I got a bill for bloodwork last month. The actual bloodwork was done in April. It was the last test my former Gastroenterologist ordered for me. The test was to see how much of the Humira was in my system and if I had developed antibodies to the Humira. My insurance denied the test at first, saying I had to go to a different lab to have the bloodwork done. My doctor's office told me to go there and said it'd be covered at the other place. Anyways this is the test that came back, my doctor interpreted as I needed to go back on Humira despite it making me so sick with the drug-induced lupus. So then, nearly five months later, I get a bill in the mail from the blood lab. What they didn't explain to me is that insurance was only covering $21 of the cost...I'd have to pay $533 out of pocket. This is why insurance companies are the real enemy. I'm sorry, but you should have just denied the claim. I would have been completely happy without having that blood test, since the results literally told me nothing that was useful medically.
This week, I successfully negotiated the cost down. I'll be paying $133. It took multiple calls to both my insurance company and to the lab. It's exhausting. And that's still not cheap. And that $400 will be going to hospital bills. It's disgusting. Just another day for those with chronic illness.
Have you ever joined a facebook group about a disease or condition? It's a terrifying world (let's face it fb groups are all kind of terrifying places at times). It amazes me the misinformation that exists out there on the internet. People sharing their horror stories. Sure, I know most people don't join a message board or group to say "hey, I had this issue one time and everything healed up fine, and I never had any problems again". But it's scary the information out there and how wrong some of it can be and how traumatic it is to ask a question and have people immediately share their horror story. Someone told me that my abscess will 100% turn into a fistula so I might as well accept that I'm going to be dealing with this for years and be miserable like they have. It's troubling. A girl followed me on instagram and has been sending me messages claiming her UC was cured by diet, trying to sell me her food coaching consulting services. There is no cure for IBD. Maybe she has no active disease and maybe she'll be lucky and it won't come back. But I too have had times of remission. I had times of no medicine even...a few years of it actually. And then it came back.
Modern snake oil salesmen abound in the internet age. It's a concept that has always fascinated me. I own an antique bottle of Dr. Pierce's Golden Prescription....a snake oil that was produced here in Buffalo right on Main Street Downtown. Now people tell you that you can send in your saliva and it will tell you what foods you should eat, people tell you about your leaky gut syndrome, your gluten intolerance. And yes, I know there are real conditions, but believe me when I tell you that my disease is not caused by food. Since I was 15, I have tried so many different diets...I've tried gluten free, I've tried sugar free. Heck, I gave up dairy for five years because I was told I was lactose intolerant, still had stomach issues, and ended up with osteopenia (the beginning stages of osteoporosis) from not having calcium while I was growing. I know that people want to help when they make these recommendations. But I'm the girl sitting researching in a copy of Physicians Desk Reference, reading scholarly scientific articles and actually researching my disease. When you're to ask me if I've tried these vitamins or giving up dairy, or smoking some weed, you make me feel like you think I'm choosing to be sick. I'd never chose this life. I long for health. I'm an active person. My entire life revolves primarily around active transportation. And I was able to ride my bike exactly twice this entire summer. You have no idea how hard it has been for me to feel trapped in a body that doesn't do what I want it to do. I'm not complaining, I just don't think people realize that when you suggest I "just try this" as if that will cure me, it feels incredibly insulting.
I started back at work last week. Worked a few hours a day to get out of the house and back onto somewhat of a schedule. I'm back basically fully this week. I still get tired fairly quickly and I'm still pretty much stuck in my apartment when I'm not at work. I can't really be away from a bathroom stocked with my supplies. I had to miss the BN360 Kick Off Party last week, where I was being honored as one of Buffalo Niagara Spotlight Young Professionals. I had to cancel a speaking gig I had scheduled for Monday to speak to a new group. There's an exhibit opening at the History Museum this week and I won't be able to attend any of the festivities. I've had to miss two meetings of a discussion group I'm a part of at the TR Site.
I hate feeling like I'm missing out on things. But I keep reminding myself that if I had to drive to work, I wouldn't even be able to work, since I'm still not cleared to drive, so I'm lucky in that regard. All I can do is what I can do. And right now, that's work and then go home and sleep. And sometimes sit at the Public Espresso counter (have I mentioned how much I have loved them thru these two months of illness...having friends located snugly inside my building has been a lifesaver!! Check out their new space that opened today, you will love it!)
I've been having pretty weird headaches...but part of me wonders if that's just from my eyes. My eyes are pretty close to being back to their normal, but it's just off enough that it's annoying, so I wonder if that's what's causing the headaches. As someone with inflammatory bowel disease, I can't take NSAIDs (over the counter painkillers like Motrin, Advil, Aleve, etc)...so headaches are annoying. I usually treat them with caffeine, but I'm not using caffeine right now because I have to keep an eye on things that affect my bowels post-surgery. I haven't taken any of prescription painkillers since Thursday, so I'm hoping not to take any more of those. I'm also experiencing some pretty significant arthritis in my left ankle again. I think it's from tapering the steroids, so I went back up a notch this those this week and we'll try again next week. I have steroid chipmunk cheeks these days, and my already normally super round face looks ridiculous. People say they can't tell, but I can tell and it drives me crazy.
I follow up with my surgeon on Friday. I also have my next Entyvio infusion that day, so it's a big day for me. I had my now regularly scheduled bloodwork done today. I have to go monthly to monitor things. I'm looking forward to seeing those results. I also see my GI next Tuesday so I'm looking forward to touching base with her to see what she thinks about my abscess. It could be a sign I have Crohns Disease and not UC, so I'm interested to get her views on that. At some point, I have to followup with my primary care doctor. I can not stress enough how important it is to have a primary care doctor you trust and who will stand up for you. She fought to get me diagnosed in ways that other doctors failed me. I look forward to filling her in on the last few months and everything that's happened! Nurses from her office have called me since surgery just to check in in my recovery and whatnot, which I really appreciate.
So yeah, that's where I'm at this week. Just another week in the life with a chronic illness(es).
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