You are not alone.

You can’t make it through on your own. None of us can. That’s why, thank goodness, you are never as alone as you sometimes feel. So many of us are fighting the same exact battle alongside you. You may feel alone sometimes, but you are not alone in being alone.

To lose sleep worrying about a loved one. To have trouble picking yourself up after someone lets you down. To feel rejected because someone didn't care about you enough to stay. To be afraid to try something new for fear you may fail. None of this means you’re weird or dysfunctional. It just means you’re human, and that you need a little time to regroup and recalibrate yourself.

No matter how embarrassed or pathetic you feel about your own situation, there are others out there experiencing the same emotions. When you hear yourself say, “I am all alone,” it’s just your mind trying to sell you a lie. There’s always someone who can relate to you. Perhaps you can’t immediately talk to them, but they are out there, and that’s all you need to know right now.

Life lessons rant

Some life lessons I learned and advice to other people.

If you try to control everything, and then worry about the things you can’t control, you are setting yourself up for a lifetime of frustration and misery. Some forces are out of your control, but you can control how you react to things. Everyone’s life has positive and negative aspects whether you’re happy or not depends greatly on which aspects you focus on. The best thing you can do is to let go of what you can’t control, and invest your energy in the things you can,  like your attitude.

When it comes to damage control for other people, leave it alone!! Don't try and solve the problems that others have made for themselves. Don't even give them a chance to talk their way out of what they've acted themselves into. Allow them to learn the lesson of the consequences of their choices. Don't throw hard earned money away trying to bail someone out of a situation that they created. Muster up the courage to say "no". The best thing you can do for them is to let them take responsibility for their own actions. Make up your mind not to be a rescuer or an enabler. Let them figure it out and handle it. The sooner you do this, the sooner they will learn their lessons. They have their own journey. Keep your money in your pocket and keep the drama and stress out of your life. Resist the guilt trip!! Don't give it any more energy and protect your peace of mind. You deserve to be happy!

When it comes to self doubt, you might think you’re not good enough, but you’ll surprise yourself if you keep trying. Your past does not determine who you are. Your past prepares you for who you are capable of becoming. What ultimately defines you is how well you rise after falling. Don’t ever be afraid to give yourself a chance to be everything you are capable of being. Forget the haters. Never undervalue who you are and what you’re capable of. Excellence is the result of loving more than others think is necessary, dreaming more than others think is practical, risking more than others think is safe, and doing more than others think is possible. It’s time to believe in yourself and in your dreams. It’s time to take the risk of living your true life. It’s time to hold your head up, and decide to never let anything turn you around. It's time to recognize that you have more in you than you've been expressing.

You have the power to live a bigger life. Challenge yourself. Take the risk! Become daring. There are things in your life that are no longer you and you know it in your heart. There is no law that says you have to carry the whole world on your shoulders. And the emptiness and lack of fulfillment inside is becoming too much to bear. It’s time to take care of you. Live your dream. Take off the cape. Do what you know and not what you feel. You deserve to live too! You have needs too! Give yourself a mental break and take time to get centered, grounded and reconnected with your spirit. Allowing your time to be wasted with people who are not serious is not fruitful and it’s stressful. Staying in a job where you are not appreciated or valued or validated is draining and toxic. You will survive. You always have! Life is on your side. You’re more powerful and stronger than you give yourself credit for being. No guts, no glory. You have one life to live, live the life you love and love the life you live. Family and friends may attempt to discourage you. Tell them thank you, I got that, and move on. At the end of the day, it’s your life. You deserve to be happy. You deserve to make your life a daring adventure and to manifest your GREATNESS. Keep in mind, it’s lonely at the top, but you eat better.

Never let anyone crush your dreams. Do just once what they say you can’t do, and you will never pay attention to their negativity again. Don’t walk away from these negative people… RUN! Good things happen when you distance yourself from negativity and those who create it. Truth be told, no one has the right to judge you. People may have heard your stories, but they can’t feel what you are going through; they aren't living YOUR life. So forget what they say about you. Focus on how you feel about yourself, and do what you know in your heart is right. 

It sounds harsh, but you cannot keep every friend you've ever made. People and priorities change. As some relationships fade others will grow. Appreciate the possibility of new relationships as you naturally let go of old ones that no longer work. Trust your judgement. Embrace new relationships, knowing that you are entering into unfamiliar territory. Be ready to learn, be ready for a challenge, and be ready to meet someone that might just change your life forever. 

Be patient — even if you don't have a dime in the bank, lost your job, or your money. Be patient. You have the power in you to pull this out. Don't judge yourself based on what you don't have. What you have is enough. Hold the vision. You have the power in you to resurrect your dreams, and make them become a reality. Work on yourself. Believe in yourself, and in a power greater than yourself. Be patient and keep moving forward. Things will work out for you. 

Life will keep moving. Some people will be there with you for some time. Some people will go away. But those who find you special will always find ways to be with you.

Sometimes it’s impossible to know exactly how another person is feeling or what kind of emotional battles they’re fighting. Sometimes the widest smiles hide the thinnest strands of self-confidence and hope. Sometimes the ‘rich’ have everything but happiness. Realize this as you interact with others, long before you pass judgement. Every smile or sign of strength hides an inner struggle every bit as complex and extraordinary as your own.

It’s a sage fact of life, really, that every one of us encompasses a profound and unique set of secrets and mysteries that are absolutely undetectable to everyone else. So smile at people who look like they are having a rough day today. Be kind to them. Kindness is the only investment that never fails.

Forget all the reasons why it won’t work, and believe the one reason why it will.

You are stronger than you think you are. It doesn't matter what you are facing...a lost relationship, job, bankruptcy, foreclosure, health challenge, or financial situation. You have the power in you to recreate it all over again from scratch. It does not matter how old you are. Don't beat yourself up. It's natural to feel sorry for yourself, or feel frightened and want to give up. It doesn't even matter if the people that you thought would have your back have deserted you. You are still breathing. You're still here, and you have the power to win.

You are more powerful than you think you are. Remind yourself of this. Stand up within yourself. Gather your mental, emotional, and spiritual strength, and speak from deep within your spirit and your soul. Take back your power Say..."I will survive. I will thrive. I am coming back. Giving up is not who I am. I will stay the course, and persist until I succeed." You might have to do this while down on your knees, praying, crying, and screaming at the top of your lungs. Resist the feeling of being overwhelmed, powerless, or being a victim. You will survive and thrive again!!!  

Public Misconceptions

When you have had MS for a long time, it's easy to forget what it was like to not have this disease. It's also easy to not think about what it's like from the outside looking in. Recently, I overheard a discussion from a group of people at work talking about the reality show, Dancing With The Stars. I never watch it, mostly due to the fact the entire show can be summed up in the title. They were talking about Jack Osbourne, son of Ozzy Osbourne, who was diagnosed with MS this year. One person in the group said "I don't understand why he has MS if he can dance, he must be faking it to get attention." It made me realize that a large population of people still do not know what Multiple Sclerosis is. This makes me want to be a patient advocate speaker so bad.

From a wheelchair to running shoes

I'd like to share my journey from disability to what I am today, a happy and energetic person who runs every other day.

My journey started when I was about 13 or 14 years old. I started noticing my body going through changes (other than puberty). I noticed I started getting tired at random times, anywhere from after I woke up to the middle of the day at school. I also noticed my speech was slurred, random body parts feeling numb, and being very forgetful. Every day was a different experience.

Most of the symptoms went away for several years until I was 19. I started having vision problems and experienced the all familiar fatigue again. After the trips to the optometrist, the ophthalmologist, and the neurologist, I learned that I had Multiple Sclerosis

Two years later, I lost feeling from my waist to my feet. I was in a wheelchair for two weeks. I really didn't think I would be able to walk again. Luckily, I was prescribed a high dosage of an aggressive steroid every day for a week and got feeling back in my legs. After that, I was off and on a cane until 2009. I haven't had an issue with my mobility since then.

I started running in the warm winter of December of 2012. I needed a hobby that got me out of the house and wasn't too expensive, running was perfect for me. I would run half a mile twice a week until it got colder in January. My legs started to feel stronger and I felt like I could breath easier and had more energy. When it got warmer outside I started running again. I'm proud to say since March of 2013 I've been consistently running 3-4 times a week with a distance of 1.5 to 5 miles each run. I am grateful to be as healthy as I am, for being an MS patient who has had the disease for almost 17 years. My motivation for running is to run while I still can, and for those who cannot run, or even walk, themselves.

Just checking in.

It's been a while since I last wrote. Life has been crazy these last 5 months. Since then I got a job, had my heat go out, had car problems, had a fire in my home, and got fired from my job. On a good note, my wife graduated from nursing school and is now working at a hospital.

My health has been okay, I've actually never felt better. I took up running as a hobby, I like it. It's one of those hobbies that is cheap since all you really need is a good pair of shoes. I've been consistently running 3-4 times a week. I have a favorite spot I run at in downtown Memphis that is beside the river. Other than the sheer beauty of the Sun setting over the Mississippi River, this park has a lot of other runners that run there too. It also has mothers pushing their children in strollers, people walking their dogs, exercise & yoga groups, as well as the occasional kite flying. I'm actually thinking of running a 5K there next month if I have enough money to attend.

One thing that sucks the most is my air conditioning going out. It has been hot lately in my house, sometimes in the mid 80s. I have a box fan and portable a/c to help cool me and my wife off temporarily until we get our cooling fixed. My face has been becoming numb because of the heat, but other than that I feel okay. As long as my legs don't become numb again I'll be happy.

The job I had was being a copier technician. I learned how copiers worked and also I learned how to put them together and troubleshoot problems. I met some nice people there. The main purpose for working that job was to support my wife long enough until she graduated nursing school, but the more and more I learned how to do my job the more I liked it up until the day I got fired. I was not very dependable due to my car breaking down so much and having to miss work. Every so often it would shut down and not start back up for hours or even days. Each time me and my father worked on that vehicle and replaced parts it would eventually die on me again. I really had no other vehicle I could drive since my wife drove my SUV to school, sometimes she had to drop me off work and pick me up after I was done which used a lot of gas that we didn't have much money for.

Although I truly understood why I was fired, I was not prepared for it. But at least at that time my wife finished school and I was able to attend her graduation. Now that she is working, I can find an easier and less stressful job to do. I won't have to slave away to work a backbreaking, dirty job in order to live the bare minimum for bills, food, and gas only. But I guess I could say that I'm lucky enough to be able bodied to be in the work force compared to most MS patients.

I haven't seen a neurologist in a long time, not that I'm relapsing or anything. My current one is just a doctor to have in my back pocket in case I have a really bad exacerbation. He's one of those doctors that will rush you out if he can unless you have something serious going on. Once my wife gets health insurance from her job, shes going to add me onto it. When that happens I'm going to see a MS specialist I found that practices right here in Memphis. It will be good to have a doctor again that understands or actually gives a crap about me.

Life looks like its going to get better now that the hard parts are over. I think my next goal is to make life happier and easier. I may just find a part time job, so that I have more time to take care of the house and pets, and also have more time to do my favorite hobbies. More free time for being outdoors, going to concerts, and exercise. I may even join a running group to make new friends. The possibilities are endless.

Living with "MS" stands for living with "My Self"

Living with MS is hard to do. MS usually stands for Multiple Sclerosis but in this case M.S. stands for "My Self"

It's so ironic, a disease where your body is fighting your body.  For those who are confused or don't know what MS is, it's a disease where your immune system attacks your brain. It causes disruptions with how your brain operates. For me, it affects my thinking and my speech.

Sometimes I can't speak right. My speech is slurred and have trouble with word finding, and I mean to say something but say something else. It has caused me a lot of grief and frustration. I get so mad at myself because my impairments cause misunderstandings and undesired repercussions that I don't deserve. I feel helpless, like I can't catch a break, and because I can't speak or think well, my attempts at pleading my case  or explaining  myself fail.So the real truth isn't exposed, which affects my relationships with my peers. I usually just give up and let people believe what isn't the truth, I end up feeling like an innocent man going to prison. This is why I have no friends.

I'm tormented by my own self being. I feel like no one can understand me or believe me. I scrutinize and punish myself frequently, I get upset when I say the wrong thing or can't say anything at all. I may as well put a toothbrush between my toes because my foot is in my mouth so much.I really hate myself sometimes.

I wish there was a cure already, I'm getting exhausted living this way. I feel really depressed, I'm going to see a psychiatrist tomorrow.

Bad Timing

I have overcame many obstacles in my life, and I have achieved goals that I am proud of. In spite of being diagnosed with multiple sclerosis at a young age, I went to college, became a home owner, and found a wife. All of which took hard work (especially finding a wife!)

In 2011 I found a good job, a position that required physical labor and mental focus, something that MS patients aren't good at, but I made it work. My goal was to support my wife and help her get through nursing school. She didn't have a job at the time and she exhausted her unemployment benefits, but that didn't matter. I made just enough income to pay for our bills, utilities, the mortgage, gas for my wife to travel to school, and food for both us. My wife only has the rest of this year, plus one more semester to become a registered nurse. We both knew we only had to survive for 6 more months and life will be better for us.

Unfortunately, the owner of the company I worked for came to our office in September to tell us that the manufacturer that makes the products that we sold and serviced, thought that they could do a better job than us. Meaning that they were taking over. Under their terms, we could not even sell any products that our customer base comprised of. So with that in mind, our office was closing. From that moment on, I have frantically started looking for another job. The very thing I was afraid of came true, and that is the threat that might affect everything me and my wife worked for.

Although I am worried that I won't find another job, I hope that I will find one. I just have to. It was very hard during the month of October for me. Along with the disappointment of not getting hired for company that was taking over, cleaning out our office so we could close, was torturing. I couldn't help but think why couldn't this have happened at a later time? Why now? If only it was 6 months later, me and my wife would have an easier time for once in our life.

Along with my financial worries, my health is bringing me down as well. I am unable to sleep at night most of the time, largely due to muscle spasms and cramps in my legs. Because of my insurance, I am unable to visit doctors in Tennessee. I am bound to the state of Mississippi for my care, because I have Medicaid and it is only provided by the state I live in. At the moment, I am unable to leave Mississippi because my wife is enrolled in the nursing program in Senatobia and she has to be a citizen of Mississippi.

112 pills of treatment in my reach, yet I'm unable to take it.

 I am unable to find doctors that will accept my insurance. Because of this,  I'm unable to get the necessary prescriptions and care that I need. I have MS treatment, and lots of it. See? Four months worth! But I can't take it. Here's why...

In order to take Gilenya (pictured) I must do a 6 hour observation to make sure I don't have any adverse reactions to it. Currently, there is no clinic, doctors office, or hospital I can have this observation done. There's 2 reasons for this. One: My neurologist is in Memphis, TN. Although he does accept my insurance despite being in Tennessee, he is not authorized for hospitals in Mississippi. Two: The places he is authorized for, does not accept my insurance. Quite the conundrum if you ask me.

I have to work as much as I can so my wife can graduate college. I also have to work as much as I can before I become more disabled, but since I can't take my treatment the disease is going to progress faster, and since I can't find a job I'm afraid of losing my house and my wife dropping out of school. The main obstacle in my way to having a better life is just getting a JOB. The rest will take care of itself.

Pain

I have more pain than I can cope with right now. I don't know how I can make it go away. I don't know if it will ever go away. I have such pain physically for a long time. But that's not the only pain I have. I hurt emotionally. So many people depend on me and I try hard not to let them down, but sometimes you just can't help it. So many things on the line needing my attention. It's unrelenting. I have too much on my back and I desperately need relief. I also feel like I can't express my feelings in order to relieve this pain. I don't have any friends. I have no one to talk to. Well, I have one true friend but things aren't going very well right now between us. I really don't know what to do.

Even heroes need saving.

I like helping people. Sometimes I go out of my way to make people happy and to do the right thing. It takes more effort, but its worth it. As Martin Luther King Jr. once said "the time is always right to do what is right".   Yesterday I had only $7 in my bank account. I was going to use it to buy lunch but instead I bought benadryl for my wife because she has bad allergies.

A few weeks ago our cat has been acting weird since my wife cleaned a room. It no longer had an obstacle course of unpacked boxes and textbooks. I was reluctant at first to take it to the vet because I didn't think anything was wrong with it but we waited a day too late for our last cat and it passed away. We took the cat to the vet and the veterinarian said that she was fine. I sometimes resent taking the cat to the vet, spending $200 on a healthy cat seemed pointless. But I remind myself that I did the right thing.

I'm a nice guy. I don't understand why life deals me bad cards. I never hurt anyone. If there really was such a thing as karma, then I would never have a negative thing happen to me. Every day I worry what bad news will come my way.

It's been rough this month. Lately bills have been getting higher, as well as the temperature outside. My fingertip on my right middle finger is numb, at least I can still use the rest of it on special occasions.

Today I got a letter from my insurance saying they denied coverage for my new medicine because its "not medically necessary".

"The request does not meet plan criteria for an exception to the preferred drug list. Other medications are available on the preferred drug list. Coverage for the requested medication is provided for patients with a diagnosis or relapsing forms of multiple sclerosis with a documented history of contraindication, intolerance, or theraputic failure of other preferred multiple sclerosis agents suck as Avonex, Rebif, or Copaxone. Information reviewed does not support that the patient has previously tried these agents."

I have been diagnosed with MS since march 3rd, 2003. Since then I've been on the treatments Avonex, Celcept, Copaxone, and Tysabri. All of these medications should have been listed in my medical records which they should have. All medicines I listed either didn't work or did more harm than good. It's very disappointing to read something like this and know what I've been through to find a treatment that works for me. All the money spent on gas driving to infusion centers, all the time spent in doctors offices, all the hours of work I missed to attend appointments. Enduring all the pain from shots and their side effects. It makes me sad to feel as though I've gone through all of this in vain.

Life as of now

I'm finally on a disease modifying treatment once again. I haven't been on any treatment in over two years.  I've been taking the new, first ever, oral MS treatment call Gilenya (jeel-in-ya). I took my first dose on June 1st, 2012. This medication has caused some side effects in testing, so as a precaution I had to be monitored at a clinic for 6 hours to make sure I didn't have any heart problems.

I tolerate the new drug quite well, except Wednesday I felt very weak and had shallow breathing. I've been experiencing  some added fatigue on top of my existing, day to day, fatigue. I have called my neurologist to let him know I've been having more fatigue but he has yet to get back to me.

I'm so happy I just have to take 1 pill (a very expensive pill) a day instead of getting a subcutaneous shot every day (Copaxone), or a weekly IM injection once a week (Avonex), or a monthly IV (Tysabri). Avonex made me feel horrible, my joints ached and felt like I had the flu. Copaxone hurt and was mutilating my arms. Tysabri was an inconvenient monthly event where I had to drive 2 1/2 hours to an infusion center full of senior citizens with cancer. I was the only patient who was under 50 who had a full head of hair. Needless to say I stuck out like a sore thumb.

Though I worry about the upcoming relapse season (summer), my biggest concern is my wife. She's been feeling dizzy and her legs hurt all the time. I pray that she isn't getting a relapse. She does not have a neurologist, because she doesn't have health insurance. I'm trying to take care of her the best I can. I'm helping her get through nursing school, and I'm happy she made some friends there. I feel helpless sometimes when she feels sick. We harbor a large portion of understanding for one another but just because we both have MS doesn't mean we both know what each other is going through.

She's my brains and I'm her body. She's got better memory and I'm stronger than her, but we both suffer from fatigue and motivation.I still have unpacked boxes from when we moved into our house back in August. I get disappointed with myself when I see how messy our house is and I'm too fatigued and lack the motivation to clean.

I wish my doctor would prescribe me my past prescriptions, since my general practitioner retired I haven't had any pain pills, sleeping pills, anxiety medication, or medicine to fight my chronic fatigue. Maybe I should just break down and pay a doctor who doesn't accept my insurance to treat my MS symptoms that my neurologist ignores.

Back to square one.

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.