Started June, 2013 ~ interrupted and resumed August 2013, interrupted and finished September 2013~ and so goes our lives.

JUNE

Nothing like a hospital stay to start writing again. Hours of captive attendance. Quiet required. Stationery. The beeps and clicks of monitors and pumps… The long sought sound of restful breathing finally added to the chorus. Dannie appears to be finally sleeping- head dropped, ice packs surrounding her neck and jaw, head phones, eye mask… and her brow un-furrowed for the first time in days.

The wisdom tooth extraction went very smoothly on May 31, 2013. Like many people with long term undiagnosed chronic disabling illness, people who have suffered from daily internal assaults, and a medical world that initially one thinks can help, then sometimes harms and often just doesn’t know what to do, and the lost after loss of elements of what makes life worth living… Dannie is now suffering from PTSD related to the pain of her illness, the unavoidable and compounding loss, and the medical treatment and intervention. Once with steel nerves, she could face just about anything with eyes open, grounded resolve that she could win over any potential intrusion and interference to her day… while that spirit is still here, her tank has been emptied too many times. Too many things gone wrong… too many promising trials that became the source of more pain, or the pain of nothing yielded.

So her wisdom teeth – generally a teen/early twenties no big deal thing — were seen to be sitting on the nerves, and whose extraction presented her with the anticipated loss of feeling in her lip and cheek (eating, smiling, kissing with no feeling).  She did not waver in her decision to get this over with despite the potential outcome. She heeded encouragement and direction from one of her treatment providers that this would be an important step in her healing, despite her fear. He wanted her to complete this surgery, before resuming other treatment. She pushed through four painful and trauma triggering appointments, and faced checking into the hospital, general anesthesia, and surgery… dealing with dozens of new providers; three hospital teams: pain, surgery, medicine; countless nurses and all the relationship challenges–the negotiating, the advocating, the communicating, over stimulating and exasperating environment. Lights, hospital food, noise, disruptions, poking, squeezing, intrusion, exposure… it is simply exhausting upon exhausting for a Lyme patient whose sensory perception is heightened aggravated and hurts, when touch sends painful sensations reverberating, when day is night and  night is day, or there is no night (sleep) at all. Struggling to smile to establish positive relationships with doctors, nurses, assistants, lab techs….when every cell in her body is saying, “QUIET!!! No noise, no touch, no light…”

She now is resting post surgery, with no loss of feeling in her cheek or lip. Thanks and rejoicing!

That said, a pain crisis throughout her entire body was triggered, landing her in the ICU where we now reside. Too many days like this for anyone, yet one so young. More time in hospitals than any other place than home. More contact with doctors, technicians, phlebotomists, nurses, physical therapists and on and on… than peers. Peers are an endangered species in her life. Where are the healthy friends that long ago claimed their loyalty and love?  They are rightfully living the life of the early 20’s …. Adventures, exploration, figuring it out.

I can’t go there right now. Neither can she or Ari.

So here we are. Knowing this all too well, yet not knowing what this specific chapter will present.

Four days later: They wanted to move Dannie to another floor, out of ICU, to take her off IV medications and switch her to oral pain meds for a few days. She insisted on going home. She told them she knew the drill and that being in the hospital was not healthy for her… that she could face the transition at home better than in the hospital environment. Despite their unfamiliarity with this kind of discharge, she had an amazing nurse practitioner that HEARD HER and we left directly from the ICU to home… several prescriptions in hand… and praying for a cessation of pain that was not accomplished in the hospital.

So brave. None of this is okay. Yet the 13 years of medical trauma, combined with the internal beating her body gives her daily has become too too much. TOO much. I see the toll it is taking. For the last year, I see her changing. I see it. I see it. Shift focus…. I see her persistence, her resilience, her fierce grasp to taking hold of her life, over and over again. Grabbing it back from pain, wrestling it from nausea, finding her voice and claiming it with

The days that elapsed in the weeks to follow were filled with Dannie diligently getting off the pain medication and recuperating slowly. Thankful for the successful surgery, yet very saddened and concerned about the trauma it caused in her body and spirit. She is not bouncing back. She got rid of 5 of the six pain medications. Said NO to them. Her hope is waning, her sadness, frustration mounting. Fighting and relinquishing at the same time. She can’t talk about it anymore. Shut down. White knuckling it.

The plan is for her to get better enough to head back to Witchita for more treatment, which was so amazingly effective, so quickly, making more progress than in years… making her body a better environment for the continued development of the stem cells. She wants to get back there… continue to progress… Lyme rebels after any trauma to the body… surgery qualifies.

We planned her trip for June 23^rd to travel, and resume treatment June 25^th.  This was to be enough healing time.

Reservations made, caregiver hired…

But her body is not cooperating. She keeps trying to get up each day to pack, to get ready. Each effort thwarted. She insists that no one pack for her… she wants to do it herself. Each night she makes a list for the next day. Each day the list is carried over. I see both her disappointment and fear, right alongside her stubborn persistence.

The 23^rd comes, trial upon trial to get up. If she can’t get up, how can she fly? And change planes, and travel to the hotel, and get settled, and start the five day a week routine of treatment 4-6 hours a day? The noise, the light, the movement, the pain of the stimulation on every level. Pain at an 8 baseline.

Flight changed to the 24^th.  Then the 30^th. She packed over those days. On the 27^th we moved her to a hotel next to the airport. One step closer for rest and launching. Her bedroom at home where she laid for 11 years feels like a jail cell… we brainstormed how to increase the likelihood that she would make the flight on the 30^th and this seemed a good plan… no triggers, just quiet. She was able to be up a bit, and out of bed.

And, at 4:05 p.m. June 30^th, she was off!