scrambled brains

I want to write something just for me...just to get it out.

Okay so I am losing my mind. Bit by bit. Nahhh I know I am being melodramatic. My mind is here I am just not able to think straight.

And to think people use drugs or drink alcohol to reach such states.

I have children who need me. And my mind is fucked up. I used to be sharp and now...hell...I am having trouble conversing...remembering little things...and sometimes big things. I have misplaced bills. I forget what I am supposed to be doing. And I'm tired. I get so tired. But I keep forcing my brain to work.

Yeah I know I don't talk about this too much. It is because it hurts.

People expect me to be the same...to function just as well...to be normal. But I'm not.

I'm not sad. I am just...staring at my reality. Am I scared? I can't go there. I don't have the luxury.

If it were just me...oh hell...I wouldn't care. But my kids. My youngest doesn't understand. He just needs...so much. He will be in my care probably the rest of his life. His autism is...severe. Oh god I worry about him.

I need to fire my neurologist. A simple appointment she said would be made...was never made. If this were the first time then sure. But a year of this fighting the system and I can't do this any more. Four phone calls later and I still do not have my next MRI scheduled. And I get attitude on the phone. Four friggin phone calls and I cannot get the MRI scheduled. When I do get my scan I am going to take my little lesioned self with a copy of my MRI and go to another doctor. They deal with neurology patients...people with Alzheimer's...people with MS...and yet they make everything so damn difficult. I do not understand.

I don't even want to have this MRI. This is the one to see how things have progressed. This is the one where I get big pressure to take the meds.

I don't want this disease. Is that fair to say?

People depend upon me. And once again....I am so damn disappointing.

I keep going, going, going and sometimes every once in a blue moon...I...have to just stop.

My thoughts blow like the seeds of a wish flower into the spiraling winds.

The mystery is solved...

whew...

okay just got back from seeing the nurse who actually is a physician's assistant? a PAC? she was...excellent. finally...someone to help me! halleluyah!

this is an exacerbation of my MS.

i do not have epilepsy. these are not seizures although they sure look like them.

she was really helpful and empathic.

she told me how she had a nurse friend come in and it totally looked like a seizure, sent her upstairs for an EEG, the EEG was clean, then sent her for an MRI....and turns out she had MS.

this sure is a funky disease. all sorts of things can go awry.

i just feel relief.

tremendous relief to know i am not dealing with a second disorder/issue

and...i got a prescription for prednisone and...a muscle relaxant.

the not knowing...can just drive ya nuts.

now i know...i am getting help for the symptoms...and i know this will eventually go away. i feel so much better emotionally.

of course they used this opportunity to talk MS meds again. i am not on any. so...i am listening. i have my next MRI in october. i feel...more ready to try something. i hear fingolimod may be ready for the public come january of next year. i would try an oral med. if not that...i...can't believe i am saying this but maybe...maybe i would try rebif.

we will see.

being forced to stare your disease right in the face...it ain't easy.

thanks for all your support and help. you all are very appreciated. thank you.

Mystery symptom continues...

well now i am stumped.

my episodes are continuing each day without fail.

i will try to explain exactly what happens:

* first i feel some sort of warning like sometimes i feel sick to my stomach or i feel painful zaps in my head or i see flashing lights in the periphery. i always feel disoriented before one comes.

* i feel some sort of surge in my head and this surge travels to my right side.

* my leg (primarily)and arm will shoot out, elongate as far as they can go, and then retract and shudder.

* this cycle of elongation and retraction will go on for 15-20 minutes.

* afterwards i feel some aftershocks (facial and head twitching) and i feel very tired. my muscles on the right side get such a work out that they ache and are stiff the next day.

* there really is no patten to them that i can discern. when they happen, i am not stressed. sometimes i have just eaten previously but not all the time. sometimes they happen indoors and sometimes outdoors. heat doesn't seem to be a factor.

more notes: i don't have any pain. i don't have headaches. i have the zaps in my head which are very painful but they only last a few seconds each.

this is the big thing here that happened yesterday.

yesterday i felt very good physically. i was outside at a park with my son. it was hot and humid. i had no MS symptoms and i didn't experience this symptom either. i thought...good things are getting better.

but then last night...in the middle of a deep sleep...i startled awake as the convulsions were happening. so now they are happening during sleep.

i don't know what this is but...i want to be very clear and factual with the doctor if i ever do get to see an actual doctor!

i feel disgusted and helpless. i see a nurse on monday at the neurologist's office. i do not have high hopes.

New MS symptom

Don't ya just love neurological disorders?

I think the excitement and thrill of it all lies in the wonder of what symptom is going to come out of the blue next.

Today I saw flashing lights. They literally grew out of my peripheral vision and enlarged to a waving sparkly zig-zaggy aura on my right side. I had seen this once before a month or so ago and it was followed by this tremendous surge in my head. Both phenomena are difficult to explain. This time...so far...no surge, but my right arm, hand, and leg, foot are affected and going weak and numb.

I tried to google this and found that people with migraines see this sort of thing prior to their having a migraine. I have never had a migraine in my life that I could feel anyway. I know some migraines are painless.

What to make of this? I do not know.

Anybody else have these symptoms ever? Wanna share?

PS: I changed my name back. What the hell was I thinking?

Sympathy for a Broken Umbrella

When I was a little girl of about six years old I had this beautiful red umbrella. I loved it so. I looked forward to rain showers just so I could carry it with me. And why shouldn't I have loved it? It gave me protection and a feeling of safety. It was my portable shelter in storms. But of course there comes a day when our favorite things are no longer useful anymore. My umbrella had weathered one too many wet and windy days. Over time the wires became bent and the once perfectly symmetrical red dome was now lopsided.

Of course my love for my umbrella over ruled any need for usefulness. I would carry it out with me, broken or not. But my mother did notice and told me it was time for my beloved umbrella to be thrown into the trash. I watched her, heartbroken, as she carried it outside for the garbage men to pick up the next morning. I felt such sympathy for this inanimate object. How would I feel if I were taken out to the trash after being so loved for so long? I imagined the sorrow of feeling alone and unnecessary, and it was then that I decided to rescue my umbrella from certain demise. I did go out and retrieve it, hiding it into the back of my closet. Although it would never shield me from one more raindrop, I was glad to have my umbrella back with me.

Decades later I still feel a particular empathy for broken objects mainly because I feel broken too. For years upon years I have not had any major health problems. I have never had a broken bone, not even a sprain. I had rarely experienced the inside of a hospital except to give birth to my two boys. I never worried about my health and it was something I took for granted. But now things are different. I have been diagnosed with Multiple Sclerosis, this mysterious disease which causes ghostly symptoms to come and go. One day I may not be able to walk well. On another I may feel weakness in my hand. On yet another day I may not be able to speak coherently or keep my balance while standing. The course of my disease is unpredictable and therefore frightening.

What does it feel like to have MS?

I have to say that one of the first images to come to mind is my broken umbrella from so many years ago. There are days I feel broken. This is something I do not like to admit to myself. There are things which may not be fixable. But it is more than a physical phenomena, this "broken" feeling is quite emotional. Everyone has a way of thinking about themselves which does involve this flesh and blood house we inhabit. I read something recently about someone saying that we are not our bodies. The article I was reading was about weight and body image. But if you extend this philosophy you could include overall bodily health. I thought about this for awhile and then concluded that this statement is only partially true. Yes we are greater than this body we must dwell within, yet there is no escaping the fact that we are biological creatures. Everyone, regardless of who you are, will experience a decline in physical functioning. Even our brain, which acts as guardian of memory, intellect, and emotion, will someday enter a phase of gradual demise. Age is the great causal factor here, but for some who happen to have neurological disorder such as Multiple Sclerosis, loss of some functioning is going to happen a lot sooner. In many respects we are our bodies.

After some time has passed since my diagnosis last October I have had a lot of time to think about such things. I wonder about my usefulness. I am not the same as I was. There is an undeniable emotional loss to this fact. I can no longer do all the things I used to do with ease. I must think beforehand. I must plan. Spontaneity has been replaced with trying to determine the exact point when my body may rebel and begin to collapse. I must think about weather now and particularly heat. I must think about adaptations should I be unable to walk or talk. I worry about my children and if I will be able to keep up with them. I worry about the future and if I will recognize myself in years to come.

Despite all of this, I do feel I can handle whatever comes to me. I can adapt. I have no choice really. The physical part of this I can endure. It is the emotional aspect of having this disease which seems harder to bear. I am a little broken. I feel if I tell myself the facts with no denial, that I will be better able to accept this. I am worthy despite my limitations. I am not about to throw my life into the garbage because of this disease. Unlike my childhood umbrella, I am not a disposable object to be tossed aside when my body fails me. Broken or not, we all deserve to be loved for who we are despite our perceived usefulness. Pity and sympathy have no place here. I have left mine in the closet with my umbrella.

A Health Diary

When I attended a conference some months ago about Mutltiple Sclerosis, one of the talks was about the creation of some sort of Health Diary. I thought it was such a good idea, that I thought I would pass it along here. It is common sense really and I bet a lot of you are already doing this if you have any chronic type of condition whether it be a physical or mental health issue.

I usually just write things on my wall calendar and then I went from that to stuffing items into a manilla folder, but today I went out and got myself a three ring binder which I will be filling with information. One of the presenters at the conference went so far as to use spreadsheets but...lol...you might not want to be that "organized."

Make sure to keep track of time lines...when conditions began...when symptoms first appeared, any pertinent information which you may need to present to your doctors. Keep a list of all your medications, dosages, etc. Also keep any records from the hospital such as MRI's. I have my latest ones on computer disc which is nice...much easier to tote around than the big 'ol scans. For women...keep track of the first l day of your last period...any changes, etc.

Regardless of what conditions you have...I just think this is an excellent idea. Sometimes when you review, you can see patterns of illness. This is a great idea for mental health issues as well...such as how you are handling any medications and if there are any patterns to your mood changes.

Never thought much about my health before but boy am I now! Wish I had done this years ago. For me...my first MS symptom was over ten years ago and it is hard now to remember the details. All I know is that I had optical neuritis and had an MRI. I couldn't tell you the doctor's name or medication used.

So anyways...you never know when you might need this information so write it down!

Do you guys have any other points to consider about recording your health information? How do you guys stay organized?

if it's not one thing it's another..

went to the doctor today...i thought i must have a urinary tract infection as...i feel pressure to go when i have just gone. something is definitely wrong but...they didn't see anything from their little test. i did get antibiotics though.

is this just the beginning of these sorts of problems related to MS?

asked my gyne if he thought that this was MS related and he felt it was too early for this to happen. i suspect he is wrong.

can anyone tell me more information or tell me of your experiences with this? i just want to cry...i was so sick and now add this...it is like come on.

i just want to feel well.

wanted to add...actually he did see leukocytes? how do you spell that?

No use for toes

Okay so I will never be a ballerina.

Mostly my toes get used for lifting me up so I can see better in crowds as I am on the short side. Five foot two, eyes of blue, koochie koochie koo. Other than that, my toes don't serve much purpose other than peeking out from summer sandals.

A lifetime ago I actually did take a ballet class. I was a teen who always wanted to learn something new. I had absolutely no apptitude for dance but I looked upon it as a challenge. Forever a klutz, I thought that a ballet class would teach me grace. It was not to be, however, as this duck would never turn into elegant swan.

I remember the dance teacher coming around to give pointers and sometimes to grant us a compliment if we were found worthy. I grew weary of hearing the praises given to the other girls as the instructor would pass me by. The one day she paused before me as I was poised before the bar,and she gave me a gift. "You have very good balance," she decreed.

On the way home from class, I glowed. "I have good balance!" I repeated to myself. Me, the eternal klutz, had a newfound image of my body. Maybe I couldn't move with skill or grace but I could hold a pose without losing my balance. That was good enough for me.

My moods and interests quickly turned to other things...jewlery making classes...writing...and boys. My little pink ballet slippers found their way to the back of my closet.

Now here we are decades later and my toes have a different tale to tell. I am still very much a klutz but now I have a reason for my stumble prone nature. I have Multiple Sclerosis. One of the first symptoms I had felt prior to my diagnosis was a tingling and semi-numbness in my toes. That is where it began. Such a slight symptom, barely noticeable, but definitely there.

And balance? My old dance instructor might be dissapointed. I have lost my sense of balance. There are days I could not pass a sobriety test, not because I am inebriated, but because my lack of balance is yet another symptom of my MS.

It seems that the toes can be one of the first body parts to be affected by Multiple Sclerosis. Indeed one of the first symptoms many MS patients report as I did was:
"A "pins and needles" prickling sensation most often in your toes or fingers - like your foot or hand fell asleep"

There is also a reflex in your toes which may indicate neurological damage:

"Babinski's sign: A test for signs of disease process in the motor neurons of the pyramidal tract. The test involves drawing a semi-sharp object along the bottom of the foot. The normal response in adults and children is for the toes to reflex downwards (flexor response). In babies and people with neurological problems of the corticospinal tract, the big toe moves upwards (extensor response)."

Before I was officially diagnosed I could be found at home testing my own self for this Babinski sign by using the end of a pen up my foot. Come on...admit it...you did this too. Okay so maybe it was just me. My toes did funky things but I was never sure if I truly saw the sign or not. Self neurological testing at home...not for the faint hearted or easily confused by the directionality of toe movements.

So what was I saying? Oh yes...I will never be a ballerina. This was confirmed by my neurologist, who after performing real doctor tests in her office chided, "Well you are no ballerina are ya?"

And you know...I am okay with that. My toes are just fine about hanging out in sandals or comfortable sneakers. They have had their day in the sun and could wish for little more. Perhaps one day I will break down and treat them to a pedicure. I think they deserve it, don't you?

What kind of Multiple Sclerosis Blog Is This???

If I can categorize all of the "dealing with some disease or disorder" blogs into two extremes, there are the "I can climb every mountain" memoirs and then there are the "Gather heather for my hair because I wish to have a dramatic movie moment" kinda blogs.



Then there is my blog where I barely talk about my disease. I know...I need to get with the program. I really do need to start talking about all those things that I never did before like mountain climbing and how I simply must start doing them now that I have Multiple Sclerosis. Let's add on hang gliding and how about I add on lion taming just for the hell of it. Then I can make motivational speeches across the country of how I have conquered my MS and YOU CAN TOO!

Mind over matter right? And just think positive! This MS thing...why it is just a fig newton of your lively imagination. Having symptoms? Having a bad day? You slackers! Just will it away and have a bright and superduper sunny day!

On the other extreme lies the gloom and doom side. Everything is rotten. Nothing to be grateful for. The world owes me dammit! I have a disease! What? You say the world and its inhabitants don't suck eternally? Damn you to hell for negating my world view! Everyone else...they have it easy. I am alone in this uncaring world. Nobody understands my paaaaiiiiiiiiiin. I am the only one who has it this hard because I...I am so special to have all of the world's hardships and difficulties on my frail little shoulders.

"Nobody know....the trouble I've seen.....nobody knows the sorrow."

Okay so I am being a wee bit melodramatic myself here. Seriously....most blogs about dealing with health or mental challenges fall in between these two extremes. Most folks just simply write the truth of their experience as they see it. Most people who are dealing with rough times are coping day to day the best way they can. And sometimes you vascilate between the two aforementioned extremes. Sometimes a little Pollyanna doesn't hurt and sometimes you do need to vent and get it all out.

Nobody....I mean nobody...said this would be easy.

When I have my small bouts of symptoms...not being able to walk, not being able to talk, hell...not being able to think....I am reminded that...I ain't seen nothin yet. Sure...there is more to come. I know this. But I absolutely don't want to talk about this all day long. I am going to say something....possibly...offensive here but...having a disease...is dreadfully boring. If I want to keep any of my friends I cannot be sitting around talking about my MS all day. I am more than this disease.

I have MS. MS doesn't have me.

Yes I want to talk about it. That is why I have this blog. But I don't want to limit myself to just talking to other people who have MS. I refuse to barricade myself like that. It isn't healthy.

So my readers will have to excuse the fact that, while I do have a blog about MS, this site is more about.....me.

Now gather me some heather for my hair before I climb that mountain. Oh wait...maybe I will just stay here....and talk to you. Yes that is exactly what I will do.

Coming out from hiding...

I find myself in need of talking. And somehow I find this more do-able for me to express some things here...things I have trouble expressing personally face to face or in letters. I just find this "public anonymity" easier on me. I am hiding. Forgive me. But this is for me.

I am feeling a bit troubled lately...things are brewing inside and taking shape. I feel as though I am standing back to watch the process. There are emotions to deal with but I want to isolate them and place them into vials with my gloves on. I do not want to touch them yet.

Went out with a friend a couple of weekends ago. She asked me how I was doing and I told her I was doing pretty good. I wasn't about to get into the details of my new illness. As with most folk, when I say I have MS, the other person will invariably say something about knowing someone else with MS or seeing someone and having that "aha" moment of recognition. My friend began telling me of a woman in the neighborhood who has MS and how this woman is walking around with a cane. My friend added that this woman seemed to be "too into it" though. My friend felt this individual was putting on more than was real. I didn't probe. I didn't want to. Was it the cane? Was it because the woman maybe asked for help? Were my friend's perceptions because this person's disability was more visible?

At any rate the conversation went on but my thoughts stalled for a bit. I had to put that bit of dialogue away because I didn't know what it meant.

The thing about me is that I hide. I definitely hide my depression. I have tried to hide that for years. I have fought so hard to not be my mother...the mother who would lie in bed, sometimes seemingly semi-conscious for days on end. I don't blame her. I forgive her. She had/has far more impairments than I, but my god I don't ever want to be her. And I feel guilty for saying it but it is true.

Ask anyone who suffers from (guess i have to include this descriptor of clinical here) depression, what hell a normal day can be. I have had days in the past of working full time and then going to grad school and holding back...holding in...for twelve or more hours in the day until I could go home and cry or scream in the shower. I remember writing a paper in grad school which was due....and I was in a bad way...the papers were strewn around me in a semi-circle and I was crying so hard I was almost vomiting. But I didn't stop doing. This was no heroic thing...believe me...it was just me trying to survive anyway that I could. Sometimes that means being a robot and proceeding with tasks you have no energy to do.

But when most people were/are around, I can't cry. I can't show that. And that part is lonely.

The thing about depression though, is...it isn't this group of people wailing and crying. Depression is more...insidious. It is like when you go out on a frigid cold day but it isn't quite cold enough for snow and it is raining. You get caught in that cold rain and it seeps right through to your bones. And anyone who has felt that, you know how hard it is to get warm again. It is like that with mood...it seeps in and stays and stays. To be able to actually cry is a miracle. Mostly you just feel rather numb and inert. And how does one adequately describe that feeling to anyone? So you keep it to yourself.

Back to my friend's comments. Again I felt the instinct to hide. I can play some kind of hero I suppose if I don't talk about my MS. People can say...yeah I know a lady who has it and she is just fine. And I am...I think. For now. I don't know.

I was in a school supply store this week. I was shopping for learning supplies for my youngest son when "it" happened. I don't talk about "it" very much because...well...because...I am afraid. I am a lily livered chicken shit. I want to pretend that this isn't happening. I want to make it go away. But okay I am gonna confess that it happens way more than I ever let anyone know. And I am sorry but that is the way I have to handle this for now.

So I will leave my confession here.

Yeah I was having trouble in a store. lol It is like I tell myself if I can just keep this MS contained in private...when nobody is around...I can deal with that. I have spent my whole life with people staring in my direction for various reasons. First it was my schizophrenic mother who would talk to herself and gesture wildly in public. Sometimes she would get so angry and paranoid she would begin to cuss at strangers. That went over real well in the inner city. Then in my adolescent years I had a boyfriend who was a drug addict who would have no fear of acting out in public. He would do things like carry me to a garbage can and put me in it. I chose a career where I attempted to help those with multiple disabilities. I had many community outings where my folk would spit, holler, jump up in the air, flap like a bird, and even pee themeselves in public. And now I have a son who has special needs who has on ocassion rips off his clothes, screams, knocks over glasses in restaurants to watch the water spill, and the list goes on.

You would think that I would be used to this shit. You get over it fast when you are trying to help someone else. I am downright belligerent and in your face if you stare at someone I am with.

But me alone? Hell no. I don't want to be noticed. I want my quiet times where nobody is staring. I want to be invisible when I am on my own. I want to blend in. I want to pretend I have this normal life I have never had. I remember the first stare when I was coming out of Target one day. I had the MS pegleg thing going on. My right leg stiffened up and I tried to stop it but...you can't. I saw eyes on me and...I quickly hobbled away and out of sight.

So just recently as I was saying...I was having symptoms in that learning store. And my first instinct was to hide...which I did semi-successfully behind a cart. I wish I could be one of these folks who, upon learning of their disease, gets bumper stickers and proudly proclaims "I HAVE MS!" and have no qualms about being visible. And to some extent I am that too. I have this blog. I want to share. But in public...I...

I don't want pity. I don't want people "helping" me. I don't want that kind of attention. It makes me so mad. My friend hurt me with her insensitive comments. I love her but she hurt me. One day that could be me with a cane. I will need help at some point. I will be visible.

This is all a process. I am new to this MS stuff. Just think...less than a year ago...the word was not in my vocabulary. I didn't think about. I didn't have to. But now I do. And when I don't...someone reminds me. "It" reminds me with symptoms.

I do want to say this before I get reactions I do not want. I AM fine. Truly. My symptoms are not that bad. I function so very well. I am just...coming to terms with this and...I wanted to talk about it. That's all. I just want to talk.

And so I have. And it helped.

What me worry?

I have been pondering myself lately. I feel I am doing well with the whole MS thing. There is so much more to write about and especially about the synchronicity parts!

Maybe this is strange to say but I have kinda been here before. I have already dealt with a diagnosis for my youngest son...for his special needs some years ago. In a lot of ways the MS diagnosis felt similar yet....there has been some huge differences...in me and how I am coping this time around.

When I found out my son had autism, I poured myself into research. I did end up appreciating personal accounts the most, but...man did I reasearch as well. I could now say that I am some kind of expert over these years of reading and researching. All I could think of was...this is my baby...I gotta save him.

But now for me...well...initially I researched with the same frenzy when I wasn't sure what I had. I am now very good at researching...thank god for the internet. I can find information very fast and also make sense of most of it. But then a weird thing happened after my official diagnosis....I stopped reading and researching. I stopped visiting an MS on-line support group. I knew what this was and...I didn't/don't want to go any further right now.

Perhaps it is a bit of willful denial? Or perhaps I know that I need to conserve my energy for the long haul. I also know there are no easy answers...no cures...and becoming obsessed with all the research isn't so healthy. Least not for me.

I guess I am not sure what I am feeling. This is such a crazy disease. Sometimes you feel MS symptoms and sometimes you don't. Maybe I am stupid but I am imagining it to not be so horrible so far. But yet I know that it can be. I know it is unpredictable. I have lived in fear so much of my life. I would kinda like to save all that energy for other stuff...like enjoying my life! I don't want to stand around helplessly wringing my hands saying..."oh dear oh dear...what horrible things will happen to me?"

I am not worrying, or fussing, or moaning. LOL...what is wrong with me? I am worried that I am not worried. Maybe it is because I have faced so many unbelievable things in my life...I am like...okay bring it on. And maybe too my complacency is due to...it is me this time. If one of my family members or friends just got diagnosed with MS...I would be researching into the wee hours every night. But it is just me and I stupidly think I can handle whatever comes.

Don't worry... I am not that naive...I know that this disease can and probably will knock me to my knees. Matter of fact...it has done that already. It will knock the shit out of me. I will be humbled. I will most likely beg for mercy. But honestly my moods terrify me more than MS.

You know what else it is? I think it is finally hitting home for me that I don't have control over everything in my life and...I can't expect to. This MS thing is forcing me to let go...make some peace with myself...and to be grateful for the moments I do have.

Leave it to me...I worry about not being worried enough.

Everybody does

I think it is time for an MS post.

I was thinking back when I first told my friends about my diagnosis and trying to explain symptoms. One of the responses I would get back was, "oh everybody feels/gets that."

Me: Sometimes I just get so fatigued.

Well meaning but idiotic friend: Everybody gets tired. I am tired all the time. Maybe I have MS.

Me: There are times I am off balance and feel like falling.

Well meaning but totally clueless friend: Oh you are just like me...I am a total klutz.

Me: Sometimes I just can't funtion mentally, I am forgetting things I usually can remember.

Well meaning and quick to becoming extremely annoying friend: Everybody does that. Why just the other day I forgot my car keys.

Me: I get pain and spasms in my muscles.

Well meaning friend in need of a bonk on the head: Everybody gets those. You are just getting old...we all are. You are just more prone to aches and pains now.

Me: Sometimes I drop things when my one hand goes weak.

Well meaning friend: Oh yeah...that's me too...I think it is my hormones.

Me: There are times when I am not able to coordinate my movements to walk.

Well meaning and never gonna get it friend: How can you forget how to walk? You just put one foot in front of the other. It is just mind over matter. And everybody is a klutz at times.

*sigh*

Everybody is? No...not really.

MS conference Part deux

Yesterday I attended an MS society conference and I wanted to share what I learned there with you all. This is a continuation from yesterday. The second part of the conference was the most fun and was one of the main reasons I went at all. We got to learn some Tai Chi.

I have always been fascinated by martial arts and especially Tai Chi. I have only taken one itty bitty class in it so I really know nothing. I love to try to challenge my body so thus far I have taken: Tae Kwon Do, the Tai Chi class, ballroom dancing, shag dancing, and belly dancing! I can say with pride that I suck at all of them! Heh! I have always been uncoordinated and clumsy with or without MS but it doesn't stop me from trying and having a good time.

Anyways...this little session was special because she tried to gear it a little for folks with MS. Whoever could not stand, could remain in their chairs and do the movements they could do. Actually we all started off sitting and began with loosening up the joints. What particularly felt so good to me was the shoulder one. All we did was roll them forward and then back. I thought to myself, "I gotta do this more often."

I found a small video...not of what we did exactly....but some warm ups nonetheless. I will put it at the bottom of my post here.

We did a little of the forms and I as always...I was amazed by how graceful and fluid the instructor's movements were. And powerful too. It doesn't seem that such slow methodical movements are part of martial arts but as she explained...it is like all this great energy coiled up...ready to spring. You are doing so much when you do the movement slowly. It is like with weight training...I see all the folks at the gym moving so fast...trying to get the reps done but really...if you slow down a bit and feel the position and form of your muscles...you can do a whole lot more. Try to do a squat slowly...it is a whole lot more effective.

I also like the slow movements of Tai Chi because they are a symbol for how you may lead your life...with conscious focus and direction. Life doesn't have to be a blur...you can slow things down so you can feel the process.

It was just a flavor of Tai Chi really...but enough to whet the appetite to want more. I found the stretches and movements very pleasing. It all felt good!

So here is a little video I found. And if anyone knows more about Tai Chi...tell us about it because...I would love to know more.

What I learned at an MS conference...

Hi y'all!

Today was a busy day...went to my first MS conference. This is how I deal with things...I dive in and learn everything I can. This little conference I went to was sponsored by the National MS Society. And my consensus is...they really go out of their way to help folks with MS. Moreover...the conference was totally free including snacks and lunch.

I couldn't help but compare this conference and just how well I am treated with conferences concerning children with special needs. As there is no medication for treating autism or mental retardation and...the population is children...sad to say but there is less out there for them. At this MS conference the people for Capaxone were there peddling their wares, so....yeah I am guessing that there is more money and resources for MSers than for children with autism. But that is just a general feeling I get.

Anyways...I thought I would tell you what I learned there and possibly how I might apply this knowledge to my own life. Let's face it, most conferences are not life changing. Maybe you get a glimmer of hope or an idea that you can use but for the most part...they are so generalized that most of it can be condensed into an hour of time or less.

I am biased. I have been to a lotta conferences. I am always hopeful to learn something new...even if it one thing...then it is worth it.

I stayed for three lectures so I will do this in three parts as well and add my two cents worth!

For my friends who don't have MS...stay anyway....because these idea may be useful to you too.

The first lecture was about empowerment and goal setting. Now this was a little commonsensical to me as this was a big part of my job working in the human services field for so long. I can write a goal just about anything! Task analysis...I am there. But it was nice to be reminded of what you can do. I love talking about goals as it is right up my alley as I am a bit anal. I am one of those people who write goals for themselves for the year, for the month, for the week, and for the day. I cannot function without goals. I personally thrive on having a focus and a direction and what's more...this keeps me happier.

I am doing my best when I get to check something off my to-do list.

So what was said?

Locus of Control. The speaker talked about how people who have an internal locus of control do better at managing their illness than those with an external locus of control. Basically what this means is that the person who has an internal locus of control feels in control and personally responsible for their goals and actions. The person who has an external locus of control believes that outside forces are the reason for their dreams and actions. The person who has external locus of control will not be their best advocate for themselves as they will go along with whatever the doctor or family or others have to say. The person with external locus of control can be more of a victim. Things "happen to them." They feel they have no control over their life. The person with an internal locus of control believes that there are things they can do to help themselves and they feel responsible for their own choices.

Of course, the normal person probably vascilates between the two.

Me? Although I am a depressive, I like to think I have the internal locus of control. I know about being an advocate and I am not afraid to stand up to authority figures, family, friends, etc. to make my own choices.

Bottom line...I am responsible for my life. Nobody else.

Onto Setting Goals:

1. Realistic and specific: One of the big problems with setting goals is coming up with a goal which is concrete and do-able. Okay so you want to lose weight and have more strength? What exactly does this mean? A more specific goal would be...I want to lose 30 pounds in 6 months and be able to bench press a set number of pounds within that same time frame.

2. Small steps at your own pace: I remember when my sister's husband had a heart attack. After he was doing better, his doc told him he had better start exercising. The man had not exercised in at least a decade or more. He couldn't even envision it. It would be easy to state a goal of running on the treadmill for 30 minutes or more but this would be highly unrealistic and would needlessly frustrate him. My sister helped him by telling him that his goal was to walk on the treadmill (at a brisk pace) for five minutes. This is where he began. And now he is running and doing all sorts of exercise. But he had to start small.

I say...start with what you can already do and add on from there...building from your success. Do five minutes....then build up to ten...and so on. You do not need to do the whole enchilada right off the bat!

3. What are the most important reasons to change? This is a good question to answer. You gotta know because otherwise...the change is gonna fail. Don't do it because someone else thinks you should. Do it for you.

4. Where do you go from here? These are the lecturers questions. I would add these.

a. Where are you right now? What is your baseline? If it is weight, strength, stamina...be honest about where you are. If your goal is to spend more time with friends....how much time do you spend now? And so on and so forth.

b. Where do you want to go? This is where you write down your goal in specific terms.

c. How are you gonna get there? What methods will you use? Do you need any materials? Do you need supports from friends or family?

d. How will you know you have gotten there? What method of evaluation will you use?

5. The speaker also added: How do you envision the outcome? This is motivating but...I would have to say...please do enjoy the process. The outcome may not happen as you envision it. It is depressing to place conditions upon your happiness as in..."I can only be happy when I lose thirty pounds." or..."I will only be happy when I finish my novel." or whatever your goal may be. I feel it is more mentally healthy to say..."Hey...I gotta big rear end right now but I can still be happy." LOL You know what I'm saying?

Lastly...here is the worksheet she gave us for making changes:

1. The changes I want to make are:

2. The most important reasons I want to make these changes are:

3. My main goals for myself in making these changes are:

4. I plan to do these things to reach my goals:

5. The first steps I plan to take in changing are:

6. Some things that could interfere with my plan are:

7. Other people who could help me in changing in these ways:

8. I hope that my plan will have these positive results:

9. I will know my plan is working if:

Sources: Miller and Rollnick, 1991; Miller er al., 1995c.

I have a lot more thoughts and ideas on this topic but I will save them for another post. And I still have two more lectures to tell you about!

More to come....you betcha!

On the same wavelength...

I want to talk about an MS symptom. This is one that I experience a lot and I am gonna try to explain it the best way I can. I really would like to know if anyone else has experienced this and...what do you do with it?

There is brain fog...the slowing down of reactions and cognitions. Then there is feeling off balance. But the symptom I am going to talk about exists somewhere between those two.

There are times I feel as though I am in an altered state of consciousness. Maybe I am describing "brain fog" but I am not sure. It feels as though I am on the way to passing out but I don't. I almost wish I would so that the feeling wouldn't linger and would have a logical conclusion. I am not quite alert and not quite out. I get into this limbo state which isn't entirely unpleasant but it isn't a place I want to be for any length of time. I have never done drugs but I imagine it to be a similar experience. Sometimes when it takes me over I find myself staring. At anything. One object or stream of light or shadow becomes my focal point and I feel so absorbed.

It isn't like when you really feel like passing out as in...room spinning, clammy, sweating, sick to the stomach. It isn't like that at all. Yet I definitely do feel altered and I have been wondering if I will lose consciousness in this state. It seems to proceed the brain fog....where I can't think clearly or quickly....and sometimes it comes before my losing balance and falling....and it definitely happened before I lost my ability to speak that one summer day.

I guess I am focused upon this symptom because it seems to come before all others. It is the feeling I get when I know more symptoms will begin. And I worry that I will pass out. But if it isn't so harmful and I know that I am actually not going to lose consciousness...well...maybe I will just go for the ride of where my mind wants to go.

I am still getting used to all of this MS stuff. This is all new to me. You think you know your body well and then you wake up to these alien feelings and sensations.

Has anyone else experienced this particular symptom and...how do you deal with it?

Not like TV

I don't know if any of you watch Desperate Housewives. It is one of my guilty pleasures. If you haven't been keeping up or have no idea about the show there is a character named Lynette who has been battling cancer this season. Complete with bald head, she enacts what it is like to be a cancer patient and takes us for the ride...albeit a short ride lasting as long as a handful of episodes.

In a previous episode we see Lynette's rage over a possum left to damage her garden when she is too busy with chemo treatments. She is so angry that she even wants to get a gun to shoot the varmint. I think in the end rat poison does the trick. The anger over the possum is just misplaced anger as she yells about the "invader" who is trying to ruin her family's home. This invader, of course, is really her cancer.

Her oncologist comes to the door one evening (now this is truly TV fed fantasy here) to tell her the news that her cancer is gone. She takes it all in and rushes outside to her garden and spreads her arms wide to the night sky and cries. It is all over. Unfortunately, Scruffles, the possum is all over as well....finally lieing dead in her garden. Lynette tells the dead animal she is sorry.

It was an emotionally moving scene despite the apparent silliness of it all. Stealing a scene from Caddyshack and implanting it within a tale about cancer...it was clever enough.

I was more moved by it, however, as I have a friend who has breast cancer. She is still going through the long process of chemo and the latest is, that she can hardly feel "Fred" anymore. Fred is her nickname for her tumor. And I must say, I cannot imagine what all she is going through. I can only stand by and watch the evolution of the conquering of her...invader.

After that particular episode of Desperate Housewives aired, I had a little cathartic cry.

I thought about my own disease. Whereas cancer can be vanquished and gotten rid of, Multiple Sclerosis cannot. There is no cure. There will be no triumphant opening my arms to the night sky and feeling grateful that this is all gone. The reality is, that my MS will never be gone. It may be stalled somewhat, but more than likely it will progress despite all our medicinal advances. No experience can be compared to another, but nonetheless it is human nature to do so.

My reality is that I will most likely never get better but I will gradually get worse. At best, I will remain as is but I will never be as I was. I will have Multiple Sclerosis for the rest of my life.

And I know that this is the same reality for many of us with MS. And a stupid TV show allowed me to cry about it.

Strangely....I am feeling more okay about all this. I will need to accept before I can move on. Maybe I won't have some made for TV victorious moment, but I can still enjoy all the very real moments I do have, despite my disease.

And I have no desire to kill a possum or groundhog as the case may be.

What a week!

I do promise to be a fully functioning human being again. I have much catching up to do and writing letters. I will probably have some time this weekend to comment and correspond. I miss you guys!

Oh me oh my! Oh my oh me! Oy gevalt! and Hooo weee!

My brain is on overload. Too much to process.

I have many decisions to make it seems. To do nothing is also a decision.

I absolutely do need help and feedback. I will most likely end up doing all these things I will tell you about but I may wait on some.

I actually began to talk of one item on my list on an MS support group list and...I just had to take a break because some of the comments I received were not so supportive. So be gentle with me.

Ahhh the wide world of medication!

I am new to all of this. And make no mistake...I am afraid. I don't want to have MS. I am thinking some good old fashioned denial may be in order. But well...okay I have it. There is no going back. I even tried to shamelessly wheedle a different answer out of my neurologist today. The conversation went something like this.

Me: "So there is no way that my lesions could just go away?"
My doc: "Nope. Looks like they are are here to stay.
Me: "So there is no other cause for my symptoms and MRI findings?"
My doc: "Nope. Everything is indicative of MS. We have ruled everything else out. You get the official diagnostic #340 code."
Me: "You want to talk about meds again don't you?"
My doc: "Yes it is time to talk about treatment again."

See...thing is...I um...had put off the whole meds thing for some months. I wasn't ready. And now... I AM STILL NOT READY!

There...I said it. Please don't guilt or shame me. I know I am lucky to have a milder course of this right now than most folks. I know I am so terribly lucky to get an early diagnosis. Thank god I will not be kept in limbo about all this as some people have for months and years and even decades. I know I am fortunate to have drug choices that people didn't have in years past.

I know.

But this still is such a big decision and I do need to think about it and weigh all the pros and cons.

It is more than fear which is hindering my decison to take meds. It is also the rate of efficacy for any one of the drugs. Let's face it...the efficacy rate is low...30% for most of them. Those are not good odds in my book. Possible liver damage? Needles? Being sick all the time? And...oh by the way...it might work...it might not.

So basically I gotta be sick now in order to not be very sick in the future.

My tricky neuro got me to sign something to get the process started. My insurance needs to approve this very expensive med so we got that started. A nurse is supposed to show up to show me how to do the shot. I told my doc that I am still not at all sure about taking Rebif yet. I was re-assured that I can decline taking it but that of course, I would need to inform her.

She gave me this nifty cardboard Rebif suitcase of information. The picture on this rather tacky box shows a couple who are balancing on rocks and smiling into a sunset. Mmmmmhmmmm....yeah. Gee...that is exactly how I feel! I want to all of a sudden take up hang gliding, rock climbing, and jumping out of airplanes!

Oh...I...just really don't know what I will do.

Anyways....

Number two concerns my mood. This MS is kicking my ass in the mood department. I am normally a bit emotionally volatile. Those who know me are probably smiling...uh...yeah...just a bit. But the MS has made my moods fluctuate even more wildly. And I pride myself on being a fully funtional person who suffers from depression but lately...it has been very hard. To say the least.

I have only taken an anti-depressant once before...I was in my twenties...I had a miscarraige...was going to grad school...had a full time job...tons of pressures in addition to the biological/emotional depression caused by losing a baby and...I reluctantly agreed to taking an SSRI. I got off of it as soon as I could.

I am not anti-meds. I worked in the field of human services. There are times when such drugs save lives. I know that. Yet it has always been my own bias for myself and nobody else that...I could always handle whatever comes without using meds.

But now...knowing that between my own biological disposition towards depression with the addition of MS causing physical problems related to mood....AND if I do decide to choose to take Rebif...this medication also can cause depression....knowing all of this...

I am waving the flag of surrender.

Okay maybe it is time to try something.

Zoloft. I got a prescription for Zoloft today. We will see when and if I take it.

Add to all of this, I decided to take my youngest son who has autism to see a neurologist as well. He is nearing adolescence and he has been experincing his own rollercoaster of moods. I have never taken him to a neuro before. We left with a prescription for Prozac.

I am always a latecomer to everything. Now that I am finally receptive to thinking about meds...seems there is a backlash against them.

Okay...lay it on me. What are your thoughts, opinions, advice, and experiences?

In summary:

1. Should I try Rebif? Now or...maybe wait? My MS is not progressing so far. No new lesions and they have not grown in size these past months.

2. Should I try Zoloft or opt to find more natural treatments?

3. Should I try Prozac for my son?

The Human Pin Cushion

Is it Thursday already?

I am totally allowing time to escape me.

Yes Monday I had my MRI, this has been my fourth in my lifetime thus far. And it is best if I get used to them. The very first one I had was ten years ago and I was claustrophobic and fearful. I have totally gotten over that part. What has been problematic recently has not been the time in the machine but the injection of dye for contrast.

Last time the person doing the IV messed up somehow and my arm was burning for more than an hour afterwards. I have no idea what she did to cause that reaction.

So this time as I was being led to the machine that goes ping, I politely asked them to prevent that problem from happening again. This must have been interpreted as to cause me as much pain as possible.

The tech guy setting up my IV was nice enough, engaging in the small chit chat that most hospital folk do when they are doing unthinkable things to you. But man was he inept or inexperienced at doing an IV. The other times I had contrast, they would bring me out of the machine and set me up then. This time they wanted to hook it all up beforehand to save time. Believe me...this was no time saver.

Now I am not fond of needles but I have certainly had IV's before and so I just closed my eyes and let him do his thing. Then I felt great pain. He was jiggling around in my vein. I *knew* something was wrong. He then proclaimed, "Wow that is going to hurt a lot later!" I had no idea what was going on and didn't want to look. He was acting like we were both a witness to an awesome phenomena. He added, "Man...your vein is just puffing out like crazy...want to see?"

I was...a little scared at that point.

Here I thought he was finished with me when I find he is going for another vein in the other hand. I almost muttered out loud, "Oh dear god no!" But I didn't dear reader. I sucked it up and dreamed of when this mutilation would end. So he does the same damage to another vein and the more his wiggling around in there...the worse I am beginning to feel. That day I felt dizzy to start because of my MS so...yeah...this was not fun. The evil tech guy then told me that there was a little blood. I peeked and saw a big blotch of blood on the gurney. I think it was then that I began to feel downright woozy.

He told me that he would have to call the "stick team" to get into my veins. Seems I have tiny veins. Hey...I am a petite woman...I can't help it if my veins are small and they should know how to do this sort of thing without causing injury.

I was led towards the MRI machine and told that they would just have to inject the dye in between scans. I was barely able to walk at this point and I began to get that clammy sick to my stomach before I pass out kinda feeling. Of course this was a further hindrance to their schedule. I fell into a chair and told him that I was not going anywhere. I told him that I might throw up and he casually pointed to an out of the way waste basket.

While I was still trying to maintain the dignity of not tossing my cookies, he was asking me what kind of music I wanted to hear during my MRI. I winced in desperation. I wasn't exactly caring about music right then. Actually I considered running out of there! But I didn't and he pressed on for an answer, "You know...what do you listen to on the radio?" I whimpered, "Contemporaryyyyy"

I finally felt better enough to go lay down in the machine. I thought I only had to do a repeat of my brain scan but I learned right before going into the machine, that I also had to do a repeat cervical spine scan. I audibly sighed.

Before going in, the "stick team" came to puncture me once more. The stick team consisted of one overly jolly nurse who I prayed was competent. The evil tech dude told me that she was even better than he was, and that he was pretty damn good. Right. Yes he was possibly better than a trained monkey set loose with needles. This nurse had trouble finding my veins too. She even asked me for help, "Do you have any good veins that you know of?" Gee...yeah I will give you a diagram next time. I was about to plead for mercy when she plucked my arm like a banjo to find a suitable vein. This time she said out loud, "I can't tell if this is a tendon or a vein." At this point in time, I should have just gotten up and left. But I didn't. Turned out that she did find a vein. The evil tech dude asked if she needed a "four" something or other and she told him, "Oh lord no, we need a two." So if I could interpret that correctly, he had been sticking something way too big into little 'ol me! Hmmm...that sounded kinda funny there. Get your mind out of the gutter!

Finally I could go into the machine to start the scan. I relaxed somewhat, knowing that the needle torture was finished for the time being.

I left the hospital with three bruises, one was swelling to golf ball sized proportions. I was granted an ice-pack which I was told would only be helpful for about five minutes. The evil tech guy admonished me that he hoped never to see me there again. Oh likewise buddy. The feeling was totally mutual.

Now I wait for results.

Are we having fun yet?

More thoughts

Bubbie's last comment has really helped me to understand things.

Several entries ago I wrote a quick and dirty post which I gave very little thought to. In my encounters on the one MS on-line support group I belong to, it is quite common to talk about symptoms and to list them. The thing is, however, that most of the people writing these lists are in the initial stages of finding out or having just found out that they have Multiple Sclerosis. Some members who have had it for decades might also post about their symptoms but more as a way to help the newbies as far as making them feel like they aren't going nuts. Something along the lines of yes I have experienced slurred speech and falling down too and here is what I do to manage these particular symptoms.

But my blog is not a support group. It is a place for me to share my thoughts with you all and I have a diverse readership here. No it is probably not fun at all for any of you having MS for some time to list your symptoms. And it is most likely very painful to do so.

I just want to say that I am so sorry for being insensitive. And thank you Bubbie for graciously and honestly sharing how you felt. This helps me a lot.

The whole "positive thoughts" thing just hits a sour note for me and I am trying to figure out why. I suppose it is because I am feeling particularly powerless right now.

I told you that I have a friend who has breast cancer. She is having a hard time right now with her illness. I want to reach out to her, to help her, but my god I have no idea how. I just have myself and my wishes for her to be better, and prayers. No amount of positive thinking on my part or hers or anybodys is going to make things all better.

And I just don't like it. Cancer sucks. MS sucks. Autism sucks. Depression sucks. The list goes on.

I write on-line in several different places. I visited one lady this weekend not knowing anything about her. She had visited my site and so I was just curiously returning the favor. When I began to read this woman's blog my heart just sank. She was writing post after post about her depression and how out of control she felt. She was so filled with rage about everything. As I read on...I read how she had kids...and how she also has MS and...I just felt this big hole inside of me. All she wanted was some control over her life. Her depression and MS was robbing her of this and the people around her didn't understand. I felt instant compassion for her as some of her feelings have certainly mirrored mine.

You don't want someone telling you how you should feel. At these moments in life you just want the people around you to accept you as you are...sick....tired...sad...mad...and all of the above. I wrote to this woman I had found and told her she has every right to feel angry and it is okay...it will pass and she will feel more peace in time. I might as well been talking to myself.

I have a brain MRI next Monday. And I am scared. I have been putting off doing something about all this and I am not ready to talk about that yet. I wanted to wait and see if there are any changes. I am just not quite ready for all this yet. I am just not ready but tough noogies...I have to get myself ready. So I am gearing myself up...talking about my symptoms and....gee...i am so okay with all of this. But just between you and me. I am really not. Secretly...I am terrified.

I will be fine though. Just don't tell me to be positive about it. :>)

I am a weeble wobble who falls down!

Let's talk about MS today.

I had some symptoms today which drive me nuts. Today I was a weeble wobble but unlike my plastic counterparts...I do fall down!

This has to be one of my primary symptoms is the off balance feeling. Usually I sway to the right but today I felt like someone was pushing me forward. Boy that was a lot of fun!

My dog looked at me very strangely today as I came down the stairs on my bum. I didn't trust my balance to walk down like a normal person.

I rested a bit and the symptoms dissipated. Must have been brought on by heat. When is summer weather going to leave for good? I am so ready for autumn!

So tell me about your symptoms.

Here I will start. Here are the symptoms I have experienced with my MS thus far and...I have just begun this journey:

1. Feeling off balance.

2. Feeling the brain fog (being slow to respond and feeling almost drunk) This is the symptom I hate the most.

3. Slurred speech and difficulty talking. Volcanic talking where the words stay in my mouth and then explode in loudness when they finally erupt.

4. Spasticity or stiffness so I look like a pirate peg leg walking around.

5. Partial numbness and tingles.

6. Jolts and spasms of pain in my leg muscles.

7. Feeling like bugs are crawling on my leg.

8. Leg warmth like a warm bath. Feels like my leg is wet.

9. Eye issues like double vision, blurriness, flashes of light, seeing things in the periphery, etc.

10. Weakness in my right leg and hand. So my leg collapses and my hand finds it hard to pick up things and hold them.

11. Depression

12. Extreme fatigue like all the oxygen has drained from your muscles.

13. Foot drop...my right foot starts to drag behind me when walking.

Thing is...for now...everything comes back to normal. I am sure for a lot of you this is not the case.

So tell me about your experience. I am listening.