Leah Leilani
Forum Replies Created
-
I saw you post about this on social media! It’s so awesome that there’s an organization out there helping people experience the joy of surfing! I wish there was something like this offered in my coastal city. How did they accommodate to various disabilities?
-
I was just gaslit the other day by my cardiologist. He has tried to get me to take a lower dose of my medication for a while now and I’ve tried but my heart can’t take do it and I’m already on a low dose. He still won’t listen to me so I’m switching cardiologists soon. He’s been wonderful to me in the past but now that my heart is acting healthier he thinks I should be able to be on a lower dose of medication.
-
Medical gaslighting happens more than it should. I have been told so many times that what I was feeling wasn’t real, I was faking it for attention, or that the information I have received from my doctors that actually do understand me was wrong. I find that if a doctor doesn’t know something they usually won’t admit it but would rather blame things on the patient.
-
I love that you did this and doing it at the comedy club you work at served a great platform I’m sure! I’m eager to hear more about what happened and how much you guys raised!
-
I would say mental health has a huge impact on MD, at least, in my experience. Just because you have something going on mentally, doesn’t mean it won’t affect you physically. I used to have horrible insomnia and could not get the rest my body needed until I was put on anti-anxiety medication. Mental health is just as important as physical health.
-
Are they the elastic shoes laces where you can just slip your foot inside? Because I’ve thought about getting those. They would make life so much easier.
One recent thing I’ve added to my wardrobe recently are the Klassy Network padded bra tops. They’re absolutely amazing, stylish and comfortable. I can sleep in them and go to doctors appointments without a bra.
-
Unfortunately, I don’t have Hulu. There are so many subscription services out there, it’s hard to have them all. I am someone who doesn’t necessarily care if the actor portraying the PWD (Person with a disability) is actually disabled even though I think more PWD should be more welcomed into the film industry. I’m more so picky about whether the writing incorporates accurate representation. A lot of times, movie and shows include stereotypes, myths and stigmas that aren’t true when it comes to the subject of disability, only making the lives of actual PWD harder.
-
Thank you Deb for sharing this information! I have never used a cough assist of needed suctioning but I do get viral induced asthma and had a bad flare up in January brought on by a sinus infection. Coughing take so much energy and muscles to be effective and actually remove the built up mucus. I can only imagine how hard it is for people with a weaker lung function than me.
-
I just subscribed to your YouTube channel, David! I’m looking forward to watching you and your family and the content you guys create! I always like finding new disabled content creators and hearing their stories.
-
Karl, I was a floppy baby as well and was hypotonic as a little one as well which was an early sign of MD for me. You must be so used to doctors telling you that your diagnoses are invalid. These days, I just expect it and when they invalidate me, I laugh in their face. I don’t think most PCP know much beyond rashes, pink eye and general blood work.
-
That’s a great resource! I never knew this! Thank you for sharing.
-
Sort of the same thing happened with me and my mom. My boyfriend came down with the day after seeing me. I believe I had Covid but didn’t have severe symptoms and then gave it to my mom who suffered the worst and is still extremely fatigued from it.
-
Yes, sometimes the most worthwhile activities and experiences do take it out of us but that’s what makes life worth living!
-
Hi Robin. I know what it’s like to finally get diagnosed and all of a sudden connect the dots to earlier signs of the disease that you may have dismissed. I am happy for you that you now have a diagnosis and at least have an answer to and label to your symptoms. Hopefully, the forums will provide you with helpful ways of dealing with all that you are facing. I will say that it may take you a while to feel comfortable in your newly diagnosed body but trust the process and be open to befriending members of the MD community.
-
Hey Karl! Thank you for joining our forums and sharing your story. It’s sounds like you’ve had a very full life and have a wonderful family that can be your support system. I too was a “floppy baby” when I was born and needed physical therapy at an early age to build muscle. I was then diagnosed with Mitochondrial Myopathy when I was 9.
-
Rick, I’ve never heard of using Botox to treat the sphincter but that’s absolutely genius! What an amazing suggestion by that neurologist. I love doctors that truly are problem solvers. You must be so happy to have that problem solved and be able to have that quality of life back.
-
Kimberly, I just got my fourth Pfizer vaccine last week and I had all the side effects the following night. I was nauseous, had chills and a fever as well as severe body aches. I took some Tylenol and was able to go back to sleep. The next day, I just felt very tired and sleepy.
-
Larry, does social interaction exhaust you? I’ve noticed that I’ve become more introverted as I’ve grown older and a possible factor might be because social interaction leaves me very mentally and physically fatigued.
-
I’m glad I could give you that resource Mary. I do the exact same thing. My knee-jerk reaction is to say “no” or “I can do it.” Sometimes I pause and then rethink my statement and do end up accepting the help because I do actually need it.
-
Thank you for correcting me in the onset Pete. I also experience a type of tachycardia where my heart rate will rise if I’m particularly tired or sick. Do you have a good cardiologist that you see?
-
Larry, I can understand how you feel. Since Covid, I feel like I’ve lost a lot of hope in humanity and the good in people. I also think people are very much lacking in the ability to socialize and maintain manners. It most definitely is easier to stay in our little controlled bubbles but I crave the outside and going on adventures too much to be a full-time homebody.
I have found that the book “The Art of Not Giving an F***” has been very helpful for me to stop focusing on other people before myself.
-
These tips are indeed valuable for many people with NMD. It was only a couple years ago that someone in the MD community told me that blood draws become more difficult because of muscle atrophy-something that never even dawned on me. I had a friend that had Stage 4 cancer and he didn’t have any good veins towards then end of his life except for the veins in his feet.
-
Wow, that’s quite something for you’re whole family to get it and you didn’t! I had a very contagious intestinal infection last year and with proper precautions my parents were able to avoid catching it too. Even now with the Covid case numbers being low, I’m very diligent about sanitizing things.
-
Kimberly, thank you so much! I want to start off by saying that at the beginning of changing my diet wasn’t easy. It’s amazing the amount of fat that’s in food in today’s world. Since my mom is the one who makes my food, I really owe it all to her. We both recommend reducing your intake of red meat and if you still want to incorporate meat into foods then go with a lean meat like low fat beef. Portion size is also an important factor. Since my mom like to cook, she found a woman on YouTube, Amanda Lewis, who makes Weight Watchers recipes that are delicious and healthy. We’ve also substituted mayonnaise for mustard and all our salad dressings are low fat. And we almost always have chopped vegetables with a meal. Minimizing sugar intake helps too.
I hope these tips help. If you get overwhelmed please don’t hesitate to contact me again her on the forum. You can even private message me in my profile on here.