Sunday, September 25, 2022

Seven Days and Counting... Planning a Wedding with Mental Illness

In hindsight, I should have been writing about this journey all along. But in hindsight, there's SO much I wish I had done differently.

It's September 25, 2022... seven days, only ONE week, before my wedding - the wedding I started planning back in late March of this past year, soooooo about six months ago (about 180 days and 24 weeks). 

When I started, it was all fun. I had a blast making my wedding unique. Basically, I took all of the parts of a wedding, researched the traditional way each is done, and then found an alternate way to accomplish the same thing.

There are all kinds of quirky aspects of my wedding - things I'm proud of thinking of:

- We couldn't find a wedding topper that represented us, so we found Lego photographers.

- Instead of a fancy, traditional wedding cake, we are building one with Little Debbie snack cakes.

- My fiance' absolutely loves baseball so we're making a special small Little Debbie cake to put on our table at the reception, complete with a Lego baseball player for our Lego selves to photograph and various Lego people (including superheroes) to be in the stands.

- I have a suit of armor who was going to be a prominent part of the reception when it was going to be held at our house (more on that later), so the main wedding cake, the Little Debbie cake I mentioned earlier, is going to be in the shape of a castle... complete with a moat made with a mixture of sanding sugar and sprinkles... AND a moat monster (Randall from Monsters, Inc).

- I don't like to wear dresses so I'm wearing a tunic with leggings... and an incredibly sparkly long veil and rhinestone-covered tennis shoes.

- My fiance' and I are becoming fluent in sign language so we are going to sign parts of the wedding and one of the decorations is a set of wooden hands that have joints - we are making them each have the hand shape that says, "I love you."

- Instead of a ringbearer, my daughter's fiance's emotional support animal will carry the rings up the aisle. When it's time to give them to the officiant, the plan is for her to say "Shake," and he'll hold up his paw with the rings tied on it for her to take.

- Sand ceremonies are becoming more traditional so that's not too unusual, but we are including a blend of four colors to represent our parents, white sand to represent God, and we are including my daughter and her fiance' with their own colors. We are also putting the sand in a shadow-box frame and on special occasions, we are going to turn it one rotation - so that the sand gradually being blended shows how our lives are becoming more enmeshed.

- Our flower girl is going to push a cart that holds the sand ceremony stuff... and on the cart will be a sign I made that says, "Though I'm undeniably adorable, wait until you see the Bride."

There are so many other touches that I'm doing that will make this wedding unique - and ours.

But though all the planning was fun at first, my and my loved ones' mental illnesses and physical issues have come into play over and over throughout the process.

- It's not directly related (pun intended) to my mental/physical issues, but family has been a big factor in adding stress, which makes those issues worse. Originally, I had planned to have the wedding and reception at home with only a few people attending in person. We decided this somewhat for financial reasons but due to my social anxiety disorder - I don't like crowds. We were planning to Livestream it for those who are out of town. 

Then my family started taking over and telling me how to do my wedding. To combat that, we decided to move it to a neutral venue... one we could control easier. It didn't eliminate the stress my family continues to pile on concerning the wedding, but it helped.

- My daughter is not doing well right now - physically or mentally. I really wanted her to be much more involved than she can be. I understand what's going on but it's still disappointing.

However, because I know that some days she does well and others she doesn't, I have backup plans for all of her parts of the wedding, just in case she's having a bad day. I also changed some things I originally wanted to do to give her more time to rest in between all of the wedding activities.

- I have a similar issue to my daughter's... I also have good days and bad days physically and emotionally, though not as extreme or life-altering as hers.

Similar to the strategy to help her, I've been working since the beginning of the planning to get as much done up front as possible, so I'm not having to go sunup to sundown every day this last week. I'm still nervous that I'll overdo it so I'm making a conscious effort to try to rest some everyday.

There is a lot more that I could share, but I honestly do still have a lot to do. If I think about anything else, I'll either add it to this post or will do another one AFTER the honeymoon.

One last thing I need to say, though. At the top of my master to-do list, I wrote:

REMINDER FOR TRACY - and anyone else who might need to know: 
    IF SOMETHING GOES WRONG, JUST PICK UP AND KEEP GOING.
        PERFECTION AND FORMALITY ARE NOT THE GOALS…
            HAVING FUN AND SHARING LOVE ARE

As a perfectionist with a lot of OCD traits, this is very difficult to do. However, I know how important it is to remember. If I worry about perfection, there will be no way to be in the moment and enjoy what a great time this is.

Like we say in addiction support groups... It's "Progress Not Perfection."




Friday, September 23, 2022

Navigating a Professional Conference with Mental and Physical Issues

 Any time I leave home to go somewhere overnight, there are so many questions...

- What will it be like where I'm staying?

- Will I be on the first floor/is there an elevator?

- Will the bed be too firm for me to be able to sleep? Will it be too soft?

- What will the weather be like?

- Is the water filtered?

- What will the meals consist of? Will I have choices or have to eat whatever is provided?

- What kind of seating is provided? (Tiny seats like wedding chairs don't work for someone like me.)

- How will I get there?

If you've been a part of my blog for any time, you know that all of these issues aren't just because I'm a diva. Though not necessary, these legitimate questions and answers make a big difference in how well I do while I'm gone.

Earlier this spring I attended a conference for professional communicators in a city about five hours from my home. It was a big deal to get invited to go as a freelancer and I was excited about not only learning from some great speakers but also getting away for a few days.

However, there was a wrench in the plan. My dad went into the hospital the Wednesday before I had to leave on Monday. My mom had recently had surgery on her hand and was still very dependent on the help of others - mostly from my dad, actually. I had no idea what to do.

After talking to my mom and to my now-fiance, I decided to go but to drive myself in case I needed to come home early. 

Maybe it was the stress of making the decision, helping to take care of my mom, other work issues, a physical illness that made me more fatigued and nauseated than usual, or just the way my brain works, but I entered a bipolar low mood cycle (i.e. depression) right before I left home. 

When there was a lecture that was really exciting, I could push through to attend and even engage with what was going on.

But I quickly found out that the only way I could do that was if I took a lot of breaks.

I'm the kind of person who gets to a professional conference and wants to learn everything I can - not one who skips the workshops and heads to the local attractions or goes shopping at a nearby mall. So it was really difficult for me to miss any of the sessions... but I did.

Before all of the therapy and learning about my physical and mental issues - and realizing that it was okay to not be "on" every second of every day, I would have pushed it to attend 

every... 

single....... 

one................ 

of......................... 

the............................. 

professional........................ 

and............................................ 

fun.................................................. 

activities (WHEW! That was hard!)

But pushing myself to make the most of the time there would have been miserable. (It was bad enough even with the breaks I allowed myself to take.)

The first night we were there, I did okay through the few first-day sessions. But when it came time to eat supper, I knew all of my "spoons" were used up. (If you don't understand that reference, go to https://theswaddle.com/what-the-spoon-theory-means-for-people-living-with-chronic-illnesses-disabilities/#:~:text=The%20metaphor%20uses%20spoons%20to,to%20get%20through%20the%20day )

Again, before I learned it is as important to rest when I need it as it is to be productive, I would have pushed it and gone out to eat with my work buddies. I wanted to go since they are a fun group of people and we were planning to eat in the French Quarter of New Orleans, something I've never done before.

But instead, I made the difficult, though smart, decision to stay in my room and order Chinese take-out. 

And now, months later, though it would have been nice to have the energy to go with them, I have no doubt it was the right decision.

Another thing I did was walk out of a workshop that was good, but wasn't directly related to what I do. Keep in mind, my social anxiety makes it almost impossible to walk out. But I was trying to have discernment on which classes were the most impactful to what I do - and leaving one that I realized wasn't in that category gave me enough spoons to make it to those that were.

It's taken a while but I finally feel that I am starting to recognize my limits and put that information to good use. I might not be able to do as much as I could years ago - before the plethora of mental and physical illnesses started invading my life - but I can still do a lot.

I guess that old saying, "Work smarter, not harder," applies to not only work... it applies to the lives of those of us with these issues.

Take care of yourself. Take breaks. Do what you need to do and take breaks as needed so that you can, at least sometimes, have the energy to do what you want to do.



Monday, September 12, 2022

Engagement, Surgery, and World Games - Oh, My! (Surgery and its Impact on The World Games)

So... the busy-ness hasn't stopped. I'm writing this much later than planned but I feel it's important to share.

Today is September 7, 2022 and I'm writing this while in the waiting room as my dad is having a stint put in his heart. It's 25 days until the wedding. As of this point, I'm surviving. However, this post is about my surgeries and how they impacted The World Games - as well as how my ongoing issues affected it.

First - my carpal tunnel surgery...

As I mentioned in the last post, it took a lot longer to heal than I thought it would. When I scheduled the surgery, I knew that I would still be weight restricted (lifting no more than 5 pounds). I got home that day and immediately looked up how much my cameras weigh. 

I wasn't surprised that my camera with the long lens is over the weight limit. It was about 5 lbs, 4 oz total weight. I thought about how I hold my camera and assumed, without testing it, that the bulk of the weight was on my right (dominant) hand.

Mistake! Even though I pick up my camera with my right hand, I rest it on my left hand when I shoot.

Okay... so now let's talk about my regular mental health issues and invisible illnesses/other health issues - and how they impacted The Games.

I hate crowds (part of my social anxiety disorder). In most instances, this wasn't a big deal because the photographers could be on the floor for most events... and there weren't many photographers attending.

However, it was different the times I had to ride the buses from the parking areas to the venues. Not only did I not want to be in the middle of the very full vehicles, but I had a lot of equipment to carry (with one hand) in addition. Between my size, my social anxiety, and my equipment, I almost panicked each time I started to get on and saw that it was full.

It just so happened that each time, I was able to sit in the front, either because of nice people moving for me or luck. But it didn't help the ongoing anxiety... because what if the next time it didn't work out that way?

Of course, neurotypical people would simply be thankful for the seat they got and wouldn't immediately be concerned for the next time. My brain doesn't work that way. 

Heat intolerance... It was hot. I mean, HOT! One time I had to walk a few blocks to get from the shuttle to the venue and after I got inside, I looked at my phone to see the temperature. The heat index was 110. 

It was one of those times that I literally had to take one step at a time to get to the venue. I made it, but my core temp had increased and so it took a while to cool down.

In addition, I walked into a completely crowded room - full of media and full of spectators. 

THAT was a difficult day, but I made it.

Another problem was that the media was told that there would be snacks and drinks in all of the media centers. Sometimes that was true... sometimes not. Because I was already carrying a lot of equipment and I wasn't 100% due to my recovery, I couldn't add snacks and drinks to my already-very-heavy load. 

Sometimes I would find something somewhere; other times I had to wait until I got back to my car and I could get to a fast-food place. Again, I always made it but there were times I would get weak or start to feel sick because of this issue.

The noise was one more difficulty. At times I can be very sensitive to loud noises. Some of the venues were really loud. However, I carry earplugs with me all the time for those events. Those earplugs saved me more than once during The Games.

Now... back to my recovery from the surgery. The first time I realized that I was holding my camera with my left hand, the anxiety started. Shooting The World Games is a once-in-a-lifetime opportunity for someone like me and I wasn't going to quit...

(Busy-to-the-point-of-going-crazy Tracy inserting that at his point in the post, my dad got out of surgery. Now it's five days later and I'm just now getting back to this. Sigh...)

...but I still had to deal with the anxiety about what I was doing. Would this negate the benefits of the surgery I had? Would I be able to get good shots if I had to worry about holding the weight of my camera in my right hand? Should I take more breaks from shooting, knowing that I wouldn't have another chance to do this big of an event?

What I decided to do was to compromise. I looked at my schedule of events and decided to try to get as many different events in - but only to shoot once at each event. It would have been nice to shoot the same event for qualifiers and finals and I know if I had done so, my images would have been better after "practicing" during the qualifier. 

But I also knew that it wasn't worth the long-term risk of hurting my wrist. 

I ended up with ten straight days of shooting (though one day was an assignment for the paper) and over 10,000 photos taken. I took that incredible number of photos even though I drastically held back from what I had originally planned to do! 

And I survived. 

Was it fun? Yes, most of the time, especially when I was shooting. Would I do it again? Maybe. Would I do it again right after carpal tunnel surgery? Not a chance.

Like so many things in life, it was hard but it was worth it. 

If you find yourself in the middle of something hard, remember...

- take care of yourself,

 - pace yourself,

- and it's not a failure to not accomplish all you wanted but instead focused on what you needed.

To see some of my favorites of those many images I took, go to https://novelphotos.instaproofs.com/gallery/#events/1900477. 



Thursday, August 25, 2022

Engagement, Surgery, and World Games - Oh, My! (Wedding Planning and Jury Duty)

As part of the mental health issues I deal with, I can be a little (ahem!)... a lot obsessive. No, it's not true OCD but sometimes it feels like it. 

Wedding planning was one of those times for me. 

A combination of factors led to a crazy frenzy of wedding planning during the months of April, May, and June:

- Pure, unadulterated excitement... 

I've been wanting to get remarried ever since my divorce was finalized almost 20 years ago. During that time I didn't just run around looking for a husband, but I did pray about it - a LOT. 

When I met my fiance', I knew how great we were for each other, but he had never been married and wasn't sure if he wanted to ever get married. 

The prayers started again in earnest. One thing I learned from my divorce is that God doesn't make someone do something so I knew my fervent prayers wouldn't necessarily lead to an eventual marriage. But I hoped so. 

When it happened, I was more than excited. All I wanted to do every waking minute was work on wedding plans. Those early days of planning were so much fun - other than considering cost, the sky was the limit for fun and unusual ways to celebrate this commitment we were making.

- Upcoming schedule concerns...

Though at the time I got engaged, I wasn't positive I would have to attend jury duty instead of being excused and I didn't know if I would get credentials for The World Games. 

I knew that they could potentially take out entire weeks of potential planning time - not only for the events themselves but for the time it would take to catch up on work and recover, as with some of my physical issues I can't go full-steam like I could when I was younger (unless I'm manic and that also includes recovery after I come down). 

- Upcoming surgery...

I was supposed to have carpal tunnel surgery on both of my hands this past spring. Insurance issues came up and caused me to delay both surgeries. 

Just before The World Games, I had the procedure done on my left hand. I had not anticipated how difficult routine tasks would be, especially typing, with one hand compromised. 

It took longer than expected to heal from that first surgery and in August I had the second one done - on my right hand. This one is healing faster, but because it's my dominant hand, it actually impacted me more.

It's been over two weeks and I'm JUST NOW getting back to where I can work without much pain. (More about the surgeries in an upcoming post.)

So now I'm less than 6 weeks away from the wedding. For once, my obsession worked in my favor. Even though I sometimes felt embarrassed to work so hard on the wedding when, at the time, it was months away, there is no way I could have worked on it with these factors involved. My stress level would have been sky-high if I had to do wedding planning on top of something like The World Games or jury duty when I needed to work. 

I have to smile when I think about it. This wedding is not going to be like any other and some of the qualities I have like hyperfocusing, attention to detail, and wanting to stand out worked in my favor. 

Saturday, July 30, 2022

Engagement, Surgery, and World Games - Oh, My! (The Beginning)

It's been a hot minute since I've posted. I know that many say that if you are a writer, then you need to write no matter what else is going on in your life. 

Not to be mean or crass, but those who say that don't have the life I do (think about walking in someone else's shoes and all that jive). 

Mid-March started a roller coaster ride - one of those with top speeds and extreme drops and twists. 

Have you ever wanted something so much you cried over it, and prayed to receive it, and talked to your best friend about it, and then you couldn't talk to your best friend about it because she had heard it so much, and you saw signs everywhere that it was going to happen... but it still didn't. So you finally gave up. This is how this period of my life began.

In March, the boyfriend I've dated for almost five years (at that point) and who I seriously thought might never want to get married, casually asked during a meal out, "What's your ring size?"

I had a huge rush of mixed thoughts and emotions... Was he serious? What if I misunderstood? Was he simply wanting to buy me jewelry for my upcoming birthday or did it mean more? Should I be excited or hopeful or what? My final emotion was fear; my thought was that I needed to evade the question.

I changed the subject. 

A week or so later (I really SHOULD write down all these things), we were at another restaurant. Again, in the middle of eating, he casually asked, "What's your ring size?" 

I had chalked the earlier encounter up to meaning nothing during the time in between the two dates. This time I had a little more courage. I asked him something like, "Are you asking what I think you're asking?"

He said he was. 

I can't even describe the emotions I felt - elation, joy, hope, fear, anxiety, and many more rolled into one. I think I asked again. It was like the room got quiet and I tried to process his actual question. I remember hearing Randy Travis' "Forever and Ever, Amen." I hadn't heard a word of the restaurant's music before that moment.

I choked out that I had a ring sizer at home and I'd let him know... then we both went back to eating.

That is, we went back to eating for maybe a minute before the real excitement hit. I quickly pulled out my phone and looked up the screenshots of possible engagement rings I thought I would like when we hadn't been dating long and I still had hope that we would get married. 

It took a while to find them as it had been several years since I had taken the screenshots. When I finally found them, I showed them to him and quickly told him that these were like what I wanted (like he was going to run out the minute we parted to buy me one and I wanted to get my opinion in). 

He laughed and took note of what I wanted.

We went back to eating... for a few minutes this time.

I couldn't hold it in - and I was really pretending to eat anyway.

Words exploded from my mouth... descriptive words about how I wanted this and not this in a ring and when was he planning to get this and that I wanted the ring before he officially asked me and who knows what else I included about this development. 

Then I finished with, "Actually, the more I think (and talk and talk) about it, I really don't know what I want, so how can you find it? Is it okay if I find it and let you buy it?"

He said that was fine. (I think he was secretly relieved not to have to try to read my picky mind about something so important.)

But back to speaking of roller coasters, I have got to get going with my day.I feel like I'm finally getting to that stretch of a coaster where it starts to slow down and I think I can catch up on how far behind I am with this blog. I'll pick this story up and hopefully can continue it in a day or two. 

Monday, June 6, 2022

Dealing with Jury Duty with Mental and Physical Issues

Jury duty. Back when I was in another career and was a single mom to boot, I always asked to be released from serving jury duty. It wasn't that I didn't want to serve... it was that it was difficult to find a sub for several days in a row and I had no one to take care of my daughter. It was never an issue to get out of it.

So when I found out I had jury duty as a freelancer, I was torn. Like I said, I had always wanted to serve. It seemed like it would be very interesting to see what goes on in an actual trial (as some of my past obsessive periods concentrated on law shows and books).

However, I knew that a week (or more if I got chosen for a big case) would be extremely rough on my income plus, on the slight chance I was sequestered, it would be difficult for my parents. 

The weeks before I was supposed to serve, I was extremely busy and let making the decision to try to get out of it slip away. Finally, with only a few days left before I had to be there for my first day, I realized it would be better on everyone to see if I could get out of it.

When I didn't receive a release from duty, I thought it was my procrastination that got me to that point. When I arrived, though, I found out that jury trials were still extremely backed up due to COVID-19. No one was released, no matter what the reason, as they needed every jury available.

So I resigned myself to going... only to hit one of the worst manic cycles I've ever experienced the weekend before I was to start on Monday. I got almost no sleep and as my mania usually involves anxiety and not euphoria, needless to say, I was not fit to make major decisions that could affect another's life for years.

I knew from my earlier research about the possibility of asking for a release that major mental or physical issues could cause you to be released so when a judge came in to hear excuses, I got in line.

This judge was extremely kind and told me that, yes, I was right, I wouldn't be fit for jury duty in my present state. He apologized profusely when he said that he couldn't release me, though. The judge in the case had to. He assured me it would happen but not until I got chosen for a trial.

So the wait began.

One article I read said that jury duty was a great thing for freelancers. You are able to work without the constant interruptions of a regular business day. I wanted to make the best of this situation, so I tried to have that attitude.

I had brought my laptop and lots of other work I could do. In theory, there wasn't a lot of difference between waiting to be called and working at home. But in practice, I found out it was very different.

Several factors made it difficult, including a less-than-ideal workspace. I had a vent blowing cold air straight on me. At the point I thought I couldn't stand being cold anymore, I walked around to find another spot with a desk only to find them either occupied or with the same issue.

I'm hot-natured but during this time I was absolutely freezing. I finally asked if I could run to my car and get a rainjacket I had in there for emergencies. Though it didn't provide warmth, it was a windbreaker and was able to deflect some of the air blowing on me.

Another was that I had to constantly listen for my name to be called. I brought earbuds so that I could review the recordings of interviews to find quotes for various articles I needed to finish. I couldn't use the earbuds because I had a big fear of missing my name being called and being embarrassed as they hunted me down.

However, by far the biggest issue was that I was manic... and at the same time exhausted. I know that typical mania means you can go without sleep for days and not be sleepy. My "hypomania" isn't like that. I need much less sleep than normal, but I get tired, sometimes really tired, the next day. 

I usually can't go to sleep when I'm that tired, but the few times I'm in that horrible state, I often take some time off of trying to get work done and I do other things where I'm moving around and focusing on an activity instead of working at my desk. These are times I do some of my best cleaning and organizing.

Obviously, there was nothing to clean or organize in the large jury holding room. I just had to sit and try to stay awake and keep from shivering, while also not being able to accomplish any work tasks.

I...

was...

MISERABLE!

Every second seemed like an hour. They couldn't call me soon enough, as the earlier judge had told me that I could leave after the judge on a case released me. Group after group was called until there were only about enough left for one final jury pool left in the room. Finally, those few people left were called... and I was one of them.

Even though it was almost the end of the business day at this point, I was just ready to get out of there and get to a courtroom. Because of where my desk was (I had been able to find somewhere warmer after so many had left), I was second in line to the courtroom.

Then we were told amazing news! There wasn't time to start the next step in the jury selection process, so we were going to get to go home early. I was especially excited because I had a car inspection that I needed to get done and that gave me time to do it that day. 

I held my backpack and waited as they gave final instructions on where to go the next day and which parking pass to choose depending on which parking deck you had parked in.

I heard these instructions... but then promptly forgot them. Between the lack of sleep, being so cold all day, the anxiety that I felt which didn't allow me to work to pass the time, and the overall stress of the day, I couldn't hold a thought in my head. 

When they dismissed us, I realized I didn't know which parking pass to pick up. I asked the one person in front of me and got the correct one. Then we walked out. The person in front of me headed down the stairs.

I was incredibly confused. I thought we were going to a courtroom - so why did he go down the stairs.

Then I did something that embarrassed me to no end when I realized what I had done... I asked which courtroom we were supposed to go to. I was told that we were dismissed for the day and that we would find out in the morning.

That was one of the lowest points I've ever had directly resulting from my mental illness. I am smart... technically in the gifted category of intelligence. I had a 4.0 GPA with my Master's and I was the top student in both my bachelor's and master's programs. I was a whiz at math in school and won several math tournaments. I pick up new knowledge quickly.

Yet, I couldn't hold simple instructions in my head for even five minutes that afternoon.

I somehow made it to my car before I lost it. I cried and cried. I was so scared that I was losing it completely and that this could be the beginning of some kind of psychotic break. 

I stayed there as car after car wound around the parking deck and left. Finally, I was calm enough and awake enough that I felt it was safe to drive.

The next day I ended up having to stay the entire day but once I told the judge about what was going on with me, I was dismissed and didn't have to come back.

What would I have done differently if I knew then what I know now?

I'm not sure. Though it wouldn't have mattered about being excused before the actual week of duty because no-one was excused, I possibly could have asked more questions when I tried to get out of it.

However, the more I think about it, I don't know what I could have asked. How would know to ask if it was freezing cold in there, or what happened if you were wearing earbuds and your name was called, or if you had bipolar disorder and arrived in a manic state? 

I guess the only takeaway from all this is that even though it was a no-good, very bad, horrible day (and I wish I could have gone to Australia), I made it through. I didn't have the feared psychotic break. I got a little more sleep that night and the next day I knew to get there early enough to find a place away from the dreaded vents. 

In other words, once again that darn serenity prayer came to the rescue. I tried to control those things that I could change but survive through the things I couldn't. 

And like so many other bad memories I have, one day this will fade away and all I'll keep from the experience is that knowledge that I did, in fact, make it... and can do so again if/when needed.

Thursday, March 31, 2022

What If It All Goes Away?

Nothing has changed in the last 24 hours. I haven't had anyone insult my photography or writing, tell lies about my character, or leave my life. Actually, it's been a pretty good day.

No, the change has been in me. I've hit another low cycle. Being in a low cycle has made circumstances that normally would be neutral extremely negative. But I can't blame my low cycle for everything I'm feeling.

I have realized how arrogant I've been over what I've accomplished lately. Yes, I've worked hard. Yes, I've gotten experience through hours and hours of practice. Yes, I've analyzed my work to see how it could be better.

But none of that is how I've gotten to where I am now professionally. It's been God. Some might call it circumstances; some might call it luck; some fate... but I believe in a Higher Power and my Higher Power is God. 

You might be wondering why I titled a post about my arrogance "What If It All Goes Away?" It was one of those realizations that hit me in the head today. I've lost basically everything at different times in my life. Each time God has been with me and provided. 

But each time this life-shattering event has occurred has led to one thing - my pride being exposed. I have always felt I needed to be the best in whatever I did. Second place wasn't good enough. While that provides success in life, it's diametrically opposed to God's plan. 

The only way to really live out His will is to not be looking at my success - it will only be to look to Him. And if it does "all go away," I am finally starting to realize that it will be okay.



Sunday, March 20, 2022

Apps that Help Me Make it Through the Day (Part 2)

I don't know your definition of "later," but my guess is that it's not over four months. Yet, that's how long it's been since I wrote the first part of this post. If you want to read about some of the other apps that help me each day, look for a post with the same title on November 10, 2021.

So... I'm finally getting back to sharing more about this idea. 

On a side note, if you want to read something really ironic, read my post from February 5, 2022. You'll see why almost immediately after checking it out.

Let's go back to the topic at hand (or at a magnetic stand, as that's where my phone is right now.)

GOOGLE CALENDAR...

Like Chrome, I found the wonders of Google Calendar years ago. There have been several times I've tried to switch to something newer and flashier, but I've always gone back to it.

The best part of this calendar for me is that I can divide schedules into who is affected by them. I'm a very visual person and I can also get overwhelmed easily. Putting my daughter's schedule and my schedule and reminders of when things like bills are due and other tasks is too much for me to be able to focus in the next activity, depending on how I'm doing at the moment. 

Let me give an example of how I use Google Calendar:

When my daughter was younger, there were activities she had that I didn't have to be with her (like Colorguard practice after school). So I made three different "calendars" to take care of this issue. One calendar was for activities I wasn't involved in; a second was for items that I did by myself, and another was for those times we were both included. This part of this system had several advantages.

Why did she need one by herself, you might ask? Well, I'll tell you. My daughter has a lot of health issues and goes to the doctor a good bit. I needed to know when she was free when scheduling an appointment. So when I'm scheduling an appointment, I show all of the three calendars I mentioned. However, if I really need to focus on what I'm doing for the next week, I show only my calendar. 

Bills were another calendar. When my anxiety was high, I didn't need to look at all of the upcoming bills, so I would hide that one during those times. 

I now have one for my boyfriend, for those activities he participates in without me - again, so I won't ever accidentally plan something for a time he's already busy. But like with my daughter, I can also hide his when I need to focus purely on my schedule.

The color-coding provided also helps. You can assign each calendar its own color. I would do little tricks to remember categories - like with the three calendar example, my color was blue, my daughter's was red (our favorite colors) and the one for us together was purple. Bills are a yucky green and work activities were a nicer shade but still green to symbolize getting paid for that time. You probably get the idea.

MONDAY.COM...

While Chrome and Google Calendar have been my friends for over a decade, Monday.com is a new kid on the block.

As a freelance writer and photographer (as well as an odd job person), there are many steps in order to complete each project. I have tried making up various spreadsheets, lists, calendars, and other methods to try to tame this beast. Finally, I got tired of it and decided to dedicate a day to looking for a work organizer app.

I tried many that day. I would find one I thought I liked, get the trial version, start loading my info, only to find out it wouldn't work for my situation. Then I happened upon Monday.com. 

Monday.com has a LOT of templates. I had to mess around with it for a bit before I found a template that I could personalize to meet my needs, but so far it's really fitting the bill.

The only way I can easily describe it is that it's like a spreadsheet that has incredible versatility on what is included in each column. There are drop-down menus, fill-in-the-blank, file holders, upcoming date, and status update options. Once you create a work item, the whole row can be moved into various categories; in my case, this means whether I need to do something soon on a project, or everything might be ready to go but I just have to wait, or it's finished but I want to keep the information in case I work with that client again.

I'm probably not explaining it well, but I highly recommend it. It's one that I'm willing to pay for if I have to - it's that important to me - but so far I've been able to do a LOT with the free version. Look it up if you need a program like that. I know it's worth it to at least check it out.

(And by the way, they have a wonderful app for your phone, so you can access where you are on a project on the go).

BANKING APPS (choose your bank)...

Even though banking apps are really common now, even for normies, there is a specific reason I love them... depositing checks. Keeping up with how much is in a certain account is important, but my social anxiety keeps me from getting out many days unless it's necessary. Being able to skip a trip to the bank helps me get back to the comfort of home that much faster.

Okay... this post included an additional three apps that I love. I have a lot more but I won't bore you with all of them. However, I will provide some insight on a few more that help me... later. (LOL!)



Friday, March 4, 2022

Gratitude and Stillness - The International Justice Mission (IJM) and the Problem of Human Trafficking

Yesterday I interviewed a man who works with the International Justice Mission (IJM) in order to write an article based on his work. 

I am always amazed by people who work on the front lines dealing with such horrible atrocities as human trafficking - and their stories.

This man had two which really affected me. 

He gave me the figure that there are 40 million held in some form of slavery today. 2022. That blows me away and seems completely overwhelming.

Sometimes it can also be hard to remember these victims are individuals who have been created in God’s image, not simply a number.

A young man named Godwin is one such individual. Like many others, his family was deceived into sending Godwin into what they thought was a safe environment - where he could get the education he craved and learn a trade.

He ended up being trafficked to Lake Volta to work in their fishing industry. Instead of fulfilling his dream of advanced schooling, he was in a nightmare of 12-14-hour days of hard labor. One of the slaves’ tasks was to dive and untangle nets. Many didn’t know how to swim… drowning was common.

However, Godwin was relentless and clever. He acquired a cell phone and got in touch with an aunt on the outside who was looking for him. She called the local police who connected with IJM. Together, they rescued Godwin.

“A part of what blows me away is that even in the moment of rescue, even as he’s finally experiencing this freedom and release that he didn’t imagine was possible before, he was already saying to the police and IJM folks there, ‘You’ve gotta go back. I know where more kids are. You’ve got to go back,’” the man I interviewed recalled.

After Godwin was safe, he told IJM where the others were. They were also rescued.

This account made me upset at what those boys faced (and others still do) but it gave me chills about how Godwin reacted after reaching safety. 

The other account was how those at IJM start their days. 

He told me that even though they've had great success in rescuing and protecting thousands, it can still be overwhelming with the huge number of those still in need of help. So, every day every IJM employee starts the day by spending time with God for 30 minutes... in stillness. Then they get together as a team, pray together, and remind each other that this is God's work.

I've thought a lot about these two aspects of life. 

I know that when I am in the throes of a pity-party, it's almost impossible to use the old adage, "It could be worse," to help me feel better. While in that state, as embarrassing and humbling as it is to admit, it's difficult (for me, at least) to look past those overwhelming feelings and realize that I can find much to be grateful for even while experiencing struggles. 

I can't help but wonder if that time of stillness with God would make a big difference. Personally, I'm not directly fighting human trafficking. But I do have my own fights, issues where I feel that God wants me to be a voice. 

Maybe even if I'm not part of a huge team fighting the incredibly huge problem of human trafficking, taking the time for stillness and prayer, and reminding myself that what I'm doing in my small way is God's work will help with that gratitude, which will help with every part of life.

And by the way, to help this movement, go to www.IJM.org and click “Get Involved.”

Saturday, February 5, 2022

An Example of Releasing Control

One very common trait of people in general, but especially those who deal with addiction, is the desire for control. The Big Book of Alcoholics Anonymous (AA) describes it well in Chapter 5 - "How It Works, pages 60-62."

"Each person is like an actor who wants to run the whole show; is forever trying to arrange the lights, the ballet, the scenery, and the rest of the players in his own way. If his arrangements would only stay put, if only people would do as he wished, the show would be great. Everybody, including himself, would be pleased. Life would be wonderful. In trying to make these arrangements our actor may sometimes be quite virtuous. He may be kind, considerate, patient, generous; even modest, and self-sacrificing. On the other hand, he may be mean, egotistical, selfish, and dishonest. But, as with most humans, he is more likely to have varied traits.

"What usually happens? The show doesn’t come off very well. He begins to think life doesn’t treat him right. He decides to exert himself more. He becomes, on the next occasion, still more demanding or gracious, as the case may be. Still, the play does not suit him. Admitting he may be somewhat at fault, he is sure that other people are more to blame. He becomes angry, indignant, self-pitying. What is his basic trouble? Is he not really a self-seeker even when trying to be kind? Is he not a victim of the delusion that he can wrest satisfaction and happiness out of this world if he only manages well? Is it not evident to all the rest of the players that these are the things he wants? And do not his actions make each of them wish to retaliate, snatching all they can get out of the show? Is he not, even in his best moments, a producer of confusion rather than harmony?

"Our actor is self-centered—ego-centric, as people like to call it nowadays. He is like the retired businessman who lolls in the Florida sunshine in the winter complaining of the sad state of the nation; the minister who sighs over the sins of the twentieth century; politicians and reformers who are sure all would be Utopia if the rest of the world would only behave; the outlaw safe cracker who thinks society has wronged him; and the alcoholic who has lost all and is locked up. Whatever our protestations, are not most of us concerned with ourselves, our resentments, or our self-pity?

"Selfishness—self-centeredness! That, we think, is the root of our troubles. Driven by a hundred forms of fear, self-delusion, self-seeking, and self-pity, we step on the toes of our fellows and they retaliate. Sometimes they hurt us, seemingly without provocation, but we invariably find that at some time in the past we have made decisions based on self which later placed us in a position to be hurt.

"So our troubles, we think, are basically of our own making. They arise out of ourselves, and the alcoholic [sex addict] is an extreme example of self-will run riot, though he usually doesn’t think so. Above everything, we alcoholics [sex addicts] must be rid of this selfishness. We must, or it kills us! God makes that possible. And there often seems no way of entirely getting rid of self without His aid."

Several times in the years since I recognized that I'm an addict, I have heard the first bolded quote in support groups. Every time it hits me really hard personally. I'm one who LOVES to be in control - even while I fully understand that it's a wrong way to live. The other bolded quotes describe me during the tale I'm about to tell. 

It describes it so perfectly... in other words, life would be so wonderful if everyone and everything would line up to what I want.

This past week I had a big lesson in releasing control. I dropped my phone on tile and, even though it had a shockproof case on it, it hit in such a way that it immediately died. As I am a freelancer and I call my phone my "external brain," it was a huge issue that needed to be resolved asap. 

After researching various phones, I finally decided on the one that was the best balance of performance and cost and got it ordered. At first, I was optimistic about getting a new phone quickly, thinking that the one I ordered would be delivered the next day. 

I looked at my receipt, waiting to see an estimate of when it would arrive. It just said "processing." Since I didn't know what that meant, I called the company to ask for an estimate. 

My stomach dropped as I heard the words that it took a couple of days for processing and 3-5 days to ship it. WHAT?! I would have to go a WEEK without a phone? How would I work? How would I relax? What would I do?

I went into troubleshooting mode, trying to figure out a temporary solution. I knew with enough time and effort I would figure it out and fix this issue. I gathered up old phones I had and asked others if they had old phones I could borrow. For different reasons, nothing worked. 

Racking my brain for other options, I finally realized that a pre-paid phone was the way to go, though not a cheap one. The only place I could find one in a store that was still open was across town, but my boyfriend was willing to go and get it for me. Knowing that sometimes it takes a while to port a number, we activated it together with me using a borrowed phone (not my number) late that evening, fully expecting it to work the next morning. 

Whew! I had made it through the day without my phone and my phone number. I was really proud of myself.

Boy, was I wrong. This next morning, I met my boyfriend at his office to get the phone. When I turned it on, it didn't work. I got home and began the many, many phone calls and online chats to various customer reps about what was going on.

By that evening, I gave up on this phone. There was nothing I could do. Apparently, there was a defect. I returned the phone to the store and got a refund on the service, planning to buy one from a different company.

Because I didn't find a good deal on another phone, had already made it two days without one, and was trying to be optimistic that my new permanent phone would come sooner than promised, I went into Wednesday knowing I wouldn't have a phone at least one more day.

I can't remember how I realized this next issue, but it was even more stomach-dropping... Because I had canceled my service plan the night before, I possibly lost my phone number permanently. I have had this phone number for over 20 years and now run a business with it. I can't even imagine how many hours it would take to inform everyone about a new number and how much business I could lose every day until I had fully switched over.

Spending another day working on this issue, I was able to figure out a solution to hopefully keep my phone number, but I wouldn't know for sure until I activated the new phone. I bought another pre-paid phone to get my account going again as soon as I could. 

Trying to activate it for the first time Wednesday evening, it didn't activate immediately. Again, there was nothing I could do about this part of the process. My stomach had been in knots all week but I was exhausted. Somehow I was able to get to sleep. 

I woke up about 4am, as I often do (though I usually go back to sleep relatively quickly).  My first thought was to check my new phone and see if it had activated. It hadn't. So, I went to my account for the permanent phone to see when it would arrive. 

I almost threw up from anxiety when I saw that the order had been canceled. As the company didn't open until 8am, I had 4 hours to worry about what was going on. Needless to say, I didn't get back to sleep.

Calling at exactly 8am, I then found out that the service with this company wasn't available in my area. Nothing in the ordering process mentioned that it wasn't in my area - or that it was something I should even check on. There was again nothing I could do about this issue... I had to start over researching and buying another permanent phone.

To complicate matters even more, the pre-paid company I was using had issues with both phone and chat in their customer service department on Thursday morning and I couldn't even check into why the second phone wasn't activating. Once AGAIN, there was nothing I could do.

I moved into the mode of finding another service company and another phone. It was a lot harder this time as I had already been burned by several wireless companies over the years and wanted one with inexpensive plans and phones as well as good customer service (a hard thing to find). Finally, something I could control! 

However, I still couldn't control the fact that my pre-paid phone still wasn't activating. I couldn't control that it would now be Monday before I got the permanent phone. I couldn't control if I had, in fact, lost my phone number and would have to deal with the complications of getting a new one. I couldn't control that, because of dealing with this issue, I had lost almost a week of work.

I finally surrendered to the situation (at least partially) Thursday afternoon. I didn't stay on the phone and/or chat (yes, I did both at the same time occasionally because I got different answers about what was wrong from almost every rep I talked to) like I had been doing all week. I still checked into the issue, but I tried to move on and recognize that this issue wouldn't go on forever.

Friday morning I had peace about it. I woke up and checked my phone and, once again, it still wasn't working. I waited patiently for the call center to open up and checked into it again.  Still nothing. However, I was assured that the problem had been found and I would have service by 6pm that night. I was able to do some work that day, with exhaustion from the stress of the past week now affecting me more than anxiety about the future.

At 6pm when the activation still hadn't happened, I called again. This time I got someone who saw the real problem and fixed it. WOO-HOO! I had a phone again... and I got back my original number!

My happiness was short-lived as there was a problem with my service plan. I spent another hour or so on the chat and phone trying to figure it out, finally talking to a supervisor.

This is when I knew I had really surrendered. Instead of arguing with the supervisor about how unfair this ordeal was and how I was still dealing with it, I calmly explained the situation and accepted her solution (though I still don't feel it was fair). 

I have no doubt that this entire week was a lesson in letting go of control. I didn't even go into every problem that I dealt with during a workweek without my phone (things like having one photography assignment I had to get done and still being on the phone with a service rep when I needed to get ready and leave). There were too many coincidences in things happening with the worst timing possible for me not to recognize that it was a chance maybe set-up by my Higher Power, or at least used by my Higher Power, to work on my character defect of having to be in control.

But, even though it took a week of stomach-churning anxiety to get there, I was able to eventually get to the point of surrender (at least this time) and realize a taste of the serenity we are promised if we work the Steps.

Wednesday, February 2, 2022

Two Steps Forward, One Step Back - The Roller Coaster Ride of Mental Illness

(Trigger warning for discussion of suicide.)

It is truly amazing how good one can be doing in progressing in mental health issues, only to have a huge setback. I know what I wrote for the title, but lately, it seems like two steps forward, five steps back.

I have no doubt I've made a lot of progress in the past few years. Since experiencing the lowest time in my life about 6 years ago, I have 1 - become a professional writer and photographer, dreams I had completely given up on; 2 - become semi-fluent at sign language, another dream I had given up on; 3 - been able to be around for my parents who, though still mostly independent, have needed that help several times and honestly, probably wouldn't still be here if I wasn't around; 4 - found a therapist with whom I'm actually making great progress; 5 - realized I'm an addict and am now sober for over three years in one addiction and making slower progress, but still progress, in the other; and 6 - met an incredible man who is my partner in so many ways, who puts up with all of my baggage and truly loves me anyway.

Writing all of that makes me remember just how far I've come. Knowing how far I've come makes me even more discouraged about yesterday.

I haven't been suicidal in a while. In fact, I thought that was one aspect of my mental illnesses that I had conquered. But yesterday I found out that it's not gone... it was just in hiding.

[Note - just as I was writing this, a random background out of 600 or so that cycle on my computer came up: "The devil couldn't take you out so he's trying to wear you out. Don't you dare get tired. Hold on because the tide is turning."]

Apparently, all it takes is an accumulation of really stressful circumstances to bring those thoughts back. Plus, I know exhaustion, both mental and physical, is a part of it (see the previous paragraph). 

On Christmas Eve my mom went in the hospital. What we thought would be a few days there at most turned into 15. Then when she got home she was still weak, confused, and in overall rough shape. My dad, a diabetic who doesn't keep his blood glucose at the right levels in the best of times, ate horribly during the hospital stay and it has affected him badly too. His blood sugar levels are still really high and he's had both physical and mental issues due to it.

While mom was in the hospital, it fell on me to be her primary caregiver, which mostly involved navigating between her many doctors to make sure they each knew what was going on and informing my family what the doctors and test results were saying. It was exhausting physically but even more mentally, trying to keep up with everything and trying to keep my mom fighting all of the issues she kept having.

I thought that when she got home, I could get some rest. I didn't realize how far behind I was with work and personal matters. Even more so, I didn't realize how much she and my dad would need my help at first, which made catching up much more difficult than I thought it would be.

Add to that some big computer issues and it's several weeks later and I'm just now catching up. 

I've been trying to rest but it hasn't come easily. I'm still exhausted, again, both mentally and physically.

When I dropped my phone and it stopped working a couple of days ago, at first I handled it okay. I had been getting ready to go swim because I was already a nervous wreck for some unknown reason and I had to put that plan on hold, knowing the priority was ordering a new phone.

I got online and started shopping for phones, comparing plans, phone prices, and the phones themselves. After a lot of indecision, I finally landed on the one I wanted and ordered it.

Only then did I find out that it could be almost a week before I received it. As a freelancer, I use my phone for more than the basics... it's my lifeline to work opportunities. I asked around to see if anyone had an old phone I could use temporarily and found a few to try. Each one of them had something that kept it from working for my situation.

After realizing that none were going to work, I tried to figure out another way to make it until my new phone came. After a lot of research, I figured out that a pay-as-you-go phone would work. It would be expensive to use for a few days, but I would have one.

The shopping started again - to find a decent phone at a low enough price for me to justify going this route. I found one, only to call the store to verify it was in stock and find out it wasn't. My boyfriend checked at this same store near his house and they had one. So he ran out and bought it for me. We when ahead and activated it that night in case it took a while for my number to transfer.

The next morning, I got up early and met him at work to get it, thinking it should be good to go. 

It wasn't.

I proceeded to both call and message customer service for the phone I bought off and on all day. I'm pretty sure it was at least four calls with long hold times and two or three chats (when I was finally able to connect with them). Every encounter tried a different solution and none worked. It was more than frustrating.

During this time, I also had some computer problems I was trying to fix. The various customer service representatives for the software and hardware companies in question also didn't have the answers I needed.

I finally gave up on the phone and made one last call asking for a refund for the service time I had already bought. I packaged up the phone and took it back to the store. Then I looked for a replacement phone.

This store had very little stock and I had to choose an inferior phone for the same price as the one that didn't work. The monthly service with this phone was more than my original one. However, it had a deal that the first month's service was free, so that made it reasonable.

I got up to the register and found out that there was fine print and you had to commit to a monthly plan to get the free month. Since I only needed it maybe three days by this time, that was crazy. I decided to deal with having no phone rather than pay that much and potentially have the same hassle I had with the first one.

So... two days were spent working on getting some kind of phone only to still have no phone for the next few days. 

In the middle of this was another big issue - trying to find a time that my family could get together for Christmas (since my mom was in the hospital during that time). Every date that was suggested had at least one person who couldn't come. 

Normally that wouldn't be a big deal. But on top of the stress I was already under, it almost broke me.

After one more bad customer service call and another issue with scheduling Christmas, I thought about taking a few handfuls of pills so I could get out of this pressure cooker.

I was able to shake the impulse pretty quickly so I wasn't really in danger. But it happened again when I found out that the phone deal I wanted to use to get a cheap temporary phone wasn't valid. 

Once again, I was able to shake off the impulse quickly.

My point is that I haven't even had those thoughts for a pretty good while now. I assumed that I had made so much progress that those thoughts wouldn't even return. It was discouraging to realize they are still there, under the surface, like an alligator waiting for the best moment to strike.

My fellow stressed-out peers who have had suicidal thoughts - with or without mental illness - be ever vigilant when life becomes especially hard. Ramp up what you have learned about coping and do something, anything, to bring the stress down. Keep supportive people nearby.  

But mostly remember that suicide is a permanent solution to a temporary problem. As big as my phone issue, my parents' health, my exhaustion, and getting together for Christmas all seem right now, in a few days or, at most, a few weeks, most of these issues will be resolved. Do whatever it takes to keep going... but just keep going.



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.