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Easily Undone

glasses

 

This week has been a strange blur.

First, I’m dealing with the fact that I’m back here. Here. Writing. Trying to put myself out there. Even if it is just for me, or for the few who actually bother to read what I have to say. Still, I’m doing what I need to do.

This week has been strange. Emotional. Physical.

The holiday being in the middle of the week threw me, and my family, off. Nothing has been normal. Add the full moon tonight, a power which I strongly believe in, and my energy and my output and emotions have been thrown all over the place.

Let me start with this: With the longtime MS I’ve had physical limitations. And over the last two years they’ve been more intense than usual, partially due to my mental/emotional issues/responses to the MS. My anxiety and depression being so deadening I found myself spending a good part of the year curled into a ball in bed or on the couch when the youngest was at school. I lost a good portion of who I was. This year was my worst. It was late spring when I slowly, but surely started to climb out of this. I’m still climbing. And this summer, knowing that summer is usually my roughest time of year, I’m actually doing fairly well, considering.

Anyways, with these issues, I gained weight. My legs became weaker. My legs have always been a huge issue with my MS. They were one of the first indications I had MS. Years before I was officially diagnosed. Sometimes they feel like dead weights. But late spring I forced myself to get up and start walking. I would push myself till I could start walking to meet the kid at school a few blocks away. While to most of you out there, you’re thinking “I can do this any day”. For those of us with decades of a neurological illness that affects every aspect of your daily being, your daily movement, to fall into this type of trap and eventual ability to crawl out of it, is monumental.

As I said in my initial “I’m Back”, there is a lot I could go into regarding the hell I’ve been through with the MS the last couple of years, but I’m not going to drop it all here and now.

The weight gain isn’t huge, but for me it is. I’m not who I remember, yet at the same time I’ve come to love myself a lot more now, in my nearly late 40’s, than I ever did in my 20’s or 30’s. I’ve come to understand that my body has its moments, its limitations, and it’s still worth being here. I have a spouse who loves me. Who doesn’t mind that I’m not perfect. I’m not a waif. I was, back in my 20’s and early 30’s when I was post divorce and smoked my brains out.

When I was a size 2/4/6 I pushed myself hard. I was a smoker. I smoked because it was for the most part, what I was taught was the way to keep my weight down. It’s been 12 years now. Since I quit. I don’t talk about this often. I’ve had my few moments where I’ve had one in serious times of stress. Every couple of years. There was the time 11 got her head stuck in the railing(age 4) and the fire department had to pry her out. The time my AC died and we were fairly broke at the time and it cost and arm and a leg. And I had to take the kids to my mother’s. My brother was there and he handed me one on the porch and I didn’t blink. I knew better and felt worse the next day.

May I add that I took myself to the immediate care this week to rule out a blood clot in my leg due to serious pain? I knew I was being dramatic. That the pain was me and the new workout routine aggravating a former muscle tear. After two hours and an ultrasound, I was right. But it was worth the peace of mind. Also, never Google leg pain. Ever.

Also, late night fights with glasses are rough. The winner is usually undetermined. Especially when the amount of wine drunk is a catalyst.

 

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The Simple Story

I’m back. For now.

The last three years has been eventful and at times, not so much.

It’s been equal parts exploration and misery.

The MS hit a point that it’s never hit before and it caused me to stop driving. Period. Nothing. Nada. Nope. 18 months ago.

I’m still on the precipice of starting over. Only in the last two months have I tried. It’s been…ok.

Much of this was caused by a severe uptick in anxiety. Most of it due to my MS. My vision issues bite.  Primarily social anxiety.

I’ve always dealt with not always fitting in with others, though usually I would find those who stood on the outside, just on the very outside, just like me, that I could be friends with. This town however, it broke me. It broke someone like me. It’s good at breaking people because of who you have to be on a regular basis, but I could never and will nor want to, fit in. Therefore, I’ve been a prime target by other parents.

There it is. Parenting is a bitch when you aren’t custom made, custom ordered. When you don’t try to be everything for everyone else. And you god forbid, have tattoos and fight against the normal. Listen to music that can’t be found in the top 50, and understand the ways of others that think outside the box, who might deal with feelings in ways unorthodox to you.  In a town so dead set on being normal that if your daughter doesn’t wear the right brand of underwear she’s an outcast.

I won’t abide by this. I never thought I would. I grew up in a town similar to this. It’s where I lost myself. Where I realized I would never be what my family wanted me to be. Despite the traumas I experienced that I never asked for. Not that anyone ever asks for any traumas.  This I’ll go into as time goes on.

I’ve chosen to keep this off social media this time around. I’m not looking for the hits. I just need the output, the ability to write my feelings out. I had to start seeing a therapist on a regular basis this past year and she’s finally sussed out that my problems with feeling dead inside sometimes has to do with my family and especially what I dealt with growing up in the town I did. The abuse I experienced emotionally and mentally from family and friends. From expectations. Why the past year I’ve kept a serious distance from most of my family.

I know this is the most depressing “Hello” you might read, however this is what it is. I promise, it won’t always be this dark, but for me, some days it will be.

 

 

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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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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.

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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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