New Years and Neuro

dec31 004My New Years was nice and relaxing!  I did nothing lol.  I sat on my sofa watching movies and reading, with Zeus snuggled beside me sleeping until I became close to midnight, and I turned on one of the TV stations for the last bit of it.

Zeus is now 11.  I got him just after I turned 19.  A lot has happened in the past 11 years, and even though I was at the end of my teens when I got him, I feel like I basically grew up with him, since that’s when my life seemed to finally start!

I went with my counselor Susan to the Neurologist on Friday for check up to see how I’ve been doing.  He had me do the poor man’s tilt table test, by laying on the bed for 5 min.s, checking vitals, then standing for 5-10min.s and doing the same.  Even though I felt like complete trash standing, my blood pressure and heart rate never changed once!

dec31 005So now he says I am not even considered a POTS patient anymore.  With the help of my heart medicine of course.  Unfortunately though, my nervous system is still making me feel all the same symptoms, bc it doesn’t know any better, than to freak out when I change body positions, etc.  So it just goes with what it knows, and makes me feel terrible.  The goal now, is to slowly, slowly, way too slowly, build myself back up, and convince my nervous system that it’s okay for me to do normal daily things.  So far I’ve been pushing it too much and having it freak out at me bc it’s not used to me doing things like… taking four days to shovel a driveway, etc. LOL.  I need to learn to slow down.  Hard though, when even when I am pushing myself too much, I’m still no where near doing things like a normal non Potsy does.  How to know your limits?

This is great news, but this will also take years to come by probably.  The next thing the Neuro wants to do, is put me on nervous system friendly med.s  Like my depression pills, etc.  My Crohn’s pills can’t really be changed too much, bc there’s not a whole lot of options out there, but try to find ways for the med.s I do need to be on long term, to not be ones that cause POTS like symptoms, etc.

One wonderful thing happened this week as well.  My friend Steve, learned about the Spoon Theory (link to the right of the page) from a friend, and went out a bought me a really cool, pretty spoon necklace with the awareness colors for Crohn’s Disease and POTS.  I teared up when I got it!  And I don’t get mushy over presents or things like that, but this meant so much to me bc it showed a good friend who actually tried to understand what I have to deal with, and wanted to in their own way, give me something that shows they care.  An extra spoon is ALWAYS needed 🙂

Jan5 008I also finished knitting my first pair of wrist warmers.  I am going to be making a pair for Amanda too, and she came by yesterday to pick out her wool for a new scarf I am going to try to knit.  Just a pretty, lacy looking scarf that’s still warm.  I am going to ATTEMPT my first toque afterward too and see if I can do it.  I just need the right circular needles for it.  I am also working on a present for my oldest niece Jessica’s baby.  The baby isn’t born yet, so I still have some time there!

Jan5 002I was really bummed out today, bc I wanted to be all feel good independent woman (roar) and take the bus to get the new Batman and Avenger movies, and then I ended up stuck in bed until almost 4pm too dizzy to even get out of bed.  My mom offered to take me there soon since my Grams has to return some stuff there.  Very sweet of them.  I’m happy to get the movies, just bummed I wasn’t well enough to do it myself.

Hope so far this New Year is doing you all well, and will reply to comments from before tomorrow, since obviously today has not been going as planned!

Ash,

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2 thoughts on “New Years and Neuro

  1. I read this last night and was so overwhelmed I couldn’t even respond. I admit I was super curious by this spoon necklace having so much meaning, so I went and read the article. It is amazing. Just wow, I absolutely love it and want to link to it on facebook sometime. Makes me oddly more thrilled about a purchase I made during that art show in November: two large chiseled wooden spoons. I couldn’t tell you why I decided I needed two, now I guess it was to have one in reserve. I love it. I also love that your friend Steve made such an understanding gesture with that necklace. That’s a pretty amazing friend. Post pics of the necklace soon!

    I can’t begin to tell you how happy I am about your slow and steady recovery! Getting to see such progress and have the doctor point it out to you. It must be so inspiring. You WILL get there, now for the patience.

    The wrist warmers look awesome, great idea too! I wonder if I could learn to do something like that. Do they have separate finger holes, or just one large hole for all four fingers? I have such poor circulation, it’d be a neat project to see if it would help when painting or typing on cold days.

    You might not have been able to get the movies this time, but I know it won’t be long before you build yourself up to being able. Baby steps 😉 There will always be bad days, but the good will outweigh them! Glad you and Zeus had a relaxing New Year’s! All the best! ❤

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