In October 2017, I had surgery on my rectum. I have been bleeding ever since. This week marked 800 days of bleeding. It's not every day, but it's the majority of days. We cannot figure out what is causing it. We have not been able to stop this flare. It feels so long since I've been in control of my disease. Hell, we now officially call it crohn's disease, so it's not even the same disease I thought I had. Three years of trying things. So many different drugs over the last three years. I wear adult diapers now. 800 days of diapers.
I had drug induced lupus. I went blind. I had four eye surgeries. I lost my gall bladder. I broke my arm.
And yet, the thing that bothers me is the blood. 800 days of blood.
In two months, I am going on my first week long vacation in three years. All of vacation time has been hoarded and used for medical. Vacation in the form of a half day here bc my gastroenterologist is in east jahunga and takes all day, a hour here to go get a shot in my eyeball, an hour there to tell one more doctor my story.
I finally booked the flights, reserved a rental car, as hotel room. I'm letting myself get excited. And I sit here, terrified that I won't be able to go. Because it now appears this latest medicine isnt working. My stomach roars in pain daily. I plan for my next bloodwork, my next round of tests.
And all I can do is wait. And bleed on the 801st day.
Wednesday, January 8, 2020
Monday, December 31, 2018
New Year, New Me?
I've always been someone pretty comfortable in my skin. I've never cared about my thick thighs or double chins. I've never been skinny, but I never felt ashamed in a bathing suit.
However, chronic illness often makes you feel like you don't know your own body.
I haven't been able to ride my bike in fourteen months. 482 days. I can't even explain how trapped I feel without my bicycle. I can't explain the sense of feeling trapped by bus schedules and the limits of my body's ability to walk more than a mile. I haven't been able to work out in more than a year. I can't explain how out of shape, flabby and gross I feel. Part of it is just feeling ill. But my strong muscular body is turning to fat and I hate it.
However, chronic illness often makes you feel like you don't know your own body.
I haven't been able to ride my bike in fourteen months. 482 days. I can't even explain how trapped I feel without my bicycle. I can't explain the sense of feeling trapped by bus schedules and the limits of my body's ability to walk more than a mile. I haven't been able to work out in more than a year. I can't explain how out of shape, flabby and gross I feel. Part of it is just feeling ill. But my strong muscular body is turning to fat and I hate it.
I can't see properly anymore. Sure, I can read, and I have vision well enough to get my license back. But my vision is forever permanently altered in a way that I hate. I need glasses for both up close and for far away now. I feel trapped in my eyeballs. It's sometimes reported that Monet put off his cataract surgery and he hated his vision after he finally had it. I understand completely, Monet. The water lilies look like shit now and I hate it.
My hair is curly now. I had the straightest finest hair, the kind of hair you could leave the house without brushing. It airdried quickly, usually before I even finished getting ready. But like everyone, I wanted the type of hair I didn't have. I spent my childhood longing to have curly hair like my mom and sister. I'd spend hours in the bathroom with a curling iron, desperate to get my hair to have a little volume. It never did anything. Stylists would curl my hair only for the curls to fall usually as I was leaving the salon. Over the last few years it has started to change Losing my hair due to the shock of illness and surgery and low-dose chemotherapy and other medicines has completely changed the texture of my hair. I chopped off six inches recently....got rid of the thin, scraggly dead bleached ends and suddenly my hair is bouncy and super wavy. It's weird. Having straight hair for the crucial awkward learning how to style days has left me completely unaware of how to deal with wavy hair. When I try to style my hair for work, I feel like a teen trying to style her hair for the first day of 8th grade.
I've always known who I am. But what do you do when you don't recognize yourself in the mirror?
So New Year, New Me seems better than ever this year. I'd love to be someone else when I wake up tomorrow. Truthfully, I love New Years. A chance to reflect and move forward. I've always a fan of taking stock and growing and moving forward. I have had a really bad couple of years. I've had some people I loved pass away. I thought I found love after so long thinking it would never come....I was wrong. Every time I turn around my health is a new challenge. I won't go into all of the hell my life has been. It's a lonely world to be sick all the time. The struggle has been real. Sometimes, I wish I could wake up tomorrow and it could all be different.
Don't get me wrong, I love my life. I've got a lot going for me. But it's easy to wish for a cop out. To wake up and make a resolution to be different, and for it to come true. Wishes and hopes and dreams are important. That's why I love New Years. A new slate, a new chance. There's something great about it.
So right now, I'm going to go to the balldrop and cry myself into the New Year. "If nobody sees you cry, you can say it was raining outside"...and it is raining, so I'm all good there. Because tonight, I'm going to be sad about how bad the end of 2018 has been. And tomorrow? Tomorrow I'm not sure...maybe next year will be better than the last.
I've always known who I am. But what do you do when you don't recognize yourself in the mirror?
So New Year, New Me seems better than ever this year. I'd love to be someone else when I wake up tomorrow. Truthfully, I love New Years. A chance to reflect and move forward. I've always a fan of taking stock and growing and moving forward. I have had a really bad couple of years. I've had some people I loved pass away. I thought I found love after so long thinking it would never come....I was wrong. Every time I turn around my health is a new challenge. I won't go into all of the hell my life has been. It's a lonely world to be sick all the time. The struggle has been real. Sometimes, I wish I could wake up tomorrow and it could all be different.
Don't get me wrong, I love my life. I've got a lot going for me. But it's easy to wish for a cop out. To wake up and make a resolution to be different, and for it to come true. Wishes and hopes and dreams are important. That's why I love New Years. A new slate, a new chance. There's something great about it.
So right now, I'm going to go to the balldrop and cry myself into the New Year. "If nobody sees you cry, you can say it was raining outside"...and it is raining, so I'm all good there. Because tonight, I'm going to be sad about how bad the end of 2018 has been. And tomorrow? Tomorrow I'm not sure...maybe next year will be better than the last.
Thursday, December 6, 2018
Crohns and Colitis Awareness Week 2018
This week, December 1-7, 2018, is Crohns and Colitis Awareness Week.
Crohns and Ulcerative Colitis are both Inflammatory Bowel Diseases (IBD). They are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever and fatigue. IBD can be debilitating and sometimes leads to life-threatening complications. In addition to the impact on the GI tract, IBD may also affect the joints, skin, bones, kidneys, liver and eyes.
As you probably know if you're reading this blog, I have Ulcerative Colitis. My colon hates itself, and also causes pretty severe extra-intestinal problems too - like my uveitis, which is the leading cause of blindness in the United States among the working age population. I spent a good chunk of 2017 and 2018 legally blind. And it is because of my colon!
These do not go away. There is no cure. There's treatment and there's dealing with symptoms, but for the rest of my life, I will have ulcerative colitis. I do not get better, it will not go away.
This year for awareness week, I want to talk about some numbers.
For this year:
I had major eye surgery in each eye. It does not cure the uveitis. My eyes are not "better" because of the surgery. They removed my cloudy lens, pulled apart my stuck pupils and implanted a new lens. The surgery was necessary because of the prednisone drops I have to use to save my eyeballs from the uveitis flares. It was 100% a side effect of the medicine. I have been in a uveitis flare since the surgery...there is still inflammation happening in my eyes, because of the inflammation in my colon. It's a chronic problem.
I don't talk about a lot of the ins and outs of my disease...other than with a few people that I trust enough to tell them the nitty gritty gross details. It's not pretty and it's not fun. It's embarrassing in professional situations when your stomach doesn't cooperate. It's embarrassing in intimate situations when your stomach doesn't cooperate. It's embarrassing.
But through all of this, it's fine. I don't share this to make people feel bad for me or sad for me. I don't need your pity. My life is not sad. It can be hard and frustrating, but it's never sad. I am not sad that I am sick. I am sick and it will never go away. I know people mean well, but I can tell when they cock their heads and ask how I'm feeling that they're pitying me. My life is happy and full. There's times that I spend the whole day in bed to recover from a busy week, but I've never felt my disease limits me. I work my ass off to ensure that my problems with my ass don't actually affect my life all that much. But it is my life every single day, just as it has been for the past 16 years. 5,840 days. And I'll wake up tomorrow and do it all again on day 5,841. How do I do it? I'm not sure but I'm sure not gonna give up.
Crohns and Ulcerative Colitis are both Inflammatory Bowel Diseases (IBD). They are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever and fatigue. IBD can be debilitating and sometimes leads to life-threatening complications. In addition to the impact on the GI tract, IBD may also affect the joints, skin, bones, kidneys, liver and eyes.
As you probably know if you're reading this blog, I have Ulcerative Colitis. My colon hates itself, and also causes pretty severe extra-intestinal problems too - like my uveitis, which is the leading cause of blindness in the United States among the working age population. I spent a good chunk of 2017 and 2018 legally blind. And it is because of my colon!
These do not go away. There is no cure. There's treatment and there's dealing with symptoms, but for the rest of my life, I will have ulcerative colitis. I do not get better, it will not go away.
This year for awareness week, I want to talk about some numbers.
For this year:
- 31 doctors appointments.
- 12 blood draws at Quest Diagnostics
- 3 infusions at Dent Infusion Center
- 58 self given injections
- 1 procedure (colonoscopy)
- 2 eye surgeries
- 60 prescriptions pick ups at CVS
- 6 prescriptions delivered by UPS to my office b/c they need refrigeration
- 1 new pair of glasses
- 2 new glasses prescriptions
Want to know what that cost? $79,445.62.
I'm lucky to have health insurance. But this year has cost me $6,724 out of pocket.
$560 a month.
$560 a month.
$140 a week.
$20 a day just on my health.
This does not include the money taken out of my paycheck for my premiums. It does not include things not covered under insurance like supplies, guaze, baby wipes, desitin ointment, etc. Oh and syringes aren't included either. Because I have medicine that I need to inject, but they don't cover the syringes so I pay for those over the counter. I also don't know final costs, because I still have doctors appointments and prescriptions in December...my insurance renewed Dec 1st, so it's always a little scary to find out how much things will be on the new plan!
This does not include the money taken out of my paycheck for my premiums. It does not include things not covered under insurance like supplies, guaze, baby wipes, desitin ointment, etc. Oh and syringes aren't included either. Because I have medicine that I need to inject, but they don't cover the syringes so I pay for those over the counter. I also don't know final costs, because I still have doctors appointments and prescriptions in December...my insurance renewed Dec 1st, so it's always a little scary to find out how much things will be on the new plan!
And it doesn't go away. It's a chronic illness. My colorectal surgery last year did not cure my colitis. We still don't have a medicine that works to treat my colon. The medicine we have tried are not helping entirely. They're reducing symptoms but not the actual inflammation. Until we find a medicine that works, I'll still be in a flare. It's a chronic problem.
I had major eye surgery in each eye. It does not cure the uveitis. My eyes are not "better" because of the surgery. They removed my cloudy lens, pulled apart my stuck pupils and implanted a new lens. The surgery was necessary because of the prednisone drops I have to use to save my eyeballs from the uveitis flares. It was 100% a side effect of the medicine. I have been in a uveitis flare since the surgery...there is still inflammation happening in my eyes, because of the inflammation in my colon. It's a chronic problem.
I don't talk about a lot of the ins and outs of my disease...other than with a few people that I trust enough to tell them the nitty gritty gross details. It's not pretty and it's not fun. It's embarrassing in professional situations when your stomach doesn't cooperate. It's embarrassing in intimate situations when your stomach doesn't cooperate. It's embarrassing.
But through all of this, it's fine. I don't share this to make people feel bad for me or sad for me. I don't need your pity. My life is not sad. It can be hard and frustrating, but it's never sad. I am not sad that I am sick. I am sick and it will never go away. I know people mean well, but I can tell when they cock their heads and ask how I'm feeling that they're pitying me. My life is happy and full. There's times that I spend the whole day in bed to recover from a busy week, but I've never felt my disease limits me. I work my ass off to ensure that my problems with my ass don't actually affect my life all that much. But it is my life every single day, just as it has been for the past 16 years. 5,840 days. And I'll wake up tomorrow and do it all again on day 5,841. How do I do it? I'm not sure but I'm sure not gonna give up.
Sunday, August 26, 2018
All My Eye Doctors...
Most people, when they go to an eye doctor, they see an Optometrist. I've been going to the same eye practice for a long time. My first eye doctor when I was seven was Dr. Lewis. We stayed with him at when he founded his "new" practice in 1997. Dr. Lewis was one of those great old time doctors who really knew his patients. He was super excited when I went back to school, and even more excited that I was studying political science. He was so encouraging to me and believed that more girls needed to study and enter politics. My usual doc these days is Dr. H, who I started seeing when Dr. Lewis reduced his hours (and finally retired a few years back) and he is great. Dr. H was actually listed as the "Best Eye Doctor" on one of the Best of Buffalo lists a few years back. He is an optometrist. In the United States, they are Doctors of Optometry (O.D.). Optometrists are primary care doctors for eye care. To obtain an O.D., you do four years of undergrad, plus four years of Optometry school plus an optional year of residency.
After you see the Optometrist, if you need glasses, you go to an Optician. Mine is named Dennis and he's the best. He's known my family for my entire life and he's built every pair of glasses I've owned, except for one. That one pair was a cheap one from Sterling Optical when I needed quick glasses because my vision shifted a lot very quickly due to my uveitis.
Because I have uveitis, I also see an Ophthalmologist. Mine is through the same practice as my Optometrist. Ophthalmologists are physicians who specialize in eye care, so they hold an M.D. They are trained to manage complicated eye diseases and surgery. To obtain an eye M.D., you do four years of undergrad, four years of medical school, three years of ophthalmology training (residency) and an optional year of specialty training (fellowship). Dr. M is my ophthalmologist. He first diagnosed me in 2009 and treated my uveitis for the first few years, until it was clear I needed more. When I'm not having a uveitis flare, I still see Dr. H, mostly because he thankfully still works out of the office that's on a bus route instead of in Williamsville.
Sometimes, Ophthalmologists specialize in a particular area of the eye, such as the retina or cornea. Because my uveitis is so bad, I also see a Retina Specialist. My first Specialist was through a a practice that had a poor standard of care for conditions like uveitis. Taking a week to schedule for appointments for a uveitis flare was irresponsible on their part so I stopped going there. For reference, my other doctors have seen me outside of business hours to get me in the day I start a flare because it's serious stuff! So, I was referred to Dr. J.
I've been seeing Dr. J for my eyes for the past 5 years. He has done a lot to help my vision. He helped convince me it was time to start on a biologic medicine to treat my ulcerative colitis, since my colon was affecting my eyes so greatly. He's the doctor who administers the shots in my eyeballs when the inflammation gets bad and I'm not sure I would trust anyone else with eye shots. I have seen him 12 times in the last year. It's kind of ridiculous how often I go to the eye doctor.
I also saw another eye doctor, an Oculoplastic surgeon, who is an opthalmologist who is trained in ophthalmic plastic and reconstructive surgery. I had a severe boil on my eyelid in 2015. Boils were one of the side effects I had from Humira that I don't really talk about much. My dad was able to lance most of them for me. One of the benefits of having medically trained parents (he was a hospital corpsman in the Navy) is that sometimes you can save on the copay. The boils were mostly on my neck, back and shoulders. The one on my eyelid required more delicacy. The doctor I saw, Dr. S, did a great job and I barely even have a scar.
So, I had my 12th follow up uveitis appointment since last September with Dr. J. My cataracts have grown. A side effect of the steroids that save my vision is growth of a cataract. My type of cataract is the type that looks like Vaseline was rubbed on the inside of my lens. It causes my vision to be blurry and causes trouble with double vision in changing light conditions, for example walking from outside to inside a darkened room, or walking from inside to outside on a sunny day. I have trouble reading off the computer at times because of my double vision. I have trouble in night conditions because lights have halos around them. I also have synchiae, which is when the inside of your iris gets stuck to the lens, which is caused by the inflammation and scar tissue. If you look at my pupil, you can see that it's kind of a weird shape. The cataract is also quite visible in my right eye, especially if you look at me while my eyes are dilated, it looks cloudy. It's a common type of cataract that a dog gets, so if you can the way older dogs' eyes often look, that's the way my eye is heading. Who needs cat eye glasses when you have dog eyes?
Thursday, I went to see Dr. M. The cataracts are likely what is preventing my vision from being corrected to 20/20 vision with lenses. My severe myopia (nearsightedness) is too bad for lenses to actually be able to correct. When I talk about my vision lately, I'm giving my vision with my glasses on. My vision is at 2/30 in one eye and 20/50 in the other, with glasses on. Without my glasses, I can't even read the Big E on the chart. Because my eyes are not correctable to 20/20 by lenses, I am now visually impaired (I've technically been that since last September since my eyes have not been corrected by my lenses since then). New lenses can not correct this. We had to talk about my options.
I know that there are plenty of blind and visually impaired people in the world who live fulfilling, normal lives. I know that my vision loss is minor in comparison. I know that I shouldn't complain too much. But it's hard to accept. I haven't been able to see properly for a long time, over a year. I'm so sick of it. I can't read books for longer than about 15 minutes without a headache. I can't read the menu across the coffee counter or read street signs or subtitles on the tv. I can't do a lot of my historical research because looking at microfilm is simply not an option right now. I want to see again. I want my life back. It was awful during the refraction exam, which is the usual part of what people think of as the eye exam if they have glasses. The technician kept asking me "1 or 2" and both were super blurry. I started crying, which then of course makes your vision more blurry. Even the clearest they could get my eyes was still super blurry. I've cried a lot since then too.
I know cataract surgery is normally pretty minor. But it's a different case for me and my eye struggles. If I have surgery to remove the cataracts, it can cause chronic inflammation. I already have chronic inflammation. We'd try to nip it in the bud by doing a steroid injection two weeks before the surgery and loading my eyes with steroid eye drops before and after the surgery. We'd have to monitor things closely. There is a risk inflammation could get out of control and I could lose my eye. Also, steroids can impair wound healing. Methotrexate can adversely affect wound healing. Simponi can delay wound healing. Slicing the eye open causes a wound. I had three wounds from my surgery last October. One is still open now. It still bleeds. Almost a year of bleeding. What if my eye doesn't heal and I have a little flappy flap flopping around in my eye?
With cataract surgery, you also have to decide what focal point you want your new acrylic lens to be. I could chose to see up close. I could choose to see far away. It's so hard to decide. I want to see up close, to be able to read my maps and my books, right? I don't mind glasses, I've worn them since I was 6 or 7, so they're basically a part of my face by now. I wore contacts for 3 or 4 years, until I was diagnosed with uveitis. Because of my eye problems, I'm no longer allowed to use contact lenses (also can't wear mascara or eyeliner) because there's a risk of infections and other complications. But if I could get rid of glasses, should I? So many people would jump at the opportunity to be rid of their glasses. That's why things like Lasik are so popular. I'll never be eligible for Lasik because of my eye conditions.
I'm terrified of what the next few weeks/months could be.
On top of all this, we're still not sure the new medicine (the Simponi) is working for my colon...its too soon to tell. My eyeballs are taking priority. All of this is caused by my bum colon. Ulcerative colitis is so much more than just a pooping/bathroom disease. Sometimes I wish it were worse in my colon...it'd be so much easier to just have one complication, to just have one disease to worry about, one doctor to go to. Instead, I got the bathroom part with all this other stuff too.
Please don't offer me advice on this. Don't tell me about how simple your cataract surgery was. Mine is not simple. Don't suggest I get a second opinion. I have enough. My eye doctors are working together on this. My eye doctors who I have trusted the care of my eyes for the entire almost decade I've been dealing with this. I have seen other doctors, and always fallen back to the ones with the answers. I've weighed my options back and forth and back and forth. It has to happen. I'm too scared to lose my sight. A glass eye could be a cool party trick though.
After you see the Optometrist, if you need glasses, you go to an Optician. Mine is named Dennis and he's the best. He's known my family for my entire life and he's built every pair of glasses I've owned, except for one. That one pair was a cheap one from Sterling Optical when I needed quick glasses because my vision shifted a lot very quickly due to my uveitis.
Because I have uveitis, I also see an Ophthalmologist. Mine is through the same practice as my Optometrist. Ophthalmologists are physicians who specialize in eye care, so they hold an M.D. They are trained to manage complicated eye diseases and surgery. To obtain an eye M.D., you do four years of undergrad, four years of medical school, three years of ophthalmology training (residency) and an optional year of specialty training (fellowship). Dr. M is my ophthalmologist. He first diagnosed me in 2009 and treated my uveitis for the first few years, until it was clear I needed more. When I'm not having a uveitis flare, I still see Dr. H, mostly because he thankfully still works out of the office that's on a bus route instead of in Williamsville.
Sometimes, Ophthalmologists specialize in a particular area of the eye, such as the retina or cornea. Because my uveitis is so bad, I also see a Retina Specialist. My first Specialist was through a a practice that had a poor standard of care for conditions like uveitis. Taking a week to schedule for appointments for a uveitis flare was irresponsible on their part so I stopped going there. For reference, my other doctors have seen me outside of business hours to get me in the day I start a flare because it's serious stuff! So, I was referred to Dr. J.
I've been seeing Dr. J for my eyes for the past 5 years. He has done a lot to help my vision. He helped convince me it was time to start on a biologic medicine to treat my ulcerative colitis, since my colon was affecting my eyes so greatly. He's the doctor who administers the shots in my eyeballs when the inflammation gets bad and I'm not sure I would trust anyone else with eye shots. I have seen him 12 times in the last year. It's kind of ridiculous how often I go to the eye doctor.
I also saw another eye doctor, an Oculoplastic surgeon, who is an opthalmologist who is trained in ophthalmic plastic and reconstructive surgery. I had a severe boil on my eyelid in 2015. Boils were one of the side effects I had from Humira that I don't really talk about much. My dad was able to lance most of them for me. One of the benefits of having medically trained parents (he was a hospital corpsman in the Navy) is that sometimes you can save on the copay. The boils were mostly on my neck, back and shoulders. The one on my eyelid required more delicacy. The doctor I saw, Dr. S, did a great job and I barely even have a scar.
So, I had my 12th follow up uveitis appointment since last September with Dr. J. My cataracts have grown. A side effect of the steroids that save my vision is growth of a cataract. My type of cataract is the type that looks like Vaseline was rubbed on the inside of my lens. It causes my vision to be blurry and causes trouble with double vision in changing light conditions, for example walking from outside to inside a darkened room, or walking from inside to outside on a sunny day. I have trouble reading off the computer at times because of my double vision. I have trouble in night conditions because lights have halos around them. I also have synchiae, which is when the inside of your iris gets stuck to the lens, which is caused by the inflammation and scar tissue. If you look at my pupil, you can see that it's kind of a weird shape. The cataract is also quite visible in my right eye, especially if you look at me while my eyes are dilated, it looks cloudy. It's a common type of cataract that a dog gets, so if you can the way older dogs' eyes often look, that's the way my eye is heading. Who needs cat eye glasses when you have dog eyes?
Thursday, I went to see Dr. M. The cataracts are likely what is preventing my vision from being corrected to 20/20 vision with lenses. My severe myopia (nearsightedness) is too bad for lenses to actually be able to correct. When I talk about my vision lately, I'm giving my vision with my glasses on. My vision is at 2/30 in one eye and 20/50 in the other, with glasses on. Without my glasses, I can't even read the Big E on the chart. Because my eyes are not correctable to 20/20 by lenses, I am now visually impaired (I've technically been that since last September since my eyes have not been corrected by my lenses since then). New lenses can not correct this. We had to talk about my options.
I know that there are plenty of blind and visually impaired people in the world who live fulfilling, normal lives. I know that my vision loss is minor in comparison. I know that I shouldn't complain too much. But it's hard to accept. I haven't been able to see properly for a long time, over a year. I'm so sick of it. I can't read books for longer than about 15 minutes without a headache. I can't read the menu across the coffee counter or read street signs or subtitles on the tv. I can't do a lot of my historical research because looking at microfilm is simply not an option right now. I want to see again. I want my life back. It was awful during the refraction exam, which is the usual part of what people think of as the eye exam if they have glasses. The technician kept asking me "1 or 2" and both were super blurry. I started crying, which then of course makes your vision more blurry. Even the clearest they could get my eyes was still super blurry. I've cried a lot since then too.
I know cataract surgery is normally pretty minor. But it's a different case for me and my eye struggles. If I have surgery to remove the cataracts, it can cause chronic inflammation. I already have chronic inflammation. We'd try to nip it in the bud by doing a steroid injection two weeks before the surgery and loading my eyes with steroid eye drops before and after the surgery. We'd have to monitor things closely. There is a risk inflammation could get out of control and I could lose my eye. Also, steroids can impair wound healing. Methotrexate can adversely affect wound healing. Simponi can delay wound healing. Slicing the eye open causes a wound. I had three wounds from my surgery last October. One is still open now. It still bleeds. Almost a year of bleeding. What if my eye doesn't heal and I have a little flappy flap flopping around in my eye?
With cataract surgery, you also have to decide what focal point you want your new acrylic lens to be. I could chose to see up close. I could choose to see far away. It's so hard to decide. I want to see up close, to be able to read my maps and my books, right? I don't mind glasses, I've worn them since I was 6 or 7, so they're basically a part of my face by now. I wore contacts for 3 or 4 years, until I was diagnosed with uveitis. Because of my eye problems, I'm no longer allowed to use contact lenses (also can't wear mascara or eyeliner) because there's a risk of infections and other complications. But if I could get rid of glasses, should I? So many people would jump at the opportunity to be rid of their glasses. That's why things like Lasik are so popular. I'll never be eligible for Lasik because of my eye conditions.
I'm terrified of what the next few weeks/months could be.
On top of all this, we're still not sure the new medicine (the Simponi) is working for my colon...its too soon to tell. My eyeballs are taking priority. All of this is caused by my bum colon. Ulcerative colitis is so much more than just a pooping/bathroom disease. Sometimes I wish it were worse in my colon...it'd be so much easier to just have one complication, to just have one disease to worry about, one doctor to go to. Instead, I got the bathroom part with all this other stuff too.
Please don't offer me advice on this. Don't tell me about how simple your cataract surgery was. Mine is not simple. Don't suggest I get a second opinion. I have enough. My eye doctors are working together on this. My eye doctors who I have trusted the care of my eyes for the entire almost decade I've been dealing with this. I have seen other doctors, and always fallen back to the ones with the answers. I've weighed my options back and forth and back and forth. It has to happen. I'm too scared to lose my sight. A glass eye could be a cool party trick though.
Thursday, July 5, 2018
On to the Next One...
I had a colonoscopy on June 19th. They put me through the ringer to get it scheduled - it took more than two months and a LOT of fighting with doctors, hospitals and insurance. I'm literally exhausted over the way medical treatments are handled for sick patients in America. It breaks my heart. I'm so thankful that at least I'm well enough to work. Sure, some days I really have to grin and bear it, and my job allows me to take all the bathroom breaks I need because I'm not tied to a sales floor or something. I know that I'm a lucky one. But it stinks. I literally had a nightmare the other day that I was supposed to have an appointment with my old GI. I had to go to the bathroom so I "missed my appointment" because I was down the hall and wasn't in the waiting room when they called me and the next available appointment wasn't until January. I know that's a nightmare, but it's honestly not that far from the truth. My appointment to go over my results with my GI isn't until August 14th, two months after my colonoscopy. Because our medical system is so broken. As an existing, sick patient, I can't get in to see my doctor to get my results for two months after a procedure! It's ridiculous. It makes me very angry.
My primary care doctor was able to get me my colonoscopy results. That's right....I can't get the results from the doctor who ordered the colonoscopy (and I've called her three times and emailed three times asking for them). Obviously, my primary care doctor and her office can't give me specifics on the results, but I've had this rotten disease long enough to know what it means. The gist is that my disease is still active throughout my entire colon. Not a big surprise. There is some pretty significant scar tissue in my colon too, from the constant inflammation for over a year. I stopped the Humira in March of 2017, so I'm pretty much thinking the inflammation stems back from around then.
In the meantime, I also had to fight with my doctor's office to get on a new medicine. The Entyvio clearly doesn't seem to be working after a year. My next step is Simponi. It's not as commonly used for bowel disease, but I'm at the point where I'm willing to try anything. So it was another round of phone calls with doctors, insurance and specialty pharmacies to get it delivered. She prescribed it on June 11th. I finally got the medicine today.
Simponi costs $3,900 for the first month (three shots). After the first month, you only take one shot, so it's 1/3 the cost. That's after it's been run through insurance and all that jazz. Our health care system is so broken. Thank god for drug company assistance programs. But they don't make sense to me, why doesn't the company just make the drug cost less?
I just really hope that this is the answer to get me out of this ulcerative colitis and uveitis hell I've been living in for the past year. This is another Anti-TNF medicine, so there is still the possibility of lupus again. I'm honestly terrified. But I'm willing to treat the lupus if it means I won't go blind. Living with a chronic illness is sometimes choosing the lesser of two evils. Given my eyes or my colon, I'd get rid of my colon. Given drug induced lupus or my eyes, I'd take lupus.
Wish me luck.
My primary care doctor was able to get me my colonoscopy results. That's right....I can't get the results from the doctor who ordered the colonoscopy (and I've called her three times and emailed three times asking for them). Obviously, my primary care doctor and her office can't give me specifics on the results, but I've had this rotten disease long enough to know what it means. The gist is that my disease is still active throughout my entire colon. Not a big surprise. There is some pretty significant scar tissue in my colon too, from the constant inflammation for over a year. I stopped the Humira in March of 2017, so I'm pretty much thinking the inflammation stems back from around then.
In the meantime, I also had to fight with my doctor's office to get on a new medicine. The Entyvio clearly doesn't seem to be working after a year. My next step is Simponi. It's not as commonly used for bowel disease, but I'm at the point where I'm willing to try anything. So it was another round of phone calls with doctors, insurance and specialty pharmacies to get it delivered. She prescribed it on June 11th. I finally got the medicine today.
I just really hope that this is the answer to get me out of this ulcerative colitis and uveitis hell I've been living in for the past year. This is another Anti-TNF medicine, so there is still the possibility of lupus again. I'm honestly terrified. But I'm willing to treat the lupus if it means I won't go blind. Living with a chronic illness is sometimes choosing the lesser of two evils. Given my eyes or my colon, I'd get rid of my colon. Given drug induced lupus or my eyes, I'd take lupus.
Wish me luck.
Thursday, May 24, 2018
Life as a Visually Impaired Person, Part 2
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.
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.
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.
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