Muscle Dysfunction

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    Post

    If you are Narcoleptic (or drop & spill things) you need this in your life #Narcolepsy #Spoonie

    So I posted this under somebody else's question about how to drink more water and it occurred to me that this would be also be a really good hack for spoonies and for people with narcolepsy.

    as a narcoleptic I have woken up many times with a lap full of hot tea before I discovered these cups.

    these cups require that you hold down a button in order to drink from them so if you have a sleep attack or you let go of the cup it automatically seals and doesn't spill.

    They're great they keep your beverage hot for about 7 hours or cold for about 12. I get the 20 oz ones and three refills of each one gives me my fluids for the day as well.

    The items I use can be found at the following link.

    The water bottle is not self-sealing. Just be Contigo cups.

    Question...

    #hack
    #MuscleDysfunction

    Post

    Need mobility scooter advice, please #Lupus #Scleroderma #Myositis #MuscleDysfunction #MobilityAids #MixedConnectiveTissueDiseaseMCTD

    Hi everyone! Does anyone have recommendations for a good mobility travel scooter? I’ll mostly use it on sidewalks but want it to be sturdy enough to take sightseeing while on vacation so there may be some gravel or dirt roads occasionally. My husband or daughter would be disassembling it and putting it in the car for me, but still I don’t want it to be too heavy. I can walk short distances, but I can’t walk or stand for very long. Any advice would be greatly appreciated!

    Post
    See full photo

    What's the hardest part about cooking for you?

    It's disappointing at 25 when your hands and bones hurt so much from 2 seconds of slicing veggies or trying to open a jar. Just another thing to fight through.

    Not anymore, muhahahahaha 😈. We win this round warriors.

    These are things that I or my family have used to help us feel like we can be independent through all of the chronic pain, muscle weakness or tremors.

    I love the electric veggie shooter. IT saves me time and prevents muscle cramps in my hands, also frustration?
    🎊https://amzn.to/3clLgGo

    A family member loved this because it helped eating with tremors and muscle weakness

    🎊Goodie Strap: amzn.to/2ZZJZzY who doesn't love this?

    Hand's free way of opening a jar. Electric Jar opener:
    🎊https://amzn.to/2HeVJbd

    Also, this is just amazing because my hands cramp when trying to mask potatoes, so this is a life saver. Electric Masher:
    🎊https://amzn.to/2FYrBQP

    Cutting board is really helpful because of the spears in them. It locks the veggies in so you can cut.
    Just don't forget where they are like meee:
    🎊https://amzn.to/32VlrtC

    .

    #Lupus
    #Fibromyalgia
    #MuscleDysfunction
    #EssentialTremor
    #ParkinsonsDisease
    #PosturalOrthostaticTachycardiaSyndrome
    #ChronicPain
    #MyalgicEncephalomyelitis
    #ChronicFatigue

    Post

    First post 😊

    So I posted my first thought but I didn’t add it to a specific page which is why I’m sharing the link on here 😊 if anyone can go relate to any of it, I’d love to know more! Still undiagnosed
    #ChronicPain #NervePains #MuscleDysfunction

    Post

    Still undiagnosed

    Okay so I don’t really know how this all works - I’m always reading other people’s posts but I’ve never done one myself 😳
    I’ve dealt with different types of pain (nerve, muscle, joint) for a number of years now and I’ve recently been registered as disabled.

    However, according to my most recent consultant, I’m an ‘unusual lady’. After having test after test, including a muscle biopsy, I’m still undiagnosed.

    A few conditions have been ‘mentioned’:
    - Myositis
    - Mitochondrial disease
    - Lupus
    - MS
    ...and those are just the ones I can remember!

    One of the more difficult symptoms to explain is the high level of muscle weakness . This is the only way I’ve managed to describe it to doctors:

    Imagine running to the top of the Eiffel Tower and, rather than taking a break at the top, immediately start running back down. Then imagine someone asking you to walk 5 metres on flat ground, as soon as you get to the bottom. That’s what everyday walking feels like for me.

    Don’t know if anyone has similar experiences - just thought I’d post & see! #Myositis #MitochondrialDisease #Lupus #NervePains #MuscleDysfunction #Jointpain #MultipleSclerosis

    Post

    My miracle journey

    My name is Carina Imbrogno and I would like to share and publish my miracle story with others to help inspire them and give them hope it’s one way of me paying it forward.

    My name is Carina Imbrogno and I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos Syndrome kyphoscoliosis type, but it was not diagnosed until 2015. This illness caused me to have severe scoliosis kyphosis since the age of two. I am the youngest of eight children.  We were four girls and four boys.  My oldest sister died from Leukemia as a toddler.  I grew up with a very difficult father.  I realized years later that my father was always ashamed of me because of the way I looked. Growing up I was also bullied and teased by other kids due to my very prominent rib hump.  Having many surgeries and wearing orthopedic braces wasn’t easy!

    I began wearing orthopedic braces and body casts from the age 2 to the age of 11 and then again as an adult.  I had my first open back surgery at 10 years old.  My spine was collapsing so fast I was having trouble breathing.  The doctors explained to us that I needed emergency open back surgery  because my ribs were collapsing on my lungs making it difficult to breathe.  I had a curve of 89 degrees and another curve of 56 degrees. Doctors explained to us that I have a deadly type of kyphoscoliosis and without surgery I would die.  I had surgery and had a rod put in to stop my spine from curving any further.

    Unfortunately I had complications.  A few days after being sent home from the hospital I developed a very high fever.  I went to see the doctor and he discovered I had a massive infection from the surgery. I almost died from this infection which left me hospitalized for three months.  Fortunately the infection finally healed but over time the rod that was put in as a child began giving me problems.  By the time I was 18 the rod had somehow moved out of place and doctors think it was causing my migraine headaches.  I finally had to go for another surgery to remove part of the rod.  My migraine headaches finally went away. However I struggled with my severe and painful rib hump and was always fearful that I would never find anyone because of the way I looked.

    In 1996 I was accepted to go to school at the Fashion Institute of Technology in New York City to study textile design.  I graduated in 2000 with a grade point average of 3.8.  My art teacher Susan Rietman who I am very close to always supported me in my work and motivated me to believe in myself.  Shortly after I graduated I met someone and got married but, sadly found myself in an abusive relationship.  After I separated from my abusive husband I was diagnosed with endometriosis. I had five abdominal surgeries for this illness which resulted in more complications.  It was a very painful illness to endure.   During this time I had a dream of God telling me that I would go through many difficulties but I wouldn’t die and He would always be with me. In late 2004 I had a surgery to correct my prominent rib hump but it was unsuccessful and caused my spine to collapse at a fast rate.  I have a very rare and aggressive type of kyphoscoliosis. The doctors told me they couldn’t help and that I would end up in a wheelchair and then die. I remained bedridden and highly medicated to stay alive.  By 2006 I had a side curve of 115 degrees and a concave curve of 120 degrees.  I felt hopeless and very scared. No doctor would touch me because my condition was so severe and complex and I only had State insurance which doesn’t cover a $500,000 plus surgery.

    One night I had a dream of a white light-filled Being who put His hand through me and straighten my spine.  Afterwards in my dream I stood up and walked away.  Two weeks later I found the doctor who saved my life. My oldest sister Ana took me to Texas where this doctor was able to correct my collapsed spine and rib hump. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in size to minimize the rib hump.  I grew five inches from the surgery.  This was a miracle for me.  The success of my operation was called a miracle by Dr. Shelekov and his entire team who preformed the operation. I am forever grateful for what he did for me. Unfortunately he passed away two years later.

    After the spinal surgery I was doing so well that I was able to take a trip to Argentina to see my parents.  I especially wanted to see my mother who hadn’t believed I was well.  Unfortunately a couple of years after my surgery I started to suffer from severe depression and anxiety.   I had never felt this way before.  The doctors eventually  discovered I had ovarian failure and was going into early menopause. There were no medications I could tolerate due to the many side effects and sensitivities I have.  At this point I was 33 years old.  I was living in my brother’s basement at this time and my unmedicated depression and anxiety got so bad that I spent four years feeling hopeless and bed ridden. The one person who gave me hope was Father Frank who visited me.   In 2013 I went to the Mayo Clinic in Minnesota where they discovered I had pelvic floor muscle dysfunction which added to my IBS making it hard to go to the bathroom.

    Amidst of all this suffering one day in 2013 I got a letter in the mail saying I was next on the list to rent a small apartment for people with disabilities in Stamford, CT.  The news made me so happy because I had waited for eight years for this opportunity, but at the same time I was scared due to my many health issues.  By October of 2014 I was so ill that I wasn’t able to drink or eat and weighed only 92 pounds. I remember calling my college professor Susan Rietman who advised me to come to Mount Sinai where they were able to find a treatment that I could tolerate.  Another miracle. I spent my 40th birthday in Mount Sinai hospital.  At this time I was praying to God and I promised Him if He saved my life once again I would start drawing and painting since art was always something I wanted to do.  After a few weeks I began feeling better but just a few days after being discharged from the hospital I came down with a pulmonary embolism and once again landed in the hospital.  Doctors warned me if the blood thinners didn’t work I could die. I was petrified but I kept thinking about my dream with God and somehow I knew I was going to be okay.

    A year before when I watched a movie called Heaven is For Real I was introduced to the artist Akiane Kramarik’s life and work.  This child prodigy inspired me to do art, especially to paint.  Her story about meeting God helped me to see and believe that my dreams where for real.  One of my dreams is to meet her.

    As soon as I was better a close friend of mine David Anderson helped financially to buy art supplies to start my art.  He always believed in me even when I doubted.  I began to teach myself how to draw and paint. I am mostly self taught in fine arts. I should mention that for me learning is a true challenge because I have Attention Deficit Disorder and Retention Deficit Disorder, two challenging learning disabilities. I’ve discovered that I am able to learn best hands on.  So for the past four years I’ve been drawing and painting in different mediums such as gouache, dyes, watercolors, color pencil, graphite, acrylics, oils and pastels. Because of my disabilities and limitations I work a lot from photographs.

    I started doing portraits after I began volunteering in a daycare doing arts and crafts with children once a week. They inspire me to draw and paint them.  I also draw and paint animals.  I also love to paint animals, including people’s pets.  I work with a lot of details so my work looks highly realistic. I have a true passion for what I do. I have entered over 10 juried exhibits where my work was accepted in all the shows. In January of 2017 I won third place at the Stamford Art Association.  I entered the very first portrait I ever did which was of my mother, who sadly I’m losing to Alzheimer’s disease.  Winning with the portrait of my mother meant so much to me.  I went on to win first place with the portrait of Jaden in graphite at the Rowayton Art center. And I won third place with a graphite portrait of Melissa. My accomplishments have made me work ever harder.  My story was published in a Spanish newspaper called La Voz and most recently it was published in English and Spanish in a magazine called Latin Colors..  You can go to the following link,‭Carina Imbrogno, Artist and ‬Champion of Life – Liber-Art.

    I’m very grateful for the connections I’ve made through Instagram.  I got very inspired by a friend on Instagram by the name of Richard Macwee who is based in Scotland and is an amazing wildlife artist.  His work inspired me to continue drawing animals. I also feel very grateful and blessed to have migrated with my famliy to the USA where my life has been saved so many times.  My goal is to eventually teach what I know and to keep getting better and better at what I do.  I am open to trying different techniques. I have my studio is my small living room but I hope to one day have a studio away from my apartment.

    https://caimbrogno.wixsite.com/mysite

    Post

    My Miracle Journey

    I would like to share my miracle story with others to help inspire them and give them hope it’s a way of me paying it forward.

    My name is Carina Imbrogno and I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called ehlersdanlossyndrome kyphoscoliosis type, but it was not diagnosed until 2015. This illness caused me to have severe scoliosis kyphosis since the age of two. I am the youngest of eight children.  We were four girls and four boys.  My oldest sister died from leukemia as a toddler.  I grew up with a very difficult father.  I realized years later that my father was always ashamed of me because of the way I looked. Growing up I was also bullied and teased by other kids due to my very prominent rib hump.  Having many surgeries and wearing orthopedic braces wasn’t easy!

    I began wearing orthopedic braces and body casts from the age 2 to the age of 11 and then again as an adult.  I had my first open back surgery at 10 years old.  My spine was collapsing so fast I was having trouble breathing.  The doctors explained to us that I needed emergency open back surgery  because my ribs were collapsing on my lungs making it difficult to breathe.  I had a curve of 89 degrees and another curve of 56 degrees. Doctors explained to us that I have a deadly type of kyphoscoliosis and without surgery I would die.  I had surgery and had a rod put in to stop my spine from curving any further.

    Unfortunately I had complications.  A few days after being sent home from the hospital I developed a very high fever.  I went to see the doctor and he discovered I had a massive infection from the surgery. I almost died from this infection which left me hospitalized for three months.  Fortunately the infection finally healed but over time the rod that was put in as a child began giving me problems.  By the time I was 18 the rod had somehow moved out of place and doctors think it was causing my migraine headaches.  I finally had to go for another surgery to remove part of the rod.  My migraine headaches finally went away. However I struggled with my severe and painful rib hump and was always fearful that I would never find anyone because of the way I looked.

    In 1996 I was accepted to go to school at the Fashion Institute of Technology in New York City to study textile design.  I graduated in 2000 with a grade point average of 3.8.  My art teacher Susan Rietman who I am very close to always supported me in my work and motivated me to believe in myself.  Shortly after I graduated I met someone and got married but, sadly found myself in an abusive relationship.  After I separated from my abusive husband I was diagnosed with endometriosis. I had five abdominal surgeries for this illness which resulted in more complications.  It was a very painful illness to endure.   During this time I had a dream of God telling me that I would go through many difficulties but I wouldn’t die and He would always be with me. In late 2004 I had a surgery to correct my prominent rib hump but it was unsuccessful and caused my spine to collapse at a fast rate.  I have a very rare and aggressive type of kyphoscoliosis. The doctors told me they couldn’t help and that I would end up in a wheelchair and then die. I remained bedridden and highly medicated to stay alive.  By 2006 I had a side curve of 115 degrees and a concave curve of 120 degrees.  I felt hopeless and very scared. No doctor would touch me because my condition was so severe and complex and I only had State insurance which doesn’t cover a $500,000 plus surgery.

    One night I had a dream of a white light-filled Being who put His hand through me and straighten my spine.  Afterwards in my dream I stood up and walked away.  Two weeks later I found the doctor who saved my life. My oldest sister Ana took me to Texas where this doctor was able to correct my collapsed spine and rib hump. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in size to minimize the rib hump.  I grew five inches from the surgery.  This was a miracle for me.  The success of my operation was called a miracle by Dr. Shelekov and his entire team who preformed the operation. I am forever grateful for what he did for me. Unfortunately he passed away two years later.

    After the spinal surgery I was doing so well that I was able to take a trip to Argentina to see my parents.  I especially wanted to see my mother who hadn’t believed I was well.  Unfortunately a couple of years after my surgery I started to suffer from severe depression and anxiety.   I had never felt this way before.  The doctors eventually  discovered I had ovarian failure and was going into early menopause. There were no medications I could tolerate due to the many side effects and sensitivities I have.  At this point I was 33 years old.  I was living in my brother’s basement at this time and my unmedicated depression and anxiety got so bad that I spent four years feeling hopeless and bed ridden. The one person who gave me hope was Father Frank who visited me.   In 2013 I went to the Mayo Clinic in Minnesota where they discovered I had pelvic floor muscle dysfunction which added to my IBS making it hard to go to the bathroom.

    Amidst of all this suffering one day in 2013 I got a letter in the mail saying I was next on the list to rent a small apartment for people with disabilities in Stamford, CT.  The news made me so happy because I had waited for eight years for this opportunity, but at the same time I was scared due to my many health issues.  By October of 2014 I was so ill that I wasn’t able to drink or eat and weighed only 92 pounds. I remember calling my college professor Susan Rietman who advised me to come to Mount Sinai where they were able to find a treatment that I could tolerate.  Another miracle. I spent my 40th birthday in Mount Sinai hospital.  At this time I was praying to God and I promised Him if He saved my life once again I would start drawing and painting since art was always something I wanted to do.  After a few weeks I began feeling better but just a few days after being discharged from the hospital I came down with a pulmonary embolism and once again landed in the hospital.  Doctors warned me if the blood thinners didn’t work I could die. I was petrified but I kept thinking about my dream with God and somehow I knew I was going to be okay.

    A year before when I watched a movie called Heaven is For Real I was introduced to the artist Akiane Kramarik’s life and work.  This child prodigy inspired me to do art, especially to paint.  Her story about meeting God helped me to see and believe that my dreams where for real.

    As soon as I was better a close friend of mine David Anderson helped financially to buy art supplies to start my art.  He always believed in me even when I doubted.  I began to teach myself how to draw and paint. I am mostly self taught in fine arts. I should mention that for me learning is a true challenge because I have Attention Deficit Disorder and Retention Deficit Disorder, two challenging learning disabilities. I’ve discovered that I am able to learn best hands on.  So for the past four years I’ve been drawing and painting in different mediums such as gouache, dyes, watercolors, color pencil, graphite, acrylics, oils and pastels. Because of my disabilities and limitations I work a lot from photographs.

    I started doing portraits after I began volunteering in a daycare doing arts and crafts with children once a week. They inspire me to draw and paint them.  I also draw and paint animals.  I also love to paint animals, including people’s pets.  I work with a lot of details so my work looks highly realistic. I have a true passion for what I do. I have entered over 10 juried exhibits where my work was accepted in all the shows. In January of 2017 I won third place at the Stamford Art Association.  I entered the very first portrait I ever did which was of my mother, who sadly I’m losing to Alzheimer’s disease.  Winning with the portrait of my mother meant so much to me.  I went on to win first place with the portrait of Jaden in graphite at the Rowayton Art center. And I won third place with a graphite portrait of Melissa. My accomplishments have made me work ever harder.  My story was published in a Spanish newspaper called La Voz and most recently it was published in English and Spanish in a magazine called Latin Colors..  You can go to the following link,‭Carina Imbrogno, Artist and ‬Champion of Life – Liber-Art.

    I’m very grateful for the connections I’ve made through Instagram.  I got very inspired by a friend on Instagram by the name of Richard Macwee who is based in Scotland and is an amazing wildlife artist.  His work inspired me to continue drawing animals. I also feel very grateful and blessed to have migrated with my famliy to the USA where my life has been saved so many times.  My goal is to eventually teach what I know and to keep getting better and better at what I do.  I am open to trying different techniques. I have my studio is my small living room but I hope to one day have a studio away from my apartment.  #leukemia #ehlersdanlossyndrome #raredisease #chronicillness

    https://caimbrogno.wixsite.com/mysite

    Post

    Neck & shoulder pain for months. Nothing works. What to do?


    #MuscleDysfunction

    Post
    See full photo

    Don’t Give Up Too Soon...

    This is one of the verses that gives me comfort.
    So, when is the ripe time?
    It is the time you'll enjoy what you've prayed for.
    It is the time that will shock your mockers.
    It is the time you'll laugh best and your enemies will bury their heads in shame.
    It is the time your worries will be over.

    Beloved, I don't know what you've been seeking the Lord for, I don’t know what is eating up your mind. The Lord will hasten to make it happen in your life now in Jesus name.
    #Depression #Autism #CheerMeOn #MentalHealth #MuscleDysfunction #KidneyDisease #SocialAnxiety #Trauma