Friday, January 27, 2012

Why I went to Mayo Clinic in MN by Dr. Diane Dike

Paul and I asked ourselves that question several times before we left and in the 10 days we were there.

I went to the Mayo Clinic in MN because
1. My Neurologist told me he found indications of MS and optic neuropathy that can lead to blindness. He did his internship at Mayo and has been trying to get me to go for 2 years.
2. I get sick and tired of being sick and tired. So to be sure I'm NOT missing something to improve my health, treatment options or find a cure I keep trying.
3. Wanted to make some connections for our Cryoglobulinemia Vasculitis Organization (CVO).
4. I’ve been experiencing symptoms of Waldenstrom macroglobulinemia and Multiple Myeloma cancer.
5. AZ & FL These warmer clinic locations do not work with this disease for initial visits.

What was it like?
Amazing and awful!!! 
Some doctors and staff were fantastic!! Some needed to take lessons from Gracie's vets on bedside manners.
The vasculitis/rheumatologly, opthamology & colonoscopy-endoscopy staff/departments were exceptional. 
They were loving, encouraging and amazed at what we have overcome. They thought the therapy tub, the service dog (Gracie) and the wheelchair were creative ways to thwart dangerous flares. They encouraged me to keep it up and go for my dreams of helping children and learning to drive with hand controls.

However, some doctors acted ignorant saying, "What do you want me to do? You know more about this disease than any of us." When one saw my dreams for foster care he said, "Don't you think you ought to get yourself healthy before you start trying to help others?" To which I replied, "It's been 22 years. If I wait, I will not accomplish very much with my life! Helping others keeps me alive, full of hopes and dreams." He was rude and didn't understand, shrugging his shoulders. Another suggested I had enough problems? Since there is no cure for those two cancers what's the point? Finally, the very first doctor in charge of coordinating my case told Paul to be quiet. We were answering his questions and he said he couldn't listen to two people at one time. When a caretaker is in this with you they need to be heard. His words and actions were totally unacceptable to me. Another patient suffering from stroke like issues was told "maybe you just need to get off the couch." It is obvious that he doesn't belong in medical care.

They could get better and more organized. 
Why did they wait until I got there to make a plan? I'd spent 3 months getting all records to them so they could get me into all the specialist during my stay. Instead, they waited until I arrived which gave me appointments until March 23. We couldn't stay that long and had to go to all the departments and sit and wait for hours/days to see if they might be able to fit me in. That resulted in exhaustion, being there from 7am-7pm, and NOT seeing the specialist who might have had some experience with this rare blood disease and getting proper follow up tests done, ugh! Consequently, the internist in charge of our case was unable fit me in the last day to do the final review. We'll have to wait for him to send his notes and reports in the next 6-8 weeks. 

Finally, they put 4 IV's in and took them out after each procedure. Couldn't they have made a plan to get all the work done that needed IV's so I'd only get poked and bruised once? Not to mention the extra costs to us for unnecessary duplicating.

No answers were achieved in finding a cure, relief or help for the cryo or it's harsh symptoms. No connections to experts were made for CVO. The two forms of cancer were not completely ruled out. 

*The optometrist did NOT find optic neuropathy! 
*Blood tests indicate that my vital organs are holding up well! 
*They burnt a pre-cancerous spot off my ear!

Basically, we are doing everything we can to manage this disease. At this time there is no help or new ideas to improve my situation. We will just have to stay creative and do the best that we can. It's not the life I dreamed of but it could be worse! I'm not about to let it keep me from fulfilling my God given destiny! God is sufficient and giving the strength for the battle.

I wouldn't change meeting all the incredible people, singing, hugging and praying... giving the books and babies away and connecting... At times, it seemed the waiting rooms were waiting rooms to Jesus with the stories of illness, pain, suffering and impending death but there I was in the mist of it with an opportunity to love, encourage, listen and sympathize. Keeps me holding on to scriptures like 2 Corth, 4:17, "For our light and momentary troubles are achieving an eternal glory that far outweighs them all."

Do I get down, discouraged and sometimes depressed? You betcha. I need verses like Proverbs 3:5-6, lean not on your own understanding... because I do not understand. But He says I can do all things through Him so I hold on to His word. It helps me persevere and keep the faith, hope and strength to be courageous no matter what!

I'm so thankful for Paul and Gracie and for you!! I'm ever grateful for your kindness! Thank you for caring, sharing and for your prayers! God Bless YOU!
Stay Strong and VERY Courageous!
Diane xxoo

Isaiah 40:31 ...but those who hope in the Lord, will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.


Anonymous said...

Aw Sweetie, I wish more could have been done! You are an inspiration, though, and it's wonderful to see so many people touched by your and your circumstances. No telling how many lives were changed because of the chance to meet you, Paul, and Gracie! God bless and keep you! Love you, Debbie Brockett

Unknown said...

Thank you my ever encouraging lovey!!!! Love and appreciate you sooooo much! xoxoxoxo

Stay warm.... is summer almost here? xoxoxo

God Bless and thank you.

Paul will be sharing from his perspective so stay tuned... it's sure to be interesting!! teee heeee xo <3

prayeradvocate said...

It shouldn't be that a princess be treated that way! I am so glad that your Father, the King of kings, keeps you safe, encouraged, strong and courageous!! What a bright light and flavorful salt you are to all of God's creation!! I know many hearts were changed and many seeds planted for the Kingdom of God! God promised His Word will not return void. Praying for answers in the Internalist's report in 6-8 weeks. I love you sister!

Shelley Brandon said...

I'm so sorry that you were subjected to such ignorance and lack of organization Sunshine. Kinda brings out the Momma Bear in me.... makes me want to go and kick some serious booty - in the most loving way possible of course :) You are quite the pioneer Mrs. Dike! Love you tons!

Unknown said...

Just added the rest of the pictures Paul took to the Facebook Mayo Clinic photo album.
Thanx for caring and listening... I hate to say anything but ALL GOOD NEWS but the truth is the truth! xo :D <3 Love and Appreciation!

Trisha said...

It is obvious that your love for the Lord is what keeps you strong and courageous after all you have had to go through at Mayo. I know how hard you worked to make sure everything was ready for those doctors. It is just WRONG of them to have been so unprepared for you. I believe in God's healing powers and He can do so much more than any doctor. That is my prayer for you my dear sister in Christ. Love you so much. xoxo Trisha

Unknown said...

Amen! Thank you for the compassion and understanding to my frustration (s) and weariness!!

I do believe God can heal me... I try to be ready in case He wants to do it through one of His gifted people on earth.
Love and prayers.

Steph said...

Thank you for telling us the truth...we can better pray for you and Paul that way. Even in the midst of so much disappointment, aggravation, and downright mean-ness, you were a light and broguth hope to the hurting...the King saw it all, and you blessed HIS heart more than anyone's. Your suffering may continue here, but your blessings continue to accumulate in your true home. I love you. I am blessed to know and love inspire me again and again. Hugs and kisses to you, Paul and Gracie. Mom and I are gonna come and see you soon!!!

Unknown said...

AWWWWWWW thanx Steph!! Ditto back at YOU!!!

I love you too!!

Thank you for letting me be truthful and not have to pretend it's all fun.

I can't wait to see you all! LMK

GOD BLESS U!!! :D xoxoxoxoxoxoxo

Terri said...

I am so happy and thankful that I had the chance to meet you and Paul and Miss lil Gracie herself during the 10 days of being at the Mayo Clinic also. The first day at the Mayo was quite an experience with all the tests to have to get to done. I remember the first time we passed each other in the subway. We all looked so confused on which way to go but our smiles toward each other told me that God sent us here for a reason not only to find an answer but to find friendship with others that have health issues that not everyone understands what it is like. It was wonderful to have friends like you, Paul and Gracie to share our feelings with. You are a very strong encouraging woman "don't ever lose that hope in yourself and God" he is the one that knows what you want in life. Your dreams are yours and if you can fullfill them "Go For It" they are your dreams. You have come a long way in life already and you have the best support a person could ever want, Paul, Gracie, God, family and your friends. I love the photo of us both at the Mayo, thank you that was a tough day for both of us, spending the time with all of you was an inspiration. God bless you and thank you for being such good friends.

Unknown said...

Hi Terri!
I wrote a message from my phone that didn't post??

Thank you for checking in. I treasure the time we had and the gift God gave me in meeting you and your sweet-fun husband!!

I so look forward to hearing good reports of your tests and hope to see you again soon. For now we will stay in touch on our Facebook pages.

Thank you for being U!! xo ♥♥♥
Stay Strong and Courageous!!!
Diane :D ♥♥♥

Mary said...

I have I college roommate who lives in another town who went to the Mayo Clinic for help with her extensive rheumatoid arthritis and unfortunately, had a similar experience. She will never go back either and I cannot say that I blame either of you. There are plenty of improvements to be made and unfortunately, a lot of what happens in the depts depends largely on the physician in charge of it and what kind of standards they set much like many other clinics all over the USA.