hospital

Suck It Up Buttercup

There are responsibilities taken in life that you never expected or wanted. That is how the last 6 weeks have been. My grandmother had her knee replaced and that meant I had to step up and try to fill her duties while she was gone. No biggie? Wrong.

The matter of cooking and cleaning at her home was taken care of for the most part by my uncle. He made sure Papa was fed and the dishes/laundry was kept up. It was all of the other things that became my burden, I was happy to do it because  it is my family and I love them. When a bill came in I would get out Grandma’s check book and forge the checks to make sure the water and the ‘can’t live without’ cable was paid. I ran errands and picked up meds.

Every other day I would go out to the managed care rehabilitation place and visit Nana to see how she was doing and keep her abreast of what was going on at her home and mine. Often bringing at least one of my three kids along so they could regale her with their tales of summer exploits. After a half hour to an hour we would leave so she could rest, go to therapy, etc.

Her being in the care facility post surgery was a God-send. She could have all of her needs met at the moment she needed them. She didn’t need to be taken to appointments doctor or therapy. It was all right there for her which made it easier on everyone and took the worry and strain off of me. There was no way I could be taking care of her at her home and still be able to take care of my family at mine.

The hardest thing, the responsibility I did not want and somewhat begrudgingly to admit hated was the care of my mother. Do not get me wrong I love my mother and there is always my familial duty towards her.

The relationship I have with my mother is complicated. Complicated by our past as much as the present. I shall give a heavily abbreviated history to give a little insight.

My parents separated when I was three. My mother left Sheboygan Wisconsin with me and came home to Iowa to be by her parents. My father an engineer would visit Iowa one to two times a year my whole life. He would come home for my birthday and a holiday such as Christmas or Easter, bringing me gifts like a bike, barbie ferrari or a radio boombox. Those visits were hard on me and I would be weepy and moody for a week or so after he returned to Wisconsin, I didn’t realize at the time how much it hurt not having a father but that realization came years later.

I grew up living in low-income housing developments as my mother and I lived on child support payments of $330-something a month. Sometimes food was a bit lean but we never starved and my mother would not apply for any food assistance and the like. I never had the fashionable clothes or the latest (you name it). I had regular visits and stays at Nana and Papa’s which was like some glorious holiday. They had cable, a yard full of green grass and trees to climb, and she always cooked big delicious meals and deserts-she also expected you to take seconds!

It is funny that as a kid you do not fully comprehend when things are not quite like they should be. Once you get older and looking back you can see the wrong that was in front of you all along. My mother slept a lot, I mean a lot. The appartment was always blacked out from the sun with thick lined curtains. When she was awake she could be loving and quickly change to teary or very angry. I spent as much time as I could playing outside rather than being inside in the dark with her. She could be abusive but I did not realize that it was abuse at the time. I would be spanked, a few times with hangers, for the smallest of infractions. Compared to the marauding gangs of near delinquent unsupervised youth in the ‘project’ complex I was an angel.

She would let me get some new to me (often thrift store) clothes and I would feel so good until she would make on of her regular down putting comments leaving me feel like I was fat or unattractive. She tried to instill religion in me by the fire and brimstone method. So I feared any misstep under condemnation to burning in hell. I never did sleepovers with friends or get involved with any extracurricular school related activities. We didn’t have money to spend on those or a car to get me there. All this and more left me so socially inept that couldn’t even talk in front of class at school without tears forming in my eyes.

As I aged I saw the irregularities of my home life compared to my peers and I saw injustice that was put upon me. I grew quietly angry. Internally I would steam over the fact that she never did anything. She never tried to better our life, get a job or education. She seemed content to hide away from life and responsibility. As soon as I graduated high school I moved out, not even telling her ahead of time for fear she would try to stop me with anger or more than likely guilt.

You may wonder about my father through all those years and why I didn’t reach out to him. Well, he was mostly an acquaintance, granted one that I loved and craved affection from, but we didn’t know each other very well. When I was nearing my teens he had remarried to another woman and my relationship with her was more than a bit strained. She came with her own set of issues and I already had more than my fair share. At that point the few visits a year were enough of a strain.

Over the years my view of mother changed, not that the anger completely dissipated but it was largely replaced with pity. She had been suffering from undiagnosed depressive disorders for years. She never sought any help with them so I in part still held some contempt for her inactiveness in even caring for herself. Then some 11 years ago my mother suffered a stroke. At that point and still to this day she was living with her parents, again a way of dodging responsibility for herself. They found her on the floor of her roonmin a near vegetative state which would last for a long while.

I was at my in-laws house having a pleasant visit when an uncle called with the news. When I hung up the phone everyone around me was hugging on me and showing genuine concern. I feel guilty about it but I was angry. It was her own fault…sleeping away her life, never doing anything to get the blood pumping, sitting and eating, getting heavier and heavier…she did it to herself-right? We left the kids there and my husband drove me back to town. During the 45 minute drive to the hospital I was quiet, trying to convince myself that I should not be mad I should be worried, that’s what a good daughter would be.

Over the weeks and months she slowly came back-somewhat. She eventually regained her ability to talk, remembered my name and gain her movement to a certain extent. These days she can talk and walk but with some definite disability. She hit the jackpot of not having to be responsible. Monthly disability payments, her aged mother to care for things at home and people to chauffeur her where she needs or wants to go. It frustrates me but at least I didn’t have to be responsible for her or feel guilty, she had all of her ducks put in a row by somebody else.

That was until Nana had her knee surgery. All of the insurance stuff and changes to Medicaid that happened this year became my job to fix and figure out. The fact that she never filed for Medicare when she turned 65 has created such a complex mess I cannot tell you how many hours I’ve spent on the phone trying to get things sorted out. Then there are all of the errands to appointments, pick up prescriptions, or going to the store to spend her money. Granted I was usually the driver for her and Nana for these day trips. But now my health issues, the kids out of school for summer, Nana’s surgery and all the rest it was seriously becoming the straw that was threatening to break the camel’s back.

I fully believe as I write this that I just may be an awful person. I am tired and tired of feeling put upon. I have gotten to the point where I am letting responsibilities at home slide. When I do get to just sit I want to do nothing but lose myself in a book. Then the phone rings and I dread answering it because what in the world does the world want me to do now. I answer it of course and wait for the next piece of straw to be placed.

I am glad to be able to help my family and I love them. So even when I am worn out and resentful of the phone ringing I take a beep breath and tell myself (often out loud), “Suck it up buttercup and get to it.”

 

 

 

 

M.S. Diagnosis

It was on the morning of February 20th 2004 when I woke up with some numbness in my left arm and leg.  I decided to write it off as I slept wrong or maybe had a pinched nerve. I got myself, my toddler and the baby ready for the day.  My husband Tony had already gone to work a couple of hours earlier and the boys needed to be taken to Nana’s so I could get to class at the community college I was attending.  After dropping them off, while I was driving to school the numbness was worsening and my left side started feeling heavy.  I figured there was no harm in calling the local hospital’s ‘Ask-a-Nurse’.

I spoke to a wonderful lady at the hospital, telling her all of my symptoms.  It wasn’t long into the conversation that her tone changed a bit and I became a bit more concerned.  I parked the car and continued the conversation which ended with her advising me to get to the ER.  The nurse believed my symptoms sounded like I was having a stroke, possibly in part due to my birth control.

So turned around and headed to the hospital, calling Tony on the way.  He immediately went looking for his boss in the factory to let them know he needed to leave.  Upon arriving at the hospital I told them all that was happening and they rushed me back and hooked me up to an EKG.  My heart was fine.  By then Tony was there and the hospital staff was sending me for a CT scan.  That came back fine as well.  Next they had me do an MRI.  While sitting in the impossibly cold room waiting to hear about this final test I prayed…

“GOD please have them find whatever this is, I know this is not all in my head, give us answers and we will deal with them as we need to”.

You see for years, even as far back as high school, I have had these odd things come and go.  Pains, numbness, severe fatigue, and a whole myriad of other little things.  Physicians had on more than one occasion said ‘yes you have these things but we see no underlying cause’ alluding to it may be all mental.  Sitting there I was terrified that I was going to be told it was all in my head again.

When the doctor returned his face was concerned looking and he sat down on a stool and slowly began to tell us their findings from the MRI.  The physician said it looked like I had M.S. (multiple sclerosis) and that he wanted to send me to a neurologist as soon as possible.  I looked at my husband he looked like he just saw a terrible injustice; he looked at me with strong devotion and sympathy.  I wasn’t sad, scared, or even upset.  The sick thing is I was relieved.  It was ‘real’ and it had a name.  Granted I didn’t know anything about this disease at the time and I am sure I was exhausted from the hours of tests, but at that moment I was numb mentally as well as physically.

When we were finally allowed to leave the hospital we were both spent. Tony assisted me to car because by then I could not walk without aid. I didn’t want to tell anyone until I understood more but as it was we had to get our kids from Nana’s.  So there was no choice in telling them or not.  It was strange seeing the faces of my grandparents as Tony explained for me what all had happened.

Papa sat very still and listened but the old man’s brow was furrowed as if he was working on some sort of difficult task. Then there sat Nana in her chair, she looked helpless.  This woman is a rock, never did she put up with anyone’s guff, and she could do anything she wanted to put her mind to.  I didn’t comprehend this until years later when she told me what was going through her mind.

“I felt like the universe betrayed me, you are my first grand-baby and you were never have anything bad happen to you.  I was always going to make sure of that.”

There was certainly some humor that night though.  My mother has always been ‘special’ in her comprehension and certainty in her knowledge.  She began to tear up and pace about the room while Tony was explaining all of the events and results of the hospital trip.  I don’t know why but the whole scene for me was like I was outside of it all.  Watching the people in that comfortable, if not overly furnished room, as though it could have been on the television. Granted I was right there in the middle of it sitting in the chair by the fireplace holding a wiggly toddler on my lap.

That is about when my mother said,
“I am so, so sorry. You must have caught it from me and your father.  Something in our genes must be faulty.  It’s just not fair that my only child is one of Jerry’s kids!”

That’s when I snapped back into reality.  One of Jerry’s kids?  This struck me oddly funny seeing as I used to watch the MD Telethons and I knew at least this much, Multiple Sclerosis is definitely not Muscular Dystrophy.  So tired as I was and mildly irritated for reasons I’m still not sure I responded with a bit of biting yet giddy tone,

“MS not MD! GOD bless them but I’m not a telethon kid! “

The rest of the evening must have been unremarkable, seeing as I recall little about it. Tony got me home and put me to bed.  It would be one more long and uncertain day before I would see the neurologist.  The next day I saw my new neurologist, a Dr. Bekavac.  I had to have more MRIs done, with and without an injection of contrast to show active lesions.  I learned lesions are scars where the immune system is attacking the protective covers on your nerves.  Fun, huh?  That was followed by a spinal tap, not enjoyable but if you have ever had an epidural it is a similar process.  Instead of putting stuff in they are taking fluid out- gives you a wicked headache afterwards.  The diagnosis was a definitive MS.  The doctor wanted me to get on a disease modifying drug to treat my newly discovered disease.

The next morning Tony again stayed home to care for me and the boys, he also made phone calls to his mom in Manchester IA and my dad in West Bend WI.  The news was met with mixed feelings of denial and disbelief.  It was a lot to take in for everyone. Between the things the doctor said and all of the informational booklets about this disease I started to feel overwhelmed…and scared.

The drug treatments turned into a couple of month ordeal.  A nurse practitioner would come to the house and teach me and my husband on how to do the injections.  She was a wonderful woman who took her time and did her best to make us feel comfortable with the process.  On the third day of the drug Rebif the nurse noticed I was developing a reaction, a bad reaction, my tongue started to swell. She shot me with and EpiPen and called my doctor to let them know I could no longer be on that drug.  So a week later they switch my treatment drug to Copaxone.  I broke out in blistery hives. Same as last time I got shot with and EpiPen to stop the allergic reaction.  It was a few weeks after that that they had me try Betaseron.  Also a no go.

My symptoms progressed during that time. On top of the left arm and leg issues my right leg was starting to go numb from the knee down and the fatigue was unbearable. My neurologist started me on a run of IV steroids followed up with oral ones.  It would be years and a few trips to Mayo Clinic before I would be able to level out. During that time I went from using walkers, wheel chairs and canes interchangeably with periodic bouts of near normalcy with a smattering of steroids in the mix.

Through the days, months and years I ran a gambit of feelings-anger, fear, mourning, depression, detachment and finally acceptance.  Every day is it’s own day.  One day I may be absolutely fine and the next day find my limbs unresponsive.  But I did learn one thing and it is so desperately important…

….you can get through more than you ever thought you could and still see there is beauty and joy even in the little things all around you.

msbutterfly