A Spoonie Meltdown

 

We interrupt your regularly scheduled program to bring you this Spoonie Meltdown. Last week started like any other week. Well, that might be overstating it. I had been on vacation. I came back Monday to an already overfull work week and hundreds of emails to respond to from the days out. I also had 3 doctor appointments scheduled. Did I do that on purpose? No. The allergy shots are timed and the timing has nothing to do with me. The endocrinologist appointment is every 3 months, and it had been scheduled months earlier. And the rheumatologist appointment was new. I made it the day my shoulder joint completely gave out, and being a new patient, it took months to get this new doctor to see me. So to say that I began the week already stressed is a fair statement.

So Monday morning, I was already getting work demands about requests that were made from my vacation. I hadn’t been back 2 hours before people were demanding results. I still hadn’t even read their original emails yet. I was also asked to do 2 conference calls— during 2 of my scheduled doctor appointments that week. If people had checked my calendar before scheduling these, they could have easily avoided a problem.

So by Wednesday at the endocrinologist, I was already harried. The appointment itself did not go well. Nothing but bad news. So when the doctor led me to the blood draw room and the nurse lifted her arm, pointed, and yelled, “No! Go!”, apparently she was already “closed for the day”. That’s the exact moment that it happened: I lost it. The doctor took me to the receptionist and then he high tailed it behind closed doors. I knew what this meant; they had done this to me before. I was going to have to come back—now a 4th appointment for the week. A 4th time off from work. I was going to have to pay again to park, make the hike from the parking deck, and come back to this office. You have got to be kidding me. Cue the meltdown.

The meltdown looked similar to the one Steve Martin had in “Planes, Trains, and Automobiles”, the one he had at the rental car counter, only a few less F bombs. And this staff, who is normally surly and mean, who I normally have to kiss their butts to get what I need (lab results, rx refills, you know, their jobs), they were scared. “Please calm down, Mrs. Clardy. We’re so sorry, Mrs. Clardy. There’s nothing we can do, Mrs. Clardy.”

Puh-lease. This is an endocrinologist office. Every single patient in there gets a blood draw. And they close the lab while there are still patients in the rooms? And I wasn’t the only one being made to come back? Yep. Would they even consider pulling blood before we see the doctor? Wouldn’t that make sense? Nope. I was told, “It’s against procedure.”

I then cried the entire hour it took to get home in rush hour. I arrived home hyperventilating, mascara all over my blouse, eyes swollen. My poor husband. He endured one full hour of me yelling and crying. I yelled so much, I lost my voice (luckily for my husband).

Now, I think we all know full and well (and I even knew it at the time it was happening) and can go ahead and say, that one missed blood draw and one extra appointment is NOT the end of the world and is NOT worth all of these histrionics and all of this melodrama. But you know what IS? The Life of a Spoonie. I’m sorry, but this one instance was just the last straw on this Spoonie’s back.

I’m sorry, but the things we deal with every day of our Spoonie existence are just too much. Period. We work when we feel like crap. We have to explain to our jobs why we need yet another hour off work for yet another doctor appointment. We have doctor appointment after doctor appointment where they make us wait for hours on end to hear rarely any good news. We get diagnosis piled on top of diagnosis. We constantly battle insurance companies and incorrect EOBs. We are juggling prescriptions, often having to fight for refills. We take piles of pills all day long that in some cases have such side effects we wonder why we are taking them. I’m sorry, but no one should have to deal with all of the things we deal with. As we well know, being chronically ill, in a word, sucks.

When I went back for my blood draw 2 days later, I wasn’t much better, but I was quiet. The nurse in the lab was surprisingly apologetic and was trying to blame it all on the doctor. I finally just looked at her and said, “Can you take off work 4 times in one week for doctor appointments?” And she replied, “Never.”. “Then why do you think I can?” Of course, she had no response to that.

Bottom line, I go along every day doing the things that I need to do as a chronically ill person to keep going: I go to work when I feel awful, I go to my zillion doctor appointments, I take my handfuls of meds, I spend hours on the phone with insurance companies, I say, “I’m fine” when people ask me. I keep going because I have to. Because I have no choice. And typically, I do it with a fake smile plastered on my face. But every so often, I come to a point where I just can’t take it any more. So every once in a while, I am entitled to my occasional meltdown. So until the next one happens, I now return you to your regularly scheduling programming.

 

Article written by staff writer, Kelly Clardy

 

Kelly lives in Atlanta with her husband and kitty. She developed PIDD in 1995, went undiagnosed until 2007, and has been receiving IVIG ever since. She also has: capillary hemangioma of the colon, chronic anemia, Hashimotos, insulin resistance, palindromic arthritis, and a host of other dxs. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and Facebook, Kelly Jaeckle Clardy.

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  • POAndrea

    Hugs all ’round to Kelly and all the commenters! My husband has had 11 surgeries for gastroparesis in the last five years (three of them in just the last three months!) so we are not strangers to The Meltdown. Only it is I who goes bat-crap crazy, not my sweet, sainted, gentle-souled husband. (I’m sure we’re on some sort of no-fly list after my response to the pain specialist who doesn’t want to treat my husband because he’s “too ill.” Imagine that–a SICK person who needs medical treatment!) As time goes by, I find myself becoming less tolerant of doctors, nurses, and insurance pukes who fail to act in my husband’s best interest while I become MORE accepting of slights, insults, and inconveniences affecting me alone. It kinda puts things into perspective. I don’t get irritated by the slow motion checkwriter at the grocery store anymore, the hair stylist who’s running late, or the fast food worker who gets my order wrong. I do, however, get FURIOUS at the insurance adjustor who denies my husband surgery until he tries to lose weight unsuccessfully for at least a year. (Dumbass–he has already lost 40 of 225 pounds due to his total inability to digest food. Another year at that rate will leave him at 6’2″ and 70 pounds.) I unloaded on the receptionist when we arrived for an appointment we scheduled three months ago only to learn that in the interim, the doctor has changed his Tuesday clinic from (the town to which we just drove three hours each way in a January snowstorm) to (another town an hour closer) and failed to tell us when we called that morning to verify the office wasn’t closed due to bad weather. I sent a critical care nurse home crying when the anesthesiologist failed to write any orders for pain meds following a six-hour surgery; she said she would wait and ask him when he came in the next day (On the Saturday morning before Easter? Yeah, he’s coming in to work all right…….) And I SWEAR I’m not like this at all–normally I can achieve great things with the least drama and conflict. Except where it comes to my husband’s health. I can talk a drunk wife-beater into handcuffing and putting himself in the back of my car, and I’ve had shoplifters thank me after arresting them. I think it says a lot about the medical and insurance fields when murderers-rapists-drugdealers-arsonists-pedophiles act better than a lot of nurses, doctors, and office staff. It is to their (dis)credit that they can turn a peacekeeper into a stark raving lunatic.

  • Amy

    I had one after I was NOT told the clinic I was to go to had been moved; could find no one to tell me where it was; could not get anything but their $#@$!! answering machine that was too full to accept another message on the phone & neither could the guy at the information desk (who had also not been given the information that they had moved or where; that, I got from the freakin’ CLEANING CREW!!! for God’s sake!), AND…when I finally got there, “Sorry, we closed 5 min ago.” I had my meltdown: No one can get you on the phone including the information desk, your answering machine is full & going to the operator gets you hung up on as does just trying to wait & see if it rings through again. No one knows you moved or where except the cleaning crew. It’s not MY fault, I’m sick, I can’t make a trip well over an hour one way, right now I don’t know how I’m going to get back; your shuttles to & from the other facilities stop before this appointment even starts & I’m not allowed to stay overnight so I can’t use them & besides, my scooter is too long for the lift so I’m not ALLOWED to use them. But I still had to get an appointment to come back. And, since I’m caregiving a husband who’s worse off than I am (but who’s been declared not disabled while I am), I really am not usually well enough to go that far on my own. No one wants to drive a conversion van & the scooter won’t fit in their cars. Besides, it’s a military facility, they can’t get on, they’d have to drop me off somewhere on a major metro main street which is way too hazardous. So, every month, I get too sick to go despite trying to “make” myself well enough in true Spoonie style. I cancel it. They demand I reschedule it. Finally, they said, “Call us when you feel up to coming.” I said, “Can I come in the day I call?” “No, of course not, appointments have to be booked 4 weeks in advance.” “Well, I don’t know what day 4 weeks in advance I’m going to feel up to driving through awful traffic over an hour one way, getting the scooter out of the vehicle, getting there, going through the procedure, then going all the way back the way I came without getting too sick to drive the rest of the way home.” “Well, then, I guess you just don’t get care then.” “Yeah, you can say THAT again!” There are 2 facilities to which I can go, problem is, only 1 has oversize vehicle parking that is not always taken up for some other reason, necessitating going early enough to see if I can park, then call their security people, speak to 5 people about the issue, get permission, write down the badge no of the person who gave me the OK, give THAT to 5 other people who tell me I can’t park there but can’t tell me where else I CAN park an 8 1/2 ft high van, get out, get in, tell them I have to be seen asap because of the security thing, have THEM call & talk to 5 different people before they are told yes, I have to get the van out of there & why is my appointment not already over so I can move the vehicle so some bigshot doctor can put his car, which will fit in the garage, in the space for oversize vehicles, get rushed through the appointment, hassled about wanting to pee before I leave as it’s only slightly LESS than an hour’s drive one way, & call them to tell them I’m on my way to the van & it should be 20 min max before I’m out of the space. Then I often have to run a gauntlet of people who are waiting for me to move the van, who only leave when I sweetly suggest it would go a lot faster if they helped me with the ramps & getting the scooter up them, then they disappear (mentioning actual WORK does have that effect on nags). I leave to “it’s about TIME” exclamations & glares of the doctor, for whom I stop, roll down the window, say, “I’m a nurse. You’re not a REAL doctor. You’re one of those bureaucrats that keeps patients from getting care from real doctors. Why don’t you take a flying leap at a rolling donut & leave the rest of us alone, let your doctors do REAL WORK for a change?” Roll up window before they can reply, watch their red faces as they bellow, “I am SO a real doctor!” while everyone laughs at them & I pop the window down & say, “Oh, no, you’re NOOOOOT” which is the only fun I have the whole day. It does kinda make the place with the limited parking look like more fun, but the frantically self-important doctor isn’t always there. In fact, in many cases, it’s a real doctor who-guess what-just parked in the garage & went to whatever meeting or event they were having. But the security people want that spot EMPTY, even if it’s never used the rest of the day!

  • Tendai

    That was a horrible sucky day for you and I am sorry. I used to behave nice and polite for my doctors, my mom’s doctors and my son’s doctors but my chronic pain levels put me on edge all the time, my tolerance for foolishness is low and it seems EVERYONE is incompetant and they lie. I wonder if doctor’s know that about their staff? How often they mess up and lie to cover it.

    Frankly, I don’t give a dam what they think of me because they are not the only BBQ in town. So I say exactly what I think right when I feel it and I call them on their BS. And it feels gooooood. 🙂 I will not be jerked around when I pay them a lot of money for them to do their jobs. We do have a few great doctors in our arsenal so when we run into really bad offices, it looks really bad and like I just said, I have no patience.

  • Sari

    Thank you, all– Kelly for your story, and for prompting everyone else to post theirs. I just found this site, and I’m so grateful I did. I feel much more “normal”, and better not only about my meltdowns, but about the guilt I feel because of what others say, as well as all that I put on myself for not getting everything I “should” done. Two nights ago I showed my fiance the Spoon Theory. He said he’d never seen put so well all that he’s learned about me in the last three years. Then this morning, when I apologized to him for not bringing up the laundry from the basement because my joints and legs were killing me, he just looked at me and said, “Uhh– spoons??” I’m so lucky to have him, and now to have others who understand without me having to say a word in explanation. Thanks, all!

  • Yvonne

    OMG, I feel for you. And I agree, something was in the air last week, as I too had a meltdown – and I don’t do those. I have RA and Lupus, and I just had had it. so I erupted. And it felt good after wards.
    Love and hugs to everyone who has an asshat of a Dr. Should never happen, but it does. ))))hugs(((( Yvonne

  • grumpycrohnie

    For some reason (maybe because they see us so much?) we do not seem to get as much attention as other patients. So more mistakes, more brushoffs, more being ignored, more phone calls not returned, more scripts and test results that sit in the out box without going out, …

    We do have to stand up for ourselves. Genuine tears can sometimes work wonders for getting attention. Though we have to pace them out or they won’t work anymore and we will just get ignored more.

    ====
    This? “Zebra, medical slang for an obscure and unlikely diagnosis from ordinary symptoms” I thought it meant she was a mod…

  • Jen Martin

    Yet we find we are not alone in this!!! Muah! xoxo

  • isabelle janicaud

    wish id become a doctor…then i wouldnt have to deal with the condescending textbook baffoons..vent lol

  • Good grief! Will doctors never learn? Like to many said before me it must have been in the air. I was at the neurologist office last week regarding new and worsening migraine type headaches. He asked about my recent fainting spells and focused on that. I said but what about my headaches? (ignored) and then to tell me that I needed a heart monitor because all fainting spells are cardiac in nature. Sigh. I did the heart monitor for 24 hours (normal) and his office has not contacted me further. Sigh. Meanwhile I still have headaches, plus fibro, back issues, and have knee replacement surgery scheduled next month. Sigh. I melted down at home and contemplated firing all my docs. I just want to be cared about by a professional that claims to be following the Hippocratic Oath!

  • Lara

    after working today for 9 hours for a bunch of idiots, with my head is swimming with baclofen, yours was the perfect post to read.

    last week musta been universal meltdown week. i too had a two day all out tantrum, of frustration, only to be followed by this neuro attack………….which of course is only leading to more frustration and stress, and so which leads to more frustration and stress…..which leads to a meltdown, which leads to more frustration and stress……..blah blah blah.

    my husband looks at me like i have ten heads, when i start to cry every morning because on top of all the crap i have to do in this rat race called life, i have to do it in excruciating pain with a head-full of meds and kooky sensory neuro symptoms…….my head feels like i’m wearing a too tight hat, my legs feel like cell phones on vibrate, and i can’t see out of my right eye, every muscle from my eyeballs to my ankles feel like they’re made of concrete, i have blind spots every ten seconds…..

    life isn’t hard enough?????? We get to do it sick<???? wth?
    thank goodness someone understands.

    lara

  • Liliana *Lilykat* Guillen

    Pearl, I looked on wikipedia: http://en.wikipedia.org/wiki/Zebra_%28disambiguation%29#Other_uses Hope that helps?

    Kelly, the gentlest of hugs for you my dear! I can also relate, like the numerous spoonies who posted a comment. Meltdowns are a fact of our spoonie existence. I sometimes think that my jaded doctors can only be reached at an inner level when I do blow up on them. Otherwise they treat me like a number, diagnosis, scripts, labs, see ya! I feel like I’m just herded in and out in a matter of minutes (after waiting to be seen for hours!) with questions still left unanswered. It just gets to be too damn much for any person, sick or not. Stay strong Kelly!!

  • Elspeth

    I totally understand. I have PIDD and get IVIG once every two weeks at our local hospital. However, the immunologist has been away for 3 of the past six weeks. He doesn’t have anyone who can fill in for him while he’s away, and he won’t allow any patients to get their IVIG while he’s away (in case I should have a reaction). So my whole schedule gets upset and my immunoglobulin levels drop due to not getting my IVIG on a regular basis – as a result I’ve had influenza and bronchitis. I’m not happy about it, but when he’s the only guy in town, what else can I do? My PCP won’t sub for him. Sometimes these doctors (and staff) don’t realize that we have lives (sometimes very complicated) outside of their offices.

  • Thank you for posting this Kelly,keep your mind strong.

  • Geenah

    Oh my Goodness!!

    I had a meltdown about 10 days ago, except it was aimed at and a direct hit on my boyfriend. I SCREAMED at him (I rarely cry…long story); the poor guy. His feelings were so hurt that he wouldn’t even look at me.

    I had had a rough week, and I let him have it over something not worth screaming about (although it had been about the 30th time I had reminded him to do what hadn’t gotten done, and there was a HUGE mess that “I” was going to have to clean up….), but it did not warrant the screaming fit.

    It happens to all of us!

    It’s too bad that we have to put on a “brave face” all the time, so everyone else isn’t bothered by what’s really going on with us. But, sadly, I have found that empathy is in short supply these days….”everyone has problems….blah, blah, blah.” OK, whatever. Walk around in my body for a day!

    I have 5 dr appointments this week, and I went in to have blood drawn and xrays taken last night after work. On top of all this, I’m getting a cold, which will likely turn into a sinus infection (they usually do). When I told my boss I might be too sick to come in to work, he just said “OK.” My poor boss just looks at me like I’m crazy.

    But if everyone else thinks they are tired of me being sick…then I am tired of it to the nth degree of infinity!!! I wouldn’t wish this on anyone.

    Great post and great replies!!

    Hugs, Geenah

  • Carolyn M Vella.

    Oh, man, can I relate! And how did you keep those F-Bombs to a minimum? Take care, Carolyn

  • Deb

    Something just occurred to me …as fellow spoonies we ALL can relate to this article (in some form or another) i think sometimes we need to STOP pretending we’re ok … stop saying “im fine” and give people the hard honest truth.

    My young sister in law complains to me about her “horrible” life… being a teenager she complains about the normal typical things a teen whines about, and i sit there nodding sympathetically and lovingly, and on the inside i just want to tell her “you think YOU”RE life sucks?!” so the other day, when she innocently asked me how i was doing i gave her the absolute truth of how crappy i really felt… and for once it hit her.

    Now, i’m not saying we need to do this to everyone all the time, but the fact is we’re different… we have “special needs” and why cant we get special treatment? You wouldnt expect a crippled person to walk the flight of stairs, or the blind person to see the stumbling block — why should the world treat us like “normal” people ?!

    Ok im done rambling …..

  • JUDY

    KELLY-MANY THANX FOR POSTING THIS! MY HEART GOES OUT TO YOU, SERIOUSLY! I, TOO, SUFFER WITH MULTIPLE DIAGNOSES, AND AM CONSIDERED TOO SICK TO WORK, SO I HAVE DISABILITY, WHICH ENTITLES ME TO MEDICARE, AND STATE MEDICAID, AND PRESCRIPTION HELP. ALL THAT, AND, STILL, SOMETIMES I ALSO HAVE A MELTDOWN! USUALLY, THEY HAPPEN AT HOME, WHERE ONLY MY ROOMMATE(READ, EX-HUSBAND)HEARS ABOUT IT. HE JUST LETS ME RANT AND RAVE UNTIL I’M EXHAUSTED, AND GO TO TAKE A NAP. MULTIPLE SPOONS TO YOU!

  • stephanie gawthrop

    this was great! sometimes i wonder what the heck these doctors and well the whole world of people out there who think we are not sick yet still put us through all this crap and still expect us to live as normal people do! i love this article and i intend to share!! thanks again for sharing in a way that most of us want to to be able to and cant! you have a wonderful way with words! you are so spot on as they say! now we all have more worries with the gov and the cuts they are making whats next our meds will be cut and who can afford the ones we are on and of course they can just stop giving them to you no matter the after effects its not them they dont care! no one is safe! oh except them for the most part! im waiting for the axe to fall! but anyhow thanks for this awesome article it was well written!! huggs

  • Big hug. And another big hug.
    I understand and have been there many times over the years.
    The biggest lesson I’ve learned is that no one – no one – will understand, whether caregiver, doctor, nurses or other health professionals.
    Sometimes a hissy fit is the only way we can express ourselves to a world without a clue.
    As long as it doesn’t cause more physical distress, let it fly, then let it go.

  • Thank you for posting this. Thank you to everyone else who posted in the comments.

    I’m not alone.

    I’m a man with some dignity but when the stress and pain got to be too much I had those meltdowns. Especially before I got my pain medication, or during a terrible year when the doctors cut my dose in half “because it’s a high dose” before I could get into a pain clinic – where the doctor was horrified and immediately reinstated it.

    They happen over medical errors all the time. Don’t ever have more than one thing wrong with you. Chances are whoever you’re seeing for pneumonia will get confused by everything else and try to give you a drug you’re lethally allergic to. That happened so many times that I’m just lucky I never went into the hospital unconscious with it – I’d have died or at best woken up on a respirator in the ICU loading the allergies onto the disease.

    It scares the pants off me. I’m not happy with my doctor right now but it’s hard to communicate with him. At least he’s King Log, he doesn’t do much or try to shove off a lot of experiments on me or take away my prescriptions. But something’s going on with one of them and I haven’t had it for two months now, which means I haven’t had my full function for two months now.

    That’s eating me in a slow grinding way. I’m trying to be patient about it because a meltdown isn’t going to help anything, but I am completely fed up over this. It’s an issue of whether it’s paid for, so I’m at the point where fine, I’ll take it out of my small living allotment if he’ll prescribe the cheapest form just so I don’t have to live without it while the insurance wrangle goes on.

  • Pearl MacDougall

    Hate to sound stupid but what is meant by “she is a zebra” ?

  • My heart goes out to you. I am fortunate to be “sick enough” to be considered disabled, so I don’t have to drag my butt to a job every day, where I would try too hard to be normal, and would end up making everything worse. But the rest of it I understand. I spent months going from doctor to specialist to someone who specializes even more, etc. Each time I was told, yes, you have a problem but we don’t know what it is. I thought I was going crazy. After seven months of what seemed like continual doctors appointments, the ultra-specialist found the cause of my problems; only to inform me there really wasn’t anything to be done about it other than attempt to control the symptoms. I don’t have much luck with that, but as we all know, you deal with what you have to deal with.

    My condition came on suddenly, so I used to be one of those healthy people who just did not “get” chronic illness. What a lesson I have learned.

  • Karen

    Kelly,
    I’m sorry to hear about the issues you went throgh at the doctor’s office. I hope it’s some comfort to know that you’re not alone! I had meltdown this week as well. I agree that with all the extra stuff we have to go through we deserve to have meltdowns yet we complain the least. So it’s okay. Have a meltdown and cry all you want. It helps some.
    Keep on girl. You are an inspiration to all us other spoonies. We’re here to support you and we love you! Thank you for all that you do here for us.

  • Jen

    I feel for you! There is only so much we can do before we’re GOING to snap. It’s just a matter of when… and it’s going to happen more than once. I hate that for us!

    I went through a 6-month period where I was sent to a bunch of different doctors trying to find out why something happened. All of those doctors (except the cardiologist) found something else wrong. I would think I had an answer to something and then it was another diagnosis or a crushing “I’m sorry, yes you do have this, but it’s not severe enough to do anything about… OR I can’t be given a pain med due to the meds I’m currently taking for all of my other problems.”

    Being a spoonie, for me, sometimes gets so absurd that I find myself laughing at the absurdity of it all. Don’t get me wrong, my tear ducts get plenty of use, but it comes to a point where I have to laugh. People think I’m reacting “inappropriately” or am crazy (which I already am…) for laughing, but they clearly are not spoonies.

  • Great post. My boss said something in a joking matter one day about wow she was here all week without one doctor appointment and I lost it. Normal healthy people just don’t understand. We don’t want to go to the doctors all the time or take all the pills. It is not something we choose or do for fun. Thank you for putting it out there.

  • Christina

    No words … Just a *SIGH*

  • Bad enough as your situation is, its worse in Ireland.

  • Alex

    Terrific post. I probably would have had a complete meltdown if all that had happened to me too.

  • Teri Kennedy

    It must have been a full moon somewhere. Meltdown? Melodrama? all happened here too! I soooo get it! In the course of a week and a half I was told ASAP I had something wrong w/ my heart! (wrong patient) I HAD to also see an Orthopedic Surgeon as I had a tornd tendon in my knee and needed surgery (S word not in this girl’s vocab) No tear wrong diagnosis! And that my insurance doesn’t want to pay my Iron infusion 100% “We want money”! Who knows their insurance coverage better than a spoonie? AND, We went this “go around” in the finance office last visit when she was supposed to correct the info in her computer! Her reply?”oh, I’ve been so busy I must have forgot!” Yet my word wasn’t good enough, I had to sit there while she put the insurance automated lady on loudspeaker so I would hear it and how she would then get soooo embarrassed! Asswipe! All I got over the last week and a half was a bunch of serious stress which is exactly what I do not need! They may “say” they understand why we are upset, yada,yada,yada, but they haven’t a clue how much damage the stress alone creates!
    WARNING: Three diff dr offices, three errors! Check, check, check, like mad cause they certainly aren’t doing their jobs and we have to be extra sharp. I’m mad as hell and I’m not going to take it anymore!

  • Great post.

    Sometimes it’s just that tipping point.

  • Laynie

    Oh, honey, do I understand. I have fibro, and have been seeing a doctor at a chronic pain clinic for around 2 years now. That clinic has given me back my life, and I’m not being melodramatic. Unfortunately, my doctor left the clinic 2 or 3 months ago.

    The first month I wasn’t scheduled to see anyone. The next month I saw the NP, who said she had a dilemma- set had to set me up with one of the two remaining doctors in the clinic. Unfortunately, one of them really doesn’t like self-pay patients, and other doesn’t even believe fibro exists.

    Well crap. We kicked it around for a while, and we decided to try the doctor who doesn’t like self-pay patients. At least he believed in what’s wrong with me, right?

    I scheduled the appointment. I tried hard to keep my chin up and not worry, because this clinic has been wonderful. And then my appointment today came.

    I bopped in, happy as usual. Then HE came in. His first question was where do I hurt. His second was WHY do I hurt- what is my diagnosis. Umm, shouldn’t he have read my chart? But I go along with it. I explain what’s going on, who I’ve seen, etc.

    He then tells me flat out that you don’t treat fibro with the medications that I’m taking, and that he’s going to wean me off of them. He tells me that the only reason my fibro hurts is that I’m too fat and lazy, and that the only thing I need to treat it is a diet and an aerobics class. I’m paraphrasing, but that’s basically what it was.

    I was utterly stunned at this point. Now, I’m not really attached to the idea of staying with the medications I’m on. What I AM attached to is the idea of being able to not ponder suicide because of the constant pain I’m in. I’ll work with you, but you have to give me other options than aerobics… I worked 70 hours a week before I got sick. I was NOT a lazy person. The fat came after the fibro.

    He just kept repeating I could either come off all my meds or I could find another doctor. Even though there’s not another doctor who would give me these meds. (Even though TWO different doctors and the nurse practitioner all gave me these meds for two whole years.)

    I lost it. I hate to cry in public, but oh my god did I cry. I’m also taking Neurontin to try and control the pain and it’s given me the worst mood swings, so of course this sobbing wasn’t the typical quiet crying, this was sobbing like a three year old, hiccupping and gasping for air as I tried not to wail.

    I simply hit my limit. I was out of spoons, and this jerk was telling me too bad, you’ve got to go back to what it was. I melted down like I haven’t in years. It was crazy.

    I sobbed like that off and on for 45 minutes, at least. In the office, out into the hallway, to the payment window (where I paid over $100 to be told I’m fat and lazy, thanks!), down into my car and more. And then I got angry.

    My husband must be a saint. He listened to me, agreed with me, let me curse and yell as much as I needed to, using anger to stop my sobbing. And it worked, it worked well. But I haven’t melted down like that in ages.

    It happens to you. It’s ok. You have enough on your plate that to be able to keep on with any sort of smile on your face is an achievement. Don’t worry about the occasional meltdown- even people who don’t have chronic illnesses have them! 😀

  • linda

    I think we have stressors that we aren’t even aware of, that add to the ones we do know about. roll them all around for a few days and you are guaranteed a melt down. the human body can only handle so much pain and stress before it either has to release it in some way or put you down for days. I’ve had my meltdowns with a few of my docs than god they understand or I would bee on another doc search. Don’t feel alone it happens to all of us.

  • Sam Golder

    Thank you for sharing, this really struck a chord with me.

  • Kelly,

    Wow !! I have had the same experience many times. Can understand and really feel for you. I remember a time when I was working (before disability) and I had to go for Chemo treatments early in the morning every day before work for a month. Then on the way to work, I would have to pull over and get really sick. Then continue to get to work before I was late. Being a supervisor, as soon as I would enter my office, I would be bombarded with questions and tasks to do. And really all I wanted to do was to be in bed under my blankets. That’s when my meltdowns would start. So I know how angry you can get. It’s like you said we have no choice. Thanks for sharing this with us “Spoonies.”

  • Sandra

    Awesome post. I know just how you feel. I had one of those meltdowns last week at the doctors office. I have to drive an hour and sometimes 2 hours depending on which doctor I have to go to. Well I was like 15 minutes late and they tried to tell me I had to reschedule, well guess what, serious meltdown. I did not budge and told them they would see me or I would never return. Within about an hour I was in the docs office getting meds. The craziest thing about this was that I was at my psychs office because on top of the Lupus crap I am also Bi-Polar and they tried this, oh heck no, you don’t send a pissed off bi-polar person back out in traffic, you see them and give them meds and make sure they are calm before they leave.

    Man having the damn crap does really suck.

    Thanks again for posting and letting people know that just because we are chronically ill does not mean you get to keep pushing us around and treating us like some damn yoyo.

  • Myra shoub

    I relate to this so well…By the end of a day especially with Dr. appointments, having something “go wrong” totally causes me to lose it as well. 2 weeks ago I went for the bloodwork, which was a 2 hour wait. I got home finally and they told me to come back – they forgot to draw a tube. I lost it, hysteria….once again. sometimes life with CI is a house of cards…a big wind knocks down the whole plan….

  • Tracie

    Yeah, this isn’t at all familiar to me. /sarcasm

    Major hugs if you want them, and lots of spoons. I went through this once very recently, though I didn’t blow up at the doctor’s office. My husband was a little crispy that day though 🙂

    I really don’t think they get it, but we do our best to keep them informed of how to properly deal with the chronically ill.

  • Awesome post. WOW. I was frustrated FOR YOU reading that.

  • Rose (RosaryBeadz on Twitter)

    Thank you so much for writing this article! I had a similar meltdown last week and spent the whole day pretty much sobbing because of one doctor appointment that went awry. I think we try to hold it together so much throughout all the things we spoonies go through until the point at which we just crack. Then before you know it, we unleash all this pent up frustration, anger, and sadness on those around us. It’s definitely not an uncommon thing to have a meltdown when you’ve just reached your breaking point as a spoonie! It’s nice to know I’m not the only spoonie that has experienced these sad meltdowns and can feel a little less guilty because I know others in my same situation have reacted in the same way. So again thanks for sharing your story!