One step forward, two steps back. It sounds like I'm doing country line dancing, right? Well... you're at the wrong rodeo, cowboy.
Recently, my PCP (primary care physician) retired. I spent such a long time finding one too! She told me that she has another doctor that was accepting her patients. The problem is though, he is just a clinic doctor. Meaning he doesn't really have the power to refill my current prescriptions, or refer me to any specialists (yes, I still do not have a neurologist caring for me, which means I am currently still without treatment.)
It made me realize that I cannot get the proper care I need with my current insurance or area that I live in for that matter. The only solution would seem to be to relocate to a different area that offers more opportunities for care.
I recently had a revelation that over my life time I will work many different jobs and live in many different places, but I only have 1 body and that's more important that anything for a 28 year old male with MS that has a cat, a puppy, a wife, and maybe someday a baby.
I'm not really sure how to make the first step, but at least I know where it will take me. To a better life. Right now, I need to try to do my job the best that I can and support my family until my wife graduates from college.
I currently have all the medical coverage in the world, and yet, there are no doctor's that can treat me. It's kinda like owning a sports car, but not having the keys.
Tuesday, November 1, 2011
Wednesday, October 5, 2011
Running on fumes
Feeling depressed lately. Work is getting increasingly stressful. I'm one of those people who have the superhero complex, you know, when people take it upon them selves to make everyone happy and everything fixed. It gets tiresome of being the one who constantly solves a crisis (even though they aren't). I get stressed out easily, more so when I can't solve a simple problem in which, to me, feels like it could be the end of the world if I don't resolve that pending issue. I care too much what people think of me, I feel insufficient if someone is mad at me for being myself.
I do very physical and mentally draining work at my job almost every day. I'm reduced to just a shell once I get home because things eat away at me from the inside out. I feel like I'm constantly monitored inside and outside of the job. People constantly ask me if I'm okay or whats on my mind. I get sick of it. I can't even have my thoughts to myself. From my boss to even perfect strangers.
I'm so exhausted when I get home I don't have the energy to do chores. Just thinking about what I want for dinner is mentally and physically taxing. After driving 100 miles to work sites or driving in heavy traffic downtown, I do not want to drive anymore. Even to go down the road 2 miles for toilet paper. Sometimes at work on my lunch break I just get in my truck and pull around to the back of the building, an escape from the world where I don't have to save the day or share my thoughts. A place I can be alone for an hour and refuel my soul. Tranquility...
I do very physical and mentally draining work at my job almost every day. I'm reduced to just a shell once I get home because things eat away at me from the inside out. I feel like I'm constantly monitored inside and outside of the job. People constantly ask me if I'm okay or whats on my mind. I get sick of it. I can't even have my thoughts to myself. From my boss to even perfect strangers.
I'm so exhausted when I get home I don't have the energy to do chores. Just thinking about what I want for dinner is mentally and physically taxing. After driving 100 miles to work sites or driving in heavy traffic downtown, I do not want to drive anymore. Even to go down the road 2 miles for toilet paper. Sometimes at work on my lunch break I just get in my truck and pull around to the back of the building, an escape from the world where I don't have to save the day or share my thoughts. A place I can be alone for an hour and refuel my soul. Tranquility...
Wednesday, March 23, 2011
Be Thankful
Rich or poor, fortunate or unlucky, healthy or sick we all complain about something. No matter how blessed we are, we forget about how bad things used to be or could be. Sometimes we take things for granted and until something becomes worse we forget or don't realize it.
For example...
Theres a few things that aren't perfect about my current vehicle, like my front speakers are busted in my truck, but I remember the car I had before. It was a very small white Hyundai, my dad bought it for me for a whopping $200. The radio didn't work, and it had no cruise control. It also had a bad transmission leak and just burned through oil like you wouldn't believe. I forget how much better my truck is than that white Hyundai. I am also thankful that I HAVE a vehicle period! I remember the days of my parents driving me around with the windows down and their oldies music blaring as I melted down into the seat in embarrassment.
Living with MS can bring us into a state of mind that nothing works out, but if you count your blessings you'll never be empty handed. One year ago I had no job, was renting an insect infested $250 a month apartment, and lived in a town so small everyone has to go out of town to eat at a nice restaurant or go shopping or have a night out for fun. For some, it is a town of close relatives and friends. For others its a place of unemployment and crime.
I've been working at a job that I have fun doing for the last 2 months. I get outside of my house everyday for hours, not only that but I get paid for it too! They even gave me a vehicle to drive. I also get to work in some of the greatest hotels and restaurants in Memphis. Just the opportunity to work as an MS patient is gratifying and a privilege. I remember when I was in a place where I had no job, budgeting every dollar I got from disability month by month. Sometimes I catch myself complaining about having to wake up so early in the morning to go to work or not getting the closest parking spot at the office, even though there is usually a free one only 20 feet away. I just take for granted sometimes that I didn't always have a job to wake up early for or having to walk a much longer distance while using a cane.
I have always thought I've already accepted this disease, but there are times that I get so mad and frustrated when symptoms pop up as if they should never happen. You would think after 8+ years of being fatigued or not being able to speak seamlessly I would get used to it, but honestly I get tired of it. MS seems to be unrelenting at times, but I've had worst days and seem to forget about that. Heck, there are times I forget I have MS until something goes numb! Maybe that's a cue for me to wear my orange silicone bracelet.
One last thing, a note to self. If you ever get stressed out or distraught about something, reread this post so that you remember how much worse it used to be or can be!
For example...
Theres a few things that aren't perfect about my current vehicle, like my front speakers are busted in my truck, but I remember the car I had before. It was a very small white Hyundai, my dad bought it for me for a whopping $200. The radio didn't work, and it had no cruise control. It also had a bad transmission leak and just burned through oil like you wouldn't believe. I forget how much better my truck is than that white Hyundai. I am also thankful that I HAVE a vehicle period! I remember the days of my parents driving me around with the windows down and their oldies music blaring as I melted down into the seat in embarrassment.
Living with MS can bring us into a state of mind that nothing works out, but if you count your blessings you'll never be empty handed. One year ago I had no job, was renting an insect infested $250 a month apartment, and lived in a town so small everyone has to go out of town to eat at a nice restaurant or go shopping or have a night out for fun. For some, it is a town of close relatives and friends. For others its a place of unemployment and crime.
I've been working at a job that I have fun doing for the last 2 months. I get outside of my house everyday for hours, not only that but I get paid for it too! They even gave me a vehicle to drive. I also get to work in some of the greatest hotels and restaurants in Memphis. Just the opportunity to work as an MS patient is gratifying and a privilege. I remember when I was in a place where I had no job, budgeting every dollar I got from disability month by month. Sometimes I catch myself complaining about having to wake up so early in the morning to go to work or not getting the closest parking spot at the office, even though there is usually a free one only 20 feet away. I just take for granted sometimes that I didn't always have a job to wake up early for or having to walk a much longer distance while using a cane.
I have always thought I've already accepted this disease, but there are times that I get so mad and frustrated when symptoms pop up as if they should never happen. You would think after 8+ years of being fatigued or not being able to speak seamlessly I would get used to it, but honestly I get tired of it. MS seems to be unrelenting at times, but I've had worst days and seem to forget about that. Heck, there are times I forget I have MS until something goes numb! Maybe that's a cue for me to wear my orange silicone bracelet.
One last thing, a note to self. If you ever get stressed out or distraught about something, reread this post so that you remember how much worse it used to be or can be!
Friday, January 21, 2011
**UPDATE**
So, for the first time in 8 years, I have a job! I've been working for a total of 3 days now and I love it. I've been wanting something like this for a long time. People might think the thing I'm happiest about is the fat pay check I'm going to get working here, but thats not it. Sure, this is the first time in a long time I will have financial stability, but the thing I'm the happiest about is liberation. Just experiencing the fact that I am able to work despite my disabilities is wonderful. I am no longer a prisoner of a disease (for the most part) or surrendering my desires for things that were unobtainable until now. To see that I can lift a heavy box or know that naps are no longer mandatory is truly magnificent! I know there will be those days, you know, those difficult days where I'm fatigued or weak, but until those days come I'm not going to worry about it. I've learned that you should never worry too much, if you do then when you fear about something and it doesn't happen, you've caused all that anxiety and worry for nothing. And if it does come, then at least you won't have twice lived that situation. And so what? Its not the end of the world.
Wednesday, January 5, 2011
A leap of faith
I lived in a small town in Arkansas for 26 years until August 2010. Helena, Arkansas was once a thriving community, but factories and plants have closed throughout the years, several business have closed, and a large population of people have moved out. It once had a bowling alley, skating rink, and a movie theater but the economic state of this city had put an end to many businesses. There have always been a shortage of jobs in my home town, and when you have M.S. those jobs go down even more.
At the age of 18 I worked my first job at a computer repair business. I learned everything I know about computers at that job but 6 months later I was diagnosed with M.S. and had to quit. Ever since then I was self employed because there weren't a lot of jobs I could successfully work. I was a natural at fixing computers, it was like the day I was born I was destined to be an IT employee.
Now I live in Northwest Mississippi, literally 2 miles from Memphis City limits. Me and my fiancée moved here because of the endless opportunities this area has available. Not only are there jobs, but there are better restaurants, grocery stores, and entertainment that immensely improves our quality of life. My fiancée has been working at a car dealership before we moved. She drove an hour both ways every weekday in my gas guzzler of a truck for a period of time. Now we live 20 minutes from her job. I've been searching for jobs ever since we moved to Mississippi and haven't had much luck. I only had 1 job interview but did not hear back from them even to this day.
But on this day, January 4th, 2011 I received a phone call from a manager and he requested a job interview with me tomorrow. I have been extremely stressed out and anxious about finding a job for several months, and with a wedding coming up in 7 months the pressure is definitely on. For 6 years I have collected disability, partly because I have M.S. but also with lack of job opportunities when I lived in Arkansas. Just living in a town that is on life support is disabling. This job means so much to me, its a POS technician position that is somewhat like working on computers but I'll be servicing and installing Point of Sales peripherals that may require travel and work on nights and weekends and require lifting 60lbs. You may think to yourself that sounds like very daunting tasks for someone with multiple sclerosis to perform, but its nothing different than what I did as a computer technician. Its basically the same thing, except through a different medium. Its what I love to do. If I get picked for this job I am going to do this job with every fiber of my being and use every shred of experience I've ever had.
Also my fiancée signed up for nursing school today, she is going achieve an associates degree in nursing but is taking extra credits just in case she decides she wants a bachelors degree. From January to May she is going to take online and night classes while working 40 hours at the car dealership. It won't be easy, but telling us that we can't do anything because of M.S. just makes us more determined. Not many things in life go as easily as you want them, but nothing is strong without some kind of resistance. You can't build your biceps curling a paper towel tube, you have to work hard and use some 20lbs dumbbells!
So I am putting my neck on the line, my game face is on, time to stop worrying and just close my eyes and leap. Fate will carry me there. Things always work out for the best. Some of the greatest things that happened in my life was a result to the times I stopped worrying and let things take their course. There is a fortune cookie on my fridge that says "Expect the worst but hope for the best" and I live that every day of my life.
At the age of 18 I worked my first job at a computer repair business. I learned everything I know about computers at that job but 6 months later I was diagnosed with M.S. and had to quit. Ever since then I was self employed because there weren't a lot of jobs I could successfully work. I was a natural at fixing computers, it was like the day I was born I was destined to be an IT employee.
Now I live in Northwest Mississippi, literally 2 miles from Memphis City limits. Me and my fiancée moved here because of the endless opportunities this area has available. Not only are there jobs, but there are better restaurants, grocery stores, and entertainment that immensely improves our quality of life. My fiancée has been working at a car dealership before we moved. She drove an hour both ways every weekday in my gas guzzler of a truck for a period of time. Now we live 20 minutes from her job. I've been searching for jobs ever since we moved to Mississippi and haven't had much luck. I only had 1 job interview but did not hear back from them even to this day.
But on this day, January 4th, 2011 I received a phone call from a manager and he requested a job interview with me tomorrow. I have been extremely stressed out and anxious about finding a job for several months, and with a wedding coming up in 7 months the pressure is definitely on. For 6 years I have collected disability, partly because I have M.S. but also with lack of job opportunities when I lived in Arkansas. Just living in a town that is on life support is disabling. This job means so much to me, its a POS technician position that is somewhat like working on computers but I'll be servicing and installing Point of Sales peripherals that may require travel and work on nights and weekends and require lifting 60lbs. You may think to yourself that sounds like very daunting tasks for someone with multiple sclerosis to perform, but its nothing different than what I did as a computer technician. Its basically the same thing, except through a different medium. Its what I love to do. If I get picked for this job I am going to do this job with every fiber of my being and use every shred of experience I've ever had.
Also my fiancée signed up for nursing school today, she is going achieve an associates degree in nursing but is taking extra credits just in case she decides she wants a bachelors degree. From January to May she is going to take online and night classes while working 40 hours at the car dealership. It won't be easy, but telling us that we can't do anything because of M.S. just makes us more determined. Not many things in life go as easily as you want them, but nothing is strong without some kind of resistance. You can't build your biceps curling a paper towel tube, you have to work hard and use some 20lbs dumbbells!
So I am putting my neck on the line, my game face is on, time to stop worrying and just close my eyes and leap. Fate will carry me there. Things always work out for the best. Some of the greatest things that happened in my life was a result to the times I stopped worrying and let things take their course. There is a fortune cookie on my fridge that says "Expect the worst but hope for the best" and I live that every day of my life.
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