Why technology is important for spoonies

Read about Netflix shows featuring chronic illness on The Unchargeables.

We’ve all been scolded for being on our phones, laptops and tablets. In this current age of rampant technology, it is understandable that these convenient devices can inhibit human interaction. While this is a growing issue, there is another side to this conversation that no one seems to be discussing.

What if technology was your only source of social interaction?

What if a disability, disease or mental health challenge inhibited your ability to have regular social interactions.

To these folks, a computer, tablet or cell phone may be the single source of not only entertainment, but also friendship and connection to other human beings.

Isolation is one of the most difficult parts of having any disability or illness. Not being able to socialize like we once did is a difficult card to be dealt, along with life long, incurable illness.

Most of us, before our diagnosis led very social, exciting lives. Most of us have had to mourn not only the life we once knew, but the friends that isolation took with it.

This is why it is SO important to keep in touch with your disabled friends and family and never judge them for the amount of time they spend on technology.

You never know how one text message or phone call can make a difference in someones life, for the good or bad.

For example. as a former career oriented women with a robust social life, since my diagnosis of Adrenal Insufficiency caused by my congenital disorder, Medullary Sponge Kidney I have had to reclaim a new life. I am no longer able to work a full time job and am mostly homebound. Due to health, I was forced to move away from my home state and am isolated in a foreign place for access to rare medical treatment. Texts, phone calls and social media are the main way I communicate with my friends and loved ones now. My extroverted soul aches in the isolated four walls I live in now.

I recently texted one of my loved ones, repeatedly, with no response.

I know it shouldn’t, but since that is my only source of communication with people, it hurts my feelings sometimes when people seem to be too busy for a three second reply.

This person’s response to my repeated text was “Sorry, I try not to be on my phone much.”
And I thought. “What a luxury.”

I miss the days where I didn’t have time to look at my phone because I was so busy running the geriatric home I was the director for. I was so busy perusing my degree in medicine I didn’t have time to scroll through social media. I was out in the world. I was an extrovert who was allowed to be extroverted.

Now, texts, calls, FB messages etc are my sources of social interaction, other than my weekly treatments at the hospital.

Social media and phones can be a source of JOY or a source of STRESS. It’s all in HOW you use it. It’s all in what you expose yourself to. It’s all in the people and content you ALLOW in your life.

If you are homebound and isolated, please don’t feel alone. There are many communities and support groups that understand the struggles you may be facing.

You are never alone, even if your only friends are in your phone 😉

Another point to be made is how important streaming services and TV can be in the life of someone chronically ill.

I know we all have felt guilt at some point for how much binge watching we’ve done, but honestly this practice has it’s place!

There are days where I am in so much pain and feel so miserable from my disease that I have to have a distraction. My mental health depends on it. Sometimes, watching a comedian on netflix or a comforting classic movie is a much needed distraction for those of us who struggle with difficult diseases or disabilities.

There’s only so many deep breathing exercises, meditation and yoga you can do and sometimes you just need to rest and recuperate.

I know sometimes we feel guilty for the amount of resting we do, but when you battle a disease 24/7 365 with no remission, it is completely okay to need a distraction in your life.

If netflix, youtube, hulu or whatever is that distraction for you, by all means please do not feel guilt over that. You deserve to rest. You deserve to be able to enjoy movies, shows and entertainment just like the healthy people.

I will close with two messages:

1- Don’t let anyone berate you about being on technology if you are using it for POSITIVE reasons.

That being said, if technology and social media is becoming a source of stress, it’s ok to cut back on it. Just don’t isolate yourself completely. You deserve to be heard, understood and loved.

2- If you love someone who is homebound, sick or disabled, respond to their texts, messages and phone calls when you can.

I get it, you’re busy. But we should never be too busy to let someone know we care Sending a text takes 3 seconds, but it could make someones whole day! Make people you love a PRIORITY. Especially those with chronic health issues, they may value your efforts even more. <3

Wishing you hope, healing and happiness!

Love, Win

To read more from Winslow you can visit her website-

https://winslowedixon.wordpress.com/

December 25, 2019December 25, 2019

The Cortisol Pump- Life Improving Treatment for Adrenal Insufficiency

Endocrine diseases are common, however most people have never heard of adrenal insufficiency or even know what cortisol is.

Adrenal Insufficiency and Diabetes are both endocrine diseases. However one has a great deal of awareness, whereas the other does not. So, we will use them both to explain the cortisol pumping method.

Adrenal Insufficiency and Type 1 Diabetes are both difficult diseases to manage. Both are serious, endocrine, auto immune disorders and we are in no way downplaying the battle of diabetic patients, we are simply using it as a comparative tool to explain adrenal disease, as most people are unaware of it.

Adrenal insufficiency is a disease where the adrenal glands fail to produce the proper amounts of steroid hormones. There are many different forms of adrenal disease, but the treatment for all forms is the same- steroids for cortisol replacement.

Type 1 Diabetes is the disease where the pancreas fails to produce the correct amount of insulin, thus rendering someone insulin dependent. Both of these diseases are endocrine disorders. Both of these diseases require life-long replacement therapy. The adrenal insufficient person is dependent on cortisol. The diabetic is dependent on insulin. Both of these diseases are life threatening. Both of these diseases require daily monitoring.

Almost every cell in the body has cortisol receptors, making it a crucial hormone. This hormone impacts multiple functions of the body. Without adequate levels of cortisol, the body will go into an adrenal crisis which will result in organ failure and eventually death. Cortisol impacts blood sugar levels, metabolism, stress response, inflammation levels, aids in the immune system, affects the metabolic processes such as the salt and water balances within the body and it also greatly impacts the circadian rhythm.

Unlike diabetic patients, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own personal signs and symptoms of low cortisol. and require an emergency injection if their levels drop too low. The standard treatment for all adrenal disease patients is daily cortisol replacement medication- steroids.

Medications such as prednisone, dexamethasone or hydrocortisone are prescribed to replace the deficits of steroid hormones in the body. Steroids have a myriad of side effects ranging from weight gain to emotional disturbances. Long term steroid use has been linked to damage of the bones, eyesight and even muscle tissue. Yet, steroid cortisol replacement is the only treatment for adrenal disease.

In a normal person, during situations of emotional or physical stress their body releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol. In an adrenal insufficient person, this does not happen. They have to artificially manage their cortisol. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.

The most commonly prescribed steroid for adrenal insufficiency is hydrocortisone (HC). This is the bio-identical steroid medication. This medication has a blood serum half life of 90 minutes and must be taken multiple times a day. Most adrenal patients struggle with quality of life due to this mismanagement. Oral HC must be processed through the stomach and the liver before reaching the blood stream. This causes a constant rise and fall of cortisol levels, which results in subpar function, increases mortality rates and decreases quality of life.

Quality of life in adrenal disease patients is vastly poor due to this lack of balance. Oral cortisol replacement cannot do what natural cortisol can. But fortunately, endocrinology research has found a solution for adrenal patients who have failed to stabilize on oral cortisol replacement medications.

The concept of Cortisol Pumping is the use of solu-cortef (inject-able version of cortisol when mixed with saline) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump. This therapy bypasses the gastric passage and is able to deliver cortisol in a more natural way. With this method, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the instability experienced with oral steroid cortisol replacement. Side effects due to mal-absorption are decreased and patients have been reported to have improved sleep, weight management and experience an overall improvement in their energy levels and sense of well-being. This method has also been proven to lessen the prevalence of adrenal crises and lessen hospitalizations due to low cortisol.

Peter Hindmarsh, Professor of Paediatric Endocrinology at University College London and Consultant in Paediatric Endocrinology and Diabetes at University College London Hospitals and Great Ormond Street Hospital for Children is the pioneer for this treatment. He is currently Divisional Clinical Director for Paediatrics at University College London Hospitals is the standard for the cortisol infusion method. He has done much international research and has proven that this method improves the lives of adrenal insufficient patients.

Though this method is not a cure for adrenal disease, it is an option and a ray of hope for those who are struggling with quality of life.

Access to the cortisol pump treatment is limited and the Adrenal Alternatives Foundation is dedicated to helping people establish care and maintain pumps/supplies to achieve this life changing treatment.

Adrenal Alternatives Foundation was created to help all adrenal disease patients find better quality of life. They are actively working to make sure ALL treatment options, including the cortisol pump are available to all adrenal insufficiency sufferers.

This is just one step into bettering the lives of future adrenal disease patients.

If you are struggling to manage adrenal insufficiency, don’t lose hope. There is help out there and Adrenal Alternatives Foundation is dedicated to education, advocacy and encouragement for all adrenal disease.

For more information please visit their website- https://adrenalalternatives.com/

June 14, 2019June 14, 2019

A letter from your disabled ex

Chronic Illness tests even the strongest relationships; causing some to fail. This letter is to all those who have been through breakups. May you find your source of light.

Dear Ex,

Hi, its me, your chronically ill ex. I’m writing this letter to tell you all the things I never got to say.

First, I want to thank you for being with me through the rough moments my health caused. With you by my side, the hospital stays, surgeries and emergency room visits were a little less terrifying. I want to thank you for holding me on the days where I couldn’t get out of bed. Thank you for making me smile whenever all I wanted to do was cry.

I often wondered if I was cursed with all that’s wrong with me, but you were the constant reminder that there were still good things in life.

I realize it isn’t easy loving someone who needed so much help, but you never made me feel like any less of a person. You always made me feel as if I still mattered. My illness was something we both battled. You were my partner, my ally, my best friend.

As my body changed, you never made me feel any less beautiful. You promised me the disease could never make me any less beautiful, because the beauty you saw came from my soul.You never complained about staying home with me instead of traveling the world and visiting theme parks like our friends did. Our paradise was our time together. I didn’t have to travel to exotic places, because my whole world was beside me.

Even though we are not together now, I want to thank you for being a light in the darkness.
I always attributed your presence to what saved me from utter darkness and despair.

I saw you as the source of light in my life.

And then I realized something!
When there is much deep, pitch- black, darkness any speck of light seems brighter.
My illness was so devastating it created so much darkness in my life, of course you seemed to be the brightest light in the universe.

But you didn’t save me. You didn’t shield me from the darkness.
I did. I saved me.
I kept my own internal light burning.
I held onto the light within my soul,

When you left, I felt like the only light in my life had gone out. But I quickly saw that I had always been holding onto my own light all along. My spirit inside me was what kept me alive all these years, not you.
As much as it hurts to see you truly abandon me, it made me realize that I never really needed you at all.
The light I thought you were came from me the whole time.

So, I wish you well, former love. Thank you for helping me realize the power within myself.

Sincerely,
Your Chronically Ill Ex

To read more from Winslow, visit her website

November 22, 2018June 21, 2019

10 Weight Loss Tips For The Chronically Ill

Obesity and weight loss can be major challenges for those of us who struggle with chronic illness. Unlike healthy people, we can’t just hit the gym harder and work off the excess pounds. So what can we do?

Below is a list of tips to consider if you are trying to manage your weight.

1- Visit your doctor.

Weight gain can sometimes be caused by an underlying medical issue. There are thousands of things that can be impacting your weight. Thyroid issues, hormonal imbalances, insulin resistance and certain nutritional deficiencies can all cause you to pack on the pounds, despite diet and exercise. If you are struggling to lose weight, talk to your healthcare provider, request lab testing and rule out any medical condition concerns.

2- Eat right.

Eating right is different for everyone. You have to decide what is best for your body, your health and your lifestyle. Two people can be on the same diet and have completely different results. Certain health conditions can inhibit your tolerance to specific diets. For example, those who have chronic kidney disease are discouraged from diets such as Adkins or the Keto diet due to the high amount of animal protein consumed. People with endocrine conditions such as diabetes or hypoglycemia are discouraged from intermittent fasting due to unstable blood glucose levels. People with mental health issues, depression and anxiety sometimes struggle with low carb diets due to the lack of serotonin. You have to figure out the diet you feel best on. The goal is to eat as naturally as possible. Avoid refined sugars, saturated fats and artificial ingredients such as aspartame, MSG, preservatives and artificial coloring.

3- Stay Active.

Obviously, not everyone is a marathon runner or power lifting champion. Those with chronic health conditions may not be able to perform extensive exercise, however it is still important to stay as active as possible. Simple exercises such as walking or swimming are low impact and beneficial to the body. Don’t think you have to torture yourself to stay active. The old saying is true, If you don’t move it- you lose it. Little things like walking up and down stairs, climbing in and out of a bathtub or bending down to pick something up are ways we move our bodies without even realizing it. If you are struggling with exercise, start with 15 minutes of low impact stretching a day. Conditioning your body is a slow process. The point is just to keep moving and stay as active as possible!

4- Hydrate.

How many of our calories do we consume unnecessarily through sugary drinks? Do not drink your calories. Sugary coffees, sodas, milkshakes and slushies are wasted calories. Our bodies are not meant to process high amounts of sugar all at once. Consistently drinking these beverages can cause insulin issues and lead to Type Two Diabetes. Water is what your body is made of. We need to stay hydrated to stay as healthy as possible. Drink adequate water and avoid the sugary drinks!

5- Assess your medications.

Talk with your healthcare provider about the medications you are taking. Certain medications cause weight gain. Steroids and anti-depressants are notorious for causing weight gain. No one wants to be on medication and sometimes they are absolutely necessary. But check with your doctor to see if there may be alternatives to your prescriptions that could be causing weight gain. If not, don’t fret. What’s the point of looking good if you don’t feel good? Take the medications you need for the best quality of life possible. Don’t beat yourself up if they have caused you to gain weight. The point of life is to live to the fullest every day, and if medications help you do that, the extra pounds are a small price to pay.

6- Sleep.

Adequate rest and sleep are essential to being healthy. When your body is run down, exhausted and tired it cannot function at 100%! Your body will be stressed out and that can cause increased cortisol levels and lead to weight gain. Rest when you are tired. Sleep the recommended amount of at least 8 hours a night.

7- Manage Stress.

If you are constantly burning the candle at both ends, your body is going to react to that. If your body goes into survival mode, it is going to slow your metabolism, store fat and not work properly. High stress is one of the worst things you can do to your body. Weight loss won’t happen until you get your stress levels under control. Practicing healthy habits like meditation, having a positive mindset, avoiding negative people and performing relaxation techniques are great ways to manage stress.

8- Prepare.

Preparation is the key to success. Planning your meals, grocery shopping and meal prep are essential to successful weight loss. You cannot lose weight if you are constantly eating fast food and consuming poor-quality nutrition. Meal plans can be found for free online and there are thousands of diet books and resources available. Your health is an investment and you must take the time to invest in it. Plan your meals, learn to cook at home and avoid fast food.

9- Get a Support System.

Losing weight is a difficult process. It helps to have people that will support you along your weight loss journey and keep you accountable. Join a support group, go on a healthy diet with your spouse or best friend, exercise in a class at the local gym or YMCA. Find people who will help you reach your goals. Avoid negative people who don’t support you. This is your life, your health and your goals. Align yourself with people who will lift you up and not tear you down.

10- Love yourself.

Ultimately, you are not defined by your looks or your weight. The goal of weight loss should be to feel better not look better. Weight loss is about being as healthy as possible. If you are miserable on a certain diet, don’t torture yourself. Some people go into severe depression on low carb diets while others have success. You have to know what is best for your body and love yourself for who you are. Your weight doesn’t define you, your heart does. All you can do is your best and that is enough.

Best of luck with your weight loss journey.

Love, Win

To read more from Winslow, feel free to visit her website

July 9, 2018

Conquering Cluster Headaches

According to the American Migraine Foundation, cluster headaches are said to be, “the most painful of all headaches. They have been described as “suicide headaches.”

What sets these “headaches” apart from a typical migraine is the specific attack on the trigeminal nerve (which is cranial nerve five). This nerve controls sensations of the face. Due to this, the pain associated with cluster headache often localizes to the face particularly around and behind the eye. The inflammation or irritation of this nerve also causes an autonomic response in the form of symptoms like red, swollen and/or teary eyes, runny or stuffy nose, sweating or flushing of the face, drooping of the eyelid, or a sense of fullness in the ear.

I have had migraines all my life, but I didn’t start getting cluster headaches until my mid-twenties. I was amazed when I read that they were called, “Suicide Headaches.” This is a completely accurate description. I am not generally a depressed person. I do not suffer from any mental illness or anxiety but when I get cluster headaches; that is the only time I am ever suicidal.

The pain and other symptoms are so intense, my brain’s only thought is ending the agony. I have a theory that cranial nerve five is somehow associated with mood stabilizing cognitive function and therefore when is irritated, throws off emotional homeostasis. I am not a neurologist so that is just my theory. But, what I can tell you for certain is that cluster headaches are one of the worst experiences that a person can face. With my kidney disease (medullary sponge kidney) I have constant kidney stones. These stones are unbearably painful at times, but I’d still rather have a kidney stone than a cluster headache.

My cluster headaches require a completely different strategy to battle than my normal migraines. Below is a list of things I have found to help me endure the agony until the cluster headache passes.

– Utilizing both hot and cold temperatures. I know I look insane when I am treating my cluster headaches. I typically have something cool over my eyes and I lay the back of my head on a heating pad. I alternate this to try to calm the irritated cranial nerve and soothe the swelling accompanied with clusters. (Note: DO NOT fall asleep on a heating pad. When using it on your head, keep it on the lowest heat setting and alert someone that you are lying down on a heating pad in case you fall asleep).

– My local dollar store sells small, portable ice packs. I have an entire shelf in my freezer dedicated to these little life-savers. If you battle cluster headaches, I highly recommend getting a good heating pad and some ice packs.

– I have found that taking allergy medicine helps. If I take it in addition to my prescribed medication, it can alleviate the other symptoms associated with an irritated cranial nerve (Note: Do not start or stop any medication without first contacting your healthcare provider).

– Using a nasal rinse such as saline spray helps, too. It aids with the pressure and stuffiness and using peroxide in the affected ear helps relieve some of the pressure. (I pour a small amount in my ear and let it soak for a minute and then wipe it out with a tissue)

– Taking a hot bath while putting ice packs on my neck and a cool clothe over my eyes helps dissipate the intense throbbing. My trick is I pour some water over a washcloth and put it in the freezer for five minutes (long enough to get it cool, but not to freeze it) then I get into the hot bath and turn the overhead lights off and use a tiny nightlight instead.

– A healing resting area is an essential to battling cluster headaches. Using something such as a box fan to create white noise and covering your windows with a black out curtains (or you could even use an extra blanket) and having a cool temperature will help you be able to rest and get rid of the cluster headache.

– When I get cluster headaches, it is typically because my metabolic state is off in some way. Drinks like pedialyte or electrolyte stabilizers such as sodium chloride tablets can help your body fight the cluster headache. (Do not start or stop any treatment without first contacting your healthcare provider)

– Maintaining a regular schedule. Lack of ANYTHING triggers these horrible headaches. If I don’t get enough sleep or hydration, if I get too hungry- BAM there’s a cluster headache. Be sure you are practicing adequate self-care.

– If you do ever get suicidal with your cluster headaches, please reach out to someone.Also, it helps me to leave little notes for myself when I get these. These notes remind me of little good things I want experience again. They remind me that cluster headaches are temporary and I have to fight for my better days. I recommend everyone have a few post it notes displayed around your home written with things that will help you battle the hard moments.

– Don’t be afraid to say NO. If you have a cluster headache, DO NOT force yourself to push through something you don’t want to. You are allowed to say NO. Cluster headaches are one of the most painful things a human can face, and if someone else can’t understand that then why are you pushing yourself to please them anyhow?

If you battle cluster headaches, let me just say that I am so sorry. Know that your pain is validated and understood. Remember to fight through the bad days because the good ones are more than worth it!

To read more from Winslow please visit her website. www.winslowedixon.wordpress.com.

May 12, 2018December 26, 2019

Understanding Medullary Sponge Kidney (Cacchi-Ricci Disease)

Definition-

Cacchi-Ricci Disease is primarily known as Medullary Sponge Kidney (MSK). It is a congenital disorder of the kidneys. Though it is present from birth, symptoms typically do not occur until adolescence. MSK occurs when the tubules in the kidneys do not properly form in the womb. This results in cystic dilatations of the collecting tubules in one or both kidneys. On imaging scans, this shows up as a “sponge like” appearance. 70% of cases are bilateral, which means MSK occurs in both kidneys.

Patients with MSK are at increased risk for kidney stones and urinary tract infection. They typically pass twice as many stones per year as do other stone formers. Over 55% of MSK patients report chronic kidney pain, renal colic, frequent stones and recurrent infections.

MSK was previously believed not to be hereditary but there is more evidence coming forth that may indicate otherwise. There is conflicting evidence as to whether this condition is of genetic origin.

This kidney disease is unique because patients are, for the most part told they are not candidates for transplant. Though MSK can cause sub-par kidney function, only 10% of patients suffer renal failure and require dialysis. This disease, however is listed as one of the top painful conditions according to the American Chronic Pain Association. Sufferers of this disease complain of symptoms such as: Constant flank pain, renal and bladder spasms, pain associated with stone passage, and frequent urination.

Though not present in all cases, a common marker for this disease is the formation of “Kidney Gravel.” These are small, sand-like stones that some MSK patients pass every single day of their lives. These grains cause frequent irritation in the urinary tract; which in turn causes pain, inflammation and leads to infection. This “sand paper” effect can also cause issues such as bloody urine, constant pain and interstitial cystitis in the bladder.

Diagnosis-

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.

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

Additional Testing-

Blood tests for calcium, phosphorus, uric acid, electrolyte levels, blood urea nitrogen (BUN) and creatinine levels to assess kidney function.

Urinalysis to check for crystals, bacteria, blood, and white cells.

24 Hour Litho-Link Urine Test.

There are also imaging tests that can determine if you have lodged or embedded stones.

Additional testing may include: Abdominal X-rays, intravenous pyelogram (IVP), renal ultrasound, MRI or CT scan.

Treatment

Being a rare disease, the treatment for MSK can vary. Diagnostic tests such as urine PH and stone analysis can help sufferers discover what type of stones their body makes and why. Over 50% of MSK patients create calcium stones. Getting a urine PH test is essential to care with MSK because certain stones form in alkaline urine while others form in acidic urine.

Dietary interventions are also essential in the management of MSK. Everyone is different and keeping a Health Log Journal will help you discover what helps or hurts your symptoms.

Some patients have found great benefit from avoiding chemicals such as citric acid. Patients with stones that form in alkaline urine have found relief from acidifying their urine to decrease stone formation. Patients who created stones in an acidic urine have found benefit from eliminating acidic foods such as tomato sauce to manage their MSK.

Drinking adequate amounts of water is also key to managing MSK. This is more than hydration, some patients struggle to drink water with additives such as sodium bicarbonate. Be vigilant of what goes into your body. Your kidneys have to filter everything, be sure you are giving them the easiest job possible when they are already struggling to function.

Pain management is typically a necessary intervention in the treatment of MSK. Kidney stones are severely painful and most patients need some sort of pain relief. Medications such as anti-spasmodics, urinary analgesics and narcotics can be prescribed to manage the agony of MSK. Pelvic floor therapy is also recommended.

With MSK, the tubules in the kidney are not fully formed so they struggle to complete the tasks the body needs. No two people are the same and you should discuss all options with your urologist. Most patients require a combination of dietary changes, medications and physical therapy to manage MSK.

If you are suffering with Medullary Sponge Kidney (Cacchi-Ricci Disease) please know you are not alone.

For more information and resources, consider reading the book Chronically Stoned: Guide to winning the battle against kidney stones & urinary tract infections

Sources-

https://www.ncbi.nlm.nih.gov/m/pubmed/29468561/

https://www.kidney.org/atoz/content/medullary-sponge-kidney

February 26, 2018February 25, 2018

Book Review- The Watcher’s Series

With chronic illness, sometimes we don’t have the ability to travel and do things we wish we could. But, the beautiful part about reading is that it can take you to a place far away, without you ever having to leave your front door. Reading allows you to explore any topic, visit any land and feel various emotions from the comfort of your own home.

Here at the UnChargeables, we will be doing a series of book reviews to showcase some literary treasures we’ve discovered.

Sometimes with chronic pain and devastating fatigue, we need a distraction. One of the best ways to do this is to curl up with a good book.

The Watcher’s Series by S.J West is a fantastic book series that takes readers on a supernatural journey with humor and courage.

The story begins when Lilly Nightingale experiences many brushes with death. It seemed like something supernatural was out to get her. Her odd experiences lead her to discover the unique purpose her life holds.

Along the way, she meets the man of her dreams- Brandon Cole. But his presence in her life brings her to a destiny far beyond her imagination.

This book series is a must read. The characters come to life and the world S.J West has created is sure to provide a welcome escape from reality.

I highly recommend you read it. It can be found on amazon kindle for just 99cents!

She also has tons of other books and her work is vibrant and entertaining.

To check out her series click here—-> http://www.sjwest.com/

February 25, 2018

Book Review- Mediwonderland Book Series

Here at the UnChargeables, we will be doing a series of book reviews to showcase some literary treasures we’ve discovered.

This is Wendy, she is the author of the Mediwonderland Book Series. Her writing journey began when her daughter, Katie began having health issues. At 8 years old, Katie endured many invasive procedures such as a bone marrow biopsy and a splenectomy. She saw the fear her daughter had and sought to find a calming way to explain the scary procedures to her. This is where the idea for the “Mediwonderland Series” was born.

Wendy has since published over a hundred titles that explain various health procedures in a way that young minds can understand.

Wendy struggles with her own health, as she has been diagnosed many health issues such as Ehler-Danlos and Adrenal Insufficiency. Though she is 80% bedridden, she continues to write books to help chronically ill children.

Above is an example of one of her lovely books.

This series aims to make medical procedures less frightening for children all around the world. It will address everything from simple medical procedures to illnesses, and also situations such as bullying, abuse and psychological issues such as PTSD. Children see things very differently than adults and the simplest of tests can be very frightening. Wendy Explains.

As an adult with chronic illness, I couldn’t imagine fighting disease as a young child. This series is a true resource to parents and family members of sick children.

Wendy has created a tool for parents to make a scary experience a little easier.

Kudos to you, Wendy. Thank you for sharing your gift with the world.

To read more of this series click here—> https://www.mediwonderland.com/

January 31, 2018June 21, 2019

What to expect with a Hysterectomy

A hysterectomy is the surgical removal of the uterus. It can be a daunting experience, this post was written with the intent to provide you with a patient’s perspective on the pros, cons and realities of a hysterectomy. This post is not intended to replace medical guidance or treat any condition. Please discuss the risks and benefits of hysterectomy with your doctor if you are considering a hysterectomy.

Different types of a hysterectomy-

Subtotal hysterectomy- removal of the upper part of the uterus, leaving the cervix in place.
Total hysterectomy- removal the entire uterus and cervix.
Radical hysterectomy- removal of the entire uterus, tissue on the sides of the uterus, the cervix, and the top part of the vagina. (Typically is only done when cancer is present.)

Reasons to have a hysterectomy-

Uterine Fibriods- Fibroids are benign tumors that grow in the muscles of the uterus.
Endometriosis- Endometrial tissue grows on the outside of the uterus and on nearby organs, causing pain, infertility and endometriomas.
Cancer
Uterine prolapse- Benign condition in which the uterus abnormally moves and shifts into the vagina.
Hyperplasia- The lining of the uterus becomes too thick and causes abnormal bleeding.
Unresolved Pelvic pain
Unresolved Abnormal bleeding

Different Surgical Techniques-

Vaginal hysterectomy- The surgeon makes a cut in the vagina and removes the uterus through this incision.
Laparoscopic hysterectomy- This surgery is done using a tube with a camera and surgical tools inserted through incisions made in the belly. The surgeon performs the hysterectomy with the use of surgical tools by viewing the operation on a video screen.
Laparoscopic-assisted vaginal hysterectomy- The surgeon removes the uterus through an incision in the vagina assisted by laparoscopic surgical tools.
Robot-assisted laparoscopic hysterectomy- The surgeon controls a robotic system of surgical tools to perform the hysterectomy by using laparoscopic incisions.
Abdominal hysterectomy- Hysterectomy done through an open abdominal incision, giving the surgeon broad access to the pelvic organs.

Patient’s Perspective-

Deciding to have a hysterectomy is a daunting decision. You and your doctor need to have an extensive conversation regarding the risks and benefits of whether this life changing surgery is the best choice for you.

Things to consider-

Your quality of life.

Is your pelvic pain inhibiting your life? Is it impacting your ability to work, sleep or function normally?

Is your cycle normal? Are you bleeding heavily or more than once a month?

Is it impacting your intimacy?

Are you missing work or social functions because of your symptoms?

Are your hormones out of balance?

Do you have fibroids, endometriosis or frequent ovarian cysts?

Are you in pain?

Do you frequently rely on pain killers (such as NSAIDS, tylenol or prescription pain medication)?

The answers to these questions are what you need to speak with your doctor about if you are considering a hysterectomy.

Your quality of life is what matters.

A hysterectomy is a tough choice. It renders a woman unable to ever carry a biological child. It is life changing surgery and should not be taken lightly.

That being said, if you are suffering and a hysterectomy can help you….it is all but worth it.

Personal Note-

At 25 years old, I had to make the tough choice to have a hysterectomy due to uterine fibroids, endometriosis and severe pelvic pain. I tried every viable option before making this difficult, heartbreaking choice. I tried every form of birth control, natural hormone, pill, cream, IUD and surgical option- all to no avail.

I have aggressive endometriosis. Since the age of 12, I have suffered with agonizing periods, abnormal bleeding, menstrual migraines and pelvic pain. It only seemed to get worse the older I got.

I had my first gynecological surgery at age 18 after endometriosis was discovered during an appendectomy/cholecystectomy. I had a pelvic D&C surgery done just about every year after that due to the endometriosis, fibroids and pain.

I tried birth control pills.

I tried bio-identical hormone therapies.

I tried alternative therapies.

I tried progesterone cream.

I tried estrogen patches.

I tried two different IUDs. (Skyla and Mirena)

I tried several surgical options.

Nothing seemed to quell my symptoms or stop the aggressive endometriosis.

The Final Straw-

I had to travel back to North Carolina from Florida due to Hurricane Irma. I was stuck in NC for over a month and had my period the entire time. Already fighting Addison’s disease and Medullary Sponge Kidney, the strain on my already taxed body was just too much. The agonizing cramps, non-stop bleeding, menstrual migraines HAD to come to an end. I knew that a pregnancy would be dangerous if I ever attempted it. The odds of me successfully carrying a baby full term were slim to none.

I made an appointment with my GYN and voiced my concerns. He agreed with me that a hysterectomy was my best option.

On November 22, 2017 I had a total hysterectomy. The surgeon informed me that I made the right decision and my uterus could not have been saved. My endometriosis was so aggressive that it had covered my uterus, cervix Fallopian tubes and created an endometrioma on my left ovary- all of which had to be removed.

As a woman who wanted children, I was devastated but knew I made the right choice.

-What to expect-

Emotional Impacts-

As prepared as I thought I was, emotionally this surgery hit me hard. I do not regret my decision, but it is hard knowing that I will never be a mother. Prepare yourself for the loss. It is, indeed, a loss. This surgery takes away your ability to conceive a child, but it doesn’t take away your ability to be a mother, to nurture and to love.

This surgery also takes away horrible cramps, seemingly endless menstrual periods and fears of miscarrying and passing on horrible genetics.

Focus on what you are gaining from this surgery, not what you are losing.

If you are still struggling with emotional balance, seek help. Inform your doctor. There are many options for dealing with post-hysterectomy depression.

Physical Impacts-

I am not going to sugar coat it, this surgery is a painful one. Be sure you have a conversation with your surgeon about post surgery pain relief because you will need it.

Be sure you have pain medication, proper hydration and nutrition during your recovery.

You will need to sleep a lot to recover. There is no shame in this. Pushing through the pain will stall your recovery. Give your body what it needs, be gentle with yourself.

You will struggle to sit on wooden chairs, walk up stairs and bend over to grab things.

Ask for help if you need it. Don’t push yourself.

After my hysterectomy, I struggled to urinate on my own. This can be a complication from anesthesia. You may require urinary catherization post surgery. Be sure to communicate with your healthcare team if you are having trouble urinating to prevent discomfort and infection. Do not strain to pee! This can cause you to rip your incisions! If you are struggling, communicate with your nurse/CNA.

Relationship Impacts-

A hysterectomy doesn’t change who you are as a person, but it does change your physical ability. Some people may not understand what you are going through. Some people may say mean things like “You are selfish for choosing not to have children” or try to place guilt or blame on you.

DO NOT ALLOW THIS!

You had to make this difficult decision, if anything YOU ARE the victim here and NOT at fault.

You are not less of a woman just because you cannot have a baby.

You are not less of a woman because you no longer have menstrual cycles or a uterus.

You are not at fault. You are not to blame.

Your quality of life is what is important.

Those who truly love you will understand.

I hope this article helps you understand the reality of a hysterectomy.

Below is the video of my personal story with my hysterectomy.

Wishing you hope & healing,

-Win

To read more from Winslow click the link below-

https://winslowedixon.wordpress.com/

January 25, 2018November 22, 2018

Rare Disease Spotlight- Janelle’s Battle with Mitochondrial Disease

Mitochondria are the energy makers in our body. We all learned in high school that the mitochondria are the “power houses’ of the cell. But sometimes, genetic mutations occur in these “power houses” and cause chronic disorders that occur when the mitochondria fails to produce enough energy for the body to work appropriately.

Mitochondrial disease can affect the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears or pancreas. Mitochondrial diseases include autism, Parkinson’s disease, Alzheimer’s disease, muscular dystrophy, Lou Gehrig’s disease, diabetes, and cancer. One in 5,000 individuals has a mitochondrial disease. Each year, about 1,000 to 4,000 children in the United States are born with a mitochondrial disease. – (Source Cleveland Clinic)

This Janelle’s story.

She has bravely fought mitochondrial disease for 27 years.

Janelle was born with genetic mitochondrial disease. She spent a great deal of her young life in the hospital. Mitochondrial disease can impact people in various, different ways. Janelle’s form of this disease vastly impacts her muscles and her gastric function. She was unable to eat solid food until the age of three. Since her body does not function properly, she has to rely on a broviac tube and port to give her life sustaining nutrients and medication. She struggles with neuropathy, cyclic vomiting, fatigue and malabsorption issues. Her gastric function is so compromised that she frequently becomes dehydrated and malnourished. The veins in her body literally collapse from the lack of necessary nutrients and hydration. The only solid foods she can eat are potatoes. Janelle’s diet is mainly comprised of chicken broth.

Janelle is sharing her story because she wants people to know that Mitochondrial disease may be invisible but it is very real. We have lost more children from mitochondrial disease than we have to childhood cancer. Rare disease awareness is necessary.

Symptoms of mitochondrial disease-

(Source- Cleveland Clinic)

Poor growth
Muscle weakness, muscle pain, low muscle tone, exercise intolerance
Vision and/or hearing problems
Learning disabilities, delays in development, mental retardation
Autism, autism-like features
Heart, liver or kidney diseases
Gastrointestinal disorders, swallowing difficulties, diarrhea or constipation, unexplained vomiting, cramping, reflux
Diabetes
Increased risk of infection
Neurological problems, seizures, migraines, strokes
Movement disorders
Thyroid problems
Respiratory problems
Lactic acidosis
Dementia

(These are not all inclusive, every person may not have every symptom. Mitochondrial disease has many different types, forms and origins)

Janelle may fight a difficult battle against this disease, but she is still determined to enjoy her life. She finds happiness by spending time with her family and especially enjoys playing with her nieces and nephews. She also enjoys cheerleading and tries to stay as active as her health allows. She has many friends and the children’s book, The Shivering Sunbeam was dedicated her. She is passionate about helping others realize that even though they may be battling a tough disease, they can still be happy.

I am going to stay positive even though it’s been very rough and difficult. I have to fight for my life. I am not going to give up on hope or faith. Janelle says.

If you or someone you know is battling a rare disease, please know you are not alone. The UnChargeables are here to support you. We will never stop advocating for every chronic illness patient, even the rare ones!

Rare disease awareness is necessary because you never know who may be battling an unknown health issue. Rare doesn’t mean impossible.

You are not alone! Keep fighting.

Would you like to share your rare disease story? Contact us!