Below you will be able to read stories of people who live and experience living with an autoimmune disease. These stories show what its like to truly live with the disease. Every day for some is a challenge and others have found ways to get by. Together we can share our stories and thoughts on ways to make it.
WE ARE WARRIORS!
Navigating Life's Journey with Autoimmune Disease: A Personal Perspective
Living with autoimmune disease is a unique and challenging journey that millions of individuals around the world embark on every day. Characterized by the body's immune system attacking its own cells, autoimmune diseases can manifest in various forms, affecting virtually any part of the body. From rheumatoid arthritis and lupus to multiple sclerosis and Crohn's disease, the impact of autoimmune conditions extends far beyond physical symptoms, influencing daily life, emotional well-being, and interpersonal relationships.
The Rollercoaster of Symptoms:
One of the defining features of autoimmune diseases is their unpredictable nature. Symptoms can flare up suddenly, leading to periods of intense discomfort and fatigue. On the other hand, individuals may experience periods of remission, during which the symptoms temporarily subside. This rollercoaster of symptoms can make planning and managing daily activities a constant challenge, requiring flexibility and adaptability.
The Invisible Battle:
While some autoimmune diseases manifest visible symptoms, many individuals grapple with conditions that are often unseen by others. Chronic fatigue, joint pain, and cognitive fog are just a few examples of the hidden struggles faced by those living with autoimmune diseases. Navigating daily life while contending with these invisible battles can be isolating, as others may not fully comprehend the extent of the challenges faced.
Building a Support System:
Living with autoimmune disease emphasizes the importance of cultivating a strong support system. Whether it's family, friends, or a support group, having people who understand and empathize with the struggles can make a significant difference. Sharing experiences, exchanging coping strategies, and receiving emotional support can help individuals facing autoimmune diseases feel less alone in their journey.
Adapting Lifestyle:
Adapting one's lifestyle becomes crucial when living with autoimmune disease. This often involves making dietary changes, managing stress levels, and incorporating regular exercise tailored to individual capabilities. Holistic approaches such as mindfulness, yoga, and alternative therapies are increasingly recognized for their potential in complementing conventional medical treatments.
Medical Management and Treatment:
Managing autoimmune diseases typically involves a combination of medications and therapies designed to alleviate symptoms and prevent the progression of the condition. Regular consultations with healthcare professionals, including rheumatologists, immunologists, and other specialists, are essential to monitor the disease's course and adjust treatment plans accordingly.
Embracing Self-Care:
Self-care takes center stage in the lives of individuals with autoimmune diseases. Prioritizing rest, listening to one's body, and acknowledging personal limitations become crucial components of daily life. Developing a routine that balances activity with periods of rest can help individuals conserve energy and better manage symptoms.
Fostering Resilience:
Living with autoimmune disease demands a considerable amount of resilience. It requires embracing a positive mindset, acknowledging achievements, and celebrating small victories. Cultivating resilience enables individuals to face the uncertainties of their condition with courage and determination, fostering a sense of empowerment in the face of adversity.
Living with autoimmune disease is a complex and ongoing journey, marked by its unique set of challenges and triumphs. Through the highs and lows, individuals facing autoimmune diseases demonstrate incredible strength, resilience, and adaptability. As we strive for greater awareness and understanding, it is essential to recognize and support those on this journey, fostering a more compassionate and inclusive world for all.
Rheumatoid Arthritis has been a challenge for me personally. Life was a go-go-go style movement. Then as my knee continued to swell and the pain was overbearing. I spent over 20 years diagnosed with Gout. Which after repetitive trips to doctors and draining fluid from my knee the damage was done. I had to have surgery on my left knee as the swelling had forced my patellar tendon to almost snap. Off to surgery I went. Years of constant pain and inability to truly return to my old self, I knew there was more to be done. But with work and life I continued to push through.
After a trip to Texas, I walked off the curb and found it was taller than expected. And down I went, body going one way and knee going the other, I found myself in pain again. I continued to the airport to make my flight and had to walk across the airport carrying luggage to my terminal. The walk seemed like forever and the pain only began to grow stronger. As I get to my terminal, I find that we are delayed three hours, which is normally no big deal. I would go and get some food or take a nap. But this time as I sit in a packed airport, I felt the stiffening of my knee. The swelling had begun. I tried to straighten it to walk and found that to be painful and horrible. I knew I was in trouble at that point, but what else could I do but sit there.
Finally, the plane arrived within two hours of sitting there. I was so happy to see them because I needed to get home quickly. As I proceeded to get up and painfully straightened my knee I had to make my way onto the plane. With limited seating and a packed airplane, I found my seat and sat. As the pain and turbulence of the plane continued to drive pain though my knee all I wanted to do was get off this plane and R.I.C.E it. Upon arrival I finally got off the plane only to have to walk a half a mile to the exit. I finally made it after about 20 minutes slow stepping forward. I got into the car and proceeded home.
Once home I knew something wasn’t right. I went to the doctor the next day and they drained my knee again. Only to find no crystals in the fluid. Their concerns began to grow and recommended I go to another specialist. I went to the rheumatologist and there I was diagnosed with Rheumatoid Arthritis. Finally, a reason for my constant swelling of knee, elbow, and ankle. But this was just the beginning of a long ride which I am still going through today.
Some days are great, but some days are bad. The fatigue sets in and feels like your carrying 200 pounds of sandbags on your body holding you down. You try to rest but the pain from your body being bound down just makes the day worse. And when you do get up after a few steps you are completely exhausted. Just going to the rest room is enough for the day. But after time and warm showers your body begins to loosen up some. Not enough to feel yourself, but enough to make it through the day.
You fight to continue because you have responsibilities at home that need to be done. You feel like you can’t do things you once loved to do and begin to fall into a pride issue. You know you can do it but now the fear of what will happen if you try sets in. One little mistake and I know I will end up down for weeks at a time.
This life living with an autoimmune disease has changed my perspective on everything. But I can’t and won’t let it hold me back from enjoying my life. I still have good and bad days but my mindset to move forward is strong. Warm showers and a strong mindset help me focus on living for the next day. Yes, I know that some days will be rough but every day that we are awake is another day to enjoy the day. WE ARE WARRIORS and warriors fight for another day - Jeremy
Well with sad news I found out that my facebook account was disabled for something out of my control. I tried to setup another account and it was disabled immediately. We are working with facebook to fix the issue and will hopefully be back online soon. Lets hope we can regain access to the account and continue to support providing information pertaining our autoimmune challenges.
Today I wake up feeling beaten again. My body aching from head to toe. Exhausted from a full nights sleep. Calling out of work due to the pain and exhaustion. Why do I feel this way? What can I change to make life better? Why does this happen at times when I don't need it to? How can I control it? These are all questions I ask myself when this happens. But today I had a second of no pain and clarity. I dont want to feel this way anymore. I took this moment to roll over in my bed and look at the nightstand. There, sitting was my clock with several medicine bottles. This is not the life I predicted to be living at 44. Not able at times to get up, pain over the body, exhaustion and brain fog. I am not old; I am still so young in life. Average age of living is 85 which means I have over forty more years of this. How can I keep letting this control me? I CANT. I WONT.
Stress and Life
The stress from work and life I am sure is not helping but those things you can change. But it's not as easy as those think to quit your job, quit your responsibilities of life. Stress is a killer of our mind and body. We have to find a happy solution to this, and it will help to relieve one of the things in your life causing your condition to amplify.
Food Nutrition
I am working with a nutritionist to get my food right. Eating an anti-inflammatory diet has helped and I have seen change of my body. My weight slowly coming down while still eating three meals and two snacks a day. I honestly wouldn't believe it if you told me, it would. I am dedicated to eating right and losing the weight. One step at a time, is a step closer to a better life.