LIVING WITH A DISABILITY

UV Protective Hat that covers the shoulders. Great for wearing outside on a nice sunny day. Always wear your sunscreen.

UV protective umbrella with double layers. Can also be used in the rain. Always wear your sunscreen.

Lupus is an autoimmune disease as well as a chronic disease. It causes a great deal of pain and inflammation in the body and not in a specific area. We’ve all learned that our immune system is the part of the body that fights off infections; however, for individuals living with lupus, their immune system attacks healthy tissue inside of their body. When looking at lupus, there is not just one type, but four and the most common is Systemic lupus erythematosus; then there is Discoid lupus which affects only the skin; Drug-induced lupus is caused by prescription drugs, and lastly Neonatal lupus which affects infants of women who have lupus. Systemic lupus erythematosus (SLE) and Discoid lupus are the two that I hear about the most; however, I have researched lupus a great deal over the past couple of years, and I’ve been able to learn about all four. I’m sure by now you are wondering why this first blog is about lupus and the reason is, I am living with systemic lupus or SLE. Since this first blog is posted in the month of May, it’s very fitting because May is also Lupus Awareness Month and I, the Founder and Executive Director of Joseph’s Heart am living with a disease that affects my joints, skin, and brain, but could potentially affect my other internal organs and I would like to share my experience.

 In September  2017, I went through an incredibly stressful situation, which was the loss of my oldest brother, and it was very devastating. While dealing with his affairs and the issues within the family, I became stressed for an extended period. In 2018, my younger sister was getting married and while at Oakland International Airport with a dress, bag, and dog in hand, I was running through the Airport trying to get to my gate because I was about to miss my flight. In fact, I could hear my name over the loudspeaker as a final call to board the plane. I know you may be wondering what this has to do with lupus and I am about to tell you because it was on the plane that I had my first, “flare up” or my body’s reaction to stress due to the lupus; however, I didn’t know that was what was happening until a year or so later. Anyway, Prince and I, (Prince is my dog) boarded the plane, within 10 minutes, I was very congested and could not understand why. I was not congested when I left home and I did not have any cold or flu symptoms all week. My sinuses were a complete mess and my face felt horrible and what made matters worse is that I had to be the matron of honor in my sister’s wedding the next day. Once we got to LA County, I bought allergy and cold meds and the only way I felt relieve is when I took them both very close together. What I later realized is that my sinuses are sometimes attacked when I become stressed, or I am exposed to UV rays for too long which are two terrible things for people living with lupus and I will touch on that in a little bit.

That wedding was in October 2018 and by the beginning of 2019, I began having other symptoms and saw doctors and that later diagnosed me with Undifferentiated Connective Tissue Disease. Over the course of the year, I began to have even more symptoms until I was officially diagnosed with SLE in March 2020; however, I’m unsure how long I’ve had the disease. Anyway, for me, it affects my joints and skin and I also have a neurological component that I will talk about in a bit. Living with lupus has not always been easy, as a matter of fact, it was a struggle until I really learned the disease and how my body responded. One mistake is to believe that everyone’s body with lupus reacts the same, that is very far from the truth. However, one thing that is true, if a person with lupus has other diseases, it can make the lupus flare up, or should I say, the symptoms of lupus can begin to come to the surface. Like I previously said, my lupus attacks my joints, primarily in my wrists, hands, and fingers. My joint pain was so bad I was dropping things. I also experience mouth ulcers, hair loss, fatigue, headaches, and photosensitivity. The photosensitivity is so extreme that I sometimes get sores on my body and my scalp burns for a few days from being outside for too long. My sinuses will sometimes flare up from UV exposure and I am always exhausted after being exposed. This doesn’t just happen outdoors, but also indoors. Spring, Summer, and part of Fall are the worse for me because the UV index usually gets high and will also come through the house and car windows. I had to get my car windows tinted to protect my skin, which only helps if I am not in the car for too long, but if I am, I usually become extremely fatigue and nauseous. While in my house, I’m supposed to keep my blinds closed, which provides better protection, not 100%, but it helps. To be honest, I love natural lighting during the day, so I don’t keep my blinds closed, so I just chose to do my best to stay away from the windows until the UV index drops below 3, which is when it doesn’t affect me.

The best thing for me is to stay in the house when the UV index is high which is between 11am and 5pm, but that isn’t always realistic, so since I love to research, I decided to do just that, and I will share more of my solutions. So, in addition to the tinted car windows and closing the house blinds (which I don’t do), a person living with lupus with photosensitivity can wear UV protective hats to protect their head or use a UV protective umbrella. I have both these items, in fact, I have several hats to protect my head since my scalp tends to burn. Also, sunscreen is necessary, and I must use sunscreen with an SPF over 50. I’m not sure if this is for everyone living with lupus or if it’s patient specific. I’m also supposed to wear sunscreen when staying in the house, I don’t always do this, but I try. My goal is to do better.

Now the neurological component that I said I would talk about, I will share now. I had an MRI in June 2021 and when I met with my neurosurgeon for a hemangioma that I have (a separate issue), he told me that my results showed that I had a small stroke that he believes was caused by the lupus. What’s crazy is that I didn’t even feel the stroke! God is so good. When discussing symptoms, the short-term memory decline, difficulty spelling words and remembering words, slow reaction time, all the things I thought were due to my getting older, were really results from the stroke. Most of these have gotten better, some are still a struggle, but I still give God praise because it could have been worse. I asked the doctor what can be done to prevent another stroke and his response was that it was already happening. Of course, I looked at him with a puzzled look and he proceeded to share that since I’m currently taking blood thinners because I have Factor 8 (blood clotting disorder) the blood thinners should help to prevent future strokes and since I am on them for one thing, they will help with the other. I’m on blood thinners long-term which will hopefully mean that my chances of having another stroke are exceptionally low.

So, let’s talk doctors. I am big when it comes to advocating for my health. I’ve have too many “horrible” doctors that did not listen for me to not fight for myself or the people I care for. I currently have a rheumatologist that I see regularly for my lupus, and he is great. He takes very good care of me and been good at managing my lupus. I think he’s my fourth rheumatologist, Don’t judge me…LOL. I will fight for good healthcare and if I don’t think that you are doing your job, I will find a doctor that will. When I switched to him, my lupus was so bad, I was having issues in other areas of my body and seeing other specialists. Once the lupus was managed, those other issues started to become better. He (my doctor) said that my labs are the best they have been since I have been his patient and he’s been my doctor for a little over a year. Do I still have a flare here and there, of course I do, but I just make sure I get some rest, try to determine what caused the flare and get back on track. I do my best not to stress, eliminate stressors, and try not to sweat the small stuff. Stress is kryptonite for lupus and anyone living with this disease should do their best to minimize the stress in their live. If I don’t like something or have a problem, I try change it, but if it can’t be changed, then I try not don’t trip about what I cannot change. I trust that God has a plan for my life and that He knows what is best for me. I have Systemic Lupus, Factor 8, a hemangioma in my brain, two cerebral aneurysms that were repaired in June 2020 and as a result, I have an MRI annually to make sure they have not reappeared, and I have an optical aneurysm behind one of my eyes. I also have Raynaud’s Phenomenon which is when my body becomes too cold or even stressed. A lot of people with lupus and other autoimmune disease have Raynaud’s. I continue to press on because it is what I need to do. I thank God that I don’t look like what I’ve been through. Looking at me, you would not be able to tell I’m living with multiple illnesses and that am sick and honestly, that’s the way I like it because I don’t like to be pitied. Like myself, others living with lupus don’t look sick, but it doesn’t mean that they are not. So, if someone chooses to share their story, please be careful with the words used, especially “you don’t look sick.” Some people take offense to that statement.

I hope and pray that someone is blessed by my story, and I honestly believe that what I am going through is not just for me but may help someone else through their journey. Please be blessed and have a wonderful month. If you know someone living with lupus, take some time and talk to them about it or just ask them how they are feeling. Trust me, it will make the difference.

My love to you all and Happy Lupus Awareness Month!!!

Don’t forget to wear purple at least once this month in support of lupus.

                                                                                                                                           Nakia F.

                                                        Founder/Executive Director                         

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