After giving thought to this for some time, I have decided to ask you to come walk with me as I open a door I have kept closed to you. This is going to be difficult but something it is time I do share more of what the MonSter has done to me. This is the letter I wrote when I made my appeal for my Social Security benefits a few years ago…. Step slowly into my life now but leave any pity you have behind for I am not looking for that nor do I want nor need that save those emotions for others who look for and want it…..Make sure you have your favorite beverage and tissues with you and you are settled in a comfortable position…oh and with an empty bladder……here goes I have waited and teased as long as I can….

As a little girl, I was energetic, full of life and loving every minute of it! I dreamed of becoming a mother and nurse, I have always loved to work from the minute I discovered it, as I began very early helping my mother around the house. I loved to earn my own money and I would pick up pecans to sell as well as work in tobacco. By the time I was 12, I was a baby sitter and by the age 15, I worked part time in the local pharmacy. Throughout high school I worked, went to classes and participated in many extra curricular activities. I graduated from high school as salutatorian and went on to recognize one of my dreams…that of becoming a nurse.

While in nursing school full-time, I worked 2 part time jobs. My days were very long and tiring with little time for me to be the average student but I knew my dream would come true and as a nurse I would be helping others. Amazingly, somewhere during this time I met Carl who became my husband in 1978 and still graduated as a Nurse in 1977 with honors.

In November 1988 on a Saturday, I woke with a sudden onset of double vision. Two different ophthalmologists and a neurologist saw me where I was diagnosed with the wrong diagnosis. I continued working and enjoying life with no further problems until 1990 when I began to have additional problems. I underwent a MRI, spinal tap and many other lab tests; based upon these results I was told I had Multiple Sclerosis. Being a nurse I knew so much and the diagnosis was met with very mixed feelings. I finally decided after several years of all going with nothing unusual that I was one of the very lucky ones and I was going to BEAT IT!

Several years later I began to experience additional numbness throughout my body and fatigue, as I had never known. When a couple of months passed, I could not understand why I had not improved and was always so unbearably tired! Just to take a shower was an incredible effort that left my heart palpitating, head spinning, bones shaking and body sweating. In keeping a positive attitude, I told myself it would pass very soon and I would be fine. Outside of work, I spent my time resting in bed every evening, on Fridays and every weekend. Tiredness became a way of life while I kept adjusting my life in exhaustion downward, maintaining a 40 hour a week work schedule and nothing else. In retrospect, there was a tremendous amount of denial on my part of how debilitating, abnormally exhausted I was. I would tell myself I just needed to rest more on weekends and that I’d catch up on my rest over a vacation in bed. I was barely making it through the day at work, often taking breaks with my legs up. I have never experienced my work as depressing and have always felt fortunate to do what I do for a living– after I could no longer work as a Registered Nurse in a hospital environment helping assure people had quality affordable health care which makes a positive differences in their lives. This was always been a tremendous source of satisfaction for me. I loved my work.

As time passed, I saw my friends falling by the wayside, because they did not understand what I was going through. At times I knew my family did not even understand. The medications did not seem to help and I was not getting any better, so I became frustrated. I desperately wanted to escape this horrific illness, which had debilitated my entire body. I remained determined not to give up on my career, hopes and goals so I went to a neurologist at the MS Center in Atlanta who specializes in treating Multiple Sclerosis patients, in hopes of finding the answer.

Any activity was difficult as it felt like it took a ton of energy, like I was climbing a huge mountain with 100lb weights strapped to each leg! Even sitting, standing, reaching, bending and just talking was unbearable, as it caused “bone crushing” fatigue, incredible exhaustion and pain.

With the Central Nervous System involvement I experience numbness, tingling, pins and needles, weakness, blurred vision at times, pain, parasthesia, cognitive difficulties, unbearable fatigue, incredible exhaustion and breathing difficulties, bladder and bowel difficulties just to name a few.

So I am still hoping and still fighting! I have tried many medications, vitamin and herb, with little to no relief. I have lost friends, respect and dignity from others, while losing my independence, career, and ability to have children, loss of hobbies, recreational activities and even the ability to care for my house on a daily basis. I not only mourn those losses, but it also breaks my heart that I can no longer clean my toilet, dust my furniture or just stop by the grocery store for a few items, without collapsing and paying dearly for days or even weeks!

Many people I meet ask me, “so, you are tired all of the time?” Believe me, just feeling tired would be bliss! Every single day, I feel like someone carrying several hundred pounds of weight on my head, shoulders, arms, back and legs; and I feel like someone is compressing my entire body, cutting off all of my circulation and making it difficult to breathe, until I feel like I am going to implode! Now, I pray every day that God gives me a day so wonderful that I would only be tired! That would feel SOOO good! And, I could actually lie down and get some sleep, instead of feeling like I am being tortured beyond belief.

In all of this, I cannot thank God enough for my husband who was always there for me in support, even when the rest of the world seemed like it was against me. Building new friendships is heartbreaking and disappointing, because people tend to avoid me, even though I try not to make my illness the focus of relationships. Yes, I have felt isolated, lonely. The only comments people tend to make to me are heart-wrenchingly hurtful.

I realize people mean well, but being a “positive”, “never give up”, “never give in”, “never let illness stop me,” “never let my dreams go” kind of person, it really hurts when people assume I am not sick, because I am weak, I do not try hard enough and lack a positive attitude! They make comments like, “maybe you just have a lower tolerance than most,” “you just need to stay more positive,” “you’re lucky you don’t have to work,” “you’re lucky you don’t have kids,” “gee, what do you do all day?” “Why couldn’t you at least work part time,” “but, you LOOK good! Or, “but, you LOOK like you are doing great!”

I never willingly gave up my career, nor would I ever willingly accept this illness without a fight! I went to work extremely sick on countless occasions in my lifetime, but this illness has rendered me debilitated beyond my will; and, I would be working today if it were at all possible! I have always been a determined person and would never have chosen to give up my career! I still have very vivid dreams about going back to work and being extremely happy; but then I wake up and realize it was only a dream!

Hey, I enjoy when people tell me I look nice or that I am attractive, who doesn’t? But, it is hurtful when they do not believe I am ill, because they cannot SEE it! In other words when they say, “yea, but, you don’t LOOK sick,” I feel like they are saying, “but, I don’t believe what you are telling me, because I cannot SEE it!”

After years of battling this illness, I have found that the mourning of losses of dreams, goals and life plans is often done alone, without the shoulder of friends and, in too many situations, even family. I believe this is a tragedy among tragedies! In a time when a person needs support the most, loved ones are running, avoiding, blaming and denying reality!

For many reasons, our friends and family often tend to stay in denial about illness; somehow, they think if they do not acknowledge it, then they will not have to deal with it. However, how can they be compassionate about a situation until they acknowledge that the situation exists? And, why do they insist on treating the person like they are to blame for the disease, because they need to be more positive or motivated to cure their disease? Is that how they would treat someone who broke their back in a car accident; like they are just using it as an excuse for not being able to do something, because they just have a lack of motivation?

Think about it, if I told someone I broke my leg and could not go skiing this weekend, would they say, “oh come on, you can go, just be tough!” Or if my arm were being eaten away by gangrene, would they say, “oh, you just need to think positive.” Or, if a child swallowed a deadly poison, would they say, “nah, don’t call the hospital, you are just being overly sensitive.” Or if I told them I needed a liver transplant, would they say, “yea right, your liver is working fine, who cares how you feel or what the tests say!” So, why would they disbelieve me when I tell them I have a disease, act like I lack motivation and treat me like I just need a better attitude to cure it?

I have learned that if all of those who cared about us would rally around us to say, “we are sorry for your losses and we mourn with you,” we would have the strength and desire to fight even more, because we would not be wasting all of our energy trying to explain things over and over, defending our position and yearning for their belief in us; and, in the meantime, we would feel loved just as we are and find new goals and dreams which are reachable with our uninvited limitations.

Unfortunately, some diseases and disorders do not yet have treatments or cures that work on every person; so, they are left with a body that will not cooperate with their desires! They are not giving up; they are doing all they can, because nobody wants to live with limitations!

I have watched myself and others struggle with career losses, insensitivity of family, loss of being able to have children, loss of friends, seeing dozens of doctors, incurring tons of medical bills, countless disappointments, endless frustrations, bottled up anger, unavoidable depression and tragic lack of support.

Just writing this and completing all the paper work for the Social Security Disability has required so much of me as I have had sleepless nights thinking about this and many weeks to work on this. When I was well, it was nothing for me to write a 10-15 page report in a day or two; but, with a debilitating illness, I battle unbearable fatigue, pain and incredible cognitive difficulties, as it often takes me several hours to write a page sometimes even a paragraph.

There are so many people out there battling serious illness, which has robbed them of their goals in life; but even worse, their spouses, parents, siblings and friends who do not understand and refuse to love them with the disease! It is appalling and shocking how someone can suffer from an unwanted illness, lose control of their bodies, lose the ability to chase after their dream and be treated as if they are “choosing” to be ill! I also find this to be the case as many go through the process of fighting for Social Security, which we are so entitled to receive.

I am not psychoneurotic. . My ego strength is remarkably healthy, especially given all I’ve lost and the uncertainty of my prognosis. I would say that I’m depressed or discouraged about 10 percent of the time. I do my best to see every day as a new day, with tomorrow being maybe one day closer to a cure for Multiple Sclerosis which would allow me to maybe get my life back. There is no secondary gain to my being sick. I hope some of what I have said here will help you understand me better and you will be a source of support instead of a source of opposition, after reading this. Please help me as I am disabled for work and much of life’s normal actives.

Yes that was the letter I wrote and filed with my appeal and still lost but later won… Today I my say my ego strength is very healthy and I have found a way to say Life Is Simply Good through the help of a dear friend who encouraged me to view myself differently and enjoy each day….. That is what a good friend can and does for you…walks in your life when you need one most, recognizes your needs, and encourages you to do the same, steps back but never walks away….Thank you for being a friend….a true friend….

Now go be a true friend to your friends….call some one you have not talked with but have been thinking about…..send a card to someone you want to cheer up just to say hi……just be that special friend today and every day.