The Trouble with Spoonies and Fun

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

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.

Tips and Tricks to Fight the Fog

Let me begin with a brief story. Some of the details are changed because I can’t remember clearly, but here is the gist. I was looking over what to cook for supper and realized that I needed some chicken out from the deep freezer we have in the garage. It goes something like this: “Hey! Could one of you go into the [draws blank] the…uhm…[insert expletive] that white thing, you know, in the garage…it keeps the food cold?” Children reply, looking at me like I lost my mind: “The freezer, Mom?” YES! Freezer! Why couldn’t I think of that? This is my life. And my brain fog seems to be word related which I find amusing because writing is what I do. It does stretch out to other things. Sometimes it’s just a general fogginess or feeling like trying to access anything is like running through pea soup.

Brain Fog: often described as feelings of mental confusion or lack of mental clarity. Quite literally, it can feel like your brain is submerged in that thick, soupy mix that makes it difficult to drive home in, only it’s your brain. It is a symptom that is common in many auto-immune disorders and is by far, the most frustrating. It’s a symptom that is not addressed by doctors which often leads us, the patients, feeling like we are going a little crazy and pushes us in search of others who are experiencing it. It is here, we learn of tips and tricks to combat this most frustrating symptom. Let me share with you a few I have found most helpful. Not all may work for you, but it might be a jumping off point to giving you some ideas that would work for you.

13 Tips and Tricks to Beat Brain Fog

Don’t Trust Your Brain: I know that sounds ridiculous but I don’t mean for everything. What I mean is when you go to the grocery store to pick up those five items you really need, don’t trust your brain to remember because I promise you it won’t. It’s a bitter pill to swallow but your brain is not the efficient, infallible machine it used to be. Just accept it and move on. It doesn’t make you less of a person It just makes you human and all humans eventually encounter a struggle with memory. The sooner you accept it the better you will feel about yourself, especially when you use some of these tips and tricks.

List! List! List!: Grocery list, Things to do list, random lists of any ideas you might have for any project you want to get to, lists!  I love lists. It is a simple way to keep track of things that doesn’t take a lot of time or effort. The only problem is if you get distracted and forget to put it on the list. This has happened to me before. The only way I know to combat that is writing it down when you think about it. I’ve had to tell people to leave me be for a few minutes so I could write it down right then and there. There’s nothing like staring at a list of let’s say, items you need to bake a cheesecake and knowing you are missing one thing but can’t recall what that one thing was. Maddening is what it is.

Post-it Notes: Something a little easier is the old-fashioned post-it. I love them because they are small and they can stick virtually anywhere. If I am writing and my mom calls me and I can’t break away because I know if I do I won’t remember what the heck I was doing, bam! Post-it note: Call mom! I’ve even gotten to using One Notes too, which is great, but I’m pretty slow in techie related stuff and I am very tactile so there is something for me, about the act of writing and where I am sticking the note, that I will recall everything better. Whatever helps!

Planners:  Sadly, planners are not my thing. But they can be help to some people and therefore I included it. Maybe I just haven’t found my perfect planner yet? We do use Time Tree App as a family, which is a planner. Pretty basic in terms of planners but it helps everyone in the family know where everyone is going to be at a given time. This is huge because there are times I need someone to take me to the doctor or someone to pick up a sibling and know I know where everyone is. If you are managing a family and sinking into the chaos that can be when having kids and activities, give this app a try!

White Board: Yes. The infamous white board that you see as part of Dorm Room Must-Haves. It’s okay to have in your 30’s or 40’s or older. I promise no one will judge and if they do, who cares! I have been utilizing the white board since my 20’s when my kids were younger. I have a huge one in my kitchen where everything from Chores for the Day, Things I Need, and Random Notes gets slapped on there. I keep the dry-erase markers in a draw right next to where it’s hung up and sometimes even very random thoughts get written on there because it’s so handy. It is by far my most favorite item on this list. If you don’t like white boards, I know they have really cool chalk boards too! Easy DIY frame up and you have something sweet to hang up wherever you are inclined that will help you keep things together.

Memory Book: This isn’t your arts-n-crafts type of memory book, but you could definitely decorate it if you want to. It’s where you write down anything you think you might forget, however you want to write it down. So, if you’re a bullet point kind of person, go crazy! You write things like: Oct. 22 Put my keys on the shelf because I have to go out and pick up Bobby from band practice in an hour. That way you aren’t like me, and you are hearing the chime of the clock saying you have to go, and you can’t find your keys. And it works for anything. Have a meeting? Jot it down? Need to pick up eggs? Write it down? Hiding those holiday presents early, so no one will find them, including you three months later? Write it down. It can be as much or as little as you want, and as decorative as you want.

Routine: This can be difficult if you aren’t a routine sort of person. And let’s face it, not all of us are. My husband very routine oriented. His wallet and keys go in the same spot. He goes to bed at the same time. Gets up at the same time. He is a well-oiled machine and it makes me jealous. Me: It depends. I have a skeleton outline of a routine, but there is nothing set in stone. I blame my chronic illness, but maybe it’s me. I’m not the kind of girl who just decides to see a movie on a week-day because I can, because there are too many variables health-wise, but I don’t have a rigid writing schedule or work schedule or anything schedule. About the only thing that is set in stone is dinner, and guess why that is! If it works for you, great! It can help with some of the memory issues, like if you forget where you put your keys or tennis shoes, but for me, other than that it just doesn’t work.

Sleep: Here is another that you shouldn’t go crazy over if you can’t do it, but having a set time to go to bed and set time to wake up where you are getting your allotted 8-10 hours of sleep, is great for you and your brain fog if you can manage it. Me, on the other hand, I have begun telling people I am on Cthulhu time. Or possibly on Australian time zone. I never know when I might go to sleep, though I tend to wake up early no matter what. I’m sure this exacerbates the ol’ brain fog, but I have found it drives me nuttier if I try to be like my husband and retire at 8:30 and fall asleep at 8:35. It just doesn’t work.

Unplug: Do it for an hour. Do it for a day. Be daring and do it for an entire weekend. It may take a little getting used to, after all, we live connected. But if you look at how we are connected, it’s not in the healthiest of ways. I do see the benefit to being connected, unlike some. Many of us live isolated from the world because we aren’t able to get out and if we did, we don’t have the friends to do it with because we lost out friends when we got sick. Social media is how we stay connected and how we maintain relationships outside of our immediate family. Still, I don’t think any of us can say we haven’t gotten angry at our social media, or been harassed or degraded by some troll. This can have a huge impact on our brain fog because if we are in a tizzy over what someone may have said, or something we’ve read, what little focus we have goes out the proverbial window. Do yourself a favor and try and unplug for at least an hour a day. Listen to your favorite music, read, or partake of your favorite hobby. You’ll be surprised how by giving yourself a little time away from things can really improve your focus.

Multi-tasking, it’s over-rated: This is the reign of the multi-tasker. How to get the most done in the least amount of time, which, to the proponent of multi-tasking, equates to being more efficient. But hit the brakes for one moment and ask yourself a question. Is multi-tasking doing what it claims it can do, for you? Some people thrive on doing eleven different tasks at once. I am guilty of it. I may even live under the illusion that I do well at it. I have often joked that my brain functions like a laptop with ten different tabs open, two are unresponsive and I have Spotify and Pandora playing at the same time. In other words, chaos. I know that when it’s just me and my writing and maybe some instrumental music in the back ground, that is when I perform the best. You can apply this to all parts of your life. If you are running around, trying to do laundry, pick up around the house, get some play time in with your kids in between loads and vacuuming and watching that latest episode on Netflix, you are going to forget in-between, half of what you were trying to do. Streamline your life a little bit and you may find it helps with the fog.

7- minutes to a less foggy day: Exercise is known to boost oxygen and blood flow and therefore boosting your brain power. All it takes is 7 minutes. That’s it. This is not a 30-minute workout condensed into 7 minutes where you feel like you ran the Empire State building 3 times. You do what you can, within your ability and capability, to where you feel like you’re revitalized and call it done. It can be stretches in bed- yes, I mean it, right from your cozy comforter and heating pad. You can sit on the edge of your bed and do some leg lifts, some stretches, anything. I’ve started doing yoga again. I was a yoga instructor. Then, my body failed and I felt like I’d never be able to do it. Then it occurred to me that the whole joy about yoga is doing it for yourself. Not doing it because I want a better physique, or because I want to be able to contort myself into a pretzel. For me and for the pleasure and peace and balance it brings me. So, I started again, and it’s slow, and I hurt but I did it. At my speed and with my modifications and that is my 7 minutes.

Zen your way to less fogginess: Meditation is good for the soul and good for your brain and good for the fogginess. I know, it’s hard. But you don’t have to cartwheel into 20-minute meditation periods. Start with 5 minutes. Seriously. Meditation is about being present and being aware and not about thinking about the casserole you have in the oven while you are meditating. Take some time out, where nothing and no one will disturb you and meditate. There are plenty of books, plenty of places to start with simple meditation. My favorite jumping off point is candle meditation. It gives you focus and you can work on length of time. Do it a few times a week and jot down if you notice differences in your brain fog.

Food Triggers: There is a lot to be said for food that triggers brain fog, however, I have not done enough research to understand who or what the culprit maybe. There are a whole range of auto-immune disorders that can cause brain fog as a symptom and depression can also have the symptom of brain fog, as well as other mental disease. But looking into what and how you eat is important so I’ve included three foods which are guilty in causing or worsening brain fog.

1.)    Gluten: I know, everyone is hatin’ on the gluten, but in all honesty, even if you don’t have celiac disease, gluten can be a huge issue. You see, over time consumption of gluten can lead to low or even high levels of inflammation. This can greatly impact brain functions and one of the symptoms is brain fog. I’m not saying ditch the gluten entirely, but ditching it maybe 50% of the time can make a huge difference in how you feel.

2.)    Refined sugar and carbs: As with gluten, long term and chronic intake of carbs “white flours” and refined sugar and corn syrup, this can lead to glucose problems as well as systemic issues. The yeast over growth can cause symptoms like fatigue and brain fog.

3.)    Caffeine: The dangerous pick me up that we all crave. It can lead to brain fog as you spiral into a habit of more and more caffeine to give you the same pick me up as it did the first time. Ever have a caffeine withdrawal headache? Talk about a bad day… If you are consuming more than 100mg of caffeine a day you should try to break the habit. Look at how much sleep you are getting first off. You are more likely to fall into this vicious cycle if you are not getting at least 7 hours sleep. If you just like the taste of coffee, for instance, try blending caffeine and decaf until you can go completely caffeine free and also try a darker roast for a more satisfying cup.

How You Get Through Is Enough

In my most recent blog post, which you can find here: https://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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Chronically Genetic

Ever since I can remember I wanted kids. Growing up as an only child I fantasized about having a large family. I envied my friends who had siblings and my cousins who had dozens of cousins themselves. I had two cousins, who I adored then and still do. Also, I am adopted. I think this, in and of itself, ignited a desire to have children. I wanted to look into the face of another and see myself, or even little traces of myself in the form of similar expressions or shared talents. When I thought of having little girls, I pictured them borrowing my clothes; earrings, sweaters and jeans, because I was going to be that cool mom. I don’t think I ever thought I would quite so literally, share my genes with them but, I wasn’t diagnosed with many of my issues until after I had kids. Not that knowing would have changed my mind about having kids, I just would like to think I would be more prepared.

The reason for my writing this particular post is that my 23 year old daughter was just diagnosed with fibromyalgia and may possibly have rheumatoid arthritis too. I had sent her to my rheumatologist because she and I have had similar issues and since learning from my rheumatologist that some of the surgeries I have had may have been unnecessary, I decided it was in her best interest to see the doctor before having any more surgeries herself. When she got home, it was: “Guess what? You have a fibromyalgia buddy!” I can’t express enough my surprise. I really thought, if anything at all, we might share the RA, but not the fibromyalgia. She explained to me that our doctor also believes she has the RA, but of course we have to wait for lab results.

I spent much of the night doing even more research on RA and the gene link. Sadly, while researchers do think that certain genes may increase your risk of RA, they also don’t consider RA to be a genetic disorder meaning, geneticists can’t calculate your risk of developing RA based on your family history. The story isn’t much different for fibromyalgia. While research so far concludes that fibromyalgia isn’t passed from parents to children, the odds of developing fibromyalgia is much higher in immediate families of people with fibromyalgia than in families without any history of fibromyalgia. The remaining part of my sleepless, evening entailed a growing frustration over how these two illnesses manifest themselves. Primarily, in regards to fibromyalgia because, insomuch as what I have learned, what precipitates this is trauma of some kind (physical or emotional) or an infection. There is no trauma that readily comes to mind, that I can say “Yes! This must be what caused it.” Likewise, there is no illness that comes to mind as a trigger for fibromyalgia. In looking at my own life, I have had both trauma and infection that I could choose from as culprit for this illness and so for my daughter, all I can come up with is hereditary.

In some ways I wish genetics had nothing to do with it because I feel like I am somehow responsible for it. In other ways I hope it is genetic because, if the medical community can look into families with a history of fibromyalgia, maybe it will help in the development of a cure for it or at least an effective medicine. I know many other disease/illness studies have benefited from being able to trace family history and the hereditary nature of it. At the same time I don’t think it should take something like hereditary to bring awareness to a certain disease, however I do know that unless there is awareness people do not like to open their purse’s to donate unless they have certain facts and I certainly don’t have hard feelings about it because none of us can afford to give even small amounts, to every organization in need of it.

As for RA, it seems gene factors account for 50% of the risk in developing RA though the cause of RA is still, ultimately unknown. Everything from genetic, hormonal, immunologic and infectious factors may play a role. Too, it would seem that socioeconomic, psychological, and lifestyle factors such as tobacco use, may have an influence in the development of the disease as well as the progression. I really hope that there is an eventual concrete cause for this disease. Though I am at a loss as to between RA and fibromyalgia, which might be the worst, they both deserve more research and more funding.

I hope my daughter has a better outcome. I think that even if the biologics work to manage my RA that there has been significant damage done already and because I still have the fibromyalgia, which there is not only no known cure, but no known effective treatment that works for everyone, that the future doesn’t look as bright. I’ve already watched while these illnesses have stolen a tremendous amount of my life from me; I am not prepared at all to watch it steal things away from my daughter while she is still so young and vibrant. There are many young men and women who have one or both of these illnesses. I think they are remarkable and brave for pushing past it and going on with their lives. I think it is natural for me not to want my daughter to live in pain, but I do know for a fact that she would not let it stop her either and she hasn’t.

I know that I did not give this to my daughter, or any of my daughters, in the event more of them develop this too. I simply feel that as a mother you bear a certain amount of guilt when your child gets sick or develops an illness such as these, where it is likely to affect them for the rest of their life. Also, there is the inherent desire to protect your children from all bad things. I know it’s not rational, but children are the most important and precious thing we have in our lives.

The Injustice of Multiple Chronic Issues

Dealing with one chronic issue is enough, but many of us struggle with two or more chronic issues. I am one of those people and it often feels overwhelming. It can also make a situation where you are already wondering, “Why me?” feel even more despairing. It can also make some people more inclined to feel as though their situation is somehow worse than the person only dealing with one or even two issues. I have seen this on many social media groups for chronic illness/pain and have watched as people from both sides, if you will, and also male and female, be reduced to this childish argument over who hurts more or who is in worse shape. I am here to tell you that we’re all in the same boat of injustice, where we are the lucky winners of chronic illness/pain for probably, a lifetime. It does absolutely no good to anyone, to argue about it.

The Snowball Effect of Chronic Illness

The majority of my life I have dealt with some chronic conditions, like asthma and bipolar, as I shared with you in my previous post, Chronic Pain Un-Filtered. However, these issues were, for the most part, well controlled and it never weighed on me the way my current situation does. In the beginning, what started out as hip and back pain seemed to snowball into this overwhelming list of issues that was accompanied by an even bigger list of medications. I remember distinctly feeling like “Why me? What did I do to deserve this?” I felt like I was a relatively good person in the grand scheme of things and actually contemplated some reasons for my ill-health as my not being Christian or having neglected myself over the years with diet and exercise. But these are no more valid reasons for why I have some of these chronic issues than it would be to say that hurricane Harvey was the result of people’s diminished belief in God or some decline in morals over the years. I am not altogether certain why I have so many chronic health issues, but I do and what is important for my future health is not to place blame on myself and something I failed to do, but try to do things which will improve my quality of life for the future.

My Chronic Illness is Worse than Yours

I’m sure when you read this you will hear how silly this is but I think some of us and me included, have felt like this at one time or another. Now to be fair, there are some chronic issues that are worse. They can inflict more pain in someone than another person or require far more hospital visits or doctor visits, but even pain is relative and while one person may feel pain on a 3 level, another person might feel the same as a 7 level. Which then only leaves the argument of doctors and hospital visits, and because there are multiple chronic issues going on, you have the potential for all sorts of problems. Medication interactions that might be bad, flares that can stress on the body of a patient with multiple chronic illnesses and which might wreak havoc with other issues. Ultimately, this argument is moot. Even though we might share one, two or three chronic conditions, we are not the same. Which is why one treatment may work for your friend who has the same chronic illness but may not work on you. I think it is imperative for us to stick together. In solidarity, we have a better chance at bringing to light chronic issues and perhaps encouraging even more research. In solidarity on social media and groups for people with chronic issues, we can show one another support and raise each other’s spirits rather than breaking them down.

Moving Beyond the Personal Injustice

I want to stress here that we are all human. There are going to be days when we feel angry and sad and betrayed by our bodies. There is no getting around that and I am not here on some high horse to say that I never feel like it is unfair that I have multiple chronic issues. I probably feel that way at least once a week and maybe more when it gets really bad. But the important thing is to recognize it and give you reasons to get past it. No one ever said life was easy. No one ever said it was going to be sun-shine and roses all the time. I think the very nature of being human is very, very difficult and we are always going to find ourselves in difficult situations where our spirit and our ability to be compassionate are put to the test. I think what is important is that we strive to keep going even when we feel diminished and defeated and that we try to extend our compassion and understanding to those going through similar things. I also feel that when we do these things we feel the effects just as readily as when you give someone a hug and it makes you feel better too.

Sometimes You Just Need To Cry

In tears there can be transformation and renewed spirit.

Those of you who follow me on Twitter or Instagram probably have an idea of how the last two weeks has been for me. It hasn’t been great and I have not done a very good job at practicing what I blog either. I think this is a very harsh but honest reality for all of us struggling with chronic pain/illness, or any one with ongoing health struggles. As a writer and avid reader, I see so many good and great ideas about how to stay positive, stay motivated and strive to live the best life we can amidst the struggle of our illness, but when you are caught in the very real pain and very real, deluge of symptoms that you feel like you are drowning, it’s not so easy to keep those mantras alive in your head or remember those 7 Fantastic Tips, because all you want is to melt into your bed, pull the covers up over your face and just cry.

I get upset when people call it “Feeling sorry for yourself,” or having a “Pity Party,” or something equally insensitive, because sometimes we need to just cry, scream and rail against the world. We need to because it helps us in the end, get back up and face it all over again. I feel that in some ways it is a metamorphosis, maybe because I have a thing for butterflies and have several tattoos of butterflies, but the life cycle of a butterfly signifies change and I feel that each time we fall, and break down and cry and scream we are changing. If you get stuck in that phase it is obviously not good, but if you let it out and dust yourself off and continue the tough march onward, I think it does help you. Sometimes through tears we find a way to push ourselves forward again. It’s healing.

Now, all that being said I am working on my blog post and will make every effort to get it out by Sunday, which seems to be my personal deadline for my blog. My idea is a series of posts over Women and Chronic Pain. I want to discuss how doctors relate to us differently than men, I want to talk about why women feel the need to apologize for being sick, whether we need to explain ourselves at all. I often find myself in this position where I feel this need to explain myself to people about my illness; I find myself searching for ways to help them understand when in fact, will they ever really understand? I mean I don’t think those closest to me really understand so how can strangers or just acquaintances? So stay tuned, I have not fallen off the grid and I am fighting