Moving Forward

For the first time in the past nine months I can finally say with honesty that I am at peace.  I am at peace with myself, as I am.  At my core I know that everything is going to work out.  My perspective has shifted and I am able to frame my situation in a more hopeful way.  Like, for example, having to take medical leave from school for a year.  At first, making that decision felt like a huge, defining event that would somehow alter the course of my life.  I would be distanced from my friends both physically and emotionally while they complete their schooling and I feared that I would somehow get left behind.  Now, I realize that in the scheme of things, one year out of an entire lifetime isn’t such a big deal.  And the fact that I’m not in school right now does not mean that I am not moving forward with my life and learning new things everyday.  Actually, I think that this year has taught me more about life and myself than a year of school ever could. Having experienced total loss of control and becoming completely dependent on the help of others, I know that no matter what happens I have the supports that I need to survive. The fear that used to weigh me down everyday is gone.  I’m finally living in the present, taking each day as it comes, and accepting my illness for what it is.  I have a strong sense of my limits and when to say no, but I can also begin to start expanding those boundaries a bit.

I guess you could say that I have come to terms with my illness.  It’s a part of me, but it doesn’t define me.  And I’m no longer at war with it.  I’ve accepted that it is here to stay and I am designing my life in a way that accommodates my needs.  I don’t feel such an intense frustration when I flare up and have to cancel plans or I am stuck in bed for periods of time, I just kind of go with it knowing that it won’t always be this bad.  For months people would ask me “when are you coming back to school?” or “how are you doing?” and I would always reassure them, I’ll come through this and I’ll come back to school.  While I made this claim to the world, I didn’t totally believe it.  I needed to say it for myself in part because I was probably a bit in denial, partly because I didn’t want people to give up on me and lose hope, and partly because there was a small sliver of a piece of me that did believe I would improve.  My mantra was “it won’t always be like this” and after saying and thinking it enough times, I have actually come to believe it. 

And I have improved!  I started this blog last October but before that I was too sick to do it.  I was either sleeping or too dizzy to see straight, and I was fainting several times a day.  Now, I am able to write, read, walk, and sometimes even drive.  The fainting has been replaced by manageable light-headedness and my focus has returned.  I have a blog with readers who give me a voice and validate my feelings (please leave me a comment and let me know who you are!  I would love to get to know more of you!).  I manage to get out of the house at least once a week and I can handle being in crowds and doing some gentle activities.  I even recently joined an online dating site (long story)!  I am filled with hope for the future and am motivated to continue improving.  This is only the beginning. 

Ch-Ch-Ch-Changes

Hi everyone, it’s been awhile!  Within the past few weeks life has taken another turn and left me scrambling to pick up the pieces yet again.  Right now, most colleges are on winter break.  For most people that means a lot of relaxation and seeing friends from back home.  For me, it means that it’s time to make a decision about next semester and whether or not I am ready to go back to school.  About three weeks ago, tuition was due so I told my father to pay it in the hopes that I would be ready to return to Clark.  I wasn’t feeling great at the time but I figured I still had a month left for recovery.  That was my plan and I didn’t even want to think about other options.  To me, there were no other options.  I’d had enough of living at home and I would be better in time for school. End of story.  

Time went by and I had some good days where I managed to see friends and even spent a whole afternoon shopping, an activity I never would have dreamed of months earlier.  Granted I slept for about 24 hours afterwards, but it was progress.  Then one morning I got up and took a shower.  As I stood under the water, pain in every limb, I tried to talk myself into having a semi-productive day.  This is how a lot of my mornings start.  Sometimes the pep talk works but more often, its just a small whisper in the face of loud screaming from the fatigue, pain, and dizziness.  On this particular morning, I just wasn’t having it.  I had to sit down to finish the shower on the floor because I was too weak to stand.  And that’s when it dawned on me: I’m not ready.  I can’t even get through a 20-minute shower without feeling like I’m about to pass out.  If I can’t handle such a basic activity, there’s no way in the world I’m ready to live on my own.

Still in a towel and dripping wet I called my parents downstairs and told them my decision.  I think that secretly they were a bit relieved.  We had been planning for me to attend class 4 days a week and then have my parents come up and get me for 3 days a week so that they could take care of me, do my laundry, and make sure I had groceries for the week.  While it was a good idea in theory I think it would have been way too much to deal with in practice.  I cried a little and then we went into action crafting Plan B.  I met with my doctor and we agreed that the next phase of my recovery is physical therapy to recondition my body.  I feel like an obese person, easily out of breath with slight activity and exhausted by simple tasks.  My doctor is very well versed in the needs of chronic fatigue syndrome patients and is going to instruct my physical therapist to be extra gentle and work very slowly to build my strength.  I will meet with the physical therapist 3 times a week for an hour each time.  In addition, Clark is letting me do an independent study from home for course credit so I will have that to keep me busy.  If I am well enough to go back to school over the summer and next fall I will be a college graduate by this time next year.  

While I know that I made the right decision to stay home, I am not at all happy about it.  I haven’t started the physical therapy yet but I’m already resentful that I have to do it in the first place.  It just feels so undeserving.  And I know it’s going to kick my ass.  And more than that, it’s going to force me to confront my limitations.  Every time I get out of breath or dizzy I feel like this disease is bullying me.  I know I need to take control over my situation, and I am, but I can’t help but feel like a victim.  And to top it off I’ve been flaring up really badly this week.  I just want a break from all of this.  I want for one thing in my life to come easy.  But I should know by now, that’s not how it works.  

My Reunion with Cheese and That Time I Got Scammed

Today I ate cheese.  Gloriously, cheesy, cheese.  It was mozzarella and sat atop a pizza with gluten-free thin crust. It was ever so perfectly browned on top with just the right amount of stringiness and that one of a kind cheese texture that no vegan cheese I have tasted can quite mimic (sorry vegans, its good but just not the same).  Today marked my two-year reunion with cheese, my most beloved of dairy products.  Why have I not eaten cheese in two years you ask?  What has changed?  Well that’s a long story that I’m about to tell you now.

Before it was determined that my true diagnoses are chronic fatigue syndrome and fibromyalgia, the one thing that doctor’s could find wrong with me was a hypothyroid disorder, specifically Hashimoto’s thyroiditis.  I worked with an endocrinologist who put me on Synthroid (a synthetic thyroid hormone) and my levels returned to normal, however, I still didn’t feel better.  When I told this to the endocrinologist he told me that there was nothing else wrong with me that he could see and refused to look any further.  Thus, began a marathon to see just about every relevant specialist in the search for an explanation for my symptoms to no avail. 

That’s when my mother and father started researching thyroid disorders and various approaches to endocrinology.  Disappointed with traditional medicine’s inability to help me, I started seeing Dr. Robban Sica, an endocrinologist who also practices alternative medicine.  Dr. Sica seemed like a breath of fresh air compared to the doctors I had seen before.  She took me seriously, understood my frustration, and assured me I wouldn’t have to struggle any longer.  She claimed I was on far too little thyroid medication and that my past treatment with the use of antibiotics etc. had caused damage to my system.  She also believed that I had several environmental and food related allergies.  For the first time after 5 years I finally felt like I we were onto something.  She was going to be my miracle worker.  She was going to cure me of whatever it was that was making me sick.  She treated me with a higher dose of thyroid medication, supplements, IV vitamin infusions, and electrodermal screening for the allergies.

Lucky for Dr. Sica, I began seeing her over the winter when I experience my symptoms the most intensely.  Therefore, the transition into the next season aligned well with the start of my treatment, making it appear that I was improving.  According to the electrodermal screening I was allergic to onion, garlic, tomatoes, any fruits and vegetables with blue and purple coloring (berries, watermelon etc.), yeast, corn, and cow’s milk.  Also lucky for Dr. Sica, my corn allergy caused me to stop eating all processed food that tends to be loaded with sugar (which I now know I am allergic to), onion and garlic cause stomach irritation (especially in already irritated stomachs), and I am allergic to uncooked tomatoes.  Therefore, my stomach did improve a bit with these eliminations.

At first, the experience of working with Dr. Sica was really positive.  She really gained my trust so I let her continue to try new things even though I wasn’t sure they were making a difference.  However, as time went by I reached a plateau where I wasn’t improving any further.  That’s when her practices become more questionable.  My parents and I could start to see that she was getting desperate and running out of ideas, yet she continued to throw pills at me.  In the end, I was taking 64 pills a day (supplements and prescriptions) and she had claimed to cure my allergies to onion, garlic, tomatoes, any fruits and vegetables with blue and purple coloring with drops that I took 3 times a day under my tongue but the other one continued to fluctuate.  So what was really going on here?

For starters, here’s the truth about “electordermal screening”: It looks quite fancy and medical.  The patient to be evaluated holds a source electrode, or brass bar, covered with wet gauze in one hand and the practitioner holds a second brass electrode, or probe, like a pen and touches a specific conductance point in the other hand or in a foot with the probe while firmly supporting the finger. But here’s the catch: all the device actually measures is how hard the practitioner presses the probe against the patient's skin.  

And the pills, supplements, and IVs? To this day, I’m still not sure if any of them really worked.  What I do know is that some of them could have caused major complications had I been on them much longer.  Dr. Sica had me taking 2.5 times more thyroid hormone than I actually need.  She prescribed me Prednisone for adrenal fatigue that I don’t actually have, which could have caused my adrenal gland to stop producing adrenaline on its own if I had been on it longer.  And she had me taking a drug that interferes with the efficacy of birth control pills, but failed to tell me.  

So now here we are, back to me eating cheese with my loving parents who are now $12,000+ poorer thanks to Dr. Sica.  Don’t worry, she didn’t get off scot-free.  Last I checked she is facing charges that could result in the revocation of her medical license.  And I am not a spiteful person, but if it happens, I will eat cheese and laugh. 

Powerful Video

This video was made by Laurel from the blog http://dreamsatstake.blogspot.com.  Thanks Laurel for making this powerful video with such an important message. 

2010: I Survived!

Happy New Years everybody!  New Years has always been a special time for me.  It symbolizes the chance to wipe the slate clean and start anew.  2010 is a year I have been looking forward to finishing for a while now.  In retrospect, I think it has been one of the worst years of my life as well as my family’s for several reasons that I don’t want to get into.  One big reason that you all know about is my illness and the turn it took for the worst this past year.  I can honestly say I feel like I’ve been to hell and am just now starting to find my way back.  However, through it all I have come to realize the great strength present in myself, and my family and friends.  In the coming year I hope for better health and more good days than bad.  

In the spirit of New Years I have traditionally made New Year’s resolutions, however, they often get forgotten as time goes by.  This year I decided to do something different in an effort to be more concrete.  After facing a year of so much uncertainty, I want guarantees.  Therefore, I decided that rather than make a list of things I aim to do, I am going to make a list of things I will never do – for reasons like my illness, my personality, and my lifestyle.  In making this list I aim to accept the things that I cannot change and make room for the things that I will do this coming year.  Here it goes…

Marah’s Never List:

-       I will never be a world traveler.

-       I will never like sports.

-       I will never climb a treacherous mountain (Maybe a hill at some point?).

-       I will never eat copious amounts of sugar.

-       I will never ride in a hot air balloon.

-       I will never eat meat.

-       I will never lose myself in a relationship. (Make that never again…)

-       I will never turn my back on my family and friends.

-       I will never stop trying new things (I know that’s a double-negative you English enthusiasts, but this is a “never” list).

-       I will never get shit-faced drunk.

-       I will never like winter (as much as I really wish I did).

-       I will never go fishing (no offense Dad).

-       I will never be good with directions.

-       I will never have an interest in knowing how machines work.  I’m just glad they do.

-       I will never have good hand-eye coordination.

-       I will never take the small things for granted.

-       I will never impose my beliefs on someone else.

-       I will never give up on myself.
 

Looking back at this list, I feel a bit of weight lifted off of my shoulders.  These things that I will never do are now cast out into the universe for someone else to try.  I am who I am and I’ve been dealt the cards I’ve been dealt.  And so be it. 

Some questions to consider:

What would you write on your never list?

Can you think of anything else I should add to my list?

Happy Holidays!

Happy holidays everyone!  This year I decided to send out a holiday card (actually e-mail) to my friends and family with a bit of a chronic fatigue syndrome flare.  Check it out: 

Dear Family and Friends,

Happy Holidays!  This year, I have watched the holiday cards flood into our mailbox with smiling faces and kind greetings.  In the spirit of the season, I wanted to make a holiday card of my own, but with a bit of a twist.  This year has been anything but typical for me and I feel the need to update the people I love about it.  If this were any other year, you might be getting a holiday card from my family (emphasis on might because sometimes they just don’t happen) sharing my accomplishments like making the honor roll or taking a great vacation.  Unfortunately, this year my accomplishments have been of a very different kind.  They have included things like finding a medication to stop me from fainting several times a day and getting strong enough to stop using a wheelchair.  Perhaps I should start from the beginning.

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal.  In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years, which vary from fatigued but functional, to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a major flare up.

While I do plan to return to college this upcoming semester, chronic fatigue syndrome and fibromyalgia are chronic conditions that I will have to contend with for the rest of my life.  While my symptoms can be somewhat managed, there is always a threat that I will have another flare up like I did this year that will leave me unable to function and take care of myself.  However, there is some hope.  On October 8, 2009, a report was printed in the journal Science citing a possibility that chronic fatigue syndrome is caused by a HIV-like retrovirus called XMRV. Motivated by this discovery, scientists are working diligently to devise better treatments for people with my condition.

I have decided that I can no longer sit around and wait for a cure to come along for me.  I want to be part of the solution.  For five months I have been homebound.  I have felt hopeless, helpless, and my faith has been tested.  Knowing that there is a test available that might explain why I have suffered the way I have provides me with a glimmer of hope; but the fact that there is no treatment leaves me in a bad place.

This holiday it is my wish to raise money for the Whittemore Peterson Institute for Neuro Immune Disease, the facility that discovered XMRV and is driving research and treatment efforts.  I know that the economy is horrible and that everyone just had to shop for the holidays, but like many social issues of our day, beyond generating awareness, the only way to fuel action is through donations.  Up to 10 million U.S. citizens could already be infected by XMRV and our blood supply is contaminated. 

Below is a button that you can press to donate through PayPal using your credit card. Thank you so much for all of your support.  Have a wonderful holiday season and a happy new year.

Happy Holidays,

Marah


Like I did with my family and friends, I challenge you to make a donation!  Press the button below...

An Invisible Illness

With the cold weather kicking in, I have been spending a lot of time curled up with good books to keep me company.  This morning, I finished a wonderfully, heart-warming memoir entitled Look Me in the Eye by John Elder Robison.  The book details Robison’s life with Asberger’s and the trials and tribulations he faces as he makes his way through the world.  Towards the end of the book Robison discusses how his disability is received, noting that his condition is often misunderstood due to its invisible nature:

“A person with an obvious disability – for example, someone in a wheelchair – is treated compassionately because his handicapped is obvious.  No one turns to a guy in a wheelchair and says, ‘Quick! Let’s run across the street!’  And when he can’t run across the street, no one says, ‘What’s his problem?’  They offer to help him across the street’ (Elder 2008).

While I do not have Asberger’s, Robison’s comment resonates with me because my illness is not visible to the outside world either.  In some ways, I am grateful for this invisibility as I do not face the judgment and prejudices that many people with physical handicaps are subject too.  I also get to choose who I tell about my disability and don’t have to wear it around. However, the invisibility also presents a lot of room for misunderstanding. I often fear that missing school, having to cancel plans and miss events, and sleeping a lot more that the average might make me appear lazy or unreliable. In addition, many people don’t understand the extent of my illness because it is hard for them to believe that someone could be that sick when they look fine.  Recently, I lost about 15 lbs. due to stomach issues and people often compliment me on how great I look when really it is because I wasn’t digesting my food properly and was in severe pain.  The truth is I’d rather be fatter and feel better!

The other issue with “looking fine” is that it is up to me to ask for help because it is not offered.  I am a proud person and I have a hard time accepting my limitations. I hate feeling dependent on other people and don’t like being taken care of.  While sometimes I’d like to pretend that I am normal and embrace the invisibility, I know that I am better off when I swallow my pride and allow people to help me.  In the past I have ended up making my self sicker by pushing myself too hard when I should have asked for help.

In many of these articles a theme I keep returning to is control. I often feel resentful that I lack control over my symptoms and the limitations they impose on my life.  However, I have to find control in other areas.  When it comes to the invisibility factor of chronic fatigue syndrome and fibromyalgia, I do have control over how I make my invisible illness visible and to what extent.  Writing this blog is a big way that I choose to make my illness visible. In a way this blog is a kind of “coming out” for me that allows me to take ownership of my illness and find the positive in the lessons I have learned from living with my disability.  In the end, it’s all about balance.  I don’t want to hide my illness but I don’t want it to define me either.  By finding outlets like this blog and asking for help once in awhile, I hope to make my illness visible in a way that does not place a burden on others and helps me to be better understood.

Some questions to consider:

How do you tell people about your illness?

How do you cope with your limitations?

How do you ask for help?