Well it’s CRPS/RSD awareness month and Station 19/Grey’s Anatomy has started up again. A PERFECT time to address CRPS and the great “drug addict” assumption finally.

If you guessed they didn’t address it AT ALL, ding ding ding, you win.

As predicted, he’s magically healed, in drug rehab as the main focus, and we never even understood what actually happened. So to someone with no CRPS experience or understanding, this guy “caught it”, got addicted to drugs by choice, and “had a magical surgery that completely healed him and now he’s in drug rehab because that’s really all we can focus on”.

For a team of writers who have done such extensive research on how to portray sensitive issues and certain conditions so, so well, they dropped the bomb here. CRPS doesn’t magically go away. Can it go in to remission after extensive medications (and that means trying tons and tons of them and getting all the nasty side effects)? Absolutely. But it also requires SERIOUS amounts of physical therapy and special conditions for remission to occur, and even then its rare. It’s more like you managed to shove a massive poofy prom dress into a tiny box and sat on it. It might stay in there for a while, but eventually if you move it just wrong, BAM, POOF, it explodes everywhere. A mass of glitter and tulle. Which, if you know anything about glitter, it never goes away.

This goes straight back to my point. The writers CHOSE to ignore a perfectly amazing story line about the struggles of being judged and the difficulty of recovering from an injury with a permanent disability. Many people with CRPS do go back to work or try to with accommodations (which is a whole other battle since companies rarely will make their legally obligated ADA accommodations) and have to fight through the brain fog, pain, nausea, and other horrifying side effects of whatever new medicine has been shoved at them. But instead we hear about a magical surgery (less than 20% effectiveness in reality) and he gets some pain meds and BAM “I need time away to go through drug addict recovery steps”. Then he’s up and walking 90 days (we assume based on what they said) later.

So what did they do wrong? Well, #1 they made this about drug addiction for a pain condition, once again laying an assumption and the blame on a patient for something out of their control. #2 They made it seem like there is a CURE. There isn’t. Period. It’s called Chronic for a reason. #3 They just made it a seasonal adventure and tossed it away, just like they do with at least one character and Cancer. Except they try to at least show the pain and exhausting associated with the treatments. They didn’t even do that here. #4 They made it all seem like a personal choice.

As someone with CRPS, this makes me frustrated and angry that they couldn’t even do the BARE minimum to explain the condition properly and the treatment that doesn’t actually exist.

Oh and let me just add, because I am ESPECIALLY pissy right now, Grey’s Anatomy just ruined Bipolar once again. A main character with it, they decided he needs medication and therapy, totally acceptable, but made sure throughout the series to mention how his manic state made him make mistakes and kill someone, and blame all of it on mental health and personal choice. Is Bipolar a tough road that involves crazy manic episodes and huge depressive waves? Yes, for some even with medication it still happens. It also makes people brilliant. It means you’ll ruminate on something for a very long time, that you can be out of your mind sad or excited. But once again, they HAD to make it a tragic story with the Bipolar guy going ballistic, even when he was right and NO ONE apologized properly, and they have to make it seem like he’s going to get a magic pill and some talk therapy and BY THE POWER OF MEDICINE BE HEALED. Just in case you didn’t know the likely reason for this, it’s because all the other characters are constantly cycling through depression, PTSD, mania, and god knows what else, so they have to make “actual conditions” over the top and extreme to try and show “they aren’t like other people”. Not an inaccurate idea, but there is a much better way to go about it that would give them a “showing the lives of the characters” stance AND be factually accurate without further demonizing a marginalized and judged group of strong individuals.

For once can we stop making mental health mean someone will ALWAYS do something bad and chronic conditions can be magically healed.

Quit marginalizing us. You have an audience of over 7 million people on premier nights, yet you let that all go to waste for a need to tell an interpersonal story and ignore an already ignored and often assumption riddled community get further assumptions dumped on them.

Take responsibility and step it up for some actual accuracy. I don’t want to keep seeing every medical show out there magically diagnose people in 30 seconds with a rare disease and never mention the difficult testing involved and the fact they keep getting ignored or the fact there are often little to NO long term effective treatments.

Get your shit together. You had 6 months of quarantine to figure it out.

You know the old saying “you’ve been so bad, bread and water for dinner for you” we see in every movie? I’ve been living it. Sorta. Just a warning- there’s a LOT of puke in this tale. skip if you’re squeamish.

Some of you may remember the great “food loss” of 2019. Starting in May, I stopped being able to eat properly. Eventually by October I was down to literally baked potatoes and gluten free rice crackers. But I started to get foods back slowly. And I started to hate baked potatoes for a while. Until April this year. I was enjoying lentil pasta and goat mac and cheese. Then, I got an ear infection from the vomiting that started back up and aspiration in to my eustacian tubes. This was a mess (there is a much longer tale but I’ll cover it eventually). My stomach got worse and worse. All the great food additions we had went away. Everything started coming back up violently and my autonomic system/vagus nerve got involved.

As a result, we tried to calm my system with the only thing it wouldn’t throw back up: toast. Toast with butter or dry. And water. But not too much because, unfortunately, my stomach doesn’t absorb water properly. it sits and sloshes then comes flying back up. As the month progressed (and COVID made my special foods even harder to find) we tried other things: custards, ice cream, tea, gluten free bread. Nothing really worked for too long.

Finally I had a brilliant idea (yes I get credit for this one). PUDDING. It’s not liquid or solid, we can add my boost like powder (it’s actually Walmart’s fit4life brand made from coconut oil), AND I can’t puke it back up. So pudding it was. Vanilla only, occasionally we added a drop of chocolate for variety. And a super dense cake like bread made from lots of eggs and gluten free flour baked together. The combo usually works. Ritz crackers settled better than saltines.

The down side is that it’s not nutritionally complex, again. I’m constantly dehydrated and not need more fluids than normal. Low grade fevers started popping up a month and a half ago (likely due to dehydration). My blood pressures dropped even lower (I can’t consume enough sodium or absorb it enough to help). To complicate things further, I developed severe stomach pain. Touch or press and I’ll scream at you. That started in May. It’s been months and no GI doctor will take me. The scan they sent me for showed nothing (of course- because a contrast one would have required pre-medication and apparently that’s difficult [side note here: I will cover my successful pre-medication and the SIMPLE process it was leading up to using contrast for my PORT study.])

Anyway, I digress. I’m back to pudding and toast. We started me on a low dose of Valium (partially to help control possible mast cell mediated responses- it’s a stabilizer, and partially due to some really great input from a support group member) In addition to the gastroporesis, and all the meds also slowing my gut down, I seem to have developed a Cyclic Vomiting Syndrome LIKE condition. If you look up CVS, it’s nasty, severe, horrible, and not exact me. I don’t require sedation. but upon speaking with a young woman around my age with similar conditions AND a prior diagnosis of CVS, she explained hers started like mine. She guided me to some research to see what medicines MIGHT help keep it under control. With my doctors approval, we started some low dose valium. It stopped the CONSTANT painful nausea from the moment I woke up to the moment I went to sleep. It slowed the vomiting, some.

But now it’s back. We just added in poutine- Thanks Canada for this magical creation- and not apparently things are worse. my vomiting episodes now last 30-45 min, require 2 zofran (because my IV phenergan CANNOT be taken with Valium and my doc refused to prescribe a different medicine than Valium). As some of you know- Zofran gives me migraines and messes up my GI tract even more every time I take it. So now I am back to croissants (less choking hazard than regular bread) and pudding for a few days to try and calm things down.

I know it sounds crazy but honestly (pregnant women or women who had been pregnant you will get this) everything makes me sick and everything makes me upset. My cravings are insane but my stomach won’t let me eat. For those of you who haven’t had the joys of a rough pregnancy- imagine food poisoning puking/extreme hang over, how horrific that is, then imagine you can’t get up the next day or the following and go get whatever you want to eat. The feeling never ends, the nausea and vomiting don’t stop, and you get no warning. Previously, I was burping so much and so loudly we knew before I got sick because it intensified [yes I really did burp for a solid 2 months non stop…ER said it was an ulcer…]. Now we have virtually no warning, sudden pain and hot flash, then projectile vomiting that just doesn’t stop.

As a result, I’ve developed some wonderful [not medically approved] ways to handle it. Including flooding my stomach with water or milk to dislodge stuff that gets caught in my esophagus and makes the vomiting worse [it’s either going up or down at this point], milk to coat my teeth and throat from the acid, honey will save your throat as well, saline rinses for the nose, and hyperventilating style breathing to help me pass out so the zofran has time to dissolve and get in to me. NONE of this is medically recommended, half of it is probably a really bad idea. But since no doctor wants to help, we’ve resorted to what we have found works. Half the battle is trying to get my blood pressure out of heart attack zone and my heart rate down so i can actually calm down.

Fun fact for you- when the vagus nerve gets involved, it triggers this unusual response for me of a squeezing sensation that just won’t stop. Like an internal gut spasm. And that in turn makes me more nauseated and more vomit. On and on and on again it goes. So we try and trick it as best we can because all those wonderful “anxiety and panic breathing techniques” are completely useless and make it worse.

So back to the toast and pudding- right now I live for my butter croissant’s and pray that the pudding stays down. I’m dreaming of fried chicken and onion rings (mainly a missing nutrition craving here- I remember keto cravings, so I know exactly why I want those things) and hoping I’ll get out of the cycle soon. Because honestly, I’m actually starting to miss those stupid baked potatoes but I DO NOT miss choking on noodles…

Today officially marks 2 years since the big bad incident that turned my world upside down. The freak-of-nature style accident that wrecked my life as I knew it.

It’s been strange as I have reflected upon all the other times in my life where a “freak accident” very well could have caused this exact same thing to occur, but didn’t. Since we now seem to have determined there is at least partially a genetic component to this (meaning I was already destined to have these conditions it just took the right mi of circumstances to trigger it) it’s miraculous how long I made it before all the insanity struck.

Between strange viruses as a child (not being able to walk randomly for 3 days was pretty insane), to getting knocked off a bike while sitting (not riding) it by someone else riding a bike (head injuries hurt), to my glorious CRPS first incident, it’s been a wild ride. Back in college, between the college dorm black mold exposure to falling down a flight on stairs knees first, I’m shocked I didn’t wind up with some of this strangeness manifesting itself. To my trip to Europe and altitude induce respiratory infection and my China trip adventure (A series of insane illness/freak things like bed bugs and contamination)- I seemed to walk away unscathed. My PCOS adventure round 1 at 13 and subsequent appendectomy surgery (yay birthdays) followed by the round 2 adventure at 20 (thanks for using a staple for that surgery in a juvenile with PCOS guys…it was oblivious going to get dislodged). Again all unscathed by this. I walked away just fine it seemed.

But for some reason, despite all those occurrences happening when I wasn’t at peak health, one stupid Portuguese man o’ war vs. super healthy me equaled the perfect disaster.

I guess we can also review the progression of symptoms as a major factor as well. Being laid off then bed bound due to the constant vomiting and fainting led to muscle weakness which allowed my apparent hyper-mobility to appear. And I suppose my stomach issues getting worse could also be contributed to the disastrous combo of medications plus food reactions and withdrawal. But at the end of the day, 2 years after the incident, I’m 10x worse than I was right after. My cognition (while better than it was a few months ago) is still no where near where it was 2 years ago. Same with my mobility, I’m now completely reliant on constant help and care.

September is a bad month for me.

September marks 12 years since my first mental breakdown (medication induced) and my diagnosis of Bipolar and Depression (followed rapidly by anxiety, panic disorder etc). It marks the beginning point of a journey through medications that made me numb for years, a battle to find a good therapist, and an eventual success of finding an incredible psychiatrist whose stuck with me. But it also brings up seriously dark memories. A major break-up years ago that was much needed and a realization of what emotional abuse and manipulation was (don’t worry, that person is now very very far away from me forever). The start of an eating disorder (triggered by one very sucky doctor). The manifestation of a lot of problems happened right here- the beginning of school it seems.

But September also marks a time where I realized achievements. Where I overcame an eating disorder over 3.5 years ago thanks to an incredible human being in my life stepping up and helping me learn to love myself and get healthy. It marks when I officially got my Bachelors in the mail 4 years ago. It marks when I officially realized my best friend and the best human in my life was always going to stick by my side through all kinds of chaos. It marks when I started a great job 4 years ago that allowed me to move up in to restaurant management. It marks my promotions, the beginning of a job interview for a job change, and when i was originally scheduled to start coming off my medications.

September is complicated. Today is complicated. I’m a mix of emotions and sadness, anxiety and depression, anger and confusion. I’ve been unwell most of the day (Week actually) with my stomach rejecting foods again, low blood pressure and a fever creating worse dehydration and thus confusion, and I’m at another withdrawal threshold. This means it just plain sucks.

Looking back at everything (yes I’m only 26 but I swear I’ve had 2 lifetimes worth of experiences at this point) part of me is angry at what happened. Angry at all the calamity that seemed to emerge in my life, the interruptions, the divergence from my chosen path, and the reliance I now have on the charity and kindness of others. But another part of me is grateful. Grateful for what these experiences have shown me about myself and about the world around me. Yes this experience is horrible right now, horrific even. But maybe, just maybe, it’s going to make me a better and stronger person. I’m not at the end of the road yet (apparently this is a multi year, multi chapter adventure…) but that’s just another page in my book.

I’m a mix of emotions, disappointment mostly. Amid it though is hope. Hope that (since nerves take around 2 years to regenerate) my nerves will start healing, maybe this can be a turning point. Hope that I can view this as the apex of the story and the climax is over, now we just begin true healing. Healing both mentally and physically.

I think I’ll just try and focus on that.

I apologize for not writing for a while, it’s been a very rough few months and a myriad of new and reoccurring symptoms. But more on that later.

Today we went to meet with a geneticist/ EDS testing specialist. EDS, or Ehlers-Danlos Syndrome, is a common comorbidity with MCAS and POTs. Since my rapid decline and now almost 100% bed bound nature, my joints have started “slipping” out of place. Actually it’s called Subluxations, AKA minor shifts of movements with the joints sliding slightly out of the proper place without doing anything to cause it, but it doesn’t require any type of emergency medical treatment like a dislocation. Ribs sliding around, TMJ, the entire adventure. My main doc saw my creepily flexible hands and fingers and decided pursuing testing would be valuable. So we did.

This specialist also works on mitochondrial disorders and a ton of other conditions, but main she sees tangled webs like mine and hyper-mobility in some form. Hyper-mobility is a generalized term for EDS style disorders (there are 12 sub-types of EDS and a few other styles of conditions that include hyper-mobility).

As of today, I am officially classified as Hyper-mobility Spectrum Disorder (HSD). This means I was on the cusp of hype-mobility type EDS but missing just one or two of the minor symptoms. So once again I’m half in, half out, of a condition. The down side to EDS in general is there is VERY little treatment options to help. There isn’t a cure. It’s either genetic or triggered by an autoimmune illness of some kind and the focus is entirely on management of symptoms. So basically more ineffective meds or physical therapy….sorta. It doesn’t shorten a lifespan or cause a death sentence or anything, it’s just more complicated.

The biggest problem is genetic testing is a small fortune (think 5k for the cheapest comprehensive and 20k for the specialized comprehensive). So that’s now out of reach. Could it change my diagnosis and rule out officially other forms of EDS (like the vascular version which poses some unique risks)? Yes, but again, as per her thought- it’s unlikely to yield results. The same goes for a mitochondrial study that would investigate if there is an genetically linked malfunction of my mitochondria. We can’t 100% rule anything out without a full test, but the cost is exorbitant, and disability income plus no insurance plus medication and IV needs = a massive monthly deficit that I can barely fathom despite living it. The same goes for in-depth autoimmune condition testing (AKA a ton of blood work and labs run to rule out or in other possible conditions) but we don’t even know what to look for at this point.

But this does put IVIG back on the table. Previously my main doc had serious concerns due to my immobility I could throw a clot (or have an allergic reaction to the actual infusion…). But this new person thinks it’s worth a shot for serious improvement. However, once again, it’s a financial impossibility.

I feel like I need to make a quick rant on this because it is driving me crazy- it’s not possible to be sick/chronically ill and live off disability. You just can’t afford it all and expect to have any kind of life. It’s also not possible to get the medical care you need or deserve on it. Most of my medicines or treatment options are already a nightmare for a normal insured person to get- but without insurance, it’s a far fetched reality. Medicare or Medicaid are nearly impossible to get and they will fight hard to prevent you from getting ANY specialized treatments- their answer is “well there has to be another cheaper option”…

Back to IVIG. Outside of good insurance, we are talking 10’s of thousands of dollars PER treatment. Not even something we can dream of despite it’s serious potential. Living with rare diseases plus disability means that you cant just go to any doctor and say “yea sure send in the prescription or physical therapy or whatever, I can pay for it”. It means choosing which has the best possible benefit and trying not to be disappointed you weren’t able to always pick the best. It also means constantly hearing “I don’t believe X,Y,Z is possible” from medical professionals, realizing that no big organization is ever going to fund your cause because no one “important” has it, and also accepting that pharmaceutical companies won’t make medicine or research for you unless there’s a big payout, AKA a lot of money for funding the research OR they can charge a fortune and know people will pay (which they do anyways and go in to debt over).

So, it doesn’t change much besides one thing- my lovely MCAS and POTs are likely part of the trifecta, which means they all overlay and coincide to some degree and are usually a permanent part of your life. This also means that there still won’t be any new treatment options on the table or scans or tests that can be safely done without a Herculean effort from all parties. As much as we want to pursue treatments and final testing for CIRS- that involves a special MRI in which I CANNOT get sick and throw up during, I cannot have my port accessed (so no IV anti-nausea meds), and the treatments for it are an actual risk because nothing wants to stay down in my stomach. But back to the trifecta factors. There isn’t a cure, just management and lifestyle adjustments, AKA kinda what I was doing before my world imploded.

Almost 2 years ago to the day, my life completely changed and now here we are. I’m not better, I’m worse. Despite extremely strong efforts from a Neurochiropractor (who is a god send in every sense) for my Dysautonomia (also POTs falls under this umbrella but we’ve confirmed both are at play due to a larger autonomic dysfunction playing a role here), my infectious disease main doctor doing his best to manage my MCAS and trying to seek help for my new stomach problems, not much has changed. I literally got told to go see another doctor because my GI doctor didn’t want to be bothered with the complexity of my case. So now we wait to see if UNC is willing to help again. The narcolepsy symptoms are back (yay….) I lost most of my foods again (I lived off toast and water for a while, now it’s mainly toast, boosted pudding, water, and cream cheese…) and the vomiting cycles returned.

I’m not going to be too too much of a Debbie-downer (I can devote an entire novel to all that crap), but part of me dealing with all this is learning acceptance of things we can change and control, and things we can’t. I can’t control my genetics, only how I handle it. I can’t change or ever fully eradicate my MCAS but I can manage it. Dysautonomia and POTs can’t be cured, just managed and recovery to functionality is possible. I guess I need to approach it once again like I always have for CRPS. It’s always going to be with me but I just have to try and force it back in its box of remission and hope one day someone actually figures out a cure. Or maybe I will. If my brain ever gets back on track.

Stay strong my friends

Houston we have a problem.

Dear Station 19 writers, producer, directors, and creators,

I must have started this letter a few hundred times. Firstly, thank you for finally bringing up a rare disorder. Chronic Regional Pain Syndrome is rare and I’ve never seen a character portrayed with it before. Sullivan is an excellent character. Thank you for finally bringing it to light. However, we have a problem. I love that you are showing the debilitating pain and frustration of an invisible illness. I appreciate that you show the struggle of how to address a chronic condition that can ruin a career. But you are completely missing the point.

This magical surgery “Tom Koracick” promises is actually surgical sympathectomy, a RARELY USED AND VERY INEFFECTIVE treatment option. There is NO magical surgery to cure this. CRPS is CHRONIC, which means it does NOT go away. The STEM/TENSE machine is NOT a solution, it only mitigates some pain and most of us find little to no relief. It’s a MAJOR surgery (i.e. will likely worsen CRPS) to have a spinal stimulator implanted and even then there is a good chance it will not help forever. Every surgery is a risk of a major relapse or your condition spreading. It’s not a SOLUTION. It’s a life time of balancing side effects of medications and the side effects without medicine. Treatment options for CRPS are medications, physical therapy, aggressive desensitization therapy, sympathetic nerve blocks, stems, and, yes, occasionally a surgery. HOWEVER, CRPS is a phantom pain style syndrome. There is rarely an actual specific injury continuously sending signals, rather the nerves of the body send signals irregularly and without trigger or cause. Clothing and air blowing on the affected area cause crippling pain. I couldn’t even wear pants due to the never ending pain cloth against my skin caused me. Where is your portrayal of that? Where are the days, weeks, months, YEARS of begging for an answer as to why my body is suddenly crippled and I cannot function? Where is the debate between taking pain medications that are thrust upon us as a catch all,-don’t really know whats wrong -solution and the resulting decline in cognitive abilities? Where is the struggle to even get a prescription and the ridiculous offered alternatives like muscle relaxers? The only real struggle shown is the addiction to fentanyl which, side note, we CANNOT get prescriptions for and no doctor would immediately prescribe to a newly diagnosed patient.

Where is the attempt to use EVERY SINGLE ALTERNATIVE and finally an actual opioid medication only for it to stop working over time and leaving you in pain begging for a real solution? Let’s not forget the constant assumptions about chronic pain patients that we are all just pill poppers. We have to be registered and labeled as a pain patient before even being considered for a pain medicine. Anytime I go in to fill a prescription, let alone try and get a prescription for something else like root canals or broken bones, I get 20 questions about my usage and why I’m on these medicines. What you are portraying is only a TINY percentage of cases of us. WE ARE NOT DRUG SEEKERS. NO ONE wants to be placed on pain medication. We want answers and solutions not band aids. We do not seek out drugs to solve it. You are perpetuating a very wrong assumption that HURTS patients like me. We do not take medication to get out of pain. We take it to dull pain enough to attempt to get out of bed and function.

Your portrayal hurts people like me. Most of my generations first experience seeing medicine, diseases, doctors, police workers, firefighters, etc, was through TV. I watched House growing up and fell in love with medicine. I looked up each diagnosis to see if the symptoms were actually what they showed on the episode. But most people aren’t like me. They see something and accept that it’s the whole truth and something in its entirety. Alex Trebek discussed his cancer symptoms on TV and has helped so many people know what to look for with Pancreatic cancer and even allowed some people to get an early diagnosis. Patients like me eagerly seek out a character or even a celebrity who have our condition, especially with how rare it is, and can SPEAK out for us about how difficult and heartbreaking it can be. When you show someone having a condition but portray only a tiny portion of it or only the negatives, people get the wrong idea. We just started getting passed using “Bipolar” as only a negative description (a stigma I have lived with for over a decade as well) and here we are again with another negative portrayal. Don;t get me wrong, you aren’t the only one with a stigma issue. Dissociative Identity Disorder is in the worst shape and the media has some serious work to do to reverse the damage they have done to so many unique and strong individuals facing a very difficult circumstance they cannot control, but I digress.

Every episode I keep waiting and hoping that the few episodes “drug addict” stint will be moved past and we can actually see how difficult and CONSTANT his struggle with CRPS must be. Instead, I see it ignored and only randomly appear when it’s convenient for a dramatic moment. On the McGILL Pain Index, CRPS is considered the MOST painful chronic condition and the highest ranked condition of all. It sits WELL above unexpected childbirth and amputation (ask any woman during surprise labor and she can confirm it beats amputation). With a condition this painful, there is no way someone can just walk around, go to the gym, and act like nothing is happening during a flare. We are excellent as masking our pain, and even eventually learn to do things while being in pain. But for someone recently experiencing it (and some how magically being diagnosed immediately…) this hasn’t happened yet. Even if you fight through the pain and keep going, certain limitation begin to emerge. You gait is off, showers and towels are a problem, weightlifting is off kilter. Even with adrenaline pumping through your body, your nervous system can and will override that and set you into a spiral of screaming pain for hours.

Let me explain how CRPS actually works. According to the NIH, “CRPS is characterized by PROLONGED or EXCESSIVE pain and changes in skin color, temperature, and/or swelling in the affected area.” That’s where Chronic comes in. As in it goes on or is experienced longer than 6 months. You can’t just wake up and have CRPS. You wake up with pain and confusion as to why. There is no injury. No fall down the stairs. You attempt to go about life and you suddenly cannot. Your limb is cold, blue, swollen, and unresponsive to your movement but everything that brushes past it feels like a thousand needles. You isolate, elevate, and protect it and it worsens instead of improving because you stopped using it just so the pain would cease some. At this point you might actually be seeing a doctor who likely has NEVER heard of CRPS. They send you for every scan, blood draw, and test there is. You get shoved off into physical therapy and told it’s in your head. At some point, months to years down the line, you finally hear about CRPS or someone mentions it. By now, if it has been long enough you may have whats called type 3, in which there are irreversible changes to the bone or limb and you cannot have a full recovery or it may have spread to more of your body, affecting your back, neck, or other limbs. You start medications. You are considered a chronic pain patient and your pain medicine that was the only thing keeping you going is put into question. You see, pain doctors usually refuse to prescribe pain medicines to anyone who has chronic pain because it means you’ll be on it forever and you’ll likely need higher and higher doses until you no longer can use pain medicines (WHICH IS A VERY VERY BAD THING). You are offered nerve pain medicines like Gabapentine or Lyrica (both of which can have long term memory loss, kidney toxicity, and cardiovascular failure). You’re handed anticonvulsants which can cause more psychological symptoms, send you into suicidal depression, give you allergic reactions, or hundreds of other side effects. And you’re told to say good bye to your old life. Grieve for it and move on.

That’s my reality. Now I’m not trying to be a Debbie Downer here, I am not saying all hope is lost. I’m just facing reality. I will improve over time and I could get back to some real “living” but I will always have limitations. I can’t just decide I want to go rock climbing or sky diving tomorrow because that sounds like fun and I’m in my 20s. I can’t just decide on a whim to crash at a friends house or stay out all night having fun- I have to go home to take all my medications and WATCH OUT don’t mix any of them with alcohol. Did I eat enough with the medicine or does it have to be taken on an empty stomach? Do I have back up medicine? Did I get a refill on time? I have to be aware, careful, and basically paranoid.

So, Station 19, I ask you, where is all that? Where is the reality that MOST of the CRPS population face? Instead of taking a well developed character with an interesting situation and showing us how he could overcome through therapy and hard work and medical intervention you’ve made him into a “hot topic” issue of drug abuse and made THAT the central point. Where is his conversation with his new wife of how things will be difficult because of this condition? That one day she may have to fully take care of him well before he should be geriatric care? Where is his conversation with his doctor or therapist about how he can overcome this or what his options are? Where are the countless, tear filled night of feeling so completely alone and burning in pain you would rather just die? Where is the checking off of every single box when they ask what type of pain you have and the registering nurse looking at you like you must be an addict or nuts? (Yes, this has really happened. You get a lot of questions when you have both dull throbbing pain and sharp electric pain) Where are the medication side effects you struggle to hide like memory loss, weight gain, irritation, vomiting etc.? Instead it’s all about his drug use and how that makes him a risk and danger to other people, not that is situation is cause by a REAL AND HORRIFIC LIFE LONG condition that will never disappear. You can’t just make him magically healed next season. You can’t just throw him into a burning building and have the affected limb fall off and he’s healed because his leg is gone.

Station 19, I need you to get it together for me. For us. I need you to make this character the pubic face of CRPS hope because most of us can’t even get out of bed to be that face. I need you to take a step back and evaluate your portrayal. I need you to raise awareness. The only orphan drug trial has been halted and there is almost zero chance we are going to get another treatment option unless someone puts this on blast. So for me, for the generation above me who never got help, for the undiagnosed people who lost the fight because it became too much or their bodies couldn’t take it anymore, for the children below me who could have a chance at recovery, and for the rest of the world that needs to gain some understanding, please, fix this.

-Jessie ~Living a Life on Fire

Well it’s started up again. Last time I discovered the horrendous experiences of withdrawal while coming off of a central nervous system muscle relaxer that was causing breath suppression and other problems. This time I am coming off an anti-depressant (SSRI) I have been on for over 10 years. Guess what? It’s even worse.

Let me back up some. When I was 14 I started to develop psychological issues that eventually manifested into depression and anxiety and culminated with a full on mental break down. I got handed a couple bottles of pills, sent to therapy, and told “surprise, you’re bipolar and depressed and maybe a little psychotic..whooo”. After many years of therapy, bad and good psychiatrists, diet changes, and the prompt removal of one very nasty medication (Risperadol is literally THE WORST DRUG OUT THER), I’ve managed to stay relatively stable for 5 years. I learned to control my anxiety and panic attacks, discovered how to discern between chemical and situation depression, and even found ways to combat the molecular deficiencies my body had. I was ready to come off the medications and see how I was going to do… NOPE. Jellyfish attack put that all on the back burner.

Yet we have discovered something new. Last year my new doctor, who is handling my current conditions and cases, mentioned he believes my newly acquired POTS may not be genetic, but actually a side effect of the drug interaction between Lexparo and my other medications. It’s also a well documented side effect. Fun fact: you can develop any side effect or reaction to a medication at any time after you begin taking it (in 2 day or 2 months or 2 years). Surprise surprise, Lexapro could be the source or a factor in my POTS.

Now on top of POTS I have Dysautonomia. Essentially this means that my body cannot maintain homeostasis and the signals are all wrong. Think mini strokes without brain death and the capability to be reversed (More on this another day). POTS in it of it’s self can exist on its own but it usually has something causing or triggering it. While the trifecta of conditions, MCAS, POTS and EDS(Ehlers-Danos syndrome- which I may or may not have, we just can’t test right now) is very common, there are many things that can trigger them to be more severe. In my case, I faint after standing or sitting up right for more than 10 seconds. If we can treat the Dysautonomia and eliminated the Lexapro, I may have a significant improvement in my POTS and instead only faint if I were to stand up very quickly.

So, back in November we began to titrate me off Lexapro. We were relatively easily able to drop from 5mg to 2.5mg. I’ve been on 5 mg for years (it’s basically a children’s dose) and I did pretty well at first. Suddenly. I wasn’t okay. I had Gastroporesis again. i was vomiting up everything. We ended up having my Lexapro compounded into a liquid so it would stay down better and we could control the amount easier. I started having tremors and shaking again as well. We went back up again to 3.75 mg and waited it out. Then I began to do some digging into why this was such an issue again. And there it was. A collection of research explaining that SSRI withdrawal is worse than quitting heroin cold turkey. The withdrawal can last for months to years after the last dose. And, of course, the top 4 hardest medicines to come off included Lexapro.

2.5mg is the witching hour. Most people seemed to be able to get to that point but after that, everything seemed to go wrong. When we tried to titrate me down even slower (instead of dropping .1mg every day or so we tried it every 5 days. Suddenly I’m seizing, spasming, sick as can be, and having strange reactions again. My hearts palpitating constantly, my blood pressure has sky rocketed into the 180s and above, I can’t sleep, and I can’t function again. So back up we went again to try and stabilize me.

But why is this happening? Well, like any drug Lexapro has a half life, which is the time it takes for the medicines potency in the body to be reduced by half (so 5mg to 2.5 mg). Lexapro’s half life is around 8-16 hours depending on the person. So essentially, at the 96 hour mark, most of the original amount has been depleted in the point-something percent range and it’s caught up to your body. That’s why I was having what looked like delayed reactions. When you give back the body what it’s craving, it’s not instantaneous like an opioid, it takes time to work.

Another factor to consider is that fact the SSRI’s are selective serotonin re-uptake inhibitors. Basically they keep the serotonin molecules bouncing around and sending signals into your neural synapse longer than they normally would because your body doesn’t naturally produce enough to send the right amount of signals. Over time, your body gets lazy and begins to rely on this medicine to extend the life of your serotonin NTs (neurotransmitters) and produces less and less. As a result, when you take away that helper, you now don’t have enough produced to regulate normal functions let alone enough to keep you feeling happy and not anxious. Serotonin is a powerful neurotransmitter that does a lot more than keep you feeling good.

So back to my adventure. We went back to 2.5mg and stayed there for a month while I dug into research as to why the hell I was having such a hard time. I wasn’t having all the invasive thoughts or depression, just physiological problems. Eventually we started again. The recommendation from one fo the leading researchers on Lexapro and it;s dangerous side effects (As well as the withdrawal issues) suggests a 2%-5% decrease every 2 weeks or so to allow your body to adjust. The longer you’ve been on the drug, the harder it is to come off. What;s really interesting is that doctors actually have ZERO idea how to get people off this drug. My pain doctor wanted to put me on a medicine they use for opioid withdrawal. Of course I couldn’t take it because it interacted with every single medicine I was on. Some medical professions have recommended taking a pill every other day, lowering the dose by half for 3 days then stopping, titrating down by 1/4 over 3 weeks then stopping, the list goes on and on. Unfortunately, there are NO medical doctors whose sole job is to work with patients in withdrawal for anything OTHER THAN OPIODS OR HARD DRUGS. No one really studied how to get people OFF the drugs they started them on. Even the drug trials don’t discuss that. So your choice is really stay on the drug forever and hope you don’t get side effects or hope you can come off of it with zero problems. Not really a good solution in my book.

But back to my current conundrum. I’ve managed to restart titration again at a much slower pace. We have gone back to slow drops over a few days and will continue to do so until I hit the 1mg mark. So far, besides the Gastroporesis, I haven’t developed anything new or seen the return of my spasms and tremors. So let’s just hope it STAYS this way until I can finally come off this damn drug.

The corona virus 19 is on the top of everyone’s minds. With a high spread rate, long incubation time, and complications, many people have become ill and panic has set in. Despite the legitimate concerns, I am not panicked, nor am I afraid. I am only concerned. But why?

First, I am already on home isolation anyway. My parents do not have to work in the general public with regularity and I cannot go anywhere anyway. We do not eat out as everything I eat has to be freshly made and very specific. While there are concerns about availability of specialized items, as the top priority foods and products will overtake orders and shipments of specialized items, such as milk and breads, we have taken steps to pick up some extras of my special products. Luckily, my foods are so out there that I doubt buying up lentil pasta or baby Gouda is at the forefront of everyone’s minds.

While there is an issue with everyone over purchasing cleaning supplies and leaving none for those of us who require them for daily use (I have to sterilize my IV supplies and set up area every time). We have extra wipes and save those exclusively for my port related procedures but not enough forever. This does create a problem in the future though. I can only tolerate very specific products to clean around me which means that we cannot just go out and buy any old product that’s out there. So there is a legitimate concern. However, I am not in dire straits and am confident that we will be okay.

Secondly, even though I am concerned about the lack of face masks, primarily because spring pollen and rain cause mold and other inflammation in my body, I am not panicking as I just have to avoid going outside…which I already do. I do wish people would have researched the actual proper mask usage and sizing before buying everything as it has created a serious shortage for medical workers. We require sterile, fresh face masks each time my port is accessed, which is weekly. This means at least 3 new masks must be available each week JUST FOR ME. Now imagine the concern of patients on chemo (which many masties [mast cell diseases patients] are on).

Third, I already can’t go to the ER so exposure risks there are kinda null for me. Without proper procedures set in place, this can create issues for patients who need to go into the ER for accidents, broken bones, heart attacks, etc, if there is overflow from patients who may have the virus and need to be tested. Unfortunately, I have yet to see a plan in place regarding where potentially infected patients need to go vs. the general public for other issues. Also a concern is that there is no division for high risk patients (i.e. those without immune systems, elderly, and those on immunosuppresents or with cardiovascular diseases) from the generally healthy population. This is one thing I do hope that the CDC and medical professionals will weigh in on and take appropriate actions.

Fourth, based on the current data, the younger populations and those without cardiovascular conditions seems to be dealing with the virus much better than those who are older or have those kinds of conditions. Now this is a double edged sword. With this mentality, many people think that ONLY people with those specific conditions or parameters are at risk and not those with other diseases or chronic conditions that can complicate things.

Current novel research has been reviewed by independent Mast Cell Disease doctors who have a concern regarding patients with Mast Cell Related Diseases. The current research indicated that this specific coronavirus (remember that there are many other coronaviruses out there already that do not cause these specific symptoms or spread in the same way but can cause similar issues) activates mast cells in the body. Now, there is currently no data on any Mast Cell Disease patient getting the virus and what happened, but the theory is that it could cause an inflammatory mast cell storm. Here is where the concern part comes into play. This kind of “storm” could cause my symptoms and severe reactions to things to return, severe inflammation, and current medication regimes no logner being effective. This means that many mastie patients would be in danger of constant anaphylaxis as well as heightened sensitivity and reactions. Most typical medication options are not actual options for these patients so treatment becomes a concern. While most mastie patients in the groups I belong to are taken extra precautions, there is still a legitimate concern that the infection could cause unusual complications. OR MAYBE NOT. It’s also possible that patients with too many mast cells (mastocytosis) who are NOT currently on an immunosuppresent to treat [a very common chemo style treatment that makes these patients VULNERABLE to any and all infections, viruses, and colds] could actually easily fight off the virus. But we just don’t know, and no one wants to sign up and be a test subject.

So what does that mean for me? Well it means we have to be EXTRA cautious in regards to how we would approach a theoretical infection for me. A typical hospital setting may not be able to care for me already specific issues and this on top of it would complicate things further. However, we have excellent doctors in this country. I have a superb doctor on my case who actually in an infectious disease specialist who I trust whole-heartedly to be involved in my case and to make the right choices for me.

BUT, we have another issue. This virus is interrupting the normal medical functions, which means that my plans for future tests and scans, new treatments, and new medical appointments have to go on hold. For many patients with chronic conditions, this kind of outbreak interrupts us being able to get diagnoses, treatments, and even tests to confirm or deny our conditions. Newer and experimental treatment options are off the table and any progress forward will be on my own without any additional medical treatments. Additionally, the panic purchases have put certain NEEDED over the counter medicines in short supply. I have to use liquid Tylenol and liquid Benadryl as I cannot take anything else and these two are essential in controlling my reactions. As a result of all the panic, the disease interfering with normal production, and international import concerns, many of these types of medicines may end up in short supply. Fortunately, I have a port. Which means the IV option of Bendaryl could be ordered for me and Tylenol could me compounded into a suppository. So there are alternative, but more expensive, options.

So what kind of recommendations are there to be extra cautious for patients like me? First and for most is to make sure to wash your hands and not touch your face, mouth and eyes especially. Avoid touching commonly touched objects or clean your hands immediately after. Things like door knobs, money, and gas pumps are big ones to think about. An immunologist for a friends children with a complete lack of immune system (meaning their body could not fight this off if they got it and would be critical immediately) recommends taking off the outer layer of clothing and showering immediately upon returning from public spaces. This can be further helped if you were to wear a vinyl raincoat (especially because the RAIN NEVER ENDS HERE) as they can be sprayed off with disinfectant easily and the surface does not absorb moisture molecules. Wipe down any products that may have germs on them before bringing into your home (cereal boxes, chip bags etc.). Avoid crowded, highly populated areas as much as possible and be aware of yourself in these spaces. If you were to get this, avoid animals as coronaviruses pass between humans and animals. Contact health resources or doctors at the first signs of infection or if you believe you have been exposed. Now this last one is an issue because there is not a lot of resources in place yet. If we were to follow South Korea’s example of drive through testing [which I think is an EXCELLENT idea] we may be able to handle this better.

Here’s the thing, this virus spreads very easily but is not considered extremely deadly as most people handle it with supportive care. Those with complications will need serious support and immediate care. Remaining calm and taking preventative measures is key. Resist the urge to panic purchase things. Make wise decisions and stay safe.

The bigger issues I feel I need to address is the rampant amount of racism and prejudice that has occurred as a result of this disease. It’s disgusting. I don’t care what your excuse is, but blaming Chinese people or Asians in general and making rude comments about what they eat is wrong and absolutely disgraceful. We eat pork. In Islam that is considered disgusting and unclean. I have never had a Muslim walk up to me and state that my eating of bacon is why people get sick or that is makes me a bad person or anything else. I’ve worked in food service for years and have had lovely interactions with people of every nationality and religion and spoken to them regarding their dietary concerns or needs. Never once have I had someone who is Jewish and follows kosher harass me or blame me for the use of non kosher meats or the use of dairy and meat together. Why does this virus give ANYONE the right to be judgmental?

I was fortunate enough to live in China, Xi’an specifically, for one month. I got to travel to many cities and regions and experience local culture and foods. I saw the difference in the ways people prepare food. Much like in Europe, people prefer to buy fresh/daily products and cook or use immediately. As a result, there are little preservatives in foods as they can be bought from your local farmer daily. The foods and ingredients vary from ours based on what can be grown locally and what has been eaten for centuries. As an outsider and visitor, I have NO RIGHT to pass judgement on to what people eat in other countries. I may decide to try some or I may not. People love to tout their experiences with “local cuisine” “local delicacies” “cultural experiences” but are all to quick to pass judgement when something is too unusual. We have unusual customs here in the US. We eat more meat than most people around the world and combine things that many may find disgusting or improper in their own perspectives. Judging someone else based on their culture is just as bad as blatantly making a racist statement. The people of Wuhan and of China did not intentional go and give themselves a virus just to pass on to others. They did not make someone eat their food only to make them sick. So what excuse is there for making blanket statements blaming the Chinese for this?

You may not know this but I got sick while I was abroad in China, multiple times actually. I ended up with something that’s very common called “contamination”, basically E. Coli here. This was during a shared meal with others from my school group while we were enjoying crayfish caught locally. Unfortunately, I ended up getting sick and was vomiting and loosing fluids left and right. I went to the local hospital with my teach for tests and medicine. The experience was COMPLETELY different than my previous experiences in US hospitals (and even when I was in Switzerland and got sick…) and my experience in a Traditional Chinese Medicine Hospital. You enter (if you haven’t come by ambulance which is pretty rare) and buy a ticket to see the triage doctor. They listen to symptoms and check you for basics like fever, pain, discolorations, etc. You are given a list of tests which to take up to the locations and pay to have them run. You get a number, type it in 30 minutes later, print your results from the kiosk, and go back to the triage doctor. Then they write a prescription or decide what needs to be done. There’s a room for people who are okay but need IV’s while waiting. I got my medicine from the pharmacy on site and left within 2 hours. This is completely different than what would have happened in the US. Does it make it wrong? Absolutely not, it’s the way they choose to run things. While it may seem harsh to require payment up front, its not expensive, only a few American dollars total for the entire tests and visit and medicine was around $10. Additionally, most medications are over the counter and can be purchased at a pharmacy, including antibiotics and most cold medicines. I didn’t see patient rooms so I cannot speak to that experience but from what I saw, it was crowded and congested and I can see how the hospitals could easily be overwhelmed.

Unfortunately, the antibiotics I was given were not strong enough and I needed further treatment when I arrived home. That’s mostly because I have had to be on so many and the US uses much strong antibiotics for those kinds of infections here versus in other countries. Do I blame the doctors, or the host who fed me what made me sick? Absolutely not. They did everything the way that they would handle it in their country. My system just didn’t match up to what they could provide. I made the choice to enjoy local food (which we also eat here in the US) and unfortunately things didn’t work out for me.

Back to the issue at hand. I can only commend the people of China for following through with the restrictions, remaining calm, and doing the best they can amid this crisis. I cannot tell you how incredible the men and women helping care for those who are sick are. Instead of sitting around and pointing fingers, blaming the foods people eat, the way they live, or even their cultures, let’s look at actual facts. Other coronaviruses have come from other countries. Other diseases have sprung up from foods (remember the lettuce E. coli outbreak last year? or the meat contamination?). You cannot just point fingers. This is not WWII with internment camps. While the Chinese government has done wrong, especially to the whistle blowers and medical professionals trying to alert people to this disease, this doesn’t mean you get to blame the people who live there. This is the time to unite as a globe. We cannot go anywhere else. No one is moving to the moon. This is a wake up call that we as a globe are not prepared for any kind of outbreak. We laugh at the Zombie apocalypse concept but we have nothing in place for real life outbreak. Now is the time to unite, not divide.

Since it’s rare diseases week (yes a whole week, we deserve it y’all), I figured it was time to post some thoughts.

Having a Rare disease (or a few in my case) means doctor shopping isn’t just looking for someone to take your insurance. It’s finding a doctor whose even heard of your conditions and then might be willing to take on the chronic challenge. It’s lots of no’s, and “this should be working but not on you I guess”. It’s guinea pig testing and deciding between living and being miserable or living with dozens of side effects from medications and then choosing if you need more medications to fix the damage from the medicines keeping you alive and sort of functional. It’s realizing that you’ve never felt so alone and trying to decide if it’s worth the expenditure to try and reach out only to be too exhausted to follow through. It’s slogging through a decades worth of medical files to find a diagnosis and then not even being sure it’s right. It’s spending night and days endlessly searching through every article or paper ever published even mentioning your diseases for hope and treatments. It’s people giving you strange looks and not really understanding what’s wrong. Or even doctors just not believing you and claiming it’s in your head. It’s a lot of well meaning but ultimately useless advice (sometimes unsolicited and sometimes out of the love of those around you) regarding magic juice cleanses, herbal supplements, special oils, and miraculously “healing” yoga. It’s really, really wishing that those options were both feasible and workable. It’s being driven crazy because you’re not quite sick enough for the interventions you need but not healthy enough for the alternative options. It’s a lot of balance.

But what about getting one later in life? It’s so different to be born with something that effects you from day one and thus you grow and adapt and adjust your entire life than being born with a problem that only manifested when something specific triggered it and suddenly having to erase your entire normal and watch the basics you took for granted as normal things fade away. Driving, a grocery store trip, a job, all of it. It’s looking ahead and realizing there isn’t a clear path or even a road map to help you get back to where you want to be. It’s mourning a loss you never through existed and realizing that now spending a day actually alert and aware is the primary goal. It’s seeking support from those who were born with it and impacted from day one and just hoping you can be as adaptable as they are. It’s desperately trying to not show your fear of decline and putting on a brave face for everyone around you. It’s making concessions, adaptions, and sacrifices in the name of safety, ease, and hopefully comfort. It’s also heart wrenching. It’s watching someone you love be forced to walk this journey with you and witness your declines. It’s hoping you can have one day where it’s just not as bad and that they too can rest.

Rare diseases also drive you. They make you want to fight for a better tomorrow. They drive you, define you, but don’t defeat you. By defining I mean determining certain aspects of your life but not who you are. It means you must be aware of your surroundings, your interactions, your lifestyle, food intake, locations, and other needs. It means you must always be fully prepared, carry information, and understand the risks no one else must think of. But it also means you are an educator, and advocate by nature. You have to fight for yourself to receive the right care and inadvertently you are educating others so that they might use your experience to help someone else.

Rare diseases shouldn’t limit you, shouldn’t define what you can and cannot do, but they like to get in the way. As horrible as it sounds, I almost wish more people had it so it wasn’t rare anymore and more people understood. But unless someone with money or who is famous gets or has it, no one really ever hears about a rare disease. I want to change that. I want to search for information about a rare disease and see others stories who have it. I want to be able to remove the notion that rare means incurable, untreatable, or unacknowledged. Instead it should be understood, respected, and well cared for. I want it to be about success over lack of information, hope over despair, and most of all, open mindedness. I can only hope that one day we no longer have a need to advocate for rare diseases and instead can just share all our successes. That rare no longer means a lack of information, instead it means unusual but manageable.

I figured it was high time I mentioned some of the funny things the world seems to imagine and come up with about chronic patients. Trust me, I can totally see where some of these are coming from.

• You must be on drugs! – well technically I am, but most of them just keep me alive. Hell, between the INSANE number of blood draws (I’m talking like weekly ones during the last 15 months trying to figure out what is wrong), the B12 shots, IV’s, needles everywhere for shots and bag injections, yes, I probably look like I do a lot of IV drugs to the outside world. And unsurprisingly, I have virtually no veins on my arms to draw blood from anymore (minus my thumb but NEVER EVER let them pull 6 vials from there unless it’s life and death because it hurts like hell and takes forever).
• You are just lazy and want to live off disability! – well laying around stuck in bed or the couch all day is the image of laziness, however, if I could get up and make myself a cup of broth, go on a walk, drive myself somewhere, even stand up without passing out, I WOULD BE. Also, as a general note, if you are truly sick, truly disabled, it is almost impossible to live off disability alone. I finally qualified and it won’t even cover my basics. Between doctors visits, medications, tests, previous bills, food costs, travel, living expenses, etc it is NOT possible. I’ve done the math, there is no way without my parents stepping in that I could survive. AND you have to have NOTHING in order to get Medicaid (health insurance for poverty line/other circumstances). So the fact I tried adulting and made an IRA but apparently, I can’t have that and be sick.
• You can just get over it, believing you are better will cure you! – Okay, nothing against the power of prayer and belief, but if that worked, we wouldn’t even be here in the first place. That is how I managed to keep working for so long. I really tried to believe I wasn’t hurting, wasn’t sick, this was all in my head (which NO ONE EVER WANTS TO HEAR- I’ll speak on that later) but somehow, when symptoms keeps coming, getting worse, and you can feel yourself deteriorating, it doesn’t work like that.
• It’s all in your head, therapy fixes all- I am in therapy, I have been for a decade for other things, I am pretty sure I KNOW the difference between in my head and not in my head. As a side note- most chronically ill people ARE on some kind of medication for mental health any way due to situational depression, brain fog, other MAOI/SSRI for other symptoms.
• If you’re so sick, then why did you come to (insert event, occasion, gathering, special thing here)? – Well wouldn’t you push through a cold to come? When the illness never ends, then if you followed the whole “if you’re sick/don’t feel well/too tired/concerned about the event you can stay home and miss this ONE thing” you would never leave. To try and rationalize my decision that way is unfair. I already know that just getting up, dressed, and out of the house will take its toll on me. I know that just getting up, dressed, and out of the house will take its toll on me. I know that tomorrow when I wake up I won’t feel well. I am sure my symptoms will be terrible by the end of the night or tomorrow. But I WANT to be here, and I enjoy the option of being able to go
• Aren’t you tired of being sick? -YES. I AM. I would very much not to just have the “sick person” label.
• Can’t you just try (insert food/drink item here)? One bite isn’t going to hurt you.- I so wish that was true. With Gastroporesis and my Mast Cell mitigated responses it actually could. I want all those delicious holiday treats, yummy snacks, tasty beers and holiday drinks SO BADLY. It’s already difficult to not be able to make or enjoy them but please don’t remind me. I completely understand where people come from and, being a southern lady myself, I constantly want to feed people too. However, my stomach has decided that it no longer likes ANYTHING even remotely new, different, or actually tasty. (I have been living off lentil chips and lentil pasta for a few months now- and by living off I mean 80-90 % of my daily consumption it one or both of those items- think maybe a cup of food a day for reference). It’s annoying me too…
• You’re just picky about food, want to loose weight, have some sort of eating disorder, etc.- I so wish this was true. I would much rather go through dealing with my EDNOS than this any day. It’s common for people with stomach problems to get a bad rep of being finicky about foods or appear to have an eating disorder. Having experienced both I can shed a little light here. I hold no fears about food. I am concerned about items I haven’t had in a while (or even foods I ate yesterday, the day before, this morning, 20 minutes ago) because my body can decide, just like a toddler, it doesn’t want that anymore. [chicken nuggets they asked for, chicken nuggets they got, chicken nuggets the toddler suddenly doesn’t want anymore and it’s nuclear melt down time]. I WANT that salad, a pizza, a cookie, and I WANT it to stay down. The mentality I held about food during my experience with an eating disorder was very different…I didn’t want to eat, or I felt guilty when I ate. Now, I am excited to eat and more desperate to keep it down than anything. And yes I am VERY tired of throwing up everything and it being the ONLY thing my lack-of-smelling nose will pick up. So please, before you jump to a conclusion about food and start assigning your own diagnosis to people , ASK (this has to be my biggest pet peeve I hear about)
• Are you done being sick yet? Aren’t you tired of trying to get attention and be the center of attention?- I so wish this was a thing. Yes, I was done with being sick 14 1/2months ago (aka 2 weeks into this hell trip). I don’t want attention, honestly I just want people to understand and learn. I want people to ask questions and be curious. I wish they actually would. I don’t want attention for this at all. What I want is an answer. So this is on the forefront of my mind constantly and it will continue to be until someone can give me an answer and a treatment plan that will actually work. It may seem annoying, self centered, or down right bothersome for someone to constantly be talking about their conditions and the difficulties they face, but it is in the hope that one day something will click and it will lead to an answer. I am focused on this because I want to use my personal experience to treat people in the future. My only hope is we all can begin to open our minds to what other people are going through and start to understand how to work through it with them.

So that’s the end of my rant. Some funny, some not so funny. I’ve become a bit cynical about the whole thing and often these assumptions are actually ones that my own mind tells me people must be thinking (I have a lot of free time as you can tell). But honestly, I’ve had these kinda of thoughts pass in my mind before too. And it wasn’t as kind or understanding of a thought as it should be. So let’s be open about it. And let’s be a little bit funny.

As a side note- There is a secret gift giver out there who has sent me the sweetest little surprises and it has MADE my week for the past few months. We have no idea who you are- but thank you, you’ve made a very upset and tired girl very happy.

Well since I am writing this, yes, yes I did survive. But how? Well that’s a tale that involved a lot of compromise, desperation, and gravy.

Basically, we started trying to take me off Lexapro (anti-depressant of 11 years) about a month ago. Unfortunately, Lexapro is one of the top 4, most difficult drugs to come off of in the anti-depressant category. it’s is partially due to the way SSRI’s work and create a dependency on this drugs mechanism for your brain to feel “happy” and partially because I’ve been on it for over a decade, plus it’s got a long half life. So here we go again, withdrawal, part 2, round 3. But I’ll save that for another post when I get further along in coming off it.

I lost most of my safe foods again, tremors and shakes in the mornings, non-24 sleep cycle (insomnia and sleeping during the day), POTS flare ups, and vomiting. All the vomiting. And it’s not even real nausea. It’s visceral. Okay think of it like this- if you HATE oysters and have tried to eat one, then you’ll totally get this, if not, imagine applesauce and milk…It’s like eating something and the MINUTE it hits your stomach or throat your stomach screeches “AW HELL NAW” and drop-kicks it back up your esophagus and out. [it’s a pretty funny image…]. Regardless, my stomach now rejects random things, anything too hot, cold, in there too long, didn’t eat soon enough, waking up, moving around, sneezing, or it just decides, “NOPE NOT TODAY SUCKER”- and out everything comes. This means I’m up to 7 day a week Iv fluids and I’ve been trapped on the couch downstairs for going on 3 weeks (with my weakness, fainting, and sky-high-now-super-low blood pressure it’s a dangerous endeavor).

Okay so back to Thanksgiving. Last year my mom and I headed up to KY to see the family the week before actual Thanksgiving for our family reunion, Xmas, Thanksgiving adventure. Unfortunately, last year, this was when I was in horrible pain from my sting, on a myriad of drugs including Lyrica, which wipes your memory, and a new anti-convulsant called Zonisamide (YES THE SULFA DRUG THAT GAVE ME ANAPHYLAXIS NOT BUT 2 DAYS AFTER I GOT HOME). I could eat, but I was in a ton of pain and pretty miserable. I did however, make my awesome mashed tatters and chess pie.

So anyway, this year we stayed here. I can barely travel to the doctors as it is. We agreed on roasting a chicken (no turkey for me..) so we can use the bones for stock as well, Peas, tatters, stuffing, and gravy. I really wanted to help, but that wasn’t going to happen so THREE days prior I made the chess pie, with my dads help, while in my wheelchair, trying not to pass out. I did it! Sorta, I mean, everyone had to help on this one. Somehow, the night before, with Nick’s help, I made bread rolls to rise overnight. Except I started puking mid mixing (thank god for a auto mixer) and had to abandon ship. Good news? I survived and the rolls were unharmed. Bad news? I over mixed the damn things.

Thanksgiving morning (AKA 1pm in my world) I had the delight of puking my guts up. But by the evening, I was much better off and managed to even stuff the chicken with help. So I got a WHOLE TABLESPOON OF PEAS, and 2 oz of chicken, AND a 1/4 cup of tatters. Plus a dash of gravy and stuffing. That’s the most food I’ve eaten in a month. Add in a lot of my THC butter to keep my stomach calm and somehow, by a Thanksgiving miracle, it all stayed down. Even a bite my chess pie. (Probably because I took a nice long nap after eating)

But this all goes back to something a lot of my groups discuss. Family at holidays and holidays in general. For anyone with an allergy or who is chronically ill, it’s a mine field. You WANT to go be with friends and family but it’s a danger because who knows what goes in the food and sometimes you just can’t even get up. And you can make your own dish and bring it, but some people are extremely sensitive to certain smells or allergic reactions so just being there is rough. Some families can be super accommodating, others not so much. If you’re having a hard time imagining, think about people with peanut allergies (contact allergies, the most severe, if it’s in the air, they are at risk) as what could actually be going on, but the individual presents as if it’s Celiac’s (definitely a terrible condition, any trace amount in some can cause GUT WRENCHING pain for days after but not necessarily a traditional “anaphylactic, nut allergy” reaction) and somehow everyone seems to view it as they magically decided to become a vegan yesterday. I think you get the image. I know how hard and frustrating it can be to try and accommodate someone with such “strange” reactions or risks,but it’s the thought that counts. Don’t leave people out just because it could be harder.

In college I was stuck on a gluten free, dairy free, egg free, no red meat, diet due to suspected allergies. I went to my aunts of Thanksgiving and made my own Potatoes that I knew I could eat. I even offered to help make some of the meal or bring more things so I would know what was safe. And even if I couldn’t come because I was sick or unwell, it is the fact they asked and offered. They didn’t need to understand or get it, just listen. And at the end of the day, that is all we ask.

This year for Halloween, my mom once again got alternatives to candy. We registered for the Teal pumpkin project as well. The project was started as a way for other people to offer candy alternatives for kinds who cannot have candy, certain candies, or food products at all. (When I was a kid this only could happen if a mom when to the neighbors ahead of time and gave them something else to give the child) Instead, we actually can offer those kids a chance to go out and join their friends. If we can do this for children and strangers, we should be able to be just as open and kind for our family and friends during ALL holiday events.

So yes, I did survive Thanksgiving thanks to my wonderful parents, and a lot of pre-medicating.