Tag Archives: scleroderma

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.

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.

Autoimmune Disease Summit

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Here is the official webcast of the first autoimmune disease summit which was held on March 3, 2010.  It was the kick off to this exciting month of awareness.  The main theme?  “The Global State of Autoimmunity Today”

From the press announcement:

“The summit will bring together researchers, patients, policy makers, and the media to bring a national focus to autoimmune diseases and to the 50 million Americans who currently live with an autoimmune disease. The program will feature a series of panel discussions and updates on public policy, media responsibility and public health issues, rise in autoimmune disease incidence, and future innovations in tracking, diagnosing, treating and curing autoimmune diseases.” (via)

It feels so good to see an effort to shift the focus onto autoimmune diseases.  I cannot tell you how many people I’ve encountered (including nurses) that have looked at me with an expression of utter confustion when I try to explain my chronic illness.  These illnesses are misunderstood and dangerously under the radar.  I make every effort to spread a little more awareness each day.

Must Read

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The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance – and the Cutting Edge Science that Promises Hope by Donna Jackson Nakazawa

I’ve mentioned this book many times before.  It is a well-written, eye-opening look at how our bodies are desperately trying to keep up with our environment and what this has cost us.  It also offers a hopeful message through ways of managing and hopefully ending this epidemic.

We have to be informed.  Information is the best protection from this major health crisis.

If you or anyone you know suffers with autoimmune disease –even if you are a woman in good health,  please consider checking this out.

“It takes the human body thousands of years to adapt to new environmental stresses -yet in a hundred years we’ve dumped so many toxic substances into our environment that our immune system is being asked to differentiate between our own body and unrecognizable invaders nonstop.  Which makes our body much more likely to make a mistake than it was, say, a century ago.  There are just so many more opportunities to make mistakes.”

-Ahmet Hoke, MD, PhD Director, Neuromuscular Division, Johns Hopkins Medical Institutions

List of Autoimmune Diseases

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“…one in twelve Americans -and one in nine women -will develop an autoimmune disorder.”

- from The Autoimmune Epidemic by Donna Jackson Nakazawa

There are over 100 Autoimmune Diseases and counting.  We also consider Autoimmune-related illnesses when we look at a list like this -meaning diseases that usually overlap or occur along with autoimmune disease. In honor of National Autoimmune Disease Awareness Month here is a list of the diseases to give you an idea of the epidemic we face in America right now.  They are often hard to diagnose, there are no cures for them, and many times these diseases go undetected until a major health crisis erupts.  Very often it can take years of connecting the dots (symptoms) to reach a diagnosis.

LIST OF AUTOIMMUNE AND AUTOIMMUNE-RELATED DISEASES

  • Acute Disseminated Encephalomyelitis (ADEM)
  • Acute necrotizing hemorrhagic leukoencephalitis
  • Addison’s disease
  • Agammaglobulinemia
  • Allergic asthma
  • Allergic rhinitis
  • Alopecia areata
  • Amyloidosis
  • Ankylosing spondylitis
  • Anti-GBM/Anti-TBM nephritis
  • Antiphospholipid syndrome (APS)
  • Autoimmune aplastic anemia
  • Autoimmune dysautonomia
  • Autoimmune hepatitis
  • Autoimmune hyperlipidemia
  • Autoimmune immunodeficiency
  • Autoimmune inner ear disease (AIED)
  • Autoimmune myocarditis
  • Autoimmune pancreatitis
  • Autoimmune retinopathy
  • Autoimmune thrombocytopenic purpura (ATP)
  • Autoimmune thyroid disease
  • Axonal & neuronal neuropathies
  • Balo disease
  • Behcet’s disease
  • Bullous pemphigoid
  • Cardiomyopathy
  • Castleman disease
  • Celiac sprue
  • Chagas disease
  • Chronic fatigue syndrome
  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • Chronic recurrent multifocal ostomyelitis (CRMO)
  • Churg-Strauss syndrome
  • Cicatricial pemphigoid/benign mucosal pemphigoid
  • Crohn’s disease
  • Cogans syndrome
  • Cold agglutinin disease
  • Congenital heart block
  • Coxsackie myocarditis
  • CREST disease
  • Essential mixed cryoglobulinemia
  • Demyelinating neuropathies
  • Dermatitis herpetiformis
  • Dermatomyositis
  • Devic’s disease (neuromyelitis optica)
  • Discoid lupus
  • Dressler’s syndrome
  • Endometriosis
  • Eosinophilic fasciitis
  • Erythema nodosum
  • Experimental allergic encephalomyelitis
  • Evans syndrome
  • Fibromyalgia**
  • Fibrosing alveolitis
  • Giant cell arteritis (temporal arteritis)
  • Glomerulonephritis
  • Goodpasture’s syndrome
  • Graves’disease
  • Guillain-Barre syndrome
  • Hashimoto’s encephalitis
  • Hashimoto’s thyroiditis
  • Hemolytic anemia
  • Henoch-Schonlein purpura
  • Herpes gestationis
  • Hypogammaglobulinemia
  • Idiopathic thrombocytopenic purpura (ITP)
  • IgA nephropathy
  • IgG4-related sclerosing disease
  • Immunoregulatory lipoproteins
  • Inclusion body myositis
  • Insulin-dependent diabetes (type1)
  • Interstitial cystitis
  • Juvenile arthritis
  • Juvenile diabetes
  • Kawasaki syndrome
  • Lambert-Eaton syndrome
  • Leukocytoclastic vasculitis
  • Lichen planus
  • Lichen sclerosus
  • Ligneous conjunctivitis
  • Linear IgA disease (LAD)
  • Lupus (SLE)
  • Lyme disease, chronic
  • Meniere’s disease
  • Microscopic polyangiitis
  • Mixed connective tissue disease (MCTD)
  • Mooren’s ulcer
  • Mucha-Habermann disease
  • Multiple sclerosis
  • Myasthenia gravis
  • Myositis
  • Narcolepsy
  • Neuromyelitis optica (Devic’s)
  • Neutropenia
  • Ocular cicatricial pemphigoid
  • Optic neuritis
  • Palindromic rheumatism
  • PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)
  • Paraneoplastic cerebellar degeneration
  • Paroxysmal nocturnal hemoglobinuria (PNH)
  • Parry Romberg syndrome
  • Parsonnage-Turner syndrome
  • Pars planitis (peripheral uveitis)
  • Pemphigus
  • Peripheral neuropathy
  • Perivenous encephalomyelitis
  • Pernicious anemia
  • POEMS syndrome
  • Polyarteritis nodosa
  • Type I, II, & III autoimmune polyglandular syndromes
  • Polymyalgia rheumatica
  • Polymyositis
  • Postmyocardial infarction syndrome
  • Postpericardiotomy syndrome
  • Progesterone dermatitis
  • Primary biliary cirrhosis
  • Primary sclerosing cholangitis
  • Psoriasis
  • Psoriatic arthritis
  • Idiopathic pulmonary fibrosis
  • Pyoderma gangrenosum
  • Pure red cell aplasia
  • Raynauds phenomenon
  • Reflex sympathetic dystrophy
  • Reiter’s syndrome
  • Relapsing polychondritis
  • Restless legs syndrome
  • Retroperitoneal Fibrosis
  • Rheumatic fever
  • Rheumatoid arthritis
  • Sarcoidosis
  • Schmidt syndrome
  • Scleritis
  • Scleroderma
  • Sjogren’s syndrome
  • Sperm & testicular autoimmunity
  • Stiff person syndrome
  • Subacute bacterial endocarditis (SBE)
  • Susac’s syndrome
  • Sympathetic ophthalmia
  • Takayasu’s arteritis
  • Temporal arteritis/Giant cell arteritis
  • Thrombocytopenic purpura (TTP)
  • Tolosa-Hunt syndrome
  • Transverse myelitis
  • Ulcerative colitis
  • Undifferentiated connective tissue disease (UCTD)
  • Uveitis
  • Vasculitis
  • Vesiculobullous dermatosis
  • Vitiligo
  • Wegener’s granulomatosis

(list taken from the AARDA)

I highlighted the ones I am / have been diagnosed with.

AutoImmune Disease Awareness

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March has been named National AutoImmune Disease Awareness Month!

This is so close to my heart since I am passionate about spreading awareness.  It is the reason I started writing here.  We have to raise awareness and educate people.  The more we bring AutoImmune Disease into our national dialogue the more attention it will get –which means funding for research and eventually finding cures and/or prevention for these terrifying diseases.

“Today, fewer than 13% of Americans can name, unaided, an autoimmune diseases.This is staggering when one considers that there are 100+ known autoimmune diseases, all of which are chronic, many life threatening, and that as a category, autoimmune diseases are one of the top 10 killers of women under the age of 65. With the designation of March as ‘National Autoimmune Diseases Awareness Month,’we begin to focus national attention on this issue, and it’s long overdue,” says Ladd.

According to the American Autoimmune Related Diseases Association (AARDA) here are some things we can do to spread awareness:

1. Be aware that autoimmune diseases target women; 75% of patients are women.
2. Know that autoimmune diseases tend to cluster in families. If your mother had rheumatoid arthritis and your sister had Crohn’s disease, you could be at higher risk than usual.
3. Autoimmune diseases are on the rise in the U.S. and around the world, celiac disease has tripled in the past 10 years in Minnesota alone.
4. Because of lack of early diagnosis and onset of treatment, healthcare costs for autoimmune diseases are overwhelming for patients and the healthcare system.
5. Everyone should know the facts about autoimmune disease.

Please spread the love.  It can be so simple… you can feel free to share my story with one or two people that you know this month.  There are so many like me who may not have a voice.  So many (mostly women) who have been treated like hypochondriacs and often don’t find a diagnosis for their symptoms an average of three years after the onset of their health crisis.  It NEEDS to be talked about.  Let’s talk about it all month long.

The Phone Call

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Rheumatologist finally calls.  I am underwhelmed.

After waiting a day and a half to speak with him it is clear that he is rushing on the phone with me.  I don’t blame the doctors themselves anymore, they simply don’t have time, and I don’t really take it personally anymore but it doesn’t mean that it’s not incredibly irritating.  I always feel alone and a bit helpless after one of these phone calls.  The truth is the doctors really don’t “get it”.  They don’t know what it’s like to be in this sort of pain.

I was put on hold two times for four minutes at a time during our short conversation (he had to go because he had patients in the hospital to attend to).  It was a very rushed conversation… I even forgot to ask him a few things.  After discussing quickly what I’ve been doing to maintain my pain he suggested a new type of drug for me to take: a line of drugs that are currently being used to treat chronic pain in Fibromyalgia patients such as Lyrica, Cymbalta, and Savella.  He suggested and has had most improvements with Savella.

Luckily I have been able to avoid these drugs up until now and I don’t like the idea of taking them at all.  They may be good for some people and I know some who have taken them to alleviate pain, but I personally prefer to keep my prescription meds to a minimum considering all that my badass liver has weathered.  That, and I like to be extra careful because of my heart.  You never know how these things may affect your rhythms.

Also, I am not so psyched to take a medicine where the side effects start out with this statement:

You may have thoughts about suicide when you first start taking Savella, especially if you are younger than 24 years old. Your doctor will need to check you at regular visits for at least the first 12 weeks of treatment.  Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself. Avoid drinking alcohol while taking Savella. Alcohol may increase the risk of damage to your liver.

Um, no thank you.  I think I’ll pass on the hostile, aggressive mood swings and panic attacks.  Been there done that with the ROIDS (Prednisone) and it wasn’t pretty.

And here is my favorite part:  “Be careful if you drive or do anything that requires you to be awake and alert.”

Wtf?  That’s hilarious.

Guess I have to keep up my pain management, and when it’s bad take the painkillers and stay home on the couch.  These other medications are not an option for me.  Not cool.


Icy – Scleroderma and the Cold

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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.

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.