Its a bit quieter here today. My sister's family headed home, and I will miss the constant random hugs and "i love you heawa" that a 3 year old gives so freely. And little GP with his constant chanting "pa pa daddy" "pa pa daddy". I'm really happy that my parents are here for a few more days, and then its the final 30 day push. And today, we seem to be on track, because I once again had another blood treatment, so I am getting stronger and able to handle more, but handling more also meant a "healing crisis" as they are known, chills, body aches, headache so I am currently in bed - but my mom stayed home from golfing to hang with me -
People often wonder why I don't take Diflucan for the Candida, Antibiotics for the Staph and Strep, and then there is the CMV and EBV elevated titers, I could try some anti-virals - but there are a lot of problems with that - first, it doesn't solve the problem of a dysfunctional immune system. I have read many blogs of individuals on years and years of antibiotics and they still have infections, and then what has that done for their innate immunity but possibly create and antibiotic resistant infection. You can also think of antibiotics as sweeping through your intestines, and the infections can seep into the crevasses of that very long intestinal tract, and therefore they dig deeper into your system - thus only to re-appear later.
My goal is a cure, not a band aid that could also make me worse off than I am now. Tonight my "favorite" medical correspondent Dr. Nancy Snyderman spoke just on that - the World Health Organization's extreme warning of where we are headed if we don't stop the mass overuse of antibiotics. Medicine got themselves into this problem, and I often find that Naturopathic Doctor's face a double standard, people question everything that we do, why why why - yet there is a massive amount of individuals on anti-depressants despite study after study showing that they alone are no better than a placebo. But yet the ND's get the constant scrutiny, and I am a bit tired of it - I am trying to get to the source, and build up an immunity that was destroyed somewhere along the way - perhaps even because of the traditional medical worlds narrow focus on healing.
Once again, don't get me wrong, I believe there are fabulous MD's out there, but the focus of Western Medicine has become so specialized that the chronic illness have gotten lost in a sea of specialists. And I went to them, I went to the Disneyland of Hospitals, the famed Mayo Clinic - but despite their interdisciplinary approach, I hadn't yet seen the endocrinologist, and they focused on my anxiety - anxiety I stated again and again was brought on by the massive weight loss, intolerance of heat and extreme fatigue yet the primary care doc never did a full thyroid panel - setting me back months and months, because I trusted them - I figured I am at the Mayo Bleeping Clinic - if they don't think I have a thyroid problem then who I am to fight this...
So back to the 30 day plunge into the 30 day abyss - I am fighting as hard as I can -letting someone else take control - you lead i will follow - like I said before, poke me prod me ozone me UV light me hydro me - just let me turn the corner - and with all the support I have been getting from my writing - it has lifted me up and I THANK YOU - this has been an eye opening experience - and I have received support and love where I didn't ever see it coming from - I also knew when I started telling people that I was writing that I needed to have thick non judgmental skin, and I feel that I have succeeded. There are areas where I blindly thought support would exist and it has gone silent - but that's okay - its not my need or place to require support anymore. There have been many people the past few years that have seen me and thought I lived a life so different than what I was living, this is where growing up with a heightened awareness of others, anxiety and learning to live with an uncommon illness have shaped me, and has taught me, tread lightly respect others where they are at, not where you wish they would be. And never forget you can always be surprised when you least expect it. I have everything I need from those that I hold so dearly and many more that I hadn't even known existed - I am humbled and blessed - and maybe this was the missing link that will give me the strength to push me to the other side.
It happens, just as I feel I really cannot mentally gear up for another day with this illness, just when I want to scream give me a few days of normal - please - just when all that is crashing down - I get hope. This week - despite having my period - which really knocks us CFS'ers down - I was strong enough for two blood treatments, one on Tuesday and one Today. It took me completely by surprise - and my normally very prepared self - plenty of fluids, a dense protein meal - mentally gearing up - I did none of that - and I was able to handle them. Tuesday was a breeze - twenty minutes - bing bang boom - Today, oddly I was not hungry for lunch - so I went to the doctor with a sandwich in hand - but hadn't eaten since breakfast - and for the first time in a long time when she said - you can handle it - I didn't self doubt. So despite not having any of my normal precautions in hand, and despite by blood being thick and black (most likely due to bacterial and viral die off) so what took 20 minutes Tuesday took over an hour today - but I wasn't light headed - I didn't need to drink sugary beverages, and I felt a sense of calm I haven't in a long time. Progress. There was no doubt I am stronger.
Part of it was I don't care anymore, poke me - prod me - ozone me - IV me - hydro me - color puncture me - I don't give a damn what you do to me - just make me better. This optimism may fade, and that's why I intend to have it in writing - but today - one hour ago - I didn't have to force hope - i believed - I will get better. I will get better. I will get better - and maybe in part because I have just had enough.
I've had a really bad sore throat all weekend, and today when I went into the doctor my lymph nodes in my neck are really swollen - perhaps they have moved down from sub-mandibular (under the jaw) area and down my neck - fine with me they can keep on walking right on out of here!
My family has been in town, my sister, her two children and my parents. Plus this weekend my Uncle who lives in California came for a quick visit. For some odd reason having all my family here has made me homesick - which seems strange. I guess all these reminders of home make me miss my actual home. Not that I should complain, since where we are staying is so gorgeous - but its not home. And as much as I like to pretend that I am a very young snowbird, that's not the case. Addison has decorated my walls with a few of the pictures she found that I had in my drawer next to the bed, so now on the wall and glass door hold random 4x6 snapshots. I also had my mom bring me my sheets and duvet cover from home on her last visit - which each night I am grateful for.
Also - having everyone here, has made me acutely aware of how little I can do - when its just me and Marc here, we get into our monotonous routine - breakfast - lunch - drive to Dr. - drive home - rest - maybe swim or short walk - dinner - tv - bed - wake up and do it all over again. But the hustle and bustle of a 3 1/2 year old and a 1 1/2 year old on a vacation has stirred the pot. And as much as I love it, its frustrating to half participate. There are many brights sides, one being the good night routine with Addi - we watch a bit of a movie, then stories - and her unknowingly kindness she freely gives can break one's heart. For example, yesterday when I got back from the doctor she was having a party in my room - and when I said my throat was really bothering me - she came over and kissed my neck - and then went about stirring up her colander of soup for the party - complete with ripped kleenex and my iPod headsets as the ingredients - if kisses from a three year old could wipe out this illness - I would be currently cured.
Kindness. That little kiss - or out of the blue - I love you - or hug from a not too steady 1 1/2 year old make me yearn to be better before they realize one of these aunts is not like the other...that most adults don't spend the majority of day in bed...but for now they don't notice a thing - but I do.
Last week, I opened up my Facebook page and there was the following message - ...you are awesome! you are so sweet and always recognize and notice everybody! yep, you are officially going to heaven!"
I can't tell you how it made my day, and also made me a bit confused, because Sophia, who left the message and I though we went to high school together, same homeroom, she is not someone that I have regular contact with - and when I commented that I don't know what I did, but I will take it - she replied "It shouldn't be unexpected...I think I speak for everybody! Yep, I'm the spokesperson" -
Kindness - it goes a long way - and the days like today - when I can't seem to concentrate well - the words i want to say aren't coming freely - my neck has hives - my eye lids are rashy - and I would really rather have gone to Nordstrom with the gang than be in bed and I begin to wonder besides being extremely high maintenance what the "f" am i doing that really matters anymore...then I force myself to be grateful, to focus on that unexplained message - that doing "something" isn't something monumental - this illness has forced me to re-evaluate my definition of being accomplished - and that simple Facebook message meant more than the author could have known - because it reminded me again of the power of kindness - and if i can accomplish that - that is enough. It took an unsolicited message to wake me up again - so thank you.
A friend of mine has started a website and Facebook page dedicated to just that - random acts of kindness - I encourage you to join it - Uncommonly Kind - there are wonderful stories - and this is one I will add -
Doubt, Despair, Dependent - that's how i have felt the past 48 hours - I normally have a few bad hours, and then a little break, like the light shining through a bunch of storm clouds. But the last 48 hours the word fatigue doesn't even describe it - I don't know what dying feels like, and perhaps there are many experiences of that inevitable fate, but as I was laying in bed - I kept thinking, I feel as if I am slowly dying - For the firs time since I got here I didn't think I would be able to get to my appointments - but the knowledge that I may feel better afterwards willed me into the car. When I got to my appointment my doctor realized that I had a fever - and that was HUGE! I never get a fever, never ever ever - I don't sweat either - both signals of a dysfunctional immune system. This means progress - I'll take progress -
Last night while I was getting my hydrotherapy treatment a song came on the radio - and I'm not even sure if it was Dolly Parton - but her wide smile came into my head - and I thought to myself - a world where Dolly Parton exists is a world filled with hope - if Dolly can pull herself out of a shack in the Blue Ridge Mountains - then there has to be a way that I can find a way out of this - despite this illness not obeying the rules - because often the harder you try the worse you get - but there has to be a way back to my old self - so I have another D to end the day - a bright face of hope - thanks Dolly!
And today - the fog has lifted - my back pain has lessened the fever is gone and the best news yet is in about 1 hour my family will be here - lucky.
Last May I had the dreaded experience of heading to the DMV for renewing my driver's license. You remember the old days when you had to renew it every three years or so - much more of a hassle but at least you didn't have to relinquish your 8 year younger self as I was about to do - and I wasn't to happy about it! I also remember the kinder years of the DMV before they were strapped with budget cuts and a minimal staff, the jovial camera man who would actually re-take your picture if you didn't like it - those days are long over - in fact while I was there I got a notice that soon they would be taking your picture, but sending all the info to California and then you would get your license in the mail - no more waiting in vain on the plastic chairs with everyone else's anticipation of the most likely awful photo. Everyone, including myself, tries to play it cool; so you saunter up when you name is called pretending that you don't care how it turned out. Some of the most laissez faire - resist the immediate temptation to steal an obvious glance while in front of the gallery, patiently waiting until they are alone in their car.
I took my sister for her driver's test - I'm five years older - and I still can't decide if my parents thought she would be calmer with me or they didn't want to be there if she didn't pass! Nonetheless, I swear her smile was bigger and more proud when she picked up that picture than it was when she passed the test. While she was out on the road test, I had renewed my license and while it wasn't the worst pic, it certainly wasn't great. What was so entertaining about her photo was her pride in its faboulousness! When we got home, my mom and I kept stealing glances as she held out the picture like a trophy - but in fact it was - a good DMV picture should come with at least a medal.
So last May, I was relieved that they no longer make you hand over your old ID, because I still use it ( I don't think the cashier at Nordstrom is looking at the expiration date) - not only because I am eight years younger in it, and its a much better picture - but I have a jaw line and a chin! I've never had a prominent chin, so taking that less than stellar jaw line and adding a bunch of swollen congested anterior lymph chains, and there goes the chin. So when I went and picked up that ID, that's all I saw, this double chin puffiness quality to my neck - and every time I pick it out of my wallet it irritates me -
Last October when I returned from Phoenix, a number of people commented that I looked a bit different - and I did - much of the swelling had decreased. But this trip it has gotten worse as my body works harder to eliminate these infections. This week all my treatments were aimed at improving the lymph flow, and it seems to have worked. Last night after about 6pm I was really in rough shape. I was so fatigued I had trouble swallowing despite being so hungry. When I get that tired, its like all autonomic functions are no longer automatic - so three times during dinner last night I was forced to spit out my food when the act of swallowing wasn't coming naturally. After I finished, I climbed into bed and it felt like a super powered magnet - pulling all of my limbs downward, making it difficult to move in any direction. After about an hour of silence and being perfectly still, a little bit of life began to return. My boyfriend came in the room to see if I wanted to watch Blue Bloods, I felt good enough to sit up in bed and watch an hour of TV, happy in the normalcy it gave. After the show, I forced myself up to get ready for bed, and as I caught a glance of myself in the mirror I did a double take - no way - I could clearly see my left jaw line. I can not explain what a sense of joy that brought, not only because the left side of my face looked like I just got a little nip and tuck - but because it meant progress -
I don't know how long my newly slender left side will hang around - I am guessing it may cycle in and out of swollen and not - but for the first time in many moons - my chin was back! And let me tell you, if this holds, the first thing I am doing when I get home is heading to the DMV!
I've been craving apples lately - when I was little I have fond memories of being on a blanket in the side yard of my cousins house, playing with Barbies and picking the green apples from their tree - with the white plastic salt shaker never far from reach. I miss apples. But more than missing apples I miss the ease of going out to dinner and not worrying about what ends up on my plate. It seems just as I have gotten this fatigue improving, these food allergies have come crashing down, and once again limited my freedoms - somedays it's like wearing a house arrest monitor without the sore ankle. And just as my pity party was gaining steam, bring out the party hats and noise blowers - a memory flashed to the forefront of my brain and it snapped me out of it. The truth is I can still go out to eat, I just often need to eat before. I can still move freely, though often stiffly - and there is hope i will continue to improve...
The memory that flashed was my junior year of high school. I was doing the rounds figuring out what colleges to apply to, so my parents and I were attending a Boston College informational meeting at Turner Hall in downtown Milwaukee. It was a cocktailesque meet and greet with Boston College alums. While there, we ran into a partner from my uncle's law firm, (and I don't know why I remember) but I am pretty sure he had a red sweater on - a subtle shout out to his UW-Wisconsin alma mater where he still held a track record. He was attending with his younger brother (I believe Oliver) and I recall being a bit jealous because it seemed awfully cool to have a hip older brother showing you the ropes rather than your parents! More likely it made an impression because that's just how Jeff Kaufman was - he was a person that without much fuss could make a lasting impression. The type of person that recognizes the importance of eye contact and can make you nervous because you realize someone is actually listening to what you are saying. That was over 20 years ago and though the specific details of memory may be blurred this first impression was forever embedded with a lasting imprint on my mind - nothing special about the event, or even the memory, but something was special about the person - little did my adolescent brain know how monumental special he was.
Shortly after that initial meeting, Jeff was diagnosed with ALS - Lou Gehrig's Disease. I faintly remember the whispers of something being terribly wrong with my Uncle's partner and dear friend - the initial doctor appointments ruling out various reasons why Jeff had difficulty walking up the court house steps - the unexplained falling - slowly these whispers gained volume as the diagnosis was cemented and the daunting new realty the Kaufman Family would soon have to face - the defining line of before and after.
I only saw Jeff, his wife Jan and their family a few times over the next 20 years, all at fundraising events for ALS. I remember the first one we attended while Jeff was still only showing minor effects of this terminal illness. A fundraiser at Miller Park before a Brewer's Game. There were tents and food, a jovial atmosphere yet I can still feel the intimidation I carried, staying close to my cousins, not wanting to lock eyes with any of those attending that were prisoners of ALS. Those individuals trapped in bodies that had been ravaged by this illness, knowing their mind was perfectly intact - it scared me - I didn't know how to act. It terrified me that this illness existed in real life - no longer something I may read about - the torment of this illness was right in front of me, and I couldn't reconcile seeing Jeff from a far and knowing this was his most certain fate. How, how does one go on?
The last time I saw Jeff was a number of years ago at the yearly ALS Evening of Hope Gala - I'm sure I said hello, thinking back I should have told him what an impression he had made on a 15 year old girl many years ago - that dashing dark haired red sweater wearing uncle - but I probably just said hello, and made small talk about what a great event it was; my lips moving while my brain was having a separate conversation chastising myself of how lame this conversation was - but that was the cruel reality of ALS - unless you know someone well - a quick two way conversation is not possible. So, the benign one way pleasantries of a not so pleasant reality was what sufficed. And I walked away feeling empty - knowing I had done my best, but well aware of the reality of a forced normalcy that Jeff had to endure, being helpless to verbally respond.
Jeff, his wife Jan, his family and close friends are heroes of optimism - heroes of support and perseverance - and I have been so blessed to be sprinkled throughout my lifetime with these amazing examples of strength and love- I always meant to write a note to Jeff and Jan - but never quite knew what to say - just as I have heard others mention to me - and how sorry I am I didn't - its not in what you say - its in taking the time and effort to say it.
Jeff waged a historic battle against ALS - he had that "je ne sais quoi" presence about him before and after - and that is what I saw and felt all those years ago at Turner Hall - when you are in the presence of someone exceptional - it doesn't matter if they are doing something exceptional at the moment - its that sixth sense of what they are capable of - Jeff was monumentally capable in spite of ALS.
As I went to sleep, my pity party quickly disolved with me thinking - who the hell cares if I can't eat apples - I can go to bed with the hope and reality that tomorrow can be better. Something currently only a dream for those diagnosed with Lou Gehrig's Disease.
Life for anyone is a balancing act between recognizing your blessings and honoring your misfortunes. Between giving respect to your personal experience without loosing sight of those with far greater burdens - the following copies of Jeff's article from Newsweek and links to his Obituary are re-printed with blessing from Jan Kaufman - Thank you. May your family continue to know what an amazing example of love, hope and integrity you have shown to so many - and may your endless efforts for a cure be realized in our lifetime.
The following are two links, one from the Milwaukee Journal Sentinel and one from Jeff's law firm, I wanted to include the links rather than copy, because they include photographs - Jeff Kaufman Tribute Milwaukee Journal Sentinel
And here is Jeff's Newsweek Article, which I would be remiss not to acknowledge that Jeff did not have the luxury of typing this - it was painstakingly completed with his special computer while using his eye movements - Exceptional.
From Newsweek Magazine - September 10, 1995 Digging Your Own Tunnel - Jeffrey Kaufman
Every now and then during your lifetime you read or see or hear something that so exemplifies your existence. or a part of it, that it's almost painful I recently had such an experience while watching "The Shawshank Redemption," a movie about the effects of life-term imprisonment on hope and the human spirit. It's also a good metaphor for my life with Lou Gehrig's disease (or ALS).
I have heard it said that ALS is like being a prisoner trapped in your own body. I have always thought that this is an oversimplification. By providing an in-depth look into the experiences and psyches of various prisoners, this movie took the metaphor to its proper depth for me.
The story begins with the main protagonist, Andy, being sentenced to two life terms for double murder. On his first night in prison, he is faced with the enormity of his situation. This scene evoked my memories of receiving the sentence without hope: a life with ever-increasing disability and death within three years. I remember lying alone in that hospital room with little hope or sense of future. The enormity of my nightmare hit me as I thought about my wife and kids, money, my job, and my kids some more. I never thought about myself, not because I'm unselfish, but because I'd written myself off. I prayed out loud for the first time since I was small, asking for a reprieve so that I might see and help my young kids grow up.
Like Andy, my first two years were the roughest. He was regularly beaten and forced to compromise. In my case, I was constantly fighting--with myself and sometimes with others, as the disease continued its relentless violation of my once dependable body. As I watched the film, I remembered the stitches, head bangings, cuts, bruises. torn muscles and strained ligaments that resulted from my efforts to maintain normalcy. I recalled the frustration that came with each grudging compromise: walks and the exercise bike instead of runs and swimming; leg braces: no driving; working at home: wheelchair. I remembered the depression that came when I was forced to ask for help with my progressive loss of freedom.
The movie illustrates how Andy's reaction to the loss of freedom is different from most of the lifers'. Most of the lifers simply surrender after a while. Andy finds ways to assert his status as a thinking, functioning human being despite the limits of prison life. He establishes his worth to others as an advocate, financial manager and librarian. He has long-term projects, a chess set and a tunnel that takes him 19 years to dig. He never gives in. He finds ways to grab moments of normalcy, like playing music and drinking a beer. Andy's ability to affect the lives of fellow inmates is most important to him--he can cause things to happen and make people react. Andy talks about hope making a man free. His philosophy is, "You can get busy living or get busy dying."
I thought about my reaction to imprisonment and recognized that I have both an Andy and the other type within me constantly doing battle. The daily opportunities to surrender to the isolation of physical limitation. The temptations to give up something else. And how each day brings chances to participate in life, to fight against the forces that imprison me, to dig my own tunnel. It's easier to withdraw to my cell. As time advances and the disease progresses, everything gets harder, not only for me but for everyone around me. It is more difficult to affect the lives of others in a positive way. The walls close in. I become more of a spectator in order to ease up on the people around me-and on myself. I wonder if I could return to normalcy if my tunnel's ever finished; if I'm strong enough to sustain the effort involved in coming back; if I'm too comfortable with my isolation.
I became more convinced that death would be easier, but I've found reasons to live. I know that without my children and without the hope medical research offers, it would be very easy to give in. Andy makes his own hope. I have mine given to me.
I rely on images from my life on the outside for the motivation to "get busy living." I can see and feel myself doing things like holding my children, playing with them, eating certain foods. The movie echoes these reflections. I thought of how much I resent the necessity of asking when I need a shower. food, the bathroom, to scratch an itch or change channels. I've learned to ignore many of these things to avoid asking for help.
The movie's visual images were especially evocative. There's a scene where inmates, working on a roof, rest in the warm sun, drinking beer. I recall the great feeling that came from finishing work and resting with a beer on a hot day. There is a shot of Andy, recently free, in the rain, reveling in the interaction with God's natural forces. I took a lot of pleasure from running, playing ball, standing in a rainstorm. Quite a contrast to now, when I can't brush away a drop of water from my eye or hold my head up.
Another image from the movie is of a freed man walking along a country road, farm fields on either side, the sun casting a golden haze over everything. Having spent much of my youth in rural areas, I felt as if I was seeing country roads that I'd enjoyed as a free man. My youth came flooding back. Making hay, working road construction, riding horses and motorcycles, swimming, just sitting. I thought how desperately I want to have the pleasure of walking again.
What really struck me was Andy's dream that motivated his tunnel-digging. He envisions life in a small fishing town in Mexico. Warm sun and water, cool breezes, cottages and cafes lining the beach, seafood, snorkeling, deep-sea fishing. I knew the place exactly. I had been there on my most memorable vacation, nine months before I was diagnosed. I was experiencing symptoms, but nothing that stopped me from doing anything I wanted to. It was the last time I would feel that freedom. In the six years that have passed since that vacation, its memory continues to provide a picture of the pleasures life offers to free men.
Images may fade. As does the motivation. However, life can replenish these things. Sometimes it takes something like this movie to remind me to get busy living. Hope can live for as long as we're willing to dig. Even for 19 years.
