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.