Tag Archives: rheumatoid arthritis

Too Many Friends

Hello!

Now, judging by the title, it seems like this might be a little kvetching.  It’s not. I am a firm believer that you can never have too many friends.  I know I’m “that weird lady” and I gratefully accept the title, but I believe that we are all connected.  We are all the same.  Some have more, some have less, we all have struggles.  We all cry.

I try desperately hard to not let people who are painfully mean (and by painfully, it can get to where their negative energy can physically hurt if you stress too much on it… it’s the stress, not them particularly I think… but hurt is hurt).  And I let them anyway.  Sometimes it is unavoidable… you have to deal with them.  Sometimes I get caught in my Pollyanna ideals and try to help… to change… and it doesn’t work… but I try. It’s also why I don’t “hang out” in many of the RA groups on Facebook.  Debbie Downer isn’t me and it isn’t something I deal well with.  Yes it hurts… BELIEVE me I know it hurts.  But… there are people who find their joy in DWELLING in the hurt… expounding and bitching endlessly about the hurt… I hurt. Some days I hurt an 86.  And The sun is going to come up and I have to get through today.  I can smile (okay, it LOOKS like a smile if you grit your teeth the right way) or I can bitch.  Bitching pisses everyone off and adds to the stress.  Stress sucks.

Too often I find out that my friends for other reasons (people I’ve worked with… friends for other reason on Facebook… complete strangers) are struggling with trying to get a diagnosis for the pain… or have gotten the diagnosis for the pain and are struggling with the new reality.  It weighs on my heart that so many people are finding out that they are now dealing with this reality.

It’s funny.  The day I found out about my diagnosis I sat at my desk at work and cried and cried and cried.  I thought of the hands… the ones I remember from my childhood… the ones that terrified me then and still do now.

Don’t google them and look.  It’s not good.  It’s scary.  I know it is reality still.  I’ve seen them when I’m out and about.  But it doesn’t help to dwell.

I don’t want other people to sit at their desks and cry and cry and cry.  I know they will.  Even if you DESPERATELY want to know why you hurt like there is ground glass in your body and every movement grates it into the nerves… even if you NEED to know so you can start to fight back… still… hearing the words is like getting kicked in the knees.

I’m glad I went through my own steps of dealing with it so I can help.  I can be the go to guy who has lived.  Who has cried hot tears because some times you just have to push through the pain because you have to and that is the only reason you have.  But I can listen.  And I can be that shoulder, real or virtual, who understands…

Too many of my friends are hearing the same words I heard.  And it sucks.  And I hope that, maybe, I can help.

The Reaction

I know I’m guilty of it too, so let me start out by saying that I think this is just human nature and it doesn’t mean what it feels like it means when you are on the receiving end.

People hear (read, whatever) a comment you make about… seeing a Rheumatologist… or taking Methotrexate… or… whatever… and suddenly they get “that look” and they make “that comment”… oh, I hope you don’t have Rheumatoid Arthritis.

Of all the things I could have, I have to admit, RA wasn’t at the top of my list.  I probably would have picked something that sounded sexier, or that more people understood or could relate to, or that wouldn’t ever change the angles at which my fingers or toes pointed.  But I didn’t actually get a vote.  And frankly I don’t think I suck that bad at carrying on my life.  It could have been better, but it could have been worse.

I understand that people feel empatheticly bad that I have a forever condition that frequently hurts and that sometimes can knock the shit out of me and that might shorten my life and that (outside chance) could wind me up on disability some day.

It does suck that it hurts.  It way sucks that it makes me tired a lot.  Combine those two and it makes some days be way cranky days.

But don’t for one minute forget the fact that I do not let it get in my way.  When I’m not controlled, it has a huge impact on every day.  But I’m back to being controlled.  I’m back to taking Yoga (and starting to train for next year’s big races) and thinking about smaller races later this year.  I’m enjoying yard work (WITH my work gloves on, thank you very much).  I am back to writing for a contract.  I’m back to living my life.  Yeah, I have to be mindful and not stress too much and not work too much and to take time for myself, but I’m back to being me.

And today, I’m working from home (too many hours, I know… and I’m on pager duty so have to be “on line” till 8pm) with the windows wide open.  The birds are singing and the breeze is making my dozen or so wind chimes dance.  For a while, I worked from the front porch.

I was reminded this week that, there but for the grace of god go I by a friend I used to work with.  She is considering, very seriously planning on, applying to go on disability.  She is Sero-negative RA and has been fighting for a diagnosis for two or more years.  I understand why she would be thinking this way.  There are days that I am terrified of getting to that point.  So I fight.  I fight every day to stay ahead of my condition.  And I write, so other people know that they aren’t alone.  And I reach out to educate people, so maybe for some people, “the reaction” is more… Oh… that sucks… I’m sorry… Come on, let’s go have a cup of coffee (tea, ice tea, banana split…whatever).

it could be better.  But it could be worse.  Be gentle with yourself.  Know that there are thousands and thousands of us out here who have heard those words and we are more than willing to help you on your journey

Cha-Cha-Changes

So, I find myself sitting, early this Friday morning listening to Change of Heart  “at work” in my office at home at 5:30 am getting more done by 9 am (blah blah blah).  There is the sound of claws on laminate flooring as the dog chases, catches, and chews on the cat (I’m glad they love each other).  The window is open, a hawk cries just out of sight.  An owl alerts the world that it is morning.

I keep thinking about changes.  It’s been a third of a year now full of changes.

Not all of the changes have been easy.  I miss my little boy desperately.  Skype helps a lot and I bought a year’s paid subscription so I can call anywhere, even land lines, without having to worry about it.  Voxer helps too.  I still miss him.  I know he has his wings and that this is as it should be.  But still…

It was very hard leaving “home” to go on vacation (and to do the half) in Florida and getting on one plane while my family got on another plane and I never went back to Texas to say good-bye.  Watching them leave (their plane was an hour before mine, and I wasn’t allowed to check in until they were nearly ready to take off) through the airport while I sat waiting to check in will remain a very fresh and raw memory for me.

Not all of the changes were hard.

I love my new house.  It feels like a home in a way that the old house never quite did.  Maybe because here I have a room of my own that is all my own that I love.  Outside my window is a bird feeder that birds actually come to.  I have the window open this morning listening to the bird song from wherever they are.  There is a chilly breeze coming in and it’s wonderful.

I have a garden and flower beds that won’t require hundreds of dollars of water to keep looking like flower beds, and I’m making them my own.  I’ve adopted plants from the farm where I grew up.  I’ve adopted plants from the yard of the vacant house next door.  I’ve bought plants that I love (yay pussy willow bush), herbs and plants that hearken back to my childhood and my great grandmother’s house.  I still want a rose bush and a lilac bush.

My job is sometimes hectic and sometimes, frustrating sometimes, incredibly educational sometimes, but always something I enjoy doing and something I look forward to doing almost every day.

Oh come on, NO one loves their job every day.  Some days you just feel like shit and don’t want to deal with breathing or going to the bathroom let alone facing people or stress.  I’m glad that the days that I want to hide under the front porch are way fewer than the days when I actually enjoy going to work.

And looking at where I am now, I have to think that the best change is that my boss believes that I am capable now.  I thought I was going to work where I was forever because it was decent insurance and it was good pay.  It didn’t really matter that I was ridiculed all the time or that my boss outright told me that he didn’t think that I was capable of being a productive member of HIS team… or that I was deliberately set up to not possibly be able to reach the goals set.  Now I’m part of THE team and I am a productive member of the team.  And I realize that I can.  And knowing that I can, again, is one of the biggest changes.

I don’t always feel marvelous.  I am getting back to caring how I feel.  And I am starting to find peace in what I am and what I’m doing.  And the absolute best part is, the change in the weather seems to be agreeing with my RA.

 

Uncertainty

Let me start by saying that I hate paying $6 every time I have to go for an Orencia infusion. I know it is a little thing, but parking, in general, irritates me a lot. I also hate knowing that they bill almost 10,000 a month for my office call, chair rental, infusion center rental, soda crackers and cranberry juice. I’m REALLY counting on what the insurance company saying being true… that after I hit $3500 out of pocket, I won’t have to pay any more the rest of the year. Except for prescriptions, those come out of a different company and a different bucket (and SO don’t get me started there).
I don’t like knowing that the Intercontinental hotel is DIRECTLY attached to my clinic. That tells me that it is probably billing way more than is absolutely necessary.
All that said, I messaged my Dr through the online thing, and she called me back to talk. She asked that I call her, asked that I just stop in her office, asked that I call her to follow up and asked again today that I call her on Monday. This is a doctor that has crappy ratings in the rate your doctor thingys.
The place is expensive, but… She listens… I miss Dr Booth incredibly. I love her sense of humor and the fact that she always remembers everything about everyone in my family. But Dr Gota cares. She might not care the way other doctors show it… or the way some patients think she should, but she’s very matter of fact and to the point and she follows up. She uses the computer for her records and takes copious notes, but when it comes time to be poking and prodding, she does that just fine.
I don’t always like the look on her face. I certainly don’t always like being sent for x-rays and blood work. But we have ruled out that anything is broken and we know that I waited long enough for my diagnosis that I already have significant wearing in the joints. But we know. And knowing is half the battle.
I’m looking at being able, in the next couple months, to change to a more local (and a not pay to park) rheumy. But I’m not entirely sure that’s what I want. I don’t like the cost. I don’t like being slapped in the face with some of the reasons why the cost is what it is. But… I like her. I think I want to stay anyway.
The decisions that I know I have to make because I have to be comfortable with my care because it is for a long long time, but I have to think, too, about all of the cost… what to do, what to do…
That is part of my uncertainty today.

Turn RA Infusions into “Me Time!” – Rheumatoid Arthritis Treatment – Health Monitor

The article I was interviewed for about infusions and what I do on infusion days is now online!!! 🙂

Turn RA Infusions into “Me Time!” – Rheumatoid Arthritis Treatment – Health Monitor.

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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A Day to Smile

So, it was my Orencia infusion day.  It was the first one since training for the half started in earnest, and I wasn’t sure what to expect.  I didn’t run before I went for my infusion, I waited until lunch … Continue reading

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Because It Makes A Difference

So, I’m sitting here having a text message conversation with someone who I used to work with. She is 4 months down the “just diagnosed” trail. Prednisone for 4 months, MTX for 4 months. She just switched to my Rheumy … Continue reading

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On Crossing The Finish Line

This gallery contains 1 photos.

I watched a Run Disney video on YouTube this morning showing how people cross the finish line. There are so many reasons why people cross the way they do. It’s really neat to hear the stories about why they do … Continue reading

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Whining and Kvetching

I just had a nice little chat (is it called a chat if you are talking over text message?) with a friend of mine.  We used to work together and periodically we chat.  For the longest time (a couple years) … Continue reading