How to stop kissing frogs…

As a patient, you expect your doctor to be the expert in your medical condition.  Finding a good doctor, especially a specialist, can be difficult.  It’s supposed to go like this:  You go to see the doctor when you are not feeling well, they write a prescription, recommend a treatment, and you go on your way with the expectation that you will feel better soon. This is often, not the case for people with a chronic illness like Rheumatoid Arthritis, Spondlyoarthritis, or Lupus, etc.  Dreading the doctor is a common symptom of fighting a chronic illness.
You see, people with autoimmune issues like RA respond to medications differently.  What works well for one person, gives another terrible side effects or does not work at all.  Sometimes, finding the right medication to relieve your symptoms is a trial and error process.   It can be frustrating, and quite often you end up feeling worse than before you started.  About a year ago, someone asked me why I became a patient advocate.  I responded that health care had to stop happening to me and start happening with me.  Taking more control of my relationship with my doctors is part of that process.
Here are some tips that help me maintain a cooperative relationship with my doctors.

1.  Keep a diary or symptoms log.  Quite often when I go to the rheumatologist it tends to be on the day when I am feeling good, so my doctor doesn’t get to see me when I’m actually not feeling so good.  Subsequently on days when I’m feeling bad my rheumy often doesn’t believe that my medication is working for me.  This is why keeping a symptom diary to document your symptoms over a longer period of time is important for your doctor to see.  There are several apps on the market that can help you rate your daily pain, log your food, take photos of your joints, rashes, etc.  Two of my favorites are:  

My RA by Vectra/Cresendo (
Arthritis Power (

Big Ugly Knuckles 

2.     Photo or video documentation.  Providing your rheumatologist with photos/videos of swelling and or discoloration can really help them to see how your medication is working or not working for you.  A photo is sometimes speaks louder than words.  My RA app allows you to take photos. My cardiologist gave me a hard time about taking so many medications (to treat RA, Fibro, thyroid disease and high BP).  I whipped out my phone and showed her my swollen joints.  She winced and never said a negative word about my medication again. 

Write it down!

3.     Write down any and all questions that you want to ask and/or side effects you are experiencing. Make a point to write stuff down as you think of it.   Often when you get to the doctor’s office, you forget to ask those questions or mention a side effect that popped up between visits.  To put it simply, Brain Fog stinks.  If I don’t write it down, I get all mixed up and forget to ask those specific questions that came up in the 3 month time span since my last appointment.  

4.     You have to find a doctor who is willing to work with you.  Having a good relationship with your rheumatologist is critical for your health.  I kissed a lot of frogs until I found a rheumatologist that actually listened to me.  I left my first rheumatologist after I asked her how long until medication made me feel better.  She responded with, “It took a long time for you to MAKE yourself this sick.  It’s going to take a long time for you to feel better.”  (Blaming the patient…we’ll discuss that topic at a later time!! ) I literally had a breakdown hearing that. I sat in my car in a parking lot and sobbed. If you make me cry, you are not the doctor for me.  I fired her.  
Then I met an amazing rheumatologist who got me to a better level of functioning.  Four years later, she sold her practice and moved so I was on the hunt again.  My third rheumy was a recommendation from a friend.  He reviewed my file then told me I had nothing wrong with me and I should stop taking all of my medication.  I asked for another opinion from someone else in his practice.  That doctor wouldn’t go against the first doctor’s recommendation.  She told me I could “try” going off my medication to see how I felt.  Neither rheumy could explain to me why my joints were all swollen and red, and one of them had no problem telling me “Nothing is wrong with you.”  I didn’t go to medical school or anything,  but swollen, painful joints indicates a medical problem!  If you make me feel crazy, you are not the rheumatologist for me.  I fired them.  Eventually, I found my current rheumy who is amazing.  She looked at my file, examined me and said, “We can do better.” I thank God for her every day.

5.     Make sure your rheumatologist communicates with your GP or other specialists.  Ask your doctor to send a letter to your other specialists after your visit.   This prevents drug interactions and/or miscommunication relating to your illness. These diseases overlap and medications can cause all kinds of trouble.  Open communication between your doctors is critical for good health.  For example: I had been having issues with my blood pressure for about 2 years.  It was running 150/90.  My specialists were telling me it wasn’t good.  My GP’s assistant kept telling me I was fine.  My specialists were not happy.  Finally, I made a specific appointment to discuss my blood pressure because I knew my new biologic would throw my bp even higher.  I was trying to be proactive.  The PA looked at me and said, “If we put you on any more blood pressure medication you will pass out.”  I left deflated because I knew in my gut I had a problem, but after 18 years with this practice, I trusted their judgment.  Two weeks later I ended up in the ER with a BP of 200/125.  I never stepped foot in that GP’s office again.  I take partial responsibility because I didn’t have my specialists report to my GP.  He was out of the loop and the PA wasn’t the right person for me to be talking to.  If my GP had received a letter from my rheumy, gyno, and endocrinologist, maybe he would have listened.   Lesson learned the hard way.  Turns out I had damage to my left renal artery and my heart ventricle wall due to my high blood pressure. The person who needed to hear me, did not.  If you don’t take my concerns seriously and I end up in the hospital, you are not the doctor for me.

Managing your disease can be a full-time job.  Navigating multiple specialists can be especially difficult.  Make sure you make the time to have a good relationship with your doctors.  It goes a long way in helping you find your way to better health.   Hopefully, these tips can help you navigate towards a positive patient-doctor relationship with the doctor that is right for you!


To review or not to review…

I was contacted recently by a company called NatraCure.  They asked if I would be willing to try one of their products for an honest review.  I googled their company and checked out their products that were all geared towards pain relief.  I wasn’t sure which item they wanted me to try, but I agreed after viewing their website.  I was thrilled when they said they were sending me the Arthritis Mittens because honestly, my hands just hurt!  I was really looking forward to trying this product to see if I could get some relief.  The following review is based on my experience with the Arthritis Mittens and may vary from others.

First impression.  The mittens arrived in a small box that seemed to have some weight to it.  They are powder blue with dark blue starbursts.  The instructions indicated that the starbursts turn to “hot” flame when the mittens get hot and fade back to the blue starbursts when cool again.

I thought this was a nice safety feature.  The outer layer of the mittens are very soft.  Cuddly soft and feel really nice against the skin.  There are flax seeds that are pocketed on the front and back of the fingers and the palm and back of the hand.  The seeds also surround both thumbs.  The seeds are what add the weight, but it seems to be well balance and practically hugs the hand and fingers when heated.   So the outside of the mitten…awesome.  Then I felt the inside.  I was shocked to feel a silicone rubbery material inside.  I was turned off at first, but when the mittens are warm, the silicone feels a lot like a paraffin wax treatment.  So soothing.  I feel my hands melt into the gloves.  You do have to play around with the microwave time to get the temperature that works for you.  I was heating them up at the same time, but that did not work very well in my microwave.  The heat lasts between 5-20 minutes.  Obviously, the heat fades over the course of time, but even at 20 minutes, the gloves are still soothing.

My overall impression of the NatraCure arthritis mittens?  I like them very much.

Pros:  Comfortable, soothing, and gel lining does feel like paraffin wax.
Cons: heating time varies and thumb does not consistently get hot.

Overall, I like these mittens and they helped me a lot today since I had to shovel over 2 feet of snow.  Thanks NatraCure.  I’ll put these Arthritis Mittens to good use!  Check them out for yourself.

What is normal anyway?

I was talking to a good friend who also has RA.  I mentioned a big decision I made regarding my career and the feedback I had received.  She said, something like “That is such a compliment to your abilities as a normal person”.  Hmmm….

It sounded strange, but  I knew exactly what she meant.  My normal life isn’t blogged about because it’s mine and kind of unremarkable.   I don’t blog  about how much I love my career, about my love of books that help me escape my crummy disease, my social life that has dwindled, or my family. I blog about life as a person with rotten, horrible, no good diseases.  I blog about living life as a sick person, I blog about my advocacy with IFAA, and I blog a little about caring for my sick pets, too.

I’ve been leading two lives.  By day, I’m a speech-language pathologist who loves working with individuals with communication needs.  I get along well with my colleagues and I love my what I do for a living.  I also have really great friends and family.  My best friends are also speech-language pathologists and special education teachers.  We have so much in common and a long history of friendship, but talking about my illness is not always easy.  My family is my support system, but sometimes it is just too hard to see/hear people I love feel sorry for me when I discuss how my body is feeling. My family and friends are wonderful, but their understanding of living with a chronic illness is limited because thankfully, they don’t have to live with it. So…

…in 2009, I began looking for other people like me via social media.  I found many like minded people on Twitter and Facebook.  I began getting involved in movements and awareness projects and soon my other life as a Patient/Health Advocate was born.

In this life, no one feels bad for me when I vent about flaring.  People understand the drugs that I take and the side effects I experience.  I found understanding with strangers in a similar boat as me.  I help others and vice versa.   I read a meme the other day that says, “I am friends on Facebook with people I know in which I have very little in common.  Yet I know many strangers on Twitter in which I have a lot in common.” Social media made it okay for me to develop my  “patient life” because I was no longer alone in my struggle.

Finding others spoonies has been a main factor in helping me deal with my diseases.  I can read about John Doe struggling with turning on the spigots in the shower, and Jane Doe fighting with her insurance to get approval for her new meds and it makes me feel “normal”.  Strange, right?  Or the new “Normal”?  Some of these “strangers” have made the transition to friends.  Friends who have a common goal to make a difference in the lives of rheumatology patients.  Friends I can vent to about my life with autoimmune arthritis.  Friends who just “get it” when others don’t.   The #rheum community is really amazing in it’s support and knowledge.  Patients who make it easier on the rest of us going through life in chronic pain.  Of course there are some antagonists and bullies, but I keep them as strangers and limit my time exposed to them.  People in my “patient” life know little about my “normal” life and vice versa.  My friends and family probably don’t read my blog or see the work I am doing unless they follow me on social media.  My “selfs” are very separate.

I have no desire to integrate these two lives, but I always try not to neglect one for the other.   At the end of the day, being a patient simply sucks.  Being able to share a joke/rant/comment/question with a fellow spoonie every day, makes it a little easier to handle. I know full-well that being a chronic rheum patient is can be full-time job.  I know so many amazing patient advocates who are able to be professional patients and I admire them greatly.  That life just isn’t for me, right now.  It may be what the future holds for me.  Until then, I’ll keep drawing strength from my fellow spoonies while living my version of normal.

Redefining Research

When you get diagnosed with a chronic illness, you go through various emotions.  I literally went through the stages identified by Elizabeth Kugler-Ross “5 Stages of Grief”.  Denial, anger, bargaining, depression, and acceptance.  Each stage prior to acceptance was painful.  Hell, even acceptance hurt pretty bad.  The life I thought I would have disappeared.  I had to learn to live with my new life.  See I had grown up knowing two women who were significantly impacted by rheumatoid arthritis.  My neighbor and my aunt.  When my diagnosis came, I panicked.  I knew how hard things were for these two women.  I feared that life.

Eventually, I learned how much medicine has changed.  The drugs I was using was much more aggressive at fighting RA than those I saw battling the disease in the 70’s and 80’s.  I slowly learned my life would be different, but it would still be good. Some days are very difficult, others not so much.  Initially, I felt utterly alone in my struggle.  In 2009, I came across other patients living with various types of autoimmune arthritis via Facebook and other social media sites.  I joined the International Autoimmune Arthritis Movement, and eventually cofounded IFAA (International Foundation for Autoimmune Arthritis).  I became an advocate for patients living with RA.   I wanted to see a change in how patients are diagnosed.  How patients are involved in research, and how patients can let their voice be heard.   I speak at some conferences to spread awareness, but for the most part, I do most of my advocacy from the comfort of my sofa.

Now IFAA is helping other patients let their voice be heard.  We are redefining research by putting patients in the driver’s seat.  Why is research so important?  We need to get the patient voice involved in the research process.  Who knows our symptoms better than we do?  On January 4th, we are launching ACT (Autoimmune Community Team) in which patients diagnosed with Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), or Axial Spondlyoarthritis (axSpA/nr-axSpA) will get an opportunity to lend their voice to change research standards and guidance regulations now and in the future. The project starts recruiting January 4, 2016  so if you are diagnosed and want to change the world from your sofa too, sign up!

This is an exciting project.  Quite often, I hear complaints that most research recruitment is for RA patients only.  Now patients with PsA, AS, and AxSpA will get their chance.  Join us now
Learn more here:  
Take a chance and let your voice be heard, from the comfort of your sofa!


****I came in 4th place out of over 200 blogs.  Thank you to everyone who voted!

As my joint turns: My Autoimmune Soap Opera has been nominated for HealthLine’s Best in Health Blog.  Yay!

If you can, please help me out and vote.  Click on the link.  Currently I am at 22 or so.  You can type in the search field “autoimmune” and my blog will pop up.  Then vote via Facebook or Twitter (or both!!)

Thanks for your help!

Lolabellaquin/ Kelly

Healthline Best Blog Nominee