Recently, a close friend/relative was diagnosed with a chronic disease. He’s pretty miserable.
It’s a hard thing to accept, that diagnosis. To find out that you have something nasty that you don’t want, and it’ll always be with you. Gee Willikers, who the hell do you thank for that?
Still, having had a chronic disease for forty years, I’ve learned a thing or two that I can pass along.
I’ve learned that basically, it’s a frog’s life. Yup. A while ago I figured out that living life with a chronic disease simply means you’re a frog.
You don’t look like a frog!
You see, most of the time, life is normal. You hang out in the pond with your family and friends. You eat bugs which is gross, of course. But still, life is good most of the time.
This pond has an all you can eat buffet!
But naturally, life isn’t quite that easy. It isn’t quite that easy if you don’t have health problems. But if you do, well, you have to pay attention to what happens to you. The Devil is in the details. Actually, the devil is in the damn symptoms you probably think aren’t worth bothering with.
You have to watch out for pot. Pots. You have to watch out for pots.
Huh?
Oh surely you’ve heard about frogs and pots!
No? Let me rekindle that image.
Rumor has it* that sometimes someone (an asshole no doubt) puts a poor, unsuspecting frog into a pot of boiling water. The frog (being smarter than the average bear) immediately jumps out. Of course s/he does! It’s painful! If s/he doesn’t, well, we won’t need to worry about that frog’s gender much longer.
Shit! THAT HURTS!
Sometimes with a chronic illness, you get really sick. It’s dramatic, debilitating. It sucks. And generally, the reaction is to JUMP!
Jump! To the phone to call the doctor. Jump! To call the nurse. Jump! To call my husband. Jump! To scream to heaven for my mother (because, in spite of the fact that she is in another realm, when something hurts, I want Mooooooooooooooom!). Jump! To call my sympathetic friends.
Hell, I’ll call whoever will come and help me. Because the water in that pot is too damn hot; I must react. Whatever it takes. I then follow the advice I’m given, and feel better. Much better.
Sadly, it’s not always easy being green. Or having a chronic disease.
You see, sometimes, the frog ends up in a pot of cool, refreshing water. And then, dammit, that same asshole turns on the heat. The results ain’t pretty.
Shit
Twice in the past few years, I’ve found myself hanging out in that stupid damn pot after someone turned on the gas (sometimes literally). In retrospect, it seems idiotic of me.. Me! The expert patient, with 40 years of practice! It seems so obvious. But day to day, really, it is not at all clear that the water I’m in has heated up so much that, well, getting out just doesn’t seem worth the effort.
Because, you see, when you have a chronic illness, there are little things that creep up, little pains that are really nothing. Nothing at all. Certainly nothing to complain about. Nothing to worry about. Nothing to mention to that person on the other side of the bed.
Just as surely, it’s nothing worth calling the doctor about. Nothing even worth remembering during those routine visits. Nope, it’s all good.
But then suddenly, unexpectedly, you realize that that little ache, that pain that started off so mild, that has stayed with you and built up. Day by day. Suddenly it becomes unbearable.
So, I thought of what advice I should give to my poor depressed friend.
Pay attention to your symptoms. If you have an acute problem, jump out of the pot. Call your doctor. Duh!
Pay attention to your symptoms. If something little seems hardly worth mentioning – JUMP ANYWAY!!! JUMP OUT OF THE DAMN POT!
More specifically, call your doctor. Let him or her know what is happening. SQUEAK! I know that’s what mice do, but I’m sure frogs squeak too,when they have to, too. It may be nothing, in fact, it probably is. But mention it anyway. And if it is something, there may be help closer to hand than you think.
The two times I stayed in the pot?
The first time I didn’t want to go on a medicine my doctor thought would help me; I read too much. The day after my first dose of that medication I was nearly pain free. Gradually, I had been barely able to walk, sit or stand. I have a good doctor but I didn’t want to follow her advice.
The second time, I was somewhat less stupid. I was away, and developed a painful skin condition, that started up slowly. It was no big deal. NBD at all. Until, after a couple of weeks, it was. When I talked to my doctor, she made a simple recommendation. I followed it and the pain went away.
I’ve lived with Crohn’s for 40+ years. And you know what I’ve learned? Find a good doctor, and listen to him or her. Then just float along as best you can.
Because except for eating bugs, a frog’s life is pretty damn good.
* When I was looking this up on my bible, Wikipedia, I learned that this whole “frog in the pot” thing may not be precisely true. It may not be that a frog will just hang out until it dies while the water heats up. Fuck you Wikipedia. Way to ruin a good metaphor. Go eat bugs, Wikipedia.
All images are from Google. I leap in your general direction, Google images!
FiftyFourandAHalf 
I’m still not getting on the prednisone ship yet…lol I think I’m doing well getting on the methotrexate ship…
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So very well-put, Elyse. I don’t know if I ever mentioned but mamasaur suffers from fibromyalgia. This helps put words on something that is hard to put words on. Thank you. *hugs*
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Ouch for Mamasaur. None of the chronic diseases are any fun (nor are the other ones, come to think of it). But fibromyalgia is especially hard because so many folks don’t believe it’s real. It’s bad enough to feel awful without the doubt. I wish her well.
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Hello Elyse, we met at a dinosaur party a while ago (you commented just before me). My name is Vernette…and I’m happy I followed Rara’s advice and hopped on over here (see what I did there) to say hello. Great frog analogy…so happy my favourite colour these days is green 😀
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Hi Vernette! Nice to meet you! Thanks for your nice comment. Isn’t it great to have Rara back?
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It is awesome to have her back 😀
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This was so entertaining, Elyse. What a great analogy! I’ve never eaten frog legs and I never would. Just wanted to make that clear for some reason…
Glad you can add some levity to your situation, which has to be really rough to live with.
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You don’t look like a frog boiler, Kelly. I would never accuse you of that!
I’m glad you like the analogy. It hadn’t occured to me until my friend started having problems. I was trying to think of something to make him realize it won’t always be as bad as it is, and that he needs to act when necessary (he hates doctors … a very reluctant patient). I think this fits the bill though. Most of the time, those of use with these diseases are just swimming along in the pond.
My situation is actually pretty good right now. I only write about it when I am not miserable. I hate feeling sorry for myself and, with some exeptions, try not to!
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Okay so what does a frog boiler look like?!! Sorry, had to ask! lol
Well I’m glad you’re feeling good at the moment. That was a really inspirational piece and I’m sure it helped your friend. My college roommate, Freshman year, had Crohn’s and battled with flares. She couldn’t drink beer, so she smoked pot…and not for medicinal purposes! So I feel for you, because I remember how bad she would feel at times.
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Well I won’t pretend that it doesn’t suck having Crohn’s. But I do kind of live in the moment. My biggest problem with it (well ONE of them, anyway) is never knowing when it’s going to be a problem. C’est la vie.
Thanks for your kind words, Kelly!
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Anytime, Elyse 🙂
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Excellent analogy.
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Thanks, Cutter! Hope you’re well!
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I like to just randomly go to my doctor and make her look at my pot… just to see if it look warm…
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Funny, Art. I thought a guy like you would go to the doctor to GET pot. My bad.
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uh, no, never needed to do that…
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What I am learning is to savor very good moment. When Lupus or my lungs develop another disease. I say I’m still here and will try not to miss s second of my life.
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Absolutely the way to look at it, Heard. We do need to have that attitude, don’t we. And we have to remember that the good moments come — during the bad ones, it’s so easy to forget that!
Stay well.
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Everyone has something (body crapping out-wise), right? It’s true, though…having to redefine yourself as a person with (fill in the blank of your chronic condition) is a struggle on top of the pain and suffering of the chronic condition.
Your advise is the same as mine, only said differently. I say, make friends with the condition (or don’t fight with it). Sure, do what you can to be well and healthy within your new parameters of life, but don’t pretend that the condition doesn’t affect you (or, as you would say, staying in the pot no matter how hot it gets). As for Wikipedia, they don’t always get it right… 😉
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Actually, Lorna, I think that is a big part of it — accepting that you’ve got it is really hard. You can’t believe it. You’re angry. It’s so bloody unfair…
Like you, i adjusted a long time ago. Most of the time 😉
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Metaphor good, Crohn’s bad. I can sympathize. At age 44 I had a slipped disc. Standard treatment was bedrest. They finally did a spinal fluid scan – total blockage. Surgery. Permanent nerve damage. I never ran again. Some plumbing also affected. 34 years later, I am enjoying life and grateful for general good health otherwise. No alzheimer’s in me or wife. I just read in today’s obits of a woman who died from it at 54. Bummer.
I know something’s gaining on me, but like Satchel Page, I avoid looking back. Keep on truckin’, Elyse. You’re a plucky lady! 🙂
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Roseann Roseanna Danawas right, Jim. It’s always something. Cheers to it not being Alzheimer’s, though. Isn’t it odd the things we appreciate as time goes by?
Crohn’s sucks, to be sure. But right now I am doing fine. I never write about it whenI’m miserable!
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Intrigued by your hint about the boiling frogs story and Wikipedia, I looked it up. Seems contemporary authorities doubt the story. On the other hand, in 1869, Friedrich Goltz demonstrated that a frog will remain in slowly heated water if it’s HAD ITS BRAIN REMOVED!
While I would hesitate to pick a fight with an eminent German physiologist, it does occur to me that I might also be inclined to stay in boiling water (or in an acid both or a lava shower) if I’d HAD MY BRAIN REMOVED.
Just thought I’d mention it.
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Now that’s an intriguing bit of research! there are many things I would do if I’d had my brain removed. One of them is DIE! I imagine this sadist kept just enough of the frog’s brain to regulate breathing, etc.
I will admit, I liked my analogy too much to do much research.
And I am reluctant to research frogs in particular. In high school, I had to disect one in biology. Mine had a huge aneurism-like thing in of all places, its intestinal tract. It was weeks later that I started having symptoms. (Revenge of the Frog!) I hadn’t remembered that until just now.
Welcome to my blog!
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It does seem like one of the truly pointless discoveries in history, doesn’t it? Certainly not worth the life of some poor little frog.
Thank you for the welcome, by the way!
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This was a perfect way of approaching things. I have a friend right now going through something similar and I am going to force him to read this, even if I have to hold him down and read it to him. I have become so attuned to my body over the years of my ‘recovery’ I don’t leave things to chance anymore, I surely did in the beginning though. I certainly ignored warnings, ignored symptoms in favor of pretending they weren’t signs. Now, instead of getting mad I simply talk to my doctors and figure out what is going on, why there is something new and what to do about it.
Your frog analogy, perfect.
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Thanks Val. Good luck to your friend. As we both know from experience, it’s a challenging road. And every person/patient is different. My symptoms are hard to figure out — there never seems to be a pattern. Oh well. And after 40 years even I don’t want to hear me complain!
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What great advice. You have to be in tune with yourself and not afraid to speak up. Also a great metaphor, and I don’t care what Wikipedia says. Everybody knows that frog story is true.
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Everybody does know that story is true, right? And everybody questions Wikipedia, right? Ergo, they must be wrong, right? In this case, I’m pretty sure two wrongs make a right. Or something!
When I was young, I was truly afraid to speak up. Now, that’s not at all the case (just in case you hadn’t noticed!). Now I can’t always tell what I need to complain about. At this point in my disease progression, it impacts a lot of my body symptoms — so I never know what’s related and what just needs Tylenol! And whenever I do complain, I get sent to another specialist.
Still, I need to be better at listening to my own advice and JUMP!
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Pingback: Jump out of the damn pot | The Monster in Your Closet
Wow. I was the personal scribe for a prominent surgeon who specialized in working with patients with Crohn’s and other intestinal disorders. Seeing what his patients had to go through just in his office made me appreciate my gastric health all the more. I wish the outcome were different for you, Elyse.
I personally love your frog analogy and think it applies to mental illness too, namely my chronic depression. Sometimes somebody turns up the heat, and the frog in my brain does not think to jump out of the pot. You are right when you said denial is strong when it comes to health issues. It took me a long time to summon up the courage to ask my therapist if she thought I had a mental disability because, deep down, I knew the answer.
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It wasn’t Dr. Hoover, was it? Herbert. He did mine in1982/3.
I think the frog analogy applies to depression and other mental health issues. I just worry about using “jump” in that way, though.
Denial for me was helped along by the fact that when I was newly diagnosed, the theory was that it was psychiatrically based. Call in my head. That made me figure I could relax away my bloody stools, etc. it still burns me up.
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I remember a Hoover cited in numerous articles cited in publications regarding Crohn’s, but I never worked directly with a Dr. Hoover. This was Dr. Fischer.
It never occurred to me about the “jump” being used that way because you are jumping out of a dangerous situation. I see your point though.
Really? I didn’t realize the history of the ailment was initially a psychosomatic diagnosis. Everything I saw revolved around the tangible treatment of Crohn’s, that was my natural assumption about it. That makes it so much worse. Gah, I am so sorry!
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Hoover was at hopkins, where I had my surgery. It was brand-spankin’ new back then, only done at Hopkins and Mayo.
I doubt that psycho-somatic was the initial reason. Probably thought the devil brought it on back in the day (I’m not sure that is incorrect, even now). It was frustrating, I’ve tried writing about it a few times, but it still makes me too angry, and thus I would destroy my image! My (late) eldest sister was a nurse who trained during that era. She suffered from severe depression. She was always convinced that her psychiatric problems were in her head, MY psychiatric problems were in my butt. I could still throttle her for that!
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Ah, family. I know how they can harm more than help, and there are things I can’t write about without steam coming out of my ears. Understood.
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I needed to open an envelope, but didn’t have a letter opener. I asked a frog what I should do. It said “Rip it!”
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THAT frog, I would have boiled it.
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Skin condition? You mean the skin that feels cold, smooth, and slippery? 🙂
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And warty. You forgot warty.
Sadly, mine was dry and cracked, swollen and inflamed. Slippery and cool would have been delightful.
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ribbit.
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It’s not easy being green.
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It must be pretty hard to deal with a chronic disease, and try to figure out if some symptom or another is really caused by the disease, or if it’s something else. I like your analogy to a frog. I guess that, like a frog, you have to learn when to jump before you croak.
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Oh how I wish I’d thought of that line!
Mostly, I try to NOT think about being sick. Because it is really boring, and nobody wants to listen to a complainer. But you do learn a few tricks with practice. Fortunately for the world, practicing Crohn’s disease will not lead to a recital.
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Sage advice if we remember to follow in the moment. Chronic is an awful word. It means always. I had a friend with metastatic breast cancer….for 14 years. (Yes women are still dying of breast cancer!). She was amazing. Sometimes she had hair and sometimes she didn’t. She worked hard to stay healthy (organic diet, green tea, all that) until she ran through all the treatments. I remember what she told me. She said, “We are all dying. I just know what I will die from and you don’t. None of us know when.” In the course of her treatment we lost other friends unexpectedly which reinforced what she told me. Somehow though, I like the “unexpectedly” better than the chronic. So sorry for your friend.
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She had it for 14 years? My word — I have read about it but thought the life expectancy was much less.
Her comment make a lot of sense. And really, it’s quite comforting.
My friend is pretty tough. He will be fine. But as with all diseases, you feel very much alone. I wanted to let him know he isn’t.
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I had another friend with it for 11 years. They kept getting chemo but each drug eventually becomes ineffective. When they run out of drugs the disease runs it’s course. It is lonely. Some women become bitter because of all the pink ribbon stuff. A lot of money goes to prevention and detection rather than metastatic. I had Stage 1 cancer (which in the scale of cancers is nothing) and I was terrified. Somehow I found “others” who were very comforting. Perhaps your friend could do that.
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Yes, Kate. Telling him to look for others is a very good idea. Because no matter what we have, it always feels like we’re the only one. I do find that the internet, though, is filled with the folks who haven’t gotten relief, or who are preaching non-traditional medicines. I’ve personally had pretty good luck with following my doctor and doing drugs, so I am more skeptical of alternative treatments.
Your poor friend(s). I got a diagnosis of the big C twice — once was a mis-diagnosis of Stage IV ovarian cancer (Put your things in order. NOW) That was terrifying; less so because it was wrong. But I also got a diagnosis of Stage 0 melanoma. And even knowing it was actually pre-cancer was scary. I hope you’re doing well now, and paying attention.
It is good that we put $ into prevention. But you’re right — it must be so very hard to have an illness that is similar to one that gets a lot of attention, while knowing that you personally won’t get any benefit from the research.
I’ve been thinking of your comment all day. Sorry it took me so long to get around to answering it!
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Stage IV and a mistake! OMG! No words.
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It was awful. Still, I’d prefer the mistake than having died 10 years ago!
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I like frogs. I never realized I am one. Been in that pot twice – hopefully, never again.
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Kick those legs!
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Most of us take our health for granted. Those who live with chronic disease don’t get that luxury. Thank you for showing us what that constant reminder is like. And kudos to you for being able to navigate it with a sense of humor. Wonderful post.
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Thanks, Carrie.
I will admit that it’s easier joking about poop than about other chronic diseases. But frankly, there isn’t much choice. Most of the time, I can manage, can find the funny. But when I find myself in that slowly heating pot, that’s when it’s hardest for me. Because it seems like I’ve gone to a whole new level of disease, when really, a bit of skin cream will work wonders. Who knew? Well, the doctor did. But I didn’t think to mention it, I kept putting up with it. Oy vey!
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Well, every misstep is a learning step. But not so much fun when it’s your health that’s the staircase. (And with that horrible metaphor I’m outta here. Sorry I made you suffer it.)
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It’s not as bad as it sounds Carrie. You see, after a while you get an appreciation for just how far up the staircase you have come and when the occasional misstep or mistake takes you down a few steps, you still get to rejoice at your height on the staircase, with the sure knowledge that you can regain lost steps and continue upwards. Without the illness, every backwards step seems to take one back to zero as we don’t easily recognize how much we have grown and learned as we progressed through life – we don’t easily see the staircase that is obvious when you have a long-term illness. 🙂
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I agree with that completely. Sometimes I look at the things my husband worries about and shake my head.
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Yeah, sometimes it is hard to keep my mouth shut. I heard a woman say one day that it was the worst day of her life because she had nicked her leg while shaving and had to put a band-aid on it. I had to almost duct tape my mouth shut to keep from a snide comment. 😀
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Often as I’m shaking my head at my husband for something that trivial, I have to shake it at myself too. I actually thank God that he DOESN’T have a chronic illness!
I’m not sure I would have been able to stop myself from commenting. At least to say, good thing it wasn’t the femoral artery!
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Well said. Thank you!
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A good post for reaching others with Crohn’s … your version of a PSA. i liked your metaphor, but at the end, you stole the song I was going to use.
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Hi Frank. (Yay, I finally got you! Now I can move on with my weekend. 🙂 )
Frank and I have been playing comment tag, Elyse. In case you’re wondering what that was about.
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Good morning, Carrie! 🙂
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You children go ahead and play. Don’t mind me.
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Haha, good. But let us know if we get too rowdy.
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“Somebody’s gonna end up crying,” — that’s what my mother always said. And she was right. It was me.
Probably the same here!
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I can already feel the tears forming…
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Sometimes, Frank, I like to get to the song first! I did also think of using this one:
Yes, it is my PSA: JUMP! Which does have different (and unfortunate) connotations with different diseases.
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Good one for this post … but going with the frog theme worked.
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Well, I still thought it was a great metaphor! As I have found in the clinic, folklore often speaks louder than science so screw Wikipedia and any quoted scientific studies. 🙂
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I’m glad. I always wonder what you and Carrie will say when I go into medical areas! You could put this poster up in your waiting room: http://asmybodyattacksitself.com/wp-content/uploads/2013/11/symptom-creep.png
Or maybe not! I’m going to add it into the post!
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I am always astounded by what people will put up with before they come and see me, even when they already know what is wrong because they have a diagnosis. When it sneaks up on you in small increments, it is easier to ignore. (Maybe ignore is not the right word you get my drift.)
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Denial is strong when it comes to health issues. You just don’t want to believe it is happening. And then it happens again, and it’s even harder to accept. I was diagnosed (well, incorrectly with colitis) very young. It didn’t occur to me that it was a life sentence, and I wouldn’t have believed it anyway. I was invincible, right?
It’s the little things that turn into big things though, that nearly break my spirit. And I never see them coming.
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I am so sorry that you, and anyone else, suffers. ((Hugs))
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That’s why you’re a doctor!
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That was very moving and informative the way you told that story. It is all in the way you handle things.
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It really is, but you know, you really can’t always tell. The symptoms you’ve had, well, you’ve generally learned how to react. It’s the new ones (and there are always new ones) that are different that bite you. In my case, in the derriere.
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A bigger question surfaced while reading this post. Why do I know all of the words to Kermit’s hit song, yet forgot toothpaste at the store yesterday?
Great post Elyse! I think we can all relate on some level.
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You know all the words because you’re a mom. Another chronic condition!
We can relate because, really, we’ve all eaten a bug or two!
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Great post, and so very true.
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Thanks! And no frogs were harmed in the writing of this post.
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So true. And frogs don’t bother with paleo.
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The paleo diet would probably finish me off! Nuts and berries? Oops, gotta go …
Hope you’re doing well!
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Nuts and lentils make me vomit. I’m good. Should do a post but, y’know, work. (How good is that.) You keep well and away from berries.
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So glad you’re doing well! I am knocking hard on wood as I type.
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Where the heck were you last month when my pot started heating up while Momma Bear was on vacation? She got back and the first thing she said was: “did you take your medication?”
“Uh…medication? uh…sure!” as I went to find it. I’d been sick for three weeks. Two days later I was practically back to normal.
And that, boys and girls, is why you should never leave daddy home alone…
😛
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Oh dear. I think I was swimming on the other side of the pond!
I’m pretty consistent with medication adherence. I have reminders on my phone, and routines. I get messed up when I am away, and on weekends I sometimes forget. But, really, I can tell the difference. I feel better when I take the meds. So I take the meds!
Have you tried one of those electronic medicine boxes? That might help. http://www.walgreens.com/store/c/walgreens-alarm-clock-pill-box/ID=prod6181255-product
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For my regular meds, I have a system. But my gastritis, which mimics and yet is not Crohn’s disease, only flairs up a couple of times a year. Since I suffer from GERD constantly, it’s hard to determine the inital stage of the more serious problem. Plus, my memory is completely gone due to low blood oxygen. So this time I actually forgot that I had meds for the gastritis — until Momma came home and reminded me!
😛
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Oh dear.
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I didn’t mean to sound like an advertisement, there. I have no money invested in electronic pill boxes — but I find my phone reminders very helpful and thought you might to.
We now return you to your regularly scheduled program.
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I would NEVER accuse you of doing anything for any reasons except from your very generous heart…
❤
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Awwwww.
It just seemed like an advertisement!
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Not from you, sweetie…
🙂
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Awwwwww.
Am I repeating myself?
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That’s redundant again…
😀
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Yep, absolutely true Elyse. Well said.
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Is this the Paul I know and love writing such a short comment?
Here’s to staying out of the pot!
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Ha! I could write reams of personal experience that reinforces your comments Elyse – but you said it best.
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