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.

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!)

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.”

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.

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.

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.

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  - and it's 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 for 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 were 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 their checks. I told them what was going on so it wouldn't look like I just walked out on them. 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 home, 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. What they didn't know was that I was in a low cycle (because they don't understand mental illness.) 

They excluded us anyway.

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 seeing each other. It was a fun time, though it still had some tough moments because I am still in a low cycle.

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

So, I had 2 tickets that no one could use. Everyone I called already had plans. I even tried to give away my ticket too so my boyfriend could go with some of his guy 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 enjoy it. I offered the tickets to them again and they said they would go.

The logistics of getting them there so that we could get a few of the limited handicapped seats in a general admission scenario was a nightmare. But we figured it out.

I'm glad I went because it was the only Christmas-y thing I think I'll do this year (outside of family stuff.) I was so tired from 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. It didn't feel like Christmas Eve, as I had 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 exchange 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 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 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 each time to try to fix it. But this time it was lower than even her usual bottom. 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 by 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 team then?) I helped my dad gather up the things she needed before he left.

It's now 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 (Dec 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 in the past. I'm sad, but honestly, I'm 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:

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

- The second was 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." However, know that if you aren't, it's okay. Whatever junk you are going through will end one day, I promise. Keep going so you can make it to that day.