Tag Archives: chronic illness

Wellness Contract Update

Standard

Alternate title:  The post where my writing makes my lawyer friends cringe.

(Address withheld)

23 February, 2011

(Address withheld)

Dear Amanda:

You are hereby put on notice that as of 23, February 2011, you are in breach of our contract dated 13 January, 2011. The nature of said breach is:

-Consumption of more than 3 glasses of wine per seven day period beginning on a Sunday during the period of 13 January- 23 February, 2011 bordering on perceived mocking of said contractual clause.

-Consumption of three jars of Tostitos medium queso WITHIN A THREE DAY PERIOD.  Also, over consumption of “comfort foods” during a cold.  Contract to be modified to allow some comfort foods but never again will daily meals consist of pancakes, grilled cheese, and baked spaghetti.  Boo hoo hoo…you didn’t feel good…NONE OF THESE ARE GLUTEN FREE.

-Blatant disregard for physical activity or cleaning provision of contract.  BLATANT disregard.

It is our desire to inform you of the foregoing and demand that you cease and desist the above behaviors to cure said breach. You are already being held responsible for all damages arising from said breach in the form of increased joint pain due to the introduction of gluten and alcohol into your body, increased fatigue due to glutens and lack of physical activity, loss of favorite clothing due to inability to put up laundry leading to you not being able to find a damn thing, and lost opportunities to regain strength and increase mobility through responsible exercise.  You may be held responsible for additional damages arising from said breach.

You have until 23 March, 2011 to cure said breach, after which we will be forced to further recognize that your own decisions are in no way helping your health.

Regards,

Amanda

Where Feeling Normal Makes Me Look Weird

Standard

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

Standard

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.

Here we go

Standard

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

Standard

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.

World Arthritis Day

Standard

(Note: OH.MY.GOODNESS.  Auto post failed me  today.  This was supposed to post at midnight last night.)

So it’s World Arthritis Day today, Amanda.  What would you like?

I’d really like to NOT have arthritis but apparently that doesn’t seem to be an option nowadays so let’s see…

I would like…(rubs chin)

-a massage

-CARBS

-my way with James Franco

Hmmmm.

I’d also like an easy button.

I realize I will probably only get the first two things on my list this year.  But I’d like to think that we’re approaching my ‘easy button.’

You see, an easy button to me would not just be hitting the big red buzzer and immediately being Rheumatoid Arthritis free.

For me, an easy button could involve never having a lay person scratch their head and inquire if I have tried ASPIRIN yet.  Well geez.  I have a rheumatologist, a nutritionist, at times a physical therapist, and at times a shrink.  You know, Mr. Lay Person, I think you’re on to something there.  I don’t think that those four very well educated minds have ever thought of seeing if they could control my symptoms with Aspirin.  Nope, they just skipped straight to low grade CHEMO for shits and giggles.  FOR THE LOVE OF GOD.

An easy button could involve never having someone attempt to commiserate with me by offering up the stiffness they have in their elbow from all that tennis.  Yep, that’s how my pointer fingers hurt.  From all that tennis.  The best part is when I go on a short run and come home to immediately have my right jaw start aching.  I’ll spend the whole next day resting my jaw.  Then my right knee will hurt for a couple hours. No reason. Just because.

Damn tennis.

An easy button would make it to where I never have to explain to someone that it is INDEED possible to sleep 12 hours straight and still be exhausted.  Mind numbing, bone crushing, can’t put sentences together exhausted.  Tips hat to methotrexate.  Unless you’ve been there, you have no clue how tired I can be at times.

Please note that I’m trying to make a point.  I’m doing ok right now.

But we have made progress.  Just last month, the Arthritis Act passed the House of Representatives.  Companies are taking a more active interest in both marketing to our specific patient population as well as taking time to make sure they are accurately portraying us in the media.  Important steps certainly but not yet enough.

In honor of World Arthritis Day, please help me move closer to creating my easy button by participating in IAAM’s global awareness event.

IAAM, the 1st nonprofit in history that focuses exclusively on the 7 Autoimmune Arthritis diseases, is asking you to participate in this global awareness event by forwarding and posting this newsletter and, if possible, purchasing one of the 3 awareness designs shown on the publication.  These items can be purchased by visiting the IAAM website at www.IAAMovement.org.   (The awareness designs range from $5-15 with 100% of the proceeds donated to IAAM to create future awareness programs).

 

Hiking and Horses

Standard

One of two lengthier updates so bear with me!  Lots going on! Let’s start with the Labor Day update which was supposed to accompany the pictures I posted closer to actual Labor Day.

It was a great mountain vacation- great friends, great food, great hot tub that got completely overloaded with too many people, and overcoming some fears to do some activities that I used to do quite a lot.

Exhibit A: Hiking

Ok, ok, ok…so I don’t really CARE for hiking too much.  Growing up, my dad’s idea of hiking was ‘let’s carry all sorts of crap in heavy backpacks and spend a week living like our ancestors did off of the land.’  He’d always try to con me into it by mentioning how much I loved the computer game Oregon Trail.  But no matter how cool it would be to walk into a store and say ‘I’d like to buy $1400 worth of bullets…and an axle,” I can’t forget that all my Oregon Trail people always died of dysentary.

Anyways.

So I’d compromise with him for this trail near our house. Not too hilly, not too flat, not many roots,we’d catch up, he’d get to be outside, I’d get to not die of dysentary, and an hour later, on the way home we’d sometimes get ice cream.

And then RA happened and I haven’t done it since.

I was nervous on Saturday when my friends announced that the plans for the day included an almost 2 mile hike.  For the record, I’ve done multiple 5K’s since this happened.  Would I give a 2 mile walk in my neighborhood a second thought? No. I’d be confident at this  distance on any flat terrain without roots to watch for.  But this particular trail is very uphill, very uneven ground, and lots of roots. I had visions of tripping on a root and falling forward to catch myself with my worthless hands, and really getting hurt.  The area is also a tad bit isolated and I didn’t feel like it had a good ‘escape route.’  Donner Pass much?

You don’t know you can’t do this until you try it and can’t do it. You have no basis for this whole root anxiety especially because your biggest guy friend is on the trip and you can make him walk with you and catch you if you need it. You probably won’t need it. If something happens you know your friends won’t have to kill you and use you for food because it’s not even winter yet. If you successfully complete it, you can buy those black and pink plaid rain boots you’re having hard time finding a reason to justify buying.

I am proud new owner of black and pink rain boots. And for the record,  nothing hurt afterward except my butt = not a joint.

Exhibit B:  Horseback Riding

I grew up riding horses.  LOVE it.  One of my favorite family vacations growing up was a horseback trip around the Grand Tetons.  If you’ve ever even seen pictures of how beautiful it is out there, just imagine how beautiful riding through them on the back of a horse is.  Surreal.

I quit riding when I hit high school for dancing.  I continued dancing in college- with boys at parties. The closest I came to horseback riding in college was this one time I contemplated riding a mechanical bull in a country line dance bar outside of Knoxville.  For the record, I did not.

So when I found out that a couple of the girls on the trip wanted to go riding, I was PUMPED.  I had visions of myself yet again flying through the mountains on this beautiful horse in beautiful crisp early fall weather.  I was GIDDY.  I googled several places, narrowed down the list, and called the final contenders.  I emailed the information to the interested parties.

And then I remembered the closest I ever came to getting hurt on a horse.  I was really little and I somehow cued my horse to canter (similar to a gallop).  I wasn’t expecting it and I almost fell off.  And then I remembered how my friend Lisa fell off her horse when we were 12- she hurt her back and broke her nose.

I went ahead and paid my deposit to reserve the horse but didn’t commit to doing it until I got there and saw that it was a slow, guided ride on a very broken in trail.  I was a tad disappointed in that- I wanted to RUN- but even with the slow pace, I was really nervous the first few times the horse lurched.

Exhibit C:  Getting Tricked Into Hiking A Longer and Hillier Distance

With two successes under my belt, I felt more confidant.  So when we were on our way back and a friend asked if I was ok with stopping to do a hike along the Blue Ridge Parkway, I was immediately game. (Graveyard Fields for those who may be interested.)  I was even more game when I inquired as to the distance and was told less than a mile.

Yes!  I LOVE hiking!

We headed down the paved walkway to the Falls which were indeed less than a mile from the car.  They were beautiful- really cool looking rocks- and we all took our shoes off and soaked our feet in the freezing cold water.

I walked back up the rock face to the path when I noticed the group heading off in another direction.  I followed suit without question but realized quickly that a) the paved path turns to rocks and roots very quickly and b) this is all uphill. When I saw this, I again directed the distance question to my friend leading the pack.  He responded with “4 miles” and apparently I made a face.  And then he said it:

“I mean, just how bad are your feet flaring right now?  You did yesterday’s hike fine. So do they hurt or don’t they?”

OH NO YOU DIDN’T.

Now keep in mind that this is someone that I hang out with a lot and for the most part really enjoy hanging out with. He obviously knows about the RA but obviously doesn’t understand much about how symptoms can change.  In that moment, I really really really disliked him. But I get it- he wanted to do the hike and knew that if I said I couldn’t do it, most of the people we were with would probably join me back at the car. And that is how I decided that come hell or high water, I was going to finish the damn hike.

I disliked him even more as he began showboating for the group.  He called it stunt hiking- running up the trail and jumping over roots ninja style.  It was really annoying when all I’m trying to do is not fall on really steep and really uneven terrain.

I felt much better when he face planted while showing off his ‘root double axel.’

The whole ordeal very clearly illustrated the principle that one of friends (who is a personal trainer) believes: men are overly confident in their athletic ability while women doubt their athletic ability. Especially women with RA. :)

Coming up next: white water rafting, Lady Gaga concert, and the ACR Advocates for Arthritis in Washington DC.

372 Month Update

Standard

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.

Somewhat of a solution

Standard

I sat down to write a post tonight that I’ve been stewing on and all of a sudden things went a little haywire.  Phone ringing, email buzzing, friend stopping by…so until I have a little more time to spend on it I will leave you with something I shared on my Facebook page that I’m still sheepishly chuckling over.

What does one do when one buys an expensive bottle of vitamins from the vitamin store and realizes after one removes the plastic security seal hence rendering it unreturnable that one is totally and completely physically unable to open said bottle after trying with bare hands and numerous implements?

Why you lose your temper and grab that ‘forever sharp and will cut through steel’ knife that your mother for some reason thought you needed when she was at a stooped up tupperware party and that you unceremoniously threw in a drawer and forgot about, you saw the top off, and then you store the topless vitamin bottle in a ziplock bag.

Problem solved.

Crazy Prednisone Dreams

Standard

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!