Posted by: sistermom1 | September 18, 2011

Home from the Hospital

I have been home from the hospital for about two weeks. I am still beyond exhausted, but I am so happy to be home and to have the Baclofen pump. My surgeon says that I am doing very well — much stronger than he expected thanks to the work of the physical theapists (who were excellent!)

I wrote earlier about the many challenges that I faced in the hospital – particularly dealing with a less-than-ideal nursing staff.  Although I am not typically a complainer, I even had a major argument with a nurse about the way that she was interacting with me.  (Can you imagine someone naked on a bedpan engaging in a heated discussion about how she was being treated?  That was me — I have to laugh when I envision it, although it was not pretty at the time.)  I resisted the notion to let it pass since I am happily at home, and in the spirit of making it better for those still in the hospital, I did write a detailed letter to the hospital’s leadership, and mailed it yesterday. 

The letter included positives as well as negatives.  I had a difficult stay — much worse than my previous stay in the same facility 4 years earlier.  Although the doctors and therapists were fabulous. the nursing staff as a whole was shockingly bad and dealing with them really draining.  In addition to my daily prayers for wisdom, courage and confidence, I tried hard to use the techniques that I learned in The Empowered Patient, and I am so happy that it is over!

Getting back home I found a changed household.  My husband has been in charge of everything for the past month — without my” mother’s eye” watching over things.  As amazing as he has been and continues to be, when I got home I saw every bit of dirt, misplaced laundry and unclean dish left in the family room.  What can I say — through all that we have experienced this past five years, I still am fighting the need to keep a perfect house. 

I mean — it really is outrageous when I think about it.  After all, I have been in the hospital for three weeks longer than we planned.  Over the past few weeks, a new school year has started, our son has started running cross-country, our daughter needs eye glasses, and both children have started a new year of scouting (our son has started his Eagle project.)  I did get home in time to celebrate both kids’ birthdays on Labor Day weekend, which was encouraging and exciting. 

Life really has changed for us – again.  My husband purchased a hospital bed for me — our bed is upstairs (it remains difficult for me to get there),  and is one of those pillow-top mattresses that is a challenge for me to get in just yet. He also is purchasing equipment to make it easier for me to get into our mini-van so I will be able to get out of the house more regularly.  We have already gotten much more equipment to help me with my ADL (Activities of Daily Living), and I deeply  appreciate being able to acquire what we need.  Thank you Craig’s List!   

I am facing the need to take things from where they really are rather than being frustrated by where I want them to be.  One of the challenges that I face is remaining positive,powerful and appreciative throughout these changes, while accepting my true feelings – not matter what they are at the time.   In our most recent session, my physical therapist reminded me that one of the most difficult parts of managing MS successfully is navigating through the emotional changes that the disease often presents. 

Depression is one of the biggest challenges that MS patients face, not only because of the unpredictability of the disease itself, but as a potential side-effect of the disease-modifying drugs that we are taking.  I fight every day to find the right encouragement and support — most often it comes from my mentor in life, Daisaku Ikeda:

“The course of our lives is determined by how we react—what we decide and what we do—at the darkest of times. The nature of that response determines a person’s true worth and greatness.”

Remembering that life does keep moving forward (with or without me), and that everything is determined by my attitude, I have refreshed my determination to win — me and my entire family.  I thank everyone who has helped me make it through this latest stage, and thanks in advance to those who we will encounter in the future.  I am definitely on my way, climbing the next mountain in my pathway — with a lot less pain, a lot less spasticity, more members of my health care team, and an even more positive attitude….


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