Chronicles of Life with Multiple Sclerosis
" I was misdiagnosed with lupus for years before the doctors figured out it was really MS."
trying to explain things is getting fucking exhausting. I am coping the best I can and if you don’t like it, tough. It works for me and I’m the one going through this.
This is exactly what I want to say to my doctors. this and SUCK IT.
I really don’t. Like I mean, it seems pretty standard that because the pain from a herniated disc is just that debilitating, people WITH herniated discs get treated with stronger pain medication than just what is around their house. I have NEVER read of someone GETTING that diagnosis and NOT being prescribed narcotic painkillers. Now I know it must happen, I’m not denying that these things occur other times too, but I follow tons of blogs, look up tons of personal accounts of things online to help me figure things out and deal with what I’m going through, and it’s seemingly pretty rare for someone to get diagnosed with an injury of this magnitude and NOT get a narcotic script, because it’s just that debilitating. It makes sense… if there is anything that narcotic painkillers EXIST for it is situations like this. And then a person won’t be on them forever if treatment works out, because surgery is often looked at within the first months it seems for some people… nerve blocks and physical therapy are tried for some people, but if they fail, surgery is the next step, and given it’s successful, while it may not fix EVERYTHING, it will set someone back in the right direction and they won’t need narcotics painkillers forever, at least… that’s the idea, I think in most cases.
But then… with me the issue is that I’m not SUPPOSED to have a herniated disc… I was told by countless doctors who flat out REFUSED me an MRI for quite a while before I found one who would even take a LOOK that people my age just don’t HAVE disc issues, I’m must too young, they all had their own ideas on how my issues were my own fault none of which made sense.
And then when I DID find a doctor who would do an MRI and it showed I had a badly herniated disc at L5-S1, there was very little done for me, and a YEAR later… nothing. I HAVE nothing to take, but I can barely even take care of myself for the pain, there are NO plans for the future to do anything to help me. I mean, when we started, he didn’t give me anything when I was diagnosed. I did nerve blocks, and physical therapy. I did the three allowed during a 12 month period, and all my physical therapy. (I, in fact, still do my physical therapy on my own, despite it seemingly making things WORSE and not BETTER.) From there kind of nothing was done. And now he’s ordered blood work to see if I have a connective tissue/autoimmmune disorder, which I think is irrelevant, because I know I have another illness going on, but that’s not HIS issue, I go to him for my back, so I MIGHT have something like that, YES, but my back doesn’t CEASE to be an issue. He’s saying it might not be if I have something else going on, but I know my body, and I KNOW it is. I have the symptoms TO A T, and I have a herniated disc and I don’t think it’s a coincidence. And I was a competitive jump roper, which is very bizarre, and not commonly seen yet, for years when I was younger, which is why this happened. I remember more than a few times specifically when I had severe trauma to my lower back as a result, but then, it’s also just that the spine absorbs ALL of the shock… they say most back problems start in the feet, and I pounded my feet on hard tile floors for hours and hours a week for YEARS, so if the BACK gets all the crap for what the feet do, then I SHOULD have back problems. But my ortho instead of treating me is now trying to pawn me off on another doctor or bide his time until more nerve blocks can be done… I’m not stupid. Because I’m young… and he doesn’t want to risk treating me with narcotic painkillers, and he won’t even go NEAR the subject of surgery. The words “chronic pain” come out of HIS mouth more often than mine, because he has no intention of FIXING this injury, so he knows the pain won’t stop… because the source it going to remain there… it’s like you never put a cast on a badly broken leg, you’re gonna have some issues, except, broken bones WILL heal themselves… maybe not RIGHT, but they WILL do it. This won’t, it can’t. But when I ask about ANYTHING for pain, he’ll just say “WELL, you really can’t treat chronic pain with narcotics…” which one, is a lie… people do it all the time. They don’t have to continue to treat it, but I was given short scripts to deal with migraines before, and my diagnosis of “chronic migraine” has chronic in the name. And I mean, I’m not a drug addict, or anything, test me and see. And really, even logic alone leans towards the fact that it’s better to treat chronic pain with narcotics than not to treat chronic pain, but I’ve read compelling articles and research that say that treating chronic pain with narcotics isn’t the horror story people believe it is. And then since it’s going to be chronic because of your CHOICE not to even lay out the surgical option on the table for me… shouldn’t I get some relief? Or the surgery?
But then… that’s the thing… I’m young so I’m unreliable, a hooligan, impulsive, irresponsible, likely to abuse my medication if I’m given anything abusable, right? That’s how I’m treated. And then I feel like the surgical option also isn’t laid out because I’m young and because of the risks involved, but more for them legally than for me… I feel like they feel as though because I’m young if something went wrong they are more likely to face legal repercussions, than if I was older. It doesn’t even make THAT much sense to me, but for some reason, the only one who really thought it was maybe the right option for me was the doctor performing my nerve blocks, which is weird, because he’s ACTUALLY getting something from me NOT getting surgery, because I can only assume (or hope) that giving epidural nerve blocks was not just a hobby of his or something, it was something he got paid for, his JOB, but he was honest and said that sometimes they just don’t do the trick and that the surgical path is the right one for a lot of people. (Heck , that doc even trusted me enough to give me percocet instead of lortab after my procedures, because lortab makes me puke roughly 2 out of every 3 times I take it when I’ve had it in the past where percocet I don’t think has ever made me puke, even when I haven’t felt like eating and have taken it anyway. He was an absolute SAINT. He should get some kind of award.) So why can’t my doctor be that kind of person who puts all my options out there and let’s me decide how to live MY life? Because I’m the one who has to deal with it for the rest of my life, not him. Even if my doctor KILLED me, most doctors kill a few people in their careers, but most of them learn to distant themselves from it, so they probably wouldn’t even have to live with THAT the rest of their lives… they’d forget me completely. But I have to live with my body and it’s ailments.
The thing is, if I was older, I feel like I could color half my problems with doctors non-existent.
My mom for example, while she has a broken tailbone, was talking on the phone today with either my grandmother or my father, about how she’s not really in any pain, she even TOLD the doctor she is seeing that, but he’s basically THROWING painkillers at her, he has her on work leave, he saw her the day it happened, a week after, and he’s either calling here to check-in Wednesday or has to go back, or something, but she’ll see him again within the next couple of weeks for sure. And I get it’s a more minor faster healing injury, but I mean, he’s going all out, and taking the risks for her to prescribe her different painkillers repeatedly when she even says she DOESN’T need them, which my mom feels weird about, but it goes on HIS record. And then all the looking after and all. I’m fairly sure if it had been been me, the attitude, or even the instructions for me would have been something to the effect of “walk it off, kiddo”, and then I would have been ignored for six weeks, gone back for a follow up, things would have been however they were, and then they would release me because there would be nothing further they could do anyway.
And then my dad is constantly doing things to himself, injuring this or that… he’s had more surgeries than I can count, and my mom has had a couple too. Does anyone ever talk about surgery with me, when it should be talked about because it’s the only logical course of treatment? Uh uh. No. Not my back. Nothing surgical was even laid out at my ENT appointment, despite that several things that might necessitate surgery were brought up, and doctors tend to lay out what MIGHT be a course of treatment at a first appointment from my experience, even if it’s not the first thing they’ll go to. I mean, that’s a subject doctors won’t touch around me, but I mean, with my dad, a lot of his surgeries were things that possibly COULD have been left, and people COULD have tried to treat medically, some of them they could have even succeeded with possibly, but surgery was faster, so you know. I don’t know… maybe doctors just think I have all the fucking time in the world since I don’t work a full time job, I don’t know… but that doesn’t mean I want my full time job to be suffering…
And then the first impression so many doctors have of me is to think I’m a drug seeker, a low life, or that I did this to myself, because kids this young aren’t sick or hurt. A common thing is that they like to think that me being fat and lazy caused all this instead of the other way around, because when this started, I was pretty thin, and active, and there was no reason I suddenly should have had all the symptoms I did… and who would have KNOWN that being in MASSIVE amounts of pain, or being on ridiculous amounts of drugs with the side effect of weight gain, or being unable to move for how much pain you’re in or how sick you are the majority of the time would cause someone to gain weight? I know it’s just unfathomable how that works. -eye roll- And then doctors like to think I’m a drug seeker, because I don’t have the “luck” of having a diagnosis yet (i hate to call it that, luck, because it can come off the wrong way to people, like saying “hey, I WANT to have an illness!”… but I know I’m sick, I just don’t know what it is yet, so all I want is to know what it is, and a diagnosis brings a lot of opportunities and takes away a lot of pressure and bullshit, so in a way, luck is what it can be to someone who has been so sick for so long but who has remained undiagnosed.) and then classic drug seekers complain of a lot of the same vague symptoms I do. I’ve had the “luck” (that is actually said sarcastically) of developing some other symptoms as of late, that aren’t so vague, or commonly complained of I don’t think, and then my herniated disc WAS confirmed, so if pain is a chief complaint, I have at least one reason to be in a very good deal of it that is confirmed so they should have no reason to believe I’m drug seeking, but still because of my age, so many doctors have the balls to think I guess am playing up my pain (when I downplay it so I DON’T look like a drug seeker) or I’m lying about some of my symptoms or I’m not as sick as I let on JUST so I can get drugs STILL, because of COURSE everyone my age would just LOVE to sit around and get shit-faced, right, because it’s not like teenagers EVER just want RELIEF from actual physical agony, or anything, because they can’t FEEL things. They don’t have souls. Or other things they could do other than get shit-faced, so ALL they want is these drugs so they can get high. Oh, no, maybe they want them so they could SELL them too, I forgot… teenagers like money. >.> I mean, GOD. We’re not a different species, or some type of demon, we’re humans, capable of getting sick/injured too, but for some reason, NO doctor ever buys it.
This is just a really long-winded, rambly rant, I know, but I can’t help but think about this a lot. I can’t help but think if I had waited, if I got sick ten years from now instead of five years AGO, then I would be doing so much better now. I would maybe be fine, maybe not as in cured, but as in functioning, because I wouldn’t have been so much ignored in the beginning, and no one would have dared accuse ME of causing this, or treat me like a drug seeker without giving me a chance. And maybe I’m wrong. And 28 is still young, so maybe with my thought process I’m not going old ENOUGH… I mean, I don’t think disc issues or these types of things are all that common in 28 year olds either, so maybe I’d still be treated like I was a demon, who knows? But I feel like a lot of it is because in the eyes of society, I’m not REALLY an adult, even though I legally qualify as one… I’m still a child. One of the nurse practitioners who treats me repeatedly forgets my age and thinks I’m still in high school. So to them I look like a kid, and to a lot of better off adults in today’s world, the kids in society today are something to be afraid of, and to be incredibly wary about. And at 28 at least they’d probably be able to tell I’m not in high school, and I’d have done something with my life maybe and so they would treat me more respectfully and less like a threat.
Doctors are like jeans.
I felt the need to write this up after reading some recent posts from a few people I follow that have been made to feel like crap by their GP’s.
I can’t remember if I read this analogy somewhere or if it’s one of mine so I’m going to treat it as mine.
So yeah, doctors are like jeans. You gotta try before you buy. There’s nothing worse than buying a pair of jeans and then getting home to discover they don’t fit right and that they chafe in weird places.
Well, there probably is something worse than this in the world but just go with me on this.
If they don’t fit right then you abandon them in the changing room. Or you take them home and look at them for a bit thinking “I wish I could wear you” before returning them for a refund.
Eventually, even if it takes a lot of sale searching, you find your favourite pair. The pair that you’d happily wear anywhere, with anything. The pair that fits great and makes you feel good.
Now, I am in no way advocating the literal sale and purchase of actual doctors but the most important thing with regards to your health care is to find a doctor that understands you and that you feel comfortable with. Especially your GP as they should be your first port of call in a non-emergency medical situation.
Even if he/she doesn’t know what to do with you they should be able and willing to refer you to someone who does and not make you feel bad about it at the same time. If it’s not working out between the two of you then it’s time to bid them farewell and move on.
N.B. Jeans that fit your best friend or your mother to absolute perfection still may not fit you. And vice versa.
Man, thank you all for your support. I can’t tell you how much your words helped me out. I’m on the road to letting the whole thing go and not taking it so personally. Having some crappy back pain and leg spasms serve as a fine reminder that regardless of what anyone says, the reality of my daily life is undeniable and telling me I’m fine doesn’t make these things go away.
My doctor says he measures his patients by their best days. I am not sure thats realistic when your worst days interfere with your life plans. The reality of having to change your whole life due to an illness is not something you can deny, or brush off. If anything, I think ignoring those horrible days trivializes the difficult life choices I’ve made and am in the process of making. I am processing these life changes, body changes, and the day to day unknown MS brings into my life. I cannot deny myself the grieving process that is the physical and financial loss of my former life. It IS a grieving process. I am financially and physically incapable of being the person I was 2 years ago, or before the 4 years prior to my MS of wrong diagnoses. I will, most likely, never finish my doctorate and never continue the career path that I had worked so hard for for 14 years. I spent everything I had paying for medical bills incurred during the diagnosis process because I had no insurance when this all began. Those are losses, and telling myself I’m fine and should be able to manage just the same just pushes back the process of acceptance that will get me to the place I need to be to find new life goals and a new “normal” (as one of you so perfectly puts it).
The decision to apply to SSI wasn’t one made lightly. It was one made out of desperation and in an attempt to accept that asking for help ok (something I’ve struggled with most of my life) and needed in order to get myself to a point where I can really process and move on to a life that isn’t dictated by this disease. This fact is what made those words my doctor said hurt the most. I felt like doing that was a positive step, a positive step towards taking back control, when he presented it as giving in. I know, in my heart, that it was anything but giving in. The application process was painful and gut wrenching but letting myself become homeless and leaving my MS un treated would probably have been a much less proactive action. I cannot let that fact, that knowledge, be taken away from me by words said by someone who does not have the whole picture and who does not live in my world.
As I said in a previous post, when I finally got accepted to SSI I thought I’d be free and clear to really move forward. I thought I would be happy and stable and able to decide what the new plan was if I was just able to get by somehow* . The reality, however, was that I had thrown myself into survival mode and the processing and grieving for the big picture I had for my life before didn’t really happen during that time. When I was able to feed myself, had a roof over my head, and health insurance, it all hit me hard. When I took that deep breath and looked around I really took in how much things had changed and would continue to change from then on. So from there I started to let myself deal with those bigger issues (all the while still dealing with the medication changes and stabilization). That was only 2.5 months ago. When I remind myself of that I think Its not so wrong that I might still be figuring things out and I might still be pretty depressed and anxious when faced with these changes.
The truth of all this is that it should take me as long as it takes me to grieve and process and feel my way through this. You don’t get used to waking up with different , new, or old symptoms every day. You don’t get over a the loss of a goal you had on a piece of paper when you were 10 and worked for from the moment you graduated high school (and in reality before that) in any set amount of time. Depression and anxiety are par for the course for all different reasons when it comes to MS and no one should tell anyone that they are giving in.
I do believe that we can lose sight of ourselves sometimes, and that maybe some motivation or tough love or whatever you want to call it can be helpful to some at sometime. I don’t, however, think its your doctors responsibility to judge your ability to cope. No one can tell you how to cope. It doesn’t work that way. And while I do think my doctor had some good intentions, he was coming from a place built on his own opinions and experiences ( I do believe he himself has MS). But like MS, no two people experience things the same way and there should be more care taken to trust your patients and listen to what they are saying without judging based on how they fit into the mold you have created for a model patient (or your own personal experience).
I think its inappropriate to tell someone that they are or are not disabled because of what you believe the psychological impact will have on them. Any good psychologist will tell you that labels, self set especially, can be carried in many different ways positive and negative. An outside party assigning a negative connotations to disability, or assuming that someone has self labeled by accessing resources, is pushing internalized stigmas onto someone that does not necessarily carry such feelings about themselves or the label. More over, deciding that experiencing and acknowledging depression and anxiety, with or without other illnesses involved, is “giving in” or “hindering yourself” can be exceptionally detrimental to an individuals healing process, their trust in their caretakers (which I assume doctors would like since they want you to tell them things or maybe thats where I went wrong.. post for later I think), and cause further distress that may not have occurred otherwise. Its not fair or right.
I preach a lot of these things here daily (anxiety and depression are not separate from the rest of our physiology & we should be treated well by our doctors, and our struggles are real and only we can decide what the best course of action for ourselves is) but I never seem to be quite as strong and inspired when faced with doctors appointments like the one I had monday. hah. Anyway, I’m going to take all the positive I can from the appointment and try and move on.
Thanks again everyone and thanks for reading. you all are the best :)
*don’t let this post fool you into thinking that SSI is a glorious thing. Its barely enough to live on and I struggle to pay the bills every month though hell if I am not grateful as hell for it.
hey @wholegrainlofat.. check this out, seem eerily familiar?
Wholegrainlofat has been accompanying me to my infusions lately and I think she, and I, might have found this funny if the woman who is now my nurse every visit pretty much says things like this the whole time, along with telling me I need to get a life, laughing, and telling the room of chronically ill (chemo, MS, etc) people about how her job sucks and working long hours makes her bitchy. haha.
Luckily @wholegrainlofat and I have the ability to speak to each other in spanish so we can smile and nod at whatever the nurse is saying about my viens, her job, my boringness, etc while bitching to each other about her without her knowing.
yeah, lady, what? your car broke down? you need to go to work? Well no mechanics are taking new cars.. so good luck. We’d put you on a list but it’ll be at least 2 months.. what? you have to work? you have bills to pay? Sorry.
now lets pretend that car you need fixed is broken because it ran you over and stopped right on top of you. Now wait a few months for 911 too. ugh.
Nurse/Secretary/Mean Lady: “I’m sorry, we’re not accepting new patients.. maybe try back in a few weeks if you still haven’t found anyone.”
Me: “I’ve been looking for a month and no one will accept me.”
Nurse/Secretary/Mean Lady: “Well we wouldn’t be anytime soon either.”
Some people should be slapped. That’s one of them. So angry.
Too many of us can relate to this. Thank you for sharing your story.
Its one of the things I’m most passionate about, and in some way prompted my starting this blog. We all know doctors are just people like the rest of us, but relegating us to the “its all in your head” file (which SHOULD NOT EXIST TO BEGIN WITH as our bodies and minds are connected) under the general assumption that the patient is more likely “complaining” “in need of attention” etc as opposed to has an actual problem is just disgusting. If a doctor has become so cynical that they feel comfortable judging their patents that way, using things like make up and other momentary, context free judgements, they should probably hang up their stethoscope. Its its own form of malpractice if you ask me.
No, I’m not hating on doctors. I’m also not assuming that many of us don’t have illnesses that are extremely difficult to diagnose. none of us are really expecting our doctors to just “know” whats going on. The issue is that too many doctors come with preconceived notions about their patients.
The process of my diagnosis isn’t all that different than yours it seems. I was so obsessed with school and where my career took me that I ignored some signs, didn’t have a consistent doctor (partly because of assumptions like “well you’re wearing make up so you must not be too bad off”), and I was diagnosed with several different things before the proverbial shit hit the fan so to speak. When that happened, however, my struggle to find a doctor that would take me seriously (even with optic neuritis) was incredibly difficult. Even once I knew what I had my doctor wouldn’t call back, would blame a “history of anxiety”, etc. and ignore flare ups until I’d end up back in the hospital. It took a lot of strength and frustration to get to the point where I said screw this and found a new doctor. So far it seems to be working out with this one.
Anyway, its incredibly frustrating that we as patients get judged as “fine” for struggling through our pain and making an effort to seem visibly normal or positive, or for not being able to struggle through the pain and get to that place thus being “depressed” but assigned as such in a derogatory non medical way. Depression and anxiety are a huge element in a lot of chronic illnesses, so if thats the case then perhaps our doctors should take notice and not treat it as us “whining” (see past post on mind body dichotomy..). More over, sure there are a lot of people complaining about things, but I’m willing to bet that the majority of people fall on the opposite side of the spectrum.
Ok, really my point I swear: Being sick, going to the doctor, feeling pain or confusion, are not fun experiences. We’re not showing up and paying you a gazillion dollars because we’re bored. You may be frustrated with your job, maybe have dealt with people that annoyed you in the past, but stop for a second and remember that we are PEOPLE, HUMANS, coming to you, VULNERABLE and looking for answers. We need HELP, not judgement, and generally we’re more than willing to work with you in figuring out what the hell is going on if you just give us a damn chance. So please, please, don’t make us worry about your judgements, your assumptions, and your cynicism on top of the problems that have built up enough (for too long for many of us because your colleagues have instilled fear and shame in us) that we called you.
Sorry for the long response. I hope its coherent since I’m pretty damn exhausted and achey at the moment. I could stop myself though, It makes me so angry to read about this happening to so many people.
“It’s all in your head.”
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