Chronically Something
Chronicles of Life with Multiple Sclerosis
I hate feeling stuck and I hate when my attempts to pull myself up by the bootstraps end with me on my ass feeling stupid and useless
I wish your to-do list would disappear when you’re feeling your worst and the cognitive fog is like a white out blizzard. Or maybe I just wish I knew how to stop trying to do things when I feel like my brain is suffering from white out conditions. heh. I never learn my lesson and I always try to do things anyway and it always ends up just like it did tonight: I fuck everything up 1000x more than they were and end up creating tons more work for myself and/or ruining something I’ve been working on forever. oops. heh.
Granted I’ve been in a steadily worsening flare for 3+ months now but I should clearly be demanding steroids not just “pushing through” in ways that only lead to further stress, disheartening events, and later worse symptoms. Thats just stupid (I’m winning at stupid!). Seems that in this state even the good things go wrong.
Tonight my attempt to save my portfolio, after what I realized (even in mental haze) was not just *my* malfunction but actually my back up drive failing, ended in disaster. Not only are my back up files gone but I managed to not save but delete the entire wordpress site and the msql database associated with it (aka everything). I tried restoring it but dreamhost says there are no backups to restore from. Thankfully I got some text back from the wayback machine but really thats sorta crap without the dv files. I can reshoot images of my more recent sculpture work.. but my senior thesis from emerson (actual 16mm found footage spliced together then digitized with found audio) is not so easily retrieved. I don’t have the equipment to digitize again.
I’m so pissed at myself since this was all in an attempt to back up and update my portfolio so I could apply for an open auxiliary position at a co-op artist studio near my home. I thought it would be a really good thing for me, motivate me to get involved, have some accountability, have the ability to show work in a physical setting. heh oops.
Add to that the fact that I’ve been on the phone with SSI, federal and state, for about 8 hours a day for the the last 3 business days (and will be again starting tomorrow) re: a potential job. The people I’ve been doing side work for, that have been paying me via pay pal, really like my work. They have a new investor and he wants to make it official (despite my protests that its more complicated for me than that) by hiring me and giving me steady hours. Theoretically? AWESOME. They like me! they really really like me! For a workaholic like me its a dream come true!
Well, seems that even if I find a job like this, that lets me work 10 hours a week with the flexibility of working when I feel capable (cause I can’t do steady hours ), the net 400 dollars a month (thats 10 dollars an hour before taxes so wouldn’t actually be 10 dollars an hour) disqualifies me from disability income and reduces my health benefits by 10 fold.
I don’t even know what to say to that. I guess I should be grateful. I mean, that extra 400 dollars a month (if we pretend it is actually 400 dollars since in reality taxes will make it at least 1/3 that if not less and I love taxes don’t get me wrong) would put me at 1100 a month which clearly means I’m rich and don’t need any help! I should be able to support myself on that, pay for food, rent, utilities, gas to get to and from what are at least 2 doc appointments a week, feed my tortoise (or should I not be allowed to have a pet even an emotional support animal), all easily even if my monthly copay for copaxone goes up into the $100s and its just one of 10 prescriptions I fill every 28 days. I don’t need to eat anything other than ramen noodles, clearly I shouldn’t expect to have internet or TV now that I’m chronically ill (despite the fact that its the reason I’m homebound forever). These are luxuries I’m feeling far too entitled to. If I can try and pay for those things then I should be able to have a full salary and work 9-5 even on days I can’t see or walk! Its clearly my fault that the 6 years I worked at a research institute right before my symptoms got undeniable didn’t pay into the proper federal funds that would allow it to count towards regular disability. It doesn’t matter that I’ve been working since I was 15
:::bitch-rant-moan-im still pretty damn privileged-still grateful-also stil lbitchy::::
Anyway, its been a long week, 3 months, year etc heh and tonight I feel like throwing something and yelling FML. I’ll get some perspective back tomorrow.. It could be so much worse and so many people close to me are dealing with so much bullshit I am humbled by them and feel guilty even bitching a little.. cause really this isn’t “new” per-say. Its my life. Forever and ever. Still, I just feel like I’m going to be “head barely above water” forever simply because I had the wrong job and got diagnosed at the wrong time. I hate feeling stuck and I hate when my attempts to pull myself up by the bootstraps end with me on my ass feeling stupid and useless. Eh. Lamesauce.
Anyway, hope I wake up with perspective (that is not induce by any traumatic incident) tomorrow. If you managed to read this far by accident, masochism, and/or boredom well.. I can promise you this: you can all feel safe knowing that I’ll be on the phone with gov. agencies for so long tomorrow/this week that I won’t have time to post long whiny incoherent posts like this for at least 5 business days. :-D
Dear Friends/Family Members/Coworkers/etc of the Chronically Ill.
It is NOT hard to accommodate a spoonie.
It is NOT hard to treat them like a human being.
And for fucks sakes, it is not okay to refuse them access to places just because you’re worried about them or their health.
You do not get to tell them to stay at home just because you are worried they’ll get sick in public.
You do not get to tell them what to do just because you help take care of them.
You do not get to dictate their actions just because you feel like you have some call over them, thanks to being their “family” or whatever.
If you’re worried about them -
TELL THEM.
if you’re afraid of a certain situation-
MAKE PLANS.
But FOR FUCKING FUCKS SAKES,
you do NOT, do NOT get to tear away their future, their plans, and their joys, just because you cant have the human DECENCY to treat them like a goddamn human being.
wow chronic pain
I can barely turn my head to the right, nor can I tilt it down. I thought it was on the verge of calming down but it’s starting to spread down my back and into my right shoulder. (said shoulder also feels like it’s rolling on freaking gravel when it moves. jesus. fucking. fuck.)
AWESOME because I don’t need to look down at my books another 12 hours today to review and then take this stupid chem test.
God damn it I need the money for the PT I’m supposed to do to either resolve this or justify the medication strong enough to control it. Oh my god this hurts so much, and heat/ice aren’t helping… neither does the Meloxicam combined with acetaminophen. Jesus.
My kingdom for some fucking insurance.
As if being young and sick isn’t bad enough, I really think doctors don’t treat people who are young who have certain problems like they would if they were just older.
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)
SO here’s a bit of an update <3
I haven’t really felt the need to go on tumblr with all the shit happening right now but here we go - I promise I’ll be back eventually and thank you to my followers who haven’t unfollowed me over this stupid shit :)
- I am almost 100% sure I have hyperthyrodisim thanks to rebif…I have all the symptoms and my blood work came back off the other day with my thyroid anyhow.
- I got denied AGAIN for disability - I go back to work next friday but I work as a CNA who gets no breaks and never gets to sit down for 8 hrs a day and now 32 hrs a week - how is that going to work? I have heat sensitivity and my job is 90 at all times because of the elderly and air conditioning is broke.
- My 2nd denial letter told me they used my age, education etc against me…thanks for blantly saying you have discriminated me AND my disease again. I went to college for a fucking year…that didn’t give me any advantage for a new job assholes. ECONOMY sucks and no one is hiring and it’s also going to be hard to find a new job when state denies you insurance - and god only knows what the new employer would say with my health issues and possible callouts.
- I’m so fucking livid at everyone and everything - I just want a simple life. For the state to tell me my disease isn’t disabling even though I have trouble walking, numbness, tingling etc I can still find work pisses me off. I worked hard for my money and IF I feel like I need disability to get by in life than give me the shit I earned. I’m not fucking with the system - I’ve been out of work for a year and no income whatsoever. My mom has been paying for everything and it’s shitty because I NEVER have help with my bills - I’m the one that has to help my mom with a lot of the bills because I make more than she does.
This is all unfair. /rant.
I hate when people tell me how lucky I am that I get to sleep till 1pm and they have to work ALL day. It’s a bit rude, I can’t work right now and I don’t go to bed till almost 5 am every night and I still don’t sleep sound. I’m also sick today so how in the world does that make me lucky? Trust me I’d rather be working my 8 hour shifts than be sleeping.
have I reblogged this already? I might have.. but I agree so much I want to reblog it every freaking time I read it. reblog
(Source: murder-otica)
I hate when people tell me how lucky I am that I get to sleep till 1pm and they have to work ALL day. It’s a bit rude, I can’t work right now and I don’t go to bed till almost 5 am every night and I still don’t sleep sound. I’m also sick today so how in the world does that make me lucky? Trust me I’d rather be working my 8 hour shifts than be sleeping.
(Source: murder-otica)
Want to know something I really hate?
I would stand up and cheer but my knees are killing me. Hells yeah.
People I know but don’t know well enough (read: classmates, coworkers) saying this shit: “geez aren’t you always sick?” “you get sick a lot, there must be something wong with you?” “you’re sick again? *eyeroll*” or better yet when a teacher refuses to believe me I was sick AGAIN and gives me this nice condesending look and pats my shoulder “aren’t you always sick?”
Yes, I am always sick! EVERY. SINGLE. DAY. OF. MY. LIFE. Does it always show? Nope, I can be healthy for months at a time but see my blood likes to think of me as an enemy okay? I am sick a LOT but I don’t need to be reminded by your STUPID comments. I have enough to deal with without you questioning me or reminding me or, worse even, making me out to seem like I’m LYING. Oh and once I tell you I have a blood disorder and you mention how your mother/sister/uncle/best friend/aunt/whoever has some sort of disorder and they’re not sick half as much as I am? Well whoofuckinghoo for them because I’d LOVE to be in their place!! A MILLION TIMES OVER. But you know what? I’m not because sadly, for one reason or another, this thing affects me a CERTAIN WAY. Why do you even ask if it turns out you don’t believe me anyway? Why the need to doubt and mock me? Why not let me be? Do people think this is easy or fun for me? That if there was some pill I could take to make this go away and be able not to get sick monthly I would? That I LIKE spending my money on hospitals and medications… bitch please, I still want my playstation three but health comes first.
Just leave me alone and go be a judgemental asshole SOMEWHERE ELSE.
Also, I am sorry you find it amusing that on top of this I am also allergic to a LOT OF SHIT. I am sorry that I ask you nicely to please not smoke around me because it sets my allergies off which can make my already fucked up immune system go HAYWIRE. Yeah, it’s a lot to handle to be around me, thanks for reminding me… not like I live with myself TWENTYFOURFUCKINGSEVEN.
Okay, done ranting now.
(Source: hellolluna)
About Me
Thoughts, ramblings, and unsolicited advice about life with Multiple Sclerosis / Chronic Illness, by me and other people on the internet.
Because sometimes it feels good to be able to say "oh man I can relate".
My background. Brief history of how the shit hit the fan, when the shit hit the fan. Written then from that POV. Lets call this link some context to this blog
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