Oh man, I’ve been neglecting this blog! Sorry guys. There’s nothing like that three month rheumatologist appointment to remind me to get writing!
I’ve been thinking a lot about the journey I’ve been on with my RA. I went from the fear that came with diagnosis, to dogmatic hope and determination that I could get rid of said pesky diagnosis, to bleak acceptance, to a sort of new normal.
That new normal is what I want to talk about. I think it probably looks different for everybody.
But, at any rate, here’s what my new normal means for me:
- it means I normally operate with an acceptance of my disease – it’s chronic, it’s painful, it ebbs and flows
- it means I still hold onto the hope that better scientific research may lead to better treatments and possibly a cure
- it means that I constantly remind myself that “chronic” is just a word. Diseases change and even chronic ones may go away
- it means that I am almost ALWAYS uncomfortably aware of my body. At moments when I want to focus, my feet are screaming (like recently standing during the funeral of a friend…I wanted to be focused and be there for all the people who loved him, but there were my inflamed feet, in pain and begging for my attention). At moments when I want to be serene and zen (like in yoga classes when my wrists are acting up).
- it means that some mornings my feet and hands don’t work the way they should. They’re frozen, sore, and just not ready to start the day
- it means feeling that I’m constantly balancing the desire for understanding with the desire to not burden others by complaining. Usually I stay quiet.
- it means I have a new relationship with some powerful drugs. Drugs with life-changing results and uncomfortable side effects
- it means I am a whole lot more patient with myself and others
- it means that not a day goes by when I’m not grateful for my body, my mind, my life and my loved ones
What does your new normal mean for you?
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!
Mine hit me right around the time that my Raynaud’s decided to show it’s full colors (no really, my hands were fantastic colors of red, white and purple). Why? Probably because I was 14 and my hormones were raging.
Whatever reason, come awkward adolescence my hands began to shake. It was worsened when trying to hold something, particularly something that was either extraordinarily delicate or scalding. It was made even worse when there was an audience or I was nervous or embarrassed. As you can imagine, class presentations were my worst nightmare.
And needless to say, awkward adolescence just got a whole lot worse…
On really bad days my head would try to shake itself off my neck. But mostly, it was my hands, with their omnipresent jitter.
Unlike when I was diagnosed with Rheumatoid Arthritis, I knew exactly what I was in for. About half the aunts and uncles on my mom’s side have these same shakes. In fact, many people around the world do. It’s called an Essential Tremor and it can cause your hands, head or voice to shake. We don’t know why and we don’t have a cure (sound familiar?).
One aunt has a particularly bad rendition – her head never pausing. So I was filled with a sense of dread and acceptance when I noticed them in myself; I was one of the unlucky ones, stuck with the shakes and destined to have it for the rest of my life.
To my surprise, by age 16 my Familial Essential Tremor had all but disappeared. Occasionally my hands would shake a bit when I was especially nervous, but it was nothing compared to what it had been a few years earlier. People stopped pointing it out. I was ecstatic.
It’s basically been a non-issue since then. But now suddenly, at the age of 31, I seem to be a bit shakier. It’s not bad enough that it’s affecting my head, but it’s been bad enough to spill hot coffee while pouring, to have people comment and stare yet again, and for me to have flashbacks back to those rough adolescent years.
Like RA and Raynaud’s Phenomenon, there is no cure for an essential tremor. It’s just … a condition. A genetic mutation, according to the Mayo Clinic.
So, what can I do? Well, avoid caffeine, alcohol and stressful situations, for starters. But, since that’s not going to happen for me right now, I’m sticking to hoping that it’ll mysteriously disappear, the reaction to a 30-something’s hormone cycle, like it did when I was 16.
The hardest thing for people to understand about RA is the ebbs and flows of fatigue and pain symptoms. One moment, I can be so tired I’m unable to move from the couch, every step met with sharp pain or a dull internal throb. The next, I’m hiking a 14er or doing a high altitude half marathon. I don’t blame people for being confused.
But here’s what mountains and marathons mean to me:
When I have a flare, I get depressed. Yes, I know logically that physical symptoms have nothing to do with my mental state and that I am separate from my symptoms. But not feeling like yourself or being able to do what you want to do is depressing.
I think the symptom that gets to me the most is fatigue. The all-encompassing heaviness makes me apathetic, which leads to many hours on the couch in front of the TV, which makes me depressed, which makes me more fatigued, which makes me more depressed, and on, and on. I think you get the picture.
So on days I feel good, like really good, I am jubilant. Unstoppable.
Sign me up for a 4:30am wake up call to climb three 14,000 foot mountains in one day. Upgrade me from that 10K to a half marathon.
Give me a challenge, I want to take on the world. I want to celebrate my body and all of its strength, power and agility.
ESPECIALLY because I know all too well what it feels like to have that strength, power and agility seep away. Because of that, I embrace the good and celebrate it when it comes around.
As I told my parents, I’ll take the achy, sore muscles and satisfactory tiredness of a strenuous workout over RA pain and fatigue ANY DAY. In fact, the feeling of sore muscles makes me happy because it reminds me how strong my body is.
Sometimes pushing myself like this means I “pay for it” with more symptoms later. I used to try to regulate my exertion because of that. But I’m realizing that’s not me. I’d rather go big when I can and rest when I need to than live a more regulated life (with seemingly as many random flares) somewhere in the safe zone.
Now I know I’m quite lucky to be able to climb mountains and run races. For many with RA, this is not at all a possibility. But I hope that within any limitations you have, you are able to celebrate the good days with your own version of a mountain, acknowledging all that your body still does for you.
This blogger poses the question of whether you can have it all – a successful career and family – AND RA.
It struck me because I was recently contemplating a post about the struggles of being an entrepreneur with a chronic disease.
Like many careers, founding a company is highly time-consuming, stressful and mentally taxing. All things most rheumatologists will recommend you avoid.
“Take it easy and live a less stressful life,” they’ll wisely tell you.
These doctors don’t work at a technology start-up. This is demanding work where the variables are always changing, money’s always lacking, and stress is always high.
But, hours can be somewhat flexible and you’re rarely, if ever, expected to wear heels.
I’m managing this balance of being an entrepreneur, with all the ups and downs, long hours, and uncertainty, with having RA, and all the doctor’s appointments, blood tests, drugs, brain fogs, pain, swelling, headaches and fatigue that goes with it. But add a family to the mix and I struggle to imagine it working.
Let’s hope I sell my company for a billion dollars before I settle down and have a family (hey, here’s hoping). :)
How are you balancing it “all”?
My RAD first presented itself in my wrists. Later, it moved to my feet, with a vengeance. Though it is now mostly under control with weekly methotrexate and Enbrel, I do still get the occasional flare. For me, this usually means very sore and painful wrists and feet, swelling, morning stiffness, and all-encompassing, is-this-what-having-mono-is-like fatigue.
I recently came back from an incredible two-week trip to Southeast Asia. (Side note: not needing to keep my Enbrel refrigerated was a lifesaver.) But the best part about the trip was, despite long days walking many miles (I think I hit 10 miles one day in Bangkok and probably a comparable amount at Angkor Wat), I only experienced swollen, sore feet, not a full-blown flare.
The return jet lag has been pretty rough and I think it wore my body down. I was exhausted and sleeping every chance I could get for about a week. I was finally feeling more like myself. Until Thursday.
Last Thursday, I felt the inkling that something was stewing. My feet were just a little more swollen and sore than they ought to have been. I decided to go for a short run anyway, because I’m still the worst at figuring out when to rest and when to push.
Then Friday came and my feet were so sore and stiff getting out of bed that I almost fell over. I combated it with a long shower and an outfit designed to incorporate comfortable Crocs Mary Janes, which were a half-size too big to accommodate for swelling.
Halfway through my 3/4 mile walk to the office, I felt blisters forming in addition to my already aching feet. I hobbled through.
Come lunch, I couldn’t take it anymore, so I spent my lunch break shopping for a new, more comfortable pair of shoes at a nearby store. My feet were so swollen, most the shoes in my size didn’t fit (including flip-flops!). I wound up with well-insulated Reef slip-ons.
I was invited to post-work food and drinks with co-workers, which I achingly accepted. A glass of wine did make me feel a whole lot better.
Afterward, I stubbornly wanted to have a fun night out with my boyfriend. I hung for a couple hours until I just snapped. “I’m going home,” I announced, starting to cry. Of course to him, this appeared bat shit crazy, but all I knew was that if I had to spend one more second in any sort of footwear, I was gonna scream.
We talked outside and I explained myself. That sounds way more graceful than it was…I actually whined through my tears about my feet and my frustration and how I just really, really needed to be home.
“I wore my ugly Crocs because I knew it would be a rough day and they’re supposed to be comfortable, but they attacked me with blisters! My feet were to swollen to fit into flip flops that were a size too big! Flip flops!” I lamented, my boyfriend trying hard to understand how shoes, yes shoes, could bring his otherwise composed, mature girlfriend to tears. (Of course this is the moment a friend walks by, but I didn’t have the energy to explain, so I assume she thinks we were having some terrible fight).
I got home and soaked my feet, but that didn’t stop this flare from stealing my whole weekend. It was all I could do to leave the couch Saturday for a lunch date with the bf. Today has been equally sore and exhausting. I’m sincerely hoping tomorrow treats me better.
Interested in more tales of shoes driving me utterly mad? Check out A Shoe Story Part 1.