Tag Archives: Inflammation

What’s next

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It was a beautiful day here today and I treated myself to an hour long walk through the park and my neighborhood.

I have to bribe myself to walk lately- I think a summer of laying on my rear thanks to a flare has killed my motivation.  A couple weeks ago I figured out how to stream Pandora radio on my phone (my Ipod is MIA).  So I type in ‘old school rap’ and walk through the neighborhood repressing my urge to start dancing and feeling like a badass.  A badass who limps.

Can I please call that my pimp gimp?

Anyways, I was almost home this afternoon and a good song came on which necessitated an extra lap around the block.  Because, you know, it’s just not as much fun to listen to a good song sitting still!  In the course of that extra block, my left knee and left foot decided to mutiny.

I still haven’t been able to figure out how I can go from just fine to noticeably swollen in a matter of minutes.  It’s cruel.  It’s also evidence to me that I’m still having a lot of disease activity…

I have my last drug study appointment tomorrow.  I will find out what medication I’ve been on although I already am convinced that I’m on the placebo.  Why, you ask?  Because it hasn’t done a damn thing for me.  I feel like I’ve felt before- on the receding end of a really bad flare.  I remember how I felt the first time I took Humira and while I don’t expect to feel such a difference everytime, I would expect to feel improvement.  And I haven’t.  So…the drug study wasn’t beneficial but it also wasn’t harmful.

So what’s next?  My doctor wants to look at infusions. Specifically Remicade.  I want to try Enbrel first for a couple of reasons.  It would be so much easier for me to inject myself once a week than to go for a periodic three hour infusion.  Infusion therapy also really scares me.  I don’t want to try it until I’ve exhausted all easier resources.  I realize that sounds silly.

I’m a little frustrated.  From a lab-work perspective, my doctor says “you look great.”  I’m still seronegative which baffles me but my doctor doesn’t seem to think that is significant.  My CRP has dropped.  On paper, everything is better.  But physically, I’m still not where I was months ago.  My feet and knees are still bothering me.  My shoulder is too.  Remember that hellishly awful joint aspiration awhile back?  That ended up being a bust. Finger= just as swollen as it was before.  The fatigue is better but the nausea can still be a tad bit on the ridiculous side.  I’ve always had a sensitive stomach but it’s getting to be a running joke with my friends.  And if a certain coworker makes one more pregnancy/morning sickness joke, I may need help hiding a body.

Stay tuned- I will be sure to let you know if (when) I’m right about the drug I’ve been receiving and what the plans moving forward will be.

Crazy Prednisone Dreams

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I have weird dreams when I’m on Prednisone.

Granted, I’m in the process of tapering it off because my face looks like a damn jackolantern…but the dreams still continue and probably will for a little while longer.

A couple days ago I woke up in panic complete with flailing arms because I very vividly dreamed that there was a strange man standing over me.  Awhile back, I dreamed that Oprah was the mother of Michael Jackson’s children.

Um.  Okay.

I can’t figure out where the Prednisone dreams come from- normally I can trace my dreams to events of the day or tv shows I watch before bed.  But Prednisone dreams are just all over the place as far as rhyme or reason is concerned.

Last night, I dreamt that I was on an episode of ER.  And a specific episode to boot.

Strange…I haven’t watched ER since probably high school.  I used to watch Grey’s Anatomy but am more inclined to watch House now because the doctors on Grey’s seem to always kill their patients whereas patients on House tend to survive the episode.   It’s just a quirky personal preference stemming from the fact that I have health problems and don’t want to give myself a complex about having to go to the doctor.  But I’d still love to know why I dreamt about a very specific episode of a show I haven’t seen since probably 1998!

The plot is this: a patient comes in requesting an amputation of a leg (I think) and they put him on a psych hold.  Another patient is brought in by ambulance after having an accident with a chainsaw and, of course, brings said chainsaw.  One thing leads to another and the psych hold/would be amputee commandeers the chain saw and becomes an actual amputee.  Everyone bemoans the whole tragedy but the new amputee is fine and there is some discourse about how the patient felt a disconnect with the leg he so unceremoniously lopped off.

So I woke up and thought…well, that was random.  And my next thought was…I totally get it though.

I sure as hell feel a disconnect from some of my joints.  Especially when I’m flaring like I have been.  I think it makes it feel like less of a betrayal to me although I do still feel that.  A lot. And what if the patient had some excruciating condition on that leg that was completely unresponsive to medication and removing the leg would end the pain?  I realize that it was a psychological thing in the actual episode but taken from a pain perspective, boy do I understand.

Seriously, if someone told me that I could stop my RA pain forever by just removing said joint, I know I would seriously consider.

I also know that, in my case, I would have to lop off joint after joint and would end up resembling the Black Knight from Monty Python with WAY MORE than ‘just a scratch.’  And that even then, I would still have the fatigue and everything else to contend with.  Also, I would probably end up with vicious phantom RA pain because that is how my luck tends to run.

That would really suck!

Wow.  This has ended up a little more ‘dark’ than I intended.  I’m fine- I’ve actually had a very good weekend.  I just thought it was an interesting scenario.  Thoughts?

Here’s to hoping tonight’s dreams feature subject matter that is a little bit more warm and fuzzy!

Busy!

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I meant to do another update on here on Monday night.

But I was feeling spectacularly horrible from having to leave 10 (yes, you read that correctly) vials of blood at the rheumatologist’s office earlier in the day as well as getting my first shot of Enbrel (I think) too.  I say I think because I am getting either  Enbrel or Humira- the study examines patients who succeeded and then failed on one and then watching the development of antibodies after starting on the other.  (Please note the absence of a phd at the end of my name- it is entirely possible that I stated that completely incorrectly.) Anyway, I’m pretty sure I am getting Enbrel for several reasons.  First, Humira has a distinct injection site sting.  There was no injection site sting but there was an intramuscular sting.  Second, the actual vaccine felt much thicker.  Third, I had a crazy headache the rest of the day and some problems sleeping that night, which I never had with Humira and which are listed as side effects for Enbrel.  Oh yes, I am so that patient who is awake googling side effects of things at 4 am!  Fourth….knock on wood while you’re reading this because I sure am…but it seems to actually be doing something! And, well, Humira wasn’t exactly doing that anymore.

So then I was going to update on Tuesday.

But I felt lousy.  I don’t know if it was from the lack of sleep, the new meds, completely unrelated stress, or what.  It felt like I do every once in awhile on ‘the morning after methotrexate.’  Just shaky and so so tired.  So I came home and got in bed with a movie.

I totally meant to update on Wednesday.

But I was swamped with finishing both a huge presentation for work for Friday and prepping for a regional meeting on Thursday.  Which meant that I stayed late.  But I actually had energy. And I was able to dial back the Prednisone.

I’d lie and tell you I meant to update on Thursday.

But I left my house at 7 am that morning and didn’t get home until after 9pm that night.

And Friday…

I again left the house at 7am, had my boss, her boss, and several additional people with us all day at a huge presentation for a client.  I came home from work and walked up with friends to watch a bike race that takes places in my neighborhood every year.  I ended the night on my back stairs around 2 am, eating pistachios and doing some…..um…..scientific research.

I  didn’t update Saturday because I was still…um…..deciphering the….results of said research.

I think I made a dosing error.

Must. Do. More. Research. SOON.

But not too much research.

And today, right before I wrote this update, I went on a walk AND THEN did a workout tape.  It wasn’t pretty.  I was really winded really quickly. I had to shut the front door AND make sure the blinds were drawn. NOBODY wants to see that. But I did it.  I haven’t done that since Christmas.

But all in all, not a bad week!  I just need to continue on this path and to hold myself back from doing too much too quickly.

Tequila is gluten free.

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So yes, that’s pretty much my big take away from the weekend that started early Saturday morning with a shot of Toradol in my ass.  We’ll get to that in a moment….

Have you seen the movie Mean Girls?  It’s one of my favorite movies- snarky, hilarious and very well written (in my opinion).  If you haven’t seen it, in one of the plot lines, Cady is trying to sabotage Regina by telling her she should go on an all carb diet to lose weight.  Regina, not the brightest crayon in the box, keeps holding up items of food and asking “is butter a carb?” or “is bread a carb?”

So yes, that’s kind of how I feel right now grocery shopping.  It’s taking me forever and I literally read every package to see if it’s gluten free or not.  If I can’t tell by packaging, I whip out my trusty Blackberry and google “is rice gluten free?” I’m sure it’s pretty funny if you see it in action- me staring with a vacant, blank, confused stare intently at what is for most people a very simple package of food.  I’m sure it’s even funnier if you know much about my cooking style which I’m pretty sure I’ve alluded to here on multiple occasions.

Welcome to my home.  Allow me to heat you a wonderfully fresh gourmet Lean Cuisine.

But I’m slowly getting there.  I’m still cheating…but not as much…and have found a couple of things I really like.  I’ve found some items that are gluten free that really surprised me- TEQUILA and rice.  I even made a delicious Lentil casserole tonight.  And with that statement, somewhere, somehow, an angel got its wings.

I was being overly ambitious thinking I could go gluten and dairy free at the same time.  In fact, that’s what I was cheating with most often (I sprinkle a little bit of cheese everywhere- feta on eggs, cheddar on salads etc- and the soy cheese was awful.)  So I’m going back to baby steps- gluten free first.

So, about that shot in the ass….

I’ve give you the short version for now.

-  I went to a friend’s 30th birthday party on Friday night.  I rested all week for it, bought a new dress, and was really excited.

- Friday am, in true RA form, after a few days of feeling a little bit better, RA decided to make things more interesting.

- Things were so interesting Friday night midway through dinner that I left early.  I am still embarrassed- I tried to leave quietly but everyone asked why I was leaving and I had to give a bit more info than I wanted to at that time, especially to people who for the most part I don’t know.

- Saturday morning I woke up and things RA wise felt curiously differently.  By curiously different I mean REALLY EFFING AWFUL.  I wound up going to Urgent Care in tears, getting a shot of Toradol and prescriptions for another Medrol pack and Vicodin.

If I ever have children, they will be named Toradol and Vicodin.  For real.

That afternoon my neighbor, who witnessed my early morning emotional breakdown in the parking lot, came over to check on me.

Neighbor: So, how ya feeling Rockstar?

Me: A little better. Tired.  Sore.

Neighbor:  (chuckling) You must’ve had quite a night.

Me: (annoyed stare)

Neighbor: Ok, if you don’t want to talk about it…was it that bad?  Was he old or was he just not hot?

Me: (finally getting what she thought had happened) No, I was not drunk.  No, I was not walk of shaming home in tears.

I appreciate that though.  That’s awesome.

I would really like for my insurance company to hurry the heck up and approve this new medication.  Like immediately.

Hopeful?

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I’ve had this awful feeling for the past five weeks of “just push through it.”  Telling myself “I know you don’t want to do it and I know you’re oh so tired but you have to do it anyways” about virtually every facet of my life has been exhausting.  And when I finish one of the things that I made myself go to, I am totally and utterly wiped.  Physically and emotionally. It is important to note that the things I’ve made myself go to with this mentality include but are not limited to: work, church, family functions, and early dinners with friends.

This weekend, I didn’t feel this way.

Friday after work, I went and got a massage.  I realized when I was undressing that I’ve been completely lax with certain things.  I’d like to publicly apologize to my massage therapist for the leg follage she had to touch.  And also for the thong.  I typically wear granny panties to massages so therapists don’t think I’m a whore…but I haven’t done laundry in three weeks so she should be grateful that it was at least clean.  Awkward.

I know you all were dying to know that. 

Then I had a quick dinner date with a guy I don’t really like.  Horrible, I know, but flare or no flare, it’s a recession and a girl’s got to eat.  Is it even more horrible that I totally dished about the RA to him in hopes of scaring him off?  And is the worst thing here that it didn’t phase him at all and while I should be impressed, I’m actually really annoyed?

Flares don’t necessarily bring out the best in me.

I was tired when I got home Friday evening and got in bed to watch a movie.  I actually slept through the night for the first time in a long time.  Yes,  I finally caved and took the Tramadol.

It was a hundred degrees here on Saturday.  I awoke mid morning to a text from a good friend asking if I’d like to go to the lake that afternoon.  I got up, made myself a cup of tea, and sat on the couch assessing my level of fatigue and the stiffness of my joints.  And then I had a rather uncharacteric (of lately) thought: why yes, I DO want to go to the lake today.  

Hhhhhmmmmmmm. Interesting.

The water at the lake was perfect and felt amazing on newly de-follaged legs and sore joints.  I’ve learned that my flares like heat. I was a little concerned about climbing in and out of the boat since I am weaker than normal but it wasn’t a problem.  My friends were concerned about weakness too and made sure I was always on either a tube or a raft and brought an ample supply of bottled water for me.

I hit a wall around 10 pm that evening but considering that I’d been outside since 3pm, that seemed pretty reasonable.  I was home and in bed by 11 and awoke still covered in lake water and SPF 2000 about 9am this morning.

I’ve been tired and sore today but not as much as usual and  I spent my day doing laundry and cleaning.

 Do you hear that sound? That sound? No, THAT one! What is that?

Oh right, the choirs of angels re: laundry.

Joint Aspiration Follow-Up

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The joint aspiration of my left pointer finger occurred approximately a week and a half ago.  

Here are some pre and post pictures for you.

What my left pointer finger typically looks like:

What my left pointer finger looked like immediately post medical assault (note the red puncture marks on the left side, sexy RA nodule on the right):

What my left pointer finger looked like 5 days post medical assault:

Doesn’t it look so different from before?  Doesn’t it look so much better?

Yes, I don’t think so either.  Moving on…

And then, on Thurs (about 9 days after) something happened.

I was sitting at my computer typing when I realized that typing didn’t hurt me.  Not even a little bit!  I looked down…

Hello almost normal sized left pointer finger joint!  How are you?  I haven’t seen you in ages…like 4 years.  Have you lost weight?  Because I recall you looking like a sausage and now you’re rather hot dog like.  You look GREAT! I am ECSTATIC to see you!

Having an almost normal sized joint in that finger is both a blessing and a burden.  I’m very self conscious about how it looks when it’s so swollen so the blessing is to have it looking normalish right now.  It’s a burden because at normal size, I have more of an idea of what I’m dealing with in terms of loss of use and joint destruction.  

I still can’t bend it all the way.

Nor can I fully straighten it.

It just kinda hangs there, somewhat useless.

What usually feels so swollen now just feels weak.

The nodule looks like it’s gone but I can still see it when I bend the finger.

I’m not sure if it can be ‘rehabbed’ at all or not.  I may not be able to straighten it because I have absolutely no muscle tone left.  That I can fix.  I may not be able to straighten it because I have so much joint damage.  That I cannot.  I think that it’s most likely the second option but when I go back to the rheumatologist in a few weeks, I plan on asking.

I’ve had a few pity parties the past few days over the thought of having that much joint damage but I guess it just is what it is.  If I hadn’t had the aspiration, it would’ve continued to be swollen and it would’ve continued to erode the joint.  And when the joint was so swollen, it was basically useless to me anyway.  Which means I shouldn’t be upset about it but really doesn’t make it any easier to look down at it and seeing it looking almost normal yet not capable of doing what  I need it to do.

First Joint Aspiration: I did not die.

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Today I am typing with one hand because yesterday I had my first joint aspiration and cortisone injection into my left pointer finger. And yes, it was just as much fun as it sounds like, maybe even more.

At my rheumatologist appointment last month, he mentioned that he may be doing this at this month’s appointment if my finger didn’t look better.  Actually, he mentioned he might be doing this on two fingers so I guess I lucked out? 

Sure. 

So, as he was examining my hands I wasn’t surprised when he said he needed to do one.  I figured that it would be one of those things like “sure, let’s do one.  Talk to the scheduler and we’ll set you up to come back for it.”  That way, I’d have at least a few days to either wrap my brain around it or find a way to get out of it.  So when I said that  I would be out of town the rest of the week but could do it next week I was a bit surprised when he responded ‘that’s great that you’ll be out of town- because we’re doing this right now.”  He stood up, fetched some supplies out of the cabinet and started prepping the needles.

“Put your hand on the table and sit on the stool.”

GULP. 

He pushed and pushed on my finger with his hands, I assume trying to assess where he was going to go in from, which really really hurt. 

Then he finished up his prep work- one large syringe with a large needle that he would use for the aspiration and one smaller syringe and needle that he filled with a whitish liquid (cortisone).

“Ok, I’m ready.  You ready?”

NO!  I’m NOT ready.  I don’t let ANYONE touch my left hand so WHY ON EARTH would you EVER think that I’m ready for you to stick a needle in it? Being “ready” for this to happen is a day that will never come.  The better question would’ve  been “have you come to terms with the fact that I am the expert here and this really is the best thing for you” or “are you sure you won’t haul off and pop me when the needle goes in?”

I quietly shook my head yes and told myself to look away.

He sprayed my finger with the numbing agent and I didn’t feel the needle go in.

Gosh, those are some great mini blinds.  Are they plastic or are they wooden?  I prefer wooden but plastic is more affordable and in some cases easier to keep clean.  And a lot of the plastic blinds can be made to look like wood.  I wonder if I could afford plantation shutters right now.  I like plantation shutters. Wow, I’m doing it.  This isn’t so baa……  WHY THE HELL ARE YOU DIGGING AROUND IN THERE? Mini blinds, mini blinds, MINI BLINDS.  IT FEELS LIKE THE NEEDLE IS COMING OUT THE OTHER SIDE,.  Great, then I can put an earring through it- maybe a bull ring- as if my finger doesn’t look freakish enough- LET’S PIERCE THE DAMN THING.

“Ok, I’m done aspirating.  Now the cortisone.”

Ok, aspiration kinda sucked but I hear cortisone feels great once it’s done.

HOLY HELL.  I THINK MY FINGER IS GOING TO EXPLODE.  No really, actual explosion.  Joint, finger meat, and blood- coming at you in just a minute.  OH MY GOD. 

“Please stop.”

“It’s ok, I’m done.”

“I can’t bend my finger at all.  Is it supposed to do that?”

“Yes, I couldn’t aspirate as much as I wanted so you can’t bend your finger because it’s full of cortisone.  It’ll go down quickly.  Let me get you another bandaid.”

As I stood up, I realized that there was visible sweat on the table from where I had my other hand resting. 

“So, this will go down- it’ll probably be a little tender for 48 hours and you probably won’t be able to bend it for the rest of the day.  I couldn’t aspirate as much as I wanted which probably means that the joint lining is now really thick.  The cortisone should make it go down though so we’ll look at it again next time.  We may have to do it again, on this finger and possibly on the other one.  But I won’t make you do the other one today.”

Damn right you won’t.

And, drama queen tendencies aside, I don’t think it’ll be as scary next time.