While I’ve Been Gone

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.

Of Plague and Racism

@chianti_holmes on Instagram A Beautiful depiction of what has become a symbol of this movement.

It settled into the landscape-

like a toxic brume, infecting people

one-by-one, two-by-two

until we are engulfed

by staggering numbers of sick and

paralyzing numbers of death that

we’re ill-equipped to handle.

How ill-equipped?

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.

Meanwhile,

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

I didn’t have photos truly stark or horrifying, but I had surgery 3 days ago and it’s still unsettling for me to have to go into a hospital alone and have to deal with everyone alone. I’ve had some very traumatic experiences in hospitals, so doing all of this without my husband or children was difficult. And this surgery proved difficult and it was an emotional reminder that COVID-19 still has its grips still firmly hooked into our society. That we should treasure out time with those we love.

Marriage and Chronic Illness

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?!

From The Mighty

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.

True Love

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.

screamorenjoy

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.

chroniccat

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?

memories

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.

seesaw2

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.

caregiver

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.

BeautifulScars

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

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.

lotus

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.

lotus

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.

lotus

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.

lotus

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.

lotus

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?

lotus

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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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.

warning1

 

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.

holistic1

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.

“Η”

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.

Procrastination in Chronic Illness

I have never been one to procrastinate. Never. I am the kind of girl who always got her assignment done in school early. I plan for things. I plan for research and I have time-tables. I like to know how long it will take for me to research before I sit down to write so I have everything in order. I make menus for the week and sometimes for the entire month if there is a surgery that I have to plan for. The point here: I am a planner, not a procrastinator and what chronic illness sometimes creates is a huge procrastinator. Here are some reasons why.

Showers: My Nemesis

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Once upon a time, when my world was lovely, I could luxuriate in the bathtub or a long shower. I loved turning up the music sometimes, singing my favourite songs and just relieving some stress. There’s none of that now. Besides the fact that the simple act of taking a shower exhausts me, it’s compounded by the water hurting my skin and making me itch violently and for unexplained reasons. It could be a combination of the fibromyalgia’s allodynia that makes my skin sensitive and susceptible to pain, and my own pressure and cholinergic urticaria that causes unexplained hives when the water beats down on my skin. Whatever the reason might be, showers have now become my least favourite activity and one which I put off because it makes me feel so badly. I hate the way the procrastination makes me feel too: dirty. Which usually sets off my particular brand of OCD, which then causes a spike in my anxiety. I hate that feeling. I lament those days when I could sit in the bathtub for an hour and turn into a prune. Even if the itchies were to go away there’d still be the exhaustion that comes after the shower. The deep exhaustion that leaves me so tired I need to go sit down for a while before attempting to dry my hair. And I dry my hair sitting down! I feel like I’m 100 years old and I’m only 45.

Blog Posts: On Hold!

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I love writing. My perfect world consists of a cabin, and writing, drinking hot tea and not much else. But with chronic illness and chronic pain, there are days I procrastinate writing or weeks where it gets put on hold because I am feeling so badly or where I’ve gotten so little sleep that I know stringing two sentences together is going to be a challenge. It bothers me when I procrastinate. Even when the procrastination is not really procrastination but time off, for medical reasons. It makes me feel like I can’t even do one thing, like a “normal” person. And I have to sit down with myself and tell myself sternly but gently, that no, I’m not “normal” but who is? We all have things going on with ourselves that present us with challenges. The art of living is learning how to work with these challenges so that we can live our lives the most abundant way we can. And if that means My work schedule is one week on, one week off, or three days on two days off or however it may look and however unconventional that maybe? So be it. As long as I roll out articles that my readers are happy with, I will keep on doing it because it makes me happy and gives me purpose.

Food is Divine: Unless You’re Gut is Fuc**ed

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I love to cook. I love to bake. Bread was once my best friend. Pastries my lover. The holidays had me salivating and planning for months. What to cook? What to bake? Cookies were sent to relatives and friends for gifts. Now, where I once saw food in a vibrant palette of colour, it is grey. I procrastinate with eating and cooking and making my weekly menu for meals. It is no longer with the same enthusiasm that I sit down to eat with the family or go to eat with my husband, and the holidays have grown dismal and lack the flavour I was once accustomed to. This is all because of my gut issue, partly related to Crohn’s and partly to other contributing gut issues like non-Celiac Gluten Intolerance that have made my eating experience something I don’t know what to do with. Cooking for my family was an extension of my love for them and I don’t know how to do that anymore. Eating the food cooked is no longer an enjoyment. I feel like chronic illness has stripped away from me something dear, that made me who I am.

To Sleep, Perchance to Dream: Unless You’re in Pain

sheepjumping

Ah, to sleep. This has been something that has eluded me since I was a youngster. Being the INFJ I am, I can remember reading my mother’s Reader’s Digest, and catching this article about how keeping your room cool, having lavender on your pillow and your bed at the opposite end of the open window so you could feel the breeze would help you sleep better at night. I have been struggling with insomnia for a long time. 35 years to be exact, though these days my insomnia is the result of pain and I procrastinate for bed because I most of the time I lie there in pain counting exploding sheep. They explode because in the midst of my trying to peacefully try and breathe through the pain, I will suddenly get a lightning bolt down my leg and there will go the peace and the sheep with it. Inevitably, I avoid the whole situation by not sleeping. But, not sleeping isn’t exactly great coping skills for someone with chronic illness or someone with insomnia. You need sleep but when you are in pain and you have tried everything, or think you have and haven’t gotten adequate results, it can be more than frustrating. That’s when you just avoid everything. Goodbye sleep. It was good knowing you.

All of this is part tongue-in-cheek but truly heartfelt. Your life changes when you are faced with chronic illness and there may be many reasons you procrastinate. It’s not just an unwillingness to do something. I feel a lot of times that we simply aren’t understood. That people haven’t tried to see things from our perspective or taken the time to think about why we might be the way we are. It’s a very rough road we’re on. One that unless you’ve travelled it, it’s unlikely you will ever truly understand it. But it shouldn’t mean that you can’t try and empathise a little. Maybe something cheeky, silly but still real, will help.

 

They Call That Fashion?

[image: Getty Images]

KimhēKim fashion brand posted videos from its September 24 Paris Fashion Week show, which features a model walking up the runway in a T-shirt labelled Sick across it with an IV as an accessory instead of a purse. The collection is described as “energetic,” as models sported black sunglasses and either carried selfie sticks or IV drips. Among some of his reasoning for this line: “This collection is about attention-seekers spending their summer vacation in a hospital.” He also says, “These days we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit that we want it, but do it with elegance.” (Burlet, 2019)

Okay. There is a lot to cover, so let’s get down to it. As a person with chronic illness (autoimmune disorders), who goes every six weeks and sits for roughly two hours with an IV for infusions, who is SICK, and who doesn’t give a crap about being elegant about it because I’m not an attention seeker- wow! This takes absurdity and shock fashion/art to a whole new level comparative to Bstroy, which showcased their bullet-like hole hoodies, and names of schools who had experienced mass shootings. It’s difficult for me to grasp why any designer would want to take these tragedies and exploit them in this way. But by his very own words, “attention-seeking” and “spending their summer vacation in a hospital” he truly doesn’t understand the difference between sick and trendy or fad. Where the rich or elite go to IV Infusion Bars to receive vitamins and rehydrate after a night of partying. I also considered that this collection might be in part to poke fun at these rich and trendy types, with their IV drips and selfie-sticks but I think it failed because of the manner he went about in showcasing it that would have been solved with one word: Not Sick.

I kept reading his words over and over again trying to understand his reasoning for this outrageous collection. It did not seem like a purposeful attack on the chronic illness community, however ignorant it may have been. But before you become angry with me, ignorance is never a defence and yet, I would still try and understand him. What I zoned into was the part he says “we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit we want it, but do it with elegance.” I read this and interpreted from him that these people who are flying off to these resorts they call “hospitals,” for their IV drips and “medications,” because they’re “sick,” should perhaps be honest about what they’re doing, be more authentic about themselves and while they are doing so to be more elegant and fashionable. But he widely miscalculated this interpretation and in doing so offended another community who is Sick and who is Not Attention-Seeking. Those suffering from Chronic Illness.

My first reaction when seeing the Instagram posts were quite visceral. I was instantly angered that someone could be so obtuse that they would throw this “Fashion” out there to be oohed and aahed over by fashion gurus and the general public everywhere. I may not be a fashion follower, but I know enough to know that Paris Fashion Week is a big deal and something like his collection can suddenly shift chronic illness and the people suffering from it into a negative light. We already bear enough scrutiny in our daily lives from the public that seeing this on the catwalk made me mentally scream and then take to social media to vent my anger the only way I could. But because I blog, I decided to use this platform as a way to explain to readers why this angered so many. However, I thought it was only fair to research why he may have created this collection, to begin with, hence the reason the introduction is laid out the way it is, which is only a logical guess. He’s been pretty cryptic about the meaning and inspiration of the collection and I did my best to be fair. He’s a fashion designer, successful from what I have read, dealing with an element of society that we might call the 1%. I am not implying that the 1% doesn’t deal with chronic illness, but what I am saying is that they can check into hospitals on a whim, for summer vacation, whereas the working class do not.

So, I’m wondering if there’s a bit of ironic humour going on with him somewhere there. A stab at those elites who think that checking themselves into the hospitals for a summer equated to being “sick,” and not vanity? His collection backfired among those of us who are sick. Did it backfire as a whole? Did it do badly at the Paris show? I don’t honestly know? Will it draw chronic illness into a negative light? Will people think that we are attention-seeker’s more now than we were before his collection? I don’t think so. Was it in poor taste? It’s aggravating to me as a chronic illness advocate, as someone who struggles with chronic illness, to wake up one day and see things like that. It’s frustrating. But then I remember, that’s why I am here. I’m here not only to bring awareness and to bring positivity to people who are sick, and their families, but also to those who know nothing about the illness and the chronic illness community, like him. So try not to despair when you see things out there like that my friends. Band together and redouble your efforts to spread awareness.

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Being Your Own Health Advocate

It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

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You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

susie signs a contrat

 

Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

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Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019

In a More Holistic World Why Am I Still Treated Like A Part?

The necessity for a more integrated medical approach.

 

Let’s face it, everywhere you turn you are blasted with information about how important it is to treat your body, mind and soul. While it may have begun as something of a New Age thing, or maybe something that only those Yogi’s did, has quickly integrated itself within our mainstream society, philosophy and medicine. These non-medicinal reaches extending into our surgical units, where recent research has been done regarding the use of aromatherapy to combat nausea after surgery. The reason I bring this up is that every day we are being introduced to more and more reasons why maybe, we should step back and take a look at the bigger picture of our body and why we should perhaps not reach for this or that pill. But when we go to the doctor seeking help, we are often treated like a car on a conveyer belt and directed to this specialist or that specialist. While this is fine in some respects, for many of us with chronic issues, it’s a nightmare. Especially when you have 7-8 specialists and they don’t communicate with one another. This needs to change.

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I’m not rebuking Western medicine here, nor saying that we need a complete upheaval of our current medical care. In fact, I’m only suggesting one, small change. Talking to one another. This has been the subject of other posts as well because, in an age where we literally have the power to talk to someone at our fingertips, I don’t understand why doctors can’t talk about their patients. And some do. Some are very involved in how they treat a person, while others remain quite apart from it, leaving it to the patient to relay messages and information that might be muddled before it gets to the doctor’s ear. We’ve all played telephone, right? How does a doctor expect a patient to relay information to the next doctor in the same, exact form in which it was received? What if the doctor has questions about what was advised to the patient? Where is the debate about treatment when the patient has no medical background? But sadly, it hardly ever gets to that point. You go to the neurologist and he gives you medicine for problem A. You go to the gastroenterologist and he gives you medicine for problem B. You go to the Rheumatologist and he gives you medicine for problem C. You go to pain management and he gives you medicine for problem D. But, what if problems A, B, C and D are all interconnected? What if it’s not the medicine that you need at all but someone to connect the dots and take stock of the whole you?

 

Integrative Medicine: A form of medical treatment that combines practices and treatments from alternative medicine with conventional medicine. There is an emphasis on the “whole person,” and focuses on wellness and overall health, rather than only treating the disease.  

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My favourite part of that whole definition, besides “whole person,” is “rather than only treating the disease.” We’ve become, in my opinion, rather over-zealous in the treatment of disease and the use of pharmaceuticals and I think this has been our greatest downfall in our application of conventional medicine. Once upon a time, to become a doctor was as sacred a calling as becoming a priest. It was generations of fathers (as a male-dominated field) who had sons, who were followed this path of healing. “First, do no harm,” was an oath breathed out upon the lips of these doctors with reverence. A reverence that extended to the profession, the body that they would be treating and the manner in which they would be treating them. I’m not saying that there weren’t bad doctors in the past, what I am saying is that the approach they took for the treatment of the body was more holistic than what we have now. There was a relationship between the doctor and the patient that you cannot cultivate in the 15 minutes you may have to speak with a patient now. There was an emphasis on the treatment of the whole person, which meant taking into account what they ate and what they did for a living and what they did in their leisure time that you may never know about a patient now. The prescription of medicine was given with far greater care and with an honouring of how these medicines might affect the rest of the body. Western medicine has never been as holistic as Eastern medicine, however, we are looking towards pharmaceuticals to solve all of our ailments, without looking far closer to home first. And to be fair, it’s not just physicians or pharmaceuticals, it’s the patients too who want these “quick fixes,” without regards to how much of a chemical cocktail they might be putting into their body. I’m one of them. We all want to feel better. And we all want to feel better right now. But at what cost?

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My PSA: I’m not pushing the No Medicine/Totally Holistic philosophy. I fall somewhere in the happy medium. And I greatly understand the need for medicine. It saves lives. No doubt in my mind. What my message is here, is balance and respect for both the pharmaceuticals and for your body. I respect people’s decision regarding their treatment. This is my decision.

 

The cost equates to side-effects from medications that begin to impact your body and where you develop symptoms and other (possibly) long-term problems from these medications, which end up requiring more medications. It’s a vicious cycle and one that I’m half-convinced that pharmaceuticals count on to keep you as a patient. Think about the long-term revenue that both doctors and pharmaceuticals earn from those of us with chronic problems that have no cure? We’re cash-cows. We’re the Golden Ticket. Keep us functioning; keep our symptoms managed and you have steady millions of patients who have to be prescribed countless pills, including pain medications and who will never get better. Is that not the perfect plan? But what about those of us who aren’t content with managing symptoms? What if we dream of something better? What if we dream of something more than “conveyer belt medicine,” where you’re rolled through in 15 minutes and written a prescription by a specialist who doesn’t care about x and y problems and only cares about z. Our body, our future; we need to advocate for ourselves this balance until our medical community is once again reminded of its roots. 

HealthyLife