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Carmen’s Story

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 […]

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.

 

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Reflections on ACR 2018

by Shannon Young

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.

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Jodi’s First ACR

As a brand new member of the Rheumatoid Patient Foundation Board, I was thrilled to be able to attend the 2018 American College of Rheumatology (ACR) Annual Meeting in Chicago this fall! The four-day event, highlighted rheumatology developments and drew medical professionals and researchers from around the world. It was an eye-opening experience! The amount […]

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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 visitour story page. Tell us a little about yourself and your family — where you’re from, what you do, […]

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