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.  

Friday, March 13, 2015

Difficulty and Beauty (and house laws)


I have been slowly working on a blog post of more substance, but for now this post will be a quick read and some nice pictures. I have not been feeling well and viral illness has run through our family, so I have not been able to post a blog recently. Our lives have been filled with the stark contrast of painful difficulty and promising beauty.

We are in a waiting spot with L's medical issues, and although he continues to quit breathing and aspirating, just knowing that we on track and there is an effort being made is enough to make the waiting space a comfortable one. We have a teeny bit more information about his aspirating. It is more dangerous than we were under the impression. Signs are starting to point toward a neurological disease. I hope we get answers, but I do hope it is not something serious. The therapist also noticed his breathing is more difficult after drinking.  We are not thickening his fluids, because the therapist believes he may just aspirate the thicker fluid, which would be much worse. So for now, there is not a whole lot to do and his sensory issues are working against us. We are supposed to try cold drinks and strongly flavored drinks for now. We need to figure out the root of the problem. 

Aside from that though, he is growing into the most beautiful little boy. My goodness is he bright. This kid, that couldn't talk this time last year, is able to convey all kinds of grand ideas, and you can see in his pale eyes that there ideas so much more grand being made in there just waiting to find the right words. He knows more about cars than I do and can name probably more than 50 models. The other day, he picked up a spare computer part (all of which look the same to me frankly) and told his Dad, “Here, a hard drive”, which it was. For his third birthday, he has requested a penguin party, in honor of March of the Penguins. He loves to read with us and, just like Mom, The Lorax is his favorite and is to be read every night, of which makes my heart glow with pride. When we go outside, he has to hug and kiss a significant portion of the tree population. He already seems to have a sort of inner knowledge about what is important in life, love and family, beauty and intellectual ideas, freedom and connectedness.

Unfortunately, amidst all of the growth and beauty that is our son and the early spring sunshine we have had, there have been some significant difficulties in our life too. It seems I have been resigned to using a cane. I have been in quite a bit of pain, which I have not been able to track down the beginning of. It is not clear whether it is connective tissue or nervous tissue or muscle tissue. Any of those could be true. The pain clinic seems to think it is a nerve issue and that my autoimmune diseases are attacking the nerves. No one else seems to have come to a conclusion, and although no one really agrees on one cause, there is concern that my central nervous system could be being attacked. Regardless, I'm not able to really walk. I can hobble with a cane for a short period of time, but anyone who knows me knows that not walking is a big blow. Just simple things like walking to the pharmacy (well, okay, it's like the Oregon Trail to get from the car to the Walmart pharmacy) or making dinner or changing the boy have become quite difficult. And forget about hiking, which is a big part of my life. This has been an eye opener for us. About a year ago, when I started chemotherapy, I made a bucket list. It was a things-I-want-to-make-an-effort-toward-and-be-semi-serious-about list. Well, okay, someday is great, but someday has come and gone for many of those things. Can I hike to the top of Desolation Peak to the fire lookout that Jack Kerouac stayed in? No, it's not likely I will ever be able to do that. What about my number one on the list? Mesa Verde cliff dwellings. Yeah, I can drive there, but at my current state that is the farthest I will get. I can stare at them from the parking lot, I guess. They are not all out of reach, but a great deal of them are. And some I hope to get back someday, like Mesa Verde. But I do not believe in dwelling in things you can't fix and spending your energy in things that you can. So where does that leave us? That leaves us in the fact that someday needs to be now. All of those wonderful things I want to do? Someday may not happen, so I need to do those things now. I want everyone to think about that today, because someday may not come for many of us, it just happened to me earlier than most. When you talk to God that first day in Heaven, will you be able to look at Him with a grin plastered across your face and say “I used my life well”? Will He say He was proud of how you spent your days? So admire the beauty given to you in each day, like the way the light looks just perfect as the puddle reflects those spring flowers just in bloom, don't miss those moments, please. But in addition to those beautiful moments where and when you are, make more than just a vague effort to make the grand ideas you have come true. Don't just travel through life floating through the days passively, make your days purposeful, even if that purpose is just to drink lemonade at the beach.

Regarding our house, it has been difficult to wade through the legalities.  It appears that  the current laws do not allow us to live in our tiny house on its own property.  I cannot find a way to make it legal for us.  Most people seem to live in theirs illegally, but we can't take that risk with L's health problems.  Here is a breakdown of the laws.  You can either call it an RV or a mobile home.  If it is an RV, it cannot legally be a primary residence, and you can't live in it more than 120 days in one place.  If it is a mobile home, it has to meet the building codes, which it cannot due to size and the systems (plumbing, electricity, etc.)  This is a huge bummer.  Some people have asked, why not just use it as an RV and travel?  Well, that would be a great choice for someone, but the point for us was to have less "stuff" and live with less, and this has just become more stuff.  Plus, it would take a lot more gas to travel, being even less environmentally friendly. 

These are pictures from a trip out to Northern State Hospital.  It used to be a mental hospital, but is now in ruins.
Northern State Hospital Ruins

Northern State Hospital Ruins- some kind of barn stalls

Northern State Hospital ruins- the dairy farm

Northern State Hospital ruins- looking up the silo

Northern State Hospital ruins
 I had difficulty walking, so we went to leave early and ended up having a lot of fun just watching L run around in the giant empty field on the way home.
Our dog- old and happy






 We stopped by to show L the awesome glass windows in our church.  He had never had the opportunity to see them.  The light was coming through some of them so perfectly.


 The daffodils are in bloom here.  Fields and fields of them.