9 Years Later and Still Standing

Nine years since my date of diagnosis.  Nine years since I had to stop hiding that I wasn’t ok.  Nine years since I realized I wasn’t dying.  Nine years since it was confirmed that Áine would never know me as I once was.  Nine years since the doctor said to me, “we have good news and we have bad news. The bad news is that you have MS.  The good news is that it is the best kind of MS.”



Well, those of you that know my story know it wasn’t really the best kind of MS.  They were referring to what used to be known as Relapsing Remitting Multiple Sclerosis.  Supposedly, I could go on for years and years without any new disease activity with just some disease modifying drugs.  It could lay dormant for years and years.  I recently spoke with a man my age who has had MS for over 20 years with no symptoms until he wasn’t.  His life blew up, his body started to quit on him, his mind wasn’t far behind.  He had to stop working and coaching his kids.  Noone really knows MS.  It is often referred to as a snowflake disease because no two cases are the same. 


Back to ME!!! 🙂My MS never lay dormant.  It kept attacking and taking.  Destroying and devastating, my brain and my body.  No one on the outside could see that.  They still don’t.  As I quickly found out 9 years ago, my MS was not one to hide quietly in me.  It kept coming back with a vengeance to the point where I couldn’t take care of Áine.  Where I couldn’t teach.  Where I had to retire at the age of 44.  


Of course, I am much better since traveling to Puebla, Mexico almost 7 years ago for HSCT.  I more quickly and easily remember names and words.  I can help Áine with her 4th grade Math homework which 8 years ago I struggled to do while teaching 4th grade.  I read books at my reading level -that of a well-educated adult with a masters degree.  But, and unfortunately there is always a but, I still have silent symptoms that the world doesn’t see.  I am not looking for sympathy.  I am sharing my story because it is mine and I deserve to if I want to. I also want to share for all of the other MS Warriors out there suffering and smiling and saying I am good if anyone cares to ask anymore.  


Most days, I wake up before 6.  I usually feel fabulous if I have slept.  I am excited for the day. I am getting things done.  I meditate, I write, I may read, I wake up Áine.  I make her breakfast, I make her lunch, I feed Lilly, we go to the bus, I go home.  If I have time, I go to the gym or run.  I feel great and then, it is 10:00 or so and I am struggling.  My eyes may start to burn, tears may want to push out, my shoulders may start to feel heavy, and my head may start to hurt.  I haven’t even started working yet, and I am already exhausted.

                                                            Me and Áine March 2015



So why do I do all of these things before work if I am so exhausted by the time I start to work?  It would not matter if I did all of these things or now, I would still be tired. Believe me, I have done it.  Despite the fatigue, forgetfulness, occasional numbness, migraines, I am grateful.  Who knows where I would be now if I hadn’t had a stem cell transplant.  


As I honor myself today and what I am capable of, I mourn my former self.  I wish I had loved her more and appreciated her more.  She was pretty amazing.  I know she would be impressed with who I am now, what I have accomplished, what a badass mommy I am.  I am exhausted and scared and grateful. I am really proud of myself, now,  and hopeful that our lives will only keep getting better. 




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