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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.


  • This topic has 13 replies, 4 voices, and was last updated 1 day, 11 hours ago by Kelly Miller.

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      • #21703
        Brianna Albers
        Keymaster

        I have myriad allergies — cats, pollen galore, even egg whites. (I still eat omelets, though, because I don’t like being told what to do, I guess?) I used to struggle with itchy skin, but it seems that my suffering has moved on to constant congestion, even in the dead of winter.

        I’ve tried everything. Allergy shots, nasal spray, every antihistamine on the market. I even clear my nose out in the mornings with my Cough Assist. Right now, I’m taking cetirizine twice a day, nasal spray twice a day, OTC Claritin once a day, and allergy shots, but I’m still so stuffed up. No other symptoms, so I don’t think it’s a cold or anything. Sudafed gives me relief, but only for a day or so.

        Any ideas?

      • #21713
        Alyssa Silva
        Keymaster

        When you say nasal sprays, have you tried afrin? You can only take it twice a day for three days, but it works wonders on me.

        Also, cough assist for nasal congestion?! How does that work??

      • #21720
        Kelly Miller
        Participant

        I was wondering also how the cough assist helps with your nose stuffiness. Do you have congestion in your chest also or is it just in your nose?

        I use Flonase, and it’s been the best ever when my nose is the problem. I also have used Mucinex which seems to work wonders. It sounds like you are taking a lot of meds, so maybe increasing them isn’t the route to go. When did you last have an allergy test? All of our bodies change thru the yrs. – our taste buds, what smells hit us hard, things that make us itch – and maybe what used to work for you doesn’t anymore.

      • #21722
        DeAnn R
        Keymaster

        I could be way off base here, but figured I’d throw it out there.  I don’t recall if you have a feeding tube or not.  When my swallow muscles weakened I learned that sometimes when I swallowed it would push stuff up instead if down like it’s supposed to.  It actually explained a lot of my mysterious congestion.  When I got my feeding tube it cleared a lot of it up.  I still cheat with food, but now if I get some of the stuffiness or a rattle for no reason I know why.

      • #21825
        Brianna Albers
        Keymaster

        I haven’t! I have a prescription for it, but I’m a little nervous because my allergist said it has a terrible aftertaste. What do you think of it?

        I basically use the Cough Assist to blow my nose. I blow out during the exhale.

      • #21826
        Brianna Albers
        Keymaster

        Just my nose! I have some chest rattles but my treatments usually take care of it.

        I love Sudafed but it hits me super hard. Plus, it only seems to last for a few days. I had my allergies tested recently – 2015, I think?

      • #21827
        Brianna Albers
        Keymaster

        Huh! I’ve never heard of that. I got my feeding tube in 2011 and have never once regretted it, but it doesn’t seem to have any effect on my allergies.

      • #21836
        Kelly Miller
        Participant

        I’m not sure what you were referring to that you have a prescription for. Was it Flonase? I don’t feel like it has any more of an aftertaste than any of the others. Honestly, I feel like it works way better than any other brand. I swear by it!

        When I did have major problems with allergies, it was always in Sep. & Jan. That’s when I would get congested both in my nose & chest. Ended up with pneumonia a good amount of time until I got my feeding tube. Drs said it was aspirating, but that didn’t make sense to me since it was like clockwork in those months. Once I got the feeding tube, I was better able to take meds, and I stayed hydrated so much better. I think that really did it – the higher intake of just plain water to loosen everything up.

      • #21917
        Brianna Albers
        Keymaster

        I do need to hydrate more! It’s just so hard when increased water means bathroom difficulties.

        Oh, and I was referring to Afrin! My replies got mixed up – that was in response to Alyssa’s comment.

      • #21922
        Alyssa Silva
        Keymaster

        Oh sorry Brianna! I didn’t realize you were responding to me with that comment. Afrin is typically OTC. Not sure if it varies by state or pharmacy, but I always just pick it up at CVS. I know your humidifier is working well but for those extra tough days, Afrin may provide some additional relief.

      • #21925
        Kelly Miller
        Participant

        Brianna, please don’t think I’m trying to push you into something, but… Have you thought about getting a SPC? It would totally alleviate the worries about having to go to the bathroom and does allow you to hydrate like crazy. Again, just a thought. I had no idea what one was until someone suggested it to me in a forum, and I’m eternally grateful to them for doing that. My life has been so much better healthwise since I got my SPC & my feeding tube, so I just suggest it to everyone just in case they hadn’t thought about it.

      • #22004
        Brianna Albers
        Keymaster

        What do you mean by SPC, Kelly?

      • #22005
        Kelly Miller
        Participant

        That’s a suprapubic catheter. Are you familiar with those?

      • #22009
        Kelly Miller
        Participant

        Brianna, check out the post just recently by DeAnn regarding SPC’s!

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