Telling the truth

My friends I need to tell you I have been lying to all of you. I hope you will understand i have done it for your benefit more than mine. I've told you when you asked me "Derek how are you doing ,or how are you?"My response's either in person as been a flippant one of "oh, I'm fine or I'm hanging in there!" but that's a big lie. I'm not. I feel like shit and it's not getting any better.The truth of the matter is the new treatments that my new doctor, Dr Hojnacki doesn't seem to be working just yet.

He has a new plan of every 4 weeks with infusions of high dose steroids then 4 week of chemotherapy treatment infusions then see how it works and if I don't respond blood transfusions to be done 6 weeks apart. All In hopes of wiping my immune system clean and starting it anew. This is a very controversial optional treatment but I have to fight and never give up. I know this shit is hard on my body and even more on my mine, because I have to do it alone. It makes me angry and most of all abandoned and betrayed. I made promises and never did I think I would be alone for the ones that were made in return to me. I have not said bad things about who i thought was my best friend but it seems that now its time for me to stop pretending that my life was not a big lie too. Talk about a giant let down and I feel so stupid for giving my love away now to be turned away!!! talk about hurt. I will take watever MS dishes my way,but to feel the firey stab of betrayal hurts more than you can imagine. Ive lost my best friend

Im trying to deal with the house selling and all the other things and the rentals that I'm left with
and running out of money quickly. I mind is not working properly because of MS and all the drugs I'm on. thinking is too hard so i feel like im in some kind of a fog that never clears.

I need Help!!!

Thank you all for your support, it means the world to me. Letters, post cards, emails and phone calls don't go unappreciated. Thank you friends.

Derek

Many people have a wrong idea of what constitutes true happiness. It is not
attained through self-gratification, but through fidelity to a worthy purpose.

Helen Keller

You Can't Go Home Again

Is it normal to feel like a failure if you do? What do my family and childhood friends think of me now? Do they look at me with pity or admiration because of what I am enduring? What do they say behind my back? Things like that run thru my mind during my lucid moments.

Clarity seems so extraordinarily hard to come by as I seek out a sense of some semblance of health and well being. Even writing this blog is an unbearable struggle just trying to form words and create a sentence that makes sense. Yet, I stumble on not quitting and praying for relief. Thank goodness for spell-check and auto type correction. LOL !

If you have read the Novel You Can't Go Home Again by Thomas Wolfe you understand my trepidation about returning to the place of my birth. In his book he wrote "You can't go back home to your family, back home to your childhood ... back home to a young man's dreams of glory and of fame ... back home to places in the country, back home to the old forms and systems of things which once seemed everlasting but which are changing all the time — back home to the escapes of Time and Memory."
“Nostalgic” Salamanca in lower western New York. A beautiful place nestled on the state line of Pennsylvania separated by the Catskill Mountains and the expansive Allegheny State Park. Majestic in the summer and view capturing in the winter.

I have made the transfer from my Sisters arms into the awaiting support of my extended family here in an even smaller town just outside of Salamanca called “Little Valley”… No Joke. Even smaller than home but beautiful in its own right! It even boasts a small Amish community on its outskirts. Every morning I get to hear the “Clickty-Clop! Clickty-Clop!” of a covered horse drawn buggy making its way down the rural towns main thoroughfare. I peer out the front bay windows to see what looks like a small Amish couple sitting side by side. She bundled with blanket wearing a bonnet, and he shrouded with what looks like a very youthful beard and light brimmed hat. Both riding expressionless other than their snowy “air-chilled” rose colored cheeks. They look content in there own cloths. Not trying to be something they’re not.

My Aunt Winifred and Uncle Chris have graciously rented me a small one bedroom apartment in a cute Victorian 19th century home right next door to them so they can keep an eye on me in case I need immediate help. My first step to try and stay independent.

I did not want to feel as a burden to my sister and brother-in-law any longer although I was reassured I wasn’t. My sister help me thru the toughest of times and I will never ever be able to repay the gratitude I have for her and Rich. We traveled back to Salamanca for my mothers 60th birthday party for a long weekend. Nieces in tow and me feeling way too anxious about leaving the comfort and safety of her for some more unknown.

With my 12 boxes of what were once my life and a heart full of dreams I set off on another chapter of uncertain and unwritten stories. The day finally arrives for Brandee, Rich and the girls to head 5-½ hrs north back to their home and lives. Hugs and kisses for all the girls, then a hand reaches for my brother-in-law Rich… but no!! We hug and I thank him man to man and tell him how proud I am that he and my sister have done so well. His hulking embrace squeezed so hard I swear I heard ribs crack. Then he whispered in my ear to stay strong…your going to make it. I will be all right, that things are going to be OK now you have your family surrounding you. His voice cracked while he whispered and I could feel the stream of tears rolling down my face. This coming from a man that has been in two wars and seen his share of death and destruction. Even through my own personal destruction he is concerned for the well being of others just like a soldier under his command. Funny thing is we wrote each other while he was in Afghanistan and I sent him the same sentiments. Now he returns the feelings unconditionally.

Packages of days gone by sitting on the floor of my new crib, I prepare for my first night of staying alone. I still have difficulty walking and unsteadiness trying to stand with my “new” onset symptom of Vertigo.
What a devilish prank it is to try and stand and have the room flip side to side and feel like you’re a big turd being flushed down the toilet because you feel like crap anyhow. It may have been fun as a child getting off a ride at the local Fair but now? Come on. I’ll pass thank you very much!!! Ill spare you the details of side effects of medicine that I’m on trying to treat it, but lets just say its not pretty. Dr Goodman is doing what he can to help with his vast bag of medical knowledge however nothing over promising yet. Even the “new” drug he helped to introduce. After my last visit I felt extremely disappointed when he uttered the words “ Derek Amprya wont help you!” So here I sit disappointed and hungry from the Mega dose of steroids he has put me on trying to calm down my latest MS exacerbation. I feel like a starving pig that can’t fill its belly…I’m so hungry I could eat the A#$ out of a dead Florida based “Skunk Monkey” Hee He!!!

Nasty taste in my mouth from drugs and such I push on not giving up hope.
I certainly long for the good times from the life I built, but friends call and people make sure I’m holding my head up ever so gently I persevere. Never surrender never say die!!!

So to the tales of You Can't Go Home Again, I would agree you cant go back there “mentally” because like time, things change and so do we. Its inevitable that things happen. Even Dr. Goodman stated we all get something. I unfortunately am one of the unlucky ones to get MS. But, why it must be the nature of things or Gods way of getting our attention and saying slow down, look at what I have made for you! If you don’t I may take it away. MS has brought me back to a place I strove to run away from. Bigger, better, brighter was what I thought. Its true there is all of those things out there but sadly at the cost of losing touch with family and friends. Fortunately for me family and friends look past the disease and see Derek Nickerson. After seeing so many people and looking at them look at me I realize the only thing that has changed is me. They all love me for me and know my heart and the kind of person I am! Thank You Loved ones and Friends, Thank you!

Derek

“But there is suffering in life, and there are defeats. No one can avoid them. But it's better to lose some of the battles in the struggles for your dreams than to be defeated without ever knowing what you're fighting for.” PAULO COELHO

HOLIDAY OF THANKS

HOLIDAY OF THANKS

Tis the season of giving thanks to family and friends, but where do I begin. It is easier said than done for me to dig deep and get into the holiday season. This past year it has been very difficult to find something to be thankful for, but I have a lot; my friends and family. My first time in over twenty years I am spending with my family for the holidays.

It started at thanksgiving dinner table, sitting there looking at my sister, brother-In-Law and the four beautiful girls they have. Rich began with our thanksgiving prayer. Holding hands we went around the table telling each other of things that we were thankful for. Finally, it was my turn I could only think of them and how they have been there for me and the girls that have become my little nurses. In that moment the world disappeared and only family was all that remained. Even Richs’ mom gave thanks that I was with family and sharing love. I did not feel empty. People are here for love and support.

Though my friends were not sitting there at the table I feel the love from everyone thru the phone calls and cards with follow up e-mails. I have so much to be thankful for but have been blinded by this Disease. At times it is painful physically and mentally but you, my friends, hold me up. Thanks for letting me lean on you. I have taken the advice of a friend and have been sharing my pain and suffering with you in order to get me over the hump. I truly appreciate it from the bottom of my heart. Thanks for letting me.

With the relief of not hanging on to the painful plate of circumstances from the past year alone, I give thanks to everyone that has been here for me. However I don’t feel as though I deserve the caring outpouring of love from you. I don’t know how to repay those of you that have been reaching out. I’m blessed to have become friends with so many beautiful people over the years. My heart has been touched.

I apologize to everyone as my emotions wane back and forth with what is happening. I have a great MS peer counselor and have started medication to help me emotionally. One thing that he is telling me is to not to try and do it alone let people help. I am having a hard time with that because I’m the one that is supposed to help others. It’s who I am, its every fiber of my being.

With that said if anyone needs something fixed or repaired just call I will help. I may not be able to swing a hammer or hang a ceiling fan but I know people that can or I can tell you how to do it over the phone. I just want to give back so badly. It makes me feel whole again, it makes me feel important. It gives me joy helping others. You allow me to find my smile knowing I provide support for others!

So for that I have so much to be thankful for. Take the time to embrace what you have and Love those around you with all your heart you never know when you may need their help…. Happy Holidays!!!

Derek

“We cherish our friends not for their ability to amuse us, but for ours to amuse them.”

Phoenix Rising

Phoenix Rising

Sorry for not writing sooner, my mental state of mind is giving me more difficult times than you can imagine. My body is giving me more troubles I find it urgent that I write another blog before it is far too difficult to continue. It has become more and more problematical to focus and remember things. I’ve become very disoriented and have trouble concentrating on tasks. I feel it is time for my health’s sake to leave my home in Florida and venture back to the open compassionate arms of my loyal sisters’ in NY. My doctors want to try a new round MS medications to see if they will help to slow the progression of my disease. After reviewing my newest MRI it seems, the Betaseron injections are not working as well as we had all hoped.

With options of; Novantron (Chemotherapy), Tysabri (New antibody monthly infusion), or Copaxone http://www.youtube.com/watch?v=N_ysuwnvUH8 (gladamire Acetate daily injections) the choices are slim. Choosing was sort of made for me because of several factors, mostly because of my financial state. After discussing the severe danger of chemotherapy and how it damages your heart that choice was out. Tysabri is the latest drug of choice that seems to work wonders for all that use it, however the two downsides is the staggering cost of $3,400 a month and the fear of a deadly brain infection. Leaves me with the cost effective $2,200 monthly and no major side effects with Copaxone. Fortunately my insurance covers 60% and they have referred me to the Chronic Disease fund for financial aid for the co-pay balance.

My mother, aunt, and childhood friend traveled to Florida to pack my bags and shuttle me to New York. They were very concerned for my declining health. The love of family outweighs all else.

My life has been quite exciting for many years and I have been blessed with so many skills that I can’t describe the feeling of pride in all that I have accomplished. Uncertainty and dreams have filled my memories with success and way to many failures.
Unfortunately I don’t have the luxury of escaping reality, I must turn and face it with broad shoulders and face my fears. With all of my friends help I will not give up. You give me faith and hope!!! Keep writing and sending the letters and post cards. Thanks for not turning away.

I’m trying to take back my mind, if I can control it and not let it master me, I win! Challenge yourselves daily and be amazed at what your capable of.

It would seem that my immune system is very powerful and for every thing that I try to do to help; it revolts. Lets see from what is remaining of my former life I can resurrect….lose my health, lose my wife, lose my house, , lose my job, lose my self-respect! Look at my ashes!!!!!

“Most people live their lives hanging on to hopes and dreams that never come true. But… they hold on to them and never let go. A man only needs one thing in life, he just needs someone to love.” Derek Nickerson 2009

Derek

Buzz-Kill

Enough is enough already!!! On the heals of my emotional high I get kicked in the you know what’s. Here is how it goes, I woke up last week and had to use the restroom. It was still dark outside, I roll over and put my feet on the floor and try to stand up to make my way to do my business. Both feet down and ready to go… boom! I hit the floor. What the crap I’m on the floor. I grabbed the side of the bed and sit there for a while and try again. I could not stand up. Now I am in a panic but try not to freak out. I pull myself into the bed and lay there until it starts to get light outside.

With the darkness fading to daylight I figure the unbearable sensation of having to pee it’s time to try the trip one more time. This time I sit up slowly and repeat the process. I gradually stood, this time the floor was solid. As I shuffled to the bathroom I look outside and thought it was still dark. It wasn’t until I turned my head I realized that I could only see from my left eye clearly. I turned the light on in the bathroom and stare into the mirror. I try and cover my left eye and look out my right. It was looking thru gray plastic wrap. I try and focus straight ahead but all I could see was a blackish gray spot. Now I am in a panic. What am I going to do, I need help.

Panicked but not hysterical I open the drawer and take several Advil. Returning to bed I contemplate my next move. I call my neurologist and leave a message to call me ASAP I need to get in there and need help. The return phone call was a huge relief as I was able to get in to see them right away. I was scheduled for another three day round of Solu-medrol steroids at the hospital to help with the attack. A new MRI was also ordered and will be scheduled in the next two weeks. Very forlorn experience!

By the second day of infusions I was able to see but not clearly. My head hurts like heck and I have a hard time remembering anything. The second worse part is I now can barely move my left arm and hand. The numbness has engulfed my abdomen, neck, shoulders and back now. It seems as though my arch nemesis does not like me making mental strides in the positive direction. I am trying to keep my wits and humor as best that I can, however, it’s very hard to find after this move in the chess match between MS and myself. I cannot believe how lonely this has made me feel.

While at the doctors they diagnosed me with Ataxia http://www.mult-sclerosis.org/ataxia.html so I have all that come with it to look forward to. Great add that to my plate. I am still trying to stay positive but I am finding very difficult not to become cynical. My depression level has increased and feels like it’s working on holding my head under water and not letting me breath. This cannot be happening to me. I have done nothing to my immune system to deserve this punishment. Maybe after all the years of me being “Mr. Nice Guy” its time for me to suffer for being too nice.

My shining light in the fight is my family and friends that call and check on me to make sure I am all right. Thanks to Bruno people that I do not even know that send letters, post cards, and e-mails of encouragement keep me going. The only thing they cannot help with is the overwhelming lonesomeness.

I try to combat the feeling by attending church counseling for my personal issues and seeing my medical therapist for guidance mentally. I thought I could be a tough guy and try and handle my illness alone by using humor to pretend it would never catch me. I underestimated my immune system and its powerful abilities. It seems as though I am in for a long run. (No pun intended)

I made a promise to all of you to keep fighting and never give up. I beg of you to not turn your backs on me. I am struggling to retain my independence!! I need your help to "stay in the saddle".

What a buzz-kill!!!!

Keep praying for me friends,
Derek


“Life is too short to wake up with regrets, so love the people who treat you right, Forget the ones who don’t, and believe that everything happens for a reason. If you get a second chance, take it. If it changes your life, let it. Nobody said it would be easy…….they just promised it would be worth it.”

BACK IN THE SADDLE

All right enough doom and gloom. Yes, my life sucks right now and my body is trying to call it quits, but guess what? I am not. Lets get back to the funny Derek shall we? I don’t have a lot to offer physically however my mind is still ticking the hours away. I cannot bury my head in the sand and pretend this is not happening or that it will go away. It is what it is! What I can do is try and make the best of my time while I can.

At the request of my physical therapists and friend Bruno to get riding again I decided to give it a try. Mentally I have been paralyzed with fear thinking it was going to be impossible to achieve. This Saturday morning after dusting off my Trek Madone 5.2 Discovery Channel version road bike, in preparation for a short spin, I stood there looking at the stunning blue shining carbon-fiber steed. “Wow! That sure looks like a nice ride”, I say to myself.

Once I rubbed the sparkles from my eyes it was time to suit up. Cycling shoes, helmet, jersey, and the dreaded cycling shorts. Ahhh, the shorts, there they were hanging in the closet. Black, padded, and uncompromising from what I remember. It was time to squeeze myself into them, or so I thought. Both legs in and up they go until they stopped cruelly.
Mercilessly I tugged and yanked until they were on. Ohh the pain, the agony of something that used to fit? I took a quick look in the mirror and was mortified. There it was 25lbs of pork fat jammed into a 5 lb casing, it was not a pretty sight. I could hear the Hillshire Farms commercial in the background…. GO MEAT!!!!

The humility aside it was time to hit the asphalt. I donned my cooling vest, Froggy wet towel and knee brace then guardedly walked the “blue streak” to the road. Daisy watching me with anticipation of a walk, but no, this was my event. After my adjustments compensating for the lack of feeling in my left leg and foot were made to my pedal clips, it was time. My left foot already clipped in I push off and straddle the bike. A few tense moments of balance issues later I was rolling. Now fully clipped and peddling slowly it was all coming back to me. It was just like the catch phrase “it’s just like riding a bike”.
I was doing it!! I was doing it, Ye-haw I can still do the things that I like.

Very quickly another unyielding sensation became very apparent. The seat or what cyclists call the “saddle”. Very small and never in the right area was now intruding into my “man Junk” and areas south. Again, not an appealing sensation however all a part of the game. I was struggling at first but fortunately for me my left butt cheek and central area are numb so it was easily manageable. I was “Back in the Saddle again”.

I headed for the end of my road with what I am sure was the biggest smile on my face that anyone could ever have. Feeling like I was flying at warp speed with the wind blowing in my face I check my progress by looking at the speedometer. What an emotional high I was on until that glance at my Speedo that read 9 mph. Ughhh I thought, is that it? Well at least I was on the road, not fast, not pretty, but on the path to a brighter day. I peddled to the main road and made a right turn towards the “Dead end” sign. As I passes the sign I could only say to myself its not a dead end for me!!! It’s an open road for me to choose how far I want to travel.

Reaching the turn around point I execute a flawless maneuver and headed the other direction. I am on the road to recovery, keep going, don’t let yourself quit, I listen to the voices in my head and keep pedaling. As I pedal I feel my legs speaking a language of their own. “Fire, fire, were on fire,” they scream. Relentlessly I push on to the end of the main road where I try to extinguish the fire by stopping and taking a drink in hopes of squelching the burn.

Personal “SAG” stop over and legs still smoldering its time to trek back to the house. I travel homeward bound reveling in my own joy about something so simple as a short bike ride. Each stroke of the pedal pushed me inch by inch onward. The cadence was enjoyable though be it not as fast as my heart rate. I was traveling the road alone.

Only three miles under my belt final destination ahead I ponder the ramifications of my excursion. How will I feel tomorrow? How are my legs and arms going to be? The gate is ahead and I slow to a halt. Dismounting then rapidly realizing my legs are now like two tree stumps. Hard and unyielding to movement I don’t panic but take my time and shuffle my way to the house. Disrobe and slide into the cooling waters of the swimming pool for stretch and cool down time. It was not far but it might as well have been a century ride. I made it my first attempt of climbing out of the well of hopelessness!!!

Derek

"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever." — Lance Armstrong (It's Not About the Bike: My Journey Back to Life)

SIGNS

With my heart clear of my own transgressions from my past I feel the ability to move forward with the clear-cut challenges I face now. My physical resources being stripped from me I am in a hurried pace to catch up with my intellectual abilities. For a long time I have been known as Derek “the Mr. fix it guy”. I could do anything mechanical, repair something broken, build it from scratch, and make dreams come true. These things came very natural and with ease. I thank the gift from my father; work hard, do it right and revel in the fact that “YOU” did it. No longer able to do the same tasks I do not feel like I have a purpose and that I am defined as a man of no value any longer.

Things of the physical nature coming so easily to me my new challenges popping up now make it feel like I have entered the worst game of chess in my life. Every time life makes a move I have to analyze it and come up with a way to counteract it. Working on a counter strategy has become very difficult with so many variables that I cannot foresee. Let alone that I must face them alone. My friends close and far have been instrumental in helping with everything.

The only thing that they cannot help with is the loneliness that is overpowering. Unfortunately loneliness seems to hold hands with depression, as they are powerful allies.

Fortunately God sends signs my way just when I need them the most. Just this previous Thursday a friend from my past that I have not spoken to in many years called me. Our long phone conversation filled him in on my status. We discussed many things including the fact that his girlfriend of three years has MS of which she was diagnosed 13 years prior. He asked if it would be all right if they visited. I was very exited to re-connect and ask many question to someone that is afflicted with the same disease.

Friday afternoon arrived and so did my old friend with his new girlfriend. Not knowing what to expect as they knocked at the door, I was nervous to meet her. Introducing me he said, “I would like you to meet Amy”. Her chiseled face, perfect teeth, dark hair, and soft complexion mesmerized me. She was beautiful. As the cordials of not seeing someone for such a long time passed my focus was on speaking with Amy to ask unanswered questions about MS and her journey.

We discussed her trials and pitfalls for hours. It was a moving experience for me to sit in my house with someone I had so much in common with. It felt very comfortable. I was not afraid to ask personal questions and she seemed more than happy to oblige any answer. We laughed, we cried, and had an overall great conversation. I was under the impression that no one could love me now that I am damaged goods but she proved that there is hope after all. I am still the same funny guy as I always was.

The following day I was scheduled for my nurse to come and give me my IV of Solu-medrol. Amy’s kindness overwhelmed me, without hesitation she asked if she could visit with me after it was complete because she knew how ill it and my chemo medicine would make me feel. “It’s not good to be alone” she stated sympathetically.

The next day after my infusion was complete Amy brought three gallons of drinking water and several liters of mixed cranberry juices as she informed me I need to drink as much as I could it would help. She even brought a ham, cheese and cracker tray to eat while we sat and discussed her experience. Another sign that I was going to be OK.

My discussion of my marriage came up with my friend and he reassured me my self-esteem would return after my tragic experience. Knowing the kind of person I am he told me, “A man is not defined by what he does in front of people, its’ what he does when people are not looking that matters.” And reassured me that people that really know me would always be there to help no matter what happens.

God, thanks for the sign!!!

Derek Lee