.  

Maybe the answer to all of this is to get a pet.  A pet loves unconditionally and would care less if my favorite singer of all time is Slim Whitman - Vaya Con Dios.

[jstew34]

What I learned this year..

Well this is going to be my - What did I learn this year? Some things I learned are nothing more than reaffirmations - some good some bad. But I am pleased to say I did actually gain some insights into who I am and what I expect out of others and life.

Where to begin, that’s really the tough part. Difficulty arises because it’s not like life is laid out in some neat bullet comments, in outline form, with a great section of references. Since life is messy, I expect this to also be a bit mess, haphazard, or at the very least, it’s’ going to jump around a bit.

The biggest achievement from this past year was the fact that I learned to be more independent and less rigid, especially when traveling. This year saw me take a road trip, traversing lands I have never traveled before. To most this isn’t that big of a deal, but for me it was a huge hurdle to overcome. I have never been one to travel by car. I find it to be uncomfortable, boring, and have never liked it. Add to the experience that I now have to consider health issues and it really makes the process more difficult.

This past fall I bought a new car, in Arizona, which was the excuse for my road trip. I flew to Phoenix, picked up my car and drove back. While the experience wasn’t magical, it was very positive. I was able to see parts of the US I have never seen before. I was able to finally meet a Facebook friend. I tested the limits of my car’s fuel tank - thank god the readout was correct. Almost everyone I met was friendly, no matter the size of the town. I learned that podcasts are a great way to pass the time. I also learned when I get fatigued it doesn’t matter how much caffeine I drink, sleep is the only thing that will make the fatigue go away.

Being that the experience was positive, I will most likely be taking a road trip this coming summer/fall - destination to be determined.

On the dating front and really relationships of any type, I learned that humans continue to disappoint me. My feelings concerning people are this, if I reach out to you two times to do something and both times the response is - Hey I’m busy, let me get back to you - after the second time it is on the other person to get back to me. Any relationship has to be built on mutual respect and communication. If one side is not willing to participate, there is nothing I can do about it and I refuse to be forced to chase someone down and goad them into seeing me.

Of course I understand people are busy. But I also know that I let people know just how difficult it can be for me to do things, because my health can be limiting. So when I reach out, I’m not expecting someone to drop everything, but I am expecting not to be discarded like a piece of junk mail. Now maybe I misread the situation and thought the person really was interested in doing something. If that’s the case, I really need to readjust because this problem plagued me in my failure at dating and I failed in my general, what I thought were friends, relationships.

My response to the continually getting crapped on by others, I’ve become even more independent and don’t have a problem with going out by myself. The other is to stop reaching out to others. I can only get burned so many times and to be honest I’m sick and tired of getting burned. Also, I don’t have the energy to chase people around. You either want to do something with me or you don’t. No one can make someone else do something they don’t want to do - at least I won’t force someone into that situation. I’ve learned a good book can be read no matter where I am.

So what am I looking forward for this new year? Well, I am planning to spend a lot of time in Chicago this summer. I became a season ticket holder for the Cubs. I’m very excited to spend time in my favorite big city, watching baseball, and just exploring the city. Finding a place to rent will be my top priority after the first of the year.

I really need to decide where I am going to live. The past two years have further cemented that North Dakota is not the place for me, especially if my goal is to be happy. Sure, I enjoy that Bismarck is quiet, I’m close to medical facilities, and that there are becoming more things to do. While those are positives, Bismarck and North Dakota are too conservative and the views here are stuck in the 1950s. Sorry, not sorry - but this state is too racist and close minded for me. I will need to take some trips to different parts of the US to find out more about the people and what is available to me.

I want to take a train trip out west and loop back around the southwest US and back up to North Dakota. I’ve only been on one train ride, while in Spain. I’ve always heard about how beautiful the ride is to the west coast and down the coast. I didn’t do it this past year because of all the fires. Let’s hope the fires stay away this next year.

My greatest wish is that my health improves, but that’s not going to happen, but one can wish…

I look forward to more time spent with my trusty pups, chasing squirrels and barking at the sneaky yard ninjas. They are the best buddies anyone could wish for and without them I would be lost, even though they both can be naughty AF.

I’m hoping to find something that truly inspires me - whatever it might be.

Lastly, it sure would be nice to meet someone. I’ve set the bar so low that I am not really looking for “the one”. I’m looking for someone who doesn’t smoke, can carry on a conversation, is self confident enough to actually initiate conversation and doesn’t need me for her to enjoy life (that’s not as easy as you would think), believes in progressive ideas, and is willing to travel (travel means to other countries and not just to the Twin Cities). My life won’t be ruined if I am unable to find someone. I just think it would be more fun to do something with someone. Since I have many health issues, I’m quite confident my life expectancy will be 30 years or less. I mean, that’s potential for a whole other life after I kick the bucket - if you ask me that’s quite positive.

[jstew34]

Not the best update

I’m writing this because it’s time for me to get some things out, which is my way of coping.  See I like to keep things to myself, one because I don’t really have anyone I can tell, and two I don’t really trust telling someone.  Let’s be honest, most people don’t want to hear what a person really thinks or feels. So this might help you to better understand me or not.  Really, I don’t care as this is about me trying to get control again.

The past year has been hard. During that time I almost died from an undiagnosed condition, spent months being sick, and had an ongoing feud with the ex.  Add to that, unresolved Veteran Affairs problems and all of this makes me wonder if things will ever get better.

I fully understand that I can be a trying person.  I know that I don’t open up to others.  I know that my illness makes it difficult for others – it can make them feel uncomfortable, or they don’t want to have to make concessions concerning what I can or can’t do and so people stop asking me to participate.  But here’s the thing – from my perspective I am the one who is always asking and because there is no reciprocation, I get pissy.  Should I always be expected to ask the other person to do something?  Isn’t friendship supposed to be a two way thing?  So to protect myself from being constantly let down, I withdraw.

I guess I don’t understand how to get across to people.  I feel I am very upfront and honest about what’s happening in my life.  It has taken me a long time to feel comfortable enough to do this, but I really thought it would help me to better connect with others – in fact it’s been exactly the opposite.  For me to open up is huge and when the response is less than what I expect, it’s a big kick to the sack.  At this point, I don’t know what I can do to make the outcome different, so I have stopped trying.  My goal now is to do what I want, when I want, and I do those things by and large by myself. The silver lining in this is that I am completely comfortable going out alone.  It’s way easier getting a seat at a restaurant when alone – so there’s that.

I’ve found that even the prospect of dating, not a relationship, but dating is no longer a thing. So I thought I would try online dating. Since I don’t go to bars or am involved in a church it’s really hard to meet others.  After being online for longer than a year I have had 2 dates. The first was the other person telling me I needed to change my diet and take supplements then I would be cured. The second was friendly but she and I had different ideas about things.  The rest of the time online has been a series of rejections, usually after we have agreed to an initial date.  I have heard some pretty amazing excuses for breaking a date – the best – I played with my friend’s puppy too long.  I keep my online dating profile active just so I can be reminded how awful humans can be to one another.

Even with all of the bad that has happened, I still try to be an active member of society.  I make time and will myself to go to events that are important.  I lobby and petition our elected officials to try to make sure our rights and livelihoods aren’t further destroyed.  I volunteer and assist with projects, always wishing I could do more, but knowing that just getting out of the house is an accomplishment.

Well, I shared.  It probably doesn’t seem like much but it really isn’t about you.  This was an opportunity for me to get some stuff out and to put it behind me.  Now that I’ve done it, I can move forward – or more realistically two steps forward, three steps back.

[jstew34]

Online Dating

I entered the world of online dating with a lot of assumptions and naivety.  I assumed the opposite sex would be at the same place emotionally and mentally as I am.  I didn’t start online dating thinking I would find the “one”.  My goal was simple, to meet some interesting people and hopefully make some friends, if things progressed from there – bonus.

Every online dating site uses their algorithm to determine who the site thinks would be my best match.  With a bit of searching I was able to find some of the factors the different sites use to help winnow down the selection.  I was able to further identify items which are important to me – smoker, distance, likes pets, religious beliefs, political affiliation - the criteria can be exhausting.

After entering in the applicable criteria the algorithm goes to work and the result is a listing of people most likely deemed a good match.  This is where things get interesting. I will be honest and say based upon my criteria, my match listing was already quite small.  Being a full on progressive in a state with conservative people makes things a bit tricky.  Adding to the problem is my age.  It seems as though everyone must die off after reaching 38 or people lie about their age.  The final big strike is that I don’t believe in a higher power nor do I support organized religion.  I do support a person’s right to believe and practice any and all faiths, but you don’t get to explain things when entering in search criteria.

So my group of faces, that is what I refer to the online profiles as, because that is what you see first, was small.  But I wasn’t satisfied with the algorithm output.  I added some additional things, because I’m nutty like that.  They are as follows:

Big Sunglasses -  If your face is covered by huge sunglasses then I deleted you.  Let’s be honest, online dating is like the real world, if there is no attraction then there won’t be interaction.  So if you hide your face behind two large plastic dark eyes, then I choose to move on.

Duck Lips -   When did this phenomenon start and why is it still a thing?  I have yet to see one person use duck lips to make their picture look better.  Instead it reminds me of a cartoon character.  Sure, that one model in that one fashion mag looks amazing and she is using pouty lips – but those are pouty lips not duck lips.  Just stop already, a nice smile is way more inviting.

The group photo -   Ladies, I do understand that if we were to date I would need to meet your friends.  But in the online dating world if your profile pic is a group of women, how the hell am I supposed to know which one is you?  I get it, you and your friends were all dressed up during Sheila’s wedding and decided to take a pic together.  But I don’t know Sheila, nor do I know your friends.  And to be brutally honest what if I think every person in the photo is breathtakingly beautiful, except for one.  Am I now the asshole, because I took a chance and emailed you and you were the one in the photo I didn’t find attractive?  I know you pee together when in large groups, but online dating should have a rule – one person per photo.

Using your kid to troll -   Some women think it is ok to use a picture of their daughter as their profile pic.  This is so many levels of wrong.  Because I don’t want to go to jail for pedophilia, I refuse to open a profile featuring someone that obviously looks like she is in her teens.  For these women, I hope they stay single the rest of their lives.  What you are doing is gross and by putting that seductive pic of your daughter online, you are telling men it’s OK to put your daughter in their mental spank bank.

Fake eyebrows -   Again, maybe the fake eyebrow is the new thing and I need to change my mind.  But consider this, as a kid I mowed people’s lawns to have spending money.  One customer was an older lady who obviously was decades before her time.  She always had the most interesting colored eyebrows – bright green, stripper blue, smoker orange and since it was summer those same eyebrows would run while she inspected my handy work.  Imagine the shock in my teenage brain the first time she wiped her brow and her left eyebrow went AWOL.  That moment is permanently stuck and I refuse to date someone who lives in fear of a passing rain shower.

Let’s recap – an online dating site uses an algorithm, I add my own criteria and this produces an output of faces (possible matches).  I take those faces and remove the ones for reasons outlined above.  The final result is eight people within 150 miles of my home of record.  Yes, eight people.  So I start the process of emailing faces.  

How in the hell do you email someone without knowing a damn thing about that person?  It really is harder than it sounds, or at least it is for me.  What I found out really quickly was either I didn’t ask to meet in person soon enough or I asked to meet too soon.   I guess timing is not my thing.  Another issue was the inability of the person on the other end to have a conversation.  Since a conversation requires two people the person on the receiving end should be able to do more than grunt.  Ok, it’s not a literal grunt, but the effect is the same.  Another outcome is the abrupt ending.  Emails were flowing back and forth and things seemed to be going well and all of a sudden, nothing.  Should I be worried this person died in some tragic accident and I am the only one that knows because she stopped responding to my emails?  Don’t you worry, after a bit of looking I see she has a new profile but now refuses to respond.

My outcome after six months of online dating, I had one date but she was only interested in my chronic illness.  I had another date, it went well, and I hope we can be friends but I don’t know if we are looking for the same things, which I am fine with.  She was honest, could carry on a conversation, but I think we are at different places in our lives.  That has been it.

I had high expectations when I started online dating.  I had hoped it would be a place I could meet other adults who, like me, had a bit of baggage but learned from it.  I was hopeful I would find others who would want to share some evenings out, maybe seeing a movie.  What I have found is a world as dysfunctional as what I remember from adolescence.  The big difference is I refuse to play the games.  I don’t have the energy or the patience.  You either want to do something with another adult or you don’t.  Either way, I will go still do what I want to do, if someone wants to join me, I welcome the company.

[jstew34]

Brain Dead

I haven’t written anything for a while, not because I didn’t want to, but because I was incapable of doing so.  For the past few months, my brain hasn’t been working.  Yes, go ahead and get the snickering out of the way.  I’m sure a couple of you would argue that my brain has always been a mess. Let’s just say that I’ve been a very dull boy as of late.

The brain fog started about a year ago. I have had memory issues for the past five years, but this is something worse.  I am too the point where I struggle to remember what I ate for breakfast, two hours after.  Having conversations are difficult, I forget words mid-sentence and/or I will forget what it is I was talking about.  If required to remember any detail of significance, I keep a reminder in my phone.  Needless to say, but I have so many reminders I am in need of a Table of Contents to keep them all straight.

Not being able to think or remember is embarrassing.  As I type this I find I struggle to find the correct words to type.  It’s hard to focus and I stare at the screen, waiting for a flicker of electricity to kick the brain into gear.  My head is carrying around grey matter, but the grey matter has checked out.  It’s like having a forever blank wall or like that time you had anesthesia and came to, you are functional, but your brain is numb.

I’ve talked to multiple doctors about this.  All of them give me this strange look and say; “Well you are too young to be having memory issues”.  Okay, but I’m having them.  And doc, why would I say anything unless it wasn’t happening? 

There is one big reason why I might not be able to remember anything, lack of sleep.  I haven’t slept well in over a year.  There are a few reasons why I can’t sleep a full night, with the number one reason being pain.  The next is spasms.  The final reason is stress.  Add all of it together and it might explain why I have a gelatinous blob between my ears.

Most nights I sleep about three hours, wake up in pain, get up, go upstairs, and sleep the rest of the night with the dogs in the recliner.  Pain and/or spasticity are the culprits those nights.  My dogs are great at soothing me and allowing me to fall back to sleep.  When this happens night after night, the body is starved for sleep, which in turn causes a whole slew of issues, one of which is brain drain.  Eventually I get so exhausted I will go weeks where I sleep 12-16 hours/day.  But the funny thing is that all of the sleep doesn’t refresh me.  I’m still a tired, walking zombie.

You are probably thinking; why not just take a nap during the day?  I don’t nap because I’m worried it’s going to mess up my sleep later that night and when I nap I usually have sleep paralysis.  Sleep paralysis is this wickedly evil phenomenon when your body is trapped inside of its self.  I become self-aware that I’m sleeping, I can’t breathe, and I start screaming to wake myself up.  When I finally awake, I’m more exhausted then before I fell asleep.  It’s absolutely terrifying!

I took part in a sleep study a few nights ago.  The goal was to try to pinpoint exactly what was causing my sleep issues and will hopefully lead the doctors to be able to help me.  Here’s a picture:

With all of the wires attached to me, I felt for sure the sleep tech was prepping me to become a humanoid.  The full complement of wires took an hour to attach.  Once completed, the tech says; “OK time for bed”, like the thought of sleep will come easy.  “I’m attached to the friggin’ Matrix”.  To add to the creepiness of the wires the tech would be watching me sleep.  I have no clue how sexy I am while sleeping and do I really want to share my subconscious secrets?  My finger in my nose while my other hand is scratching my junk, yes a totally sexy picture.

Luckily, the study only requires a person to fall asleep for about two hours. 

I sure hope the results will help the doctors to be able to help me.  I really hate this Brain Dead feeling.

[jstew34]

Square Knowledge

I get to spend a lot of time in doctor waiting rooms.  This isn’t by choice mind you, but a matter of fact.  While there I have the pleasure of meeting all types of people; the little old lady who is super friendly, even though she has cancer, the soccer mom who sees the doctor appointment as an absolute time killer, the teenager who is bored with everything, the gentleman who’s pissed that he’s sick.  I meet them all, gay, straight, Republican, Democrat, Christian, Agnostic.  As different as we might be, we all have one thing in common, we are sick.

Being that this is the political season, I have been using my conversations to gain some very critical data.  I never realized the difficulty in trying to get personal data from someone face to face.  While most people will complete the most mundane poll online, that same person will hesitate when asked by human interface.  I can now fully appreciate the hard work Nate Silver and his team at FiveThirtyEight.com do concerning the political landscape.  I find that I can’t just ask the pertinent questions.  Instead, I need to first grease the axle, break down the barriers, and build a level of trust before asking the hard hitting questions.

Since my tactics are my own I won’t be able to share them here.  I will also refrain from boring you with the specific questions.  Once you understand the subject matter you will be happy I didn’t share the questions.  My very unscientific data does allow me to understand and learn valuable information, even if the interviewee finds the questions to be asinine.  There is method to my madness and my madness lets me know a lot about people. 

Every human needs to poop.  Waste removal is an act none of us are proud of, unless of course you’re a dude hanging with your buddies; then the conversation of bowel movements can be quite adventurous.  But given the fact that all of us have to visit the porcelain throne, I can make some observations based on the fundamentals regarding the wiping method you employ.  Yes, I know the thought might make you a bit queasy, but rest assured this is something all of us do.  There really is no reason to be ashamed.

I find that there are three categories of wipers.  The first is the wrapper.  The wrapper will wrap the toilet paper around his/her hand to reach the desired amount of tissue, then removes from his/her hand to use. The second is the wadder.  The wadder will wad up the toilet paper as it comes off the roll, until the desired amount is achieved.  The third is the folder.  The folder unfurls the toilet paper and when reaching the proper amount will take the toilet paper and fold it into the desired size before use.  There are variations on these techniques, but for the sake of this post, these generalizations will do.

The wrapper tends to be Republican.  He/she enjoys a world that is very mundane, stable, and has an order to it.  A wrapper assumes that the doctor has their best interest at heart.  As such, a wrapper will believe everything told to him/her by the doctor and does not take an active role in his/her medical care.  Wrappers also apply this trust to government officials and big business.  Most wrappers surveyed drive large SUVs and have a family size of greater than four.  Wrappers accounted for forty-five percent (45%) of the survey.

The wadder aligns with a Democrat.  He/she wants a world that allows everyone to thrive, not just special interest groups.  Wadders will question the doctor and will demand the best care possible.  They take a very active role in their medical care.  This questioning is evidenced in their overall mistrust of government officials and big business.  The vast majority of wadders drive small, economical vehicles.  Families are small with the average size being less than four.  Wadders accounted for forty-five percent (45%) of those surveyed.

The last and most interesting group is the folder.  A folder is complete chaos.  Folders don’t align with any political organization.  Folders hate going to the doctor.  They assume the doctor is out to get them and will screw them over.  A folder won’t follow a doctor’s instruction and don’t finish their antibiotics.  A folder believes in complete autonomy.  I believe this group to be of an undecided mindset, therefore, classified as Independent.  Folders tend to be a lone wolf.  If married, the family size has a very wide range making the statistic useless for this survey.  The folder group comprised ten percent (10%) of people surveyed.

When time permits I will break down the data further.  As stated above there are variations on the three basic techniques.  Some of these variations are:

Spinner – Spins the roll letting paper pile in the hand

Hand over hand – As name implies, hand over hand is used to unroll paper

TugTug – This group grabs the end of the roll and gives gentle tugs to release the desired amount

Cat bat – Like hand over hand but uses a batting motion like can be seen in thousands of cat videos

Karate Chopper – Spins and chops tissue

Mummy – Like the Wrapper, but wraps hand completely, wipes and releases

Manual – This type doesn’t use the toilet roll holder

I hope you will stay tuned for more breakdown of this intriguing data.  As election time draws near, I firmly believe this data will prove invaluable to all the candidates.  Maybe I too will become famous for my projections.  I think my polling company will be named Square Knowledge.

Let’s be honest, this might be valuable information but people are too squeamish to want to know about the bathroom habits of others.   This idea is much like this post, full of crap.

[jstew34]

Learning to Fly

We all have memories from high school.  As the years go by the memories and the stories that accompany them morph into a hodge-podge of fact and fiction.  Below is such a story. 

Tomorrow was the day, the day the class of 1990 was finally going to graduate.  I remember looking forward to the day with great earnest.  I so wanted out of the small rural community in which I resided.  For me graduation was the day I could finally get away and could see the rest of world.  No longer would I be under the thumb of my parents, forced into the slave labor of farm life.

I had already joined the Army National Guard.  A week after graduation I would be boarding a plane to the all too real Fort Leonard Wood, Missouri.  The stories I had heard from friends that had attended boot camp gave it mythical quality.  Every time we talked about it, I was anxious, excited, and determined.  I was told to be prepared for long, hot days; with many sleepless nights.  The drill sergeants were mean and would screw with a new recruit whenever possible.  Food was a privilege, not a right.  So when I had access to it, I was to shovel it in and worry about tasting it later.  The greatest warning was given to the bugs, especially the spiders.  The brown recluse was to be feared.  Even though I had never seen one, I was to avoid it at all costs.  I was told that some dude lost his arm to one as it had laid eggs under his skin.  Google had yet to be invented, without it, there was no way I could fact check this tale?

To get to graduation I needed to survive this night.  Tonight the class was having a baccalaureate and a party afterwards.  The baccalaureate was nothing more than a glorified supper with a sermon from one of the local vicars.  The meal consisted of rubber chicken, instant potatoes, wilted lettuce, and for dessert cherry bars.  Crepe paper table cloths covered the graffiti, gouges and gum of the sway back tables.  Plastic stemware would contain the clearest, most sparking tap water.  School officials took this event seriously, which meant we were to do the same.  But, we knew that within twenty four hours they no longer had power over us.  Their magic was weak and the evening was a compromise of power.  Both sides hoped for a short sermon.

As the sermon droned on, the only thing the group of us could talk about was the party later.  Did we have enough beer?  How many people were going to be there?  Did everyone remember how to get there?  For us, the party was the important event of the night.  It was going to be our last big blowout; the final epic event for the class of 1990.  Finally, the speech meant to inspire us, ground to a halt.  Before being released to the booze that awaited us, we were given one final warning.  We all were told that if any of us were picked up for ANY type of illegal activity, it would jeopardize our graduation.  Laughing at the notion of being caught, we hopped into the cars and sped off.

Had we grown up in a large community I doubt if our graduating group of young men would have been in same social circle.  It was crazy that the jocks, nerds, band geeks, and the socially awkward could all breathe the same air and in turn be at the same parties.  But this group had one common thread; we all wanted to get away.  We were getting away, or at least that's what we told each other.  We couldn’t stand the life of the small town.  It was too boring, stifling, and allowed no privacy.  All of us were determined to spread our wings, to see and do things we could never do locally.  None of us had aspirations of serving a higher purpose, like so many youth do now.  We only wanted to have fun, as long as it wasn't here.  

The future plans were as varied as the social labels affixed to us.  Two guys were heading to LA to form a rock band.  We secretly thought that only one of them had a chance, the other couldn’t imagine a life without the first.  One was headed to become an airline pilot.  We thought this was cool, but wondered if he had the money necessary to complete the training.  Several were heading to different State colleges to learn a trade.  All of us agreed that these jobs wouldn’t be sexy, but they would provide the skills necessary to have a successful life.  Several were like me, heading to the military.  The remaining was determined to get the hell out of town, do some drugs, find a woman, and do whatever the hell they wanted.  Secretly I envied the last group the most.  They absolutely refused to be encumbered by anyone else’s expectations.  They truly wanted to live fast and die young. 

We stood there drinking and bragging of all the sneaky shit we had done growing up.  All of us were laughing at the absurdity of the stories.  Like the time the cops showed up to a huge bonfire we were having.  One of the guys got so scared he ran through a barbed-wire fence and continued running the five miles back to town.  As we were telling the stories of the past, we didn’t realize we soon were going to be part of a story that lingers to this day.  Our party took place in a farm Quonset.  A Quonset is a steel building that houses farm implements.  This one had a dirt floor and a super-sized automatic garage door, which rose twelve feet in the air.  This type of building is common all over rural America.  What isn’t common is what happened that night.

As the beer flowed and music blared we became more convinced of our invincibility. It was getting warm and dusty so someone decided to open the Quonset door.  As the door slowly ascended, someone grabbed the bottom of the door and held on.  We all stood there in awe, as he slowly rose.  When his feet got about four feet off the ground, he let go, landed clumsily, and started laughing hysterically at what he had just done.  We lifted our beers in honor of his achievement.  Immediately everyone started bragging how they were going to go higher. I am deathly afraid of heights, so I used the best deflection techniques possible to avoid taking a turn.  The next person to go grabbed hold and was lifted, the whole party cheering.  He went up about two feet, let go and landed on his feet.  He was booed, chants of “You’re a pussy”, could be heard.  The next riders went up in a pair.  Not wanting to be called “pussies” they set a new record of six feet.  Upon landing they stumbled, and fell into each other but hopped back up, dusted themselves off and continued drinking.

The last group to ride the cold gray beast was a threesome.  The door creaked up, taking with it the load of the drunk, laughing classmates.  Chants of higher, higher, higher were screamed.  The first rider let go at the four foot mark, he was booed.  The next rider let go at the six foot mark.  The last rider feeling cocky and his decision greatly affected by the amount of booze he had consumed, had decided to ride while holding his beer.  With one hand clinging to the garage door he ascended into the night sky.  The party was cheering wildly as he made the nine foot mark.  He was screaming “You’re all pussies; I’m the best; FUCK YOU, FUCK YOU”.  He started kicking his legs as the ten foot mark approached.   

A muted thud was heard as his face hit the dirt first.  A small cloud of dust rose. Beer shot in one direction while blood splattered in the other.  The wild cheering stopped and was replaced with a synchronized gasp.  The rider made no noise nor did he move.  He was knocked out cold.  Several of us ran over to him and slowly turned him over.  Looking down we all saw the grotesque mess. Blood and dirt were smeared across his face and his nose was lying flat against his cheek. Screams arose as more people saw the hideous mess.  He slowly regained consciousness.

Holy shit, what were we going to do?  We discussed the different options.  He needed to go a hospital but we were worried about getting in trouble.  We figured his nose was broken. Maybe, we could push it back into place.  Someone suggested that he had a concussion, or possibly a skull fracture?  We asked him what he wanted.  His garbled response was to get him another beer.  Finally, someone said “This is bullshit, he needs to go to the emergency room, I’ll take’m".  "Help me get him loaded, but don’t get blood on my new jeans”.  Makeshift towels and a pillow were made from jean jackets and long sleeved shirts.  We did our best to get him loaded into the car.  Two classmates drove him to the emergency room.

The party was very subdued after this.  We talked about what we thought might happen.  Were the cops going to be called?  Were his parents going to be pissed about having to get him from the ER?  Was he going to need surgery for his nose?  No one had cell phones back then, so we had no idea what was happening to our friends.  This talk continued long into the night.

The next day, at the graduation ceremony, I found out what had happened at the hospital.  It seemed that parents don’t like being called in the middle of the night to get their son from the ER.  In fact, his parents were so pissed they wouldn’t let the doctors set his broken nose.  They screamed at their son for being nothing but trouble and said they were happy he was graduating, as they were kicking him out of the house.  They screamed at the two guys that drove him to the hospital.  Basically, they just screamed at everyone and everything.  They refused to pay the bill, telling the hospital to put it in their son’s name.  As all of this was being told to me, I remember thinking; no way his parents were that big of assholes.  Surely they let the doctors set his nose, I mean think of the damage they were causing. 

He walked in, sunglasses on, trying to conceal the damage.  He was grinning, but as I think about it now, it was actually more of a grimace.  He took the sunglasses off to reveal two swollen, black eyes.  The tip of his nose was almost touching his cheek.  The bridge of the nose was an S shape.  He had cuts and scrapes all over his forehead.  He confirmed the story I heard minutes earlier.  His only reply when asked what he was going to do; “I’m leaving for Denver tonight”.  His parents told him to have his nose fixed when he’s sober, so it would hurt more.

I haven’t seen many of my classmates since graduation. But as I look at my class graduation picture the evidence of that night exists.  He has two black eyes, a misshapen nose, cuts and bruises on his face.  He is smiling like the rest of us, knowing that he will finally be free.  I wonder what happened to him and my classmates.  I hope all of them have had the life they wanted.  More importantly, I really hope he got his nose fixed. 

[jstew34]

I was a soldier

I awoke this morning with the realization that I am no longer a soldier.  A twenty four year career, in the Army National Guard, was terminated by a medical condition.  As I lay in bed I remembered my career. 

The first memory of my Army experience was that of a large silver converted livestock trailer, affectionately called a “cattle car”.  Fifty young men were over-stuffed in the trailer.  Our heads cleanly shaved, you could smell the fear, excitement, and the testosterone.  Fifty young men, from all corners of the United States, were waiting for the dreaded moment of meeting our drill sergeants. We all stood there, no actually wedged, clutching for dear life the duffel bags of military gear.  As the livestock trailer eased to a stop a twenty something drill sergeant slowly stood, affixed his round, brown hat and screamed; “GET THE FUCK OFF MY TRUCK!”, Basic Training had begun.

The military offered many firsts for me on that day.  It was the first time I talked with an African American, a Puerto Rican, and a Mexican.  It was also the first time I ever feared for my life, thank you drill sergeant Hansel, you prick.  I met a guy from New York who was the best hustler I have ever met.  I met an Alabaman who joined the military because his other option was jail.  I regrettably met a dude from West Virginia; it was regrettable because his nickname was Wolf Pussy.  He got this nickname because in eighteen years of life he had never brushed his teeth. After ten weeks hard work, a lot of sweat, and a few tears, I too became a soldier.

My first full time job was working for the Army National Guard.  That job, like the ones that followed, was a job behind the scenes.  All were important jobs, but if done correctly, no one ever would have known I was there.  I was a processor of travel pay, a parts specialist in a military motor pool, a computer specialist for the logistics branch, and finally I worked as an IT administrator for the North Dakota National Guard.  All of these jobs challenged me to be precise, to find mistakes, and determine how to correct them.

I am most proud of my work as an IT administrator.  I was part of a group that helped to usher a technology revolution.  This revolution changed how the National Guard conducts business by allowing it to communicate directly with all levels of leadership.  Gone were the days of typewriters, pen and ink changes, and completing forms in triplicate.  Signing a document is no longer completed with a pen, but instead with a digital signature.  Passwords are obsolete, replaced by a pin and a card.  While the pen is mightier than the sword, the computer is a nuclear warhead.

During my time I witnessed many changes in social thought.  Consuming alcohol, while in uniform, is now considered taboo instead of the status quo.  Don’t ask, Don’t tell policy is gone and in its place a policy of it’s not the Army’s business who you love.  Women are allowed to serve in combat roles.  Basic training is no longer gender based.

I am very happy that I was able to have this career.  I was afforded many opportunities and I feel that I utilized them to improve myself, which helped improve the National Guard.  It feels strange to know that I will never again be called to attention, be required to wear my uniform, or need to keep my hair cut short. During the next emergency my knowledge and expertise won’t be required.

I am no longer a solider.  Instead, I AM a veteran, who WAS a soldier.

[jstew34]

At least it's not cancer...

I ran into an old acquaintance recently.  It was a strange experience and has left me feeling confused.

The conversation began with the pleasantries that one would imagine, “How are you?  What have you been up to?  I haven’t seen you in years.”  I explained that I was really sick but that I was feeling a bit better after treatment.  I was pressed further, “What is wrong?  What kind of treatment did you have?”  I decided at this point to let my guard down.  I calmly explained my illness, what it is, how I started treatment, and that I had went to Moscow to reset my immune system.  The listener was engaging and asked a lot of questions.  But the end of the conversation ended with this “Well you look good and at least it’s not cancer.”

I stood there frozen, not knowing how to respond to that statement.  It’s really been bothering me. 

Let me break down the first part: Well you look good

I’m NOT sorry that my outward appearance doesn’t make you feel uncomfortable, but yet is satisfactory enough to elicit the off handed compliment.  Yeah I look “normal”, but if I looked like I felt I would cause mass hysteria.  When I am in public, which is not often, I make sure of the following:

I’m very well rested.  I have bouts of fatigue so I make sure that I am as peppy as possible before venturing out.

I have taken the needed medications and have my pill bottle with me in case pain and spasticity flare.  This can happen at a moment’s notice.

I make sure I’m groomed and dress well.  Since I don’t go out often I try to look as good as possible.  It makes me feel better and it obviously makes others less uncomfortable.

Well at least it’s not cancer

Yes, I am glad I don’t have cancer, but I do have an illness that will require a LIFETIME of treatment.  I have seen the devastation of cancer firsthand.  I hope that someday I will be in remission of my illness, but there is no guarantee.  Also, any damage that was already done is likely permanent.

What bugs me most about the whole conversation is that IF I did have cancer, I might have received empathy from this person.  I don’t want sympathy.  I would like a casserole, or a call/text from friends that distanced themselves, after I became “no fun”.  You see cancer patients don’t need to justify anything to anyone.  The world understands that cancer can kill and treatments can be arduous.  Cancer patients have support groups to help them through the difficulties that can include physical as well as mental health problems. 

Having a rare disease means that every time I see a new doctor I have to re-tell my story.  I then need to hope that they either understand the illness and/or believe me.  A cancer patient doesn’t have to do this.

If someone takes the time to share their medical history, don’t be dismissive.  It takes a lot of nerve to open up about something that is life altering.  Don’t pass judgement about an illness based on looks and whether or not it’s cancer. 

So what should you say? :  I’m sorry you have had to experience this, is there anything I can do to help? 

That’s all I want to hear.  It really is that easy.

[jstew34]

Roll on

During a spell of recent nasty weather, I sat on the couch in agony.  My legs were on fire.  The muscles felt like they were shredding and I thought the bones were going to explode.  I had tried all of the remedies that had worked in the past.  Heat, stretching, pain medication, lidocaine cream; none of them were up to the task at hand.  I started digging my fingers into my muscles trying to get trigger point relief.  But, I found that I couldn’t dig deep enough.  I grabbed the remote control and started getting “stabby” with a grinding motion, which too was to no avail.

 I resigned myself to a very unpleasant evening.  I know, from many years of experience, these feelings will not subside quickly.  It was going to be a sleepless night, filled with crappy TV.  Maybe if I was lucky I could watch the new dance craze workout infomercial.  I quickly hid my credit card so I wouldn’t be tempted to buy it.

Suddenly I had an epiphany; I had a tool at my disposal that could allow me to get the proper pressure needed to work the muscles.  I pushed myself off the couch and hobbled to the kitchen.  I slowly opened the drawer and spied the item that I was positive would bring me relief.  A wooden rolling pin with handles shone like the sun.  I gently cradled my intended savior and went back to the couch.

Both dogs awoke from their naps to witness this mad experiment.  I could tell that they both thought I was absolutely insane.  I told them to mind their own business, but instead they sat staring at me.  Two sets of eyes were scrutinizing me, waiting for me to go “baker boy” on myself.

I stretched out my right leg and pushed the rolling pin as hard as possible into my thigh.  It hurt like hell.  The dogs started snickering, this pissed me off.  I gritted my teeth and starting rolling my thigh.  I could feel the muscles rolling underneath the pin.  The grizzled meat was unyielding at first, but then slowly the tissue started to relax.  The pain slowly subsided and was replaced by a warm pleasant feeling.  After five minutes of rolling, I switched to the left leg.

After rolling out my thighs, I placed the rolling pin on the floor.  I placed my legs on the pin and did a butt scoot to move the pin back and forth.  The dogs started racing around me, both were yapping that I needed to have my anal glands expressed.  I told them to shut their yappers. 

A total of twenty minutes was spent rolling my leg muscles.  The pain was gone.  I was relieved and mad at the same time.  Why didn’t I think of this simple trick before?  Triumphantly I placed the rolling pin back in its home.  The dogs conceded that my plan was indeed brilliant. 

All of us went back to the couch and curled up, pain free and happy.

[jstew34]

Stem cell Birthday - A long road

One year ago, I lay in a Moscow hospital. I had a three pronged catheter, protruding from the right side of my neck.  Attached to me were different bottles of drugs, which were intended to make the upcoming process easier.  All of the preparations were complete.  Days of chemotherapy treatments, IV steroids, injections to stimulate stem cell growth, and my stem cells collected.  All of this was done to prepare me for this moment.  I was getting my stem cells back.  The last thought I had before they were injected back into me was “I really hope I made the right decision about HSCT”.

Reflecting on these past twelve months, I still wonder if I made the right decision.  Maybe, the “right” decision places too much emphasis on the moment.

I entered the Moscow hospital a vibrant, albeit, very sick man.  Can one be vibrant and sick?  The answer is yes.  To see me, you wouldn’t notice that I was suffering from an autoimmune illness, CIDP, which had robbed me of my previous three years.  You would really need to look close and listen extra carefully to me, otherwise you would miss the clues.  My gait had a slight limp.  I was constantly stretching and/or rubbing an appendage.  If asked how I was doing, you would receive a non-descript, “Fine”.  I was tired, in pain, and just beat down.  It was time for a change.  When I left Moscow I was forever changed.

I arrived back home a grotesque version of the person that had left thirty five days earlier.  I was bald, very pale, weak, fifteen pounds lighter, and I could barely navigate the steps in our house.  Pain was unbearable.  My wife referred to me as the fictional character Boo Radley.  My dogs didn’t recognize me. 

Initially my recovery was hampered by upper respiratory infections and a local doctor that didn’t want to participate in the healing process.  Weakness, pain, and spasticity were constant companions.  I spent countless days either in bed or on the couch.  Eventually, I found a new doctor that is still treating me.  Her care is what has helped me get “better”.

I sit here a bit disappointed that I am not further recovered.  I still require bi-weekly IVIG infusions, just like I had prior to the procedure, although I require less of it.  My body is about eighty percent recovered.  My immune system is still trying to get its act together.  I have experienced small improvements, but I’m not sure if they are actual improvements or if they represent healing from the chemotherapy damage.

I have been researching long term effects of HSCT for patients with CIDP.  My research has led me to a few small studies and anecdotal information from other patients.  All indicators point to at least twenty percent of CIDP patients will either not respond to HSCT and/or will require continued immunotherapy after HSCT.  Do I fall into this twenty percent?  Since it takes twenty four months for the body to fully recover, I need to be patient. 

So what did I learn from this experience?

Self-doubt is inevitable.  Keeping a positive attitude is hard and can be made harder by non-caring healthcare professionals.  My wife has kept me grounded and without her I never would have made it this past year.

New friendships can be forged when lying in a foreign hospital.  I met some wonderful people while in Russia.  We were all receiving the same treatment, even though we had different illnesses.  Those friendships will always remain special.

Don’t compare your recovery to what others have experienced; use it as a guide only.  We all recover at different rates.  My experiences are vastly different than others.  At first I was very envious, but now I realize that any recovery should be celebrated.

Find doctors that are willing to participate in getting you better.  It doesn’t matter how much evidence you show a doctor, if he/she is unwilling to change their mind, find a new doctor.

You are your best advocate.  You know your body the best and therefore don’t let anyone else tell you how you should feel.  If that person walked a mile in your shoes they would hand them back and run away as fast as possible.

The greatest lesson I learned, don’t take life too seriously.  Life is meant to be enjoyed, even when hampered by illness.  Do whatever it takes to be able to live it to the fullest.  We only get one shot at life and by choosing not to live it we a miss out on many opportunities.

My future is still uncertain.  I don’t know if I will ever be able to work a full time job.  A year ago I would be stressed out about this, now I know that a job doesn’t define life.  There are many other things that I can do and I plan to do them, as my health allows.  I look forward to vacationing with my wife.  It has been years since we enjoyed a trip that didn’t involve a doctor appointment. 

The big question, would I do it all again?  Honestly, I don’t know.  At the time, my health was declining and my doctors weren’t giving me options for improvement.  Had I found my current oncologist, maybe my path would have been different.  Either way, I’m glad I took the chance at improving my quality of life.  The process has taught me more about myself than anything else I could have experienced.

To anyone contemplating HSCT, I wish you well.  The decision is a difficult one to make.  You will be forever changed after the procedure.  The procedure is hard on your body and your mind.  Be prepared for a long recovery.

[jstew34]

Walk induced passout

[jstew34]

After losing ability to do this, I find this is one of the most beautiful sites in the world. #dogwalk

[jstew34]

Mixed Emotions

Today, April 14th, is a day that brings me immense joy and terrible sorrow.  This one day has changed my life in many ways.  There are things about this day that still cause me to have nightmares.  This day is also a day of great hope and transformation.

On April 14th 2006, my dad passed away.  He had been in a losing fight with stage 4 lung cancer.  For two years he did chemotherapy and radiation in the hopes that he could put it into remission.   Unfortunately, the cancer was too advanced. 

The nightmares started soon after his death.  I don’t know what my family will think of this post, but I can tell you this is the truth, as I remember it.  My dad refused to make a decision concerning life support.  My brother and I implored him to make a living will.  We even got a form ready for him but he refused to fill it out.  So when the time came to make that decision, he looked at me and said “You know what to do”.  Yes, I made the decision to end my dad's life.  Ok, maybe that statement is a bit harsh, but there is more to this story. 

We had to move my dad from a hospital to a care facility once his doctors realized there was nothing more they could do.  The care facility was very understanding of the situation and assured us that they would do everything possible to make sure he was comfortable.  My dad was comfortable, but he was unable to comprehend the situation.  His bones were releasing large amounts of calcium and it was building up in his brain.  He was very confused and agitated.  To help ease his discomfort, he was given morphine. 

The final hours were extremely stressful.  The care facility director was gently, but firmly telling me that too many people were visiting at one time.  She stated that this would prolong the inevitable.  She also warned me that death is messy.  The body will fight to hold on and this fight will be greater if there are people in the room.  I tried telling family members that they needed to leave my dad alone, but my pleas went unheard. 

While all of this was going on, my brother and I needed to meet with life insurance agents, clean out dad’s apartment, and run other errands.  My dad was supposed to take care of these things and didn’t.  Instead of being able to have one last 5 minute conversation with my lucid dad, I was busy playing traffic cop.  As the day wore on, the stress became unbearable. 

Around 7 PM a nurse pulled me aside.  She said that all of my dad’s vital signs were very low.  She thought that he would pass at any moment.  She asked me if it was ok if she gave him some more morphine.  This dose would ease his discomfort, but it would also mean his death.  I said yes. 

I know I made the right decision, but it was a decision I didn’t have to make.  That decision still haunts me.  If you are a parent, please do your children a huge favor and make the necessary preparations for the inevitable. 

   April 14th 2014 was a day filled with promise and hope.  That is the day I arrived in Moscow to begin testing for HSCT.  The goal was to hopefully halt my CIDP.  Dr. Fedorenko met me with a warm handshake and the promise that he could help me.  It was the first time, since my diagnosis, that I felt hopeful.  Maybe this treatment would finally stop my body from degrading.  Maybe I could once again live a “normal” life.  No matter the outcome, I knew this was a life changing moment.

My HSCT anniversary is almost here, April 30th.  I will write another blog post then to share my experiences of the past year.  It has been very eventful.