Don't Wait for Death. Make the B*****d Work For It!
 

I've not posted on the forums much but I have been "lurking" to keep up. I feel very badly for all those experiencing such difficult times with being undiagnosed, their disease, their lives, and relationships. My thoughts and prayers of support are with you all.

I've continued to progress in disability and severity of symptoms since my last post. Funny how my relationship with two different neurology groups has come to a close. Both overtly admit there is nothing they can do, no sense for further appointments unless a severe acute situation develops. They refer me back to my PCP for "maintenance" to keep me comfortable etc.

I'm now using my power wheelchair in the house on a regular basis. I so hate to disappoint you all but I believe I won't be in the up coming Olympics, competing in Wall Walking and Furniture Bouncing. I'll be leaving it to the "newly diagnosed" to carry on. I do love my three wheel Pride Go-Go Elite power scooter. It affords me so much freedom and fits in the trunk of my car.

OK! Now, let's address the title of this post. I have some people in my life who feel I should, "take it easy," "don't over do," "back off, you're spending too much energy." What the h*** is that all about? I got sucked into that mentality for a whole two weeks and said, "life is too short for normal people why should I sit home waiting to die?" Yes, when I exert energy I pay a severe price but have found it to always be worth it.

Now, every single day my goal is to push the envelop, totally living my old Army Airborne/Ranger unit's motto, "Evaluate, Adapt, and Overcome." I am actively pursuing activities not thought "safe" for someone with my disease. Yes! I am going to make that b*****d Death work for it!

I surprised my wife on our 36th wedding anniversary with the fulfillment of her life long dream. On our 37th anniversary we are going on a two week round trip cruise from LA to and around the Hawaiian Islands and back to LA. Flying first class from Virginia to and from LAX, cruising on the Golden Princess in a Veranda Suite with balcony. Honestly? I didn't feel comfortable waiting any longer to do this with her.

Let me close by sharing with you to not wait to get your final situations in order. See a good Elder Law Estate Attorney, set up trusts, protect your assets and establish your final wishes NOW! Check your life insurance policies too. I found two life policies that have Disability Waiver of Premium riders I was not aware of. Filed against the insurance company and won full retro payment for all premiums back 94 months. Plus, no more premiums through age 65. So, don't wait, do it now.

Until next time my friends.

You are my hero! :hug:

Amen to that, Craig! About 7 years ago I threw all caution to the wind and made it my life's purpose to do everything I was aiming to do in retirement. I am SOOOOOO GLAD I DID! Much of what I've done would be too hard for me now.

My objective is to keep doing everything right now, not to think about it and plan on it for the "future". What future? I'm going broke at breakneck speed and I have no regrets. I don't want to leave this world with one, single "wishIhadda".

God bless you Craig, you're awesome! Enjoy your trip with your wife. :hug: And keep up the great spirit, you inspire me!! :) :hug:

For 20 years, my DH and I worked hard in the prisons. We didnt spend money on any travel. We knew we could retire at 20 years, and we are saving our money to travel, and have fun when we retired in our 40s.

I was 44 when i retired. My husband 49. We finally bought a house in the back woods of NH and were ready to travel. Went to the local MD for our yearly check up before we leave on our first trip and ....he said...You have MS. :eek:

How I wish I would have taken advantage of all of those travel plans we turned down thru the years. All those things we saved for, only to have to struggle to get their. Im angry! I wait, saved, and planned for this,and MS stuck her fat head in the door and spoiled it.

I need to get up and go, MS or no MS. Thanks for the shot of courage. :hug:

Craig,

Your words always inspire me. I'm Irish, Dylan Thomas' words have been in my head since age 16, when none of this was happening "Do not go gentle into that goodnight. But rage, rage against the dying of the light".

We did two cruises, found them great. I'll look for you in the Olympics. Me in the chair. you in the scooter, bet we have the silver and Gold sewn up in the bang and chip the doorway paint category.

"Evaluate, Adapt, and Overcome"

This needs to be the new MS slogan! Actually, everyone could use it....MS or no MS.

You're an inspiration and an encouragement to me. Please post some pics for us of your cruise. :)

God has decided to keep you here for a lot longer, for a reason and your courage to follow that lead is wonderful. :)

I salute you my friend..:hug:

Yes, please, pics of the trip, would be great!:cool:

Craig, I am SO impressed !!!
Happy Anniversary :D Have the best time!!!
Thanks for sharing :hug:
Linda

God Bless You, Craig!! What a good reminder to keep pushing forward even when this lousy disease pushes back. Have a wonderful time on your cruise and yes, please post some pictures!

Hey kicker -- I'll be a shoo-in for the Bronze in the bang and chip the doorways contest!! Mine have been painted -- and painted -- and painted -- well, you get the idea.

It's always good hearing from you, Craig. Even if our doctors desert us, we're still here for each other! Take care......:)

Hi Craig,
You know we adore you, don't let the wife know.:D You are some he!! of a guy. With all your new problems you forge ahead. Enjoy your 37th wedding anniversary with your wife, and don't forget to stop and smell the roses, or the ocean, or the great food and deserts.

She is lucky to have such a smart guy. Bless you my Friend. :hug:

You guys are so wonderful! I so appreciate the support and warm comments. You have given me a great idea about the pics and have never even considered it before now.

Please allow me to share a couple of pics taken of Joyce and I while taking a long weekend in Virginia Beach, Virginia. We visited the Virginia Marine Science Aquarium, saw the new "Under the Sea" in the IMAX with 3D. Boy! 3D ain't what it used to be. I swear one of those sea lions pooped on my lap. :eek:

I hope these pics come out for you. As you can see, we are both very shy and reserved people, especially in public.

Thank you all!

We have that profound sense of reserve in common, Craig.

You guys ROCK! Thanks for the pics!

oh the pics are so great Craig I love the one in the shark!!!

I hear ya on seize the moment and not let stuff stop you.... yeahhhhh

as one who is undx for many years, of something that looks and feels and PT and others think MS... without any test showing stuff so no dx from neuro.... thanks for the support and care!!!

I took on a challenge this past March and I went downhill skiing with my father... now my father went thru cancer and very very weak now... and 77!!:eek: I myself have battled with balance issues, vertigo, weakness on right side etc etc... and neuro the year before when learning I want to ski sometime again... said well I hope not this year due to the balance issues....

but I seized the day... and I did it.. and my dad did it! together it was a great memory... as I am not sure how long I have my father around.... next year I want to get out there and take a kid or two for lessons... try to do it for as many years as I can at least a trip or two for a day of skiing....

I even made it down black runs... challenging myself to ski the old way... in control but fast fast so if lost control yes I would have broken a leg or what not... but hey no worse then what my spasm body does to me from working on my feet full time......

ok going on too long lol... that is me big big talker!!

I am so proud of YOU!! no matter how bad it gets you are getting thru and going for the GOLD olympics or not.. you are winning!! yeahhhhhh craig

thanks for the inspiration.... I am no where near close to some here on disability level... but at age 40 body is so much worse than age... but you have inspired me to remember life is precious... go and enjoy... do not put off due to this crap!! hugsssssssssssssssssss,sarah

Great pics, Craig & Joyce. Thanks for sharing your good time with us...:)

Craig,
Very inspirational post...and wonderful that you're taking your bride on a very special trip to celebrate your years together.
Hope you enjoy Hawaii as much as my DH and I do!!

Thanks Craig for your very insperational post. I needed to read something like that.

Had a very bad situation happen and was ready to say the he!! with
everything and everyone. Your post made me realize what is really important and that is MEEEEEEEE!!

Hope that you and the wife have a very wonderful and memorable trip to
Hawaii. Send us some happy pics!!

SAFE TRIP!!!!!!!!

Jappy :hug: