Struggling Snowflakes

20161124_124600_resizedI made this table runner for my own table.  I usually don’t make much for myself, but it seems odd to be a quilter and not have quilted stuff all over your house.  It is an interesting batik and I was not appalled at my quilting this time.   When I did the quilting, I was sort of thinking/going for snow drifts.  It came out all right.

The snowflakes are not struggling.  I am guilty of that.  Basically I have been feeling like crap and am sick of it.  I have two conditions that are currently competing with each other in my body.  For years I have had something called Dopa Responsive Dystonia.  For me, it basically means that I have the worst Charlie horses all over my body.  Medication had solved about 90% of it until the Rheumatoid arthritis reared its ugly head.  So the drugs for that cause the dystonia to be a zillion times worse.  Like I actually have cramps in my jaw (awful) and my tongue (imagine how that looks and sounds when talking).  I spend a lot of my free time at work, hoping no one notices that occasionally my arm shoots across the table without warning and begins contorting, which often causes tears to run down my face.  They attempt to solve this with powerful anti-seizure drugs that I don’t want to take because they can be very addictive and when you have to take them around the clock.  It makes a person wonder.  Then there are the two doctors, the rheumatologist and the neurologist, who don’t really want to talk to each other, they just want to prescribe more drugs.   Yesterday I was at the neurologist and pretty much begged him to talk to the Rheumatologist.  Just got a dumbfounded look and an offer to write him a letter.  Really?

Actually discussed with Kevin last night if I should just stop taking everything, because I am not sure much is helping.  If you want the Rheumatoid to be better you have to screw with the dystonia drugs.  It is a no win.  My only saving grace is the inexpensive hot tub Kevin put in the garage for me.  It is really the only thing that helps. I find myself in it 2-3 times a day.

I know I should just stop feeling sorry for myself.  I just don’t want to always feel like crap.  On a positive note, my daughter Miranda is doing well after the accident.  Working on therapy.

Happy Sewing

Happy Quilting

Treasure your Family

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27 thoughts on “Struggling Snowflakes”

  4. I’m sorry you are not feeling well. But I am happy to hear about your daughter. Doctors can certainly be challenging. I like the idea of stopping everything, then sorting it back out. Peace.

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  5. Glad you made yourself this lovely tablerunner! Dystonia is not a nice thing to have at all!! Then RA on top of that… bless your heart, I’m sending a hug!! What a blessing it is you have that hot tub. :)) my handicap daughter goes without the drugs ,a wise doc told us if it was his daughter he wouldn’t because of drugs killing her kidneys. I do give her Motrin or Tylenol if she is in pain so she’s comfortable. She’s lived longer than the docs ever thought she would, and still going. 🙂

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      1. I agree – I would wean yourself off everything you can and see if you feel worse. If you don’t, then there’s your answer. I find I cannot tolerate drugs very well. Even Nyquil will work the first night or 2 – but by the 3rd night I can’t sleep at all. – And that’s an over -the -counter drug. I don’t think these things affect everyone the same way. It’s up to us to figure out our own selves. Don’t feel bad about wanting to feel good. It’s worth the complaining and the struggle and the effort. Keep at it!

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  7. You have been through so much and so continuously! Your poor body is probably trying its best to handle everything but it just can’t. Be as kind to yourself as you can. Can you let people at work know you have some health conditions going on, or would that news not be accepted there?

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  9. Really sorry to hear you’re going through this. My mother ended up on loads of ‘competing’ medications a few years ago and a Dr eventually took her off the lot and then added what she actually needed one by one. It worked for her …

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  10. What hard choices! I don’t suppose there are doctors who are generalists any more and work with all the systems, but I can’t believe they won’t even TALK to each other! That’s negligence to my mind. Do no harm, and they ARE doing harm.

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  12. Well, at least your table runner came out well, even if you have many “challenges”. I read somewhere that patients who advocate for themselves get better treatment, even if they annoy their doctors a little😬

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  13. Hi, Lori. I’ve just been reading your blog. I got the chills when reading about your Miranda, but very happy to see her smiling face and that she passed out Halloween candy. 🙂 I love your great uncle Donald’s quilt! I can picture them sitting around the fire with needles in hand, chatting and completing the very projects you show. I love that. So glad you received the quilt. I have blocks my great grandma made that I’ve used in a couple projects. Very similar fabrics. I’ll be back to look at more of your work. Thank you for the follow as well. 🙂

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