Archive for April, 2014

Reflecting; I need to show a little doctor love

April 25th, 2014 by Carrie, the Just Mildly Medicated gal

After some reflection on the topic of doctors I feel like I need to show a little love.

I know I am quick to giggle at a funny doctor meme

thirdopinion

 

I’ve even challenged one to a recumbent bike race, and I’ve been known to break up with a few specialists. I’ve shared loads of conversations that were infuriating… but funny. Like this one from a trip to the ER…

“It could be worse, you have something rare that we don’t know how to treat, but it doesn’t seem to be terminal. We see things much worse than this”

Wow, umm, thanks…

“In India there isn’t a specialist in the entire country for what you have.”

Umm, we are still in Missouri, right?

But I am afraid I may be coming off as unappreciative of how many great doctors I have and undermining how thankful I am for them.

When you have a Chronic Illness and frequent physician’s waiting rooms as often as others are visiting restaurants you tend to see much more of the good, the bad, and the downright funny that just isn’t seen by those going for more routine visits. Not to mention that my Army wife gig has me moving every two or three years and starting the quest for new doctors all over again.

I remember my pacemaker trilogy where I was so frustrated by both my illness and my doctors that I thought I would cry… who am I kidding I did cry. It started with Phil Collins,  then got a bit Shakespearean,  then ended with child labor, an assault, and a break up

Ahh but I digress.

The point I wanted to make is that doctors are people, they have a wide range of personalities as well personal and professional experiences they are pulling from. Some you’ll connect with and some you won’t, and that’s okay.

For me having a chronic illness makes finding a team of doctors a bit more like going on a series of blind dates. I can get a pretty good vibe on if we’re connecting within the first few minutes. If we do connect my heart does a flutter (okay maybe that was just my crazy arrhythmia) and I look forward to the next time we’ll see each other. If we don’t connect I cannot wait to get out of there and avoid the phone call for the second date, I mean follow up appointment.

Ahh then there is always the one you’ve seen over a longer period of time, you thought you were connecting, you shared all kinds of personal information… then all of a sudden one day you realize it just isn’t working out.

These crazy doctor/ patient relationships seem odd to my healthy friends but the chronic illness crowd seems to understand. I just don’t want anyone feeling like I use doctors as punching bags… okay so I did fantasize about kicking one in the throat… but that was only that one time…

I am very thankful for my circle of doctors and hope you find a team of doctors that work for you.

Gentile hugs,

The Just Mildly Medicated gal

150x186 jmm gal

Missed the Pacemaker Trilogy? Click it ;)

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)

Me!

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.

myfeet

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:

1. Multifactorial Dizziness

2. Orthostatic Intolerance

Recommendation:

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)

Diagnosis:

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

Diagnosis:

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)

Diagnosis:

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.

Tips!

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.

mywaiting

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

and

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.

Wednesday:

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)

Thursday:

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

Friday:

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.

myfeey

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.

mypaper

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.

myfacewires

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.

myfacegoggles

 

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!