View Full Version : 10 year anniversary, saying "hi", and health update

05-04-2017, 07:20 PM
Hi from the past! I used to be very active on here but dropped out last year after some sadness in my life. I thought I would stop in and say hi since this is an important day to me and I was thinking about you all.

TEN YEARS AGO today (May the Fourth be with me!) I had my spinal surgery. I had a slow recovery, and after 10 years I wish I could say I am back to "normal" but instead will say I am doing fine with my new "normal" - and am glad I had my surgery. Life offers many challenges and various paths we choose. The interesting part is how we can change our priorities and move on with new ways to navigate our days. A work in progress!

Thanks to all who had an input on here with me over those years.
My Charcot Marie Tooth disease is my main health issue now, even though the limitations from my scoli surgery are still present. I did get to go to one of the CMT Centers of Excellence in December for a full (10 hour) exam at the Univ. of Iowa CMT clinic. I will go back every year as this is a progressive disease. I have an axonal form (CMT Type 2) and it is autosomal dominant.

That's enough about that. Just sending my best to you all and letting you know I'm still around. Take care -- Susie

dolores a
05-05-2017, 06:01 AM
Hi Susie, glad you posted to let us know how you are doing on your 10 year anniversary, hope you keep posting. Be well.


05-07-2017, 07:52 AM
Great to hear from you.

05-09-2017, 10:27 PM
Hi there! So glad to hear from you! I also have had "challenges" and continue to try to find a quality of life. I send you my love and my gratitude for all of the awesome support that you have given me!
Hugs, Susan

05-10-2017, 07:07 PM
I seldom check in to the forum now that I am 6 years post-op. I probably checked for posts daily for the year before and several years afterwards. If one posted a question, there were several answers the same day. I don't know what I would have done without this forum. It doesn't seem to be as "active" now. Anyway, I am so glad I didn't miss your post. Congratulations on your 10 year anniversary on the 4th. I am sorry you are having other health issues. Good to hear from you.

05-16-2017, 08:34 PM
Hi Suzie Bee

Congratulations on 10 years! Thanks for all the great support through the years....

I see the IT people got the phishing thing figured out....Congratulations to them also! That kind of stuff is worse than scoliosis surgery.

Its such a shame that these things have to happen especially on a medical support forum.....

Good to be back


05-17-2017, 08:25 AM
Hi Susie*Bee,

Great news that you are at 10 years and so nice hearing from you. :-)


07-08-2017, 12:51 PM
The day after I posted this thread my youngest daughter gave birth to her first babies - twins - prematurely, at 24 weeks. They were helicoptered to an NICU hospital and we traveled to TX to be with them. The pregnancy had been deemed extremely healthy, the babies were doing great, my daughter had been declared very healthy and in tip-top shape, but these little ones (a boy and a girl) somehow did not wait till the end of August. They were born May 5. Under normal conditions with the 24 week age, there was every chance they could survive even though they were very tiny, but both developed brain bleeds and Jonathan died two days later, while Lily held on for 12 days and had given us all every hope that she would survive. This daughter and son-in-law went home after our 2.5 week time at the NICU to an empty nursery, and broken hearts that had been so filled with excitement and dreams of the future.

I have now held 3 dead grandchildren in my arms, seen them in their caskets, watched as the dirt filled up their gravesites. Last year's baby death was a 36 week perfectly formed, 5 lb baby girl who was strangled by her umbilical cord. I now have a 3 year old granddaughter who play-acts with her doll "my baby died, my baby is dead" - and after all, she has been to 3 baby funerals -- her own baby sister's and now her 2 cousins'. And my grandsons (cousins), just turned 8, have had such grief also, and parents change with heartbreak. My "little girls" and their husbands - and the three grandchildren, have been through so much. I have seven grandchildren in heaven now and my heart is broken for my family. Our lives are totally different and I wish with all my heart I could switch on the "rewind" and go back a few years. Instead, I weep every day.

Things such as scoliosis, my surgery and how I'm doing after it, my Charcot Marie Tooth disease progression, and all the rest of this just pales in the overwhelming sadness I feel each and every day.

I never got to read the responses from some of you until now and I thank you for your kind notes. I hope you are all getting along ok with whatever state you're in with scoli. You have been an important part of my life in previous years and I still consider many of you as my "friends." Signing off for now, your scoli sis, Susie

07-08-2017, 03:19 PM
Susie Bee, feeling sad and overwhelmed by your posting. I cannot begin to understand your saddness. I cannot wrap my head around all that has happened to your family. I appreciate your sharing with us. You and your family are in my thoughts and prayers.
Hugs, Susan

07-08-2017, 04:01 PM
Huge, unfathomable losses. Too much. I am so sorry, Susie Bee. {{Susie Bee}}

dolores a
07-08-2017, 06:35 PM
So sorry Susie, it sure had to be very hard to share this with us, but know that there are many prayers going up for you and your scoli family.

07-09-2017, 10:26 AM
Susie I am so sorry to hear this sad news, I can not even immagine how you must feel.
Live certainly has thrown you more then your share of sorrow.
My thoughts are with you and your family.

07-10-2017, 11:38 AM
Susie Bee,

I've been following this forum for many years, though I've never had scoliosis surgery. I remember when you had your surgery and the preparation for your daughters' weddings. You worked so hard to be able to be as well and healthy as possible and fullly present for their celebrations as you could be including surgery. We do everything we can for our children and grandchildren and to face the kind of losses you have all sustained is unimaginable to me. I am so very sorry for your tremendous loss and hope you and your family can find comfort in the love you share together.


07-11-2017, 08:46 PM
Susie Bee,
Please accept my thoughts and prayers for you and your family at this terribly sad time.

07-12-2017, 01:18 PM
Susie Bee I pray that you heal from so much heartbreak.

07-26-2017, 08:37 AM
You are all so kind and understanding. Thank you for your notes of sympathy. Am about to go visit (1,000 miles away) the couple who lost the twins. The babies should have been born in August, so we want to be there.

BTW - got a notice from photobucket that my pics are not allowed to be on here through them... so I will take the no-longer-working links off. Photobucket had been suggested by TXMM a LONG time ago. Not trying to erase myself from you, ok? Hmmmm - just tried it and they still work so I'll hold off a little while longer.

Love to all of you.