Prednisone free!

March 15, 2015

I’ve been off of prednisone for THREE DAYS now! Whooo!

Three days isn’t long, but it’s exciting nonetheless. Let’s hope I can continue to stay off of it.

Goodbye, chubby round face. Goodbye, neck lump. Goodbye, anxiety and mood swings. Goodbye, bone damage.

GOODBYE!

I don’t want to

March 4, 2015

I don’t want to have to get dressed and go out into frigid 7 degree weather now just to pick up a new Vicodin prescription when I’m not feeling well. But, I have to. Remember the good old days (before October) when your doctor could just call in the prescription to your pharmacy? Those days are dead. And I’m really crabby about it. I’m also annoyed by how inconvenient it is to drive and park at my clinic; it’s not a quick and easy trip. It’s a huge hassle. I hope a cup of coffee can give me a little burst of energy to leave the house.

In addition to the daily RA maladies, I’ve been sick with an upper respiratory virus thing since last Thursday–coughing, choking on snot, head about to explode, etc. So I REALLY do not want to have to drive all the way over to the clinic just to physically pick up this piece of paper.

I am thankful that I’m able to even have access to pain medication when many people in my situation aren’t so lucky. All right, I’ll shut up now so I can go get my meds and hopefully do something productive today that isn’t related to managing my health, since I did stay home from work.

But, I really don’t want to move.

Anemia and fatigue

March 4, 2015

I just found out that my hemoglobin level is low again (9). This could explain some things. Like, how I’ve been feeling so dragged-down tired all the time. But it’s often so hard to know what the source of the fatigue is. RA? Sinus problems? Lack of sleep? Depression? Anemia? Pain? Stress? ALL?

So, I’m back popping the iron pills. I hope this helps some.

Health “care”

February 13, 2015

I just want to say…I really love giving all of my money to Fairview Health Services for my primary care. I mean, they deserve it. They always answer the phone right away and get me in for appointments quickly. They are so fast and efficient at RETURNING phone calls too, it’s amazing. I never have to call multiple times and repeat myself to several different customer service representatives/nurses/who-the-hell-knows-who-I’m-even-talking-to. No, of course not. If I call and leave a message for a nurse to call me back, she doesn’t forget me and ignore my message(s) and then never return my call until I have to call again, repeatedly taking up more time and effort and energy from my day(s). They are so considerate and on top of things and that’s why I happily give them large sums of my hard-earned money.

The nurses also never get any of my information wrong, like the medications I’ve had in the past, the history of my health issues, nor do they ignore the fact that I have a chronic illness–which makes primary care a bit more of a challenge than care for your “normal,” usually-healthy person. No, no–Fairview staff understand this and treat me with consideration and respect whenever I’m dealing with an additional illness or extra pain on top of living with the miserable symptoms and frustrations of RA.

So, let’s see here: I’ve had to go to my primary care clinic and urgent care 4-5 times within the last month, I think. Each visit costs me approximately $175.00 out of my pocket. I’d stop and do the math right now but it seems like a large enough amount and Fairview deserves as much as they can get for their excellent care, of course. So why even keep track? You know, I could probably start writing out insanely large checks each month or just send them my credit card to give some of their staff bonuses (especially the CEOs and Administrators) to help encourage and ensure the continuation of such personal, patient-driven, and fantastic care.

Might as well, right?

Flare

February 8, 2015

painpainpain

February, 2015

 

Pain without pain relief

February 3, 2015

I’ve been having a flare-up for the last three days or so in both feet and ankles, hands, and my right wrist. My shoulder too, I think (sometimes it’s so hard to tell which pain is which). And, in great frustration (and pain), I’m out of pain medication. Once again these new, stricter FDA regulations on narcotics are causing me additional and unnecessary suffering. And I know I’m not the only one.

So, sorry for complaining, but I think this issue needs to be talked about. I’d also like to point out that if I had easier access to pain treatment (which is obviously legitimate and not abusive), I would not be missing work this week. I’m losing. My bank account is losing. Society/the economy is losing. And my sweet kindergarten students are losing their teacher.

Here’s a good opinion piece I read today from The Boston Globe by Donald N.S. Unger:

“My Chronic Pain Isn’t A Crime”

This hits home, unfortunately.

Actemra (tocilizumab)

January 31, 2015

infusion3

Receiving my Actemra infusion, 1/26/15

 

Monday, January 26, I had my first Actemra infusion. I’m not sure how to feel or react to this, exactly. Hooray? Congrats to me? Holy shit? THIS BETTER WORK? In any case, it’s a new chapter in my RA life. Actemra is now the fifth biologic drug I’ve tried since I first began biologic injections/infusions, starting with Enbrel in autumn 2002. I can’t believe I’ve been on them that long! Luckily (I’ve been very lucky) I haven’t had problems with side effects with any of these still fairly new medications.

Before beginning Actemra on Monday, I received bi-monthly Remicade infusions for about seven years (for the second time). I had been on Remicade once before from approximately 2004-2007, then I switched to Humira injections because I moved to France briefly to teach English (my doctor and I decided it would be easier to do injections in a foreign country rather than trying to sort out getting infusions while abroad). When I returned home to Minneapolis from France, I switched to monthly infusions of Orencia, basically because I really hated giving myself shots; I never got used to doing it. I can’t remember how long I stayed on Orencia, but my rheumatologist and I decided that if I was going to stick with I.V. infusions, Remicade seemed to work a bit better for me. So after a brief time on Orencia, back to Remicade it was.

A few months ago my rheumatologist and I finally decided that it was time to change my RA treatment and try a new biologic. Remicade just didn’t seem to be working that well anymore. I was on prednisone more often than I wasn’t due to frequent and stubborn flare-ups. One of our main goals for my treatment has always been to stay off of prednisone. And now that I try to remember, I think it’s been at least a few years since I’ve been off of it consistently for more than a few months at a time.

So! While starting a new medication can be scary and worrying, I’m also trying to be hopeful and positive that Actemra will be a good turning point in helping to stabilize my RA and maybe even put me into “remission” for the first time. I’m so ready to have a good long stretch of significantly decreased pain and flares and especially a nice lengthy period of NO PREDNISONE.

I hope this works.

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