Archive for March, 2014

Mayo Clinic Day One

March 20th, 2014 by Carrie, the Just Mildly Medicated gal

I know I’ll be asked a few times from fellow Dysautonomiacs if I recommend going to the Mayo Clinic. That is a tough question and one I will try to answer with both the pros and cons of my experience after I write about what each day was like. I do ask you to keep in mind that my experience is based on just that, my experience. The way a referral is accepted (going straight to a certain department verses the Mayo Clinic general), how your insurance company processes referrals, the communication and rapport you have with the doctors you see, and how you are feeling health wise the week that you’re there will all greatly impact your experience.

Mayo Day One…

mayo1

I was there; all my paperwork filled out, my medical book records and CD copies of tests, a list of both symptoms and questions in hand, and all of my prescription medications in a giant zip-lock bag. I am ready to get my first of many gold stickers of the week for being knowledgeable about my condition, prepared, and following directions.

When I am called to go back it’s all the normal stuff; BP, weight, medication list, etc. However she reminded me instantly of Ferris Beullar’s teacher. When she asks about meds I pull out the paper I just filled out and let her know I brought all the prescription bottles (because it says right on the first page of the 10 pages I filled out that I needed to have them with me). She gets to typing; well not really, she asks me each medication “So you take such and such medication?” “So you take this dosage?” “So you take this medication at this time and that time?”

Now I have to admit I am one of those no chatting let’s get moving kind of people, and I am here at the All Stars for sick chicks. LET’S GO LADY. So I repeated after each question; “Yes, just like I filled out on the paper there.” Inside I was saying; “Are you kidding me? I filled this out in the waiting room, nothing has changed…”

TIME FOR THE DOCTOR

I’ll admit I was very close to a high five or even slapping him on the butt and yelling; “THIS IS GONNA BE A GREAT WEEK! I’M SO EXCITED TO BE WITH MY NEW TEAM!” He didn’t seem like the kind of guy that would appreciate a butt slap and yelling so I opted for a more traditional handshake.

We got off to a rocky start, we just weren’t connecting. He wanted to scratch the tests I’d previously done and anything I had learned about my condition. While I was fine with this clean slate idea conceptually I did have issues with the practicality of this approach, I am here for 5 days only and I wanted to make the most of it. How was I going to get to the nitty gritty of understanding the specific type of dysautonomia I had if we were back to establishing IF that is what I have? It isn’t that I am so emotionally attached to my diagnosis, something I was accused of being, it’s that I had all this information with me that led to this diagnosis, some done more than once, and we weren’t going to look at it?

Dysautonomia can be tricky, for example someone with POTS (Postural Tachycardia Syndrome) can have a normal Tilt Table Test one time and a very drastically different Tilt Table Test the following day. One of my doctors outside of Mayo who lives with gastroparesis understood my frustration; the first time he had an empty gastric study it was normal and then later he had a second and third that confirmed gastroparesis. I had a hard time letting go of the work that my doctors (and I) had already done to get to my diagnosis. I wanted to build on what was already there and find out more specific things like narrowing down what type of Dysautonomia I have since there have been a few discrepancies from different doctors, not reinvent the wheel.

Okay, I am channeling my inner… whatever the white haired sister on Frozen’s name is and let it go…

This doctor is navigating me through my Mayo experience but I am still navigating my health, this is a week of tests and experiences… (breaking into Let It Go in my head again)… “Umm wait, what did you just say!? My autonomic issues are because I am stressed… anxiety, did he just say PTSD??” Time to come out from my Frozen brain and pay attention.

So we did an Abbott and Costello routine, here it is very paraphrased.

Me “I am not saying that I don’t have an issue with anxiety or even PTSD for that matter but I’m not sure that is the bigger picture with my autonomic system. I mean would that cause hypovolemia and gastroparesis? I only ask because we looked at anxiety several different times and still ended up at dysautonomia.”

Doc “You’re supposed to forget what you’ve been told. You’re probably having a physiological reaction to stress and anxiety or possibly migraines.”

Me “I am not saying that I don’t have an issue with anxiety or even PTSD for that matter but I’m not sure that is the bigger picture with my autonomic system. I mean would that cause hypovolemia and gastroparesis? I only ask because we looked at anxiety several different times and still ended up at dysautonomia.”

Doc “You’re supposed to forget what you’ve been told. You’re probably having a physiological reaction to stress and anxiety or possibly migraines.”

So after some sit down, stand up, sit down, lie down, stand back up, and sit back down one last time my time was up. The good doctor typed some things in the computer, and yes… that part gives me anxiety because whatever he types in there will follow me to each and every doctor I will see here.

Okay, so my first appointment wasn’t what I expected in my utopia Mayo dreams. You can tell it was a tad disappointing, my poor husband had to listen to me start a conversation out-loud at some random mid internal dialog for the next 24 hours; “…I mean really? I brought the Tilt Table Test, the Stress Test, and those notes…” “…it’s not like he ever even answered my questions.” “…we already looked into anxiety disorders…”

This went on for the next 24 hours because that is how long it took for my insurance company to approve my referrals…

Next is the testing phase  at Mayo, you can also check out some other posts from the Just Mildly Medicated gal.

Disabled, Mobility aid, and Chronic Illness…

That crazy Dysautonomia thing I keep talking about…

5 Things to Think About Before Saying, unless you’re just an ass…