If You Give an IBD Patient Some Prednisone

By: @sarizabeth/Girl Meets IBD

Parody of “If You Give a Mouse a Cookie” by Laura Numeroff.

---

If you give an IBD patient some prednisone, she’s going to ask for all the food in your kitchen. Just give it to her. She looks mad.

When you give her the food, she’ll probably ask for a drink. Great, now she has to pee again. When she’s finished, she’ll ask for some napkins to wipe up the sweat pouring off of her skin. (Night sweats? Day sweats? What’s the difference?)

Then she’ll want to look in a mirror to make sure she doesn’t have a chocolate milk mustache from the five gallons she just drank. But don’t let her. Because she has moon face. And a REAL mustache. So she’ll probably ask for a razor to shave it off. (Don’t leave her alone with the razor. Just trust us.)

When she’s finished shaving, she’ll decide she wants to clean the house. At midnight. Because she has energy now. She might get carried away and start repairing the roof. The neighbors won’t be happy. Oh, now she’s crying. Better get her off the ladder.

When she’s finally off the roof, she’ll probably want to take a nap, because it is 2 A.M. and all. But she can’t, because, you know, prednisone. Why is it so hot in this house!? Time to sleep naked. But don’t touch her. Stay over there. Or better yet, sleep on the floor tonight.

Maybe she’ll read a book to help her fall asleep. Uh-oh, she’s crying again. Take the book from her. Who knew chick lit could be so upsetting? NOW what is she doing? Oh, she’s writing a grocery list, because she ate all the food in the house yesterday. Then she’ll want to hang the list on the refrigerator so she doesn’t forget it. You’ll have to take the padlock off the kitchen door so she can get in there.

Looking at the refrigerator will remind her that she’s thirsty. So… you’ll offer her some tap water, because she already drank everything else in the house.

And chances are, if she asks you for a drink, she’s going to want some food to go with it. But it’s two in the—Never mind. She still looks pretty mad. Just go find her some food.

THE END

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

I was having a hard time yesterday. I feel that way most of the time, to some extent; I recently described it to my mom as feeling like I’m swimming through cement while everyone else walks past me. Yesterday, though, a combination of things just hit me at once. I had a meltdown and I didn’t know how to get out of it. So I turned to music, like I usually do. A familiar song came on.

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Three years ago, this song was very popular (and it still is– for good reason.) We sang it in church sometimes, and it was always on the radio. When I heard it last night, I was immediately taken back to three years ago. Could that be right? I looked it up. I was right. Three years ago today, I was baptized. On the ride home, this song came on.

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now

I won’t get into the full story here, but I was raised Christian and never quite meshed with my family’s preferred denomination. I bounced around a little, attending a youth group in high school and a local church in college, but nothing really stuck. Finally, years later and ten hours from where I grew up, a friend brought me to church with her. It was exactly what I needed.

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

It’s been a hard three years. I’ve been sick for most of it, to varying degrees, some years (months, weeks, hours, minutes) worse than others. I don’t live near the church I was baptized in anymore. I haven’t been inside a church in what feels like a long time for me. It’s hard to belong anywhere when you are sick. But I tell myself– it isn’t about that. It’s about more than just belonging to a place. I may feel like I never belong anywhere, but I always belong with God. I just need a reminder sometimes.

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

I don’t always know where my life is going to take me. The uncertainty of chronic illness will always be there, in the corners of my mind, reminding me that anything can happen. Remember what happened last time you tried? it says to me. Don’t make plans. You can’t trust. Anyone, anything– you can’t trust.

“But I can trust,” I say back. I can trust in Him, that He will be with me no matter what comes next. And I will trust.

I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine

Baseball was my first love.

I can’t even explain why I first started watching it. I never played baseball or softball, except once or twice in gym class. Basketball was the sport I loved to play, but baseball was the sport I loved to watch. My dad had the games on TV sometimes, not yet the devoted fan he is now, and one day I just started watching with him. I have never stopped watching.

For a sport I only started watching on a whim, baseball has brought so much to my life. It has given me a better relationship not only with my father, but also the other men in my family. Every year, the men in my extended family went on a “guys trip” to a Phillies game. Every year, of course, until my sister and I started crashing it. Some of my happiest memories have centered around baseball– the time my dad and I saw Kevin Millwood’s no-hitter in person, the phone call from my elated grandfather after the Phillies won the 2008 World Series, the yearly trips with my uncle who passed away last month.

Baseball has also carried me through some of the worst times in my life. As someone who has spent the better part of the last 5 years in states of health ranging from “I think I’m getting a fever” to “am I still going to be alive in the morning?”, I have countless memories of sleepless nights spent watching old highlights to distract myself from the pain. I remember watching games from my hospital bed as doctors snuck in to check the score, and even that time a nurse tried to convince my heavily medicated self that the Phillies had traded our mascot. There is good for every bad, and I can tell the story of being diagnosed on my birthday alongside the memory of a combined no-hitter on that date three years later. Hell, the first time my bag leaked in public was at Cooperstown– I deserve to be inducted into the IBD Hall of Fame for that one.

As Phillies pitchers and catchers report to spring training, the fact that their first official workout is on Valentine’s Day seems like no coincidence. On a day that’s all about love and overpriced chocolates, I look back on the little girl who first sat down to watch baseball all those years ago and never imagined all the joy (and maybe some frustration) it would bring to her life. Through good times and bad times, Gold Gloves and blown saves, I know I’ll always have my one true love.

December 23rd will be the first anniversary of my ileostomy. This time last year, I was preparing for my surgery– having my last meal, driving to Philadelphia, choking down antibiotics and Miralax in a hotel room and telling myself I would never have to go through this again. Some people I know seem to remember everything about their hospital stay after surgery, but not me. I remember everything in flashes, sometimes coming back to me at the oddest times. Some things I don’t want to remember. Maybe that’s why I don’t.

It hasn’t been the easiest year. My proctectomy wound FINALLY seems to be closed, but I still have some pain and occasional issues. I ended up with blood clots in my lungs and will be on medication for life because of it. I feel much better than I did prior to the surgery, but I don’t ever expect to feel like I did before I got IBD. I know better now.

Looking back, am I happy I made the choice to have surgery? Absolutely. There was nothing else I could have done at that point. I’m also very pleased with my permanent ostomy. I’m still glad I didn’t let myself get talked into a J-pouch. They’re great for many people, but it just wasn’t something I wanted. One of the things I’m finally getting better at is standing up for myself and doing what I want. This was exactly what I wanted, and one year later, I know it was the right decision for me.

I’m happy to be home for Christmas this year. Happy to be able to eat almost everything I want. Happy to not have to swallow 20+ pills a day (I’m down to 5.) And happy I have so many wonderful friends in the IBD and chronic illness communities to share my happiness with.

Happy holidays, everyone!

–Sarah

I don’t hate doctors.

I think that’s an important statement to make, especially for those who know what my experiences with doctors have been like. For the uninitiated, I saw seven different GI doctors (excluding ones I encountered while hospitalized) between my diagnosis of ulcerative colitis and my surgery four years later. Some of this was due to moving multiple times. Quite a bit of it was because I was not receiving good medical care. And those are just the GI doctors I saw. Overall, I have had many experiences with doctors over the past few years, and can honestly say that my experiences have left me with a distrust of and even a fear of doctors.

It’s gotten to the point where I know my fears are becoming a problem. I’ve had some unusual health issues lately and scheduled an appointment with my primary care doctor. Now, this doctor has been in my life on and off (mostly on) since I was 15 years old. She has a family member with UC and has always understood how challenging it is. She knows all about my ongoing health issues and my confusing medical history. Yet I found myself thinking things like “What if she thinks I’m making it up?” and “There’s no point. No one can help me anyway.” I realized that I have internally come to the conclusion that doctors will not be able to help me and, more importantly, will not want to help me. Even though I knew I needed help from the one doctor who has always helped me, I was still afraid.

My fears turned out to be unfounded– she diagnosed one issue immediately and sent me for several tests for the others. I still feel bad that I ever felt that way, though. When none of the tests showed a reason for my other issues, I immediately thought again, “Well, now she’ll think I’m lying.” In reality, I have another appointment to see her this week, and I know she’ll continue working to find out what is wrong with me. But I do understand why I feel this way. There have been many, many times when I have been brushed off, ignored, or even lied to by medical staff. One time is bad enough, but when it happens again and again, it builds up and makes even routine medical experiences feel traumatizing.

My PCP has always been honest with me. She has always tried to help me. I have to admit, though, that a part of me is waiting for the day when I become too complicated for her and she stops believing me. That has happened to me before with other doctors. If I hadn’t been treated that way previously, I don’t even know if it would occur to me that it could happen. I feel like it’s unfair for me to even be thinking these things about a doctor who has been so kind to me. I wish doctors understood that every time they ignore a patient, minimize symptoms, or invalidate experiences, they are setting the patient up for a lifetime of not trusting medical staff.

Have you ever had an experience like this? Share your story in the comments.

Sarah

***Not every medical encounter I’ve had over the past few years has been negative– many were fine and some were even good. But I have also had many bad experiences, and those particular experiences are what I am writing about here.***

Today is my five year anniversary of being diagnosed with IBD. It’s also my 28th birthday. This is the order I remember them in.

I made it this far. With all of the health problems I’ve had in the past year, I joked more than once that I was going to join the 27 club. I probably wasn’t artistically gifted enough. In all seriousness, though, I almost didn’t make it past April. If I had gone to sleep instead of going to the hospital, I probably wouldn’t be here right now. I still don’t know how I feel about that.

It’s tough to have such a combination of events on the same day. Reminders of a beginning and an end. Your birthday says: Congratulations, you lived another year. But after diagnosis, always that reminder: you lived, but for what purpose? You’re here, but should you be?

I’m certainly not suggesting that chronically ill people have no purpose, or should not be here. Everyone has a purpose. I just haven’t found mine yet. Every time I think I’ve finally got it, I lose it again, washed away as quickly as if it was never there at all. And in turn, I was never there at all.

It’s strange to get older without anything to look forward to. Even stranger when you don’t know who you are anymore. I don’t know who I am anymore. Sometimes I feel that there is nothing on the inside, no personality, no soul. I think that’s part of why I get so upset by how I look on the outside. That’s all I am anymore, and it isn’t enough. I no longer recognize any aspect of myself. I no longer have hope that things will get better in this new year, because they can’t get worse. If chronic illness has taught me nothing else, it is that things can always get worse.

But, 28, I’m willing to be wrong.

I’ve had a hard time writing here lately. I’ve spent the past several months alternating between thinking about my medical issues and desperately trying to block them out. When I’m in a good mood, I don’t want to write anything that will lead to unhappiness. When I’m upset, I don’t want to think about anything that will make me feel even worse. So that explains the relative silence of the past few months.

I just finished a four-week yoga series. It was the first time I had done yoga since surgery. It went pretty well, after the first week when we did a lot of poses that involved being flat on my stomach. I almost didn’t go back, but thankfully the rest of the series didn’t include many more poses like that. It wasn’t easy, but I’m glad that I did it. Although the physical moves were hard at times, one of the most difficult things for me was turning off my thoughts and focusing on my breathing. It’s hard for me to give myself over to the calmness and quiet. In other areas of life, I usually try to distract myself as loudly as possible– through humor, music, conversation about something else, anything else. That’s my way of avoiding things I don’t want to deal with, or thoughts I don’t want to have. But during yoga, I don’t have any of those options. It’s just me and the mat.

I’m trying not to see thinking as a bad thing anymore. There are so many things I’ve been afraid to give even a moment of reflection, as if just one thought could immediately open the floodgates and put me back into the places I’ve tried to avoid. That obviously isn’t the best way to live, but when years of illness have forced you into survival mode, it’s hard to come up with a better way. Honestly, I think part of the reason I’m having trouble expressing my feelings is because I’ve tried so hard to not have feelings at all. It’s safer, right?

I had a doctor’s appointment a few weeks ago where my PCP asked me some questions about how things were going post-surgery and blood clots. I told her about some things that are going on in my life that I haven’t told almost anyone else. These things have the potential to be positive, but so were the other hundred things that got screwed up by my health problems. This is why I no longer disclose information about my life unless I absolutely have to. “It makes sense,” she said. “You’ve been disappointed so many times before.” It’s safer to just lie or keep my mouth shut. It’s safer to not want anything at all.

So… Thinking. Not a frightening concept for most people. Maybe someday, it won’t be for me.

 

(title from http://tinyurl.com/htqpp3m)

The past couple of weeks have found me with some much needed time away from social media. I’ve taken short breaks in the past, but this was almost a total separation. I debated for a few days over whether or not I wanted to delete all of my social media accounts and just be done with it. Instead, I gave myself some time to think about it and did some fun things like going to a baseball game and visiting my friend’s new baby. Those might not mean much to a regular person, but for a sick person who hasn’t had much fun in the past year, they were huge.

So… I’m now back in some ways, but not others. I’m posting here. I have used Twitter some, but only to update an account I help run (not my personal account.) I’ve popped up in some other places.

Social media has really been equal parts blessing and curse since I got sick. I started out on a message board, which was good in some ways (basic information, not feeling alone) and terrible in others (bad advice and a whole lot of negativity.) After several months on that, I left IBD-related social media for a few years. I reappeared in late 2014, when I stumbled across a few IBD Twitter pages and the rest was history.

Most of my experiences on Twitter have been positive. I’ve made some lifelong friends and got involved with Girls With Guts. I never would have had the courage to go on a retreat across the country while flaring if I hadn’t already known some of the women. I’ve met several of the people I know from Twitter in real life, and one even came to visit me in the hospital. All of those experiences brought me a lot of happiness during a time when I wasn’t getting it from anywhere else.

Honestly, I think any time a bunch of sick people get together (whether online, through an in-person support group, etc), there is going to be conflict. It won’t be all the time, and it won’t be from everyone, but it will still be there. It’s hard to deal with drama at any time, but it’s harder when everyone involved is sick. Many of us only have each other to talk to about our diseases, whether because we choose not to share information with people in our everyday lives or because others are not available. Because of this, drama tends to get amplified. What might be brushed off as a minor slight to a healthy person can feel pretty major to us.

Keeping all of that in mind, I think it’s a good idea for me to pull back from chronic illness-related social media. Let’s face it: putting yourself out there to help others and repeatedly getting stomped on is not a good feeling for anyone. If that means no longer getting personally involved with others, well, that’s sad, but it might be necessary. “No good deed goes unpunished” has never felt so true.

I’m still here, is what I am trying to say. But maybe not in the ways that I used to be.

“You don’t always have to say what’s going on in your head, Sarah.”

That was my mom’s endless refrain throughout most of my childhood, occasionally reappearing in adult life. She was more diplomatic than my sister, who would just yell, “No one cares, Sarah!” I wasn’t easily discouraged. I loved to talk, about anything and everything. Everything was exciting to me, whether it was the best thing in life or the worst thing ever, and I wanted everyone to know about it.

Then I got sick.

Before I was even diagnosed with IBD, I grew quieter. There were times when I would just sit silently, afraid to say anything or even move for fear that I would feel worse. I lost most of my interests and had nothing to talk about. I lost relationships and didn’t have anyone to talk to. I became afraid of everything for the first time in my life.

For the first time in my life, I had nothing to say.

I began to dread conversation. I stopped going out. I avoided the rare phone calls and texts when they did come. What did I have to say? I had nothing to add to a typical conversation. “What do you do?” “I’m sick.” “Are you seeing anyone?” “Not anymore.” “How are you?” “I’m fine.” I always said I was fine, because the alternative was too much to explain.

Even now, after years of being sick and not being quite as sick and being sick again, I am quiet. You’d never know it from my internet presence, but I’m fairly reserved in real life. It’s like living for a hundred years and then getting thrown back into your twenties– how can you explain it to people? How can you pretend to be a typical twenty-something after all that you have seen and experienced?

Every so often, bits and pieces of my old self will burst out. I’ll squeal with excitement over something. I’ll tell a story too good to keep to myself. I think for a few minutes, “This is what I used to be like.” But it doesn’t last. I always fall back into silence. Silence is who I am now.

But I wasn’t always quiet.

One of the most difficult things about being chronically ill is that you never know when something new could pop up. In my case, that happened last week, when I went to the emergency room with what I thought was a chest infection. To make a long story short, it wasn’t. I was diagnosed with pulmonary emboli in both lungs and an infarction in my right lung. (Yep, the thing that Dr. House had, only mine is in my lung.) So I quickly emerged into a new world of anticoagulants and doctors with specialties I hadn’t even heard of before.

Needless to say, I’m not in a very good place emotionally right now. I was slowly recovering from the last surgery, and now I feel like I’ve been knocked back about fifty yards. I’m also scared that I’ll wind up with something else; if this could happen out of the blue, what else could go wrong? There’s no definitive answer as to why this happened; blood tests have been mostly inconclusive, and would need to be repeated later on to make sure they’re right. It could be ulcerative colitis related, it could be surgery related, it could just be bad luck. No one knows.

I may eventually post about my hospital stay, but I’m honestly not sure I want to think about it. This whole thing is bringing back the memories of being diagnosed with IBD… fear, confusion, disbelief. Having a new diagnosis is like going through everything all over again. I don’t know if writing about it would help or make things worse. For now, I’m just going to leave it at this: I may not be around much in the next few weeks while I navigate this new situation.