An Open Letter To Bill Maher - Because Some Things Need To Be Said

Dear Bill Maher,

When I saw this tweet of yours in response to an ad during the Super Bowl for a medication to treat Opioid Induced Constipation, I can't say I was surprised. It really is what I expect of you. And that's fine. It's your thing.

But I have a few things I need to say as well.

See, at 37, I live with chronic pain.

I have rheumatoid arthritis. It is autoimmune and often flares without warning. When it does, it greatly affects my quality of life.

In addition to meds that try to control my pain, I am on long-term Plaquenil therapy and chemotherapy, both of which I take faithfully.

I am also on steroids to control my pain, despite the fact they aren't great news for my body in the long run. I prefer taking them for inflammation to having to take high dose opioids.

Altogether, my morning med regimen includes 17 pills, counting supplements.

Without my full medication regimen, I could not take care of my family.

I could not work in my job, that I love, as a nurse.

Some days I could not get out of bed.

So I wonder, when you randomly spout off, if you know about people like me?

I am not a junkie.

I wonder if you know that the suicide rate among chronic pain patients is three times as high as that of the healthy population?

Often, they don't get the help they need.

Often, they are treated like drug seekers.

So they go on until they can't anymore.

They were not junkies.

I wonder if you realize that about 8 million people in this country are on prescribed opioids for chronic pain?

Of course, as in any group, there are some who are misusing them, but surely you don't imagine that the majority of these people are junkies?

I am not angry and I don't wish anything terrible come your way, though, honestly, my younger self likely would have.

Rather, I hope that you develop a sense of understanding and empathy for the suffering of others.

Even if you don't, know that I will still offer it to you when you find that you are not, in fact, invincible.

Sincerely,

Miranda

Choosing Joy & Remembering Sara Frankl

A few weeks ago, I finished one of those sticks-with-you-for-always kind of books.

I planned to pass it along sooner but I managed to break my brain and that caused a slight rain delay. ;)

Anyway, several years ago, I used to read this wonderful blog written by Sara Frankl:

http://gitzengirl.blogspot.com/?m=1

She lived with several chronic autoimmune illnesses and ended up being confined to her apartment for the last few years of her life because she had life threatening allergic reactions to many foods, medications, and outside elements.

She also lived in severe pain.

However, her blog was so uplifting and insightful and I was amazed at her faith and her spirit.

If you look through it now, you have to go back to 2011 to find Sara's writing.

Her family has kept it going since she passed away when she was only 38.

Oddly, when I was reading it as she was writing, I was perfectly healthy.

Now, I too understand the chronic illness life. 

Maybe that's why I was meant to find Sara in the first place, to see how she still was such a light no matter how sick she was. It is so encouraging and inspiring to me now.

Her primary diagnosis, ankylosing spondylitis, is one of my secondary diagnosis. Mine is much less severe and it is just miserable at times so I can't begin to fathom how much she suffered with it.

All that said, I was really excited when I learned that one of her dear friends had collected some of her writings into a book:

And it couldn't have come at a better time for me.

Sara wrote often not only about choosing joy in whatever circumstances we find ourselves in but also in accepting those circumstances as where God has allowed us to be and knowing that He has a purpose for us in them.

She also wrote often about knowing that God will provide all that we need.

Though I know these truths and believe them wholeheartedly, during sickly times, extra encouragement is always appreciated.

One of many underlined "favorite" passages:

For everyone, particularly my spoonie sisters, add this to your reading list.

Please.

You'll be glad you did.

And, Sara, thank you for choosing joy and working through pain to share your thoughts day after day during your lifetime.

You left a beautiful legacy.

Rest easy, sweet lady. ❤️

An Unplanned Sick Leave

On February 2, I had already clocked out of my night shift and gotten in my car to leave work when I realized I had the supply room keys in my pocket.

I drove to the front door to return them.

Going in, I tripped over a mat that I had previous suggested be removed and fell, hitting my head on the brick stairs, very hard.

I was taken inside, gushing blood.

Rather than call 911, I was asked to take a drug screen and write an incident report of what happened.

Even after my husband arrived to take me to the hospital, I was told I needed to finish the report before I left, despite the fact I was bleeding and my dizziness was worsening.

I was delayed at work, while bleeding, for 45 minutes.

I was then told I had to go to an urgent care center that my company uses and could not go directly to the ER.

When I arrived at that Urgent Care, still bleeding heavily, they could not believe I had been sent there.

They put me in their system as quickly as possible and sent to me to the ER for a CT scan.

Oh, and while I was still at Urgent Care, work texted to see if I was coming back in that night!!!

Thankfully, I did not have a bleed (or I could have been in serious trouble by that point) but I did require stitches and have a concussion.

And, because my employer was so thoughtless about it, I bled for about five hours before getting stitched. I'm still a bit upset about that too.

The ER sent me home to be off until the following Monday.

Then, the next day, the director of my facility called to "check on me" and to tell me why it had been so important that I fill out his paperwork before I left.

I wonder if he has considered that legally it is invalid as it was filled out by someone with a head injury?

Hmmm.

Anyway, my headaches and dizziness persisted and I developed a huge black eye even though I didn't hit it so I asked to have an appointment at the Urgent Care clinic on Friday, just to be sure everything was okay.

At Urgent Care, the doctor (who was super nice and helpful) said I have Post Concussion Syndrome and told me to rest and come back the following Tuesday (2/9) to have my stitches out and see how I was doing.

Oh, and to stay home until I came back.

Over the weekend, I was due for my second dose of increased methotrexate.

I knew it was going to be a beast with the concussion and it did not disappoint.

The chemo coma lasted for many hours, it brought nausea and vomiting, and the fatigue was phenomenal.

But it had to be done or the RA would be running wild this week too.

So, Monday, work called again, this time to ask if I would be coming in Tuesday night.

When I told them I hadn't seen the doctor yet, the reply was, "Well, you know they are going to leave it up to you."

Wow.

When I did see the doctor, they removed my stitches and determined that the Post Concussion Syndrome is still with me in the form of headaches, low stamina, and brain fog at times.

They added a huge 12 Day Prednisone Taper (Eat All The Food!) and wrote me off for another week (because, no, they didn't "leave it up to me").

I'm sure my employer is really upset but I am choosing not to worry about it.

I am confident that the Lord is control of this situation and I know there is nothing I can do about it other than focus on getting well.

On a not-so-fun side note, due to the chemo increase, I had a major hair shed this morning. :(

I'm hoping that is a one time thing.

However, if it's not, y'all can just all know that this hair WILL be mine if I have to start buying it from the store:

I'm just saying. :)

Be safe, be well, and have a fabulous Valentine's Day Weekend, everyone!

37

So, this is my birthday week.

It hasn't exactly gone according to plan thus far due to some pneumonia and an RA flair in my dominant hand.

Boo. Hiss. Grr.

Still, a total of 6 shots plus a bunch of oral meds, a few unplanned days off, and a crazy splint for my bum thumb and I am thankfully now on the mend.

And I got some fabulous new hair yesterday:

And it's getting some color work tomorrow morning when I get off of work (for my birthday!) that I am so so stoked about.

More important - yes, even than hairapy :) - is looking forward to a great 38th year.

I really wanted to move my little blog away from writing about my illness - only because I get so tired of dealing with it sometimes and it does not define who I am - but, with the past few weeks bringing plenty of complications of it, there are a few things that are really on my heart: 

 First, it's that it has taught me to slow down and it has given me the time - even when it's time I didn't always want to take - to immerse myself in the Word and books and learning and growing.

And that is a gift.

I've just finished two wonderful books:

First, as I wrote about a few weeks ago, I read Simply Jesus:

And I recommend highly. 

The translation was a new one to me but it reads so well and has wonderful notes with all kinds of  interesting information I did not know.

It is so worthwhile.

Then I read another book called If You Find This Letter, which I also really enjoyed.

Now it's on to the new Jen Hatmaker book and I am very excited about this one!

So sometimes being forced to slow down isn't a bad thing.

Second, I am learning more everyday to just trust God. It sounds simplistic but it isn't.

While we never really control our all of our circumstances, dealing with a chronic illness and a body that does whatever it wants to really teaches a person to do all that they can to make it better but -  beyond that - to pray and lean on God and give it to Him.

He is Good and we can trust Him.

As such, my verse for this year:

And, finally, I've learned that all of this unpleasant stuff can be used for good to help other people when they walk through the same thing.

I saw this from Rick Warren some time ago and it resonated with me:

When I saw it, years ago, I was thinking in the context of God using our past mistakes and spiritual struggles to help others, if we are willing to share them.

And that is totally true.

However, from where I sit now, I also see that it means God using this illness and the struggles that often come with it - because it can be, and often is, a very deep hurt - to shine a light for other people who need to know that they are not alone in the battles they are fighting.

Autoimmune disease sucks.

Cancer sucks.

Diabetes sucks.

In this broken world, there are so many struggles and hurts and, often, when there is not a medical answer, we all just need to know that we are loved and heard and understood.

Maybe that is the gift of my illness.

I can't fix these awful things but I can love my people through them:

Bringing hope is the best gift sometimes.

And, now I'm off to start my birthday weekend.

37, here I come!

I love birthdays and I hope to see another 60 of them.

I still have lots of moments to share with my family and friends and stuff to do and people to love on and patients to take care and rescue dogs to raise. :)

And happy snow weekend to all of my fellow Southerners!

Let's all go eat our milk sandwiches and try not to freeze:

 Stay warm and be well, everybody.

My Brother's Keeper

With the new year, I've been thinking a lot on what is most important for 2016.

Like everybody else, I would love to get in better shape, pay off debt, be 10,000 more organized than I am now, etc.

But that isn't what I mean.

What is MOST important?

And what I kept coming to back to was focusing on loving God and loving my people with all my heart and all my energy.

I am often guilty of getting bogged down in stress and worry and even in guilt over not being able to do as much as I would like to because of my health.

I realize now that to serve God and my people, they aren't needing me up and ready to go mountain climbing.

They just need me, present and attentive.

As I've been thinking, I am also studying the Torah and came across the familiar passage about Cain and Abel, with Cain denying responsibility for his brother, saying, "Am I my brother's keeper?"

 And the answer is "Yes."

In our selfish society, where it is often every man for himself, I am my brother's keeper. That is what God has put us here for: to serve Him by loving each other deeply and well. Apart from that, our lives are empty, wasted, worthless.

As I had been thinking on those things, the newsletter came from Hueytown First United Methodist Church and, on the front, was a lovely passage written by Pastor Dean:

This year, I pray that I can be a sanctuary for God and others.

And, already, some of my people are facing challenges that I cannot wrap my head around yet:

A dear friend from my home church and high school has learned that her husband and her son have cancer. I cannot begin to understand how overwhelmed she is feeling now. And I don't know what to do.

But I do know Who to go to.

Please join me in prayer for the Granberry family. They are walking through a very difficult season.

And let's all go and love our people well this week and always.

Real Talk From A Plague-ish, Tired, If-These-Kids-Don't-Go-Back-To-School-NOW-I'm-Running-Away Mom

Y'all, I try to keep my little blog upbeat.

And write about bible studies and books and ideas and good good things.

But today I am just toast.

Crispy, set off the smoke detector, burnt toast.

See, for starters, our houseful of teenagers have been out of school for almost three weeks now for Christmas break.

Three. Weeks.

Three weeks spent arguing, asking questions, making messes, making noise, tearing through groceries, tearing up the house, and generally doing all the things that teenagers with no schedule for three weeks do to make their parents want to abandon everything, grab the pets, and move to Guam with only the clothes on their backs.

Then my husband and I both got sick. Snotty, achy, nasty, groddy sick.

We are miserable.

Then I worked last night, came home this morning, started a Medrol dosepak for my body pain because my plague is aggravating my RA, and, with the monster dose of steroids, I have been awake all day.

So for about 30 hours now.

With the plague and the too-much-free-time teenagers.

Then I ran to Dollar General, got a flat tire, and my sick husband had to come rescue me - on foot because his car wouldn't start - and change it in the dark in 30 degree weather. 

And then we got home to all three teenagers each separately inquiring about going to the mall tomorrow because "it's their last day out of school."

I am so serious.

So, today my blog is not full of happy ideas or books or verses.

Instead, it is full of snot and ouchies and head pain and the sincere hope that my husband and I can get to our bed with our kleenex and our desnotters, put a movie in, and rest quietly before we have to remove any adolescent noggins.

Usually when I feel bad, I really do focus on a specific bible verse that fits the situation and it helps a lot.

Today I am just too blessed brain fuzzied to even come up with one.

All I've got in my pitiful state is a sincere "Help me, Jesus" and the Dory song from Finding Nemo.

I've been hearing it in my head all evening.

But it's going to be alright for Tuesday is coming soon.

We'll be outside the school at 7 AM, waiting.

Until then, just keep swimming, friends. ;)

Numbering Our Days

My favorite translation of this verse is from The Living Bible: Teach us to number our days and recognize how few they are; help us to spend them as we should. - Psalm 90:12

On New Year's Eve, something happened that really brought this home to me and got me thinking.

When I got to work at 11:45 PM, I learned that one of my patients died twenty minutes before I got there.

This patient had been quite ill and was ready to go and be with the Lord but it just struck me that she would not be entering 2016 with us on this side.

And so I have been thinking on this Psalm.

Contrary to how it may seem, it is not morbid or dark to remember that our time is limited.

Rather, it is a way to keep in mind that it is a blessing to be setting goals and making plans for 2016, our lives are a gift, and we are to use our time well.

With that in mind, I looked back through my sermon binder from church for notes from a couple of sermons from Pastor Chris in late August and early September on dealing with stress and managing time.

I'm going to share them here for anyone else who also may need to do some restructuring this year.

From his Running My Race sermon, he said:

- It is better to have less of what doesn't matter and more of what does.

- It is better to live by design, not by default.

- It is better to get the right things done, not more things done.

- We should regularly take inventory to see if we are participating in the right activities, make tough decisions, and focus on what matters most.

- In the big picture, God matters, people matter, and eternity matters.

He also mentioned something that I really need to work on: If you learn to say "no," you'll trade popularity for respect.

The following week, he offered a list of five things he tries to do every day:

1. Prayer

2. Read God's word.

3. Show love to family and friends.

4. Make a difference in someone's life.

5. Take care of myself.

Going in to 2016, I plan to use his list of five things for myself each day and work toward better time management for myself and my family.

There are some activities that probably need to go and also some, like helping at the Dream Center and joining a small group, that I hope to add.

I hope this is helpful to someone else too.

Happy New Year, y'all!