Posts Tagged ‘Dysautonomia’

Adjusting to life with a Service Dog

June 11th, 2018 by Carrie, the Just Mildly Medicated gal


<insert LL Cool J voice>

Okay, so it actually is a comeback. Those of you that follow me on other social media platforms, mostly Instagram, have an idea of how drastically my life has changed. It’s long overdue for me to share because a lot has happened, like adjusting to life with a service dog. So much time has passed, and I am going to try and update you slowly. The update I think most people want is about having a service dog to alert to Dysautonomia. It may not be what you expect though.

Adjusting to life with a Service Dog:

Let’s start with the ever adorable, super smart, strong willed, and hardworking service dog Winnie!

Winnie after receiving her Canine Good Citizen

I really thought when I left for what the service dog program I went through calls “Team Training” I would start blogging again to share my experience. The problem was I didn’t have much good to say about my experience. I was literally paralyzed by the idea of sharing what I was going through. It may seem like it but I don’t have strong feelings about the specific organization. There are no rainbows and recommendations, but there is also no slander campaign. I won’t be naming them; however, I also won’t remove previous mentions of them. I am personally disappointed in my experience and professionally neutral because my experience was mine and many others have very different feelings. They also seem to be going through some significant changes and I look forward to hearing how that impacts the program.

Let me tell you about madam Winnifred. This dog is so smart, her puppy raiser family showed her so much love and positive reinforcement that she has been able to work through a lot. However, there was a time, last September specifically, that I had actually prepared to be bringing her back early December.

We did not connect well during our Team Training, she is very strong willed, and she had decided while she would alert to BP and HR fluctuations, she would not soften her heart to me. She didn’t trust me and refused to relax into me. She was barely going through the motions and it was obvious… and heartbreaking. To make matters worse, she is a vocal dog, something I had not expected in a service dog. I’ve had vocal dogs before, but it was in excitement, Winnie was vocal in her general annoyance at the world. She grumbles, sighs, huffs, and the almost deal breaker, she growls.

Our early days of Alert & ignore

I had always understood all of her vocal sounds as negative, and honestly, I still do. With the guidance of an amazing trainer once we got home I started to understand those vocal sounds are her way of telling me how she feels about a situation. After learning more about her communication I better understand what she is telling me, thus changing the way I handle certain situations. Now she is far less vocal because she isn’t put in situations where she needs to tell me her grievances.


Yeah, in part I still feel that way, however, she is a living being and if she has a strong opinion about her work life I am okay with, quite literally, hearing her out. The saving grace in our relationship has been that the more willing I am to hear her out the fewer opinions she feels she needs to share.

Winnie and I were so much more in synch by the time December came that I saw a future for us, a real working partnership. Having a service dog is a bit like an arranged marriage AND having a really smart 8-year-old with you at all times. It has taken some adjusting on my part that I hadn’t expected.

We had a rough start, but a year later, we are a strong team and she is not only incredible at her job but is very affectionate. I imagined us seeing each other for the first time and both falling instantly in love and her doing everything I asked of her right away. Real life was different than my expectation, as it usually is.

Real life with a service dog was very different than I expected. It was much harder in the beginning than I could have imagined, and more rewarding now. Stay tuned, I’ll be sharing some about our training soon.

Checking out some zebras

Fitness with a chronic illness

February 19th, 2016 by Carrie, the Just Mildly Medicated gal

Fitness with a chronic illness, I didn’t think that was an option!

I took almost a year off from Just Mildly Medicated. I posted occasionally on the FaceBook page and kept active on Instagram, but not the blog. I’m not sure you missed me, sometimes when someone stops showing up that happens and it’s okay. I am going to be back. There are multiple reasons I am coming back, mostly because I still need to share my journey.

When I left you I had started cardiac rehab. I was a reluctant participant at the beginning and was frustrated when I would really try only to be hailed down by a nurse and told my heart rate was too high and slow down, but I kept showing up. In my last post I said this to you on the concept of exercise making me all better.

“Unfortunately eating mostly whole foods, exercising, and loving the heck out of me, as well as everyone around me, is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and its issues, instead of fighting my body or hating it.”

That is all still holding very true. I am happy to report that I am still working out just about every day. If you have been following on Instagram you’ve seen the time I am putting into this. Here is a before and after. The blue dress photo was from March, pretty much when I disappeared from the blog-o-sphere, the pink top is from a few weeks ago.

March 2015 January 2016

March 2015                       January 2016

No, working out is not going to fix chronic illnesses that are not after effects of poor health choices. Yes, working out can make you stronger and more secure… and I mean literally more structurally sound. I wasn’t doing myself any favors, physically or mentally, by being afraid of moving. Starting was so slow it was nearly embarrassing. Who am I kidding, it was embarrassing, but progress was made.

Is my blood pressure not dropping from Orthostatic Hypotension? Well, yes, but less frequently and the strength I now have in my muscles is very helpful in keeping me up a little longer and getting to the ground slowly. Is my heart rate normal now instead of jumping all around when my I stand up (POTS)?  It can still be unpredictable but the work I have put in has made the overall time for it to return to normal much shorter and overall it happens less often.

Am I saying working out will “fix” you? No, because truth be told it just isn’t. Am I saying working out can help you become physically and mental stronger? YES, yes I am.

I believe this so much that I am currently enrolled at the National Academy of Sports Medicine so that I am able to help others by being a personal trainer. My local gym has shown specific interest in my progress physically and throughout my course. They are excited to potentially have someone on their staff who, quite literally understands, what it is like to balance health and illness.

It isn’t often that I am all positive mushy mushy, but exercise has made a huge positive impact and I just want to pay the fitness forward. If you have been thinking about trying cardiac rehab I urge you to go, it literally changed my life.

Hey, lets connect on Facebook  <~ just click it

and I am active on Instagram <~just click it

Twitter is beyond me so we’ll just skip that one

Katya on Life with P.O.T.S and R.I.S

September 8th, 2014 by Carrie, the Just Mildly Medicated gal

I am always surprised by the connections that I have made through my chronic illness. Katya is one of those connections. I am happy that Katya was willing to share some of her life with *P.O.T.S as many who suffer with the condition are teenage girls. Katya is a 16 year old who has been living life with *dysautonomia for over a year now and I am glad she chose to share some of her story with us during Invisible Illness Awareness Week.


30 Things About My Invisible Illness You May Not Know

 1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome, or POTS.  I also have RIS, Radiologically Isolated Syndrome.

2. I was diagnosed with it in the year:

I was diagnosed with POTS at Mayo Hospital in Rochester, MN in the Summer of 2013.  I was diagnosed with Radiologically Isolated Syndrome in January of this year.

3. But I had symptoms since:

Before I was diagnosed with POTS, I had been having symptoms for at least a year.

4. The biggest adjustment I’ve had to make is:

I had to stop going to school last year because between doctors’ visits and medicine adjustment it became too difficult

5. Most people assume:

I choose to be antisocial when in reality I can’t go out or have people over because I’m feeling ill or am so fatigued I can hardly stand up.

6. The hardest part about mornings are:

Waking up to realize that another day of fatigue and debilitation await me when I step out of bed.

7. My favorite medical TV show is:

House M.D.  No doubt about it.  House all the way!

8. A gadget I couldn’t live without is:

My computer.  My darling little computer has helped me distract myself from the grieving of having a chronic illness.  Between Netflix and Amazon Instant Video I twisted the definition of “being social”.  From Downton Abbey to Real Housewives of Orange County, I created my own world when I couldn’t be part of the real one.

9. The hardest part about nights are:

When I lay my head down and begin to think about how I could have pushed harder or what the day could have been like if I wasn’t ill.

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

I haven’t tried any alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose:

This is a very tough and emotional question.  At the moment, I choose invisible because I am able to choose who gets to know about my illness and what I am going through.  Invisible illness also limits the amount of pity I would receive from strangers.

13. Regarding working and career:

I’m only 16 and I made most of my spending money through babysitting.  After a couple cases of being on the edge of fainting while trying to watch the children I had to give that up.  I loved the children I use to babysit and no longer get to see them like I use too.

14. People would be surprised to know:

Before I got ill I would run 6 to 10 miles every single day after school.  Running was my passion and my outlet.  I have had trouble finding something to replace it.  I doubt anything ever will.

15. The hardest thing to accept about my new reality has been:

That there is nothing I can do to fix it.  This makes me feel out of control.  It is hard to come to terms with the fact that no matter what you do you can’t change the way you feel.

16. Something I never thought I could do with my illness that I did was:

Go to Disney world with my family.  My dad pushed me in the wheelchair the entire time.  We also got bumped up to the front of the line of every rollercoaster.

17. The commercials about my illness: none

18. Something I really miss doing since I was diagnosed is:

The simple things.  Taking a hot shower (I have heat intolerance).  Going to the grocery store with my mom.  Driving.  Leisurely strolls.  Going to school.

19. It was really hard to have to give up:

The visions and plans I had for my life.

20. A new hobby I have taken up since my diagnosis is:

Collecting sock monkeys.  I take at least one of them on my medical adventures and take a picture of them and put it on facebook to tell my story from time to time.

21. If I could have one day of feeling normal again I would:

Run until I dropped.  I would go to watch my little brother play in his basketball/soccer games (I have missed so many of these).  I would jump up and down and scream and yell without fear of collapsing onto the floor.  I would go shopping with my mom.

22. My illness has taught me:

My illness has shown me how freaking naïve I was before getting ill.  I had no idea what chronically ill even meant.  I could not have even fathomed the pain and suffering that a chronically ill person and their family experience.  I am so blessed and so privileged to be able to relate with such warriors and heroes that are those who battle everyday with chronical illness.

23. Want to know a secret? One thing people say that gets under my skin is:

“I looked online and read that POTS can be cured by exercising.  Have you tried that?”  My response:  “Oh really, well I looked online and saw a picture of you captioned: Dumba**!”

24. But I love it when people:

Say things like, “I don’t know how you do it.”  or “How are you still going?”  It makes me feel like they’re acknowledging that this is a real, physical illness.

25. My favorite motto, scripture, quote that gets me through tough times is:

2 Corinthians 12:9

‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.’

There is nothing better than to hear that your pain is not in vain.

26. When someone is diagnosed I’d like to tell them:

Don’t avoid talking about your illness or brush it off as though it isn’t there.  Attempt to accept your illness.  It is never fully possible to completely accept your illness, it just isn’t.  But the more and more you work at it the happier you will be.  Do not let your illness consume you but remember and realize that your illness is a part of you forever.  Don’t fight this fact.

27. Something that has surprised me about living with an illness is:

The majority of people who are also ill or going through difficult situations.  I had no idea of the gigantic amounts of information and nitty gritty gossip I could receive by simply opening up to people about my illness and hurts.  As I began to do this people started to tell me all about their current and past troubles.  Opening up to people and listening to them while they open up to you makes for a much stronger and deeper relationship.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My mother fills my water bottle, makes me food, and massages my feet.  My mom does this on a daily basis.  I still don’t know how she does it.  Many people have brought me flowers, food, and gifts but there is no one who has comforted me and held my hand like my mother.  She is a blessing.

29. I’m involved with Invisible Illness Week because:

I have an invisible illness and Carrie from Just Mildly Medicated asked if I would do a guest post.  I am so honored to be part of this week because it is easy to get cooped up with my illness and forget the many other people dealing with their own.

30. The fact that you read this list makes me feel:

This gives me hope because if you care enough to read this then maybe others will and this will help spread awareness of POTS and Dysautonomia.

fight pots


Big thanks to Katya for stopping by during Invisible Illness Week!To learn more about Invisible Illness Week click the link ;)

*Dysautonomia- umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.

*P.O.T.S – a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing.

Touring Canine Partners for Life

July 1st, 2014 by Carrie, the Just Mildly Medicated gal

My tour of Canine Partners for Life

Canine Partners 4 Life


I have been on a wait list for a service dog trained at Canine Partners for Life for over two years. My wait has been longer than the average person as I am looking for a service dog that can both perform basic mobility tasks and also alert to my abnormal blood pressure and heart rate fluctuations. To add to the details in alerting we also need to have a service dog that is a poodle or low to non-shedding poodle mix, one of my children has an allergy to pet dander.


While on the wait list fora service dog, I have had the pleasure of making connections with other people who suffer from Dysautonomia that are partnered with service dogs. I’ve also met recipients for a wide range of disabilities that have received a service dog from Canine Partners for Life (CPL). I assumed that would have normalized the idea of a service dog and better prepared me for my visit to CPL. I am pleased to say my visit left me with a wide range of emotions and none of them were in the realm of normal.


We have had many family conversations over the last two years about the differences between a service dog and a pet, but even I was a bit excited when entering and seeing several service dogs in various states of relaxation near their partners’ feet. I have to say that CPL was amazing to my family; here we come in with three children under 11, all of us logically knowing what we are seeing but internally wanting coo over the view. They kept things moving, explaining things to the kids as we went, and answered all of our questions.


One of the first things we talked about was positioning and pacing, two things I never really considered before my visit. They had me walk with two dogs to see what my natural pace was and if I preferred the service dog side by side or ahead of me. Turns out I am a bit on the slow side, no real surprise there. I did originally say I would prefer side by side until I actually walked; as it turns out a slight lead was much more natural for me.


Here I am walking with Bandit

Walking with Bandit       Walking with Bandit

and this guy is Jasper

walking with Jasper


After some walking, which wore me out, we went in to watch an hour of Team Training. Team Training is the three-week course you participate in after you are matched and before you become an official team and head home. The CPL staff was kind enough to bring in a pup still in training an allowed to receive lots of loving from my kids while I sat with my practice dog for the morning, Jasper the black lab.


It was wonderful to be given a preview of Team Training and hearing how the recipients were faring after the first few days of working with their new service dogs. Some common concerns were bonding and worrying they would miss an alert thinking the dog was looking for attention. Ironically, while I was just on the outside of this circle of new recipients and their service dogs talking about concerns with alerting, Jasper went from relaxing at my feet to full attention and put his head in my lap. I patted him on the head and told him “down”; he did, but was right back up with his head in my lap. I must admit I was thinking, “Jasper, dude, you’re making me look bad.”


Jess, one of the trainers, came and told me that they actually knew Jasper had a tendency to alert. Wow, had I just been alerted? I took my cell phone out because I have a heart rate monitor app on it and tried to refocus on Team Training now that Jasper was back to lounging at my feet. Jess was in his sight now and I could tell he was focused on where she was in the room so I really didn’t think he was paying much mind to me.


Boy oh boy, was I surprised when Jasper and the top half of all of is black labness was across my lap! I started the hr monitor knowing I’d be higher than normal mostly due to a blanket of lab on me with gorgeous brown eyes making no qualms about looking me right in the eyes. My hr was in the upper 90’s, a common rate for me, so I chalked Jasper’s lap dive as he was clearly trying to make me look bad. Then all of a sudden the numbers started climbing. Within two minutes I was up to 140. I asked Jasper to sit and I reclined my wheelchair back. Mind you, Jasper was still looking straight at me, he nudged his head in my lap and then my 140 heart rate took a bit of a dive back in to the 90’s. At that point Jasper lay back down and I let the tears fall.


I realized that up until that moment I hadn’t truly believed my unpredictable heart rate could be alerted to. I had expressed this concern before to the CPL staff, to which they knowingly reassured me that some service dogs can alert to Autonomic instabilities. I even know people with service dogs that alert to these same issues, they have even written guest posts on this blog, but I had never until that moment believed it for me.


Jasper isn’t done with training, and sadly, he wouldn’t work for my family because of my sons’ allergies, but I do believe he will make someone a great partner. As for me, my service dog is out there. Maybe he or she is living with a puppy raiser right now, maybe he or she hasn’t even been born yet, but I have a new faith that I will have a partner just for me.


Canine Partners for life charges on a sliding scale. The cost for me when I am matched will be $3,000.oo plus the cost of traveling from Missouri to Pennsylvania and staying for three weeks. We are estimating it being around $5,000.00 for the trip in total. We are hopeful to raise at least the cost of the service dog and in the hopes of raising the cost for the trip in whole. We would be thrilled to raise more than my expenses and have a donation to Canine Partners for life.


If you would like to donate towards my service dog fund I have set up a You Care account to support my goals. The donation comes to me personally, and I will give updates here on Just Mildly Medicated and share links on the You Care site as we move forward.



Want to know more about Canine Partners for Life? Clink this link CPL.

Did you know Diane Sawyer arranged for my service dog? Check it out here.

WEGO Health; And the winner is…

April 10th, 2014 by Carrie, the Just Mildly Medicated gal

WEGO Health, and the winner is (this is where the drum roll should be)


Seriously …

I know, I couldn’t believe it either.

I was awarded the WEGO Heath Activist ‘Best Kept Secret’ Award. The awesome part about winning this particular award is that I may be a small fish in a big pond but the other fish think I’m doing something good here.

I always thought it was cheesy thing when nominees for anything would say, “It’s an honor just to be nominated.” I have to say it was just an honor to be nominated; it was pretty awesome that as a finalist I even received some WEGO loot!

WEGO Health Finialist
WEGO Health Finialist


In all seriousness it did mean everything to me. Before Dysautonomia (Orthostatic Intolerance and Postural Orthostatic Tachycardia) really raised its ugly had I participated in life in a way that at this point I am not able to.

In my 20’s I had a budding career with a nutritional company based in the beautiful Florida panhandle, I negotiated advertising for commercials and loved it. I loved living near the beach with my daughter, I loved my job, and I loved going out. I closed many a dance club in my 20’s.

Then all Officer and a Gentleman style I was whisked off my feet and away from all I knew by the man of my dreams. I became an Army wife. I worked from home for a while before we decided I would stay at home with our daughter and try to have more children. Between deployments and a few more babies there were many great options for volunteer work. When I was in the work force I had reviews, I had promotions, and bonuses, there were coworkers and lunch breaks. It was sad for me to leave that environment but I soon found the life of an Army wife had many volunteer opportunities and I loved them as much as I loved working.

When Dysautonomia started to impact my life daily I lost a lot of the things that I felt made me who I was. Once illness takes over your world shrinks. All of those things that bring achievement and social interaction became too difficult. The things I did without giving it much thought, things like showering, blow drying my hair, laundry, and cooking, those simple things became the big achievements. Let’s face it, no one is giving out gold stickers for a mom showering or doing the dishes.

An organization like WEGO Health giving acknowledgment to health activists is huge, but not only are they bringing those of us who are making attempts to raise awareness together they are supporting us, giving us the pat on the back and the gold sticker to help keep us going on. Just a few examples of WEGO Heath’s amazing support other than the Health Activist Awards are their Press Corps program where they try to help activist attend conferences to gain knowledge and be a more physical presence in the health activist community, and Health Activist Round Table discussions to help connect with others raising awareness with similar conditions.

Thank you for all you’re doing WEGO Health!

I have a few others to thank who have helped along the way. Of course my husband and family both near and far, they have been so very supportive and understanding, I am truly blessed. I’d also want to thank Dr. Randy Thompson, this man has shed so much light to every question I have had… and I have had more than a few. My friends who have listened to my story and shown support without pity, it really means a lot. My nurse Teri who deals with my nonstop chatter every week and has even shared her own story in a guest post. With that I’d love to thank everyone who has contributed a guest post on Just Mildly Medicated, there have been many and I have loved each of you. My online community of bloggers and admins who have shared my story; a few are The Maddness of Motherhood on Facebook, the hilariously witty sick chick over at Living with Bob (Dysautonomia), and my bloggy buddy over at The Pursuit of Normal who has been all a bloggy buddy can be!

Here I am, this is a famous as I get ;)

Wanna see my big win… I warn you, I was a nervous dork…

Want to check out some of those amazing guest posts, here are a few:

Shep’s 30 Q and A on life with hypersomnia

Kat and Beau, Dysautonomia service dog alert team 

Jodi on life with Lupus and Ankylosing Spondylitis

Sarah and Alice Eloise, a service dog team 

Roll Model Gear 

Mayo Clinic for Dysautonomia Conclusion

April 8th, 2014 by Carrie, the Just Mildly Medicated gal

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)


1. Multifactorial Dizziness

2. Orthostatic Intolerance


1. Appropriate candidate for vestibular and balance rehabilitation program

* Behavioral Health Standardize Assessment: (Mini International Neuropsychiatric Interview… and if that was the mini I can’t fathom the long version)


1. Possible Chronic Subjective Dizziness

2. Possible Generalized Anxiety Disorder; She is hypervigilant and a normal response of anxiety can exacerbate hypervigilance as to how her own body is behaving. It is possible that the anxious response could heighten the concerning sensations. She falls under conscientiousness which supports her hyperviligant mindset regarding experiencing symptoms.

* Endocrinology Lab

Everything was normal other than heightened norepinephrine levels were marked too high

*Autonomic Reflux Screen


1. Mild Patchy Postganglionic Autonomic Sudomotor Impairment with Cardiovagal and Adrenergic Function; these findings suggest sudomotor neuropathy but do not suggest widespread autonomic failure.

The QSART (Sweat Test) all of my sweat cells were well below the normal range. This surprised me because I feel like a sweat a lot                       but apparently it’s just my face that sweats a lot, awesome…

My TTT was considered normal, my heart rate increased 29 beats five minutes after being raised to a tilt with a normal BP                                       fluctuation, the Postural Orthostatic Tachycardia Syndrome criteria is a heart rate increase of 30 or greater, thanks body…

* Heart Rate and Blood Pressure Monitor

1. Basic rhythm was sinus with intermittent Left Bundle Branch Block. (LBBB)

2. Heart Rate varied from 66 to 147 over the 24 hour period with an average of 94BPM

3. Rare VPC occurred slightly, once in a pair and once in a 3 beat run of ventricular tachycardia, rate 111BPM

4. Rare SVPCs occurred singly and in a pair

5. ST segment analysis does not appear due to her LBBB

6. Low systolic blood pressure reading of 87/41 mmHg at this time ECG strip showed sinus rhythm, rate 77BPM

(I’ll have to ask for this translate into English)


Systolic Hypertension Intermittent with Tachycardia / Heart pounding and dizziness usually reported during times when HR and BP were increased

* Audiogram

Normal other than moderate/moderately severe drop at 6 and 8k (these are apparently the sounds of a cricket, so if there is a cricket zombie attack from my left side I might be in trouble.)

* Stress Test

1. Stress Test abnormal but non-diagnostic for ischemia due to LBBB

2. Severely reduced peak VO2

3.  Could be due to profound deconditioning (ass) though we cannot rule out some impairment of cardiac output

4. Peak BP 200/60

5. VO2 rise abnormal

6. O2 pulse rise abnormal

7. HR response resting 106BPM / 1 minute 151BPM

DRUM ROLL PLEASE… The final summary is…

* A mild Autonomic Sudomotor Neuropathy without autonomic failure

* Orthostatic Intolerance and occasional Postural Orthostatic Tachycardia was noted ; a vasodepressor response with no clear evidence of Primary Autonomic Failure

* The fluctuating heart rate during all postural positions in part might reflect intrinsic heart disease

The treatment plan was the same as my current plan just a different schedule. For example I take 10mg of midodrine 3 times a day, Mayo recommends I take 10mg in the morning, 10mg midday, and none or 5mg late afternoon. There were a few medications they would like to see me come off of but the Center for Autonomic Disorders feels they are the right medications for me.

I have a lot of information from Mayo that I can bring to my local team of doctors, mostly my neurologist (who I adore) and cardiologist (who I have already broken up with so now I need to see if we can get back together or find a new one).

My feeling and opinions…

Overall I was disappointed. Most of this information reconfirmed things my previous doctors already knew. My main doctor wanted to start from scratch and ignore my existing diagnosis instead of using it as a starting point even though I had a multitude of testing summaries and disks of imaging that confirmed it.

While the pro to this was a true new set of eyes not tainted by a possible wrong diagnosis, however it also left no time to look at things like getting a new opinion about treatment for my gastroparesis because I was busy being evaluated for things I don’t have much of an issue with; like ruling out migraine and inner ear issues.

I was hoping to find out why this was happening to me, what exactly was causing it, and if there was a treatment option I haven’t explored, it may be that those aren’t answers I will ever have but I felt like my priorities and what I wanted from my experience didn’t match my specialists so it didn’t matter much.

I did learn a few new things regarding cardiology. My current EP Cardiologist basically wrote off most of my cardiac issues on my autonomic system. The Neurologist and Cardiologist at Mayo felt many of these issues were separate from my autonomic system and needed to be reevaluated (hmm, I see a new cardiologist in my future).

The question of the month has been if I recommend going to the Mayo Clinic…

UGH! I’d say that is incredibly unique to each person.

I hoped Mayo would be some medical utopia where I would find specific answers. I imagined a doctor who was going to be very knowledgeable about my specific ailment and empathize with how scary the symptoms are; much like I saw from the doctors at Vanderbilt in the Mystery Diagnosis segment on Linda Smith that I recently shared on my Fb page. (If you haven’t seen it I will include the link at the bottom). I was disappointed when I didn’t feel that was the case for me.

Do I recommend dysautonomia peeps going to Mayo? Yes but only if and here are the if’s…

If you can see Mayo as an option to conform medical issues and possibly find more information I think it is a wonderful option.

If the trip itself doesn’t pose a large financial strain I do think it is worthwhile.


If you’re traveling to Rochester during the cold months you still won’t need your long underwear, at least not for the Mayo part of it all. You’ll leave your hotel and take the shuttle to Mayo, the shuttle is heated and carpeted so it is very warm. The shuttle will take you right to the doors of your building. You can check your coat on the first floor.

Your schedule is a guideline. If you are done with one appointment and have an hour before the next you can check in early and in my experience you’ll almost always be seen early. It is the same with appointments for the following days, if you are done with time to spare you can check in at future appointments and see if they can see you.


If your Mayo Clinic app isn’t working (for me a letter was off of my email so I wasn’t receiving the emails to activate my app) call and get that taken care of. If you’re already at Mayo when you realize your app isn’t working ask at any desk and they’ll tell you where to go, off the cuff I want to say it was the business office in Ganda building and it took less than 5 minutes.

If you like burgers you’ll need to eat at Newt’s while you’re there.

Be realistic; it isn’t a medical utopia but it is a top notch medical facility where you will have a multitude of personalities working with you.

Bring your supplies… I mean your hobby supplies. As much as you’ll be busy busy busy there was also more downtime than I am used to. Luckily my hobby is reading so I was able to download books as I went. I think I read three books that week.

The standard answer to the question of how long you can expect your stay to be seems to be 3 to 5 days however most people who I know had appointments spread over 5 to 7. My appointments were over 6 days and I only made arrangements for childcare for a Monday through Friday stay. At the neurologists desk said they would do a phone consult for my final appointment. When I called to confirm when I should expect the call the neurologists secretary said he doesn’t do telephone consults. They do however mail you everything including final notes from the mail doctor regarding all of your testing and appointments. You may want to consider staying a bit longer then the time-frame you’re given.

Mayo Day One

Mayo Testing

Other Just Mildly Medicated Posts to check out

Being thankful when chronically ill

Tietze Syndrome… OUCH


Mystery Diagnosis segment on Linda Smith


Mayo Clinic; Testing, Testing 1,2,3…

April 2nd, 2014 by Carrie, the Just Mildly Medicated gal

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 PCM, they say they don’t send referrals to the PCM only directly to the insurance company. I call the insurance company; tell them the referrals are coming straight to them and to please send the authorizations directly to Mayo at a certain fax number to expedite things. The insurance company tells me they can’t fax authorizations and they’ll get them in the mail ASAP. I explain that I am physically at the Mayo Clinic waiting; they counter that Mayo Clinic does not count as admitted to a hospital blah blah WTF… Apparently I am the first person EVER to go to the Mayo Clinic with my insurance.

Being a chronically ill patient is like swimming upstream. You’re never really done or get to the destination; most people don’t understand why you are still swimming at all. The answer is pretty simple, I am not going to get swept away.

I got a call at 5pm that day from Mayo and they had a schedule for me! I was so relieved to have a plan. Now it was time to get rolling.


10 am Behavioral Health for an evaluation and discussion of Anxiety Disorders

1 pm 24 hour Holter and BP cuff Placement

2 pm Endocrinology Lab (titer as well as norepinephrine, epinephrine, and dopamine measurements)


8am Behavioral Health for an evaluation and discussion on possible Chronic Subjective Dizziness

10:30 am Audiogram/ Hearing exam

1:15 pm Stress Test with Oxygen Uptake


8:45 am Autonomic Reflex Testing, Reflex Sympathetic Dystrophy (RSD) which includes QSART or “sweat test”, monitoring during simple maneuvers like deep breathing, then the finally of a 10 minute Tilt Table Test.

11 am Cardiology Health Clinic Consult

Testing that was scheduled but for dates I would no longer be at the Mayo Clinic:

Otorhinolarynology Vestibular Test or Balance Test (should be called Make You Dizzy and See What Happens Test)

Behavioral Health Follow Up

Neurology Follow Up.

After checking in to my first Behavioral Health Appointment  I am given the first of many red pagers. Each check in you’re handed a red pager that first vibrates than starts beeping when its your turn. I had to kind of laugh because it has been almost 20 years since I last carried around a pager, though for different reasons, willing it to go off.

Mayo pager

I loath psychology evaluations. I am an anxious over explainer (okay so that isn’t an actual diagnosis) so being asked to answer questions with a yes or no makes me sweat. Things like “Do you think about your health condition daily?” Well yes, every time I am symptomatic, but I am not sitting in a corner freaking out about it. To my HUGE relief I loved everyone at Behavioral Health. They stayed on task but we also had some fun. After several “well yes BUT” responses on my part the examiner and I agreed I likely had Wellyesbut syndrome.

Then it was off to get suited up for my Holter Monitor and BP cuff Placement. Many of us have been hooked up to holters multiple times, this was no different. The BP cuff was new to me though. I have a monitor at home but its a wrist cuff and doesn’t go off at timed intervals, that BP cuff goes off every 10 minutes during the daytime and every 20 minutes between 10pm to 7am. So much for a restful night…

Endocrine Lab I did measured several titers, vitamin, and hormone levels. For the norepinephrine, epinephrine and dopamine portion you are hooked up to an IV and then get to lie down in a dim and quiet room for about 30 minutes, then someone sneaks in and draws blood for the first measurement. After that you walk around for 10 minutes and go back and have another set drawn.

The next day’s Behavioral Health was painless as well. We covered a lot of information on Chronic Subjective Dizziness as well as more on Anxiety Disorders. There was a long conversation about the difference between being an anxious person due to personality traits verses suffering from an Anxiety Disorder and the physiological changes that happen in a person with Chronic Subjective Dizziness. It will take more conversations with my medical providers at home to decide if I am having psychological responses to dizziness or if I am dizzy because of physiological changes. The endless circle of trying to isolate if the chicken or the egg came first…

Audiogram DONE. I have two high pitch sounds that I am not hearing in my left ear but other than a zombie cricket invasion coming from the left side I think I am fine. My hearing wasn’t thought to be an issue so much as the hearing evaluation had to be passed before I could do the Vestibular Testing and I was on a stand by list for that.

Next was the stress test. Now the last time I did a stress test I had an episode of nonsustained Ventricular Tachycardia and I was in no rush to get to that appointment early.

my heart

Okay, a gal can only avoid something for so long… hooked up and ready to run… Okay walk, lets not get carried away. The tab for the ECG were attached and we did a few resting HR and BP readings. I made it 7 minutes into the stress test and it was stopped.

The Autonomic Reflex Testing or Reflex Sympathetic Dystrophy (RSD), was exciting. The other tests up until this point were things I could have done at home and some I had already done a few times, this one was new. Now my being excited to participate in testing that could help lead to a more detailed understanding of what was happening to me shouldn’t be confused with excitement to actually DO the testing.

I laid down and they made quick work of attaching padding to my left arm and leg explaining that these are sweat cells and they will put a mild electrical current that will activate the nerve and collect the sweat level.

“You know what guys, I think I’m good… maybe we’ll skip this one.”

No such luck, apparently they thought I was kidding. It was explained it will feel like a mosquito bite on the inside that I can’t touch, but only until I start to sweat and then it will ease up. Well my upper lip started sweating but apparently that was about it. It stung like several mosquito bites at each pad location and it stung the entire time. (Liar butts!)

Next was motoring HR and BP during simple instructions. They asked me to breath deeply for awhile, then we did very long forceful exhaling, and holding my breath. No big deal other than I started to see spots during that whole long forceful exhaling… I mean who does that?

Time for the roller coaster ride called a Tilt Table Test. Now mind you this is simple lying down on a table with straps over you for security and then the table rises to create a safe measurement of BP and HR during a postural change. The test is geared to see if a postural change triggers neurocardiogenic syncope, something not normally triggered by postural changes but more in extreme “stress” situations like people who faint at the sight of blood or the new father who passes out while his wife is giving birth. For some of us it just happens when we stand up.

Then I went to another Albott and Costello routine with cardiology.

Cardiologist “You are severely deconditioned. You’re in the bottom 25% for women your age with an inability to complete the stress test. you’re VO2 is severely decreased and you’re  max pulse pressure is much too wide. Nonsustained Ventricular Tachycardia for someone like you doesn’t surprise me but it shouldn’t be happening. At least your BMI falls somewhat in a normal range.”

Me “I had these same issues during my first stress test and I was working out regularly and was in no means deconditioned. I don’t believe I am deconditioned now. I work out a minimum of 3 days a week for at least 20 minutes. I’ve biked 100 miles in a week, I’ve done the 100 push up challenge, I love pilaties; trust me I’d much rather kick ass than not be able to do things. I only have these issues when trying to do anything upright, even walking, in fact I was walking the whole duration of the stress test. I don’t even believe in the BMI because it doesn’t take the physical structure of a person in account but I fall comfortably in the normal range. I bet I could last longer than you on the recumbent bike test.”

(not sure I recommend challenging your cardiologist to a race but I was pissed)

Cardiologist “You are severely deconditioned. You’re in the bottom 25% for women your age with an inability to complete the stress test. you’re VO2 is severely decreased and you’re  max pulse pressure is much too wide. Nonsustained Ventricular Tachycardia for someone like you doesn’t surprise me but it shouldn’t be happening.”

Me “I had these same issues during my first stress test and I was working out regularly and was in no means deconditioned. I don’t believe I am deconditioned now. I work out a minimum of 3 days a week for at least 20 minutes. I’ve biked 100 miles in a week, I’ve done the 100 push up challenge, I love pilaties; trust me I’d much rather kick ass than not be able to do things. I only have these issues when trying to do anything upright, even walking, in fact I was walking the whole duration of the stress test. I don’t even believe in the BMI because it doesn’t take the physical structure of a person in account but I fall comfortably in the normal range. I bet I could last longer than you on the recumbent bike test.”

After a few rounds of that my husband interrupted and said “Enough” the cardiologist and I both shut up. My husband asked the cardiologist what he recommended (exercise program 3 to 5 days a week no joke) and we left.

It was Friday afternoon and my last day at Mayo so we went and checked with Otorhinolaryngology to see if I could get in to do the Balance Test.


Mayo Clinic; Dysautonomia chick still on her feet

waiting, waiting waiting… and I’m in!

Posturography was the first part of the Make You Dizzy and See What Happens test.


Umm, safety harness… what…

Well I didn’t get harnessed, the older gentleman testing me just said “Don’t worry, I’ll catch you.” Hmm, all of a sudden being harnessed sounded like a better option but it ended up fine. The moving platform was just a foam pad that was unstable but not moving. It was kind of like Wii Fit only on thick foam.

Then it was on to Vestibular Evoked Myogenic Potentials, which means time for more electrodes, this time on my face and neck.


This test was only mildly annoying not difficult. A small ear piece is placed in your ear and you turn your head to one side and when you hear a sound you lift your head. the electrode measures small involuntary muscle movement that is triggered by your inner ear. The sound in your ear happens to sound very much like a helicopter is landing on you.

Next was a Videonystagmography; for this I wore goggles that had a camera inside recording my eyes as I followed a light across a screen, then in different positions with directions (like lie on your left side and look as far to the right as you can), next a cover went over the goggles so it was dark and I had to look left and right.



The last part was a doosy though. You lie down and the tester puts water in your ear canal. This creates involuntary movement of your eyes which is being recorded by the very heavy but fashionable goggle camera. The only thing is as soon as the water hit my ear the world started spinning. This is a pretty normal response but holy camoly I wish I’d been prepared for that.

After this we went to the last two appointments and tried to get in but weren’t able to. Those appointments were cancelled and we were told I’d get a phone call from the neurologist and then all of my records would be mailed.

Check this link for the results from the Mayo Clinic Testing.

If you missed it here is Day One of my Mayo trip.

Thanks for all of your support!



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…


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…”


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…


Kat and Beau, a Dysautonomia Service Dog Alert Team

January 2nd, 2014 by Carrie, the Just Mildly Medicated gal

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!

Kat and Beau



I know you suffer from Dysautonomia but the illness can be so different from person to person. Can you share with us how Dysautonomia has impacted your life?


“Dysautonomia has impacted my life greatly. My symptoms started when I was just 9 years old. I would pass out on occasion but doctors couldn’t find anything wrong with me. Since my symptoms weren’t too bothersome, I began competitive swimming and was ranked in my state. Swimming was something I loved and planned on doing through college. At age 16, I had a tilt table test done and when I passed out, my heart stopped for 28 seconds. I was diagnosed with Neurocardiogenic Syncope and had a pacemaker implanted. We believe the surgery triggered my Dysautonomia and caused my symptoms to intensify.

After my surgery, I began passing out daily- 5 to 10 times. I unfortunately had to quit swimming because my symptoms became so extreme. Early this year, I saw a specialist who officially diagnosed me with Dysautonomia, POTS, and Gastroparesis. Day to day, syncope is my most bothersome symptom because it greatly limits my independence. I often require the use of medical devices such as wheelchairs, walkers, and shower chairs. I’ve seen many specialist for my conditions and none of them really know what to do with me. Two cardiologists have officially said that I am the most complicated case they’ve seen. For most, medicine does the trick. 

 Many people ask me how I can go through all of this with such a great attitude and I just tell them about all of the amazing people I have met along this journey and the many blessings I have received that I wouldn’t have otherwise like Beau.”


What originally made you think you pursue a service dog?


“My grandmother heard from a friend about a one of a kind dog alerting to syncope. Most medical alert dogs alert to diabetes, seizures, and allergies so syncope is new to the service dog world. I was turned down by multiple organizations until I finally found one willing to experiment and try to train a dog for syncope. “


I’ve had the pleasure of seeing pictures of Beau before today and he is an adorable labradoodle. What was the process like to chose Beau?

“Beau’s trainer prefers to work with labradoodles not only because they are loyal and loving dogs, but because they are also hypoallergenic. The breeder did an aptitude test on the puppies to see which ones would be good for service work and that’s how Beau became mine. I couldn’t imagine having any other dog be my hero. “

 Blog Kat1


What types of things will Beau do to assist you?

“At an early age of only 11 weeks old, Beau alerted to a syncopal episode and has been doing so ever since. That in itself is a miracle but Beau will learn much more. He will be able to pull my wheelchair, help retrieve dropped items (bending over causes syncope) get help when needed, and much more. He is amazing and will help me to gain my independence back. My hope is that I will be able to attend a college with him rather than doing online courses.”

What is Beau learning right now?

“Beau naturally began alerting to syncopal episodes when he was just 11 weeks old. Ever since then, he has hasn’t missed an episode. Right now, Beau is working on a multitude of things. He already has all of the basic commands down and even knows them in sign language. So the next step for him is to learn the more specific commands that I need him to know.”


You are able to share time with Beau during his training so you are getting a taste of what daily life with a service dog will be like. What would you say has been the biggest adjustment to life with a canine partner has been so far?

 “The biggest adjustment to having a service dog at your side is learning to deal with people. Many will stare and some will even make comments. Some of those comments will be positive, and some will be negative. It’s also really hard when you are dealing with an employee who doesn’t know ADA law and tries to tell you that your dog is not welcome. This is all the more reason why we need to spread Service Dog Awareness!”

Beau at work

Beau at work

Gastroparesis, seriously…

October 18th, 2013 by Carrie, the Just Mildly Medicated gal

Being in the chronic illness community I have connected with a lot of people with Dysautonomia as well as other chronic illnesses. The term gastroparesis wasn’t new to me, although spelling it was a bit of a challenge for both myself and autocorrect.

(gastroparesis is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer time than normal)

I felt bad for those that had gastroparesis, even those on the mild side. I love food and my family’s days revolve around food. We start the day talking about what we will have for dinner. Now that isn’t to say we are elaborate foodies, we have 4 kids and among them a pesco-pollo vegetarian and another with celiac disease. We have to make sure there are appropriate options available at breakfast, lunch and diner, not to mention snacks to accommodate kids who will eat anything to those with specific dietary needs and desires.

While I live days thinking about food replacements and equivalents, having gluten-free foods and meatless protein options,  I couldn’t imagine a day revolving around avoiding food, well not until I was laying under a scanner with scrabbled egg in my sinus passage.

Okay let me back up…

To be honest it didn’t dawn on me that my constant need for Prilosec to try and treat the nonstop heart burn was part of a bigger picture. Being full had nothing to do with my eating, I ate because food is good. Feeling full before I even started a meal didn’t stop me from eating. Sadly even the few times I threw up didn’t raise any red flags that I was willing to address. I was dizzy before hand so I chalked it up to that darn Dysautonomia. Now when I got on the scale at a doctors appointment and had lost 10 pounds I was pretty excited, until further thought that I hadn’t really done anything to lose those 10 pounds.

If you’ve hung around here a while you know I have a port and have daily infusions to help prevent me from passing out. My RN who comes to access me at the beginning of the week didn’t leave me the luxury of denial. Every week she asked how I was feeling with the run of specific questions. My nausea became a weekly admittance followed by the encouragement to make a doctors appointment and my not making that doctors appointment.

During my yearly trek from Missouri to Pensacola, Florida to visit the rather wonderful Center  for Autonomic Disorders we started talking absorption.  I wasn’t absorbing some vitamins the way I should, my levels for a few had dipped down to deficient even with supplements and most others were at the lowest end of normal. After more talk it was pretty clear that a few of my meds weren’t working as well as they should considering the dosage and my very faithfully taking them on time.

When the talk turned to tummy there was no way out, I was going to have to say to a doctor that food, my long time friend, had in fact turned foe.


Nonstop nausea… feeling full pretty much all the time… bloating to the point of painful after eating… yes, I even threw up…


After coming home I made the appointment with my primary doctor to schedule a gastric empty study and mentally gave the middle finger to every meal I ate before the actual day of the gastric empty study. I even had my last supper the night before the test, Chinese take out yummm… bourbon chicken, fried rice, and an egg roll with sweet and sour sauce on it. Then I writhed in pain on the couch for two hours praying I didn’t throw up with tears in my eyes asking myself why, why in the hell did you do that?!?!

The next morning came and as I looked at my microwave eggs in the sterile hospital room all I could think was, “I have fried rice in my throat.”

Pepper, pepper will make this better… in comes the packets of pepper from the awesome gastric empty study guy and I ate the eggs while joking about when he was going to being in the bacon.

Then it came time to be horizontal with a scanner over me. I laid there with a remote control in hand prepared for the next 90 minutes of boredom. Those who know me will say “Wait a minute… REMOTE… WHERE WAS YOUR BOOK???” I assure you I had a book, the scanner made it impossible to read as it came up to my shoulders. I even asked the awesome guy if he’d read it to me. He said no, this was his only lapse in awesomeness.

After 30 minutes and some God Awful daytime TV then 30 minutes of coverage of the Government shut-down while hearing and feeling my stomachs rebel against this entire process I was realizing that this was not going in my favor. An hour in I was staring at the ceiling wondering if you could suffocate on food. I was quite sure the scrambled eggs were in my sinus passage. Thinking this was possibly abnormal I thought maybe when gastric empty study guy comes back I should inquire if anyone has in fact suffocated on egg during this, then thought maybe not.

I opted for “So, this egg… wheres it at exactly…?” Quite certain he’d say “Up your nose.” Instead he gave the you’ll have to talk to your doctor yadda yadda. Yes, I agree, I too was questioning his awesomeness. I spent the next 30 minutes focusing on not throwing up, if I burped, sneezed, or coughed it would be over, by over I mean the test and my life because throwing up is the WORST!

That afternoon the nurse from my doctors office called and said, “Hey kiddo, you have gastroparesis.” Yes, this is how comfortable many chronic illness patients and nursing staff become.

So crap, I have gastroparesis, seriously…