I am a 50 year old married mother of four incredible children. I am an author, patient advocate, pet owner and friend. And sadly, I am disabled from the cruel autoimmune disease Lupus. Facing a future with no more treatment possibilities, this blog is dedicated to that journey.
Yesterday was an event. I woke up miserable after a very restless night. Headache skyrocketed. Sedated that only worked for 3 hours. First threshold. Let’s try new med. Injected and within 30 seconds my heart seized. Not the seize of a set of lips on your throat seize but a life threatening one. Heart rate dropped to 60. My normal is 80. Respirations 8. My normal is 12-20. Bliod pressure 201/107. Not a typo. My head quelled. My heart felt like it was dying. Treatment oxygen, can’t have morphine, can’t have nitrates. Lower BP.was all I heard. Rapid response called. Unable to speak or move. Soaked with sweat. Threshold met.
Today with my oxygen, I watched the sunrise from my perch in my ivory tower. The blessings and peace for another day. The reminder to appreciate life. No threshold met. .
Hospitals are not immune to pathetic. I am so blessed to have a loving family and good friends. Bravery is relative but despite all my temptation to drop the wall it remains stoically bolstered against the tide from hell. For helpless is not permitted. But?
I am writing a second novel and exploring dominant and submissive roles. It is very applicable to hospitals and emotional walls. Honestly i would love to be submissive to some degree as a patient. Have a dom make decisions to insure my health and safety with my pleasure as their overwhelming motivation. To lie back and let the walls fall. To be able to unburden the fears unencumbered by my need to people please. My need to care. The idea is appealing to have sweet hands holding my face in place telling me “I’ve got you.”
Instead i continue to take care of. My role as the domme. My roomate in the early throughs of dementia aware shes losing her mind with no family and friends who are more afraid of her. And a nursing staff who have no clue how to focus her to relax at 330 am so I can get sleep. So my domme did it.
Case in point a friend reaching out on behalf of a friend who has more psych pathology than anyone should be burdened with in a major crisis. So my domme did it.
Case in point a family member who needs more reassurance than the person in the hospital bed. So my domme did it.
I am tired and spiraling down the rabbit hole. My incredible hospitalist embraces my inner submissive by asking “is there anything more i can do for you?” That’s for my inner sub.
I am perched in my ivory tower overlooking downtown Mineola from my cozy hospital bed. Yes my body failed to absorb the clues and infection has dropped me flat on my back. But the infection takes no prisoners. It evokes a systemic response causing my frenemy Lupus to pevert itself. This time my joints and brain are exploding with a burning agony and a pressure that a chainsaw and a drill come to mind as a cure. Primitive but effective. I write this at a lucid moment as the most effective treatment for the brain pain is to sedate me from the world. Now I sit in an early stage of a dilaudid hug. The sedation has worn off and it returns. The doctors are again
concerned
but happy as i am looking better as who would not when the sadists grip of pain is broken albeit for a brief time. I feel wrecked as I feel torn between the bravery wall I maintain to keep the light in my family’s eyes and the utter exhaustion of the battle. But that evaluation is for another day. I feel the tug of sleep from the drug happily injected into my belly.
The sound of the barking dog brought me to consciousness. The morning was spent watching my youngest’s football game in the company of my oldest daughter, son and husband. The alarm that morning made me jump. The very first breath unsteady and painful. My nostrils flared at the exertion. I sat up and reached for my inhaler. I sucked in barely able to get the two pulses in. “You must move.” I willed myself.
The walk to the field hurt. The oxycodone was hitting nothing. I held my husbands arm hoping for his strength. I was light headed. I smiled at my fellow parents as I took the stand. The fake smile I was used to giving. I was exhausted. I closed my eyes and made a silent plea. I calmly reached for my mental respite. The sun beat down despite it being early morning and a late September day. There was no escape. We baked. I was cold despite the heat but the ultra violet light was so toxic. I will not give in. I prayed my long sleeves would protect me along with the sunscreen. The game was so terrific and the shy look from my sun on the sidelines made it so worth it. A memory for my sweet angel. The best.
The walk up the path to my front door was unbearable. I felt myself weaken every step. I carried on the silent conversation with myself wishing each step. A made it to the couch and immediately fell into a deep sleep. Flustered six hours later I was conscious. Pain seared me and again I repeated the same routine I have repeated over and over. The inhaler and the pain pill. Just carry me through a dinner with my husband and oldest. Again the best.
I have been sharper and more vital. A thought of maybe things are better. An emotion getting out of my head. I feel the tick of the clock loudly again. My body feels like it is again messing with me. I hope it is different but I flinch. I am no longer interested in the worst. I force my body, like a challenge to hope for the best.
The sun shines in the glorious state of summer moving to fall. The brightness stings my eyes. My head resonates with pain from every sound and flash of light. My face reflects a perfect red butterfly. My body aches. And I gasp for a gulp of crisp delicious air. My hand reaches for the red inhaler. Apropos red, emergency, life. I suck in a puff. My lungs are not open enough to take in enough. I close my eyes and concentrate hard to get in that second puff. I wait.
Today I am fragile. I feel uneasy. I feel exhausted. Air. That sweet breaths that support life. The wafts that make leaves skip in the sky. Support birds and airplanes. Invisible yet so unbelievably necessary. Air that cannot get into my lungs. I feel the quiver in my chest. Air beginning to move through the arid desert that is my lungs.
I live the odyssey. My blood work looked pristine. The doctor says I am working hard. A first in five years. But, there is always a but. The damage is ongoing. The moderate airway damage to my airways is there. The weight that sits on my chest. The pounding in my head. The warning beacons. The constant reminders that life is so important. That the air we expel should be chosen wisely.
I laugh at the weeks reminders and it is only Thursday. The man wasting his air about the possible misdeeds of another. The priest warbling about a life in paradise. I’m sure her parents want her here and could care less about paradise. Politicians preaching about their fixes to a country hopelessly divided and gone astray. Animals in foreign lands preaching deadly philosophies. Animals on home turf equally disturbing. All using and wasting precious air.
I shut the intrusive thoughts away. I close my eyes. I try to breathe that beautiful, crisp, life sustaining air. Air sweet air.
The sun has gone down hours before. The house is quiet and still. Darkness has enfold our home. An expression appears in the eyes of my love. A softness, one of need and heartbreak. A child of a friend has passed from that dreaded disease: Cancer. She was beautiful and brave. And the fears come roaring out. In 2006, On a sunshine filled day we entered the world of fear that word brings. Our sweet boy was stricken with the deadly disease, A particularly vicious form. And he lives today, handsome and healthy. His first football game on a similar cool sunshiny day. He is strong. He wears his big brother’s uniform in homage to the love they share as only brothers do. In the morning they will walk together with their father to celebrate the life of another beautiful young man who succumbed to the disease of drug addiction. His death rocked their souls. Their anguish still palpable.
We sit together, I take his hand and press my lips to his palm and the tears fall. Emotions long subdued break free. Free after a week of nightmares and sleep walking. A desperate hug in the night like I am a life raft. I say nothing. I listen. Fear, wretched horrible fear in a whisper. I cry, my tears hidden in the darkness. I rub his back. A gentle touch and wait. Wait for words long suspected but never spoken and they come unbidden. He sleeps finally, peacefully. I say a silent prayer. Sleep finally comes for me. Peace.
When we were children, we used to think that when we were grown-up we would no longer be vulnerable. But to grow up is to accept vulnerability… To be alive is to be vulnerable. Madeleine L’Engle
Two sides to me. In April I was confronted with facts that tore a hole into my soul. I was told in very unambiguous terms that my body was failing. Death came to my dinner table. In fact it came to my breakfast, lunch and every table in between. Confronted with this reality, I faced real hard choices. I would now have to put it in perspective. To think what it meant to me. I needed to make decisions: What was a hard line, what was a soft line and what would I no longer give any thought to. Railing against the machine though easy to wield like a knight’s shield was an energy consuming task. A task that it was clear, I have no strength to perform.
I needed to relate to my distress like a medieval damsel. To live my life I needed to meet my vulnerability head on. Who am I? I have spent my life practicing what I am good at. Wielding a shield, Pointing a sword, Pushing to the top. Anger was easy to access. Emotion was suppressed. Pain was acceptable and a necessary evil.
I am used to pain. Both my parents are gone, I have faced illness in my family, I survived a sexual assault, I lived 9-11 up close and personal. My hazel eyes have seen more pain and evil. Now my body is wracked with pain. Physical, miserable, unrelenting pain. My head pounds, my vision blurs, my lungs are seared, my bones burn, my muscles are weak. There are pills for that. I suck that up, some days better than others. I do not fear that pain.
The other pain, the pain no one can quantify. The pain that is invisible. The pain that fills the well deep within. The pain of abandonment, hate, loss, loneliness, betrayal, inadequacy, unworthiness and fear. Those no pill can fix. This is what eats at me. My soul has a full appetite for this. This is no way to live well while dying. This is like a sealed envelope never to be opened. So like the song from A Chorus Line….I reached deep down to the bottom of my soul and cried. A gentle caring physician who realized there was no cure for my body, but in my utter desolation, pointed out there was a cure for my aching soul.
The dichotomy of my life. The choice was to live a life worth living. When you are ill, your life is surrounded by the aura of the disease. It forms a ring around you. This is now a hard line. My life is not a disease nor a sum total of my symptoms. I consciously choose to lower the force field in pursuit of finding life’s joy. Vulnerable. Painful. Open.
I choose to seek. I choose to open the window and let the breeze in and let out the acrid stifling air. I choose to hurt to feel. How do I know what will help? I know that to feel joy you need to feel.. My mind needs clarity. I am so exhausted. I desperately want things to be different. Make the choices I can. Again another hard line.
Seek and you shall find. I am in pursuit. The walls are coming down, I am seeing the sun for the first time in a long time. I bare my soul. I shed the shell covering my body into the hands of a gifted therapist. I dig deep to places long frozen and as the chasm releases so do I. This is the two sides of my life. My body remains on the trajectory away from life. but I smile again and my soul though raw is beginning to be soothed. Two sides. Abundance.
I include a new link about how campus sexual assaults came to command new attention. The article is well written and takes an important view point. I shake my head. 30 years ago, as a college student my senior thesis was about college sexual assault. I wrote it as an intern for the President’s office. In addition to writing this thesis I served on the President’s task force on Women’s safety. I provided a voice for my fellow campus members. Why this particular subject? 30 years ago I was raped by one of my fellow students.
C was the man about campus. Smart, funny, handsome, C was in two of my classes. Prior to my living off campus, he lived around the hall from me. I found him non-threatening. I certainly never thought of him as a rapist. My soon to be rapist. The late night he showed up a my apartment, I was all ready in my PJ’s studying. Music was playing, my roommate’s bird chirped incessantly. She took an extra shift at work. The extra shift of mine so I could study. A flight up from the basement entrance to my apartment I let him in. My radar never questioned his arrival. I knew him, he had a girlfriend. I offered him a drink and excused myself to change into clothes. The door to my room opened and my life changed forever. When he was complete, he kissed my forehead and wished me luck on my exams. I was numb.
What happened over the course of the next few hours was the next crime. I called my girl friend and managed to get the words out. She picked me up and literally dragged me to the hospital where we both worked. She called a head and a resident I knew met us in the ER. The gyn room was a small windowless cubby next to the nurses station across from the trauma room. The exam was physically benign and emotionally exhausting. The Rape kit was not standard. The doc called the campus police. The officer that responded was also a friend. Emotionally supportive but his job was to call the county police because the crime was committed off campus. Then the crime. Two male officers responded. One more gruff and cold than the other. There was no such thing as a Special Victim’s Unit. After 3 hours, I decided with some very heavy coaxing that id not in my best interest to file charges. “You let him in. You offered him a drink. You knew him. Your bruises aren’t too bad.” flowed through my consciousness. And it was done. No muss, no fuss for the police. Me on the other hand, that’s a life time. I cannot hear the song when doves cry and when I hear cockatoo’s chirp, I flash back.
Flask forward years and I am a staunch supporter of victim’s rights. I have taught thousands of students in the EMS world about treatment of sexual assault victims. I proudly worked as a victim’s advocate before I was compelled to retire. Procedure wise things have changed drastically. I have had the pleasure of working with dedicated specially trained nurses, and police officers. Sadly not much else.
Today college campuses have not changed much. Freshman year between September and December is the most risky time on campus. It is in the best interest for the administration to not have crime on campus. In my day, as part of the task force, thanks to a brave female campus safety officer and a little stupidity, I was able to secure secret statistics showing the down grading of crime. Now with social media, instagram and alcohol it is very easy to turn a victim into morning after remorse. It is also sadly a compulsion of some women to make up tall tales. That is its own story.
In their inimitable fashion, laws are being drafted mandating among things numbers keeping, freshman are being given a mandatory crash course on the subject of sexual assault. Politicians are claiming sexual assault on campus is coming into the light. I do not know.
Lessons I have learned…Say no loud and clear continuously. Know your body. Report it and tell the truth. You are your best advocate. There are a lot of different motives involved. Tell someone immediately. This person is your outcry witness. Most victims have their best lucid minutes telling this person. Do not be ashamed. This is NOT your fault. You are not alone. People do care.
I pray as the mother of two daughters and two sons that sexual assault never raises its ugly head. But I am not convinced.
The humidity and heat creates an unbearable duplicity in my body. Fatigue and air hunger add to the myriad of ever present symptoms my mind and body function with daily.
A car ride filled with the frenzy of souls on the road as the panic of the back to school season begins ends in a doctor’s office filled with people who as I listen to the cacophony of whining fills the air. A secretary who whines about the same bad day she has every time I visit the office. A couple who refuses to fill out the paperwork including where they live because they are tired of filling out paperwork. ( i have 17 physicians..do not whine to me about paperwork). A woman and her girlfriend have a conversation about their friend’s prostate at a decibel level that would defy the Blue Angels. An older couple bicker about where to go out to dinner and the fact that Katie Couric looks terrible in that scarf. This discussion was mildly amusing as their love shone through. And the whining continued among the room filled to the gills from every corner. I keep my head buried in my book writing trying to remain disengaged as my daughter hates when I chat. It is hard to explain to her that this keeps my terrifying fear from taking hold. I choose not to whine.
It is my turn to be seen. I am used to the format of discussion exam discussion. My doctor is warm and caring. The discussion well for lack of better terms sucks. I choose not to whine. Tears do sparkle in my eyes The ct scan that showed my miserable kidney stone also showed the utter destruction my disease and its treatment are wreaking on my blood vessels in my abdomen and pelvis. “Your brain has smaller vessels..large clog in smaller vessel.” You get the picture. Thankfully my doctors agree that i deserve to be comfortable. We discuss this as we remove a med that helped my headaches but is contraindicated in kidney stones. Kidneys win this one. Cannot piss them off more. They are spilling protein. I promise to let him know if the right side of my head continues to feel like bombs exploding. We discuss the electrolyte issues secondary to my diarrhea. After tons of tests, probably caused by the cellcept. The drug that is keeping the tenuous thread of my disease and my life balanced. When I cannot stay hydrated and chemically balanced the drug will be stopped. The lupus will win. I discuss my new therapist..it explains my glow. Thank you Don for that peace.
I diligently report to the exam room. My BP rings in at 120/58. The one good thing going on. My neuro exam remains the same…all showing abnormality. A left lacunar infarct and a right frontal lobe infarct plus atrophy in the pons and brainstem will do that. He knows it sucks. I know it sucks. He helps me off the table as we discuss Marc Chagall artwork. That is much more fun than talking about brain decay.
We return to discuss. Renew pain meds. Discontinue other med. Return in two months. A hug and a kiss and I return to the waiting room filled with whining.
I drive with my daughter to the nail salon for a treat. And the same scene plays out again. Whine..the waxing hurt..school starting..the dentist..my toe fungus..my boyfriend.. Blah blah. I smile and breathe. (Don would be happy). Shut out the whine. I am happy for my gifts. I think as I look at my reflection, I do look good. Lol. I wonder why people do not learn to appreciate things and hear themselves. Wine is better than whine.
This is a tough week my lupus is like an angry witch turning flesh into stone. My body is stiff and sore. My head aches and with each turn the room spins. My joints burn with an insatiable pain and form stiff barriers to motion. My ribs are stiff and inflexible preventing the movement of air. My vision blurry and my face a picture of the red butterfly. Lupus, the wolf is howling at the moon. Despite all this I am peaceful. A peace that comes from deep within and not courtesy of a pill.
Yesterday was my day for me. A therapy session with an incredible man. A dinner with an incredible friend. My soul salved by both. Western medicine has reached a set of limitations. My body ill and frankly I feel just keeping from sinking. My mind active and pleading. Calling constant orders like a marine drill sergeant. I am a victim of my own thoughts. I have entered into a therapeutic relationship that combines dynamic interactive therapy, breath and relaxation techniques, and tactile stimulation. That description defies reality. To me it is like the opening of a flower, unfurling a flag, unwrapping Christmas presents. It is pure peaceful splendid joy. My mind and body is being taught to surrender. Surrender the angry voices, surrender the pain, surrender. In this case it is not giving up. It is surrendering to a war not winnable and raising a gauntlet to find a battle I can win. It is like standing at a door, banging on it to get the attention of someone behind it, my knuckles bloody from the immovable attempt. And then lifting my eyes to see a door wide open beside it and walking through. It is learning asking for what I want and accepting that not only can I attain it but that I deserve it and I am not selfish for asking. Tears fall like rain because I am safe, secure and allowed. This is an amazing gift, being in a space free to be…no worries on what I say or how it sounds. Free to experience because it is a place for me in the presence of someone present for only me. Eyes focused on me, the sound of my name like a beautiful clarinet. Peace and warmth. Sanctuary. Bliss. It is unique to feel honored and special…A princess as she is someone who receives all the spoils of love and adoration without having to constantly be the one in command. I relinquish command. No more sacrifice, no more paying the price. No more feeling as cold as ice to make it through the day. No more detachment from the body that is so trying to fail. My body’s failure is not my failure. The walls are breaking down. I am walking through a new door. God only knows why it has taken myself so long to figure out to take this trip to Bountiful. To this incredible therapist who allows me to be and makes me glow from it all. Bless you.
And to my glorious friend the Red Hare where conversation can go from apple pie to sex toys. I close my eyes and laugh. I can feel it . Open to her presents of presence. Love and friendship shared through time and adversity and amusement. I can smile abandoned as well as cry tears of sadness and joy. Safe to share this trip to bountiful unafraid or embarrassed. To her bless you.
I am learning to be unafraid to walk that mile until there is no more road. And thanks to this love and support I expect it to be a very long trip.
Robin's Journey 