Category Archives: rheumatoid arthritis

Long Hard Month

Posted on March 3, 2014 | Leave a comment

So… we are in the new house and it is starting to feel like home.  I still have a good bit of cleaning to do, but it is feeling much more like we live here and not we have a maze of boxes.  The new job is incredible!  I’m having fun and learning and I’m being a productive part of the team.  It makes me smile.  I don’t always look forward to the drive in right now, but that is because the roads are sometimes kind of iffy not because of the job.

I realized it had been a month since I posted.  Yesterday I was way busy with trying to get boxes unpacked and put away… so another day passed with no posting.  But here I am.  Alone in the dark, realizing how much my RA took a toll on me for the past month.

I don’t EVER want to go over two months without my meds again.  I got my infusion on Thursday last week and it was almost 9 weeks between.  Not good.  Way not good.  The last couple weeks it was all I could do to get up on the morning and get to feeling human.  I was running on prednisone (not a good thing) and determination.  By the time I got home from work every night all I wanted to do was take napproxin and sleep.

I was tired, short tempered, and I hurt.  The day before my infusion hurt so badly that my fingers wouldn’t work when I told them to and my knee wouldn’t bear my weight for long (and my weight is starting to come down slowly!).

I’m glad I spent an hour on the phone with the insurance company.  Goodness only knows how long I would have had to wait if I hadn’t pitched a fit.

But the infusion was Thursday.  The infusion center at Cleveland Clinic is incredible.  They give you graham crackers and juice and a TV and a blanket and you can have company while you are having your infusion.  For me, given it is 30 or so minutes, the visitor part was kind of nice to have but not as important as if I had been one of the longer infusions.

The infusionists use a neat light to find the good veins to hit and it went really well.  I still miss Keoto, but I think I will be able to do this.  In July I will be able to start getting my infusions in my town rather than having to go clear into Cleveland to get them.  I will probably try to do a work from home thing those days and save some time.  It’s way better to have to drive 2 miles to the clinic and back than to take thirty minutes by bus or car and have to pay for parking.  I’m starting to really like the city but I’m starting to really dislike parking again.  Eh, it all comes out in the wash, I know. but if I can avoid the extra hassle I think it would be awesome.

And here I sit, alone in the darkness, my creatures at my feet… coffee and a shawl… missing my left behind son… and contemplating getting around to do my daughter’s hair (the thought of that doesn’t make me wince this morning either!) and getting my butt ready for work.

 

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Posted in Orencia, reflection, rheumatoid arthritis

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Five weeks

Posted on February 1, 2014

Sitting at the glass table. No desk. Beggers can’t be choosers even if the overpriced loft isn’t actually nearly as good as a similarly priced apartment. Yay me. The fireplace doesn’t work. But it is a lovely place to stick … Continue reading →

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Run For The Water, One Week Out… Guilt and Worry and Excitement

Posted on October 20, 2013 | Leave a comment

So, I’m sitting here on this cool and clear Sunday morning looking at my 10 mile race just one week away.  My Figment outfit is pretty nearly ready (I’m working now on arm warmers that are the right color… just in case) and I’m really looking forward to seeing what my time is for this race.  I’m liking the course (mostly flat the first three and last three miles with some rolling hills in the middle) and I really think I can improve my chances for moving up a coral in January.

I’m trying to decide what color long sleeved shirt I should wear under my short sleeved shirt (lavender) if it ends up chilly like this morning on either race… I have yellow and white and red, and blue but I can’t find a single lavender long sleeved technical shirt (thus the arm warmers).

Amandya is doing the race with me.  She signed up late, and isn’t training, but that didn’t stop her in the half marathon last February.  She will make it.  I know she will.  And I know it will do her good.  She doesn’t like the fact that I’m probably not going to stay with her the whole race.  I’m not sure why it bothers her… she did 99% of the half all alone… and she is the one that left everyone else in the dust… and I’m just mom enough that I’m feeling guilty for knowing that I have to run this as my own race.  I have to push hard enough that I improve my chances in January.  And I’m just determined enough to leave her in the dust if I have to.  I’m putting the Disney music on her iPod so she has tunes to walk to.  I know she will be safe as long as she’s on the race route.  And we will be okay.

Guild sucks.

I’m sitting here, this early morning, with my right ankle wrapped in an ace bandage.  I should probably be doing a longish run today (to stick to the Galloway plan) but I was out in the back yard taking pictures of toad stools yesterday and I fell over a leaf and twisted my ankle.  In the grand scheme of my life, it hurts about a three.  But in the grand scheme of my current determination, it’s worrying me about a fifteen.  I’m going to take some industrial strength Aleve and try to at least take a walk a few times around the neighborhood to at least get what might pass for distance work in… but I can’t push… I can’t take the chance of hurting myself worse and not be able to do my best next week.

So… It’s nearly the end of October.  Disney let us know that they will ship our wrist bands December 2.  Our reservations look nearly right online.  and in a week I will validate to myself that I can…
1… finish a 10 mile race feeling way better than I finished the half in Feb
2… get times sufficient to move up a coral or two and improve my chances of not getting swept at Disney
3… race with my Figment outfit.  I may not get to get my picture taken with him in my outfit, but I can race through Epcot wearing my two tiny wings and my horns of a steer…

I know that my compulsion to run races isn’t really a popular thing… some people don’t understand why anyone would pay good money to go somewhere and go for a walk.  But… it’s something that I really love to do and it’s something that I’m going to keep doing.  This feels too good to give up on!  As long as I can, I’m going to.

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Posted in Half Marathon, rheumatoid arthritis

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

Posted on October 19, 2013 | Leave a comment

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.

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Because It Makes A Difference

Posted on September 24, 2013

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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Taking Inventory

Posted on September 13, 2013

Sitting here, cold coffee (not iced, just cold) by my side, wishing the pumpkin creamer was thawing faster. I’m running through the joints in my body, taking node of what feels how. The smell of Tiger Balm hangs in the … Continue reading →

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Whining and Kvetching

Posted on August 29, 2013

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 →

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Allergy Shot Day

Posted on August 28, 2013 | Leave a comment

There is something incredibly weird about sitting with a half dozen other people in the waiting room of the doctor’s office, everyone typing madly on their laptops. The only sound, the nurse calling the next victim, the almost imperceptible click of laptop keys, and the AC keeping us all from suffocation. And every hour the bells of one of the nearby churches. It makes for a really nice backdrop.
Thirty minutes later… lather, rinse, repeat.
We are bonded by our need for the shots. The need to not want to scratch our eyes out of our head. The need to be able to easily pull our next breath. I wonder at my fellow peeps’s (that is SO not a word) reason for being here. Do they have a cat that lays on their head all night? What weirdness do they have as their affliction? Goodness only knows.
One leaves
Another comes and takes his place.
There is something really awesome about a doctor’s office that thinks enough of its patients to provide WIFI access to them. And there is something to be said for the fact that I can sit here and be at work all at the same time and not have to take a Paid Time Off day for every day that I need to take three or four hours for shots.
I’m betting most of my fellow trap-ees have cedar allergies. It seems like EVERYONE here does.
I hope, when I’m done with my five (wait… five in each arm… ten) shots today are done, I will feel like stopping at Gold’s and working out… I need to get ready for the Disney Half. I need to lose sixty pounds. I need to feel even more human again. I’m really liking this feeling better stuff that I have going on right now. I keep thinking that I really like the feeling and I really REALLY don’t want to jinx it by thinking that I really like the feeling.
Should I be honest and tell them I forgot to take my antihistamine? Nah… I brought the epipen so I should be reasonably good… and I can take benedryl when I get home.
I wonder how telling it is that I really am starting to not notice shots so much any more. Sometimes I get black and blue marks from my methotrexate shots. Occasionally they hurt. Usually not really so much. I hardly notice them. Now these? I feel the pinch. It really isn’t even as much as a mosquito bite. I still feel the infusions… No matter how good Keiko is about them, I feel them. Sometimes they hurt. Usually, I just feel them for a bit.
Yesterday, I told my boss (and my team mates) that I would be doing this today. I seem to be a running joke, at work. I’m a walking pharmacy. Yeah… I guess I am. And I have entirely too much knowledge and understanding of what all is going on in my body and the bodies of my family. Sometimes I get a little bent at being laughed at… but other times I realize that there is a reason I’m going through this crap and there are people who I have been able to help and to talk to who have had an easier time of it because I know and I understand. I’m not entirely sure what that makes me, but… if I can help one, and that one can help one, then maybe a few people will have an easier time.
Whatever it is, and whatever it takes… I really like how I’m starting to feel… There are times when I forget what it is like to feel really good, to feel like I’m human and like I really probably can finish the Disney Half and not get swept. And when I do, I know I will want to do it all again in 2015… this time with my daughter!
It really is all a trade off… and it really is just a matter of being Dory and just keep swimming swimming swimming… and only boing off of the little jellyfish (and making a pet of squishy).

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Posted in allergies, Fitness, Half Marathon, rheumatoid arthritis

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On Bedside Manner

Posted on June 10, 2013 | 8 comments

I’ve been struggling with the bedside manner of doctors and their assistants for the last few days.  I’m not sure if that class isn’t required in medical school (you know the class, your patients are humans, they have feelings and you might want to remove your foot from your mouth BEFORE you speak and make everything worse) but I know there are a whole bunch of people who obviously flunked it.

I have a shiny new ENT.  I needed the ENT because without his approval that I don’t have Staph any longer and that it wasn’t MRSA and I’m good before I could get the Orencia infusion I was scheduled for last Tuesday.  I went.  I listened.  I answered all the questions honestly (I think that was my first mistake).  Dr looked me over and promptly told me that my face is deformed and that makes it defective.

Really?

They taught you that in medical school.  Tell your patients that they are deformed?  My new theme song is Hunchback’s Outcast.  Actually… it pretty much was before that… I’ve come to embrace my freakdom and realize that sometimes being an outcast is a really good thing.  It means I UNDERSTAND… but I digress (go figure).

So… one doctor told me I was deformed and defective.  Fail

Called my Rheumy office THREE TIMES to make sure they got the ENT’s report so I could get in to get my infusion just one week late (Like the Rheumy promised when I left without it LAST week).  The PA finally actually CHECKED the fax machine… Friday… oh wow, it’s here.  Sorry… grrrrr… well, you won’t be worked in this coming Tuesday, we are already double booked, and next week doesn’t look too promising either and we already cancelled your next two appointments because you didn’t get your last infusion on time. Sorry.  I will talk to the doctor and find out when we will be able to get around to working you back into the rotation.

It would maybe have come off better if she had SOUNDED like she gave two shits about me getting back in or the fact that the antibiotics the ENT gave me kicked me into the mother of all flairs.

The “gee, sucks to be you” tone sent me into a good thirty minutes of crying in the car (sitting in the parking lot of the boob squisher’s where I made the call to the Rheumy.  I know they have to double book the lady who does infusions.  I knew I was taking my chances of getting in anyway.  But the “I really don’t give a shit” tone just sent me over the edge.  It wasn’t MY fault I didn’t get my infusion. I was there, I was healed from the Staph, I was more than willing to get my infusion.  YOU people sent me away.  I did what I was told.  I’m DOING what I was told. Curb the bitchy attitude and learn that you are the PA not the principle at a Catholic School reprimanding me for being a bad person.

Okay, I understand that I frequently take things badly and that I react to the way things are said.  BUT I know that I’m not the only one.  AND I know that you CAN learn how your words sound.  I know that these people have a LOT of education.  I just wish that people skills were a little higher on the list of must have classes even if your dossier does say that you can part the red sea and turn water into whine (yeah… whine, not wine… bite me… it’s my homonym!).

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Posted in rant, rheumatoid arthritis

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But it’s just arthritis… Yeah… Right…

Posted on May 15, 2013 | 14 comments

The “just arthritis” that people talk about when they impart their wisdom on those of us who have courage enough to admit to having RA (or one of the other ‘flavors’ of autoimmune arthritis) is usually osteoarthritis.

The comments are usually something along the lines of…

If you would just lose weight you would probably feel better
Exercise helps everything
Have you tried Gluten Free
Oh, yeah, I have that too in my left knee.  I hate when it rains.
Oh, my grandma had that, but she was fine if she took a couple aspirin
You’ll be fine.  It might hurt but no one ever died from having a little arthritis.

I’m never really sure how to feel about the comments, because I am an odd person who tries hard to believe that most people are well meaning when they make these kinds of comments.  I try to not think they are being deliberately mean or uncaring.  I try to understand that they probably don’t understand.

What bothers me most are the people who, when you try to explain to them that I’m not just fat and lazy, I’ve been tested for gluten sensitivity (and every freaking other thing under the sun) and I’m actually finished three half marathons since my diagnosis.

I know that, after my half marathons,  my body gets a little ticked at me from the stress I put it through.  My joints swell, and I get what feels almost like the flu for two days.  I know people mean well by telling me what is probably wrong with me (and I completely understand that there are SO many things that can be wrong with me), but I know my body.  And I know my doctor.  And I know my test results.

I have shoes in three different sizes.  So I can be decently comfortable no matter how fluffy my feet joints are.  I have wool socks so I can make my feet warm no matter what the weather…. ones for my regular shoes and ones for my Hobbit Feet shoes.

My fingers hurt… in the joints and in the knuckle bumps (hello… knuckle bumps).

My toes hurt.

My ankles hurt and my knees hurt

Not all the time, but usually bilaterally, and when I flare, they swell to nearly twice their normal size.

I have to take infusions every month.  Infusions don’t do anything for “just arthritis  and I certainly wouldn’t spend $2500 a month for something that wasn’t going to be working at all anyway.  And it does (for which I’m very happy).

My hair is thin (I can hold it in an entire hairstyle with one bobbypin) because I’m on chemo drugs and I will be forever.  Chemo drugs do nothing for osteoarthritis.  When I tried by wean off of my chemo drugs, my body got so pissed at me I had to go back to the old dose and add in some extra meds.

I know that I can’t touch elevator buttons, pop cans from a machine, or doorknobs without thinking.

I have to hum happy birthday twice when I wash my hands after I use the bathroom.

I have to carry Clorox wipes with me.

I have to THINK about whether I can deal with buttons and jeans today or if I need to resort to elastic pants and pull over shirts (usually sweats and a t-shirt).

My primary care physician doesn’t even actually bother with diagnosis any more.  If I call with a problem that I’ve had before (and I’ve had many) she just calls in whatever it is I had last if it worked.  I’ve been her patient for nine years.  My record was three inches thick by the time they went full digital.

I think, though, that the bumps are the scariest.  “Just Arthritis” doesn’t come with fancy nodules that grow on your knuckles.  I have them.  I don’t yet have enough joint damage that my fingers lock in any one position or that twist and turn back on themselves.  I can still see the hands of my great great great (something like that) aunt that we used to visit who wasn’t as lucky as I am.

I fight every day to maintain where I am and to scratch a few inches back to where I used to be.

It isn’t the worst think that could happen to me.  I understand that.  But it certainly isn’t “JUST” anything, let alone Just Arthritis.

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