Does anyone else with Rheumatoid Arthritis (RA) have trouble sleeping? The crazy thing is, it’s not the pain that keeps me up at night. At least I don’t think it is the pain, or perhaps I’m partially immune to the pain after 12 years of living with RA. Could it be side effects from my medication? Stress? Work? Life? One thing is for certain. The more I think about sleep, the less I sleep.
I’ve tried reading, watching TV, taking melatonin, general relaxing, meditation, the HeadSpace app, warm baths before bed, drinking warm milk like a baby… Heck, I’ve even tried Lunesta which actually works, but I’m afraid of getting addicted or sleepwalking.
So I’m reaching out to my spoonie friends for help. What sleep remedy works best for you? I’m willing to try just about anything.
I just realized it had been almost a year since I’ve sat down to write a post. A year? Seriously? Where does time go?
Since my last post, I moved to Austin, Texas. It’s almost as weird to type right now as it is to recite my new address over the phone to the mail-in pharmacy. I often forget my 312 area code was replaced by 512. Although I love Austin to pieces, sometimes I still want to shout, I’m from Chicago!… But I suppose that’s becoming old news as I’m soon to embark upon the 6-month anniversary of my relocation to Texas. And since there are something like 150 people moving to Austin each day, I’m officially a local by now.
New job, new dates, new address, new puppy, new cowboy boots and a fresh new perspective on life…. But with all of those changes, one thing remains constant, I still have RA. On the bright side, I escaped the worst winter Chicago’s most recent history. And along with that, I saved myself from a lot of extra pain and stiffness that for me comes hand in hand with cold, brutal weather.
I will soon be testing Actemra, a newish RA injectable. Have you or anyone you know tried this medication? Would love to hear about your experience with this drug because after all, sharing is caring.
Too often, I get lost in my everyday routine… work, friends, family; LIFE so much so that I simply forget to write or writing just keeps moving to the bottom of my priority list. This is especially true when my RA is under control. But lately, my RA has been again flaring and so thoughtfully reminding me why I started this blog in the first place; to vent, learn and let others share their stories of pain and courage with the rest of the world.
The other day, I received the most heartfelt, honest email from a girl named Cara who just happened to stumble upon my blog. While it broke my heart to read all the pain that she has endured over the last 5 years, Cara’s email encouraged me to get back on track with my writing and inspire others like her to share their stories.
Below is Cara’s email which she graciously agreed to let me share with all of you.
Hi Katie! My name is Cara, I’m 24, I live in Philly and I have RA and Lupus- my doctor affectionately calls it Rupus. I felt the need to write you, because I was just diagnosed this past spring and I’ve been really struggling this summer.
My mom sent me your blog because of your kitchen gadgets post (I recently decided to cook myself healthy- down 18lbs in like 3 weeks, gluten free!) and as soon as I started to read I burst into tears. I know it sounds crazy to be so emotional but I want you to know that its really awesome that you’re writing this blog- I have felt so alone for the past few months, even though my family, friends and doctors have been awesome, I still really feel like no one knows what I’m going through.
I’ve been really sick since I was about 19, and no one has been able to put their finger on it- I’ve been told all kinds of things, I’ve even been asked if I had seen a psychiatrist (I have, but I’m sick not crazy!) so I thought that this would make everything better- I thought this was the light at the end of the tunnel, but I feel like I’m still chasing that light- do you know what I mean? I’m sure that you do. It was really nice to read about being a “strong woman” and crying when squeezing your fingers- last Sunday it felt like someone was taking a sledge hammer and smashing my wrists and hands. I generally consider myself to have a high pain tolerance- I fell and broke my wrist last summer and didn’t even realize it- but last Sunday I was sitting on my bedroom floor against my bed sobbing because of this “invisible” pain, it was unreal. I felt like a crazy person.
I recently started Humira (in addition to Plaquenil), I have my second injection on Friday. I’m scared- like you said, I feel like a 5 year old. I’m not afraid of needles but it burns SO bad, I hate it. My boyfriend said he would stick me, but I feel like I need to do it- like I need to prove to myself that I can do it- I won’t be beaten. Although admittedly its hard to not feel like I’m being beaten, because some days I feel like I’m dying- not like, “omg, this pain is so bad I’m dying”, like I’m actually dying, like my body has hit the self-destruct button and its slowly shutting down. I was in the hospital a few weeks ago for breathing difficulty. At first it was like ok, its probably just your asthma, and then when they saw my fingers and toes were blue and when they found out I had RA and Lupus the hospital staff looked at me with panic. I’ve never seen panic in the eyes of medical staff before. They genuinely thought I had a pulmonary embolism and went into emergency mode. It was really scary. Thankfully it was just costrocondritis, but they also found a nodule in my lung which is caused by the RA.
I see the pulminologist tomorrow to get it checked out- make sure its nothing more sinister. I’m sorry for the rant and I’m sorry if I sound so negative, I’m really not a negative person! I’ve just so nice to find someone who was diagnosed at the same age as me and who seems to be dealing with it. I guess I just want to know if it gets better (Like those commercials “It gets better”).
You’re 30 now? I just can’t imagine feeling like this for the rest of my life, I really can’t. I used to be a dancer- I danced 5-6 days a week. I’ve had to stop working recently because I just get too tired! Even going to the grocery store wears me out! I’m hoping the Humira starts kicking in and I can go back to work soon- I need that money honey!
Anyway, the whole point of this email was really just to say, thank you. Thank you, thank you. I know I don’t know you, and I’ll probably never meet you, but thank you. Your blog means more to mean that you know, and I’m sure it means a lot to other people too. I’m sorry for this diarrhea email, I started writing and couldn’t stop- but its somewhat cathartic getting it all out there, even to a complete stranger. Thank you again, and know that I’ll keep reading, as long as you keep writing, maybe it will help us both keep going. -Cara
If you have a story you’d like to share with myself and others in the spoonie community, Cara and I both would encourage you to do so. I firmly believe that we all have to stick together because nobody can quite understand what we’re going through without walking (or limping) a day in our shoes.
Thank you Cara for reminding me what is important… You are.