The Adventure Continues

I am bad about writing blog posts.  That is said with complete honesty.  At some point when I was really working towards a career in writing I began telling my story of living with a disease called Lupus.  Quick backstory for those of you who don't care to read archived posts - I was diagnosed in  1993 and told I had about a ten year life expectancy.  I get the last laugh on that one.

What prompted me to lay this out is that may of you have traveled this road with me, knowing the adventures of  living  with a chronic illness.    Many of you have no clue what I am talking about or even the fact that I live with this challenge.  Many of you have challenges that I do not know of or understand.  Enough history.

One of the treatments that has saved my life numerous times (last summer for instance) has been treatment with high doses of Solumedrol.  Part  of my journey  has been coming to terms with the fact that I have Lupus Cerebritis, and only a small percentage of those diagnosed with this autoimmune disease have manifestation in the central nervous system.   In short when the disease is active in me medical professionals have needed big guns to swat back the dysfunction.  I compare it to needing an elephant gun to kill an elephant  since trying to use a  fly swatter just pisses the elephant off.

Yesterday I went to  see my rheumatologist who I affectionately nicknamed "Mr. Bean" when he first treated me in 2013 during a vacation at St. Joseph's Hospital.  I have  been experiencing some pain in my left  hip for about a month prompting my visit.  After talking with the doctor about  symptoms and his physical examination,  he promptly wrote orders for me to have immediate  x rays.  He began explaining that the high doses of the medications that have  saved my life could be causing femoral necrosis.  As he proceeded to tell me the potential horrors  of  treatment, I tuned out  thinking back to   Dr. Vandenheede  who  told me of this mysterious side effect of a medication that was restoring my health probably twenty years ago.  It seemed silly to think of those things back then when the land of what if was so far away.

Well guess  what?    Like going to the bathroom so your food will arrive,  I just received a call from the doctor saying there was no obvious evidence of necrosis.  Verbal vomit complete.

Sometimes I even invite you to join me on  the e-ticket  ride.

Moving to Phoenix - Summer 2013

From Show Low, Arizona — July 1

I am alive.

The story is long, well nearly two months long. The first hospital that I went to sent me home in a cab. July 5th I ended up in St. JosepIh's Hospital after Haylee and Andrew had the fire department break in my apartment door after I didn't respond to phone calls or knocking at the door. They found me in septic shock, incoherent. The next few days I have no memory of, pieced together like a really bad blackout from fragments. I do remember thinking that I was on a submarine. Hallucinations can be nautical? Blood infections can be deadly and so can submarines.

Days in ICU - eventually the medical team was able to stabilize me and send me to a med/surg floor. Tests began along with two pieces of paper taped on the wall by my bed telling me where I was, who my daughter is, and that Tobie and Lara were taking care of my cats. Roots to reality.

Countless MRI's and CT scans only revealed that I was very sick stemming from a mrsa  staph infection though the approximately 20 specialists could not pinpoint the source. Think Benny Hill moving in a herd of white coats. Surgical teams started visiting me along with the infectious disease folks. The infection process was attacking from the outside in, and I can't tell you how many different surgeries I had before they just sent me to the operating room for the final one. Didn't want to see, know, or tried not to hear what they were talking about. I just asked that they make me well. Fix it.

It is said there are no atheists in fox holes. I have faith in a power greater then me, but this experience drilled home the fa

ct. Over and over again. After the final surgery (and before) I kept telling the doctors in my team of twenty that I was getting better. Pain is a force that creates a spiritual need to fight or give up. If you didn't notice I am a fighter...

Thank you Tobie and Lara for bringing me music. The connection that the soul has to sounds is a healing force that cannot be denied. Thank you all for the thoughts, calls, and prayers most of all. I felt the healing force of you all.  If all one can do is listen to music, plug in to the symphony of sound that awakes the soul.  

Mid July (after the hacking party I told the surgeons it was called) I began the massive antibiotics . I also realized what people in the military talk about when  they describe MRE's. One day I had given green jello that looked like it had kryptonite ala Superman. The same day I had a rheumatologist that looked like a French Mr. Bean, Surrealism and no hallucinations. Yes I was on pain meds. I'm not that tough, and I wanted to keep healing. I ate and drank whatever they put in front of me and kept asking for real fruit and green food even if it was unidentifiable. Peanut butter banana protein shakes too...

Eventually I was hooked up to a wound vac (high tech device to help heal from the inside out on super deep incisions - developed to help those in the military initially). This bought me freedom to go to a skilled nursing facility. One Flew Over the Cuckoo's Nest meets Machiavelli. You get the picture. The music again kept me sane and helped me tune out when I needed to do so; thank you Alan and Bobbi for the M&M's too.

July 28th I was sent home for home nursing for wound care and antibiotics. I was able to move in to the place that I had moved to a month before. Thank you again kid for you and your man's help with unpacking and helping me feel at home. Guess I was released from the wound vac a week ago yesterday, and I looked for the first time at the wound on my flank. To be honest I almost passed out. Yesterday I gave myself the last dose of IV antibiotics, and today my nurse pulled my IV line. Just one CT scan to go in September before I am released from this saga.   My recent lab work looking for Lupus markers came back essentially  negative.  That ma,es me wonder how much of this adventure was negligent care from the initial treatment at St. Luke's Medical Center.  That is a question for the legal system.

So what did learn from all of this? Have faith, even in a submarine because eventually you will see the light. Screw fear - even when the evidence appears real (see faith). Be grateful for the small miracles because they add up to big ones. Tiny steps equal miles eventually. Love each other. We are each exactly where we are supposed to be with the right people in our lives.

Tell the people that you love that you do - often, and most of all show them. You may not get a second chance.

The Wolf

It is snowing right now outside, covering my immediate world in a blanket of white that mutes the sounds of life.  How I came to be living in the northeastern portion of Arizona I am not sure.  I grew up near the ocean. The sound smell of surging tides is where my body and soul find an unearthly connection to peace.  Only by its absence does the heart and soul really know what nourishes its existence.  

I outrun the wolf…

My journey began after the birth of my daughter and the natural hormone changes brought about by pregnancy, childbirth, and nursing a baby.  I have been reflecting as 2012 draws to a close how the disease of Lupus has changed my physical being with its internal assault on my brain and central nervous system. Those aberrations have occurred in chorus with the changes to a person’s framework known as a skeleton.  Like many allopathic remedies, the drugs that stop disease processes often cause irreversible harm. Prednisone sucks the strength from bone but it has also given me life.   Do I feel as though I suffer from a lack of bone density?  Not really, though that perception may change once I fracture more than a toe or finger. 

Treatment for Lupus Cerebritis ranges from massive doses of Prednisone, its liquid cousin Solumedrol, Methotrexate, and various forms of chemotherapy.  A filled prescription for Azathioprine takes up residence in my medicine cabinet intact.  Toxic poisons to make me well – oh the irony!  Do not get me wrong, I am grateful for being the “guinea pig” when it comes to how to stop an unseen monster creeping through the recesses of my body and brain.  I guess the evidence of Lupus Cerebritis can be seen.  The scarring in my brain is the evidence according to the radiologists that read the results of any MRI.

 I dance with the wolf…

From there to here is a story and this is the “Reader’s Digest Condensed” version of this life.  I have not written in this blog for a few months, mainly because I came to another turning point in Lisa’s life with Lupus.  Suffice it to say that the first six months of this year only showed me that I would need to find a greater understanding of what wellness means.  More importantly I was shown that the willingness to live and embrace life requires sacrifice.  I guess that I somehow felt I might have some input in the form that sacrifice might take.  Silly me!  Learning to dance is a process, and first one must learn how to walk.  Learning to walk means an individual must learn to stand, and the only way that I could balance was to realize the wealth of family and friend there to lean on when I need them. 

I run with the wolf…

I was diagnosed with Systemic Lupus or SLE in 1983.  I was told many people live a fairly productive life after diagnosis.  Some spend their life on a couch.  Since that discussion with my firs rheumatologist I have buried my father, finished a degree and gradate with honors, divorced after fifteen years,  started my  own  business, watch my baby grow into a terrific young woman,  swam with sharks off the Great Barrier Reef, been published in the National Gallery of Writing, and work with some amazingly talented people.  I am pretty sure you get the picture. 

Not bad for someone who was told by doctors in 1995 that I would likely be dead within ten years after my diagnosis of Lupus with brain and central nervous system involvement?

I outran the wolf...

Happy to prove those medical professionals wrong this time.

www.Lupus.org 

What is Lupus?

General features of Lupus

It should be made clear that although Lupus is a complicated illness, capable of affecting almost every part of the body, the majority of patients suffer from only a small number of the long list of features described.

Few have heard of lupus, yet worldwide it is more common than leukaemia, muscular dystrophy and multiple sclerosis. Some 30,000 people have the disease in the UK, of whom 90% are women. However, men and young children can also have lupus.

Lupus is a condition whereby the body's defence mechanism goes into overdrive and starts to attack itself. The symptoms are many and varied and the illness seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the GP or consultant is alert to lupus.

The name "lupus" comes from the Latin meaning wolf and refers to the erythematous red ulcerations on the face. Systemic Lupus Erythematosus (SLE) did not acquire its name until the middle of the 19th century. Lupus is a chronic autoimmune disease, characterised by exacerbations and remissions. Although there is no cure, this does not mean it cannot be controlled. Sometimes, patients find in their forties and fifties that their symptoms settle and they can come off all therapy. Although people of any age can suffer from lupus, women outnumber men by nine to one. It is a disease of young women, the peak age being 15 to 40 years.

LUPUS IS NOT CONTAGIOUS

. . . but can be triggered:

• at puberty
• after childbirth
• through sunlight
• during the menopause
• after viral infection
• as a result of trauma
• after a prolonged course of medication

Features

The most common features are:

• skin rashes
• joint pains
• profound fatigue

Other features include:

• heart and lungs
• involvement of the central nervous system
• anaemia
• hair loss
• kidney disease
• mouth and nasal ulcers
• eye problems
• gastrointestinal disorders
• vasculitis

It is important that patients should only read literature about Lupus that is not more than five years old. This is because, until recently, Lupus was widely regarded by doctors as a dreaded disease, progressing to kidney disease and usually fatal.  

My Immaculate Conception

I sat there staring at my doctor.  This new rheumatologit just keeps telling me I am going to die.  Everyone is going to die.  Too bad she looks like one of my former Brownie scouts all grown up.  This Girl Scout turned young college student is a hoot, so I just keep nodding my head as this "doom and gloom from womb to tomb" fear monger with a white coat keeps repeating herself.

"You need to be taking Imuran!  You need to be on Plaquenil! You are going to die!"

I just keep smiling a tiny grin and nodding.  Three weeks before I had gotten my lab results from the hospital that showed my liver to be in a pre-hepatic state.  

For months I had been walking around with an abdomen that looked like I was carrying a five month old baby.  Problem was I had a hysterectomy in 1997. No unborn child in there other than whatever dysfunction my friend Systemic Lupus had created without my knowledge.    Since the fall of 2011 me and the land of funny jammies had become quite close with a visit every five weeks or so.  Thankfully those lab results in June had helped me give birth to a new idea, one radical and scary.  How can I help my body heal??

The new ideas baby was born!  Willing to push out any concept or perception that kept me ill, I went to friends who had helped heal themselves of issues relating to fibromyalgia and liver dysfunction.  Asking questions, I began a liver detoxification process that has included juicing and living a vegetarian lifestyle.  Giving up sugar is a bitch but would you if it gave a life free from disease?  

The short of this experiment on healing and wellness has placed me in a unique position.  Years ago I had given my spot on the waiting list to see Dr. Andrew Weil to someone much more sick than I.  The one thing that I was able to convince my rheumatologist of was to order a repeat of the tests that came back so hellishly out of whack.  I went in and had those drawn yesterday. This hard stick would send lab techs on break.  

Reporting in that after one attempt a solid vein was hit that did not collapse which is a miracle in itself.  The second miracle was that four vials of blood were drawn and filled to the top in five minutes.  No this is not a vampire show.  It is the fact that a patient can say no to the doctor whose treatment may give them symptoms through medications prescribed that may create a different kind of living death.  

More on my immaculate conception . . . .

University of Arizona Center for Integrative Medicine

The Merry-Go-Round.

Have you been away?  It seems that I have pondered that question over the past few months.  The joy of writing a blog and living with a chronic illness is that sometimes the dis-ease takes over.  In this moment I sit here wondering how I got to this place again.

Guess I better clue you in to the next part of the journey.

Five years ago I gave up being sick.  The vegetarian boyfriend helped as I became someone who ate VERY well for the state of wellness to take hold.  Stress elimination is my favorite stress management.  Fast forward to this past nine months.  Finding myself in the hospital over and over again, nearly every two months or so, I thought maybe it was time to go back to the specialists.  Living three hours from where the practitioners practice, I willingly walk back into the cycle of driving, doctors, tests, and the merry-go-round began.  This last week included a visit with a rheumatologist to see what she could find out about how to get off of the merry-go-round.  I have been a passenger on this ride before.

New patient visits are always fun when a person like me has been living with a disease like Lupus since 1993.  The questions, the history, and more importantly what I am willing to do as a patient to play in the land of western medicine.  My experience has shown me that tests don't often tell the tale, but I have not had the full battery of tests checking my disease in years.  I left Dr. Crowley's office on Monday with twenty different lab tests. Can I hear an "oh my gosh!"

At the lab this morning I was told that there would need to be seven vials of blood drawn to cover what the doc had ordered.  Oh but let me back up.  The doctor's office had called this morning after reviewing records from my last stay in funny jammies right before the benefit for the United Food Bank a few weeks back.

"Doctor Crowley wants to put you on Imuran immediately."

Imuran is a pretty toxic friend for those with inflammatory or immune system malfunctions.  I took it years ago, a chemotherapy whose first side effects are malignancy.  To really understand what I am talking about follow the link  IMURAN (asathioprine) where the fun really starts.  My father died from lymphoma.  My mother is a breast cancer survivor.  I really try to avoid any drug whose first "side effect" is malignancy or cancer.

My rule in the land of practitioners of medicine is a bit like Missouri - show me.  I went to the lab, found out exactly how much blood they were needing, got stuck three times and sent away unsuccessful in providing the materials needed for tests on my anticardiophospholipids and neat stuff like that,  Tomorrow is another day I say.

In the meantime I write,  If the blood doesn't justify the toxicity of the cure, no is a complete sentence.  I am well right now, in this moment.  I hate being scared but in reality none of that changes the reality of my dis-ease.  I have missed you all, the ramblings of my soul.

One thing I know about the merry-go-round is that I can get off the ride any time I want.  I can and do have the right to say no to treatments that can cause severe harm along with the good.  I guess it is today that I will go see the vampires.

In the meantime I promise not to stay away so long or don't let the illness get you down.  I will let you know what happens next - to chemo or not to chemo, that is the question. . . .

Now

Here I am again.  Now.  A moment in a life that seems to blur from one steroid sweat induced coma o pain killers and fear.  Contrast shows nothing.  Medicine knows nothing.  Only in the hope for another day break do I try again.

This is a blog written by a woman living with Lupus Cerebritis.  Only in the hope for tomorrow do I find the strength to go on today.

The Imposter

1998


Lupus is a wicked parasite that robs the host of energy, time, and if not careful dreams.  At the moment I had none of those previously mentioned attributes, just that impostor Moon Face that kept taking over my life.  I would hear me and see her when I looked into the mirror, a hellish caricature .


 Crazy how she doesn't seem to notice . . . .


My daughter still smiled at me the same, but was it me that saw the fear in here eyes?  Was it my fear reflecting back on her innocence?  It doesn't matter.  What matters is that I am here for her now.


2012


I have no idea how many of those "first days of school" were missed along the way to this moment.  As I watch her prepare to move off to university it saddens me to know that part of her dreams will always include memories of when I was not there while she grew up.  Now I look in the mirror seeing a version of me who is not a reflection of the Moon Face.  I also see a woman who is longing for those days in 1990 before I started feeling like a narcoleptic crazy person falling asleep in the middle of the afternoon.


1991


I loved being pregnant.  Somehow womanhood brought to me a sense of well being.  Glowing I wander about my day expectant to meet the life that was becoming.


I need to remember to tell the obstetrician about the narcolepsy thing. . . .


I still feel her kick me, those wiggles forever imprinted upon my soul.


2012


Lupus has robbed many of us who suffer (not excluding family here) of moments.  The missed chances to be present at the send off to the first day of school.  The chance to go on those family events or vacations robbing memories from the book of life.  Chemotherapy robbed me of the thick luxurious hair that hung down my back as a child.  Moon Face Lady has not been around lately.  As the next phase of life as a mother begins I reflect back to all of the times that my  child of Lupus is a parent to the parent afflicted.    I was blessed to complete a degree at Northern Arizona University last year and see the pride in my daughter's face after the ceremony.  Now as I look forward to the last day of her junior college career and the first days of her university career I realize a few things.


I may have missed holding her hand on the way to the bus, but I have not missed being a part of the school of life.  


Damage from the scarring footprints Lupus has left on my brain present some challenges.  I do not look disabled on the outside, and I am pretty good at hiding it to the outside world when I feel it happening. The experience of a disease like Lupus has left me ready to walk into the next chapter of my life as my daughter walks on to the next chapter in hers.


 The only way I will miss any part of life is if I fall asleep again while I am typing  the next sentence and never wake. . . . damn you impostor!  


Guess I am still here . . . 



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