How many times have you seen those commercials that used to play incessantly about prescription drugs, and the guy's voice comes on at the end for 15 seconds of the fastest listing of side effects ever? My friend Chad and I used to laugh at those -- "I took this pill for diarrhea...and I died." It was funny and not at the same time, since both of us have chronic illnesses which make meds a part of our daily life.
First, let me say, that I am grateful for my meds for my ulcerative colitis. I think I've mentioned before that I was extremely ill, and a few years ago when I finally got the right stuff it has made ALL the difference in my life. I mean, I'm actually functioning really, really well most of the time. Stoked! Unfortunately, in my case (and I'm only something like .000001% of the population where this occurs) I have a significant side effect from the meds. Low platelets and low white blood cells. I mean, really low - I get to the "bleed to death" threshold. I have a hematologist/oncologist who tracks them. At first they thought I had leukemia and told me in a very off-hand way that was what was suspected. Within a few weeks, then confirming it over the next several months with regular and constant blood work, they have guessed instead that it's the meds since technically it's a side effect...even though it's extremely rare. Rare doesn't mean never. So, I've been living with this reality for several years.
The symptoms started with unexplained bruising. It's crazy - my neck, torso, under my arms, inside my thighs....not places one bumps into things. They just show up. I later found out this type of spontaneous bruising is indicative of low counts. I watch myself now, if I see bruising starting I know I'm low. And really, now I can feel it, something off within me when the counts drop. It's a trip, being in tune with my body and understanding it, but I need to in order to stay alive. I also have to watch how it looks - does it seem normal? darker? larger? if so, off to the hospital....and trying not to fall down on my way over so I don't bleed to death there on the spot.
I also get these weird little red dots on my skin. I used to see these when I would have a flare up before I was on the meds. My doctor at the time (who didn't know I had UC) said they were age spots. I thought that was weird not only because I was only in my early 30's at the time, but they would come and go. I later found out they are called petechiae, which basically are small pinpoint hemorrhages of the skin. They aren't bumpy, they look like red freckles. They appear, and then go away. I'm also only an infinitesimal of those who get that as well. I get them when I have a flare up and when my counts drop.
What can be done? Well, my hematologist wants me off my meds. My gastroenterologist says I can't do anything different with them due to the severity of my illness and I just need to deal with it. She suggested no skateboarding or other things where I might crack myself open when my counts are low. They even battled it out over the phone; that was fun. The both have my well-being at heart. I tried reducing the dose on my own as a compromise, but I got sick again. So, all I can do it just know myself, watch for the signs, and make good choices during the times when my life is more fragile.
Friday, May 14, 2010
Sunday, May 2, 2010
Disclosure: Telling others that it won't go away
I've been thinking a lot lately about disclosure. Disclosure about being sick, about having something chronic, about something new popping into the picture and how to talk about it. I've been dealing with this recently with the onset of a problem with my lungs. Frankly, it's something that freaks me out way more than all of my other chronic illnesses combined. My dad had COPD and my mom is currently in late stages of it. They were both smokers, my mom is now on full-time oxygen. I watched my dad die from pneumonia but his lungs were damaged from the COPD. I guess it scares me the most because there isn't an option to just remove the lungs, whereas some of my other illnesses, if push comes to shove, I can take things out. It's scary not being able to get my breath, the one thing we all need to be able to do. Hmph.
I feel guilty telling anyone about it. It's like, 'what else??' Not that anyone has said that, but it's how I feel inside. I've mentioned it to a few close friends, but I've confided the depth of my fear to only a very select few. Maybe I'm superstitious, that if I really say how scared I am that it makes it more real, or manifests it in some way. I have one friend who periodically asks me how I'm doing, and I just tell him that I'm choosing to think happy thoughts....basically, I do a 90 degree turn away from the conversation. I'm building little walls around myself, keeping everyone at a distance. I think if I really let it go I'll completely fall apart. I don't fall apart easily. Maybe it's all the voices in my head I remember from people telling me how strong I am. I don't feel so strong right now, and I don't want to disappoint them.
All of this gets into a bigger picture about how to tell someone you're sick. Chronically sick. My best friends are always there. Most of my other friends understand. My lovers usually freak out. Some people just ignore it. The truth is, at some point anyone in my life has to know to some degree. It impacts my ability to travel, to make plans or see them through, to lead a normal life much of the time. If I don't disclose, the absence of the truth makes it worse for those being impacted....they figure I'm a flake, or I don't want to see them, or worse. It's a burden on everyone who knows. But it's the right thing to do in the end. As hard as it may be, it also lifts the weight a little from me with every person I tell, once I find the way to do it. That's a small part of what friends are for.
I feel guilty telling anyone about it. It's like, 'what else??' Not that anyone has said that, but it's how I feel inside. I've mentioned it to a few close friends, but I've confided the depth of my fear to only a very select few. Maybe I'm superstitious, that if I really say how scared I am that it makes it more real, or manifests it in some way. I have one friend who periodically asks me how I'm doing, and I just tell him that I'm choosing to think happy thoughts....basically, I do a 90 degree turn away from the conversation. I'm building little walls around myself, keeping everyone at a distance. I think if I really let it go I'll completely fall apart. I don't fall apart easily. Maybe it's all the voices in my head I remember from people telling me how strong I am. I don't feel so strong right now, and I don't want to disappoint them.
All of this gets into a bigger picture about how to tell someone you're sick. Chronically sick. My best friends are always there. Most of my other friends understand. My lovers usually freak out. Some people just ignore it. The truth is, at some point anyone in my life has to know to some degree. It impacts my ability to travel, to make plans or see them through, to lead a normal life much of the time. If I don't disclose, the absence of the truth makes it worse for those being impacted....they figure I'm a flake, or I don't want to see them, or worse. It's a burden on everyone who knows. But it's the right thing to do in the end. As hard as it may be, it also lifts the weight a little from me with every person I tell, once I find the way to do it. That's a small part of what friends are for.
Sunday, April 11, 2010
The Beginning of Chronic Illness: or, How I Ignored It
Since I last wrote I've been busy spending time with my friends. One thing having a chronic illness has taught me is the importance of time, of being with those I love and telling them every moment how much they mean to me. You never know when it might all end.
As promised in an earlier post, here's how it all began. It started when I was about 14 with stomach problems. Now, when I say "stomach" what I really mean is "gastrointestinal issues" ....you get the drift. It started in high school about the time my parents divorce was in full swing and I was admittedly pretty screwed up. The doctors all said it was nerves, or related to my period. I'd have terrible, painful bouts of diarrhea. Yuck. They decided to call it irritable bowel syndrome (IBS), although they never did any testing to see if it was anything else. The medical establishment often says "you're too young for it to be anything too serious." Yeah, right. By the time I was around 20 it was still bad, and I went through a series of testing for both lower and upper GI issues - sigmoidoscopy, barium enemas, colonoscopy....I lost track of everything they checked. They eventually decided it was ulcerative colitis. Unfortunately, I was apparently in a bad space and either didn't remember what they said or it didn't mean anything to me. So I did nothing about it.
So, as expected, I was still sick off and on - well, more on than off I'd say. I'd often chalk it up to stress, or hormone issues, or something I ate, or.....the list goes on. I eventually listened to a doctor I had that was trying to case manage all of my issues and started a calendar. I wrote down every day how I felt, what I took for it, what I ate, what I drank...everything. I did this for six months. When I looked at the information, I could clearly see patterns around certain kinds of food, certain times of the month, that seemed to make it worse. This was a HUGE step for me. It finally gave me some control over it, some idea of what I had and how I could manage it myself. I wish I had done it sooner, but better late than never. This was a big step in the right direction. Unfortunately, it would take several more years for a diagnosis. Because I had also been diagnosed with endometriosis several years prior after two laparoscopies, as well as interstitial cystitis after the birth of my son, it wasn't easy for the doctors to determine what was doing what to my body. It became a process of elimination.
The first thing to go was the uterus - actually, it was a full total abdominal hysterectomy (TAH)...that means the uterus, ovaries, cervix, and anything else fun that they find. They did it abdominally in order to clean me out as well as possible. Endometriosis can sit in a variety of places in the body, and in my case it was on several organs. They also found out when they got in there that my uterus has collapsed onto my colon. Apparently this is all genetic, but I didn't know it at the time. So, out it all went. I was 33.
I was good for about a year after the hysterectomy, then the stomach issues started again. This is when I began the calendar I mentioned earlier. Then there was more testing, and another colonscopy with multiple biopsies, resulting in the diagnosis (again) of ulcerative colitis with indeterminate crohn's disease. This is also genetic in my family - which I also didn't know until my uncle mentioned it to my mom right after my diagnosis. This finally led me to finding the correct treatment...well, after the first doctor put me on the wrong meds (dipentum, which is for upper colon) and another doctor got me on the right ones. It's been about five years now on the new meds (Asacol) and I actually feel like I have a life now. A big part of that remains managing the illness, how I feel, what I eat...all that stuff. I have to take the meds religiously - 9 pills a day. I thank the universe every day for my health insurance - the pills would be upwards of $1000 per month. I get them for a $5 co-pay.
Even when managing this illness, mostly what I think about is how grateful I am for every day I have. And, how especially grateful for those days when the pain isn't severe. As I look back on it, sometimes I'm pissed off at how long it took to get it under control, years wasted. The longer UC is untreated the greater likelihood of being surgical - that is, having the colon (or parts of it) removed. Maybe I just wasn't ready to know, or understand way back when. I do know that it's shaped my life, made me a better person because I don't take anything, not one second, for granted. In everything, there can be a positive - you just have to look for it.
As promised in an earlier post, here's how it all began. It started when I was about 14 with stomach problems. Now, when I say "stomach" what I really mean is "gastrointestinal issues" ....you get the drift. It started in high school about the time my parents divorce was in full swing and I was admittedly pretty screwed up. The doctors all said it was nerves, or related to my period. I'd have terrible, painful bouts of diarrhea. Yuck. They decided to call it irritable bowel syndrome (IBS), although they never did any testing to see if it was anything else. The medical establishment often says "you're too young for it to be anything too serious." Yeah, right. By the time I was around 20 it was still bad, and I went through a series of testing for both lower and upper GI issues - sigmoidoscopy, barium enemas, colonoscopy....I lost track of everything they checked. They eventually decided it was ulcerative colitis. Unfortunately, I was apparently in a bad space and either didn't remember what they said or it didn't mean anything to me. So I did nothing about it.
So, as expected, I was still sick off and on - well, more on than off I'd say. I'd often chalk it up to stress, or hormone issues, or something I ate, or.....the list goes on. I eventually listened to a doctor I had that was trying to case manage all of my issues and started a calendar. I wrote down every day how I felt, what I took for it, what I ate, what I drank...everything. I did this for six months. When I looked at the information, I could clearly see patterns around certain kinds of food, certain times of the month, that seemed to make it worse. This was a HUGE step for me. It finally gave me some control over it, some idea of what I had and how I could manage it myself. I wish I had done it sooner, but better late than never. This was a big step in the right direction. Unfortunately, it would take several more years for a diagnosis. Because I had also been diagnosed with endometriosis several years prior after two laparoscopies, as well as interstitial cystitis after the birth of my son, it wasn't easy for the doctors to determine what was doing what to my body. It became a process of elimination.
The first thing to go was the uterus - actually, it was a full total abdominal hysterectomy (TAH)...that means the uterus, ovaries, cervix, and anything else fun that they find. They did it abdominally in order to clean me out as well as possible. Endometriosis can sit in a variety of places in the body, and in my case it was on several organs. They also found out when they got in there that my uterus has collapsed onto my colon. Apparently this is all genetic, but I didn't know it at the time. So, out it all went. I was 33.
I was good for about a year after the hysterectomy, then the stomach issues started again. This is when I began the calendar I mentioned earlier. Then there was more testing, and another colonscopy with multiple biopsies, resulting in the diagnosis (again) of ulcerative colitis with indeterminate crohn's disease. This is also genetic in my family - which I also didn't know until my uncle mentioned it to my mom right after my diagnosis. This finally led me to finding the correct treatment...well, after the first doctor put me on the wrong meds (dipentum, which is for upper colon) and another doctor got me on the right ones. It's been about five years now on the new meds (Asacol) and I actually feel like I have a life now. A big part of that remains managing the illness, how I feel, what I eat...all that stuff. I have to take the meds religiously - 9 pills a day. I thank the universe every day for my health insurance - the pills would be upwards of $1000 per month. I get them for a $5 co-pay.
Even when managing this illness, mostly what I think about is how grateful I am for every day I have. And, how especially grateful for those days when the pain isn't severe. As I look back on it, sometimes I'm pissed off at how long it took to get it under control, years wasted. The longer UC is untreated the greater likelihood of being surgical - that is, having the colon (or parts of it) removed. Maybe I just wasn't ready to know, or understand way back when. I do know that it's shaped my life, made me a better person because I don't take anything, not one second, for granted. In everything, there can be a positive - you just have to look for it.
Tuesday, April 6, 2010
The Day After: Taking On Chronic Illness
Well, really it's two days after because I just wasn't up to writing yesterday. That's one of the most maddening bits about being sick - all the things I have to set aside for a later time. I've learned to be okay with it because there is no other choice. It's taught me patience...profound patience. It's also taught me to really enjoy the moments when I feel well ('well' being a relative term). Of course, I also tend to pack everything in at once. I did a research paper years ago with a friend on the intersections of disability, race and sexual orientation. One of the things we learned from those we interviewed who had a chronic illness was a need to make up for lost time and well as a tendency to overcompensate in almost all areas. It wasn't a surprise, but instead showed me what I already knew. To hear others say the same thing was comforting; sometimes we just need to know we're not as alone as we feel with whatever illness we have. I didn't realize how many others had UC until I started being open to talking about it. It's amazing what you can learn, the support you can find as well as give.
One of the things I want to share today is the importance of really taking on a chronic illness. In the end, there isn't anyone who can help you as much as you can help yourself. Understand what you have going on for you, challenge the doctors, take the bull by the horns and do everything you can to not give in to the despair that may try to drag you down. I was told over 10 years ago that I'd never work again, that I could just lay around taking Vicodin until my time finally came. I believed it for about six months...then I said to myself "screw this, if I'm only around a little while longer I don't want it to be this way" and I got myself off the pain meds, started taking control over what was happening and really started living. No, it wasn't easy and I don't mean to imply that in any way. It did, however, lead me to much better health care and medication that is finally working. I know that is not the case for everyone by any stretch of the imagination. I guess what I'm just trying to say is - don't give in. Fight it. Live every day and every moment in the most present way possible and believe. It makes all the difference.
One of the things I want to share today is the importance of really taking on a chronic illness. In the end, there isn't anyone who can help you as much as you can help yourself. Understand what you have going on for you, challenge the doctors, take the bull by the horns and do everything you can to not give in to the despair that may try to drag you down. I was told over 10 years ago that I'd never work again, that I could just lay around taking Vicodin until my time finally came. I believed it for about six months...then I said to myself "screw this, if I'm only around a little while longer I don't want it to be this way" and I got myself off the pain meds, started taking control over what was happening and really started living. No, it wasn't easy and I don't mean to imply that in any way. It did, however, lead me to much better health care and medication that is finally working. I know that is not the case for everyone by any stretch of the imagination. I guess what I'm just trying to say is - don't give in. Fight it. Live every day and every moment in the most present way possible and believe. It makes all the difference.
Sunday, April 4, 2010
Easter and Beginnings: Sharing my Story of Chronic Illness
I've been thinking about starting this for a while, and somehow this dreary Easter day seems to be the beginning. I've been asked more times than I can count about how I've handled all the things that life has thrown at me. And, one of the pieces that seems to baffle folks the most is how I manage to live with several chronic illnesses. Frankly, I only have my perspective about it and I've never known any different. Being healthy isn't something that's been in the cards for me. But I've learned a lot over the years, and it remains a constant in my life. So, I'm here to share it for others, maybe it will help someone else - and maybe help me through some bad days in the process.
So, lets just start with the diagnoses to get them out of the way: ulcerative colitis with indeterminate crohn's disease (first diagnosis approximately 1989, second in 2005 - more on that in a later blog), interstitial cystitis (diagnosis 1997), chronic costochondritis (diagnosis approx. 2005), and endometriosis (diagnosis approx. 1998). I think that's it, except for the newest thing affecting my lungs but I'm choosing denial on that one right now.
Today, let's start with a little education about the one that is my most constant friend: ulcerative colitis. If you have a weak stomach for frank talk about medical issues, you might want to stop reading here, for today anyway. For those who don't know what it is, a good website is here: http://www.ccfa.org/ Ulcerative colitis (UC) is a chronic disease of the colon, or large intestine. The disease is marked by inflammation and ulceration of the colon mucosa, or innermost lining. Tiny open sores, or ulcers, form on the surface of the lining, where they bleed and produce pus and mucus. There are no areas of normal intestine between the areas of diseased intestine.
Lovely, right? I know.
In UC there is a hyper response by the immune system - basically the body thinks food and other particles shouldn't be in the intestines so it attacks by sending white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. Ouch.
Symptoms often include bloody stool, crampy abdominal pain and severe urgency to have a bowel movement. Diarrhea, loss of appetite and subsequent weight loss are common, as is fatigue. In cases of severe bleeding, anemia may also occur. In addition, there may be nausea, fever, skin lesions, joint pain, eye inflammation, and liver disorders.
There is no cure, but there are a variety of treatments out there. I use Asacol, which has been pretty successful for me so far in the bigger picture of things. I try to avoid steroids even though they are recommended because you basically only have a few shots to use them before they don't work - then you're surgical. I like to keep my options open as long as possible.
As I alluded to at the beginning, today has been a bad UC day. I've had a lot of pain and severe fatigue. Nausea has been almost constant. So, I snuggled up on the couch with a fire going next to me, lots of water, and am just riding it out. That's all I can do at the moment. Oh, and I started this blog. So, that's progress. Tomorrow may or may not be better, but we'll continue this journey together.
So, lets just start with the diagnoses to get them out of the way: ulcerative colitis with indeterminate crohn's disease (first diagnosis approximately 1989, second in 2005 - more on that in a later blog), interstitial cystitis (diagnosis 1997), chronic costochondritis (diagnosis approx. 2005), and endometriosis (diagnosis approx. 1998). I think that's it, except for the newest thing affecting my lungs but I'm choosing denial on that one right now.
Today, let's start with a little education about the one that is my most constant friend: ulcerative colitis. If you have a weak stomach for frank talk about medical issues, you might want to stop reading here, for today anyway. For those who don't know what it is, a good website is here: http://www.ccfa.org/ Ulcerative colitis (UC) is a chronic disease of the colon, or large intestine. The disease is marked by inflammation and ulceration of the colon mucosa, or innermost lining. Tiny open sores, or ulcers, form on the surface of the lining, where they bleed and produce pus and mucus. There are no areas of normal intestine between the areas of diseased intestine.
Lovely, right? I know.
In UC there is a hyper response by the immune system - basically the body thinks food and other particles shouldn't be in the intestines so it attacks by sending white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. Ouch.
Symptoms often include bloody stool, crampy abdominal pain and severe urgency to have a bowel movement. Diarrhea, loss of appetite and subsequent weight loss are common, as is fatigue. In cases of severe bleeding, anemia may also occur. In addition, there may be nausea, fever, skin lesions, joint pain, eye inflammation, and liver disorders.
There is no cure, but there are a variety of treatments out there. I use Asacol, which has been pretty successful for me so far in the bigger picture of things. I try to avoid steroids even though they are recommended because you basically only have a few shots to use them before they don't work - then you're surgical. I like to keep my options open as long as possible.
As I alluded to at the beginning, today has been a bad UC day. I've had a lot of pain and severe fatigue. Nausea has been almost constant. So, I snuggled up on the couch with a fire going next to me, lots of water, and am just riding it out. That's all I can do at the moment. Oh, and I started this blog. So, that's progress. Tomorrow may or may not be better, but we'll continue this journey together.
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