Tag Archives: Meds

Where Feeling Normal Makes Me Look Weird

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I’ve been out of town for the last two weeks and while I should write a post detailing the absolute thrilling joy that traveling across the country with RA can be, I thought I’d devote a little time to what I did yesterday instead as it reminded me of something that I think we all sometimes forget.

I totally enjoy being sick now when it has nothing to do with RA.  Weird, right?

I’ve been battling a cold that has settled into my sinuses for over a week now and it’s been glorious.

I’m serious, folks!

I’m sick, yes. I’m coughing.  I’m sneezing.  I’m nauseous and even threw up once.  I’m dizzy.  I’m exhausted.

BUT IT’S A NORMAL COLD! THAT’S TURNING INTO A NORMAL SINUS INFECTION!  THAT RESPONDS TO NORMAL MEDICATION!

I went to the doctor the other day and there was no scratching of the head in confusion over what’s going on with me.  I went to the pharmacy to fill my prescription and there was no pharmacist dying to talk to me about crazy side effects OR giving me the pitying why is she on that look. And OH MY GOD, normal illnesses have NORMAL CO-PAYS!  Oh how I miss those! To think that I got to go to a pharmacy and for once, it did not make my bank account cry.  HAPPY. DANCE. I told my friends what was going on; they all nodded in true understanding and we shared war stories.

And then I did something very unlike me.

I took yesterday off.  I totally called out sick.  I NEVER do that.  Heck, I rarely ever take vacations!  And the kicker…my Blackberry was down most of the day so not only could I not work on my couch but NOBODY COULD CALL ME WITH DUMB QUESTIONS.

I had a wonderful, albeit a stuffy nosed, day in pajamas, glasses, and no makeup.  There was no cooking- I broke diet and even ordered a pizza. I watched a movie in bed with my furchild. I did a moisturizing mask for my face. I did my eyebrows (I now have two again, it was getting bad!), AND I used my new paraffin wax treatment kit and pampered my hands and feet.

I still don’t feel great…but isn’t it nice…yet weird…the ways in which we sometimes can feel normal?

Decisions, decisions

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I’m so tired of having to make them.

10 years ago, the weightiest decision I had to make was which party I was going to go to.  I mean, seriously people, that was a MAJOR conundrum.  The guys at the Farm were always way hotter but the guys at the House of Big Decks always had free beer…what a quandry!

If you’d told me then that at age 31, I’d be on a medication that’s a low dose of chemo, another one that’s really bad for because it can kill bones and other things, and deciding between two different treatments that are both 8K-10K per year…I would’ve smiled at you, turned away, rolled my eyes as far back in my head as possible, called you crazy and went back to my beer.

What a difference ten years makes!

At my follow-up with my rheumy on Thursday, they approached me about another study.  Yes, I’m supposed to start Orencia last week. Actually, I was supposed to start it beginning of December. But who’s keeping track! I had it scheduled and everything.  But the insurance verification trolls made me delay it yet again.  SO FRUSTRATING.

Anyways, it’s a Phase 3 study by Eli Lilly for a yet unnamed drug that’s showing a lot of promise.  For the first six months, you get either one of two different dosages OR the placebo.  After the first six months, everyone gets the drug for five years. It’s self injectable every two weeks and would require me to stop by the doctor’s office once a month to pick up the injections.

In all honesty, my first response was HECK no.  I saw no benefit for me with the first study I did.  I’m certainly not going to stay on Prednisone for five years- you are batsh*t crazy if you think that’s going to happen. BUT, after reading on the new Lilly drug, learning that you can taper off of Prednisone during the study and doing math on how it would help me financially to not have to pay for co-pays, x-rays, labs, or meds for five years as well as five years of not having to fight with that douchewad known as Blue Cross Blue Shield….well, that right there is something to think about.

The fact that it’s less of a time commitment (on paper) than Orencia and the fact that after the first six months, I’m guaranteed to be on the drug…that’s even more to think about.

I’m torn but leaning towards doing it. I think many of us would say that new medications are scary, not from the side effects, but from the ‘what am I going to do if this doesn’t work?’  It took awhile but I had originally married myself to the idea of being on Actemra. Then my doctor wanted to wait on that and try Orencia first.  I was upset about that until I read more about it and finally agreed with him.  So now I’m married to the idea of being on Orencia.  And now that’s maybe going to change too.

It’s just scary. I think my doctor could see it on my face when we were talking about it.  I got quiet (which doesn’t happen often) and he just looked at me and pointed out that all the drugs that have made it to Phase III in the past 10 years have been very successful.

So now I feel like I’m kinda back to square one without a plan.  Also, I feel more than a little bit jerked around by the insurance trolls.

Am I really old enough and smart enough to be making these kinds of decisions???

It really doesn’t feel like it sometimes.

2011 Wellness Contract

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So, in a long overdue blog update, I thought I’d post the contract that I typed and posted on my fridge. After posting and thinking about how I do so well with goals at work, I completely dorked out and wrote something similar to what I work with all day, everyday.

Initially, it was to begin on Jan 1st but I spent the first two weeks of the year cheating and tweaking and learning how to cook.  Yes, you read that last part right.  I can now make the following paleo style: chicken marsala, roasted veggies, braised cabbage, greek chicken, stewed apples, and fajitas served on lettuce rather than a flour tortilla.  And you know…the first time I made roasted veggies, I went back for SECONDS because they were GOOD.  Any of you who have ever fell victim to my culinary inexperience would know that this is a definite first!

So, I tried and am learning and thought I’d restart the contract on a date more meaningful to me: January 15th, my diagnosis anniversary date.

2011 Wellness Contract also known as

Operation Get Your Sh*t Together

This contract is made between yourself (an individual, referred to as AJ) and yourself (an individual referred to as AJ) and will commence on January 15, 2011 for a period of thirty (30) days and can be renewed with negotiation on both parties after each thirty (30) day period.  Neither individual can hold the other liable for any results or lack thereof resulting from actions defined in this contract.

The purpose of this contract is to establish certain desirable behaviors that may or may not directly influence AJ’s health or well-being and overall standard of living.  Behaviors include the following:

Medications: AJ must take all medications as prescribed for the next thirty (30) days.  It is not acceptable for AJ to skip medication for the following reasons: desiring alcoholic beverages, sheer laziness, or not wanting to have an upset stomach.

    1. Medications, specifically methotrexate, may be skipped if AJ is battling a cold or other illness or has been exposed to communicable diseases.
    2. AJ is granted an exception to methotrexate for a week involving any air travel but must resume methotrexate as soon as air travel is complete.
    3. If medication is forgotten and not missed because AJ doesn’t feel like getting her lazy self out of bed, it must be taken as soon as remembered.

Diet: AJ must try to eat in accordance with Paleo Diet guidelines.  This includes avoiding the following: Starbucks, Jason’s Deli, and any sort of buffet/meat and three dining preferred by AJ.

  1. Exceptions may be made for work functions where there are no other options AFTER AJ has attempted to find something that falls within Paleo guidelines.
    1. Starbucks may be substituted with coffee from a coffeemaker and rice or almond milk may be added for flavoring purposes.

Alcohol: AJ is allowed three (3) glasses of red wine per week.  Each glass of red wine must be accompanied by healthy food and a full glass of water.

  1. A glass of wine is defined as a NORMAL wine glass around 4-6 ounces, not a big gulp, big nasty, or anything with the words big, super sized, or fishbowl attached to it.
  2. No, seriously.  4-6 ounces.
  3. Topping off a normal wine glass continuously DOES NOT constitute one glass of wine, even if AJ may typically consider it one continuous glass.  Each top off constitutes a new serving.

Exercise and Cleanliness: Each night, AJ must either go to the gym for 30 minutes of light impact cardio, a yoga class, or, if neither option is available or if AJ is unable to go, something at home must be cleaned.

  1. Light impact cardio is defined as thirty (30) minutes on a machine, walking in the neighborhood, or taking a class.
  2. Light cardio is NOT spending thirty (30) minutes watching hot guys playing basketball at the gym while “waiting” on a machine to become available no matter how much this affects AJ’s heart rate.
  3. Yoga classes must be completed.  Also, it is unacceptable to attend a yoga class after consuming one (1) or more glasses of weekly red wine.
  4. AJ is not to be that creepy girl in yoga class who reeks of alcohol ever again!
  5. If neither yoga nor gym attendance are options, AJ must clean something at her place of residence (address omitted).
  6. AJ must clean whatever is most pressing.
  7. It is unacceptable to stall on a chore while waiting for another chore to be done.  IE AJ will never, ever, ever again put off folding two (2) weeks worth of laundry because she was waiting on herself to make her own bed…for two (2) days.

Miscellaneous, also related to cleanliness: AJ will put things up in their proper places at the proper time.

    1.     Coats: are hung in the closet by the door, not on chairs or floors.

    2.     Laundry: belongs in the hamper, not on the floor next to the hamper.

    3.     Toilet paper rolls: are deposited in the trashcan and new rolls are placed in the holder, not on the floor next to empty rolls.

    4.     You get the picture: clean up your crap!!!!

     

    At the conclusion of each thirty (30) period, contract will be reviewed and, if determined that AJ is TRYING (not perfect), AJ will be rewarded with a manicure and pedicure at salon of choice as long as price does not exceed thirty (30) dollars.

    Contract may also be modified if necessary and renewed for consecutive thirty (30) day periods.

    If it is determined that AJ is not trying, AJ will have to publicly acknowledge not trying on blog and to friends and coworkers.

    Off to dream about pretty fingers and toes in a month…

    Here we go

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    So I am a slacker blogger as of late…I am sorry!  I got back from Cali and got super sick- a cold turned sinus infection turned bronchitis.  Two rounds of antibiotics later and I’m slowly on the mend.

    Isn’t being sick on immuno-suppressant medication SO. MUCH. FUN?  Not only can my body turn a piddly little cold into not one BUT TWO other illnesses but then the cold and two other illnesses decide to grab beers, play trivia, get more beers, play some darts, do some shots, hit the dance floor and just in general take their sweet time in leaving me.

    Geez,  Walk of shame it away already!

    Anyways, I’m in the midst of regrouping, refocusing on the diet and starting in on the next plan.

    Funny story before I tell you the plan.  I was cleaning and organizing my hall closet the other night.  I went to get something out of the other closet and when my socked feet hit the hardwood floors, I fell hard.  I was not close enough to grab on to anything except that I was close enough to the ottoman that I drug my nose down the side of it the whole way down.

    Excellent.

    After assessing that my nose was NOT bleeding and  that I did not have visible ottoman burn, I slowly sat up and examined my hip, knees, and hands.  I was sore, yes, but nothing seemed wrong beyond that.

    Falling with RA is always an issue.  Falling for me, since I’ve been flaring constantly since April, has been a fear for months.  A major fear.  I just don’t feel as physically strong as I was a year ago.  In fact, I haven’t felt this weak since I was initially diagnosed.  I know I’ll get the strength back but until then, it’s just kinda scary.

    So it happened and I did not die.  Good to know!

    So, back to the plan.  I found out that I was NOT on the placebo in my study but was actually on Enbrel.  A surprise, yes, because it did nothing for me.  So I am now going to be starting Remicade which I’m terrified of.  I will start most likely next Wednesday since I have most of the week off.  I don’t really care if it makes me nauseous because I despise turkey so it will have no bearing on my Thursday plans.  I know, I’m a sucky American.

    Why am I terrified?  I’m not afraid of needles.  I think it’s just the thought of it.  People only get infusions if they’re really sick. And I just don’t want to classify myself that way because when it’s under control, I’m fine.

    So if I can fall which is something that can really seriously injure me and be fine, then certainly infusions can’t be that bad, right?

    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.

    372 Month Update

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    Dear Amanda:

    Yes, you are writing yourself a letter in third person.  Why? Well, for one thing, Facebook has ruined you.  You and your friends tend to state things as Facebook status updates.  Why, I am not sure. Damn you, Facebook!  For another, you spend an awful lot of time reading the blogs of all of your friends who have children.  And so, in honor of your 372 month of life, you thought you’d be funny and mock the monthly updates that a lot of them do.

    Yes, my dear, you are 372 months old today.  Let’s see what you’ve been up to!

    Height: 5’6…you get very defensive if anyone says 5’5 because your goal in life was to be taller than your mother…who is 5’5.

    Weight: 110 is the weight on your old SC drivers license.  For the record, it also says you’re 5’8.

    Hair: Yes, you’ve had a full head of it for approximately 370 months.

    Eyes: Still blue.

    Motor skills/development: You’re working on being able to grip things. The actual gripping is fine but you have a hard time with ‘grip and twist.’  Hey, doesn’t that sound like a dance  move? And speaking of dance moves, you’re going to be taking a dance class soon.  You learned another lesson while searching for a dance class.  Never google ‘adult dance class.’  The results will not be what you are searching for.  A better query would be ‘your town name AND dance class.’  You can search through specific studios pretty quickly this way and not have to worry about people seeing the results in your search history.

    Language Skills: Some problems here.  Nothing that a well placed bar of soap couldn’t fix.

    Diet: You are SUCH a cheater this week.  But tomorrow starts a new week and a new commitment to being truly caffeine, gluten, dairy, and anything that tastes good free.  You really can tell a difference when you stay true to the diet.

    Milestones: You are officially off of Prednisone.  YEAH!  Your wrists are really sore today- maybe because of this or maybe because of excessive red wine consumption. Who knows.  But you’re off of it and you’re still functioning which was not the case a few months ago.  Also, you attempted riding your friends bike the other night and while it wasn’t pretty, you didn’t fall on your ass!  YAY!  And when your friend offered to run after you holding the seat like you’re a baby with training wheels, you didn’t say anything incredibly rude!  MIRACLE!  Nope, you just cut your eyes, took another swig of wine, and wobbled down the driveway on the bike (which I may add is WAY too short for you) looking quite mature for your 372 years of life if I do say so myself.

    What’s next for you: another glass of wine and some cake.  Duh.  Then some building back of strength/stamina that you lost over the summer, some losing of weight that you gained over the summer, and hopefully some attempting of antibiotic protocol after you finish your study.

    Seven pounds

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    A picture speaks a thousand words, right?

    Meet my little bundle of claws, Molly.

    She’s seven years old and weighs fourteen pounds.  She’s my feisty baby. :) This picture shows her in one of her favorite places giving me the old ‘turn the water on and I’ll hairball all over the clean laundry next time you leave it piled on the guest bed’ look.

    Does it help conceptualize how big she is by seeing her in the sink?

    Good.

    Now chop her in half and attach one of the halves to my butt.  Because that is how much weight I’ve gained on Prednisone since June.

    I know that sounds horrible in several ways. I realize I need to not be so vain. I realize that I’m lucky to have access to healthcare and medications.  I realize I need to be happy that I guess I’m feeling a little better (although I now think I’m getting the placebo rather than Enbrel because I’ve dialed the Prednisone back to less than 10mg and I’m not feeling as good) but I’m really upset about the weight gain.

    I weighed 113 when I went to college.  I admit that was too skinny- I’m 5’6. At my heaviest, after long term Prednisone use, I wore a size 12 and was teetering on having to go up a size.  I have a hard time looking at pictures from that time. But I started to feel better, got off Prednisone, and took back control of my diet and exercise. In May/June, I was a size 4.

    I worked my butt off.  Literally.  You know how on all the weight loss shows they have super scheduled workouts, controlled meals, top notch trainers, supportive friends and family, and then they all somehow get fabulous makeovers for the finale show?  Um, yes….that doesn’t really happen.  I did splurge on a trainer who was enormously helpful for the diet and exercise part and am considering doing this again.  But scheduled workouts?  No, anything beyond our weekly appointments was up to me to make sure happened.  Controlled meals?  Again, all on me.  Supportive friends and family?  They tried. “I’m so proud of how hard you’re working, Amanda.  Now let’s go get Mexican and drink lots of beer.”

    I am still waiting for my makeover.

    So to gain 7 pounds so quickly after it took AGES+ literal blood, sweat, and tears to get it off….I’m having hard time not completely freaking out about it plus I feel gross and bloated and uncomfortable.   But I’m also really weak from this dang flare so really getting in a workout right now is tough.

    I started easing myself back into the gym this week.  On Monday, I did 12 minutes on the elliptical- there was much hacking and wheezing and general feeling like I was dying!  I had intended to do 15 minutes and then some light weight training but my legs felt like jello.  I took yesterday off mainly for the courtesy of the other people using the gym.  Today was better. I did 20 minutes on the elliptical. Then I did 3 reps of 10 on the leg press at 40 pounds and 2 reps of 7 of walking lunges with 8 pound free weights.  (Point of reference: I used to do 3 reps of 15 on the leg press at 75 pounds and 3 reps of 25-30 walking lunges.)

    Then I sat down on the bench and did a mental checklist of weight exercises I used to do: nope, can’t do that one yet and that other one would be a lot of force on my knees which isn’t a good idea yet.  And oh heck no, I am NOT doing that one because it completely sucks. So then I went home.

    But it’s a start and I’m happy with what I did tonight.  My goal is to work up to 30 min/3 times a week for both weights and cardio.

    I have a fun fall coming up: heading back to DC for the American College of Rheumatology’s Advocates for Arthritis where I’m ESPECIALLY excited to see some of you there, two trips to California, a Lady Gaga concert, tickets to see the Carolina Panthers, hopefully another trip back to SC, and a birthday a month from tomorrow. Ok, I’m not really excited about that last thing.

    I would really like my present to myself to be the absence of those freaking seven pounds.

    Note: no cats were chopped in half for the writing of this post.