Save Laurens Heart

It’s back. The pain under my left rib. In true form, it disappeared for about a week and a half and it snuck back into the mix slowly the past couple of days. I was awake all night last night thinking about this pain: what could it be? Where is it? What organ is hurting exactly? My heart? My stomach? I was spinning all night long. I am in this all too familiar state of wired slash overtired slash jumpy. My eyes feel pinned open yet I can barely pick up my feet from the ground. I need to get to the bottom of this pain. It is scaring me big time.

Haven’t felt like writing much.  Mostly because I don’t like to spread the negativity when I am feeling down and particularly “icky”.

I haven’t been feeling physically well the past week.  I am having a reaction to a new medicine I started about two weeks ago, and I am trying so hard to just get through this bad part.  I wake up naush, battle waves of naush throughout the day, and go to bed naush. The headaches are terrible.  They feel like wicked hangover headaches that would only be cured with greasy food (only I didn’t get to enjoy sipping on some red vino the night before). Then, I lie awake and worry about what might happen next.  It’s been rough, but I’m hoping this funk is nearing its end.  I just ride it out, I expect times like this. After all, it was a pretty traumatic year.  This is one of the many ways we recover.  My mind has to catch up to my body… and I will be patient with it (and by patient I mean screaming into pillows periodically).

This got me to reflecting on the past year and wow I would NOT be able to really get into now, but last year at this time I was in a bad bad place.  I basically didn’t move from bed. I didn’t feel anything, no emotions, NUMB. I just remember waking up in terror —completely scared that I would die in my sleep (this was before the Kicker was implanted).  All I wanted was answers and I wanted it all fixed as soon as possible.  I get the chills just thinking about being carried to the bathroom, and needing to be walked and watched in the shower (fainting and losing my vertical hold on the world was common). I’m just feeling really humbled lately at how far I’ve come (although the terror is always there: in the background of my mind, in every flutter of my heart, in every ache and pain).

While the amazingness of my crew around me kept me going strong in cleveland and beyond, it was the fundrager this past June that really got me committed to this promise of getting better.  To honor my body by making this my full-time job, to do anything it would take.  And luckily, the fundrager made this possible.

How blessed I am that for a little while I have not had to worry about funds when I want to see a doctor and/or go to acupuncture every week (one of the few things that brings me physical relief).  My hospital and medical bills are ridiculous; astronomical!  But the fundrager eased my worries and helped me concentrate on the present. On getting better NOW and then dealing with all this other stuff.  I am constantly thinking of the many many people who are still contributing to my wellness and to my strong, fiery will to get better (I will absolutely be 100% and illness free with a sparkly heart).  Whether it was $10, $5, or $500, or the occassional kind words in an email, every single cent of it has gone to my cause —and I am living proof that when people care, the results are stunning.

I am very much aware that I would not be where I am today if not for the people who took the time to support me.  And I mean simple things, like getting out of bed and walking every day.  It was that bad.  The yoga has helped with my joints and muscles so I can move again: it used to be tremendous work to even hold my head up (that’s how dunzo my neck muscles were), and now I feel stronger. My fingers and toes were constantly numb and tingly and now, less often.  I could barely eat meals, my stomach was a mess, I lost about 25 lbs and now I am on a steady diet thanks to acupuncture and mayan abdominal massage, and of course, my lovely diet.  I can see changes in my body. I am eating again!

These thoughts keep me going through the rough patches like my recent ones. It keeps me on my path.  And I am not just talking about money here, I am talking about the thought behind it.  The simple idea of helping another human being selflessly.  How amazing we can be when something touches our lives.  I keep these smiles with me as I put my head down and attempt to rest despite the nauseau that takes over my entire body (it’s such a gross feeling).

Here’s to sweet dreams, or none at all would be nice for a change (I don’t really have nice dreams).

Sleep, please don’t be too far away…

Last night I was well on my way to one of those awful, mysterious attacks I get with my stomach.  Awake for hours pacing, then fetal position, then back to pacing, I finally had to make a decision.  Was I going to let this get to the point of no return or reach for the diesel “in case of emergency” painkillers my docs prescribed for these situations.

No longer able to deal with any sort of pain, I decided to go for the painkillers at 4am.  I have never injected myself with anything before so that was quite the mind trip.  Finally I just did it, BAM! Needle right into the fattiest part of my stomach that I managed to grab and pinch upward hoping to numb the actual needle itself.  As the glorious liquid made itself into my bloodstream the feeling of relief was unbelievable.  So crazy what these drugs can do for you.  I am so grateful that I have this as a reserve for when bad stuff goes down.  It made me feel safe.  In a story without these heavy duty painkillers I would have wound up in an awful ER writhing in pain for hours trying to explain a most confusing, rare, and mysterious condition to tired doctors that do not know me.

After it kicked in I was finally able to lie down flat in my bed and eventually fell asleep.  I woke 12 hours later with the most consecutive sleep in weeks and bliss on my face.  I was still in pain, and a bit sore and naush, but nothing compared to past episodes.  I was saved by my injection and I was so grateful to have something in my pocket to deal with a problem that has long plagued me. Felt great.

Then, of course I was scared to eat again today.  It messes with my head so much. I am so fearful of pain that I am terrified to eat.

I cannot put into words how very happy I am that I avoided the hospital.  To me, that would be the worst possible thing for me at this point.  I shudder at the thought of being at the mercy of an ER.

Sleepy now.

Good night.

No word back on the tests yet.  I will probably have results from Columbia mid week.  Waiting is always a messed up part of this whole thing.  It can really play with your head.  It’s the worst!! AAHHHH!

It’s ok, because I know I am getting better. So I can wait because I know it will be really good news.  It has to be.

So, I don’t really sleep anymore.  At least that’s what it seems like.  The past two weeks have been especially bad. I don’t sleep for more than a couple of hours a night. Literally two hours.  I watch the sun come up.  I listen to the early morning sounds of the street cleaners and I count the first couple of steps on the sidewalk in front. It’s maddening.

Last night I couldn’t take it anymore so I took some meds (anti-anxiety) to finally get some rest.  I hate reaching for them because it’s one more med in my body but it had to be done. The same goes for painkillers. So, I am wide awake as usual at 3am.  The only difference tonight is that I am sitting here hunched over in pain.

My stomach has been feeling pretty good.  If I do say so myself, I have been amazing at keeping my diet (I hate calling it a diet because that implies losing weight and let me be clear:  I want to gain weight, please)!  So, here I am, eating boring meals to prevent my stomach episodes and when they start up I get totally annoyed.  I start to think about why and I truly don’t understand how things can go wrong if I am putting so much effort into prevention.  It always surprises me.

The most important thing is that the pain does not reach another level so I will continue to sit here, drink my magical tea (my acupuncturist is also an herbalist), and hug my water bottle (filled with scolding water).  Sigh.

I’m going to watch something funny on tv in hopes of distraction.

Now waiting to get blood taken. Been here for hours already. I want a shower and tons of vitamin C.