Saturday, February 11, 2012

too tired to write it myself...

i fell down the rabbit hole today - and i apologize for not knowing how to link this article better, but i didn't want people to have to click over - this is from a woman's blog that i came across and i am embarrassed to say she does a much better job at medically explaining the theory of this illness than i have - and yep i went to medical school, of course the clarifying - naturopathic medical school - make this no reflection on my education, rather my escape from the "doctor" point of view -

before i copy it, the part where she discusses vaccines, that part woke up my brain to a long forgotten memory - when i was about 12 i started getting allergy shots - to help with my seasonal allergies (i didn't have any food allergies back then) i got them for years, even when i went away to college.  and i remembered sitting in the nurses office getting my shot that was sent by my allergist back in milwaukee and i had a really extreme injection site reaction and specifically remember having to wait in the office a call made back to milwaukee and finally being released to go back to my dorm room.  I was out cold the rest of the evening.

i decided at that moment to stop getting the shots.  when i returned home i had a follow up at the allergist and they decided to re-test me - an awful experience of about forty scratches on your back - and the results were peculiar - my skin tests showed ALL of my allergies were worse than when i started getting the shots that were suppose to help - and so they decided to "re-mix" the formula - and i politely declined.

that was the first time i saw an "alternative" practitioner - our family friend connected us with Jim Ehmke, and slowly after about a year's time of supportive rather than suppressive measures, my seasonal allergies had almost completely vanished - and my overall health improved greatly.  That was the beginning of my twenties, and i can't remember if it was prior to or after my tonsils were removed.  but this light bulb went off - i had the constitution for this illness long before its current manifestation - i was just younger, stronger and didn't have as many tipping point infections - but the dysfunction showed in the reverse effects of the allergy treatment........

that was my "prologue" here is that very informative article -
one more thing before i take my body that currently feels physically, mentally, and emotionally broken into a million little pieces (shout out james frey - but i'm not making this stuff up)  a cryptic dedication - thank you sp i will always have a reason to be grateful that dixon closed - and a bunch other sappy stuff that would make your eyes roll.


Immune System Abnormalities in ME/CFS

(NOTE: Many of you expressed interest in hearing more about how Immunovir has helped me this past year, so I started to write a blog post about that, but I quickly discovered that I needed to explain how ME/CFS affects the immune system before I could explain how Immunovir treats it.  It's just too much for a single post.  So, consider this Part 1, and I will write the second part later this week.)

Within the first year of getting sick, before I even had a diagnosis, I knew that some sort of immune system problem was at the heart of whatever this mystery illness was.  I saw the same pattern, over and over again, with recurring symptoms like sore throat, flu-like aches, and congestion, but it was obvious these weren't colds - the symptom pattern was exactly the same every time, signaling the start of another relapse (you learn to instinctively call them crashes pretty early - it's the perfect description).  One Infectious Disease doctor told me I was just catching a lot of viruses, but I had never in my life had two viruses that were exactly the same, and now I'd had a half dozen in a year.  The only thing that made sense was that my immune system wasn't working correctly.

When I finally got my diagnosis of ME/CFS, a full year after getting sick, I was hungry for information and devoured everything I could find about CFS - in books, on websites, and through the other people I was gradually finding online.  I discovered that my instincts had been correct and that a dysfunctional immune system is at the root of CFS.  Although the exact cause of ME/CFS is still not known, its immune system abnormalities have been documented in dozens of research studies.  Most experts agree that there is some sort of infectious agent that triggers immune system dysfunction and that the dysfunctional immune system is the engine that sustains the illness and causes a cascade of domino effects in the endocrine and nervous systems that lead to our substantial and disabling symptoms.

Most illnesses of the immune system fall into one of two categories.  There are immune system deficiencies, like AIDS, where the immune system is suppressed and doesn't respond properly to infectious agents.  On the other side, there are auto-immune diseases, like MS, lupus, rheumatoid arthritis, and others, where the immune system is over-active and not only over-reacts to infections but also attacks the body itself.  Unfortunately, ME/CFS does not fit neatly into either of these categories.  This means that established treatments for the two types of problems, such as treating auto-immune disease with steroids, don't usually work for people with ME/CFS).

One of the most fascinating things that I learned in that second year of illness was that ME/CFS has characteristics of both types of immune system disorder:  parts of our immune system are over-active and parts of it are under-active.  This is sometimes referred to as a Th1-Th2 imbalance or a Th2 dominance.  Now, AP Biology was many years ago for me, so I'm no expert, but here is my understanding.  The Th1 and Th2 referenced above refer to two different types of T-helper cells, part of the immune system.  Th2 cells generally respond to viruses and allergens, among other things, while Th1 cells respond to bacterial infections (among other things).

ME/CFS is characterized by an imbalance, where our Th2 cells dominate.  This means, in simple terms, that when someone with ME/CFS is exposed to viruses or allergens, our immune systems over-react, creating the kind of cold or flu-like immune response I described above, all signs that the immune system is responding (even in a healthy person, most viral symptoms are caused by the immune system response, not by the virus itself).  This is why just being exposed to someone else's cold can cause a severe crash, even though we don't actually "catch" the cold and why many of us have problems with allergies and food intolerances.

On the other hand, with fewer Th1 cells around, our immune systems under-react when exposed to bacterial infections.  This is why people with ME/CFS are extra-susceptible to sinus infections and bronchitis.  For instance, Jamie and I rarely catch colds, but if one of us gets even a bit congested, it almost always leads to bronchitis, requiring treatment with antibiotics.  In fact, I had to go to the doctor's office yesterday to get treated for a bladder infection!

This also explains why those of us with ME/CFS often have bad reactions to vaccines, causing lengthy relapses or even acting as the trigger that starts ME/CFS.  It's not the fault of the vaccine: it did what it is designed to do and stimulated the immune system to create antibodies.  But, with our overactive Th2 cells, we respond with a prolonged immune response (i.e. crash) that would not happen in a healthy person.  I have long believed that allergy shots were the trigger for my own ME/CFS for this reason.  I have also observed over the years, for both of my sons and me, that our worst, longest-lasting crashes are usually those triggered by exposure to a virus.

This is a VERY simplified explanation of what is happening in our immune systems.  There have been lots and lots of research studies detailing dozens of different types of dysfunction in the immune systems of those with ME/CFS, and each of these problems causes other problems, in a cascade of cause-and-effect.  People with ME/CFS generally have low Natural Killer Cell function and all sorts of problems with our cytokines (where levels of certain cytokines are high and others low).  Much of this is beyond my understanding.

The best resource I have seen in all these years is an excellent article written by Dr. Nancy Klimas, published in 2007 in Current Rheumatology Reports, that details all of the known abnormalities in ME/CFS patients' immune systems and how these lead to dysfunction in the endocrine and nervous systems.  The paper contains dozens and dozens of references to scientific research studies that document these abnormalities.  Although much of the article is beyond my understanding, it is an excellent paper to print and hand out to doctors.  I especially like to give this article to doctors who don't understand ME/CFS or don't believe it is real because it provides lots and lots of hard scientific facts on the physiological basis of ME/CFS.  I think this one article alone can change the minds of skeptical medical professionals!  You can look at an abstract of the article online ordownload a pdf file of the entire article (it's 6 pages long).

OK, so that is a very general overview of immune system abnormalities in ME/CFS (please remember that I am not an expert in this field - if you see I have made a mistake in this post or know of other information that might be helpful to others, please share it in the Comments section or send me an e-mail).  I will try to explain how Immunovir has helped me in the next post.  Now, time to make dinner...

(P.S. 1/18/12 Addendum: Since I wrote this post last week, I have done more reading on this subject and have found that some research papers explain the Th1-Th2 functions differently, stating that response to viruses is a Th1 function (for which we are underactive), not Th2.  I don't know which explanation is correct, but the bottom line is still the same: people with ME/CFS have a Th1-Th2 imbalance which means that parts of our immune system over-respond and parts of our immune system under-react.)

See my new post on Treating ME/CFS with Immunovir for information on how I am treating the Th1-Th2 imbalance.

the author sue jackson - link to her blog

Friday, February 10, 2012

We'll come home

These words struck me as I was reading tonight - we'll come home - a phrase from Kristin Hannah's new book which explores the dynamics of a family where the mother's national guard unit it called to duty. These three simple words, spoken by her best friend and fellow pilot -

Last night, as I was in and out of sleep, I kept thinking about my bed at home and how much i missed it. I had my mom bring me my sheets and duvet cover, just so it would feel a bit more homelike.  And I know my three months here (where to most observers around me I appear to be a very young snowbird) are a very small sacrifice to pay in the grand scheme of things - but I still want to go home.  More importantly, i wish these were different circumstances for my visit.  Don't get me wrong, i am well aware that the best treatments could be in some god forsaken place and i could be staying at a Motel 6 - or my parents would need to mortgage their home to pay for my out of pocket treatments - or i would need to be here alone - there is a laundry list of criteria that i am ever mindful of that would make this experience much much more difficult.

 I ache to return home better than when i left.  The last two days the rash i get on my neck returned, inflamed and angry, and i had a tinging feeling around my mouth - and most of my skin felt like it was crawling - much like you think of a drug addict waiting for their next hit - and I knew that would mean i would get my blood treatment today - its a strange thing to crave - but when I am back in milwaukee and these infections build up on the surface in my blood, i have these symptoms for many more days, where I knew today they would be subsided.

My parents took me to my appointment, and i was very lucky because today's treatment went like clockwork - when we got back to the condo all i could do is crawl to bed - despite my sprite stained pants from one exploding in the car - i didn't care - i dove into the bed and crashed.  When I arose at 7pm I came out and everyone was eating carry-out from a the local Zin restaurant - and I nearly burst into tears - because that's all i wanted to do was join in, eat a burger or chicken sandwich - the sweet potato fries - but the last two times i ate there i needed a benadryl - who knows what it was - something in the bun - the seasoning - all i knew is i wasn't playing with fire tonight - its a silly thing - i'm lucky i don't go hungry - its more the effort - i just want to forget about all these crappy symptoms sometimes, and be normal.

and then i read a statement like, we'll come home, and the weight of those words hit me - they kept echoing through my head, sure, i get nervous all the time, when i'm here, what if i don't get home - but i can recognize that as an irrational fear - my worst case scenario is i come home the same as i left - and though this terrain is rocky and often unknown, its nothing compared to those in a uniform - those that coming home is no where close to guaranteed.  and that statement - we'll come home - is more a mantra than an absolute - those of you that have said that statement to yourselves in the dark of night - or to your family with a courageous promise - thank you.  though i may not support the war you are sent to - we all support you - as i read the term - "i've got your six" in flight terms meaning we have your back, a fellow helicopter directly behind - what a gorgeous phrase - may we all strive to be someone's 6 o'clock -

- the prologue of Homefront  by Kristin Hannah -
                                                    From  A Distance -
 There are some things you learn best in calm, some in storm ~ Willa Cather.

I have often described this illness as a storm, and though i feel i have learned plenty and also was quite self aware when i lived in calm - i will repeat these words again - and again - and try to learn all i can from this storm - as i hope i find my way back home.







Wednesday, February 8, 2012

A little blurb

what a wonderful day! first, after exactly a week post treatments i feel a bit alive today - which is a huge relief! and then i had four fabulous visitors that brightened my day - nothing like watching a two and half year old sing Jolene to make you smile - this child and i will be fast friends, she loved my comfy bed and dolly parton - can we clone her?  and now my parents have just arrived at the airport - xoxo

Tuesday, February 7, 2012

Ode to the birthdays

the fog has slightly lifted, so i decided to try and write the birthday post...

I know why I was day dreaming of birthdays i was actually remembering the 10 days before my 11th birthday when i walked into the house after girl scouts and there was an eerie feeling that was covering the air - and as i walked through the kitchen i saw my grandma and grandpa kelly sitting on the two wing chairs in the living room next to the window, and my aunt on the brown velvet love seat and my mom on the turquoise and lime green striped velvet sofa that i hated, that is until i saw the same sofa in the fabulous house of the perry's - gave it street cred as they say.... i remember that moment of thinking it so strange that at 4 o'clock in the afternoon anyone would be sitting in the living room - all with wide eyes.  that's when they told me that george - my dad's dad had died that afternoon - he had a heart attack while driving - and then the world shifted its core and nothing ever would be the same...but while my mind was drifting during the hydrotherapy of that moment in time, then i moved my mind to shift gears and remember my birthday parities - george had died on May 6th and my 11th birthday was May 16th - a combined party had been planned with my friends at dixon school that had closed and with my new friends from tonawanda - to be honest i can't remember if i ended up having that party - as i was lying coccooned in the blankets of the hydro treatment bits and pieces of birthday images came to me in random flashes...

the party with the cake that looked so much like minnie mouse, that george thought it was a pillow and put his hand through it

the party i was too little to remember but i was wearing a pretty yellow dress, with my hair in a high bun, wearing white sunglasses and holding onto my big bird stuffed animal posing for a picture on our rock wall in the front yard

the party where my cake had the little plump plastic characters from the Peanuts characters

the party where my cousin marybeth dressed up as a clown and made balloon animals

the party where my mom designed t-shirts to look like retro pink lady bowling shirts

the party where my mom silk screened blue and green t-shirts with the image of a carton of eggs open with one cracked and the phrase "heather cracked a dozen" and then the two teams went and played baseball and had a picnic in the park

my "sweet sixteen" where melanie and i were carded to see an R rated movie and we ended up hanging out at the mcdonald's until my parents came to pick us up

my surprise 17th, where the night before when a bunch of my guy friends stopped by i was confused to find every imaginable age appropriate drink in the refrigerator in the garage when i asked if anyone wanted something to drink, and then we went and cruised down hwy 100 with my dad's convertible. Then the next night was the party and i was shocked with a roomful of people in our basement with the forrest scene wallpaper and i got a stereo and my first ever CD - Journey -thanks nerd!

my 25th where my "boyfriend" pulled a no show but it didn't matter because my fabulous friends made it one of my favorite birthdays -

one of my mid-thirty birthdays where i was by myself in phoenix and spent the day at the phoenician resort.

many birthdays that my aunt would take me the week  before on a special trip to buy an outfit, and the one time we went to burlington coat factory i found this adorable lavender sweatshirt skirt and top with purple hearts cut out of the material - the same purple sweatshirt i got blood all over when i walked into a glass door in florida

many birthdays that instead of a present my grandma dreske would take me for an afternoon out to lunch and then hand me an envelope with a check

i saw an interview on the local news the other night saying that people either collect things or experiences,  and most of us to a bit of both - and it made me happy that when i was reflecting on my birthdays, despite i am sure getting really wonderful presents, that wasn't what came to mind - it was the time and effort and feeling that they all had - so thanks mom, dad, my sister and friends, for always making my birthdays special -






Monday, February 6, 2012

Between a 3 and a 7

Today, i have been no where close to functioning between a 3 and a 7 on the emotional scale, and after watching the kristen bell video below you will understand what i mean.  trying to get to my doctor appointment by 10am today, was so overwhelming i spent most of the time, fighting off tears while trying to get up, eat, feed sophie, get dressed - it all seemed like just too much.  And much like I can't understand how one comes to love a sloth to the point of tears, most people will not be able to understand just a normal morning bringing one to tears, so i will try to explain...

what it actually feels like to have chronic fatigue - its tough to explain, just like it must be to let your husband in on your breakdown at the thought of a sloth - so this is what i came up with - its kind of like the movie ground hog's day, where every morning when you wake up with moderately the same symptoms over and over, you begin to wonder if it all isn't just a dream.

In this dream, you took an insane exercise class - that you have never done before, then despite feeling awful (let's pretend you are in your early 20's) you figure, won't hurt to go out.  So you go out for the night and eat too much and drink too much.  Then your friend says, you can't drive home so you have to sleep on their old crappy futon and your so restless from being out and not in your own bed, they give you an ambien to help you sleep.  And as you are in your deepest REM sleep, muscles sore from your work out, stomach kind of queasy from too much of everything, head foggy from an ambien, just at that moment you are startled awake.

Sidebar - I have a true funny story about this, my cousin was doing a lot of cross country NYC to LA traveling for work, on this particular flight he was leaving LA on the red eye and would be in NYC in the morning where he would need to be bright and sharp for another day of work.  So as he said, he only takes an Ambien after his flight has left the terminal and gets air bound - so after they were cleared for take off he takes the medicine, and what feels like a minute later is startled awake by a flight attendant, explaining they have landed due to mechanical problems, and he needs to de-plane.  The catch - he's now in Las Vegas.  As he amusingly explained he is in the deepest of Ambien fogs and walks off the plane to the lights and sounds of the slot machine filled Vegas airport!  This is what i am talking about...sidebar concluded...

So, your day is beginning with this uneasy aching head foggy feeling, and despite being asked the simplest of questions like what would you like for breakfast, or can you take the dog out, you feel like you are being drilled by a Marine sergeant all the while being asked to solve complicated math problems.  Everything around you feels hyper-stimulized - and you begin to question, did i go out last night and drink and dance and eat too much all after taking a crazy spin class, and sadly the answer is no.

And days like today when you notice the weight of a fork, you wish it was groundhogs day and this was a big crazy dream.  This is what the worst of it feels like, and getting to my doctor appointment by 10am was an act of mercy, and i told her i sure hope i am having a difficult time seeing the forrest through the trees and despite knowing this treatment is the ultra marathon not a sprint - or quick fix therapy  i am feeling a bit deflated - thus the emotional roller coaster of despair (less than 3) and full blown optimism (more than 7) and I remind myself...i have a chronic medical condition, and these treatments turn the table on it and make it an acute illness so that my immune system wakes up and takes action - I can understand it rationally - and medically - emotionally some days its hard to take.

So, while i was going to write about my fabulous birthday parties my mom came up with when i was little, as that was what came into my mind as i was getting my hydrotherapy treatment - this is what spewed out - kind of like a good cry - when there are too many emotions, to get a coherent thought out - this is my good write - 

and on that note i will put the link to my favortite viral video, you can't help but laugh with her and understand that conversion of emotions that leave you speechless, and a good cry is all that you can manage - thank you kristen bell for sharing -

Everyone has had their sloth moment...enjoy! hope it makes you smile too!








Saturday, February 4, 2012

Forward

I must admit I am in a really bad mood.  I just left the grocery store for the second time.  I went once, got so fatigued and overwhelmed I got what I needed and headed back.  Rested, ate, and was irritated with this entire situation I got enough strength to go back.  I am also in a bad mood for reasons that need not be mentioned, just enough to say do you have that individual in your life that is like a tic under your skin.  And even if they aren't doing something that should make your skin crawl, it does anyways.  I remind myself of every cliche thing my mother would say about people like that, but despite striving to be my highest self - sometimes the tic wins.

And I don't know why but for some reason it seems to be the time to finally post the one I have edited over and over, and no matter what it never seems quite right.  Maybe because I know even in her zen higher self state, Julie would be able to put this tic under my skin in his/her place, so much better than I ever could - so if you are watching from above, do something a little sneaky!

I briefly mentioned Julie and her blog, www.cellwarnotebooks.blogspot.com in an earlier post, but it has never seemed sufficient.  I have never signed into this blog without thinking of Julie.  I had been putting off writing because I didn't have the energy, nor did I really connect with the blog forum - all that changed when I read Julie's words.

I think its fair to say that anyone who knew Julie Forward in high school and knew me at that time of our lives on the surface we were most certainly excellent examples of two sides of a coin.  Julie had a laugh you could hear across the hallways, she was fearless and could put most people silent with a look of those piercing eyes, she was an extrovert when necessary but held the mystery of an introvert.

But when I read Julie's blog, all I saw were our similarities.  This experience of connecting to her writing, is not mine alone, that was one of her many gifts as a writer, taking her experience and like a looking glass, it not only gave you a glimpse into her heart and world, it gave you a glimpse into your own.

Julie faced a terminal illness, which is night and day from my current challenge, and how she found the physical and mental strength to write during this time is awe inspiring.  Julie was also a mother, and to face the reality that you are not going to be able to be present for your child will always be a part of Julie's story that forever breaks my heart.  Julie was precise and poignant in her writing; these words will give her daughter an insight into her mother, that some of us never experience. It is an extraordinary gift.

Julie also possessed a physical courage in taking on the pain and side effects of brutal treatments and a brutal illness.  I think anyone who knew Julie, would expect nothing less than a fierce battle - and most days its impossible to believe she "lost" it in this world.  The years I knew Julie, I would have bet the house on her no matter what the wager.  As I wrote on her caring bridge page, she lost the battle but won the war.

One of my favorite parts of a book are the opening forward, dedications, acknowledgements and thank yous.  When I first got a kindle, I didn't realize I had to back page to find them and I found it impossible to begin a book without reading them.  They offer a tiny insight into the author before you leap into their world, true or fiction.  Some are very direct, some are cryptic, a special message only the receiver would understand.  I enjoy seeing a pattern of the dedications of the same author on their different books.  Its the author's Oscar Acceptance speech of sorts, without the fancy red carpet.

So, if this was a book, this is my Forward - My Dedication
Chronic Fatigue Chronic Hope, would not have been written with out the courage, hope and beautiful writing that Julie Forward DeMay paved in Cell War Notebooks.  It was her selfless exposure at a vulnerable time that opened me up to a journey I thought of taking, but my critical self was too scared to take. It doesn't matter what form this blog ever takes, it is in taking it that matters, and Julie you taught me that.  From the bottom of my heart - thank you.  You wrote a blog, that became a book, that will live on and inspire forever.


Thursday, February 2, 2012

Leap of Faith

The last 24 hours I have felt a bit like I was walking on a tight rope, just focusing on a point across from me to get to the other end of the line.  Balancing between feeling mildly sick and quickly going to the other side.  That's the flip side of trying to get well, the treatments often make you sick.  I did well until about four hours after my treatment and then without warning a massive shift began to take place.  I had to concentrate on my arms and legs, holding them tense to prevent them from shaking.  I was starving, and had the feeling of a blood sugar plummeting, all while feeling nauseous.  My left side, under my rib felt swollen and bruised.  It felt like a mild flu, I knew it could be worse, but that was the thing - I kept getting worried it was going to get worse.

I read an article where Michael J Fox said his favorite quote was something to the affect of, "if you worry about something and the worst case happens then you have lived through it twice."  I try to be mindful of that quote and stay in the moment, however most times I am not that successful.  It should have been a clue when at a young age I wrote a poem titled, What If... It seems I never was blessed with that wild abandon of a teenager, where life feels invincible.

I constantly question if I am doing the correct, or best course of treatment - and only when I begin to surf the web and see post upon post of people suffering like me and trying any number of drug treatments that are not working - I remind myself, there is no perfect path paved for this illness, and much like any illness there has to be a leap of faith.  Last night, I was staring out the window, I focused on how lucky I was, many more people have illnesses where their leaps of faith have life or death outcomes.  Others face illnesses where there is no treatment to be found.  So if I have to endure flu like symptoms to get to the other side of this, I can take that, its the worry in my head, will this get worse - what new symptoms may develop - what if on top of this I get cancer - the "thinking" of what ifs never seems to end.  My dad has always told me, "you think to much" and this is true.  If I was healthier I probably should have been in the CIA, I can't help but walk into a room or a situation and analyze every possible scenario that could take place.

I know personally individuals that have leapt over mountains for their health and in comparison I am jumping over foothills.  But perhaps that's the problem, the what if...I have never been  one to think "why me" more like, "why not me".  I have been in the extended circle of great strength, a double lung transplant, ALS, pancreatic cancer, severe shingles.  I have witnessed or been privy to stories of these triumphs and tragedies, and I think of the faith these individuals needed to have to go on every day.  I am not talking of faith on a sprititual level, faith in themselves.  Faith that they have more strength than they thought, more courage than they thought, more mental toughness than they thought.  Faith in the doctors that come in or out of their lives.  Faith in new treatments, faith in others that they will not disappoint when you need them most.

I swayed and lost my balance, but I didn't fall last night - somehow I had faith that it would get better not worse, and at 6pm this evening I was lucky enough to walk down the courtyard with my loyal Sophie and see a gorgeous Arizona sunset.

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