Four Go on a Day Trip... All Have Invisible Illnesses... Resulting in a Day to Remember

For years I have wanted to visit the Georgia Aquarium. Due to a series of circumstances, earlier this week I was able to finally do so with some of the people I love most in my life - my boyfriend, my daughter, and her fiance'. 

I won't say who has what, note that some of these conditions are dealt with by more than one person, and know that I might miss some of the diagnoses, but between the four of us we deal with...

- MDD (major depressive disorder)

- Bipolar Disorder Type 2

- Dysautonomia/POTS

- Still's Disease (similar to Rheumatoid Arthritis)

- Anxiety issues/various phobias/PTSD

- Addiction

- Mobility issues

- Migraines/headaches

- Osteoarthritis

- Fibromyalgia

- Joint Hypermobility Syndrome

- Sjögren's Syndrome

- Sleep issues/Insomnia/Sleep Apnea/Narcolepsy

- ADHD

- Dissociative Identity Disorder

Like I said, I might have missed some. But needless to say, going on a trip, even a day trip, with the four of us is, um, an adventure.

For one thing, because any one of us might need it at any time, we brought a wheelchair, knowing there would be a lot of walking throughout the day. One of us has a service dog, so he came along - with all of his supplies. I brought one of my cameras though it turned out that it just wasn't worth it to try to take pictures with it with everything else going on, so I just used my phone camera instead (the quality wasn't as good but it was so much easier). 

Though none of us are hearing impaired, between issues like ADHD, one having a bad headache, and things like brain fog that all of us have at times, communication was difficult at times. The fact that most of the aquarium was loud didn't help. Background music in almost every area plus all of the people talking, or at least trying to talk, over the music made it hard.

Speaking of the noise, the aquarium was also way overstimulating. The repercussions of COVID have made all four of us more sensitive to light, noise, and crowds. This aquarium had a lot going on both visually and auditorially and it was just too much for our minds after living in quarantine and reduced capacity situations for so long. Actually, it would have been difficult before COVID, but getting used to more times of quiet and isolation made it harder than before. In fact, I ended up using the noise-isolating earbuds I have for shooting concerts.

COVID also complicated the mobility issues that we all have in various forms. Even though all four of us have tried to get out and exercise some through the past year, it has been still much less than when we all worked full-time jobs and were doing something outside of the house every day.

We did pretty well, considering. We took turns pushing and riding in the wheelchair as needed. We took breaks when the service dog got overwhelmed. We took breaks when we got overwhelmed. We took our time at the exhibits and sat and chilled at some of the big tanks, just watching the aquatic life. 

But we also had a few episodes and meltdowns. The entire day didn't go "smoothly." I'm not going to list specifics, but one time I noticed a sensory isolation booth geared for those with autism, and I almost jumped in there for just a few minutes to get away from all of the stimulation and honestly, to get away from these people that I love so much.

I would love to go back. To be perfectly honest, I'd love to go back completely by myself... to take time taking photos at each exhibit and to rest whenever and for however long I needed without worrying about anyone else. Dealing with the stimulation of the environment is enough without trying to take care of others.

However, for every difficult moment, there were many more wonderful ones. I loved hearing my daughter laugh at some of the animals. It was wonderful watching her interact with the woman she loves. Observing the amazement in the service dog's eyes around the low-to-the-ground tanks was something I'll never forget. And finally, getting to spend a day with the love of my life outside of our regular routines was priceless.

A quick piece of advice before I end... even though there's no way you'll be able to predict every scenario (like I really thought I could use my professional camera and ended up lugging it around for nothing), planning for any possible contingency helps. Having the wheelchair, the service dog, carrying water (even though technically we weren't supposed to), and having the earbuds made a big difference. I can't even imagine how hard the day would have been without all of that. 

I hope that this account helps someone not feel so alone when a day like this doesn't go smoothly. A lot of times the expectation of walking around all smiles, like in a commercial, sets us up for failure. A lot of times those of us with invisible illnesses won't use aids like a wheelchair, fearing what others might think. A lot of times, in fact, probably most of the time, the day won't go as planned.

But it's so worth it. The memories I have of this particular day are worth all of the hassles. And even though my family has a lot of issues, each one is worth it.

Disappointment

As I'm writing this, I'm in the media room at Barber Motorsports Park. I'm here to photograph a Motorsports chaplain for an article I wrote about him and while I'm here, I also have been able to get some decent photos of the practices.

I should be incredibly thankful. I mean, how many photographers my age ever get these kinds of opportunities? A few months ago, I wasn't able to be in the media room, but I was able to shoot trackside for an Indy race - and one spot I shot from was about 10-15 feet from the cars as they passed at approximately 150 mph. 

But yet I'm disappointed. This weekend has had horrible rain. Friday (practice day) was wet but it only sprinkled some - no torrential rain. 

Yesterday (Saturday) the real rain started. I shot a foot race in the morning and even though I took most of my photos from the car, I still got soaked. I ended up using my poncho as a barrier to protect the electronics in my door (the locks and window controls). Eventually, the poncho fell into a puddle and got soaked, inside and out. Between that and the fact that the rain was supposed to keep up through the afternoon, we opted out for day two of the racing weekend.

Not going Saturday afternoon meant that there was less of a chance that I would get the specific photo I had hoped to use in my article. You see, for a big race like this, the chaplain prays with the riders before each race. He made arrangements for me to go out and take pics of him doing so - on the track where the riders line up for the race start. It could be a once-in-a-lifetime activity... and the rain has prevented it for every race so far today, except the one I missed because of a miscommunication with him about where to meet.

Because he doesn't have time to pray with the riders for "quick starts" and those aren't changed until close to the time for the race, I can't go anywhere else and shoot - there's not enough time. So today I haven't been able to shoot the action OR get the photo I wanted.

I'm so upset and I really shouldn't be... It's amazing that I had a chance to "live" in the media center at Barber Racetrack for a big race weekend; it's really cool that I already was able to watch a press conference after a race; I did get some good photos and it's not like a needed more than a couple for my portfolio; and I was able to get a photo that I can use for the article, even if I don't get the one I came for.

I keep repeating to myself the Serenity Prayer - and reminding myself that the rain is definitely something I cannot change. I am having a hard time not beating myself up for coming yesterday afternoon as well as for not getting to the prayer time this morning - but the forecast showed that it was supposed to be nicer today so I just knew that I would be able to get what I needed.

Honestly, there are still two races to go. The forecast is showing the heavy rain continuing, but there's always the small chance that one of them will do a regular start and I'll still get to get what I came for.

But even if I don't, it ultimately doesn't matter. Like I said, I can't control the weather; I can't control the timing of making the calls about quick starts; I can't control that there's not enough time to find a place to shoot in between races and still be available for the possibility of catching a prayer. 

All I can do is try my best to control my disappointment and hopefully focus on the positive... and remember that life isn't about getting what you want all of the time.

Update:

Well, there was a quick start for the next to last race so that one was out. Then the weather started clearing up. I was very hopeful that the last race (which was the highest level group), would have a long start and I could get that photo.

I got ready and started to head down to the track when I got a call. It was a woman so I was taken aback at first. She introduced herself as the chaplain's wife and told me that there was a medical emergency with one of those involved with the race and that he might have to go to the hospital with him. I told her that of course, it was okay as that's the most important part of his job. But after getting off the phone, my true emotions emerged.

I couldn't believe this happened. Really? I was torn. I hate to say it but my immediate response was complete disappointment and sadness for the missed opportunity. Then it quickly changed into compassion for whoever it was that had the medical issue as well as for the chaplain, because he wanted that photo as much as I did.

But when I got off the phone all I wanted to do was cry. Thankfully, I was out of the media center when I got the news so I didn't have to stay completely composed. I was also mad at myself, as I didn't go to the race on Saturday afternoon and I realized I should have.

Honestly, though, who would have predicted all this? The miscommunication in the morning, the ongoing rain when it hadn't been forecast in the afternoon, the medical emergency? 

However, it all changed with a call from my boyfriend and photography partner. He found out that we could go into the pit area and shoot with the credentials we already had. We had been told we could during a practice day but then got in trouble when we tried to do so, so we assumed it was the same on race day. 

So even though I didn't get that photo I really wanted, I did get to shoot from the "hot pit" area, a place that you usually have to have a special pass to be in. Because I was in the media center most of the afternoon, I got to see and shoot a few more press conferences. I also got to rest, which, because I couldn't sleep much at all the night before, was much needed before that last shoot (I wouldn't have made it through that last race otherwise). 

I'm planning to try to find out how the medical emergency person is doing and I'll try to remember to do another update about that. So more later on this ongoing weekend.

One of "Those Days"... and Expectations

Today has been one of "those days" - the days we all have but no one enjoys... the days when everything seems to go wrong... the days we feel like we are spinning our wheels.

But today I realized something - expectations make days like this seem even worse than they actually are. Let me 'splain.

I woke up ready to go. Woo-hoo, I'm manic! Being manic for me means waking up early, ready to work. It means I'm able to tackle difficult tasks with much more confidence than usual. It means I'm able to socialize, make phone calls, and deal with people in ways I can't when I'm depressed or even sometimes when I'm stable.

(If you haven't read my other blogs, I'm bipolar, type 2, which means my mania is less severe than type 1 and I'm usually able to function fairly well. I don't want to make it sound like something everyone should have, though, as it also has many drawbacks. I'll often find myself talking too much and even when I realize it, I can't stop. I shop online more than usual but I'm not embarrassed to return something so when I am out of control there, I can usually fix it when I come down. Though I am more energetic and full of ideas, I'm also scattered and have a very hard time focusing. Sometimes my anxiety can go through the roof during this time. But it sure beats being depressed and feeling like you are swimming through molasses day after day.)

Back to today... I woke up early and instead of laying in bed trying to make myself get going, I went almost immediately to take a bath and get to work. I finished an article I started yesterday, completed some little tasks I had been putting off, had a phone meeting with a sponsee, and then had teletherapy.

The therapy appointment was very helpful as we worked through a big dilemma I'm facing and I got not only a lot of support but some very practical tips on how to handle it. Because I didn't want to forget what she said, I spent some time after therapy working on the suggestions we had figured out. 

By this time it was lunchtime. I worked while I ate (which is typical for me, especially during an up-cycle) and then when I got to a stopping place, I decided to take quick break before getting ready for a doctor's appointment. 

Then the day started going downhill. I went to that doctor's appointment only to find out once I had checked in that I didn't need that follow-up after all. I tried to stay positive and thought, well, since I'm dressed and out (I work from home so I am super casual, sometimes staying in PJs all day), I might as well finish the errands I put off until a day I have to be out anyway.

I went to drop off a prescription at my local DME (durable medical equipment) store. When I got there, I had to wait a while and when someone finally helped me, she told me that they didn't have what I needed. I know a few weeks ago I called them about it but, whatever. I couldn't argue with her and make the brace I needed appear out of nowhere. She was very sweet and gave me the phone number of a place that did carry them.

I went out to my car to call them and get the address so I could still finish that task today... only to find out that I would have to make an appointment that would take 45 minutes to an hour to complete - and their location was all the way downtown. So that would have to be put off for who knows how long.

Another item I had on my to-do list for way too long was to get the mail-order glasses I got checked out by an optician. The eye care place I use didn't have an optician in today so I pulled over to pull out the flyer that came with the glasses to get info about another optician in the area. I didn't have the flyer. I did have the receipt so I called them. Meanwhile, I tried the glasses on again and they seemed to work better. I told him I needed to check them out again at my computer (as that's what they are exclusively for) and I'd call back. 

I had planned to meet a friend at his office but he didn't text me back so I wasn't sure that he was still there.

I did get one thing accomplished... I had to get a car wash subscription I had bought canceled (extreme coupon deal) and I was able to get it done without a problem.

I got home and realized I hadn't seen the other pair of glasses I got (for other tasks as needed) in a while and ugly-cried as I thought I had accidentally pushed them into the trash can under the table where I keep all of the stuff that needs to go elsewhere. I looked and looked for them and finally gave up (I never did find those glasses). 

I was talking to my boyfriend at the time and I burst out, "This isn't the way the day is supposed to be going. I'm manic!" 

The realization hit me... those dang expectations got me again. Because the day started so well and because I had energy I usually don't have, I thought that the day would be without flaws. 

But there is good and bad to EVERY day. In fact, I am trying not to get to the point where I don't label an entire day as good or bad. Each day is full of good, bad, boring, exciting, fulfilling, scary, and/or depressing moments. And each day is actually a good day, because I'm still here. I'm still trying. I'm still putting one foot in front of the other.

Though every moment might not be classified as "good," life is good.

Colonoscopy While Dealing with Invisible Illnesses

Author's note... This post is taken from my experience and my research. I'm not a doctor and so don't utilize any of my tips unless you talk to your doctor about them.

I just had my first colonoscopy this past week. This is something I had been dreading for at least 20 years, as I have a bad gag reflex and I had heard all of the horror stories about the prep solution being difficult to get down.

One of my biggest worries other than gagging was that I would do all of the prep and it wouldn't be done well enough. This caused me to second-guess the way I interpreted what my doctor said in his "before-the procedure" notes.

As with so many of the experiences that those of us with anxiety worry about, it wasn't as horrible as I thought, though I did run into some issues I hadn't even worried about. As the day came closer, my anxiety increased. I found myself online more and more, looking for tips and the experiences of others to help me fight the worry. 

One thing I always wondered while during my research was, "Do those whose experiences and tips I'm reading also face dealing with invisible illnesses?" As you probably know first-hand, the experience of someone with, for example, anxiety issues already, can totally lose it during a test that even the most positive person might have some anxiety about.

I thought it might be helpful to share what happened in my case to possibly help others facing the same dread over this necessary test.

- I wish I had known why it's so important:

In hindsight, it would have been helpful to know how colon cancer progresses. Remember that I'm not a doctor, but my understanding is in at least most of the cases, polyps develop and those can turn cancerous. So the screening is to look for and cut out those polyps before they have a chance to grow large enough to increase the risk of cancer. 

When I read that, it all made sense and wasn't as scary. Maybe it should have been - I mean, who wants to have something cut out of the inside of their intestines? - but it gave me hope. It actually is pretty cut and dry - if the doctor sees a polyp, he cuts it out. It's biopsied and you know one way or another if it's precancerous or cancerous. Usually, it's not.

I guess I thought it was like a mammogram, which, because I'm a large woman, always seems like a guessing game. Fibrous tissue can easily look like lumps and you have to totally trust that the radiologist reading the scan knows the difference. I've been called in more than once to have a follow-up ultrasound to make sure a questionable area wasn't cancer. 

(But at least mammograms don't include almost a week of prep beforehand.)

- Being fully "cleaned out" before the test:

Until I started my seemingly endless Googling about all this, I didn't realize some of the whys on the importance of the prep. After hearing them, it made it easier to comply.

I'll get into the specifics in a bit, but to sum up, if the doctor can't see the inside wall of the colon clearly, he can't see the polyps and other abnormalities to either fix them or come to an accurate diagnosis. The reason for no red or blue dyes on the clear liquid day is because it can look like blood on the scan.

- The prep week:

My understanding is that not every doctor suggests this method of getting cleaned out, but mine wanted me to do two days of a low-residue diet and one day of a liquid diet before drinking the prep solution.

They suggested that you read over the list of what you can and can't have for those 3-4 days as soon as they come in the mail so that you can grocery shop accordingly. However, because I was anxious about the procedure and I have an eating disorder, I procrastinated even reading the list (does anyone else do that?). I have a hard time during the best week making a grocery list for what I might want to eat in the days ahead - and these restrictions added a good bit of stress. 

So a couple of days before the prep started, I finally looked over my options and tried to plan out what I needed to get. As I live in a small area, have a very tiny fridge, use a dresser for a pantry, and am on a limited budget, I have to be selective in what I buy. 

I figured out a few things... I knew I could eat peanut butter and jelly one or two meals (creamy peanut butter is okay), but I eat jam and fruit spreads so I didn't have jelly. One thing I had to put on the list. I needed white bread because I usually use 12-grain. The second thing on the list. I knew I wanted jello (it's a treat I rarely eat because of blood sugar issues while also trying to avoid artificial sweeteners) so I found some sugar-free jello and added it. 

Then I started running into questions about both the low-residue and liquid diets. A few of these were... Was beef broth considered a clear liquid? (Yes) Why could I have Diet Coke and not Diet Dr. Pepper, which is my "coffee" every morning? (Because of the cherry flavoring in Diet DP) Was watermelon considered a low-residue food? (Yes) Were strawberries? (No.) I know well-cooked vegetables were okay but was well-cooked broccoli included? (I couldn't find an answer so I just didn't eat the broccoli). 

I ran into an issue as I got started on the diet - I hadn't thought through enough scenarios. Because I live in an apartment area in my parents' house, I can always get something from them if I don't have it already. I knew they almost always have ice cream (another treat I rarely eat) and I was looking forward to that. But when I went to get some, I realized that all they had were specialty flavors, not plain flavors like chocolate or vanilla. So that was out. 

I hadn't thought about the fact that most things in the low-residue diet didn't crunch and I like that sensation so when that craving hit, I realized that all I had were high-fiber items like wheat thins, tortilla chips, and popcorn. I finally found some plain crackers and munched on them.

The list included "well-cooked tender meats." How tender do they have to be to make sure they were tender enough? (Like the broccoli, I couldn't find an answer so I just skipped meat). 

I had questions like these about the majority of items on the list so it was a difficult few days of questioning anything I put in my mouth (and often worrying about it before, during, and after eating it).

- The prep solution and the, um, results of drinking it.

This was the thing I dreaded most. The afternoon before I had to take it the first time (at 6pm), I found myself looking at the clock every 15 minutes or so. I tried to watch a movie to keep my mind off it, but I couldn't do it. Google to the rescue! My research began again in earnest.

What did it taste like? Did anyone have tips on how to get it down? How long did it take to work? How long would you be, um, occupied with its effects? 

I started with general questions and then realized I wanted to know about the specific prep solution I was prescribed - Suprep. So I started googling again.

These are some of the tips my doctor mentioned or I found in my research and whether or not they worked for me.

    - Take anti-nausea medicine.

My doctor prescribed anti-nausea medicine for me. He didn't tell me how to use it so I looked it up. From all I read, nausea could hit when you start drinking the prep and I found that it took about 30 minutes to work, so I tried to take it 30 minutes before I started each prep. I didn't have any nausea so this is one I highly recommend. (I often get nauseated very, very easily.)

    - Take Gas-X.

My doctor told me to take two 160mg or 180mg tablets of Gas-X/Simethicone right before starting the prep each time. I could only find tablets in 125mg so I took three each time. It's supposed to help with bloating and I didn't experience much so I guess it worked.

    - Mix the prep and water you have to drink afterward with something to help the taste and get down that massive amount of liquid. 

I found out that the best description of the taste of Suprep solution is cherry/grape cough syrup, mixed with seawater, with a dash of dish soap. So I was determined to find something to help make it more bearable.

This was one time I ran into trouble. Adding Sprite is an option, but sometimes it can make me gag on its own so it scared me to try. I had bought some Gatorade and at first, planned to use the Gatorade as a mixer, but then I realized that the prep was already described as salty. So, should I add even more?

I keep drink mixes around - both electrolyte solutions and others - to help if I'm having a day where I just can't drink any more plain water. However, almost all of my favorite drinks include cherry flavoring so I didn't have anything that would work. I tried my parents' stash and found the same thing - everything was red, purple, or stuff I didn't like. 

Looking again much more carefully through my stuff, I found a tube of powder to make lemonade. I thought that it would work and be okay to go with the cherry/grape-ish flavor others mentioned it had. 

It didn't taste nearly as bad as I thought. I wouldn't ever choose to drink it and it got harder to get down the more I drank, but I didn't gag once.

    - Drink it cold.

Many sites said that if you chill it before drinking it, it helped. Personally, I don't know if it made a difference in my case, but it didn't hurt to stick it in the fridge a few hours before.

    - Use a straw.

Again, many sites recommended using a straw to bypass your taste buds. Maybe if you sipped a little at a time, it would work, but I wanted to get it down pretty quickly so I still tasted it. With the 2nd prep (which I had to do at 3am the next morning) I still used a straw but I seriously thought about skipping the straw and chugging it.

    - Take a shot (glass).

I read this suggestion online but to me, there would be so many shots you'd have to drink that it would take forever to get it all down. I told my daughter about it later and she mentioned that you could do it like a drinking game, which I wish I had thought of. If you decide to try this idea, make sure the cues you use for your game happen pretty often as you have I think an hour to get the prep and 32 more ounces of fluid down. So I can't say whether this works but I'm planning to try it the next time I need this test.

    - Exchange Gatorade or Powerade for the extra 32 ounces of water. 

My doctor's orders didn't specify whether it HAD to be plain water that you drink after you get the prep solution down and I found plenty of sites where others had used Gatorade or something similar as that liquid. I know that I wouldn't have been able to get enough plain water down so that was my justification - it was better to get down a lot of Gatorade, even if it wasn't the best option, instead of little to no water.

    - Eat a flavored item (that's included in the clear liquid guidelines) in between sips.

Those online recommended Italian ice or sucking hard candy between sips. I used some of my jello for this. Drink some gulps, eat a bite of jello. This killed the aftertaste, which I can tell would have been difficult for me to deal with.

Note - I don't know if I recommend this next part, as I worried and worried about it after I did it, but I also ate jello, mixed the prep with lemonade, and drank Gatorade instead of water during the second prep. My doctor's instructions said not to eat or drink anything after finishing the prep and my anxiety told me that eating jello or drinking Gatorade instead of water was going to mess it up. My head told me that my body would treat the jello as liquid as soon as it warmed up and that the electrolytes of the Gatorade were helpful, as I have a tendency to get dehydrated easily - and that all of this would be flushed out soon anyway. 

It worked out fine as I was completely clear for the test so at least in this one instance, I know it's okay to do these suggestions for both prep times. But it's a risk you'd have to take on your own, knowing that there's a possibility it won't be okay for you.

    - Use wipes instead of toilet paper and Vaseline, Desitin, or something similar after going.

I do the first part of this suggestion on a daily basis anyway and didn't want the hassle of doing the second part. It makes sense on paper, but honestly, that night you won't know how long you have between, um, episodes. It would be a nightmare to be in the middle of applying Vaseline when the explosive diarrhea shows up once again. However, if you wanted to try it once things seem to be calming down, it does make sense.

    - Wear something loose and comfortable. Slip-on shoes can also be helpful.

I usually wear shorts or jeans since I'm a freelancer and most of my work is from home. It was recommended that anything with a tight waistband could be uncomfortable so wearing something looser is good. I have a cotton casual dress I rarely wear and I brought it out for this procedure. I also wore slip-on shoes. After the procedure, you are pretty woozy and one less thing to deal with when getting dressed is helpful.

Just a few more suggestions about the day of and the day after it's over.

    - Be prepared to rest all day.

In my case, I was lucky and got a good amount of sleep during the night, even with the prep interrupting my sleep some. The meds they used for the anesthesia gave me an extremely restful nap during the procedure. I was a little groggy but it was nothing like other times I had anesthesia and I was fully awake by the time I got home. I did run out of steam in the early afternoon and needed to take a nap but overall I was okay.

But the vast majority of accounts I read mentioned being really sleepy so plan to take it easy the day of if at all possible.

    - Watch what you eat for a few days afterward.

My discharge notes said to eat easy-to-digest foods on the day of the procedure. I did well that day, other than a good bit of bloating from the air they use during the procedure that resolved pretty quickly. So, I thought that the next day I could go back to my normal diet.

WRONG! I don't know if it was the colonoscopy or my IBS, but the next day I ate a bean burrito at lunch. MISTAKE! I was extremely bloated and gassy all evening, then had diarrhea much worse than the night of the prep all night. It only resolved after taking several Pepto-Bismol tablets and Gas-X tablets. 

The research I did to see if this is a normal occurrence after a colonoscopy had mixed results. I can't say whether it was the colonoscopy itself, the colonoscopy irritating my IBS, a typical flare-up of IBS, or something else, but I would advise caution in this area, especially if you already have digestive issues. You might want to stay on a more restricted diet a few days, just in case.

All in all, though I hope I don't have to repeat it again too soon, it wasn't as bad as I thought it would be. I tried to think of the good aspects of the different diets to make it more bearable... (Being told to eat white bread instead of grain? *Woo-hoo!* Having so few options that ice cream and jello are okay? *Yes! Let's do that!* Drinking Gatorade instead of water all day? *Sounds like a plan!*) 

I found out that something I had consoled myself with during the weeks prior turned out to be true... my ongoing digestive issues have been much worse than the prep night was. So even though it wasn't fun by any means, it wasn't something I don't deal with off and on throughout my regular life. And the benefits of catching colon cancer early FAR outweigh the yuckiness of the test.

So, if you've been putting it off, make that appointment. 

(Just make sure you read your doctor's suggestions and research your questions well in advance of your test.👧)