Category Archives: fibromyalgia

Why I fear doctors, hospitals, and test results

Why I fear doctors, hospitals, and test results

 

 

 

 

 

 

 

 

Why I fear doctors, hospitals, and test results

Since my first chronic illness diagnosis in 2001, my life, that is my chronic life, has been nothing short of a nightmare.

I know my body well.  In fact I know better than any test or doctor.  Not to sound conceited, but not one test or scan has ever shown the destruction that has been taking place in my abdomen since 2003.  NOT ONE!! However, my theories have been validated in surgery and each surgery was proved necessary.

Before you suggest that my fears aren’t warranted, I need for you to understand something…… I do not have White Coat Syndrome, where patients experience a higher blood pressure reading when at the doctor’s office, it goes way beyond that.  My fears and phobias stem from incompetent care.  Not from just one doctor or surgeon, I am talking double digits!!!

In case that is not enough of an explanation, here is a list of some of the reasons I fear doctors, hospitals, and test results……

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Make your bed more comfortable for under $50

How to make your bed more comfortable for under $50

 

 

 

 

 

 

 

How many nights do you lie awake wishing your bed was more comfortable?

Even with an amazing pain management plan, discomfort in bed has the ability to derail my attempt to sleep, interrupt my slumber, or increase my morning pain level.

Does this sound familiar?

Look, I get that not everybody has thousands of dollars just waiting to be spent on what feels like a selfish purchase, but that shouldn’t stop you from getting a good night’s sleep.

First, never allow yourself to think or listen to anyone who tells you that purchasing items to make it possible to sleep better is a selfish waste of money.  A bed might just be a bed to someone who has never had to recover from surgery or was bedridden for weeks, months, or years from chronic pain or an illness.  But for those of us who have, we KNOW that a comfortable bed plays an important role in our daily lives.  That without reaching a restorative level of sleep, our pain increases and our productivity decreases.

Now let’s take a look at some products that are all priced under $50 and that will have you looking forward to going to bed instead of dreading it……..

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Spring Clean Your Chronic Life: Scour Your Social Media Feed

spring clean your social media feed

 

 

 

 

 

 

 

 

It is time to apply some good old fashioned spring cleaning to our social media accounts.

Have you ever noticed a change in your emotions after scrolling through your Facebook, Instagram, or Twitter feed?

For example, maybe you were feeling down but cheered up after viewing some encouraging memes.

If happiness were the only emotional outcome of scrolling through social media, then I wouldn’t be writing this article….  Too often social media leaves people feeling depressed, anxious, unworthy, or angry.  These emotions, while normal, can and often aggravate chronic pain.

The good news is that there is a way to overcome it!  Read on!

*Disclosure: I am not a medical professional. I am not issuing medical advice. Consult with your doctor before making any changes to your diet or treatments. This post contains affiliate links. Meaning that, at no additional cost to you, I earn a commission from purchases made through my links. These pennies fund the giveaway funds for my Facebook Groups.

online therapy

 

 

 

So what do you do when what your friends and family post on social media has a negative effect on your mental well-being?  You take control!

Here are five options for taking control of your social media feed and emotional health.

Choose wisely

Don’t scroll through your feed.  Instead only visit the pages of the people and or businesses that won’t instigate unwanted feelings.  Need a pick me up? Visit the accounts of those who often brighten your day.

Get help

As I stated earlier, it is normal to feel the feels that many social media posts invoke.  However, if you find that you are unable to let go of them, they consume your mind, or they are affecting your health, it is time to get help.  I am not saying that everyone needs to seek out therapy, but if you find yourself drawn to posts that increase the intensity of negative emotions there is a problem.

Hide

You love your Aunt Sally, but she every day she goes on a political rampage.  Her posts are angry and hostile, which leave you feeling the same after viewing them.  Guess what?  You don’t have to endure those posts!  Do yourself a favor and hide her posts from your timeline.  Facebook allows you to be friends with people, yet to also NOT follow them!

To make sure you aren’t missing anything important, you may want to pop over to her page once every blue moon to see if she has posted anything of importance.  I have assigned someone to check the pages of those who trigger extremely unpleasant emotions for me.  It doesn’t bother them and it makes my life so much better.

 

 

 

Unfriend/unfollow

If hiding their posts doesn’t work, you may have to unfriend or unfollow them.  I save this option for those who lack personal boundaries.  For example, you can post whatever you want on your page.  I have the right to not go there and see it.  But you cross a line when you continually tag me or post your vile content on my profile page.

Just because you are related to someone or are friends, it doesn’t mean that you have to be their social media buddy too.  If socializing with them online is going to send you into a panic attack, cause you to socially withdraw, increase your blood pressure, or cause you to go into a rage, let them go!!

By the way, if the people in your life are the cause of negative emotions or activities, please seek out help with a therapist.  They can help you determine which relationships can be saved and which are truly toxic.

Leave

Your last option is to leave the platform that leaves you with the most destructive of feelings and thoughts.  Having a social media account isn’t a requirement of life.  Yes, they provide an easy way to keep in touch with and to connect with our friends and family on a daily basis, but if they are creating a problem for you, let it go!

 

 

 

 

 

 

 

 

 

 

 

 

 

Feelings of sadness, anger, etc. are inevitable.  However, if you find that those feelings are becoming a way of life or all that you feel, there is a problem.  The answer isn’t threatening people to only post what makes you happy or to unfriend you.  The answer is first finding out if your reactions are typical, second recognizing just how much you can handle, then last but not least, taking action to protect your mental health.

With that said….. Before you decide to take a social media vacation, be sure to subscribe to my blog! I would hate for you to miss out on a blog post just because of a few rotten apples!  Click here to subscribe!

Click here to read my entire Spring Cleaning series

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

HOW TO SPOT SOMEONE WITH A CHRONIC ILLNESS

HOW TO SPOT SOMEONE WITH A CHRONIC ILLNESS

 

 

 

 

 

 

 

HOW TO SPOT SOMEONE WITH A CHRONIC ILLNESS

Grab your binoculars, looking glasses, and detective kits, because today I am going to share how to spot someone who has a chronic illness!

Make sure you a have a pen and notepad ready to take notes, because what I am about to share will help you spot one of these mythical creatures with your own eyes!!

Are you ready to begin your chronic illness manhunt?

Then let’s get started……

Just kidding!

If you haven’t figured it out by now, I am just yanking your chain.

There is NO way to spot a person with a chronic illness without getting to know them.

I am sure you have heard the phrase “You don’t look sick”.

Those of us who ARE chronically ill despise this phrase.  Not because we don’t like looking well, but because that phrase is often used to downplay the severity of our disease.

Look at the picture below………

 

do I look sick?

 

 

 

 

 

 

 

 

 

 

This was taken at 9:30AM on March 17, 2019.

Do I look sick?

NO.

Yes, I am overweight and maybe appear a little tired, but for the most part there is no way, from just looking at that picture, to determine what chronic illnesses I have and which are flaring.

*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.

What you don’t see

Here is what you don’t see:

  • A spider web of abdominal adhesions pulling and twisting the internal organs I have left.
  • What feels like my intestines being tied into a knot
  • The vomit I am forcing to keep down
  • Nausea
  • Contractions
  • Psoriasis that is breaking out on the areas of my body that are most stressed at the moment.
  • My Oska Pulse, under my shirt, reducing the amount of abdominal pain I must endure because of adhesions caused by years of endometriosis, surgical scarring, and pain from surgical errors.

 

What isn’t bothering me

This is what people assume is bothering me when I say I am having a rough day. These conditions that practically crippled me after 12 years are well managed. They do not and have not been a major issue in the past two years, yet that is the assumption the minute I share that I am struggling.

  • Psoriatic arthritis
  • Fibromyalgia
  • Degenerative disc disease
  • Coccydynia

The chronic pain that these chronic illnesses produced were why I spent so much of the first twelve years of my chronic life in bed.  They are why I couldn’t walk, stand, or sit for more than five minutes.  Thankfully I have an amazing pain management plan that addresses the pain and symptoms from these illnesses, making them minor issues compared to what is going on inside my abdomen.

What I choose to hide

  • Fear.
  • Fear of incurring more internal damage
  • Fear of living the rest of my life with pain that just can’t be explained
  • Fear of dying
  • Fear of never enjoying the freedom that a reprieve from all of my chronic illnesses allowed me to enjoy last year.

What to look for

There may not be an easy way to spot someone one with a chronic illness, but there a few signs.

  • Cancelling of plans: Yes, life happens, but if you notice that it is happening more often than not, it may be the result of a chronic illness.
  • Inability to hold back tears.  While many of us, the chronically ill, have developed a thick skin and don’t always wear our emotions on our sleeves, I for one can’t hold back tears when my pain is out of control or I am just plum exhausted from fighting it.
  • Manic behavior, such as wanting to do as much as possible in a short period of time because they fear not having much time left do to fear of life ending or pain returning.
  • Withdrawing from life.  Some people slowly pull away from their friends and family.

The signs won’t be the same from one person to the next.  We all handle our chronic illnesses differently.  How we handle the emotional ramifications will also change throughout the years as our diseases either go into remission or progress.

Don’t judge us by how we look….

Looks are deceiving….

 

 

 

 

 

 

 

 

 

 

 

 

 

HOW TO SPOT SOMEONE WITH A CHRONIC ILLNESS

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The Disabled Diva’s Weekly Recap March 11-15, 2019

The Disabled Diva's Weekly Recap March 11-15 Pictured, sunglasses on green grass next to a dandelion.

 

 

 

 

 

 

 

Weekly Recap March 11-15, 2019

Chronic Life: Does the waiting ever end?

How Charlie’s Angels Prepared Me to Live with a Chronic Illness

The Disabled Diva’s Top Ten Travel Tips

Spring Clean Your Chronic Life: Disinfect Your Diet

Are your spring break vacation expectations realistic?

Spring Clean: Spruce up your view!

*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.

Ending soon!

If you have psoriatic arthritis or psoriasis, or you are or may become a caregiver to someone who does, would you please spare five minutes of your time to take WEGOHealth’s survey that will benefit the psoriatic disease community?  Participants will be entered into a drawing to win one of two $50 Amazon gift cards!  Click here to take the survey.

 

 

 

 

 

 

 

 

 

 

 

 

 

Chronic Life: Does the waiting ever end?

 

chronic life does the waiting ever end

 

 

 

 

 

 

#CHRONICLIFE

Does the waiting ever end?

Living with one or multiple chronic illnesses involves a LOT of waiting.  We wait for doctor appointments, test results, pain relief, cures, diagnoses, people to understand, and so much more….  But does it ever end?  There is no simple answer for this question.

My chronic illnesses which include but are not limited to, fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, abdominal adhesions (from endometriosis and surgical scarring), and coccydynia, have all forced waiting periods into my life when I would have rather not been sitting around waiting.  The problem with all the waiting that has to be done is that waiting then becomes a way of life.  However, as I discovered after the first 12 years after my first diagnosis, there are some things that we shouldn’t be waiting for, like living.

*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.

What are you waiting for?

My early chronic years were spent waiting for answers, test results, and most of all pain relief.  Even though I heard my doctor say “There isn’t a cure, but we can treat the symptoms”, I wasn’t able to accept that I would never be 100% pain free.  I kept waiting for that unattainable dream of waking up without pain and being able to do whatever I wanted.

Although I had no choice but to wait for test results, to recover from surgeries, and for treatments to begin to working, my life was meant to be lived.  Waiting to live caused me to miss out on a lot.  I missed out on many opportunities to grow as an individual, to spend with others, to make memories with my family, and so much more.

In my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life, I share how to live a good life despite your chronic illnesses.  My life didn’t change overnight, it took time, patience, and hard work to create a life that I am passionate about.  Nor did I wait until my pain level became manageable, no I began carving out my new life while flat on my ass in one of the darkest periods of my chronic life.

Chronic pain or any new twists or turns that my chronic illnesses want to take will never hold me back again.  Why? Because I won’t let them.  If my body won’t let me do things one way, I will find another.  If I have learned one thing throughout 20 years of living with my chronic illnesses it is that life should never be put on hold, no matter what I am waiting for.

Waiting room meditations. Buy book

 

 

 

 

 

 

 

 

 

Why are you waiting?

I vividly remember the day in 2013 when I realized that I had been waiting to live.  That I had done nothing with my life since my symptoms began disrupting it.  That, when you think about it, I had lost over a decade of my life.  The heartbreaking part was that I was also raising children who were watching me wait.  Existing was the last thing I wanted my kids to do.

When I realized that I had been waiting to live, I had to ask myself why I did it.  The answer came easily, I was waiting to be healed, even though I knew that would never happen.  Why did I wait so long for something I knew would never occur?  Because, being healed would make what I wanted to do so much easier…….  Friends, that hit me like a ton of bricks….. I wanted life to be easy.

Life isn’t easy for anyone, even those who aren’t chronically ill have their challenges.  Reaching my goals would never be easy or pain free, but instead they would require a lot of hard work and sacrifice.

Take a chance, don’t let the unknown diagnosis or unexpected flare stop you from creating a life that is filled with passion and purpose.

Girl, Stop Apologizing: A Shame-Free Plan for Embracing and Achieving Your Goals

 

 

 

 

 

 

 

 

 

 

What can be done while waiting?

I will be the first to confess that it is extremely difficult to think about the future while waiting on a medical test result or diagnosis.  If you are like me, your mind goes to all the worst case scenarios and not one of them includes a future you can bare to think about.  But we can’t allow the unknown to control our destiny.

Instead of continuing to allow my life to abruptly come to a halt, I began looking at alternative ways to make my dreams come true.  If a particular diagnosis is going to dictate that I can’t do something the way I have, I begin looking for other ways to continue what I am doing.  For example, working from bed doesn’t mean that I am working less than if I traveled to an office every day.  Nor does using a mobility aid make spending the day at Disneyland any less special than when I am on foot.

Currently, I am experiencing a flare up from abdominal adhesions.  Thankfully, my pain management plan is keeping pain from my other chronic illnesses under control, because combined my pain level would be off the charts.  However, the abdominal pain I am experiencing is forcing me to do things a little differently.  Here is how I continue to live while waiting for relief…..

  • I accept assistance
  • Allow for a flexible schedule
  • Use mobility aids
  • Cancel or turn down anything that will derail me from what most needs my attention and energy
  • Practice patience with myself and body
  • Listen to my body and give it what it demands
  • Breathe: I allow myself to enjoy small moments and to be okay with living differently than my friends and family.
  • I forgive myself for not being the perfect, pain free, super woman I wish I were.

What are you currently waiting for? Why and what can you do in the meantime?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Chronic life Does the waiting ever end

How Charlie’s Angels Prepared Me to Live with a Chronic Illness

Pictured Charlie's Angels. Title: How charlie's angels prepared me to live with a chronic illness

 

 

 

 

 

 

 

How Charlie’s Angels Prepared Me to Live with a Chronic Illness

I may have been born in the late 60’s, but I am a child of the 70’s!

One of my favorite television shows of the seventies was Charlie’s Angels.  Not only did I never miss an episode, the following day I would make my friends act them out with me! For those of you who are not familiar with this show, Charlie had a private detective agency and he hired three sexy women that he called angels.  The original angels were Farrah Fawcett as Jill Munroe, Kate Jackson as Sabrina Duncan, and Jaclyn Smith as Kelly Garrett.  They were badass women kicking butt and uncovering mysteries.

I wanted to be an Angel, Jill in particular because, well, hello that hair!!!!!

Little did I know that a show about beautiful, strong, and intelligent women would also give me the “know how” I would need to surviving life with not just one, but multiple chronic illnesses!

*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.

Look for clues

When I was diagnosed with fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, coccydynia, and endometriosis, I had no clue that each chronic illness would lead to a life of searching….

Searching for what you ask? What not would be easier to answer, but whether you have one chronic illness or a slew of them, the life of the chronically ill is spent searching for ways to relieve pain, new symptoms, reoccurrence of old symptoms, side-effects, and treatments. The chronically ill spend a lot of time investigating their bodies, the fluids that come out of them, their mental status, abilities and disabilities.

Thankfully Charlie’s Angels taught me to never give up and that there is always an explanation.  My doctors may have given up, but I will never give up searching for the source of my chronic illnesses.

Trust my instincts

Like any good detective, I have learned to trust my instincts.  I received my first chronic illness diagnosis in 2001 and since then I have had countless tests come back and show nothing wrong when I went in with a complaint of pain.  Thanks to my Angel training I knew not to accept that answer and kept pushing the issue and presenting new clues to my doctors.  In several cases, tests showed absolutely nothing wrong with me, but surgeries revealed the truth.  The findings of each surgery proved and validated my complaints by being something that no test could have ever revealed.

Trusting my instincts has saved my life countless times and will until I am no longer able to speak for myself.  I can never stress enough how important it is to be your own advocate!

Know when to fight

Like a well trained private eye, I know how to protect myself.  While I may not be punching or handcuffing my enemies, I have to fight to receive the care I deserve and need.  I have learned when fighting a doctor about a diagnosis or test is worth my time or not.  Sometimes my energy is better spent finding a new physician.

I have also learned to listen to my body.  It will let me know if the situation is urgent or if it can wait a little longer.  This instinct also helps me get through life.  I have learned what levels of pain and exhaustion can be pushed through and what cannot.

Teamwork works

Living alone, void of any assistance from others when you have a chronic illness is possible, but it’s not realistic.  Whether you are married or not, it is best to have a team.

First you need a medical team that is working together and not against each other.  They and you, need to be on the same page about treatment of the disease and pain.

Then you need your personal team.  You need someone that you can confide in, because trust me there are going to be days when you just need to vent your fears without terrifying your spouse/partner.  My husband is a fantastic team member that I don’t ever want to be without.  He has witnessed the horrific treatment from surgeons and has been there for me at the absolute worst moments of my illnesses.  Other teammates that are beneficial are folks to help with transportation, provide an occasional meal, or to tidy up your home when you are at your worst.   No matter what, you need someone in your life to make you laugh, because without laughter we are only left with sorrow.

Be sure to train one or more of your team to be your patient advocate.  You may not always be alert enough to express your requests or needs.  Having someone who can speak for you when you are unable is invaluable!!!

Thanks to the skills I learned from Charlie’s Angels, I continue to fight pain, solve symptom mysteries, and refuse to give up!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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