Tell us a little about yourself and your family
I’m a former high school educator of 20+ years. Before teaching I was a performer and star in several documentaries now online. In addition I am an artist of 30 years. I have no family to speak of. I earned numerous degrees in my home state of California. Recently 75 pieces of my work were accepted in the New York Public Library Archives new acquisitions division. I recently decided to resume my photographic career in spite of the limited use of my hands. Interests include my continued mentoring of youth in the arts, continued study of all art forms and am an avid reader. I am interested in filming documentaries to showcase the struggles of my former students in the Koreatown/Hispanic inner city of Los Angeles. I am a prolific writer with over 100 notebooks of writings. I have over 50+ black books of my visual work and am preparing them for digital publication.
When were you diagnosed with RA/Rheumatoid Disease?
I was diagnosed with chronic illness in 1998. However it was not clearly specified as RD until 2008. At the time the doctor I had did not know how to address my RD. In 2013 a new doctor tested for RA factor and referred me to a Rheumatologist where I began medicinal treatments, none of which worked. To this day, the amount of medications prescribed have not worked. I will be starting biologic infusions soon.
What was your first symptom?
My first symptoms were chronic fatigue, severe pain in wrists, fingers, shoulders, knees, ankles. It has now progressed to the joints in my jaw bone.
What is the biggest way rheumatoid disease has affected your life?
Rheumatoid Disease has turned my life upside down. I had to quit working as I became immobilized. I can no longer do ordinary activities such as laundry, home cleaning, grocery shopping, driving, carrying and lifting anything over 6-7 pounds. I have to be careful to not do anything that will impact my joints. Six of my fingers are deformed and have severe pain. Several of my toes are currently twisting into what looks like early deformity.
What has been your experience with treatments for rheumatoid disease?
My experience with treatments has been minimal to say the least. The first five treatments and medications did not work. Additionally a pill steroid worked for a few years and no longer works now. Physical therapy helped for awhile. OccupationaWhat do you want the public to know about rheumatoid disease?l therapy was totally inadequate. I am set for biologic infusions soon. I am currently seeking acupuncture treatment and other alternatives.
What do you want the public to know about rheumatoid disease?
I need the public to know that RD is an immobilizing, severely painful illness. I now refuse to call it RA because most people equate it with Osteoarthritis. RA/RD is nothing close to Osteoarthritis. The public must realize that RD makes it impossible to open jars, twist open water/juice/condiment bottles. Due to the hand/shoulder/elbow pain, my strength is minimal when attempting to open windows, doors, brush teeth, shower, and dress. Pulling socks on is impossible for me. The public should be aware that walking stairs is a major challenge and that people with RD need assistance. They should also know that some of us must hire house cleaners, food preparers medical caregivers and shoppers which I and others must pay out of pocket for. They should also be aware of the daily chronic fatigue, and that it takes in my case four hours for my body to fully awake while my fingers uncurl. Brain fog is a real thing. With excruciating pain, the mind cannot properly function. And the public should know to not say “You don’t look sick.” This is an invisible disease until I show my deformed fingers which I try to hide. The public should also know that many of us are highly prone to infections as the medications cause our immune systems to not normally function.
How have you worked to overcome challenges presented by rheumatoid disease?
When attempting to sleep I talk to my pain. I ask it to stop. Of course it doesn’t but it helps me to fall asleep until the pain wakes me up throughout the night. I advocate for myself with my doctors and always bring a friend into the room. Having a positive mindset is important despite the fact that there is no cure for RD. On good days having lunch with a friend, walking outdoors with assistance, or having a friend to drive me to see my favorite places help to push through the day. Light exercises such as lifting my arms, stand to sit, sideways stepping, finger exercises all per physical therapy learnings also help to push through the day. Napping is essential. Forgoing emotional stress is vital. Deep breathing, meditation, gentle music and speaker phone talk help. Drinking herbal teas, taking my meds even if they are not working, and picking my camera up when a friend brings me out for photographing help. It’s vital for me to not lose my passion for the things that sustain me. Hot showers with assistance, immersing hands in hot water and using heating pads contribute to a feeling of semi-wellness. On days when doing anything is hopeless, watching Netflix, listening to podcasts, and venting to a friend help to give a sense of distraction and acceptance for my illness. Being cognizant of proper diet with plenty of Omega-3 foods (fish), fresh vegetables, certain fruits and drinking plenty of water help somewhat. Avoiding sugar, refined foods, and toxic foods help. I take supplements Curcumin, B-12, Magnesium and others. However I’m aware that the vitamin industry has many downfalls such as not placing black pepper into Curcumin for example. The properties of Curcumin will not be released into the bloodstream unless black pepper is included in the supplement formula. I diligently read ingredients in supplements and food products. I never purchase supplements online.
What have you learned through living with rheumatoid disease?
I’ve learned that slowing down is a huge benefit. I have Type A personality traits and understand that in some ways RD is a blessing in the sense that since I no longer have the ability to tackle my days in a rip-roaring manner, I’m able to have gratitude for the small things in life. I have a new sense of compassion for others due to my struggles. I learned that I cannot struggle with RD alone and belong to several online autoimmune disease support groups which are crucial for my not feeling alone in this battle. I learned to accept that RD does not define me but that it is part of my journey. I learned to listen to my body and use good sense when making decisions and that it’s okay to cancel events I accepted when not feeling strong.
What encouragement or advice would you give to someone who is newly diagnosed?
I would tell anyone with RD to listen to and question your doctors. Find support groups online or elsewhere. Educate yourself and fact check all information found on the internet. Develop healthy eating habits and demand the best care from your doctors. Exercise and create a healthy relaxing lifestyle. Above all, never be discouraged. One can still live a good life with early to advanced RD, no matter the severity.