Usually the climate here is cold. Back in the day I lived for the heat, longed for it, and despised the cold. Now I cannot get enough of it and for a good reason. Today my friend picked me up and we decided...'hey..there is no gluten free goods at her home so let's pop over to the grocery store.' I was feeling good and very hydrated thanks to a fruit smoothie and a strange iced coffee. All went well until we went our separate ways.
I decided the queue was looking a bit long so I should get it line to save time. She was socializing with a long time friend and the plan made sense. I was standing there swiping my card when it hit me. The 'o no' the heart is starting to go crazy. So I paid, grabbed a free paper, and sat down to look casually healthy. Unfortunately I was not healthy. My heart was going on overdrive and I started to get the white in the vision and feeling of 'my blood is about to all drop down into my new shoes.' So I passed out on the chair/desk thing and bonked my head. Everyone was to busy to notice and I figured, 'hey ho, crisis passed.' Except this time the crisis was NOT done. The fuzziness and world evaporating continued. She caught sight of me and rushed to pay in time to walk over and ask 'are you ok?' "Uh...I think I may need to faint" before promptly doing a facedive to the floor. She caught me before I could go smack into the all-natural food store's rather questionable looking floor.
I have fainted a lot of places and I must say the associates were useless. They looked, went back to their job, and only cared slightly when the soccer moms with their fifteen kids started having mini panic attacks. "I need water, lots of water" and I was laid out on the floor while my friend rushed to find me a bottle. She didn't have time to pay just ran it over to me. I downed two dollars worth in a record thirty seconds and then she went back to pay. Honestly, this is why I said 'go to the water fountain' but she is a hero and financially/literally supported my sinking self.
The head honcho lady showed up to kindly take our bag to the car as my friend was holding up me, my person, and my cane. "My father has vertigo...la de da," is what I heard. I gave the run-down complete with 'I used to be in a wheelchair and I'm glad not to be.' My friend, of course, pointed out the wheelchair was nicer because our purchases could go on my lap. Yes, a human shopping cart.
So here I am writing from her apple in a room colder than most people would care to imagine. I let the heat get to me out in the normal temperature and got the shakes. When they get really bad it looks like I am having a seizure and scares the daylights out of people. They aren't seizures. Actually, I am not entirely sure but I figure, medically they don't seem to be worthy of worrying therefore no need to alert the parents/doctors. After all, I already get treated like I am on the verge of death at home. I don't need the 'she might die/have a seizure' vibe going on as well.
So in keeping with the new positive theme, 'hey ho! It was not a concussion so all is good.'
By the way, paper crane total is somewhere in the forties. I am getting there shaky hands and all.
Monday, August 26, 2013
Thursday, August 22, 2013
Peter & Judith Surname: A New Outlook on Optimism?
Living my life the way I do, I often get a lot of eh...useless comforting comments. The most popular being 'it could be worse.' I know it could be worse. There are days when I am so miserable I watch those ID murder shows and say, "hey, it could be worse...no one has murdered me and I still have all my limbs (even the ones I can't really feel) and I am not suffering from a viral hemorrhagic fever." Then I have the rare day where I am so miserable and grouchy, woe be the idiotic person who gives the 'it could be worse.' They get one hell of an evil eye and the icily delivered pointed statement that a person who can run, drive, and lacks a fancy for large pillboxes better not be saying something so completely stupid.
Most days I live in a limbo of thinking 'it could be worse' and not thinking about it at all. Until I was watching Come Fly With Me (Learn More Here) for about the 18th time. I especially love watching Peter & Judith Surname who are a couple who always have 'the holiday from hell.' Every time I watch I laugh at their antics but a few days ago I really realized something immensely special about their characters. They have the worst luck and yet the greatest sense of optimism. For example, the first time you meet they have had 'the holiday from hell.' They arrive in there cabin on their cruise ship to find it half underwater. Now most people I know would be furious, demand another room, and make us all miserable with their complaints. Peter and Judith's reaction goes (not exact quotes but forgive the memory) We thought ho hum! It's only our bottom halves. (and then decide to enjoy the rest of their vacation). Now that is serious optimism and considering more events which happen, comically delightful.
So what does that have to do with me? Well I am tired of the same old, same old and am going to find the amusement behind the chronically ill miserable moments. Can't feel my foot? Ho hum! It's only my bottom half. I've still got the majority of me to enjoy life with. Constantly feeling tired? Ho hum! I will catch up on a life's worth of beauty sleep and feel more rested than ever. And if I really need a lift I will just watch some more of Judith and Peter and think...hey....at least I've never gotten bitten by a rabid dog, had my wife asked if I could be put down and saved by a doctor saying it was unethical, then gotten caught carrying a briefcase which unknowingly was filled with cocaine. They strongly could not give a vacation like that more than a three out of five. So who am I to complain with life like this if they could give a life like that such an astonishing amount of optimism?
Most days I live in a limbo of thinking 'it could be worse' and not thinking about it at all. Until I was watching Come Fly With Me (Learn More Here) for about the 18th time. I especially love watching Peter & Judith Surname who are a couple who always have 'the holiday from hell.' Every time I watch I laugh at their antics but a few days ago I really realized something immensely special about their characters. They have the worst luck and yet the greatest sense of optimism. For example, the first time you meet they have had 'the holiday from hell.' They arrive in there cabin on their cruise ship to find it half underwater. Now most people I know would be furious, demand another room, and make us all miserable with their complaints. Peter and Judith's reaction goes (not exact quotes but forgive the memory) We thought ho hum! It's only our bottom halves. (and then decide to enjoy the rest of their vacation). Now that is serious optimism and considering more events which happen, comically delightful. So what does that have to do with me? Well I am tired of the same old, same old and am going to find the amusement behind the chronically ill miserable moments. Can't feel my foot? Ho hum! It's only my bottom half. I've still got the majority of me to enjoy life with. Constantly feeling tired? Ho hum! I will catch up on a life's worth of beauty sleep and feel more rested than ever. And if I really need a lift I will just watch some more of Judith and Peter and think...hey....at least I've never gotten bitten by a rabid dog, had my wife asked if I could be put down and saved by a doctor saying it was unethical, then gotten caught carrying a briefcase which unknowingly was filled with cocaine. They strongly could not give a vacation like that more than a three out of five. So who am I to complain with life like this if they could give a life like that such an astonishing amount of optimism?
Friday, August 16, 2013
Slipped a Roofie by a Moron in a Green Chive Shirt
I am always incredibly careful with my alcoholic beverages. When I order I watch the bar tender make the drink, the drink goes directly into my hands and stays there. One Halloween night I actually took my martini, along with my friend, to the bathroom instead of leave it out. I keep my drink close because a roofie on top of all the rest of the stuff I take to keep me out of a wheelchair and booze would make me seriously ill or in worst case, kill me. And I would rather die in a cooler way than from a moron slipping something into my drink.
On Saturday I went out. After all, I am in my twenties and I do like to get away from the 'she may drop dead at any moment' home atmosphere and let loose on occasion. Alright, first there was two Mai Tais (delicious) and some hibachi. Then my friend mentioned 'hey let's go downtown to the bars there!' I felt fine, hadn't gone all the way into the city for a while and completely agreed. Alas the bar we wanted to go to wasn't very busy so we skipped over it for another one. I can tell you all the details from the bar, even the cute matching 'harley davidson outfit' couple who bought me a shot for my 'as I said 'unbirthday.' This bar, by the way, is famous for birthdays and it was not mine but I still had some free wine. So I felt a little buzzed but otherwise was like, 'meh onward!' The bar we wanted to visit, which I had also visited in Vegas, still looked a bit sad so we went to another one. This is where the story gets weird.
I said 'let's go to the outdoor patio' and promptly sat down while my friend ordered and chatted with a guy in a green shirt which said 'chive on.' Lo and behold he worked in the electron microscope lab at the medical college where half the students in my graduating class applied to or went. I found this fascinating and he showed me some amazing pictures from the electron microscopy. Bear with me. I am nerdy and enjoy this stuff. This is also the first time in my life I did not fully see, nor did my friend, the bar tender make my drink. Although she was a female and I completely doubt would bother to roofie me. My friend handed it to me. I took a sip and told him we should find a table. Then, for the first time, I put my drink on the bar in between the green shirt guy and myself and turned to my friend. When I turned around the guy told me to 'have a great night' and almost leapt off the chair. I thought, 'that's a bit odd but o well.'
This is where time gets strange. I remember saying good-bye and walking into the bar (finally) where I got pulled, cane and all, onto the bar and proceeded to jump into my friend's arms. Then...nothing...absolutely nothing. A black hole exists. Next moment I look up and we are at a bar near the college I graduated from talking to a friend of a friend. It was actually quite scary. I look up and tada! here we are. I decided to visit the bathroom, came back to find my makeup bag oddly on the chair, and then...nothing. Absolutely nothing. Suddenly we are pulling up to my home and I am in my bathroom. All I could think was...I need to throw up, as in I wasn't nauseous but I had this feeling something had to come up because otherwise I was going to be really ill. Then, I realized 'o my cyst bleeding inside me hurts..I think I shall take my prescription oxycodone' (I always always make sure to never mix alcohol & oxycodone so I really was not with it) and go to bed.
The next moment I was literally moaning in pain. The pain was in my head, my body, all over. And the worst was yet to come. I was violently ill. Never ever ever have I had an experience where I threw up, threw up, didn't feel better, couldn't keep down water, and threw up. My family was considering the ER because they were afraid I would get dehydrated. The thought of 'this may have saved my life' never occurred to me and nor did the fact that this was most likely a very very bad sign of something gone wrong. The next few days were like recovering from the worst flu imaginable. When my body finally got sense back into it I started to piece together my Saturday night. I could recall perfectly all of it until that drink and never ever in my life have I been blackout drunk. Plus, it takes a lot of booze for me to get hangover drunk and I wasn't going to be hungover for church the next morning. Actually my friend said I didn't seem drunk and he has seen me have a lot more and be fine.
So I discussed this whole scenario with the boyfriend and younger sister both of who were upset and pointed out the obvious. My boyfriend's sister had the exact same experience and then after effects. I have to admit this was nothing like any hangover I have ever had. Not even when I drank half a pitcher of margaritas after yet another failed fishing trip with my friend. Plus, I know my limits and I haven't gone over them in years. The only explanation I got told was I had been roofied and that explains the blackouts (never had those before), the insides trying to become my outsides, and the fact that I went from tipsy to gone in twenty minutes time.
Why the man did this..I have no idea but I do know I will duct tape my drink to me in the future. Possibly I will get one of those handy dandy hip flasks and have them pour my beverage there like Mad-Eye Moody in Harry Potter. Most of all, I am happy my body threw up it's very odd yellow-colored stuff because a combination of every thing plus booze plus oxycodone (which I would never ever take with alcohol had I been myself) plus whatever drug they added saved my life. I truly believe so because at 93 pounds there really is not much room for combinations like those to not cause significant damage.
So Green Chive guy if you intended to kill the girl with the cane I'm sorry but you are now on Google+ as I am still very much alive. And if you had other plans then you underestimated the power of friendship because no way would my friends do that. Most of all, you owe me a fifty dollar hibachi dinner to make up for the one I violently saw again.
On Saturday I went out. After all, I am in my twenties and I do like to get away from the 'she may drop dead at any moment' home atmosphere and let loose on occasion. Alright, first there was two Mai Tais (delicious) and some hibachi. Then my friend mentioned 'hey let's go downtown to the bars there!' I felt fine, hadn't gone all the way into the city for a while and completely agreed. Alas the bar we wanted to go to wasn't very busy so we skipped over it for another one. I can tell you all the details from the bar, even the cute matching 'harley davidson outfit' couple who bought me a shot for my 'as I said 'unbirthday.' This bar, by the way, is famous for birthdays and it was not mine but I still had some free wine. So I felt a little buzzed but otherwise was like, 'meh onward!' The bar we wanted to visit, which I had also visited in Vegas, still looked a bit sad so we went to another one. This is where the story gets weird.
I said 'let's go to the outdoor patio' and promptly sat down while my friend ordered and chatted with a guy in a green shirt which said 'chive on.' Lo and behold he worked in the electron microscope lab at the medical college where half the students in my graduating class applied to or went. I found this fascinating and he showed me some amazing pictures from the electron microscopy. Bear with me. I am nerdy and enjoy this stuff. This is also the first time in my life I did not fully see, nor did my friend, the bar tender make my drink. Although she was a female and I completely doubt would bother to roofie me. My friend handed it to me. I took a sip and told him we should find a table. Then, for the first time, I put my drink on the bar in between the green shirt guy and myself and turned to my friend. When I turned around the guy told me to 'have a great night' and almost leapt off the chair. I thought, 'that's a bit odd but o well.'
This is where time gets strange. I remember saying good-bye and walking into the bar (finally) where I got pulled, cane and all, onto the bar and proceeded to jump into my friend's arms. Then...nothing...absolutely nothing. A black hole exists. Next moment I look up and we are at a bar near the college I graduated from talking to a friend of a friend. It was actually quite scary. I look up and tada! here we are. I decided to visit the bathroom, came back to find my makeup bag oddly on the chair, and then...nothing. Absolutely nothing. Suddenly we are pulling up to my home and I am in my bathroom. All I could think was...I need to throw up, as in I wasn't nauseous but I had this feeling something had to come up because otherwise I was going to be really ill. Then, I realized 'o my cyst bleeding inside me hurts..I think I shall take my prescription oxycodone' (I always always make sure to never mix alcohol & oxycodone so I really was not with it) and go to bed.
The next moment I was literally moaning in pain. The pain was in my head, my body, all over. And the worst was yet to come. I was violently ill. Never ever ever have I had an experience where I threw up, threw up, didn't feel better, couldn't keep down water, and threw up. My family was considering the ER because they were afraid I would get dehydrated. The thought of 'this may have saved my life' never occurred to me and nor did the fact that this was most likely a very very bad sign of something gone wrong. The next few days were like recovering from the worst flu imaginable. When my body finally got sense back into it I started to piece together my Saturday night. I could recall perfectly all of it until that drink and never ever in my life have I been blackout drunk. Plus, it takes a lot of booze for me to get hangover drunk and I wasn't going to be hungover for church the next morning. Actually my friend said I didn't seem drunk and he has seen me have a lot more and be fine.
So I discussed this whole scenario with the boyfriend and younger sister both of who were upset and pointed out the obvious. My boyfriend's sister had the exact same experience and then after effects. I have to admit this was nothing like any hangover I have ever had. Not even when I drank half a pitcher of margaritas after yet another failed fishing trip with my friend. Plus, I know my limits and I haven't gone over them in years. The only explanation I got told was I had been roofied and that explains the blackouts (never had those before), the insides trying to become my outsides, and the fact that I went from tipsy to gone in twenty minutes time.
Why the man did this..I have no idea but I do know I will duct tape my drink to me in the future. Possibly I will get one of those handy dandy hip flasks and have them pour my beverage there like Mad-Eye Moody in Harry Potter. Most of all, I am happy my body threw up it's very odd yellow-colored stuff because a combination of every thing plus booze plus oxycodone (which I would never ever take with alcohol had I been myself) plus whatever drug they added saved my life. I truly believe so because at 93 pounds there really is not much room for combinations like those to not cause significant damage.
So Green Chive guy if you intended to kill the girl with the cane I'm sorry but you are now on Google+ as I am still very much alive. And if you had other plans then you underestimated the power of friendship because no way would my friends do that. Most of all, you owe me a fifty dollar hibachi dinner to make up for the one I violently saw again.
Monday, August 12, 2013
And if I were a Millionaire...
I was thinking today about what I would if I had millions at my disposal. Fancy cars are irrelevant since I am medically forbidden to drive and shopping only gets you so far. So here is what I would do:
1) Have a travel show even if it's just one episode about traveling chronically ill because at times it's just hilarious. I love life and if you find the humor in life then it is never boring! For instance in Las Vegas I had to use my cane. People would see it and ask if it was a 'kinky toy to keep my man in line.' Now THAT was a new one for me. I preferred using it to reach the elevator. My friend and I were in six inch heels and hell you can't run to fast in those. So I would reach out the cane and stop it from closing. We got asked to party VIP so I broke down my cane into four parts, stashed it into her purse, and held on for the ride. Traveling chronically ill is an experience and not something to be horrified about.
2) Fund Dysautonomia research to find a cure and call the lab: Dysauto-YES-mia because there is now a way to treat it for good. No more no, just join a support group and let life pass us by. Now it would be yes, there is a saving treatment, and yes you can kick this disease's ass. Plus, I would love being able to be in the lab. I love all lab work and I'd be like, 'can I see what you are doing? I'll wash those petri dishes! Please let me do injections and can I examine those immunoflourescent cells?' My dream resides in the lab and I want to return to it.
3) Buy my parents a new car. My parents have paid for us to travel all over the world and given their children more experiences then most will have in a lifetime. Yet they have never used the money to buy a new car. So I would love to do it for them. For my mom it would be one of those super-green hybrid types and my dad, well, whatever he would like to have.
4) Have a travel fund so chronically ill people can finally have a chance to do it. Medications, doctor's visits, and the stress of every day life often means we feel trapped. I am lucky to be able to travel but most cannot say the same. People have foundations for children to travel but they forget about the inner child in us. I want to give people the opportunities I have. Traveling helps give a reason to hope, happy memories to fall back on, and something special to share.
5) Be free. I could pay for help so my family would not be constantly stuck in a cycle of worrying and caring for me. They would know someone was around and not be so scared to let me function on my own.
So there you have it. Of course there is more but as life goes I am very tired and need a nap.
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| My cane and I in Las Vegas! |
1) Have a travel show even if it's just one episode about traveling chronically ill because at times it's just hilarious. I love life and if you find the humor in life then it is never boring! For instance in Las Vegas I had to use my cane. People would see it and ask if it was a 'kinky toy to keep my man in line.' Now THAT was a new one for me. I preferred using it to reach the elevator. My friend and I were in six inch heels and hell you can't run to fast in those. So I would reach out the cane and stop it from closing. We got asked to party VIP so I broke down my cane into four parts, stashed it into her purse, and held on for the ride. Traveling chronically ill is an experience and not something to be horrified about.
2) Fund Dysautonomia research to find a cure and call the lab: Dysauto-YES-mia because there is now a way to treat it for good. No more no, just join a support group and let life pass us by. Now it would be yes, there is a saving treatment, and yes you can kick this disease's ass. Plus, I would love being able to be in the lab. I love all lab work and I'd be like, 'can I see what you are doing? I'll wash those petri dishes! Please let me do injections and can I examine those immunoflourescent cells?' My dream resides in the lab and I want to return to it.
3) Buy my parents a new car. My parents have paid for us to travel all over the world and given their children more experiences then most will have in a lifetime. Yet they have never used the money to buy a new car. So I would love to do it for them. For my mom it would be one of those super-green hybrid types and my dad, well, whatever he would like to have.
4) Have a travel fund so chronically ill people can finally have a chance to do it. Medications, doctor's visits, and the stress of every day life often means we feel trapped. I am lucky to be able to travel but most cannot say the same. People have foundations for children to travel but they forget about the inner child in us. I want to give people the opportunities I have. Traveling helps give a reason to hope, happy memories to fall back on, and something special to share.
5) Be free. I could pay for help so my family would not be constantly stuck in a cycle of worrying and caring for me. They would know someone was around and not be so scared to let me function on my own.
So there you have it. Of course there is more but as life goes I am very tired and need a nap.
Wednesday, August 7, 2013
Dang it man. Have some respect for the lady in a wheelchair!
Today we (the family) decided it would be an excellent idea to check out the well-known fair. Now everyone goes to the fair but I haven't since I got sick and going today reminded me why. It's because damn it! People are just plain rude to wheelchair occupants. No one moves! You say 'excuse me' and 'I'm sorry' and no one moves an inch. After dealing with this crap for an hour I turned to my current driver, little sister, and told her 'just run 'em over. If they are not going to move then they need to learn to respect the wheelchair in a more personal way.' That and I decided to give my best 'evil eye' and dangerously dirty looks.
So there we were: kind of making it through the crowds until we got stuck behind the slowest ladies possible. They weren't even browsing! Just walking deathly slow. We tried to say 'excuse me' (nothing). 'I'm sorry' (not even a glance). Then attempted to sneak around and they immediately ended up in our path. We could not try to run them out of the way. Finally we were both shouting 'excuse me' to them before their friend emerged. She thought we were some vendor guys trying to sell her a hair curler and that's why we were shouting. Even with her crazy rant...we still could not get through. It was ridiculous and downright insane and I was definitely starting to consider jumping my wheelchair and getting a ride on the hoveround rolling past. If you are electronic, people move. Handled by humans? Not a freaking chance.
The story does have one moment which left me highly amused and very cheery. My father had taken over the pushing of the wheelchair and we were trying to follow my brother through the crowds. We were going at the same pace, waiting for other people to pass, and doing the same as those around us. Unfortunately, some idiot lady decided she could just jump through my moving wheelchair. Well, I'm not a person. We do not have the immediate 'someone ran into me' reflex. In a wheelchair you have the 'o no. you did not just run into me! reaction. There was definite clip of the ankle and one severely nasty look which I returned times ten. My father said sorry but she marched up to her friend and not-so-discreetly started hissing in her ear about it. I really, really, really wanted her to say something along the lines of, "I cannot believe you just ran into me!" Then I could loudly point out, "I'm sorry...I'm in a wheelchair. Hasn't anyone ever told you to respect the disabled by not trying to run them over?" After all, she was the one who tried to shove through without a thought to anyone else. In the words of Antoine Dodson, "You are dumb...you are really, really dumb." Although, you really did make my day at the fair. So thank you crazy wheelchair skipping lady.
So there we were: kind of making it through the crowds until we got stuck behind the slowest ladies possible. They weren't even browsing! Just walking deathly slow. We tried to say 'excuse me' (nothing). 'I'm sorry' (not even a glance). Then attempted to sneak around and they immediately ended up in our path. We could not try to run them out of the way. Finally we were both shouting 'excuse me' to them before their friend emerged. She thought we were some vendor guys trying to sell her a hair curler and that's why we were shouting. Even with her crazy rant...we still could not get through. It was ridiculous and downright insane and I was definitely starting to consider jumping my wheelchair and getting a ride on the hoveround rolling past. If you are electronic, people move. Handled by humans? Not a freaking chance.
The story does have one moment which left me highly amused and very cheery. My father had taken over the pushing of the wheelchair and we were trying to follow my brother through the crowds. We were going at the same pace, waiting for other people to pass, and doing the same as those around us. Unfortunately, some idiot lady decided she could just jump through my moving wheelchair. Well, I'm not a person. We do not have the immediate 'someone ran into me' reflex. In a wheelchair you have the 'o no. you did not just run into me! reaction. There was definite clip of the ankle and one severely nasty look which I returned times ten. My father said sorry but she marched up to her friend and not-so-discreetly started hissing in her ear about it. I really, really, really wanted her to say something along the lines of, "I cannot believe you just ran into me!" Then I could loudly point out, "I'm sorry...I'm in a wheelchair. Hasn't anyone ever told you to respect the disabled by not trying to run them over?" After all, she was the one who tried to shove through without a thought to anyone else. In the words of Antoine Dodson, "You are dumb...you are really, really dumb." Although, you really did make my day at the fair. So thank you crazy wheelchair skipping lady.
Tuesday, August 6, 2013
Mystery Diagnosis: A Patient's Vindication (She Ain't Crazy!)
I adore Mystery Diagnosis because 1) diseases are fascinating 2) it's thrilling when people finally get an answer to their problems. The case in point on an episode I saw today was a lady whose symptoms were unable to be diagnosed by simple blood tests or MRI. She lost her husband, years with her children, her job, and almost gave up hope. Frustrated with doctors she decided to embark on her own search for answers. After all, when doctor's think 'it's all in your head' you really have nothing to lose by looking for answers yourself. So she searched the internet and found a condition which sounded exactly like every symptom she was experiencing. The description could have been completely her own.
She contacted a specialist in the area and he was able to clearly diagnose her with Mal de débarquement syndrome. The news was bittersweet. Her condition is rare and there is no cure or truly effective treatment. Still, she solved her medical mystery and vindicated her condition. Like so many of us medical mysteries, we aren't crazy. The doctors just fail to look beyond your simple average tests. This lady's doctor did a posturography for diagnosis. Something none of her other doctor's thought to do. He realized she was truly sick and did something to give her a name to her nightmare.
This lady deserves to be respected for her decision to never give up on an answer. My own medical mystery has pieces solved but the whole question remains unanswered. Watching Mystery Diagnosis was definitely a boost to the health morale today! She didn't give up looking for an answer and neither will the rest of us. Life's to short to wait eternally for a doctor to find one.
Paper Crane Update!-> 22
She contacted a specialist in the area and he was able to clearly diagnose her with Mal de débarquement syndrome. The news was bittersweet. Her condition is rare and there is no cure or truly effective treatment. Still, she solved her medical mystery and vindicated her condition. Like so many of us medical mysteries, we aren't crazy. The doctors just fail to look beyond your simple average tests. This lady's doctor did a posturography for diagnosis. Something none of her other doctor's thought to do. He realized she was truly sick and did something to give her a name to her nightmare.
This lady deserves to be respected for her decision to never give up on an answer. My own medical mystery has pieces solved but the whole question remains unanswered. Watching Mystery Diagnosis was definitely a boost to the health morale today! She didn't give up looking for an answer and neither will the rest of us. Life's to short to wait eternally for a doctor to find one.
Paper Crane Update!-> 22
Making a 1,000 Paper Cranes to Make My Wish Come True
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| One of my first paper cranes. Not very good but hopefully after a couple hundred they will definitely be improved! |
In school I felt most alive when working to accomplish a goal. I worked two jobs, took pre-med classes, and had to plan out each moment of the day to make it all count. Yet I was never happier then at those times. I loved the stress, the thrill of taking on more responsibility, and always, always planning for a successful future. Relying on others has never been my strength. I could drive, run (if I ever wanted to), work for hours & hours forgetting to even eat, and refused to look back. People made suggestions and I listened but the final decision was always my own. Graduate school? I knew where I wanted to go and my parent's arguments to stay close to home could not touch me. This was to be my future and if I wanted to succeed then I needed to go to a place where I could do that in the field I wanted. I have always been that way. Life has never been easy but I never wanted to give up what I believed to be what someone else wanted.
I have accepted my world is longer my own but I try not to make it other's. I do not want my parents, my friends, and my boyfriend to become caretakers who have to give up their lives for me. So I do my best to not hinder their lives and disrupt them with my needs. I am not free but they are not to blame. When people apologize and awkwardly say, "I'm sorry." I answer "Don't be. It's not your fault I'm sick. So unless you did, there is no need to apologize.' Sometimes they laugh, other times they stare, and mostly they look ashamed to have given me such a pointless statement. The absolute best is when people ask "is there anything I can do for you? My answer? "You can give me twenty dollars." I have to laugh at their reaction. Hey! You asked what you could do and I could use the cash! No one has given me the cash but they have gotten the point. It's not your fault, you can't fix me, so there's no need for sorryes or sentimentals.
And now that I have gotten off a tangent (it's the late hours of the night or early early morning here so I'm rather tired) I will return to my point. I wish to be free to drive away, to travel without a wheelchair and escort, to not take medication morning, afternoon, and at night, and to live my goals. My parent's would be watching me succeed from afar and not worrying every day about what my body will be like the next one. I could be the woman my long-time boyfriend thought he would see and let me take care of him for once. No more ER visits, pain, fatigue, bad heart days, and struggling to hope for a better day.
So I am making those paper cranes. 1,000 and dream of a wish coming true. Perhaps the time it takes will mean I find myself healthy once again or maybe I will wake up healthy like I woke up sick. I never believed in fairy tale wishes before and I know many of you do not but I am going to try. You can look at me with pity, scorn, or just disbelief. Or maybe...just maybe...you can hope for me (or pray if you do) my wish will come true.
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| HelpMeHope jewelry is of my personal design to give hope by wearing jewelry showing support for conditions I struggle with on a daily basis. This bracelet's green is for support against Celiac Sprue. If you wish to purchase HelpMeHope jewelry, please visit the store on etsy.com: Help Me Hope on Etsy.com |
For those read this blog, I will always add a number update so you can know I am serious about this. I started today and have a grand total of fifteen cranes. Perhaps some days I will only be able to make one but I will not stop until my 1,000 cranes are there. And if, just if, I will find a way to visit Japan and pay my respects to a little girl with a huge wish who worked so hard to make 1,000 cranes of her own. She has inspired me with her courage. Courage which reached out to others who helped finish the dream when she could no longer could.
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