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Chronic Pain: What Goes Unsaid

If there is any benefit to being a chronic pain blogger, it’s that a door is suddenly thrust open on an entire community you had no idea existed, or maybe were in a certain amount of denial about existing. Each blog post, each step forward into social media and chat boards dedicated to chronic pain/illness sheds light on each face and each voice out there who is struggling with the same thing and suddenly, you are not alone. At the same time you become painfully aware of how many others are suffering right alongside you and it can steal your breath away. I am trying to use my voice in the community to shed light on a community that is still alienated by the world.

We are outsiders, living on the fringes of the medical community because there is no easy fix for us. Many doctors don’t believe us; many doctors have thrown their hands up in the air and given up and some have their hands tied behind their back, unable to help us because the laws make it so difficult to prescribe meds they believe will help. So here I am, juxtaposition between being a part of the community and one of the voices of the community wanting to bring to light the many faces. Sometimes, in order to do that we need, we have to put ourselves out there and I try to do that on my blog and here but vulnerability is scary. It’s scary to everyone but I think a little bit more so among the chronic community because we are already vulnerable and the idea of making ourselves more so, is not ideal. But in an effort to make it real I want to share with you the very stark reality I find myself in the midst of. I’m sure some of these feelings others can relate to but these are mine.

• I am afraid. I live in this cycle of fear that grips me sometimes so tightly I can’t breathe. I fear for tomorrow, I fear for 20 years down the road and every moment in between. I don’t want to be a burden and despite all they say about marriage and taking care of one another through sickness and health, I wasn’t really planning on my husband to have to pick up a role as caretaker when I am 43 years old. I’m supposed to be the one taking care of everyone and I’m supposed to be the one caring for my parents and I feel awful I can’t help them more.

• I feel guilty. I feel it for things I don’t think you should feel guilty for, like being happy. I feel guilty for finding joy in my life and smiling because I worry that people won’t believe I am sick. You remember when you were little and maybe tried to get out of school by playing sick and mom caught you playing in your room and there went your dreams of lounging in the house all day? That is pretty much what goes on in my head. But what people don’t understand is that when you are in pain 24/7 that you become accustom to being in pain. So when I smile at something silly my cat did or a laugh at a funny show on television or just exhibit any normal sort of happiness I want to let people know my pain wasn’t miraculously healed. But I refuse to allow this to take that away from me.

• I’m still waiting for this adjustment period to end. It’s been almost four years since this all began and I am still…trying to adjust to it all. People have told me that I just have to accept this ‘new normal’ and press on, but I don’t understand, for the life of me what that means. I don’t understand how to define or quantify a new normal. I liked my old normal. I liked me and what I was able to do every day. This stranger I see in the mirror doesn’t fit with who I am in my head or my soul and it’s very difficult to be reminded minute by minute of your limitations. It also feels like something new pops up from month to month, so there is no plateau of symptoms that I can just get used to and work around.

• If fear and guilt were not enough how about a side dish of demoralization? I suppose it goes hand in hand with the fear and the guilt because the feeling of demoralization stems from everything that has been ripped away from you. Everything that once filled my life and made it joyful and exciting was systematically taken away until it felt as though I was standing on an empty playground. When you are reduced to staying in bed, or glued to a recliner like I am sometimes because even the bed gets uncomfortable, you begin to wonder why. What is my purpose, why do I exist, where do I fit that I can be useful? The demoralization of chronic pain is punishing.

I want to believe I have purpose. I want to believe that my illness is a door opened instead of a door closed. Instead of being demoralized I want to be empowered and I want to share that with you too.

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Chronic Bed Head

Once upon a time, when I was little, I used to love holidays where I could stay in my pj’s all day. Those times were rare, because unless you were sick, my parents thought you should always wake up, make your bed and get dressed. So when I was sick, or perhaps on holiday for school and could lounge in my pj’s all day long without speculative glances from my parents I loved it. Fast forward to 2018, when I am 43 and should be out working and being active and here I am living in pj’s or some variation of comfortable clothing that I can get away with exiting the house without looks. Not that I probably couldn’t go out in my pj’s; I have worked in retail and I could tell stories on what I have seen people shop in. My child-self, looking into the future would dance up and down positively glee-full seeing a future of “every day is pajama day,” while the adult me wonders what the hell happened. There are adults out there who are envious too, even if I explain the reason why I stay home and the reason why I stay in pj’s all day and I know it’s because their inner child is starry-eyed at the fantasy of trotting around in pj’s from sun-up to sun-down. But the reality is not as exciting. In fact, I’d trade my pj life for going out to work if it meant I would no longer have chronic pain.

So now you might be wondering, if you don’t have chronic pain/illness, what is it like to stay in bed, stay in pjs (or some pj variant) all day long? Let’s start with this: I don’t eat bon-bons all day, I don’t watch soaps or chat with my friends on the phone (because 99% of them work) and it’s not a lazing about in luxurious comfort all day long either. In fact, let’s start with that.

• Staying in bed, in my pj’s all day is probably the farthest thing from comfortable. So much so that I joke about it regularly casting myself in the role of the Princess and the Pea, because I can never get quite comfortable anywhere, regardless of where. The bed, the couch, the chair..nothing is ever perfect, because my pain does not come from an old mattress or saggy chair, it’s me. So all I can do is try to make myself as comfortable as I can and even so, I have to get up and move every 20-30 minutes and go through the entire process of attempting to get comfortable all over again. It’s frustrating and maddening at times.

• For any that think someone with chronic pain socializes all day long from bed is very misinformed. I do keep in contact with people via Skype and various other social media, but it is in no way a replacement for actual human contact. The majority of people I do chat with are also chronic pain patients and are very lonely. Chronic pain is itself, very isolating and very lonely.

• It is a preparation for war when I am in bed, fighting through crippling pain. There’s the heated blanket (which hands down is the best investment I have ever made), there’s my five pillows that I prop and stack however I can to get comfortable and it changes every 30 minutes or so, my computer so I can write and work on ideas for future articles and my blog and there’s probably an ice pack on any given day to try and launch a two-front assault on the pain, my diffuser with essential oils that make me happy, the lamps on the night table are used instead of the overhead light because too bright can give me a migraine, my cat Neptune nearby, the two dogs probably on the bed with me and honestly, if I could fit some stuffed animals on the bed I would. When in war you need all the ammo you can get your hands on.

• When I deem that it is a stay-in-bed kind of day (or week) , I do all my work and writing from my bed making myself as comfortable as I can. I am grateful that I have something to keep me occupied and that makes me feel useful. There are those of us out there who aren’t physically able to tackle anything, even if they want to. I think it is unfair to target them as lazy when none of us asked for any of this.

If there is any departing message I could leave with those who do not understand what it is like to hurt so badly that you can only tolerate extremely soft, lightweight pj’s or leggings and soft, loose, t-shirts, or how it is to hurt so badly that staying in bed is the only way to get any relief, even if it is for 30 minutes at a time, is that we come to our bedroom, our sanctuary, because we have to. I think if there was something that helped our various symptoms, that made us feel well enough to leave our bedroom, we would hop on it and take it because not only would we be able to venture out of our bed but we’d have our life back. That is something we all want.

Deciphering Chronic Pain Code: I’m Fine

I am as guilty of saying these two little words as any of us. It has become somewhat of a running joke in my house, as to what FINE actually means. If you ever watched the Italian Job, you know what I mean. Also, it seems to be a universal knowledge of what a woman actually means when she utters those two little words and it is never good. But here are a few of my reasons for why I might say I’m fine, and maybe you can relate too.

• You ask how I am: but I don’t want to upset or weigh you down, because the reality is, I feel as bad as any other day.
• Attempting normal: It’s not as easy as it seems to “look” normal when most days I feel like I’m falling apart. In fact, I have seriously considered writing all the reasons why I think I deserve an Oscar for Best Performance but all my chronic friends deserve one. Maybe it’s possible for us to share? Display it on the mantle for a week and pass it on. All joking aside, normalcy is vital when your life is very far from normal.
• Fear of disappointing: Whether it’s kids, spouse, friends or work- sometimes it’s all I can do to just push through the pain even when I know I need to rest and even when I know it might take a week to recover if I just push through. It’s as disappointing to me as it is everyone else when I can’t continue any given task or what should be something fun with family or friends.
• That dirty little word- selfish: As much as I shouldn’t feel like this, the act of extra self-care for myself when I need it makes me feel incredibly selfish. Sometimes it’s just easier saying I’m fine, adding an excuse of why I can’t do whatever it might be and then going off and doing what I need to, to take care of me. It really is kind of funny, in a not so ha-ha way, how chronic illness makes you feel like you have some sort of problem that you need to hide it from people. I kinda want to have meetings now. Coffee and donuts. I mean I don’t need an excuse for donuts ever, but it does make it easier.
• Broken Record Syndrome: If you think it’s annoying to constantly hear I am not well, how do you think I feel? Seriously. Sometimes saying “I’m fine” is as much for my sanity as it is yours.

I also think it might be helpful to understand inside of the mind of someone with chronic pain, or perhaps it is more, how someone with chronic pain deals with the non-chronic folks around them. For instance:
• I’m having a good pain day: Good pain day is an inherently funny, strange statement. Oxymoron, if you will. But they do happen. It’s a day where you feel you can accomplish everything you want to, but have to remember to cut it in half or you’ll wipe yourself out for a week. No joke.
• Door Slam aka I don’t want to talk about it: I don’t want to explain how crappy I feel, because not even I want to deal with it. I don’t want fake sympathy, I don’t want sugary sweet, bless your hearts, because people don’t know what to say. Another reason I say “I’m fine.” I don’t need sympathy because I throw enough pity parties for myself.
• Happy Shiny Face: I feel horrible, but if I let that horrible escape from some un-monitored crack in my armor, I’m done. So I lie, lie, lie, lie and lie to myself and everyone around me in order to get through the day. Besides, no one can help me, so how does it help anyone to share what is really going on?
• Coping mechanism: Sometimes it’s easier to just smile and not talk about the pain. You put on your handy-dandy little mask of “Everything’s right in the world,” and you press on. You tailor everything you do that day to fit the mask so you can blend in. You play that little mental game over and over until you just can’t anymore. Until you don’t even believe it anymore.

Sometimes I really feel like I am part cyborg. Not just because I have a prosthetic hip and pins and rods in my back but because chronic pain has made me feel as though I am no longer human, that I have to translate how chronic pain makes me feel and what goes through my mind, to others.

After-Holiday-Crash

Happy Yule! Merry Christmas! Peaceful Solstice! Happy Hanukah! However you celebrate, wherever you may be celebrating, I hope it was joyful for you and I wish you peace and health in the coming New Year.

It is the day after Christmas festivities in our house. Christmas Eve is traditionally spent with my mom and dad at their house and any guests they might have. Christmas Day is just us and usually means a lot of cooking, but I can cook in pajamas and not have to worry how I look and can enlist the kids to help. It was a great holiday for us. The food came out great and on time, and without so much as one glitch. Yay for me! I had received my gift early, a silver-tipped Siamese cat whose name is Neptune and who is already fitting in with the family very well. My previous cat died a year ago in October and I really thought I was not going to get another cat for a long time. It’s still very hard knowing she is not here and I miss her terribly, but Neptune is a joyful addition. He’s about 4 months old, was rescued as a wee lil babe in San Antonio just before Harvey, as part of their feral cat rescue. He was abandoned by his momma and fostered by a wonderful and caring woman, who I am very grateful for. Neptune has really found a place in my heart.

I don’t know about all of you, but for me, there is always an after-holiday-crash. Between the excitement of gift buying and preparations made for meals and the kids being home from school, I’m always incredibly busy. Even as someone who struggles with chronic illness and has had to adapt and modify how much I do, I always find myself busy and then crashing hard after Christmas. Still, there is that mad dash toward the end of the year hot on the heels of Christmas, but it’s never with as much enthusiasm. New Years is nice enough and we always plan an evening of fun with the kids that usually ends up with watching movies and eating a variety of finger foods. The following day is generally clean up day and maybe some napping as we head into the new year.

This year’s crash feels harder than usual. I find myself feeling badly because my mom did Christmas Eve and I could see she was exhausted. She’s 70 years old and I should be the one doing everything for the holidays, but that kind of preparation from start to finish would leave me unable to function for a week. But my mom is from Cuba and Christmas Eve entails some traditions that I’m just not sure I could continue without serious commitment from all my children and my husband. As I write this, I am actually wondering if perhaps changing some of the typical Cuban fanfare for Christmas Eve would make it more do-able or perhaps changing the entire menu and doing something different might give my mom a break and inspire the kids to be more participatory and maybe, start their own traditions. Whether or not it is in a few years or a few months, eventually one or more of them will probably have a family or want to host the holidays at their place or maybe they want to bring their own dish to the table. Maybe it is time to be more flexible.

Today has been a mix of cleaning and resting. Since my recent surgeries and effort to recover, I have not been able to clean the way I might. Of course, the way I might typically exhausts me regularly and I certainly don’t need surgery recovery as an excuse. My kids have done their best to clean and keep up with everything, but I am cursed with OCD and so it’s been building up for some time now, though I have been able to squash it down because I wasn’t able to physically do it hobbling about with a walker. But now, with my cane, I feel like I have to try and so I have been really tired. I have been tackling one room as I can, sometimes not getting through the entire thing in one day. Today was my bathroom and vacuuming my bedroom. With new kitty, it has to be cleaned regularly or we both start sneezing. I think I have gotten done as much as I can get done today. As though the after-holiday-crash weren’t enough, it’s been gloomy and raining and cold all day and it doesn’t look like it’s about to change at all. This does little to inspire me to do much else but laze about, so I am pretty pleased that I have at least cleaned some, added to my blog and will do one more chore before I pick up a book and do something I haven’t done in recent months- read!

One last thing before I go. New Years is often about new beginnings. I don’t put much stock in resolutions because I think it sets you up for failure. I think it is a combination of setting an intention and doing little things every day to change your lifestyle, that helps you to change. So at midnight, on New Year’s Eve, set your intention for the year. Then every day hence, make one small change to your lifestyle that supports your intention.

To all my readers and your families: A blessed holiday to you and peaceful and healthy New Year.

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.

A Brief Respite

Where to begin?

While this is a blog about chronic illness and chronic pain I feel I should take a break every now and then to decompress from it all. I figure it’s only fair that I take my own advice, and one of my tips for living with chronic illness and pain is to avoid falling down that rabbit hole where you can become all-consumed with whatever is ailing you. And, while knowledge is power, for the person dealing with the chronic illness, it can be very overwhelming at times. That being said, the other reason for my brief respite is the state of the world right now that I also find very overwhelming.

I do not think I have ventured into politics in my blog, but perhaps have given you enough insight as reader to construe where I fall on the political spectrum. I don’t want to alienate any of my readers if they differ in opinions, however, I can promise that I will never be judgmental. I really do believe that people have the right to their opinions and as long as there is no personal attack its fine. So, if any do want to comment on any of my thoughts, please keep it civil.

I am quite horrified at what I see happening in our government. It has been difficult to watch, every day, every hour, hell, every minute because it seems like it is completely out of control. My husband will be the first to tell you that I am far too empathetic and I couldn’t disagree with that analysis. I have really tried to care less, to feel less, but it is very hard. I have learned that sometimes I have to disconnect from social media and news alerts and so on, because before I know it I’m very overwhelmed and caught between being angry and crying. And as all you spoonies know, those really powerful, draining, emotions take a toll on the whole person. But in recent months I am finding it harder and harder to deal with a United States that I do not recognize. I find it harder and harder to accept that the man sitting in that White House is, in fact, our President.

A little back ground on me that I don’t believe I have shared before: I once had a different blog on race. I have been trying to finish my Anthropology degree for almost 20yrs. In those 20yrs, the focus of my study has been race and disease. I am pretty obsessed with both my philosophy on race is that it doesn’t exist. That it is a man made construct that was supposed to help in the classification of man, the way they did with other species of animals, and which failed miserably because we are not breeds of animals. I feel very strongly that continuing to hang on to these archaic ideas of race that only succeeded in dividing humanity, will destroy us. So when I see what is happening in the White House, and how the leader of our country is continually seeking to pit one group against the other, whether Democrat and Republican or Black and White, it angers and upsets me. The world would be a much better place without this hate.

Maybe if it were only that, only this rampant desire for division, I might be able to compartmentalize and just continue my daily routine. But from our natural resources to our children’s health care, this current administration seems intent on toppling the efforts of every man/women before them, including Republican Presidents and it horrifies me. I believe in science, I believe that if we do not make an effort to take care of our planet that the planet will die. I also believe there should be a universal health care system in place because health is not a luxury and when you have a healthier population you eventually will have less taxing costs on health care. I also feel that education is not a luxury either. Children everywhere should have access to good, quality education. They have an amazing education system in Finland- who insists that they did not come up with it, but used the United States as its model for their education and there is no such thing as private education in Finland. All the children there receive excellent educations, whether their parents are wealthy and elite or work more humble jobs and are of modest means. They are not divided either, meaning that the children of the Prime Minister of Finland could go to school with the children of a local store owner. No one is made to feel left out and no receives subpar education because of their income status. Finland ranks number one in terms of education and how their students perform in college afterwards.

I wish it ended there with our administration, but it doesn’t. Caught up in the whole health care and insurance chaos is the fight over opioids and what I am not afraid to call the hysteria, surrounding it. It isn’t lightly I choose that word, hysteria, either. I know that many have died from opioid misuse and over-dose but I also firmly believe that the statistics used to support this idea of an opioid crisis have been damaged by including fentanyl and heroine over-dose, which the CDC has not denied and which spokes officials have said that they did not want to “dilute the message” of the dangers of opioid use. Now, as someone who uses opioids to get through a day and now worries on a very regular basis that it might be taken away, I’d like to say that I know the risks and dangers of opioids, but I also know my life without them. I could barely function without them and my doctors tried every conceivable way to make me comfortable so I could work and engage in my life. It didn’t work. These drugs have given me a semblance of my life back. My life will never be as it was. I am never at a zero-pain level and even with them I hover between 4-7 any given day. I have also read the stories of many, many lives that ended far too early, by their own hand because they were denied their medication. These are lives lost because no one wants to hear the cries of people living in day-to-day pain, because these doctors don’t know what to do and worse yet, they take these drugs away from people in incomprehensible pain with little more directive than “Accept your pain.” I will not deny that opioids are not the best thing for me or anyone, but until someone figures out an alternative medicine that will not cause the same side effects, I think I have the right to live the best, pain-free life possible.

As always, these are my opinions. I appreciate every one of you who takes the time to read and I hope that I have, in some way, helped you. I will be back soon, and back on topic. The hubby and I are planning on some much needed time together.

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.