Warm Fuzzies for Christmas!

What the heck is a warm fuzzy???

In 1977, Claude Steiner published a children's book called "The Original Warm Fuzzy Tale." The story is about an island where everyone gives out warm fuzzies all day, resulting in everyone being happy. One day a grouchy tourist arrives and convinces the islanders that warm fuzzies are precious and should be kept to themselves, so people stop giving them out. Everyone becomes grouchy and unhappy and warm fuzzies disappear. Then one of the islanders who had been away returns home with all of her own warm fuzzies. She happily gives them out and the people realize the mistake they made in hoarding their fuzzies. Happiness descends upon the island once again. 

So, I ask, what is a warm fuzzy?

Oxford Learner's Dictionary says, "feelings of affection, comfort, and support, or things that give you these feelings."

The Britannica Dictionary says, "feelings of happiness and affection."

You get the idea.

During my last grocery trip, I passed the deli counter. Something smelled wonderful. I paused and inhaled deeply, relishing the savory aroma drifting my way. The worker behind the counter saw me and asked, "Can I help you?"

I said, no, but then added, "But whatever you're cooking back there smells absolutely wonderful! You guys are doing a great job!"

I thought the deli worker would just nod her head and return to work, but her eyes lit up, she gave me a hearty "thank you!" and this great big smile spread across her face like the warmth of the sun on a cold winter's day. 

That moment has not left my mind since. 

What I said was a little thing. A thought I had in passing. But apparently, it was the biggest of warm fuzzies for the counter worker. And funny thing? That big smile on her face was the toastiest of warm fuzzies for me.

I can't tell you how often I have had a "warm fuzzy" thought about something someone did, how they looked, something they said . . . something! And I never told them. Never said a word.

There are three proverbs that are perfect for this:

A word fitly spoken is like apples of gold in pictures of silver. (Proverbs 25:11);

 . . . a word spoken in due season, how good is it! (Proverbs 15:23);

And the best one . . . 

Withhold not good from them to whom it is due, when it is in the power of thine hand to do it. (Proverbs 3:27)

Aren't giving away warm fuzzies in all our powers? Especially at Christmas?

I've heard my whole life that when you're down, when you're not feeling good (and colitis patients don't feel good a lot) serving people, helping others, looking and reaching outward can lighten your pain.

That's hard to believe when you're going to the bathroom every ninety minutes and curled up on the bed groaning in pain.

Nevertheless . . . I will never forget the look on that counter worker's face. Or the way I felt when she thanked me with that glowing smile.

Imagine how much more happiness would wind its way through this world's darkness if we all gave one warm fuzzy, even just one, everyday, to somebody, family, friend, acquaintance, or stranger!

I think that Christmas "spirit" that we feel and talk about so much is because people are just a little more kinder, softer, lighter, forgiving, patient, optimistic, and . . . dare I say it . . . happy . . . at Christmas time. Why is that? I think it's because we give out more warm fuzzies at this time of year. Then January comes, and we slide back into hoarding our fuzzies.

So that is what I wish for this Christmas. That we find our warm fuzzies and then remember to give them away, hopefully causing a flood of smiles.

All year, and in all our pain or in all our peace!

Quotes:

“A kind gesture can reach a wound that only compassion can heal.” - Steve Maraboli

“I could really use someone else's smile today.” -  Richelle E. Goodrich

Last year's December post: Christmas Too Commercial? That's Not Such a Bad Thing 

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© Colitis Senioritis 2023

Update December 2023: Back Up Again, Inch By Inch

It has now been three months since I was back on Rinvoq. And I think I am seeing some progress.

The pain that I felt when I wrote last month's update is gone. My stomach is still unusually gurgly (Is that a word? Microsoft Word says, no,) but not as much and it is diminishing.

The most encouraging sign is that four times in the past two weeks, my stool has been more solid. Like a 3.5 on the Bristol Stool Chart. (I'll take that!) The rest of of the time has been from thinly round to mushy. (Four to six on Bristol.) I'm hoping that I will continue to see stool improvement.

I'm still very tired and feeling blah. But that may just be the way my body is. Or it could be the winter weather. It is cold and gray and dark outside, and my body just doesn't function well in the winter. It's like walking through molasses or water all day long, fighting to move yourself forward through every step of the drag pulling on you. And despite wearing layers of clothes, I'm cold almost all of the time. But it was like that long before my colitis diagnosis.

I am cautiously optimistic, which is much better than last month when I was discouraged. We had a house full of people for Thanksgiving and everything went well. As of today, it feels like I should be okay for Christmas.

Speaking of Thanksgiving, I said that some gravies seem to cause stomach problems. I had no problems eating turkey gravy . . . thank goodness! 

Next update: January 2024, Reaching For 3.0!

Previous update: November 2023, On The Downhill Side (Not a Good Thing)

Update November 2023: On The Downhill Side (Not a Good Thing)

I ended my last health update post with, "because of going off Rinvoq for six weeks and not improving after getting back on, we'll see how I'm doing in two weeks."

Two weeks later, I was doing okay. The week after however, not so much. It's not that I was doing badly, but I was definitely going downhill. 

And here we are, a month later. I'm not seeing improvement. I've had a few days where I've gone to the bathroom three times. That is not bad and still MUCH better than when I was really awful, but it is two more times than normal. I'm passing more gas and my stomach is more growly. My stool is worse and is one step away from diarrhea, although I have had a couple bouts. I had one small accident.

This past week my stomach has been achy. On a scale of one to ten, the achiness has been between one and four. Three days ago I experienced some stabbing pain. 

Then there's the fatigue. I'm tired most of the time, but the last couple of weeks have been worse. Overall, I just haven't felt good. I've lost a few pounds.

Keep in mind, this is not food related. It is 100 percent medicine caused. 

I've now been back on Rinvoq for six weeks. I tapered off of the budesonide completely four days ago. I don't know if it is related, but I felt the stabbing pain the day after I stopped the budesonide.

I admit, I'm in discouragement mode right now. When you have a chronic illness, discouragement is a familiar, but thankfully not constant, companion. But it does step next to you and walk along when your condition starts going backwards. Part of it is you don't know how far back you're going to go. Just a little? A lot? A WHOLE lot?

It is also frustrating that this is the third holiday season where I've been on the worse side or heading that way. Someone told me it must be the stress of the holidays, but one, my holidays are not that stressful, and two, stress doesn't seem to affect my condition. And that has been tested.

On the good side, I'm still able to eat, drink, and sleep, things I used to take for granted.

So . . . and I know I end a lot of my health update posts with this, but nevertheless . . . here we are again, waiting. Because it is the holiday season, if I start getting bad I will jump right back on the prednisone before you can say pass the turkey and gravy. 

But let's hope it doesn't come to that.

Next update: December 2023, Back Up Again, Inch By Inch

Previous update: October 2023, My Brain Melts But My Body Stands

Other Health Updates

Change in Perspective: This Is Not a Poop Disease

A few months ago, I was reading through a colitis forum. A poster who had struggled for years with medication and side-effects asked, "Anyone just say forget it, I’m done with the drugs and try and deal with it through diet and healthy living?"

A few responders said "diet and healthy living" worked, but their symptoms were mild. Several said they had tried, but regretted it because their condition deteriorated and they quickly returned to their medications. Most stressed "do what works best for you, but don't compromise your health." 

But one poster's response caught my eye:

"UC is not a GI disease. It is an autoimmune disease that primarily manifests in the colon. You cannot eat your way out of an autoimmune disease. Medications are essentially required with UC…like most autoimmune diseases."

It was if someone smacked me alongside the head.

From the beginning, I have thought, I have a poop disease.

I realize now, no, I don't. I have an autoimmune disease.  

Wow. How did I not see that? How does that change things? Does it change anything?

Well, yes. First, when someone asks about my health, I say, "I have ulcerative colitis, an autoimmune disease, where my immune system attacks my colon causing bleeding ulcers." Some people respond differently now, when they hear the words "autoimmune disease." They may not know what ulcerative colitis is, but they understand what "autoimmune disease" means.

Second, I am more diligent when it comes to, not just my health, but the health of those around me. If I'm sitting in a meeting and the person in front of me starts coughing, I waste no time masking up, protecting my body and its wonky immune system. Before, when I had a "poop" disease, I didn't give someone coughing much thought. (Except for grandkids. Don't get me wrong, I love my grandchildren, but young children are just brimming with cold and flu germs.)

Third, and this kind of goes with the first thing, people are more aware around me. Before, my "stomach problem" was not enough reason for someone feeling under the weather to avoid me. But knowing I have an autoimmune condition, if they have even slight symptoms of a cold or flu, they are more inclined to keep their distance.

Fourth, there are way more people living with an autoimmune condition verses ulcerative colitis. Therefore, that means there are more supportive and understanding people out there than I thought.

Fifth, and this may sound silly, but my self-narrative is better. Having an "autoimmune disease" feels so much better than having a "poop disease." Even if I have to occasionally wear a diaper. Seriously.

Over the years, I have had several "change in perspective" moments. It is like driving through a canyon, going over a hill, and having the whole valley suddenly appear before you in a beautiful, vast, vista view.

It often takes your breath away.  

So are those times when my perspective changes. And this is one of them.

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 © Colitis Senioritis 2023

Update October 2023: My Brain Melts But My Body Stands

Insurance craziness

Well, this has been an interesting month for insurance. About two weeks before I ran out of Rinvoq, I called the specialty pharmacy to see if I had to initiate the next month's supply or if the pharmacy would automatically send it. They looked on their computer and said there was a problem with my insurance and I needed to call them. I did, and they said they never received authorization from my doctor. (This was despite the fact that I had a letter which said the insurance HAD okayed Rinvoq.) 

I had a routine doctor's appointment the next day, so while there, I told my doctor's assistant what they told me. She was not happy, as she said she had sent the authorization long ago. She faxed it again, and asked me to watch so I could witness the authorization being sent. She then asked me to call my insurance a few days later, which I did.

I spent hours going back and forth between Abbvie (the Rinvoq people), my insurance, and the pharmacy. I thought everything was worked out, including my being put on a program that reduced Rinvoq's very expensive price, which is what I thought was already in place.

However, days later, with only a week's worth of medication left, I received an email from the pharmacy saying I needed to contact them immediately. They said there was a problem with payment. So back to the phone I went. 

Over the course of three days, I spent hours on the phone, both talking to people and on hold. (Thank goodness for laptops! I was able to get much done on my laptop while on hold.) Again, I bounced between Abbvie and my insurance, ending with a lot of time talking to the specialty pharmacy people. Honestly, I don't know how people do it. I consider myself an intelligent person, but dealing with this situation was mind-boggling, mind-numbing, and brain-dissolving.

I was finally told that an escalation team would contact me the next day. I informed them I was going out of town and would be out of contact. I left on my trip fully expecting another round of hours-long phone calls when I returned. 

On returning home, my husband noticed a package on the porch. It was the Rinvoq. I was extremely relieved because I had run out of pills, but nervous because of the cost. I checked my email and there was a receipt for payment of the Rinvoq, and it was the lowered amount I thought I had been approved for before. I am grateful, but also befuddled.

So here we are.

I STILL don't know if my pharmacy will send the next month's supply out automatically or if I have to initiate it myself.

As this is October, I can say it. Be afraid. Be very afraid!

How I'm doing physically

When I started tapering down the budesonide, my stool went downhill. I hoped the Rinvoq would help, but after restarting it a month ago, I'm not seeing much improvement. My stomach still aches now and then, but not badly. I did have a small accident a few days ago, thankfully before I entered the garage as I was headed to the grocery store, so I was able to clean up first. If it had happened ten minutes later, I'd been in trouble.

There is good news. My husband and I unexpectedly received free tickets to a PGA tournament held within driving distance from our house. We spent two days there. We walked the entire course on the first day, and most of the course on the second. My body held up! I was able, mostly, to keep up with my in-very-good-shape spouse. There were lots of portable bathrooms all over the course, but in two days I only needed to use them once. I was extremely worried about the trip, both the driving part and the being on the golf course part, but it turned out quite well. And we did have fun.

However, because of going off Rinvoq for six weeks and not improving after getting back on, we'll see how I'm doing in two weeks. Just in time for one of my favorite holidays, Halloween. (Sigh.)

Next update: November 2023, On The Downhill Side (Not a Good Thing)

Previous update: September 2023, Can You Say Budesonide? (Not Really.)

Other Health Updates

"I Failed My Medication." No, You Didn't

I try to do a lot of research about colitis. As someone having this condition, it is important to learn as much as I can. Also, I need to read and learn so I can write intelligible (okay, at least semi-intelligible) posts for this blog. 

Some information is highly interesting. Some is highly boring. Every once in awhile, I read something and think, "You have got to be kidding!" When that happens, most of the time I just shake my head and continue on.

But sometimes I read something that is absolutely astonishing. (It does provide material for my blog.)

I've been doing colitis research for about a year and a half. But for the last few months, in articles, on forums and other discussion groups, I keep running across a common theme:

"I failed my medication," "I failed this med," "I failed that med."

Excuse me???

I have no idea where this came from, the idea that if a medication doesn't work, WE failed the medication. I don't know whether it is a new way of describing medications not working or whether it's been out there awhile and I'm just now hearing about it. Regardless . . .

. . . it is wrong. Straight out wrong.

We know that medications work differently for different people. One medication may work like a miracle for one person, but for another, be a complete disaster. I understand the frustration when others have wonderful results with a popular, affordable medication, but all it does for you is cause unpleasant and sometimes debilitating side-effects (sulfasalazine, I'm looking at you), or just plain doesn't work at all. 

If the medication works for other people, but not for you, I can see how it might feel like your body "failed."

But that is not the case.

It just means that your body, your condition, is operating differently. This is not a big surprise. There are billions of us on this planet; those building blocks that comprise each of us are both universal and very specifically unique. All of our bodies cannot possibly react the same to anything, let alone medication.

"But such and such medications work so well for so many people!" you say. Yes, but remember, there's probably something, medicine or otherwise, that works for you but not others.

I've written on this blog how I've gone through several medications trying to find one that will put me in remission and hopefully keep me there. Never have I said I failed those medications. My response has been, well, I tried medicine number four, and it didn't work. It didn't work. It, or in other words, the medication, didn't work. Moving on to number five!

When you have a chronic disease, there is a lot of talk about attitude . . . the thoughts you think, your "self-talk;" your outlook on your condition and on life; your hopes and your despairs; the value of a positive mindset as often as you can . . .

How in the world does saying (or even thinking) that WE failed our medications fit into that narrative???

It doesn't. If anything, it tears it down.

I've had multiple medications not work. It's not the medications' fault, it's not my fault. It's just the way my body works. Kind of like being afflicted with an autoimmune disease in the first place. 

I didn't fail my medications. You didn't fail your medications! The medications just didn't work or they stopped working.

Please, can we remove the word "fail" from our chronic disease vocabulary? There are more worthy words for our circumstances . . . persevere, strive, endeavor, flourish, moving on, and of course, hope. Always hope!

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© Colitis Senioritis 2023

Update September 2023: Can You Say Budesonide? (Not Really.)

In my last update, I said I only had a week of Rinvoq left. Well, my insurance problem was not resolved in a week, of course. I was going to jump back on the prednisone, but then realized I had some leftover budesonide. Budesonide is also a steroid, but not near as bad as prednisone, so I started taking the budesonide because I knew if the only medication I took was mesalamine, I would go backwards. When I took the budesonide before and it didn't work so good, it was because I was on one pill a day. After the Rinvoq ran out, I went on three budesonide pills a day. That was much better.

I had a routine appointment with my G.I. doctor yesterday. My insurance problems were finally figured out and I received my first dose of Rinvoq a few days ago. I wasn't sure if I could just stop the budesonide cold turkey and start on the Rinvoq or not. Since I've been off of the Rinvoq for five weeks (SIGH!), my doctor actually wants me to start the Rinvoq immediately AND stay on the budesonide, tapering off for a month.

I've actually done well on the 3 budesonide (how many times will I type that word in this blog?!?) daily pills. I've had LOTS of energy and gotten LOTS of things done. (Cleaned out closets, cleared junk out of the basement and then cleaned it, cut shoots from trees . . .) My stool was okay, although the last few days before my doctor's appointment it was a little worse and my stomach's been more achy.

Today was my first day back on the Rinvoq. I've actually experienced some slight dizziness. Not sure if it is related to being on both the budesonide and Rinvoq at the same time, or some random other thing. I'll keep an eye on it over the next few days.

And so! Once again! We wait! 

Next update: October 2023, My Brain Melts, But My Body Stands

Previous Update: August 2023, Only a Week Left

Stupid, Stupid . . . Stupid!

The title of this post says it all. But what or who was stupid? Me, me . . . me!

A family member invited us over for a Fourth of July barbecue and evening festivities. Everyone invited was asked to bring a side or dessert. There is a salad I love called an Overnight-Layer-Salad. My recipe makes a lot and I'm the only one in my household who likes it, so I rarely make it because most of it goes to waste. I decided to bring this salad to the barbecue.

This salad has lettuce, hard-boiled eggs, peas, bacon, mayonnaise, onions, sugar, and cheddar cheese. So far, I've been able to eat all of those things with no problems whatsoever. 

This is where my stupidity came in.

At the barbecue, I dished up a modest amount of the salad. It was soooo good! So I scooped another serving. And then another. (Stupid.) After all, I seldom get to enjoy this delicious salad! And then I took another serving. (Stupid!) Honestly, I lost track of how many servings I took. (STUPID!)

The rest of the evening went well and was enjoyable. I had a good night's sleep. But then . . .

About mid-morning the next day, I had to run to the bathroom. I had very loose stool and some cramping. A few hours later, it happened again, only now it was straight diarrhea. The bathroom trips continued through the day . . . and through the night, until about four in the morning. 

Thus my saying I was stupid. The running to the bathroom all day and night with diarrhea and cramping was completely my fault. It was a direct result of my lack of self-control. I probably would have been okay with one salad serving, maybe even two, but as much as I took, it might have made a person with a completely healthy colon get sick, let alone someone with colitis. 

But that's not all. There is more.

The day after my "aftermath" started, we were supposed to leave for a camping trip. During my four a.m. stint on the toilet, I was thinking, "We're supposed to leave in a few hours! Am I going to be okay? Should I not go camping? (I missed the previous year.) Should I go and take my chances? How could I be so stupid?!?"

I really was not sure what to do. However, in the morning, as I had gone over four hours without a bathroom run and my stomach did feel a little better, I crossed my fingers and climbed into our truck. My husband did remind me that we were towing a trailer and if needed, he could pull over so I could use the trailer's toilet. Thankfully, that was not necessary. And my stomach became better and better each day. So it was good that I did not stay home. But the whole situation added a layer of stress that was completely unnecessary.

That fact that I ate so much salad at one time was stupid. The fact that I did so within 38 hours of leaving on a trip was stupid on steroids.

Hopefully, I've learned my lesson. 

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© Colitis Senioritis 2023

Update August 2023: Only a Week Left

The reason I was not able to do a health update in July is because we were camping for three weeks. (Trailer camping.) That is a good thing. It means I was feeling well enough to venture out into the wilderness with only a camping trailer toilet to rely on. Last year, I was not able to join in on the family camping outing.

For part of the trip, our trailer was parked in a relative's large yard. While there, we slept in the trailer, but tried to avoid using the trailer toilet. When I woke in the morning, I would hurry into the house to use the house bathroom. That worked most of the time, but I did have one time where I didn't quite make it. (Sigh.) Sometimes when I start thinking I am headed towards a more normal life, my colon reminds me, "Not so fast . . ." It happened the morning after we had a delicious home-made chicken dinner with gravy. I've discovered that some gravies are okay for my body, some are not. But I haven't figured out how to tell the difference, yet.

In my last update, I said that my eyes were going kind of funky, and I wondered if it was the prednisone. Since being off the prednisone, my have have gone mostly back to normal, but not all the way.

I have now been on Rinvoq for six and half months. It has brought me to about 80% of where we (the G.I. doctor and I) want me to be. Although not 100%, the Rinvoq has done better than any other medication. 

However . . . 

As of July 1st, we changed insurance. My new insurance denied the Rinvoq for the same reason my old insurance denied it. (See January 2023 health update.) They want me to try an injection biologic first. So now the appeal process begins. Here's where the "however" comes in . . . I only have a week's worth of Rinvoq left. I seriously doubt an appeal process can be completed in a week. I may have to jump on the prednisone again, depending how long all of this takes. 

Stay tuned . . . 

Next Update: September 2023, Can You Say Budesonide? (Not Really.)

Previous Update: June 2023 (No July), Maybe . . . Possibly . . . Hoping?

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Trapped Inside the Doctor's Box

I am in my sixties. Since my teens, I have had three unusual health conditions, baffling medical professionals. The first, endometriosis, was resolved in my early thirties after a hysterectomy and more than twenty years of pain. The second, which started in my late thirties, is still ongoing, undiagnosed, and unresolved. The third is my ulcerative colitis.

From the beginning of puberty, I was in extreme pain every month for the first few days of my very heavy period. Doctors shrugged. After all, pain with your period was normal! I was told more than once by a doctor to just take over-the-counter pain pills. A few months before I was married, at one of the happiest times of my life when everything was wonderful and in sync, while discussing my monthly pain symptoms, the doctor asked if I would like a referral to a psychiatrist.  

Years later after two years of trying to conceive a third child, I realized there was more going on than painful, debilitating periods. I went to a gynecologist who ordered a laparoscopy to see what was going on. A year later I had a hysterectomy and spent five blissful years with no pain.

But then symptoms of the second not-yet-diagnosed condition appeared. This involved mild to severe muscle weakness and pain, brain fog to the point it took me almost twenty seconds to tell you what two plus two totaled. With really bad "episodes," I would go almost limp. Several times I had to have friends or neighbors help me to my house. I had a bad episode at a neurologist's office at the end of an appointment and sat listless in the lobby for an hour and a half because I couldn't drive home. The neurologist and his staff (except for one person behind the front desk) ignored me, despite the fact that I had the episode in the exam room in front of the doctor!

I've had more tests than I can count for this, but they all came back normal. Multiple doctors have told me to "come back if symptoms get worse." Oddly, potassium pills seem to help. I finally found a doctor willing to go into the trenches with me on this one when the third medical problem hit, ulcerative colitis.

UC may not be that unusual, but it took fifteen months from my first symptoms to my diagnosis. (Twelve from my first doctor's visit.) In that time I saw a family doctor, general surgeon, and gastroenterologist for a total of eight appointments and one colonoscopy, not counting multiple visits for blood tests and stool samples. For months, despite my insistent repetitions of my constantly worsening symptoms, the general surgeon said I had hemorrhoids. The colonoscopy changed his mind and he sent me to a gastroenterologist.

The gastroenterologist eventually diagnosed me with ulcerative colitis. But even then, at one point he said that my colon looked different than his other UC patients' colons. I could eat more foods. Stress didn't seem to affect my stomach. I was older than when most patients first experienced symptoms. My tests were all normal. The progress of my symptoms was almost a year, while for many patients it was months, sometimes weeks. Although he made an official diagnosis of UC and we are proceeding with treatment as such, there is still a "baffling" factor involved.

I have a great respect for all medical personnel. I greatly admire their years of schooling and interning, hard work and sacrifice to reach where they are in their careers. We would all be far worse without the medical community. And as I have a problem with bodily fluids and other people's pain, I cannot do what they do. Therefore, I admire them all the more.

But a lot of doctors cannot see beyond whatever box their medical world exists in. You've been in pain for years? It's all in your head. Your muscles go so weak you can't move for hours? Well, your tests are normal so you're fine. You have lots of blood and diarrhea coming out of your back end with intense cramping while sitting on the toilet? It's just hemorrhoids. 

I realize that doctors are not all-knowing. I know that many are doing the best they can with the resources and time allotted to them, which are often far from adequate. But for decades, I have often felt trapped inside my doctor's box of conclusions, which only includes so much. If my symptoms/problems fall outside the box, and this includes tests that come back normal, I'm out of luck.

Some would say, "Find a new doctor." But again, from my experience, most doctors operate (no pun intended) within a box, so you basically go from one box to another.

Someday our technology may advance to the point that medical professionals will have tools similar to Star Trek's medical tricorders that exactly pinpoint what's wrong within seconds. But until then, I fear many of us will spend a lot of time trapped in our doctors' boxes, no matter what good intentions our good doctors may have.

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© Colitis Senioritis 2023

Update June 2023: Maybe . . . Possibly . . . Hoping?

I had my "How are things are going" appointment with my G. I. doctor this week. It was decided that we will continue to wait and see how well or not-well my symptoms go with the Rinvoq. I'm tapering off of prednisone and this will be my last week. (Although most likely not my last round.) I hope the Rinvoq steps up, of course, because I want to feel and be better, but also because July is going to be a very busy month, which means it will be a very bad time for my symptoms to kick up again.

We've signed up for the new insurance via the Open Market, but haven't received a medical card yet, nor could we find anywhere on the website where to print off a temporary one. Hopefully this will all get figured out before my current supply of Rinvoq runs out.

The current round of prednisone that I am just finishing up has been odd. It hasn't worked as fantastically well as it has in the past. I don't know if this is because of the Rinvoq or not. Also, my eyes have been funky. I had some blurry eye problems when I first started taking prednisone in early 2021, but my dose was twice as much at that time than it is now, and the blurriness went away as I tapered the dose down. This time, even as I've lowered the prednisone dose every week, my eyes are just off. They feel really dry and about mid-afternoon get very tired. My far-sight is definitely more blurry. I guess this could be a side-effect of the Rinvoq and not the prednisone.

My stool is still middle-loose to loose. (Sigh.) It was doing better about a week ago, but then slid back. However, I have had a few signs that maybe . . . . maybe . . . the urgency might be getting better. Might? Maybe? Possibly? My doctor says the Rinvoq might not have reached it full benefits yet. We'll keep hoping! 

Next Update: August (No July) Only a Week Left

Previous Update: May, Health, Insurance, and Weather 

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An Alternate to Exercise: Virtual Reality Games (No Kidding.)

There used to be a time when if you had a medical condition, be it temporary or chronic, you were told to rest. Stay in bed or at least on the couch. Don't move around a lot. Women spent a week in the hospital after delivering a baby. You were supposed to "take it easy" long after recovering after a cold or flu.

But after the fitness awakening in the 1980s, the medical community realized the physical, emotional, and mental benefits of regular exercise. The many studies analyzed since then continue to confirm these realizations. If anything, we are still learning about the long-lasting and valuable effects of exercise. These effects are especially valuable for those with chronic illnesses. And for seniors, there is some evidence that regular exercise may stave off Alzheimer's and other dementia.

However . . . and this is a big however . . . exercise stinks, and I'm not just talking about the sweat. 

Most of us hate exercising, and I am right smack in that camp. I never "feel like" exercising and it is hard to get yourself to do something you don't feel like doing. I hate getting sweaty. I hate having to change into exercise clothes and back into regular clothes because I am going to get sweaty. I hate being out of breath. I hate the smell. I dread the utter boredom of it all and it is ALL boring to me. I hate the time it takes out of my day. And I particularly hate that, in order for it to do any good, exercise must be done AT LEAST multiple times a week. (Why can't I do it once and get it over with?)

A classic exercise question is, "What is the best exercise?" The truth is, that question gets asked because we are trying to figure out how to get the most exercise with the least amount of effort. But the classic answer to that question is, "Whatever exercise you will do." 

Which means there is not a "best" exercise.

Until Now

About a year ago a family member visited our home. They brought with them a new toy . . . a virtual realty (VR) gaming device. And they were anxious for me to try it out.

I am a dinosaur. I admit it. Don't ask me which one, I just know it is one of the slow ones. I take up technology with the speed of a sloth on tranquilizers.

So I wasn't exactly gung-ho about trying the VR device. It was with a deep, reluctant sigh and hidden eye roll that I placed that funny-looking thing on my head, expecting all the hype I'd heard to be highly and disappointingly over-rated.

On this particular system, you start out in a lobby area and I was immediately shocked by how immersive the surroundings were. Still, I didn't take to it right away. There was a bit of a learning curve and I easily could have said, "Never mind, I'm not doing this."

But I continued. And oh, am I ever so glad I did!

For the next year, when this family member visited, they would bring their VR device with them. Sometimes I used it, sometimes I didn't. But at the last visit, I played a shooting game that, after fifteen minutes, found myself breathing hard and sweating. (Drat the sweat!) The next day I told my husband I had no idea how much exercise you could get playing a video game!

We started talking about exercise. My husband has been trying to get me to exercise for a long time, especially since my colitis hit. I told him that if we had a VR device, I would probably use it everyday and get exercise that way. He said I should buy one. I was joking. He was not.

Now, these things cost a grundle of money, even the least expensive of them. And after you buy one, you are not done spending money. There are the games of course, but they're not too bad, especially if you wait for sales. There are also a number of free games to get you started. But the head strap, at least on the model we bought, is horrible. I used it a week and then promptly bought the head strap accessory that my family member had also purchased and which made a world of difference. 

The battery does not last very long so I also bought an extra battery, which I use often (and highly recommend). After a few months I realized I needed a case to safely store and transport the device and accessories, so I bought one of those, too.

A New Toy . . . or a New Piece of Exercise Equipment?

There are, of course, all kinds of games and non-games. The obvious exercise games are the sports games - tennis, baseball, basketball, ping pong, boxing, pickleball, etc. There are also apps that specifically target fitness - running, cycling, general workouts, etc. 

My personal preference is the tennis. I quite enjoy it, especially knowing that if I played tennis in the real world, I'd probably collapse in two minutes.

But I was surprised at the workout I get just playing regular games. There is a simple, free game called Bogo that is meant to help new players adjust to virtual reality. You interact with what I call a little dinosaur (though I'm not sure what creature it is) and the creature helps you with two mini-games. Now that I've figured out what I'm supposed to do, it amazes me how much those little games get me huffing and puffing. (The device company announced it is removing Bogo from their devices in March 2024. Sadness!)

There is a wizard game that I love (there are actually LOTS of wizard games) that sends me into a fortress/dungeon to fight what looks like rock robots with my magic (Cool!) Again, I was surprised at the workout the game gives me.

There is a flying game where I destroy rockets. This game is a little disorienting, but is great at helping me with my balance and makes me use my arms in an upward position.

Oh, and the shooting games are intense. 

Other APPS

There are other apps in the VR world. There are multiple apps to help with meditation and "mindfulness." There are how-to and learning apps of all kinds. I even ran across an app developed by a physical therapist to assist his shoulder patients with their rehabilitation. There are apps that take you to space, including the International Space Station and going on spacewalks. Some apps let you visit any tourist attraction in the world. There are nature apps where you can just sit in different scenes and watch nature go by. 

And new games and apps are constantly in development.

You need some space for the VR games, but not a lot and there are some that can be done sitting down. If you are moving your arms around, you will still get some exercise benefit.

I play the VR games six days a week, for about thirty to forty-five minutes. This does not mean that I wake up every morning anxious to get in my virtual reality exercise. Some days I groan at the thought of putting that thing on my head. But after only a minute or two, I am fully immersed and quickly forget about my grumblings, forgetting that I am exercising.

My VR device is keeping my weight under control, strengthening my arm, leg, neck, and back muscles, and improving my balance. It gets my heart, lungs, blood, and endorphins pumping. And all I'm doing is PLAYING GAMES! (And I don't have to change clothes.)

(One thing. I do not interact with real people in my VR device. My family talks about doing mini golf or some other activity together. I'll probably do that, but with strangers? No. Some VR users quite enjoy meeting new people through the metaverse, but I do not. If you are new to interacting with strangers through a virtual reality device, just be aware and careful, and absolutely review your settings for personal space options.)

Have I discovered the answer to that long-burning question of the universe, what is the best exercise?

No, but I'm thinking that the VR device and game developers might have.

Exercise and Chronic Disease: Get the Facts 

Exercising With Chronic Conditions 

Other Posts 

© Colitis Senioritis 2023

Update May 2023: Health, Insurance, and Weather

This month I upped my prednisone from two pills a day to two and a half pills a day. I started tapering down this morning. I'm feeling really good, as I usually do on prednisone, and going to the bathroom only once a day with an occasional twice a day, but my stool is still not all the way there. I'm not sure if it ever will be. But if it maintains at where it is now, I would be happy with that. I just wish the urgency would back down a little more. I am still concerned about whether I could do a long-term car trip where bathrooms may be far and few between.

We will be changing our health insurance this summer.  As we are years away from Medicare, it has been an interesting journey. My husband has been delving into that murky, confusing world and I am so grateful for his diligence. He's been trying to find an insurance that will accommodate my many expensive medicines. We will see where we land on this.

I'm still trying to figure out if weather affects my health. It certainly does for some who have other chronic autoimmune diseases, but ulcerative colitis? Not sure. The thing is, since about my mid-forties, my body does not feel good from about the third week of February through whenever spring finally overcomes that final winter hurdle, be that in April or June. During that time, my muscles ache (sometimes badly) my brain is foggy, I am exhausted, and no matter what I do, I am cold all the time, like my body can't handle the cold anymore. My body feels like it is tensed up for months. But then it warms up and THEN I start feeling better, and my body finally relaxes again. After going through this for years now (and when we lived in New England, for most of the year), my hypothesis is that for some reason, my body sees being cold as an invasion and tries "fighting" it off. By mid-February it has been fighting for so long it just gives up. My body goes, "I can't do this anymore," and it just stops trying to regulate my temperature. Once the weather warms up, my body goes back to normal. I had a harder time in New England because summer is shorter there and my body didn't have time to adjust.

So for this month's health update, between the prednisone and the weather, for right now, I am doing good.

Next Update: Maybe . . . Possibly . . . Hoping?

Previous Update: April, Fault on Both Sides - And No Bananas!

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Flare After Flare or One Really Long One?

Have I been having one flare after another or just one really long flare?

I looked up what the definition of "remission" is, and basically, it is an absence of symptoms related to a chronic condition or disease. Some defined remission as a partial disappearance of symptoms due to medications.

Okay, then. 

My first symptoms were in January of 2021. It has now been over 27 months and I have never had an absence of symptoms since then. Partial, yes. Full, no.

I have tried four different maintenance medications to no avail: Balsalazide, Sulfasalazine (terrific side-effects), Budesonide, and Mesalamine. (My G.I. doctor wants me to stay on Mesalamine in combination with other medicine we're trying, but alone it did nothing.) The only time I come close to full or almost-full remission is when I'm on prednisone. But of course, prednisone is not a maintenance medication because of short and long-term undesirable side-effects.

I've been on four rounds of prednisone (currently on fifth) and my symptoms always get better. But then I taper off, and BAM, there they are again, usually after four to six weeks of being off. Rinvoq seems to be the only medicine close to helping, but I'm getting ready to go on a lower "maintenance" dose, which is how it is done. However, I haven't gotten to a complete absence of symptoms yet, which is why I've been put back on the prednisone.

So that is why I ask . . . have I ever been in remission? Or in partial remission? Is "prednisone remission" a thing?

When someone asks me if I've been in remission, I honestly don't know how to answer them. My gut feeling is, well, no . . . not yet. But I have had bouts of being and feeling better.

I guess that means that I'm going forward with the thought that I haven't reached remission yet, but we're working on it, still in the stage of experimenting with various types of available medications and waiting upon the results.

Not the shortest answer, but probably the most accurate. 

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© Colitis Senioritis 2023

Update April 2023: Fault on Both Sides - And No Bananas!

I had my latest gastroenterologist appointment a few weeks ago.  Apparently Dr. Weber and I had a misunderstanding. He did want me to go on the Rinvoq, that part we were together on. But he wanted me to start back on the prednisone (which I did) and STAY on the prednisone (which I did not, but would have gladly done.) It was probably both of our faults, nevertheless, it was a frustrating miscommunication.

So he told me to wait a couple of weeks to see how my symptoms were and if necessary, start the prednisone again. My symptoms on Rinvoq are mostly better, but mostly is not getting me where I need to be. That is why I'm back on prednisone, hoping that will bring my condition more up, where hopefully the Rinvoq will maintain it. 

My biggest problems right now are the marginal consistency of my stool (about a 4-6 on the Bristol Stool Scale) and my urgency is about 45 seconds. I'm going to the bathroom about three times a day, which isn't bad, but my normal used to be once a day. I have been having some achy stomach pain after some bowel movements that lasts for a few hours. Better than it's been, but as I said, not quite there.

I've also decided to stop eating bananas for awhile. I was eating one a day with lunch, thinking it was an easy way to get some fruit into my body. But I had forgotten that before my colitis symptoms started, I ate a banana everyday, and started having loose stool. When I stopped the bananas, my stool returned to normal. I know bananas are supposed to help solidify things in that area, but it had the opposite effect on me. I think bananas might be adversely affecting my colon, so we'll take a break and see what happens.

And now we wait another month!

Next Update: May, Health, Insurance, and Weather

Previous Update: March, Progress, Sweet and Bitter

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Two Not-So Clear Questions About Pain

Question 1

"On a scale of one to ten, what is your pain?"

How often have you been asked this question by a healthcare professional? How confident were you that the person asking that question clearly understood your answer?

For this question to be accurate, there needs to be a defined base. For example, what pain number indicates that all you can do is lay down and not move? What number is your pain when you decide to head to the emergency room?

For me, the laying down and not moving pain is six. The "take me to the E.R. as fast as you can" pain is eight. Nine is, "I wish I would die." Level ten pain is, "Please kill me now!" 

But the pain number scale could be different for other people. I know a few people that wouldn't head to the emergency room until their pain level was ten. Does that mean they're just stubborn and should have gone to the hospital sooner? Does it mean that they have a higher tolerance for pain? Or does it mean that pain level numbers are open to interpretation?

Two people could be sitting in adjacent beds in the E.R. in the exact same pain, but when asked what level of pain they're experiencing, their answers could be very different.

So what, exactly, does it mean when someone says their pain level is five? Eight? Ten?

That is why I think the question, "On a scale of one to ten, what is your pain?"is impractical and needs to be reworked so patients' answers are understood more accurately.

Question 2

Then there is the question: "Is your pain a dull ache or a sharp pain?"

I absolutely acknowledge that this is a needed question that helps medical professionals narrow the possibilities of their patients' pain. However . . .

My own colitis pain journey does not come close to falling into only those two categories.  

These are descriptions of "outside the bathroom" pain I've experienced when my stomach was having trouble:

Creature with fingernails - This is when it feels like something is meandering its way through my intestines with its arms outstretched so its fingernails scrape along the sides as it moves. Sometimes it feels like those fingernails are barely touching and sometimes it feels like those fingernails are digging in with a vengeance. At those times I picture the creature with an evil grin on its face as it inflicts pain throughout my innards.

Bloating - You've probably experienced normal bloating. Your stomach feels a little uncomfortable and you may have trouble zipping up your pants. You may feel kind of blah. This is not that kind of bloating. This is where you feel like your stomach is going to explode. And it hurts like almighty heck. One of the times I experienced my worst, writhing pain (level 7.9 which is THIS close to "we're going to the hospital now!") was because of bloating.

Dull ache - Yes, I have that dull ache. But sometimes it is in one spot and sometimes it covers my entire stomach area. Sometimes it is barely there and sometimes it is quite painful, but still not a sharp pain.

Overall pain through the stomach region - This is hard to describe. It is not an ache. I was punched in the stomach once (childhood sibling fight) and that is what it feels like. Not the initial hit, but the pain you feel after a few minutes. Only it doesn't subside. It just hurts. 

I know that being a doctor or a patient can be frustrating. Often we communicate differently. The patient may say one thing but mean something else. The doctor or patient may say one thing but the other hears something different. Sometimes a patient holds something back or may just forget to mention something or not consider something important. Asking questions are the best way for two parties to learn and understand each other, which is vital in the patient/doctor relationship. I hope questions keep being asked, on both sides. But those questions need to have a common base to be understood accurately. 

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© Colitis Senioritis 2023

Update March 2023: Progress! Sweet and Bitter

I started taking the Rinvoq three weeks ago. And . . .

So far, so good! I've been off the prednisone for about five weeks, and this is the first time that I've been able to be off of that steroid for this long and not have gone backwards. Usually five weeks out from stopping prednisone I'm urgently going to the bathroom six to eight times a day, wearing diapers again, dealing with pain of various types and levels, having diarrhea bowel movements, and sometimes starting to bleed. This has happened even when on other medications (on top of taking mesalamine. I've never stopped taking mesalamine since I first started taking it mid-December, 2021.) None of this has happened on the Rinvoq.

It is bitter-sweet. Sweet, because we may have actually found a medication that works for me and is only one pill a day; bitter, because Rinvoq is one of the most expensive, if not the most expensive, colitis medication out there. And it is a brand new medication, which means it will be years before there is a hope of the price coming down.

Rinvoq is still a type of steroid, and it still suppresses a person's immune system, but my understanding is it's short-term side effects are not as bad as prednisone. Long-term side effects are unknown since this is such a new product. 

Nevertheless . . . it is progress! Progress without prednisone. Whether this is a little step or a giant leap remains to be seen. But for now, it is worth celebrating!

Oh, I almost forgot! I'm no longer wearing a mask in public! Yes!!! 

Next Update: April, Fault on Both Sides - And No Bananas!

Previous Update: February, A Surprise

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Update: February 2023: A Surprise

THIS was totally unexpected. I just found out . . . as in today . . . that the Rinvoq (see my January health update, link below) was approved. I don't know whether to type the word "approved" with an exclamation point (approved!), a question mark (approved?), or a common old period (approved.) In other words, I don't know whether to be excited, confused, or simply this is just another day in the changing, fluid, "what's next" world of colitis and things could be different tomorrow.

I've been approved for six months, but we have to switch our health insurance in a few months so that may throw the proverbial wrench into all of this. But at least the initial approval has come through.

My next step is to call the pharmacy and see if they've received the official prescription from my gastroenterology doctor, and if not, to call my doctor.

As for how I'm doing, I've tapered completely off the prednisone, and I'm usually good for about a month afterwards. I feel like I'm a revolving train platform where trains come and go and boxcars are continually being changed one for another; only I'm the platform with medications constantly coming and going.

But, as I said in my November, 2022 post about my colitis gratitude, I AM thankful for medications that help my life be more normal! And that is definitely an exclamation point!

Next update: March 2023, Progress! Sweet and Bitter

Previous update: January 2023, The "Step" Dragon Rears Its Ugly Head

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