‘God, it’s okay if you want to take me tonight.’ I was so frustrated with myself and my disease.’: Lupus warrior says ‘I will never again lose hope’

More Stories like:

“If you are suffering from a chronic illness, you are feeling defeated, perhaps are spending time crying in the shower because you do not want to show your loved ones your tears, then know you are not alone. We all have good days and bad days, but just hold onto the good ones and know there are always going to be even better days around the corner. If you are feeling sorry for yourself, give yourself a minute, and then tell yourself just because you are in this place right now does not mean you have to live there. I have been there, and occasionally I still visit those places, but I will never again lose hope in the ability to persevere.

May is Lupus awareness month, and I struggled with how to bring awareness to this cruel mysterious disease, but I was given this platform to tell my struggle with the disease and autoimmunity. If you find you are at the beginning of your journey trying to get diagnosed or are newly diagnosed, I hope this story will give you hope to manifest a better life for yourself. It may not be easy, but it will be worth it.

lupus butterfly rash
Courtesy of April Orr

I struggled with how to begin this story about this chapter in my life, but I decided to take it from the time that led to my diagnosis. For many individuals, it takes years to be diagnosed, and many times doctors shrug off the symptoms or attribute it to some other illness. For me, it took about a year and a half from the time my joints came into play. I was 31 years old at the time, and my wrists were increasingly stiff and sore. I went to the doctor for advice, and he recommended a wrist splint. He suggested it was probably tendonitis from typing at my full-time office job. I went nearly a month wearing splints on my wrists, and when it did not seem to help, he said I should be seen by an Orthopedic Specialist. I went to see the specialist, who said I had carpal tunnel syndrome, but before he performed the surgery, he wanted to have some blood work checked.

lupus hands in winter
Courtesy of April Orr

At that time, it was to check for vitamin deficiencies. My B12 was low, so he told me to use the supplement for B12, and then follow up. It still did not make a difference. Therefore, surgery was scheduled for my right hand in January 2010 and my left hand in February 2010.  When my right hand was done, the surgeon said the nerves in my hand had been squeezed so tightly for so long they were blue, and he did not know if full function would be restored. In the recovery room, the tips of my fingers on both hands turned white and then blue. Not just on the hand the surgery had been done on. The attending nurse asked if I had Raynaud’s. I was recovering so I was not paying that close attention to what she had called it, and so I just shook my head, and she left the room.

wrist after surgery
Courtesy of April Orr

Fast forward to the second surgery. At this surgery, the nerves were not quite as bad as the right hand, but when I was in the recovery room the nurse (a different nurse from the first surgery) had asked me if I had Raynaud’s. This time I had my husband write it down so I could research it once I felt better.  Recovery was slow, but I tried to remain positive. Before my post-op follow-up, I started noticing my feet and ankles were sore and swollen, and the ankle pain was like the carpal tunnel I experienced in my wrists. I brought my concerns to my Orthopedic Surgeon at my post-op follow-up appointment. His face sunk, he took my hands, and he said he thinks there may be an underlying inflammatory process causing these problems. He consulted with my primary doctor to have further blood drawn.

Raynauds fingers
Courtesy of April Orr

When the blood work had come back, the anti-nuclear antibodies (ANA) were so high they were off the chart. My PCP called to inform me of this and said he was referring me to a Rheumatologist who deals with these types of issues because he was no longer comfortable with this condition. Not going to lie, it was scary. I knew something was wrong, and I was not yet aware of what it specifically was, just it was bad. You know one of those feelings where your heart just sinks into your stomach?

lupus butterfly rash
Courtesy of April Orr

When I had my appointment with the Rheumatologist, she was so understanding and basically said, ‘Let us figure out exactly what we are dealing with, and we will treat it accordingly.’ She asked me questions about my medical history, specifically focusing on if certain symptoms presented themselves so we knew which tests best suited the circumstances. I had previously had a miscarriage, oral ulcers, dry skin, rashes, and had a nose ulcer I had to be seen in the ER for because it caused significant bleeding. I had also on a separate occasion lost consciousness at one point, passing out on my kitchen floor. At the time, they thought it could have been either a drop in blood pressure or an issue with blood sugar, but did not know for sure. I also mentioned my B12 was not being absorbed. All these things COULD have been related to the autoimmune processes. Although at those times, they could also have been associated with different conditions I had, so it could not specifically point to Lupus or any other disease at those times. She also asked about family history with autoimmunity. I had a cousin with Lupus who had passed away, and another with RA, and those were the ones I was aware of.

woman smiling
Courtesy of April Orr

We must always be our own advocates when we are looking for answers to our health questions. We are only given one body. Since we knew it was an autoimmune disease with the elevated ANA, we did tests like the DSDNA (double-stranded DNA), Rheumatoid factor, Lupus anticoagulant, sedimentation rate, metabolic panel, and blood counts, as well as the ANA again. When the tests came back the ANA was elevated, but not as bad as it was the first time it was read. The DSDNA was high, and the Lupus Anticoagulant was positive, and platelet count was high. Clinically, I presented not just Lupus symptoms, but symptoms of other autoimmune diseases as well, but without the lab confirmation of an overlapping autoimmune disease it was considered unspecified.  I was prescribed hydroxychloroquine (Plaquenil), as well as a few other drugs to help with inflammation and pain. Later more and more medications were added, including methotrexate, a chemotherapy drug. After many years on methotrexate, we had to decide to cut the dose in half because my liver was showing signs of toxicity.

family portrait outside
Courtesy of April Orr

As time went on, my organs had become affected by my autoimmune disease. The organs and body systems that are affected by my condition include muscles, bones, skin, nervous system, eyes, nose, mouth, esophagus, heart, lungs, pancreas, kidneys, and liver. Some of these by the condition, and some by the drugs to treat the condition. Sun exposure, dehydration, the cold, heat, activity, and stress all affect this condition. I have been living with this condition for almost 10 years now, so I know the seasonality of the condition. Meaning I understand what normal is for my abnormal body, and how the seasons may affect me. When I was diagnosed, I had an 11-year-old and a 6-year-old. I was working full-time and had just changed jobs after being with a company for nearly 10 years, which means I lost any short-term disability benefits. My husband had been permanently laid off from his job of 10 years because of the poor economy, and a lot of important decisions had to be made.

woman smiling
Courtesy of April Orr

I just wanted to crawl into a hole and die. My morning routine had me up several hours before work so I could get my body to loosen up. The pain so immense at times I just found myself bawling in the shower. When I would go to bed at night there were times I was so exhausted and frustrated with both myself and my disease I said, ‘God, it’s okay if you want to take me tonight.’ I was clearly at my lowest point. With determination, the help of a good therapist, and my family I pulled myself out of that dark hole. I am so thankful God has given me the opportunity to share my journey, and to reach out to help others through theirs.

woman smiling, sunlight coming in
Courtesy of April Orr

From 2014 forward with a lot of work, I have been able to put my health and happiness closer to the top of the list. Although my physical health takes a small step in the wrong direction each year, my mindset approaches it in a more positive way. I went through occupational therapy and physical therapy and had learned where to apply my energy as well as learned when to tell people no. For almost a year, I did not tell anyone I was sick. It is an invisible illness, and I did not want to appear weak or lazy, so I tried to keep up with everyone. After I accepted my diagnosis and let the people closest to me know what I was dealing with, it helped take some of the pressure off me. My children knew if I had to lay down or needed a break it was not their fault. And that was the biggest thing for me. I did not want to take out my anger, frustration, and pain on anyone else because it was not their fault, and it would not have accomplished anything. As a result of this thinking and the work I have put into my well-being, I am still here and watching my children grow into amazing adults.

When I wake up in pain, it is a reminder I am indeed alive. I am an introvert (super shy and do not enjoy being the center of attention), but in 2017 I started a blog. The main purpose was to share inspirational quotes, life hacks, money-saving tips, and a few recipes. It was to both help me and others be inspired, and to simplify and savor their lives. I am also working on a digital product suite. Chronic illness often has a devastating effect on finances with loss of work and medical bills. I know it did for us, so I am creating a few products to help individuals that were like me 10 years ago. None of us know where we will be tomorrow or when the good Lord will call us home, but we will be judged by what we have done with the resources we have been given. We all have the tools to work through whatever struggles we have because it is less about what cross we bear than it is how we carry it.”

Lifetouch

This story was submitted to Love What Matters by April Orr from Wisconsin, USA. You can follow her journey on Instagram, Pinterest, and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this here:

‘After quitting, my boss said, ‘You are so egoistic. I’m 50 and I show up every day. You’re young, you should have energy to do more.’: Woman diagnosed with Epstein-Barr Virus after 4 years details healing journey

‘My doctor said, ‘You’re just a tired mom.’ I was too weak to move from the couch. Breathing became a challenge. I knew he was wrong.’: Mom navigates life with chronic illnesses, ‘Be kind to yourself’

‘There may be days when all you can do is breathe and sleep. Those feelings won’t go away. True healing is messy.’: Woman claims ’embracing pain’ is part of the healing process

‘A diagnosis wouldn’t be worth it. You can’t do anything about it.’ I was angry. No one took me seriously.’: Chronic illness warrior urges ‘my pain is real’

Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.

For our best love stories, subscribe to our free email newsletter: