Breathe Me

I’ve been dealing with the every day pain in stride. The panic attacks are still there, however I’ve started to chart them and I’ve noticed there’s a pattern as to when they occur. And it’s not often. I’ve developed techniques to keep them at bay. It’s a lot of work, dealing with this illness.

I haven’t been to the Doctor in a while. Partially because I don’t know what she can say or do for me at this point. I know where I am, what I’m dealing with. I know what I have to do.

In a couple of weeks I’m going to restart the oral med Tecfidera. Too much has been going on to have started it again. From 17 losing his grandfather & his emotional fallout, to my own depression/panic attacks that had left me feeling as if I could barely leave the house most of summer and the panic attacks that would ensue when I would drive. Thankfully these I have under control. I’ve got it. I think I do, at least.

However, my eyesight is messy. I’ve been putting off scheduling the appointment to find out why the blurry spots are showing up. I know what it is. They told me as much a few months ago. Optic Neuritis.

The lawyer handling my disability case has disappeared. Somewhat. His secretary told me two months ago that the appeal takes a very long time. Well, no contact in two months is too much of a long time. This week I’ll make the effort to contact them.

Oh but hey, the confession. I was going to get to that point.

This past weekend was my 25th HS reunion. I didn’t go. One major reason was that it was the same night as my husband’s birthday. I know him, and I know that he wouldn’t have wanted to spend his night making small talk with people he didn’t know.

Another? I don’t remember a lot of people. And not for the reason you may think.

This is the part that kills me. What so many don’t realize and understand that comes with having MS. Our memory fades in odd ways. For me, there are people that stand out. Those I had the most contact with. Most of these people are those I went to grade school and junior high with. My memories about them remain strong.

If it comes to those who I had just met in High School, I have less of a chance of remembering who they are/were. Some I remember well. Others I know the faces, or perhaps, just the names. It’s frustrating and confusing. I remember bits and pieces.

And after what happened to me at our 20th I couldn’t put myself through it again.

During my freshman year I had the typical experience. That which you learn where you stand. By sophomore year I hung out mostly with the class ahead of me. I knew many in my class, and by junior year I met a few people who I still adore to this day, a couple of which are my best friends to this day. However, I never felt as if I belonged. And trying to go into this reunion at a time when I’m not at a physically strong point seemed like the wrong thing to do. I didn’t want to let myself down.

This is the hard and sad part of having this illness. Little things that we all take for granted, that we expect every day that we go on, they come at a price for some of us. It’s come at a price for me. I wish I could have gone to my reunion, however the chance that I could put face and name together with so many would have been daunting.

My accomplishments the last few years have been few to inferior compared to theirs. I’ve lived within dealing with this illness and trying to raise my children, handling the day to day, that I don’t expect much more. I try to write. I try to be.

I just won’t be who I thought I’d be nearly 30 years ago. And I just won’t try anymore.

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Where you Belong

Humbling.

Frightening. Thought provoking. Terrifying. Laughter. Tears.

These are the thoughts, the emotions that I felt while finally finishing the documentary When I Walk by Jason DaSilva. We started this two months ago when it first aired. Me being myself and my husband J. A small part of me didn’t want him to watch this. I knew how difficult it was going to be for him to see it. Another part of me wanted him to understand what I felt day after day, even though Jason’s diagnosis & experiences were more severe than what I’ve dealt with over the 20 something years of my diagnosis.

It was too much for me at the time. There was so much more going on. So I set it aside.

It was time to finish it. I knew it would be painful to watch. I wanted to reach into the screen and hug both Jason AND Alice. Alice stood out for me for her selflessness, for her deep devotion to him even though he was already deep into the physical and mental symptoms that MS can cause. Sure, she was already familiar with it to an extent because of her mother, but she then went and fell in love with this man who was PPMS which is the extreme on the MS stratosphere and she stood by him. She loved him, took care of him in his darkest times. She married him and lived her life. I worried briefly while watching the documentary that people/caregivers of those with MS would come down upon her for at one time need to be free, to go do what she needed to do, what she had done so often before being with him. I turned to J and told him ” I’m not mad, I understand her. This is why I give you your freedom to do what you need to do. I won’t hold you back”.

It’s painful for those of us with these illnesses that have little hope of improving. Me? I’ve been RRMS since 94(officially) but I had symptoms for nearly 4-5 years before this diagnosis. It’s 20 years officially in a few weeks since I was diagnosed. I always speak of it to others as the date when the symptoms first appeared. It feels right because it’s so hard to diagnose. Or in my case, I had no insurance so I suffered until I was able to finally see doctors without being charged an arm and a leg. Which sounds funny, because now that’s precisely some of the body parts I’ve lost along the way with this illness. Not literally. They’re just hard to move some days.

It’s not formal but I’m fairly certain I’ve entered that stratosphere of SPMS, which is the gradual progression of RRMS. My doctor marveled for so long over how far I had come, especially since I was one of those skeptics who wouldn’t take the medications and who took them very briefly over intervals throughout the years. The side effects hit me so hard I couldn’t function.

Granted after 20+ years I’ve had some serious setbacks. Some physical, now some emotional as the MS does take a toll on you mentally after a while. For me it’s panic attacks. I’m afraid of driving and the circle around me has shrunk. It upsets me on a daily basis since some days when I get in my car to go to the grocery store I’m not sure if it’s going to hit me. I can travel to my daughter’s school and the immediate neighborhood with no problem. But some roads provoke the issues.

I’m exhausted all the time. I hate going up and down stairs. I’m afraid to go running or exercise because my legs feel so weak afterwards. I can’t do a lot during the summer with my kids because the heat becomes unbearable. My vision has become horrible. And like the driving, I have good days and bad days with it.

I’m not going to lie, so many times over the years, especially the last two, I’ve given my husband the option of leaving. I don’t want him to deal with me like this. I don’t want him to be subject to my bad memory, my irritability, or ability to not want to get off the couch for a few days when the heat is unbearable. I feel like a failure during these times. He however, has told me he’s not going anywhere. Some days I’m happy when he says this, there are others I feel guilty. Because I feel he deserves better.

Yet, isn’t that what we who have disabilities, illnesses think and feel often? We have to get past it somehow with our self-esteem already taking this hit, we have to find a way to still love ourselves. I try. I really try. I miss writing. I don’t do it as often and when I don’t it takes me a while to realize how much I’m suffering. But my mind works slower, my thoughts are many, my fingers can’t keep up.

For me, this documentary opened up a lot within me. I’d been avoiding the meds for so long. Rather I’ve had horrible experiences with them and though I’ve had the new drug sitting in my cabinet for three months I’ve yet found the right time to re-start it. The tecfidera.

We decided after watching this documentary tonight that I start October 1st. Especially since I’ll be on the lowest dose possible for a long time. I can’t put this off anymore. I can’t get in my car. My eyes are failing me. The other day as I was sitting here my left thumb started convulsing. Not to mention I just may be having seizures again, of which I had on a regular basis from the time I was a year old until my late teens. There are little signs, signs I’ve called my mother with often trying to figure out if that’s what’s going on.

Lately I’ve felt like the neurological enigma.

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Damage Control

A new day, a new month.

Last month saw loss. Grief. Instability and anger.

My son has been going through the stages of grief at rapid pace, up and down, day to day. Trying to be patient and let him deal with them as they come. This was the worst thing he’s ever had to go through. The first loss. And one so close, one so painful. His grief has been tearing me up because I’m trying to help but there are days I’m not sure if I’m being too easy-going or too tough. I see his dad dealing with it better then he is.

He may be turning 17 in a month, but with his Aspergers he isn’t always able to deal with his emotions the same way someone without it might. Not to mention that he’s also hypersensitive. Something he comes by naturally courtesy of his mother.

I know he fell short with his classes and his finals the last four weeks. I expected nothing more. His father didn’t either. Which makes it complicated because we know that some of his grades are probably not going to be as good as we had hoped, and the two classes he was suffering with the most may possibly result in failing grades(one class it’s been discussed already with the teacher that if it happens he’ll retake it next year). How are you supposed to approach a situation like this when the child’s experienced a hellacious loss within weeks of finals, when they already deal with depression?

I’ll tell you.

You cut them a break. You have to. For their own emotional health and growth and for your own.

Sometimes coming down hard & giving them consequences during really hard times does nothing but compound a situation and possibly propels the child into further depression/anxiety/doubt about their ability and self-worth.

Being a teenager sucks. Add divorce, alienation by peers, bullying, loss, grief, self-doubt, and the never-ending stream of impossibilities set upon the teens of today by the media blasts(social in specific) and it’s complex to try to raise a well-rounded teenager without any issues at all. If you have, I congratulate you, you got lucky. Really lucky, because I’ve yet to come across more than a few without the above.

I grew up in the early-mid 80’s. Or rather I was a teen during those times. My parents divorced when I was 11, my Junior High & HS years were awful off and on. However I found my way, I had my books. I had my writing. I had the theater(secret: I was in plays). Sure, I didn’t always like how I looked but I look back on those pictures and laugh now. I appreciate myself as a teenager now as a 40 something more than I could ever before. I didn’t have facebook, twitter and instagram telling me I was ugly or dressed wrong. I was punk rock. In High School my go to by junior year was a leather jacket and ripped stockings, and knee high black boots. I found solace with the other kids who didn’t feel as if they fit in, but at times we didn’t even always fit in with each other. However it worked. And I forgot my pains.

Sometimes I feel it’s kids like my son, those who straddle that in between, of feeling as if they don’t fit in anywhere and wanting to fit in everywhere that have it the worst. I want people to love him the way that I do, who understand him the way that I do. I want him to find his way eventually. Next fall he’s a junior and while he has friends in school and a couple of kids he texts without outside of, I want him to find out who HE is. He has to.

Because he’s worth it. Because he needs to be someone. He already is someone but he has to believe in himself. And for now the only way to help him in this is to let go a little of my expectations and let him develop his own.

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The Last Goodbye

For years you know people, you meet them and some of them make a mark upon you that you can’t explain.

Sometimes you grow apart, which is only natural. However, they’re still there in your life one way or another and what you felt about them is not something you can easily let go of.

The past three years my son’s grandfather fought a very valiant fight against cancer. He was strong and endured the chemo, everything the doctors threw at him. He was 6’4 and strong. However over time he weakened and parts of his jaw and body suffered along the way.

He kept going, and going.

I know many never understand this, but my son’s father and I never hated each other. It was quite the opposite. In the 13 years we’ve been divorced we’ve always been there for each other. Sure we both remarried the same year and had kids a short time later with those spouses, but we stayed friends. At one point we both lived less than two blocks from one another. We did this for our kid. His wife and I would babysit for the other’s kids. His wife and I would go to movies together. We liked each other. It was just natural.

Eventually we moved further away from them, yet closer to where 16’s father grew up. Where 16’s grandparents lived & where his father worked. Weekends and weeknights worked. Over the years from the time he was a baby we spent so much time with the ex’s parents that our son saw his grandfather as a second father. Every tuesday night he would spend the night there with his dad.

Then.

The day came several weeks ago when B’s wife called me to tell me how they didn’t think it was long. My ex FIL was in hospice.At home, but still.

Four weeks later upon picking up 16 for the night B took me outside to talk. He told me it was maybe a week. Maybe two. It was that severe. After he left I poured a glass of wine and cried. For his father. A great guy who loved my son. Who always treated me well all these years. For my son, who adored his grandfather something fierce.

A few days later they brought all of the family members in from Wisconsin. They said their last goodbyes. This was a close family. My son was so torn up his stepmother brought him back to me that night.

Days later I knew it was coming. His dad and grandmother didn’t want him there. But I pushed. His stepmother and I both knew it was either he said goodbye that day or else. We were right. His step-mother pushed. He went over and spent an hour. We took him with us to a baseball game.

Four hours later the call came. He was gone.

He’s been up and down for the last two weeks. The memorial service was hard. My ex FIL was one of those men that you can’t help but adore. My mom was there, my dad & stepmom were there. One of my brothers attended with me. Not a dry eye was within the house. He really was someone that changed people’s lives.

Last minute I was invited to the luncheon and it was awkward. I didn’t belong there. But I will say that the reception and love I felt from B’s cousins who once upon a time all those years ago while married, was overwhelming. They hugged me and cried with me.

I’m not good with the death of others. I experienced this with my grandparents but I couldn’t deal. This time because I had to be so strong for my own child who was dealing with it for the first time I felt a strength I never felt before.

There have been days he talks to me about how his stomach hurts. He will suddenly curl up next to me and cry. I’m trying.

He’s trying. I want to be the best parent for him I can be.

And I wish that sometimes we didn’t have to say goodbye.

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Here it Goes

The last few months have been eventful.

Or rather at the same time, not enough.

Not enough to write about.

I’ve preferred to keep them close to the chest. Too much pain and confusion. Too much hurt.

See, I’ve been going through the worst depression of my life. Yet, I’ve done little to deal with it.

By now most people would have been to see a doctor and had a prescription given to them I’m wary. While I know that some work and they certainly work for my son to a certain degree, I am also acutely aware of how I want to feel and after all these years of feeling pain & confusion I’m not ready to rid myself of those emotions.

I’ve preferred to spend the last few months drowning, but coping. Helping my kids deal with whatever they were going through at school academically and with their peers. Just trying to be there for my husband through very exhausting and stressful times at work.

Yet…

There has been the usual.

Of course.

My health issues are always here. They’ll never go away and sometimes they’ll get worse. And lately that’s been the case.

I do try to pretend they don’t exist. Hell this is what I’ve done for nearly two decades. Pretend they’re not here. However lately things have been an absolute mess and I know that they’re the reason for the increase in the depression/anxiety issues.

I could start with the disability filing.It’s exhausting. What you’re subjected to. How to explain to a psychologist in a very short amount of time how angry and miserable you are. And really, you don’t get that much of time to explain this.You don’t get to explain that you have decent days. However those good days are fleeting and you have several hours within those days without issue. But most of those days you’re so petrified of driving because your sight is a mess, and because well, you can’t explain why but you’re driving home from the grocery store & your chest constricts. And the next thing you know you’re gripping your steering wheel, you notice that your feet are tingling, your eyes want to close, you feel as if you can’t breathe.

And nothing you do can change this. You try to change the station on the radio, or you turn it off.

Silence often helps.

This is a panic/anxiety attack. This is what happens when after 20 + years of MS you’re terrified to get behind the wheel. When there are only certain roads you can drive without the fear and bile rising within your throat due the fact that when you took them before you had flares.

This is life with MS.

Or rather…this is just a snapshot. This is a snapshot of my life. My life which used to seem so easy. Which has become so complex that I’m afraid to drive outside of my comfort zone that consists of the several blocks around my house. This is where things get so painful.

Imagine trying to leave your house to run a simple errand only you just can’t. It’s near impossible without that strange feeling beginning in your throat and your chest. Lately hitting red lights sends me into an absolute panic. There are certain main roads around here where when at a red light you’re on an incline. Because of this I’ve figured out ways to get around them & take short cuts. Just to avoid being stuck in that position. Again, this is just a snapshot.

And why the denial for disability was so heartbreaking. I was thankful however when my attorney’s office explained that an initial denial was almost the normal & that we had to appeal. Just last week I filled out those papers and sent them in. Next week I meet with a psychiatrist for the first time. I’m at the point where I need to do something to relieve the fears & anxiety that have been such a huge part of who I’ve been lately. Or rather, a detrimental part.

During all this I was fighting with the insurance & the pharmacy regarding the dosage issue with my Tecfidera. In case you don’t remember, I was on it for a short while last summer. Then I had the side effects that no one was supposed to have. Or rather, just the small minority. As my neurologist has now realized, if it’s a minor side effect I’m going to have it. Such as my colon going into distress after a couple of days on the high dosage. I’ve been off for nearly a year. It took this long to get us to agree I need to be on SOMETHING. I no longer have a choice. My once extremely passive MS has suddenly decided it wants to torture me. Which also makes me want to kick myself many times for not fulfilling many life dreams ahead of time. I’m working on trying to get things accomplished before the MS decides to go even more ballistic.

To make a long(sorry, VERY long) story short, after several months of insurance fighting the prescription being lowered to just one 120 a day(which is minimal) to give me a chance to adjust, they finally gave in two weeks ago. To say this argument was draining would be an understatement. It was a good deal of my depression the last few months. I spent at least an hour a day on the phone daily for 4 months with insurance or my doctor’s office. Who knew going on a lower dose would be so trying.

Deep breathes.

Ok, so we’re here. It’s all done. Just need to continue with the disability hurdle.

There have been other things going on, but I refuse to make this “the most depressing blog post ever”.

I’ll save it for a couple of days from now. At least that will bring my average of posting up from every few months to every few days.

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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.

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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.

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