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5 steps to successfully getting the care you deserve!

Until 2008, when I first got sick, I had no idea how important it was to become my own advocate for my health. And not just any advocate…I had to learn how to be SUCCESSFUL at getting the care I deserve.

Normally when people get sick, doctors are able to diagnose you and help guide you back to good health. That was definitely not the case for me. I spent the next 8 years fighting for answers. Even after I was diagnosed with Adrenal Insufficiency, I had to continue to be a strong advocate. In fact, I had to turn the knob up on just how Bad Ass I needed to be. After all, this is my life and if I truly want to live and not just survive, I had to take charge and become the CEO of my health. So, how does one go about being a Bad Ass Advocate you may ask?

  1. You must decide that your health is top priority for you. This one took me a while to “get.” I had no idea in 2008 that I was about to be chronically ill for the rest of my life. One day I felt perfectly healthy, and in a blink of an eye, I got sick and stayed sick. I thought I had a stomach bug, but after a few trips to the ER, I knew I had to figure out what was going on, since they only treated me for my symptoms and sent me on my merry way. I went to go see my doctor, she ran some tests, but ultimately just ended up putting me on large doses of Zofran and pain pills as a treatment plan. She never even went over the tests with me. I got the results in the mail, but wasn’t sure what they all meant. I wasn’t thrilled with the treatment plan, so I decided that if I was going to get better, I had to do whatever it took to get some answers. After all, I had three kids that depended on me.
  2. Get ready to do research on your own. Had I just followed my doctor’s treatment plan, I most likely would be dead right now. I started researching what my test results meant and what could possibly be wrong with my body. I took this information to my doctor and insisted on further testing. That started my journey of seeing specialist after specialist and having more tests run on me than a lab rat. I became very knowledgeable and I wasn’t afraid to ask for certain tests to be performed. After I was diagnosed in 2016, that’s when I ended up doing the most research and to this day, I still do ongoing research. This is my life and my body and just relying on doctors for answers and treatment plans proved to not be in my best interest. When I see a doctor, I’m always prepared with a list of questions to ask. It doesn’t matter if it’s my PCP, my Endocrinologist, an ER doctor or an admitting doctor. Also, joining support groups online can be extremely beneficial. Not only have you done your own research, but now you have other people to talk to that have done their own research that can help you as well.
  3. Find doctors who are on the same page as you are in regards to your health. Think all doctors are the same? Think again! I’ve been through my share of doctors over the years. When I realized that I knew more about Adrenal Insufficiency than my Endocrinologist, it was time for me to find a new one. I started asking for referrals and now have one that works with me and respects my knowledge. As far as a PCP, my last one literally would throw her hands up in the air whenever I brought up Adrenal Insufficiency and say “I’m not touching that.” After being placed on medications that interfered with my Adrenal Insufficiency, and her lack of knowledge, compassion and willingness to do any research to help with my health, it was time for her to go. I then decided that I was going to interview doctors prior to becoming their patient. Luckily, I found a wonderful PCP who has done extensive research and continues to do research so that he can properly treat my illness. I have also fired doctors in the hospital because we couldn’t get on the same page. Yes, you can fire doctors! You don’t want to leave your life in the hands of a doctor that might do treatments that will send you to the ICU or the morgue.
  4. Question every medication and every test being performed. If you’ve been to the ER, you know that typically, you’re being poked with a needle before you even see a doctor. And sometimes, you’re even getting medications that they ordered prior to an examination. It can be challenging when you’re not feeling well to ask the questions, but this is crucial. If you’ve done your research, you know which tests should be run. You should also know which medications work best to treat you and which ones to avoid. Trust me, this did not fully compute with me until I learned the hard way. Not only in the ER, but also the hospital, with my PCP and my Endocrinologist. There’s a reason why they call it practicing medicine. Most doctors won’t take the time to know your history, and they will simply run tests and give medications that they’ve given to other people in the past, assuming that this is in your best interest. I’ve had way too many bad reactions or unpleasant side effects from medications that I wasn’t even sure of the reason why I was on the medication in the first place. My list of allergies not only includes what I’m allergic to, but also lists medications where I’ve had a negative reaction to. I’ve also had so many CT scans and MRIs that I am in danger of getting cancer. You have to weigh out your options, but first, you have to be bold enough to question why a test is being performed or why a medication is either being prescribed to you or going into your IV site. Is the test necessary? What are the pros and cons of the medications and do I really need to be on the medication? You’ve seen the commercials where they glorify a medication like it’s the greatest thing in the world, but then list all of the harsh side effects. Unlike doctors, those commercials are regulated to list side effects and potential problems that may arise while taking the medication. So, make sure that every doctor that is giving you medications or running tests on you is a walking commercial, so to speak.
  5. Take a proactive approach to your health instead of a reactive approach. God only gives you one body in this lifetime. Don’t sit back and assume that the treatments you are getting are the best for your health. Furthermore, don’t wait on the sidelines to start feeling better. I had issues every month when I got my period. More times than not, I ended up in the ER because of the issues. I decided to have a hysterectomy, after doing my research of course, and it turned out to be a huge blessing in disguise. I had some major issues going on inside of me that only could be diagnosed with the hysterectomy. Recently, I got on the adrenal pump. Prior to that, I spent two years taking oral steroids every 4 hours and had to play the guessing game of when I needed more or if I needed to take them earlier than the 4 hours. I was basically reacting to what my body was trying to tell me, and often times, my cortisol was so low that I couldn’t think straight in order to know when I needed extra steroids. During my latest hospitalization, I decided enough was enough. I no longer wanted to continue the path that I was on. I no longer wanted to refer to PeaceHealth Hospital as my second home. So I reached out to people that I knew that were on the pump and devised a plan to get on it as soon as I was released from the hospital. The pump has drastically changed my life so far. I am now getting a constant amount of cortisol in my body, comparable to a person without Adrenal Insufficiency. I’m no longer waiting to feel better. I feel amazing and it has helped me to make plans and goals for my future. But here’s the key….I didn’t wait for my Endocrinologist to suggest it for me. I went to her with the idea. Her initial response was “But it’s not FDA approved yet in the U.S.” I could have just accepted that answer and waited for the FDA. Instead, I was prepared for her to say that and I had a plan for convincing her to support me, which she did. Now kids, “THIS is my new normal” and I couldn’t have done it had I not mastered being a Bad Ass Advocate for myself!

-Adrenal Alternatives Contributor- Jen Hudnall

Up-dose or Collapse: A Lesson about managing cortisol with 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.

Most of us “adrenal disease veterans” know this.

We know we have to constantly be vigilant of our cortisol levels.

Yet, most of us still struggle when deciding to up-dose.

We typically think things like……

Do I REALLY need more cortisol?

I can push through this….

I’ll be fine….

Some of our endocrinologists scold us for up-dosing or relying on a higher basal cortisol dose.

All these things flood our minds when we are trying to manage our adrenals artificially.

Unlike diabetics who can check their blood sugar, there is no cortisol meter for adrenal patients. We have to constantly be aware of our levels, which can present with various signs of “lows” and everyone is different.

How do you know when you need to up-dose?

How do you know when your cortisol replacement is correct for you?

I had to learn a hard lesson recently about the true importance of up-dosing with adrenal insufficiency.

I have adrenal disease, endometriosis, medullary sponge kidney disease and I am currently on the cortisol pump.

This past weekend, I was a bridesmaid in my baby brother’s wedding. The wedding required me to travel, stay away from home and was very physically taxing.

The wedding was Saturday, we traveled to the destination on Thursday and the weekend was filled with pre-wedding activities.

It was a massive struggle with my health. The traveling alone was taxing….then the rehearsal dinner….entertaining guests and having to sleep on a couch….

I started to develop low symptoms, which for me are unbearable cluster migraines which usually result in temporary blindness.

A board member of this Foundation and fellow adrenal disease patient texted me to check on me. I told her my migraines had come with a vengeance.

“Are you sure you are replaced enough? Sounds like your low.” She said.

“Yeah, I’ve bolused a few times here and there.” I responded.

(My bolusing was 2-4mg here and there…which I now realized was like nailing jello to a tree with all the activity, heat and symptoms I was enduring)

I did all my pre-wedding duties and was exhausted.

When I woke up the day of the wedding, my migraine was even worse. But it didn’t matter. I HAD to DO what I HAD to DO!

I was determined that I was going to be in my baby brother’s wedding.

I determined that I was stronger than this disease. Mind over matter was going to work for me that day!

So, I pushed through……

My board member friend called me.

“Winslow, I just wanted to call and make sure you were preparing for today. Have you bolused? Did you adjust a temp basal increase?” She asked.

I had never before done a temp basal increase. I always think I can just endure whatever I force myself through.

I explained to her I’d bolused here and there and she convinced me to set my rates to a 200% temp basal increase. I hesitantly did it, mainly because the migraine was at an unbearable point and I hoped it would quell the awful pain.

My pump rates were set higher and I continued to get ready for the wedding.

Migraine didn’t stop but I pushed through anyhow.

The first duty of the day was to take pictures before the wedding.

Little did I know, these pictures would be done fully dressed in the ballgown bridesmaid dress, in the Florida heat with tons of walking around to different areas outside.

DSC_0140.JPG

(Here is a picture during the ceremony, as you can see the dresses were not made for the heat of Florida in the summer!)

We started taking pictures at 11:30 and didn’t get done until 1:30. I had spent 2 hours in the heat. Being salt wasting, I struggled to keep control of my consciousness.

My head was killing me. All I wanted was to lay down in a cool room and eat an entire shaker of salt and drink cold water.

But the wedding started at 2:00pm. I had to push through. I had to make it. I had to smile and look like I wasn’t as absolutely miserable as I truly was.

I didn’t have any water so five minutes before the wedding, I choke down/dry swallowed a migraine pill (sumatriptan) and hoped it would quell the unbearable throbbing going on in my head.

I was in a corseted dress and couldn’t get to my pump. I felt myself struggling to stay conscious. Even with the temp increase, I was getting dangerously low. I quickly asked my mother to access my pump and give me a bolus. This was a challenge because it was hooked to my spanx in the back of the dress. Mom had never before touched the pump so explaining how to bolus was a challenge, especially since we were in a hurry.

She bolused the max my pump would at 5units (mg)

I quickly rushed into the wedding line up and smiled the best I could.

During the wedding, I stood the whole time. My headache only got worse but I kept smiling.

Thoughts of my stubborn personality mindset swirled through my head.

I will not ruin this day for Joshua and Rachael.

I can make it through this.

I will not throw up.

I am stronger than my disease.

I will not let anyone see me collapse.

I’m stronger than this pain.

Just breathe, Winslow. Just breathe……

You are strong enough to endure this suffering.

Smile…..don’t ruin this for your brother….

I made it through the wedding, they said I do and I wanted to say GOODBYE and go lay down.

I’ll just sneak off and miss the reception….. I thought.

No. We had pictures to take after the wedding.

After that, I was informed we would be announced into the reception as the bridal party.

I realized sneaking away wasn’t an option.

My assigned seat was right next to the bride at the head table.

I felt my cortisol dropping. After I was announced into the reception I grabbed my plate, acted like I was going to get food and just kept on walking back into the church.

I started losing my eyesight, getting tunnel vision and realized I was heading into crisis.

I wasn’t going to ruin this day for my brother.

I refused let everyone witness the trainwreck that my health is.

I struggled to walk back into the room the bridesmaids had gotten ready in, turned the lights off and collapsed in the floor.

How am I low with a 200% increase?! I wondered.

I suddenly got a strong wave of nausea and started vomiting.

Crisis, I knew I was headed straight into crisis.

I texted a friend of mine with my fading eyesight and hoped they’d alert my family…which they did not……

The bride’s sister found me laying in the floor of bridal suite room.

My intention was to slip away and get it together enough to return to the reception. But I was too low and ended up vomiting and passing out.

By the time my dad got to me, I had lost my eyesight and was fading in and out of consciousness.

He took me back to the house we were staying in. I laid down and tried to keep it together.

I knew I needed more cortisol.

My good friends from home had come to the wedding and immediately came to my aide so my dad could return to the reception.

My best friend, her sister and her mom helped me get out of my dress, administered more cortisol and gave me electrolytes (pedialyte).

Throughout the whole wedding, I had only had 50mg of cortisol. My normal dose is 37mg daily.

Though I had 200% increase, it was NOT enough for all that activity, physical and emotional stress.

Had the board member not called me and made me increase my basal rates, I’m quite sure I’d have suffered a major crisis and may not have survived.

My choices were either UP-DOSE or COLLAPSE.

The lessons I learned-

1-There is NO magic number for cortisol. If you need it you need it!

2-Do not be afraid to updose.

3-Give your body what it needs!

4- Artificially managing a body system is complicated and needs careful attention.

5- It’s better safe than sorry.

Take a page from my stupid book and up-dose BEFORE you crash.

This is your life, your disease and your health.

Take care of yourself. Give yourself enough cortisol.

Wishing you comfort and cortisol,

Winslow E. Dixon, Adrenal Alternatives Founder

Thank you foundation board member, Erin Fallon for talking some sense into me.

DISEASE EQUALITY- DIABETICS AND ADRENAL PATIENTS BOTH DESERVE ACCESS TO INFUSION PUMPS

DISCLAIMER- This post should not be used to diagnose, treat or manage any condition. Management of adrenal disease is serious and requires medication that is managed by a reputable endocrinologist. There is no cure for adrenal disease and this post is not suggesting this treatment is a cure, only a management tool.

Adrenal Insufficiency and Diabetes are both difficult diseases to manage and this Foundation sympathizes with T1D and T2D patients. Both are serious, endocrine 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 hormone 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, this 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 with pills. 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.

Below is what the natural circadian cortisol rhythm is supposed to look like-

naturalCircadian

This is the circadian rhythm of an adrenal patient on HC.

UnnaturalCircadian

(This image was created using Clearly Alive‘s Steroid Dose Plotter)

Notice how it is a constant up and down motion? This causes fatigue, headaches, irritability, blood sugar issues and lowers quality of life.

The quality of life is vastly poor due to this lack of balance. Oral HC cannot do what natural cortisol can.

But there is solution to help create a more natural circadian rhythm!

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 a pump, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the ups and downs with oral HC 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 therapy can literally give adrenal patients their lives back, and yet so many are unable to receive this treatment.

Professor Hindmarsh, is a pioneer for this life changing treatment. He has done much international research and has proven that every single patient he has placed on this therapy found improvement. Yes, 100% success rate! That is unheard of in the rare disease community.  Granted, this is a small group of patients who’ve been exposed to the pump so as awareness grows that stat may fluctuate.

The pump is not a cure for adrenal disease, but it is an option and a ray of hope for those who are bedridden with no quality of life.

If there is another option for adrenal disease, why is the pump therapy only available to diabetics?

Are adrenal patients not worthy of a better life?

Adrenal patients should have the same rights as diabetic patients. All diseases should have the opportunity to receive the best treatment and care possible.

PumpAware

Adrenal Crisis: Another eye opener into why we need awareness

Personal Experience of an Adrenal Crisis.

July 5th- I was having a lot of weakness in my legs and I felt like I had run 10 miles. I couldn’t catch my breath when I was talking. I started to feel really different, something wasn’t right. Ended up having to use my wheelchair because my legs couldn’t support me. I got really dizzy as my husband was pushing me to the couch, and then I couldn’t breath. I was having a very hard time getting air. 911 was called and they took me to the ER.

The Dr. refused to give me hydrocortisone until he talked to my endocrinologist.

He ordered a chest X-ray and CT scan, bloodwork and urine sample. All those came back great (They were testing for heart attack symptoms), which we told them several times, I was in an adrenal crisis.

Still no hydrocortisone.

They gave me meds to slow my breathing. Once it hit the IV my whole body tensed up, I was shaking, I couldn’t move and I couldn’t breath. I started to fade, the nurses voice and my husbands were in the distance. I was scared because everything was black and they were next to me but sounded like they were so far away.

Then I stopped breathing.

The nurse was yelling at me to breathe and was pounding on my chest with her fingers, she kept telling me this and pounding on me, again I slipped into the black and her voice was far away. She slipped some oxygen on me, finally, and I was brought back. After that everything leveled out.
Since I wasn’t having a “normal” adrenal crisis, they sent me home.

I rested all day but I still couldn’t use my legs, not even enough to use to get myself in the wheelchair. It was really scary. For all of us.

July 6th-I was just exhausted (but that’s normal). I was able to eat without having that horrific pain. (July 3rd and 4th I did Ex-lax and water to see if that would clean up stomach up enough where I could eat without the pain, nausea, and severe bloating).

This was a reminder of the severity of my disease and that I need to really take it easy, not push myself, and let go of the things (and people) that cause a lot of stress in my life.

I’m so proud of the boys for stepping up the way they did. My middle son took my youngest to the bedroom and kept him calm and distracted while the EMTs were here. My oldest held it together, tried to keep me breathing, was telling the EMTs over and over that I needed my shot, what disease I had and that they needed to give it to me. He answered all the questions, because I couldn’t talk, he even corrected my husband about my age.

My husband handled it okay. He was scared and broke down a bit, but my oldest did good at calming him as well. I’m thankful they did amazing at advocating for me. I’m so proud of them. I just hope that doesn’t happen again, because I was terrified.

I can’t tell you how often this happens, people denied hydrocortisone because the doctors don’t know anything about Addison’s disease.

Instead of listening to the patient, they deny them the one thing that will save their life. I get that there are procedures, but most people (like me) are told “no.”

I know of four people in groups I follow on social media (in the year I’ve been apart of it) who have died after going home from the ER because the doctors refused to give them hydrocortisone. They were told they were fine or over reacting and that nothing was wrong with them.

This really angers me that there is no understanding of this disease and doctors don’t take it seriously because they don’t know or don’t understand it.

I want to make my voice heard and I am doing what I can to bring awareness.

-Chronic Mom, Adrenal Alternatives Foundation Contributor

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Recently passed California bill harmful to pediatric adrenal disease sufferers

 

The SCR- 110 Sex Characteristics Bill is a bill California presented that was amended in the Senate on May 9 2018.

The context of the bill is coming from the wake of the gender queer and transgender issue. This bill prevents parents from making a decision on whether a child should be deemed male or female In those born with ambiguous genitalia.

Where this is concerning is there are genetic deformities and congenital diseases that are negatively impacted by this bill.

In these specific cases, this bill negatively impacts children born with diseases such as congenital adrenal hyperplasia. CAH is a life threatening disease which can cause children to be born with ambiguous genitalia, hormonal issues and requires life long steroid cortisol replacement medications.

Most pediatric endocrinologists agree that when CAH causes genetic abnormalities or genital mutation, these cases require medical intervention.

The danger of this bill is that these children will not receive the care that they need because of laws passed by politicians NOT educated informed physicians regarding medical care.

The concerning part is when decisions of parents and physicians are taken away by legislators who have no education regarding the dangers of improper medical treatment with diseases such as CAH.

It is understood, the concept of not wanting to cause someone to have gender dysphoria or to be forced to choose a gender; but in this case these specific medical issues need to be addressed.

This bill takes autonomy away from parents and physicians to make that choice.

Children, especially females born with CAH typically have ambiguous genitalia that needs to be corrected. These children can also suffer from hormonal issues such as polycystic ovarian syndrome.

This bill will inhibit the proper care of these children.

The treatment of CAH has nothing to do with gender identification.

Bills like this take the power of medical decisions out of parent’s and medical professional’s hands.

Below is a brief excerpt of the bill so you can fully understand the context.

This bill was amended by Senator Wiener, and is as follows-

This measure among other things called upon stakeholders in the health professions to protect children born with variations of sex characteristics.

Whereas between 1% and 2% of individuals born with variations of sex characteristics; which may include differences in genital anatomy from a hormonal variations or internal reproductive structure: Whereas intersex refers to the rare variety of physical indicators that indicate the differences which occur about the same frequency as do green eyes.

Whereas the majority of babies born with these variations are healthy and do not require medical or other interventions related to sex characteristics until puberty.

Beginning in the 1950’s physicians in the United States began performing irreversible surgery on intersex infants without medical justification and attempt to surgically or hormonally force them to conform to what the  physician perceived as a typical male and female body.

Source- https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201720180SCR110

So what can we do about it?

The Judiciary Committee phone number is (916) 319-2334.

It is imperative that we have representation from patients, family members and medical professionals to stop this bill.

This is not an attack on the gender-queer or transgender population, this is a protection for children born with a serious, life threatening, incurable disease.

 

This bill states- “California should serve as a model of competent and ethical medical care and has a compelling interest in protecting the physical and psychological well-being of minors.”

 

If that be the case, I urge Senator Wiener, Senator Glazer and Assembly Member Limón to reconsider this bill and amend it to protect children with CAH.

Please call and request an amendment to the SCR-110 Sex Characteristics Bill in favor of children born with CAH.