April is Adrenal Diseases Awareness Month…

Did you know…

*Many patients have to fight their doctors to provide them a prescription for an emergency injection of hydrocortisone

*Many EMS crews cannot administer patient medications, despite the fact that not every ambulance is equipped with or allowed to administer Solu-Cortef

*Adrenal crisis can cause permanent damage to organs, and death within as little as 30 minutes

*In the event of a crisis, and the moments leading up to one, patients often find themselves so disoriented that they are unable to administer a multi step injection

*More funding needs to be put into research and development for a simple emergency injection, like an EpiPen

*Many patients suffer from complications from other illnesses which make absorbing oral medications difficult or impossible, yet they have to fight epic battles with insurance companies to adapt insulin pumps to administer Solu-Cortef instead

*Even with a modified insulin pump, there is no easy way to prep Solu-Cortef for use in the pump

*There is no cure for adrenal Insufficiency, and despite the growing numbers of AI patients, it’s considered a rare disease, therefore doctors rarely have knowledge about it

*Despite being categorized as “primary,” “secondary,” and “tertiary,” all AI is treated the same way, and carries the same risks. Just because it isn’t called Addison’s disease for every patient, doesn’t mean it isn’t life threatening

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What’s an advocate?

When I think of an advocate, my first thought is someone who speaks up for a child during a custody battle, or a person who handles the daily needs of a person with a severe disability.

What I’ve come to learn over the last two years is that an advocate can be so much more versatile. One could hire an advocate for them, or one can become an advocate for themselves or others. I’ve become my own advocate, but also find myself becoming more of an advocate for others as well.

Turns out, I’m not the only person in my community who’s health needs aren’t being met. Over the years, I’ve become something of an expert patient. I know what lab tests should be run, I know how to interpret the ranges on those labs, and I know what can be done to make the next move for getting a diagnosis and help. I’ve seen at least three other people in my town of 7,000 run up against medical mysteries and doctors who don’t really care to dig any deeper than their old textbook on the shelf.

The problem comes down to a few possibilities.

First, that doctors just don’t have time to read new research. This is my least favorite excuse because as a teacher, I not only had to see all my “patients” at the same time, all day long, but my workload consisted of a lot of unpaid hours, for a much smaller salary than a doctor.

Second, that rare diseases just don’t have enough research available for doctors to make an informed diagnosis. Again, this is problematic because if I, as a non medically trained individual, can find the research to support my myriad of illnesses (and even how they function as comorbidities!) then the doctor certainly has access to the same information.

Third, the doctors practicing today are overburdened with expectations, legalities, and heavy case loads that they’ve stopped caring to go above and beyond. This is my best guess at what’s happening. I had a doctor, a general practitioner, tell me that if my endocrine journals disagreed with his conclusion that lab values were NOT acceptable, that I was free to find a new doctor. That was not my intention, just that this doctor be educated about his patient. Instead, the ego of the M.D. got the best of him. And there’s at least a dozen other doctors in my town who operate under the same premise that their M.D. is worth more than any research I could possibly find. Even if that research came directly from NCILB, Mayo Clinic, or Cleveland Clinic.

So, I’m an advocate. I don’t have a medical background. I can’t give medical advice. But I have experience, and as each medical zebra learns along the way, we all need an advocate. We need someone to look again and find the discrepancies in our lab work, the items which look fine-ish independent of the others, but combined show a problem.

An advocate is someone who can speak up for you when you’re too flustered, and tired of being told you’re just a busy parent, and your symptoms are nothing. Because as so many of us have learned, it’s not “nothing.”

Seeing the Invisible

When someone is diagnosed with cancer, entire communities rally together to provide support, whether it’s financial, food, or helping with errands.

But when a person is diagnosed with a chronic illness that isn’t cancer, there is often very little community involvement, nobody brings meals or checks in.

I’ve had several friends over the past year be diagnosed with life changing illnesses, anywhere from Hashimotos thyroiditis, Addison’s disease, Chrons, and multiple sclerosis.

While these illnesses aren’t often visible, and aren’t terminal in the same way cancer is, they can be equally devastating to a family.

This year, I challenge you to find a friend with a chronic illness and make a difference in their day. Don’t forget about them after the initial shock of the diagnosis. Don’t stop checking in on them periodically, and inviting them to do things even if you don’t think they can make it.

Invisible, chronic illnesses change a person’s quality of life, and it’s a very lonely road. Sometimes a simple act of kindness goes a long way!

How to be “active” in your world when you really can’t be

Active is a relative term.

For some, it means running a marathon.

For others it means grocery shopping.

For others still, it means taking a shower.

To me, it means doing the best you can on any given day.

In my town, there’s two women who really inspire me. One I know a bit more personally, and I know she has multiple sclerosis. She lives in a home sometimes and has a great deal of assistance, but I still see her out and around town quite frequently with her family.

When I see her, I think of “active” as being out with a smile. She has one of the most encouraging smiles because I know there’s a lot of pain behind it. I know she doesn’t want to smile some days, but her personality is to do what she can to hide her suffering and share joy with those around her.

She chooses to be “active” by sharing hope and love with everyone she sees. That doesn’t mean her family doesn’t see her suffering, and that they don’t see and cry with her, because I’m certain they do. That’s what family is for. But the way she is active in the community is to allow us to believe there is hope in chronic illness, and to believe that the world is good to beautiful souls like hers.

The other woman who inspires me is a complete stranger to me. I know nothing of what troubles her, only that she travels through town on a motorized wheelchair. It looks like it is difficult for her, but she does it anyway. She is active in rain, snow, sunshine, nearly every day she leaves her house.

I’m sure this isn’t to be inspiring, but out of necessity. I’d be willing to bet that she doesn’t have someone to help her, and she doesn’t want to take advantage of community resources to drive her places.

There is such a negative stigma against using charitable organizations and I wish that was different

But whatever the reason, there she is.

And whatever the reason, she inspires me.

Because her truth doesn’t need to be mine. All I need to know is that she doesn’t let her disability keep her from being a functional human being. She remains active in the community, even if it’s just going for a “walk” or a trip to the grocery store.

The first lady walks with her family, and smiles at friends she’s known for years.

Both women remain active members of the world around them, when it would be so easy to hide under a rock and allow self pity, pain, or loneliness to take control.

What keeps those of us with chronic illnesses strong and healthier is maintaining involvement with our community, and never giving in to the darkness that tries to take hold.

However it looks for you, always remain active.

Friendship is Magic, just like the ponies say…

Making and maintaining friendships with chronic illnesses can be especially difficult. When we are children, there’s a chance that someone will just find us and latch on as a friend, or maybe we were the outgoing ones, but as we get older, there’s much more judgment and expectation from our relationships.

For myself, my illnesses are compounded by anxiety, PTSD, and being introverted, and I have an incredibly difficult time making new friends.

I’ve also found that when you become sick, and it doesn’t go away, you tend to weed out friends pretty quickly. Those who used to call weekly, or text every few days to see how you are, stop calling. New people you meet aren’t sure what to say or do, maybe because they’re meeting you in your brokenness and not your former glory.

Some people are afraid to reach out, or are so introverted themselves that they rely on us to contact them, and they don’t realize how impossible that feels some days.

On top of my anxiety, and my need for quietly controlled interactions, I have a hard time making plans because I don’t know from one day to the next how I will feel. In general, I feel much more human than I have in years, but still wear down quickly.

I’ve never been good at being the first to call or text, largely due to a debilitating fear of rejection. It started as shyness when I was young, and now has evolved into a certainty that nobody wants to be friends with a sick person.

But that isn’t the truth. Plenty of people with chronic illnesses have friends, people who love them and would lay down their lives for them.

It’s too easy to fall into self pity: “Sue has more friends than me because they raised $10,000 for her medical expenses,” “Joe is more loved because his friends brought food when he couldn’t cook,” “someone else got something, while I got nothing, why do my friends not love me…”

I find myself thinking sometimes about how society jumps at the drop of a hat to raise money for people who are diagnosed with cancer, yet when someone is diagnosed with Lupus, Multiple Sclerosis, Addison’s, etc., there is no community fundraiser, no awareness walks, no show of solidarity. Friends stick with us through the initial illness, but some of them drift away the longer we are sick.

Friendship is more important now than it ever was pre-diagnosis. We need to know we aren’t alone, we aren’t burdens, we aren’t a drain on those who love us. We know that being our friends can be emotionally overwhelming at times, especially if we are frequent flyers at the emergency room. Being our friend can be taxing.

But it also can be exceptionally rewarding! We are not just sick or disabled, we are warriors! We fight every day for our survial, and often fight louder than others for what we believe in. We know life is too short to go it alone, and cherish the people who stay with us through it all.

I’ve only been diagnosed six months, but I’ve been sick a lot longer than that. The friends I’ve made since then, and the ones who have stayed by my side are precious and rare gems.

Friendship offers hope.

If you’re a friend to someone with chronic illness, consider ways you can show your friends that they are valuable to you, that they have meaning in your life. Bring a casserole, help with chores, bring chocolate and a movie some afternoon, call, text, check in. Most importantly, let us know that you see us, and that we aren’t alone.