Such an important video - THANK YOU RACHELLE for pulling this together. There are so many lives out there struggling to make it through each day and knowing that our friends and family members can ease that suffering just with kindness, attentiveness and compassion is huge. I can't tell you how many times I've heard "You still have that?" or "You're experiencing that right now?" Like Kim says in the video - YES. We experience it 24/7. And if it's gone for a moment, you will know about it because we will be shouting it from the mountaintops! Rachelle, you continue to be a beacon of light for so many - please keep sharing your truth with the world.
I cried so hard, when I seen your son , my biggest guilt was knowing my son had missed out on so much of our life together that his dabbling had. This illness has me go from a wealthy , self made ,string confident women to a basicly hermit, loosing everything I worked so hard for to living in a community home (creating more health issues) to even loosing 3 of my 4 children and 8 out 10 grandchildren . Being told I'm crazy daily, living with this has change me dramaticly, living this nightmare 24/7 . Scared out of my wits waiting for death to take me , I was sure I had some terminal illness, that the drs could or even would be bother to find, I live with this for 10yrs pretty much alone because people don't understand or are to busy with thier own issues, I'm lucky I still have friends ,but they don't really understand what we go through . I'm now hoping I can find someone that can give me a true diagnosis. Wish me luck as I still know this may take a few more years to get the help I need . If it wasn't my love for life. I honestly don't think I could deal with it as long as I have bless you all that have this sole destroying illness
This breaks my heart. I’m so sorry you’ve lost so much. I’m not sure if you have Facebook, but I started a support group for those of us with vestibular issues, some are undiagnosed like you. You should join us. I’m here if you need to talk more.
My mom was recently diagnosed with MDDS and she’s adapting this new diagnosis. We understand it’s an unknown disorder and that it’s incurable. But we’re trying to stay positive and blessed. We’re hopeful
You did such a great job on this, you had me in tears! 👏 Your son is so sweet, I'm so happy he's there for you. And I'm so proud of Kim for stepping up and being a part of your awareness video! This was a great way to raise awareness during J.A.M.
This condition is a nightmare hell... I've thought about ending my life many times because this is so debilitating. Everyday is a struggle... The only thing keeping alive is I have a girlfriend... That's it... I just walk all day for relief... I can't ever be still because it feels like there's a huge earthquake and gravity pushing me.
@@beautifullybroken9373 thank you.. I'm in the mdds fb support group... I check it everyday.... The medical doctors can't help so I'm just left everyday hoping for a miracle... Nothing I can do😔
Hi! Can the sensaion start off feeling rocking & swaying and then change into a different type of dizziness? Can it change over the time? Morphing into an other dizzy feeling or it usually stays the same bouncy&rocky one ? Thanx
(And I’m not talking about the intensity of it 🙂) throughout the time i feel dizzy it has changed. Always a different sensation. Every other month it changes into something else
Mine has definitely morphed. I bounce between MdDS and Vestibular migraines. I find the vestibular migraines are the main cause of my dizziness and the MdDS is more the motion
God Bless You Girl. Loved your interview on Emma’s channel
God bless you too Andi ♥️ So glad you were able to watch.!!
We learn a lot about those around us when our chips are down.
Such an important video - THANK YOU RACHELLE for pulling this together. There are so many lives out there struggling to make it through each day and knowing that our friends and family members can ease that suffering just with kindness, attentiveness and compassion is huge. I can't tell you how many times I've heard "You still have that?" or "You're experiencing that right now?" Like Kim says in the video - YES. We experience it 24/7. And if it's gone for a moment, you will know about it because we will be shouting it from the mountaintops! Rachelle, you continue to be a beacon of light for so many - please keep sharing your truth with the world.
Thank you for being a part of this!! You are a beacon of light as well❤️❤️❤️
I cried so hard, when I seen your son , my biggest guilt was knowing my son had missed out on so much of our life together that his dabbling had. This illness has me go from a wealthy , self made ,string confident women to a basicly hermit, loosing everything I worked so hard for to living in a community home (creating more health issues) to even loosing 3 of my 4 children and 8 out 10 grandchildren . Being told I'm crazy daily, living with this has change me dramaticly, living this nightmare 24/7 . Scared out of my wits waiting for death to take me , I was sure I had some terminal illness, that the drs could or even would be bother to find, I live with this for 10yrs pretty much alone because people don't understand or are to busy with thier own issues, I'm lucky I still have friends ,but they don't really understand what we go through . I'm now hoping I can find someone that can give me a true diagnosis. Wish me luck as I still know this may take a few more years to get the help I need . If it wasn't my love for life. I honestly don't think I could deal with it as long as I have bless you all that have this sole destroying illness
This breaks my heart. I’m so sorry you’ve lost so much. I’m not sure if you have Facebook, but I started a support group for those of us with vestibular issues, some are undiagnosed like you. You should join us. I’m here if you need to talk more.
My mom was recently diagnosed with MDDS and she’s adapting this new diagnosis. We understand it’s an unknown disorder and that it’s incurable. But we’re trying to stay positive and blessed. We’re hopeful
You did such a great job on this, you had me in tears! 👏
Your son is so sweet, I'm so happy he's there for you. And I'm so proud of Kim for stepping up and being a part of your awareness video! This was a great way to raise awareness during J.A.M.
This condition is a nightmare hell... I've thought about ending my life many times because this is so debilitating. Everyday is a struggle... The only thing keeping alive is I have a girlfriend... That's it... I just walk all day for relief... I can't ever be still because it feels like there's a huge earthquake and gravity pushing me.
My heart aches for you. I’m so sorry you are suffering greatly. Have you joined a support group. I run one on Facebook if you ever want to join. Hugs
@@beautifullybroken9373 thank you.. I'm in the mdds fb support group... I check it everyday.... The medical doctors can't help so I'm just left everyday hoping for a miracle... Nothing I can do😔
Hi! Can the sensaion start off feeling rocking & swaying and then change into a different type of dizziness? Can it change over the time? Morphing into an other dizzy feeling or it usually stays the same bouncy&rocky one ? Thanx
(And I’m not talking about the intensity of it 🙂) throughout the time i feel dizzy it has changed. Always a different sensation. Every other month it changes into something else
Mine has definitely morphed. I bounce between MdDS and Vestibular migraines. I find the vestibular migraines are the main cause of my dizziness and the MdDS is more the motion
How is your dizziness feels like with the VM? more like a spin/light headedness? Thanx for replying!☺️
Lily Schreiber yes exactly