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    Community Voices

    I'm new here!

    Hi, my name is Gwen_6. I'm here because I am a single, older mom with disabilities who is the primary caregiver of my adult daughter, 36 yrs old, who already has several chronic physical illnesses and mental health issues who recently suffered major complications after elective surgery for gastroparesis and was septic and has PTSD after being in ICU on a ventilator. She lost her job, has no income, is disabled and malnutritioned with feeding tube and IV port. She feels hopeless and I am exhausted. Her dad, my EX, lives far from her but finally came during her hospital stay and then left after taking her to her own home. He caused major problems to me with his sudden taking control over her while she was in a coma and I was her health care POA, but nobody respected her 5 wishes. She is not nice when she doesn't feel well and I try every day to be positive and keep her hopes alive but I can't do this alone and I can't cover her mortgage and debts and utilities as I am on SSDI and struggle. Her Gofundme ran out and I can't find her help for personal cares and some chores in her home and she is waiting to get appeal for SSDI or SSI and it's 3-6 months wait so nobody will help her until SS approves her. She is now on Medicaid but she can't live without funds and she needs to keep her house she can't move in with me. Her sister is 21 and they won't talk anymore. She has EDS but is adopted but my bio daughter has many similar characteristics of EDS. I'm suffering from trauma taking care of her needs because of her many needs and she doesn't treat me very good at times and I'm her driver and her only person who is available after she's been home 3 months. My 21 year old is living in my home but i barely see her and I have a cat dying of liver cancer.

    #Depression #Migraine

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    Community Voices

    I'm new here!

    Hi, my name is MistressPlaid. I'm here because I'm struggling with adult-diagnosted ADHD and anxiety disorder, and am having a hard time getting timely and useful care from my psychiatrist, and am struggling with adulting on almost every level.

    My ADHD symptoms have been getting progressively unmanageable the older I get, and tonight's late-night tunnel-vision research was centered on trying to find out if my childhood spinal meningitis (and resulting 2 weeks in a coma at age 2, right-side brain damage and inner-ear hearing loss, and more) would help explain my ADHD, and see if I can find a path to manage it.

    I'm a former sex educator and sex toy expert (though that one might be something that never stops being a super power) and have used my ability to be in the flow to be present with people and help them know they are *normal for them* and are worth loving. I'd love to flex those neglected helpful muscles here, too, if the opportunity reveals itself.

    #MightyTogether #ADHD #Anxiety #SexEducation

    2 people are talking about this
    Community Voices
    Kate

    Thoughts for tonight..

    It’s like falling, waking up out of this emotional coma that I call Bipolar and PTSD combined..
I feel sick, every time I think of her. I want to fall to my knee’s and cry, not just cry but breakdown with tears streaming down my face. I feel like I’m falling, into a constant well even when I’m waking up out of this said emotional coma.

It’s the grief of losing a child to another family, that is partially hers- that bit I don’t understand. I do not understand how I can grieve for a child who is alive but somewhere else..

I feel like I’m a zombie most days, due to these meds, I have gained excess weight, I have stiff joints, I have pain in my muscles too. I feel dead inside. Thats what I feel. Most of my time. Dead. Inside.

    2 people are talking about this
    Community Voices
    Community Voices

    Why am I here?

    23 years ago this month I got into an auto accident that hurt me a great deal physically and would later progress into segmental Dystonia.

    I feel very very ambivalent this month each year because I’m not sure why I survived. So I take it easy on myself and become pretty quiet.

    I don’t know and I don’t believe anyone does. So I do the best I can after surviving a coma, broken bones, a ruptured spleen, etc. Sometimes it’s best to just be quiet and other times it’s best to get busy.

    We’ll see how it goes today…

    13 people are talking about this

    Struggling With Religious Belief After Medical Trauma and Disability

    I was born into a Roman Catholic family. We went to mass on religious holidays, had weddings and funerals officiated by priests, and prayed before meals at family gatherings. Like most of the other kids I knew, I was baptized, attended Catholic school from K-12, and celebrated my First Holy Communion, Confirmation, and Confession. I read the Bible, completed the mandatory Religious Studies in each grade, and memorized the Lord’s Prayer and the Hail Mary. In my child’s mind, God was a mysterious and powerful figure who watched over me (which was simultaneously comforting and frightening), Heaven was an ethereal idea of the wonderful place waiting for me when I die, and Hell was the terrifying end I would experience if I had been a bad person. In my teens, I learned about other religions of the world, and my perspectives on spirituality expanded and evolved. While I did not doubt the existence of a Higher Power and the possibility of life after the death of my physical body, I began to question the contradictions and circular logic within the religion I had grown up in. As a result, I abandoned Catholicism, and became Agnostic for many years. In my late 20s, I discovered Paganism. This earth-based faith, with its triple aspect female deity and her male consort, supported the values and ideals I had developed over the years, and I embraced its practices and celebrated its holidays with enthusiasm throughout the following decade. But a few months after my 38th birthday, my life took an unexpected turn, and my attitude about spirituality did an about-face. After a series of vaccines, I developed a rare neurological autoimmune illness that hospitalized me for 18 months. As a result, my spiritual peace of mind came to an abrupt end, and I have been living (perhaps even struggling) with its absence for the last 12 years. The illness and rehabilitation process was the most terrifying, depressing, traumatizing chapter of my life, and not once did I experience the support of a higher power or any indication of an existence beyond the physical realm. Did I pray? You bet I did! I prayed in earnest. I begged. I raged. I tearfully pleaded for relief from the pain, fear, and loneliness I was enduring. When I didn’t receive a response from the Goddess of my Pagan faith, I reached out to the God of my childhood. Sometimes I prayed for healing, sometimes for guidance, sometimes even for death. I received no reply. Twice, while I was in the six-week coma, I teetered on the brink of death, but I was completely unaware of it. There was no tunnel, no white light, no passed loved ones coming to greet me, and certainly no godly entity welcoming me to an eternally peaceful plane of existence. There was nothing. Just a blank space where time continued to march on without me. I was certain that such a sudden and traumatic event should elicit some sort of spiritual experience or divine intervention. When it didn’t, I felt disillusioned and slightly betrayed. I had spent so many years having faith in a higher power, but when I needed them the most, they were nowhere to be found. I came to the conclusion that it must be because no such entity exists, and there is no realm beyond death; when we die, we simply cease to exist. I have shared my feelings and conclusions with many different people, and it has been met with a variety of reactions, from sorrow for my “loss” to outright judgment of my “attitude.” I have been given advice on how to find God again, and heard all the vague explanations and platitudes: “Everything happens for a reason.” “God only gives you what you’re strong enough to handle.” “Maybe there is a lesson in this that you’re supposed to learn.” “God works in mysterious ways.” “God always has a plan.” But none of these have been helpful to me in coming to terms with my experiences versus my expectations. In fact, many times, they have only created more questions. My husband once said, “You can pray as much as you want, but sometimes the answer is ‘no.’” My response to this was, “But why?” Why would a benevolent, loving, compassionate god not want to help if it’s within their power to do so? Why would they stand aside and allow such intense suffering to continue? And if there is some divine purpose for it, why wouldn’t they at least offer a guiding hand? It made no sense to me. The alternative was much more logical. It was even somewhat comforting to imagine that death was like falling into a dreamless sleep, where all my pain and worry would simply wink out of existence. So I’ve spent the last 12 years denying the need for spiritual practice, and viewing life and death in much more “realistic” scientific terms. Recently, however, I have found myself revisiting the possibility of a higher power and life after death. My husband passed away from liver cancer two months ago. He had a lifelong faith in God and Christ, and was always curious (even sometimes excited) about what his existence would be like after his death. He loved astronomy and absorbed every bit of new information about space and the latest scientific discoveries. He often said that he hoped, when he died, that God would let him fly around and explore the universe. I miss him terribly, and often talk to him, hoping he is listening. The possibility that he no longer exists is deeply disturbing to me. I cannot stand the thought that he might not have gotten his wish for his afterlife. And the idea that I will never see him again fills me with a profound sadness. The dichotomy of believing there is no existence beyond death and hoping my husband still exists somewhere created an eddy of uncertainty that has sparked a whole new conversation with myself. So, once again, I am allowing myself to explore the possibility that there is more to life and death than science can explain. I am only human, after all, with knowledge and perspectives limited to my existence on this plane, in this reality, in this physical vessel. Absence of evidence is not evidence of absence. Who am I to say what other possibilities and realities exist? I have no idea where this new openness will carry me, but I must admit that releasing my anger at god(s) and resistance to spirituality has calmed a simmering tension, and created a budding sense of calm. Most importantly, it has reminded me that spirituality is deeply personal, and is impacted by our experiences and circumstances. No one has all the answers, and no one alive knows what exists beyond this physical realm. There is no “right” answer, no step-by-step guide to attaining enlightenment. Every journey is valid, regardless of what you believe and where you are on that journey. If, like me, you have struggled with spirituality, be gentle with yourself. Allow your thoughts and feelings to evolve in whatever way feels right to you, and don’t let anyone convince you that you’re wrong. You don’t have all the answers, and neither do they.

    Community Voices

    How many people wake up to take their daily medication and seize the day only to fall flat on your face after tripping over a rock you didn’t pay enough attention to? Today, that rock has been a dirty thing (a representation of a collection of thoughts on an otherwise clear mind or “rock”) that I hadn’t acknowledged lately. Since then, I’ve attempted to ignore it but the thoughts keep coming to me.

    “I’ve cut all communication with my emotionally abusive dad (who is in a mental hospital for severe mental illness treatments and have stopped talking to since September last year), so why do I miss him? Why do I want to talk to him? Is it worth it?”

    “I cannot help that I fidget so much nor that I often feel on the verge of tears, I am trying to be empathetic, and I am trying not to feel the urge to eat. I feel fat and pathetic. Am I worthy enough for my loved ones? Why does their reassurances feel false?”

    I’m torn between frustration, sadness, shame, guilt, and I find myself in a constant state of apathy. Sometimes all I want to do is nothing. Maybe tomorrow that may change. I cannot give up. It isn’t an option, but I just want to fall into a coma like state.

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    Community Voices

    Hopeless

    My entire life I have always knew something was wrong with me. Only after a suicide attempt and 9 days in a coma did I finally receive a diagnosis. Borderline Personality Disorder, just the name alone freaks me out let alone those I love. I mean I feel like a monster most times. Always feeling alone, blamed for all negativity, just never capable of doing anything right........

    I have been doing therapy, writing, music every chance I can to keep my mind from going into panic mode but it doesnt always work! I try, I just want to be "normal" doesnt seem like the pain, loneliness and complete feeling of failure will ever truly go away.

    I try the fake it til you make it.... Only thing I realized after each time was I was only fooling myself! My disease will always burden my life and those around me.

    During one of my most difficult times I researched and reached out only to find that the stigma behind my diagnosis never allows anyone to see me. All they see is my disease.

    I hate it! I hate how it makes me feel, how it makes me wonder when everyone will just abandon me as they always do. I dont know how to fix it or change it.

    Im not allowed the opportunity to have a slip up cuz each time it costs me everything. I have a manic panic moment and i lash out from fear and immediately I get thrown to the waste side. I am not perfect I will always have this disease to fight constantly and doing it alone is impossible already.

    I dont know how to understand or express to others so they can understand so I am just left alone.

    Finally realizing that the options in my mind have narrowed so narrow that just one lurking thought continually creeps back in.

    I dont know what to do anymore.

    3 people are talking about this
    Community Voices

    Happiness is Not Automatic

    <p>Happiness is Not Automatic</p>
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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!