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.