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.........

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!!!!!!

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........