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What does chronic illness look like?

I made this as a visual reminder for myself as I get ready to head back to work after medical leave. This is most but not all of the meds I’ve been on since October. The neb vial bag is from < 1 week of my post hospital regimen. It has been hard to ask for leave and stay home and leave my team behind. What’s more hard are the people who mean well (and the rare nasty ones) but say oh cmon you weren’t that sick it’s just a cough or I came to work with pneumonia, do you really plan to take that much time off? The last 3 months have been miserable. Begging for prednisone when urgent care said but you’re not wheezy, not sleeping through the night, dismissed by EDs and so on. Thank you guys for giving me a safe place and the courage to make basic changes like how I talk to my doctors and even the courage to try new meds. Hopefully this picture will be a reminder to me of what I’ve overcome (asthma doesn’t own me) and a visual way to help people understand the burden of this disease. What does chronic asthma look like for you? 

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  • Melissa G

    Great topic, Emelina! 

    We have people in our house with asthma. So it is juggling everyone's different prescriptions, making sure we each have our inhalers. 

  • Shea

    It is being on steroids in order to breathe– and being stuck on them for 7 years, watching helplessly as you gain 100 lbs when you eat better than u did before and it all goes into your face snd chins and all the stupid words even the medical terms "moon face" "buffalo hump" all weight in your stomach so your pants cant fit right and your poor but need a nee wardrobe… But at least you are alive and get to be here on earth with your child.

    This was me just after being diagnosed– my son was 3 months when I was first diagnosed with churg-strauss syndrome. 120lbs. I was sad because I couldnt breastfeed him after the heart atrack bc i had to be on severe meds. Now Im 198 lbs because of prednisone. People who see me think I am obese and judge me as lazy and a bad eater and ignorant– when in reality I cook all organic superfoods at home and know more about foods and allergies and creative cooking for my son and I's food allergies than theyd ever want to imagine– when walking is a struggle but I do it and chase my son around as I can keeping an inhaler at my side, and clean the house and do the yard working so hard I have to wear a life alert button bc im worried i might faint and teach my son to push the life alert button in case I ever do. 

    When I dont leave the house without a nebulizer and inhalers and epipens and a mask, and a lifealert button. When there is no cure or end in sight. 

    And then somehow people want you to work on top of that… Before disability I went into job interviews trying to hide my wheeze. They all want you to be superwoman, supermom, work for nothing, get no benefits, and put ur kid in a daycare with a bunch of sick kids. And you can barely breathe. Ugh. That was not happening for me. 

  • Emelina

    Thank you Marie, Melissa and Shea for sharing your experience. I can definitely relate to the dark circles and Kleenex and bills, and inhaler wrangling (though I only hunt for mine and they love to grow legs and disappear). 

    Shea, thank you for sharing your pictures and perspective. You are so right, you do what you need to do to stay on this earth for our kids and family. I can’t imagine getting a new rare diagnosis with a young baby and to deal (and continue to deal) with the scary manifestations of churg Strauss. 7 years of prednisone! Wow. It angers me people are still so unkind and cruel and judge a book by the cover. My aunt has severe copd, so have seen the dramatic physical side effects of prednisone that come along with the life saving benefits of preserving lung function and independence.

    Ugh, I have seen disability used and abused through my work, but you are so far out of the realm. It is frustrating to see the donuthole in support for people with Serious/complex disabilities. I knew of a few people who used/abused and gamed the disability system for their own benefit for very questionable “injuries.” It made my stomach churn when they would come in with their forms. But it drives me insane when people who have serious, life threatening conditions that need to be extra cautious (infection risks, etc), are pushed too quickly into working when working in the wrong setting/situation could cause a life threatening event or provoke a flare. (Sigh). Hang in there. I think I saw on another topic that you have a disability review coming up and more testing? I will keep my fingers crossed for smooth sailing and good news. 

  • Shea

    Thanks Em– yes I do have a review and its making mevso nervous! From what I read, I will likely pass it fine, but that small chance it wont has just opened up a can of worms in my mind. Thank you for the kind words and just the reassurance that what we with chronic illnesses go through is really hard.

  • Deborah Bartlett

    Chronic illness looks like me. DON'T LOOK!!

    It means being on a strict medication schedule. It means seeing doctors quite often. It means spending money I don't have. It means remaining calm, so I can breathe. It means not eating certain foods after late afternoon. It means treasuring each day because I am chronically ill. It means realizing that 1/4 of the people I know understand….the rest do not. It means being grateful for this forum…which is wonderful!

    I am in stage one of COPD…I have severe persistent asthma…also nocturnal asthma. 

  • Pljohns

    Having a chronic illness means you have to get tough skin…people laugh, point fingers and are just plain nasty BUT then you find a group like this that so totally understands and then you don't feel quite like a freak of nature.

    It means setting alarms for around the clock nebs, not sleeping from the pred, those lovely dark circles under your eyes, the chronic cough that makes people look at you like your TB must be acting up.  It's also tough when your own family doesn't understand.  DH and the DS's are good but my parents and MIL, not so much so it makes life tough.  when people don't understand, you end up putting yourself last because you don't want to listen to the crap they dish out when you try to explain that you can't do something and getting blessed out because you have to say no to family functions.  Sometimes it's pretty tough BUT everyone here gets you through the tough times and for that, I am FOREVER GRATEFUL

  • Deborah Bartlett
    Pljohns posted:

    Having a chronic illness means you have to get tough skin…people laugh, point fingers and are just plain nasty BUT then you find a group like this that so totally understands and then you don't feel quite like a freak of nature.

    It means setting alarms for around the clock nebs, not sleeping from the pred, those lovely dark circles under your eyes, the chronic cough that makes people look at you like your TB must be acting up.  It's also tough when your own family doesn't understand.  DH and the DS's are good but my parents and MIL, not so much so it makes life tough.  when people don't understand, you end up putting yourself last because you don't want to listen to the crap they dish out when you try to explain that you can't do something and getting blessed out because you have to say no to family functions.  Sometimes it's pretty tough BUT everyone here gets you through the tough times and for that, I am FOREVER GRATEFUL

    This too funny! I have this picture of a guy who is like family to my family. You have to laugh! 😄

  • Emelina

    Oof, sometimes family doesn’t even understand or can make you feel weird (unintentionally). I guess I hadn’t used ventolin around my dh for awhile. We were out with the kids and I started to feel things tightening and the cough started, so I did 2 puffs before things got outta hand. He asks as I’m doing the second puff, so how many puffs you gonna do, that seems a little excessive! Aggghhh! As much as I’m a “I don’t care what people think” I guess I do sometimes go out of my way to hide using my puffer (run to bathroom, office, corner of a store). Education education education … begins in the home. 

    thanks deborah and Lynn for sharing your experiences. I can definitely relate to the “Tb cough,” treasuring each day, going to doctors and watching the bills pile up and the gratefulness to have this forum of strong people to look up to and gather strength, courage and inspiration from! 

  • Melissa G

    Emelina, do you think your husband would watch a free online  Maybe it would help him to understand things better. 

  • Emelina

    Great idea melissa! Maybe we could do the online course together. I know I can’t get mad at him for not knowing the rx, but I can help educate. Brilliant! 

  • Wheezy Me

    Thanks everyone for sharing!

    My asthma… well, it doesn't have a face. It's a part of life. Those 10 years (or so) of remission taught me how it is not to have asthma, but when it came back, I just learned to accept it and step on. I value the ability to breathe better. I'm more aware of air quality and of the unique needs of different people.

    As a child, the face of asthma was watching cartoons (muted, as to not wake up whoever was still sleeping) during very early morning with the neb's calming noise in the background. Surprisingly, it is a good memory. I guess my brain just wiped off the unpleasant ones, lol.

     

    Shea, I'm sorry for the side effects you have from prednisone and about the way others judge you. I know it sucks. I have battled weight (unrelated to steroids) and related medical conditions since childhood, clearly genetic, and yeah, it sucks being the one that watches what they eat like nobody else and still people treat you as lazy and irresponsible. It was hardest at the beginning but I still remember. This IS a chronic disease for me. Some people simply don't know to appreciate what they've got.

    But you know what? Thanks to that I lead a much healthier lifestyle, which is a great gift regardless of weight. I exercise and enjoy that too. There is a silver lining to every cloud… we just have to keep looking.

    Don't forget that we know what you're going through. Be strong!

  • Shea

    Thanks WheezyMe! I had to be on prednisone in highschool too for ulcerative colitis and it was worse because the kids would just say mean things to me about my cheeks and apoearance, and I just let it roll off because theres no point in talking to jerky kids. But my friends and family would also treat me different and that hurt more. My one friend would tell me to straighten my back up and stop slouching all the time– I tell them its the prednisone and they act like Im making up excuses. It's annoying. Sometimes I just want people to stop trying to fix me and just let me be as I am without any comment at all.