So, OMG, This Isn’t Any Fun

So, um, I'm on drugs.

I hate being fuzzy headed.

I really, really, hate it.

You should appreciate the ability to think clearly.

Do you?

If not, you really should.

Trying to think through the fog of medication is exhausting, dizzying, and hopeless.

Also?

The drugs aren't even really helping the pain.  (Either that, or my pain level is just too far gone to be touched by my usual medication.)

The pain got so bad yesterday, I called Dr. Painless for "emergency" help.

He's out of town.

(Of course he is!)

Instead, I talked to an idiotic, fill-in, nurse.

Let me repeat, IDIOTIC.

"What do you think we should do?" she asked me, mystified.

"Seriously, you're asking me?" I replied.

(And no, I don't have a lot of patience when my pain level is off the charts.)

"Would you like morphine?" she asked, unsure of herself.

"No, morphine makes me really sick to my stomach.  I definitely do not want morphine," I replied.

"Has this happened before?  Do you have any suggestions?" she queried, voice wavering.

Did she just ask me if this has happened before?

Did the NURSE just ask the PATIENT for treatment suggestions?

Sigh.

"Never mind," I answered and hung up.

After all, how can I possibly trust someone who is clearly just guessing tossing out random options?

I don't have a lot of patience with incompetent people.  

In fact, when I'm in a lot of pain – I have none.

Life with chronic pain:

IMG_0680
Everything about the above photo is RIGHT … every detail of it.  The fogginess, the grittiness ….

Well, except for the part that doesn't show the other zillion bottles of medication in the cabinet.

Anyway ….

A few of you asked if I'm in my current pain hell fog due to the swimming I've attempted lately.

Probably, in part.

I've been definitely feeling an increase in pain the last couple weeks.

I've been trying to increase my pool time slowly, but as much as I love it – swimming does cause more pain.  I imagine it always will, even with the post-car-accident modifications I've made in the manner I "swim."

(And yet, at the same time – being in the water is good for my arm.  Go figure.)

Sometimes it's hard for me to curb my enthusiasm for swimming and I overdo it a little.  I've been trying to be careful, but the pain has been creeping up on me in recent weeks.  

Pain is like that.  

Not that mine ever goes away, but the real intense pain?  Sometimes it arrives suddenly and swiftly, but other times it builds slowly … sliding its tentacles around me in a tighter and tighter grip until I can't escape.

Those tentacles are evil and they pull a person down into a black abyss.

And no, I'm not being overly dramatic.

In addition to swimming,

I work out on an elliptical most mornings.  

Elliptical-machine

I use the elliptical to get a cardio workout.  (I also use it in an attempt to keep my fat ass from getting even fatter.)  I just use my legs … I completely ignore the arm part of the machine.

Except, the other day I thought I'd hold the handle of the arm lever and let it move my arm for me, JUST FOR TWO MINUTES (of a 45 minute workout).  Mind you, the machine moved my arm for me, I didn't do a thing but let it.  I thought it would be a good thing … moving some of the muscles I can't move on my own.

It was only two minutes.

How can just two minutes wreak such havoc on my damaged body?

Oh.My.God.

Never again.

It makes no difference the movement didn't require any effort on my part – my arm just absolutely cannot be made to move in any that direction.

I don't know why.

I don't care why.

I just know it sent me deep into the abyss.

I'll climb out in a few days, I know I will.

I've been here before, and I'm sure I'll be here many times again.

And yet, every single time, it comes as a shock to me …

How really horrible it is to be in this place.

© Twenty Four At Heart

28 Responses to “So, OMG, This Isn’t Any Fun”

  1. Michelle

    I am so sorry. I also can’t use an elliptical machine – the arm bits – because I like to be able to use my shoulder. And my pain is nowhere near as bad as I imagine yours to be. Praying the pain goes quickly for you.

  2. Karl

    Like Michelle, my pain is nowhere near yours. I’m pretty sure I have a torn rotator cuff, though, from a skating injury a year and a half ago. Yeah, I’m finally going to see an orthopedist next month.
    Fingers crossed your pain level shrinks immensely.

  3. Jenny in MN now AZ

    I wish I could take some of your pain away for you. I know the feeling of having your brain hear nothing more than the terrible pain signals. No one can understand the hell you are in until they have been through a day of that…then magnify it by days on end. ugh. Gentle hugs and lots and lots of hope and prayers sent your way!
    Hang in there and be careful while you are in your fuzzy fog!

  4. linda

    Hope you got that nurses name and plan to speak to Dr Painless about her. Hope you get some relief very, very soon.

  5. Di

    Dr. Painless should really have someone that you can be referred to to speak with when he is away. Was that a real nurse you spoke with? Sheesh… she sounds like she was just a receptionist for heaven sakes. Not cool.
    Di

  6. Pam

    I’m so sorry! That stinks that your doc is out of town. My daughter deals with a chronic condition and it is hell when her doctor isn’t available and someone tries to ‘help’. It is so frustrating! I can imagine what you’re going through dealing with that nurse… I cannot imagine what you’re going through with your pain.
    Take care,
    Pam

  7. Tami

    There’s nothing worse than having a substitute medical person try to fill in without knowing anything aobut you or your situation. Been there. Frustrating as hell. I hope the pain improves over the weekend. Gentle, gentle hugs sent your way!

  8. Jan

    Oh, Suzanne – I am SO sorry. I wish there was something – ANYTHING – I could do for you. I also agree with Di – Dr. Painless really should have *someone* there halfway competent to handle patients. After all, his business is PAIN MANAGEMENT. Shame on that nurse for not trying to find someone more qualified for you to speak with.

  9. Judi

    Gah! I feel for you and hope the pain subsides very soon. I can’t stand incompetent medical “professionals” either. I am on a vendetta to switch my dad to a new orthopedist. Every time we are there he asks the most basic questions (and also gives bad advice) and I always want to scream “how about reading his damn chart for 30 seconds before coming into the room so you know who/what you’re dealing with!” Sounds like that nurse needs the same lecture and more. I do hope you talk to Dr. Painless about her when he returns.

  10. dona

    The RN was probably not incompetent. She was most likely working to fill in for an ill call or vacation. She wasn’t familiar with your chronic pain issues. You’re not calling with flu symptoms; you’re calling about wanting something to relieve your pain and that most likely would have to do with a narcotic which she can’t disperse anyway. Pain is subjective. Exactly what did you expect her to do for you? An RN’s options are limited over the phone. If you were feeling that desperate and in need of something strong to help you deal with the pain then you should have gone to the ER stat. You know as well as I do that a narcotic RX can’t be given over the phone nor can it be called into the pharmacy — you have to pick it up in person. NO exceptions.
    A phone call to a Doctors office when you’re in that much pain is silly. If had you reached Dr. Painless, if he thought your pain was something new he would have had you come into the office for an examination anyway. Doctoring over the phone is NEVER ever a good idea and rarely if ever done — you can’t treat someone in horrible pain without examination. So the nurse asking you what you would like her to do was not stupid, or silly, or anything. It was her trying to figure out how she could best help you. Sometimes just asking the patient what they would like, or how they feel actually WORKS. After all, medical professionals are not mind readers.
    Sometimes when dealing with chronic pain and health issues we have to abandon lifestyle choices that although we enjoy, we know that by doing them, they will affect how we feel. i.e. SWIMMING.

  11. Judi

    If I were in a lot of pain, and trying to manage it, I think my first call would be to my PAIN MANAGEMENT doctor, too. That’s not silly. She didn’t know he was out of town, and if he had been there he may well have had her come into the office. The nurse didn’t suggest that she come to the office, didn’t suggest she go to the ER, didn’t seem to either have access to or take the time to read her chart so she didn’t have to ask stupid questions like “has this happened before.”
    Seems to me that anyone working in a PAIN MANAGEMENT office, acting as the on-call expert, would understand that someone in incredible pain might not be thinking completely clearly, and is looking for expertise and guidance (especially someone who has been dealing with pain for a long time and wouldn’t call for help frivolously), and the medical professional would try to be more helpful.
    Sometimes when dealing with chronic pain and health issues, the medical professionals need to act more professionally and have a little compassion for people trying to live their lives while managing debilitating pain.

  12. sandi

    Sending love and a “you know I am here if you need me.” I can run PR around town if you need me too.

  13. Twenty Four At Heart

    Dona –
    I didn’t call a nurse for help. I called my doctor. He’s a pain management specialist, and in fact – is supposed to be one of the top pain specialists. Calling him when I have a pain flare up is what I’m supposed to do .. per his orders. It isn’t “silly” and I don’t know how anyone could think calling your pain specialist when you’re in pain IS silly.
    He wasn’t there and a nurse IN THE PAIN MANAGEMENT OFFICE took the call. Everyone who works in that office deals with nothing but PAIN PATIENTS. One hundred percent of the practice is pain patients. Usually when he’s not there I get his PA who CAN and DOES prescribe medication. I had no idea I wouldn’t be talking to him, or his PA when I called.
    Also, I would expect that a medical professional, in a pain management office, would have the sense to look at my chart and would know how to deal with calls from patients in pain. That IS her job, after all. It wasn’t like I called a general practitioner and expected advice on a pain flare up.
    I wasn’t asked to come into the office. The last time I had such a bad pain episode I was given a 5 day course of steroids which WAS prescribed over the phone. I have a cabinet of strong narcotics at home. I needed advice on whether I should get an alternative or take more of what I have.
    I did not belong in an ER. There is no “emergency” for a patient who has had eight surgeries and can’t be fixed.
    Also?
    My doctor and past PTs have told me I SHOULD swim. It is good for my arm. They want me in the water. Not using my arm (in spite of the pain it causes) is detrimental.
    Swimming isn’t a “lifestyle choice” it’s a way to keep the small amount of mobility I have left in my arm. Yes, I like to be in the water. I like it, because my arm is lifted by the water and can move more than I can when I’m NOT in the water. It’s freeing for me even though I can’t swim the way a “normal” person does. Anyone with a long term disability understands we rejoice for small moments of normalcy whenever, and wherever, we find them.
    Lastly, if you re-read the post you will see the activity which threw my pain over the edge was the two minutes of arm activity on my elliptical. I thought I was doing something that would help my arm, and I was wrong. I only attempted it for a whopping two minutes. I’m not a medical professional. I made a mistake. I’m paying for it with a hell of a lot of pain …

  14. Nancy P

    well crap! I am sorry S. Hugs to you.

  15. Emsxiety

    As a wife of a man with horrible chronic pain I find Dona’s comment insensitive. Perhaps she is a nurse in a physicians office and has dealt with people who expect miracles over the phone. Or maybe she just doesn’t understand chronic pain. Every person in a pain clinic must be well versed in the pain syndromes.
    As for her limits as a nurse, she asked if she wanted morphine, as you know, you can’t prescribe that medication over the phone, what was the point of asking?
    Things that should have been asked, what activity led to this? What level is the pain currently at? Have you tried whatever techniques the pain doc has tried you for said flare ups? Where can the PA reach you after I give him/her this information?
    Not every person in chronic pain is faking, not every person in chronic pain wants more pain meds thrown at them. But every person in chronic pain wishes they could just live their lives.

  16. Lisa

    Wow, Dona, I really hope you’re not a medical professional if you’re this callous about someone’s suffering.
    Suzanne I really hope your pain flare-up subsides soon. I had a very small taste of what lasting pain can be like before my last foot surgery, and it’s exhausting and demoralizing, and mine was *very* mild compared to what you’ve been through. I wish there was something more I could do besides send you healing vibes. Hopefully when he gets back you can have a discussion with Dr. Painless about what happened and what to do in the future when he’s gone. XOXO

  17. Editdebs

    I’ll be sending positive thoughts and prayers your way. I hope this flare up subsides soon.

  18. Karen

    I live with chronic pain and I would have called too. Why wouldn’t you? Dona doesn’t get it and if she’s a medical professional I feel very sorry for her patients. Maybe she’s the incompetent nurse you talked to? I hope your pain eases up soon to normal pain levels. (Yes, I know the difference personally between normal pain levels and excruciating flare ups.)

  19. Mike

    Dona is not a chronic pain patient and like most people who haven’t experienced it she has no fucking clue. Ignore her.

  20. Leann

    Sending thoughts your way. I hope you can get some relief… VERY SOON

  21. Lunachance

    I too am a chronic pain patient. Often I find the nurses in the pain management office to be the “keeper’s of the drugs.” There was one pain nurse who refused to write a 90 day prescription for my pain meds (by the time I ended up at the pain team, I had been dealing with my cancer for about 9 years) because she did not believe in 90 day prescriptions. Well, my insurance pays for that benefit and the difference in out of pocket expense would be $160 per year for the mail order, or over $1,650 to get monthly meds at the pharmacy — if I were to mail order the monthly scripts, it would have cost me $240. Anyhow, I am agreeing that the nurses feel too powerful and that it is hard to deal with them when you are having a flare of pain. Another peeve of mine is when people say their pain (on a scal of 1 to 10) is a 10 or higher. Let me tell you, when your pain is a 10, the tears flow out of your eyes, but you cannot even sob, much less talk.
    Good on you and I hope your pain settles down.
    Lunachance

  22. karen

    Oh, Suzanne, I am so sorry. I can relate only on a smaller level… whenever I try to do things that the old me did, my neck screams that I just really can’t. Period. And it’s so frustrating because I’m not so old that I should have these limitations yet. But again, not on the same level as you and I wish I had some good advice on pain management that reaches the levels you deal with… and grateful that I don’t.

  23. Kathy

    How come you only respond to snarky beatch and not all the people who are being supportive of you? I know, I know…how can you not when you’re hurting? And she sure does sound like most know-it-all “medical professionals”. They chap my hide. Grrr…
    Hang in there. And maybe consider letting Dr. Painless know about that conversation with the nurse. He’d want to know, I would think.

  24. dona

    I do deal with chronic pain on a daily basis. I also have a “Dr. Painless” and see him monthly and have for the past eight years. I’m a cancer survivor, suffered through a cancer that left me with horrible long term pain, so I know all about pain and pain clinics. I also worked in a level one trauma hospital in a major metro area for many years, but not in the capacity of an RN.
    When you call a clinic not everyone you speak to is familiar with your case. Pain clinics field hundreds of calls — and not everyone you speak to is familiar with your case nor do they have to be. RN’s do specialize in certain areas just as doctors do, however, if you happen to hit an RN who is filling in for a some one who is ill/on vacation or whatever you might get a nurse who is not a pain clinician. She might have a broad knowledge of pain meds and general pain knowledge but he/she isn’t gonna know everything there is to know about your particular case. It’s not possible. Even your Dr. Painless has to review your case to remember your last office visit or conversation/meds your on ect. You are NOT his only patient and even tho you might feel like you’re his favorite or he knows you better than most or understands you best, just know that EVERYONE he sees most likely feels the same way. I’m not saying he doesn’t care about you because he probably does, but he has a million other patients he cares for too.
    Pain is subjective. The nurse asking what she can do to help you is completely normal and in fact, it is the most logical thing for her/him to do given that she doesn’t know your COMPLETE history or have your chart in front of her. Even if she had your chart it takes awhile to read it and you’re not her only patient for the day. Asking the patient what she would like you to do for her doesn’t mean she is incompetent. She’s just trying to cut to the chase and figure out to best help you in the least amount of time. She’s not a mind reader and besides MOST patients know exactly what they want or need, chronic pain is something they deal with daily. RN’s are taught to triage calls so cutting to the chase and getting to the root of the problem the fastest way possible is the best use of their time.
    My pain doctor is one of the top pain specialist in the country too. Aren’t they all?
    Look, I get your chronic pain, I really do. I sympathize with you because I know what you deal with. But to bash an RN doing her job because she didn’t give you the response or the “thing” you were looking for when you called was uncalled for IMHO. Every patient who called that pain clinic that day thinks they’re the most important call of the day and since they’re at the clinic ALL the time they assume everyone should know everything about their particular pain issues/problems. Trust me, that is not the case — they have a whole room full of pain patients they see daily with problems as bad or worse than you. That is the reality.

  25. Cathi

    dona I too am cancer surviver. Double masect, radiation etc. I recently had very minor, nothing like suzannne’s, shoulder surgery. the pain from my minor shoulder repair was worse than anything I had with my cancer surgeries. horrible, horrible pain. Who are you to say her doctor has a room full of people with problems worse than hers? How can you know what her pain is?

  26. Twenty Four At Heart

    Dona –
    When did I ever write that I thought I was Dr. Painless only or favorite patient?
    And no, not all pain specialists are the top in the country – far from it.

  27. dona

    Cathi…Pain is subjective. What I said was: “the office is full of patients with pain as bad or worse than yours.” It’s the truth and I’m not minimizing anyones pain.
    24… Define ‘the best in the country’. I can find 250 other pain specialist who think they’re best in the country and have the degrees to prove it. Re-read what I said about Dr. Painless being your favorite patient.
    Deb…I am in the medical profession.
    Again, I get your pain. I even understand your frustration that you didn’t get the result you were looking for when you called Dr. Painless. I’m just saying that the RN who took your call was not acting irresponsibly and to bash her on your blog was unnecessary. Thats all.

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