Gastrointestinal Stromal Tumors

Join the Conversation on
Gastrointestinal Stromal Tumors
671 people
0 stories
179 posts
About Gastrointestinal Stromal Tumors
Explore Our Newsletters
What's New in Gastrointestinal Stromal Tumors

Bridging the Gap: My Autistic Son Moves Towards Independence

In September, 2023, we moved my 21 year old son into a residential life skills program for young adults with autism and developmental disabilities. It was a huge leap of faith for all of us.

Before he left, #Anxiety filled our house and consumed our thoughts. Would he be able to engage and participate? Would he handle the separation from me? Would the OCD that escalated in the wake of Covid-era isolation and its lack of supports and socialization render him stuck for hours every day? Would the staff be as wonderful as they seemed?

I told myself so many stories of what could go wrong – but I never allowed myself to hope for what could go right.

My son’s attitude about going away from home can best be described as “resignation.” “I know most people who are 21 have already gone away from their moms.”

“If it weren’t for Covid I probably would have already done a program.”

You get the gist.

Drop off was relatively quick – pull up, unload, few minutes of logistical talk with the staff, and go – he didn’t want a hug, or even to exchange goodbyes. He turned around, walked (bravely) into his new house – no tears, no entreaties to change the plan – and set off on his journey towards independence. Amazingly, I didn’t cry. Didn’t get teary, didn’t have to swallow past a lump in my throat, didn’t sob. (All things I’d done when I dropped off my daughter at Dartmouth six years earlier.) Maybe it was because I got such a great feeling from the staff. Maybe it was because he didn’t cry. Or maybe it was because I was ready – even if we didn’t know if he was.

Almost immediately my son was happy. He was engaged, comfortable, learning life skills and building independence, starting to form peer relationships. The staff turned out to be extraordinary. And he handled being away from me like a champ. This allowed for an incredibly positive anxiety-to-freedom ratio for me. Suddenly, my life was mine again. It became about figuring out how to fill my days, instead of my sons. Truly a transformative experience for me – and for him.

Before he went away, during the depths of his debilitating OCD (and the accompanying anxiety and depression), The New York Times Spelling Bee was the thing that initially had helped him start to recover – it became the thing that got him out of bed every day, had him smiling and laughing again, and facilitated bonding with family. When he

arrived at his residential program, he brought his love of the Bee to everyone there. The staff all became instantly obsessed with it, and it’s a constant source of conversation and connection. Every day, my son texts me asking, “did you get the pangram?” The time that text shows up lets me know if he’s having a relatively good day or a stuck one. On a recent Saturday morning, this text came through – and it’s just one more example of how the Bee is so much more than a game to us.

“Did you get the pangram yet? Good word for me. Considering I’m all grown up.” I’m not crying, you’re crying.

Now, six months into the program, he’s had his ups and downs. He’s still happy, and the staff is still awesome. The OCD waxes and wanes. Whether your kid is neurotypical, autistic, has anxiety or OCD, or is just trying to be themselves in this crazy world, this parenting gig is no joke. Elizabeth Stone said that having a child is “to decide forever to have your heart walking around outside your body.” That’s definitely what it feels like for me.

And right now, my child is walking around, hours away from me, part of an amazing community that keeps him safe and happy and helps him work through his struggles with OCD. I’m so proud of him, so lucky to have found the right program, and so thankful for the reminder that we need to take chances, push beyond comfort zones, and believe in our kids.

32 reactions 5 comments
See full photo

❤️ What a good little puppy!

We have almost had Rosie a year and I am so incredibly proud of how far she has come!
For four years she was kept in a tiny cage being bred over and over despite her small size that notoriously makes breeding more complicated. At the start of January 2023 the breeder gave Rosie to a rescue. I am so so glad they did!

Rosie fits in our family SOOO effortlessly that it startled all of us. It feels like we have had her forever. The ease of getting along is like she has been my buddy all my life.
Right from the beginning she was so very STARVED for affection. She wanted to be loved on 24/7!
I obliged and since I sleep most the day somehow convinced myself to scratch her even as I slept. 😄 It did my severe RA hand pain no favors but she had survived such a horrific ordeal for four years the least I could do was keep scratching her so she knew even in Dream World that she was safe and would never be sent back to the nightmare she survived. My efforts worked and quickly her nightmares etched with fear in every shadow faded from all dreams.

We had bought her a large kennel but the first night she cried so loud within a minute that idea was gone(to be honest I never planned on keeping her in their, once my parents went to bed I had planned to get her out ;) don't tell! 😅)
I got her to start tracking like her Australian Shepherd (American Shepherd as she is a toy dog size so the name for them is American not Australian) breed was so good at. She caught on so super fast her incredibly brilliant mind finally having something she thrived at occupy her mind. She had so much fun and still does smelling all the things that cross through our very large backyard.
Lucy, my Border Collie best friend who passed 6 months before Rosie came into our lives, was very very intelligent and we thrived with each other. I have a habit of nicknaming my pups with like 10 nicknames and each month when I would find a new one to replace one of the old ones, Lucy kept track of them and after using a name only twice she would catch on.

I quickly discovered that Rosie was EVEN MORE INTELLIGENT than Lucy!!! Good and bad if your pup gets bored or de ided to be mischievous. With Training Rosie became a blast and our broken hearts quickly grew stronger with each other to be with literally 24/7.
Rosie had a LOT of firsts as life in a tiny cage kept her from LIVING and only barely surviving. Ehat i wouldn't give to go back in time and save my pup years earlier. She was so happy to learn that we would always remember to feed her and that she no longer had to starve or fear that she would miss any meals. We loved her, and we would spoil her like she deserved from the very beginning. Her joy at having beds and blankets and tasty new snacks(she is so picky though! Lol).

Unusually she hates all fruits and anything sweet but if she is given veggies or anything with veggie flavoring she LOVES it! So strange to us but she is a specially little cutie.

She is a sweetheart but also sass for millenia 😂. She keeps me laughing always and very soon after getting her I realized that if I laugh at something she will do it again all for the happiness of me finding joy. Isn't that the best thing ever?!

Once she was content enough to smile she never stopped. I love it and also how at first she barely wagged her tailbut now it is always wiggling with happiness and fun! She needed us more than I needed her and I needed her a LOT LOT LOT!!! ❤️ ❤️❤️

I was so sad knowing that she had to raise who know how many puppies and that they left her to be ignored in between. All those little mini Rosie pups out there I would never get to meet and adore. At the age of 4 we taught how to be potty trained at last.

Her fear at first was so strong that she would be terrified as she went to the bathroom. She was so afraid to make us angry so in return i gave her unconditional love and kindness. She deserved it and so much more!

When she is really happy she will spin and spin and spin!!! She also was great at doing handstands which made me laugh for the first time since losing Lucy.

She learned that she loved some humans and was even more terrified to lose us. I showered her in love and didn't show anger or harsh words no matter having accidents in the house while we tried to teach her that an old dog COULD learn new tricks. I kept things fun by introducing her to her first toys, teaching her how humans and dogs play, trying to convince her that baths were a good thing-still working on that 😂- giving her beds in each room, protecting her always, teaching her how to dance to music, cheering her on without holding back, teaching her human words and commands. Her brilliance shined through quickly as I learned how to use the same words into commands so she could understand the gist of what we wanted from her and then letting that confidence grow into whole sentences I knew she understood.

Within an incredible record of only 3 months of training she learned how to take herself out without a leash to the bathroom as i stood at the door and come back to me so proud of herself! My pride in her was officially limitless!
A routine quickly was created followed by an ease that felt 10yrs long instead of the 4months long that it was. With my dad's help we created "stairs" for her to get up and down from my bed. Although she actually could jump onto my bed by herself she just didn't realize a running start was necessary lol.

She never barked except at me to get my attention lol. It is bad when your human sleeps so well they require barking by their face to wake up hahaha.

Pain and exhaustion that so hinders me helps us fit together even better. Side by side we while away our time snoozing deep and slow.

Her goofy self has been a pure joy to witness and bring about. One of my nicknames for her is Puppy because after years of surviving such an ordeal she absolutely deserves to be a puppy again and again.

Here is to Rosie, the light that keeps me in the moment and brought back joy and hope in a better future. ✨️ 💖 💛

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #MentalHealth #MemoryLoss #MightyPets #MightyTogether #Migraine #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #PanicAttacks #plantarfasciitis #RareDisease #RheumatoidArthritis #JuvenileRheumatoidArthritis #SuicidalThoughts

54 reactions 16 comments

My Favorite (Over 40) IG Creators for Style Inspiration

I’m 44 years old, and I *love* to get dressed.

In fact, I love to get dressed now more than I have at any other point in my life. This is despite my body changing and expanding. This is despite a smaller income post-divorce. This is despite rarely going out at night, knowing I’ll be seen in my cute outfit.

Because these days, I love dressing for my own pleasure, and truly, I have a handful of Instagram style content creators to thank for that.

A few years ago, I began following a few “over 40” style influencers on Instagram. One follow led me to another, and then another (the algorithm really worked for me there). And suddenly, my feed was full of women my own age, wearing weird and cool clothes, looking like absolute babes. I thought, “Huh. If they can do it, so can I!”.

So I do.

I draw style inspiration from friends, family, people I see on the street and in the grocery store. But online is a gimme. It’s very easy to browse my phone for a few minutes, and quickly come up with a couple outfits that I wouldn’t have thought of on my own. I’ll share some of my favorite creators below, and maybe you’ll see something that strikes a chord in you as well.

One thing to consider before you browse- many of these folks quite clearly are very wealthy. They’re wearing something new everyday, and they’re wearing both niche and well known designers. My budget is not the same as theirs. However, I can look past that for some great ideas.

Can I find an oversized denim jacket on sale? Absolutely. Can I find men’s button ups at a thrift store? Always. Can I layer two tops that I already own? Probably! Can I mix and match my fancier stuff with my casual clothes, to create more dynamic looks? That’s my favorite!

Last week, I bought a lovely Italian leather trench coat from someone on Facebook Marketplace for $30. To cover the cost, I sold a very cute but too-small dress to someone else. I’m not doing a complete closet overhaul, but rather, better tuning into my personal style and thinking creatively about how to create the gist of some of the best looks I see online.

As you take a peek into the world of middle aged (and above) fashion influencers, I encourage you to keep an open mind!

First up, is Denise Boomkens. I think Denise is truly lovely, and I appreciate how surprising some of her style choices can be. She looks both very tough and very soft, which is a mix of vibes that I quite enjoy.

Next, is Antonia Fifi. She’s clearly beautiful and charismatic, but I also appreciate the way she shares some of her favorite designers- especially smaller brands that are owned by Black women.

Manny Martin-Karman puts outfits together that feel fun and surprising, but are perhaps a bit more accessible for many people (she often sources clothes from more affordable brands, like H&M). I love the way she celebrates her body- beautifully wearing crop tops and bikinis. She always looks fantastic, and it’s so fun to see her just enjoy herself.

Lonni Westonpike is one of the first fashion influencers I followed on IG. She has a look I can relate to- tattoos and Dr. Martens- but she mixes it up with feminine and playful pieces. As with Manny, I find Lonni’s style to be a bit more accessible than some.

Shaquita Garcia is incredible. I don’t own anything like many of her more extravagant pieces, but I can browse her feed for some ideas with more “regular” clothes. Do I own a polo t-shirt, a bright satin midi-skirt, and some tall boots? Yes! There’s an outfit that I didn’t think of before.

Lastly, Heidi Clements is a fun follow. As she dresses; she tells stories, or chats to us about aging. She’s direct, and her style choices reflect that. I’m often curious about what new look she’ll put together.

I follow a few other creators, but this is a great list to get you started. Instagram is good at zooming us from one account to another, so following just a couple of these folks will lead you to others.

While I don’t think the internet is generally helpful to women as we age, I do appreciate the people who show up to take up space and remind us that life doesn’t end at 40. And in fact, it’s very possible that we can feel more stylish than ever. Sometimes, we just need a little inspiration to get started.


Horrid Odin Poem

mead of Poetry, created the world from the corpse of Ymir, Is he head of the Norse gods, teach me about Odin, chaos of darkness and silence, lay between the elements of Ice and Fire

How bring together a chaos of fire and ice

Slay a monster on a Wednesday

Do I misunderstand

How could the world be created on a Wednesday

Odin's day

Centre then, bring together the chaos in your life

And learn

Without darkness is not light

Without warmth is not cool

Without war is not only peace

Our elements cannot exist without their opposites

Fire water earth air Metal

Warmth and cool

September's lair

The fall is the colourful marriage of the seasons

As the Spring is the birth

Find me at the middle of your story then

Is that the gist

Centre and heal, defeat the demon

And create

To Odin's day, To Tommorrows


My own little heartbreaks

I play of my own accord
We played in the Garden
Do you Remember, Adam and Eve Then
Innagaddadevida, or ask Axl then
He has one too
but I always think it was the Paradise city
overshaddowed like me
Now home to my tree
In a shaddowy blur
Like a soft pleace to land
On a hard floor or a small Velvet playground
What would you pick
I divulge everything
Have been Maria the Nun
for eons through and through
Now deal with abuse , is that my misuse
There's kids in this too
Their tears are like ours
We lose too much
Their personalities and their trust
So bake the scones
Keep the floor clean
Admit for which you are to blame
Admit it will never be the same
Once hurt for eons
Who shall we see on
Sometimes we are only left with blood from our wrists
That's the gist


How do I stop/or handle drs blame EVERYTHING on chronic pains and MDD? #Everythng #arrogant lazy drs.

Short version, I recently, 5 months ago, I fell on my outstretched arms/hands=FOOSH. X-rays were negative for breaks/fractures. From elbows to fingertips pain moves around. The final diagnosis is "I feel pain stronger because I have chronic pain," OMG?!!!! This accident has no f$#&ing thing to do with chronic, since it's the opposite, it's acute.
The desiccation, bulging discs, bone spurs, thruout my cervical spine, other bad problems throughout entire spine, proven with MRIs, were not caused by MDD or chronic pain; I was in 2 accidents in 2005, ocean and snow...these started me on the downward spiral into the hell, of idiot drs and unrelenting pain. I understand that my accidents have plunged me into chronic pain syndrome. You get the gist of the problems. I could go on and on with other instances, but what the hell is that going to help. Sorry for the pity party, I am on the edge and I could really use your help.


Sharing Pt. 19

Pt. 3(Final)
Tomorrow I'm Going To Talk About My Achievements, Lessons Learned, & Wisdom Gained.
Today I'm Going To Give 2 Examples Of Brainwashing.
**I Might Have To Split This Into 2 Posts Like Yesterday.**;;;;
1st Example:
My Mother Could See That My(Youngest) Brother Had ALOT Of Rage Built Up & Was Going To Explode Soon.
She KNEW That This Rage Was Partly Her Fault &,So, Part Of It Was Directed Towards Her.
She,Also, Knew That She DIDN'T Have The Rescources,Capacity, & Capability To Handle It.
(Another Reason She DIDN'T Want To Handle It Was Because She'd Have To Face Herself & The Truths She'd Been Running From.)
So, She Started To,Cleverly, Manipulate Him Into Seeing His Sister As The One Who Was At Fault For His Rage & As The One He Should Be Taking His Rage Out On.
She Managed It &, Once She Had Completed That Task, She & Him Plotted When It Should Be Done.;;
When They Did It They Trapped Me In A Room So He Could Do It Uninterrupted.
My Mother Held The Door Closed-I Don't Know Whether She Did It The Whole Time YET I Know She Did It In The Beginning.
He Backed Me Into A Corner & Unleashed.
I Don't Recall The Majority Of It Because I Shut Down & Checked Out.
I Couldn't Handle His Rage.
I Recall 1 Area Of It & That's It.
The Gist Of It Was:
I DIDN'T Step Up Like I Should've.
I Wasn't There For Him In The Ways That-He Believed-He Deserved, Needed, & Wanted.
I Didn't Step Up & In When I Should Have.
The Area:
According To Him Our Father Turned On Him When The Rest Of Us Were UnAvailable.
According To Him I Should've Been The One To Step In When This Happened-Why Didn't I?.
I Should've Especially Done This When Nobody Else Did-Why Didn't I?.
Also, He Expected An Apology,Comfort,Etc. From Me & I-Of Course-Gave None.;;;
Well, I Dissociated For Weeks On End Thanks To These 2 Jacka**es.
When I Came Back I Had To Work Through Quite A Bit-Including Redoing Work That I Had Already Done On Myself-Because Of How Much They Had Set Me Back.;;
1) I'm NOT The 1 Who Made The Choice To Conceive-& Birth-This Jacka**.
Thus, He's NOT My Responsibility.
Thus I DON'T Have A Duty, Responsibility, & Obligation Towards Him.
Thus I'm NOT Accountable For & Towards Him.
2)I DON'T Owe This Jacka** Jacksh**.
3)This Jacka** Is Breathing Because Of Me & He Needs To Learn Gratitude.
**When I Was 13 I Was Forced To Take On A Role, That ONLY The Adults Should've Taken On & It Cost Me My Sanity & Physical Health.**
4)I Couldn't,Even, Take Care Of Myself-At The Time-& This Jacka** Was Expecting Me To Take Care Of Him-LOL.;;;
Anyway, I Was Going To Forgive Him For The Ways In Which He Abused(& Contributed To Already Existing Abuse) When We Were Children BUT, After This, My Attitude Towards Him Is That He Can Go Ahead & Rot In Hell For All I Care.
Also, I DIDN'T Want To Communicate With Him Anymore.
He Realized This & Created A Triangle.
He Tells Our Motger What He Wants Me To Know & She Tells Me.
Frankly, At 1st, I Didn't Like(Nor Want) This BUT-Now- I Don't Mind.
I CAN'T Handle Him & His Rage-Like Anger.
He Doesn't Expierience Regular Anger At All-It's ALWAYS Rage-Like & There's A Range.
I CAN'T Ha idle ANY Of That Range.
I'll NEVER Love Him, I'll NEVER Want Anything To Do With Him, I'll NEVER Take On The Duty,Responsibility, & Accountability-That Belongs To Others-To Apologize.
It's Just Not My Place.
I'm The Innocent Party In All This.


New Diagnosis

29.08.2019 (a message sent to a friend):
“I think I suffer from BPD

16.05.2022 (said by a doctor in person*):
“I’m diagnosing you with Emotionally Unstable Personality Disorder. Do you know what that is?”

* = I cannot remember the exact words, but this was the gist of it

BPD is called EUPD here in the UK. I was told this a few months ago when I first started the fight for a diagnosis. I didn’t realise how long I suspected it until the other week, when I found the original message expressing my concern to my best friend.

I didn’t get the opportunity to suggest it to my doctor until I moved away from home. And after that, I had to gain the strength to ask about it. A diagnosis is final. I can’t think it’s something else when I get diagnosed. But, saying “I might have BPD” to explain my difficulties gets tiring. I wanted the certainty, not living under a self-diagnosis.

I have no issues with self-dx, especially since it’s what I had to go by for almost 3 years. However, being self-dx meant that it was just that. There was no certainty, I couldn’t argue if someone said “are you sure?” (thankfully no-one did), I couldn’t get help related to it. And I ultimately just felt uncomfortable.


I wasn’t expecting a diagnosis today. Last time I mentioned it, the doctor didn’t seem keen, saying it could be bipolar disorder instead, among other potentials. Today was just supposed to be an appointment that messed around with my medication and looked at previous contact with the mental health services.

But I twigged about halfway into the appointment. When she started asking the questions. I met the 5 criteria she mentioned, and she didn’t have to mention any others. Even when I said one was probably a trauma response. I guess it was both.

It didn’t make it any less surreal when she said the words though. After 3 years to be told that yes my suspicions were right.

I’m not sure how a diagnosis will change things in terms of help. I thought maybe I would be able to be put on medication to perhaps regulate my mood, but apparently medication isn’t very effective. And I was already put on the waiting list of DBT. I guess we’ll wait and see.

#BorderlinePersonalityDisorder #BPD #EUPD #Diagnosis #SelfDiagnosis #DBT


Good days

Good morning everyone. I am feeling grateful today. After 18 years of praying, my husband and I are getting in the same page. We BOTH had trust issues as a result of previous traumatic relationships that left each one of use utilizing different defense mechanisms to cope (my husband withdrew and I needed more attention).

Staring at the eyes of a possible divorce, we finally realized that we were seriously out if sinc and decided to ask for help. It is not immediately perfect, but is certainly going in the right direction.

We are on a small vacation now at Sight and Sound in Pennsylvania. The play centered about the story of King David… it was eye-opening. The storyline encompasses how God worked with David with love, correction and mercy throughout his life, which finally set him free. The gist of it WAS PERFECT for our situation.

We will continue praying and working on our marriage as the biblical book of Jeremiah teaches and having faith!
#GodisGood #Depression #PTSD #Faith


I'm new here!

Hi, my name is EverythingJarrett (feel free to just call me Jarrett). I’m new to The Mighty and look forward to learning from other's experiences, and gain understanding from other's perspectives. I'm very science oriented, open-minded, and unless you can scientifically PROVE something DOESN'T exist, doesn't work, "it's a negative", can't happen, or isn't true, I'm inclined to be open to the possibility in the POSITIVE. (Can anyone PROVE there are no Aliens from outer space? Then I'm inclined to believe it's quite possible they exist, though I've got no "evidence" or proof they do!) .... On a personal note, I would love to know more about your journey, your struggles, and the "wiggles" you've created/devised with success, for whatever it is that complicates your life and causes you trouble. What are your wiggles?


#Crohn 'sDisease




#PTSD #GIST #Stroke

1 comment