First published on April 2, 2012 at 4:55 p.m.
The waiting game continues. My primary doctor has decided that I need to start talking to the Infectious Disease people downtown. She was able to squeeze me in to their offices for an appointment early Wednesday morning. No news other than that, unfortunately. Mayo Clinic is still a looming possibility, but I think I may have another MRI and a handful a blood draws to do up here before that (just hoping for no more spinal taps!). Really my only other update is that I decided to work on my taxes today, because I usually give Laura Hayes a heart attack every year this time of year by not starting my taxes until the day they're due, but she's already stressed out by my Mystery Illness so I decided not to subject her to a double-serving of Worries ;) Hopefully some (good) news comes out of my appointment with the disease people on Wednesday! ♥
Friday, April 13, 2012
The Mystery Illness Diaries: Living in Limbo
First published on March 30, 2012 at 4:36 p.m.
The Mystery Illness is now causing multiple doctors, neurologists, pathologists, and more to remark that my case is "incredibly interesting." So interesting, in fact, that they still have no idea what's going on. I just got off the phone with my awesome primary doctor (the one who I feel is really advocating for me) and she said that most of the blood draws they ran on Wednesday have come back negative (I am WAY too used to hearing this type of news). A few still won't be done until Monday but she said what was most "interesting" was my test looking for levels of Inflammation. She told me today that when my PA initially ran it a few weeks ago, I had slightly elevated levels of Inflammation, but back then my levels were at a 16 and apparently anything under 20 is okay. Above 50 is pretty bad news. According to the samples I gave this week, my Inflammation Level is now at a 97. The test doesn't tell you what causes the inflammation, but the pathologists said that whatever-it-was-they-were-looking-at-under-the-microscope (I'm not great with doctor lingo) looked really "interesting" and possibly infectious and/or maybe probably viral in nature. What does this mean? That they need to re-test me for a slew of stuff they already tested me for before... I'm not sure how to explain that, it confuses me, but for example, apparently they tested me for Lyme's Disease THIS certain way, but they did not bother to check for it in This, That, or The Other certain way, so they can no longer totally rule out Lyme's. Same with MS. My MRI came back looking GREAT I was told, but apparently they only MRIed me one certain way and to truly rule out MS they should have MRIed/tested me in these other fives ways too, which they didn't. And when they Spinal Tapped me, they only tested for mono, cancer, MS, Lyme's, and all this other stuff ONE way, but to TRULY rule all of that out, they really should have ran about a dozen extra tests on my spinal fluid. Which they didn't. Not only did they NOT test my spinal fluid in all of these different multitudes of ways, they threw it out already. As for our old friend Guillain–Barré Syndrome? Two neurologists said I had it. Two said I did not. Now? Could go either way, because "interestingly" enough, they (you guessed it) tossed my spinal fluid without running every possible test for it. The only thing she is sure that it is not is meningitis. So, I weakly grin and declare that to be Good News :) Oh! And she is also 100% sure it is NOT stress. So the neurologist who told me I was perfectly healthy and just needed to go find a therapist can officially suck it ♥. These last few days have been pretty rough - I'm frustrated and exhausted. Not having answers is gross. Limbo is not a place I like to be. The words "Mayo" and "Clinic" have been tossed around a bit, but the locals are not quite ready to send me down to The Big Dance. At this point I'm really willing to go anywhere to find some answers. However, in spite of all of this uncertainty there are still positives, and I sort of have to cling to those. Firstly, my spinal headaches seem to have left the building, and this is about the greatest gift ever ♥. Secondly, in the face of all of these re-tests, my doctor is trying really hard to NOT have to have me get another spinal tap. She doesn't want me to have to go through that roller coaster again unless totally necessary, and that is very comforting to me :) The greatest thing of all is that she said that I can try taking "gentle walks," as long as I generally continue to get lots of rest and take it easy. I have really despised all of the sitting and laying down I have had to do lately. It bums me out as much as Not Knowing bums me out. The thought of taking a delicious walk is instantly uplifting. Even if my walk is going to be short and stumbley and accessorized with my sweet ass cane. Maybe I'll dress the part, go find some really Granny-Fabulous looking shawls and bandanas to wrap around my head. I've got some old-timey skirts that could really do the trick ;) For now I'm going to hit the showers, go pick up what is probably my last pay check for quite a while, and then seek out some of my friendsies in an attempt to inject a degree of normalcy into my stagnant routine. Thank you for following my updates, and thank you for all of the encouragement. It is definitely needed now more than ever ♥.
The Mystery Illness is now causing multiple doctors, neurologists, pathologists, and more to remark that my case is "incredibly interesting." So interesting, in fact, that they still have no idea what's going on. I just got off the phone with my awesome primary doctor (the one who I feel is really advocating for me) and she said that most of the blood draws they ran on Wednesday have come back negative (I am WAY too used to hearing this type of news). A few still won't be done until Monday but she said what was most "interesting" was my test looking for levels of Inflammation. She told me today that when my PA initially ran it a few weeks ago, I had slightly elevated levels of Inflammation, but back then my levels were at a 16 and apparently anything under 20 is okay. Above 50 is pretty bad news. According to the samples I gave this week, my Inflammation Level is now at a 97. The test doesn't tell you what causes the inflammation, but the pathologists said that whatever-it-was-they-were-looking-at-under-the-microscope (I'm not great with doctor lingo) looked really "interesting" and possibly infectious and/or maybe probably viral in nature. What does this mean? That they need to re-test me for a slew of stuff they already tested me for before... I'm not sure how to explain that, it confuses me, but for example, apparently they tested me for Lyme's Disease THIS certain way, but they did not bother to check for it in This, That, or The Other certain way, so they can no longer totally rule out Lyme's. Same with MS. My MRI came back looking GREAT I was told, but apparently they only MRIed me one certain way and to truly rule out MS they should have MRIed/tested me in these other fives ways too, which they didn't. And when they Spinal Tapped me, they only tested for mono, cancer, MS, Lyme's, and all this other stuff ONE way, but to TRULY rule all of that out, they really should have ran about a dozen extra tests on my spinal fluid. Which they didn't. Not only did they NOT test my spinal fluid in all of these different multitudes of ways, they threw it out already. As for our old friend Guillain–Barré Syndrome? Two neurologists said I had it. Two said I did not. Now? Could go either way, because "interestingly" enough, they (you guessed it) tossed my spinal fluid without running every possible test for it. The only thing she is sure that it is not is meningitis. So, I weakly grin and declare that to be Good News :) Oh! And she is also 100% sure it is NOT stress. So the neurologist who told me I was perfectly healthy and just needed to go find a therapist can officially suck it ♥. These last few days have been pretty rough - I'm frustrated and exhausted. Not having answers is gross. Limbo is not a place I like to be. The words "Mayo" and "Clinic" have been tossed around a bit, but the locals are not quite ready to send me down to The Big Dance. At this point I'm really willing to go anywhere to find some answers. However, in spite of all of this uncertainty there are still positives, and I sort of have to cling to those. Firstly, my spinal headaches seem to have left the building, and this is about the greatest gift ever ♥. Secondly, in the face of all of these re-tests, my doctor is trying really hard to NOT have to have me get another spinal tap. She doesn't want me to have to go through that roller coaster again unless totally necessary, and that is very comforting to me :) The greatest thing of all is that she said that I can try taking "gentle walks," as long as I generally continue to get lots of rest and take it easy. I have really despised all of the sitting and laying down I have had to do lately. It bums me out as much as Not Knowing bums me out. The thought of taking a delicious walk is instantly uplifting. Even if my walk is going to be short and stumbley and accessorized with my sweet ass cane. Maybe I'll dress the part, go find some really Granny-Fabulous looking shawls and bandanas to wrap around my head. I've got some old-timey skirts that could really do the trick ;) For now I'm going to hit the showers, go pick up what is probably my last pay check for quite a while, and then seek out some of my friendsies in an attempt to inject a degree of normalcy into my stagnant routine. Thank you for following my updates, and thank you for all of the encouragement. It is definitely needed now more than ever ♥.
The Mystery Illness Diaries: A Good Doctor in My Corner
First published on March 29, 2012 at 12:29 p.m.
I believe that I have finally connected with a doctor that can help me figure all of this craziness out! ♥ Physically, nothing much has changed as far as my numbness/weakness goes. BUT. My heart feels SO GOOD and light and free after my hospital follow up appointment with my primary doctor today! And that can seriously make so, SO much of a difference ♥. My primary doctor is awesome but she is really hard to get in to see - she's usually booked 1-2 months in advance. So when things started to get super scary (the Walgreen's Incident) I started seeing a really great PA in West Duluth (who turned out to be AWESOME and a great advocate for me) because he was the only person in the network available immediately after my Walgreen's scare. And he has been super great - even calling me in the hospital to see how I was doing ♥. However, throughout my crazy week in the hospital, getting incredibly expensive treatments for a syndrome that two neurologists now say I do not have, there was a lot of talk that my primary doctor should have been orchestrating my care plans from the beginning. My dad agreed and was actually pretty mad about that whole angle, but I was able to see her today, and I am SO glad she's in the mix of things now. This afternoon I filled her in on pretty much everything that has been happening since Sunday, March 4th, aka Day One. When I got to the part where the neurologist said that I was perfectly healthy, did not have Guillain–Barré Syndrome, and was probably just suffering from stress, her immediate response was "NO. No, no, no, NO. I do not accept that. There is more to this than that. I do not accept that that is all that is going on here. I don't know WHAT'S going on here, but we are going to get to the bottom of this. And we are NOT simply going to chalk this up to you having a series of bad days." That was exactly what I wanted to hear from the person in charge of directing my health care plan! I'm sure the neurologist I saw on Monday is great when it comes to his area of expertise, but I felt incredibly blown off and dismissed when he just sort of announced, "You don't have Guillain–Barré Syndrome. No need to have any more follow ups. You are perfectly healthy and just need to learn how to handle stress. Make an appointment with a psychiatrist." Okay, I KNOW that stress really can be a killer and can absolutely manifest itself physically in your body in terrible ways. I am NOT at all down playing that. And hey! I think therapy is a great thing, and I'm sure just about every person in the world would benefit from a lil' therapy here and there. We all have our mommy-issues. BUT. The idea that this was nothing more than me not having enough positive outlets in my life was NOT satisfactory to me. Not at ALL. I wanted to yell "Don't you dare just Pontius Pilot me!" (get it?!) but at that point I was still reeling from the relentless spinal-tap-brain-fluid-leaking headaches and was more focused on not puking. Good god those awful headaches can really suck the life out of you. Like, worse than Harry Potter-style dementors. And I am SO happy to report that, on the headache front, life has gotten a million times better ever since they put that blood patch on my leaky spine-hole! I still have minor head aches when I move certain ways (bending over is daaaaangerous!) but they are nothing like the face melting headaches I was getting before. My doctor told me that from what I was reporting, the blood patch was probably doing its job, and that while mild headaches could possibly still arise for another week, they would be nothing that a little OTC meds couldn't handle. Hands down the best news of the day ♥. Anywho, back to my Mystery Illness. My doctor ordered a bunch of new labs to be run (how is that I am not yet used to getting needled every other day? Does anyone ever really get used to it? Still not my favorite thing...) and saw some "interesting" things regarding the protein levels that came out of my spinal tap. Things that hadn't been examined more closely the first time around. Now, she (and I) still don't really have any idea what's been making me loose the strength in my legs, but just having her on top of it really brings me so much relief. Almost as much relief as figuring out what this is will bring me. We ended my appointment with a quick run to the lab, as well as to Physical Therapy, where I started the process of getting regular PT sessions set up in order to help me retain the strength that I currently do still have in my legs, etc. I asked her if I needed to set up appointments with a psychiatrist, and she said no, that she has "definitely seen people come in with problems that will work themselves out with the right therapist. But this is not that situation. You can certainly talk with a therapist if ever you want to, but I do NOT believe that stress is the source of these particular problems. I have seen cases like that - it does happen - but this is not that situation." Again, I think therapy is a great and wonderful thing and can really help a person live a well balanced life. And I have no problem accepting the fact that certain stressors in my life probably did not help out my current medical predicament. What I have a problem with was how I felt that the neurologist used "stress" as more of a blow-off answer than anything else. And it is very validating to hear that my primary doctor is of the same mind. I'm hoping to get more answers when my labs come back. And so, we're back to wishing and hoping and praying that whatever this is is easily treated and will not leave any permanent damage behind. As always, finding hope in little things really helps pass the time. My dad says he thinks that I am moving around with my sweet-ass cane much better than I was last week. That is a positive :) The blood patch working? That is a HUGE positive. And my friends and family are the biggest positive(s) of all ♥. When I was readmitted to the hospital on Monday and Tuesday, I had such wonderful visits from Tara and her friend, Kristin (who snuck over to the hospital on her BREAK), the fabulous Cole, and of course Sarah and Robin (I was SO lucky to have you two wonderful ladies working on my floor! ♥). Today I also received wonderfully lovely and thoughtful cards from Suzey & Big Toby, the wonderful Katy Stech, and a bag full of goodies and love from my other family, The Moroffs ♥. Thank you so much to all of you, and to all of you who read my posts and send me love. It's physical therapy for the soul ♥.
P.S. Yes, I agree with all of you who have wished we could sic House on this case :) And I am really happy that "Guy On A Buffalo" has brought as much joy to many of your lives as it brought me during my stay in the hospital, hahaha :) I shall now re-post it below for everyone's viewing pleasure! ♥
I believe that I have finally connected with a doctor that can help me figure all of this craziness out! ♥ Physically, nothing much has changed as far as my numbness/weakness goes. BUT. My heart feels SO GOOD and light and free after my hospital follow up appointment with my primary doctor today! And that can seriously make so, SO much of a difference ♥. My primary doctor is awesome but she is really hard to get in to see - she's usually booked 1-2 months in advance. So when things started to get super scary (the Walgreen's Incident) I started seeing a really great PA in West Duluth (who turned out to be AWESOME and a great advocate for me) because he was the only person in the network available immediately after my Walgreen's scare. And he has been super great - even calling me in the hospital to see how I was doing ♥. However, throughout my crazy week in the hospital, getting incredibly expensive treatments for a syndrome that two neurologists now say I do not have, there was a lot of talk that my primary doctor should have been orchestrating my care plans from the beginning. My dad agreed and was actually pretty mad about that whole angle, but I was able to see her today, and I am SO glad she's in the mix of things now. This afternoon I filled her in on pretty much everything that has been happening since Sunday, March 4th, aka Day One. When I got to the part where the neurologist said that I was perfectly healthy, did not have Guillain–Barré Syndrome, and was probably just suffering from stress, her immediate response was "NO. No, no, no, NO. I do not accept that. There is more to this than that. I do not accept that that is all that is going on here. I don't know WHAT'S going on here, but we are going to get to the bottom of this. And we are NOT simply going to chalk this up to you having a series of bad days." That was exactly what I wanted to hear from the person in charge of directing my health care plan! I'm sure the neurologist I saw on Monday is great when it comes to his area of expertise, but I felt incredibly blown off and dismissed when he just sort of announced, "You don't have Guillain–Barré Syndrome. No need to have any more follow ups. You are perfectly healthy and just need to learn how to handle stress. Make an appointment with a psychiatrist." Okay, I KNOW that stress really can be a killer and can absolutely manifest itself physically in your body in terrible ways. I am NOT at all down playing that. And hey! I think therapy is a great thing, and I'm sure just about every person in the world would benefit from a lil' therapy here and there. We all have our mommy-issues. BUT. The idea that this was nothing more than me not having enough positive outlets in my life was NOT satisfactory to me. Not at ALL. I wanted to yell "Don't you dare just Pontius Pilot me!" (get it?!) but at that point I was still reeling from the relentless spinal-tap-brain-fluid-leaking headaches and was more focused on not puking. Good god those awful headaches can really suck the life out of you. Like, worse than Harry Potter-style dementors. And I am SO happy to report that, on the headache front, life has gotten a million times better ever since they put that blood patch on my leaky spine-hole! I still have minor head aches when I move certain ways (bending over is daaaaangerous!) but they are nothing like the face melting headaches I was getting before. My doctor told me that from what I was reporting, the blood patch was probably doing its job, and that while mild headaches could possibly still arise for another week, they would be nothing that a little OTC meds couldn't handle. Hands down the best news of the day ♥. Anywho, back to my Mystery Illness. My doctor ordered a bunch of new labs to be run (how is that I am not yet used to getting needled every other day? Does anyone ever really get used to it? Still not my favorite thing...) and saw some "interesting" things regarding the protein levels that came out of my spinal tap. Things that hadn't been examined more closely the first time around. Now, she (and I) still don't really have any idea what's been making me loose the strength in my legs, but just having her on top of it really brings me so much relief. Almost as much relief as figuring out what this is will bring me. We ended my appointment with a quick run to the lab, as well as to Physical Therapy, where I started the process of getting regular PT sessions set up in order to help me retain the strength that I currently do still have in my legs, etc. I asked her if I needed to set up appointments with a psychiatrist, and she said no, that she has "definitely seen people come in with problems that will work themselves out with the right therapist. But this is not that situation. You can certainly talk with a therapist if ever you want to, but I do NOT believe that stress is the source of these particular problems. I have seen cases like that - it does happen - but this is not that situation." Again, I think therapy is a great and wonderful thing and can really help a person live a well balanced life. And I have no problem accepting the fact that certain stressors in my life probably did not help out my current medical predicament. What I have a problem with was how I felt that the neurologist used "stress" as more of a blow-off answer than anything else. And it is very validating to hear that my primary doctor is of the same mind. I'm hoping to get more answers when my labs come back. And so, we're back to wishing and hoping and praying that whatever this is is easily treated and will not leave any permanent damage behind. As always, finding hope in little things really helps pass the time. My dad says he thinks that I am moving around with my sweet-ass cane much better than I was last week. That is a positive :) The blood patch working? That is a HUGE positive. And my friends and family are the biggest positive(s) of all ♥. When I was readmitted to the hospital on Monday and Tuesday, I had such wonderful visits from Tara and her friend, Kristin (who snuck over to the hospital on her BREAK), the fabulous Cole, and of course Sarah and Robin (I was SO lucky to have you two wonderful ladies working on my floor! ♥). Today I also received wonderfully lovely and thoughtful cards from Suzey & Big Toby, the wonderful Katy Stech, and a bag full of goodies and love from my other family, The Moroffs ♥. Thank you so much to all of you, and to all of you who read my posts and send me love. It's physical therapy for the soul ♥.
P.S. Yes, I agree with all of you who have wished we could sic House on this case :) And I am really happy that "Guy On A Buffalo" has brought as much joy to many of your lives as it brought me during my stay in the hospital, hahaha :) I shall now re-post it below for everyone's viewing pleasure! ♥
The Mystery Illness Diaries: JUST KIDDING, Except It's Not Funny
First published on March 27, 2012 at 11:48 p.m.
Things have taken a bit of an... interesting turn? I came home from the hospital on Saturday night and was struggling with a bit of nausea and headaches throughout Sunday. By Monday (yesterday) I was in so much pain from the headaches I was puking. Some of my friends and I joked that, because I had never in my life had a headache before, maybe I was really just having minor baby-headaches that my body couldn't handle only because it had never had to deal with them before. Well, puking out of my dad's car door on my way to my first neurologist follow-up appointment yesterday sort of put that theory to bed. When I finally got to talk to a neurologist, he looked at my charts and asked why I hadn't had any nerve-shock tests before. "Beats me, I'm not a doctor, and besides that sounds miserable" was the reply that went through my head. Well, my instinct was right on, because after getting a shot in my ass to numb the pain in my head and the nausea in my stomach, I had to sit through a series of INCREDIBLY painful shock tests for a full hour where they literally shock you about as high as you can stand it so that they can measure how your nerves react. And then, to add to the fun, they did this test where they put needles in my muscles and wiggled them around and made me flex and stuff. Miserable is sort of an understatement. Thank god I had my dad there the whole time, but I think watching me scream and cry non-stop might have been even harder on him than it was on me. And after all was said and done - this is the kicker - the neurologist called in another neurologist and after studying my results they both informed me that I DO NOT HAVE Guillain–Barré Syndrome. Like, not at all. Like, maybe never had it. Like, spent six days in the hospital getting treatment for something that they are now saying I do not have. I burst into tears and the neurologist looked at me like I was crazy and said "Cory, why are you crying! This is GOOD news! You don't have any nerve damage, you should be happy!" And while he was right, I replied "Yeah, but at least when I was diagnosed with Guillain–Barré Syndrome, we knew what was wrong with me and that I could get 100% better." To which HE replied, "Who told you such a thing? Between 5-10% of people with Guillain–Barré Syndrome NEVER recover!" Oh man... gotta love brutally honest doctors, I guess :) Well, on top of this "interesting" news, my headaches were still unbearable, even with the shot of pain killer. The neurologist thought the head aches were from the spinal tap I had done the Monday PRIOR. Sometimes, when you have a spinal tap, it can not heal properly and you can basically leak out brain/spine juices through your spinal tap hole and then your brain doesn't have enough brain-juice cushioning which can lead to excruciating headaches. While in the hospital, a different neurologist thought the pain came as a response to the IVIg treatments used to fight off the Guillain–Barré Syndrome (that I likely never had). And ANOTHER neurologist thought my headaches were just from stress/muscle tension and spasms. The neurologist I saw yesterday was the one who thought the pain came from the spinal tap, and I was admitted to the hospital again to get a blood bandage over my alleged spine-hole. Basically, I had another needle go into my back but it didn't go as far or as deep as the spinal tap did. The anesthesiologist who did my procedure said it might hurt more than the S-Tap but I actually think it hurt less. After getting a needle in me they drew my own blood from my hand and injected it over where my spinal tap had been done, to sort of cushion/add a bandage over the place where I had my last Spinal Adventure. It wasn't too bad after all was said and done, the procedure went quickly, and the very nice (and cute) anesthesiologist who did the procedure was named Pericles, Perry for short. I asked if he was named after a Greek demi-god and from then on he distracted me with some talk about Greek Mythology which I totally love to geek out on and which helped to take my mind off the fact that I was getting needles put in my spine AGAIN. By the way, in my pain-coma I confused Pericles with Perseus; Pericles (he informed me) was actually a Greek Senator who helped kick of the Hellenic age and stuff. Usually I am MUCH better at keeping my gods, demi-gods, and important Greek senators straight. I blame the drugs I was on ;) Anyway, the very good news is that while I have had some headaches today, they are not NEARLY has bad as they were the day before. I have to hope hope hope that this means the blood patch did its job, and that at least the Case of the Mind-Numbing Skull Throbbies will finally be put to bed. As for whether or not I have Guillain–Barré, I have a follow up appointment with my primary doctor tomorrow. The neurologist I saw yesterday said I was perfectly healthy and that STRESS might be the source of all of these health misfortunes, but I am having a really hard time accepting that as a final answer. I mean, I KNOW that stress can do terrible things to a person, and some parts of my life have been super stressful (work, etc.) lately, but I feel like I've been through worse stress before and never ever did my legs suddenly JUST. STOP. WORKING. So... I'm not sure what to make of it yet. I have a really good primary doctor, and I'm hoping that she can help me get to the bottom of all of this since the neurologist sort of washed his hands of me and pronounced me to be in great nervous health. Which I know is actually a good thing, but what I want is answers. For now though, I concentrate on the little things that are still good. I still have Health Insurance until the end of April (my job doesn't allows medical leave time... that's a whole different story) so no matter what I can see doctors through the end of next month without having to worry. Another great thing is that today I felt very strong while doing my power-laps around the nurses station! My dad actually made me sit down and take a rest, but I was antsy and felt like I could have done another two full laps, haha :) And the best thing of all is that the headaches are no longer making me puke and cry! This really is a blessing. I can handle all of this craziness so much better when the simple act of sitting up doesn't make me un-eat all of my pain meds ;) And even to this day so many of you have been SO great and SO supportive! Hearing that I don't have Guillain–Barré Syndrome after all has been really scary - not knowing is almost worse than knowing sometimes. And sometimes, I haven't always felt as Sunshiny and Dackalicious as I am usually known for being. But your reassurances that I can get through anything with my positivity and smiley heart helps me call that positivity and smiley heart back to the forefront of this weird health battle, even when mixed diagnoses have scared them away for a bit. So THANK YOU, for reminding me that who I am as a person is really the single biggest defense that I have when stuff gets crazy. I know I say this about every time I post, but I do mean it EVERY SINGLE TIME: Thank you, thank you, thank you! For all of your love and support. I know that with you guys keeping me in your thoughts and prayers, I really can get through all of this with ease and peace of mind ♥.
Things have taken a bit of an... interesting turn? I came home from the hospital on Saturday night and was struggling with a bit of nausea and headaches throughout Sunday. By Monday (yesterday) I was in so much pain from the headaches I was puking. Some of my friends and I joked that, because I had never in my life had a headache before, maybe I was really just having minor baby-headaches that my body couldn't handle only because it had never had to deal with them before. Well, puking out of my dad's car door on my way to my first neurologist follow-up appointment yesterday sort of put that theory to bed. When I finally got to talk to a neurologist, he looked at my charts and asked why I hadn't had any nerve-shock tests before. "Beats me, I'm not a doctor, and besides that sounds miserable" was the reply that went through my head. Well, my instinct was right on, because after getting a shot in my ass to numb the pain in my head and the nausea in my stomach, I had to sit through a series of INCREDIBLY painful shock tests for a full hour where they literally shock you about as high as you can stand it so that they can measure how your nerves react. And then, to add to the fun, they did this test where they put needles in my muscles and wiggled them around and made me flex and stuff. Miserable is sort of an understatement. Thank god I had my dad there the whole time, but I think watching me scream and cry non-stop might have been even harder on him than it was on me. And after all was said and done - this is the kicker - the neurologist called in another neurologist and after studying my results they both informed me that I DO NOT HAVE Guillain–Barré Syndrome. Like, not at all. Like, maybe never had it. Like, spent six days in the hospital getting treatment for something that they are now saying I do not have. I burst into tears and the neurologist looked at me like I was crazy and said "Cory, why are you crying! This is GOOD news! You don't have any nerve damage, you should be happy!" And while he was right, I replied "Yeah, but at least when I was diagnosed with Guillain–Barré Syndrome, we knew what was wrong with me and that I could get 100% better." To which HE replied, "Who told you such a thing? Between 5-10% of people with Guillain–Barré Syndrome NEVER recover!" Oh man... gotta love brutally honest doctors, I guess :) Well, on top of this "interesting" news, my headaches were still unbearable, even with the shot of pain killer. The neurologist thought the head aches were from the spinal tap I had done the Monday PRIOR. Sometimes, when you have a spinal tap, it can not heal properly and you can basically leak out brain/spine juices through your spinal tap hole and then your brain doesn't have enough brain-juice cushioning which can lead to excruciating headaches. While in the hospital, a different neurologist thought the pain came as a response to the IVIg treatments used to fight off the Guillain–Barré Syndrome (that I likely never had). And ANOTHER neurologist thought my headaches were just from stress/muscle tension and spasms. The neurologist I saw yesterday was the one who thought the pain came from the spinal tap, and I was admitted to the hospital again to get a blood bandage over my alleged spine-hole. Basically, I had another needle go into my back but it didn't go as far or as deep as the spinal tap did. The anesthesiologist who did my procedure said it might hurt more than the S-Tap but I actually think it hurt less. After getting a needle in me they drew my own blood from my hand and injected it over where my spinal tap had been done, to sort of cushion/add a bandage over the place where I had my last Spinal Adventure. It wasn't too bad after all was said and done, the procedure went quickly, and the very nice (and cute) anesthesiologist who did the procedure was named Pericles, Perry for short. I asked if he was named after a Greek demi-god and from then on he distracted me with some talk about Greek Mythology which I totally love to geek out on and which helped to take my mind off the fact that I was getting needles put in my spine AGAIN. By the way, in my pain-coma I confused Pericles with Perseus; Pericles (he informed me) was actually a Greek Senator who helped kick of the Hellenic age and stuff. Usually I am MUCH better at keeping my gods, demi-gods, and important Greek senators straight. I blame the drugs I was on ;) Anyway, the very good news is that while I have had some headaches today, they are not NEARLY has bad as they were the day before. I have to hope hope hope that this means the blood patch did its job, and that at least the Case of the Mind-Numbing Skull Throbbies will finally be put to bed. As for whether or not I have Guillain–Barré, I have a follow up appointment with my primary doctor tomorrow. The neurologist I saw yesterday said I was perfectly healthy and that STRESS might be the source of all of these health misfortunes, but I am having a really hard time accepting that as a final answer. I mean, I KNOW that stress can do terrible things to a person, and some parts of my life have been super stressful (work, etc.) lately, but I feel like I've been through worse stress before and never ever did my legs suddenly JUST. STOP. WORKING. So... I'm not sure what to make of it yet. I have a really good primary doctor, and I'm hoping that she can help me get to the bottom of all of this since the neurologist sort of washed his hands of me and pronounced me to be in great nervous health. Which I know is actually a good thing, but what I want is answers. For now though, I concentrate on the little things that are still good. I still have Health Insurance until the end of April (my job doesn't allows medical leave time... that's a whole different story) so no matter what I can see doctors through the end of next month without having to worry. Another great thing is that today I felt very strong while doing my power-laps around the nurses station! My dad actually made me sit down and take a rest, but I was antsy and felt like I could have done another two full laps, haha :) And the best thing of all is that the headaches are no longer making me puke and cry! This really is a blessing. I can handle all of this craziness so much better when the simple act of sitting up doesn't make me un-eat all of my pain meds ;) And even to this day so many of you have been SO great and SO supportive! Hearing that I don't have Guillain–Barré Syndrome after all has been really scary - not knowing is almost worse than knowing sometimes. And sometimes, I haven't always felt as Sunshiny and Dackalicious as I am usually known for being. But your reassurances that I can get through anything with my positivity and smiley heart helps me call that positivity and smiley heart back to the forefront of this weird health battle, even when mixed diagnoses have scared them away for a bit. So THANK YOU, for reminding me that who I am as a person is really the single biggest defense that I have when stuff gets crazy. I know I say this about every time I post, but I do mean it EVERY SINGLE TIME: Thank you, thank you, thank you! For all of your love and support. I know that with you guys keeping me in your thoughts and prayers, I really can get through all of this with ease and peace of mind ♥.
The Mystery Illness Diaries: Back in the Hospital
First published on March 26, 2012 at 9:42 p.m.
[Editor's Note: I did not have my laptop when I was readmitted to the hospital, so I had my step-mom log into my facebook account when she returned home to update friends and family on my situation and whereabouts].
Hi. I'm Arna, Cory's mother. She asked me to update you, her friends, to let you know that she's readmitted to the hospital because of her severe headaches. They'll try to do a "blood patch" where they did her spinal tap, hoping that will help. She had more "nerve tests" done today. Still hard to say exactly what is causing all her symptoms. Thanks for all the support, prayers and good humor that you have supported Cory with. Arna
[Editor's Note: I did not have my laptop when I was readmitted to the hospital, so I had my step-mom log into my facebook account when she returned home to update friends and family on my situation and whereabouts].
Hi. I'm Arna, Cory's mother. She asked me to update you, her friends, to let you know that she's readmitted to the hospital because of her severe headaches. They'll try to do a "blood patch" where they did her spinal tap, hoping that will help. She had more "nerve tests" done today. Still hard to say exactly what is causing all her symptoms. Thanks for all the support, prayers and good humor that you have supported Cory with. Arna
The Mystery Illness Diaries: Baby Steps and Granny-Laps
First published on March 24, 2012 at 3:41 p.m.
I should be set to go home today! While I have enjoyed my six-day, five-night stay at the FABULOUS St. Mary's Hospital, complete with a room with a view of Duluth's iconic Copper Top Church adorning the crest of one of our many rolling hills, it will be nice to sleep in my own bed/not be woken up at 5:am to get weighed. I had another brain splitting headache today, which caused me to be fairly comatose throughout the morning. I'm a little nervous about getting these headaches at home, because at home there won't be a nurse ready to inject pain killers into my veins when the throbbing becomes unbearable. Here's hoping the Rx's they prescribed me will yield similar pain-free results. My neurologists warned me that even after receiving my last IVIg treatment today it could still take several weeks to months for the numbness in my hands and feet to subside and for the strength in my legs to come back. Although the extreme six-month projection is a bit daunting, I remain optimistic that I will come out of this thing on the faster end of the spectrum. I mean, I'm pretty lucky in that I made it in here before the Guillain–Barré Syndrome reached my lungs or other major organs... I was told about a boy who had to be hooked up to a ventilator for three entire weeks, and there was also another woman whose Guillain–Barré Syndrome had progressed so far, she was only able to blink her eyes. So yeah, I'm pretty lucky. And by the way, both of those people made a 100% recovery, which is EXACTLY what I am planning on doing ♥. In other news, my last in-patient physical therapy went well today. I practiced climbing up and down stairs, which was pretty exhausting, but at least I can do it. I'm incredibly thankful that I started running last year! The strength I built up in my legs running 5k's, 10k's, and Half-Marathons made my already strong legs even stronger. Now I call upon those reservoirs of strength to do simple things, like getting on and off the toilet without using my arms. And I believe my always-optimistic personality has helped me just as much. I am so happy that we KNOW what is wrong with me, and that I CAN make a 100% comeback, that I never really get frustrated about how hard little things can be. Actually, I think it's sort of funny the way I toddle around with my super sweet cane :) I'm not too worried about how long recovery may take, because I am good at focusing on taking good care of myself one day at a time. I think my running career has also really mentally prepared me for this. I use the same sort of thought process to tackle this as I did on my 14 mile training runs - rather than get overwhelmed by the total length of the run, I would focus on moving my legs one gentle, comfortable, easy step at a time ♥. After I leave the hospital, I will continue to follow up with a neurologist and physical therapist for an unspecified amount of time. I have also been told I am not to go back to work for several weeks, which is really daunting financially, but even I have to admit that my body probably shouldn't be working those 80 hour work weeks anytime soon. For now, I will continue to work on my leg exercises, and try to eat extra healthy to make up for all of the comparative inactivity I'll be doing. I love working out, running, and going for walks, so it will be a bit hard to limit myself to leg lifts in a chair, but I'd rather be bored than push my body too far and thusly prolong my recovery time. All of the wonderful phone calls, messages, and visitors have really acted as great distractions! I want to thank Anne and her beautiful babies, my neighbors Mary Ann and John, my Uncle Eirik, my cousin Shawna, the fabulous Amanda Franklin and Cole Maki, and of course, both my parents for keeping me company yesterday. Today I was surprised by Sarah and Thomas J Clements, and I have plans to rendezvous with Allison Hartl at some point this weekend ♥. You guys have really helped to lift my spirits and have kept me laughing every day. Once I'm home I will have terrible-to-zero cell phone service, so if anyone wants to get a hold of me they'll have a better chance of doing so through skype or by calling our land line. Just message me if you need that info. Or, if you're in the Twin Ports area, you can also make the trek out to our beautiful log house in the woods :) In the meantime, I'm getting antsy so I'm going to sign off and go walk a couple of granny-laps around the floor. I'll talk to you all soon, and hopefully the next time I update, it will be from home! ♥
I should be set to go home today! While I have enjoyed my six-day, five-night stay at the FABULOUS St. Mary's Hospital, complete with a room with a view of Duluth's iconic Copper Top Church adorning the crest of one of our many rolling hills, it will be nice to sleep in my own bed/not be woken up at 5:am to get weighed. I had another brain splitting headache today, which caused me to be fairly comatose throughout the morning. I'm a little nervous about getting these headaches at home, because at home there won't be a nurse ready to inject pain killers into my veins when the throbbing becomes unbearable. Here's hoping the Rx's they prescribed me will yield similar pain-free results. My neurologists warned me that even after receiving my last IVIg treatment today it could still take several weeks to months for the numbness in my hands and feet to subside and for the strength in my legs to come back. Although the extreme six-month projection is a bit daunting, I remain optimistic that I will come out of this thing on the faster end of the spectrum. I mean, I'm pretty lucky in that I made it in here before the Guillain–Barré Syndrome reached my lungs or other major organs... I was told about a boy who had to be hooked up to a ventilator for three entire weeks, and there was also another woman whose Guillain–Barré Syndrome had progressed so far, she was only able to blink her eyes. So yeah, I'm pretty lucky. And by the way, both of those people made a 100% recovery, which is EXACTLY what I am planning on doing ♥. In other news, my last in-patient physical therapy went well today. I practiced climbing up and down stairs, which was pretty exhausting, but at least I can do it. I'm incredibly thankful that I started running last year! The strength I built up in my legs running 5k's, 10k's, and Half-Marathons made my already strong legs even stronger. Now I call upon those reservoirs of strength to do simple things, like getting on and off the toilet without using my arms. And I believe my always-optimistic personality has helped me just as much. I am so happy that we KNOW what is wrong with me, and that I CAN make a 100% comeback, that I never really get frustrated about how hard little things can be. Actually, I think it's sort of funny the way I toddle around with my super sweet cane :) I'm not too worried about how long recovery may take, because I am good at focusing on taking good care of myself one day at a time. I think my running career has also really mentally prepared me for this. I use the same sort of thought process to tackle this as I did on my 14 mile training runs - rather than get overwhelmed by the total length of the run, I would focus on moving my legs one gentle, comfortable, easy step at a time ♥. After I leave the hospital, I will continue to follow up with a neurologist and physical therapist for an unspecified amount of time. I have also been told I am not to go back to work for several weeks, which is really daunting financially, but even I have to admit that my body probably shouldn't be working those 80 hour work weeks anytime soon. For now, I will continue to work on my leg exercises, and try to eat extra healthy to make up for all of the comparative inactivity I'll be doing. I love working out, running, and going for walks, so it will be a bit hard to limit myself to leg lifts in a chair, but I'd rather be bored than push my body too far and thusly prolong my recovery time. All of the wonderful phone calls, messages, and visitors have really acted as great distractions! I want to thank Anne and her beautiful babies, my neighbors Mary Ann and John, my Uncle Eirik, my cousin Shawna, the fabulous Amanda Franklin and Cole Maki, and of course, both my parents for keeping me company yesterday. Today I was surprised by Sarah and Thomas J Clements, and I have plans to rendezvous with Allison Hartl at some point this weekend ♥. You guys have really helped to lift my spirits and have kept me laughing every day. Once I'm home I will have terrible-to-zero cell phone service, so if anyone wants to get a hold of me they'll have a better chance of doing so through skype or by calling our land line. Just message me if you need that info. Or, if you're in the Twin Ports area, you can also make the trek out to our beautiful log house in the woods :) In the meantime, I'm getting antsy so I'm going to sign off and go walk a couple of granny-laps around the floor. I'll talk to you all soon, and hopefully the next time I update, it will be from home! ♥
The Mystery Illness Diaries: Literally Mind-Blowing
First published on March 23, 2012 at 1:11 a.m.
Today was pretty rough. My treatments may or may not be the cause of some really debilitating headaches I've been having. As a lot of you know, one of my major claims to fame (besides being from Minnesota, and having the best dad in the whole wide world) has always been that for some unknown reason I have never ever in my life had a headache. Now, it seems, I'm making up for lost time ;) Thankfully, Wife reassured me that if I'm only getting headaches because I'm having adverse reactions to a super rare and random nervous system condition, then it doesn't really count and that my record still stands :) Today I talked to two different neurologists about these persistent assaults on my cranium, and one neurologist felt that the headaches had nothing to do with my Guillain–Barré Syndrome treatments, while the other neurologist was pretty positive they had everything to do with my treatments. Huh. Either way, the nurses pumped pain killers into my veins and gave me a muscle relaxer, which helped me slowly morph from a sobbing pathetic girl-child, writhing in her sheets, back to my typical bubbly self just in time to visit with the completely wonderful and thoughtful Kirstin and Paul Cannon ♥. A special thanks goes out to Megan Dorothy Moroff for hinting to them that I had acquired a special affinity for chocolate covered pretzels over this past year. I fully believe that the tasty treat they brought me helped to keep the headaches at bay. Mitch Belsley would have been pleased ♥. My spirits continued to be lifted by more wonderful visits from Kristin Anderson, Tim Kujala, Liz Sobczak, Christine Bremser, Robin McCauley, Sarah Weitkuhn, and my wonderful parents throughout the day! After power napping for a few hours in the afternoon, I awoke feeling refreshed and rejuvenated. I even walked around the nurse's station THREE TIMES IN A ROW. Ever the optimist, I believed that the headaches were gone to stay, and I considered not taking any pain meds for the evening. BAD IDEA. Upon stepping into the shower I suddenly found myself face to face with my new foe Headache, locked in a territorial battle for control of my skull. Needless to say it was not a battle I could win on my own. After my shower my wonderful nurses put more (literally mind numbing) medicine into my veins which, along with the muscle relaxers and various combinations of hot and cold treatments on my neck, has helped quite a bit. I am incredibly thankful that I am still in the hospital now, and for the rest of these treatments. I can't imagine having to deal with these painful side effects at home... Before I sign off and go to bed, I'd like to say once again that everyone's love and support really and truly have been even more important to me than the pain killers. Your thoughtfulness, eclectic senses of humor, and encouragement have acted as both sources of inspiration for me, as well as great distractions from pain. Many of you have written wonderful messages, and I just want you to know that I have read all of them, and am going to write back soon ♥. And now I must force myself to shut my computer off so that I can get some real, deliciously pain-free sleep. It is going to be a better day tomorrow, and I need to be well-rested so that I can absorb all of the wonderfulness that it is going to bring ♥. Goodnight ♥.
Today was pretty rough. My treatments may or may not be the cause of some really debilitating headaches I've been having. As a lot of you know, one of my major claims to fame (besides being from Minnesota, and having the best dad in the whole wide world) has always been that for some unknown reason I have never ever in my life had a headache. Now, it seems, I'm making up for lost time ;) Thankfully, Wife reassured me that if I'm only getting headaches because I'm having adverse reactions to a super rare and random nervous system condition, then it doesn't really count and that my record still stands :) Today I talked to two different neurologists about these persistent assaults on my cranium, and one neurologist felt that the headaches had nothing to do with my Guillain–Barré Syndrome treatments, while the other neurologist was pretty positive they had everything to do with my treatments. Huh. Either way, the nurses pumped pain killers into my veins and gave me a muscle relaxer, which helped me slowly morph from a sobbing pathetic girl-child, writhing in her sheets, back to my typical bubbly self just in time to visit with the completely wonderful and thoughtful Kirstin and Paul Cannon ♥. A special thanks goes out to Megan Dorothy Moroff for hinting to them that I had acquired a special affinity for chocolate covered pretzels over this past year. I fully believe that the tasty treat they brought me helped to keep the headaches at bay. Mitch Belsley would have been pleased ♥. My spirits continued to be lifted by more wonderful visits from Kristin Anderson, Tim Kujala, Liz Sobczak, Christine Bremser, Robin McCauley, Sarah Weitkuhn, and my wonderful parents throughout the day! After power napping for a few hours in the afternoon, I awoke feeling refreshed and rejuvenated. I even walked around the nurse's station THREE TIMES IN A ROW. Ever the optimist, I believed that the headaches were gone to stay, and I considered not taking any pain meds for the evening. BAD IDEA. Upon stepping into the shower I suddenly found myself face to face with my new foe Headache, locked in a territorial battle for control of my skull. Needless to say it was not a battle I could win on my own. After my shower my wonderful nurses put more (literally mind numbing) medicine into my veins which, along with the muscle relaxers and various combinations of hot and cold treatments on my neck, has helped quite a bit. I am incredibly thankful that I am still in the hospital now, and for the rest of these treatments. I can't imagine having to deal with these painful side effects at home... Before I sign off and go to bed, I'd like to say once again that everyone's love and support really and truly have been even more important to me than the pain killers. Your thoughtfulness, eclectic senses of humor, and encouragement have acted as both sources of inspiration for me, as well as great distractions from pain. Many of you have written wonderful messages, and I just want you to know that I have read all of them, and am going to write back soon ♥. And now I must force myself to shut my computer off so that I can get some real, deliciously pain-free sleep. It is going to be a better day tomorrow, and I need to be well-rested so that I can absorb all of the wonderfulness that it is going to bring ♥. Goodnight ♥.
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