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    Community Voices
    Community Voices

    My journey of 3 years and still no end

    A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
    Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
    An aftermath that is not yet completed.
    In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
    On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
    Lung function tests showed I had little breath and wheezed and panted and coughed.
    But no reason could be found.
    After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
    At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
    I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
    I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
    Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
    But still, my oxygen levels overnight are too low.
    And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
    I have #Hypoxia but how is it caused?
    No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
    I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!

    Community Voices

    It's all just too much

    #TraumaticBrainInjury I got my first TBI 37 years ago. Had bad car accidents 6 & 8 years ago. People running stop signs.
    I have car PTSD and around DV.
    This past October I was assaulted by someone I was dating. I was on a vent for 3 days.
    Because of the lack of oxygen I now have Hypoxic brain injury. The first 5 months after were terrible. My brain is broken, anxiety and panic all day everyday.
    My brain was doing so much better. I was so proud of my self.
    Second week of May I was admitted to the hospital with septic pneumonia. Got three breathing tubes on the right side so that one was doing better.
    After 7 days I go home. Two weeks later back at the ER. Now it's the left lung which was a mess the first time I was there.
    So that ends up being two more times I was hypoxic.
    So TBI x2, PTSD, Hypoxia x3. I have had quite a set back brain wise. I'm angry, way confused, sad and really really tired. # brain injury, #PTSD , #CRPS , #DDD , #Fibro

    31 people are talking about this
    Community Voices

    Questions about support
    # thyroid cancer
    # paralyzed vocal cord
    # bone on bone in knees
    # insomnia
    # trigger fingers
    # spondylitis
    # hypoxia

    My family thinks I should do more. Get out of my house. I'm having a knee replacement in March. Loads of health problems. My children are adults. Where is it they want me to go? I live on a fixed-income. I am happy at home. I pay my bills, get groceries, keep my grandbaby when asked. I have a home I'm comfortable in. I really don't have a clue as to where to go 😕. Did I mention compromised immune system? A pandemic is all around us.

    Community Voices

    Nucala and Anaphylaxis

    Does anyone else take Nucala to control their asthma? I've been taken ng it successfully for years and sometimes it felt like it was the only thing really keeping me breathing. On Christmas Eve I had an anaphylactic and hypoxic reaction after receiving my injection. I'm so grateful to the nurses who responded quickly during my observation period, but I'm so scared about not being able to take it anymore. Has anyone else had a reaction like this and beeen able to continue Taking it or are there athoer biologics out there for eosinophilic asthma?

    #Asthma #Nucala #Anaphylaxis #Hypoxia #Biologics

    1 person is talking about this
    Community Voices

    DOES ANYONE HAVE ADVICE? #Rare diseases #chronic illness #Anxiety #Selfcare Moghty poets

    I feel alone. I am a divorced disabled mother of 3 beautiful teenagers. I became disabled a few years ago. At first I was diagnosed with FIBROMYALGIA. It started by me falling asleep at my desk at work every day. Then I had to leave my medical job and tried to work every other day as a nanny because after a 6 hour day of work I would have to rest and sleep in the bed the next day or I would get physically sick and weak everywhere. I would even lose my voice
    Then it started everyday. My muscles got so tired and shaky when I walked. I went to a neurologist and found out I had idiopathic intracranial hypertension. Too much pressure on my brain, then I started going down hill. In and out of the hospital for pneumonia and staph on my lungs. My inmunesystem blood work was low. My legs face and arms would swell really bad and I would get cellulitis. I then started getting out of breathe. They performed a heart cath and said I had pulmonary hypertension and also chronic hypoxia. I got the swelling some what under control but now it's my brain. I get huge headaches in the back of my head. I also get dizzy if I try to stand. My vision is getting worse. I see double when I am reading and my back hurts in the middle. My doctors had to get the other stuff under control first before my head. I am now going to have 3 MRI S ANDgo to a neuro ophthalmologist to see if I need a shunt for my brain. ALSO NOW I HAVE TO SIT IN THE DARK 24 HOURS A DAY BECAUSE ANY KIND OF LIGHT WHETHER ITS THE SUN, TV, LAMP OR ANY KIND OF LIGHT my FACE AND ARMS GET REALLY RED, Hott to the touch and it feels like 3rd degree burns. Also when I stand up. No one can figure it our. MY DOC SAID I NEED TO GO TO THE MAYO CLINIC. I REALLY NEED HELP. I HAVE RAISED MY KIDS ALL BY MYSELF. THEIR DAD HASNT BEEN IN MY KIDS LIFE SINCE THEY WERE LITTLE AND I DO NOT HAVE ANY FAMILY. I AM MISSING OUT ON MY KIDS LIFE. IF ANYONE CAN HELP ME PLEASE??

    13 people are talking about this
    Community Voices

    Have you ever been treated as a non-emergency by Emergency Responders because of your preparedness?

    Many people with life threatening chronic conditions know the difference in response time in an emergency can mean a quick treatment and stabilization vs permanent organ damage, brain energy, death sk we learn how to prepare like second nature mike our life depends on it because it does.
    So for the non chronicle ill this might look like that well prepared soon mama to be who's got it all together, with her go bag and plan of care sheet.
    My question is how do emergency services respond to your care?

    I'm asking because usually fof me this makes things much smoother the emergency preparedness go bag means if I can't move ,If I can't speak all the information is there for life saving care to be provided.

    But recently I had the most terrifying experience, instead of being provided the life saving care needed, I was greeted with statements from responders of "we can't help you if you won't talk to us" we can't takd you for help if you won't get on the gurney"
    "sorry we're going to have to change busses at this parking lot, they can't start the football game because we aren't there"

    I eventually got to the hospital Early enough for my Ver Good Doctor to record a stroke Too Late for him to intervene in the damage done by lesions due to hypoxia.
    The Irony, apparently my completely preventable unselfinduced brain injury was too inconvenient for emt responders to stabilize because it was delaying the opening of a sport that causes how many completely preventable brain injuries to minor children every year?

    1 person is talking about this
    Rachel Mewes

    Bias Against People With Down Syndrome in the NHS

    In 2016, the Learning Disabilities Mortality Review was created as a response to the findings that people with learning disabilities were dying prematurely. The government response to the LeDeR report was published in February 2020, was rapidly followed by the coronavirus pandemic and has perhaps not been given the attention it deserves. It states that “through LeDeR we are revealing and challenging the often deep-rooted systematic and cultural issues that exist within the health and social care system that prevent people with a learning disability accessing the high-quality care they deserve.” The review has previously highlighted DNAR (do not resuscitate) orders being issued for people with a learning disability and the need for mandatory staff training on learning disability. Our government recognizes that we need to “act now to address glaring inequalities.” The LeDeR investigations into every death of a person with a learning disability, and examining whether the culture of negative bias in our healthcare system has created factors leading to mortality, is a welcome move for families like mine. When I take a step back and look at my daughter’s care, provided by the NHS, I see the bias embedded in our healthcare system. And this bias, ultimately, leads to Betsy having fewer human rights than people without a learning disability. That’s not something I am willing to settle for. It’s a hard pill to swallow for medical staff to have to look at their own practice and examine how their normalized bias is affecting how they operate. I have experienced anger and ridicule from NHS staff when I have previously raised this issue. I have had comments that the LeDeR report is unnecessary, outright denial that prejudice exists and even comments that the treatment we experienced was in our best interests. As a teacher, I am used to reflecting on my practice, highlighting areas for improvement and changing to make myself better. I don’t take criticism of issues within my profession as a personal insult, they are used as a learning opportunity to improve practice. This barrier, of refusing to even entertain the idea that people with learning disabilities are being discriminated against is a major stumbling block in the aims of the LeDeR. How can things change for the better if medical professionals won’t engage with recommendations? My daughter is almost 3 years old, and even before she was born, we experienced prejudice from doctors, nurses, midwives and healthcare staff towards her. My daughter has Down syndrome. In 2019 I learned that 19 patients had died between 2016-18 after Do Not Resuscitate Orders had been issued, with the reason stated for withholding medical care as “Down syndrome” or “learning disabilities.” Doctors were given a warning that learning disability is not a reason to issue a DNAR. As a result, I ordered Betsy’s entire medical notes and checked them thoroughly. No mother should have to trawl through paperwork on her child to check that she hasn’t had her right to life removed. Let me detail the embedded prejudice that Betsy has experienced from before birth. The first incidence of bias I can recall is when I was 29 weeks pregnant and a scan revealed Betsy had duodenal atresia and markers that indicated Down syndrome. I was asked if I wanted to have an amniocentesis performed to find out if she did have DS. I agreed to the procedure, a decision I feel immense guilt about now, not to mention horror at the danger she was put in. You see, I had been given two massive doses of steroids in the 24 hours leading up to being asked to make this decision. The drugs affected my ability to assess the danger to my baby from the amnio. I was not in a fit state to consent to a procedure that carries a risk of miscarriage and yet a form was placed in front of me, which I signed, while not being able to fully comprehend the consequences. Betsy’s life was put in danger at this point. Why is that? Is it that the lives of unborn babies with Down syndrome are valued as less worthy than others? Following this test I was admitted to hospital to be monitored. During this time I chatted with some of the midwives and nurses about Betsy. I explained there was a possibility she has Down syndrome and that I wanted to find out a bit more about if the condition would impact on breastfeeding. I was told by one member of staff that “Down’s babies don’t breastfeed” and another stated that my baby would be a “child for life.” I was shocked and sickened by the ignorance. What do you think the impact would have been on Betsy if I hadn’t already had an awareness of the high capabilities of people with Down syndrome, as a result of my career? I probably wouldn’t have breastfed Betsy, which would have been detrimental to her recovery from duodenal atresia surgery and weakened her immune system. I probably wouldn’t have had such high aspirations for her and maybe I wouldn’t have engaged with early intervention education to support her development. There is a knock-on effect on a child’s development of being told incorrect information by people who have no training in learning disability and who have a distinct lack of awareness about how their own prejudice is affecting their practice. The way we were given the diagnosis was appalling. The consultant told us that the amniocentesis confirmed Betsy had Down syndrome and then after a short pause I was then told “You can still have a termination.” I was 7 months pregnant and had already stated my wishes multiple times that I did not ever want to consider that. I was given overnight leave and encouraged to go home and think about it. To think about my daughter, who staff referred to as Betsy, a tiny person, having a lethal injection into her heart to kill her so I could give birth to her dead body. I still have PTSD from this experience. This dangerous, prejudiced view from fetal medicine consultants and midwives countrywide, that presents to families that termination is the first option after a diagnosis of Down syndrome is unspeakable. My experience is reflected in the stories of thousands of other women in the U.K. Betsy was lucky that, despite the tornado of negativity towards her, I held firm to my own professional knowledge of Down syndrome. I’ve always been proud of my qualifications and experience in teaching people with learning disabilities and it has been a passion since I was 18. Yet, even I felt that the medical staff I encountered were asserting their own opinions, prejudice, ignorance and antiquated views over, not only my higher level of experience and knowledge of Down syndrome but over my wishes as a mother. This became evident when we were called for another meeting. The consultant wanted to ascertain, yet again, that I did not want to have a termination. I stated, yet again, that I did not want to consider this. This was the last time they asked me, but the horror of that period in time will never leave me. The pressure to think about having an abortion, the effect on a pregnant woman of hearing consultants talking about killing your baby, the imagery in your mind associated with this has lasting damage. To compound the prejudice further, the consultant who did my daily ultrasound scan started referring to Betsy as “the fetus” after she had been given a diagnosis of Down syndrome. Previously referred to by staff as “baby” or “Betsy,” she was stripped of her humanity as a result of her having an extra chromosome. So we can see that even before Betsy was born I encountered multiple examples of dangerous bias from a range of NHS staff. Each one of these incidents put her life at risk or has the effect of reducing her level of care and opportunity in life. I sound clinical writing all this out, but make no mistake, it causes me immense pain and fear to recall how my daughter’s life was disregarded so readily. These few examples only really touch upon the overwhelmingly prejudiced attitude to Down syndrome that is presented to you as “fact” when you are expecting a baby with Down syndrome. The prejudice Betsy experienced before birth continued in the years that followed and still exists today. There is a danger in the question parents are continually asked by healthcare staff, “What is normal for your daughter?” How do I even begin to unpack this? I understand that parental perspective is vital to triage and we can provide information on our children that is unique in nature. Yet, this question can lead us down the route of ignoring symptoms, treatment being delayed or withheld and our children ending up doing poorly as a result. When you care for your child for 24 hours a day, 7 days a week changes that happen, for example to respiratory function, happen gradually. We might not necessarily notice the change and therefore the new level of breathing becomes normality. An example of this is that Betsy has ended up in A&E many times with chest infections that have become severe. Following advice that chest and neck recession is emphasized by low muscle tone, caused by Down syndrome,  and can appear worse than it represents inherent bias. This is disregarding a symptom and passing it off as a result of the condition. This is diagnostic overshadowing. It is particularly dangerous and has led to Betsy developing pneumonia in the past after a chest infection went untreated too long. The same applies to only allowing her oxygen if her levels fall below 88, when the national recommendation is 92 or 91. One particular incident was when Betsy was refused oxygen by the hospital when saturating at 88 constantly. This was because she had a respiratory infection. I asked the nurse if she could administer oxygen when Betsy’s levels fell to 90. I had been concerned that her oxygen monitor hadn’t alarmed and called for help, where I was informed it would only alarm if she fell to 87. I asked if this was policy? I believed it was 92 from her last admission. The nurse said it wasn’t and she didn’t understand why the decision had been made to do this. She said she believed Betsy would be experiencing a headache and chest pain as a result. She made the decision to treat Betsy with oxygen and went away to inform the consultant. She then returned and turned the oxygen off, saying she was not authorized to give it. She apologized to me. After raising a complaint, the consensus from the hospital was that children with Down syndrome saturate lower and they believed Betsy would end up “stuck in hospital” on oxygen if they allowed her to have it in the same way other children do. In reality, Betsy’s oxygen saturation is completely unrelated to Down syndrome. She had a respiratory infection which is why they were low. When she is well, Betsy breathes perfectly well and saturates at 98/99! This is also diagnostic overshadowing. As a result, Betsy was subjected to days of hypoxia. She suffered the effects of a bad respiratory infection without supporting oxygen. It is her human right to access the same medical care as everyone else. It is exhausting to relive and write out each incident of inherent bias Betsy has been subjected to within the NHS. I haven’t even touched upon many areas. I could write a 10,000-word dissertation on the past three years if I had the time. My point is that the government response to the LeDeR report of 2020 that highlights the importance of addressing bias within the NHS is a reality in our lives. We are constantly on guard. We double-check the treatment she is prescribed is in line with policy. We have the learning disability team on call. We question. We find it hard to trust healthcare professionals. We carry a hospital passport with relevant human rights legislation detailed on it so we are prepared in the event of Betsy needing treatment. We would like the luxury of knowing that our daughter will be treated with respect, have her dignity upheld and be given access to the same medical care as everyone else, regardless of her having Down syndrome. Betsy is a human being who requires you to treat her as an individual, not as representative of historical medical assumptions about Down syndrome. She requires you to take a step back and assess your own views on Down syndrome. Ask yourself where you got those ideas? Is your view of the condition informed by outdated medical information, historical prejudice and/or people who have no true understanding of it? Is it based in equality? Do you talk about the condition first and then the person? Do you have limits in your own mind of what you think that person can achieve? If any of these apply, you may need to accept that you have biases you may not even be aware of. We’re all a product of the society we grew up in, and that was a society where people with Down syndrome were locked away in institutions and given fewer rights than animals. It takes perception, evaluation, and the willingness and courage to accept that your own mindset is not right. It takes a big person to admit they need to change their way of thinking and improve their practice. Be brave. Challenge your own perceptions. Change your behavior. Let us all work together to address the “glaring inequalities” people with learning disabilities experience. Betsy deserves better.

    Community Voices

    PICS (Post Intensive Care Syndrome)

    I’m not crazy!” I shouted. “I’m just…..tired.”

    I had been sitting in the backyard of my rehab group home, talking to one of my caregivers. I was telling her about how I just felt like “ending it”, and she, being devoutly religious, took exception. I took exception to her response and well…

    The point is: I was TIRED. Tired of being stiff. Tired of being sad. Tired of being incontinant. Tired of being confused, weak, contractured, forgetful, depressed, angry, out of breath, unable to sleep. And, yes, tired of being tired all the time. I was experiencing these symptoms as a result of my long period in the ICU and CCU and then bed-confined hospital stay, all with very little to no attention paid to my #MentalHealth, and only peripheral attention paid to my cognitive health.

    Every year in Canada, over 200,000 people are admitted to the ICU. While the care we receive in the ICU for our acute physical afflictions is usually very good, our mental health and cognitive function are often glossed over. As a result, many people develop PICS.


    In 2010, the Society of Critical Care Medicine recognized the long-lasting dysfunctions related to critical care, and they developed the term Post Intensive Care Syndrome (PICS). PICS is a group of health problems that are a result of ICU internments and extended hospital stays. These health issues fall into three main categories: physical impairment, cognitive impairment, and psychiatric impairment. They begin in the ICU and can persist for years after, even appearing “out of the blue” after having left the ICU. 50% of patients who had sepsis, ARDS, multi-organ failure, or prolonged mechanical ventilation develop PICS. And yet, there are so few treatments and resources available to PICS sufferers in the hospital, let alone out in the community.


    PICS symptoms fall under three main categories: Physical impairment, Cognitive impairment, and Psychiatric impairment. Here is a list of possible symptoms:


    • ICU-AW (ICU-Aquired Weakness)

    • Fatigue


    • Respiratory dysfunction

    #Scoliosis and joint contractures

    • Multiple falls

    • Slow movements


    • Memory loss

    • Inattentiveness

    • Sluggish thinking

    • Behavioural control issues

    • Problem-solving issues






    • Nightmares

    • Persistent delusional thinking


    ICU-AW may be a result of deep sedation and prolonged immobility, as well as inflammation and infection. Prolonged immobility is also the likely cause of joint contractures that can result in life long #Disability. Mechanical ventilation may result in decreased lung function for months or years after release.

    The main risk factors for cognitive impairment are sepsis, #Delirium, and ARDS. Other factors may include poor oxygen or blood supply to the brain, and a compromise of the blood-brain barrier.

    It is more difficult to determine what causes psychiatric impairments in patients with PICS. Risk factors include sepsis, ARDS, #Hypoxia, #Hypoglycemia, respiratory failure, sleep pattern disturbances, deep sedation, prolonged immobility, and isolation.


    The key to preventing and treating PICS is early intervention. The earlier, the better. Here is a list of methods and practices to prevent PICS:

    • EARLY MOBILIZATION: Passive exercises while the person is confined to bed goes a long way in preventing joint contractures. Having the person sit, stand, and walk as soon as possible, even with a ventilator, is helpful in preventing ICU-AW and many other physical and cognitive impairments…

    • HYGENE: Regularly bathing the person, washing their hair, and cleaning their teeth and mouth all help in improving their mood and self image.

    • ICU DIARY: An ICU diary can help people record and sort through thoughts, emotions, delusions, etc. It can be a helpful tool in working with psychiatric and counselling staff to prevent psychiatric impairments

    • LIMITING DEEP SEDATION: Helps prevent ICU-AW, PTSD, and dementia

    • LOVE AND ATTENTION: One of the most important things loved ones can do is simply be with the person. Talk to them, sing to them, read to them, play music, touch/massage them, listen to them, help them communicate with you, assist in their physio. All of these things can help stave off PICS

    • NATURAL LIGHT: Light can affect our mood, concentration, decision making, and sleep, Making sure there is a window visible from the person’s bed and taking them outdoors whenever possible is important in preventing psychiatric and cognitive impairments.

    • NUTRITION: Adequate nutrition is important in preventing physical, cognitive, and psychiatric impairments.

    • PHYSICAL/OCCUPATIONAL THERAPY: Taking proactive steps can greatly help improve a person’s mood, strength, and cognitive acuity. The sooner they begin to take these steps in their recovery, the sooner they will heal, and the sooner they will be released, reducing the risks associated with PICS.

    • PSYCHIATRIST/PSYCHOLOGIST: The earlier a person can work with mental health staff, the less likely they will develop psychiatric impairments

    • SLEEP HYGENE: Controlling factors such as time of sleep, light, noise, and interruptions creates a better quality of sleep, helping to prevent cognitive and psychiatric impairments

    • SPEECH THERAPY: Working on speaking, singing, facial muscle control, memory, and concentration help to improve physical, cognitive, and psychiatric function


    Loved ones and caregivers of ICU patients may develop PICS as well, resulting in depression, anxiety, , and feelings of loneliness and isolation.

    Here is a list of things you can do to prevent PICS-F:

    • Bathe regularly

    • Get enough rest

    • Eat regular healthy meals

    • Exercise

    • Keep a journal or diary

    • Educate yourself

    • Ask questions

    • Seek counselling services

    • Talk with other loved ones


    25% of ICU survivors develop ICU-AW. Up to 80% develop cognitive impairments. 60% of ICU survivors develop psychiatric impairments that can last for years after discharge. And half of all ICU patients still require some care after leaving the ICU. While there are several options to treat the symptoms, there are still so few hospital practices and protocols in place to prevent PICS. Remember, the goal is prevention through early intervention. And for that, we need awareness. So reach out, share your stories, educate yourself, and pass it on. Knowledge and understanding may prevent someone else from suffering from PICS

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    Community Voices

    #Gastroparesis #raynauds #Hypoxia #PVCs #Anemia . #pottssyndrome #EsphogusDismotility #GERD #hashimotos #Hypoglycemia #Migraines #ReactiveAirway #HiatalHernia #So MuchMore....= #autoimmunecringeworthy ... that's how I feel anymore.
    Yet with still with so many saying I look "so great!!" on the outside (well meaning, of course,) it's a common thing said to me / people with an auto immune, Scleroderma, chronic illnesses.
    But I find explaining myself now that my "problem list" is SO LONG that I almost feel like I AM the nightmare.
    The problem.
    It's cringe worthy.
    And isolating.
    And lately,
    Anxiety producing, which is
    something new.
    I can't put my finger on the pulse of what I'm anxious "of" exactly, but the "feeling" is flat out horrible.
    When I go to a specialist they want me to stay "in their lane" only = i.e. not discuss anything other than what they specialize in.... This becomes difficult when your disease affects so much (see list above) h
    If I get told a new diagnosis, (like recently one of, #Gastroparesis ) after so many other diagnosis's, it wasn't so much surprsing or earth shattering as it was worrisome...
    The conversation was short.
    Will we ever talk about it again?
    Is that it?
    Do we move on?
    Is it now another word on my list?
    And I say that kindly as my Dr's are great. But you see what I mean?
    "What now?"
    He goes to another patient.
    I have another Dr's appt.
    Did that happen? Matter?
    On the outside, I look exactly the same. Internally obviously "we" know the "drill"... I asked "is there a cure?" "no, no there is not".
    But I get explaining this messy situation I am living or sharing it or talking about it to people would be probably odd.
    But right now as I may be a #Auto ImmuneNightmare on the inside and appear ok on the outside. I'm actually feeling #Anxiety and #Uncertainty & I wonder about all the different diseases /diagnosis's progressions.
    But I guess these #Thoughts come with the territory.
    Thanks for listening.

    4 people are talking about this