"...But You Don't Even Look Sick!"

The true meaning of these holidays

Thu, 24 Dec 2009 13:58:00 -0500

Soak up every minute you get to spend with your loved ones this time of year.

We always find ourselves caught up in every day life, we may get annoyed at small things, or family gatherings may bring anxiety for some… but at the end of the day anyone who has family (or friends you consider family) is incredibly lucky. I’ve heard those words since I was very young and I find that I’m amazed at the truth at the very core of this idea. The opportunity that family gives you to love and be loved unconditionally is the real gift to be thankful for.

Take this time to really get to know the people you love. Go passed the surface because this is what you’re made of. Soak in the time you have together. It will be the small things you remember most if they ever leave this earth before you. The way they laugh, things they don’t like, the way they smell, their mannerisms, the way you feel when you are around them…

Right now one of my most favorite people on this planet is in a hospital bed. It happened so fast. I’m not sure she knows it’s Christmas but I wish so badly I could sit down to a comforting meal tonight with her at the head of the table. From the outside she is my grandmother, but Gela is so much more to me. Always has been. I’m heartbroken but it’s bittersweet because I’ve spent this time thinking about everything she’s given me that I carry on as I grow into my own person living my own life. It doesn’t stop at stubborn, but that key trait is what kept me going even in the darkest hours of my illness and limitations.

I am very hopeful, and I truly believe that she will be ok. She has to be. She is so gangsta she will get through anything. I’m sending all of my love to her. I hope you can too.

Photo

Tue, 22 Dec 2009 15:33:23 -0500

Trauma

Tue, 15 Dec 2009 10:30:00 -0500

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

Thu, 10 Dec 2009 10:30:00 -0500

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.

Relief? Soon?

Tue, 08 Dec 2009 11:57:45 -0500

Acupuncture brought me the greatest relief yesterday. It was an intense session seeing I hadn’t been able to make it last week. My acupuncturist got to as many trigger points as possible and it hurt, but in that good way when you get a massage… you just know that this has to be releasing something “bad”.

I felt great lying on that table with all of those needles sticking out of my back. It was the most relief I had gotten through all of this —including the serious pain med that I take through injection.

Last night I was so beat from the treatment I went to bed at 9 pm. Unheard of for me. I slept the whole night.

I know something is working because I am insanely sore today. I am moving verrrry slow. I actually woke up in tears from the pain. Let’s see how the day goes…

I have an appointment with a(nother) new Rheumatologist today. I am preparing myself for the worst since all these guys are beyond disappointing. It’s interviewing someone to take care of you, watch your disease and take a proactive position. All the ones I’ve visited have been called ‘The Best” which in my opinion has come to mean nothing. Experience has shown that if they are in the New York’s Best Doctor’s annual issue stay away! Those are the worst ones.

Wish me luck.

No Limits

Sat, 05 Dec 2009 15:26:07 -0500

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.

quote-book: (by neilywheely) I stopped to re-post this quote...

Fri, 04 Dec 2009 11:00:00 -0500

quote-book:

(by neilywheely)

I stopped to re-post this quote because it is so valid in my life today.

One of the biggest struggles I find going through major health problems in your twenties is finding your place amongst your friends. Most 20-something year-olds aren’t faced with their own mortality, or deep fear, or the pain I’ve experienced over the past few years. I often have to remind myself that not only is it difficult for anyone to come to terms with an ill friend but sometimes they may say things just to fill the silence. Sometimes those things make it worse but you know they are saying it because they feel so utterly helpless and you love them for it. It’s happened so much that I can recognize the struggle on someone’s face when they try to find the words to console.

Most of the time though, I long for that understanding. The friends that have found acceptance in this unfair thing that’s happened to me are the ones that seem to be able to sit next to me in silence — no words, no sad face because they feel sorry for me, just a deeper understanding that yeah this SUCKS. They are right next to me and when there are no words there is silence and they can be comfortable with that. They are the ones that let me talk about what I am afraid of and just hold my hand. Yet, this can only happen after they have faced their own fears. Felt the feelings. Let themselves get sad or angry about what’s happening to their friend, what’s happening to their friendship with me.

I struggle every day to keep bonds with long time friends because the truth is I am not the same person and the dynamics of many friendships have changed due to that. I’ve had to grow up so fast… I have the mentality of a 70 year old and they have the luxury of being 27. That disconnect hurts a lot. I’ve lost friends because of it, I continue to question friendships because of it, I feel alone because of it.

Lately I’ve viewed this problem in a totally different way. I am only now realizing how hurt I am. I know that within this tough time I’ve given my friends (and family members) the opportunity to truly feel, to face the scary stuff, to tell me that they are scared or sad or angry, and many haven’t taken that opportunity. I have sadly watched many of them turn their backs to the problems and pretend everything will be fine. While I understand they aren’t doing this on purpose, I question why some are ready and why some continue to only scratch the surface of their feelings. It’s actually frustrating to watch. It’s a big mess.

I have learned to be my own best friend through this experience. I am learning to be patient with myself, love myself (scarred heart and pains and all), and just sit in silence when I am desperate for answers that do not exist.

Anyone going through something similar? I am curious to see how others in this situation deal with this. You can go here and leave a comment or email me. Many thanks

Stress Pain Stress Pain Stress

Thu, 03 Dec 2009 18:10:04 -0500

I’m sure it’s no coincidence that this major pain flare up has come a month or so into one of the most stressful times I’ve ever experienced. Yes, I am STILL in pain. It will be a week tomorrow that this heavy discomfort has terrorized my bones muscles and joints. They ache for relief. I do anything for an hour or even ten minutes of sweet relief.
Something about this decision, the entire mess of emotions that come with hearing I most likely have to get open heart surgery. It is one of my biggest fears… not just the surgery (oh man that surgery), but the fact that I was on a high. I felt amazing, coming off a summer of rebuilding and replenishing I was brand new and ready to start living fearlessly again! It was like the record stopped that day in my cardiologist’s office. I was aware how sad I became that day but I am only now realizing just how much damage was done. I’d been crushed. This again? So soon?

As has always been the case in the past I will do whatever it takes to keep my heart safe and working the best it can -scar tissue and all. I’ve been crushed before and I get up. I can do this, I know it. It’s the in-between that’s tricky. The waiting, the doctors, the lack of trust I have in doctors, the planning, the anticipation… will I be… OK? How do I know what the “right” decision is? This is my life… how do you even begin to make decisions like this? The thinking thinking thinking, the sleepless nights, the worries, the fears.

The questions, the waiting, the visions of hospital beds and operating rooms, I think they have all took to hiding in my muscles and joints. It feels like I’m carrying it all with me all the time. How do I just let go?

How do I deal with Chronic Pain?

Mon, 30 Nov 2009 14:22:30 -0500

Had to cancel acupuncture today. I usually drag myself there regardless of how I feel because my body responds so positively to each treatment. I have to be in a lot of pain to cancel last minute, wish I didn’t have to…

Now, to take a pill or to not take a pill and just lie here? Major decision.

I have many coping mechanisms I use for pain. I even see a psychiatrist that specializes in pain management for some time now… we work on things I can do instead of taking pain meds or sleep meds. I’ve equipped myself with many tools that just don’t seem to be working this time around. I can’t help but wonder why so much pain? And why now?

Pain Flare Up

Mon, 30 Nov 2009 13:35:54 -0500

On Thanksgiving I sat in a room filled with family, struggling to get through the day. I was looking forward to spending time with the people I love yet while I was there I couldn’t enjoy much. That morning I had woken up to major aches and pains all over my body. No explanation, it was just “there”. I finally took a Tramadol (painkiller) during dinner which took the edge off the pain but didn’t do much else besides make me shaky.

The thing about being in a public situation when you are dealing with this bone crushing pain is that you become exhausted from trying to just “be”. Every conversation, every hour is blurred by the piercing distraction of your body. Needless to say, my Turkey Day was not ideal. The next day (this past Friday) I was in bed all day. I took a seriously serious painkiller and surrendered, unable to mentally deal with the pain any longer. It gets to a point where you just can’t convince yourself anymore.

By the end of the weekend I was excellent! Walking around all day yesterday, I wanted to take full advantage of my working body. I got up early and spent the entire day walking walking walking. Cut to today, and that pain is back.

I write this from bed wondering if there will ever be a time where I don’t go through these ups and downs. Pain/ no pain. Energy/ no energy. Such an erratic way to live. When I am this desperate I consider going on the Prednisone again (steroids) although most of me believes that no amount of pain is worth the mental anguish those pills bring. Sure, your body feels better but you are a completely different person —typically of the unpleasant kind.

I feel worn. Wrecked. Ravaged. I am using this time in bed to make phone calls to different institutions to find out what they can do for my heart.

It’s a gloomy day in NYC.

From Friday

Mon, 30 Nov 2009 13:35:22 -0500

http://savelaurensheart.com/2009/11/25/refills-day-3/

Stem Cells and Scleroderma

Wed, 18 Nov 2009 15:04:00 -0500

In light of all this recent talk of open heart surgery I have become absolutely determined to find an adult stem cell treatment for my heart. My idea is to wait out the surgery for as long as I can and hope hope hope that there is a stem cell option to repair my scarred heart.

The idea is to treat the underlying problem if we could, rather than going in and sewing up a valve to repair it (even though the wall to which this valve is attached to is still thick and stiff with scar tissue). Repairing the valve is not going to fix my heart. I see it as a band aid. A very serious terrifying surgery for a band aid.

Stem cells on the other hand have the possibility to truly heal my heart. They create NEW tissue which could mean a potential for fading out the scar tissue that covers 70% of my heart muscle AND fixing the leaky valve in one swoop. Of course, it’s not as simple as I make it out to be…

For one, any stem cell treatment I’ve come across where they inject the new cells back into the heart has been controversial among my doctors. I haven’t gotten the green light from anyone to go through with these things. They tell me the technology is simply “not there yet”. C’mon technology! You have to get “there” because I’m so counting on this.

There is a new website dedicated to “educate and spread awareness about the potentials and successes of adult stem cell therapies.” I’ve been combing through since I came across this site at 9 am. They are even doing stem cell TRANSPLANTS for patients with Scleroderma! It can reset your immune system!

I am hopeful. Extremely hopeful. Now, if I could just find the right one for me and my ticker. It’s the one wish I make when I see my birthday on the digital clock, or a blow a loose eyelash from my fingertip, and right before I go to sleep at night and first thing I do when I wake in the morning. I just want an answer, to feel in control again.. something to DO to help this go away.

http://www.stemcellresearchfacts.org/

*Any information is always greatly appreciated. You can comment on this post at SaveLaurensHeart.com or email savelaurensheart@gmail.com

I know in some ways I am getting better. Little by little. I believe my illness is regressing. ...

Tue, 17 Nov 2009 11:11:45 -0500

I know in some ways I am getting better. Little by little. I believe my illness is regressing. I’ll have to spend some time repairing the disaster area it left behind after it ravaged my body but I’m up for the task.

Whatever I have to do to fix these things, especially my heart, I will do. Every ounce of me is willing to fix it all and move on to feeling healthy. To living my life.

I always think of my body when I listen to this song. It sounds silly but I picture this one a song my body would sing if it could.

Good times for a change
See, the luck I’ve had
Can make a good man
Turn bad

So please please please
Let me, let me, let me
Let me get what I want
This time

Haven’t had a dream in a long time
See, the life I’ve had
Can make a good man bad

So for once in my life
Let me get what I want
Lord knows, it would be the first time
Lord knows, it would be the first time

-The Smiths

Denial?

Mon, 16 Nov 2009 13:19:34 -0500

As you know, I have been spending a lot of time visiting my doctors the past several weeks in light of the newest heart situation.

I was upset last week when my cardiologist pointed out just how big a deal this leaky valve thing is. I chose not to dwell on it but the fact that it went from about a .5 in May to a 2+ or 3 now is troubling (4 is severe 4+ is immediate intervention). It’s no secret I’m scared and until then I never actually truly remotely considered going under the knife. Now, I’ve introduced it as a possibility in my brain.

Over the past several weeks whenever these docs ask if I have symptoms my answer is no. “I feel great!” I tell everyone. But last night I was shocked to realize that maybe I’m not so great… I spend so much time convincing myself that I am “OK” that it hurts to look at myself and realize maybe that’s not so true. Have I been in DENIAL?

I was with a group, everyone my age, and we decided to walk through the East Village because it was just such an amazing November night. Golden leaves, purple sky, our electric city .. it was magic. I was determined to make it to our destination on foot. I had to stop twice (Every 6 blocks or so) because I was out of breath, weak, and shaking from fatigue. I looked up at my group and not one of them was so much as breathing heavy. Both times I would say “guys, I gotta stop” and they did, and they all get it, and they never make me feel bad for it. But I couldn’t help it… I felt so weak … so “sick”. Ugh.

I tried to stay up but the rest of the night I wasn’t myself. That simple 11 block walk was too much for me! I was so sad not to mention worn out. When I got home I lie in bed awake for hours. I was mourning the days when I didn’t have to think about these things. When I didn’t even have to THINK about walking. What do I do now, I thought? I am 27 what happens in 10 years?

I know I have to slow down and “take it one day at a time” as every single healing book advises, but right now I’m just sad and really angry that this is happening again. I want to walk walk walk, and soak in life, soak in delicious autumn nights like the photo I took below.

I will do anything so that can happen for a very long time to come.

A big reason which keeps me coming back to write and share my...

Mon, 16 Nov 2009 12:32:16 -0500

A big reason which keeps me coming back to write and share my experiences here is to promote self advocacy when it comes to your health or the health of those you love.

When things got bad with my heart I learned quickly that if I didn’t take control of my health I would be in a seriously terrible position.

Videos like the 3 below inspire me because it’s all about knowledge. We have to be curious, ask questions, and do what YOU intuitively feel is the right choice for YOU. Doctors’ diagnoses will scare you, you will innately want to take whatever will fix it fastest, but that may not be good for you long term.

I have used the last year to take myself off medications that I feel were doing me more harm than helping. Many of my doctors disagree with me. I also made a decision that I will not get a flu shot. All this time I’ve been working hard to get the toxins OUT why would I inject poison back in?

The below may not be for everyone, but I give homeboy big respect for his passion and calling out the monster industry that is pharmaceuticals. Courageous.

my deepest wish, my ultimate goal, the dream i dare to dream

Sat, 14 Nov 2009 13:49:38 -0500

A Healthy Ticker

I got this image from the amazing bunnynico . thank you.

SaveLaurensHeart.com

Thu, 12 Nov 2009 18:46:00 -0500

The new Save Laurens Heart site is up and running! It is a major work in progress, with a lot of design work yet to be done. Can’t wait to add some love to it.

I will still update my Tumblr on the regs.

With this journal reaching 2 years, I wanted my own space, something fresh where I can continue to document this ride.

Will you Tumblrs come check it out?

http://savelaurensheart.com

Lots of love

Fluffy blueberry pancakes with warm maple butter… Yea,...

Thu, 12 Nov 2009 14:37:56 -0500

Fluffy blueberry pancakes with warm maple butter…

Yea, maybe it was worth it

My own worst enemy sometimes

Thu, 12 Nov 2009 14:32:54 -0500

I haven’t been feeling well. There is definitely a flare up going on. Unspecific Inflammation as the docs call it. It means I have inflammation in my body, they aren’t sure why or where, and it makes everything painful. The rain exacerbates it to boot.

When it’s really bad I consider going back on the ROIDS but then I remember how off-the-rails-insane I was on those meds and I reel it back in. I just have to deal.

All I want is comfort, relaxation. I found it in blueberry pancakes today. I do not eat much sugar anymore but I just wanted something familiar and warm. Something that reminded me of being a kid, feeling great with lots of energy.

Now I sit here blaming myself for my pain and feeling incredibly guilty for eating sugar. Sugar directly causes inflammation. I know this. So why do I still go for it?

My head is so messed up from everything. I enjoyed them going down but the guilt is too much to sit with. This is crazy right? Doesn’t make sense. But it’s my life right now.

Overload

Wed, 11 Nov 2009 20:33:03 -0500

Cardiologist yesterday. This Doc is old school. He’s at the top of my list when it comes to doctors I trust. We looked at my heart over the echo cardiogram machine. We checked out that leaky creaky valve. It is, in fact leaking much more than it did at the beginning of the summer (this Doc had noticed it then, but it was so insignificant he didn’t mention it or worry about it). He said it was moderate, giving it a 2+ to 3 (4 or 4+ is severe).

He did mention that the leak will, over time, put extra stress on my left ventricle (bad) causing it to dilate and become stretched out and damaged (very bad). At that point there is nothing that can be done to preserve the heart. Then we’re talking transplant.

So, the idea is to fix the valve (first they have to determine if they will be able to even do so), and keep the heart intact and pumping efficiently. The only way to fix it according to the docs I trust? Open heart surgery.

I am still wishing it all away. Wishing that my valve magically goes back to closing up tight when it contracts. Wishing I didn’t have to say or type the words “open heart surgery.”

I have a couple of plans up my sleeve and there are a few more tests to be done before any decisions are made. My doc said yesterday this isn’t an easy decision. Huge understatement there.

I can’t help but to be upset over the news. Upset that my Ticker is going through such a tough time in there. Upset that my life has been doctors doctors tests doctors for the past 5 weeks. I need OUT for awhile. It’s messing with my head.

Tonight I convince myself, mind and body, that I am perfectly healthy and my heart is whole, strong and untouched. If I truly believe it my body has to as well. Right?