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
I love you Derek! We are going to get through this, and you will be better, and stronger from it! I promise! And you are where you belong right now, with family who can wrap our arms around you with all the love and support you need... =)
ReplyDeletelove you!
BJ
I am so glad you posted. Mike and I were so worried about you. We are glad to hear you are moving back and look forward to seeing you again!
ReplyDeleteDerek,
ReplyDeleteI hate MS; I think you will agree, and I think my sister would agree with that statement.
MS does a lot of terrible things to a person's body, BUT what it can't do is take your self respect. That is yours.
I think what you need the most is to love YOURSELF, and then MS can't take your self respect. Nor can anyone else.
Donna
Derek,
ReplyDeleteI hope and pray you are on your way to healing your mind, body and spirit. I've heard it said that what doesn't kill you makes you strong.....Well, what if you didn't sign up for that extra-strength training?!?
You start to think, when am I going to catch a few breaks? And I believe at some point you should be entitled to a free pass. I know it's not really my call, but if I were in charge, I would give you one.
I think you've had your share of "character building" and I pray that things begin to lighten up a little. In the meantime you must refuse to give up. Regardless of your physical limitations, you have to remind yourself that you can set goals and dream. It may take longer and require frequent rest breaks.... or you may have to get creative in order to get things done, but if you continue to push forward, you will start to see that you are going to make it.
Remember to take things one day at a time, being flexible and allowing time for the unexpected. Do not beat yourself up when you have setbacks or delays. Find a way to keep a good attitude and don't forget to keep God in your life. He knows every road block you will encounter, and He will give you the strength, wisdom, and courage to endure the race.
As always Derek, we are here for you and we love you!! - Missy
Tremendous, Derek:
ReplyDeleteLook what you just wrote: "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".
That's just awesome. You have control of the game. Don't care what it pitches at you - keep batting like hell and kick ass. Bat that baseball clear out the stadium for a home run.
Awesome
Ray
Hi Derek, It's Amy. You need to keep your head up sweetie!!!! I know how you feel. I know you feel like you are self worthless, sad, depressed and wasting your time on this earth. But babes you are not alone!!!!! Don't let MS take over you, you take over MS! Like I said before this is going to be a challenge in your life, that you have to deal and face with everyday of your life. It sucks having this illness, but you know what at least we are still alive and don't have the worst illness! You just need help to cope with this challenge in your life. At the beginning for me it was very difficult to deal with having MS. But day by day and with GOD by my side, I was able to understand "why is this happening to ME." Having family and friends by my side made it easier for me. Sweetheart just think positive, keep going to church and be surround by love ones and you will see that YOU CAN DO IT! I promise Derek "you will be OK!" I LOVE U BABES!!!!!!!!!
ReplyDelete~Amy~
I say take the bull by the balls, chew em up and spit out with a nice glass of Merlot!!!! Love Ya Aunt Fred
ReplyDelete