There’s something so important about the way you write. It feels honest in a way that soooo much writing doesn’t anymore, and it always leaves me thinking about my own life differently afterwards. Really grateful your words exist
This is another beautiful piece. I have spastic quadriplegic cerebral palsy, Tarlov cyst disease resulting in intractable nerve pain, vulvodynia/chronic pelvic pain/severe pelvic floor spasticity and sudden, frightening UTIs related to neurogenic bladder, so I float in a few parts of the disability and chronic illness realm. So much of what you have written is so moving and relatable... while not "everything happens for a reason" and not all suffering must become a gift, it's just true that this experience with illness, chronic pain, disability, and loss has in some ways, created a better me. If you never have, I highly recommend Pain Woman Takes Your Keys by Sonya Huber. It is haunting in the best way and saved my life when nerve pain was consuming my existence. Thank you for sharing your story.
Thank you for the rec (amazing perfect title 🥺) and for sharing- I am holding you in a a healing glow. Also, as a fellow sudden UTI sufferer, people don’t realize how all consuming and genuinely terrifying they can be. I always say I’d rather almost any other illness than a sudden bladder infection. How have we been able to freeze wrinkles using botulinum and not been able to figure out how to prevent UTIs!? 😭😂
No joke, Cipro is a tough drug and can cause elevated risk of tendon rupture in people with muscular disorders…🫠
My understanding is there is a UK based vaccine called Uromune in development for certain UTIs. When it becomes widely available I will be waiting on line like I’m about to win a ticket to the Wonka factory 😂
Has vaginal estrogen suppositories helped at all .. I’m so sorry for your pain - chronic UTIs seem another much needed update on research . I’m guessing you’ve already tried it all that plus D-Mannose , Uva Ursi but just in case - know the vaginal estrogen helped me a lot. Wishing you both relief
Lena you’ve created a beautiful community- thank you.
And Famesick - may not know the fame but sure know the sick and damn girl you nailed it - there was not one wasted word … Thank you - for waiting and releasing that canary out of its cage at just the right time. 💛
Yes the estrogen actually has helped even though I’m not in the typical age range for the estrogen treatment.
But I’m kind of a weird case because I have an abdominal catheter channel called a mitrofanoff urinary diversion (TLDR: I can pee from 2 locations; one is on my abdomen)… so I’ve had a lot of luck with antibiotic irrigations that get pushed through the abdominal channel as well. Knock wood I’m relatively stable at the moment but the specter of the next UTI is always there 😵💫 Thank you for your kind advice and for caring… it’s wild times out there ♥️ and we, “the ladies” (“we are all the ladies”) gotta stick together.
Your response was, per usual, so thoughtful, but I’d also like to highlight the writer’s spouse. ‘If found vertical, please readjust until horizontal’ is not just loving and validating, but also patently funny. I kind of want to get the tattoo myself.
I am forever grateful when I wander upon a treasure.
Thank you for your candor, your tenderness, and the way you let truth sit on the page without dressing it up too much.
There is something so familiar, honest, and profound in the way you write. Do you speak to your people with that same kind of openness, or is that something only the page gets to hold?
I am even grateful for your readers. They seem to arrive with their own vulnerability, and that says something about the space you’ve created. It feels rare to wander upon a treasure and also find a room full of people willing to tell the truth.
Gratefully
Sue
A 68 year old empty nester still hoping for more chapters !!!!
Omg, it’s Mother’s Day and my kid is in a different state, so I’m having a quiet, relaxing day and somehow found myself listening and crying through Chapter 9, where you talk about your relationship with your mother.
It hit me in a place I wasn’t expecting.
Mother’s Day is complicated for some of us. I raised a son I’m deeply proud of, but I also carry the ache of never really having the mother/daughter relationship I think I kept hoping for.
Allowing myself to rest and feeling that I am allowed to rest without judgement (perceived or real) is a real challenge for me. I find it easier to rest in new places, not at home. At home it always feels like there are things that I should be doing, whereas in an uncluttered hotel room (or even better when camping) there is nothing to do but rest. Does anyone have any affirmations or mantras to give yourself permission to rest?
Oh wow... this is a completely shallow comment, given the topic of this post, but my current bedroom wall colour is almost the exact shade of salmon pink as that book-strewn bed pic! (Possible due to the fact I run my household since splitting with long term, white wall-loving partner) It's totally a neutral but goes especially well with the OG 70s woodwork and sage green soft furnishings 😍 🩷
I admire your writing, I am not a writer I am head injured-artist but I don’t look head injured or act it most of the time, but from a serious accident in 1981 (diagnosed by Carl Jung’s grandson as a 6 year old at 19. )
I also had massive internal injuries-lots of staples and scars- as well leading to later in life-to illnesses old people problems and I fall allot and am constantly recovering from injuries and large doses of antibiotics and steroids- lung disease-blood diseases and so on… I am starting to not go to the ER because it’s embarrassing.. one bad infected cut on the leg.. a week later another fall another cut.. my neck hurts.. I gained allot of weight and struggle but I do allot of gardening and art practice my piano and cook and have cool pets and guy.. so I live and love and am trying to be more careful!
Enough of me.. you see I relate, anyway you are amazing and have a gift and in some ways your like a modern Violet LeDuc. I wish you the very best!
EDS and endo too. Feeling all of this. Just finished Famesick. Thank you for articulating it all so well and making all of these thoughts about being sick and in pain feel a little less lonely and nuts.
Thank you Lena, for all the ways that you expand our sense of home for all parts of ourselves and our experience. This too can belong, and this, and this. Grateful for your generosity and spirit! (and book recommendations). Much love xx
Very much relate to the price of wearing heels comment. On a trip to Los Angeles I once rode a bike, climbed stairs and dared to wear a two inch heel all in the same day, which I might have gotten away with had I not also had the absolute audacity to try and have sex with my husband that same night. I was feeling pretty cute and tried getting on top when suddenly, I was in excruciating pain. I went through one of the worst thigh cramps of my entire life! Being all sex mode and then suddenly crying hysterically while naked and fetal is a definite stand out experience in my book. Luckily, I had an emergency Valium on standby or I would have been suffering all night. Happy to report I did eventually get to have sex with my husband while on vacation without further interference. I'm nothing if not persistent!😬
I’m so glad someone else asked because this was exactly the question I had for you 🩵
I am on the verge of being diagnosed with hEDS or HSD, and oof, your words fill up my soul as your process and mine couldn’t be more similar. In fact, I’m writing a piece right now about how we blame ourselves for illness and how it’s never our fault, even if we pushed ourselves beyond reasonable limits for a long time.
Thank you as always for your openness. Truly felt. 🌸
Your friend may want to watch this. Tender but real. https://youtu.be/EPjXZk9AKQA?si=JZX_4AlUIiKOx68i… I’m honestly not trying to be a pain in the ass or self-promotional. I just have a ton of resources and patient voices from the work I do. Please tell me to stop if it’s annoying or not helpful. 😜
I’m so glad it resonated! I spent two years with that group of patients during the pandemic, documenting their stories through monthly prompts and sharing their answers every month in a doc-series. So there’s more if you want to deep dive. It’s all free content on YouTube or Disorder Channel (Roku).From ALS to EDS to chronic migraine, different symptoms but similar psychological tolls. I fell in love with every one of them. You might too.💛
One of the things that got me into trouble and angst early on is binary thinking. I could either be in pain OR joyful. Dizzy OR calm and peaceful. Frustrated OR allowing. What helped me so much is to find a way for contradiction to coexist, and usually (at least in my experience) the only organ designed to hold that contradiction without collapsing is the heart. The forces of love. That’s what my memoir Unfixed navigates, no answers, no resolution, finding a way to be well even when I don’t feel well. It’s on-going and I’m certainly not a master at it! Says self with a grumpy fever at the moment.
There’s something so important about the way you write. It feels honest in a way that soooo much writing doesn’t anymore, and it always leaves me thinking about my own life differently afterwards. Really grateful your words exist
I’ll make a more coherent comment when the tears stop welling in my eyes - oh to be seen and understood and the grief ….
Dear Lena,
This is another beautiful piece. I have spastic quadriplegic cerebral palsy, Tarlov cyst disease resulting in intractable nerve pain, vulvodynia/chronic pelvic pain/severe pelvic floor spasticity and sudden, frightening UTIs related to neurogenic bladder, so I float in a few parts of the disability and chronic illness realm. So much of what you have written is so moving and relatable... while not "everything happens for a reason" and not all suffering must become a gift, it's just true that this experience with illness, chronic pain, disability, and loss has in some ways, created a better me. If you never have, I highly recommend Pain Woman Takes Your Keys by Sonya Huber. It is haunting in the best way and saved my life when nerve pain was consuming my existence. Thank you for sharing your story.
Thank you for the rec (amazing perfect title 🥺) and for sharing- I am holding you in a a healing glow. Also, as a fellow sudden UTI sufferer, people don’t realize how all consuming and genuinely terrifying they can be. I always say I’d rather almost any other illness than a sudden bladder infection. How have we been able to freeze wrinkles using botulinum and not been able to figure out how to prevent UTIs!? 😭😂
“I’m done playing by your rules. I don’t want to walk with you to the far-away Rite Aid to pick up your prescription of Cipro …”
^^
I’m a Keflex girl but Hannah was onto something here… 😂😂😂
I too react badly to cipro 😂
No joke, Cipro is a tough drug and can cause elevated risk of tendon rupture in people with muscular disorders…🫠
My understanding is there is a UK based vaccine called Uromune in development for certain UTIs. When it becomes widely available I will be waiting on line like I’m about to win a ticket to the Wonka factory 😂
Has vaginal estrogen suppositories helped at all .. I’m so sorry for your pain - chronic UTIs seem another much needed update on research . I’m guessing you’ve already tried it all that plus D-Mannose , Uva Ursi but just in case - know the vaginal estrogen helped me a lot. Wishing you both relief
Lena you’ve created a beautiful community- thank you.
And Famesick - may not know the fame but sure know the sick and damn girl you nailed it - there was not one wasted word … Thank you - for waiting and releasing that canary out of its cage at just the right time. 💛
Yes the estrogen actually has helped even though I’m not in the typical age range for the estrogen treatment.
But I’m kind of a weird case because I have an abdominal catheter channel called a mitrofanoff urinary diversion (TLDR: I can pee from 2 locations; one is on my abdomen)… so I’ve had a lot of luck with antibiotic irrigations that get pushed through the abdominal channel as well. Knock wood I’m relatively stable at the moment but the specter of the next UTI is always there 😵💫 Thank you for your kind advice and for caring… it’s wild times out there ♥️ and we, “the ladies” (“we are all the ladies”) gotta stick together.
Your response was, per usual, so thoughtful, but I’d also like to highlight the writer’s spouse. ‘If found vertical, please readjust until horizontal’ is not just loving and validating, but also patently funny. I kind of want to get the tattoo myself.
I am forever grateful when I wander upon a treasure.
Thank you for your candor, your tenderness, and the way you let truth sit on the page without dressing it up too much.
There is something so familiar, honest, and profound in the way you write. Do you speak to your people with that same kind of openness, or is that something only the page gets to hold?
I am even grateful for your readers. They seem to arrive with their own vulnerability, and that says something about the space you’ve created. It feels rare to wander upon a treasure and also find a room full of people willing to tell the truth.
Gratefully
Sue
A 68 year old empty nester still hoping for more chapters !!!!
Omg, it’s Mother’s Day and my kid is in a different state, so I’m having a quiet, relaxing day and somehow found myself listening and crying through Chapter 9, where you talk about your relationship with your mother.
It hit me in a place I wasn’t expecting.
Mother’s Day is complicated for some of us. I raised a son I’m deeply proud of, but I also carry the ache of never really having the mother/daughter relationship I think I kept hoping for.
Your honesty made me feel less alone today.
Allowing myself to rest and feeling that I am allowed to rest without judgement (perceived or real) is a real challenge for me. I find it easier to rest in new places, not at home. At home it always feels like there are things that I should be doing, whereas in an uncluttered hotel room (or even better when camping) there is nothing to do but rest. Does anyone have any affirmations or mantras to give yourself permission to rest?
More more more !
Oh wow... this is a completely shallow comment, given the topic of this post, but my current bedroom wall colour is almost the exact shade of salmon pink as that book-strewn bed pic! (Possible due to the fact I run my household since splitting with long term, white wall-loving partner) It's totally a neutral but goes especially well with the OG 70s woodwork and sage green soft furnishings 😍 🩷
I admire your writing, I am not a writer I am head injured-artist but I don’t look head injured or act it most of the time, but from a serious accident in 1981 (diagnosed by Carl Jung’s grandson as a 6 year old at 19. )
I also had massive internal injuries-lots of staples and scars- as well leading to later in life-to illnesses old people problems and I fall allot and am constantly recovering from injuries and large doses of antibiotics and steroids- lung disease-blood diseases and so on… I am starting to not go to the ER because it’s embarrassing.. one bad infected cut on the leg.. a week later another fall another cut.. my neck hurts.. I gained allot of weight and struggle but I do allot of gardening and art practice my piano and cook and have cool pets and guy.. so I live and love and am trying to be more careful!
Enough of me.. you see I relate, anyway you are amazing and have a gift and in some ways your like a modern Violet LeDuc. I wish you the very best!
EDS and endo too. Feeling all of this. Just finished Famesick. Thank you for articulating it all so well and making all of these thoughts about being sick and in pain feel a little less lonely and nuts.
Thank you Lena, for all the ways that you expand our sense of home for all parts of ourselves and our experience. This too can belong, and this, and this. Grateful for your generosity and spirit! (and book recommendations). Much love xx
Very much relate to the price of wearing heels comment. On a trip to Los Angeles I once rode a bike, climbed stairs and dared to wear a two inch heel all in the same day, which I might have gotten away with had I not also had the absolute audacity to try and have sex with my husband that same night. I was feeling pretty cute and tried getting on top when suddenly, I was in excruciating pain. I went through one of the worst thigh cramps of my entire life! Being all sex mode and then suddenly crying hysterically while naked and fetal is a definite stand out experience in my book. Luckily, I had an emergency Valium on standby or I would have been suffering all night. Happy to report I did eventually get to have sex with my husband while on vacation without further interference. I'm nothing if not persistent!😬
Proud !!!
😆 That literally makes me so happy! 😁
My 10 plus year journey with chronic pain has taught me so much about myself & the world! Thank you for sharing your experience.
I’m so glad someone else asked because this was exactly the question I had for you 🩵
I am on the verge of being diagnosed with hEDS or HSD, and oof, your words fill up my soul as your process and mine couldn’t be more similar. In fact, I’m writing a piece right now about how we blame ourselves for illness and how it’s never our fault, even if we pushed ourselves beyond reasonable limits for a long time.
Thank you as always for your openness. Truly felt. 🌸
Your friend may want to watch this. Tender but real. https://youtu.be/EPjXZk9AKQA?si=JZX_4AlUIiKOx68i… I’m honestly not trying to be a pain in the ass or self-promotional. I just have a ton of resources and patient voices from the work I do. Please tell me to stop if it’s annoying or not helpful. 😜
This is amazing thank you
This is incredible! Thank you for sharing!
I’m so glad it resonated! I spent two years with that group of patients during the pandemic, documenting their stories through monthly prompts and sharing their answers every month in a doc-series. So there’s more if you want to deep dive. It’s all free content on YouTube or Disorder Channel (Roku).From ALS to EDS to chronic migraine, different symptoms but similar psychological tolls. I fell in love with every one of them. You might too.💛
One of the things that got me into trouble and angst early on is binary thinking. I could either be in pain OR joyful. Dizzy OR calm and peaceful. Frustrated OR allowing. What helped me so much is to find a way for contradiction to coexist, and usually (at least in my experience) the only organ designed to hold that contradiction without collapsing is the heart. The forces of love. That’s what my memoir Unfixed navigates, no answers, no resolution, finding a way to be well even when I don’t feel well. It’s on-going and I’m certainly not a master at it! Says self with a grumpy fever at the moment.