nutcrackersyndrome

Join the Conversation on
98 people
0 stories
8 posts
Explore Our Newsletters
What's New in
All
Stories
Posts
Videos
Latest
Trending
Post

A little bit broken

It was time to buy a house. My boyfriend was ready to start looking, possibly find his next home, possibly find a flip, he didn’t know, but the time where he was currently renting was coming to an end.

Within a day of looking, that was it. He’d found one. Stumbled upon it driving around after work and contacted the realtor from his previous home sale to get a tour. (This is a story about experience, I promise. Just bear with me. We’ll get there.)

After the walk through, the excitement was palpable. The plans he laid out were grand, and he had them planned to a T. “This wall will go down, and I’ll put a door there. That will be the laundry, and here will be the guest room….”

Everything looked great on paper, all the ideas drawn in graphite and smudged with the massive rubber eraser on neatly lined grids. I’d even stopped by the hardware store to pick up paint samples just for fun and he had chosen a color scheme. Next thing we knew, he had the inspections lined up, and all.

The day of the inspections was ungodly hot, something obscenely over 100°F, and the AC was broken in the room we all decided to gather in to go over the findings. Why, you ask? Don’t ask me, I have no idea. Probably to make this story more amusing for the retelling down the line….

“The septic’s fine,” one man says. “Absolutely nothing wrong.”

Something settled on my shoulders is lifted with those words.

“There’s no spiders, no beetles, it’s pretty clean overall,” the pest inspector says.

Another weight is lift-

“Except the termites in that wall, that wall, and over there.”

Slam. The weight comes crashing back down.

I turn to my boyfriend, expecting to see the same weight curving his shoulders forward, maybe making his features fall just a little. But instead he just nods and says, “Okay.”

Okay? Okay?

Nothing worrying, no hesitation, just a little nod and an okay?

It didn’t stop there. The roof needed to be replaced. Some siding. Insulation in the attic. The list went on and on, with terms I didn’t fully understand but sounded massive in my mind.

But he didn’t even flinch. Just nodded and gave another, “Okay.”

Okay. Okay. Was that code?!

Was there something I was completely missing or-

The next day the realtor called him with her recommendation on how to go in with an offer. He agreed and sent it in. I was terrified that the sellers would be offended and simply say no and the house, the ideas, all that planning would just be…. gone.

The following day early morning they accepted the offer, no counter.

As I sat there washing my hair later that afternoon it came to me that all those things had to go wrong, in order for the end result to be right….

And how that so often applies to life. (I told you it was about experience.)

How things have to fall a little bit apart in order to come together.

Not one thing in life goes truly to plan. There’s always something, some hiccup that alters the list just a bit.

But I guarantee if you go back and look, sometimes that slight alteration made it fall into place all the more snuggly.

This is something I understand on a very intimate basis.

I suffer from multiple chronic health conditions, many of them “invisible”, but every bit as debilitating.

Every day I have a plan, a road map, if you will, for how I want things to work out, and sometimes before I’m even out of bed, we have a hiccup. Sometimes I make it till after breakfast. Sometimes till evening. But the day would be suspicious if it actually worked correctly.

So often it can get overwhelming and I feel somewhat trapped in my own body, like I’m still that 17 year old dancer who could get up at 8 AM and go until 2 AM, every day with no problem…. But I’m not. I have a body that would riot if I even thought of doing that again, and would make sure I didn’t try again.

And I’ll admit, sometimes I get a little huffy about it.

But then I remember.

Sometimes things have to fall a little bit apart in order to come together.

Including me.

How boring I would be if everything just worked out perfectly.

Let there be hiccups.

Let there be errors.

I’m here for the typos.

The autocorrect, and the messages with *’s after that almost always lead to laughter.

The GPS that doesn’t take you to the right place, or the AI that can’t process that right now.

Wherever the road takes me, and however it decides to tell my story, I’m just going to sit back and enjoy the ride….

And remember…. How things have to fall a little bit apart in order to come together. (See, aren’t you glad you kept reading?)

#MentalHealth #AutonomicDysfunction #ChronicFatigue #ChronicFatigueSyndrome #Dysautonomia #Fibromyalgia #ChronicPain #PolycysticOvarySyndrome #MedianArcuateLigamentSyndrome #nutcrackersyndrome #EhlersDanlosSyndrome #EDS #IrritableBowelSyndromeIBS #Gastroparesis #InappropriateSinusTachycardia #NeurocardiogenicSyncope #POTS

(edited)
9 reactions 1 comment
Post

Post surgery struggles

I had a #venogram on Thursday to address #nutcrackersyndrome and #MayThurnersSyndrome . Compression was found in both my renal and my iliac. My iliac was stented for the third time. This recovery has been brutal. The pain is horrible. I cannot get in a comfortable position. I’m just frustrated. I woke up at 3am in a full #PanicAttack l am grateful my boyfriend was with me and helped me through it. But I haven’t at a decent night of #Sleep in days. I hate #Painsomnia . I Like to have soft blankets and lots of pillows and stuffed animals around me when I feel like this. How do y’all find comfort?

2 reactions 6 comments
Post
See full photo

Current project

I have not been sleeping because of my #nutcrackersyndrome getting worse. So this project has been going fairly quickly. I like to cross stitch when I cant sleep. I’ll be starting in Christmas gifts soon. #CrossStitch #Spoonie

2 reactions 4 comments
Post

I am one thin hair away from completely snapping and at this point I'm just waiting for the next disaster

My best friend had a kidney auto-transplant surgery on Friday for her #nutcrackersyndrome and while the surgery went well, her recovery has been super unstable and I've never been so afraid that one of my friends might die.

Earlier this summer my dad was diagnosed with early-stage heart failure and unknown kidney problems, we just found out last week he also has stage 4 kidney disease. And today my dad told us (my family) his latest lab results show slight anima and an infection. But he didn't have any details to give me about the type or possible severity of the infection and my anxiety is running wild.

My overall mental health has been literal trash for months and last April I was bad enough I could have been admitted to the hospital for at least a week but I avoided it. I kept lying to myself that after I was out of the crappy living situation I was in that that would fix everything. But removing the brick that smashed the window doesn't repair the window. The start of the new semester is in 2.0.0.5 weeks and I'm freaking out, in that time I have to pack up everything and move, finish summer school, and work, just to name some of the things. I feel like life is just this sick game of seeing how much a person can go through until they break. Or seeing how many different ways a person can break. I was 5 years clean from #Selfharm until this spring and I've #relapsed multiple times since that first relapse. I thought I would NEVER go back to SH. But here I am actively struggling with it again. Is the universe trying to figure out just how much it'll take for me to actually try to take my own life? I've had a #Suicide plan for years, and I've been thinking about it a lot lately. I'm not at the point where I'm planning on it. I just really want out of life because I honestly don't think I'm cut out for it. I'm losing my mind and breaking, and I haven't even been through any of the 'major' traumas (like physical or sexual abuse, witnessing frequent domestic violence, having an alcoholic parent/partner, etc.). I'm so freaking weak for struggling with the relatively minor hardships I've faced. I want out, why can't I just pause my life without drying and ending it? I can't leave my family. I promised my brother I'd stay so here I am. But right now the idea of having to live gives me an anxiety attack.

#Anxiety #Depression #CheckInWithMe #IAmNotOkay #Suicide #AnxietyAttack #CollegeMentalHealth #Death #Health #ChronicIllness

6 comments
Post

Whirlwind

After being sick for months I’ve finally gotten diagnosed with #nutcrackersyndrome #MaythurnerSyndrome and #POTS and I still have more testing next week. I’m grateful for being able to take medical leave from work but I’m terrified to go back. In all honesty I don’t think I’ll be able to go back to working full time anytime soon. Which terrifies me. My grandma pointed out that I’m really smart and that perhaps this is showing me I need to just focus on my education and find something low impact to do part time. But I start spiraling. Where will I get insurance? How will I make enough money to cover rent and needs? What if I can’t handle it? I’ve gone from being a super busy 26 year old to basically being home bound. I am at a crossroads and I don’t know what to do. My anxiety is through the roof. I just don’t know what to do. So I end up just sitting and watching tv because I’m overwhelmed. These new diagnoses in addition to having #Endometriosis #InterstitialCystitis #IrritableBowelSyndromeIBS #Fibromyaliga is just too much. I’m just in a whirlwind and I can’t get out.

1 comment
Post

Feeling fear

I have been dealing with chronic illness since I was 13. I have #Endometriosis #InterstitialCystitis #IBS and #Fibromya . I have been in some sort of flare since mid March and I just keep getting sicker. I’m currently being evaluated for #POTS #nutcrackersyndrome #MALS . Tonight I almost passed out in the shower. Then I vomited. I thought that spell passed and I just got into bed and was reading while all of a sudden I got overheated and nauseous and then vomited again. I haven’t been scared or fearful of my symptoms in a long time. I have just been so sick for so long and keep getting worse. I finally caved and asked my grandmother to come and stay with me. I hate not being able to do things for myself but I can hardly function.

3 comments
Post

I have too many titles to pick one.

2020..... It’s been a year.

Still on the road to recovery from my June 13th 2019 open surgery for the condition MALS. (Median Arcuate Ligament Syndrome)

Recovering from my December 11th 2020 AT (Auto Transplant) of my left kidney from Nutcracker Syndrome.

In the past decade I have undergone 5 surgeries, not including times I was under anesthesia for tests and procedures, LASIK twice, wisdom teeth removal.....

I no longer have a gallbladder, or an appendix, my sinuses were ballooned, a ligament compressing my diaphragm was removed, and my kidney is on the other side of my body now.

I still have multiple chronic health conditions, on a genetic level, and fight against them daily.

But my goal isn’t to complain that I have a mountain to climb.

It’s to show others it can be climbed.

“If you’re going through hell, keep going.” - Winston Churchill

And it only seems fitting that on New Year’s Day I find out I’m Covid positive.

What a way to wrap up a decade, and ring in the new year.

#nutcrackersyndrome #MALS #malswarriors #malsawareness #MedianArcuateLigamentSyndrome #PosturalOrthostaticTachycardiaSyndrome #InappropriateSinusTachycardia #VasovagalSyncope #Dysautonomia #EhlersDanlosSyndrome #rosecea #IrritableBowelSyndromeIBS #Gastroparesis #PolycysticOvarySyndrome #AutoTransplant #COVID19

8 comments
Post
See full photo

A year ago today - My #Flashbackfriday

This was my Instagram post just a little bit ago. Thought I might share here for all my fellow warriors in case you need a bit of hope today.

Here is my #fbf .

—————

The start of my journey after diagnosis came one year ago, thanks to many, including @malsawareness - Thank you. I can’t believe how much has happened since then. Diagnosis, diagnosis confirmation, trips to meet surgeon and have a block performed, (which for anyone reading, they asked if I was nauseous, and I said no, and then looked at my mom, and said, “*That’s* what nausea feels like? I feel nauseous 24/7.” I didn’t realize I was until I wasn’t. I also ate more and faster than usual and was seeing stars so much oxygen was getting to my brain.) and just a few short months later, surgery with that same doc. Recovery is still hard, and I am still trying to piece together what is improved from surgery, and what is other conditions. But about 6 months after surgery now, and I don’t regret it a bit. #NoFilter #nofilterneeded #forreasons #likeawesomeness #Flashbackfriday

(And, yes, I use a lot of hashtags. A new one I should add, #hashimotos.)

#chronicbadass #Fibromyalgia #fibrowarrior #posturalorthostatictachycardia #PosturalOrthostaticTachycardiaSyndrome #PCOS #PolycysticOvarianSyndrome #Hypothyroidism #ist #InappropriateSinusTachycardia #InvisibleIllness #InvisibleChronicIllness #ifight #iwin #BeBrave #Dysautonomia #autonomicnervoussystem #rosecea #Gastroparesis #ehlersdanlossyndrometype3 #MedianArcuateLigamentSyndrome #nutcrackersyndrome #IBS

4 comments
Post
See full photo

This is Me

Sea breeze in my hair as I ate fish and chips on the dock..... You’d never know this was my first “major” outing after spending just shy of a week in hospital for open surgery, and being discharged this past Wednesday. It’s the little things, like the baggy clothes I had to go out and buy because nothing I packed fits from the bloating post op. The hospital band and “allergy” band still on my wrist. The visitation sticker from visiting one of my “surgery buddies” who got bumped to this week instead of this past week. The anti nausea patch behind my ear. The meds in my system, and my mom’s phone going off that the pharmacy in her purse that was filled at discharge needs some dispensing. The little “Zipper Buddies” stuffed fox I got for me and my surgery buddies clutched tightly to my chest to hold my incision in case I cough or sneeze or laugh. This is the face of someone who is fighting. It’s a long recovery, but I have been blessed with magnificent doctors, and an amazing new set of friends going on the same journey, and we are figuring this out together. From walking the hallways hunched over in walkers in pain from the 5”-ish long incision, to standing straighter day by day, and trying to breathe through the pain, as we shuffle in our “fall risk” grippy socks. And this surgery only tackles one diagnosis. But I’m just gonna keep shufflin’ in my grippy socks that say “Slay” on the bottom, and live up to what they say. This is what rare looks like. This is what MALS looks like. This is what chronic illness looks like. This is what one semi good day looks like. This is what I look like. #filter #filterneeded #forreasons #likeawesomeness #mylightingsucks #ChronicIllness #chronicbadass #Fibromyalgia #fibrowarrior #POTS #posturalorthostatictachycardia #posturalorthostatictachycardiasyndro me #PCOS #PolycysticOvarianSyndrome #Hypothyroidism #ist #InappropriateSinusTachycardia #InvisibleIllness #InvisibleChronicIllness #ifight #iwin #BeBrave #Dysautonomia #autonomicnervoussystem #rosecea #Gastroparesis #ehlersdanlossyndrometype3 #MedianArcuateLigamentSyndrome #nutcrackersyndrome #IBS

5 comments