Nursing Is My Jam

This is my 13th year celebrating National Nurse's Day and it has been a wild, wonderful ride for sure.

After I graduated nursing school, I worked my first year as a nurse at Healthsouth Medical Center, with a phenomenal team of nurses.

It was there that I learned how to start an IV practically with my eyes closed, how to pack a Stage Four pressure ulcer and at least make it out of the room before I vomited, how to give patients news that no nurse wants to give, and how to be a strong nurse, no matter what. (Oh, and never to wear lace underpants with white scrubs. ;)

I also encountered a certain well-known sports medicine physician there, who is one of the rudest human beings I've ever met, and learned that not all doctors are created equal.

As much as I loved working there, staffing changes came when UAB bought out the hospital (thank you, Mr. Scrushy) and it was a better choice for me to begin working as an agency nurse at the end of 2004.

With the agency, I got some incredible experience.

I did long-term assignments in cardiology,  endocrinology,  at the state psychiatric hospital, and at the county hospital, to name a few.

Doing a long term contract at Bryce, the state psychiatric hospital, was great experience and helped me really learn to fend for myself as there was often no back up when things happened.

I remember one night in particular that we had a serious incident and I could not get in touch with the Bryce police to save my life so I had to manage it alone.

However, when I was leaving the next morning, the Bryce police appeared to pull me over for speeding on campus. Grrrr.

By the time I got done asking where the hell they had been a few hours before, they decided a warning was sufficient for my speeding.

After Bryce, I did a year assignment at Cooper Green, the county hospital, when they still had inpatient beds.

That experience was unlike any other.

Often, the staff was entirely unconcerned with assisting agency nurses, I was often overloaded with patients, and supplies were extremely limited to say the least.

Every shift I just had to manage.

The absolute hardest day of my nursing career is burned into my brain:

I went into work, signed up for a double.

I was assigned eight patients, I had no nursing assistant so I would be providing total care, two of them had full blown AIDS, and two of them were actively dying. And one of the patients who was actively dying weighed 368lbs and I had no one to help me with him.

During that 16 hour shift, both of the dying patients did and I had to provide post mortem care, notify their families, and take them to the morgue myself, one of my patients with AIDS kept pulling out his IV, causing blood to go everywhere, and creating a biohazardous mess for me, and another patient kept having seizures.

It was the worst damn day.

But I made it.

And, after I made it through that, I knew I could make through anything.

Another agency stop was a long term pediatrics assignment about ten years ago.

The nurse I worked with, Nicole, taught me everything about peds. Nursing friendships are a strong bond and we remained friends through the years:

As it happens, when hell broke loose a few months ago at my previous job, she needed a night shift nurse and she is now my Director of Nursing.

Such a blessing.

All that experience gave me the strength to provide end of life care for my precious grandmother in March of 2014 and I am so thankful I knew exactly what to do for her to keep her comfortable and that I was able to be with her until the very end.

These days, I work night shift in long term care and I love it.

Some nights are quiet, some are crazy busy. We have lots of hilarious moments and some really hard ones. But it's great.

I can't imagine myself doing anything else.

So, Happy Nurse's Day/Week, Everybody!

Here's to many more!

Say No To The Politics Of Hate

I've been so absolutely disgusted with Donald Trump that I really haven't said much - and I've tried not to think about it any more than I have to - since the Alabama primary.

However, it is clear now that he is the Republican candidate for President of the United States.

Really.

And, most likely, Hillary Clinton will be the Democratic candidate. But we will talk more about that later.

Looking at Trump, I am appalled that we are here. I don't understand how this many people could have voted for such a mean spirited, cold hearted, bigoted, hate mongering, divisive talking head. But, now it must be dealt with.

Let's take a look at what the world is seeing in one of our presidential candidates:

- In 2013, on sexual assault in the military, he tweeted, "26,000 unreported sexual assults in the military - only 238 convictions. What did these geniuses expect when they put men and women together?" Apparentely, Trump believes that women can expect to be raped when they are placed with men. 

- In 1991, speaking about his girlfriend at the time, "You know, it really doesn't matter what (the media) write as long as you've got a young and beautiful piece of ass." We see the value he places on women.

- In 2011, an attorney working for him asked for a break to pump breast milk. He screamed at her, "You're disgusting! You're disgusting!" and left. His new attorney has not denied this. And he wants to be our president.

- In 2015, on Mexican immigrants, "When Mexico sends its people, they're not sending their best. They're sending people that have lots of problems. and they're bringing those problems with us. They're bringing drugs. They're bringing crime. They're rapists." Wow. Just wow.

- In 2016, with his ridiculous ego, "I could stand in the middle of Fifth Avenue and shoot people and I wouldn't lose voters." I'm certain he believes this.

- In 2015, "Donald J. Trump is calling for a complete shutdown of Muslims entering the United States." Of note, he has also mentioned things like using registries. I imagine ISIS is seeing strong growth right now with footage of his antics.

- In 1991, a former employee wrote that he said "laziness is a trait in blacks." In a 1999 interview, Trump admitted that was "probably true." And the KKK is endorsing him. Enough said there.

Oh, and there is this tweet that he later deleted:

There is plenty more where all of this came from but I think you all get my point.

So, after giving it a lot of thought, I've decided that the best option for me is going to be to vote for the Democratic candidate, likely Hillary Clinton.

While I don't agree with many of her positions and she has her own baggage for sure, this time I'm much more concerned with voting against this Trump nightmare.

We cannot be the country of hate, of prejudice, of demeaning.

We do not ban people based on their religion.

We do not create registries.

We are NOT that country.

So, we must each say "NO."

Even if that means voting in a way we would ordinarily not have voted.

I feel there is a much bigger issue at stake in this election.

So I have made up my mind.

Again, I can't believe we are here but here we are.

One of them has to win.

We can't let it be him.

Saying Goodbye to Doctor Wrong

Over the past few months, my Rheumatoid Arthritis has been worsening significantly.

We've had major life stress, that has kept me in a constant state of flare, which means that, in addition to majorly impacting my daily life, joint damage is always occuring.

For those unfamiliar with the disease, RA, left unchecked, is a beast:

It has to be managed aggressively to prevent bad outcomes.

The rheumatologist I've been seeing for the past two years, now and forever to be known as Doctor Wrong, is near retirement and very conservative. He has attempted to manage my disease with Plaquenil and methotrexate (both older drugs) primarily, as well as a handful of other meds for pain and inflammation. Oh, and prednisone. Always with the prednisone.

However, each I see him, he is reluctant to start any of the newer biologics, citing my labs or my insurance or the weather or whatever else has come to mind at that particular visit.

At my visit this past Tuesday, though, we were supposed to start one.

So, even though I had an appointment for a second opinion in June, I went back to him, armed with a list of all that has been happening to me recently, all of my recent ER visits, all of the shifts I've had to cover at work due to my illness, and all of the high dose prednisone tapers I've had to take just to keep walking.

And, of course, the flare was still with me as well.

He came in and asked me what has been going on.

And I brought him up to date:
- My lower spine never stops hurting on at least a 5/10 on the pain scale.
- I've fallen twice in the past month, when my ankles just give way with no warning.
- My knees have gotten so painful and inflamed that sometimes they won't even bend.
- My hands throb, get stiff, won't open things, drop things, and are much larger than they used to be. Oh, and I have the RA nodules too.
- I had a flare in my ribs. That was not fun.
- My hips join in the party some days too.
- The fatigue that comes with this is debilitating at times (I slept until 8 PM tonight involuntarily).

And the symptoms have been persistently worsening.

I was in tears by the time I finished telling him everything, despite trying to keep myself together, because I am so frustrated. It is past time to be aggressively managing this, and, when we aren't doing so, damage is occurring. 

After I finished talking, he rolled over in his chair to look at my knees and I jokingly said, "We're going to have to replace these guys if this keeps up." I was JOKING.

He looked at them, moved them around, and said, in all seriousness, "We're not quite there yet."

And then casually wheeled back to his spot.

I could have hit the floor.

I immediately said, "So, we are starting the injection today, right?"

And he said no, we need more labs and to check insurance. AGAIN.

And then we would start it.

So, in his mind, all the symptoms I've had plus knees that are bad enough to even think in the direction of a replacement at 37 still don't constitute an emergency that requires immediate action to stop this process before I get any worse.

He sent in my refills on my regular meds and I got the hell out of there because I was about to lose it.

In fact, when I got to my car, I did lose it.

With my new rheumatologist appointment not until June, I was freaking out, trying to decide what to do to get some help.

When I got back to Hueytown, I ran into our PCP's office and explained to the referral clerk what had just happened and asked her if there was anything she could do to help me.

While I stood there, snotty and looking like a crazy person I'm sure, she called around and worked some serious magic.

She got me in at UAB on May 10th, as I waiting, which is nothing short of a miracle. Rheumatologist appointments are hard to come by and NEVER come that quickly.

I am so so incredibly thankful.

I am confident that in 10 days I will begin aggressive management of this disease, probably in addition to my Plaquenil and methotrexate, and Doctor Wrong will be a bad memory.

I didn't write this just to vent though.

If I have had this much difficulty getting help, as a nurse who is familiar both with the medication needed and with navigating the healthcare system, I can't imagine how challenging it must be for people who are facing serious illnesses with no medical background.

So, I have a few thoughts for dealing with a bad doctor situation:

First, you don't EVER have to keep seeing a doctor. Whether it's because they don't listen to you or (like me) you've gone for awhile and they refuse to make changes or even if it's something as simple as not getting your calls returned, if the relationship is not working, you need a new doctor.

Second, you may have to try several avenues to get the help you need. I've had to really chase this referral to finally get in at UAB - because our healthcare system isn't terribly pro-patient - but, eventually, you will find what you need. Don't give up. Enlist a nurse or doctor friend to help you. They will likely have some ideas that you may not have thought of.

Lastly, you know your body better than anyone. If you know something is wrong, insist on help. And insist on it right away. Don't worry about being pushy. It's your body and it's the only one you have. Never let someone tell you it's nothing when you know that it isn't.

The more I've thought about Doctor Wrong, the more I wonder if he wasn't as desperate to be aggressive because he views some of the bad things (like knee replacements) as inevitable. For all I know, they may be, but, even so, I will do all I can to be as healthy as I can. And I insist on having a doctor with the same attitude.

And, if knee replacement day does come, I want rainbow colored knee braces, a leopard cane, and a three month supply of sea salt gelato in the freezer.

And I'll push through that too.

Without the help of Doctor Wrong, thank you very much.

 

Writers Write.

It has been been one hellava month around here with ER visits, hospital admissions, crummy rheumatologist appointments, sick kids, days off work. . .

So, tonight, after everyone was settled, I finally sat down to listen to a three hour writing intensive that I have been looking forward to for quite some time.

Three hours of the writing process, suggestions for my blog, recommended book lists, pages of notes, and more information to follow in the online group in the coming weeks.

All a much needed break, and I'm now a happy little word nerd, who is about to head to bed.

However, one of many takeaways from my class is that I will be writing and posting at least two or three times a week from now on, even on busy weeks and even when the posts aren't exactly how I want them to be.

 Even if the writing isn't perfect, writers write. And often. So, here we go.

Be well, and have a great Thursday, everyone!

The Song Remembers When

I may be the only person in the world who can recall the old Trisha Yearwood song from the early 1990's called "The Song Remembers When." It was actually a great song and it popped into my head the other day, when I was reading one of Trisha's FB posts (yes, I still love her) about Prince's sudden passing and realized she is sharing a lot of the distress I've been feeling about it.

I have been surprised by how upset I've been by Prince's death. It has really rattled me, left me feeling a little gutted even.

All of my life, I've been a music lover, both as a listener and singing in choirs and musicals when I was younger, taking seven years of voice and piano, the works. . . To this day, I can still explain most things best in song lyrics.

When it comes to Prince, I love lots of his songs but Purple Rain has been with me since I fell in love with it when I was 13 years old. It resonated with me, it became my dance song, I know every word, and it holds 24 years of good stuff for me. And I just can't believe Prince is really gone now.

Like all of our most favorite songs, the song does remember when.

During my time sitting and thinking about Prince and Purple Rain and all of the songs I love most, I started making a list of my very very favorite songs. 

My thought was a top ten most favorite songs list, kind of a mix tape of my life, songs that all matter to me in some big way, for one reason or another.

Well, I was finally able to narrow it down to 16, but that's as far as I can go. There are none left I'm willing to part with.

Of course, there are my way back loves like Purple Rain and Me and Bobby McGee.

But also several new but equally loved songs like:

- the Miranda Lambert song that was SO amazingly perfect to put on our wedding mix CD we gave as a guest favor. The first time I heard it, I knew it was exactly what I meant to say to my husband.

- the Ben Rector song that just floored me after my first really scary run-in with this autoimmune business.

- the Foo Fighters song that made me pull over my car when I heard it the first time:

One of these days, the ground will drop out from beneath your feet

One of these days, your heart will stop and play it's final beat

One of these days, the clocks will stop and time won't mean a thing
One of these days, their bombs will drop and silence everything.

Unexpected and unsettling from my usually upbeat forever geek crush, Dave Grohl. 

But true.

As an aside, since I have some new readers from Instagram who don't know me personally (and thank you for reading!), I should tell you that my Dave Grohl love runs so deep that our oldest dog is named Dave Grohl - and we didn't even change it when we found out she was actually a girl and just too young to tell when we got her:

Dave Grohl the Puppy and Our Youngest Daughter, Sara

But I digress. =D

So, for my list:

My Ten 16 All Time Favorite Songs (in no actual order)

1. Me and Bobby McGee - Janis Joplin
2. When A Heart Breaks - Ben Rector
3. These Days - Foo Fighters
4. Wild Horses - The Rolling Stones (but The Sundays version is my current favorite)
5. Oklahoma Sky - Miranda Lambert
6. Purple Rain - Prince
7. Desperately Wanting - Better Than Ezra
8. Hallelujah - Jeff Buckley (but the Rufus Wainwright version is much loved too)
9. Mad World - Gary Jules
10. The Man Who Sold The World - David Bowie/Nirvana. I love, love, love Nirvana's Unplugged version of this song but there will never be another Bowie either.
11. Milwaukee - Stephen Kellogg & The Sixers
12. Murder In The City - The Avett Brothers
13. Thunder Road - Bruce Springsteen
14. Vincent (Starry, Starry Night) - Don McLean
15. Waiting for My Real Life To Begin - Colin Hay
16. Give Me Novocaine - Green Day

After I made my little mix tape list, it reminded me of a quote in one of my favorite books, Love Is A Mix Tape by Rob Sheffield: 

I have built my entire life around loving music, and I surround myself with it. I'm always racing to catch up with my next favorite song. But I never stop playing my mixes. Every fan makes them. The times you lived through, the people you shared those times with - nothing brings it all to life like an old mix tape. it does a better job of storing up old memories than actual brain tissue can do. Every mix tape tells a story. Put them together, and they add up to the story of a life.

So far, the story is looking pretty good I say, and I'm looking forward to all the rest.

As it happens, I'm also fond of ink and I got the Kanji symbol for music tattooed on the inside of my left wrist several years ago:

Awhile back, I considered covering it, only because I get tired sometimes of trying to explain it to people when they ask.

I'm glad I didn't now though.

Now. it looks like seven years of voice and piano with my sweet grandmother driving me there until I was old enough to take myself, voice competitions and awards, learning large parts of Les Mis, Cats and Phantom of the Opera, hundreds of concerts attended, dozens of record shows with my dad, 16 favorite songs, and the ongoing search for the next addition to the list.

All good good things.

All my heart.

Rest easy, Prince.

Thank you for the music.

You will be missed but know that we are all still listening on.

A View From The Psych Pod

Our oldest daughter, Laura, is diagnosed with bipolar disorder and has been in the hospital four times over the past few years:

Of course, that is a serious diagnosis, but, honestly, as a parent, her illness had not escalated to a point where I imagined it might change the course of her life.

She is still very young, and it was my hope that, with medication management, things would stabilize after her teen years.  

I guess I was living in denial.

Until a few weeks ago.

Over Spring Break, several high risk behaviors she had been engaging in came to light and we were so upset.

At the same time, her behavior was escalating again.

By Friday, April 1st, we decided she was going to have to go back to the hospital.

Unfortunately, as I was preparing to take her, she took a massive overdose of one of her medications and had to be rushed in by ambulance.

That night was one of the worst of my life.

Her vitals were all over the place. At one point, we couldn't wake her up. It was just horrible. . .

When she finally recovered from the overdose, there was not an adolescent psych bed available anywhere in the state, so we spent the whole weekend locked in the psych pod of the Children's Hospital ED:

We were there from Saturday morning until Monday morning, when Laura was transferred to Mountain View in Gadsden.

Since she has been at Mountain View, they have increased her medications tremendously with some success, they have had to give her Thorazine to manage some of her episodes, and I have finally started to accept that Laura is living with an SMI (Serious Mental Illness) Diagnosis that will be a major part of her life.

Because this admission seems to have brought a significant change in her, we are realizing that we have to also make some new plans for her when she is discharged:

- She will not be returning to her school and we are scrambling to figure out what will be best for her now.

- Of course, after a serious suicide attempt, we are having to rethink her schedule (we do not want her to be alone) as well as things she has access to in our home.

- I haven't been happy with her psych team previously. I am hoping to continue care with her psychiatrist through Mountain View and perhaps see a counselor through our church? Since our previous team obviously wasn't working, I'm going to just start over.

- She will not be allowed to associate with her old friend group as she was making some very poor choices with them. This will be a challenge.

- I will be looking in to what additional resources are available to help her. She needs all of the support she can get.

I worked as a psych nurse for quite some time and I'm familiar with the meds and the behaviors and even the progression of the illness if it isn't controlled but it's been a major adjustment to accept that these things apply to my Laura.

She seems to have rapid cycling bipolar which is the most difficult to treat because this is their typical day:

It also makes it challenging to live with them, as their moods are constantly changing from one extreme to another.

I am hopeful that the med adjustments that are being made in the hospital will help her as they have more than doubled her mood stabilizer.

They have also tripled her antidepressant which will hopefully prevent another April 1st from EVER happening again.

So now we wait and plan and search for help and pray and pray and pray.

Be well, friends.

A Painful Season

The past several weeks have been the worst I have experienced since I was diagnosed with RA.

It started with a flare that just kept worsening and finally led to an ER visit last Friday where they hit me with the garbage truck full of steroids (of course) and also discovered an electrolyte imbalance that had to be treated.

Oh yay! 

I really thought treating the imbalance along with all the IV and oral steroids would knock out the flare but it came roaring back this week.

I went in for shots on Thursday and, though they helped some, they didn't give the relief they usually do.

In the middle of that, I've been fighting off a regular people sickness and I'm sure that isn't helping.

Like most chronic illness patients, I don't want to be a broken record so I try not to complain all the time but this is THE worst pain, fatigue, and stiffness I've had.

In addition to making me miserable, it's frustrating the hell out of those around me and who can blame them. No one should have to put up with this.

All that said, I found myself feeling despondent this evening. It's overwhelming at times.

But I've taken some time to pray and read and think about what to do next.

For starters, I think it is time to insist on a second opinion with my rheumatologist. He is wonderful but he is very conservative and tends to rely on older methods. That's fine but, at this point, I want to exhaust EVERYTHING before I accept that this level of flare is just something I'm going to have to live with. I'm going to ask to be sent to UAB on Monday.

I'm also going to add my elliptical and yoga back into my daily plans even when I'm flaring to help control my stress level. It has been a tearful several weeks as well and I'm sure that isn't making this any better.

Finally, now that I have my plans set for Monday to deal with doctors, I am going to enjoy a beautiful Easter with my family.

I am so glad it is here!

Have a Happy Easter, everybody!