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Tina Yesenofski

@tina_yes

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Human: by-catch-murderer, forest-fire-starter, sea-level-raiser.
#ME #POTS #LongCovid ๐ŸŒˆ
Maker: ๐Ÿงถ @woolandwander ๐Ÿงถ
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I'd like to share that I have been awarded a position as a patient member on the "Lived Experience Taskforce" for another year at the fantastic nonprofit @solve_cfs ! ๐Ÿ’œ I am so proud of the work we have done, and the work we will continue to do for the #millionsmissing from school, work, and life due to the debilitating effects of #MECFS , #LongCOVID, #pots , and other #InfectionAssociatedChronicConditions. ๐Ÿ™Œ If you feel like celebrating with me today, please see the link in my bio to make a donation in my name. ๐Ÿ˜Š We have a donor matching every dollar donated up to $10,000 right now!! Weee! I'm looking forward to continuing to donate as much energy as I can to this absolutely fantastic organization providing hope for millions. . . . #myalgicencephalomyelitis #mecfswarrior #IACCs #disabilityawareness #longcovidawareness #longcovidwarrior #longcovidadvocacy by @tina_yes
9
2 years ago
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Tell me, when did becoming disabled equate to becoming poverty-stricken? I had to resign from my dream job. I now get a disability stipend that is 30% of my pre-illness income. And that is considered "lucky" and "good." . . How would you feel if one day you woke up, and didn't know if you had the strength to get down the stairs for breakfast? Couldn't make yourself dinner? Couldn't stand long enough to shower? Really try. ...and I'll apologize that this post isn't catchy, it isn't super funny, it won't go viral. But it will be real, and it will implore you to make a human connection. My legs started shaking when I tried to go down the stairs. I drove down my one-way street the wrong way (I'd driven down it hundreds of times before). I Just. Kept Sleeping. I was a mountain biker. I was a ballerina. I was a singer. I was a ukulele player. I was a Project Manager. I was a bad ass bitch. (Now I'm just a bitch ๐Ÿ˜‚). Now I cannot do any of those things. 90% of my day involves my bed or the couch. 90% of my day must be quiet. I could go on and on, but the point is I didn't ask for this, it came out of nowhere, and it could happen to anyone. . . . โ€ผ๏ธThe present climate for disease research is implorable. The federal administration is in the process of undermining research by revoking NIH and National Science Foundation grants without cause; capping vital administrative support for research; and slashing hundreds of millions of dollars for research at major institutions. HHS plans to lay off 20,000 employees, impacting work at the NIH, CDC & FDA. All of this will have a ripple effect on scientific research for ME and Long COVID. Horrendous! . . . ๐Ÿ’•๐Ÿ’•๐Ÿ’• PLEASE, like, share this post, and consider donating to @meaction or @solveme this ME/CFS Awareness Day--May 12th . ๐Ÿ’•๐Ÿ’•๐Ÿ’• . . . #DisabilitySOS and #MillionsMissing #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #DisabilityJustice #disability #spoonie #chronicIllness #SaveMedicaid #ProtectMedicaid #mecfsawarenessmonth taken in Allentown, Pennsylvania by @tina_yes
4
a year ago
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I finished my crochet/embroidery quilt square for the collective #forgetMENot #mecfs quilt. My piece is entitled, "I Can't Get Out." I often have dreams that my M.E. is a black, viscous slime with the texture of melted mozzarella cheese and I am trying to pull it out of my body through my mouth; but the more I pull out, the more keeps coming. My M.E. has become an inextricable part of me and I don't know what to do with that information. I want others to take away from my piece that M.E. takes over all aspects of your being. You live with this still beautiful, colorful, vibrant potential, but it's nearly impossible to show it to the world, as you are suffocated by M.E. Thank you so much to @astitchinti_m.e for putting together and managing this wonderful project. . . . Alt Text: First photo: An abstract cross stitch of a sun in pastel and neon rainbow colors, with snake-like black and grey coils wraped around it repeatedly. A glistening glass bead sits in the center. Last photo: Tina, a middle aged white woman in a wheelchair smiling, on the right, another photo of Tina in bed sick with visible dark circles under her eyes. by @tina_yes
9
24 days ago
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Not even I can fully comprehend, after being disabled for 6 years now, how I can have brief periods of moderate function, to suddenly lose it all again. Does anyone accept their repeated transitions from Mild to Severe ME/CFS? Can you focus on gratitude in your worst crashes? How do you describe to the outside world, the dire consequence of every action? (Even rolling over in bed when severe, leaves me breathless & weaker.) How do you describe a Dynamic Disability? Love, Tina #mecfs #myalgicencephalomyelitis #dynamicdisability #disabledandcute by @tina_yes
8
2 months ago
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Scary to post this...will they think I'm a self-obsessed disabled woman? (Add on "sad" "pathetic" "old" etc.) OR will they see this as spreading visibility of "invisible illnesses?" We never know, but we can try. ๐Ÿ’• #MECFS #myalgicencephalomyelitis #chronicillnessawareness #POTS by @tina_yes
3
3 months ago
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The past couple months in pictures. If you garner anything from this, I hope your mind softens it's understanding of what a #DynamicDisability looks like. I hope your mind realizes that disabled people can still smile and laugh, even while in pain. I hope your mind realizes, a person with a disability standing or walking for 10 minutes of photos, does not mean they are able-bodied--a picture represents a fraction of a second (literally) in their world. I hope your mind realizes, that if you see a man holding two machetes in your back yard, you should love him fully, and deeply. @coraycole --oww oww! #MECFS #DisabledandCute #DisabilityAwareness P.s. if your nature-obsessed like I am, this beautiful lavender trumpet flower is from the Empress Tree, invasive in the US, but simultaneously a provider to various birds. by @tina_yes
0
4 months ago
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The real truth is we barely made it to see the #MECFS banner that @pecoconnect graciously displayed for us in Center City Philadelphia, our hometown. Gasping and pausing for the 4-block walk, we finally made it. The message scrolled across the Philly skyline on June 12th, World ME/CFS Day, to highlight the lack of treatments or cure for the debilitating neuroimmune condition ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). Half of us could not even get out of bed to join. The subtle irony is that this is in line with disability rates of this disease, where 25% of patients with ME/CFS are bed-bound, and 75% of patients are unable to work. Too many have suffered for too long. We need biomedical research to find effective treatments/cure! A special deep-felt thank you to @solve_cfs for sponsoring. If you feel moved to help, our advocacy can be supported at the ๐Ÿ’• link in my bio. ๐Ÿ’• #MillionsMissing #lightupformecfs #SolveME MECFSAwareness Description: Two femme people in front of a skyscraper with the lighted up message scrolling across the top: "ME/CFS Awareness Day - No FDA-Approved Treatments and No Cure - SolveME.org" taken in Philadelphia, Pennsylvania by @tina_yes
2
4 months ago
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Today I am raising funds for @meactnet in honor of World ME Day. (Link in profile and another in bio to donate to organizations for ME.) I'd also like to tell you all my story... In 2020, I got a mild virus, and never recovered. Earlier that year, I had backpacked part of the Appalachian Trail; fostered homeless animals; volunteered; held a full-time job as a Product Analytics Manager; danced ballet three days per week; jogged every morning; and visited my friends and family every weekend. Today, I write this from bed. I now use a wheelchair for events or fairs. I can only shower using a shower chair for assistance. I can't stand longer than 12 minutes before my heart rate jumps up 30 beats per minute; I start shaking, and feel as I will faint. My life as it was is forever over. I've been diagnosed with Myalgic Encephalomyelitis (ME). You may remember the name Chronic Fatigue Syndrome, an embarrassment of a name for the original panel who coined it, as most of the symptoms are neurological and immunological. The old name stigmatizes us patients, to where we struggle to even get medical care. With ME, you aren't afraid of getting older, as being more healed or death both sound better than life as it is. I was so close to giving up. So few understand the deep joy that is derived simply from a sense of purpose. They take for granted the huge amount of purpose that automatically comes entwined in their career, family, outings, and travel. When we lose all that ability, and thus purpose at once, it's a blow to our very will to exist. I was told my my doctor that there were no FDA-approved treatments and no cure, so I should go home and process my grieving. This is what we patients are left with, in a world where this disease remains severely underfunded, so continues to have zero treatments, and no cure. #MillionsMissing #FrailandFurious #MECFS #myalgicencephalomyelitis by @tina_yes
11
5 months ago
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Philly representing this International ME Awareness Day (May 12th) thanks to @tina_yes @solve_cfs and @pecoconnect. This message will be scrolling atop the Philly skyline today, tomorrow (May 12th), and Wednesday (May 13th) to highlight the lack of treatments/cures for myalgic encephalomyelitis (misnamed chronic fatigue syndrome and sometimes called ME/cfs)โ€” a debilitating condition involving neuroimmune and metabolic dysfunction, often triggered by an infection such as C19. Too many have suffered for too long! We need biomedical research investments to find effective treatments/cures! #LightUpforMEcfs #WorldMEDay #MillionsMissing #MEcfsAwareness #MEcfs Video description: a video of the PECO building in downtown Philadelphia, PA USA at dusk which has a banner of a scrolling lighted messages at the top. This video shows the message โ€œME/CFS Awareness Day - No FDA Approved Treatments, No Cure - SolveME.orgโ€ by @tina_yes
105
5 months ago
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Random photo dump of the summer. I just realized there is a cat in every photo. 10 points if you can find each one. I think a lot about how pictures can make you look functional. If I have makeup on, people automatically assume I am feeling well because I "look" well. There's some truth, as if I feel well enough to wear makeup, I'm generally on pain meds and not feeling so awful. I've rested a few days, finally well enough to leave the house for a bit. But most times, it has nothing to do with my level of disability. I just like playing with makeup. A friendly reminder to not judge a book by its cover. I could go on and on, but I just wanted to show face. I've been surviving, working on crochet projects, settling into the new house with my lovely partner @coraycole, and feeding 7 cats. Focusing on joy, love, and effecting change where and when I can. Love, Tina #mecfs #endofsummer #disabilityaware #cats #findthecats by @tina_yes
8
a year ago
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My favorite poem from this year's Severe ME Artists Project by #meaction is by the talented @jamesstrazza . August holds #SevereMEDay -- I can't bring myself to use the word "celebrates." Link in my bio to read the stunning poems and beautiful artwork. ๐Ÿ’œ In solidarity with all of us that suffer--9 million in the US alone, and counting. Link in stories & bio. Or search "Severe ME Artists Project" or go here: https://www.meartistsproject.com/severe-me-artists-project-home #pwME #SevereME #MECFS #MyalgicEncephalomyelitis #disabledartist #spoonieart #UnitedforME #openmedicinefoundation #MEAction #SolveME by @tina_yes
0
a year ago
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Thank you SO MUCH to @webelong_everywhere @meactnet and @spacedreamproductions for putting together this beautiful short of real patient voices. I feel heard. I feel seen. I feel empowered. Empowered to continue to fight. Empowered knowing there are others behind me, rooting me on. Empowered knowing none of us are alone. Let's keep it going. #disabilityawareness #mecfsawareness #mecfs #MyalgicEncephalomyelitis #disabitywarrior by @tina_yes
2
a year ago
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