Like water which can clearly mirror the sky and the trees only so long as its surface is undisturbed, the mind can only reflect the true image of Self when it is tranquil and wholly relaxed. - Indra Devi
I hope you can finally see yourself the way that I saw you.
I had surgery a little over two weeks ago, and it triggered a mixed episode.
If you don’t know what bipolar is, its a mental illness where a person experiences periods of depression and periods of mania. Mania is typically viewed as the high but isn’t always fun.I’m on two different medications for my bipolar. An SSRI to target the depression and a mood stabilizer. They were working pretty…
Today marks six years and it hasn’t gotten any easier. I know I say this every year and every year it remains the same. This year is no different from the past. Perhaps this year was worse. There was/is the pandemic and there were way too many instances that I wanted to share with you. Things I wanted you to see. Too many times I wanted to see your response, your smile, the light in your eyes. It has been a very hard year.
We too often take for granted that someone close to us is fighting their own silent battles. Dealing with demons that none of us may ever realize. We often never know until it is too late, the pain that someone is going through.
Someone who was such a bright star to everyone around her, to everyone she met. Someone that was such an inspiration to everyone she talked to. A kick ass superstar of the New York EDM scene. An awesome person that will be missed by more than I know she realized.
Not a day goes by without a thought of you.
We miss you Andrea. I miss you. You were more than just a great friend. You were truly loved.
For those of you out there struggling with your own demons. Please don’t let the fight get the best of you. If you feel that suicide is your only option, please just stop and reach out for help. I know it is probably the hardest thing to do. But please! You matter! Believe me, you matter!
day 508 : be. still. my. . . i’m usually a bit of a (ok, maybe more than a bit?). i’m pretty grinch-y during the holidays, and thanksgiving is just ughhhhvdjskxnrkdjdjd…. . but i’ve found myself feeling an unexpected wave of gratitude the last few days for the short list of things going well right now. . i forgot my cane and parking tag galavanting through the carolinas yesterday. bless @timberland boots for allowing this paraplegic to feel confident over most terrain, especially big gravel like the kind i ate it on about a year and a half ago lol. #walkingparaplegic . i also walked up that big hill in the background, and felt really good about it?!?! . i’m thankful for this sunshine of a man that was a bright light at a very dark time in my life. thanks for being stubborn when i was pushing you away . thankful for two loving parents that came to me when traveling was just too much for me this year. . thankful for the best pup pup that could ever happen to a person with sci. or any person. lucy, i dont know what i’d do without your dragon noises and cute zoomies every day. . also the fact that you’re an obstacle course because you refuse to move from taking up the entire hallway every time i walk by. my dog is daily physical therapy. . in the past few weeks, something has happened to my legs. i got up from a regular height chair with no hands yesterday. also a low-ish toilet. . and about two weeks ago, the top half of my left leg like, came back. sort of like it walked back in from vacation and was like, “what’s up?” it’s the weirdest thing ever. . anyway, i don’t like wine, but i drank wine. and i’m getting better at drinking and walking. . . . #spinalcordinjury #scirecovery #timberlandboots #paraplegic #incompleteparaplegic #thecomebackisgreaterthanthesetback #whatparalysis #moveyourbody #depression #mentalhealthawareness #endthestigma #movember #moustache #ambulatorywheelchairusersexist
day 500 : in recovery - kinda sucks that this one hurts worse than leftie’s surgery. . ethel (rightie) has been falling behind lately in that i can feel the stark difference between lucy’s (leftie’s) almost full sensation, and sometimes hypersensitivity, yet my entire r knee joint feels like it doesn’t exist in space and time, and the front of my shin is mostly numb to temperature and light touch. . going into this surgery i figured more nerve pain and such would be involved in this one. i’m at least grateful for the nerve pain since that means things are damaged, but still firing, right? . so currently feeling like my knee and incisions are balls of fire, and the nerve pain has been onnnnn itttttt since i woke up from anasthesia yesterday morning. . as always, medication makes me loopy af, so not fully with it, which is cool. gives me a tiny shelter from the cloud of depression for a bit. #endthestigma #mentalhealthrecovery . it has been 500 days of paralysis. it has not gotten any easier. but focusing as much as i can in the moment and not worrying about the past or future or planning as much has sure as hell helped me cope. remaining committed to following only what feels good has saved my mind and soul from the living nightmare that i call spinal cord injury. . i am looking forward to both knees recovering and feeling like new again so i can continue my physical therapy and reaching my one and only goal of being able to move better, stronger, faster, more agile, and more capable than before. i’ve been pining for your #trishstrong workout @acfit_4 . nothing else will be acceptable for me. . #500daysofparalysis . . . #icansoiwill #paralysissucks #scirecovery #dominoeffects #takecareofyourdamnbody #walkingparaplegic #bionicbadass #dothehardstuff #incompleteparaplegic #notalldisabilitiesarevisible #disabledandcute #coldtoes
This hurts my heart Another amazing, beautiful life gone because of suicide. If you don’t think we are in the desperate center of a mental health crisis in this country, you’re not paying attention. If you need help, PLEASE seek help. If you need someone to talk to, PLEASE talk to me. Talk to ANYONE. And if you don’t need help, then you may BE someone’s help. Just BE NICE. Listen to each other. Don’t spread hatred and bigotry and horrible things. Spread kindness and light and beautiful things. #EndTheStigma #BeKind
”No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” Professor Rodney Grahame
EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know.
Ehler’s Danlos Syndrome as all to often been overlooked, misunderstood and mistreated. As with many other rare and invisible illnesses. Here are some facts about EDS:
EDS is a connective tissue disorder.
It is something that effects the entire body, it does not just make you extra bendy.
There are 13 identified subtypes, with some being ultra rare.
It is an invisible illness.
It is a life changer.
Not just a ‘minor inconvenience’.
It is valid.
Don’t let anyone tell you differently.
“It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”
It’s EDS awareness month once again and the reality is awareness is not enough.
For those that don’t know EDS is a connective disorder that causes a wide array of symptoms from joint dislocations to chronic nausea and so much more. There are 13 identified subtypes, all but one having an identified gene and some being ultra rare.
EDS has been overlooked, mistreated and misunderstood for far too long. Patients seeking care and understanding are often met with disbelief from the very people who are supposed to be helping us. We as patients with EDS are denied our own experience by our healthcare providers, the very people who are supposed to help us. There are not only chronic health issues when met with a lack of understanding but also psychological implications. According to Loreen Myerson, an anthropologist and a person living with EDS - “The healthcare experience of anyone with EDS appears to be much the same. Almost without exception, negative.”
Up until 1980 Hysteria was a studied psychological disorder that was thought to be caused by female reproductive organs. Women’s pain is all too often dismissed and ignored, a recent study published in a Pennsylvania journal found that women typically wait 16 minutes longer to receive pain medications than their male counterparts in an emergency room setting. A survey of 2,400 women with chronic pain published in the National Pain Report found that 90% of women feel that their healthcare system discriminates against women. Another study found that women who are in the emergency room with acute abdominal pain wait on average 65 minutes before receiving analgesic (painkiller), while their male counterparts receive analgesic wait on average 49 minutes.
I look back at my childhood and all the signs were there, they were just simply dismissed and ignored by the people who were supposed to be helping me. look back at my childhood and all the signs are there. Women are disproportionately affected by EDS. EDS is still overlooked, misdiagnosed and mistreated by the very people who are supposed to be helping us. My story however is not unique, both anecdotal evidence and peer reviewed research are pointing at disturbing trend that it is not at all new, women are more likely to be dismissed and overlooked when it comes to chronic pain and other health issues. In a peer reviewed study published in the Autoimmunity Reviews found that autoimmune diseases disproportionately affect women with 65% of patients being women. 85% of thyroiditis, systemic sclerosis, systemic lupus erythematosus and sjogren’s patients are female.
This is a cultural issue that we must continue to fight for ourselves and those to come, as demonstrated above both my peer reviewed research and personal narrative. These issues are ever present in our society and women’s pain is taken less seriously whether it comes to emergency care or by a primary care physician.
EDS is misunderstood, overlooked and mistreated. But there is so much hope for the future. All of us zebras who are fighting for more awareness. Hopefully in the future it won’t take us on average 20 years to be diagnosed.
Technically, it was 3 years for me… but I was already just into my forties and it took a serious cascade of symptoms to get the diagnosis ball rolling. Looking back, there were clues right back to my childhood so really, it took four whole decades.
This is my medication for depression & anxiety. Today is #WorldMentalHealthDay so I share it with you because I am not ashamed. You shouldn’t be either. I’ve lived with the black dog of depression since I was a teenager. Mental Health issues can affect us all. Lets #EndTheStigma Please be kind to yourself & to others. Remember nobody’s life is perfect, even if it seems like it on Instagram.
