Blog

The Mess We’re In And Some of The Reasons Why

COVID-19

By now, all of you reading have been in the thick of quarantine, social distancing, and working from home. Some of you have been furloughed from your jobs; you are home, juggling home-schooling, conference calls from the kitchen table while your children are trying to do schoolwork in the living room as your youngest ones are scrambling around the house without their nappies on while belting out their finest renditions of “Let it Go!” If you are one of the brave nurses and doctors working in the hospitals; if you are in emergency services or work in the healthcare industry, you are on the frontlines, battling the unseen enemy. You are witnessing the effects of this virus up close, and personal, putting your life on the line every day, despite having a family or people you care about back home. Money is an issue; healthcare has been an on-going issue in this country and above all, on everyone’s mind every hour of every day, is COVID-19.

I’ve been seeing questions on my Facebook feed nearly every day from all my friends. Is there a need for all this “locking-down?” Why is there so much chaos around COVID-19? How are COVID-19, H1N1/Swine Flu, Bird Flu/H5N1 and H7N9 different/same, and why wasn’t there this severe of a reaction to those pandemics? Didn’t a lot of people, if not more, die during those pandemics? Is this just political? But I’ll get a mild cold, what’s so bad about that? These are very good questions. Questions are what prompted me to start blogging in the first place. There’s a lot of information out there, but the information isn’t something everyone can understand when it’s a subject we’re not familiar with, and disease is something I am familiar with. As I’ve talked about in my blogging, but not necessarily to any of you who might be new at reading this, before autoimmune disease and chronic illness took over my life, I was studying to pursue a career in Public Health. I am rather obsessed with diseases; so, when this outbreak began in Wuhan, China, I was already following it and I knew it was going to be bad. The difference between what you will read here and somewhere else is that I won’t make it overly complicated. I’m not writing for a doctorate. I like being able to translate things in a way everyone can understand and relate to. Here we go.

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The first thing we are going to tackle: How are COVID-19, H1N1/Swine Flu, Bird Flu/H5N1 and H7N9 different/same? As I write this, according to Worldometers, the U.S. currently has 123,750 cases of coronavirus, there have been 2,227 deaths, and 3,231 recovered. Globally, there have been 663,740 deaths, 30,879, recovered, 142,183; the mortality rate, according to the WHO, of 3.4% (as of 3.3.20). Now, with seasonal influenza, the CDC estimates in the United States from October 1st, 2019 to March 14th, 2020: 38,000,000 – 54,000,000 flu illnesses, 17,000,000 – 25,000,000 flu medical visits, 390,000 – 710,000 flu hospitalizations and 23,000 – 59,000 flu deaths.

Coronavirus vs Seasonal Flu

Seasonal flu aka influenza happens every year worldwide. It’s not a notifiable disease so it doesn’t have to be reported to authorities, which means the CDC numbers are estimates. Most with mild symptoms don’t even go to the doctor. Current estimates put CFR at 0.1% (Case Fatality Rate). There’re an estimated 3.5 million cases of severe flu each year and 250,00 – 500,00 deaths worldwide. In most industrialised countries deaths mostly occur in people who are 65+, otherwise, it’s dangerous to pregnant woman, children under 59 months and people with chronic medical conditions. Getting your annual vaccine reduces transmission and serious complications in most developed countries, however, it is still an accepted part of every winter.

“How the coronavirus compares to the flu thus far: 1.) It has resulted in fewer deaths so far. 2.) It has a higher CFR. 3.) No vaccine. 4.) It is more widespread.” Corona Virus Compared to Other Outbreaks

Corona Virus vs Bird flu (H5N1 + H7N9)

There have been multiple outbreaks of bird or avian flu over the years; most recently in 2013 + 2016. These are typically from two different strains; the H7N9 virus and H5N1 virus. The H7N9 epidemic in 2016 made up a third of all human cases reported but was still limited compared to both the coronavirus and other outbreaks/pandemics in this list. There have been 1.233 lab-confirmed cases of bird flu since the first epidemic. While the rate is very high, the spread from person to person is limited, which in turn reduces the number of associated deaths. FutureLearn

“How the coronavirus compares to the bird flu thus far: 1.) It is more widespread. 2.) It is more easily spread via human to human contact. 3.) Has lower CFR 4.) Has resulted in more deaths overall 5.) Has moved further from the source.” Corona Virus Compared to Other Outbreaks

But I’ll Get a Mild Cold? What’s So Bad About That?

What we’re hearing about this virus can be very deceptive. Such as Only those 65 yrs and above are having serious symptoms that have been leading to death. Because we’re also hearing now, as the virus spreads farther and faster, that more young people within the ages of 22-49 are also experiencing serious and fatal symptoms. Example: A young boy, 17 years old just passed away in Louisiana. No underlying symptoms. A young person, under the age of 18, passed away in Los Angeles County. Reminding everyone of the very real danger of this virus to those young and without any underlying ailments. What does this mean or could this mean? It’s still rather puzzling. But what is clear it the critical role of the immune system and the part it plays in whether or not you can and will recover from COVID-19.

It all begins on the entry of the virus. Very different symptoms emerge depending on where in the body the virus takes hold. This is how your immune system reacts. Novel coronavirus gains entry into a cell by latching on to a specific protein called the ACE2 receptor that sits on the cell’s surface. These are most abundant in the lungs, which is why COVID-19 is considered a respiratory illness. The second-highest number of ACE2 receptors are in the intestines, which could explain why many people experience diarrhea. The goal of the innate immune system is to contain and prevent the virus from replicating. The adaptive, virus-specific immune system sweeps in as a second wave defense to handle what’s left, having virus-specific antibodies and T-cells that the body develops that can destroy the virus more quickly. It’s these antibodies which provide immunity and protect people from becoming re-infected with the virus after they’ve already had it.

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In some people, whose environments expose them to huge amounts of viruses, such as those in the healthcare industry, you will have instances where the virus will replicate and spread rapidly before the immune system has had the chance to beat it into submission. These folks can acquire a more severe infection even if they are young and healthy. The more virus the body is flooded with the more difficult it is for the immune system to manage. Older people will be less effective at fighting the virus as the immune system naturally declines with age and therefore will be more vulnerable, as will people who are immunocompromised because of another illness or medication. A suppressed immune system can result in the delay of antibody response. This delay allows the virus to swim through channels unchecked and unchallenged, to spread from cell to cell. If it takes up residence in your lungs it can progress to pneumonia, as more cells become infected. This is partly the virus, but even more so, due to the immune system itself in a seek and destroy mode as it tries to get rid of those infected cells.

The Difference Between Swine flu/H1N1 and COVID-19 and the Differing Reactions

Between Spring of 2009 and Spring of Spring of 2010, we saw the emergence of H1N1 infecting as many as 1.4 billion people across the globe; killing between 151,700 + 575,400 people according to Centers for Disease Control. CDC Flu Pandemic The 2009 pandemic was caused by a new strain of H1N1 that originated in Mexico in the Spring of 2009 before spreading to the rest of the world. By June there were enough cases that the World Health Organization declared the Swine flu outbreak a pandemic. In the U.S. between April 2009 + April 2010 the CDC estimates there were 60.8 million cases of Swine flu, with over 274,000 hospitalizations and nearly 12,500 deaths- that’s a mortality rate of about 0.02%. Here are some of the differences that brought such different reactions between the two.

 

  • The 2009 Swine flu primarily affected children and young adults and 80% of the deaths were people younger than 65. It seems while this is unusual, with even the seasonal flu causing the most deaths in people over 65, in the case of swine flu older people seem to have built up immunity to the group of viruses H1N1 belongs to. So not as many were affected. LiveScience I often hear this butchered a lot in the explanation and the understanding, so I am hoping to explain it in a concise way that eliminates the confusion and mysticism surrounding it. There is typically some herd immunity to the seasonal flu. This means that many people are immune to the infection because of vaccines or their immune system has already fought the infection so that the few people who aren’t immune are somewhat Herd immunity is NOT a guarantee for everyone to be protected. Now, with COVID-19, there may be some groups of people who have immunity to the virus, but it’s an area that is still being researched. So far, COVID-19 is most deadly for those over 60 who have underlying health conditions. However, even as I write this, we are seeing those numbers change and we are seeing the vulnerability of those between 22-49 with no apparent underlying illness. FutureLearn

 

  • Flu viruses are spread in respiratory droplets and airborne particles. Although the COVID-19 virus is primarily spread through respiratory droplets, it is in some cases shed in feces. It is yet unknown how important the oral-fecal route of this infection maybe, but you can’t be negligent in your hand washing. Wash your hands often and wash your hands for as long as you can make time for, following up with lotion to combat dryness.

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  • Symptoms with COVID-19 may be mild, and some persons may not experience any symptoms at all. The incubation period is between four and fourteen days which means a person could be carrying the virus for up to two weeks before experiencing the illness. Comparably, symptoms of Swine flu are similar to those caused by other viruses: fever, cough, headache, body ache, sore throat, chills, fatigue, and runny nose. Symptoms show up between 1-4 days after contracting the virus. LiveScience

 

  • Still learning the full breadth of symptoms with COVID-19, clearest data seems to show that first signs are: fever, dry cough, shortness of breath. Other symptoms include headache, sore throat and abdominal pain, diarrhea. These have been reported but are less common. As with flu, COVID-19 can cause respiratory issues that lead to serious problems, such as pneumonia. CDC COVID-19

 

A Few Differences in the Way the U.S. Has Responded to the COVID-19 Pandemic vs the Swine Flu Pandemic

  • “We were better prepared (at least in the U.S.) years ago,” said Steffanie Strathdee, the Associate Dean of Global Health Sciences at the University of California San Diego’s Department of Medicine. LiveScience

 

  • With both pandemics, the genetic sequence of the virus was released to the public at incredible speed so that countries could create diagnostic testing ASAP. On April 24th, 2009, just nine days after initial detection of H1N1, the CDC uploaded the genetic sequence of the virus to the public database and had already begun development of a vaccine. Similarly, on January 12th, 2020, five days after the novel coronavirus was isolated, Chinese scientists published the virus’ genetic sequence. But that is where the similarities stop. It’s been a fairly bumpy ride for COVID-19; nothing has happened as fast or as smoothly. Making it a very dark and uncertain time for everyone involved.
  • The 1st COVID-19 case was identified on January 20th by the Department of Health and Human Services. Eleven days later it was declared a public health emergency by the Department of Health and Human Services, on January 31. With Swine flu, a public health emergency was declared just two days after the first confirmed case in 2009.

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  • Within four weeks of detecting H1N1 in 2009, the CDC had begun releasing supplies from their stockpile that could prevent and treat influenza and most states in the U.S. had labs diagnosing H1N1without verification by a CDC test. None of this was seen as the COVID-19 threat blossomed. Instead, we saw an administration balk at the idea that it would be a threat to the American people at all, and shake their heads that it would come near to being the same kind of problem as China or Italy.

To make things worse, the continued hiccups and theme, surrounding the COVID-19 diagnostic tests continued. On February 5th, the CDC began sending diagnostic kits for COVID-19 to about 100 public-health laboratories across the country. Most labs received faulty kits which caused a major delay in combating the virus. Testing had to continue exclusively at the CDC headquarters until the agency could develop and send out replacement kits. This meant that COVID-19 continued to spread undetected for weeks.

The FDA commissioner announced on February 29th, that the agency would allow labs across the country to test for COVID-19 with their lab-developed tests without prior approval as long as they took basic steps to validate the tests and submitted an “emergency use authorization” (EAU) app before 15 days. LiveScience

  • This is the first pandemic of the social media age. Talk about misinformation! It spread faster than the disease as has the blame for the disease which has led to an incredible amount of hate on social media. Only unity to fight the disaster will ultimately win against it.

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  • The plus side to the technology age is the speed with which research and vaccine development can occur. Potentially treatment and the first trial of candidate vaccine are already underway. This is very encouraging light at the end of this very, dark tunnel.

The Need for Lockdown

There are many reasons and needs for a lockdown. I could probably write an entire article just citing those, but we’ll stick to a few of the major ones.

  • While the vast majority of those who contract the illness may only feel mild symptoms, there are going to be those over 60 who are at greater risk, those (younger or older) with underlying illness, who are going to be at greater risk, and those, who for no reason at all, may experience this virus worse than the rest. They are going to flood the hospitals. They are flooding the hospitals.
  • This means that elective procedures are being eliminated. This means that people who may have accidents, sudden heart-attacks, car accidents or any other serious injuries that require hospitalizations, may find themselves in serious trouble. Why? First, there may not be enough beds. Second, you may be exposing yourself unnecessarily to the virus by going into the hospital. Remember what I said about doctors and nurses and viral overload? You don’t want this to happen to you while your immune system is down or in shock from an accident, illness or sickness.

 

  • Asymptomatic spread. This is my opinion, as is the whole of this article, but I truly believe that the cases of asymptomatic spread could be making the epidemic more difficult to control because these patients would be spreading the virus with no visible symptoms themselves. “A study in Science, of the early days in the outbreak suggests that those with mild or no symptoms accounted for 86% of infections. With high numbers on their side, the hidden cases became the source for almost 80% of the diagnosed infections.” sciencenews

 

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Are We Over-Reacting to COVID-19?

In my head that’s a pretty slam dunk answer- no! No matter what statistic is out there, for how many the flu kills each year globally as compared to COVID-19 when it comes down to it, we don’t social distance for the seasonal flu. Some don’t vaccinate for the flu because they are afraid it will harm them. Some don’t wash their hands regularly. Have you thought about how different the flu might be if you practised social distancing, washed your hands regularly, didn’t handshake, and got your vaccine? Maybe the numbers would be much lower and maybe it wouldn’t be an accepted part of winter. This pandemic won’t phase out handshaking; there won’t be a sudden new trend of elbow bumping or foot taps or knee bumps. No matter how cool you might be, we’ll go back to what we’re accustomed to doing. We need a vaccine. The moment we go back to doing what we normally do is the moment that this virus attacks us again because that is what it does. It should not matter that in some people COVID-19 only causes mild symptoms. What should matter, is that we still have so many unanswered questions about COVID-19. That should be enough to motivate communities to work together to slow its progress. Marketwatch Lastly, the seasonal flu has a fatality rate of less than 1%. “Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, estimates that the flu fatality rate is closer to 0.1%. But even accounting for the mild, yet undiagnosed cases of COVID-19, he said it would still make “it roughly 10 times more lethal than the seasonal flu.”” The scenario being played before our eyes right now is apocalyptic at best, and only going to get worse with no proven therapy, beds disappearing as more patient’s flood hospitals, medicine begins to deplete and nurses and doctors succumb to the illness. It’s a grim scene that can only be compared to war. This should be reason enough to motivate any person to lockdown and save humanity. Maketwatch

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Resources

 Adding an excellent resource for terminology:

MDAnderson21TermsToKnow

** This is my opinion, based on my background and education and in no way reflects any medical advice. If you think you have COVID-19, please quarantine yourself immediately and seek medical attention. I do not claim to be a medical professional, so please do not take the information within to be medical advice.

 

COVID-19

PLS2

The Realities of COVID-19 for You and the Same Realities for Me

We interrupt this regularly scheduled blog with a word from our author:

During this COVID-19 madness, which has become the New World Order for at least for the foreseeable few weeks and which feels like we’re all living out some surreal, Quentin Tarantino movie, there are still those among us who feel that this is all a wild over-reaction to something no more worrisome than a cold. I’m here to tell you that for me, COVID-19 is something much more worrisome than a simple cold.

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As an immunocompromised person, with several autoimmune disorders, I fit within that 20% high-risk group that would find themselves in danger should they develop this illness. I’ve considered this deeply from both an intellectual perspective and an emotional one. I’ve accepted that if I were to get sick I might not be able to beat it and that’s okay. I know you’re reading that right now thinking “What the actual fuck? What do you mean you wouldn’t fight? You would just give up?” No. That’s not what I mean. What I mean is that my body is not equipped to fight this virus and gives a whole new perspective to “Survival of the Fittest” for me, and others like me. The kind of perspective that forces a wife to choose to tell her husband, “Please understand darling, I may not get through this.”

 

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I am not a soldier, but I am a soldier’s wife. And I remember when he prepared me for his deployment into a war-zone; all the potential disaster entailed and how my mind exploded with worry about a life that could potentially include one without him. How all of our future dreams could be snuffed out, and at every turn where I had always seen him by my side, he could be gone in a puff of smoke. All of this, in a cruel bit of irony, was now in reverse, and I saw that haunted look in his eyes instead and it killed me. I’m not a soldier. I wasn’t trained to go into battle; I wasn’t trained to expect or be willing to die and I wasn’t trained to potentially have to say goodbye. Having to look into my husband’s eyes and tell him that I might not make it was the most difficult, most gut-wrenching thing I’d ever had to do. But I certainly realized that day his job was much more difficult than I ever gave him credit for. I realized that no one can teach you to be ready to say goodbye.

 

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If you don’t have to be worried about Covid-19, you should count yourself lucky. If all you have to be concerned with is washing your hands for 20 seconds while singing “Never gonna give you up, Never gonna let you down, Never gonna run around and desert you. Never gonna make you cry, Never gonna say goodbye, Never gonna tell a lie and hurt you,” then life is good. If all you have to do is focus on your family, make sure they are safe and practising good hygiene, and if all those you love are not in a high-risk group, then life is cake. The maddening, hoarding or opposite, disregard and denial are truly perplexing for me, however, ultimately boils down to the same common denominator: a lack of empathy for human life other than your own. You could say this is self-preservation, but how much toilet paper is truly required for self-preservation?

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While I am very much a realist in regards in regards to this situation, I’m not a fatalist, despite my acknowledgement and even acceptance of possible death and I’m hopeful that I will neither contract COVID-19 and if I do, that I will recover. Having been through so many frightening surgeries, experienced so many difficult pregnancies and given birth to two, tiny preemies, and now, living with these autoimmune disorders and chronic pain, I’ve learnt to accept life and death without prejudice. We’re here on this planet and it’s a one-way ticket. We get to enjoy so many beautiful experiences and I have. I’ve been so incredibly lucky. I have no regrets. I’ve lived on my terms and I’ve done things how I wanted and if I didn’t make it, it would suck but I wouldn’t be angry at the universe. I want to die on my terms and with whatever time I have left, I want it to be with my family and I want it to be peacefully. But there’s still hope in my heart that all this will pass and that we will learn from it.

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Learning from this is how I want to end this. We all may have our thoughts about COVID-19, but I think it’s very important to understand that there are a whole array of possible virus and germs (new and old) out there, lurking and waiting to find a host. As you have learned, it only takes one person to start a pandemic and it can spread very quickly. Once it has spread and once it has a foothold, things become very challenging to deal with. Not only does treating the disease become difficult to manage but you have economic repercussions and citizens who begin to feel that there is not enough being done to manage a critical situation. We the people, have to implore our government of the vital importance of Public Health and making sure it is properly funded and equally so, the CDC. We need to make sure that our Healthcare system is placed at the forefront of thought and no longer neglected so that people can get more than just adequate care. COVID-19 should be a huge wake-up call for the public, the healthcare system and the science community. If people continue to deny the gravity of the situation, I truly believe this will happen again, and next time we may not be so lucky.

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You Don’t Adjust You Just Live

You’ll adjust to the pain

Five years later…

Tell me when I’m going to adjust? I don’t think there’s any way to adjust to chronic illness. I think it’s just one enormous roller coaster ride you have to brace yourself for and hope for the best. When you reach the top of one peak, you stare down and close your eyes and when it shoots down, you scream, hoping nothing will happen. You hope the car won’t skid off the tracks and that you won’t go flying out of your little, boxcar. You hope your blood pressure and your heart can take the whips and bends and the peaks and slopes. And it will never be when you expect.

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Tell me when I’m going to adjust? To the days when I feel so badly that I don’t want to move from the couch? Where getting up to fix breakfast feels like a monumental task set forth by the Gods to Hercules himself, and I’m there in his stead looking dazed and confused? When I’m feeling so lethargic in my brain as I sit down to write, that I feel like I need a cattle prod to tease my brain awake and even then, it’s yawning and stretching without any sign of life, leaving me there to stare blankly at a page on the screen wondering if I’ll be productive or not today.

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Tell me when I’m going to adjust? To the ever-multiplying issues of what began as one chronic illness, that is now eight chronic issues. How do I adjust to my life when some of these issues are progressive? When walking with a cane now, and sometimes even needing a wheelchair will mean needing a wheelchair more than needing the cane later on in my life? How do you adjust? I read something, somewhere, talking about how older people with chronic illnesses have at least been able to make memories, whereas young people have not been able to do that. But where is the line? Where is the cut off of ample memories? Have I made enough memories 35 when all this started? Or 40 when it started to get bad? Or 45 when I’ve been reduced to the cane and wheelchair when I need? When is the cut off for memory-making?

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Tell me when I’m going to adjust? To the ever-present, every increasing, pain that is in my life and that has control over every facet of my life in ways that I never dreamt of. Pain, that was once something that I dealt with on a localised basis, mainly in just my head, which was enough on its own to knock me down for two weeks sometimes, if the migraine was that bad, has now become something I deal with in multiple areas, where the pain doesn’t go away and that I live with 24/7. I never, in any terrifying dream, thought it possible to exist in the manner I find myself existing, and yet, here I am. But I wouldn’t call it adjusting. Adjusting implies that you’ve found some balance in your life with your condition and there is no balance. It’s just life on one big see-saw. You’re either up or you’re down.

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Tell me when I’m going to adjust? Friends will understand and so will family. They will adjust to your life as you know it and they will support you. Tell me when that will happen? My family, for the most part, understands, but adjust? I think they have adjusted about as well as I have. And the kids- the kids shouldn’t have to adjust to life with a mom who can’t participate in life the way other moms can. It sucks. My kids have taken on like as caretaker for me. They drive around Miss Daisy. They worry about their mom all the time. It sucks. My friends? I don’t have any outside of my computer. They all left. They couldn’t deal with a sick friend. They couldn’t deal with someone who maybe needs to cancel plans at the last minute, or who can’t eat the same things or can’t jump around and do crazy things. I probably have more in common with folks in a Senior Living Home (and that is not a dig, I’ve actually always got on better with people older than me- the plague of being an only, imaginative, sensitive, intuitive INFJ-T, child). Even now that my children are adults, it’s difficult to do things. We’ve broken down and purchased a wheelchair for when the events are too much walking for me and my cane. But it’s still difficult. They can’t make plans without taking into consideration their ol’ mum. Tell me when they’ll adjust to that? Never, because it just gets worse from here on out.

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Tell me when I’m going to adjust? To a progressive illness? It may not happen in five or ten years, but at some point, things are going to go from bad to worse. How am I going to adjust to that? I can barely adjust to my life now and I will be expected to adjust to things then as well. How can it be so easy to just say to someone, adjust? Forget how life used to be before your body betrayed you; ignore how your body failed you and pretend that you don’t live in pain 24/7. It shouldn’t be that difficult right? You are only human, with flesh and bone and nerves and blood.

Progressive illness

Tell me when I’m going to adjust? I see more doctors than my 83-year-old father. I’ve had more tests and surgeries than he has too. Tell me when I’m going to adjust to seeing my body in the mirror and looking at the scars left by countless surgeries and stitches that have tried, in vain, to fix me? The hip surgery (total hip replacement) and spine surgeries (lower lumbar fusion and sacroiliac fusion)? Those are just the visible scars. The scars on the inside are more difficult to bear. The scars on the inside are more difficult to contend with. The mental illness can be more debilitating than physical illness. But coupled with the physical illness, it can be unbearable. You don’t adjust; you just live. You live hour by hour, sometimes minute by minute, fighting tooth and nail along the way because you refuse to give in. Because you still have so much to live for.

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That’s what this ends up being all about. Not trying to adjust to this life of illness and pain, but about living. Living the best way, you can, through the worst times imaginable. You just live, because you can’t adjust to pain and illness, ever. You can’t adjust to it because it’s always changing. Symptoms are always evolving and sometimes you find out that you have new things wrong. There’s no adjusting to that. You just live. You wake up in the morning and you feel grateful that you can start the day. You feel grateful that despite the pain you can see your kids and plan a future with your husband. You take it hour by hour and minute by minute if that is the only way you can do it. Grateful for the seconds in between. You don’t adjust. You just live.

Living Life

DEFCON 5:

Complete Autoimmune Gang-Bang Attack

I’ve been in a flare for a few weeks now. However, because there’s no rest for chronic spoonies, I’ve been going through tests for Crohn’s and then yesterday, what has apparently resulted in the ultimate “Fuck-You” from my body, a nuclear stress test and echocardiogram for my heart to try and figure what’s been going on with my blood pressure. It’s decided that it’s okay to play jump rope with my blood pressure, swinging from high to low and causing me some mildly, unpleasant symptoms in between.

For anyone who hasn’t experienced a nuclear stress test, let me just say it’s like stepping aboard the Willy Wonka Elevator Ride of Doom. But you have to get it done. And you get through it. It’s ten minutes- that fly by- of pure hell, but we live with symptoms that can be pretty comparable, that doesn’t go away. So, ten minutes, to a few weeks. I’ll hop on the elevator. Anyways, after it was done and I was heading home I started to feel progressively worse. Migraine, aching body: muscles and joints; the UTI I can’t seem to get rid of even on antibiotics was making me miserable; I was hot and cold and nauseated after I tried to eat dinner, then around 11pm I felt the coming on of blisters. I was thinking to myself,

“Seriously, what next?”

Here is where I insert a tidbit of chronic spoonie advice, never, ever pose that question to the Universe, because chances are you will get the answer. And it’s going to be an answer you don’t want. I slept like hell. Waking up every hour or so and in the morning, Crohn’s reared its ugly head.

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“Remember me, bitch?” Oh yeah. That was fantastic. And while I am in the bathroom feeling like I’m at death’s doorstep, but recalling that no, that was the Elevator Ride of Doom and I had stepped off, those blisters on my mouth? On my fucking nose too! And there I was, head in my hands, certain that my body was plotting my death. There’s an Instagram moment!

Instagram

Now, I’m sitting here venting, drinking Dr Pepper and eating potato chips because I need salt (dehydration), I’m in desperate need of caffeine, partly because of my head still aching and partly because of nausea and I don’t dare eat “real food” because I have no idea of what future plans my evil intestines might be working up. I’m pissed that all this is happening. Pissed that my body is so defunct that it can’t handle the tests. I’m wallowing in the Pity-Party, popping off the cork in the bottle of champagne, without any freaking remorse about it because this sucks.

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When I stepped into the vehicle last night all I wanted to do was be a crying-whining- bitch about the entire experience, and I couldn’t. I had to buck-up. My safe place and I couldn’t unwind, I couldn’t lean on the person that mattered most. I felt lost. Adrift. The thing about being sick 24/7, in some shape, manner or degree, is that people forget that “not feeling” well isn’t some rubber stamp emotion that gets stamped on everything. They forget that these tests, which can be a picnic in the park for most normal humans, wreak havoc on people like us. The fragility of an already beat-up immune system becomes overwhelmed and for those of us lucky enough to win the multiple autoimmune disorder jackpot, can mean an essential gang-bang assault.

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I’m exhausted but I can’t sleep. Hungry but the idea of food nauseates me. I hurt at a level I can’t even put a number on. Do they have a level 25? I’m tired of describing it. I’m tired of talking about it yet it’s the only thing that makes sense to do; I’m tired of waking up and realising that yes, there is a new and particularly painful place to hurt and I’m exhausted from trying to get in front of this. I contemplate this completely ludicrous idea of stopping all my meds, stopping all my doctors and just living out the rest of my life in peace. It’s not going to kill me- at least not immediately and the prospect can be tantalising. But it’s not realistic. Any chance I have to longevity and being pain-free requires me to visit doctors and have tests. For now, all I can say is that my body is waving the White-Flag and I surrender.

Thank you for listening. You mean the world to me. ~ Liza aka ChronicDiva

 

I Want My Old Brain Back

Other Wistful-cisms…and Conclusions

 

I want my old brain back. You know the one I’m talking about. The one that could remember an entire grocery list on her own. The one that didn’t need to write everything on post-it notes or List-App’s on the phone or computer. The brain that made me a pretty successful mother of four small children, under the age of 5 and then when they got older: returned to school and later on, returned to work as well. There was a lot of juggling going on and I was managing alright. Looking back on it now, what I saw as overwhelming was stressful, but not as overwhelming as it would be for me now. It amazes me the volume of information I could store in my memory without needing to write it down. Entire lectures got banked up there with little need to study. I could remember my medication (for the few I took) without needing to write it down or needing an alarm on my phone. I stored in my brain at least five family and friend’s numbers and now I can only manage my husband, the rest are in contacts on my phone. Some of this can be attributed to getting older, and our lives stored on our phone, while others are truly a memory issue that is a direct result of my autoimmune disorders. Many of us are familiar with brain fog; this is like brain fog on steroids that can be positively alarming.

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The clarity is gone. The crystalline keenness in which I had been so accustomed to seeing things had now dissolved into feathered edges that forced me to squint. It makes me angry and frustrated and deeply sad because everything that I want to do well, like sitting down to write, which I love, is twice as hard. Words don’t just fire off the synapses like they once used to. It feels as though they are blanketed in a thick, low fog and I have to search for the words, sometimes using Google, or the Thesaurus like a fishing rod, several times to hook and reel the right words I am searching for. There are times I will slam the laptop shut, frustrated that this is how things have turned out. Frustrated that this is my calling and that the universe has seen fit to throw in another challenge as if life itself weren’t challenging enough. But I refuse to allow it to rob, what it is I love. If I just lay down and die, it wins. I’m sorry, but if there’s one thing that people with chronic illness have in reserve is strength.

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I want my health back. I’d settle for my health at my 30’s. I had migraines every few days but now, when I get a migraine on top of everything else that makes my body feel like someone’s punching bag, it makes me feel one hundred times worse. I want the freedom of being able to eat what I want and not have to worry about it making me sick to my stomach. You forget about how food makes you feel; you forget your vanity and about the calories because you’re losing weight from the terror waged every day in your digestive system and all you want to do is enjoy food for the sheer sake of pleasure because food has now become your Moriarty. Worse than that because you can thwart your nemesis, but you can’t thwart food. Food is life.

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I miss my old body and freedom of travel. I want the luxury of being able to travel whenever and wherever I want and not have to take into consideration my illnesses and how travel will impact my body or how the stress of everything will tire me out or be too painful for me. I want my 20’s and my 30’s when I could run and jump and climb and do yoga. I wake up in the morning and the first thing that greets me is pain. There are different levels of pain: some is throbbing and aching in my joints and muscles, while others radiate and spike down from my lower back down my leg. It’s not something I get used to and I have to breathe a little humour into it, thinking, “Well, if I ever wake up and not feel pain, I know I’m dead.” A little dark humour, but that isn’t anything new with me. People would probably find it surprising to hear that I would like to go out more. I am most comfortable in my house, given my anxieties, but there is still an explorer in me. However, because I feel fragile and I’m afraid of unknown terrain hurting me, I distrust going out. Hence, missing my old body and freedom of travel.

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I miss unfettered laughter, a quiet mind, a carefree spirit. Did I ever have these things? I’m 45 years old and when looking back on my life and grasping at memories of my childhood and teenage years and older I wonder if I ever did truly have these things. Was I shaped by a bipolar mind with anxiety? The PTSD is a condition that was developed, but surely, I was a clean slate at some point? But the truth is, I don’t think the slate was ever clean. And still, I would take it over some days now, because I can taste the levity on my tongue; the sweetness of it and recall the serenity and carefree spirit that allowed me to take chances I don’t think I could take now. Mental illness paints things a shade darker. Creates shadows where there aren’t any or ought not to be any.  I can briefly grasp at what was during manic episodes, but it’s never right. They’re either pale comparisons or too bright and too clean. Like I jumped into Wonderland. I wonder what it’s like to be in a normal head and experience emotions normally and not acutely because as I miss the unfettered laughter and quiet mind, I also miss the natural ability to arbitrate emotion. Instead, I feel with every atom of my being- every pore. I love with every ounce and feel with every tear, those losses that may be minuscule to someone else, are devastating to me every time, taking a bit of me with them.

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I want my old brain back, and my old body back and- but I always stop. Because whining about it and venting about it is different than actually getting it back. It’s necessary to do. After all, you have to grieve what you’ve lost, because in a very real way you have lost a part of yourself, but in another way you’ve gained a different part of yourself and that is the part, I’m not willing to let go of, as much as I might complain. Why?

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Because my chronic illness, while being a pain in the ass 99% of the time has taught me three very important things: Being Compassionate toward others, Listening without Judgment, Living Life Despite The Pain. It’s pretty simple and while I could probably add more things, these are pretty much the foundations by which I try to live my life. It’s not always easy; I’m not a saint, but I try. Compassion is not something I find difficult, especially when encountering so many who find it difficult to be compassionate toward me. I’m already naturally empathetic. Listening is almost as easy, but listening without trying to interject opinions or thoughts and just listening to a person is more difficult. People often want to speak about how they relate to a person’s situation, or how they would deal with it, or how they feel about it. The keywords here being they/themselves. Listening and focusing on them, and not yourself is more difficult. It is something I work on every day- not making it about me. Living Life Despite Pain, of just Living my Best Life is strange, the most difficult. My life has been focused around my family- my husband and four kids and learning how to live life in a way where it also makes me happy- where I am doing things so that I thrive as well, feels selfish. But we need to make the most of every day we are living on this earth, so that is what I am working on.

 

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Emotional Abuse

Emotional abuse can be just as exhausting and insidious as physical abuse.

  • It’s also just as damaging.
  • Can lead to depression and anxiety.
  • It can lead you to be unable to stand conflict. Doing anything and everything to avoid it, to the point where it becomes unreasonable and dangerous.
  • Your pendulum swings from indecisiveness to over-achiever.
  • You have serious trust issues, always expecting the other shoe to fall.

 

I’ve been emotionally abused. I hide it well. It’s not something I advertise and it’s never been something I advertise, but it’s always been something that if you look deep enough, that you can read. I’ve always felt it was a weakness. I can remember very clearly being told by my abuser that it was a weakness. Had I been stronger, tougher, maybe I wouldn’t get treated that way. So, I tried to make up for my failings, and never quite managed because the very nature of the abuse leads you to avoid all manner of conflict like the plague. You feel like the only way you can keep from drowning, keep from suffocating on the conflict is by avoiding it altogether. So, you bow out of every single fight, even though you may have the right of it. You go on to over-achieve in your work because you’re terrified of failing; you never really trust anyone- and when you do, it’s always there in the back of your mind that they may betray you because that’s what people do. You protect yourself on all corners and it’s exhausting. It’s exhausting during the abuse and it’s exhausting after the abuse.

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My ex-husband emotionally abused me. It lasted 5 years; our time before marriage and our actual married time. I can’t give you a lot of detail examples on instances of the abuse. I learned a long time ago that my memory has thought it necessary to protect me by making much of my time with him into veritable Swiss cheese. I’ve thought about going to a therapist for regression therapy or hypnotherapy, but in all truth, I’m terrified. I remember enough to still be traumatised and I remember enough to have happy memories of my children growing up, so I figure I’m okay. What more could I want to dredge up? However, it’s important to understand the feelings the situations made you feel, and that is what I can share with you, because even now, 25 years later, I can remember how I felt as keenly as if I were there then.

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More often than not, he would behave intentionally frightening with me. This would achieve to two things: 1.) he wouldn’t have to be physically violent with me which would leave marks, which would either have to be covered up or need a story, which would require secondary lying 2.) the way he frightened me was threatening me with abandonment; how was I going to take care of my children on my own? I had no education at the time to speak of. I needed him financially. He would demean me regularly, the words used not as important as how it made me feel, which was useless. I felt useless as a mother because I was young, new, fumbling at it and he told me everything I did was wrong and why couldn’t I do it better. I felt like a failure in my wifely “duties,” such as cooking, cleaning and cooking. I never measured up to the perfect Southern woman. And worst, I was supposed to accept everything that was happening because we were married. Divorce wasn’t an option. I said yes and therefore, I was locked into the deal. I would imagine this would fall into intentionally interpreting traditional practices because last time I’d looked, marriage wasn’t literally until “Until Death Do Us Part.” But to him it was. It was like it gave him the okay to do whatever he wanted to me. Even rape me.

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He socially isolated me by moving me to his home town in Alabama. Even though a good majority of his kin were here, in Texas. But I was too much trouble. It was as though I were the child. The isolation was the worst thing about it there. No one cared I was miserable because no one ever saw me. I spent months in the house with no one calling or visiting to see how I was. He’d terrorise me- leave me with bruises because I hadn’t made him what he wanted for breakfast or because the kids were too loud when he was trying to sleep during the day because he worked at night and I was trying walking on eggshells, trying to keep little children entertained, while quiet and ultimately I would fail. His wrath had me in the closet hiding from him, praying he wouldn’t hurt me and staring down the barrel of a rifle, my heart pounding as I cried. He’d repeatedly raise the issue of death and my gears would have to shift from scared little girl to stoic defender. Unsure what he would do in that house, where I had two children to protect. One of the worst tactics he used after knock-down-drag-out-fights when I was trying to sleep, was stomping through the house opening drawers and cursing. He’d start in the kitchen, cabinets slamming, drawers too and then worked his way until he got into our room, going through the chest of drawers while muttering like a priest in fervent prayer. Meanwhile, I was pretending to sleep; my eyes closed tightly in hopes he would leave me be and the fighting wouldn’t start anew. But I think he knew I was awake. I think the purpose was to keep me awake and scared.

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People are often angered that my ex violated my body; I am more angered that somewhere in his mind he felt he could violate my mind and that he could bully me and emotionally hurt me and threaten me. Then, when we were coming down to the wire, going through the divorce, in classic abuser style, he made it his mission to try and take our children away from me, (saying he was smarter and more capable) when he saw everything shattering around him and he saw all his bad decisions coming to haunt him. Why you might ask, is this worse? Because it’s been 25 years and it’s still with me despite how much I’ve healed and how much I’ve progressed with the help of my husband. The fear, the shame, the anxiety; the necessity to avoid all conflict at all cost- and when I don’t avoid it feeling badly at myself. Like I don’t get a vote in how I feel, or I’m not supposed to get mad or defend myself. It hurts my self-esteem, which in turn can affect my mental health.

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Gaslighting

My ex-husband did leave bruises. But the funny thing about bruises, they heal. They may leave behind bad memories and bad dreams and even PTSD, but there’s something about the emotional abuse, that is worse in my opinion. The insidious nature of it that while you can see a fist driving at you and may have a chance to duck, you can’t necessarily see this coming at you. Then, when it hits, it leaves you devastated and breathless. You stare at the devastation, not understanding what happened, wounded and bleeding mentally and emotionally and sometimes are left to pick up the pieces alone because when you are left with actual bruises that people can see they are quick to get angry and want to help- but emotional abuse and mental abuse, people are more inclined to scoff at you and say things like: “why are you letting him do this to you?” I know. I’ve been guilty of saying those words too. And I’ve felt ashamed for it. Because you can’t help it. You want to believe that a person you love wouldn’t beat you the way they are and that they will change. But over and over again, they do. Over and over again they rip the stitches open, making you bleed fresh, forcing you to wrap your head around something that shouldn’t be. People you love shouldn’t hurt you this way and yet here you are.

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Don’t let people tell you that you should get over it. Don’t let people tell you that after X number of months or years that your life should go back to normal. That after everything that happened to you, that your life just gets to go back to being the same. Sure. There are some that will ease back into normality easier than others. There are some that will forget and all will be well. But for others, the scars are too deep. For others, there comes are a realization that what you endured wasn’t simply at the hands of your significant other, but there were others. Others in your life who felt you were an easy target and abused you emotionally and mentally and this realization breaks you further. Take the time you need, heal yourself slowly and forgive yourself when you have setbacks because it’s not easy. Remind people in your life that all of this doesn’t go away. It stays in your heart and soul forever. A scar, like a lesion, until you die.

 

Choices, Pain, Scarlet Letter

It’s difficult being chronically ill or chronically in pain. On the one hand, because pills are given to you by your doctor and don’t necessarily carry the same stigma like natural or holistic remedies, people assume they make them better and that they are good for them. (I am purposefully leaving out opiates because of the current climate surrounding this medication and because most understand that pain medication doesn’t cure you, only masks the pain.) What they don’t get is some meds cure one thing while giving you something else. Example: some medicine you take may be great at helping your Crohn’s but may wreak havoc on your liver later down the line and long term. This is the reason for contraindications on many medications that you are warned about prior to taking them. The kind you hear about on commercials for everything from diabetes medications to anxiety medications: “May cause liver damage, heart damage, stomach bleeding, psychosis or suicidal thoughts and possible death.” I don’t tell people to abandon medicine, but using natural methods when you can, seems logical to me when the prospect of continually ingesting toxic chemicals will eventually have adverse effects. It really isn’t if, it’s when.

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Conversely, as someone who’s been studying and practicing holistic medicine in some manner for 20 years, I see many people who jump into the practice with both feet without taking into account they are still taking medicine. When I gently bring up the fact that they are taking such and such medication while also taking such and such herbal supplement or trying to concoct a blend of herbs that might help them naturally, I just about lose my mind. Just because it comes from nature doesn’t mean that it isn’t powerful. Just because it comes from nature, doesn’t mean that it can’t harm you. There are many herbs and flowers out there from where we can get medicinal relief- key word there is medicinal. These teas, tinctures, salves and anything else we can come up with can interact with medicines that we take orally or even put topically, on our skin. It is up to you, the budding, student, chemist, to study that which you are using and also that which you are already taking. It’s also up to you to talk to your doctor or pharmacist. These people are educated in the dosages and interactions and can save you from possible harm. Do not either, decide to just take yourself off all your medications without first consulting with your doctor first. Some medications need to be tapered off first or the shock can be too great to your system. Afterwards, if you want to dive into the world of Natural Herbal Remedies, do so under the guidance of someone already experienced. This is the best way to learn and the best way to ensure you don’t inadvertently harm yourself. A teacher can double check what you are doing while also teaching you.

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Here, is where we return to the unique subject of opiates.

When it comes to pain medication and ways to deal with pain medication there are many variables. Everyone responds differently to pain. Generally, everyone’s first course of action should be something non-invasive and therapeutic, like therapy and yoga while medications should bring down inflammation, without possibly causing addiction. Medicine is tricky because everyone is unique and you can’t look at someone and know how they will respond. If you want to try holistic ways before you even get to medications, try: white willow bark, turmeric, cloves, ginger, birch leaf, capsaicin and arnica, just to name a few. However, most of us who are taking opiates have all run the course of a holistic route and perhaps still use holistic efforts as we can. We’ve also tried to use general medicine such as OTC medications and then tried physical therapy and yoga and perhaps, some of us even tried acupuncture to try and gain some relief before we were shuffled off to pain management or surgeries or both.

We are a group of people within our society condemned, because we’ve had no choice but to seek outside intervention for chronic pain, for which there are those who have found themselves in the unfortunate position of addiction- a place a no human would seek to get themselves caught. Now, at the mere whisper that you’re taking hydrocodone it’s like you’re wearing a Scarlet Letter “H”. And it might just be that a Scarlet Letter might be preferable. Doctors are taking patients off their medication’s cold turkey; families are intervening between patients and their medication. It’s becoming rather biblical out there, and I do mean righteous. With doctor’s believing they know best, and patient’s families believing they know best and no one stopping and thinking to ask, “Hey, maybe we should ask the patients what they want? Maybe we should ask the patients what they need?” It’s frightening for many people who live day-to-day wondering when the plug is going to get pulled on their meds. When they might be forced to live in horrible pain.

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There are many facets to this story. Many ways you can go about trying to heal yourself and you should have that choice instead of being persecuted for them. Continue to learn what you can and make the best, informed decision you can for yourself because you are the one that has to live with the pain. Only you.