Hello my Spoonieees!!!
I’ve been gone a long damn time, or at least it feels that way. I bet you thought I left for good? I hope you didn’t. I’d never do that. It’s difficult to tell talking into the void the way I do, but I hope there’s someone out there listening. I always try to answer when I get a comment or question. It’s inspiring and it helps motivate me knowing that I’m not alone, even when it feels that way. After all, that’s what I tell you. You aren’t alone.
There’s been a good reason for me being away. I’ve been extremely busy with life and life has been throwing some huge curveballs my way. My husband has been getting ready for a deployment that we’ve known about but has gotten delayed because of COVID. Now he’s gone and things are a little more settled, but only slightly. We got a new puppy just before he left. It’s something I’d been thinking about for a while, but finally just got the courage to do. After the death of out Pittie, Bowie, my heart was just broken. He was only 6 and he had gone from healthy to on death’s doorstep, literally in a few hours. It took 2yrs for me to be able to mourn him and be able to open our door again to another dog. This one is a Catahoula Leopard/Pittie mix and he stole my heart the moment I saw his little face in the rescue shelter website ad. I stalked it for 2 weeks before I had enough courage to go to my husband, knowing he was readying to deploy, unsure he would want to get a dog now. I’d also just undergone surgery for a spinal stimulator and the recovery was a bit brutal, and I was questioning whether I could handle training a puppy on my own while he away. By the time I decided I could, I thought for sure the puppy I’d seen would have been snatched up already, but there he was and even better, my husband thought it would be a great idea for me to have the puppy while he was away to take my mind off his absence. We adopted the little guy and I named him Nashoba, which supposedly means “wolf” in Choctaw. (Don’t quote me on this- it was something I found while looking for names for him, and because Catahoula’s are bred from the Molossus, Great Dane and dogs Native Americans used, I wanted to name him something that tied him to his roots. Yes, I am that person. LOL)
Nothing has changed with my health while having Nashoba, which has made having a puppy a little challenging. The one piece of advice I could offer any chronically ill puppy owner (and I’ll probably have a post coming out soon) is nap when they nap. If you have ever had a newborn (and even if you haven’t) you know they are notorious for not sleeping at night, but also requiring upwards of 15+ hours sleep per day. Take advantage of this. Rack out when they do. Forget chores, forget life as you know it for a few weeks while they are getting trained, my friends. It is a full-time job, which is why I have neglected my blog. I have barely been able to function for my family, let alone be able to research effectively for my blog and then be able to train a puppy and give him the attention he needs AND give my other puppers the attention he needs. He is a senior, who although loves his new playmate because he misses his previous one, also wants individual attention. So, it is important that if you have another dog, no matter the age, you are giving them the attention they need to and not so bogged down with one that you are utterly exhausted from training or just looking after the pup that you flop into bed at night and fall asleep. The flip side is that you are burning the candle at both ends, and trying to undertake everything, which leaves you in the same position- utterly exhausted. I know this to be true because burning the candle at both ends is my middle name.
I don’t ever go into things thinking this is what I am going to do. But I have found out in these years living with chronic illness and chronic pain, that because you have a measure of your independence taken from you, is when you have the opportunity to take it back you leap into that chance with everything you have. Backtracking here a little bit in my story, that surgery for the spinal stimulator- though it didn’t cure me by any means, it alleviated me a little of some of my pain. Someone who doesn’t live with chronic pain 24/7, 365 days a year, doesn’t understand how a little bit of an alleviation can transform your life. Do I still walk with a cane? Yes. Do I still take pain pills? Yes. Am I still in pain 24/7 365 days a year? Actually, yes. It’s just a little less so I can function a little better and do something’s a little better. The point I am trying to make here is that feeling a little better, sweetened the illusion and made it easier to burn that candle at both ends. But chronic pain is just one aspect of what makes me not feel good, and the chronic illness always makes things challenging. It didn’t matter whether or not I waited to get this puppy now or later, chronic illness was going to be my constant companion and the truth was, my mental health was beginning to head in a downward trajectory and I new having him in my life would be good for me. I love taking care of things, teaching them and watching them grow. It’s a great feeling. And there’s nothing quite as wonderful as the bond that develops with a well-trained dog, or any pet that you keep and rear from young one. I have a cat that I feel just as strongly about. Having animals in my life is extremely important to my well-being. They help me to be happier and feel better on days when I am not feeling well at all.
Swinging back to health-stuff; I swallowed a camera pill to see if we can finally nail down a Crohn’s diagnosis. They’ve been treating me as though I have Crohn’s because I have all the symptoms, but only loosely. To treat me, they need to be able to see where the damage is and so far, it has eluded them. They’re hoping the camera pill will reach in places the colonoscopy could not, given the length of the intestines and where my pain seems to be located. I’m happy it finally worked out as I seem to be active in a flare, so I’m praying that little pill takes some really good pictures after the God-awful prep I had swill down. I swear, it is absolute torture IBD patients have to go through to see what is going on in our gut. They’re going to be looking for any bleeding and damage as I have been anaemic and I may be bleeding from somewhere. Not badly, but enough where it’s causing me to be anaemic. After all this, even on the bad days, I still have hope that I’m going to be managed enough where I can carry on enough to function like a quasi-normal person. That moderately sunny day is enough to get me through to the next day.
I also made the monumental decision to change my rheumatologist. I didn’t feel like after two years under her treatment I was progressing in the right direction. I wasn’t getting worse but I wasn’t feeling great and there wasn’t a lot of feedback about the medication she was giving me or why she was giving it to me and as a blogger, advising my readers to take charge of their health and who they see and not be afraid to change their doctors if they don’t feel they are getting the care they need, I felt I wasn’t following my own advice. So, I investigated doctors in my area and found one who had tremendously positive reviews and was named number one in my city by U.S. News & World Report. I lucked out in that the doctor is a woman because it was a personal stipulation of mine- not that I haven’t run across terrible female doctors, but I always personally feel that they tend to understand women better. My first appointment with her was amazing! To my relief, she said my rheumatologist had not misdiagnosed me, but the medications I am taking are all at very low dosages including my infusions. We are aiming to increase the dosages to maximize therapeutic levels in hopes that this will help me feel a great deal better. Today, 8.6.2020, was my first infusion at the higher levels and it was a little rougher than usual but nothing I can’t handle. I’ll keep y’all posted on progress.
Before I forget, there was also the decision to go back to school! I took one summer class that I got an A in and I have one more class- Algebra that is my nemesis, and then I will have officially graduated. Just one more thing on a very, busy plate of things to do.
Ok, this turned out to be a much longer post than anticipated, but I wanted you to know I didn’t forget about you. I will be here keeping you posted on my life, on my health, deployment, on the puppy and all of it as I get time but it will be more sporadic than usual because of everything. If there is anything, you’d like to see me write about, if you have any ideas, thoughts or suggestions, please drop me a line. I am always grateful for the thoughts and ideas of my readers. Without you, there’d be no blog and my life would be much different. I appreciate and value you very much.
**Images are not my artwork or creation and I don’t claim them to be.
It settled into the landscape-
like a toxic brume, infecting people
until we are engulfed
by staggering numbers of sick and
paralyzing numbers of death that
we’re ill-equipped to handle.
People are arguing the “why’s”
of using masks;
they are questioning the government and how far they can infringe on their “freedom”
by telling them where they can go, and how close they can stand to people.
the virus doesn’t care about your political affiliation, all it cares about is how to infiltrate your body.
Are you going to allow it?
Over a little James Dean, Rebel Without a Cause, angst?
One day I woke up and our world was different.
A virus had dug in to almost every part of world-
some people were frightened, while others rebelled
and chose to live in a moment of time that no longer existed.
Because that world no longer existed.
Virus- had infiltrated our lives, and
at least for time as we knew it,
until a vaccine could be found,
this was life.
A summation of 2020:
Quarantine, working from home, homeschooling kids/parents who never home-schooled, no graduations for some Seniors, improvised graduations for others- on racetracks, zip-lines and jet ski’s;
Doctor’s visits became tele-vists, going out to eat became curb-side-pick-up or delivery;
bars were closed but delivering drinks became a thing, Las Vegas went dark, movie theaters shut down.
But plagues are known for peeling back and revealing humanity’s stark cruelties,
which is what it did-
showing us in living colour how not only a certain populace can be brutally attacked by a virus,
but how it has been brutally attacked by police, and institutional racism, for decades.
It is only now, with the power of our cell phone- and with the power of the media- that we have been able to shatter the consciousness of the people.
A year ago, was a different world.
It was uglier.
We’ve been awakened to the offensive nature that goes against our humanity,
but we must fight those that wish to keep it in place,
in order to change the system and bring our vision of humanity.
Peace and change don’t come for free or without some kind of cost.
But in the end, it could mean a world of inclusiveness;
where your colour or being LGBTQIA is seen as a thing of beauty and
you’re respected for what you bring to the proverbial table.
LMZ ©June 14, 2020
Here’s a glimpse into a marriage where there’s chronic illness eating away at what was a healthy couple’s life. I am not making a distinction as to man or woman because frankly, I’ve seen this all too many times in either gender, so I don’t think it matters. It’s not really a male or female thing. It’s an understanding thing and a communication thing. Many times, this goes down in social media. A call for help. Here it goes: Individual with Chronic Illness: Hey guys it’s me. It was a bad day and I’ve been really sick. The pain has me so I can sit up without the world spinning and making me so nauseous I vomit. If that wasn’t enough, I have a sinus infection. I haven’t been to work and it’s causing financial strain. I’ve been told to buck up. I have to move on from this pain. I can’t sleep forever and there’s things that have to be done. They are resentful of having to do everything after long days at work and also needing to keep up with children. I get this. It’s not like I want to be laying here in pain. I miss work. I miss being useful. I’ve tried getting up but vomiting on standing is a great deterrent. Still, I’ve made my decision. For the sake of my marriage and my job I am ditching my doctors and my meds and I am getting up. Mind over matter as they say. I will do this. They will be proud of me. I don’t want to lose my marriage because I am weak. Wish me luck, I will need it.
First, as many of us are in groups for chronic pain or fibromyalgia or other chronic illness, we are only getting once side and it’s easy to hit that keyboard, typing out emotionally. I’ve done it. Not too long ago as a matter-of-fact. But we may not be getting the whole story. It’s not to say our friends aren’t telling the truth, but it’s just a general fact. Like any marriage, we aren’t privy to what is happening behind closed doors and that is very much the same when it comes to social media. We only know what one person is posting. That being said, being reactionary to a problem has never worked for anyone and making someone feel guilty for being sick, when it isn’t their fault for being sick is a terrible thing to do. As every therapist has ever said, communication, communication, communication. Two people who are invested in a relationship who are dealing with something as invasive as a chronic illness, need to sit down and talk about it. Ditching doctors and medicine and pretending like it’s no longer there will not solve a damn thing. You don’t pretend like you don’t have cancer and survive it for very long and while chronic illness may not kill you outright, it will kill your relationship and your career, if you don’t learn how to deal with it in a meaningful and logical way. That means sitting down and talking to your significant other and working out how you divvy up chores. What are you able to do on a day-to-day basis that won’t leave you so exhausted that you aren’t able to function the rest of the week? What are you able to do during the weekends that will lighten your load for the week, like preparing meals ahead of time or prepping work clothes or getting things ready for the kids? There are ways to work around chronic illness with your partner if you collaborate with one another instead of work against each other.
The partner who is chronically ill may be experiencing a deterioration of the body due to illness, but you as a couple, are experiencing a deterioration of communication due to an inability to come to terms with reality. Your significant other is trying to maintain life as it was before you got sick [Before Chronic Illness], while you are trying to navigate life with your illness, coping with bad pain days that leave you unable to get out of bed [After Chronic Illness]. You’re both speaking a different language and it’s nobody’s fault, really but it is society’s fault for shouldering the blame on the chronic pain patient and saying they need to, “buck up,” and that they need to “just get over this and move on.” Did that sound too harsh? Are you thinking, “c,mon now, no one really says anything like that anymore?” They actually do. Not just loving partners to one another, but doctors to patients. I know, right?!
Take a step back and remember that there’s a reason you are together. Remember that togetherness isn’t all about the good times. Sometimes it’s about looking at things differently and choosing to view it through a different lens so that what may have once seemed like a crappy deal, may now be a gift you never knew existed or a possibility that you never realized lurked behind that door. It really just depends on how you frame things and sometimes it’s not easy and it takes time to learn how to look at things differently. You can’t be upset at your partner for not catching up to your way of thinking and you have to be understanding that it may take time for them to catch up. Remember, it’s a life changing adjustment for both of you regardless who has the illness. But it is worth it in the end. You are gaining peace. You are gaining understanding of one another and you are gaining more time with each other.
And How You Use It
In recent days there’s been quite a lot of buzz in the media and social media surrounding the President and his coronavirus briefing. There’s been those coming to the defense of the President, saying he never specifically said “inject” and then the President, himself walking back his comments implying that it was sarcasm, meant to infuriate the media and so he could observe what they would do. Before I continue, here’s a portion of what was said.
“Supposing we hit the body with a tremendous — whether it’s ultraviolet or just very powerful light,” Mr. Trump said. “And I think you said that hasn’t been checked, but we’re going to test it?” he added, turning to Mr. Bryan, who had returned to his seat. “And then I said, supposing you brought the light inside the body, either through the skin or some other way.”
“And then I see the disinfectant where it knocks it out in a minute — one minute — and is there a way we can do something like that by injection inside, or almost a cleaning?” he asked. “Because you see it gets in the lungs and it does a tremendous number on the lungs, so it would be interesting to check that.” Trump Muses About Light As Remedy
I’ve read opinions in posts circulating social media, suggesting that they are in health care and that what the President misspoke as “disinfectant” (he never said Lysol specifically…) could have meant a procedure known as lung lavage, where antibiotics and other medications can be injected into the lungs so they can be “washed,” giving the patient the ability to breathe better. It’s commonly called lung washing; “this procedure treats the rare lung disease pulmonary alveolar proteinosis (PAP).” How Lung Washing Helps Patients Breathe Again The article does say, which you can read for yourself by clicking the link, that it doesn’t work on any other lung conditions (diseases). However, they do use this technique for Pneumonia and they also use something called Bronchoalveolar lavage (BAL) (also known as bronchoalveolar washing) for Interstitial Lung Disease and COVID-19, as a diagnostic tool and therapeutically to remove mucus, improve airway ventilation, and reduce airway inflammation in conditions such as chronic obstructive pulmonary disease (COPD). Bronchoalveolar Lavage I’m not a pulmonary therapist; I researched this information to make sense out of what I had been hearing.
- The first thing I learned, about the importance of your platform and how to use it, is this That the President clearly doesn’t understand the magnitude his words have on his platform and that the extent of those words goes way beyond the obvious political, “I’m King of the World,” mentality.
It’s interesting to me the debates people are having across social media and how some revolve around the semantics of how the President used the word “injection.” Some argue that he did not mean to inject something into the lungs, with, what I am presuming is a large needle. Others have zeroed in on the use of the word disinfectant, and how the President seems to conclude a relationship between the disinfectant used in a lung lavage and Lysol or Clorox (bleach) that you would disinfect your countertops with. Disinfectant Makers Steer Consumers Away from Trump’s Coronavirus Comments Still others, use a red marker to indicate that the President never used specific product names, like Lysol or Clorox and it was narcissistic on the part of these manufacturers to think the President was referring to them. But then you have the President himself, who attempts clarification of his remarks by saying,
“I was asking a question sarcastically to reporters like you just to see what would happen,” he told journalists at an event in the Oval Office. Trump Says Remarks Using Disinfectant
There were very few people arguing about the 1.) The intent of his words, 2.) The impact of his words on his, 3.) or the consequences of his words on his listeners. Every person who has a social media account and accrues followers, who have some kind of purpose for being there, be it a cause they are passionate about, a message they want to send, or maybe they’re an entertainer, model or visual artist (the list is infinite); those people have now acquired a power- an audience. We take that power for granted. It’s just social media, but it’s much more than most care to admit.
- The second thing I learned, about the importance of your platform and how to use it, is Intent, Impact & Consequence. As a writer, it’s important to step into your words with Intent. It’s not as esoteric as it sounds. There’s no chanting involved or mystical music. The only purpose; setting intent.
If you practice yoga or mindfulness, you know a little about intent. An intention is not a goal. It’s something you want to align with your life; it’s an expectation or attitude you’d be proud to commit to. It has to come from your heart and soul. Setting intent in your writing is not much different. It’s a commitment to setting a purpose in regards to your words. Understanding that when you send your writing out into that perceived void, that it’s not that at all. It’s a space filled with living, breathing, humans who have hearts and souls like the rest of us. Intention Setting
Social media has changed our relationship with words. It’s changed how we communicate with people and how people hear our voice. In some, this change has been empowering. They have been able, through the use of their platform, bring awareness to those causes that are meaningful to them. Whether it’s money through fundraising or raising awareness of a rare disease, these voices use their platform and their voice (words) for the positive. Conversely, some people use their platform and their voice in a way that is negative.
I believe, as a writer, that my words are powerful. My words, like an artist, paints broad and delicate strokes across the canvas bringing to life a picture for my readers to see. Sometimes, this is a very literal picture. Other times, it isn’t so much a picture but emotion, that I am drenching the reader in. Sadness, loneliness, anger, happiness, anticipation, joy; all of these feelings could wash over a person in one blog post. Each word was carefully chosen to convey a feeling or meaning in my heart. Not everyone is as thoughtful and social media has become a grey space where people do not honor the living, breathing, the human being behind the screen. As we are thrust into Twitter or FaceBook (only to name a few), people feel it’s perfectly okay to express their opinion or thoughts, without any “thought” as to how it may impact anyone beyond the initial self-gratitude of getting that idea out, or those little likes people click, which can become addictive. They deny any responsibility for how their words may impact another person reading them when the first and cardinal rule of any writer (someone who writes any words to be seen by another) should be ownership of your words. If you don’t own your words then they aren’t yours to begin. You have to be prepared to go down with the sinking ship, which is why a writer should take care with words. They should be thoughtful as to the intent of their words and how it will be interpreted. A meme I’ve seen reading something like: It’s not my problem how you interpreted my words. It doesn’t work with a writer; everything you want to be heard- your only tools are your words. There’s no tone of voice, no inflexion, no facial features or hand gestures. However, it types out is how someone out there will read it and it will have an impact on that person. End of story.
- The third thing I learned, about the importance of your platform and how to use it is how your words can Impact people you don’t know. Everything we type can have a major impact on another living, breathing human. The problem is most of the time we can’t see how our words impact people. They are sent into the ether of the internet, sometimes lost in the shuffle of all the other posts, but somewhere out there, someone is reading it and you don’t know the situation of that person.
- The fourth thing I learned, about the importance of your platform and how to use it, is, how your words have Consequences that you must own. Most people think of consequences as negative. But everything we do, every action, has a consequence. It’s not necessarily bad, but we have to be willing to embrace the negative as much the positive.
“Sir Isaac Newton taught us that for every action in the physical world, there is an equal and opposite reaction. This principle not only applies to the physical world but in other areas of life as well.” Actions Have Consequences Every action we take produces a reaction and consequence. You yell at your friend and they start to cry. Their crying is a consequence of your yelling. You’re angry that your boyfriend cheated on you and you take to social media, not only attacking your ex’s actions but him personally and the girl he cheated on you with. What you don’t know is that the girl battles depression and that he never told her had a girlfriend. Your words have an impact on her. She plummets into depression and attempts suicide, for reasons you may not understand. It’s easy not to bear a responsibility such as this. The responsibility that your actions may have driven another person to an action that could have cost them their life, but it is your responsibility to bear. Life brings both good and bad consequences depending on our choices and it doesn’t matter if we say it on a platform and the person that is affected is 3,000 miles away and we didn’t know them. It is my opinion, my belief, that this inherent lack of understanding within humanity, is at the core of many of our problems. We have stopped viewing one another as humans who directly affect one another because of the great chasm of space the internet has created between us. Once we can take responsibility for the impact of our words, and the consequences our actions may have on other people, we may become better as a human race. We can begin this, in part, by committing to operate using these platforms with an intent that is aimed toward positivity and goodwill.
Broad, W. and Levin, D., 2020. Trump Muses About Light As Remedy, But Also Disinfectant, Which Is Dangerous. [online] Nytimes.com. Available at: <https://www.nytimes.com/2020/04/24/health/sunlight-coronavirus-trump.html> [Accessed 27 April 2020].
Mahajan, D., 2020. Bronchoalveolar Lavage (BAL)- Procedure, Indications And Diagnostic Tests | Medcaretips.Com. [online] medcaretips.com. Available at: <https://medcaretips.com/bronchoalveolar-lavage-bal/> [Accessed 27 April 2020].
Health Essentials from Cleveland Clinic. 2020. How ‘Lung Washing’ Helps You Breathe Again. [online] Available at: <https://health.clevelandclinic.org/how-lung-washing-helps-patients-breathe-again-video/> [Accessed 27 April 2020].
En.wikipedia.org. 2020. Bronchoalveolar Lavage. [online] Available at: <https://en.wikipedia.org/wiki/Bronchoalveolar_lavage> [Accessed 27 April 2020].
Geller, M. and Stempel, J., 2020. Disinfectant Makers Steer Consumers Away From Trump’s Coronavirus Comments. [online] U.S. News. Available at: <https://www.usnews.com/news/top-news/articles/2020-04-24/lysol-maker-urges-people-not-to-inject-disinfectants-after-trump-remarks> [Accessed 27 April 2020].
Mason, J., 2020. Yahoo Is Now A Part Of Verizon Media. [online] News.yahoo.com. Available at: <https://news.yahoo.com/trump-says-remarks-using-disinfectant-170528091.html> [Accessed 27 April 2020].
Eisler, M., 2020. Intention Setting 101 – Mindful Minutes. [online] Mindful Minutes. Available at: <https://mindfulminutes.com/intention-setting-101/> [Accessed 27 April 2020].
Hammerman, Y., 2020. Actions Have Consequences | My Jewish Learning. [online] My Jewish Learning. Available at: <https://www.myjewishlearning.com/article/actions-have-consequences/> [Accessed 27 April 2020].
By the Numbers
In my state of Texas, we’ve been doing fairly well in terms of this virus’s overall death toll. What had been a projected death toll of 6,000 has come down to 1,000 and while that is terrible in and of itself it is far better than 6,000 dead. Those numbers came down because we did things quickly; what New York and New Jersey and parts of the northeast didn’t. We quarantined and we practised social distancing. It saved lives; of that, there is absolutely no doubt in my mind. I believe the scientists and the numbers and I will never believe its fake science or the idea that scientists are feeding us wrong information. Can the information be wrong depending on the numbers we put into the equations? Yes. Definitely. Statistics and models/graphs are very dependent on the information that is fed into it.
Speaking of models, here’s a little information that might help you wade (or trudge, if you’re like me) through the available models surrounding coronavirus a little more easily.
- Models use different techniques to project the future. They are built around the notion that the current regiment of stay-at-home orders and social distancing will continue. They also cut off predictions after two months or less even though we know the coronavirus will be with us much longer.
No matter the mathematical skills employed behind these models, there are still questions left unanswered about this virus which make these models less than perfect. 1.) Researchers aren’t sure about the rate of transmission to other people; 2.) rate at which people who become infected die; 3.) how many people who have already been infected and have some immunity to the disease or even how long that immunity will last and; 4.) even the count of coronavirus deaths are uncertain. All of these variables can change how the information on a model is presented and it’s not shady science or bad math, it’s a fluid scene. This isn’t going to be a tidy, little story like Outbreak or Pandemic where in a few weeks or months you can trace a virus and contain it, and then in another few months develop a vaccine and cure everyone. That’s the magic of Hollywood. This is the ugly, horrible, real thing. This will take a long time to map out and it will take hard-working, brilliant people to hunt it down and more brilliant people to find a vaccine. In the meantime, people will die. More people will live; our nurses and doctors will be working tirelessly and we need to have their backs. We owe them immeasurable amounts of love and gratitude. [i]
These protesters in Kansas, Texas, New York, Michigan, Ohio, Kentucky, Minnesota, Virginia, Wisconsin, California, North Carolina and Pennsylvania among other states have a right to be afraid. But not for the reason you may be thinking. They have a right to be afraid because these circumstances have us in a position where the right answer may actually be the one that kills us. If we continue along with the course scientists and doctor’s have laid out for us, social distancing and quarantining until- let’s say- June, it could be devastating to our economy and also extremely limiting to our personal liberties. If we throw our hands up in the air and say something in the spirit of our Lt., Governor Dan Patrick, like just resign ourselves to the fact that people will die, and well, there are “More important things than living. And that’s saving this country for my children and my grandchildren and saving this country for all of us,” then the virus could make a hard comeback. We could see waves of more sick and more death in the style of New York that will overwhelm our health care system. It makes sense people would be confused and afraid. You’re talking about people’s livelihoods and how they put food on the table. I get how important that is. We’re one of those families who lives paycheck to paycheck. We’ve been very fortunate that although my husband is working from home, he is getting paid the same as though he was at work and it’s not reduced. But we also have all our kids at home all the time and so it means more meals are being eaten and higher grocery bills. But if he didn’t have this job we’d be in dire straights with the rest of Americans- and I still wouldn’t change my position because opening up businesses and resuming life too soon nulls and voids all the work we’ve put in up to this point. Why do that and risk a wave of infection that might be even more ruthless than ever before? Why risk that with an upcoming flu season and damn our citizens to something worse than hell? When scientists warn us about an impending hurricane, we make the preparations. We don’t ignore them and hope for the best and resume life as usual. We don’t leave it in God’s hands no matter how much we may believe. We batten the windows, go inside and hope for the best. And as Dr. Fauci said, which segues into the next portion of this post, “Unless we get the virus under control the real recovery economically is not going to happen.” [ii] [iii]
[AP Photo Elaine Thompson]
On April 20th, Dr. Fauci spoke to George Stephanopoulos about the antibody tests and the protests. Here is a little bit from that interview I hope will clarify some questions you might have about what those tests are and how we move into the future. This isn’t a transcript of the interview, but a summarization of what Dr. Fauci said.
The biggest thing that needs to happen before life can return to normal is Testing.
We need to be doing 5 milling tests per day to start and then 20 million tests per day by June. We’re only managing 50k a day right now.
The Antibody Tests that everyone is so hung up on are great, but they have their issues too. Here is the information an antibody test will give you.
- Whether you were exposed, infected and likely recovered. This is great. This will tell Doctors and Scientists much-needed information.
- The problem: They have to be validated and calibrated. We do not know what an antibody titer means yet. The reasonable assumption is that an antibody leaves you somewhat protected to an infection, but that has not been proven.
- It’s been proven for other viruses but not for this one. It’s not a crazy idea. There’s precedent for it but we just don’t have the proof yet for this one and we don’t know how long that protection if it exists, lasts. Is it one month, three months, six months, a year? Are we willing to take that gamble?
- “So, what you do if you jump the gun and go into a situation where you have a big spike, you’re going to set yourself back. So as painful as it is to go by the careful guidelines of gradually phasing into a reopening it’s going to backfire. That’s the problem.” -Dr. Fauci [iv]
Still Sick and Dying
The pandemic hasn’t magically eliminated the sick and dying. You still have people in dire need of blood, organs and major surgeries that can’t have them because our doctors and nurses are being utilized elsewhere. People who may have lived- who may have been able to have stolen an extra 6 months to a year with family, which is precious when you know you are going to die, or those who may have a fighting chance but that one procedure that could change their life is denied, are being sent home to die because of this pandemic. One in four cancer patients reported delays in their care because of the pandemic, including access to in-person appointments, imaging, surgery and other services according to a recent survey by the American Cancer Society’s Cancer Action Network. But you have people out there who are protesting for their “liberties.” Some need to work. Others want to go out to get haircuts, go out to eat, get together with friends because they are bored. I understand the hardships of those families who need the income. I truly do. As a patient who has to balance multiple illnesses and a plethora of medications often with ugly side effects, you are continuously analyzing the cost/benefit of every medication, every procedure- pretty much everything that has an effect on your body and your health. One medication may reduce pain, but cause itching. Are you, the patient, able to live with that? Can your body handle antihistamines or steroids if necessary, on top of pain medications and any other medication they might be on? If it’s a yes, then go for it. [v]
You can’t choose to disbelieve the science regarding the coronavirus but choose to believe the diagnosis your doctor gives you when your sick with pneumonia or worse, cancer. It doesn’t work that way. You can’t choose to disbelieve when you get a weather alert about a possible tornado or hurricane. No one would be out there protesting the stay-at-home orders if there was an impending storm. There’s a reason we believe science. Perverting the information, whether it be math or science because it’s changing day-to-day is ridiculous. We’re in the infancy of a pandemic, of a new virus. There’s going to be some errors. Protesters can harp about “liberties,” they can harp about “Constitutional Rights,” but these don’t just apply to them. They apply to all of us and this virus doesn’t distinguish between good, bad, Republican, Democrat, White, Black, Asian, Mexican, poor or rich; so, we need to be vigilant and protect ourselves. This isn’t going to be forever. One day things will go back to normal. There will be a vaccine. But jumping the gun will ensure that we’re employing these precautions for much longer than we’re needing to and that people will continue to get sick and die. Is that worth anyone’s liberty? Could you roll a die with the name of six family members and whoever it lands on say it’s worth their lives? What I am saying is we all have liberties and freedoms and rights inherent the pursuit of our happiness here on this planet. Infringing on mine and possibly costing my life during a health crisis makes no sense. This is war; only the enemy is unseen.
[i] Bui, Q., Parlapiano, A. and Sanger-Katz, M., 2020. What 5 Coronavirus Models Say The Next Month Will Look Like. [online] Nytimes.com. Available at: <https://www.nytimes.com/interactive/2020/04/22/upshot/coronavirus-models.html?referringSource=articleShare> [Accessed 24 April 2020].
[ii] Sorace, S., 2020. Protesters Rally Against Washington’S Coronavirus Stay-At-Home Order: ‘Give Me Liberty Or Give Me Covid 19’. [online] Fox News. Available at: <https://www.foxnews.com/us/washington-coronavirus-protest-inslee-stay-at-home> [Accessed 24 April 2020].
[iii] Madani, D., 2020. Texas Lt. Gov. Dan Patrick On Reopening Economy: ‘More Important Things Than Living’. [online] NBC News. Available at: <https://www.nbcnews.com/news/us-news/texas-lt-gov-dan-patrick-reopening-economy-more-important-things-n1188911> [Accessed 24 April 2020].
[iv] Good Morning America, 2020. George Stephanopoulos Interviews Dr. Anthony Fauci. Available at: <https://abcnews.go.com/GMA/News/video/dr-anthony-fauci-reviews-latest-approach-reopening-us-70238315> [Accessed 24 April 2020].
[v] Grady, D., 2020. The Pandemic’S Hidden Victims: Sick Or Dying, But Not From The Virus. [online] Nytimes.com. Available at: <https://www.nytimes.com/2020/04/20/health/treatment-delays-coronavirus.html?referringSource=articleShare> [Accessed 24 April 2020].
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.
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.
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.
- 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.
- 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.
- 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
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
Adding an excellent resource for terminology:
** 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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
“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!
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.
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.
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
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.
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.
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.
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.
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.
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?
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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