2016 Year of the Patient: Marie McNamara

My name is Marie McNamara and I grew up in a large Irish Catholic family in a small town in northeast Iowa, with 2 sisters and 6 brothers, I was smack dab in the middle.  We grew up outside of town, across the road from a lake and a huge park, the world was my playground.  Many of us Mac’s were very competitive, with each other and actually against anyone.  There wasn’t anything in my mind that I couldn’t do.  There wasn’t a sport I wouldn’t try or a challenge I wouldn’t accept.   I foolishly passed on a couple collegiate scholarships and moved to Des Moines, amazed by what the big city had to offer.  I still loved going back home for the boating, swimming, skiing, camping, biking, the outdoors and ice cold beers, family and friends.  Life was indeed grand.  However, at age 25, things changed drastically for me and my life as I knew it. 

My name is Colleen Harper – Marie (Mo) is my sister and best friend.  Most people will claim to have their sister as a best friend – ours is truly that, we’d be friends even if we weren’t sisters.  Most of our nieces and nephews think we are the same person – we are alike in so many ways. 

Marie and I were two of nine children.  We shared a bedroom until I was 14 and Marie moved out of the house.  I do not recall a time when I didn’t know what she was doing or who she was with – we have always had that connection – even when I lived away for 19 years. Marie has always had a ton of friends.  We were fortunate enough to grow up in a town where the kids you started grade school with are the same ones you graduated high school with.  To this day her friends from when she was five years old are still a very tight knit group that gathers together as often as possible.  She was a popular “jock” in junior high and high school.  Her friends were always at our house and I considered them my friends too. There is one point in time where we disconnected but other than that we’ve been with each other through thick and thin.

Mo - I was tired and my joints hurt.  I told myself to toughen up, not letting any type of pain slow me down, I simply needed to work through it and shake it off.  I thought perhaps it was because I was simply burning the candle at both ends.  I was playing softball at least 5 nights a week, my back hurt and I couldn’t get either one of my arms straight so I was sure I had thrown my back out.  My journey here is different than most people.  I went to doctor, which I rarely did because I was young and healthy!  They did a handful of tests, took x-ray’s and said they would contact me by the end of the week.  Within 24 hours, I had a call from my doctor at home telling me I had Systemic Lupus Erythematosus (SLE) and that he wanted to get me into a specialist right away.  For that quick diagnosis and being able to treat my symptoms I am grateful.  I didn’t have to go through months and years of tests and suffering the majority of people do.  However, for me, it was as if my world was crumbling right before my very eyes.   Remember, there was no internet, there was not updated or current reading material, most everything referenced death, there were no support groups, there was absolutely no one to talk to and I was suddenly this young girl in a big city feeling very alone.  I never spent time inside for anything.  I lived to be outside.  I was put on several different medicines, told to basically stay inside.  Suddenly I was confined to the indoors and to me, that was a death sentence.  While I was able to hold down a full time job, my life was a complete fog, there were and are about 18 months that I don’t really recall to this day. 

Co - I was with Marie the night of her first true flare, although we didn’t know what it was at the time.  We’d been to my brother’s house and out on the lake and in the hot tub for the weekend.  Saturday night was probably one of the worst nights ever.  She hurt so badly, she couldn’t lie down, she couldn’t sit up.  She knew she was sick, she didn’t know what.  She wouldn’t let me take her to the doctor/hospital so we stayed awake all night and then drove back to Des Moines.  Once she was at home, her roommate made her go to the hospital. 

I don’t recall exactly when she told me what it was.  I remember a feeling of dread.  Our sister-in-law’s sister had been diagnosed with Lupus.   She died at age 21.  It had all of us scared, obviously Marie the worst.  She also looked up Lupus in a very old set of encyclopedias that our parents had – from 1968 – and the entry on Lupus was an awful description.  They treated it with the big old radiation machines, no drugs were prescribed, no cause, no cure and it was fatal.  How do you go forward with something like that – how do you wrap your head around it?

In the meantime, I lived with, married and ultimately divorced very controlling unreasonable men who at one point forbid me to have contact with Marie – during this stretch of time Marie and I had little to no face to face contact.  Only after I handled that situation were we able to reconnect.  This is and probably will be one of the biggest regrets of my life.  Not being there during that crucial first few years of this disease. 

Since then I have been 100% by her side and always will be – nothing shall come between us again.

Mo- When you live with Lupus, you are truly a great master of disguises.  You don’t want anyone to know you are sick.  When anyone asks, you say “I’m fine” and with Lupus, very seldom do I ever look sick.  It is hard to let people in, even your family and friends.  You don’t want anyone feeling sorry for you, you don’t want to feel “different”, you don’t want people judging you when they don’t even know anything about you or your situation. 

In the beginning, I felt like I was just being lazy and believe me, I was harder on myself than anyone ever could have been.  Your mind says one thing and the body does the opposite.  Having lived with Lupus for so many years, I pretty much know what my limits are, how active a day can and should be, rest is a HUGE part of my life.  There are many times when all I can do is go to work and come home and go to straight to bed, then turn around and have to spend the weekend in bed.  A really down day means I can’t get out of bed, literally, I can’t even lift my head and with the nausea, headaches and body pain that can be unbearable, crawling to the bathroom.  I know what others go through and this is nothing compared to them!  When I finally feel better, I get to put on the smile and go back to work and pretend that I am feeling better when really, it is taking everything I have just to get through a day of work.  Please note that I don’t have bad days, I have down days, bad is too negative for me. 

It has been a LONG road, however I am basically drug free, down to one medicine.  My acupuncturist is Yimin Xu, he has been helping me manage my pain for at least 16 years.  I have literally felt the pain leave my body when getting a treatment and trust him completely. 

Co- The worst part is not being able to help or take the pain away or the emotional upheaval.  You want to be able to help or mother but with someone like Marie, you can’t overdo – she knows how far to push herself and when to rest.  It’s just that desire to protect kicks in and you want to take over. 

Mo - Every day is a good day to me, even the days that I am down.  I have such a positive attitude; it takes a lot to get to me.  It is so easy to be happy, to be kind, and to find the good in everything, even on my down days.   And I am totally blessed, I have MANY more up days than down ones.  I know me, I know my body, I know my limits, and I am my best advocate.  I still love to swim and bike, love being out on a boat.  However, everything that I do has to be in moderation.  I do make each day count, so when I am having an up day, I can’t quit smiling, I love me, I love my energy, I love my life, I love God. 

I love the fact that I have an unbelievable support system, my husband Doc, my family, my friends.  We have the most amazing AND FUN fundraisers. 

Co - She knows her body best – the mother hen in me wants to take over and tell her what she can and cannot do but then she puts me in my place.  She is her own best champion – she knows what she is up to and when she needs rest – My hard head keeps trying to manage her life – I can’t she has learned through the years and I need to remember that. 

Mo -My hope for the future, is that they find a cure for this cruel disease.  What gives me hope is, honestly, the exposure and the awareness that Lupus is finally beginning to receive.  More and more people are hearing about it, asking about it and wanting to know more.  It is true, “someone you know has Lupus”. 

I know that God chose me because He knows I am strong enough, there isn’t anything He can give me that I can’t handle.  “When you saw only one set of footprints, it was then that I carried you." -  Author Unknown.  Thank you Lord!   It is with my strength and faith in God that gives me an unbelievable feeling that once again I can do anything! 

I always know and remember every day is a new day, I embrace each one of them with hope and joy.  I have seen the richness of my life improve.  I am blessed.  I may have Lupus, but I consider myself to be healthy and I thank the Lord for my life and that health every morning and every night.   

Co - My hope for the future?  That’s an easy one…. FIND THE CURE…. realistically - that Marie will not have to face the hardships that others with Lupus have had to.  Yes, she has really bad times but we also know several people who have been through so much worse.  Her attitude is amazing though – rather than any type of pity party, she faces each new day with positive thoughts and a can do approach.  Her faith and sprit are truly amazing.   She knows I am and always will be here for her……bottom line.
Mo - In closing, my personal thoughts - if you haven’t read The Spoon Theory written by Christine Miserandino, I highly recommend it.  It will provide such an insight to the daily challenges someone with Lupus faces.  Some days I have more spoons, some days less. 

Thank you for taking the time and reading my story!  May God bless you all.