Tag Archives: anxiety

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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Some days, that’s what I feel like doing.

Just taking off to places unknown. Where no one knows me. Where perhaps I could start over my life. Taking the fewest belongings and running.


Every time I think of this, every time this desire to move or to run has come over me these days(especially these days, because earlier days I came really close to just running) I’ve come to the conclusion that whatever it is I’m trying to run away from is going to follow me.

I constantly want to move away from every town I’m in the last twenty years. I figure that if I keep going, if I find this so-called utopia that exists in the back of my mind all would be ok, my pain and my problems would all disappear.

Then I grew up. Or rather I figured it out. I’ve been trying to escape the pain for so long that I’ve thought that running would fix it. A change of place. New people. However, that doesn’t change that just maybe I’m still me. I have some friends. Some they come and go. I can’t seem to keep them for long. Or I keep them as if they were in the back of my pockets and only taken out when needed. Only it’s me that they don’t need.

I’m still the me with the same desires. The same fears. The same tragedies from the past holding me down mentally and often physically. I fall into bad patterns and can’t seem to crawl myself out from under them. For years I ignored them and figured it was just the pain seeping through and all I could do was push them aside, these patterns, try to find a way to muddle through. Be it through cigarettes and alcohol, or through one bad relationship after another.

Part of my reason for writing this is that I feel alone. Don’t we all. We all always feel alone. I have friends who have literally disappeared. Some I’ve grown apart from. Our ideals no longer match, and that’s hard to realize and accept. Others, they just decide they want nothing to do with you because you no longer fit what they need. You aren’t good enough perhaps. I don’t know. I try with others so often that I’ve come to the point of rejection that I’ve decided I won’t try anymore with anyone.

I had so many dreams growing up. The earliest of course being that I wanted to become a successful writer. After that, actress, forensic psychologist and salon owner fell into place one behind the other. The writing was part of me, it became ingrained in me from a young age when I taught myself how to read at a very young age out of determination and jealousy that my older siblings could go off to school and I couldn’t. From there, as my mother would recount, was when I fell in love with the written word. When even the smell of books would makes me happy. It still does to this day.

Books were my escape as a child and even now. When things become unbearable I know that I have different lives that aren’t mine to escape into. Both fiction and non-fiction.

To go back to where I started with this however, I’ve come to a point where I’ve realized that I can’t run away. I wish I could. I wish sometimes I could pack up my kids, my cats and dog, my husband and my many books, and just go. Anywhere.

I’ve yet to find a town that understands me. It could be turned around that I’ve given nowhere a chance.  I’ve given everywhere a chance. Everywhere just hasn’t given me a chance to be who I am.

I’m going to turn back to writing. I have a book I’ve been writing off and on for about two years. About a woman and her experiences with MS but, there’s a twist, a couple twists and it’s not what you’d expect. There have been few to no books or movies/shows that have dealt with MS and I think it’s time.

I need to refocus myself and finish this book. I’ve been afraid of it for so long because some of the tribulations the character goes through are what I have with MS. She’s me, but not me. There are parts of the book and characters that now looking upon them after all this time I think needs tweaking but for the most part, I like the direction the book has been going. I just need to get back to it.

I need to forget everyone who seems to have forgotten about me. That includes friends AND family.

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Easily Undone



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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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.


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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My Other Car is a Tardis

(Updated-See Below)

Two days ago I was driving through my town, and stopped in front of me was a car with this bumper sticker on it. I started laughing hysterically in the car leaving both of my children  to wonder what in the world was wrong with their mother.

All my life I’ve either been very early to the party or very late. This time around I received the invitation, I inspected it, threw it aside because I was busy, and then once I got to the party  extremely late realized why it was so incredibly fun.

This is my analogy of me and Doctor Who. I’m that person. That person who knew of it, saw a couple episodes here and there but never gave it a chance due to other commitments.

Then I was bored one day, flipped on Netflix and said screw it, I’m going to watch it. So I started with the reboot of 2005 with the 9th Doctor. Its stars were Christopher Eccleston, who sadly I can only equate with Jude in which he starred in with Kate Winslet years ago, which disturbed me immensely at the time. And Billie Piper, who having seen her on Diary of  Call Girl on Showtime a couple of years ago,  I’m very happy she has since fired her stylist post Doctor Who.

I was hooked. Immediately. There was no feeling it out like often there is with certain shows, first episode in I was beyond excitable.  Now I’m just at the tail end of this season. A couple more episodes to go. I’ve heard so many fabulous things about the David Tennant(and especially the Matt Smith, which I’ve heard nothing but positively beautiful things about) seasons but I’m determined to stick it out and go episode to episode rather than jump ahead.  Unfortunately this may take a while as I rarely have the TV to myself, or rather the time to sit watching episodes back to back. Though I suspect I will try to make the time while the kids are at school. The best part of all of this is that I have my 15 yr old hooked on the show. Makes me a proud mom.

Back in high school my friend Hollie was a huge fan of the show, I’m talking the 60’s through early 80’s version. I remember being at her house and her trying to get me to the watch the show with her. I tried but my mind was elsewhere at the time.  I’m kicking myself a bit now wishing I had actually watched those episodes with her.

I’ve always been a huge fantasy/sci fi geek so this makes a whole hell of a lot of sense. I just love to pick up on things later than the average human being.

On another note,  life has been a little frustrating the past week. Or rather frustrating/enlightening.

So last I wrote I was having all these issues with my MS.  That won’t change, how I try to manage that I believe will. I’m trying to instill some immediate changes. One of which is thanks to the mind of my 6 yr old. She’s decided that I need to walk to her school to pick her up each day after school.  I was resistant at first. My legs have awesome days where I can dance, run, and do whatever is necessary to get through the day. And then there are days they’re a bit off. It’s just the nature of the illness. I decided to give it a chance and you know what I realized? I’m stronger then I thought I was. I started walking each day  this week to get her. And not just to get her, but each morning after dropping her off I would walk the dog for a little less than a mile. I know this sounds lazy to some, but if you’ve never experienced this bitch of an illness I’ll tell you right now that’s a fucking massive accomplishment to many of us MS’rs. There are some days where getting up is a milestone.

As  I’ve walked each day I’ve felt better. Some of the depression and anxiety that had been taking hold the past several months seemed to let go a little. My kids are off of school for a few days due to conferences and Columbus Day. I decided to push the 6 yr old to a long bike ride(her) and walk(me).  She loved it and I admit it felt amazing to put my legs out there again.  She kept riding so far ahead of me, teasing me, saying ” you’re never going to catch me” that I would have to run after her. And each step I took felt better then the last.

I made a pact with her when we got home that now until it snows that unless we have bad weather I will walk to get her and we’d walk home from school.

Four years ago I did the MS walk. I was living in Oak Park at the time and the closest neighborhood to us that was doing it is the one I just happen to live in now. I remember walking about 4 miles that day. And feeling amazing. I said that day that I would do this every year until one day my legs completely fail me. Sadly there were a couple things that got in the way the last couple years, but after the hell I’ve been through with these legs this past year I didn’t realize how much I took them for granted.

So this next May I’m doing the walk again. As much of it as I can.

On the MRI front- Insurance wouldn’t approve it unless I saw the Dr. The Dr. said she’d try to fight for me but that it would be impossible since she hadn’t seen me in so long. She also went on to tell me(via phone) that  she didn’t see why I wanted one considering the fact that I’m still so anti-medication. Even seeing me for an office visit would be a waste of my time.

Try to picture my facial features at this time because let me tell you I was sucking my cheeks in and my eyes were bugging out of my head. I was a bit pissed off. I mean I am allowed to come in for a long overdue checkup as a patient am I not correct? There’s no need to make me feel like something less than.

I was angry but said fine, we’d discuss them.  I made the appointment. And then made the MRI appointment for a few days following.

Then things came up this week. So I had to cancel them. And the reality is, she’s right. I’m not going to go on any of the ABC drugs or any of the new ones such as Tysabri or Rebif. I don’t dig the side effects. I know this is controversial, so I’ll stay there for now. I’ve gone 20 years with very little medication and I’m hoping to go many more without them.

(Update-I received a letter from my insurance company this afternoon. They went ahead and approved the MRI’s. So I don’t need to see the Dr to take them. So now I get to reschedule them for this week. I just want to see where things are with the lesions, which is why I’m so determined to get them)

The crappiest part of last week was realizing that with all the weakness I was experiencing , I canceled my  dance/burlesque classes. I seriously cried that morning when I decided that waking up early and rushing to a train each Saturday morning was going to be hard on my already taxed system.  As you probably read I was looking so forward to these classes. I couldn’t wait. But I knew I couldn’t do it until I was able to repair my system and my body.

I emailed the owner of the company and explained what was going on. I knew they didn’t offer refunds. So I figured I’d take some time to heal and take the class in the winter. She however emailed me back a couple hours later completely understanding and wished me good health, and said she would refund me immediately. And she did.

And for that I’m grateful. I felt like I gave up a dream when I canceled the class.

However,  I’ve decided to get back to some basics and that starts with getting myself healthy , or rather stronger and then trying again once I can. Which I know with my determination won’t take long.

Over the last few years I think I gave up and just tried to get by. Now I know that’s not good enough. I can be either the most outgoing and determined, or the most complacent human being alive. For now I’m reverting to that determined part.

I want to work on the strength I had before this illness started kicking my ass a bit. I may have good days, I may have bad.

Stay with me.

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