Living & Loving with Lupus

This post has been a long time coming. I receive about 30-40 Instagram messages each week from women who have questions about my Lupus journey. Women from all walks of life reach out to me after they have been diagnosed with Lupus; women who are scared, confused and feeling in the dark. I try to offer words of encouragement and support- but I know that fighting an often invisible illness is hard even when you receive the best level of support and well wishes.

My Lupus journey has been relatively short. I was only diagnosed a short time ago and even then I received multiple opinions from doctors who were not 100% sure I had it. It was not until I tested positive on a ANA panel that it was confirmed that I had Lupus. During that time in my life I was literally sleep walking. I was in immense pain ALL OF THE TIME, pain that was truly indescribable. I remember not being able to get up and walk in the morning, my joints and muscles swollen and stiff. I was confused and most importantly scared about what the hell was wrong with me. Stress seemed to always make my pain worse, but my pain in itself caused stress so I could not avoid it. My hands and arms often broke out in sores that I thought were hives- little did I know they were rashes. My brain felt foggy all of the time. I was always exhausted and could never remember anything. I literally felt like a 24 year old living in a 98 year old body. I didn't know anybody who had Lupus, I did not even really know what it was.

When I was first diagnosed, I didn't know how to manage my stress levels and I never listened to my body. When I felt tired, I kept going until I broke down. When I was sick, I would go to the ER just so they could pump me full of pain killers that would make me feel even more groggy then I felt. During the times I was in the most pain, I was taking anywhere from 4-7 Vicodin a day. Kidney issues seemed to always be the bulk of my issues and I was always taking antibiotic medication for kidney infections and UTI's. Antibiotics mixed with pain killers caused even worse symptoms then I felt and my skin broke out in horrible acne like sores and I felt so ashamed with the way I looked which resulted in more stress, more depression and consequently more flare-ups.

I thought I would answer some of the questions I see a lot about Lupus here on my blog. Please remember that I can only speak from MY experience, not anybody else's. Lupus affects everyone differently and it is not a one size fits all disease.

Question: What is Lupus?

Answer: Lupus is an autoimmune disease that most commonly affects women between the ages of 17-30 although it can affect men as well. Lupus can affect any organ in the body and can cause a wide range of symptoms that vary from person to person. Medically speaking, Lupus is categorized as an autoimmune disease because your immune system mistakes your own natural tissues and organs as foreign invaders (like illness) and attacks them causing extremely painful symptoms that are called Flares.

Question: What are the biggest symptoms of Lupus?

Answer: Lupus can affect any organ in your body and often shows itself differently in those that suffer from it. Commonly, people who suffer from Lupus can experience rashes and skin lesions, inflamed muscles and joints, issues with the heart, lungs, kidneys and brain. Lupus causes extreme fatigue that is more than just being tired and cannot be "cured" by just getting sleep. Depression is also very common in those that suffer from Lupus.

Question: How do you know if you have Lupus?

Answer: Lupus testing is very complex and sadly many of the people who suffer go without a proper diagnosis for a long time. Because the symptoms of Lupus can be understood as being symptoms of other illnesses, doctors often misdiagnose patients, prescribing multiple medications that often make the illness worse. Most of the time, a ANA blood test is used as a tool to diagnose Lupus, however the effectiveness of the ANA test can vary. If you are facing symptoms of Lupus, it is important for you to connect with your doctor and be extremely firm about your symptoms of the disease. Discuss all of your symptoms and be extremely cautious when trying new medications as they can often make the symptoms worse.

Question: Can Lupus be treated and managed?

Answer: For people who have Lupus, periods of active symptoms are called Flares. Flare-ups are marked by an onset of symptoms that can include pain, fever, inflamed rashes, joint and muscle pain or illness. Sometimes the onset of a flare-up can be slow whereas other times, a flare-up can occur very suddenly, making the symptoms extremely hard to manage. With proper diagnosis and monitoring, doctors usually prescribe a variety of medications that can help to treat the most common symptoms of Lupus including joint pain, inflammation and stress. Although their is no direct cure for Lupus, many people are able to manage their symptoms and Flares by staying mindful about the triggers that often cause Flares. Periods of inactive Flares are called states of remission. Staying well rested, stress free, eating healthy, avoiding common illnesses (colds, flu) are all steps that assist in keeping the disease in control.

Question: Can you have a healthy pregnancy if you have Lupus?

Answer: Yes, Lupus is not a death sentence. Most doctors will recommend that you get pregnant during times of remission or when your symptoms have been in remission for at least 6 months prior, but its not impossible even if they are not. Pregnancy symptoms can make even the most healthy women miserable, so its really important to monitor your flare-up's extremely well during your pregnancy. Early miscarriage is common for women who suffer from Lupus so being mindful of that risk is also extremely important. During my pregnancy, I was relatively healthy until about 7 months. At the 7 month mark, I started going through Lupus Flares and was hospitalized for several days due to kidney complications. In the end, I was blessed with an extremely healthy baby girl who was born at 36 weeks!

Question: You look so healthy and "fine," How can you have a disease?

Answer: Lupus affects everyone differently. There is no "look" that people with Lupus have. People who suffer from chronic pain are more common than people realize. Just because someone appears physically well doesn't mean they are. For people with Lupus, dealing with the perceptions of others is often the hardest part. When interacting with someone who has Lupus, please remember that just because you may not be able to see their illness doesn't mean they are not in pain.

REAL TALK

Grant yourself grace when you are not feeling 100% well and do not be afraid to turn down things when you need to prioritize self care. I am not an expert on Lupus. It was not until about 10 months ago that I actively started monitoring my disease and staying mindful about my health. Going through chronic pain can be extremely isolating and depressing, so it is so important to educate people who support you and your illness. There are so many events, deadlines and opportunities that I have missed because I was in pain and just could not manage it. There have been times where my husband has had to miss events and opportunities just to make sure that I am being taken care of when I need it the most. My son recently has started to understand my disease, and I try to stay incredibly transparent with him when I am not feeling well.

I can finally say that I am in a place of feeling empowered by my Lupus, not powerless. When I am not well, I will openly admit it. I actively manage my depression and flare-ups with medication that works well for ME. When I fuck up in managing my health and stress levels, I grant myself grace and understanding and pick up where I left off. I am so truly blessed that my flare-up's have been well and in remission for the last 3 months. My husband is amazing at noticing when I am not myself and is often more aware of my flare-ups than I am. I thank God everyday for his support and commitment to me and my health.

I truly hope in the next year that I am able to connect with others who suffer from Lupus. I love following inspiring ladies like IndianRose (Instagram name) because I find that her strength and unfiltered realness is the inspiration I need to keep going even when I feel like I can't. There is so many misconceptions about Lupus and truly not enough awareness on the disease. I think educating people on the disease is so important and I hope I can be a voice in that platform.

XOXO

Niekiha

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