Monthly Archives: January 2010

Starting over every single day

Posted on
Reply

Haven’t really felt like writing in the past few days because it’s been a whole lot of the same thing:  one day I feel good, the next I am in pain.  And so has been the case for days now.  There is no reason for it, I’ve given up on trying to figure out why I have bone crushing pain one day and can walk around just fine the next.  I’ve tried everything in my arsenal from serious painkillers to exercises my pain therapist taught me, to yoga, to visualizations to meditations.  Whether the relief comes hours or minutes at a time it gets harder every time it returns.

I am feeling a little down but mostly anxious.  I have a big appointment at Columbia with my heart failure/ heart transplant doctor.  I haven’t seen her in a few months so we are going to figure out a plan of action:  schedule tests to see if my leaky valve has progressed at all, check out the situation in there, and make a decision as to whether or not I will need this open heart surgery sooner or later.  I don’t know how I feel about any of this other than I don’t want to deal right now.  I don’t really want to think about it.  I have an extra edge of anxiety because I’m feeling short of breath lately –more so than I’ve ever felt it before.  Not cool.

Since I have been in so much pain I thought it would be a good time to start the 29 Gifts where you give 29 gifts in 29 days.  I had secretly already started it about two weeks ago but the pain distracted me and I found myself in my head all over again.  One of the rules of the 29 gifts is that if you miss a day you have to start over at Day 1 and start giving again.  I’ve made a conscious go at the whole thing again and it’s harder than I thought.  It’s hard to do anything with the piercing white noise of pain as the background soundtrack to everything you do. I did find that it helps me when I wake up in the morning to concentrate on something like “what gift am I going to give today?” rather than immersing myself in “how can I do anything when I feel so awful?”

Today so far the pain isn’t so bad.  This is coming off of a day in bed unable to do anything at all yesterday.

Insomniac

Posted on
1

Sometimes I don’t go to sleep because I cannot (despite feeling exhausted). Thoughts that race through my mind keep me awake and staring at the ceiling until the sun comes up.  It’s torture.

Sometimes I don’t go to bed and rest my body purposely because I am afraid of the bad dreams I’ll have.  There are phases I go through where my dreams are so incredibly real and terrifying that I actually avoid sleeping so I won’t have to experience them.  This isn’t so bad, I find something to do during the night and keep busy. Anything besides waking up in a sweaty panic.

Then there are nights like this one.  Nights when there are so many emotions and so much information to process.  It’s overwhelming.  This happens every few weeks, I download my recent experiences and it all feels so… HEAVY.  There’s always something new to accept or an obstacle to overcome mentally just to get through the day (most recently it’s been all about heart stuff again.  I’m so afraid of my defibrillator firing).   Instead of shutting down I seem to do the opposite.  I am wired… like I can stay awake for days thinking, reading, researching, planning, figuring out my next steps.  How do I get better?  How do I fix my heart?  It’s an obsession.

I’ll surely see the sun rise this morning.  I’ll fall asleep to people starting their days, heels on the pavement, squeaky brakes of the garbage trucks, kids going to school.  And I’ll wish that when I wake up everything is better.  Like magic my heart works!  Every time I close my eyes I’ll never stop wishing for that.

If I really believe in this it has to come true…  Right?

ICD Clinic at Columbia Presbyterian

Posted on
Reply

Yesterday I headed up to Columbia to the ICD Clinic.

The Clinic is where my pacemaker defibrillator gets a check up.  I am supposed to go every four months but this time I put it off way too long and it wound up being eight months since my last appointment!

It’s not my most favorite thing to sit through.  Basically a nurse tech interrogates my device by going into my pacemaker defibrillator through a special computer.  This always freaks me out big time.  While in the “system” as I like to call it, the nurse creates a print out of all of my data since the last interrogation and then checks my leads.  This is where I get queasy.  I have three leads (wires) so she takes the time to test each one by bringing the wire up to a certain intensity and then back down again.  You can feel each chamber of the heart speeding up as she tests it and then going back to normal.  I’ll never get used to feeling my heart beat fast (as if I were running) while I’m lying on my back.  Creepy.

Up until now there has never been an episode recorded.  Thankfully, I haven’t been shocked (you are shocked if you have an arrhythmia or if my heart beat goes above 180), but my device records all episodes where my heart goes above 150 and there were a bunch this time!  Confusing for someone who doesn’t workout or climb stairs.  There was also one tiny “blip” as they called it.  This I did not like … I had a “bad rhythm” for 2 seconds.  Scary because if it happened for 8 seconds longer I would’ve been shocked.  A huge fear of mine.

I asked to have my own copy so I could study exactly when these episodes happened.  The technology is so incredible it actually can tell you the exact day, time, and for how long these episodes occur:

The crazy arrhythmia is the very first one at the top.  Then, you can see as you go down the list how fast my heart was beating at different times it was recorded.  162 is really high.

I’ve combed through the list.  I wanted to see what I was doing during each episode.  I can see a lot happen between midnight and 2 am which confirms all of the times I wake up in a panic with my heart racing.  It actually wakes me out of a deep sleep.  Anxiety? Is it something else?

One thing is for sure, this has really messed with my head.  I know it isn’t logical but now I am scared to exert myself.  I feel like it will bring on an episode.  I think of how often I’ve been driving by myself lately and it’s so hard to continue doing so with this information.  I can’t even get my mind together to go to yoga tomorrow as planned.  This is just a big deal to me and it’s setting me back right now.  I feel scared and I really don’t want to.

I just wish my heart was protected.  I wish it to be strong and safe and episode-free.  I also wish this flood of emotions will dull down.  It only takes a little thing like this to work me up again.

Thanks Dee for coming with me xoxo

I Rode the Subway!

Posted on
2

After Tuesday’s yoga setback I was feeling adventurous yesterday.

Although I was still feeling a bit run-down T and I were headed out for the day and he suggested we take the subway since we were together.  It’s been over two years since I have taken the subway.  I jumped at the chance.

Two years ago when I was fainting all over Manhattan I felt trapped down in the subway many times.  Aside from the fear of “white-ing out” underground and having to find my way to street level for help or fainting amongst strangers, the subway stairs have proven to be too diffiult for too long now.  Many days I have to make choices as to what I will spend my energy on.  Will I attempt subway stairs today or do I want to be able to run some errands or cook dinner?  Do I want to wash my hair or should I save my energy for some doctor appointment I have or should I clean ?  It’s ongoing.   Now that the bad days are occurring less and less I am doing more and more.  I couldn’t wait to try the subway with T by my side and again later in the day while I was with my sister.

It felt amazing.  Really great.  I had to stop a couple of times on the way up the stairs.  I still don’t feel confident enough to do it on my own but I’m definitely getting there.

At the end of the day my legs were aching from my subway adventure but it was so satisfying to know they were aching for a great reason.

Staying Focused

Posted on
Reply

After my post about yoga I was so set for Tuesday afternoon!

Well, my body had other plans.  I felt absolutely awful, it was one of those days where everything hurt. Bad.

I couldn’t imagine moving far from bed so attending a yoga class wasn’t a realistic goal for the day.  I am  getting better at accepting the bad days so for once I didn’t dwell on the fact that I couldn’t do what I wanted.  I’m getting better at it.  Head up, move on.

I’m going to try again the end of the week.  Hoping my body is up for it then.

Small Victories

Posted on
1

In the short time of a weekend I managed to feel both well and amazing and high, and gross and nauseous and low.  For some reason I’ve felt sick the past couple of days, not sure why.  Then again, we never really know why.  It could always be a plethora of possibilities so I just try to deal and not think to much about it.

But let’s talk about the good part.  For the first time in over two years I went and took a yoga class this past Friday.  My body was feeling able and  ready. I felt so incredibly proud of myself afterward I couldn’t stop smiling.  It’s been a long time since I’ve felt that way and I’ve missed it.

Let me explain why this is such a big deal.  The first reason being the background fear I live with every day that my heart may go cookoo bananas  and set my defibrillator off.  My fear increases at the thought of doing something athletic, aerobic, or exerting.  This fear stems from a few things but mainly from the fact that I am told by cardiologists I cannot do any aerobic working out –cardio in particular.  Swimming is ok but let’s get real, I live in NYC.  I am also “allowed” to bike but only if I keep a close watch on my heart rate and keep it under 125.  No thanks… too much to think about at a time when you’re supposed to be clearing your mind.

So, in the past I’ve done yoga.  Stretchy sleepy slow restorative yoga.  For a while I had a lovely yoga teacher who came to my house once a week and did restorative poses with me for an hour and a half.  The restorative yoga worked magic over one year as it got me from a very frail, weak body to one that I felt strong and more comfortable in. It also helped me adjust to the metal box protruding from my bony chest and re-introduced me to my body after all the trauma it had been through. The breathing and stretching was so healing, and although I had to stop the one-on-one lessons (muy expensivo) I still practice what I learned on my own.

Yet lately I’ve been looking for that yummy physical outlet.  Somewhere I can go and move my body for a long period of time.  I had been thinking about a class for some time now and always let my nerves get the best of me.  I was a wreck to go on my own … what if I collapsed in this place filled with strangers?  What if I feel faint and can’t get home quick enough?  How will I feel when I see that I cannot keep up? Completely messing with my own mind.

Finally I kicked the “what-ifs” and got my butt to a class near to my apartment.  I felt so anxious and thought about turning around twice but trooped on.

It was a beginner class.  The second I stood there I had to face a lot of “Lauren” stuff.  Like, who I am at the very core.  I felt crazy competitive.  I wanted to be the best in the class, do everything perfect and hold every pose super long and hear “great job Lauren!”  But, chill out L , this class isn’t about that.  It’s about small victories and only looking inside myself, not around the room.  I decided to just close my eyes for most of it and concentrate.

I was only physically capable of doing a little less than 1/3 of the hour and fifteen minute class.  For the poses I couldn’t maintain, and the repetitions I couldn’t endure I just sat on my mat in a comfortable pose, a stretch, or quietly meditated on my breath. It was a tough realization to see that my body wasn’t capable of so much in comparison to others my age (and much older) .  Each time I couldn’t do something I thought about rolling up my mat and leaving. I had that moment of feeling lame,  but I would immediately change the Debbie Downer attitude and something would make me stay.

I am so happy I did stay.  The end of the class brought a huge sense of accomplishment.  The teacher was cool, I told her a little bit about my situation at the start.  She said she was so so glad I stayed, and that it was a great thing to come and be in a class environment –that I would feed off the energy in the room.  I do agree and I am attempting my second class today.   I still get anxious but now I’m determined to keep going until I can do the entire class.

I love a goal.

Icy – Scleroderma and the Cold

Posted on
2

This body of mine is not built for the cold.

For the past couple of weeks I can’t stop talking about the weather.  I’m even get sick of hearing myself!  But I just cannot believe how cold I get.  Due to my Scleroderma, I do not have good circulation.  Among my symptoms of the disease is something called Raynaud’s.  My left middle finger turns blue and my toes turn into white popsicles when in the cold.  Yesterday I spent the entire day trying to keep warm.  I had leggings, jeans, serious antarctic socks, toe warmers, and many layers yet still a short walk in the cold left me shivering for hours.

I definitely wouldn’t last without these babies.  I just stocked up on these toasty stick-ons.  I highly recommend them for anyone walking around with cold feet.

A Terrible Dream

Posted on
Reply

I’ve always been fascinated by dreams.  Especially my dreams which have always seemed to be more like epic movies.  I dream so vividly, the colors, the story lines, everything is so elaborate.  I try and write down anything I remember when I first wake up so I could make sense of it later.
This morning I woke up terrified.  I had just experienced the most intense, long, twisted awful dream ever.  I kid you not, this was a proper movie.  There was a story, characters, and it was dark.  I can’t even bring myself to tell T about it in detail because I just don’t even want to talk about it.  I had to lie in bed for a good 45 minutes until I felt safe, until I realized that it was in fact, only a dream.

I am sure there can be many reasons why, but I feel so weirded out that my brain produced something like this. Like, what could possibly be going on in there?  I especially hate when this type of dream includes all of my loved ones.  Needless to say, I did not have a very restful sleep and I am really down today.  My disturbing dream actually made me sad.  I feel like I’m still dreaming.

Trying to shake it off now with a walk.

Chinese Medicine: Acupuncture and Cupping

Posted on
Reply

I keep up my acupuncture appointments once a week because they bring me such relief.  Yesterday I went to my acupuncturist with the usual complaints:  anxiety, aches, pains, fatigue, terrible back pain, and I told her I felt like I was getting a cold.  She told me we would do something new today.  Something called cupping.

“It is said to improve the circulation in the body by opening the lungs up and drawing the toxins away from them and toward the skin’s surface.

Cupping draws out Wind, Cold and Damp according to traditional Chinese philosophy. Studies are beginning to show that Chinese medicine cupping can be used to treat a variety of very different ailments, including swelling, asthma, edema, dull aches, pains, bronchitis, arthritis, stomach ache, abdominal pain, headache, indigestion, painful menstruation, lower back pain, coughs and a lot more.”

Do not let the bruises fool you, it felt amazing!  Relief!  I asked why haven’t we ever done this in the year and a half I’ve been coming here?  It felt like getting a massage and being vacuumed at the same time.  It brought great relief to the tense muscles in my back and sure enough, it drew out my cold just as she said it would.

I wouldn’t mind doing this once a week.  I am still sore but that “good sore” you feel after a deep tissue massage.