It’s Hard To Be Brave, When…

When you suddenly become sick with any illness you find yourself feeling very small.  Navigating the world of doctors, nurses and other medical personal is like entering a strange new world.  You find yourself losing your voice and unable to speak up when something is just not right.  Any insecurities you may have are magnified and suddenly you may be unable to advocate for yourself.

Now think about having a chronic illness, knowing you have a lifetime to deal with the medical profession and feeling your own self advocacy voice growing weaker and tired.

A.A. Milne’s Piglet in Winnie The Pooh says it best.  ” It’s hard to be brave when you are a very small animal”.

I am 10 1/2 years into a lifetime of Churg Strauss Vasculitis and my voice is scared and weak at times.  I pride myself in being able to help other patients out and helping them to self advocate but sometimes I find myself unable to follow my own advice.  As, a patient you get put in situations that are scary and you depend greatly on the trained medical staff around you.  Most of the time they are amazing, but sometimes you get someone who’s either having a bad day, needs more training, just doesn’t care or is totally burnt out.

Yesterday, I began home IVIG treatments.  I get Intravenous Immunoglobulin (IVIG) treatments once a month so my immune system is strong enough to fend off common illness and bacteria.  I have  hypogammaglobulinemia because of years of Rituxan usage to keep my Churg Strauss Syndrome under control.    I have been doing these at a medical center but my insurance company had decided that I was no longer allowed to have them at a medical center and I would have to get them at home from a home infusion nurse.  I was not happy about this, I fought it but finally had to give in so I anxiously awaited the nurses arrival.

She arrived and I was hesitantly psyching myself into the fact that this would be a better way to get my infusions.   I have a mediport installed so there was not the problem of trying to find a vein for an IV.  It’s a simple stick into the port installed under my skin, I’ve never had any issues with it.  That’s what I thought.

My first clue that something was up should have been how disorganized this nurse was and how I had to remind her I needed to take my premeds.  The putting the needle into a mediport is a sterile procedure, the chance for infection is high if procedures aren’t followed.  I watched her, and again saw some problems.  Once again, I did not speak up.  She was going to stick a needle into me, I sure as hell did not want to make her angry.

She inserted the needle and it burned like hell, something was NOT right!  no blood return…  I told her she was not in the port — she didn’t believe me.  Finally she believed me and pulled out the needle.  It was totally bent.  I pointed this out and she stated.. “sometimes the needles come that way”, I knew this was not right.  But I was feeling so small, and so vulnerable.

I stupidly allowed her to try three more times.  Each time was worse.  I actually cried since once she tried to insert in Heparin to prove it was in and instead it went into my tissues — I yelped, I cried, It burned like hell.  Still I was the polite patient… I actually told her not to feel bad about it.  What the heck was I thinking?  It was totally her fault.  IF I saw someone doing this to one of my family members I would have stepped in and yelled at them but instead I just cried and took it.

Finally she tried one last time.  It had to be the last time since she went through ALL my back-up supplies.  It went it and was finally working.  I then had to sit there and be pleasant to her and thank her.  She then proceeded to move my medication to IV bag from the original containers and give it to me (that was another fiasco…)

In the course of the conversations she had with me I found out she has severe carpal tunnel in her hands and had lack of feeling in them.  She shared this because she was going in for surgery in 2 weeks.  WTH?  What was she doing trying to insert needles then?  Suddenly all the things she dropped made sense.

Six hours later she left.  I actually Thanked her for coming (what was wrong with me?).  The door shut and I let it all out.  I screamed, I cried and I cussed like a sailor.  I thought I was going insane so I texted a friend and she was appalled by what happened.

WHY could I not advocate for myself and kick the nurse the hell out of my house?  Why did I allow her to cause me such great unnecessary pain?

The answer is weirdly simple.  I was always taught to respect people in the medical profession.  I was scared she might hurt me even more if I told her what I really thought.  I was sick and felt powerless.  I was Piglet.

The medical company that oversees my IVIG medication called me today.  I told then not to ever send that nurse again.  They asked me what happened.  I explained the 4 bent needles and her spending way too much time time transferring the IG solution into an IV bag.  They were taken back because it is not policy to break the sterile environment and transfer this medication, it was suppose to be given directly from the bottles.  I didn’t know this.  I also told them she had Carpal tunnel and the hand problems, they were also totally unaware of this.  There were a few other things but I thought this was enough to tell them.   They promised me a new nurse next month.  But, what happens if the next one is even worse?

I think we, as patients, can be strong for everyone else but have trouble sometimes advocating for ourselves.  This happens both with procedures and in a normal doctors visit too.   I have to Stop trying to do this all on my own (I prefer for nobody to see the ‘sick’ me).  I need to start having a loudmouth, outspoken advocate with me.  I need someone to ask the questions I am scared to ask and point out when something is not right.

I think, as chronic illness patients, we don’t like to ‘bother’ others.  So, we suck it up, and just do things on our own.  We don’t like for others to see us in pain, so we hide it.  We feel helpless at times and we keep it all inside.  We don’t want to be labeled as problem patients.

I have taken a friend, as an advocate, to a few of my doctors appointments in the past.  Usually difficult doctors and I want to know I am am crazy or it is a problem with the doctor.  My friends always introduce themselves as the advocate and have a list a questions we have talked about, one in particular can be a real forceful bitch, but that is just what I need sometimes.

Piglet learned to be brave with the help of his friends.  I need to take my hint from Piglet and learn that I am not a ‘bother’ to my real friends and let them help me.  Ten years in and I am still learning.  Please take my advice so you can get better care too.  Don’t wait 10 years to realize you may be very small but you can be brave and speak when something is wrong with your medical care.Other Posts by Karen in Wonderland

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2 Responses to It’s Hard To Be Brave, When…

  1. Michi T says:

    As a fellow vasci (mpa), I get it–all too well. Thank you, Piglet. Many of us get it and are right there with you in spirit.

    • karen in wonderland says:

      Thanks you, and all my fellow Piglets who are learning to be Brave and Strong .

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