Vote for WPI!

The Vivint Givesback Project needs your help in honoring local charities that are doing heroic work in communitites across the United States.  You can vote for one charity per day.  The charity that has earned the most overall votes will then be awarded $250,000.  The remaining charities that earn the most from each of the regions will each receive a $100,000 donation. 

Rather than sitting around waiting for a new pill or cure to come along, show support for the doctors in our corner!  Our illness robs of of our power to do much of what we want to do in life but it can never take away our power of speech.  The WPI is dedicated to researching neuro-immune disease with a big goal of developing new treatments for those suffering from CFS.  Right now WPI is in 6th place overall and 1st pace in the region.  If we all vote we can push it up to number 1! 

Chase Community Giving: Vote for WPI!

Chase Community Giving is holding a charity contest offering a share in $2,500,000 to the 100 charities that receive the most votes from Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities vying for votes and they need our support! 

WPI is a vital organization to the CFS and fibromyalgia community that drives significant research, awareness, and advances in patient care.  With enough funds, the institute provides hope for the discovery of definitive diagnostics, treatments, and even a cure for these life-altering diseases.  WPI’s work also contributes to advances in the understanding of other neuro-immune diseases, including autism and Lyme’s disease.

Voting is easy and only takes a few minutes!

If you have a facebook account:
1. Go to http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" at the top of the page
3. Go to http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and select vote!

Remember, every vote counts!  Take a minute of your day to make a difference. 

Event for Fellow Bloggers

If you are interested in learning about blogging and creating communities around chronic illness, join Lisa Emrich of Brass & Ivory, a prominent MS blogger, Amanda Dolan of WEGO Health, and Jenni Prokopy, editor of Chronic Babe, tonight at 8pm EST for a live Webinar entitles "Navigating Your Health Narrative".  

For more information, check out: http://blog.wegohealth.com/2011/04/04/upcoming-webinar-navigating-your-health-narrative

And to register to attend or receive the audio afterwards, go to: http://info.wegohealth.com/navigating_your_health_narrative

Relationships: Love Under Conditions

In life, relationships are tested by a number of factors and circumstances.  Time and time again, life throws us a curveball and how we handle it and the way our friends, family, or significant other respond determines the course of the relationship.  For those living with chronic illness, our medical condition forces an ongoing evaluation of our coping skills and the support skills of our peers.  Whether we like it or not, hard times give insight into who our true friends are.  Sometimes the person you thought loved you can’t handle the situation at hand and backs out.  And sometimes, the most unlikely person steps up to the plate when we least expect it.  

The best way I can distinguish between both experiences is recognizing that there are fundamentally two different types of relationships: unconditional and conditional.  Unconditional relationships are what we strive for.  They are enduring, life-long, and can outlast the most seemingly impossible challenges.  These are the relationships that possess a unique bond that allows love to exist unconditionally. It should be noted that unconditional love doesn’t mean that concessions and sacrifices aren’t made; we can’t get everything we need from just one person.  However, we always love the other person even though we might not always like them.  In contrast, conditional relationships are those that only exist under certain circumstances.  While these relationships may end up in disappointment or fail to stand the test of time, they hold great value.  Examples of conditional relationships include exes, friendships that ended in fights, or people who just grew apart with time.  

Relationships for people with chronic illness pose unique challenges.  A flare up, a new symptom/diagnosis, or a particularly scary event can be the condition that determines whether the love between two people is conditional or unconditional.  This realization is hard to accept because it feels so damn unfair.  We don’t decide to be sick, yet we are at risk of getting rejected for it.  It’s a vulnerable place to be.  We want to present our best self to the world but that isn’t always an option.  Sometimes being in pain can’t be disguised as easily as we would like, or we can’t be as available or giving as we were when were feeling better.  Some people view our inconsistencies as weaknesses that they can’t accept and the relationship can’t endure the hardship.  

How do we confront the variety of possible “deal breakers” without being consumed by fear of having relationships?  Well, at the heart of all successful partnerships is mutual understanding.  Both parties need to have a strong sense of what the other person is willing to accept and live with.  My best friends are the ones who take the time to understand my condition.  When they look at me they see my strengths, not my weaknesses.  They love me because of what I can offer, not what I lack.  They see me as Marah, a girl with many qualities, not Marah the “sick girl”.  In turn, I accept them for who they are and try to offer my support to the best of my abilities.  When you are in a relationship with me (romantic or not), you get the whole package – the good and the bad. 

I think the poem “Reason, Season, Lifetime” best sums it up:

People come into your life for a reason, a season or a lifetime.
When you figure out which one it is,
you will know what to do for each person.

When someone is in your life for a REASON,

it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.

Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.

LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.

It is said that love is blind but friendship is clairvoyant.

Questions to Consider:

What are your “deal breakers”?

How do you confront the fear or rejection?

How does chronic illness present challenges to relationships?  What can we do to overcome them?

Waiting

Over the years, I have spent countless hours, in countless waiting rooms, in countless doctor’s offices.  As such, I have had ample time to observe about their layout, décor, entertainment options, and the people they hold.  During this time, I have noticed several similarities among the rooms.  For starters, it seems as though the majority of waiting rooms were designed in the 1980’s and have remained frozen in time.  They tend to feature either a green and pink motif (especially OBGYNs and the more girly offices) or an industrial red and blue theme.  Fake plants and seasonal decorations are carefully placed to provide some sort of low maintenance decoration.  Irreverent scenic photography and rejected framed prints from someone’s house (or grandma’s house) adorn the walls.  Typically, there are offerings of pamphlets and there are always magazines to read (I personally don’t touch them in fear of germs).  You know that your wait time is going to be long if there is a TV.  

In my experience, the best way to spend time in a waiting room is to fulfill their designated purpose, just wait.  I’ve brought books before but I can never seem to concentrate due to the nerves of the upcoming appointment, the feeling of being sick and in a daze that has warranted the appointment, or the chatter of my fellow waiters.  The other day I was in a particularly foul mood when I found myself sitting in my general practitioner’s waiting room with a red, swollen, possibly infected knee (that still remains unexplained).  The week had been a bad one as I was in the midst of a flare up within my now 6 month long total life flare up.

At the other end of the row of chairs I was joined by a mother and daughter pair who were coming in for a regular check up.  The mother was older, probably in her 70’s-80’s and the daughter was accordingly younger, somewhere among the baby boomers.  I am slightly ashamed to admit that during this wait I found myself eavesdropping (they were talking pretty loud and c’mon, we all do it, right?).  To say that the mother was a whiner would be an understatement. I understand that most people aren’t their “best selves” when they have to go to the doctor, but on that particular day I didn’t care to take that into consideration.  Essentially, the gist of the woman’s complaints were that getting old is miserable and that no one can possibly understand what its like until they get old too.  She had a cane and was saying how troubling it is to move at a slower pace and require so much rest.  She didn’t want to be at the appointment.  She probably wouldn’t be able to remember what the doctor was going to say anyways, and all she wanted at the time was to put her feet up and take a nap.  

On a good day I would like to think I would have been compassionate and even empathetic in this situation because I totally understand the woman’s feelings.  However, on this day, I just wanted to smack her.  There I was, also with a cane (for my knee), also wanting to be home and in bed (anywhere but that goddamn waiting room), and also anticipating an appointment where I would be in a fog.  The difference between that woman and myself?  I’m 21!  I don’t know what her life has been like up until this point, but the simple fact that she was at an age where it is expected and acceptable to slow down, while I am in my youth and facing the same challenges felt like a major slap in the face.  

While chronic illness is universally challenging and life-altering, it holds a different significance for young people.  I have been sick since the age of 14.  Because my illness emerged during my teen years, my symptoms were often associated with normal changes of puberty and “teen angst”.  It was easy for me to be labeled as depressed and sent to the psychiatrist when tests came back negative.  In addition, I was vulnerable to deferring to authority.  I came to believe that I really was just depressed and that my symptoms didn’t go any further, even when I did not improve with antidepressants and therapy.  As is the case with CFS patients, especially children, it took me 5 years to get a medical diagnosis and 7 more years to find appropriate treatment.   

 At 21 years old now, chronic illness plays a large role in my development and the choices I make regarding my future.  Getting an education has been an ongoing struggle that I continue to face.  Sadly, my class will be graduating this year without me.  After graduation, many of my friends will be trying to get 9-5 jobs, traveling, joining the Peace Corps, who knows?  In my eyes their possibilities seem endless, whereas, I cannot plan past this week.  I also feel like having been diagnosed earlier in life, my entire life path is more affected by illness.  Will I get married and have children or will my illness get in the way?  Will I be able to live where I want or will I have to stay close to my parents and doctor?  There are a lot of questions that remain unanswered.  The other day my dad told me a quote he had heard that pretty much encapsulates the way chronic illness has forced me to live in the present.  He said, “G-d only shines the light at your feet because if he shined it on the path in front of you it would be too much information.”  In a way I think that is my motto.  I keep putting one foot in front of the other and living one day at a time in the hopes that I am following a path that will make sense for me in the long run.  And in the end, I think that’s the best we can all do.  Nothing is ever for certain. 

Low Blood Volume, POTS, and NMH

 

Hi everyone!  It’s been a while since I’ve done a more informational post and I think it’s about time.  Given the progress I have made, I am always looking to share my discoveries with all of you in the hope that you might have a similar symptom and could benefit from my experience.  As the title suggests, the topics I want to discuss today are low blood volume, POTS (Postural Orthostatic Tachycardia Syndrome), and NMH (neurally Mediated Hypotension).

Orthostatic intolerance is the presence of symptoms such as lightheadedness or dizziness while standing or sitting upright and has been associated with CFS in both adults and children.  There are many type of orthostatic intolerance but the primary types associated with CFS patients are POTS and NMH.  POTS is classified as a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) above normal, or to more than 120 bpm total, during the first 10 minutes of standing. Sometimes POTS can have a delayed form meaning that heart rate and blood pressure changes don’t develop for many minutes after standing. NMH is an abrupt drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.  POTS and NMH can be experienced alone or together.  Overall, individuals with orthostatic intolerance experience dizziness, lightheadedness, momentary loss of vision, and sometimes loss of balance and fainting upon changing positions.  

I suffer from both NMH and POTS but physicians tend to classify my condition under the label POTS as I will from now on.  For about 3 months, my dizziness would strike with such intensity that I had to rent a wheelchair so that no matter where I was I would have a place to sit down and pass out. POTS made it hard for me to leave the house and significantly increased my brain fog, fatigue, and pain level.  It also landed me in the hospital twice where I was tested from head to toe with no results.  Without treatment for my POTS I have no doubt that I would be fully bedridden. 

So what causes POTS to occur?  Most physicians agree that POTS stems from inadequate blood circulation that reduces the amount of blood getting back to the heart and brain.  Patients may have low blood volume throughout the body or their blood may pool excessively in the extremities.  As a result, patients with POTS experience more pooling and reduced brain blood flow than normal while standing.  When blood volume is low in the heart as during pooling, the brain releases chemicals that alter the pulse and blood pressure in an effort to get the blood flowing upwards again. When this chemical response occurs, patients can develop low blood pressure (hypotension), a rapid heart rate (tachycardia), and orthostatic symptoms like dizziness and sweating.

What can you do to test for POTS? (Yes there is an actual test that provides evidence for POTS!)  Many patients are given a tilt table test to evaluate for POTS.  However, due to the possibility of a delayed response, this test is not always accurate.  In this case, a second lesser-known test called a blood volume test can be used.  The blood volume test calculates the total amount of blood in the body, which is often low for CFS patients with POTS.  Both tests are non-invasive and very worthwhile if you are struggling with any of the symptoms I have described.  

Why was it so hard for me to get a diagnosis of POTS?  As it turns out, I was diagnosed with POTS when I was first diagnosed with CFS and fibromyalgia back in 2003 but the only treatment offered to me was increased hydration and salt intake.  In addition, I was very out of shape due to being bedridden; therefore, the POTS reversed itself as I resumed my normal activities.  The first symptom to return with my most recent major flare up was the POTS and this time it was much more severe and could not be cured with simple measures.  Also, my POTS took on the appearance of a neurological condition because it caused me to faint and tremble in a seizure-like manner.  Therefore, my hospital trips were evaluated from a neurological perspective with a spinal tap and MRI that both came back negative and failed to explain what was really wrong.

 

What’s the treatment?  Like all things chronic, POTS cannot be fully cured, but it can be well managed with medications and therapies.  Personally, I use a combination of beta-blockers and the drug Midodrine.  The beta blockers help regulate my blood pressure while the Midodrine (aka Proamatine) constricts the blood vessels in my arms and legs to keep blood where it is most needed, in the head and abdomen.  In addition, I drink a lot of water, salt my food when possible, and wear support hosiery for hard days.  As I am getting in better shape my POTS is also improving.  My protocol might not be right for everyone and my suggestions are only to be taken as a patient.  As if it isn’t already obvious, I am not a doctor!  

If you have any further questions you know where to find me!  Also feel free to e-mail me at cfsadayinthelife.com if you would like your message to be confidential.

References:

http://www.cfids.org/archives/2000/2000-4-article01.asp “Feeling Faint? What You Need to Know about Orthostatic Intolerance and CFIDS”

http://www.cfids.org/cfidslink/2009/070105.asp “Top 10 Tips to Manage Orthostatic Intolerance On Your Own”

http://www.cfids.org/cfidslink/2009/070104.asp “Medications Used to Treat Orthostatic Intolerance”

http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx “What You Need to Know About the Blood Volume Test”

I am a Product of Modern Medicine

Last night on CBS news with Katie Couric, news of a study on Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue Syndrome was broadcast (to find out more, check out http://www.prohealth.com/library/showarticle.cfm?libid=15959 and the news broadcast at time point 17:14 at http://www.cbs.com/cbs_evening_news).  The study was conduced at the University of Medicine and Dentistry of New Jersey and claims that, unique proteins discovered in spinal fluid can distinguish between CFS and Lyme’s disease as well as from people in normal health.  If chronic fatigue syndrome can be detected through specific biomarkers, it is much harder to deny its existence.  In addition, such a study will give great insight into new treatments as well as allow for differentiation between CFS and Lyme’s disease (which present with very similar symptoms).  Before I go on, let me just say that I am in no way a medical professional and that I can only offer my opinion on the matter.  With that being said, if this study proves to be valid, it is a pretty big deal.

Having lived with chronic fatigue syndrome, I try my best to keep up with current research.  Whenever new information is released, I am reminded of the large role that modern medicine plays in my life.  For as many times as I’ve felt let down by the medical system, I can honestly say I wouldn’t be here without it, or at least I would not be the same person.  My thyroid would not have the capacity to control my body’s metabolism.  My POTS would leave me unable to walk or stand and my irregular blood pressure would take a toll on my heart.  I would be severely anemic.  My stomach would probably be a mess. And if that wouldn’t be enough to kill me, I would probably be depressed enough to commit suicide because my neurotransmitters are so screwy.  I don’t mean to sounds dramatic, but by having tests available to find my deficiencies and taking pills 4 times a day to counteract them, I am making my life livable.  And that’s a hard pill to swallow (pun intended).

I often hear from family and friends, “everyone has something” or “we’re all on pills.”  While these comments sometimes feel like they minimize my struggle, they do hold some truth.  In the past, there was no such thing as high cholesterol, Liptor, and Aspirin regiments; people just dropped dead of heart attacks.  Today, basic needs such as dentistry and orthodontia allow people to eat food with the nutrients necessary for survival.  If I hadn’t worn braces for 4 years and had several teeth removed, I’m not sure where I would be (probably in dentures or with a lot of extra teeth like a whale).  And then of course we can’t take for granted the fact that most of us in America have proper nutrition and hygiene to allow for basic functioning and prevention of disease itself.  We are so lucky that if our sex lives aren’t satisfactory, we can take Viagra to make that connection good again.

I guess what I’m really trying to say here is that modern medicine has pervaded our lives in immeasurable ways.  The bottom line is it makes chronic illness possible and it is the reason I am able to sit here and write to you all.  We are living longer than ever and are increasingly more functional then ever, despite odds that say we shouldn’t be.  And it’s only going further.  So for as much as I harp on doctors who have denied my illness, made me feel like a lab rat, or given me harmful treatments, it seems to be part of the package.  In a way, I feel proud to be chronically ill because I represent the possibility of managing symptoms and living a full life.  At this point in my journey, I don’t expect for a miracle cure to come along and save me; I consider it a miracle to be doing what I am doing right now. 

Normal Sick vs. Chronic Illness

Wow, it’s been a long time since I last wrote a blog entry.  I’ve missed you guys!  The good news is that it’s taken this long because I’ve finally started living my life again and have been more busy! First I’ll start with an update: I’ve been doing physical therapy for over a month now and it is incredible.  I am amazed at how much it is helping me get my strength back.  The progress I’ve made in such a short period of time is really impressive if I do say so myself.  My muscles are waking up and doing their jobs again.  My pain level is going down, slowly but surely, and I am able to walk around more.  

I actually feel like a member of society rather than an observer.  I am working on my independent study for school and love having the ability to focus and think analytically again.  All that being said, I still have a long way to go but it all seems much more doable now.  I think the biggest change in the past month has been in my attitude.  I feel motivated and empowered rather than helpless and scared.  Things feel in my reach and my passion for living has returned.  I guess you could say I’ve gotten my groove back!  

So that’s the general life update…  As for the most recent events, I’m actually not too happy right now because I’ve been sick with a stomach virus for about 3 days now.  Yuck, gross, disgusting.  Apparently, it’s going around and my minimal contact with the world is enough to catch it (not surprising).  Whenever I get sick (as in what’s going around sick, not chronic illness sick), I can’t help but wonder if my experience is different than someone who doesn’t have a chronic illness.  

Viruses seem to affect me more than the average person, both physically and emotionally.  Physically, they seem to knock the stuffing out of me more and they tend to last longer due to my compromised immune system.  I sleep a lot more (ridiculous amounts) and my POTS acts up.  Emotionally, I always fear that I’m going to go into a flare up and it brings back bad memories of being sick so much in the past.  I tend to go into panic mode, thinking here we go again, just as I thought I was getting stronger something else comes along.  I think it’s almost like a post-traumatic stress kind of a reaction.  I wish I could brush it off and relax like most people do when they get sick, but I seem to go into high alert mode and get really negative.  

Given that I am aware or my tendency to freak out in the face of viruses I have been working hard this time to remind myself that this virus is different than being chronically ill.  It really is just a stomach bug and its not going to spiral out of control.  I need to separate the emotional from the physical and try to get sick like a normal person.  Normal people don’t get super anxious and feel like they are falling off the deep end; they call in sick and take the day to chill and recuperate.  Granted it takes me longer to recover but I’m used to that by now.  The important thing is that I know I will get better eventually.  So that’s what I’m trying to be mindful of this time around and so far it’s going pretty well.  I did have one break down but I think that was mostly out of boredom and the frustration of only being able to eat rice for 3 days.  And I think that’s kind of normal, right?

Some questions to consider:

How do you deal with the posttraumatic stress that comes between bouts with chronic illness?

What other fears do you face with your chronic illness?

What to Do?

It’s 11:11 AM and I’m sitting on my bed with a huge mound of clothes in front of me.  I woke up about an hour ago determined to make something of my day so I decided to unpack some of my boxes I brought home from college.  I can’t believe I have so much clothing.  I remember buying it and wearing it but now that I’m unpacking them, they don’t even feel like mine.  Who is this girl who wears sundresses and business pants?  Why do I have these tops for going to parties and out dancing?  This isn’t me anymore; but I so wish it was.  I wish I had a place to wear the dress I wore for my first anniversary with my ex boyfriend or that sundress I wore when it was hot enough to go to the beach.  

Besides the fact that is winter, I can’t picture my self doing those things now.  My laundry is done every week and it consists of sweat pants and pajamas.  I have nowhere to go, no reason to get dressed up.  I haven’t even unpacked my jewelry yet because I don’t bother to spend time adorning myself anymore.  What’s the point?  I’m not trying to impress anyone or even meet anyone new.  I’m just trying to get better and that means I rarely leave the house and when I do it’s mostly for physical therapy.  

So now here I sit, paralyzed, looking at all of these clothes from this past life I once had, wondering what to do.  I don’t want to put them in my closet, a constant reminder of what I can’t do.  But I’m not going to get rid of them either because I hope to wear them again some day.  By then, who knows what will be in style anymore.  How long will this rehab thing take?  And who will I be by then?  Will I still be a person who needs a top to go to the club?  Will I ever even be able to dance again?  I know I’m supposed to live in the present and “take each day as it comes” but I can’t help thinking of a life beyond this because the life I’m living right now is not enough.  I can accept it for right now, and I have, but not forever.  Frankly, it’s testing my patience and changing my identity.  This illness is so isolating and it has taken away my zest for life.  I don’t know how to spend my days anymore.  I’m always looking at the clock amazed at how slowly time passes.  

When I used to sleep the day away it felt like time was escaping me, but now that I’m awake, I spend my hours in pain, trying to pass the time as quickly as possible.   That’s no way to live but I can’t find an alternative right now.  I do my physical therapy exercises, I’ve tried painting, making jewelry, doing puzzles, I’ve read a lot of books, I do a little school work, but it just doesn’t seem to add up to anything meaningful.  Everything seems to pale in comparison to the challenge of getting better.  

And looking back to where I was a while ago, I am improving.  I can see that.  But sometimes is just feels like old problems are getting replaced my new ones.  I used to sleep all the time, now I’m awake and in pain.  I used to get viruses all the time, now I have a consistent stuffy nose and sore throat.  Hopefully I’m at least trading up but I can’t be so sure.  And the options for medication are running out and the pressure is on me to get back in shape.  I want to be good enough to walk up the stairs without feeling winded and ready for a nap.  Hell, I want to walk anywhere without being ready for a nap.  I knew recovery wasn’t going to be easy but I just don’t know how much more I can take.  And of course, I don’t have much of a choice.  This is the last hope.  And I have to rise to the occasion.  Right?

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?

Vote for MCWPA's Ad Campaign for the Washington Post

As a CFS and FM patient who has struggled for years for answers within the medical community, I am always on the lookout for ways to support research and raise awareness of these illnesses.  Recently, the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient group, has been working on an ad campaign to run in the Washington Post.  The goal of the ad campaign is to encourage reporters to do a story the will delve further into the experience of CFS patients and generate awareness within the general population.  For years patients have not received the care they deserve due to lack of funding for research and a lack of public awareness about this problem.  MCWPA is sending the message that addressing the needs of patients is the responsibility of society, not just the patients themselves. 

Get involved!  MCWPA has designed 4 different ads and is allowing the public to decide which one will run in the Washington Post.  Cast your vote at http://mcwpa.org/2010/11/ads-ready-for-final-vote/.  Voting ends on Monday, November 29 at midnight EST.

That's So Cliché...

The other day I was feeling a bit desperate which led me to write a list of motivational words to cheer myself up.  As it turns out, it did the trick so I thought I’d share it with all of you:

Be patient.

Things will get better.

Time heals all wounds.

All is not lost.

Family and friends aren’t going anywhere.

Seek gradual improvements.

Be good to yourself.

Breathe.

Find comfort in small things.

Listen to your body.

Get a second wind (or third or fourth…).

Start small and grow.

You are not your illness.

Strategize, make plans, set goals.

Stay in the present.

Don’t compare yourself to others.

Never give up.

Stop feeling guilty.

Stop judging yourself.

Love yourself.

Give yourself some credit.

Be proud of your accomplishments.

Pamper yourself.

Nurture yourself.

Learn to let go.

Don’t sweat the small stuff.

Be appreciative.

Rise to the occasion.

Conquer your fears.

Relax.

What Goes Down, Must Come Back Up

Lately, I’ve been doing a lot of reflection on my life and its most recent events.  Looking back, this has been a year of great loss.  I have lost many of my abilities due to my health issues, and as a result, I have lost my sense of confidence and direction in life.  At the beginning of this year, I was dealing with chronic fatigue syndrome and fibromyalgia but it was very manageable and did not stop me from being in school, having a boyfriend, and keeping up with my friends.  Now, I am at home where I only have one friend, have been dumped, and have the hobbies and activity level of someone in their 70’s rather than someone in their 20’s.  I sleep the majority of the day, knit, and have even taken up watching Jeopardy and Wheel of Fortune every night with my parents.  In addition, I have had two very traumatic trips to the hospital due to fainting spells.  I’m hoping to go back to school for next semester but nothing with me is ever certain.  So where do I go from here?

Well, what I’ve concluded is that the only direction is up.  I have been thoroughly cast scanned and MRIed (yes, these are verbs in my book) and it has been concluded by several members of the medical community that I am not dying.  This fact alone eliminates any further surprises.  Other than that, I know for certain that my friends (though they may be long distance) and my family aren’t going anywhere.  While I don’t do much every day and I don’t have much of a direction, I’ve learned to believe this is only temporary.  And as far as my health is concerned, I have a new doctor and am going to defer to his suggestions.  All I can do in the meantime is focus on minimizing my anxiety and stress level.  I can’t predict the future and trying to only leads to fear. 

I guess what I’m really trying to say is that I need to live in the present and take each day as it comes.  When I feel sad, I will let myself feel sad.  When I feel tired, I will sleep.  And when I am in pain, well … they actually make pills for that!  And while at times this seems like a pretty pointless existence, it is only a temporary state. Though gradual, I do see improvements in my health and I know from past experience that my illnesses tend to peak and plateau.  If nothing else, I am living to see this thing through and find out what the future holds.  I do believe that there must be some purpose to all this suffering and that whatever/whoever is out there (g-d or whatever you believe in) isn’t just being cruel and making an example out of me for no reason.  I might hold the key to some answers or at least be able to guide someone else through a similar experience someday, who knows?

Questions to Consider:

What keeps you sane?

How do you deal with times when you are homebound?

How do you confront loss?