Archive for February, 2013

SCAD; Rare Disease Day 2013 and Happy Heart Month

February 28th, 2013 by Carrie, the Just Mildly Medicated gal

Today Just Mildly Medicated is bringing a story of a woman who lives life to the fullest even after a huge scare. Kyndall is the sister in law of an awesome friend of mine, Mindy. Mindy has always advocated for awareness of SCAD so when I had the idea to share my little space of the internet for others to share their story over the week encompassing Rare Disease Day I asked Mindy to pass the request. It also is very fitting as February is America’s National Heart Month!
Thank you Kyndall for sharing your story!
Carrie @ Just Mildly Medicated
 
February 28th is National Rare Disease Day
 
I have a rare disease, at least that’s what I was told 2 ½ years ago when I had a heart attack at age 36 and 4 stents put in my LAD due to a Spontaneous Coronary Artery Dissection – SCAD as it is known.
Here’s what I googled and found out about SCAD 2 1/2 years ago, “SCAD, a mysterious condition in which the internal layer of an artery separates from the outer wall, creating a fissure where blood clots can form and potentially block blood flow. SCAD frequently affects young, healthy women who have no risk factors for coronary artery disease. Spontaneous coronary artery dissection is a rare and generally fatal disease.”
 
Back then I was told there were 300 documented cases of SCAD ever and only 75 of which the patient survived the episode. Whew, that’s a lot to take in! But wait…
Technology, what would we do without you?

About 3 months after my heart attack in 2010, SCAD was in the news!  Through social media, we patients were finding each other from all across the globe.  At first we were finding each other on a medical social media site called inspire.com.  Then, we moved to Facebook to create a closed group. To date we have 232 SCAD survivors sharing triumphs and failures with each other on a daily basis.
 
After finding each other, some of the survivors approached Dr. Sharon Hayes a cardiologist at the Mayo Clinic, about doing a study.  Prior to social media, trying to find a group of surviving SCAD patients to study was next to impossible.  But here we all were, sharing stories and helping each other through the ups and downs of our “rare disease”. 
 
I am happy to say that a study is currently underway at the Mayo Clinic!
 
Rare disease, that’s what “they” like to call it, we survivors have termed it underdiagnosed.  Weekly, new SCAD survivors find us on Facebook and we walk that new survivor through the ends and outs of conquering this “rare disease”.
 
From my heart to yours, Happy Heart month everyone,
Kyndall


 

 
Here I am on the left on top of a 14,000 foot peak with my bff, Jen
(3 weeks prior to my heart attack)

For more information
spontaneous coronary artery dissection

Lupus and Ankylosing Spondylitis; autoimmune disease; Rare Disease Day 2013

February 27th, 2013 by Carrie, the Just Mildly Medicated gal

I am so proud to bring you a post from Jody, a strong Army wife and mother, a woman who is a fitness role model to many who do not know her story. I had the pleasure of forming a friendship with her the year before we each started very different journeys through the diagnostic process for different conditions.
Thanks so much for sharing!
Carrie @ Just Mildly Medicated


I’m a 37 year old military wife, mom, fitness enthusiast and someone who now lives life with a pill box I used to see my grandparents have, labeled Mon-Sun full of pills I have learned in the last 3 years control my wellness. Sounds depressing I know and trust me I’ve been there and done that but now I have embraced that for now this is what I need to function and live life to it’s fullest and instead of hiding the box and pretending I feel GREAT all the time I am honest that I have good days and I have not so great days and on the days I feel good enough to push myself and my body I DO and when I can’t, I don’t cry anymore. I tailor and accept tomorrow is a new day. 

 It all started about 3 years ago. As a fitness instructor, personal trainer for quite a while I got to a place in my heart that I knew something wasn’t right with how my body was functioning. I had run the Army 10 miler setting a personal record of 72 minutes in October and by mid-November I was feeling winded just walking up my incline driveway. The headaches were excruciating and to say I felt lethargic was an understatement. I felt terrible, no stamina, little energy and around Jan. I miscarried our 3rd child and again was living on Excedrin to function. 

What I used to do effortlessly on the spin bike and in my cardio class was excruciating. So 6 weeks later I decided I needed to seek help. I saw a provider who actually listened to me and started to uncover the underlying problem but it took about 6 more months before I really knew what was happening. 

Severe anemia, and that was after colonoscopy, MRI of my brain, EKG, Stress test, that’s what they came up with and they weren’t sure why I was so anemic. Long story short we moved, I left that Dr. and landed in Alaska where now I was having what started as 2 knuckles on my left hand swollen (for years) turn into 3 knuckles and then I could barely write my name, because I couldn’t grip the pencil. I couldn’t open jars, again thinking it was muscle stress I wrote it off because I was feeling more energy from the iron I had introduced to my life but then it all hit again…fall in Alaska, COLD already, I was having a hard time just getting out of bed and moving freely. I noticed energy levels fading so I went into a new PCM to get some blood work done for what I thought would help me adjust my iron levels but the results came back with a shock. 

My husband had just left for JRTC, getting ready to deploy for a year, and the Dr. called and said my blood work came back with a positive ANA which meant one of 2 things, I had SLE (systemic lupus or Scleroderma) Say what? I heard the Dr. say I’m sorry, this will be hard for someone like you who is so active but I am recommending a compassionate reassignment for your husband and a great rheutmatologist to get you the best care. 

OK wait my husband’s career is on the line, he’s gone and I’m left with 2 kids and a Google search that dropped me to my knees with the “what if’s and what nexts” So know I am being treated with not only Lupus but also Ankylosing Spondylitis as the rheumatologist uncovered after extensive xrays fusion in my pelvis, spine, shoulder that has fused and exposed probably 10 or more years of living with these autoimmune diseases. 

So today I take a low-chemo drug, I inject myself every other week with a drug for the movement of my joints and hopefully to avoid further tissue,joint damage and daily take at least 3 other meds and as frustrating as it can be that nobody knows I have days when I can barely move because heck , I am 37 and teach fitness classes and volunteer at school and teach Sunday school and seem like every other super mom want-to-be :) my story doesn’t end there! 

I am determined to FIGHT this as naturally as possible but with the realization that I need meds as well. I have tried an inflammation diet I think helps but I have also learned if I think I can go without my meds I will flare and it might end me up in the ER with pleurisy/fluid around my lungs and when I can’t breathe it’s scary. 

AWARENESS is so important and I’m glad to know I have a friend who is dedicated to sharing truth and knowledge as knowledge is power when it comes to you own health! So I am learning autoimmune diseases couldn’t be more frustrating because they mimic each other and nobody can really pinpoint one vs. another and the treatment is a science experiment and I’m the variable :( but I have also learned to Carpe Diem in a BIG way in my life and cease every moment I can function normally without much pain and never give up, never give in, never lose HOPE! 
Jody

Links for more information
Spodylitis Association of America
U.S National Library of Medicine Systemic lupus erythematosus (SLE)

Idiopathic Hypersomnia; Rare Disease Day 2013

February 26th, 2013 by Carrie, the Just Mildly Medicated gal

Just Mildly Medicated is so happy to bring support to a friend as well as awareness to Idiopathic Hypersomnia and Rare Disease Day. This is from Shep, a hilarious Jersey guy who actually chooses to spend some his waking hours chatting it up with me.
Take it away Shep…
1. The illness I live with is:   Idiopathic Hypersomnia  which is a chronic, incurable Central Nervous Disorder where in simple English, the sleep neurotransmitter malfunctions (think of it like a light switch stuck in the sleep position) and your body never gets a full amount of normal restorative sleep.  Many people with this disorder will sleep 14-20 hours a day and then be exhausted the few hours a day that they are awake.  I do not have this “long sleep” version of the disorder. I wake up easily at a normal time, but wake up exhausted, stay exhausted, nap in the afternoon which is not restorative so I wake up from my nap, still exhausted and spend the rest of the day and night exhausted….see the pattern?
At its worst, I cannot maintain my mental focus for more than a short period of time  so my ability to think, to work, to speak and have a meaningful conversation with someone is exhausting because I often I struggle to  find the words I want to use to express myself ….in many ways, I have become a hermit in my home and have become largely dependent on my wife to drive during the large chunks of the day and night, when I cannot safely be behind the wheel of a car both for my safety and yours.

2. I was diagnosed with it in the year:  2007 but it got significantly worse two years ago.

3. But I had symptoms since:  1988 after I had another illness called Sarcoidosis which knocked me on my rear end for almost a year. My health has never been the same since.

4. The biggest adjustment I have had to make is: despite desperately wanting to participate fully in life, I am often forced to be an observer rather than an active participant for more than a short period of time before my energy completely peeters out. All that said, I will try until my last day, to have fun, to laugh, to enjoy my wife, my kids and my friends, to travel, albeit at a slower pace and generally be grateful for all the blessings that I do have in life.

5. Most people assume: that they understand how I feel.  What they understand is being tired at the end of a busy day, what they don’t understand about living with unremitting exhaustion  is waking up completely wiped out and going then going downhill from there. Being so drained that your bones hurt and all you want to do is curl up somewhere and cry. That forming sentences becomes your enemy because you can’t reach through the brain fog to find the words you need to complete a sentence. Living your life primarily on your sofa and that most of your friendships are on Facebook because face to face extended human interaction is physically and mentally overwhelming and exhausting.
6. The hardest part about mornings: is that it takes me two or more hours after waking and taking my medications and drinking a lot of coffee, to finally have some semblance of mental clarity to work for three or four hours before my body gives out
7. My favorite medical TV show is:  N/A…  I don’t have the patience or the sustained focus for network TV

8. A gadget I couldn’t live without is:  my CPAP machine which keeps me breathing as I sleep. In second place would be anything that Apple manufactures

9. The hardest part about nights:  nights aren’t bad, days are challenging

10. Each day I take:  a stimulant that is supposed to make me more alert, but is only slightly more effective then drinking Diet Coke. I also take a full complement of daily vitamins and mineral supplements,, sub-lingual B-12, weekly B-12 injections, weekly IV for a massive load of vitamins and minerals, and assorted potions and notions and active bacteria to build up my strength and my immune system which is less reliable than my soon to be replaced car….

11. Regarding alternative treatments:  I am strongly in favor them….Dr Bombay was my favorite guest character on Bewitched and I’m pretty sure he was an alternative practitioner 

12. If I had to choose between an invisible illness or visible I would choose:  Invisible….I can keep up the facade of normalcy to people who don’t know since I look and I hope that I act normal…I am only now begin to let down my guard with others and be honest about my health and limitations without as much fear of being judged or ridiculed. I have enough self-esteem that if someone chooses to judge me based on their misguided judgments or lack of compassion, then I do not need them in my life.

13. Regarding working and career:  I have been forced to shrink my CPA practice because my energy level and maybe more importantly, my ability to focus for more than a short period is so compromised.

14. People would be surprised to know: how lousy I feel a lot of the time, even though they see a relatively happy person on the outside

15. The hardest thing to accept about my new reality has been: that my best days are behind me although I have learned that happy fulfilling days are still ahead of me, even if they are different days then I would have expected before this thing got bad.

16. Something I never thought I could do with my illness that I did was: to learn that I am a much stronger person then I ever thought possible, that I am a fighter and I’m not giving up on fighting this blasted disorder

17. The commercials about my illness:  N/A

18. Something I really miss doing since I was diagnosed is:  living every day like a normal person, driving longer than 10 minutes from home without fear of getting into an accident, going out to restaurants, theaters and movies and not having to back out of events because I’m so wiped out

19. It was really hard to have to give up: being a somewhat healthy person who could at least, pretend to still be a normal person

20. A new hobby I have taken up since my diagnosis is:  me….I’ve discovered something special deep inside and become a much better, emotionally stronger me as I have accepted the hand that I’ve been dealt and developed the mindset of  “f*** you, I’m not going to be defeated by this thing.”

21. If I could have one day of feeling normal again I would:  just enjoy feeling like a young 54 year old, not an old 54 year old

22. My illness has taught me: what every six year old knows, that life is not fair so get over it and suck it up, buttercup!

23. It bothers me when people say:  if you’re tired, take a nap but it bothers me more when people who should say something, say nothing…that’s a horrible feeling

24. But I love it when people: listen without judgment and express concern and love even if they cannot fully grasp what I am going through

25. My favorite motto, scripture, quote that gets me through tough times is:  get out of bed and just live to the max, whatever the max is that day

26. When someone is diagnosed I’d like to tell them:  you have two choices, you can either “give in or give up” or you can fight with every fiber of your being to make sure that you live every day to the fullest that you are capable of doing

27. Something that has surprised me about living with an illness is:  I’m a lot stronger than I ever knew and that I do have people who love me and accept me for who I am now

28. The nicest thing someone did for me when I wasn’t feeling well was: marry me, understand me and never judge me when I have to cancel plans at the last minute or tell me that it’s okay, when I am so exhausted and that I can’t think straight anymore.

29. I’m involved in bringing attention to Rare Disease Day because: many people, including several of my good friends also have invisible chronic illnesses and we all need more understanding, compassion and support…

30. The fact that you are reading this list makes me feel that maybe I can teach you something about people who may look fine, but are, in reality, struggling to get through each day.
 
Shep Greenberg
 

Dysautonomia; Rare Disease Day 2013

February 25th, 2013 by Carrie, the Just Mildly Medicated gal

February 28th is International Rare Disease Day. Rare Disease Day is an day of advocacy, in the US a Rare Disease is defined as affecting fewer than 200,000 people.

This week I am proud to say people who have a rare or chronic illness have agreed to share their story in hopes to spread awareness of various illnesses as well as Rare Disease Day. Some of these will fit the American definition of a Rare Disease others are chronic debilitating illnesses.

Just Mildly Medicated is a blog that focuses on my life with my chronic illness, Dyasautonomia. Dysautonomia is a large umbrella term that encompasses many conditions that often overlap. While Dysautonomia as a whole is not considered a rare disease by American standards, estimated to possibly affect 500,000 Americans though we are far from that number in actual diagnosis. Dysautonomia is not well understood and is often misdiagnosed. Even more so than the larger umbrella term the specific conditions that fall under Dysautonomia are often rarely diagnosed and treated properly.

Dysautonomia International lists a few more common autonomic illnesses such as Neurocardiogenic Syncope, Orthostatic Intolerance and Postural Tachycardia Syndrome other less common are Pure Autonomic Failure and Multiple System Atrophy. This is by no means a full list, just a few examples. My version of Dysautonomia, Pure Autonomic Failure is considered a Rare Disease by the  US Department of Heath and Human Services.

The Autonomic System is complicated and having a system that is not functioning properly is difficult to treat because the symptoms and conditions are ever changing. A person could have a common type of Dysautonomia, say Neurocardiogenic Syncope, then develop a spasm of accommodation in the ciliary muscle of the eye. Both controlled by the same system and caused by the same illness yet one considered more common the other rare.

I hope this week people find the time to learn a bit about what life is like for those who live with illness; through sharing we create more understanding.

Thank you,
Carrie @ Just Mildly Medicated


 

Friday’s Letters; Texas Roadhouse and the nuts…

February 22nd, 2013 by Carrie, the Just Mildly Medicated gal

Dear Texas Roadhouse wait staff,

I swear I am a a great mom and I try to be an awesome person. I do not know why when my family comes into your restaurant I end up saying the most unfiltered things. The first time I thought it was because I had a drink and I am a light weight these days due to my becoming a bit of a shut it (okay mild exaggeration) and also my over all opinion that drinking alone just makes me laugh out loud and so often I make myself feel awkward (true story) so I don’t drink much.

So the first time I started this trend of embarrassing my family at your establishment, which I of course shared publicly right here during a confessions of a Mildly Medicated Mom, I think we all thought it was a fluke. My boys, at the time 7 and 9, were busy cracking peanuts and mom was sipping on some frozen fruitiness drink with a goal of feeling fuzzy. College town, packed place and cute waitress all around when I decide to give my sons the praise they deserve “Thanks for taking care of your nuts under the table!” Woa… the music stopped as I said this way to loud cause I am in that ‘I love you man’ phase of fuzzy. Ahh we laughed, we almost cried… well older son almost cried.of embarrassment and my husband and I almost cried because that was hilarious.

So we went a few nights ago and in the car we even had a laugh about the comment. I will be damned if when the waitress comes for our order I was not feeling great so I was a bit distracted, and I am ordering for 3 kids and myself and good god if someones order is wrong… well its high stakes (pun  intended sorry). While I am reciting the details of meals outside of my view the hubs smashes a peanut on his forehead . I was annoyed, ‘I am trying to get YOUR orders correct could you kids calm down’ is on the tip of my tongue.. and then BAM! My 7 year old smashes a peanut shell on his forehead so hard it shocks all of us. My immediate response was “GOOD LORD SON DO NOT SMASH NUTS ON YOUR FACE!”

I’ll be damned, it was in between songs again! The boys (including my husband) tried to keep it together, they really did, but of course what boys wouldn’t lose it over that one. Any hint of the words nut or ball, even if I ask “Do you want cheese balls” is grounds for my 10 year old to fall apart in hysterics then pulling the 7 year old in with him. The hubs is falling apart because 1) totally his fault and 2) the obvious yet unintended sexual innuendo which at this point was well over the kids heads (give em a few years and they’ll laugh all over again at these). My hubs owned up to starting it and I just shook my head mumbling things like ‘who does that’ until our food came.

I just hope you continue to find us amusing because we do love it there…

A few nuts shy of the circus,
Me

The beginning of a trip to the Mayo Clinic, Night Ranger and Roller Coasters

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

Hold on, let me get some coffee…

I knew the referral was in the works and that a letter from the Center for Autonomic Dysfunction was on the way to add to my records but seeing it, knowing that soon I will be hashing out when the Autonomic and Cardiology departments can see me during the same week, it is kind of strange.

I tried to actually avoid the Mayo Clinic. Early on, I was given the option of Mayo or a small Florida based Autonomic Dysfunction Clinic. I looked at the testing each one required and went for the small facility to avoid being a lab rat. Unfortunately being diagnosed with cardiac issues, gastrointestinal, and neurological it has been agreed on that Mayo is the place for me to get the most detailed understanding of all the layers of medical issues.

So in the car dear hubby asked what exactly they’ll do to me at the Mayo Clinic. I wasn’t much in the mood to discuss it so in true to form for me I digressed to what was on the radio.

We went over the meaning of Night Ranger’s Sister Christian. Just in case anyone asks you it is NOT about a girl who is conflicted about becoming a nun, damn misleading 80’s videos. It was actually written by the drummer about his coming of age sister (Chrissy) who was ‘motoring’ around town with the wrong boys.

Okay, now I am ready to talk about it… From my conversation with the clinic and from a few friends from my support group who have gone for Dysautonomia I have a general idea of what to expect.

My week or two will consist of lots of tests. The basic labs and then a slew of tests I have already done will be done again and compared. ECG, EEG, empty gastric study, stress test, and TTT (Tilt Table Test).

The TTT is very common in the world of Dysautonomia and it isn’t a fun one for us. I am not looking forward to doing that one again. This little short range of movement shown in the pic below causes a person with an autonomic dysfunction all kinds of crazy havoc. Some pass out, for me it caused irregular changes in my blood pressure, heart rate and rhythm abnormalities and near syncope.

My description of it would be a sensation that mimics a roller coaster.

 

graphic is from the Hopkins website

 

The big hope is to forever squash the pacemaker debacle. For anyone who has followed for a while I have a few specialists (2 EP Cardiologists, Dysautonomia Specialist and a local Neurologist) and they all believe I have a different form of Dysautonomia and have very opposing beliefs on if I need a pace maker and defibrillator to keep my Inappropriate Sinus Tachycardia and Bradycardia in a safe range. I am kind of tired of sitting in on them while one reads the last report from the other.

I personally thought it should be settled in an octagon, apparently the Mayo Clinic was a better option. (wusses)

One of the cool tests is the Quantitative Sudomotor Autonomic Reflex Testing (QSART). The purpose of QSART is to test the small nerve fibers which go to the sweat glands. It to stimulate your sweat glands to see if the nerve and gland respond with a normal ability to sweat. Sounds fun…

pic from the University of Pittsburgh
Neuromuscular Disease Division

 

A new test for me, and my local Neurologist is down right excited over it, is the Thermoregulatory Sweat Test. A gold powder that changes color with sweating is applied all over the body. So yes, I will be gold dusted and pretty much think I will look like Angelina Jolie in Beowolf. Oh and I should add my doc is geeky excited over a cool test, not that I will be dusted with gold, the hubs is kind of digging the gold idea…

I edited for PG rating from Film and Digital Media on Blogspot

 

I will then enter what has been described to me as a giant tanning bed that gets really hot. It slowly increases temperature, which will eventually will make me sweat. Digital photos document the results and apparently how I sweat will help confirm what is happening to me and why.

image is from the US National Library of Medicine

 

Now why in the world didn’t I pursue this first you ask?!?!

Because even the Mayo Clinic doesn’t have a secret formula to cure or ease Dysautonomia. I am in the hopes the tests will lay out, very specifically with no room for interpretation, what type of Dysautonomia I have and possibly why I have it. My mother suffers with this condition, as does my daughter and more likely than not my sister and cousin. I hope that I can get answers that will help all of us receive the care we need.

I will keep you posted, until then I will remain Just Mildly Medicated.

Friday’s Letters: Celebrities in the Hood!

February 15th, 2013 by Carrie, the Just Mildly Medicated gal

I don’t do writing prompts often, and when I do I usually break all the rules anyway…

So instead of  “Five People (from any time in history)You Would Like to Have Dinner With” I have chosen to give my top 5 ALIVE NOW (no dead people, that’s yucky) celeb families I’d like to move into my neighborhood.

Dear celebrities that I would like to move into my neighborhood,

While I have to admit I have a pretty awesome crew of friends I wouldn’t mind any of these families being new additions around the corner. It will be great, we can bring each other meals when we are sick, have Moms Night Out and even host some football parties and stuff. I am not the interview type and I am not looking to touch your sleeve or anything creepy. Just solid book club and family friendly block parties. So if you are looking for a new place let me know.

Thanks for considering my hood,
Me

Drum Roll Please:

The Affleck- Garner crew-

Are they not the BOMB!?!

The Hasselbeck crew-

I would even be cool enough to say “Hey, umm guys…
you have something right there… yeah on your lip”
pic from http://milksociety.blogspot.com

The Spelling (or is it McDermott) crew:

My hood needs more people
walking a leashed goat and wheel barreled kids!
pic from from US Weekly
The Shields crew-

aboutmovies.com

The Fox crew-

“A Funny Thing Happened on the Way to Cure Parkinsons’ Event

So, who do you want in your hood?

Being your own Medical Detective (because it sounds cooler than Patient Advocate)

February 12th, 2013 by Carrie, the Just Mildly Medicated gal

When you have a chronic illness you tend to see numerous doctors. The first few years can be especially difficult as you will more than likely see multiple specialists in multiple fields before settling in on your team. I am still in the process of finding my dream team and being an Army wife I am destined to start this exhausting process again in a new location at some point.
I am used to collecting my medical records, especially test and lab results. Before being diagnosed with Dysautonomia this was just something we did to help make sure our medical history, mostly kids immunizations, weren’t lost in the shuffle of moving. Now it serves more of a purpose. I am my own patient advocate, I mean Medical Detective or maybe I will call myself a CSI, Chronically Searching Investigator.

If you need to become your own Medical Detective or you are responsible for being the detective for someone you love here are a few tips I have learned along the way. If you have others please post them in the comments, I’d love to hear your ideas:

  • Take notes and ask for clarification on anything you don’t understand.
  • Ask for a copy of your records regularly (including labs and tests).
  • Be calm and polite but always ask about discrepancies or things still unclear.
  • You are not a doctor and should not diagnose yourself but you are resourceful, look up terms you are not familiar with. Use credible websites, Mayo Clinic is a great resource.
  • Keep an updated printed list of all medications and dosages.
  • Call the insurance company with any questions regarding coverage.
  • Keep loved ones in the loop. They don’t have to know every detail but another family member, friend or neighbor with a copy of your diagnosis and medications could be a life saver.
  • Do not be afraid to dump a doctor that isn’t working out for you. If you’re a Medical Detective it is possible you can do so with reasons given to both the office/hospital and your insurance company that could be beneficial for others.

I will say there was a time early on during my diagnostic phase that some of the people closest to me thought I was going bonkers reading and re-reading tilt table test results and comparing blood pressure and heart rate results sitting verses standing. I know my husband at one point really wished I would put the records away and stop looking up medical terms online. I will say I am glad I poured over those records; it was how I knew the right questions to ask. Some of those questions led to the end of my seeing certain doctors and the beginning of my finding new ones.


The case of the Potassium Cover Up:

In November I was admitted to the hospital for bradycardia (slow heart rate).  I was observed and kept on my regular medications and was told my potassium was “a little low” and given a potassium supplement. I didn’t think much about the whole visit until I was having the same symptoms again about 2 months later.

While waiting to figure out what was happening I was going through my Facebook news-feed hoping to be entertained. I then saw an update from one of my favorite chronic illness bloggers.

“Two days without a potassium supplement (script ran out) and worst arrhythmia I’ve ever had, actually started thinking I might have to ER it (and as long time readers know I avoid that like the plague, see link below). Started taking it again and arrhythmia is gone. I knew Florinef could drop your potassium quickly, but this is the first time I cocked up and didn’t have the new script on hand. Lesson for the day for anyone on Florinef, potassium supplementation (either high K+ diet and/or pills) is damn important. Even the beginning of hypokalemia is not fun to deal with.” Living With Bob

Umm, I am on Florinef, my potassium was “a little low”… I stopped taking it because it was HUGE and no one stressed it was important at all. My getting the potassium supplement was a bit more like ‘we don’t know what to do with you here is a supplement’.

After a few questions and some checking lab records sure enough, when I was hospitalized my levels were low enough to be considered Hypokalemia. Hmm, might have been nice if someone mentioned that. I was able to avoid another hospital stay with the promise of getting right back on the potassium.

The case of the Ever Elusive Diagnosis:

I admit that Dysautonomia is a difficult to diagnose and treat due to lack of knowledge, but a main frustration is that it seems like I can never get any two doctors on the same page. When I visited the Center for Autonomic Dysfunction we went over many overlapping and secondary conditions, the final outcome was Dysautonomia – Pure Autonomic Failure.Pure Autonomic Failure (PAF) or Bradbury-Eggleston syndrome as defined by the Rare Disease Network, is a peripheral degenerative disorder of the autonomic nervous system presenting in middle to late life, and affecting men more often than women. The disorder appears to be confined to the sympathetic and parasympathetic nervous systems. However when looking over my latest records from my local Neurologist I found this:

Now I do have Dysautonomia and it is true that my mother and daughter have been officially diagnosed and it is my belief that my cousin and sister also have some type of Dysautonomia, however Familial Dysautonmia is a completely different type of Autonomic dysfunction than what I have been diagnosed with.

In closing ask questions, keep records and expect answers. If you can add in a smile it will go a long way!


4/4/2013 AN UPDATE: 

After some time and effort I have a medical records book of my Dysautonomia journey to bring with me. Separated by medical specialty, tests, and labs … this is where my healthy friends think I am OCD and my chronically awesome friends want to hire me to do this for them ;)

Parenting from the couch

February 5th, 2013 by Carrie, the Just Mildly Medicated gal

I am nestled in my cozy spot on the couch wearing my warm PJs with my youngest curled into me as I write this. Your first thought is “lucky”. That would be my reaction if it wasn’t me stuck on the couch the majority of every day.

After being diagnosed with Pure Autonomic Failure (a type of Dysautonomia) I spend a lot of time of the couch. Now I have good days, good weeks and sometimes even a good month but the reality is I clock most of my time parked on the couch surrounded with a laptop, iPad and an adorable 4 year old.

The thing I do regularly now that I never thought I would do…
I parent from the couch.

There are obvious parts of parenting from the couch that are not recommended. I don’t like that my kids usually bring me their homework instead of me going to them. I don’t like that on more than one occasion (daily) I raise my voice from the couch to referee some type of dispute when I know it is more effective to go to my kids. I don’t really like that my four year old and I are still in PJs. Now any of those are fine sometimes, but every day and trust me it gets old fast.

I will say this parenting from the couch includes a lot of reading and hugs, that part I am a fan of. When I find myself needing to parent from my cozy spot here are a few of my favorites:

 

  • Cuddle and watch movies (good with kiddos and the man)
  • Reading (to kids or just all for me)
  • Write a book (or half of one if you’re like me)
  • Color (as long as you have a coffee table or are not afraid to lose a few crayons on the couch)
  • Play American Idol (kids sing for you, you tell them they are going to Hollywood… or that they are pitchy)
  •  Age appropriate printable worksheets (9 year old sees this as punishment, 4 year old loves it)
  •  Headbandz!! (I mean other board games too but this one is just too easy!)
  • Watching some really great kids programming (and some Scooby Doo… my youngest wants to solve mysteries)
  •  Couch Cushion Fort… need I say more??

 

 

Hubby “Is there anything you’d like to do today, anything I can do for you?”
Me “Umm, how about a couch cushion fort, like a big one, one for me not the kids.”
Hubby “Sure”
I love him

Now for clarification I can get off the couch, I just don’t know how many times I can without becoming symptomatic. Some days are better than others but most days I am found in my cozy spot that cradles me until someone needs me (blood or starvation are the usual motivators).

So let me know:

Are you chronically ill and stuck parenting from the couch? What are some tips?
Are you well and need to get off the couch and get involved? What’s your plan?

Fridays’s Letters: Morning Announcements, Lights and The Brady Bunch

February 1st, 2013 by Carrie, the Just Mildly Medicated gal

Dear Children,

Yes, I make announcements. At some point during the day I try to keep an even tone without being a creepy mom and say, “There will be no running, no yelling, and no playing anything in the house that includes running, yelling or touching for that matter. Please pick up after yourself. Reminder; you will be asked to help clean up at some point, please refrain from eye rolling and huffing as you know it is coming already it should not surprise or depress you.”  After a few slouches and huffs I reply, “Yes, I am aware these are the same announcements every day. Yes, I am glad you understand these are the same announcements every day.”

So if you find this as redundant as I do WHY ARE YOU RUNNING IN THE HOUSE?

Confused (because I have faith that you understand),

Me

Dear First Grade Curriculum,

Let’s start covering the conservation of electricity, I could use the help. I will say curriculum, I know it is not your burden alone but during my announcements I have added “and turn off the light when you leave the room” in response to EVERY LIGHT ON THE MAIN FLOOR BEING ON. I added in my spiel “I know you guys cover electricity and water conservation in school.”  My 4th grader said yes and rattled off ways to conserve on both water and electricity, mind you this is why I have faith that you guys understand. Our 1st grader, in a very serious tone, added “That is not part of 1st grade education.”

So in hindsight you probably are covering it, maybe we need some coloring pages…

Wasted Energy,

Me

Dear Brady Bunch,

Y’all really are timeless. My boys were channel flipping and watched 2 classic episodes. They actually liked it. I mean after they were done mocking the hair, the clothes and the 70’s-isms… there really is a lot to mock. Point is they got it; the family dynamic and the problem and resolution. We had a good conversation.

 

The part that got me though was when 1st grader said “If we had 2 more kids and an old lady that cooks we would BE the Brady bunch!” Okay clearly he wasn’t paying attention to the opening song… pretty self-explanatory. Then 4thgrader chimes in with “We could have foster kids and maybe Betty White could be the cooking lady.” Umm wow…

 

Lost in Brady Bunch Conversation with Boys,

Me