Friday, January 30, 2009

A Manifesto-- of sorts

Starting in October of 2007 my life and lifestyle began to change drastically.  I was proven not to be invincible, and I launched on a journey that has taken me through physical and mental illnesses.  I've survived hospital stays, countless pricks of needles, urinating in small plastic containers, being slid through medical machines that would produce pictures of something, and taken pill after pill after pill.  It is almost February of 2009, and if you would have asked me 18 months ago what I thought I'd be doing today, I could have not even fathomed the experiences of this particular time in my life.

That being said, I've decided to launch myself on a new journey.  One of written word and mental exercises.  I want to write a manifesto of sorts, to lay down my principles in which I plan to live by, and outline some major decisions that will affect my future.  I considered a memoir, but at 27 and even with my recent experiences, I think that looking ahead to my future is a much more enriching exercise than writing about the past.  I have no hopes for this process, other than to articulate my life beliefs, prod my mind for ideas, and entertain my readers.  Every story has a beginning and this is mine.

I surround myself with good people, food, music, and smells.  I have a deep faith in God, and a sense of responsibility to the earth.  I allow room for other's views in conversations.  Negativity is not an option.  I am amazed at the education that I have been able to receive, and know that I am not through with my educational endeavors.  I acknowledge education does not happen inside the classroom alone, but is present in every aspect of our lives.  Some of the wisest people I know have been educated in the simplest forms.

To understand anything about my beliefs and principles, it is probably advisable to know where I come from, for it is my younger years that I feel most formed by.  I grew up on several acres in rural Pennsylvania, and the hours I spent outdoors playing with nature molded my mind.  The church I attended nurtured me into a caring, loving, nonjudgmental person.  My family with two older sisters, allowed me to believe I could do and be anything that I wanted.  

Throughout this writing, I will elaborate on many of these aspects.  I may write hundreds of words about one idea, but perhaps only a simple sentence about another.  At the end I believe that I will have learned something about myself, as well as the world in which I live, and you the reader will be inspired to do an act of kindness for this world of ours that we all share together.

**I can not give specific details about how often installments of this piece will appear, so please be patient, it is a work in progress and perhaps will be edited even after it has been posted.  I will make references to changes of previous posts if any occur**

Wednesday, January 28, 2009


Right now I am trusting my doctors.  Yesterday's rheumetologist appointment went fairly well.  I am being told that even though I seem to be experiencing new symptoms, it still all goes back to my fibromyalgia diagnosis.

I am trusting my doctors.  I am trusting they have ordered the right tests, that they have read the results of those tests correctly, and they have acted accordingly.  This is a tremendous amount of trust.

Trust can be hard.  I don't want to be sick.  I don't want to feel like this.  But I trust my doctors that they are prescribing the right medicines, and that their advice is appropriate.

The most recent news: the new symptoms I'm experiencing and the biggest problems I am facing are because now that I have begun to control most of my pain, other symptoms are presenting themselves that were under the pain before.  So, more pills, more advice on how to adjust, more hope, and more trust.

I pray daily for my doctors, for their insight, for their guidance and for my trust in them, that they are doing the right things.  

But You Look Fabulous

Thank you, I acknowledge that I do look healthy.  I've lost weight.  I'm eating healthy and exercising.  It's nice to hear those compliments.

But please keep this in mind:  I do not feel fabulous.  I do not enjoy the 13 plus pills I take during a day so that hopefully in a few months I might be able to function at a higher lever.  If I wasn't working so hard to feel better inside, I would not look like I do on the outside.

I understand you are trying to make me feel better, reminding me how I look.  I would also love the acknowledgment of how I feel, and of how hard I am working.  It may not look like it.   It may look like I am laying in bed all day, or under my heavy warm soft blankets in my recliner.  Some days, just opening my eyes is hard work.

I've loved all the support I've received from everyone, and I'm not by any means saying I want this support to stop.  Just know that what is on the outside, the slim strong body I am gaining through doing yoga, my smile and brighter eyes, has taking me a long time to get there.  Even if I look like I could pop out of my chair at any moment, it won't happen.  Please understand.

Friday, January 23, 2009

What's going on?

I haven't posted in a bit. So here is a random ramble to get caught up.

I've been down with sinusitis, and some possibly new symptoms of whatever condition seems to be grabbing me at the moment.  I'm on my second round of antibiotics, although I'm not very hopeful.  Last year when I had pneumonia nothing worked, and I'm on one of those now.  But I'll give it the 10 days and see how it turns out.

I think I've had some inflammation lately.  I can't really be sure, I only know what it feels like.  I feel like the area around the top of my spine is inflamed, and then my hips and my back between them.  It might also be a nerve thing, because my legs have been tingly, like pins and needles.  

One minute I'm sweating, hot, barely able to think straight (with no fever, it's the craziest thing) next minute I'm freezing cold.  And I'm keeping it a stable temp in the apartment as well as keeping seasonal clothes on even when I'm hot.  SO, I don't know... It's not pleasant. 

And the FATIGUE  oh my goodness, I sleep, I'm up for 3 hours, and I have to crawl back to bed.  It just hasn't been fun.  But the rheumetologist was able to squeeze me in and I'll be seeing him on Thursday.  I hope something useful comes out of it.

Of course we are paying out of pocket for all prescriptions, so I really am not looking forward to it, if I have to take any new medication.  

There is one thing on my agenda today, I need to make my way over to the pharmacy.  I can't find one of my prescription bottles.  Most likely when Ryan help me fill my med box last week, it got all used up, and he put the bottle aside for me to get it refilled.  Which with the way I've been feeling I have no recollection of.  And with our cat, nothing ever stays where it's been put.  I'm almost positive it needs to be refilled, so I just have to take care of that.

It's suppose to be warmer here, in the 40s, so I'm also going to take advantage of that.  

I've been crocheting some lately, I still need to work on my squares for my afghan.  I can't find the hook I was using though... so that should be on the list of things to do as well.  I went to a knitting store not far from the apartment yesterday, lots of fun with way cool yarns.  There is a drop spindle class at the end of Feb, I think I will probably take it, since I really want to learn to spin.  And then knit.... or maybe knit then spin... or maybe both at the same time.  Who knows.
I think that's it for now.

Friday, January 16, 2009

1 Rule for a Flat Stomach!!!

COME ON!!!  Really?  I've been seeing these ads everywhere and they all say as seen on Oprah, or Dr. Oz, or Rachel Ray.  First of all, why is it being so advertised, if it's only one rule, shouldn't it just be easy to follow.  Second of all, I don't care.  

If my stomach was my only concern I'd be a very happy woman.  What about one rule for living with Fibromyalgia, or one rule for asthma sufferers.  One rule for diabetes.  I mean there is more to life than having a flat stomach.  

Sure it would be nice to look a little thinner, and I admit that I am enjoying the weight I am losing on my gluten and dairy free diet.  But, just ONE rule doesn't seem real, it's too good to be true.  I've resisted clicking on these ads, just because I don't want them to get any more attention.  Everyone knows the only way anyone is going to be their healthiest and look the best they can is by treating themselves healthier.  By eating a healthy diet, and by exercising to the best of their ability.

It's sad to say that there are some people who can't exercise at all, and want to DESPERATELY be mobile.  So in my very humble opinion, I think it is vain to be touting everywhere that there is this one MAGIC rule that will get you a flat stomach.  WHO CARES??  I certainly don't.

I want to be able to go to school, have a job, hang out with my friends.  I personally don't care if my stomach is flat or not.  Shouldn't our top doctors and scientists be devoted to making people healthy instead of beautiful.  

If all the people I know were healthy, life would be beautiful for me... flat stomach or not.

Thanks for listening to my diatribe, and most likely since I wrote about it, the ad for the ONE RULE will end up at the top of this page in my google ads.  Do me a favor and don't click on it.  Thanks.

Tuesday, January 13, 2009

I want to write

I want to write, I want to write all the time, and if I could I would write volumes and volumes.  My mind works all the time, and if I could write everything down, I'm sure some of that would be profound, inspiring, and even educational.

But even with practically no constraints on my life I'm still having problems finding time to write.  Or write something that I think is worth reading.  And for some reason I feel guilty about that.  I can't find time to be productive in any sense and it bothers me.  

I have however been spending some energy reading.  I got some great books for Christmas and am almost through them all.  I see that this somehow informs my writing, but I don't feel like my reading is affecting anyone else.  And that's what I like about writing.  I like that I feel that I have something important to say, I say and it is read by someone, thereby involving someone else in my writing process.

Otherwise I could spend days not interacting with anyone I don't live with.

I don't claim to be an award winning writer.  Until recently I had a hard time stringing sentences together in any kind of coherent manner.  But I've gotten better, and I hope that I will continue on my journey.  

Some things about my writing.  I don't like to use 5 words where 2 words would do.  I like to call things as I see them.  And I would rather write like I was having a conversation with my reader, each individually, than as a journalist speaking to the masses.

While this particular blog entry isn't very interesting, and does not have much substance, it's my attempt to write for the day.  It also serves to inform you why there has been a slow down in posts lately.

I also have sinusitis... that has something to do with it as well.

Thursday, January 08, 2009

Photographic Style

As promised I wanted to use this blog to write about all aspects of my life.  And here is another one, if you haven't figured it out already.  I absolutely LOVE photography.  I have for a long time.  At my parents house, I have a photo album of my early pictures, and ribbons won at county fairs.  
Most amateur as well as professional photographers like to experiment with their photographic style, and I am no different.  I take pictures at almost any chance I get, of friends, strangers, nature, buildings, even trash.  I experiment in color, exposure, and perspective.  But time and time again, I come to find that my favorite photos are of a certain kind.

They are almost always taken from a close range, they are always in color, I especially enjoy vibrant color.  And while I like to show how I see the world, for others viewing my photography, it often takes them a moment to realize what they are looking at.

One of my favorite questions is, Did you take that?  And I love to respond, yes, yes I did.  So here is one of my most recent favorites. 

Wednesday, January 07, 2009

Mark 3

This Sunday Pastor Jason gave us a little "homework" for the next few weeks.  He asked us to practice reading scripture on a regular basis, and suggested starting with the book of Mark.  I like Mark, it's a good book, and he wanted us all to be reading the same thing, because he was going to be blogging about it on a daily basis.  

Daily scripture readings is surely not my strong point, so I decided to challenge myself to do this.  He simply wanted us to read a chapter a day, pick a favorite verse from that chapter, and then mediate on it for a few minutes.  He suggested this practice would not take more than 10 minutes.  For the first two days, I did well, I picked a verse and thought about it, went on my way feeling refreshed.  

Today, however, when I reached Mark 3 I got stuck.  I had TWO favorite verses and I couldn't pick on over the other.  I liked them for two very different reasons so I decided to present them here.  

In Mark 3 the Pharisees are watching Jesus and his actions on the Sabbath, and conspiring against him.  They even accuse him of being Satan.  In verse 3 Jesus questions the Pharisees if it is lawful to do good on the Sabbath, but the Pharisees were silent.  This is where my first favorite verse comes in: Mark 3:5 "He looked around at them with anger, he was grieved at their hardness of heart..." He goes on to heal the man with the withered hand which gives the Pharisees "real evidence" to conspire and destroy him.

"he was grieved at their hardness of heart" : I don't think it's an exaggeration to say that daily I am grieved by people's hardness of heart, probably more than one time a day.  There are things going on around the country and around the world, but even in my own city, in my own neighborhood I am confronted by people with hard hearts.  I never know how to react to these people, or what to do about the situation.  But here in Mark 3, Jesus chooses not to act against the Pharisees, but continue to good, despite their hardness of heart.  I hope with all that I have, that when I'm confronted with a hardened heart, I do not act out with anger, but do what is right and good.

My other "favorite verse" of the day is at the very end of the chapter.  Jesus' family has come to see him, asking for him among a crowd of people.  Mark doesn't actually tell us if he spoke with his family or not, but he asked the question "who are my mothers and brothers?" and in Mark 3:35 it says "Whoever does the will of God is my brother and sister and mother."

Here he is bringing his disciples and those who have gathered around him into his family, but he also brings us, (I hope) who strive to do God's will into his family as well.  What a wonderful feeling that is, to be part of the family of God, to be the brother, sister, and mother of Jesus.

Tuesday, January 06, 2009

When to make the call...

I've come to terms with the fact that I have one (or many) chronic conditions and they are going to predict how I feel on particular days throughout my life, especially over the next couple of years as I try to figure things out.

After feeling horrible for most of December and being on vacation at home with family, I realized on the ride home that my sinuses were hurting.  I didn't think that I had a sinus problem, I wasn't congested any more than usual.  A little short of breath, but I have asthma, and I was having a lot more headaches, but not out of the ordinary.  My throat has been persistently sore for awhile now, so yesterday I decided to make an appointment with my doc to see what was up.

Turns out I have sinusitis, or the crud as she so professionally put it.  I use to get this all the time, but it was always accompanied by horrible colored mucus oozing from my nose.  So, this asks the question: When am I "sick" enough to call a doctor and when should I just chalk it up to being chronically ill?

I obviously don't have the answer to this, but am looking for some insight if any of you other sickies out there are reading.

I believe that it will be something I learn over time.  I feel that I know my body pretty well, and have realized symptoms and illnesses over the years a lot earlier than some people.  So perhaps this is just another learning phase in my new body.  

It's the New Year!

Hello Friends!  It's the New Year, and I'm not going to say anything about it being a new year a new me or anything.  I've been working my hardest for about the last year to be as healthy as possible and it hasn't been an easy journey.  This I will continue into the new year, with a few extra added bonuses. 

I began a beginner series of yoga classes this morning at Grow Yoga right around the corner here in Grandview.  I feel the best when I practice yoga on a daily basis, and I hope that this class will enhance this feeling of well being.  Never did I think I would be interested in yoga, but things have changed over the last couple of years, and I truly believe in a lot of the powers of the practice of yoga.

I have also contacted a lawyer for my effort to get a little help from Social Security Disability.  Obviously my goal isn't to live on disability for the rest of my life, but as of right now I need a little monetary boost until I can get back onto a more productive path.

So that's it, no real resolutions or anything.  Just hope for a general sense of well being.  I think that's the best I can do for now.