Posts Tagged ‘RA’


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.

Be well my friends.


Just Arthritis – NOT.


Saw more logs

Sleep is so important to those of us with an already weak immune system.

It’s no secret that catching major Z’s can be virtually impossible when you have RA (Rheumatoid Arthritis), especially when your disease is flaring. Whatever the reason for not being able to sleep; pain, stress, anger, all of the above; sleep is so important for your overall health. In fact, insomnia can further damage an already dysfunctional immune system.

In Health Monitor’s March 2012 issue of “My Guide to RA”, they share 5 tips to help us Rheumies saw more logs (a fancy way to say “get more sleep”).

1. Cover the basics. Your bedroom should help you relax. Make sure you have a comfortable mattress, high-quality pillows and no clutter.

2. Develop a relaxation ritual. Plan to relax and wind down at least one hour before you go to sleep. This could include dimming the lights, turning off the TV, listening to soft music, meditating, and/or taking a warm bath with candles and a book.

3. Stretch, stretch, stretch! At home—and even on the road when you travel for work – Some make it a priority to take a hot shower each night. And then follow up with a series of stretches, including yoga.

4. Have sleep and pain medications ready. Check with your doctor to identify the appropriate medicine to take in the evening. After three or four nights of poor sleep, some will turn to a prescribed sleep medication—but only after they have gone through the typical routine of stretching and a hot shower. Tim, a man afflicted by RA said “I used to reach for a sleep aid when I could have stretched,” he notes. “It is so convenient to take the pill.”

5. Exercise regularly. “I try to get good exercise during the course of the day. It just makes my joints feel more lubricated,” says Tim, who likes to walk, bike, swim and work out on the elliptical machine. However, he makes sure to work out earlier in the day, as exercising late will stimulate him and keep him awake.

However it is that you choose to stay in shape through exercise and or relax, just make an effort to do it. Your body will thank you and be more apt to rest at night. God knows you deserve it because fighting disease can definitely take a toll on your system. The full article can be found here.


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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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!


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