Tag Archives: hope

I Rode the Subway!

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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.

Small Victories

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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.

Rheumatologist today

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Off to an appointment with my new Rheumatologist Dr. B.

There is a controversial decision that I am about to make and hopefully today will help.  So far, I’ve spoken to all of my trusted doctors and healers and they seem to be 50/50 on the subject of using antibiotics (minocycline) as a cure/ control for Scleroderma and autoimmune diseases.

The theory is best explained here Roadback.org

It is an interesting theory and out of my desperation I will try anything to get rid of illness and disease in my body.  I am not sure what my gut feeling says anymore, it’s a battle between knowing there probably isn’t a quick fix to anything health related and wanting to be better… taking a pill and BAM it’s gone!  I want to believe that but after speaking with my Osteopath yesterday he made a good case to stay away from months of antibiotic therapy.

I’m so confused.  It’s so hard to make decisions when there are no answers.  I want to be patient as Dr. V (my Osteopath) advised me yesterday.  He says he believes I will make a full recovery, that I’m in the process of doing so,  but it’s up to my body to decide how long this will take.  Patience is hard however when you feel stuck and you’re wondering when this will end.  I always like to think I’ve tried everything I possibly can…

At this moment I am leaning away from the antibiotics.  Something about it doesn’t seem to be “right” for me.

Prepping for a big doctor appointment tomorrow

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I tremble
They’re gonna eat me alive
If I stumble
They’re gonna eat me alive

Can you hear my heart beating like a hammer?
Beating like a hammer?
Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft
Tough to be tender

Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps beating like a hammer
Beating like a hammer

If you’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart still beats…
Beating like a hammer
Beating like a hammer

Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft
Tough to be tender

Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps
Beating like a hammer
Beating like a hammer

If you’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart still beats…
Beating like a hammer
Beating like a hammer
Beating like a hammer
Beating like a hammer

Help, I’m alive, my heart keeps beating like a hammer

29 Gifts

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To counteract my gloomy post of this morning I wanted to share this.

This book was sent to me recently, and I read it within one day.  It really spoke to me because I honestly could’ve written it.  There were many similarities between the author and myself.  It’s a story of a woman’s struggle with her diagnosis of MS and the amazing way she has changed her life.

The book is based on a prescription the author’s spiritual advisor gave to her one day when she called in pain and desperation looking for help.  It was to give 29 gifts in 29 days.  The rest is a beautiful story of healing and self-empowerment.

Visit the website for the book here.  You’ll be so happy you did.

Thank you to the lovely Stephanie Jeanne

I’m starting my 29 Days of Giving next week.  This week is filled with doctor appointments so I’ve decided to begin my giving at a time when my brain is usually spinning out of control … after seeing tons of docs.  I can’t wait to start. I really love giving gifts.

Lauren’s List of Incredible Sadness

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Hard day today.  I’m posting this tomorrow (Tuesday) morning in hopes that as you read this I am better and it has passed –like a bad dream.

I’m taking a risk here, this is super personal stuff (even more personal than talking about colonics).

Some days it all catches up to me.  Some days I feel so sad for everything that has happened and I can cry the whole day long. Today was one of those days.

I spend so much time moving forward in battle mode and pushing through the obstacles I forget to take the time to be sad.  I stay positive because I convince myself it will all be ok, and I believe it will, but what about the last two years of my life?  I find myself mourning the time lost to illness… I didn’t choose any of this and it all happened so fast that in many ways my brain and body are still trying to be the new me; the me that was shaped out of trauma and illness…

Lauren’s list of incredible sadness (it helps to get it out):

1. What about all the things I’ve had to give up?

2. The sacrifices I’ve been forced to make?

3. What am I possibly gaining from this?

4. What did I ever do to deserve this?

5. How do you get your youth back?

6. Am I making the right decisions?

7.  So many relationships that crumbled because of this…

8.  I can’t remember the last time I laughed so hard I cried.

9.  I can’t remember the last time I truly had fun without health concerns drowning out the moment in the back of my brain.

10. When will these difficult times end?

The sadness turns to frustration and anger… I am doing everything RIGHT!  I am doing it all, I am eating things I despise, I am going to doctors and specialists, I stay home and rest when I’d rather be working all day and going to parties all night in ridiculously high heeled boots.

Lauren’s list of incredible anger (also helps to get it out):

1. It’s hard every single time I say no to an invite out with friends or family (what if they forget about me)?

2. Where did the last two years go?

3. Holy shit, I’ve turned into a senior citizen.

4. The medicines have caused me more harm than helped me.

5. Most* doctors are not to be trusted.

6. You are treated horribly in just about every NYC hospital.

7.  You are treated like you are going to break (physically and mentally) by everyone around you.  You start to feel crazy.

8. Autoimmune disease is no explanation for what I experience.  You can’t put a name on this nonsense.

9.  No one will ever TRULY understand what I go through.  It’s lonely.

10. The fear that it will progress… I feel so helpless.

Ah, it feels good to write it all here. I may regret writing this but I might also help some people out.  People who may be going through something similar.  You aren’t alone if that’s you.

Now I’ll go to bed and I’ll think of the people I love and I’ll get up tomorrow and get back into the fight.

Little LDV.  So innocent and carefree.  How do I get it back?

Trauma

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I have been meditating a lot on this idea of TRAUMA lately.  I’m certainly affected by everything that’s happened but the trauma… well that is the gift that keeps on giving.  When I knock out one obstacle there always seems to be a new and exciting one waiting for me.  I’m not complaining here, more like marveling at the layers upon layers of the human psyche that are affected by events in our lives.  We humans are pretty incredible.

Trauma is also what’s kept me away from writing.  I’m stuck.  In a funk.  Sad and frustrated.  I get like this when I’m overwhelmed with information.  Two events have recently pushed my “trauma” button that made all of my hard work to get to a “good” place seem useless.  When that button gets pushed I am right back to raw terrifying feelings.  I go back to fear and obsessing over small things like trying to find the exact moment the scarring started to suffocate my heart muscle.  “If I could just see the time, the place, the day, what I was doing….”  what then, Lauren?  Well, realistically nothing would be different.  Knowing is a control thing I guess.

It was clear that I was better in September.  I was so happy, full of confidence in my body again.  It didn’t take more than a sentence to crush me that day at my cardiologist. Actually, it didn’t take more than three words “open heart surgery”.  Button pushed.  The weeks since then have been tumultuous.  How does someone live when you know that’s looming?  Then, a new Rheumatologist last week.  Certain truths were brought to my attention and I felt so sad for myself. Mistakes that may have been made by certain other doctors in the past.  Mistakes that may have been avoided if I had just chose to see someone else or if I was just more in control at the time…  The button was pushed and this time I just felt so sad for my body.  For everything I’ve been through. For the doctors I’ve trusted that let me down.  This is one of those times I cried myself to sleep thinking “I didn’t do anything to deserve this. It’s so unfair”.

Maybe it’s better I don’t write when I’m like this.  I like to contain negativity not spread it.  Although I wouldn’t be telling the truth if I said I was always fine.  Trauma and sadness is a very real part of my life right now.

A Newer New Rheumatologist/ Take 5

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A constant subject here is my quest for a Rheumatologist.  I have had terrible experiences in the past with this particular breed of doctor and I find it is a very hard job to fill in my overall picture of health. I have lost trust in doctors because of some of these dudes.

You see, my illness is so rare that quite often these doctors guess and suggest medicines (many of them toxic) to treat the symptoms without ever fully grasping the weight of the underlying problem (in my opinion, of course).  I cannot tell you how many times I have made a decision to take a medication putting my trust and my health in the hands of a Rheumatologist only to see a different one cringe when I tell them about it.

It is a terrible feeling to find out that you were misguided, but worst of all to feel you are not taken seriously as I experienced when I was in severe heart failure and my Rheumatologist of six years brushed me off numerous times telling me it was “anxiety” (but that’s another story for another time).

This will be my fourth Rheumatologist that I visited two days ago.  I could tell from the start that he just “got it” –as much as anyone can “get” these diseases.  I felt I was able to have an intelligent conversation with him, he asked tons of smart questions, and seemed caring but totally business at the same time.  After I finished my 20 minute monologue of my health history, he is the only Rheumatologist to date that hasn’t looked at me with fear or intimidation or confusion in his eyes.  This makes me feel I am in capable hands at the very least.

I left there feeling optimistic but also quite upset.  I know I can’t do this to myself but I couldn’t help but wonder if I had found him sooner.  If it was him I was seeing for the past seven/ eight years… would he have prevented my heart from getting scarred?  Would he have put me on a path early on to proactively watch this aggressive illness?  I always felt I wasn’t “sick enough” for my other Rheumatologist to take me seriously.  I can’t help but wonder how things would be different.  It sucks.

It is also quite unsettling that he had a puzzling look on his face when I told him I was put on 60 mg of Prednisone (the Roids) last year and have since been tapering off (ended in September).  He could not believe my current doc had given me such an unbelievably high dose!

C’mon people.  This is my life!  I was a maniac mess on those steroids.  I can’t believe once again I was at the mercy of a doc who didn’t know what he was doing and just couldn’t admit it and hand me off to someone else.  Instead I was put at risk AGAIN.  Here’s hoping the new guy doesn’t disappoint.

He prescribed me new meds to take for the next two weeks for pain.  Let’s see how this goes.

Oh, did I mention he said my symptoms sound more like Fibromyalgia?  Nothing like getting a new diagnosis!  More on that to come…  my head is spinning.

No Limits

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Started to feel like a person again yesterday.  I had energy, and my body hurt only a little compared to what has been going on this previous week.  So what did I do?  I did everything I had been wanting to accomplish in the past week in one day.  I push my body to the limit!  Walked to the grocery store, went shopping, cooked, anything to prove to myself that I can still do things!

Paying for it now but it felt so so good.

In bed today.  Happily achy.