Lordy, it’s been a hot minute! I can’t believe how much time has passed since my last post, which I can only attribute to my switch from Enbrel to Cimzia, which has me feeling perfectly healthy. And, feeling healthy means writing an RA blog is not top of mind.
This summer I found myself traveling quite a lot. As my readers will know, I’ve done a lot of traveling with Enbrel, which has been approved to safely remain out of the fridge for two weeks (a traveler’s dream!).
Cimzia is another story……
Part I – A Trail of Water
So, I packed up my three month’s worth of drugs with ice packs and spare Ziplocs for the ice I knew I’d need on my journey to Berlin – a domestic flight, a three-hour layover, an international flight, a twelve-hour layover, a taxi ride —> finally, fridge in Berlin, Germany.
Most airlines will not help you out by putting freezer packs in a freezer or drugs in a refrigerator during your flight. American Airlines was no different, but they did give me ice in a bucket, which helped a bit. But byy the time I got to Zurich, just halfway through my journey, my ice packs were dripping and I was worried about my drugs warming up.
I got off the plane in Zurich and immediately went on a mission for a waterproof cooler and ice. Apparently these things are hard to find…. I ultimately found ice at a restaurant, but not a cooler – even after being in grocery stores and pharmacies.
So me and my cloth cooler and dripping bags of ice went on a tour around the city, leaking water every step we took. I stopped at many cafes, got dirty looks from many waitresses as I asked for ice, and alternated between cursing my drugs and being grateful that I had them so I could travel at all.
I felt a huge relief getting them in the refrigerator in Berlin – their home for a month and a half.
Part II – This Bar Has Ice…. and Alcohol
I met my parents in the Netherlands and the hotel they booked didn’t have a refrigerator. For a ormal traveler, this wouldn’t matter in the least. For someone traveling with drugs that have to be refrigerated, it’s a total pain.
We got in late so the lobby was closed. I talked my mom into walking to a bar to try to convince the bartender to give me a few bags of ice (and, you know, maybe grab a drink or two).
We lucked out and got a late night glass of wine and enough ice to sustain me until the lobby and kitchen opened up and I could stash my RA drugs in the kitchen fridge.
Part III – So Much For the Good Seats
I flew from Germany to France to meet my friend in Bordeaux. The journey included a flight and long train ride, but at this point I’d gotten used to it and had plenty of ice packs to get me through the journey. At the hotel, I realized we didn’t have a refrigerator in our room (again!), so I asked the hotel to store my drugs, which they graciously did.
When it was time to depart to the coastal town of Biarritz, we were running late. We checked out in a rush, Ubered to the train station and sat down with relief that we made it. It was about the time that we were celebrating the proximity of our seats to the bar car that I realized I’d left my Cimzia in the hotel fridge.
“I left my drugs, I’ll meet you in Biarritz!” is all I had time to say as I grabbed my backpack and bolted off the train just in time to see it leave.
I took a cab back to the hotel, grabbed my drugs, cabbed back to the train station, realized my tickets were non-refundable and the next train wasn’t for awhile, booked a bus ticket, waited for a bus that was two hours late, and finally made it…..
Part IV – No Pain, No Gain
Yes, traveling with RA drugs is a pain. I wish I didn’t have to do it. But I am so grateful I get to travel. I am so grateful my joints are strong enough to grab a bag and run off a train. I am so grateful I am health enough to wander around Zurich for twelve hours. Drippy ice packs or not, I can only channel gratitude. I hope that RA drugs don’t stop you from going to the places you want to go!
If you live with a chronic disease, you’ve been told some variation of “you can cure your disease if you eat this or don’t eat this”. I’ve been told to eat ginger, turmeric, be vegan, go paleo, cut dairy, cut nightshades.
The list goes on, and I’m generally skeptical of these suggestions. But there’s nothing like mounting symptoms to get you to try anything.
So last fall, I decided to embrace the Autoimmune Protocol completely for 30 days and slowly add in foods. To help, I bought
- The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness
- The Autoimmune Paleo Cookbook: An Allergen-Free Approach to Managing Chronic Illness
The diet is strict – essentially having you cut anything that could trigger a reaction, reset your gut, and add foods back one by one.
Here’s the guide I followed, created by Mickey Trescott:
After a month of following the diet, and a few months adding foods back in, here’s what I learned:
- Life is just not the same without coffee and wine. 😉 Seriously, I don’t care if my symptoms flare a bit, these “food groups” have been added back and are staying.
- The diet makes eating out nearly impossible. For me, this was difficult as I eat out a lot. Being forced to cook so much was a learning curve, but I’m now a much better cook!
- I now know how to cook all sorts of meats. Before this diet, my kitchen was essentially vegetarian because I didn’t like cooking meat. Now I cook it weekly.
- Nightshade vegetables DO cause achy joints for me the next day, particularly tomatoes and peppers.
- My gut feels better with WAY fewer grains in my diet. Though I’m currently not gluten free, I generally now stick to rice and corn if I’m eating grains.
- I have continued to eat more vegetables, meat, fermented foods and kombucha and feeling better for it. Most mornings, I still make myself a green smoothie to start the day.
I’m not about to tell you this diet will cure you. I’m feeling better, but I think that’s largely due to a change in medication (switching from Enbrel to Cimzia). Adding the “light” version of this diet I’ve landed on to my lifestyle keeps me healthy and makes me feel good. I recommend testing it for yourself and would love to hear if you have experience with this diet in the comments!
A good collection of first person stories of living with Multiple Sclerosis: https://www.nytimes.com/interactive/2018/well/patient-voices-multiplesclerosis.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=second-column-region®ion=top-news&WT.nav=top-news
“I just don’t know how much pain I’m expected to endure,” I confided to my friend.
And so, I had to admit to myself that I’ve been living with more pain, more morning stiffness, more burning sensations in my joints waking me up at night than I was willing to tolerate.
Because the pain is scary. It makes me think of my X-rays when I first got diagnosed, showing the pain that I had ignored had turned into bone erosions – permanent damage.
And because the pain is exhausting. Emotionally and physically exhausting. Invading my thoughts throughout the day. Throbbing right wrist, stiff left pinky, swollen left ankle, burning right elbow — Oh, was I supposed to be paying attention in this meeting? Invading my sleep at night. Invading my optimism that I had this disease under control.
And then I had to admit it to my rheumatologist. And then I heard him asking if I wanted to get on Prednisone. No. Methotrexate? I’d rather not….. I like a drink. I like to know if I get pregnant I won’t have to abort the child. I like not feeling nauseous one day a week and shedding copious amounts of hair. What else is there?
So now, Plaquenil. A malaria medication, which is a DMARD used to treat lupus and rheumatoid disease (though the printed information the pharmacist gave me states “they don’t know why it works to treat these diseases” — encouraging, right?).
Following the appointment came a struggle. Reading the side effects, wondering if more drugs were the right course, determining to also try lifestyle and diet changes.
Wondering if this was somehow because of something I could have prevented. Something I did. Eating the wrong thing? Stressing about my breakup and work too much? What if I could meditate and eat more kale? And cut out nightshade vegetables and gluten and dairy and sugar and caffeine and never drink again and basically become a monk? Would this disease leave me alone then?
And then depression. And acceptance. And sadness.
Because I’m back here again. Wondering if this treatment will work. Remembering that this disease is labeled chronic and I’m probably stuck with it for the rest of my life. Trying to remember how to feel optimistic and hopeful.
And two pills a day. And one shot a week. And less gluten, dairy, sugar, nightshade veggies, caffeine and alcohol. And more acupuncture.
And maybe starting to feel better. Maybe remembering how to have hope.
Love to all of you dealing with the taxing ups and downs of autoimmune diseases. I would not wish this on anyone, but it does force you to slow down, to be aware of your body, to appreciate the moments that are pain free and the moments where you surprise yourself with what you can do and what you can bear.
If anyone has experience with Plaquenil – good or bad, I’d love to hear it!
Heather Kirn Lanier’s article on raising a daughter with Wolf-Hirschhorn Syndrome might seem removed from my life experience, but it hit home for me, as I’m sure it will for many of you.
Too often, I feel like I am to blame for being sick, for having Rheumatoid Arthritis. Like somewhere along the line, I did something wrong. Had the wrong diet, was too stressed out, was too hard on my joints.
And on the days I am strong enough to not believe that I caused my disease, I have to live with the fact that other people do believe it. They think that I wasn’t [insert fun adjective here – fit, healthy, happy, mindful] enough. That if I’d [insert condescending verb here – taken vitamins, run more, meditated], I wouldn’t have RA.
Well you know what? Fuck that.
The article isn’t about RA. It’s largely focused on motherhood, something I’ve yet to experience. But it doesn’t matter. It resonates just the same.
I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral.
Here’s the thing. If you buy into a false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.
Perhaps the point of life was not to achieve some kind of perfection. Perhaps illness was an integral part of life’s dance. Perhaps fragility was built into our very design. Perhaps fragility was also strength.
So the affirmation-uttering woman might more honestly say into your ear: It will not be easy, and it will not be comfortable, but it will be, and you will become.
Here’s a challenge: love your body.
I mean it. Dance in front of a mirror and tell yourself your beautiful.
Love your tall, your short, your skinny, your fat. Love your freckles, your dimples, your birth marks. Love your hips, your boobs, your butt.
Love your joints that don’t quite straighten. Love your rheumatoid nodules. Love your body’s quirks and imperfections.
I mean, why not?
Next time you catch yourself “if only-ing” about your body…. If only my eyes were blue. If only I lost 10 pounds. If only my face was perfectly symmetrical. And I was taller, thinner. And I could run without sweating. And eat without gaining weight. And stand on the beach as though salt water were a hair product.
Breathe. Love. Embrace.
So, this is how it was supposed to go! Two painless weeks of hormones and 9 mature eggs now in the freezer.
After my canceled round a couple of months ago, I was feeling pretty discouraged. I took a month “off” to prep my body for a second round.
Of course, “off” in the world of fertility meant a month of testosterone gel, progesterone, estrogen, and blood thinners. So, the month off was taxing, but it let my brain take a break and forget about eggs.
Then, day one of my cycle came. The ultrasound brought news of another cyst. Last round, the cyst had been a showstopper and I chose to spend money to have it drained so I could continue with the hormones.
This time, the cyst was small enough that they gave me a choice: wait another month for it to go away, have it drained (for yet another $600), or continue with the hormones and risk the cyst growing as well.
My nurse told me to listen to my gut, and my gut was telling me that it had been a waste of money draining it last time and obviously my body is prone to cysts, so waiting it out didn’t seem rational. I opted to begin the hormones: Menopur, Omnitrope, Gonal-F and Clomid, this time at higher doses than the last round.
And this time around, in spite of the extra shots each day, I found it relatively easy. Giving myself shots wasn’t as emotionally taxing as last round and my body wasn’t bruising anymore (in spite of still being on blood thinners).
I eagerly awaited for day 6 when I could find out how my eggs were growing and whether the cyst was messing everything up. Last time the news on day 6 was that I only had four eggs growing, but two were so far behind, only two would be mature by my retrieval date. This time, I had 11 good-looking possibilities and my cyst was growing slowly enough not to be a concern.
After that, it was continued hormones, daily morning ultrasounds and bloodwork, and daily afternoon calls from the nurse. To my surprise, everything was growing right on schedule. My body was responding well and things were looking good.
Finally, I got the news that it was time to take my trigger shot. The shot had to be taken at exactly 8:30pm so that surgery could take place exactly 36 hours later. It was my fist time giving myself an intramuscular shot (versus subcutaneous) and I was super nervous. To my surprise, it was relatively painless (though I was pretty sore afterward).
My partner drove me to surgery 36 hours later and that went smoothly. No pain during or after and I didn’t even get sick from the anesthesia! I am very happy that we got 9 mature eggs (so much better than the 2 from last round!).
Seriously, after all the complications my body has thrown me, I was shocked that things just went well.
One major bonus of this whole process: I’m still off of methotrexate and my RA symptoms are under control. I still take Enbrel (and I will never complain about one shot per week again!), but my rheumatologist and I are going to try to keep me off methotrexate. I’m so excited to be down to one RA drug!!
Day 1 (Thursday) – The day I wonder why everything is so hard.
I would have started this whole process last month, but I had a totally normal, randomly occurring cyst form in my ovary. I opted to wait a month to see if it goes away on it’s own.
I’m not really in a time rush after all, but I am very eager to get this show on the road. My “chem lab” and “pharmacy” have taken over my apartment, my vacations have been perpetually put on hold; let’s grow these future babies!
Well, one month later, I found out my cyst is still there. I couldn’t help but start to wonder if I’m destined for literally every medical thing to be more complicated than expected. Tried to push the thought away.
Day 2 (Friday) -The day the hardest part is just the beginning.
I opted to get my cyst aspirated versus go through another month or more of waiting to see if my cyst decides to go away on its own.
This was a hard decision because it was an extra $650, a three hour round-trip drive to the clinic in rush hour, and a needle-in-the-ovary procedure.
Met some friends for dinner who tried to encourage me…
Them: “You’ve had a needle pushed into your ovary – you’ve already been through the hard part!”
Me: “But I haven’t even actually started yet…” (cue appropriate use of crying/laughing emoticon)
Day 3 (Saturday) – The day I start hormone injections.
Luckily, being the RAD person I am, I have plenty of experience with injecting myself. The thing I don’t have experience with is mixing my own drugs… which I managed to mess up.
In my defense, it was early, I was running late, and I was a caffeine-addict avoiding coffee. So I grabbed 1ml of sodium chloride from the first vial and pushed it in the menopur vial without paying much attention. I took a look and it looked the same as it had before. Conclusion: the menopur vial must have been empty!
I pull the 1ml of liquid out and combine it with a second menopur vial, noting that this one most definitely has drug in it. The resulting liquid looks identical to before. Oops.
I troubleshoot and add an additional ml of sodium chloride to dilute it back to the required dose and then take half of it.
But then the internet scares me by saying you can only store it this way for 15 minutes.
Frantic call to the emergency nurse line and she told me I could store it for 24 hours and use it tomorrow morning — phew! Disaster (or really wasted money) diverted.
The nighttime shot went more smoothly.
Day 4 (Sunday) – The day I become an injection pro (and a living, human pin cushion).
Sunday happens to be my Enbrel day. Combine that with a genetic disposition of blood clots, which means I need blood thinners when messing with estrogen, and I had a whopping four self injections today. Go me!
Here’s what I’ve learned:
- Hormones have the smallest needles and don’t sting
- My blood thinner (Lovenox) has the widest needle which makes the injection site bruise and makes it hurt (seriously, who designed these things?)
- Enbrel has the longest needle of the bunch. WTH, Enbrel?
I also learned that brewing up eggs is hard work – my body is in RA flare fatigue status.
Day 5 (Monday) – The day I perfect my inner pep talk (aka talking to myself).
“You got this! Feed those future babies! You’re a needle ninja!”
– me, to myself
That’s right, I’ve started talking to myself before injections. And maybe my cat.
I was late for my nighttime injection because IKEA is like a black hole time suck, but other than that I’m feeling like I finally have a handle on this.
Hormones? No prob.
Day 6 (Tuesday) -The day this becomes tedious and I question everything.
This morning I went in to get blood work and my ultrasound. Then it was the waiting game.
You go in the morning to get labs, then they get sent across the city and you have to wait until the afternoon for results.
But I had a feeling the news wouldn’t be good. The ultrasound nurse counted five follicles that had shown growth. Five!
This is down from a resting follicle count of 21 and a hope for 15-20 eggs to come out of this.
I couldn’t help but cry in my car on the way home. Why is my body constantly making things more complicated? Why am I doing this to myself? What if I’m never supposed to have children?
That afternoon I broke the golden rule and hopped on Google and discovered that some people start out slow. I felt hopeful.
My nurse was pretty encouraging as well, telling me to wait a day or two to see my progress.
So I distracted myself with Pitch Perfect and ice cream and hoped for the best.
Day 7 (Wednesday) – The day my disappointment is crushing.
The news at this morning’s ultrasound wasn’t great. Five follicles, one not growing at all, two growing out of pace with the two biggest.
Tears. Lots of tears.
And talks with a supportive partner and supportive friends.
And, finally, talks with my nurse in the afternoon who left it up to me, but suggested I could cancel this round and try again next month with more aggressive hormone treatment.
My doc says that what he would advise his wife to do, so that’s what I’ve decided to do.
So goodbye to this month’s possible future offspring. Goodbye hundreds of dollars of drugs. Hello bruised stomach and thighs. Until next month….
Perhaps this could be relevant to other autoimmune disorders, such as rheumatoid arthritis, as well?