Archive for February, 2014

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!

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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.”

 

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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!”