Happy in a hand-basket

I’m not sure where the saying, “Hell in a hand-basket” originated from. This saying makes me visualize some nicely wrapped red and black basket with a big bow on it. I guess who ever started this saying was trying to throw a positive spin on something as dark as hell itself.  (The comic below makes me laugh)  😀

hell-in-a-handbasket-560x566

I feel like this last year I was handed my own “hell basket.” It was filled with lots of pain, loss and agony. Things like grueling physical therapy to learn to do simple things like hold a spoon, walk and put on pants again…..Kidney and bladder treatments to try to quell the MSK…..We moved AGAIN….and the last final present life handed me in my basket was the loss of the ability to ever carry a child due to the hysterectomy I had no choice but to have….

This past year was ornately wrapped in both physical and emotional pain.

handbasket (2)

But I am hoping, praying and BELIEVING that 2018 will be a year where I receive a happy basket. 😀

It looks like I am starting out on a good foot. Yesterday, after TWO YEARS of trying, I received a script for the cortisol pump. (Which is a diabetic pump that is filled with solu-cortef instead of insulin) This treatment is as close to normal function as an adrenal failure patient can get. It is supposed to help me live again. It is supposed to help me feel better and find quality of life again.

Yes, we conquered the first step!

Now comes the work. Now comes the task of affording the pump, getting insurance coverage and figuring out the proper amount of medicine and delivery rates to help me live again. This is dangerous and completely in my hands. I am very thankful to have found a doctor with enough trust in me to let me do this. But I also know that when you mess with a life sustaining chemical there are risks. I hope that I will have the wisdom and research to properly do this pump. I want to learn so I can get well enough to return to school and go into endocrinology. No one should have to fight this hard for a better life. This is wrong on so many levels. It has taken me two years to get this far and I want to make sure other adrenal patients won’t have to face this.

I have so many dreams for life again.

I am still in a great deal of pain from my hysterectomy but I am going into 2018 with a renewed hope. A hope that my devastation will lead to my restoration.

I am Overcoming Addison’s, one day at a time.

So I hope whoever is reading this receives a happy basket for 2018. ❤

Video below by the magnificent Angela Milnes who is a pioneer for the cortisol pump in the U.K. This explains the cortisol pump ❤

 

 

All content and images used on this site are owned or licensed by Winslow E. Dixon. Unauthorized reproduction is prohibited.  (Feel free to share stories and save images, however all images, written posts and blogs are owned by Winslow E. Dixon and protected under copyright law)

 

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What is Fludrocortisone?

This was written by an Addison’s disease patient and 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.

What is Florinef  “Fludrocortisone?”

Medication used as partial replacement therapy for adrenocortical insufficiency and for the treatment of salt-losing adrenogenital syndrome.
May also be used for treatment of POTS syndrome. A potent mineralocorticoid medication used to replace aldosterone in adrenal insufficiency and salt wasting syndromes.

What are Mineralocorticoids?

A class of steroid hormones produced in the adrenal cortex and influence salt and water balances in the body. The main mineralcorticoid is aldosterone.

What is Aldosterone?

Aldosterone affects the body’s ability to regulate blood pressure.
It sends the signals to the kidney to regulate the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine.
It causes the bloodstream to re-absorb water with the sodium to increase blood volume.
Aldosterone also helps maintain the blood’s pH and electrolyte levels.

Understanding Aldosterone-

Aldosterone is closely linked to two other hormones: renin and angiotensin, which create the renin-angiotensin-aldosterone system. It is essential in regulating proper blood pressure and electrolyte balance in the body.

What is Renin?

An enzyme secreted by the kidney that is part of a physiological system that regulates blood pressure. In the blood, renin acts on a protein known as angiotensinogen, resulting in the release of angiotensin I.

What is Angiotensin?

A group of hormones that are part of the renin-angiotensin system.
To create angiotensin, the liver creates a protein called angiotensinogen. This protein is broken up by renin, which comes from the kidney. This forms angiotensin I. Angiotensin I passes through the bloodstream, where it turns into angiotensin II, which is the primary form of the hormone that affects blood pressure and other areas of the body.

Explanations-

Simply put- Proper aldosterone levels are essential to the synergy of chemicals in the body.  In adrenal insufficient patients- fludrocortisone is used to synthetically balance electrolytes and blood pressure levels.

Dosing-

With any other steroid medication, general recommendations are to start out on the lowest dose possible and adjust according to blood renin levels and electrolyte levels determined through a blood metabolic panel lab result.

Warnings-

Fludrocortisone is a potent medication that directly affects cardiac function.
Too high of a dose can lead to high blood pressure, stroke, swelling, weight gain and mental disturbances. Be vigilant of any changes your body is presenting and contact your doctor if you exhibit any of these issues.

Sources-

https://www.rxlist.com/florinef-drug.htm

http://www.hormone.org/hormones-and-health/hormones/aldosterone

https://www.britannica.com/science/renin
http://www.hormone.org/hormones-and-health/hormones/angiotensin

http://www.sciencedirect.com/topics/neuroscience/mineralocorticoids

The Hormone Health Network

Science Direct

Townsend- Epilogue

I am excited to be publishing my fiction series- The EverVigilant Trilogy!

The first book- Townsend will be out at the end of this year.

Below is the epilogue to book two-

Townsend and the Guardians of the Gates.

Please read and let me know any opinions ❤

 

 

Epilogue-

Within the shadows, my eyes beheld the fierce sight of the last dragon that existed. Ignis stood proudly guarding the entrance to the Gates of Fury. His deep, black scales shimmered amidst the gloomy scene of the dark realm. He flew in front of the gates, expelling a stream of smoldering flames from his throat.  Noticing my presence, the beast roared; alerting me I wasn’t a welcome visitor.

I spread my angel wings and charged through the Gates of Fury. The massive beast took to the air after me.  Despite my direct orders from the Assembly of Angels, I entered the dark realm to rescue Neal. Encountering a dragon was not part of my plan.

I kept my eyes ahead of me and tried to stay ahead of the dragon that was after me. I had to rescue Neal, no matter what the cost.

As the first EverVigilant Angel, I had to right all my wrongs.

Would I be able to atone for what I’d done?

 

Read Townsend and the Guardians of the Gates to discover if she succeeds in her quest.

EVtrilogy

The EverVigilant Trilogy by Winslow E. Dixon

Ignis

 

All content and images used on this site are owned or licensed by Winslow E. Dixon. Unauthorized reproduction is prohibited.  (Feel free to share stories and save images, however all images, written posts and blogs are owned by Winslow E. Dixon and protected under copyright law)

Hope for the Homebound.

Writing this to introduce HOPE FOR THE HOMEBOUND.

I have started a facebook group for those of us who are homebound due to illness, pain, disability or circumstance. I know we face unique challenges and sometimes feel isolated and misunderstood.

This group is to help us realize we are not alone, to uplift others in our situation and talk with people who understand what it’s like to be homebound.

HOPE FOR THE HOMEBOUND

Above is the link, please share with anyone you know who is homebound.

No one should feel lost, forgotten or isolated.

My intention is to get a pen pal system going between members and eventually get the group to do projects such as writing letters to the military, cards for elderly nursing home residents, children’s hospitals, etc.

Being home all the time presents with it’s own unique challenges. Loneliness and boredom tend to sink in. I feel as if small gestures such as writing letters and communicating with others tend to make life much better ❤

This world needs so much love…..Let’s help spread light in darkness.

Thanks for reading.

 

Love, Win.

Carry the torch

Life is a team sport.

I have never been an athletic person. As long as I can remember I have hated any type of forced physical activity. P.E class my freshman year in college was an absolute disaster. One of those- oh, yep THAT’S WINSLOW events. 😀

I was really smart *insert eye roll here* and scheduled my P.E class for 7am Monday, Wednesday and Friday my freshman year of college.

The class was beginners badminton. Oh boy- I was BAD at it.

The teacher didn’t like me because I am neither right or left hand dominant (I can write with both)

I kept switching the racket in both hands. “USE YOUR DOMINANT SIDE!” She would yell.

To which I’d reply, “I don’t have one!”

She never believed me and assumed I was just trying to be trouble.

Well, you should seen her face when I got out of running the mile…..

😀

Irony is truly a funny thing. The college I went to (which I shall not name at this point) was a STRICT, whacko, religious school with crazy people and crazy rules.

I remember seeing one of my fellow students, who was a notorious religous fanatic that the school rewarded and gave him WAY to much power. He was the lunchroom attendant. Let’s call him…Terrance…

SO Terrance was a jerk and wrote people up right and left for the dumbest things in the name of  “good rules and godliness.” I got in trouble one time for taking more than one cookie 😀 😀 😀   This dude was relentless and a complete self righteous jerk.

Terrance was hopping around on crutches one day and all my little, immature, freshman heart could think was, “Wow, he deserves it.”

HAAHH, the universe or karma or whatever heard me…. three days later I tore the tendon in my ankle/foot from getting it caught in the stepladder leading up to my top bunk in my dorm room.

I was supposed to run the mile that week.  I rolled up to the gym in a wheelchair. 😀

That teacher gave me a zero. I ended up just dropping the class because she wouldn’t work with me, even though I actually was injured.

I tried. Things were just out of my control.

In life, the same thing happened. I am temporarily out of the race. My health isn’t at all where I want it to be right now.

I watch my family and friends work, go to school and live.

Life is a team sport. I need help right now.

They are carrying the torch, until I can enter the race.

I like how in those sprinting races they do those runs where there’s a team of six or so and they all run like crazy until they hand the baton off to the next athlete.

I’m just waiting until it’s my turn.

I am blessed to have people running my race for me, helping me as I recover from what was almost my death. I am still in the race, but it’s not my turn to run yet.

Don’t give up.

Your turn is coming.

 

All content and images used on this site are owned or licensed by Winslow E. Dixon. Unauthorized reproduction is prohibited.  (Feel free to share stories and save images, however all images, written posts and blogs are owned by Winslow E. Dixon and protected under copyright law)

Sundays & A Piece of Humble Pie

Sundays are for whatever reason, the most difficult days for me. I have yet to figure out why. Maybe it’s because it’s the last day that everyone around me is off work. Maybe it’s because I long to be back in church services and I’m not able to yet. Maybe it’s because I know that I won’t  be starting another work week like I used to.

No matter what the reason, I am apprehensive today.

Tomorrow I have a jam packed day of stuff I just DO NOT want to do. I have to be at the local social security office first thing in the morning regarding my fight for disability, then I have to travel the two hour trip to the hospital for my kidney/bladder procedure and renal ultrasound. I don’t drive, so I have to  be driven around like Miss Daisy…

It’s going to be a JAM PACKED DAY of pain, frustration and stress.

In the wake of all this nation is going through right now, I feel very oppressed.

I woke up with this song in my heart- If you haven’t heard it- Click PLAY. I needed the message of hope today.

 

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me

 

I am learning to enjoy my slice of humble pie. In my pride and arrogance, I don’t want to be driven around and taken to doctor appointments/procedures. I don’t want to have to admit I need help.  I don’t want to reach out. I want to be INDEPENDENT.

But that’s not where I’m at right now. I choose to see myself as blessed to have people WILLING TO HELP.

Swallowing your pride is one of the hardest actions you’ll have to take in this life.

As I’ve come to realize, control is truly an illusion.

All we have. All we are. All that surrounds us- isn’t really in our control.

We have no idea what our days will hold.

We have no idea how many days we have on this earth.

We can only control how we REACT to what happens to us.

The alpha female in me wants to rebel. I want to yell and scream at the heavens-

WHY IS THIS MY LIFE? I don’t want to need help. I was doing fine! I was working, in school and saving money. I was SUCCEEDING!

But then again, what is true success?

Is it money? Is it power? Is it independence?

Honestly, the only success I want right now is contentment.

I want to appreciate what I have and who I share it with.

I can choose to resent the humble pie I’m being forced to eat, or I can enjoy it…..

BON APPETIT!

 

 

Medication Review- Elavil/Amitriptyline

*DISCLAIMER- I AM NOT A DOCTOR. THIS POST IS SIMPLY A PATIENT TESTIMONIAL ON MY EXPERIENCE WITH THIS MEDICATION. DO NOT START OR STOP ANY MEDICATION WITHOUT CONSULTING YOUR HEALTHCARE PRACTITIONER*

(Side note- I believe the combination of modern medicine, holistic health, diet and nutrition is essential to achieve the best health possible. Big pharma doesn’t have all the answers, but prescribed medications DO have their place, just as holistic therapies do as well.)

I have found that chronic illnesses tend to stack up. Most the time when you see someone that is chronically ill, they have a long list of diagnosis.

My list is this- Endometriosis, Medullary Sponge Kidney and Addison’s disease. These three issues cause other problems such as I.C, chronic migraines,myofascial pain, kidney stones, frequent infection…blah blah blah…my long list of issues.

Medical whack-a-mole. You fix one problem and another pops up.

I am writing this blog to share my experience with a medication called Elavil/Amitriptyline   (you can click that for a full description of this medication)

My urologist prescribed this medication to try to help the pain that accompanies my medullary sponge kidney disease. With chronic infection and kidney stones, my urinary tract stays inflamed. The hope was with this medication, it would ease the pain of the I.C.

The side main effects I was warned about- weight gain and drowsiness. Two things I already struggle with….with addison’s disease I already take steriods…so anything else adding to my weight just upset me.

I filled the RX but let the medicine sit in my drawer…too afraid to be even sleepier or gain any more weight.

But my pain levels only continued to rise. At my pain management appointment I expressed my concerns to the doctor- who then suggested Elavil.

So I figured, why not…..

I started the medication: 10mg before bedtime every night.

I saw improvement in ways I didn’t expect.

Most people with addison’s will tell you we all have this weird, vague all, over aching pain. I always feel like I’ve run a marathon. My muscles stay in a constant state of post work out soreness, even if I have done nothing. We’ve been told it’s everything from fibromyalgia to myofascial syndrome…… I think it’s because cortisol is involved in muscle tissues and when you don’t create it naturally the synthetic replacement just isn’t the same and therefore we hurt. Can’t prove it and I could be wrong, but all  I know is my first symptom of low cortisol is muscle pain and tightness.

Though it’s still a factor, I found with the Elavil my over-all tenderness improved. Getting out of the car was easier..getting out of the bathtub was less painful…..walking down stairs didn’t leave me in tears…..I could move easier and wasn’t as sore.

The bladder and kidney spasms improved as well. I still battle a lot of inflammation and pain from the kidney stones…but I don’t feel like I’m being poked and stabbed quite as much.

Elavil is in the antidepressant medication family- it is a tricyclic antidepressant.

Though I have not been diagnosed with depression, I do feel better on this medication. I wouldnt have considered myself depressed, but I will admit I live a difficult existence. No one wants to be dependent, disabled and out of work at 25. I feel that it has helped me mentally as well.

So my review of Elavil is a 10/10.

Havent really seen any negative side effects, not that I would know considering I stay sleepy and I was already battling my weight thanks to the steroids.

I would fully recommend this medication. I have seen improvement on a low dose.

Best wishes to all. Hope you find health and hope ❤

Don’t be afraid to try new things ❤