Tag Archives: advocacy

Improve Your Medical Relationships and Know When to End Them

It is unfortunate that this conversation keeps coming up with various people connections.  I am fortunate to have found a wonderful nurse practitioner who is caring and cares about my natural lifestyle.  My kids pediatrician doesn’t out right reject it and I am determine to convert with each success.  Our additional successes in therapies and treatments have set a core belief in an integrative health approach.  However, we have had incredibly negative experiences and these are a shared experience.  Ghost child’s visit last fall with her ENT was disastrous.  From a dismissive and massively insensitive doctor to a nurse who told my daughter she needed to behave so she will not “end up with hearing aids and people look at her funny.” You heard that right.  Oh, this ate at me for months.   This isn’t the first time either, I have heard from the hallway “give her what she wants.”  We never went back there either. That’s toxic and that toxicity leaks out.     It affects your physical being directly, possibly directly your mental health.  Been there.  Being able to communicate with your doctor affects your emotional and soul health too.  When things don’t go right, a variety of negativity seeps in and can take over.  From discouragement/despair to trust to hope- you ability to find success in a doctors visit for you or someone you love effects everything.  Make your visits work for you and find the medical professionals who want to help you.

It’s a 7 Step Thing:

1.  Write everything down- every freaking detail.  Symptoms, sleep patterns, language, bowel movements, sensations, school/home/work performance, breathes wrong, any odd thing. Write it down and share.  Let the medical professional sort it all out.

2.  List medications and supplements.  Or take pics.  I take a lot of supplements and they might interact with other medications.  I took a picture of each one and it already has the dosage on the front. Easier on the both of us.

3.  Ask for explanations and lots of whys.  Whys like a four year old. Get an understanding of tests and results.  If your medical professional gets annoyed see below.

4. Get a folder, carry it, and get copies of everything.  EVERYTHING.  I mean, EVERyTHING.  You never know what you need, when you need, or why you need something.  Get a copy then or by mail.

5. Go with you gut.  Even if it seems crazy to whomever you are talking too.  I used to be shy about sharing my concerns and deep instincts.  It has bitten me in the ass.  Don’t hold back but be respectful.

6. If follow up is required, DO. Call back if you do not hear back within time they have specified. If they didn’t specify, it’s carte blanche.  Be respectful at first.  Then you can get assertive if you must.

7.  Use reminders- paper or technology.  You have a lot going on and follow up is difficult to follow up with.  Set reminders because number six is significant. I have had major fall throughs.

So what happens when you have jerks you encounter? Power of second opinion.  Or third even.  I have sought a third 🤚.  The extent of your power of second opinion does depend on a few things: your financial resources, insurance company guidelines, time, and mobility.  We are fortunate to have health insurance; however, it does require phone calls, member website research, and lots of detailed reading to know what our rights are.  Finances, time, and mobility spread out visits and progress may not be as fast.  Work with what you have and call who you have too in order to make it happen.  Those awful experiences that occurred are ABSOLUTELY unacceptable.  For those who share similar experiences, it’s ABSOLUTELY unacceptable for you too.  Get that second opinion. Additional to that second opinion, these offices do need to know when things or they go wrong.  Our last experience fell on deaf ears in a place that serves those with ear/hearing issues.  That irony is not lost on me.  After I knew we had a second care provider, I took to their social media and review sites.  At least I can warn those who might follow us.  Your voice is your power.  You cannot control their choices, but you can guide them.  I would not recommend leaving a negative statement without communicating it directly first to the professional or leaving the practice altogether.  Have a positive note? Spread that every where.

This is in preparation, being reactive, and getting proactive.  Get on medical review sites, ask a trusted medical professional, and check with your insurance company when looking for a medical professional.  Ask about board certifications, malpractice suits, and read patient reviews.  Use your judgement and gut.  If you are going to use social media for recommendations, please write specifically what you want in that doctor and ask for specifics as to why a person is giving you that recommendation.

Don’t lose hope.  We have spent years working through the hearing loss, pain, testing, language disorder, and more malfunctions.  That’s just one kid! We have us and other children too.  TMost people interact with a medical professional as some point in their lives.  Please share this post.  And subscribe to notjusthealtnuts!

Namaste and open the communication lines

I want to say this sharing is because of recent events.  In honesty, these losses are indicative of a pervasive reality.  Mental illness is tucked in many corners of humanity, no one is immune.   In a little more than a week I am sharing the story behind my tattoo.  My story has much to do with my mental illness and my victory in my journey.  However, yesterday in the physical pain, fatigue, and mental frustration, I know all too well how quickly I could slip.  Therapy, chemical stability aid, inspiration, and reminders are necessary.  My tattoo is my permanent reminder.

IMG-0456

The largest part of my tattoo is a Lotus.  This flower is unlike many others, its survives in a wide range of temperatures and muddy waters.  I am a wife, mom, advocate, friend, artist, writer, sister, daughter.  Roles built over time and ones that I cherish.  With that I am a survivor of abuse and the social taboo it comes with.  I’ve been told that I shouldn’t share that part of my life because it would make others uncomfortable.  Then I became further isolated.  Anxiety and depression were the roller coasters of much of my life.  Panic attacks and withdrawn.  I felt voiceless.  I am a medical illness hurdle jumper with stumbles here and there.   I am an ADHDian.  It’s been a wide range in my life.  As a conqueror, I am not just blooming.  I am changing.  The butterfly right up on my shoulder symbolizes that crucial mindset of transformation.  I can and do choose to change how my past and current situations are used.  They do not wholly define me.  Written below all of this is 2 Corinthians 5:17.  Those are words I have held dear to for years.  Those words remind me that my Creator designed me for a great purpose and, like a lotus, my roots are deep to thrive despite the mud.  The act of creating is a process.  It takes time, effort, and there are mistakes.  Through the transformation and healing in mental illness, it is a similar process. My creation is flawed, but valuable all the same.

Here’s the thing.  There was a time the darkness was deep.  I didn’t believe in the value of my life and my silence festered the wounds.  It was baby steps, but I found that last shred of strength and sought help.  In the battle we need allies and professional ones.  If you are in that darkness, keep one foot in front of the other with hands out.  We need you.  There’s isn’t another you.  Seeking help isn’t weak, it’s boldness.  You have it in you.  To take it further, I have taken medication in the past to help me.  I found a natural path that works best for me.  It doesn’t matter the means: talking, breathing, medication, supplements, or do all of it.  Grab a hold of your life line.  My hope is that one day your story will become a tattoo, artwork, song, writing, oral story that will empower you and empower others.

Additionally, we need advocates.  Our perceptions on people with mental illness need to change. Perceptions on the illnesses themselves need to change.  The health care system needs to change.  Our interactions with each other needs change.  A simple start is giving grace, checking in with those around us, and be present.  Compassion and deeper connections are imperative.  Become aware of yourselves, others around you, and share resources for help. Be that shoulder.  Make that call.

As always, my soul honors your invaluable soul

Life Lines

National Suicide Hotline 

  • 1- 800- 273- 8255 Hotline
  • 1-800- 799- 4889 TTY Hotline
  • Suicide Prevention Website (online chat option and specific areas of help)

Crisis Text Line

  • Text Home to 741741

Domestic Violence

Sexual Assualt

Postpartum Support International

 

Laundry Detergent Made Me Itch: Foodie with Allergies

As a foodie with food allergies I feel that any packaged product is potential death waiting to happen.  That might be a bit dramatic.  Seriously, my step son with bakers dozen food allergies and I of a few call certain products boxes of death.  Largely, because it is. Shockingly it gets worse, food allergies are NOT just in the food aisle. They lurk every where.   As a matter of frightening fact, companies can pretty much put any claim or statement on their product with little to no accountability.  There is one major Federal law to “protect” us foodies with food allergies.  Thank you foodallergy.org for informing us that only eight allergies have warning labels on a certain number of food products.  If you clean with it,  take a prescription, take an OTC, put it on your skin, has a kosher label, or smoke it (ew) then a company is not obligated to tell you when an allergen may be in their product.

Lesson one is read labels on household products but they are not required to have a warning label.  We learned this the hard way with lotion containing almonds and hand wash with casein (milk protein).  It was right on the ingredient label and we just didn’t think. Have you read their labels? I decided not to become a chemist for a reason.  Read labels and learn the chemical names.  Especially when it comes to cosmetics.  Speaking of,  lip balm and lip glosses may contain fish oils.  Watch for that.

It isn’t always on a label either.  After taking on the GF life, I was still reacting as though I was still eating gluten.  As wise sage informed me that it may be my laundry detergent.  She was right.  Water and flour are suspected added as fillers.  We switched to a concentrated, natural product and the reactions stopped.  Along with the laundry switch and a reading/investigation about peanut oils in products, cleaning products were changed too.  I like my house clean but don’t want to put my sons life at risk.  Lesson two here is: if you have an allergy and have removed it from your diet, chances are its in a household or self care product.  “Get rid of it” instructions below.

Other scary food allergy things

– Play dough contains wheat

– Marzipan is made from almond paste

– Worcestershire sauce contains fish

– Soy sauce is blatantly out there with having soy

– Read supplements and vitamin labels.  Example, many joint supplements contain shellfish

– Ask before you vaccinate- some contain eggs

 You have the PSA.  Food allergies are everywhere.  Practice food allergy safety- know chemical names, read labels, and listen to your body.  If you are reacting as though you have a food allergy and you haven’t eaten it, it may be skin deep. Or more.  Take away whatever you suspect for two weeks (takes that long to get out of your system) then keep it away if you get better or you can “challenge” by adding it back to see if the reaction happens again. If the reaction is severe or life threatening, don’t play chicken and stay out of challenges.  If you aren’t sure if you are reacting or why or the reactions are severe, see an allergist.

Namaste and Share for the Good of other Allergy Foodies

The Ghost Child

This is where is our story didn’t begin.  This is where I realized that after years of teaching with special needs, years of advocacy with other families, and years advocating for myself and daughter it was time to be vocal.  This is part of our story and there is more to come.  My hope is that you will share your story too.

*orginally posted January 10, 2017

It’s been so cozy in our glittery wonderland of bubbles and glitzy paper; however, the holiday tilt a whirl has abruptly told us to get the hell off.  The ton of brick of sorrow and fury hit full force today.  It’s not a new or sudden burden, but a reality being acknowledged and denied all the same.  For years, I’ve been told “she’s okay,” “there’s nothing wrong,” “we don’t see anything.” My daughter is the ghost child.   You see the specter but right through her because you don’t see.

While my daughter is “okay” she’s not “okay.”  This morning’s event has continued months of agonizing, acceptance, determination, reflection, and writing.  In reflection, I keep going back to her preschool years when I literally thought I was going to lose my mind. Literally everyone indicated that there wasn’t anything wrong.  It kept nagging as we stumbled through doctor visits, late nights, and uncertainty.  Confirmation was something  as a parent I needed and few offered their compassion. Most dismissed us.  As it turns out she did and does have hearing loss. When those tubes fall out for the third time, we will be vigilant and awaiting our battle. I’m tired of being dismissed.  I’m not the only parent who has experience this or feels this way.  I hear you. Your anguish.  Your need to be heard.  Your unique dynamics in need of being understood.

In truth, to those who dismissed our cry, I’m angry with you for being so ignorant and uncompassionate.  I’m livid at myself for my lack of self value to better advocate for her. Those bricks hurt like hell as I watched my daughter shut down in testing today, near tears, just so we confirm what we already know.  It seems like torture for her to go through this. She has been coping but those threads are unraveling.  We shouldn’t need confirmation; we need solution. We see all of her. Her uniqueness, talents, struggles, temperament, and yes, her disability.   We won’t let our ghost child come undone just so you can “see it.”

It hurts to watch her struggle and dread basic tasks.  It hurts to lose our cool when we don’t understand why she can’t be like our other kids.  The guilt on days that we can barely handle it.  It hurts to know something isn’t right and feel like we need to be committed to a psych ward because no one else sees it.   While we are still in the phases of testing and evaluations, the instinct is stronger than ever.  Our creative and insightful ghost needs more to be better understood. She needs more of me and she needs more of you.

Stop dismissing the ghost children.