My Dark Passenger: Fear And Rheumatoid ArthritisOct 02nd

If you watch the show Dexter you know that the protagonist always has a “dark passenger” at his side. Even when he’s doing totally mundane and innocent things the passenger whispers commands and waits to pounce on a victim. I kind of have my own dark passenger.

Don’t worry. I’m not some psychopath vigilante who chops up the bad guys and throws them into the marina. We don’t even live by a marina–my in-laws do, but that would be too much of a commute. And like I said, I don’t chop.

No, my dark passenger is still relatively new to my journey through life. New, but significant. I’m talking about my rheumatoid arthritis. I haven’t blogged about it in a while and that’s mostly because it’s been quiet. I’ve felt pretty good, not excellent, but good enough to drive my kids around, make dinner, and exercise. In other words, I have been able to be a mom. A normal mom.

I can’t say its remission. My doctor dashed that hope when he told me the erosions in my bones indicate that I’ll never experience a true remission. Oh, and Santa Claus doesn’t exist, by the way, so take this shot.

I’m not on medication right now, and that is the subject of much angst for me. You see, even if I’m feeling better right now, the arthritis is still eating me up inside. Bones will continue to erode and even other parts of my body will break down without treatment. The boring end of this story is that my medication is so expensive that just a few months used up all of my insurance package. Until the new insurance term starts, I’ll have to pay around $1300 a month for two shots. Ha.

I’ve put a seal of duct tape over my dark passenger’s mouth. He’s not allowed to whisper anything until I have secondary insurance.

It’s easy to get used to feeling good. I think we have it written into our nature to want to feel good, and I do right now. But whenever the dark passenger hints at my plight–I fall to pieces.

 I go through the checklist in a panic: Was that a spasm in my hand? Are my fingers looking swollen? Why does my knee keep popping out? Do I have a fever? Am I eating? If any one of these symptoms show up I freak out. There is just so much fear associated with the word “flare” for me.

I had a year and a half of horrible pain and multiple surgeries. The memory alone scares the beejeezus out of me. Because it’s not just the pain–it’s the depression that goes along with it.

I whimper like a puppy who was released from his kennel and then has to go back inside. It’s not fun to go back to that kennel once you’ve experienced freedom. The walls are more claustrophobic, the cage more ominous.

Is a new flare starting? I don’t know. I don’t think so, but who am I to say? All I know is that I have this dark passenger that will sit next to me my entire life. Sometimes he’ll just whisper, other times he’ll yell. And I’ll wish I did live close to a marina to drop his sorry ass into the water and be free of him forever.

Of course, I can’t do that because the “ass” is merely a metaphor. Instead I just pray and have a bunch of other people pray.

Do you have a dark passenger? Do you struggle with fear?

[This is my theme song for my RA. It pretty much sums up the struggle and the victory.]


28 Responses to My Dark Passenger: Fear And Rheumatoid ArthritisOct 02nd

  1. hilljean October 2, 2012 at 5:13 pm #

    I have asymmetrical psoriatic arthritis, but thankfully, it is not degenerative at this time. The fact that it can become so at any point sits like a ticking bomb in my mind. And the prospect that I'll wake up tomorrow morning with a flare up and not be able to walk or type because of the swelling and the pain…The wondering if the stiffness is due to normal stiffness for me or foretells another episode…I understand your post completely.

    I've chosen, since mine is rather mild right now, to avoid medication. I have an extensive exercise and diet routine I'm to follow, which I try to do every day, adn that's helped dramatically. I just don't know who long it will keep the disease at bay.

  2. hilljean October 2, 2012 at 5:31 pm #

    I have arthritis in my back and it has wreaked havoc on my life since last Dec. I have not experienced the depths of pain that you have, but I can totally identify with your story of pain.
    Tell Matt that he needs to give you more massages or something to help distract you (if ever so slightly) from the Dark Passenger…speaking of which, I hope you and Matt watched the season premier of Dexter….it was a WOW – HOLY CRAP-OLA episode

  3. hilljean October 3, 2012 at 2:51 pm #

    ToTALLY watched Dexter. I am so excited about the direction the show is going. I think this is gonna really shake things up!

  4. hilljean October 3, 2012 at 2:52 pm #

    Oh, I am so sorry. I know all about that, and have friends with it. I am really wanting to get my diet in control. I've tried a couple of times and failed. I'd like to hear about your exercise routine. I've been exercising and it helps as well, but I don't know if I'm doing it right :/

  5. hilljean October 3, 2012 at 3:18 pm #

    I, too, have rheumatoid arthritis. I know what you are going through. It is shameful that we have a healthcare system more interested in profits than the well-being of a person. No one should be without the care they need, it is not moral or civilized. Oops, getting on my soapbox. I'll keep you in my thoughts.

  6. hilljean October 3, 2012 at 3:40 pm #

    I was diagnosed with Polycythemia Vera and Essential Thrombocythemia this year. One is an elevated red cell count, the other platelets gone wild. Even though I have my good days – with energy, the days of no energy and waking up from one nap looking forward to the next are never far from the surface. People look at me and tell me I am looking good and follow that up with you must be doing better. No – I'm just having a good and my numbers have increased significantly in the last three months. My body is also attacking from the inside out and people have a difficult time computing that thought. Every time my hands go numb or a foot falls asleep – I panic with night (day) mares of amputations. It's difficult living with a silent killer/mutilator. Then, I also have arthritis in my hands. My thoughts and prayers are with you.

  7. hilljean October 3, 2012 at 3:40 pm #

    So, I've been told my exercise routine should revolve around: yoga, swimming, walking, and LIGHT weight lifting. I also work on my old ballet barre exercises, since they are not very strenuous, but work on flexibility and core training. I have to really focus on my abdominal core muscles, to help my posture and lower back (lots of people with PA have problems with their lower back, and I sit at a desk all day). I'm supposed to get up and move at least five minutes every hour to hour and half to keep my joints from getting stiff. I've also been told that I must make sure to work out when I'm warm, and not cold– so no walking outside in the winter– as cold tend to aggravate the joints. I've been told that I am NOT to run, or do aerobics or anything else that could be considered moderate to high impact.

    All of this to say that I walk for about 30 minutes three times a week (which is two miles or so for me each time), do yoga/ballet/stretching and calisthenics a couple times a week, and either swim or lift weights once per week (when my kid is at his swim practice at the rec center). I want to stress that I had to work up to this level (about 4 hours of exercise per week) over the course of two years. It's really slow going, but makes me feel so much better!

  8. hilljean October 3, 2012 at 5:32 pm #

    Oh I am so sorry about your diagnosis 🙁 Living with an invisible disease is truly a thorn in the flesh. People always say, “but you look great!” as if that's enough.

    I am not familiar with your disease, but are amputations a common result?

  9. hilljean October 3, 2012 at 5:33 pm #

    Ha. Don't worry, I'll gladly share that soapbox with you! Where does the RA affect you most?

  10. hilljean October 3, 2012 at 5:35 pm #

    Thank you so much for all of this info! I had started running a little bit and I'm really not sure if it's what I should be doing. I need to research it more. My tendons in my knee slip all the time so I can only run on a good knee day, and not for very long. I've heard swimming is fabulous for RA but I am a terrible swimmer! I like your approach to the routine–it sounds manageable and enjoyable. Thank you for getting back to me!

  11. hilljean October 4, 2012 at 6:38 am #

    Oh girl, that sucks. I'm so sorry you have to live with that kind of pain. My friend was recently diagnosed with lupus and I can literally see her wilting throughout the day as the pain sets in. It makes me so angry when things like this take over our bodies and rob us of the life we want to live. I'll be praying for you!

  12. hilljean October 4, 2012 at 5:12 pm #

    Thank you, Sarcasm Goddess! I am so sorry for your friend. Lupus is absolutely horrible. The best thing you can do for her is understand that even when she seems fine, she's probably not. Lots of prayers and lots of hugs go a long way 🙂

  13. hilljean October 5, 2012 at 2:07 am #

    What a way to explain it! I think we all have something we struggle with that goes alongside us.

  14. hilljean October 5, 2012 at 10:27 pm #

    Thank you! Yes, no one escapes a thorn in the flesh. It's what makes us better people–but it sure is rough.

  15. Laurie October 28, 2012 at 4:20 am #

    I was directed to your blog through a post on Pinterest. I happened to look at the top of your blog and saw the words rheumatoid arthritis. I was diagnosed over 10 years ago (in my early 20’s). It went into remission for about 7 years and reared it’s ugly head again about a year and a half ago. I am terrified of being on meds for it. I was on methotrexate in the beginning and it was awful. Two weeks ago I actually cut out all gluten, most refined sugar, and nightshade vegetables (potatoes, tomatoes, peppers to name a few) and it has helped so far!! I am with you. I have that fear too. I have two little girls and I want them to remember how much fun we have and how much I so completely love them – I don’t want RA to take away the joy and control my life.

    • hillary October 29, 2012 at 6:16 pm #

      Oh I am so sorry! Methotrexate is the WORST. I honestly saw no results with it–just a bunch of terrible side effects. I’ve heard about good results with cutting out the nightshades. I need to try that.

      Don’t let RA rob your joy! That is the biggest thing it takes from my life and I refuse to let it do that anymore!

  16. Sarah Moore November 18, 2012 at 11:49 pm #

    I stumbled upon your blog via Pinterest and also had RA catch my eye. I am 31 and have also struggled with RA for 4 years which included a few years of trying to get pregnant which meant no medication was an option. It is a terrible disease especially for us young moms who need to hold and care for their babies. I enjoyed your posts. They were real and I could totally relate. I too get some pain relief from eating well but was cautioned by my rheumatologist that the disease is still there and the joint damage still continues so it is important to pair diet changes with medicinal treatment. I was on Enbrel for a year or two after having my daughter ( and before trying for baby 2) and it was amazing! Totally put me in remission! Although its $1,800 if u don’t have insurance which no one can afford! I still pray for a cure everyday. I’m also thankful like you it’s not a death sentence like cancer but it is a lifelong battle that simply sucks. Anyway I enjoyed reading your posts and knowing I am not the only young mom going thru it.

    • hillary November 19, 2012 at 2:47 am #

      Yes! You are not alone! So are you still on Enbrel? I just switched insurance and am trying to get back on the Humira. That really helped but I used up all my insurance money and was gonna have to pay $2000 for a month’s worth. So yah. haven’t been on anything in a while! Where does the RA affect you most?

  17. alison December 8, 2012 at 9:57 pm #

    I too am a young mom with RA and on ebrel. I have a card from the enbrel manufacturers that pays most of my co-pay. As far as I know, the only requirements are that you don’t get any financial assistance for your meds through the government (medicare, medicaid, VA). So my co-pay is $10 per month for four injections (one a week). Might be worth checking out: Best to you!

    • hillary December 9, 2012 at 2:54 am #

      Thank you! Yes, I had the Humira protection plan but it got all used up 🙁 I’ll look into the Enbrel one. How do you like Enbrel? Have you been on anything else?

  18. Polominx January 21, 2013 at 11:52 pm #

    Hi, just found your board and am so reassured that I’m not the only ‘young’ person to have RA. I got diagnosed with it in June last year after suffering months of pain. I have a toddler and it was so difficult to interact with her when I couldn’t get down to her level to engage with her. I have felt great since getting my shoulders and knees injected, although, I also take Methotrexate weekly and thankfully have been okay with it.
    I only hope that catching and getting treated relatively quickly that I will have a quality relationship with my daughter and be able to enjoy many of the mummy and daughter dates that you have suggested.
    Good luck and take care x 🙂

    • hillary January 22, 2013 at 5:40 am #

      I am so sorry for you! You are not alone. There are a lot of us young RAers. Hang in there. I’m going to try to post more about RA in the future!

  19. Angi Whittiker January 28, 2013 at 8:20 pm #

    I also suffer from RA and several other connective tissue problems… I don’t however call them diseases! I was raised in a healthy home and basically a organic ‘almost’ vegetarian into my mid 20’s. When I moved to the midwest my eating habits got lax for a variety of reasons. I had my 1st and only child @ 40 and just simply never recovered! As I stripped everything out of my life (prepackaged food, eating out, etc)… I realized I had been battling symptoms of this disease for a long time!… to make a long story a little shorter :)…. as soon I went back to eating organic, whole food… single ingredient foods and then adjusting my proteins, carbs and fats to my body type, my RA is in remission, all others connective tissue disorders (that I was about to have surgery on this year) are now almost gone. I have created an exercise routine for myself to strengthen and lengthen my muscles.. with yoga, ballet, pilates, karate, tai chi, etc and have even corrected chronic back problems. I had shrunk an inch and now I have gained it back! My advice is.. .only you know you body, spend time with it and God and you can heal yourself of these disorders! God Bless you!

    • hillary January 28, 2013 at 10:49 pm #

      Wow! That is truly inspiring! Thank you so much for sharing.

  20. Cryssi June 10, 2013 at 4:15 pm #

    Hi, I was just introduced to your blog, so bear with me while I comment on older posts.

    I’ve found my immune system sucks, to put it simply. I’ve had scalp psoriasis since I was young. I was diagnosed with ulcerative colitis at 31. Recently, I was diagnosed with arthritis. I’m still waiting on an exact ‘arthritis’ diagnosis. It seems autoimmune disorders are going to crop up periodically for me.

    I have found that cutting out pre-packaged and processed foods, as well as regular exercise, have helped with symptoms of all of the above. While I take medication for my arthritis symptoms (as I have a very labor intensive job), I no longer take medication for the colitis. It seems my diet and exercise routine has helped manage the symptoms. I still have flare ups, but they’re not near as bad as when I was first diagnosed. I do worry every day when one of my ‘dark passengers’ will decide to take a turn for the worst.

    My oldest child has eczema and, while it’s technically classified as an allergic reaction, his doctor calls it an autoimmune disorder. So, now I worry about him and what he’ll face as he gets older.

  21. Lynda January 12, 2015 at 10:36 am #

    Im 29 and I got diagnosed with RA when I was 26. Aside from my initial pain when I was in the ER because even my eye lashes hurt…it had been in remission I guess. However, this summer it decided to come back from its sabbatical. You are not alone!!!! There’s a saying “RA will make strangers out of your family and friends and make complete strangers your family” Blogs like this make me believe it. Your friends and family can “only imagine” while us strangers know exactly how you feel… Thank you for this blog!!!

  22. Taylor January 23, 2015 at 4:10 pm #

    I too have RA. I was diagnosed when I was 8 and now being a 23yr old am just beginning to understand what it means. I always knew I had it but as an adult I dlnow realize how much it really effects every aspect of my life. I love that you call it your ” Dark passenger”. Love this article.


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