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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.

 

Reflections on ACR 2018

January 1, 2019 in Advocacy, Encouragement, Events, Patient Input

by Shannon Young

On the final day of this year's American College of Rheumatology (ACR( Annual Meeting, while I was manning our booth, a physician from another country stopped right in front of our table and said, “YES! That is so correct! This is the problem people don’t understand.” He was referring to our background which was of one of our billboards with arthritis crossed out, disease written above it and the tagline that arthritis is just one symptom. We talked for quite a while about the many facets of this disease that are misunderstood such as the increased risk of heart and lung issues and the need for better understanding that this is a multifaceted DISEASE.

The opportunity to attend ACR in October 2018 was an incredible blessing. I went understanding that my primary role was to represent patients and to be an advocate for us in the midst of physicians and pharmaceutical companies. Not only was I able to do that, but it was like being in a different world for a few days, a world that spoke my language.

Since my diagnosis nearly 7 year ago, I have relished the moments where I have felt understood. There have been few. So often someone will ask me what medications I am on to treat my disease and if I give the real answer, I can tell it’s too much. Why wouldn’t it be? It is so much to understand - DMARDS, biologics, biosimilars, and all with various points of entry on the immune system. All of that was different at ACR. While I was there to educate on the patient experience, I was also a learner and soaked up everything I could about our disease. Here are my takeaways as a newbie to this yearly conference.

1. We all have so much to learn. Not only do physicians and pharma need to learn about US and our experience, but we need to continue to educate ourselves about this disease process. As a patient, I need to keep reading, researching and then advocating. While we can’t all decipher numerous research articles, we can utilize the resources available such as Kelly Young’s book that does a phenomenal job of combining research with patient experience. I’ve considered myself to be an educated patient, yet after reading Kelly’s book and attending ACR I have been able to advocate for further testing for myself in regard to my heart and lung functioning. After learning what I did, I could no longer ignore or deny the symptoms I was having.

2. Pharma is not the enemy. In our cynical world it is easy to fall into the, “Pharma doesn’t want the cure for _ because then they would lose money.” I saw the passion in the folks we talked to. They DO want to make our lives better. Bringing a single drug to market carries significant costs, and most don’t make it there. We must continue to work with them so that the patient experience is always at the forefront. That is something RPF is extremely committed to doing.

3. We must ramp up our collective efforts to advocate for patients with Rheumatoid Disease. RPF is the only organization dedicated solely to Rheumatoid Disease and our board recognizes how important it is that we continue to put a focus on our particular experience. Arthritis is just one symptom for us and until the world understands that, our mortality rates will be too high and we will continue to be misunderstood and undertreated for the many facets of this disease.

4. There is HOPE. I will admit that going in, I was feeling a bit defeated individually. I’m one of the patients who has been on multiple biologics (8) and other medications, with little or short lived response. It’s hard to have hope, when the list of possibilities is dwindling. Seeing RPF connect with the many pharmaceutical companies’ patient advocates and knowing they are vested in how they can help beyond providing medications was heartening. My most hopeful moment is what you see in this photo. Every day there was a poster session where the researchers would present their results and be available for about an hour to answer questions. After the big rush on the last day, I went up to this upper area where you could see the whole gallery. Just look at all the research being done! These displays are double sided and were changed out for 4 days! That is a lot of research that has the potential to change our lives.

5.We must continue to bring in our healthy counterparts. The Rheumatoid Patient Foundation now has several board members who do not have the disease, but are vested because their loved ones do. Their support is instrumental in this fight. Often the people that love us feel helpless to change anything for us. Letting them know they can get involved in advocating with us takes some of the burden off us and allows us to draw from their strength. We must be open to this help.

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!