The worst part about having a chronic illness is that the cycle of adjustment to your “new” life. One day, I can run 3 miles and the next I can’t bend my fingers. I can’t get past grieving the life that I have every few days if I still experience it.
Arthritis affects 50 million Americans, 300,000 of them children. Of those 50 million, 9,500 will die from the disease EACH YEAR, one child every week.
I never ask for help. But this is the one time I will. I have had Rheumatoid Arthritis and Sjogren’s Syndrome for 5 years. I started rock climbing less than a year ago, and I knew I had found my passion.
But without a cure, I can’t continue to do the one thing I have come to enjoy in life. I am a team captain in the 2014 Atlanta Walk to Cure Arthritis. My team name is Rocking Our Way to a Cure. Any donation would be so greatly appreciated, even $1 would get us closer to a cure. I would love for anyone who can to join my team as well. My team page is here and my personal page is here. Both accept donations as well as new team members. Thank you so much to all of you who continue to support me in everything I do.
Signal boost! This is absolutely awesome! Please help Jesse and Team Rocking Our Way to a Cure reach their fundraising goal!
Q:What do you love most in the whole world?
Oh my goodness, what a question! I gave this a lot of thought…
I love most that I’ve found ways to enjoy life. I’ve never really known what that’s like before, both before and after I got sick. I love my life more than I hate my pain…most days.
Maybe that sounds really cheesy or abstract (or like a load of BS, and some days it might be), but it’s true. We have a saying here at FSU that we’re “living the dream!" and for the first time ever in my life, I feel like that’s true. I feel like I’m living the dream this year.
Living the dream and telling arthritis to kiss my ass at the same damn time~
I’ve got a major case of #painsomnia going on, if any of you want to chat on twitter or via ask box, now’s a good time. Going to answer some more questions for the next little bit.
Q:Just wanted to share a great story I live on the second floor of an apartment building and my neighbor who I've only met in passing just brought my delivery of biologic meds from the front door to my apt door, not knowing how messed up my knees have been and that that climbing those stairs for my temperature sensitive package was my Mount Everest today. What he did as an afterthought nearly brought tears to my eyes.
This is beautiful! A little act of kindness can change someone’s entire perspective and make someone’s whole day. You deserved it, anon.
Pay it forward!
It’s that time of year…
Final exams. They are upon us. I have an exam—not including final exams—each week until May 2nd.
I can guarantee my tumblr inbox response, replies, facebook activity, and blogging are going to slow down for a little while.
Although I say that and then using blogging as a way to procrastinate, but I digress.
Have some patience with me over the next month. Show some support for the other #spooniestudent(s) battling chronic pain and information overload.
I hope to have a finals-related post up soon and will have a special somethin’ planned for the next two weeks for student support. So keep an eye out for that announcement.
Q:What can you tell me about the etanarcept injection that treats Arthritis? I'm on it right now and have been having problems with my liver...
Elevated liver enzymes are common with biologics. Typically this resolves itself once you stop the medication and many doctors are not concerned so long as A, you are having labs drawn regularly to check your liver function and B, your metabolic profile is stable otherwise, and C, you have no major liver conditions otherwise. But:
- Important question number one: are you seeing a rheumatologist or specialist regularly and having blood work done? If no, this should be addressed ASAP.
- Have you had discussions with your doctor regarding side effects, adverse effects, and how your doctor plans to monitor you while you are on this medication?
- You can contact Enbrel and request a full information packet.
- Please call Enbrel’s patient line! They have nurses and pharmacists on standby to talk you through any questions you have regarding the medication, free of charge. I’ve linked you to the site and number above. They helped me greatly when I was on Enbrel myself—do not hesitate to call!
Enbrel is a biologic medication, specifically it is an Anti-TNF (tumor necrosis factor-alpha) based medicine. This means that Enbrel blocks TNF cytokines—inflammatory ‘messengers’ that cause inflammation and are mistakenly attacking your joints/connective tissue—effectively suppressing your immune system and hopefully making you feel better!
That’s a simplified explanation, but here is some more information on how medicines like Enbrel work if you are interested. Here is a video that shows how the medicine works.
I hope this helps! Please reach out to your doctor and the Enbrel program, and check out the resources I’ve linked you to!
I was able to run today. I haven’t really posted too much about it, but I haven’t been running—really running—since December. I hike trails and walk at parks, but running has been out of the question for months.
Today though, furious and stressed, I gave up studying, gave up trying to reason with unreasonable people, and drove out to a local state park. And I ran!
My god, I ran.
It was amazing.
For the first time ever, pain didn’t take up my thoughts while running. Everything just disappeared—the stress, the shitty people bringing me down lately, the kreb’s cycle (yes, I went there)—everything. It was just me, the fresh air, cool breeze, a good playlist, the sound of my feet hitting the dirt.
I ran until I found my favourite spot (first photo), where I sat and did a 10 minute meditation exercise I have on my iPod.
I ran the rest of the trails and ended the evening watching the sun going down lakeside.
I am so proud of how far I’ve come. No matter how much pain I am in or how much shit life throws at me, I’m going to be okay.
And you are too!
I hope you’re all able to find an escape. Maybe it’s a book or a song, an art project or a TV show. Certainly it doesn’t have to be running.
Find something that helps you remember what a tiny piece of the universe you are. Find an escape that helps you find a sense of gratitude for something—anything—no matter how small.
Find your strong.
**I changed my Instagram name, so follow me here.
** #findyourstrong is a hashtag started by Saucony, a company that makes running shoes (great ones, I might add). I’m not sponsored by their company in any way, but I do wear their shoes when I run, and their hashtag has always stuck with me—#findyourstrong resonates with me. Don’t be afraid to tag your own #runningwithrheum posts with it too.
Q:Can I give you a solution to chronic pain. Ive helped many. One lady came to me and had been in pain in both hips for 14 years from a car wreck. Her pain level was 10 on a scale of 1 to 10, 2 min later her pain level was 3. I helped her lower both hips to a 3. Ive seen happen for 100's of people.
Well, in a short answer, no. No, you cannot give me a solution to chronic pain.
I mean this with respect and I say this not to attack or insult you, but hopefully to educate you. I get tons of inbox questions of this same nature on a weekly basis. I’m talking 5-10 a week—everything from apple cider vinegar to prayer to turmeric and psychic energy healing.
I do not have an injury that has not or will not heal. I do not have reversible tissue or bone damage. No amount of physical or occupational therapy will completely alleviate my chronic pain. And here’s why:
I have multiple chronic, incurable diseases of the immune system that cause very serious—often life threatening—systemic inflammation. I have “failed” many of the few medications out there and remission is not likely for me personally at this point in time.
And while there are things to help alleviate some of the inflammation and chronic pain that comes with that inflammation—there is no end all, be all solution. There is no cure.
It’s extremely frustrating to receive messages like these. Suggestions are one thing, but solutions? Cures?
I changed my diet radically: no sugar, no wheat, limited dairy. I take a whole host of supplements. I take low dose chemotherapeutic medications and inject myself nightly with very strong immunosuppressants. I exercise. I rest. I take epsom salt baths. I drink 2-4L of water a day. I don’t smoke and I do not drink much. I’ve tried acupuncture, meditation, visualization, D all of the above.
I devote most of my day to managing my pain and taking care of myself, and you know what? I still had a tiny meltdown in my car today from being in so much pain and having a huge flareup these past few weeks.
Pain is a part of me. I hate it, but I am also at a point where I accept its presence in my life. I will always work to minimize it, to mask it, to improve my quality of life, but messages like these? They are infuriating. They are invalidating and they minimize the struggle that millions of other patients like myself go through.
If you want to find a solution, help us find a cure. We need research not just into treatment, but into etiology—help us find the cause, because we will never find a cure if we do not understand disease cause and prevention.