Autoimmune Immunodeficiency

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    Community Voices

    Does chemo trigger your anxiety and/or depression?

    <p>Does chemo trigger your <a href="https://themighty.com/topic/anxiety/?label=anxiety" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5f00553f33fe98d1b4" data-name="anxiety" title="anxiety" target="_blank">anxiety</a> and/or <a href="https://themighty.com/topic/depression/?label=depression" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7600553f33fe991123" data-name="depression" title="depression" target="_blank">depression</a>?</p>
    2 people are talking about this
    Community Voices

    Let us never overlook the importance of this & every future Memorial Day

    Friends & Sufferers, let us never overlook or understate the importance of this special day. While it’s easy to be consumed by the hustle & bustle of daily life, may we all find the strength to consider the incredible sacrifice made by those who fought to defend our peoples’ right to individual & collective freedom.
    -
    #AutoimmuneImmunodeficiency #CheckInWithMe

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    3 Things to Know About Those at High Risk for Severe COVID-19

    As I lay in the hospital, I listen to the clicking and beeping of the IV machines and monitors, waiting for my round of medications for the day to begin. I stare at the nurses bustling away. Their voices muffled under their masks as the fluorescent lights from above reflect off their face shields. I am reminded that this month marks one year since COVID-19 pushed its way into our lives. When I think back to a year ago, I remember my small businesses being forced to close, my children’s schools closing and the grocery store chaos. “Where’s the toilet paper!” I remember the confusing and ever-changing messaging from the government and the fear of what all of this meant for our futures. It was about a week later that I was sick with the usual sore throat, fever, congestion, and trouble breathing that had become part of my life, off and on for so many years.  Getting sick is a rather common occurrence for me as someone who is immune-suppressed and prone to chronic infections. In fact, wearing masks was something I had been doing during cold and flu season long before COVID-19. However, my infection last March was even more concerning because now I worried that maybe this cold was the newly revealed COVID-19 virus. I was quite scared thinking about the possibility of what that could mean for me and my family, including my spouse and children. I have been hospitalized before for serious infections and sepsis from simple colds and flu. I know how bad my body is at fighting back against viruses. Getting sick was always a scary ordeal for me, but the fear of COVID-19 left me with far more worry than the usual infection. I spent weeks trying to get tested in those last days of March 2020 and remember clearly the relentless feeling of being completely marooned. It didn’t matter that I was someone with multiple co-morbidities, that I was someone on immune-suppressing medication, that my doctor wanted me tested or even that I had a history of breathing issues. The criteria for testing in my community at that time was only available to those who had been out of the country or had been in contact with someone with a known COVID-19 diagnosis. After repeated calls and persistent attempts to enlist help, I was finally told that there was going to be some mass mobile testing coming in the next week. It took another week before I could get an appointment. Even though I felt absolutely awful, I was pretty sure it wasn’t COVID-19 because quite simply, I was still alive. Nonetheless, I was pretty sick and I needed an answer. When I was finally able to get tested, I had to drive over an hour to a testing site. I then waited several more weeks before finding out my test was negative. My ordeal last March to get COVID tested was the first of many moments throughout this last year where I would be reminded just how insignificant my immune-suppressed/high-risk label was to others. It would be the first of many challenges that would make me feel disregarded during this pandemic. As the months went on, I, like many others, struggled with the multitude of challenges brought on from COVID-19. This included having my businesses close, having my children’s schooling turned virtual including my youngest who has disabilities, having my spouse suddenly working from our dining room and taking a pay cut, no longer having a social life, trying to access my medical care and medical care for my daughter in the safest ways possible, etc. For me, however, the biggest strain on my brain was the continuous worry of possibly catching COVID-19 and even worse, as someone who doesn’t do well with fighting infections, dying from it.  I thought about what that would do to my family and I caught myself feeling guilty for even being high risk, even though that was clearly not my fault. Of course, we took every precaution possible. We didn’t leave the house except for medical-related appointments/picking up prescriptions (which for me is often) or my spouse leaving to get groceries. Of course, masks were always on. The disinfectant wipes, spray and hand sanitizer we had been accustomed to utilizing as part of our daily routine to keep me from becoming sick (pre-COVID), could no longer be found. There was no prioritization of these items for those like me who were in the highest risk of death category. Another reminder of how my health conditions and being high-risk really was irrelevant in this pandemic war. The lives of those like me, who are considered high-risk, was going unseen and this added a undertone of depression to my daily life that played like background music in my head, all the time. I would try to keep myself busy and think positive, but it was and still is very hard. Friends posting photos of themselves mask-less enjoying life as normal, arguments on the news derived from speculation rather than science and even individuals attacking me personally for simply encouraging people to wear masks for the sake of people like myself, all pulled on me like a heavy weight of woe. A person in my own town even went as far as to tell me that if I die, that is God’s plan and I should just accept it. As a 44-year old mother of three, I disagreed. To realize that some valued their “social lives” more than my “actual life” was beyond hurtful, not only for myself, but for my family as well. My teen daughter shared with me that a boy she knew had commented that he didn’t care if people died from COVID as long as his family didn’t die. He said, “Sick people and old people are going to die. I don’t care as long as it’s not my family.” He didn’t realize he was talking to someone with both a mother and younger sister who were considered high-risk and how much his comments hurt her. Every eight weeks, I would (and still do) leave on my trip to the hospital for my regular infusions and testing. I tear up each time, including yesterday, as I hug my spouse before leaving. Those tears come from the knowledge that no matter how careful I am, going into a hospital environment during a pandemic, as someone who is immune-suppressed and unvaccinated, is a dangerous risk. Now as the possibility for better days is here with vaccines, I am yet again feeling that pain of not having my risk factors matter in the efforts to save lives. In the county I live in, I am not currently able to get a vaccine. When I try to make an appointment for a vaccine in my area, I am disqualified from being able to at this time specifically because of two items on their questionnaire. Do you have a serious allergy to any medications, food or latex? Yes, I do. Do you have a medical condition or take medications that may weaken your immune system? Yes, I do. If these questions did not exist, I would qualify for a vaccine in my area at this time since one of my professions falls under the category of a teacher. Essentially, the very reasons why I am high risk for severe COVID-19, are the reasons that are being used to prevent me from getting a vaccine. Not only does this not make sense, but it is unethical and discriminatory, especially when high-risk individuals are getting vaccinated in other cities and states right now. I have family and friends that have been able to get the vaccine, and every time I hear that one of them has, I have an instant feeling of happiness and relief for them. But it is always followed with the sadness of the reminder that I cannot get one and the fear that comes with wondering when I will be able to. Another part of this struggle for me personally has been the comments from government leaders who spread misinformation about COVID facts including discouraging mask-wearing, as well as the somewhat cryptic information from trusted health organizations. CDC, for example, states on their website, “…individuals who take immune suppressant medication or therapies, might be at an increased risk for severe COVID-19.” However, they also go on to say, “they should be counseled about the unknown vaccine safety profile and effectiveness in immunocompromised populations, and the potential for reduced immune responses and the need to continue to follow all current guidance to protect themselves against COVID-19.” Essentially, what this tells us is they are aware that people like me are at the highest risk for severe complications, including death from COVID-19, but that because testing of the vaccine was not widely done on individuals like me, there’s no clear evidence to suggest how effective vaccines would be. All of this information leaves me in a deep black hole of fear.  I know there is a light somewhere at the end, but I just can’t see it yet and honestly, I really need to. I feel myself being swallowed by all of the uncertainty. Throughout this entire year, I have done my best to stay positive, take things one day at a time, appreciate the life I still have and remind myself to just hang on a bit longer. I can only imagine there are many others like me who have felt abandoned as a person with a high-risk condition or disability during this pandemic. Whenever I write anything, whether it be a script or an article like this, I always do so with the goal of writing something that can somehow help others. With that being said, here are my three things to remember about individuals who are high-risk for severe COVID-19 that I hope you take away from my story. 1.  If you are someone who is high-risk, immune suppressed, chronically ill and/or disabled and you have felt undervalued or forgotten about during this pandemic, please know your feelings are valid, you deserve better and you are not alone. 2.  Regardless of how you feel about masks, please wear them while in public.  Please remember that when people who are at high risk see you not wearing a mask, it makes them feel like you don’t value their life. It hurts. 3.  Although most people have some degree of fear regarding catching COVID-19, for those who are in the high risk for severe COVID-19 category, dying is a real concern. Please consider what that must feel like and if you know someone in this category, give them some extra support. Let them know you are aware that this is a hard time for them, you are there for them, and you do value their life.

    Community Voices

    COVID19 vaccine and autoimmune disease

    <p><a href="https://themighty.com/topic/corona-virus-covid-19/?label=COVID19" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="COVID19" title="COVID19" target="_blank">COVID19</a> vaccine and autoimmune disease</p>
    8 people are talking about this
    Community Voices

    Nervous 😟

    <p>Nervous 😟</p>
    20 people are talking about this
    Devyn Kerr

    Fighting Against Shame When You're On a Lot of Medication

    One pill. That’s what it started with. It wasn’t for anything special. I was 9 years old when I began having migraines, probably associated with puberty. I was so against it. I did not want to take something every single day. I did not have a choice. It was either being debilitated by pain or getting through the day. I will be honest, there are times I skipped my medication or tossed it in the toilet. (Don’t do that… save our water.) I eventually sucked it up and that was it for five more years. I was bullied, experienced abuse and developed an eating disorder, depression, and post-traumatic stress disorder (PTSD). That’s the short laundry list. I was 14 when I first went down the hole into my depression severely enough my parents finally noticed. It took everyone time and I didn’t feel like anyone cared, so when I made my first attempt at taking my own life and ending the pain, I didn’t think anyone would care. I was wrong and my family has always loved me. After the hospitalization and being put on medication I never seemed to get better. It never seemed to work. SSRIs, mood stabilizers, antipsychotics, benzos, tranquilizers, oh my. I lost track of how many medications I tried except that the list of medications I haven’t tried kept getting smaller to where eventually no good options or combinations were left. It took close to 10 years to achieve long-term stabilization. In those 10 years, I was in treatment or in the hospital constantly. I spent more holidays and birthdays locked away from my own self than I dare to remember. I do remember one thing that still hasn’t changed. The pills! I have not gotten rid of them and I hope I don’t ever have to go off my medication. You see, my house may be a pharmacy, but it is one for just me. In my early 20s, I started to also have medical problems that compounded on more pills. I still get the thoughts that come and go, to take them or not to take them. If I don’t take them I am playing Russian Roulette. It has taken me years to realize that the pills don’t define me they refine me. I can think. I can breathe. I can cuddle my daughter and not question what I mean to her and if she loves me. I can go to school and actually graduate on time and with honors (hopefully). I can accept that my body has limits and to honor my body. I can pre-treat when symptoms just begin. I can stay awake and focus. I am present with my wife and not drifting off into space. I am not curled up in a ball just wanting to stop crying. I love that I take medication because I am giving my body what it needs and what it deserves. I can’t control my genes and they don’t control me. It deserves love, symptom management and occasionally pain-free. It deserves to be calm in a storm. I deserve to be able to be as independent as I can and to take care of me. Will I lie that it is a pain to carry bottles, inhalers, rescue medication, saline flushes and caps, and a freezer pack with medication on me everywhere I go is easy? No! I don’t like that very much. I don’t like having to plan my day around how I feel and change it when unpredictable symptoms come up forcing me to cancel plans. However, I would not be here without the medical care. It is here for a reason. I use the services available and treat the dis-ease so I can be at ease. No guilt or shame here. Self-love all the way. Pills help me be the best me each and every day. My life I want to have each and every day is just one pill away.

    Community Voices

    © The Will To Live (Memoir) 2020 Ending

    This is my first shot at it, and I am excited. If I can help just one person I will feel like I have accomplished something, but if I have tons of people reach out to me I maybe one little busy bee but I will feel so good inside for doing what I am doing for free and do not want any recognition for it. I could use the money trust m e, but that is not what this is about. I know many people cannot afford to get professional medical help. I want to make clear I am not trying to be a counselor or doctor. I am just one person that has been through many trials in my life and if I can help somebody by talking to them or answering questions you may have about my story or your life please contact me. You are why I have done this. I did not do this for myself. It was hard on me, but I wanted to take it on as a challenge to try and do good in my life. Even though it brought all of it back for me, it made me realize things that I never have before and has answered questions for myself. Due to this I have benefited even if it was hard for me. I want to be the person that is there for somebody they may not have anybody else to turn to. No matter how hard it was for me bringing back these memories it will be worth it in the end if I can have a positive influence on you in a time of need. God Bless and I pray for healing of all in need. Remember, you are somebody in this crazy world. Keep your head held high!


    By: © A Small - Town Somebody 2020

    #Lupus #AntiphospholipidSyndrome #Fibromyalgia #AutoimmuneImmunodeficiency #ChronicIllness #ChronicPain #Anxiety #SocialAnxiety #SocialAnxietyDisorder #Depression #Abuse #MentalHealth #MentalHealthHero #LupusDiagnosis #CheckInWithMe

    Community Voices

    © The Will To Live (Memoir) 2020 Conclusion Continued

    I guess in a way, I can say Thank You Mom and Dad for the way you treated me because it gave me what I needed to be a survivor in the end. And that is not being sarcastic I really mean that, I am grateful that it you did not take me down with you. If you do not have that certain thing that helps motivate you try to determine what that is and do it every day. If you are wondering why I came up with the name A Small Town Somebody it is because I am from a small town in Kentucky. Many people look down on their self and always feel like they are a nobody in this enormous world we all live in when they go through hard times. Well, I am here to tell you that you are somebody whether you feel that you are or not. So, I remind myself that I am somebody in this ever - changing world I live in no matter what anybody tells me. If anybody has questions, PLEASE DO NOT hesitate to contact me. No question is a stupid question. Please never feel ASHAMED to contact anybody. It takes a strong person to say I need a little help when you usually would not seek emotional help. Never think you are too tough to ask questions or feel embarrassed because it makes you feel like a weak person. I can guarantee you if you have any mixed emotions I have been where you are sometime or another and maybe in a different way. Improving your knowledge will just help you be able to get you through your hardest times and maybe help others if this is what you want to do. I might even learn something from you that can help me because I know I do not know everything; I am far from knowing it all. I have always been a kind - hearted person that has always wanted to help people, but never knew how I could do that. I have never felt that I had a specific calling in life. I have a job that I like, but I do not feel like it is my calling. After all what I have been through medically the good Lord must have me here for a reason (I should be dead) so if this is my calling, I feel blessed to have finally found it and get to work. 

    To be cont...please visit my page for the previous thoughts leading up to this ( I am working on posting my full Memoir on my page if you are interested) #Lupus #AntiphospholipidSyndrome #Fibromyalgia #AutoimmuneImmunodeficiency #ChronicPain #ChronicIllness #Anxiety #SocialAnxiety #SocialAnxietyDisorder #Depression #CheckInWithMe #Abuse #MentalHealth #MentalHealthHero #LupusDiagnosis

    Community Voices

    © The Will To Live (Memoir) 2020 Conclusion Continued

                 I hope this helps somebody. You always think your situation is so crazy there is no way anybody can be dealing with anything like this, but now at my age I see how it has affected and changed me in ways I wouldn’t realize without my husband telling me. I have to say for me I was lucky because it made me a better person, when in most cases it could have destroyed somebody’s life and not because they are weak. I just handled it well, but I know the way I was before I got pregnant and it really helped me. Due to the environment I lived in I had a bad attitude just toward my parents. I did not let anybody mess with me. I would stand up for myself and my mother when I got older. I know you do not know my name, but I would love to hear from other people who may have questions or feel like they need help. I have been through a lot in my 34 years and if I can help anybody, I would feel like I have succeeded in what I have set out to do. Please do not ever think your story is to crazy or feel it is stupid and too embarrassed to tell somebody, trust me it is not. I would like to know somebody that may have had similar experiences as I have throughout their life.  I am going to figure how to get a blog or website going that does not have my name on it but I will officially be known as A Small Town Somebody, because like I said I would love to hear from people on issues or even on what they think about my Anonymous Memoir, that is probably at a 4th grade reading level. LOL! Well the way my ten year - old reads it may be considered a 1st grade reading level, but that is not what is important though and we know that. It gets my story and point across the exact way I remember it and I wanted to be as truthful as possible. Just to let you know I am a funny person at times and love to laugh. How could I possibly have a sense of humor after all this? And again, the answer is I do not know, but I like to be funny and read funny things. I am goofy sometimes and have been funny my whole life.  It does make us all feel better to laugh. Have you heard laughter is the best medicine?  I am sure you have; humor keeps people going sometimes. Everybody is different though; we all have something that helps keep us going. I would love to know from others what helps keep you going through hard times? I can tell you it was not laughter for me that helped me pull through. The depth of how bad I was treated gave me all the motivation I needed to pull through and prove myself. 


    To be cont.... please visit my page for the previous thoughts leading up to this ( I am working on posting my full Memoir on my page if you are interested) #Lupus #AntiphospholipidSyndrome #Fibromyalgia #AutoimmuneImmunodeficiency #ChronicIllness #ChronicPain #Anxiety #SocialAnxiety #SocialAnxietyDisorder #Depression #CheckInWithMe #Abuse #MentalHealth #MentalHealthHero #LupusDiagnosis

    Community Voices

    © The Will To Live (Memoir) 2020 Conclusion Continued

            Please never decide to end your life over pain somebody else has caused you. They will pay in the long run. Their life may look perfect to you now but trust me it will catch up to them one day. I do not care if they are rich or poor, they will have to answer one way or another. Show them how great of a person you are. Suicide is never the answer to anything you are going through. You are too important for that.  Do NOT let them win.  You may feel like you do not matter in this world, but you do. There is somebody out there that cares for you. It may not be family, but sometimes the best people in our lives are not family.  If you feel you don’t matter in this world because maybe you feel you haven’t done anything important with your life, it is never too late to make something of yourself, if that is the reason you feel suicidal. I did not go to college and get my four - year degree until I was 26 and graduated at 31. Yes, I felt like I would never get done, but it went by so quick. I do not care if you are 60 years old it is never too late to do something for yourself if you feel like a failure because of that, you are not a failure. Remember being rich, having the biggest house, or any materialistic items for that matter does not make you any better than anybody else. In this life everybody acts like it does, it is much better to be a humble, faithful person, than to be someone who owns items that will perish in this world when you leave.  You are better off to be poor and give somebody the shirt off your back than to be rich and greedy. When you pass in this life you cannot take anything with you, just your soul and that is all that counts. I am asking you to please care about yourself and realize that you do matter. If there is something you are going through specific that is making you feel suicidal please reach out to somebody. I would be more than happy to talk to you, and I would do my best to help you. There are always phone numbers you can call, and I have them listed. I believe this world has moved so far away from what really matters and we feel like we need to be up there with everybody else, whether that be money, job, vehicle, anything of this world that in all reality does not define you, even though you feel like it does. Please keep that in mind. I hope that helps you. I have many Hotline Phone Numbers at the end of my story. Please use them if you need to.

    To be cont.... please visit my page for the previous thoughts leading up to this ( I am working on posting my full Memoir on my page if you are interested) #Lupus #AntiphospholipidSyndrome #Fibromyalgia #AutoimmuneImmunodeficiency #ChronicIllness #ChronicPain #Anxiety #SocialAnxiety #SocialAnxietyDisorder #Depression #CheckInWithMe #Abuse #MentalHealth #MentalHealthHero #LupusDiagnosis