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!