Tag Archives: anger

Shake the Disease

It’s been a while. I’m sorry.

No, I’m not. Life has been a whirlwind of emotion, illness, and not wanting to talk to people.

Since the last post one child has started Middle School, the other(the one with Aspergers)has finally had the chance to learn a skill and move forward in their job thanks to an amazing new boss, and I’ve dealt with a very close family member go through surgery due to cancer.

It’s been a hell of a month. We’ve had our good moments(took the kids to their first Comic Con-which incidentally was my first as well and oh my god I saw Alex Kingston and Jenna Coleman from a distance), My anime obsessed daughter got to meet and take a photo with one of her favorite anime voice actors(his assistant was just divine and I wish I could thank her for fixing what could have been a bad situation, with grace).

I’ve sat here on so many stories. I’ve sat here thinking about what life would be like if I could redo age 9 on up. Part of me has been paralyzed with fear. I’ve tried writing but the words get muddled. I blame the MS sometimes. But I know this is a horrible excuse.

One of the things I swore when I was first diagnosed over 23 years ago(symptoms started 4 before this and suspected by a doctor) was that I wasn’t going to let it interfere in my life. Yet, here we are.

I’m tired all the time. Except for the times I ingest caffeine. I quit caffeinated coffee 13 some years ago. Two months before my wedding. I had been having severe panic attacks and I didn’t know what they were. After several hours in the ER(where after not being seen for 4 I finally turned to J and said “Lets go home”-I’m surprised he still married me) the Doctor I saw two days later told me my intake was a contributor and go turkey. So of course this two pot a day for 16 years person suddenly gained 10 lbs before their wedding. A first according to the woman who was fitting my 30’s inspired wedding dress. She did not like me.

Let me go back, I have my moments. This disease. This illness. It’s not a disease. You can’t catch it.

I don’t like myself. I hate myself often. I hate myself for not following through on my dreams. I’ve wanted to be a published writer. Ever since I could hold a pencil and wrote my first stories in grade school. Yet, I let the emotional and health difficulties get in the way and take me down. I’ve let the issues with my children and my own self-esteem tear me apart. I’ve let this illness bring me down.

I see other friends talk about how much writing they’ve accomplished each day and I find myself incredulous and angry. Jealous. I hope for a couple hours every two weeks. It’s what I can deal with when my brain is coping in good months. In bad months, with the responsibilities and the anxiety/depression I already I deal with, I give myself no deadline. It’s what I can do when I can do it.

 

 

 

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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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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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The Tide Turns

I need to step away.

Perhaps get off of my soapbox. But that would be absolutely, positively no fun.

Growing up I was the one who kept their opinions to their self. I had many, trust me I had many. However I just didn’t like to rock the boat. I reserved that for my siblings who had zero issue with rocking the proverbial boat at home. So I stayed quiet and out of their way.

Years later of course I found my voice, this coincided with becoming a parent, going through a divorce, dating again(not recommended) then remarrying(though I guess you have to date to do this part) and having a later in life kid. During this time I realized that I could not keep quiet about what I believed or thought(nor should I have). This of course resulted in me being labeled “nice with a side of bitchy”. Hmmm. I prefer to think of it as “no longer your flipping doormat”.

I’m applying the latter to most everything in my life. The down side is that maybe at times I’ve become a bit too self-righteous for my own good. I often don’t like to back away from certain subjects when I know that my point needs to be taken more serious. Or when I think people aren’t being objective about something and are looking at it from a hard angle rather then from all angles.

The one subject that really has me worked up more and more over the last few years, and increasingly so the last few months is the MS meds life vs the No MS meds life.

There are so many patients out there who like to scare the hell out of other patients by stating that MS is a death sentence and if you don’t take the meds you’re killing yourself even more. Listening to this(or reading this) really can be frustrating. Not all people with MS are alike. Not all cases of MS are alike, and the reactions to meds are not alike.

Sure there are some medications that are nearly guaranteed to provide certain side effects. With Avonex there’s the flu-like feeling that hits the first 24 hours. For some it’s hardcore, with others it’s as if you have a really bad headache & mild body aches. It’s there, just not as bad as it is for other patients.

I won’t even pretend to know what the side effects are with the other medications. They run the gamut. I know that with Tysabri(the once a month IV infusion) you have to be tested for the JVC virus before you can start it due to the early cases of PML that people developed after taking it. Which is an often(not always) fatal brain disease. If you’re positive for it you won’t qualify for the medication.

I’ve always been a bit negative when it came to the medications. For years I would warn people away from them. Well not warn, just let them know that if this isn’t what they really wanted to do and if they were on the fence then they shouldn’t go on them. This has been an unpopular opinion.

However as the years have gone on and my years have gone on in participating with many MS groups and boards I’ve seen a growing contingent of patients who refuse to take the medications, and people like myself who have seen an odd connection with a deterioration that is faster on the meds then not being on them. One of which is that each medication causes side effects. And often those side effects cause another drug to be prescribed. This goes on and on until people wonder why they feel worse on these medications instead of better.

Before anyone jumps down my throat that I don’t know what I’m talking about, I do. It’s been 19 years officially diagnosed, but I had symptoms for several years. As early as my late teens, before the diagnosis. I even had doctors wonder and suspect the MS despite how mild it was. Until the official diagnosis when the lesions were seen was it made clear. So I’m going on 24 maybe 25 years now. Which to many seems illogical that I’ve made it this far without being on meds.

But I have.

I tried Avonex twice. Within a year. I lasted a couple of months each time before the horrible side effects frightened me off for good, nearly ten years ago. My only other experience with any medications has been with prednisone, which is a steroid. I’ve had to go on that at least three times, the last about three years ago. The first time I was put on it was shortly after thanksgiving of 2004. I was married just weeks prior. I had a really bad flare and saw my dr’s partner in his office thanksgiving weekend. He put me on a dosage I would later discover was twice the amount that would have normally been prescribed. Not only did I blow up like a giant moon within two days but I picked fights with everyone around me, in that process I also severed a friendship for several months because of my sharp words and judgement. The steroid is infamous for making people’s emotions escalate, and with my being on a much higher dose then normal, the damage it did to me mentally was off the charts.

From these experiences I decided that the drugs were not the best for me. So I went on without them. Now my MS was always fairly mild the first ten years of official diagnosis. But by the early 2000’s they took a sharp then even sharper nosedive. This is how I ended up on the Avonex. And off of it.

Over the following years I realized I did quite well off of the medications. Though I had flares even my then Doctor told me that I was doing remarkably well considering what my tests showed. And yes, here’s the odd part. Take a look at my MRI’s and I have all these lesions. But when he would have me in an exam room, despite my reporting that I had problems, he would tell me that I would pass the physicals. This often left me upset and angry. I knew what I was feeling but why was I passing these exams? The Doctor always found my case to be an enigma, and he was fascinated with my strange, conflicting exams.

It was then one day when he told me that it scared him. I had officially failed a physical exam. This was a year after my daughter was born in the late 200’s. He brought up the medications once more to me in a manner that conveyed “I’m not going to push you, but you’re not getting any younger or healthier”. I refused once more.

Now we come to several years passed, and why I’m writing this:

My condition has deteriorated to a point that I finally have agreed to go on the medications. Keep in mind this is way past the years of when most people are on meds. Nowadays they have patients on medications within weeks. I’ve lasted almost two decades.

Since I started writing this a few days ago some things have drastically changed.

Next week I was supposed to start the injectable Copaxone. It’s the one inejectable medication for MS that doesn’t have such horrific side effects. Though from what I’ve read online on my groups, this opinion varies. Some have said that while it doesn’t give you the flu-like symptoms that the interferons give, there are some side effects such as hair thinning/loss and weight gain associated with it.

I admit this was somewhat frightening and off-putting to me. I’m in my early 40’s and I still have a very vain side that has no desire to deal with the above. I would like to keep my hair, thank you.

I called my Neurologist two days ago to talk to her about an issue/question regarding a drug my dentist wanted to use for a procedure. Something I have an extreme reaction to.

While talking she asked me about the Copaxone and noticed I hadn’t started it. I informed her it was in my fridge and the nurse was set up to come out next week to start the dosage. She said to hold it. The new drug BG 12( Tecifedra) that had been out in Europe for several months, and approved in March here in the US, was available and she thought it would be the right time. When we initially discussed it over two months ago, it was yet to be approved by the FDA. She said at the time that she would hold off several months until it was on the market for a while.

Something happened though that made her feel it was the right choice and the right time. She told me she was pushing it through to insurance NOW. It’s an oral drug that’s taken twice a day vs the once a day shot via Copaxone. The side effects are reported to be minimal compared to most every other MS drug on the market. Plus reading some of the daily reports on the message boards I’m hearing some amazing progress. People are saying they have more energy, less spasms, vision problems practically repairing themselves.

This really has been heralded as this miracle drug for people like myself. Patients close to that edge or just going over that edge. My doctors never thought I’d get this close.

I never thought I’d get this close to really question my own mortality. The last few weeks have been frightening and have pushed me to a point I never hope to go to ever again. I’ve honestly looked at the fact that with my sight problems and cognitive issues, there just may be a time I may never see my kids. Or just not be able to drive them to activities and appointments. The little things that sometimes we all take for granted. I realized that I don’t know how much time I had left. I just watched two women(Annette Funicello & Chrissy Amphlett) I grew up admiring from afar die within weeks of each other due to complications of MS. This impacted me far more more then you could ever imagine.

I became depressed. I lashed out today and said enough is enough.

I jumped off that box I stood upon so proudly all these years. I decided that now is the time I try something new. So as soon as it’s approved by insurance I’m going to try this new miracle medication and hope it helps.

I’m still going to deal with the depression problems. Today was an eye opener for everyone in our family. I may go on meds for the first time ever. We’ll see. I do know it’s nothing to be ashamed of. It’s something I need to take my time on.

I just want to keep living. I don’t want to give up who I am and what I believe in. Yet, I don’t want to let this take me over for good.

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It’s been a while.

It’s been a while.

I don’t think I’ve written in a few months. And for that I’m sorry.

Yet I’m not.

The last three or four months have just been impossible to explain.

There really is no good reason. Sure I had the stress of dealing with the cookie sales for Daisy’s/Girl Scouts( I know it seems silly, but honestly it’s a pain in the ass and took up way too much of my time) yet the stress of some of it seemed to combine with some other small things going on to create a perfect storm with my health.

Last I wrote was not long after Christmas. I’m not even sure now what was said or written.

I just know I lost my passion for writing. For feeling.

Around that time I seemed to be dealing with more and more symptoms relating to my MS. Symptoms that made me feel like I was aging quicker then I should be. Many of them took the form of emotional  which then transferred to physical, causing my body to want to shut down. I found myself wanting to do nothing but burrow under the covers and watch TV series on Netflix or On Demand while the kids were at school.

The effects of this were that I was continually fatigued and weak. I felt more ADD then I ever had before. I know I’ve always dealt with it since I was a kid, I was just never diagnosed. My mind goes from one thing to another in rapid speed. Sometimes I’m convinced it’s why I have such a curiosity about everything under the sun. And why I know a bit about everything but never more than that “bit”.

It was the beginning of March when I finally forced myself to the Neurologist’s office for the first time in two years. Even throughout all of my flares I never went in. If it were one thing I learned over the 20 something years I’ve had this illness it’s that going into the Dr’s office for every odd feeling meant a 50 dollar payment and the possibility of being put on a medication. So for those reasons I chose to deal with the symptoms & issues as they came along. Despite the worsening of the flares, and their frequency.

However the reason I went into the Neuro’s office was due to the fact that for weeks I had this continuing issue with my eyes. It kept feeling like the muscles were pulling down my eyelids. This could occur at most any time of the day no matter where I was. Most often it was when I was in the car. So many times within a couple of weeks I came close to getting hit when I couldn’t see the car coming from the right or left because of the direction my eye was pulling down. It was my wake up call, I couldn’t put these issues off any longer.

My mother took me & my youngest that day and she had yet to see the full scope of what was bothering me.

Then when we were sitting in the Doctor’s office I could feel the change in my eyes and told her to look, it was then she exclaimed with her hands flying to her mouth ” Oh my god, one eye is pulling down and the other is looking the other direction”. Yes. This was unusual and frightening.

I went in and talked to the Dr and she admitted that my attempt at the MRI months prior at least showed that my lesions had increased. She said that there wasn’t more to say then well yes, your MS is probably getting worse.

Now let me back up here.  See, for years my symptoms and tests showed that it was there and it was perhaps progressing at a normal speed & perhaps I would never go much farther than it.  In fact 2 years ago I sat in my doctor’s office and she tried to sell me on the medications once more only to tell me that really it’s been nearly 20 years so at the rate I’m going she didn’t think I would get much worse.

So imagine me sitting here laughing at this right now.  This visit, this one I had March 1st, she sat there gravely after examining me, telling me that my physical state has shown a change(despite my flares & MRI’s my exams in the office were always shining). There was the distinct tremor in my left hand(it’s been there for a long time). My eyes weren’t focusing and following properly. My reflexes were “ok”. My walk was off. Ok. Words often escaped me. As a writer this a waking nightmare, but I’ve discovered that speaking is harder for me then actually writing. Though my ability to type has slowed down.

The words she spoke next were not surprising, and this time after all these years I knew she was right. I have to, no she said “you don’t understand, you HAVE to” go on the medications.  I didn’t even blink. I agreed to it. We talked about a couple of the different drugs that are offered to those of us with MS. For so many years there were only three, the ” ABC” drugs. Now there are several more including one that was just approved nearly two weeks ago that is being called the “wonder drug”.

I left the doctor’s office not sure what to think. I relayed as much as possible in the car to my mother, even though my 6 yr old was sitting in the back seat. I went home and told my husband . I made a few phone calls not sure if I could accept what was being laid down in front of me.

It’s funny but I followed my general protocol which is to ignore anything even remotely disturbing regarding my health and continue on as if nothing was wrong. However I also sat on my computer for a few hours and researched some of the medications that she had brought up to me trying to decipher if any of them would be right for me. Later that night I broke down crying on the phone to my mother. She told me she was waiting for this call, she said that earlier I was taking it all too well.

I was hesitant with the Copaxone at first due to the fact that it was a daily shot, however the more I did the research on the oral drug Aubagio some of the side effects weren’t things that I wanted to ever encounter. One of them being hair thinning and loss. While yes that is the most shallow of reasons not to take a drug, if I’m to be left with any dignity whatsoever in my remaining years I would like to retain my hair for as long as possible. I’m sorry for that vain moment, but it’s mine.

The more I did the research the more I learned that out of the injectables the Copaxone had the least amount of side effects. And that eventually in my quizzing of other members of the MS groups online that I belonged to there seemed to be an agreement in this area.  I called my doctor the following week and made a decision.

The copaxone is currently sitting in my refrigerator. I’m currently unable to schedule an appointment with the medical company to get them to send a nurse to come show me how to inject the medication and get this started.  I know this sounds misguided and wrong but what it is is that it is the end of the year for my kids and there are many events coming up that would interrupt any time I would need to take off.

I don’t know how the side effects are going to hit me. I remember how they hit me when I was on the Avonex years ago, and that was enough to scare me off for years. In fact I swore that the medications did more harm than good. And to some regard I still stand by that, I think some cause side effects that end up being treated by other drugs which lead to complications.

I will start the medication probably the end of May. By that point my kids will be out of school and my mother has offered to help me out with them should there be an adjustment period.

So it comes down to this. Something I had hoped would never happen.

However I’m no longer scared. At least not like before. I’m no longer who I thought I was, I’m weakening. Something I prayed wouldn’t happen for years. But it’s happening now. There are days and weeks where getting up and functioning seem like something in the distant future.

Just this week the excessive rain brought me to a standstill. I went further into this depression I slip into when I don’ t feel myself. I’m angry and hurt. My life isn’t want I planned it to be. But I will tell everyone NOW, there is no internet link you can send me that will make me think that I can prevent this or heal myself. Thank you, but no your information is incorrect and unwanted.  I will get past this it just takes time.

I’m going to try to write again. I’m going to try and keep this place up to what it should be. Well I should, I just paid for it to be renewed for a year.

Music has always been my love but I neglected it. Right now it’s saving me. Going back to what has always made me sing and dance, made me laugh and cry is driving me to go forward.

So soon, I’ll see you again, or talk to you again.

 

 

 

 

 

 

 

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