Chronically ill and Yet to Experience Black Friday

I have always wanted to experience Black Friday. Not because I hold a particular desire for any special items. For once I just want to be one of those 'slightly insane' people who waits outside a store for hours and then runs around frantically trying to outwit everyone for my 'goal.'

Most people would be amazed at my lack of experience. To understand you should know a little something about my family. They are not the type of people who see the point in braving the crazed crowds just for a bargain. Instead they prefer to relax. When we still owned a lake house (now we live on a lake) the whole family would spend Thanksgiving Day there. In the middle of nowhere. Just about as far from the crazy shopping scene as you could possibly get.

I apologize. I am not being entirely truthful about our shopping on Black Friday. We did go shopping for something: a Christmas tree. Yes. My parents are the type who insist on going to an actual tree farm to hunt through a forest of trees for the perfect one. After freezing for at least an hour they then come to an agreement which leads to someone having to saw down the blasted thing. I always volunteer. No one has ever let me anywhere near the base of a tree with a saw. And this was before I became chronically ill. Now I just refuse to go. No one ever decides on my choice of tree. So in the interest of myself I stay home in the warmth.

At least I can always enjoy the breakfast before hand. It's probably the only time all year my mother makes bacon and I do love bacon! I love it even more than the idea of experiencing Black Friday. Although that does not change my desire to go. I still plan on it. One day I will. As I say, once I have experienced it I can die happy. People roll their eyes at that. I guess I have an odd agenda on certain things.

Once I get healthy plan on seeing me freezing in a line somewhere on Black Friday. I doubt I will have a particular item in mind but the experience is the most important part. What good is life without truly experiencing it? And if Black Friday is the experience I am craving then bloody hell, I will be out there!

10 Things This Chronically ill Girl is Thankful For This Thanksgiving

1. First and foremost is having God in my life. No matter how painful a day may be He is always at my side. Without God I would have given up all the hope I hold a long time ago. Thank you always.

Stepping off into the sunset this summer

2. Family. They have never given up on me. Even when taking care of me meant literally holding me up. I am especially thankful to my little sister who always took time to take me to my classes and checked up on me without a single complaint. Also, to my older brother. He has never treated me any different. His zest for my life and knowledge keeps me hungry to learn more about this world. Last but never least is my long-time boyfriend. He held me in the ICU, put up marvelously with my sailing enthusiasms, and loves me no matter how horrible I may look.

Whether it be margaritas or hospital stays, they are always there for me

3. Friends. Most of them live halfway across the country. Despite the distance they are always ready to be there when I need them. Even when it means getting texts about a bad day at 2 in the morning.

4. My hands. God has always blessed me with creative hands. I do not need to be able to run when I can reach hope through their work.

Cole in his favorite Winter 'Apparel'

5. My dog Cole. Yes. He drives me insane occasionally with his habits but I cannot imagine a day without his presence.

6. This world's never-ending beauty. When I see beautiful photos, like those of +Margaret Tompkins and +Wasim Muklashy , I am forever reminded of how lucky I am to be here. Sometimes just seeing pictures of fall's glorious colors is enough to raise my spirits on the worst of days.

Literally carrying me inside the pyramid entryway

7. Travel. I am so lucky to have grown up in a family which loves to travel. My parents have taken me more places then most experience in a life time. No matter my physical condition they were there to take me by wheelchair. When wheelchair was impossible my brother would carry me. Even if it meant having to carry me through sand so I could experience one of the oldest pyramids in Egypt.

8. Being able to write and loving to do it. My teachers always complimented me on my writing skills. I never gave any of it a second thought. Now I am so glad I know how to write and try to always give it my all. Perhaps it is not the best but I still love doing it.

My latest manga-inspired painting

9. Oddly enough, anime. I credit anime to my attempted skills in watercolor. Without the style of anime & manga I would never have recognized my passion for painting. I also have to be thankful for those who love anime as well. Thanks to it I have met a lot of amazing people, like +Grym Thor, who enjoys Gintama more than anyone I have ever met.

10. Google+. Thanks to google+ I have gotten to meet a whole new world of interesting people. From those passionate about biology to those who love traveling as much as me I have a lot to be thankful for. Of course my thanks also includes all of my readers. Your thoughts & well wishes go a long way to giving me hope for healthier days! (O gosh. I'm sorry about the rhyme there.)

Take Life's Hint. It's Time to Become Ambidextrous

Today I had another spine-ilicious experience which did not solve the 'lack of sensation on the right side of the body (most importantly my right hand).' So I said to myself (abbreviated it for my mother) hey ho! It's time to move beyond this new hobby stuff and become ambidextrous!

Truthfully my plan extends beyond becoming ambidextrous. Once I realized I was already starting to take over right hand tasks with my left, I figured o what the heck...why not just learn to do everything the left-handed way? I'm already using my left hand for steadying my cane instead of the right and all my gestures are now left-sided. So you see, I am getting there without even having to work at it. Talk about lucky! I don't even have to think about learning how to do things left-handed. My body is already way ahead of me. 

As for the shaking...well it reappeared today for several hours and wrecked several nice sheets of my origami paper. It's always an odd experience combining the numbness with shaking. Although it does leave me with a legitimate (I  believe so) reason to make some diabetic frosting and eat it with the almonds I peeled at 1 am last night. If you are wondering about why I was peeling almonds at 1 a.m, it is a very important story. Which actually translates to: I was feeling a lot of pain, couldn't sleep, wanted some almonds but did NOT want plain almonds. Hence why I spent over an hour doing all the work before eating 2 almonds and going to bed. Rather anticlimatic but it has been a very long day. Better hope for tomorrow as always!

Hey Ho! Chronic illness Causing You to Lose a Hobby? It's a Sign to Get a New One!

I have noticed people get very very attached to their specific  hobbies. Some people can not imagine being unable to do them. They like to put in the 'I would simply die if I could not...' To all of you: It's unlikely you will die from losing your hobby. Besides, in accordance with the Surname Positive Thinking, this is actually a sign for you to expand your creativity. 

When my hands shook to much to continue with my hobbies I had a moment of 'I cannot live without doing what I love.' Then, Hey Ho! I said. This must be God's way of saying it's about time I expand my creative horizons and learn something new. Instead of being sad and crying over the loss I am going to be happy about being able to put the left side of my brain to a new use! Time to clean out the insanity known as my box of craft supplies and get on with it!


*Also, the amount of money I have in supplies for my hobby is staggering so giving it up was mind-boggling. When you cannot work there ain't no time to be buying stuff for a new hobby!


Cleaning out the box of craft supplies was an...interesting experience. My healthy self must have once had a desire to do embroidery. By embroidery I mean, went to a thrift store and bought decades old embroidery kits at fifty cents a pop. I would say a few are definitely older than myself. Most people would be discouraged but I decided 'hey ho! I can't feel my right side. Time to take up a hobby with a high potential of causing myself accidental pain I will not be able to feel.'

After several weeks of this I am slowly realizing embroidery will not be a lifelong hobby for this chronically ill gal. Although I am glad I got to test it out. Now I can finally do something with all those embroidery kits* without feeling guilty. 

*I am definitely not going to be using them completely for embroidery. There is some good stuff in those kits which is worth reusing. Also, no one in my family would really care to add an embroidered tree to the wall. Their decor would just clash with the style so using the pieces is a better idea.

 To my readers I really hope you will not give up on life if you can no longer do your hobby. Sometimes life is just telling you to try it out in a different direction. Is it fair? Nope but neither is letting yourself fall into self-pity. Your mind and body deserve more. So clean out your 'junk' and find something new to try.

7 Things Learned This Chronically ill Week

1. The 25th of November is the International Day for the elimination of violence against women. Learn more from Google's special link: http://www.unwomen.org/en/news/in-focus/end-violence-against-women and stand up for what is right. If you cannot do it for yourself then do it for those of us who have faced violence, in one form or another. It's an experience you never ever forget. No one should have to deal with the repercussions. So let's eliminate violence against women for good. With worldwide support anything is possible.

2. Quotes from others can inspire you but at the end of the day, they are simply another person's words. Your own actions are what actually matters.

I know it is 2013 but the thought is the same no matter the year.

3. One of my favorite of all musing tales: "Once a boy saw a dream. Twirling, twirling, flying, flying. So happy in his freedom. The boy believed himself to be a butterfly. But when he opened his eyes, he was no butterfly, only a mere human. Then he thought to himself: did I just dream I was a butterfly or is this a dream as well? Maybe I am but a dream that is dreamed by the butterfly." ~Haruka

4. Whenever a song gets stuck in my head I have a hard time not singing the words out loud. Evidently this gets ten times more annoying when I sing only lyrics in Japanese. Ah but Kalafina's 'Kagayaku Sora no Shijima Ni Wa' is just to enticing not to end up singing!


5. I love making origami. I also love making cards with ten-second poetry, touching (or humorous) medical sayings, and just find the humor in doing so. My family usually puts up well with my odd ideas but balked at using my latest origami love, angelfish, in a Christmas card. Evidently 'We Fish You a Merry Christmas' is not an acceptable way to share the holiday joy, even if you do happen to love the sport.

6. I am a positive person! No matter what the new medical personnel may assume. Look. I have a highly realistic view of new treatments. Not feeling the right side of my body is a debatable improvement over the shaking, not to mention the new improved tingling in all of my appendages does not inspire eh...instant confidence?!

7. I don't know where to visit this week without repeating a place I have gone. I miss the beauty of Athens, the shores of the Dead Sea, staying blocks from the Colosseum, and eating tapas in places only the locals visit in Granada.

Hey ho! At Least My Chronic illness Makes the Elderly Feel Like Spring Chickens!

Some days you need to switch the Surname Positive Thinking method to looking at your relationship with others. Like Hey ho! My chronic illness makes the elderly feel like spring chickens! Now if you think I am just making this up, let me assure you, I discovered this through a very unique 'field trip' of sorts with our church's senior citizen group.

Me using my cane as a photo prop.

Before you start wondering why on earth a twenty-something would be on a senior citizen trip, allow me to explain. There were three reasons:
      #1. They were taking a tour of the local Hindu temple. I always wanted to take a tour of the Hindu temple but would have felt awkward doing it alone. Hence, accompanying them.
      #2. I was raised around people much older than me so I feel totally comfortable spending the day with people in their 70s and 80s.
      #3. Senior citizens make lunch a priority. As a chronically ill person who is a walking pharmacy, lunch is a priority of my own. 

Our senior group ranges from 'I'm more active at 80 then you were in your twenties' to walkers to wheelchair friendly and canes are a common sight. Most of the members have known me since I was in the single digits. They have watched me grow up and my health progressively go down. I am always pleased about this as it definitely saves me from long explanations over my health.* Part of the reason the explanations are unnecessary is because they know my father who keeps them updated. I always say my father is like an iphone. He has an app for anything and everything concerning people. Need real estate help? He knows someone. Looking for a job in a medical lab? He knows someone. Etc. Etc.

*Most of them like to inform me they keep praying for me. Some people say, 'I pray for you' and others then point out 'well I pray for you every night!' I always thank them for their prayers. The more support I receive the easier each bad health day is.

As luck would have it, the local Hindu temple has a fine array of stairs to get inside. I loathe stairs. At home I crawl just to get up them. Crawling in public is not an option so I sighed (inwardly) and began the long long trek up alternating between clutching the railing and cane. This is where the 'spring chicken' aspect comes in. Even the people with canes were offering their help to get me safely up the stairs! Not only were they ascending with ease, they had energy with strength to spare! Half of them were most likely capable of carrying me up there. 

I think it did not cross my mind until later that perhaps my chronic illness was a bit of a morale booster for others.You could see it made people feel good to be able to help me out. Especially when most people are used to people my age being the ones always asking to help them out. Almost like a role reversal where I was the 'frail elderly lady' and they got to be the 'strong lively counterpart.'

Now I can look back and laugh. How strange to think my chronic illness makes people of all ages appreciate their own health. I know I definitely appreciate it. I also appreciate the kindness of people who know what it is like to need help getting up the stairs. I'm glad I could make you feel like 'spring chickens' again. If I make it to the 80s I hope I can follow in your footsteps. Until then, keep on rooting for this chronically ill gal.

If you would like to read more about 'My Cane. My Fabulous Medical Accessory.' This LINK will lead you to my squidoo writing.

7 ThingsThis Chronically ill Week Has Taught Me!

1) Never ever assume the answers people give are always going to be the right ones. No matter how much schooling you may have, there is always a definite possibility you are mistaken.

2) 'I'm chronically ill' is an excuse for wearing a sundress when it's forty out and raining. It's just not a very good one...

3) Wine tastings should be an annual must. Going a year since one is a tragedy and definitely not to be repeated. 

Cherry Blossom Festival at Night, Japan. Every trip starts with a dream...

 4) Just mentally planning a dream trip to somewhere will definitely raise the spirits and bring new life into your day.

5) "There are many unusual things in this world. Everyday events occur that cannot be explained. Bizarre phenomena that often go unnoticed because people close their eyes to what they don’t understand. But the truth of the matter is, there are many unusual things in this world. And people…. People are the most mysterious of them all." ~ Yuuko Ichihara 

6) Cry about the unfairness of the world and let-downs of the past. Then dry those tears and move on. The future is filled with living not longing over past regrets. 

"Alone Time"

7) +Wasim Muklashy title post which said, "Yay!! My Stuff on Stuff For Your Stuff!!" made me laugh really hard. I have no idea why but it did. I do, however, know he is one amazingly talented photographer! In case you missed the post, here is the LINK to his work and the perfect place to finally get something unique this year. Ipad cases, coffee cups, you name it. As for me, my favorite has got to be this beautiful print: 

Expedia Inspiration for A Chronically ill Trip to Hong Kong!

The latest  +Expedia commercials have people asking, 'if you could go anywhere in the world but had to leave right now, where would go?' Last week it was to finally see the island of Murano and revisit the beautiful Venice. This week is most definitely Hong Kong!

Last year my father had a conference there and I was all excited to go. Then they ever so kindly informed me it would not work for me to go along as well. I was crushed but decided to book a flight to visit a friend in Texas instead. Evidently the only person who saw it as a good idea was myself. I said 'I'm chronically ill and not going to have a babysitter. At least if I fall there she can drag my limp body off the floor. Enough with all the sickly nonsense. Here is my definite +Expedia  inspired trip to Hong Kong! 

The must-see city view from Victoria Bay at night out from the water!

Where you would find me: Outside! I definitely would be there during the absolute coldest time possible. Everyone else would be freezing but I could be outside, seeing everything I possibly could from my wheelchair. This includes all of the markets. I was so jealous to see my brother's pictures of the live fish market, song birds, and knowing the incredible bargains on shoes?! Well worth my body's complaints! 

No visit would be complete without a stop at the Jade market!

And hey! If I'm lucky enough to bring my 'little' sister she definitely will piggy-back me around. When I get faint I will say, Hey ho! Good thing we both own so many scarves! Just tie me on and keep on going! You don't have to be conscious all the time to fully enjoy your trip!

Cable Car! Not for those afraid of heights!

My Must-See: After seeing my older sister's photos I now KNOW my absolute must-see will be the Hong Kong Ngong Ping cable car view of the city from every direction. I have no fear of heights. In the Alps we would take cable cars and I loved having a view from all over. The last time was actually on the way up to Masada with an amazing view of the Dead Sea for miles upon miles. Thus why it is a must-see. The site of the city will be one I know I could never forget. No matter how much my memory has lately been affected. 

Now I see why it's the world's largest outdoor Buddha!

   Included in the cable car experience will also be what you experience on the other side. One of which is called 'walking with Buddha.' For me it would be 'Rolling with Buddha' as I would be wheelchair-bound. No matter what my legs manage to do I plan on following the path of Buddha from the beginning introductions to rolling through the Path of Enlightenment. Also, I do not know for sure if this route includes the largest outdoor Buddha in the world. I do know it is on Ngong Ping, Lantau Island on the peak of the Muyu Mountain. Hopefully I could visit there too.

Steamed Groupa. Looks Delicious.

What I shall Eat: Gluten-Free would be quite the adventure with no enterpreter by my side. I envy my brother's ability to eat anything which does not eat him first. I want to try snake for sure! And I want to pick out my live food and have it made for me right there. Nothing beats the freshest of fresh food!
     As for a restaurant of choice, I would love to be eating fresh seafood in Aberdeen Harbor at the magnificent and intricate floating restaurant anchored in the harbor there.


Where else?: There is so much to see in Hong Kong it is hard to just pick a few choices for my blog. I will go with a few of my absolute top picks. Here they are:

Disneyland. Hong Kong style!

1) Victoria Bay. I am told this is one of the most beautiful night views of any city in the world. To get the best light show possible you need to take a view from the ferry on the water.

2) I am a night owl. So the district of Lan Kwai Fong is on my list!

3) Is it wrong to want to indulge my childhood and see Hong Kong Disneyland? I hope not because I hear it is pretty dang amazing.

Chronically ill Anger. If Ya Don't Vent It. You May Just Explode!

As my illness progressed and I found out just how incompetent so many doctors of mine were I grew very angry. Fortunately, I am not a person who holds on to anger very well. I try to but end up laughing instead.* I  am definitely not saying I laughed away my feelings of anger. The first year of bad doctors, painful tests, treatments which sucked, and a growing horror at realizing this was not a dream did leave me angry. If I had not vented I might have exploded.

*If I get extremely angry, which has only happened a few times, I go into a sleep coma. This means I'm spitting mad one moment. The next thing I know I wake up and feel much better. My body just reaches a threshold. At threshold anger point my brain says 'you better lay down now. If you don't you will fall asleep on your feet. You will then look like a YouTube narcoleptic dog. Better do it.'

The image which comes to mind is of Violet in Charlie and the Chocolate Factor who swells up like a blueberry. I swelled up with anger. If there had been no 'dejuicing' aka venting I would have exploded. Hopefully not in blueberry flavor. I prefer pomegranate or possibly raspberry. Ah. The point is venting is one of the keys to survival.

Many people are shocked I am not angry about what has happened. They actually get angry for me. I believe it is part of showing their support. For me I say: there is no need for me to be angry if you are. Besides anger takes a lot of energy. I don't have the energy for it. I need all my energy to keep on getting through each chronically ill day.' This has been my approach for over two years. I thought I was past the angry part of my illness.

Then finding out about the damage caused by my accident brought out emotions I had no idea even still existed. At first I was in shock. Then shock gave way to anger. Neurologist #1 had said there was a finding and I know there was. I read the medical records later not thinking anything of it. The pain of knowing she thought so little of my case to investigate an oddity was dowrnright devastating. X-rays require about 2 minutes of time and can be developed in around ten minutes. The process is simple enough and she could have done it but did not care to.

I was angry about the unfairness in life. Horrified at discovering if fixing my spinal issues would mean three years of my life were wrenched from me because no one gave a damn to look close enough. Do not think I blame all of them. My cardiologist is wonderful. His job is to look at my heart. Not the spine. My actual doctor has been doing everything he can. Because of him I am not wheelchair bound. No. I truly am angry with the early doctors who fumbled and hemmed and hawed and blamed the accident as making things psychological. How stupid! What a waste!

The spinal problems are growing worse and worse and pinching more nerves and causing more issues. My prognosis is hopeful because I am young. The accident happened three years ago, the concussion two years ago, all of which is relatively not a long period of time. He was horrified at the idea of this going on for years and years. Months of treatment for three years. Can you imagine how long twenty, thirty, forty years of damage would take to fix?

For the first time in months I felt something about my illness other than my usual positive outlook. I felt rage. There were swears. Tears. If I had not been using my walker I might have been tempted to start throwing things at the walls. I think my friends were actually glad to see this side of me appear. To them it represented me actually expressing emotions they believe to be justified.  I have my own reason for not dwelling in those emotions. They can easily make a person bitter. You cannot live in the past. What happened is over and done. There is no way to change it. Griping over it and hating the people who have wronged you is no way to live.

After a few solid hours of this I finally told my friend there was a definite positive to the situation. As those who read my blog know, I discovered for the first time a waterproof mascara which held up to chronically ill standards. I really must thank CoverGirl. My friend said I amazed her. Here I was in pain, angry, life was so unfair for me, and yet there I was making her laugh! I laughed too. Life is to short to let anger and regret rule you. There were still tears that day but they have dried up now.

Venting is a part of life. So is the human need to cry every now and then. The feeling is almost refreshing like the way I feel when I finally clean out my walk-in closet and have everything perfectly arranged again. Clearing out the chaos is never fun but it feels good to be able to easily find what you need. Life has clarity. The anger is gone. The hope has returned and I will get through this somehow. I will not ignore the past but my energy is best used on hope for the future!

The Spine-Twisted Secret Lurking Within this Chronically ill Gal

The latest chronically ill discovery has been a complete shock. I have had to come to terms with the understanding between the relationship of my roll-over crash months before my body fell apart and where I am now. To help clarify before revealing the lovely spine-twisted secret so kindly sprung upon me I need to back up. In mid-June of the year I got 'sick' I experienced something no one should ever have to.

While driving to my college to take a test for a summer course I had a car accident. By accident I mean, some douchebag would not let me merge and cut me off (though I had the right of way). The reason I needed to merge was because the two-lane quickly becomes one as it goes into the freeway. To compensate I had to move back into my now half-lane. This would have worked had we not been on a sharp curve which goes into the freeway. The curve and speed* meant my car lost control. I went down the steep hillside towards a fence. Someday I will share in detail but for now here is the jist. My car did not hit the fence. The fence, the sheriff later told me, acted like a clothesline and threw my little jeep 25 feet in the air. Everything not belted down was thrown out of the car. I smashed down. The windshield shattered but held together. Instantly the car rolled over. At that point I told myself, 'I am going to die. No way do I survive this.' To my surprise I survived. The car smashed down on its side and I was left with three inches of view through the now-glass free window held in place only by my seat belt. In the end, I survived (for a variety of reasons I will one day explain) with only a single stitch to my finger.


*I have always had an insane fear of getting a ticket. Why, I have no idea, but it meant I always drove my mother crazy by either going exactly at the speed limit or slightly under. So I definitely was not speeding when I lost control.


We were all so happy none of us considered the accident might have actually left more serious unseen damage. No one thought differently of it. When I became sick I rarely brought it up. No one really investigated. Although Dr. Frizzy hair, aka neurologist #1, saw several problems with my C6-C7 vertebrae on my first spinal MRI she brushed it off. No one bothered to do a whole spinal x-ray, MRI, or CT. You had pictures of pieces of me but no one thought to assemble the puzzle.

Until now. Before the x-rays were even taken the doctor moved my neck and pressed different areas. Yes, they hurt but the Traumatic Brain Injury neurologists I saw after my later concussion assumed it was part of the slow recovery from the fall causing it. Plus, I do not go around pushing on areas which cause pain. Especially when doing so aggravates the vertigo, dizziness, and shaking. I was not pleased when he did so. No one really likes collapsing during a standing x-ray or splashing water all over themselves because their hands make holding it properly impossible.

After developing and examining the x-rays he called us back into the room. When we came in, he had a normal spinal x-ray there. Then came my x-ray. My mother had a look of shock. She has a master's in language, not medicine, but even she was floored by it. I wanted to deny it as mine. Unfortunately, my unique belly button ring assured the world this was definitely me. 

My spine was, for lack of a better word, demented. He traced its outline. The marker curved in and out. My brain had a bizarre thought of 'it looks like snakes and ladders.' The other x-ray was like a perfect ladder and mine was like a snake shape. To make matters worse in the C-6/C-7 are the spine was crunched together and twisted. He held up a special model of part of the spine. Put your finger in the area here. I did. 'This is what the spine is doing' and twisted it. My poor finger got squished and pinched at the movement.

The worst part was him proceeding to explain what the spine had done during the accident. I felt like he had been in the car feeling the exact moments. Yes. My body had done that. Yes. It had landed with my neck solidly on the belt. Yes. Yes. Yes. I wanted to scream no, no, no! I had been cut out with the Jaws of Life. Survived what should have killed most people. All I had was a scar on my finger as a reminder. This was impossible! Yes, the MRI of my upper spine had showed an issue there but surely someone would have noticed this parody of a spine.

At this point my shaking and vertigo had gotten so bad I had to lay down. The doctor must have assumed I was distracted. While I rearranged myself on the floor he quietly mentioned to my mother this was the worst case he had seen in over twenty years. Of course this does not include patients with scoliosis or other spinal diseases. Just unfortunates who have massive trauma and then faint and fall on their heads. Wait, that would be myself. 

For those who read my blog you have already the first treatment experience. We need to put my spine to rights. He estimates it may take two-three or more months and I need to come twice a week. The hope is by releasing the twisting and pinching of the nerves and putting my spine to rights my health status will be greatly improved and (dare I hope) even allow me to finally get back to life as it should be or was anyway.

I am taking it one moment, one hour, one day at a time. He told me I seem to be a very strong and positive person with a great deal of determination. I prefer to think I am to stubborn to give up. Though I do have days where I would like to. We shall see where things go. The waiting and physical effects of putting my body to rights are the worst parts. I have been getting a lot of prayers and support to help me through this. I always laugh when people tell me they are praying for me and thank them! I laugh because its a joy to know how much people care. And I thank them because every prayer and thought is precious to me. Knowing they see me despite my health is a wonderful feeling!

Hey Ho! Bad Chronically ill News but At Least CoverGirl Keeps My Lashes as Lovely as Ever!

I saw a new specialist who had a strong hunch about what might be behind some of my health problems, maybe all of them. For now I will not go into the details of what was discovered via x-rays. I am a jumble of emotions but mainly in physical pain right now. After all the details he decided to begin our now going to be twice a week treatment right away.

As part of my chronic illness, my brain has trouble with quick movements, lots of motion occurring simultaneously,* and fluorescent lighting (weird, I know.). By the time he had actually gotten through  the testing and explained what was all very wrong I had already: 1) collapsed 2) started to experience ever-increasing vertigo 3) begun to get the signs of the impending fainting 4) had the shaking get worse. I finally even gave up on sitting in a chair and laid on the floor because I could feel the faint coming on. If I had been completely myself I might have pointed out waiting a day or two could possibly be a very good idea.

*My father enjoys watching a certain cable channel which has numbers moving one way on the bottom of the screen. One way on the top of the screen and the guy in center is always moving. I call it the 'seizure' channel. My brain can't handle it. It's like taking the carousel of vertigo I have slowed to about a speed of 1 and jacking it up to full speed. Definitely not a pretty sight so I steer clear of it.

After the treatment I ended up fainting. Waking up I realized: 1) get me back on the floor before I get another concussion from hitting it head first 2) I'm going to be sick, violently sick 3) I don't see a garbage can in arm's reach. I can't remember the last time I saw a medical person calling so frantically for something for me to vomit in. Be proud. I managed to not puke on his floor by literally holding it in. Then proceeded to violently throw up, make stupid jokes, laugh, throw up so hard it was painful, avoided narrowly passing back out in the bucket, and didn't get my long long hair in the sick.

One of the worst parts of being so sick is my eyes start to water. It's like the vomiting has to be accompanied by tears. Not because I am sad or upset. They just show up. Out loud I said, "O. Now I'm going to have raccoon eyes." And then had to laugh a bit (before vomiting again) at how silly it must seem. There I am hearing horrible news, in pain, throwing up, and I'm down because I will have raccoon eyes. There are times I have to laugh just because it's so absurd.

I won't describe the long process which followed after the being sick stopped. Let's just say it took a long time for my brain to accept where the floor was and get it to stop moving so fast. A strong cup of hot black coffee (caffeine style) helped immensely and by the time my niece fell asleep I was able to start getting ready to go.

Then I saw it. My reflection. Yes, there were the 'I've been crying' look to the eyeballs. You cannot really help what your eyes do but you can do something about your lashes. For the record I have been going in and out of waterproof mascaras trying everything from high-end to bargain to find ones which can last through sick sprees or serious pain happenings. So to actually find out I had no raccoon eyes and my lashes were still thoroughly intact...it was a beautiful moment! I felt like there was a Surname Positive Thinking Thought Bubble Above Me: Treatment Can Be Brutal but At Least I Discovered the Perfect Waterproof Mascara for all These Chronically ill Teary Moments. 

I feel like I should be sending a letter to CoverGirl to tell them they really made the difference in my day. Without that bright spot I might just have lost my sense of humor completely. And that would be such a waste of mascara. After all, what goes better with long gorgeous lashes then a lively smile?

Chronically ill Hope. It's Like Scented Antibacterial Soap!

Chronically ill hope. I have found the perfect simile for it: it's just like scented antibacterial soap! Before you think my shaky hands have traveled to my brain. I feel I should explain.* Instead of doing it the long paragraph way I am breaking out into something new for my writing. The explanation in a list format!

*This rhyming reminds me far to much of the Grinch. Perhaps it would be better to say...traveled to my brain. I feel I should elaborate. That sounded stupid too but I can't think of anything better at the moment so bear with me.

Chronically ill hope is like scented antibacterial soap! Bloody hell that also rhymes. It's going to drive me crazy so I will be substituting soap for a 'cleansing substance.' This means the same as soap but saves my sanity by not having to sound like a demented poem in every other sentence.



The soap- Cleansing substances come in all shapes and sizes. So does a chronically ill person's view of hope. For some of  us our hope is the liquid type. Those people do not need to work hard for it to fill our hands aka our hearts. For others hope is like a bar of soap. Sometimes it is fanciful and pretty but mostly just practical. No matter how it may look those people have to work hard to make it happen. 

Bar or liquid?

  Whether liquid or bar soap the end result is the same. Eventually it will run out. The liquid type is usually the first to disappear because it comes so easily you are left emptying the bottle all to soon. The bar type usually lasts longer. Working hard for hope may make it more difficult but it also takes longer to disappear. 
    Hence why I always purchase the bar for Step 1 of the Clinique Cleansing System. Personally my hope is more like the liquid cleansing substance but I often wish it came more along the lines of the bar type. 

Gummy Bear soap. Weird.

Scented!- I am very picky about the scent of cleansing substances. If you are going to risk smelling like a certain fragrance then it better be a damn good one! The same goes for hope. All of us choose to view it differently. Some like a delicate scent, like that of a fragrant flower, others prefer a more powerful scent, like an overpowering manly soap, and then there are those who prefer unscented. They keep their hope silent from the world around them.


Antibacterial- Antibacterial substances kill of 99.9% off the bacteria hanging out on our hands. This is like having a strong hope. When hope is strong it will take out all the negative thoughts and truths which could hurt our belief in the better future to come. To the world this seems like a great idea! Do not let anything get in the way of your hope! Unfortunately, over time killing off the bacteria* including truths comes back to haunt us. Those people who do this continually can end up living in denial over the reality of the situation. Hope needs painful truth. Just like yin needs a yang. Keep out the truth and soon you just end up losing the true beauty of what it means to hope.

Green and Slightly Dangerous!

 *Killing off 99.9% off all bacteria is a bad idea. We have neutral and good bacteria on us for a reason. Hence why extensive use of antibiotics often leads to problems. Taking out bacteria which could lead to dangerous scenarios, like staph infections is obviously a good idea. Removing good bacteria constantly will end up hurting the immune system in the long run. Believe what you will but this is my personal view and not really a significant part of this simile. Just pointless opinionated drivel. 

Generic or Brand Name?- Personally I think this does not play a role in hope as a cleansing substance. If it works, then it works. Paying a heavier price for your hope does not guarantee a stronger or better hope for the future.

Final Note: I had a lot of fun with this entry. Life, like hope, is a gift best shared with others. Sharing this thought with the world was definitely fun for me. I hope you enjoyed it!

7 Things This Chronically ill Week Has Taught Me

1. People like quotes by Cookie Monster. Evidently over 2500 people on Google+ that is. Who knew posting what I found to be great would be shared by so many people?

Wisdom from the Beloved C.M. Himself!

2. No matter how many times I state I am in a long-time relationship with someone I still get random people hitting on me. The long-time boyfriend finds it to be rather amusing. I find it to be rather tedious; especially when the comments are written using poor grammar and spelling. For the record: flattering comments are received better if they are spelled correctly.

3. I will never understand my mother's passion for John Wayne. Having just watched, She Wore a Yellow Ribbon, has confirmed this.

4. Telling oneself you can mentally go without a nap is all well and good. Then reality hits and you end up in a two and a half hour sleep coma which effectively stifles most of the night's plans.

5. Does having a blog count as a job? I definitely do not think so. Jobs require (most anyway) being able to mentally and physically do things. Blogging is definitely not physical and my blogs are typically low on brain power.

6. No one will let me near them with scissors or allow me to pin fabric close to their hand vicinity. I do not blame them one bit. The shakiness makes me worry for the safety of my own fingers. 

7. I have over a 100 ringtones and something different for everyone in my phone. This would be great except I hate hearing my phone. Hence why it remains on silent almost 100% of the time. My only point in actually having all those ringtones is for all the alarms I set. Again with the 'I do a lot of random things which make no sense even to me' theme.

Chronically ill Travel to the island of Murano, Italy

This week's chronically ill travel itinerary is to a place-within-a-place where I have already been. What I mean is...I want to visit the island of Murano which belongs (in a way) to the city of Venice in Italy. To clear up the place-within-a-place what it actually means is I have been to the city of Venice. I have taken a gondola ride on its' canals, visited St. Mark's Square at night, and gazed up at the Bridge of Sighs. Venice is the place you visit and never forget. So of course I would revisit its wonders after finally getting to see the island of Murano.

La Serenissima

Where you would find me: The island of Murano is famous around the world for its glassmaking. I did visit a glass factory while in Venice but have always wanted to actually visit the island famed for its glassmakers. I plan to make my first visit to the glass factory and from there anything goes in looking for a beautiful aventurine tea set.

The Art of Glass-Making

My Must-See: In Venice we got a very very short demonstration on how glass is actually made by hand. I really would like to see more of the process. Glass-blowing and Glass-Making have always been interests of mine and I cannot help but be in awe of the craftsmanship which goes into every piece of Murano glass. I definitely want to do more than browse the shops and would plan on at least one go-see at the glass factory.

Thank you to this GF Traveler to Venice!

What I Would Be Eating: For this I would take the water bus* back into the city of Venice. Evidently there is a gluten-free gem called L'Osteria All'Ombra. According to other 'glutards' they have astonishingly good GF tortellini, pizza, and even a heavenly Tiramisu for dessert.

 *I have taken a water bus in Venice before. The water bus looked like a city bus only floating. It was a bit odd to see at first but definitely a great way to travel.

Carnival of Venice

Other Tidbits & Would-Like-To(s): I would love love love to visit Venice during Carnival. We arrived in Venice not long after it had ended and I have wanted to go ever since. Definitely on my list of must-dos!

I Apologize to My Wonderful Readers. Feel Free to Blame the Pervert

After today there will be a change in 'Fighting My Chronic Illness with a Flair.' I am really sad about having to do it but I will now be disabling comments on all of my blog posts. I love hearing from my readers. You guys are truly one of the reasons why I keep on writing and living each day. Comments from +Wasim Muklashy , +shonie Hutter , +Mark Shirley  , and +Julia Chi (to name a few) really are one of the awesome parts about having a blog. I will truly miss what you have to say about my writing.

I'm always a bit crazy, a little weird, and not afraid of what others think.

However, today has shown Google+'s spam detection on comments to be a major letdown. Sometimes it has detected comments where I am like...um...that's actually a very nice comment but it's awesome you guys really look out for me! No hard feelings and I approve the comment. Today I had several lewd comments on multiple posts from one of the crudest perverts I have experienced here. It's true I often spam comments which have to do with my looks or asking to be in a relationship with me.* I do not, however, block those people for saying so. Unfortunately I had to block/mute/delete/report to Google the user known as +Swagball Hoodrat. His comments made my blog post inappropriate for readers under the age of 18. Hell, I would not want anyone I know to read my posts with his crude sexual comments on there.

*For those readers who have taken it upon themselves to spam comments for me from previous blog posts; I really appreciate you doing so. Those comments have nothing to do with my writing and I thank you for acknowledging that.

I have given you his name so you can watch out for this person. As of now the only person in his circles happens to be myself. I do not know if I get removed by blocking/muting him. I sincerely hope so. You can check if you have a desire to as I plan to move on past his stupidity and refuse to let such behavior affect me.

To sum things up, I apologize to my readers. I really love hearing the positive words you have to say and it will be missed. Do not worry about this blog ending. You can expect to get posts from me until the day I either die or become so healthy I decide to go trekking through the jungles or mountain climbing in areas with no internet connection.

If you are upset then feel free to blame the pervert known as Swagball (honestly, Swagball?!). Truthfully if I were to meet this sucker in person I would be tempted to give him a good smack to the face or kick below the belt. He definitely deserves it for being disrespectful in his words to the entire Google community. That being said, if I ever were to start an adult-content blog* he would be free to write such stuff.

*Which would never happen. I would feel silly trying to write adult-content stuff. It would sound like a love scene from a C-rated movie. Not to mention, sharing details of your romantic trysts is just a bit awkward.

Much Love and a Happy Thursday,

L. Krause

CFS. Not Tired. Just Chronically Fatigued...All the Time

I realized even the people closest to me do not understand what it means to have CFS. They confuse fatigue with sleepiness. If you want an expert on the difference then I am the person to ask. The reason is because for years I have suffered from a sleep disorder. At the worst point my day consisted of sleep, class, sleep, class, sleep, lunch/nap, sleep, class, sleep sleep sleep, function between the hours of 9 pm to 1 am. Not to mention if I got to upset I would pretty much roll over and go into a deep sleep. You couldn't even have an argument with me because every time I got overly upset I fell asleep.

Treating the disorder left me a new appreciation for how wonderful actually being awake is. So there you have it, I understand what it means to be 'sleepy.' Now I understand there is a worse thing than being able to literally fall asleep all over. It goes by the name of Chronic Fatigue Syndrome and is a serious bitch to live with. Not until today did I realize not even my long-term boyfriend understood what it means to live with this shite.

I'm definitely going to have to get one of these shirts!

I'm the reason for his misunderstanding. I keep my fatigue a dirty little secret. It's actually not to hard. I just make sure he does not visit until at least five or six in the evening. By that time the afternoon fatigue has somewhat abated. The impression he gets is of me being somewhat lively. Thus why I had to explain what truthfully happens most afternoons: I go into my fatigued coma sleep. Wake me at your own risk. My body does not react well at suddenly being woken. Expect abrupt movements and a lot of wide-eyed 'whhhaaaaa??!!'

Even after I am awoken I still do not feel 'awake' or anything in the realm of energized. I live in the constant state of 'I have just gotten over a long bout of a particularly nasty flu' feeling of fatigue. You cannot fight it with sleep or rest. There is no escape from it. Think of it as being thirsty. You drink and drink and drink all the time. The result is you feel a little less thirsty with drinking all that liquid but at the core of it, you are still thirsty. That is chronic fatigue syndrome. You can rest, sleep, rest some more, and maybe you will feel slightly better but the fatigue never ever goes away.


I think about other people who live with CFS and feel for them. How to explain what it really feels like? Who could possibly understand why it is impossible to do something most find so simple, like hold a job? Only those with Chronic Fatigue Syndrome can honestly say they do understand how it feels to live such a life. It sucks. A lot. But at least we are not alone even if our mutual bond happens to be understanding each other's feelings of misery.

To everyone who does not live with CFS on a daily basis I want ya to do something for me. Learn about Chronic Fatigue Syndrome. Why? Because someday someone you know or even love could develop the disease. Learn about it now so you do not make yourself look like a moron later. Trust me. Take a very very fatigued person, put them with someone who makes idiotic comments or thinks their condition may be more of a 'mental' thing, and you can expect to either bring us to tears or get a punch to the face. Ain't nobody got time for your ignorance.

So learn about Chronic Fatigue Syndrome. It's not an obscure condition to find and you do not have to be a scientist, medical student, or genius to understand what sites like MayoClinic have to say on the subject. I will even help you. This LINK leads to the CDC's site on Chronic Fatigue Syndrome. You can also go to Mayo Clinic.com or browse the free journals on Pubmed.com. Just don't go to WebMD. Seriously. You go on there for a headache and leave thinking it's an inoperable brain tumor. Don't risk it.

Hey Ho! I've Got the Flu but My Hands are Steadier

Yesterday I was feeling downright bad. Today is awful as in..I have the flu type misery. There are times when I cannot discern if I am suffering from flu-type sickness or just feeling 'worse-than-usual-with-more-random-problems' sickness. I woke up today with everything hurting. On the one side this is not entirely unusual. However, having ears which hurt is not in the usual and a sure sign of me being normal people sick.

If that were not enough of an indicator the feeling of being cold definitely points to me being sick. I know when it is cold, I can tell the surroundings are cold, but I never feel cold. Today I definitely do. I have been running my hot water heater for lovely cups of peach tea, sipped in porcelain tea cups of course. The sweater section of my closet was finally visited although I grabbed the first thing I saw (an A&F hoodie if one must know). Best of all, the 'fake' fireplace got actual use for the first time this fall. Nothing makes you warmer than flames which click on with a button, produce no smoke, and require no maintenance.

Not surprising my day has yet to accomplish little more than watching DVR'd shows and arguing with the dog over why he has to bark at one door when I am at another, make me go up the stairs to let him in the deck door only to see his tail go down the steps to where I was waiting for him in the first place! Sometimes I have to believe having a dog as your only companion for most of the day is crazy.

All in all, in keeping with the Surname positive thinking I have to say there is one very good thing about today. My fingers are no longer shaking like they did yesterday. They are much steadier and my hands look normal. Not like they belong to someone who is three times my own age. See, it's the little things in life which truly decide whether a day is worth getting up for or not.

7 Things This Chronically ill Week Has Taught Me

1. Babies do not need all those fancy schmancy new toys. My niece prefers toys from thirty years ago over the modern ones she has at home. Or a piece of German bread. For some reason sucking on a crust is so much more exciting than the latest baby toy on the market.

2. Spoons are wonderful for these shaky hands. Without them I would be wearing my pot roast.

3. There should have been a support group for Excedrin users when it was recalled. We are still talking about those dark days of no Excedrin even months later.

4. Fall is at its most beautiful here in November. Sadly, winter snow will be here any day and the glorious colors won't be here for long.

5. Fatigue is beastly. I hate it.

6. Watching Anne of Green Gables has renewed my love for the beauty of Prince Edward Island. I fully intend on visiting its beaches some day.

7. My brother has a closet for an office. I told him if I had one I would put up a picture designed to look like a window with one of those moving pictures inside it. Then whenever I got bored I could still 'look' out the window and day dream.

Chronically ill Travel to Prince Edward Island

So if Expedia said, 'hey! where would you like to go today?' I have a definite answer for this week: I would love love to visit Prince Edward Island. By visit I mean I have actual plans and thoughts on places to go. My mind can be a bit faulty so here goes my travel 'itinerary' of my 'trip' to Prince Edward Island!

Cavendish beach

Where you would find me: Watching the sunrise/sunset on Cavendish Beach. Part of the Prince Edward Island National Park, there are miles of sand dunes to wander through, sandstone cliffs, and barrier islands a plenty. People always forget beaches do not have to be in the Caribbean to be beautiful. The beaches of Prince Edward Island are of pristine sand which goes on for mile after gorgeous mile. Being National Park protected mean no resort complexes to block the views.

Green Gables

My Must-See: I grew up loving the Anne of Green Gables films so of course, I would go see Green Gables. The land is now a National Historic Site and the town of Avonlea is made to appear the same as in Anne's time. I am hoping the journey there will not be like the time we went to see the 'Heidi' house in Switzerland where it was a half-hour journey that turned into a 3 hour trek up the mountain.

A Spread of Prince Edward Island's Best

What I Would Be Eating: Being on the sea means it is almost necessary to take advantage of eating great sea food. Mussels and oysters will always freak me out but I shall give them my best try. I have always preferred crab to lobster but who knows? Perhaps Prince Edward Island lobster will change my mind forever. Most likely, I will be eating their local tenderloin and tasting all the local berries. Maybe even drinking a little red-currant wine like Marilla makes in Anne of Green Gables.

Chronically ill Hopeful Future Adventures in Prince Edward Island: 

*Deep Sea Fishing for Bluefin Tuna
*Go Sailing Again
*Visit a PEI lighthouse
*Prince Edward Island Culinary Adventures-meet the people who are responsible for collecting all the local cuisine, help them harvest, and then cook with them.





Positive Thought of the Day: Simply dreaming of a vacation is a mental vacation all on its own.