lindsay-russell
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So glad you went to the concert! My friend and I went to night 1 in Houston! I was able to get floor tickets and it was the most amazing experience ever!! My friend and I cried a little when she came out because of how close we were lol. That was my first big outing since the pandemic too. As far as anxiety, you just have to push through it! I think my mom was more worried that I would catch COVID than I was. Honestly, I have gotten all the covid-19 vaccinations and boosters that I felt safe enough. Anxiety is a hard thing to deal with, I had to take medication for almost a year in my last year of college to deal with the anxiety over exams and work, but you basically have to tell yourself that what you’re afraid of is nothing. My anxiety in college was that I was going to fail every assignment/exam even though I had a 4.0 since my very first semester. I had to tell myself that what I was worried about was not true and just nerves. Also, you don’t want to miss out on the exciting things and then regret it later. Basically you just have to weigh the pros and cons and take all the precautions that makes you comfortable.
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December 14th, 2022 made my 20th dose of Spinraza. August 2023 will make 6 years that I have been on treatment. Up until December, I have been getting my treatments cervically, but I now have a new radiologist who will only do it in the back. This past injection was challenging since I have rods in my back. I also had a lumber puncture headache for 6 days after my injection, which was horrible. I am sticking with Spinraza though because I have been told that within a year they are going to increase the medication to 50 mg. For about 3 years now, I have been dealing with my left arm being almost completely straight which Spinraza has caused. Because of this, I can barely use my left arm which has been mentally and physically challenging. My contractures are releasing in my arms and legs, mostly my arms, which I have been told Spinraza is not supposed to do that. Although I view this as a negative, Spinraza has given me big gains and has helped overall. I had thought about switching to Evrysdi a couple of times but after doing more research on it I decided not to.
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I was using that medication in the beginning for a while but unfortunately it stopped working for me.
Spinraza is definitely helping me so that’s why I’m still taking it even though it’s painful.
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Even with an ultrasound machine, they have a hard time drawing my blood. For this past injection, I drank liquid iv every day for 2 weeks straight and it still didn’t help. Basically a finger stick is the only way my blood will flow easily lol.
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Sorry for the late response! I haven’t been on here since I last posted until now. I ended up having my injection in October (2 months late), and I did have sedation. The sedation worked great and I didn’t feel the injection like I had been! I ended up having to have my iv in my thumb which was not fun lol. My problem is no matter how much I drink, they can’t get a vein to work. I’m having a catch up dose in January with sedation so I’m hoping this one goes smoother some how.
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Gorgeous dress!! All Too Well was so good! I’m so happy she did the 10 minute version of it. My friend and I were screaming the lyrics lol. Yes, the autumn leaves and snow confetti was the perfect touch!
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Yes I absolutely loved it! The best concert of hers that I’ve been to! It truly is an experience like no other! My outfit was based off Reputation. My favorite performance was Tolerate It and Don’t Blame Me/Look What You Made Me Do.
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Hi! Thanks for all the information and tips! We were thinking of renting the medical equipment I need but didn’t know if they had medical equipment stores like here in the US. That’s really cool that every cab is wheelchair accessible! It’s amazing to hear how so many different countries are far more accessible than here in the US. Wish that was available here.
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I do not. In my area of the state I live in, they are not that helpful so I haven’t gone that route.
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Right now I’m only looking for jobs where I can work from home, which apparently is really difficult to find lol.
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I’ve been searching indeed for remote jobs online but I’ve had no luck in that department. I’ve been looking into interior design, event planner, and travel agent. I really have no idea on what I want to do because I don’t know what I can do. I’m on medicaid and receive a waiver program in my state, and to keep all the services I can’t make more than a certain amount of money but I don’t know what that limit is because no one knows. For my dream job, I have no idea. I’m also interested in graphic design/social media.
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Yes it’s true. My family access manager told me this in December. They have been doing clinical trials for 50 mg for two years. My family access manager also told me that she heard in 2025 or 2026 our dosage could be 100 mg once a year. The 50 mg dosage would only be twice a year. I’ve never experienced the slump you’re talking about but I’ve had some injections where it didn’t really do anything.