Tag: chronic pain

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The Best Laid Plans…

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As the quote goes, “the best laid plans of mice and men, often go awry.” No truer words can be said, especially for those of us trying to manage chronic illness. It often feels like one thing after another (and a lot of times it actually is), which wrecks the best of our intentions. This is how life has been in recent weeks for me. There was illness, there was not getting over said illness (which even now I struggle with remnants of), there has been flaring and there has been the grief and devastation to sort out after needing to put down our long-loved dog of 14 years.

Our boy, Grissom.

Needing to get back to work on my blog, as much for distraction as my having neglected my blog, I considered what topic would be best and I decided on ways you can be productive/ have a productive day with chronic illness. It fits, right? Because, often-times when we are struggling with constant symptom or flare-ups of one symptom after another, it has a snowball effect on our lives and what we had planned to do. Here are some tips that I hope may help you to create a better atmosphere in which to work and flourish.

Spoon Theory is a way to illustrate the energy limitations that can result from living with a chronic illness. Look it up and take it seriously, if you haven’t already. Break down tasks to make things more manageable. Listen to your body. Only you know what you are able to do, without causing further havoc on your body.

Relax. But only enough to give yourself a breather between tasks. It’s a balancing act between working, resting and not over-working yourself to exhaustion and further flares.

Remember that productivity will vary from person to person, even those sharing the same chronic illness. Don’t try to be anyone else. Just be you, boo.

Pacing. To sum it up briefly, according to Psychology Today: Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Learn about it and practice it. Know when you function best. Morning person? Night person? Somewhere in between person? Figure it out and utilize it to your advantage.

Alternating different tasks can also be beneficial and not just necessary for someone like me who struggles with ADHD. When you alternate tasks between a physically demanding or mentally and emotionally demanding task and do something else you are allowing yourself to rest, or decompress, so that you can return to your task and finish it later with the same energy you began with.

Remember life rarely goes as planned, and that dealing with unforeseen tasks such as a sick child, computer malfunction, or other emergency can use up all of your energy when you are chronically ill. And to make matters worse, you often feel as though you are falling behind on your tasks. Which may be true, but not something that can be helped and you need to be gentle with yourself. If possible, add white space. This is essentially, some buffer space into your day or week to prepare or catch up on work.

Triage your to-do list. Seriously- split up your assignments into “Must-do” and “Would-like-to.” It’s also a good idea to have a back up plan for bad days so that when something does happen it doesn’t send your anxiety into over drive and unmanageable levels.

Reconsider your timing for caffeine. (Don’t hit me!) I know that morning latte or espresso can be a literal life-saver. However, caffeine is known to raise cortisol levels, but when you wake up, your cortisol levels are already naturally high to prepare your mind and body for activity. So, when you are enjoying that early morning, please wake me up, brew, you could be creating unnecessary stress, leaving you feeling jittery or in a slump just a few hours later.

These are all manageable ways to create a working environment, or even just a way to function with day-to-day tasks, that helps you thrive. Living with chronic illness can often make us feel less than. Less than who we were before chronic illness, less than our healthy colleagues at work, or less than our friends. Utilizing these little changes can help you feel more like yourself and give you that little mental bump you need to feel good about what you can accomplish.

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Accepting or Not accepting chronic illness

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Your Relationship with Chronic Illness is Personal

Let me begin by stating that I do not have multiple sclerosis, Let me also say that how one deals with their chronic illness is extremely personal and cannot be deemed as right or wrong. However, this is something that people who struggle with chronic illness face, and it is not something that ends after you decide. For example, perhaps you decide to accept your illness. This doesn’t mean that 5 years down the road you aren’t willing to re-evaluate, or vice versa. Chronic illness is a beast, and because it is something you have for the entirety of your life, it can be a very fluid, ever-changing beast.

Be Pissed. Be Accepting. Be Both.

I read the article in Hollywood Life about Christina Applegate’s struggle with MS and how she admits she’s “never going to accept this.” When I read this, I was admittedly a little torn in my sentiments. I have several chronic autoimmune disorders that have absolutely changed the trajectory of my life. This isn’t where I thought I would be and what I thought I would be doing at 48 years old. The last ten years have been turbulent and much of it spent trying to accurately diagnose my illness. In the beginning, I was very much in that same camp of, “No, I am not about to let this defeat me. I am pissed.” But then, after a few years, I migrated toward an acceptance of my illness and how it changed my life. But after another year or two, I realized that you can live in both camps. I accept my illness. After all, it’s not going to change; there is no cure, and all I can do is manage from day to day. But I can still be angry and unwilling to allow this beast to take any more from me.

The complexity of Chronic Illness.

It is also scary. It can fluctuate from day to day. Hell, it can change from hour to hour. Sometimes, it can change so drastically that you look in the mirror and you don’t recognize yourself or your life anymore. Chronic illness means living life “a quarter mile at a time.” Enjoying things you can when you can; taking time to slow down and rest when you need to, despite what anyone else thinks. It also means fighting like hell and railing against your illness when you can. Hating it. Mourning your life before. There’s no right or wrong way to accept this change in life. You deal with it each day in whatever way you think is most effective.

What You Choose Is Enough.

I applaud Christina Applegate’s authenticity and her perseverance through this ever-evolving illness. It isn’t easy for anyone to accept that they aren’t able to function as they once did or to accept help, whether from a walking aid or a human. It isn’t easy to watch your body change helplessly because there isn’t anything you can do about it. After all, your body is fighting against you. There’s no other way to say it, other than it is hard- really hard. There’s no cookie-cutter approach to handling this kind of diagnosis or how you proceed with your life afterward. You do what you need to do when you need to. That is all. It’s enough.

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How to Look Great and Feel Better

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The LoveKarmaFood blog brings people together with chronic illness, struggling from some of those secondary issues that many of us have, with a focus on healing through food – holistically. Reach out today to find out more!

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How to Look Great and Feel Better

Are you struggling with your self-image? Do you constantly feel tired or lack motivation? Or maybe you just want to take yourself to the next level. Making changes to your physical and mental health can help you look and feel your best – and here are some suggestions from LoveKarmaFood on how to do just that.

Exercise Regularly

Work up a sweat most days of the week to feel and look better. Not only does regular exercise keep your body in top physical condition, but Insider notes that it also puts you in a happier place. Exercise ramps up your endorphins to create a positive feeling while strengthening your muscles. 

Practice Self-Care

Self-care is something everyone should practice to stay mentally healthy. Here are some self-care tasks to try:

  • Sleep. The CDC recommends getting at least 7 hours of sleep to feel rested and energized.
  • Get outdoors. Fresh air and nature views can help you feel better.
  • Find support. A professional counselor or a support group are common examples of support options, but you can also seek support to help with your setting. For instance, paying a professional landscape company to spruce up the property is a great way to improve the appearance of your home, which can give you more stress relief and boosts your overall positivity. 
  • Connect with friends. Spending time with friends can lower your stress and improve your mood.
  • Focus on gratitude. Focusing on the things you’re grateful for can give you a more positive outlook. 
  • Practice mindfulness. Mindfulness involves staying in the moment and taking control of your thoughts. Practice being aware of your surroundings and not rushing through moments as part of self-care.

Clean up Your Diet

What you eat impacts your overall health and how you feel. Eating lots of junk food often makes you feel sluggish. Let yourself splurge a little so you don’t feel deprived, but keep most of your diet healthy and nutrient-rich.

Set Goals

Setting goals using the SMART (Specific, Measurable, Achievable, Relevant, Time-bound) method can boost how you feel about yourself. It gives you something to work toward and creates a sense of accomplishment. Perhaps you want to switch careers, but you don’t have the right degree. Enrolling in an online program can help you get the education you need to pursue a new path.

Try Something New

Try a new hobby or learn a new skill to improve your confidence. Hobbies give you something fun to do with your spare time, and they can provide a new perspective while enriching your life.

Keep Up With Care

Don’t wait until you have a health problem to go to the doctor. Scheduling a well-care visit yearly gives your doctor a baseline to make it easier to diagnose health issues early. Your doctor can provide customized recommendations on diet, exercise, and other factors that help you look and feel better. 

Control Stress and Anxiety

Having uncontrolled stress can leave you feeling overwhelmed or anxious. Find ways to manage stress, such as breathing exercises, visualization, yoga, and meditation. According to the Anxiety and Depression Association of America, 40 million adults experience anxiety disorders. If anxiety is taking over your life, see how Mind Atlas’ mindfulness program can help.

Explore Your Style

Looking and feeling great can come down to your physical appearance. Explore your personality by testing different clothing and hairstyles you love. Expressing yourself through your outward appearance can help you feel confident. It’s also about feeling comfortable, so choose clothes made of quality materials that are also versatile. If you’re a new mom, for example, go with dresses, nightgowns and PJs that make nursing easier, no matter where you are. 

You Can Feel and Look Great

Taking charge of your mental and physical health helps you look and feel your best. The two go hand-in-hand. When you feel better about yourself, you live a happier life and accomplish more, getting you closer to your maximum potential.

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10 Ways to Get Calm, Cool and Collected in Five Minutes

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Everyone struggles with stress. In fact, “nearly half of all U.S. adults say stress has negatively affected their behavior.” (Team, 2022)There really isn’t a way to escape stress in our lives. 8 out of 10 Americans report being stressed by the COVID-19 pandemic. Seventy-seven percent of U.S. adults are stressed over the future of the nation. Two-thirds of professionals are more stressed on the job than they were five years ago. (Korn Ferry, 2019) Health problems are a huge source of stress. Women often express they are stressed more than men (women place their stress levels at an average of 5.1 out of 10, while men report 4.4 out of 10.) (American Psychological Association, 2016) It’s not only the adults who are stressed either. Teens and younger children are feeling the weight of stress on their small shoulders. Why on earth are kids stressed, you might ask? Let’s see: mass shootings, climate change and global warming, widespread sexual harassment and assault reports and a rise in suicide rates, to name a few. So, since we can’t evade the stress that comes with life, the next best thing is having some tools to help us though the stress. Especially easy ones that can help us reach Calm, Cool and Collected in Five Minutes! Sign me up please!

Please enjoy this piece by Laura Newcomer

10 Strategies to Feel Calmer Fast

  • Listen to music

If you don’t already have a calm-down playlist, don’t let that be another stress! You can easily find calming music by searching Spotify or YouTube. Try searching general terms such as “calming music” or more specific queries such as “calm piano music” or “meditation music.” Research confirms that listening to relaxing tunes can help the nervous system recover from a stressful stimulus. 

  • Practice progressive muscle relaxation

This easy, equipment-free activity can help relieve both physical tension and psychological stress. The practice requires you to tense and then relax all of your body’s major muscles one at a time, starting near your head and working toward your feet. 

  • Watch an ASMR video

Though research into Autonomous Sensory Meridian Response (ASMR) is still in the early stages, some evidence suggests watching an ASMR video could promote a feeling of calm and overall well-being. If you’re not familiar with ASMR, it’s a pleasurable tingling sensation in the scalp or spine. Some people experience it when they watch others do mundane sensory activities such as whispering, turning pages, or eating. Experiment with different videos to see if a particular type works for you.  

  • Give journaling a try

You’ve probably heard this one before, but writing down your thoughts can be a powerful way to manage anxiety and spark a more positive mindset. Research suggests you can benefit from journaling in two ways: Free write about what makes you anxious or list things you’re grateful for.

  • Do acupressure

Even if you don’t have time for an hour-long massage, you can give yourself the gift of calming touch with acupressure. The practice may help relieve anxiety and reduce pain, and it’s simple. Learn some easy-to-reach pressure points, then apply some gentle pressure and feel your body unwind. 

  • Go for a short walk outside

Physical activity — including low-impact activities such as walking — helps release pent-up energy and is a proven tool for managing stress. Up the ante by taking your movement break outside. Research shows time spent in nature can help relieve stress and anxiety. 

  • Try a breathing technique

Focus on your breath for just a few minutes to help you find some space from stressful thoughts. If you’ve tried one style of breathwork and it didn’t work for you, try another! You have plenty of styles to choose from, including belly breathing, 4-7-8 breathing, three-part breathing, box breathing, and roll breathing. Experiment with different techniques until you find one that helps you feel calmer. 

  • Practice EFT tapping

Emotional freedom technique (EFT) sometimes goes by the nickname “tapping.” Whatever you call it, the practice has gained popularity in recent years as an alternative approach for managing everything from stress to physical pain. Research indicates it can be helpful for anxiety, depression, phobias, and PTSD. The process is a little involved, but with a little practice, it becomes easy. Check out a step-by-step guide to get started. 

  • Listen to a 5-minute guided meditation

Meditation has become go-to health advice for good reason. It’s been shown to ease anxiety, depression, and even physical pain. If the thought of sitting with your own thoughts for five minutes makes you more anxious, consider a short, guided meditation to make the process less daunting. 

  • Repeat a mantra

Sometimes, the best way out of a spiral of anxious thoughts is to distract yourself with another thought. Mantras (which are sometimes called repetitive prayers) come in handy. The technique is simple: Just repeat a short prayer or affirming phrase such as “With every breath, I feel myself relax” either out loud or in your mind while breathing slowly and deeply. Continue until you feel calmer. 

Conclusion

When you’re feeling overwhelmed, take five. Then deploy any of the techniques above. Within just a few minutes, you may find yourself feeling calmer and more equipped to tackle whatever challenges life throws at you. 

Hello January!

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So, how’s your New Year kicking off? Everyone happy and as healthy as they can be? It’s been a slow start for me in the writing and writing goals department, but you know what they say about slow and steady? And I’m very familiar with being slow! My cane and I were never accused of being fast.

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Let’s see, to start off with I had a mammogram in/around October and the results were meh. I have to have another mammogram done with ultrasound of the left side. Fun times! By the way…every time I see or hear mammogram it just sounds like someone dressed as a boob should be dancing around and singing Happy Birthday to someone. I know, weird, but that’s me. Anyways, I’m not too worried about it yet- about 10-12% of women are called back after a mammogram for more tests and fewer than 1 in 10 women are actually found to have cancer after that second appointment (www.ngrmc.org). But breast cancer, however remote the possibility is still scary. I lost two friends/coworkers to it, after they both fought very long battles with it. But worrying before there’s any hard evidence seems counterproductive. Of course, when it’s 1 a.m. and I can’t sleep, try explaining that to my over active brain and anxiety.

Less stressful but more annoying has been the fierce pain in my left shoulder that makes it impossible to sleep in any other position than on my back. Also, heel pain in my left foot which has been going on for months but I’m sure y’all are familiar with self-triage. If you’re not, my definition is: when there’s so much crap going wrong with your body that you have to decide what is most important and/or life threatening and you take care of that first. I did purchase a U-pillow from Amazon that has made sleeping better. I kid you not, we have like 12 pillows on our king size bed, not including my Squishmallows and every night has been this epic game of “where do I stick this pillow, so I don’t hurt.” Not a very good game title, but you get the idea. I also play that game with ice packs.

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I am still having gut/Crohns issues. While I have a great functional gastroenterologist, who I believe really listens and wants to help, the tests she wants me to do are not covered by my insurance and at roughly $400 a pop, I can’t rationalise the expense. I mean seriously, the question becomes pay bills or take these tests. I don’t have $800 bucks lying around for tests that may or may not tell me what is going on. So, I do what many of my Spoonie brethren out there do, I ignore it until I can’t anymore and try alternative ways to alleviate symptoms or hope that there might be a different test to take. It’s really a no-win situation but I haven’t found a better alternative.

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Okay, now that I have complained, let’s look at the positives. I’m writing in my blog. Yay! Woohoo! Pats myself on the back. Seriously, it can be difficult when you have a busy life and also the weight of being chronically ill and/or in pain. Additionally, there’s always this mini-dialogue going on in my head wondering if what I am writing about is meaningful/important. Besides this, I’m steadily working on my reading challenge this month. I haven’t gotten as far along as I’d like to, but I think trying to read at night is not a good time. I’ll have to make some time in the morning or early afternoon when I am not so tired. Even if tired doesn’t mean sleepy, it means my body and mind just want to zone out and not focus on words. Not to mention my RLS is sometimes so bad I can barely watch television at times. Good times, right?

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Other good things…the fam is happy and healthy. That is definitely something to be cheery about, especially in the age of COVID. The kids are doing great. Going to school and working. Oh! I have a list of topics I’m gearing up to right about. I am hoping having a list will help keep me organised and on track. That’s about it. Thank you for having patience with me and cheers to a new, and happy year!

See you in a week or two for my post on: Cervical Health Awareness Month

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Making Halloween Spooktacular

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For the kids and you when are struggling with chronic illness

What do I mean by less spooky? No, not supernatural. Less exhausting. Less plagued by anxiety. Less painful, because being in pain can really take the fun out of Halloween and give a different  meaning to Boo. And for your teens or little ones who struggle with having a chronic illness or autoimmune disorder this can be particularly challenging.

My children and I escaped the knowledge of our having chronic illness/autoimmune disorders until we were well into adulthood. I do not envy the very difficult task of keeping little ones away from the tempting sweets and artificial colours and high fructose that can often be found in candies. Children are bombarded with the talk of Halloween several weeks before hand and there’s chattering amongst them about what costumes they will wear and what they will be doing and who is going to what house for a party. I can’t fathom the stress of a parent who wants to make the day fun, special, spooky but safe for them. This difficulty increases by ten-fold when you are dealing with children.

However, it’s not just children who want to have fun on Halloween, it’s the teens and adults. Don’t worry, I have tips for everyone to make this Halloween Spook-tacular!

  • Find a Trunk-or-Treat: During trunk or treat events adults decorate the back of their cars for Halloween, load up on candy, and come sit in a parking lot for kids to “trick or treat” from car-to-car. It’s like a tail-gate with candy and costumes and the kids have an absolute blast. I’ve heard of trunk-or-treat events where kids show up by the hundreds. Parents typically have to reserve a parking lot or at least make sure they can use it for the event if it’s private property and you just hand out treats to the kids. This great for parents who struggle with chronic illness and kids who are fighting it too. For example, if your child is food sensitive, or you are doing your best to keep them from candies and store bought sweet treats, get a group of friends together with the same problems and have a trunk-or-treat with them. You know your child is safe then. This is also an easy and wise choice if your child can’t keep up with going around the neighbourhood but they still want to go out.https://www.ptotoday.com/pto-today-articles/article/6287-how-to-organize-a-trunk-or-treat
  • Pace yourself: This is for both of you. Don’t leave things for the last minute, however you decide to celebrate Halloween. Even giving yourself a week is better than leaving it until the last minute. Your body will thank you. This goes for your child too. And remember that goes for Christmas and putting up the tree on Christmas Eve. Decorating the night before might seem like a nostalgic tradition, but your body will think it’s torture and scream at you.https://www.yahoo.com/now/taking-holidays-day-day-spoonie-232047353.html
  • Stay home: If this is an option for you, make it an event. Like-wise, if this is an option for your teen or even your little one, don’t let it go by just being another day. Halloween is about the magic as well as the spookiness. Dress up in costumes, pass out candy to the kids, watch scary movies and have tasty snacks.
  • No Pressure: The best thing to do with an older child is to do your best to help them not feel pressured into doing something everyone else is doing. I know, I could feel the eye-rolling from here. But it’s easier than it sounds with Halloween than other things. Give them options. Fun options and they will be more willing to take it easy. But if they don’t, comfort them and help them use it as a learning moment.

September is Chronic Pain Awareness Month

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Chronic Pain: is an unpleasant pain that persists for three months or longer. It is different from Acute Pain: which comes on suddenly and usually results from an injury and can be treated. Chronic Pain may be related to several different medical conditions and more often than not, cannot be cured- only managed.

The list that follows is not comprehensive by any means, but here are some medical conditions that can cause chronic pain.

Arthritis & joint problems (Rheumatoid arthritis, Psoriatic arthritis, Ankylosing spondylitis)

Migraine headaches

Back pain (spine & hip issues)

Fibromyalgia

Neuropathy and other nerve-related issues

Lyme Disease

IBD (including Crohn’s and Ulcerative Colitis)

Endometriosis

Cancer

Postsurgical pain

Multiple Sclerosis

Myofascial Pain Syndrome

Trigeminal Neuralgia

Diagnosing Chronic Pain

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To be diagnosed with chronic pain you may need one of the following:

CT(computer imaging topography) is a powerful X-ray that makes detailed pictures inside your body.

MRI or magnetic resonance imaging. It uses magnets and radio waves to make pictures of organs and structures inside you.

X-ray uses radiation in low doses to make images of structures in your body.

Sometimes, it takes several doctors to diagnose chronic pain and you may have to conduct one or more of these tests several times before you receive the right diagnosis and can move on to treatment.

Treatment

As for treatment, there are many ways that doctors can tackle chronic pain to make a person more comfortable.

They may use transcutaneous electrical nerve stimulation, or a TENs unit, applies to the affected area.

Breathing and meditation techniques.

Biofeedback

Nerve blocks

Spinal cord stimulation

Pain meds like NSAIDs, muscle relaxers, anti-depressants, anti-seizure meds, and opioids.

Surgery to treat the conditions that caused the pain.

Life with Chronic Pain

Living with chronic pain may be the most challenging part after diagnosis. There may be feelings of loneliness; feelings like you are suffering alone and that there is no one out there who understands you or what you are going through. You may find that you aren’t able to keep up with chores like you once did and you either have to learn to let things go for when you are having a good pain day and can do it on your own or, you may have to enlist the help of some family members or even an outside source. Some of your friends may not understand when you have to cancel engagements because you are dealing with more pain than usual and you may end up finding who your true friends are. Work may become increasingly more difficult and you may have to consider going part-time or perhaps changing your profession, or maybe going back to school. Some days might be more painful than others; you may need a walking aid or a wheelchair and other days you may be able to go out and do your errands or gardening or even running. This does not make your pain fake or diminish it any way. Pain patients experience good days where their functional ability may fluctuate.

Life with chronic pain is difficult and you may have to adapt quite a bit during the course as things change in your life. You need to maintain hope even when things feel hopeless. There are still many things in this life to live for and many joys to be had, even while battling chronic pain. A support system is incredibly important and even though you may not be able to get out and be with people, the internet can be used for good and fill in that social gap. There are many communities across the internet, including Twitter and Instagram, where you can meet people who are in very similar situations and can understand what you are going through. Having these communities can boost your morale, give you something to live for and remind you that you aren’t alone in this world which can mean so much. Chronic pain can affect your mental health, so it is important to keep engaged and on to hope. If you find you are having difficulties and having suicidal thoughts, please contact someone you trust and let them know or reach out to National Suicide Prevention Lifeline.

National Suicide Prevention Lifeline

Hours: Available 24 hours. Languages: English & Spanish.

800.273.8255

The Trouble with Spoonies and Fun

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Prepping for a Concert and the Flare to follow

Every Spoonie out there understands the consequences of doing too much. I think most of us try to balance work and home and any fun we do so it won’t stress out our body and we won’t have a flare. But sometimes flares are unavoidable. There are things in life we have to do, even fun things that we want to do and we weigh the options and go for it despite the likelihood of a flare. For instance, a recent early Anniversary gift from my hubby that I have known about for months: Evanescence and Lindsey Stirling tickets. The concert was this past Saturday and I’m still recovering. It was well worth it the seats were amazing and I enjoyed every minute of it, but the venue was difficult for me though it is a beautiful place. It is outdoors, the grounds are sprawling and unfortunately, I found their accessibility lacking. Handicap parking was first-come-first-serve and even our very early arrival, several hours before the first set, we still found nothing. The venue is out-doors and from the drop-off point to the actual pavilion where the concert takes place was quite a walk for me with my cane. It is also August, in Texas, which means it feels like you are just a few inches from the surface of the sun and I fall into a category of people whose body is not agreeable to the warm temperatures. I am not sure if I am in the minority, especially when you are talking about the heat here in Texas, which I think could offend even the most tropical of people but, I seem to fare better in cooler weather. I think I must have sweat about a gallon, no joke, even after 8pm when it was dark, it was still around 85 ̊. Even after living here almost 23 years, the heat just takes your breath away. You don’t get used to it, you just tolerate it and are grateful that most of the time you are in a/c. After the concert there was some difficulty in picking me up because I had wandered too far in migrating with the throngs of people leaving and I ended up having to walk around quite a bit in meeting up with the hubby, who ended up having to park in BFE. This post is a combination of two things that occurred to me afterwards: Things you can do to ease a flare the day after and, how you can prepare for an event (like a concert) better than I did.  I don’t go out much, in truth, so I suppose that is why I’m pretty shoddy at preparing. But where I fail, you, my friend will reap the benefit of hindsight!

5 Ways to Prep Before a Concert

1.)   The Venue: Do your homework! You can’t determine where a concert will be held but you can recon the venue so when you show up it’s not all a big -inconvenient- surprise.

2.)   Parking: Make sure you know where the disability parking is if you are able to use it. If you don’t have a placard or plates, try to find the most convenient place to park that day.

3.)   Call the venue: This one is the most challenging for me. I don’t like feeling like some prima-donna who needs special treatment. Don’t be like me. I mean it. I may have suffered quite needlessly all because of my own stubbornness something that may have had a solution had I called. Having a disability and needing special accommodations doesn’t make you spoiled. You are just wanting the same, reasonable access as everyone else. So, call the venue and see if they offer any services that can assist you in getting around better.

4.)   Clothing: Make sure you are comfortable for the event and season of the event, if it is outdoors. I must have changed four times before I settled on something that I felt would keep me the coolest and I am grateful I did. The black leggings that was my first choice, while comfy, would have been the death of me in the heat department. You want to enjoy yourself so don’t sacrifice comfort for style.

5.)   Ear Protection: This is huge. Typically, we always bring ear protection with us but this time we forgot and by the end of it I was not alone in my ear pain. Not to mention it triggering a migraine that luckily, I had brought meds for just in case. We use the squishy ones for the shooting range and they do not impair your hearing of the concert, just your ears. Even two days later, I am still experiencing ear pain.

I’m sure there are more ways to prep before a concert that I haven’t addressed. Please, feel free to share them with me.

5 Ways to Self-Care the Day After

1.)   Rest: This is the biggest and most important thing you can do for yourself. There is absolutely no shame in it and your body will recover faster if you take the time out for it instead of just trying to jump back into life.

2.)   Crock-Pot-Rescue: When you plan your meals for that week of, make sure to include a crock-pot dinner, or something equally easy, for the day after the concert. This is part of self-care and resting.

3.)   Netflix and Cuddle: Or Hulu, or Amazon or Crunchy Roll! It doesn’t matter, just grab your favorite cuddle bug, sprawl out and indulge in your favorite movie snack and relax. It’s amazing what cuddling can do in combination with relaxation.

4.)   Bath or shower: Grab your favorite essential oil or bubble bath and sink in. If sinking in is not an option you can still drop some essential oils into the shower and just luxuriate in the hot water and soothe muscles and psyche while inhaling the fragrant scent.

5.)   Pamper yourself: Pick that one favorite thing you never indulge in and do it. It doesn’t mean you have to go out anywhere either. Love getting your nails done? Grab your favorite color and set up a comfy spot and paint your nails. Never have time to read? Here’s your chance! Make a nest on your bed and curl up with that book you’ve been meaning to get to. Sky is the limit and remember, you don’t need to wait for a flare to do these things either. Self-care can be any day of the week.

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The Demoralization of Not Working

LoveKarmaFood5 Comments

I stopped working almost two years ago now. I had been working for the school district for a before-and-after school care program. It was a pretty good gig at the time. It paid well and while I had to be at the elementary school at an un-Godly hour, I was done at 8:15 and didn’t have to come back until 3pm and I liked the kids. It wasn’t day-care and the kids were always engaged in an activity and I really enjoyed it. My reason for leaving was surgery. I had sacro-iliac joint fusion and not only was it a painful recovery, but I did not have the success with it I was hoping for. My reason for not returning was in-part because of the less than satisfactory result of surgery, and because of the nightmare that my chronic illnesses had become and the pain I was in and still am in.

I decided to move forward with disability and (at least in my state) I could not be working while trying for disability. Two years later, and a lawyer involved on my behalf, I still am waiting on a hearing date and have not worked. Making the decision not to work was not an easy one. I think that even those closest to me may think it was the easiest decision in the world, but it wasn’t. It was the hardest decision I ever had to make and I’ve made some pretty tough decisions. Having a job is not only something that provides for your family, but also makes you feel like you are a capable and functioning adult. When you have to decide that you can’t work, not only are you cutting out a paycheck that helps your family live better, you are cutting out something that makes you feel independent and complete.

I deal with a lot of guilt over my decision to quit working because of my health. I see how my husband has to pick up the slack and how hard he works so we don’t feel the impact of my not working as harshly. Still, when life happens and we are faced with unusual expenses like when one of our dogs became extremely and suddenly ill, that absence of a paycheck is acutely felt. It’s not just guilts about the lack of a second income, it’s guilt about not doing my part. I have two parents who worked extremely hard all throughout their lives well past the average age for retirement so they could live comfortably and because all they’ve known is work and if they were hale enough to work, why stop? I think retirement was hardest for my dad and even know he keeps himself busy at 81 years old and volunteers at the local hospital in their ICU. I am 44 years old and looking at disability and feeling like crap because I don’t feel like I am doing my part.

Not working has a unique way in demoralizing you. There are simply so many things attached to having a job or career. Self-esteem and independence and pride you feel when you do well at your job, a paycheck that is yours and that you can spend as you see fit, and the benefits that come with a job that can help to secure a comfortable future when you do retire. Not working at 44 years of age brings skeptical looks from people as well as pity. “Oh, you poor thing.” Or “Isn’t that a shame.” My favorite, “At least you’re married.” I feel as though I am no longer ranked among the adults of my age. I am an adult, sure, but an adult that has to be taken care of. I am a burden on those that I love. And don’t think I haven’t considered some very frightening possibilities, like what happens if something befalls my husband? Would I have to rely on my daughters to help me live? Would I be forced to work despite all my issues and would I be able to keep a job or would I be jumping from job to job because I get fired because I am sick? It’s humiliating and keeps me up sometimes worrying.

As I said earlier, the decision not to work anymore and seek disability was not easily made. I looked at every issue that I struggle with on a daily basis and the many jobs that might be available to me, with my education and skills and determined that the unpredictability of a couple of my issues alone makes it extremely difficult to be relied on as an employee. Debilitating migraines that come on suddenly and cripple me for anything else but laying in a dark room and praying that it will pass quickly. The IBS-d that doctors can’t treat effectively because I take opioids and so every couple of weeks I am in agony and running to the bathroom. The seizures I have, that even though I am on meds I still have absent seizures that make it dangerous to drive. The pain I am in daily, whether it is all over my body because of the fibromyalgia or specific to joints because of the RA make my life unpredictable and makes simple things like getting out of bed hard, never mind going to a job for 8-hours a day. The opioids I take for the pain which make me a risk on the road and dull my mental acuity. There is nothing I can do for long periods of time that don’t cause me pain. Standing, sitting, walking and even laying down for too long hurts. I am at risk for falling because I have balance issues and I use a cane for both balance and because my SI-joint hurts all the time. All of these factors and more were brought into consideration when I decided I just can’t work. The more? Looking at it from an employer’s point of view. Who would want to hire me? And if they did hire me how long would I last before “reasonable accommodations” became tiresome and before my absences became something they could not overlook anymore? I don’t think it would take long. Employers kind of like hiring reliable people. I am the antithesis of reliable.

I suppose my final thought would be extended to those who are able to work, to not look at those of us who can’t with disdain. We’re not being lazy. We’re not sitting around at home all day eating bon-bons. Chances are that we feel horrible about not being able to work. Chances are that we feel extremely guilty that our partner is out there working every day and we can’t help. We make a great effort to do what we can at home so that we can feel useful but it will never compare to going out there day-after-day and working, sometimes over-time and holidays to make up for the other partner needing to stay home. And understand that we are grateful. That we understand the great sacrifice of our partner has made so that we can be home. Staying home is tough.

How You Get Through Is Enough

LoveKarmaFood2 Comments

In my most recent blog post, which you can find here: http://lovekarmafood.com/2018/08/03/chronically-comparing/ I talk about the pitfalls of comparing ourselves to those not struggling with chronic issues. But I think it is also important not to compare ourselves to our fellow warriors, which is also easy to do. Many of us don’t have the benefit of surrounding ourselves with chronic illness/pain warriors in our daily lives so we surround ourselves with them in various forms of social media, read blogs, and try our best to stay connected. After all, these are the only people who truly understand our plight. The problem I find, which can cause us to struggle even more, is trying to compare how we are dealing with things to how our role models in the community are dealing with them. I’ve found myself on more than one occasion thinking, “Damn. They really have it all together.” Or, sometimes it’s not about having it all together, but how they deal with things emotionally.

The most poignant example that I feel illustrates my point is as follows: I have shared a little about my dear friend who recently passed away from a very long battle with cancer. I met her at work and she was my assistant manager at the time. Initially, I did not know she had breast cancer. She was in remission and was doing well. There is no other way I can think of to describe her, other than “a force.” Older than me by a few years, she had the energy of a five-year-old who’d just consumed 3lbs of sugar. We called her the Energizer Bunny. But more than just her energy was her spirit. She was vibrant and happy and always had a huge smile on her face. When she relapsed with her cancer and was going through chemo, she never missed a day of work and never, ever lost her smile and spirit. She is the reason I have a blog and the reason I started writing about chronic illness and pain. I watched her handle everything with such grace and beauty and be such an inspiration to so many people, I wanted to be like her. And here is where the but- comes in. But, I am not her.

It was during my time still working there that my health took a dive and I went through surgery and was searching for answers and trying to deal with my health and work and I was frustrated with myself because I was not dealing with it like she did. Here I was, not struggling, as I perceived then, on the same level as her and cancer, and I was flailing badly. Instead of power-housing through it like she seemed to, I was crying and beating my fists against the wall wondering why me. And then, I learned my most important lesson from my friend that I would only truly come to understand later. Talking to her at work, all before I would receive my two most impacting diagnosis, she would tell me very matter-of-factly, like I should have been aware of this all along, “You aren’t me. And I’m not you.” I’m pretty sure I laughed and maybe scoffed a little. Of course, we weren’t the same, right? I knew that. She continued to tell me that everyone deals with things a different way and that it was okay to scream and cry and ask, why me? She’d done enough of that too, but that she’d always been an inherently happy person and so it was natural for her to continue in that same vein and be optimistic. She added that it does help to look on the bright-side especially when the deck of cards is stacked against you but that I shouldn’t feel like I wasn’t measuring up because my way of dealing with things was different.

If it isn’t clear by now, her words had a profound impact on me. Even more-so now, writing for my blog and writing for sources whose primary readership are those battling chronic illness and chronic pain because I have read the comments left for me. Things like: “You are an inspiration to me.” “Your words are exactly my thoughts and feelings.” “I don’t know how you do it, I’m struggling just to get out of bed every morning.” I hear those words and many times I will write back and say I am just like you. There is nothing magical going on here and I struggle every day, just like you. I think sometimes people read these blog posts and wonder how I have the time, or how I manage my family on top of writing. My secret, that I will share with all of you reading in your little corner of the universe, is two-fold: 1.) I don’t manage every thing that needs to get done all the time. Sometimes chores sit undone. Sometimes I can’t write and need a long break. 2.) Sometimes I write to the detriment of other things that need to get done because it is therapeutic for me. When I get it out of my system, I feel a little better and feel like I can take a breath and tackle life again. I don’t want people who read my blog or other writings thinking I am Wonder Woman, because I’m not. I’m just a girl trying to keep herself afloat the turbulent waters of chronic illness.

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