Tiny Salutations

Tiny Salutations

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Wednesday, March 25, 2015

Another brush with death



I know it has been a while, but I just didn't have the energy, or maybe the will, to write.  

It was sudden.  I went to the park for a five minute walk, and I suddenly couldn't walk.  This was not a normal couldn't walk, no pain, but like my brain and legs simply couldn't communicate anymore.  They collapsed under me, and my husband had to half carry me back to the truck and lift me in, all while corralling our almost-three year old who was busy rambling all over the paths.  I went home and took a nap.  Now this may seem silly to some, that I took a nap instead of seeing a doctor, but when you are constantly living a life that is not "normal" it is hard to tell when it is necessary to see a doctor and when it is something you just have to live with.  And I have five autoimmune diseases.  So many things can go wrong and be "normal".  I had been having a hard time breathing for about a week.  It gets better and worse.  I had been getting excruciating headaches from low oxygen. These are headaches that no pain medication can touch.  Headaches that persist and cause me to throw up from the pain.  When I woke up from the nap, things were no better.  I could not stand on my own.  So I went to the hospital.  I was brought back from triage quickly, before others that had been waiting.  The nurses began with vitals and blood work right away.  The doctor came in quite quickly.  I must say this doctor was a wonderful doctor, but it is not a good sign when the doctor comes in right away.  By this time I could not even lift my head, was having a hard time breathing, and had no control over much of my body.  The nurse had to lift me and carry me just to use the commode for a urine sample.  The alarms on the monitors went off constantly- the entire time I was there from start to finish.  The doctor sat down and gently told me he was admitting me and sending me via ambulance to the university hospital.  But first, he wanted to get as much information as possible to send me with.  Immediately a team of technicians came in to get tests done- an x-ray, an EKG, more blood work, etc.  They all placed my tests in bright red bags that said STAT on them.  After a bit of time- time works differently in the hospital, there is no clear change in days, and there is never really nighttime, it is hard to tell how much time has passed- the doctor came back and said that although I appeared to have a flare of my myasthenia gravis (a neuromuscular autoimmune disease I have) I also had very low phosphorus.  His best guess on why was that lupus was causing my kidneys to dump it.  Phosphorus plays a critical role in muscle function.  In the range of phosphorus I was in, people get paralysis, their hearts stop, go into comas, they die.  It was already effecting my heart and lungs and obviously causing paralysis.  This really was an emergency, I was in a serious condition, and once again I was close enough to look death in the face.  I would say though, that when you are in a critical condition, you are in another world.  A world where you don't care and you want to sleep.  A world where you hear, but you can't respond well and even breathing is annoying and seems a difficult task.  I was put on a drip IV of phosphorus for 5 hours.  When I was done, I could stand with support, and I could lift my head.  Doctors have a very sneaky way of keeping calm in an emergency.  They speak as if they are chatting over coffee to you.  Then, afterwards, the reveal how worried they were, how dangerous the situation was.  The exception being when I was being wheeled back to my emergency C-section as my doctor was gripping my hand and telling me (it seemed she was yelling from far away, down the hall, but she was inches from me) to hold on and it was not my time to die- I could tell through the haze of my critical state that it was too much to stay calm.

So now, I am in a wheelchair.  I have gotten strong enough to stand on my own and walk a few paces, but I cannot really walk.  I can't walk in the store or in the park.  I cannot go on walks in the woods or on the beach- this is what made me.  I felt whole in the woods, on the beach, in the mountains, by the river.  Now I have lost a great piece of myself.  I may not get out of my wheelchair.  I may never be able to feel that peace again, to loose yourself in the woods.  I have not been able to do things on my own and when I have tried, many times I have ended up falling and unable to get up.  I continue to have difficulty breathing and headaches.

No one knows why I am losing phosphorus.  Not one doctor that I have met so far has ever had a patient that looses phosphorus.  It is extremely rare.  So far I have gotten shrugs and pass offs.

This raises emotions.  My husband has brought up conversations about the future and what to do if he must raise our son alone.  My dad has brought up the familiar emotions about not wanting to see your child suffer.  And I want to hear it.  It is certainly not that I want people to be sad.  I just want to be there with them.  I often feel that  am alone in this place no one else feels.  A place where there is uncertainty and loss.  And no one is there with me.  It is not a burden to hear these thoughts and emotions from those I love, but fills that space, that lonely space, with comfort that we are there together.  We will all feel something, and it is much easier to bear if we know that we don't bear it alone.  That we are all in that place together. 

When I get stressed, overwhelmed, or emotional, I buy books.  So I have quite the toppling stack by my bedside.   




Layne has had his sleep study.  He did better than I thought.  He wasn't a fan of putting on the monitors, but once they were on he was okay.  He particularly didn't like the pulse oximeter on his toe and had a hard time falling asleep from being annoyed by it.  He ended up sleeping fairly well.  We won't have the results for over a month. 

He got a particularly special present on the way home- life sized Woody, Buzz, and Jessie.

We have decided to keep the micro house.  We put so much time and thought and soul into building it that we can't give it away.  It will be Layne's school house for now.  And maybe someday we can live in it.  I think we could work with the laws here to make something work, but it would be a lot of work, and I just don't have the heart and energy to go through that right now.  Raising a boy and loving my family is enough right now.