Several weeks ago, I was chatting with a fellow Fibro Warrior of mine and somehow we got onto the topic of whether fibromyalgia was progressive. My thoughts, from some research and my own experience with the disorder, was that NO; it was not a progressive disorder. My friend, who has lived with the disorder over 20 years against my almost five years, politely disagreed stating that she felt her observations led her to believe that YES, fibromyalgia IS a progressive disorder. In this article, http://fedupwithfatigue.com/is-fibromyalgia-progressive, many doctors weigh in and share their opinions on observations and research. I will explain after I summarize the article why I believe fibromyalgia is not a progressive disorder. First, it’s important to address the definition of progression. According to Dr. Ginevra Liptan of the Frieda Center in Portland, Oregon: “what physicians mean by ‘progressive’ illness is one which function is lost over time...multiple sclerosis, an illness characterized by progressive nerve damage and loss of muscle function.” According to most doctors interviewed in the article, the disorder of fibromyalgia itself is not progressive. However, there are symptoms that if are not treated correctly (i.e. under a doctor’s care is one example), can become progressive because they aren’t being addressed. Many compare the situation to exercise. If a doctor recommends exercise or physical therapy for a broken leg, physical therapy helps the muscles that had not been used for weeks or months to keep from atrophying. An example connected to fibromyalgia is the struggle to have restorative sleep. If you cannot address and find a way to address this issue, your pain and fatigue is likely to increase. Doctors Randall Gates and Martin Rutherford, who run the Power Health Rehab and Wellness Center in Reno, Nevada state that “...the graduate decline seen with fibromyalgia is due to the chronic, autoimmune and or degenerative nature of the underlying causes associated with the condition.” Two of the doctors disagree with the majority consensus stating that there IS progressive degeneration from Fibromyalgia. Dr. Neil Nathan from the Redwood Valley Clinic in Redwood Valley, California, and Dr. Richard Podell of the Podell Medical Practice in Somerset, New Jersey both agree for some people, fibromyalgia can be degenerative. While they are in the minority, they backup their comments. However, in a similar fashion to the doctors who don’t believe it is progressive, these doctors state it is likely the co-existing conditions that often come along with fibromyalgia that make it appear progressive. The example they both use is Chronic Lyme disease which CAN do irreversible damage to your body. The interesting thing is those that are stating that fibromyalgia is progressive are still stating it’s due to their co-morbid diagnoses and therefore, in my opinion, make their argument weak. In going back to the discussion with my friend, she does have many coexisting diagnoses and agreed they could be making her fibromyalgia worse, however, she still believes her fibromyalgia has gotten worse over time. I guess I’ve been lucky and have found the combinations of medications, therapies, and supplements that make me think fibromyalgia itself is not a progressive disorder. However, since my diagnosis, I have received a couple of co morbid (common) diagnoses that do often make it feel as though maybe my fibromyalgia has gotten worse; yet, I need to remember and remind myself that my coexisting diagnoses, while having overlapping symptoms with fibromyalgia, are an entity of their own and it is possible that the symptoms of THOSE disorders and diseases are worsening, and it is separate from the fibromyalgia. How do I justify this? When I started to get new symptoms after my fibromyalgia diagnosis, I just attributed it to the fibromyalgia. However, after connecting to an incredible naturopath and primary care doctor (who also has fibromyalgia), as well as taking the coaching course, I have learned a new symptom need not mean fibromyalgia. I’ve learned to talk to my medical support team and that’s been helpful. So, after reading my not so short synopsis, you can see why I’ve come to my conclusions. However, I am sure there are other patients and doctors who think otherwise. I’d love your input, your thoughts and feelings about the issue. Do you think fibromyalgia is progressive? Why or why not? If you do, how do you rationalize your decision?
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http://nationalpainreport.com/the-opioid-debacle-8832812.html
The title of this blog is also the title of an article of the same name written by Suzanne Stewart, a fellow chronic pain patient, a Patient Health Advocate and an Ambassador for the U.S. Pain Foundation. In the article, Suzanne discussed the ramifications of the CDC’s somewhat recent decision to wage a “war” on addicts by forcing doctors to limit the amount of opioids prescribed. By doing this, they hope to see a major decrease in addicts. Suzanne addressed the fact that not only does this affect addicts, but those of us who are chronic pain patients who rely on opioids to help manage our pain. She states that the CDC isn't differentiating between those addicted to “street drugs” and those (like us, chronic pain patients) who use the meds to help manage our pain. This topic and decision by the CDC has caused such decisiveness between the two “parties,” (those that believe opioids can cause addiction and those who feel that while the addiction crisis needs to be addressed) putting the pressure on doctors that prescribe opioids for chronic pain disorders is unfair to them and their patients. I, if you haven't figured out, I side with the latter group. As an obvious chronic pain patient myself, I went through the gamut of options to help reduce my pain, especially during my flares, only to learn that an opioid was my only option to even try to touch my pain sometimes. Even as a Fibro Warrior who has friends who depend on these medications every day, I swore up and down that I would never request an opioid because of the stigma attached to it. But, when I realized that all the options for pain management failed me, I had to change my view. I also had the support of my doctor and a Fibro friends. Suzanne addresses and answers many questions and issues posed by the CDC’s decision. She makes valid points which I believe can change some peoples’ opinions on the usage and effects of opioids on chronic pain patients. I encourage you to read this article, and to share it, as it has a lot to offer for people on both sides of the argument. How do you feel about the usage of opioids as a treatment for chronic pain patients? Did you, like me, change your mind when you realized that taking opioids does not automatically make you an addict? I'd love to hear your opinions on the topic overall as well as your opinions on the article. My goal is to educated those of us with chronic pain disorders on the topics that are important to us. My goal is to share relevant articles,my opinions and get our community talking so that we can be more active in our treatment. I hope to post at least once a week on different topics, and have many articles saved to share. If there are any topics you'd like to see, please let me know. Until next time... The title says it all, doesn't it? Seems to be so easy, right? What if I told you it was, or it can be? Would you believe me?
In an article in the National Pain Report (http://nationalpainreport.com/my-pain-is-not-me-8832971.html), Suzanne Stewart discusses what she does to live a full life while living with chronic pain disorders. And, she writes about how she is often questioned by those who don't live with these disorders. They often cannot comprehend that we can function (just differently) because if we can live a full life, are we really in pain? I'm sure many of you question the same thing, whether you live with a chronic pain disorder or not. As someone that lives with chronic pain (obviously, or I wouldn't be writing this blog), I can tell you it IS possible. Stewart provides a couple of examples including: going out for dinner, gentle exercise, and quality time with friends and family. She states that she tries to do something "social" every day to keep some normality in her life. These are all excellent examples of things YOU can do as well. Will there be days where you are hurting too much, or are too foggy to participate? Absolutely. And, you need to forgive yourself and accept it. I can help you with this! Of course life with a chronic illness changes your life, but it doesn't have to cause you to live an isolated and lonely one. You may not have friends that understand why you need to cancel at the last minute, but as long as they are supportive, they are keepers. Unfortunately, we all have had experiences where relationships go badly due to our illness. Again, this is not your fault. In my opinion, these people that aren't willing to learn or accept you as the "new you," aren't worth your time and energy (But, that's a whole separate thing I could write a book about!). I have learned this the "hard" way. Are you interested in finding a balance between how you functioned pre-fibro and how you function with the diagnosis? Would you like some assistance in ways that you can feel like you are a productive member of society? Feel free to drop me a line and we can talk about it, because I have some GREAT ideas for you. As I say in my email signature: I'm using the disease that at one time knocked me down, to help support others learn to live their life to the fullest! If you're ready, I'm here to help. Just reach out. =) The holiday of Passover is holy and is one of the Jewish holidays that most non-Jews know about. Some say that the portrait of the Last Supper was of Jesus at a Passover seder. It is the holiday that recounts the biblical story of Exodus where the Jewish slaves overthrew the Egyptian Pharaoh. Moses led the Jews on a journey through the desert that took 40 years. The struggle to survive in the desert raises many complex religious and emotional themes, ranging from our relationship with God, to the concept of freedom, and the ways that we enslave ourselves.
Enslave can be a key word for those of us with Fibromyalgia or other chronic illnesses because once we have the diagnosis, many of us succumb to what “will be” (i.e. what is encompassed in the diagnosis) as opposed to learning more about the disorder and ways to make life livable and free despite the diagnosis. As someone who is newly diagnosed OR someone who has lived a while with Fibromyalgia, you know that the symptoms of the disorder can definitely make you feel like you are homebound and therefore “enslaved” to it. It’s my belief that everyone with Fibromyalgia can experience the freedom that Moses and the Jews did after escaping the evil Egyptian Pharaoh. It’s a mind over matter issue as well as a decision to make the choices to want to live a life you love. There is a famous quote: “Pain is inevitable. Suffering is optional” (Haruki Murakami). I bet you are wondering how you can live a life in pain and not suffer. It’s certainly possible. This is how I envision to live my life everyday. Do I have pain? Absolutely. Do I suffer from the pain? Sure, sometimes. But, I don’t let it consume, or enslave me. I have found a program that works for me that includes medications, supplements, exercise, my medical team and of course, my coaching. What does coaching have to do with this? I was just watching a Facebook Live video of MY coach and while she and the speaker (Dr. Ginevra Liptan) were talking about the benefits of coaching and a light bulb went off in my head! I realized that by coaching others, I had to keep accountability of myself because I didn’t want to be one of those people who doesn’t practice what they preach. As I now write this, I realize much of my feelings of freedom come from becoming a coach. For a long time, I felt enslaved to Fibromyalgia because I didn’t think there was any job that I could do with my disorder. Everything I was qualified for demanded a lot of physical activity that, if I chose that job, would keep me in a flare full time. The great thing about coaching is I do it on my time and in the comfort of my own home (sometimes from my pajamas - shhhh! Don’t share that with anyone!) I could be in a flare myself and still coach one of my clients because I was able to set up a workspace that is best for me. According to Ilana Tatarsky, the author of the article entitled Hard but Good, “ Life brings pain. All kinds of pain. But we have the freedom to choose our response to that pain. I can smile through it, laugh around it, and see the beauty in spite of it. I choose my focus.” This is how I’ve chosen to live my life and I can help you reach this as well; but, you have to be open to acknowledging your own enslavement and willing to fight for that freedom. It’s not a simple task or an easy road, but it is doable. Are you interested in finding YOUR freedom? Let’s find a time to talk about what we can do to help you unshackle yourself from your Fibromyalgia. If you’re interested in a free session, click on the “Work with Me” button above and let’s get started! =)
How many times did it take you to find a doctor to get your Fibromyalgia diagnosis and breathe that sigh of relief? Now that you've gotten that diagnosis, are you happy with how your doctor is treating you? Do you feel like you are being listened to? Have you done your research and feel like your doctor is pushing away ideas that you'd like to try, such as supplements, eastern medicine methods, etc? Well, you're not alone. I was right there with you, as were many.
http://nationalpainreport.com/if-the-appt-isnt-going-your-way-be-on-your-way-8832783.html It took my walking away from two primary care doctors and three rheumatologists to realize that a rheumatologist was NOT what I needed. Obviously, each case is different; however, did you know that rheumatologists are often no more knowledgeable about Fibromyalgia than internists are? And, oftentimes, your own PCP is an internist. If you do your research, you can find out the best doctor for you. For some of you, though, doing research is difficult. But, here are some key points quoted directly from the article, that if you experiencing similar things with the doctor that treats your Fibromyalgia or other co-morbid diagnoses, that maybe it's time to run as far from them and find someone else that is better suited for you. " Are your medical conditions/illnesses very complicated? Do you have more than the average person’s share of visits to medical specialists? If you are anything like me, with a variety of high pain illnesses, then the answer to these questions is a definite “YES”. Most of us who are 'complicated cases' have had experiences that most healthy people wouldn’t be able to fathom. It feels as though I’ve been treated with less respect, since I’ve become a chronic pain patient." "If you go to a Dr. and:
So, what can you do? Do you feel stuck? This is where myself, as a Fibromyalgia Advisor, can step in and help you. I have been trained to search and connect with others all over the country (and, if needed, the world) to find a doctor that would be best suited for your needs. So, don't settle because you've found the doctor that FINALLY diagnosed you, thinking that you've found THE ONE. Find the doctor that's willing to grow with you, that is willing to think out of the box, that is maybe even willing to say, "You know what? I can't help you with this, but I think I know someone who can." There IS a doctor out there for you. Would you like me to help you find him or her? Comment below or send me a message and let's get started with a consultation today. I can't wait to help you! Here is another chicken or the egg question. This blog post is one that I found which highlights that many, if not most, people struggling with Fibromyalgia or other chronic pain disorders, struggle with their mental health. The question is whether the chronic pain causes a mental health disorder like depression or anxiety, or whether these disorders were already present prior to your Fibromyalgia diagnosis. My opinion? The answer could be both. While unfortunately mental health is still considered an stigma that people are embarrassed to admit to, 18.2% of the U.S. adult population is diagnosed with a mental health disorder. That is 1 in 5 people. However, if you weren't diagnosed with something like depression prior to Fibromyalgia, it is completely understandable why you would be AFTER the diagnosis as your life does a complete 180, and in your eyes, not in a positive way. http://nationalpainreport.com/mental-health-illness-and-chronic-pain-8832670. So what does the blogger say about this? "It can seem that the world is stacked against you. General depression is strongly associated with those who suffer from intractable pain since the experience of pain can make someone feel helpless and uncertain about the future. There are also high rates of bipolar disorder and anxiety disorders amongst pain patients, especially those suffering from migraines, fibromyalgia and arthritis." So, this isn't actually just a feeling of hopelessness, but an actual connection; and, yet the blogger goes on to talk about how depression and pain share biological pathways. Biological pathways? What does that mean? Biological pathways are chemical reactions within a cell. So when you are depressed or in pain, cells are sending similar signals (depression vs. pain) to your brain often making it difficult for doctors who are not knowledgeable about Fibromyalgia to diagnose it. In my case, when I was trying to get diagnosed initially, my primary care doctor hastily dismissed Fibromyalgia and blamed it on depression. On average, it is still taking a couple of years to get diagnosed with Fibromyalgia. That in itself can cause feelings of hopelessness, depression, anxiety and the like. But, don't give up. If you feel like the symptoms fit, keep on fighting. Find a new primary care doctor, look for a new internist, rheumatologist, neurologist, or even a naturopath. In speaking with my clients, many of them have found that seeking out doctors that think out of the box or practice more eastern medicine practices are more likely to recognize your Fibromyalgia. This is also a great place to reach out to Fibromyalgia Advisor or Coach like myself. I can safely say that most of my clients have been diagnosed with some sort of mental health disorder alongside their Fibromyalgia and other co-existing conditions. I have been able to help them stabilize their mood along with finding ways to manage their pain as well as whatever other goals they have wanted to meet in order to live the best life they can while living with Fibromyalgia. If this blog has touched even a small part of you, reach out to me by sending me a message through this website. I would love to hear from you, and consultations are always free. Please feel free to sign up for my mailing list as well. Until then, I'll be looking for more information to help support you to learn how to live your life to the fullest! Everyone loves the fall holidays, right? The scents of the meat juices simmering, the baked goods wafting into the neighbor's yard as they cool on the open windowsill, and the changes of colors from bright summer to autumnal settings at the table. Then, you have the excited anticipation of guests; maybe, you are having family members over that you haven't seen in months! And all the preparation, whew! That's enough to make the “normal” person tired. A person who is living without chronic pain and fatigue would be wiped just thinking about all that needs to be prepared for the holidays. And then you add the “Jewish” in, and you have synagogue attendance, prayer, walking to and from synagogue, as well as to family and friends' houses; and, things just seems to mount up and feel increasingly overwhelming don't they? Ok, let's step back for a minute and start from the beginning, shall we?
Let me introduce you to MY guide to the Jewish (fall) holidays of Rosh Hashana, Yom Kippur, and Sukkot. For those of you who aren't Jewish, I still think there are ways you can identify with this post, but the holidays are hyperlinked for short explanations. Initially, when I was going to write this, I was going to divide it up by holiday but then realized it was completely unnecessary. Also, I need to insert a little caveat: what is appropriate and acceptable for me by law, may not be for you. I highly recommend that you go to your trusted Rabbinic authority on what accomodations can be made for your conditions. For me, it's my LOR (local Orthodox Rabbi); however, I recognize that not all of my Jewish readers are Orthodox. So, you go to the source that you feel best represents you, and can answer your questions about how to observe the holidays to your best ability while still accommodating your needs due to your Fibro and/or other conditions. THE BASICS I'll tell you the basics of what I do, and what has been recommended to me by MY Rabbi and then you can go to yours, and figure out what works best for you within the confines of Jewish law. And, if you aren't observant, then you can just enjoy this little piece written by an Orthodox Jewish woman who once stressed out about figuring out how to observe the Jewish holidays, how to enjoy the Jewish holidays, while living life with chronic illness and chronic pain. ROSH HASHANA I've learned that I NEED my sleep in order to have the energy to go to shul (synagogue) and/or friends/family's houses for meals. I've also learned that I cannot go out for all the meals, and I cannot walk further than 5 blocks to someone's house for a meal, or I will be paying for that in pain for close to a week. Unfortunately, I've also learned I can either go to shul OR a meal. So, often times I daven (pray) at home and will ask someone (on Rosh Hashana [Jewish New Year]) to blow the shofar for me. The demands of standing and sitting in an uncomfortable chair in shul, and then walking somewhere for a meal, where I will again most likely sit in an uncomfortable chair, is too much for my body to handle. These are things that I learned the hard way. And, they still make me sad because I enjoy spending meals with family and friends and I enjoy the services; however, I know I cannot do both. So, if I do not go to shul, I will daven (pray) at home and I have accepted that is ok (and the Rabbi says it is too). YOM KIPPUR Yom Kippur (Day of Atonement) is a whole other ballpark. (Okay, so maybe I am dividing this up by holiday. This is what happens when you write a blog straight off the top of your head.) Most people know that you fast on this day. Fasting in Judaism means NO food, and NO water. There are obvious medical conditions like diabetes, certain points of pregnancy, and other conditions determined by your doctor and Rabbi that can exclude you from fasting. Having fibromyalgia and my other conditions do NOT exclude me from fasting completely; however, because some of my medicines require me to take them with food, I am allowed to take them with the minimal amount (which in my case is one ounce of food and one ounce of water). Again, this is something you need to talk to you Rabbi about. Even pre-fibro, I was a terrible faster. Regardless of the copious amounts of water I drink pre-fast, I get extremely dehydrated which makes me prone to light-headedness, fainting (on occasion), and bad headaches. So, any exersion on my body exacerbates these symptoms. Unfortunately, this means I spend minimal amounts of time at synagogue due to the intensity of prayer, and the uncomfortable sitting arrangment. I will, however, most times, make it to Yizkor (the memorial prayer for the dead), stay for maybe an hour more and finish my prayers resting at home. I used to have tremendous guilt over this, even in my pre-Fibro days. But the mitzvah (commandment) of Yom Kippur is to complete the fast, so if that means missing most of shul, for me, I had to accept it. And now, I do. But, everyone fasts differently, with or without a chronic illness. Again, you need to talk to your Rabbi about your symptoms, whether or not they are related to your chronic illness, and how to address them. The goal is NOT to land yourself in the hospital, or pass out. If you are a terrible faster like I am, please talk to your Rabbi about what to do if you get to a point where you are feeling really ill. There are things that can be done. As my friend says, “don't be a martyr.” Having all these accommodations put into place make an already difficult day, slightly less so, as you know you are fulfill the meaning of the day (even with your accommodations in place). SUKKOT Sukkot is a LONG holiday. 8 days long in fact. I often travel and stay with friends for the holiday which puts additional pressure on myself and my friends to figure if and how I will get to shul. And, when they are invited to their friends houses, am I able to make the walk? Two years ago, I learned a very big lesson. I went to stay with a friend in Miami and made my usual travel accommodations – wheelchair in the airport – but nothing more. Well, I learned that the shul they attended moved as they built a new building, further from my friend's house. I barely made that walk. A 20 minute walk. I never thought that a 20 minute stroll would be difficult, even on flat Miami sidewalks, but boy was I wrong. And then, there was a mile walk to a friend's house for lunch and then another mile walk back to my friend's house. As one of my grandmothers said, “I was done for.” I felt like a screaming-in-pain-pile-of-mush. I could barely make it to dinner, and when my friend came in to wake me the next morning, I could hardly move. I came to realize that I couldn't go to shul – it was too far away. And most of their friends lived pretty far too, so I spent most of my days at their house waiting for them to come home. Gratefully, the weather was fantastic, I caught up on a lot of sleep and reading, and got a LOT of Vitamin D. But, it was a definitely lonely. And, we know that if we choose it, fibromyalgia can become a very lonely condition. I was able to join them at dinners at my friend's parents' house just a couple of blocks away, but it was a startling and saddening realization for both myself and my friend. We both felt bad, and we both didn't know what to do, so we both said nothing. With Sukkot coming up again in just a couple of weeks, I am headed to Miami again. But, before asking my friend if I could come stay with her, I did some research. I didn't want to be left out, and I didn't want my friend to feel guilty leaving me at home. I learned there was a medical supply place where I could rent a wheelchair for the holiday, for those long walks to shul and to friend and families houses. Now came the big and scary question. Would my friend be up to pushing me? Before we answer that question, I had to make sure it was okay to come down to Miami. Well, obviously, you already know that answer. So, in talking to my friend who was excited to have my come visit, she said to me in a message, “The only disclaimer ... is that we would still plan to do whatever walking or eating out that is best for the kids/our schedule/our budget. you'd be included/invited to anything we did but anything that is too much for you, we'll make sure you have what you need at home and catch you later. Promise not to feel guilty if you choose not to join us for something and we promise not to feel guilty for leaving you behind?” How many of you would this upset? It didn't upset me at all. In fact, considering what happened unexpectedly last time, I thought it was completely fair. However, I was prepared for something like that. It was at that point that I brought up the wheelchair and asked my dear friend if she'd be willing to push me. She said YES! I'm grateful to G-d for some incredible friends, including this one. We may learn that depending on the comfort of the wheelchair, my level of fatigue, how much effort it takes her to push me, that there are some days that I still choose to stay home, but at least there are STILL some more options to get out, and there is NO GUILT. SUGGESTIONS Chronic illness causes a lot of guilt on both sides of the coin. For the person suffering, you feel guilty about all the things you used to be able to do and now cannot. Plus, you feel guilty for all the times that you cancel due to your illness. For the people that love someone who is suffering, they feel bad for the person suffering and don't know what to do to help. My amazing friend's immediate decision to agree lightened my heart. It also alleviated a level of stress that both of us were feeling but not communicating over the waves of the internet. STRESS is a key word here, and is something we deal with on a daily basis. To add holidays, Jewish law, travel, etc., only exacerbates that stress. But there are ways to anticipate and possibly avoid some of this. Prepare first, by connecting to your Rabbi well before the holidays are to begin, to determine as someone who lives with chronic illness, someone who has mobility issues, someone who takes required daily medications, what is expected of you. Don't be intimidated by it, because you'll often be surprisingly pleased by the exceptions that can be made so that you can observe the holiday to the fullest without compromising your health. In Judaism, your health comes before everything else. If you had any kind of Jewish education, the laws of holidays and the Sabbath are drilled into you from day one. But, you have to remember always that the most important thing is your health. If your health is being compromised in anyway during the holidays (G-d forbid), then you are required to break the laws of the holiday to focus on your health. You shouldn't just be consulting your doctor and Rabbi about the focus of your health on topics surrounding Jewish holidays, but on a daily basis. They both can provide ways, religious in nature or not, that can be beneficial to your growth and well being. And, this goes for all religions in my opinion. I realize that I wrote this specifically around the Jewish fall holidays; however, I want my non-Jewish fibro warriors to be able to connect to this, too. A Catholic friend that I was talking to recently about this blog told me of her fasting during Lent, and how her mother told her that due to her chronic illness she shouldn't be fasting on those holy days. She didn't know that. If your religion is a large part of who you are, do your research. I didn't know a lot of this either until a friend of mine (who, Thank G-d, does not suffer from chronic pain, but struggles with other issues when fasting) told me that I should be consulting my Rabbi about things like this. Your health always should come first. You should never minimize your health concerns. If you are on medication, there is a reason for it, and it should be taken regularly and the reason for it should be taken seriously. HOW CAN I HELP?? As a Fibromyalgia Advisor, I can only tell you how my Rabbi has guided me through the holidays. I can't advise you as to how to observe yours, I can only tell you to talk to your trusted Rabbinic authority to determine the best course of action for you. But, in terms of other non-medical related stuff, such as spending time with family and friends (which are important to many of us), I have a plethora of ideas. So, let's connect, let's discuss, and let's get started! The holidays really can be fun, especially if you have everything you need put in place before they start. There are obviously always hiccups but they won't be as bothersome when you know what is and isn't acceptable. Wishing those who celebrate a Shana Tova u'metukah. And a G'mar Chasimah Tova! This is a true story that happened to me a couple of years ago: I was in the kosher grocery store one day, picking up some food that I couldn't get at the regular grocery, and ran into a (now) acquaintance (another blog topic for another day) who asked me how I was doing and what I was doing “these days.” When people ask that question, I think about answering it in three ways: 1. The whole truth and nothing but the truth. 2. Partial truth: as in answering truthfully, but leaving some pieces out. OR 3. Blanket, generic: I'm okay, things are fine. With this person, I struggle each time with which answer to give, because I never know what her response is going to be on a given day. There are some people I can immediately decide on a given response. However, with this person specifically, there are personality issues going on, and I have to be prepared, sometimes even brace myself for her answer. I decided to be brave, and give the whole truth, and nothing but the truth. I told her that overall I was doing well, and that I was planning a trip to visit a friend for an upcoming Jewish holiday. This person knew I wasn't working and on disability, knew I had fibromyalgia, and knew I spent a significant amount of time at home due to my high levels of pain. (This was early on in my diagnosis, and my pain, despite being on medication, had not been able to be properly managed yet.) Here is how our conversation went: “It must be nice,” she said, raising her hands to the heavens and looking up. “I'm sorry?” I said. “It must be nice to have the freedom, money, and time to be able to pick up and travel whenever you'd like,” she responded. Despite being aware of my diagnosis and the fact that I was on disability, it became crystal clear that this woman knew nothing of how I lived my days. I had worked very hard to get to where I was, and where I am now, but I still needed to depend on disability because I was unable to work. I need to depend on medications for my physical and mental health. I have a lot of positive gifts in my life. I have a roof over my head, caring friends and family, and enough money to meet my basic needs. But, she didn't know how I lived my life, or where I got my money for that trip. She didn't know that I took out money from my disability check that just met my needs, to save for this trip. She just assumed. I don't get angry easily, but I felt the steam blowing out my ears. I took a few moments to collect myself, and responded, “Just as I don't judge you about how you make your life choices, I'd appreciate it if you wouldn't judge me. Living a life with chronic pain, an invisible illness no less, is no joke.” And, then I said the thing that I swore I would never say, the thing that those of us that live with the disorder often joke about. I said, “Walk in my shoes for 24 hours, and you will take back everything you said.” Reflections now: Do I regret what I said? No. Do I regret how I said it? Yes. I'm not an angry and bitter person. There are nicer and more appropriate ways to educate people about what it's like to live with fibromyalgia or any other chronic disorder and/or invisible illness. Fibromyalgia is still a new word, a new disorder, a new world. It's OUR job to educate those around us. However, we have to do it in a way that our friends, family, co-workers, bosses, and the WORLD want to listen and learn. Otherwise, we are going to get pushed by the wayside, and continue to be thought of by many as: an “exclusionary diagnosis.” Have you had a similar experience to this? How did you handle it? Was it something you regretted? If so, that's okay. Was it a moment that you'd like to revisit? Obviously not; but, maybe you'd like to process it with someone who “gets it.” Because, there is always the possibility of a next time. As as Fibromyalgia Advisor, I can help you with this. Not at the top of your list? It doesn't have to be. We must educate ourselves in order to educate others. If you ever encounter Mr/Ms. “It Must Be Nice,” let's make sure you have a kinder, possibly more powerful, and educated answer with which to provide them. I can update you on the latest research and findings on what helps us feel better, function better, and DO better in society. As a Fibromyalgia Advisor, I have many resources and people that I would love to share with you. Reach out to me and let's get started today! |
AuthorI’m Kate Straus and I’m a Certified Fibromyalgia Advisor. I help Jewish women feel confident in their ability to practice their faith while navigating the ups and downs of fibromyalgia. I’m using the disease that at one time knocked me down, to help support others live life to their fullest. Archives
January 2021
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