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#41 smurfette

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Posted 21 August 2008 - 07:24 PM

Razz-
I read your book in one sitting. Could not put it down. It was a great read, and very moving. You had a very interesting life so far! I admire your bravery and tenacity to have the transplant as a single parent. I know that you had to be terrified that if the whole thing did not work your children would be without their mother at such young ages. You really had no choice though and you had such wonderful support. I am in awe of you. You took control of your life and did what you needed to do to ensure that you would have a life with your children, but it was a gamble. You went through so much. I am so glad that you came through so well. Those pictures of your daughters are wonderful. They are beautiful girls. You are very lucky to have one another.

Thank you for having the patience to write it all down. It was well worth reading. I hope that you continue to benefit from the transplant and feel better every day.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#42 razz

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Posted 22 August 2008 - 03:29 AM

Smurfette,

Thank you for letting me know what you thought of my book. You're right I really didn't have a choice when it came down to the wire. To come face to face with decisions I had to make, none of my options were guranteed, was difficult at times. If I didn't take a chance my children would not have me around, and undergoing the treatment could have the same result. It was a gamble that I'm glad I took. I guess that's how life is sometimes.

I appreciate your comments on my daughters. I do see some of my traits in my daughters. (Mostly head-strong and independent) At this point in my life I am content knowing they have the tools to take care of themselves. I can stand back and just be their advisor, if they need it.

As for me, I am a work in progress. Healthwise, I do feel quite normal with the exception of strength and weight. I do have a project in mind right now, hopefully it's not beyond doing. But I do want to do something for our scleroderma(ian) community.

Thanks again Smurfette. Your comments made my day! I hope you have a great day today too!

Hugs,
Razz
Live well, Laugh often, Love much

#43 smac0719

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Posted 22 August 2008 - 12:15 PM

Razz,

I ordered the book this afternoon. Can't wait to read it!
I may have Scleroderma, but Scleroderma doesn't have me!

#44 razz

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Posted 23 August 2008 - 02:29 AM

Smac0719

Thank you. I can't wait for you to get it so you can give me your thoughts. So far the feedback has been good!


Razz
Live well, Laugh often, Love much

#45 bowbec

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Posted 24 August 2008 - 04:51 AM

Razz,
I read your book yesterday. It was very interesting, I couldn't put it down!
I want to say I enjoyed reading it but at the same time hated to hear all you had to endure...
Thanks so much for telling your story.
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#46 razz

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Posted 24 August 2008 - 05:48 AM

Thanks Bowbec!

I appreciate your kind words of support! I guess you can say I have thick skin (pun intended) and didn't have many options left. Thank you for reading my story! There are so many of us affected with autoimmune diseases that the more attention we bring to our cause, in turn will create increased interest and research.

Hugs,
Razz
Live well, Laugh often, Love much

#47 smac0719

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Posted 29 August 2008 - 11:24 AM

I am axiously awaiting the arrival of my book. I got an email that it was shipped on Monday and had high hopes that it would be here by today. Going out of town for the holiday weekend and wanted to take it with me to read. Oh well, hopefully I'll have a surprise in the mail when I get back. I feel like a kid waiting for a present! :P
I may have Scleroderma, but Scleroderma doesn't have me!

#48 razz

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Posted 29 August 2008 - 01:24 PM

Smac0719,

I'm glad to hear it's on the way! I'm even more excited to hear you're going away for the holiday weekend. I hope wherever you're going there's plenty of relaxation and fun! (I like getting packages in the mail too.) :lol:

Hugs,
Razz
Live well, Laugh often, Love much

#49 Leslie R.

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Posted 29 August 2008 - 02:49 PM

Hi Razzberry,

Congratulations on your book and was wondering what is your book about? Let me know when it is out for purchase and good luck with the publishing.


Sincerely,
Leslie R

#50 razz

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Posted 29 August 2008 - 05:26 PM

Thanks Leslie,

It’s a biographical journey about my life beginning with my mid-20’s and leading up to my diagnosis with scleroderma. Shelley Ensz’s Post 37 of this thread gives the title and link.

Hugs,
Razz
Live well, Laugh often, Love much

#51 smac0719

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Posted 09 September 2008 - 03:44 PM

Razz,

I was too anxious to find the previous post so started a new one. I finally found my book in the mail when I got home today from work and taxi'ing my sons! It is absolutely amazing that you were able to penn your experience so wonderfully. I just finished the book and I have so many emotions running through me right now. Over the past couple of hours I have laughed, cried, smiled and frowned (at the 1st Dr experience). I don't even feel well, but just couldn't put the book down. Your spirit, strength and determination was and still is phenominal. It sounds like you have wonderful daughters and a great family. The right people were also placed in your path during your stem cell quest. I also enjoyed the pics you included as well.

I highly recommend this book to anyone who loves to read and wants a great insight to one persons journey with Sclero. Again, kudos to you Razz and thank you for your words! I'm going to purchase a copy for my Dr, mom and brother. I'm going to share my copy with friends.
I may have Scleroderma, but Scleroderma doesn't have me!

#52 razz

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Posted 13 September 2008 - 09:37 AM

Smac0719,

I get excited too when I get feedback! I feel like a student getting her thesis graded. My niece Kristine, is 30 something and we've lost touched over the years, but see each other at family get togethers, told me she couldn't put it down and when she got off the train, sat in the parking lot for 1/2 hour to finish reading it. Then her daughter, Alicia, she's 9, saw it on the coffee table and was tickled to see she knew the author. She's been reading it and learning a lot about her auntie. I enjoy knowing my nieces and nephews see me in a different light, as someone who overcame a deadly challenge and continues to overcome any challenge I meet.

The right people were put in my path. I don't want to ramble on, but I do appreciate your comments. You made my day too! It's so dreary and gloomy right now. Lot's of grey skys and lots of rain. I'm trying to motivate myself out the door into this rain to go to a baby shower. I know once I get there it'll be fun.

Please do pass my book on to others. I even enourage anyone who doesn't have an illness to read it. Because it's not just about a disease. It's about recouping and revamping once you've been dealt a whole new life alteration. It's making adjustments and surviving one day at a time with help along the way.

I'm glad I could make you laugh and smile. Some pictures I would have taken to the grave with me but vanity went down the drain along with my diagnosis. Don't get me wrong, I do like to dress up, get a nice hair cut and put a nice color lipstick on :blush: . Confidence helps you hold your head up high no matter how we look or feel physically! ;)

Thank you so much. You've also reminded me I shouldn't get lazy but stay focused on the awareness factor!

Lots of hugs,
Razz
Live well, Laugh often, Love much

#53 jaxs

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Posted 15 September 2008 - 03:31 AM

hi razz,,,
thats great to hear welldone take care and look forward to reading it :rolleyes:
live life for today and not for tomorrow

#54 razz

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Posted 16 September 2008 - 02:31 AM

Thank you Laxs. Glad to see you're back posting on the board!



Hugs,
Razz
Live well, Laugh often, Love much