Category Archives: psoriatic arthritis

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!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Disabled Diva’s Blog Weekend Recap March 4, 2019

 

 

 

 

 

 

 

 

 

The Disabled Diva’s Blog Weekend Recap!

March 4-8, 2019

Tears: I hold them back, until pain pushes them out

Spring Clean Your Chronic Life

Mobility Aids: Everybody uses them

What I have learned from using PEMF daily for two years!

*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.

Hey psoriatic arthritis buddies or caregivers!!!

Could you please spare a few minutes to take a survey that will help create beneficial programs for the psoriatic disease community?
Click here to take survey
Thank you!

 

 

 

Spring Clean Your Chronic Life

 

 

 

 

 

 

 

Think spring cleaning only involves giving your home a good cleaning?

Think again!

Disinfect Your Diet

Clean up your personal care products

Spruce up your view!

Spring Cleaning doesn’t have to be painful

Sanitize your social circle

Five ways to make your home chronically safe and friendly

Scrub away negative thoughts

Spring Clean your social media feed

Cleanse your calendar!

 

 

Spring Clean: Disinfect Your Diet

 

 

 

 

 

 

 

Disinfect Your Diet

Now, before you roll your eyes and think “oh great another eat your way to health blog post”, understand that I do not believe that diet alone can cure or improve a disease, chronic or otherwise.  I do however, believe that everybody could feel a little better or at the very least, not any sicker, if they would hunt down their dietary triggers and avoid them.

Whether you have a chronic illness or not, whether you think food is contributing to chronic pain and fatigue or not, everyone should take a look at what they are eating.

*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.

I am not pushing an all juice diet or cleanse.

I am not suggesting that everyone should be vegans or vegetarians.

I am not suggesting that everyone cut out gluten, dairy, meat, etc.

Instead I am going to share a simple plan that I used to identify my food triggers.

 

Log it

Create a spreadsheet or use a journal to record everything you eat.

Record daily, how you feel when you wake up, midday, and in the evening.

Note how many hours of sleep you achieved and how you slept.  Did you need a nap?

How is your mental health? Note what made you happy/sad/depressed/anxious/etc.

 

 

 

 

 

 

 

 

 

Find the culprit

Refer to your food journal whenever you notice that you’re experiencing increased pain, inflammation, rashes, headaches and/or fatigue.

If you have noted a day with increased inflammation, look at what you at before you noticed.

Compare that with the days prior and after to see if it happened again.  If it did, compare what you ate.

You may be someone who doesn’t feel the effect of a food right away.  In that case you may want to look back a day or two.

If a particular type of food doesn’t jump out, look at the ingredients of what you ate instead.  There was a time when I thought I had a gluten intolerance, yet it didn’t make sense because not every gluten product bothered me.  I researched further to discover why.  The results were that I didn’t have a gluten intolerance, but instead high fructose syrup turned out to be my fatigue/inflammation/pain trigger.

 

 

 

 

 

Cut it out

Once you find the food type or ingredient that your body doesn’t tolerate, you will want to eliminate it.  In my case, I didn’t have to give up bread products.  I do however have to make sure that any baked goods I do eat wasn’t made with high fructose syrup.  I find it best to play it safe and avoid it when in doubt.

Variations

Diets are not one size fits all.  Not everyone should avoid dairy, meat, baked goods, etc…  However, to speed up the process of finding your triggers you may want to follow a restrictive diet at first.  This will limit how many different foods and ingredients that you are having to compare.

I would give each diet at least two weeks before adding other foods back in.  Here are a few diets you may wish to try:

 

I chose to start with where I was at and how I was living, by not following any specific diet.  Personally, I found it faster and easier.  Another plus is it was a real reflection of how I ate and lived.  My results showed that I experienced more pain, inflammation, and fatigue when I consumed high fructose syrup, artificial coloring and flavoring, and high levels of citric acid.  I further discuss this process in my ebook Make Pain Your Bitch: How to Dominate Your Chronic Life

Choosing to avoid your triggers isn’t going to cure you, but it will make your life less painful than it has to be.

What foods or ingredients are triggering your chronic symptoms?

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