#basically none of my doctors have taken me seriously when i mention pots

[boxheadpaint]

[experiences symptom] huh maybe this is abnormal. lets look it up [its pots again]

[cannabisrefugee-esq]

The last day of my life was sometime in February, 2013 the day before I was first diagnosed with Crohn’s disease, a progressive and incurable automimmune disease that targets the digestive tract.  As many people with Crohn’s probably know, and as none of us is allowed to think or say out loud, your life is essentially over once you get a Crohn’s diagnosis.  If not from the disease itself then from the treatments.

The disease itself is absolutely horrific and I saw it in my doctor’s eyes when she first broke the news and many times thereafter.  The first doctor in the practice to meet with me, right after diagnosing me said, “You need to get insurance immediately, if not sooner.”  I naively asked if that was because most Crohn’s patients needed surgery; she said no.  I didn’t understand what she meant but I was at the very beginning of my Crohn’s journey and just made a note of it.  I could tell that something was seriously wrong and about to get worse.  I mean, obviously.  If surgery and even repeated surgeries isn’t the worst thing in my future as a Crohn’s patient then what is?  I was already queasy from the Crohn’s related nausea but what she was saying, and not saying, unsettled me.

The second doctor in the practice to meet with me said, “You are an attorney, you are educated, intelligent and have research skills.  You should research this disease and all the treatments available to you.”  I didn’t know what he meant. After meeting with him for several follow-up appointments, when we had developed what I felt was a mutual professional respect, I considered telling him I would be at Starbucks later that evening if there was something he needed to tell me away from the office and away from prying eyes.  What did he mean and why couldn’t he just tell me about all the available treatments himself?  At the time, the research I had done indicated that the conventional treatments for Crohn’s don’t work much; that Crohn’s patients have an extremely low quality of life; and the best “alternative” treatment available was a so-called elemental diet, an enteric feed called Vivonex, a sickly looking yellow fluid that’s meant to be taken through a feeding tube but you can drink it straight if you can stomach it.  I bought several months’ worth at about a thousand dollars a month and tried my best.  It didn’t work.  And despite also taking the prescribed treatments including Pentasa, Entocort and Prednisone, I was getting steadily worse.

I was reading online Crohn’s forums and reading about patients who had been living with Crohn’s disease for decades, as well as the recently diagnosed, and the absolute hell they had been going through with medications, procedures and repeated surgeries that did nothing but make them feel worse in the end.  No pun intended.  Some people found success with different treatments only to find their effectiveness short-lived.  Normally I would concede that those patients who were satisfied with their treatments and with their quality of life would be out living their lives and not commiserating on an online forum, and therefore I would take the published accounts with a grain of salt.  But in this case I noticed a pattern: many of the patients writing on the forums had been getting some relief from their treatments for a time but the treatments eventually failed.  What I was reading were both the treatment failures and the treatment successes in that sense.  Where are the Crohn’s patients who respond well to the treatments forever and don’t feel traumatized, stigmatized, disabled, or have other reasons to publicly talk about it?  I have no idea.  I have never met one.  I understand that they are probably out there somewhere but the truth is, even they won’t know what group they themselves fall into until they die.  Just because they are getting relief from their symptoms right now means nothing.

Eventually, I fell down the rabbit hole of researching medical cannabis for various conditions, including Crohn’s.  Is this what my second doctor had been referring to when he told me to research what was out there?  Cannabis was still illegal in my home state, not to mention outside the “official” accepted standard of care for Crohn’s, so that could’ve easily been what he meant and he just couldn’t legally say it. After reading and viewing hundreds of blog posts, medical journal articles, and YouTube videos on cannabis and Crohn’s, I suspected it was.  I had been treating with prescription medications for 2 years and was feeling my health, energy and life slipping away.  I was getting worse and at a terrifying pace.  I had no idea what was in store for me and I had no idea it was even possible to be that sick — I had always assumed that there was some threshold of pain and suffering, some Agony Index at the pinnacle of which you would simply die.  Essentially, I had always assumed that something this relentlessly painful would be fatal.  I started to panic as I understood that it just might be possible to be this sick, or even sicker, indefinitely, and that at some point I would probably lose my mind from the pain.  What happened next seems a blur.

My Pentasa wasn’t working anymore and the next course of action was to get on an infusion treatment that basically gives you AIDS: it destroys your immune system.  You get all the opportunistic infections of an AIDS patient including thrush, pneumonia, and even cancer as so-called side-effects of the medication. Meanwhile, Crohn’s itself is not curable and is progressive, meaning that it never goes away and only gets worse.  So then, looking down that road, you have Crohn’s, AIDS, and cancer to contend with and all that comes with each condition including more treatment, more side-effects and more opportunities for medical accidents, treatment failures and complications up to and including death.  I suspect that actor Shannen Doherty took this treatment for her well-known case of Crohn’s and that the Crohn’s medication caused her cancer in the end.  I suspect the same thing happened to my fitness trainer who had an autoimmune disease and ended up with cancer too.  I began to see my own future.  And I was so desperate to have even a temporary respite from the agony of Crohn’s I was going to take the medication anyway.  I was tested for tuberculosis — a precondition to having your immune system decimated because any active infection at that point can kill you — and I was going to start the infusion treatments as soon as possible.  Everything up to this point had been either free samples of medication or self-pay and I was prepared to pay additional thousands of dollars if it meant I would find some relief — the infusions alone were to be something like $4,000 each, to be repeated every 8 weeks.

In the meantime, I had taken the first doctor’s advice and applied for health insurance.  Because I had not worked as an attorney for about 4 years by then and had started a small business that was compatible with my new and worsening disability I applied as an uninsured person through Obamacare which placed me on Medicaid due to my small income.   The first thing Medicaid did was deny the Crohn’s medicine I was already on (Pentasa, which didn’t work much anyway if at all) and then my doctors fired me because they didn’t take Medicaid.  Without a doctor, any plans for the infusions were put on indefinite hold.  At that point, because I had practiced benefits and anti-poverty law for years, I knew where I was headed: in and out of the hospital and fighting with Medicaid to approve maddeningly ineffective medicines and treatments and brutal, gravely dangerous ones, all of whose known side effects could be just as bad as if not worse than the disease itself, and where even a favorable resolution to the Medicaid issue would easily take months if not years to achieve.  All the while suffering with the hellish, unrelenting agony of un- and undertreated Crohn’s.  I knew what I had to do.

I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and treat with medical cannabis.  I had hoped that I would get better and go home but it’s now been 3 years and I am still here.  I have gotten significant pain relief and improvement in my Crohn’s symptoms which I consider a hard-won and unlikely personal success.   Nothing can diminish that and I am immensely grateful to have gotten some relief.  But now I have spent my life savings, liquidated my assets, and maxed out and destroyed my credit, and although I have worked on my small business as best I could, almost everything is gone. I will soon be facing homelessness as a chronically ill cannabis refugee.  Because I have refused Western medical treatments for my illness I am not eligible for disability-based benefits.  My attempt to “help myself” financially by starting a small business has complicated my finances such that I am not eligible for any need-based benefits at all, or anytime soon.

Not knowing what else to do, and wishing to document my experiences, I have started this blog.  It is intended to be a very short-term project where I will record my insights and what I have learned from my relatively new station as a chronically ill person in the context of Western patriarchal and capitalist medicine, and my resistance to it.  I hope to absolutely excoriate Western medicine’s treatment of Crohn’s and other serious illness; to rail against the disability- and income-based benefits structure where so many sick, injured and otherwise vulnerable people fall through the cracks; to describe my treatment successes and failures, including my treatment with medical marijuana (also known as medical cannabis, medical pot, or MMJ); to describe the crushing disappointment and sorrow I have experienced through family and friends’ failure or willful refusal to really “get” what Crohn’s is all about, what Crohn’s patients go through and how disabling Crohn’s can be; and hopefully to find a solution to the untenable situation in which I currently find myself.  At the very least, I will find some comfort knowing that I have spoken the truth aloud about my experience as a Crohn’s patient disaffected with Western patriarchal and capitalist medicine; as a cannabis refugee; and as an attorney who in the end, may be unable to help even myself successfully navigate the social, legal and financial hardships of a serious chronic illness.

To all Crohn’s patients — and all those seriously ill and disabled — who may find themselves reading here, I offer my empathy for you and your condition, my understanding of your plight, and my sincerest hope that you will find some comfort somewhere, whether through successful traditional or alternative treatment, miraculous or spontaneous remission, or simply by reading these words and the words of other truth-tellers online and off.  To Crohn’s patients specifically, I have received tremendous comfort and knowledge from reading your testimonies on online support forums and your truth-telling has soothed my soul and enriched my mind.  I hope to return the favor by recording my truths here, especially those that are taboo, contrary, uncomfortable, and rarely addressed.  Please feel free to comment here or contact me using the contact form at the top of the page.  I can’t promise I will respond, but know that I will read your words, and that I feel you.  I really, really feel you.

[cookinguptales]

Okay so weird question, but how exactly did you get diagnosed with POTS? I was diagnosed with hypermobility syndrome and partial arrhythmia a while ago, and it's only just recently that I've had a doc wonder if I have POTS. He didn't really tell me anything about POTS, and now I'm really lost! Do you think it's unlikely that I could get to be 21 and not be diagnosed?

Strap in, friend, because the story of how I got diagnosed is long and unpleasant.

So to start off, here’s a basic explanation of Postural Orthostatic Tachycardia Syndrome. It’s a syndrome, which means that it is a description of a collection of symptoms rather than an underlying cause. Frankly, doctors aren’t super sure why any of this happens, what exactly causes it, or even if it’s genetic or what. (But my mom, sister, and grandmother all show signs of mild POTS, so uh. It’s probably genetic.) The long and short of it, though, is that your blood vessels are supposed to automatically tighten or release in order to control blood flow. When you stand up, they tighten to counteract gravity and make sure blood stays where it should be. When you have POTS, your blood vessels don’t do what they’re supposed to do. Your autonomic nervous system stops controlling this tightening and loosening process, which means your blood flow is not being adequately controlled. (Also, there seems to be some research showing that #1, we tend to have more elastic blood vessels, which means they just expand when they fill up more – bad because that means your body can’t use blood pressure to regulate blood flow, either, and #2, we may not always have enough blood in our bodies to fill our blood vessels, so again, shitty blood pressure.) ANYWAY, what all this means in practice is that assorted parts of your body aren’t getting enough blood, or they’re getting too much blood. Blood does all sorts of important things for your organs, especially oxygenating them, so this really means that POTS is an “anything that can go wrong will go wrong” situation. Anything in your body that uses blood can go haywire at any time. And sorry to say, that’s everything.

Now, POTS is highly variable. Again, it’s a loose collection of symptoms, and those symptoms are different for literally every patient. POTS is actually super common in teenage girls, but it tends to be very mild and some teens (mostly boys, mind) completely grow out of it, so people often don’t even notice they have it. People only just started researching it and it’s still not talked about much, which, well, is probably due to sexism. I learned the hard way that teenage girls are not generally listened to when they complain about nebulous symptoms, especially if those symptoms have literally anything to do with hormones and menstruation. (Which POTS does. It’s…I think ¾ of all people who have it are biologically female, and onset usually accompanies periods of hormone fluctuation such as start of menstruation, childbirth, or start of menopause. Most sufferers get it in their teens when they start getting their period.) Like… It’s hard to really put this in a gender neutral way because I promise you, the reason doctors are shitty about POTS is tied to both the biological and societal effects of being female. That’s an aside though.

Anyway, tl;dr, it’s different for everyone and doctors think you’re nuts. When I was diagnosed, in the informational packet literally said “THIS IS NOT ALL IN YOUR HEAD” because so many patients have been repeatedly told that. For me, I was actually uh. I don’t want to say lucky? But in some ways I guess, yeah, lucky. I have a really bad case of POTS with some really severe symptoms. I have a lot of digestion problems, extreme exhaustion problems, dizziness, faintness, anxiety/depression, pooling/tingling/coldness in extremities, and here’s the biggie – blindness. When I stand up, I often just straight-up go blind. (Or if I’m just sitting there doing fucking nothing if I’m on an airplane.) It was really bad especially when I was a teenager. It used to be like literally every fucking time I stood up. (We later found out it was because all the blood was draining out of my head bc gravity. Turns out your brain likes blood! This is also why it hurts so much.) Now, doctors ignored most of what I told them about exhaustion, trouble keeping down food, aches and pains, etc. I was repeatedly told “oh, well, that’s just part of being a teenage girl”. Like honestly, try telling someone that you have exhaustion, pain, and nausea relating to a period and see how seriously you get taken. Jesus.

BUT UH THEY COULD NOT IGNORE THE BLINDNESS. Like I don’t care how teenage girl-y you are, it is not normal to go blind on the regular! My doctors could not figure out what the hell was happening. And I do mean doctors. I got POTS when I was around 10, along with my period. I was diagnosed when I was almost 18. In the meantime, I was passed around between dozens of doctors and honestly? I was a guinea pig. They didn’t know what was wrong with me so I was subjected to constant barrage of tests and treatments that made me a hell of a lot sicker. I was going to like 3 different doctors a week, sometimes every day. There are very few medical tests I have not had at least once. Some of the treatments they tried, I later learned, carried a strong risk of addiction, permanent neurological damage, and death. I was a drugged-out mess trying to drag myself through 15 flavors of physical therapy every day. Like uh. In short, my teenage years weren’t…good… 

I finally got referred to like my sixth neurologist, and the guy was like “okay, you have been passed around between neurologists, cardiologists, ENTs, sleep disorder specialists, etc. for YEARS and we don’t know what’s wrong, so it makes no sense to keep ‘treating’ you – so I’m gonna take some readings and send them (and you) to a research hospital”. And that’s what he did! He took me off all of my medications (leading to the kind of DTs that honestly possibly could have killed me; I researched a few of the medications later and let’s just say you’re not supposed to go off them cold turkey) and did some tests. He found out some stuff like my blood pressure moves around a lot when I stand up. And sometimes my blood pressure was as low as 60/40. (Yo, that’s almost dead. The nurse took the reading three times with two different machines bc she was freaking out, lmao.) So he referred me to Mayo Clinic.

Now, what I did not know before this was that Mayo was actually the clinic that had discovered (and still researched) POTS! They saw a lot of girls like me. They took some blood, did a few tests, and when I had my appointment with them, they knew in under a half hour that I had POTS. I…cried. A lot. haha. It was so bizarre how many things in my life were actually an indicator of POTS. They were like “do you often sit all folded up?” and I basically exclusively do – and often got in trouble for it in school – and they were like “yeah, that’s POTS, you unconsciously try to keep all your limbs tucked in to reduce how far your blood needs to go”. Which is, I guess, why I tend to lose sensation in my legs and/or have my feet turn purple when I sit in normal chairs. lol. “Do you ever get dizzy or black out when you stretch or yawn?” oh yeah. “Do you get really sick when you take hot showers?” almost died once or twice, check! “Do you get weak when you lift things above your head?” you betcha. “Do you have a lot of problems with heat and sunlight?” OH YES I DO. Living in Florida was hell. I’d be vomiting and unable to stand up after like 30 minutes outside in the summer. I still vomit and get migraines if I look at a sunset, when the sun is strongest. Sensory sensitivity, especially photosensitivity, is a thing with POTS.

The actual diagnosis of POTS is kind of difficult. They usually have to do a ton of tests to rule everything else out first. Then they’ll usually try a tilt-table test (they tilt ya and measure your heart rate to see if your heartbeat skyrockets to help battle your blood doing weird shit) or a sweat test (which I am told is supposed to be painless but was one of the most painful experiences of my life so maybe it was a POTS thing) or look at your pee and see if you’re hella dehydrated. If you have POTS, you’re pretty much always hella dehydrated. (Gross but important: a symptom I never mentioned bc I didn’t know how abnormal it was – it burned like HELL when I peed. Turns out I was grossly, dangerously dehydrated. My urine was so concentrated that it was literally burning my urethra. idk how this slipped by so many doctors, but drink some dang water!) So it’s really a combination of tests for diagnosis, and they have to know to look for it in the first place! More and more doctors know about POTS now, but when I was first diagnosed almost a decade ago (this February! :’) when I went to college none of the school doctors knew about it. My family doctor didn’t know. None of my specialists knew about it. They wouldn’t give me student vaccinations bc they didn’t know how they’d interact with my brain. lol. It’s better now, though! I recently got a new doctor when I left my school’s health system, and she knew what POTS was! I was so happy, haha. Once I had a doctor literally google it right in front of me, so it was uh. A welcome change.

All this is to say that getting POTS diagnosed can be hell!! And I could definitely buy that you’re 21 and haven’t yet been diagnosed, especially if you’re female. My recommendation is this: the main treatment for POTS is diet and exercise, and that can’t hurt even if you don’t have POTS. I shit you not. There’s no cure or anything, but you are supposed to drink A LOT of water (I drink over a gallon a day, and that’s on days I’m not dealing with the sun) and eat a LOT of salt (”as much as you can stand” was their exact wording) and wear compression clothing (spanx and compression socks help me) and try to keep your body as toned as possible. It’s really easy to get out of shape when you have POTS (god knows I did), but they recommend trying to keep your blood moving. (THOUGH, CAVEAT!! I put on a lot of weight since I got diagnosed, and I have to admit. It’s gotten my blood pressure to a healthier level. So idrk what to make of that.)

I’m not gonna tell you to start eating massive amounts of salt when I don’t know your body, but drinking water can’t hurt you. So if you suspect that you may have POTS, start drinking water. This is not a replacement for a treatment plan, but it can’t hurt you! It can only help! So while you’re working with your doctor, just drink a lot of water and see if it helps you feel better. It is like night and fucking day with me.

Finally, POTS has a high comorbidity rate with other issues. In other words, if you have a severe case of POTS, you probably don’t only have POTS. A common illness to have with POTS is EDS, or Ehlers-Danlos Syndrome. It’s a type of hypermobility, which may be why your doctor is concerned. (I don’t have EDS, probably, but I do have some pain/movement issues that they’ve never been able to pin down, so there’s probably…something. idk.)

Here’s my advice. Work with your doctor to try and figure things out. Drink water. Make sure you have a good doctor whom you trust. Even after I got diagnosed, I regularly got medical professionals who believed this shit was all in my head. And try not to worry. Like I said, for most people who have it, POTS is extremely mild. If you change your lifestyle, you might not see many symptoms at all, and if you do, well. Work with that trusted doctor. Hit me up. I know a lot of ways to get a lot of salt in your body. lol