Eileen Castine

@eileencastine
support
Community Voices

Too many health issues at the same time. #overwhelmed

I have myotonic dystrophy. It's systemic, affects everything in the body but it's unusual that one person has all symptoms.  I have several though.  I have gone to a gyno who diagnosed me with the thickening of the uterine lining.  In MD, there is twice the likelihood of developing uterine cancer, so I am dealing with that.  Because I have a weak respiratory system, I have to get clearance from my pulmonary doctor and also my cardiologist.  My ECG came back abnormal saying I could have possibly had a heart attack in the recent past.  The past week, I have been walking barely able to keep it together until I get home from work, then I just cry.  Don't know what I really need.

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Denise Reich

Not Only Elderly and Immunocompromised Will Be Affected by COVID-19

By now, most of us know the worldwide threat of COVID-19, a new strain in the coronavirus family. Information about the virus, new cases and new testing and containment protocols are being released to the public every single day, piling in from sources ranging from the World Health Organization (WHO) to local news channels. While it’s incredible that we have immediate access to COVID-19 updates, there’s one big problem with the way the media has been covering the outbreak. We have reporters, social media influencers and other public figures trying to reassure us that we’re probably going to be fine — well, most of us anyway. All of us except the elderly and immunocompromised. “Don’t worry,” they say. “Wash your hands and carry on,” they advise. “You’re young, it’s not like you’ll die or anything! It’s just the elderly and people with compromised immune systems that will be affected!” As if people in those groups don’t matter. People like me. I have primary immunodeficiency. Hi. I won’t lie, COVID-19 concerns me, just as it concerns my neighbors and friends who have stronger immune systems. Luckily, the infection control procedures recommended to the general public — things like thorough and frequent hand washing, covering one’s mouth when sneezing and cleaning surfaces that are frequently touched — are standard operating procedure for a lot of people like me. I didn’t need to raid my local store for hand sanitizer and bleach wipes because I already have a cupboard full of that stuff. I’m doing my best to remain vigilant, keep my doctors’ appointments and avoid crowds. As of March 4, the Immune Deficiency Foundation’s stance on COVID-19 has been to provide factual information and encourage vigilance without inciting panic. Many other advocacy organizations for patients with respiratory or immune system conditions, such as the British Heart Trust and the American Lung Association have issued similar advice. The WHO and CDC are also quick to give advice and guidance on COVID-19 issues and acknowledge that some populations may be at greater risk without diminishing the fact that COVID-19 is not just an issue for those groups. Unfortunately, it doesn’t seem like a lot of news outlets are following this sound practice. They’re going on about how only “old folks’ homes” and “sick people” will be at risk. When did it become acceptable to comfort the public by reassuring them that “Hey, you’re not the one who might die”? Or to assume that it will all be cool because only “those people over there” will have issues? Aside from the fact that it’s actually not true — being healthy doesn’t grant anyone guaranteed immunity from potential complications — have they considered, even for a second, that those “old folks” and “sick people” are listening, reading or watching too, and don’t deserve to have their lives considered afterthoughts? Instead of shrugging off more medically vulnerable populations, has it ever dawned on any of these pundits to offer some advice to help? You know, like telling people with robust immune systems to be especially careful because they could still pass COVID-19 to an immunocompromised person? Or insisting that public facilities be proactive about ensuring their restrooms are cleaned often and always stocked with soap and working faucets? How about advocating for more sick day coverage and fewer repercussions for workers who need to take time off to avoid spreading COVID-19 or other illnesses? Or reminding people to check on homebound neighbors and relatives? You can reassure the public about COVID-19 without throwing some of the public under the bus. Really, you can. Please make the effort. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

Community Voices

Antidepressants

I just read a friends post about how antidepressants do not help and may actually cause suicide. They have helped me a lot. Of course this person doesn't use them. I don't know how to respond. He cited some study but it seems like such an ableist thing to post. He also said they are not good for anything. #Ableist #Antidepressants

Why People Who Are Chronically Sick May Post on Facebook

Nobody is “normal.” Everyone is unique. That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body). And the places in your mind that change can be impossible to perceive; what is caused by the physical (hey come on, literal viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me, even with the deepest introspection, lines are blurry). So when you are in this bubble of misery and feeling desperate, many of us reach that crossroad decision of whether to reach out publicly or not. Now, some do so all the time and some seldom do so. I want to share with you, the healthy person, the “normal” person, what may be going on in our heads and where the need to reach out comes from. Because to you, (sometimes frequent) posts regarding how someone is feeling physically and mentally can come off as: Desperate Attention-getting Overly dramatic Whiny Ungrateful Lacking faith Hypochondriac Lacking strength Emotionally unstable Or “_____” fill in the blank And honestly maybe some people with chronic illness are. But I am asking you to consider grace, and here is why: Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You do stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, and your life may not be perfect or exciting, but it is full. One day your body starts to betray you. Suddenly all the daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear Earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years. You start sleeping a lot more, so much more that you start to feel guilt over your “laziness.” Even after a full night’s sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse, you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge. So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago. Oh, and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain. Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bedtime and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep… Now it feels like that all the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle. Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you can’t seem to formulate articulate conversation. As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse. You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward. Your world grows smaller. As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy. At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!” you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…But slowly friends start to drop away, check in less and less, and stop inviting you to things because they know you will just say “no.” Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time. You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life. Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You may feel desperate and sad and lonely. Since you don’t see people in person so much anymore you might reach out to your friends online; both your real-world friends and your friends who you met in chronic illness forums and such. So I am speaking to you, “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention,” talking about what they are going through very publicly, and (sometimes) going into TMI territory… know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were. They may post because: They want fellowship, They want friendship, They want to both hear and be heard, They need a sounding block, They want to feel normal, They don’t want to disappear and be forgotten, They want to have a glimpse of normalcy and online may be all they have, They don’t see people much face-to-face so “Face”-book is their life. Hear me now as I write this for my sick brothers and sisters: Everyone needs people! When you are sick and isolated, online is your people! I don’t believe we are grand-standers or attention getters (at least not most of us). I think we are people just like you whose lives have changed and been shaped by illness and circumstances. All we want is to be normal and healthy. We may covet the little things that most people take for granted, even just taking a walk on a sunny day. One more thing I want you to know: Worry about the chronically ill people who don’t post and instead stay quiet. They may be experiencing everything the communicators are but internalizing their pain versus reaching out. It’s about having an outlet, versus internalizing everything. Isolation, versus reaching out. Honesty, versus putting on a happy face. I have seen too many of the “quiet one’s” obituaries online. Please also know the anxiety a person may go through on what to post and what not to post. It is so hard to judge because (especially) on a bad day, perspectives may be askew… and the reactions from people can also vary greatly. You get the positive feedback from the chronic illness community: “Thank you so much for sharing, I am not alone.” “So glad to hear another person’s perspective.” “Thank you for being honest and blazing a trail for others that will come behind you.” This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of pain. But, you also may get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you may get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you. In closing: why am I posting this? I will tell you it’s not for attention or sympathy. I want to give a voice to the silent struggling ones. I want to advocate for those whose families don’t believe them. I want to open a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member. So consider grace and understanding first when encountering someone who has been struggling for a long time. We have so much to learn from each other. We want to hear your story. Become a Mighty contributor here .

Jordyn C.
Jordyn C. @jordyn17
contributor

Fighting the Fear of Disability

I read a post the other day where someone was speaking about how ill equipped the world is for people with disabilities. Talking about how we are expected to deal with incomprehensible pain and suffering because the healthcare system cannot handle us. Then I see articles floating around about how doctors are pushing “pain acceptance” and the like. The world does not like that we want to be treated humanely. They do not know that we have already accepted our pain, but decided to do something about it. We have a voice. The extent of the lives of those who live with any condition often comes down to the fact that we have said condition. We always know it is there, so in a way we are defined by it. Defined by it because it changes our lives. However, most of us choose to lead lives of joy and make the best of our circumstances. We live because the only other option is to wallow in the death of our old lives. My mom recently had a benign brain tumor removed. It was a horrific experience with a lot of complications. She is healing now and doing well. The funny part to me is that she is super concerned about coming across as “disabled” or “slow.” It is ironic considering that her child, me, has chronic physical and mental health conditions. So what if she comes across as “disabled” (which she does not). I am disabled. Why is she so worried, so terrified of being disabled? It is like disability is a death sentence to those who have never had to experience it personally. They do not want to be associated with it in any way. Sure, it’s fine if a family member is “disabled” because that’s their own problem, isn’t it? I believe this horrible mindset we as a culture have about disability is why we have so many inaccessible buildings, disapproving doctors and no access to helpful medication. Why? Why are we so often ostracized, even from the ones we love? I personally do not understand the mental view that comes when thinking about disability. We are warriors. We fight like heck everyday, but to the outsider, we are something to be avoided at all costs. On the rare times I complain about my disability, my mom tells me, “it is what it is.” So it is my burden to bear, but everyone is going to make it as difficult as possible? It just does not make sense. When I have to go over my diagnoses at medical appointments, she tells me she forgets everything I deal with every day until it is listed out. I feel like it is my fault that she forgets, because I choose not to complain, even when she complains about her temporary problems. I choose to suck it up and make the best of the life I have. So when people talk about disability like it is the plague or tell us just to “accept” it, I want to scream. Most people with disabilities already do this. We already know this. However, we also know that we have just as much right to get quality treatment as anyone else. We have just as much right to be looked at as a person, not a label on a chart. I am not a disability. I am an individual. Please remember that.

Amy Rheaume

Grief: A Side-Effect of Chronic Disease

Reaching acceptance of a new normal is often the most difficult hurdle to clear when coping with chronic illness. This is not surprising when one of the most frequently overlooked struggles we spoonies face, and what our doctors most often fail to tell us, is that we may experience a period of grief. Yes — I said grief, the same grief that occurs with the loss of a loved one. There is a reason for this: Quite simply, you have lost a loved one — you have lost you ! You have lost the person you used to be and therefore may feel you have lost your sense of identity. You may have lost your social structure due to the inability to keep up with the activities of your church, your job, and even your circle of friends. You may need to change your living situation if you can no longer work resulting in a loss of the comforts of home. You may even lose the support of relationships you depend on if those individuals fail to recognize your chronic condition. The result of these escalating losses, if not addressed and managed alongside the medical treatment of your chronic condition, can lead to additional complications such as depression, anxiety and maladaptive coping mechanisms. This, in turn can result in increased pain, further loss of motivation, increased fatigue and additional changes in sleeping or eating patterns all of which make managing your chronic illness even more difficult. The result becomes a self-reinforcing, vicious cycle of intensifying symptoms and negative emotions. But you are not told about this in the doctor’s office. You are not told that you should expect to feel the disbelief, denial, anger, guilt and overwhelming sadness of grief. You are not told that these emotions are normal. You are not told that you need to work through these emotions or how to handle the perfect storm of emotion that inevitably will affect your symptoms. The scary truth is that after receiving a diagnosis you may experience the emotions of grief over several weeks, months, or even years. You will likely move between the varied emotions — or stages — of grief resulting in periods where you accept your illness, other periods where you rage against it, and even others where you are stuck in a fog of despair. The even scarier truth — this, too, is all normal. The undeniable fact is that you must grieve for the person you were so that you can move on and accept the person you are. This process may feel like yet another battle you must wage, but it is a battle you can win. More importantly, it is not a battle that you have to wage alone, either. Grief counselors can be very effective in assisting us through the process of grief. Having an open and honest dialogue with your doctor about your emotions and the grief you are experiencing can open the door to treatment options that may have otherwise remained closed. Online and local support groups can offer the emotional encouragement that may be lacking. It will take time, but like all grief, the days will eventually brighten, and the fog will eventually lift.  What is important to remember is that, even though you were not told this ugly truth, what you are going through is normal, and you can work through it.

18 Things People Affected by Neuromuscular Diseases Wish Doctors Understood

Neuromuscular diseases and disorders affect the nerves that control voluntary muscles, and over the course of time, the disconnect between the nervous system and the body causes muscles to weaken. An estimated 1 million people in the U.S. have some form of neuromuscular disease, and about 40 percent of them are under age 18, according to the Muscular Dystrophy Association. Muscular dystrophy and ALS are among the most common neuromuscular diseases, but even with the amount of research and awareness campaigns, most of these diseases still don’t have cures. On top of that, many patients with neuromuscular diseases, along with their family members, have expressed their frustration with the lack of knowledge among doctors. *Sign up for The Mighty Newsletter* So The Mighty teamed up with the Muscular Dystrophy Association to ask their Facebook community what they wish medical professionals understood about neuromuscular diseases. Here’s what they had to say: 1. “We are not a textbook case. Each one of use is different.” —Debbie Furgason 2. “Just because we look healthy on the outside doesn’t mean we’re feeling good in the inside.” —Jessica Jamison 3. “For me being a sibling, I would like doctors to remember that the whole family is dealing with muscular dystrophy.” —Allison Beaumont 4. “We have pain and are not after drugs for the hell of it.” —Becky Pierce Jones 5. “Listen to patients.” —Valerie Weaver 6. “Don’t blow a patient’s complaints off.” —Joanne Mims 7. “Don’t act like I’m wasting your time. Have more info on the type of MD I have instead of looking in the medical book.” —Julie Anderson 8. “I am the one who cares for my child 24/7. Therefore I do know what I am talking about, and I do know what my child needs.” —Trish Ehrenfried 9. “Don’t assume you know how his physical disability affects him socially or emotionally, but don’t discount that it does have an impact.” —Tina Riley 10. “It is an economic disaster on the entire family.” —Debbie Thomas 11. “This is a medical profession, not a paycheck.” —William England 12. “When dealing with a new doctor, I need them to understand that yes, I can talk medical terminology.” —Brandi Vozsnyak 13. “Give patients more information because sometimes we don’t understand what is happening to us.” —Christopher Parsons 14. “When my doctor finally gave me the ALS diagnosis, he would not look up from his shoes. Doctors need to learn how to give a diagnosis as part of their training.” —Pierre Lescure 15. “Parents and patients today need open dialogue throughout all of the diagnostic appointments.” —Maggie French 16. “Doctors, please continue to follow your instincts and advocate to help families find answers.” —Becky Rovenstine 17. “We didn’t ask for MD, but we have it and we have to live with. Help us manage it, listen to our concerns, especially when there are no clinics within a 10-hour drive. You are our resources.” —Marjorie Martinez-Langdon 18. “Understand that anyone at any age can have MD.” —Greg Brown For more information, be sure to visit the Muscular Dystrophy Association’s website and Facebook page. *Some responses have been edited and shortened for brevity and clarity All images via Canva