RA Blog week Day 5: Blogs I read this week


I love having the opportunity to be apart of RA blog week.  Not only does it encourage me to focus on my experiences with RA, but it also gives me a chance to read blogs by other patients that give me great perspectives Thanks to Rick Phillips at RADiabetes for the invitation.

Some blogs that I really enjoyed this week:

I was moved by The Life and Adventures of Cateepoo‘s Starting Story on Health Central.

I enjoyed Here’s your gold watch -Rheutired’s  “Same Song, Second Verse – An Active vs Reactive Patient

Rick Phillip’s Biologics can be Scary  made me feel validated in my own personal journey with biologics.  It’s nice to know I’m not alone.

One of my favorite bloggers is Arthritis Chick.  I always feel like she is so honest, detailed, and spot on with her blogs.  Her The pain of pain meds is an great telling of being a patient with pain meds.

Thanks to all who participated and thank you for inviting me.


I am not a junkie…


I am reblogging this for Day 4 of #RABlog week. Today’s topic is “The Pain of Pain Meds”. I wrote in February and think it fits todays topic. To read the reblog click on “As my joints turn”.  To learn more on this topic, check out : http://radiabetes.com/blog_week16/day4.html

As my Joints Turn

Let me explain…..

Yesterday was a bad, horrible, no good, rotten, painful flare-up day.  On a scale from 1-10, my pain was a 20.  By the time lunch time came around, I was sitting with my head between my legs trying to get the nausea from the pain to pass.  My hands were red and swollen and my neck and hips had a intense stabbing-like pain. I got home from work and didn’t leave my couch until bedtime.  I had to crawl up my stairs to get to bed b/c my joints couldn’t manage the steps.  I then had a hard time falling asleep due to pain. I gave myself my injectable biologic drug and hoped to wake up refreshed and feeling better.  Unfortunately, that did not happen.  I woke up with still swollen hands, wrists, and elbows.  I hurt.  I called off from work because I knew driving would…

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RA Blog Week Day 3: Biologics are Scary


Nine years ago:  I remember the day my rheumatologist recommended that I begin taking a biologic drug.  I freaked out.  I felt like it meant that my disease was getting so bad that I had no choice.  I knew little about biologic drugs and thought it was a “last resort”.  This was before I knew about the antiquated process called “Step Therapy”.  All I knew is that I was being instructed to give myself a shot.  I’m not totally afraid of needles, but I wasn’t fond of having to give one to myself.  I was also handed a stack of information about the drug being prescribed.  I read the comprehensive information and cried as I read about the possible side effects.  It was overwhelming.  It was defeating.  Biologics were truly scary to me at that point.

Today:  I’m on my fifth biologic drug.  It took me almost 9 years to find a drug that worked well for me.  What I didn’t know was why I had to follow the Step Therapy process.  What is step therapy?  Well, it’s an antiquated  system that insurance uses to manage risks and costs.  Insurance requires that your doctor prescribes the lower costing drug in a certain class and only progress to a higher costing drug after the cheaper drugs fail.  I understand this from a business standpoint, but as a human being who spent many years trying to find a drug that brought relief, I’m livid.  That to me is the most scary part:  My insurance, not my rheumatologist, controls the drugs that I can take, regardless if it is the right one or not.  If I had only had access to this drug 9 years ago, I may not have had to live through so much pain.  The damage from swelling could have been avoided.  It’s scary that I had the misconception that biologic drugs were for people who had no other choice.  I didn’t realize how much the right one could decrease the symptoms and increase my mobility.

That being said, I am very aware of the serious side effects. About three years ago I had a very scary experience taking a biologic drug. This was my 4th biologic and first infusion drug.  I was definitely nervous, but desperate to feel better.  I had my first infusion and within 3 days I saw my ankle for the first time in 6 years.  It was a good looking ankle.  I liked it!!  I then had an issue with my blood pressure and had to put off future infusions for almost 3 months.  I was so excited because the three months of no medication was taking a toll on me.  I was sitting in the recliner in my doctor’s infusion room and the bottom of my feet started to itch.  It was bugging me, but no big deal.  During the infusion, I had an appointment with my rheumatologist.  The nurse walked me to an exam room.  I noticed my palms were itchy and my rings felt tight.  I walked to the sink to run water over my hands to get the rings off and I noticed I was getting large red welts up and down my arms.  I walked to the door and my doctor saw me.  I said, “I think I’m having a reaction”.  She told me to sit down and she stopped the infusion drip.  Next thing I know, I’m on my back, blood pressure is dropping and I was going in and out of consciousness.  I had an allergic reaction and it was bad. I was given some sort of medication (I really don’t remember what it was) and I slowly regained consciousness.  I was very shaken up and feared that I would never see my ankle again.  I had a drug throw me in anaphylactic shock and all I could think about was not seeing my ankle again.  Hours later, I realized that I could have possibly died if I wasn’t surrounded by medical professionals but in the moment, I was crushed that the first drug in 6 years to help me feel good tried to kill me (kind of /sort of). My rheumatologist assured me there were other options.  She was right.  I’ve been on my current biologic drug for three years.  I still have flares, but not as severe as the years prior.  I am still walking without a cane.  I am still able to work full-time to get insurance.  I’m still moving.  The potential side effects of:  serious infections, allergic reactions, cancer, headache, upper respiratory tract infection, sore throat, and nausea do scare me, but not as much as being disabled.  I’ve weighed my options and am comfortable with my choice.

Biologics may be scary, but I’m willing to take the risk to maintain a good quality of life.

I am proud to be apart of the 2nd Annual RA Blog week.  Please take the time to check out the other blogs posted today!  http://radiabetes.com/blog_week16/day3.html


RA Blog Week Day 2: Active vs. Reactive Patients


I’ve written previously on this topic.  I became a patient advocate in 2009.  From that point, I began to learn the ins and outs of insurance, medicine, pharmaceutical companies, doctors, etc.  I previously had no interest in learning about these things, but like most people with chronic illness, I learned thatI had no choice.  Prior to being a patient advocate/informed patient, I was a passive patient.  I let the doctors make decisions for me without argument.  They went to medical school.  They knew more than I do, right?  My first negative experience being a passive patient with was an endocrinologist.  I had been on Beta blockers for my Graves Disease.  After 5 months on this medication, I woke up in the middle of the night and promptly passed out in a bathroom and sprained my wrist.  I called my endocrinologist and she blamed the situation on having three drinks 5 hours prior to the incident.  I knew in my gut that wasn’t the case.  I asked her about the Beta blockers and she yelled at me for still taking them.  I recall clearly her saying, “Why are you still taking that medication?”  to which I responded, “because you didn’t tell me not to”.  My thyroid levels had evened out, but I thought she would tell me when to stop taking the beta blocker.  She put the blame directly on me.  Trust me when I say, I’ve never not followed a doctors directive regarding medicine.  It was in that moment of being blamed for a mistake made by my doctor that I never took a medication without asking multiple questions again.

About 3 years ago, I was having issues with my blood pressure.  It consistently ran about 150/90.  I was concerned but the physician’s assistant at my doctor’s office assured me I was fine (the doctor confirmed this, too).  I began taking Actemra infusions for my RA  and a side effect was high blood pressure.  I knew I would not be able to continue taking that serious drug, that allowed me to see my ankle for the first time in 6 years, if my blood pressure was too high.  I went into the doctor, met with the PA and expressed my concerns and explained I was trying to be proactive by better controlling my blood pressure.  He said if they put me on a higher dosage of blood pressure  medication, I would pass out.  I left feeling dejected and worried, but I trusted him as a medical professional.  Two weeks later, I was in the ER with blood pressure that was 200/125.  It turned out that my body no longer produced renin and I had issues with my left renal artery (mild stenosis).  This damage was from my blood pressure that was running too high for too long.  I was devastated.  After 20 years with that medical practice, I never spoke with them again.

This began my journey as an active vs. a reactive patient.  I no longer wanted healthcare to happen to me, I wanted it to happen with me.  I began going to the doctor with questions written down, photos of swollen joints to document and would write down the doctor’s responses, too.  I began having all of my doctors copied on my visits because I wanted NO ONE left out of the loop.  I would document all of my discussions about specialist concerns with my new General Practitioner.  I make phone calls to get test results, I log into patient portals and make copies of blood work, etc. to take to my doctor’s appointments.  I’ve taken the time to understand how my biologic drug works and the potential issues that may arise by taking it.  I fully understand the seriousness of these side effects, but I like to be able to walk, so I take the chance and feel lucky that I am still mobile.  My role as an active vs. reactive patient has evolved over time.  My rheumatologist and all of my doctors are my partners now.  It’s a mutual respect for ideas and concerns regarding my treatments.  I will never walk out of a doctor’s office feeling dejected or like a hypochondriac again.  There may be times I am wrong, but I will always follow my gut instincts.  They haven’t failed me yet.

I am proud to be participating in the 2nd Annual RA Blog week.  Read more amazing blogs here:  http://radiabetes.com/blog_week16/day2.html



Starting Story

I am proud to participate in the 2nd Annual RA Blog week.


When I was 14 years old, I woke up one morning and my knee hurt. Hurt to walk, hurt to bend, and even ached when I was sitting down. Funny thing was that I didn’t have an accident, I didn’t bang it. This pain was there for no reason. I complained enough over a few weeks that my parents took me to an orthopedist get it looked at. I believe at first, I was told I had growing pain. When the pain became chronic, I was told it was tendonitis. I had to take ibuprofen and wrap my knee. I remember spending my summers on crutches, miniature golfing with my friends and hobbling around the mall. I always had the feeling that people thought I was faking it. I knew I wasn’t, but there never seemed to be a reason for my sore and swollen knees.

In college the flares would come and go. I had to walk a lot on campus and it took its toll on my knees. By my junior year, an orthopedic doctor suggested surgery. The MRI was unclear, but he was sure there was a tear. Well, guess what? There was no tear. I was told there was some scraped ligaments from a sharp end of my kneecap, but otherwise no tear. I was told I’d be good in 2 weeks. Well, two months later and I was still limping and in pain. My mom called the surgeon and he said some people take longer to heal. The whole time I had a disease ravaging my connective tissue but no one identified it.

In my early twenties, I was taking classes again and working full-time. I remember being at work and unable to pick up a carton of milk to pour for my preschool students. I ran a fever daily and was in so much pain that I could barely function. The word fibromyalgia was mentioned but I don’t recall being given a definitive diagnosis. My mom called me at work to tell me all my blood work came back and my doctor said I was as “Healthy as a horse”. My mom was thrilled, but all I heard in my mind was “Everyone thinks you are a hypochondriac”.   My doctor told me that I had a hard time handling stress and I needed to work out more. I blamed myself for all of it. I even dropped out of school and moved to Florida to get away from people who thought I was faking it.

The next few years passed with bouts of flare ups in my knees. In 1999, I was diagnosed with Graves Disease (a hyperthyroid disease with an autoimmune component). The process of Radio Active Iodine caused me to spiral with my thyroid levels. I swung so far into hypothyroidism that I began having severe shoulder pain.  It went away when my levels evened out.  Two years later, I began having a similar pain in my shoulder.  I ignored it for a month thinking it was my thyroid.  The pain never went away and became so debilitating that I could hardly drive.  It all started in March of 2001 and it wasn’t until December 2001 (after 3 rheumatologists, a chiropractor, a general practitioner, and a holistic physician) that I was given a definitive diagnosis of Sjogren’s syndrome and most likely RA.  It only took 17 years to have someone tell me that I was not a hypochondriac!

In the years that followed the onset of disease, my diagnosis has changed a few times.  It’s been a long and painful road over the past 16 years.

To read more starting stories posted during RA Blog week go to:  http://radiabetes.com/blog_week16/day1.html

Looking forward to a great week!


The road to Washington- A Simple Task

It took me almost 20 years to get a diagnosis.  My symptoms started at age 14 and came and went throughout my teens and 20’s.  Finally, in my 30’s, the symptoms stayed and completely debilitated me.  Most of the time, autoimmune arthritis diseases are chronic yet invisible diseases.  There is always the phrase “But you don’t look sick” when you tell someone you have an autoimmune disease.  When my disease hit me hard, it caused a pretty bad limp.  I couldn’t hide my struggle.  What was worse was that some days I limped and others I did not.  I was questioned, talked about, and made to feel like I was a hypochondriac.  I struggled with pain for almost 20 years before finding out the cause.  I then met other patients who went through similar struggles. No one should have to wait 20 years for a diagnosis.  No one should have to live with 20 years of damage from a disease that destroyed joints in the body making daily living skills almost impossible.  I wanted to see a change but had no idea what to do!

I slowly entered the world of advocacy in 2009.  I started out online in health forums on social media, then volunteered with IAAM and and cofounded IFAA.  Soon I was doing public speaking engagements at health and pharmaceutical conferences.  I was amazed that people wanted to hear my story.  I accepted opportunities as they popped up and I learned so much from other patient advocates as they shared their stories. In 2013, I heard about an amazing way to share my story in rheumatology community:  The American College of Rheumatology’s “Advocates for Arthritis” event.  This is an annual event in which rheumatologists and patients from all over the United States, join forces to meet with members of Congress and the Senate to advocate for issues relating to the rheumatology community.  I was chosen to represent the state of Pennsylvania with another RA patient, Margaret Storck.  We were joined by a team of rheumatologists, Dr. Christina Downey, Dr. Prateek Gandiga (Fellow-in-Training), and Dr. Devon Storck (Fellow-in-Training).


Kelly Conway, Dr. Prateek Gandiga, Margaret Storck, Dr. Christina Downey, and Dr. Devon Storck on Capitol Hill, Washington DC




We met with two PA Senators and three Congressmen to discuss three issues pertaining to the rheumatology community.


The first issue we addressed was to urge the Center for Medicare and Medicaid Services (CMS) to significantly modify or withdraw the Part B Demo.  This demonstration is proposed to drive down the cost of drugs; however, the reimbursement schedule would negatively impact many doctor’s offices from being able to continue in-office infusions.  Learn more here: http://bit.ly/CMSpartb

The second issue we discussed was to ask Congress and the Senate to repeal the Medicare Therapy Cap.  This cap would allow only $1960 allotted to patients who require physical therapy and/or speech therapy.  Being a speech-language pathologist, this is an issue I am familiar with because it impacts people not only rheumatology patients, but also those suffering from stroke, ALS, MS and many others.  Cutting off these essential therapy treatments is harmful and can lead to disability for many patients in the long run.  See various organizations that are fighting against this issue:  http://bit.ly/therapycap  This is truly an issue that can negatively impact millions of Americans.

Finally, we asked the Congressmen and Senators to invest in medical research.  We requested

  • $20 million in funding for dedicated research program at the Department of Defense to better serve veterans and active service members living with rheumatoid disease.  Arthritis is the second leading cause for men and women to be discharged from the military.
  • $34.5 million in funding for the National Institute of Health for 2017 FY Labor, Health, and Human Services
  • funding for NIH funding included in 21st Century Cures legislation
  • $13 million in funding for the Centers of Disease Control and Prevention Arthritis Program in the FY 2017 Labor HHS- Appropriations Bill

Sounds like a lot of money, right?  Did you know that Arthritis is the #1 cause of disability in the United States? Did you know that for every $1.00 invested in research the community makes $2.00 back?  I didn’t know this, but am glad that I do now.  Did you know that a many veterans are coming back from deployment seriously disabled by arthritis in their 20’s and 30’s as a direct result of the work they did protecting our country?  Getting osteoarthritis at that age is not the norm.  Did you know that the only treatment for people with osteo/degenerative arthritis is pain medication and eventual joint replacement?  We need to have research find better treatments to prevent arthritis from becoming debilitating.

At every meeting, Peggy and I both shared our personal stories.  We shared our struggles with medication, struggles with diagnosis and treatment, and how autoimmune arthritis diseases have impacted our daily lives.  Our rheumatologists highlighted the need for research and the need to make medications more affordable/available to the patients.  We wore bent forks on our clothing to represent the simple tasks that are hard for patients living with rheumatic diseases.  acr_guaranteedaccess_fork-1024x806

We mostly were well received by most of the legal aides we met.  Some expressed concern over the cost of funding these bills BUT in reality we end up paying for the damage caused by arthritis in the long run.  Wouldn’t it make more sense to be proactive to slow the damage and keep more Americans healthy?  Well, I hope they see it that way.  I will be following up with the liaisons I met to remind them how important these requests are for millions of Americans living with rheumatic disease.

The best part of this entire event was that I got to share it with my dear friends Lynn and Kevin and their son Sean, who was diagnosed with Ankylosing Spondylitis 4 years ago.


Sean, Lynn, and Kevin

Sean is now a junior in high school.  He is considering a career in pediatric rheumatology in the future.  I’m so proud of this young man for taking up advocacy at such a young age.  His impact on this event is probably bigger than he realizes.  Many people do not know that children can also get arthritis which includes an autoimmune disease component. Sean’s presence on Capitol Hill opened many eyes to the realism of arthritis for millions of children.  I am proud of you buddy!  I’ve never had a chance to share my passion for advocacy with any of my close family and friends before, so their presence meant the world to me.


Sean and Aunt Kelly

The only bad thing about this event is many patients never heard of the ACR Fly-in for Advocates for Arthritis.  So I’m here to tell you…..make sure you apply next year!!  This year 31 states were represented on Capitol Hill.  How amazing would it be for all 50 states to have representation in the years to come!  Request for applications usually come out in June each year.

I rested a lot prior to the event because it requires a lot of walking.  I bought sensible shoes (kind of cute, too!) and rested a lot the night before so I would be ready to go.  My legs started out like this:           14292417_10211097162331144_532601458713160013_n

but ended up like this:       14329955_10211098824852706_214170917127780664_n

It was totally worth the pain and swelling.

This was my second time participating in this Fly-in and I can’t wait to participate again in the future.  Thanks to the ACR for allowing me the opportunity to represent my state of Pennsylvania in Washington DC to advocate for my fellow #spoonies living the #chroniclife with various types of arthritis.

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I’m honored. Thank you!

This blog was nominated for Wego Health Activist Award this year.  I was also nominated for “Best Kept Secret”…shhhh!  lol  Wego is a fabulous organization that links health care advocates  with patients via social media.  They have an annual award ceremony to honor “Health Activists who enrich the lives of others by sharing their experience, knowledge and strength”….I’m humbled that someone would nominate me for anything let along both categories.

Honestly, I’m so thrilled!  If you are so inclined, I’d love if you could endorse me by voting!  Here is the link:



Thanks so much!  Remember to endorse all of your favorite Health Activists on Wego’s site!  You can vote daily!  Thank you so very much!

A patient goes to Washington…

A few years ago, I learned about the American College of Rheumatology (ACR) event called “Advocates for Arthritis”.   The ACR ask people from all over the US who live with arthritis to apply to attend the event held in Washington DC.  It is an “annual event that brings together rheumatology professionals and patients to advocate on behalf of the rheumatology community.” (- See more at: http://www.rheumatology.org/Advocacy/Advocates-for-Arthritis#sthash.GUjKOaFl.dpuf).  We attend trainings on issues affecting doctors and patients within the rheumatology community then meet with our representatives in both congress and the senate to let our voices be heard.

capitol hill

ACR #AdvocatesforArthritis 2013

I was honored to be a part of this event in 2013.  I had told my best friend’s son about it.  He was diagnosed with ankylosing spondylitis a few years ago and is interested in becoming a rheumatologist.  He told me he was interested in attending some time, so this year, we applied and were both accepted. I will represent the state of Pennsylvania and he will represent New Jersey.  I’m so excited to have him learn about advocacy and to share this experience with him!

I will keep the blog updated daily.  Wish me luck!  #AdvocatesforArthritis

No zippers or buttons or snaps, oh my!

There is a new clothing craze that is popping up on social media called LuLaRoe .  I admit in the beginning, I was not liking the crazy patterns.  I knew the leggings were fabulous, but I doubted everything else.  A friend got me to join her online party and well….I went  CARAAAZEEEEEE seeing the clothes for the first time.  The clothes were soft, well made, and way more stylish than I originally thought.  All consultant I have met all say the same thing, “The clothes are very forgiving.” (that means it covers up my rolls). I ended up purchasing leggings, dresses, and tops and kept doing that over and over (I was invited to 6 parties in the month of August alone).  The clothes are casual enough to wear every day but easy enough to dress up for work. I’m hooked!

Why am I so excited (other than the fact I am a shopaholic?)  Well, this brand does not have zippers, or buttons, or snaps on its clothing.  You slip it on and go.  Morning stiffness (a symptom of RA and many forms of Autoimmune Arthritis) is my nemesis.  It takes me almost an hour to get out of bed in the morning.  Not because I am lazy, but because it takes me that long to stretch my creaking joints enough to stand up.  My hands struggle with brushing my teeth so fine motor tasks like buttoning, zipping, and snapping could take a considerable amount of time first thing in the morning. Being able to avoid clothing fasteners that hurt and slow me down in the morning…is an amazing thing.  An amazing thing that I have taken for granted for years.

I have no affiliation with this company.  I’m just sharing a simple #spoonie hack.  Wearing these comfy and stylish clothes is awesome.  I get tons of compliments and I’m dressed in less than 5 minutes before heading to work.  That in itself is a blessing.  14242397_10210994315240031_5362937294631512802_o