Sayin' Sayonara to Chronically ill Locks With Love

My body keeps me from doing much to help others. There is so much I cannot do. I could cry over the loss or decide what it is I can do.

At long last! A Haircut!!

For months I have been growing out some very long locks. I decided not to cut them until they were long enough to be useful. Meaning long enough to donate to Locks of Love. They make natural hair wigs and give them for free to people who have lost their hair or lack the ability to grow any.

muhaha!

I must admit I felt a bit apprehensive about seeing all those years cut away. Holding up my pony-tail like a bizarre trophy made me want to laugh at life's oddities.  Only 30 seconds were needed to take off what took years to grow.

So Sayonara, Audios, Schuss, and good-bye to all that! I can give a little something to the world! Being chronically means giving what you can. I know it may not be much to most but I hope one person's day will be a bit brighter by my, and so many other's, locks given with lots of love.

No more long hair! Finally. Finally.

7 Things Learned This Chronically ill Week

1. Excessive Itchiness is a real side effect! I now know from experience. It's like getting attacked by the worst mosquito swarm you can imagine. Then multiply the itching of each bite times ten. I will never ever find anything amusing about the idea of 'excessive itchiness.' 

2. I never thought I would say it but the weather is interfering with my heavy metals testing. Yep. I'm not comfortable with putting my urine sample in the mailbox with it being -20 outside.

3. Disappeared is one of ID's best shows. Unfortunately, it is also one of their most frustrating and addicting shows. You can't explain the whole story and then not tell us how it ends?! Agh! And yet I can't stop watching....

4. Valentine's Day is coming up. Skip the roses. Read my lens: Instead of Roses Buy Flowers With a Unique Meaning and give your significant other something good this year!

5. After years of long long hair I'm feeling a bit nervous about cutting it off tomorrow....

6. I'm a simple person. Needing three remotes to make use of surround sound & other utterly overly hyped features is just ridiculous. What happened to simply using only one remote?

7. Having to ask who 'that person' is when it comes to your birthday cards is just a weird feeling. I feel bad when I honestly cannot place names properly with faces.

What's in Your Fridge? Ah. Yes. Your Urine.

Today was the day for the heavy metals test. I refused to do it earlier this week because it is supposed to leave you feeling like crap (aka a bad case of the flu) and I really wanted to enjoy my trip to IKEA. There's just something awesome about the IKEA store. Even from a wheelchair point of view.

Dark urine? Drink more fluids!

Back to the point: heavy metal testing. For those unfamiliar the test looks for heavy metals (obviously) via a six-hour urine collection. They give you a handy dandy plastic cup to pee in first thing in the morning. Then you fill up a vial to the appropriate line and pack it in the fridge. Step 1. Easily done.

Next you take four of the largest size pills (and I take a lot of pills) you will ever see. Then, circled by my doctor for emphasis, you need to drink lots and lots of fluid. Only no one mentions you feel like throwing up. The last thing you want to do is open your mouth to drink constantly.

I have to say the most disturbing part is having to then capture your urine in another provided-for plastic cup before putting it in a 2-litter pull-out container. When the nurse was explaining the test I thought the pull-out container was pretty spiffy. Having to pour pee in it has cured me of ever wanting to see one again.

Most of the time I try to sleep until I feel a bit better. With only six-hours of testing I simply could not do that without the risk of not getting enough 'sample.' Agh. The grossest part is having to cart your pee-bottle to and from the fridge after every time you add to it. Pee in large amounts in the fridge is just not right.

For those who are curious, I made it through the six hours without napping, vomiting, and managed one liter of yellow stuff. The culminating moment of course is having to shake all you've managed to pee for thirty seconds. Then pouring out a very small amount to be placed back in the fridge. At least you can rid yourself of the pee bottle.

I have put my two vials in their bags, inside their own boxes in the fridge, and they will get sent out in their own FedEx special sample bags. Poor post man. Life's crazy enough without people sending their piss through the mail. 

Countin Down the Chronically ill Days for a Tour in Wheelchair Style!

This spring I will be  traveling chronically ill style internationally. With the weather so cold and crappy I cannot wait to be on my way! I will be going the wheelchair way. Maybe even get one of those pimp canes complete with a seat.

Where will you be seeing me? Fulfilling my China dreams! Shanghai, Beijing, Forbidden City, and of course The Great Wall. Just thinking about the trip warms up this chronically ill gal.

After visiting Egypt & Israel I hoped the next trip I would be exuding good health. The opposite occurred. I went extensively downhill for a while but am doing a bit better. Positive thoughts and prayers for the future as always!

Violently ill? O. What Chronically ill Ironic Progress!

One aspect of the chronically ill life which I will never ever adjust to is the 'ah. a test made you violently ill? This is an excellent development!' Those are the times when my admirable (or so I am told) patience gets dangerously low. The feisty part of me wants to scream, 'Let me stab you with testing needles and show you some progress!'

I know just how she feels!

The worst example being when my doctor, who is normally excellent, decided to do neurotransmitter testing. Basically, you inject little bits of specific neurotransmitters and slowly increase the dose. Once you get sick (mind you most people have a tiny headache or feel a little nauseous) they inject you with different amounts until finding the neutralizer.

I have never reacted normally to a single one of these tests. For the yeast, under the tongue drop test, I got sick on the 1:10000(?) dose. The one they tell you it's almost unheard of to get sick on. Yeah. Except if you are me and eight minutes into the testing time start throwing up violently with pain/tingling/numbness spreading from the legs up. Thankfully the doctor refrained from any comments on this one other than shock over my fast reaction.

Back to the neurotransmitter testing which was actually round two. The first test time was supposed to test three different neurotransmitters one right after another. I got through one before getting sick and needing to get neutralized. So I was not precisely keen on trying the next round a week later. However, I want to get better and if this would help them discover the problem, I would do it.

I had several lovely needle holes in me from injections before the storm hit. One minute you are talking to the nurse saying 'eh I feel a bit weird.' The next I was laying on the floor crying (it is almost unheard of for me to cry from pain) because someone was bashing my head around. I was struggling to breathe, throwing up every time I moved (literally. I didn't know such a thing was possible.), violently shaking, and begging for someone to block out the light which felt like it was burning into my eyes.

Heck. I was laying on the floor unable to do more than lift my head (vomited while doing so) when the doctor appeared. 'Ah. Excellent reaction! We are really making progress at a diagnosis!' and smiled like I was going to agree before walking away. If I hadn't been so sick I might yelled at him 'Let me stab you with needles of this shite and I'll show you excellent progress ya bastard!'

Thank goodness he did not reappear or I might have tried to aim my vomiting at his shoes. The nurse, who is wonderful, actually could not find a neutralizing dose. She looked about to cry when I started begging her not to give me any more of this. She finally ended up giving me a different drug to stop the reaction entirely. I think she could not take a moment more of my misery. In fact, she swore to never do another of these tests on me.

By the time it was over I was to tired to snarl about the doctor's antics. My father was the one who kept muttering about 'why am I paying all this money to make you sick?' I used to defend my doctor by pointing out how we actually were supposed to find a dose to make me feel better. Instead I was just nodding and going 'I have no idea.'

I don't think the full testing effects hit me until I got home. Alright. I knew I would look pretty awful. Who wouldn't after such an experience? At least I had remembered to put my hair up to avoid vomiting in it. The part which made me choose vomit in the  hair over it was looking at my eyes. The reaction had been so awful I had burst blood vessels in them. Lovely. I had to visit the eye doctor in a few days. Now I would have to explain what I was doing to cause all those ugly red areas which horrified my mother to no end.

At my last visit my doctor mentioned doing the same injection reaction test for an allergic reaction to a specific substance. He was hasty to point out being hesitant about the procedure. I was more than hesitant about it. Especially if there was going to be smiles about me being sick and promises of this looking like good progress towards a diagnosis. The decision is 'up in the air' because everyone in my family is a bit divided. If I decide to do it then I'm laying down some ground rules. No smiling. No positive attitude. Best to wait in the shadows and watch me from afar. 

Forget Inside Inner Beauty. It's the Dancer Inside that Counts.

I saw myself in this very quote. Maybe I'm not the old lady (I'm assuming she is advanced in age) but her cane is almost a dead-ringer for my own. We both seem to have the same look. Almost like each step is a challenge to do. I don't dress in dark colors on a typical basis but sometimes I feel like I should. Bland grays and dark shades seem to fit more of how my body often feels.

Yet when I look at the picture I am reminded so much of how I am. We aren't talking about inner beauty etc etc. I am talking about the person we feel inside of us. 

When I was able to go skating for the first time since getting sick I felt her return. The graceful me which didn't have falls, never needed a helping hand to get up the stairs, and would only have contemplated the use of a cane for acting class. Having a body like this has taught me to never forget her. The part of me which my father would laugh at for dancing on tiptoes and practicing figure skating moves until the floors would shake.

Sometimes I wonder how many of us have forgotten about 'what's on the inside counting' being more than just an inner beauty reminder. Inside is the dancer in all of us. The one who transcends all the physical problems which weigh us down. Perhaps you won't see it in our shadows but I promise you, with a little determination, they will always be there.

Chronically ill Humor: The Birthday Package That Wasn't

Both my parents were excited to inform me I had gotten a postcard from my brother (highly unusual & typically indecipherable) and a package in the mail. Packages are not uncommon as I am an avid online shopper. What was uncommon was the appearance of both together. Not to mention the package was not anything I could remember ordering.

The past few days have been downright horrible. Trying new treatment ideas is typically brutal on me. I have about zero curiosity outside of ideas on feeling better meaning the package sat there through two naps and most of the day. They kept 'reminding' me about its presence aka wanted to know what was inside.

After taking one look at the postcard which I knew would take about three hours to make sense of the handwriting I decided to just open the box instead. I don't know what I thought would be in there. Almost every week I get medication in the mail but always in a weird plastic packaging. Hence why my room is like a walk-in unorganized pharmacy.

With everyone distracted by the grandchild I took a stab into the plastic and ripped open the box (see? no tolerance for surprises when I'm sick). There was no card. No pretty paper. Nope. My 'birthday' package was a box filled with three months worth of one of my numerous medications. Maybe because I feel so sick or maybe because I have an odd sense of humor I found it all rather amusing.

I had to laugh a bit. Everyone was so excited over a mystery box of medication. What an ironic 'birthday' package for someone chronically ill like myself. Even birthdays never go by without a not so subtle reminder of this life.

My parents who had been eagerly awaiting the contents (I could have told them my brother is to cheap to send gifts via mail. He doesn't even send postcards unless they are free) looked downright disappointed when I told them what it was. My father even came over to look into the box itself like I had gotten confused about its contents. Sorry pops. The medical company just felt like sending a package ironically around my birthday. 

The box sits here on my kitchen counter as I write this. Looking at it makes me laugh all over again. I almost feel like writing a thank you to the company. 

'To whom it may concern, 

I would like to thank you for changing up your typical mailing packaging and the name of where it came from. You really threw me for a loop. Not to mention knowing just what to get me! What would I do without you guys to make these chronically ill birthdays so memorable? Next time let's go out for a drink to celebrate!

Sincerely yours,

L

Shakin' Like You Wouldn't Believe

In polite conversation I refer to them as 'shaking.' Others refer to them as 'tremors.' Truthfully they are just a pain in the ass. One which turns me into a grouchy  hermit unwilling to interact with the world.

My shaking hands are my Achilles heel in this chronic illness. Take away my ability to walk, give me pain, make me look far to sickly, but please let my hands remain perfectly steady. My hands are what makes me the person I am.

I need them to paint, to create, to give life to the hope I hold for a healthier day. When I have a day like yesterday I cannot talk about things I've learned or trips to plan. My whole purpose is in holding together myself for the sake of everyone around me.

What else could I possibly do? Yesterday's hands were shaking so badly I could not feed myself. My boyfriend cut up the roast and finally ended up getting me a spoon when I kept  dropping my fork. I cringed for myself when I kept struggling to get the food where I wanted it to go. The whole business embarrassed me to no end. No matter how much people argue otherwise, I will always be embarrassed at such a weakness.

After spilling hot tea on myself I gave up on eating. I was still hungry but the simple act of eating was just to much. Most people would cry. I think I cannot. Life's not fair. My tears will not change that and neither will feeling sorry for myself.

Today I've decided to pull myself out of my shaky 'funk' and get back to writing. So here I am. Blogging and living. Perhaps not the steady life most of the world has but still doing my best to live with what I've been given and be happy doing it.

A Belated 7 Things This Chronically ill Week Has Taught Me

1. My favorite restaurant is awesome. Who else would put candles in my crème brulee for me to make a birthday wish?

2 If you have to shovel more than three times a day, you might as well give it up and stay home.

3. Hot apple cider with Goldshlager, Crown Royal, and cinnamon is the perfect warm-up on a cold winter evening.

4. Perfectly cooked asparagus is delicious. Poorly cooked asparagus is bad. And horribly cooked asparagus is downright nasty.

5.There's nothing like a good paperback from the 90s childhood. With titles like: 'There's a girl in my Hammerlock, Pirates Don't Wear Sunglasses, and Sideways Stories from Wayside School' you just can't go wrong.

6. Having seen this video, Free Plastic Surgery for Bullied Teen NADIA ILSE, I don't know what to say. For all it's worth, I think she was beautiful before and the doctor who suggested more plastic surgery seems like a real tool.

7. Teavana makes the most delicious Raspberry Mint loose tea.

Keepin' Chronically ill Resolution #20

 Chronically ill Resolution #20 states: No longer be afraid to share all I love. I have a great deal of loves but the one I really feel needs to be shared is manga. If you're like my family you might be going...'What normal person would admit such a thing to the world? Let's just be glad she hasn't told anyone else we know.'

Live Life. Love Manga.

I'm not the comic book guy from The Simpsons. Overall I think, other than the chronic illness issue, I look pretty normal. I don't go around carrying manga and quoting facts about to random people.  What I do believe is that everyone should have an open mind when it comes to reading something new.

People who don't know anything much about manga, are looking for a place to read manga, or good ideas on which mangas to read....I'm sharing my love by creating a place where you can find a little bit of all the before-mentioned. You can find it here at: http://livelifelovemanga.blogspot.com/

 

Hey Jealousy. You're Quite the Heart Breaker

I don't know if it was the wine, the GF contaminated food, or just 2014 being an all-around tool which led to yesterday being one of those 'could life feel any lower moments?' 

Holding a bundle of  love in my arms.

When I woke up there were definite signs today was not going to be a good health day. I was shaking so hard I had trouble getting food where it needed to go and unfortunately for me, no one told me they had been making pizza with the shredded cheese.

Most people would probably have given up on any plans of leaving the house after having to pull over so they could throw back up their contaminated lunch. (This is why I have a separate kitchen! So I won't be throwing up on the side of the road because someone got a little sloppy with their gluten foods!). However, I am not most people and think my two concussions may have robbed me of some common sense.

I wanted to go visit my long-time boyfriend's new niece. Everyone has seen/held her and I wanted to do the same. Even if it meant being literally curled up in the front seat hoping the hour-long drive would ease the after-gluten effects (it didn't really). When we got there I was moving at about snail's pace and only after a bit of wine, and lots of mental 'please, please do not get sick' did I feel semi-normal.

More importantly, I did get to hold the baby. She was perfect, adorable, and quietly asleep. I did not have her in my arms for long. I worry to much about the combination of something so precious and my wreck of a body. She spent most of the time in the arms of my long-time boyfriend. He comes from a very large family so holding babies is like second-nature.

Seeing that brought home the realities I have been ignoring in our relationship.The biggest issue being children. Before being sick I never really thought about them. Kids were all well and good so long as they happened to be well-behaved and o...were not my own. On the list of things to do in life they were there because they should be. Not because I had any desire to have one any day soon.

When we left the house that evening I felt the strangest sensation. As we passed through the lights of the city it grew until I finally understood. I was jealous. More jealous than I have ever thought I could be. Not about her being a mother (I have numerous friends who are mothers) but about being able to take the role of being a mother so lightly.

There was a single tear (blast when that happens!), a few more unstoppable ones, and then I was sobbing. It's difficult to explain all the crap I was facing at the moment. Jealous because being chronically ill really is just so f***ing unfair. Angry at never having the chance to do what so many others take for granted. Devastated at the idea of never being able to properly take care of a child much less have one.Disappointed at letting myself fall into such a state over something which should not matter right now and filled with guilt over feeling so much when I should just be happy for someone else. And on and on...


If you've made it this far then I won't bore you with the details. I will tell you where our long-discussion, half a pint of ice-cream, and an alcoholic beverage has left me. In fact, I will even do it in list format to make it reader friendly.

1. It's alright to feel angry, sad, guilty, or just emotions in general about this whole crappy situation. Doing so does not make me an ungrateful negative person. Just a highly-stressed chronically ill one.

2. Being realistic is important but keeping up the hope for a healthier future is just as important. Don't count out life's possibilities so easily.

3. I want to give any child of mine the best childhood I can. No matter what excuses people might have I know I could not give them the best. Heck, I can't even do the stairs properly. Sometimes even taking a shower is an accomplishment, getting up and carrying around a screaming baby for hours? Probably not gonna happen.

4. I don't know what the future holds for us. Maybe I will wake up perfectly healthy tomorrow. I will do my best to let the worries of today not taint the hope for tomorrow. Thinking like that is harder than it sounds but worth the end result.

Cold? I'm freezing my royal Rastafarian nay-nays off!

Today is a day where you must employ a little quoting from Cool Runnings and definite Surname Positive Thinking. When your chronic illness is like mine you are used to being a metaphorical 'bird in a gilded cage.' The house is nice, view is nice, but you still cannot leave unless someone helps you out. In the beginning it is a bit horrifying but you figure out ways to make do.

So cold. You might just snap off a dread lock or two!

One of the ways I 'make do' is by going outside alone, for a personal moment of entirely fresh air with a lake view. Sometimes my family is around all day. Those days I cannot go anywhere without them hovering over me. I cannot find a moment's peace in the fresh air if everyone wants to chaperone my very steps nor if they are sitting at the windows pretending not to be watching what i do.

To get my solitude on those days I wait until everyone goes to sleep. I am a night person plus the only person I have to worry about is my younger sister. She lives on the same floor but is rarely home. When home she sleeps like the dead. Even if I get up, go outside, come back, and move her over she rarely does  more than make a noise and roll over.

Today I was looking forward to a moment's peace in the winter air. The snow is perfectly white from a fresh fall and the sun is shining over the lake. If I could paint landscapes this would be a view worth capturing. Unfortunately this view also comes at the price of -40+ degrees F. Now that is cold with a capital C. 

Normally I would brave the cold but I move pretty slow. By the time I got outside to my usual place to stand and see the world I would probably be on the verge of frost-bite. Then have to slowly make my way back inside would mean being out in the ridiculous cold long enough for a lecture with possible medical attention needed.

With everyone around me I fear even getting to close to the door. They might blame my sudden insanity to go outside as being a concussion residual and send me back to bed to 'rest up without doing anything.' Looks like I will only be able to appreciate the fresh air from behind the windows of my 'gilded' cage.' 

To cheer myself up until the temperature gets back into the positive digits I will employ my Surname Positive Thinking. Hey ho! The negative temperatures are keeping me inside but at least I have a reason now to sip a glass of Riesling and enjoy the flames of the 'fake' fireplace!

24 Chronically ill Resolutions (for life not just New Year's!)

I'm choosing to make resolutions for life because honestly, I don't think I have ever managed to keep a New Year's resolution. Why not bypass the impossibly high standard and go instead with ones for life? Alright. Here they are!

1. I will complain about pain. Living with a pain on a near-daily basis means it has to be incapacitating in order for me to complain. According to my nursing sister this is a very stupid way to go through life. One should tell others about pain but then...? I'm not precisely sure what then!

2. I will attempt to give more vegetables a fair chance, including all types of squash, eggplant, and even tomatoes. We shall see how it goes.

3. I am going to remind myself to eat on a more regular basis so I can avoid lectures on my sporadic eating habits.

4. I will continue looking for a means to support myself.

5. I will look forward to the future aka meaning some where the air is fresh and the sea is close.

6. I will face the cold without complaint. Now that I feel the cold again this negative degree weather really sucks.

7. Everyday should be a day where something gets done, even if its only a few moments of worthy work.

8. I will say I love you less . Instead of saying those words I will let my actions speak for themselves.

9. I will face my fears today and not tomorrow.

10. This goes for making phone calls. I hate calling doctors but I need to do it now to avoid a disaster later.

11. I will find more to love in the mirror than to hate.

12. Compassion is a part of me. I will look for ways to share it. There must be something this chronically ill gal can do for this world!

13. I will try to understand others insecurities even when they just downright confuse me.

14. I will not let the past feelings between family stop from building worthy relationships for the future.

15. I WILL donate my hair BEFORE I leave on an international trip.

16. I will become adept at typing on my new e reader.

17. Technology will be a friend NOT a foe.

18. Love more. Think ugly thoughts less.

19. I will yell or throw things or cry to show anger. Not just smile & laugh.

20. No longer be afraid to share all I love.

21. I will paint without fear. Sometimes you need to let go of your artistic worries and go for it.

22. Accept my chronic illness as is. No matter what may happen.

23. No matter how bad my body is feeling, how impossible walking becomes, how scary the tremors look...I will get past them. Life is to short to allow my health to stop me from the friendships I treasure.

24. I will get over myself and look to God in my times of need. He is always there for me. Even when I am to stupid to remember it.

New Year Resolution? Share Some Inspiration!

Happy 2014 my readers! What is your New Year's resolution? Share it on this post to give myself, and the world, a bit of New Year inspiration!

Inspired by the world around me? Of course!

What is this chronically ill gal's own resolution? You will have to wait on that particular entry. I promise to post it soon. If not later today. Until then, a very happy New Year to all!

~L