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    Community Voices

    First Time Here, Share your Hope

    I was dxed in 1998 with Lupus, and soon followed Fibromyalgia and RA and Reynaud's and Sjogren's and that is plenty. I have severe Osteoporosis from decades of steroids before the newer meds came in. I suffer from daily, chronic pain. I have intense gastro issues and a colostomy. Just to get up in the morning can take 4 hours before I feel well enough to stay standing. I am a woman of faith. I still volunteer each week and I teach twice a week on line but each day it seems harder and harder. I am a visual artist and this helps me.

    I live in a state that wont allow medical marijuana. Its a state that frowns on pain meds and well, I suffer greatly for it. I still fight to be an active member of society but it grows harder. I am 64. Tell me, where do you find your hope? Or do you?

    1 person is talking about this
    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, also known as 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?

    Community Voices

    Regret of once again , overdoing it..

    We had a severe storm go through here Monday,, thankfully we didnt have any bad damage,, just three fence panels went down,, and huge branches and tree limbs all over the yard, front and back.. sooooo I went around for two days picking up all the branches and twigs, tried to protect my low back , pace myself,,, then today mowed the front yard,,, you know the literal straw that broke the camels back?? Well that was the last straw... I can hardly move now, my neck and shoulders are killing me , causing a big headache,, my back is weak, and low back is sooooooo weak.. I did take precautionary measures,, and post overdoing it measures,, I am not new to this game,, Ive been in chronic pain since 1980, and even before that,, have multiple arthritic conditions and autoimmune pain conditions, fibro,,, degenerative disc disease, scoliosis, severe osteoporosis, ect..... Im in my 60s,, . I have a question for those of you who have lived lives of chronic pain. Do any of y'all ever get so sick and tired of being cautious, of holding back from doing things, things you enjoy,, for me its working outside, being in the sun,, doing physical things.. So sometimes do any of y'all just say screw it and do more than you know you should,, knowing full well you will pay later?????????? Or is it just me????? I know I will get through this,, I will be miserable for anywhere from a few days, to a week or more... but sometimes I get so tired of holding back.

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    Monika Sudakov

    When Endometriosis Meets Menopause: A Recipe for Disaster

    “The only thing predictable about menopause is its unpredictability. Factor in widespread misinformation, a lack of research, and the culture of shame around women’s bodies, and it’s no wonder women are unsure what to expect during the menopause transition and beyond.” – Dr. Jen Gunter Menopause is as unavoidable as puberty, a natural process our bodies undergo as part of the life cycle. Most doctors do not have accurate or thorough information to help guide people through menopause, and there is a communication gap among women where matters of menopause are concerned. Brief references to hot flashes, mood swings, and perhaps a flippant comment about sex being uncomfortable may be shared, but frankly, as a woman of a certain age, the discussions are few and far between. Where does endometriosis fit in with this discussion? One of the pervasive myths about endometriosis is that menopause cures it and that endometriosis can only exist in those who have reproductive capacity. While endometriosis is considered an inflammatory disease that is estrogen-dependent, this assertion is patently false. Not only can those with endometriosis continue to struggle with the condition post-menopause, people who have never had endometriosis can develop it post-menopause. Actual numbers are difficult to assess due to the persistent lack of research surrounding both endometriosis and menopause, but according to this research article by the National Center for Biotechnology Information, the prevalence of postmenopausal endometriosis ranges from 2-5% of postmenopausal women. Considering the difficulty that exists in terms of recognizing symptoms and diagnosing endometriosis to begin with, this presents the post-menopausal individual with a seemingly insurmountable hurdle should they indeed develop endometriosis. So what might be driving post-menopausal endometriosis? The general theory is that peripheral estrogen production, meaning estrogen that isn’t being produced within the ovaries, can stimulate the growth of endometrial lesions. This type of estrogen continues to exist in varying levels among post-menopausal people. Layer on top of that the use of hormone replacement therapy (HRT), which stimulates estrogen production, and this can re-activate or activate for the first time the production of endometriosis. Hormone replacement therapy is the gold standard for addressing the myriad symptoms associated with menopause. It can also help to stem the onset of bone density loss and osteoporosis, a common and potentially debilitating condition that can cause bone fragility and more frequent breakage. While most people tolerate HRT well with few to no side effects, some might be at a higher risk for estrogen-related diseases like endometriosis and certain types of cancers. Additionally, many of the symptoms associated with endometriosis such as gastrointestinal discomfort, bloating, constipation, pelvic floor dysfunction, urinary tract pain, and painful intercourse are common indicators of cancers that tend to affect post-menopausal women at higher rates. These include uterine, ovarian, and bladder cancers. This makes the diagnosis of endometriosis that much more complicated. Doctors are far more likely to order tests to rule out invasive potentially life-threatening cancers than they are to start with the diagnostic laparoscopy needed to identify endometriosis. While this makes sense based on our current medical system, it does mean a delay in or outright failure to diagnose endometriosis among post-menopausal people. So what can post-menopausal people do? First, those who have a history of endometriosis should have an in-depth discussion with their medical practitioners weighing the pros and cons of HRT usage. If they have had a hysterectomy, there is some indication that the recurrence of endometriosis might be less likely, however, that is not a definitive recommendation. And there is extensive literature suggesting the direct correlation of endometriosis to the development of malignant tumors at the site of the endometrial lesions. Therefore, HRT may be contraindicated in those with a history of endometriosis. Localized vaginal progesterone might be the best alternative for these individuals in managing their menopause symptoms. For those without any kind of history of endometriosis, the risk is relatively low, therefore the use of HRT in managing symptoms is not typically contraindicated. The bottom line? Just as with endometriosis that occurs amongst pre-menopausal people, if you have symptoms consistent with endometriosis, don’t let your doctor dismiss them. It may be life-saving to get an early diagnosis so as to curtail the potential development of cancer. Beyond that, however, there’s no reason that you should continue to live with debilitating symptoms consistent with endometriosis beyond menopause. Excision surgery is relatively safe for most post-menopausal people and can effectively address the majority of symptoms associated with post-menopausal onset endometriosis.

    Community Voices

    Useless new learning.

    I was reading an article about forms of child abandonment. It was during the Dr Spock era where babies were left to "cry it out & figure how to self soothe". Considering my age I fit along with the fact I started shaking, feeling overwhelmed, literally ill. At 2 weeks of age I was sent to the hospital with originally was thought (burns from a cigarette) from my mother. Those blisters began to spread, I was put in an isolation ward all by myself while nurses doctors tended me. No one was allowed to visit. I was told I was very sick. Dr. kept changing the formula my father would make and drop off. I was baptized in the hospital I have the records. They treated the blisters with genting violet, I began getting better. I went home at 5-6 weeks of age. This may explain why I always felt I could only rely-trust myself. I was an only child but even in groups I played by myself had to be coaxed into joining groups"kindergarten", hard time making friends. None of that made any sense as to why I felt a loner because in the first critical weeks of life I was left to my own resources except for somebody coming into hurt me or to feed me. It explains a lot about my life, and I'm just finding out about that now? Including the fact at 2 yrs of age I was sent to stay with my paternal grandparents to be fully potty trained at exactly 24 months which was accomplished in 2 weeks, explains even more. Why do I say useless learning? Most of my life is behind me I have some left at what point does new information become more hurtful and useless?
    Bastrop syndrome #
    Bone spurs #
    Fibromyalgia #
    Gerd #
    Hives angioedema#
    Hiatal hernia#
    Peripheral neuropathy#
    Pseudo gout#
    Raynaud's syndrome#
    Unstable lumbar spine#

    Community Voices

    Last spring, I was 23, and I was diagnosed with osteoporosis due to years of not prioritizing my mental or physical health. I was accepted into the doctorate program I am currently finishing my first year of, around this time. That june, I graduated with my masters. a good friend of mine offered to drive me home from the masters graduation party our cohort was throwing. that night someone I considered a dear friend of mine, who had met my family, who I trusted with vuneral parts of myself, sexually assaulted me.

    That summer I was diagnosed with bipolar, and have cycled through highs and lows the past year. i’ve been managing really well, and it’s been really hard. sometimes I feel like no one knows that i’m having such a hard time, and other times I feel like everyone is watching me struggle.

    As June approaches, a lot of memories are coming up. it’s been really hard. and i’ve been really sad. trying to be compassionate with myself on the journey. #BipolarDisorder #SexualAssault

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    How Long-Term Hospitalization Can Severely Impact Dental Health

    When my sister and I were children, my mother would put fluoride in our milk every morning, made sure we brushed our teeth twice a day, and took us for regular dental checkups and cleaning. Throughout my teens and adulthood, I remained diligent about my dental health, and aside from rebuilding a broken front tooth and two years of braces, had no dental work whatsoever. Not a single cavity in 40 years (which, apparently, is very unusual). But that all drastically changed in my 40s. In 2009, as a result of a rare neurological autoimmune illness, I was hospitalized and mostly bed-confined for 18 months. During my hospitalization, I received no oral health care that I can remember. When my mouth was dry, I was allowed to suck on a small, moistened sponge on a stick. Much later, I was permitted to chew ice chips, and suck the resulting water from my mouth with my suction wand. Near the end, after I had the tracheostomy removed, I relearned how to swallow and was finally able to eat and drink by mouth again. Never once, in the year and a half I was hospitalized, was my mouth cleaned or my teeth brushed. My oral health was completely overlooked. Under the circumstances, I imagine it was probably the last thing anyone was thinking about, including myself. But I wish it had been included in my daily care. It would have saved me a whole lot of discomfort, time, and money in the future. Some time after I left the hospital, I was finally able to see a dentist for a cleaning and check-up. The cleaning took an extraordinarily long time, and I grew more uncomfortable with each passing minute. I struggled to hold my mouth open and body still as the hygienist scraped and polished away years of plaque and tartar build-up. Afterward, the dentist looked at the x-rays and examined my teeth, then delivered the news: I required five fillings, and was going to need a root canal in one of my molars. For someone who had never had a cavity, this was quite a shock. I went ahead and booked the appointments to have the work done, and began following all the dentist’s recommendations to prevent further dental issues. Little did I know that this was only the first of many more issues to come. As the years marched on, despite my best efforts to maintain excellent oral hygiene, my teeth continued to deteriorate. I spent several years returning again and again to the dentist’s chair, wading through the red tape of funding, and often draining my already meager bank account. Today, I have 15 fillings, five root canals, five crowns, one implant, and I’m still waiting for funding approval for two more crowns. My husband’s dental insurance is pretty good, and the Ministry covers up to a certain amount per year. However, dental work is expensive, and many procedures (like crowns) are not fully covered, and some are not covered at all (like implants). So why did this happen? Tooth decay isn’t often noticeable right away. It can take some time before it is identified, and an improvement in oral care can prevent further decay, but does not reverse the damage that has begun. This is why I kept returning to the dentist for years after I left the hospital. There are many reasons for dental health issues, but the three main reasons people who have been hospitalized for an extended time develop tooth decay are dry mouth, inadequate cleaning, and medications. Dry mouth: The number one reason why long-term hospital patients develop dental issues is dry mouth. There are multiple reasons why a patient develops dry mouth, including ventilation, open-mouth breathing, brain injury, and disease. Saliva is an important component of oral health. Saliva provides a natural defense against acid erosion by neutralizing acids within the mouth, washing away food debris, and restoring minerals to the teeth. Decreased saliva production often leads to tooth decay and gum disease. Inadequate cleaning: When a patient is in the ICU and medical staff are fighting to keep them alive, oral health care is the lowest concern on the priority list. Issues such as lack of consciousness, intubation, ventilation, seizures, etc. prevent oral care from being performed. But even when the patient stabilizes and begins to recover, oral care is often overlooked. It is simply not included in the procedure that nurses and hospital aides follow in caring for patients. It wasn’t until I left the hospital and entered rehab that dental hygiene became part of my daily routine again. Medication: Some medications may have a direct impact on dental health by causing inflammation, infection, enamel erosion, or bone problems. Many medications, however, impact dental health indirectly through the side effect of dry mouth which, as I explained earlier, is a common cause of tooth decay. The fact that dental care is separate from health care is a mystery to me. Our mouths are a part of our body, and our oral health can impact our physical health. Gum disease is linked to a host of illnesses including heart disease, diabetes, respiratory disease, osteoporosis, and rheumatoid arthritis. Here in Canada, the importance of dental health and its link to overall wellness is becoming recognized, and there is a push for universal dental care. Until that happens, if you have a loved one in medical care, make sure oral hygiene is a part of their regular routine. They (and their wallets) will thank you!

    Community Voices

    Life’s Not Nice At Times

    Trigger Warning!!

    I lost all my friends bar one when I became psychotic and manic in 2007 and again in 2008. It was a sudden thing that happened in 2007 and the trauma of it caused the onset of my bipolar and the unblocking of memories from my early childhood. My CPN said I disassociated with it all. Although I had some memories that have always been with me. Although these memories were so weird and unfathomable. Once I had the awful reminders, I finally understood what all the other memories meant!
    Last year my last remaining friend took offence to me calling her out for not showing up without any kind of contact to let me know! She had no good reason . Even if she did have a reason she could of just kept me in the loop! I was so surprised she has ‘unfriended’ me, so’s to speak. I can’t even call her. I’m blocked! Perhaps it was just an excuse. That’s what she really wanted! We’ve been friends for over 35 years! I miss her!
    On the 29th December 2021 my bf ended our 11+ year relationship. He said he loved me on Christmas Day and then a few days later he dumped me … by text message! We weren’t arguing. Just had a small disagreement. Totally minor. He has said it wasn’t that! We had always got on so well! It still doesn’t make sense!
    So now I’m going it alone! Not quite alone as I have my son. He’s also my carer as I have several physical disabilities and disorders.
    I do have a lot of online friends from the art groups I’m in. Just would like to meet up with them. I would like a friend in the real world suppose.
    This year I’ve had and I’m still having several health scares. First my right forearm has rather large lumps .. going the full length of my forearm on one of the lumps. I also have oral problems and have had to have biopsies and scans done. I’m now being checked for ovarian cancer. To top it off nicely, my right shoulder has become so painful I can’t function. I’m being investigated to see what the problem is. Because my right shoulder is in such a state I’m unable to draw for any period of time. It’s just too painful.
    I feel like I’m being robbed of everything that gives me joy. I feel so miserable! #colouredpencilartist #wildlifeartist #Disabled #Bipolar #sexualabusesurviver #depressed #Mania #Psychosis #MentalHealth #GiantCellArteritis #AutoimmuneDisease #Osteoporosis #spondylitis #Fibromyalgia #PTSD #Flashbacks #AterialvenousMalformation
    #MentalHealth #physicalhealth

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    Community Voices
    Community Voices