Managing Emotional Energy

PainAreasMSK

This post is written from an MSK patient’s perspective and is not meant to diagnose or treat any condition. Do not start or stop any treatment without first contacting your healthcare provider.

I don’t know one person who doesn’t suffer from some sort of pain. Even people without chronic illness or disease tend to have aches and pains.

Due to MSK, I have chronic flank pain but I also carry a lot of pain in my pelvis. Which is why I was shocked when I saw the above info-graphic.  I carry pain in my “survival center.”  Anyone who knows my personal life can tell you it has been filled with surviving. I went from a successful, independent career woman to someone who lost their home, their marriage and almost my life on several occasions. I’ve lost everything and everyone I’ve ever held dear, had to move states and suffer from two rare, incurable illnesses.

Due to the circumstances I’ve had to be “taken care of.”

Ironically, my caregiver now has pain in the “burden center.”  This person is in school full-time and works full time in an attempt to get a better life for us. He literally feels the weight on him, considering he is the only one working now and feels like our future is dependent on him.

Minus what modern medicine wants us to believe, we are triune creatures. Which means we are mind, body and spirit. Each one impacts the other. When you are carrying difficult emotions, it is going to affect your body. The same goes for battling health issues or pain, it is going to affect your spirit.

When we are in pain constantly and feel like there is no chance for relief, that can make us feel hopeless.

Our minds impact our bodies. Our bodies impact our minds. Both are impacted by our spirit.

What can we do about it?

It is impossible to be happy 100% of the time. Life has hard moments, especially with chronic illness.

How do you manage keeping your body, mind and spirit in balance?

There is no magic trick to happiness, but there are some basic things you can do to improve your life.

1- Give yourself BASIC HUMAN NEEDS!

Eat, hydrate and sleep properly. Your physical needs need to be met, every single day.  Drink enough water, eat nutritious foods and get enough rest.

2- Surround yourself with POSITIVE INFLUENCES.

You may have to be around some negative people, but that doesn’t mean you have to let them control you life or make you feel bad about yourself. If at all possible, try to limit your time around negative people. Cling to the supporters in your life.

3- Do something you enjoy, every single day.

It can be something small like taking a hot bath or listening to your favorite music but doing something you enjoy can make life worth living.  It becomes extremely difficult when the bad in your life outweighs the good. Doing something for yourself every single day will help you “detox” from the negativity. You have to fight through the bad moments to get to the beautiful ones.

4- Be your own friend.

Negative thoughts and self talk can lead to depression and suicidal thoughts.  If you wouldn’t say it to your best friend, why would you say it to yourself?

Negative self talk about your health, limitations and shortcomings with inhibit your spirit and is harmful.  Be kind to yourself.

5- Live as much as you can.

Sure, with a chronic illness it can be difficult and sometimes impossible to live the life we want to. But know that NO ONE lives a perfect life. What you see on facebook is not always the truth. Everyone has struggles, everyone has things they wish they could change!

The happiest people are the ones who accept the good and the bad in their lives and do the best they can with what they have.

Live YOUR life. Don’t try to measure up to anyone else. 

Laugh with the people you love.

Smile.

Be a light in a dark world.

Switch your focus to what you have not what you want.

Enjoy every joyous moment you experience….

Even simple things like:

A warm hug from a loved one

A nice family dinner

The sight of your kids falling asleep

The taste of your favorite foods

The sound of the wind blowing through the trees on a warm spring day

The feel of riding around in the car singing along to the radio

 

Life has little moments that remind us it’s worth living, don’t take those for granted.

 

 What you are taking for granted, someone is out there begging God for.

 

The very breath in your lungs, someone is praying for.

So, let go!  Be thankful.  Live the best life possible. Be kind to yourself!

It can be difficult, It can feel impossible……

But, you have the choice to either be happy with your life or be miserable wishing for someone else’s.

The choice is yours.

 

 

 

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Spongie Story- Brittany Jo

 

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May 23, 2013 is the day that will forever change Brittany Jo’s life. At the age of 26, she went to a walk in clinic and found out that she was pregnant with her third child. But that day was also diagnosed with Cacchi-Ricci disease (MSK).
When she was eight months into her pregnancy, she had severe back pain and went back to the clinic. They found multiple stones, the biggest measuring around  7mm. Six weeks after her daughter was born, she had her first stone procedure. She had  ESWL (liptotripsy) which sadly didn’t result in the passing of all stones and required a ureterscopy two weeks later.
Medullary Sponge Kidney has impacted her life greatly. Since her diagnosis. her life has been a blur of hospital visits, surgeries, lab tests and doctor consults.  She has had nine stone procedures since her diagnosis five years ago. She has also had two parathyroid operations which have now left her hypocalcemic.
Despite her challenges, Brittany Jo is still a great mother and always tries her best.

Moral of this story-

Life is a mixture of good and bad. Brittany Jo’s MSK diagnosis was tragic but her pregnancy was a blessing.  In life, the trick to staying sane is to hold onto the good things as much as you can. Bad things will happen, but you can’t let them destroy the good in your life.  Keep moving forward, no matter what!

Interested in sharing your story?
Contact us!

How to be diagnosed with Medullary Sponge Kidney (Cacchi-Ricci Disease)

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Medullary Sponge Kidney is a rare congenital disorder which can cause recurrent kidney stones, infections, chronic pain and renal impairment.

The standard diagnostic test most urologists use is called an intravenous pyelogram (IVP) .

An IVP is an x-ray examination of the kidneys, ureters and urinary bladder that uses iodinated contrast material injected into veins. An x-ray (radiograph) is a noninvasive test that helps physicians diagnose and treat medical conditions.

(Source- https://www.radiologyinfo.org/en/info.cfm?pg=ivp)

If severe enough, MSK can also be viewed on ultrasound and MRI scans.

Doctors have been misinformed that MSK is a benign disease, this is unfortunately not the case. People with Cacchi-Ricci disease typically suffer from frequent infections, recurrent kidney stones, renal and bladder spasms, fatigue and chronic pain.

Though not present in all cases, a marker of the disease is frequent stone formation, sometimes in the form of “kidney gravel” which are tiny stones that form as the kidney struggles to properly filter due to the congenital malformations.

If you are struggling with chronic renal pain, please ask your doctor for an IVP test.

 

MSK Suicide Awareness Month

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The Coping with Cacchi-Ricci Coalition is running a SUICIDE AWARENESS CAMPAIGN for the month of April.

 

Most people do not understand that chronic illness and pain impacts so much more than just physical symptoms.

Chronic illness is a total assault on the mind, body and spirit.

This month, the coalition will be posting resources, tips and support for mental health while battling an incurable disease.

MSK is a tough disease, but we are tougher. 

We welcome you to join us this month as we tackle this tough issue via this website, our facebook page, twitter and instagram accounts. (Links on home page)

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Introducing Coping with Cacch-Ricci Coalition

The current political and medical atmosphere is in disarray, leaving patients confused, sick, in pain and worst of all- untreated. 

Sufferers of Medullary Sponge Kidney or Cacchi-Ricci disease are at the forefront of this fight. So many of us are fighting for better treatment, less pain and quality of life.

It is high time patients rose up for our rights.

We have the right to medications. 

We have rights to doctors.

We have rights to surgical and medical interventions. 

The current state of healthcare is unacceptable. 

We are proud to introduce the Coping with Cacchi-Ricci Coalition.

CoSeal This Coalition was established to be a collective voice for all those suffering with Medullary Sponge Kidney (Cacchi- Ricci Disease)

We have joined the  Chronic Illness Advocacy & Awareness Group, INC  in an effort to make real changes happen in both the political and medical spectrums. 

CIAAG Official Statement-

It’s time for the public, lawmakers and other groups to differentiate between the issue of opioid addiction/misuse and the responsible and necessary use of opioids.

We seek to represent the voices of those who are suffering.

Everyone deserves the chance to have quality of life, even those with incurable diseases and chronic pain.

We are standing up in the fight against the injustices to the chronically ill!

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Winslow, Shannon and Ashley are the founders of the Coping with Cacchi-Ricci Coalition. To read more about the co-owners click the link below-

Coalition Team

If you would like to join us in our fight, Or if you feel you are being inappropriately treated and could use our help, please fill out the contact form.

We are also accepting members to align with us in our mission-

Better treatment, for ALL! 

MSK Awareness Fact #15

know17Medullary Sponge Kidney (Cacchi-Ricci Disease) is a congenital disorder, which means it is present from birth. The malformations occur when the kidney’s tubules fail to develop properly.

MSK is sometimes misdiagnosed as poly-cystic kidney syndrome, when in reality it is Cacchi-Ricci Disease.

MSK kidneys have a sponge-like appearance and typically have cysts as well.

MSK Tip #14

tip6If you frequently pass stones, that can irritate your urinary tract and bladder.

Frequent stones can cause inflammation, infection and can lead to a condition called interstitial cystitis.

I.C can make you feel like you have a UTI, even without the presence of infection.

If you suffer from this pain, ask your doctor about bladder installations.

Bladder installations are a treatment for inflammation in the bladder.

Your doctor will mix a cocktail of medications together (usually a combination of gentamicin  DMSO        and  heparin) and place them into your bladder via a catheter insertion.  They will fill your bladder with the medicine and you will have to hold the liquid for 1-2 hours.

Some MSK patients have greatly benefited from this treatment and it has helped them manage their pain.

Ask your doctor if bladder installations could help you!