Every few years I have to prove I'm still disabled, still poor, and no one has cured #MS
So tomorrow I have my first SSI re-qualification interview in which I have to prove to a stranger that a miracle hasn’t occurred, no one has found a cure for Multiple Sclerosis and I still have no income, am in incredible debt and haven’t won the lottery. WOO! Then I get to do it all again next Tuesday!
And of course they picked the day I have two doctors appointments to go to immediately after, both of which stress me out… I mean.. why worry about things like that when interviewing the chronically ill, disabled people on your list.
While I haven’t been blogging here to avoid falling into an illness absorbed spiral (and focusing instead on baseball…Go Red Sox!). The vaccine I was required to get before starting Gilenya made it possible for this post. Yes. this post in which I share that I have the freakin’ chicken pox. 34 years old and I have the chicken pox for the first time. To be fair thanks to the vaccine its a mild case… but it sucks and I’m sure I’ll end up getting the shingles in a few years anyway.
Thanks MS! you are forever making my future New York Times Bestselling memoirs more interesting. heh.
You can be perfectly fine - almost feeling normal, even. And then It comes. It comes and whispers:
You’re sick. You’re never going to be normal. Who are you trying to fool?
It makes you miserable, on top of whatever your body’s latest rebellion is, and drags you down so far that all you can do is lie there and stare into space. You’re not crying, you’re not even sad…just dealing with reality:
Look at yourself! Everyone sees how you really are. Your scars, your dark circles, your weakness…you can’t hide it.
It isn’t going to go away.
Everyone tells you “Get better soon,” but we both know how likely that is…
It is a permanent state.
You’ll never be better…
It pulls at your deepest fear:
You’ll only get worse.
And all the positive talk in the world can’t make It go away…not easily, and never permanently.
Starting a new drug is always an adventure. The list of side effects are often repetitive and sometimes the SNARK just has to be released.
What is Baclofen?
A muscle relaxer and an anti-spastic agent used to treat muscle symptoms caused by multiple sclerosis, including spasm, pain, and stiffness.
Important information about Baclofen - Baclofen may impair your thinking or reactions.
- Be careful if you drive or do anything that requires you to be alert.
Pass me the remote.
- Drinking alcohol can increase certain side effects.
Let me guess, being alert and having balance?
- Do not use Baclofen at a time when muscle tone is needed to assure safe balance and movement, it may endanger your physical safety to be in a state of reduced muscle tone.
When exactly would someone “choose” falling down? Stunt double is not on my resume.
- Using Baclofen may increase your risk of developing an ovarian cyst.
I’m good here. Fresh outta ovaries.
- You should not use Baclofen if you are allergic to it.
Ummm. Is there a way to know this before I take it?
bwahaha you are made of win.
Other side effects include:
an increase in space needed for orange bottles with white caps that are indecipherable from one another
inability to differentiate between falls related to side effects of the drug, effect of the disease itself, clumsiness, and /or stuff left on your floor due to decreased muscle tone (caused by this medication).
a reduced ability to tolerate bullshit side effect sheets
its recommended that you remain prostrate, in a pile of kittens, within view of a tv, in a location with quality internet access. Failure to do so can cause the drug to seem ineffective.
consult your doctor when they aren’t in a bad mood and think you’re imagining your symptoms.
A diagnosis of multiple sclerosis (MS) is a hard lot. Patients typically get the diagnosis around age 30 after experiencing a series of neurological problems such as blurry vision, wobbly gait or a numb foot. From there, this neurodegenerative disease follows an unforgiving course.
Many people with MS start using some kind of mobility aid — cane, walker, scooter or wheelchair — by 45 or 50, and those with the most severe cases are typically bed-bound by 60. The medications that are currently available don’t do much to slow the relentless march of the disease.
In search of a better option for MS patients, a team of UW-Madison biochemists has discovered a promising vitamin D-based treatment that can halt — and even reverse — the course of the disease in a mouse model of MS. The treatment involves giving mice that exhibit MS symptoms a single dose of calcitriol, the active hormone form of vitamin D, followed by ongoing vitamin D supplements through the diet. The protocol is described in a scientific article that was published online in August in the Journal of Neuroimmunology.
"All of the animals just got better and better, and the longer we watched them, the more neurological function they regained," says biochemistry professor Colleen Hayes, who led the study.
MS afflicts around 400,000 people nationwide, with 200 new cases diagnosed each week. Early on, this debilitating autoimmune disease, in which the immune system attacks the myelin coating that protects the brain’s nerve cells, causes symptoms including weakness, loss of dexterity and balance, disturbances to vision, and difficulty thinking and remembering. As it progresses, people can lose the ability to walk, sit, see, eat, speak and think clearly.
Current FDA-approved treatments only work for some MS patients and, even among them, the benefits are modest. “And in the long term they don’t halt the disease process that relentlessly eats away at the neurons,” Hayes adds. “So there’s an unmet need for better treatments.”
While scientists don’t fully understand what triggers MS, some studies have linked low levels of vitamin D with a higher risk of developing the disease. Hayes has been studying this “vitamin D hypothesis” for the past 25 years with the long-term goal of uncovering novel preventive measures and treatments. Over the years, she and her researchers have revealed some of the molecular mechanisms involved in vitamin D’s protective actions, and also explained how vitamin D interactions with estrogen may influence MS disease risk and progression in women.
In the current study, which was funded by the National Multiple Sclerosis Society, Hayes’ team compared various vitamin D-based treatments to standard MS drugs. In each case, vitamin D-based treatments won out. Mice that received them showed fewer physical symptoms and cellular signs of disease.
First, Hayes’ team compared the effectiveness of a single dose of calcitriol to that of a comparable dose of a glucocorticoid, a drug now administered to MS patients who experience a bad neurological episode. Calcitriol came out ahead, inducing a nine-day remission in 92 percent of mice on average, versus a six-day remission in 58 percent for mice that received glucocorticoid.
"So, at least in the animal model, calcitriol is more effective than what’s being used in the clinic right now," says Hayes.
Next, Hayes’ team tried a weekly dose of calcitriol. They found that a weekly dose reversed the disease and sustained remission indefinitely.
But calcitriol can carry some strong side effects — it’s a “biological sledgehammer” that can raise blood calcium levels in people, Hayes says — so she tried a third regimen: a single dose of calcitriol, followed by ongoing vitamin D supplements in the diet. This one-two punch “was a runaway success,” she says. “One hundred percent of mice responded.”
Hayes believes that the calcitriol may cause the autoimmune cells attacking the nerve cells’ myelin coating to die, while the vitamin D prevents new autoimmune cells from taking their place.
While she is excited about the prospect of her research helping MS patients someday, Hayes is quick to point out that it’s based on a mouse model of disease, not the real thing. Also, while rodents are genetically homogeneous, people are genetically diverse.
"So it’s not certain we’ll be able to translate (this discovery to humans)," says Hayes. "But I think the chances are good because we have such a broad foundation of data showing protective effects of vitamin D in humans."
The next step is human clinical trials, a step that must be taken by a medical doctor, a neurologist. If the treatment works in people, patients with early symptoms of MS may never need to receive an official diagnosis.
"It’s my hope that one day doctors will be able to say, ‘We’re going to give you an oral calcitriol dose and ramp up the vitamin D in your diet, and then we’re going to follow you closely over the next few months. You’re just going to have this one neurological episode and that will be the end of it,’" says Hayes. "That’s my dream."
I REALLY wanted this to be good but oh god this was so boring. Michael J Fox seems like a dear but this just seemed like they were only relying on his disease. Shame NBC passed up Mulaney for this.
To be fair the pilot made me so excited that chronic illness was being addressed on TV in a real way by someone who actually had one…
I almost exploded, and ignored posts about the show…then ep 2 happend and I realized its still TV and the point has to be forgotten until it gets cancelled in a few seasons or something. oh well. Shame on NBC? I say way to acknowledge reality, and as it was pointed out to me in my ignorance, a population of people that aren’t usually represented by actual people with actual disabilities but actors pretending to have them. heh. still episode 2 sucked it if you ask me. all sense of realism went away and I wish I’d ordered pizza. but I don’t shame NBC. I am pleased they gave it a go at all.. and maybe it’ll pull itself back. who knows. Either way, I am sad all I’m reading about this show is on the TV shows tag and none on the chronic illness tag. Maybe I’m missing some failboat that left the harbor a while ago. Wouldn’t be surprising. happens all the time.
I’d be cool with some funny business too when I don’t feel like death…and it’d be cool to have someone that doesn’t want to avoid me cause I feel like death but not in a smothering way… well you get the point… or not but.. its all mostly Liz Lemon FTW chronic illness or not.
From my own experience only, here are a few simple tips for those talking with, working with and befriending folks with chronic illnesses— especially invisible illnesses. Some of these could apply to people with other disabilities too— but not all of them. Please do consult materials more specifically oriented toward disability to enrich your knowledge of that, as well. There is crossover— some folks with chronic illnesses are disabled, and some people with disabilities have chronic illnesses— but not all disability is also illness. For example, using a motorized chair for mobility may or may not be related to illness. I’m not equipped to address more than a fraction of these experiences.
Tips for Respect: Understanding Folks with Invisible Illnesses
Don’t argue when someone comes out to you as chronically ill. Don’t say “But you look so healthy!”
Don’t jump to offer solutions that you have heard of from a friend, on the internet, or on the news. People with chronic illnesses have tried, or are trying, many solutions to get better. They may be damn sick of the process but are doing their best. They have heard of a big portion of the miracle cures out there. There is no one who wants it more than they do. You are not likely to be the golden ticket to their wellness. Leave the magic-solution-to-everything that you heard about recently and engage as a human being.
In a similar vein, don’t criticize lifestyle. Try to refrain from pointing out that the person could do better for themselves. Again, the challenges faced by the person are probably beyond your knowledge.
Take them seriously. A chronic illness is not just like the bad flu you once got over or the time you got depressed for a few weeks. Having a chronic illness changes one’s life in radical ways. It often implies grief and loss.
Don’t worry if you don’t have anything to say, or you can’t relate. Acknowledge what the person is saying and indicate that you hear them. Often, folks with invisible illness keep their complaints and frustrations bottled up inside. If you can, make space for the person to vent if they need to.
If you yourself are up for it, make a standing offer of real help. Offer to lighten the burden. It might not be accepted— for a variety of reasons. For example, I hate to feel like an imposition — so its hard for me to accept, say, an offer of free housework or dinner as much as I might want these. (For me, I’d love it if more people offered in ways that didn’t make it seem like a burden to them. For example, a trade, or something we do ‘together’ where they do most of the work. Even when I am exhausted and in pain, I love to cook, garden or work on projects— I just can’t lift or move so much.)
Ensure people with chronic illnesses, or disabilities that affect access, can participate fully in decision-making even if they cannot do the same quantity or type of work as others. In groups, people with fatigue, pain, or mobility issues cannot always express their commitment through attendance of meetings. Recognize that there may be other, equally important indicators of commitment and investment besides the ones able-bodied and non-chronically ill folks typically display. Be open to meeting via teleconference, or conducting some conversations online. Take input from these channels just as seriously as input from those who can be physically present.
Keep in mind that bike culture, commenting on the evilness of cars, and disparaging television and other sedentary activities are all a lot easier to do when you are fully able bodied.
Consider low-energy activities, too. Try being open to being with someone and not doing much. Just talking, watching a movie, or eating a simple meal or takeout can be relaxing and valuable. It can be very stressful for a chronically ill person when it seems like maintaining friendships requires way too much energy.
Remember that you cannot see pain or fatigue. Ask. Listen.
What would you add to this list?
Don’t take it personally if they can’t go out, don’t call sometimes, etc. That takes energy too and sometimes we have to choose between talking to friends and family and having dinner.
I did it to myself: Taking responsibility when self care is not a priority. A giant unedited incoherent word vomit really late at night while waiting for meds to kick in...
Note: This is a serious word vomit, unedited and will probably be so incoherent I’ll be horrified later and intend to edit/delete it but not actually do it because I have overloaded myself like an idiot.. which is what this is about. so hey, just keep on scrolling.
Had high hopes for this weeks blogging etc but well … life exploded and because I am still not capable of knowing, acknowledging, and expressing my limitations to others, I’m doing too much and paying for it dearly.. while still clawing to fulfill the expectations I let be put on me for a long period of time.
People will say ‘well you look good’ and mean it as a compliment.. People will try to understand and very seriously try and respect their understanding of our limitations. The problem is that they are incapable of understanding them on any real level.
Even people that know me well can’t understand what it really means when I say I don’t feel ok. That when I say I’m tired, I really mean I’m on the verge of tears and collapsing on the floor. Some of that is simply what it means to live with an invisible illness, but some of that is me.
I’ve never been one to say ‘I’m on the verge of tears and collapsing on the floor’, I say “I’m just so tired” and thats it. I can hope that those that know that I’m chronically ill can interpret that to be more sever in some sense than if someone else said it… but with an invisible illness people don’t always remember, or place the magnitude on it that you are meaning.
Many of us use this as a coping mechanism. A ways of trying to convince ourselves that maybe we don’t mean it in any other way, or that if we “don’t look sick” we can pretend we aren’t and somehow that will make us function as though we aren’t.
Problem is thats never the reality. No matter how its perceived or what extreme our verbalizations of how we feel are or aren’t, it will all reach critical mass because we are chronically ill, we are disabled.
I’ve always been good at taking on too much, wanting and agreeing to help with everything and anything and even now, in my 30s and chronically ill, not truly being able to say no. NO. Those two letters together are a magical thing. They are life saviors, heart breakers, alienators, and a level of self care that is too often the hardest to achieve.
We can hope that somehow our explanations of pain, fatigue, cog fog, balance issues, sight issues etc will resinate with those we love. We can repeat our metaphors, our spoon theories to people who ask us what its like, people who know us and wonder why we take some of the actions we take. We can hope that those who know us can read between the lines enough to understand when we’re saying we’re not ok, when we hesitate when responding to ‘how are you’ or when asked ‘can I do anything’ and response is a slow but ultimate no. We can hope, but we can never expect.
Thats the point of my post tonight. We can never expect and we can try and explain, hope, provide ‘rules’ but we can’t expect understanding from individuals who have no way of conceiving. Theres a line I’m treading here I realize. I’m not at all saying that we shouldn’t have expectations of our loved ones, of strangers even. There is an element of awareness, acknowledgment, and humanity that we should expect from all individuals. We should fight ableism, demand our doctors listen to us when we describe our symptoms, expect to be taken seriously and never let others demean us for what we can and can’t do at any point. But there are things that, after some time living with a permanent and chronic illness, we need to demand of ourselves. Please know that I am mostly writing this to myself after the last several months. We have to say no, we have to say we can’t and we have to be ok with it. WE. meaning *I* have to stop agreeing to do things I know, even though I don’t want to accept, are beyond what I’m physically capable of. I need to protect whats left functioning of this body through self care and personal respect. I need to be able to hear ’ well you look good’ as a compliment AND be able to say I DON’T FEEL GOOD AND I CANNOT DO THAT BECAUSE I WILL DRIVE MYSELF TO HOSPITALIZATION AGAIN. THAT has to be ok with ME. I should and do expect that its something that others who care about me and well.. aren’t assholes.. will respect.. but I have ti be the one to say that. I have to be the one to accept that I cant’ do it all, I couldn’t before I got this sick and I definitely can’t now. I need to be able to respect myself enough to say that and not drive myself into a depression. I also need to be able to say no without it being an assumption that I will never be asked again and/or will never have the opportunity to say yes again.
There are these moments that come and go and, I know I’m not alone here, I over think, over analyze and over do so much. Its my personality. I was born of a workaholic and I was one from as far back as I can remember. More over, I was the helper. I don’t know how to hear a problem and not try and fix it. Its a sick, and if you think about it pretty arrogant, personality flaw that now is also detrimental to my health. I can’t always fix it, I can’t be everyone’s go to, I can say no, and if that ends a relationship, work, friendship etc, then its not one I should be in anyway. I’m 33 years old and I’ve been working on internalizing this for ages.. but I can tell you today, I haven’t even come close. I may be better at verbalizing responses to things I don’t like or agree to, but I still passed out twice, was hospitalized and continued to push myself because I said I would do XYZ. Thats me. I did this to myself. I should most definitely say “no, I’m sorry. I cannot do this because I need to rest, I have xyz else I need to do for my own well being and if I put them off to do your XYZ I will be back in the hospital”.
Honestly that last sentence? its shouldn’t even require that much explanation. The financial expectations and attempts to push myself there are a bit more complex, but thats for another day. If I can’t start by explaining to those I love, and who claim to love me, that I’m not the same person both mentally and physically and while I may have been the go to girl, the one who’ll give in and say yes, in the past I cannot be that anymore. If I can’t say that to them, and reinforce it with a NO I can’t, and expect them to still love and care about me? Then I can only expect these frequent flare ups. Its not self blame. I know it might sound like that a bit, i expect those I love to learn and cope and then understand and act accordingly. I do. I guess I’m just angry with myself. I’m angry with myself because I still seem incapable of pushing that. Of saying no in a straight forward way more than just once. I expect that understanding, but I can’t expect mind reading and I can’t expect others to stand up for me when i’m skirting an issue myself.
I can’t say “well I guess I can do that, but you know I might get sick so maybe you should have a back up… but you know I’ll be there” and expect that to be interpreted as a “NO! I’m SICK. I already feel like shit and I am overwhelmed and I need you to know thats what I mean when I hint that I might not be totally ok with whatever”. Thats not fair. Its not and I have done this my whole life and fought to change myself and yet, I still fucking do it. Just like asking for help, i don’t know how to do it, it comes out like a passive comment, and the responses I get? I did it to myself.
So yeah, I had high hopes for blogging this week. I had topics and I planned to do the 30 things meme (Still do actually) but I got in over my head, and then even more over my head, and then the shit hit the fan even more. So yeah. Some reblogging and this giant ass word vomit for today. Thank goodness I have someone close to me that is reasonable and called me on some of the aforementioned BS I pull.. and is helping me out. So tonight I will sleep in my own bed, I will take the damn pain meds, and I will do what I can and not more than that. I hope this is something can do instinctively *before* everything gets this bad… at some point in my damn life… Cause this story is getting REALLY old after 33 (very very soon to be 34) years of life.
So I had a really unpleasant experience on Saturday night - a woman harassed me in a movie theater because of my guide dog and her perceived notion of “blindness.” I was going to blog on it, and I still might, but the whole issue got me thinking about something related that deserves discussion.
It’s not talked about as much as other “-isms” (racism, sexism, etc). Some might say it’s because it happens less, it’s less prevalent, etc. But I don’t think so. I think people need to talk about it way, way more than they do now, and in a very different.
When most people think of ableism or discrimination against disabled people, they think of distinct, extreme, obvious things - disabled people being rejected for jobs they are qualified for, for instance. And while that happens, I don’t think the average person realizes the ableism that occurs in every day life.
Here’s an example from my upsetting encounter Saturday night.
After being harassed by a woman who was accusing me of faking my disability and threatening to call the cops to the theater, a worker approached me and asked me for “proof” that my dog was really a service dog. I informed that asking me for proof is illegal in the US as many service dog users self-train their dogs and wouldn’t have “proof.” She assured me she believed me and was on my side, but if she was going to report the woman to her manager, she knew her manager would ask if she got “proof” from me first.
Sounds logical, right? I mean, she was just trying to protect me.
Except not really.
I had done nothing wrong. I was within my rights to have my service dog. I hadn’t even complained about the woman harassing me yet. *I* was the one being attacked - and yet, *I* had to provide ID and proof that I was disabled/my dog was a service dog. If the woman had called the police like she threatened, she would have been the one in trouble, not me. If the theater was really on my side, they would have stood up to the woman, regardless of my “proof.”
Sadly, there’s this odd perception that people “pretend” to be disabled to get perks.
No, really, there is. After telling this story, I had numerous people tell me “Well, they have to ask for proof because people take their non-service dogs places.” I won’t say this NEVER happens, but I will say I doubt it happens very often. And, on top of that, even service dogs can be asked to leave any facility if they are misbehaving/clearly a threat.
But, as I said, lots of people seem to think abled people fake disabilities. I’ve been yelled at numerous times for “faking” my blindness because I “looked” at something. Well, yeah, I did look - because I have some remaining vision. But people don’t know that. They don’t know that 90% of blind people have some remaining vision. And before they ask questions, they make decision. They place themselves as the morally correct and attack the person they assume is doing something wrong.
This opens up a whole topic of invisible disabilities that I don’t think I can go into right now. But, just FYI, invisible disabilities are a thing.
So you’re probably think “Well, I get all that - I wouldn’t do that - I’m not ableist.” But more there’s more to it than that.
This post is getting lengthy, so let’s get into lists. Okay, here are a few ableist things lots of people do with no ill will or intent that are still offensive/inappropriate.
1. Using phrases like “What are you, blind/deaf?” Even if unintentionally, it implies that blind/deaf/other disabilities are bad things. Or that only someone with those disabilities could do something like run into a door, not hear someone yell to them, etc. It turns the disability into an insult.
2. Referring to non-disabled people as “normal.”
3. Telling a disabled person how “amazing” or “brilliant” they are for doing normal things or just being alive - I don’t know. Strangers tell me how “amazing” I am for going upstairs. It’s obnoxious.
4. Assuming a disabled person won’t enjoy doing something because of their disability rather than asking them. (See also: assuming a disabled person’s limitations rather than letting the person state their own limitations.)
5. Assuming a disabled person requires your help before asking. (It implies the disabled person isn’t capable. Always ask or, even better, wait to be asked.)
6. Describing a disabled person by their “struggles.” So, like, in books where half the narrative is about how HARD it is for that disabled person because of their disability.
7. Talking to a disabled person only about their disability - keep in mind they have full lives outside of their disability.
8. Speaking on behalf of people with disabilities instead of letting them speak for themselves or asking them how they feel about something first.
9. Attempting to relate your abled experience in a conversation about disability. For example, during conversations about blindness, I’ve had numerous people say they “get it” because they once did an exercise where they were blindfolded for x-amount of time. Not the same thing, guys.
10. Whining about “perks” disabled people get (special seating, special parking, boarding planes first, getting extra time on tests, getting to take their dogs everywhere, etc). Abled people are privileged, and none of these small things makes up for that for those of us with disabilities. Also, even if you can’t SEE a disability, it’s best to let it go. Again, not all disabilities are visible, and disabled people are frequently accused of lying when they aren’t. It’s stressful and upsetting.
So yeah. That’s definitely not ALL of the smaller ableist things that occur in daily life, but maybe a few that will get some people thinking. Also, I”m very open to having a discussion about this. I am not the “voice” of disability (oh, yeah, let’s add an eleventh note - Saying things like “my cousin is disabled and he isn’t offended by….” No one speaks for the whole minority group. We all have different perceptions) so if you want to add or if you disagree - I’m open to hearing it.
In the mean time, thanks for reading this massive, massive tumblr post.
Sometimes I forget that normal person sickness is a thing and get really confused when it happens to me. I’ve had a sore throat with swelling for the past three days, and it just occurred to me that maybe I should go to the doctor because this kind of pain isn’t actually incurable and there’s potential for a doctor to be helpful. Huh.