Tag Archives: Meds

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.

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.

This flare is really getting to me.

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I finally got into the doctor on Thursday.  

“Dr. D, I’m having inflammation and pain in new joints.”

“Like which ones?”

“Um, how does that kids song go?  Oh right, HEAD, SHOULDERS, KNEES AND TOES, KNEES AND  TOES. Ok, maybe not head but also wrists, hips and fingers. And also, I am unable to comfortably do the movements to the aforementioned children’s song right now.”

“Hmmm, and on our last visit I thought you were really starting to show improvement.”

“Sure.”

He examined me and agreed that things have really regressed.  We are pricing out two options with my insurance company- either Remicade or Actemra- and hope to have a final decision made later in the week.

“Is there anything else I can take in the interim?  I’m really having a hard time functioning?”

“Are you not taking the Tramadol I called in for you last week?”

“No, I do not take pain medicine.”  

Yes, you read that correctly. I believe that pain is a good warning sign.  I don’t want to NOT feel pain and then do something that would end up hurting me more.  My pain is caused by inflammation- I want something to treat the inflammation. Does that make sense?  

You should probably also know that I worked in a pain control clinic for two summers in college that coincided with the debut of Oxycontin.   Best job ever for two reasons: HOT RESIDENTS who invited me to attend ‘liver rounds’ with them on Thursday evenings and a handful of our patients were so nuts that I never had a boring day. So even though I may joke about pain meds and laugh about the potential of medicinal marijuana for RA patients, I’m actually pretty adamantly against it on a personal level.   I do realize that I am most likely in a different league of patient than what we saw there: our worst drug seeker was the alcoholic who passed out drunk on the train tracks and lost his legs.  True story- only in the south….

“Well, I don’t want to give you anymore Prednisone- I know you don’t like taking it and I know the problems you’ve had in the past weaning off of it.”

“I’m not asking for Prednisone.  It’s just that I’m taking x Aleve a day to get any relief from the inflammation and I don’t think it’s good for me.”  (imagine eyes bulging out of his head and no, I’m not willing to admit the number but let’s just say there’s a limit in the PDR about how many you can safely take in a day and my intake matched just that.)

So he put me on Mobic.  Not really a fun of it but my stomach likes it better.

I stopped at the vending area to get a Coke before my bloodwork because I didn’t have any breakfast and really thought that passing out during/after bloodwork would be pretty sucktastic.  While I was there, I got to peek into the infusion center.  I was actually pretty impressed- it looked like a “real” infusion center, not like a doctor’s office infusion center.  

Bloodwork was a breeze as usual and I was out the door fifteen minutes later.

I’m feeling a little better tonight after 2 days of good rest, good food, and some serious quality time in the hot tub and steam room at the gym.

And now it’s raining so I think it’s time for me to get in bed and enjoy the sound!

Just a few thoughts on a Sunday

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This is random and scattered.  Just a warning!

-I got my bill for my joint aspiration last month on Friday.  All in all, total cost of aspiration was about $400, most of which was covered by my insurance.  That’s a miracle.  Especially since it was coded as “in office surgery.” If I’d known I was having “surgery,” I would’ve made some special requests.  Namely that awesome laughing gas I received when they took my wisdom teeth.  

- I went to church with friends this morning.  I’m a bit of a church snob because my grandfather is a Methodist minister.  Let’s just say that Granddad would be none too impressed that I went in jeans and flip flops.  I was kinda weirded out by that too but with how my feet feel lately, flip flops are amazing.  Anyway, the pastor was talking about financial freedom and about how he’s not trying to tell us what to purchase and what not to purchase but rather that we need to make decisions that give us freedom from debt.  So I was bored (I know, it’s wrong to say I was bored at church…but I was) and started thinking about if there are any choices I could make that would give me freedom from RA.  Not freedom by not having it (trying to be realistic here) but freedom by marginalizing it, by “putting Baby in the corner.”  

I realize that I need to make better choices about my health.  I live how I live until I flare and then I get all self righteously indignant on how “I had a salad last week dang-it and it sure did have  lot of veggies and I chose the LOW FAT dressing too because that is how terribly committed I am to my health.”  But come on Amanda: if you were as terribly committed to taking better care of yourself as you say you are when you’re flaring, you would’ve had that salad chock full of veggies more recently than last week!

I do realize there are other things that factor into flares but with this one, I am my own worst enemy.  I am very successful at making dietary changes….for about two weeks.

And before I turn people off by appearing to be anything close to deep or broading, I will tell you that I got the silly giggles during the last song (hymn? is it still called a hymn in a contemporary setting?) when everyone around me was swaying with eyes closed and hands in the air.  

-And finally, you know you’re taking Prednisone when you walk in to pay for your gas and find yourself lustfully eyeing everything “Little Debbie.”  OMG Zebra Cakes.

Back on prednisone

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Why hello to you too, my sworn frenemy.

I love and hate you equally.

I love you because you will give me some relief until my rheumy can get me into to his first available appointment…in June.  (Don’t get me started.)

I hate you because …..well crap, I hate you considerably more than I love you.

I hate you because I only take you when I feel like absolute poo.

I hate you because you prove that it IS indeed possible to gain a lot of weight when you have absolutely no appetite.

I hate you because you make my skin crawl and give me night sweats.

I hate you because you make Aunt Flo come early and give me crazy mood swings. 

Addendum: My coworkers hate you for that second part. And my mom.  And the poor customer service reps at my insurance company.  But let’s be honest- I really don’t care about the feelings of my insurance company, prednisone or not.

I hate you so much that everytime my doctor mentions putting me on you, I cry.

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Hello frenemy #2.

I do not hate you at all because on Saturday, you will meet YOUR sworn frenemies- full foils and bleach.

I’m tired.

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I’ve had a go go go past few weeks.

I have:

-Spent a week in CA for work. Going to bed at midnight CA time but waking up automatically at 645 NC time does not make RA happy.

-Drank too much tequila my last night in CA and flew back to NC with an extreme hangover.

-Hangover plus stiffness from traveling plus lack of sleep=mini flare.

-Slept for two days. Fitfully because random places keep swelling.

-Went to bluegrass festival in the boonies.  Was the only ‘non-hippie’ there. LOL.  Was made to stand in the back of the bus on ride back to parking area.To quote my friend, “how do you feel being made to stand not just in the back of the bus, but in the back of THIS bus?”  Laughed hysterically and blasted Outkast on the way home. 

-Learned from this situation that even if I’m in a flare, I don’t hurt as bad if I do something I want to do vs something I have to do.  Would this be called selective RA? Ha.

-Hit my highest personal production my office has ever seen.

-Had to deal with some growing pains due to my increased production.  But growing pains because of increased production = good whereas growing pains caused by shrinking production = not good. 

-Stress from high production and growing pains = skipping lunch, not drinking enough water, increased fatigue.  Continued random pains.

-Found out our company’s chief sales officer (who is kind of scary…but very nice in person) would be spending a day with me….the day before she got there….and wanted to go with me on several client appointments. No stress.  While dealing with a mini flare.

-Pulled said appointments out of my rear.  Still not quite sure how I did that with such big prospects and such little notice.  Mini flare became ‘congratulatory flare.’

-Screwed up my Humira injection- it clicked like it normally does when it’s done.  It was not.  Spraying approximately $1200 worth of Humira all over your kitchen is not good for flare.  Or temper.

-Had my direct supervisor in town Monday – Wed this week.  Direct supervisor is a hoot but a horrible driver.  I thankfully did not get carsick.  Again.  Jolting around in a car for three days is not good for mini flare.

This weekend, I head to my cousin’s wedding.  If you don’t sense excitement, you may be correct.  Nothing against my cousin.  I love her and I’m very happy for her. But the last thing I want to do is to spend more time in a car, more time on my feet, making small talk dodging questions about both RA or why I’m still single at a dry wedding with vegan meal options in a barn in the middle of nowhere.  For real.

I need a massage.  And a break. 

Goodnight!