Tag Archives: fibro

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!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What Happens When I Live My Old Life

 

 

 

 

 

 

 

 

What happens when I live my old life

I received my cluster of diagnoses during the early 2000’s.  During that time not one doctor urged, nudged, or hinted to me that I needed to make changes to how I lived my life.  Not ONE!!!

Instead of issuing warnings or advice to improve the quality of my life, my doctors insisted that they would be able to find the right pill(s) to offset my symptoms and pain.  Of course everything they tried failed.  Click here if you would like to take a peek at the pain management plan that finally helped reduce the pain I experience from fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, coccydynia, and abdominal adhesions from endometriosis and surgical scarring.

Between the false hope my doctors were issuing and the pressure from friends and family to get better, making changes to how I lived never crossed my mind.  But it should have and here is why:

When I live my old life:

  • I ignore the needs of my body/chronic illnesses
  • I injure myself more often
  • I spend more time in bed than actually living my life
  • My family loses precious time with me
  • I spend more time and money seeing doctors and visiting emergency rooms
  • I took no responsibility towards reducing my pain.  I trusted and followed everything my doctors said.

*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.

Why changes had to be made

  • The longer I ignored the needs of my body/illnesses, the sicker I became and more damage was done to my body
  • Refusing to accept the need to use a mobility aid created more opportunities to fall, which I did often.  Each fall resulted with either a broken bone or blood clot.
  • I was killing myself
  • My family needed me
  • I would rather take my family to Disneyland, then to spend money and time in the emergency room over an injury that could have been prevented had I listened to my body, done things differently, or utilized a mobility aid.
  • I had to take responsibility and to accept that my doctor may never be able to help me.

 

Changes that literally changed my chronic life

  • I made friends with my diseases.  I got to know them and my body so well that I after awhile I could feel the beginning stages of a flare coming on.  In the past, I just pushed until I collapsed.
  • Using mobility aids may have been hard to accept on an emotional level, but when I look back and see how little I have fallen since I began using them, I know I made the right decision.
  • By recognizing and addressing signs of a flare or physical distress I am able to avoid complications like my body mimicking a stroke or muscles freezing to the point of feeling rock hard for months on end.
  • Spending the amount of time that I do in caring for my body, doing things differently, accepting what I can’t do, and letting go of unrealistic expectations has gifted me with less time in bed and more out making memories with my family.
  • I took responsibility and charge over my care.  I researched and tried alternative treatments. While I may spend more money on those treatments than any pill that my insurance would cover, I save by not having to visit my doctor for a refill every month and not visiting the emergency room throughout the year. Click here to read about my pain management plan.

All of these changes, plus others that you can read about in my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life, has restored my independence.  Going grocery shopping no longer makes me anxious, because I can finally do it without needing a day or two to recuperate.  I can drive and clean my house again.

Now I am not saying that everyone who reads my book and follows my pain management plan will have the same results.  The changes you need to make may differ, but no matter what, any change that involves listening to and respecting your body/disease is going to improve your life.

Don’t make the mistake I did by waiting 12 years before even accepting that there was no way I could go on living like I used to.

Living our old lives doesn’t make us strong, instead it makes us weaker.

Living our old lives does more than increase our physical pain, it hurts us and our loved ones emotionally too.

Are you still living your old life? 

Whether you are or not, I challenge you to examine your day to day life and pick one area/task that could be done differently, in a way that won’t increase your pain level.  Then make that change.  You don’t have to change every aspect of your life immediately, take your time and make your changes one step at a time.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fibro Farts

 

 

 

 

 

 

 

Fibro Farts

You may have heard of fibro fog, but what about fibro farts?

That’s right friends! We have yet another “F” word to contend with!

So what’s the deal?

Many people who have fibromyalgia also suffer from excessive bloating and gas.  Mine is also caused by adhesions that have wrapped themselves around my digestive system. There are many reasons inside and outside of the digestive tract that can cause it to become inflamed or obstructed.

The body living with fibromyalgia is always inflamed, which makes it work overtime.  So sporting a Buddha-belly shouldn’t really be such a surprise.

*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.

How to avoid them

  • Drink water
  • Watch what you eat and avoid foods that are known to cause inflammation such as sugar, wheat, and artificial sweeteners.
  • Exercise

 

 

 

 

 

 

 

 

 

 

Let it blow!

Let’s get real, there are going to be times when we stray from our diets or just want to indulge a little….  Also, as every fibro warrior out there knows, this wretched disease doesn’t need a reason to make us miserable, it does a great job on its own.  So no matter how careful you are, you may still end up with a case of the fibro farts.  Here are a few ways to let them blow in style!

  • Embrace an expandable wardrobe: Choose clothing that look and feel good whether your belly is flat or bloated.
  • Let them blow!  Don’t hold them in! Worried about someone hearing or smelling them? Step into a large group or find a quiet corner and let loose.
  • Invest in panties or disposable fart filters
  • Don’t worry, everyone passes gas, you won’t be the first or the last to let one rip!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Protected: Online Medical Marijuana Recommendations: Convenient or a Waste of Time?

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I Don’t Believe in That Disease

 

 

 

 

 

 

 

 

 

I used to think having to be retested for a disease whenever a new physician didn’t believe that I had it was frustrating.  I can’t tell you how many times I was told by a new doctor that they didn’t believe my diagnosis of psoriatic arthritis from another physician.  Each time they wasted my money and time by reordering all the same tests, that wow, surprise, had the same results.  Thankfully, they would accept their own results and move on.

My diagnosis of fibromyalgia has been more problematic. In fact it almost cost me my life……..

Soon after receiving my diagnosis of fibromyalgia, I began having abdominal pain. I began seeing my gynecologist way more than I ever did while pregnant with my daughter.  During one visit I mentioned my diagnosis of fibromyalgia and he said, and I quote “That’s not a real disease.”

Believe it or not, his thinking that fibromyalgia wasn’t a real illness actually helped me for the first two years.  Because he didn’t believe in it, he pushed my insurance provider to approve an exploratory surgery when all tests came back showing nothing wrong.  That surgery revealed that I had endometriosis and an extremely large ovarian cyst.  The cyst and adhesions had pulled my bladder, uterus, and left ovary towards my sidewall.  In addition, they not only pulled my left fallopian tube towards the sidewall, it had adhered and embedded itself into it!

The pain and symptoms returned within a year. Thankfully he still didn’t believe in my chronic illness and agreed to perform a hysterectomy.  That surgery revealed a belly full of adhesions and a bunch of ovarian cysts.  In addition to what was found in the prior surgery, adhesions were also pulling my rectum towards my sidewall.  So far so good, right?! In fact you may be wondering how this led to me almost losing my life. Less than six months later, the pain on my left side returned and……..

*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.

 

 

 

 

 

 

 

 

 

 

 

 

 

I was horrified when the pain returned.  My OBGYN had removed my uterus, ovaries, and fallopian tubes.  I had also had an appendectomy prior to the hysterectomy.  There wasn’t anything left that could be causing the pain that I was experiencing.  I returned to my gynecologist who after hearing about my pain, decided to blame my pain on fibromyalgia! The very disease he adamantly denied existence of became an easy way for him to get rid of a complicated patient.

Over the course of two years I went from one surgeon to another.  Not one would consider that I could still be experiencing problems from endometriosis or that it was possible that something went wrong with my hysterectomy.  One after the other opened my chart, without running any tests or performing any type of examination, and blamed fibromyalgia.

You may be thinking, wait a minute, those doctors believed that you had fibromyalgia!  I will never know whether they really believed that I had it or not, but I do know that they knew very little, if anything, about the disease.  When I would explain that his had never been one of my fibromyalgia symptoms, they would just say that they heard it was a symptom of it.  If they didn’t blame fibromyalgia, they told me that it was all in my head and that they would happily refer me to a psychiatrist.  Then they would close my file and leave the room…….

Two years, twenty surgeons, not one was willing to help me.  Each and everyone blamed an illness they knew little to nothing about and even denied until it became an easy scapegoat.  These men made me doubt my sanity, made everyone except for my husband and children think that I had lost my mind.  Friends and family believed that I was depressed, addicted to opioids (why else would someone go to the emergency room as much as I did), or that I wanted surgery for attention.  Funny thing about the last thing, is that all those who didn’t believe me, never helped out during the prior surgeries.  In the meantime my pain increased, I became weaker, and sicker.

Long story short, surgeon number twenty-one finally believed me and agreed to perform surgery.  What he found shocked me, the attending nurses, and the surgeon himself.  I had adhesions everywhere.  He had to scrape from my cervix up to my diaphragm. He also found that a large portion of my left fallopian tube had been left behind during the hysterectomy.  It was infected, covered in endometriosis, and was embedded into my sidewall.  Not only was it embedded into my sidewall, there was evidence of how it had adhered and embedded to other areas of the sidewall and was pulled out by adhesions.  If that wasn’t enough, my bowels were being strangled by adhesions.  But according to my original surgeon and 20 more, it was either fibromyalgia or in my head……..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My saga doesn’t end here. But the point of this post isn’t to share the entire story, but to demonstrate how if any of those surgeons had believed in or had any knowledge about fibromyalgia, I wouldn’t have had to suffer the way I did.  I have always despised my diagnosis of fibromyalgia and will continue to until doctors choose to learn more about it.  The ignorance of 22 surgeons almost cost me my life. As the surgeon who found the mess informed me, having my bowels strangled like they were would have killed me.

It doesn’t matter if a physician believes in fibromyalgia if they are not educated in it.

Have you ever been told that your disease isn’t real by a doctor?

Have serious unrelated symptoms/illnesses been overlooked because of your diagnosis of fibromyalgia or other disease?

The damage I suffered continues to haunt me and put my life at risk.  Don’t let the ignorance of one or twenty-one doctors put your life in danger. Had I given up, I wouldn’t be here to share my story with you today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Weekend Recap Jan 27- Feb 1, 2019

 

 

 

 

 

 

 

 

Weekly recap for Jan 27 – Feb 1, 2019

Two Simple Ways to Use CBD Isolate

28 Ways to Practice Self-Care

Love Every Move and Stretch You Make

Love Yourself Enough to Schedule a Rest Day

The Disabled Diva’s Review of Earthley Elderberry Elixir

 

*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.

This drug free pain relief device has take my chronic pain management plan to a new level of awesomeness! Click here to see how and click here to learn more about this life changing piece of technology.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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