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Carmen’s Story

January 19, 2019 in Interviews, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visit our story page.

Tell us a little about yourself and your family -- where you're from, what you do, what your interests are, etc.

I am a mother of two grown children and an angel who I lost to SIDS when he was 2 months old. I am a wife to a very loving husband and veteran, a Nana to four beautiful grandbabies, and a cat mama to two beautiful crazy kitties. I am from a small town in Wisconsin, Beloit, and I live just north of there in Janesville, WI. My interests include Family (always and forever), animals, reading, sports (watching not playing anymore).

When were you diagnosed with RA/Rheumatoid Disease?

I was diagnosed in November 2018, but I believe I have been dealing with this for several years now but passed it off as just getting old.

What was your first symptom?

Being hospitalized with inflammation of my lungs, then again with my colon.

What is the biggest way rheumatoid disease has affected your life?

I have lost my job and I can not do the things I used to do anymore.

What has been your experience with treatments for rheumatoid disease?

Just started on a treatment of Methotrexate, so it's all new to me.

What do you want the public to know about rheumatoid disease?

Rheumatoid Disease is not just about the joints, it affects your whole body and organs. It is very painful and debilitating, has an affect on your mental health as well.

How have you worked to overcome challenges presented by rheumatoid disease?

I haven't, still working on it. Right now I am trying not to lose everything I have worked so hard for which is really hard when you have to chose to either pay bills or eat. I rarely eat because there just isn't enough in the budget.

What have you learned through living with rheumatoid disease?

I am not superwoman and I need to listen to my body.

What encouragement or advice would you give to someone who is newly diagnosed?

Don't give up and seek all the help you can get.


Shortly after her story was published here, Carmen decided to write a letter to her local representatives in government to inform them about the realities of living with rheumatoid disease. Her letter is pasted below. For more examples of advocacy letters and advice on how to get the attention of your local representatives, please visit our advocacy page.

 

To whom it may concern, Tuesday 02/05/2019

Greetings & Salutations

My name is Carmen, I am 51 years old and recently diagnosed with a debilitating autoimmune disease called Rheumatoid Disease/Rheumatoid Arthritis (RA) & Sjogren's Syndrome. Most people think that RA is just arthritis however arthritis is just one symptom. This relentless monster has affected my lungs, gastrointestinal track, eyes, mouth, muscles, veins and of course my joints. This is a Systemic Autoimmune Rheumatic Disease, this is an umbrella that covers the two I have mentioned and several more.

This disease not only destroys your body & mind but also destroys your life. I was let go from my job at Grainger, a job I loved and doing well at. As a result of losing my job I am now behind on rent, car payment, bills and everything. I have reached out to work things out with my landlord (Integrity Investments Inc. out of Brookfield, WI) because I can get help with at least one month's rent and was approved for Section 8. Waiting on Section 8 to send me my orientation appointment date and I will get a voucher. I also planned on getting caught up on rent with my taxes. They turned down the help I was going to get and told me that I have to talk with their lawyers who I haven't even heard from yet.

I need my car, I love my car, it is my dream car and I'm close to losing it. I reached out to Nissan to see if there is anyway they could do to help me but I haven't heard anything back from them. I have had to allow bank accounts to close because of insufficient funds because I keep getting screwed by unemployment. I just can't catch a break!

Isn't it bad enough that I take oral chemo every week, can't make it through a store, do laundry, or even take a shower without becoming sick, running a fever and going through excruciating pain. I am so close to giving up because honestly is it really worth it when you are going to lose everything you worked so hard to accomplish to an incurable disease?

This is my final cry for help as I have pleaded for help several times before and to be honest I truly think no one cares. Is there absolutely no humanity left in this world?

P.S Wednesday, 02/06/2019

Went to ER today, running a fever, dizzy, trouble breathing, etc...I get home and there is two court papers tapped to my door from my landlord's lawyer. For the whole world to see, no privacy at all. Of course it's to late to call by the time I get in so I will be calling in the morning to see if there is any hope to work anything out with them.

 

Patti’s Story

July 22, 2018 in Interviews, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visitour story page.

Tell us a little about yourself and your family -- where you're from, what you do, what your interests are, etc.

In my 58 years, life started in Asheville, NC with two simple mountain-raised parents with 4 children and no real clue what to do with them, other than to love them. The move to Houston, Texas, in first grade, was my first experience with culture shock. Freshman in high school was the parent-chosen time for the next big move, providing better experiences and exposure to a different way of life, with the family move (minus father) to San Diego, CA. For the next 27 years, I lived a happy, independent life after divorcing when my boys were 4 and 8. I didn't have time to deal the fibromyalgia and chronic fatigue at that point. I chose at age 44 to sell my business and home since my boys had grown up and moved out. The whole family, one at a time moved to the quiet, pristine town of of Bend, Oregon. Ahh, no traffic (2004) more affordable, no sales tax, conscientious people. I tackled the large home and decided the downstairs quarters, with its own entrance, would make a perfect two bedroom rental with mini-kitchen. I like decorating. With a friend's help, we got the five bedroom, three bath home beautifully put-together and furnished in a week! Complete overload for my fragile system! Then I "crashed" and had to return to San Diego to live with my sister for 2 months...I have not been able to physically work since about 2004. My interest are mostly reading and taking in the sights, spending long lunches or dinners with groups of friends, where I currently live.

When were you diagnosed with RA/Rheumatoid Disease?

Although I was not officially diagnosed with RA until 2006, the beginning of it was the stress of 'the big move' mentioned above. It was a combination of fibromyalgia, which was diagnosed in the late 90's, and RA. Somehow, I got it under control and got off Enbrel by the following year. Not much advice was offered at the doctor's office I had to drive for two and a half hours to get to. "Take your injections...here is a pamphlet." STRESS in 2010 brought about a new body part being affected the RD...I call it Rheumatoid Disease. I woke up, put my feet on the soft floor and it felt like I had hiked through lava rock all night barefoot. It took 2 frustrating years and several doctors to even get the diagnosis correct. Being hyper-sensitive, I had to take brand name medication. Methotrextrate did not work for me. Through another doctor, I was put on Plaquenil, which seemed to help. It was not until years later, that two doctors told me I needed to take Plaquenil in conjunction with another medication. Steroids seem to be the main suggestion, which I try to avoid.

What was your first symptom?

in 2006 and 2012, my hand would curl up in a hook-like position. I would physically manipulate it until the muscles released. 2010 was when the first system presented in feet. Hard knots on my palms and larger thumb joint were some initial indicators in 2006. 2010...the pain in feet. Swollen knees, arthritis in neck. Pain and swelling jumps from one body part to another.

What is the biggest way rheumatoid disease has affected your life?

The fact that I can only commit to plans on the day of. If I didn't eat a perfect diet the day before and eliminated every single stressor from my life, "ability to do and go" are unpredictable. People's attitude in regards to invisible pain is not empathetic, unless they have a family member or friend that has explained what the new life version will and will not allow. No longer able, most times, to do a lot of stairs. No way, a long plane flight can be tolerated. Chronic pain leads to depression, of course, you have lost your previous life!

What has been your experience with treatments for rheumatoid disease?

My treatments in the U.S. have been a terrible experience. One that many will discover on their own. Doctors say "we'll try this" and prescribe a strong medication in the eight minutes of time allowed to discuss a serious situation. Too many times, when bed-ridden, I have resorted to steroidal cortisone, orally and injections. The oral method makes me feel ampy, like I drank five pots of coffee. Steroidal options only bring the symptoms back ten-fold at a later date and it has caused my skin to thin. Seeing one doctor in the states, leads to a referral to another doctor, usually a specialist, which takes months to get referral approved, then months to wait for for an appointment. The U.S. medical system is severely broken. I have tried chiropractors, alphabiotic neck to spine adjustments, acupuncture, accupressure, x-rays, ultrasounds, MRI, kenalog injections in knees every four months, reflexology, ozone therapy, Bowen sessions, diet change, apple cider vinegar, turmeric, and more. Yoga helped, but I am not physically able to do it currently. MY BEST CHOICE WAS MOVING TO MEXICO! That was almost 2 years ago. Processed food is not really an option here. Slower pace of life...more relaxed attitude has helped greatly. Medical system in Mexico offers a more relaxed, holistic approach. Doctors never rush you out of the office. Affordable too...it costs the equivalent of $30 USD to see any specialist you would like to spend an hour or more with. The doctors here in Mexico diagnosed liver inflammation from medical toxicity, from Amytriptyline (the anti-depressant that I was given in the U.S. as an alternative to the paxil disaster). I discontinued it February 2018 and had trouble getting off it, too. Two eight hour hospital stays requiring nausea, migraine and de-hydaration IVs. It was NOT the Plaquenil causing the toxicty, which was originally suspected. I was told how to properly titrate down from paxil in 2016, so I slowly weaned off, twice as much as directed. Still lead to withdrawal systems for months, migraines, fever, could not tolerate sound, light or food smells. Doctors continued to disbelieve this was all the cause of symptoms for months! The last one finally agreed that I was hyper-sensitive. What they don't say is that if you choose to take it, you are on it for life! I stopped taking it, but, oh, the repercussions. I suggest everyone read the complaint blogs, 1000s of them. A current medication that contains Naproxen and a light muscle relaxer is my main medication. RA leads to many other issues, as I am sure people are becoming more aware of. I take ativan as my second Rx, which ensures a good nights sleep, which is crucial for people with the combination of Fibromyalgia and RA.

What do you want the public to know about rheumatoid disease?

You have no choice but to learn to eliminate stressors from your life. You do have a choice what to take and what not to take. Do not blindly accept what doctors tell you to do. Do your homework, figure it out on your own.

How have you worked to overcome challenges presented by rheumatoid disease?

Determination and the attitude that I will persevere. I avoid situations that involve drama and simply remove myself. I choose to spend a great portion of time alone reading, watering plants and watching the hummingbirds.

What have you learned through living with rheumatoid disease?

I have learned how nasty and disabling it can be. I have learned how many people have it. I have learned there are a million different opinions on it and the treatment. Old patterns have to be discarded. Change is forced upon you, whether you choose to accept and adapt is strictly up to the individual.

What encouragement or advice would you give to someone who is newly diagnosed?

Read, research, listen to your own intuition. Do not blindly do what a friend, relative or doctor suggests. Listen to your body. Avoid stressful situations. Hope for better treatment/cure in our lifetime. I am leaning toward TNF injections, which are considered very expensive here in Mexico.
Consider your options and alternative treatments.

What else would you like to share?

All the writing writing took all the energy I have until I re-charge. Take it slow, you type As, especially.

RD Profile: David St. Martin

February 20, 2018 in Advocacy, Interviews, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visitour story page.

First, tell us a little bit about yourself.

My name is David St. Martin and I am from Shrewsbury, Massachusetts. When I’m not working full-time, I enjoy spending time with my daughter and participating in outdoor activities such as kayaking, sailing, scuba diving, indoor rock climbing and more. Throughout childhood, I was in and out of hospitals and in and out having to use a wheelchair, graduating high school as a wheelchair user.

When were you diagnosed with RA/Rheumatoid Disease?

I was diagnosed with systemic, polyarticular Juvenile Rheumatoid Arthritis at age 2, more than 4 decades ago.

What was your first symptom?

The onset of my disease appeared as rash on my trunk, along with high fevers and joint pain, primarily in my hands and knees. Severe joint deformities occurred so rapidly that I became wheelchair bound.

What is the biggest way rheumatoid disease has affected your life?

I consider myself lucky. Lucky that I was so young when diagnosed. Since I have experienced pain and deformities throughout my life, I am unable to fully imagine my life without the disease. On a daily basis, my mobility is compromised, my activity can be limited, and daily pain fluctuates. A person with Rheumatoid Disease quickly becomes acutely aware of their body and how weather, activity, diet, sleep and other variables may affect it – sometimes on an hour-by-hour basis.

What has been your experience with treatments for rheumatoid disease?

Back in the late 60s, early 70s, my treatment consisted of gold injections, aspirin and experimental anti-inflammatory medications in conjunction with rigorous physical therapy consisting of stretches, heat/cold therapy and paraffin baths. In my teens, prednisone was introduced to mitigate pericarditis and surgeries began in my 20s. Surgeries consisted of but, not limited to, total knee and total hip replacements. Today, my disease is sufficiently controlled by prescription pain medication and an over the counter anti-inflammatory.

What do you want the public to know about rheumatoid disease?

Rheumatoid Arthritis is not a bone or joint disease. It is not your grandparent’s deformed hands or the sports person’s sore knees. RA (or Rheumatoid Disease) is a chronic, systemic autoimmune disease in which the body’s immune system attacks organs and joints causing damage that may result in severe pain, deformity, organ failure and sometimes death. Remission is rare and currently there is no cure. Millions of adults and tens of thousands of children, including infants in the United States have a form of rheumatoid arthritis (RA).

Personally, Rheumatoid Disease has affected most of my joints from my neck to my toes and has also involved my heart and eyesight.

How have you worked to overcome challenges presented by rheumatoid disease?

I consistently try to not let my disease define me. I do my best to live like someone who just happens to have RD. Admittedly not well, I try to eat healthy, sleep well and follow my numerous physician’s recommendations. I also push myself to experience life as best I can. Several years ago, I decided to change my “disability” into “ability” and participate in outdoor activities. Working with several organizations that assist the disabled, I have had the opportunity to sail, kayak, rock climb, water ski and even became certified in Scuba Diving.

What encouragement or advice would you give to someone who is newly diagnosed?

Do your best to not dwell on the past. Try not to focus on what you have lost, instead focus on what you are still able to do. Try to accept your new “normal”. Do not be afraid to ask for help. Talk with a counselor, family, clergy and friends. Every day, try something new. Whether it’s adventurous as kayaking or as simple as getting out of bed. Rheumatoid Disease isn’t the end but, it is a new beginning.

To learn more about David and how's he's turning his "disability" into "ability", visit his website: http://davidstmartin.com/

RD Profile: Minister Darnel McMillan

February 19, 2018 in Advocacy, Interviews, Patient Input

RPF sees the importance and value of sharing our own unique stories with rheumatoid disease. We love highlighting personal profiles on our blog to show the real people who are the face of this disease. If you're interested in sharing part of your RD journey with us, please contact us.

First, tell us a little bit about yourself (name, where you live, interests, hobbies, etc.)

My name is Darnel McMillan. I was born in the Bronx, and am living in the Bronx but have lived in 4 of the 5 boroughs for about 10 years or more each. My passion is the study of religions and the Christian faith. My children are either college grads, in college or on their way to college this year (2018).

When were you diagnosed with RA/Rheumatoid Disease?

I believe, if memory serves me correct, 2014.

What was your first symptom?

Pain in my right ankle, right knee, right elbow, right wrist and both shoulders.

What is the biggest way rheumatoid disease has affected your life?

It kept me from financial gain and the lifestyle I enjoyed.

What has been your experience with treatments for rheumatoid disease??

As long as I take the medications, my pain and/or discomforts are minimized to a certain degree. As time goes by, I notice my abilities continue to diminish. Keep in mind that I have RA throughout my body, not just in a particular area or areas.

What do you want the public to know about rheumatoid disease?

RA is extremely painful, incurable and should be place in the same category as cancer and all other high profile diseases for funding. Let's find a cure.

How have you worked to overcome challenges presented by rheumatoid disease?

Exercise, if possible, and wake up each day believing they have found a cure.

What encouragement or advice would you give to someone who is newly diagnosed?

Take your medication as prescribed; ask your doctor questions; voice your concerns; and live each and every day as you would normally.

Thank you, Min. McMillan!

Skydive Fundraiser Success & Follow-Up Interview

September 17, 2017 in Events, Exciting, Fundraiser, Interviews, Patient Input

As you may recall, Rheumatoid Patient Foundation member, Anja Gilmour, set out to do a charity skydive benefitting RPF earlier this year. Through her fundraising efforts, she was able to raise over $2,600 for RPF! Way to go, Anja! The skydive took place in England in August, and you can view a video of her jump below. After the fundraiser was over, we wanted to do a follow-up interview with Anja to hear more about her experience in organizing a fundraiser, and as a way to offer some encouragement and advice for anyone else who is interested in setting up their own fundraising event. Check out Anja's skydive video and interview below!

First, tell us about your experience of doing another skydive -- but this time at 15,000 feet. Was it scary? Fun? Both?

I guess you could say a little of both. But, as I had done this last year (though at 10,000 feet), I knew what to expect so I was probably more excited. I was also really excited about not only having my instructor recording the experience via his wrist cam, but having a photographer jump out with us to take footage from another vantage point. Free falling at 125mph and having another person (the photographer) come so close to you that you could touch him was amazing! I do remember, though, that when the plane kept climbing and climbing before it was time to exit, I was thinking "okay, I think we must be at 15,000 feet already!" It's a long way up! Another special experience on that day was that there were many clouds so far below us that it definitely gave me a different and even more beautiful perspective during the free fall. The company I jump with in the UK, GoSkydive, made this experience so wonderful for me as they did last year. They are very professional, supportive of people who are jumping for a cause and are fantastic in making you feel safe, secure and confident. The same instructors and personnel were there as last year which is a sign that they must be doing something right and you can definitely see that on the faces of people who had just done a jump!

What were some of the challenges you faced in running a fundraiser?

Well, when you work full time, are having periodic problems coping with your RD, and are trying to be successful at a fundraiser, it can be challenging. I worked very hard for this fundraiser but can honestly say, I would do it again without hesitation! Though I'm average at using the computer (but primarily for my bookkeeping business), I had to learn more about social media, how to do a website, etc., and find different ways to keep people interested and engaged. Another challenge was fundraising for two different charities in two different countries, though both having the same goal for Rheumatoid Disease issues. I ran into many roadblocks trying to use the usual fundraising tools such as JustFundMe, GlobalGiving, GoFundMe, Crowdfunding, etc., as I could not get any of them to work with me in having two different entities in two countries. It was quite frustrating. So because of this, I ended up directing individuals who wanted to donate to each charity's donating page, and found that many people had a hard time navigating this via internet, which is something you don't want a potential contributor to have a problem with.

What was the most fun part about doing a fundraiser?

Getting to know you, learn more about RPF, the people of the UK organization, NRAS, and being so excited that I found both organizations to fundraise for, and to see that there are a lot of people trying to get more awareness out there about this very misunderstood disease. It was also a "buzz" for me to hear when someone wanted to contribute (or did contribute) to a cause that is so important to me. Also, if I can be selfish here, doing the actual skydive was such a thrill for me! There was a brief moment during my free fall that I thought "Wow, I'm doing this for my fundraiser and how wonderful!" I am really hooked on skydiving now, though my husband thinks I need therapy! But, as one of my friends so correctly said the other day, "no, I think skydiving IS your therapy!" I am already making plans for my next jump in 2018.

What kinds of reactions did you get from people when you told them you were going to do a skydive to bring awareness to rheumatoid disease?

The reactions were all positive. I do have to say my rheumatologist and spinal surgeon think I'm nuts (I'll have had a spinal fusion after this blog is posted!), though both approved me doing the jump. My family and friends were very excited that I was going to do this and were proud of me and let me know that doing it for a cause I cared about and that affects me greatly was truly a wonderful thing. I didn't get one negative comment and felt very fortunate for all the support. My biggest supporter was my husband, Alastair. He never complained once how much time I spent on the fundraiser and was such an emotional strength to me during times of difficulties, whether there were problems with some of the fundraising aspects that I spoke to him about, or having issues with dealing with my RD, but most importantly, supporting me in my love for skydiving.

What unique experiences and opportunities did you come across as a result of doing this fundraiser?

Oh my goodness, there were so many. First and foremost, I think that this fundraiser actually benefited me more than anything else. It got me in contact with people who also suffer from this disease and helped me feel that I was not alone in dealing with it. Though I have tremendous support from friends, family and my doctors, if you don't have RD that's been pretty aggressive and hard to manage such as mine, you really can't understand the daily challenges. As your new campaign of billboards is going up around the country, it is true what they say on them: RD is "An Invisible Disease". We who suffer from this disease may "appear" to be just fine at times when we really aren't. And, I think that many of us have learned how to "hide" our symptoms, which actually we shouldn't do. Through this fundraiser I have finally learned not to "pretend" I'm okay when someone asks, "how are you doing today?" If my day is bad, I'll now say, "I'm not doing so well...my RD is acting up terribly". And now when I say that, I don't feel guilty anymore. It's actually been liberating and nothing to be ashamed of.

What would you change in your strategy or process if you did another fundraiser in the future?

That is probably one of the hardest questions! I really don't know what I'd do differently. I tried very hard to get local media involved, UK media involved and it proved to be very unsuccessful. And this was a disappointment. Though, saying that, I currently have a local health show news person that is very interested in this story and would like to do a segment! Maybe one thing I would change would be to have more people helping me as I did this all on my own, and that was quite exhausting. But, I feel I did the job I set out to do and am pleased with the results.

What advice would you give to someone else who is interested in organizing a fundraiser?

Make sure you are doing a fundraiser for a cause you truly believe in, because people will see your passion and desire to do something good. Make sure to go into it 150% and nothing less. I think passion is the key word here. You must be passionate about fundraising for a cause. And you must do something along with the fundraising that you thoroughly enjoy to get people interested and for you to enjoy along the way, e.g., me skydiving.

Thank you, Anja, for all your hard work in bringing rheumatoid disease awareness to new heights! If YOU are interested in starting your own fundraising event, please contact us!

Addison’s Story

June 14, 2017 in Encouragement, Interviews

Addison's Juvenile Rheumatoid Arthritis Story

Anyone who lives with rheumatoid disease or who is close to someone with RD knows that it takes strength and courage to battle this illness each day. But what about when the person battling rheumatoid disease is a child? It takes a special kind of resilience for both the child and the entire family. Today, we wanted to share with you a special story about one child living with rheumatoid disease. We'd like you to meet Addison -- a seven year old who has been living with RD for over five years. Addison and her mom, Shanna, share their story below in an effort to educate others on the fact that rheumatoid disease can affect people at any age.

Interview with Shanna and Addison

Firstly, could you please tell us a little about your family and Addison?
Addison is a spunky, kind, loving 7 year old with the most beautiful strawberry blonde hair. We are a family of five which includes Addison’s 10 year old brother, Nathan and a shitzu puppy named Felix! We live in Boca Raton, Florida and some of our favorite family activities include going to the movies, beach, swimming and bowling.

addison2

At what age was Addison diagnosed with rheumatoid disease?
Addison was diagnosed with JRA (Juvenile Rheumatoid Arthritis) just before her 2nd Birthday.

What were the first symptoms that appeared?
Addison would always want to be held and I just thought she was a “needy” baby who was struggling with separation anxiety. For her second birthday we planned a family trip to California and while in the parks, she refused to walk, either wanted to be held or pushed in her stroller. A couple of weeks later while at home, Addison was playing with some toys on the floor. She was talking about her favorite doll that was located across the room and instead of getting up to go get it, I saw her crawl across the room. Since she was almost 2 and had been walking for over a year, this was very concerning to me. I brought that up at her two year old doctor’s appointment. Her pediatrician saw right away how swollen her joints were and referred us to Seattle’s Children’s Hospital (as that is where we lived at the time).

addison3What has been Addison's experience with rheumatoid disease treatments?
For three years, we had to give Addison weekly injections of methotrexate. The first couple of months we struggled by holding her down while one of us injected her, to finally administrating the shot right after she had fallen asleep. We dreaded Sunday nights and it never got easier. If she moved, your first instinct was to pull the injection out. Sometimes she would wake up in a haze and ask what we were doing, sometimes we were successful and other nights we were up to midnight because she had woken up completely and was "on to us". Her rheumatologist mentioned that we could “hide” the medicine in ice cream or smoothies. We created “Smoothie” Sundays where we would have a healthy smoothie to start off the week. We would all drink them, except Addison’s would have her medicine in it. She could taste it and she would gag with every sip. That lasted about three weeks, so we were back to injecting her again. Things were good. The medicine was controlling her JRA....until it wasn’t. I started to notice she was having trouble walking long distances. She couldn’t walk an entire grocery store and would ask to sit in the cart 99% of the time, she was tired but still wanted to do normal things 7 year olds like to do. She had asked me to join a gymnastics class and I was so excited for her. The first day was horrible as she physically could not do what the other girls were doing. Her little body just didn’t have the strength. As she stared at me with tears rolling down her face, I knew the medicine wasn’t working anymore. After talking to her doctor, we decided to try joint injections and they worked for about six months. It was such a nice break for her not to have to be on medication. At her next doctor appointment, she prescribed leflunomide and that would allow her to swallow a pill. The first day, she swallowed it like a champ! However, after a couple of weeks, we started to notice she was having stomach issues and had to go to the bathroom after every meal, which we knew was a side effect. We felt so defeated. During that time, she also came down with a horrible virus which required her to be hospitalized, causing her to miss 2 weeks of school. Her doctor took her off that medication so she could fight that viral infection and once she was healthy we decided on joint injections again and to continue leflumonide but at a lower dose.

What do you see as the hardest thing about living as a child with this disease?
We hear all the time “she doesn’t look sick” and that is frustrating. Addison is resilient, strong, has a positive outlook and amazing faith. This helps project on the outside that she is happy and enthusiastic despite the daily battle that she fights against JRA. We have heard comments from people because no one looks like they “need handicap parking”. Addison has a mobility chair and at the age of seven people have told us directly that she’s “too old for a stroller”. As a parent you advocate, but as a child it makes her feel different. That’s not fair for her to feel that other people see her as not being “normal”.

addison4

In what ways has rheumatoid disease most impacted your family?
We recently relocated from Seattle, Washington to Boca Raton, Florida because the cold winter had been awful for Addison’s joints. She barely could get through a week of school and would go to the nurses office during her recess times as she couldn’t handle the cold or keep up with her friends. While on a visit to Florida, she mentioned that she “didn’t hurt there." She had no quality of life in Seattle, so we moved our family across the country so she could feel more comfortable and she is doing wonderful.

What do you most want others to know about rheumatoid disease?
Arthritis is not just an “old” person’s disease. It doesn’t discriminate and can affect anyone.

What information, encouragement or advice do you want to share with other caregivers, especially those caring for other children with rheumatoid disease?
When Addison’s medication was controlling her arthritis, I thought, “she’s healed, she will take this medicine and it will go away." I didn’t take into consideration that this is a chronic disease and while she may feel good on some days, it will most likely be forever. Before she was diagnosed, I felt guilty that I used to get mad at her when she wanted me to hold her because it hurt to walk. She was too little to tell me how much pain she was in. We felt guilty as a family when we would get disappointed because we couldn’t do certain activities because she couldn’t keep up. I realized it was normal to have all those feelings. Children with this disease have an extreme tolerance to pain, discomfort and will adjust to their daily activities based on how they feel throughout the day. Because this is what they experience on a continuous basis, even when you live with them each and every day, you may never realize they are working through a bad day. Often it takes an extremely bad day for you to recognize it. Watch for the subtle signs, not just flareups, fatigue or limited movement. That likely comes on the most difficult of days yet everyday can be a struggle.

addison-family

Is there anything that Addison would like to tell other children living with RD?
Children with arthritis are still kids! We want to be treated normal and don't want to be teased because we can't do certain activities that are so easy for other children to do. We have feelings and want you to understand that we have pain when we play tag or play sports. We want to participate, but sometimes just (physically) can't. Just be kind and be nice and still include us.

Thank you, Addison and Shanna, for sharing your story with us!

RPF believes that sharing our own personal stories about living with rheumatoid disease is a great way to provide support for others. Knowing we are not alone in our experiences can be one of the most encouraging things.  We thank our supporters who are willing to share their stories and help others who are going through similar situations. Let's learn from one another! Click here to share your story.

Interview with Dr. Paul Sufka

January 16, 2017 in Encouragement, Interviews

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We love the opportunity to talk to and interview healthcare professionals and to highlight those we see who are doing an outstanding job in the field of rheumatology. We originally connected with Dr. Paul Sufka online through the use of Twitter, and through a "Tweet-Up" event at the 2012 American College of Rheumatology (ACR) Annual Meeting. Dr. Sufka graciously agreed to an interview with us and we are pleased to share a piece of his story with you.

Dr. Sufka is originally from Minnesota, though he spent his high school and undergraduate years in Michigan. He attended the University of Iowa for medical school and did his internal medicine residency, a chief residency and a rheumatology fellowship at the University of Minnesota. He currently resides in Minnesota with his wife, "an energetic toddler," and a shih-tzu. In his free time, he enjoys "voraciously reading and working out." Dr. Sufka currently works as a rheumatologist for HealthPartners, a large multispecialty group practice based in St. Paul, Minnesota.

Somewhere between practicing rheumatology, and balancing a family, Dr. Sufka has managed to take on several side projects. "A few of my current side projects include RheumJC, a Twitter based-rheumatology journal club, consulting for healthcare technology startups, and completing work on ArthritisProject.com, which I intend to be an online course (or possibly series of courses) for people with arthritis." Dr. Sufka hopes that the website -- including a combination of educational articles, videos and worksheets -- will be ready to launch by mid-year.

As someone so actively involved in his field, we wanted to know what originally got Dr. Sufka interested in rheumatology. "I'll be honest", he says, "I first thought I was going to be a cardiologist or critical care doctor, which I did really enjoy for short bursts during residency, but found myself much happier after doing a rheumatology rotation, where I saw the chance to form relationships with patients and have impact on their lives over longer periods of time."

A good doctor-patient relationship is something we often try to promote. To get a view from the physician's side, we asked Dr. Sufka what he thought patients could do to help foster better relationships with their doctors. His answer was two-fold:

1. "Be honest with your doctor about how you’re doing and what you’re doing. If you’re not taking a medication because of side effects, let us know, because we might have tips to minimize them or can offer something alternative to try."

2. "When patients give my nurse 1-3 questions written on a piece of paper that I can look at before entering the room, I often feel that I can think of (or look up) better answers or solutions than when I'm thinking of answers in the room. This being said, the key thing is spending a couple minutes preparing to get the most out of your appointment."

As a consultant and avid user of technology, we asked Dr. Sufka how technology has enhanced the way he practices rheumatology. "I don’t think most patients would notice during a visit how I use tech", said Dr. Sufka "I review each patient’s chart before I enter the room, and then try to only look at the computer when I need to remember something specific or when I’m entering orders. I haven’t come across any tech that I think really enhances a human-to-human interaction in clinic, and I don’t think we’ll really find a way to speed this up." I think most of us would agree that there's not much that can beat real face-to-face communication.

However, outside of the exam room, Dr. Sufka says, "I have numerous systems in place to optimize the multiple inputs that require physician time and attention, so that I actually have more time to spend with patients." In 2015, Dr. Sufka actually presented information on this topic at the American College of Rheumatology Annual Meeting. "Unfortunately," he says, "modern EHRs [Electronic Health Records] are not designed for efficiency, but I’ve figured out a number of my own workarounds." Creating efficiencies in the behind the scenes work to allow more time with patients sounds like a very positive way to integrate technology.

But what about the future of technology in rheumatology? We asked Dr. Sufka how he thought technology will revolutionize rheumatology care, and he had several ideas. Firstly, he noted that "We have a massive need for EHR interoperability. The fact that major EHR platforms don’t really communicate with each other is a major problem (and often disservice) to patient care." Secondly, he says, "OpenNotes (patients having easy, direct access to the notes in their chart) will help minimize errors and increase their understanding of their condition." And, finally, Dr. Sufka see great value in online communities, which he says may more rapidly help find better treatment options and help identify and minimize side effects from treatments. "While we certainly derive huge value from large randomized trials," he says," I often think of this quote by Tim Ferriss: 'The extremes inform the mean, not vice-versa.'

People with rheumatoid disease (PRD) know how much of a challenge it is to live with this chronic illness, especially those who are "outliers" and whose disease pattern doesn't follow the mean. The flip side to that is the challenged posed to healthcare professionals tasked with treating PRD. When we asked Dr. Sufka what he thought was the greatest challenge facing rheumatologists today, he responded with an answer that is also one of the greatest challenges for patients: lack of availability. "Patients already have a difficult time establishing care with a rheumatologist," he says, "often waiting several months for an initial visit, and then often have a difficult time being scheduled for follow up." Dr. Sufka points to an abstract presented at this year's ACR Annual Meeting in Washington D.C. titled 2015 ACR/ARHP Workforce Study in the United States: Adult Rheumatologist Supply and Demand Projections for 2015-2030. "The study shows that in 2015 there are the equivalent of 4,997 full time rheumatologists in the U.S, which will decrease to 4,470 in 2020; 3,645 in 2025; and 3,455 in 2030." Dr. Sufka's response to this data? "Yikes!" Yikes is right. Unless something turns around, availability will become an increasingly larger challenge down the road.

Living with rheumatoid disease can be scary -- especially for those newly diagnosed. We asked Dr. Sufka what his best piece of advice would be for somebody who was just recently diagnosed with RD. His recommendation was to "start by becoming educated about your condition: really try to understand the risks of rheumatoid disease and the treatment options, along with potential side effects of each of these. You’ll learn that there are an ever increasing number of options to treat your condition, so if initial treatments are not working or if you have side effects, we typically have a list of alternatives to try." He also says that "when you’re educated about your condition and options, you can have a much better discussion with your doctor and will typically do much better in the long run. This also allows you to explain what you’re going through to friends and family, who often won’t have any point of reference to understand what you’re going through."

We agree that education is crucial and encourage anyone with rheumatoid disease to check out our resources section for links to additional information -- and we look forward to seeing the materials that Dr. Sufka is putting together through ArthritisProject.com. Despite the many challenges we face, if PRD do their part to educate themselves and share honestly with their physicians, and if physicians do their part to maximize and make the most of the time they do have with patients, we can see improvements in patient care and outcomes.

Find Dr. Sufka on the web at http://paulsufka.com/ and on Twitter @psufka.

Interview with Dr. Iain McInnes, Glasgow, Scotland

December 22, 2016 in Encouragement, Interviews

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We had the privilege of meeting Dr. McInnes at the 2016 American College of Rheumatology Annual Meeting in Washington D.C., after one of his speaking sessions. We love the opportunity to highlight rheumatologists and healthcare professionals who demonstrate excellence in science and patient care, and Dr. McInnes was kind enough to agree to an interview.

Dr. McInnes is Professor of Experimental Medicine and Rheumatology, and Director of Institute (Immunology) at the University of Glasgow. He lives with his wife, two daughters, and "an irrepressible black Labrador just outside Glasgow, in the beautiful west coast of Scotland." He speaks of Glasgow as a "reborn city built on a rich heritage of heavy industry and world trade, but more recently upon academia, health care and culture. It is a vibrant and exciting place to be!" As far as pastimes go, he says, "We are close to the mountains, upon which we enjoy walking, and some of the best golf courses in the world upon which I play rather poorly. In those very occasional quiet moments, my solace is in music of many kinds, best enjoyed with family."

Drawn to the field of rheumatology by "the challenge of looking after chronic disease," Dr. McInnes began his career when there were few targeted treatments available for rheumatoid disease and a lot of unmet clinical needs. "Rheumatology from the perspective of the clinician," he says, "requires a rare combination of communication, empathy and commitment to the long term," which he found enticing, though far from easy. "I learned from wonderful mentors who demanded thoughtful, meticulous and considerate care of people with rheumatic diseases – I have never forgotten those remarkable lessons. As time has passed I am now learning most often from the people with rheumatic diseases whom I treat – they are inspiring and constant reminders of how much more we must do in the field. I care even more now than I did when I set out in the discipline." Of his patients, he says, "They humble me with their courage and continue to teach me about the disease to inform my research."

Dr. McInnes was also training as an immunologist -- someone who studies the body's own defense system -- and, he says, "It was becoming clear at that time that the immune system might play a significant role in the causes and perpetuation of many rheumatic diseases. So it has transpired, and as such in the last decade I have been able to work with superb scientists investigating the causes and consequences of rheumatoid and psoriatic arthritis. Researching the causes of rheumatic diseases is like being part of a great novel – every page that turns brings new possibilities, but often with twists and unexpected turns. Being an academic physician engaged in both clinical care and research is a privileged position indeed."

Seeing that he takes a very patient-centric approach to his work, we asked Dr. McInnes what he thought could help foster better relationships between people with rheumatoid disease (PRD) and their doctors. He offers that "we should accept that we all have different personalities and that relationships that people form with their doctors may be quite different, but still good for that individual! Speaking from my point of view as a rheumatologist – I always encourage people to tell me how they really feel rather than what they think I want to hear – good doctors should respond by seeking solutions for what really ails you. Sometimes we need to find a range of solutions but can only really appreciate this if we understand the full extent of the problems you are facing as a result of the disease."

There are a myriad of challenges facing rheumatologists today. One of the largest challenges according to Dr. McInnes, and I think we'd all agree, is that a cure to this disease continues to elude us. "I would like to believe that we will one day be able to cure some of the rheumatic diseases," says Dr. McInnes. "The current combination of amazing medical research technologies together with emerging information and digital capabilities makes this ever more possible. But still some time in the future I fear…"

One of the challenges often faced by PRD is the assumption that "rheumatoid arthritis" is simply a form of arthritis and that its effects are limited to achy joints. While acknowledging the term as descriptive of the most obvious manifestation of the disease, Dr. McInnes also says that "the phrase hides the wider implications of the disease given the higher rates of heart disease, strokes, depression and osteoporosis that we now recognize as a part of the clinical spectrum." The priority, he says, "is to constantly educate our colleagues across the health disciplines about the broad challenges posed by the disease."

Despite the challenges, Dr. McInnes sees a lot of hope for the future of fighting rheumatoid disease. "Perhaps most exciting is that we now have remarkable technologies (both laboratory and imaging) that will allow us to explore the very origins of the disease, even before it is clinically obvious to doctors or even patients. This together with the new discipline of 'systems medicine', which brings information and computational technology together with conventional biology, will allow us eventually to decipher which pathways are driving disease in individual people. This in turn may allow us to select the best medicine for a given individual person at the 'right' or 'best' time. If we could find 'at risk' people, before they even develop arthritis, we could think of preventing disease. Ultimately this will lead to designer drugs and diagnostic tests – so called personalized medicine. This is some way off, but if realized could change completely the way we think about immune diseases."

If rheumatology research is a novel, we hope that more characters along the likes of Dr. McInnes are added to the story, that as the pages continue to turn and we work together, we might come to a happy ending in this fight against rheumatoid disease.