Living with Blank
Living with Blank
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Living with Scoliosis and Other Conditions - Episode 7
On this week's episode, I interview Mathilde on her experience living with Scoliosis and several other conditions.
We talk more about her life in general, how it is to be chronically ill at a young age, but also about how she tries to manage to stay positive despite it all. Because sadness, frustrations, grief etc. is a huge part of not living the life you expected.
Mathilde is a 21 years old nursing student. She lives in Copenhagen in Denmark. When she was 12 she got diagnosed with scoliosis, but throughout the years she's been getting sicker and sicker and is now struggling with multiple conditions.
She's had three spinal fusions because of her scoliosis, she's had a spine infection and is now also diagnosed with allodynia, neuropathy, Irritable bowel syndrome, Anterior cutaneous nerve entrapment syndrome, osteoporosis, dystonic cramps, and several other conditions. But most of all - all of these things mean she's suffering from chronic pain.
She created her Instagram account @ungmensyg which means “Young but sick” as a way to spread awareness and hopefully be able to support others. She's always struggled to fit in and find her place, because a life with chronic pain is way different from the one a regular young student lives.
I hope you enjoy this very interesting story and you can find her Instagram page in the link below:
Instagram: ungmensyg
Переглядів: 33

Відео

Living with Psoriasis - Episode 6
Переглядів 1973 роки тому
On this week's episode of living with blank, I interview Nikki on her experience living with psoriasis. Nikki has lived with psoriasis for over 20 years and has learned many things about this experience. She created her instagram page @nikki_de.wit to share her life living with psoriasis. Going public and talking about her experience has helped her grow as a person. In this episode we talk abou...
Living with POTS - Episode 5
Переглядів 343 роки тому
On this week's episode of the Living with Blank podcast, I interview Nicole on her experience living with POTS or postural orthostatic tachycardia syndrome. Nicole is a 23-year-old, first-year medical student, and last year she was diagnosed with postural orthostatic tachycardia syndrome or POTS for short. POTS has impacted her life in a way she never expected. She was forced to give up so much...
Living with Anxiety & Depression - Episode 4 - Living with Blank Podcast
Переглядів 1713 роки тому
On this week's episode I interview my friend Hayden Grove on his experience living with Anxiety & Depression. Hayden Grove is a sports reporter and social media producer for cleveland.com, where he's covered the Cleveland Browns, Indians and Cavaliers, as well as the Ohio State Buckeyes, since 2016. A graduate of Ohio State, Grove also sings the standards of Frank Sinatra, Dean Martin, Michael ...
Living with IBS - Episode 3 - Living with Blank Podcast
Переглядів 1493 роки тому
On this week’s episode I interviewed Christine from @myibslife. Christine has been living with Irritable Bowel Syndrome since she first got diagnosed in 2007. Struggling to manage the pain, anxiety & loneliness that comes with IBS, Christine created an Instagram account called MyIBSLife in June of 2019 as a way to cope through memes and jokes. Her page has now become a home and community to 36,...
Living with ACNES - Episode 2 - Living with Blank Podcast
Переглядів 2,8 тис.3 роки тому
On this week's episode, I interview Kristen from @Acnesyndrome on her experience living with ACNES or Anterior Cutaneous Nerve Entrapment Syndrome. Kristen is a mom of two, living in Canada. She was diagnosed with Anterior Cutaneous Nerve Entrapment in December of this year after seeing many doctors; all who originally thought she had digestive issues. Her hope in telling her story is to spread...
Living with Bipolar Disorder - Episode 1 - Living with Blank Podcast
Переглядів 5713 роки тому
On this weeks episode I interview Becky Johnson on her experience living with Bipolar Disorder. Becky is a writer and mixed media artist. She has been navigating a bipolar world for most of her life and was diagnosed with Bipolar 1 Disorder 19 years ago. Check out Becky’s new bipolar inspired Instagram page @TheUpAndDownLife She is in the process of writing a book she describes as a “bipolar ro...

КОМЕНТАРІ

  • @AD-cx2mw
    @AD-cx2mw 3 місяці тому

    ❤ thank you for sharing this. I understand and this was very helpful. You seem very kind hearted and honest. Bless you

  • @chrisihouck8393
    @chrisihouck8393 6 місяців тому

    Thank you for this! I just went through the whole GI workup..again..this happened 2 others times and a GI first mentioned the nerve issue in 2021. Now today, same thing..everything seems normal, possibly a nerve..will be moving forward with THIS possibility! Almost the exact same story for me! I’m 54, 2 c-sections and an abdominal hernia repair, GI issues, UCTD/arthritis…they all run together. It makes sense that I’ve flared the worst after extreme workouts (it’s a daily part of life for me) cervical and thoracic issues..can’t thank you enough!

  • @aimeewithers7376
    @aimeewithers7376 6 місяців тому

    So helpful. I turn 44 on Saturday. Ive just found out i have bioper 😢 everything you said rang so true to me. Its so hard to get help when you need it. I hope i get meds to help me ,i want to be a stable happy mum. Having bioper is scary

  • @Ivanmattos82
    @Ivanmattos82 7 місяців тому

    Very good video thank you very much after 3 plus years of suffering and 8 gastro surgeries this is what I truly have. I found this examination video very helpful to confirm. ua-cam.com/video/bDyX3myA0Gw/v-deo.htmlsi=SnHtmf63WlzGyF7R

  • @jayzed4099
    @jayzed4099 9 місяців тому

    Thank you, this explains a lot! My pain was 100 out of 10, thought it was a gal bladder attack. As a healthy active 54 y.o female RMT- I know my body, I was bawling in agony for days. My relief- I have an athletic PT doing IASTM (Graston) deep tissue, abdominal facial release, lat, intercostals, back therapeutic massage, abdominal low intensity laser (BioFlex laser) cupping my abdomen, stretches, foam roll core, Advil, ginger turmeric tea, yoga - self employed so I have to keep strong.

  • @arlettasloan6453
    @arlettasloan6453 9 місяців тому

    I no longer remember how I ended up reading about ACNES but before that I had lots of "diagnosed" problems like H Pylori, endometriosis, Fibromyalgia, allergies, IBS, etc. Now, I legitimately have or have had some of those problems, as a certainty. But, in what, this doctor wrote that this is one of the first things that should be checked for if any severe-pain-causing syndrome or bowel condition is suspected because it might be part of the problem and, sometimes, it is the only problem; but, unfortunately, many people do not learn that until after part of their bowel is removed or they've gone through several other surgeries. He said how to treat it BEFORE injection by simply probing with a finger to find the swollen nerve spot(s) and the hollow there, then gently rubbing in the hollow. Oh, and now I just remembered how I found it. It was about my knee pain, which developed without there being any possible injury to the knee and which was made worse if I had gas. Weird! He said the pain from ACNES can radiate outward to cause knee pain, shoulder pain, lower back pain, etc. That sounded like my kind of problem so I did the abdominal probing, found the lumps as he mentioned, found the hollow and rubbed, felt better some and could finally go to the bathroom. Some of my symptoms that seem to be caused by it are radiating pain that makes it near impossible to walk well because of pain shooting into the lower back, down both legs but especially affecting the knees, and into the arms affecting my ability to type and really hurting my wrists and quite a bit of the tender spots associated with Fibromyalgia seem to clear up. Now, this doctor said one of the things that can cause this nerve entrapment is having inflammatory bowel conditions, including allergic reactions, because, the pressure can come from outside pressure, inside pressure or both. He also said the pain can be in a multitude of places in the abdominal area. I have found everything he said to be true. My pain is still very real and still gets way worse when my gut is having its issues but I do feel a little better, a little more often, as I test thing out and do some massage of some of the hollows near the inflamed nerves. I know I need to sort out my gut health the remove the pressure, too. That's always been the hard part.

  • @patsevigny5044
    @patsevigny5044 10 місяців тому

    This was so so helpful. Ty

  • @patsevigny5044
    @patsevigny5044 10 місяців тому

    This was so helpful. I went through all of this.i finally saw a dr in boston.and i am headed for pain shots.i hope it works.what is the best eay to sleep w/ this? Nighttime is awful.

  • @vileproductions8511
    @vileproductions8511 10 місяців тому

    i believe i have this from an abdominal injury i sustained doing crunches … does anyone else feel like they have to take really short breathes ? like it’s hard to breath when it flares up really bad…. the only way i can get through my day at work is wearing a a back brace that tightens up my abs as well.

  • @tammyo8922
    @tammyo8922 11 місяців тому

    OMG - hallelujah!!!!!!!!! 🙌 Thank you so much for sharing your story - it's EXACTLY what I'm going through! 🙏🙏🙏 I couldn't describe it as well as you did & I can't get any doctors to believe me. Prayers answered. ♥️ I wish you well in your health journey.

  • @ampman2011
    @ampman2011 11 місяців тому

    I also lost 10kg in the last year, intentionally

  • @ampman2011
    @ampman2011 11 місяців тому

    just got a pain near my belly button ride side, gets worse as the day goes on. Sometimes tingles and itches. Been going on for over a month, also burns later in the day. Came on a couple of days after doing torso rotations a few months ago, went away and now back for over a month. sometimes it feels like a pin prick in areas nearby. I have no other gastro symptoms, still cycle 100km most weekends and it feels great then!

  • @breestafford8878
    @breestafford8878 Рік тому

    Missdiagnosed for 20 yrs here, have just last week been offered the possibility of acnes. Gi appointment in a few days

  • @ca724
    @ca724 Рік тому

    I have the same thing but my bulges out

  • @rodmeisterful
    @rodmeisterful Рік тому

    Really helpful to those of us on the journey, thanks!

  • @KBradAdams
    @KBradAdams Рік тому

    Can anyone give us some PT exercises that might help? My surgeon gave me a prescription for PT but I feel like I can do it myself at home I just need some exercises and can't find any online or anywhere.

  • @phoenixvilletabletennisclu3243

    Any chance we can get an update on the outcome of the injections or other treatments?

  • @jackdoubleu3251
    @jackdoubleu3251 Рік тому

    Ive been living with this for the past 10 years. I also have a hernia on my left side groin , so they keep suggestions surgery right now but my pain is on the right spot same spot. Im scared to get surgery dont think it will help with the pain . I started Google can the sciatic nerve causes abdominal pain and it all lead me here. What help relieve it is laying on my back folding my leg back , HEAT (i use a blow dryer on the spot where pain is) , and sometimes water . Ive been thinking i was crazy for years because the pain comes n goes , i was thinking am i over exaggerating with gas pain ? My whole life has stoped because of this pain. Im so happy today i found this. Cant wait to tell my doctor Monday morning!

    • @staydisciplined6471
      @staydisciplined6471 6 місяців тому

      @jackdoubleu3251 I too had an in-person appointment with two hernia specialists (two separate opinions)... I was put on the schedule for hernia surgery... but my wife suggested that I get more imaging done.... this was even though the surgeon was confident... he had "done thousands of surgeries" etc . he was a little resistant to the imaging but to my surprise I received a call 2 days later stating I do not have a hernia... he called it a "muscle imbalance"? ... and suggested physical therapy. summary: continue to do your due diligence and try the most conservative routes possible before you jump to any type of surgical procedure.

    • @jackdoubleu3251
      @jackdoubleu3251 6 місяців тому

      @staydisciplined6471 thank you ! I just recently got a mri done and I get a ultrasound next week. Hopefully things go well because I really don't want surgery.

  • @JeffreyGroudan
    @JeffreyGroudan Рік тому

    She is not correct about mainly middle age women getting ACNES. ALL ages male and female. Was discovered in 1894. Carnett test in 1924 so been around just not easily diagnosed.

    • @jackdoubleu3251
      @jackdoubleu3251 Рік тому

      Yes because I'm a man and I've been suffering from it since I was 25 I'm 34 now

  • @JeffreyGroudan
    @JeffreyGroudan Рік тому

    I suffered from ACNES - severe - for nine months and after 4 trigger point sessions - the last two ineffective - I was most fortunate to find Dr Thomas Gillespie at St Joseph’s Medical Center in Phoenix. He performed Robotic Laparoscopic Surgery cutting my T8,9 and 10 abdominal nerves on 9/2/21. Went home same day CURED! I have recommended Dr Gillespie to many who are suffering from ACNES. Jeffrey Groudan Gilbert AZ

  • @LizGumerman-sm1gb
    @LizGumerman-sm1gb Рік тому

    Does anyone have a doctor recommendation for Arizona who does trigger point injections?

  • @dianer1529
    @dianer1529 Рік тому

    Has anyone tried the GRASTON technique to get relief?

  • @virginiacooper1929
    @virginiacooper1929 Рік тому

    Yes other Drs could press on my abdomen all day with no reaction but tensing up my abs and pressure right on that spot let him know that's what it was. It all started 4 years after my gallbladder surgery

  • @virginiacooper1929
    @virginiacooper1929 Рік тому

    I describe it as the same pain you get when you get a catch in your side when running but it's non-stop when sitting crunched up all day. Heating pad helps and lying down flat but that's no life. Gabapentin helps til I can have the trigger point procedure

  • @virginiacooper1929
    @virginiacooper1929 Рік тому

    I was misdiagnosed with pancreatitis and blamed it on my IBS. Finally found a Dr who asked me to raise my head and legs then pressed where my pain was and I screamed. He said you have ACNES probably from my gallbladder surgery. I was so relieved to have a diagnosis. Pain MGMT Dr will be doing a procedure Tuesday.

  • @debrathomas3989
    @debrathomas3989 2 роки тому

    Thank you these are the symptoms that I’m having, it hurts to sit, bend, and drive. But lying down it’s better

  • @rebeccaoswalt1271
    @rebeccaoswalt1271 3 роки тому

    This was a truly phenomenal episode. I’m in tears and have no words. Thank you both for what you are doing!!

    • @livingwithblank5798
      @livingwithblank5798 3 роки тому

      Thank you for the kind words!

    • @rebeccaoswalt1271
      @rebeccaoswalt1271 3 роки тому

      @@livingwithblank5798 your podcast is truly a powerful forum that I truly believe is helping people with all kinds of issues know that they are not alone and may help them feel more able to get help with whatever they are dealing with if they aren’t already! Hayden has been a great friend helping me work through my anxiety, OCD, and depression and it was really touching and heartfelt to hear his story!

    • @carolwulff5928
      @carolwulff5928 3 роки тому

      I have so many things I want to say. Thank you for this. This was so honest and inspiring in so many ways. Your words make a difference. May your journeys continue on the path of happiness. True respect for you both. 💪❤

  • @theotherway1639
    @theotherway1639 3 роки тому

    The mindfulness book "30 Days to Reduce Depression" by Harper Daniels is a good resource.