Invisible Pain, It’s the Real Deal

I used to enjoy the couple weeks of intense monsoon weather during the summer. Not the booming thunder (one of my puppies is terrified of it), heat, or the stickiness but rather the rainfall and the lightning lighting up the skies. It’s rad! But this summer has been one big monsoon. Each storm forces an intense game of tug of war between my bones and it feels constant. I look completely normal. My joints are rarely swollen, I don’t have any sign of deformities, or even arthritis. It’s amazing that something can make me so miserable and be entirely invisible. Though I have been validated by my doctors and corresponding heavy treatments, I still feel like it is unreal sometimes.

Saturday evening is my weekly date with methotrexate. It’s an important and unromantic date that brings feelings of both relief and dread. I have plowed through the hangovers it brings and have gotten used to the two days following. It’s really not bad like it used to be. I’m amazed at how I have adjusted both mentally and physically.

Though I have adjusted things are far from perfect. My theory is Methotrexate and Humira wear out and therefore my roughest days usually occur near my next dosage. On top of that there have been thunderstorms, of course. In the past I could be found obsessing about why I hurt… overdoing it, weather, stress, poor sleep, and ugh. Honestly, I am exhausted at the thought of why I hurt. Does it matter? It’s not within my control. I cannot make it stop. I cannot use Chi, positive thinking, or wish it away. Even eating heathy and medications can only do so much. Sunday this all became evident, once again.

My husband is often my pain medication through massage. He spent his entire Sunday rubbing my feet, ankles (or as I have dubbed fankles), knees, lower/middle/upper back, shoulders, elbows, and staying far away from my hands and hips. Even a bump sent me into a frenzy. Often, it hurts more when he gently rubs but I still prefer it. It hurts so good? No, not really.

Monday he was back to work and I was worse off. I slept terrible and felt sick and frustrated. I broke my rule of never crying alone and wept uncontrollably for awhile. I’m not so sure it was a rule but rather an impossible task. Amidst my tears I felt confused, it wasn’t because the pain was at its worst. It wasn’t a ten. I still don’t know why I fell into a solo pity party but, have to admit it felt relieving. Shortly after without much consideration I popped a Tramadol and watched Maya Angelou on OWN’s Super Soul Sunday that I recorded. I’ve never read “I Know Why the Caged Bird Sings,” and I found it to be rather absurd. I turned off the boob-tube (before it further boobified me), downloaded the book for under $6, put on a soothing album called Lang: Death Speaks by Bryce Dessner (which I just now realize sounds creepy, dramatic, and gothic but I promise it’s beautiful. One of my fav singers Shara Worden of My Brightest Diamond is the vocalist.), laid still, and began reading on my Kindle app. The pain was still going strong but, I found peace in a dark place. Maybe it wasn’t so dark after all.

I thoughtfully took a Tramadol before bed. I had never taken two pills consecutively and it felt like a big deal. I didn’t really sleep. I had the sensation like I was falling over and over and calmed myself with a reminder the medication said it could cause dizziness right on the bottle. Still sleep was impossible. I kept the Don Miguel Ruiz episode of Super Soul Sunday on my DVR and put it on to soothe me. When it ended, I put it on again. I could hear it though I wasn’t really listening. I stared at the ceiling focusing on its stillness. At around 4am, I was extremely nauseous and vomited shortly after. Vomiting is awful in itself but adding painful joints into the equation makes the experience more dreadful. My ribs were especially frustrated.

Here’s Tramadol for pain relief. It’s safe and non-addictive. Wow, thanks! It’s like a cruel joke. I greatly dislike pain medications and for that reason rarely partake in them. It’s only when the pain is mind numbing and maddening that I give into chemical help. I believe I was given the lowest dose and frequency of Tramadol, at least that’s what Google found. The pain relief it gave me was very minimal and in the end it made me feel worse. Is there anything out there that can give me relief without the grief? I understand with more frequent use the body gets more tolerant as it has with Methotrexate/Humira. My poor body. It shouldn’t have to become tolerant of anything else. Once again, I’ll bring this to the attention of my doctor. Maybe there is something else? For now I’ll manage with my somewhat effective methods: massage, stillness, reading, aromatherapy, and music.

Some days I pretend I am my normal energetic self and galavant around. People say I look great and on some levels I feel great too. I’m a lover of life and those things living. But it’s invisible even to me when I look in the mirror. I get tired of being sick. I get tired of talking about being sick. I feel like a broken record. But, the truth is I am sick. It’s always there. That healthy looking person in the mirror is sick. And it’s okay. It’s okay for it to be real. It’s not shameful. It’s okay to exist as I am. This disease and pain may be invisible but it’s the real deal. I’m a lifelong learner and RA is just another one of my great teachers.

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6 comments

  1. You have expressed this so well! My liver is very sensitive and even a couple of ibuprophen will send my test results spiking. So when the pain comes crawling upon me I have to resort to warm showers and my microwaved-heated rice bags. Biologic meds have kept my disease under enough control that I have just a couple of flares a year. That I can handle because I know it will lessen. Your husband is a keeper!

    • Thank you for reading! I haven’t tried rice bags. Any brand suggestions? I’m sorry to hear about your liver, that’s frightening. I’m a huge fan of warm or hot showers as well. Sometimes I wish I could just stay there all day! I’m happy to hear Biologics help you, somewhat. What are you taking? And you’re absolutely right, my husband is amazing! 🙂

      • I took Enbrel for 2 1/2 yrs until it started to lose effectiveness. Now I’m on Humira and it has done fantastic so far. I was on MTX for 10 years. Every time they increased my dosage above 3 pills a day, I would bump some nodules. Bad places like the bottom of my heel, outsides of my feet, and on fingers of my right hand. So we would back off and I wouldn’t get any more until the next time they tried increasing it. So finally my RA doctor listened to me and took me off MTX. Within 3 months all of my nodules went away! I can wear any shoes I want now. She said MTX can cause nodule activity in some people. Well, Duh!

        As for the rice bags, I bought mine at WalMart. I’m sure any big pharmacy would have them. I have a special one I bought from QVC television that is a capelet that goes around my shoulders and up the neck in the back. I don’t know what I’ll do when it dies. lol I’ve never seen another like it. Once in a pinch I took an old cotton sweat sock and put some rice in it, tied the end in a knot, and used it. It helps with that one to put a damp cloth around it to warm it up (about 1 min in my 1300W microwave). It doesn’t scorch that way.

      • Wow! I had no idea MTX could do that either. That’s awful! I’m glad they cleared up for you! I’m on 8 pills (20mg) and it has brought me the biggest relief. Honestly, I’m afraid to ever not be on it. I think Humira has helped very slightly. I’ve been on it for about 8-9 months. I was actually thinking of seeing my doctor to see if it’s time to try something new again. I’m not sure if I should just wait it out. I need to keep a more strict journal!

        Thanks for the advice on the rice bags! I’ll definitely be checking them out soon. I feel silly for not looking into them before. I’ll also be on the lookout for one like you got on QVC- that sounds amazing. My neck is some of the worst for pain. Though everything is now! Ugh!

      • I would think if you haven’t had good enough results after as long as you’ve been on Humira, you should ask the doctor about it. If the biologics are working correctly, you should be able to (mostly) forget you have RA. With Enbrel I was 90% after the first 2 months, and with the Humira it was 1 month and the pain fog lifted. A journal would be a good idea for me, too, so now that I’m at the end of the 2 yr mark I can keep track of how Humira continues to work. I’m so glad to talk to you! I don’t know a single other person with RA.

      • Thanks for the great advice! I can’t say I have had a dramatic change like you describe. It gives me hope! I’m very happy to talk to you too! My dad has RA but we talk only occasionally- he’s to himself- other than that I don’t know anyone else with RA either. It can be lonely!


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