Chronicles of Life with Multiple Sclerosis
This came across my facebook today and it reminded me of so many people I have met through my journey with vasculitis….
(Source: sarcasmisfluffy)
"The unwell and disabled life asks nothing more than constant bravery."
(via sickgirldiary)
I am done with this pain.
Seriously, seven years is enough.
I’ve had a major busy day today and I’m still not done.
I’ve done the shopping and washing and ceaned out the fish tank - which cost many spoons - and I still need to eat and pack and shower. And I need to be asleep around 11-midnight, to…
This is my 3rd admission in 2 weeks to hospital because of my MS medication has decided to damage my liver, plus I waiting to find out whether or not I have to have my gallbladder out, havent eaten in over 4 days.
I have missed my final exams this week. So I have to re-sit them at some stage and…
there aren’t words.. but understanding and hugs and wishing good things for you. mostly useless I know but its there.
(Source: nobody-can-save-her)
Hardest lesson I still haven’t learned.. when everything changes the ability to accept and move forward in a whole different direction is what I admire most about so many people I know. Respect ya’ll. Hope to get there sooner rather than later.
(Source: crystal-panda)
Taking a massive round of steroids because of the numbness and general trouble I’m having with the right side of my body that impedes my ability to walk and function normally. I should totally be getting some super amazing muscles rather than catching a cold/the flu from them all. Yeah, I know, they’re corticosteroids not anabolic steroids… bah. I don’t want to get sick to not get sick dammit.
sending well wishes.. in the same place.
(Source: silvernmind)
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.
TRUTH
(Source: thispainwontletmerest)