Trickiness of time

Someone recently asked me how long ago my medical issues started. With a blank stare and stuttered excuse, I realized that I couldn’t answer that question accurately. I began to wonder if I was lacking as a proactive patient.

Here’s the thing, I’m not sure that I want to have a perfect schedule and exact history of my diseases. I have approximations, ideas, sporadic notes, and well-intentioned guesses alongside crystal clear bad days and dramatic episodes. There are certainly dates and times logged in hospitals and doctor’s offices. I could spend my time, effort, and money collecting all my medical records. Let’s see, I would need to call, email, probably fax, send snail-mail, and visit miscellaneous providers across the world. Once all of that paperwork is compiled, I would have to go through each file and construct the chronological timeline. I would also have to check for mistakes (as they are frequently found in records) and make allowances for the many visits and doctors I cannot recall. There is also the important and impossible process of remembering when I experienced problems that I did not seek help for and knowing when certain symptoms started before the actual medical interventions.

It’s an exhausting and ridiculous process. I’ve tried my absolute hardest to compile a complete medical record. I have received a number of files and spent time writing a detailed history, to the best of my ability. But I know it’s a fruitless endeavor. There are incorrect memories and wrong dates peppering my history. Important moments slipped from my brain and insignificant ones have ballooned in their place. The thing is, this organizational shortcoming and not knowing exactitudes around my illness’s history isn’t rare or bad.

A combination of survival instincts and emotional coping mechanisms keep us from holding our pain too precisely. Reliving difficult physical experiences through a haze is preferable to clear loud memories of each traumatic event. I’m not even counting the brain fog! Time generally looses its meaning for the chronically ill. Or maybe I should say that the meaning of time changes. When your average day is filled with avoiding triggers and storing up enough energy to get through brushing your teeth, time looks more like day and night. Sometimes, that type of time doesn’t even register if you’re in a terrible flare or hospitalized. At that point, time becomes space: in my house or out of my house. There are many other versions of time depending on what is happening. It’s all very tricky and fluid. 

Unfortunately, the reality of our uncertainty can leave non-sufferers confused and even accusatory. They can’t fathom that our lives are complicated to a point of breaths being more important than days. I get it. When your reality doesn’t match up with someone else’s, a little short-circuiting happens and that person can choose to proceed with empathy or frustration. The latter is often what the invisibly ill hear. We hear it from the media, doctor’s office, social circles, and complete strangers. Of course, there are frauds, attention seekers, and even those with mental disorders who wear chronic diseases like coats to be discarded after the season has passed. But shouldn’t we err on the side of compassion? We, whether it’s someone on the other side of the world or a next-door neighbor, don’t know their struggle. Unless harm is occurring, we all need to be a little gentler with each other’s journey.

I have decided that I am not going to stress out about my timeline. Between being my own medical advocate and digging for the ‘why’ behind my conditions, making it through each day is hard enough. My diseases are mostly invisible and I will always have to defend the way that I am feeling. I can’t carry around my test results and doctor’s notes to prove to people that I am in pain. Nor should I! It started, it went, and it is still going… that’s all they generally need to know. I’m going to keep track of time when I need to or if it makes me feel better. I have to remember not to give myself the extra job of evidencing my medical problems to everyone. I’ll always handle my physical issues in a way that best suits me, not them.

Coming around

It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls under the same name-fail as Chronic Fatigue Syndrome. 

So, RLS is an actual condition and I have it. It started slowly and developed as a branch off of my Autonomic Small Fiber Neuropathy symptoms. I want to discuss what RLS truly feels like. The commercials and medical descriptions don’t do the weirdness and intensity of the disorder justice.  

At first, it was simply an uncomfortable pressure in my legs. I felt the urge to move them when I was falling asleep. It was manageable and I didn’t mind shuffling around a lot at night. The feeling gradually intensified and it went from uncomfortable to maddening. The urge to move was no longer soothed by kicking around my legs. The feeling had spread into my pelvis and walking was the only thing that calmed it. As the sensation grew stronger, it stopped feeling like an urge and began to mimic a deep ache. It could best be described as an internal itch that can’t be scratched. You know that frustrating feeling of having a deep inner ear itch or a piece of popcorn stuck in your teeth? That aggravation of a splinter in your finger or bug bite on your toe? It’s an incredibly pressing need for relief in a spot you absolutely cannot reach. It would often stop me from falling asleep and always aggravated my other physical issues. 

I have insomnia and, as you can imagine, RLS makes it way worse. I went to a sleep specialist and tried to explain what I was experiencing and how it differed from my average daily pain. The doctor immediately said that I was describing Restless Leg Syndrome. I was glad to hear that I wasn’t having some bizarre psychotic break, but another unfixable medical problem on my already long list left me feeling defeated.

The name sounded stupid and the only treatments were high-dose iron and SSRIs. I can’t take iron supplements and the class of drugs used for this condition don’t work for me. So, I geared up and did my usual due diligence. A dive through medical journals and the Internet took me on a roundabout journey. As it turns out, all the reliable resources said the same thing: upping iron intake, being lightly active, and orgasms. Uhhh, orgasms? As a treatment? As a doctor recommended treatment? 

Being desperate for relief, I was willing to try any unusual methods. I mean if scientific trial demands sacrifice, I’m up for the job. After giving it a go, I found out that… orgasms work! I know! Massive surprise! As it turns out, the dopamine and serotonin flood that comes along with, um, coming, acts as a scratch for that internal itch. Now, it isn’t a cure (wouldn’t it be cool if it was). There are many times where achieving that natural chemical cocktail is simply not possible or practical. Thankfully, my current autonomic neuropathy medications help calm the average misfiring nerves associated with RLS. However, when the medication isn’t effective or my legs are literally twitching and jumping from RLS, I have found that an orgasm is the absolute best temporary salve to quiet the madness.  

Like most disorders, RLS ramps up at night. In the beginning, I only experienced the feeling before falling asleep. Currently, it is at the point where I can get uncomfortable anytime my body is at rest. And yes, if I’m not at rest I’m in more pain from my other broken body issues. It’s one of the many double-edged sword aspects of having chronic disorders. However, finding out that I have the ability to soothe a major physical problem provides me with a bit of control and peace. That small amount of authority and knowledge helps my mental health. I have a cost-free, side effect-free, effective therapy available whenever I need it. Who would have thought it, orgasms are pretty great.

Slogging through hygiene

It’s the more unspoken part of dealing with chronic illness. If being able to get out of bed or going to a doctor’s appointment is a big win, taking care of your daily hygiene needs makes up all the tiny victories in between. It seems so simple. Just take a few minutes to clean yourself and your surroundings. All you need to do is brush your teeth, shower, shave, wash your hair, moisturize, trim your nails, change your clothes, etc.

But, simplicity rarely exists in our realities. Surviving the microseconds is where we live. When everything hurts, maintaining the squishy bag of fragile skin, holey bits, and perfectly balanced bacteria can be exhausting. Human bodies are a lot of work. They require absurd amounts of attention and finessing in order to not fall apart. 

Besides the compounded amount of time it takes us to complete a hygiene task, many chronic conditions change the process into a possible dramatic event.

Bruising, dislocating, breaking, scarring, and twisting are possible side effects of showering. Once you’ve worked up the energy to get into the shower, you have to find the strength to apply enough pressure to your hair and body to cleanse it. Your hands have to hold bars of soap and tubs of shampoo. You need to wring out washcloths and raise your arms. 

Dizziness and fainting are possible side effects of standing for more than a few minutes at a time. Stabbing pain, electric shocks, numbness, unfelt injuries, inability to stand or hold anything are more accompaniments to keeping ourselves clean. 

Hives, rashes, itching, raw and swollen skin can all be aggravated. Accidental exposure to allergens also occurs. Migraines can be a possible side effect of any activity or undiscovered trigger. Oh, don’t forget about nausea and vomiting from moving around or a drop in blood pressure.

Keeping dental, vision, and auditory health as priorities in our hygiene routines is extra important. Most of our conditions have some affect on those three areas. For example, people with connective tissue disorders, have a higher probability of gum disease and deterioration. Migraine sufferers can have tinnitus and auditory hallucinations that need checking. Autonomic issues include vision problems that should be monitored.

Many of us avoid or skip taking care of our entire bodies because we already suffer with so much that we can’t imagine taking on more pain, testing, and possible bad news. We also don’t want to be berated for our unconventional routines. In many countries, including America, medical care for eyes, teeth, and ears is also ridiculously expensive. There are ways around the costs. If you can get the courage and physical capacity together, there are cheap/free ways to visit the specialists. Unsurprisingly, the research and follow-up for practical healthcare falls on you.

Pain and fatigue are the most noticeable results of taking on hygiene hurdles. Halfway through a shower or change of clothing, you can be so depleted that you just stop. Maybe you crinkle down to the ground and lay on that cold surface with one pant leg on and the sleeves of a sweatshirt wrapped around your shivering body. Perhaps you sit on the floor of the shower, weakly reaching to turn the heat up a notch as you take deep breaths and rest your heavy head on your knees. You thought you could make it. You really tried, but now wasn’t the time. Later will be better and if not later, tomorrow. There’s always tomorrow if we make it through today.  

We know how much our mental health is tied to our surroundings. A cluttered room equals a cluttered mind, and whatnot. The same is absolutely true for our bodies. On my worst days, I brush my teeth. I do it lying in bed and over the course of ten minutes, but I do it. It is something that I take control of when my body is dictating everything else. When I can take a shower and change into fresh clothes, my mindset always shifts to a more positive place. For that small task, I did it! I accomplished “normal” and “healthy”. It pushes me and reminds me that my body can be good too.

You are doing the best you can. I hope today is the day you get to feel uplifted by those minutes you pushed through the agony and took gentle care of yourself.

Achoo!

Dealing with chronic disease forces you to expect the unexpected. New symptoms and weird manifestations of the disorders pop up all the time. Occasionally, a non-related medical issue will present and you have to figure out if it is truly a new symptom or a manifestation stemming from a previous condition. As you know, all those aches and pains that encapsulate chronic diseases show up in wildly diverse ways. 

One of my daily symptoms is nausea. It can be severe or mild, but it is always there. Because of this, when I’m coming down with the flu or even food poisoning, I have to rely on other indicators to figure out if I am sick. Does my body hurt in a different way? Which body parts are inflamed? Are my typical treatment methods unhelpful? Is this causing an unusual mental and emotional reaction? What is my instinct saying?

If it is a temporary symptom or illness, great! That means there is one less medical drama for you to worry about. Unfortunately, even short-term symptoms can trigger dormant issues. Once nerves are stimulated and pathways between the brain and the physical symptom are laid, you might face new permanent triggers and pains. 

A month ago, I broke my toe. I have broken this particular toe once before. Having EDS, alongside numbness from neuropathy, makes my extremities easy game for injuries. While I knew that this pain was different than my usual pain, my brain still sent out signals to the rest of my nervous system that it was under attack. Everything flared. Eventually, the acute pain of a broken bone and bruised tissue went away. But, now I have a new stabbing pain that happens in that toe. I already had burning, stabbing, and shocking nerve pain in that foot. There shouldn’t be room for new nerve pain. However, my brain is really great at forging those pathways. So, a new symptom (in this case pain) is the result of a temporary medical problem.

We are a group of people who are hyper-aware of our bodies. In fact, if you have taken the time to really dive deep into your ailments, you probably know your body better than most. We learn which twinges and pains are a part of our daily lives. New symptoms, especially dramatic ones, can throw a wrench in the fragile balance we practice. I’ve found that using an intensive mitigation program to slow and stop new symptoms works best. 

If I feel a sore throat or runny nose coming on, I immediately go into cocoon mode. Lots of fluids, anti-inflammatory foods, rest, and any proven supplement alongside a low-stress environment helps me heal. My body will fight and recover, but my brain is the part I’m really trying to soothe. I don’t want it to go into alert mode. It’s almost like singing the brain a lullaby, “Hush now. Everything is fine. Rest now”.

We can’t stop new symptoms. Catching common colds in inevitable (especially if you have a weakened immune system). Bodies are weird and you’ll end up with an eye twitch that lasts for a week, a cramp in your abdominal, or sciatic pain out of nowhere. There is no avoiding this. It simply comes down to managing these symptoms and harnessing all that amazing self-awareness to keep your chronic conditions in check while you move through the temporary.

Opioids and Judgy McJudgerson

Take a deep breath. This is going to be one of the most polarizing issues that we discuss here. It’s also going to be a long post. However, no matter how long the column is it won’t be long or detailed enough. Pain and pain management is a very complicated discussion. It is intensely personal and biased, even when science is discussed.  

My position is different from most people. The way I think about pain has changed over time. It can probably be split into three categories: before illness, start of illness, and chronic sufferer. 

BEFORE: I was anti-pain medication. From over the counter analgesics to intravenous medicines, I could not fathom the reason for pain management. Of course, I believed in acute relief. There are terrible things that happen to the human body which call for interventions. Beyond that, I had no experience with chronic, abstract, or intractable pain. 

START: Give me any and all medications that will provide a momentary respite from my intense suffering. I couldn’t articulate the level of pain I was feeling. There was no guideline or numerical scale that accurately described my agony. Doctors couldn’t see my pain. Therefore, they didn’t understand (and sometime didn’t believe) my pain.

At first they were liberal with pain medicine. Oxycodone pills, morphine drips, and fentanyl patches were used as stopgap treatments. Every intense pain and subsequent trip to the doctor or hospital resulted in less interest of my condition and less pain medications. I learned about rebound pain and opioid tolerance. As doctors began assuming my pain was psychological, and not their problem to treat, I was handed more materials about anxiety than tools for pain relief.

Throughout the first years, I just took what the doctors said as law. I thought that they knew best. But they didn’t. Their directions and pills were not working. I began experimenting with my medications. Changing dosages, doing research about their chemical compositions, reading medical reports about addiction, and diving deep into journals to find out why so many opioid and other pain medications were not stopping my pain. I checked up on the mind-body connection and alternative therapies. I read everything.

Because of that research and experimentation, I gained a new feeling of authority over my health. Doctors became a part of the equation. They were no longer the answer. I weaned myself off most of my medications and added some of them back slowly, at the lowest dosages that still made a difference in how I felt. Still, couldn’t figure out why my pain was out of control. I needed too many and too much medicine to feel any relief.

CHRONIC: It took five years before I found a way to control my pain at home. When I say “control”, I mean it broadly. My pain still strikes everyday. It still puts me on the floor and leaves me sobbing. Eventually, I found a doctor at a pain management clinic who listened to my woes. He understood my distaste for medications and wasn’t enthusiastic about prescription opioids. But, he wasn’t an all or nothing prescriber. A good doctor is a diamond in a field of glitter.

It took some time, but I found that Tramadol was the best pain reliever for my body pain. While it never helped my headaches, it made my days more bearable. It took the sharpness out of many electric shocks, strength out of the clamps surrounding my body, and weight off my tender joints and skin. The body pain wasn’t gone, it was just quieter for longer.

Even with that relief, I was still ending up in the hospital multiple times a month for migraines. I had finally learned the intravenous drug combination that proved most effective. For me, it was a combination of anti-nausea meds, Benadryl, and Dilaudid. No other combination or medications seemed to have the effect of actually stopping my head from exploding. Yes, I’ve tried everything you could think of both in and out of the hospital. Even things that shouldn’t be tried. 

Having found a small amount of relief from body pain with low dose Tramadol, I wondered if there was any way to find an at-home migraine stopper that I hadn’t tried. I went back and retried a few things over again: over the counter pain killers, antidepressants, antipsychotics, migraine aborting pills, fibromyalgia meds, antihistamines, morphine and oxycodone pills, a electric stimulator for the forehead, high-flow oxygen, a bunch of different herbs, acupuncture, tapping, meditating, and hitting my head really really hard with my hand until it hurt more on the outside than the inside. They didn’t work, again.

I explained to my primary care doctor that I was desperate not to go to the hospital for my migraines. Each time I went, I was vomiting, often unable to speak, hyperventilating, and in increased agony because of the hospital environment. The doctors treated me like a drug addict and it took hours to get my relief. He offered to prescribe me a pill form of Dilaudid. I was weary. No other opioids had helped. On the crest of my next attack, I took my typical anti-nausea medications and added a tiny milligram of the opioid. Nothing happened and I threw up the pills. I ended up increasing the amount of Dilaudid. It still wasn’t much and I knew that it had to make it into my system in order to be effective. So I took it before my next migraine got out of control. This time, I fell asleep. 

Anyone with pain knows, sleep is the ultimate painkiller. Truly, no medication is equivalent to sleeping. Most of us take a pain reliever so we can sleep because sleep is the only magic pill. On a side note, being woken from sleep with pain is extra shitty because you can’t rely on the bliss and magic of zzzzzs. So, that one opioid, out of all the medications, worked for me. It put me to sleep so that my body could stop the attack. Unfortunately, it didn’t prevent migraines. The frequency continued and I couldn’t take those pills every day. They would stop being effective but I was desperate to have a weapon on hand to put me in healing mode.

Then came the “experimental” procedure. It wasn’t a new drug or heavy dose opioid. It was called a Bilateral Sphenopalatine Ganglia Block and the drug was simple lidocaine. Lidocaine is a local anesthetic. It numbs a specific area for a short amount of time; most people have it at the dental office or applied topically for skin procedures. There can be minimal side effects but tolerance and addiction are very uncommon. Having Ehlers-Danlos Syndrome can decreases the efficacy of lidocaine. I knew from past surgeries that, yes indeed, my body did not numb easily. It was important that I shared this information with my doctor so he could adjust the medication dosage. It isn’t a difficult procedure, but it is uncomfortable. Lying on your back, hollow tubes are stuck up both nostrils. Over the course of 15-20 minutes, a solution of mostly lidocaine is slowly dripped down the tubes to coat the sphenopalitine ganglion. After an hour, it’s all over and you head home. There isn’t any recovery time except for a bit of an upset stomach and not exerting yourself for 24 hours.

Some doctors use less invasive methods with a simple nasal spray. I have found that the full tube directed drip is the most effective. I get four treatments over the course of a month and need to repeat the procedure every 8-13 months depending on my migraine uptick. The reason for the procedure is to numb that over stimulated collection of nerves in order to interrupt pain signals the brain is interpreting. So far, this has been a life altering treatment. It doesn’t change the intensity of my migraines but it has lowered the frequency. Even though it’s a small change (about 10% less) it makes a huge difference in my life. While I still get headaches everyday and have to take precautions not to trigger terrible migraines, the slightly lower frequency means that I’m able to handle attacks with my at home opioid. 

There are still occasions where my pain isn’t managed at home and I need to get intravenous treatment. I am ALWAYS treated like an addict and as though my pain isn’t extreme, Because of this, I won’t seek help for body or skin pain. I only relent to an emergency visit if I can’t stop vomiting or am passing out from a migraine. I use little tricks to alleviate my pain and constantly update my metal file of triggers. I have found a balance of opioid use in my pain management routine. I look forward to the day when I no longer need pharmaceutical interventions. My medical journey is still full of trying new and alternative/experimental/unproven therapies. Until I find peace elsewhere, I won’t be shamed or embarrassed to use every available resource that I need to make my days survivable.

Pain is real.

An obvious note: All of the medications and techniques mentioned are based on my personal experience. They are NOT recommendations. Do NOT take any prescriptions or drugs without medical supervision. Addiction and dramatic side effects, even death, are very real possibilities with any substance. Do NOT ignore cautions and warnings. If you think you are becoming addicted or dependent on an unintended medication, consult a medical professional. Addiction is NOT weakness and there is NO shame in needing help.

Life saving distractions

You aren’t lazy. Nothing about coping with chronic illness and pain equates to slothfulness. Each moment that you decide to stay in the fight is brave and exhausting. Every second that you don’t give over to the ease of eternal sleep shows enormous strength and fortitude. You are amazing and your struggle is acknowledged by the millions of us who gear up to face each day.

It is difficult to find distractions from pain and other loud symptoms. I often have to use multiple techniques at once. This might look like someone with an attention problem to an outsider. If I’m watching a movie, I’m also doing a jigsaw puzzle. If I’m listening to a podcast, I’m also baking. There are very few activities that I can do to distract myself from my pain. Layering different things together provides a mini-overload. My brain can’t process a crossword puzzle, television show, burning incense, and jotting notes down at the same time as it registers my leg screaming. Occasionally, the nerves win out. But more often, those small moments of distraction offer me a respite from the pain.

There are more distractions associated with living a fast-paced lifestyle than that of a chronic sufferers existence. From a constantly buzzing cell phone to multiple commitments for the same timeframe, few people acknowledge the joy they get from attention-divided actions. Their distractions get labeled as important, necessary, and work while someone with a differently demanding life will face scrutiny over their distractions with labels like interruption, attention deficit, and intrusive. While attention deficit disorder is a real affliction, it shouldn’t be the standard diagnosis for everyone who needs or wants distractions with their activities.

I practice singular focus often. Sitting down and only reading a book or watching a long documentary from start to end challenge my wandering brain and sharpen my focus. However, my symptoms are most pronounced when I can’t distract myself. Are all attention dividers negative if they are helping me soften the obtrusiveness of my pain? Or lower the overtness of other physical symptoms? Finding a balance between stillness (something I’ve written about before) and mental gymnastics is difficult. There is a lot of trial and error involved. Maybe your distraction to focus ratio is different than most others. That is okay. As long as you are functioning to the best of your ability, rock that weirdness.

Most of this might sound like a practice in contradictions. It is. Our bodies are constantly at battle with our desires. Our thoughts ping pong between variations of pain, joy, anger, sadness, and love. Some days your body tricks you. Giving out moments of peace and painlessness like aloe on a burn, only to leave you bed-ridden the next day. The bent and broken existence is full of oxymoronic and incomprehensible words, actions, and feelings. Learning how to listen to your body and taking decisive steps to achieve a comfortable mental and physical environment is vital. You are the only one who knows what you need. Do what you must to grab those pieces of sanity.

I’m just girl – Diagnosing part 3 (Postural Orthostatic Tachycardia Syndrome)

I just assumed that every person became light headed when they stood for an extended period of time. Standing up quickly or being overly active would always leave me with a spinning room and short light show. It was something I naturally compensated for through the years. I figured that everyone lived with these daily sensations. After all, the human body is a weird machine. 

No one in my family has much trust in modern medicine. From religious reasons to superstitious avoidance and general unease with the practice, I wasn’t brought up with doctor visits. The occasional trip for stiches or antibiotics did happen, but we never went back for follow-ups or took the entire course of medicine. With that foundation, I didn’t believe that my body had any deficits. Everything was just different levels of normal. Of course, I found out that perception was completely naive and even dangerous. 

In my late teens, I had a high-energy job that required me to be on my feet for 8+ hours a day 6 days a week. As time went on, I noticed that my dizzy spells were worsening and the techniques I used to settle them were no longer working. Grabbing a quick seat, stretching with a walk, or taking a meal break couldn’t stop my fuzzy thoughts or tunnel vision. Eventually, I fainted. Twice. The first time, I thought that I was sick so I went home and rested. The next time, work sent me to the emergency room. The doctor took one look at visibly perfect me and dismissed both episodes as dehydration. One bag of saline later and I was cleared to go. 

I began a heavy hydration routine. It did help, for a while. But the wooziness came back time after time. I learned to manage it by sitting, leaning, and laying my way around the episodes. Then, in my mid-twenties, my heart started giving me trouble. Research suggested it was anxiety or panic. But I didn’t feel anxious. It was always worse when I was doing cardiovascular activities and at night. It got so bad that I was actually scared. Sometimes it felt like I was having a heart attack. Other times it would leave me short of breath or dizzy. I went to a doctor. Without doing any tests, he said it was panic attacks. I knew it wasn’t wasn’t. I didn’t have any anxiety. I left the office feeling frustrated and chose not to take the drug he prescribed. This was my first chance to be my own medical advocate. It wasn’t a perfect example of standing your ground but it was a start. 

The feeling continued so I scheduled another appointment with the doctor. This time he listened to my heart and took my blood pressure. My bp was low, he said that was good. But I wouldn’t stop hounding him about how I was feeling. He ordered a small wearable device that monitors a heart rate for two weeks. I wore it around for my normal activities. It would beep on occasion and I figured that it was going to give me answers to my heart problems. It did not. The doctor told me that I had some elevated heart rates and palpitations but that they weren’t unusual. His professional advice, “avoid unnecessary stress and don’t worry about it”. This doctor was telling me that my physical symptoms were purely psychological manifestations. 

I felt like an idiot. Nothing was really wrong. I was being a drama queen. So, I just lived with the uncomfortable symptoms. I told myself that I was just being weak and pushed myself harder. Too hard.

Two years later, I landed in the hospital. I had gone in for my routine gastroparesis related colonoscopy/endoscopy. They wheeled me into the procedure room and hooked me up to all the monitors. Minutes later, they declared me unfit to proceed and took me to the Emergency department. The doctors said that my heart rate was too elevated to do the test and it wasn’t safe for me to go home. After 4 hours in the E.D., I was admitted and sent to a room. 

My resting heart rate was averaging 130 bpm. My resting blood pressure was averaging 65/95. Any movement, stress, or even just randomly, those numbers would jump: 210 bpm and 60/80 bp. It was such a precarious situation that I wasn’t allowed to go to the bathroom, bathe, sit upright, or do anything. At one point, my rates moved so spectacularly that a code was called and I was treated to certain heart saving protocols. 

12 days into being a living curiosity for these doctors, they finally diagnosed me with Postural Orthostatic Tachycardia Syndrome. The test that actually identified the condition was wild. It included standing against a revolving table. You get strapped onto it and it tips in different directions. Small pads are stuck to your body to measure sweating, heart rate, and blood pressure. Fainting during the test is a good possibility but they prepare for that. Eventually, they found a good combination of medications that kept my heart rate down and my blood pressure up. I began doing physical therapy and was cleared to leave 2 days later. I was lying in that room for 14 days total. My muscles began to atrophy and I lost 15 pounds. I felt a strange mix of crazy (reference the hospital PTSD story), exhilaration, and scared leaving. But at least I had a solid diagnosis. I wasn’t just making it up.

After some time passed, I researched POTS. As it turns out, young women are the most affected population. Their symptoms are often misdiagnosed because of gender bias. Exhaustion, dizziness and fainting are commonly treated as eating or emotional disorders. Many other symptoms are explained away as anxiety, depression, hormones, hypersensitivities, and the need for attention. All of this is sad. None of it is surprising.  While testing for POTS is not widely available, there are simple pharmaceutical and accessorial treatments that can be tried if your doctor suspects the syndrome. Small changes in diet and exercise can also help.   

As I’ve repeated time and time again, trust your gut. Understand the psychological component of physical symptoms but don’t discount how well you know your own body. If something doesn’t feel right, insist on a second or third opinion. Many of us with broken bodies go through a decade or more of misdiagnoses and unhelpful medical advice. Even with great doctors, some conditions are just not yet labeled as real disorders. Finding relief from your symptoms is not a luxury. It’s a necessity. 

Like. Lust. Love

Developing and maintaining a romantic relationship isn’t easy on the best of days. We all carry baggage and have expectations that we place on the other person. Even if someone’s situation is “perfect”, they will bring trauma and scars from their past, often subconsciously.  When it comes to handling romance with bent and broken bodies, the obstacles can feel unbeatable. But, they aren’t.

Let’s start with dating. The word alone can cause a flood of anxiety. It’s a world where possible partners take a quick look at a picture, then swipe either approval or dismissal, before personalities are even brought up. Do you have an obligation to disclose your medical issues during the picture or chat phase? Is it fair (to yourself) to tell that information to a stranger; a screenshot of a person who may or may not be real? How much should you share and at what point? People already ghost, catfish, and harass matches. There are good reasons to be cautious about sharing personal information with pseudo-strangers. But the question remains, shouldn’t attraction be completely honest and vulnerable?

Most people with visible disabilities acknowledge their differences in their profiles. While the same pressures over broken body dating are present, the worry about how and when to show those differences is off the agenda. Most of the time app-based dating presumes the best of people. We go on it with hope that everyone we are attracted to is presenting accurate versions of themselves. The same can be said for in-person dating. Maybe a friend set you up or an attractive person had the guts to ask you out. No matter who it is or how they found you, everyone is looking for a person they can be their most genuine self around. 

Being a woman in the dating pool has its own set of problems. Add to those a difficult medical situation… it’s just so freaking complicated. There is a lot of hope and excitement around finding new love. Physical encounters and some emotional turmoil inevitably happens. Eventually, someone wanders onto your path that you really like. Maybe a first date, or even a second, goes by without acknowledging your health. You’ve found ways to navigate the dates around your hurdles. Smiles and chemistry abound! At some point, it feels like the right time to tell them about your body. You owe it to yourself and them. But, you don’t want to put a shadow over their new-like filter. You don’t want your health to be the only topic of conversation or for your date to start acting strange. Even worse, what if they can’t handle your lifestyle and they disappear. It sucks, but you have to pull the plaster off sooner rater than later. 

I recommend peppering notes about your health throughout conversations from the beginning. Perhaps there is a moment when they ask about what you’ve been doing for work or school. “I had to take some time off to deal with health stuff” is a perfectly acceptable response that you can parlay into questions about them. Another example, “Because of my health stuff I can’t run anymore but I love swimming. What’s your favorite water activity?” By doing this, they (hopefully paying attention) are provided with a jumping board for asking about it and you have a way to bring it up organically. I’ve found that this is a great way to start the process without overwhelming them with all the details upfront. Remember, they probably have mental or physical crap they are dealing with too. We all do!

Some people feel that it is mandatory to bring up their health issues immediately. That is completely fine. There is success in dating with a warts-and-all up front mentality. I’ve just seen, in this age of dating, that people can be put off by the overshare. There is a subtle dance taking place during a date. Stomping on toes out of the gate might hinder your dance partner’s ability to see your other graceful moves. No matter the advice, do what feels right to you when dating. Be yourself. Trust yourself.

The lust part of forming a new relationship is usually wonderful. Covered in the weird chemistry cloud that sooths everything bad and makes you smile uncontrollably. It’s usually all wrapped up in physical contact and intimacy. Pain and other symptoms can throw a cold towel over that fire, even when you desperately want it to burn. 

The best way to approach the possibility of symptoms during intimacy is with an honest discussion. I know that many people find sex talk to be awkward or even taboo. Here’s the thing, it isn’t a big deal. We all have sex. It looks different to everyone and each person has their unique preferences and boundaries. When it comes to broken bodies, voicing desires, deal breakers, and possible speed bumps is the only way to guide both parties through a positive sexual encounter. If the person you are sharing with decides that they don’t want to accommodate your needs, then so be it. They aren’t the right fit for you. If, on the other hand, they are open to moving forward with your needs in mind, awesome!

In the sex realm, getting over shyness or undeserved shame around the subject can be easier then you think. First, you both have bodies. Your bent bits have a counterpart in your partner. Even through the perfecting haze of lust, know that the other body has its own issues. Next, you are incredibly attractive. I know! What a wild thought! There is someone, probably many people, who find you and your package desirable. You, the total you, deserves to be treated the way that you treat others. The right people in your life will fill this need. Finally, talk about sex by asking questions. It’s the most powerful tool in the communication toolbox for a reason. Every time there is an opportunity to ask the other person the same question they asked you, take it. Especially when it has to do with physicality. 

Of course, if you are already comfortable with your sexuality, keep rocking those flirtatious moves and questions. Just don’t forget to be honest about your needs around adult playtime. Mentioning pain triggers and ways to ease symptoms can be a fun part of the interaction instead of a problem.

Like in real life, love comes on the heels of lust. Wait. Let me rephrase that. Love usually accompanies the later stages of lust. 

It would be unfair, and pretty crappy, to hide any medical issues from a partner at this level. One of the craziest parts of love is our vulnerability. We show the best and worst parts of ourselves to someone else and see if they stay. They do the same to us. I’ve been in situations where lies and withheld truths come to light just after the love phase has started. Not only were those experiences painful, they left either myself or the other person feeling like the entire relationship was fraudulent. Some of us might be able to hide our disabilities better than others, but it doesn’t mean that we should. Excuse such as, “saving someone else from worrying”, “they don’t need to know”, or “it’s not their problem” are completely bogus. Those are just ways to cloak the fear of “if they know my weaknesses, they might leave me”. 

I’ve mentioned this before in my relationship posting, but if a person can’t deal with you having health problems it doesn’t make them a bad person. You can still be frustrated, angry, and sad about their leaving. Some people just cannot cope with everything that comes along with having a bent or broken partner. The right ones will stay. You’ll endure one another’s challenges together. Those hard times will give way to wonderful experiences and feelings of home. If you are really lucky, you’ll get one of these loves. If you are fortunate, you’ll get many of these loves. If you are everyone else, you’ll get a taste of these loves. Just stay open and be honest. Maybe you’ll be the lucky one. 

Response required yesterday to a letter received today

We try, desperately, to meet and match deadlines set by the world. But, from work to leisure, time works differently for the broken. Our bodies’ needs outweigh our desires to keep up with a “normal” pace of life.

On the truly terrible days, I can’t function. I can’t leave my bed. Every micro-movement, even just laying still, causes agony that doubles down on the internal pain radiating from my nerves, muscles, and joints. Hell-level migraine days see me curled into a ball crying, vomiting, and losing my will to live. There are moments where my stomach refuses even water and leaves me panting on the floor of the bathroom from pain and incessant retching. When I can’t stand the pressure of cloth, water, or even air on my legs and feet without shuddering and the times where my hands radiate heat and my skin itches like I was dipped in stinging nettles… I become useless.

Depression, anxiety, obsessive compulsions, and so many more mental health issues are also inextricably involved with having chronic pain and diseases. How are we suppose to operate on a timeline set by non-sufferers when we can barely make it through some days? Where important deadlines are concerned, we can’t control the readiness of our mental, emotional, and physical states. 

No matter where in the world you live, you have come across the obstacle of strict deadlines in relation to your health. Maybe it has been from government agencies, hospitals, doctors, family, or work. Communications are sent your way with threats about complying with their timelines. Your benefits will stop! Your appointments will be canceled! Your value will diminish! Your help will disappear! The phrasing is always a mix of aggressive and cold. They remind you that you and your conditions do not matter to them. You are just a piece of paper, a number or name to be pulled through their systems with hooks that only they have the power to release. 

I don’t want this to sound conspiratorial. It isn’t a theory or comment on modernity or automation. I’m sure we all have plenty of opinions on those issues. My attention to the problem of deadlines has heightened ever since my body became my boss. Every day I seem to be fighting other people’s versions of time.

Recently, I had to cancel a procedure the night before because I came down with the flu. The doctor would not have been able to preform the procedure and I would have made everyone else sick in the clinic. So, cancelling was my only option. I had paid for it ahead of time and had been a patient of the clinic for many years. The procedure was also part 2 of a 4-part series. This meant that I was already scheduled for the next appointment and had plenty of time between dates. The clinic knew my medical history and dealt with mostly intractable pain patients. They are constantly handling people with unpredictable bodies. The procedure was scheduled for first thing Monday morning. I left a voicemail with the office on Sunday night apologizing for the need to cancel. I even set my alarm and called again an hour before the appointment on Monday to leave a follow-up apology and confirmation of my cancelation. Thirty minutes after my appointment time, they called me. I was sleeping and it went to voicemail. When I checked later, it was a terse message from a nurse asking where I was and if I was still planning on showing up. Two days later, I received a letter in the mail. Now, this is a letter I’ve gotten many times before from various doctors and clinics. It’s a novel method of communication used to shame and scold patients who have to cancel outside of the required 24-hour notice window. The letter told me that my patient-hood was on notice. Canceling or not showing for an appointment was an offence and if it happened again, I would not be welcomed back. 

It didn’t matter that I had called and canceled at my earliest availability. It didn’t matter that the clinic is part of a major hospital and all communication goes through a central phone system instead of to the clinic directly. It didn’t mater that my years of being a patient and thousands of dollars spent annually would continue. It didn’t matter that the doctor had no say in the letter and that it is all handled by automated systems. It didn’t matter that their doctors can call out sick, be hours late, or miss an appointment due to an “emergency” at any time. It didn’t matter that I, and most of their patients, can’t predict our symptoms and illnesses. In their eyes, I had acted against policy and deserved punishment.

Every year I fill out forms, get doctors notes, and do phone interviews with faceless voices reading over checklists in order to obtain low-cost health insurance. It’s a hassle and can often feel as though I’m pleading with illogical forces to understand the state of my medical and financial needs. 

When various agencies gather this information, they mainly communicate via postal mail. There is a different agency for every part of the process and none of those groups communicate with one another. They also don’t know what is going on at the other agencies nor do they know how to assist with any questions outside of their tiny boxes. They send a lot of mail and have a lot of unintelligible rules. You have to wait to hear from each department, read every letter carefully, and answer any questions the best you can. Often the information doesn’t make any sense. 

Most importantly, you MUST obey their insane deadlines. For example, I received a letter on a Friday afternoon and was told that my medical insurance would be terminated if I did not complete an interview by that Monday. There was no online option for the interview. There was a phone number that is active Monday through Friday 8am-3pm or an appointment could be made (how?!) to visit the local office to complete the request. Anyone who deals with these agencies knows the near impossible task of getting a human on the phone. I have been put in the queue for 90 minutes for the initial pick up only to follow that with 4 additional hours of holds and transfers before getting to someone who could help me. This has happened multiple times. I also avoid their local offices at all costs since they operate in their own timeline where waits are hours long, people are never seen, and they decide to close indiscriminately throughout the week. 

I was able to fulfill their request this time, but what if I had been too sick to handle the call. Or too incapacitated to read the mail and gather the needed documents. My health insurance would have been taken away.

Notes from employers and friends follow the same theme, just with softer words. The world is full of people and places that require future assurances to be made today. Saying yes to an upcoming event or promising to speak at a conference is the way our society operates. People don’t realize that the ability to honor those commitments is out of our (the wacky-bodied) control. We want to participate in activities but our bodies dictate our reality. And sometimes, a lot of the time, my body is a real party pooper.

I’m at the point where I hesitate to say yes to any future event. I’ve had to back out of weddings, birthdays, flights, phone calls, doctor appointments, meetings, etc. at the last minute. I end up feeling terrible about the perceived “flake” and my reasons can come across as excuses to those affected. These cancelations have cost me time, work, money, and different types of relationships. I now qualify every yes with “if I’m feeling okay”. My okay is so different than other people’s okay that it doesn’t really help. It does mitigate a small portion of the guilt and anger I feel for not being able to follow through. I also go overboard with my apologies, gifts, work, favors, and such to show my appreciation for their understanding.

Organizations and businesses, especially governmental and medical, usually don’t accept an addendum to commitments. Follow their rules or else! I don’t agree with that attitude and I don’t think it needs to exist for a group to function effectively. There are exceptions to the rule and new ways of operating should always be considered. From grace periods to malleable scheduling, there are ways for both parties to succeed in maintaining a partnership/clientship/patientship. Treating people like the wonderfully complicated individuals they are is the only way to ensure loyalty and satisfaction.

Suffering with responsibility

A few times a year, one or two celebrities pop up in the media because of a chronic pain related medical diagnosis. This type of sharing seems to be on the rise. There are good and bad aspects to pointing a spotlight on under-explained conditions through a celebrity lens.

Often, the headlines focus on how the celebrity has suffered exhaustion and needs to reschedule or pause their current projects. An emphasis is placed on well wishes and very little if anything, is written about the amount of non-famous sufferers. A few general terms (mostly pain and fatigue) are put as the condition descriptors without clarifying the wild variations of these, and many other, symptoms. If the celebrity is interviewed, they rarely explain the deeply debilitating nature of their disease. It all gets brushed over with a glossy finish leaving the reader without needed information about having a chronic condition.

When it comes to the reality of being a public figure with a chronic disease, money and fame don’t make the emotional part of having a painful medical condition easier. Everyone suffers from an amount of pain and daily symptoms that make a huge impact in their world. Of course, money and fame can make it easier to live with the disease.

Access granted by having money and prestige

Top-notch doctors all over the world

Individualized treatment options

Experimental procedures

Expensive medications

Alternative medical procedures, drugs, and therapies

Physical and occupational therapy

Nutritionists and chefs

Home care workers

Daily self-care products and experiences

Mitigated stress over finances

Focus on mental health

A voice and platform to advocate

Problems unique to having money and prestige

Constant lack of privacy

Worldwide scrutiny of image and physical looks

Leaked medical information

Being used for drug/procedure/doctor/company promotions

Inability to stop seeking attention

Career dependent on being able-bodied, mentally healthy, and beautiful

I’m sure that there are many additional problems and benefits to coping with a disease in the public eye. They still have to deal with the ridiculously difficult process of diagnosing. Misdiagnosing still happens and doctors will still have biases about pain conditions. We all go down weird and bumpy paths to try and understand our new bodies. Celebrity or not.

Before my body broke, my career was heavily dependent on being able-bodied. Being physically attractive and energetic were also critical to sustaining success in my field. I still mourn that life and the ways that my body aided my career. I imagine that feeling is heightened exponentially for celebrities. Instead of a “fall from fame” they are pushed over the cliff by the very thing that created their popularity and financial freedom. Sometimes they are young and have known nothing outside of being a public figure. That possibly being taken away is likely as overwhelming to them as it is to the rest of us. We all went through (or are going through) that chaotic cocoon phase from pre-bent to bent and sometimes broken. 

There is a lot that people with an international platform can do to bring positive attention to desperately under-researched conditions. Highlighting the amount of people facing undiagnosable or misdiagnosed chronic diseases is important. They could be honest about the level and types of pain they experience. Learning about the lack of accessibility across all parts of our medically challenging lives is important. Acknowledging the huge support disparity between people who suffer from invisible conditions and those who have visible physical issues. It would also be wonderful to see these celebrities lend a voice to the stories of people who consider or have committed suicide because of pain or symptoms.

The famous amongst us don’t actually owe our ever-growing community their support. Public figures can choose to only share sweetly spun messages of strength and broad explanations of their medical journey. Some of them have the luxury of not being defined by their conditions and they will leave it in the shadows. I get it. The temptation to distance one’s self and career from the ugliness of pain and symptoms is strong. Sometimes I wear bright lipstick and walk through a grocery store like I’m totally “normal”. I have people in my life who don’t know about my illnesses. I don’t spend every day talking about my busted body. But I also don’t shoulder the responsibility of having access to millions of eyes and ears. 

Every time a rare or less-understood medical condition is in the news, it brings attention to our quiet yelling. Someone who is suffering and confused might feel hope and consolation that they aren’t in it alone. A researcher might get inspired to investigate treatments. Celebrities sharing their medical dramas is a new reality in a world with fewer barriers between a person’s public and private lives. For them, it is a blessing and a burden. For us, it is a chance at being heard and seen. That magnifying glass could help one or even thousands. Let’s shine those lights even brighter.