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.