Melissa Wardlaw

@melissa-wardlaw2 | contributor
Melissa Wardlaw was diagnosed with CRPS type 2 resulting from a spinal cord injury (non-paralyzing) suffered during routine epidural steroid injections. She was subsequently diagnosed with fibromyalgia, sinus tachycardia and additional chronic medical issues. She also has lumbar and cervical degenerative disc disease/arthritis, sciatica and migraines. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, Melissa is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and “paying it forward” by offering peer counseling/advocacy to those dealing with similar medical struggles. She is also a Contributing Writer and Guest Blogger for digital publications. As a fierce advocate, Melissa runs an in-person and online support/empowerment group for CRPS/RSD, chronic illnesses & pain in the Metro Atlanta area. She volunteers and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain and invisible disabilities. Melissa encourages fellow patients and caregivers to reach out to her for peer support at crpsatl@gmail.com.

Misleading Information and Complex Regional Pain Syndrome (CRPS)

So I will admit my opinions might be somewhat controversial. But please reserve judgment until you’ve read the whole story — deal? As a complex regional pain syndrome (CRPS)/reflex sympathetic dystrophy syndrome (RSD) patient (among multiple other chronic illnesses and pain), I am quite tired of seeing images of extremities swollen up so intensely to look like a balloon, or gangrene on a foot or hand, toenails or fingernails fallen off or various other extreme and unsettling pictures represented as CRPS! I’m also tired of reading articles about complex regional pain syndrome patients who are happy they have had a limb (or multiple limbs) amputated. One article I read recently of a double amputee CRPS (very young) patient even called herself an amputee advocate?!” A CRPS amputee advocate?! Don’t get me wrong — if her pain is improved, I’m happy for her; but promoting amputation as a successful treatment for CRPS (or any) chronic pain is a dangerous message to send to fellow patients. I admit, many of us (myself included), have wanted to tear off our limbs or get them amputated more times than we can count because of the continuous and tortuous pain of CRPS, but advocating for amputation? I’m sorry but I just can’t get behind this as a sole “treatment” for CRPS. The fact is, amputation for complex regional pain syndrome pain is a very rare, highly controversial treatment of last resort and you will be hard pressed to find a doctor in the U.S. (or anywhere really) who will agree to amputate a limb (or multiple limbs) based on just CRPS-related pain. This is because pain relief is very rare from amputations, and amputations can even cause phantom limb pain, more medical issues, infections and greater disability. Many times wearing prosthetics isn’t even an option either. Here’s the honest truth as I know it: When complex regional pain syndrome is diagnosed, nine times out of 1- there is an inciting event or trauma — i.e., a broken bone, surgery or medical procedure gone wrong, slip or fall, nerve injury, car crash or any number of injuries or illnesses that may cause it. So these underlying injuries and inciting events are co-morbid conditions along with CRPS. In addition, CRPS can also cause additional medical conditions and diagnoses. These non -CRPS conditions can cause many other symptoms and issues, including lymphedema (extreme swelling of an arm or leg caused by a lymphatic system blockage), gangrene, cellulitis, sepsis and a whole host of problems that will cause the horrendous pictures we see and articles we read on the internet that are being represented as only CRPS. Now, I’m not saying CRPS isn’t present as well in these cases and I’m not saying CRPS doesn’t make one’s extremities swell or turn various colors, or that one’s skin doesn’t crack or have rashes, etc. (in fact I know all too well these symptoms are a part of CRPS), so please don’t misunderstand what I’m saying. What I am saying is that CRPS on its own is very rarely the single sole cause of many of these extremely shocking pictures and/or need for amputation. Because I offer peer support/coaching, particularly for those newly diagnosed with complex regional pain syndrome, I am asked all the time about images and articles from Google that portray CRPS in this extremely negative light. I hear the unwarranted fear and anxiety from patients and their caregivers who have seen and read this “CRPS-related propaganda.” So I have to educate them on the symptoms of CRPS and sometimes send examples of realistic pictures of CRPS-affected limbs. I also have to explain that just because your foot or hand (etc.) doesn’t look like these alarming pictures, it doesn’t mean you don’t have CRPS. CRPS, aka, “the suicide disease,” is the most severe form of chronic pain there is according to the McGill Pain Scale. It is bad enough without having to make it look and sound worse than it is, thereby causing new patients unnecessary stress that hinders their ability to have hope and healing. Counteracting “Dr. Google” and the media is becoming very frustrating and more difficult. Complex regional pain syndrome is very poorly understood as it is, and when this kind of questionable reporting is put out into the world, it sets back the understanding of CRPS and rare diseases even further. I urge those who are posting pictures like this or writing articles where amputation is warranted to explain all the facts of their underlying injuries, illnesses or co-morbid diagnoses and medical conditions in addition to their CRPS. It will give the entire community a lot more hope and reality of living with complex regional pain syndrome when inadvertently comparing our own journeys. To help newly diagnosed patients (as well as patients who have had CRPS or chronic pain for a long time even) find more accurate CRPS/RSD resources, I direct them to a guest blog I wrote for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) with links, articles and websites they might find useful in painting a more realistic picture of CRPS (p lease note some of the links are invalid as it was written a while ago). As CRPS and rare disease patients, Dr. Google can be a godsend for us, but we need to be careful and use critical thinking with what we read (and share), and be able to decipher between the accurate and inaccurate items when it pertains to our chronic medical issues. Each and every one of us has a duty to be a voice for ensuring the integrity and accuracy of our diagnosis is upheld — not only for fellow patients and healthcare professionals, but also for the chronic illness/pain community as a whole. Finally, it goes without saying, but never substitute Google (or peer groups) for the medical advice of your personal trusted physician(s), and please don’t be afraid to get second and even third opinions! You may or may not agree with me, but I do appreciate you letting me express my opinions. Please tell me how you feel in the comments below. Thanks my fellow Warriors!

5 Intangible and 5 Tangible Gifts for a Loved One With Chronic Illness

Wondering what to get for your friend or relative who lives with chronic illnesses or pain this holiday season? Sometimes we are tough to buy for, but I have a few suggestions for tangible and intangible gift ideas! 5 Intangible Gift Ideas 1) Invite your relative or friend with a chronic illness to your holiday parties or events — or even out to lunch or dinner! Even if we can’t come, it is nice to be asked. 2) Check on your loved one with a phone call/text or possibly come over to visit. Many people with chronic illnesses have to be alone or stay home for the holidays due to symptoms/pain, so it is nice to hear someone is thinking of us or wants to make the effort to see us. 3) Ask us what small accommodations in your home will make us more comfortable. If you are hosting a holiday meal or party, it is extra nice and thoughtful if you ask your chronically ill loved one if there’s anything that will make us more apt to be able to join! This can be something small, such as a pillow or maybe a fan, or even just knowing what food is being served so we can eat beforehand if we are allergic. Little things can make a difference between successfully managing our symptoms/pain, especially at a holiday gathering — or having a rough time with it. 4) Ask if we need a ride. Many times it is difficult (or impossible) for someone with a health condition to drive or drive long distances or even at night. Offering to pick us up or share an Uber can be the difference between us being able to attend a holiday gathering or not! 5) Ask us about our chronic illnesses and our lives. Holidays are some of the most isolating times for us, and showing an interest in our lives helps us feel like you care. 5 Tangible Gift Ideas 1) Buy us a small medical or “modality” gift that will help with chronic illness symptoms. Gift ideas include a heating pad, lidocaine patches, or weighted blanket. If you don’t know what we need, an Amazon gift certificate will always suffice! 2) Make/bring us a home-cooked (or takeout) meal! For many of us, cooking is an exhausting or even overwhelming task. A home-cooked meal is heaven to us, and shows that you really care! 3) Give us “service” gift cards. It helps tremendously for us to be able to outsource various services whether they are “health” needs or wants. This enables us to spend our limited energy on doing things we enjoy! Some good options include: a. Door Dash or Uber Eatsb. Cleaning or organizationc. Massage therapy, yoga/Pilates, or acupunctured. Nail/spa/hair salone. Freshly or Hello Fresh food prep/deliveryf. Virtual Mental Health/Nutrition Counseling 4) Streaming service subscription (such as Netflix, YouTube Premium, or Hulu). One of the best ways to distract ourselves from chronic illness symptoms/pain is to escape into a good movie or series binge! There are also many options for genre-specific streaming channels we would not otherwise purchase for ourselves. 5) Gaming device/apps. It can help us tremendously to lose ourselves in an online game or app. Music or meditation is another way we can distract ourselves from symptoms/pain, so iTunes or Google Play is a great gift! Happy Holidays my fellow chronic illness and pain warriors!

5 Intangible and 5 Tangible Gifts for a Loved One With Chronic Illness

Wondering what to get for your friend or relative who lives with chronic illnesses or pain this holiday season? Sometimes we are tough to buy for, but I have a few suggestions for tangible and intangible gift ideas! 5 Intangible Gift Ideas 1) Invite your relative or friend with a chronic illness to your holiday parties or events — or even out to lunch or dinner! Even if we can’t come, it is nice to be asked. 2) Check on your loved one with a phone call/text or possibly come over to visit. Many people with chronic illnesses have to be alone or stay home for the holidays due to symptoms/pain, so it is nice to hear someone is thinking of us or wants to make the effort to see us. 3) Ask us what small accommodations in your home will make us more comfortable. If you are hosting a holiday meal or party, it is extra nice and thoughtful if you ask your chronically ill loved one if there’s anything that will make us more apt to be able to join! This can be something small, such as a pillow or maybe a fan, or even just knowing what food is being served so we can eat beforehand if we are allergic. Little things can make a difference between successfully managing our symptoms/pain, especially at a holiday gathering — or having a rough time with it. 4) Ask if we need a ride. Many times it is difficult (or impossible) for someone with a health condition to drive or drive long distances or even at night. Offering to pick us up or share an Uber can be the difference between us being able to attend a holiday gathering or not! 5) Ask us about our chronic illnesses and our lives. Holidays are some of the most isolating times for us, and showing an interest in our lives helps us feel like you care. 5 Tangible Gift Ideas 1) Buy us a small medical or “modality” gift that will help with chronic illness symptoms. Gift ideas include a heating pad, lidocaine patches, or weighted blanket. If you don’t know what we need, an Amazon gift certificate will always suffice! 2) Make/bring us a home-cooked (or takeout) meal! For many of us, cooking is an exhausting or even overwhelming task. A home-cooked meal is heaven to us, and shows that you really care! 3) Give us “service” gift cards. It helps tremendously for us to be able to outsource various services whether they are “health” needs or wants. This enables us to spend our limited energy on doing things we enjoy! Some good options include: a. Door Dash or Uber Eatsb. Cleaning or organizationc. Massage therapy, yoga/Pilates, or acupunctured. Nail/spa/hair salone. Freshly or Hello Fresh food prep/deliveryf. Virtual Mental Health/Nutrition Counseling 4) Streaming service subscription (such as Netflix, YouTube Premium, or Hulu). One of the best ways to distract ourselves from chronic illness symptoms/pain is to escape into a good movie or series binge! There are also many options for genre-specific streaming channels we would not otherwise purchase for ourselves. 5) Gaming device/apps. It can help us tremendously to lose ourselves in an online game or app. Music or meditation is another way we can distract ourselves from symptoms/pain, so iTunes or Google Play is a great gift! Happy Holidays my fellow chronic illness and pain warriors!

Advocating for Chronic Pain Patients During the Opioid Epidemic

All of us who experience chronic pain are seeing firsthand what is happening with the “opioid epidemic” and specifically, from the fallout of the 2016 CDC Prescribing Guidelines. The abhorrent scrutiny chronic pain patients and healthcare providers are enduring, forced tapering off opioids and most alarming, patient suicides. But what can one person do about it? Actually, a lot! It’s easier than you think to become a patient advocate and I’m here to walk you through my meeting with a U.S. Representative’s team. After reading about patient advocate Cindy Steinburg testifying for Congress, my own mother was motivated to write her Congresswoman (I had no prior knowledge of her doing this by the way). Her letter was brief but very passionate. First, she complimented the Congresswoman on her efforts; second, she briefly told her the (continuing) saga of my long and horrific journey through chronic illness and pain. Finally, she concluded by asking for the Congresswoman to keep chronic pain patients and “the other side” in mind when it comes to issues involving the “opioid epidemic.” Her letter was thoughtful and engaging, and laid out the facts in a respectful and concise way. She was very complimentary and never used an angry tone or “blamed” the government for hurting pain patients. She merely brought the issue to the Congresswoman’s attention. To our shock and delight, an assistant to the Congresswoman in D.C. responded and asked if my mom and I would like to meet in order to discuss the issues further! A meeting was then scheduled with the district director and team of the Congresswoman. While I am an advocate for myself and others with chronic illnesses and pain, I have not been too vocal with issues concerning the opioid epidemic. In my role as a peer support counselor and advocate, I speak to patients on a consistent basis who, for one reason or another, have had issues with being prescribed opioids for their pain. But neither my mom nor I were very familiar with the specifics of the opioid epidemic and fallout from the CDC Guidelines. So the race was on to gather statistics and issues affecting chronic pain patients. We went to work gathering research and working on an informational “takeaway” document to handout in our meeting. The Meeting As we walked into the Congresswoman’s office, we were nervous! Of course I had to bring various modalities for my comfort as we pain patients often do. We got inside and immediately saw the seal for the U.S. House of Representatives! It was very exciting and surreal. Our meeting went very well. We had a main takeaway document for them which we also used as a guideline for our discussion. We also gave them a few handouts that corresponded to certain items mentioned in the document. ( Please see the main takeaway document and links to the handouts below). Our meeting lasted over an hour and they were very receptive. They admitted they knew nothing of the issue from the “other side” and were very interested to know more. All they hear about in the media is overdose deaths and how opioids are horrible and addicting. It never ceases to amaze me how grossly uneducated people are in this country (and in particular the government) when it comes to this issue, and it’s up to us to change that! If we don’t do it, who will? The meeting was very conversational; we kept it professional, told them my (and my mom as my caregiver) story of chronic illness and pain and simply educated them on the facts without getting angry or emotional. Interestingly enough, one of the team members experiences debilitating migraines where she even has to miss work on occasion! She also isn’t allowed opioids for her chronic pain and said nothing helps — so like millions of others, she basically has to grin and bear it, effectively making her part of the huge burden cost of pain on society (which is almost 700 billion dollars annually). The mere fact that she experiences chronic pain allowed us to develop a rapport. At least she understands and has a personal stake in the plight of chronic pain patients. I told her about some of the therapies I use for my migraines and even referred her to my doctor! You never know how many people in the government have chronic pain themselves or have a friend or family member with chronic pain. Considering there are approximately 50-100 million of us who struggle with some form of chronic pain in America, and 20 percent of those deal with intractable or high-impact pain, it is inevitable that our representatives in Congress will know someone who struggles. The bottom line is that we are 50-100 million potential voters — so they should be interested in and listen to what we have to say, right?! To my amazement, they mentioned that the Congresswoman might want to attend one of the support/empowerment group meetings I run to gain additional insight from patients! She’s the one who brought it up! Of course I was elated and told her we would love to have her and her team attend. The meeting concluded with the team thanking us for coming in to speak with them and for the invaluable education. Of course we thanked them as well and told them we would be sending an electronic copy of the handouts as well as additional resources on the topic. We felt good and proud about what we had accomplished. We have now educated an elected official (and her team) who has the power to make real lasting changes in this country — and so can you! ADVOCACY RESOURCES Find your legislative contacts Takeaway Document given to the team: “Discussion — Issues Affecting Chronic Pain Patients” (PDF – April 22nd, 2019) Links to handouts mentioned in document: HP3 Letter (March 6th, 2019) HP3 Press Release and CDC Response Letter (April 10th, 2019) U.S. Pain Foundation Position Statement: “Balancing Pain Management and Opioid Reform” “Pain Management Best Practices” Inter-agency Task Force Report Additional Resources YouTube video from LasVegas NOW – KLAS-TV8: “Our Pain. The Other Side of Opioids” Article from The New York Times: “Good News:  Opioid Prescribing Fell. The Bad?  Pain Patients Suffer, Doctors Say.” (March 6th, 2019) Article from The Washington Post: “The Problems with One-Size-Fits-All Laws on Opioid Prescriptions” (April 4th, 2019) Article from Reason magazine: “America’s War on Pain Pills is Killing Addicts and Leaving Patients in Agony” (April 2019)

The Meaning of 'Tired' When You Live With Chronic Pain

Everyone gets tired on occasion, right? You know, where you may be dragging a little more than normal. Maybe you didn’t sleep well the night before. This is to be expected. Well, for those of us who live with chronic, intractable pain, being a “little tired” on occasion would actually be welcomed, dare I say amazing. Unfortunately, what we experience instead is sheer exhaustion and disabling fatigue on a 24/7 basis. Because chronic intractable pain is constant, difficult to manage, incurable and usually severe, our bodies are constantly fighting it, day in and day out. This affects every part and piece of us — many layers of our hormones, including our metabolic and endocrine systems, adrenal glands and others are affected, which causes many other systems and organs in our bodies to break down. The result is a progression that we have to fight back against every day. This fight leaves us with little to no energy, which causes immeasurable and unexplainable fatigue. So how does this “everyday fight” against our bodies manifest? What does this extreme fatigue look like, feel like, act like? It means that we have to literally force ourselves to get out of bed and leave the house — every. single. time. It means that we have a mental block — a “brain fog” that makes it difficult to concentrate. We forget words and sometimes can’t even speak coherently. It means that no matter how much sleep we get (spoiler alert — it’s usually not much due to the pain), it’s never restful or restorative sleep. We could sleep 24hrs/day and still be tired. It means that simple tasks leave us winded and short of breath. It means that walking a little more than a few steps makes us breathe a little harder or makes our heart race. Stairs? Yeah, good luck. It means that we have to be aware of our surroundings at all times to prepare for a simple outing. The temperature, noise level, light, activity, driving distance, seating arrangements, food/drink, modalities, etc. are all things we need to concern ourselves with so accommodations can be made in order to not overwhelm our bodies with even more pain and fatigue. It means that every time we attempt to shower — to wash our hair, shave our legs, (etc.), we have to prepare beforehand because it takes so much energy that we don’t have in the first place. And we have to recuperate afterwards like we have run a marathon. And the days we decide to actually go the extra mile to fix our hair and maybe do our makeup? Yeah, it’s an Olympic event. That’s why it rarely to never happens. But when we do, we feel better about ourselves, which is good for our psyche — and we need that help. It means that every extremity and body part — hands, arms, feet, legs, head, eyes, etc. — feel as though they have bricks attached that are weighing us down and simply not allowing us to move. It means we need to sit, or lie down or veg out and do nothing, not even look at the phone. Our “spoons” are in the negative! And if we say we need to sit or lie down — or leave/discontinue an activity — that means now! It means our pain and symptoms have sucked the life out of us. Simple tasks such as talking on the phone, using our arms/hands to search the internet, texting, making a sandwich, brushing our teeth, etc. can cause our pain/symptoms to flare and take more energy healthy people take for granted everyday. It means our extremities and entire body are heavy and weak after barely any activity. Small activity such as walking across a crowded parking lot in the heat can make us feel like passing out. It means that we are completely spent — we have reached the limit and absolutely cannot do anything else. The fatigue is debilitating. When we are “tired,” it means something much different than the tired you (“normal,” healthy society) are used to hearing or saying yourselves. I mentioned in another story that a friend of mine with a rare cancer actually told me she finally understood what fatigue is. She is at the point where she doesn’t want to even get out of bed most days. I told her I understood. I have to force myself to get out of bed and leave my house every time I want to do something. Why? Because I am always tired. It never goes away. But guess what? I do force myself because I have no choice if I want to live and not let the pain win. What does being “tired” mean to you?

Chronic Illness Stole My Dream of Having a Baby

I have always wanted to be a mother for as long as I can remember. It was always in my plans. Unfortunately, thanks to a routine medical procedure gone wrong, my dream of having a baby and becoming a mother the traditional way disappeared in a split second. You see, this medical error (that occurred right before I was 30), caused a spinal cord injury that in turn caused a rare and debilitating diagnosis called complex regional pain syndrome (CRPS), followed by many other chronic illnesses and subsequent medical issues, which made bearing a child impossible. A little more about my journey: I was married to my (ex) husband in the initial years following my injury. We should have been preparing to have children, had a life-changing medical trauma not intervened. But I was clearly neither physically able nor prepared at that time to have a baby, and I certainly wasn’t emotionally able either. My only goal was to get well, so having a baby at all wasn’t on the agenda at that critical time. My focus throughout my 30s shifted from being a successful businesswoman and starting a family to trying to fix this painful “beast” torturing my body and mind 24/7. Yes, I know now it was an unreasonable strategy to try and fix incurable illnesses as opposed to  managing them, but alas that’s what I did. Fast forward — I ended up getting divorced from my husband (not because of my medical issues, but that’s a story for another day). I was down a life partner and in no shape to even be the type of mother I wanted to be given my homebound/bedbound, inability to drive state. I could barely care for myself, let alone care for a child. I was watching my motherhood dream slip away and there was nothing I could do about it. After approximately seven to eight years of homebound/bedbound status and approximately 10 years of being unable to drive, I finally found some better treatments and coping mechanisms in order to start living some semblance of “normalcy” again. I was managing better than I had been, but I was definitely not well. But I started dating more seriously again and decided I would take foster classes as my dream of motherhood was still alive. I was very open to adoption. All the while, I knew in order to have the best chance at adoption I would need a willing partner. But I realized it was more difficult trying to find a partner who wanted children. Plus, the odds of adopting a baby were very low and you didn’t have much control, especially if you went through the foster care system. Further, what are the chances a birth mother would choose a “disabled single (or even attached) mother” for their baby? My options felt very limited. I decided the best option for me would be to freeze my eggs when I was 40 years old. Yes, I realize it was a very irrational decision, considering my advanced age as well as all of my chronic illnesses and medical issues (including hormonal issues and PCOS, which affects fertility). It was essentially leaving me with a slim to none chance the eggs I froze would ever amount to a miracle baby. Plus, knowing I would not even be able to carry the baby according to my doctors, I would also need a gestational carrier (surrogate) to even carry out my plan. But I had to try. I can’t explain the psychological desire and pull, but I simply had to do it. So after approximately $20k spent out of pocket and huge increases in my pain/symptoms later (by having to go off HRT and through the IVF treatments by myself), I had only frozen about three or four viable eggs. Not a lot at all. Needless to say, it was more than disappointing. Then on top of the physical trauma and financial investment I made to go through the IVF process, I also had to pay additional fees for “egg storage” each year ($550/year). So each year would go by and I would ask myself why I did this when I wasn’t even looking for a partner. I was content being alone for the time being. Sure I had a few serious boyfriends, including one I almost married and who even wanted to start a family, but he just wasn’t right for me. I wasn’t about to settle just for the sake of attempting to make a baby. I recently had to make the decision with the egg storage fee yet again. I spoke with my friend and got her advice. She asked me if I cared whether the child was biologically mine or not and I said definitely not. That made me think — why was I worried about keeping my DNA (eggs) if that wasn’t important to me? Besides the obvious slim to none chance this miracle baby would ever happen in the first place, this made a lot of sense. So I made the tough decision to donate my eggs (my potential babies) to science. In a way I felt as though I was giving up on my dream of having a baby. And I suppose I have. But I haven’t given up on my dream of being a mother — yet. Recently I have begun looking into potentially adopting an older child if at all possible. A teenager would be too old as my desire and longing is to raise a child, but I think maybe a 6 to 10-year-old would be in the realm of possibility. I believe at this point in my medical journey I could nurture and care for an older child on my own (with help of course). We will see what the future holds. So a split second medical mistake that led to a spinal cord injury and chronic illnesses have stolen my dream of having a baby; this is a fact. I may get to the point where I have to accept that my dream of being a mother in a non-traditional way won’t come true either. In fact, I’m almost at the point of acceptance. But if and when I do, I will know I have done everything in my control to explore all my options and see if it’s possible. So many of us with chronic illnesses and medical traumas lose our ability to be in control of our own destiny and dreams. I know it has for me. It steals a lot from us and simply put, it’s not fair. But what helps me is to control the things I still can control. And those things are actually a lot. It helps me to research and analyze decisions so I can explore every avenue, and if I get to the end of that exploration and find out my goals and dreams cannot be met because of my medical situation, it sucks — it makes me angry and it hurts, so I must grieve the loss. But at least I know that it’s not for a lack of trying and it’s not my fault. More important, none of this is my fault. But in the end, I have to be realistic and accept these losses to gain closure in order to stop living in the past to move on, be grateful for my present and excited for my future! Am I alone in this motherhood journey? What are some dreams chronic illness has stolen from you or what are some dreams you’ve achieved despite chronic illness?

A Letter to Chronic Illness Patients With COVID-19 Vaccine Anxiety

As a chronic illness and pain patient, it is frightening to be in a position where you’re unsure about whether or not you should get the vaccine. On one hand, the world is experiencing this devastating virus called COVID-19 that is killing millions of people around the world and leaving others with chronic symptoms months after. A recent study found that 34% of COVID-19 survivors received a diagnosis for a neurological or psychological condition within six months of their infection, according to the study published  in the journal Lancet Psychiatry. And it is worse for those of us with chronic illnesses and complex medical conditions who are immune-compromised because many of our doctors have informed us we will likely be hospitalized or die if we get it. On the other hand, we have this vaccine available that is supposed to protect us (or at least be another safety barrier) from the virus that arrived in record time, but hasn’t been specifically tested on our population. Sure, we have seen the statistics that show most everyone who is susceptible to allergies and sensitivities should be fine unless you are allergic to one of the active ingredients in the vaccine . Oh, and they monitor you for 15-30 minutes after, right? That should be enough… Well, I’m here to tell you that it’s OK if that does little to curb your fears. Why? Well, for one, most of us who live with chronic illnesses and pain have heard time and time again one thing or another to ease our minds from healthcare providers that has turned out differently. We have also been through horror stories ourselves with side effects and rare side effects on top of experiencing paradoxical (opposite) effects of medications. And if we haven’t been through anything like this ourselves, we know many in our chronic illness communities who have gone through these things. We are also aware of the plethora of mistakes that are made in the medical community — many of us have experienced these patient errors, which are the third leading cause of death in the United States (yes, look it up ), although now with COVID that might have moved down on the list. So, in our anxiety -ridden minds, anything can happen and we don’t want to be guinea pigs anymore! On top of all this, given what happened to the chronic illness and pain community with the controversial rollout of the CDC guidelines in 2016 and ongoing issues (if you know, then you know) that are still greatly impacting patients and compassionate physicians, it’s no shock that many of us have a hard time trusting any CDC guidelines at this point. And I think our skepticism is justified. So given all of this background, what are we supposed to do? What is the right decision for us? Do we get the vaccine or not? Well, I can only speak and act for myself. I will admit I was leery about getting the vaccine. My mom pleaded with me to get it. I told her I just wanted to wait a little bit to see how others in the community fared with it. But a funny thing happened. I started doing more research. And I asked questions. And I started to learn the facts and statistics of the vaccine. I spoke to my doctors (and listened to other specialists with my chronic illnesses) who all recommended I/we get it. I saw the information in my own support group (and others) of those who had gotten it, and had minor side effects, and even one woman who said her pain/symptoms got better after the vaccine! So after taking all of this research and information into consideration, the deciding factor for me came down to one key question — did I want to risk getting COVID-19 and all the potential issues and even death or did I want to risk getting side effects or even a rare side effect from the vaccine? To me, the answer became clear in that moment. To be frank, it was essentially making a decision of the lesser of two evils. I would get the vaccine! I decided to get the vaccine as soon as it was available to me (actually before with a doctor’s note of medical necessity). With the first shot (I got Pfizer), I had a very sore arm for a day or so, and a minor symptom of shortness of breath very temporarily as well as a low-grade fever (which might have actually been from something else since I get these symptoms on occasion anyways) but that was it! Easy peasy! After the second shot, I had the very sore arm again and was a little more fatigued than normal (which again, could have just been from overdoing an activity). But, about three to four days after my second shot, a funny thing happened — similar to the other woman in my group, I felt better! My overall pain/symptoms have been feeling better than they normally do ever since (my second shot was April 9) and I’ve been sleeping much better than I normally do as well (I have very bad painsomnia ). Most important, I feel much safer when I go to the grocery store or am around family and friends. Despite still needing to take all precautions — again, the vaccine is just another layer of protection after all — my “ COVID anxiety ” is reduced significantly and I feel like I can slowly dip my toe out into society again. It’s a wonderful feeling! All of the people I have spoken to with chronic illnesses feel the exact same way. The bottom line is that everyone has to make the decision about getting the vaccine for themselves. It is your body and therefore your decision. And you should never make any decision like this lightly, nor let anyone make you feel badly for your decision either way. But we also have to be mindful that getting the vaccine is not just about us. Just like taking precautions and protecting ourselves from COVID-19 is not just about us. Rather, it’s about helping our communities, society and world as a whole. The sooner a greater portion of the population is more protected, the sooner the spread of COVID-19 will lessen so we can all get back to a more normal way of life again. So whatever decision you make, I see you and I support you. And whatever you do, please continue to stay safe out there, my fellow chronic illness and pain warriors!

When My Friend With Cancer Empathized With My Chronic Illness Pain

I’m not sure about you, but none of my “healthy” friends understand what I truly go through living with invisible chronic illnesses and pain. Obviously, they are aware I have some medical issues. They see me at casual dinners for a couple hours here and there, and we talk on the phone or text during the week. During our interactions, however, (like the good chronic illness patient I am), I put on my social warrior mask and fake being well for their comfort. In short, there’s no amount of explanation that will ever enable them to understand the symptoms and pain that we, as invisibly chronically ill patients, contend with on a 24/7 basis. So, you can imagine my surprise when my dear friend — who was recently diagnosed with rare and aggressive bile duct cancer  — told me she finally understood more of what I was dealing with, specifically in reference to my symptoms of fatigue. In that moment, I felt validated, gobsmacked and incredibly saddened all at once. It wasn’t a good feeling to know she had to experience symptoms I experience to understand my plight better. Rather, I just felt sad and angry she has to go through them at all. At this point, my friend has just completed her 12th week of chemotherapy. Keep in mind, she is only in the initial stages of her battle. Already, she has had devastating bouts of fatigue and sleep deprivation to the point of exhaustion, dizziness, nausea and hair loss. Like many of us with multiple chronic illnesses and pain, these are also symptoms I struggle with on a constant basis, most prominently, bone-crushing fatigue and “painsomnia.” Of course, because I have educated her about some of my symptoms in the past, she was aware at least intellectually of what I go through, and has always been extremely supportive. But it wasn’t until she went through some of them herself, that she told me she could truly empathize and understand just how difficult life is for me. She told me she doesn’t know how I deal with these symptoms 24/7 for as long as I’ve been dealing with them, as she is struggling experiencing them for 12 weeks (and counting). She also told me how much she respected me for coping so well. She also wanted any advice I had for making the symptoms better. In that moment, I was glad I could do something to help. Now granted, I have been dealing with chronic illnesses and pain for many years, so I have learned better ways of managing my symptoms and pain. Since she is brand new to these symptoms, coupled with a potentially life-threatening cancer , it’s safe to say we’re not comparing apples to apples here. But, I thought it was important to write this article for a couple of reasons and pass on some words of wisdom: 1. It is impossible for our healthy friends to understand what we go through. In times past, I would get frustrated trying to explain my symptoms and pain (and the invisibility of them ) to people who have never experienced these issues. Having learned that is usually a fruitless endeavor, I don’t worry about it too much anymore. 2. I’m grateful for friends and family who are sensitive to my health issues in spite of never having gone through anything like them. Conversely, I am blessed when I realize who is not sensitive to my health needs whether they’ve gone through anything similar or not. Living with chronic illnesses and pain can help us realize who our truly supportive friends really are — and are not. 3. When you have a precious friend who is going through so much, yet still takes the time to acknowledge your struggle, that’s a friend worth having. 4. Throughout my decade-plus of living with chronic illnesses and pain, I have come to realize everyone is going through something. Additionally, everyone processes pain and loss differently. Support may not always be shown in the way you want it to be. 5. Just because I am struggling with my own difficulties doesn’t mean I cannot be a supportive friend to someone else and help them through their pain and struggle. It may be that my own pain has enabled me to be the supportive friend they need. 6. Each of us is more alike in our pain (whatever that may be) than we are different. Use those commonalities to develop true empathy and compassion instead of judgment and skepticism for others. 7. Don’t judge a book by its cover. Until you’ve walked in someone else’s shoes, you don’t know what they’re truly going through (quote my friend’s father used to always tell her). This article is dedicated to my friend. You know who you are. To your continued fight, health and healing — I love you and I’m here for you every step of the way!

When My Friend With Cancer Empathized With My Chronic Illness Pain

I’m not sure about you, but none of my “healthy” friends understand what I truly go through living with invisible chronic illnesses and pain. Obviously, they are aware I have some medical issues. They see me at casual dinners for a couple hours here and there, and we talk on the phone or text during the week. During our interactions, however, (like the good chronic illness patient I am), I put on my social warrior mask and fake being well for their comfort. In short, there’s no amount of explanation that will ever enable them to understand the symptoms and pain that we, as invisibly chronically ill patients, contend with on a 24/7 basis. So, you can imagine my surprise when my dear friend — who was recently diagnosed with rare and aggressive bile duct cancer  — told me she finally understood more of what I was dealing with, specifically in reference to my symptoms of fatigue. In that moment, I felt validated, gobsmacked and incredibly saddened all at once. It wasn’t a good feeling to know she had to experience symptoms I experience to understand my plight better. Rather, I just felt sad and angry she has to go through them at all. At this point, my friend has just completed her 12th week of chemotherapy. Keep in mind, she is only in the initial stages of her battle. Already, she has had devastating bouts of fatigue and sleep deprivation to the point of exhaustion, dizziness, nausea and hair loss. Like many of us with multiple chronic illnesses and pain, these are also symptoms I struggle with on a constant basis, most prominently, bone-crushing fatigue and “painsomnia.” Of course, because I have educated her about some of my symptoms in the past, she was aware at least intellectually of what I go through, and has always been extremely supportive. But it wasn’t until she went through some of them herself, that she told me she could truly empathize and understand just how difficult life is for me. She told me she doesn’t know how I deal with these symptoms 24/7 for as long as I’ve been dealing with them, as she is struggling experiencing them for 12 weeks (and counting). She also told me how much she respected me for coping so well. She also wanted any advice I had for making the symptoms better. In that moment, I was glad I could do something to help. Now granted, I have been dealing with chronic illnesses and pain for many years, so I have learned better ways of managing my symptoms and pain. Since she is brand new to these symptoms, coupled with a potentially life-threatening cancer , it’s safe to say we’re not comparing apples to apples here. But, I thought it was important to write this article for a couple of reasons and pass on some words of wisdom: 1. It is impossible for our healthy friends to understand what we go through. In times past, I would get frustrated trying to explain my symptoms and pain (and the invisibility of them ) to people who have never experienced these issues. Having learned that is usually a fruitless endeavor, I don’t worry about it too much anymore. 2. I’m grateful for friends and family who are sensitive to my health issues in spite of never having gone through anything like them. Conversely, I am blessed when I realize who is not sensitive to my health needs whether they’ve gone through anything similar or not. Living with chronic illnesses and pain can help us realize who our truly supportive friends really are — and are not. 3. When you have a precious friend who is going through so much, yet still takes the time to acknowledge your struggle, that’s a friend worth having. 4. Throughout my decade-plus of living with chronic illnesses and pain, I have come to realize everyone is going through something. Additionally, everyone processes pain and loss differently. Support may not always be shown in the way you want it to be. 5. Just because I am struggling with my own difficulties doesn’t mean I cannot be a supportive friend to someone else and help them through their pain and struggle. It may be that my own pain has enabled me to be the supportive friend they need. 6. Each of us is more alike in our pain (whatever that may be) than we are different. Use those commonalities to develop true empathy and compassion instead of judgment and skepticism for others. 7. Don’t judge a book by its cover. Until you’ve walked in someone else’s shoes, you don’t know what they’re truly going through (quote my friend’s father used to always tell her). This article is dedicated to my friend. You know who you are. To your continued fight, health and healing — I love you and I’m here for you every step of the way!

Why People With Chronic Illness and Pain Fake Being OK

As someone who has been living with multiple invisible chronic illnesses and pain for many years, I know how we are constantly scrutinized and evaluated — both out loud and silently — for our medical issues that may not be visible to the naked eye. This judgment relates to how we look, the way we act, activities in which we partake, how we sound and the list goes on. It happens primarily when we are in social settings or around others who are “healthy” and have no understanding or awareness of  invisible chronic illnesses and pain. And when is a more prevalent time this occurs? None other than the holiday season of course! What I have to tell you may surprise you — most invisible chronic illness  and pain patients do fake part of our illnesses. How, you ask? No, we do not fake being sick. Quite the opposite actually. We actually fake being well. We fake it to make it. We fake being “healthy” enough to go out to lunch or dinner with friends for an hour or two. We put on our social masks and fake smiles through our struggling to make others feel more comfortable with our existence. We fake being OK when around others and try not to discuss our medical issues so people don’t give us that “poor thing” look or pity us. We hide our modalities and accommodations when out (and in pictures) so our illnesses are not “visible.” When you ask us how we are feeling, we give you the typical answers you want to hear, such as, “I’m fine” or “I’m good” or quickly change the subject. So why do we go through all of this hassle of faking it? Well it’s simple — we want to fit in! We want to be invited to go places, to have friends and we want our families to love us. We are desperate to be a part of the world and feel some semblance of normalcy, if even for a brief respite. We want to distract ourselves from the constant misery of sickness and isolation we live in 24/7, as it is good for our psyches. We want to laugh so we don’t cry. And frankly, for those of us with invisible illnesses, it’s just easier to fake being well than trying to educate people who will never understand. Please know we are still us even though we are living with invisible illnesses. We don’t want our medical issues to define us and would love it if people accepted us knowing the reality of our lives, and we didn’t have to fake being OK just to fit in. Want to know a secret about this holiday season? Many of us with chronic illnesses and pain aren’t too sad about COVID ruining our plans. While we do enjoy “faking” it sometimes, it does get exhausting. And the holiday season is particularly stressful and taxing for us with even more social events, parties and dinners to try and attend. So having an excuse to stay home during all the hustle and bustle (which is where we have to be most of the time anyways), isn’t such a bad holiday plan after all. Have a wonderful holiday season, my fellow chronic illness  and pain warriors and caregivers.