Tag Archives: meds

Discarding my Obsessions with Understanding Death and Illness

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Today, another step in a positive direction;  I’ve officially turned off my Google Alerts for the following keywords:

  • Scleroderma
  • Mixed Connective Tissue Disease
  • Pacemaker Defibrillator
  • Heart Failure
  • Autoimmune Disease and autoimmunity
  • Lupus

Sure, it’s great to know what’s happening and at times I even find articles within these alerts that I write about here, YET they do more harm than help on my mental state most of the time.   Every single Scleroderma alert typically opens up with an announcement of someone’s death that is covered in a small town newspaper.  It talks about their fight with this incurable disease, and how this good person didn’t stand a chance against it… and while I purposely don’t let it affect me, it must do damage and terrify me on some level because I think of them from time to time.  Really though, who needs to read about death every day?

The thing is, I’ve gotta keep my head in the “game”, and my healing and positivity game when it comes to my condition is pretty on point right now.  I’m happy to let these obsessions go.  Once upon a time I felt like if I read every single piece of information regarding my condition(s) available out there on the web I would miraculously cure myself.  Like, if I could just wrap my head around these illnesses, or narrow it down to the very second I got ill, or my heart started failing, and somehow make myself understand, I would make it all disappear…

Happy to be at this point.  Baby steps, but progress nonetheless!  The only Google Alert that I kept?  My fave, Stevie Nicks.

Beginning of the Month = Refills on my Meds

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I am very happy to say that I have cut down my meds to the bare minimums.  No more chemo-like toxic drugs, no more steroids — only the very necessary that I need for my heart.  Having said that, it’s still more than your average twenty something year old.

I stay away from taking anything that I absolutely do not need and I have taken myself off of things the docs insisted I “needed” yet I found to be making me SICKER.   There are days when I need painkillers (unfortunately I still have bad days), and there are other sorts of meds that I take as needed when a crisis arises, but for the most part these medications are not ruining my quality of life.  I’ve gotten used to the heart meds and have figured out a good schedule to take them throughout the day (the intense drowsiness and low blood pressure they cause used to make it impossible to get out of bed sometimes… and forget about standing up too quick)!

Thought I’d share a couple of shots of my medicine and the drawer they live in!  I took this opportunity to clean out that drawer and found a couple of stragglers…

Found !  Leftover steroids a.k.a THE ROIDS a.k.a. crazy pills.  Sure, these little guys got me up and running while I was still very weak and experiencing lots of pain but that came at a cost:  my sanity!  It’s amazing what these tiny pills can do to a person.  They made me a cranky, irritable, sobbing, mess.  I had to taper off them before I completely lost my damn mind.  Straight to the trash can little suckers!

Do not lie down for at least 10 minutes after taking this medication.

Dizziness.

May cause headache.  May cause blurred vision.

Heart protection.

Looking forward to the day I can use this drawer for jewelry and makeup… It will happen.

Found Freedom

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It’s amazing what a few weeks absent of doctors does for me.

It’s obvious from this journal that I have become somewhat obsessed with healing myself which includes attending many standing appointments each week –most of which I have come to convince myself that I now wouldn’t be able to live without.

It takes a lot for me to leave this “routine”.  I feel like a missed acupuncture session (I go once every two weeks), or osteopathic visit (once every three weeks), or pain management therapy (once a week) could be the difference between a happy, able-bodied Lauren and complete illness or disability.  It’s very black and white in my mind, and I am always striving for that illusive balance.

Being away from my every day life for a short time helped of course.  I decidedly push myself into certain circumstances where I may not feel 100 percent safe (within reason of course).  I mean traveling, or being away from my resources: my “team” of healers and doctors and an arsenal of herbal remedies, healing teas, and supplements (I have an entire cupboard dedicated to this).  I feel compelled to force myself outside of my comfort zone often otherwise it’s just too easy to stay confined to a bed, a couch, my apartment, and a small circle of life which makes my world smaller and smaller by the day. You start to believe you cannot do things. In my opinion, that is not living.

So the past three weeks has been about pushing.  Again, within reason (I’ve learned that pushing too far in either direction is no good).  But, I write today very happy and feeling healthy.  I am always a little bit closer to accepting that my health condition will never be perfect, and I must do things that many people my age won’t have to worry about for another fifty years.  But, I’ve come to enjoy being conscious of my heart, listening to my body, respecting when it shows me signs of distress, which in turn keeps me incredibly grateful for every new day. I’ve never felt so proud walking up subway stairs (with mini breaks of course)!

Now the test will be to keep in this head space.  I have an illness within an illness to control here: it’s the phone calls, insurance companies, doctors offices, and general healthcare insanity that I find infects me.  Trying to keep up is ultimately oppressive and heavy –and often times even on a good day a bad phone call could crumble it all.

It takes a lot of strength not to feed into the cycle.  I’m ready for the challenge.  All I keep repeating to myself is:  I am healthy, my heart is healthy in its own way, and everything is gonna be alright.

Misconceptions of Autoimmune Disease – A Story About Heartbreak

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I started writing here with one goal on my mind: raise awareness for autoimmune disease.  This is a story I’ve never shared before except with those very close to me but I feel compelled to write about it now in the spirit of spreading awareness during this month that has been dedicated to doing so.

I was diagnosed with Scleroderma / Mixed Connective Tissue Disease in Spring 2001 at 19 years old after many years of doctors visits with different symptoms.  I was very confused and scared and I knew by the look on my mom’s face this wasn’t good.  What she had learned was heartbreaking enough for a mother.  The two words I noticed to be associated with Scleroderma in whatever I read about it at that point were “incurable” and “fatal“.

I shared the news with my family and close friends who shared my confusion and we did our best to make sense of it with the little knowledge we had and the little information available at the time .  I turned to my then boyfriend and, looking for comfort, I told him what I had just learned.  The very first thing he said to me was “What? I can’t catch this, can I?”  My heart sunk down to my toes and broke to pieces. Needless to say, he wasn’t my boyfriend for much longer after that.  But that one sentence changed me forever in an instant.

From that point on I kept it to myself.  Anyone I would meet in college, all the boys I liked and went out with or wanted to get to know… I wouldn’t ever DREAM of trying to explain something like this to them.  It felt like a secret I had to keep.  How do you begin to explain something so complex to someone?  I even had to explain it to nurses at the time because that’s how rare it was nine years ago.  It would have been easier to just say “I have cancer” because then people just get it, nod their heads, and understand they cannot “catch it”.  I put up a wall and promised I wouldn’t ever put myself in a position to feel that awful ever again so I rarely told anyone about my condition.

I lived my life and it was easy to pretend I was fine with limited bad days, a busy schedule, and I was on meds (methotrexate –which, in large doses is chemotherapy) that supposedly had me in remission.  Little did I know that one day it would ravage my body and set sights on my heart, changing my life forever once again.

During that period and in the years since I have even gotten a handful of people that hear “autoimmune disease” and immediately stop listening –and I guess upon hearing the word “immune” they go “Oh, like AIDS?!”  Well, NO it is nothing like HIV or AIDS. You cannot acquire an autoimmune disease through contact, or “catch it” that way either. You are born with a predisposition to it.  It is in your DNA.  It is your body’s failure to regulate one or many of it’s systems.  In my case, it is overproduction of collagen (scar tissue) and a disease of the small blood vessels.  My body cannot regulate it’s healing reactions and it goes into overdrive and attacks not only the germs but its own organs (i.e: the case with my heart).

I got many surprise reactions from many people when I was told my heart was failing in 2007.  They had no idea where it came from.  I always seemed fine, like nothing was wrong, and it even caught me by surprise.  But I had kept my autoimmune disease a secret for so long that it was time to share my story and spread the word.  If I can help even one woman or teenage girl avoid the confusion and unreasonable shame I felt then I feel I have done something good. No boyfriend should ever ask this question of their girl ever again.

In a world where autoimmune disease affects 1 in every 13 women it’s quite impossible to believe that 90% of people cannot name a single autoimmune disease.

Let’s please change this.   The more we know, the more research gets done, the more of a chance we find cures and ways to manage this terrible diseases.  Or even better, prevent them.

These days I have a man who loves me and my scarred heart to the end of time.  He’s got my back in this quest to heal myself and change the game in autoimmune diseases awareness.

I would love your help in doing so as well.