Monthly Archives: May 2014

A little gratitude is in order…

I was thinking tonight, as I have been a lot lately, about a friend who is going through some hard times, as well as her family who are by extension experiencing a difficult time. 

I can’t say I’ve ever been in the situation she is in, and for that I am glad. But watching her and her family go through this has made me feel a couple of things:

1.) I feel grateful that I do not, and have not ever, really felt the need to be someone I’m not. I may not always know who I am, or like who I am, but I do not ever feel the need to pretend to be someone else. The parts of me that I know and am familiar with, I like and would not change for anything in the world…the parts of who I am that I don’t understand, I’ll just love and respect anyway and fudge it until i figure them out. It pains me to watch my dear friend feel like she needs to fake who she is, and pretend to live a life that isn’t hers…I don’t know if she realizes that that is what she is doing, but that’s my relatively expert assessment of the situation. It’s sad, really sad, because who she is is wonderful, and beautiful, and special. There are days I envy her some aspects of her life, and I am sure that there are many people in the world who would trade her in a heartbeat…although she would never believe me if I told her that. I mean, I get why she is doing it, and I sort of don’t blame her…but it makes me sad for her, that she does not know how to love her life for what it is. It also makes me sad, and scared, for her because from what I can tell her need to live this opposite life is going to cause some really negative consequences, and has already to an extent. So I am glad, I am who I am, and I love that. No apologies, no hiding it; take it or leave it baby. 

2.) Number 2 ties in to number 1…I feel thankful that I have the moral compass that I do. I am a very black and white person…right is right, wrong is wrong, and most of the time I know the choice I need to make because my instincts leave no questions unanswered. It makes me sad and concerned for my friend because she does not have that…I can see her, metaphorically speaking, drifting in this vast sea of lies and poor choices…and it is going to destroy her one of these days, maybe soon. The sea has been rising for many years, and is getting very close to enveloping her and I am afraid she will drown. She has never understood why I place such an importance on truth, something as simple as “if so-and-so asks just tell them _____” or staying out past curfew and sneaking in the house feels so wrong to me that it makes me physically ill sometimes.  When it comes down to it, I choose to live my life 100% open and honest, and it doesn’t matter how trivial something is, if it doesn’t meet that criteria I want no part of it. And I love that part of me…sometimes it causes trouble, and sometimes it hurts (sometimes it hurts a lot), but it’s me, and it’s a good thing.

Also, I am thankful that I have never felt the need to be angry at the Universe or life for handing me the rather shitty health card I’ve been dealt. I have never really said “why me?” or “this isn’t fair!”..and I’m so glad. I like my life, as hard as it is sometimes, I’ve learned a lot and it has made me a much better person for it. 

3.) I feel eternally blessed to have the wonderful parents that I do. They are my best friends, the foundation of my entire support system, and have taught me many of the wonderful things that make me who I am. It is not lost on me how lucky I am that I can tell them anything and everything, and I don’t have to feel like I need to lie or keep things from them…I have never really felt that way. It makes me sad how many people I have encountered in my life who do not have that with their parents. Somehow I seem to attract these friends who come from dysfunctional families, maybe it’s because somehow the Universe knows that I need to teach them sometimes…that’s what I hope it is anyway. 

4.) I am glad that after many many years I am finally learning how to stand up for myself a little bit, how to vocalize my needs and thoughts completely unapologetically. I have opinions and thoughts, and they are usually good ones…and I have things I need, and it’s ok to ask for them.

It was nice to write this post tonight; I’ve been feeling rather down lately so it was nice to sit and force myself to write out a little gratitude. I am very worried about my friend, and what consequences her choices are going to bring her soon; but the situation was starting to make me very stressed and I needed to turn it in to a positive thing for me, as well as put a little distance between it and myself with a conversation I had to have tonight. 

3 Comments

Filed under Uncategorized

“Nothing can dim the light which shines from within”

Dr. Maya Angelou passed quietly in her home before 8:00 a.m. EST. Her family is extremely grateful that her ascension was not belabored by a loss of acuity or comprehension. She lived a life as a teacher, activist, artist and human being. She was a warrior for equality, tolerance and peace. The family is extremely appreciative of the time we had with her and we know that she is looking down upon us with love.” — Statement from the family

I grew up on Maya Angelou, she is one of my mom’s all time favorites. I remember in elementary school practicing my handwriting/grammar/spelling skills by taking dictations of her poems (a task I did not care for at all, but I loved the poems). I remember my mom quoting lines to me at various appropriate times in my adolescence. And now as an adult I have found solace in her work, including recently with my divorce and health problems. 

Here are some of my favorite poems/quotes:

I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I’ve learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I’ve learned that regardless of your relationship with your parents, you’ll miss them when they’re gone from your life. I’ve learned that making a “living” is not the same thing as making a “life.” I’ve learned that life sometimes gives you a second chance. I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back. I’ve learned that whenever I decide something with an open heart, I usually make the right decision. I’ve learned that even when I have pains, I don’t have to be one. I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I’ve learned that I still have a lot to learn. I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. ― Maya Angelou


 

“If I am not good to myself, how can I expect anyone else to be good to me?”  — Maya Angelou


 

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill 
for the caged bird
sings of freedom

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.  — I Know Why the Caged Bird Sings


 

 

http://www.mayaangelou.com

http://www.poemhunter.com/maya-angelou/poems/

http://www.usatoday.com/story/news/nation-now/2014/05/28/maya-angelou-quotes/9663257/

http://m.deseretnews.com/top/2520/0/15-inspirational-quotes-from-Maya-Angelou.html?ref=http%3A%2F%2Fpub.vitrue.com%2FS0LX%3Fref%3Dhttp%3A%2F%2Fpub.vitrue.com%2FS0LX

Leave a comment

Filed under Uncategorized

New patient paperwork fun…

As I am sure a lot of you can sympathize with…I absolutely despise new patient paperwork. I can’t tell you how many times I have filled these stupid things out; it always takes me forever and completely wears out my right hand/arm. Not to mention, there’s nothing like have to go through pages of check boxes and mark everything that’s wrong with you to make a girl feel like she’s dying or something. I don’t have the energy to count, but I’m pretty sure I checked more “yes” boxes than “no” boxes this time around. :/ 

Note: I marked “yes” for more lyme disease symptoms today than I did before starting treatment…isn’t that lovely. Image

 

And this isn’t even including the other 6 pages of biographical info and ridiculous amounts of family history I just filled out (I mean, who seriously knows all of the medical problems their grandparents have/had?!) 

And don’t even get me started on the medication list!! Mine takes a whole sheet of paper, front and back now! 

At least this doctor’s office is thorough…let’s hope they are that thorough when it comes to running diagnostic tests! 

2 Comments

Filed under Uncategorized

The truth is…

People like to tell me that I’m strong, brave, inspiring…it means the world to me, really, but I just don’t believe it. I’m not anything special, I’m just here doing what anyone else would do in my shoes…the best I can do with what I’ve been given. 

And the truth is, I’m really not strong, or brave, and I’m definitely not inspiring. 

I’m scared, and I’m weak; I’m sad, and I’m alone…and I’m done. 

You know what I did tonight? I sat in the shower, after a quick 5 minute shower done sitting in a shower chair, and cried for a longggg time because I couldn’t get out. I couldn’t move, I couldn’t breathe, I could barely even cry. I felt like I was dying, and I really wished I was.

I’m not sure why I’m using past tense here…I still feel all of those ways. 

It took me over an hour to get out of the shower, dressed, teeth brushed, pills taken, and in to bed. Tasks that should take me like 10 minutes total. 

Now I’m laying here in bed, barely able to move more than my fingers (thank goodness I can still move those!), in agonizing pain. It hurts to breathe, it hurts to think, it hurts to be alive. My legs feel like they are literally dead (happens every time I lay down lately, sounds fun right?), my head is pounding, my face feels like someone beat it to a pulp, and my back aches so badly I have no words to describe it. 

Yet this morning? I was fine. I made a bunch of phone calls, checked things off my to-do list, had a good day at work, was even in a fairly good mood…and then I crashed. 

I want off this roller coaster ride of “ok” days and horrible days. 

I don’t want to feel like this. 

I don’t want to do this anymore. 

See? Told you. 

5 Comments

Filed under Uncategorized

Yep, definitely crazy

So you know a while ago when I said here that I was feeling down and melancholy, but that it wasn’t exactly like a bipolar mood swing? I take it back. It’s exactly like a bipolar mood swing. I’m sure now because now I’m having manic episodes.  

Perfect. Just what I needed.

Before starting treatment for lyme I was 99% perfectly managed on my mood stabilizers. I had only one or two, very mild, mood swings every few months. Now? Every day is a different mood, some days more than one. 

Friday afternoon I was happy…unfortunately. That’s one of the worst things about being bipolar, I can never just be happy…I’m always afraid it’s the beginning of a manic episode. Friday, it was. I got happier, and happier, until I was shaking with energy and bouncing off the walls (almost literally). Driving too fast, screaming at the top of my lungs, ready to go run an iron man marathon even though less than an hour before I was exhausted and in a ton of pain. I couldn’t think, didn’t want to think, my mind was going a hundred miles an hour. I needed to DO something, scream, run, jump off a bridge…anything to make it stop. 

It was the worst manic episode I have had in 5 years, since I started taking the mood stabilizer I’m on now (probably longer than that!). Luckily a phone call to my mom helped me ride it out until it passed, or I probably would have ended up in the hospital. 

*Note: I have the best mom ever. She gets random phone calls from me every other day or so now, because I’m in some weird mood, and she just talks it out with me until it’s over. She keeps me sane. 

I hate this. I hate this. I hate this.

There is a reason I may be the most med compliant bipolar patient you will ever meet, it’s because I hate feeling this way. I hate how when I am symptomatic, everything that is good about who I am is gone. 

I have never encountered a physical symptom, pain level, or issue that I couldn’t cope with…but I cannot, will not, put up with feeling like this. 

Now, what to do about it? Ugh. 

2 Comments

Filed under Uncategorized

The spirit of relationship past…

The other night I was doing that thing I do, you know, where I dance around the kitchen to my favorite song of the week and sing while I cook?

You used to laugh at me for it. I used to make you leave the room. 

Only this time I wasn’t “home”, I wasn’t in “our” kitchen, and you weren’t in the other room watching tv.

It was the first time I had let loose like that since…you know. It was nice. 

But as I was dancing, and cooking, and singing to my music, I felt you. If I didn’t know better I would have sworn you were there, sneaking up behind me like you used to do, about to wrap your arms around me, kiss my cheek, and probably tickle me (knowing you). Back when we were happy, you did things like that. I half expected to see you there when I turned around. But of course, you weren’t there. 

Never again will you do that to me, or make me smile like that.

Never again will we be that kind of happy. 

That makes me just a little bit sad. 

1 Comment

Filed under Uncategorized

The positive side of lyme disease…

Last weekend I attended a wonderful event in Jacksonville called Lyme In The South Music Fest.

I felt really awful…like really REALLY awful. I was in a lot of pain, and was very weak and shaky, so much so that I could barely walk! But it didn’t even matter, I had such an amazing time! I met lovely friends, some of whom I had only known online until this event; I listened to incredible music, some of which was played by amazing musicians who have battled lyme disease and now use their abilities to raise awareness; I heard wonderful speeches given by a well known and respected LLMD in the state, as well as a researcher at a local university who is doing amazing work to spread (and prove!) the truth about lyme disease in the south; and I enjoyed a beautiful afternoon/evening on the St. Johns River.

Here are a couple of pictures of the event…

Image

 

Image

 

 

Image

 

Just a few days after this event, there was a protest at the headquarters of the IDSA (Infectious Diseases Society of America) located in Arlington, VA. For two days protestors stood outside the building, called, emailed, etc. The majority of these protestors, were sick people. People who have suffered, and ARE suffering, and yet found the energy to travel, stand outside, make phone calls etc.

 

Image

 

Image

 

I am constantly amazed at the lyme community; I am fairly newly diagnosed, and haven’t been around these people for that long, but it is absolutely incredible to me the amount of love, caring and friendship that exists, often for total strangers. I have been around many online support groups for various diseases; fibromyalgia, lupus, chronic pain, candida, etc. and no where have I found the kind of support I have found in lyme groups over the last few months.

A friend of mine said how I feel perfectly when she said:

“We love together, cry together, laugh together, and most importantly, we fight the injustices of the medical community in this country for better diagnostics and treatment. To each and every one of you I held and embraced, and to those I did not, I love you with a full heart.”

(All pictures were taken by personal friends of mine)

1 Comment

Filed under Uncategorized

Being a grown up is overrated.

So my birthday is coming up in…11 days. Woo hoo? I think this is the first time I’ve ever been really not excited for my birthday. I guess that makes me officially a grown up now?

I mean, I’m excited to spend time with family and friends, and I always make it a point to treat myself to something for my birthday and spend a little time relaxing (it’s basically the only time I do that all year), so that’s exciting.

But it’s also the first birthday I’ve spent alone in 5 years, the first birthday since my parents moved out of state, and the first birthday where I really feel like my life is slipping away.

This is SO not where I thought my life would be at 25…and that’s depressing. 😦

5 Comments

Filed under Uncategorized

Crazy. Crazy. Crazy.

This treatment, or maybe it’s the disease, is really screwing with my brain lately. Or maybe I’m just crazy…that’s an entirely likely possibility… I’ve been told treatment can do this, but honestly who fucking knows what’s what anymore. 

I’m a happy person, a positive person, a calm even in the face of a storm type of person…but apparently not anymore! Now I am a moody, melancholy, down, stressed, sad, everything sucks type of person. I hate that. 

I feel like it is slowly chipping away at what makes me, ME. (See, there I go again being all melancholy and negative!)

My moods flip out of nowhere, but it’s not exactly like a bipolar mood swing because those I’m used to. It’s more like I will be ok, content, my usual self…and then out of nowhere, BAM! Sad. Or angry. Or lonely. Or depressed. (You get the picture).

I feel so terribly alone, even though I know I’m not…I have family, and really wonderful friends. I guess talking to, or being around, other people helps keep me me by warding off the melancholy.  The problem is, other people have lives…they can’t just babysit me all the time to keep me sane, and I don’t want them to have to. I don’t want to tell people that I am so needy lately because I feel like this. I don’t want to be a burden. 

Maybe I just need sleep…but I’m probably just crazy. 

 

20140521-002716-1636203.jpg

8 Comments

Filed under Uncategorized

Just muscle test it!

“Just muscle test it!”

A friend said that to me this weekend.

“WHAT?!” I said.

I mean, I know what muscle testing is…it’s used by some homeopathic doctors to determine where you have issues in your body and what treatments to use. It is part of applied kinesiology…which is defined as:

Applied kinesiology is a pseudoscientific technique in alternative medicine claimed to be able to diagnose illness or choose treatment by testing muscles for strength and weakness. ”

My chiropractor/acupuncturist does it every time I see him, to help him determine what part of my spine needs attention and where he should place his acupuncture needles. It sounds like some strange, hocus pocus stuff, but I’m telling you right now something happens because one second I can resist his push just fine, and the next second my arm is down by my side no matter how hard I try to keep it up!

However, I have never heard of using it for a situation, like my friend was suggesting. She says if you’re ever unsure of a decision to make or if something is going on, just ask the universe by muscle testing it.

So I figured, what the hell? I’ll try it.

So I stood very still, with my hands folded in front of my heart (just like she said to), and asked my questions.

My answers? Yes. Yes. No. (No, I will not tell you what the questions were! :P)

I guess we will just have to wait and see if the universe is right!!

Links to explain muscle testing:

http://encyclopedia.thefreedictionary.com/Muscle+testing

http://www.healing-with-eft.com/muscle-testing.html

3 Comments

Filed under Uncategorized