Snow Day

I should be thankful for a quiet few couch days thanks to 2-3 inches of snow.(Which from those of you who have never been to NC, you should know that I’ve actually seen people put chains on tires at mention of a hard frost.  3 inches of snow = complete shutdown.)  

I should be…but I’m not.

I have some serious cabin fever.  I hit a point this morning where I thought “I’ve cleaned and organized everything possible.  Laundry is done. Cat has all new litter and is unwilling recipient of flea treatment. DVR has been watched and cleaned out.  WHAT DO I DO NOW?”

You see, I turned down not one, not two, but THREE things I really wanted to do this weekend because right now I’m still a little fearful for my joints.  Sure, I feel better.  Sure, the meds are working.  But bottom line is that they’re still swollen and thus more susceptible to injury.

I do not like missing out on fun.

So, big fat no to kayak sledding.  Which is exactly what it sounds like.  Sledding.  Down a snowy hill.  In a kayak. (Yes, I realize I’m 30 and entirely too old to do things like this.  In my  defense, I get to play in snow maybe once a year and therefore revert to my inner 8 year old self. An 8 year old girl with a Solo cup.) I foresaw myself crashing in a huge blaze of glory and breaking my fingers.

Another big fat no to going hiking today.  Although this wasn’t as hard of a no as kayak sledding was.  It would’ve involved me getting up entirely too early for a weekend morning.  Again, I saw myself falling and catching myself with my hands.

And finally, a big fat no to simply walking through the neighborhood in the freezing rain that was pelting us.  Which killed me.  I love walking in the snow and ice.  It’s so quiet and peaceful.  If it had been just snow, I would’ve been game.  But it was not.  And yet again, my fear was….slipping and falling.

So, I sat.  Enjoyed the snow from my window and sat on the back steps with my neighbors for awhile.

Maybe we’ll get another snow in a few weeks that I can more fully enjoy.

I needed to see someone who looked like me.

Wednesday, January 11, 2006

“Your x-rays still show no new bone growth on either foot so we can rule out a stress fracture.  Your bloodwork, however, was much more revealing.  Your rheumatoid factor is a 68; it should be less than 20. Your CRP and ESR are also elevated.  These results, in conjunction with symmetrical joint swelling in your feet and hands all point strongly to rheumatoid arthritis.”

Blink.

“I’m going to start you on several medications today.  Celebrex for pain. Prednisone is a steroid that we’re going to start you on a high level and taper you down.  This will reduce the inflammation while the other medications start to work.  Methotrexate is a chemotherapy drug.  It can have some pretty nasty side effects so we’re going to start you low and build you up to 8 a week.  I’m also giving you a combination folic acid and vitamin B to help combat the side effects.”

Blink.  Chemo???

“We’re going to do this for two months and then re-evaluate to see if you need a biologic.  How do you feel about giving yourself shots?”

Blink.  Giving myself shots?  For what?  I don’t even know what it is that I have. Please just let me get out of here.   

I’d never even heard of rheumatoid arthritis.  When I thought about any sort of arthritis, all I could picture were the elderly folks my church youth group would visit with at the holidays and my great grandmother.  I mean, think about it: that’s generally what’s shown in advertising. At the time, I had no clue that there were many types and that they could affect people my age.  

To make matters worse, after getting home from the doctor that day, I decided to “educate” myself on rheumatoid arthritis.  How, you ask?  By using the END ALL BE ALL most reliable and authentic source of all information in the entire universe: ye merry olde interwebs.  Needless to say, I was much better off “uneducated.” I had no idea at the time that there was such a general misconception of what RA is.  To this day, I see pharmaceutical ads on TV and in magazines that are just wrong.  Hello Enbrel ad from 2009- I shall never forget you. But at the time, I took them as fact.

So I cried for hours and then took my raccoon eyed self to the mall where I dropped $200 on the cutest pair of incredibly fugly orthopedic dress shoes.  I remember thinking ‘so, I guess this is life now. So long running.’ Then I decided my best course of action was to hide this from everyone and would continue to do this for over 2 years.

Let’s just say this was the worst decision I could’ve ever made a decision that made everything harder and based on my own uninformed ideas and leave it at that, ok?  

So, what does Rheumatoid Arthritis look like?

Specifically, Rheumatoid Arthritis was 26 on that day.  A friend, a daughter, a sister, a coworker.  Loves running, kickboxing, reading, dancing. Very reluctant to let go of any of these things. Very sensitive and self conscious when she received  a diagnosis that she didn’t think she was representative of thanks to horrible misconceptions.

Except that she was.  Right on the money actually.

Demographically, RA is 20 – 40 at onset and two to three times more likely female than male.  Rheumatoid Arthritis is an autoimmune disorder in which the immune system attacks joints.  It is chronic yet also very treatable through combinations of very strong medications with many patients (yours truly included) able to eventually return to almost normal.

Yet the arthritis the public generally attributes to ALL autoimmune arthritis conditions is osteoarthritis- the condition caused by wear and tear  from aging or overuse and the ONLY one where “just go take a Tylenol” may yield positive results. 

That’s frightening.

“Buckle Me Up!” International Autoimmune Arthritis Movement is an up and coming non-profit dedicated to helping those suffering from autoimmune arthritis conditions by increasing understanding and awareness through education, partnerships, and support.  We are trying to raise money to finance legal fees and startup costs associated with filing 501(c)(3) paperwork.  

I can’t imagine how much this would’ve helped me when I was newly diagnosed.  Having information and support and people to talk to would’ve made everything so much easier and less scary.  And believe you me, it was a very scary and lonely time.  

It would mean the world to me if you would visit www.bucklemeupmovement.com/donate to read more about this and to donate $1.

Setbacks

Ok universe, I would very much appreciate a redo for today, please and thank you.  It is 9:30 on Saturday night and I am supposed to be dancing my booty off with some friends at a concert.  Instead, I am on the couch, more than a little loopy from muscle relaxers.  

Very long story short, I’ve had extreme shoulder pain for the past 48 hours.  Extreme to the point that I can’t lift my right arm, seriously considered wearing a sports bra to work under my suit because the other ones were so uncomfortable, and couldn’t really change clothes or do my hair without tears.  I tried stretching, meditating, ice, heat, and more stretching.  It continued to get worse.  It felt frighteningly familiar and last night when trying to sleep, I was so scared that I felt like I was going to hyperventilate.

You guys know what my fear was, don’t you?  Sudden extreme pain, loss of function, a sensation of “twisting.”  Please no symmetry, please no symmetry, please no symmetry.  I just don’t think I can handle this again.

I went to the Saturday am sick clinic at my doctor’s office this am (WONDERFUL concept) and after initially scaring the crap out of me, they have ruled out torn rotator cuff (which was surprisingly their main concern) and arthritis involvement in the shoulder  (the joint looks really good, no inflammation to speak of)and are thinking it’s tendonitis that has really aggravated all the muscles nearby.  I have a follow-up appointment this week and they are wanting to set me up with physical therapy.

Whew!  I’m ok with tendonitis.

I have no idea how this happened.  They keep asking me if I have fallen recently (surprisingly no) and have I been working out a lot lately (HAHAHAHAHAHA.)

I have a pretty high tolerance for pain now and this whole shoulder thing….it takes a lot for something to hurt so bad that I burst into tears and am willing to venture out of the house dressed like a hobo with really bad bed head.  In fact, this tendonitis kicks RA’s ass.  I never thought I’d say that.

Now that doesn’t mean, my dear sweet RA, that you have free license to stop playing nice. Because you don’t.

Massage Therapy and a breath of fresh air!

I will admit it: I am addicted.  

It calms me, it soothes me, it relaxes the muscles of my back and neck which bother me, it stimulates an immune response which helps me manage my RA.  I crave time where I am forced to do nothing but chill.  And this takes the cake.

I’ve been to probably 10 different therapists over the years, most of them good, some of them atrocious.  A memorable one would be the guy who chuckled when he had me roll over and got a glimpse of boob.  And proceeded to stare.  Thank you, douchebag- because of you and how uncomfortable you made me, I now only go to female masseuses.  Have fun at the club tonight by yourself with your balding yet spiked hair and Ed Hardy shirt. I bet you like techno music and use cheesy pickup lines.  

I digress.

I found my current one by chance.  A coworker had a gift certificate that he wasn’t going to use.  ”I don’t like being touched and I have a problem laying naked on a table in front of a stranger.”  To which I said “I do and I don’t.”  I called, made an appointment and by luck of the schedule, got this one.

Seriously, she is the best one ever.  Not because of her bodywork (which is great) but because of her interest in auto-immune disorders (family member with Webener’s who is on Prednisone and Methotrexate) and the fact that she’s currently studying naturopathic medicine.  

I admit, if you really think about it, that it’s a little weird meeting someone for the first time and five minutes later, you’re laying there with no clothes on.  Somewhat like a frat party?  (Sorry, Mom- totally kidding.)  It’s even a little more intimidating when you have to explain to them that “hey, I have this thing and these spots that if you aren’t careful, you could really hurt me.”  I’m accustomed to having to explain what and where every time I go to the same people.  I’m also very hesitant to let them touch the spots.  In fact, until this one, I’ve never let anyone touch my affected joints.

So, imagine my surprise on my second appointment when she asked to see my hands before we started.  She looked at them and gingerly touched them.  ”Ok, you’re a little swollen today.  I just wanted to check before.  How are your feet?”  Wow.  I seriously think I hugged her.

It’s made a huge difference in how I feel.  I’m getting massages weekly like my doctor recommended for the first time ever with no fear of injury.  She is more in tune with my RA than my rheumy is.  She has picked up on the spots in my wrists that bother me sometimes, which I’ve never mentioned, and this week made me happy by saying “Your fingers really look much less swollen lately.”  I had noticed it too but hadn’t said anything to anyone because I thought it was just me being hopeful.

She’s given me advice on supplements-where to buy and brands to try, recommended a yoga teacher who can help me modify things when I need to, and is encouraging me to try acupuncture.  She’s familiar with my medications and is very empathetic on their side effects.  We talk about diet and foods that are by nature inflammatory.  

 I’ve had better conversations with her than I have with my doctors.  And in some cases, more well-informed conversations.  I really believe in treating the whole person, sometimes I feel that my doctors don’t.

I swear I had a point here.  I’m excited.  I’ve always wanted to approach my treatment as a partnership.  I only want people to understand where I’m coming from and where I want to go.  I want to get a massage as often as my budget allows.  I only want my goodies ogled in an appropriate venue. I want to have clinical conversations about my rheumatoid arthritis that don’t make me feel like crying.  And for now, I have that.

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MTX is off the hook…this time

So yes, everytime I have any weird sort of symptom, I immediately look for a way to blame it on my RA.

A week and a half ago, I woke up and my armpits were itching.  Not just a little bit but almost unbearably.  I had just restarted methotrexate so I looked on WebMD and a couple of other places and found a few articles linking this to a. irritation from deodorants or b.some sort of fungal infection not uncommon in those who have suppressed immune systems.  Immediately, bells went off in my head.  Damn you, methotrexate, damn you! 

I was absolutely certain it was (b) but went ahead and bought hypoallergenic deodorant just in case and added it to my list of things to discuss with my doctor this week.  The deodorant didn’t help so I just knew,  JUST KNEW, that it had to be the immune system fungal infection.  I mean, what else could it be?  

Tuesday evening, I was sitting on my couch with a cat on my lap, enjoying a cold fall night.  I was berating myself for not vacuuming up all the leaves I had tracked in when I saw it.  IT.  On my cat.  A wee beast.  Crawling up her neck.  And another!  On her belly.  And OH MY GOSH- another one- on her leg.  I brushed her and examined the fur on the brush- little black specks everywhere. THE HORROR.

A quick call to a doctor friend confirmed the sinking feeling in my stomach: generalized itching could also be caused by fleas.  Especially if the cat spent the day sleeping on my bed.  Which would probably lead to unbearable itching in the morning.

I took a trip to the vet rather than the rheumatologist on Wed (not for me, for the feline) and what I suspected was confirmed: the cat who has never been outside and only sees other animals through the window has a raging case of fleas, most likely picked up from leaves I tracked in.  

So with a good dose of Frontline and furious cleaning efforts on my part, the itching is gone.

So, no fungal infection.  Can’t blame methotrexate for this.  Or even RA.

FLEAS.

H1N1 Vaccine

I laugh that I can keep up with the world by simply looking at my friends’ Facebook status updates.  A few recent favorites include “Jeff intercepted a memo reminding Delhomme that he plays for the Panthers” and “Megan is beginning week 3 of (f)unemployment.”  

Today, I noticed probably 8 updates about the H1N1 vaccine.  They ranged from the funny (Jack SAYS GET VACCINATED DAMMIT) to the mundane (Rebecca is going to her 24 week OB appt and getting her H1N1 shot).  It is the latter which really upset me.  I am upset because, within 20 minutes, she had 4 nasty comments from people berating her for putting her child at risk, implying that she’s a bad mother, and then it quickly spiraled into a discussion about vaccinating children.  No, discussion is not the term. Virtual flogging is probably more appropriate.  It was cruel and I can’t imagine how she felt coming home from her appointment to read that.

Then I thought about some of the reactions I’ve had from people without RA to  the medications I’ve taken.  My favorite was when someone asked me what I took and then, in front of people, shook his head and said “poisons!”

To medicate or not to medicate: that is the loaded rheumatoid arthritis question.  And a very personal one at that.

I will be the first to say that I’ve been on some pretty hardcore medication for over 3 years.  I have also tried going med free and using alternatives.  At the end of the day, I simply have more success on the medication.

Do I read RA blogs that advocate little to no medication?  Yes.  Do I find value in them?  Absolutely. To be completely honest,  I’m quite jealous of people who are successfully med free.  But after reading the research on the long term effects of uncontrolled rheumatoid arthritis (uncontrolled by meds OR uncontrolled by alternatives),  I have decided that, for me and me alone, I need to take the medication and supplement with alternatives.  

Same concept with the H1N1 vaccine. For me (and obviously for my friend), benefits outweigh risks.  I’m not telling anyone what to do (although I have made the blanket statement at work that anyone who doesn’t get the vaccine, comes to work sick and gives it to me, if it kills me, I will come back and haunt you.  Poltergeist style. I say this even though I am getting it.  I just have luck like that.)  

I will say that I think everyone in the at risk groups should seriously consider getting the H1N1 vaccine.  That’s my opinion.  Doesn’t mean it’s right. If you choose not to, that’s your decision and I respect that we are all different people.  

But, at the risk of hateful comments, I ask that you make an informed decision.  That’s all. RA Guy has some great links explaining more.

Traveling with RA: Success! Finally!

Traveling with RA can be a pretty unpleasant experience for me. Once, I went to the beach on methotrexate and got so nauseous at dinner that I had to leave.  I got sick and cried myself to sleep.  Then I went to the mountains and was so stiff and uncomfortable with the cold and snow that I ended up leaving early.  Again, tears.  It’s just so unfair that I can’t always enjoy the same things that everyone else gets to.  Sometimes I even dread it.

Last weekend, I went to Baltimore for the wedding of one of my favorite people and to hang out with a lot of my other favorite people.  I was absolutely determined that RA was not going to get the better of me.  And…it was an absolute blast!  Someone told me earlier this week that “everybody just looks so happy in the pictures” and they are right- and that was the whole weekend, not just for pictures.  I could tell you story after story about how much each of these ladies means to me….but that’s a whole separate post about support systems. They mean the world to me. Sorry I’m gushing but seriously, they rock.  

 

I slept well both nights- which is unusual for me in a strange bed.  I was able to still be comfortable even with pouring down rain and cold- I was really stiff Sunday night but that could’ve been from sleeping on the plane.  I haven’t restarted my methotrexate yet (did this on purpose so I could have alcohol) so I didn’t have much trouble eating.  Dancing?  No sweat.  Flip flops in my purse!  Scariest part of the weekend- walking down a steep hill in spike hills in the pouring down rain.  I had visions of my butt hitting the cold, wet concrete and somehow hurting my hands….but I didn’t.  I will admit that I did hit a little bit of a wall on Saturday night after the reception- but I think someone without RA would too after flying, staying up late, dancing like crazy, and just having a lot of active fun.  And it wasn’t the bone crushing mental fog inducing fatigue I usually experience but more of a I MUST EITHER SIT DOWN IMMEDIATELY OR GO TO BED IMMEDIATELY.  

Sure, Monday was hard.  I got up late and went to bed early.  But this is the most successful trip I’ve had since being diagnosed.  No crazy “I just don’t have the energy to get out of bed but did anyway and spent the rest of the day in a hateful mood”, no pain, no vomiting, no having to skip out on things because I just don’t feel great.  Whew!

What did I do differently?  I actually planned for all of these things to happen. Seriously- I convinced myself that I was going to feel like crap.  I started taking Airborne, Vitamin C, and Zinc supplements several days before.  I even considered getting a B-12 shot the day before I left.  (I didn’t though- didn’t have time.  But may in the future.)  The night before I left, I went ahead and started taking Aleve.  I had Thermacare heat packs, Biofreeze, and Prednisone with me.  I don’t know if it was the whole immune system jolt I gave myself or the whole “if you wash your car, it’s going to rain” thing that seems to be true of my life, but someway somehow I was able to finally enjoy myself in spite of RA.

Now, if I could only see my peeps more often.  Hint, hint.

An Open Letter to my Future Rheumatologist

Dear Dr. (insert your name here),

First and foremost, let me tell you that I’d so much rather be shoe shopping than rheumatologist shopping.  To put things in perspective, I’ve never gone shoe shopping and left with 5 vials less blood than I came with.  Rheumatologist shopping…different story.

I’m really frustrated.

I think I’m a pretty good patient.  I like to understand and learn as much as I can about my disease state, what exactly is going on in each joint affected, why certain bloodwork is ordered, how my medications work, different options for treatment etc so I can have informed discussions with you.  I do not believe in blind faith as far as medical care is concerned, especially MY medical care.  

In return, I do ask a few things of you.  I expect you to listen to my medical history, understand my goals, respect my concerns, and work with me to find a mutually agreed upon plan.  Specifically, I am open to resuming methotrexate if you are open to me not resuming it.  I’m not trying to tell you how to do your job or play games.  But I am telling you that I’ve had minimal success on it and I would like for you to look at my medical history, think about it, and see if you can come up with a better idea.  That’s all.  If you think it through and still think you’d like me to try it, sure, I’m game. I do realize that practicing medicine is exactly that: practicing.  

But I do ask that you practice- don’t just give me what you give all your other patients.

I don’t think I’m asking the world here and this is not just about methotrexate, although that is a sticking point with me.  I would just like your time and thoughtfulness before you stick me on any strong medication or other uncomfortable course of treatment that (let’s be honest here) you’ve probably never taken yourself and don’t have firsthand experience of trying to function with the side effects of in your daily life.

Here’s to hoping that the next one of you is better!

On a serious note

Today is my uncle’s third deathniversary.

 Of all my extended family, my Uncle B and I were the closest.  He was incredibly sensitive, kind, hysterically funny and very intuitive when it came to feelings of others, particularly mine.  My brother spent a year in Iraq and B remains the only person I’ve ever talked to about it in depth.  He knew how scared I was, how badly I was handling it, and some of the thoughts I had about it that really bothered me. He went out of his way to check on me with phone calls, emails or funny forwards everyday of his deployment.  My parents didn’t even do that; it meant the world to me.

 Three years and two weeks ago, unbeknownst to most of my family, he moved in with my grandmother while trying to work out some extreme marital difficulties.  Believe me when I say most of us had no idea.  I still have emails from those weeks where NOTHING is off.  No weird tone, no signs of depression, no mention of any problems he was experiencing with his wife.

 Three years ago this morning, my grandmother went to water aerobics.  We have put together this much:  around 11:10, B called his attorney and got  devastating news.  Around 11:35, another uncle had a missed call. My grandmother returned home later and found B in her garage.  Self inflicted gunshot.

What happened after that I hope that none of you ever experience.  Reactions that ran the emotional gamet.  Mine was extreme rage.  Not at my uncle, mind you, but at his wife.  Anger so pervasive that I would lay in bed at night unable to sleep and so overwhelming that I had a hard time breathing.  My dad wouldn’t allow me to attend the funeral because I couldn’t promise I wouldn’t make a scene if his wife showed up.  And relationships with her torn beyond repair to this day: imagine two separate obituaries and two separate funerals.  In the same town.  Because when you are trying to keep a suicide quiet, that is a sure fire way to fly under the radar, right?

 Imagine what that did to my RA.   I was newly diagnosed and newly on meds.  My symptoms went from a 4/10 to an 9/10 overnight. Anxiety and sleep medications interfered with the efficacy of the RA meds.  And I was in no way, shape or form even pretending to try to take care of myself.

 I guess what I want to say is that I know as a part of our experience, we do experience depression and anxiety while we’re trying to manage our symptoms. I hope we all know that experiencing it and seeking help for it is not a sign of weakness.  Actually, I think it’s an extraordinary show of strength.  I’ve done it and I hope if you are ever in that boat that you do too.  I was pleased to learn that there are counselors specializing in pretty much every area- I’ve been to both grief counseling and one that specializes in chronic illness.   Well worth the investment!

 We’re all strong people here and we’re doing all we can do to live with our respective illnesses.  I think it’s so important that we’ve found each other and continue to talk and support each other.  Knowing that you are not alone is a huge thing.

I wish everyone had that.  I wish my uncle had that.

 I still look for him at holidays and family functions.  From what I hear, that will never go away.  I still cry about it if I think about it too long and I will probably never talk to my “aunt” again, especially since she hasn’t allowed my grandmother to see my uncle’s young son since his death.  I think that’s shittier than shitty.  I  choose to think about him everytime I hear an AC/DC song- I did that because it’s one thing that I don’t associate with the pain of losing him.  And yes, there’s a GREAT story behind that. I miss him and love him like crazy and am incredibly thankful for the limited time that I had with him. 

 And I’m very thankful for all of you.