It's been a crazy week. Got blood work done last Saturday morning, and by Monday afternoon received a frantic call from my GI. He called and was extremely concerned about my LFTs. In just about a month, my AST/ALT levels jumped from the mid 200s to the 600s. We were expecting them to normalize after my gallbladder removal. I had initially scheduled a hepatologist appointment for early July (the first available), but my GI said he would call and get my appointment pushed up to next week.
Thursday, arrived at the same day surgery center. My GI recently switched facilities, and it was his first day doing scopes at his new hospital/surgi center. Things were a bit hectic. After waiting 30 minutes after check in, a nurse gave me a clean catch container for a urine specimen. I managed to collect a specimen, yet could not find a nurse to give my container too. My GI came out to talk and immediately noticed my urine container, and was quite alarmed with my sample. He called the hepatologist on his personal cell, and managed to get me an appointment the next day, Friday. The colonoscopy went well.
My new hepatologist is concerned. I immediately got blood drawn for repeat LFTs, and another test. I was to immediately start a 24 hr urine specimen collection, and to also get about 30 different blood tests today. He was also going to try to obtain my liver biopsies if the hospital still had them, as well as full pathology notes. Best case scenario, is that it is a viral infection such as Epstein-Barr manifesting in my liver. Worst case is autoimmune hepatitis or Wilson's disease. I have been tested a few times for each viral hepatitis, and have been vaccinated for A and B, so those are off the table.
Working in infectious disease epidemiology, I have a decent understanding of viral hepatitis. I am used to seeing multiple lab test values, and LFTs for those with chronic, untreated hepatitis and my LFTs are much worse. I'm just hoping that within a couple of days we get results of my blood work and figure what is causing my liver to fail.
Saturday, May 10, 2014
Friday, May 2, 2014
Chopped Liver
I'm miserable tonight. Maybe it's due to the fact that it's the weekend of the Broad Street Run in Philly, which I was supposed to run. It's the second consecutive run that got cancelled when I found out I was getting surgery. Meeting with my surgeon on Wednesday, she was adamant about waiting at least another 2 weeks before attempting any type of "mileage". She reiterated the point by showing me pictures of herniated abdominal wall from people who rushed recovery.
After meeting with the surgeon Wednesday, I followed up with my GI today. We went over the results of my liver biopsies that they took during my gallbladder surgery. I am once again a medical anomaly, and have a form of liver disease typically seen in obese 50-65 year old women. I do not fit into any of the risk factors, and really are unsure of what has caused my liver to progress this far in disease, at my age. He referred me to a great hepatologist, who can hopefully pinpoint why my liver has become diseased, and how we can treat whatever is going on. I was originally diagnosed with Nonalcoholic Fatty Liver Disease. This progressed first to Nonalcoholic Steatohepatitis, and now I have fibrosis. The fourth and final stage is the cirrhosis. It is extremely rare to have someone who is physically fit, under the age of forty with no history of diabetes, hypertension, viral hepatitis or rapid weight loss to develop fibrosis. I unfortunately am a rare case. At this point it does not look evident that it was drug induced, but it may be an extra-intestinal manifestation of the Crohn's.
I also have to go for yet another colonoscopy next week, which is always such a joy. My blood work has been funky lately, even with starting the Humira, and with everything else going on, he wants to do more biopsies.
I'm just cranky. It's not often I ask the question of "Why me?". At this point, the frustration of disease interfering with normal activities has gotten to me. My wine, and more importantly, running have been taking from me. I was surviving quite well when the pleasure of enjoying food was taken from me, but subtracting running and wine from my life together has made me a bit miserable. I don't even drink much, but it's the proverbial icing on the cake. Since my TBI, normal life functions, have been ripped from me. Memories, cognitive ability, coordination, walking, sleeping, have all been taken away. I have gotten parts of each function back, but having these innate human functions taken away has taken a toll on me. I know that wine, food, and running are all luxuries, but taking away my simplest of pleasures, my releases, my stress relievers, my coping strategies for dealing with the more substantial losses, I am, for lack of a better word, cranky. I'm working on staying optimistic, adding in some walking, and trying to remind myself that it's all for the best for my body.
After meeting with the surgeon Wednesday, I followed up with my GI today. We went over the results of my liver biopsies that they took during my gallbladder surgery. I am once again a medical anomaly, and have a form of liver disease typically seen in obese 50-65 year old women. I do not fit into any of the risk factors, and really are unsure of what has caused my liver to progress this far in disease, at my age. He referred me to a great hepatologist, who can hopefully pinpoint why my liver has become diseased, and how we can treat whatever is going on. I was originally diagnosed with Nonalcoholic Fatty Liver Disease. This progressed first to Nonalcoholic Steatohepatitis, and now I have fibrosis. The fourth and final stage is the cirrhosis. It is extremely rare to have someone who is physically fit, under the age of forty with no history of diabetes, hypertension, viral hepatitis or rapid weight loss to develop fibrosis. I unfortunately am a rare case. At this point it does not look evident that it was drug induced, but it may be an extra-intestinal manifestation of the Crohn's.
I also have to go for yet another colonoscopy next week, which is always such a joy. My blood work has been funky lately, even with starting the Humira, and with everything else going on, he wants to do more biopsies.
I'm just cranky. It's not often I ask the question of "Why me?". At this point, the frustration of disease interfering with normal activities has gotten to me. My wine, and more importantly, running have been taking from me. I was surviving quite well when the pleasure of enjoying food was taken from me, but subtracting running and wine from my life together has made me a bit miserable. I don't even drink much, but it's the proverbial icing on the cake. Since my TBI, normal life functions, have been ripped from me. Memories, cognitive ability, coordination, walking, sleeping, have all been taken away. I have gotten parts of each function back, but having these innate human functions taken away has taken a toll on me. I know that wine, food, and running are all luxuries, but taking away my simplest of pleasures, my releases, my stress relievers, my coping strategies for dealing with the more substantial losses, I am, for lack of a better word, cranky. I'm working on staying optimistic, adding in some walking, and trying to remind myself that it's all for the best for my body.
Wednesday, April 30, 2014
160.
That is what my scale read this morning. At 5’7, this weight makes my BMI 25, falling just into the overweight category. At 159 pounds, I will fall into the “healthy” category.
When I tell people I have Crohn’s, one of the most stinging questions/comments has been “I thought people with Crohn’s are skinny, or don’t have issues with weight”.
This may be one of the most common misconceptions about this disease. For many of us with Crohn’s our weights change just as frequently as we move our bowels (couldn’t resist a great poo analogy). Many of us get deathly ill, and struggle to maintain a normal weight. Then we get put on steroids, which cause us to balloon up, gaining more weight than we could ever imagine. It is a miserable, desperate cycle. The rapid weight gains and losses along with the nasty side effects of these medications destroy or bones and our bodies, almost as much as the disease itself.
Throughout high school and undergrad, I maintained at a healthy 138-140 pounds. I was at the peak of my athletic shape, due to a new found love of long distance running, but also ate like a madwoman. Even when I stopped running, my metabolism kept up and had no issues with weight gain. I never experienced the freshman 15, or even the freshman 5, and have fantastic genetics. Fast forward a year later to my initial diagnosis. Within 3 months I had dropped from 140 pounds to 115 (underweight according to Mr. BMI). I was struggling to make it through the day, with no energy, and complete malnutrition. It wasn’t until this point did my doctors take me seriously, and start to question if my initial diagnosis of IBS was correct. 25 pounds… no big deal right?
Within 6 months to a year (I cannot remember the exact timeline at this point), I was started on steroids. They worked fantastically. I soon was regaining weight and could function like a semi normal human being again. Except, I couldn’t stop gaining weight. My weight eventually ballooned up to 188 pounds. Within a year to two year time frame, I had gained 73 pounds. Seventy three pounds.
Along with the weight gain, and side effects of the steroids my joints became brittle, and arthritic. I am so so happy that I had established a fantastic doctor/patient relationship, and took myself off the steroids with my doctor’s approval. I was in a weird place in my life, and was so frustrated with everything that once I safely tapered off my meds, I stopped seeing my physician. Maybe it was part of me not wanting to accept what this disease was doing to my body, maybe it was the frustration of the nasty side effects of every single medication used to treat Crohn’s, and not wanting to admit it to myself that I needed it. Either way, I parted ways with my physician, and went without seeing a GI doc for close to a year. I slowly lost the first fifteen pounds, in that year, and felt that I felt pretty darn good.
At the end of 2013, my symptoms came back with a vengeance. Knowing what I do now about the disease, I was fortunate to most likely be in remission during the time I was without medical care. Sadly to say that is no longer the case. This time around, with a new doctor, we went over a treatment plan. I adamantly refused to take any form of steroid, which my doctor respected. I had also developed severe inflammation and swelling of my liver, which is typically only worsened by steroids, which made the argument much easier. Pending scopes, I was to start Humira if my disease was active, which of course it was. My weight has been slowly dropping, which I am partly okay with. I also have had to deal with gallbladder issues and surgery, which has definitely wreaked havoc in my body. In six weeks we are going to re-evaluate, and go from there.
Part of me is a bit hesitant to lose more weight. Though I am not a hundred percent comfortable or confident in my own skin at this time, I feel that by holding onto an extra few pounds I will be safe if and when another flare up comes, or this one worsens. It is such f-ed up logic (excuse my language), but it is the absolute truth. By having more weight to lose, the less likely I will be to become underweight, or as severely malnourished as I was before. This way, I can lose twenty pounds and still be “healthy”.
Ideally, I would love to be 145. I have five weeks before I can resume physical activities and exercising which I am eager to start. I just don’t know where I want to draw the line. I know weight is only a number, and people all over social media are all about “non-scale victories” but much to my chagrin, doctors and health care professionals do not care about “non-scale victories”. They care about numbers, and the antiquated BMI charts. They care about pounds, ounces and kilograms. It is a battle I will never win, but I will do what makes me feel the best regardless of the numbers.
That is what my scale read this morning. At 5’7, this weight makes my BMI 25, falling just into the overweight category. At 159 pounds, I will fall into the “healthy” category.
When I tell people I have Crohn’s, one of the most stinging questions/comments has been “I thought people with Crohn’s are skinny, or don’t have issues with weight”.
This may be one of the most common misconceptions about this disease. For many of us with Crohn’s our weights change just as frequently as we move our bowels (couldn’t resist a great poo analogy). Many of us get deathly ill, and struggle to maintain a normal weight. Then we get put on steroids, which cause us to balloon up, gaining more weight than we could ever imagine. It is a miserable, desperate cycle. The rapid weight gains and losses along with the nasty side effects of these medications destroy or bones and our bodies, almost as much as the disease itself.
Throughout high school and undergrad, I maintained at a healthy 138-140 pounds. I was at the peak of my athletic shape, due to a new found love of long distance running, but also ate like a madwoman. Even when I stopped running, my metabolism kept up and had no issues with weight gain. I never experienced the freshman 15, or even the freshman 5, and have fantastic genetics. Fast forward a year later to my initial diagnosis. Within 3 months I had dropped from 140 pounds to 115 (underweight according to Mr. BMI). I was struggling to make it through the day, with no energy, and complete malnutrition. It wasn’t until this point did my doctors take me seriously, and start to question if my initial diagnosis of IBS was correct. 25 pounds… no big deal right?
Within 6 months to a year (I cannot remember the exact timeline at this point), I was started on steroids. They worked fantastically. I soon was regaining weight and could function like a semi normal human being again. Except, I couldn’t stop gaining weight. My weight eventually ballooned up to 188 pounds. Within a year to two year time frame, I had gained 73 pounds. Seventy three pounds.
Along with the weight gain, and side effects of the steroids my joints became brittle, and arthritic. I am so so happy that I had established a fantastic doctor/patient relationship, and took myself off the steroids with my doctor’s approval. I was in a weird place in my life, and was so frustrated with everything that once I safely tapered off my meds, I stopped seeing my physician. Maybe it was part of me not wanting to accept what this disease was doing to my body, maybe it was the frustration of the nasty side effects of every single medication used to treat Crohn’s, and not wanting to admit it to myself that I needed it. Either way, I parted ways with my physician, and went without seeing a GI doc for close to a year. I slowly lost the first fifteen pounds, in that year, and felt that I felt pretty darn good.
At the end of 2013, my symptoms came back with a vengeance. Knowing what I do now about the disease, I was fortunate to most likely be in remission during the time I was without medical care. Sadly to say that is no longer the case. This time around, with a new doctor, we went over a treatment plan. I adamantly refused to take any form of steroid, which my doctor respected. I had also developed severe inflammation and swelling of my liver, which is typically only worsened by steroids, which made the argument much easier. Pending scopes, I was to start Humira if my disease was active, which of course it was. My weight has been slowly dropping, which I am partly okay with. I also have had to deal with gallbladder issues and surgery, which has definitely wreaked havoc in my body. In six weeks we are going to re-evaluate, and go from there.
Part of me is a bit hesitant to lose more weight. Though I am not a hundred percent comfortable or confident in my own skin at this time, I feel that by holding onto an extra few pounds I will be safe if and when another flare up comes, or this one worsens. It is such f-ed up logic (excuse my language), but it is the absolute truth. By having more weight to lose, the less likely I will be to become underweight, or as severely malnourished as I was before. This way, I can lose twenty pounds and still be “healthy”.
Ideally, I would love to be 145. I have five weeks before I can resume physical activities and exercising which I am eager to start. I just don’t know where I want to draw the line. I know weight is only a number, and people all over social media are all about “non-scale victories” but much to my chagrin, doctors and health care professionals do not care about “non-scale victories”. They care about numbers, and the antiquated BMI charts. They care about pounds, ounces and kilograms. It is a battle I will never win, but I will do what makes me feel the best regardless of the numbers.
Monday, April 21, 2014
pockets full of demons.
I've gone a bit stir crazy these past few days, and will be returning to work tomorrow, thank goodness. I am hoping to ease into things, and put in a half day, and see where it takes me.
I'm a terrible patient. Maybe it comes from my years of bed rest and recovery from my brain injury, or my italian stubbornness, but I do horribly when it comes to bed rest. Granted, there are days when I cannot leave bed due to pain, and weakness, but as soon as I can physically start walking, I'm up and moving. I find that the longer I sit, or lay around, the more I start to have issues with my mind. As I have mentioned previously, I have PTSD, OCD, anxiety and depression thrown in for fun. My little demons have played quite nicely the past few years, but love to come out from hiding as soon as I'm home alone, or inside too long. My demons hate distractions. As soon as I start working, moving around physically, just anything to keep busy, they go back into their hidey holes. It is such a childish analogy, but it's the best explanation I have.
I managed to take a half mile walk today, which sent the little demons running. I'm hoping that by slowly easing back into work, even if just for a few hours, they retreat further into their caves. I must promise myself not to over do it though, and will listen to my body (not my little demons). I'll let y'all know how it goes.
I'm a terrible patient. Maybe it comes from my years of bed rest and recovery from my brain injury, or my italian stubbornness, but I do horribly when it comes to bed rest. Granted, there are days when I cannot leave bed due to pain, and weakness, but as soon as I can physically start walking, I'm up and moving. I find that the longer I sit, or lay around, the more I start to have issues with my mind. As I have mentioned previously, I have PTSD, OCD, anxiety and depression thrown in for fun. My little demons have played quite nicely the past few years, but love to come out from hiding as soon as I'm home alone, or inside too long. My demons hate distractions. As soon as I start working, moving around physically, just anything to keep busy, they go back into their hidey holes. It is such a childish analogy, but it's the best explanation I have.
I managed to take a half mile walk today, which sent the little demons running. I'm hoping that by slowly easing back into work, even if just for a few hours, they retreat further into their caves. I must promise myself not to over do it though, and will listen to my body (not my little demons). I'll let y'all know how it goes.
Saturday, April 19, 2014
day four
Well it's already been four days since my surgery. I look and feel about seven months pregnant at this point- my stomach/abdomen is so swollen and bruised. I think I went into this being a bit too optimistic. Granted, it could have gone worse, but I didn't fully expect to be this sore, swollen and out of it.
I really don't know how the surgery went or how things looked, because I don't remember talking to my surgeon after it. My mom briefly spoke to her, but also doesn't remember, so I have to just wait and see what she has to say at my follow up appointment. I do know that I have two extra incisions (most laparoscopic gallbladder surgery involves 4 incisions, and I have six).
I am also quite anxious to hear the results of my liver biopsies, but again I just have to be patient and wait. In the meantime, I will nap.
I really don't know how the surgery went or how things looked, because I don't remember talking to my surgeon after it. My mom briefly spoke to her, but also doesn't remember, so I have to just wait and see what she has to say at my follow up appointment. I do know that I have two extra incisions (most laparoscopic gallbladder surgery involves 4 incisions, and I have six).
I am also quite anxious to hear the results of my liver biopsies, but again I just have to be patient and wait. In the meantime, I will nap.
Wednesday, April 9, 2014
Work/Life/Crohn's Balance
I love my job. I have found not only work that I am passionate about, but an amazing group of coworkers. I have found a job that is flexible, understanding and accepting.
In previous workplaces, I've had issues with missing time due to illness, countless doctor's visits and well inability to work. In the US, our sick time/leave system (for the most part), blows. Unless you are severely incapacitated or permanently disabled, there are few safety mechanisms, and legal safeguards for those with temporary illnesses, injuries or disabilities that are not lifestanding. After trials and tribulations of the legal system with my traumatic brain injury, I learned that in the US, there is often this grey abyss between becoming dependent on lifelong SSI benefits, and being a healthy fully functional employee. For those illnesses which are "invisible" this grey abyss turns into fifty shades of grey abyss, mountains and plateaus.
Crohn's Disease, and UC are not straight forward in any logical manner. Every single person is affected differently, in terms of ability, capability and "dis"ability. Just in the year of being diagnosed with Crohn's, I have developed gallbladder and liver disease. Does every indivual with Crohn's develop these issues? Absolutely not. While there are more common complications, Crohn's, as well as UC are both far from being understood from a biologic sense. With Crohn's, there are some general complications, but so little is unterstood to make vast generalizations when it comes to long term, typical sequelae.
Still with me? At this point, complicated should be my middle name...
I'll use myself as a perfect example. I'm 25, single and female. I have a history of a traumatic brain injury, and do qualify for reasonable workplace accommodations (as I did through out school), such as fancy computer screens due to my vision issues, extended time for testing, ergonomic chairs, and adaptive equipment for my neuromuscular issues (at this time, in my current job, I have taken advantage of none of the above). I developed Crohn's a few years ago. Crohn's, like traumatic brain injuries, is too protected by the ADA act, for it is a physical impairment of the digestive system, and can impair one or more major life activities. That's fannnnntastic. But what does it mean in terms of reasonable accomendations? Close access to a restroom? The possibility to telecommute?
Keep in mind that ADA is only valid in those workplaces with 15 or greater employees.
I work for the state government, which has thousands of employees, and am also supported by a vocal union. Two years ago, in order to support myself, I found work waitressing at a small family owned restaurant. My employer did not provide sick time. My employer did not provide health benefits, and how on earth how was I to telecommute to waitressing, at a workplace not required to comply with the ADA. At the time, I was searching for other jobs, but was struggling due to the economy, my limited job skills, and unfinished degree. Was I able to work most days? Absolutely. Those days that I did miss to illness though, were uncompensated and I was lectured numerous times of missing too much work.
This is real life. I'm extremely grateful I am at a job, with unlimited sick days, 22 paid medical leave days, and 22 paid vacation days per year. This is a miracle in itself. For the other 1.4 million Americans living with Crohn's disease, this is not a reality. For a time I toyed with the idea of looking into SSI. I could not support myself with work, yet as many of those with Crohn's, knew I could work given the right accommodations and support. Unfortunately, I am an oddity. I have found a loving, nurturing workplace that will help, but my heart breaks for those who struggle daily with providing for themselves, and their families. The "system" is so disheartening.
In previous workplaces, I've had issues with missing time due to illness, countless doctor's visits and well inability to work. In the US, our sick time/leave system (for the most part), blows. Unless you are severely incapacitated or permanently disabled, there are few safety mechanisms, and legal safeguards for those with temporary illnesses, injuries or disabilities that are not lifestanding. After trials and tribulations of the legal system with my traumatic brain injury, I learned that in the US, there is often this grey abyss between becoming dependent on lifelong SSI benefits, and being a healthy fully functional employee. For those illnesses which are "invisible" this grey abyss turns into fifty shades of grey abyss, mountains and plateaus.
Crohn's Disease, and UC are not straight forward in any logical manner. Every single person is affected differently, in terms of ability, capability and "dis"ability. Just in the year of being diagnosed with Crohn's, I have developed gallbladder and liver disease. Does every indivual with Crohn's develop these issues? Absolutely not. While there are more common complications, Crohn's, as well as UC are both far from being understood from a biologic sense. With Crohn's, there are some general complications, but so little is unterstood to make vast generalizations when it comes to long term, typical sequelae.
Still with me? At this point, complicated should be my middle name...
I'll use myself as a perfect example. I'm 25, single and female. I have a history of a traumatic brain injury, and do qualify for reasonable workplace accommodations (as I did through out school), such as fancy computer screens due to my vision issues, extended time for testing, ergonomic chairs, and adaptive equipment for my neuromuscular issues (at this time, in my current job, I have taken advantage of none of the above). I developed Crohn's a few years ago. Crohn's, like traumatic brain injuries, is too protected by the ADA act, for it is a physical impairment of the digestive system, and can impair one or more major life activities. That's fannnnntastic. But what does it mean in terms of reasonable accomendations? Close access to a restroom? The possibility to telecommute?
Keep in mind that ADA is only valid in those workplaces with 15 or greater employees.
I work for the state government, which has thousands of employees, and am also supported by a vocal union. Two years ago, in order to support myself, I found work waitressing at a small family owned restaurant. My employer did not provide sick time. My employer did not provide health benefits, and how on earth how was I to telecommute to waitressing, at a workplace not required to comply with the ADA. At the time, I was searching for other jobs, but was struggling due to the economy, my limited job skills, and unfinished degree. Was I able to work most days? Absolutely. Those days that I did miss to illness though, were uncompensated and I was lectured numerous times of missing too much work.
This is real life. I'm extremely grateful I am at a job, with unlimited sick days, 22 paid medical leave days, and 22 paid vacation days per year. This is a miracle in itself. For the other 1.4 million Americans living with Crohn's disease, this is not a reality. For a time I toyed with the idea of looking into SSI. I could not support myself with work, yet as many of those with Crohn's, knew I could work given the right accommodations and support. Unfortunately, I am an oddity. I have found a loving, nurturing workplace that will help, but my heart breaks for those who struggle daily with providing for themselves, and their families. The "system" is so disheartening.
Sunday, April 6, 2014
Slice and Dice
Finally have a date for surgery.. It looks like I will be cut open April 16th (11 days). I do have to go for more pre-op testing, including bloodwork, X-rays and an ultrasound, so the date may change. One of the biggest issues thus far is that my GI, whom I love, is located about an hour and forty five minutes away (close to my parents house). My sister(who has GI issues) also seems the same doc which is one of the reasons I have yet to change. Also, my doc has a major Crohn's and Colitis research center attached to his practice, which is the most important reason why I have not left his practice yet. With Crohn's, it is so incredibly important to have a physician whom is interested in research, and that stays up to date. Considering I have only had the disease for about two years, and am on the last medicinal treatment option available, I need someone who is involved with clinical trials and new procedures.
This is going to be my first major surgery, associated with Crohn's. There is a lovely "fact" or statement from the CCFA that states that up to 75% of those with Crohn's will require surgery. Though this exact surgery is not on my bowels/intestines, I would not be needing this surgery if I didn't have Crohn's.
I will be saying goodbye to my gallbladder and some of my liver.. Typically this is all done laparoscopically but my surgeon feels that she will most likely do it through an open surgery due to an increased risk of bowel perforation.
This is going to be my first major surgery, associated with Crohn's. There is a lovely "fact" or statement from the CCFA that states that up to 75% of those with Crohn's will require surgery. Though this exact surgery is not on my bowels/intestines, I would not be needing this surgery if I didn't have Crohn's.
I will be saying goodbye to my gallbladder and some of my liver.. Typically this is all done laparoscopically but my surgeon feels that she will most likely do it through an open surgery due to an increased risk of bowel perforation.
Sunday, March 30, 2014
So in a lovely turn of events in the past two weeks, I am now prepping for an upcoming surgery. My gallbladder, thanks to chronic inflammation, is no longer functioning and must come out. I ended up in the emergency room 2 weeks ago, with a slightly abnormal ultrasound. I was then discharged and released and told to follow up with a HIDA scan to see how well my gallbladder was functioning. Lucky for me, I had no stones, but after the HIDA scan found out that my ejection fraction was under 10%. My doctor prefers surgery for anyone with a scan under 38% so... Yeah I definitely make the cut for that one.
I'm meeting with a surgeon tomorrow. One of the things my GI doc is concerned about is taking multiple liver biopsies as well as doing a biopsy of the tumor on my liver while in there. He also gave me a fair warning that I may be forced to do an open surgery rather then laparoscopically due to severity of my Crohn's and the close proximity of the diseased intestine to the gallbladder, which increases the risk of complications.
Fingers crossed tomorrow will go well, and it can get in quickly for surgery. I'm at my wits end and can't deal with the lack of sleep much longer.
I'm meeting with a surgeon tomorrow. One of the things my GI doc is concerned about is taking multiple liver biopsies as well as doing a biopsy of the tumor on my liver while in there. He also gave me a fair warning that I may be forced to do an open surgery rather then laparoscopically due to severity of my Crohn's and the close proximity of the diseased intestine to the gallbladder, which increases the risk of complications.
Fingers crossed tomorrow will go well, and it can get in quickly for surgery. I'm at my wits end and can't deal with the lack of sleep much longer.
Wednesday, March 12, 2014
march
March is always a special month to me. March is Brain Injury Awareness Month. This past December, I celebrated the ten year anniversary of my TBI. Why would I celebrate that type of event?! To me, it is like celebrating a birth date. Most people are only lucky enough to have one birthday, a brand new beginning. In my case, I had a second beginning at life. I know I'm taking an extremely terrible event and just molding it into something semi-positive, but that is how I have been able to cope with it.
I've gotten to the point, where the only times I mention my TBI, is if I'm having an off day, or have medical visits related to it. I feel that without experiencing a brain injury, I would not be able to cope so well with my Crohn's. I have been living with an un-curable, "silent" illness for so long before my Crohn's diagnosis that once it was added into the mix, nothing substantially changed. Maybe that is why I have so much acceptance to my diagnosis. I have learned that asking "Why me?" is not going to change the illness, or the diagnosis.
It is also difficult to be active in both causes. Working in public health, I have a passion for advocacy. Crohn's is supported by the wonderful Crohn's and Colitis Foundation of America. Traumatic Brain Injuries are supported by both the Brain Injury Alliance of NJ (where I reside) and the Brain Injury Association of America. I feel pulled to be apart of both, yet time-wise it has been difficult. I am going to try the best I can to advocate, to raise awareness, to fundraise, and to speak of both. I can't, and won't choose between the two illnesses, since they both play equally important roles in my life.
I've gotten to the point, where the only times I mention my TBI, is if I'm having an off day, or have medical visits related to it. I feel that without experiencing a brain injury, I would not be able to cope so well with my Crohn's. I have been living with an un-curable, "silent" illness for so long before my Crohn's diagnosis that once it was added into the mix, nothing substantially changed. Maybe that is why I have so much acceptance to my diagnosis. I have learned that asking "Why me?" is not going to change the illness, or the diagnosis.
It is also difficult to be active in both causes. Working in public health, I have a passion for advocacy. Crohn's is supported by the wonderful Crohn's and Colitis Foundation of America. Traumatic Brain Injuries are supported by both the Brain Injury Alliance of NJ (where I reside) and the Brain Injury Association of America. I feel pulled to be apart of both, yet time-wise it has been difficult. I am going to try the best I can to advocate, to raise awareness, to fundraise, and to speak of both. I can't, and won't choose between the two illnesses, since they both play equally important roles in my life.
Thursday, March 6, 2014
Round Two
Took the second part of my loading dose of Humira, this past weekend, a couple of days early. I was at my mom's for an overnight visit, and wanted to inject with someone at home, in case I screwed up. I know this means I also majorly screwed up my schedule, but also wanted to change my injection day. The first injection was done on a Wednesday. The next two days at work (Thurs. and Fri.) I felt like death, and so run down. This time, I injected on Saturday, and felt like death Sunday and Monday. I'm hoping to adjust to Fridays, so I have the weekend to recoup. It's a tough decision... Do I really want to waste my weekend feeling like crap, or do I want to barely be able to function two days at work?
So far in two and a half weeks, I've lost ten pounds. Humira has yet to catch up with this flare. As my lovely GI once stated, I rather you live consistently a little chubby, so that during flares, you don't get deathly ill. I've been thankfully? Holding onto an extra 20 pounds from prednisone/Entocort, so I have something to lose.
The irony of the disease is never lost on me. The disease eats away at your core, your body literally fighting to survive. Then the steroids, which help your body, go above and beyond their duty and produce side effects that are worse then disease. Damned if you do, damned if you don't.
Coworkers, friends and family constantly complimenting on how great you look, how much weight you lost, yet you barely have enough energy to stand up. "Wouldn't it be nice to lose weight that fast" or "I wish I had Crohn's to lose weight". WTF.
I will fight this. I will try harder, not to let this disease consume me, neither my body nor brain.
So far in two and a half weeks, I've lost ten pounds. Humira has yet to catch up with this flare. As my lovely GI once stated, I rather you live consistently a little chubby, so that during flares, you don't get deathly ill. I've been thankfully? Holding onto an extra 20 pounds from prednisone/Entocort, so I have something to lose.
The irony of the disease is never lost on me. The disease eats away at your core, your body literally fighting to survive. Then the steroids, which help your body, go above and beyond their duty and produce side effects that are worse then disease. Damned if you do, damned if you don't.
Coworkers, friends and family constantly complimenting on how great you look, how much weight you lost, yet you barely have enough energy to stand up. "Wouldn't it be nice to lose weight that fast" or "I wish I had Crohn's to lose weight". WTF.
I will fight this. I will try harder, not to let this disease consume me, neither my body nor brain.
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