He has a new plan of every 4 weeks with infusions of high dose steroids then 4 week of chemotherapy treatment infusions then see how it works and if I don't respond blood transfusions to be done 6 weeks apart. All In hopes of wiping my immune system clean and starting it anew. This is a very controversial optional treatment but I have to fight and never give up. I know this shit is hard on my body and even more on my mine, because I have to do it alone. It makes me angry and most of all abandoned and betrayed. I made promises and never did I think I would be alone for the ones that were made in return to me. I have not said bad things about who i thought was my best friend but it seems that now its time for me to stop pretending that my life was not a big lie too. Talk about a giant let down and I feel so stupid for giving my love away now to be turned away!!! talk about hurt. I will take watever MS dishes my way,but to feel the firey stab of betrayal hurts more than you can imagine. Ive lost my best friend
Im trying to deal with the house selling and all the other things and the rentals that I'm left with
and running out of money quickly. I mind is not working properly because of MS and all the drugs I'm on. thinking is too hard so i feel like im in some kind of a fog that never clears.
I need Help!!!
Thank you all for your support, it means the world to me. Letters, post cards, emails and phone calls don't go unappreciated. Thank you friends.
Derek
Many people have a wrong idea of what constitutes true happiness. It is notHelen Keller
attained through self-gratification, but through fidelity to a worthy purpose.
Derek,
ReplyDeleteI can not begin to imagine what your going through, how you feel, or what it's like to live in your shoes for one day. I know that you are the most caring, loving, compassionate friend anyone could ever ask for. I've seen first hand the friends and lives you have impacted, just because you take the time to say hello, or ask can I help you. I knew the first day we met, that you were someone special....not as in the short, yellow, bus special. What can I do to help? Would you like to get away and spend sometime in Atlanta with me and my family? I will be traveling to Florida in July, do you want to travel down there and check on a few things?
Bottom-line brother, I love you, your friends love you, most importantly God loves you! What can I do to help?
Love
Ty
still can't master the reply-to-blog thing. I'm sorry to hear things aren't improving for you. I know you and I and everyone else who cares about you hoped you would feel at least some better with the new therapies. I know, though, that despite any of that you will hold fast to plodding along, day by day, in you quest for that one elusive treatment that will take hold and provide you some relief and a semblance of peace of mind. I share your entries with Monica. She asks about you at least once a week. She wants to chat with you if you're up to it. No pressure. She cares, too.
ReplyDeleteI think it's a good idea to be as candid as you want to be with us, all of us, your friends, about how you're really doing. No need to sugar-coat any of it. Besides, the sugar-coating hasn't worked for you or us...because we know you and we know better! And being candid helps you to vent frustration. Every time you can "tell the story" you can let go of a bit of it. Heck, if nothing else it makes room for more crap to move in and not overload the system as much. Give it a whirtl...try it out on me if you wanna. :)
Steve and I miss you a lot. Only faint copies selling tools these days. We were so spoiled with you. We've gotten a little busier but nothing earth shattering. Brought on a new guy even. We'll see. Still hard to keep being optimistic but, like you, we'll continue to plod along in hopes of hope.
Be good to Derek. He matters.
Love ya,
Claudia Elliott
Hi Derek,
ReplyDeleteSorry to hear things are not going as well as expected. In spite of this I am glad you are with family, those that love you. You really need their strength and love right now. Have you or your doctor tried IVIg. It is Gamma Guard, Human Immunoglobulin. We give it to some or are MS patients that were either allergic to Solumedrol or could not do Rebif.
Hope you find just the right thing for you. I will keep you in my prayers. Stay on a healthy diet. An though it is hard,keep doing all you can.
Love,
Conchita
Derek, let me know if you want my help to check on your rentals or what ever down here...Call any time.
ReplyDeleteMarina
Thank you!!! Thank you for telling us the truth!! You have to realize that no matter how you are feeling whether it’s good, bad or indifferent…. those of us who truly care about you want to know about it. We will always care!!!!
ReplyDeleteI can’t tell you how utterly appalled I am to think that someone you loved and shared so much with would leave you in your greatest time of need. You believed in someone and their visions and dreams. It’s a sad day for you to have that thrown away. I know the kind of person you are and you truly have a good heart.
My words of encouragements would never start off with “your fine just get a hobby.” They should have been …”I will be there for you no matter what”… “We will get through this together”… “We can simplify our lives and work on getting you better”….or maybe even a simple “I Love You!!!”
I wish the one you loved could even begin to understand what you deal with on a daily basis. The every day shots, monthly infusions, devastating depression, doctor’s visits, physical limitations, loneliness, financial struggles, betrayal… all of it. She has no idea and expects you to still take care of things going on in Florida while you are thousands of miles away trying to deal with your MS and all of the horrible symptoms that come with it. She got what she wanted by running away from the person she made a lifetime commitment to.
I’m so glad you’ve joined the MS support group of western NY. Stay strong friend. Stay strong and never give up!!! People do care and do love you unconditionally.
Remember, ”You reap what you sow. What you put into the lives of others comes back into your own.”
Karma