Can I just gripe about the little things? I think with Crohn’s disease, we should get a stipend. Point of fact:
1)Soft toilet paper is expensive! And when you go to the bathroom 5X as much as the average person, you have to use that many more rolls. This is unfair. The economy toilet paper hurts if you wipe more than one time. But there is not much toilet paper on those soft rolls. Do you ever feel like you’re the only one replacing the roll in the bathroom and you just changed it a few hours ago? I want a toilet paper tax credit.
2) VSL#3…it’s the only probiotic they’ve done extensive double blind studies on. But it’s covered by insurance only if you’ve lost your colon and are suffering from pouchitis. I want my insurance to cover it so I won’t have to lose my colon and suffer from pouchitis. Where’s preventative medicine? The full dose costs $500 a month and I can’t afford that. So I take 1/4 a dose, or often 1/8 a dose. I could save money on toilet paper if I could afford my probiotics!
3) And who pays for the annual colonoscopy? First you have to buy the disgusting liquid that evacuates your bowels violently. Then you have to pay for that many more rolls of toilet paper. Gas to drive to the hospital, time off spent at work. And just to get the bad news that your colon is still inflamed, you get the co-pay of $500 – $1000 to make the news that much more difficult to stomach.
4) If you’re lucky enough to have insurance, and it will pay for your medicine, but you’re unfortunate enough to be on Remicade or Humira, there’s the $75 or greater co-pay for something that helps for only so long, all the time wondering if you’ll be the percentage that gets lymphoma, and then you’ll have to pay for that!
5) Food – It would be much cheaper if I could only digest beans. Or whole grains for that matter. I know how to eat and I know how to cook cheaply. The two include whole grains and pulses, which go through me rather rapidly, and then I use up more toilet paper! I could feed my family for $500 a month if only I starved. And if you’re on SCD, prepare to spend double on almond flour, 1/2 and 1/2, and vegetables that are often out of season. I’ve got endless kale in the garden, purple cabbage, and fava beans, but they all give me gas, and then I need more VSL and toilet paper, and in the end, I’ve saved nothing.
6) All those vitamin defincies cost money replenishing. Magnesium chloride for my foot soaks at night. Calcium citrate, magnesium glynicate. And iron, vitamin D, fish oil, B vitamins. We want to be healthier, we just can’t swallow the amount of pills it will take to get there. Or afford them when they run out. I have to admit, though, that CVS was having a sale on fish oil, so I bought a 4 month supply. And they don’t even cause fish oil burps! Now I can lower my inflammation AND prevent heart disease? The heart disease would be covered on insurance, but the fish oil that prevents it is not.
7) Hookworms, TSO and whipworms. I payed $7,800 for some worms. Call me a sucker. My insurance will pay for me to die from a fatal brain disease if I try Tysabri, but they will not pay for some worms to prevent me from needing Tysabri. I’ve read that people have gotten TSO covered on their flex spending account. I never got a doctor’s prescription for hookworms, nor was it from a pharmaceutical company, nor is it approved by the FDA. So thousands of dollars for some worms. Thank God for credit cards, before they reduced my credit to 0. The worms were worth it, but when we’re shelling out almost $10,000 for something that has lived inside of us and in the soil since the dawn of humanity, something’s gone very wrong.
Microscope, weighing scale, McMaster slides, and incubators. Because the FDA has ruled hookworms a drug, but will not pursue liscencing it in such a way that it could be covered like a drug, I have to figure out how to incubate the worms myself . This costs money and time! Where’s my worm equipment stipend? We should get bonus points for figuring this stuff out for other people, before the studies. Special credit for an artist with no scientific background. And educating my doctors. I don’t want an honorary diploma, I want the money it takes to earn one so I can pay for my damn microscope.
9) Let’s not forget the extra water, laundry detergent, and energy it takes to wash extra underwear. And the lifespan of said underwear is lessened from abuse. We need an extra underwear stipend. Do you panic when you are on the last pair? Do you have to go to a laundrymat and hide your laundry from fellow washers? Have you ever just thrown a pair of underwear away when you are caught out unaware that the coffee you shouldn’t have drunk has just kicked in? I once left a pair in the Museum of Modern Art in New York. I have such fond memories of shitting in my underwear while walking across the park for the first time! And then having to walk to the museum, wait for tickets, and find the bathroom eventually, realizing it was by then a hopeless cause. Since then, I’ve always kept a spare pair of underwear in my purse. And if you need Dipends at night, the humiliation of wearing a diaper in your 30’s should be worth something.
10) Let’s try not to mention the amount spent on Immodium over life. I could buy a second house.
11) And the co-pays to my psychologist lamenting the past. And learning how to live with the future.
12) How about work lost from the disease itself? I could have been an international spy, but I have Crohn’s disease. Instead I blog in the wee hours of the morning when I should be doing push ups and studying Arabic to prepare for my next case.
13) Let’s end on a lucky number. Maybe I’ll win the lottery and be able to afford endless soft toilet paper.