Mayo Clinic for Dysautonomia Conclusion

The week of many doctor appointments was over, I was emotionally and physically exhausted but I was heading home. After a few days at home getting back into our routine and catching up on “vacation” laundry I received the summary of my week from Mayo in the mail. I will give you some of specifics of my testing in order to tell my story but in no way encourage the sick chick contest. The truth is people are individuals and we all have different baselines of our own personal normal. On to the test results, don’t worry; I won’t bore you with all of it. These are just the likely diagnosis after each test and a few highlighted comments. * Vestibular Test (Make You Dizzy and See What Happens) Diagnosis:...

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Mayo Clinic; Testing, Testing 1,2,3…

So my first appointment at Mayo had me in a little bit of a mood, then having to hang out for another day waiting for our insurance to authorize referrals left me a bit… well ironically, anxious. We did get out around Rochester Tuesday, a burger place called Newt’s where things you haven’t imagined are happening. After a great lunch I was back to work. I called my insurance company, they told me I needed to have the referrals sent to my Primary Care Manager. I then called my PCM let them know to be on the lookout for the referrals and to submit them ASAP as I am sitting around in a hotel waiting. I then call Mayo to make sure they have the best numbers to reach my...

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Mayo Clinic Day One

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… I was there; all my paperwork filled out,...

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Teri’s life with Dermatomyositis; Rare Disease Day

I am always amazed with the people Dysautonomia has brought into my life, people I would not have met or had the chance to get to know without having my own illness; amazing people. Teri is one of those amazing people and like many of us she wears many hats. She is a wife, a mother, a daughter, and even a grammy. She is also an infusion nurse and I am lucky enough to say that she my infusion nurse. Teri also wears the hat of patient, she suffers from a rare disease called Dermatomyosis. Teri is a FIGHTER, she fights everyday for her health and the well-being of others. I was thrilled when Teri agreed to answer a few questions about her life with dermatomyositis on Just Mildly Medicated for Rare Disease Day....

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Sarah and Alice Eloise; a service dog team

I am so happy to have a guest post from Sarah of Sarah Kate’s Silver Linings on her experiences with multiple complicated health issues and how her service dog, Alice, has helped. I always find it funny when someone will refer to me as brave  because of the things I have faced with health issues, as if there was an option and I chose to be brave, so with that said I will try and refrain from calling Sarah brave but I will say that Sarah handles her health issues with a grace that is well beyond her years. I have learned a lot from this gal and she holds a special place to me. So heeeeerrrreeeesss Sarah!   I know a bit about your health issues, can you share with...

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Books Books Books

If know me in real life or if you’ve hung around my Facebook page you know I love to read.   I am that gal that you could ask any day of the week any week of the year and I can tell you what book I am currently reading. So what is my favorite book? A question you’d think I have a steadfast answer to but in fact it’s the opposite. It’s a question I  break a sweat over. How could I chose A favorite, that would be unfair to all the other favorites… I loved the Yong Adult dystopia trilogy Razorland (Enclave, Outpost, and Horde) by Ann Aguirre. Now it is true that my Young Adult favorites change and I am likely to love the most recent ones I...

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Kat and Beau, a Dysautonomia Service Dog Alert Team

As I sit on a wait list for a service dog I have become more aware of the ways my own life will change when my match is ready. Not just the excitement of the call or the trip to meet him or her but also the changes that having my own canine partner with me will bring.   I am lucky enough to be part of a large social network that gives me the opportunity to connect with so many people. Kat is one of the people I have connected with and she has been kind enough to share her journey with me and now with all of you.   Thank you Kat!     I know you suffer from Dysautonomia but the illness can be so different from...

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Being thankful when you are chronically ill

“At least you have your health.” It’s an innocent phrase used as a ‘look on the bright side’ when talking to someone who is down on their luck. What if the person doesn’t have their health… what if their health has them by the proverbial balls? This time of year everyone around me is focusing on what they are thankful for, it also figures I am in a gastroparesis, fibromyalgia and chronic fatigue flare on top of a cold. This means while the kids are bringing home drawings of turkeys, talking of feasts, and everyone is listing the daily things they are thankful for I am living off of broth and crackers, in pain as if I were training for a marathon and lethargic as if I just ran one....

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GP friendly potato soup recipe

Now I am no foodie. The idea of following specific directions and having a finished product always appeals to me but *Dysautonomia causing me to not being able to stand for very long and never knowing how I will feel makes cooking low on the hobbies list. The new diagnosis of *gastroparesis explained some of my other food related issues. I love the eating part but every time I ate I had terrible stomach pain and bloating. Now that I am working to find GP (gastroparesis) friendly foods and am getting back to eating well for me I will share things that are working. *Dysautonomia (or autonomic dysfunction) is any disease or malfunction of the autonomic nervous system (ANS). *Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a partial paralysis of...

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What to do with extra Halloween candy…

Yes, most dentist offices will run a ‘sell your candy back’ plan and I fully support the idea. I also think making memories while getting rid of the candy is the best plan of all. Now if you are hanging out here on Just Mildly Medicated through a search on gastroparesis you should know right away that the sad sad truth is this is NOT GP friendly… it’s for the kiddos not the mama. So let the mom forced family fun begin!! You’ll need some chocolate flavored Almond Bark, bananas (apples, pretzel rods or anything else you want to cover in chocolate), some left over Halloween candy bars. I used bananas so I also needed popsicle sticks. I cut the bananas in half and put wooden popsicle sticks in them...

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