#in fairness the things that can flare up my chronic illnesses include things like

[starzki]

"I'm worried about bias" "my aim is to be consistent and fair" in your attempt to avoid bias you so blatantly demonstrate your bias against disabled, mentally ill, and working class students. You know what doesn't count as an "unavoidable personal emergency" for most teachers? A flare up of chronic pain. A week where you have work on top of school almost every night. Not having any food at home. Bad mental health days that prevent you from getting out of bed, much less complete assignments. Living in an abusive situation! I can't tell you how many of my missing assignments in middle school were because of things happening at home that I could under no circumstances talk to teachers about. All the other examples are things I've seen real, valuable people do poorly or even drop out of school over. You know who's more likely to deal w those problems? Students of color and LGBT students! You will never know everything about your students lives; it's not a bad thing to be flexible and not jump to the assumption that every student who turns in assignments late did it because they're lazy and think they deserve more than other students. If you're not in it to help ALL of your students succeed, why even be a teacher?

As I said, I’m human and I do what I can and I believe I respond with compassion to my students. But the original post that I responded to said teachers that don’t allow late work deserve death and what is the point of not allowing late work? That’s what I responded to. That original post said nothing about any of the issues you discussed, so I was addressing late work in general. That you decided that I must not include mental, physical, and emotional health conditions (including abuse) that do not allow for turning work in time in my description of “unavoidable personal emergencies” (which, to me, definitely are) is on you.

[rum-and-shattered-dreams]

Personal ramblings and continuing frustration with art block...

Some days I can’t ignore the actual very terrifying underlying reason for being depressed and having anxiety.  I have tried so many times to prove people wrong when they said I’d never be able to make it on my own.  Doctors said I’d never be able to work full time or go back to college because of my chronic illness in 2001.  They said I’d probably be dead by 30 but I’m still here.  I found my own ways, outside of their prescriptions (which gave me brain damage and didn’t actually help anything.) to manage things and survive but I believe the root cause of everything was never touched upon.  I believe the stress from trying to conform while having no idea that I’m on the Autistic spectrum caused my illness to flare up.  Maybe if I’d known earlier, a lot of my life would have been different.  (But I’m not even going to go there because I didn’t, it wasn’t, it’s over now, and there’s nothing I can do to change that past.  I just want kids now and future kids to have a better experience with a more knowledgeable society.) And now it’s becoming more and more apparent to me that I can’t prove the friends who said things like “I can’t imagine you living on your own” and “what are you going to do when you’re 30 and still living with your parents?  You don’t want to be that pathetic person, do you?” wrong.   I had to quit community college once because I couldn’t keep food inside me for nine weeks and nearly died.  I did make it through an eight month technical school and managed to get a job in my field for a while but the company went out of business right around the time I figured out that every day was leaving me a little more drained than the last.  I probably would have had health issues again if they hadn’t gone out of business.  Other than that, I’ve worked retail and had to take breaks from full time hours when my health took a downward spiral again until I finally had to quit that too. Anyway, what it all boils down to is that I’m trying to come to terms with not having the mental/physical capabilities of functioning in a full time job which also means constantly not having enough money to afford living on my own.  I’m pretty good with household things like cooking and cleaning but if there’s more than basic bills to pay I start to get overwhelmed with that too. And of course there’s the inevitability that my parents won’t be here anymore someday.  I don’t have any siblings and to be honest, I haven’t seen any other family members in so long that if I met them at random, I’d have no idea who they were.  Not that that would happen since they all live in another country.  So quite honestly, I don’t know what I’m going to do.  I don’t make friends easily (but I love the few I have) and probably will never have a significant other because apparently there’s something inherently off-putting about me even if I try to look nice.  And being a sex-repulsed asexual doesn’t help (but it really sucks when you do crave romantic physical and emotional experiences.  Ha ha ha what does it feel like to cuddle?  IDFK...) I simply don’t know how to interact properly and the lag in my comprehension of things (especially spoken words and physical signals) means I’m always slow to pick up on what’s going on and even slower to react and my reaction will most likely be inappropriate in some way.  All of that means that it takes more energy to interact with people and makes interacting with groups nearly impossible.   As an example - I love the idea of D&D style tabletop games and I love listening to people play but if I try to play, my comprehension lags and I end up a nervous wreck who can’t even figure out which side of the D20 is actually facing up.  Someone else would have to help me add things if there’s multiple rolls involved.  So, while half of me wishes I could find a group and join a campaign, the other half just stays home because I don’t want to drag them down and make them have to pause every time it’s my turn to do something.  And then probably pick something dumb as an action and be completely boring because I can’t think fast enough to be funny and am overwhelmed by everything.  So basically, I’ve always known I’m not invited.  And I get why.  And I don’t blame anyone for it and I try to make it easier for them to feel like there’s no obligation because why should they have to make special accommodations for me?  It’s not fair for me to make an entire group have to change the way they do things.   So I just try to stay out of the way because I’d feel uncomfortable with people having to sacrifice anything to include me  (which is a much deeper feeling than it appears on the surface.  I want to be able to keep up.  I want to be able to do what they do and when I can’t and others have to treat me differently, I feel like a humiliated child so, believe me, I know it’s not other people who are a problem and I don’t want anyone to feel guilty or anything.  I know other people try the best they can.  But, there’s probably nothing anyone else can do.  I know it’s my problems and I’m the only one who can do anything about how I feel.)  And that’s where the suicidal ideation cuts in and I have to fight against my own brain. At the moment I’m at least useful for helping my parents with things around the house.  But when things inevitably change, I don’t know if I’ll be strong enough to fight my own brain anymore.  I know what my options are for things I can do when the time comes as far as continuing to survive (sell things, move into a smaller place, try to find a job that doesn’t kill me, probably move out of the US since I’m not a citizen here for the reason that I’ll probably move away at this point because there will be no reason to stay.) but I don’t know if I’ll be strong enough to actually do them and to do it alone. And this is probably causing a lot of my recent art block.  I’ve been trying to get better at it but suddenly I don’t know why.  I probably won’t be healthy enough to find a job or go back to school.  And I’ve hit this point where there’s something about all of my drawings, something about the curves and angles of my lines or the overall feel of it that I really hate and I don’t know how to fix it.  I know it’s not good enough.  I know I’m not there yet.  And I feel like I’m still stuck back in art class when my work was never good enough to be accepted to the gallery shows and the only time it was ever displayed was when we were required to have a piece displayed.  Somehow I always miss when there’s a zine looking for works and whenever I do happen to catch one, I’m not accepted so clearly I still have a lot of practicing to do.  I’m not willing to open commissions yet because people don’t even want to request things from me most of the time (Super thanks to the people who do!  I appreciate it so much.  I really do want to get better and you’re helping me practice.) and I know part of that is that I don’t send requests to others because I never have any good ideas (hence why I need requests).   TBH when there was a call for Gravity Falls fan artists on twitter, part of me kinda wished someone might suggest me but part of me is glad no one did because if I’m not good enough for someone to have done that, then I’m not good enough to do whatever it was they needed an artist to do.  And I’m just at that point of frustration where I don’t know what to do next in order to move forward and get better or if there’s even a point to it. It’s getting harder every day to make myself sit down and do daily drawing or look for tutorials and classes to try to make some sort of headway but I don’t want to stop because then I’ll never get anywhere.  I’m trying to fight and stay as positive as I can but sometimes I just get tired and start to wonder why I’m even bothering to try because it stops being fun when the frustration kicks in.  I need it to be fun again, I guess.  Maybe I’ll get there again.

[dragonsatmidnight]

Okay, we're going point by point here, because I feel like this is such a SHIT TON of bullshit that I'm gonna need a bulldozer and an essay.

One! People don't need to know about my condition to not bother me. They don't need to want to help me, to be interested, to get a health history, or really, be involved, in anyway, in my life, other than STAYING THE FUCK OUT OF IT. I have almost passed out MULTIPLE TIMES because people wanted to stop and have a conversation with me about whether or not I needed to be parking in the disabled spaces.

It is detrimental for my health for people not to know these things, and it is not asking too much for them TO NOT TALK TO ME ABOUT WHETHER OR NOT I NEED MY PARKING SPACE. I have many different reasons for needing my parking space. It's everything from the smoke conditions are horrendous and if I want to not have a massive asthma flare and buy my groceries, it's better if I can walk into the store while holding my breath to, I will fucking murder someone because they are between me and the little electric scooter that means I can actually buy my food. Random in betweens include, put the gatorade in my face or my body will put itself on the floor, I sprained/strained/dislocated something and didn't want to hop into the store,

I am never going to politely excuse their behavior, because, and here's something I've managed to figure out in my 24 and some change rotations around this Earth, IT'S RUDE TO ASK STRANGER ABOUT THEIR MEDICAL HISTORY. I get this about my service dog. I get this when I use a cane some days and not others. I get this when I stand up out of the power scooter I was using because I have things to do other than wanting food.

Two! Politeness doesn't freaking matter. People will or won't learn when they choose to do so. I've given a good smile, my best, oh that's a really personal question I don't like to talk about it, and gotten told that I was so rude, and how could I not want to answer her SIMPLE question. This is an encounter I literally had, almost word for word. I was polite, she didn't change. Polite education won't matter until people are ready to hear it. Someone getting pissed at them might make them more ready to learn.

It's not fair, and it's never been fair. People will leave, people will leave you to your own devices. None of my friends care if I get angry at some person who's head is so far up their ass they don't need a dentist, because they understand what being chronically ill is like.

You never owe someone politeness for being rude to you, or treating you poorly, or being ableist.

Ever.

"Stupid shitty normal people”

I’ve only been on here for a few hours but I keep seeing this everywhere. I’m paraphrasing of course. Most of the time it’s stories about how people don’t understand what Lyme really is and then the writer chastising those people as though it’s unacceptable.  Here’s the ugly truth… It is acceptable. People don’t have to know about your condition. They don’t have to care about your condition. They don’t have to give you special concessions and pander to your needs just because you struggle on your own. Even if you’re so ill that you would die without help, they don’t have to help you.  This illness is yours, not theirs. It doesn’t matter if it’s the 1st time or the 8th time a person asks you why you’re parking in a disabled parking space when you don’t look disabled. It’s not acceptable to lose your temper. It’s not acceptable to insult them or arrogantly call them ignorant or to go home and rant online about ‘that asshole at the supermarket’. The fact they’re asking at all shows that they care about helping disabled people.  Either take your time and explain it to them, bringing a little more understanding to the world, or politely excuse yourself with a quick “It’s a subtle disability but my disabled badge is on my windscreen to prove I’m disabled, if that’s what you’re worried about.” This doesn’t just apply to disabled parking misunderstandings though. It applies to everything. When people say “you’re looking well” they mean it as a compliment, even if it just sounds like “are you really ill?” and it echos what you’ve been told by doctors over and over.  When your friends are annoyed with you cancelling your plans last minute. “Couldn’t you have given me a bit more warning!?” I know that the answer is “No, I can’t give any more warning. I don’t know how I’ll feel until the time comes.” but that doesn’t give you the right to disregard your friend’s discomfort. If they have to make half an hour to an hour’s worth of bus journeys just to head home again then that’s a massive waste of time for them and they’re allowed to be upset about that. At the end of the day, you’re the one that bailed on them, so it’s your prerogative to say you’re sorry.  It’s not fair. It’s never been fair. Your illness isn’t just about having to suffer daily while everyone else lives normal lives. Your illness is also about grasping at straws, trying to fit into that normal life, trying to be a part of your friend group when ultimately you’re going to fail, time and time again. You’ll lose your friends, you’ll lose your hobbies, you’ll lose your career, you’ll feel like a burden, you’ll BE a burden, you might even lose your family. None of it will be your fault. At no point will you have a choice. That’s just your bad luck…  There is hope though. There are treatments available with some records of success. There are doctors willing to help. There are other people like you who will empathise with you. Some of your friends might stick by you until you’re well. You might make friends on your good days and not be totally alone. There are government benefits schemes and support agencies to help you. There’s even a chance for finding love and starting a family of your own. None of it will be easy and it won’t always work out but it’s all possible.  So don’t give up hope, but always remember that this is your curse, and it’s not wrong for other people to be ignorant or selfish. 

[coffeewithmom]

Homie, Lover, Caregiver?

Yesterday I got up got dressed, put on make up , and did my hair for the 1st time in over a week. As I was getting ready recounting the fact that my New Year began with a trip to the emergency Room I realized something. You see I was getting dressed to go on a date with my boyfriend to say thank you for how well hes taking care of me while I've been sick. Dating someone with a chronic illness is not the easiest thing. When you hear the term care giver you often think of adult children taking care of elderly parents, or parents taking care of young children , or even in some unique situations Foster families etc... but what happens when you become the care giver in an intimate relationship? When my boyfriend and I met I had a small waist, big smile, and the energy of a fireball.  Things were great for quite a while and while I told him that I suffered from chronic illnesses it never really affected anything that we  Wanted to do together. It wasn't until my 1st bad flare that he realized what my illness really  Meant for us. To my friends I dubbed him #HomieBae , To my family he was the most solid man that I have had the joy of dealing with, and for me he became a true friend and partner and for the 1st time I could see myself building a lasting future with someone since my divorce. Now I know relationships are lots of up's and Downs but this past year not only found me more progressive in my disease process than ever but also questioning all of the things that I wanted for my life including being married and having children.  The thought of asking someone to commit to hospital visits, medications, side effects, mood swings and so much more for the rest of their lives and then having the audacity to ask them to add into that a child which is a lifelong commitment had me feeling extremely selfish and undeserving. But as I looked myself in the mirror yesterday I couldn't help but smile at the progress we've made together both through tough times And communication issues. Putting on my make up I recalled him sitting in that chair next to my hospital bed falling asleep and knowing that I had my best friend with me so I would be OK. But I constantly have to ask myself is it fair of me to ask him to be not just my friend, not just my lover, but also my care giver. Is it fair to ask him to adjust his�� Lifestyle, as well as his own dreams because of the limitations that my diagnosis will  Present?  I find myself asking can you still find me attractive when my condition makes me put on weight and I'm no longer that size 3?  I ask myself is it realistic for him to want to be tied down to someone with so much uncertainty in the future?  Is it right to ask him to compromise what homes we choose because of  Mobility issues, what jobs we take because of my mounting medical bills, what trips we go on because I'll spend so much of them sleeping, and even what friends we keep because they just don't understand what we go through?  When he approached me in that bar on his birthday he couldn't have imagined that the girl in the red dress would force him to evaluate his manhood in so many ways and for that I wonder if I should ever say, I'm sorry? While he provides me with everything I need including his love and affection I look at him tired after a day of overtime knowing that he's doing the best he can and understanding that he still feels like they're so much more he has to do and I realize that he feels that way because he feels like he has to take care of me.  But am I taking care of him?  We talk about marriage and  He says hes not ready and my friends can't understand and my family doesn't believe it but he says it because to him marrying me means being fully responsible for someone who may be 100% reliant on him and he fears he just doesn't have what it takes to do it all which is a legitimate fear one I've often shared because it's too much for me even at times and I am the one who ultimately has no choice. Relationships are give-and-take but am I taking more than I'm giving? Lacing up my heels which are torture to be in with my spasming back and swollen knee joints I realized that my brief pain is worth it just to see his smile when I walk down the stairs because he's appreciative of my effort to look good for him for our night out. He tells me I don't have to and should change into more comfortable shoes because he loves me no matter what I'm wearing but part of me feels like I must do this to give him at least one night of normalcy. I want to give him at least 1 night to be carefree and show off like someone his age should be able to.  After a great night out I know he's expecting a nightcap lol and while mentally and physically I'm exhausted again I just want to give him a reminder of why he fell for me in the 1st place so I take a deep breath and mentally prepare my body because I know I'll enjoy it and try to clear my mind of all of the guilt that I feel for not making our one night out his everyday life.  It's funny because I think back on all the years of heartbreak and failed relationships where my health never even came into play and sometimes I find myself angry that I finally get the love that I've always wanted and now we have this huge stumbling block. I get frustrated that every conversation starts with how are you feeling  And I'm reminded that my answer to that question will dictate his every action going forward that day. He is not a talker, or overly emotional  So he doesn't get into how all of  This affects him unless I ask to which he often just replies it's hard but we're good . He gives me a reassuring smile but I can see the  Tiredness in his eyes and I pray that the love that I have for him shows so that 1 day he doesn't tire of us. Being my friend comes easy to him,  Being my lover he treats like gift,  but being my care giver that was a choice, a choice he makes everyday without complaint so I went to bed last night both thanking God and thanking him for not applying for the job of care giver but doing it so well that I could never imagine him not filling the role. Chronic illness is tough, it comes with both mental and physical hurdles but it's the unsung hero called caregiver that helps you through it. So to anyone reading this who is going through it as the one diagnosed remember to thank those that choose you inspite of it all and those who take on the additional role in the relationship as caregiver I salute you. 

 #blacklove #CoffeeWithMom #thatsmybestfriend #DatsBae #contentcreator #twitter #womenbloggers #blackwomenblog #joinmyjourney #linkinbio #share #dreambig #bloggerloveshare #bloglife #instagram #tumblr #chronicpainconqerer #autoimmuneassasin #FibroWarrior 

[consulting-celiac-in-the-tardis]

How to Stop Feeling Guilty for Passing Down Your Chronic Illness

New blog post! I was reading one of my favorite celiac disease support groups on Facebook when I saw it: a post written by a heartbroken mom whose 9-year-old had just been diagnosed with celiac disease. "My heart is breaking because I literally gave my son celiac disease," she wrote.

My response? As crazy as it sounds, in many aspects, your son is lucky...and you should try to replace your guilt with guidance. 

What do I mean? 

My Chronic Illness Family Story

Let's take a quick look at my own family history. My mom has fibromyalgia. I was diagnosed with it at age 11. My dad has the celiac disease gene, but it's never been activated so he can eat gluten just fine. I, on the other hand, became an "active" celiac at age 17. 

It would be a lie to say that my parents haven't ever felt guilty for passing down their chronic illnesses. My mom once told me that she felt nervous about having children because she didn't want to pass along fibromyalgia and the daily pain that came with it. As for my dad, well, we didn't even know that celiac disease was in our family history until I was diagnosed. As I struggled through a liquid diet, extreme weight loss and being hospitalized shortly after my 18th birthday, though, I know my dad hurt with me. Not only because he loved me, but also because it was his gene that landed me in a hospital bed. 

It's also impossible to deny that you are - literally - one of the causes of celiac disease in your child. Celiac disease is hereditary. If you have the celiac disease gene (and there are two possible genes - the HLA-DQ2 and HLA-DQ8 - involved in the celiac disease genetic equation), you can pass it to your children. In fact, people with a close family member (parent, child, sibling, etc) with celiac disease have a 1 in 10 chance of developing celiac disease as well. Scientists are also reporting genetic components in several other chronic illnesses - including fibromyalgia.

However, if living with a chronic illness for 10+ years has taught me anything, it's that support is everything. One of the hardest parts of living with an invisible illness like fibromyalgia is that it's hard for other people to "get it." I look normal, so how can I be in pain all the time? I can run like everyone else, so how can it take me extra time to recover? I seem like a typical college student, so how can I need at least 10 hours of sleep every night? 

But ever since I was little, I've had my own fibromyalgia warrior only a few steps away: my mom. She believed that I was in pain, even though eleven years old is ridiculously young to be diagnosed with fibromyalgia. She has taught me the magic of heat packs and Icy Hot and craniosacral massages when I'm having a flare-up. And when I'm feeling like it's not fair that everyone else is "normal" and I'm just struggling to think through the "fibro fog" (basically a continuous brain fart), she's there for me to call, commiserate with or hug. 

I'm lucky enough to be blessed with a gluten free foodie-in-arms as well. When I went gluten free for celiac disease, my mom went gluten free with me and discovered she has gluten intolerance. When we go out to eat as a family, I'm not the only one enviously staring at the bread basket. When we find a new gluten free bakery, my mom and I are both jumping up and down (sometimes literally). And when I've been glutened, my mom knows how much it can suck. 

Parenting a Child With Chronic Illness? What You Should Know

What am I trying to say? If you have celiac disease and passed along your celiac disease inheritance -- heck, if you have any chronic illness that you "gave" to your child - focus less on feeling guilty and more on how your can help your child thrive with their new diagnosis. 

You already know the best meals and brands to enjoy on the celiac disease diet. You know how to navigate social situations awkwardly filled with food you can't eat. Your knowledge of celiac disease symptoms may have even helped your child undergo celiac disease tests before their intestines were damaged any further.

True, if you have the celiac disease gene but it hasn't been activated - meaning you don't have to eat gluten free and may not even know any celiac disease facts - it can be harder to fight the guilt. You may feel like the blind leading the blind as you learn how to keep your child safe in a world full of gluten. You might even ask yourself, "Why does my child have to deal with celiac disease and not me?" However, you can still be the best thing since gluten free bread for kids with celiac disease.

Like this post? Tweet it out by clicking here: "This #glutenfree #celiac shares how to stop feeling guilty for passing down your #chronicillness. http://bit.ly/2rOySL4 via @collegeceliackc"

How? My dad is a prime example. He doesn't have celiac disease, but he researched it like a pro after my celiac disease diagnosis. He reminds me not to eat the tomatoes from his crouton-filled salad when it slips my mind. He's always game for trying new gluten free restaurants ("as long as it's not just full of hip vegan food" anyway!). He advocates on my behalf when I need a helping hand, and he never makes me feel like my celiac disease diet is a burden. 

Research has found that family support increases the odds of someone thriving with celiac disease. This aligns with other reports that social support improves the health of those with chronic illnesses. In fact, social support has been linked to better blood pressure control for people with hypertension, fewer cardiac issues for those with heart disease and less joint pain and inflammation in those with arthritis. 

The Bottom Line of Helping Children with Celiac Disease (or Other Chronic Illnesses)

Are you ever going to be able to totally erase your guilt? Maybe, maybe not. Even if you considered the odds of giving your chronic illness to your kids, you might not be emotionally prepared to see your child's blood test for celiac disease turn up positive. 

Is this situation - seeing your child struggle with the same chronic illness as you - ideal? No. But will your child have tons of support along the way? YES. 

And sometimes the unconditional love, support and guidance of a parent can make all the difference...

How have your parents, siblings or friends helped you with managing celiac disease or another chronic illness? And if you're a parent of a child with a chronic illness, tell me your thoughts in the comments. I'd love to hear them!

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