rachel-markley
Forum Replies Created
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Following! None I know are active.
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I also feel the same and it’s stressing me out because I work in a hospital and need to go back in soon! I have no solutions though 🙁
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Doing things alone – i.e. shower, bathroom, eating, etc.
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Mine is Wednesday and only my second maintenance dose but I seem to slump around week 12 as well and by this last week I can hardly function 🙁
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Yay!!!!! You will need to purchase your own supplies and try to determine what kind of setup you’ll use on your chair (if you’re using a bag). I’ll send you my supply list!
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I got my SPC in October but started the process in May. I was advised by 2 urologists not to do it because “my bladder was in “perfect working order”. I ended up going back to my first urologist and had a piece of paper full of a list of reasons why it was beneficial to my health and well-being and after that she didn’t really argue and ended up fully supporting my decision. I had another brief argument with the anesthesiologist on the day of surgery because I didn’t want to go under (my uro actually encouraged me to go with moderate sedation which I agreed with). Once he spoke with uro and she agreed to numb my bladder and the skin, he was fine.
The only thing I would recommend is not getting Botox if they recommend it. It caused some general weakness with me. That being said, 4 months in, it is hands down the 2nd best decision (1st being trach) I’ve ever made. I feel better, less dry skin and constipation, I can go out and about all day like a normal adult, and I have WAY less anxiety. I honestly didn’t know how much I was obsessing over using the bathroom.
I had a friend on speed dial (well text) the first 2 weeks because I had a lot of questions. I’m happy to give you my number if you’d like it!
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Gas is a totally different drug and your body will respond very differently. I don’t do well with gas either!
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So easy! I think I’ve had it twice but the one I was old enough to remember (SPC in October) felt just like a regular surgery but I didn’t go to sleep scared to death of complications. I don’t remember a thing from the second they gave me drugs in pre-op to when I woke up. It was certainly easier to wake up from and I had zero complications. Also, get the SPC!
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I’ve had it 3 months. I used to have a G-tube that I hated as well and my SPC is waaaaay less annoying! The surgery was seriously so easy as I only did twilight. It’s worth everything because of how much better I feel.
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Hi DeAnn! I LOVE my SPC! I’m happy to discuss but it’s way too much for a post. If you have specific questions or want to meet, I’m happy to!
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I personally have never missed anything because of cold and flu season. Most people know to miss out if they’re sick and I’m in attendance and I have always felt I have to trust them. To me, being out and about is more important and I’m willing to take the risk. I mean, I work at a hospital, I know all about risks 🙂
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I don’t have a ton of questions – mostly cost, insurance approval, and drug interactions. And taste lol! Anything that avoids the words spine and needle in the same sentence and I’m down.
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My winter doesn’t really change except on the weekends. I still have to work everyday but I the weekends I hibernate and mostly read or play computer games.
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First off, I LOOOVE that show and think it’s highly underrated! Secondly, there are several children in my extended family that lived until age 1-2. Based on what family remembered, they more than likely had SMA but it would be cool to know for sure.
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Work is a huge part of my daily motivation. It is hard to overcome the fatigue and the general challenges associated with navigating SMA and work (EX: a 2.5 hour wheelchair clinic this morning), but 98% of the time it’s worth it!
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I had the start of one with my last dose. I drank a medium Mt Dew freeze from Taco Bell (recommendation from Biogen FAM) and it went away!
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Literally me staring at my dinner last night while my parents heated their dinner, fed the dog, heated up the oven…
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It made me wish I’d chosen a career where I could make more money haha. No really it motivated me to just go do it and make the first move!
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Hey Ryan! My OT was looking into this for me. If you find out cost can you let me know please?
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Kevin, I have that too but struggle to use the average #2 pencil. Do they allow you to move your paper?
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Your virgin pregnancy comment made me laugh as I say essentially the same thing for every blog post I write after an injection! The crazy long days are the worst part for me and are made worse because of the fact that I work at the hospital where I’m dosed. I’m requesting for my first maintenance dose that I be allowed to get my IV early and go back later for the procedure.
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All the time and it’s so frustrating! I have this most with clinics and DME companies but the other day it took 2 full days for me to get an antibiotic because of communication errors.
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Kevin, I can move my left big toe! And my left arm contracture went from -40 to -20. Dose #5 is on the 13th!
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DeAnn, that’s why my OT and I decided not to demo. She was afraid if I demoed and it even remotely worked, insurance would go for it versus Jaco and Jaco would allow me to do way more.