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    What's New in Vasculitis
    Community Voices
    Tessa Koller

    How I Feel When My Health Condition Becomes Visible

    In my experience, there is nothing worse than a medical condition you’ve felt terrible about suddenly becoming visible and there is no denying that you have it. Over the years, I’ve grown to love every square inch of my health and self, but these health conditions I endure put my many beliefs to the test. Now that it’s summertime, I’ve been unbelievably self-conscious about my appearance. About a month ago, after having gone through months of long-haul COVID, I was then diagnosed with Behcet’s disease, an autoimmune form of vasculitis. It’s disheartening and painful, and when I’m in a flareup, the world is dead to me and vice versa. During these flare-up periods, I have the tendency to feel like my health is my worst enemy. If you also have many diseases, such as heart and lung disease and autoimmune diseases, then you can probably empathize with me when I say that I feel like my symptoms and conditions have an agenda: to keep me down emotionally and physically and wreak utter havoc in all aspects of my life and world. I’ve had this paralyzing thought while I was running around Croatia and Paris in recent weeks and struggling to enjoy myself despite not being at my healthiest levels of energy and strength. I’d had another arrangement planned for those trips that didn’t pan out the way I’d hoped or had initially wanted. And I knew all my health struggles in the previous few months caused this colossal turn of events I couldn’t have anticipated. Though everything went well and my work and vacations were major successes, my heart was somewhat dinged and shattered. My health had, yet again, affected and changed the course of something it shouldn’t have. This has been a recurring problem for me. Good things will happen in my life but last only a short time. Then, I’ll get another diagnosis of some condition or disease and I won’t be able to lie or hide its impact. Not only do my health issues affect me physically, but they also cause turbulence in my personal life as well. When I was in Croatia, I had to do a lot of work at a scientific medical conference for those with the rare disorder, 22Q11.2 deletion syndrome or DiGeorge syndrome. All the while, I was taking an antibiotic to resolve the uncomfortable stomach discomfort I was having and I’d developed a severe reaction to it, as I do with most antibiotics. I broke out into hives, but already had a small rash from the vasculitis and was beside myself about how I looked or thought I looked. My mom and everyone around me kept saying that I looked fine and it was all in my head. Your family and friends will want to uplift you and tell you what you want to hear, but I know when I don’t look my best. Throughout most of the conference, I wore light khaki-colored pants though it was 90 degrees outside. I stayed in the cold air-conditioned hotel most of the time when I could and avoided baring my arms and legs. Feeling like I have to hide parts of myself goes against my belief systems about body positivity and body shaming. But, these health conditions make it difficult to expose to others my flaws and insecurities while trying to make everyone else believe I’m totally fine about how I look and feel (but am far from fine about those things). I’m comfortable wearing pants regardless of how hot it is outside. I don’t need everyone I encounter asking me if I’m OK and healthy when I am but don’t quite look the part. It dawned on me that diseases, visible or not, aren’t flaws or something we should feel insecure about, but I do and it takes a lot for me to restructure these thoughts in my mind. When a disease becomes visible, it becomes more real and harder to live with. I’ve found some creative healing solutions now for dealing with the discomfort and making this disease less visible and impactful. What I really need to focus on is my mind and thoughts about my body and appearance. I know, deep down, that my health is not the enemy; it’s just something I live with and have come to embrace through my art and work.

    Jane L Edwards

    Lessons Learned in 10 Years of Living With Chronic Illness

    Ten long years. 10 years of hoping I will improve. 10 years of taking serious medications with serious side effects. 10 years and somehow, I don’t feel I have progressed physically. I haven’t gotten “better,” but I am better at managing my condition and my life. It all started with a toothache and a tiredness that sleep could not cure. The removal of all my wisdom teeth, three rounds of antibiotics, and numerous visits to the dentist later, and I heard the words that I will never forget: “Something is wrong, and you need to urgently see your doctor.” Thanks to my fab dentist (who I’m still with now), that is what I did. But getting a correct diagnosis is not always as simple as seeing your doctor for some tests. And so, several weeks of visiting my GP and having blood tests led to an emergency stay for two weeks in the hospital. Then countless doctors and endless tests later, and I received a diagnosis: microscopic polyangiitis, but I was then later diagnosed with Wegener’s vasculitis. It wasn’t the outcome I had expected, but what was happening to me was still not clear. When one doctor questioned my symptoms and another doctor proved me right, I learned valuable lessons. Ultimately, you must look out for yourself and find experts you can trust. I have learned a lot in 10 years, and maybe I have progressed more than I think. I have a team that I trust, I have some stability with my health, and I have family and friends who understand that sometimes, my illness is too much for me, and I need to hide away. But overall, I have a new life — one that wasn’t planned and one that is restricted in some ways. However, it is a life filled with love and respect. The new version of my life is quite lovely, so I think I will keep it — medications and all. It’s called “chronic illness” for a reason. After my diagnosis, I thought I could battle through. I thought I would win. I thought I was invincible. Unfortunately, I couldn’t win, and I was so far from invincible. 10 years on, I am still battling and visiting hospitals monthly, but I am also still hopeful. I did not understand the words “chronic illness.” When a colleague asked me how I was managing, and I said my illness was still dragging on, his response floored me. He simply said, “Well, it is chronic.” It was such a straightforward comment, but it really hit home. Did I think my illness would just go away? Had I not believed that it would stay with me for the rest of my life? Had I just ignored reality? Am I still ignoring it? I try to forget that I have a severe illness. I try to “prove it wrong,” almost as though if I keep going, somebody will soon tell me it was all a joke and that I am OK. The COVID-19 pandemic changed my life. The last few years have been tough for us all. The COVID-19 pandemic changed many things. For me, it felt like a strange clinical trial — I got to remove all the travel and interactions with people and see what happens to an immunosuppressed person with an autoimmune disease. The lack of infections allowed me to drop my medication dose. It also allowed me to work alongside colleagues as equals and not as the only one who was not physically in the room. The pandemic meant I had the energy to be with my family. The world became as restricted as I have been, and it leveled the playing field. Not anymore, though. As the world becomes “normal” again, I become “abnormal” again, and the pressure to join in returns. I have had a number of common infections, and so my medication dose went back up. The large “clinical trial” that has been my life during COVID-19 has given me resounding answers to some of my problems. But solving these problems is not financially straightforward in the real world. Thank you for all the support. The past 10 years have been tough — full of knockouts and disappointment. But they have also been full of laughter, love, and special people. My family has been amazing. Even if we do lots of shouting some days, when it matters, we are a tight unit, and we deal with everything together. My family members are my strength, and I wish I could repay all the support, love, and kindness they have shown me. To the friends who came to the hospital with me or looked after the girls for me when they were little, thank you. To those who have listened to me cry even if it did not make much sense, thank you. My online friends deserve a “thank you” too. Since writing the book, the support from Instagram, Facebook and Twitter has been critical. Online friends, you may understand me. You are often awake at the same time as I am when I cannot sleep, and you may also know how scary and uncertain this disease can be. Thank you. To my boss and colleagues, thank you for all the encouragement and support, positive words, and understanding when I just couldn’t be in the room. You have been the most fantastic company for the last 10 years. George, the black Labrador and Burt, the cocker spaniel have helped me too. George and Burt, you will never know how much you have kept me moving. The movement has helped me avoid diabetes, brittle bones, weight struggles, and depression. Our walks help me both physically and mentally. This is what the future holds. Unfortunately, the medication that has given me some stability has now caused the doctors to think it has brought on ulcerative colitis, another autoimmune disease. This disease affects my bowel and brings more inflammation, more new investigations, more new medications, and yet another thing to learn to live with every day. But I will manage. The past 10 years of medications have caused osteoporosis in my back and hip, medication dependency, and weight changes. The fatigue is constant, and when I get to the end of a working day, I am lucky if I can speak to my family. I keep going, though. I am proud of how my family and I have all dealt with this life-changing diagnosis. I am proud of our resilience and ability to fight. I am also proud of how my children view this world with kindness, and I know that they will make a real difference as they turn into extraordinary young ladies. Vasculitis forced me to step back, look at my world, and focus my energy on the things that really matter. For now, I celebrate being alive, and I thank everyone who has helped me stay that way. It was not so long ago that a diagnosis of vasculitis was an immediate death sentence. I am grateful for the clinical advances and the care I have been given. Now can someone please invent a cure?

    Tessa Koller

    Long-Haul COVID-19 and Receiving a Behcet's Disease Diagnosis

    After months of illness, physical pain, and inability to do everyday activities without health interruptions, I thought long-haul COVID-19would be my only struggle, and I’d overcome it. I was eager to get back to my life — running my little sewing business and doing the artwork I love. Back in August 2021, only four months post-vaccination, I contracted the Delta variant of COVID-19, and my symptoms were between moderate and severe but leaning closer to severe. I’d spent my two weeks with the virus and then noticed most of the symptoms didn’t resolve — the headaches, nausea, and chest pain when coughing, along with a host of other symptoms. Long-haul COVID-19 sent me to the emergency room numerous times with breathing issues, digestive distress, and other debilitating symptoms nobody could explain. The only information I knew for certain was that this was long-haul COVID-19 wreaking its havoc on every cell in my body. In the last three weeks, my health took another turn. A strange set of symptomatology that all seemed unrelated began having its way with me. From a strange metallic taste in my mouth to unusual chest pains, it felt as though I’d caught COVID-19 yet again. At first, some symptoms presented as fibromyalgia, but the pain felt deeply rooted in my bones, joints, tendons, and tissues. For about five days and nights, I was experiencing so much physical pain and agony that I couldn’t lie down on any part of my body. It hurt too much to sit, stand, and lie down on my stomach and back, and I found myself sitting on the floor of my bedroom sobbing myself to sleep or even not sleeping at all. Other symptoms, more personal ones I won’t be listing here, really put me through the wringer, and frequent hospital visits were causing me an undeniable amount of stress and anxiety. One symptom specifically led a nurse practitioner to believe that this was a Behcet’s disease autoimmune flare-up I was experiencing. It was like a funnel cloud had formed above my head and dropped right on top of me, upending everything in my life. In case you’re unfamiliar with Behcet’s disease, it’s a rare condition that is similar to vasculitis. The autoimmune disease had already spent months attacking my digestive system, immune system, lymphatic system, and many other bodily systems too. For about three weeks, I’ve been in the middle of an autoimmune flare-up that has been testing me to an extreme degree. To boot, I found out I have not one, but three bacterial infections that have all been utterly distressing. Still, I am relieved knowing this won’t be a forever situation, and it’s treatable and temporary. Perhaps I’m stronger than I give myself credit for, but the despair I felt in learning that I have Behcet’s disease has affected me on so many levels that words can’t express. There is no way for me to properly articulate what I’ve been going through with this disease. I’m still learning about Behcet’s disease, but I found myself undeniably angry that my lengthy battle with long-haul COVID-19 has led to it. The toll this autoimmune disease has taken on my mental and emotional health and well-being is irrefutable. On a better note, though, I’ve heard many positive things about this condition, including that people have been able to successfully tame Behcet’s almost to the point of full remission or to experiencing less frequent flare-ups. I’ve adopted a new way of eating and managing my health and lifestyle and am trying to be patient with my healing process. Being immunocompromised has made me realize how complex the immune system is in its reactions and responses to vaccines and diseases too. When I found out that Behcet’s disease is the mysterious autoimmune condition that was causing me so much trouble for all of these months, I didn’t want to accept or talk about it. However, our health is a part of us — whether we like or accept it or not. Our health isn’t the enemy — it can help us find new ways of living that may benefit us even more. It’s important to find resources that help you work with the sadness and grief a diagnosis like this can cause and be patient with the healing process. I’m utilizing the tools within me to move through this autoimmune flare-up: meditation, nutrition, a holistic approach to treatments, and of course, my art (when my energy allows it). Though I’m not happy about my Behcet’s disease diagnosis, I am hopeful about getting on a new path toward wellness that nourishes and enriches my health and life in the long term.

    Community Voices

    Feeling down and depresses

    I am feeling somewhat down and depressed plus anxious. I joined The Mighty a few days ago and I'm just now feeling more comfortable telling my story. In 2006 i was diagnosed with Leukocytoclastic vasculitis. I had purpura all over both legs and it was very painful. It took a few months but I recovered and was relatively healthy for several years. Then as soon as I hit 40 it was like my health fell off a cliff. I was extremely tired all the time, depressed, and had night sweats. My doctor repeatedly checked my hormone and thyroid levels but they kept coming back "normal". Then I went to an ENT to get my ears cleaned. During the exam he felt my throat and said my thyroid was enlarged. I had an ultrasound and my thyroid levels checked, again. Finally I was out of range and I started synthroid. I noticed over the next few months my symptoms got worse and my neck was getting bigger. I had another ultrasound and talked my doctor into increasing my dose. The ultrasound showed I had nodules on my thyroid so he sent me to a pathologist who I well known around me for only testing the thyroid. I had a fine needle biopsy which came back benign. However, he said he could tell by looking at my thyroid I had hashimotos and sent a note to my doctor to test my TPO. It came back way, way out of range at over 800. My doctor said I had hashimotos in the past. By this point though I had been doing my own research and new that wasn't correct. Plus I went to an endocrinologist who was concerned I not only had hashimotos but graves disease too given how large my thyroid was. The graves test came back inconclusive. Meanwhile, I was on a hormone rollercoaster plus I developed shingles. I wound up in the hospital a few times and was taken seriously once till shift change where the new doctor brushed me off and sent me home. My primary care doctor was not happy the hospital brushed me off because I had chest pain. I saw a cardiologist a few times, was taken off synthroid then back on because my thyroid levels were all over the place, then after about 6 months everything calmed down and I was stable. I ended up changing primary care doctors since I couldn't get the old doctor to believe I had hashimotos plus he wouldn't check my iron levels. The new doctor checked my iron at my first appointment and found my ferritin level was very low but never tried to figure out why. Fast forward a couple of years and I start having severe pelvic pain. After seeing 6 doctors in the span of 2 months I finally get diagnosed with adenomyosis and fibroids. Nothing was helping with the pain and I had a total hysterectomy only keeping my ovaries. I woke up from surgery and the pain I had been in daily for several months was gone. Then about 7 months later the thyroid pathologist told me my thyroid was getting so enlarged I should see a surgeon about getting it removed. The same week I severely sprained my ankle and lost my insurance. Two months later with new insurance and still dealing with the sprained ankle I went to a pain management specialist and he sent me the physical therapy. By this point it was December so the holidays interfered with starting therapy and my Achilles tendon quit working and I was on crutches. Meanwhile, I couldn't work because I worked in catering and had a heck of a time getting on disability. I ended up having to quit my 2nd job because I just couldn't walk and be on my feet as long as that job required. Over the next 6 months I faithfully went to therapy and doctor appointments. I wound up in a walking cast at one point, sprained my ankle again, and had the big toe on the same foot sprained after someone walked right into me and stepped very hard on my foot. This caused me to go on workers compensation because it happened at work. Meanwhile at the same time my landlord decided he didn't want to renew my lease so I had to fight him in court and look for a new apartment. Oh and my insurance decided I had enough physical therapy so they cut me off. This brings us to January 2020. My whole family got sick in January with what we now know was covid, we didn't then. While I was still recovering we moved. I was able to return the physical therapy for a brief period till lockdown in March. I had a few virtual appointments then I was discharged about a month later. In September I went to a new endocrinologist and she looked at my records, ordered a new ultrasound. She confirmed my thyroid was way to large to even figure out what was thyroid tissue and what was nodules. She sent me to a surgeon who immediately scheduled me for surgery for a total thyroidectomy. I recovered from that, my anxiety spiraled way out of control and my husband took me to the emergency room one day. That got me into the counseling and with a psychiatrist right away and I'm on medication. With my anxiety getting under control of course something else had to start. In October I started having what I think are vasculitis flares. I tell my doctor who prescribed gabapentin and also started me on a statin due to high cholesterol because genetics. I am allergic to dairy, have gluten intolerance and overall already eat fairly healthy. So I started both new medications and immediately break out in hives over Thanksgiving. I stop both new medications and the hives don't go away. So after 2 rounds of prednisone they finally go away. The doctor wanted to wait a few months before trying anything new again. Meanwhile, the pain my legs gets worse but mostly tolerable. Then one day in February I'm doing normal housework and halfway through the day I am in so much pain I can't walk. I'm laid up in bed for a week. I make an appointment with a rheumatologist who I saw last week. He was really thorough, nice, and clearly explained his thoughts. He doesn't think it's the vasculitis flaring up and runs A LOT of tests, 12 vials of blood and a cup of urine. He briefly mentioned fibromyalgia. When I Google fibromyalgia I do check a lot of boxes for it. He said expected all the test results to come back negative but they didn't. I did what I know you're not suppose to do but I Googled the test results that came back out of range and the only things I can speculate is maybe I do have fibromyalgia, the vasculitis is flaring, and I may have a mild case of a hereditary blood disorder that is in my family, my dad had it and several cousins have it. It's spherocytosis. The only reason I speculate on the fibromyalgia is the soles on my feet really hurt and that does not go with vasculitis. I'm currently learning that I can't push myself or I over do it and wind up in a lot of pain. My feet constantly throb. I am starting to pace myself. I see the rheumatologist the first week of May to go over the test results. So that's my story, sorry it's long.

    #Anxiety #hashimotos #Hypothyroid #Adenomyosis #Hysterectomy #HighCholesterol #Undiagnosed #Fibromyalgia #LeukocytoclasticVasculitis #ChronicPain #MultipleDisabilities #Spherocytosis #ChronicPain

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    Community Voices

    New here

    Hi I'm new here and new to Mighty. I've been having increasing pain the last 6 months. I thought 6 months ago the pain was related to my Vasculitis (which I was diagnosed with in 2006) but in February the pain moved into my feet. It was at that point I decided I needed to see a specialist. So made an appointment with a rheumatologist who I saw last week. He was very thorough, went through my entire medical history down to why I tend to easily sprain my ankle. I feel like he really listened and communicated his thoughts. He doesn't think my pain is Vasculitis. He did ask my if anyone ever mentioned fibroya to me which is no. And he ran a lot of blood tests, 12 vials of blood worth. I've been getting the test results in the chart app. He said he expected all the test results to be negative but they aren't. So now I'm just in waiting mode till my next appointment in early May. I'm trying so hard to not Google my symptoms or what the test results mean. Tylenol and Advil not really help the pain at all. I try not to overdo it on my good days and just pace myself. I read today about setting alarms in 30 minute increments to work for 30 minutes then rest for 30 minutes. I'm don't have a job because of severe anxiety that I'm on medication for and in counseling. The throbbed pain is so distracting and exhausting. Anyway, thanks for listening.


    Community Voices

    I jist would like for someone to tell me if I should be worried that I will have or have ms. T2-weighted and FLAIR imaging demonstrating scattered punctate/minute areas of increased signal, bilateral frontal white matter. Nonspecific somewhat conspicuous for the patient's age. Minute areas of ischemic change and/or gliosis. Residual from migraine/vasculitis, postinfectious findings or a demyelinating process. Although this does not demonstrate the classic flame shaped perpendicular orientation of lesions to the lateral ventricles for multiple sclerosis, the latter cannot be entirely excluded.

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    Community Voices


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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

    When will it stop … #rheumatoid arthritis #sjogren syndrom # SV vasculitis

    40 years + when will it stop
    The pain, the flares, the helplessness,
    When will it just stop
    I cannot fight anymore
    I’m becoming so weak

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