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.

Conclusions

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. 

GOOD NEWS: 
*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!

Please visit my Facebook page to enjoy pictures taken with patients and new friends!

Stay Strong and VERY Courageous!

Always, 

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.