Tiny Salutations

Tiny Salutations


Tuesday, May 19, 2015

When the ER is not helpful & permission to break the rules

As I alluded to in the last post, I have gotten weaker and things have been a bit more difficult.  It gets better and worse.  I had another weakness "episode" this week.  I am always a bit weak and it is always a bit difficult to walk. At times, I can take a few steps and walk somewhat around the house, although I have a limp that makes me look drunk (since my left leg is too weak to bear weight fully). 

This week though, my weakness "episode", similar to the previous two "episodes", I was much weaker.  I had difficulty breathing, walking, holding myself upright, moving my mouth, and holding my bladder.  I am also having increasing trouble hearing and seeing.  I tried to go to the ER, but it was so busy I had to leave.  We chose the ER that I went to, because they can have access to neurologists, but the hospital itself is terrible.  The area of this ER doesn't have any urgent care clinics, so everyone goes to the ER, even if it is not an actual emergency.  Well, I waited there 3 hours before even seeing triage.  The triage nurse said that I absolutely need to be seen right away, but there were no available beds and it could be several more hours.  I had also been sitting there soaked (I lost control of my bladder remember?) and had not been helped at all to get dry or warm up.  After some more contemplation, we decided to leave.  I would not be able to see a doctor basically until the next morning, waiting with a 3 year old in the waiting room overnight, and then that doctor would not know me, find my situation complicated, and not be able to do anything until they talked to my doctors anyways.  So I decided to go home and sleep, which always helps, and see my own doctor the next day.

{As a side note, I went to this same ER once with my son, who was seriously struggling to breathe and only a year old.  He really needed medical assistance immediately.  We also had to wait over 3 hours before being seen and were just given oxygen to strap onto his face until then.  I kept bugging the nurses to let him see a doctor and they said 'if they thought he would die immediately they would let him', but since he was still alive although obviously struggling he was okay.  Obviously they have never had a baby of their own not breathing.}

So my doctor doesn't really know what to say either.  He is trying, but as a family doctor, it is a little out of his realm of expertise.  He is talking to my other specialists, trying to get an idea of where to go next.  I am getting a specialized MRI, after which, we can figure out what's next.  So far, the best guess is that on top of all of these other diseases, I have MS (multiple sclerosis).  When updating my hearing aids, my audiologist was shocked by how much my hearing had decreased.  My hearing aids had to be reprogrammed, but I still can't understand certain people. Some people just sound garbled and I just can't pick out words easily.  Some of those people happen to be people I love and want to talk to (so don't be offended if I don't want to talk on the phone, it's not you).  It seems that there is a problem affecting my nerves and also something separate with my phosphorus.  My phosphorus is a complete mystery.  I keep quickly losing phosphorus, then suddenly having enough, bouncing back and forth.  So far, we cannot tell where it is going.  My kidneys look like they are doing okay and, at least when testing, not dumping my phosphorus.  Gosh, who knows?

Recently I agreed to make an art project for the Anacortes Arts Festival to spread awareness about marine debris (aka trash in the ocean).  While in this meeting to discuss what they wanted, my phone died.  My husband couldn't get a hold of me (he was out in the parking lots with the little one), and I was taking longer than he expected.  He actually thought I might have died.  This is where we are at right now. (I am however, excited about having a piece in the Anacortes Arts Festival.  It's a pretty big festival.)

These are trying times.  It is tough to accept it when I am a young mother in control of so little of my body.  I want to play with my son.  I want to walk on the beach and teach him all I know about the ocean.  All of the things I looked forward to when he was tucked inside my belly, feeling like I was a superhero and he my sidekick, are not coming to pass.  I have recently asked God for mercy a few times when I felt like I could take no more, to be taken before given too much to handle.  I can handle pain or weakness, but both together feel insurmountable sometimes.

I am still in control of my mind though, so I have to find ways to make things okay.  I went through 10 years of deep depression in the past, and the one thing I have learned is that even when it does not feel like it, I am the only one in control of how I feel.  Even if I don't feel like anything can make me happy (which I am not there currently), I must do things that I like.  It is my responsibility and no one else's to make me happy.  I also learned how to cover the way I feel with a smile in those 10 long years of depression.  I have had people say I don't look that sick (aside from the wheelchair) and that is why.  I don't think I even have control of this upbeat cover, but I don't think I would want to either.  It is good to stay upbeat, whether you feel terrible or not, to keep yourself from falling into a dark place that is hard to climb out from.  I am never dishonest about being ill and talk about it openly, but I just choose (or reflexively) put on a happy face.  I have this place to be honest and open and hopefully to help others in a similar situation to feel less alone.

Part of making myself happy is letting myself break the rules of what a Mom should be.  I am a pretty harsh judge of myself and how well I am parenting.  I cringe inside when we stay inside all day and watch movies.  It is me who can't go out, not my son.  But being with my family is what holds us together and what makes us happy.  So if that means, sitting in bed watching movies, so be it.  It may be for several days, but at some point, I will feel well enough to go outside in the yard, then the woods (on paved trails, which are short in supply, I might add).  So, I would like to give all sick Moms or Moms of sick babies permission to break the rules.  These are rules you set for yourself and when you can, rules you can go back to.  And trust me, I know this is tough and something I am still learning.    

And because photos make me happy, here are some of my family in the yard a little while back....
(For those of you who have been wondering, he is wearing his compression suit here without a shirt on top.)

Such a happy dog!