Some Advice and Tips About MS -- From a Nurse with MS

Dealing with MS is a huge challenge in itself.  Add surgery and post op complications and things can go downhill very fast.  Fatigue can set in quickly, and before you know it, you feel depressed and defeated.  As a nurse and woman with MS, I recently experienced an overwhelming health care experience. I hope that by sharing my story it will help other patients through their own experiences just a little easier. 

My medical history is very complicated and I will just say MS just adds to the medical symphony I deal with each and every day.  I recently underwent a hip replacement.  Having had the prior hip done last year, I wasn’t concerned about the post op recovery.  I breezed through it and was dancing at my daughter’s wedding three months later.  However not all surgeries are alike.  After this surgery, I developed a bladder infection, a blood clot and my blood pressure skyrocketed.  As usual, on day three post op, my health care providers came in to prepare me for discharge.  Thankfully, I know my body and its nuances very well and something made me insist on an ultrasound in my left leg to rule out a blood clot.  I was experiencing pain that I knew was not there pre op.  The hospitalist assured me that a clot in my non operated leg was highly unlikely.  I insisted and low and behold, I am glad I did.  Self advocacy is so important.  Learn to speak up and verbalize your thoughts.  As a seasoned medical professional, my best advice is to make your provider listen.  Make them really listen.  Slow them down if you have to.  All providers are busy and sometimes need help to help you.

This leads me to my next obstacle.  I was discharged home on blood thinners and developed the two other complications I mentioned above.  The high blood pressure was beginning to become worrisome to me.  Luckily I was able to monitor my own and final made the decision it was time to go to the ER.  The first Emergency room visit was 8 hours and I was sent back home after my pressures stabilized.  I then developed a fever of 103.  At this point, I was extremely sick and frustrated.  I began to have symptoms of an exacerbation of my MS.   We all know that stress makes the chances of exacerbations increase. Not only did I have physical stressors but now my mental state and fatigue were getting the better part of me.   All I could think about was how do patients who have no medical background deal with all of these issues, and navigate through the system.  The exacerbation put me over the edge mentally and physically.  It was time for a family member or visiting nurse to take control.  Part of dealing with issues that occur is knowing when to give up control, and let others help us.  What could have been a botched symphony needed a conductor.  So here is my best piece of advice, find a primary care provider who listens and knows you well.  One call to her and she organized my care.  She realized I was too sick to be treated on an outpatient basis.  She had me admitted and she organized conference calls with my four providers.  Each provider participated in making up a plan of care to make me healthy again.  Finally everyone was on the same page. 

So what I want you to take from this blog is that not everything goes according to plan.  When life throws you lemons, there really are ways to make it into lemonade.  Always find a primary care doctor who listens and you have a good relationship with.   Speak up.  You know your body and when something isn’t right.  When you are depressed and feeling defeated let someone else speak for you.  Family, friends, providers can all be advocates if you just ask for help.  Added stress and fatigue just make things worse.  It is not a sign of weakness to ask others to lend a hand.  There will always be a day when you can lend that hand back to them.  There were days when I never thought I would dance again but low and behold its time for those dancing shoes.  It will have to be a slow dance in my case but dance I will.

--SUSAN RN

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