Things We Cannot Change

Mumford & Sons

On Instagram, there is a community of autoimmune fighters, all women, who have bonded over daily struggles and cheer each other on and provide support for one another through the things that healthy people sometimes aren't able to understand.

Though we will likely never meet face to face, I am thankful for these ladies. I pray for them and count them as friends.

One friend is a fellow nurse who is a few years younger than I am. She is engaged and has two adorable fur babies.

Unfortunately, she has been horribly sick, staying in the hospital for months at a time, fighting multiple infections along the way, and all meds have failed.

Yesterday, my heart was broken for her when I learned that she has entered hospice care at 35 years old.

I realize, given her health status, that this is the best option for her, but it just kills me that there is nothing more that can be done.

When I learned this, I had just picked up a new insanely expensive medicine in addition to a bunch of my monthly meds at the pharmacy.

I was not happy.

Sometimes it's hard not to be resentful that making healthcare "affordable" for somebody out there has also made it a Herculean task to get all the meds needed to keep me alive and functioning.

After learning the news about my friend though, I just took a moment of pause and thanked the Lord for my wonderful husband providing our insurance, for always being able to get the meds somehow, and that they are working to some degree, even if we haven't gotten to the place we want to be yet.

As I think about my friend, I can't help but remember that she has gone from planning her wedding to planning her memorial service within a year.

I'm not being morbid. It's just reality.

So, as Psalm 90 says, we should number our days and remember how few they are.

Get busy doing life.

Love God and love people.

Write the book.

Take up painting.

Get the ink.

Help everybody you can along the way.

Do the triathlon.

Go back to school.

Whatever it is that has been calling your name forever, the thing you just really need to do, do it.

And don't give a damn what anybody thinks.

The ones who really matter will be cheering the loudest.

Have a happy weekend, y'all. Be blessed. Be well.

Love you, Lyla.

At Long Last, The Meeting With Dr. T

Yesterday morning, I finally had my appointment at UAB with my new rheumatologist, Dr. Trojanowski.

 I met with him and his fellow, Dr. Neely, and they spent about an hour with me.

If you aren't familiar with what a fellowship is, after a doctor has completed their residency and practiced on their own for awhile, they may choose to do a fellowship for two years in a specialty that they want to become board certified in.

Both Dr. T and Dr. Neely were really approachable, great listeners, and excellent when it comes to explaining their thought process and discussing our options. I felt very comfortable with them.

After taking a through history and examining me, we discussed the treatment plan I have been under, and it seems that several parts of it have been doing more harm than good.

Over the next few months, we will be working towards coming off of the prednisone (Thank God!) and some other meds as well.

We will be keeping the Plaquenil (so I'll never get Malaria - hehehehe) and have increased the Methotrexate (the chemo drug) to the maximum dosage and changed it to an injection that I will give myself once a week.

Changing over to the injection will allow me to get all of the medication (instead of losing 30% of it in the GI tract) and also hopefully reduce some of the GI side effects.

To decide which biologic to add, some additional testing was needed.

Where my previous rheumatologist never did any xrays, Dr. T did 30 at this visit, in addition to drawing 13 vials of blood for labs.

I will go back in three weeks and, based on all these results, learn if we will be adding another injection or an infusion.

I am much more comfortable with Dr. T managing my care and I am confident that we will find the best course of treatment.

For now, I have just given myself my first Methotrexate injection and am beginning to experience the chemo sleepies so it is nap and blankie time for me.

Here's hoping today's side effects are minimal!

Happy Wednesday, y'all!

New Things

I've had several things I've been meaning to do and just never seem to get started on and I've decided there is no time like the present.

Since I should be starting a new treatment plan with my new rheumatologist tomorrow, I'm going to restart a brown rice and veggies diet this afternoon - after I enjoy Mother's Day lunch with my mom. I think it will help and I'll never know if I don't try it.

I'm also going to alternate days between Level One Yoga Meltdown and our elliptical machine for exercise at home:

I think it will help my joints and I know it will help my stress.

But the thing I'm most excited about is this guy:

His name is Bob (as in Marley) and I lub him.

My amazing husband gave me him and a  beautiful guitar as gifts and I plan to learn to play them both. (I also think it's another thing that will keep dexterity in my lil' RA hands as an added bonus.)

Last night, I got Bob down from his stand, tuned him, and started a Pinterest board of Ukelele chords and tutorials and the like.

As I was pinning, what should appear but this guy:

And I was so stinkin' excited. I decided it was a sign from the Lord that it is, indeed, time for me to learn to play Bob. =D

Needless to say, Bob and I can now play and sing Three Little Birds (badly). ;)

Learning a new instrument always sounds terrible for awhile BUT I'm having fun and getting started on my new things and that's what matters.

All prayers, good vibes, and warm fuzzies for tomorrow's appointment are greatly appreciated. It is so important that it go well.

I'm going to do my part to do everything I can to help myself. I'm just praying this doctor wants to work as a team and really listen and do his part as well.

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.