The Stuff That Dreams Are Made Of...

Last night I had the strangest dream. I dreamt I was on the shore of a rushing river and on its opposite side, I could see and even hear several of my coworkers laughing and having a great time on a beautiful, sandy beach. They kept calling to me to swim across the river and join them…somehow in the dream I knew that was how they had gotten to the beach. By crossing the river. I was standing in what appeared to be a very muddy and disgusting muck on my side of the river and, the longer I stood still in one place, the deeper I sank in the mire.

I kept yelling out to one of my coworkers in particular, “You know I can’t swim that. I have MS”, and she would just laugh and wave her arm in the air, signaling me to come across. Suddenly I realized I didn’t have any arms and I began to panic. How was I even going to free myself from the muddy muck I was standing in let alone try to paddle my way across a roaring river? I stood still, feeling myself sink deeper and deeper into the mud, until I awoke with a start.

As I slowly reoriented myself and my consciousness back into reality, I lay in bed contemplating the meaning of my dream. I have a couple of theories why I dreamt this and I’ll share them with you now. But first, I must take a moment to explain my basis of dream analysis theory…it is a mixture of several theoretical beliefs that work for me!

Viennese Psychiatrist Sigmund Freud first developed the theory about the role of the unconscious on the individual. Freud believed the dream worked on two levels. A straightforward level showed events in dreams as remembered. However in the latent level, objects and actions in the dreams symbolize sexual and aggressive feelings and ideas that are repressed. He further went on to stated that there had been three great disillusions in human history: Galileo's discovery that we were not the center of the universe, Darwin's discovery that we were not the crown of creation, and his own discovery that we are not in control of our own minds. One of Freud's most important theories is that psychoanalysis of the dream allows us to uncover emotions that are buried in our unconscious in disguise. That dreams represent the 'peepholes' of our minds.

Freud said that most dreams are wish fulfillments, and that an important part of these wishes are the result of repressed sexual desires, desires that can scare us so much that our dreams turn into nightmares. He concluded that dreams are divided into wishful dreams, anxiety dreams, and punishment dreams. Punishment dreams are in fact also fulfillment of wishes, though not of wishes of the instinctual impulses but of those of the critical, censoring, and punishing agency in our controlling minds.

Now, frankly I think Freud was a bit of a crack head in many of his theories, particularly when they were about women and sex. If you recall, he’s the one who invented the term “hysteria” which comes from the Latin word “hyster”, meaning uterus. And it doesn’t take a genius to figure out he was talking solely about women here, since you fellas don’t have this organ! But I DO believe his contribution in the area of discovering the workings of the unconscious mind were important.

Carl Jung, a student of Freud, took his theories one step further. Dr. Jung believed dream content used symbolic language. He proposed that a dream expresses collective racial unconscious memories and instincts shared by all people. These are basic ideas that are themselves symbols. These include the hero, monster, mother, father, mandala, sacrifice, and the mask. Dreams also indicate the way to self-actualization. Jungian therapy in fact deals extensively with dreams and fantasies. So in dreams it protects the sleeper from the effects of a realization of these wishes. The dream taps into the desire for wish fulfillment when the controlling ego is relaxed during sleep.

Now that’s a whole lot of mumbo jumbo psychobabble, but I felt it is important background before explaining MY rational for my earlier morning dream. And if nothing else, you have just received your first Psychology 101 lesson! Of course I forgot to include the behaviorist theory, which many of you may agree with even more: behaviorist psychologists refuse to place any meaning on dreams, since they cannot be studied directly and scientifically!

So with that said, let me move on to my interpretation of my dream! I believe my dream symbolized the great fear I have that Multiple Sclerosis will render me “stuck in the mud” if you will, and Iwill somehow find it impossible to “swim across the river” and join my coworkers there.

It IS true. One of my greatest fears is becoming disabled to the point I can no longer go to work or support myself with employment. Being off work during this latest relapse has allowed that fear to raise its ugly head and roar in the conscious and unconscious areas of my mind. I don’t “do” recuperation well. I don’t “do” lying around and resting well. And I generally am a “doer”.

It is a struggle for me to allow myself the necessary time for my body to heal itself, especially during an unknown period like a relapse. If only relapses came with a time limit guarantee! They sure would be easier to deal with knowing there was an end in sight.

On a good day, which lately has been a rare event, I can see past the illness and know I will not always feel this way. I will not always need to be home lying around and resting. I will eventually return to the job I enjoy and most likely have several more years of gainful employment.

But my dream has been a significant jolt to my psyche today, reminding me I must also face my demons and dragons and identify them for what they really are…feeling afraid. And because fear is just that, a feeling, it still remains something that is “optional”. I can choose to feel afraid or I can choose to feel relaxed and content. And I can also choose to take whatever actions may be necessary to insure my job security. (This, spoken like a true behaviorist…which I am not!)

Hmmm….with that said, maybe I WILL try to take a nap later today and explore what other unconscious ideas may be lurking around in my holey brain!

Kids, Don't Try This Act At Home...

Multiple Sclerosis should come with a warning label, but it doesn't. Everything it has taught me has been by trial and error.

Take for instance, this morning...I awakened from a deep sleep with the usual drool hanging from my lip and slowly oriented myself to the sight of my bedroom. Everything seemed just as I had left it last night, as I adjusted my eyesight to the slivers of daylight peeking around my window shade.

Being a quick study of MS, I proceeded to do my standard routine of a body check before making any sudden moves. After all, one never knows what surprises MS has in store for the day when first waking up! As an example, I learned a long time ago I needed to do some serious bed ballet with my lower calves before trying to stand up. One too many falls from muscle spasticity has taught me to stretch my legs and lower calves BEFORE asking them to hold me upright.

My legs actually felt remarkably comfortable after completing my private version of Swan Lake, so I moved up my body with my internal MRI scanner, searching for any signs of discomfort or warning. The only things I found were the nagging pain in my left shoulder that has been with me since my last relapse and a fuzzy head buzzing with a slight headache in my forehead. Everything else passed the body check, so I decided I was officially "cleared" to get out of bed.

I did my usual slow rise from laying flat on my back to pushing myself up to a sitting position...so far so good. It wasn't until I stood upright and took two steps toward my bedroom door that I realized the rest of my body wasn't following my feet! I proceeded to complete a very ungraceful swan dive into my wall and landed like a stunned wrestler doing a body slam onto my floor.

In my customary and insightful way, I yelled out to no one in particular, "What the hell?!?", as I sat stunned like a bird flying into a glass window.

The weight of my fall was cushioned by my well-padded rear end, so I wasn't concerned about any broken bones. I was too busy crunching data in my head, trying to find the culprit behind this morning's tumble prank. It wasn't the calves...they were mooing contently today. It wasn't vertigo because nothing was spinning.

I suddenly remembered I had started Neurontin last night to try and combat the intense arm and shoulder pain I was still feeling from my relapse. Ah Ha...that had to be it...the Neurontin had caused my gait difficulties this morning! **Mental Note To Self: Warning. Neurontin may cause you to fall...make certain your legs work next time BEFORE walking.

I finally picked myself up off the floor, smiling and laughing out loud at myself. Just another day of learn experience from the great master teacher, MS.

I have decided I am changing the name of my new drug to "Morontin" because I think it is a more descriptive name of how it affects me. I can't wait to see what other great lessons I have yet to learn from my "Morontin"...I just hope there are no broken bones involved!

Friends With MS...The Importance Of Staying Connected...

I just received a wonderful email from my newest friend, Suzy, over at http://miss_suzy.typepad.com/my_weblog/ , or Tryin’ To Imagine Bliss blog. It was hidden amongst a few spam emails and an assortment of jokes sent to me by my “other” friends…you know, the ones without Multiple Sclerosis who send me periodic jokes to keep me laughing? And although I appreciate a good email joke on any day, Suzy’s email was the one that I was most delighted to read.

If you read Suzy’s blog, you will quickly discover she has MS, too, and also a wicked sense of humor about living with the disease and just plain living in general. I read her blog and a few select others everyday and I try (when I can) to go into a couple of MS chat rooms, just to “hang out” on occasion.

One of my non-MS friends asked me recently why I would even want to “hang out” with other folks diagnosed with MS and didn’t connecting with them depress me somehow? I suppose she was thinking the old “out of sight, out of mind” idea was a better way to deal with the disease than having it constantly in my face. I have to say, her comment got me thinking about why I DO choose to “hang out” with others with MS and what’s in it for me?

When I was first diagnosed with Multiple Sclerosis, I knew no one directly that had the disease. Having a background in healthcare gave me some limited knowledge, but not enough to satisfy my insatiable hunger to learn as much as I could as quickly as I could as a means of combating my overwhelming sense of fear. I did a search on the internet and stumbled into a chat space called, Jooly’s Joint. It is at http://www.mswebpals.org/ . At Jooly’s Joint, I met several people from around the world who had MS and I spent many hours in chat asking questions and learning from The Masters just what Multiple Sclerosis was and how to cope with it. I soon moved from being a scared “newbie” to one of the old hands, offering experience and advice to the newer diagnosed. I don’t go to JJ’s (that’s what we old hands call Jooly’s Joint) often anymore, but occasionally pop back into chat to see what’s going on. I am always amazed at how many newcomers there are, asking questions and trying to find answers.

Most of my chat time now is spent in a private chat with dear friends in England, Scotland, Canada, and others from the States…we became a close knit group from JJ’s and all share the same, common goal in chat…to have a mockingly good time and lively discussion. Most of us have been diagnosed and living with MS for a few years now…because we know each other well, it is a safe place to be irreverent about MS and any other topic that might seem offensive to someone newly diagnosed. We laugh a lot and laughter is always good for the soul.

I believe it is important to stay connected to MS in a healthy way. After all, it’s going to stay connected to ME for a very long time, so I might as well figure out ways to make friends with it! One of the ways I do this is in reaching out to others with the disease. And even though cyber connection is not a behaviorist’s optimal idea of connection, it IS a wonderful tool in meeting and sharing with people of a like mind. I hear their stories of living with MS and I am given the opportunity to share mine. This not only provides me with a wealth of knowledge and insight into the disease, but also lessens my fears of the unknown. It is through connection with others, I find a greater strength and encouragement to put one foot in front of the other and carry on.

I encourage you to seek out whatever connecting tool works for you in the management of your own disease, whether that is via the Internet, a support group, or the company of understanding friends or family.

MS does not have to be a lonely disease and you do not have to feel alone in dealing with it.

Sick And Tired...A Backwards Glance At Fatigue & Multiple Sclerosis

I’m just sick and tired. There, I’ve admitted it out loud. Although I thought by saying those words, I might find some relief from my guilt of feeling so darned sick and tired!

Fatigue and MS seem to go hand in hand, like Amos and Andy, only not so entertaining. This past relapse has helped me gain a better understanding of the symptom of fatigue because it has been kicking my butt! I thought today’s blog would be an excellent opportunity for me to discuss my understanding of fatigue in MS and also review some of the literature I’ve read.

When I was first diagnosed with Multiple Sclerosis in 2003, I had a plethora of symptoms, one of which I had little understanding of was why I felt so tired all the time. For a long time, I just chalked the fatigue up to being fat and lazy and living an unhealthy lifestyle with too much stress…that seemed to work for me because little else could explain my lack of drive to get out of bed some days. I also was aware I had bouts of depressive symptoms, so I “clinically” diagnosed myself as having a behavioral defect that kept me from tapping into my well of energy. It seemed easier for me to feel guilty about being defective or lazy than to grasp the notion there may be a physical component to my tiredness. And guilt was far more acceptable than trying to make sense out a neurological explanation and convey this meaningfully to my coworkers and friends.

Most of the literature out there will give you an estimate that 80% of people diagnosed with MS will complain of fatigue and many will present fatigue as their primary symptom that disrupts their daily lives. However, most of the literature is inconclusive as to why this symptom is so predominant and there is little actual research study available to explain its occurrence.

There are many “theories” about why fatigue occurs so frequently in MS, but little conclusion. What IS known is fatigue in MS is very different from the average person’s complaint of feeling tired. MS fatigue tends to carry a pattern of symptomology atypical to what a normal person might feel from simply being “tired”:

*Generally occurs on a daily basis
*May occur early in the morning, even after a restful night's sleep
*Tends to worsen as the day progresses
*Tends to be aggravated by heat and humidity
*Comes on more easily and suddenly
*Is generally more severe than normal fatigue
*Is more likely to interfere with daily responsibilities

MS fatigue is further differentiated in the literature and has been given a fancier name than “lazy” by neurologists. They call it MS lassitude, which clinically means a state of feeling weariness, diminished energy, or listlessness brought on by disease…you can quote me on this one next time you’re trying to explain why you feel so damned tired to your family or friends! Just say you suffer from MS lassitude. It’s sure to impress them.

Because Multiple Sclerosis comes with such a wide array of neurological symptoms, it is very difficult to tease out the basic cause of fatigue in MS and I believe this is why no one can conclusively tell us why we feel so tired…or at least why 80% of those of us with MS are fatigued! There are so many possible causes and researchers tend to focus most of their energies on the area of sleep disorders in MS:

These include painful muscle spasms from spasticity, the need to make frequent trips to the bathroom (called “nocturia”), or involuntary twitching and kicking called “periodic limb movements in sleep,” or PLMS.

Smaller numbers of people with MS have difficulty swallowing during sleep or suffer from sleep apnea—temporary pauses in breathing, often accompanied by gasping, choking, or violent snoring.

MS symptoms and the sleep problems that tangle up with them are many and diverse. Some are directly related to symptoms; some may be caused by the location of MS lesions (areas of damage) within the brain. Others may stem from stress.

Whatever the cause, one thing remains constant…feeling tired! There are several pharmaceutical treatments (i.e., drugs) on the market and I have heard from others with MS, the drugs can be quite effective. Medications like Amantidine and Provigil tend to boost energy levels. And then there are the basic stimulants like Adderal, Cylert, and Ritalin, which I am told have helped some with their fatigue. There are also multiple medications available to treat spasticity, nocturia, and PLMS or Restless Leg Syndrome.

I have a filled bottle of Amantidine in my personal arsenal pharmacy and have never taken one of the pills. Why? Because a little knowledge is a dangerous thing. I researched all the possible side effects from the medication, deciding at the time, I’d rather just feel tired than risk one more drug induced symptom! I settled on a dose of anti-depressant called, Wellbutrin, which seemed like a good choice in treating several symptoms at once. Not only does it seem to “boost” my energy (Itake a higher one time dose in the a.m.) at the beginning of my day, but it also provides some mental clarity…I know this because I tested it via theory of NOT taking it for a period of time. And, those underlying demons of depressive symptoms get a knock on the head, too.

If you choose to treat your fatigue, treatment options are best discussed with your neurologist and tailored to fit your individual needs. Until this last relapse, I felt uncomfortably “comfortable” with my fatigue and was able to make lifestyle changes to accommodate my needs. Now I may have to reevaluate these goals and needs because fatigue is substantially interfering with my life and my guilt factor is resurfacing.

There are several resources out there if you’d like to read online about MS fatigue, the National MS Society being one of them at:

http://www.nationalmssociety.org/Sourcebook-Fatigue.asp

I have to go lie back down now…I’m pooped!

I Am Left Speechless...

I thought I would be able to sit at the computer today and type a witty blog about my first day back at work after relapse, or perhaps something important and pertinent to Multiple Sclerosis, but I can't. These topics will have to wait for another day.

I have just witness the most moving event I have seen in many decades on the streets of downtown Seattle and I am speechless. Thousands of immigrant people set to foot and marched en mass to rally solidarity and protest today. It was a sea of moving bodies, waving signs, waving American flags, shouting, singing, and cheering. They banded together to raise one voice and finally be heard as my government struggles to recognize its many limitations. The sight brought me to tears and humbled me beyond words. And, I felt embarassment for the color of my skin, my ancestors, and any choices I have made along my path that have created disharmony among people of all nations.

I stood on the street and watched in awe as so many people passed in front of me, each with their own, personal story of why they were marching...each with their own passion to "suit up and show up" yet another day. They have come to this country for so many reasons, but it is their primary passion to live a dream that brought tears to my eyes. I felt the problems of my own life and health melt away as tears rolled down my cheeks and cleansed my soul.

Amendment I

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.

May I never forget the sight of today's march or the carefully chosen words of the First Amendment.

How To Find Mr. Or Mrs. Right...In A Neurologist, That Is!

I’m on my third marriage with my current neurologist. That’s right, I’m fickle! I like to play the field, and when it comes to my health and well being, I have found absolute commitment to be a work in progress.

I must say for the record, I am currently “at” love with my neurologist. Our union of patient and doctor has been a great fit for me. I was introduced to Dr. She Who Will Remain Unnamed via a dear friend who doesn’t have MS, but has other neurological issues. We hit it off right away.

Now, I’m not one to trash past relationships because I am certain my previous two neurologists were fine and knowledgeable physicians. We just didn’t click…didn’t have that “spark” between us, if you will. My first neurologist actually had my same last name, and this just felt way too confusing when I called his office. And my 2nd neurologist worked in a clinic/hospital system that became too cumbersome for me to navigate. It really wasn’t her fault, but we divorced just the same.

For those of you just beginning to slide the slippery slope of Multiple Sclerosis (and even for those of you who are now professional skiers on MS Mountain), finding the right physician can be an overwhelming task. So, I thought I’d take time in today’s blog to share what I hope may be helpful tips in your hunt for that perfect patient/doctor relationship.

Because healthcare is a business and someone must pay and be paid in business, your primary consideration is who is flitting the bill for your relationship. If you’re fortunate enough to have private insurance (henceforth to be referred to as “The Platinum Card”), you may have the freedom to play the field and see any practitioner of your choosing.

However, if you are strapped to HMO funding or government assistance, the list of available doctors shortens considerably. It is important to first establish what your plan covers and WHOM your plan covers. This can be done with a simple phone call to your insurance company. They keep reams of lists for this purpose. And, if you’ve got unlimited personal assets to pay for your MS care out of pocket, read no further. You certainly don’t need my help!

Once you’ve established your “who” list of availability, your next step is to consider location of the provider. Personally, I would drive 100 miles to see my current neurologist, but that’s just me. I’m “at” love with her. And the reality is her office is less than a mile from my home, so getting there is only a long walk. Distance can be a major factor though, if you are already experiencing transportation or mobility issues, so keep this in mind.

I also recommend to anyone who has a diagnosis of Multiple Sclerosis, thatyou see an MS specialist. There are many highly skilled neurologists and doctors practicing medicine out there, but MS is not necessarily a well-known disease by all of them. It is a specialty of neurology. Your chosen physician should be able to tell you how many patients they have treated with MS and, more importantly, how comfortable they are in treating YOUR MS. There are a select few of neurologists who have established MS clinics, focusing the majority of their practice to this specialty.

If you can’t get in to a MS clinic, see a neurologist who specializes in MS, or even be afforded the availability OF a neurologist because of insurance or other constraints, then it’s time to ask some important and detailed questions of your chosen provider:

1. Have they ever treated anyone with Multiple Sclerosis and what is their understanding of the disease?

2. What is their philosophy on treatment of MS, specifically the use of the ABC drugs (Avonex, Betaseron, Copaxone)?

3. What is their approach in managing your relapses and ongoing symptoms, i.e., drug therapies, physiotherapies, etc.?

4. In the event of a severe neurological issue, where does the physician have privileges to hospitalize?

5 . How and by what means is the physician available to you? By phone? Office visits? Email? Office nurse? And, what are their office hours?

6. Is the physician actively involved in receiving training in MS via research, conferences, or teaching curriculums?

It’s probably no longer an important issue where your physician received their medical training, unless of course, you just want to brag about having an Ivy League doctor. Frankly, one of the best neurologists I know was trained in North Dakota and another went to basic med school in Mexico. It’s really how well they absorbed the material and not the location where they received their medical knowledge. And, all states DO require licensing for anyone practicing medicine. Any physician’s track record (that would be disciplinary actions, license suspensions, law suits against them) can be found via the Internet or the State Board of Licensing in which they practice. The American Medical Association also keeps “loose” notes on doctors that are available to the general public if you know to ask for this.

Finally…and probably the very most important consideration in choosing your medical partner, is the compatibility of your healthcare goals and personality styles. If you can’t get along with ‘em, it just ain’t gonna work out and you’ll both want a divorce after a short honeymoon!
Ten years ago, I only wanted my doctor to tell me the facts and give me a prescription. That was before I was diagnosed with MS. Today, I need my neurologist (and other providers) to see me as a person first, then a patient, and not just a walking body of bizarre symptoms. I need my neurologist to have a sense of humor because that helps me laugh at the absurdities of MS. I’d say, “Good luck finding a brain surgeon with a sense of humor”, but there ARE a few, rare humorous neurologists out there!

I also need my neurologist to recognize and respect my understanding of my disease. Although not carrying M.D. behind my name, I DO have some clinical knowledge of medicine and I am the expert on my own body…I live in it. I need my neurologist to collaborate with me in my care, respecting I may not always choose the “best” approach that’s offered me, but it is still MY choice. And, I want to know all of my options.

I will close this blog with the wonderful words of wisdom provided me by my own neurologist, Dr. She Who Will Remain Unnamed. I asked her for “pointers” in choosing a neurologist and here’s an excerpt of what she said:

“As far as choosing neurologists, I think it’s a matter of finding one whose personality is compatible with your own…Sad as it is to say, it’s also important to find someone who cares about you. I know there are some physicians out there who think of medicine as a job, instead of a passion or avocation. On the other hand, sometimes having a doc who cares too much can be a problem…I think if you make it through med school and residency, your academic qualifications are adequate, so then it’s just the icing on the cake that makes your relationship with the patient a good one.”

And now you know why I’m “at” love with her!

If you live in the Greater Seattle, Washington area and would like a list of MS Clinics/MS Specialists, I will happily respond to your email at Baitulos@aol.com. Likewise, the Greater Washington Multiple Sclerosis Chapter is an excellent resource in obtaining physician information.

Either Sh** Or Get Off The Pot...

I have decided since Montel Williams, Melissa Etheridge, and many other “superstars” have recently taken the courage to address this issue, perhaps now would be a good time for a little known MS blogger to also weigh in my two cents worth on the subject of Medical Marijuana.

Perhaps you, too, have heard the age-old saying, “Either Sh** or get off the pot”. I’m pretty sure the origin of this saying was not in reference to marijuana, but it seems like a great motto for this issue as well! Frankly, I’m tired of this debate. I’m sick of hearing about congressional meetings, Supreme Court decisions, the DEA, proponent testimonials, and basic drug studies either condoning or flat out denying the efficacy of marijuana and its uses for chronic pain and disease suffers. And because I work in a government job, you’re not going to hear any personal accounts from me swaying your decision to “smoke dope” (as my mother used to call it) or not. I CAN’T give an opinion about the matter because my government has deemed the substance illegal and I represent a tiny branch of that government in making my own livelihood.

What I will say is this: I’m sick of hearing about it. I could go into deep dissertation about the many perils of drug addiction, alcoholism, and the addictive personality. Because of my behavioral science and healthcare background, I’ve seen and learned a lot on these topics over the years…I’ve seen first hand the wretched outcomes of addictions gone badly. But I think in the discussions of Medical Marijuana, we have all missed a major point. And that major point is, CONTROL OF CAPITALISM.

Why is it you suppose this issue cannot be resolved? I have some ideas about why, but my ideas are not necessarily mainstream or popular. Regardless, I’m going to hit you over the head with a few now because I just need to “sh** or get off the pot” here!

The production and sale of cannabis/marijuana is a multi-million dollar business in the United States, in spite of Nancy Reagan’s “Just Say No To Drugs” Campaign (although now I think she’s moved on to stem cell research, but that’s a topic for a later time!). It is produced and sold in an illegal market because our government has decided it is bad for us. Because it is marketed illegally, no one is paying taxes on the product and there is no regulatory control on the safety of it by the FDA. Other than drug enforcement agent’s salaries, no one in our government is currently reaping the financial benefits from this multi-million dollar business, and this boils down to CONTROL.

Now, I know the powers that be are far more knowledgeable of what is “best” for me because I’m just one of many sheep in the flock…a stupid animal needing shepparding, if you will. That’s why we have some of our laws…because we DO sometimes make stupid decisions like throwing back a pint of whiskey, and then thinking it’s OK to get behind the wheel of a car and kill some other innocent driver. We NEED some external controls placed upon us just like we sometimes need parenting. I’ll award a point here for basic controls in law enforcement because I respect the law and its ever-changing interpretations. I see it as a necessary component to protect me from YOU, if nothing else!

The interpretations of the law regarding the use of Medical Marijuana become very murky and gray, however, if we remove the idea the drug could not be used responsibly by the general public, and therefore, not needing strict government CONTROL. The government lets us drink alcohol with only controls on when and where we take it in within the general public…it is not against the law to float your back teeth in booze in your own home. It is only when you step outside your home and begin to interact with society in stupid ways, the government steps in and regulates the CONTROL on your actions.

So if we were to eliminate and/or regulate marijuana like we do alcohol with behavioral laws (which alcohol is an even bigger TAXED money maker in the USA!), why then could this drug not be used responsibly by the “sheep”, and the government relax its anal sphincter about this issue? I think I know why, but at the risk of sounding like a communist, I’ll just say a few words about capitalism and move on. I really don’t need the National Security folks tapping on my door because of a silly blog!

The United States government has yet to figure out a way to get its entitled piece of the pie when it comes to the production and sale of marijuana in the US. It doesn’t condone the drug (yet), so it can’t say it agrees with the use of it (yet). Drug use/abuse is still unfortunately considered a moral affliction in our culture, so this weighs heavily on the minds of our congressmen and women when they are considering their constituent’s votes. It has become a major “Catch 22” for our government…we don’t approve of it, but we want to make our share of money off it just the same, and it’s hard to accomplish both.

If I ruled the world, or just had any say in the workings of government for that matter, I would give our congressmen this piece of advice when considering how to deal with the issue of Medical Marijuana: Think Nevada and prostitution, then turn a blind eye if you must. That state seems to have come to some kind of working compromise between capitalism and moral ground and I don’t hear ANYONE debating their state law on Capitol Hill!

I Blog, Therefore I Am...

Well, today certainly IS a new day! I awoke with a refreshing 4 ½ hours of sleep (believe me, this is “good” news, having only been able to sleep about 2-3 hours a night for the past 3 weeks!) and seem to have a bit more mental clarity than usual. The aches/pains of my relapse are still upon me, but it is amazing how much easier they are to tolerate when feeling more rested. I hesitantly whisper a “HooRah” out loud, now believing I may emerge on the other side of this MS relapse intact. In the words of dear Martha Stewart, “It’s a good thing.”

I thought today might be one in which to focus on that ever used and common word: HOPE. I’m currently wearing the red MS Band O’ Hope on my wrist. You know, the one the National Multiple Sclerosis Society has mass-produced to raise awareness and money for the cause? I frequently hear people talk about a “hope” for a cure, a “hope” they remain healthy, a “hope” for this and that. But what does “hope” really mean?

Dear Merriam-Webster defines hope as follows: hope noun 1. expectation of something desired. Interestingly enough, Roget’s Thesaurus defines hope as a verb. 1. To have a fervent hope or aspiration. To aspire.

So who’s right in this grammatical exchange? Is the darned word a noun or a verb? And how could the two world’s leading grammarian experts NOT agree on the word being an action word or a substantive description? It is only a four, letter word and two of which are vowels!

This brings up an interesting point of conflict for me as I travel down my own road of MS and “hope”. I don’t always agree with the use of this word either and I don’t always agree with the way I hear it used by others. Sometimes the word down right stings in my ears. Especially when I’m being told things like, “Well, let’s hope today is a better day for you”, or “Well, there’s always hope for a cure”. These well intentioned, but patronizing statements make me wish the word “hope” was a substantive noun I could physically drop kick into the next universe! And these statements generally come from good-hearted folks who have no idea what the ramification of their words mean to me.

Most of the time, I can just accept other people’s “hope” for me as a verb, an aspiration, or a wish. They DO always mean well. But instead, what I would rather they talk to me about is their feelings behind the “hope cloak”. Their sense of NEEDING to or HAVING to aspire me to something else, because MS just plain sucks. (Which by the way, “aspire” means to rise to great heights…and that is assuming you are low enough already to have somewhere higher to go!)

Multiple Sclerosis is a scary beast. It doth work in mysterious ways. It is unpredictable and undesirable. It, alone, has resulted in much aspiration, desperation, and consternation. It is highly unlikely there will be a cure found for this disease in my lifetime. It is a higher probability I will continue to progress down its path however the disease will take me until such a time I no longer function. These are not “hopeful” thoughts, but they are an accepted reality for me. My “hope” is to give my friends permission to be scared, too, and not have “hope” so hard for me.

Yet there is still a small voice inside my head whispering “hope”. There is an aspiration inside me to make the most of this moment today. There is a burning desire to enjoy as much of this moment as I possibly can take in. There is a push to breathe and to see beauty in the sunshine today. There is a craving to take in all the sights, sounds, and flavors around me. And, there is a longing to be disease free and without worry.

I believe Roget’s Thesaurus and I are more in line with the action idea of “hope”. It IS something one must aspire or do for themselves and not something a well-intended friend can give you. But… thank you for trying, my dearest ones. I “hope” this clears some things up for you.

Re: A Letter From Multiple Sclerosis

Dear Newly Diagnosed,

I know you don’t want to talk to me right now and I can’t say I blame you. I’m sure it was quite a shock, finding me camped on your doorstep that day, with my luggage packed. And I know you didn’t “exactly” invite me in, but here I am.

I’m certain you’re probably wondering how I got your address in the first place, aren’t you? Everybody always asks me that stupid question. It was easy really. I looked you up in a statistical manual, calculated your genetics and environment, crunched some numbers about your childhood illnesses, relatives illnesses, and basic habits, and I located you. It wasn’t hard at all. I chose you because I could.

Now, I’m not saying we have to be friends here. Frankly, I’d be a bit surprised if we got along very well at all. You and I are very different in many ways. For instance, I thrive on surprises, whereas you prefer to always know what lies ahead. I enjoy a big dose of sardonic humor…you prefer a kinder, more mellow approach. I see nothing wrong with pain and suffering…you try to avoid it. A good time for me is kicking ass and taking no names…you prefer a reasonable fight.

Here’s the part that’s probably really going to piss you off, so I might as well just get it out of the way. To date, no one, and I mean no one, has ever been able to evict me once I decide to move in. Oh sure, some people try to slow me down by scaring me with needles and the like, but I don’t leave. I get quiet and reflective sometimes, but I’ll never leave you totally. That you can count on, my friend.

So here’s how this is going to work with me, like it or not. I’m here and I’m not leaving so we might as well try our best to co-exist. You do some things for me, and I’ll occasionally scratch your back (and anywhere I else I choose to itch you, just for the record). I’ll give you some good days and if I like you, maybe even a few good months or years. I’ll teach you some important life lessons about not taking things for granted, which you’ll thank me for later. I’ll encourage you to get out of bed and live today to the fullest and to enjoy whatever morsel of goodness The Universe is throwing on your plate. I’ll teach you how to appreciate the simple things in life and how not to sweat the small stuff. I’m definitely gonna make you laugh sometimes, even if you don’t want to. Likewise, I’m gonna make you cry sometimes because you need to. You WILL learn to respect me or I’ll kill you trying.

If you think about it from my point of view, I’m not asking for much in return really. I just want to have a good time messing you up. A few laughs when I surprise you with being unable to walk or see. A little chuckle for me when you accidentally wet yourself because I’ve messed with your bladder. Maybe even a full, belly laugh when I make you ride around in one of those electric chairs or something. It’s all in good fun. And again, if I like you, I may not make it a permanent event.

So what do say, roomie? We got a deal? Personally I think you’re getting the better end of the stick out of this arrangement, but that’s just my perspective.

Take your time thinking over your answer. I’ve got your whole life to await your response.

Sincerely yours,

MS

I'm Having A Bad Day...

Ok, this is my second attempt to blog here today...I had already written what turned out to be a just lovely piece about having a bad day, only to lose the darn thing while trying to save it! I truly AM having a bad day!

The blog was a yada yada about being homebound, watching Dr. Phil, having Oprah tap on my nerves...blah blah blah. I had mentioned I have worn sores on my own tongue today licking my wounds, etc. I talked about "respecting" the process of relapse (I'm giving it the finger right now as I type) and a few other inspiring, yet choice words about my day. The bottom line is, I'VE HAD A BAD DAY! No reason to crap on your parade today, however.

So, in the interest of redeeming my sulking personality, I will simply include my all time favorite poem and let this day tire itself out. The poem is called, "Finding Her Here", and it is from a collection of poems entitled, "I Am Becoming The Woman I've Wanted". It is written by Jayne Relaford Brown and may I be left unscathed and out of jail if I am breaking any rules by posting it here:

Finding Her Here

I am becoming the woman I've wanted,
grey at the temples,
soft body delighted,
cracked up by life
with a laugh that's known bitter
but, past it, got better,
knows she's a survivor--
that whatever comes,
she can outlast it.
I am becoming a deep
weathered basket.
I am becoming the woman I've longed for,
the motherly lover
with arms strong and tender,
the growing up daughter
who blushes surprises.
I am becoming full moons
and sunrises.
I find her becoming,
this woman I've wanted,
who knows she'll encompass,
who knows she's sufficient,
knows where she's going
and travels with passion.
Who remembers she's precious,
but knows she's not scarce--
who knows she is plenty,
plenty to share.

The Sausage Maker's MRI Survival Guide...

OK, I’ve never actually made sausage myself, but I know some people who know some people who HAVE.

I just returned from my umpteenth MRI scan today and had an epiphany (remember I’m still on steroids, so all thoughts feel larger than life in my mind!)…I thought perhaps I should share a bit of my personal MRI experience/wisdom with you in hopes it might ease your experiences with “The Tube”. I’ll even throw in a bit of my home grown scientific knowledge blended with black magic wisdom to try to lessen your anxieties, should you be facing your very first roll in the tube soon.

If you’ve already been diagnosed with Multiple Sclerosis, more than likely you’ve experienced The Tube first hand. MRI is one of the primary diagnostic tools in use that can visualize the brain and spinal cord with accurate clarity.

The acronym MRI stands for Magnetic Resonance Imaging. It’s a diagnostic tool that’s been around since the 1970’s, but used with much frequency now for assisting with the diagnosis of MS and other neurological disorders. It can pin point and identify down to fractions of millimeters exactly what type of tissue is scanned by building little 2-D and 3-D maps or x-rays, if you will. I won’t bore you here with a long lecture on atoms and hydrogen protons, but suffice it to say, our bodies are built out of these components (along with other important crap) and these little buggers are constantly spinning around inside us at high rates of speed…tis the stuff that keeps us alive. And this “stuff” that’s spinning around is susceptible to magnetic pull, thus the “M” in MRI.

The MRI tube is composed of some hella big magnets that spin and apply a radio frequency pulse that specifically causes your own hydrogen protons to spin and in a different direction. This is the “R” in MRI.

When the radio frequency pulse is turned off, the little bugger hydrogen protons slow down and go back to what they were doing before…having their normal spinning class in your gym. But before they return to normal, they give off energy in the form of a signal that’s picked up by that humongous coil the technician puts on you and the signal is sent to a computer to convert the information into pictures. The “I” in MRI.

Now, don’t you already feel better reading that simplified science lecture?
If you’ve never had an MRI before, there are a few little pointers you might need to know BEFORE you get sausaged into the tube. First, the tube is as I said a big magnet. That means anything magnetic is a no-no in its chamber. Your radiologist or MRI technologist will go over in exhausting detail what you can and can’t wear in the tube, but I recommend just leaving the family jewels and jewelry at home. This saves a headache at the last minute having to remove the earrings, nose rings, wedding rings, and any other ring you might be wearing. Plus you’ll know where your prized possessions are…safely tucked at HOME.

Second, always wear comfortable clothing no matter how unstylish you may appear. You’re most likely going to be taking the majority of it off and donning a pair of hospital scrubs or, God forbid, the open back gown dress. You might as well be comfy just in case you’re having some nervous energy and, the technicians like to move you as quickly in and out as possible. They have a schedule to keep or at least a lunch break on their mind. If you are having to spend a lot of time unbuckling a 10th strap on your army issued boots while unsnapping and unzipping your evening gown, the techs are just not going to appreciate your wardrobe.

Most of the MRI scanners today have a great feature to help drown out the roaring sound of the magnets spinning circles around your head. They’re called headphones and the technician can play just about any type of sound or music they have available for you. I recommend taking in your own favorite CD, but not something that will lull you to sleep. Because if you DO fall asleep in the tube and start to jerk about, those headphones will contain the voice of an irate technician trying to wake you up! And keep in mind, there may be that one Nazi technician who refuses to let you listen to your homemade CD of Johnny Cash because they just need to feel in control of your destiny.

Now, on to the parts of the scan that you might find unpleasant. YOU ARE GOING TO BE HORIZONTALLY SHOVED IN A TUBE WITH VERY LITTLE ROOM AROUND YOUR BODY OR ABOVE YOUR HEAD. It’s just going to happen that way. So if you’re claustrophobic, this can be a major problem.

My very first MRI in 1998 did not go well for this very reason. About 8 minutes from being finished with the scan, I began to hyperventilate and begged to be shot out of the tube. The technician calmly told me if he were to remove me at this juncture, they would have to repeat the entire test and couldn’t I “just hang on a few more minutes?” Those last 8 minutes felt like 8 days! I had poo pooed the offer of IV Valium at the time just prior to the test because I didn’t want to seem like a light weight…looking back, I think I would have let them jam a needle full of the tranquilizer in my jugular to have avoided that claustrophobic feeling.

So if you have issues with being in tight places (and you will be in one!), talk with your doctor or radiologist about what they can offer you to get you through it BEFORE the scan. I personally have found it helpful NOT to open my eyes once I’m in the tube. If I can’t see how close my nose is to rubbing the top of the tube, I can fake myself out and think I’m on a beach somewhere…or at least a beach that has a jackhammer pounding up the sand. You’ll thank me for this tip, I’m sure.

And speaking of tips, let’s just get the needle issue out in the open now, too. If your doctor orders your MRI “with contrast”, you’re gonna get poked. And more likely than not, your doctor WILL order contrast so they can check to see if you have enhancing lesion activity, which indicates inflammation.

How the needle issue comes into play is this: To check a certain type of MRI picture, dye is needed to see it. The dye is called gadolinium and it crosses the blood brain barrier effectively and mixes in with the fluid in the brain, “enhancing” areas of inflammation and the like. That’s a pretty simplistic explanation, but suffice it to say, it is necessary sometimes to have this dye to get the best look inside your noggin.

Now, you are probably wondering, “Why can’t I just drink the gadolinium?” Just accept it. You can’t. It’s going to go into a vein and the only way to get it there is with a needle. Chant your mantra, pray, deep breathe…do whatever you need to do to get through your needle phobia on this one. It can be an important part of your scan.

And finally…make sure whatever itches, burns, needs adjusting or touching is done prior to your being stuffed in the sausage tube. You won’t be allowed to move once the test begins. I always have the technician “line me up” and wait a minute before telling me he is starting my scan, just so I can make sure I will tolerate the positioning of my arms and legs I have pre-chosen. I simply don’t like to be uncomfortable if I don’t have to be. It’s my nature.

Depending on what type of MRI scan your doctor has ordered will determine just how long you're going to be in thetube. If the doc orders a full brain and spine, with and without contrast, pack a lunch! There's a whole lotta looking to do on that one. I've had one of these and it took about an hour and 45 minutes. The typical brain MRI with or without contrast will be less than an hour. Remember to use the "facilities" (ie., bathroom) before hopping gleefully on the rack and rolling in the tube...you're bladder will thank you for this tip. I will close this entry now and return to whatever it was I was doing earlier today before I started writing this…I wish I could at least recall what that was! Oh well, it couldn’t have been that important.

**Note to self: Always turn off the stove top before sitting down to blog…you’re running out of good pans!**

Oops! I Crapped My Pants...

Does anyone recall the old SNL/Saturday Night Live days in the 80’s and 90’s when the show used to be funny? They would run these hilarious commercials, which were take offs from real TV ads…except with the SNL sickly twisted skit weaved in?

One of my all time favorites was a commercial skit called, “Oops, I Crapped My Pants”, which was a skit about adult diapers for bowel incontinence. If you’ve never seen it, here’s a link to view the piece if you’re so inclined:

www.hillison.com/snl/oopsicrappedmypants.html

I have always praised SNL’s comedy for the ways in which they could take such potentially devastating topics and turn them into humor more palatable for our fragile psyches. Let’s face it…bodily functions are just another part of life and we might as well embrace the humor in our body’s unpredictable way it keeps us real.

I have always held my head up high with pride when answering a resounding, “NO!” to my neurologist’s questions about bladder incontinence. I don’t have it and I don’t want it. I’ve got a sphincter that could hold back a small ocean.

But I’m very aware some of my MS friends are not so fortunate when it comes to pride in peeing. Bladder incontinence is an everyday occurrence for them because of their Multiple Sclerosis. And I offer my empathy in advance if you ARE afflicted with bladder incontinence currently because of MS or any other “leaky” disease.

As someone with MS, I will admit I do have my own “other” little hidden (or at least I think it’s not glaringly obvious?!) bodily function problem. Chronic diarrhea. Yes, you will read in most of the literature the majority of MSers generally experience chronic constipation because of medication side effects and/or neurological damage. But there are those of us who suffer nearly daily diarrhea and urgency. And I’m not talking about a leisurely stroll to the bowl to lighten the load here. I’m talking BOWEL URGENCY! There are some days I would stomp a small child to death just to assure I “make it on time”. I’ve even considered permanent track shoes sewn on my feet, but this isn’t conducive for comfort reasons.

You may be thinking by now, “Bowel and bladder urgency or incontinence is no laughing matter”, but I’m here to enlighten you with the idea maybe, just maybe, it should be. After all, we Mser’s can’t help it. The working pipes we were born with are a thing of the past and more than likely, there’s little you can do to change your bowel/bladder problem now. I know if you did have that Almighty Power, you’d have already waved your magic wand and tightened up your own ship. But you can’t. Your MS didn’t come with a Harry Potter wand. It instead came with a bunch of “crap” (sometimes literally) you wouldn’t wish on your worst enemy.

For me, embracing my “potty humor” is a way to pass through what used to be embarrassing circumstances. I say used to be because I finally realized the embarrassment part was optional. Is it really that intolerably gross to accept what goes in must come out…one way or another? And aside from the physical complications of incontinence and/or urgency, who REALLY cares if your bladder or bowel leaks? Truth be known, probably only the “leakee”.

I encourage you to address your bowel/bladder issues head on with your medical provider and to do all you can do to maintain health with these issues to avoid other complications like skin breakdown or infections. But once you’ve done everything in your power to keep your body safe from disaster, let it go. Find the grain of humor in the big sandbox called Multiple Sclerosis. You thought bodily functions were funny when you were a kid…laugh so hard you pee your pants once in a while or, in my case, laugh so hard you “shart”. Uh...that’s a cross between a sh** and a fart…you get the picture.

I Was Accused Of Cheating On My Neuro Exam!...

If you’re like me and living with Multiple Sclerosis, you’ve by now learned to “adapt” in many ways you never thought possible or even wanted to in response to the physical challenges this lively disease provides. Hell, if you’ve been alive and breathing for at least a decade, you’ve had your own experiences of adaptation! That’s just a natural process our little pea brains learn to do during life…or we risk dying. Adaptation and manipulation are two of the greatest skills we CAN learn in a lifetime if we’re lucky. But I was never so shocked to learn adaptation was a “naughty” thing in some circles until I was abruptly told I was cheating on a recent neurological exam!

Currently, I am in a double-blinded study with a local research project in Seattle. The study is measuring the effects of a drug called Rituximab (brand name Rituxan) in the potential use of preventative treatment for MS. The drug was originally created and used with pretty good success in treating a disease called “Non-Hodgkin’s Lymphoma”, which is another lovely disease that creates tumors because of too many B-Cells. The current MS Rituxan Study is measuring the effects the drug may have on B-Cell activity in Multiple Sclerosis and hopeful decrease in exacerbation and lesion load of the MS brain.

Now that’s a lot of technical mumbo jumbo about the study, which really isn’t the point of my blog today. But I thought I should mention it just in case you are interested in researching and learning more of what is out there on the cutting edge of the MS studies. And at some point in the future, I may lapse into personal dissertation about my understanding of the biophysical process of MS, which is really a mixture of scientific knowledge and black magic!

So, back to my original topic: Cheating on my Neurology exam...

If you’ve ever seen a neurologist or even been in a research study, you have no doubt been tested, probed, prodded, invaded, examined, poked, and made to do physical contortions, which would leave the Flying Wallendas looking like amateurs. My favorite test (or at least until the research team ruined it for me!) is placing the little, white pegs in the triangle board as fast as you can with one hand, then removing them. This is done with the pressure of a stopwatch. It is meant to measure your eye hand coordination, dexterity, and see if you sweat under pressure. Unfortunately, I carry some weakness and dexterity deficits in my left hand because of the MS, but I have learned to ADAPT. I tend to utilize my nearly useless right hand for more gross motor movement issues (let’s face it, I was born a lefty and will die one) when I have to. I lack coordination in the hand, but it can “pass” as useful when needed for important things like picking my nose or flipping the finger…and you thought I was using the "technical" term gross motor movement here, didn’t you!?!

Anyway, I was deeply invested in my anal-retentive, OCD ways of “acing” my neuro exam because I am invested in being the best MS patient my research team has, when out of nowhere the researcher shouted, “Hey! You’re cheating!” This startled me from my focused concentration mode and actually caused me alarm.

First of all, I only “cheat” when I know I’m cheating and I felt I was being wrongly accused of a crime by someone with a degree in lab rat analysis! This hardly seemed like a fair and accurate account of my progress and I immediately became indignant.

“Excuse me,” I said in my most condescending tone. “I AM passing this test, aren’t I?” I find it’s always best to take an offensive stance during medical testing, which may eliminate having your butt hanging out of a gown later down the road.

Alison (I’ll call her that to expose her identity) proceeded to calmly explain to me like I was a child that I had been picking up more than one peg at a time to place them and the test was to pick up only one at a time and jam them individually into each speck of a hole. And, if that wasn’t enough, I would not be allowed to remove them and toss the pegs into the bin grabbing more than one at a time. Any straying from this process was “cheating”. I was cheating on a neurology exam. Oh, the logic of the wrongly accused!

Dear Alison did not fully understand my own background in behavioral sciences as I launched into a full-blown dissertation on adaptation, manipulation, and the higher functioning brain processes needed to “cheat”, as she called it. I tried to explain to her in my “cheating”, I was actually demonstrating a much more highly evolved neurological process and one I was certain her double-blinded, control study had not taken into account. I was, in fact, “acing” my neurological exam!

I sat in my smug and intellectual state for what seemed like minutes, basking in my own glory that I had somehow furthered this researcher’s limit knowledge of MS, behavioral adaptation, in some sort of Einsteinian theory that might have wide sweeping affect on her young career. I knew I was right. I felt it. I had mastered a superior state of functioning. I had adapted to the challenges of MS with gusto and glory and was the master of my own ship. There would surely be an annotated note in this study about me.

Young dear, wet behind the ears Alison looked at me calmly with a slight smirk to her left side of the lips and replied simply, “Whatever. Don’t do it that way.”

I can still faintly hear the air wheezing out of my balloon deflating…

How To Stay Sane While Losing Your Mind...

Today, I write once more from the world of steroid confusion/agitation. Please don’t let the calm nature of my typing lead you astray…I AM AGITATED!

As I mentioned earlier in “Steroids 101”, the drugs used to combat a relapse or exacerbation often come with their own set of problems. I am currently experiencing severe insomnia, tremor, agitation, hyperglycemia (that’s a high blood sugar brought on by Prednisone use, which is NOT diabetes, but caused temporarily by the drug), some electrolyte imbalances (those are the good chemicals pulsing through the body on any given day, which are sort of like minerals…again, simplistically speaking), and an unfortunate rebound of left arm pain.

Now, I’m not telling you this to gain sympathy (although I do wish my mother were taking care of me right now!), but instead, to “enlighten” your knowledge of what can happen when in relapse treatment. These drugs can be a doozy and, depending on your own body’s reaction, there’s pretty much an entire ball field of possible side effects. It’s always important you talk to your doctor/neurologist BEFORE taking any new prescriptive drug, but especially steroids, so you can at least have some idea what “could” happen and take steps to prepare for possible bad stuff. Knowledge is the key to successfully navigating the path of Multiple Sclerosis. That and a wicked sense of humor!

So, how does one stay sane while feeling as if they are losing their mind?

First of all, you must remind yourself the current drug side effects are temporary. It’s not rocket science to understand once you stop taking a drug that is making you feel like crap, more than likely you’ll STOP feeling like crap. Most of us also have an internal feedback system in our bodies that is pretty good at rebalancing and adjusting to bad situations over a period of time. This same feedback system is the one that lets you drink yourself into a stupor on a Friday night, but be able to return to work on Monday feeling refreshed and proud. Your body will clean out the trash you dump into it if you let it.

Second on the To Do list is making certain you are doing everything possible that soothes you. Let’s face it. If you have MS, your nerves are already shot! There are some missing threads there in your brain and spinal cord. You are already potentially susceptible to an altered nervous system response and there’s no reason to agitate this further. Do whatever you can to “quiet” your nervous system, whether that is a warm bath, a book, a visit from a friend, or simply sitting in silence and drooling. It will do you no good (and potentially even create more problems in the long run) if you FORCE yourself to keep up with the demands as usual. Send the kids to grandma’s house. Stay home from work. Make your spouse do the dishes for once. Your nervous system is begging you to finally just stop the chaos and quiet down. And if you need some kind of freaky permission to stop, consider this your note from your mother.

I have found when in steroid madness, it is helpful for me to have some kind of hands on task to occupy my time. But of course my hands still work, so this may not be an outlet for you. I often get out a puzzle that I can leave up and pace back and forth to, reminding myself Rome wasn’t built in a day and completing the darned thing is not a test of my endurance or cognition.

Right now I am coloring…yes, I DID say coloring! I went to the local junk shop/department store and bought one of those 2 foot by 3 foot murals, which have obviously been drawn by someone who had way too much time on their hands. The design is pre-drawn and the task is to fill in the lines with markers. I DO believe it is a work of art…I don’t think I will feel that way once I’m off the steroid high.

Ultimately, the point I am trying to make here is you are NOT losing your mind if you are having side effects from your medications. It’s the drug whispering sweet nothings in your ear. And once you are off the steroids or on lesser doses, you’ll look back at the entire situation like it was a bad date…you may have done or said something embarrassing or felt really uncomfortable, but hopefully you may never have to “go out” with steroids again. And if you do, be prepared. Have an exit strategy.

Now back to my manic “art”…

God Bless The Healthy Folks!...

Today in Seattle, Washington, the local MS Society Chapter in cooperation with a host of other businesses and organizations held their annual MS Lifelines/MS Walk to raise money and awareness for Multiple Sclerosis. I didn't attend this year for obvious reasons you may have already read. Frankly, I was afraid I might steal the show with my current steroid confusion and agitation!

I have attended a previous MS Walk since my diagnosis. The picture here is of the backs of my coworkers after we "walked the walk" in 2004...they forbid me from exposing their faces out of fear of repercussion! We made T-shirts with our catchy office nicknames, got a few pledges, and strolled down the Burke-Gilman Trail with several hundred other walkers, enjoying what turned out to be a beautiful, Seattle day in April. I imagine the scene today on the trail was much as it was two year's ago...minus my group of cronies, however.

I am always profoundly moved by the number and types of people who turn out for these fund raising events. There are people attending who are diagnosed with MS, family, coworkers, friends, businesses, doctors, nurses, children...the list goes on and on. And each one has their own connection to why they are there en mass to support such a cause. Folks often talk about feelings of support, pride, encouragement, understanding, guilt, compassion, etc., as their own personal reason they are in attendance. Heck, once I was even casually told by an attendee he simply needed another free T-shirt!

But whatever the motivation or driving force, the end result is basically the same: they are doing something to help someone. Pure and simple. We all have that innate need. To help. To support. To try. God bless the healthy people who can and do lend their time and energies to such worthy causes!

I have no idea what awaits me around the corner in my travels with Multiple Sclerosis. Tomorrow I may be blind or unable to walk or perhaps, simply another day of the "usual". But just for today, I can walk, I can see, and I am alive and I, too, need to fulfill a function. Whether it is donating a few extra bucks to the Greater Washington Multiple Sclerosis Chapter (and you can do so on line via your own local chapter at

http://www.nationalmssociety.org ), walking a fundraiser when I can, or simply chatting on line with a friend who is struggling with their diagnosis/situation currently, all off these actions connect me to the bigger picture so to speak. You don't have to have money to "help" (although it is a primary gain of the fundraiser events) or to fulfill your own need and function. Sometimes just cheering from your wheel chair at a walker in an event is the most wonderful support you can offer to the cause. Sometimes it is telling your story to someone else who feels lost in the quagmire of MS. Sometimes it is volunteering an hour of your time to stuff envelopes at your local chapter.

Whatever you find to "give", do it. If you are reading this, you and I aren't dead yet and hopefully won't be for a very long time. So, three cheers for the healthy people who walked today in the name of the cause! Hip Hip Hooray!

But Is This "Normal"?...

Let's face it, my friends...there is absolutely nothing "normal" about Multiple Sclerosis!

When I was first handed the diagnosis of RRMS in April 2003, it followed a routine cervical spine MRI to check on a problem I had been having with degenerative disc disease. Or at least that's what I thought had been the cause of my nerve pains for the previous 4+ years. I had been diagnosed with herniated disc disease in 1998 after collapsing at work with severe pain in my neck and shoulder. And, following my first roll in the tube (that's what I call the MRI scan process) after my collapse, I was shown a couple, bulging little areas on my cervical discs which had to be the culprit of the pain. There was nothing else to be seen. No tumors, no cancer, and certainly nothing big enough in my opinion to cause such excruciating pain. Just a couple benign blips like you might see on a balloon that got stretched too far. The radiologist even threw in a brain scan at the time (although I doubt at any kind of discount rate) just to be sure all was clear.

My first treatment options for my "blip discs" were to be sent to physical therapy and take some oral Prednisone. I took the medication and went willing to physical therapy, basking in the idea I could receive weekly massage now and stip my insurance company into paying for it. Slowly over the course of 3 - 4 weeks, the pain did subside and I returned to my usual activities of daily living, minus the weekly massage.

Over the course of the next 5 years, I would have periodic bouts of nerve pain in my left arm/shoulder, which would sometimes move around to my lower back and hips. Being a woman of size and no friend of Jenny Craig, I assumed the back pains were probably being brought on by bad habits and stress. So I would return to my ARNP, get my script for Prednisone, and shuffle back into the physical therapist's off for more of that lovely massage, traction, and body mechanics training. Since I wasn't willing to drop the weight wrapped on my hips or make other lifestyle changes, I just accepted these pains were the cross I must bear and I would no doubt live with them until I croaked. Small pay off in my estimation to eat and live how I wanted.

Oddly however over that five year span, the pain episodes intensified and lasted longer and longer, causing me to take higher doses of Prednisone (and more massage). I began missing work because I couldn't sit or even sometimes walk. Sometimes the only way I could find minimal relief from the arm pain was to wrap my left arm over my head in a bizarre contortion. This positioning was not a conducive one in assisting me to gain points with my employer!

At some point in these years, my hair stylist discovered a shocking event, telling me in horror I was now developing a rather large patch of baldness on my crown, and half of my right eyebrow had mysteriously disappeared. Not wanting to be over reactive, I simply changed my hair style and my attitude and decided I would wear a barret if push came to shove and maybe take up speaking with a French accent.

Then came the periods of blurred vision if I over heated, which believe me I have tried to avoid most of my life! Not the blurring part, but the over heating. I like to use my sweat wisely. There also came periods of feeling so darned tired it took too much energy to yawn. I had a bout of hypoglycemia in the summer of 2002, developed strange sores in my mouth, and had PMS so badly I may have made a federal terrorist watch list. And all of these symptoms came and went at random with no real connecting thread I could make sense of.

What I had neglected to connect to my ARNP in 1998 and later neurologists was a period of severe vertigo I had just before my dramatic collapse at work: I had experienced a 3 week episode of dizziness, which resulted in a diagnosis of Labrynthitis (an inner ear disorder) from a doctor I had only seen one time in the past. I now know this was most likely the beginning of my MS, in spite of no radiological evidence to support this theory at that time.

Finally in April, 2003, I was rolled in the tube for that "just checking" glance at my spine once again and a large spinal lesion found it's way into my pictures. Not only was the spinal lesion glaringly obvious, I was told my brain now had "typical" lesion patterns to support the diagnosis of Multiple Sclerosis. I had "The Dawson's Fingers"...those fanning, little fingery-like white spots that line the corpus callosum (center area) of the brain and some other patchy white spots spread around inside my noggin.

It was official. Someone had stolen the "P" from my "MS" and I could no longer blame my symptoms on hormones or bad habits. I was handed the diagnosis on April 15th, 2003, just in time to celebrate sending my check in to Uncle Sam and pay my taxes!

So, why have I so painstakingly dragged you down my road of symptomology? To let you know and give you hope THERE IS NO CLASSIC PATTERN FOR MS AND NO ONE DIAGNOSTIC SYMPTOM. There is absolutely nothing "normal" or typical about Multiple Sclerosis and you have my permission to slap the friend, family member, or doctor who tries to tell you there is! My MS was diagnosed on the basis of pain, which if you review the literature, you will see "pain" has only recently been considered a major factor of MS symptoms in the past decade. Typically, you will hear stories of optic neuritis, weakness, tingling, burning sensations, bladder incontinence, vertigo, dizziness, balance problems, blindness, constipation, cognitive deficits, spasticity, fatigue, contractures, and so on. And if you have MS, you may or may not have ever experienced more than one or these symptoms or you may be experiencing them all at once (and bless your heart if you are!). Just because my friend Bob is blind in one eye doesn't mean I, too, will eventually be in the dark.

MS is not NORMAL, but if you are experiencing it, YOU are unique. Your symptoms are yours and mine are mine and of the approximately 400,000 Americans diagnosed and living with Multiple Sclerosis there has never been one, set pattern of "typical" symptoms. If it's a problem for you or interfers with your functioning, treat it if you can, but know your symptom will effect you individually and uniquely.

I believe it is in sharing of information with one another we find common ground in uncommon places. I hope you've found something useful here. I think I've worn myself out now and need to schedule a massage...

STEROIDS 101

Today I want to talk about steroids. "Why?", you may be asking. Mainly because they are currently pulsing through my veins right now in high doses and pretty much the focus of my attention!

Let me first start out by saying a disclaimer so I can avoid making the Internet scandal news: I am not a doctor. I can only speak from my own medical experience and in doing so, I hope the information is helpful to you. That being said, let me proceed to impart my personal knowledge of trips down the road of steroids.

To date there appears to be only one effective treatment to combat relapse in Multiple Sclerosis and that is the use of high dose steroids. If you've had a serious relapse yourself, perhaps you've been given an IV drug called Solumedrol. Solumedrol or Methylprednisolone is a high-powered anti-inflammatory steroid that mimics the actions of our body's own natural glucocorticoids. It is the "big gun" used to lessen inflamed lesions and hopefully decrease relapse symptoms. It is NOT comparable to the type of steroids mentioned in the baseball scandal and I very seriously doubt player Barry Bonds has even considered it as an adjunct to breaking records!

Because it is believed flair ups or relapses (choose your own term here) in MS are the result of inflammation somewhere in the nervous system, steroids become the logical choice in shrinking/deflating/combating the problem. IV Solumedrol works quickly and systemically across the blood brain barrier, knocking out inflammation in its path. Most often, it is given in doses of 500mg - 1500mg IV daily for anywhere from 3 - 7 days, depending on the severity of the relapse. My personal experience has varied based on my neurologist's recommendations--I've had a three day round and a six day round in two, separate exacerbation periods. The results have generally been quite fast and effective, usually having a lessening of symptoms within 24-48 hours.

Because Solumedrol IS so potent a drug, it tends to give your body some mixed messages. For instance, it sometimes takes over so well, your body stops producing or has a lessened production of its own glucocorticoids. This is where the lesser, but still effective drug, Prednisone, often comes in to play. Prednisone is a by mouth steroid which has similar effects as Solumedrol but on a less dramatic basis. I have taken oral Prednisone immediately following each series of IV Solumedrol and I've been prescribed just Prednisone in high doses without IV's in the past as well. The fancy pants term your doctor will use is "taper"...they call it a Prednisone taper when this drug is prescribed following IV steroids. Usually prescribed in doses ranging from 40mg - 120mg, my neurologist has me take Prednisone orally for anywhere from 7 - 14 days while gradually decreasing the dose amount. A typical taper for me is Prednisone 60mg for 4 days, then 40mg for 4 days, then 20mg, and so on. This "taper" allows my body to readjust to producing its own chemicals and hopefully avoid a rebound return of flair up symptoms.

Now, on to the good stuff or the dirty, little secrets of steroids your MS friends may neglect to tell you in chat or your neurologist may simply gloss over. STEROIDS HAVE A WIDE AND SWEEPING ARRAY OF SIDE EFFECTS AND AFFECT EVERY PERSON UNIQUELY AND INDIVIDUALLY. Again, I can only speak from my own experience here, but steroids have been both the savior and the curse of relapse treatment for me! As I mentioned earlier, Solumedrol does have a profound effect on my relapse symptoms quite quickly and easily. And when you're having trouble walking, talking, seeing, peeing, or just being, steroids are like candy from heaven. You may beg your neurologist for a piece of this candy. I'm certainly not above begging.

However, what you may not read in the fine print of steroid use are the many side effects that can come hand in hand with your beloved candy. For instance, when I am in a round of steroid treatment, I develop severe insomnia and I'm not just talking about having trouble sleeping. I SAID SEVERE INSOMNIA...once to the point of being awake continuously for over 2 days! Steroids provide me many "interesting other" symptoms, which seem to be dose related. I become rather manicy with energy (please...I'm not bitching here because I'd trade mania over fatigue any day of the week!) and have cognitive deficits, making my attention span about an inch long. Sometimes my thoughts and speech become rapid and pressured and I have great difficulty concentrating on even minor tasks. And when I am on steroids, it is NOT the right time to make any kind of life altering decisions! In fact, I often feel I shouldn't even be around people because I am not in control of my moods, words, or thoughts in my usual anal-retentive ways... I become unfit for human consumption.

And then there are the "other" side effects of severe agitation, severe indigestion, ravenous appetite with weight gain, tremor, and yes, even psychotic features. If I don't take more medications to combat the steroid side effects, I can spiral down a slippery Alice In Wonderland tunnel and find myself talking to Alice herself and any other character that pops into my imagination. Most of the drugs prescribed for my steroid side effects are psychiatric. I am prescribed Risperdal, Zyprexa, and Klonopin in various doses as needed to keep me from stripping my clothes off and running naked down the street. My moods become so incredibly labile and, combined with the agitation and insomnia, these drugs are necessary to keep me "sedate". Fortunately, the psychiatric medications are only needed short term as the dose of Prednisone is slowly decreased and the side effects tend to lessen.

When I am in an MS relapse and treatment, I have developed a Plan of Care with my friends and providers because the treatment period can be nearly as harrowing as the relapse itself. I develop a written medication schedule, a phone list, and let others know I may need them to check on me frequently (just to make certain I am not psychotic naked in the street!) either in person or via phone. My medications, phone numbers, and medication schedule are prominently displayed for easy access because my cognitive deficits often impair my memory greatly and if needed, friends can keep better track of me if they clearly know my plan and have access to it.

If you have MS, but have not had to have any relapse treatment, I encourage you to develop your own "Steroid Plan" in advance of needing treatment and to ask your doctor important questions about your treatment and medications prior to needing them. If nothing else, it could save you a lot of suffering and hassle down the road.

Thus ends today's lecture on "STEROIDS 101".