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.