Saturday, October 20, 2012

The "Legacy" Continues...

About a week ago I received some good news to balance out the bad news we had received the week before. The good news- my calcitonin levels haven't risen in the last eight months! I was so very relieved to hear this as I'm sure other Meddies can understand.

The odd thing was that I was on the verge of having a panic attack waiting to hear these newest results which is so very unlike me. I have NEVER had anxiety about my results before even if I knew they would be bad! Come to find out, my TSH levels were high and my Endo said that can cause anxiety. That might also explain why I've been having such gory nightmares lately too! Lol

Bad news was that my oldest child (21 year old son) got the results of his 24 hour urine test and we are finally at a point where he needs to have surgery for the Pheochromocytomas that are forming. It breaks my heart that my children have to go through this too but thankfully he has a mama who has educated herself on this who will help him through.

My son has decided to have Dr. Jeff Moley in St Louis do his laparoscopic Pheos surgery. This is the man I wish I had asked to do mine and I know in my heart that he will make sure my son doesn't end up messed up like me.

Big B will have the surgery after the New Year when him, his fiancé, and I will drive to St. Louis. I'm honored that at 21 he still wants me to be a part of this.

In other news- my Endo had me quit my 2 liter a day habit of drinking soda which cut out all caffeine and most sugar for me (yes, I've been a real bitch this week!), my Fibromyalgia is behaving itself, my Peripheral Neuropathy is getting worse all the time, and I think my Costochondritis is actually Tietzes Syndrome due to where my pain is located. The other 2 million diagnosis' I have really don't bother me much so they're not worth reporting.

Ahhhhhhh the life of a messed up MEN2a Meddie....gotta love it! Lol

Thursday, April 19, 2012

To Everyone Who Has Contacted Me...

And not received an answer, I just want to tell you that I am NOT ignoring you at all. I have recently found several emails that were missed in the high volume of mail that my tjcoiner and JoBurzycki accounts receive and I am so very sorry for that. I've also just found out that I should be hitting "Other" when checking messages on Facebook as well because I found several in that folder today. Again, I am sorry.

I want you all to know I appreciate you reaching out to me and sharing your stories. They ARE important to me and know that as I read through the mail I am thinking of you, sending healing thoughts, and looking forward to getting back to you. I'm ashamed to say I even found one email from 2010 in the mess.

So please know. I AM listening and I DO care. Obviously Yahoo and Facebook doesn't though. Lol.

Wednesday, February 08, 2012

Goodbye and Love to Susan/WhyMommy

It is as always with sadness that I tell you we have lost yet another amazing woman to her fight with cancer. Susan aka WhyMommy of Toddler Planet fame lost her battle with IBC (Inflammatory Breast Cancer) on February 6th, 2012.

Susan was and will always be an inspiration to so very many women. Not only did she fight her own battle (through multiple recurrences) but she was also an advocate for woman, a scientist, a renowned blogger, and just all around amazing person. My own experience with her showed her to be helpful, kind, patient, and caring. I feel honored to have known her even the little that I did.

My heart and thoughts go out to her family. Nothing can take away the pain of your loss but know that Susan will be remembered by so very many as the wonderful person she was.

I would like to end with her mantra that is posted on her own blog

"All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others.  For these are the only things that will remain." ~Susan Niebur