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04/18/2012 01:00 AM

Dr. Herbst update about "new" DD Brochure :O)(page 3)

myladylumps
myladylumps  
Posts: 230
Member

Hi Lumpysoftee....

You made me teary eyed with your comments and such kinds words. THANK YOU!, from the bottom of my heart for that.

You are so right we are not alone, we are all together dealing with this dreadful, horrible and debilitating disease, trying our best to help and be there for one another. How true it is how special and blessed we all are for having each other. I am so grateful for all the amazing and long term friendships I have made through this web site and beyond.

You hang in there too sunshine, stay strong and may GOD give you blessings with less painful days. BIG HUGS and KISSES from me to you!

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04/18/2012 03:34 AM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Myladylumps..you are the heart of our group. Every group of peeps needs a heart. You are our Tin Man..I mean Tin Woman! I think of Dr Karen like she is the Wizard and we all need to follow the yellow brick road to see her. Of course she doesn't hide behind a curtain..but I sure would getting my nude exam! So I sent in the disembodied pictures..me without a head..not good pics at that...along with the release form. When the brochure is ready..I want to send a SASE for a copy and have copies made here as when you print off the internet the colors aren't as good. Maybe? I hope to hear from Dr Karen tomorrow about more info my lab needs. I was working with Steffan and Amielyn today about the conference in Sweden on type 3. Steffan is upset as more people are not coming. I will ask Dr Karen about that too. Your heart is too big to hold all of the love that spills from it. I have had this condition since I was a child. I had rheumatic fever bad. I had to take aspirin when I got dental work most of my life. My cardio did a cath..he was going to go in and take out blockages but they are in a hard place and he could not do it. The blockages are in the two main arteries to the lower body..one is 75% and one is 80%. They did not get any worse in six months. I take Plavix and Vitorin and aspirin. What I am noticing getting worse is my shortness of breath. I use oxygen when I sleep and when I am out shopping the stores for teen girls clothes! But if I try to walk..even just into a restaurant..I have to use portable oxygen. If I do something really exhausting like taking a shower and dressing Smile I get winded. You don't realize how wonderful it is to just breathe..until you can't. So John and I cut quite the dressy swath. He in his leg braces with his quad cane and EEG wires coming out of his head..and me on my trusty scooter with my support socks and oxygen mask. He has blockage in his carotid which is staying around 85% so no surgery yet. I gotta go..big day tomorrow..but you will be find! Your heart will be fine. The cardiac doctors are just amazing. I also have mitral valve regurgitation and had a catheter ablasion done where they burned out some bad connections a long time ago..like 15 years. I was awake for that and it was very interesting watching the cathater make it's way through my heart. I was awake for the cath also and the scary part was when the nurses almost dropped me off that very narrow table! I was prepped for a groin entry but the doctor changed his mind and went in through the wrist so they had to roll me over on my side to put the "arm board" on the table. As I was rolling off the table I grabbed a big guy nurse..he said "I got ya" and I said "no you don't got me". So I am not in a hurry to go back. I need a V stent so maybe I will have to have my chest cracked. I just am not allowed to have any other surgery until my heart gets fixed. Please relax my dear Lady..you are in good hands. Work is just work..I should have quit years before I did..more later on SS disability hints. We all love you MyLady..take care, hugs, Grandma Sylvia

04/19/2012 12:47 PM
lumpysoftee
 
Posts: 100
Member

Grandma Sylvia,

You are the backbone, along with Damien in here. I always read your comments because you are so knowledgeable and have been through so very much. Thank you for your efforts in here despite how badly you feel. This group is beyond amazing. Each member has something really important to give, and each is different to the betterment of the community. I feel blessed to be a part of it.

MyLadyLumps,

I am glad that you felt better after reading my post to you. You are indeed the heart of our group. The only wish I have is that you lived closer to me or vice versa; I think we'd be great friends in person as well. (((Hugs))) and kisses to you as well, and hoping your day is filled with encouragement, hope, and wellness.

I cannot wait to see the brochure!((jumping up and down))


04/20/2012 08:05 AM
myladylumps
myladylumps  
Posts: 230
Member

Good morning our most AMAZING Grandmasylvia....you are such a pillar of wisdom and strength. I hang on your every word and comment and you always reach such a part of me with your shared comments, encouragement and genuine kindness and care. We need more people like you in this world, it would be a much better kinder-gentler place to be in.

You and your husband are truly amazing as I have said many many times. What you go through every day and then on top if all you spend unselfish time out of the struggles of your day just to help others such as myself. When GOD looks at you, I can only imagine what a huge smile you must put on this face.

Please let me know if ever at all I can be any help or assistance for you. Also PLEASE keep me posted with the response with Dr. Herbst. I am really excited for you that your finally looking into getting some of your DD testing done.

You be well my very special DD friend and my GOD bless you with laughter, contentment and most of all happiness and love :O) oxoxoxox!


04/20/2012 08:50 AM
myladylumps
myladylumps  
Posts: 230
Member

Good morning Lumpysoftee....I wish we all lived closer to each other. Wouldn't that just be awesome! Even though we don't we can still can be close and dear friends :o)

You take care sunshine and have a terrific blessed day!


04/27/2012 07:45 AM
myladylumps
myladylumps  
Posts: 230
Member

Hi LuSenda....

I sent you a private message this morning but I thought I would also put the message here for anyone else that was interested regarding the list of blood work tests Dr. Herbst had me do.

The discussion title is "An appointment with Dr. Herbst" and it is dated 09/17/11 at 9:48 am.

Good luck...I hope that this helps you and anyone else.

Please always feel free to contact me if you should have any more questions that I can assist you with.

Take care my DD friend and friends, be well and have a very blessed amazing day!


04/28/2012 12:28 AM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

MySweetLadyLumps..thanks so much for the reminder. You are always there when we need you...with such kindness and real help. Be well! Hugs, Grandma Sylvia

05/04/2012 10:08 PM
myladylumps
myladylumps  
Posts: 230
Member

Hello my very special Grandmasyliva...your very welcome with all my heart!

I know I keep saying this lately but the DD Brochure is getting very close to be finalized. We are all so excited and I cannot wait for it to be available to everyone.

Hope your doing wonderful...miss you lots!

You take care sunshine and be well....always here if you ever need me or anything.

HUGE LOVE and KISSES from me to you!


08/04/2012 05:59 PM
Nicole1
Posts: 6
New Member

I assume you have all the photos need by now. If you don't, well I have no problem sending you some of just about anywhere on my body! I have syne rather pronounced lipomas and ” Jodhpurs” and lipomas on my feet, ankles, shins, calves, knees, thighs, arms, even under my chin. I would gladly supply all the photos you need, just say the word.

So exciting about the brochure, I had no idea, I hadn't logged on to FDRS fur awhile and I'm so glad this is being done. Thank you for your hard work and dedication to this project.

Nicole Wagner


08/06/2012 01:31 PM
looney44
 
Posts: 157
Member

Ohhh - you are my HERO! I can't wait...I'd give you all the pics you'd want, but mine are very small (bubble-wrap is what I call them...I think Grandma's definition would put me as "type 3" - if you need someone who looks "normal" but in a lot of pain, I YOUR MAN! Smile ).

Anxiously awaiting your final product.

Looney

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