This week I got a cold. This is bad news for an immunosuppressed person since it's not only easier for you to get sick, but also harder for you to fight off. So on Monday, as the first signs of a sore throat were kicking in, I attempted to smother any growing cold bugs with copious amounts of hot tea, zinc gluconate (Cold- Eeze), and sleep. Unfortunately, none of my little home remedies worked and I woke up the next morning with a full blown sore throat. There was a slight fracas as I had to call and tell the infusion center I was sick, and they then had to verify that I could continue my treatments with my doctor. But in the end, it was decided that it was fine to continue on with my regularly scheduled protocol. Phew! I really didn't want to have to stop anything just because of a stupid sore throat.
As a result of all this, getting sick felt like a personal failure. At my first chemo treatment I was handed a packet on precautions to take in order to prevent getting sick - which I thought I followed to the letter. I got a flu shot, I washed my hands constantly, I avoided getting too close to other people, I sanitized things with a little packet of disinfecting wipes... I resolved to do better at keeping up my germ fighting techniques since apparently some had broken through my defenses.
With this in mind, I strolled into Whole Foods that afternoon and as usual, grabbed a disinfectant wipe from next to the cart area and began to wipe off the handle. I'm not sure if I looked extra intense about my cleaning or something but for whatever reason, a germ terrorist decided to target me that day. Just as I was turning to throw away my wipe and walk on to do my shopping some random dude slapped his hand down on the freshly wiped handle and smirked. I stood there confused for a moment. Surely that guy didn't just do that on purpose? Maybe he thought my cart was his cart? I eventually regained my composure and asked "Did you just touch my cart after I cleaned it?". He nodded and continued to smirk as he walked away.
I should remind you all that I am on daily prednisone at the moment, one of the side effects of which is mood swings. I've never had any sort of steroid-induced rage experience thus far but I think what followed may have been my first one. I'm normally not an aggressive person but I wanted to punch this guy in the face very badly. Instead I decided to try for public embarrassment by walking after him and loudly explaining that he was a total jerk for doing something like that to an immunosuppressed patient on chemotherapy who has to be mindful of germs for serious health reasons. At least a few people in our vicinity turned to stare at him and I felt vindicated even though the dirt-bag didn't look the least bit sorry. Meanwhile my non-confrontational little brother had quietly slipped away with our cart and was trying to pretend he didn't know me. I guess he thought I was going to do something worse than just yell at the guy.
Some people are so rude. Keep your germs to yourself people!
This post is dedicated to my little brother. Sorry for being an embarrassing sister!
Wednesday, September 28, 2011
Saturday, September 17, 2011
Can't I have a disease with a pretty name?
Vainly, I have wished for a more "elegant" sounding disorder but alas, I am stuck with the clunky syllables of cicatricial pemphigoid. Read: sick-a-trish-ul pempf-eh-goid. I suppose that the complex name does lend me an air of mystery though. Often people look at me with a mixture of confusion and awe (as if I've suddenly switched to speaking in Chinese) when I tell them what I have. Now that you know how to pronounce it, you can experience this too!
As I mentioned in my first post, what I have is pretty rare. It affects all races equally but like many autoimmune disorders, it is more common in women. The age of onset is generally older (about 50-60) but I seem to have gotten lucky because we think my first symptoms began to appear at about 15, although it wasn't until college that the symptoms worsened enough to become a real problem. This disorder is also known as mucous membrane pemphigoid, which means it affects... you guessed it! Mucous membranes. Essentially, your immune system turns against you and can attack these membranes in your eyes, mouth, larynx, pharynx, esophagus, etc. I consider myself fortunate in a way because I could be so much worse off if I had more areas of involvement. Currently, I seem to have only or mostly ocular involvement, and so for the purposes of this blog, that is what I am going to focus on.
The ocular manifestations of cicatricial pemphigoid can lead to blindness if not treated. This begins with chronic conjunctivitis, scarring of the conjunctiva, eyelid positioning issues, dryness, and vision loss. In case you don't know what the conjunctiva is, it's the membrane that covers your eyeball and inner eyelids. You need it, and your lacrimal glands (which make the watery part of your tears) to be healthy in order to properly lubricate and protect your eye, and allow you to see. I have all of the ocular symptoms but I personally feel that the dryness/vision loss is by far the worst. Dry eyes can be extremely painful, and not being able to see well is not only annoying, but also really debilitating. My dry eye/vision loss is pretty severe right now because I currently have a great deal of inflammation. But I hope that with treatment, I can get the inflammation under control, get my sight back to normal, and get my tear production going again! At the moment, my eyes are so dry that I can't cry anymore. It's actually kind of amusing to see what happens when I try. My eyes just turn bright red (or at least a brighter red then their currently constant medium red state) and get really sore with the apparently tremendous effort of attempting to squeeze out wetness from their parched depths. As a result, I have added crying to the list of things that I never expected to miss.
Treatment for cicatricial pemphigoid involves suppressing your immune system with chemotherapy, possibly in combination with steroids (used to control inflammation quickly). This is why the sooner it is caught, the better. The faster you get your immune system under control, the less overall damage is done and the fewer symptoms/problems you will have. Unfortunately, the disease is so rare and getting a positive biopsy is so tricky, that it is often quite difficult to diagnose. I have had firsthand experience with this. I had the ocular symptoms of the disorder for years but had five negative biopsies, and so I was given the diagnosis of chronic cicatrizing conjuctivitis (which is a fancy way to say your eyes are messed up and we don't know why). I sat like that for a long while - being monitored, but getting worse. I suspected that I had cicatricial pemphigoid based on my symptoms. It is well known that the biopsies have a high false negative rate and so at every appointment I tried to push to get started on some treatment plan, fearing that the longer I waited the worse off I would be. I was of the opinion that my symptoms were so indicative of pemphigoid that it would be far worse to let the disease progress than to start treatment, especially since I didn't trust my negative biopsies one bit. Unfortunately, my doctor was reluctant to proceed at that point and so eventually, my symptoms did worsen. As a patient, sometimes the way you wish to attack your illness will not match up with the way your doctor treats and thinks. These things happen and when they do, I suggest going for a second opinion.
This is exactly what I did when my eyes suddenly got worse and my doctor was still unable to give me a diagnosis or new treatment plan (other than eye drops). I went immediately for a second opinion with another ocular immunologist, Dr. Stephen Foster. Dr. Foster did a sixth biopsy, using a different, more sophisticated analytical technique and lo and behold, I was diagnosed! I tell you all this story because if you are reading this out there and you have started to have symptoms of dry eye and conjuctival scarring of unknown origin, GO SEE DR. FOSTER. Go see him right now. He is the guy to go to for the ocular manifestations of disorder and many other ocular diseases and I appreciate that he will start treating patients even without a positive biopsy of pemphigoid if he feels their symptoms match up.
If I could be granted one wish, it would be to have been diagnosed earlier. I wish I had been referred to Dr. Foster, or known to ask for a repeat biopsy analyzed using an immmunoperoxidase technique sooner. It's slightly upsetting to me to acknowledge this because for about five years, it was the one regret I knew I didn't want to have. Often I have to tell myself that I really did everything I could at the time. I thought I was seeing basically the only expert for the disease and so when I doubted the handling of my case, I didn't know better than to think "well, I'm not the specialist." I know for a fact that if I hadn't worked as hard as I did to get diagnosed and treated, I would be far worse off and never would have found Dr. Foster on my own. I do take some small comfort in that. I shudder to think of what would have happened to me had I not already had an interest in medicine (I want to be a doctor) because my fascination made it second nature for me to read all the papers and studies I could about my symptoms. As a result, I was a fairly well-informed patient and this helped me to be really proactive about searching for a diagnosis and having the surgeries that I needed to along the way. Knowing how seriously debilitating my symptoms could become was also the motivation for me to immediately seek out the best care that I could. Despite my deterioration under the care of the first doctor I saw, both ocular immunologists who looked at my case are regarded as the foremost experts in this disease, both connected with very well-known and reputable research institutions.
Though my efforts weren't able to save me from getting to stage 3 of the ocular disease (out of 4 - untreatable), I hope that writing about all of this might help someone else to get diagnosed earlier. Please, if you think you may have the symptoms of this disease, feel free to contact me with questions. I am not a medical expert, but I can help point you in the right direction for care. In the meantime, Ophthalmalogic Manifiestations of Cicatricial Pemphigoid is a great first online resource.
As horrible as it is to be sick, I like to imagine that maybe the reason for all of this was to make me into a better or more motivated physician one day. Who knows? Maybe I'll go into ophthalmology. Maybe I'll help cure dry eye! Wouldn't that be a cute story.
This post is dedicated to medicine and to my good fortune. If I'd been born without access to good medical care and research, I have no doubt I would be blind. And then where would this blog be!? I can only blow up the font size on my computer so much...
As I mentioned in my first post, what I have is pretty rare. It affects all races equally but like many autoimmune disorders, it is more common in women. The age of onset is generally older (about 50-60) but I seem to have gotten lucky because we think my first symptoms began to appear at about 15, although it wasn't until college that the symptoms worsened enough to become a real problem. This disorder is also known as mucous membrane pemphigoid, which means it affects... you guessed it! Mucous membranes. Essentially, your immune system turns against you and can attack these membranes in your eyes, mouth, larynx, pharynx, esophagus, etc. I consider myself fortunate in a way because I could be so much worse off if I had more areas of involvement. Currently, I seem to have only or mostly ocular involvement, and so for the purposes of this blog, that is what I am going to focus on.
The ocular manifestations of cicatricial pemphigoid can lead to blindness if not treated. This begins with chronic conjunctivitis, scarring of the conjunctiva, eyelid positioning issues, dryness, and vision loss. In case you don't know what the conjunctiva is, it's the membrane that covers your eyeball and inner eyelids. You need it, and your lacrimal glands (which make the watery part of your tears) to be healthy in order to properly lubricate and protect your eye, and allow you to see. I have all of the ocular symptoms but I personally feel that the dryness/vision loss is by far the worst. Dry eyes can be extremely painful, and not being able to see well is not only annoying, but also really debilitating. My dry eye/vision loss is pretty severe right now because I currently have a great deal of inflammation. But I hope that with treatment, I can get the inflammation under control, get my sight back to normal, and get my tear production going again! At the moment, my eyes are so dry that I can't cry anymore. It's actually kind of amusing to see what happens when I try. My eyes just turn bright red (or at least a brighter red then their currently constant medium red state) and get really sore with the apparently tremendous effort of attempting to squeeze out wetness from their parched depths. As a result, I have added crying to the list of things that I never expected to miss.
Treatment for cicatricial pemphigoid involves suppressing your immune system with chemotherapy, possibly in combination with steroids (used to control inflammation quickly). This is why the sooner it is caught, the better. The faster you get your immune system under control, the less overall damage is done and the fewer symptoms/problems you will have. Unfortunately, the disease is so rare and getting a positive biopsy is so tricky, that it is often quite difficult to diagnose. I have had firsthand experience with this. I had the ocular symptoms of the disorder for years but had five negative biopsies, and so I was given the diagnosis of chronic cicatrizing conjuctivitis (which is a fancy way to say your eyes are messed up and we don't know why). I sat like that for a long while - being monitored, but getting worse. I suspected that I had cicatricial pemphigoid based on my symptoms. It is well known that the biopsies have a high false negative rate and so at every appointment I tried to push to get started on some treatment plan, fearing that the longer I waited the worse off I would be. I was of the opinion that my symptoms were so indicative of pemphigoid that it would be far worse to let the disease progress than to start treatment, especially since I didn't trust my negative biopsies one bit. Unfortunately, my doctor was reluctant to proceed at that point and so eventually, my symptoms did worsen. As a patient, sometimes the way you wish to attack your illness will not match up with the way your doctor treats and thinks. These things happen and when they do, I suggest going for a second opinion.
This is exactly what I did when my eyes suddenly got worse and my doctor was still unable to give me a diagnosis or new treatment plan (other than eye drops). I went immediately for a second opinion with another ocular immunologist, Dr. Stephen Foster. Dr. Foster did a sixth biopsy, using a different, more sophisticated analytical technique and lo and behold, I was diagnosed! I tell you all this story because if you are reading this out there and you have started to have symptoms of dry eye and conjuctival scarring of unknown origin, GO SEE DR. FOSTER. Go see him right now. He is the guy to go to for the ocular manifestations of disorder and many other ocular diseases and I appreciate that he will start treating patients even without a positive biopsy of pemphigoid if he feels their symptoms match up.
If I could be granted one wish, it would be to have been diagnosed earlier. I wish I had been referred to Dr. Foster, or known to ask for a repeat biopsy analyzed using an immmunoperoxidase technique sooner. It's slightly upsetting to me to acknowledge this because for about five years, it was the one regret I knew I didn't want to have. Often I have to tell myself that I really did everything I could at the time. I thought I was seeing basically the only expert for the disease and so when I doubted the handling of my case, I didn't know better than to think "well, I'm not the specialist." I know for a fact that if I hadn't worked as hard as I did to get diagnosed and treated, I would be far worse off and never would have found Dr. Foster on my own. I do take some small comfort in that. I shudder to think of what would have happened to me had I not already had an interest in medicine (I want to be a doctor) because my fascination made it second nature for me to read all the papers and studies I could about my symptoms. As a result, I was a fairly well-informed patient and this helped me to be really proactive about searching for a diagnosis and having the surgeries that I needed to along the way. Knowing how seriously debilitating my symptoms could become was also the motivation for me to immediately seek out the best care that I could. Despite my deterioration under the care of the first doctor I saw, both ocular immunologists who looked at my case are regarded as the foremost experts in this disease, both connected with very well-known and reputable research institutions.
Though my efforts weren't able to save me from getting to stage 3 of the ocular disease (out of 4 - untreatable), I hope that writing about all of this might help someone else to get diagnosed earlier. Please, if you think you may have the symptoms of this disease, feel free to contact me with questions. I am not a medical expert, but I can help point you in the right direction for care. In the meantime, Ophthalmalogic Manifiestations of Cicatricial Pemphigoid is a great first online resource.
As horrible as it is to be sick, I like to imagine that maybe the reason for all of this was to make me into a better or more motivated physician one day. Who knows? Maybe I'll go into ophthalmology. Maybe I'll help cure dry eye! Wouldn't that be a cute story.
This post is dedicated to medicine and to my good fortune. If I'd been born without access to good medical care and research, I have no doubt I would be blind. And then where would this blog be!? I can only blow up the font size on my computer so much...
Wednesday, September 14, 2011
Girl With One Eye
So here we go with my very first blog post! I'm not really sure where to start this off so I guess I'll just describe the motivation behind this and all future ramblings. I am 24 and was recently diagnosed with an autoimmune disease - cicatricial pemphigoid (also called mucous membrane pemphigoid). Being sick is scary, but sometimes it's just hilarious. I hope to document my experiences with this disorder so that other people who are suffering from the same disease have a chance of stumbling across my writings and will maybe not feel quite so alone, quite so confused, and hopefully end up a little cheerier. Additionally, the sooner this condition is diagnosed and treated, the better off you are. It's pretty rare, but I know others out there will get this in the future, or maybe already are in the beginning stages. I hope that my little blog will play some small part in helping these people to be diagnosed as soon as possible.
Of course, if you end up reading for other reasons, I welcome you as well! I hope that I provide some amusing insights into what life with an illness is like and remind you all not to sweat the small stuff.
That's all for now. Soon to come, a short description of cicatrical pemphigoid and a recap of how I got to where I am today.
Today's blog was brought to you by Jo's right eyeball! Picking up the slack of the currently useless left one, which is being squeezed shut as I type. Thank you evolution, for giving me two eyes.
Of course, if you end up reading for other reasons, I welcome you as well! I hope that I provide some amusing insights into what life with an illness is like and remind you all not to sweat the small stuff.
That's all for now. Soon to come, a short description of cicatrical pemphigoid and a recap of how I got to where I am today.
Today's blog was brought to you by Jo's right eyeball! Picking up the slack of the currently useless left one, which is being squeezed shut as I type. Thank you evolution, for giving me two eyes.
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