Still in the ER. Yup, there’s 2 docs for an entire emergency room overflowing with people. I wish I had a film crew here with me to highlight the sad, scary state of healthcare in the US. People everywhere. Two beds to a small curtain area meant for one, beds lining the halls and around the check-in desk, beds by the bathroom in the hall, sick. Nothing is moving. My tests look fine so far but they want me to stay overnight to monitor me and rule out a heart attack. When I ask “why, wouldn’t have my defibrillator gone off if that happened?” the answer is no, there is always the possibility with scleroderma that it can attack the arteries, and in the case of the coronary arteries, harden them and create an ischemic heart attack which means the defib would not pick that up. Oh ok, now that you brought that up I am a wreck! I forgot for a little while over the summer that there’s this THING over my head where the docs are always like “such and such can happen since you have scleroderma.” the only thing they know how to do with this condition is WAIT rather than PREVENT. Aaaahh!!! It’s nerve racking. I do a good job of blocking it out to live my life but it’s clear and present and in my face here, in a place where its easy to feel like a vulnerable sick person. So needless to say, I am losing it here, full on anxiety, beeping everywhere, bright lights, an iv sticking me in the arm that hurts so damn much. I’ve decided to check myself out I can’t stay here. Let’s see how long it takes to get discharged. I only asked to see the doc 1.5 hours ago and have not seen one since. Awesome. Amazing. Great way to spend a Saturday. Ps the guy next to me got STABBED in the stomach in a fight! Crazy story. He is scary.

So. I did it. I actually went the whole summer without being in the hospital after the heart transplant evaluation in June. But, it’s as if my body knows it is after Labor Day… and here we are, a rainy Saturday in Columbia’s ER. A very busy ER. It started two weeks ago, chest heaviness. But nothing major. Then heaviness every day this week. Then terrible chest pains last night. All night long my chest was just OUCH! Discomfort. These pains are sharp and it’s something new I haven’t felt before. Last night was bad. I’ve been weak. Then I wake up today and it’s worse, can’t stand up for more than 2 minutes without being dizzy and weak. Then those awful chest pains. I also am so weak that I find it hard to talk and project my voice. Something’s not right. So here we are. Waiting waiting waiting. None of my docs are around on the wknd but my ER doc seems good. We are awaiting a cat scan of my chest to ensure that I do not have any blood clots in my arteries. Let’s hope everything comes up fine and I can blog from home later with good news.

so, despite me generally feeling better i have been getting headaches quite frequently over the past few weeks.  i’ve just been chalking it up to the heat/being tired, or the steroids, but i realized tonight that it’s been going on for way too long.  three weeks probably. i am happy that i will be seeing my doctors next week.  headaches scare me, they were one of the first ways in which my body was trying to tell me something was awry last summer. you know , when the docs told me i had ocular migraines and anxiety instead of catching that little problem with my ticker that had it beating at only 15%!  these are a different type of headache, but they are there so all the same concerning.  tonight i have had one since 6 pm, it’s gotten worse and worse, and nothing makes it go away. actually it’s been there all day and worsened with time. i can’t even get comfortable to sleep.  talk about cranky!

since i am awake, i thought i would share with you something that really stuck with me from my reading today.  i guess i can’t stop thinking about it because i identify so much with so many of the stories in the book.  it’s like reading my experience with a couple of details changed.  only with eye opening statistics —even for me, someone affected by this autoimmune epidemic that considers herself educated on the topic. anyway, this is a little excerpt from one woman’s story:

“To look at Kathleen, however, you would never guess what she has been through or what she faces each morning at the start of her day.  Like many people who suffer from autoimmune diseases, Kathleen’s symptoms remain largely invisible.  And as was the case with cancer several decades ago, those who have the disease tend not to talk about it. ‘People don’t see what lies behind the scenes in most autoimmune diseases’, she says ‘Because we go through ups and downs, you might see us on a good day, between several flares, when we seem to be perfectly fine.  You don’t know that we’ve just spent six weeks in hell.’  Few can imagine, she adds that behind her bedroom door even on one of those good days, Kathleen has to take twenty-two medications about an hour before she tries to get up, just so she can handle the pain when her feet hit the floor.  ‘By the time you run into me at the grocery store at two o’clock in the afternoon and say hello to me, I’m ready to nod and say ‘Oh, I’m fine, how are you?’  Kathleen worries, she says, that because autoimmune disease so often remains hidden from public view, she and other women like her will continue to be stigmatized as malingerers.”

I can hardly make it through the book because I keep putting it down and shooting off emails to make my project happen! I was so inspired before I read it, and now my drive is just insane. More about that soon… we just gotta get some details ironed out.  It’s going to be great.

Back to trying to find a position in which to be comfortable in my own body…

Until tomorrow!

L

sweet dreams

For a few weeks now I have been going for Maya Abdominal Massages.  I am currently so happy with my “healers” and this woman in particular has made a huge difference in the way I feel.

Here is a little snippet from the web about this massage technique:

What is a Maya Abdominal Massage?

Maya Abdominal Massage is a non-invasive, external, massage technique. It guides internal abdominal organs into their proper position for optimum health and well being. The technique works by relieving congestion and blockages to improve the flow of chi and fluids of the circulatory, lymphatic and nervous systems to prevent the progression of chronic disease symptomology. Maya massage improves organ function by releasing physical and emotional congestion from the abdomen. This massage is effective for both men and women.

Mayan massage is used for many things including digestion issues, fertility and women’s health issues, general stomach discomfort, etc.. It is super interesting to read about; you can google it and find more!

My massage therapist uses Castor Oil packs and puts a heat pack on my stomach before the massage.  It is so comforting and you feel like you are in the womb!  Then, she does this amazing massage that wakes up my tummy and gets the blood flowing down there again.  She has also taught me how to do it myself, so I have have the tools and I feel armed when I am having one of those nights pacing back and forth not knowing what to do.  So many times I have wound up in the hospital with escalating pain from my stomach and I didn’t know how to help myself.  Now I do, and I have been giving myself the massages regularly.  She says she already sees a difference in the tissues and veins in my stomach and I have actually been getting hungry AND eating!  It’s so amazing how taking some time out to help myself and pay attention to certain areas of the body can make a HUGE difference in quality of life.  As you can see, I am so happy that this woman Nicole is in my life.  Also, castor oil is amazing in itself, it has such healing qualities (including anti-inflammatory) and i often find myself moisturizing my legs and arms with it.

Mayan massage along with the acupuncture and yoga has turned me into a much stronger, much more confident Lauren over the past several weeks.  I have been working so hard on my body.  Everything I do I am so conscious and mindful and I am trying everything I can.  Next week I have a bunch of appointments with the heart docs:  my heart failure doc, my new pacemaker doc (both at Columbia), and my general cardiologist —all to check in with the ticker and see how she’s doing.   I have been talking with her and I am hoping we see a big inprovement.  The best thing to hear would be that we see one of the walls of the heart starting to move again regardless of the scar tissue.  This is a dream of mine.  Hopefully the healing trend will include the ticker and we will have much more good news to celebrate next week!

For now, it’s a day of rest.  I am super tired today and feeling pretty weak.  So  I will just take it easy and lay low and read my book —which I have to put down every now and then because it’s actually making me angry!

xoLauren

the day was beautiful. what an amazing monday. blue sky, sunshine, one of those days where you walk down the street smiling just because. basically, the perfect day to come out of my technological hibernation. i’m back. and my brain, well it’s buzzing.

been thinking thinking thinking. it all started with the fund rager and it’s taken many forms in my head since then so i didn’t want to say anything yet. i mentioned in my speech that night in june that my plan was to act; to do something to help raise awareness for autoimmune disease… and more. i have big ideas and over the past week a lot of things have been clicking —all signs that i have to do this. i cannot say yet what the project is, because i don’t want to disappoint and i want to do it right. what i can say is that my goal is to create something to shed light on this dark area of “medicine”. there are too many stories of misdiagnosed patients, horror tales from doctor offices, the disconnect between western medicine and the acknowledgment that our environment and what we put into our bodies is a huge factor in quality of life for people living with the pain, fatigue, and discomfort that is the gift of a whacked out immune system!

i am most excited because i feel energized to do this. it’s a driving force to my healing process and today i write feeling the best that i have in over a year. sure, there’s the everyday routine of meds and discomfort and weakness, but the key is it’s getting better. every good moment fills me with so much joy that i am on a high. baby steps. but it is a huge difference compared to a snap shot of myself one year ago today.

to get things rolling, let me drop some knowledge (i love that term) on you guys and then maybe you’ll see where my heads at. basically, i want to put some things on your radar:

i just ordered a book that i cannot wait to dive into. it is called The Autoimmune Epidemic. written by a doctor living with an autoimmune disease, it is an awakening to this epidemic that most people have never heard of:

from Barnes and Noble dot com:

From the foreword by Dr. Douglas Kerr, Director, Johns Hopkins Transverse Myelitis Center

“The Autoimmune Epidemic by Donna Jackson Nakazawa is an astounding book….It is the kind of book that will rivet you and scare you. It will make you angry. It will amaze you with the courage of some of the people described in the book…The Autoimmune Epidemic is every bit as compelling as Upton Sinclair’s The Jungle…It is also every bit as necessary as An Inconvenient Truth….

You will leave this book with no reservations about the veracity of the conclusions: put simply, there is no doubt that autoimmune diseases are on the rise and increasing environmental exposures of toxins and chemicals is fueling this rise. The research is sound. The conclusions unassailable….

Reading The Autoimmune Epidemic is a necessary first step. Reading The Autoimmune Epidemic is a life-altering event. It needs to be.”

I will give a full report when I am done. I will also leave you with a couple of facts from Dr. Donna Jackson Nakazawa (the author) that have sparked my neurons into overdrive and made me realize, this is it Lauren, this is what you have to do!

some highlights from an interesting article written by the same author that i came across in Glamour mag called “The Scariest Health Threat You’ve Never Heard Of” (Sept 2008 issue with Penelope Cruz on the cover. worth buying for the article).

Since there is little to no funding for research on autoimmune disease (considering how many people are living with these conditions) there can be no developments in treatment, cause, etc…

94% of people cannot name a single autoimmune disease.

Small changes can make a huge difference. Even if it is starting to take action on a local level : from Dr. Nakazawa “ASK FOR SUFFERERS TO BE COUNTED”. this means for example, if someone is diagnosed with cancer… the doctor typically reports it to the health department… this is not required for autoimmune disease. hence we do not know how many people are suffering from them, there is no data bank we can research possible causes and cures.

basically, it is a disorganized mess! we need to put faces to this problem. i read story after story of women being misdiagnosed —it takes an average of 4 years of suffering, doctors appointments, being made to feel crazy, before many are diagnosed with their actual underlying disease. these are tricky buggers, and often so many symptoms make each case so different from each other that the research is simply not there. no one has bothered. there has to be a united front, a single place where sufferers (i do NOT like that word but i’ll find a new one for it soon) and the common person can visit alike for information and options. in a world that boasts so many technological and medical achievments, it is sickening to see the lack of attention and cursory comments “experts” give to this very major problem. phew. i’m all wired now!

exciting things to come. i saw what magic can be accomplished when people care (the fund rager), and i know that while it may take awhile, we can slowly, one by one help out by educating ourselves and making this the conversation of NOW.

i am off to try and sleep. key word there is try. i am fired up!

sweet dreams

L