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

[soul-our-punk]

I've been reblogging a fair number of disability related posts in recent (when I actually come online). I'd like to take a moment talk a bit about my condition and frustrations around it. (TW near the end: pet death)

I have fibromyalgia, diagnosed by my rheumatologist after our investigation into my Sjogren's antibodies being six times higher than normal came up with no response to medication designed for it. I'm looking to take the test for fibro to confirm it for my disability case and am aware it only can identify one type, so here's hoping I lucked into at least being able to show medical evidence if my joints being fucked up little pain factories.

I've been seeking disability insurance since 2022 and have reached a remand back to the hearing level from the appeals council. I wasn't expecting it, since the judge pretty much twisted my testimony a bunch, my lawyers abandoned me, and I couldn't manage to interact with social security to get access to my C-file due to my condition--neither being able to get through the misophonia triggering ear pierce of the 120+ minute hold music nor mustering the motivation for getting down to the physical location to wait for hours upon hours in hostile seating and overstimulating environment.

It's been 2+ years since my initial application and I've unemployed for 99% of that. That 1% being a grand total of 10 hours at a major grocery chain in what can only be considered a misguided attempt to cope with no income, which resulted in my entire body shutting down with an explosive flare.

Now, my spouse, bless her, has been able to support me through this whole process. Emotionally and physically. I have a lot of gratitude for her. Unfortunately, with rising costs, being a single income home means we've been eating into our savings. More than half of it.

A kind friend was able to get me a job building ikea grade display furniture for a different major grocery chain. It's less than 15 hours a week and at the pay rate I take about 1000 gross per month. The thing is, while it isn't as intense as the other grocery work, it still causes flare ups, including full body migraines which take me out for a day or so.

I was about to get a new lawyer to help with my remand, until they learned I got this gig. Now, I'd been told by my previous lawyers that to qualify for disability (by legal definitions in the US), you can only work part time and make less than a certain amount each month--about 1600 this year. These new lawyers enlightened me that, while true, any amount you make that nears that limit makes your case harder since the judge gives you the side eye.

So here I am, tearing up my body because we can't afford for me to not do so, and it turns out my hope to get income that doesn't require me to tear up my body is at risk because I'm desperate for income. The government really does hope chronically-ill people either die or get starved out of the application process.

The hardest part is that if I don't keep this application alive, I won't be able to apply again, because (say it with me) I've been too disabled to work enough hours to meet the work credits within the past 10 years from the jump of a new application.

But I'm tired. I'm tired every day. I'm too tired to fully engage with things that bring me joy. I'm tired of thinking about how best to convey to an uncaring system how my conditions affect the quality of my life. I'm tired of searching for the perfect combinations of chemistry that can settle my anxiety, audhd, depression, hypomania, muscle and joint pain. I'm tired of brain fog attacking my ability to engage with topics that matter to me. I'm tired of hiding my pain from my family of origin, because I don't want to listen to their ableism. I'm tired dealing with the self loathing. I'm tired of being me.

I've all about given up hope that I'll get at least this one thing to reduce the pain. And that's what the government hopes will happen. Because they'd rather spend more money in an effort to deny than it would cost to just provide the benefit. Nothing is going to change my condition, whether I get disability or not. The truth is I have chronic conditions that will haunt me for the rest of my life, barring a miracle of science.

But the government isn't concerned with the truth, the law is just an arbitrary metric that says you can't be able to lick envelopes or crouch or lift a certain poundage. It's unconcerned whether there actually exists a job that us exclusively licking envelops that has the hours and pay to amount to a living wage. It's unconcerned with how fucked up you feel after bending down or lifting once or twice. All it cares about is finding that one thing that lets them say 'sorry, thanks for playing.' Even if that thing is is twisting around your testimony.

"Well, he plays video games. Well, he has cats." They honestly will purport that disabled people can't have any modicum of joy in their life, have anything to distract from the horrors. They're looking for anything like that to the point that a judge will hear that conditioned ruined my relationship with my dogs that I had before the conditions reached full blown disability, only to turn around and say "well, he is currently raising dogs." My rescues died from cancer 6 months apart in 2017, prick! What the fuck.

I don't know how to end this rant, so I'll just close with I know there is a lot going on in the world right now and I wish I had more energy to put toward taking a stand. There are people I love who need protection and care and support, but I don't have the resources to provide those things. I can't even provide them for myself. We need reform. We need revolution.

[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.

[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!

via Blogger http://ift.tt/2sSt9UA