Coma Girlfriend Returns

My freshmen year of college I had the nickname of 'coma girlfriend.' Looking back I was far to sleepy to understand why anyone would call me that. Even as a little girl I had a sleep problem. My own mother was worried I would not make it through the first grade without being able to have a nap. In high school I would nap during my free time in the library so I would be able to work after school. Then freshmen year of college I went into sleep overdrive.

Me imitating a fountain in the days of Coma Girlfriend

This was literally my life: Get up. Get ready. Class. Nap. Class. Nap. Nap. -Have friend call me to make sure I made it to class- Nap. Lunch. Nap. Nap. Class. Nap. Dinner. -Call boyfriend to come over. Fall asleep while waiting for him to come over. Welcome him in and ask if he would like to also take a nap.- More napping. From about nine p.m. to midnight be completely awake.

After several sleep studies, a resoundingly bad day sleep study where I fell asleep not 3 out of the 5 times nap times but all five and then started dreaming during one, and other stuff I was diagnosed with a sleep disorder (hurrah!). We began treating it and I proudly told him months later, "I can now get up and feel rested. If I want to, I have the energy to actually make waffles in the morning!" If you have never had a sleep disorder then you have no idea how happy something so simple makes you. Then again it might just be me who finds happiness in such simple things.

When I got sick I slowly started falling back into the coma girlfriend mode. First it was the crippling fatigue which has now let me with the label of someone suffering from Chronic Fatigue Syndrome. I feel weary all the time as though my body has been fighting far to long. For a while I had to resort back to long long naps and then the fatigue seemed to abate a bit. I was nowhere near my energetic self but I could make it a day or two a week without a nap.

The latest treatment decision has brought back on the fatigue full force but helped with the shaky hands. I am the returning coma girlfriend. The coma girlfriend would be much cooler if it meant I had superpowers. Superpowers which did not include literally being able to fall asleep anywhere, needing a nap or else, and sleeping for hours only to wake up exhausted. 

I am trying to balance out my life around the fatigue. Every day must be measured by how important activities are. If I am doing something in the evening then I better rest in the morning. Doing something in the morning (like sewing) means not scheduling anything later in the day as I will be doing serious snoozing in the evening. Even thinking about the process is exhausting. I won't give up though.. 

The people who have it really hard are the ones who are closest to me. They get passed over for sleep. I cannot help it. The fatigue hits me and I am out. I have yet to find a way to stop it. So I will continue trying to maneuver it around my life and hope all this beauty rest will leaving me looking fabulous for years to come.

Positive Thought of the Day: "Kagayaku Sora no Shijima Ni Wa" Kalafina's music always makes me feel a bit more alive on easy the most exhausting of days.

7 Things This Chronically ill Week Has Taught Me

1. People can cry all they want about my shaking hands but I remain happy simply because I still have them.

2. I still like to go crazy with seam rippers. My sewing time has taught me not every non-perfect stitch need be ripped out and I should back away from using them excessively.

3. No matter what age you are having a hobby you both love makes a friend out of stranger.

This "tree of life/hope" was made for my niece and not for sale

4. I still cannot attend Japanese chats as my web camera thing needs serious looking at. I can look at it. That does not mean it spontaneously decides to do what I want.

5. I lack the funds for a chronically ill trip to China. So I am learning something new. Perhaps people will appreciate the beauty of the tree of life as much as I do. Hopefully more than my fingers which do not appreciate my wire-working.

6. My dog has no respect for me. I get up. He takes my spot in the bed. I let him out. He disappears for fifteen minutes and proceeds to bark at the wrong door. Basically, he is more of the boss then I am.

7. Love is indescribable.

Positive Thought of the Day: I am attending a banquet today to raise money for the celebration of life. Life is a gift and every one should be given the chance to live.

Chronically ill Decisions are Always a Good Time!

Yesterday I was going to write about my annual 'I'm not dead but still chronically ill' appointment but ended up so tired I accidentally posted only the first sentence. Thank you to whoever 1+d it! The post was actually an accident but I appreciate it all the same.

I have seen a lot of doctors and now know the difference between one out for their own gain and one who actually cares. Mine does care. When I said the shaky hands were 'pretty good today.' He and my father both looked horrified. My hands shake to the point where it is embarrassingly noticeable. Everyone looks at me like I have gone crazy when I say, "really. It's not that bad." I am alive and they are still there. Does no one else see this as a positive?

Anyway, there was good news, no news, and bad news. The good news is whatever was on my initial MRI scan when I first became sick is mostly gone. My first incompetent doctor had thought it was a sinus infection in the ethmoid region. My father is friends with a neurosurgeon so he asked him to look over the scans. "Taking antibiotics is pointless. Those are arachnoid cysts in her brain and not a sinus infection." So over two and a half years later I figured another scan would shed light on whether or not this could play a role in my migraines. There is still a thing in the maxillary sinus region on the right side but the MRI technicians noted it to be 'stable.' I thought this was very good news. Finding out things hanging out in your brain are now gone is always a good feeling.

The no news is simply the problems remain. My walking is better, my fainting is not, the fatigue still sucks, I still have pain, lots of migraines, and I could go on and on. There is progress in one area but then other areas start to compensate for it. Example? The walking like a half-drunk person weaving from side to side is significantly better. The hand shaking is considerably worse, so is the tachycardia at night, and the foot numbness has begun to be more of an issue. I feel my foot but it's like a heavy weight at the end of my leg. I know it is there. Unfortunately the extent is pretty much that. A few weeks ago I was cleaning, something dangerous when you use your room as a workshop, and stepped on something sharp. I did not realize my foot was bleeding until I looked down and was like, "hey ho! There's blood coming out of my foot!" 

My allergies are also driving me crazy. Years and years ago I got shots which worked miracles. I had no problems whatsoever. Starting a few years ago the allergies returned and keep hitting me with a vengeance. Hello allergy medications! Even they have stopped working properly.* We could do special drops (the explanation of these is just to confusing to explain here) but only if I do the testing. This testing always makes me sick. I get hit with literally the million-to-one ratio and my body goes crazy. The last testing bout I was so incredibly sick I started begging the nurse to please, please stop giving me anyone more shots. I have no desire to return to such horrors again.

*I found out from my doctor the shots have a ten-fifteen year range of effectiveness. No one explained that one! So the timing of their return actually corresponds perfectly with when they are no longer effective.

I am going to return to using the microcurrent treatments. I am starting them in two weeks. Last time the result was my foot's feeling returning full force after several treatments. The damn foot then started hurting! I gave up on them choosing to return to the numb painless state. Now I am going to start doing them all over again and just deal with it. Maybe the results will be better this time?

There is more to my visit obviously. Right now I am still processing the details. I need to speak with my long-time boyfriend and make more decisions. Life is never easy when you are chronically ill. Actually life is never easy for anyone so I cannot complain to much. I can say life has been better but it has also been significantly worse. This appointment is only a reminder of this fact. 

Next week I have an appointment with another one of my doctors. I hope the results will be as wonderful as the cardiology ones. After all, positive thinking and humor are the core of my desire to keep fighting another day. I do not plan on giving up so easily :)

Positive thought of the day: My hands may shake but I still have them!

Shaky Hands. Steady Heart.

Today marked a new beginning into learning another creative skill. I wanted to go beyond just typical 'sewing' and expand into more complex maneuvers. My parents, being my parents, know someone for anything and everything (they're like a human iphone). Within a day or two they found someone who I could meet up with and learn from. 

Today was the first day and the beginning of making doll-size dress from a pattern. Things were fine with explaining but problems showed up immediately when it came to cutting out the work. My hands went into shaky mode. They are always a bit shaky. Normally I can get around it. Today they seemed completely against me. The moment I started cutting out the patterns my hands started shaking harder.  She obviously noticed but helped me by holding onto the material while I held the scissors.

Doing careful histology work in Cell Biology before being sick

The process of ten minutes to most people took me over an hour. Part of it came from needing to then mount the pattern and cut it out of the cloth. She had one of those handy dandy razors but I am embarrassed to say I could not use it. I worry about my fingers slipping, they often do, and chopping into them. 

Sitting there, I realized, how far my hands have shaken themselves. I used to be proud of my ability to inject one-two cell zebrafish embryos with a 'cocktail' through a very fine needle. All those years of delicate jewelry work came in handy in our genetics and cell biology labs. 

Now I have days so bad I can barely hold a cup properly. When my dad came to get me (not allowed to drive still) and the wonderful lady mentioned my hands. He said, "her shaky hands make us want to cry." Yet another person who wants to cry all over me! (see blog post on..I'm chronically ill. Not dead!). I asked him on the way home if what he said was true. Both my parents hate the shakiness of my hands. 

I won't lie. The shaky hands annoy me but I would rather they shake then be numb like my right foot. My hands are extremely important to me. Obviously every one finds hands important but for me it is on a different level entirely. I am a creative person. To be able to make jewelry, paint watercolors, do dollhouse work, and sew all requires my hands. They are part of the reason why I have a 'steady' heart. I can hold into my hope by still being able to use my hands to be creative. 

I know my hands shake. I know people want to cry when they seem them. I also know I am so lucky to have been born with hands able to do so many different types of work. Back in the day I was even able to weld and do wood working. I will not cry for what I can not do. Instead I will stay 'steady' in enjoying all I can do in this world. 

Positive Thought of the Day: Let the troubles in your life lead you to appreciate the smallest of life's joys.

7 Things This Chronically ill Week Has Taught Me

1. If you put gut bacteria from thin humans into obese mice they become thin again. Very cool. Slightly awkward to get asked if you are a thin human. "Can I have some of your gut bacteria?"...Sure...why? "Well I'm going to inject it into obese mice and see what happens!" 

Obese to thin. I told you bacteria was amazing!

2. Never merely trust the outside super glue description. If it's way to liquidly you will get super glue on you and then superglue yourself to a paper towel trying to get it off. Thank goodness for keeping lots of nail polish remover around.

3.Having origami skills comes in handy. I get to use them to volunteer for card making help for our local Girl Pioneers. Alright, not until November but I am still excited. Now if they would only let me help on wood cutting for the boys pioneers...

4. Google plus is a great and wonderful place to meet people who also love science and are a thousand times smarter than you. Their hard work makes this world a more interesting, and hopefully, better place.

5. Having an excellent EKG is worth being happy over. Finding out you don't have to return to the cardiologist for another six months is also a feeling worthy of happiness.

6. I don't thank God nearly enough for giving me yet another beautiful day to wake up to.

7. There is such a thing as to much Mystery Diagnosis. It's best to not watch multiple episodes in a single day. Savor them episode by episode.

Positive thought of the day: Fall is upon us. Good-bye summer heat and hello being able to be outside!

Tis the Standard 'Y' Incision

I love Mystery Diagnosis dearly but tonight I am watching the classic medical show which started my love for medical shows, Dr. G Medical Examiner. My family absolutely cannot understand how someone who loves life so much can find the world of autopsies so fascinating. I always say, "do you realize how much of a story a deceased body can tell?" 

 As my friend once said, "everyone lies about those questions the doctor asks you in his office but you can't lie when your dead." Which is why I would prefer going the Mystery Diagnosis route before the Dr. G way.  Mystery Diagnosis has always been the show which is downright fascinating and uplifting. Even when the answer is not good, they still have an answer. As a medical mystery as to what EXACTLY is behind my health problems I would really appreciate an answer.

Pictures of the Standard Y Incision can be disturbing. I thought this might be safer

Now. Back to Dr. G Medical Examiner. I am still very much alive at the moment. However, I was healthy one day and literally bedridden the next. So logically, if you can be healthy one day and sick the next, it is definitely true you can be alive one day and suddenly dead the next. I'm not being depressing. Just realistic. 

I wish I were brave enough to donate my body to science. After reading a book which shared the options of where your donated body might be used I lost interest in the idea. On my driver's license it says I am an organ donor. Hell yes! As long as you put me in the ground afterwards please find some use in my organs. I'm sure there will be some, "eh..this one's not usable..eh...this one looks a little crappy..." but hopefully I have a kidney or cornea which can help make another person's life better.

Ah. Commercial break. Good thing there is such thing as a DVR because honestly one of the best parts of the show is chiming in on, 'first we make the standard y incision.' This would be as far as I could make it as a medical examiner. My sister's good friend is one and told me how once they got in a man who had a metal beam weight 1,000 tons dropped accidentally on him. All of his organs came out his..well...let's just say it was disturbing. I lost my appetite entirely while she went to get seconds.

*This episode is intense. The man was just discovered to have died from necrosis of his intestines from a very rare condition.

Medical examiner will never be my calling but I still find the field fascinating. I am always amazed at the secrets our bodies reveal only after we are dead. Perhaps mine will show something really cool happened inside. Cool, as in 'that's scientifcally fascinating except when it is your own body' way. I would be perfectly happy if they were able to find a successful way to treat this health nonsense. There does not have to be anything 'cool' about it. I am perfectly happy to go the Mystery Diagnosis way and end up with an answer while still living and breathing. 

Thought of the day: Be an organ donor! You will save lives and give someone hope for a better future.

A Chronically ill Job Suggestion Celebration!

My little sister has taken it upon herself to find jobs pertaining vaguely to what I like and suggest them as a career. When I say jobs I don't mean like office worker or lab technician. Nope. The latest job she sent me was for an origami artist. This is how our conversation went:

Me: (Opens text with ad for origami artist needed. Good pay.) ...? Texts: Is this a joke? I don't get it.
Sister: No! It really is legit looking! And you do origami! It's perfect for you.
Me: I'm not an origami artist. I can't come up with new spiffy designs. I just do it for my stupidly shaky hands.
Sister: Do you want me to call for you? I will.
Me: ..... I will think about it...
Long-Time Boyfriend suddenly joins in: Is this ad a joke?

Before the origami artist, it was a job call for manga translators. I pointed out I do translate manga for me but it is a ridiculously long process when you are still new at Japanese. No way could I ever be a translator. Not possible. Still, she refuses to give up and I am almost afraid of what will arrive as a job request next.

Job suggestions from the rest of the family typically go as follows. Someone throws out a suggestion. Other family members realize this obviously would not work and give them dirty looks. Everyone gets into a silent, to evidently avoid upsetting me, war over being insensitive to my feelings. They wait until I am having an exhausting nap before discussing such things. Sometimes I point out I am still awake and not offended. Mostly I leave them to do whatever. On the rare occasion where I am on the verge of going crazy from being so sick all the time I start crying. Then everyone gets upset. 

As for myself, I am always looking for a job which will work with my health situation. I'm realistic and know my limits. The year after I got sick I worked as a medical freelance writer for a website updating it's repertoire of work. This would have been great except I started having more problems with light, computers, and was still recovering from my concussion. Our contracts were only until the site was finished updating but I had to bow out earlier then others. I could not function enough to handle the work, a fact of life which makes me throw myself dirty looks.

So what shall I do with my life? Well. Today can be a chronically ill job suggestion celebration! I am always for suggestions on life. Only now I must keep in mind the realistic truths of my health. I don't want to bring those up at the moment though. So perhaps there will be a suggestion which will surprise me by completely working for me. Who knows?

By the way, after much talking on my sister's part  I did call about the origami artist. The position had been filled but if all worked out he would give me a call. Unfortunately, the job is all in origami animals. Flowers, boxes, inanimate objects are all good but animals are the bane of my origami existence.

A Chronically ill Promise to Return to the Places I Love

One of my doctors told me, "people with problems like yours may never get better, hold a job, or lead a normal independent life. Here's the number of a support group. I suggest you join it." I tried the support group option. I could not take the sadness, talks of how life hurts, and so much focus on being chronically ill. My illness may have my body but it does not have my emotions or mind. I want to live with what I have. Not mourn over all I have lost and the miseries of each day. 

Today I was looking at photos of my trip to Greece. I love Greece, particularly the city of Athens. So I am making a promise to myself to find a way to one day return. Many people would point out, "you don't have a job thereby no money." Yep. I know what you are saying. I am working on the job aspect. Finding a job is not exactly easy when you really have no proper health schedule, sometimes can barely walk, am not allowed to drive, have difficulties with many simple things and listing more would get long-winded and boring. This will not stop me though. I have made a promise to myself and I will find a way to fulfill it. 

That's me admiring the view of the city of Athens

Now to return to the places I love. First of all is Athens but there are so many more. To remind myself (since sometimes I have memory issues) I am going to compile a list of the top 10. Each one is a place where I have been and loved. So today I am promising I will one
day, unless for political reasons, be returning to. 

1. Athens, Greece. I want to eat stuffed grape leaves, visit the Parthenon (again), and walk, or roll in my wheelchair, through the city.

2. Venice, Italy. I love St. Mark's square at night and definitely want to return. My hope would be to one day visit during Carnival. I would love to experience it!

In front of the pyramids!

3. The Pyramids. Enough said


4. Morteratsch Glacier, Switzerland. I have seen many glaciers but never actually walked right up to one. We walked the pathway where the Morteratsch glacier has been receding for years right to its' base where you can peek in to sparkling ice caves and walk by the river formed by a constant stream of melting ice.

5. Heide Park, Germany. When we were little my Oma & Opa would make sure to always take us to Heide Park during our stay in Germany. We still talk about how awesome it was going there back in the day. For old times sake I would love to see it again.

6. Arches National Park. I have been to many different National Park but Arches was always my favorite. If I am healthy I would love to try rock climbing there.

 I couldn't find a decent picture of me in Madrid or Seville so here I am at the Alhambra

7. Seville & Madrid, Spain. My family fell for the Alhambra and city of Grenada but I loved the city of Seville. I would also love to revisit Madrid and see the Prado once again. 
 
8. Hohenschwangau Castle, Bavaria, Germany. Most people forget about Hohenschwangau Castle as it is located so close to Neuschwanstein. I have been to both and loved the Hohenschwangau Castle over Neuschwanstein. Although you really should visit Neuschwanstein as well. The castle is downright amazing.

9. Lucerne Switzerland. This is one of the most beautiful cities I have seen. I love the Chapel Bridge and would like to walk on it again.

The Dead Sea from our hotel/spa room window

10. The Dead Sea, Israel. We only got to spend one night on the shores of the Dead Sea and a few hours early the next morning. I would have liked to be able to experience more of its wonders.


This is my list of top 10 places I am promising to return to because I loved visiting them. Of course there are many many places I would love to go. Those I must save for another day.


Optimistic thought of the day: Look for the humor on google and you shall find it.

Back Pain, Heartburn...Next Comes the Red Jello!

Sometimes I have to laugh at the absurdity of my life. I think I am turning into a grouchy old man body. I woke up today grumbling about how my back freaking hurts, mentally complaining on the ridiculousness of heart burn at twenty-four, and realizing I may be one step away from ordering red Jello for lunch. The whole scenario just made me start laughing. Maybe I am turning a bit senile in my not-so-golden twenties.

Someone posted my old hero, the Monopoly man, & me which made me laugh again while writing this.

Every Christmas I watch 'Christmas Vacation.' There is one scene where the grandfather refuses to wait because 'he has to eat so he can take his back pills.' I realized today I may be turning into him. There are times when I too state I must eat so I can take my pills.* Now I wonder if this means I am one step away from requesting red jello (not green it looks creepy) for lunch like the old men do in movies.


*It's a good thing only my dog is here because I just laughed out loud again. Even he finds me a bit crazy at times. Possibly just boring though since I am actually not in my bed for once.*

If someone had said, "hey. In a few years you will be comparing yourself to an old man." I would have said they had been inhaling to much formalin from entrainment. Young, dedicated, in the best health of my life the whole idea was absurd. Only now would I be admitting they had a good inkling of this ridiculousness. Something which might have been smart to share before I fell off the health wagon.

Since switching to the Surname Positive Thought Philosophy (see post on Surname positive thinking) I am trying to approach such scenarios in a unique light. So Hey ho! I have the body pains of a person at an advanced age. It's just my body. You don't need to be healthy to have a sense of humor! Or to meet your hero, the Monopoly man, while dressed up in a blonde wig and geisha costume!

Now I really do need to eat something and take my pills. I definitely will not be eating them with red jello. Never. No matter how old I get the stuff is just weird. Plus I would need to ask my mother to buy it. Asking her is dangerous. She will go out and buy me ten packs of the stuff at once. I would be eating red jello until it expired or I did.

Positive thought of the day: Look for the silver lining and follow it to find the humor in life.

Is it a Walker or a Stroller? Shopping for Miniatures

Today I went shopping, in miniature, with the still very new niece. For the second trip I found myself marveling at the wonders of how useful her stroller is. Instead of stumbling around with my cane I have a perfectly acceptable walker. 

My little niece being happy

The wonderful part is she does an exquisite job of making how I walk irrelevant. Her happy little smiles cause strangers to stop and coo. No one notices my 'unusual' stroller posture. Plus, strollers these days are like rolling storage closets. They have room for everything and anything you may carry. Being myself I carry the minimum: a little make-up, wallet, handicap parking pass, afternoon pills, 'as needed pills,' sunglasses etc. Not to mention this also happened to be a 'in miniature trip' meaning I had samples of wood flooring, carpet, kitchen tiles, furniture plans and who knows what for my niece's dollhouse.

Unfortunately the simple stroller pleasures does not work on every one. My niece is the classic example. There was a few moments of patient stroller time, then being carried by mother, then stroller, then mother, then stroller, then eating the lanyard at the end of my cane, and finally back to mother again.Meanwhile I stood there, hanging on to the stroller, literally awestruck at the beautiful work done by people.  

Baby room furniture set all done by me for my niece's dollhouse

When my brain returned I had a long moment of hydration (to avoid the fainting) and began the ever-so-important varnish and upholstery discussions. My niece replied with 'buh buh buh, ma ma ma, screechy screech' to my questions. Her mother speaks perfect English so by the time we got back to the front of the tiny shop we had solved the ever-so-important contemplation over varnish and upholstery. Thank goodness too because the shop lady was downright rude. Possibly as rude as the food store employees who watched me faint and stood there doing nothing while soccer mom came to the rescue so my friend could buy a two dollar bottle of water to revive me.

Then again I may have looked slightly like a bum. I did immediately sit down after leaving the store. Literally. I just moved off to the side so people could get in. There were stairs going up. I don't take stairs lightly in an unfamiliar place. There's almost a little routine I go through before going up them. Drink something to keep staying hydrated? Check. Rest for a moment(s) while in a position medically suggested? Check. Make sure no one is around to see you crawl up the stairs? Check. Taken the necessary pills? Check*

*As it was afternoon pill time I also had to take my pills outside the door which probably did not reaffirm her beliefs in me as a non-bum.

If you are interested, I did get up the stairs discreetly, safely, and not at a complete crawl. I used my cane to return to the car so my sister could pack up the stroller. All in all, I found it to be a successful experience. Not just for dollhouse stuff but for making it successfully through a store without a fainting spell or resigning to a wheelchair. The stroller made for a marvelous walker. I fully intend to be the one 'pushing' it any time we might go shopping. Except next time I will have to remember to take my collapsible cane. She may prefer the one which has a lanyard to drool over but I prefer having a medical device which can be discreetly packed away.


Positive Thought for the Day: Inspiration is everywhere. Open your eyes a little wider and you will see it.

7 Things This Chronically ill Week Has Taught Me

1)Having a handicap pass is quite thrilling. Having preferred parking and a handicap pass makes life a breeze for this chronically ill gal.

2) Going to a restaurant with the word Egg in the title is a terrible idea for me. 95% of the menu consisted of egg dishes. I love my little sister but she seems to forget slightly important details, like the fact that any egg dish makes me very very sick.

3) People read my blog and some even seem to enjoy it.

4) No matter how much time passes, I'm still terrified of my former professor/employer. He is a wonderful person. Hence why we fear disappointing him. Not being able to fulfill my graduate school plans has left me with a deep sense of his possible disappointment. Maybe he isn't. Maybe he is. I'm still to afraid to know...

5) Born Concepts shoes are amazing. Wearing an outfit to strictly match my new pair is perfectly fine by me.

6) Waking up to "I went skydiving. I went rocky mountain climbing." makes me want to do both of those. Knowing my body does not feel the same rather pisses me off. The combination creates the energy needed to get out of bed before 7 a.m.

7) No matter how sick I may feel the sight of the Big Dipper always makes me smile. The sight of the constellations and stars, so close I want to reach out and grab one, never fails to stun me with its beauty.

Don't Cry for Me! I'm Chronically ill. Not Dead!

Pirate's day, booze, and a fainting spell led to the inevitable. The open honesty from my friend in the back seat, "every..every time I saw you I would go home and cry! You looked so skinny and frail and sick! It's not fair!" Then, the crocodile tears. The ones which are no ladylike sobs but heartbreaking cries.

No tears here!

 
"I'm not skinny! I'm thin!" My comment was lost amidst the tears. O, I was so very glad I was sitting in the front seat. Sometimes the chronic illness symptoms which make car sickness an uneasy reality really have their positive moments. I looked helplessly at her now fiancé. "It's true. She would come home and cry." The tears continued.


I'm not heartless but when it comes to people crying; I am just completely at a loss. Especially when they are sobbing like they're attending my funeral. For the record, I want a party at my funeral with my favorite lemon drop martinis and people to laugh not cry. "Did I really look that bad? I thought I was looking pretty good for not being in a wheelchair." Once again, the crying continued with mumbles of 'it's not fair. You don't deserve any of this. When you faint I get so worried and...'


When the sobs died down a bit I knew the time to point out a few obvious details had come. "Darling, I'm not dead. I'm still very much alive. You can't get rid me that easily and I really have no intention of losing to this nonsense. Not to mention, I gained back two pounds and some cleavage. See! I'm looking pretty good. Annnddd we didn't have to do this year's Renaissance Faire in a wheelchair!" I thought it best not to mention the two fainting spells. Last year they got me removed to the medical building and forced back into the wheelchair. Positive thinking here!


Most people would reach back and give the person a hug. I only initiate hugging when it comes to my parents or long-time boyfriend. Hugging is just not for me. I did reach back to give her a smile and hold her hand for a moment. Being myself I made some random joke about my being ill. Humor is how I deal with life. The tears dried up. We laughed together. Then headed out to her favorite bar still dressed in pirate get-ups.


I do not like to dwell on the past. When I first woke up from 'this is all a dream' I realized feeling sad would not be the answer. Every day I gave myself fifteen minutes of pity time and moved on. I am not dead although you can assume so if I stop writing. For now I have no plans on dying. I hate losing and losing to this health nonsense will never ever happen.

So do not cry! Be happy for me because I am happy. I see life in so many different ways than I could ever have thought possible. Every day I learn something new. Most importantly, there have been people (thank you to squidoo readers!) who have found my words made a difference. Even the tiniest difference made in a person's life is worth getting up for.

Positive thought of the day: It's far to early for one. So I will just say a very positive thank you to +Wasim Muklashy and +shonie Hutter for reposting my 'Perks of Being a To Young Patient at the Cardiologist.' Your enthusiasm for life keeps me motivated to keep on blogging and living mine.




Midnight Waffles on a Thursday (Just Because)

Tonight I am celebrating Thursday night with my favorite-any-time-of-the-day food, Gluten-Free Waffles. I picked Thursday as a day to celebrate because honestly, it deserves a bit of recognition. All my life I never considered Thursday except as the 'thank goodness tomorrow is Friday!' day.

Every other day seems to have it's own personality. Monday: the day so many people dread because it means going back to work. Tuesday: the last day of celebration before Ash Wednesday (for those of Christian religion) or the day which assures you Monday is now over. Wednesday: the day which sends positive thoughts through us-almost to Friday!

Friday needs no explanation. Alright, I'm sure some people may need one but I'm not the right person to ask. Saturdays, ah, the day where we are going to get everything done but really would prefer to just rest and get nothing done. Then comes Sunday, hmmm...it all depends upon who you are and where you come from for Sunday's meaning.

The point is, Thursday has its' one huge claim to fame as Thanksgiving Day then it gets forgotten. I feel sympathetic for the day. Being forgotten is hard. My brother still complains about the time my parent's forgot him at a gas station. In their defense he had decided to wake up after solidly napping and wander into the gas station completely missing everyone else. After about 15 minutes my parent's realized the bunch of blankets was not their son peacefully sleeping and immediately turned around to pick him up.

So today, if it is Thursday where you are, just celebrate the fact that it is Thursday. Not the day before Friday. Just Thursday. Simply a day to remember and appreciate being alive for. Also, appreciate you have not been left at a gas station in the boonies in the days before people carried cell phones. 'Haha' I actually am laughing! My brother, my role model, and hero always complains at the mention of the incident. Being the delightful little sister I have to laugh at his expression when he does.

Onii-chan, if you are reading this: I love you and am laughing with you. Well, no I'm actually laughing at you. I know you understand what I am saying nii-chan. Liebe, Imouto

Positive Thought of the Day: The angry moments of the past can become the funniest moments we will remember in the future!

Dear 'Brainless' Your Ignorance Made Me Laugh and Inspired this Post. Enjoy!

I'm five feet, less than a 100 pounds, and downright terrifying. The terrifying part I found out when people realized I'm not. I just, as one young man said, "She doesn't take anybody's s***." In my defense he showed utter disrespect to our college cadaver which I could absolutely not just sit there and listen to. He ended up apologizing profusely and never mentioned any form of disrespect about the cadaver again. My professor confided later to my mother (she's faculty) he found my vocal passion, argument, and actions very impressive.

Mostly though I am simply myself. My parents raised me with good manners, excellent posture, and to stand by my decisions. Ladylike in public I do not use poor grammar, show anger, remain gracious to those around me, and present myself as worthy of my family. We live under constant scrutiny. So I do my best to live up to standards. 

Today I'm enjoying a migraine free relaxing day. Until I came across a comment which crosses lines farther than disrespecting cadavers. I had commented on the picture a day or two ago. Something along the lines of 'that's so true. Thank you for posting etc.' Unfortunately for the commenter I was on googleplus mobile so I saw his post. I was going to summarize it but decided he deserves his due:

The posted quote which started it all..

Hey, stupid. Was it you that already put this up before? And I asked how you thought quadriplegics would comply. And many others who suffer crippling injuries and illnesses.You are brainless and serve the same purpose as osmosis. Processing shit.

No language could possibly describe the idiot you are. You do not, I repeat, do NOT speak of what you know nothing about. 99% of the time I let comments of ignorance slide because you guys are really trying to be empathetic. For that, I thank you (see blog on Surname Positive Thinking for clarity).

You baka, are not being empathetic. You are 'defending' those who would be disgusted with such ignorance. I live with a chronic illness every second of every day. At my worst I needed help getting dressed, getting to the bathroom, I showered sitting or laying down (we didn't have a medical shower chair), and occupational therapy refused to let me leave the hospital because I couldn't put my socks on alone. How did I comply? Well, actually I laughed at getting denied hospital discharge because of my socks. I had a brief moment of, 'maybe I could just give up on socks' which was killed immediately by the obvious point it's winter. 

Unless they are family, the long-time boyfriend, or very close friends I do not let people visit me in the hospital. Why? It's because I like to take pride when I get up, dress up, and hear people tell me, "You look really good today." When I was able to leave the house I would correlate how bad I was feeling with how well I was dressed. The nicer dressed I was, the worse I was physically feeling. In my own way this was saying, "screw you chronic illness! No matter what you do, I am still looking good. So stick that in your pipe and smoke it!"

Dear, "brainless" how dare you defend us you Sarcoptes scabiei. Do you know what it is like to be a prisoner in your own body? To be perfectly healthy one day and unable to do a thing by yourself the next? I would not wish this on my worst enemy but I would hope, even for a moment, you could understand what words of encouragement do for us. Before getting sick I never would have considered saying the vulgar comments you have. Swearing and calling people 'stupid' is downright stupid itself. At least try to improve your vocabulary by choosing a better synonym.

Alright, the final point: Who taught you biology? They are seriously lacking if your definition of osmosis is: Processing shit. I actually laughed at you there. Honestly, who finds it cool to maim scientific definitions? You do realize there are people on here who lead research in just about any biology field imaginable, publish brilliant scientific papers regarding osmosis, and are university biology professors themselves? Look up the proper definition and apologize for degrading the fascinating process of osmosis.

Wow. My heart is going crazy but it has been worth it. To the person who posted such a quote, thank you. I really appreciated you doing so. To those reading this, thank you for putting up with this long-winded post and being amazing people. To 'brainless': I will never mention your name. It would be petty to do so. If you are reading this, I advise you apologize to the poster and delete your comment. You can also get angry with me. I doubt it would be worth it. The very act of living takes to much energy to care about personal insults. If it had been me you insulted on the post then this blog entry would never have happened. 

Optimistic thought of the day: One person's crude ignorance is another person's inspiration!

The Perks of Being The 'To Young' Cardiology Patient

Today was supposed to be an annual visit to the cardiologist. Unfortunately I realized yesterday nobody else knew except myself and being unable to drive I helpfully rescheduled. After hanging up I had to smile because being a too-young cardiology patient is one of the strangest and yet funniest of all my crazy doctor experiences. 

Sometimes I just want to start smirking in the office at all the people three times my age and more who are giving me a suspicious once over. In the beginning I used to pretend I was waiting for someone, now I'm just like, 'yep. It's me! I'm here again!' And who wouldn't when they have a wonderful cardiologist? Literally, the man scrubbed out of a procedure to be with me in critical care after I went into non-epileptic seizures after our TEE procedure. Bloody hell the man is amazing. I'm digressing. Here are some of the perks of being 'to young' at the cardiologist office.

1) You get to experience the most comfortable waiting room of your life. I never knew there were waiting rooms where every chair is like a comfy armchair, there's even a couch, and those chairs so soft you may never escape once entering. Every part of the room is geared towards comfort. It's amazing! I keep wondering where all this is when I'm in the neurology, allergist, internal medicine, etc waiting rooms.

It's not a UFO...it's a PFO!

2) People beam at you for knowing about how the heart works. They kept asking me questions about the heart's layout, blood vessels to and from, and its' different nodes. I thought everyone was going to hug me! "Normally we spend at least twenty minutes explaining precisely how the heart works to a patient before we can start working on a treatment," they told me. And when I said I knew about PFOs (that was the original reason I saw the cardiologist) I thought they were going to throw me a party. Honestly, if I had known people would be made so happy by my pre-med knowledge of the heart I might have taken more anatomy classes.

3) The bathrooms. I know most people would wonder why this is such a perk but let me tell you, I have been in many different medical waiting rooms and can sum up the bathrooms in a few words: cold decor, bland, boring. Not so with the cardiology bathroom. The first time I went in I thought I was in someone's home. There was nice flowered wallpaper along the walls, cheery colors, actual soap, a nicely laid out sink, and some always handicap friendly bars to help you. Not to mention, a very nice shower. I was highly impressed.

4) All the nurses know you. Since there are almost no other patients my age even the nurses I have never personally interacted with know me. I know this because once I did meet them they already told me they knew who I was since I'm a bit of an unusual patient. Having them know who I am makes life much much easier. They always tell me 'I remember you' which is a great feeling when you are used to explaining your health difficulties over and over to a new set of nurses.

Most importantly...

5) You appreciate your heart more than most people your age ever could. I never thought I would be someone who could be saying that. Cardiology was never my favorite topic and hardly seemed important to a 21 year old in great health. Now I appreciate every beat no matter how painfully fast it might be. Sometimes I complain a bit more about it but I am still grateful. I also am grateful the problems seem to be stable. My hope is naturally they go away but if it's not likely then I will just be happy to enjoy the perks of being a 'too-young' cardiology patient.

Optimistic thought of the day: The past two days horrible migraine only makes me appreciate the migraine free days all the more.

I'm Not Who I Dream

Today has been a very physically painful day. The best remedy I've found is to take enough painkillers to help and then try to slip off into sleep. If I'm lucky it happens quickly, not so lucky it takes a while, and vastly unlucky I end up going to the ER for pain relief. Today was the luckiest I have been in a long time. I fell asleep almost immediately and for the first time in a very long time, I dreamed. Not the dreams where you wake up and realize 'eh...I think I dreamed' but the vivid ones which stay with you.

When I was little I had vivid dreams, mostly nightmares, almost every night and even when napping. Most of them I died in, the majority were sad, and some were downright terrifying. Not until I was in my mid-teens did the vivid dreams disappear. I have never missed them and neither do I analyze the events in them (no matter how much this disappointed my former coworker/professional psychic).

Reality turned Upside Down

My dream today reminded me of a question asked about my dreams, "are you 'healthy' in your dreams?" I have never actually thought about it. If dreams are some desire of our self-conscious then shouldn't I be? Since becoming ill I have never woken with a memory regarding my physical state in a dream. I know I've dreamed, vaguely remember the dream topic, but there was no RED ALERT : Your Body is 100% A-Okay Healthy! This afternoon was the first time I have woken up with a vivid memory of my physical state...and it..confused me.

The dream scenario was not unfamiliar, the people I did not know, and neither did I know where the place was. I did, however, know I was happy. Vivid conversation snatches remain where I am not only smiling but laughing. Something very much like the non-dream me. Only in this dream I remember completely the feel of my wheelchair, of sitting in it with my feet on the rests and the smooth metal under my fingertips. There was a feeling of normalcy to the whole situation. As if no other life existed where I worked out stress on the university elliptical, once took figure skating lessons, and did high ropes courses blindfolded with shoelaces tied together. This me was entirely at peace with how life was, is, and would forever be. There was someone behind me pushing my chair, something which I will never be happy having to rely on in reality, but I was just thrilled to be talking to them as they pushed me where I was to go.

I never got to see the entire dream. After three hours of me solidly sound

asleep my father woke me up. And I quote, "to make sure you were still with us." Good to know they don't fear me dying in my sleep at all.

I don't pretend to understand my subconscious. Honestly, I think it's better if I don't start digging into it for answers. However, if it were a physical form I might have punched it by  now. What the heck's up with dreaming in my wheelchair? Aren't dreams supposed to be an escape? What kind of subconscious crap is this happy-happy wheelchair time? What happened to all those fantastical dreams of yesteryear?

For reasons unknown this dream bothers me more than all the death dreams combined. I think because the person in the dream seemed to have forgotten the life prior to being chronically ill and the hope of a healthy future. There's no way whatsoever I am ever ever going to lock myself in a happy bubble forgetting the inconveniences of this life. Our past experiences (no matter what they may be) and our hopes for the future make us who we are at the present. I am not going to stop believing there is a future for me regardless of my health status. 

 As for the other non-Freudian dream theories: I rather like the idea of the subconscious being responsible for this one. It's harder to be frustrated with strengthening semantic memories or analyzing sensory information via dreams.

Positive Thought of the Day: Today's dreaming disappointments only make me all the more passionate for a happier tomorrow.

7 Things This Chronically ill Week Has Taught Me

1) No matter how hard you focus/try super glue will never work well with shaky fingers. The superglue tends to go on you, the item, the stuff around the item, and never where you want it. Best course of action? Get someone else to do it.

2) Applying for benefits online is not the smartest idea. You will just be getting fifteen pages of paperwork in the mail a week later. In the future, go to the office. The trees will thank you.

3) Don't bother asking family members to remove the dreaded goldenrod from around the house. When my mother said there was 'to much' I didn't believe it. Driving out to dinner on Friday I finally got what she meant. The whole forest area two houses down consists of 90% Goldenrod.

4) Tree grubs make excellent bait. I still would never consider touching one but if a friend puts it on my hook then why not. The best part is you can catch about 7 to 8 fish before needing to put something else on the hook. Highly impressive for fishing.

5) The CDC really does have Level 4 Virologists who are hunting down the MERS virus. I am completely in awe of their amazing work and entirely jealous.

6) You cannot get everything you want real estatewise in Croatia for 275,000 USD. I wasn't suprised in the slightest at this revelation. However, I still remain amazed at the rude woman on House Hunters who thought she actually could. Having traveled & lived for weeks at a time in Europe I have spent time in European houses in the city, suburbs, and 'where the heck are we?' If you move there expecting to find everything as it is in America you are in for a heart attack of culture shock.  
7) Scabies is actually a parasitic infection which can be detected by a biopsy, definitely does not look like a typical skin rash, and downright freaks me out. To the doctor who thought one of my siblings had it, do you read medical journals? If so, please take a look at the pictures and correlate them with the symptoms instead of handing out medications left and right. Or you could have googled it considering you had never seen a case and your hand is permanently stuck at all times to your mini laptop. On that note, their new doctor believes in eye contact, patient-doctor communication, and not jumping for a zebra diagnosis. In the end, my sibling is fine and I'm very pleased they had the courage to make the best choice for their health. *

*If you think I am ranting well yes, I am a bit. I have had more bad doctors then should exist in this world but part of their treatment stemmed from how we treat them. Being pre-med you never hit a book which says...and now onto the the I have no idea what they have so this is what I should say chapter. And patients, how many of us actually tell a doctor we are uneasy or not completely sold on the diagnosis or treatment? In my family it was: the doctor says therefore it must be so. I have an excellent doctor now and part of that is because we communicate, as in, he listens when I speak and I do the same with him. My sibling's doctor was my pediatrician and would type in my symptom, a medication I was on (I had health problems before THE health crash), and go: Aha! Look! It says here -% have this side effect. 

I could go on and on but needless to say, the more I look back the more I realize I should have said: Can I have my money back? Because I know my medications inside out and I could have told you it was a potential side effect. The point is: that is not the answer and not when you've been on this crap for five years. So look me in the eye and start thinking or tell me you don't know and send me to someone who can help.


Positive Thought of the Day: It's a good thing I hoarded everyone's gifts of Memo pads, note pads, and post-its for years. Accidentally discovering them in a moving box (2 and a half years later) when I thought we were permanently out was downright thrilling.

Have YOU Smiled Today?

Who wouldn't smile about a new Jr. Ranger badge?

The best compliments I ever receive are those which tell me I have a nice smile. As far as smiles go I know mine is rather average and truly not anything to write home about. The point is not whether or not my smile is good-looking but the fact that a person has noticed it. To me it means they see the optimism I feel in life. They are not looking at the pathetic excuse my body often becomes. Instead they see the smile which makes me who I am.

Was I always so smiley? Hell no. I had better things in life to do then go around smiling. My face wasn't locked in a scary grim expression but I definitely did not smile just for the sake of facing down another day. Now I smile all the time. I do it when I'm in pain which is often and even when I am feeling particularly down about my health. The reason is simple: a smile makes the world a brighter place. In the hospital or ER the nurses and even doctors will smile back at me. They face so much every day and deserve a smile more than anyone I know. When my cardiologists seems me he is always happy to see I'm smiling. "Keep on smiling" is what he says. So I do. 

There are days where the treatments I face hurt terribly, my senses are off so I cannot walk or see properly, and my hands shake so badly I cannot do even the simplest tasks successfully. Those are days where I smile the most for those I love.They need to know I am not giving up. Just as much as I need their smile to assure me they feel the same about me. 

Mostly though, I smile because I am happy to merely be here. Even on days where I need a walker and have to rely on my family for the simplest tasks I cannot help but smile. There are people who sneer at the idea of being happy over such a stupid thing. Is it really so stupid? As long as you are alive there is a reason to smile. If not for you, then for those around you. Smiles are infectious. I won't compare it to many of the disease I so love to learn about. Even if learning something new each day does make me smile like a moron. 

So have you smiled today? Not a grimacing sarcastic smile but a true one? The type which makes all of us look a little more beautiful.Maybe you have, Maybe you are appalled at the very idea. No matter if anyone sees it or not. Give it a try. You never know where a smile will take you.

Optimistic thought of the day: The horrible storms passed through and the sun is shining like crazy. How can I not be smiling?

Memorable Moments I Owe Entirely to Having to Use A Cane

I get a lot of reactions to my use of a cane. Some are funny, others are a little hurtful, but most have people trying to avoid asking about it but staring all the same. Today I woke up with numbness in my left foot which now matches my right foot in feeling. Hey ho! They're even now! (see my blog post on Surname Optimism if you are confused). 

Clearly my feet are on my mind even if my nerves aren't agreeing. Thinking about my 'missing' foot sensations randomly led to thinking about my cane(s). I suppose most people would get depressed and think about the sad times but I like to think about the 'completely took me by surprise what are you thinking' times. Since they are on my mind I thought I would recall a few memorable moments:

Slaying the dragon with my cane. Ah. If only it doubled as a sword

Moments on Questions of Self Protection. I have had more than one person ask if there is something cool about my cane and if I carry it as some type of self protection. I would love to say flames should out of the handle or pepper spray is activated by the adjustment button but sadly, it is just a cane. If I had to I could use it for self-defense...eh...then I would fall over so maybe not..

That guy from Tru Blood signs my cane

A Momentary place for autographs. My friend is a huge fan of Tru Blood and I jokingly said we should go to his meet and greet next weekend. She took it seriously, very seriously. Since she did not want to go alone and has been picking me up for years now with no complaints. I felt I owed it to her. She did get me Starbucks since we had to arrive four hours early. My other friend was spending the weekend with me so she got dragged along too and so did my wheelchair. The security people were having a massive discussion about how to get me up there. "I can walk with my cane.." They completely ignored me and kept discussing if they should life the wheelchair onto the platform or have him walk down to me (the latter happened). When he came down I realized I was missing an important detail. I had refused the picture for signing because I wasn't going to get an autograph. Everyone was waiting so I just handed him my cane like I wanted it to be signed all along. My friend was pretty much glowing. I hated to mention it had washed off a week later. 


A Moment Conversation Starter. A friend and I were out at a large roof top bar enjoying a drink or two. This young man sauntered up to us and said, "I noticed you have a cane. I just had to meet you and find out the story behind it!" I thought this was actually very creative of him and the three of us ended up talking for quite a while.

All senior citizens loved my cane in the ER. The folding is quite impressive

The Old Lady Who Dissed My Cane Moment. I was waiting at the medical building entrance after a visit to my cardiologist. Instead of standing, I opted to do the intelligent thing and sit on the bench outside the orthopedic area. This very, very old lady came out with a cane and I told her I liked hers. She literally looked my cane and me up and then down again. "My cane is better" she said in this wheezy voice and walked away. I was simply floored. WHO DOES THAT? I was thinking about this moment for hours before I realized: I am upset over an old lady's feelings on my cane. Now that's pathetic. Although the petty part of me will always mentally say my cane was better anyway. It folds up into four places for easy handling, matched my outfit, and has survived more than any cane should. Hers was puke orange, completely clashed with her clothes, and had the horrid four prong bottom.

Our first day of shopping in Vegas

Las Vegas. Multiple moments of The 'Sexy' Cane idea. I had numerous men who commented on my cane by asking if I 'used it to keep my man in line' or 'that's sexy. I like a woman with a naughty streak' or other very strange pervert ideas. We had to keep reassuring them, "My cane is for holding me up, using for walking, and stopping the elevator doors before they close." Thankfully those comments only happened in Vegas. The rest of the world seems to understand there ain't nothin' kinky about being chronically ill and needing a cane.


Optimistic thought of the day: If I weren't having numbness in my feet I wouldn't have started think of my cane and would never written this blog entry. So it all worked out in the end :)