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rob
08-04-2008, 06:49 PM
Hi everyone,

I hope everything is going well for you all. I'm sorry about my absence. My neuro appointment two weeks ago revealed that I have what's called Secondary Progressive M.S. and of course, our old friend Lupus is still active as well. S.P. is an advanced stage of MS. I've had MS for alot longer that the neuro originally thought. Some of my CNS damage is permanent. I'm going to have to have a longer duration IV methylpred treatment. Not fun. Trying to figure out what symptoms are lupus, and which ones are MS is an impossible task. So many of the symptoms are the same, or very similar. I have permanent cns damage in my lower/lumbar part of the spinal cord and the nerves that eminate from there, that's what is causing my sudden loss of control in my legs, and the inevitable fall that comes with it.

I don't know what happened to me that day after learning all this. It's like my mind just said no more, and shut itself down. It's like I was numb. I retreated into a serious case of denial. Dad says I was just this monotone voice, and that I just disconnected from everything. Thats why I haven't been here to talk, I couldn't talk about.

Anyway, I'm doing OK mentally. I'm now talking about all this, so I guess that's a step in the right direction. The good news is, I went to the airshow and flew two of my planes, and didn't make any mistakes. That was Saturday, and being there kinda opened me back up I guess. It was a good day. Dad had a great time too.

I need to cruise the forum, and check my personal messages to get caught up. Might take me a day or two as I see I have a bunch of messages. Thank you everyone for all the encouragement you've given me. And thank you for being so understanding about my inability to talk. It's good to be back. Goodnight all.

Rob

cheryl_v
08-04-2008, 08:05 PM
Glad to see you back. You had a lot to deal with, quite understandable. Hope to see (read) more of you.

You fly? Wow, that sounded awesome!! I love the air shows, couldn't imagine being in the plain.

Saysusie
08-04-2008, 10:39 PM
ROB:
So happy to see you back and so glad to hear that you went to the air show and were able to enjoy yourself.
There are no words to express how much your news has also affected me and I can only offer you my support and friendship!
Sleep well!

Peace and Blessings
Saysusie

ColleenT
08-05-2008, 02:07 AM
So glad you're back Rob!!

I'm sorry to hear about the MS and that you have been down such a difficult road. I'm not a very good poster because words don't really come easily but Please know that I'm thinking of you and we're all here to support you and be on this road with you.

ColleenT

Pretti in Pink
08-05-2008, 06:27 AM
Rob,

You've had a long hard journey and it's understable that you needed time to digest things for yourself before you discuss it with others. I am glad you are able to now talk about it becuase it will certainly help.

Doing the airshow seemed like it did some good as well. You will be in my prayers and I encourage you to keep on hanging in there.

KathyW1958
08-05-2008, 08:10 AM
Hi Rob,
I am glad that you are back. I am sorry to hear what has happened to you. I am glad that you got to go to the airshow and that you had a good time. I hope to hear more from you as we all care very mouch for you.

Hugs,
Kathy

rob
08-06-2008, 06:01 PM
Thanks, thank you guys. I don't know what to say. Words used to flow easily, but now it's hard to speak or express things. I hope you are all doing OK. I don't know why this all had to happen. Thats just the way it is I guess. It's good to hear from you all. I'm still geting cought up on things. Gotta read more to see how everyone is doing.

Faith
08-07-2008, 03:07 PM
Hi Rob,

It's good to have you back. Sometimes it takes a while to digest the info we are given and accept it.

It sounds like you and your Dad had a lot of fun.

I was thinking about you last night as I watched a show on Terri Garr who was diagnosed in the 90's and just recently came out to do everything she could to support MS. She also has a book, I believe.

I am glad you are back.

Faith 8)

Oluwa
08-07-2008, 03:42 PM
Hi Rob...

Lovely to see you out and about.... cruising.

Denial has many faces, Oluwa, Faith, Cheryl, PIP..Rob...a face we can only wear for a while. Then we have to reveal, face the enemy with our true emotions.
We know how it feels for different diseases different reasons. Denial always seems safe, but with a disease it can hurt our health...We have to be in the driver's seat and not in the trunk with all that junk just going for a ride.

When does the regime, IV's start....?

Thinking of you often....
Hugs,
Love,
Oluwa

rob
08-18-2008, 03:19 PM
Hi guys,

I'm happy to see WHL back up and running. I'm in a better place today, than I was when I started this thread. I'm finally learning to accept things the way they are. As always, some days are good, and some bad, but I'm not in the dark hole of isolation my mind imposed on me last month. The numbness of emotion is going away, and I'm beginning to be social, and laugh again. Thank you all for all you say and do. I cannot tell you how much I appreciate the support.

Rob

hatlady
08-20-2008, 05:10 AM
Rob, I'm glad you're starting to come to a better place about all of this, you've had a rough road. We're here for you, and always ready to listen and offer support.

May you find blessings in each day -