Archive for the ‘Chronic Illness’ Category

Pop Sugar – Shopping for the Sick Chick

June 18th, 2014 by Carrie, the Just Mildly Medicated gal

Shopping for the Sick Chick

 

Shopping for trendy gifts for friends and family, or even a little treasure for yourself, can become difficult when you’re dealing with illness. I wanted to be able to give gifts I was proud of giving but having a hard time going shopping was making it difficult. I, like most of us, am often shopping online but not being in the stores and seeing the new products took some of the fun out of shopping.

Last year I stumbled on to the Pop Sugar Must Have Box though I knew the odds were I was possibly wasting some money, I ended up pleasantly surprised.  I managed to set aside trendy fun gifts for holidays and birthdays as well as a few things for me that I loved.

This month I am keeping the whole box just for me, then I promise I’ll go back to saving for gifts. Now the plus of saving the whole box for me is that I can share what was inside  with you without giving and previews of gifts for my friends and family!

 

Pop Sugar Must Have

 

I love that everything is packed so perfect.

Now your concerns are probably similar to my own.

Will the box even be worth the 39.99?

Will it have anything in it I can even use as a gift?

Pop Sugar Must Have

 

The June 2014 Pop Sugar Must Have Box was full of summer lovin, or at least things I’ll be lovin this summer.

Emily Giffin’s The One & Only retails at $28.00

Sachajuan’s Citrus Body Lotion retails at $24.00

Turkish-T Beach Towel (and wrap) retails at $32.00

You Smell’s Lemon Wet Wipes retails at $6.00

Lollies Basic Hair Ties retails at $8.00

One Potato Two Potato Hawaiian BBQ chips  retail at $2.00

Special Extra: Native Union $15.00 gift card

If you are interested in receiving Pop Sugar Must Have Boxes sent to you click HERE and use use code  REFER5 to save $5.00

 

BlogU, the (re)view from the wheelchair

June 12th, 2014 by Carrie, the Just Mildly Medicated gal

BlogU, the (re)view from the wheelchair

wheelchairJMM-150x150-e13757500138601

 

I was able to attend BlogU14 this June with some of my favorite bloggers and couldn’t wait to share the awesomeness with you all. BlogU14 was the dream-child of Stephanie, the amazing blogger behind Binkies and Briefcases. After finding some of the popular blogging conferences very large leaving newer bloggers a bit lost in the shuffle, she wanted to create a weekend packed with information but also focusing on personal connections. With the help of some very talented blogging buddies and sponsorships from American Public University, Nick Mom, and The Huffington Post her dream became a reality.

I felt it was important to share with you what BlogU was like for me personally, as someone with a chronic illness and wheelchair user. I live with several overlapping illness that fall under the umbrella term Dysautonomia. Some of my struggles are maintaining a stable blood pressure and heart rate and a partial paralysis of the stomach which causes nausea and a delay of digestion. The BlogU faculty was very accommodating and the location, Notre Dame of Maryland University, earned a rating of above average for actual accessibly. As all wheelchair users know, sometimes a location’s handicap accessibility isn’t actually all that accessible.

After hours I did need to find a security guard to let me into the accessible door to the dorm. I would have preferred being able to enter the building without assistance, but also understand for campus security measures the entry through the doors along the back of the building are locked after hours. It never took more than five minutes to find a guard and there was a number I could call to have someone from the inside come open the door for me.

On that note, I have to give some big love to Steph of Binkies and Briefcases making sure I was finding the campus maneuverable throughout the conference and the blogger chicks behind The Pursuit of Normal and Mom on the Run, as my buddy pals they hung with me and though we broke off and did our own thing and made connections with others, they made sure I was never stranded outside waiting alone.

When you have a chronic illness planning activities can be a project. During BlogU I had to consider things like how to conserve energy, stay hydrated, stay on schedule with meds, making sure I knew where the wheelchair accessible doors and elevators were located for each session, and making sure I had food available that I could eat.

This wouldn’t be everyone’s approach, but the some of the things I did to help ensure my own success during the conference was to be open about my illnesses and wheelchair use. When I registered of course I noted that I’d be cruising in on wheels to be sure I was in a room that fit my needs, but beyond specifying my needs during registration when sharing blog posts and conversations in our private FB group of attendees, I made sure to include things about my illness and my wheelchair use. I know many people feel strongly that they don’t need to share their disability and expect places to be accommodated as per the American Disability Act and for people to be accepting; personally I feel that if I want people to understand my situation I should be willing to share my circumstances.

I am happy to have BlogU15 on my radar next summer.

Just a few of the amazing blogs to check out.

Big Top Family

Don’t Lick the Deck

Foxy Wine Pocket

Honest Mom

Let Me Start by Saying

People I Want to Punch in the Throat

Snarkfest

Welcome to Grand Central

 

UPDATE

This post was the (re)view from the wheelchair but as Kim from Let Me Start by Saying pointed out in the comments, I did in fact have a DJ in my lap at one point… so maybe a few pics were needed to show the fun that was had from the chair ;)

There was “work”, here I am with Vickey from The Pursuit of Normal and then with Lea from Becoming Super Mommy.

Hello, they read  my blog… they have no idea what a blog crush I have on them!

Pursuit of Normal  Lea...

Then there was “PLAY” and by play I mean Nick Mom, yes… the MotherFunny Nick Mom, hosted RETRO PROM!!! My hair sadly forgot how to stay big and slowly allowed gravity to bring it back down, but fun was still had by all!

Here I am with the ever snarky Teri from Snarkfest  (I went total fan-girl on her and I’m pretty sure she liked it)

Snarkfest

 

and Ashley from Big Top Family… yeah I got a little giggly over this chick.

 

Big Top Family

 

and yes, Papa Does Preach 

 

PapaDoes

 

and sometimes, at the very end of the night, after several wine coolers (yep, wine coolers), the DJ ends up in your lap…

redefining lap dance

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!

 

 

Mayo Clinic Day One

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

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

Mayo Day One…

mayo1

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

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

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

TIME FOR THE DOCTOR

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disabled, Mobility aid, and Chronic Illness…

That crazy Dysautonomia thing I keep talking about…

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

 

Teri’s life with Dermatomyositis; Rare Disease Day

February 28th, 2014 by Carrie, the Just Mildly Medicated gal

I am always amazed with the people Dysautonomia has brought into my life, people I would not have met or had the chance to get to know without having my own illness; amazing people.

Teri is one of those amazing people and like many of us she wears many hats. She is a wife, a mother, a daughter, and even a grammy. She is also an infusion nurse and I am lucky enough to say that she my infusion nurse. Teri also wears the hat of patient, she suffers from a rare disease called Dermatomyosis. Teri is a FIGHTER, she fights everyday for her health and the well-being of others.

I was thrilled when Teri agreed to answer a few questions about her life with dermatomyositis on Just Mildly Medicated for Rare Disease Day. Rare Disease Day is an international movement to bring awareness to those suffering with rare illnesses and to shed light on the diseases.

Huge thanks to Teri, and now some of our questions and answers.

Teri, what is dermatomyositis?

Dermatomyositis, is an inflammatory myopathy that affects the muscles and the blood vessels that supply the muscles.

 

When did you realize something was wrong and that you needed to seek the help from a doctor?

My first symptoms were fever and fatigue which are vague symptoms found in many diseases. I had a difficult time getting diagnosed because my lab work looked okay and the doctors couldn’t seem to look beyond just blood work and the whole time I could feel myself declining, eventually I started having muscle weakness and a muscle biopsy led to my diagnosis in 2011.

 

What symptoms are the most difficult for you to deal with on a regular basis?

I would say my top three are fatigue, weakness and my skin. Fatigue is the worst, no matter how much rest I get it’s a struggle just to make myself move and act like a “normal” person. Muscle weakness is difficult, walking, getting in or out of my car, stairs, even things that should be easy like washing my hair seem like a big accomplishment. With dermatomyositis, unlike other types of myositis I have red open lesions on my skin especially my hands, wrists and chest. This is caused by inflammation of the blood vessels at the surface of the skin That is often the most noticeable to others. There are a lot of people with myositis that have pain, I am so thankful not to put that in my top three. I do have some muscle aches and joint stiffness at times. Swallowing difficulties and shortness of breath are also part of my daily issues.

 

How have you made changes to how you do things to help offset your symptoms?

 I make choices about what is important to me and where I will spend my energy. Before I was “sick” I felt like I had to (and could) do everything. But now I certainly save my spoons for what is most important to me, spending time with my husband, 3 children and granddaughter. I definitely prioritize my time. I try to get plenty of rest, being tired makes everything harder to do. It takes me a lot longer to do things, so planning ahead is very helpful. I am also better about asking for help, which was a very tough thing for me to learn.

 

I know you personally and can say that “you don’t look sick”, when and how do you decide to let people know about your rare illness?

That’s a difficult one because it’s a very thin line between someone understanding and feeling some empathy for your situation and someone feeling sorry for you. I get an extra advantage by being a nurse, when I tell my patients “I understand”, I really do understand. I share with some of my patients some things about my condition especially when it comes to IV treatments. It usually makes them feel at ease that you can have a port a cath and receive IV treatments regularly and still function in daily life. Life isn’t easy and when people have additional factors to deal with its nice to know you are not alone and others do understand. My hope is that I can be strong enough to show others that life keeps going even in the midst of difficulties and it is still worth the fight.

Iv Therapy access

Here is a photo of Teri accessing my port for the very first time. I was so overwhelmed!

 

What are the treatment options for someone with dermatomyositis?

Treatment options for dermatomyositis are anti-inflammatory medications and immune suppressant. During my course of treatment I developed a neutrophil antibody(which means my mixed up immune system thinks my own white blood cells are foreign and attacks them). So, treatment options have become very limited for me because my white blood cell count stays very low. I currently do IV immune globulin infusions every other week and steroid infusions monthly. I also do physical therapy to maintain the strength I have.

 

Do you have a favorite scripture, quote or motto that helps you get through the tough times?

I do. It’s from the song Walk by Faith by Jeremy Camp…”I will walk by faith even when I can not see, because this broken road prepares Your will for me”.

 

How long did it take from when you realized something was wrong to getting a diagnosis?

 It took years. The first time I went to the doctor was in 2003 and multiple doctors, specialist and tests later I was finally diagnosed in 2011. It was the most frustrating part of this journey.

When you received your diagnosis how did you feel?

 I felt relief, maybe I could even say validated. Not that I wanted to have a “diagnosis” especially one with no cure but I had known for years that something was wrong. I was definitely ready to move on to the treatment phase, which has proven to be more difficult than thought.

Thanks for inviting me and helping me be a guest…what a great opportunity to spread awareness.

 

Teri will be participating in the MDA Kansas City Muscle Walk. The Muscular Dystrophy Association funds research as well as providing services for families who suffer from neuromuscular diseases.

If you would like to help in Teri’s goal of raising $500.00 this year please use THIS LINK and on the right click “donate to our team”, the Just Mildly Medicated gal already did ;)

Team K

For more information on the Muscular Dystrophy Association click  MDA

For more information on Rare Disease Day click About Rare Disease Day

 

 

Sarah and Alice Eloise; a service dog team

February 6th, 2014 by Carrie, the Just Mildly Medicated gal

I am so happy to have a guest post from Sarah of Sarah Kate’s Silver Linings on her experiences with multiple complicated health issues and how her service dog, Alice, has helped.

I always find it funny when someone will refer to me as brave  because of the things I have faced with health issues, as if there was an option and I chose to be brave, so with that said I will try and refrain from calling Sarah brave but I will say that Sarah handles her health issues with a grace that is well beyond her years. I have learned a lot from this gal and she holds a special place to me.

So heeeeerrrreeeesss Sarah!

photo 1 (4)

 

I know a bit about your health issues, can you share with the Just Mildly Medicated readers some of your diagnosis journey?

“My diagnosis journey has been long and complicated, and it remains incomplete!  I am continuing to search for more answers, but currently my primary diagnoses are:

1) Hemophagocytic Lymphohistiocytosis (HLH): HLH is a rare, life-threatening hematologic condition that causes my immune system to be highly stimulated, yet ineffective.  During an HLH flare, a type of white blood cell called macrophages consume my other blood cells, causing dangerously low blood counts.  Macrophages also attack vital organs, particularly my liver and spleen.

2) Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS): RSD is a chronic systemic pain condition.  This causes me to have constant, intense pain covering my entire body.  Additionally it has led to dystonia in my right arm.  For three and a half years now I have been unable to bend my elbow, and the function of my hand, wrist, and shoulder have been highly compromised.  RSD has gained a reputation as being the most painful condition on the McGill Pain Scale.

3) Digestive Tract Paralysis (DTP): Digestive tract paralysis is precisely what it sounds like — paralysis of the digestive tract!  Dysmotility in my stomach and intestines leaves me unable to eat and reliant on total parenteral nutrition (TPN) which is administered intravenously each day over 15 hours.

4) Mitochondrial Disease (mito): Mitochondria are responsible for generating about 90% of the body’s cellular energy, and when they fail, mitochondrial disease develops.  Because of the widespread function of mitochondria, symptoms vary greatly from patient to patient.  It is thought that mito has caused me to have chronic pain, severe gastrointestinal issues, and bone marrow failure, in addition to other symptoms.”

 

How does your health impact your daily life?

“Unfortunately my health conditions are very disabling.  Most days I do not feel well enough to leave the house, making it a rare occurrence for me to go anywhere other than to appointments with my doctors.  And I think it goes without saying that naturally the diminished function of my right arm has greatly influenced my life as well.

Still I am sure to be up and out of bed each day.  I have found ways to keep myself busy and entertained at home.  Gradually I have adapted to one-handed living, and now I can even sew and cook!  And of course I have such fun playing and training with my sweet Double Doodle, Alice Eloise.”

 

What originally made you think you pursue a service dog?

“It is difficult to imagine, but a person with RSD can feel excruciating pain from even the lightest touch.  Something as delicate as a gust of wind can be entirely unbearable.  So anytime I am in a crowded area I have to be very protective of my right arm so that passersby do not unknowingly bump into it.  Then one day it occurred to me that if I had a service dog, she could act as a barricade between the bustle of a crowd and my painful arm.  Since that enlightened idea first came to me, I have envisioned more and more tasks that my service dog could perform to assist me in my day-to-day activities.”

 

How did you find the right organization / training program for you?

“The story of Alice Eloise and me is a bit out of the ordinary in many ways, including the manner in which we became a service dog team.  Most of the time a person receives their service dog from an organization dedicated to training dogs and matching them with a handler in need.

But for my specific requirements, I decided that it would be most suitable for me to self-train my own service dog.  I chose this route for multiple reasons.  Firstly, my big sister is allergic to dogs, so it was essential for my new companion to be of a breed that is considered hypoallergenic so as not to create any problems for my sister.  As a Double Doodle (also called a North American Retriever, which is a Golden Retriever X Labrador X Poodle mix) Alice Eloise fits this criteria.  Secondly, I simply wanted to form the unparalleled bond that grows from training a dog from puppyhood.

I fondly desired to be an integral part of those fun and silly puppy days!  Although the prospect of self-training a service dog was indeed rather daunting, it has proved to be a wise decision in our case.  Since she was a tiny pup, Alice Eloise has been exposed to my IV equipment and all of the little intricacies of my daily life;  although my typical routine is the furthest thing from average, it is all that Alice Eloise knows, making it completely normal in her estimation.”

 

How did Ms. Alice Eloise get her name?

“Alice Eloise is a very special name for a very special pup!  And of course there is a story behind this unique moniker.

Long before Alice Eloise was even born, I fantasized about someday having a Doodle of my own.  I was perpetually dreaming up different names, hoping to stumble upon the perfect one for my future puppy.  A while back an outrageous series of medical complications landed me in Orlando, Florida, for an extended stay.  After a day spent happily at Downtown Disney, I spent a night not-so-happily in the emergency room.  And in case you hadn’t heard, emergency rooms are notoriously slow.  So in order to pass the time, I found myself playing the name game.

With fanciful recollections of a Disney-filled day fresh in my memory, the name “Alice” came to mind, as “Alice in Wonderland” is a favorite book and movie of mine.  But growing up with such a common name as “Sarah” was enough to make me feel the need to be absolutely certain that my one-of-a-kind pup would have her own unique identity.  So voila, I tacked on the name “Eloise” for some added flare!  Whenever we go out and strangers ask about my pretty red dog, they always have a giggle upon learning that she is “Alice Eloise the Double Doodle”.  I guess they don’t meet such an interesting dog everyday.”

 

What was it like when you found Alice Eloise and knew she was for you?

“It was pretty much that magical, sparkly, so fantastic it couldn’t possibly be real, Christmas morning kind of feeling.  I often wish that I could go back in time and revisit that marvelous day when I first met my tiny, enchanting Double Doodle pup!  I had already fallen in love with Alice Eloise in photos, but when I went to visit her and her siblings, I tried to keep my mind open so that I could select the puppy with the temperament best suited for service dog work.

Well, in the end I am not so certain how open my mind truly was.  Even in the midst of seven roly-poly darling Doodle pups, Alice Eloise was the shining star who melted my heart all to pudding!  Oh my goodness, my baby Doodle’s charming personality had me entirely smitten in a snap.  She was very gentle, rather shy, and all kinds of sweet.  As she has grown her character has blossomed;  she somehow manages to be simultaneously quiet and docile, silly and spunky!  I like to claim that this diverse demeanor means that she is “well-adjusted”!  Really, I believe that God matched Alice Eloise and me perfectly.  You know how they say that dogs resemble their humans?  Alice Eloise most certainly has a personality that reflects my own!”

 

What types of things does she do to assist you?

“As I mentioned above, I have trained Alice Eloise to heel closely to my right side so that my painful arm is not jostled when I am out in public.

I also have difficulty removing jackets, sweaters, and gloves on my own, so Alice Eloise has learned to tug them off for me. Alice Eloise also performs retrieval-based tasks.  In the evening when I begin my TPN infusion, I am connected to a very heavy and unwieldy bag of fluids.  I am unable to carry the bag on my own, leaving me rooted to the same spot for most of the night.  So if I need something that is not within my reach, Alice Eloise will fetch the item for me.”

 

blog-photos-1-p0010

 

What tips would you give someone interested in looking into getting a service dog?

“It is important to be aware of just exactly what a service dog is.  Oftentimes service dogs are confused with therapy dogs or emotional support animals.  But while therapy dogs and emotional support animals fill very honorable and important roles, they do not perform tasks aimed at mitigating a person’s disability, and are not granted public access.  The Americans with Disabilities Act (ADA) defines service animals as “dogs that are individually trained to do work or perform tasks for people with disabilities”.

With this definition in mind, my advice would be to take a step back and really ponder what you are looking for in a service dog.  How could your potential dog best help you?  The nearly endless list of tasks that a service dog can perform to positively impact the life of their handler is simply amazing!

And on the flip side, seriously consider what you will be able to do for your dog.  Will you be capable of providing for all of your dog’s needs?  This selfless animal will be dedicating their life to serving you unconditionally.  In return they deserve proper medical care, balanced nutrition, regular grooming, and plenty of play time and exercise.

And most importantly, a service dog thrives on love.  The special connection between a person and their service dog can be positively beautiful.  I have been so very blessed to have such an amazing best friend as Alice Eloise.  Sure, she helps me with everyday tasks that I am unable to do on my own.  But at the end of the day, when the service dog vest comes off, my little sweetheart, Alice Eloise, curls up in my lap to cuddle…  And if you ask me, that’s the best service any dog could provide!

You can read a special blog post that I wrote about the journey Alice Eloise and I have taken as a service dog team by clicking here.  And if you are considering applying for or training your own service dog, please feel free to leave a comment with any questions you might have!  Alice Eloise has been such a delightful gift in my life;  so I am passionate about helping others attain this same pleasure by finding their own service dog in any way that I possibly can!”

 

What  was the hardest task for you and Alice Eloise to master?

“Task training has never been a source of great difficulty for Alice Eloise.  Of course we always strive for improvement, and we hope to expand our repertoire of individually-trained tasks designated to alleviate my disability;  but Alice Eloise has a sharp mind.  Since we have trained regularly since she was very young, she has “learned to learn”, if you will.  She has grasped the concept that whenever we are in training mode, she is supposed to be learning something.  Once she begins to focus on deciphering just what that “something” might be, she picks up on tasks and tricks relatively quickly.

Rather, with my friendly Doodle, the most challenging aspect of training has been teaching Alice Eloise to maintain her composure when she sees a favorite friend!  And she has a habit of taking a shining to any potential new friends we might meet, too.  Quite simply she has trouble containing the overabundance of love in her heart.  We have made such a lot of progress, though.  The way I view it is that if we are going to have a problem, this is the best problem for us to have.  Just think if Alice Eloise was at the other end of the spectrum;  if she had a history of being resentful to humans, I would be forever nervous that at some point Alice Eloise might respond negatively to a person whom we would happen to meet.  That behavior would be most unbecoming to a service dog, and she would be out of the job in an instant.  I am entirely pleased with Alice Eloise’s behavior when we are on outings.  She exhibits a professional bearing and has come to greet admirers that she encounters while working with a polite tail wag, and then goes about her business.  It’s something equivalent to an amicable handshake in the human world!

Whenever we are on her own turf, though, she continues to welcome guests to our house with, er, enthusiasm!  I try to manage the precarious balance that allows Alice Eloise to be a working dog, but still hold onto that joie de vivre characteristic of wildly happy pups.  I want her to be able to relax at home and to play with gusto!  While service dogs are indeed highly respectable citizens, remember that they are still dogs!  So never judge a service dog who is off duty.  Their devoted work more than earns their right to let loose and play hard!”

 

Have you and Alice Eloise have any embarrassing bumps in the road during early public access days?

 “Regrettably I have no humiliating anecdotes of public access flubs to have you doubled over with uncontrollable belly laughs.  Well, actually to be honest with you, I don’t regret it one bit!  Still, the uncertainties held in our first excursions together were somewhat intimidating to be sure;  how might Alice Eloise react to all of the novel, exhilarating, and maybe even slightly scary discoveries that she was sure to happen upon while on these momentous adventures?  What about the mysterious physics of elevators, the speeding stretchers whizzing by, the strangers wearing funny masks?  A hospital offers any number of opportunities for a rookie service dog to make a shambles of their reputation, landing them smack-dab in that proverbial doghouse!  But the only way to transform these unfamiliarities into commonplace situations for my fledgling service dog was to expose her to the big, wide world out there.

To my delight, all of my initial misgivings have thus far been dismissed, as Alice Eloise has yet to cause a stir on any of our outings.  Granted, the first time she accompanied me to the pediatric hematology/oncology clinic, she did give an uncharacteristic, high-pitched squeal when the technician called my name to escort us to an exam room.  You can bet that I was mildly mortified!  But if that is the most disreputable blot on our résumé, then I consider our career as a service dog team a success!”

 

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