@leah-leilani
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Leah Leilani started the topic Healthy Doesn’t Look One Way in the forum Adults With Muscular Dystrophy 5 days, 13 hours ago
What is your opinion on the body positivity movement?
On one hand, I do believe that we live in a fat-phobic country here in the United States. A certain standard puts pressure on us to look one way and that is tall, skinny, and able-bodied. Beauty privilege does exist and not only is it toxic but it affects our internalized self-worth. A…[Read more] -
Leah Leilani started the topic Getting a Second COVID-19 Booster Shot in the forum Coronavirus (COVID-19) and MD 6 days, 14 hours ago
I just got my fourth Pfizer vaccine a couple of weeks ago. Unfortunately, I suffered from all the side effects one can expect from a Covid vaccine such as nausea, fatigue, headache, body aches, fever, and even, surprisingly, some heart palpitations. Thankfully, none of those symptoms lasted longer than approximately 18 hours whereas, my mom got…[Read more]
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Leah Leilani replied to the topic Omicron, are you worried? in the forum Coronavirus (COVID-19) and MD 1 week, 3 days ago
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.
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Leah Leilani replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults With Muscular Dystrophy 1 week, 3 days ago
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.
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Leah Leilani replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults With Muscular Dystrophy 1 week, 3 days ago
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.
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Leah Leilani replied to the topic Actor and Comedian, Gilbert Gottfried’s Passing in the forum Adults With Muscular Dystrophy 1 week, 3 days ago
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?
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Leah Leilani started the topic Basic Assistance During Your Work Shift in the forum Adults With Muscular Dystrophy 1 week, 5 days ago
At work, do you have someone to help you eat during breaks, or do you suffer through until the end of your shift? Have you asked your employer if you could bring along a PCA (Personal Care Assistant) to help with basic needs such as eating, drinking, and using the restroom?
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I always worry about the bathroom situation at one of my jobs, The building is old, and the accessible stall is not accessible. So I have to go across the street to a bar that opens in the early afternoon with an access le stall. It is a pain, but I do love the job. I just hope someday soon it will be made right.
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Leah Leilani started the topic Actor and Comedian, Gilbert Gottfried’s Passing in the forum Adults With Muscular Dystrophy 2 weeks ago
Last week, actor and comedian, Gilbert Gottfried passed away at the age of 67 due to recurrent ventricular tachycardia caused by myotonic dystrophy type 2.
When I heard the news from a Facebook group that he had a form of muscular dystrophy, I was shocked. I knew Gilbert Gottfried as the voice of the parrot in the Disney animated film, Aladdin.…[Read more]-
I had no idea that he had muscular dystrophy! I wonder if he kept it more private for fear of not being included in Hollywood? Or if that is why his voice sounded like that? (if it affects voice or strength of the voice) Thanks for sharing this.
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Leah Leilani started the topic Practical and Lightweight iPhone Cases in the forum Adults With Muscular Dystrophy 2 weeks, 5 days ago
Which smartphone do you own and what kind of case works best for you?
I just switched from an iPhone 8 to a 13. I’m so glad I made the switch. It’s so much faster and smoother. The bigger screen is easier on my eyes and makes texting a breeze. The camera will also help me take better photos to resell clothing as well.
A PopSocket is ess…[Read more]-
I have dropped my phone many times and even ran it over with my power chair, but the Otterbox has protected it. However, when it does fall on the ground because my phone is heavy, it can be challenging to use the grabber to pick it up, sometimes, it falls behind the bed, and I have to wait for someone to come by and pick it up for me. Also, I…[Read more]
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Leah Leilani replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults With Muscular Dystrophy 3 weeks, 6 days ago
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…[Read more]
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Leah Leilani started the topic The Dilemma With Deodorant and Skin Irritation in the forum Adults With Muscular Dystrophy 3 weeks, 6 days ago
I am not a very sweaty person but when I started reselling clothing and being a bit less sedentary, it was like puberty all over again. I had to switch from a holistic crystal deodorant to something more substantial to control my body odor.
Since switching to an antiperspirant, my pits have been itchy and irritated. I tried both a roll-on and a…[Read more] -
Leah Leilani started the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults With Muscular Dystrophy 4 weeks ago
Would you consider yourself a people pleaser?
When I was experiencing the onset of my disease, I had a paralyzing fear of being a burden. I never wanted people, especially my parents, to feel like I was too much to handle.
I still carry this fear with me but it’s not as prominent. Although, the people-pleasing part of me remains present.
The…[Read more] -
Leah Leilani started the topic Oscars Finally Recognizes the Disability Community in the forum Adults With Muscular Dystrophy 1 month ago
Even though there were many cringe-worthy aspects from last night’s Oscar Awards, there was one incredible and profound moment that won over my heart-the Best Picture award being given to the movie “CODA.”
Finally, the Academy Awards are taking notice of movies representing the disability community and the lives of the members within it.
Althoug…[Read more] -
Leah Leilani posted a new activity comment 1 month, 1 week ago
I know, right? I have been attempting to save money this year and it’s nearly impossible what with living in California with a disability. Yesterday, my mom drove me to a physical therapy appointment that was a little bit of a drive. she calculated the amount of gas we used to be approximately $17. That’s insane! And yes, FOMO can be a big factor…[Read more]
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Leah Leilani posted a new activity comment 1 month, 1 week ago
I feel the exact same way. my parents have always been my caregivers and because of that, moving out is so scary. although, I do plan on living nearby and if need be, I can always go back home for a few days if I get sick or my boyfriend travels somewhere. It would be helpful to know what SSI will do in terms of increasing or decreasing my…[Read more]
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Leah Leilani posted a new activity comment 1 month, 1 week ago
As a woman and especially a disabled woman, I am always on guard and checking my surroundings. I keep a whistle on my purse in case anything happens and I need help. my mom also carries pepper spray with her but you really have to be careful about which way the wind is blowing. the old keys between the fingers is a classic as well.
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Have you ever had to use it, and what was the situation? There are times when I have wondered if I need something, but usually, I am with friends or family. I have a taser in my amazon shopping cart, haha. People need to check with their state’s laws to see what they can carry for protection.
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Leah Leilani posted a new activity comment 1 month, 1 week ago
Oh, I’ve heard that’s a good one! I just haven’t gotten around to reading it yet. I’m currently reading one called “The Conscious Closet.” It’s a good read for anyone wanting to build a more sustainable wardrobe.
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Leah Leilani posted a new activity comment 1 month, 1 week ago
I think that’s a very valid question. I, myself am not a parent either and feel there are definitely other forms of MD that gets more funding and research than my own disease. I don’t let it bother me but I can imagine how heart breaking it may be for a parent who has just received a diagnosis for their child. Unfortunately, a diagnosis doesn’t…[Read more]
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Leah Leilani replied to the topic Good Results From My Recent Blood Draw in the forum Adults With Muscular Dystrophy 1 month, 1 week ago
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 t…[Read more]
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Leah Leilani replied to the topic Updating Respiratory Equipment in the forum Muscular Dystrophy Tips, Tricks and Advice 1 month, 1 week ago
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…[Read more]
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Wow, a fourth shot! I understand because of your condition, but the side effects of the third one were so bad for me! I am glad it didn’t put you out of commission!