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).
Wednesday, November 15, 2017
Thursday, November 2, 2017
My first colorectal surgery
One thing I haven't really talked about on here lately is my Ulcerative colitis. With all the issues with my eyes, the UC was kind of second hand. In the battle between vision and a colon, you worry about your eyes first. But I have been in a UC flare, one of the reasons I'm on oral prednisone is to treat that.
What does it mean for me to be in a flare? Generally increased bowel movements. I don't go into these details often because "you're not supposed to talk about poop" but this is my blog and I'll poop if I want to. I won't go into all the details on here about my disease, but for me, I generally go to the bathroom twice every morning when I'm healthy. Once right when I wake up and then generally within the first hour or two of being awake. When I'm in a flare, I can go up to 15 to 20 times a day. I was going about 7 to 8 times a day when my eyes first started acting up in September. It's controlled well by the steroids so I was going maybe 3 times a day. I keep track of this all in an app designed for patients with IBD.
I started to have some pain on Thursday. I thought it was just hemorrhoids/rectal pain acting up. When I was first diagnosed in 2002, my disease started as ulcerative proctitus, meaning that most of the inflammation is found in the rectum and last six inches of the colon. Over the years, it became leftsided colitis, meaning the last turn of the colon down is affected, and then to pancolitis, meaning my entire colon is affected. Since my disease starts in my rectum, pain down there is pretty common for me. So I didn't think too much about it even on Friday I was having trouble walking home from work. I just continued my Epsom salt baths, Metamucil cookies and prepH treatments, which usually clears things up in a few days. Since I wasn't having super increased bowel movements, I wasn't too concerned at first. As the weekend progressed, the pain got worse and worse. By about 5am Sunday morning, I could not handle it. My mom brought me to the ER. I don't think she thought I needed to go until she actually saw me in person. I have an extremely high threshold for pain. This was literally the worst pain I have ever felt in my life. Ten out of ten. The angriest face on the pain chart.
We got to the ER and they took me back right away. I couldn't sit in the chair in triage, because it hurt so bad to sit (or move). As we walked back to the room, I ended up starting to pass out and had to be wheeled into the room via wheelchair. They hooked me up to fluids and pain medicine, and started me with some prep to drink before a CT Scan. The CT Scan was really hard on me because laying on my back was agony. The girls in CT propped up my feet and I gritted my teeth and held my breath so they could figure out what was going on. It was a perirectal abscess. Horseshoe shaped and 6.6 by 6.5 by 7.7 cm is size. That is pretty large, if you're wondering. I needed emergency surgery to drain it.
I was in surgery by about 5pm and was back in the hospital room by about 8pm. Immediately after waking from surgery, I had less pain and agony. Still some pain, but so much less and no more pressure. I was hooked up to fluids and IV meds and my body swelled and I was up every single hour to call the nurses to help me to the bathroom so I could pee, which took more effort than you'd think. I honestly had muscle soreness like I had gone to the gym from lifting myself in and out of bed without letting my butt touch the bed. Want a core workout? I don't recommend this one, but it will work.
I spent two days in the hospital. I couldn't leave until I moved my bowels. That first movement hurt. A lot. I got home Tuesday afternoon. I'm happy to be in my own bed and my own bathroom. I've been resting mostly. Watching Netflix and reading and trying not to let my brain turn into mush. Lots of baths and showers to keep the wound clean and my muscles relaxed. I can go back to work when I feel ready, but it may be a few more days. I can't be away from my supplies and a restroom for very long. I can't lift things. Standing in one place for too long hurts and makes me feel woozy. I've been walking the halls of the Lafayette every few hours to keep myself moving. Each time after a walk, I generally lay down and fall asleep for a little while.
My body is tired and sore. I'm taking pain pills and antibiotics and steroids and eyedrops and a slew of things. I had to make a chart to keep track of all of my medicines. Mentally, I'm starting to get tired. I've had friends come and visit the last few days which has been really great. I've gotten cards and phone calls and flowers. I feel well supported and loved. But I can't help but be sick of this. I know I shouldn't complain. I know I am so lucky to have had this disease for more than 15 years and this is the first time I've had to have surgery, the first time I've even had to talk to a colorectal surgeon. The guy in the hospital room across from mine lost his colon on Monday. He spent the night before crying over the loss of 5 feet of tissue that was a part of him. My roommate in the hospital was a 90-something lady who was on TPN (tube feeding) and needed two orderlies to help her sit in a chair for an hour a day. I honestly felt a little privileged sitting in this unit, with my normal diet and ability to walk around. But still, this constant being sick, this struggle is a lot. And all I want to do is ride my bike and do yoga and feel healthy again. It's been 14 months since the lupus symptoms came. Fourteen months since I've felt normal. It's just been one thing after another for 14 freeking months. I just really need things to start changing.
Ok, enough complaining Ang. Here's a list of things I'm thankful for:
1. My roommate at the hospital was a blessing. She was the sweetest woman. We kept going "Hey, you ok?" "Yeah, I'm ok, you ok?" every couple of hours.
2. I have amazing friends who have come to my apartment to get me things while I was in the hospital, visited me in the hospital, have brought me food, sent me cards, and just been so supportive.
3. I am totally not gonna get hooked on pain pills because every time it's time for a pain pill, I think of how I can't become one of Mark Poloncarz's statistics in the Opiate Epidemic and I've honestly been taking less pain pills because of it. Thanks Mark!
4. My office is so supportive and has worked with me through all of this. And I don't have to stress about work...any more than I do normally (because I love my job probably a little too much.) But to know that their first priority is me being healthy is a huge blessing.
5. I can't lift things, but I live in a building with friends who work here, so I was able to ask one of them to take out my garbage today because I had some stuff getting stinky in one of the bags.
6. Being stuck home and able to read is far far, far superior to being stuck home and legally blind.
7. I MET ALTON BROWN TODAY!!! He was at the coffee bar in my building, Public Espresso. I guess he met them 3 years ago when he was last in Buffalo and came to visit today to see all the things they're up to. I'm so excited for my Public Espresso buddies and all the good things they have going on! #publicespressogroupie
This latest episode in my health is going to set me back a bit financially. Please consider donating to my GoFundMe if you are so inclined. For those who have contributed, thank you and I love you. Every bit helps. https://www.gofundme.com/cydtz2-angelas-medical-fund
Don't want to donate online? I also accept food, runs to CVS to pick up gauze, wipes and supplies, book and movie suggestions, and visits to keep me company! Your love and prayers also mean the world to me. xoxo
What does it mean for me to be in a flare? Generally increased bowel movements. I don't go into these details often because "you're not supposed to talk about poop" but this is my blog and I'll poop if I want to. I won't go into all the details on here about my disease, but for me, I generally go to the bathroom twice every morning when I'm healthy. Once right when I wake up and then generally within the first hour or two of being awake. When I'm in a flare, I can go up to 15 to 20 times a day. I was going about 7 to 8 times a day when my eyes first started acting up in September. It's controlled well by the steroids so I was going maybe 3 times a day. I keep track of this all in an app designed for patients with IBD.
I started to have some pain on Thursday. I thought it was just hemorrhoids/rectal pain acting up. When I was first diagnosed in 2002, my disease started as ulcerative proctitus, meaning that most of the inflammation is found in the rectum and last six inches of the colon. Over the years, it became leftsided colitis, meaning the last turn of the colon down is affected, and then to pancolitis, meaning my entire colon is affected. Since my disease starts in my rectum, pain down there is pretty common for me. So I didn't think too much about it even on Friday I was having trouble walking home from work. I just continued my Epsom salt baths, Metamucil cookies and prepH treatments, which usually clears things up in a few days. Since I wasn't having super increased bowel movements, I wasn't too concerned at first. As the weekend progressed, the pain got worse and worse. By about 5am Sunday morning, I could not handle it. My mom brought me to the ER. I don't think she thought I needed to go until she actually saw me in person. I have an extremely high threshold for pain. This was literally the worst pain I have ever felt in my life. Ten out of ten. The angriest face on the pain chart.
We got to the ER and they took me back right away. I couldn't sit in the chair in triage, because it hurt so bad to sit (or move). As we walked back to the room, I ended up starting to pass out and had to be wheeled into the room via wheelchair. They hooked me up to fluids and pain medicine, and started me with some prep to drink before a CT Scan. The CT Scan was really hard on me because laying on my back was agony. The girls in CT propped up my feet and I gritted my teeth and held my breath so they could figure out what was going on. It was a perirectal abscess. Horseshoe shaped and 6.6 by 6.5 by 7.7 cm is size. That is pretty large, if you're wondering. I needed emergency surgery to drain it.
I was in surgery by about 5pm and was back in the hospital room by about 8pm. Immediately after waking from surgery, I had less pain and agony. Still some pain, but so much less and no more pressure. I was hooked up to fluids and IV meds and my body swelled and I was up every single hour to call the nurses to help me to the bathroom so I could pee, which took more effort than you'd think. I honestly had muscle soreness like I had gone to the gym from lifting myself in and out of bed without letting my butt touch the bed. Want a core workout? I don't recommend this one, but it will work.
I spent two days in the hospital. I couldn't leave until I moved my bowels. That first movement hurt. A lot. I got home Tuesday afternoon. I'm happy to be in my own bed and my own bathroom. I've been resting mostly. Watching Netflix and reading and trying not to let my brain turn into mush. Lots of baths and showers to keep the wound clean and my muscles relaxed. I can go back to work when I feel ready, but it may be a few more days. I can't be away from my supplies and a restroom for very long. I can't lift things. Standing in one place for too long hurts and makes me feel woozy. I've been walking the halls of the Lafayette every few hours to keep myself moving. Each time after a walk, I generally lay down and fall asleep for a little while.
My body is tired and sore. I'm taking pain pills and antibiotics and steroids and eyedrops and a slew of things. I had to make a chart to keep track of all of my medicines. Mentally, I'm starting to get tired. I've had friends come and visit the last few days which has been really great. I've gotten cards and phone calls and flowers. I feel well supported and loved. But I can't help but be sick of this. I know I shouldn't complain. I know I am so lucky to have had this disease for more than 15 years and this is the first time I've had to have surgery, the first time I've even had to talk to a colorectal surgeon. The guy in the hospital room across from mine lost his colon on Monday. He spent the night before crying over the loss of 5 feet of tissue that was a part of him. My roommate in the hospital was a 90-something lady who was on TPN (tube feeding) and needed two orderlies to help her sit in a chair for an hour a day. I honestly felt a little privileged sitting in this unit, with my normal diet and ability to walk around. But still, this constant being sick, this struggle is a lot. And all I want to do is ride my bike and do yoga and feel healthy again. It's been 14 months since the lupus symptoms came. Fourteen months since I've felt normal. It's just been one thing after another for 14 freeking months. I just really need things to start changing.
Ok, enough complaining Ang. Here's a list of things I'm thankful for:
1. My roommate at the hospital was a blessing. She was the sweetest woman. We kept going "Hey, you ok?" "Yeah, I'm ok, you ok?" every couple of hours.
2. I have amazing friends who have come to my apartment to get me things while I was in the hospital, visited me in the hospital, have brought me food, sent me cards, and just been so supportive.
3. I am totally not gonna get hooked on pain pills because every time it's time for a pain pill, I think of how I can't become one of Mark Poloncarz's statistics in the Opiate Epidemic and I've honestly been taking less pain pills because of it. Thanks Mark!
4. My office is so supportive and has worked with me through all of this. And I don't have to stress about work...any more than I do normally (because I love my job probably a little too much.) But to know that their first priority is me being healthy is a huge blessing.
5. I can't lift things, but I live in a building with friends who work here, so I was able to ask one of them to take out my garbage today because I had some stuff getting stinky in one of the bags.
6. Being stuck home and able to read is far far, far superior to being stuck home and legally blind.
7. I MET ALTON BROWN TODAY!!! He was at the coffee bar in my building, Public Espresso. I guess he met them 3 years ago when he was last in Buffalo and came to visit today to see all the things they're up to. I'm so excited for my Public Espresso buddies and all the good things they have going on! #publicespressogroupie
This latest episode in my health is going to set me back a bit financially. Please consider donating to my GoFundMe if you are so inclined. For those who have contributed, thank you and I love you. Every bit helps. https://www.gofundme.com/cydtz2-angelas-medical-fund
Don't want to donate online? I also accept food, runs to CVS to pick up gauze, wipes and supplies, book and movie suggestions, and visits to keep me company! Your love and prayers also mean the world to me. xoxo
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