Lifescript

If anybody’s interested, here’s the lifescript.com article about women RA bloggers:

“Rheumatoid Arthritis Blogs: Tips from Women Who’ve Been There”

I’m on page 4 with the bad crazy-hair photo.

Too much fun, too much pain

NE Minneapolis

This weekend was a bit of a crazy one, for me anyway.  I went out Friday and Saturday night getting about five hours of sleep total.  Alcohol units consumed – too many to want to count.  Surprise, surprise my joints were very sore and painful Saturday and Sunday thanks to the incredibly unhealthy weekend.  Oh yeah, also add in the fact that I ate a disgusting amount of McDonalds and WHITE CASTLE.  Someone should probably just shoot me right now and end the misery.  But! It’s Monday, a new day, a new week.  It’s time to detox and get back on track.  Was the sleep-deprivation and arthritis flare-up worth it?  Yes, I think so.  I feel like I haven’t had much of a social life lately and it was really great to hang out with friends again, even if I overdid it a bit.  The joints seem to be back to normal now, thankfully, after sleeping 12+ hours last night.  Rheumatoid arthritis is such a frustrating mystery most of the time, however I do know with 100% certainty that lack of sleep (and boozing) makes me noticeably flare up and hurt all over.

Sunday afternoon I decided to take some photos in the St. Anthony Parkway area of Northeast Minneapolis.  It was a very gray dreary winter day, but I think I got some good shots. Check out the photos on Tumblr - meinherz.tumblr.com

Monday dumb day

I can already tell this is going to be a long day.

I dragged myself out of bed and rushed around the house like a maniac trying to get out the door and to my doctor appointment on time this morning.  I had an appointment with my rheumatologist for which I had been waiting three months.  So I sped over to the clinic, nearly ran a couple blocks and then raced into the office not wanting to be too late (I am always late…for everything).  Well, lucky me, I was indeed far from late.  Standing at the check-in counter like an idiot the woman told me that my appointment is TOMORROW morning.  Oops.  Me: “ha ha ha ha…uhhh…ok, I’ll….uh…see you tomorrow.”  Duh.

So yes, now TOMORROW morning I have my rheumatology appointment along with an appointment with my endocrinologist right after that.  If I’m late tomorrow I’m going to punch myself in the face.

In other news, I had a pretty good weekend.  I went to see The King’s Speech which was fantastic.  Sunday I puttered around in my pajamas all day drinking tea, watching public television, and playing Scrabble  like an old lady.  Last night I made a fool out of myself singing karaoke with my “karaoke krew,” which is always pretty awesome.  I screwed up singing “Maps,” which my friend then aptly referred to it as “Craps” for the rest of the night.  It was really good to get out and have a fun night at the Vegas again like old times.

RA update: Still off caffeine and prednisone (YES!).  Joints feel pretty good, which is a wonderful feeling.

Thyroid, anxiety, and caffeine

I’ve been off caffeine now for two weeks, and while I greatly miss my daily cups of black tea and coffee, I think cutting out caffeine has made my arthritis better.  I’ve been meaning to give it up just for general health purposes, but this time it’s been out of necessity.

The back story that prompted my caffeine sacrifice is that two weeks ago I started suffering from extreme anxiety and mini panic attacks for seemingly no reason.  I’ve had anxiety and panic attacks in the past, but they were always a result of some specific thing(s) I was worrying about.  This time, the anxiety hit me out of nowhere.  The normal stresses of work and Christmas busyness have been getting on my nerves this month, but nothing to freak out about.  Nothing worthy of heart palpitations, shaky hands, stomach pain and nausea.

After a couple days of very uncomfortable jitters and jumpiness, I decided to call my pharmacist and ask about one of the medications I’ve been taking that had just changed.  I’ve been on citalopram, a generic for celexa, for the last two years.  I’ve never had a problem with it, but wondered if the latest refill might be causing the anxiety.  The new refill was also for 20 mg of citalopram, but it was from a different manufacturer than what I was used to taking.  Speaking with the pharmacist made me feel a bit relieved (that I wasn’t going crazy) and confirmed that changing the manufacturer of a generic drug could indeed cause these types of side effects.  She immediately offered to refill my prescription with the former generic I was used to.  The next day I threw out the “bad” drug and started back on my regular medication.  I was hoping this would solve the problem and that I’d feel normal again right away.  However, it’s not until…um…yesterday that I really feel better.  Maybe it just takes this long for the “bad” generic to get out of my system and my old stuff to kick back in?  I have no idea, but it’s been really awful feeling so anxious for this long.

Remicade (infliximab)

More terrifying - the needle or me with no makeup?

I had my Remicade I.V. infusion today which went well, as usual.  Today’s session was especially nice because for most of the three hours I was there, the entire place was empty.  QUIET!  While nurses took my vitals, pumped my veins with a steroid, saline, and finally Remicade, I tried to relax and read my book.  These bi-monthly infusions are kind of a pain, but I prefer them over having to give myself injections of Humira or Enbrel weekly or bi-weekly (which I have done before).  The  Humira injection is especially painful due to the preservative that’s in it (the worst stinging pain you can imagine as soon as the needle pierces your skin).  Yes, I’d much rather have a nurse gently hook me up to tubes than to have to stab myself with a sharp dangerous needle every two weeks in the fat of my lower abdomen or upper thigh.  I’ve been on and off Remicade since 2003, and throughout all of the tests and trials of other similar medications, so far it’s been the one that has worked best.  I feel very fortunate that during my decade of having RA I haven’t had a lot of trouble dealing with side effects from all of the strong medications I’ve been on.  Other people I know and have heard about have suffered almost more from the meds than the actual RA.  It’s a very frustrating and “Catch-22″ situation – what’s worse, the disease or the drugs?

Here is some “fascinating” information about Remicade from their website — if anybody’s interested in what is coursing through my veins at the moment:

REMICADE is a biologic therapy that recognizes, attaches to, and blocks the action of a protein in your body called tumor necrosis factor alpha (TNF-alpha). TNF-alpha is made by certain blood cells in your body.

• The immune system protects the body by responding to “invaders” like bacteria, viruses, and other foreign matter that enter your body by producing antibodies and putting them into action to fight off the “invaders.”
• In plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, TNF can cause your immune system to attack healthy tissues in your body and cause inflammation and damage.
• If these diseases are untreated, it can cause permanent damage to the body’s bones, cartilage, and tissue.
• REMICADE will not cure inflammatory disorders, such as plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, but blocking TNF-alpha may reduce the inflammation in your body.

COMING SOON:

A possibly lengthy, hopefully not boring post about the hula-hoops I have to jump through and numerous handstands I must do in order to afford to get this treatment.  Without insurance , the total charges for Remicade and its administration = $6,275.00 – EVERY TWO MONTHS. I probably don’t have to tell you that my crappy insurance doesn’t pay for all of it. Thank God for The Patient Access Network Foundation, which has allowed me to continue with Remicade and therefore let me live a fairly normal life (instead of one of intense pain and probably bound to a wheelchair).  But yes, more on this later.

(P.S. My knee is better and it does not miss the peas)

St. Cloud

I’m driving up to St. Cloud tomorrow morning (EARLY! auuugh…6:30) to take photos for the Arthritis Foundation.  There’s an arthritis fundraising walk going on there, similar to the annual one in the Twin Cities and the JAM walk I volunteered for in March.  It’s a really nice course/path by the river and I’m looking forward to it.  I just hope I can drag myself out of bed and get there in time.  I am NOT a morning person, and I’ve had to wake up super early every day this week for Census training.  It will be worth it though.  Let’s hope I get some good pictures (I’ll post them on here sometime soon, probably).

Sleep…sleep…I JUST WANT TO SLEEP. uhhhhhh.

And my body is hurting worse as I wait to get accepted for Remicade assistance.  I worked two hours this morning for the Census and then 5+ hours at Dan’s typing/data entry.  By the time I left there my wrists, hands, and shoulders were throbbing.  My right hand is starting to swell, too, which is worrying.  I just hope my application with the Health Well Foundation goes through next week.  Why must these things take so long?  I need my drug now!  I refuse to go back on prednisone.

ok, goodnight invisible readers

Arthritis, ADD, or is it just me?

It’s nearly 1.30 AM right now and for the last 2.5 hours I’ve been glued to the computer, glassy-eyed and claustrophobic, trying to work on grad school applications (deadlines are coming up way too fast). I really do want to go back to school; I’ve wanted to go back for three years or so but haven’t been able to get my act together to actually do it. I applied to two programs at the University of Minnesota two years ago, in a huge messy rush, and got rejected. I also applied twice to a Master’s program in Berlin at Humboldt University; the most recent rejection happened just this May. Throw in an application for a Rotary Ambassadorial Scholarship too, also denied. I did get accepted to a Master’s program at Queen’s University in Belfast in 2004, but I had to decline it because of a freak arthritis flare-up with my eyes.

Oh, pity pity woe is me, right? I know, stop being a baby. But as I sit here feeling like someone is digging sharp knives into both ankles and that maybe another evil person just finished smashing every inch of my body with a lead baseball bat – I do wonder sometimes if I would be having such trouble trying to move on with my life and getting my shit together if I were healthy and arthritis-free. Is the RA to blame for any of these frustrations and failures or is it all me?

Testing, testing

This is my new rheumatoid arthritis blog. Arthritis, hooray! Doesn’t that sound exciting? Don’t worry, I won’t only be writing about my orthopedic shoes and how I have trouble getting out of the bathtub. Oh no, there’s so much more.