I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.
There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.
I feel like the pieces are still settling, four years later.
I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.
I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.
I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.
And then there’s kids…
I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.
When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me, With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.
The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.
Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.
Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.
Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?
To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.
I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.
In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?
First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
As a cat owner who uses the occasional muscle-relief lotion to combat arthritis pain, I was upset to read this article:
To summarize, the lotions that we use for our aches and pains, are fatal for our kitties. So if you use the lotion, don’t let your kitties lick you. If you use the lotion and then a blanket, make sure you wash the blanket after use before putting it in the same room as your kitty.
We all know those little purr-balls can help us feel better, so lets keep them safe!
Since getting diagnosed with RA, I’ve gotten two, carefully crafted tattoos. They are reminders to have hope, be positive, dream big, and stay strong.
There’s been stories out there about how healing tattoos can be for breast cancer survivors, but what about the rest of us?
I’m not about to say that tattoos are for everyone, but for me, a tattoo can be a very cathartic experience. I got my first post-RA tattoo about six months after being diagnosed. I had to get a sign-off from my doctor (and would recommend you do the same) because I was worried that the heavy doses of RA drugs I was taking at the time to suppress my immune system would make it difficult to heal.
My tattoo artist, the brilliant and beautiful Sandi Calistro, made the experience *relatively* painless. Four hours later, I had a custom compass/dreamcatcher on the side of my ribcage. A reminder to stay on the path to my dreams, my true north, despite the set backs of RA. A symbol to ward off the bad thoughts, the worry, and to keep the hope.
I recently got a second post-RA tattoo, also by Sandi. This one a quote from one of my favorite poems, Stopping by the Woods on a Snowy Evening by Robert Frost, along with an image of a fox inspired by the poem. It reminds me that I’m not giving up yet. I’m not passively floating through life.
As Robert Frost so eloquently wrote,
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep
And miles to go before I sleep.
Do you have a tattoo you got to help you heal? I’d love to see it!!
Want to mail a little hope? RA Guy is organizing an RA hope care package exchange. I think this is an awesome, beautiful idea (I’m all signed up).
Give and receive a little hope by signing up here.
Magical Thinking #1: I will find the perfect shoe
Let’s start with my favorite magical thinking first: somewhere out there, exists a perfect shoe for us RAers.
I know I’m lying to myself with this one, but the quest is never ending. I love shoes, so, even with the blisters and sore feet pads, it’s a pretty fun quest to be on.
I have two new shoes to test out in the upcoming months: Faux Fur-Lined Tom’s & Yoga Sling Sanuks. The box was waiting on my doorstep as I came home from work today and I seriously did a happy dance. Shoes! :)
So far they’re both very comfortable. I’m bringing both on an upcoming trip, so I’ll let you know how they hold up.
Magical Thinking #2: I can gargle my sore throat away
Way less fun is my sore throat that refuses to subside. It started last Friday and has progressively gotten worse, not better. Despite heaps of vitamin C, garlic, immune boosters, salt water gargling, and my ACV elixir. I was on the fence about whether to skip my Enbrel and methotrexate this week, because both are immune suppressants. My RA symptoms have definitely been more active recently, so I begrudgingly skipped the drugs. Sure enough, today they’re flaring a bit again. So much ugh, only new shoes could cheer me up (see above, yay!).
The surprisingly not awful, throat-soothing, but in no way a cure, ACV elixir recipe:
- A generous splash of organic apple cider vinegar
- A dash of cayenne pepper
- A dash of ground giner
- A heap of honey
- A squeeze of lemon
- Enough hot water to mix it up and make it palatable
Magical Thinking #3: I’m ready to start training for another marathon
It’s counter intuitive, I know. I’m sick, my RA symptoms are flaring, I just bought two new pairs of shoes and they have nothing to do with running…. But there’s something about being stuck on the couch that makes me brainstorm big goals. I’ve mapped out a 10k in May, a half marathon in July, and marathon in October.
We’ll see. The timing may change and the races may change, but I’m motivated to push myself to train for something, despite (or maybe because of) the pain!
What does it mean to be a victim? It means you feel powerless and completely out of control of your situation.
On days that your RA flares, your chronic disease rears it’s head, your cancer makes a comeback, you hurt, how do you avoid falling into the victim mindset?
For me, it’s days where my feet don’t cooperate and I fall out of bed and have to stumble around my apartment for a bit until they “warm” up. It’s days that my fingers cramp and my wrists ache so much it sucks to type or play video games. It’s days where I know exercising would help, but it sounds like the hardest thing to do.
On those days, it’s easy to want to play the victim card. Why have I been dealt this? Please take care of me. There’s nothing I can do, so I won’t do anything at all.
There are probably some benefits to being the victim every now and again. It means you’re more likely to ask for, and accept, help. It means you might take it easy. Maybe, just maybe, it means you’ll stop being so hard on yourself from taking a break (you are a victim after all).
But there’s also a whole host of negatives to letting your life or disease let you sink into a victim mentality. It makes you feel weak. I can’t play videogames because my RA is so bad. versus I need a break from videogames right now because my RA is flaring, but there’s plenty of other things I can do.
It makes you focus on the negative. My feet are so stiff, I fall out of bed in the morning. versus My treatment is working so well, it’s rare that I have these days where my feet are so stiff I fall out of bed in the morning.
It makes you angry. Why did this happen to me? What did I do to deserve this? versus Some things, like my getting RA, are out of my control, but I’m not my RA and I’m strong enough to deal with the symptoms.
It causes a spiral of depression. I can’t. Take pity on me. I need help. Why doesn’t anyone care or notice my pain? versus I’m having a bad day and could use a little extra help and support today. This is the stuff of victims. The stuff of sitting on your couch feeling sorry for yourself. This is the stuff of depression.
And depression is a BIG deal, perhaps especially for those with RA and other chronic diseases. It has been proven to worsen symptoms and those with RA have a higher chance of being depressed than those without (gee, wonder why?).
So how do you avoid being a victim?
When you’re feeling powerless, try to think of 1-3 things you do have power over. For example: I can’t control my flare causing my hands to swell and stiffen, but I can talk to my doctor about adjusting my medication, eat a diet that could help reduce swelling, and go out to a movie to distract myself.
Try to re-frame your inner dialogue. Look at the examples above. Try adding qualifiers such as “right now” to remind yourself that your situation is temporary. Remind yourself of your strength and the things that are going well.
Ask for help when you need it. Don’t just believe you deserve help and then feel sorry for yourself when you don’t get it. Tap into your network and accept support from those who love you.
Do you have any other tips for avoiding the victim mentality? I’d love to hear them!