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Judy’s Story

March 1, 2019 in Encouragement, 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'm a retired Foundation Phase teacher from Jeffreys Bay South Africa. I live with my husband and our 2 sons on our family farm. I'm an avid walker and swimmer and have many creative hobbies, all involving these precious hands of mine.

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Savannah’s Story

February 21, 2019 in Encouragement, 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 was born and raised here in the beautiful state of Texas! My interests include designing clothes and putting together funky outfits. I also love playing tennis with my friends to keep myself active and fun.

When were you diagnosed with RA/Rheumatoid Disease?

I was diagnosed at age 8.

What was your first symptom?

I woke up one morning paralyzed from my hips down. I could not move one bone whatsoever and had to be rushed to the nearest doctor.

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

Although my arthritis is challenging, it has created some beautiful achievements to me. I serve as a role model for girls in my school who also deal with autoimmune diseases. We meet with one another to uplift each up other that are battling a similar battle, it is a beautiful thing. The most challenging part of having my Rheumatoid Arthritis is getting bullied in school. This past December I was teased in front of class about how my JRA is fake and my pain is all for attention. The girls who said this in front of the class will never have to walk a day in my shoes or know what it feels like to sit hooked up to a machine receiving medicine. Although the bullying part absolutely hurt me into pieces, I had to remind myself that I am loved by my family and friends and people have a mean heart for no reason.

What has been your experience with treatments for rheumatoid disease?

My first medicine was Methotrexate, which only helped for a couple of years. My second and current treatment I have been on for 2 years now is Orencia infusions. This medicine has drastically improved my arthritis, it almost feels as if I am close to remission!

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

That I am beautiful. No matter how many times this disease knocks my off my feet, I am a strong beautiful woman and I will not let it rule me!

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

Reaching out to my peers when I feel discouraged. I've learned its okay to ask for help or if you need encourgement to get you through the pain.

What have you learned through living with rheumatoid disease?

That you need to take care of your body. What you put into it is what fuels you, make sure you are taking care of yourself and pain or else no one will.

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

Better days are coming. I know it is a scary thing to get diagnosed with but I promise that you are loved and you are so strong, you WILL get through this no matter how severe the pain is.

Natasha’s Story

February 10, 2019 in Advocacy, Patient Input, Stories

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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. Read the rest of this entry →

RD Profile: Miranda

February 3, 2019 in Advocacy, 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.

My name is Miranda Johnson and I am from a small town in NC. I live with my two children ages 11 and 18 as well as my husband of approximately 19 years who are my support system. 

Although my RA symptoms started when I was around 8-9 years old, I was not properly diagnosed until I was 18 with a seropositive reading. With my early symptoms as a child, doctors would look at me as though I were a monkey in a cage only giving me antibiotics. Once I became older and symptoms progressed I did see physicians taking my disease more seriously. My RA is classified as severe/chronic effecting all joints and some organs. 

The best advice that I could give anyone who is newly diagnosed is not to be scared of the medications available today. RA is a progressive disease that needs a progressive approach. Much joint damage cannot be corrected so the quicker you get yourself into remission , the better. Stay active and positive the best you can. The world does not stop for ourselves having a bad day but if you are then cry, wipe your tears and remember that you are still going and that’s what counts. Any chance you get to advocate for our disease, take it! We need a cure! If a cure isn’t found in your lifetime then advocate that one is found for your children’s lifetime!

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.

 

Eddie’s Story & Volunteer Experience

October 28, 2018 in Advocacy, Events, Stories

We at the Rheumatoid Patient Foundation believe that our personal stories are powerful tools of education and inspiration. We have asked several of our volunteers to share a part of their journey and volunteer experience with us after joining us at the American College of Rheumatology Annual Meeting. If you are interested in sharing part of your story, please click here.

Eddie Franklin - Volunteer Experience at ACR 2018

I had a fantastic time at the ACR. I did not realize that there were so many people who have Rheumatoid Disease, along with so many Rheumatologists and prescription drugs. I thought this was going to be somewhat local, maybe in a tri-state area. To see all of the rheumatologists from all over the world was amazing to me. It was very educational to learn that Rheumatoid is a Disease and not just Arthritis. Besides finding out that RD affects joints, but also tendons, ligaments, bones and muscles. I did not really understand this.

It was fun talking with the doctors, drug companies, and anyone else related to Rheumatoid Disease. Anita (my wife) and I enjoyed explaining what the Rheumatoid Patient Foundation was, that I have RD, and getting them to sign up for a free copy of [RPF Founder] Kelly’s book (Rheumatoid Arthritis Unmasked) and/or a poster for their offices. It was a great learning experience.

 

 

Eddie's Story:

My name is Eddie Franklin. I am blessed to be married to Anita for a little over 12 years, I have two step children, Jonathan and Dana, along with two grandboys, Gary and Clark. I live in a small farming community in Charlotte, MI. My wife and I enjoy motorcycles, the S.O.A.R. motorcycle ministry which we are proud to be members of, along with serving the Lord whenever possible. We love beach vacations when we can get away.

I was officially diagnosed with Rheumatoid Disease about four years ago, maybe a little longer, but I need to back my story up just a little. I was involved in a serious car accident back in February, 1986. I have been suffering with a Traumatic Brain Injury (TBI), along with Seizures. I have developed different medical problems ever since. About eleven years ago, while living in Livonia, MI, my joints started swelling and really hurting. I was in a tremendous amount of pain. My fingers and ankles really started to bother me. I was taking between 6 to 8 Aleve a day. I needed something for the pain. I thought it had something to do with my car accident.

My wife talked with her daughter Dana, my stepdaughter, who has RD. She recommended her rheumatologist when she lived in the area. I went and he did the typical tests and said I did not have Rheumatoid Arthritis. He told me not to take too many more of the Aleve a day because it could eventually hurt my stomach. All I know is that there was something wrong.

As days went by, I was feeling worse. My hands, feet, ankles, knees, and hips were all starting to hurt. Again, I just thought this was from my car accident. It was difficult for me because I was having problems holding up my motorcycle. I dropped it a few times. My ankles just wouldn’t let me hold it up. I was starting to think I was going to have to give up on one of my true passions, riding. We have since moved to Charlotte, MI. The problems in my joints were hurting me really badly. Some of my fingers are bent and my joints hurt. Sometimes my hands even go numb. Again, Anita talked with Dana about my problem. She said that I have RA. That it can go undiagnosed in the blood work. She recommended her doctor in Grand Rapids. He agreed with Dana, that I had RA.

He started giving me methotrexate and prednisone. After 3–4 weeks, I could not believe the difference. I had movement in my joints, something I haven't been able to do without pain. Do I still have pain, yes, but not near as much. About 4 months later, the methotrexate was not working like it did. My doctor changed my medication to Humira. This time it worked for over 7 to 8 months, maybe a little longer. When it slowed down working, he changed it to Enbrel. Again, maybe 7 to 8 months and I still started to have pain. Now I am on Orencia. I still suffer with pain, but it seems to be working.

I am grateful to the Rheumatoid Patient Foundation. I just did not realize the meaning of Rheumatoid Disease. I learned that arthritis is just one part of the disease. After working at the ACR in Chicago, I feel I am starting to be better educated on RD and now if I have any questions or want to share my experiences, I can.

I am thankful to my wife Anita and stepdaughter Dana. Both are very intelligent women who do their homework. They do not take no for an answer. Do I still ride my motorcycle and serve in the S.O.A.R. motorcycle ministry? Yes I do. I did have to switch from two wheels to three. But, even though I am still in some pain, I am able to serve the Lord.

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/