nutcrackersyndrome

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    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?

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    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

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    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

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    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.

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    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.

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    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

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    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

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    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

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