Tiny Salutations

Tiny Salutations


Saturday, September 19, 2015

'I don't know' versus 'It's in your head'

Last week, I was admitted to the hospital.  I stayed for four days.

I was having increased trouble  breathing.  I was unable to walk.  Yes, some of it was increased weakness in my legs, but much of it was that I simply couldn't breathe after taking only one or two laborious steps.  My oxygen saturation would drop, and my heart rate would jump sky high, no matter what I did.  Even if I never moved out of bed, but just tried to sit up more to reach something, I was winded.
My son said 'Are you sick Mama?'.  I said 'Yes sweetie, I am'.  He said 'Oh okay. Here. Hold my hand.' Because that's what I do for him when he is in the hospital (or as he calls it 'Pokes House')
I was sent straight from my primary care doctor's office again to the hospital, this time via ambulance and to a hospital further away hoping it would be more suitable to treat me.  I will say that I believe they tried.  I was there for several days, and they ran quite a few tests.  I was placed in a room labelled 'High Acuity' on a floor with a level of care between the regular hospital admission and the ICU, on watch to see if I belonged in the ICU.  A crash cart was in my room, and I was asked what I would like to do in the event that it was needed.  And although I was given things I was allergic to nearly every day, much to my chagrin, I felt well cared for initially.

On the third day, they said they didn't know what was happening, but they also felt there could be a psychological component. I would be leaving.  I was devastated and froze.  I meekly said 'Okay', and they left the room.  I asked just one doctor, instead of a whole team, to come back.  I told him I didn't understand, and I was scared to go home.  My family was worried I would die if i didn't get better soon.  He reiterated their previous conclusions.  When asked to expand upon the psychological part, he said that they felt that I was sick for so long that I have just gotten used to it and wasn't trying hard enough.  Suddenly and unexpectedly, I began crying.  Well, not just crying, loud all out can't-make-intelligible-words sobbing.  I said 'I just want to play with my son again. I really feel I am trying hard'.  I have always done everything doctors have asked of me, even when it isn't easy.  I sobbed loud and hard for over an hour.

I have heard several people, friends and strangers, say they have been told their illness is all in their head.  I have never heard this myself.  After all, I had diagnoses, many of them.  I thought I could expect to hear it at some point though.  And having that forethought, I thought I would handle it well.  But I didn't.  I shut down.  I was so depressed that I barely talked for two days.  Even to my family.  Even when I went home.  I just stared blankly ahead.  So I left the hospital feeling physically the same, except additionally feeling terrible about myself.
A silhouette of my son and husband in the window of my hospital room
I am familiar with depression.  I went through more than ten years of intense depression, and I know that if I don't have the will to stop it at the top of the slippery slope it is very hard to get back out.  So after I got home, I started to pull myself out. 

My husband tried to tell me that they just didn't know what was wrong, and maybe they felt the need to have some sort of diagnosis.  I have left hospitals with the 'I don't know' statement, and although they can be disheartening, they are not damaging and crushing.  I don't expect everyone to know what is wrong, doctors are humans too and subject to the same shortcomings as the rest of us.  They can't know everything.  I am very medically complicated with five autoimmune diseases and have grown accustomed to the 'I don't know' response.  But I realized that those 'It's in your head' statements, the same ones others around me have faced, are not helpful and can be very damaging.  These statements turn the problem back around on you.  They say the problem is not in the mechanics of your body, but in the essence of who you are.  That the problem doesn't lie in all of those abnormal tests, it is inherent in who you are. 

I understand that is not how they want it to come across, that possibly they really want you to get help, but I don't believe that is the right way to do it.  And since I am not one to complain without any ideas of solutions, I will offer this.  I would much prefer to be told 'I'd like to start you off with a counselor to speak with, since being ill for so long can be hard and stressful'.  This way separates the problem from who you are and focuses the problem back on your body and your situation.  I think even problems of depression (and other mental illnesses) by itself should be treated this way.  It is never helpful, nor motivating, to hear the problem is you, that you are not trying hard enough. 

Honestly, I don't think I could try any harder.  I have multiple disabling conditions and a disabled child.  I have a lot on my plate.  And every day I try my hardest.  Some days my hardest is in my wheelchair and some days my hardest includes attempts at walking and doing routine tasks.  Just in July, I was walking most of the time with my cane, and every time I land back in my wheelchair full time, I slowly work my way out of it.  I agree that I have some anxiety about walking, which I think is valid and legitimate after being stuck in places, like the back of a grocery store, unable to make my leg take another step or the many, many falls I have had, no to mention the intense joint pain.  But I always make an effort.  And although often recovery is slow, I am always trying.  I have always been hard working.  When I was younger, I started college at 16 and for the next seven years, I had always had a full time job with full time school until gaining my Masters degree.  I worked two jobs while caring for a medically complex infant and being quite ill myself.  I may not earn an income now, but I still work hard every day.  It just so happens that things like dressing myself, moving between rooms, and taking myself and my son to medical appointments is the hard work that I do.

I cannot fake abnormal blood tests, including all of those that have confirmed my many autoimmune diseases.  I cannot fake abnormal imaging.  I cannot fake abnormal respiratory tests, especially when those tests come out exactly the same in every triplicate test every four hours.  I cannot fake the alarms and worried nurses rushing to my aid when I am simply trying to transfer to the restroom.  Just because those don't easily fit together into a textbook diagnosis, doesn't mean they aren't real and that I don't feel the consequences of those.  I don't enjoy having to tell my son every day 'Sorry sweetie, Mama can't do that'.  I don't enjoy cancelling plans with my friends and family last minute.  I don't enjoy being unable to cook or care for my family.  I don't enjoy being unable to use the restroom by myself.  I certainly don't enjoy being restricted during my hospital visit to using the bedside commode while being helped to transfer and undress by two nurses... and using the commode in front of an audience of two or more people. 

The other unfortunate outcome of this is that I have no one to turn to for medical care.  I have been turned away from countless doctors being told that I am too complex for them to feel comfortable handling.  I appreciate the honesty, I do.  But it leaves me with the question, who will?  I feel I have exhausted the system.  Everyone points me to the University medical system, that they are the only ones able to deal with my level of medical complexity.  Yes, they have wonderful facilities and knowledgeable doctors, but they are very, very busy.  I am grateful for them, and they have saved my life before and will likely ultimately do so again. When I call to say I am sick, they tell me that I can come in for an appointment in six months.  That can help with long term care, but what about now?  What about when I am sick and am not functional now?  I always make those follow up appointments, but those times in between when I am sick and the people around me are afraid of losing me, I have no one.  If I call the University, I almost never get a call back.  Local specialists won't see me.  My primary care doctor will see me, but is not equipped for these types of complex illnesses.  Local hospitals even turn me away, and the larger hospitals are either stumped or angry that I am there if I am not actively dying.  So I am left feeling on my own and feeling there is no one there for me and willing to help.  I'm sure I'm not the only one in this place, this lonely scary place of serious illness.  We are the lost of the medical system, with no one there to fight for us, because the ones who are there for us are holding our hands and just trying to hold our lives together with arms that simply cannot reach the breadth of things that have fallen away from us.

For my son, who has sensory integration issues and autism, us snuggling is a rare moment that feels so sweet

My son loves making funny faces, and laughter is good medicine

More snuggling

Pulse oximeter

Sunday, September 6, 2015

Health update: Emotions of serious illness and dying

In the last two weeks things have gone downhill.  I am very sick.  This is possibly the sickest I have been.  I am in a myasthenic crisis.  This is a serious complication from myasthenia gravis, my neuromuscular autoimmune disease.  Basically, in myasthenia gravis, the signal from your nerve to your muscle is interrupted by antibodies from your immune system (that are made by accident).  A myasthenic crisis is when myasthenia gravis becomes so intense that it seriously interferes with your ability to breathe.  My lungs are only operating at about 30% or so.  I am getting extreme headaches from low oxygen every day.  Unfortunately, low oxygen headaches cannot be treated with pain medicine. It just doesn't work. 
In the hospital
I was sent to be admitted to the hospital.  The University hospital had no beds, so I was sent to the local hospital.  I was pretty unimpressed with the local hospital.  They sent me home after only 6 hours, no treatment, and no improvement.  They said there was nothing they could do for me locally.  Instead of transferring me, they sent me home, since they didn't have the resources to treat me there and still no beds were available elsewhere.  The part that I was unhappy with was that my vitals are not good, even when I arrived in triage, and they never put me on a monitor to watch my vitals.  Even after doctors stating that they were not that great.  My heart is working way too hard to try to keep my body going.  My blood pressure is high, and my heart rate is well over twice what it should be.  Several doctors have said that it is because my body is under such strain trying to keep me alive that my heart has to work much too hard. 
A plethora of needle pokes
I saw a local neurologist, who said I was too complex to be treated in his practice or even the local hospital.  I am used to being told I am too complex.  There are few people who have five autoimmune diseases and so many serious complications, and I am often passed on.  I appreciate the honesty, but at the same time, someone needs to try something.  The neurologist did some basic strength testing, all of which I failed.  He wanted to admit me to a neurology ICU in another nearby city.  I made the decision to wait for now, but will probably be admitted to the ICU in a few days if I am still in this condition (which is likely), or sooner if I get worse.  The concern is that my lungs will get worse, and I will stop breathing and not begin again.  I will likely need to add another stronger chemotherapy and have plasma exchanges, where they take out my sick blood and replace it with someone else's healthy blood.  I have not stopped breathing while awake in about a week.  Nearly two weeks ago I stopped breathing several times while awake, which is quite serious.  I continue to use a machine at night to keep me breathing while sleeping, although some nights it is not adequate. A few times I have had nights where I stopped breathing twenty times per hour, some of those times being several minutes long (once nearly ten minutes).
My machine keeping me breathing
My quality of life kinda stinks right now.  I am confined to bed and have been for a little over two weeks.  I have been unable to take photographs, which is a fundamental part of my life, since I have been mostly unable to leave my bed.  When I need to get out of bed and transfer to my wheelchair or the bathroom, I get entirely winded.  That small movement is like I tried to run as fast as I could.  My lungs struggle so hard that I start to pass out sometimes from lack of oxygen.  My hearing and vision also struggle.  It is difficult to read, another fundamental part of my life, because my eyes get tired and spasm or blur into double vision.  I can basically only watch movies in bed.  In the last three days I have been able to sometimes stand on my own though, so little things, you know.

Right now, we just don't know what to expect for the future.  I have started to teach my husband how to manage the things I have always done, like finances, insurance, Layne's health stuff, paperwork, just in case.  I still may get better, but I may not.  They said they didn't think I would leave the hospital when I had Layne, so the time I have already had has been a gift.  It seems that I just continue to grow more sick.  Family has talked with me about planning for the future in the event that I don't make it much longer.  They have been the ones to ask.  It is that obvious, even to others that don't feel what it feels like to live in my failing body, that dying is a possibility.

My life has significantly changed, especially in the last six months.  A few years ago I used to hike every day, and easily hiked 20 miles a week.  I was hardly home and walked in the wild with all my free time.  Along the shore, in the mountains, in old growth forests.  I had a vision of how my life, and motherhood, would be.  I would make discoveries in science that would open people's hearts to conservation, and I would spend all of my days walking in the wild with my son and show him all of the wonderful things I knew about the world.  He would be amazed and would fall in love with nature as I had.  Life changes.  Expectations of the future and of motherhood are not always possible. 
I made this sketch a while back.  I wanted to capture my dreams on paper, since as an artist I am better at showing my dreams in pictures than in writing.  This is how I would imagine my perfect life- on the ground showing my son all the amazing things the world holds among the wild places with my husband and ancient dog at my side.  A reality that even if I live another 10 years, is not possible in my ailing body, although a dream that I still cannot give up completely.
I am left with the idea of 'what do I want to do in the world?'.  I've always imagined I would do something important. Something that made a difference in peoples' lives.  I have made a family.  I have created a child, someone so beautiful, and I have loved him so much.  He will know that.  I try to feel that that is enough.  But it is hard to feel that way.  It is hard to let go of my idea of the life I will never have, even if I live another 10 years.  The life where I make discoveries, where I make a difference, where I impact the lives of those who need it, where I feel like I have done something my family can be proud of, something God will be proud of, something that I can say I used my life well.  Everyone wants to have done something meaningful in their lives.

Both of my siblings are having babies, and it hits close to home.  Many women that have unhealthy babies, and are unable to have any healthy children, struggle with their family and friends having healthy children.  Many have told me that they can't even see their pregnant friends or photos, because it is too painful.  Those emotions are quite complicated.  So far I have been overjoyed with my friends having children.  My best friend just had a baby, and I was very happy for her and happy they were both healthy.  However, when it is family, and both of my siblings, the emotions are complex.  Particularly when I am so sick.  It feels cruel and unfair that others who do not plan for children can grow and have families, while I would have loved to plan a family and stay here and grow up with them.  Especially when others complain about pregnancy symptoms.  I would have loved feeling my son kick or getting big and round, and I rejoiced in getting nauseous knowing it was from my precious son.  These feelings do not come from a place of anger or malice, but from a place of grief, sadness, and loss. While I am happy for my family, it also comes with a painful grief that I did not previously feel with my friends' children.  A grief that while the rest of my family grows and works toward their dreams in life, I continue to diminish and lose my dreams in life.  I still adore their children, love their photos, and celebrate with them.  This recent deterioration in my body has created feelings of loss that I just didn't feel before.

I may be dying, but I may not.  It is difficult to know.  If I continue to deteriorate in the way I have been, the future does not look good.  Doctors do not know what should be done and don't agree on treatment and outcomes, but so far they have all agreed that I am not in a good place, and I am seriously ill.  With this piece of knowledge, it is difficult not to think of the future and what it holds for our family.
My amazing superhero
I have some updates on Layne's health as well.  He will be getting a surgery sometime in the near future.  We are still trying to figure out what the best timing would be.  They are unsure as to what exactly he will require until he is sedated.  They suspect he will need surgery just above and just below his vocal chords.  Just above his vocal chords, he has an anatomical issue that prevents his airway from being closed while he drinks.  That is why he aspirates (drinks into his lungs).  It is either a congenital cleft (I have some cleft birth defects) or damage from being intubated for so long.  Below his vocal chords, they suspect he has a hardening and narrowing of his airway.  This would help explain why he has stopped breathing so much, particularly the times where he has had to receive emergency treatment to begin breathing again.  He may also need some additional tissue removed from his lower airway to open it up more.
Since he has had so much trouble with getting worn out and tired after only a short period of activity, he also underwent an echocardiogram.  He has had some heart defects, so we were checking for any other reasons besides lung disease that he may fatigue so easily.  At physical therapy, he only lasts about 20 minutes, then gets tired and sits in the swing for the rest of the time (on a good day where he doesn't meltdown).  Aside from getting blood drawn, the echocardiogram was his least favorite thing ever.  He screamed and had to be restrained.  We do not have any results yet. 

I realize this blog post is full of emotions, many of which may make those reading uncomfortable.  I aim to be real and open about those emotions that accompany serious chronic illness and the possibility of a limited lifespan.  I may come out of this crisis and I may not, but the emotions that are felt are very real and are felt not only by me, but by those around me.  I am not asking for anything.  I just want to open a window into my life and share so that other families facing serious illness may be able to understand each other better and not feel alone.