I have rheumatoid arthritis, I got diagnosed with rheumatoid arthritis around the same time I got diagnosed with psoriatic arthritis. I apparently had ignored the early signs of it, and it was already in the stage of the disease progressing itself and the damage being done to my joints and bones. I was overwhelmed when I found out because there was another cause for my pain, another disease. If you’re keeping track, I’m now at 4 auto-immune disorders, 4 chronic illnesses. In total present day I currently have 6 auto-immune diseases and 8 chronic illnesses. There are no cures for my illnesses, I can go into bouts of remission, I might have low symptom days, but I will not get better or be cured. I have come to terms with this, it is not me being negative it is me just accepting the truth. There is are a lot of issues in the medical field especially being a woman who complains about pain and there’s nothing that you can physically see to account for it. Statistically it has been proven that women going to the Emergency Room complaining of pain we can often go 2 hours and 35 minutes before being seen versus when a man goes to the hospital complaining of pain he can walk in and out with a prescription in 45 minutes.

What is rheumatoid arthritis?

Rheumatoid Arthritis is a long-term autoimmune disorder that primarily affects joints. It usually results in warm, swollen, and painful joints. Usually, it affects the wrists and hands on both sides of the body. The disease may also affect other parts of the body, including skin, eyes, lungs, heart, nerves and blood. This may result in a low red blood cell count, inflammation around the lungs, and inflammation around the heart.

Whatever it is, the way you tell your story online can make all the difference.

How did I get diagnosed?

I got diagnosed with rheumatoid arthritis while being diagnosed for psoriatic arthritis. My rheumatologist realized looking at the scans and my symptoms that there was more cause to worry than just the psoriatic arthritis. I had more symptoms than what came with psoriatic arthritis such as fatigue, pain in all of my joints and iron deficiency.

My experience with treatment

Right after I was diagnosed, I went gluten and dairy free because my doctor had read that it helped long story short the natural route with food and supplement hasn’t helped my condition, I wrote about it in detail in my psoriatic arthritis post. Right now, with rheumatoid arthritis I’m more concerned with stopping the disease and the pain. I am in ongoing aquatic, physical and occupational therapy to help me build the surrounding muscles in order to compensate for those bones that cannot work as they once did.

How has it impacted my life?

I’m not going to sit here and say arthritis hasn’t completely derailed my life because it has. Chronic pain has completely changed everything. Rheumatoid Arthritis has also eaten away at the bones in my spine and caused a curvature towards the end of my spine and my bones falling to the side instead of lining up on top of each other causing another chronic illness called Spondylitis. Currently, I’m at what they consider Grade A Spondylitis which is still extremely painful. This causes my discs to sit on my nerves, which in turn causes nerve pain down to my knees so when I’m sitting for long periods of time, I have trouble walking, I have trouble bending over, I have trouble standing, and getting up from chairs.

My main advice to people is to keep up with their pain management whatever it may be. My course of treatment or maintenance for my body I like to call it was medical treatment, acupuncture every 4 weeks, chiropractor visits ever week, and massages once a month. This course of maintenance kept the flares at bay majority of the time. Because of the pandemic, my treatment was stalled, and pain management locations were considered non-essential, also I’m considered high-risk, so I was quarantined. This past year I have been in one of the worse flares I have ever experienced which caused immense trauma to my body.

Support:

t’s very hard for family and friends to understand what you are going through. I have learned is keep educating yourself, educate them if you have to but eventually they’ll come around. You can’t blame them, it’s very rare for you to go from being “normal” to have your whole life fall apart. Depression runs very high in chronically ill patients especially those with excess inflammation, because of the excess inflammation of the brain. The things I’ve looked to for support is my immediate circle, I wasn’t as fair to mine and didn’t open up to them all. I’ve also found a lot of help in talk therapy; it’s helped me with managing my pain threshold and advocacy. I’ve joined several online support groups because honestly sometimes the pain is too much to show up anywhere in person. There are so many people around the world dealing with these same issues and they’re all willing to talk about it and help each other out. It really is a wonderful community.

I have psoriatic arthritis, when I first got diagnosed with psoriatic arthritis it was overwhelming, but I felt relief wash over me. There was a reason for all this pain I was feeling. I had been told by so many doctors the pain I had been feeling was my weight, was because I had popped my knuckles as a kid, was because I was clumsy. It shows how much fatphobia there is in the medical field and these past few years I have taught myself how to advocate for myself with everyone not just medical professionals. I have written some complaints, have been a part of some hospital reviews, and I will continue to do them whether I win or lose because no one deserves to be treated that way. As kids, not sure if it’s a cultural thing or the fact that I’m a woman of color but we are internally taught not to show our weaknesses. Think about it how many times did our moms go to work while they were sick, how many times were women taught to be strong, throughout history we’ve had to show everyone that we can handle anything that life throws at us and work an 8-hour day, but that’s a topic for another day. I was also taught not to have anyone feel sorry for me, which I still don’t want. But if I’m speaking honestly keeping quiet about my chronic illnesses has done a disservice to me. I’ve done more damage to my body by not speaking up when I’m in excruciating pain and I’ve also missed out on such an amazing community there is. Having a chronic illness is often debilitating and oh so isolating. I can count the days I’ve been in so much pain that I haven’t left my bed or spoken more than 10 words. However, there’s a community that completely understands me, is constantly checking in on me, giving me new shows and movies to watch, and just making me feel part of society.

Psoriatic arthritis is a long-term inflammatory arthritis that occurs in people affected by the autoimmune disease psoriasis. The simple way it was explained to me was the same way my skin looks with psoriasis is how the inside of my body looks. My bones and joints have the same scarring and holes that the outside has. Psoriatic arthritis also causes several other issues such as swelling in fingers, toes and wrists; inflamed joints; dents in nails; patchy and itchy skin; excruciating pain on wrists, knees, fingers, hands and toes; physical deformities in hands, knees, fingers, wrists and toes; tendonitis; and but not excluding to stiffness in hand and knees. Any of these symptoms can come up during a flare, a flare is categorized as a moment of intense pain, a flare can last anywhere from a day to several years.

How Did I Get Diagnosed?

In 2013, I started seeing red and white splotched all over my arms. My doctors thought it was anxiety induced eczema. I was moving out of state, starting law school, and dealing with childhood trauma. After several years and different creams, it wouldn’t go away. Finally in 2015 after several doctor visits and noticing different changes of weather affected my rashes and body pains, my doctor confirmed psoriasis however he didn’t want to move forward until I saw a rheumatologist. His theory was there are many treatments that could treat both. I went to a rheumatologist for my first initial visit and after my first ultrasound I saw the looks on their faces and knew I was in trouble. After the initial bloodwork, my Vectra and ANA levels showed the amount of pain my body must have been in, the amount of pain I had been in. I was then diagnosed with psoriatic arthritis, rheumatoid arthritis, & fibromyalgia. I remember I looked at him and said ok great, but my life isn’t going to change I’m 28 years old, I travel for a living, and I’m not going to be on drugs for ever. He said ok we’ll figure out a plan.

My experience with treatment:

Right after I was diagnosed, I went gluten and dairy free because my doctor had read that it helped some patients with their inflammation levels, but I had to try it out for 6 months for it to work. So, I said I’ll do it. I went straight to Whole Foods & Trader Joe’s and bought every type of dairy free cheese they had, because your girl had to have her cheese. I remember for 6 months I would go grocery shopping and I would do it all. After the 6 months they did a whole work up to see the actual difference it made. I was anxious because I thought I had found the cure. I was going to be pain free. My life was going to belong to me again. I couldn’t be more wrong. My inflammation levels hadn’t changes at all, not even a little bit. My disease was progressing, not only that I had gained 50lbs so there was an underlying issue we had to find. I distracted myself with work and just kept going. I went on a few trips for work after that and decided when I got back, I would deal with it.

When I got back from that trip, I remember being in the worse pain I had ever been in and that’s when I tried acupuncture for the first time, and it was life changing. I started Otezla and Methotrexate injections, which I dreaded, I was traveling through Europe with my little stash, and I remember Otezla made me so sick that once I got back, I tried it for a few more months and then had to get off of it. I then went on to try biologics and see how they would help me. Unfortunately, I had adverse reactions to several of them. I tried Embrel, which is the ultimate miracle psoriasis drug, and not only did it do nothing for my skin or pain, but it gave me more pain. I then went on to try Cimzia when it was still in its trial phases, I’ve done a lot of clinical trials, so they don’t phase me anymore. That one did absolutely nothing to me.

I decided to switch doctors and went over to the University of Miami. When I was diagnosed with my first chronic illness when I was 18 years old, I got a lot of answers there so I when my acupuncturist recommended me a rheumatologist over at the University of Miami, I decided it was a sign. I went over there, and she immediately started treating my fibromyalgia which gave me immediate relief, which I’ll go into more detail in another post. She then started researching my psoriatic arthritis and medications for me. She recommended Taltz and I have been on Taltz for a little over a year and it has worked wonders for my skin and pain level. Taltz restricts my disease from progressing and helps keep my skin clear by stunting my immune system, which makes me more vulnerable to upper respiratory infections and causes me to get sick more easily.

How has it impacted my life?

I’m not going to sit here and say arthritis hasn’t completely derailed my life because it has. Chronic pain has completely changed everything. At the beginning of treatment, it was manageable I was able to travel. My main advice to people is to keep up with their pain management whatever it may be. My course of treatment or maintenance for my body I like to call it was treatment, acupuncture every 4 weeks, chiropractor visits ever week, and massages once a month. This course of maintenance kept the flares at bay majority of the time. Because of the pandemic, my treatment was stalled, and pain management locations were considered non-essential, also I’m considered high-risk, so I was quarantined. This past year I have been in one of the worse flares I have ever experienced which caused immense trauma to my body. When there is immense trauma to the body there are higher chances of another chronic illness coming to the surface which in my case is what occurred.

My Support System:

It’s very hard for family and friends to understand what you are going through. You can’t blame them, it’s very rare for you to go from being “normal” to have your whole life fall apart. Depression runs very high in chronically ill patients especially those with excess inflammation, because of the excess inflammation of the brain. The things I’ve looked to for support is my immediate circle, I wasn’t as fair to mine and didn’t open up to them all. I’ve also found a lot of help in talk therapy; it’s helped me with managing my pain threshold and advocacy. I’ve joined several online support groups because honestly sometimes the pain is too much to show up anywhere in person. There are so many people around the world dealing with these same issues and they’re all willing to talk about it and help each other out. It really is a wonderful community.