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.]
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.
ReplyDeleteI'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.
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.
ReplyDeleteTell 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
ToTALLY watched Dexter. I am so excited about the direction the show is going. I think this is gonna really shake things up!
ReplyDeleteOh, 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 :/
ReplyDeleteI, 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.
ReplyDeleteI 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.
ReplyDeleteSo, 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.
ReplyDeleteAll 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!
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.
ReplyDeleteI am not familiar with your disease, but are amputations a common result?
Ha. Don't worry, I'll gladly share that soapbox with you! Where does the RA affect you most?
ReplyDeleteThank 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!
ReplyDeleteOh 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!
ReplyDeleteThank 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 :)
ReplyDeleteWhat a way to explain it! I think we all have something we struggle with that goes alongside us.
ReplyDeleteThank you! Yes, no one escapes a thorn in the flesh. It's what makes us better people--but it sure is rough.
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