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.”
Saturday, December 19, 2009
Monday, November 9, 2009
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
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
Thursday, September 17, 2009
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.”
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.”
Saturday, August 29, 2009
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)
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)
Sunday, August 23, 2009
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
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
Wednesday, August 19, 2009
MAKING PEACE
My trip to NY went well as seeing the family, cousins, and old friends was comforting to me. My mothers’ wedding was very modest with mostly family and a few friends attended in the small chapel just on the outskirts of town. I was asked to walk her down the isle to give her away to her new soon to be companion.
As the day approached I had uncertainties of being able to walk down the isle to present my mother to another man. While my reasons for apprehension were totally mine I could not explain them in words to anyone. Although she had been dating him for over 16 years I still felt that something was not right. Would I have the strenght and stamina to walk it with her?
The day arrived and all were seated in the chapel. It was now my time to be strong for her and myself. Music playing in the background we proceded our wedding march towards the reverend and all in attendance that were about to bare witness.
While walking my mother held my arm as we made our slow approach to the alter, she gripped me very tight as my walk had become very weak. “Could anyone see? Could they tell how weak I am?” I thought as we passed by so many. I did not want to let my mother down on “her” day. I could feel her help stable me as I started to lose my balance during the last few paces. Just like I was a child learning to walk for the first time there she was to hold me up and steady me. Her eyes saying everything “it’s all right son I am here for you”.
The ceremony proceeded and before I new it the question was asked, “who gives this woman to be wed?" Glancing at my sister Brandee, standing for mother’s maid of honor, with the look of disbelief that mom was going to marry another man. She smiled and I knew that my response had to be “our family” because she was just a part of our mother as I. Reaching for the grooms hand to place into my mothers I gripped it firmly to stand strong and place it into my mothers awaiting palm. At that moment my heart felt pain. Not because I didn’t want my mother to re-marry, but the feeling of loss for my father. It was like he had just died all over again.
The sensation of loss still in my heart the wedding was over. My aunt and I departed for the reception hall I asked if it would be all right if she would stop by the cemetery where my father was. I told her I needed to see the place where he was buried, as the last time I was there; there was snow and no headstone. She agreed. Driving thru the burial grounds she asked “are you sure I want to do this”. I replied despondently “yes I need to.”
We rounded the corner as aunt “Winnie” pointed out his headstone. Stopping to let me out I walked to face the writing and was taken aback by the color of the granite. It was a beautiful salmon color with speckles that glistened in the sun that was directly behind me shining onto the engraved face that read (Sanford “Sandy” L. Nickerson May 14, 1944 – Feb 29, 2008) with the Masons symbol embossed on the bottom. Being very careful not to disrespect him I stood to the side as I made my peace with my father. I let the things from my past go and felt the washing of healing flood my soul.
Looking to the car to see if my aunt was coming to stand with me I saw her sitting there crying as I new she too respected my time and what I must be doing. The sun was setting. Looking down my silhouette now covered the headstone, as I gazed at his name I realized that I now shadowed him. I did not want to appear weak and fragile while I stood hoping that he would be proud of me. Today MS does not have me!!!
At my father’s funeral the pastor spoke about our lives having more meaning than the dash ( - ) between the day we are born and the day we die. The lives we impact and friends we make along the way make up the dash. I hope I have a long dash between mine.
Thanks friends for letting me share my moments with you.
Derek Lee
“You can close your eyes to what you don’t want to see, but you can’t close your heart to what you don’t want to feel!” Aunt “Fred’s” bench.
As the day approached I had uncertainties of being able to walk down the isle to present my mother to another man. While my reasons for apprehension were totally mine I could not explain them in words to anyone. Although she had been dating him for over 16 years I still felt that something was not right. Would I have the strenght and stamina to walk it with her?
The day arrived and all were seated in the chapel. It was now my time to be strong for her and myself. Music playing in the background we proceded our wedding march towards the reverend and all in attendance that were about to bare witness.
While walking my mother held my arm as we made our slow approach to the alter, she gripped me very tight as my walk had become very weak. “Could anyone see? Could they tell how weak I am?” I thought as we passed by so many. I did not want to let my mother down on “her” day. I could feel her help stable me as I started to lose my balance during the last few paces. Just like I was a child learning to walk for the first time there she was to hold me up and steady me. Her eyes saying everything “it’s all right son I am here for you”.
The ceremony proceeded and before I new it the question was asked, “who gives this woman to be wed?" Glancing at my sister Brandee, standing for mother’s maid of honor, with the look of disbelief that mom was going to marry another man. She smiled and I knew that my response had to be “our family” because she was just a part of our mother as I. Reaching for the grooms hand to place into my mothers I gripped it firmly to stand strong and place it into my mothers awaiting palm. At that moment my heart felt pain. Not because I didn’t want my mother to re-marry, but the feeling of loss for my father. It was like he had just died all over again.
The sensation of loss still in my heart the wedding was over. My aunt and I departed for the reception hall I asked if it would be all right if she would stop by the cemetery where my father was. I told her I needed to see the place where he was buried, as the last time I was there; there was snow and no headstone. She agreed. Driving thru the burial grounds she asked “are you sure I want to do this”. I replied despondently “yes I need to.”
We rounded the corner as aunt “Winnie” pointed out his headstone. Stopping to let me out I walked to face the writing and was taken aback by the color of the granite. It was a beautiful salmon color with speckles that glistened in the sun that was directly behind me shining onto the engraved face that read (Sanford “Sandy” L. Nickerson May 14, 1944 – Feb 29, 2008) with the Masons symbol embossed on the bottom. Being very careful not to disrespect him I stood to the side as I made my peace with my father. I let the things from my past go and felt the washing of healing flood my soul.
Looking to the car to see if my aunt was coming to stand with me I saw her sitting there crying as I new she too respected my time and what I must be doing. The sun was setting. Looking down my silhouette now covered the headstone, as I gazed at his name I realized that I now shadowed him. I did not want to appear weak and fragile while I stood hoping that he would be proud of me. Today MS does not have me!!!
At my father’s funeral the pastor spoke about our lives having more meaning than the dash ( - ) between the day we are born and the day we die. The lives we impact and friends we make along the way make up the dash. I hope I have a long dash between mine.
Thanks friends for letting me share my moments with you.
Derek Lee
“You can close your eyes to what you don’t want to see, but you can’t close your heart to what you don’t want to feel!” Aunt “Fred’s” bench.
Wednesday, August 12, 2009
DENTED CAN
Have you ever felt as though your life is out of control an you are careening down a winding road with no brakes and your ability of stopping is beyond comprehension? That seems to be the road I am traveling. Many things are out of my control and I do not have the physical strength to mash my foot on the brakes and make it come to a screeching halt.
As I wind down the road of uncertainty my health goes with it just as fast. Struggling over obstacle after obstacle it seem as though I can not catch a break. I have been very fortunate not to experience physical pain until lately. The past several weeks I have developed excruciating pain in my abdomen, groin, and left leg. On top of that I feel like I am always drunk and lose my balance quite easily. While traveling back to NY for my mothers wedding I decided to see Dr. Latif my neurologist that diagnosed me with MS.
My wonderful sister took it again upon herself to get me to his office and sit thru the exam. As Dr Latif asks the question “so…Derek how are we doing today?” the details surface. Listening to everything going on he suggests that the Betaseron may not be working and we might want to think about changing to another medicine. However before we do he is putting me on a short term low-dose of chemotherapy medicine to lower my immune system even more to see if that will boost the effectiveness of the Betaseron interferon. He also prescribes another medicine that should help with my dizziness. I hope!!!!
For the abdomen and leg pain he recommends I see the doctor my sister works for, so the visit is scheduled later this week. We will see how it goes.
Not in the best of spirits I stop at the drugstore to pick up the new meds. Dropping off the prescriptions for yet more medication I peruse the local Walgreens. Killing time I pass by a cart full of discounted items. I notice that the majority of things are dented cans of various items. Oddly enough I pick a can of corned beef hash that was severely dented and could not put it down. I read the ingredients over and over and had flashbacks of making breakfast hashers with scrambled eggs, cheese and gravy over top.
As I stood there I could not help but remember the smell of it cooking and the joyous flavor at the first bite. I slowly placed the can back with the others as I thought how the dented can mirrored my life. All it took was one dent in my life to be tossed aside and put in the discount bin for all to pass. Read the ingredients of my life, I still have a lot of good stuff inside but because of a flaw I just don’t seem to be the same.
Look past the dents in life, take the time to read the ingredients, you will never know how good things are if you don’t.
Derek Lee
As I wind down the road of uncertainty my health goes with it just as fast. Struggling over obstacle after obstacle it seem as though I can not catch a break. I have been very fortunate not to experience physical pain until lately. The past several weeks I have developed excruciating pain in my abdomen, groin, and left leg. On top of that I feel like I am always drunk and lose my balance quite easily. While traveling back to NY for my mothers wedding I decided to see Dr. Latif my neurologist that diagnosed me with MS.
My wonderful sister took it again upon herself to get me to his office and sit thru the exam. As Dr Latif asks the question “so…Derek how are we doing today?” the details surface. Listening to everything going on he suggests that the Betaseron may not be working and we might want to think about changing to another medicine. However before we do he is putting me on a short term low-dose of chemotherapy medicine to lower my immune system even more to see if that will boost the effectiveness of the Betaseron interferon. He also prescribes another medicine that should help with my dizziness. I hope!!!!
For the abdomen and leg pain he recommends I see the doctor my sister works for, so the visit is scheduled later this week. We will see how it goes.
Not in the best of spirits I stop at the drugstore to pick up the new meds. Dropping off the prescriptions for yet more medication I peruse the local Walgreens. Killing time I pass by a cart full of discounted items. I notice that the majority of things are dented cans of various items. Oddly enough I pick a can of corned beef hash that was severely dented and could not put it down. I read the ingredients over and over and had flashbacks of making breakfast hashers with scrambled eggs, cheese and gravy over top.
As I stood there I could not help but remember the smell of it cooking and the joyous flavor at the first bite. I slowly placed the can back with the others as I thought how the dented can mirrored my life. All it took was one dent in my life to be tossed aside and put in the discount bin for all to pass. Read the ingredients of my life, I still have a lot of good stuff inside but because of a flaw I just don’t seem to be the same.
Look past the dents in life, take the time to read the ingredients, you will never know how good things are if you don’t.
Derek Lee
Friday, July 31, 2009
Demons Within
Adversity is the defining moment of someone’s true being. The things that are done and said during those times tell the truth of what a person is really like. Finding that troubling times are shaking me to the core I must rely on what I have left that is important to help me stand strong.
My neighbor and friend Charlie stopped by last week to check on me and see if I needed anything for the house. After speaking in quite some depth the topic of my MRI slides came up. He works for GE installing and maintaining MRI machines throughout the southeast and was wondering if I had a copy of my images. I replied “Yes I do” however I have never looked at them in detail as I felt sick every time I tried. Charlie being the intellect said “go get em” I’ll show you, you have nothing to fear.
Booting up my laptop he sat next to me on the floor in the living room as he proceeded to open the MRI reports. I was apprehensive at first because the last time I viewed them was at Dr. Goodmans office in Rochester NY. My family were the only ones in the room as the doctor tried to explain the significant findings and what they meant. I looked away as the Dr. Goodman tried to describe what he saw as the bitter taste of reality was setting in for me. I tried listening as he continued with his description but all I could hear was a loud ring of “you have MS!!!”.
Feeling more comfortable on the floor at home with Charlie than in the hospital environment I was able to listen clearly as he move thru the images.
Charlie very calmly showed the slices of my brain teaching me about each different part and its function. He continued the journey one slide at a time until he paused for a moment, studied it and said coldly “ well Derek, there it is”. In black and white there it was, my Demon, spots on my brain that should not be there. I was not afraid this time because I knew my demons’ name. “MS”
Understanding the only good thing I can define is the demon of physical pain since I have a picture and a name, however, my emotional ones remain.
Trying to understand myself as an individual I have been very fortunate to speak with counselors and family members to figure out what about my past has molded me into the human being I am today. Discovering many things good and bad I recognize that things that happen as children directly impact us as an adult. Comments made then can scar for a lifetime. My father was very physically abusive towards me while I was a child and I harbored ill will towards him until he recently passed away.
While my aunt Winifred (my fathers sister) visited me last week she answered questions about my dad that made me understand what he did to me and why. He unfortunately was caught in the viscous family cycle of pain himself passed down from his own father to him and his two brothers. They carried the pain and were never able to release it. My point is I know who I am and the emotional demons that followed him still reside in me. The difference is I recognise and understand what I need to do to release them so I can move on to be a better person. There are people that I love that have emotional demons they cannot part with.
Forgive the transgressions of your past and let the demons go, Your life will be fufilled with happiness and true friendship.
Derek Lee
My neighbor and friend Charlie stopped by last week to check on me and see if I needed anything for the house. After speaking in quite some depth the topic of my MRI slides came up. He works for GE installing and maintaining MRI machines throughout the southeast and was wondering if I had a copy of my images. I replied “Yes I do” however I have never looked at them in detail as I felt sick every time I tried. Charlie being the intellect said “go get em” I’ll show you, you have nothing to fear.
Booting up my laptop he sat next to me on the floor in the living room as he proceeded to open the MRI reports. I was apprehensive at first because the last time I viewed them was at Dr. Goodmans office in Rochester NY. My family were the only ones in the room as the doctor tried to explain the significant findings and what they meant. I looked away as the Dr. Goodman tried to describe what he saw as the bitter taste of reality was setting in for me. I tried listening as he continued with his description but all I could hear was a loud ring of “you have MS!!!”.
Feeling more comfortable on the floor at home with Charlie than in the hospital environment I was able to listen clearly as he move thru the images.
Charlie very calmly showed the slices of my brain teaching me about each different part and its function. He continued the journey one slide at a time until he paused for a moment, studied it and said coldly “ well Derek, there it is”. In black and white there it was, my Demon, spots on my brain that should not be there. I was not afraid this time because I knew my demons’ name. “MS”
Understanding the only good thing I can define is the demon of physical pain since I have a picture and a name, however, my emotional ones remain.
Trying to understand myself as an individual I have been very fortunate to speak with counselors and family members to figure out what about my past has molded me into the human being I am today. Discovering many things good and bad I recognize that things that happen as children directly impact us as an adult. Comments made then can scar for a lifetime. My father was very physically abusive towards me while I was a child and I harbored ill will towards him until he recently passed away.
While my aunt Winifred (my fathers sister) visited me last week she answered questions about my dad that made me understand what he did to me and why. He unfortunately was caught in the viscous family cycle of pain himself passed down from his own father to him and his two brothers. They carried the pain and were never able to release it. My point is I know who I am and the emotional demons that followed him still reside in me. The difference is I recognise and understand what I need to do to release them so I can move on to be a better person. There are people that I love that have emotional demons they cannot part with.
Forgive the transgressions of your past and let the demons go, Your life will be fufilled with happiness and true friendship.
Derek Lee
Sunday, July 26, 2009
CLIMBING THE MOUNTAIN
Thank you, thank you, thank you….. To all my true friends, family and loved ones. I have been to the presuppose of darkness and pushed over the edge by things of which I have no control over. Not unlike the musician that leaps from the stage at a concert into a sea of hands that hold them up, all of you stood your ground and refused to let me down. You shuttled me raised up to the bottom of the mountain and yelled climb!!! The touch, phone calls, e-mails, personal conversations lifted my spirits and showed me that I have imparted a small part of humanity in all of you thru friendship.
The importance of true friendship shines thru all, even thru the worst of what others do to you. Not one of you floundered and abandoned friendships or love and proved it by communicating during my time of pain. You have also shown that filling your life with superficial friends leaves you always looking for something to fill a huge void. I know that letting others judge you is not what I want and realize the greater value in being you. My past blog I made quote about surrounding oneself with friends and expecting nothing in return. I did not truly understand the importance until now.
Hit hard from a touching email from my former co-worker and friend Bruno Lucidarme at Hard Rock Tool. I saw him reach out to all of you in support of me in my time of need and understood then that people have compassion and that is what people that really care do for non-superficial friendships. They do it because they have character, honor, and integrity. He climbs mountains all thru California and the west coast states and chronicles his adventures with photos and personal journals of each and every climb so he can look back in time and have something to cherish and remember. A post he made in his journal about me as he climbed the mountain struck me. http://s43.photobucket.com/albums/e378/luciano136/Other%20-%20Hikes-Mountains/CA%20-%20White%20Mtn%20Peak%20-%20Jul%2019th%202009/ Bruno could have easily gotten lost in the expansive view and the vastness of beauty. He took the time to think about me and my journey instead of his own as he paid tribute to me instead. I am glad to be a part of his legacy forever in writing, photo, and memory. Thank you Bruno, keep sending the photos.
I told someone that I loved I had nothing else to offer the world and the only thing I would leave behind as my legacy was my house that I worked so hard to complete. She misunderstood me, I was wrong. As beautiful as it may be, brick, mortar, four walls and a roof do not define me. I completed my dreams and did my best to fulfill another’s to no avail. My legacy are the stories that I have with all of you. The ones that are untold and new memories yet to be made. I have the spirit of conviction knowing that those of you that have know me and my plight for many years are aware of the truth.
I am not seeking happiness like others because I have already found it in myself. Having the opportunity to speak with counselors to help understand the desire to please someone else my eyes can see clearly that unless someone else is willing to accept help and let their guard down to let someone into their heart there is nothing you can do for them.
Rest assure, with friends like you, I will never turn my back and run from adversity when times are toughest. Thanks for holding me high and helping me see thru the darkness of what is being done. I make a promise to all that know the truth. I will not give up. I’ll fight until the end. I am a man of honor, compassion, and truth. I don’t break promises.
By the way….. Thanks everybody that helped to “slap the rose colored beer goggles of love off my face!”
Keep a watchful eye for my next Blogs!!!!!! To the almost one hundred friends, family and strangers that have spoken to me, Thank you.
Derek
Thursday, July 9, 2009
LEFT IN PAIN
Here is the beginning of the end for me. My world has been changed again for the worse. If any of you have not heard Roxanne has left me and moved out. The house will be up for sale and my dreams are being flushed away. Regrettably I am not dealing with this very well and have done what I can to keep my sanity by reaching out to as many of my friends and family as I could. This will be the last time I try to mend my broken heart by asking for anyone’s help. I have burdened many of you with my pain and it does not seem to be relieving any of what I feel. I am devoid of any other words to explain how afull this feels.
I have tried to speak to Roxanne to find answers but it is excruciatingly painful as she has moved on emotionally. The conversations end up with me distraught trying to understand the reasons for the decision. I am left feeling as though it is my entire fault for not listening to what she needed. I thought that I was a good person by letting Roxanne be herself and not trying to not and change her. She had controlled me and I let it happen to make thing easier on both of us "not" because I didn't want responsibility. I did not think I was a weak person by doing that however, it has been brought to my attention that I was wrong because that is something that shows weakness which is not a very desirable trait. My life is not some Sex in the City episode, its real life with no story book ending.
I understand that people change over time but I thought you worked things out when times got tough and molded relationships as time progressed. No one is the same person they were twenty years ago but you accept subtle changes as a part of them and work on the things that you do not like to make yourself a better person and keep the relationship alive. That is what I have always done trying to never hurt anyone.
I thought MS was the worst thing that could happen to me, and that time would help me deal with it. Knowing that someone would be there to help thru the strugles of MS was very comforting. Boy was I ever wrong. I was well on my way to taking charge of my life again just to have my foundation shattered. Physically I am worse off now than I was before I was diagnosed. Why me?, Why now?, What did I do wrong to deserve this?. These questions run over and over in my head every day. There are no answers.
I know that as with many marriages my life with Roxanne has had its ups and downs for sure but there were lots of good times too. I have enjoyed sharing my life with her and enjoyed making our dreams come true. It is very hurtful to me to see them all wasting away to a distant memory. I am not a callus person and find it hard to act like this is no big deal. My heart is torn from me and is crushed by what is happening. I could never turn away from someone in need no matter what.
I am sick and tired of feeling sick and tired all the time! I have been told I complain too much about my health, Roxanne, I apologize. My Sister tried to make me realize that it is OK to tell someone how you feel and that is alright to share your pain and grief with people that really and truly care and love you! I do not want to be a burden to anyone.
My good friend Ty Egeseth has flown me to my sister’s house in NY to try and help me. He has come to my aid trying to help with no expectations for anything in return, just my friendship. Soon I will be traveling back to Orlando to try and piece my life together. Having so many uncertainties in my life is killing me! I hope that he and all that have tried to help me know how much it means to me to have wonderful friends. My life has been changed by all of you and I hope you will accept my gratitude. My wish is that you think of me as a funny, caring, loving person forever. For anyone that I have inadvertently harmed or done wrong please accept my apologies and forgive me.
Forgive me God for all my sins.
From the bottom of my heart,
I have tried to speak to Roxanne to find answers but it is excruciatingly painful as she has moved on emotionally. The conversations end up with me distraught trying to understand the reasons for the decision. I am left feeling as though it is my entire fault for not listening to what she needed. I thought that I was a good person by letting Roxanne be herself and not trying to not and change her. She had controlled me and I let it happen to make thing easier on both of us "not" because I didn't want responsibility. I did not think I was a weak person by doing that however, it has been brought to my attention that I was wrong because that is something that shows weakness which is not a very desirable trait. My life is not some Sex in the City episode, its real life with no story book ending.
I understand that people change over time but I thought you worked things out when times got tough and molded relationships as time progressed. No one is the same person they were twenty years ago but you accept subtle changes as a part of them and work on the things that you do not like to make yourself a better person and keep the relationship alive. That is what I have always done trying to never hurt anyone.
I thought MS was the worst thing that could happen to me, and that time would help me deal with it. Knowing that someone would be there to help thru the strugles of MS was very comforting. Boy was I ever wrong. I was well on my way to taking charge of my life again just to have my foundation shattered. Physically I am worse off now than I was before I was diagnosed. Why me?, Why now?, What did I do wrong to deserve this?. These questions run over and over in my head every day. There are no answers.
I know that as with many marriages my life with Roxanne has had its ups and downs for sure but there were lots of good times too. I have enjoyed sharing my life with her and enjoyed making our dreams come true. It is very hurtful to me to see them all wasting away to a distant memory. I am not a callus person and find it hard to act like this is no big deal. My heart is torn from me and is crushed by what is happening. I could never turn away from someone in need no matter what.
I am sick and tired of feeling sick and tired all the time! I have been told I complain too much about my health, Roxanne, I apologize. My Sister tried to make me realize that it is OK to tell someone how you feel and that is alright to share your pain and grief with people that really and truly care and love you! I do not want to be a burden to anyone.
My good friend Ty Egeseth has flown me to my sister’s house in NY to try and help me. He has come to my aid trying to help with no expectations for anything in return, just my friendship. Soon I will be traveling back to Orlando to try and piece my life together. Having so many uncertainties in my life is killing me! I hope that he and all that have tried to help me know how much it means to me to have wonderful friends. My life has been changed by all of you and I hope you will accept my gratitude. My wish is that you think of me as a funny, caring, loving person forever. For anyone that I have inadvertently harmed or done wrong please accept my apologies and forgive me.
Forgive me God for all my sins.
From the bottom of my heart,
Love
Derek Lee
Roxanne you win.....I am sorry
Tuesday, May 19, 2009
HUMBLED!
Now I have several weeks of “Man stuff” under my belt (no pun intended) I am starting to feel a little more normal. Blood test at the end of the month should confirm my testosterone levels. I think I might be a man again, not sure yet but the new hair growth and acne might be a good sign. Could the cravings for McDonalds fries be an indicator I am going thru puberty again?
The MS 150 http://bikeflc.nationalmssociety.org/site/PageServer?pagename=BIKE_FLC_homepage was completed this weekend and I had the privilege of attending the awards ceremony in addition to the banquet dinner half way thru the ride here in Orlando. My congratulations to the 1200 riders of the event. I was very fortunate to have received a dinner ticket from Roxanne’s team leader at Lockheed.
As I sit at the beautifully set table of Roxanne and my friends I became acutely aware of the commitment that they had to the ride and the cause. Knowing that they had another full day of miles and miles of hills their suffering would not be in vain. I wished I could ride along with them to be just like old times, laughing, sweating, and yes in pain. The thought of sitting and not riding was disheartening for me as I felt out of place almost like the third wheel.
The banquet food was quite pleasant and the company was even better. Just as soon as the libations were done the awards ceremony portion began with awards going to top fund raising teams. There were individuals that raised phenomenal sums in the $20-50,000 range, impressive by any standards. Roxanne was asked to stand as an individual in the category of individuals that raised over $1,000. Clapping with everyone else because I was so proud of her for doing so well I was awestruck at the achievements of the all the riders. While standing she said that she could have never done it without me. I would like to say that I wish it were not because of me…its MS and people that have it much worse than I.
The awards approaching a close the lights were dimmed in the hall and silence was asked for. On each table there were Red glow sticks that we were told to hang on to. The reason for the MS150 was about to be remembered. People with MS in were asked to stand and illuminate a glow stick. In a surreal moment I was ashamed at first as I rose slowly thinking I might be the only one. I looked around as I snapped my stick and saw 5-6 others in the room of over 1,200 some of which were riders in the event. It was asked for spouses, loved ones, and family members that have been touched by MS stand. Roxanne arose and illuminated hers as she stood by my side. Next for anyone with friends to do the same. My table stood and all our friends broke their sticks. I looked at each one of my them and was glad the lights were low so they could not see the tears in my eyes. I was humbled and extremely moved by the whole experience. Thank you friends; Tom, Mike, Mike O, Cathy, Rebecca, Tracie you give me strength! Especially you Tracie.
Testing my theory of McDonalds fries I had quite the experience a few weeks back at one. I was standing in line after a visit to the doctors getting to order from the dollar menu when someone tapped my shoulder. I turned to see a small disheveled weathered man holding one dollar in his hand. He very politely asked if I could spare 7 cents to pay the tax on what he was about to order. I informed him that I only had a five-dollar bill but if he could wait I would gladly give him the change he needed. He graciously agreed and told me that everyone else in line ignored him.
As we approached the counter I asked him to stand by my side and place his order first as I would like to pay for it. He was shocked and asked if he could order a one-dollar burger and a hot fudge Sunday. I was happy to oblige and told him to order whatever he wanted. He reached out his hand and embraced mine with a fragile and trembling squeeze.
Our orders filled I asked if he would join me for lunch and sit at my table. I led the way to a comfortable booth that we could sit at. We exchanged greetings and began to eat. While talking I learned of his past and what led him to his current state of life. He informed me of the alcohol abuse that led to his troubles and the loss of his wife of over 45 years. With tears in his eyes he pulled out his wallet and showed me pictures of him standing next to his wife when he was in the army. She was quite attractive and you could tell he was deeply in love with her and missed her terribly.
It was hard to listen to his life’s story without feeling his pain and suffering. Medically he was not a well man however his only concern was for his friends. He asked if it was all right if he could save the other half of his burger to give his friend that was back at his camp. I could only watch as he wrapped the half eaten burger and feel bad for eating all of mine.
Our meals finished he reached out once again to say thank you and ask a very odd question, “Do you believe in God?” I looked in his eyes of pain and Replied “yes I do, why?” He told me I was an angel sent to him to lift his spirits and restore confidence that things were all right. I was overflowing with emotion and felt sick to my stomach at that moment. I felt as though he was mistaken he was here to assure me that things would be OK and I need no more pain.
Life’s chance meetings happen for a reason, I met all my friends for a reason! Thanks for being my friends.
Derek Lee
Wednesday, April 22, 2009
MAN BOOST !!!
Finger update: It has healed nicely and has been doing a great job with the many daily tasks it is required to do. The nose picking still needs a little work but I think that is due to operator error more than the mechanical issue of the healing process.
My steroid treatment is now complete. There was no fun in that at all I must tell you, it made me sicker feeling than before but that was to be expected. My follow up visit with my Neurologist was very interesting. It seems that the steroid had no major benefit this time and that we will not most likely do the follow up Prednisone protocol should I ever need the infusion steroid in the future. Thank goodness because that stuff made me feel like death was looming over me.
Feeling like crap aside the other bit of news we discus was about my blood work. He informs me that my test results show that my Testosterone level is exceptionally low called "hypogonadism". The recommended range is between 240-850 (ng/dl) in an adult male my age. My level is at 105 (ng/dl). Not sure why this is at this stage so he suggests I see a Urologist to find out why it has dropped so low. So you guessed it, another doctor to see....super!! :-<
The appointment is scheduled for the following day.
Urology is a very interesting thing I soon find out. More than just the inner workings of the body's ability to cleans the body toxins but also the role it has in hormone production. My visit starts out very well with Dr. Kessel as he teaches me about the physiological correlation between the hypothalamus, pituitary, adrenal glands, and testis. He informs me of how they must all communicate in order for the male to produce testosterone. With little or no stimulation to the testicles the hypothalamus does not create a demand for testosterone thus decreasing the overall level in the male body. This in turn wreaks havoc on other organs that require the hormone for their healthy function. The low hormone level changes the serotonin levels in the brain and affects memory which creates a chemical imbalance in the brain. Also, the low levels of testosterone make the pituitary slow down creating low energy level, muscle weakness, muscle loss, digestive issues, and increased cortisol that deposits in the mid section of the mans body.
My biology 101 class was going well until he says "Drop your shorts its exam time". What seemed like a very thorough inspection of my Junk and the words Yup' looks OK to me I had a sigh of relief. Then it was lean over the table for more fun. With the SNAP !!! of a latex glove and flashes of Broke Back mountain, I could only drift into my happy place for inner solace.
The good times over Dr. Kessel recommends I start testosterone therapy. Several methods are available so I choose the shot as they bring the levels up quickly and they can be maintained with the topical gel Androgel . http://www.androgel.com/aboutandrogel.html
I will be required to have several shots every 3 - 4 days (yes that's what I said more shots) administered at the doctors office to get the levels up to par before I can maintain the levels with the topical gel. The levels should rise very quickly so hopefully my feeling of malaise should lift.
Time for the first injection at the doctors office. I wait in the exam room as the doctor calls in the nurse to administer the testosterone. She asks if I would drop my pants, so I oblige. She seemed shocked and tells me that they did not need to be around my ankles only a cheek was necessary. With all the dignity I could muster I pulled them back up and exposed my right cheek in preparation for my first MAN BOOST injection. I stammered something about the doctor saying testicular stimulation???? Hmmm. Nope just a shot in the ass. So I figured no big deal I'm a pro at shots by now and took it like a man with low testosterone and whined about the pain.
All the fun aside there does seem to be a correlation between MS and testosterone levels in men. This is a great article about a study being done at UCLA and sponsored by the national MS society.
I would like to thank two friends and let them know how much their friendship means to me. Curtis has been driving me to my doctors for my appointments and has come to my aid with help around the house and fixing one of our rentals that needed repair. He really has shown his best side to help when I need it.
My other is Bill Justice, He spent all weekend with me just because he is my best friend and wanted to hang out for some guy time. We were in each others weddings and I think of him as a brother. We had a great time and used the BBN therapy to help my testosterone level. Beer-Barbecue-Nascar
Thanks guys for everything!!!!!
Tuesday, April 7, 2009
SECOND SHOT HEARD AROUND FLORIDA!!!!
For details read the end of the story!!!!Hello Florida,
I am home and sweating like crazy. I made it on the flight alright, it was a very uneventful trip home. No turbulence or air sickness to be had. The only feeling of trepidation was wondering how things would be after arriving and seeing my friends for the first time in months. Would there be questions I could not answer? Fear of not knowing what to say to someone about what my next plans are? Or the dreaded question from everyone " How are you feeling Derek?".
I can certainly say that so far all my fears have been laid to rest. My friends have been wonderful. No questions unanswered of awkward. At least for me. My plans are to get back to my normal life ASAP and start feeling better. My first thing to do was to lay my foundation for medical resources as quick as possible in order to take the uncertain off my plate so I can relax if something arises. Nothing like being prepared, Right?
My new Doctor is Dr.Rosenburg, he is a neurologist that was referred to me by the MS center here in Florida and "ONLY" sees patients with MS an has been treating them for over twenty years. His office is right across the street from Universal studios so not a bad trip for me. I must say the visit with him and his nurse practitioner was great. I feel I will be in great hands here.
I was having some issues with my right foot and arm after I arrived so Dr. Rosenburg started me on a 3 day intravenous steroid to help with the issue. A nurse came to the house and started the IV and stopped by each day until it was finished. Now I need to finish the protocol with a follow up 14 day steroid to finish. It seems to be going well although I am very hungry and Ohhhh so gassy!! Sorry everybody!!!
Anyhow, my very good friend John Mazzone lifted my spirits this week by taking me on a "Man Date". (No Kerry, it was not a Broke Back moment) We went to my favorite cigar bar called Harry's Cigar and Brew. They have a live jazz band play outside and plenty of beer and cigs!!! Ahhh the good life again. What a relaxing time especially being how he put a smile on my face when he picked me up in his Corvette with the top down. Good friends.
Sorry I have not written sooner but I had a little mishap with some weaponry. The day before my visit with John and the cigar bar my neighbors and John were at the house. One thing lead to another and the guns come out for target practice. All was well until it was time to break down and put the munitions away and call it a night. Well during the process I was unloading the smallest hand gun a 22 cal magnum 6 shooter with a break barrel. The pin was removed and I spun the barrel. Keep in mind I am very very safety conscious!!!! The gun was pointed away from me, the house, and everybody else. So as I said I spun the 6 shooter cartridge to make sure each round was spent....BANG!!!!! it fired. I held it in my left hand and felt a searing pain. Holy shit I shot my
#%$#@! finger...... All I saw was a flash of light and felt pressure.
It hurt for a short while and we were all stunned as I stood there with my finger bleeding. Rox thought I was joking, but no it was real. I shot my finger, wow that was stupid I thought. The best part was I made a comment earlier about how it probably was not good to let the guy with MS handle fire arms while on drugs. Ha ha Ha. Not so funny now is it.
My finger is just fine, I can feel with it and with any luck I'll be picking my nose with it as soon as I dig out the last of the gun powder.
Thanks for laughing at me because I know that you all are right now.
Blog you latter with more updates.
Derek
Wednesday, March 25, 2009
The Shot heard around the world!!!!!.......
Beta-Nurse Lisa
With great anticipation I read all of the starter kit literature and learned about Betaseron an its side affects. I thought It was a good fit for my particular form of MS called relapsing remitting, the most common type. However, the thought of being a human pin cushion was not very appealing to me. Reading that I needed shots every 2 days I felt faint. There was no way I can do this.
Inserting the DVD into the player I began to see how the injections are done with the instructional video provided. They had actual people with MS that give themselves shots so you can see proper technique. So I watched over and over until I thought I had it down pat. The manufacturer provides you with your own personal nurse called a Beta-nurse to come to you and train you via hands on for your first shot.
My appointment is made for my Beta-nurse to come to my sisters for my training the next week. After being in NY since January 7, I finally have answers, diagnosis, and am ready to start my treatment. Yea, my mental state of mind has leveled off and I can see clearly what needs to be done. "Take charge of my life again!!!" Is all I can think about now.
First step in gaining it back overcome the fear of needles and giving myself shots. I see other people do it, so can I. Or so I think.
The day finally comes for my nurse to show up for my training. The doorbell rings, with my heart pounding I answer expecting to see a hulking old lady with a white hat and uniform. But no, there was this small very nice younger women with a winter coat that smiled and said "Hi I'm Lisa your Beta-nurse are you Derek?" I reply "why yes, yes I am are you here to make me cry?" We both laughed as we sat down and started to discuss what I learned from the DVD and if I had any other questions.
With the cordials out of the way it was time to get down to business. The medicine comes pre-packaged with the needle and everything you need. All that's required is for you to do is mix it. She shows me how to draw it into the syringe making sure there is no bubbles. Once that is prepped it's shot time. "Hold on!" I told her "I don't like needles, I can't stand them". "No problem" she says and tells me to use the new betaject lite self administering tool that hides the needle. All you do is load it place the end on you skin and press the button.
With two practice loads and pretend shots with the Betajector done its my turn for real. My Sister, nieces, and other family members are in the room watching to cheer me on, its go time. All eyes were fixed on me as I stood and raised my shirt to give my first shot in my abdomen. I prep the area and hold the betaject with my sweaty hands and take a deep breath..... One, two, three press the button and "CLICK" it administers the shot. Counting to 15 to make sure the medicine is injected all the way I pull the needle out and it's done. The nieces cheered and sister clapped for me.
I did it!!! In that one moment I realized that this was real. I have MS and that I was in control of my life again! I know that it is not going to be easy in the long run but it sure is great having family and friends that care about you as much as you all do.
I read a great quote“ Make it a habit to tell people thank you. To express your appreciation, sincerely and without the expectation of anything in return. Truly appreciate those around you, and you'll soon find many others around you. Truly appreciate life, and you'll find that you have more of it.” Thanks to all for being so thoughtful and hopeful during this time for me and Roxanne.
Especially you Sister all my love from your "Big Brother" Derek Lee......
Stay tuned for my trip home friday March 27th.........
Monday, March 23, 2009
In the beginning there was the "BAD" news. Part II
My 2 hour plane ride and visit with Brandee's doctors was a definite step in the right direction. Per their advice my sister once again braved the snow and ice to drive me to see Dr.Latif in Watertown, NY for a new MRI and nerve conduction testing. Those of you not familiar with this test all I can say is never insult a Nazi or he will shock the shit out of you all under the guise of
" You need this done to test your nerves". I will ask any of you if you have ever touched an electric fence or possibly were stupid enough to stick a fork in an electrical socket? Well? Do you remember that?
I lay on the exam table in his office ready for the prodding to begin, my sister by my side for support. Dr. Latif asks "are you ready Derek?" I reply "only if you are!!". He places the probes on strategic areas of my arm to start and.... ZAP! The first jolt makes me jump almost off the table. Then ready for more... ZAP! my arm takes another hit. Ohhhhh man will I make it through this without passing out? I looked over at my sister and saw a look of horror then had to look at the wall so she would not see me tearing up in pain. Enduring shock after shock the doctor finally stopped and said the worst part was over and asked if I was ready for the needles. I laughed and said sure. Problem was he was not joking and proceeded with the needle procedure. I just laid there and tried to go to my "Happy Place".
I will spare you with more pain issues but be sure that needles equal pain. My sister being the consummate nurse she is was fascinated by the test asked lots of questions so she could relay them to me after I became more coherent. Thank god she was able to listen as I just stared at the wall unable to stop from thinking I just crapped myself. Another ewww moment of my life.
Dr. Latif stopped the testing short saying he would like me to have another MRI with a special dye to see more of my brain. Super another scan, but I felt very comfortable as he was very good explaining why he needed it. Off I go for the picture that would hold the true story of what is up.
MRI in hand I return to Dr. Latif's office for my consultation and findings appointment This time he asked me to sit in his office with him. Very cordially he said he did not like what he saw and proceeded to show me the scan on his computer pointing out several areas on my brain that he called lesions. Then the bad news "It's MS Derek, I'm sorry" he states to me. I felt sick to my stomach, with a huge welt starting in my throat I tried my best not to break down. He quickly tried to console me by telling me that my life was not over and that I was not going to die. Sure I thought to myself, that's easier to say than believe.
Sitting there stunned he asked if I would like another opinion and would be happy set it up for me with the MS center in Rochester if I would like. Of course I said yes to make sure. "I do not want to wait, lets do this" I tell him.
One more time my sister to the rescue. A few days later and a 3 hour drive we end up in Rochester to see Dr. Goodman the chief neurologist of the MS center there. This time no shocks or needles just test results. Well, the news did not get better. He concurs with Dr. Latifs findings and recommends I start treatment called DMD (Disease Modification Drug). He tells me several are available and I needed to speak with Dr. Latif to decide which is best for me.
Now I am scared to death and trying to learn as much as I can about the disease and what to expect from the drugs. I had lots of questions that I was hoping Dr.Latif would answer for me. Informing me about the options he recommended the DMD called Betaseron. http://betaseron.com/patients/about_betaseron/what_is_betaseron.jsp
It's an every 2 day shot that is self administered for the rest of my life that will help slow the progression but not stop the disease. I receive an info pack to read and watch a DVD to get started.
The Shot heard around the world!!!!!.......Next blog!!!!!!
" You need this done to test your nerves". I will ask any of you if you have ever touched an electric fence or possibly were stupid enough to stick a fork in an electrical socket? Well? Do you remember that?
I lay on the exam table in his office ready for the prodding to begin, my sister by my side for support. Dr. Latif asks "are you ready Derek?" I reply "only if you are!!". He places the probes on strategic areas of my arm to start and.... ZAP! The first jolt makes me jump almost off the table. Then ready for more... ZAP! my arm takes another hit. Ohhhhh man will I make it through this without passing out? I looked over at my sister and saw a look of horror then had to look at the wall so she would not see me tearing up in pain. Enduring shock after shock the doctor finally stopped and said the worst part was over and asked if I was ready for the needles. I laughed and said sure. Problem was he was not joking and proceeded with the needle procedure. I just laid there and tried to go to my "Happy Place".
I will spare you with more pain issues but be sure that needles equal pain. My sister being the consummate nurse she is was fascinated by the test asked lots of questions so she could relay them to me after I became more coherent. Thank god she was able to listen as I just stared at the wall unable to stop from thinking I just crapped myself. Another ewww moment of my life.
Dr. Latif stopped the testing short saying he would like me to have another MRI with a special dye to see more of my brain. Super another scan, but I felt very comfortable as he was very good explaining why he needed it. Off I go for the picture that would hold the true story of what is up.
MRI in hand I return to Dr. Latif's office for my consultation and findings appointment This time he asked me to sit in his office with him. Very cordially he said he did not like what he saw and proceeded to show me the scan on his computer pointing out several areas on my brain that he called lesions. Then the bad news "It's MS Derek, I'm sorry" he states to me. I felt sick to my stomach, with a huge welt starting in my throat I tried my best not to break down. He quickly tried to console me by telling me that my life was not over and that I was not going to die. Sure I thought to myself, that's easier to say than believe.
Sitting there stunned he asked if I would like another opinion and would be happy set it up for me with the MS center in Rochester if I would like. Of course I said yes to make sure. "I do not want to wait, lets do this" I tell him.
One more time my sister to the rescue. A few days later and a 3 hour drive we end up in Rochester to see Dr. Goodman the chief neurologist of the MS center there. This time no shocks or needles just test results. Well, the news did not get better. He concurs with Dr. Latifs findings and recommends I start treatment called DMD (Disease Modification Drug). He tells me several are available and I needed to speak with Dr. Latif to decide which is best for me.
Now I am scared to death and trying to learn as much as I can about the disease and what to expect from the drugs. I had lots of questions that I was hoping Dr.Latif would answer for me. Informing me about the options he recommended the DMD called Betaseron. http://betaseron.com/patients/about_betaseron/what_is_betaseron.jsp
It's an every 2 day shot that is self administered for the rest of my life that will help slow the progression but not stop the disease. I receive an info pack to read and watch a DVD to get started.
The Shot heard around the world!!!!!.......Next blog!!!!!!
In the beginning there was the "BAD" news.
Most of you know by now that I have been diagnosed with MS. http://www.nationalmssociety.org/about-multiple-sclerosis/what-is-ms/index.aspx . I will try to bring everyone up to speed with the process without boring you to much. If I do, I apologize in advance so feel free to skip to the end. This may take a couple of Blogs to do.
It all started last year in early summer with a cough that would not go away. After a few trips to the doctor to be told "It must be allergies... take these pills" I thought for sure all would be well. To my and Rox's dismay the cough did not get better but tiredness and fatigue were getting the better of me. So I went to doctor after doctor trying to figure out what was going on with me to no avail.
With so many visits under my belt Roxanne made a log sheet for me so I could keep track. I must tell you after 30 trips to the Doc's it was getting pretty old and very taxing on both of us. Answers, answers, answers was all that I was looking for. How hard could that be, really?
I never knew how hard it was going to get. It all came to light after parts of my body started to go numb and tingle with shooting pain. I thought this is not good!!! One morning It came to a head when the side of my face and neck started to go numb and I thought for sure I was having a stroke or something. I called my neighbor John and asked to be driven to the hospital. I heard a screech at the front of my house, my personal ambulance driver was there. Man that was fast service I thought to myself. Running red lights and cutting drivers off my expeditious driver and I arrived at the hospital without complications.
Admitted and confused I stayed for 5 days, tested, scanned, x-rayed and poked more times than a prostitute on Orange Blossom Trail I was ready to go home. The only answer I got was from the neurologist. It could be "MS" but he was not sure. "Go see another neurologist " is what he told me when I get out for more testing. Great, just what I needed more tests. I felt as though my world was ending. I just had a doctor tell me "maybe"... I might have this "thing" he was not sure. Not liking that at all my mental stability started a downhill spiral.
Not able to eat, nerves on edge, losing weight fast I was not getting better. Stressing out and not knowing what to expect next I needed help. Roxanne and I both agreed that I needed to go to see doctors that would not treat me like a number or a patient in room #3. My sister works for Dr. Ashraff, the head of medicine in Carthage, NY so it was suggested I go there to get much better personal care.
One two hour plane ride later here I am in NY. Dr. Ashraff and his assistant Lydia visited with me for just under an hour and actually took the time to get details from me based on my logged Doctor visits and symptoms. The consensus was in. Go to the top doctor for MS in Rochester for a consultation and yes more test. However this time no wait, Dr. Ashraff made some phone calls and poof I'm in. Continued next Blog........
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