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.
Adrenal disease can be life-threatening and is rarely tested for. This post was written to explain how to be properly tested for adrenal disease. This is not to be used to diagnose or treat condition. Contact your doctor before starting or stopping any medication or treatment.
There are many forms of adrenal disease-
Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.
Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.
Secondary Adrenal Insuffiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.
Tertiary Adrenal Insuffiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.
Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.
Cushings Disease- A rare condition that is the result of too much cortisol production in the body. One source of Cushings is when the adrenal glands have a tumor; making too much cortisol. Another cause of Cushing’s syndrome is when the body makes too much of the hormone ACTH; which causes the adrenal glands to make cortisol.
Possible Symptoms of Adrenal Insufficiency-
(Note- This disease is sometimes referred to as “Syndrome X” because it presents different in everyone. The following symptoms are possible ailments that may be present in adrenal disease but are not all inclusive.)
Pain in the abdomen or muscles or joints, dehydration, dizziness, fainting, fatigue, lightheadedness, loss of appetite, low blood pressure, low blood sugar, water-electrolyte imbalance, or sweating, nausea or vomiting, craving salty foods, darkening of the skin, excess urination, muscle weakness, reduced sex drive, or weight loss.
If you are craving sea salt or salty foods, PLEASE get tested. That is one of the most prominent signs of adrenal disease.
The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:
ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.
Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.
8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.
(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)
Alternative Test- An insulin tolerance test (ITT) is a medical diagnostic procedure during which insulin is injected into a patient’s vein, after which blood glucose is measured at regular intervals. This procedure is performed to assess pituitary function and adrenal function.
Important Warnings-
Do not get on any steroids before you have had an ACTH stimulation test. You will forever battle for the right diagnosis with an endocrinologist if you do. Steroids can cause adrenal suppression and if you do not get tested BEFORE your steroid use they will always assume you have secondary adrenal insufficiency, even if that was not the reason you developed adrenal failure.
Do yourself a favor and get tested and discover your body’s natural adrenal function.
Steroids are life saving medications for those with adrenal insufficiency, but they do come with side effects. (Such as- Weight gain, stretch marks, cataracts, glaucoma, easy bruising, acne, increased appetite, increased growth of body hair)
They are not medicines that you want to start on a whim.
Steroids CAN cause adrenal suppression. DO NOT get on them unless your doctor is SURE you need them.
(Acute uses of steroids are common for infections and asthma, this is not what I am talking about. Long term or repeated use DOES come with risks. Please be advised and ALWAYS consult your doctor regarding your medication use)
An adrenal crisis will lead to death if left untreated. If you suspect you are having adrenal issues, please request the following-
Tests-
ACTH Stim Test
or
Dexamethasone Suppression Test
Blood Tests-
Aldosterone, DHEA, Cortisol and Renin levels.
To read more about adrenal disease visit the following links-
This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment. I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.
A new year can be the start of a new beginning. It is typically the time where people set new goals to accomplish for the next year. But with a chronic illness, keeping a New Year’s resolution can be extra challenging. Below are some tips to help you reach your goals and accomplish your dreams!
How to keep your New Year’s Resolutions with chronic illness-
1- Be Realistic. Set goals that you know you can accomplish.
Example- If better fitness is your goal, set realistic goals appropriate for your lifestyle, illness and activity level. If you tell yourself “I’m gunna lose 10lbs a week” and then you don’t you, will be discouraged and end up giving up. Be realistic. Instead of saying “I’m gunna lose 10lbs a week” say “I’m gunna eat right, hydrate and exercise as best as I can. Health is the FIRST priority.
3- Pace yourself. Don’t be “all or nothing.”
If you start out all “gung ho” and go “full throttle” you will burn yourself out and end up giving up. Change isn’t easy and it has to be done in sensible increments.
Example- If you are trying a new diet, do your food adjustments slowly. You will throw your body into a quick and painful detox if you all of the sudden drop all sugar, gluten or meat out of your diet. Focus on replacing the bad things with good things. Instead of eating a piece of cake after dinner, have a piece of fruit instead. Instead of drinking sweet tea throughout the day, replace it with water.
Change needs to happen in a way that ensures you will continue the new habits you’ve chosen to add to your life.
3- Make Positive Resolutions. Be sure you are doing what’s best for you.
Do not compromise your health for any New Year’s resolutions.
Example- All of us with chronic illness would like to be on less medicine. If this is your goal, be sure that you are vigilant of your health needs first. Yes, you want to be off the medicine but if it is helping you or even keeping you alive- this resolution is not what is best for you.
When it comes to adding or taking things out of your life, be sure you are weighing the proper Pros and Cons. Don’t put your health at risk for anything. I promise you it’s not worth it.
Your health comes first, before any resolution.
4- Write out Out. Make a visual chart of what you hope to accomplish.
Grab a pen and paper and write out your weekly, monthly and yearly goals that you hope to accomplish.
Write out a “game plan” of how you are going to accomplish your resolutions.
Example- Schedule for the New Year’s Resolution of getting healthier.
Daily Plan- Drink at least 8 glasses of water. Walk for at least fifteen minutes. Eat healthy foods.
It may help you to post your goals around places you will see them (your mirror, your desk at work, your car, etc)
5- Get Support. Align yourself with people who have the same goals.
Example- If you are starting a new diet, find an online support group for people also on that diet to get tips, recipes and information to help you succeed. This will give you encouragement and accountability.
6- Understand that things take time. Don’t be hard on yourself.
Any change is going to take time! Nothing happens overnight!
You won’t be able to get everything perfect all at once. There will be days where you fail but that is okay! All that matters is that you try your best.
All good things take time to develop and bad habits die hard.
You can accomplish your goals! Don’t give up!
The UnChargeables Site is here if you need support!
Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.
Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.
Secondary Adrenal Insuffiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.
Tertiary Adrenal Insuffiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.
Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.
Body Chemicals Affected in Adrenal Insuffiency-
Cortisol– Glucocorticoid hormone: The body’s stress hormone.
Aldosterone– Mineralocorticoid hormone: Regulates electrolyte balances by instructing the kidney to release potassium and retain sodium.
DHEA– Hormone that aids in the production of androgens and estrogens (male and female sex hormones)
(Blood sugar levels and electrolytes can also be impacted)
Diagnosis-
The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:
ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insuffiency. Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.
8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.
(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)
Easy Explanations-
Most people understand what diabetes is. Diabetes is the lack of the appropriate amount of insulin. Diabetics have to be vigilant of their blood sugar levels and manage their disease with insulin shots/pumps. This is very similar to Adrenal Disease. Just the like the diabetic, the AI patient has to have an external source for their deficiency, but instead of insulin- we replace cortisol. Unfortunately, unlike the diabetics, we have no meter to check our cortisol levels. We have to physically watch our symptoms and stress dose or use an emergency injection if we drop too low. Lack of cortisol is DEADLY. An adrenal crisis will occur if an AI patient does not have cortisol replacement.
Adrenal Crisis-
An adrenal crisis presents differently for everyone,
depending on which form of AI the person has.
Some possible symptoms are-
Blood Pressure/Heart Rate Changes, Weakness, Vomiting, Trouble Breathing, Anxiety, Flank/Back Pain,
Mental changes. These are not the only symptoms-
Everyone presents differently. It is important to always
wear a medical alert bracelet and have an emergency injection with you AT ALL TIMES.
Adrenal Crisis WILL result in death if left untreated.
Treatment of AI-
Medications such as Prednisone, Dexamethasone & Hydrocortisone replace the steroid hormone, cortisol in the body.
The medication Florinef (Fludrocortisone) is used to treat the lack of aldosterone in the body. Not everyone with AI needs this medication, it is mainly used in primary addison’s disease patients.
Side Note- Everyone is different! Not all steroids work for everyone!
Find the right one for YOU with your endocrinologist!
Managing adrenal disease is different for everyone,
but the absolute essentials for EVERY AI patient are- Daily Replacement Cortisol Medication Proper rest, hydration, stress management and nutrition. Knowing the signs of low cortisol (there is no meter to check blood levels) Respecting the physical limits of your body Having an Emergency Injection of Cortisol at all times Wearing a medical alert bracelet at all times
Adrenal disease certainly presents with it’s own unique challenges,
but it is not impossible to live a happy life with A.I.
Proper self care, medication and stress
management is imperative to living
the best life possible.
This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.
I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.
3- Focus on a happy memory. You may be stuck at work, but you can always go to a happy place in your mind. Think about a wonderful experience you’ve had in your life.
4- Take a hot bath. Epson salt soaks are amazing for relaxation and can aid in pain relief.
5- Watch a funny movie or TV show. A little distraction can help you relax!
6- Spend time with a loved one. A few hours with your best friend can make the world look a whole lot brighter.
7- Take some time to indulge yourself. Put on your favorite comfy clothes, drink some warm tea, put some make up on- anything to pamper yourself.
8- Read a good book. You can always escape to another world with literature.
9- Snuggle with your partner. Hugs release the chemical oxytocin, which aids in stress regulation and can lower pain levels as well. Don’t have partner? Single? Cuddling with a pet can reduce stress too. Grab that cute little dog or cat of yours and curl up on the couch!
10- Singing or dancing. Even if you have zero talent- these are great ways to reduce anxiety and to boost your mood.
If you are not physically able to dance, singing can lift your spirits! Like the disney princesses- sometimes it’s fun to sing a long with whatever you are doing!
If you are able to dance- EVERYBODY LOVES the MACARENA! 🙂
Anyone who has a chronic illness will tell you that it sucks. Often on the UnChargeables site, the other admins and I post funny memes about the challenges we face. We try to handle our lives with the best attitudes possible. I typically try to “make light” of my limitations.
But the truth is- Chronic Illness isn’t funny. It took the life I wanted away from me. I was supposed to be this powerful, successful medical person…healing and saving the world…..and now at 25 years old I am unable to work or drive.
The independent woman inside me even hates to see those words typed on the screen.
This being said, when chronic illness changes your life does that give us permission to pout?
Sadness is a human emotion. Regret is a natural feeling. Guilt is a constant factor lingering in the minds of the chronically ill.
Is it ever okay to let yourself have a pity party?
Contrary to popular belief, I say yes. (GASP! Yes…I’ll explain why in a moment)
I had one of these pity parties yesterday. I have been battling my usual fun symptoms with my kidney stones and addison’s disease…but somehow developed an active case of the shingles. Yesterday my pain was overwhelming. I was also hungry and just in a bad mood.
I usually try to be one of these “zen warriors.” I try to just swallow the pain and stress and put on a happy face. But I didn’t have the energy or the will to fake a smile.
I let myself cry. I let myself feel all the negative emotions.
I admitted I wasn’t the invincible warrior I try so hard to be.
And then I let it go.
I had a good cry, took a bubble bath and ordered a gluten free pizza.
I gave myself permission to pout.
I think everyone should, once in a while.
Bottling up emotions, grief and pain will only inhibit your health. Feeling emotions is necessary step in healing.
Have the pity party, just don’t attend it every night.
Music is one of the most powerful influences in the world today. It has the power to express every single emotion known to man. Below is a comprehensive list of the Ultimate Chronic Illness playlist, perfect for every mood, emotion and situation you might face.
“Music expresses that which cannot be put into words and that which cannot remain silent” -Victor Hugo
When you need a battle cry -Angels Fall, Breaking Benjamin
When you need to appreciate life- Great day to be alive, Travis Tritt
When you need to accept things- Had Enough of this, Lifehouse
When you feel like you’re not getting ahead in life- Peace of Mind, Boston
When you need a happy, whiny song- Bird with a broken wing, Owl City
When you need to mentally party – Pitbull/Akon, Shut it down
When you need a song about a fresh start- A new day, Celine Dion
When you need to be thankful for another day of life- Good To Be Alive, Jason Gray
When you feel like sailing away- Orinoco Flow, Enya
When you need to feel free- Baba O’Riley, The Who
When you need to feel better (Mind over Matter song)- Feeling Alright, Huey Lewis
When you just need to feel like a rockstar- Back in Black, AC/DC
When you need to feel dark and dominant, Toccota and Fugue in D minor, Bach
When you need to fall apart- Pieces, Rob Thomas
When you need to let go- All in, TobyMac
When everyone is driving you crazy- Circus for a Psycho, Skillet
When you need a melancholy anthem- Far from home, Five Finger Death Punch
When things aren’t they way they are supposed to be- The Walk, Imogen Heap
When you just want to drive away- Fast Car, Tracy Chapman
When you need to stand up for yourself- Get off my back, Bryan Adams
When you need some pep in your step- Matthew Wilder, Break my stride
Hopefully this playlist will get you through some rough moments!! Stay strong spoonies!
Traveling can be a challenge with a chronic illness. Even the most wonderful of destinations can become a difficult obstacle if our symptoms act up. Some of us have opted to leave our wandering days behind and simply watch the travel channel. But the concept of going places is still a necessary part of life. As we all know, there are a lot of places we don’t want to visit. The road to despair is a place none of us need to visit.
The road to despair typically starts in our own minds. Negative thoughts tend to take us on a guilt trip down misery lane.
Sometimes we have to adopt the mental chant “Don’t go there.”
Thoughts of our former lives before our illnesses can overtake us.
“Remember when” can be the most bittersweet sentence we ever utter.
Thoughts of our pre-illness self can bring us joy but can also bring us pain.
There is nothing wrong with remembering good times. But when the thoughts of your past become a ticket to depression, it is time to derail from the memory lane train.
Remember when I was healthy and worked?
DON’T GO THERE!
Remember when I was thin and without all my scars?
DON’T GO THERE!
We have to look to the future.
Though we may face diseases and pain, we are still alive.
Adopting a mantra that keeps you from going into bad memories is essential to keeping your sanity when you battle a chronic illness.
Whenever we feel ourselves longing for the past, we have to remind ourselves to stay in the moment.
Our lives may have changed but they aren’t over.
When you are tempted to take a guilt trip, just remind yourself DON’T GO THERE!
There are a lot of voices that we hear throughout our lives. Voices that will speak words of joy, sadness, humor, encouragement, knowledge, frustration and various other things. We have the choice to decide which voices to listen to.
Recently, I was telling someone in my life about my progress in physical therapy. Since my surgery, I have fought an uphill battle and have struggled to regain motor skills and to walk. I have had some slight success since starting physical therapy. I am able to walk for very short distances now. I hope that within a few months, walking will become a simple task. I poured my heart out to this person. I shared my joy and opened my heart, to which they replied, “You realize this isn’t an accomplishment right? Normal people get up and walk without a second thought. In fact, what’s sad is that you’re so ill now that you even consider being able to walk a few feet an accomplishment. It is not. Walking is normal human function.”
My heart was immediately crushed by their words. All the hours I had spent exercising my weak muscles, fighting back tears, gritting my teeth and pushing through were only to achieve what normal people can do easily. All of the sudden, I felt like I had achieved nothing. I felt small, I felt sick, I felt worthless.
But why? Because I was listening to a voice that spoke negativity.
This person clearly had no understanding of how hard it was for the chronically ill. My little victory meant the world to me. Yes, normal people walk without a second thought but that doesn’t take away from how hard I have strived to live again.
I will absolutely live again. I will walk again. I will get my life back, regardless of what the negative voices may say.
What lesson did I learn from this?
Some people have zero compassion or understanding. They speak words of negativity, hate and anger. These people will say anything to bring another person down.
You do not have to listen to these voices!
Cling to those voices that speak words of life, love and hope. Those are the voices that will cheer you on into your own victory.
No matter what you are facing, don’t let any voices tear you down.
Don’t let the voice in your head become your enemy either.
You are a warrior. You are strong. You can do ANYTHING!
Listen to the good voices and tell the bad ones to SHUT UP!
Recently, I posted a short video on alternative pain relief solutions. I am writing this post in addition to that in hopes that someone will find relief!
Some of this is common sense, some of it you might have already heard of, but hopefully you may find something that helps!
1- Heating Pad- Just turn it on and place it where it hurts. Warm heat is a wonderful natural pain relief solution. (Be sure to rotate sites and make sure the temperature isn’t too hot)
2- Epsom Salt Soaks- Running a hot bath and soaking for 15-30 minutes in warm water with Epsom salt can soothe aches and relax you.
3-Magnesium Oil- Be sure to contact your healthcare practitioner before starting this treatment, especially if you have kidney issues. But this oil is proven to soothe muscle spasms, calm anxiety and help treat insomnia.
4- Ergonomic Pillows- A lot of muscle and joint pain can be alleviated when pressure is released. Ergonomic pillows help align our bodies and promotes healthy circulation.
5- Essential Oils- There are HUNDREDS of essential oil blends that are remedies for various issues. I highly recommend using essential oils. If you need any suggestions, feel free to message me or tune into the Weekday Wellness video on that topic (week 4). I do not sell them, but I am an aromatherapist and LOVE the relief I get from using oils.
6- Vaporizing Chest Rub- Not only is this product good for congestion, but it also can be used as a topical analgesic for aching muscles and pain.
7- Bath soaks infused with Essential oils- If you don’t like the Epson salts, there are many other versions of bath soaks that soothe pain. (Email me if you’d like suggestions)
8- Healing Movements- Stiff muscles can cause increased pain. A light stretch can help ease aches. (Week 2 video will be explaining some healing movements that chronic illness sufferers can easily do)
9- Guided Imagery/ Mind Body Synergy- Sometimes when pain is high, all you can do is distract yourself. Guided imagery is a great way to keep your mind occupied and relaxed.
10- TENS Unit- This has to be prescribed by a healthcare professional, but it is a great non-medicinal pain relief option!
