Monthly Archives: May 2013

The Family Snapshot

Summer break has begun.

It’s only been one day. Yet I sit here and wonder how I’ll get through nearly three months with the kids. Don’t get me wrong I love these kids more than anything. But today started off with the two of them quibbling over how to properly prepare a frozen waffle.

A WAFFLE.

So of course they had to wake me up several times over how to cut it, and what to put on it. Now the 15 yr old knows better. But my dear nearly 7 yr old was being a pain in the ass. No two ways of saying it.
The unspoken rule is not to wake me up before 9 on weekends and days off. I’m no slacker, but I don’t sleep well on a normal basis.

Add a mammoth storm overnight and I spend half the night fretting over whether or not my soffit is going to fall off my house(yes, this STILL isn’t fixed). So I sleep horribly. C usually gets up with E and helps her with breakfast and gives her cartoons until I get up. Today however was the day they decided every ten minutes would be a great time to come up and irritate mom. Therefore my already sleepless self was beyond shaky all day.

Add an aborted attempt to go to the Y. We made it there but we arrived and E decided her stomach hurt suddenly and she couldn’t stay.

We went home and well, I felt under the weather with my eyes coming and going. We spent the day taking care of normal business. Then as the day went on I felt worse. No energy. Weaker than normal. I finally told J I was ordering out dinner. I was supposed to take C to the library for a volunteer orientation session. I was exhausted and cranky when we left. I knew it wasn’t the best time for me to drive but I had no choice.

I can’t even explain what happened next. I feel like I was there but “not there”. We were talking about E’s having a fit as we pulled out. My eyes were blurry but they went from blurry to flashes to not there. But I was halfway down the driveway. I heard the noises and that’s when I knew something was wrong. J’s car was in the driveway and I just ran into it.

The realization combined with the issues with my eyes hitting me was a nasty combination. At this same time my arms were shaking. I had seizures as a kid so I briefly thought that was what was happening. My son was freaked out and all I could say was “go in get him something’s wrong maybe seizure”. He didn’t know what to say so he gathered J ASAP. He ran out and I remember that when he came out my left arm was tremoring so bad it was whacking the steering wheel like mad. I couldn’t stop it. He couldn’t get me out of the car at first.

Once we came inside I realized I hit his car. Knowing how much he loved his car I panicked. He said it was scratched up but it was OK. It took some time trying to get the kids to understand I was ok.
Trying to explain this illness to them, how it’s progressed for me in the last couple of years, and what I’m going through is next to impossible. Especially when it concerns my youngest. She still doesn’t understand what’s happening with Mom. And why there are many days Mom can’t do what she wants her to do.

Eventually I called my mother who my son apparently had already called to freak out to about what happened. Long story short she volunteered to take the kids for the night. So J took the kids over to her house and this gave me time to think and rest.

I know that part of my problem is that I don’t sleep well. I never have.

However lately it’s been horrendous. I toss and turn with so many thoughts running through my head.

I do know that I’m lucky. That my kids are ok. And that despite the fact that I just whacked the hell out of his passenger side, my husband still loves me. Faults and all. Because when he came into my life I had many. And for his staying with me all these years I’m thankful.

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The Head & the Heart

I laid in bed with his arm across me. The room was dark and the house was still.

I sobbed as silently as possible. At first it was just small tears. A thought crossed my mind and it disturbed me. But the more that I thought about it the harder I felt them come. A tear rolled down my cheek and hit my shoulder. And noticing this I started to cry even harder. As quietly as possible so not to wake him. My mind raced and all these words came flooding to my mind of what I wanted to say, and then…just as quickly they disappeared.

I tried to get up without waking him, I grabbed my glasses from the nightstand and made my way downstairs.

Here I sat.

Something had been bothering me for a while. And for some reason tonight it was making me feel worse than I had felt in years.
This sense of not accomplishing what I was here for. What I needed to do. What I always wanted to do.

Since I was a kid I wanted to be a writer. Always. And throughout the years after there were several other professions that I thought I might be good at: psychologist, dancer, actor(I haven’t been onstage since the early 90’s, I miss it so), and singer. Writing however had always been my main goal. My first love.

I never went to college. Well, I made it to Community College. I barely made it through high school. Not due to lack of intelligence. No. My emotions have always been my downfall. I’ve always felt more then and seen more than the average person. Senior year I had one teacher say that I was probably one of the most hypersensitive people she had ever met in her life. And it was meant as a compliment. She later explained that she noticed I had a strong but not developed properly sense of intuition. She was right. I can still walk into a room and pick up on the energy around me. I can figure out whether or not someone likes me, who is nervous, or who is hiding something. When you’ve been this way for most of your life it can make you feel uncomfortable in most every situation. There are few people I’m truly comfortable with, people I feel aren’t judging me in some way.

This “gift” unfortunately stagnated me over the years. I led with my heart rather than my head. I found myself in situations that weren’t ideal, and I often made choices that probably weren’t for the best. Thankfully I learned lessons from each one.

I never had the chance to become a psychologist or an actor. And only now am I trying to be a writer. Through here at least. Which I’m thankful for this opportunity. My words perhaps will be seen by some and hopefully understood.

Back to earlier. Back to the tears.

Lately the jealousy I feel for others who can accomplish and be who they are, get out in the world and make a difference has been overwhelming. The things they can do that I cannot: travel, live, create. This jealousy has been eating me up inside. I get angry that I didn’t use my youth when I had it to go out there and try to be something. Someone/something that I always planned on. Oh the dreams I did have when I was younger. I used to write them down in notebooks. Plan them out .

Yet those damn emotions and bad choices always stopped me from proceeding.

Now I feel more stuck than ever. It’s this illness. My brain for the most part works fine. Unless you count the fact that there are times I forget the meaning of words, how to spell them, and sometimes when I write I later realize I left out words in sentences. My eyes however are a different story. I no longer trust them to drive from any close distance. I can travel fine around my town and just a bit beyond but any further, especially into the city is terrifying. This limits pretty much every possibility that is set in front of me.
I can’t see friends. I can’t go to shows.

It’s breaking me down.

Listen, I’m strong. I really am. For someone who for some god unknown reason was dealt a rather unfortunate deck from birth on, I’ve survived. And for years anything that came my way I strengthened.
Yet there are nights like tonight where I cry myself to sleep.

Where I wonder when I’m going to get my chance.

It has to be my turn sometime, right?

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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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Come what May

April was a positively horrendous month, I think we can all agree on that one. It seemed as if the universe had been in crisis mode from beginning to end. Disasters, traumas, and a lot of wonderful people passed away. I don’t know about you but I’m glad it’s over and I was hoping May would be better.

So far it’s not bad. The weather has at least improved. We’re now seeing more sun and it’s in the 70’s. However the rain and snow of March & April destroyed the soffit on my house. Or rather a costly mistake made by the installers of our new gutters a year and a half ago destroyed them. The front of our house is falling apart & off. I’m not kidding. It’s an eyesore, and birds are building a nest in the hole. Why yes, we are working with someone to fix it. It’s been a whirlwind of construction suggestions( a new roof, when really the roof isn’t that big of a problem right now) and insurance investigating twice saying there was nothing they would do. So that was what I did most of April. And to say it exhausted me is putting it mildly.

Each morning after heavy rains I would go outside to find even more of our soffit ripped apart and sitting on our driveway or in our yard. The nights we would have these rains I would barely sleep because as it thundered hard enough to shake our house all I could imagine was that the whole thing would be on top of my husband’s car in the driveway the next day. Thankfully that never happened. However, it left me sleepless one too many nights.

We’re still waiting to get this fixed, the construction gentleman did our siding over a year ago and he’s promised us the gutter people will be paying to have all the repairs done to the soffit. I’m holding him to this. I just want this fixed before the rotting worsens and the whole front truly DOES fall down.

Now on top of all this, that pesky little MS problem is still here. I keep trying to will it away and I was doing alright for a while. The only problem is that the flare is still going. It’s the longest flare I’ve ever experienced. Whenever I get remotely worked up or stressed out two things occur: 1) my hand and arm tremors something fierce 2) One or both of my eye muscles pull down and I can’t see properly.

When #2 happens it sends my body into panic mode. Add to the fact that this has happened while driving exacerbates the whole situation. My brain goes into overload sending my body onto a crash course of “I don’t want to work anymore”. Sadly it’s happening at least once a week now. Which is why I’m hesitant to drive just about anywhere that isn’t within a few blocks of my house.

I was having a problem nailing down a day to start the Copaxone. It seemed as if every weekend had something going on not to mention school winding down for the kids with many different end of school activities. I’ve been conflicted. I don’t know what the side effects will hold as they vary from person to person. I just remember my horrible experience with Avonex.

Yet after it happened again this week, and the increasing exhaustion & depression-a depression unlike anything I’ve felt before, it’s more my anger at all of this and feeling limited- I decided that I need to start them. Also my mother more or less hounds me on a regular basis that I’m hurting myself by not starting them.

I’m starting them in a week. I don’t know what else to do anymore. I don’t know if they’ll help, if they’ll slow down this constant feeling of my body & life being out of whack. It’s worth a try.

So I’m canceling May. I’m not committing to anything and I need to take a break from decisions. In fact if I could get someone to clean my house & sort through the kid’s toys then my life would be peachy.

In lighter news: I’m a redhead again. And I could not be happier. Though I wouldn’t mind being even more red.

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