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. :>)

On being "positive"

I am not sure how we got here but I sure have gotten to thinking about this topic now and what the word "positive" means in the world of health. I began writing about my symptoms of MS and then about coping mechanisms and somehow we have a theme rising out of nowhere of the importance of positive thinking. Let's examine this shall we?

Let's take cancer as an example. One of my close friends has cancer right now. She talks about it...courageously. She has a website about her experience. She uses humor, information and facts, and her experience to help and inform others. I would never imply, insinuate, or instruct her to always be "positive." This would be insulting not to mention condescending. It assumes that she is not positive already. It would also assume positivity is the panacea of feeling when you have a chronic illness. You don't go around demanding everyone in the population be "positive" so why is such a particular request for those who have a physical illness?

People will feel as they feel. The one thing you can never dictate to someone else is how they should feel. The emphasis is upon the word should. Judgements about how people should feel are never acceptable or helpful.

When you have a chronic physical illness (and I am about to tell you that most of us eventually will have one if we don't already now) you are going to feel all sorts of emotions. You are going to feel in shock. You are going to feel pissed off. You are going to feel sorrow and grief. You may even experience guilt. And I am here to say that is all okay and normal. As a matter of fact, it would be abnormal to not feel these things.

Most people, when faced with having a disease, are not going to be La-la-la-ing across the fields like a smurf on coke. If so then there truly is a need for a funny farm.

The true meaning of being "positive" for me means...you are going to feel crappy at times, curse the universe and possibly God, cry shreik and yell, and then you will get up again to face another day. You will find ways to survive. You will find ways to channel your grief and anger into other energies...possibly creative ones. You will adapt and grow. You will use your experience to help others going through the same thing. And on a really good day you will reframe the experience and find meaning. And believe it or not the actual reason behind this blog right here is because I do find meaning in this experience and I want to share that with you.

However, it is ill advised to go about telling people what they should feel under this circumstance. It is just plain wrong.

I think instead of this cliched "positive thinking" we use as a strategy for every ailment or challenge, I would like to promote instead, the notion of emotional resilience. Emotional resilience goes beyond thinking happy thoughts. Emotional resilience would include the strength to allow yourself to be vulnerable. True strength isn't about avoiding messy or "negative" feelings. True strength is acknowledging that you do have them and allowing yourself to feel them. This stoic silent solitary person devoid of all emotions constructing a log cabin in the middle of the prairie all by themselves is a myth. We are all human. We feel things. And what's more, we all need help. Thus we share and lean upon each other. We are INTER-dependent creatures whether we want to think so or not.

I am sitting here thinking of the emotionally resilient people I know. None of them have fake smiles plastered upon their faces. A lot of them are downright cantankerous. It isn't so much about some superficial positivity as much as the strength and desire to perservere. The emotionally resilient person is not afraid to face fear. They are afraid but they do it anyway.

So where did we get this notion about "positive thinking" anyhow? I think we have this myth that if we set our minds to anything, that we can do it. Is this really true? Do we have limitations? Is life truly a mind over matter game?

I am thinking about this news article where a group of people were led out into the desert on a hike for a wilderness survival exercise. Here is the link. The man ended up dieing because the group leaders wouldn't give him water as they wanted him to finish his goal. They believed in the power of positive thinking to overcome bodily need. Bullshit. The man died because of their insanity.

It is my belief that we use this myth of positive thinking as a way to feel that we can control everything. Well we can't. This is the reason for the serenity prayer. Sometimes we have to relinquish control. And this is a scary proposition for most people.

There is a lot here to digest. I am going to keep going with this topic as I feel it is really important. There are really two separate things to discuss here.

My main point if you don't get anything else out of reading this is:

1. You don't preach to others how to feel. You never tell someone how they SHOULD feel a certain way because a. It pisses people off and b. It is just not too damn helpful. It is belittling, insulting, and condescending.

and...

2. I want to investigate the truth about "positive thinking" when it comes to how it can truly help with physical and/or mental illness. Can we really think our way out of being sick or being depressed?

It is funny because on another day I would probably debate the other way. For example...I own the film...What the bleep do we know. If you haven't seen it, it is a wild ride through metaphysical new-agey beliefs about changing our realities through our beliefs. And believe it or not...I found myself enchanted. I would love to believe in some of this. But for me I always seek balance. There is a grain of truth to everything. I want to see how I can best utilize knowledge so it works for me in my life.

I am glad I wrote this. I have been processing this for awhile. I have much more to say about this and other topics...coming up soon.

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.

coming back and reaching out

well...the world keeps spinning doesn't it?

i had taken my little depression break there, all tucked up and isolated from the world, and from friends as well.

i come back to begin visiting you guys and it seems the earth has fallen off of it's axis. lots of things going on with you all and some things have been very painful.

and i want to say...i am so sorry.

in my own little selfish bundle of protection i have been neglectful and perhaps the best thing i can do as an anecdote to my own despair is to reach out.

sometimes we do all need that time to self comfort and get it together. but then you take off the myopic lenses and see that...hey...other people are hurting too and could use a little support and care.

i am doing better now...for this moment...for this day at least and...i want to be a better friend.

so come on here and let me give you all a big hug! my arms are open wide!

peace and love to you all and thank you for continuing to be my friend and stop on by here. my door is always open.

There's always peach ice-cream.

Maybe for some people, the phrase would be, "There's always Paris" or "There's always Monday Night Football" or even "There's always naked bungee jumping." But for me the declaration that there is always peach ice-cream gives me a feeling of hope.

I guess one could say that I have been depressed. I found myself vacillating between irritable curmudgeonliness to downright weepy...wanting to cry cathartically over lifetime movies while eating cheese curls kinda sad. Well the cheese curls are gone and so is much of my sadness. I am keeping just a bit in reserve for weddings and funerals.

Yes I am flippant. How else am I to be? Should I be reading the Bell Jar as I devise ways to off myself? Okay well that covered my teen-age years. Let's face it, depression can be comical. All those exaggerated expressions of suffering can make your face freeze that way. I caught the reflection of my visage as I passed by the bathroom mirror in all of my despairing stupor, and for a millisecond the sight shocked me. My face had so many lines and folds I began to resemble a Pekingese puppy. Pure vanity made me stop contorting my face and begin instead, to transform into a more peaceful catatonic state.

Depression seems to make television so damn interesting. It is just about the least active activity I can think of. I found an endless fascination with VH1 shows about the seventies and eighties. I can say I lived through each and every year, nodding my head at the memories of Lee press on nails and singing the tunes of the infamous School House Rock's "Conjunction junction, what's your function?" Then I found myself enraptured by not one but two seasons of Flavor of Love. That New York...she is such a punk ass b***! But she was the only one feeling Flave in my opinion. I even watched documentaries about various wildlife getting it on as an almost always English commentator provided moment to moment feedback.

Aside from my television adventures I also re-discovered the joy of peach ice-cream. I used to believe that anything chocolate was the anecdote to sorrow. But now I am a believer in fresh fruit ice-cream...light and refreshing. I was mid-peachy morsel when I began to feel a tingle of hope. I can't really explain it but to say that I felt the constancy of peach ice-cream. If my whole world falls into a cesspool, I can still count on the fact that I can find peach ice-cream. It will be waiting in some parlor with cute little metal lattice tables and a glass case filled with endless frozen surprises. If I could feel a twinge,however fleeting, over that image, then maybe, just possibly, there were even more reasons for feeling happy.

There is always more, you know. There is peach ice-cream, and crunchy autumn leaves, and nice smelling dryer sheets which make your most comfy holey sweatshirt smell sweet. There is the sound of traffic and the trill of songbirds and the powdery smell of a baby's bald head. There are holidays and kisses and unopened presents. There are also surprises you have yet to experience and won't know about unless you hold on for another day.

Most of all, there is that glimmer of light which peeks in the door and teases, "Come on and open that door and let me in." And tearfully and sometimes reluctantly...you do...just that.

nobody is here

yes i realize i need and want to come visiting. and i will.

i just need and want to write as well.

not sure what.

i seem to be in a mood. contemplative. sleepy hazy mind drifting contemplative. borderline resolute.

things that cannot be. what are they? do we know? what is impossible? what do we really have control over? lots of little things i suppose. but those things are seldom the events and circumstances we wish to have control over.

is this life? pining and wishing and yearning? does that ever end? do we ever say...okay this here is enough. i wish for nothing more. nothing more to strive for. nothing to desire or want. perhaps the wishing makes life worth living. but does it have to be so painful?

and then the ultimate conclusion. do i not matter enough for some happiness to come in the form that i want it in?

far from my path...i need. my spiritual side says not to worry about the getting. give instead. give because i want to. giving is the desire.

i am human. i will stray from my path and sit down to put my face into my hands...create my own darkness...and cry from want.

a touch of sadness

i'm feeling a bit sad today. it has been awhile. and that break from melancholy is quite remarkable for me. i want to write about moods. they affect us all. multiple sclerosis seems to magnify moods.

depression is such a paplable entity. it is real. it is physical. you feel it manifest not just in your head but in your body. i feel it as a lack of energy. i wonder sometimes if the tiredness precedes the mood or vice versa. a human being is such a complex organism of systems all attempting to cohabitate in one body. it is more than impossible to unravel any one cause for changes in mood or mind state.

like i said, i want to talk about this sort of thing. it is important for people to know that different mind states, including depression, are just part of being human. we can't be happy all the time. why should that be the goal? the ability to accept the full range of emotion is a fundamental part of growth. we can't grow if we are always fighting what is. that energy could be better spent elsewhere.

pain, whether it be physical or emotional is an indicator that we need to pay attention. we need to become better attuned to our bodies, our minds, and our environment. pain is a message that we need to change. maybe it means we need to rest...or see a doctor...or talk to a friend. pain should not be dismissed as a mere hindrance to the status quo. pain reminds us that there is no status quo.

we are ever evolving creatures, fluid and dynamic. feeling less than desirable feelings, including sadness, is just all part of the process.

feeling good today!

I'm in a frankie kinda mood...

The Sunday Meme

Let's talk about poetry today.

1. Who is your favorite poet?

2. What is your favorite poem?

3. Which verses have given you the most inspiration?

4. Which poem would you read aloud to me on this end of summer's sunday morning?

What do you think?

I got this letter yesterday. Shall I do this? I saw Whimsy's blog on there! I wonder how they found me?

-----------------------------------------------------

Hello,

We would like to do an interview with you about your blog for
www.BlogInterviewer.com . We'd like to give you the opportunity to
give us some insight on the "person behind the blog."

It would just take a few minutes of your time. The interview form can
be submitted online at http://bloginterviewer.com/submit-an-interview

Best regards,

Mike Thomas

--
www.BlogInterviewer.com

What it is like to have an MRI

I suppose I have MRI's on my mind lately since I have yet another one scheduled for October. This particular MRI will show if there have been any changes with my lesions over time (since May of this year). I am really praying that my brain has behaved itself and is not actively destroying my myelin just for good sporting fun. We will find out!

So let's talk about MRI's shall we? I feel like a pro at it already as I have had three thus far. MRIs are a definite part of my medical future.

The use of MRI's are not just for Multiple Sclerosis patients. This handy dandy bit of technology developed in the late seventies, is used for all sorts of reasons including investigating sports related injuries, reproductive issues, and even health ailments related to organs of the chest. Basically an MRI is capable of giving some fairly detailed information about most parts of the body. Chances are great that in your lifetime, you will be experiencing getting an MRI for one reason or another.

How does it work? There is this big magnet see...and uh hmmm...how does it work? Good question!

MRI stands for Magnetic Resonance Imaging. It used to be called Nuclear Magnetic Resonance Imaging about fifteen years ago but people got a little freaked out about the word "nuclear." People thought that meant something dangerous and radioactive was gonna happen to them which isn't the case at all. Actually MRI's are a pretty darn safe procedure. It is also non-invasive with the exception of the injection of dye into you, but I will save that tidbit for later. I was correct in telling you that a large magnet is used. Basically you lie inside a tube which is really a large and powerful magnet. A radio wave antenna is used to send signals to the body and then get signals back. These signals are then converted into pictures by the computer which is connected to the scanner. This is how you get those nifty large scale photos of your brain or whatever body part you had scanned that day.

Now what happens when you have Multiple Sclerosis is that the images you get back will have some white spots to indicate brain lesions. I had looked at my scans and had great difficulty knowing what in the heck I was looking at. Gee...do ya think it is because I am not a doctor? Nonetheless it is good to have some clue about what is going on in your diagnosis and treatment and have the doc explain things to you so you are not needlessly freaking out over things you don't know how to interpret.

*SPECIAL TIP* When you do get an MRI, the scans are yours. They belong to you, so it would behoove you to go and get your scans when they are ready. That way you always have a copy to bring with you to the different docs you might see. It has been known to happen that the MRI scans mysteriously do not show up at the doctor's office on the day of your appointment. (Yep...this happened to me) So get those scans as they are yours. You and your insurance paid for them, you might as well hold onto them.Now where was I?

Ah yes...I was going to talk about what the experience is like. I have to warn you that if you are claustrophobic, then it is well...a little tight in there. I really didn't know how claustrophobic I would be for my first MRI, ten years ago so I opted to be given some valium to take before I went for my scan. At that time I was told I might have a brain tumor so the valium really didn't do a whole lot for my fright. ( By the way I did not have a brain tumor but ten years later I have MS.) It did help with the claustrophobic feelings though. For my recent scans I was never asked if I needed anything. So if you know you will need a little something make sure to be vocal to your doc when they are ordering the scan as they don't automatically ask you.

Recently I have had both a brain MRI and a C-spine MRI. Note that if you are being looked at for MS then it is possible to have all sorts of different MRI's but generally they will look at your brain and possibly your spine. Here is a little anatomy refresher about the spine. The spinal column is made up of three sections of vertebrae: the cervical, thoracic, and lumbar. The cervical spine is what most people call their neck. There are seven vertebrae here. The thoracic spine is located in the middle of the back, and is made up of 12 vertebrae. Just below is the lumbar spine with its 5 vertebrae.




So it is conceivable that if MS is being investigated, that you may have to do not only a brain MRI but also have ones done of the different parts of the spine. While my brain MRI showed multiple lesions, there was nothing on my C-spine MRI (my neck).

But you still haven't answered the question of what it is like to have an MRI! Okay I hear ya. Hold yer britches on, I am getting to it!

Well let me tell you first what is fashionable to wear for an MRI. The minimal look is in as in NO jewelery or metal of any kind. You don't want to pull a Homer Simpson do ya? For my brain MRI I got to wear scrubs. Cool! I got to see what I might look like on the set of Grey's Anatomy. Oh mister McDreamy where are you? For my C-Spine MRI they were very casual about the whole thing and I got to wear my regular clothes sans bra. Look Mister McDreamy I am braless! But I digress. Serious stuff here these MRIs.

There are usually two people present on either side of you. You get to see the big machine. Remember in Monty Python the machine that went ping? Well this machine goes "PING" very loudly! For this reason they give you earplugs. I have heard that sometimes music is played but that was not my experience. Sometimes the folk there tell you exactly what is going to happen and sometimes they are rather abrupt and just send you in the tube with very little explanation. If you don't understand something do ask before they put you inside the machine.

All of my MRI experiences were with the conventional closed MRI machines but I hear there are one which are open, meaning you don't go into the tube. I have read that the scans are of better quality with the closed MRI's so you probably want to opt for that kind if they are investigating MS.

So you lie down and they have a place to rest your head and a rest for your feet to elevate them some. There is a squeezee bulb placed next to your hand in case you need to contact the nurse. You squeeze it and they will stop the scan and attend to you. I can proudly say that I never had to use it but I wanted to! If you are cold they may offer a blanket. Hospitals are notoriously chilly places. They will sometimes tell you how long the procedure will take. My brain MRI took about 45 minutes and my c-spine MRI took slightly less time.

Get ready! They are about to push you into the tube! But first they put this mask thing on you. Reminded me of the Silence of the Lambs mask. It doesn't touch you but it is definitely covering your face. Then comes the moment they push you in there. The ear plugs do help as it gets loud in there. You hear a lot of science fiction-y sounds includings hums, pings, pongs, and jackhammer rat-a-tat rapid fire sounds. You do begin to feel as though you are in a bad sci-fi movie where aliens are probing your brain. It feels very surreal. To add to the weirdness you are supposed to remain still and not move! Of course I always imagine something is itchy during such times. So be sure to scratch and itch anything you need to before going into the tube.

Some people go to sleep in there. I sure can't. And I am not sure that is such a good idea to sleep anyway. You might start dreaming and begin to move during the scan which would cause them to have to repeat things. So just try to be calm and still while awake.

*SPECIAL NOTE* It seems common sense to tell you this but close your eyes when you go into the tube. That way you are less fearful of what you see as in this tube like tomb encasing you!

Now with my C-spine MRI, I read something beforehand which talked about that not only should you not move but you should also not swallow. This was very psychologically disturbing to me. No swallowing? No can do. I asked the nurse and she said that it probably is not a good idea to swallow too much and to definitely not take "big gulps." I didn't get to ask more details as my mind wondered, "Exactly what is too much swallowing? Do I get three swallows in a half an hour? and "What constitutes a big gulp?" I had much time to dwell on these matters as I tried to remain both still and not swallow too much.

For some MRI's you get to have a special dye injected into your veins. This dye lights up any areas of enhancement, showing the docs any areas of active lesions. Don't worry, the dye won't hurt you. However, an inexperienced nurse doing the injection can!

Now see I listen to the small talk of docs and nurses and take in every detail. Two nurses were talking about the fact that the injection can sometimes be painful if the needle does not get into the vein properly and also if they do not wipe the alcohol dry before injecting you. This is exactly what happened to me for my last MRI. The girl doing it looked...well...inexperienced. She had difficulty finding my vein and then asked if it hurt. This was a warning as things did not hurt at all...yet. Once I was in the tube my arm started to hurt tremendously. My arm felt like it was on fire and burning. I didn't want to be a wuss though so I didn't say anything. In about ten minutes the burning stopped but I was mad! Soon as I got out of that tube I was going to ask what she did to me! Of course when I finally did come out that bad jabber was nowhere to be found.

That was a difficult day for me, lots of different tests and the C-spine MRI was just the last of it. And then to not be able to move, swallow, and having my arm set afire was no fun. But seriously, it is usually not a big deal at all to have an MRI. I am the biggest chicken in the world and if I can do it, and multiple times, you can do it too.

The information the MRI provides is of great value. This will probably be the best information for you to get a diagnosis and treament. The MRI can also tell you if the treatments you use have been effective or not. I wonder what we did without this technology. Imagine that several decades ago diagnosing MS (along with a lot of other diseases and disorders) was a guessing game at best.

So this concludes my very long post about MRI's. I hope it was useful to someone out there. I will be back to talk about other medical adventures very soon. Here is a hope and a wish for good health for everyone!