Hello, friends! I finally finished moving all of my old updates from facebook to this blog. Now I have my entire medical journey thus far right here, all in one place. On to what's been happening this week.
First, I'd like to propose a question. What is it about peeing your pants that makes you immediately feel uncomfortable? I mean, if you really stop to think about it, emptying your bladder feels pretty good. So it's not the actual act of peeing your pants that horrifies you. It's got to be the "holy crap it is only socially acceptable for toddlers to pee their pants and I'm a grown up oh my god" social factor that makes one cringe at the thought. And sure, there are some hygiene factors in there that need to be taken into consideration. But over all, I believe that if you took all social and hygiene concerns out of the equation, people would be peeing their pants like crazy just for the fun of it.
Don't believe me? That's okay. Either way, I am here to tell you that I have felt what it feels like to pee your pants without actually peeing your pants, and it feels awesome.
On Tuesday the Infectious Disease doctor told me that the people in Rheumatology wanted me to have a series of CAT Scans run so that they could see if there were any hidden little joys lurking in my lymph nodes. Upon arriving at the radiology lab, the nurses gave me about a liter of (thankfully flavorless) iodine water to drink so that they could run the CAT Scans both with contrast and without contrast. I'll just let you know right now that I don't really know what that means. I had them explain it to me, but I've had so many medical procedures explained to me over the past month and a half that it sort of goes in one ear and out the other. Anywho, they ran a series of CAT Scans on me and then, for contrast's sake, pulled me out of the tube so that they could give me one last injection of iodine for the next series of scans.
"Okay dear, now when we give you this injection, you are immediately going to feel a sensation of warmth spreading through your body. That warmth is going to rush to your crotch and it is going to feel like you're peeing your pants. JUST RELAX, you are not peeing your pants, so there will be no need to clench or tense up. Just go with it."
And with that the last shot of iodine was sent coursing through my veins! At first I didn't feel any warmth anywhere at all. My thought process went something along the lines of, "Well, this is disappointing I don't really feel anything at - holy shit I'm peeing my pants I'm peeing my pants there is PEE EVERYWHERE."
I started to giggle uncontrollably, like a little kid who has been caught actually peeing her pants. The microphone clicked on. "Is everything all right in there?"
"Yeah, I just really, really feel like I'm peeing my pants."
"Yes, well, we warned you that would happen." Click.
For whatever reason, the combination of the "spreading warmth" and the reassuring knowledge that I wasn't actually peeing my pants made the entire experience relaxing and enjoyable. It was the kind of experience I wouldn't mind having to do again. I imagined a world in which people tried to finagle their doctors into ordering unnecessary CAT Scans with Contrast, just so they could enjoy a pee-free, pants-peeing experience. It could be the cool new thing all the Youths do. There would be reality TV shows about it. Parents wouldn't understand.
After I was done not-peeing-my-pants, I left Radiology and headed up to Neurology for a follow-up appointment made back when I was having those horrific spinal headaches. Thankfully the Blood Bandage they injected to cover my leaky spine-hole has continued to do its job, and I am happy to report that I've been headache free for awhile now ♥.
By far the best part of my follow-up was when I was finally given official confirmation that I do not have MS, ALS (Lou Gehrig's disease), or any brain tumors!!!
Back when neurology first decided that I had never had Guillain-Barre Syndrome, I was still suffering from the worst of the spinal headaches and was immediately checked into the hospital so that I could undergo the Blood Bandage procedure that night. Unfortunately, this all happened so fast that I was unable to get official confirmation that some of those other big, scary neurological disorders were also crossed off the list. Since then, every doctor I've talked to has said something along the lines of "Well, I don't think you have MS, etc., but since I'm not a neurologist, I can't really give you a final answer." To their credit they would attempt to contact my old neurologists to get a final answer from one of them, but three weeks later I had still never received word either way. Talk about frustrating. It's not like I was asking them to please double check if this runny nose I'd been dealing with officially meant I had a cold. I was asking them about big fat scary things that were haunting my brain. I wanted to call up the neurologists myself and yell "For the love of god, please just answer my other doctors' emails."
The RN I was working with at my follow-up was incredibly sympathetic to this plight, and immediately pulled up all of the MRIs I had taken about a month earlier. I had never actually seen my MRIs, and it was really cool to look at my brain from all of the different angles and views. The nurse told me I had a beautiful brain (yay!) and pointed out the different areas where there would be big white spots if I did have MS or other stuff like that. Thankfully, my brain was spot-free! She took me through view after view, pointing out how different parts of the brain would look if you had MS, or ALS, or Alzheimer's, or chronic migraines, or what it would look like if tumors were present. I found myself breathing easier every time she flipped to another view and pronounced, "Wow, your brain looks great!" Maybe it was vanity, but hearing I had a beautiful brain was super awesome ♥.
When we were done scrolling through my MRIs, the nurse said, "Well, I'm not supposed to do this, but let's pull up the CAT Scans you just had done, and see if anything has come up yet!" Let me just say that I reeeeeally liked this woman. Only some of my CAT Scans had come through at that point, but all of the ones we could see were coming back healthy and normal. And, although I would really like some answers as to what the hell is wrong with me, I was glad to see that thus far my lymph nodes and whatever else they were looking at were lookin' good.
I have still not been contacted regarding the results of all of my CAT Scans. In fact, if it weren't for the awesome nurse in neurology who liked my brain, I wouldn't know anything about the results at all. I think I would normally be pissed off about this lack of communication, but I've been feeling a bit better, and a bit stronger lately, and I don't want to waste what little energy I have these days on being upset and angry. I have my first Physical Therapy appointment early Monday morning at the clinic, and while there I plan on leaving a note for my doctor to call me by the end of the day to talk about where we are going to go from here.
I am happy to report that although we are still no closer to figuring out what my Mystery Illness is, I have been feeling a little better each day. Today I even went for my first real walk! It was beautiful out, and I needed to feel some sunlight on my face. I grabbed my sweet cane, slowly hobbled down the stairs, and walked all the way to our nearest neighbor's house and back! Because I still walk incredibly slow, and because we live in the country and our neighbors are more than 50 feet away from our garage, my entire walk took me about 20 minutes. It kind of made me laugh that it took that long just to get to the Nelson's and back, but I was so stoked to have even done it that I gave a number of enthusiastic high-fives to members of my family before collapsing exhausted on the couch. Yes, I am still incredibly weak. Yes, my feet are still numb, and yes I still have to take frequent naps throughout the day. But I went on a freakin' walk today, and that is not something I was able to do several weeks ago.
While I still hope and pray every day that they identify what it is that has been attacking my body, I am incredibly thankful that I continue to feel a little bit better as time goes on. It helps give me patience, it helps keep me humble, and it helps give me hope. And it is this blend of patience, humility, and hopefulness that allows me to continue to believe that whatever this Mystery Illness is, I will beat it, and I will come out stronger than ever when it is all over. Yes, I will ♥.
Saturday, April 14, 2012
Friday, April 13, 2012
The Mystery Illness Diaries: She Put the Miss in Misdemeanor
First published on April 10, 2012 at 12:20 a.m.
Lately I've been feeling a certain kinship to one of my favorite childhood PBS shows, "Where In The World Is Carmen Sandiego?" That show was so awesome. You learned stuff from it, you chased after a world-class criminal, and it had ROCKAPELLA as its House Band. Okay, I just found a clip of the theme song on YouTube... Holy Crap. It's STILL awesome. I'll re-post it at the bottom of this update because it's totally worth watching. Bonus: I'd completely forgotten about the one duder's super sweet mullet-braids. It's a must-see ♥.
Anywho, lately I've been feeling like my body is The World and my Mystery Illness is Carmen Sandiego. And the doctors... they're the super smart Middle Schoolers that just can't seem to catch Carmen Sandiego, even though they're hitting the buzzers at the right time and wearing those awesome leather jackets. My Mystery Illness/Carmen Sandiego has been chased through the departments of Neurology, Infectious Diseases, Auto-Immune Disorders, Rheumatology and a few other places around The World. Currently the super smart middle schoolers/doctors think a clue to Carmen's whereabouts might be hiding in my lymph nodes. And so, a series of CAT Scans are in the process of being scheduled, per request of the middle schoolers from the department of Rheumatology.
My switch to this department came last Friday, when the Infectious Disease doctor I'd been working with called me and informed me that if I came in and had this once certain test run - and it came back elevated - we would finally have our diagnosis! Now, although I have always been famous for being a shinning optimist, five weeks of dead ends had led me to be Hopeful without Getting My Hopes Up. I guess you can say that I have begun to temper my Optimism with Realism, but have managed to do so without becoming Jaded. After getting off of the phone I went to the lab, had my blood drawn, waited for the results, and TA-DA! Everything came back normal. Even so, the ID doctor still wanted to try to get me in to see the rheumatologists in town. Why? Something to do with auto-immune disorders with a possible serving of musculoskeletal disorders on the side. When I mention the word "rheumatologists" we all think of "rheumatoid arthritis," so before you worry about that I'll say that thus far, no doctor has thrown arthritis at me as a possible culprit. I'm not really sure what exactly the rheumatologists are looking for, and in all honesty, until we get a test with conclusive results, it doesn't really matter. All we know now is all we have ever known: I have incredibly high levels of inflammation that continue to climb and suggest my body is fighting something, something that we might as well just continue to call Carmen Sandiego, for all that they have been able to deduce.
Interestingly enough, my symptoms have shifted around a bit. My legs felt stronger all last week then they had felt the entire month prior. And the numbness in my hands and feet seems to have ever so slightly decreased! However, the strength in my arms has gone down a goodly bit, and I've started dropping things. The spinal headaches seem to have completely ceased (REJOICE!!!) but I've started having chest pains and my mouth has suddenly erupted with painful sores that have turned eating, smiling, talking and yawning into harrowing experiences. So, overall I'm still suffering from various ailments, but the ailments themselves seem to be changing. Oh variety, you are the spice of life!
Thankfully, I think I've gotten a good grasp on the new eating-and-napping cycles my body has slipped into. As mentioned in my last post, I've found that I need to lay down and rest every few hours, even if I've done nothing but watch Hulu all morning. Rest Time has become a non-optional, crucial component of my emotional stability, and I have learned to respect it. Eating small meals/snacks frequently is also totally clutch. If I don't eat with a certain amount of frequency, I start to get dizzy, nauseous, sick and sad. In the same vein, I can't eat very much at one time. At best, eating a regular sized meal makes me slip into a total food coma (it's like every day is Thanksgiving!). At worst I get... really, really sick. Balance is the name of the game. And since the doctors are busy playing Carmen Sandiego, I spend a lot of time playing the Balance Game. It's like the one thing that I, CORY, can actually do for myself. Balance helps to keep the crying jags at bay. Balance also helps me appreciate the little things better. Take for example last Friday, when the test that was supposed to magically give me my mystery diagnoses came back "normal." Usually, getting said results would cause me to burst into tears. BUT, that morning, for the first time in a month, I had put my pants on WHILE STANDING UP. This is actually a pretty big deal. And I am not above treating my toddler-like accomplishments with the same positive reinforcement and reverence usually reserved for, well, toddlers. So, even though the results were once again inconclusive, I did NOT burst into tears because I had napped, snacked, and put my pants on while standing that morning. So yeah, those little victories that pop up throughout the day? That shit's important ♥.
Another important thing that happened today was that I had my first meeting with a social worker to help me figure out things like insurance vs. COBRA vs. Medical Assistance vs. Minnesota Care, as well as how to apply for Unemployment in the face of the eminent job-firing / forced resignation that is most likely going to occur this week (long story). I'm in the process of filling out various complicated applications for various programs that should be able to help me when my insurance runs out at the end of this month. I am incredibly grateful that I have the good people at the Lake Superior Community Health Center to help me navigate a bunch of previously uncharted financial waters. And a big fat special thanks goes out to Stephanie Hogenson for pointing me in their direction! ♥
At the end of the day, while I am obviously frustrated that the doctors are still stumped, I am grateful that I feel better than I did a month ago, grateful that I'm on the road to getting some much needed financial assistance, and grateful that I can manage my frustrations with the right balance of naps, snacks, and time with friends and family. My super awesome friends and family here in Duluth have been really wonderful about checking in on me frequently, inviting me to social outings, and even driving all the way out to my house to visit me when I'm too tired to make it into town myself. And all of you guys - your love and support has been HUGE. I can't say that enough. Let me put it this way - if my life has indeed turned into an on-going season of Carmen Sandiego, then you guys have, over and over again, demonstrated that you have the power to cheer me up as quickly as the Carmen Sandiego theme song does. In other words, you guys are like my Rockapella ♥. I really can't put it much better than that :)
Lately I've been feeling a certain kinship to one of my favorite childhood PBS shows, "Where In The World Is Carmen Sandiego?" That show was so awesome. You learned stuff from it, you chased after a world-class criminal, and it had ROCKAPELLA as its House Band. Okay, I just found a clip of the theme song on YouTube... Holy Crap. It's STILL awesome. I'll re-post it at the bottom of this update because it's totally worth watching. Bonus: I'd completely forgotten about the one duder's super sweet mullet-braids. It's a must-see ♥.
Anywho, lately I've been feeling like my body is The World and my Mystery Illness is Carmen Sandiego. And the doctors... they're the super smart Middle Schoolers that just can't seem to catch Carmen Sandiego, even though they're hitting the buzzers at the right time and wearing those awesome leather jackets. My Mystery Illness/Carmen Sandiego has been chased through the departments of Neurology, Infectious Diseases, Auto-Immune Disorders, Rheumatology and a few other places around The World. Currently the super smart middle schoolers/doctors think a clue to Carmen's whereabouts might be hiding in my lymph nodes. And so, a series of CAT Scans are in the process of being scheduled, per request of the middle schoolers from the department of Rheumatology.
My switch to this department came last Friday, when the Infectious Disease doctor I'd been working with called me and informed me that if I came in and had this once certain test run - and it came back elevated - we would finally have our diagnosis! Now, although I have always been famous for being a shinning optimist, five weeks of dead ends had led me to be Hopeful without Getting My Hopes Up. I guess you can say that I have begun to temper my Optimism with Realism, but have managed to do so without becoming Jaded. After getting off of the phone I went to the lab, had my blood drawn, waited for the results, and TA-DA! Everything came back normal. Even so, the ID doctor still wanted to try to get me in to see the rheumatologists in town. Why? Something to do with auto-immune disorders with a possible serving of musculoskeletal disorders on the side. When I mention the word "rheumatologists" we all think of "rheumatoid arthritis," so before you worry about that I'll say that thus far, no doctor has thrown arthritis at me as a possible culprit. I'm not really sure what exactly the rheumatologists are looking for, and in all honesty, until we get a test with conclusive results, it doesn't really matter. All we know now is all we have ever known: I have incredibly high levels of inflammation that continue to climb and suggest my body is fighting something, something that we might as well just continue to call Carmen Sandiego, for all that they have been able to deduce.
Interestingly enough, my symptoms have shifted around a bit. My legs felt stronger all last week then they had felt the entire month prior. And the numbness in my hands and feet seems to have ever so slightly decreased! However, the strength in my arms has gone down a goodly bit, and I've started dropping things. The spinal headaches seem to have completely ceased (REJOICE!!!) but I've started having chest pains and my mouth has suddenly erupted with painful sores that have turned eating, smiling, talking and yawning into harrowing experiences. So, overall I'm still suffering from various ailments, but the ailments themselves seem to be changing. Oh variety, you are the spice of life!
Thankfully, I think I've gotten a good grasp on the new eating-and-napping cycles my body has slipped into. As mentioned in my last post, I've found that I need to lay down and rest every few hours, even if I've done nothing but watch Hulu all morning. Rest Time has become a non-optional, crucial component of my emotional stability, and I have learned to respect it. Eating small meals/snacks frequently is also totally clutch. If I don't eat with a certain amount of frequency, I start to get dizzy, nauseous, sick and sad. In the same vein, I can't eat very much at one time. At best, eating a regular sized meal makes me slip into a total food coma (it's like every day is Thanksgiving!). At worst I get... really, really sick. Balance is the name of the game. And since the doctors are busy playing Carmen Sandiego, I spend a lot of time playing the Balance Game. It's like the one thing that I, CORY, can actually do for myself. Balance helps to keep the crying jags at bay. Balance also helps me appreciate the little things better. Take for example last Friday, when the test that was supposed to magically give me my mystery diagnoses came back "normal." Usually, getting said results would cause me to burst into tears. BUT, that morning, for the first time in a month, I had put my pants on WHILE STANDING UP. This is actually a pretty big deal. And I am not above treating my toddler-like accomplishments with the same positive reinforcement and reverence usually reserved for, well, toddlers. So, even though the results were once again inconclusive, I did NOT burst into tears because I had napped, snacked, and put my pants on while standing that morning. So yeah, those little victories that pop up throughout the day? That shit's important ♥.
Another important thing that happened today was that I had my first meeting with a social worker to help me figure out things like insurance vs. COBRA vs. Medical Assistance vs. Minnesota Care, as well as how to apply for Unemployment in the face of the eminent job-firing / forced resignation that is most likely going to occur this week (long story). I'm in the process of filling out various complicated applications for various programs that should be able to help me when my insurance runs out at the end of this month. I am incredibly grateful that I have the good people at the Lake Superior Community Health Center to help me navigate a bunch of previously uncharted financial waters. And a big fat special thanks goes out to Stephanie Hogenson for pointing me in their direction! ♥
At the end of the day, while I am obviously frustrated that the doctors are still stumped, I am grateful that I feel better than I did a month ago, grateful that I'm on the road to getting some much needed financial assistance, and grateful that I can manage my frustrations with the right balance of naps, snacks, and time with friends and family. My super awesome friends and family here in Duluth have been really wonderful about checking in on me frequently, inviting me to social outings, and even driving all the way out to my house to visit me when I'm too tired to make it into town myself. And all of you guys - your love and support has been HUGE. I can't say that enough. Let me put it this way - if my life has indeed turned into an on-going season of Carmen Sandiego, then you guys have, over and over again, demonstrated that you have the power to cheer me up as quickly as the Carmen Sandiego theme song does. In other words, you guys are like my Rockapella ♥. I really can't put it much better than that :)
The Mystery Illness Diaries: One Month Anniversary
First published on April 4, 2012 at 10:47 p.m.
Happy One Month Anniversary to me! One month ago today I started losing feeling in my hands, feet, arms and legs. To celebrate, I had my first appointment with the Infectious Disease people downtown :) The good news is that the doctor I met with was very kind, a great listener, and incredibly thorough. He had rigorously studied my charts in advance and then asked me to explain in great detail everything that had happened over the past month. No detail was unexamined - he even questioned me about the air and water quality of the slums I worked in when I was living in Ireland (very poor, for the record), as well as what my life was like when I was living in Ecuador (although this conversation was relatively short, as my parents were able to smuggle me into this country by the ripe ol' age of about nine months ♥). Unfortunately, after listening to my entire life story, he was still completely stumped. He said that at this time he was not able to find any sort of "unifying factors" amongst my symptoms, which basically means that he couldn't think of anything that would explain all of the different stuff I've been going through. So, back to the lab I went, for more blood draws! I'm not sure what will come out it though, as most of the tests I'm having run on me this time are repeat tests... I have, medically speaking, sunk into a bit of a pattern. See doctor. Stump doctor. Have blood drawn. Wait 2-4 days for results. Everything comes back negative. See new doctor. Stump new doctor. Oh crap, it's the weekend, wait two bonus days for anything to move forward. Etc., etc. We haven't talked about Mayo again yet this week, but at this point I'm ready for them to send me down south whenever. If it takes world class doctors to get to the bottom of this mystery, then so be it. I'm willing to do whatever it takes to get better, I just need someone to figure out WHAT is wrong with me so I can start my road to recovery. I'm working hard on being patient, because getting upset (which happens at least 2-3 times daily) does not really help anything. I'm trying to focus on my emotional health, since my physical health continues to remain a medical enigma. I've been trying to connect with friends at least every 2 days just so that I can socialize and have fun with people I love. I would probably try to head into town more but we live a ways out in the country, gas is crazy expensive, and I haven't been able to work in about a month. But still. I NEED to spend time with other people. I'm such a social person to begin with that it's important that I retain some semblance of a social routine in order to battle the I've-Been-Tired-And-Laying-Around-All-Day Blues. Today I met up with a friend who has also battled some major medical mysteries in her life, and it was so nice to just vent and compare notes :) I also had dinner with my wonderful running friends. I may not be able to run, but I can still at least hang out with the rowdiest group of runners this side of Superior ♥. I've also been paying attention to the new eating/sleeping cycles my body has sort of slipped into. I've learned that a few different times a day, I just NEED to go lie down for an hour or so to rest. At first I resisted this, because I haven't exactly been doing much that would require me to nap-up afterwards (watching all of this season's episodes of The Voice on Hulu isn't exactly taxing), but I have learned that my body needs straight up REST every few hours. Understanding this has helped to keep my moods more balanced during the day. I've also learned that I can't eat a lot at one time any more. My stomach can't handle the 3 Big Meals A Day routine our culture is famous for. At the same time, I need to have small snacks every so often throughout the day, or I start to feel sick. This is kind of ironic, because technically it is healthier to adhere to a smaller-meals-more-snacks routine. So, in a way, my mystery illness is making... me... healthier?? ;) Like I said, there's really been no developments on the Answers Front, but I am slowly learning better ways to deal with my current state of being. And, I appreciate everyone who reads my updates and sends me notes of encouragement as well. Writing these blog-like entries is actually pretty therapeutic for me. It helps me organize my thoughts and feelings into word form while simultaneously updating those who have asked to be updated. Oh, and I have missed a lot of phone calls and texts because I get next to zero service at home, so please don't think I've been ignoring you if I never seem to answer my cell phone. Because I'm spending a lot of time at home, if you want to get a hold of me it's almost always better to just try calling our land line first ♥. That's really all I have to say for now - I will for sure lay down another long-winded status update as soon as I find out any news :) Thank you all so much for your continued love, prayers, and support. Goodnight ♥.
Happy One Month Anniversary to me! One month ago today I started losing feeling in my hands, feet, arms and legs. To celebrate, I had my first appointment with the Infectious Disease people downtown :) The good news is that the doctor I met with was very kind, a great listener, and incredibly thorough. He had rigorously studied my charts in advance and then asked me to explain in great detail everything that had happened over the past month. No detail was unexamined - he even questioned me about the air and water quality of the slums I worked in when I was living in Ireland (very poor, for the record), as well as what my life was like when I was living in Ecuador (although this conversation was relatively short, as my parents were able to smuggle me into this country by the ripe ol' age of about nine months ♥). Unfortunately, after listening to my entire life story, he was still completely stumped. He said that at this time he was not able to find any sort of "unifying factors" amongst my symptoms, which basically means that he couldn't think of anything that would explain all of the different stuff I've been going through. So, back to the lab I went, for more blood draws! I'm not sure what will come out it though, as most of the tests I'm having run on me this time are repeat tests... I have, medically speaking, sunk into a bit of a pattern. See doctor. Stump doctor. Have blood drawn. Wait 2-4 days for results. Everything comes back negative. See new doctor. Stump new doctor. Oh crap, it's the weekend, wait two bonus days for anything to move forward. Etc., etc. We haven't talked about Mayo again yet this week, but at this point I'm ready for them to send me down south whenever. If it takes world class doctors to get to the bottom of this mystery, then so be it. I'm willing to do whatever it takes to get better, I just need someone to figure out WHAT is wrong with me so I can start my road to recovery. I'm working hard on being patient, because getting upset (which happens at least 2-3 times daily) does not really help anything. I'm trying to focus on my emotional health, since my physical health continues to remain a medical enigma. I've been trying to connect with friends at least every 2 days just so that I can socialize and have fun with people I love. I would probably try to head into town more but we live a ways out in the country, gas is crazy expensive, and I haven't been able to work in about a month. But still. I NEED to spend time with other people. I'm such a social person to begin with that it's important that I retain some semblance of a social routine in order to battle the I've-Been-Tired-And-Laying-Around-All-Day Blues. Today I met up with a friend who has also battled some major medical mysteries in her life, and it was so nice to just vent and compare notes :) I also had dinner with my wonderful running friends. I may not be able to run, but I can still at least hang out with the rowdiest group of runners this side of Superior ♥. I've also been paying attention to the new eating/sleeping cycles my body has sort of slipped into. I've learned that a few different times a day, I just NEED to go lie down for an hour or so to rest. At first I resisted this, because I haven't exactly been doing much that would require me to nap-up afterwards (watching all of this season's episodes of The Voice on Hulu isn't exactly taxing), but I have learned that my body needs straight up REST every few hours. Understanding this has helped to keep my moods more balanced during the day. I've also learned that I can't eat a lot at one time any more. My stomach can't handle the 3 Big Meals A Day routine our culture is famous for. At the same time, I need to have small snacks every so often throughout the day, or I start to feel sick. This is kind of ironic, because technically it is healthier to adhere to a smaller-meals-more-snacks routine. So, in a way, my mystery illness is making... me... healthier?? ;) Like I said, there's really been no developments on the Answers Front, but I am slowly learning better ways to deal with my current state of being. And, I appreciate everyone who reads my updates and sends me notes of encouragement as well. Writing these blog-like entries is actually pretty therapeutic for me. It helps me organize my thoughts and feelings into word form while simultaneously updating those who have asked to be updated. Oh, and I have missed a lot of phone calls and texts because I get next to zero service at home, so please don't think I've been ignoring you if I never seem to answer my cell phone. Because I'm spending a lot of time at home, if you want to get a hold of me it's almost always better to just try calling our land line first ♥. That's really all I have to say for now - I will for sure lay down another long-winded status update as soon as I find out any news :) Thank you all so much for your continued love, prayers, and support. Goodnight ♥.
The Mystery Illness Diaries: A Humorous Interlude
First published on April 3, 2012 at 9:03 p.m.
Me: "Ole, someone's here! They just pulled up, what is someone doing all the way out here this late at night?"
Baby Brother: "It's just mom, she's home from teaching... I mean, they're here to MURDER YOU."
Me: "What?"
Baby Brother: "Better run fast, Cor. Oh wait... YOU CAN'T."
Nothing like the love of your family to help you get through long, drawn-out, freak medical scares ♥.
Me: "Ole, someone's here! They just pulled up, what is someone doing all the way out here this late at night?"
Baby Brother: "It's just mom, she's home from teaching... I mean, they're here to MURDER YOU."
Me: "What?"
Baby Brother: "Better run fast, Cor. Oh wait... YOU CAN'T."
Nothing like the love of your family to help you get through long, drawn-out, freak medical scares ♥.
The Mystery Illness Diaries: Changing of the Guard
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! ♥
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! ♥
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 ♥.
The Mystery Illness Diaries: Purple Mountains Majesties
First published on March 21, 2012 at 8:02 p.m.
Hi everyone! ♥ Today I had my second IVIg treatment in attempt to halt all of the nerve damage brought on by the Guillain–Barré Syndrome. Treatments have been going well for the most part - yesterday was a breeze, but today the IVIg sort of burned out the inside of my vein, so they had to start a new IV site on my other arm. My arms are slowly amassing a beautiful array of bruises that bring new meaning to the phrase Purple Mountains Majesties ♥. I was slated to go home today but circumstances being as they are it was decided that I will actually need to stay here for the full length of my IVIg treatment, which should end sometime on Saturday. I am actually okay with this though, because my house is in no way user-friendly for someone who is unable to safely tackle stairs. I'm still walking like Bambi, as a newborn, on ice, with his eyes closed, and I appreciate the maneuverability of the set-up I have here. Also, because we live way out in the country, it has been easier for all of my wonderfully supportive and loving visitors to find me here :) Today I started Physical Therapy for reals, and it was crazy to find myself struggling to do something as simple as walk backwards, or sit on a chair and lift my leg up parallel to the floor without using my back/abs/arms to help. Thankfully I just think it's sort of funny the way I hobble around like a drunken grandmother, complete with a shiny bronze cane. My Physical Therapist assured me that even thought it is hard to do some really simple things now, between my treatments and the strength I already had in my legs, I will eventually be able to walk and run normally again, even if it takes awhile. All we have to wait on are those little nerve coverings to grow back again so that my nerves can fire messages back and forth to my muscles they way the are supposed to. Pain and discomfort continues to come and go, but I honestly have all of you to thank for helping me cope with all of that - your phone calls and visits and posts lift me up EVERY day, minute, and hour. It really is powerful. I feel SO GOOD about my road to recovery, and that has so much to do with your love and support! I'm not even scared, because I know that no matter what happens, I have the most amazing net of love ever to catch me if ever I fall ♥. I will keep updating things on here, LIVE from Room 8247 located in beautiful St. Mary's Hospital ;) I'd like to thank my Aunt Jill Hinks for sneaking in while working in the building, Abner Martin for bringing me a gorgeous vase full of roses (I love roses! ♥), and Sarah Weitkuhn for surprising me with a delicious back scratcher (bonus: she's working the overnight here, and we have plans to have her sneak into my room so that we can watch The Renegade Running Group's Freeze Yer Gizzard Blizzard movie that Alicia made). I'd also like to thank Katelyn Esterby for introducing me to the Guy On A Buffalo series - you have indirectly made my wonderful father and I burst out into song sporadically throughout the entire day :) ALSO! I would like to thank Kali Benrud and her mom for calling me all the way from Australia! Amazing ♥. Thank you all so much again for all of you thoughts and hugs! They really do help keep me sane, strong, and smiling ♥.
Hi everyone! ♥ Today I had my second IVIg treatment in attempt to halt all of the nerve damage brought on by the Guillain–Barré Syndrome. Treatments have been going well for the most part - yesterday was a breeze, but today the IVIg sort of burned out the inside of my vein, so they had to start a new IV site on my other arm. My arms are slowly amassing a beautiful array of bruises that bring new meaning to the phrase Purple Mountains Majesties ♥. I was slated to go home today but circumstances being as they are it was decided that I will actually need to stay here for the full length of my IVIg treatment, which should end sometime on Saturday. I am actually okay with this though, because my house is in no way user-friendly for someone who is unable to safely tackle stairs. I'm still walking like Bambi, as a newborn, on ice, with his eyes closed, and I appreciate the maneuverability of the set-up I have here. Also, because we live way out in the country, it has been easier for all of my wonderfully supportive and loving visitors to find me here :) Today I started Physical Therapy for reals, and it was crazy to find myself struggling to do something as simple as walk backwards, or sit on a chair and lift my leg up parallel to the floor without using my back/abs/arms to help. Thankfully I just think it's sort of funny the way I hobble around like a drunken grandmother, complete with a shiny bronze cane. My Physical Therapist assured me that even thought it is hard to do some really simple things now, between my treatments and the strength I already had in my legs, I will eventually be able to walk and run normally again, even if it takes awhile. All we have to wait on are those little nerve coverings to grow back again so that my nerves can fire messages back and forth to my muscles they way the are supposed to. Pain and discomfort continues to come and go, but I honestly have all of you to thank for helping me cope with all of that - your phone calls and visits and posts lift me up EVERY day, minute, and hour. It really is powerful. I feel SO GOOD about my road to recovery, and that has so much to do with your love and support! I'm not even scared, because I know that no matter what happens, I have the most amazing net of love ever to catch me if ever I fall ♥. I will keep updating things on here, LIVE from Room 8247 located in beautiful St. Mary's Hospital ;) I'd like to thank my Aunt Jill Hinks for sneaking in while working in the building, Abner Martin for bringing me a gorgeous vase full of roses (I love roses! ♥), and Sarah Weitkuhn for surprising me with a delicious back scratcher (bonus: she's working the overnight here, and we have plans to have her sneak into my room so that we can watch The Renegade Running Group's Freeze Yer Gizzard Blizzard movie that Alicia made). I'd also like to thank Katelyn Esterby for introducing me to the Guy On A Buffalo series - you have indirectly made my wonderful father and I burst out into song sporadically throughout the entire day :) ALSO! I would like to thank Kali Benrud and her mom for calling me all the way from Australia! Amazing ♥. Thank you all so much again for all of you thoughts and hugs! They really do help keep me sane, strong, and smiling ♥.
The Mystery Illness Diaries: Chris Ayala, Meet Guillain–Barré Syndrome
First published on March 20, 2010 at 9:40 p.m.
I have officially been diagnosed with Guillain–Barré Syndrome! Basically, it is a very rare condition where your own body starts attacking the protective covering around your nerves. This is why my hands and feet have gone numb and why I've been losing my ability to walk over the past two weeks. It is not hereditary, it is not contagious, they don't really know WHY people get it, and only 2 out of 100,000 people might get it. The neurologist himself said it's nothing I did wrong and that basically it is just plain BAD LUCK that this happened. My dad always said I was one in a million... turns out I'm also 2 in 100,000 ♥. Treatment started today - for the next five days I will be receiving an IVIg treatment which is a 4-5 hour IV drip of basically stuff that comes from plasma donors. I've also started working with Physical Therapists and Occupational Therapists, who have been evaluating my ability to walk stairs, dress myself, get on/off the bed/toilet/chair, etc. I am now the proud owner of a super-sweet cane! The good news is that this damage is NOT permanent. The bad news is that it could take me anywhere from several weeks to 6 months before I am walking/functioning normally again. The IVIg is stopping the Guillain–Barré from getting worse, but it does not really cure it. Guillain–Barré usually runs its course on its own, and thusly my body will re-grow that protective nerve coating on its own, but the doctors told me that the nerves heal themselves on their own time, and there's really nothing we can do to speed up that re-growth process. Here's hoping that I'm good to go in a few weeks and that this numbness/weakness/pain doesn't last another half a year! :) The other good news is that I should still be able to go to South America with Wolf in October! YAY! The other bad news is that I will most likely have to cancel the epic Midwest + East Coast Tour De Force I had planned out for the next two months. And I also had a little cry this morning when the neurologist told me I would probably not be running Grandma's Half Marathon this year. He said "it is not an impossible possibility" that I could maybe possibly walk it. So for now I am just going to try to heal heal heal and hope for the best. Even in the face of some of these disappointments, overall I am SO glad I have finally been diagnosed! No more blood draws, no more MRIs, NO MORE SPINAL TAPS, and most importantly, in place of all of those things, I now have Knowledge and Hope ♥. My spirits are a millions times higher just knowing that treatment has started and that someday I will be able to put a canoe on my shoulders again. Even if it takes me a long time to get back to that point, I am SO grateful that I CAN get back to that point. This whole thing has been incredibly frustrating and scary, but now at least I KNOW. And you guys have made this whole Impromptu Medical Adventure so much better with an astonishing amount of prayers, calls, texts, messages, visits, and deliveries from the Gift Shop :) Today I was so lucky to spend time cuddling a bunch of cute babies (thank you Kristin and Anne and Josh Gorham!) which cheered me up SO MUCH. My Renegade Running Family has come out in DROVES, armed with silly gifts, love, and knowledge of Hospital Financing (thank you Robin, Shannon, Lindsey, Patricia, Alicia, and Chief Financial Adviser Tina!). AND COTTEY GIRLS! I am blown away by the unending line of flowers, fruit baskets, CATERED FOOD TRAYS, ducks and daisies that were brought to me today via Erin Kathleen McCann Heintz and an entire ARMY of Cottey girls! Erin is going to send me a list of all of you amazing beautiful ladies so that I can thank you all personally. You guys made my dad cry a little (and me) ♥. I am so relieved that the Mystery Illness has been revealed, and that from here on out, I can focus on healing. Thank you to each and every one of you for being there with me, every painful, wobbly step of the way ♥.
P.S. Chris Dj-Chavo Ayala, you made laugh out loud SO HARD when you wrote that you were going to punch my Mystery Illness right in the dick. And I'm not the only one who laughed - several people have mentioned your punching prowess to me, and they are all now waiting with baited breath for you to take action. So without further ado, Chris Ayala, meet Guillain–Barré. Let the punching begin ♥.
I have officially been diagnosed with Guillain–Barré Syndrome! Basically, it is a very rare condition where your own body starts attacking the protective covering around your nerves. This is why my hands and feet have gone numb and why I've been losing my ability to walk over the past two weeks. It is not hereditary, it is not contagious, they don't really know WHY people get it, and only 2 out of 100,000 people might get it. The neurologist himself said it's nothing I did wrong and that basically it is just plain BAD LUCK that this happened. My dad always said I was one in a million... turns out I'm also 2 in 100,000 ♥. Treatment started today - for the next five days I will be receiving an IVIg treatment which is a 4-5 hour IV drip of basically stuff that comes from plasma donors. I've also started working with Physical Therapists and Occupational Therapists, who have been evaluating my ability to walk stairs, dress myself, get on/off the bed/toilet/chair, etc. I am now the proud owner of a super-sweet cane! The good news is that this damage is NOT permanent. The bad news is that it could take me anywhere from several weeks to 6 months before I am walking/functioning normally again. The IVIg is stopping the Guillain–Barré from getting worse, but it does not really cure it. Guillain–Barré usually runs its course on its own, and thusly my body will re-grow that protective nerve coating on its own, but the doctors told me that the nerves heal themselves on their own time, and there's really nothing we can do to speed up that re-growth process. Here's hoping that I'm good to go in a few weeks and that this numbness/weakness/pain doesn't last another half a year! :) The other good news is that I should still be able to go to South America with Wolf in October! YAY! The other bad news is that I will most likely have to cancel the epic Midwest + East Coast Tour De Force I had planned out for the next two months. And I also had a little cry this morning when the neurologist told me I would probably not be running Grandma's Half Marathon this year. He said "it is not an impossible possibility" that I could maybe possibly walk it. So for now I am just going to try to heal heal heal and hope for the best. Even in the face of some of these disappointments, overall I am SO glad I have finally been diagnosed! No more blood draws, no more MRIs, NO MORE SPINAL TAPS, and most importantly, in place of all of those things, I now have Knowledge and Hope ♥. My spirits are a millions times higher just knowing that treatment has started and that someday I will be able to put a canoe on my shoulders again. Even if it takes me a long time to get back to that point, I am SO grateful that I CAN get back to that point. This whole thing has been incredibly frustrating and scary, but now at least I KNOW. And you guys have made this whole Impromptu Medical Adventure so much better with an astonishing amount of prayers, calls, texts, messages, visits, and deliveries from the Gift Shop :) Today I was so lucky to spend time cuddling a bunch of cute babies (thank you Kristin and Anne and Josh Gorham!) which cheered me up SO MUCH. My Renegade Running Family has come out in DROVES, armed with silly gifts, love, and knowledge of Hospital Financing (thank you Robin, Shannon, Lindsey, Patricia, Alicia, and Chief Financial Adviser Tina!). AND COTTEY GIRLS! I am blown away by the unending line of flowers, fruit baskets, CATERED FOOD TRAYS, ducks and daisies that were brought to me today via Erin Kathleen McCann Heintz and an entire ARMY of Cottey girls! Erin is going to send me a list of all of you amazing beautiful ladies so that I can thank you all personally. You guys made my dad cry a little (and me) ♥. I am so relieved that the Mystery Illness has been revealed, and that from here on out, I can focus on healing. Thank you to each and every one of you for being there with me, every painful, wobbly step of the way ♥.
P.S. Chris Dj-Chavo Ayala, you made laugh out loud SO HARD when you wrote that you were going to punch my Mystery Illness right in the dick. And I'm not the only one who laughed - several people have mentioned your punching prowess to me, and they are all now waiting with baited breath for you to take action. So without further ado, Chris Ayala, meet Guillain–Barré. Let the punching begin ♥.
The Mystery Illness Diaries: Post-Spinal Tap and Other Happenings
First published on March 19, 2012 at 11:05 p.m.
Hey everyone! The spinal tap really freaked me out but turned out to be fairly fast and only occasionally painful. WHEW! They are in fact testing for Guillain–Barré, as several of you have guessed (I feel an extra layer of safety surrounding me with all of these medical professional friends ♥). Last I heard they were checking my blood to make sure I don't have an allergic reaction to the IV treatment. I haven't been told that it is for sure Guillain–Barré though, because even though I've been here since noon, the neurologist hasn't come in to talk to me. Thankfully my nurse was pissed off about that and sent a patient advocacy person in not long ago so I could file a "concern," which is apparently an anonymous way to let the nursing staff put pressure on a doctor who isn't visiting their patients in a timely manner. My deeply ingrained Minnesota Friendly syndrome made me feel a bit guilty for filing a concern, but whatever, the fact that I've been losing feeling in my legs concerns me more ;) So, no IV treatment for me today, but hopefully I will see someone right away tomorrow who can tell me what we're dealing with, and how we can deal with it quickly, with no nasty lingering effects. Thank you SO MUCH to everyone for the amazing amount of phone calls, texts, visits, flowers & gifts, JOKES, and most of all LOVE and prayers! ♥ You are all so amazing, and I am a very lucky girl ♥. I also want to thank Sarah Weitkuhn, who came running to the hospital as soon as she heard the words "spinal" and "tap," Arna Rennan for bringing me in and staying with me all day, Cole Maki and Toby for coming to give me sibling love, Brian Dack for making me laugh even when I was crying, my amazing RENEGADE Family - Lori Rothstein, Laura Solmonson, Alicia Hummel, and Brad Christensen - for literally entertaining me for hours and making me forget I was even in a hospital room, and to the ever amazing Suzanna Rasp-Lambert, who had already ordered beautiful flowers and the cutest, fluffiest DUCKY ever from the gift shop before was I even fully checked into my room!!! Actually, the card said "Love, Zenna and the Cottey Hotties," but I deduced that Zenna probably meant Zanna :) This mystery illness has weakened my powerful legs, but not my power of deduction! ♥ Oh, and I have been moved to room 8247 on 8E, and my direct number is now 218.786.7327 - thanks for letting everyone know, Dayna Bissett ♥. So much love to you all! ♥
Hey everyone! The spinal tap really freaked me out but turned out to be fairly fast and only occasionally painful. WHEW! They are in fact testing for Guillain–Barré, as several of you have guessed (I feel an extra layer of safety surrounding me with all of these medical professional friends ♥). Last I heard they were checking my blood to make sure I don't have an allergic reaction to the IV treatment. I haven't been told that it is for sure Guillain–Barré though, because even though I've been here since noon, the neurologist hasn't come in to talk to me. Thankfully my nurse was pissed off about that and sent a patient advocacy person in not long ago so I could file a "concern," which is apparently an anonymous way to let the nursing staff put pressure on a doctor who isn't visiting their patients in a timely manner. My deeply ingrained Minnesota Friendly syndrome made me feel a bit guilty for filing a concern, but whatever, the fact that I've been losing feeling in my legs concerns me more ;) So, no IV treatment for me today, but hopefully I will see someone right away tomorrow who can tell me what we're dealing with, and how we can deal with it quickly, with no nasty lingering effects. Thank you SO MUCH to everyone for the amazing amount of phone calls, texts, visits, flowers & gifts, JOKES, and most of all LOVE and prayers! ♥ You are all so amazing, and I am a very lucky girl ♥. I also want to thank Sarah Weitkuhn, who came running to the hospital as soon as she heard the words "spinal" and "tap," Arna Rennan for bringing me in and staying with me all day, Cole Maki and Toby for coming to give me sibling love, Brian Dack for making me laugh even when I was crying, my amazing RENEGADE Family - Lori Rothstein, Laura Solmonson, Alicia Hummel, and Brad Christensen - for literally entertaining me for hours and making me forget I was even in a hospital room, and to the ever amazing Suzanna Rasp-Lambert, who had already ordered beautiful flowers and the cutest, fluffiest DUCKY ever from the gift shop before was I even fully checked into my room!!! Actually, the card said "Love, Zenna and the Cottey Hotties," but I deduced that Zenna probably meant Zanna :) This mystery illness has weakened my powerful legs, but not my power of deduction! ♥ Oh, and I have been moved to room 8247 on 8E, and my direct number is now 218.786.7327 - thanks for letting everyone know, Dayna Bissett ♥. So much love to you all! ♥
The Mystery Illness Diaries: THIS. IS. SPINAL TAP!
First published on March 19, 2012 at 2:13 p.m.
All checked into the hospital - they just ordered a spinal tap. Scary, so quick! Tell me your favorite joke. The dirtier, the better. It will be a fabulous distraction ♥.
[Editor's Note: At the time of the above post, many people sent me hilarious jokes, all of which helped to lighten the mood ♥].
All checked into the hospital - they just ordered a spinal tap. Scary, so quick! Tell me your favorite joke. The dirtier, the better. It will be a fabulous distraction ♥.
[Editor's Note: At the time of the above post, many people sent me hilarious jokes, all of which helped to lighten the mood ♥].
The Mystery Illness Diaries: It's Hosptial Go-Time
First published on March 19, 2012 at 10:41 a.m.
Update: The MRI came back normal which is good but now my face has begun to twitch. The doctors called and are having me checked into the hospital immediately so that I can see a neurologist. I will be there at least overnight. Here is the list of things we know it is NOT so far: Lyme's disease, lack of B12, thyroid, lead poisoning, blood count is great, lipids are good, MRI is normal, and crap there's a bunch of other things that came back normal that I can't think of without the list in front of me. Symptoms: still have an incredibly hard time walking up any sort of stairs/hill, getting in/out of cars, getting dressed, feet are completely numb can't wear regular shoes, legs numb, painful to walk now, hands getting more numb especially right hand, face is now twitching, still sore/stiff neck/head/back even after a massage yesterday. I will be in St. Mary's hospital Room 8267 in 8 East. I don't have internet on my phone but I asked if I could bring my lap top - if I can't facebook then try my cell :) THANK YOU to everyone for all of your love, support, and prayers, you are making this easier to face and I love you all ♥. And don't worry, I'm gonna beat the fucking shit out of whatever this is. Promise ♥.
Update: The MRI came back normal which is good but now my face has begun to twitch. The doctors called and are having me checked into the hospital immediately so that I can see a neurologist. I will be there at least overnight. Here is the list of things we know it is NOT so far: Lyme's disease, lack of B12, thyroid, lead poisoning, blood count is great, lipids are good, MRI is normal, and crap there's a bunch of other things that came back normal that I can't think of without the list in front of me. Symptoms: still have an incredibly hard time walking up any sort of stairs/hill, getting in/out of cars, getting dressed, feet are completely numb can't wear regular shoes, legs numb, painful to walk now, hands getting more numb especially right hand, face is now twitching, still sore/stiff neck/head/back even after a massage yesterday. I will be in St. Mary's hospital Room 8267 in 8 East. I don't have internet on my phone but I asked if I could bring my lap top - if I can't facebook then try my cell :) THANK YOU to everyone for all of your love, support, and prayers, you are making this easier to face and I love you all ♥. And don't worry, I'm gonna beat the fucking shit out of whatever this is. Promise ♥.
The Mystery Illness Diaries: Not Lyme Disease
First published on March 17, 2012 at 10:23 p.m.
General Update: Well, it is NOT Lyme's disease, so yesterday they had my neck x-rayed and then checked me into the emergency room after work to get an MRI of my head and neck. I won't know any results until Monday, and hopefully by then I'll have a neurologist... my doctor has been awesome about advocating for me and stressing the importance of bumping me up on the waiting list to see someone. Every day it has gotten harder to walk and dress myself. I can't stand up while dressing anymore, and the numbness and fatigue in my legs has made it incredibly difficult to walk up stairs without assistance. Pain has increased too. If I don't get to see a neurologist on Monday I may just end up checking myself into a hospital. Here's hoping they figure out what the hell this is, and take care of it fast.
General Update: Well, it is NOT Lyme's disease, so yesterday they had my neck x-rayed and then checked me into the emergency room after work to get an MRI of my head and neck. I won't know any results until Monday, and hopefully by then I'll have a neurologist... my doctor has been awesome about advocating for me and stressing the importance of bumping me up on the waiting list to see someone. Every day it has gotten harder to walk and dress myself. I can't stand up while dressing anymore, and the numbness and fatigue in my legs has made it incredibly difficult to walk up stairs without assistance. Pain has increased too. If I don't get to see a neurologist on Monday I may just end up checking myself into a hospital. Here's hoping they figure out what the hell this is, and take care of it fast.
Thursday, April 12, 2012
The Mystery Illness Diaries: I Have Good News and Bad News
First published on March 14, 2012 at 10:56 p.m.
Good News and Bad News Time! Good News: Ashley Wakefield and I just bought tickets to Peru! We will be backpacking from Lima to Coast Rica for three months, and will be spending our joint birthdays on Machu Picchu!!!! It's the Honeymoon of a lifetime!!!! Oh LIFE, you are so full of roller-coastery ups and downs, but you sure as hell are never boring ♥.
Oh yeah, and the Bad News is that I might have Lyme's disease (at least that's what we're hoping for).
Good News and Bad News Time! Good News: Ashley Wakefield and I just bought tickets to Peru! We will be backpacking from Lima to Coast Rica for three months, and will be spending our joint birthdays on Machu Picchu!!!! It's the Honeymoon of a lifetime!!!! Oh LIFE, you are so full of roller-coastery ups and downs, but you sure as hell are never boring ♥.
Oh yeah, and the Bad News is that I might have Lyme's disease (at least that's what we're hoping for).
Andy Grammar - Keep Your Head Up
Tuesday, April 10, 2012
The Mystery Illness Diaries
Well HELLO there, little Irish Blog! It's been well over a year since I have updated, and although I have not been faithfully posting, I have not forgotten you. Time for a resurrection!
I started this blog because I wanted to write a little bit about the adventures I was having when I was living and working in Ireland at the end of 2010. Obviously I've been back in the States for over a year now, and a lot has happened since I left the Emerald Isle. One of the biggest life changes that occurred was last July when I suddenly became a runner, working myself from Couch to Half Marathon (13.1 miles) in 3-4 months ♥. My journey as a runner has been pretty life-changing, and I have often thought of recording my many running adventures and mishaps right here in this blog. As soon as I feel healthy enough to run again, I would like to make good on that intention.
Which brings me to my next Major Life Event (as well as the title of this post): my Mystery Illness.
On Sunday, March 4th I began having some incredibly strange symptoms that included numbness in my hands and feet, stiffness and pain in my head/neck/back and jaw, fatigue, nausea, and EXTREME weakness in my legs, to the point where I couldn't walk up and down stairs and struggled to get out of bed. Pretty scary for a girl whose strong legs had recently carried her through two Half Marathons and over 10 other 5k, 10k, and 15k races.
Over the past month I have logged nine days in the hospital, given enough blood samples to quench the thirst of a Zombie Army, have stumped and confused a myriad of doctors and specialists, had an MRI, a spinal tap, and am going to go in for a few CAT Scans later today. And to this day, no one seems to know what is wrong with me, why this all happened in the first place, or what kind of recovery plan I will need to follow. This entire process has been pretty scary at times, and frustrating throughout. But thankfully, I have had an incredible amount of support from family and friends from around the world, literally. Facebook has allowed me to chronicle my Medical Maladies in blog-like status updates that I write fairly frequently. I started writing my updates as an easy way to update the family members and friends who were following my journey all at once, but to be perfectly honest I now write as much for myself as I do for them. It's incredibly therapeutic, to say the least.
I'd like to start posting my updates here on this blog, but rather than try to recount my entire journey now, I'd rather just take all the posts I wrote on facebook and move them over here, one at a time, in chronological order. They will be unedited, copied and pasted in here exactly the way I posted them originally.
In other words, it's time to Tilt The Milk on this bitch ♥. Let the Mystery Illness Diaries begin!
I started this blog because I wanted to write a little bit about the adventures I was having when I was living and working in Ireland at the end of 2010. Obviously I've been back in the States for over a year now, and a lot has happened since I left the Emerald Isle. One of the biggest life changes that occurred was last July when I suddenly became a runner, working myself from Couch to Half Marathon (13.1 miles) in 3-4 months ♥. My journey as a runner has been pretty life-changing, and I have often thought of recording my many running adventures and mishaps right here in this blog. As soon as I feel healthy enough to run again, I would like to make good on that intention.
Which brings me to my next Major Life Event (as well as the title of this post): my Mystery Illness.
On Sunday, March 4th I began having some incredibly strange symptoms that included numbness in my hands and feet, stiffness and pain in my head/neck/back and jaw, fatigue, nausea, and EXTREME weakness in my legs, to the point where I couldn't walk up and down stairs and struggled to get out of bed. Pretty scary for a girl whose strong legs had recently carried her through two Half Marathons and over 10 other 5k, 10k, and 15k races.
Over the past month I have logged nine days in the hospital, given enough blood samples to quench the thirst of a Zombie Army, have stumped and confused a myriad of doctors and specialists, had an MRI, a spinal tap, and am going to go in for a few CAT Scans later today. And to this day, no one seems to know what is wrong with me, why this all happened in the first place, or what kind of recovery plan I will need to follow. This entire process has been pretty scary at times, and frustrating throughout. But thankfully, I have had an incredible amount of support from family and friends from around the world, literally. Facebook has allowed me to chronicle my Medical Maladies in blog-like status updates that I write fairly frequently. I started writing my updates as an easy way to update the family members and friends who were following my journey all at once, but to be perfectly honest I now write as much for myself as I do for them. It's incredibly therapeutic, to say the least.
I'd like to start posting my updates here on this blog, but rather than try to recount my entire journey now, I'd rather just take all the posts I wrote on facebook and move them over here, one at a time, in chronological order. They will be unedited, copied and pasted in here exactly the way I posted them originally.
In other words, it's time to Tilt The Milk on this bitch ♥. Let the Mystery Illness Diaries begin!
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