will i remember

I have a chronic condition, it could be worse - i could have a chronic progressive, for instance rheumatoid arthritis or chronic terminal - ALS or Parkinson's - but none the less - its chronic - and there are many days i wonder - will i remember what it feels like to be well?  Or has this new reality integrated itself into my cells to the extent that i won't have the ability to remember what i was like before.   I have those moments of relief, the brief one's where i feel exactly like i did before all of this - despite their fleeting nature they are tiny reminders of my hope that once i get better i will remember.  The longer this goes on, and you are continually forced to alter your lifestyle to manage this illness - which habits will take a firm hold and continue the path of dis-ease?  I continue to focus on the goal of stringing enough good days together, that a new rhythm will be born.  But what about all the habits that have been formed to make the best of each day...will i easily let them go?

I have had a few people mention to me that they didn't' realize how bad it had gotten or said they weren't sure how to approach me regarding this illness, and i take responsibility for that - i had been so afraid if i "acted" the way i felt - that it would be a reality that never left.  So i would do my best to get it together for brief moments of time - i had learned long ago dealing with panic disorder how to act completely differently than the inner turmoil i felt inside.  I also was struggling with doctor after f'ing doctor that kept telling me this was all in my head.  So for two years, I was fighting to stay above 100 lbs, fighting through a fog of crappy anti-depessants that i didd't need - and wondering if i wasn't just crazy.  That is not my story alone it is shared by so many of us suffering from this illness.  Therefore, it was difficult to know what to say or how to act - i was literally just surviving.

This past few days and the next two i have been and will be in phoenix by myself - and despite living many years on my own - its been rough.  This illness has forced an already cautious person to become hyper-vigilant.  We needed to make food in advance in case i couldn't leave the house, i have my doctor's home cell number because she is a saint, and luckily my good friend's schedule has allowed her to stop in last night and this afternoon.  I laugh reminiscing that i once counted all the places i had lived at from graduating high school until now - I had lived in over 20.  Sometimes alone, others with roommates, from Milwaukee - to Colorado - California to France.  I had no dishwashers, basement laundry, street parking...none of that mattered -  the point  - I loved my independence and I loved the constant change.  Forced to be dependent on other's is a reality that I had fought hard against in the beginning.  Its also difficult because as much as i would like to pretend CFS/ME hasn't taken a part of who i am at the core - it has eroded many of the characteristics i had defined myself by. I use to be comfortable in the presence of anyone...but now

Its a double edged sword, I need help, but it takes a lot of emotional energy if it isn't the "right" person - i don't mean the most loving, or nurturing - it takes someone you feel extremely comfortable with that has accepted this new version of yourself and doesn't expect to find the old one.

You remember when you first went off to college, became a new mother or father - or took a grown up job and with these changes met an entire new set of friends - and then you thought -  let's all get together - your "childhood - known you forever friends" and the "new" friends;  in your blinded excitement you are shocked that perhaps when these groups co-exhist they have nothing in common or don't bond - well bingo - they don't.  They know two different people.  They have different experiences with you and have formed their own "picture" of who you are based on their current information.  The beauty of your friends forever is that they are more like siblings - and they have formed a deep understanding of what makes you tick- the flip side is that its often harder for them to see that you have changed - and in my case not by choice.  This is how I feel much of the time - people see me, but no longer know exactly who i am -

I would give anything to be all the adjectives that I had been proud to define myself as before this illness -
I took pride that i was a loyal, dependable friend, easy to be around, could adapt to most any social situation, could give someone my full attention, loved to travel and go out to dinner.  I was an extremely hard worker, loved to volunteer, and could hang for hours with friends - but this illness has slowly whittled away many of the parts of me i was most proud of.  I just don't have the energy - I try not to focus on what i have given up, but it is the current reality - heck, for example i haven't been able to go and get my hair cut - i am now allergic to hair dye (which i loved) the smell at salons irritates my entire nervous system - i can't plan in advance, and i need a haircut that i doesn't require a blow dry or on some days even comb out - pony tail it is...this is the new reality.  I'm resourceful and find solutions, for instance my cousin Paul is generous enough to makes a house call - but its not the same.

I'm no longer the easiest dinner guest - since i have loads of foods you can't serve and i may cancel at the last minute- i have this insane sense of smell that if you are wearing too much cologne or have scented candles i begin to get a massive headache - if the room is too hot  i begin to get light headed - if there is too much stimulation and i am having a weak day i can't focus on all the conversations - i no longer can drink - which i never did to excess - but boy would i love to be back at Vitucci's with a Captain and Coke!  I get it - I look the same, and most days put my best smile forward and act the same - there in the language is the truth - its a lot of acting.  Everything that defined me so easily, i have to fight to save. So all of this together forms a snippet of my former self - and i have found some people have had a tough time knowing how to deal with this "new" person - hell - I don't know how to deal with her either!

So, I will tell you what helps - patience helps. understanding helps. kindness helps, a note or a text helps. Following this blog helps.  Accepting that i am a smart person and the treatments i have chosen i have chosen because i have researched it all and they are the best for me.  Reading about this illness and understanding, that maybe i didn't share all the crappy details because i just kept thinking - tomorrow - tomorrow they will go away - but many tomorrows have passed and i'm still fighting.

Its still me - but to pretend it hasn't taken a bit of who i am - that's just 'magical thinking (joan didion)' -

this makes me smile...sweet G.P.

this too...Addison

Water Color Sunrise

my favorite holiday came and went - you got it Valentine's Day...its not as exciting as you get older - but i love the possibilities mine or another's that it holds.  It's a good news April Fool's day - you just never know what can happen - sure most come and go with nothing out of the ordinary but then there are those that you get a message or note from someone you never expected and it makes your heart swell.  The generosity of someone going an extra mile to let you know you are special to them, whether its a friend or significant other.

well, this valentines' not only did my heart swell - but apparently so did my spleen and liver - i'm not particularly concerned considering my high Epstein Barr and Cytomegalovirus titers - this is not an uncommon result.   if they don't improve in a few weeks - i'll get an ultra-sound.

but the best gift on Valentine's was for almost 12 hours all my symptoms magically disappeared.  It was a piece of heaven - and then yesterday it all came crashing down - and most of today - but by three o'clock i had enough energy to walk up to the hotel and grab a coffee and sit on the adirondack chair with sophie by my side and i just pretended i was like all the other vacationers - and for about an hour i felt like it. the joy of the everyday.  i people watched, sipped a coffee with no reactions - and even took a few touristy pictures -

i've had a bit of a mental block trying to write - but when i am drifting off to sleep or in the shower, i am constantly thinking of the idea of the perfect sentence. it doesn't come often or easily - and some of us can maybe hope for one in a great while...

when i was in france with my grandma and mom we went to the "musee de l'orangerie" in paris. we had just returned from Lourdes so my grandmother could get the healing water - and let me tell you that place is a bit scary - even my grandma couldn't wait to leave...and i don't doubt at one point it was a very healing place, but now its an over-run town that will sell you anything with the virgin mary slapped to it - but when we walked into the lower level of that museum in paris where in a circular room you are surrounded by these massive Monet's it takes your breathe away - and i said to my grandma - this is a miracle and my die hard catholic grandmother understood.

there is some beauty that transcends your senses - it takes you to a different place as you try to wrap your rational brain around it - the perfect sentence has the same transcendent feeling - the books that stand the test of time are those that string perfect sentences together again and again and again - the idea that  all these words are available to us, yet someone put them together in a way no one had thought to before is magic.  

i have always loved words - i loved in kindergarten our letter books - i still remember the glittered "A" Apple book, the feel of the number two pencil gliding across the shiny pages - and then later learning how to "diagram" sentences - noun - verb - adverb...i loved being in the elm grove library summer reading program...i knew i was sick when i no longer could read novels - the effort it took to read a book would take me days to recover - and i had to be careful to take breaks - rather than spend an afternoon immersed in the other world.

the arts always hold us hostage to beauty and when you are not well you have to remind yourself that its there around you for your taking.  and the arts are different for everyone, ellen recently had a man who after a skiing accident is paraplegic - yet he has found a way to still ski and complete an arial jump - he described movement as his form of art and expression - and the joy it brings him.  joy - when you are fighting through a chronic illness its hard some days to find the beauty around you - but you can't lose sight that it is there.  the place i am living we have been gifted with some of the most gorgeous sunsets - as i jokingly said - "people would pay big bucks to see this..." on the worst of the days the world seems black - and its hard to believe in the power of a Monet, the perfect lyrics meeting the perfect melody, a two doves that sit side by side on the iron fence outside my bedroom window every morning - or the perfect sentence - but they are there - and in our darkest hours they save us - some days you have to fight harder to find them.

i know i have been privileged to be exposed to the arts - and i don't know what it is like to live in a world where i have been deprived of that knowledge and experience - my hope is all those out there fighting to bring the freedom of the arts to those less fortunate are continued to be supported.  thanks mom and dad for giving me that gift of exposure and travel - and i will fight to the end to get back to that museum in paris and find that piece of perfection on earth.


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okay - i am so expletive proud of myself for figuring out how to get these photos from my phone- to my computer - to this blog i don't care they are not in the correct spot - okay Apple - you are growing on me! fyi i know sophie looks miserable but it because poor thing when i bent down to take off her leash my Fiji water fell out of my sweatshirt and nearly hit her - so she was still recovering!!


*water color sunrise - credit to willy porter song*


also a shout out to my dear friend who we use to walk along lake michigan many moons ago - thank you.

burdens

we are all just little fish swimming up stream - gasping against the current - the current is strong, the obstacles many - like the salmon we swim with all our might - while the river will attempt to crush you - never ever give up the sea is within your reach.

the following video is difficult to watch - and quite frankly scared the hell out of me but only re-enforced that i although my treatments are unconventional - i am blessed to be getting them - i recently re-read some of julie's posts and the following George Herbert quote was in the comment section - None knows another's burden - isn't that the truth - so my wish to anyone is may they find the strength they have - the support they need - and the understanding they deserve.

please watch and send healing thoughts this man's way

i am thankful

on a lighter not i just accidentally hit some button that replaced my post with another i wrote, and couldn't retrieve what i originally wrote and i can't figure out how to get rid of the above background color -- that i find quite distracting - and get to the default - seriously i bet a five year old could figure this out - time for bed

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

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.

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

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 -