I am in a weird/horrible mood right now. I am flared up (I think) because my energy levels are low, my brain is on neutral and I feel like I’m trudging through a mud puddle that sits neck high.
Usually, when I’m flared up, I just want to sleep. Unfortunately, today is not one of those days.
I have an abundance of energy coursing through my body. I have intense cabin fever but my body won’t cooperate!! I feel sick every time I move but I just want to take Mocha for a long walk. She is so playful today that a long hike suits her. But, I can’t comply.
It’s not even the flare. It’s the cold weather! I have a couple of weeks off from work and I have ample time to spend with the puppy but today, the temperature plummeted. I can’t exercise in the cold even if I were in good shape.
I have more or less come to terms with my illness and that I cannot do certain things anymore. But, every so often I am just too annoyed for words. I love being active…Why can’t I be active??
“I heard exercising cures RA. You should just do more of that!”
And I heard if you shove your head far enough up your ass you can see your stomach!…
Okay, so that is a little harsh. But…not really.
If you do not live with chronic pain or a physically disabling autoimmune you can’t imagine what it feels like. You can’t google Rheumatoid Arthritis and immediately understand what it means to have it. You don’t know, well, until you know!
Long ago I stopped giving people the benefit of the doubt. Many say I’m too severe and expect too little of them. But what I’ve learned is people just want to sound intelligent. They love to sound like they know what they’re talking about. It’s human nature to be superior. Lao Tzu, the founder of Taoism, once said “Those who know don’t talk. Those who talk don’t know”. The above statement is a prime example of this.
I realized that when people talk it is not because they care but so they feel better about themselves. They think that if they look up a few facts on the internet, regurgitate the information I give them, they sound caring. In reality, they just annoy me.
Yes, you’re partially right. Exercise does alleviate symptoms of RA, however, too much of it can have the opposite affect and do more damage than good. Why? Too much motion and repetitive motion exacerbates inflammation around the joints, causes the immune system to react and attack. I probably don’t have to mention that there is no cure for the keyword: chronic autoimmune condition. So, no, I can’t just exercise the RA away but, gee, thanks for trying.
It has been one of those weeks. I was unmotivated, lethargic, but extremely restless. Half the time, I tried one of the many nail ideas flitting through my head but none of them looked right; the other half I just couldn’t bring myself to even try. Do you ever have those days? Weeks? Months, maybe? I wouldn’t call it depression, I thought it was more of a flare. My eyes were more dry than usual, the skin on my lips flaked off and I was uncharacteristically fatigued (even though my joint pain was minimal).
Regardless, I sat down and pushed through this strange phase and went with a quick, RA-friendly waterfall look. I had no particular feelings for this nail art (ah, motivation) but I did like how it came out. I hope you do too!
This post was inspired by an article I read on RheumatoidArthritis.net. I cannot believe I haven’t yet written about my experiences with prednisone as (no joke) the only sentence that comes out of my mouth on a daily basis is “it’s the prednisone”. The article is linked here.
Anxiety attacks? Blame it on the prednisone.
Depression? Blame it on the prednisone.
Paranoia? Blame it on the prednisone!
And it begins…
More often than not I curse my reliance on prednisone. It is the first medication I ever took for Rheumatoid Arthritis. During my first flare I could not get out of bed yet this little bitter-tasting pill at a hefty 15mg dose took down inflammation in three days. Who knew how long I would have been bed-ridden without it.
A little pill taken once a day that nicks inflammation at the source? Sign me up!…Oh wait…The list of side-effects is miles long and more often than not I confuse RA symptoms with prednisone side-effects. I am one of the few who takes prednisone daily and will continue to do so for the rest of my life. This means I have no choice but to weather the good and bad that comes with this “magic” medicine.
I experimented with different doses which ranged from 8mg to 15mg over the past four years. It was the most effective drug I took. I loved it. I hated it even more. I increased as needed and decreased at a snail pace.
Prednisone is a funny little drug. Its human dependancy rivals that of addictive designer drugs. Prednisone messes with the brain. I can experience moments of inexplicable rage and others of intense sadness; feelings I have never experienced at such magnitude. Forget a dose. Forget about it. I do not recognize myself (not to mention the havoc it wreaks on vital organs).
For my own sanity (and the safety of others) I rarely increase above 12mg.
Insomnia? It’s the prednisone.
Bitter taste but intense hunger?
Do you see a pattern?
I tolerate a 10mg daily dose well. A year ago I was on 11 and today I am currently attempting 9. Around eight months ago I tried 9mg and experienced what I can only image was withdrawal and a strange swelling sensation in my spine. Okay, Prednisone, you had me at 10mg.
The higher the dose the worse the side effect. Three years ago when I experienced a bad flare I quickly increased to 13mg per my doctor’s instruction; with it, I experienced my first ever panic attack. I curled up in a ball whimpering with tears running down my face. I had never experience such anxiety and paranoia. My nerves were on fire and I could not get out of my own head. My four pets tried to sleep with me and I couldn’t share the bed. I shooed them from my bedroom where they stood guard at the door. They couldn’t stay in the room because the walls closed in on me.
Weight gain? Blame it on the prednisone.
What else could it be?
Whenever I increase the prednisone I experience severe bloating and intense hunger. My appetite increases and with it so does bloating of my face and belly which I have fondly (read: not so fondly) nickname “pred belly”. Within the last six months I gained 12 pounds in my face, stomach and thighs and in most photographs I sported a double chin. I felt larger than life and annoyed at the self-esteem I never thought about but thankfully once I lowered the prednisone dose and started exercising again I shed the excess and looked/felt myself again.
Even with all these grievances, though, would I stop the prednisone? That is the million dollar question and as I type it out I realize I do not know the answer. Yes! Because the cons run longer than pros and No! Because no other medication quite compares.
I am off the Actemra and back on the Orencia. On non-work days I felt okay. Unfortunately, on my work days I might as well have not been on anything at all! No. That didn’t work for me. While I was on the Orencia I was at least functional and…active! It is almost the end of July and I have only been out to work. My favorite season is almost over and I haven’t enjoyed it once. The actual eff??
On the flip side, the Orencia obviously did not work well enough. It got me through part time work and some full day schedules. I rarely had to increase the prednisone and I certainly never had to use a walker or cane but, the moment there was excessive stress (read: nursing a dying dog) it quit on me. There was no way I could keep a regular full-time schedule on this medication.
There are a couple of meds I have not tried but my doctor is dead set against me on them. I trust his judgement and from my knowledge of them I am not too keen on trying them either! So, what next? There are new RA medications on the market every year but, at the moment, we have exhausted our options. My rheumatologist referred me to one who specializes in clinical trials.
Yes. Clinical trails.
I thought those only existed in movies. Hah, just kidding!…but I think you know what I mean…I never imagined I would consider a clinical trial for ANYTHING.
I have my first appointment at the end of this month so I guess we will find out what the following steps are…I don’t even know what is in store for me!
Until then, and in case I do not qualify for any trials, I am back on the Orencia. I had my first infusion today so I expect to feel a lot better tomorrow! Fingers crossed!
Why is it whenever I think about circles I immediately jump to the 1985 song “You Spin Me Round (Like a Record)”?
Storytime: My first encounter with this song was actually a vacuum commercial that aired during I Love Lucy re-runs!
What has me thinking about circles? This endless loop of fatigue and insomnia. How are those related? If I am so exhausted shouldn’t I sleep more soundly at night? If only life was that easy! I tend to suffer more insomnia the more flared I am.
Whenever I switched medications I suffered from bouts of insomnia. I would flare up during the periods when the old biologic wore off and the new one had yet to kick in. I became less physically active and found it more difficult to fall asleep at night. I eliminated the more physical activities like climbing, or shopping in actual stores. Errand were spread out over days and I spent most of my time laying down and resting. I was just too flared (from pain or fatigue) to keep them in my daily routine.
When I was in a good place with my medications (especially while on the Orencia) I was more active, happier, “healthier” and as a result, slept better. I climbed, I shopped, I lived! As a result, my sleep hygiene was fantastic.
If you read my recent post detailing my “progress” on Actemra, this month, you will remember as the medication wore off, so did my energy levels. I was uncharacteristically tired, run down and list-less (like the I Love Lucy reference?)
All I wanted to do during the day was take naps. I wanted to lay down on my bed and stay there. By the evening, I was so exhausted I wanted to go to bed early and I fell asleep quickly. Until a few minutes later when I was just as awake as though it was morning. Cue the insomnia. If I was so exhausted shouldn’t I sleep better??
I spent a long time thinking about this (as seconds blinked by and minutes turned into hours) and I realized this made perfect sense.
When my medications work I have energy. I work, I climb, I go out with friends, I play with my dog, and I chase my cats. I am happier, healthier, and more active.
Research shows that the less the body “exercises”, both physically and mentally, the less likely it will obtain a good night’s rest. Activity stimulates the body and tires it. When your brain and body feel fatigued, it is easier for them to fall into the natural sleep cycle and stay there.
The lack of response to the new Actemra infusion means I am less physically active. Okay, so, work your brain, Monica! This makes me sound somewhat like a moron, doesn’t it? Don’t get me wrong, I read, I love reading; I do my Sudoku, I secretly love crosswords, I blog, I color, I paint my nails, I craft…but that only takes me so far. These activities do not tire my body.
You know when you’re so physically exhausted you lay down and pass out? You’re asleep the minute your head hits the pillow. Your body slows down the internal processes and you recharge.
I am not getting that. My body is at rest all day. I generally sit or recline while I do all of the above activities. As far as my body knows I am already recharging. When I get to bedtime my body does not think I need anymore rest so I toss and turn most of the night.
What a blasted cycle, huh?
And, because this music video is hilarious…I give you the 80’s hit: