Grief of Chronic Illness/Pain

Yesterday, I cried.
It was a hard week for me, on top of which, my partner was gone for his military duty. It’s not anything unusual, I’ve been without him for longer stretches of time. In fact, he’ll be gone for a week soon and then in the summer, three weeks. But, this small stretch of time he was gone, was profoundly difficult for me.

I’m extremely lucky in that my children are, for all intents and purposes, adults. They range in age from 24 to 18 (all girls) and my youngest, will in fact, be graduating this spring. However, we’re still waiting on the younger two, to get their driver’s license. There really hasn’t been an urgent need for them to get their license with two older siblings and with only one of us working, we’ve been trying to delay the spike in our insurance again.

I do have help from my older two daughters. I often need them to run errands or pick up one of their sisters, especially when I am not feeling well. However, with the three older ones working shift-work, there are times when it falls on me to shuttle someone to work or school or bring them home. Luckily, they do not work or go to school far however, on those days when I am feeling especially bad, there is no other choice but to press on. My function as Mom has not ceased because I have chronic illness and pain; my function as Mom doesn’t get easier on days I don’t feel well. Sisters have fights; there’s drama on occasion and I have to be there regardless if I am sick and regardless if my husband is not there. Sometimes, it’s overwhelming. Sometimes, I break.

When he came home yesterday, I had a meltdown over something stupid. I realized everyone, including him, was looking at me like I lost my mind. He’d been gone and it hadn’t been a fun time for him either, and instead of expressing happiness that he was home, I got irrationally angry over something stupid. When we retreated into the bedroom to talk the anger dissolved into tears with me nearly sobbing. I was flooded with emotion and frustration over what chronic illness has robbed me of; continues to rob me of. Four years past from when this all began and I still continue to mourn my past self.

I write about chronic illness. I write about mental health. These are things I am intimately familiar with. I often read about how chronic illness and pain can cause depression and anxiety but in the context of a person who doesn’t already have this. I am bipolar with anxiety and OCD and I can tell you, that my chronic illness and pain have a profound effect on my mental health. The only analogy I can conjure is that of torture. Chronic illness and pain are a continuous assault to the body and mind. There is no respite from it, and if there is that brief space where you can breathe, it is short-lived, as the recurrence of symptoms and pain seizes your body violently and steals your breath. Now, imagine being tortured and having to continue with your day- continue with all the responsibilities entailed in that day- with a smile. Most people can’t understand what that must be like. It was certainly the furthest thing from my mind four years ago. Four years ago, pain, was something that could be fixed.

I try to live the best life I can. Most days I wake up with a sense of purpose and a positive frame of mind. I have to. I have a family who depends on me and while they may not depend on a paycheck, they depend on all sorts of things from me. Most of all, they depend on me being there as best friend/wife, mother, daughter and friend. These are the things I think about when I’m on that downward slide. But there are times when I need to cry and it’s okay. It’s letting a little of that ‘emotional steam’ out of the pot so I don’t explode like I did yesterday. We often hear about being positive and having motivation but this life we’ve been given is not an easy one and we aren’t un-feeling things. We need to cry and flail and get out our frustration or we’ll explode and become very resentful of our situation.

Yesterday, I cried, but today is another day. I respect my tears and treat them as a stepping stone; something that is needed for me to continue to thrive in order to be able to deal with this life I’ve been given. So, let yourself cry.

Please stay tuned for more blogs this month as I devote March to Chronic Illness/Autoimmune Disease Awareness.
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The Problem With Comorbities

It all began with one chronic illness- or did it?

At times, I wonder how this all began for me. I was never the poster child for health, but neither was I on the sidelines of life as much as I am now. I think if not all of us with multiple chronic conditions, then surely a great many of us, ask themselves the ever-looming question of: ‘How did this all start? What did I do?’ I think about this often and as I have discussed in my post On Becoming Sherlock, it feels like I am always trying to connect the dots; trying to find that Holy Grail of answers to why I am sick.

Recently, I have been more frustrated with my comorbidities than usual. It’s as though I have reached a tipping point and I am not sure when it happened or if it is more related to the symptoms of each chronic issue, rather than the issue itself. In the beginning, it was pretty easy. I grew up with asthma and allergies, which often led to chronic sinus and bronchitis. But I was a kid and I suppose, while it sucked, I assumed I’d grow out of it. Amusingly enough, I grew out of a lot of things like my allergy to chocolate and cats and dogs, but my asthma stayed and when I get sick it nearly always turns into bronchitis. As an adult, I traded more child-hood illnesses for more grown-up ones and I wish I could swap.

At first, it was manageable and there was the illusion that with each surgery, I might be cured. Bulging disc became laminectomy, which later on evolved to spinal fusion. Avascular necrosis in my left hip was treated with core decompression, which eventually turned into total hip replacement. Sacroiliac Joint Fusion became SIJD Fusion. I’ve had surgeries for carpal and cubital tunnel, surgery for tennis elbow and surgery for torn meniscus. Still not feeling well, I fought to find that magic diagnosis, the reason to why I needed so many surgeries before 40. That is when the gates were thrown open and a flood of answers came forth.

Degenerative Disc Disease, Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, and Chronic Pain from failed surgeries. Let’s not forget that my Asthma did not go away, I also developed Chronic Migraine and in the mental health department I was diagnosed as Bipolar II when I was 22, but I also developed OCD, Anxiety and PTSD (which is more PTS these days as symptoms are generally controlled.) My point to all this, is when I am unfortunate enough to have to go the hospital, or have to venture out to a new doctor and I get that dreaded question of, “Do you have any health issues you take medication for regularly?” I freak out. I freak out because scene one is that I whip out my handy-dandy cheat-sheet, a piece of note-book paper with everything listed and hand it over, where I get the “look” from the nurse. You know that look. Or scene two, try to remember everything off the top of my head, which is probably not the best idea given my Swiss-cheese-of-a-brain, rattle off a handle full of stuff and sounding like I am trying-out for a High School play (a part I am not going to get) and still get the “look.” As though I am making stuff up, because, you know, everyone wants to have a ridiculous number of things wrong with them at a near 45 yrs. old.

However, after this deluge of diagnoses, I am no where near a cure and I feel the weight of these comorbities heavy, on my shoulders. I’m pretty sure you can relate, so I’m sharing with you my:

Top 6 Problems with Comorbities

• The Roulette Wheel: Constantly feeling like my life is the personification of a roulette wheel and every morning I wake up it’s the big spin of the wheel of symptoms to see which ones are going to act up.
• Symptom Management: The act of simply juggling my symptoms and trying to manage my pain is exhausting. I (we) are the center of our own universe and all of us have responsibilities outside our health. That never stops.
• Treatment (natural or medical): Another problem encountered when you treat one disease and it wreaks havoc on the other(s). You feel like you are constantly chasing your tail and feel as though you are destined never going to be able to get ahead of this.
• Ripple Effect: A flare here means a flare there, and there, and there, and there…ugh. It’s like a domino effect of your illnesses that make your head spin.
• New vs Old: Not knowing if a new symptom is just another symptom of an already established issue or if it is something new entirely, AND THEN, which doctor to call.

I hope this made you laugh, and even if it didn’t, I hope you know you are not alone. We’re all in this crazy, chronic life together and whether near or far, we’re connected because of it. As always, thank you for reading.

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The Big (not so) Beautiful Lie

When you are first diagnosed with chronic illness/pain, you are very quickly acquainted with dread and fear which are inextricably linked, in addition to overwhelming anxiety. Chronic illness and pain are something which are uniquely foreign to that which we are accustom to. These are not the flu or a cold, or a twisted ankle from tripping on a dog toy. This is something long term (hence the chronic), for which there is no easy remedy or medicine to cure it. Once you’ve been able to process the diagnosis and conquer the dread, you become more optimistic, regardless if you are naturally pessimistic. I think there is a natural, human desire to want to look at the most positive outcome when you are sick and especially, if you are in pain.

Research mode, typically follows this period of distress and positivity, and when I say research, I mean research. Whatever the ailment maybe you are delving into books, diving down the rabbit hole of Google and looking for anything you can find that might help you battle whatever it is you are fighting. You search for groups on Face Book where you can meet people who are going through the same thing, in hopes of not only finding some comradery, but maybe some clue in how to battle this thing and win. You become a person, previously with no knowledge on the subject- maybe not even knowing it was a disease at all, to someone who might as well have an honorary PhD. However, after all that fervor for learning, what happens next is very anticlimactic; nothing. You may find some things that alleviate some of the symptoms; you may walk away with a few new friends who become an extension of your support system, but you find little in the way that makes a dent in how you feel from day to day. (This can vary from person-to-person.)

Weeks go by; months go by; and sadly, for many of us, years go by with little change. What began as a moderately optimistic journey toward recovery becomes a portrait of self-criticism. What I mean is, doubt creeps into our psyche. Did I do something to cause this? Should I have changed my diet? Become Vegan? Should I have switched all my commercial cleaning agents to essential oils? Stopped drinking soda? Drank more green tea? The questions posed in this self-interrogation are endless and the questioning can continue quite a while, covering your entire childhood through your adulthood. It is this idea that if you were just able to do something different, either through your diet or what you are exposing yourself to externally, that you could get better, or better yet, cure yourself. This is the big, not so beautiful lie. This is what many of us zone in on, trying to assign blame to something, not being able to accept it might be the luck of the draw and that sometimes we simply don’t have control over what makes us ill.

Part of the fall-out from this is when strangers or even extended family members issue us advice on how to get better. There is an inward clenching and mental eye roll as we try to maintain our manners. It’s not their fault that they don’t understand, right? I wish I could be more forgiving when someone advises me on the fine attributes of turmeric, but the fact is, if I haven’t already tried it, it’s likely I know about it, courtesy of my intense research. This isn’t an effort to bash those that mean well, rather, it’s an effort to help them understand and by changing the way they word something, come across less assuming and more genuinely interested to help. Example: “You should be taking turmeric. It will help you feel a lot better. I read…” Instead, “In case you haven’t heard, I read turmeric is really good for inflammation…” or “Have you heard about turmeric? I learned it might help bring down inflammation…”
Lastly, if you are struggling with chronic illness/pain, remember it’s not your fault. Stop telling yourself these big, not so beautiful, lies and be kinder to yourself. You are already going through a lot, and self-blame will not help you.

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When Calling the Doctor Feels Like You’re an Inconvenience

Scenario: It’s been roughly three weeks since you’ve seen your doctor. He/She prescribed new meds and you think you aren’t tolerating them well. The scenario could be anything you like, but how you question yourself remains the same just as your reluctance to call the doc up.

 

In my scenario I use the word think as a descriptor in how you are tolerating the medicine because in the grand scheme of the rainbow of symptoms, we, as chronic illness patients can sometimes feel, it is not always easy to determine the why of an onset of new symptoms. It is also difficult for me, to decide whether or not to call the doc and share with them the symptom, out of fear that it is all in my head or not really worth the docs time, and that it will go away in a couple of days. If you are like me there is a certain amount of agonizing before calling the doctor. You have a mental checklist that you have to mark off, nearly all the boxes, before it is deemed legitimate enough to call the doctor. Alright, maybe it’s more like guidelines, but ultimately, it’s a way that I feel my concern is serious enough to call the doctor.

But what is serious? What is serious to you and me are probably different, and what is serious to a doctor is definitely different. I’ve also seen enough doctors that I feel I can make the statement that, male and female doctors can see things differently. This isn’t a blanket statement, just an observation from the many doctors I’ve seen for myself and on behalf of my children. This confusion, as a result of differing bodies and differing doctors can make navigating what to do when something new crops up, very difficult. So difficult in fact, that I spend quite a deal of time stewing in my own anxiety, working myself up and probably making it worse. I wish all doctors made it easier for chronic illness and chronic pain patients to come to them when they had concerns. For example, my rheumatologist gave me her email. This is a great source of relief to me because I can bypass the staff and nurses, trying to explain what is going on and just  leave a message for her. Then, she can email me back advising me if I should come in for a visit, or something else I can do to ease the problem. This may not be something every doctor can do for every patient, but there should be some way bridge this difficulty. Life is already so difficult trying to manage chronic illness/pain. The majority of us come with comorbities that include a staggering number of symptoms that aren’t always there but fluctuate. It’s also pretty common to experience new symptoms that weren’t there before. For instance, I have developed an allergy to adhesive. Never had an issue before and I’ve had a lot of experience with them. It’s annoying.

I wish there was a way to improve the doctor/patient relationship so that the patient doesn’t feel like they are bothering the doctor and the doctor doesn’t feel like the patient is calling all the time. I do understand the need for a doctor to have some off time where they aren’t on call every day and every hour. I also think it is important that the patient feels they can come to their doctor with issues and not feel like they are troubling them. I don’t mind waiting until the end of business hours when they are not busy caring for other patients to get a call back. I don’t even mind if they just leave me a message. But I’ve had doctors not return my call for days, after which I had to take myself to the clinic, where I ended up needing additional meds. I’m not saying I know how to fix this issue, but I think it would be great to open up a discourse with the input of patients, to see how it could be fixed.

 

High Functioning and Disabled

What you see

is not how I feel.

A carefully crafted exterior

ghosting past 

friends, family and strangers

with that perfect smile-

doing everything I’m supposed to,

or close to it.

While in private, I collapse.

In private, I cry.

In private, I fall to pieces.

But before you see me again,

the pieces are taped together,

the smile arranged into place,

and the carefully crafted façade

is all you will see.

 

I first realized how dire my personal battle with pain was almost 15 months after I stopped working and I didn’t feel a noticeable difference. There had been some hope I’d been harboring, mostly in secret, that a little rest and relaxation would somehow, miraculously cure me. That truly brought the complex nature of my chronic illness/pain, into sharp focus for me. What was worse, was that now that I was considered a “house-wife” (and while I could write a whole other blog on the misogynistic origins of that term, what I simply mean here, is: not working outside the home) it seemed that I was even more busy than when I was working. There is this pervasive idea, that not being employed outside the home makes your life easier, when in fact, it does not. It does afford me some luxuries that working did not, such as: being able to take a nap when I need it, or the ability to spend a lot of time in the bathroom when I need to, but much of the time I am just as busy, or busier, than when I was going out to my job. Oh! And I do not get paid! However, this ill-descriptor leads both men and women to look at you with a measure of contempt, as though some great weight has been lifted from your shoulders and you should be elated and profoundly grateful for your situation. Oy…

 

Let me start by saying that I do not feel any resentment toward my “outside-working-counterparts.” I can’t fault them for their perceptions, however skewed it might be, partly because of how all facets of the media portrays those of us who stay home. I’ve mentioned before that lovely, turn of phrase, “staying at home and eating bon-bons.” Makes me grate my teeth till my jaw hurts, but I get it. At the same time, it’s those ill-conceived notions that make life so much harder for us who are struggling with chronic illness of chronic pain and spend the majority of our time at home. To bring this all together (finally) is that people, including friends and family and a good number of strangers, see me and many of us in the chronic world, as “high functioning.” Let me add here two things. The first, is that those who actually go out to work have an even harder time than I do. Their peers only see an individual who functions at work like a healthy person. The second, is that I added my situation within this definition of high-functioning because I consider my blog and my free-lance writing, my work and I also manage my house and everything that goes with that, from grocery shopping to cleaning and I also have all four of my children still living at home, in various stages of adult-ing. We are all seen as “high-functioning” though I would use “surviving” in its’ place. Many of my fellow warriors have no choice but to work. I have the luxury of being able to stay home, though “luxury” is not the word I’d use because we struggle a lot. I have a good partner, an empathetic partner, who knows that working outside the home was not only physically difficult, but mentally draining. I don’t want to be the kind of employee who misses work all the time or can’t keep up with my share of the work. It kills my self-esteem.

 

My biggest problem with “high-functioning” is that it fails to acknowledge my daily struggle. It fails to acknowledge the vast number of us that are defined this way solely because we’ve mastered the art of blending in. We’ve become as adept as a chameleon in masking how we feel because life does not simply come to a halt because we are having a bad pain or flaring. There is also a fear, for some, that if they are open with their situation that they might not have a job in the future or, that their employer may begin to scrutinize their work, looking for an excuse to let them go out of fear their job performance will eventually suffer. Slyly hiding within all this is the blind-eye we also feel from family members and friends and even strangers, with regards to our pain/illness. It never fails to surprise me how even those closest to me, evade the obvious.  It’s as though if they ignore it, it’s not there. There is also the continued attempt at comparing how I feel to how they feel after they’ve had a bad day. It puts me in quite a pickle because on one hand I am mentally screaming at how obtuse they are while on the other hand, I don’t want there to be this conversation about how I feel so much worse and ticking over the infinite number of symptoms and reasons why it’s not the same thing. Finally, there’s the pity that seems to be the go-to when they don’t know what else to say. I don’t want your pity, I don’t want to hear some cookie-cutter sympathy. I want you to stop for a minute and try to have some empathy. I want you to try to understand that while I might look “fine,” I’m far from fine and you don’t have to be psychic. What I have will never go away. You sprain your ankle or twist picking up a box, you might hurt for one or two weeks. I won’t ever wake up and feel better. You ache and feel miserable from the flu. A week later you’re up and around feeling better. I flare and feel like a train hit me sometimes and that won’t go away. It might for a few weeks, but it will happen again and again, no matter how hard I try. But I’m “high-functioning.”

 

It seems ridiculous to label someone “high-functioning” when all we are doing is living. Is there another option? Maybe I am being too sensitive about a label that implies I am doing pretty well for what is going on with me, but when that definition misleads people and gives them the wrong impression? Yeah, I take issue with it. I might look like I have it together, but I’m still disabled, I still struggle and the pain is very real.

Mistakes Made When Traveling

With Chronic Pain/Illness

 

We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).

 

  • Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
  • Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
  • IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
  • The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
  • Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.

 

I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.

 

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Chronically Seeking

I began the day writing about one thing and after a doctor appointment, decided to take a different route and write about something else. Something that I think many of my Spoonie friends out there understand. I am sitting here feeling frustrated and angry and like I am not being taken seriously. I feel like I have little in the way of choices and I wonder how many of you feel the same way I do. I am talking about our doctors.

Don’t get me wrong, I am not on a doctor witch hunt. I have and have had, excellent doctors. In fact, if it wasn’t for a few doctors I have had, I might not be here writing about this. So this is not a hate filled rant against doctors; this is, instead, something inspired by frustration and feeling very much like I am caught between a rock and a hard place.

This doctor that I speak of has not been terrible, either. In fact, for the most part, has been very good and very helpful. However, I feel that we haven’t been on the same page for a long time and in recent months, I’ve felt our paths diverging even more and also feeling as though they, too, are feeling the frustration of a patient with no clear “fix.” There is also a sense that they are focusing on me in parts and not as a whole and the problem with this view, in my opinion, is that these parts cannot be fixed because they are part and parcel to a much broader issue- Chronic illness, which, the majority of doctors do not know enough about. Instead, they look at parts. I can’t tell you how many surgeries I have had that were needless, because no one was seeing the broader issue. While I do have a doctor treating me for the broader issue, I still have other doctors who are integral to my treatment who don’t always have the same opinion.

This is my question and why I am writing this: if you don’t agree, how do you go about getting a second opinion, or looking for another doctor completely? For me, the first place I look is always my insurance. Are they on my insurance? Then, I typically look at where the doctor is located, because I am relying (most days) on my two eldest to drive me. It can be complicated with kids who are working and going to school to find an appointment, but I manage. The next thing I will look at is if there is any kind of feedback on Yelp or other doctor rating sites, because they help in deciding whether or not this might be the right doc for me. I understand that not all the reviews are honest or fair, but I try to come to my own conclusion. After considering all these things, I am not left with many choices. Using this as an example, only three. Two of which I have already seen and have proven to be as horrible as their reviews, and then my doctor. So, what is a patient left to do? Grin and bear it? That seems to be the motto among chronic patients everywhere because I think besides being limited in who we can see, there is also an overwhelming feeling of exhaustion because we have had to see so many doctors. We’ve had to weed out the good from the bad, sometimes after extensive testing, only to have to start from the beginning again. It’s tiring and emotionally exhausting.

What to do about it? I was sitting here brainstorming what I could do and then something funny struck me. Want ads. They should have want-ads or maybe a website catering to the chronically ill who are seeking physicians. I can write a great one. It would go something like this:

I am a 44-year-old, chronic pain and chronic illness patient. I am looking for a kind, empathetic physician who understands my plight and who can think outside the box. Moreover, I am looking for someone who isn’t afraid that I know more about my illnesses than they do, who will integrate a holistic approach, meaning looking at me as a whole person and not just parts that might be damaged. An added bonus would be someone who isn’t offended that I want to be a part of my care and not just simply follow directions based on their advice because I understand my body and how I am feeling better than anyone.

I think that is a brilliant ad, if I do say so myself, but I am not sure there would be any takers. Still, if anyone is considering an app that pairs up doctors to their patients and vice-versa, I’m all in. Until then, I remain, chronically seeking.

 

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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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Self Triage

In the whole spectrum of the chronic illnesses that you manage, do you ever feel like you have to triage yourself? That some issues get more attention than others because they are the more ‘serious’ of your diagnoses? Then you find yourself maybe a year later, realizing that you still haven’t even tried to seek help to sort out that particular issue? Welcome to the madness of multiple chronic illness.

When I first began this journey I really had it planned out. Not figuratively, but very literally. I was going to start with the first issue and work my way through everything that was going on and I was going to systematically go through each and every one of them. The reality, however, is much different, at least for me. The reality of the cost of medical care, even while having insurance, is sometimes staggering. The idea of having to add another specialist that costs $35 each visit and that sometimes requires more than just one, monthly visit is incomprehensible. Add on to that the cost of medicine, that may or may not work and the need to try one after the other, after the other, until maybe you find one that works. Don’t forget that not all may be generic and you may spend $45-150 on a medicine that you throw out after only taking a week or two worth. There’s also any testing that needs to be done to help the doctor diagnose the problem which can be anything from blood work to MRI’s and can cost a frightening amount dependent upon your insurance. Insurance feels like it’s changing regularly now. Ours used to be excellent and now I find I have to pay for things or meet a deductible for things I never had to before. And the expense has made me think about what is important or not, what can wait or not, no matter how it is affecting me and my ability to lead a relatively normal life despite my conditions.

I’ve dubbed this a sort of personal triage. The way nurses do this in a hospital waiting room. Weeding out those who are in dire need of assistance and those with problems that can wait. For instance, I can never rationalize the cost of a hospital visit even during a bad migraine episode or when my pain levels are uncontrolled. It does make sense to me to pay $250 (plus whatever they might give me that is not included in that $250, that you get billed for later) to get a drip of medicine or even turned away because they can’t do anything for me. It’s not like I’m having chest pain and I don’t know what is going on with me and I need a doctor to see me. I know my diagnosis, I even know what might help me in terms of medicine, but the cost is too steep. I know many in this situation too. It becomes this game you play when things get bad where you are pretty much taking things hour by hour, seeing if you can get through the next and next and maybe things will get better. This doesn’t just have to do with hospitals either.

The one diagnosis I have that I have only been treated minimally for is IBS-d. Irritable Bowel Syndrome of the Diarrhea variety. I have seen two different gastro-docs, had a number of tests done and have been branded with this particular diagnosis. However, because it is the -d type and I take opioids for pain, there is little they can do. The popular brand of medication to treat this can inhibit the opioids from getting into my system, which means they can treat the -d problem but my pain will go through the roof. This is what happens with comorbidity. So, the IBS-d has gone into the ignore pile. It’s there, but I have felt that in the grand scheme of things wrong with me that the IBS-d can wait. In the meantime, I have to deal with unpredictable, painful flares that truly inhibit my freedom and typically make me feel like a ticking time bomb. Things most people take for granted in the “Chronic-free world” like, going out to lunch, might as well be some Mission Impossible themed task. It doesn’t matter what I try to do, what I try to avoid, how ‘stress-free’ I try to make my life or what IBS-themed diet I try. It happens without warning and therefore truly complicates my life in ways that these more important chronic issues, don’t. It is frustrating all around and on some level, I realize that it is ridiculous to put off maybe finding someone creative enough that can offer more ways to help me, but it’s a vicious circle of complicated, chronic illness that continues to shuffle the IBS-d into the “It can wait” pile.  The IBS-d isn’t the only issue that has been largely ignored.

Since the beginning of my treatment at pain management I have expressed multiple “pain areas” to my doctor. However, in this case, it was the doctor who triaged me, saying from the get-go that he only treats one issue at a time. It’s been two years that I have been seeing him and he is still focused on my sacro-iliac joint pain, for which I tried numerous ways (both non-invasive and surgery) to deal with and here I am, still with the same pain, maybe even worse and still waiting for him to address everything else. Every time I go to see him I fill out this questionnaire on a tablet, which asks me to highlight my pain areas (about 4) and we are no nearer to addressing them. Recently, I was talking with my husband about it, trying to sort out what I should do about it but there is basically nothing. I am forced to continue with this treatment plan devised by the pain specialist because I don’t have anywhere to go. I’ve seen other pain specialists who were horrendous and he is the last on my insurance close enough for me to drive to. If I want any semblance of treatment, for which I am acutely aware many in my situation don’t have, I need to stay put and have patience. It’s just a vicious cycle of triage, on our part and the medical world, never really getting treated as a whole, but piece-meal and ultimately, never really feeling better.

As always, thank you for continuing on this journey with me.

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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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