Sunday, March 2, 2014

Back From the Clinic

I am back from the Mayo Clinic and this time around we had a very short trip. I went last summer and was there for almost a month. We left with no answers and felt very defeated and disappointed. I went home and reviewed my records, did a genetics test and did more research. I was very determined to continue to move forward. Many people make several trips out to Mayo. It's not ideal, but you can't get it done in one trip, especially if you're a medical mystery.

I documented my symptoms everyday (filled 5 notebooks!) and then drafted a letter to a few of my specialists at the end of January. They both agreed that I needed to go back to be re-evaluated. I was very fortunate to get referred to the connective tissue disease clinic and get Dr. Osborn. He was very thorough and he helped narrow it down to a connective tissue disease. It is still a work in progress, but I feel like I am moving in the right direction. He also said it's possibly Sjogren's, but we're still not sure. I am going to do the new test (Sjo) and will give you an update on this later.

It was very bitterly cold. And yes, that does say "feels like -34". I am glad I didn't have to stay too long in that weather. I did want to get more done and was planning on being there for at least a week, but you do what you can. It's never going to be convenient anyway... obviously because why would I go to MN in February during their worst winter?! It may not be my last trip out there, but that's the way it goes. I have to do everything I can to get better.

At least you can do a lot of things long distance. The doctors will continue to work with you and any of your local doctors. I have to rebuild my team of local doctors, so I am relying heavily on working with Mayo and going at it alone. There are a lot of people who can't believe that I go all the way out there for medical care when we have doctors here. It's very difficult to get anything done around here and it's hard to find great doctors. It's even more difficult to find doctors who are experienced enough to work with  you when you are a medical mystery. Mayo has a pretty efficient system and they try to work together. They can access the same system and that is very helpful. But mostly, they are fast. If you have blood work done, they have it processed and posted to your account within an hour. Scans are usually processed in 2-3 hours. You can get a referral and sometimes see that person the same day. 

It's been bittersweet. I think this is my year though and I am going to continue to push forward.

Any challenges you are currently facing?
What are your current goals that you're focusing on?


  1. So you're really a medical mystery? I hate never for sure knowing my psychological issues, since we don't fully understand the brain. But this is way different! I hope you're okay. <3
    I bet you'll find the answer, and the cure. c: Best of wishes girl.

    Challenges that I'm facing? Ugh, finding a job that I can manage to get back and forth to. My current goals I'm focusing on are to enroll in a circus arts class, find a job, and get my drivers license.


  2. One thing I learned especially with the doctor is you have to be your own advocate. I hope you feel better soon and you are survivor.

  3. Wowza thats cold! And I admire you for pushing on and fighting for a diagnosis- I think a lot of doctors nowadays just want to throw a Rx at you without even looking at you.

  4. Sorry you're going through this! I'm sure they appreciated all of your legwork to help them.

  5. Yes, I have been for about 9 1/2 years now. I always have inconclusive lab tests and a random collection of symptoms. I'm going to fight to the end!

    I think you'll accomplish everything. Just take it one step and one day at a time. Thanks for your kind words.

  6. Yes, that is so true. On rare occasions, you do find doctors who go above and beyond, but it truly comes down to you and what you are willing to fight for. Thank you so much!

  7. Thank you, Krista! I agree, a lot of doctors want to push you out of their office so quickly or push you off to someone else. It's worth trying to figure out the root of the problem. So many doctors early on wanted to just focus on the current symptom and mask it with medication. They didn't want to figure out what is causing all of this to happen.

  8. They do appreciate the organization and self-advocacy. Thank you!

  9. sorry to hear about your medical mystery. the most frustrating part of seeing a doctor is leaving with questions and an unsettled feeling. i hope you find answers this time around with the mayo clinic. i'm just trying to stay organized around here!! take care.

  10. They're not being very helpful at the moment. It's probably time to move on and find new doctors. That always seems like a never ending cycle.