emma
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Brianna this article was amazing, congrats. Very well written and so so true, I identified a lot!
It happened to me just a few days ago, with an influencer with SMA sharing her first days of a new med and already noticing so much progress, and it was weird because i felt like a wave of jealousy taking over me even when i wanted to just be happy for someone in the community. I really was very frustrated with myself and didn’t feel good having those kind of feelings. Also you know when you think you’re over something (like not being able to get a new medication) and then something happens and you’re like : Well apparently nope still there. It sucks!
Your article helped a lot with that, so great timing haha and thank you.
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Hey!
<p class=”p1″><span class=”s1″>Same as Alyssa! I’m on the pill since 1 year and oh wow does it change life ! I had to try a few different ones to find the good one but how cool it is to not have PMS or uterus cramps or add more logistics to get changed often. I would get so tired and weak too. I think I talked about it here but I would also catch colds more often when i was on my periods, so weird but the timing always coincidated. Also my hair got greasy way less fast since on the pill and that’s great when you don’t have the spoons to wash it every 2 days.</span></p>
<p class=”p2″><span class=”s1″>Incredible how hormones have so much power on our body (and mind) !</span></p> -
<p class=”p1″>Very very interesting topic! And very well written (like all your articles btw)</p>
<p class=”p2″><span class=”s2″>Experienced kinda the same thing especially with my parents. When you’re so used to time everything according to their schedule, their moods, their well being while trying to also fulfill your needs wow what an emotional and mental charge. (Sometimes i feel like an emotional sponge) « Okay so my mother turned me twice this night so to equilibrate between them i’ll go to the bathroom at 2 with my father so I don’t have to go again when he works but for this i have to only drink 3 cups of water but since bathroom is the hardest i’ll ask my mom for the next thing» or « My mom had a really bad day at work and just wants to go to sleep but i just started a great skin routine that takes 15min and I really wanted to wash my hair tonight because i’m seeing friends tomorrow ugh well i’ll skip it today or tomorrow night is the same i want her to rest» Sometimes it’s easy decisions that can be a little bit frustrating sometimes it’s really really big calculations with so many unpredictable variables that it gets exhausting. </span></p>
<p class=”p2″><span class=”s2″>One thing that really changed the whole dynamic for me is being my own employer. When I moved out, and I employed caregivers. Caregivers also came before at my parents house, but it was different they came in like a family setting, engaged with my family, helped us out, and often became family friends which is great and also happened really naturally, but i knew that when i started living alone things would be different and it was SO SCARY. This different came with more challenges but also took off a lot of the good old burden feeling. The relation employee-employer really relieved me of this feeling and this permanent overthinking. I found great people who work at my place, it’s their job, they have a job description, a manager, schedules, they are professional. They signed for it, they’re payed for it (sadly not enough) and they actually like what they’re doing also maybe because it’s only a job. Takes a lot of weight on all shoulders. It doesn’t mean that relationships are more easy to juggle, I mean I work in HR i know how difficult work relations can be and i’m always learning about how i can be better in this field and how complex it is. But it really allowed me to shift the dynamic from « a daily codependant relationship with my family filled with history, love, closeness that is not always easy» to « organizing my life how i want with always but different restrictions, in relationships that from their start are based on a work exchange » </span></p>
<p class=”p2″><span class=”s2″>Now when I see my parents it’s like my imaginary board i have is clean, the scores are empty, the equations and calculs have disapeared, but the close bond is still there.</span></p>
<p class=”p2″><span class=”s2″>I know i’m talking about one of the most challenging thing for us which is independant life and that it can be hard and long to build, i just wanted to share that this feeling of burden and codependancy is not written in stone forever and that even though we’ll always be dependant of others, the context of the relation can have a huge impact on it. I think i found a solution that gave me a sense of relief like i removed the weight i had myself attached to me, but to each their own. </span></p>
<p class=”p2″><span class=”s2″>But does the feeling of burden really disappear? I mean when I’m thinking 2sec about it my brain always find a way back to it. I’m no longer a burden right now for my parents but who will give them back the years spend existing around my care? Am I a burden for the state when they give me money to pay for my caregivers? When my friends lift my ice tea to help me drink?? ugh i should have lied and said i’m not thirsty. </span><span class=”s2″>I think the society programmed us to question the validity of our existence as disabled persons, a mix of the impact of capitalism and individualism i guess. </span></p>
<p class=”p2″><span class=”s2″>Anyway, I don’t think the solution is don’t rely on persons we love. Because whereas it’s going to the bathroom or helping with a homework or just listening, SMA or not we all rely and count on others. People are there for us but we are also there for them. We all give to others i think that sometimes we can forget this because we feel like all we do is asking.</span></p> -
Hey Brianna!
Great column as always, love reading you on mondays
I’ve also had problems with acne ( i think we’re the same age) and i’m currently doing a research to find the right pill ( i talked a bit about it in the subject i created about uterus problems) and one of my doctor told me that it will also really improve my acne, i’m starting a new one that apparently helps everyone with that so we’ll see if it is effective, hormones can be such a weird thing sometimes
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Hey!
I got 2 of my wisdom teeth removed 1 year ago. And I’m going to have the two last removed soon.
I really can’t open my mouth a lot, I think you can’t even put 2 fingers vertically. And the dentist didn’t have any problem removing them, she was pulling on the sides of the mouth and when I felt tired I made a sign and i could close a bit to get some rest. So no general anesthesia just a local one in the mouth for the pain, not really a surgery. Done in 20 min.
My doctor said if possible it’s better to get them removed fast because my mouth opening will not be improving and they can easily create problems. -
Hey everyone!
I also have a very small appetite, it’s always been like that and frankly it annoys me, not being able to finish a dish you really like or having peopke always notice how small you eat is a bit frustrating. I know sometimes SMA has side effects you don’t really expect and this appetite thing always intrigued me because i found it quite recurring in the people I met with our disease. So I’m not really sure of my information but here’s what I found out. One of my doctor told me that from what he noticed throughout his carreer working with SMA is that often either his patients had a very big appetit or either a very small and that there weren’t really like middle. But he couldn’t explain this phenomen and that’s just one doctor observation.
But then I read an article about the hormone called Leptine that is the hormone of satiety (not sure if you can say that in english sorry) but can also impact motor function. And a big % of SMA people have an amount of this hormone that is either very high or very low, not in a normal amount. I found it so interesting i asked my doctor to do a blood test on this hormone and the result indeed matches i have an excessive amount of Leptine. I did it one year ago and plan on doing it again in one year to see if it evolves. So maybe you can bring that hormone in the conversation with your doctor and see what he thinks of it. ( mine had never heard of it associated with SMA until i brought it up)