Category Archives: Raynaud’s Syndrome

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30 Day Chronic Illness Challenge… Day 1… My Introduction

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So… I did my RA introduction a few days ago. It’s been a REALLY long week this week and I’m feeling it this morning… so I thought I would sit down, slow down, and catch up with myself. So here … Continue reading

Socks: a retrospective

It’s scary how much time I end up spending thinking about some things since my RA diagnosis. I know that, along with my RA came Raynauds as a secondary condition and that is a huge contributing factor to the fact that my fingers and toes are always cold. But it still strikes me as odd to think so much about socks.

When they clearance the winter stuff and the “spring line” starts to come out at the stores, I always go looking for wool socks. I don’t just wear them in winter. I sometimes wear the pretty socks or the business socks in my drawer, but I’ve fortunately acquired enough wool socks in enough colors that I can rely on them to get me through on days when I know I’m feeling cold. And AC can make my feet and fingers freezing so it is as many days as not.

I recently discovered wool and silk blends and got a couple pairs of them that I absolutely love. They are soft and warm and stay up! Staying up is a problem I always have when I buy the 6 or 8 or 10 packs of athletic socks at WalMart. After a couple washings they start to fall down around my ankles, and they are knee socks or at least over the calf socks. I hate the feeling of them slid down. And that feeling is so not like just buying and wearing ankle socks. It just feels wrong.

This morning I put on the no slip hospital socks that bear got when he had his colonoscopy. They didn’t actually make him put them on and he wasn’t going to bring them home because they are just funky. No slip grippy stuff all the way around and tube socks. They are pukey brown and have an idiot smiley face staring out of two opposing sides. Who thought these up? Because having your feet smiling up at you when you are in the hospital is going to make you feel so much better? But socks are socks and they came home with me. And this morning they are keeping the chilly off my feet.

Who thought up putting registers on the wall to blow on your feet? In the summer, the AC is just too cold on your feet, and in the winter you want to be warm all over not just on the floor. I know I know, hot air rises, but it still feels counter intuitive. I was raised in a house with a coal furnace. Registers go in the floor blowing straight up… all the better to dry your hair in five minutes first thing on a snowy morning!

But I digress…

If you tend to have cold extremities, you know how important it is to find the warm. I love my Injinis toe socks especially in my Vibrams five fingers shoes (Go Hobbit Feet!!!) and the wool toe socks that I bought last fall are still holding up remarkably well. No holes. Still going warm.

I don’t understand why the 6-8-10 pairs that you get at back to school time don’t hold up any better than they do. I mean, I get planned obsolescence, but geeze… it just makes me want to not buy them at all.

I get that socks are a fashion statement and everything.  And I get that companies have to make money.  But I would far and away rather buy something that is going to keep me warm (which I think is what they are supposed to do anyway) and hold up without my having to add in elastic later than to just buy the cutsey or the garbage.

I can’t wait till gloves start showing up at the store (any day now). Since texting has become a big deal for everyone, and the gloves to facilitate have too, I can now use gloves with fingers all day long on my laptop! Technology is starting to catch up with what I’ve needed for years.

I wonder what colors this season brings!

It’s the best of times, it’s the worst of times

I love fall.  Even in a place where there really isn’t any fall, I love fall.  The low last night was 47 degrees.  The windows are wide open (the cat is deliriously happy) and the sounds of the night are creeping into the house.  The smell of the rain creeps in with it. The wind makes ghosts of the curtains.  And, when dawn comes, the feel of being outside in weather that doesn’t stifle every breath is amazing.

And I’m sitting here working, feverishly, to finish a pair of wool arm warmers that will come down over the ends of my fingers if necessary while warming my fingers (raynauds… gotta love it) with HotHands hand warmers.  I’m thinking that it might not be a bad idea to go soak my hands in hot water.  Sometimes (like this morning) I think longingly of one of those amazing hot wax baths that you can use to ease the pain.

This is the time of year that speaks to my heart.  And reminds me that I’m not the person I used to be when I was jumping into leaves and raking leaves for my kids to jump in.  Now I fight back the cold that settles into my hands and feet and fight to really enjoy the day, every day.

Coffee cups double (only double… the coffee is always what matters most) as hand warmers.  Wool socks over warmed feet hold in the heat most of the day.  And I stock up on these handy dandy hand warmers to help when other things don’t.

It’s fall, creeping quickly up on winter.  Enjoy the beauty of the season!

 

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Cold Front Friday

So… it was 91 degrees Fahrenheit yesterday. That’s about 33 Celsius if anyone  reads this who lives in a place where that is more common (as in ANYWHERE but in the US… ). About 9 last night a cold front went through.  Windy and … Continue reading

EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.

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What RA is like

This was posted in a group I’m on on facebook.  I went hunting and found it here as well (and found out that it can be shared with attribution)   What RA Is Like: A Letter For Family and Friends … Continue reading

Feet Feet Feet (and fingers)

I’ve decided that I hate Raynauds even more than it’s achey painfully cousin RA.  Why?  My feet are cold.  All the damn time.  Not really cold to the touch (although that too pretty often) but they are freezing.  They are so cold it aches.  My fingers ache clean up past my wrists.

I have fallen in love with my daughter’s heating pad for her back.  Last night I curled up under a quilt, a warm heavy fuzzy blanket and a comforter and I could not get my toes (clear up to the middle of my feet…. toes) warm no matter what I did.  I put that heavenly heating pad on top of the heavy blanket and in 20 min my feet were finally warm.

This morning, they were freezing again… hot bath… a soak in a HOT bath tub… and they were warm.  The day warmed up enough that heavy socks and wooly crocks are keeping my tootsies warm… but I know it will end.

It’s depressing to know that this is how it is going to be.  I can’t ‘fix’ it I can just deal with it.  I’ve given up trying to put on a front, when my hands are cold, I wear my cut off finger glovies and I make the best of how they look.  I wear warm socks even in my Vebrams and I deal.  I hate it, but it is what it is.

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I’ve been SO Stupid

be forewarned… this is a rant. I posted “my story” with my numbers today on facebook.  I have some amazingly supportive friends.  I didn’t actually anticipate the push back I got on my story.  BUT I was surprised. I posted … Continue reading

A New Tomorrow

At the risk of sounding like someone added something REALLY good to my Methotrexate I’m starting to think that there may be some very interesting mixed blessings that came along with my new reality.

Dealing with all of the interesting-ness that has been my life and the lives of my family… it has me started thinking more and more about what I love to do, what I have always loved to do… what I have always been very discouraged from doing. What I have been made fun of for doing.  What I’ve been encouraged by teachers to do but only teachers (who obviously know NOTHING anyway or they wouldn’t be teaching… except the one who encouraged me the most is actually following his dream too… just also putting food on the table at the same time)…

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The Phoenix lives for 500 to 1000 years depending on what legend you read. Once that time is over, it builds its own funeral pyre, throws itself into the flames and as it dies, it is reborn anew, rising from the ashes to live another 500 to 1000 years.

Now… I think a lot about me, and who I am and what I want my kids to know they can do and how to live my dreams.  I feel like I have been through several lifetimes, if the 1000 years is only figurative.

I think my RA/Sjögren’s/Raynauds diagnoses helped me build my latest pyre.  The fire is taking a pretty good chunk of time, but slowly I’m climbing out of the ashes and learning to be me.  I’m learning that I may really have talent.  I’m learning that you are never too old to learn to take wing and fly.  I’m learning that dreams are dreams and they may evolve, they make slumber, but they are always there.

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Fashionista…

For anyone who has ever met me… or frankly seen me anywhere at all… it is obvious that I am not a fashionista.  I could honestly give a rat’s behind what people think of how I look.  I can’t find … Continue reading