What keeps me writing?… YOU do

1950s women rubbing feet; heals; pain
Walk a day in my shoes

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.


2 thoughts on “What keeps me writing?… YOU do

  1. Hi, i read Cara’s story and I know exactly how she is feeling. I really must share something here. I want to tell Cara that there is hope, Please belive that one day you will be pain free. I know it sounds impossible and u probably think I’m just nuts but do continue reading and perhaps you may have faith then. I was diagonized with RA and SLE 16 years ago right after my first child was born. There was a time when I could not get off the bed at all for 15 days, and there were times when I had to crawl to open the door. I tried every kind of alternate therapy like Homeopathy, Ayurveda, Natureopthy. Acupressure and so on along with metatraxate and all the other drugs my doc was puting me on. Nothing seemed to work. Also my vitamin B level and Calcium and Viatamin D3 were found to be low so I was given 3 calcium shots every 15 days and Vitamin B injection once a onthe for 2 monthsThen i decided to try something else, I modified my diet, stopped all red meat, fried food, colas and especially completly stopped coffee and tea as well as dairy products, white bread, biscuts and all other stuff made with white flour. I stopped eating anything with sugar in it and packed food with preservatives. You may wonder if i ate anything at all. Well i pretty much stuck to boiled vegetables, salads with olive oil dressing, brown rice, fruits and vitamin suppliments. I had plenty of water and Aloe vera juice as well as gensing tea. After one year of this I began to feel a lot better, my CRP, anti DNA and other tests began to show less inflamation and today after a two years of sticking to my diet i am happy to say, i am off all medication, I walk, I drive, write and even manage to lift light weights at the gym twice a week. It feels wondeful. Of course there are days when there is pain and that usually happens when I get tempted and drink a cup of coffee or eat sugary stuff. (Also the damage already done by RA could not be reversed and I still wake up with somewhat stiff fingers.) Please do give it a shot by altering your diet drastically. I am sure, although there are no tests to substansiate this, that coffee and tea (even green) causes maximum inflamation. i wish you the very best and will remember you in my prayers everyday.


    1. Hi Meera, I too have tried the gluten free, sugar free, no fun foods diet and it DOES work for me too. The only problem is sticking to it. I give you major props for being able to adhere to this extremely strict diet because there are sooooo many temptations in life. I wish I had your dedication all the time because I know for a fact I would be feeling better right now. Keep on keepin’ on!!!


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