Granulomatosis with Polyangiitis

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    Jane L Edwards

    This Is My Fatigue From Chronic Illness

    This is my fatigue. Fatigue is a symptom of many diseases. It significantly impacts my condition, vasculitis (granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crushing impact fatigue has on my life. So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team. Hopefully, I can improve on my usual description of “I just don’t feel right.” My fatigue is a mix of physical and mental symptoms. Sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective, and more “believable.” I don’t really understand why I think this way, I just know that I do. My Physical Fatigue Symptoms Physically, I feel heavy, lacking in energy, and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramps in my fingers and toes or restless legs. I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favorite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully. I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry. My Mental Fatigue Symptoms I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others. I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life. I cannot think logically. I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully, those around me are always there to remind me that this is all part of the illness. How Do I Describe My Fatigue to Clinicians? Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits. Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually unable to leave the house at times (except for dog walks). What Helps Me with Fatigue? My family helps me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realize that I must keep positive and “get my fight back” soon. My family helps me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help. As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand. Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood. Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realize that I will be OK, and I hope that I help them in return. An Unexpected Positive From Long COVID-19 I hate to write about positives and COVID-19 as it has been the cruelest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long-term conditions that present with fatigue in similar ways to COVID-19.

    Community Voices

    Another chronic pain diagnosis. #ChronicPain #GranulomatosisWithPolyangiitis

    Anyone here suffering from Granulomatosis with Polyangiitis? I’m newly diagnosed and feeling scared and sad. It’s another diagnosis for me on top of IC, endometriosis and adenomyosis along with depression and anxiety. There’s some relief with a diagnosis after over a year of struggling with “mystery” symptoms but I don’t know if I can handle another #chronicdisease with #ChronicPain . I don’t know how to keep going through all of this. I feel like I am falling apart physically and mentally.

    Community Voices

    My son has to self quarantine because COVID-19 exposure!

    <p>My son has to self quarantine because <a href="https://themighty.com/topic/corona-virus-covid-19/?label=COVID-19" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="COVID-19" title="COVID-19" target="_blank">COVID-19</a> exposure!</p>
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    Community Voices

    waiting very impatiently for my 20 year old to see a rheumatologist that specializes in Vasculitis. ENT started testing her for GPA last week.

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    Community Voices

    When Wegener's Strikes

    2017 began with a bang for my 21-year-old son, Dustin. He has always been an extreme sport participate and oddly had never been hospitalized. He spent the first six months of 2017 with a never-ending sinus problem that caused him breathing problems, and body aches and pains.

    Then July hit, and he woke up with paralyzing pain throughout his body. It began in his knees then moved onto his neck, arms, and shoulders. Since I have #Fibromyalgia, I expected that he did too. Because he kept saying, “it feels like my bones are broken.” Something, I could relate to.

    The pain was so bad that went to the emergency room three times in 10 days. Each time the doctors said that he just needed rest. So he went to see the family doctor. He saw immediately that Dustin was in pain. The first thing he did was a chest x-ray. It showed dual pneumonia. With the help of steroids, he was able to return to work, and he was given several antibiotics.

    He passed out at work a few days later and was sent to the nearest hospital. He stayed there ten days. During that time he had multiple chest x-rays, bronchoscopies, and a lung biopsy. His lungs were bleeding. And as they rinsed the lungs, the blood would come right back. The bleeding was so bad that his heart was having trouble keeping up, so he was put on a heart monitor. He was hooked up to oxygen and given several blood transfusions and iron through an IV. The biopsy showed he had Human Parainfluenza Virus (HPIV). Another test showed that he also had pericarditis.

    He was in the hospital for ten days, and during the last three, they told him he was probably going to die. He had just bought a house, started his dream job, and was having a baby. This wasn’t something any 21-year-old wants to hear. They couldn’t do anything more for him, so they sent him home after ten days. Armed with a load of medications and a binder of his stay, Dustin went home with much uncertainty about his life. He also left with a list full of diagnoses.

    Within a week he’d lost even more color from his face, his chest was tight again, breathing hurt, his pains were back, he couldn’t lift his arms, and he had chills, a fever, and no appetite. Upon follow-up, Dustin was admitted to our local hospital.

    The doctors performed some of the same tests as the former hospital and some new ones. The bleeding was still in his lungs, and so he was being treated for every symptom he had. The steroids made him look like a blowfish. The hospital started taking blood from him several times a day. They were looking for something autoimmune. Several days later the bloodwork came back positive for Wegener’s Disease, also known as, Wegener’s Granulomatosis.  Or more frequently, Granulomatosis with Polyangiitis. Wegener’s is the result of blood vessel inflammation, called “#Vasculitis” and can be seen mostly in the sinuses, lungs, and kidneys.

    So Dustin’s weight loss, fever, fatigue, body aches and pains, persistent runny nose, coughing up of phlegm, and shortness of breath were all due to Wegener’s.  The cause is not known, but the treatment involves chemotherapy medication given intravenously.  The goal is to build up the immune system and to send the disease into remission.

    Wegener’s is treatable, but it is not curable.  If not caught early, Wegener’s will kill you. And sadly, it can affect anyone at any time. Though it’s usually found in people much older than Dustin.

    Dustin will forever be on medication for pain and to build up his immune system so he doesn’t catch what everyone may have. Every six months he has Rituxin treatments once a week for two weeks. And each time he hopes he hopes it will be the last. He looks forward to remission even though he knows that his Wegener’s will never go away. He’ll need treatment for the rest of his life, which is a long time for someone so young.

    References

    Granulomatosis with Polyangiitis. John Hopkins Vasculitis Center. Retrieved from www.hopkinsvasculitis.org/types-vasculitis/granulomatosis-wi....

    Granulomatosis with Polyangiitis. Mayo Clinic. Retrieved from www.mayoclinic.org/diseases-conditions/granulomatosis-with-p....

    Granulomatosis with Polyangiitis (GPA, formerly called Wegener’s). Cleveland Clinic. Retrieved from my.clevelandclinic.org/health/articles/wegeners-granulomatosis.

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    Community Voices
    kels

    Anxiety isn’t real

    For the longest time I didn’t believe that I could have anxiety. I struggled with mental health since 7th grade maybe even before that... but anxiety wasn’t the problem. Not until one day in highschool. It was my sophomore year and all I remember was walking into the wrong classroom which shouldn’t have been that big of a deal. I’ve done it plenty of times before. But that one time triggered my ignored and underlining . This fog began captivating my mind. I couldn’t think clearly and I found myself sitting in the middle of the hall crying because I didn’t know where I was or what I was doing. I just sat there feeling almost as if my brain just shut down. No thoughts coming in or out. Then it went away as if nothing happened. Then flash forward a few years I started college and It got worse. I never told anyone about that whole situation that previously happened in highschool until college. I missed one class and being behind stresses everyone out but for some reason I became extremely worried and panicked since I was now behind. Then one class led to another which led to a whole week and month and to me waking up to go sit in my car and cry because I just drove the Hour to school and I was surprisingly school smart but for some reason I fell. I couldn’t get myself to go to class or to explain to my professor or advisor what was happening. I went home one of those rough days and called my best friend and just bawled my eyes for no reason. I couldn’t breathe. Again, my brain just felt like it was shutting down. No thoughts were coming in or out. I didn’t remember what I was saying. That’s when I knew i needed to seek help. I went from a girl with a 4.2 gpa to a girl who dropped 3 out of her 5 college classes. Not just one semester but both. All because I was to scared to tell someone. So if you are in the same boat. Please tell someone. It will help. I promise #Anxiety #Depression
    #MentalHealth

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    Community Voices
    Mia Nickel

    Parking in a Handicapped Space With Granulomatosis and Polyangiitis

    My mom and I both had some grocery shopping to do on a warm spring afternoon, so I rode along with her to the local supermarket. It’s usually busy, but we were lucky enough to find a handicapped space right up front. As mom reached into her glove compartment to hang up her handicapped placard in the rear view mirror, we heard a rapping at the driver’s side window. A man, maybe 80 or so, was standing there looking peeved.“Do you have something that says you can park here?” the man asked in an accusatory tone. He was wearing a black jacket, jeans and a veteran’s cap — definitely not a police or security officer.“Uh, yes,” my mom answered, pointing to the sign dangling from her mirror. “What business is that of yours?”“There are people here like me who need that space more than you,” he spat.I started shaking and felt a hot anger build up in my neck and face. “She can’t breathe!” I shouted at him from the passenger seat. “She has a disease that affects her breathing and she can’t walk across the whole parking lot! Who do you think you are?” The man looked surprised, then kind of chuckled at me — a woman, five months pregnant and visibly angry, shrieking like a banshee. Mom quietly said to him, “You need to move along,” and rolled up her window.If I hadn’t been so blindsided with anger, I could have told this man exactly why she has every right to park in that space. For 20 years, my mom has been dealing with granulomatosis with polyangiitis (GPA). It only affects about four in every million people. GPA is an inflammatory disease that affects the blood vessels. It can be widespread throughout the body, attacking the lungs, kidneys and nervous system, or it can be limited, which means it “only” causes problems in the upper respiratory tract, the nose and trachea, as well as the eyes and ears. It not only restricts blood flow to the organs it involves, but causes granulomas (firm nodules of extra tissue) to build up as well.My mom is fortunate enough to have the limited type, which is not fatal in and of itself, but can definitely cause some serious problems. She has a 75 percent hearing loss in the left ear, and a 40 percent loss in the right. Hearing aids have helped but her eardrums are prone to rupturing, making the aids uncomfortable to wear and difficult to keep clean. The cartilage in the bridge of her nose has collapsed, giving her the classic “saddled” look. Plastic surgery could fix its appearance, but could trigger a whole host of other issues, so she decided against it years ago.The most troubling aspect of her GPA is it causes nodules to build up on her throat, which, on a good day, is about the circumference of a coffee stir stick. With so little room, the space those nodules take up can quickly become life-threatening, especially during humid weather when the inflammation is worse. She has laser surgery at least once a year to give her trachea some extra breathing room, literally.Still, with all of those problems going on inside of her, my mom does not look anywhere near her actual age of 63. She has few gray hairs, even fewer wrinkles and dresses stylishly. People are shocked to find out she was born during the Truman administration and even more surprised to learn she’s chronically ill. So I guess it’s no surprise this guy reacted the way he did to an attractive, well-dressed blonde lady pulling up and parking in a spot normally reserved for people who “obviously” need it.I haven’t really had a reason to stand up for my mom this way before, but I’m not sorry for how I handled it. In fact, I kind of wish I had more time to set the record straight with him. My mom doesn’t need to explain her disease to people who think you need to look a certain way to qualify for accessibility. That’s not for them to decide. She manages her condition with dignity and grace, and she needs that parking space just as much as someone who has tangible evidence of a disability. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.