Havent posted in a while
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September 17, 2009 at 10:03 am
Hello everyone.
I see there are many new friends here…welcome !
I just wanted to give an update. I’ve been doing pretty good for a while…I watch the posts and continue praying for everyone. I’m so proud of Alice.
I am on facebook so if anyone would like to join me, let me know.
I just returned from 7 days in Walt Disney World with my husband, Connor, and stepdaughter. We had an absolute blast. I rented a scooter from an outside company…to think I thought I wouldnt need it ! Thank God my husband “made” me do it or I wouldnt have lasted the first twenty minutes.
We were there for Connor’s bday and he had so much fun. I had said this would be a once in a lifetime trip for us but there is no way I can hold myself to that. I plan to go again in about two years. 😀
I feel very blessed to have been able to go.
My CIDP seems to be holding steady. No real changes that I can see…I am learning when to slow down and accepting things much better than I ever did.
Too bad it took me three years to accept..but, I did. I know that my days of walking the beach are limited so we’re going back to the beach in March.We went to Clearnwater beach, Florida and just like when we were in MyrtleBeach in June…I didnt venture out to the waves and body surf. I have to fully rely on my husband to help me walk thru those waves and I feel bad asking and scared that I wont be able to do it.
I plan to just do it when we go in March…I regret not doing it these past two times.I am getting my IVIG every four weeks, two days in a row..80g total.
The only stress in my life are the rotten people I work with. Otherwise, life is good…and I know to be thankful for my job..which I am…I just cant stand the backstabbing wenches I deal with. I’ve told you about them…and why I didnt use the cane at work for so long.
Now I use the cane allllll the time….it was a matter of time regardless.When we were at Disney, my stepdaughter made a comment about how lucky I was to have the scooter. I told her it’s not luck…that I’d much rather walk like she does, etc. A while later that night, we were at a wishing well. Connor thru a coin in and told me, “Mom, know what I wished?” “I wished your legs worked so you didnt need the scooter.”
My little man…is 7 now. While awnry as all can be…I’m so blessed to have this wonderful young boy to drive me every second of every day to be all that I can and do all that my body will allow.
I hope everyone is at their best.
Well wishes.
Stacey -
September 17, 2009 at 12:01 pm
Stacey,
I am glad you got to do the Disney World thing. I know exactly how you feel casuse we did Disneyland and I did it in a wheelchair. In the beginning I hated to admit defeat and that I needed it but in the long run it was the best thing to do as everyone got to have a wonderful trip.
About the office girls…just remember you only have to be with them for a few hours each day and then you get to go home to those that really matter in your life. Try not to waste your energy on them but save it for your family!
Take care and give that little man a hug,
tears came to my eyes to hear that he wished for you to be well.Rhonda from Canada
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September 17, 2009 at 12:07 pm
Hi Stacey,
Welcome back!
What a good report you have given us. Glad to know that all is good for you and you had a great time at Disney World.
We went to North Carolina and I was able to walk in those ocean waves with help from my husband. The sun and ocean breeze were wonderful.
Keep using the cane and don’t let those at work upset you, (kill them with kindness).
I wish Connors wish could come true for you.
Happy for you
Shirley
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September 17, 2009 at 7:42 pm
Hi Stacey,
Glad you are well and stable. Disney is a blast, especially for a boy Connor’s age, and for the parents. when it comes time to leave every one we know says. we are defineately going back. Hope you guys do too, once is not enough, we did it 3 times so far, and will probably go again if things allow.
Once again, Happy for you, things seem like they are going as best that they can. See Ya–tim–
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September 18, 2009 at 2:13 am
Stacey,
Congratulations.
A part of healing is acceptance. Acceptance allows you to seek help when you need it, and helps you realize that you need help more than you want to admit.
I baked an apple pie today. I made my own crust. First time ever !!! I was totally surprised.
The moral of the story is that you can still do many things, just a little differently.
Congratulations !!
Dick S
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September 18, 2009 at 9:08 am
I dont know what it is. I was at Disney and when I had to back the scooter into and onto the bus, I often looked at my husband. He’d look at me with this look on his face that nearly broke my heart…it was the look of “I’m so sorry honey”…
I also looked into the faces of the crowds of people waiting b/c I was allowed to get on the bus first. Many folks ended up waiting for 2nd and 3rd buses…and I got the first bus…always. I got the “priority” attention.
The first day or two, I really felt like crap…I hated the way the people stared, glared, and I always thought I knew just what they were thinking.When my stepdaughter told me how “lucky” I was to have the scooter..well, that changed things a bit.
I realized that the “lucky” ones are those who are standing and waiting with the stares, glares and thinking ugly thoughts about people like me in a scooter. They CAN stand in line for hours, they CAN walk more than a half of a block. The can even run to the bus if they’re late. They dont have home health care and Ivig or pain that cant be explained to another. They dont know what it’s like to wake up and be afraid that they cant walk a few feet to the bathroom. They dont live with a fear of a very uncertain future.
It wasnt long and my attitude changed. I wanted a sign on my scooter that said, “I’d rather be walking, or I’ll trade my legs for yours”. I really believe it was then…acceptance hit me. Either buck up or feel sorry myself. Feeling sorry for myself is the last thing I want to do. Was I going to cry b/c of this…in Disney of all places ??? NO.
I didnt feel bad or embarassed any more about being first on the bus with a scooter and cane. I’m not the lucky one…but, b/c I have what I do…if there is one thing I can benefit from because of it, like getting on a bus first…heck ya, I’m going to take it and be proud. I cant walk Disney World…and CIDP might take alot out of me and away from me, but, I guarantee it wont stop me from going back.
Have a great weekend everyone…
and maybe remind me of this when I feel down someday…;)Congrats on the apple pie, Dick. Sounds yummy !
Stacey:)
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September 18, 2009 at 11:27 am
Stacy
Glad you had a good time…I am one of those lucky ones that dont need any walking aids since I got my CIDP undercontrol…but since I was in a wheelchair and used a can and a walker I dont judge people anymore if they are using aids I try to help them if they require help…They way I look at it if I was using one of those aids is at lease im getting around and not suck in one place…if you want u can add me to facebook you can find me by searching [email]lprohaszka@yahoo.ca[/email]
Hope to talk to you some more
Lindsay
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September 20, 2009 at 11:22 am
Hi Stacey,
Good to see you on here again. I just wanted to let you know that I’m on facebook and would love to add you. Can’t wait to talk to you again.
Take care
sherry Price
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September 25, 2009 at 9:27 pm
First off—Happy Belated Birthday Connor!!!!:)
Second—CONGRATS STACEY!!!! I’m soooo proud of you!! for your new found life and your acceptance!!! BIG HUGS!!!:cool: You have conquered the Giant Step, moved that mountain that first inch!! Its all downhill from here Hun!!
Clearwater is Beautiful-went there when I was young! Loved it!. Just Do It Woman!! The next time I’m at the beach I have bodysurfin on my Bucket List! You can do whatever you put your mind to!
BELIEVE!!:DCanes come in handy as a weapon of choice!!;)
I’m on FB too!
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