Monthly Archives: June 2014

Akhilandeshvari- no my cat did not just walk across my keyboard

So I’ve had kind of a negative attitude lately (ok, a really negative attitude)…especially this week since it’s been kind of a rough one; well today I read this post on Elephant Journal, and I decided that I am going to try to change that.

 

Akhilandeshvari:

“Ishvari” in Sanskrit means “goddess” or “female power,” and the “Akhilanda” means essentially “never not broken.” In other words, The Always Broken Goddess. Sanskrit is a tricky and amazing language, and I love that the double negative here means that she is broken right down to her name.

But this isn’t the kind of broken that indicates weakness and terror.

It’s the kind of broken that tears apart all the stuff that gets us stuck in toxic routines, repeating the same relationships and habits over and over, rather than diving into the scary process of trying something new and unfathomable.

Akhilanda derives her power from being broken: in flux, pulling herself apart, living in different, constant selves at the same time, from never becoming a whole that has limitations.

 

This goddess has another interesting attribute, which is, of course, her ride: a crocodile.

Crocodiles are interesting in two ways: Firstly, Stoneberg explains that the crocodile represents our reptilian brain, which is where we feel fear. Secondly, the predatory power of a crocodile is not located in their huge jaws, but rather that they pluck their prey from the banks of the river, take it into the water, and spin it until it is disoriented. They whirl that prey like a dervish seeking God, they use the power of spin rather than brute force to feed themselves.

By riding on this spinning, predatory, fearsome creature, Akhilanda refuses to reject her fear, nor does she let it control her. She rides on it. She gets on this animal that lives inside the river, inside the flow. She takes her fear down to the river and uses its power to navigate the waves, and spins in the never not broken water. Akhilanda shows us that this is beautiful.

 

 

I love this so much. Somehow it was exactly what I needed to read today.

Between my divorce and recent health discoveries and frustrations I feel so broken. I feel like over the past year that crocodile has dragged me into the river and spun me around over and over and over until I don’t know who I am or where I’m going anymore. I am so afraid; of where my life will go from here, if I will ever get well or rather just continue to get worse and worse until something kills me, if I will be alone forever, if I am too sick and stupid to accomplish anything with my life. Those are just the ones I can vocalize, I feel like there are so many more fears hiding under the surface that I don’t even understand enough to be able to describe them.

So today I have decided to be a goddess; I will get on my crocodile and ride my fears right to something beautiful. I will be never not broken, and it will be amazing.

Akhilanda is also sometimes described in our lineage like a spinning, multi-faceted prism. Imagine the Hope Diamond twirling in a bright, clear light. The light pouring through the beveled cuts of the diamond would create a whirling rainbow of color. The diamond is whole and complete and BECAUSE it’s fractured, it creates more diverse beauty. Its form is a spectrum of whirling color.

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With brokenness comes great potential not only for change, but for refining and smoothing and shaping.

 

So now is the time, this time of confusion and brokenness and fear and sadness, to get up on that fear, ride it down to the river, dip into the waves, and let yourself break. Become a prism.

All the places where you’ve shattered can now reflect light and colour where there was none. Now is the time to become something new, to choose a new whole.

 

Read the full article here: http://www.elephantjournal.com/2011/06/why-being-broken-in-a-pile-on-your-bedroom-floor-is-a-good-idea-julie-jc-peters/

Pictures from the article, and google, respectively.

 

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Salt, socks, and heart beats

I know I promised a post about the new treatment I tried…be patient, I have another appointment this weekend and maybe I will write after that. One session just isn’t a very good gauge of how it helps.

For now, however, I have big news…I have (another) new diagnosis. Ready for this one? 

Brady Tachy Syndrome. 

Weird name, I know. 

Anyway, it means that the electrical system that tells my heart when to beat is fried, and therefore my heart is just doing all kinds of weird things. It speeds up, it sloooooows way down, it skips beats, and the top half likes to be impatient and beat before the bottom half is ready. 

I told you it was weird. 

 

So I got a crash course in how to read an EKG from the doctor today, so I’ll pass on to you the bits of info that stuck…just because I think seeing the EKGs really makes it evident what I am talking about. 

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Where that arrow is is where my heart SHOULD have had a beat, but didn’t. 

 

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See up at the top left there? It says “bradycardia: 40 BPM, duration 12.4 seconds”…that means that my heart was only beating 40 beats per minute, that’s badI was sleeping, so it should be lower than normal, but not THAT low. Much lower than 40 and you’re talking about not waking up in the morning! 

Now check out this one!…

 

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That says that my heart rate got up to 156 at one point! And look at the difference between these lines and the last ones! (Now, it is NORMAL that the lines go up and down like hills, the doctor said that is because something pulled on the EKG lead stuck to me…but how squiggly and irregular those lines are is NOT normal!) Not to mention 156 BPM is not normal either! 

 

 

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THAT arrow shows a “ventricular ectopy”…which is defined as Ectopic heartbeats are small changes in an otherwise normal heartbeat that lead to extra or skipped heartbeats…

  • Premature ventricular contractions (PVC)
  • Premature atrial contractions (PAC)”

That’s what I meant when I said that the top part of my heart likes to get impatient and beat before the bottom half is ready.

 

So what all of that means is that 

a) I am developing A-fib (atrial fibrillation- a type of arrhythmia that leads to the heart “quivering” as opposed to beating”). This does not surprise me, since my dad has been diagnosed with a-fib.

b) It most likely explains some of my fatigue because it is very stressful to the body to have the heart doing all of these crazy things.

c) It is very possible that this is keeping me from getting restful sleep, because my heart rate drops so low while I’m sleeping, and then the body over compensates and raises it again…preventing me from staying in REM sleep (when you really get rested).

d) I need a beta blocker (blood pressure medication) to lower my heart rate, but I can’t take one because then my heart rate will go TOO low! Like it could go SO low that it would stop in my sleep! (During this test there were a couple of times where my heart did stop beating, once for 3.4 seconds and once for 4.5 seconds…and I wasn’t on any blood pressure medication!).

So what IS there to do about it?

A pacemaker. Yep, at age 25. 

 

That freaked me out at first, like a lot, but I’m coming to terms with it. The doctor said I do not have to rush, I can chose to have the surgery now or try to wait a few months…but when it comes down to it I will inevitably need it done.

The fact is that I believe that my body will not be able to heal from the Lyme and everything else I have going on while it is working overtime to deal with my heart acting up. Plus, I feel like crap, and this has the potential to really help me feel better. The doctor also said that this will inevitably get worse, and there could be seriously negative outcomes when that happens. 

My LLMD feels that it will get better once I treat the lyme disease, but I disagree, as so does my cardiologist. The cardiologist insists that I would have developed these issues regardless of whether or not I had lyme disease, that just may have sped up the process (since I am a little young to have this condition). So the question is then, do I wait and see if it gets better with lyme treatment, feeling shitty the entire time? Or do I go ahead and have the surgery, to hopefully give my body (and myself) a break from all this nonsense so I can get better?

I did find as I was researching a little that it is possible to have the pacemaker removed later on if I no longer need it…so that makes me feel a lot better about the whole thing. 

Still, it’s such a dilemma. 

I will say this…right now I am definitely leaning towards surgery sooner rather than later. 

 

The other info that came out of this appointment is that the large, essential veins in my legs are “stretched out”…meaning that my blood likes to go down to my feet and not be able to come back up. This makes my legs hurt and feel heavy, my feet turn all shades of blue/purple, and is probably the reason I passed out during my tilt table test. So because of this, I am now doomed to the infamous compression stockings every day for eternity…since there is nothing that can be done to repair the veins or relieve this problem. Yet another thing that makes me feel like shit, and will continue to get worse and worse as my life goes on with no hope of relief. My sole hope lies in some really tight pantyhose and being able to consume as much salt and water as is humanly possible.

I’m doomed

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Real talk.

It’s really nice to have this blog to pour my thoughts into, especially the thoughts I don’t want to say out loud or bother other people with.

Like this one tonight….

Ready? It’s time for some serious real talk now…

I’m jealous. I’m angry. I’m sad. Mostly I’m just jealous.

I have quite a few friends with lyme disease, some I knew before I was diagnosed and some I met in support groups after. It’s lovely to have people who really understand what I am going through, and have been doing their own research, to talk to and share ideas with.

However, it sucks to watch them get better. Not for them, obviously, I’m overjoyed for them…but for me it sucks.

I have a very close friend; my age range, diagnosed just a few weeks before me, sick for quite a while (but maybe not as sick, or for as long as I have been)…who after pretty close to the same amount of time treating is in the gym working out, going out and partying, feeling better. We see the same doctor, therefore have pretty similar treatment protocols…but he’s better and I’m most definitely NOT. 

I’m so extremely happy for him. But damn…

I know, I know…”everyone is different, you can’t compare…blah blah blah”. I don’t care. I care, just not tonight. 

I’m sick. It royally fucking sucks. I’m not sure if I’m ever going to get better. So yeah, I’m jealous.

 

I’ve been doing a lot of thinking lately about what I want to do with my life, who I want to be; and while I am excited about where I think my instinct is leading me, I find myself insanely jealous of people who can just make these decisions without having to worry if their brain will be too foggy to pass classes/exams, or their body will be too weak to withstand that internship, or whether they will end up too disabled to be able to actually have a career at all.

That makes me angry.

 

Alright, I’m done. It may be safe to say that the antibiotics induced mood swings are back :[

Check back tomorrow or the next day for a post on a new treatment I am trying tomorrow! :]

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Since I live to please…a picture of my new “do” :)

Before…

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After… 🙂 (but please pardon my lack of make up lol)

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June 19, 2014 · 2:31 pm

Hooray for wigs and new beginnings!

I did it.

I said I wouldn’t, but I did.

I got a hair cut.

I know, I know, big deal, right? It’s just a hair cut.

Except it’s not just a hair cut…for a handful of reasons.

First, I have can count the number of hair cuts I have gotten in the last 5 years on one hand and have fingers to spare.

Second, my head is significantly lighter now…10 inches lighter, to be exact.

Third, those 10 inches will now be made into a wig for a child fighting cancer. ❤ This is a big deal for me as my aunt is a breast cancer survivor and I remember her struggle to find a wig that made her feel comfortable.

Fourth, it means something.

 

About a week before my ex-husband and I started dating I chopped off all of my hair. I don’t know why, just felt like it I guess. Well, he was upset…he told me I shouldn’t do that again because he liked my hair long. So I didn’t. Don’t get me wrong, I know that makes him sound controlling and he really wasn’t; I actually liked my hair long anyway, and I wanted him to like how I looked (what girlfriend/wife doesn’t?). So I haven’t had a real hair cut since then.

So the other day when the urge to chop it off struck me (it does that periodically), I just got a hair cut. Simple as that. For once I just made a decision without stopping to think what he, or anyone else would think about it.

It’s really quite freeing to just make decisions, without worrying about how it will affect someone else or what anyone will think (wow, getting a little deep here…it’s just a hair cut…or is there more on my mind tonight than just hair?)

Hair cuts have always felt like new beginnings to me; a new style, a new way of doing it every day, maybe even a new color! (Still contemplating that one…)

I feel like I just cut off the last 5 years of relationship…and the new grows now will be me, and only me.

 

Plus there are definite perks to this short hair thing:

1. Uhm, it’s suffocatingly HOT outside…enough said

2. I actually feel like I can safely manage to wash it all by myself, even on bad days (thank goodness for shower chairs too!). That used to be one of the things that I had to have help with when I was very sick.

3. I can actually hold my arms up long enough to style it, most days. Feeling like I am pretty is soooo important for my mental, and therefore physical, health.

4. A lot of it was falling out anyway…and it’s much less annoying to lose hair when it’s short.

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By loving I am staying alive…

“Here I am, rumbling along in my pigpen of emotions, lost on my sofa for eons now, feeling inadequate in so many vital ways. I’ve lost a sense of myself. It’s unnerving to feel adrift and unmoored from the natural grounding forces of my work, marriage and society. Many hours waffle by where I am reeling in confusion… Loving is about all I have left that I can do. Or so it seems. Patiently, I listen to all that goes on in their days. I listen to what is in their hearts and on their minds. This I can do readily and in peace… By loving I am staying alive… If I can’t trust that I’ll get well, if I can’t trust that I’m a valid person by the mere fact of just being me, at least I can trust that I’m still good at loving.” -Out of the Woods, by Katina Makris Pg. 131

I have been reading this book for a month now, and I’m only halfway through. Partly due to how foggy and full of cotton my brain has been lately, I find it almost impossible to read most days and end up just setting the book down and staring at the wall instead; but also partly because it has been a very tough book for me to read.

The book chronicles the authors battle with chronic Lyme disease, and is so well written that it is physically painful for me to read at times. I’ve been there. I’ve felt that. I remember how much that hurts. I feel that way right now. I am all too familiar with that dark, fearful despair. I know that hopelessness.

I feel as though I am feeling every pain and emotion through the pages of the book. Don’t get me wrong, it’s a wonderful book, and I think anyone who knows someone with Lyme disease should read it, as the author does such an amazing job of painting the picture of just how isolating and hopeless and scary this disease is. But be forewarned, if you are ill yourself, it’s tough.

For some reason this passage got to me, in both a happy and a sad way. It says exactly how I feel, only much more eloquently than I could ever say it.

I don’t know who or what I am. I don’t know what I’m doing with my life. I don’t know if I’ll ever get well. I don’t know if I even exist outside of this disease. But I do know that I am good at loving .

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Dear antibiotics; I think we need a break…

It has been 10 weeks now since I was diagnosed with lyme disease and began treatment, so here’s an update.

At the beginning I herxed a little from the antibiotics, very normal albeit unpleasant. It passed quickly each time and wasn’t anything I couldn’t cope with. Then things started falling apart, I started falling apart.

I had bipolar mood swings despite being well “stabilized” on my meds , the worst acne I’ve ever had in my life, the worst insomnia I’ve ever had, pain, blood pooling, heart palpitations, pre-syncope (almost passing out), and major major fatigue, SO much fatigue and weakness that there were many days where I could barely walk! None of these were new symptoms for me, just much much worse than usual or rearing their ugly heads when I hadn’t had to deal with them in a long time.

I’ll admit, I freaked a little. I knew it would be hard, I knew what I was getting into, but this was not it!

So I talked to friends who have been doing this a lot longer than I have, and ran in to my doctor at a fundraiser and mentioned it to her (and showed her, since that day I couldn’t walk more than a few steps at a time!), and every one agreed that I should take a break from my antibiotics. I really didn’t want to, so I debated for a few weeks, until I finally made up my mind to try it.

What convinced me was that I kept saying “if I knew this was herxing I could cope with it a lot better, but I don’t think it is” and a friend finally said “just take a break from the antibiotics, if things get better then you know it’s herxing!”.

So after 11 days off, I think my verdict is this:

Mood swings = herxing

Blood pooling, pre-syncope, palpitations = yet to be determined condition (undergoing a million different tests over the next couple of weeks, so we shall see)

Insomnia = lyme symptom but doesn’t seem to be related to antibiotics. However it does seem to be retreating with help from some supplements my doctor suggested :]

Pain, fatigue, weakness and walking problems = typical ME crap, perhaps maybe made a little worse by herxing. I haven’t had any trouble walking since being off of antibiotics, but it comes and goes, so that’s inconclusive. :/

Over the days off of antibiotics, my pain was off the charts…I find that an interesting tidbit of info, that I’m not really sure what it means yet, but after 2 days back ON antibiotics it is not any better. :[

Interesting as all of that is, I still don’t really have an answer; and now I’m scared starting antibiotics again that it’s only a matter of time before I’m getting worse again.

I have learned over the many years that I have been sick, and especially recently, to trust my instincts. I know my body, better than anyone else, and when my instincts talk I listen. Right now, my instincts are screaming that something isn’t right…I just have to figure out what it is.

There is a missing puzzle piece, or maybe several, and until I figure it out I think I am going to continue to have problems.

I am so tired of worrying about this.

 

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You are magical.

You are magical.

“So you don’t have the luxury of ever (ever) saying that there’s nothing magical in those bones of yours.

You don’t get to say that you’re boring or plain or weak or pathetic.

You are the universe. You are star-stuff.

And there is nothing more miraculous than that.”

A little positivity after my pity party…

 

http://www.elephantjournal.com/2013/10/the-world-may-be-heavy/

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June 10, 2014 · 11:23 pm

Pity party time

I don’t do this often, but tonight I am going to let myself.

This sucks.

I’m sick of feeling this way.
I’m sick of spending my evenings boiling coffee (see here for an explanation of that statement) and taking pills instead of out doing fun things like people my age should be.
I’m sick of spending more time in doctors offices than I do with my family (my ex husband used to hate that).
I’m sick of the pain. So much pain I don’t have words to describe it. The best I can do is brain numbing, gut wrenching, cant think about anything else, pain. It makes me want to cry, and throw up, and lay down right where i am and curl up in the fetal position and die. <—- I’m sick of that.
I’m sick of my body tic-ing uncontrollably, at the most inconvenient times.
I’m sick of worrying.
I’m sick of being scared to go on with my life; sick of doubting my abilities to do what I want to do.

I’m just sick, and tired; and sick and tired of it all.

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Bed time thoughts

I did it.

Last night I slept in “our” bed, alone…for the first time.

The nice, king size one, that it was his idea to buy for me because it would help my pain. The one with the two, husband and wife sized, indents in it. The one where I lay as I sweated and shook from withdrawal. The one where we talked, and laughed, and argued. Where we watched The Colbert Report together every single night, and where he insisted on watching The Price Is Right every single morning, even though that show drives me nuts. Where he used to stay awake playing video games, and take embarrassing pictures of how I was sleeping. Where I spent hours laying, staring at the ceiling, feeling like I was dying and convinced I was. Where he gave me many, many back massages. Where we ate countless meals, and satisfied random middle of the night cravings for things like pickles and scrambled eggs. 

We spent most of our life in bed.

Most of the end of our marriage in this bed.  

But I did it. I slept here, and I didn’t even cry…barely

I’ve been told this is one of those things that gets easier. I hope so.

I hope one day soon I won’t have to remind myself that I don’t have to lay on “my” side. That I won’t roll over and smell the essence of him lingering. That feeling the vast emptiness that is this bed, and my life, won’t make me sad anymore.

But really…who knows…

For now, I’ll just make jokes…

Ways to know if your bed is too big for only 1 person:

You have to roll over twice to reach the snooze button

You can pile half the bed full of all the books, papers, etc. you want and still have more than enough room to sleep.

You can practically make snow angels in your bedspread.

 

Time for night #2…goodnight friends. ❤

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