So this has been a fairly rough week for me and my family. To catch you up: Alex and I are in the process of moving, his grandmother is moving, my Mom is retiring (YAY!), we hit a new road block with MEPS (medical processing required for enlistment into the military), he was sick this week, I had dental work that went very very wrong, a second ER trip, and Christmas is next week. It's been busy on the home front to put it mildly.
In the midst of it all though we've been able to have a few pretty good laughs. Some of those laughs have been in the process of getting to, being in, or leaving the ER but they still made me laugh. My family's motto is you will either laugh or cry and we choose to laugh maniacally. I'd like to share a few of the things that have tickled my funny bone this week. Most are paraphrased to some extent. Also you may not find all or even any of them funny but I did. So here's to a little gallows' humor.
1. Faith (to me): Heather keeps mutilating our Pepparkakor men!
Heather: Well you try picking them up it's harder than it looks!
Me: Why don' t you use a spatula to pick them up?
Heather: Because.
Five minutes later
Faith: Heather you mutilated my stocking!
Heather: Sorry they're hard to pick up ok.
Mom: Why don't you use a spatula then?...
2. (while listening to Geeks get the girl by American Hi-Fi)
Me: This song is strangely catchy.
Alex: Yeah I liked it a lot as teenager.
Me: Well it could be your theme song...
3. Me: But we did an allergy test! It should have been safe.
Someone ( I forgot who): That should have been our first clue it wasn't...
4. Dentist: Ok we're going to have you on a blood pressure machine. ( looks at me very nervously) We might put me on one too.
5. From my allergy bracelet in the ER: See list but definitely NOT prednisone.
6. Me: So how bad was my cough?
Alex: You sounded like a donkey trying to shout and bray at the same time.
Me: I'm so glad I can't hear myself.
7. Alex: She just said thank you, I'm sure if she was feeling better it'd be something much more snarky.
Nurse: That's fine, I love snarky.
8. Doctor: You know it's impossible to be allergic to steroids, especially IV form. Right?
Alex: So we've been told. My wife believes in the impossible I guess.
9. Friend: Well you married him you must have wanted to, right? He didn't cast a spell on you.
Me: No he didn't but I have been asked what I was drinking when I said yes... by his friends...repeatedly.
10. Heather: I'm sick of myself. Can I be someone else for a day?
Me: Sure, as long as your last name is Fitzherbert.
Heather: I can be Eugenia Fitzherbert!!
Me: That is officially your new nickname.
One extra as a bonus
11. Me: Hey Eugenia come here.
Faith: Eugenia?
Heather: (laughing) Yep, Eugenia.
Faith: You two are soo weird.
Me: We know.
Hope you enjoyed the laughs!
Thursday, December 19, 2013
Tuesday, October 15, 2013
I'm not an idiot or a dartboard
So I went back to the allergist's office yesterday. To put it mildly it didn't go well. We went round and round. I got fed up and walked out of the appointment. I have no plans to go back to that clinic. I heard for the millionth time that perfume can't cause anaphylaxis it can only "irritate the lungs". Riiiiiiight. Everytime I hear that I want to scream. I asked what in the world the difference is because I can guarantee you that to the person in the ER or ICU there's not one. I don't care what you call it but I promise perfume can drop me like a stone.
I also got the typical lecture about how often I use my epipen. Its like doctors think that somehow this all escaped me. No I was clearly unaware that using an epipen could seriously impact my heart. It's only my heart that is racing and going berserk. Yep I completely missed that the last time I was hooked to a crash cart after epinephrine was administered. The doctor also did the epinephrine is a serious medicine and should only be used in emergencies lecture. So apparently I also completely missed the signs of when I should use an epipen. I was under the impression I should use it when I'm doing badly enough we need to call 911 or to you know maybe take the medicine early enough so I don't have to call 911. Maybe I was wrong. Maybe next time I should just wait till I stop breathing completely and someone else has to administer it. Yeah that sounds like a fantastic idea. Or I guess I'm just unaware of what anaphylaxis is. I don't know what else to call it when your throat swells closed, you have an audible stridor, severe respiratory distress to the point of turning blue, itchiness in the mouth, blood pressure that drops like a stone, heart rate that goes bananas, turn bright red and burning hot before turning whiter than a sheet from not breathing, tingling in the mouth, tingling in the hands, dizziness, and that wonderful sense of impending doom i.e. utter panic. Last time I checked that was called anaphylaxis. But hey according to the guy with the degree I'm wrong so clearly he's right. Riiiiiiiiiiiight.
I've come to the conclusion that doctors use people like dartboards. (I said doctors not nurses for a reason. If health care was run by EMTs and nurses things would probably go much better.) They throw medicines and treatments at you until something sort of kind of sticks. Well if nothing sticks then clearly you're beyond their help or better yet you're to blame. The greatest irony of the whole situation is that I typically wait till the last minute to use an epipen. I have been flat out fussed at by the EMTs that have shown up at the house because I waited so long. When I have to deal with idiot doctors I want to make them go work a few days in the ER to remember that medicine doesn't always fit into your nice perfect little box. Instead of giving up on the patient or punting them to someone else maybe you, the doctor, are the problem.
I've met a lot of people that wonder why I have such a bad attitude about doctors. Days like yesterday are exactly why I'm such a sour puss. It doesn't make anyone happy to be dumped by one doctor and punted by another. It's frustrating beyond all reason to be lectured again and again. It's infuriating to be poked and prodded endlessly with no answers or end in sight. The worst part is there is no amount of explaining or hospital reports that will convince some doctors. Moments like this are when my desire to take my hands off the wheel comes flaring up. By that I mean I want to say well fine if everything you said is true then I can stop all of this medicine and we'll just see what happens. I can just not bother going to the doctor because clearly you have no idea what to do with me. Based off my hospital records you don't seem to be doing me much good either. It's also moments like this which reinforce my standing opinions of not dealing with doctors until I'm seriously, seriously ill and that modern medicine treats people like one of two things idiots or dartboards. Which I am neither.
I also got the typical lecture about how often I use my epipen. Its like doctors think that somehow this all escaped me. No I was clearly unaware that using an epipen could seriously impact my heart. It's only my heart that is racing and going berserk. Yep I completely missed that the last time I was hooked to a crash cart after epinephrine was administered. The doctor also did the epinephrine is a serious medicine and should only be used in emergencies lecture. So apparently I also completely missed the signs of when I should use an epipen. I was under the impression I should use it when I'm doing badly enough we need to call 911 or to you know maybe take the medicine early enough so I don't have to call 911. Maybe I was wrong. Maybe next time I should just wait till I stop breathing completely and someone else has to administer it. Yeah that sounds like a fantastic idea. Or I guess I'm just unaware of what anaphylaxis is. I don't know what else to call it when your throat swells closed, you have an audible stridor, severe respiratory distress to the point of turning blue, itchiness in the mouth, blood pressure that drops like a stone, heart rate that goes bananas, turn bright red and burning hot before turning whiter than a sheet from not breathing, tingling in the mouth, tingling in the hands, dizziness, and that wonderful sense of impending doom i.e. utter panic. Last time I checked that was called anaphylaxis. But hey according to the guy with the degree I'm wrong so clearly he's right. Riiiiiiiiiiiight.
I've come to the conclusion that doctors use people like dartboards. (I said doctors not nurses for a reason. If health care was run by EMTs and nurses things would probably go much better.) They throw medicines and treatments at you until something sort of kind of sticks. Well if nothing sticks then clearly you're beyond their help or better yet you're to blame. The greatest irony of the whole situation is that I typically wait till the last minute to use an epipen. I have been flat out fussed at by the EMTs that have shown up at the house because I waited so long. When I have to deal with idiot doctors I want to make them go work a few days in the ER to remember that medicine doesn't always fit into your nice perfect little box. Instead of giving up on the patient or punting them to someone else maybe you, the doctor, are the problem.
I've met a lot of people that wonder why I have such a bad attitude about doctors. Days like yesterday are exactly why I'm such a sour puss. It doesn't make anyone happy to be dumped by one doctor and punted by another. It's frustrating beyond all reason to be lectured again and again. It's infuriating to be poked and prodded endlessly with no answers or end in sight. The worst part is there is no amount of explaining or hospital reports that will convince some doctors. Moments like this are when my desire to take my hands off the wheel comes flaring up. By that I mean I want to say well fine if everything you said is true then I can stop all of this medicine and we'll just see what happens. I can just not bother going to the doctor because clearly you have no idea what to do with me. Based off my hospital records you don't seem to be doing me much good either. It's also moments like this which reinforce my standing opinions of not dealing with doctors until I'm seriously, seriously ill and that modern medicine treats people like one of two things idiots or dartboards. Which I am neither.
Thursday, October 3, 2013
I like those odds
Some days I really think that if I wasn't Mormon I would play the lottery. One in a million odds seem to be my specialty. I can give a great example. Yesterday I had a methacholine challenge test. If you're scratching your head wondering what that is don't feel bad. I'd never heard of it either until my allergist mentioned it. It's to confirm or rule out a diagnosis of asthma. It's important to know if you're dealing with asthma and allergies or asthma-like symptoms and allergies.
The premise of the test is that a pulmonary function test (pft) is performed to get a baseline. Then you breathe in a saline solution. Another pft is performed. Finally in stages you breathe in methacholine and take another pft after each stage. In theory what should happen in someone with asthma is the following: the lungs should react and there may be mild upper airway constriction. It causes a very distinct and noticeable drop in pulmonary function. If they see this drop in pulmonary functions then it's considered a positive test result which is an absolute indicator of asthma. Now it should be noted that a negative test result doesn't necessarily completely rule out asthma it just argues against asthma.
In theory no one should have an allergic reaction to methacholine. That should have been our first clue. The test has been around since the '40s so it's considered very safe. Well you're looking at one of the very few people to manage to buck that trend. The test was going fine which should have been the first sign something was bound to go wrong. I'd had the first dose of methacholine administered to me and the pft done. While I waited for the next dose I started coughing. Now that isn't at all surprising I'd been coughing already for two days from being off most of my medications. Also methacholine is known to cause cough in some people. The problem is that methacholine should respond almost immediately to albuterol.
When I started to flush the respiratory tech, Micheal, started to get a little panicky. I can't blame him, if you've ever seen my list of allergies you might panic too. Then I asked the question that really made him panic, it is normal to feel itchy? That was the big red flag that something was going wrong during this test. So he started a nebulizer treatment but my coughing got worse. This was the point he switched to oxygen and paged the doctor. I managed to get two doctors and another tech in the room. Benadryl, oxygen, and a little bit of time later I was back to stable again. I did manage to give them quite the scare though with my heart rate. It was bouncing all over the place from 105bpm up to 140 bpm and everywhere in between.On a positive note the pulse oximeter didn't register a drop in O2 saturation so that was good.
So the moral of the story is that it is unlikely that I have asthma. The evidence just doesn't support it. Do I have something that looks and acts remarably like asthma, yep. Is it actually asthma? Probably not. Also they were able to draw blood to check a particular level in my blood. It's called a serum tryptase level. For several of the diseases they are considering an elevated level is a clear indicator. The other moral of the story is that I run the odds and well. If there is a one in a million chance of it happening you might want to plan on it with me.
The premise of the test is that a pulmonary function test (pft) is performed to get a baseline. Then you breathe in a saline solution. Another pft is performed. Finally in stages you breathe in methacholine and take another pft after each stage. In theory what should happen in someone with asthma is the following: the lungs should react and there may be mild upper airway constriction. It causes a very distinct and noticeable drop in pulmonary function. If they see this drop in pulmonary functions then it's considered a positive test result which is an absolute indicator of asthma. Now it should be noted that a negative test result doesn't necessarily completely rule out asthma it just argues against asthma.
In theory no one should have an allergic reaction to methacholine. That should have been our first clue. The test has been around since the '40s so it's considered very safe. Well you're looking at one of the very few people to manage to buck that trend. The test was going fine which should have been the first sign something was bound to go wrong. I'd had the first dose of methacholine administered to me and the pft done. While I waited for the next dose I started coughing. Now that isn't at all surprising I'd been coughing already for two days from being off most of my medications. Also methacholine is known to cause cough in some people. The problem is that methacholine should respond almost immediately to albuterol.
When I started to flush the respiratory tech, Micheal, started to get a little panicky. I can't blame him, if you've ever seen my list of allergies you might panic too. Then I asked the question that really made him panic, it is normal to feel itchy? That was the big red flag that something was going wrong during this test. So he started a nebulizer treatment but my coughing got worse. This was the point he switched to oxygen and paged the doctor. I managed to get two doctors and another tech in the room. Benadryl, oxygen, and a little bit of time later I was back to stable again. I did manage to give them quite the scare though with my heart rate. It was bouncing all over the place from 105bpm up to 140 bpm and everywhere in between.On a positive note the pulse oximeter didn't register a drop in O2 saturation so that was good.
So the moral of the story is that it is unlikely that I have asthma. The evidence just doesn't support it. Do I have something that looks and acts remarably like asthma, yep. Is it actually asthma? Probably not. Also they were able to draw blood to check a particular level in my blood. It's called a serum tryptase level. For several of the diseases they are considering an elevated level is a clear indicator. The other moral of the story is that I run the odds and well. If there is a one in a million chance of it happening you might want to plan on it with me.
Monday, September 30, 2013
Things you didn't know
On a completely unrelated but still awesome note my blog made it to more than 1000 page views! I find this both encouraging and awesome. It's always nice to know someone is reading. I hope that this blog dispenses advice, humor, updates, and an insight into my life. I've noticed more and more lately that many of the people in my life are struggling through some tough things. It seems that life has been pretty hard on all of us lately. It reminds me of a quote I saw recently, "Be kind to those you meet. We're all fighting the hardest battle we've ever faced, life."
I've also found that the people I think of as strong struggle. I have no doubt that when we finally see those strong outer veneers crack there's been a world of struggles that preceded that moment. To me it's kind of like my back problems. If you were unaware I actually have pretty severe back problems. There are thankfully and thanks to an amazing chiropractor some good spots in my back. However there are also some serious problem areas.
It's something I'm always surprised that people don't know about me. Currently my neck has lost half the amount of curvature it should have. It's slowly becoming completely straight which causes a host of problems. My spine is shifted to the side between my shoulder blades. I have three discs that are bulging, they're symptomatic in case you wondered. Also at the base of my spine it curves to the right pretty drastically. It's actually visible on an x-ray how much it twists to the right. What that amounts to is that my nerves are being pinched in two spots on my spine. This causes numbness is both my right hand, right arm and right leg. My lower back is usually the more painful and problematic of the two areas. It's become enough of a problem I'm having a nerve block next week.
I know to many people this seems drastic. The problem is first that I'm ridiculously allergic to steroids. I already have a known allergy to at least two steroids. Obviously knowing that my doctor isn't going to risk trying a third out. Also when I say allergic I mean anaphylactic I will die allergic not it bothers my stomach. So that leaves a nerve block as the next option of how to deal with the pain. The hope is that once we deal with the pain I will be able to do things to regain my mobility which is pretty much at nill.
The point of this analogy is that my back problems are a serious problem that effect ( insert affect if that's the correct one I can never remember which is right when) me daily. However it's something that I have up until recently managed to not talk about. Looking at me you might never guess how bad the problem really is. I mean I've avoided the topic so well people that live with me were floored that I was hurting bad enough to go to a pain management clinic. That's often the problem with the problems in our lives. We face them alone until we can't anymore. That's the moment people see the crack in that strong outer veneer.
I can't tell people to be open about all the problems in their lives. Actually I won't say that because I try not to give advice I know I wouldn't do. But if you're reading this blog then I want you to know something. You are not alone. No matter how overwhelming the problems in your life seem or how good you've become at hiding them there's always someone you can reach out to. I can't promise to hear you very well but I can promise I listen extremely well.
I've also found that the people I think of as strong struggle. I have no doubt that when we finally see those strong outer veneers crack there's been a world of struggles that preceded that moment. To me it's kind of like my back problems. If you were unaware I actually have pretty severe back problems. There are thankfully and thanks to an amazing chiropractor some good spots in my back. However there are also some serious problem areas.
It's something I'm always surprised that people don't know about me. Currently my neck has lost half the amount of curvature it should have. It's slowly becoming completely straight which causes a host of problems. My spine is shifted to the side between my shoulder blades. I have three discs that are bulging, they're symptomatic in case you wondered. Also at the base of my spine it curves to the right pretty drastically. It's actually visible on an x-ray how much it twists to the right. What that amounts to is that my nerves are being pinched in two spots on my spine. This causes numbness is both my right hand, right arm and right leg. My lower back is usually the more painful and problematic of the two areas. It's become enough of a problem I'm having a nerve block next week.
I know to many people this seems drastic. The problem is first that I'm ridiculously allergic to steroids. I already have a known allergy to at least two steroids. Obviously knowing that my doctor isn't going to risk trying a third out. Also when I say allergic I mean anaphylactic I will die allergic not it bothers my stomach. So that leaves a nerve block as the next option of how to deal with the pain. The hope is that once we deal with the pain I will be able to do things to regain my mobility which is pretty much at nill.
The point of this analogy is that my back problems are a serious problem that effect ( insert affect if that's the correct one I can never remember which is right when) me daily. However it's something that I have up until recently managed to not talk about. Looking at me you might never guess how bad the problem really is. I mean I've avoided the topic so well people that live with me were floored that I was hurting bad enough to go to a pain management clinic. That's often the problem with the problems in our lives. We face them alone until we can't anymore. That's the moment people see the crack in that strong outer veneer.
I can't tell people to be open about all the problems in their lives. Actually I won't say that because I try not to give advice I know I wouldn't do. But if you're reading this blog then I want you to know something. You are not alone. No matter how overwhelming the problems in your life seem or how good you've become at hiding them there's always someone you can reach out to. I can't promise to hear you very well but I can promise I listen extremely well.
Friday, September 27, 2013
The good things in life.
I often talk about the things that are going medically right or wrong with me in my blog. Today I want to change the topic a little. I want to tell you about some of the great things in my life. I really think I don't spend enough time talking about them.
The first one that comes to me is my amazing family. I'm blessed to have four wonderful women I call sisters. These four women are absolutely amazing. I especially want to single out my sister Heather. She's growing into such an amazing woman! She's always upbeat, extremely intelligent and one of the friendliest people I've ever known. We are becoming so bad about quoting Psych or American Outlaws to each other. We always tell each other, "It's NOT contagious," and then promptly burst out laughing.
I'm also blessed to have three sets of parents in my life. I have my actual biological parents, my parents in law, and my second parents the Repshers. Between all three sets there is always someone to give me advice and support me. There is always someone to hold my hand when things get tough or kick my butt when I need it. I can't imagine trying to navigate life without them.
There's a man I want to single out, my Tay-tay. He's my best friend and like a big brother to me. He's my call at three in the morning because I can't sleep. He's the first one to make me laugh and remind me that it always gets better. He gets me into trouble all the time. He's also the person who can make me laugh when I don't think it's possible.I also got him to dance at my wedding which was a miracle!
Another man that is so very important to me is my Pop. My grandfather is one of the best people I've ever known in my life. He has the kind of quiet faith in the Lord that I can only hope to have when I'm his age. He gets me to smile no matter how sick or tired I am. He has often been a father figure in my life. He went to the school plays and award ceremonies. He picked me up from school when I was sick. He's been an incredible constant in my life. He's taught me through example the kind of person I want to be.
There's someone else I want to single out. It's my niece Abby. The boogie bear has an incredible way of making even the hardest day better. A bonk from her or her repetitive hi always make my day. She is without a doubt the cutest little kid I've ever known. It's amazing to me to see how much she changes every time I see her. It also is wonderful to see her doing even a little baby sign language.
For all that is often wrong with my life I still count myself as incredibly blessed.
The first one that comes to me is my amazing family. I'm blessed to have four wonderful women I call sisters. These four women are absolutely amazing. I especially want to single out my sister Heather. She's growing into such an amazing woman! She's always upbeat, extremely intelligent and one of the friendliest people I've ever known. We are becoming so bad about quoting Psych or American Outlaws to each other. We always tell each other, "It's NOT contagious," and then promptly burst out laughing.
I'm also blessed to have three sets of parents in my life. I have my actual biological parents, my parents in law, and my second parents the Repshers. Between all three sets there is always someone to give me advice and support me. There is always someone to hold my hand when things get tough or kick my butt when I need it. I can't imagine trying to navigate life without them.
There's a man I want to single out, my Tay-tay. He's my best friend and like a big brother to me. He's my call at three in the morning because I can't sleep. He's the first one to make me laugh and remind me that it always gets better. He gets me into trouble all the time. He's also the person who can make me laugh when I don't think it's possible.I also got him to dance at my wedding which was a miracle!
Another man that is so very important to me is my Pop. My grandfather is one of the best people I've ever known in my life. He has the kind of quiet faith in the Lord that I can only hope to have when I'm his age. He gets me to smile no matter how sick or tired I am. He has often been a father figure in my life. He went to the school plays and award ceremonies. He picked me up from school when I was sick. He's been an incredible constant in my life. He's taught me through example the kind of person I want to be.
There's someone else I want to single out. It's my niece Abby. The boogie bear has an incredible way of making even the hardest day better. A bonk from her or her repetitive hi always make my day. She is without a doubt the cutest little kid I've ever known. It's amazing to me to see how much she changes every time I see her. It also is wonderful to see her doing even a little baby sign language.
For all that is often wrong with my life I still count myself as incredibly blessed.
Sunday, September 22, 2013
An apple a day keeps the doctor way too close
So my wonderful sister Heather and I were eating lunch together yesterday. I had sliced up a raw apple and made a sandwich. I got two bites into my sandwich and a few bites into my apple. Then my mouth started to tingle and feel weird. As someone with severe allergies that is a major red flag. So I spit the apple out. When I started to cough I took my rescue inhaler and a full dose of liquid Benadryl. When the coughing got worse I took a breathing treatment. Nothing was working so I used my epipen. This was when it started to get scary. The epipen didn't work. At all. This was the point I told Heather to call 911. An epipen should have pretty close to immediate results. If you don't see any improvement in at least three minutes it's not good. Well the EMTs got to the house pretty quickly. By the time they got to the house I was choking and turning blue in the lips.
Normally EMTs get you into the ambulance and then start treating you. Today was a we're treating you where you're laying on your bed. For the first time ever someone got an IV in on the first try without blowing a vein! I really think EMTs should teach other people how to do IVs. Well they did a second shot of epinephrine, a shot of Benadryl and another breathing treatment. It started to help enough that my lips weren't blue anymore.
The EMTs got me moved into the ambulance. Moving me was quite the feat since they had to pull the oxygen mask off and the EMT fireman carried me to the stretcher in the hall. They thought they were going to be able to go non-emergency at first. By the time the second EMT got back to the ambulance after going back into the house to get his bag things went from bad to worse. The second shot of epinephrine should have opened everything up..it didn't. Things were bad enough that a pulse oximeter on my finger didn't work. They couldn't get any readings from it. The EMT increased the oxygen in my mask and did a 3rd breathing treatment.
Since the epi wasn't working he made a potentially dangerous call. He gave me magnesium sulfate which I have never had before. With my list of allergies it was clear he was backed into a corner. EMTs normally treat with a solu medrol pack. Well solu medrol is a form of prednisone which I am deathly allergic to. Because I'm allergic to steroids it severely ties the EMTs hands when they're trying to treat me. He made the right call to try the magnesium sulfate. While it was a risk it would eventually pay off. By the time we were turning off of my street things went from worse to life threatening. My airway closed completely. I started choking badly. For the first time I got sedated in the ambulance to facilitate intubation if it came to that. The EMT also needed something to relax me so my heart rate could come down some and I could calm down some. I was understandably freaked out and it was not helping my breathing.
I've had EMTs consider intubating before but this was the closest I've ever gotten to it. The EMT had everything out and ready to intubate when I finally turned a corner. The medicine finally started to take effect. By the time we reached the ER I was starting to stabilize. The EMT that treated me spoke to Alex. He said that he's been doing that job for 20 years. He said that he has never been that scared or shaken before in his entire career. Alex said that even by then he was still visibly shaken. He told Alex it was the first time after getting a patient to the hospital that he had to sit down and collect himself.
He was also going to do something for us that is pretty amazing. Our house is now flagged in the EMS database. So if I call and am unable to speak they will send EMTs immediately. Also if we find out a clear diagnosis of Mast Cell Activation Disease they actually have a protocol for it. They start an epinephrine drip instead of doing single shots of epi. It is something strangely enough that the EMTs in our area are completely familiar with. On a side note I was taken to the hospital that I usually avoid like the plague. However they improved!! After my last visit went so bad I spoke with their risk management director a few weeks ago. I actually saw the improvements this time around. They called for a physical interpreter and wrote things down till he arrived!! They even used tape not bandaids on me. It was awesome. It's nice to know that an ER can improve and quickly.
In a way all's well that ends well. I'm at home recuperating from the whole mess. I'm grateful to amazing EMTs that I know we're nothing less than inspired on how to help me. I'm also very grateful to an ER that improved and did the right thing by contacting an interpreter immediately. Thankfully this ambulance and ER trip ended ok. I'd love to say I think I'll avoid any more close calls but recent history has shown that just isn't going to happen. I can only hope that those around me will continue to be inspired on how to best help me!
Normally EMTs get you into the ambulance and then start treating you. Today was a we're treating you where you're laying on your bed. For the first time ever someone got an IV in on the first try without blowing a vein! I really think EMTs should teach other people how to do IVs. Well they did a second shot of epinephrine, a shot of Benadryl and another breathing treatment. It started to help enough that my lips weren't blue anymore.
The EMTs got me moved into the ambulance. Moving me was quite the feat since they had to pull the oxygen mask off and the EMT fireman carried me to the stretcher in the hall. They thought they were going to be able to go non-emergency at first. By the time the second EMT got back to the ambulance after going back into the house to get his bag things went from bad to worse. The second shot of epinephrine should have opened everything up..it didn't. Things were bad enough that a pulse oximeter on my finger didn't work. They couldn't get any readings from it. The EMT increased the oxygen in my mask and did a 3rd breathing treatment.
Since the epi wasn't working he made a potentially dangerous call. He gave me magnesium sulfate which I have never had before. With my list of allergies it was clear he was backed into a corner. EMTs normally treat with a solu medrol pack. Well solu medrol is a form of prednisone which I am deathly allergic to. Because I'm allergic to steroids it severely ties the EMTs hands when they're trying to treat me. He made the right call to try the magnesium sulfate. While it was a risk it would eventually pay off. By the time we were turning off of my street things went from worse to life threatening. My airway closed completely. I started choking badly. For the first time I got sedated in the ambulance to facilitate intubation if it came to that. The EMT also needed something to relax me so my heart rate could come down some and I could calm down some. I was understandably freaked out and it was not helping my breathing.
I've had EMTs consider intubating before but this was the closest I've ever gotten to it. The EMT had everything out and ready to intubate when I finally turned a corner. The medicine finally started to take effect. By the time we reached the ER I was starting to stabilize. The EMT that treated me spoke to Alex. He said that he's been doing that job for 20 years. He said that he has never been that scared or shaken before in his entire career. Alex said that even by then he was still visibly shaken. He told Alex it was the first time after getting a patient to the hospital that he had to sit down and collect himself.
He was also going to do something for us that is pretty amazing. Our house is now flagged in the EMS database. So if I call and am unable to speak they will send EMTs immediately. Also if we find out a clear diagnosis of Mast Cell Activation Disease they actually have a protocol for it. They start an epinephrine drip instead of doing single shots of epi. It is something strangely enough that the EMTs in our area are completely familiar with. On a side note I was taken to the hospital that I usually avoid like the plague. However they improved!! After my last visit went so bad I spoke with their risk management director a few weeks ago. I actually saw the improvements this time around. They called for a physical interpreter and wrote things down till he arrived!! They even used tape not bandaids on me. It was awesome. It's nice to know that an ER can improve and quickly.
In a way all's well that ends well. I'm at home recuperating from the whole mess. I'm grateful to amazing EMTs that I know we're nothing less than inspired on how to help me. I'm also very grateful to an ER that improved and did the right thing by contacting an interpreter immediately. Thankfully this ambulance and ER trip ended ok. I'd love to say I think I'll avoid any more close calls but recent history has shown that just isn't going to happen. I can only hope that those around me will continue to be inspired on how to best help me!
Saturday, September 21, 2013
Steriods are still a bad idea
So we all know that I'm very, very, very allergic to certain medications. If you were somehow unaware of this well...now you know. Several of the medications I'm allergic to are completely normal allergies like penicillin. Other medications I'm allergic to are less normal like oxycontin. Then there are a few that make the list that make zero sense as to how I'm allergic to them. Case in point: prednisone. This is a medication that is indigenous. There should be no possible way to be allergic to it. It's even the medication they give in the ER for someone having an allergic reaction.
Somehow though my body has managed to be allergic to it. Not just kind of allergic or mildly allergic to it. Oh no it's one of my if I take this medicine I will die allergies. If you think I'm kidding just ask my parent's about the last time I was given a predisone. It's not even that I'm allergic to just one form of it. Nope I'm allergic to every possible form in the entire predisone family. I've had it orally in tablet and liquid form. I've even had it in my IV before. I reacted to every single kind and badly.
Because of this uniqueness my pharmacy red flags any and all steroids. My pharmacists takes me even trying something steroidal very seriously. On that note my allergist really wanted me to try Flonase. Well Flonase is a corticosteroid. This meant that the pharmacy plays phone tag with me and the doctor's office. First they call the doctor's office to make sure they know I'm allergic to steroids and ask if there is an alternative medicine that I could be prescribed. They then call me to make sure I know this medication is red flagged as either a known allergy or a very very very likely allergy.
In the case of Flonase the possible benefits if it worked would be huge. Therefore we weighed the risks and went ahead with it. My pharmacist spoke to me when I picked the medicine up. She explained to take a tiny tester dose with an epipen at the ready. She made sure I knew what to do if I went into anaphylactic shock. She really didn't want to give me the medicine but as an adult I'm allowed to make those kinds of potentially stupid decisions. Well to absolutely no one's surprise I reacted badly to the Flonase. An epipen, breathing treatments, benadryl, rescue inhaler, and 3 kinds of itch cream later I'm returning to normal. I even got to skip going to the ER. I know I'm such a rebel not going to the ER after taking an epipen. Unfortunately that means that steroids continue to be a huge NO-NO.
Somehow though my body has managed to be allergic to it. Not just kind of allergic or mildly allergic to it. Oh no it's one of my if I take this medicine I will die allergies. If you think I'm kidding just ask my parent's about the last time I was given a predisone. It's not even that I'm allergic to just one form of it. Nope I'm allergic to every possible form in the entire predisone family. I've had it orally in tablet and liquid form. I've even had it in my IV before. I reacted to every single kind and badly.
Because of this uniqueness my pharmacy red flags any and all steroids. My pharmacists takes me even trying something steroidal very seriously. On that note my allergist really wanted me to try Flonase. Well Flonase is a corticosteroid. This meant that the pharmacy plays phone tag with me and the doctor's office. First they call the doctor's office to make sure they know I'm allergic to steroids and ask if there is an alternative medicine that I could be prescribed. They then call me to make sure I know this medication is red flagged as either a known allergy or a very very very likely allergy.
In the case of Flonase the possible benefits if it worked would be huge. Therefore we weighed the risks and went ahead with it. My pharmacist spoke to me when I picked the medicine up. She explained to take a tiny tester dose with an epipen at the ready. She made sure I knew what to do if I went into anaphylactic shock. She really didn't want to give me the medicine but as an adult I'm allowed to make those kinds of potentially stupid decisions. Well to absolutely no one's surprise I reacted badly to the Flonase. An epipen, breathing treatments, benadryl, rescue inhaler, and 3 kinds of itch cream later I'm returning to normal. I even got to skip going to the ER. I know I'm such a rebel not going to the ER after taking an epipen. Unfortunately that means that steroids continue to be a huge NO-NO.
Saturday, September 14, 2013
My normal is NOT normal
I had an two experiences yesterday that reminded me that what has become normal to me isn't normal. The first happened during my 5 hour doctor visit. Yes you read that right it really says 5 hour. I'm seeing a new allergist because my last allergist quit on me. He decided that he simply couldn't manage my case. While I met with the fellow working under the main doctor it hit. As I rattled off my medical history even just over the last 3 years it is just ridiculous to be honest.
Most of the time I don't stop to think about how sick I've been. When I have to tell someone else about it though I notice. It's those moments that remind me that what has become completely normal to me is NOT normal. I think it's worse when this moment happens with a medical professional. The average person doesn't have a full understanding of how close some of the close calls have been or how unusual it all is. A medical professional is all too aware of both. The doctor did a lot of the wide eyed are you really telling me the truth look? It's usually the seriousness in my face that clues them in that I am not joking, lying or exaggerating. If they were worried before they realize that I'm completely serious it only intensifies. He handled it fairly well being a still new doctor. I have this sinking suspicion that I will be the case he's still talking about ten years from now because it's just so darn weird.
The second experience was when we stopped by Alex's recruiter's office to finish up more paperwork. The recruiter was wearing cologne... Thankfully we caught it fast as I sprinted out of his office and to the car for the liquid Benadryl. Liquid Benadryl, AC in the car and my rescue inhaler later I was doing ok. When I came back into the office about fifteen minutes later I sat on the opposite end of it from the recruiter. But that's not what reminded me of why my life is very very far from normal. That has become par for the course. It was when I asked the recruiter a question. I asked, "If something happens and he needs to be contacted how do I do that?"
I'm sure that as a recruiter he's answered that question countless times. However it was the look on his face that made this different. He had that wide eyed look of understanding. It's amazing to watch someone's face as the wheels begin to turn and click. He realized that I wasn't asking just to know or in an abstract maybe I'll need this at some point way. I asked in a I know I'm going to need this I was just in the ICU two weeks ago way and it kind of freaked him out. That's when I'm reminded that my life isn't normal at all. I think it says something that you can unnerve someone who has been in the military for decades with a question. I'm not sure if it's a good something or a bad something but it says something. At the very least it says loud and clear my normal is NOT normal.
Most of the time I don't stop to think about how sick I've been. When I have to tell someone else about it though I notice. It's those moments that remind me that what has become completely normal to me is NOT normal. I think it's worse when this moment happens with a medical professional. The average person doesn't have a full understanding of how close some of the close calls have been or how unusual it all is. A medical professional is all too aware of both. The doctor did a lot of the wide eyed are you really telling me the truth look? It's usually the seriousness in my face that clues them in that I am not joking, lying or exaggerating. If they were worried before they realize that I'm completely serious it only intensifies. He handled it fairly well being a still new doctor. I have this sinking suspicion that I will be the case he's still talking about ten years from now because it's just so darn weird.
The second experience was when we stopped by Alex's recruiter's office to finish up more paperwork. The recruiter was wearing cologne... Thankfully we caught it fast as I sprinted out of his office and to the car for the liquid Benadryl. Liquid Benadryl, AC in the car and my rescue inhaler later I was doing ok. When I came back into the office about fifteen minutes later I sat on the opposite end of it from the recruiter. But that's not what reminded me of why my life is very very far from normal. That has become par for the course. It was when I asked the recruiter a question. I asked, "If something happens and he needs to be contacted how do I do that?"
I'm sure that as a recruiter he's answered that question countless times. However it was the look on his face that made this different. He had that wide eyed look of understanding. It's amazing to watch someone's face as the wheels begin to turn and click. He realized that I wasn't asking just to know or in an abstract maybe I'll need this at some point way. I asked in a I know I'm going to need this I was just in the ICU two weeks ago way and it kind of freaked him out. That's when I'm reminded that my life isn't normal at all. I think it says something that you can unnerve someone who has been in the military for decades with a question. I'm not sure if it's a good something or a bad something but it says something. At the very least it says loud and clear my normal is NOT normal.
Friday, September 6, 2013
It is
It is...
More medicine than you ever thought you could take
More shots than you ever thought you could endure
Blown veins and blood tests
Bruises and IV holes
3 a.m.s of sleepless pain and 3 p.m.s of exhaustion
Checking every ingredient in every food that touches your lips
Knowing nothing is ever completely safe
When walking in the park is a dangerous activity
Hydrocortisone for the itching
Benadryl in every form
Barely healing from the last ER visit when you have to go back
Ambulance rides that terrify you
A spouse who hears those awful words, we're doing all we can
Nights in the ICU
Machines that breathe for you
Gratitude for what you do have
Laughter even in the worst of times
Faith that there is a plan even when you can't see it
Refusing to wallow in self pity
Getting up and getting dressed every day no matter how sick you feel
Making the bed and doing the dishes to feel human again
A wonderful dog that always makes you smile
An incredible family
A spouse who holds your hand through the long nights
Believing that even when you can't see God's hand you can trust his heart
More medicine than you ever thought you could take
More shots than you ever thought you could endure
Blown veins and blood tests
Bruises and IV holes
3 a.m.s of sleepless pain and 3 p.m.s of exhaustion
Checking every ingredient in every food that touches your lips
Knowing nothing is ever completely safe
When walking in the park is a dangerous activity
Hydrocortisone for the itching
Benadryl in every form
Barely healing from the last ER visit when you have to go back
Ambulance rides that terrify you
A spouse who hears those awful words, we're doing all we can
Nights in the ICU
Machines that breathe for you
Gratitude for what you do have
Laughter even in the worst of times
Faith that there is a plan even when you can't see it
Refusing to wallow in self pity
Getting up and getting dressed every day no matter how sick you feel
Making the bed and doing the dishes to feel human again
A wonderful dog that always makes you smile
An incredible family
A spouse who holds your hand through the long nights
Believing that even when you can't see God's hand you can trust his heart
Thursday, September 5, 2013
Hospitals give the best bruises
I used to be a fairly athletic person and in so doing I would get
bruises. I have also accumulated my fair share of bruises from pure
klutzy lack of coordination. However none of the bruises I've gotten
from sports or klutziness begin to compare with the bruises I get
when hospitals are involved. Hospitals really do give the best
bruises. The Sunday before Labor Day was a pretty typical Sunday. I made a
new record! Twenty minutes in Church before I had to use a ridiculous
amount of Benadryl and mountain dew. I also started to turn blue in
the face, not cool right. Well after a lot of medicine and sleep I
woke up Labor Day doing less than great. After a breathing treatment
I was feeling a little better. I had made plans to spend time with my
mom on Labor Day. My mom and I decided the safest activity we could
think about was a walk in our local park.
A walk in the park should be safe right? Wrong. We made it once around the track before I started coughing and turning red. We headed to a Walgreens to try my caffeine and Benadryl avoidance method. Well don't be shocked but it didn't work. I had to use my epi-pen and the Walgreens staff called 911. We might have been ok without calling an ambulance but the friendly lady trying to help me had perfume on. An ambulance ride involving a lot of medicine later I landed in the ER... AGAIN. ARRGH! Although this was the best ER visit I've ever had though. They whipped out the relay computer immediately, it was awesome! A chest x-ray, more medicine, two blown veins from a nurse trying to take my blood, and a few hours later I was doing more or less better. However it came back and with a vengeance too. At that point I had to be given more epi and Benadryl. My amazing home teacher came to give me a blessing in the midst of all of this. Once we hit that third shot of epinephrine in less than eight hours it was decided my butt was being admitted to the hospital. Thankfully I had picked the ER where my regular doctor has admitting privileges. By the time they were ready to move me up to a regular room I was stable.
We got up to the floor and I was wheeled into the room. That was when to pardon the expression but all hell broke loose. The guy moving me didn't realize I had come into the ER for anaphylaxis. They had tried to move me into a room that had been cleaned minutes before with heavy floral cleaners. I was quickly wheeled into another room as I went back into anaphylactic shock. Thankfully the guy moving me was trained as an EMT. The nurses around me thought it was an asthma attack but he knew better. He basically ignored them and broke into their crash cart for epinephrine because none had been authorized on the floor I was sent to. When he gave me my fourth shot of epi in less than twelve hours my heart went berserk.
They cut my top off of me and quickly hooked me up to a crash cart. I was really bummed to lose another of my nice tank tops from Utah to the hospital. It was necessary though since my heart rate hit 174 bpm which is edging right into the danger zone for tachycardia becoming cardiac arrest. My heart rate went from about 85 bpm to 174 bpm in less than ten minutes. The EMT guy also insisted on putting a second IV in and starting an epi drip. He was trying to avoid giving me any more epi through my leg because of how hard it would hit my heart. The EMT knew that one more shot of epi was severely risking my chances of cardiac arrest. He took charge of the situation since the nurses on the floor seemed very unsure of what to do. I also managed to get every nurse and doctor on the floor crowded into my room all at once so new record there. I was also introduced to a new machine I haven't been familiar with before in all my hospital soujourns. They got a Darth Vader looking mask over my face and had me hooked to a machine called a bipap. Basically what it did was force air through my lungs when it got too difficult for me to breathe on my own. I'm eternally grateful that EMT was at the right place at the right time. I owe him my life.
After the epic fiasco of trying to put me into a regular room I was moved down to ICU where I stayed for the remainder of my time in the hospital. I'm also proud to say the hospital did pretty well with my restricted diet. I had one other attack while in the ICU but even more medicine later I was stable enough to go home. Other than some ugly looking bruises from blown veins and soreness in my leg from having soo much epi I'm doing pretty good all things considered. I'm recuperating at home now and counting my blessings.
A walk in the park should be safe right? Wrong. We made it once around the track before I started coughing and turning red. We headed to a Walgreens to try my caffeine and Benadryl avoidance method. Well don't be shocked but it didn't work. I had to use my epi-pen and the Walgreens staff called 911. We might have been ok without calling an ambulance but the friendly lady trying to help me had perfume on. An ambulance ride involving a lot of medicine later I landed in the ER... AGAIN. ARRGH! Although this was the best ER visit I've ever had though. They whipped out the relay computer immediately, it was awesome! A chest x-ray, more medicine, two blown veins from a nurse trying to take my blood, and a few hours later I was doing more or less better. However it came back and with a vengeance too. At that point I had to be given more epi and Benadryl. My amazing home teacher came to give me a blessing in the midst of all of this. Once we hit that third shot of epinephrine in less than eight hours it was decided my butt was being admitted to the hospital. Thankfully I had picked the ER where my regular doctor has admitting privileges. By the time they were ready to move me up to a regular room I was stable.
We got up to the floor and I was wheeled into the room. That was when to pardon the expression but all hell broke loose. The guy moving me didn't realize I had come into the ER for anaphylaxis. They had tried to move me into a room that had been cleaned minutes before with heavy floral cleaners. I was quickly wheeled into another room as I went back into anaphylactic shock. Thankfully the guy moving me was trained as an EMT. The nurses around me thought it was an asthma attack but he knew better. He basically ignored them and broke into their crash cart for epinephrine because none had been authorized on the floor I was sent to. When he gave me my fourth shot of epi in less than twelve hours my heart went berserk.
They cut my top off of me and quickly hooked me up to a crash cart. I was really bummed to lose another of my nice tank tops from Utah to the hospital. It was necessary though since my heart rate hit 174 bpm which is edging right into the danger zone for tachycardia becoming cardiac arrest. My heart rate went from about 85 bpm to 174 bpm in less than ten minutes. The EMT guy also insisted on putting a second IV in and starting an epi drip. He was trying to avoid giving me any more epi through my leg because of how hard it would hit my heart. The EMT knew that one more shot of epi was severely risking my chances of cardiac arrest. He took charge of the situation since the nurses on the floor seemed very unsure of what to do. I also managed to get every nurse and doctor on the floor crowded into my room all at once so new record there. I was also introduced to a new machine I haven't been familiar with before in all my hospital soujourns. They got a Darth Vader looking mask over my face and had me hooked to a machine called a bipap. Basically what it did was force air through my lungs when it got too difficult for me to breathe on my own. I'm eternally grateful that EMT was at the right place at the right time. I owe him my life.
After the epic fiasco of trying to put me into a regular room I was moved down to ICU where I stayed for the remainder of my time in the hospital. I'm also proud to say the hospital did pretty well with my restricted diet. I had one other attack while in the ICU but even more medicine later I was stable enough to go home. Other than some ugly looking bruises from blown veins and soreness in my leg from having soo much epi I'm doing pretty good all things considered. I'm recuperating at home now and counting my blessings.
Saturday, August 31, 2013
I don't bite and he's not blind.
So there are two questions that I get at a pretty much nonstop rate.
1. Are you blind?
2. Will he bite me? (Meaning Riddick while he's working.)
If either question sounds ridiculous to you then you're not alone. I tend to agree. In all fairness, seeing eye dogs are what people automatically picture when they think of a service dog. The funny thing about that is that hearing dogs outnumber guide dogs by as much as 3 to 1. Most people see a service dog and assume oh that person is blind. It's only worse when I wear sunglasses. I also find that people assume I'm blind when I don't notice or respond to their speaking to me. I guess they think I'm not responding because I can't see them not because I didn't hear them. Even if it is somewhat understandable it's still really annoying. It's especially annoying when someone asks me this after looking me in the eyes and I look back. I've decided to design a t-shirt that says: If you can read this you're as blind as I am. It's the best way I can think of to deal with this question.
The second question is the infinitely more obnoxious one. It drives me crazy to have people ask if Riddick is going to bite them. If he were doing something threatening I could maybe understand the question. However this question is almost always posed to me when he is just lying on the floor. More often that not people ask me that when he is taking a nap and drooling. I look at my not even remotely scary dog and then back at the person. I just want to say, "Seriously? He's taking a nap with his stuffed hedgehog, and you think he's going to bite you? What lead you to that bright conclusion? His drooling?" Thankfully, I don't typically smart off to people. Normally I politely say, "No, he's a trained service animal. They don't bite." Occasionally I sign something that may or may not be particularly polite.
So please, if you're out and about, don't ask those two questions when you see a person with their service dog. If nothing else do it as a favor to me! I promise you'll be doing that pair a favor by skipping the obnoxious questions.
1. Are you blind?
2. Will he bite me? (Meaning Riddick while he's working.)
If either question sounds ridiculous to you then you're not alone. I tend to agree. In all fairness, seeing eye dogs are what people automatically picture when they think of a service dog. The funny thing about that is that hearing dogs outnumber guide dogs by as much as 3 to 1. Most people see a service dog and assume oh that person is blind. It's only worse when I wear sunglasses. I also find that people assume I'm blind when I don't notice or respond to their speaking to me. I guess they think I'm not responding because I can't see them not because I didn't hear them. Even if it is somewhat understandable it's still really annoying. It's especially annoying when someone asks me this after looking me in the eyes and I look back. I've decided to design a t-shirt that says: If you can read this you're as blind as I am. It's the best way I can think of to deal with this question.
The second question is the infinitely more obnoxious one. It drives me crazy to have people ask if Riddick is going to bite them. If he were doing something threatening I could maybe understand the question. However this question is almost always posed to me when he is just lying on the floor. More often that not people ask me that when he is taking a nap and drooling. I look at my not even remotely scary dog and then back at the person. I just want to say, "Seriously? He's taking a nap with his stuffed hedgehog, and you think he's going to bite you? What lead you to that bright conclusion? His drooling?" Thankfully, I don't typically smart off to people. Normally I politely say, "No, he's a trained service animal. They don't bite." Occasionally I sign something that may or may not be particularly polite.
So please, if you're out and about, don't ask those two questions when you see a person with their service dog. If nothing else do it as a favor to me! I promise you'll be doing that pair a favor by skipping the obnoxious questions.
Tuesday, August 27, 2013
Lucky Number 7
So as you probably know we've had an exciting few days in the Bambas clan. I think we're all firm believers that excitement is overrated at this point. To give you a quick recap in case you missed it: thursday I had a bad reaction in the car but avoided an epi-pen. Friday night I had a terrible reaction and had to be transported to the ER via ambulance. Saturday I had a bad reaction and needed an epi-pen but avoided the ER. Sunday was all Alex. He was bitten by a dog and had to get 13 stitches in his chin. They were mostly just below his lip inside and out. Before anyone freaks out it WASN'T riddick who did the biting. Add in an almost car accident with Karen on Friday and one with Alex on Monday. Also our car battery died and had to be replaced last week. When it rains it really, really pours around here.
All of that excitement aside I wanted to take note of something. Friday night was the 7th time since April that I've gone into full blown anaphylactic shock. This was the 7th time that I ended up in the ER or admitted to the hospital for a severe allergic reaction. I personally think there's something pretty remarkable about my lucky number 7, I'm still kicking. While it's been a trying time there have been numerous silver linings in the clouds. Here are five of my silver linings that make getting through the rough patches possible. If you're struggling through your own rough patch hopefully these will bring a smile to your day!
Silver Linings
1. I haven't died!
2. I have an amazing family.
3. I have some incredible friends. Tay-Tay, Mady, Krystal, Cammie and many others who are just awesome.
4. I have a wonderful husband!
5. I have the gospel of Jesus Christ.
All of that excitement aside I wanted to take note of something. Friday night was the 7th time since April that I've gone into full blown anaphylactic shock. This was the 7th time that I ended up in the ER or admitted to the hospital for a severe allergic reaction. I personally think there's something pretty remarkable about my lucky number 7, I'm still kicking. While it's been a trying time there have been numerous silver linings in the clouds. Here are five of my silver linings that make getting through the rough patches possible. If you're struggling through your own rough patch hopefully these will bring a smile to your day!
Silver Linings
1. I haven't died!
2. I have an amazing family.
3. I have some incredible friends. Tay-Tay, Mady, Krystal, Cammie and many others who are just awesome.
4. I have a wonderful husband!
Friday, August 23, 2013
Close Calls
I had a blog post almost completely written and ready to be posted. The topic was whether or not to epi-pen. In it I freely admitted that I'm not an epi-pen first ask questions at the ER later kind of person. I also freely admitted that I try everything in my bag of tricks before I concede to use an epi-pen. Tonight I got a reality check about the dangers of that mindset. I had just finished eating dinner with my parents when the reaction started. Out of nowhere I suddenly felt itchy, flushed, and my throat felt like it was constricting. I tried everything in my bag of tricks when I probably should have just used the epi-pen. By the time I used my epi-pen the reaction was very far gone.
If you know me well you know that I've had a number of close calls over the years. I'm more familiar with hospitals and ERs than I'd care to be. Tonight was one of the closest calls I've ever had. I had to have a second epi-pen, a shot of benadryl and a shot of valium just in the ambulance. Inside the ambulance my condition went from bad to worse and it was an intense ride to the hospital. There was apparently a period of time that the EMTs were unable to get a blood pressure on me. I also went into such severe respiratory distress that they used a stethoscope to make sure I was still breathing. We reached the point where they were considering intubation. Thankfully I stabilized! I would be lying if I said I wasn't shaken by the whole thing. It was a stark reminder that the space between when a reaction starts and help arrives is longer than you think. While the space between a reaction starting and things getting out of control is much smaller than you think.
The whole thing was also a reminder of something else. I don't often talk about it but I have a very real fear of dying. I have an honest fear of dying from something like what happened tonight. More often than not I'm able to keep that fear in check with a healthy dose of perspective. The chances of me dying from anaphylaxis are actually pretty low. The fact that trained EMTs were there to make sure I made it through the ordeal also brings more of that perspective I often need to the party. I have to say though that no amount of perspective completely erases the fear from your mind. It does make me think long and hard sometimes. It strengthens my resolve to live my life so that there aren't any regrets on the table. It also reminds me to be grateful that God must think I've got more to do! Hopefully I can go a little longer without a close call from this point on.
If you know me well you know that I've had a number of close calls over the years. I'm more familiar with hospitals and ERs than I'd care to be. Tonight was one of the closest calls I've ever had. I had to have a second epi-pen, a shot of benadryl and a shot of valium just in the ambulance. Inside the ambulance my condition went from bad to worse and it was an intense ride to the hospital. There was apparently a period of time that the EMTs were unable to get a blood pressure on me. I also went into such severe respiratory distress that they used a stethoscope to make sure I was still breathing. We reached the point where they were considering intubation. Thankfully I stabilized! I would be lying if I said I wasn't shaken by the whole thing. It was a stark reminder that the space between when a reaction starts and help arrives is longer than you think. While the space between a reaction starting and things getting out of control is much smaller than you think.
The whole thing was also a reminder of something else. I don't often talk about it but I have a very real fear of dying. I have an honest fear of dying from something like what happened tonight. More often than not I'm able to keep that fear in check with a healthy dose of perspective. The chances of me dying from anaphylaxis are actually pretty low. The fact that trained EMTs were there to make sure I made it through the ordeal also brings more of that perspective I often need to the party. I have to say though that no amount of perspective completely erases the fear from your mind. It does make me think long and hard sometimes. It strengthens my resolve to live my life so that there aren't any regrets on the table. It also reminds me to be grateful that God must think I've got more to do! Hopefully I can go a little longer without a close call from this point on.
Gratitude List
I've found that when I'm having a particularly bad day making a gratitude list tends to help. Since today has been rather frustrating I'm taking the time to change my annoyance to gratitude. Here's my list:
1. I have NOT needed my epi-pen today!
2. I haven't needed ANY benadryl today! (Wooohooo!)
3. Alex has a steady job!
4. I haven't had any seizures today!
5. I have a wonderful and crazy family.
6. I have a dog that loves me.
7. I did the dishes and folded laundry today.
8. I've kept up with ALL of my medication today. (Courtesy of the 'calender' on the counter.)
9. I haven't needed my inhaler today.
10. I have an amazing family of friends.
11. I can still sorta hear very very loud music.
12. Hulu has captions.
13. I can watch the Book of Mormon in ASL.
14. I can watch talks and other gospel related stuff in ASL.
15. I have a wonderful husband.
16. I have a best friend who has seen me through almost a decade of ups and downs (Tay-tay that means you).
17. I have a wonderful Grandpa who always believes in me and makes me smile!
18. I have a wonderful extended family.
19. I can't hear but I can still see!
20. I can still laugh.
1. I have NOT needed my epi-pen today!
2. I haven't needed ANY benadryl today! (Wooohooo!)
3. Alex has a steady job!
4. I haven't had any seizures today!
5. I have a wonderful and crazy family.
6. I have a dog that loves me.
7. I did the dishes and folded laundry today.
8. I've kept up with ALL of my medication today. (Courtesy of the 'calender' on the counter.)
9. I haven't needed my inhaler today.
10. I have an amazing family of friends.
11. I can still sorta hear very very loud music.
12. Hulu has captions.
13. I can watch the Book of Mormon in ASL.
14. I can watch talks and other gospel related stuff in ASL.
15. I have a wonderful husband.
16. I have a best friend who has seen me through almost a decade of ups and downs (Tay-tay that means you).
17. I have a wonderful Grandpa who always believes in me and makes me smile!
18. I have a wonderful extended family.
19. I can't hear but I can still see!
20. I can still laugh.
Monday, August 5, 2013
Massive Update Part 1
So one of my amazing friends pointed out to me that she really didn't know what was going on in my life when we talked the other day. So in response I give you the Massive Update Part 1. There has been enough going on lately I think it'll be at least a 2 part update. So first things first I am in fact alive! I find this to be a very encouraging thing. Here's a quick bullet point update of some things going on in my life. I promise more details on the list at a later date:
1. New medicine! Yay! Well maybe, I think, yay.
2. New doctor, I found an allergist.
3. Another full blown "mild anaphylactic shock" (that's my sixth since April)
4. I had to use my epipen while shopping. (Definite booo.)
5. We went to Florida for the coolest family reunion ever.
6. I got a courageous award for doing 70% of the modified fun run walk portion before collapsing with a seizure.
7. Spent 20 hours in a car with my spouse and dog over 4 days.
8. Spent an afternoon at the beach with the whole family!!
9. I see my wonderful amazing niece on Tuesdays. ( Best day of the week in my opinion)
10. Alex has a good job finally!!!!
11. Alex is now working 60+ hours a week, every week.
12. Sadly we were released from teaching Primary.
13. I'm starting independent study classes this month!
14. My new doctor might have an answer to the big question: what the heck is wrong with me!!!!!!!!!
More to come in my next update! Love you all.
1. New medicine! Yay! Well maybe, I think, yay.
2. New doctor, I found an allergist.
3. Another full blown "mild anaphylactic shock" (that's my sixth since April)
4. I had to use my epipen while shopping. (Definite booo.)
5. We went to Florida for the coolest family reunion ever.
6. I got a courageous award for doing 70% of the modified fun run walk portion before collapsing with a seizure.
7. Spent 20 hours in a car with my spouse and dog over 4 days.
8. Spent an afternoon at the beach with the whole family!!
9. I see my wonderful amazing niece on Tuesdays. ( Best day of the week in my opinion)
10. Alex has a good job finally!!!!
11. Alex is now working 60+ hours a week, every week.
12. Sadly we were released from teaching Primary.
13. I'm starting independent study classes this month!
14. My new doctor might have an answer to the big question: what the heck is wrong with me!!!!!!!!!
More to come in my next update! Love you all.
Wednesday, April 24, 2013
Gratitude list
So I'm sure everyone knows that I've been going through a rough patch. Often times it feels like there are more trials than I have patience or strength. However if I've learned anything it is that focusing on the great parts of my life help drown out the problems. So in the spirit of focusing on the silver linings in my clouds here's a list of things I'm grateful for (pictures included):
1. An amazing husband
2. A wonderful family
3. A great best friend/big bro
4. A fantastic furry snuggle buddy
5. An amazing ward family
6. Medicine! (At least the ones I'm NOT allergic to)
7. Incredible friends
8. A loving Heavenly Father who has a plan bigger and better for me than anything I could ever dream up
9. Food that I can eat!!
10. Movies, magazines, books, and anything else that keeps me distracted!
1. An amazing husband
2. A wonderful family
3. A great best friend/big bro
4. A fantastic furry snuggle buddy
5. An amazing ward family
6. Medicine! (At least the ones I'm NOT allergic to)
7. Incredible friends
8. A loving Heavenly Father who has a plan bigger and better for me than anything I could ever dream up
9. Food that I can eat!!
10. Movies, magazines, books, and anything else that keeps me distracted!
Tuesday, April 16, 2013
The Face of Discrimination
While my thoughts and prayers go out to those suffering in Boston I want to discuss another topic today. I want to talk about discrimination a little. While reading news articles I ran across a story I want to try and summarize it for you. Essentially a lesbian couple wanted to stay at a bed and breakfast but the owner said no because of her religious beliefs. The two women decided to sue and they won because of Hawaii's very broad discrimination laws.
It's an interesting case to me for a variety of reasons. One is that I can understand the reluctance of the owner of the bed and breakfast. I can understand how her religious views could influence her business decisions. I also can understand to a degree how the lesbian couple felt. I've been refused service because of my service animal. I've been refused a hotel room actually. I've been told to leave stores or harassed by store managers until I did leave.
The catch is though that the couple in question is making a choice. I didn't choose to loose my hearing. I did choose to get a service animal to help deal with it. However engaging in a lifestyle like homosexuality is a definitive choice. Oddly enough you would think I would agree with the lesbian couple but I don't. I agree with the business owner. I think the best way to solve problems of discrimination isn't always through the legal system. I don't think it's right to trample someone else's rights just to have my own recognized.
Don't misunderstand me, I don't like discrimination and I don't think it's right. However I don't think the government should come in and tell businesses what to do like this. The best way to fix situations like this are to vote with your wallet. If you want a case where it works I have a long list. A great example is Netflix who refused to provide captioning for their online content. They went to court and they won but their refusal cost them a great deal. Netflix has lost huge contracts and countless numbers of subscribers in part because of their decision. It wasn't the courts that changed things it was people voting with their wallets.
If someone tells me that I can't stay in their hotel because of my service animal or that I shouldn't apply for a job because I'm Deaf it's on them. It's their problem of being bigoted idiots. However much I might despise their bigotry they've still got a right to it. Laws and courts won't change discrimination in our country, we will. We will change it when we vote with our wallets and decide for ourselves how we want to deal with it. When we decide how we want to treat other people. Well that's my two cents about it anyway.
It's an interesting case to me for a variety of reasons. One is that I can understand the reluctance of the owner of the bed and breakfast. I can understand how her religious views could influence her business decisions. I also can understand to a degree how the lesbian couple felt. I've been refused service because of my service animal. I've been refused a hotel room actually. I've been told to leave stores or harassed by store managers until I did leave.
The catch is though that the couple in question is making a choice. I didn't choose to loose my hearing. I did choose to get a service animal to help deal with it. However engaging in a lifestyle like homosexuality is a definitive choice. Oddly enough you would think I would agree with the lesbian couple but I don't. I agree with the business owner. I think the best way to solve problems of discrimination isn't always through the legal system. I don't think it's right to trample someone else's rights just to have my own recognized.
Don't misunderstand me, I don't like discrimination and I don't think it's right. However I don't think the government should come in and tell businesses what to do like this. The best way to fix situations like this are to vote with your wallet. If you want a case where it works I have a long list. A great example is Netflix who refused to provide captioning for their online content. They went to court and they won but their refusal cost them a great deal. Netflix has lost huge contracts and countless numbers of subscribers in part because of their decision. It wasn't the courts that changed things it was people voting with their wallets.
If someone tells me that I can't stay in their hotel because of my service animal or that I shouldn't apply for a job because I'm Deaf it's on them. It's their problem of being bigoted idiots. However much I might despise their bigotry they've still got a right to it. Laws and courts won't change discrimination in our country, we will. We will change it when we vote with our wallets and decide for ourselves how we want to deal with it. When we decide how we want to treat other people. Well that's my two cents about it anyway.
Saturday, April 13, 2013
I think I like how I look..well maybe..sorta.. kinda... like how I look
Like many of the best things in my life this was inspired by my sisters. My incredible sister Taylor wrote a very interesting blog about body image. If you're reading my blog, please read hers too! Here's is much better than mine. Here's the link for hers :http://bythevoiceofthispeople.blogspot.com/2013/04/but-but-i-think-i-think-im-beautiful.html. Ok shameless plugging aside, she got me thinking with her blog.
Body image is such a complicated topic but here's my two cents about it. I'm going to be brutally honest in this blog so be prepared. While my sister confessed that she's quite happy with how she looks my confession looks a little different.
Confession: I actually don't like how I look.
I'm short which I hate (seriously even Faith is taller than me!), I could definitely stand to lose a few pounds and inches, and I'm really just not a fan of me. I can list more things I don't like but I'll save us both the time. I've never really liked how I look. That's probably why I married Alex who is my biggest cheerleader. I don't have to like how I look because he does! I never spend more than five or ten minutes on my appearance. There's a great reason for that. Most people are way more distracted by the dog or by my moving hands or the giant hearing aids in my ears or how I sound funny when I talk sometimes. If you don't believe me here's a great story that proves my point.
One day at Disney I was off work and had taken some time with my looks. I thought I looked great. I went out shopping at D23. The woman behind the counter couldn't figure out how my hearing aid charms were connected to me. She thought I had pierced the inside of my ear and couldn't get over how painful she thought that would be. So she asked me why I had pierced my ear like that. Much to her embarrassment I pulled my hearing aid from behind my ear. I've never seen anyone blush that red. She completely missed me because she only saw my aids.
Add the dog in and well you can guess how it goes. I've found it's very hard to find motivation to be enthusiastic about an appearance that most people never notice. I don't think I'm alone in it. Think about it. We spend so much time on the unimportant distractions about a person that we often completely miss them.
So my question to you is how do we change that?
Body image is such a complicated topic but here's my two cents about it. I'm going to be brutally honest in this blog so be prepared. While my sister confessed that she's quite happy with how she looks my confession looks a little different.
Confession: I actually don't like how I look.
I'm short which I hate (seriously even Faith is taller than me!), I could definitely stand to lose a few pounds and inches, and I'm really just not a fan of me. I can list more things I don't like but I'll save us both the time. I've never really liked how I look. That's probably why I married Alex who is my biggest cheerleader. I don't have to like how I look because he does! I never spend more than five or ten minutes on my appearance. There's a great reason for that. Most people are way more distracted by the dog or by my moving hands or the giant hearing aids in my ears or how I sound funny when I talk sometimes. If you don't believe me here's a great story that proves my point.
One day at Disney I was off work and had taken some time with my looks. I thought I looked great. I went out shopping at D23. The woman behind the counter couldn't figure out how my hearing aid charms were connected to me. She thought I had pierced the inside of my ear and couldn't get over how painful she thought that would be. So she asked me why I had pierced my ear like that. Much to her embarrassment I pulled my hearing aid from behind my ear. I've never seen anyone blush that red. She completely missed me because she only saw my aids.
Add the dog in and well you can guess how it goes. I've found it's very hard to find motivation to be enthusiastic about an appearance that most people never notice. I don't think I'm alone in it. Think about it. We spend so much time on the unimportant distractions about a person that we often completely miss them.
So my question to you is how do we change that?
Thursday, April 11, 2013
Life with a service dog Part 1
This is my first post of a few I have in mind about life with a service dog. If you know me you know, have heard of or seen Riddick my service dog. If you don't know me then let me introduce him. Riddick is an approximately 16 months old black and white border collie lab mix rescue dog who rescued me. I get a lot of questions and I mean a lot of questions about what he does and why. So I wanted to take the time to address those questions.
First what does Riddick really do? Riddick is both a hearing dog and a seizure alert dog. That means he pulls double duty every day. His job is to alert me to things I can't hear, which is pretty much everything. He lets me know everything from a person wants my attention to car horns to beeping microwaves. He also is my seizure alert dog. He can sense a seizure up to 5 minutes before it happens. During a seizure he lays on my legs and I hold on to him.
He's even gone so far as to place his paws on either side of my head to prevent me from hitting my head during a seizure. He then proceeds to lick my face and nuzzle me till I wake up. He's also been trained to bark to alert others if I'm having a seizure. One of the most amazing things about Riddick is that he never really goes "off duty" at least not completely. He doesn't need a vest to know I need his help. My husband has seen him jump from tugging rope with him to rushing to my side during a seizure.
The next question I always get is why? Why have a service dog? Riddick helps me safely navigate the world. He makes being out and about much less stressful and much more safe. He's also a huge help at home. Something most people don't know is that home can be the hardest place to navigate. He's my furry best friend and a life saver. While there are times its not possible to bring him with me, like being in a car with someone whose allergic or bringing him in someone's home that's allergic happen I do try my best to always keep him with me. We're still growing and learning together but this is a partnership that will last a lifetime. To conclude Part 1 I want to share a photo I found that is both hilarious and very true to life.
First what does Riddick really do? Riddick is both a hearing dog and a seizure alert dog. That means he pulls double duty every day. His job is to alert me to things I can't hear, which is pretty much everything. He lets me know everything from a person wants my attention to car horns to beeping microwaves. He also is my seizure alert dog. He can sense a seizure up to 5 minutes before it happens. During a seizure he lays on my legs and I hold on to him.
He's even gone so far as to place his paws on either side of my head to prevent me from hitting my head during a seizure. He then proceeds to lick my face and nuzzle me till I wake up. He's also been trained to bark to alert others if I'm having a seizure. One of the most amazing things about Riddick is that he never really goes "off duty" at least not completely. He doesn't need a vest to know I need his help. My husband has seen him jump from tugging rope with him to rushing to my side during a seizure.
The next question I always get is why? Why have a service dog? Riddick helps me safely navigate the world. He makes being out and about much less stressful and much more safe. He's also a huge help at home. Something most people don't know is that home can be the hardest place to navigate. He's my furry best friend and a life saver. While there are times its not possible to bring him with me, like being in a car with someone whose allergic or bringing him in someone's home that's allergic happen I do try my best to always keep him with me. We're still growing and learning together but this is a partnership that will last a lifetime. To conclude Part 1 I want to share a photo I found that is both hilarious and very true to life.
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