Sunday, March 30, 2014

Seite Things This Chronically ill Week Has Taught Me

1. There is no such thing as limits to wine tasting. Be friendly, love life, and no one will tell you otherwise.

2. Looking around me makes me want to try landscape painting again. The spring has yet to arrive but there's a certain beauty in winter's final hold.

3. When I eat pizza, I don't order to share. Why this surprises people is beyond me. I love a good gluten-free pizza and I intend to eat it.

4. This second concussion has screwed up the emotional area. How people survive with so much emotion in them is beyond me.

5. Maggie Smith is, and will always be, one of the most amazing actresses out there.

6. It's interesting to see your fellow promising college coworker and know we both feel the same sense of failure in ourselves. 

7. I'm never going to win at pull-tab cards yet a part of me holds out hope every time.

Thursday, March 27, 2014

If Only Chronic illnesses Could Make One a Better Chef

I wish my creative talents gained from being chronically ill would expand into the realm of cooking. Most of my problem lies with the eating factor. Food/eating holds little to no appeal. When I was younger it was from being sick all the time. No one figured out it was the Celiac's behind it until later. The final result was the doctor's belief being undiagnosed gluten-free left me about 5 inches shorter than the rest of the family ladies and a complete 'meh' attitude towards food.

People love to ask what it is I actually eat. With no eggs, no gluten, lactose-intolerance, and being yeast-free (sugar-free is negotiable most days) the answer is unknown. I don't even know what I eat. Some days I have to remind myself to eat. My mother actually will ask me if i have eaten today and what I've eaten.

My family adores food. They still have trouble understanding my nonchalance towards it. They like to call it the 'see food diet.' They see food. They eat it. Which is why I was slightly incredulous when my mother texted/then called to ask if I could prepare dinner. I  cook based on when hunger strikes. So if I'm not hungry, then I don't actually do much cooking. And cooking? I believe is best when a person actually loves to eat.

O my. I love asparagus but every time I have attempted to cook it, it was completely inedible. Dangerous indeed. When it came to the chicken aspect, I can do that. My boyfriend believes differently. Me. Hot stove. Frying pan. He senses the impending doom. After our discussion I happen to be sitting on the other side of the island, about a solid 8 feet from the pan. The asparagus I prepared but refrain from cooking. Poorly cooked asparagus is a tragedy of the greatest kind. I refuse to be the one who brings it about.

We shall see how all this goes. So far no smoke, burning smell, and I am enjoying a delicious rum with coke to celebrate. Cheers to trying something new each day!

Wednesday, March 26, 2014

Terra Cotta Warriors Provide Insight to the Chronically ill Battle

No chronically ill visit to China would be complete without seeing the Terra Cotta warriors in Xian. To say the least I was highly impressed. I still feel a bit awed. Looking at the pictures I see a likeness between them and all of us living a daily chronically ill battle.

 The history book pictures give the mistaken impression they found all the warriors looking pristine. They appear as new as the day they were crafted. Not unlike how we can appear to the world. I try to look like I've never heard the words 'chronically ill.' Some days I succeed. Others not so much.


What they really  found

The truth of the Terra Cotta warriors is sad. They were found in pieces. A complete historical jigsaw puzzle of arms, legs, heads, torsos etc. In the early days of this 'nonsense' I was a jumble of broken up pieces. Part of me was depressed, another insanely hoping it was all a fucked up dream, and the other just to confused to hope.






The museum's terra cotta warrior 'hospital'
In the museum you see a Terra Cotta warrior 'hospital.' Each piece is put together. Then refired to bring them back to their original state. We are a lot like that too. Over time I slowly started to bring together the pieces of me. 






Holding the pieces together
The process was tedious. I had to rebuild who I was and what I believed to be my purpose. The decision to hope was like the fire which completed me. Without it I would have been like the warriors held together by cellophane and determination. Complete but ready to fall apart all over again if not careful.

Today I see myself like the ones the world sees. A mystery as to the why they came about. I don't pretend to understand why my body had to fall apart so suddenly. Maybe one day we will know, perhaps never. In the end I see it as not truly mattering. The whys do not when you can see the beauty in what surrounds you. 


To those who have a chronic illness, know someone with one, are terrified of the medical world suddenly surrounding them, or find their lives a complete wreck...I will be honest. The path to rebuilding who you are is a long one. The pieces are not like my one-year old nieces simple puzzles. More like the ridiculous 1000+ jigsaws. You will need dedication to do this. 

The final result? Amazing!

If you have help along the way then wonderful. If not, know I am rooting for you to complete this. Keep up the hope. If you do then the pieces put together will stay that way. Sure there may be cracks which appear but they can be strengthened again.

The final result is something to be admired. You can inspire those around you with all you accomplish. Every day is worth living for. Tell those around you who let life's little things get in the way. Today's troubles do not have to mean the end of tomorrow's joys.

Venous Schmenous

Cardiology visit was today. I was a bit amazed to see the PA in the room even before the nurse. Typically, it goes : nurse/EKG, PA , and finally cardiologist. I saw this as a good start to the visit. Then again, when I was little  I also used to eat ketchup and bread sandwiches. Point is my intuition can be a tad off.

First comes the good news: the heart rhythm looks good *cheers.* The heart murmur remains the same *whoo hoo!* I should have kept quiet and walked out feeling a success. Instead, I brought up the swelling and pain in the legs that showed up a day or two after the return flight.. I merely thought they would give me a bit more advice on what else I could do about it.

What I didn' t expect was the PA to ask if I had gotten a venous ultrasound. Again with the should have gone to the doctor. My mother was practically gloating when I told her this. She has been nagging me about just that. I can only give the truth: I loathe going to the doctor and will ignore just about anything to avoid it.

The most amusing part to me was the PA. He said I should get the venous ultrasound, asked some stuff, listened to the heart again,  then made his exit. Five minutes later comes rushing back in (fastest I have ever seen the man move/most expression) to inform me the ultrasound is to check for blood clots. I told him I knew all about DVT. Long flights + sedentary body + poor circulation = possible blood clots in the legs.

Back to seeing the actual cardiologist. The man has been EVERYWHERE. He started talking about his China tour/cruise and threw in a horribly uncomfortable plane ride story. Poor man. Anyway, he has the miraculous way of getting me all upbeat. Good news on the heart and then...I expect to see you in a week. My life's hope was increasing the time between cardiology visits not decreasing. Bah. Ridiculous body of mine. 

When I told my mother about the venous ultrasound (getting it in a few days) she wasted no time in giving me the 'see? I was right' spiel. I texted my boyfriend what all happened. He was more along the worried line of thinking. "Isn't that serious? What if it is a blood clot? That does not sound good at all." I say...I highly highly doubt it. Practically bet there is none and they are merely being cautious. No need to worry just keep on going with life.

Sunday, March 23, 2014

7 Things This Chronically ill Week Has Taught Me

1. Being gluten-free creates a common food bond which brings people together in the strangest of places.

2. I like broccoli. I never loved it. After eating it for five days straight...it may be a while before I go near it again.
Niichan smiles over chicken feet in Hong Kong

3. Even after years and years my mother still thinks the words 'but you're brother loves to eat it!' will encourage me to like childhood horrors like cauliflower. Really. My brother eats chicken feet, mystery innards, and anything that doesn't eat him first. 

4. Love sticky white rice. If only they made brown rice sticky then I might enjoy it more.

5. There is such a thing as to many origami flowers. My family is far to excited for me to switch to making origami cards. No need to worry. Whenever my hands are shaking like crazy I will be back to making more roses!

6. Love is never easy. Especially not when you're brain seems to be re-attaching its neurons after the latest concussion. 

7. There are times when I want to paint but am almost afraid to start. I thought I was long over those feelings but when deciding on a new style, I get a bit nervous all over again.

Friday, March 21, 2014

Chronic illness Making You to Shaky for a Fork? Get Chopsticks!

There were some very very shaky days on the tour. I had difficulty with the whole eating thing. My friend was good enough to discretely chop up my morning fruit into bite-size pieces which made life a lot easier. Still, I didn't want to be stuck using forks like the rest of my tour.


I love using chopsticks. For reasons unknown, they feel natural in my fingers. I do not know if I hold them to polite perfection but I do know they respond better to my touch than silverware. While most of our group struggled to so much as hold theirs I opted to use them at every meal.

Even when I shook I preferred the chopsticks. Most people would not believe it but they made it easier to do the food-from-plate-to-mouth routine. My shaky hands were able to hold them with ease. I believe all those years of holding pliers for jewelry making helped a great deal. Once your body gets used to using multiple tools in one hand it does not forget it.

True. Definite patience was needed to get the food but once I had it, I didn't let go. The precision to not stab myself with a chopstick in the eye was a bit daunting. Slow and steady was my mantra. In the end, it proved to be the right one. I found success with immense satisfaction. I got to do something I really wanted despite what my body did to dissuade it.

Most people might find the simple things I take pride in to be a bit odd. I once thought so as well. Now I know it's the little things we can do which make us who we are. I won't ever be an Olympic athlete or bigwig in NASA but I do hope my words reach others like me. If I could, I would just give talks to people on simply that. Positive thinking is great and all but when it comes to true life, it's about what you do regardless of the world says is 'success.' Besides, I adhere to the Surname Positive Outlook over standard positive thinking anyway.

Thursday, March 20, 2014

Takin' Responsibility for The Stupid Injuries

I've done a lot of stupid things in life. I wouldn't say my latest (kinda latest) problem is the most stupid but kind of up there with the time in Greece when my brother stepped off a curb, while loudly proclaiming his sobriety, and instantly informed us he had hurt his ankle. I wasn't drunk. Perhaps on excitement maybe a tad giddy.

You see my brother was home for only a short ten days in December. He was always so busy catching up with people in the area I hardly saw him. To make up for it he offered to do anything I wanted. Why people use such dangerous words is forever beyond me. Of course I wanted to go skating. Skating with my lovely white figure skates which happened to be somewhere in the attic. We had multiple pairs easily spotted after the move but I wanted those. While searching I got in a bit of a tight spot. My knee stayed to the front while the rest of me went in another direction. There was a noise followed by a lot of pain. 

The worst part? We didn't find my particular skates. I had to use a larger pair with some heavy socks. Never mind I could not walk on my knee properly. I wanted to skate and this might be my only chance. So I skated with my walker. The experience was glorious. Well worth the next few days I spent hobbling around trying to maintain the position or two which did not put weight where it hurt.

I saw the doctor a few weeks later and mentioned it. We figured the pain would go away and it did. For a time anyway. Every so often it would flare up. I could ignore it. Then on the flights it made a painful return. Blast it hurt. Anytime there was pain/swelling below my knees it flared up. The oddest part being the pain was in one specific site inside the knee. I can point to it (like an awkward pin-the-tail on the pain).

Handling pain is all in a typical day's work. Scratch that. Handling pain in one area at a time/maybe two is a typical day. Not pain in the knee, both legs, head, back, fever, and itchiness. I draw the line when you have to start listing off what doesn't hurt because it's easier than what does. My mother stayed late this morning muttering about DVT and calling the doctor over the leg swelling. They ache but I would say are on the mend. 

I am proud to admit I did the adult thing and told her about the knee pain returning. If my little sister were here she would probably start hugging me gushing over such an accomplishment. I'm very glad she is not. Especially since she successfully put in her first I.V. and would probably follow up the 'good jobs' with 'can I practice on you?'

I am going to admit I have been procrastinating with this entry. Calling the doctor is on my list of least-liked activities. I know I need to call. He told me to call, my mother told me, the long-time boyfriend told me...the only one who hasn't is the dog. Ah. If only I had a really cool story to say to him. The type where you rescue a baby from a raging inferno or something gradiose like so. The truth is never so exciting.

Wednesday, March 19, 2014

Feeling the legs? Worth the Pain?

There are times when the world is just to ironic. At times I have numbness in both legs (typically just one). The whole situation is annoying and often worrisome. For example, I was cleaning when I looked down to realize my foot was bleeding nicely on the carpet. I didn't feel the pain from the glass piece I had missed cleaning up weeks ago.

Most people would be excited to have feeling return to their feet. I woke up this morning from it. My feet and lower limbs ache terribly. The pain is awful. I usually have pain after long flights/even short ones. My Jobst stockings help immensely with the swelling but don't stop everything. I was surprised when the pain & swelling showed up several days later.

For reasons unknown they ache from being swollen and I've got some uncontrollable itching going on. With a fever to boot I'm a little peeved. I try, really do to properly take care of my self after any stress on my system. I haven't gone around wearing high heels, out drinking, even avoided going at the stairs to fast. This delay in symptoms is ridiculous. I hate how it comes on a day when I had plans; almost like my body is getting revenge for only giving it a single day of rest between flights. Hey now body. I didn't plan the itinerary. Take it up with the tour guide not yours truly.

Not much can be done today other than keeping my feet up. I've been awake for hours feeling a bit out of sorts at the whole situation. Perhaps this afternoon I might be able to get in a long refreshing nap. The type which leaves you wakening up feeling lazy with contentment. Until a nap becomes possible I will listen to songs from Angel Beats! and update my Live Life. Love Manga blog. Maybe I will even take a shower. Possibly have some lunch as well. Well, the shower will happen. I can't remember if I ate breakfast or not so my metabolism might be thinking lunch is delayed breakfast.

Mmmm. I think it's about time to take those afternoon pills, let the dog out, and try for a nap. This entry has been hours in forgotten making this morning. I'm out for now and wishing myself luck on a pain-free tomorrow!

Tuesday, March 18, 2014

Don't hide us away! We aren't a mistake!

On my trip I got a LOT of stares from people. Not the good type either. Being myself I was, of course, completely oblivious until one of our tour group pointed it out. For the first time I noticed the lack of people in wheelchairs, of handicap 'helps', and my unusual status.
My friend and I say Hello World from the Great Wall!

On all my travels I never encountered such a thing. Growing up in America it is almost a given you will find some form of handicap help. From ramps to door-opening-buttons to making life wheelchair easy I have taken all of this for granted. Even in Egypt & Israel, they might not always be there but people were more than willing to make an effort for this foreign chronically ill gal.

The people in China were very kind and very friendly. I wish I had known a great deal more Chinese so I could have reciprocated their tries at conversation. Truly wonderful but not when it came to wheelchair usage. I didn't learn until later why this was. My native tour guide informed me the handicap are usually kept at home, especially if they are young. I was horrified at the thought. To be imprisoned in your home and reliant on everyone to get you around is no strange concept to my life. Heck, it is my life.

Yet I have never doubted my family wants me to see the world. If they did not all they would have to do is say no. No one ever finds it easy to drag a wheelchair up the Great Wall, through the Forbidden City, and maneuvering through a crowded night market? Takes a lot of dedication. One member on our tour went so far as to say I might be thought of as a 'mistake.' She didn't mean to be cruel but those words continue to haunt me even now.

Am I a mistake? I don't believe so. Unlucky? Surely. Had an unfair turn of events? O for sure but hardly a mistake to this world. My parents have not done anything to cause my health problems. In fact they have done all they could to find ways for me to live in this world. I want to talk to everyone I know, those I don't, and anyone who thinks we are otherwise.

Being in a wheelchair does not mean not being able to travel. We don't have to hide away. Even having little to no helpful tools cannot stop our zest for life. Why hide us away? We have a spark for life most can never imagine. I am saying it now and always will: when life takes away so much it is when we find what truly matters. 

So look at me smiling and know I am no mistake. True. I don't like to have a wheelchair in my pictures. My cane is being held by someone off camera and my chair is hidden from view. The reason? I want to see the smile on my healthy spirit. When I look back on these days from a healthier viewpoint I want to see more than a wheelchair. My body is frail yet my racing heart remains strong. At least I hope so as I'm off to visit the cardiologist next week to find out for sure.

If any one ever needs to hear the encouragement to get out there and see the world despite their body's complaints, then tell me. I will speak for all of us when I say travel can be the best medicine. Look at the world around you from a new viewpoint. You will be amazed to find your spirit lifted in unimaginable ways.