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.


Innovations Consulting Group is holding a FREE series of workshops for patients with Rheumatoid Arthritis this Tuesday, 7/17 at the Cornell Club at 6 East 44th Street from 6-8PM.

RSVP online at:  www.innovationsgroup.org/events

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Calling all Chicago folks affected by Rheumatoid Arthritis!

Innovations Consulting Group is holding a FREE series of workshops for patients with Rheumatoid Arthritis this Thursday, 6/14 at the InterContinental Chicago Hotel located on Michigan Avenue from 6PM-8PM.

Patient workshop invitation


Arthritis is the leading cause of disability in the US. Those affected by Arthritis know that everyday tasks, even the most simple ones can be extremely difficult to manage. As someone affected by Rheumatoid Arthritis (RA), I know all too well how difficult it can sometimes be to get out of bed, get dressed, wash my hair and brush my teeth, let alone cook myself a meal. But the truth is I love food. And I not to brag, but I know my way around the kitchen pretty well.

Unfortunately, when my arthritis is flaring, I’m typically left to eat some random unidentified food from my local grocer’s freezer. This stinks because my recent conversion to a gluten free diet coupled with my love for home cooked meals don’t allow for many short cuts around the kitchen nor a desire to eat prepackaged food.

I was recently introduced to Trudeau’s line of Stress Less kitchen gadgets. They offer a range of Arthritis friendly everyday household kitchen items like salt and pepper shakers, a cheese grater, pizza cutter, garlic press and can opener. I’ve recently purchased all of the above and can say they are a life saver when my hands are aching. These products are easy to hold and handle when my fingers are weak and numb. I’ve documented some of my most recent meals made easier by Trudeau’s Stress Less kitchen gadgets below.

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Do you have any tips to share for people cooking with Arthritis? I would love to hear about them!


Surgeon perfoming laproscopic surgery on a shoulder. Here's to hoping us RA patients can avoid painful joint surgeries like these in the future.

I just came across a really exciting article written by Susan Bernstein, published by Arthrtis Today which claims that joint surgery is on the decline for us Rheumatoid Arthritis sufferers. I’ve posted an exert from the article below because this news is too great not to share. I’m loving this kind of progress!

When rheumatologist Erdal Diri started working at Trinity Health Center in Minot, N.D., a decade ago, he saw many rheumatoid arthritis patients referred to him by surgeons frustrated by the levels of joint inflammation they saw.

“Most of these patients were ending up with orthopaedic surgeons and during surgery, they opened up their joints and they were so inflamed that they closed them up and sent the patients to us” to get the inflammation under control before joints could be operated on, recalls Dr. Diri. Better inflammation-fighting drugs and a new approach to treating RA more aggressively has changed that, he says.  From an average of 30 to 40 RA patients being sent for surgery a year at this rural hospital, Dr. Diri now sends only 4 to 5.

“We get control of inflammation at an earlier stage, and we don’t see the joint deformity that we used to see, so the numbers of surgeries are going down. We are living in the anti-TNF era, and we’re seeing the results of that now,” he says.

Biologic drugs that suppress inflammatory agents like tumor necrosis factor (TNF) and others are indeed making a positive impact for people with RA. Surgery to repair joints deformed by RA is down sharply nationwide over the last twenty years, according to recent research.

The most recent study, conducted by rheumatologists at the Mayo Clinic in Rochester, Minn., and published in Journal of Rheumatology in January, tracked surgeries among 813 RA patients from 1980 to 2007. The researchers, led by Eric L. Matteson, MD, found that the incidence of any joint surgery within 10 years of their diagnosis went from 27.3 percent in the 1980 to 1994 period to 19.5 percent from 1995 to 2007. Soft-tissue surgeries declined the most over the period studied, but total joint replacements were down as well. Women and obese RA patients still had more surgeries than men or thinner patients.

In an earlier study published in the journal Annals of the Rheumatic Diseases, researchers supported by the Intramural Research Program at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, part of the National Institutes of Health) also tracked a group of California RA patients from 1983 to 2007 and found similar declines. Knee replacements for these patients dropped 19 percent over the period and hip replacements dropped by 40 percent.  

The full article can be viewed at the Arthritis Foundation website.


I’ve written about the correlation between weather and arthritis in a few of my past posts, but felt the need to bring it up again since we’ve had record breaking weather conditions in Chicago and I’m feeling really crappy today. After two weeks of 70+ degree weather in Chicago this March (and feeling just freaking fantastic), it’s barely reaching 50 degrees on this dreary Monday… Translation = I could barely get out of bed this morning. My knees are tender, my feet and knuckles are swollen, my back hurts, my hips are barely holding my legs to my torso. Seriously though, my boring list of aches and pains could go on for ages. But rather than ponder them further, I took a shower and schlepped my way to work this morning.

Why do my Rheumatologists never talk about weather and Rheumatoid arthritis? I know there has to be a relationship between the two. Maybe not for everyone, but definitely for this 30 year old stuck in a 50 year old’s body.

The cool people at Weather.com offer us an “Aches & Pains” index which gives users a sliding scale to help identify when they might want to stay in bed due to unseasonably achy weather. 10 means “Don’t even think about leaving your house today!” While 0 means “Go for a jog, climb a mountain, do everything you’ve ever wanted to do… while you can”. So check out the site before planning a big event, getaway, etc. It could help you prepare for the best… or the worst.

And in case you were curious, below is the methodology for the “Aches & Pains” index at weather.com.

Aches & Pains Index Methodology

This index forecasts the potential for weather-related aches and pains, especially in people with chronic health conditions (such as migraines or arthritis) that might make them sensitive to changes in weather conditions. “10” represents the highest risk of weather-related aches and pains. “1” represents the lowest risk.

The Aches & Pains Index is calculated using barometric pressure, absolute humidity, chance of precipitation, temperature and wind. Areas of quiet, dry weather during warmer times of the year are generally associated with lower levels of aches and pains. Approaching areas of low pressure or strong frontal systems, both leading to stormy weather, may cause higher levels of aches and pains.

The scale for the Aches & Pains Index is: Very High (9, 10), High (7, 8), Moderate (5, 6), Low (3, 4), Minimal (1, 2)

Chance of Precipitation

Precipitation includes not only rain, but also snow, sleet, hail or any other form of water that reaches the ground. It is considered a factor in aches and pains because rainy weather accompanies changes in barometric pressure and humidity. For those who are sensitive to hot weather, rain can cool the atmosphere and may bring some relief.

Humidity Change
Humidity is the amount of water vapor in the air. An increase in absolute humidity (the amount of water vapor per unit of air), especially in the summer, is commonly associated with an increased potential for aches and pains. Some research also finds a correlation between dry, cold air and migraine headaches.

The four levels of the Humidity Change scale are: Steady, Slight, Moderate, Significant

Temperature Change

Rapidly rising or falling temperatures are a hallmark of big weather changes, indicating underlying shifts in barometric pressure. Extremes in temperature, not just changing temperatures, can also affect the potential for feeling aches and pains. Low temperatures may trigger migraine headaches, exacerbate circulatory conditions and contribute to arthritic joint stiffness. Cold weather has also been associated with an increase in asthma-related hospital admissions.

The four levels of the Temperature Change scale are: Steady, Slight, Moderate, Significant


Classic! Inspired by all of the “Sh!t people say” videos going around these days.

Right on LymeeLiz. Thanks for the creativity.