Greetings & Salutations

It’s been a while. It’s a New Year.

I disappeared. I had to.

Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.

Last I wrote I talked of some health issues.

They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-

I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.

- 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.

- His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.

-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.

Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.

Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.

I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.

After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.

-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.

Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.

- I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.

Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.

Another day…Another Time.

For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.

Leave a comment

Filed under MS

Human on The Inside

I couldn’t write.

I would sit down and try to create something and then suddenly…my fingers stopped. My brain stopped. Whatever I was writing just didn’t make sense.

This happened several times over the last two months. I would sit in front of the computer, or my ipad, and try to come up with something witty, funny, interesting. I would go to work. It would work for maybe about five lines and suddenly, there was nothing.

The last two months have been an up and down of emotions and experiences that I suppose I couldn’t write about them. My views, my ideas, what I wanted to say changed every other day. Sometime they lasted several days. Some emotions lasted longer than I wanted them to.

September was evil. Sure it included our birthdays(mine & the husband’s- a day apart much to the joy of our daughter). However it also included one of the worst depressions or funks I had ever sunk into in history. I can’t even explain WHY it happened. The kids were back in school and usually at this time of year my energy level surges. The opposite of what it usually does in summer. However, I just couldn’t move. Day after day I would take 7 to school and I would come home and just sit on the couch. Usually reading. Or catching up on something I wanted to watch( I became extremely addicted to the show Haven via Netflix. All I have to say is WHY didn’t I start this show earlier!!).

I didn’t want to leave the house. Or shower( I did, I just didn’t want to). I did still manage to pay the bills, grocery shop, help my children with their homework or whatever emotional upheavals they were going through. Nothing here suffered.

Only me. I couldn’t recognize who I was and I pushed everyone away.

The prior months saw the beginning of what has now become my biggest downfall.

A few months ago I wrote about the issues with my eyes. The accident. My fears. My attempts with the medication.

I’ve never been able to talk about my health issues until the last couple of years. For years I swept them under the rug. In fact I pretended they didn’t exist. Yet, now they’re showing their marks in ways that I can no longer ignore them. And for me that’s been heartbreaking. It makes you feel like less then a person when what ails you defines you.

I’m fighting this in more ways then you can imagine.

The pain and exhaustion have kicked in.

The sleeplessness.

The anger. The depression. The anxiety. The feeling of “what did I do to deserve this?”. It’s a constant cycle of wondering.

My eyes aren’t getting better. In fact the other day I may have made a breakthrough into what I think is going on with them. I should know better to self-diagnose but in this case I think I really did nail it. All I know is that when I’m tired or upset my eyes shut down. The muscles droop, they shut down, I get spots and I can neither see nor move. Let alone drive.

And it all came to a denouement with a visit to an attorney.

See, this is hard to admit, no one wants to admit this. Because it makes you feel so much less as a person. Especially an intelligent one. But, my cognitive functions are slipping rapidly. I’ve been noticing it for a while but lately it’s becoming so pronounced I’m scared. And angry. And I cry a whole hell of a lot.

I was the reader. The early reader. The kid who managed to teach themselves how to read when they were 3 because they were jealous their siblings were going to school. I won spelling bees all through elementary school & even junior high. Well second place, I was in sixth grade and the winner was in seventh grade. We beat the eighth graders. So that was a big deal. My reading skills were always several grades ahead of where they should be because I was addicted to words. I still am.

However, with these issues they don’t make sense as they used to. Imagine reading a book and instead of being able to fly through it in a few days it takes you weeks. Why? Because your brain can’t compute the words. You can’t understand, you re-read the same sentences over and over. In fact really intense literature(something you once enjoyed) is no longer something you can handle. It literally makes your brain hurt. You keep trying though. And when you can’t, you feel like a failure. And you cry.

This has been my life the past year. Especially the past few months.

Writing? No. So many thoughts and ideas that should have been given a chance lay deep within my mind. I wish I could continue but I fear the worst.

My dream as a child? To be a writer. It has never left me. This is where I gave it that shot.

I have so many half-written stories it’s ridiculous.

Recently I found a book of poems. Poems that I had written in high school. Some were honestly pretty damn good. Dark, but good. I realized I’ve always been that girl, just in so many different incarnations based on where I should be and what society wanted me to be.

Back to the eyes.

I don’t think they’ll ever be the same. I have days where they droop on one end. Or one sees spots or double vision. It happens whenever I’m upset or stressed, or fatigued. It terrifies me. My biggest fear about this illness coming true. I’ve always been afraid of losing my sight. And with this, I don’t know how soon it may truly happen. And there’s no way of telling people, people close to me- that one day I may not see them. That I may not see my husband or especially my children.

It’s been so many years. I know I’ve been lucky according to the doctor. Symptoms including diagnosis it’s been 23 years before the progression. But at this point I wish it had been the lack of usage of a hand or foot. Not my eyes.

I’m in the midst of fighting for disability. People can look at this and say “well she can write”. Sure, however it’s taken me 2 months to do so. And I’m sad and angry about it. I can’t be who or what I was before these last few months. Life is no longer what it seems to be.

I don’t have any great message in all of this.

I just know that I’m trying to get through this the best I can.

And hopefully once I can get past the next few months of recouping medical records(of which there are many) and dealing with my normal day to day, I can get back to writing.

In a few weeks after some dastardly dental issues are taken care of I should be back on the low dose of the Tecfidera. For a VERY long time.

Until then…my opinions are many. And will resurface hopefully in some way or another here some day.

1 Comment

Filed under Uncategorized

When it Began

This is the beginning. I mentioned a book I was writing my last post. There are two. One is fiction. One is memoir.

This is the first chapter of the memoir. It’s a little rough, so please forgive me. But I like it. Especially the first half.

————————–
September 25th, 1970

A small, screaming baby arrived as fast as she possibly could. There was no waiting, no intense pushing. She wanted the hell out.

It was nine months to the day of Christmas Day. In which the story told is that that this baby was conceived that night by her parents who were under an immense amount of strain and wine. Their 3 yr old daughter had been sick with a virus and the concern was beyond overwhelming. That night they created this shiny and fast moving human being.

This was me.

My mother always told me that I arrived in a hurry. I had places to go and people to see. That the Doctor had to keep me from falling off the birthing table I was in such a hurry.

I was the third child born to Dorothy and Richard. They were childhood sweethearts on the south side of Chicago. He was four years older than her yet they had known each other for most of their lives, Richard had even briefly dated Dorothy’s older sister Mary.

Dorothy was dark Irish with shining eyes and the hopes of one day becoming a veterinarian. She and Dick had become engaged when she was 15. He was just graduating high school and hoping to go on to a career in business. She lived with her parents and younger sister in their small bungalow. By this time her older sisters Patty and Mary had married. As had her older brother James. Her and Jimmy were the ones that shared the closest genetics. They took after their father’s French/Irish side while their fair haired/ blue eyed sisters all took after their German mother. Their father was a policeman who eventually went on to own a very popular tavern on the south side called Flaherty’s. The mascot of the bar was a 6 foot snake that often slept in the basement of their home.

Dick in the meantime grew up from her just a few blocks over. His father was a fireman who passed away two years before I was born.

Upon my birth there seemed to be a problem with coming up with a name for me. My grandmother Dorothy(my maternal grandmother) wanted to name me Susan. My mother wanted to name me Jennifer and my father wanted to name Winifred. Now considering this was 1970 both Jennifer and Susan were crazy, popular names. My mother won this war.

Looking back I would have taken my father’s choice just due to the fact that now I could have at least had an inventive nickname.

Trying to give me a first name proved so exhausting for my parents that they skipped over that whole middle name thing.

Which at the time was fine, for a defining moment in my life came when I was 13 and watching the Live Aid concert in my father’s living room, I turned to him and decided that my middle name was to be Cristiane. The French version of Christine. At that time my parents were telling me that I could decide on my own middle name, as I truly felt like a fish out of water, as all my friends had really awesome ones like “Marie” and “Cecile” and “Catherine”. I was just plain “Jennifer”.

Although I wasn’t always just plain Jennifer.

I was the third of four kids. Before me came Richard and then Carolyn. When I was five Christian arrived. He damn near killed our mother. She spent several days in the hospital after his birth and I have these odd recollections of my father crying, trying to be strong for us knowing that my mother damn near bled to death giving birth to Chris. I instantly was pissed off by this little interloper who almost took her away from me.

My mother and I have always had an intense bond. It probably began the day I stood up in my crib and screamed. I was just a little past one at this point. And as it has been recounted to me it goes as follows:

I stood up and screamed. My mother came in, in time to see me put my hands over my ears and my eyes to roll back into my head. I fell backwards.
My parents took me to the emergency room. I was diagnosed with possible seizures. These graduated over time to psychomotor seizures. They became repetitive. They came on in force during times that I was experiencing colds or other illnesses.

A particular story my mother told me about occurred during one of my frequent hospital stays at Children’s memorial in Chicago.

It happened when I was about five years old.

I was having another one of my episodes. Which is what we used to call them. Mainly because not everyone knew when I was having a seizure. One of the oddness of a psychomotor seizure is that while my world is being turned upside down, very few would know something was wrong. With a psychomotor seizure the patient could come across very normal but removed from the picture. I would become very vague, almost as if I was daydreaming. But inside my head it was a completely different story. My neurons were misfiring at a rapid fire rate.

There were strange triggers for my seizures that went beyond the cold and flu. Often if words were spoken very slow or very fast it could trigger one. Lights that blinked too fast.
I would have these visions of a ladybug on a slow moving log or someone coming at me as if in a fast moving dream.

They were disturbing and having to recount them to dr’s was equally as petrifying. The dr’s had brought in several interns to observe. And a couple of the interns decided to diagnose me as Schizophrenic. Now this couldn’t have been as far from the truth of the situation going on. My mother was beside herself and became very angry with these people.

Which now that I’m a parent I understand her vigor in defense of my condition.

As the years went on the seizures never tempered themselves. Couple this with inner ear problems and you have a childhood that was less than ideal.

I spent so much time within the hospitals that I my only recourse was to learn how to read.
There are always stories circulating that those with seizure disorders are more prone to early learning and special abilities that transcend the normal.

At a young age my parents knew I was one of them.

When I was three I was bound and determined to learn how to read. Both of my older siblings were in school and I wanted to go with them as well. So I taught myself how to read.

According to my mother it happened very naturally. I also had the inane ability to understand people, to read into their thoughts just by being in the room with them. I was called Hypersensitive. It was so powerful that as I grew older there were times that all the sounds and feelings from all the kids within a classroom would overwhelm me and I’d run out of the room crying.

I had a hard time keeping friends. I had no problem making them. From the outside I was like every other little girl out there, it was just that on the inside my brain was fighting against me.

I made the best of it and retreated to my books & the stories I made up when things were tough. As often as I look back and see how alone I felt during those formative years I know now that I wasn’t. I had days & perhaps weeks, but for the most part there were those who did seem to get me.

Although it was when I hit my teen years I really came into who I was and when I met people who understood what I was going through.

The seizures abated when I was in my mid teens. In fact I took myself off the medication by the time I was 14. I was done with the monthly blood tests. I was done with feeling like a freakshow. Which was honestly how I felt back in the early 80′s.

They stopped. Not completely though. There were a few rare occurrences with them in my early 20′s. After that I never felt them.

Only as time had proven, this was only the beginning of my neurological issues.

Leave a comment

Filed under Uncategorized

Time to Breathe

I realized I haven’t written anything in the last few weeks aside from that very personal story that took me years to come clean with.

This summer has been one full of surprises, resolutions, and heartbreak. It’s also been full of bugs. Well not the ones I usually write about.

The beginning of summer started off with me starting the Tecfidera. Then just as abruptly as starting it I ended up stopping it. It took me so long to agree to taking meds again that this abrupt discontinuation of it felt like once again I was failing. Or rather that I was giving up too soon. So many others I knew were continuing on, soldiering on despite the myriad of troubling side effects.
At times I questioned whether they were setting themselves up for serious fail, whether dealing with some of these side effects(especially the more intensive ones) was a smart thing to do. I can’t speak for them, I know some who have had to give it up, and others who keep plugging along. And I admire and love them all.

However I know how I react. Again, it’s that paradoxic reaction I spoke about before. I am hesitant to go back on the Tec. I have read a few accounts by more and more new patients who state that their doctors are starting them on much lower titration schedules then the one we were all initially given. I have to applaud these neurologists because I believe that thinking this through and changing the guidelines may help so many down the line.

I must mention, I will try it again. I just plan on starting again at the 120′s but for once a day and for SEVERAL months rather then for just a couple weeks.

Ok, MS meds aside.

Summer has been ok. Annoying mostly. We’ve had the kids birthdays. Of Course. C turned 16!! This kid has grown up so well. Unless you count the times he’s told me I suck & he’s moving in with his dad. Many of his issues he’s seemed to outgrow. There are times I look at him and wonder if the Aspergers symptoms are really there. While he has the social hesitancy with new people, I also know that when he went to the family camp with his dad in Pittsburgh he had a blast & made a lot of friends. So I don’t know what it is out here that holds him back.

Today we had registration for sophomore year. I watched him from a distance and realized he towers over so many of the other boys his age & younger. The school nurse, who I came to know well from school meetings, saw him today and exclaimed how good he looked, and how tall he’s become( 5’10-not from my side). The thing is, he really is a handsome kid, if only he realized that.

I have high hopes for this year. Next week we’re going to Target for him to apply for a job now that he’s 16. Plus he’s thrilled by the idea of making money to feed his video game habit. I just want him out in the world. He’s smart as hell & lately all teenager and nothing more. I admit I will miss him when he goes back to school.

E turned 7 and is more like 16 these days then 7. She definitely knows who she is and what she likes. Some days she rules the roost around here. Well, not really. I put my foot down when she’s getting out of hand but at the same time I want her to explore this confident side of her self. When it’s out of hand I let her know.

Otherwise this summer has been me just trying to get by. We went to Rye, NH for the yearly family vacation with J’s family. We always have this wonderful, food exhaustive, and booze soaked 9 days that takes my liver a week or so to recover from. It’s enjoyable and at times exhausting. Mainly because my kid & her cousins had zero concept of time and would wake all the adults up at crazy early times in the morning. Eventually I started locking our door when E left to find her cousins. Then I slept in until 10 if I had the chance. Because at home it sure as hell wasn’t going to happen.

Since home I’ve had spider infestations, reconnections with a sibling, and reconnections with friends I thought lost for good. It’s made me happy. Well, not the spider part. That wouldn’t make anyone happy. Unless you were a shut in.

I’m a very melancholy person. I appreciate everyone(almost everyone) who has ever come through my life in positive ways over the years. And lately there have been people I’ve felt the need to reconnect with and make amends to.

There were some I were close to that I don’t know why I lost touch with in the first place other then stupidity and being a kid. In the past year a couple of them have come trickling back into my life & it’s made me immensely happy.

I don’t say goodbye and forget about people for forever. I don’t know what that says about me. I just know everyone comes into your life for a reason, and some aren’t meant to be lost.

This coming school year, I plan on taking time to figure things out for me. I plan on working on the two novels I have going. Both are complex, and they took a backseat to the craziness of the last few months. My goal is to finish at least one of them in the next six months.

Music is once again at the forefront of my being. I let it lay dormant for so long. This obsession of mine. For so many years it defined me. It brought J & I together. And I let it dissipate. But not anymore. I’m trying to remember what songs & bands I loved and why. I was introduced to a band recently that rocked my world making me wonder why I didn’t know who they were before. Then I remembered my funk.

This year will be different. New connections. New starts. Positive thinking. And New Starts with old friends. And resolutions with people that were a long time coming.

Leave a comment

Filed under Uncategorized

The Official Story

This is my story. I won’t give names. I just want people and women to know that moving on can happen. It’s painful but you can do it. It may take you a while. Sometimes years. But you can do it. This happened to me when I was 23. I’ve sat on this story for years. Never published it openly, but I’ve given it to so many different people.

But tonight there are women who want to give up their voices because of threats. And I say, never give those voices up. We should never be silent, because silence gets us nowhere. Silence puts so many beautiful voices in graves that should never exist.

I’ve decided to go forward with a story that I haven’t kept silent but one that I’ve kept from going wide for the majority of 20 years. For some reason tonight I refuse to keep silent.
This is what I went through. This is my fight. What I felt had to happen.
————————————————————————–

I wasn’t sure what time it was, I just felt the heaviness on top of me. Suddenly I felt someone’s knees pushing into my legs. I didn’t want to open my eyes because I was fearing the worst. Those suspicions were confirmed once I did finally open them.
He was on top of me. He was trying to pull my pants down and he was crying a little. However these were tears of anger not tears of sadness. I tried to scream but he put his hands over my mouth and told me to keep quiet.

I struggled a bit more and he sat up and pinned my arms back with one hand. He was extremely strong, from years of working in the construction business. His right hand had dangled down to the side of the bed and I didn’t know why. It was then that he spoke and told me how sorry it had come to this, but I had betrayed him. He went on to speak the most chilling words I would ever hear “Underneath this mattress is a gun, if you scream or try to hit me I will use it”. My blood ran cold and I sobbed harder and deeper.
He went on to tell me of all the ways I had hurt him. I wanted to shake my head no, I wanted to fight him back with words and tell him of all the ways over the years he had been the one to hurt me. But the fear that he would pull out that gun kept me from saying much of anything but “please, no” over and over. Quietly.
This wasn’t a stranger. This wasn’t someone who had broken into my apartment. This was someone I once cared about and at one point loved. We lived together for over two years and the past several months things had come to a natural standstill. I had outgrown him and I had also become wise to the fact that the relationship was no longer healthy. So we ended things. However neither of us had the money to move out or get our own places. He had a friend who wanted to move in, sleep on the couch and pay rent. He wanted me to leave. Which was fine. I needed to go, I needed to go somewhere where my life would be better. My mother had already made it clear to me that I couldn’t move back home. I was 23 with a G.E.D, and no college years to boast of. Instead I had no drivers license, a decent amount of retail management behind me and an overwhelming desire to learn everything I could. People always referred to me as “book smart”.

In the month leading up to this night J had started hanging out with an even worse crowd than normal. One of the problems with this is how much cocaine he had begun to do. In the past, in the good days, there would be parties at our place.

The days leading up to this night/morning he had been on a non-stop coke binge with two of his friends. I would estimate they had been partying for up to three days straight. That day my mother and I went to look at a few apartment/condo buildings that would be fantastic options for me to move into. My father was in construction/development and my mother in real estate. Between the two of them they were trying to help me find a good place to live. We had spent the day looking at these places and had narrowed it down to two. My father had agreed to loan the money to me to move in. I worked for him so he knew I would have a way to work it off and pay the rent.
I was happy because I felt that things were finally looking up. My mother took me to lunch before she dropped me off at home. She told me at one point that something had been nagging at her all day. She had a bad feeling that I shouldn’t go back to the apartment and she wanted me to come stay the night with her. I told her that yes he was around there and sure he was partying a bit but I wasn’t going to leave my cats(who I loved more than anything) and that everything would be ok I would see her in the morning to make the decision and deposit on a place.

She dropped me off with much hesitation and we said goodbye.

This was one of those times I now wish I had listened to my mother.

The rest of the night was normal. He hung out with his friends and I spent the night in the bedroom watching TV and talking on the phone to friends. I had the bedroom and he had the couches in the other room.

I don’t know how or when it went wrong. I just know that when I woke up with him on top of me I knew that my life wouldn’t be the same.

While I laid there crying and begging him to stop he kept me pinned down as he cried and yelled about how he once loved me. How he was sorry he had hurt me before. But that I deserved it for being a bitch.

The pleading on my part and the rage on his part went on for another hour or so until he seemed to wear down a little. He no longer had his hand dangling to the side of the bed where the gun was supposedly hiding.

It came to a point where I was able to talk him into letting me go. Shakily I stood up. I was in a long t-shirt and a pair of leggings. I slipped on my sandals and grabbed my purse, which contained the paycheck I had cashed the day before. I grabbed my keys and ran out of the door as fast I could.
Our apartment was in Lagrange. A town I knew well. I grew up in the town next door and Lagrange was where I spent much of my youth hanging out with friends.
We lived one block in of a very busy street. Our landlord and her family lived on the floor above us. On the corner, behind us, was the 7-11. I made my way there. I went in and made change to use the phone. My hands shook. I stood outside and put the coins in the payphone, the whole time eyeing the back of the apartment building hoping and praying that he wasn’t coming after me.

I dialed my father’s number. He lived not more than 8 minutes from me. I talked to him and could barely choke out the words of what had happened. I then noticed the time. It was about 6:30 in the morning. There was a burly looking gentleman standing a couple feet to my right smoking a cigarette. He looked at me and I knew then that he overheard my conversation with my father.

Until my father arrived no words needed to be spoken, he stayed near me until I was safe. Making sure no more harm would come to me. When my father arrived all I did was nod my head and shakily mouth the word “thanks”. He looked at me and nodded back. To this day I wish I knew who that man was for what he did that early morning. For that girl on that corner scared for her life. This is one of those instances where I believe there really are guardian angels out there.

My father took me to his house where my stepmother was awake and she greeted me with a hug. I sat in their kitchen borrowing a cigarette from her and smoking it as I relayed a little of what had just happened. Talking to them I told them I had to report this to the police.
I called them and let them know where I was and what had happened. They told me to come into the station immediately. Before I was to leave, something came over me and to this day I still don’t know what or why I did it- I called his parents. I told his mother what her oldest son had done to me and why. I told her I was going to the police.

My father took me to the police station where they brought me in and took my story. I sat there for nearly an hour and a half telling them in detail exactly what had happened, what the nature of our relationship was. They then had my father take me to Lagrange hospital to go through the most painful part of the whole day-the rape examination. It was there the words really resonated with me.

I was raped. There was no going back from this. I spent that morning wondering “why me?” Why did this happen to me? What did I do wrong? What did I do to deserve this?

The nurse who was on my case just happened to be an old neighborhood friend of our family’s. My father breathed a sigh of relief upon seeing her. We hadn’t seen her in years but her and her daughters had always been kind to me when I was young, and he knew she would treat me with care. They did the physical exam of checking me for bruises and swabbing all areas of my body for samples of his fluids. They gave me several medications to take to prevent any type of STD I might perhaps get.

After the examination I was sent back to the police station where I waited cold and shivering in a room for the Assistant District Attorney.

He arrived, a tall, younger man, perhaps in his early 30′s. He opened his briefcase and introduced himself. He asked me to again go through exactly what had happened. I did. I repeated everything I had given to the police hours earlier. Afterwards he closed his folder and told me that they arrested J. They brought him in.
However when they arrived at the apartment they knew he was awaiting them and he had been caught in the act of flushing the cocaine he had been taking down the toilet. It was gone. But the very act showed that he knew he was guilty of something. The. D.A. asked me how it was he could have known and I explained how one of my acts of anger was to tell his mother, his mother who thought that he was perfect, what a messed up person he was and what he had done. She had tipped him off that I was going to the police.
I started to cry because I sat there thinking that my case was sunk.

However the words he then delivered startled me out of that doom: He told me that they brought him in and he gave a 12 page confession verbatim to what I had told them.
The A.D.A told me then and there that I had one of the strongest cases of domestic rape that Cook County of Illinois had ever seen. This was 1994, and this was extremely rare.
I was sadly overjoyed.

I didn’t know what to do. I went back to the apartment and grabbed some clothes. My best friend E told me to come to her house, the one she shared with her parents. I went and spent the night with her and alternated between sleeping hard and barely sleeping.

The pills that the hospital had given me were wrecking my stomach.

The next morning I received a call from the detective on my case, he informed me that the landlords are making me vacate the apartment. I cried and screamed, I told them that wasn’t fair as I was the one who was made to suffer. Yes he was out on bail and at his parents, but why was I to be the one to leave right away? He was the criminal! They explained to me that my name was never on the lease therefore I had to go.

At this point I was feeling positively nauseous. Not from the news, no, the medications they gave me were making me sick. I packed up a couple bags of my things. Some books, cd’s, my cosmetics & toiletries. I grabbed the cats. My cats. They were definitely mine, not his. They loved me best, they always had. I packed up their food and toys.
This detective was taking me to my mother’s who lived 30 minutes west. He helped me pack my things into his car. He helped bring my two cats into his car.

For half of the 30 minutes to my mom’s my cats climbed upon the dashboard and climbed all over the seats. The other half was spent with him periodically pulling over somewhere so I could vomit up the drugs that the hospital had given me to prevent the STD’s .

He dropped me off and the next two days were me trying to sleep and go back to some sort of normal. My mother’s relationship with her husband was already strained so my moving in did not help. She already had taken my two parakeets by this point, now she has me and my two cats.

She helped me get settled the best way she can. She was kind enough not to ever say ” I told you so” but there was a disturbed part of me that always felt that she was thinking it.

The next few weeks were spent with me working with a rape counselor and the A.D.A. We had an ironclad case against J. There was nowhere we could go wrong.

By late summer I had met someone. He knew of what had happened and he stood by me and even attended a court hearing.

The first time I had to face him in court I remember stressing at home over what would be appropriate to wear. I know how silly that sounds but being a victim of rape sadly means that you have to portray yourself as innocently as possible in front of the judge and (possible) jury.
I remember walking into the courtroom with my mother, my friend M, and my new boyfriend B(later my first husband).
I sat in the courtroom and listened to the opening statements by both sides. Eventually in this very small courtroom with only a judge presiding, no jury, they called me to the stand. The District Attorney on my behalf called me up to give my statements. By this point J had decided to plead not guilty. Despite having signed the 12 page confession on what had taken place that night.
They asked me to give the basics about what had occurred. They later went in to what the extent of our relationship was. I explained that we had lived together for nearly two years in a relationship until it had soured. We remained in the apartment together for financial reasons until I was able to move out. Which I was close to doing when everything had occurred.

I told them of the instances in which I first saw his dangerous side. I was young and in a position of feeling that I couldn’t get out when these things were going down. At the time I had moved in with him I was pregnant. We had barely been together 6 weeks when I found myself expecting. My mother was furious and made me leave. Granted there were other dynamics behind our situation which made her kick me out, let’s call it a strong misunderstanding.
J and I had rented an apartment in LaGrange. Close to so many friends. Close to his family.

I barely knew him but he was charming and I wasn’t very good at judging men at the time.
We moved in to this small and affordable one bedroom apartment and tried to prepare for what was to happen next. However within a couple weeks everything went south. My body seemed to be rejecting this life inside it. I couldn’t keep any food or liquid, not even water, inside of me. I couldn’t stay hydrated. Eventually I ended up in the emergency room being hooked up to I.V.’s. The doctors weren’t sure what to tell me. I was young. I was 22. My life had been full of one trauma after another.

I didn’t think that I could go through with this. With having this child. I loved that it was my child. But I didn’t think that I could carry a child, care for it and be their mother. And the pain. The pain in my stomach was extraordinary.

Not many words had to be spoken after this. I think we all knew what needed to happen. And by all I meant him, myself and my mother, who by that point was involved in this.
I sunk into the bed we shared when we got home from the hospital and cried myself to sleep with my arms held tightly across myself.
After that things slowly deteriorated.

One incident that stood out happened several weeks later. It was mid October. We were at a bar with some friends, including one of my oldest friends.
We were having a good time until J ran into some girl he knew that was friends with his best friend’s sister. Apparently somewhere off to the side she had said some rather unsavory (and untrue) things about me.

A week prior he had taken me to a house that several guys I knew shared. I had been friends with many of them for a couple years by this point. One of them I had had a briefly dated months prior. He had lent me a book and asked for it back. J had driven me one night to deliver it to him. I was there for maybe 8 minutes. J sat in the car in the driveway, his choice. The girl from the bar just happens to be this guy’s new girlfriend. She was there the night we stopped by. A couple of this man’s housemates were also there.

We spoke for a few minutes on his inside stairwell, I handed him the book and that was it. I had left.
However apparently this girl had told J that her boyfriend and I slept together that night. Which made absolutely zero sense since J and I were living together and he drove me there. He knew how long I was in that house. However his ability to put logical thoughts together seemed to be escaping him.
So this night in the bar he immediately started in on me in front of everyone. I flinched. Everyone else sat there in silence. No one knew what to do with what was happening.
Things however quickly spiraled when he took a cigarette. A lit cigarette. And put it out in his hand, in front of my face. He was angry with me and trying to teach me some kind of lesson. My friends told me not to leave with him.

But I felt as if I had nowhere to go. This was the age before cell phones, it wasn’t as if I could call my parents who were a bit further away from me to come and take me home with them.

Why did I feel so trapped within this relationship? This is a question I still ask myself to this day.
I made the mistake of leaving with him.

He was drunk and angry. Erroneously believing some trashy young girl who was jealous of me.
We drove back to our place and he drove erratically the whole way back, yelling in my face that I had slept with this guy. Which I kept saying to him over and over sounded one hundred percent irrational considering how long I was in the house.
This still wasn’t getting through to him. He tried to kill us both by driving up sidewalks and nearly taking down a mailbox.

A few days later his way of trying to make it all up to me was to take me to New Orleans via a cross country road trip. He knew that going there had always been a dream of mine. We just happened to be arriving the weekend of Halloween. And I have to admit we had an amazing time while there. He let me drag him all around to places I had only read about.
When we returned things were actually fairly decent for a while.

He was controlling in ways I should have been more in tune to. He had an extreme jealous streak that I always had to watch out for.
I hate to say but many of the details of what went on over the next year are a bit hazy as it was so long ago.

There were times when he would push me into walls and down on the bed and scream and yell. Tell me how horrible I was.
I briefly went home to my mother for a few weeks but then went back when the dust settled and he cried and cried with his apologies.
But sitting here now, in this courtroom, in this chair next to the judge giving my testimony was something completely different. I had to bare my soul for everyone and dissect what exactly went on in our relationship. The good and the bad.

I remember that during the first part of the questioning they kept trying to rattle me about our relationship. I sat back not moving forward in the chair because I was afraid for him to see me.

I tried to avoid him during these procedures as much as possible.

One of the particularly aggravating cross-examinations was when they pulled up a birthday card where I wrote how I loved him. They questioned how it was that I could write these kinds of things, feel these kinds of things and yet still go through with punishing him in this courtroom.

It was then that something snapped within me. The fear seemed to vanquish and I found myself sitting forward finally. So he could see me. And I answered the attorney.

I told him the following ” Once upon a time we did love each other. I did love him. I trusted him. When I wrote that I loved him. But time and time again he proved that his version of love was to try and control me, and when he felt he couldn’t control me he hurt me. Only I was too foolish and weak to get away from him. And that’s why I’m sitting here today. Having been hurt and put through more than anyone should ever have to go through. “

All I know is that my attorney sitting off to the right looked at me and smiled really big. He knew that what I did was one of the best things I could have done for my case.
The opposing attorney continued to try and rattle me in the courts. I had won the first round.
Because we were still in a precarious position with a domestic rape trial I wasn’t brimming with confidence. The guilty verdict was this particular judge but it meant there would be another round of questioning and waiting for another verdict.
I went through another round of questioning a couple weeks later.

A few weeks after that something happened to me that would affect me physically for the rest of my life and changed the course of how I looked at life forever. I Was diagnosed with MS.

It was after this that I decided I couldn’t take anymore. I couldn’t deal with sitting in front of the judge, in front of this man, I wanted him punished but right now I felt like once again I was the one being punished.

The A.D.A. called me one day. Told me I needed to be in court for the decision. I broke down on the phone with him and told him what I had been feeling, the medical diagnosis I had just had that literally just changed the course of my life forever. I cried. I said I couldn’t be there.
He was disappointed with me but told me he understood. He would let me know what was to happen.

He called me the day of the court date. They found him guilty of aggravated assault. His sentencing was to be six months in jail, six months in a rehab facility and I would have a three year restraining order against him.

I broke down crying. I couldn’t be happy. Part of me wanted to be, but there was once a time I loved this man. To be grateful that he’s going to jail felt wrong.
However this feeling that day changed and wavered over time. There were days and months where I wanted him to fry for what he did to me. There were days of forgiveness for I knew that the worst of it all was done under drug abuse.

I moved on. I was with the new boyfriend and I was beyond happy. I had a really great job, I had my family who rallied to my side. Especially my mother.
I stayed away from that particular area, La Grange, for a very long time. It was only when my family’s company was stationed there nearly ten years later did I venture back there. I was working for them at the time and eventually living there. By that time I knew from tracking his info online that he was out of state.

It was only recently that I found out that he was back in Illinois. He was living in a town very close to where I was four years ago, before I moved where I was currently.
The thing was, instead of feeling fear, I felt something else. Something I wasn’t sure I would ever bring myself to feel. It was forgiveness.

I can’t hate him anymore for what happened. I feel a bit of anger still, but for my own good I realized I had to make peace. I had to look within myself and the years that have passed and the price that he paid for what he did and forgive him.
Do I ever want to see him again? No, no I don’t want to. I purposely avoid the area which he lives now because I don’t want to run the risk of seeing him again. I don’t honestly think that despite my forgiveness I could handle it.

So for now, I’m going to keep moving on.

3 Comments

Filed under Uncategorized

And in the End…

Last I wrote I had begun the medication and aside from the basic side effect of flushing & the fatigue which led to my dosage being lowered with the initial titration I was fine.
Then things changed swiftly. The first two days of the 240 dosage I was prepared for the worst, but it never occurred. The day after the first day was my daughter’s birthday party with her friends and we were taking the girls to a movie. It was within an hour of leaving the house that the first symptoms appeared. I felt nauseous & had to take a bag of animal crackers with me to keep myself from throwing up in the theater with five girls in tow. I made it through the movie and the rest of the party. However not long after everyone left I was curled up on the couch in the fetal position in pain. Later that night it passed and I made a point of going to bed earlier than normal so I could feel human.
Which the next day I did.

However that night I took my third 240. And within 2 hours something didn’t feel right. At first I blamed it on the really bad sangria I was drinking, which I had only had three sips of. However as things progressed, the night became worse. I couldn’t sleep, my stomach was in agony. My back was seizing. I spent the night feeling like hell, I didn’t sleep except for 45 minutes close to the time I needed to be up to get my daughter up for camp. I was hurting in a way I never felt before. The exhaustion was something I couldn’t deal with. I came home from dropping her off and fell asleep. But the pain woke me up again a short time later and at that point I called the doctor. I reached a nurse who after consulting the doctor called me back telling me that I needed to stop the Tecfidera immediately.

Now this is the first medication I had been on since my aborted attempts with the Avonex over 9 years ago. I had to go on this mainly because my eyesight has been the main failure with the MS after 25 of having it. I sometimes feel awful because I’m fully functional compared to so many of my peers. Sure I have moments, weeks even when I don’t think as well, or function as well as I should. But I know that I can run the trail with my dog or clean my house with abandon. And I feel guilty. I see and read the stories of those who can’t do half the things I can and I feel miserable.

However I spent so many years fighting this ridiculous illness and doing what I wanted because I knew that there would come a day that if I ever stopped fighting I would be succumbing to its hellish consequences. However since these initial feelings I’ve become connected with a community that has people who have progressed much further past what I could have ever thought. They feel the pain and limitation that I don’t have yet. And I say yet because there is always that chance. Someday it will, and might come. And probably will.

I knew it was bad that day when I called my husband at 2 pm in ridiculous tears. I couldn’t eat, lay down, sleep, stand up or breathe. He left work within 20 minutes and came home to me & to pick up our daughter from camp. He had never in all the years we were together heard me in this much pain. I couldn’t function. I wanted to soldier on. I knew that the drug was still new. Though it had been through trials it was still new. At least to the general population of MS patients. We’re the guinea pigs for our neurologists. As we go along dealing with this medication they’re learning about it. There are always certain side effects that are given however, this doesn’t cover the whole spectrum. There are always going to be side effects that occur that no one anticipated and others that reached a severity that wasn’t supposed to be documented.

But we’re the documentation.

The initial titration schedule with the Tecfidera goes as follows: 2 120mg a day for a week, after that one graduates to the 2 240 a day schedule. Now this is when things goes haywire for many. There are many that don’t feel the side effects after going through this change. There are quite a few who go through very severe GI side effects that choose to power through them no matter how long and hard they are. For some they last a few weeks, a few months.
There are those of us who look at this as being something that is non-negotiable. For me I spent that last 24 hrs of severe pain on the phone with my Neuro’s partner at 9 pm wondering what to do. He wanted me in the ER hooked up to an IV of a cocktail that would deal with the pain. I told him I had a chance to acquire an Ativan via my mother. Which is an anti-anxiety drug. He said “oh yes. Try that first, it might make the spasms subside. If they don’t, go to the hospital immediately.” By the time I called my mother back she was almost in my driveway. Within an hour of taking the Ativan I felt calmer. I still had the pain for three hrs afterwards. Then I slept for almost 8 hrs straight. And felt better.

The next day I felt a little better. I had more energy than I had the day the day before. My husband decided not to chance things, and called in to work explaining the situation. I left that afternoon to run an errand. That 40 minute errand proved to be the wrong move. A short time later we had to stop by my mother’s, then pick up our daughter from camp. By the time we arrived to my mother’s my insides dancing to that tune. I was in pain again. My mother put an ice pack on me when we arrived and while J went to get our daughter from camp I sat there with it on. By the time he returned back I felt much better. And as that night went on I felt even more so. I took another Attivan a few hours before bedtime. By morning I was a new person. Though by daytime I felt a little loopy. I felt stoned as evidenced by my conversation with my friend Jess. I sat in a parking lot talking to her laughing so hard she laughed. BUT I felt like ME again.

The next day the Dr. was finally back in the office and we talked about what to do. She admitted that what we needed to do was bring the titration schedule down to 1 120 a day for three months. Not everyone was responding well to this medication. It seemed that the schedule was not in tune with everyone’s GI systems. This was evidenced by what I had been seeing on this support group for the medication I was involved with. So many were reporting the same thing.

My family has this bizarre reaction with most medications. Particularly my mother’s side. We have what’s called “paradoxical” reactions. Our systems don’t match up to what we’re ingesting, and though the drug may cause only a few mild side effects it’s not uncommon for most of us to end up with the most extreme reaction on the first try. I’ve seen this happen with my mother, my brother, my aunt, and myself.

I can’t take a Tylenol sinus without falling asleep within two hours and staying asleep for nearly 16.

This has caused a conundrum for me when it comes to the caring & treating of this illness. This disease. I don’t know what to call it anymore. It’s just something that has made my life unusual & at times unbearable for well over two decades.
I will give myself a break( I have been this past week) and move on. I will restart the medication at slower dosage in a few weeks. Thankfully my doctor understood that I needed to take time off due to July being so busy.

I need to make clear here and now that not every medication comes with a warning label, and it doesn’t come with a label promising a cure. MS will not be cured. At least not for now. However with the rate things are going, I hope that perhaps some amazing discovery will occur that will lead a slowdown of symptoms and progression for those of us with this strange, and befuddling illness. I would honestly like to see a cure in my lifetime. I would like to prolong the inevitable. I would like to be able to see my children grow up, my grandchildren grow up, and the world evolve even more.

However our skepticism toward the medical industry needs to remain grounded & well fed only when necessary.

When something amazing presents itself, we need to grab onto it and give it a chance.

Leave a comment

Filed under MS

The Simple Story

The adventure has begun. It began ten days ago on a sunday evening.

The little blue and white pills sat in their little black case waiting for me. The deal was that I would take them & they would slow down some of the symptoms and flares that had been taking place for a while. A long while. Way too long.

I stared it down. It didn’t move. It mocked me. I did what all the lovely people on the support group page told me to do. Take the 1 aspirin, eat, wait a little while, then take it with a lot of water. Enough water to keep a camel happy for a year. And I did most of that. Except take the pill part. Instead I stood there putting it in my mouth, taking it out, putting it in, taking it out. I was nervous. Terrified. I knew how much life would change. Then my 6 1/2 yr old piped up and told me to just take it “Do it for your health”. Who can argue with that? So I took it. And waited. For anything & everything. I was nervous so I walked around a bit. Cleaned a little. Then I remembered The Tonys were on and that took some of the worry away from me. Damn, Neil Patrick Harris should host all awards shows from now on. I really hope Tim Minchin wins a boatload of awards for Matilda. These thoughts kept me preoccupied. Then slowly but surely I was getting warmer. I couldn’t figure out what was up. I kept looking at the air conditioning system and adjusting it. Hmm It was 72. Why am I so hot? Took off my t-shirt & threw on a tank top. Husband & I sat down to watch Mad Men.

A short time later I was burning. The skin on my arms and chest were bright red & blotchy. It hurt. It was absolutely horrible, this was a worse feeling then giving birth. Which sounds silly but it was. I kept jumping up and down making these pitiful whining noises. A red rash popped up all over my arms, chest & legs. It hurt to walk. The feeling of fabric against my legs was torture. My husband tried to calm me down but that seemed to make matters worse, as I was in a heightened state. I quickly grabbed a wet towel and applied it everywhere. That seemed to take some of the stinging feeling away. I guzzled 5 glasses of water & took to the boards to the support group for advice. Thankfully the advice was much of what I was doing. Drinking 8 glasses of water seemed to bring it all down. Within an hour the flushing had subsided, however my legs still felt prickly & would remain so through most of the night.

This was my first dose. The next day went fine. Morning & evening went off without a hitch. No side effects. However tuesday morning was a different story. I took the medication & within 2 hrs I could feel something. I was a little dizzy, felt a little tired. More then normal. I was getting ready to take the kids to the local mall. I had promised them, they were excited to go use some gift cards. But within a mile from home I sensed the change. I was dizzier, and my eyes felt like rocks. My body suddenly felt like a paperweight. I could barely stay awake or feel anything. I made it another quarter mile to the local McDonald’s and grabbed food. Pulled over and the kids ate. I started tremoring. My left arm. Always my left arm. I argued with my mother who told me that it would pass. But I was terrified. I took a deep breath and decided to turn around and go home. I made it home and immediately came in and climbed upon the couch. I was tired. Oh so tired. I drank a huge diet coke to try and get some caffeine in my system. It’s not the best choice but I knew it would help me stay awake. Thankfully C is old enough to watch over his sister so I could try and get back to me. I did eventually feel ok. I had a second wind late at night with the night dose.

Which made me wonder if there was something to the way I was taking them. The first dose was a night dose & I had some energy with it. Morning doses seemed to make me a little sleepy, rinse lather & repeat. This went on the next day. And the following day thursday was the worst. I could barely function. It started with an argument with my contractor who basically went back on most of his word regarding fixing a huge issue his former company caused & screamed at me on the phone(my husband is still planning on dealing with him soon for that one). I was shaking. Then a family issue that had been going on was giving me such stress that my mother finally forbid my sister to talk to me about it & said that she wouldn’t talk to me about it either until things settled. I was that much of a mess.

It was by early afternoon when she called to check on me again & I could barely lift my head to the phone, and my words were slurring as if I drank a bottle of whiskey my mom knew something was wrong. She came and picked up E. She had her stay with her until J could pick her up on his way home from work. She even sent my stepfather over with a pizza for me and C. During this time I took to the phone and called my neuro. I told the nurse what was happening and when the Doctor called me back a short time later she said to just take one pill a day at night from here on out. Even when the dosage goes up to the 240. I did as she said and the next day I felt myself. I even made it to the mall with the kids. They had the best day. I even overcame my fear of drinking with this med thanks to some encouragement my by new friends in the group who were experts on the matter, and felt just fine. In fact the pill seems to go down better when an hour later you follow it up with a glass of wine.

This week I’ve been fine with the medication. Which is a far cry from my days with Avonex. I officially apologize to my husband Josh & to my ex/friend Matt for everything I put them through when they had to administer that bitch of a drug to me, and the anger I exploded with days following due to the horrendous side effects. I wish this pill had been around back then. Thankfully Josh , unless the 240 does a number on me down the line, you’re a very lucky man. Thanks for sticking around through this all. I know I give you options sometimes, but you never take me up on them. I love you for that.

I know I always said I would never go on these drugs. Or at least never give them a chance again. I’ve had some pretty strong things to say about them. And while things are going well with this oral drug, I’m still having reservations. With the rate my eyes are having problems(and for a writer, losing the ability to see is up there with death), I know I had very little choice. It’s been 25 years for me. And I’ve come off lightly compared to so many I’ve come to know and care about. There are just times I don’t want to put my body through the push and pull of the medications. However, if this keeps going the way it has then I’ll keep going. I want to see my kids grow up, and being the tough broad I am, I’m not giving up now. I’m going to stick around for another 40 or so years. That’s my goal. And I don’t give up, or let go, easily.

Before I go, I must say thank you to my new friends from this group. They’ve really helped me through the last two weeks. If it weren’t for them I may have chickened out and not taken the damn pill. Plus I’ve realized it’s nice to know that there are others out there who feel the way I do, and I’m glad to have them as my friends, current and future.

1 Comment

Filed under MS