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    What's New in Shingles
    Community Voices

    Have been having Shingles outbreaks for the last 2 years…now on my 4th attack. So painful. Wonder if it is connected to Lymes?

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    Community Voices
    Community Voices

    Breaking the cycle

    Part 1 of 2 Growing up as a little girl, I wished for one thing my entire adolescence; a happy family. The kind that doesn’t hit, scream, or demean. The kind of family that doesn’t make you instantly cry as you step off the school bus because you know what hellish nightmare awaits you. I had given up hope at a young age that I would ever attain this dream. The endless cycle of #Abuse was bound to continue. I was certain I wasn’t going to make it to 18 anyway. I had no plan for adulthood, because why plan for something you will never obtain anyway?

    I was wrong. Not only did I end up making it to 18, but I also worked hard on an escape plan. I worked 60 hours a week cleaning vacation homes, mansions, camps, basically any building I could find, because that was all I was qualified to do. Every day while scrubbing toilets I would dream about no longer having to clean 14 houses in 12 hours. I wanted a desk job more than anything. One day, one of my clients took a chance on me and gave me my first office job helping her out at her business. This position led to another job, which eventually got me into healthcare, which I was always interested in. Those years I walked 2 miles to and from work, rarely had anything in the fridge and went some winters without heat, but at least I didn’t have to break my back and hands cleaning houses anymore. I struggled to find myself and still didn’t hold much value to my life. When I was 21 years old, I met a guy. He had the same sick sense of humor as I did, and little did I know, he was battling his own inner demons. The first time we spoke, it felt like I had known him all my life. Still, I told myself there was no way I was going to be in a #Relationships . I just was not wired for that. He similarly had the same thoughts and we decided it was best that way.

    Again, I was dead wrong. Our #Relationships was off before either of us knew what was happening and things moved quickly. In the back of my mind, I asked myself, how I could allow myself to trust someone like this. What was I doing? I’m not supposed to get married or have children. I don’t know how to have a healthy #Relationships , let alone raise another human being. I’m not even remotely equipped, but why can’t I picture myself without him? Why did he have to ruin my eternal plans of solitude where I would never again have to rely on someone else or allow them to let me down? Against my own judgement, I decided to take a chance on him, and myself respectfully. A couple years passed, and we were married. A year later and our daughter was born.

    Finally, for once, I was right. Still, we struggled as young couples do. We were two kids with a lot of #Trauma that was never unpacked and were a recipe for disaster. We also worked opposite shifts for many years so that one of us could be home with our daughter at all times, barely making it mentally and financially. After having our daughter, I was in severe pain constantly and extremely fatigued. I saw many doctors and had so many tests done with no explanation. I was 29 years old when I was finally diagnosed with an autoimmune disease #RheumatoidArthritis . #PsoriaticArthritis followed shortly after that and most recently I have acquired #Lupus . I’ve had about 15 surgeries, hundreds of infusions, injections, staph infections, influenza several times that almost killed me, #Shingles , and countless other ailments. As if that wasn’t enough, my husband has his own health struggles physically and mentally and so does our daughter.

    Throughout all of this, we somehow worked our way up at both of our jobs and on my 34th birthday in 2020 we finally did something wehad been actively trying to do and dreaming for the past decade. We purchased our dream house. It’s been over a year now since we moved in, yet we still find ourselves waking up almost every day and asking each other if this is a dream. How did two, once lost souls get here? Perseverance? Stubbornness? Luck? I’m sure there are plenty of people that wouldn’t’ understand how something as basic as a house and functional family could be considered “making it”, but for us it is everything.

    I’m still not sure how nearly 14 years have gone by since that day two dysfunctional souls met, but I constantly think about how much everything would be different if neither of us took a chance on life. I truly believe we could have easily ended up dead or in prison. Even worse, I’m afraid we even could have repeated our

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    Community Voices
    Community Voices

    Well, That Was a Waste of Time

    <p>Well, That Was a Waste of Time</p>
    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

    Shingles vaccine and fibro

    I suffer from fibro and got my shingles vaccine a few days ago. I know the side effects can make many feel lousy with flu-like symptoms and fever, but do you think it’s possible it feels worse for us with fibro? I am feeling terrible to Igor now.

    3 people are talking about this
    Community Voices

    Saying Hello...

    Hey! My name is Mandy. I am 49 years old. I have post herpetic neuralgia (PHN) from an internal shingles outbreak over 7 years ago. (I did have a small rash but nothing equal to the pain.) I have lived with severe chronic nerve pain ever since all over my left side, front & back and top to bottom. The medicine, the medical world on top of my own emotions and just total loss has been crazy!
    I am so thankful to still be here and that I have some familial sulport. I am starting to find ways to combat the anxiety and depression that i denied for so long. I've also been denied disability so many times. I've tried to work 3 separate just about 2 year intervals. Still, even with medicine additions, everything I do, I pay for in pain. I will not give up though! It takes all I can to take care of my basic needs but I am thankful for even just that. I spent almost 2 years totally bedridden. I now live in a camper on my dad's land. I am now able to go spend the night at my daughter's house and spend time with my grandson occasionally. I have been able to work on the artwork I so love & it has been therapy for me.
    And though these things are enjoyed VERY sparingly due to this monster pain, these things bring me great joy. They make me smile just thinking about it. I do want to do more as i feel my contribution to life is so minimal but i push those thoughts away & try to make the time i do get special.
    I have followed The Mighty for several years now. I have written so much in my journals for all of these years and have never shared it ni feel like its time and this is the place. #PHN #post Herpetic Neuralgia #chronic pain #chronic nerve pain

    2 people are talking about this
    Marion Liszkowski

    Advocating for Myself in the Workplace With Rheumatoid Arthritis

    When I was diagnosed with rheumatoid arthritis over 20 years ago, I was told I was lucky because they caught it early. After suffering for months with swollen joints and extreme fatigue, I was excited to think that my life would go back to “normal.” I was very wrong. Not long after my diagnosis, I got my dream job. It was advertised as having flexible hours and the ability to work independently. But what I didn’t know was that my new boss lived for work, had boundless energy, and expected that from her team. Self-care was not in her vocabulary. The schedule was odd too. We were expected to be in the office at 9 a.m. and were “allowed” to take time off during the afternoons “if” we had a night meeting in the field. We had three to four of those meetings a week, often lasting until 9 p.m. Working full-time was an extreme challenge. Everything I read told me not to disclose my illness, that it could make supervisors question my abilities, prevent promotions, and just make people feel uncomfortable. I felt I was keeping this big secret about myself. Yet, I didn’t realize the extra energy I needed to act like everyone else. I didn’t resent it either, I just put on my mask in order to be accepted. I pretended to my boss, my colleagues, and myself that I was the same person I was before my diagnosis. I worked as hard as ever and said nothing about my personal struggle. It took me an hour each morning to loosen fingers before I could hold a pen. My swollen feet now fit shoes two sizes larger than before. I was in pain, scared, and exhausted. It was a constant fog of fatigue. None of my colleagues knew that it took every ounce of energy to produce at work and pretend I was fine. I had nothing left for my personal life. After a year, I had become so frustrated that I told my boss about my RA. I explained how stress and extended work hours exhausted me and made me more vulnerable to flare-ups. She looked at me as though I was speaking a foreign language! She suggested I might take a nap before my evening meeting and get more rest on the weekends! I could have tried to go to Human Resources for help and support, but I had already heard how notoriously unhelpful they were to others, so I didn’t want to chance it. Over time, I continued to try to advocate for myself, suggesting working one day a week from home. That idea was met with “how can I know you’re really working”? I also asked if I could come in later in the day after an evening meeting, again the answer was “people will think you’re taking advantage”! After a few years of this, my body had enough. I contracted shingles, was put on short-term disability, and told not to work for six weeks. As my body recovered, I slept often and journaled about what I wanted in life and a job. I realized that I hadn’t felt restored and calm since I began this position! I was blaming myself that I wasn’t like “healthy” people. Fortunately, I came to understand that I was in a toxic environment that did not recognize the needs of the employees. Most managers valued employee productivity over the employee. Since my boss put work above everything else, she couldn’t and wouldn’t empathize with anyone struggling. She didn’t advocate for herself, therefore she had no idea how to advocate for me. I started reaching out to friends I knew that had other chronic illnesses. Even though they didn’t have rheumatoid arthritis, they could relate to the fear and isolation that come with chronic illness. We keep our struggles to ourselves for many reasons and feel like we don’t fit in. But, after connecting with those who shared my challenges, I finally felt validated, encouraged, and understood. I found I didn’t appreciate all the positive qualities I have, and had forgotten that I was really good at my job! I had so many skills I could share with an organization, and had a unique experience that no one else had. I was a valuable asset that any employer should feel grateful for. Finally, I felt confident enough to submit my resignation. I had tried everything I could to educate my boss on my needs and see me as an individual. I put myself first and many people there could not relate to it. Thankfully, I was able to find a job and supervisor that appreciated me as an individual. I have never regretted it. I’m not saying that every job I have had since has given me all that I needed. But I learned that staying connected to others who can empathize, accepting my resilient body, and not taking responsibility for others’ ableism helps me to live the life I want. I now know my worth and appreciate what I need from an employer. It’s still a struggle since ableism is so strong in many work environments. But I will no longer accept less than I deserve. I am learning to be my own advocate and I hope by sharing my experience and my truth, I can advocate for others.

    Community Voices

    I started this group to reach out to others w/ multiple health challenges like myself, so we would have a place to empathize and support each other

    <p>I started this group to reach out to others w/ multiple health challenges like myself, so we would have a place to empathize and support each other</p>
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