Shaky Cane Girl Threads a Needle Today!

 Yesterday I was afraid this week's sewing time was going to have to be cancelled due to a very bad case of the 'shakes.' Today I woke up (after a mere 3 hrs of sleep) to find my hands steadier than they have been in quite a while. I was exhausted but absolutely thrilled. For the first time in months putting in my contacts was a first-try-only-needed process. Which made putting on mascara a breeze because I could gauge the distance properly. The other day I mascarared my eyeball, which hurt really really bad, because without my glasses my vision is terrible and my shakiness only confuses my brain.

The most wonderful part of the day came when I was replacing my red thread with white for attaching lace to the sleeve hem. My sewing companion threaded the machine but I insisted on threading the needle myself. I needed multiple tries, trimmed the thread repeatedly, and did every trick I could think of to help me. The result was success! True. I did waste a bit of time threading the damn thing but knowing my hands could do it was well worth my time.

In celebration of my success my father took me out for lunch. Which was later followed by me sleeping a way a great deal of the afternoon. Mentally, I feel it twas a very successful day. Physically...definitely not my greatest. O well. It takes the bad days to appreciate the good ones :)

Positive Thought of the Day: Learning something new will make your day a little brighter and your brain a few neurons smarter...

Medical Hope Found in a Thrift Store Checkout Line?

Today has to be the strangest thrift store experience I have ever had. For the record, I love 'thrifting' and getting to do so is always a thrill for me. I would not say I collect 'junk' per say but I do have a passion for the occasional oddity. My mother does not share the same curiosity over 'what will I find today.' I can not remember a single occasion where she expressed even the slightest desire to visit anything remotely resembling a secondhand shop.

So I was astonished when she appeared with my niece (my niece is always here on Tuesdays) in her arms and enthusiasm in her voice about visiting the nearest thrift store. After some convincing of my shaky limbs I agreed to not only come with; I even put effort into my appearance. 

Of course this all went to rot when we got in the store. Normally I just push a cart like a walker and hope for the best. Today was the case of the traveling 'shakes.' Trying to focus on the cart with my hands meant my legs started shaking. The room started spinning and I needed a wheelchair asap. I have spent a great deal of time in my wheelchairs. Thus making me a pro at shopping in them. On days like today I do best in a wheelchair over attempting to safely move with a cane. 

By the time we had reunited my niece was letting us 'know' she was done for the day. They got in the checkout line. I went to the book section to browse for childhood gems. Coming across one I wheeled myself over to the unheard of long line and asked the man to, 'please get my mother.' I had no way of knowing he was somebody who might be able to help me.

What happened in the course of all their conversation is lost to me. I am told he asked very politely, 'may I ask what is wrong with your daughter?' and she expressed no one really knew. By the time I actually joined her checking out he said, 'I have a book for you.' Evidently he had told my mother about his work. He eventually asked if he could give her the book on it as it could be of help for me.

Imagine my surprise to find out the man in the ratty old sweatshirt buying a second-hand painting was actually a chiropractor with over three decades of experience. Not only that but also the author of a book on inner healing which has led him to being a health & wellness speaker. He is semi-retired but gave us a contact card for the practice he handed over to his successor. 

Looking at my 'tremors' (I call them shakes) he believes the problem to be neurological. "Have you had any trauma?" We informed him while parting ways in the parting lot I had been in a roll-over crash which required the jaws of life to remove me only a few months before my health fell apart. He was almost thrilled to hear this. To him this would explain so very much about what happened and where it went wrong. 

The reactions as we drove off were mixed. My mother, as always, sincerely hopeful at finding an answer to all my health issues. My niece, a bit cranky from the long day. As for myself, I opened the book and started to read. After all, if it can cure me then why not give it a shot?

Heartburn. It's Cooler in the Commercials.

According to all my knowledge of commercials and heartburn there is a serious cause-effect relationship. Typically it goes like so: person indulges in this or that, wicked heartburn appears, either personal moment of heartburn relief realization ensues or minor admonishment from fellow actors on the right heartburn medications to take. The end result: happy faces all around.

It's not medically accurate but definitely how my heartburn is feeling

I know it is blatantly obvious commercials do not equate reality but I used to think when it came to the heartburn  scenario they really did. Then again I also never ever thought I would be having horrible heartburn at the age of 24. More confusing than that is the fact I have no idea what caused this ragingly miserable heartburn. If this were a commercial I would be able to say, 'dang, I shouldn't have eaten _____ now I have terrible heartburn again.' Instead I am going, 'wtf did I eat so I will know to never ever eat it again!'

I like to think I would be in the 'personal moment of realization' commercial category but honestly, I am nearly positive I would get stuck with having people point out the many reasons why I was using sub-standard heartburn relief. Which, for the record, I am using the non-generic, highly-recommended, non-prescription option which is failing quite as well as its cheaper counterparts.

Well, talking about the raging heartburn will not make it go away. Nor will it make my scrawny body healthy again. So instead I must 'pull' out the Surname Positive Thinking Policy. Hey ho! Not being able to sleep because of horrible heart burn is the perfect reason for making some delicious sugar-free diabetic recommended dessert.

7 Things This Chronically ill Week Has Taught Me

1. When it comes to removing fake lashes, patience is definitely a virtue. Being impatient and ripping them off will result in loss of lashes.

2. If a taco bell closes at midnight but does not turn off the lights or say 'closed' on the drive through there will be people lining up for their late-night drinking 'delicacies.' Sadly, we were one of those people last night.

3. Asking for my help on a nursing test is pointless. What nurses actually do for patients (I've been a patient far to often) and what the testing booklet says are far to different. So what if my answers are the reality? Ain't nobody got time for that!

4. Gluten-free food is dang expensive. Gluten-free, dairy-free food is just plain weird and more expensive. I shall stick with the solo gluten-free and use a lactaid. Some things, like Mac & Chz, just require dairy to be logical.

5. I wish..

 

6. YouTube has some serious gems. Like this parody of Taken:

7. Being made a moderator is awesome (btw Thank you +Julia Chi) explaining what precisely a moderator does to non-Googleplus people is actually a bit hilarious. Who knew there were so many misconceptions about it?

A Bundle of Nerves for Tomorrow

I am feeling very nervous about tomorrow. Partly because my parents have been reminding me about tomorrow ever since they made this appointment and partly because I am not exactly sure what one is supposed to do. I am meet my lawyer(?) to help me get approved for benefits. My father keeps asking 'do you have the paperwork?' If that means a printout of the never-ending questionnaire I filled out then yes I do. If not? Then I have no idea what he means.

I have come to realize doing forms online is easier and harder all at the same time. Easier because you can type things up and not have to waste stamps when sending them back. Harder because most of the time no one else in your family does things via online forms and gets all uptight about this handy dandy new way. Then I get stressed out because I cannot give them the 'stuff' because you do all of that online. It goes on and on until I just keel over from confusion.

All of this could not be at a worse time. My fatigue level is at an all time high. I look more dead than alive with my body seeming to agree. All I want to do is conk out somewhere and hope I wake up healthy. Talking about my health requires such energy. I just do not have it at the moment.

The most I can hope for is not to do anything stupid tomorrow. Stupid meaning I fall asleep while discussing my case or have a serious case of the shakes and spill all over myself. I suppose spilling hot coffee on myself would be one way to keep me awake but it sounds painful and would be a complete waste of my father's secretary's coffee skill.

I think the best order of business is to 'retire' (I love that it reminds me of old-fashioned movies) for the night. Either things will work out or won't. At least the weather will be in the below thirties. Perfect temperature for my crazy inner thermostat.

7 Things I've Learned This Chronically ill Week

1.  According to LockUp Raw, you can strike up a relationship, get engaged, married, and do it all while serving your prison sentence. I don't know whether to be impressed, scared, or just weirded out by this information.

2. Acuvue Moist 1-Day Contacts have a serious love-hate relationship with me. I love how my eyes no longer dry up when I wear them. I hate how they have more defects per contact box then any brand I have ever known. I really really hate how all of the defective ones are for my left eye. Acuvue, what am I supposed to do with all these one day for only my right eye? I love your contacts but please look into your quality control for prescription 5.25.

3. Wearing my hair down today reminds me of one very important thing: Locks of Love is long overdue  for my long locks.

4. Today we went to a pumpkin patch. We got lost on the way there, lost for over an hour on the way back, and didn't buy a single pumpkin.

5. I am somewhere between 100 to 150 paper cranes on my journey to make 1000 and have my wish come true.

6. Using Chebe bread mix to make a pizza results in massive air bubbles, weird texture, and meh taste. Wait 24 hours, eat cold from the fridge, and marvel at how delicious it now tastes.

7. Today everyone was wearing hats, gloves, thick coats, and shivering. I did not even bother with long sleeves much less any type of outerwear and thought it was quite balmy out. Judging by the odd looks from the people around me my Dysautonomia-Temperature-Regulator is way off this week.

If this chronically ill girl has talent then so do you! So get out and use it!

One of the stupidest things I hear people say is, "I'm not talented. I don't have a single talent." Well that is clearly nonsense. Everyone has at least one talent. You just need to listen to this chronically ill blog and find it. Why am I bringing up talent today? The answer is simple. I am feeling very talented this week.*

Sanka's feeling very Olympic!

*This completely makes me think of Cool Runnings where Sanka says he is feeling very olympic today to these bobsledders who don't seem to know English. If you have not seen Cool Runnings then you really really need to. It's to classic to pass up!

I am not going crazy. There is a legitimate reason for me to be feeling talented. Shaky hands and all. If you read my blog then you know I wrote an Amazon Product Review on the Watercolors Which Brought Out My Passion (Click Here to Read It). The reason I did is because all Rocketsquids and Giant Squids get to participate in a ten-day (or was it 14?) challenge where the top 5 reviews are chosen each day. Each review winner receives  $100 for the next PayPal pay day. I entered and of course checked the next day. Being myself I read the wrong thing and thought, "Hey ho! At least I got in practice on the new format!" Then got a comment congratulating me on my win which was followed by, "Hey ho! Acting like an idiot and thinking I had lost makes winning so much better!"

You would think I would have told everyone but it took me a day to bring the grand total of 'yay I have done something kinda successful' news to two non-online people. The talented feeling is best kept to myself. Next week I might feel like my only talent is not being sad over this chronic illness. The whole point of the matter is: we may not feel talented every day but all of us do have a talent. Sometimes our talent lies in being able to make others laugh or painting or teaching or cleaning the garbage can like none other.

Sometimes appreciating other people's talents helps you jump start finding your own. Hence why Googleplus communities are awesome. There are so many talented people out there waiting to inspire you. I know because I see talent on here every day. And if you are looking for a talent anyone with hands can do then of course you can check out my latest Amazon Product Review: Origami Gave Life to My Shaky Hands. You never know what you will find in life if you only start looking for it!

Life in the Chronically ill Slow Lane: Chapter 1

 I had a weird childhood. When I say weird, I mean weird. My earliest memories are of ladies with lost passports, visits to foreign places which I could not begin to appreciate, and forever the feeling of not understanding where I belonged.Most kids feel lucky to have been to Disney World. I was earning Junior Ranger Badges at States parks across the U.S and spending weeks at a time in Europe. I had no idea how strange this was until I started the third grade with a question, "What did you do this summer?" That was easy. "I was in Germany." Every one, teacher included, looked at me like I had just turned into a turnip. The teacher pulled down a map so everyone could see where I had been. She looked at me in awe. I was completely stunned. 

No one had ever explained other children did not just pop in and out of Europe every few years. I felt like a freak. How was I supposed to know this was strange?! I spent most of my time around people six or seven times my own age. They understood. I was a child with experiences most adults would never have. For the first time in my life I finally understood. I was different and now all my peers knew it.

My parents raised all of us around adults. We knew how to talk with them. Kids our own age? The only one who ever really managed to integrate into their world was my older sister. My brother, little sister, and I all dealt with reality in our own ways. Sometimes it was healthy, sometimes it was downright stupidity but most of all it was the feeling of living a life those around us had yet to experience. 

There were a lot of lonely years. At one point I even transferred schools thinking anything would help. Note to self: people are the same no matter where you go. I transferred into a place which would only make me more confused. High school was some of the worst years of my life. I was not the person I am today. If anything I was at best, a lost little girl, at the worst, a juvenile delinquent in the making. My brother got out. He went to study in an entirely different country. Perhaps this would have helped. I doubt it. No matter where you go you have to want to live. Life is a gift. I wanted to return it.

People find me inspiring. If they had seen the teenager I once was they might not feel that way. A part of me insists I tell the world: Everything I went through has made me the strong chronically ill person I am today! In the end, it was worth it! Most people who say such things are full of crap. I will not apologize for saying so. I was a coward. People who know the life I lived before would hug me and say, "you have been through so much! I admire how strong you are. As pre-chronically ill doctor said, "you are one of those rare patient success stores." Eh, if I had been successful back in the day I would not be writing this chapter of my life today.

Does saying so make me a bitter person? I think not. If honesty is the best policy then I fully intend on sticking with it. When I first started this book I began with the good times. The happy person who took years and lots of courage to appear. I did not want to share the person I used to be. After all, I lead a happy chronically ill life. Who wants to hear about the sad person of yesteryears? For several months I even stopped writing. I never wanted to be chronically ill nor write a book about it! Only after thousands of people had read my work did I get hit a horrid realization. I needed to write about this. Not for my sake but for every one who has lived through, seen someone live through, or think getting hit with the worst you can imagine means life has to end. 

I prayed and prayed about why all this had to happen to me. One day I got my answer, 'God wanted me to write a book on this.' I said, 'Hell no! Look. I am religious and all but thinking God wants me to write about this shit is fucking crazy.' Yes, I did swear. I complained. I got angry. Then I got over myself and started to write. Only to hit a major writer's block where I knew I had to be honest. Fuck. I don't even like to think about the old days. How can they possibly matter to the happiness I now feel? Once again I got my answer. Get over yourself and get writing. Okay, Okay but I don't need to like it!

Having let myself be honest I can start where I believe what I call 'life' truly began. Not on the day I became chronically ill but several years before. The time where happiness began and the desire to keep on living each day to the fullest actually started. There is no 'on this day of this year I woke up, loved life, and experienced the bliss of true happiness.' I wish there was. It would make writing a lot easier to have a one sentence chapter stated: 'this is where I let go of the past, enjoyed life, and began to be the happy, now chronically ill, person today.' End of chapter, move on to the next one.

Hey Ho! This Harry Potter Fan Made My Day!

Sometimes I like to type in random things on Google images and find amusement in the results. I have a weakness for science humor of all types, demotivational posters, and movie moments skewed with wit. Then I came upon a pure gem. One which combined the idea of one Harry Potter fan and the ingenuity of a certain coffee company's employees.

Bloody Brilliant!

The Harry Potter fan gave their name as Lord Voldemort. Now this is amusing in itself. 'Vanilla frappuchino for Lord Voldemort!' is not something one hears every day. I would have laughed had I been there. The best part is knowing the employees were also fans. Instead of giving the eye-roll (well they might have I was not there) they returned the drink with 'He Who Shall Not Be Named.'* I would have burst out laughing. Seeing the picture did actually make me laugh out loud. I did a legitimate lol.

*One googleplus member commented the actual name to be 'He Who Must Not be Named.' As someone who has read all the books multiple times, minus the 5th, I obviously know the proper name. The point is not the phrasing but the beauty of the moment.

Whoever you are who made this laughter possible I want to thank you! Yesterday was pure misery. So miserable I spent three times attempting a post and could not succeed. Your 'work' gave me the energy to write once again. I even had a moment of inspiration to attempt doing the 'Lord Voldemort' order myself and see what happened. Then I realized how unlikely it is I will get anywhere near a coffee company any time soon. So I will have to leave all of that up to my readers. Perhaps they can give a unique name for once while ordering. Sometimes you need to step out of the day to day routine and try something new. Just consider it a part of the Surname Way of Positive Thinking. Hey ho!

Painting with a Chronically ill Passion

Yesterday I got an email asking all Giant Squids to create a Unique Amazon Product Lens. I knew I had one product I had to share, the watercolor paints which brought a passion to my first horrible weeks of my chronic illness. When I first got sick I could not do much more than lay in bed and hope to wake up from this nightmare. I could not write nor read. My brain had trouble with words all close together. Computer screens wreaked havoc on my eyes. I felt to mentally numb to even think about creating a piece of jewelry. So I turned to the one class I still had the capability to finish, watercolor.

My Latest Watercolor. Still in progress...

Painting with watercolor started as an immense struggle. I wanted to paint what my family considered art. I tried. The results were unsuccessful and miserable. Then I stopped thinking about what I should paint. I looked at the beautiful colors. Colors like Alizarin Crimson and Green veridian. For the first time I focused on them. Finding the beauty in different mixtures and shades. Getting to know how to layer on the paint and let it flow from my brush. I stopped forcing myself to paint what I saw. Instead I began to paint what I wanted to see. Bold expressive eyes, hair in fanciful colors, and characters who held an unnatural beauty. Color became my muse. Watercolor grew into a passion. The results were a personal escape from the painful realities of every sick moment. Through watercolor I could live in a completely new way.

I would love to share my lens (aka article) on the Grumbacher Academy Watercolor Paints which have made such a difference in my creativity. Click on the link here: The Watercolor Paints Which Brought Out My Passion and read about it. You can also see several of my watercolor paintings.


O. And if you enjoy my blog writing here then look at some of my other works on the site. I have written about everything from 'Living a Happy Chronically ill Life' to 'the Funniest Skymall Gifts' to rough draft excerpts from my in-progress book. Merely click on my picture on the site and you will find all of my work ready for your perusal.

Halloween Happiness for this Chronically ill Gal!

I love Halloween. For the costumes, the excitement, and the freedom to be oneself in a totally different way. Having a friend who is downright ecstatic about the holiday is also a definite plus. Just thinking about the fun I know we will have makes a day like today a whole lot better. Plus, I get to actually show off my costume from last year. I spent last Halloween visiting a friend in another state who does not quite share the 'enthusiasm' for the holiday. We went to a private party but not out for the night. Going out on Halloween is one of the reasons why it is so much fun. I love seeing the costumes! Who would not have fun when talking with a slightly tipsy person dressed up as a Christmas tree complete with lit Christmas lights! Now that was a costume worthy of remembering.

Saluting some Halloween Happiness!

Days like today remind me of why having a holiday of fun is so important. I will not go into details but I finally* called my doctor back about my follow-up ultrasound results. The technician at the actual appointment had thought the cyst causing me so much pain was gone.

 *I've avoided three calls from the doctor and reluctantly called back. Mostly because I loathe voicemails. They keep leaving them until you give in and call back.

When I called and spoke with my doctor's nurse the news was not quite so wonderful. My cyst has shrunk a lot but still there. I absolutely hate news like this. On the one hand it is a relief to know the cyst no longer has the chance to twist and cut off blood supply to several important organs. On the other hand it is a major disappointment knowing it has not disappeared completely. I also do not like hearing, "if you have any, any issues then you need to make an appointment with the doctor pronto." Knowing it is still something to look out for always pisses me off. If I were not shaking so badly today I would have chucked my crappy cell phone at the wall.

1 of 2 pics from last Halloween of me

Alas, my crappy cell phone could care less about my ire. So I did the adult thing (kinda) and gave it a furious glare before leaving it somewhere out of sight. Sometimes it really makes a difference for me to literally do the 'out of sight out of mind.' Besides I have more important things to think of. Well, things which are more fun. Like editing my costume here and there, figuring out if I can still walk in my 7-inch Halloween heels, and doing something about my poor wig. Not to mention finding both my katanas. If you were wondering, I am going as a samurai geisha. According to my brother wearing the katanas on the back is not historically accurate. I pointed out it looks so much cooler. For those wondering, my holder is actually a complex fabric thing which looks a bit like Hitsugaya's from Bleach.

Dressed up all adorable for trick or treating

I also took a look back at a few of my costumes from years past. Like the $1 Belle dress I wore to go trick-or-treating at age twenty. My roommate and I wanted to see if we go still go trick-or-treating in our twenties.Both of us are less than 5'2" tall and were shocked at how much size plays a role. Instead of people asking if we were 'to old' they complimented our costumes, gave us candy without complaint, and told us to 'be safe.' We were in the ritziest neighborhood around, I know because we planned it that way, and they were warning us about 'stranger danger.' I have never heard so many 'you look so cute!,' 'are you barbie?,' or 'I love your costumes' before. In two hours we had an astonishing amount of king-size candy bars, chocolate galore, and knicknacks. She went off to the bar and I celebrated with the long-time boyfriend. All in all, it was a crazy successful night.

Love from the last night

My favorite Halloween was actually the very night before I became chronically ill. I went out to the bars for the first time as a Sailor pin-up girl. My costume including shoes came to a total of seven dollars. I danced, got drinks bought for me, and discovered trying to repel men by talking about the wonders of PCR, impingement, and transgenic fish is a total failure. For my friend, the science talk sends them running. I do it and get 'I think it's really hot you are so smart. Let me buy you another drink.' I cannot count how many times I have tried the 'I'm going to bore you to death with stuff which only fascinates people who can't go a day without biology' approach and had it fail. You would think talking about such things as mapping out the sequence of the dusky gene mutation in fruit flies would send a man running. Who knew me talking about my passion for biology could be so attractive?

Positive Thought of the Day: Thank you to +Julia Chi . Your courage and humor truly brightened today. I only wish I could send you all our snow this winter....

7 Things This Chronically ill Week Has Taught Me

1. When people complain about food being expired I assure them I eat expired food* all the time and have yet to die. I realized today this argument, coming from a chronically ill person, is not very reassuring.  

I love this view from my kitchen window. It cheers me up every time I see it.

*Typically this means expired box stuff but I also will use expired eggs so long as they pass the 'float test. Hey now! GF food is expensive. So unless people would like to fund my diet I will keep eating the food I rediscover months later expired in my cupboard.

2. No one else sees the wonderful beauty of experiencing a harvest fest. I wish they did. As it is, I am not medically allowed to drive and have missed every single one this month. Dang it! I just want to drink hot apple cider, preferably with an alcoholic beverage, and do my own pumpkin picking. Is life really to difficult to do that?

3. There is no universal pain relief medication. You just have to try this and that and hope it all works out in the end.

4. Americans on House Hunters International have some of the weirdest hang-ups. So what if the washer/dryer is in the bathroom? Or in the kitchen? Sheesh. Just be glad you have the option of having one. Personally I like the idea of having it in the bathroom. My Oma & Opa in Germany have theirs in the bathroom. It works out quite well.

5. LOL has always been my pet peeve in texts. Now I find it to be on comments on GooglePlus. LOL means laugh out loud. Are you actually Laughing out Loud at something? No? Then stop saying LOL. Laughter is a beautiful and wonderful thing. Don't take it so lightly!

6. Even in a pony tail my hair is still to ridiculously long. I need to get a haircut so I can donate it to Locks of Love and have my hair do some good.

7. Raito's Kira laugh sounds positively odd in French.

Lord. If I cannot Run then let me Fly

There is nothing quite like driving home on a clear fall night with the windows down and the scent of fall in the air. I always end up with an arm out the window at one point and my eyes glued to the stars above.* Sometimes I look for the constellations but mostly I just admire the sight. Who knew so much beauty existed outside a car window?

I loved Sailing. It was like flying over the water...

*I am not medically allowed to drive. If I were, my eyes would be glued to the road, with the windows up, and driving my usual paranoid-over-speeding-ticket-under-the-speed-limit pace.

Obviously I was thinking about the question tonight as my long-time boyfriend took me home. He finds my newly discovered symptom of not being able to feel the cold a misery for driving. I secretly love being able to have the windows open on a cold fall night. The cold air does not bother me. I get weird looks from the drivers passing by us but I could truly care less. Even if I could feel the cold I would happily suffer through it to be closer to the beauty of my favorite season.

Being alive, being able to feel the wind, taste the scent of fall in the air, and get lost in the stars always reminds me of how lucky I am. I am not lucky in the usual way. Unlike my marathon running little sister I do not have the ability to run and run and run until I can accomplish my goals. Just remembering the last time I could ever really run would take far to long to figure out. No. I cannot run nor can I be like my strong older brother nor am I a mother like my older sister. 

So if I am only myself then let me forget about trying to run like everyone else. Let me fly instead. Help me to let go of all the past regrets and move off into the future. I am lucky. Lucky to understand the regrets of today and yesterday should not stop me from loving the future of tomorrow. If I had not become 'sick' I would never have been able to see life the way I do now. I would not understand what it means to 'fly.' Truthfully, I will never completely understand but I do know this: running was like seeing life strictly from one perspective. Flying is like being able to see everything from a hundred perspectives. You cannot understand it until you try it.

Looking to start? My advice: Roll down the windows, check out the stars, breath in the air because it's so good to be alive, and let yourself enjoy the moment. It's good to be alive so why not start living?

Pain free at the moment and loving it!

For those who read my blog on a regular basis you may have noticed there has not been the usual daily updates. I would love to give a fabulous reason like 'on an internet free vacation in Antigua,' 'out at a cosplay convention,' or 'to busy at my new job.' Sorry. The real reason is nothing exciting. I was in horrible pain. The type of pain which took a lot of pain-killers, icy-hot, and tears to get through. 

The title says I am pain-free at the moment which is true but primarily because I have been taking my after-concussion stuff. I have found it is the only medication capable of helping me function. Although it does intensify the tendencies of 'coma girlfriend.' Meaning I have not seen the long-time boyfriend in almost a week. Which reminds me, I need to give him the daily 'I'm still alive' text. 

I should be complaining, hating life, and being angry for such a pain filled week. Being angry and hating requires far to much energy for this chronically ill gal. Instead I have been dealing with the mental aspects of this crap by my new-found Surname positive thinking. Hey ho! Having half of me hurt makes me appreciate the other half of me all the more! Especially the parts which have little to no feeling. Can't feel my foot? Perfect! No need to worry about feeling pain there! 


Ah. I could never be a pessimist. The power of Surname positive thinking is simply to much fun. Plus, thinking about Peter & Judith Surname is funny all on its own. They have made positive thinking an exercise in creativity. One which more people should try. You would be amazed at how uplifting life can be if you just laugh a little more and worry a little less.

Positive Thought of the Day: Hey ho! Just thinking about the humor in life makes each day a little less painful to get through!

LITERALLY. A Pain in the Neck

My unique, some people would say odd, form of thinking about my health has led to a new guessing game. I call it, "Where will it hurt tomorrow?" Last night I had a major migraine so I thought I would wake up with head killing me. I gave myself +10 points for being right the next morning. So I took my near-daily migraine help and then then realized...ah..my chest is aching. If someone were scoring me they would have had to deduct points on me forgetting how one pain distracts from another. 

I figured hey ho! At least the pain is only mildly uncomfortable. This is a most definite improvement. One which is obviously worthy of a decent breakfast and hot shower. Somewhere between turning on the water and reaching in the linen closet I felt something odd. Almost like something had snapped in the neck area and released a cascade of pain. Lots. of. Pain. 

"So THIS is what a pain in the neck feels like...a pain in the neck. Hey dog*. I've got a pain in the neck. A literal pain in the neck!" He didn't look up from claiming my sunny spot on the bed. I think he has gotten to the point in our relationship where he realizes most of what his owner says is nonsense. Either that or I am only truly exciting when I have food or a treat for him.

I thought this new 'pain in the neck' might just loosen up and disappear via hot shower. I was very very wrong. The pain got worse so even moving my neck in the slightly wrong direction was horrible. Rolling over in bed was like getting hit hard at the base of my neck. I have a very high tolerance of pain but this pain was enough to get me ready to bring out the prescription painkillers. Except I had already maxed out my daily Excedrin and was not entirely sure muscle relaxers or prescription painkillers would not clash with them in my system.

Instead of being upset over this difficulty I got out the genius invention of Icy-Hot, roll-on style. I am normally a huge fan simply because roll-on style makes it easy to get on and icy-hot just does wonders. I applied. No relief. My father came home and re-applied when it hurt to much to move my neck properly. Still no relief. I got a weird pain cream from my mother when she came home. There's still no relief.

After much consideration I have discovered there to be a select few positions which do not cause me pain. I have decided to 'remain' in one of those positions after a distrastrous attempt to eat dinner. Even now the only part of me doing any moving are my hands typing this. The rest of me is doing a weird frozen state to try and keep the pain centered.

I keep trying to move around every ten minutes or so. Whether this is because I think it will help my neck or keep me from getting permanently attached to my bed is anyone's guess. I will tell you this experience has taught me I take my neck for granted. All this time I never considered how wonderful it feels when your neck is completely pain-free. After my concussion I did have neck pain but there were so many other matters I put it very low on life's priorities. I never thought about how great it was when my neck no longer hurt. Now I am thinking about it. I should have gone out for the night to celebrate or at least had some GF cake or something.

Having such literal pain in the neck is actually making me realize how much of a 'pain in the neck' I am when it comes to appreciating what I have on a daily basis. There are people who would point out, 'you don't have much on a daily basis to be thankful for. You've got neuropathy in your hands  & feet, shakiness, migraines, pain in your chest etc.' Well. You are wrong. My elbows don't hurt nor are they numb or tingling. There you go: I'm thankful for healthy elbows. I even smiled a bit at the thought.

Right now I'm getting worn out thinking about tomorrow's treatments and the dog is cuddled up beside me snoring away. Even though it is hours earlier than I usually drift off to sleep I think I have to call it a night before I end up posting something accidentally again.


Positive Thought of the Day: The time to appreciate what you have is today. Don't wait because it may not be there tomorrow.

7 Things This Chronically ill Week Has Taught Me

1. National Geographic remains amazing for discovering fish which actually have elbows. Yes. Elbows.

2. Never underestimate the power of anime.

3. Having costochondritis hurts. Starting to feel pain reminiscent of my previous pneumomediastinum hurts. Positive thinking: Hey ho!One hurts, the other hurts, but never at the same time! 

4. The only Halloween 'horror' movie which does not scare me is Sleepy Hollow. The reason? It's an awesome Tim Burton film. I can't be scared of a film made by the filmmaker I revere!

5. I know it's cold. My body senses the cold. However, I do not feel the cold. The whole scenario is just weird.

6. My father enjoys the History channel. I prefer the medical one. Somehow it all works out in the end. Until my little sister comes home. Then everything goes out the orderly window.

7. I will not regret the past but I will use what I have learned to make sure there is a better future waiting.

Positive Thought of the Day: Fall is the season where changing colors make anything seem possible. So reach for the impossible this fall.

Konnichiwa! Chronically ill Dreams of Traveling to Japan!

I have my chronic illness to thank for introducing me to the beauty of the Japanese language and the wonders of Japan. One Japanese film led to me being interested then to studying the language, delving into learning about the country like none other, and finally giving me a dream to keep on struggling for.

Tokyo's Shinjuku District at Night

I want to walk (or roll in my wheelchair) through the Shinjuku district of Tokyo at night and be awestruck by its lights. To visit Harajuku on a Sunday dressed up in cosplay with other cosplayers. Visit Meiji Jingu,one of Tokyo's major shrines, and see it firsthand. I even want to do karaoke while laughing at how terrible my performance is.

People hanging their wishes during the Tanabata festival

The story of the two lovers Orihime and Hikoboshi has always intrigued me. Tanabata is a celebration of the one day a year* in which the two lovers are able to meet. I have heard people make wishes, write them on paper, and hang them on bamboo or 'wish trees.' How I would love to write my own wish!I would buy a yukata for the festival. Actually I might buy several, a kimono, and obi sash (if I have the money too) and take them home to wear as a remembrance of my journey.

*It's the 7th day of the 7th month but goes according to a different calender so it's actual date varies in July-August.

Cherry blossom beauty at night

One of my 'musts' is to be there during the cherry blossom season in spring. Sitting under a tree with pink blossoms softly blanketing the ground sounds like a beautiful dream turned reality. Have you ever seen the beauty of a cherry blossom festival? I imagine it is something one never forgets.

If I am lucky enough to actually see and taste some of the exotic fish found in Japan it has to be with my brother. He loves fish, is actually doing his Ph.D. on the coast with them, and would appreciate the experience like no one else I know. He would go with me to Mount Fuji. With his help I would not have to rely on a wheelchair. I know my health would not allow me a dip in the natural hot springs. Still I would love to see the places where people go even if I myself cannot get in.

Japanese shrine ready for  New Year's

New Year's Eve and Day are extremely important. I would love to be there for them too. There is so much to say about what I would like to do and try. One of my simplest wishes is to simply be there at midnight to hear the bell toll 108 times.

The statue of Sadako Sasaki

I could go on and on and on but I will just say one more wish I have. This wish is personal to me because it has provided such inspiration in my life. I wish to visit the Hiroshima Peace Park on Obon Day. In the park is a statue of Sadako Sasaki. She survived the atomic bomb but was exposed to high levels of radiation and eventually developed leukemia. One day a friend brought a piece of paper to her to be folded into a paper crane. Sadako began folding cranes every day from any she scrap of paper she could find in hopes of making 1,000 cranes. According to legend, if one makes 1,000 paper cranes their wish will be granted by the gods.

The Hiroshima Peace Memorial Museum exhibit says Sadako Sasaki finished her 1,000 and continued to make more before her death. According to most, she was able to finish 644. Out of love for her, Sasaki's friends made the rest of the cranes to fulfill the total 1,000.

Her story means a great deal to me. I fold paper cranes almost every day to reach my own 1,000. My wish may never be granted but it keeps me working towards keeping the hope Sadako Sasaki held throughout her life up until the day she died. I want to be able to visit on Obon Day to leave my own paper crane at the memorial statue to honor the life she lived so bravely.

Support me in living my chronically ill life with a flair! Follow the link, http://www.etsy.com/shop/HelpMeHope to visit my HelpMeHope shop on etsy.com.

Positive Thought of the Day: Your actions may inspire more people than you will ever be able to comprehend. Remember that.

Nothing Rolling Around the Insides!

This summer I had pain off and on for weeks in my abdominal area. I did not mention it. Assuming, as always, the pain would disappear in time. For those who know me they can guess what happened. We went on vacation and bam! The pain got horrible on day two. By day three I could hardly move and my doctor said 'go to the ER.' Being myself I put it off as long as possible before my two siblings offered to take me to my usual ER. 

Long story short. I have a cyst problem which has earned me two past surgeries and lots of pain. This time my insides had a special surprise. The ultrasound showed a cyst the size of a plum. This did not bother me. 'What is THAT?' is what bothered me. The technician showed me the cyst was bleeding inside itself. Imagine knowing you have something hanging out on your insides doing whatever and then know it's bleeding inside itself. Then factor in relief on knowing your sudden stomach gain was actually all the fluid floating around in the abdomen and not another weird thing. Put it all together, with lots of morphine, and you get precisely my feelings.

My doctor got me in right away to see her (normally it's at least a month or two) and we decided to go the 'wait and see' route. Basically you hope your body 'eats' it.* My family pointed out the other route sounded good too: the cyst pops, you are in severe pain, but at least it is gone. I pointed out, "you aren't the one who would be in pain." 

*I mentioned the pain had moved. She explained it was because the fluid was actually allowing the cyst to 'roll/float' around in the area. I was horrified. No one should ever have to think something is rolling around their insides having a great old time.

Tuesday was my six (or eight?) week follow-up to check out what was going on. I did not meet with the doctor. Instead I got imagining done to 'look into' the situation. Technicians are not really supposed to give details so I asked her to simply answer two things. 1) Are my insides all there/where they should be? and 2)Is it gone?

You may think it seems stupid to ask if your insides are all there/where they should be but for me, it is a question I prefer to have answered. My first cyst was so large my doctor could not feel certain organs of mine in their places. The cyst had pushed them all into one side of my body. (Freaky stuff right?)


I feel happy to report my insides have not gone on vacation to other parts of my body. They are all where they should be. Better yet, it appears my body has 'eaten' or 'gotten rid of' most if not all of my cyst. Go body! Thanks for getting rid of 'it' and allowing me to avoid another surgery! 

I never thought I would see the day a cyst disappears as a health victory. Now I completely see it as such. Knowing my body can still kick ass makes me hope there is a better health ending out there somewhere. I especially need this boost of encouragement on painful weeks like this one. That and having your little sister home to drive you crazy with wanting to hug you is also encouraging. Minus the hugs. I know she sees it as a sign of love but when your chest is hurting it is actually quite painful to be hugged so tightly. 

Support me in living my chronically life with a flair. Follow the link to my shop on etsy.com: http://www.etsy.com/shop/HelpMeHope

Positive Thought of the Day: 
1) Close your eyes.  
2) Listen to "Air" by Johann Sebastian Bach from the 3rd orchestral suite (D minor; BWV 1068), 2nd movement. 
3) Let this week's stress float be carried away by the music.

In Immense Chest Pain...Hey ho! At Least it's Not a Heart Attack!

My dog woke me at 5:30 because he was to lazy to jump down off the bed and wanted my help. He was having a great morning. I woke up to horrible pain in my chest. Being myself I figured, "I will just lay here and hope it goes away."* After a few moments I understood it was not going away. I realized I was going to throw up (great way to begin the day!) because it hurt so bad. Instead of going to get something for it I opted to pop my prescription anti- nausea pill and hope for the best.

*This is my theory for all symptoms. Ironically, they only ever do the opposite. They get worse and I get another lecture on trying to ignore my health problems.

After about ten minutes of positive thinking I admitted defeat and dragged myself out of bed. My bathroom holds an array of painkillers ranging from prescription to your standard favorites. The only problem is I need to take Advil for the issue (more on that in a moment). Out of all the bottles the Advil was missing. So I crawled up the stairs and found my mom casually eating breakfast. She was surprised to see me. "I can't sleep because my chest hurts so bad. I need some Advil." Thank goodness the family medicine cabinet held the bottle. Why it was there I have no idea as I am the only one who uses it.

True for more than just Hermione! Thanks Ron!

My mother looked concerned and as usual, very awake at a horribly early hour. I felt she was owed an explanation. To all my readers, here is the quick version:

My junior year of college, when I was still healthy, I started my morning with a bit of chest pain. The pain got steadily worse and progressed until it hurt to breathe. My friends were worried when I could  hardly move without flinching. "You really really need to see the doctor!" As they say in Harry Potter, "She needs to sort out her priorites" because per usual mine were skewed. 

"I don't have time to go to the doctor. We have a Cell Biology exam tomorrow! I need to review the study guide etc." Yes, even back in the healthy days I was still a moron about my well-being. Not until I could barely move without hurting did I relent. My father drove down immediately to get me. In the meantime I had looked up my symptoms and found a diagnosis which fit. Not like I was going to mention it to my doctor. At the time I was a huge advocate for 'do not voice your opinion. The doctor knows all. Not the patient.'

Ironically, my suspicion was correct. He diagnosed me with 'costochondritis:' 

"Costochondritis (kos-toe-KHON-dri-tis) an inflammation of the cartilage that connects a rib to the breastbone (sternum) — a junction known as the costosternal joint. Pain caused by costochondritis may mimic that of a heart attack or other heart conditions."- mayoclinic.com

The treatment? Go out. Buy Advil. Start taking it. The pain should be gone in a week or two. Don't worry! The costochondritis won't occur again. 

Ha! Once again the doctor fell off the wagon on this one. My costochondritis felt much better after the Advil and seemed to go away like he said. Unfortunately it has yet to decide to disappear. I can go months without a problem and suddenly POOF! The costochondritis reappears without warning. I wish it would give me a heads up like 'hey! just wanted to let you know I will be back sometime in early October. So stock up on Advil and I will see you soon!"

Ah. Wishful thinking is called such because it is only the reality we hope for. Not the truth before us. Being a big believer in positive thinking (see positive thinking post) I pointed out, "Hey Mom at least it's not a heart attack or a new symptom!" I get the feeling she thinks I am a moron when it comes to health logic. Most people would moan about how horrible it is and I am smiling about the situation. I cannot help myself. If I complained about every bad health moment I would do nothing but complain all day long. I simply try to look on the bright side! Even if the bright side means still being in lots of pain and unable to get back to sleep because of it.

At the very least my dog is happy to simply be snoozing away next to me. I am happy because it's about time I made some gluten-free waffles to distract myself. Before I do commence with waffle time I will be taking more Advil. The pain-killer has an unfortunate habit of wearing off after six hours. Hence the return of the pain.

Positive thought of the day: The pain cuts through the fatigue making me feel it may be time to finally complete the watercolors I have sketched out.

Please support me in my health battle! Visit the HelpMeHope Store at etsy.com!

Everyone has a bad day...today is mine

Several days ago I got a letter which denied my application for benefits. Needless to say I was pretty upset. My doctor had warned me this is typically the case for everyone when they first apply. Unfortunately it had to arrive when I am trying new treatment ideas, tired as all hell, and feeling like I got run over one to many times. 

When I texted my feelings to the person I love the most I pretty much got a reply which took 'life sucks feeling into I don't think it's possible for me to live another moment like this.' Most people would cry. I just decided to sleep until I woke up and was healthy again. Um...yes. Life only works the opposite way for me. I didn't wake up healthy. Instead I woke up with a migraine, cranky, and had to go in for more medical testing. Combined with sharing my car space with a grouchy seven month old baby I would say life really really was at an all time low.

I cannot hold a job. No matter how much positive thinking I put forth I cannot overcome my health enough to succeed at holding one. This would not be such a bad feeling if I wanted to stay home and do nothing all day. Myself? I need a job to feel like a true human being. Pointing out having one would made me feel better is rather stupid and utterly depressing advice. Obviously I know this. 

Instead of hearing such drivel I really wanted to hear a, "it's going to be okay and I still love you." I am a simple girl. Those words do more for me than people can understand. Eventually* I finally communicated how I felt and did get the words I needed to hear. Only then was I able to start back up on the positive focus route. Which started with making actual food at 12 a.m. because I was really starving by then.

*after spending most of the day in bed feeling awful and living off a diet of weird German peanut butter puffs & GF waffles for an entire day.

I still am not having the best of days but it beats the lows of yesterday by far. At least I am eating real food in the daylight hours and not treating human contact like it is the plague. The whole experience has taught me I need to work all the harder to find a way to make myself feel 'useful' to the world. Most of all to keep reminding myself to enjoy the life I have been given and keep on focusing on the future.

To do both I have begun a new passion. My work creates a 'tree of life' which reminds one to keep on living each day completely no matter the circumstances. The trees themselves are bonsai style because I am raising funds for a chronically ill trip to China in 2014. Yep. I may be chronically ill but I want to keep on traveling and finding new moments which make life memorable.

If you would like to own one of my 'tree of life's please visit The Tree of Life Inspiration. The link will lead you directly to my work on etsy.com. Thank you so much.

Positive Thought of the Day: Every time I see the stars shining above me I know life is worth living.