Tuesday, January 4, 2022

Hospital Stay Musings and Advice

For those of us with multiple unusual and/or invisible illnesses, diagnosing a new condition can be difficult. Many times symptoms can be attributed to several of the conditions we already have so it's hard to tell if a given symptom is related to the new problem or a chronic one.

My mom is one example. She has many autoimmune disorders as well as some other life-impacting medical diagnoses, but for the purposes of this blog, I'll include only the most significant ones.

History: A few days before Christmas this year, she started showing symptoms of bronchitis. She gets bronchitis very easily and said it felt like when she's had it before. But because the family was coming over on Christmas, she wanted to be safe. She went to the doctor to get tested for flu and COVID.

COVID was negative, flu was negative, but she was right and was diagnosed with bronchitis. A couple of shots and a few new prescriptions later, my whole family was relieved that she wasn't contagious and that it was something easily treatable.

Fast-forward to two days later... she felt worse and the family was supposed to come the next day. Knowing that COVID rapid tests aren't always accurate, she decided to be tested again, just to be sure it was safe for the family to come over.

She didn't even make it to the doctor, as she almost collapsed getting ready. As she was somewhat unresponsive, I decided to call 911. 

When she arrived at the hospital, they tested her again. She was still negative for COVID, but this time was positive for flu. The bronchitis diagnosis was also confirmed.

That explained her feeling worse but didn't explain how bad off she was before the ER visit. They did a full workup and found out her blood pressure was high and her sodium was low.

This is where some of her chronic conditions first came into play. She has stage 4 kidney disease as well as POTS (Postural Orthostatic Tachycardia Syndrome - a form of dysautonomia). She has battled low sodium for years and was even hospitalized once to figure out why - to no avail. The POTS means her blood pressure is all over the place on a regular basis.

It takes a lot to communicate that to the doctors and nurses. They don't understand that it's okay to not treat her for higher than average blood pressure readings because she's so sensitive to the medicine that could drop her BP to dangerously low levels. They don't understand that her body doesn't respond to the typical treatment for low sodium. 

I know it's human nature to apply a standard treatment first. I also know sometimes patients or family members don't know the medical history well enough to communicate these types of issues. But I simply don't understand why a patient's doctors aren't consulted more when it's a complicated case.

Mom ended up having seizures from the low sodium level. As of today (her 10th day in the hospital), she seems to be doing better. However, her sodium level has a long way to go - and they won't let her go home before both the sodium level and seizure activity gets back to normal.

So... I wanted to share some of what I learned during this hospital stay to hopefully help someone else who is in the same situation.

- Document. Document. Document. 

If you or someone you love has complicated health issues, start documenting (or ask someone to) from the moment you start getting reports from doctors and nurses.

Document... 1 - anything unusual that you are seeing. For example, I didn't know that one strange behavior I noticed was actually a seizure. It would have been so helpful if I had kept a log of anything different she did. 2 - Document anything you need to ask the doctors and any request you made to a nurse or hospital staff. 

Make sure you add dates and times for all of this information. When a hospital stay starts, you think you can remember it all. But the stress of a loved one being sick, doctors and nurses coming and going, and not getting enough sleep yourself, makes the days and everything else blur together.

The advantages of doing this include being able to report accurately to family and friends (dealing with so many doctors makes it hard to keep everything straight). It gives you more information to tell the doctors about things that they don't get to see. But most importantly, it helps you remember to double-check that anything you asked about. Nurses are overwhelmed and it's easy for them to miss something. On the other hand, it's easy to ask about those things...and then because you become overwhelmed, you forget to follow up and make sure it was done.

- Advocate for the patient.

Like I mentioned earlier, nurses are overwhelmed. They mean well and are often extremely nice but they have too much to do. Things get overlooked. Doctors assigned to a case don't have a full picture of the history of a complicated patient. 

Some of the issues I've had to deal with for this visit:

  • I suspect that my mom hasn't gotten all the meds she's supposed to take. I've asked for a list of what they are given her more than once and still haven't gotten it (but I'm still asking). 
  • Mom has now been in here for nine days and hasn't been given a shower. I'm still working on that.
  • Because of a possible injury to mom's shoulder while here, I asked for an x-ray. I had to ask 3 times before she got one.
  • She was extremely uncomfortable due to having an NG (nasogastric) tube. They had to do it because after one seizure she was too out of it to eat or take meds. But when she started feeling better and could swallow okay, they left it in "just in case". I pretty much demanded that they take it out as it was causing her major comfort issues which stressed her out. As you know, stress can make it harder to heal.
  • Ditto for her oxygen cannula, pulse oximeter, and blood pressure cuff. After a certain point, it's obvious that her vitals are doing well, even through events like seizures. All they were doing at the point I asked to have them removed was causing her stress.
- Take breaks.

I'm the only daughter, the one who lives with mom, and the one who has the most flexible schedule. My dad wants to be here, but he is showing signs of dementia and gets confused easily. My younger brother is a nurse and is helpful in interpreting what the doctors say but doesn't have time to help with day-to-day care. My older brothers work regular, 9-5 full-time jobs. Plus, all four men are, um, men. Yes, it's stereotypical to say,  but not one notices all I do about mom's needs and symptoms.

All this means I'm the one who primarily takes charge during a hospital stay. Even when others can come and visit, they can't tell the doctors how she's really doing, as they haven't been here the majority of the time. I need to be here each day until all of her doctors have made rounds, at least. If she's not doing well, I need to be here all of the time.

But even though I technically need to be here all of the time, I know my limits. I can't do that. I have to leave for a few hours (at least) each day and take a good nap in my bed, take a bath, and do a few work-related or personal-related things at home. I know myself well enough to know that it's extremely important for me to be at my best when I'm here, and if I get burned out, it won't happen.

- Keep an ongoing list of things you need to bring to the hospital and have a central place for those items you need to take back home.

As I've been the primary caregiver for hospital stays (some prolonged) with my dad, mom, boyfriend, and daughter, I now know what to bring. Here is a list of things to possibly take with you if you are in my situation.
  • laptop and/or tablet
  • cell phone
  • charger(s) for phones, tablets, and laptops
  • cubes for USB to outlet conversions
  • an extension cord for all of the above
  • paper and pen to take notes
  • drinks and snacks; Mio or something similar if you want to drink the water they provide but want something different sometimes
  • cash (small bills) for vending machines
  • medicines if you plan to spend the night
  • lotion, eye drops, and/or lip balm as hospitals can be dry
  • a jacket or sweater as hospitals can also be cold
  • a small suitcase or bag for going-home clothes for the patient
  • hand sanitizer, as the patient may not be able to wash hands before eating
  • comfort item from home
- A couple of other tips I've found to be helpful. 
  • I brought a backpack initially with what I needed at first. I leave it at the hospital. Then I have a smaller bag to take back and forth for daily needs, like snacks, drinks, or papers I need for work.
  • Keep things like the big cups or other containers to keep extra straws, ketchup, salt, etc in. There have been several times things have happened like there is not nearly enough ketchup for a meal. You might drop a straw If you get extra of anything, save it for those times.
I hope that you are reading this because you think it's interesting and you don't need the advice right now. But if you do become a caregiver for someone who has to stay a few days or more in the hospital, I hope something I've said helps.

Saturday, December 25, 2021

A Diary from the Holidays

December 17... 

I'm sitting at a local church, getting ready to cover a Christmas concert with a well-known Christian artist and I should be really happy. But I'm not. I'm sad. I'm incredibly sad.

What gets to me the most is there's no reason to be sad. It's been 2 1/2 years since I was diagnosed with Bipolar Type 2 and even before I knew I had it, I've had these cycles of depression and hypomania for as long as I can remember (it just took a while to be diagnosed). 

So, in other words, this isn't new. I know that this will eventually go away. I also know there's not much I can do to make it go away... I can just ride it out.

But it truly sucks that it's the worst it's been in a while during the holidays...

December 18 (morning)...

It's my dad's 84th birthday. My family is meeting at a Mexican restaurant and then they are coming back to our house (I live with my parents) to celebrate. 

However, I'm still in a low cycle. It's difficult for me to socialize on my best day - and this is DEFINITELY not my best day. I dread having to hang out with the family as no one understands me and I know I'll be judged for not being social.

December 18 (afternoon)...

"Well, that went swimmingly," she said very sarcastically. 

First, I got there last and so my boyfriend and I sat at the far end of the table. One of my brothers and I have recently had some, um, disagreements on some issues and of course, guess who I ended up sitting nearest to? 

I proceeded to be ignored by my family the majority of the meal.

Normally, that would be a good thing but I felt hurt anyway. They didn't know I was in a low cycle. They didn't know I didn't want to socialize. So when they ignored me, I knew it had nothing to do with giving me grace for feeling bad; it was because they didn't care.

Second, the restaurant was loud. It was full and so there was a lot of people talking plus the music was really loud. I didn't bring my ear protection that I have for concerts so by the end of the meal, my nerves were shot. 

I decided to take care of myself and go out to the car while everyone waited for the check. I told them what was going on so it wouldn't look like I just walked out on them and they looked at me like I was an alien... just when I thought I couldn't feel worse, they were able to make it happen.

My boyfriend and I needed to run a quick errand on the way back to the house, so we were the last to get there. I walked in and found the family - all sitting around the kitchen table. Our kitchen table sits 6; our dining room table can hold as many as 10. They were crowded around the kitchen table - leaving no room for my boyfriend and me. 

They knew we were coming. They knew the reason I needed to get out of there had nothing to do with them but was because it was loud in the restaurant. They didn't know that I was in a low cycle. But they excluded us anyway.

Talk about feeling bad! So, my boyfriend and I sat by ourselves at the dining room table and had some cake. The family didn't talk to me except to say goodbye when they left.

December 19...

It was a better day in some ways. I visited the church of some friends I had last seen about 35 years ago, when I practically lived with them. Lately we had gotten back in touch through Facebook but had put off actually seeing each other. It was a fun time, though it still had some tough moments because I am still low.

I had been looking forward to this evening for a few weeks. After consulting with my daughter and her fiance', I got tickets to see "It's a Wonderful Life" at the Alabama Theatre for tonight. I made sure their schedule was open, only to find out yesterday that they had ended up making plans to go out of town today.

So, I had 2 tickets that at this late time I couldn't find someone to give them to. Everyone already had plans. I even tried to give away my ticket too so my boyfriend could go with some of his guys friends (plus, I was so down I didn't know if I'd enjoy it). 

I had originally wanted my parents to go, knowing how much they would like going. I offered them to them again and they said they would go.

The logistics of getting them there where they wouldn't have to wait in line and we could get a few of the limited handicapped seats in a general admission scenario was a nightmare. But we figured it out and did it.

I'm glad I went because it was the only Christmas-y thing I think I'll do this year outside of family stuff. However, I was so tired from the depression that I kept falling asleep during the movie. It was still worth all of the hassle.

December 20-23...

From all indications, this week was supposed to be really slow with work. I had some things I had planned to do personally instead.

I'm both thankful and a little upset that I was slammed with work all week. I'm thankful because when you freelance, you never know what work you are going to get so it's always good to get jobs.

I'm upset because I was really hoping for a break. Between the two, though, I'm glad I got the work. It just made this week really hectic.

There was a big bump in the road on the 22nd. My mom felt horrible and seriously thought she had COVID. She went to get tested for both flu and COVID and both were negative. We were thankful it was "just" bronchitis. Antibiotics, steroids, and rest meant maybe we could still celebrate Christmas like we had planned.

The 23rd wasn't great for her and she started to doubt she'd feel up to having everyone over. But we still had another day to make the decision.

December 24... 

Christmas Eve. I didn't feel like it was, feeling absolutely no "holiday spirit." 

I knew mom would need help today with cooking etc, and I planned to help her. But my boyfriend was off work and he was going to come over, so I hoped to spend some time with him. We also had planned to go see a long-anticipated movie being released today and exchanging gifts with my daughter and her fiance'. 

All that changed mid-morning.

Mom felt much worse, instead of better. What was the scariest was that she had lost all taste. We did some research and found that rapid COVID tests are only about 85% accurate so she planned to go back to an urgent clinic to get re-tested before having the family come over. 

I thought she and my dad had already left when I got a phone call that they needed my help. My dad couldn't find something and they asked me to look for it. My mom was so weak she couldn't get dressed, which was the reason they hadn't already left.

In the course of maybe 10 minutes of me finding what she needed and starting to help her get dressed, she crashed. She couldn't hold her head up; her arms were numb; and she could barely talk. I finally called 911.

They took her to the ER and after doing lots of tests, found out she had the flu, Type A, as well as the bronchitis. They were planning to release her after giving her Tamaflu until they noticed her sodium level.

My mom has major issues with her sodium levels. She has been in the hospital before for a week at a time to try to fix it. But this time it was lower than even her bottom and they admitted her.

So, Christmas Eve was spent trying to update people and help her as much as I could from home (as they only allowed one person and my dad was already there). I tried to watch a movie with my boyfriend but kept getting interrupted with phone calls related to how she was doing. 

Then after finding out they were admitting her and knowing that my dad needed to get home, I went to the hospital. I planned to stay the night if needed, knowing that the hospital was short-staffed due to the holiday and knowing that she couldn't take care of herself. However, her nursing team ended up being great so I only stayed until about 11:15pm. 

Christmas morning I woke up to absolutely nothing Christmas-y. I heard my dad getting ready to go to the hospital. I called my mom to see how she was doing and she said she was worse and had been coughing since 3am (where was that great nursing them then?) I helped my dad gather up the things she needed before he left.

It's not 9:45am. I'm alone. My boyfriend and daughter both wanted to sleep in today and I know friends are doing their own things with their families. It takes me back to all of those years that my daughter was with her dad on Christmas so we had ours early (23rd and 24th). But those years I got mentally prepared for being alone on Christmas Day. This was very last-minute.

But I'm thankful. I don't feel happy, but I'm still very thankful that mom didn't have COVID, that she didn't have a stroke, that she had a good enough nursing team that I felt like I could leave and at least get some sleep last night. I guess I'm also thankful that I have experienced being alone on Christmas. I'm sad, but I'm honestly used to it.

It could have gone very differently and been much worse.

I know this post has been a downer, but I wrote it for two reasons:

- One was to help those who are having less-than-Hallmark holidays know they aren't alone.

- Two to show that you can still find things to be thankful for even when everything seems to be crashing down on you. 

I can't say "Merry Christmas," as I'm a horrible actress and don't like to say something I don't feel. I can, however, say, "I hope YOU have a merry Christmas," but know that if you aren't, it's okay. Whatever junk you are going through will end and one day, I promise. Keep going so you can make it to that day.

Saturday, December 4, 2021

New Year's Resolutions for Addicts

I am the main writer and editor for a newsletter for one of my support groups. Earlier today I emailed the group its 38th edition. When you are the main writer of articles sent to mostly the same group of people every month, sometimes it's difficult to think of a topic.  

However, it came to me pretty easily this month... I realized I've never written about New Year's Resolutions. I pretty much avoid making them myself as when (not if) I stop working on them, I beat myself up for a while.

That said, I don't think they are a bad thing. Staying realistic about how much you can do as well as remembering that life-changing support group that says, "Progress, not perfection," makes attempting them worthwhile.

On a side note, this is the 100th blog I've posted. This is another reason I chose to use the article on New Year's Resolutions for this special post. 

When I started this blog, I couldn't imagine even getting to 25. The idea of writing 100 posts could have easily overwhelmed me.

Like New Year's Resolutions (and sobriety), I decided to take it one post (day) at a time. Sometimes it was easy to find a topic... something would just pour out when I sat down to write. Others I had to work for - both in finding a topic and writing. 

At first, I planned to publish a post a week but I miserably failed at keeping that up. Giving up that expectation, I was then able to relax and write when I had time and when I had a topic I wanted to share.

And now I'm up to 100 posts. Wow. I'm blessed and amazed.

Back to New Year's Resolutions... This is the article I wrote. Note that I took these ideas from other articles and those references are listed at the end.


Every January 1st it always happens… someone brings up New Year’s Resolutions and asks you about the ones you made. As addicts, at least in the area of our addictions, making a resolution doesn’t help stop the behavior. That's part of the definition of being an addict.

But just because we struggle in stopping our addictions doesn’t mean we can’t accomplish other things that contribute to recovery.

When we think about New Year’s Resolutions, we usually think about diet and exercise. Those obviously are good ones to include for general health reasons as well as to help stop the addictive behaviors.

However, there are others that help with recovery that we often don’t think about.

So… here is a list of other thinking-outside-the-box resolution possibilities (or reminders):

- MOST IMPORTANTLY… If you don’t have a sponsor /worked the Steps, make that a priority. 

- Focus on a passion. 

- Give one compliment a day.

- Do random acts of kindness.

- Write down one thing you’re grateful for every night and put it in a jar.

- Clean out your car.

- Call a friend instead of texting.

- Start a new hobby or learn a new language.

- Send handwritten letters and/or thank you notes.

- Donate clothes and items you don’t use.

- Write down your goals.

- Turn on music instead of the TV.

- Ditch one bad habit (one you are likely to succeed in and not directly related to your addiction).

- Take time to appreciate your accomplishments.

- Find someone to mentor.

- Invest in a non-profit, either monetarily or by volunteering.

- Stop beating yourself up over mistakes. Learn from them and move on.

- Make certain places (kitchen table, bedroom, car, etc) “no-phone-zones”

- Deep clean an area in your house or work.

- Walk more.

- Allow yourself five minutes to dwell on a mistake, then move on.

Mostly… if you choose to pick one or more of these resolutions to try, remember our saying…“PROGRESS, NOT PERFECTION."

May 2022 be a great year for you (and for all of us). God bless us, every one.