What was the beginning of your rheumatoid arthritis journey like?
I was hit quickly and it was very intense. It was the end of February 2015. It started in my right knee, which was not abnormal for me since I was a runner. I thought I had torn another meniscus. After an MRI and having my knee drained , it traveled to all of my large joints. Within three weeks I was crippled with both knees , both shoulders and both hips! I could not lift my arms to even brush my hair. I was referred to a rheumatologist and was placed on Methotrexate while they tried to make a diagnosis.
When were you diagnosed, and what was your journey to getting a diagnosis like?
After seeing the first rheumatologist who treated me like I was overreacting, I had put paperwork in to be accepted at John’s Hopkins in Baltimore. I was accepted into Hopkins but into infectious diseases due to my bloodwork showing latent TB, which the first rheumatologist did not treat . I was then treated for latent TB with Isoniazid for 9 months while still on steroids and methotrexate. This landed me getting bloodwork monthly to check my liver. It was not until October when I was referred to Hopkins rheumatology department where she told me I DID in fact have RA as I tested positive for Anti -Ccp protein and RA factor. I was still in intense pain
What did it feel like to finally have a name for what you had been experiencing?
Even though I was in pain I felt relief to have a diagnosis and a plan. We continued the methotrexate and tapered the steroids as the methotrexate started to make progress. It took over a year to get any relief but still in pain but not as bad. I am now on my third rheumatologist who is an amazing doctor. The methotrexate started to fail so we started biologics which failed at first and I think I have found one that may work as long as insurance continues to cover the drug at 6000 a month.
Do you have any idea what may have contributed to or triggered the onset of your rheumatoid arthritis?
I had gone to Puerto Rico in January of that year and having had a TB test at work the year before that was negative, my suspicion is I was exposed and my body fought it but I think it triggered my RA. My dad passed away from complications of RA at 62
Do you experience rheumatoid arthritis alongside any other health conditions? If so, how do these experiences affect one another?
I also have a hypothyroid which my father had too. I experience dry eyes from RA.
How does rheumatoid arthritis show up in your body and daily life? What symptoms do you experience?
Prior to my illness, I was hitting the gym 5 days a week and weights and cardio. 15 years later I keep trying to get back but I experience a lot of fatigue and pain in my hands now, although I think the biologic may be starting to work ( 3 months in )
How would you describe the pain, stiffness, swelling, or other physical sensations you experience with rheumatoid arthritis?
In the beginning and with flares I can only describe the pain as if something is stabbing your joints as well as crushing them with a hammer. Prednisone can reset this but it takes at least 6 hours to begin to work. It’s when the prednisone would not help is when i realized the methotrexate was beginning to fail.
How has rheumatoid arthritis affected your mobility or ability to use your hands, joints, or other parts of your body?
Yes , I have had several steroid injections in my hands to continue to work as a dental hygienist. I need my health insurance so I have no other options right now. When my body hurts I have to stop , evaluate and if the pain is too bad I go on a taper of steroids. I explain it like being a quarterback that keeps getting sacked anytime I try to get back to the gym or push myself on my good days.
Has rheumatoid arthritis caused any visible changes to your body? If so, what has that been like for you?
I have not had too many deformities just a little in my right foot but the medication and injections have helped I believe. I have lost a lot of hair which this is emotionally upsetting. I handle it
What is fatigue like for you, and how does it affect your daily life?
Oh the fatigue!!!! I am fortunate to have only had horrible fatigue this past year but let me tell you . I wake up feeling like I have run a marathon ( which I have in the past) . The new biologic just started to relieve that a bit and I hope it continues to get better. The fatigue is debilitating but I just fight through it. Go to work and go home and lay down. I don’t make plans often anymore unless it is with people who know that I may not be able when the time comes.
What are your mornings like with rheumatoid arthritis?
Tiring. I wake up, sit on the side of the bed and pray for the energy to get through the day. Lately the meds have kept the pain manageable
How has rheumatoid arthritis affected your sleep and ability to rest?
In the beginning , three hours sleep was average but now it’s about 6 but by that time my body starts to get “ pissed” I’m not moving ! Motion is lotion
What is a rheumatoid arthritis flare like for you?
Debilitating… I’ll get a twinge and within an hours I’m cringing in severe pain with a heating pad, steroids and acetaminophen along with ibuprofen. I lay still until the steroids kick in which might take over six hours. It is exhausting
Do you have “good days,” and if so, what do they look like?
My good days are good. My pain tolerance allows me to ignore any minor pains. I usually overdo it and am resting for the next couple of days.
Have you noticed anything that seems to trigger or worsen your symptoms?
I put myself on an elimination diet and I do believe some foods will trigger a flare. But usually stress is the main factor along with physical exertion
How has rheumatoid arthritis affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
It has taken a lot away from me. I need to cut back at work but can’t due to insurance needs. I don’t make too many plans and they are usually during the day and I crash when I’m done. I’m hoping to get back to hiking and biking.
Has rheumatoid arthritis had an impact on your finances or access to care?
OMG! The things I could have or even the savings I could have!!! Even with insurance this is a very expensive disorder. I live in an area where there are many doctors, so access to healthcare is there it’s just insurance companies that prevent it!
What has your experience been like with doctors, rheumatologists, and navigating the healthcare system?
I am going to just say, advocate for yourself and find a doctor that hears you and fights for you. I’m on my third and I will live where I am because I won’t leave her! Honestly it’s extremely stressful and frustrating. Catch 22 … stress is a trigger
What has your experience been with medications, treatments, physical therapy, lifestyle changes, or other approaches to managing rheumatoid arthritis?
I went from methotrexate to humira ( which the insurance company denied then denied the generic and then it failed. My blood pressure spiked and I had to change again. This time I have to get my orencia by infusion so it is covered after my 5000 dollar deductible. It’s a roller coaster! I’ve had squamous cell and melanoma stage 0 as all of these medications and RA can increase the risk of skin cancers. Lovely I get to now see the dermatologist every three months. Exercise when I can and get your sleep! I’ve learned to let others deal with their emotions if I have to change plans or say no.
What has it been like to live with a condition that others may not fully see or understand?
I think I just realized after 11 years that no one will understand unless they experience it themselves. It’s true that I just say “ I’m good “ or “ I’m ok”. There is no way for them to understand unless they take the time to read. I have found that these people are your real friends and family
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Absolutely!!!!!!! All the time.
How has rheumatoid arthritis affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
My family has been supportive. Very supportive. Now I had stopped dating just because I was so over it! lol! I learned to enjoy myself and find my peace. I found it easier alone. I guess my higher power did not want that and brought a very dear friend back into my life and he is the most supportive loving and caring man. I am fortunate. Always be honest with who you are with.
Has rheumatoid arthritis affected your intimacy or sexual life in any way?
Well let’s say I had given that up too but my partner is patient and loving and my sex life is wonderful. It can actually help with pain and relaxation if you have the right person. Since I’m 63 now it is different anyway
What has the emotional or mental side of living with rheumatoid arthritis been like for you?
A roller coaster! Up and down! Sometimes I just break and cry all day but I allow myself to do so
How has rheumatoid arthritis affected your relationship with your body, identity, or sense of self over time?
Yes I just don’t feel as vibrant and pretty anymore but that can be an age thing, plus the added weight, which is not a tremendous amount but just enough to mess with me.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Unfortunately exercise helps but can also hurt. I am best when I do or if I get into a project at home. Diet does matter. I did an elimination diet and cut out refined sugar, oils. Dairy and gluten.. for a bit night shade veggies. I felt better but still had pain just not as many flares.
Have you connected with other people who have rheumatoid arthritis, either online or in person? What has that experience been like?
I belong to some facebook groups but would love to get involved in being an advocate now if my fatigue continues to get better
How do you feel rheumatoid arthritis is understood by the medical community, society, and the media? What do you think needs to change?
It is not arthritis!!!! It is an autoimmune disorder!!! People think it’s “ just arthritis “ please change the name
What would you like more people to understand about rheumatoid arthritis?
It is unpredictable, there is no cure and it is progressive! It’s not just like your knee or your arthritis! It’s debilitating
How has your relationship with rheumatoid arthritis changed over time?
I think it has beaten me down a bit because I was a real fighter at first . This bout with the fatigue has made me more depressed and unsure. I will get my fight back
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with rheumatoid arthritis?
I have more compassion for people in pain or fighting something they have no control over. Also my bulls*#t meter is on high alert and I don’t have the patience for drama
When you think about the future, what fears, concerns, or hopes do you have regarding your rheumatoid arthritis?
Lots of fear! Fear of the medication not working or the insurance companies not cooperating. Fear of the pain and deformity. One fear I don’t have is … I am not afraid to die , this is a horrible disease
Is there anything else you’d like to share?
Advocate for yourself and let people be with their own feelings when you make decisions for you!!! They will either stay or go but don’t let others dictate how you care for yourself