First Rheumatoid Arthritis Awareness Day is February 2nd

 Posted by at 8:47 am  Rheumatoid Arthritis, Uncategorized  7 Responses »
Jan 292013
 

Kelly Young, the inspiring author of RA Warrior and founder and patient advocate for the Rheumatoid Patient Foundation (RPF) asked me as a Rheumatoid Arthritis (RA) blogger to get the word out that RPF has established the first-ever Rheumatoid Arthritis Awareness Day for this coming Saturday, February 2nd, 2013!

Kelly and the RPF have been working hard to raise awareness of how the chronic illness of Rheumatoid Arthritis differs from the more commonly known type of osteoarthritis. With awareness and education of the differences, patients of RA, or rheumatoid disease, will have better access to “disability accommodations, clinical care, healthcare reimbursement and research funding”.  Critical components of care we may not want but will eventually need just to get by.

I kindly request that you read my story and share RPF’s press release on your blog or other social media.  It takes a few seconds to share the information, you never know who you may be helping by spreading the word. A newly diagnosed patient who feels scared and alone, not knowing how this disease will impact them.  A mother of a child with Juvenile Rheuamtoid Arthritis who watches her child experience physical pain and fatigue that prevents the child from running, jumping and playing like other kids.  A bed-bound patient who is in too much pain to be able to get out of bed and take care of themselves.  Together we can raise awareness of Rheumatoid Arthritis, an “invisble illness” in its appearance but very debilitating to the patient and those who love them and watch helplessly.

 

How Does It Feel to Have RA?

How does it feel to not be able to run without pain and play sports with my kids? How does it feel to not be able to lace my fingers between my husband’s when we hold hands? How does it feel when I have surgery on my right foot and can’t walk with my baby in my arms? How does it feel needing surgery on my right hand because my tendons slipped out of place just trying to buckle my wriggly son into his car seat? How does it feel to walk down the hall at work in tears and have an elderly woman ask me if I am ok and if she can help me?

It hurts.  Emotionally and physically.

 

What Can I Do?

I can stay positive, focus on what I can do and who I can help. I can adore and take care of my kids and husband to the best of my ability. I can not let RA defeat my spirit. I can help raise awareness in the hopes that one day a cure is found.  I can educate others on how it feels, give a glimpse of all the ways RA impacts me so that researchers and doctors can figure out how to help so many others like me.  I can support the RPF in their endeavor to raise awareness.  I can help fight this disease, can’t you help me too?

What Can You Do?

1. Read the press release copied below or at Rheumatoid Patient Foundation’s website.
2. Find more ways on how you can help raise awareness leading up to and on Rheumatoid Arthritis Awareness Day, February 2nd.
3. Share my blog post on your social media platforms using the buttons at the bottom of the post or via email.

Thanks for taking the time to read and raise awareness for a cause near to our family.

 

 

 

RPF’s press release copied below (cause I REALLY want you to see it!):
FIRST AWARENESS DAY FOR RHEUMATOID ARTHRITIS ESTABLISHED BY RHEUMATOID PATIENT FOUNDATION
January 22, 2013 in Events, Exciting, Press Release

Patients Increase Public Awareness of Underestimated Disease

Rheumatoid Awareness Day
January 22, 2013 – Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.

February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. “Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow,” says Kelly Young, founder of the RPF. “It’s impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. For most patients, current treatments neither relieve all symptoms nor assure a healthy future. Remission is rare[1]. Rheumatoid disease affects about one percent of the world’s population, with 1.6 to 2 million Americans currently diagnosed. Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men[2].

Rheumatoid Awareness Day comes at the start of Heart Disease Awareness month, underscoring a serious aspect of rheumatoid disease: heart involvement. Studies show that rheumatoid disease may affect the heart prior to diagnosis[3]. Rheumatoid patients have higher incidence of stroke and atrial fibrillation[4] in addition to the specific effects of the disease upon the heart itself[5]. A study conducted by Mayo Clinic[6] reported that rheumatoid arthritis patients were twice as likely to experience silent heart attacks and sudden cardiac deaths.

The Rheumatoid Patient Foundation will support the first annual Rheumatoid Awareness Day with a campaign aimed at raising awareness and educating about rheumatoid disease. RPF encourages both the rheumatoid patient community and the public to get involved by sharing educational resources, promoting awareness messages via social media, participating in a live online chat and a matching donation opportunity. For information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

Rheumatoid Patient Foundation

RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow us on Facebook http://www.facebook.com/rheumatoidpatientfoundation or Twitter http://www.twitter.com/RheumPF.

###

Contact:

Kelly Young
PO Box 236251
Cocoa, FL 32923

[1] Prince, F et al. Arthritis Research and Therapy. Sustained rheumatoid arthritis remission is uncommon in clinical practice. http://arthritis-research.com/content/pdf/ar3785.pdf
[2] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1
[3] Kerola, A et al. Annals of Rheumatic Diseases. 2012. Cardiovascular comorbidities antedating the diagnosis of rheumatoid arthritis. http://ard.bmj.com/content/early/2012/11/22/annrheumdis-2012-202398.abstract
[4] Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257
[5] Young, K. 2011. Rheumatoid Arthritis Warrior. 20 Facts About Rheumatoid Heart Disease. http://rawarrior.com/20-facts-about-rheumatoid-heart-disease/
[6] Science Daily. 2005. Mayo Clinic Finds Rheumatoid Arthritis Patients At Higher Risk For Unrecognized Heart Disease And Cardiac Sudden Death. http://www.sciencedaily.com/releases/2005/02/050204121639.htm

Rheumatoid Arthritis Fevers and Overcoming Illness

 Posted by at 8:59 pm  Rheumatoid Arthritis, Uncategorized  10 Responses »
Dec 072012
 

Getting sick is no fun for anyone. Having Rheumatoid Arthritis (RA) has added a new dimension to even catching the simplest of colds and changed the way I get sick, how long I endure the illness and how I feel during the ailment. While I don’t intend this to be whiny, I do try to share my experiences with others who may deal with RA or possibly increase awareness for those who care for someone with RA in the hopes that it will help someone.

RA is a disease of the immune system in which the patient’s faulty immune system attacks the patient’s joints. . The reason that the biologic drugs (such as the Remicade infusions I take) work so well is because it suppresses the overactive immune system which provides the patient relief from the joint pain, stiffness and swelling. The consequence is that patients can catch viruses easily and it takes a longer time to recover.

As the cold and flu season is upon us, it is virtually impossible for me to emerge unscathed. Early December and I am already down with my first sickness. Besides the obvious cold symptoms of hacking cough, runny nose, sore throat and chest congestion, RA adds total body joint pain, stiffness and fatigue to my symptoms. I cannot get out of bed when I am sick and sleep all day. For someone who is always on the go and willingly takes vacation days from work just to do housework, it takes a lot to keep me down. RA has got my number.

To make the disease more frustrating is the subject of “fevers” and whether or not I am “sick.” We all learn that a normal body temperature is 98.6 and anything over 100.5 (about 2 degrees higher) is considered a fever that keeps you home from work or school. I have never been one to be like everybody else, so I suppose the same applies to my normal body temperature. When I was trying for months to get pregnant, I learned that my normal body temperature is in the 97 range (usually 97.2). Only when I am ovulating, would my temperature hit 98 degrees. When I feel sick, my temp may only get to 99 degrees as it has been this week, but I feel absolutely awful.

The rheumatologist and non-RA sufferers look at me like I am nuts thinking I am not sick since my fever is not “high enough”. How come my body temp has to be 3 degrees higher than normal to be taken seriously that I am sick? Sources show that these low-grade fevers are also symptoms of RA and the body’s response to inflammation. It certainly explains why when I have a low-grade fever, I am in so much pain and stiffness that I cannot get out of bed. Thankfully, despite her not believing me, my doctor gave me a prescription for an antibiotic and I am already feeling better, confirming I do know my body better than she does.

Perhaps it is difficult for my rheumatologist to empathize with my condition. I believe I know my body and its limits better than anyone else, despite what medical textbooks might say. Please do not dismiss how I feel. If it was your daughter looking back at you, could you be so cold? Would you tell her she does not know what she is talking about? I dare those doubters to change places with me and see how it really feels to have RA. Of course, I would not wish this disease on anyone.

RA is one of those “invisible illnesses” that you may not think someone has at first glance. Empathize rather than judge, you never know what someone else is enduring. I dare you to look closer or listen harder before rushing to judgment.

I am not a victim, I do not play sick to get sympathy. I am tough, I endure RA and I believe God gives us what we can endure. If it’s a choice between my kids or I getting RA, I am glad God picked me. My heart goes out to those parents who have kids dealing with juvenile arthritis. I hardly ever go against doctor’s orders or question their diagnoses but I am glad in this case I stood up to my doctor and asked for the antibiotic.

Check out my RA resources page for educational resources and blogs by RA patients. I love Ra Guy’s 60 second guide to RA and You Know You Have RA When… pages for bringing some humor to help cope with this disease.

I will continue to learn about my RA, what triggers my flares, ways to ease pain relief and cope with it emotionally. If you need help with understanding RA, I hope you will ask me anything. I hope to share my story with you as I hope you share yours with me, what helps you cope, or other resources to add to my list. It’s nice to know we are in this journey together.

Do you get low-grade fevers? How does it make you feel? Do you ever feel like your doctor doesn’t believe you or downplays how you feel? How do you deal with it? I love to get comments and would love to hear from you!

Tanya

My Weekend with RA: Like an Episode of “Survivor”

 Posted by at 4:35 pm  Rheumatoid Arthritis  8 Responses »
Nov 302012
 

Reposting this as we are coming up on another weekend, originally posted in September 2011…stay tuned for the 2012 update below it

Weekends are like a game of “Survivor” for me. Rheumatoid Arthritis does not allow me to run very fast or for long time or even sometimes even keep up with 3 very active little boys. So I have to “Outwit. Outplay. Outlast” better than them. I am on hopefully the downswing of an RA flare that I’ve
had the past 2 days…those times when my joints stiffen, it hurts to do the simplest things and my body just shuts down with overwhelming fatigue. I resisted the urge to just laze on the couch and veg them out in front of the TV today. So, this morning I was able to take my kids to the park, the library and on an errand to Target. My boys played hard while I pushed my littlest daredevil in the swing at the park. Thank heavens my oldest is such a great kid and able to help chase after the younger ones in my efforts to tire all 3 out. We were at the park for only 30 minutes but I so enjoyed watching them play on a beautiful, but hot, morning. Of course, I HAD to go to Target since our coffeemaker called it quits during the week. That is what we call a defcon 5 situation in our house when there is no coffee or milk! My mission was accomplished, my boys were tired and pin drop quiet on the car ride home. I fed them lunch and the youngest (codename: Daredevil) has been napping for 2 hours…priceless! So that’s my small victory, for now I’ve outlasted them. Uh oh, I think I jinxed myself, Daredevil is awake. Time for Round 2…wish me luck! Oh yeah, this kid is recharged and ready to go!


December 1, 2012

As it turned out, the kids wanted to return to the same park today. See how they’ve grown? Thankfully it was beautiful out being the first day in December and I was able to take them outside. This fall has been very cold and overcast which causes me more pain, stiffness and consequently more depression. I need the sunshine and so do these happy guys! I love that Daredevil (my youngest) actually wanted to push both his big brothers on the swing! I bet THIS will make him tired, getting him to nap should be a breeze! Hope this beautiful weather continues, kids and I both need it!
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I would love to hear from you! What are your ways to keep up with your kids or to entertain them as the days get colder? What small victories would you like to share, something you checked off your to-do list? Something you were proud of yourself for today? We all have them, let’s celebrate them!

Tanya

Reality Check: Supermom to RA Flare

 Posted by at 9:03 pm  Rheumatoid Arthritis, Uncategorized  3 Responses »
Jun 092012
 

Originally posted 2011…

Rheumatoid Arthritis (RA) flares are not as fun as a “flare” might sound. If you aren’t familiar with RA, its an autoimmune disorder where the body’s immune system attacks joints throughout the body. I am on some very strong disease-altering medicines to give me a great quality of life, most of my joints are pain free most of the time (thank goodness for insurance!). My hands and feet have obvious permanent damage and adapting to using my misshapen hands and stiff feet have become my new “normal.” Sometimes I am so focused on being Supermom, that I forget I have this disease, even if for a moment.

During a flare, all my joints ache and stiffen, my body feels fatigued and just shuts down, zapping all my energy. I have trouble walking. I guess its hard to describe pain effectively but it affects what I can do and how I sleep (or really, don’t sleep). It’s not only hard physically but emotionally, my reality check that I am not “normal”.

Having this disease for the past 10 years, I have gotten better at figuring out what causes my flares….hormones, stress, rainy weather, and the cold.

I guess it should not have surprised me then today, when my monthly flare started as I walked into the grocery store after a rather full and frustrating work day.  I think my amazement was how suddenly it came on.  One minute I was driving home in no pain, motivated to cook dinner, I step out of the car to go to the grocery store and my hips and knees lock up and have that dull ache that signals a flare for me.  I was tempted to give up and go home, that’s how suddenly the pain attacked me.

But I worked through the pain, finished shopping slower than usual and made my boys a simple, rather healthy dinner.  Superhubby did the dishes, watched the kids and remembered to give me a fish oil pill to help fight the inflammation. For those simple and very valuable acts of love, I am grateful for my supportive Superhubby.

I write this with tears in my eyes from the pain and frustration of enduring this disease. Tears of thankfulness for my amazing family. So much for the gazillion things I planned to catch up on tonight, Supermom will just have to wait till this passes. Until then, my “small victories” get even smaller and I do the best I can. I rest up and focus on just being with my family and appreciating those smiling faces that I work so hard for.  RA is forcing me to take a break and focus on what makes me most happy…my family.

The Joy and Light in Their Eyes

 Posted by at 9:21 pm  Family, Rheumatoid Arthritis, Uncategorized  6 Responses »
Apr 252012
 

Originally posted March 14, 2012…I had my remicade infusion yesterday for my Rheumatoid Arthritis. The treatment wears me out but normally after some good rest, I am back in full swing the next day. However, today was very difficult for me, I could hardly walk at work, I wrote slowly, I even drove slowly! All my joints were stiff and painful, they would just not move. It gave me flashbacks to my low point before my diagnosis when I cried from the pain walking down the halls at work and an elderly coworker asked me if I was ok as she passed me.

I am usually attuned to what causes my RA to flare, but today I couldn’t pinpoint the reason. I came home from work and lied in bed for almost an hour until it was time to pick up the kids. I was feeling quite depressed and having a grand ‘ole pity party for one.

That is, until I drove up, parked in my handicapped spot outside Superstar’s classroom and saw this….

It may be a dark picture but you can see his bright white smile as he sees my car which is reflected in the window. Superstar’s genuine excitement to see me after a long, hard, painful day erased my sadness instantly.

As if that wasn’t heartwarming enough, we walked to Daredevil’s classroom. Since he was 1, I have diligently been trying to teach him animal sounds. As the kids’ bathroom is a jungle theme, after their bath we (well, really just I) make monkey noises and Daredevil laughs at me, not making a sound himself. Low and behold, Daredevil walks up to me in his class today, stuffed monkey in hand, and does the best monkey impression! It was music to my ears. Really, I do just cherish these small precious moments that make me happy and proud to be a mom, RA and all. We call these kids our mood boosters, when they are happy, it is simply contagious.

I was inspired today by a post at Click it up a Notch today that talked about lighting and capturing the catchlights in the subjects eyes. I love taking pictures of my kids and since I wanted to capture the memory of Daredevil’s first monkey sounds, I wanted to take a picture for this post. Of course, the child who normally says “cheese” when a camera is pointed in his direction, suddenly got feisty and didn’t want me to take his picture. He also would not do the adorable “ooo ooo” face that accompanied the monkey sounds.  With the car door open and phone ready, him looking into the light behind me, I captured the naughty little devil with catchlights in his eyes. I love that! I did it!


Small victories all over the place for me this evening, just from focusing on the joy and light in my little guys’ eyes! Let’s hope tomorrow is a brighter day!

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