Born and raised in San Diego, CA I was diagnosed with Lupus SLE at the age of 23 in 2007. An uncle of mine also has lupus and is paralyzed due to a stroke and kidney failure causing him to be on dialysis. I would assist with his at home care so I had firsthand experience in seeing the effects of lupus on someone’s life.

My own diagnosis began with severe joint pain that doctors dismissed as carpal tunnel due to my young age. Only with persistence on my part to ask the doctors to test me for Lupus were the doctors able to find out I had lupus sle.

Throughout my lupus journey I have additionally been diagnosed with hyperthyroidism, asthma, diminished lung capacity, neuropathy, Raynaud’s disease, anemia, high blood pressure, insomnia, and arthritis. I have under gone a kidney biopsy, surgery to remove half my thyroid, chemo therapy treatments twice for a total of six months, nerve testing, and yearly lung function tests. I have had an invasive right heart cath procedure done that resulted in me getting a blood clot near my lungs. I have had pneumonia and shingles multiple times. I have experienced hair loss, tooth decay, skin rashes, open wound skin ulcers on multiple body parts, multiple hospitalizations, depression, and muscle loss that resulted in me being wheelchair bound for a number of weeks.

I have been told by doctors that my body is shutting down and yet still by the grace of God I am here to raise my three children.

I have been living with lupus for 14 years now and refuse to let it bring me down. My favorite phrase is “she’s got lupus, lupus does not have her”. I sell lupus awareness gear here on my blog shesgotlupus.home.blog.

I am always available to offer support and encouragement on your own lupus journey. You can email me at rosadela@gmail.com anytime. Or contact me through social media: Instagram: shesgotlupus, Facebook: Rosadela Durruthy, Twitter: @rosadela619

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So a few years back I was hospitalized and doctors told me my body was shutting down due to a lupus flare up they couldn’t control. When my body began recovering I was still getting shortness of breath walking short distances, even just up a short flight of 10 steps, so I was referred to a pulmonologist. They performed pulmonary function tests and x-rays and I was diagnosed with diminished lung capacity due to scarring on my lungs. What I understand of this diagnosis is that during a lupus flare up, the lupus began attacking my lungs causing them to form scar tissue around my lungs. So the scarring around my lungs restricts my lungs from fully expanding and getting enough air..causing shortness of breath. At my last check up a year ago I was told my lung capacity was at 60%. At 35 years old I was given two options, have an invasive surgery to scrape the scarring from my lungs with no real guarantee that I would have full lung capacity or they told me I was a good candidate for a lung transplant because of my age. I’m sure the tears in my eyes when the doctor told me let him know I wasn’t ready to make any decisions so for now I just see my pulmonary doctor every 3 months with pulmonary function tests in between.

I still have shortness of breath so I do use an inhaler but I try to walk daily so I can attempt to maintain a healthy lifestyle and I keep telling myself I am building up my strength.

Unfortunately, thanks to my diminished lungs I am also far more susceptible to pneumonia and constantly have fluid in my lungs. I get pleurisy more often so when I get minor colds I have inflammation on the tissue around my ribs and it causes sharp pain around my ribs when I breathe.

Recently, I started reading about sea moss and it’s benefits for your body and considering the medical options I was given above, I feel like what harm could come from trying more natural remedies? I even found some one local who makes and sells sea moss gel. I just today used the gel in my tea this morning and I didn’t taste a thing but I’m very curious to see the benefits I may gain from continued use. In case you haven’t heard of sea moss and what it is or it’s benefits, sea moss is a type of red algae that grows on the Atlantic coastlines of North America, Europe, and the Caribbean Islands. It has potassium iodide, which is great for dissolving phlegm in clogged airways. It also rich in amino acids, vitamin C, antioxidants, as well as a host of antiviral and antimicrobial agents. These nutrients can help you to fight or ward off infections. So it is an anti-inflammatory (good for lupus patients) and expels mucus.

I’m curious to hear any stories of people who had similar lung problems or inflammation problems and use sea moss and any improvement they’ve seen? Make sure you subscribe to my blog or comment. I would love to keep in touch with the lupus community. My Instagram is ShesGotLupus

As I sit here wide awake I see it’s 2:52am and I’ve been fighting falling asleep since about midnight. Nothing like feet numbness causing pain that keeps you up all night. I finally take a Gabapentin to help the nerve pain go away long enough for me to fall asleep but this whole week it’s been creeping up on me and tonight it was just overwhelming. It started as an itchy feeling in my lower ankles, the next night was itchy with slight numb feeling and tonight full blown itchy skin and complete numbness in my feet and toes that has got me wide awake. I am welcome to suggestions for ways to sleep better or through the night. If I do fall asleep I usually wake up around 3am, the so called “witching hour” and am just in bed restlessly tossing and turning. I try reading, there’s so much Netflix and tv shows you can take. Anyways. No real reason for the post other than to showcase a symptom many other Lupies experience and that’s insomnia. Be kind to someone going through lupus, we may not “look” sick but there’s so much going on under the surface.

It was slow at work so I just started doodling and this definitely has been my mood. I’ve actually just been a moody mess for a couple weeks now. I can’t wrap my mind around things we are all just trying to survive right now. The uncertainty across the WORLD has me so confused. I’m an emotional person as is so to be told to not let me emotions control my mind further frustrates me.

The beginning of the year, as did many others, I felt this would be my year. My divorce would be final, my legal issues would be resolved, I got a new job, I was getting my license back, I would buy a car, I was going to move out… then, the pandemic hit the United States. God hit that pause button on everything. I took it personal. I could only see how I was being affected. Why are my plans being halted? Why can’t I just get this finished? My patience has been on thin lately and I just don’t want to deal with any one anymore. Considering I live with 6 other people in my home and have three kids obviously I can’t just check out. At work I put my customer service face on and I can talk with over 60 patients daily. Sis is tired. Mood swings have been extra and this last week I have just been trying to figure out how I can get my peace of mind back.

I wake up a little earlier and try some (easy) exercises. I read my Bible app and do plans with friends, cause I know they’ll hold me accountable. Today I started some podcasts that I enjoyed. I have to get out of my victim mentality and remind myself who I am. My name is victorious, as is yours. The way my anxiety is set up I’m going to have to keep reminding myself too. This doesn’t mean I’m out of the darkness but I’m pulling myself out. Day by day is my motto for this new normal we’re all in. If anyone feels overwhelmed as well my messages are always open. There’s no reason any one should feel alone out there.

I’m lying. No I don’t. I’m stressed. I’m worried about going out every day to work with a suppressed immune system when every where I look I’m told I should be locked away in a bubble to stay safe. I’m concerned about how are my three school age kids going to do distant learning with a momma who isn’t working from home, one being a kindergartener who has special education needs. I’m anxious about an uncertain future. Matter fact, all of the stress and anxiety at the beginning of this pandemic caused my lupus to react and I got shingles. For the fourth time in my life. In case you’re unaware of what shingles are, it is a reactivation of the chickenpox virus in the body, causing a painful rash. It started with tiny blister bumps on my arm that turned to a very painful rash that covered my entire left arm. Even three weeks later from when I finally went to urgent care for medication my arm still has some pain and itching from the blisters drying up. Nerve pain can last a year later. This is just what happens to me when I’m stressed. I have come to practice coping skills to try to calm my fears and tell that little voice of Worry to be quiet. I journal. I *try* to meditate. It’s hard with three kids so I wake up earlier, read my Bible app and devotions. I go for long walks in nature. I’m not sure what is calming to you in your storms. Lately tho with all that’s going on in the world we are on a negative news overload and it’s so easy to let it consume you but we have got to remember that God will bring us through this. This too shall pass. I have faith that me, my family and my loved ones will survive this. There will be times of struggle but so long as we continue to believe we gon be alright.

Learn. Connect. Advocate.

Each March, lupus advocates join together at the Summit to share their stories with Congress in hope to support policies to increase funding for lupus research. Every year I have seen posts about the National Lupus Summit and was bummed I couldn’t go, either not healthy enough or couldn’t afford it. This year though the Lupus Foundation has decided to make it digital so I’m thrilled to be able to witness what goes on during the Summit. On Monday, March 16 will be the first ever digital summit open to the entire lupus community. You will be able to connect to fellow advocates, learn from experts in the lupus community, and meet partners in the fight against lupus – all online!
You can read up on how to advocate for yourself or a loved one suffering with Lupus. Click here to go to official page for the Lupus Foundation. Also, don’t forget Virtual Advocacy Day on Tuesday, March 17

Going to remind everyone about the Walk to End Lupus this summer. I formed a team, BEAT LUPUS SD, I’ve got Lupus Awareness shirts and gear for sale here. Thanks and I hope to see everyone there!

Living with Lupus can have a huge effect on someone’s mental and emotional well-being. Being diagnosed with a chronic illness brings emotions like grief, fear, anxiety and depression. The uncertainty that comes with being told you now have an illness that has no cure is frightening. I was first diagnosed at 23 and because my uncle has been surviving with Lupus I already was familiar with the disease but I was still terrified. Due to lack of knowledge about Lupus the people around me did not understand what I was going through. I wasn’t willing to share my feelings and kept it bottled inside. I began carrying a weight on my shoulders that would eventually pull me down.
I was able to manage my Lupus for years without being on medications. It wasn’t until I got married to an abusive man that the stress caused my Lupus to really flare up. I experienced physical and emotional abuse for a few years not understanding the emotions I was experiencing was not only mentally draining but also draining to my body. I was constantly in the emergency rooms and hospitals being treated for my Lupus flare ups and consequently other illnesses began to arise thanks to Lupus attacking my organs. With all the constant hospitalizations, abusive marriage, losing my job and independence to my illness, chemo treatments and taking multiple daily medications I was unknowingly spiraling straight into a deep depression. My physical illness quickly became a mental illness as well. Thanks to my lupus flare ups I wasn’t able to physically care for myself let alone my kids. I began losing motivation to do basic tasks. I’d sit in my room in darkness. I remember crying one day praying to God take away my pain, and going to sleep wishing I wouldn’t wake up. It’s not that I didn’t love my kids or my family, it’s that the pain was so intense I knew no other way to make it stop. When I woke up in the morning it’s like an angel said, no Rosa you’re time here isn’t done. My purpose wasn’t fulfilled yet. I can’t tell you exactly what my purpose is but I know I am meant to be on this earth still. Slowly I was making effort to return to my kids, to me, the woman who i used to be. Before Lupus took over. Before I lost my self worth. I learned to give God my pain, my worries, my troubles and trust that He will carry my burdens. I am humbled by my pain and I welcome Gods grace. Yes I still have pain days. Sure, bad things still happen. God said it would happen. But He also said no weapon formed shall prosper. So that’s what I will continue to remember when I have my struggle days. Let go and let God. That was just a chapter of sadness but it is not the conclusion to my story.

In May of 2019 I sat down with my good friend Patty Medina, founder of Hooper Mentality, and we discussed Lupus and Mental Health. I am learning to release my fear of being uncomfortable and so I share this vulnerable post with you all in hopes that if you are struggling with feeling sad, or unworthy, or damaged, insecure..just know that you are not alone. I also want you to know that just because you feel those things does not make them true. You are worthy, you are restored and you are confident. The road to healing is a process, don’t expect to reach it overnight. Don’t try to do it alone. I leave you with this verse from 1 Peters 5:7 Since God cares for you, let him carry all of your burdens.

National Suicide Prevention Lifeline 1-800-273-8255

Never fails. Every morning I wake up stiff, and it takes me a good extra hour to really get up and moving around. By the time it’s bed time I’m fully functional and start doing things I couldn’t complete in the early morning hours. Now that I work again it’s hard to get more things done during the day cause I wake up early but that’s because it take me longer than an average person to get ready. Mornings are sometimes too painful to handle. By the end of the day I’ll be good though.

Recently I keep having flare ups and I can’t help but think it’s got to do with my poor eating habits. I think I eat better than I used to.. got rid of soda, less sugar in general, basically less of everything. But I still do salt, still have sweets, still indulge in my chips as snacks. Right now my skin is constantly itchy, I have rashes and bruises all over my legs and I’m at my wits end trying to resolve this. Sometimes the itchy skin keeps me up at night as it’s very uncomfortable.

I watch lots of documentaries and yes I’m a Google freak and seen gluten is a major cause of inflammation. So today actually I decided to try removing gluten from my diet. No breads, no tortillas, no rice, no pasta. All things I eat almost daily and way too much of. I made myself a nice green juice to try to detox this morning and we’ll see how I do with a gluten free diet for a week. I’d love for people to share their experiences with changing their diet. I’ll post success stories so maybe others can try different options. Doesn’t have to be specifically gluten free but what changes did you make and did they help? I’ll make a page for recipes too cause ya know, sharing is caring. 😉