I don't drive very often, I don't own a car. I never cared about getting my driver's license in high school (it was after my 18th birthday when I got it). I honestly hate driving.
Between 2004 and 2011, I drove at least 40-50 miles a day, first to Niagara University, and then to my first job in Elma. In 2009, I had my first flare of uveitis. My vision did not decrease that much, so it wasn't a huge issue and I was still able to drive. In 2011, my office moved two blocks from my apartment, so I no longer had to drive to work. My uveitis continued to come back, seemingly every spring and fall. Still never too bad. It was manageable.
I have two environmental degrees. I was called "The Queen of Green" at my old job. I moved Downtown to limit my environmental impact. I am an urban planner committed to building a better world through my work and my actions. I am on the board of a nonprofit which advocates for alternative transportation modes and runs our bikeshare program. I work for the nonprofit Business Improvement District responsible for establishing my downtown neighborhood as a neighborhood where you can live, work and play. I am committed to all of these things....i have never been one to just talk to the talk, I insist on walking the walk.
Those are all reasons I give when I explain to people that I sold my car in 2011...they're solid reasons. They make sense to people.
Here's my secret, the deep dark truth I've don't think I've ever told anyone. I don't even like to admit it to myself. I sold my car in part because I was terrified to be reliant on it if the uveitis ever got bad. My first "I'm going to try riding the bus" bus rides were to watch Sabres games at my favorite bar. Everyone thinks it's because I was being safe and not driving drunk. While that's part of it (driving drunk is stupid and I do not condone it), I've never been a heavy drinker, and those first bus rides were actually taken because my eyes were flaring. While my eyes were was never previously so bad that I shouldn't be driving -New York State has a fairly lenient vision requirement, you don't have to have 20/20 vision to drive. But I started to use the bus first because of my eyes.
It all changed September 2017. I had a busy day of meetings the day before. My eyes hurt, but I thought it was because I was tired and stressed. I woke up that morning unable to see. After heavy steroid treatment for six months and eye injections, my vision was 20/50 with my glasses on. Not back where it was, but in a manageable range, and fixable by new glasses lenses. I had an appointment with my eye doctor to finally be able to taper off of the steroid eye drops, to finally be back on the path towards new glases and regular vision. You can't get new glasses while on the steroid drops because there's so much fluctuation with the vision, it's not feasible for me to spend all the money on new glasses that might not work in a day, a week, or a month.
Then, the flare came back. Instead of getting to taper off of the eye drops, I had to increase them to every two hours. The past two weeks have been tough. While not quite as bad as last September, it's a pretty significant vision loss. This morning my vision was 20/200 in my left eye and 20/125 in my right. Legally blind is 20/200. Normal vision is 20/20. My vision is currently not correctable to 20/20....meaning right now, if I get new glasses, I still will be moderately visually impaired.
My driver's license expires on June 8th, my 35th birthday. It cannot be renewed at this time, because I cannot pass a vision test at this point. My eye doctor will not sign off, and rightfully so. As of June 8th, I will no longer be able to drive a car for the foreseeable future.
You'd be amazed at all the things you can accomplish. I had to Chair our professional organizations awards program last week. It required creating a script, a power point presentation, awards certificates, and a press release. Taking the bus to a suburban plaza Office Depot to buy the paper on which to print the certificates. And then presenting the awards with a script written at 30 size font that is still really hard for me to read. I did it. The last two weeks, I had been preparing for a big meeting we had at work yesterday. I am so proud of the work I have accomplished. I have made maps that average people cannot make. I have analyzed survey data from 4004 survey responses in excel tables that would probably scare most people. I haven't missed a single day of work (and actually worked a bunch of overtime, because this stuff takes a lot of time!) Visual impairment will not stop me.
So there's still so much I can do. I can navigate my city easily using public transit sighted or no sight. So why do I feel so bad about not being able to drive? I hate driving. I've never been someone who enjoys it. But it represents so much more than just driving. Riding the bus because you choose to felt empowering because I was putting my values into action. Now it just feels like the bus. This is the first step into a world where I honestly could actually go blind. It's terrifying.
Visual impairment is weird. I can't read menus at places that just have a sign up behind the counter. I go to Public Espresso nearly every day. For all I know, their board says "Angela, please stop coming here, you are annoying" (I know it doesn't....love you guys!!) It's difficult when you're somewhere new to be able to order coffee or food or whatever. Going down steps is a major challenge - depth perception is really hard when things are blurry and steep steps that are all the same color make it really hard (cough cough...I'm talking about the subway system here!) Uneven sidewalks and sidewalks without curb cuts at intersections are very difficult. It's hard for me to know when my cab, uber or lyft has arrived.
I can't make out faces of people standing on the sidewalk near me. I feel bad for all the people I've seen across rooms, or passed on the street, that I've ignored over the last seven months. I don't mean to, I just really honestly can't see. It's really hard to be in groups when you know there are people you should know, such as a networking event. I feel like I'm missing saying hello to someone that I really should say hello to. It gives me major anxiety and is far more upsetting than it should be. It's weird. Some people, you can recognize easily from across the room by their height, their hair, their ears, their glasses. Some people, you know by their voice. But some people, you just can't place. I've had a few people actually talk to me that I'm not entirely sure that I knew who it was in front of me. It's easier in smaller groups - like my work meetings, where there's a limited number of people it could be, and I know all of them, so it's easier to narrow it down.
I'm terrified to live life as a visually impaired person. They don't know why this keeps happening. There isn't a clear solutions for how to make it stop. I have a colonoscopy on June 14th to try to see more of what's going on. And then maybe we can talk about starting a new medicine or something. And then insurance has to approve it. It could still be months before I have any answers. I'd give up my colon to be able to see again. Hell I'd give up a lot more than just my colon to be able to see. I'm exhausted. Isn't two years long enough to be unwell? Two years of my body failing me? I'm so done with this. May 19th was World IBD Day and I couldn't even talk about it. I hate my colon more and more every single year. The motnh of May is actually also Healthy Vision Month. Awareness that I need to spread, because at least I can use what happens to me for something I suppose. If I can let one person suffering know they're not alone. If I can have one person get their colon screened and it prevents all of this from ever happening. If I can convince one person to donate towards research for cures. Because life with my IBD is so much more than you'd ever imagine.
Thursday, May 24, 2018
Tuesday, January 2, 2018
An Ode to Prednisone
Today was my first day off of oral prednisone since September. Prednisone is a steroid that is often used to treat inflammatory disorders. Typically, when I'm on a course of prednisone, it's for a week or two. While four months is by no means the longest course of prednisone, it was long for me. Prednisone is a great drug because it works quickly. It also is a scary drug with bad side effects - muscle cramping, insomnia, etc. One of the side effects is that it can affect your bones. This is a huge concern for me, because I already have had osteopenia bone problems in the past.
The biggest thing with being on the prednisone is that it can delay the healing of open wounds. When I had my surgery, I was still on a pretty high dose, and had been taking it for about a month for my eyes. When you're on prednisone, you can't just stop taking it, your body needs to slowly taper off of it. This is because the prednisone can affect your adrenal glands, so you need to give them a chance to "catch up" as you taper. Additionally, because we're still afraid of my eyes, I had to taper extra slowly, because the uveitis has a tendency to come back if you taper too quickly. So I've been trying to get off of the prednisone since the day of my surgery, October 29th. If I were a normal patient, I probably would of been able to get off of the prednisone in just two or three weeks...instead, it's taken me 10 weeks.
The prednisone was treating my arthritis. And I also haven't been able to take the methotrexate to treat my arthritis and my eyes while I'm healing, because that too can inhibit healing. My left ankle has flared up bad. It's swollen and puffy. Walking on uneven packed down snow is incredibly hard. My doctor had me start wearing an ankle brace. Keep in mind that normal people can take over the counter pain killers, like Advil, but I can't. It hasn't been fun.
The prednisone was also treating my ulcerative colitis. We're not sure what's gonna happen now that I'm off of it. Hopefully the Entyvio has kicked in, but we still don't know if it works, partly because it takes 4 to 6 months to know if it works, and partly because I've been sick since the first week I was on it.
I had my drains out just before Christmas, eight weeks after my surgery. My wounds are about the size of quarters. The last two weeks since they came out, I've had a lot of pain and discomfort. I've spent the holidays in bed. Not that it's different than the last few months...I've spent practically every moment that I'm not at work in bed.
I'm still on steroid eyedrops. I'll be on those for at least another few months. Like I said, you have to taper very slowly or the uveitis could come back. While my eyes have no active inflammation, my vision is still not where it should be and we still don't know that it will come back. And I can't get a new glasses prescription until I'm off the drops for a while. I'd like to say you get used to life being blurry, but honestly, you don't.
But even when this is all over. I'll still have ulcerative colitis. I'll still have uveitis. I'll still have arthritis. It doesn't go away. I want it all to go away. Years of being trapped in a body that hates itself has started to wear on me. It sucks, because people really worry the first few weeks after something happens....after a little while, most stop checking in. It's understandable, people get busy, people have their own lives. I'm super independent and I hate asking anyone for help, but man does that approach get super lonely sometimes. It's hard to feel so alone, especially over the holidays.
But today, getting off the prednisone feels like a big step today. I hope it was.
The biggest thing with being on the prednisone is that it can delay the healing of open wounds. When I had my surgery, I was still on a pretty high dose, and had been taking it for about a month for my eyes. When you're on prednisone, you can't just stop taking it, your body needs to slowly taper off of it. This is because the prednisone can affect your adrenal glands, so you need to give them a chance to "catch up" as you taper. Additionally, because we're still afraid of my eyes, I had to taper extra slowly, because the uveitis has a tendency to come back if you taper too quickly. So I've been trying to get off of the prednisone since the day of my surgery, October 29th. If I were a normal patient, I probably would of been able to get off of the prednisone in just two or three weeks...instead, it's taken me 10 weeks.
The prednisone was treating my arthritis. And I also haven't been able to take the methotrexate to treat my arthritis and my eyes while I'm healing, because that too can inhibit healing. My left ankle has flared up bad. It's swollen and puffy. Walking on uneven packed down snow is incredibly hard. My doctor had me start wearing an ankle brace. Keep in mind that normal people can take over the counter pain killers, like Advil, but I can't. It hasn't been fun.
The prednisone was also treating my ulcerative colitis. We're not sure what's gonna happen now that I'm off of it. Hopefully the Entyvio has kicked in, but we still don't know if it works, partly because it takes 4 to 6 months to know if it works, and partly because I've been sick since the first week I was on it.
I had my drains out just before Christmas, eight weeks after my surgery. My wounds are about the size of quarters. The last two weeks since they came out, I've had a lot of pain and discomfort. I've spent the holidays in bed. Not that it's different than the last few months...I've spent practically every moment that I'm not at work in bed.
I'm still on steroid eyedrops. I'll be on those for at least another few months. Like I said, you have to taper very slowly or the uveitis could come back. While my eyes have no active inflammation, my vision is still not where it should be and we still don't know that it will come back. And I can't get a new glasses prescription until I'm off the drops for a while. I'd like to say you get used to life being blurry, but honestly, you don't.
But even when this is all over. I'll still have ulcerative colitis. I'll still have uveitis. I'll still have arthritis. It doesn't go away. I want it all to go away. Years of being trapped in a body that hates itself has started to wear on me. It sucks, because people really worry the first few weeks after something happens....after a little while, most stop checking in. It's understandable, people get busy, people have their own lives. I'm super independent and I hate asking anyone for help, but man does that approach get super lonely sometimes. It's hard to feel so alone, especially over the holidays.
But today, getting off the prednisone feels like a big step today. I hope it was.
Wednesday, December 27, 2017
Sometimes I Just Need to Complain
I know it's Christmastime and I should feel happy but I just can't. I'm sore and tired and crabby. Everything is healing well from my surgery for the most part. After eight weeks, I finally got the drains out last Friday. So now the wound can actually begin to heal and hopefully I'll start to feel normal again soon. I literally have spent the last eight and a half weeks just alternating between laying in bed at home and working. I'm glad I was able to go back to work when I did, because I would have gone crazy just staying home. I managed to go out to eat dinner with friends last weekend and this weekend. A simple dinner at a restaurant...a totally normal thing, but for me it's terrifying. My bowels still are not controlling themselves correctly. And every time I move my bowels I need to clean really well (ie take a sitz bath for 15-20 minutes) Which is close to impossible to do in public restrooms. I have a travel peribottle that I can fill to spray myself down....but automatic sinks don't allow you to fill a bottle (let alone that the water is one temperature so not exactly what you want to be spraying yourself with). I refuse to go anywhere that doesn't have a previously approved restroom (and I am kind of the restroom expert...I can tell you four public restrooms on the four block walk between my office and my apartment...that's what ulcerative colitis does to you). I really can't go anywhere or do anything. I tire very quickly still. I'm asleep by eight or nine most nights. In addition, I'm terrified of germs. I'm still recovering from a huge infection, so even the thought of getting a cold terrifies me. I am on immune suppressants, so everything hits me harder and for longer than most people. It sucks. I still have drainage, and I'm terrified by any slight variation - is it thicker than yesterday? is it a different color? They say to look out for a change in odor. Easy enough, except I don't ave an olfactory bulb so I don't have a sense of smell to be able to tell what my drainage smells like. I'm terrified that it's infected. I can't see the wounds to even tell if they look the way they're supposed to or not.
And everyone is so happy I'm getting better. But healing from this abscess is one thing. There could still be complications from it down the road. And no matter what, once this all ends, I still have an incurable chronic diseases. My ulcerative colitis and my uveitis don't go away. My eyeballs will never be normal. My colon will never be normal. I am recovering from rectal surgery with a rectum that already doesn't function correctly. I haven't gone into many details here because it's disgusting and demeaning and demoralizing to go through. And I hate people telling me it will get better. Because it won't. It's just something you learn to live with. Another IBD Advocate died this week. It's a reality. I know how lucky I am. But I'm sick right now and I don't think the Entyvio is working. Every bowel movement hurts. And not just because of the quarter sized open wounds I've had for eight weeks, but because I have a chronic disease. And since I can't take the medicines for my arthritis, my ankle is swollen and hurts like nobody's business, my doctor has me wearing a brace to try to help with the swelling. My eyes are still not back to "normal". I'm not healthy. My face is swollen with chipmunk cheeks due to the weight gain from being on so many steroids. I had lost 20 pounds over the summer, because I was finally on track but it's definitely back...and then some. I know I'm not skinny but I've always taken pride in my athletic stamina and endurance. I was a gymnast and a swimmer and a bicyclist...my body was solid, but strong. I could hop on my bike and ride 20 miles the first day of spring without a problem. I haven't been able to get to the gym or workout at all basically in a year and 4 months....other than my few months of physical therapy when I was finally back on track and feeling good. Then I got sick again. I am weak and sickly and flabby in ways that I've never felt before. I'm really scared. And I don't need people to comment about how it'll all be alright because you don't know that. It might not. Once everything heals and I can get off the steroids, we can try to figure out what is actually going on with my body. The arthritis in my ankle and in my fingers could be a side effect of the Entyvio that could have just been masked by the steroids I've had to be on so I didn't go blind. Or it could just be arthritis, which is another extraintestional symptom of IBD. We really don't know how the Entyvio is working because I've been sick for most of the time I've been on the Entyvio...first with a horrible sinus infection, then with my eyes, then with the abscess. I'm so tired of baths. I'm so sick of my bathroom. I have taken at bare two to six baths a day for the last 58 days. I used to enjoy baths, but I may never take a bath again after this.
I went to my parents for Christmas Eve and then I got tired and sore and miserable so I went home after dinner. I missed Christmas Eve mass for what I'm pretty sure was the first time in my life. I spent Christmas Day in bed. I haven't even been able to enjoy my favorite cold snowy weather and that makes me really sad. I'm tired of all of this. I just want to feel better. I just want this all to be over.
And everyone is so happy I'm getting better. But healing from this abscess is one thing. There could still be complications from it down the road. And no matter what, once this all ends, I still have an incurable chronic diseases. My ulcerative colitis and my uveitis don't go away. My eyeballs will never be normal. My colon will never be normal. I am recovering from rectal surgery with a rectum that already doesn't function correctly. I haven't gone into many details here because it's disgusting and demeaning and demoralizing to go through. And I hate people telling me it will get better. Because it won't. It's just something you learn to live with. Another IBD Advocate died this week. It's a reality. I know how lucky I am. But I'm sick right now and I don't think the Entyvio is working. Every bowel movement hurts. And not just because of the quarter sized open wounds I've had for eight weeks, but because I have a chronic disease. And since I can't take the medicines for my arthritis, my ankle is swollen and hurts like nobody's business, my doctor has me wearing a brace to try to help with the swelling. My eyes are still not back to "normal". I'm not healthy. My face is swollen with chipmunk cheeks due to the weight gain from being on so many steroids. I had lost 20 pounds over the summer, because I was finally on track but it's definitely back...and then some. I know I'm not skinny but I've always taken pride in my athletic stamina and endurance. I was a gymnast and a swimmer and a bicyclist...my body was solid, but strong. I could hop on my bike and ride 20 miles the first day of spring without a problem. I haven't been able to get to the gym or workout at all basically in a year and 4 months....other than my few months of physical therapy when I was finally back on track and feeling good. Then I got sick again. I am weak and sickly and flabby in ways that I've never felt before. I'm really scared. And I don't need people to comment about how it'll all be alright because you don't know that. It might not. Once everything heals and I can get off the steroids, we can try to figure out what is actually going on with my body. The arthritis in my ankle and in my fingers could be a side effect of the Entyvio that could have just been masked by the steroids I've had to be on so I didn't go blind. Or it could just be arthritis, which is another extraintestional symptom of IBD. We really don't know how the Entyvio is working because I've been sick for most of the time I've been on the Entyvio...first with a horrible sinus infection, then with my eyes, then with the abscess. I'm so tired of baths. I'm so sick of my bathroom. I have taken at bare two to six baths a day for the last 58 days. I used to enjoy baths, but I may never take a bath again after this.
I went to my parents for Christmas Eve and then I got tired and sore and miserable so I went home after dinner. I missed Christmas Eve mass for what I'm pretty sure was the first time in my life. I spent Christmas Day in bed. I haven't even been able to enjoy my favorite cold snowy weather and that makes me really sad. I'm tired of all of this. I just want to feel better. I just want this all to be over.
Sunday, December 3, 2017
Awareness Week 2017
December 1st thru 7th is Crohns and Colitis Awareness Week. Crohns and Colitis Awareness Week was created by US Senate Resolution 199 in 2011. Crohn's and Ulcerative Colitis are two inflammatory bowel diseases that attack the digestive system. Crohn's disease can impact anywhere along the digestive tract from mouth to anus, and UC impacts the large intestine. Additionally, in many patients, IBD affects joins, skin, bones, kidneys, liver and eyes. These are auto-immune disorders - basically the body decides to attack healthy tissues.
I have Ulcerative Colitis. But I might have Crohn's Disease. We're really not sure. I've had some fancy expensive test that is supposed to tell you which you have, and it said UC, but the test is still experimental, so even those results are inconclusive. I've had some erosion in my small intestine, which would be indicative of Crohn's. My latest incident with the abscess also points itself towards Crohn's Disease. Either way, I have Inflammatory Bowel Disease, and my treatment wouldn't change too much with a different diagnosis, so we haven't worried too much about what we call it.
In the last year, I have had a lot of extra-intestinal issues all connected to my UC. I suffered from drug-induced lupus, a kidney infection, severe muscular problems in my back, a severe flare of uveitis, and a huge rectal abscess that led to my first IBD related surgery and a three day stay in the hospital.
Here's an infographic about my IBD. I liked the one on the UK website better than the US one hahaaaa.
It's been a month since my surgery. I'm not really in the mood to talk about living with UC during awareness week. I've been sharing a lot more than usual because of the issues I've been having lately. And people for the most part are pretty nice about it. But there's so much more I wish I could share, that I wish I could say. I've thought about making an anonymous twitter account, so that I can share all the gory details...because sometimes you need to share the nitty gritty gross details. I think it's important that people know that this disease is horrible and embarrassing and demeaning at times and I'm thankful for my friends who let me tell them those details!
I've been obsessed with Selena Gomez and her story lately. As someone who suffered from lupus for much of the past year...I love the fact that she's willing to talk about it. That she's able to say "yeah, I almost died" because of this is great and empowering. I like that better than the commercials with celebrities such as an NFL player with IBD in them...because sometimes people see those commercials and they think "ok, yeah, it's a disease, but you can have it and play professional football and be fine". For most of this year, I couldn't run to cross the street, let alone across a football field....I'd give anything just to be healthy enough for a nice bike ride. But a life with an autoimmune disease is not always rainbows and sunshine and sometimes it just really sucks.
I go back to the eye doctor and to the surgeon this week to follow up and see how things are healing on both ends of my body. Next week, I have some more bloodwork done, and then follow up with the rheumatologist. So many doctors appointments. 2017 is going to be remembered as the year of the doctors appointments. Blah.
I have Ulcerative Colitis. But I might have Crohn's Disease. We're really not sure. I've had some fancy expensive test that is supposed to tell you which you have, and it said UC, but the test is still experimental, so even those results are inconclusive. I've had some erosion in my small intestine, which would be indicative of Crohn's. My latest incident with the abscess also points itself towards Crohn's Disease. Either way, I have Inflammatory Bowel Disease, and my treatment wouldn't change too much with a different diagnosis, so we haven't worried too much about what we call it.
In the last year, I have had a lot of extra-intestinal issues all connected to my UC. I suffered from drug-induced lupus, a kidney infection, severe muscular problems in my back, a severe flare of uveitis, and a huge rectal abscess that led to my first IBD related surgery and a three day stay in the hospital.
Here's an infographic about my IBD. I liked the one on the UK website better than the US one hahaaaa.
It's been a month since my surgery. I'm not really in the mood to talk about living with UC during awareness week. I've been sharing a lot more than usual because of the issues I've been having lately. And people for the most part are pretty nice about it. But there's so much more I wish I could share, that I wish I could say. I've thought about making an anonymous twitter account, so that I can share all the gory details...because sometimes you need to share the nitty gritty gross details. I think it's important that people know that this disease is horrible and embarrassing and demeaning at times and I'm thankful for my friends who let me tell them those details!
I've been obsessed with Selena Gomez and her story lately. As someone who suffered from lupus for much of the past year...I love the fact that she's willing to talk about it. That she's able to say "yeah, I almost died" because of this is great and empowering. I like that better than the commercials with celebrities such as an NFL player with IBD in them...because sometimes people see those commercials and they think "ok, yeah, it's a disease, but you can have it and play professional football and be fine". For most of this year, I couldn't run to cross the street, let alone across a football field....I'd give anything just to be healthy enough for a nice bike ride. But a life with an autoimmune disease is not always rainbows and sunshine and sometimes it just really sucks.
I go back to the eye doctor and to the surgeon this week to follow up and see how things are healing on both ends of my body. Next week, I have some more bloodwork done, and then follow up with the rheumatologist. So many doctors appointments. 2017 is going to be remembered as the year of the doctors appointments. Blah.
Wednesday, November 15, 2017
Insurance, Quacks and Preparing for Followups
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).
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).
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
Wednesday, October 18, 2017
New Scary Medicine
My vision is still pretty blurry. It's to the point where I'm pretty annoyed with how slowly it's coming back. It's frustrating living in a hazy world. I want to read books. Heck, I want to be able to read my mail, or documents I print to make sure that they are correct. Super thankful for technology, because if I couldn't work right now, I'd probably have gone crazy. But it's still hard to feel like I'm not as productive as I could be, to feel limited. I just want to feel normal. I misjudged a curb yesterday and fell badly on Main Street. Two of my coworkers saw it, so it was super embarrassing. My leg is badly bruised, and I pulled something in my arm catching myself. I'm ready not to do that again.
I'll be starting on methotrexate next week. Methotrexate is a chemotherapy drug, an antibetabolite. It works to suppress the immune system, by blocking an enzyme needed for cells to live. Methotrexate originally got it's use in the 1950s as a treatment for leukemia and other cancers. The American Uveitis Society indicates that "In patients treated with methotrexate, the medicine has
been shown to preserve or improve vision, decrease signs and symptoms of inflammation, spare
the use of corticosteroids, and allow the performance of surgical procedures, such as the removal
of cataracts, to proceed safely."
Methotrexate is an injection that I'll give myself weekly. I was able to pick it up from the pharmacy today, but I have to go on Tuesday to the doctor's office to be trained on how to inject it. It has a ton of crazy side effects. One important one is that you cannot get pregnant while taking it. This is something I rarely talk about, but I will never have kids. It was decided for me long ago in a doctor's office at Children's Hospital that the effort to put my body through a pregnancy was not worth it to me. But it's different to have to think "ok, if by some random chance I did miraculously get pregnant, that would be the end of it." It's weird to have three doctors remind you that you indeed cannot have a baby right now.
There's also pretty major concerns for your liver on this medicine. You have to take folic acid with it in order to try to ward off some of the side effects. Monthly bloodwork will be done to monitor everything. Since it suppresses your immune system, there's always the important risk that it's so much easier to become sick with infections. My entire life is lived in the public. I live in a world of public meetings, events, public transportation....heck, I even live in a hotel. Germs are all around me. The risk of infections scares me. The last drug I took that was similar to methotrexate was in 2011 and it made me horribly ill, with nausea and vomiting and fevers, as well as affected my pancreas. But the risk of going blind is too severe to not try the meds.
Can you tell I've been doing research? I'm so thankful for my chemistry/biology background (I was almost a chemistry teacher). It helps to understand everything that is going on in my body. I agonize over drug choices. My doctors are often amazed at my knowledge and the amount of information I insist on before I'll take any medicines. Heck, I don't even eat processed cheese...why would I be any less picky with a medicine?
Speaking of processed cheese....a cooking blog I follow does an "Unprocessed October" where you challenge yourself to eat only unprocessed foods for the month. It's been interesting to read the posts, since most of my life these days is unprocessed foods. I could do better, even as I write this I'm snacking on a Yoplait Whipped Chocolate Yogurt. I may try to do an entire challenge and really commit to cutting out those few things left in my diet that are a little more processed. Maybe make my own yogurt and breads (is flour too processed for an unprocessed challenge?) and switch to homemade peanut butter cups using my natural peanut butter. It's getting to be the end of Farmer's Market season, so fruits and veggies will be more limited options-wise, which is when I tend to get a bit lazier about food. I try really hard to eat in season, and I'm so thankful for my farmers who help make that possible! And my diet is super reasonable already, I already make sure I try to buy the freshest, highest quality ingredients. I cringe anytime anyone suggests I change anything in my diet when I tell them about my ulcerative colitis. Because first off, it's not caused by food and second off, I already spend so much time and energy thinking about every thing I put into my mouth.
Anyways, I see the eye doctor again next week. Hopefully by then, I'll be able to start tapering the eyedrops. We're going to do it really slowly, to ensure that it doesn't come back, which is common in uveitis if tapered too fast. I've started tapering the oral prednisone, going from 30 mg a day to 27.5 mg a day. Slowest taper ever, but I'm too afraid to rush it. Eight days of being legally blind and 21 days of vision loss will change your life a little.
I still have the Go Fund Me set up, if you are so inclined: https://www.gofundme.com/cydtz2-angelas-medical-fund
I'll be starting on methotrexate next week. Methotrexate is a chemotherapy drug, an antibetabolite. It works to suppress the immune system, by blocking an enzyme needed for cells to live. Methotrexate originally got it's use in the 1950s as a treatment for leukemia and other cancers. The American Uveitis Society indicates that "In patients treated with methotrexate, the medicine has
been shown to preserve or improve vision, decrease signs and symptoms of inflammation, spare
the use of corticosteroids, and allow the performance of surgical procedures, such as the removal
of cataracts, to proceed safely."Methotrexate is an injection that I'll give myself weekly. I was able to pick it up from the pharmacy today, but I have to go on Tuesday to the doctor's office to be trained on how to inject it. It has a ton of crazy side effects. One important one is that you cannot get pregnant while taking it. This is something I rarely talk about, but I will never have kids. It was decided for me long ago in a doctor's office at Children's Hospital that the effort to put my body through a pregnancy was not worth it to me. But it's different to have to think "ok, if by some random chance I did miraculously get pregnant, that would be the end of it." It's weird to have three doctors remind you that you indeed cannot have a baby right now.
There's also pretty major concerns for your liver on this medicine. You have to take folic acid with it in order to try to ward off some of the side effects. Monthly bloodwork will be done to monitor everything. Since it suppresses your immune system, there's always the important risk that it's so much easier to become sick with infections. My entire life is lived in the public. I live in a world of public meetings, events, public transportation....heck, I even live in a hotel. Germs are all around me. The risk of infections scares me. The last drug I took that was similar to methotrexate was in 2011 and it made me horribly ill, with nausea and vomiting and fevers, as well as affected my pancreas. But the risk of going blind is too severe to not try the meds.
Can you tell I've been doing research? I'm so thankful for my chemistry/biology background (I was almost a chemistry teacher). It helps to understand everything that is going on in my body. I agonize over drug choices. My doctors are often amazed at my knowledge and the amount of information I insist on before I'll take any medicines. Heck, I don't even eat processed cheese...why would I be any less picky with a medicine?
Speaking of processed cheese....a cooking blog I follow does an "Unprocessed October" where you challenge yourself to eat only unprocessed foods for the month. It's been interesting to read the posts, since most of my life these days is unprocessed foods. I could do better, even as I write this I'm snacking on a Yoplait Whipped Chocolate Yogurt. I may try to do an entire challenge and really commit to cutting out those few things left in my diet that are a little more processed. Maybe make my own yogurt and breads (is flour too processed for an unprocessed challenge?) and switch to homemade peanut butter cups using my natural peanut butter. It's getting to be the end of Farmer's Market season, so fruits and veggies will be more limited options-wise, which is when I tend to get a bit lazier about food. I try really hard to eat in season, and I'm so thankful for my farmers who help make that possible! And my diet is super reasonable already, I already make sure I try to buy the freshest, highest quality ingredients. I cringe anytime anyone suggests I change anything in my diet when I tell them about my ulcerative colitis. Because first off, it's not caused by food and second off, I already spend so much time and energy thinking about every thing I put into my mouth.
Anyways, I see the eye doctor again next week. Hopefully by then, I'll be able to start tapering the eyedrops. We're going to do it really slowly, to ensure that it doesn't come back, which is common in uveitis if tapered too fast. I've started tapering the oral prednisone, going from 30 mg a day to 27.5 mg a day. Slowest taper ever, but I'm too afraid to rush it. Eight days of being legally blind and 21 days of vision loss will change your life a little.
I still have the Go Fund Me set up, if you are so inclined: https://www.gofundme.com/cydtz2-angelas-medical-fund
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