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

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

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,

Love

Derek Lee

Roxanne you win.....I am sorry

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

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.

http://www.eurekalert.org/pub_releases/2007-05/uoc--tmh051407.php

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!!!!!

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

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.........