Tag Archives: rheumatoid arthritis

Brushing My Hair

20150314_141350As often as not, we of the great RA club, hands have issues.  Sometimes they hurt.  Sometimes they are just really tired, or have limited range of motion.  Regardless of why or what or how, hands tend to be a little more of an issue than some other pieces and parts.

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While being a part of the club also often means that (thanks often times to the drugs that work to keep the rampant inflammation in check) we might have thinning hair, it is important that we can work to maintain at least appearances the best we can.  You really do feel better if you can find a way to make yourself look a little more human.

Something I’ve always enjoyed doing is brushing my hair.  I also like brushing my kids’ hair but they are kind of getting old enough that they don’t need me to do that for them anymore.

I have discovered the usefulness of animal brushes.  Not all brushes are easy on my hands, but the ones that don’t actually have “normal” handles are much easier on my hands and wrists.  Some of them remind me a lot of the horse brushes we used to use to brush out the horses when I was growing up.  Those brushes are REALLY big, compared to a human head, but the idea is really neat.  You put your hand inside the strap and you don’t have to actually hold onto anything. The other alternative (the ones I found this morning that are a lot like the one that my daughter lost in Sequine when she went for drill team) has a kind of handle on the back of the brush that fits between two fingers on your hand and you don’t have to hold onto them at all.

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Granted, these brushes aren’t cheap.  The blue ones are <insert OOOOOOOOoooooo here> are Martha Stewart Pets brushes and are 13 dollars a piece at PetSmart.  The others are ConAir Pro Dog brushes. They are smaller and lighter and roughly half the price.

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There are several different styles, several different “tooth” styles that are effective on different styles of hair.  Today one I found was Boar Bristle (with Nylon) and it feels really comfortable.  One of the ConAir ones that I found today was just srpingy wire and I thought it was probably going to be too hard on my head.  I might be wrong, but I really didn’t want to take the chance.  I have a variety now, some I can just toss in my bag when I go to work or on a run.

While I do understand that there are people who have a very great aversion to combing their hair with a dog brush even if it has never been through a dog’s coat, I also know that I’m learning more and more that I need to not worry about what people think about what I do.

These brushes help even when I’m having big issues with my fingers.  I’ve used all of them today, to see the differences.  I’m glad I found them.  I’ve been looking for the replacement brushes since 2011 when my last one went missing.  They help.  And they are very much worth the money I spent to be able to comfortably brush my hair.

At least they are worth considering if you are willing to take the chance.

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Where did my week go?

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Sitting in front of my window watching out at the not quite yet winter storm round whatever round this is.  We are supposed to get half a foot of snow by tonight.  Should be interesting.  I plan on surprising the … Continue reading

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Freaking Cold

So… today I go back to work.  A week of vacation and a day of work from home and today I go back.  It’s going to be -1 when I start my mile walk from my parking lot to work.  I’m … Continue reading

Quiet Sunday Morning… T minus 33 hours

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It’s Sunday morning.  Valentines Day dinner was spent in the cafeteria of the hospital where my little girl is spending some time.  Corn Chowder and diet ginger ale.  Festive.  The hospital doesn’t have anything in the cafeteria but fruit juice that isn’t diet.  Fortunately, the gift shop has regular pop and it’s only $1.70.  It gets warm in the locker, but by end of visiting hours, the gift shop is closed and there is NOTHING around the hospital where you can buy food or gas or pop… or coffee.

Yesterday, the drive there was incredibly snowy.  The Ohio turnpike was closed.  There were wrecks everywhere.  We drove through very nearly white-out conditions.  I’m glad we went.  We brought books that she wanted to read and work through, and clean clothes.  We were very nearly the only visitors there.

Today it is less snowy, less windy, but way way colder.  The trip will be less scary, I think.  And now we know where to park.

Today marks the official end of my week off.  I’m not entirely sure where it went.  i got a good bit accomplished, but I have so much more I wanted to get done around the house.  I will have to make a more concerted effort at doing it in smaller bites rather than trying to tackle everything at once.  I do know that I OVER did it several times and my body protested loudly.

Nine weeks (almost ten) is too long to go between Orencia infusions.

Cold doesn’t seem to bother me nearly as much as heat and humidity did.

Stress wreaks havoc on my body.

Pain makes me extremely bitchy.

Stress wreaks havoc on my body… (it was worth repeating).

One cup of Sheetz mocha and two cups of regular coffee (one chocolate creamer, one regular half and half) all mixed together make a wonderful way to wake up on Sunday morning.

The Artist’s Way by Julia Cameron is an incredibly good book that Squirrel Girl and I are both working our way through.  Me, through the electronic version, her through the paperback version we bought her yesterday.  I need to focus on my dreams as well as what puts food on the table and trying to be the duct tape that keeps everyone together.  The latter is far more exhausting than any of the former put together.

My knuckles scream… all of them… everywhere.  My ankles… my back… breathing aches my lungs (who knew that aches could be a verb).

I stopped my prednisone almost a week ago… just like the doctor said.  I’m living on naproxen and sheer grit.  I have to make it thirty-three more hours.  in thirty-three more hours, I get my infusion. I don’t care how sick I feel, I will not admit to anything other than the pain to my Rheumy’s PA.  I will get my infusion tomorrow… and afterwards, I will go to visit my squirrel again.

Listening to audio books chases the way too quiet away.  The boys sleep late.  The dog hunts the missing squirrel girl and lays at my feet.  I’ve been posting on my facebook vanity page.  I wonder if I can fix where these post…

It’s time to face the day…

 

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On Finding Thursday’s Normal

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Thursday is 9 degrees of sparkle on snow, a fullish moon, pictures through icicles, chocolate raspberry truffle coffee, 20 milligrams of prednisone and 1000 milligrams of napproxin (yes, I know that is too many) and it is one day closer … Continue reading

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Morning in week 6

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So, here I am… it’s quiet and it’s dark and inside I’m screaming.  I’m tired and I hurt. This morning I caved and decided to take napproxin.  I have been gritting my teeth for days and I’m getting to where … Continue reading

RA Reminds us that it’s there

I’m sitting looking out over the snow in my yard.  There is a woodpecker munching on my suet feeder.  There are chickadees and titmouses (titmice?) grabbing some of the sunflower seeds from the clear plastic feeder that is stuck to my window.  The squirrels are, apparently, huddled in their nests somewhere because they really haven’t been making much of an appearance this morning, yet.  It’s really a pretty morning.

I’ve been fighting hard to get completely over the flu from December when… WHAM… Bronchitis from January derails any hope of my January infusion being on time, if happening at all.  The antibiotics aren’t really helping an awful lot.  My infusion is a week late now… my MTX has been put off for at least last week and this week and probably next week.

This morning, the stress of 70 hour weeks and forgetting to go pee, let alone eat and putting sleep off in the interest of “Git ‘er done” has all contributed, this morning, to my fingers and wrists screaming about whatever has been going on in my body.

Stress is really kicking my behind.

I try not to.  Honestly I do.  I try meditation.  I try not bath.  I try walking.  I  put bird feed into the big giant bird feeder out front, and I kind of melted down in the kitchen on the floor because I could not make my hands get the roof back on the bird feeder.

Stress is RA’s evil insidious little friend… and just when you think it’s safe to take a breath, something happens and your body rebels.  Stopping the drugs that make your immune system dumbed down so your body can heal from the sick just pisses off the rest of the immune system and WHAM… it comes screaming back to remind you that it is SO there.

Prednisone… I’m turning to you again… not a huge dose, but one that I really really didn’t want to have to start taking.

Reality Bytes

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My second week post-op work from home is quickly coming to an end. Tuesday I saw my surgeon and he released me to go back to work on Monday. By Christmas I will be allowed to lift more than 10 pounds. I have a 22 pound turkey to make for Thanksgiving. This may be interesting.

I’m nearly to the end of my Red and Green and White paper chain scarf. It’s long enough to wear, but I would like another three or four links before it’s long enough for me to really like it. I wore it to my infusion yesterday and I got compliments on it! In my head, they were just being polite, but I accepted them. They made me smile.

When I was going to the infusion center on main campus, it was located right outside the Rheumatology department. I don’t know if that was by design or accidentally. But that’s where it was. It was just there. Safe. Kind of sterile to look at. Technologically awesome. Great people. But it was by the Rheumy’s office.

It’s easy to kid yourself about the infusion center when it’s where you can connect it to your illusions. The curtains create individual little rooms where you can hide with your infusion, enjoy some juice and crackers with the poison of your (your doctor’s) choice. Very illusion inducing. You’re just there and while there are people also there, they are just there too.

Yesterday, going to my new infusion center, my reality caught up to me.

The man next to me was having issues with his chemotherapy and was trying to decide if it was time to have a port put in to make his infusions easier to deal with. Fewer pokes and sticks. His wife was busy looking up the alternatives (gotta love smart phones), which ports would be most effective and most comfortable for him.

The woman in the chair on the other side of me was getting her poison with blood. She had a lot of trouble with her IV and they had to call in one of the surgical nurses to run hers. Hers was very painful. I tried to distract her while they were getting her set up. Her partner took their little girls for a walk so they didn’t have to watch. She is tied to her chair for two hours ever three months.

The woman with the awesome piercings across the room was there for about the same amount of time as me. She was neat. I hope she’s there again. I would like to get to know her.

On the counter under the TV there was a pile of neck pillows that someone had home-made and dropped off. There is a box of Teddygrams and a box of soda crackers. There is a fridge full of juices and Gatorade and diet soda. There is a box full of hats and scarves that people have made and dropped off. Most were fleece. One hat was crocheted in the most interesting colors. It called to me from across the room. It became mine. The pattern makes the colors look like puzzle pieces.

Reality, yesterday some, more this morning, kind of snuck up on me and took my breath away. I KNOW all about the drugs I take. I know what they are for. I know what they do. I know that without them life gets to be really nasty for me.

I don’t feel so alone somehow having sat through everyone else’s reality.  I’m really glad I switched.  I feel, somehow, more like I’m part of some weird ass community.

Sometimes, though, realizing that I will be going there probably for the rest of my life to poison my body… that I will be taking my chemotherapy drugs forever… that I will be tricking my body into behaving nearly the way that normal people’s bodies behave… it all caught up to me. I can’t say that I have cancer, because for me it’s not cancer, but I have to let places know that I’m taking chemotherapy drugs because they are what they are.

The hat came home with me. It’s a little scratchy… the yarn is kind of stiff. I’m going to try fabric softener… It wanted to come home with me to remind me of my reality. This morning I’m enjoying coffee and I’m thinking I might take a break from my computer to go take a long hot bath.

I am glad that I’m not yet to the point where I scare people with the way my hands look. I’m glad that I ‘only’ hurt as much as I hurt. Mostly I’m glad that I learned that I need to treasure every second because you never know when it will be your last.

30 Day Chronic Illness Challenge: Day 6… If you could have told yourself something when you first remember these symptoms, what would you have said?

What would I have told myself? Don’t listen to what anyone says. You know your body. It is your body. Get you behind end to the doctor and find out what is going on. It isn’t normal for a Disney freak to be so willing to go back to the hotel at 5 pm every day. It’s not normal to take thirty minutes to walk into the hotel from the parking lot… all alone… looking for puddles to try to soak your feet just to make it another 20 feet.

Don’t be scared. Don’t listen to what anyone says. You need to take care of yourself or you won’t be around to take care of everyone else.
30 day RA information challenge

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30 Day Chronic Illness Challenge… Day 4… How did family and friends react to “it”

So… I’m trying to figure out the “it” that people are reacting to.  My diagnosis… my situation… my life… This one is kind of tough.  I’m sitting in the chilly (it was in the 40s Fahrenheit this morning) foggy morning … Continue reading