Back from a Medically Needed Hiatus!

It's been months since I've last posted on here for one very very good reason: I've been working hard on a new treatment plan which is showing the first progress I've seen in years! The last time I wrote I had (I think) yet to visit Mayo Clinic. The particulars I will one day share (if tonight was not my night to make dinner I would try to today). 
 

All smiles with my niece and brother at the MC aquarium

Those are not what matter. What matters is finding a neurologist who has been instrumental in working with a cardiologist and internal medicine for my health. With their help I am taking treatment towards my chronic illness in the right direction. Instead of treating it with medication alone I was told 'the approach doesn't work because medication only takes care of 20% of the issue. You need the medication but there is so much more beyond that!' 

So for the past two months I have been doing physical therapy each week, working on reversing my body's deconditioning, seeing a new doctor who is detangling my medication soup (with help from endocrinology) and learning to manage my conditions with small changes to everyday tasks.

Also, I am writing freelance once again. More to come but now...on to making a Gluten Free Tuscan Chicken Penne.

Selfish is as Selfish Does

"I think your family is very selfish." My boyfriend's statement took me by surprise. We were on the phone while, almost daily, I sat at our condo while the family was out on an excursion. If it wasn't wheelchair accessible I still insisted they go. I would stay behind. 'It's fine. I don't want you to miss out.' I say.

Don't leave me behind in this crazy world . I can't run after you!

Negative statements like the one above are rare for my long time boyfriend. He typically is above such things because realistically in the scheme of life they do not matter. Selfish today is usually forgotten ten years down the line so why waste time on anger?

'They're not selfish..I just don't want them to miss out on doing (insert activity here) because I can't. It's not there fault I'm chronically ill. I don't want to stop them.' In my mind I always saw myself, until that moment, as the 'selfish' one. My body's chronic illness has demanded they give up so much. Surely my sickness was the height of selfishness.

Silence responded more than a thousand words could explain. When they finally returned I said good-bye and since then have been pondering the thought. Is it selfish to feel hurt when I watch them step off for a hike while I wait patiently in the car? To long for a beach walk instead of a long rest? I want so much for them to enjoy life yet I feel envy they can so easily do it. Being left alone while everyone enjoys their time hurts. A lot. Not many could understand it. Yet I smile and say 'it's okay' because even though they offer to stay behind, they want to be out there too. I can't deny them so I insist no one worry. Don't give up your chance. Leave me here. I don't mind. So they do without looking back. There are times when it is merely assumed I will be unable to go. 'You won't be able to physically handle this or that.' Then I agree (because I know it is the truth) and watch them leave.

I don't know if I am selfish. Are they selfish? Resentment comes so easily to us humans. I do not want to be the cause. To be slowed down by someone, kept from what you want to do...is it selfish not to want to be the person always left behind?

I Have Lead Poisoning.

Not until I began looking at my EDTA treatment side effects did it hit me...EDTA treatment is for lead poisoning.  My brain has its' on thoughts on the subject: "You are a baka! How long since you started treatments? And you just are realizing this? Idiot!"

Enjoying Shanghai without a lead poisoning care in the world.

Part of me wants to blame my slowness to acceptance on having had 2 TBI. Or I might just not have wanted to accept the idea. I had to when the pulmonologist wrote it loud and clear on my chart record. This ain't no joke! You have levels in the red. Keep up those I.V. treatments or face serious consequences! Alright. He didn't put it precisely in those words but I got the message.

The idea is surreal. Something out of those medical journals I used to read with such passion. Patient X is a female in their mid twenties undergoing EDTA treatments for four times the amount of lead deemed safe. (For the complete article pay $2.95. Pay Pal accepted). Well I hope I might be worth at least 4.95 for their troubles but I will stick to being realistic.

I will not lie. IV treatments on a weekly basis suck. Their effects are not pretty. I cannot hold a conversation without losing track of where I am going. Nor can I follow instructions or sew a straight line for two to three days afterward. Yet I find myself happy to see my neurological symptoms ever a bit better. I am no longer chasing down my utensils for a simple meal. The tremors are manageable. I did lose some feeling in my right hand but everything in life seems to have a cost for me. If I have to trade feeling for a steadier hand...then who am I to complain?

Besides, I have lead poisoning. I feel I need to remind myself of this fact. This is a reality now. I have been told my treatments have no end date. They could potentially last for years. Especially since no one knows where this mysterious lead came from. There are always ideas. People love to say, 'you were just in China!' Thank you. The trip was lovely but my lead poisoning took years not ten days to become a problem. Lead window paint? Haven't lived in a house old enough to have any. I also like to think I might have been smart enough to not go around eating paint chips for snacks. 

Do I have any advice for people with lead poisoning? Yes. Who are you and how did you get it? I almost feel like we need a facebook group: I've Got Lead Poisoning. How 'bout you? Although this would require me going on facebook which I hardly ever do. The point is: once again I remain ever the medical mystery. Only now a medical mystery + lead poisoning. Ah. Life is never boring when you are chronically ill.

7 Things This Chronically ill Life Has Taught Me

1. Sunshine brings out the best in people. Who wouldn't be smiling when there's a beautiful day to be enjoyed?

2. The weather makes no sense here. Sunny one day and cold rain the next.

3. After almost a lifetime living here I still get amazed at this ridiculous weather.

4. Being tired is a state of life right now.

5. I still got the socializing skills to bring out the best at a wedding.

6. There are legit couples who meet on eharmony and are happily married. Furthermore, there's more than one.

7. There's something about a bride which brings out their true beauty at a wedding.

A June Beginning

June first is almost over and it has been one strange day. There has been 'I think it's going to rain' clouded skies all day. Then pouring rain with sunlight mingling through. I love the rain yet I love rain with the sunshine even more. The two should not be able to exist simultaneously which makes it more amazing when they do.

Of course the rain is not always so picturesque. We took a trip to the store too find ourselves facing sheets of rain pouring down. This one guy ran out of the store with a plastic basket of food from the store. Two minutes later he came running back, got in the door, and promptly took a painful looking dive. He hopped up ('I'm okay!'), disappeared, and reappeared with his food in a grocery store bag. Then dashed out to his car again. Poor man. I don't know what the heck he was thinking.

Alas, I must be truthful about the events inside the store. We met a family friend whose daughter I was once friends with. I despise these type of meetings as it always ends up feeling like a comparison. Makes you feel a bit shit inside. I hate it. I know I don't have a 'future' like their daughter probably does. Hell, I live at home, can't drive, and spend more money on medications than most people do in a lifetime. I'm not exactly the daughter you write home about. I graduated pre-med (yay) and now live a very strange life. 

What a strange beginning to June. The weather which never fails to amaze me. And the meeting which never fails to bring me down. I don't know whether this indicates June is about to bring good or bad things to this chronically ill gal.

Treatment Pain? Hey ho! Beats Severe Itchiness!

The new I.V. treatment has been the best on side effects so far. I do get knocked out for a day or two with crippling exhaustion but it's a definite improvement over past experiences. Until this week's treatment when I developed a bad case of pain in my arm above/at the treatment site. At first I figured it was some weird 'hey. this needle pissed me off so I'm gonna let you know' memo from the body.

Give it a day or two and everything goes back to normal. Eh. Normal for me that is. Except the pain  has not decreased but increased. Almost like it's spreading deeper into the arm. I have to treat it with care as certain movements tend to increase the pain. Most people would think this is a terrible scenario. They suck at dealing with pain.

I, however, feel priviledged about it. I did say I would rather have pain then severe itchiness. The other treatment option was the one which left me scratching away like no tomorrow. I vowed to count my lucky stars (sounds like a knockoff cereal) if pain showed up over severe itchiness. No one wants to look like I did after that. I even took a picture just to show my doctor the reason why I was never ever doing anything with DMSO pills again.

So Hey ho! In keeping with the Surname Optimistic Way of Thinking: I have pain in my arm but hey ho! It's not severe itchiness all over me. Plus, the sun is shining and I finally get to see the long-time boyfriend after a very long week. Ah. Life could not be more beautiful pain or no pain.

Bahaha! O. The Childhood Thrift Store Joys That Make Chronically ill Life Amusing!

Who knew writing about something found in a local thrift store would be chosen to be shown to hundreds of visitors to the site I write at? Not me. Actually, I wrote it for a 'Quest' and also because books back in my day were so awesome. Especially ones about hospital things. Now that I've been there to many times myself I find it just hilarious to compare the truths of today versus the Curious George 'enhanced' happy version of yesteryear.

Like usual I was checking my account every several days when I discovered my featured work. Mainly from CONGRATULATIONS comments versus actually understanding I was front and center. Hey! No one ever claimed double concussions make you sharper. I feel justified in saying I was a bit slow to getting 'it.' 

Here's the site:  http://www.squidoo.com/ which features me all of today as LoTD. No idea what LoTD means? Look it up on there. If you're completely lost, here is paragraph one:

On a thrift store jaunt I was thrilled to discover a childhood favorite, Curious George Goes to the Hospital. No stranger to hospitals myself I had just been discussing how I loved this adventure. We immediately bought the book and attempted to read it to my exuberant niece. While she tottered around screeching (she’s only just discovered the joys of walking) my dad read the curious tale out loud. 

(continued at http://books.squidoo.com/curious-george-goes-to-the-hospital-best-medical-childhood-classic).

Clearly I was enjoying life way to much yesterday. Or should I say on Tuesday. Watching a 15 month old can do that to even the most miserable feeling of us. As for today: enjoy life. Go read a book. I'm off for a coffee with Bailey's (having booze with coffee makes it acceptable for early drinking so don't complain) to celebrate.

It's Been a Chronically ill While!

I wish I had an awesome reason for my absence. True. I definitely started a new treatment but that is hardly on the unusual side. According to my older brother answering "I'm going to the doctor this week" does not count as answer to 'What's new this week?' Dang. He really knows how to shoot me down. I can't claim to even have learned any new skills. The best I can say is I did do some Sculpey attempts and watched most (skipped a few) of R2 Code Geass.

The lack of excitement is not why I have not been writing though. I have had yet another rejection for my attempts at disability, had a battle over medical record nonsense, and this treatment kinda sucks. Not much to be excited over. Except today I woke up and the sun was shining for the second day in a row. It's unseasonably warm. People are already out boating on the lake. My sister got to Africa safely and my mother to Germany, also I totally got an awesome pattern for 49 cents at Goodwill.

Life can be good. Time I started getting back to that mindset. Also, I did get back into my size 00 skinnies (whoo hoo!). I just can't wear Jobst stockings with them or my poor legs complain. Ah. The difficulties of being a woman. You have to come to a compromise with your own pants.

It's easy to be off the record when you don' t need your own.

We are finally going to try the Mayo Clinic route. I have called the insurance and they are in network. All we need are the medical records. Easy right? Wrong! I am having a helluva time getting my own records. Did I mention they are mine?

 I have had to fill out forms to mail in because you cannot get records by fax, email, or phone. Evidently snail mail is still the rage despite everything going digital. Waste of postage is what I say. Along with postage fees comes the bill for every sheet of results. We are talking a dollar + per page. Utter shite.

Of course we tried the thrifty route. Send the records to your doctor and it is free. Only to realize they cannot give you the records because they have been sent from another medical provider. Again with the it is my medical record yet I cannot have it. If you can't have your own records then what can you have?

Sometimes living the chronically ill life is downright ridiculously frustrating in the most random of places. To try and counter all this snail mail stuff I am going to get my now-authorized (can only authorize via mail) records in person. With my i.d and directions to get there I think I will finally be getting out okay. That will take take care of one medical system's records. Whoo hoo! Only two more to go before my records become..well..mine.

Chronic illness Finds Grandmother Too

Being chronically ill has meant losing a lot of people and gaining more than I ever thought was needed. One of the most important being a lady who I have come to view as a grandmother. My own grandmother never knew who I was; much less sat and taught me how to sew or hugged me when I needed support. True. She was already well into the later stages of dementia by the time I was old enough to understand it. This explains away many a sadness but I am told of other events which make me ponder whether or not I would have found a grandmotherly love from her.

My younger sister claims I grow attached to people easily. Not necessarily true. When it comes to friendships I have dealt with far to many negative experiences to allow myself full trust in anyone. Being sick only taught me a great deal of painful lessons regarding so-called 'best friend' relationships. To this day, I still don't believe I will ever get over the events to declare someone else to have the role. I learned the hard way. For a while it was a bitter thing to admit but I have grown a great deal in understanding since then.

In life I always wished a bit for a grandmother. I have an Oma but she is a very big ocean away and visits are few and far between. There is a great deal of love but never the closeness I secretly wanted. Last night I attended a Mother-Daughter banquet and invited my 'Grandmother too.' I would not call the relationship we have a grandmother-granddaughter precisely. More like friends whose closeness grew out of a shared love for a hobby. We can confide in each other as I try not to sew my finger into the sewing machine again. She taught me a new way to make use of my shaky hands. In return, I fill our time with hopeful chatter about the future.

She will never be the typical sugar-cookie-making grandmother. I know she has her own children but never will have grandchildren. I'm happy to fill the role. When she said yes to the mother-daughter banquet I was thrilled. Blood may be what makes family but the heart is what truly counts. My heart sees her as family regardless of what genetics argue. Having a chronic illness brought emptiness to this life but a grandmother too helps fill the hole left behind.

Why You Need All That?

My family can only agree on one show to mutually watch on cable: House Hunters International. Mostly because we have all traveled so much it is fun to be like o..moving to Rome? Been there. Madrid? Yep. Berlin? Totally. Etc. There are many things I can stomach about the show but after a while there are points which almost make me cringe.

The worst is when people expect so much for so little because they are in another country. We have to laugh when people assume American housing sizes will happen when wanting to live in a European city center for a low budget. So what if the washer is in the kitchen? Be thrilled you have one! As for the 'small' fridge: take a hint for your health and try going with more fresh foods and less processed.

Why you need all that? Grammatically incorrect and all. Do we really need everything on our wish lists? Yes and no. Mostly no. Unless your wish lists consists mostly of medications necessary, like mine, then you absolutely should go with it. 

Maybe I'm petty or just really grouchy (it's been a very long day) because I feel downright annoyed at people who have a healthy body, job, and ability to travel but downright complain about all they need when in the end they don't really need it at all.  I want to tell them 1) if you don't increase your budge then you won't get what you want and 2) want to give me some of your health? I would to have your health! Heck. I will even through in the American-size fridge. Trust me. Being sick will make you wish you never complained in the first place.

First Day I.V. EDTA Goes Suprisingly Okay!

My doctor's treatment experiences can be classified (to me anyway) as: ineffective, short-term misery, wtf is this shite when will it go away, and I think it helped(?). He gave up on the reassurance of people feeling better/having a positive experience. My body seems to take these comments as a challenge to react in the worst ways possible. After one particularly brutal test which the nurse vowed to never inflict upon me again my disgruntled father asked, 'why am I paying good money to make you sick?' I used to try to explain the end result was to find ways to make me better but now prefer if we just do lunch instead.

Today was the first EDTA intraveneous infusion(?). Like with any of my good ole tests I had to sign a waiver. Not to alarm you just to warn you of all the possible negative things which could occur from this. Also, I thought the treatment was for the crazy amounts of lead in me. He listed it for tremors. Supposedly the high levels of lead could be the cause of them. I told the secretary I was all for the 'tremor treatment idea!' Way more encouraging sounding then decreasing lead levels.

Being myself I read through the possible side effects with amusement. 'Ah. Syncope. Have that one already. Tachycardia. That one too. Vertigo. That one as well! Etc. I laughed. "I've already got these so no worries!" Ha. Thus the Surname Positive Way of Thinking asserts itself as always. Hey ho! It's not Anaphylactic shock just a bunch of non-life threatening symptoms. Cheers!

I'm happy to report unlike certain other treatments *cough Meyer's Cocktail cough* the most painful part was the needle into the arm. I didn't feel better or worse immediately. My migraine still sucked but I did randomly develop the urge to vomit halfway home. I'm a master at controlling the puking until slightly more opportune times. I try to anyway. Be proud. I made it home. Downed prescription generic Zofram and shut my mouth tight until it passed. Took Excedrin and passed out until my mom came home to ask the ever obvious 'are you asleep? feeling okay?' She always asks if I'm asleep when I clearly am. Today's answer: "....I'm sleeping..." 

To recap: insurance does not pay for the treatment (lame), I did not feel any insane pain, suffer any someone-put-me-out-of-my-misery reactions, and did not vomit all over the car. Excellent progress if I do say so myself. On to a victory fruit smoothie and attempt at a new hobby!

Where Do We Go?

I've lost track of the times where I wonder 'where am I supposed to go from this place?' Stopping and starting are all a piece of this life. Sometimes we get stuck at the stops and others we fairly fly through. I might once have been flying my way through but lately I'm pretty much feeling about as active as a broken-down semi in a rest stop midway through the Dakotas.

When I was first learning to deal with the chronic illness I was positive this would all be quite the short stopping point. Yet here I remain. With myself, I think I can whether the storm. In a relationship? There has to be movement. We can't wait forever and yet, so much depends on moving forward in the right way. One person cannot support a relationship solely on their own. I had no idea they were even attempting to. Now I find out and wonder where we stopped and why we never kept on moving forward.

Where do we go? Can there still be a we? Should there be? The longer I stay here, the more questions I find myself wondering. Somehow in someway, I need to find a way to help move forward. To make what was once a single support into a strong companionship. Is it to late?

The Weather's Dreary but Today Life is Cheery

The title rhyme is downright awful but today I feel in to good a mood to attempt better. After all, who would not have a smile after finding a downright awesome gluten-free bakery? Not only did I get a fresh chocolate donut (with sprinkles!) but a loaf of Cinnamon Swirl bread I'm still munching on.

More importantly it's nice to spend time away from home. Not a single doctor's appointment this week is even better. Most importantly is spending time with an old friend (and a new baby). They make a cold rainy day feel warm and bright.

True. Original plans for a zoo day have fallen through. Animals are about as fond of the cold rain as we are. Best to stay under a thick blanket with a cozy cup of Strawberry Oolong Tea. I'm even going to attempt to follow the process of slow-cooking. If all goes well, the long-time boyfriend can stop feigning terror at the mention of me cooking. If not, I'm sure she will salvage the leftovers and make it delicious.

So for everyone out there...whether it's sunny or rainy...enjoy your day!

Inspiration Found at Starbucks (Cliche but not Quite)

Opting out of the grandma-grandbaby pool time I was dropped off to enjoy a solo hour all to myself at Starbucks. I haven't been to one in quite a while and was amazed at the crowd. Seemed like all the soccer moms had dragged along their kids (on Easter vacation) for their morning caffeine. Just getting to the counter felt like an absolute blow to all the chiropractor's latest adjustments. I was half-hanging onto the counter/gripping the cane for dear life/shifting my weight so the blood wouldn't pool down to my legs and pull me down with it.

After some very intense 'you will not faint...that was a little to close to fainting...wtf!..just give up on the Chai Tea Latte already! internal arguing I am proud to say I managed to order, get my drink, and find my way to a spot in the tiny place. How I got talking to the young man I found inspiring I am not precisely sure. I think it was on the topic of his Lucky Strike cigarettes. They are an unusual choice for a smoke and caught my eye.

The gist of our talk was this man was downright inspiring himself. At first I didn't understand what he mean when he said he was a resident of *****. I thought he meant a medical student but he immediately set me straight. "Outpatient for a severe severe case of OCD." He used to wash his hands sixty plus times a day, followed by wet wipe. He couldn't leave the house. Sometimes he had trouble just drinking a glass of water, never mind a simple task like making the bed. Yet, after forty days in ****** he was able to function and is finishing up graduate school for a master's in creative writing.

I was impressed. He even has a book coming out later this year. Talk about a lot of inspiration from a single person you meet over a Starbucks beverage. By the end of the hour we had both found something inspiring in each others lives. He shrugged off my amazement but I don't say things lightly. Being able to live with yourself when yourself has its own agenda takes strength most of us don't have. Talking to him reminded me of how little I have been interacting with the people in this world.

Perhaps I need to get out to Starbucks more. More like, I need to continue doing the work I should be doing. Maybe even stop making origami flowers by the many. Spring is here and although it's not supposed to be above the 40s for a while, it still is about time I left the winter doldrums behind.

Kagayaku sora no shijima ni wa

Are the words which fill my mind today. The lyrics spill forth from my monotone voice as I sit here. I wish life were different . Attending a baby' s first birthday makes me long for what could have been. I wish I were where I should be. The life I planned for.

Is it wrong to feel envy ? I feel it is not but I still do. Perhaps it is the booze talking or the hidden emotions speaking. In the 'silence of the shining sky ' lies what I wish. To be free...or to be whole. Is it the same? There are days I swear it is. Yet I go on with a smile. Makeup can make a sick exterior healthy but not free the soul.

Must Have Had a Childhood Taste For Lead Pencils

The heavy metal results are in! I wish this meant the top heavy metal bands or something cooler than the truth. Yep. The truth is those are my heavy metal urine test results.

Way way back, aka February, I think I described the testing. It can be summed up as miserable with a side of severe itchiness. This is when I first learned itchiness is a legit side effect and a severe case? I will take pain over it!

This morning has been very long so excuse that tangent. The results prior to taking horse-size DMSO were peachy for lead levels. After the DMSO 'cleaner' I must have sucked/possibly eaten a lead pencil or six in childhood. My lead level was over FOUR times the recommended amount.

I had been wondering why my bar graph mark was suddenly in the red post-pills. My mother looked concerned/why the heck is my daughter brimming with lead. I was trying to recall if I had eaten a lead pencil/other amusing scenarios. I did return to the reality without attempting to convey the humor I find in this. Actually in all my medical nonsense.

The big question is what to do about all this. Build ups of lead in the body can lead to very bad scenarios. You can't just take a pill and urinate it all out either. Firstly, I got to visit with my fave nurse while she poked me for a vial or three of blood. Gotta test for lead levels and other junk in there before proceeding.

There are several treatment ideas to lowering my lead levels. If I were not on a mobile device typing I might explain. Or not. The plan for me is the intravenous route, cheers to shooting down the dastardly DMSO pills, which puts EDTA directly into the bloodstream. Do this once a week to every other week and keep going and going. Some people do it for years as it is a gradual process to giving high levels of lead a sweet good bye.

All in all, I find my usual humor in this never ending medical saga. There's always more to be said but I am just getting off a lazy blog streak so this is today's end.

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.

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!

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.

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.

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.

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.

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!

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.

Chronic illness Teaches Love's in the Little Things

I've never been much of a big romantic. I don't want bouquets of flowers, gifts of jewelry, and romantic movies? You won't spot me at one. Being chronically ill has not changed that. Although I have amended the flower issue. If I'm in the hospital then a bouquet of flowers is acceptable otherwise go with a potted plant or go home.

The little things were always there. I just never appreciated them before. According to the long time boyfriend 'I've become much nicer' since getting sick. I wasn't a demanding girlfriend just one who was more absorbed in the future than in the now.

Being sick has taught me there is nothing more important then finding the joy in the now. The future? It will take care of itself. We can plan and plan but none of us know if we won't have a tomorrow. So why not appreciate what we have right now?

I appreciate the little things of the now. Like the way I open his freezer and find my favorite ice cream & gluten-free mac n cheese (none of which he eats himself). Or how he sweeps me off my feet when I have trouble getting up the stairs. The way he shrugs off my apologies for not feeling well enough to go anywhere. How he treats me the same regardless of whether I can walk or not. Most of all my chronic illness has taught me how it's the little things we do that add up to the greatest of loves.

Messy Space Recalls Chronically ill Creativities

When my body starts to lose the ability to do a certain hobby I say it's God's way of telling me to get a new one. This makes for a better outlook than crying over what cannot be changed. I look at my life and see there is a definite upgrade in creativity since the healthy days of before. Is it enough to make me be eternally glad of what happened? Definitely not! I would still love to be doing my previous plans but I survive, adjust my priorities, and go on with a smile.

Available on Etsy.com

I have decided I need to look at what I have gained since much of it happens to be all over the room. I'm talking about bouquets of Kawasaki roses, traditional tulips, daisies, variations on buttonhole flowers, etc. Also, a couple hundred origami cranes hang on strands over the closet doorway. I started because my hands shook to much to make jewelry and now...my hands just need to be doing something. Almost to reassure me they are still working better than the rest of me.

Then there is the 'I bought this embroidery ornament kit years ago at a thrift store' attempt. Not attempt. I did (after hours upon hours) manage to finish one embroidered little girl ornament. Even embroidered my niece's name on the skirt. Of  course I also had to go out on a creative limb which meant she did not exactly resemble the picture. Also, if you keep sewing, unsewing, resewing, you will eventually wear out the fabric of the face and spend long hours attempting to fix it properly. By the way, if you embroider..I now have mastered the Satin Stitch, Outline Stitch, Whip Stitch (one form), and French Knot.

I would love to say I am now a gourmet cook but that would be a ridiculous lie. I have not gained any talent in that area except to have memorized my favorite gluten-free brownie recipe and discovered diabetic frosting. My greatest kitchen accomplishment is not getting hot glue on the counters. 

Sewing. I was always able to do the basic sewing needs but decided what the hell, why not learn something new? Now I sew every week with a woman who is incredible at what she does. I've learned more once a week over several months than in a semester of sewing every day. I just wish she had been there when i first made a quilt. Learning online is no substitute for having an actual guide.

My writing has improved by way of sites like Squidoo, Blogger, and Wizzley. I still suck at certain aspects but get along comfortably. Mostly it's merely cathartic. The same with painting. If I hadn't gotten sick I wouldn't be painting random manga characters. I would still be attempting landscapes *shudder.* Those paintings found their way into origami vases.

Now I find myself with something new. This time I've taken my passion for using wire in my projects (no more trees) and combined it with something I do love, wine. More specifically wine glasses. I call it 'off the vine' creations. Perhaps they will take off somehow. Perhaps not. Right now I'm just living for the pure enjoyment of it.

Insanely Huge Grocery Stores Lead to Important Reminders!

Yesterday I experienced one of the latest (and evidently greatest) of food store advances. I have shopped the all-natural, all to expensive, and all to ordinary but nothing..nothing like this. The store was huge. Wall upon wall upon wall upon shelf upon shelf upon shelf of food. A whole aisle filled with nothing but different yogurt types.

Yet they lacked the usual wheelchair or electronic chair for us chronically ill slow lane participants. I had to resign myself to sitting on a bench with the cart in front of me and my father pushing it like a stroller. Whoever designed such things was clearly an idiot. 

My father had to ask an employee who had to consult a guide before steering us to the right aisle. As we started going in that far away direction I looked around me and felt a bit sad. When my father brought his friend from Nepal here, the man just stared in awe at the expanse of food. My father told me when he visited Nepal there was nothing near what we refer to as a 'grocery store' in his friend's area. 

I am very lucky to be able to go to a store and buy whatever I need without worrying if it will be gone tomorrow. Yes, I live with a miserable chronic illness but I have been given great gifts. Looking at all the food made me a bit ashamed of all I take for granted. I have been so lucky in life. 

A wonderful family who takes care of me, good friends, and a crazy optomistic view on life. Along with having a damn good doctor & cardiologist, there is to much to be thankful for. On days where I feel down (like I did today) I need those reminders. I need to remember how lucky I still am.

Give This Chronically ill Gal the Best Places to go in Beijing!

Beijing is our first stop and of course, we are doing the most popular sites to see. With an unusual twist we have a FREE DAY all on our own to explore the city. I have a travel must or two but love to hear from my readers. 

The night market is on my must list

I'm a laidback chronically ill gal so you can tell me where you've  been, where to go, or what other knowledge you feel I should know REGARDLESS of whether you have visited Beijing or not. Sometimes the best places to go are those people wish to see. 

Most of all, be honest with me about chronically ill conditions. Is it wheelchair friendly? Are the people willing to lend a hand? Our hotel is 5 Star so I'm not worried about getting help there. However, I'm not at all sure on transportation exactly. Remember I've traveled a great deal in Europe but not Asia so this is all going to be new to me.

Let me know. I've already begun planning my gluten-free diet and working out the necessary there. My suitcase weight..well...we shall see how that goes. Also, I'm pretty sure on what I hope to buy but if there is something you should not leave Beijing without...share it with me please.

For anyone who would like to know a bit about the travel experience of China's markets here is the link to a work of mine known as http://wizzley.com/a-brother-s-photo-journey-through-the-markets-of-china/. I loved his pictures so much I just had to share them.

~L

A Penny War Leaves a Chronically ill Gal Feeling Like a Millionaire!

It's amazing how a simple penny war can leave you feeling like a millionaire. Saturday was a huge morale boost to someone with little money in the bank. The whole tale started with a 1st birthday party which led to my little cousins entering the sty I call a room. I don't even sleep there often so them entering was a bit unusual in itself.

of course my lovely godchild spotted two pennies on the messy floor. My other cousin was thrilled. "My class is having a penny war to raise money for Africa." A very vague statement but I assured her it was fine in fact I had a basket overflowing with pennies.

Her face lit up at that. I was thrilled to get rid of a pile of useless change as I loathe carrying the stuff. When I said it was all hers she was glowing and talking a mile a minute. "I've looked through them but please just help me find the other currencies" as mixed in were euro cents and Canadian pennies.

Being able to give when you have barely anything to your name felt amazing. I am chronically so doing anything to help others cheers me up. I used to volunteer back in the healthy days. Now I was giving out change. O how life changes us.

She left the house with my painting, pennies galore, and a smile worth millions. I felt better for a moment there knowing what little I had would help her and whatever vague plans for Africa. I wish I could do more. I would pay my parent's, mortgage, buy them their first completely new car, and take those chronically ill on vacation. We need travel escape too!

7 Things Learned This Chronically ill Week

1. I'm terrible at the crying feeling pity part of having a chronic illness. Ten minutes later I have to laugh because crying is such a waste of the life we've been given. Tears are to much work. Smiling is far easier on me.

My niece was the best behaved kid there! Kudos to her!

2. I went to the portrait studio for those classic first birthday photos of my niece. Lord help us all if those children are the future. If I have a child they will not be running all over touching people's stuff and making others want to strangle them for misbehavior. Also, every husband should have to suffer through these. From the expressions on the poor mother's faces  I feel bad for the lecture those men will be getting for skipping out.


3. I find it hilarious my sister changed the label of Hot Sex to Hot Birthday Fun. Gotta keep it G-rated for the baby's first birthday.

Not a fan of this work. No more requests being taken.

4. I love to paint. I hate painting requests. This painting pissed me off to no end because I couldn't get the eyes right. Meh. Requests are done. I'm going back to painting whatever.


5. People think origami makes you 'so talented.' Not really. I just got bored and started making Kawasaki roses to pass the time. 

6. Watching Sex in the Ancient World (Egyptian Erotica) made me feel like an immature teenage boy. You're not supposed to laugh at such things even if the experts get excited to use the words 'engorged phallus.' Also, Playboy has nothing on some of those erotic scrolls.

7. Coppers is hilarious. I've learned more British insults from one episode then in my whole life. That being said, it's amazing how patient they are. American cops would just arrest the person for such behavior or whip out the pepper spray.

Thank You All For Your Messages...Unfortunately I Had No Idea They Existed

Tonight I came across quite the surprise. Meaning hundreds of messages from readers to me through Google hangouts since I first began this blog. Since they showed up as a name with the words 'invite' I thought it was like a Facebook idea. Suggestions/people asking you to be 'friends' or whatnot. If I had known these were actually messages from people I would have replied to you asap.*

Good thing I made this card in advance! Love that Origami!

*For those who sent the 'hello beautiful, hi, can i skype w/u etc' messages. Sorry. I don't reply to those. I would say I'm flattered but I'm not. I watch far to much ID Discovery to ever consider a relationship over the internet. Not to mention, I remain happily with the long-time boyfriend.







First off, I want to apologize to everyone who asked a question pertaining to my blog. I wanted to reply to all of you, which you might find insane after several months of no answer. Unfortunately, all of this froze my computer repeatedly which I took as a sign to go easy on the Google chat. I must apologize in particular to +Kawang Wong. You were kind enough to recommend me and I must have looked like a prat when I didn't reply. I apologize once again.

Secondly, I want to thank all y'all who wrote you like to read what I write. There are far to many of you to thank so I will just have to do an all-around THANK YOU. I will do my best to make some truce with my computer & Google hangouts & myself so I can let you know that. And thank you to +Thomas Bianco regarding your advice on Lyme disease which is always a tricky bastard to diagnose. 

Much Love (and a very early good morning)
~L

Zazzle. Creating Chronically ill Fun Since...Yesterday!

I am always looking at new things to fill my mind. Squidoo has been a bit frustrating as of late so I decided to branch out. Talk about a nightmare. Everything is so confusing when you have to figure out a whole new system! I can't complain though. The site I started on introduced me to the wonders of Zazzle. 

I knew Zazzle just as a module but not as a place where you can go creatively crazy. What a delight! You get to design things (which no one will most likely buy) but who cares? It's so much fun. I finally feel like all those weird things I've stored up in my mind get to play out. Or I just like writing things on shirts. Some of them are things I would totally wear, like 'Vaccines Save Lives.' As for a shirt like GLUTARD...well...that one was compliments of my brother. When I first got diagnosed with being gluten-free he found it rather hilarious.

So hilarious he combined retard with gluten making a GLUTARD. At first I was rather peeved about the whole thing, especially when it caught on with other people. Then I let go and laughed. It's okay to be a GLUTARD. In fact it is rather humorous in the lifetimes of other diagnosis names and medical mumbo jumbo.

If you are bored or simply huddling close to your computer for warmth (did I mention it's horribly cold here?!!) then visit my Zazzle store: http://www.zazzle.com/travelluv.