I was born with this rare disease that only really started getting problematic when I was a teenager, and has been getting worse as the years go by. It is called Hereditary Angioedema (HAE for short). It isn’t very well known, and it has a number of triggers. The most notable is stress. Physical stress will likely cause a reaction in the area (say I get hit in the hand, my hand will be affected), while mental stress causes life to play a bit of a wheel of fortune game with me. I liken it to being deathly allergic to stress, even if there are other triggers and it isn’t an allergy really. Antihistamines and other medications for allergies just don’t do anything. Minus make me sleepy. Likely in too much pain to sleep, so my attempts to summon the sandman and capture him in as cage to answer for ding dong ditching me is just added to the list. Comparing it to an allergy is just the simplest way to describe it.
Much like how a bee allergy is often depicted, my limbs, organs, and even more..sensitive areas can swell to 2-3 times their size. This is painful and annoying at its best, debilitating normally, and can be fatal at its worse. It seems to hit every one differently, which isn’t surprising given that stress is a factor and everyone is unique in that regard, and with me the potentially fatal area that likes to torment me most is the gastrointestinal system. Annoyingly, I also have what some with HAE call ‘wandering swelling’. So, say my hand swells up. This normally lasts for 2-5 days. As the swelling goes down, it will ‘move’ to the forearm. As it goes through its process, it can them more to my bicep or, oddly, to my other arm.
To add to this, I have ADHD. The variant that is especially prone to hyperactivity. You may be under the assumption that a hyperactive person is basically Daffy Duck when he has lost it. ‘Woohoo! Hoho! Woohoo!’ Running everywhere, interacting with everything. Robin Williams on stage is another way to describe it. I am the guy that meth addicts have mistaken for being on crack or meth. I have never touched anything harder than Pot, and that is for medical reasons. Stone sober people think I am one something and pissy, as I talk a mile a minute.
Here is the thing, least with my type, even when we are calmly sitting down, our thoughts are pumping. Our minds are going a mile a minute. Every sound, every bit of movement. We might not make a visual note of it, but somewhere in our minds we have examined every aspect of it. Stressing out over it, freaking out about it. To put it simply, I am not 100% certain I know what it truly means to chill. I know being relaxed, but I know ME being relaxed. Which still tends to involve my mind ripping some subject apart. Just depends on what I feed it. I am always stressed.
The kicker is because they are afraid that I am going to go off and sell ADHD medicine instead of, you know, use it for the disorder it was invented for, I have been unable to find someone who will prescribe an Adult like me medication. I have trouble even finding someone who will diagnose me. I was diagnosed and treated with countless ADHD medicines as a kid. It was just one I became a teenager that the medical profession decided my mental health did not outweigh the potential they couldn’t trust me not to sell my medication. So, as of writing this, I have been unable to find official assistance on ADHD for nearly a decade, if not more. Not without lack of trying.
Going to the doctor has proven only helpful in these cases where I could potentially die from my body’s overreaction to stress. The only medication they will offer me are these steroids that drove my birth mother, with the same disorder, mental. Kinda happens when you have to take steroids for the rest of your life I hear! Luckily, as with most people on the west coast, I had friends who smoked pot!
Turns out, with my mixture of ADHD and traumatic childhood/adult experiences, that shit evens me out. Instead of countless different medications flung at me with side effects including: Sparking my HAE like crazy, that lovely feeling of being a mental zombie, feeling claustrophobic in a meadow, INTENSE CAPS DEMANDING IRRITABILITY, and potential organ failure; I get the munchies. Maybe more into Steven Universe and Adventure Time than is healthy at my age.
Problem is that in order the get this magical medicine I have to go through all these forms and pay quite a bit of money (sometimes they quote $85, sometimes $500. I get fired from jobs for this disability before I can even remember my manager’s name, so that ain’t happening. Don’t even get a discount off the meds! Just the POTENTIAL to not be fired for the medication. Yet I can easily get a prescription for this medication that’ll make me gain possibly 5 new mental disorders in the process and go postal and medical insurance will pay off every bit of that. Doctors even agree with me on this, but they can only apologize that they aren’t allowed to give a prescription. Only recommend it. That isn’t their fault, the fact it is still considered more dangerous than cocaine. I consider it far safer than Prozac. Especially if mixed with other medicines.
Now it is recreationally legal! Hooray. You can’t read my tone. Let me try again, Hoo-fuckin-ray.
You see, a problem with it being legal, yet still being unable to afford the cost of that ‘recommendation’ then you are just another guy wanting to smoke up. The deals for medicinal weed painted everywhere while you still can’t afford the subscription fee for the price.
“It is worth it in the savings!” The counter said. Tell me, would you feel comfortable hearing that when the context is the medicine keeping you stable both physically and mentally? When you still have to pay for the medication but at a discounted price, why doesn’t all the evidence showing this would assist me get me that card? That card that would have saved me a world of stress when I had to hold the label of criminal just for waiting for a business minded self starter (we give our dealers many names to make it feel less horrible. I am partial to medicine man!) in an alley or a parking lot hoping no one has realized you have been sitting in that car an hour, and have done so every week for months. That is, if you are lucky enough to find a dealer who won't ghost you, cancel at the last moment (as in an hour after when you were supposed to meet them), or just run out.
When it was made legal, I sat in lines with others who couldn’t afford the medical card while the more vocal, the ones here just to get high, talk about all the amazing stuff they can afford. How shatter and dabs are fantastic, how all these different edibles and strains work. While I, thanks to my incredibly understanding and supportive Dad, have $20 for that week, and the next, and the next. I have to string that $20 out as long as I can. Not for any fault of my Dad’s, there are still other bills that must be paid. The help he has given me so far is enough the guy deserves a medal or a statue in my eyes, but taxes can really make something that is already rather pricy quite high. So it is depressing, frustrating, and potentially soul destroying to see your medication evolve from political punching bag to cash cow, while still falling into the cracks.
But those munchies are gonna just destroy America, right guys?