Sunday, April 30, 2006

More Prozac Please!...


I need to see my psychiatrist because I am convinced tiny, little elves are entering my home when I am gone to work or perhaps when I am sleeping. These are not the "nice" elves or cute garden gnomes either. No, these are the little nasty elves who are obviously sneaking into my home and leaving clutter and mayhem wherever they go!


I am certain my theory is correct because I have no recollection of creating the clutter myself. I got up this morning completely "grogged out" from my nightime medications and entered my kitchen to find a stack of precariously towering dishes waiting to be washed and put back in their proper place. I do not remember using these dishes let alone piling them on the countertop. And I certainly have no recall of leaving magazines and papers in my living room...this is just NOT something an OCD person would do! And who has been wearing my clothes and stuffing them in the laundry hamper without running a load of wash? And what about the the carpets that are desperately needing to be vacuumed?!?


Now, I have taken into account I am the only one who lives in my home and also the only one who has a key. I'm not exactly sure how these little devils are getting in, but I'm working on that theory. It is just completely unlike ME to create such a mess without immediately cleaning or tidying the place up, so it has to be "someone" else's fault.


Oh sure, one could say my return to work has been a bit taxing and stressful and perhaps I have allowed myself to "overlook" some of these household duties. And one could say given the level of exhaustion I am experiencing when I finally DO return home, I might be simply "ignoring" some of these tasks in an effort to recoup some of my drained energies. And one could also make the case that I have too many other things of concern to focus on right now besides keeping up with housework...what with so many daily medical appointments, etc.? And one could even say I simply don't care much anymore if these tasks get done because there are so many other "bigger" mountains to climb right now in my life.


One could say a lot of things...I'm going with the sneaky elf theory, however.

Saturday, April 29, 2006

Top 20 Things You'd Love To Say Out Loud At Work...Or At Least I Would!..

1. I don't know what your problem is, but I'll bet it's hard to pronounce.

2. I don't work here. I'm a consultant.

3. Ahhh...I see the screw-up fairy has visited us again...

4. I like you. You remind me of myself when I was young and stupid.

5. You are validating my inherent mistrust of strangers.

6. I have plenty of talent and vision; I just don't give a damn.

7. I'm already visualizing duct tape over your mouth.

8. I will always cherish the initial misconceptions I had about you.

9. The fact that no one understands you doesn't mean you're an artist.

10. Any connection between your reality and mine is purely coincidental.

11. What am I? Flypaper for freaks?!?

12. It's a thankless job, but I've got a lot of Karma to burn off.

13. Yes, I am an agent of Satan, but my duties are largely ceremonial.

14. Do I look like a people person?

15. This isn't an office. It's Hell with fluorescent lighting.

16. Sarcasm is just one more service we offer.

17. Can I trade this job for what's behind door #1?

18. Too many freaks, not enough circuses.

19. Chaos, panic, & disorder--my work here is done.

20. I thought I wanted a career; turns out I just wanted a salary.

Friday, April 28, 2006

Glowing With Gadolinium...


Tomorrow I go in very early in the morning for my 100th MRI...OK, that's an exageration. I really haven't had 99 MRIs, but I am nearing 15 in this lifetime! And that's just since 1998.


The Rituxan Study I participate in does a MRI every month as follow up to the two infusions I received in November 2005. I have one MRI every month for a year. But because of my recent relapse, my study neurologist has recommended I have another MRI so my CURRENT neurologist can "have a peek"...it seems the Rituxan people can't share their information outside of their own circle because the study is a double blinded study. Even my neurologist I see regularly can't access the study's data, which seems a bit odd.


Soooo...this week, I will be getting TWO MRIs at TWO different facilities so TWO separate neurologists can have TWO separate "peeks" into the TWO hemispheres of my brain. Sounds way TOO compilcated TO me!


My only nervousness about the whole ordeal is a fear I may have a slight glow from the gadolinium...

Thursday, April 27, 2006

The Trauma Of Shopping...And Other MS Tales...


OK, I’m finished “enlightening” your mood and mine with all the talk about death and dying…it’s time to move on to more pressing matters, like clothes shopping.


I have decided the clerks (or as they like to be called at my local Unnamed Department store, “consultants”) in most clothing departments are simply paid liars and stalkers. Yes, I AM calling these wolves in sheep’s clothing LIARS AND STALKERS.


I was “forced” to go shopping for a new outfit this week because I had nothing to wear (unless you call jeans and T-shirts “something”) to a fancy banquet dinner tonight, which is being put on by the local MS chapter. It’s something called “Girls Night Out”, and four area neurologists are speaking at one of Seattle’s fancy-shmancy restaurants overlooking Puget Sound. I’m told there are over 100 women attending as well as my old and new neurologist. So, as you can see, I’m under some pressure to look “good”!


I invited a dear friend to attend the event with me (because I’m not one who likes to go to anything alone)…one of my many friends who doesn’t have MS…and she seemed a bit excited about the event. Now you have to understand, this SKINNY friend looks good in everything she wears and could get away with wearing jeans and a T-shirt if she wanted to and everyone would think it was the latest dinner wear fashion straight out of Vogue. I, on the other hand,cannot. I would look like I just got off duty at the local pub waiting tables.


So as I was saying, my friend got a bit excited about the event and made the mistake of telling me she was “getting her hair cut and trying to decide what outfit to wear”. This sent me into a panic. Not only was she sprucing up the “Do” with a trim, but she also had way more than one outfit to choose from in deciding what to wear! I had one outfit to choose from and “birthday suit” just didn’t seem appropriate.


In an effort to try and not embarrass my friend, I decided I would have to do the one thing I loath about as much as I do going to see a gynecologist, and that is shop for clothes. I hate clothes shopping, which may be why I have so few in my closet, aside from the jeans and T-shirt designs. Nothing ever fits my frumpy structure nor does any piece ever look like it does on the mannequin. And don’t even get me started on my thoughts of who designs fat lady clothes! They are some sick nazi people…


I finally bit the bullet two days ago, and went to my area department store…the one with the “Woman’s Department”, which is just a cover up and nice way to say “Fat Lady’s Department”. I’ve always wondered why this department is either in the basement of most stores or at the farthest end of the shopping area. After all, if you’re fat or “plus size” as they like to call obese, you sure as heck don’t want to have to walk clear across the store to findyour department! Again, I believe the same people who design fat lady clothes are the same torturous folks who decide where to PUT the fat lady clothes in the store…they think walking a mile will help us shed some pounds I guess.


So I wound my way through the isles of pretty little juniors and misses clothing, mounted the escalator going down, and located the Fat Lady Department in the bowels of the basement. As I got off the escalator, I noticed two department store clerks/consultants eyeing me…they smiled at me knowingly and probably thinking, “Houston, Apollo has landed”. I became their version of fresh meat.


When I go clothing shopping, I like to perform this act alone. It’s stressful enough without having someone else tagging along and making suggestions for what they think would look good on my pillar-like body. As a matter of fact, ANYTIME I do something like the equivalent, I prefer to do it alone…like the gynecologist, for instance. But somehow unbeknownst to me, there must have been a large magnet surgically implanted in my obese butt which was attracting one of these department “consultants”…she seemed to follow me in a rather creepy way and much too closely all around the store!


Every time I would pause to look at a particular outfit or piece, this “consultant” seemed to pop up out of nowhere to tell me just how “fabulous that would look on you”. She scared the bejesus out of me at one display when she seemed to rise like a Phoenix from the center of it to tell me, “You should definitely try that on. Itwould look just fabulous on you”…I was starting to get a bit nervous.


After being followed around for what seemed like an eternity by this “consultant” (who I’m sure had to be trained by Homeland Security or at the very least the CIA…her stalking skills were just too honed), I finally just started grabbing anything I thought might fit so I could escape into a fitting room ALONE and throw this woman off my scent and trail. She insisted on carrying my chosen items into the fitting room for me and I panicked for a moment, thinking she might try to stay in this tight, closet of a space. Much to my relief (and fear I might be silently murdered by this stalker and left unfound in the closet for days), she did exit the fitting room.


By this point, I had to sit down on the tiny, little seat in the fitting room and take a deep breath…I was already exhausted and hadn’t even tried anything on yet. I couldn’t have been seated more than a minute when I heard the sing song voice of my “consultant” just outside my door asking, “So, how’s it looking? Do you want to step out and try the larger mirror out here?”

“No”, I said calmly, “This one will do just fine, thank you”. I decided it was best to remain polite…this woman could actually be a serial killer for all I knew.


“Well let me know if you need any help then. I’ll be right out here”, she replied cheerily.


Oh my God! She really was stalking me! I was going to HAVE to buy something or figure out how to crawl through the air conditioning duct over my head to escape. I eyed the vent above and decided it was made that small for this very reason…no fat lady could EVER squeeze their way into that tiny opening. DRATS! I would be forced to buy something!


I arose from my seat with a new founded determination to find something that might fit so I could run calmly out the exit with a new purchase in my hands and ditch my “consultant”/stalker. It was my only choice. I began throwing pants, jackets, and blouses from their hangers, trying to match up something I would at least not embarrass my friend with. I decided on a pair of black pants, a white blouse, and a lavender jacket…it would just have to do.


I pressed my ear to the vented door of the fitting room and listened for the sound of my “consultant”/stalker breathing on the other side. I heard nothing. I tried to peer through the slats of the door, but couldn’t see out or make out any shadow on the other side. I cautiously opened the door and stuck my head out first to eye the tiny hallway…she wasn’t there.


“Hmmm”, I thought, “Perhaps she has moved on to stalking someone else”. I toyed with the idea of continuing my search for a different blouse to go under my jacket (which I actually liked…go figure!), but decided not to risk it. She could still be out there somewhere and weaving through the isles again might just attract her attention…sort of how salmon swimming upstream catch the eye of a hungry bear.


I decided to make a beeline directly to the cash register counter and “get the hell out of Dodge”, so to speak. I ducked out of my fitting room and saw she was nowhere in sight, so I more confidently strode down the small hallway and back out to the showroom area. I peered out into the large expanse of clothing hanging neatly on racks, and again, saw no signs of my magnetic “consultant”/stalker. Perhaps she went on break?


Before stepping back out into the show room with my expectant purchases hanging from my arm, I made eye contact with another sales clerk/”consultant” who was standing at a register ringing up another customer. She smiled at me in a comforting sort of way and I plotted my easiest escape through the racks of clothing to get to her.


I was almost to the register undetected when I felt a heavy hand touch my shoulder from behind, nearly causing me to have a heart attack, and that familiar sing song voice say, “Oh those will look so good on you. Let me ring you up over here”.


DRAT and DOUBLE DRAT! My escape plan was foiled! She had caught her prey once again in her snare…and she was lying to me and stalking me right up to the kill.


I eventually paid for my purchases (not without a lot of “Ooo’s and ah’s” from my personal “consultant"/stalker however, delighting in telling me just how “fabulous” each piece would look on me as she slowly completed my purchase) and made it safely out of the store into the light of day. I found my car, tossed my new clothes into the back, and sat quietly trying to regain my composure. I had somehow managed to drain a few hundred out of my bank account in such a short and traumatic time and I really had no idea if anything I bought actually fit or looked “OK” on me. I had been sucked into the evil vortex of shopping once again.


Today I have a hair cut appointment scheduled with a new stylist because my old stylist of nearly 8 years just moved away. I don’t think I can withstand all this trauma in one week just to look good for a silly MS banquet! If I should die from all this excitement, hopefully someone will at least think to bury me in my new clothes…

Wednesday, April 26, 2006

A BRIEF RANT...


I'll bet if 400,000 men in the United States were diagnosed with Multiple Sclerosis AND MS was guaranteed to cause ERECTILE DYSFUNCTION, by now there'd be a damn pill to take versus these crazy shots!
I'm just sayin'...

Euthanasia Part III...Subtitled, "The Act Of Dying By Omission"...


**NOTE: All names, basic demographic information, and identifying symptomology in the following story have been changed to protect the healthcare privacy of individuals involved.**

One of the hardest cases I was ever asked to evaluate was that of a woman named “Betsy”. Betsy was a 57-year-old female, diagnosed with Chronic End-Stage Renal Insufficiency, and she suffered a plethora of physical pains and problems as a result of her disease. She had neuropathy (nerve pain) in both her legs and hands, edema (severe fluid accumulation) in her legs, pressure sores on her buttocks and thighs the size of a fist, and she was wheelchair bound. She also was diagnosed with Type II diabetes, which was causing progressive blindness and extremely poor wound healing. Betsy had been in constant pain for well over two years and she was aware there was no “cure” available to her…only palliative care for her discomfort. Her tissues were slowly rotting away and it would most likely be only a matter of time before she died from infection. Betsy also went from her nursing home 3X/week to renal dialysis because her kidneys had ceased to function altogether several year’s ago. Her mind remained intact, but her body was slowly dying.


I was asked by the nursing home staff to come evaluateBetsy because she was refusing to continue her dialysis treatments, which would surely kill her in a matter of days (Chronic End-Stage Renal Insufficiency is not a terminal diagnosis, unless dialysis is NOT performed). The care staff felt Betsy must have become severely depressed (and therefore, suffering a mental disorder) and she must be refusing dialysis because she was suicidal. They wanted me to lock her up in a psychiatric hospital as a means of “forcing” Betsy to comply with her dialysis treatments. Of note: Betsy had no documented history of depression or any other mental disorder for that matter. She also remained competent to make healthcare decisions for herself.


I made my usual investigative calls to Betsy’s children and discovered she had been discussing with them the idea of stopping dialysis for quite some time. Her children were not “happy” with their mother’s decision, but all agreed they would support her choices because they could hardly bear to see her in so much pain. The children also confirmed Betsy was of “sound mind” and had no prior history of depression.


I went to visit Betsy and, after informing her of the legalities of my interview and possible outcomes, we talked for nearly an hour. I completed a basic mental status exam with her and found no gross evidence of mental disorder. She even laughed when I carefully broached the subject of auditory hallucinations saying, “Well, I only hear YOUR voice right now. But since I can’t really see you too well, I suppose you could be in my head!” I soon discovered Betsy was far from “crazy”.


We then discussed her understanding of what would happen if she did not receive dialysis. She told me, “I will die and that process will be painful, too. But at least I will know IT (increased physical pain brought on by complications of renal toxicity) will end eventually. I have suffered THIS pain long enough.” Betsy was making a conscious and competent decision to control the only thing she must have felt she had left to control: her own death.


I advised her I did not find evidence of a mental disorder and, therefore, could not legally force her into a psychiatric hospital. I thanked her for her time and told her I felt fortunate to have met her. She was too blind to see the tears well up in my eyes, but she must have sensed the hesitancy in my handshake. Her last words to me seemed so simple, but somehow so complex. She told me assuredly (and probably to ease my mind), “You know, I’m NOT committing suicide here. I’m just refusing medical care.”

***
I have a Healthcare Advanced Directive in place. I consulted an attorney shortly after I was diagnosed with MS to draw up legal papers protecting my rights should I become incapacitated and unable to voice my wishes because of physical illness. My directive gives the medical community explicit instructions to withhold extraordinary means of prolonging my life and also to withhold nourishments, antibiotics, etc. It lets my doctors know they can and should administer only palliative care for comfort measures. I am, in essence, refusing medical care before it is even needed or offered.


So, am I instructing the medical community to allow me to commit suicide in the face of a terminal illness or irreversible incapacity? Am I simply committing suicide by the willful act of omission? Am I acting against the laws of nature (and perhaps a higher God?) to NOT accept any treatment available to prolong my body’s existence? Am I truly “suffering” if I am not consciously aware of my condition?


I know what my thoughts, feelings, and responses are to the above questions. Have you thought about yours? If not, I encourage you to explore your thoughts and feelings about these issues BEFORE a medical crisis forces you into contemplation.


Someone once said (and pardon me for refusing to reveal my source), “It is in dying we truly learn to live and we die a thousand little deaths before we close our eyes to eternal sleep.” The diagnosis of Multiple Sclerosis is just one of those “thousand little deaths” I have experienced along my path. My world and my worldview was changed overnight when the neurologist told me these four words, “You have Multiple Sclerosis”. It has been in my effort to truly live from that “death” I have had to confront my own fears and ideas about dying.


I entitled this 3-part blog “Euthanasia” really just to capture your attention. I didn’t think you’d read it if I called it something like “Dying With Dignity” or “The Pros and Cons of Suicide”! Let’s face it…none of us want to focus on death, dying, or any other terminal subject. We want to believe like children that we are immortal. But “stuff” happens and usually that “stuff” is when we least expect it.


I don’t know how or when I’ll die. Heck…knowing me, I’ll probably get hit by a bus and killed before I die from any kind of illness! But facing my fears about death and particularly MY death has helped me realize how I choose to live.


I am living with MS, but my Spirit and innate drive for freedom, peace, and joy will not be diminished by this disease. Each relapse, I worry if the disability I am experiencing at the time will be permanent. And each symptom that has become permanent, I have learned to adapt, but not without struggle. In each struggle, I am forced to look beyond the disability and weigh its consequence. And in each consequence, I discover what qualities of my life are most important.


For me, those “qualities” of life are far more important than any quantity. I already know I will not live forever and I have accepted MS will most likely slowly erode many of the qualities of life I cherish. But I still somehow look toward a future with a desire to live as free and peaceably as I can with laughter and joy.


My only hope is when Death comes knocking on my door, I can calmly invite Her in and share a cup of tea like old friends…just like I have done with Life.

Tuesday, April 25, 2006

Euthanasia Part II...Subtitled, "It Just Isn't Legal In These 50 States"...


In 1986 and 1987, my grandmother was diagnosed with ovarian cancer. She chose to try standard chemotherapy and also underwent surgery to try and rid her body of this horrible disease. Neither was successful.


By April 1987, my grandmother was again hospitalized with irretractable pain and a spreading of her cancer to other organs. She was by no uncertain terms “suffering” from disease. She was admitted to a Catholic hospital where her doctor suggested yet another surgery and treatments to try and lessen her pain, but was told these options would not prolong her life. My grandmother considered these options, then willfully made the decision to stop eating or taking fluids instead. Within a matter of days, grandma Goldie died in this hospital.


My grandmother had become quite close with a couple of the nuns and a priest who visited and cared for her while hospitalized, even though she herself was not Catholic. I found it odd these dedicated people of faith did not attend her funeral. When I inquired further, I was told they were not “allowed” to attend BECAUSE of their faith. My grandmother’s willful act of refusing treatment and nourishment was considered SUICIDE by the Catholic institution and they could not condone this act. My grandmother’s death certificate does not list “suicide” as cause of death, however. Ovarian cancer is what is legally listed and also what I believe caused her death.

***
Euthanasia is not legal in any of our great 50 states. In “legal-eze”, the act of euthanasia involves a doctor injecting a patient with a lethal dose of medication and this act is generally considered murder, unless said doctor is a vet! However, even veterinarians are only allowed to practice this act on non-human patients. It has always seemed a bit twisted that I can put my dog or cat to death to relieve their pain and suffering, but this is not a choice for humans.


So, when is the act of making a conscious choice to end your own pain and suffering from disease considered suicide versus dying with dignity? This is some deep and murky water I am about to tread in, so here I go!


All 50 states have laws about suicide and most incorporate these laws into some type of mental health code. In Washington State, for instance, RCW71.05 and RCW71.34 state (this is a very rough interpretation) it is against the law tokill yourself if you are suffering from a mental disorder. There is no set standard for the interpretation of what consists of a “mental disorder”, however. And it is generally believed anyone who is contemplating suicide probably HAS an underlying mental disorder, unless proven otherwise. This is the law I work under and the branch of Washington State government I enforce. So as you can see, I will be treading lightly when discussing this issue.


Most states define suicide as the willful and intentional act of ending one’s own life and it is generally accepted this act is the result of violence toward self. On average in the county I work in, approximately 200 people are ruled death by suicide each year and these deaths occur from self-inflicted gun shot wounds, jumping, carbon monoxide poisoning, overdose, hanging, fire, drowning, etc. It is not difficult to make a connection between the violence inflicted to self as the cause of death. There is also investigation into the history of a mental disorder and indications of despondency at the time of death before being ruled a suicide. In other words, if you have a documented history of a mental disorder and leave a “good-bye note”, chances are your death WILL be ruled a suicide, no matter what method was chosen to end your life.


Now this is really splitting legal hairs, but basically if you weren’t “crazy” by history or at the time you chose to intentionally or willfully end your life in the State of Washington, your choice of death would not “technically” fall under this Washington State statute. But trust me…if you are choosing to blow your brains out or die by any other obviously violent means of ending your life, someone (often from my office) will certify you “crazy” and lock you up to protect you! Violent, self-inflicted death is just not considered OK by anyone in this state.


So what about people who don’t have a mental disorder (or history of such) and STILL choose to end their own life by willful intent? What about people who are suffering relentless pain and disease? Is this an OK option to end their suffering by willfully and intentionally ending their lives? Here is where the waters get even deeper and where I am certain to attract the attention of religious followers.


Even though our constitution and founding fathers made every attempt to write law to “separate church and state”, the fact of the matter remains this has NEVER happened in the history of the United States government. After all, the majority of the constitution’s founders came to America to ESCAPE religious persecution! They formulated laws based on their specific moral codes, which were deeply rooted in their religious beliefs. This still goes on today.


Before I go any further, let it be known I am NOT RELIGION BASHING HERE. Hold your emails please! I fully support everyone’s need and right to organize around common beliefs, even if those beliefs may differ from my own. And I generally support the legal limitations of our laws because the laws are/were written based on the majority of the moral codes in our country—the people would surely rise up and protest if they weren’t! But our laws surrounding death, suicide, euthanasia, assisted suicide, death with dignity, right to die, and even murder do not and have not adequately addressed “suffering” and what constitutes a reasonable end and/or definition of intolerable suffering.


Currently Oregon State is the ONLY state in the Union who has addressed this issue via their Death With Dignity Act, which passed in 1997. But even this law makes it nearly impossible to choose death as a means of ending physical suffering from disease. There is an unlimited list of criteria that must be met BEFORE a person can choose this option to end their suffering in Oregon.


First, the individual must be an established resident in Oregon, so don’t go thinking you can just pass through one day and “end it all” with the blessings of this law.


Second, the individual must be of age 18, capable of communicating healthcare decisions for themselves, and diagnosed with a TERMINAL ILLNESS that will lead to death within 6 months. MS is NOT considered a terminal illness, however sometimes complications of MS CAN be terminal.


Once all of these criteria are met, the individual must find an attending doctor who is willing to participate with them in the Death With Dignity Act. (Good luck with this one because few physicians will.) The person must prove they have met all the necessary qualifying criteria to the physician in Oregon (no, your PCP in New York can’t participate), THEN make two oral requests to this doctor 15 days apart, stating they wish to enact the Death With Dignity Act. But that’s not all…the individual must also provide WRITTEN request to this doctor signed by two, unrelated witnesses. But still there is more!


The attending physician must then consult with another doctor to verify the diagnosis and prognosis of the individual, determine the person’s capacity to make healthcare decisions (if they think you’re impaired, you must agree to a psychological evaluation), and FINALLY inform the individual of feasible alternatives to doctor-assisted suicide. This is all done just to get a LETHAL PRESCRIPTION that you must administer yourself. If anyone else gives it to you, it is considered murder or in it’s least noxious definition, “euthanasia.” And by the way, just to refresh your memory, neither murder nor euthanasia is approved of in the United States…someone WILL do jail time for either act. Oregon remains the only state where physician-assisted suicide is not a criminal offense. At least for now it isn’t.


Whew! So where am I heading with all of this? It’s probably easier to die from the result of disease than to prematurely end your life before the disease kills you! And, there is really no legal loophole around this. You just will not have the blessings of the government OR your life insurance carrier if you choose to end your own suffering by self-inflicted means.


Now, for those suffering from horrible pain or extreme disability from Multiple Sclerosis, you may be saying, “Frankly, I don’t give a rat’s ars. I’m going to do what I’m going to do about this issue”, and I have to say that is your choice. If there is anything I have learned from my 20 years of experience in the psychiatric field it is this: If someone is determined to end their life, there is little that can be done to stop them. And when I use the word “determined”, I am not talking about those still contemplating ending their own life. I am talking about the decided.


My only advice to those who are at this stage in their disease process and in contemplation is that you not make a hasty decision. If this is the decision you are contemplating to end your suffering, be absolutely certain you have explored all other alternatives, whether that be spiritual, mental, or physical alternatives.


What I have often told “suicidal” patients who are “suffering” from a mental disorder is this: “Why today? Have you even tried this, this, and this? Why not give yourself the benefit of the doubt and try these things (which they usually haven’t) and say, in six months to a year, if you still feel this way, you can always kill yourself then. There’s obviously no hurry since you have the rest of your life to do this.” Sometimes this approach has worked and sometimes it has failed.


I can only strongly implore you to, at the very minimum, obtain a Healthcare Advanced Directive and Durable Power of Attorney in the event your disease renders you incapable of making your own healthcare decisions. But even these legal tools will not express your wishes or end suffering prematurely as long as you are CAPABLE of making your own healthcare decisions. They will prevent you from being hooked up to machines, tube feedings, and from being kept alive forever in your incapacitated state if this is not your wish, but ONLY (under most conditions) if you are considered terminal or with no reasonable likelihood of recovery. They WILL eliminate a lot of media coverage, however, if your family argues what your expressed wishes are/were…unless of course you live in Florida.


There are simply no good answers or choices when it comes to ending your life prematurely due to intolerable suffering because there is still so much stigma, emotion, and legality attached to this issue. We don’t want to talk about it because it is easier to ignore since death usually comes unexpectedly to most and we all want to believe we are somehow immortal. And I certainly can’t offer you any legal or spiritual advice on the matter. Those issues are between you and your lawyer and you and your Higher Advisor/God/Maker/Guru.


My hope is you will at least begin to THINK about these issues and make conscious choices for yourself while you are still capable of doing so. Perhaps you already have and I commend you. But for some, these choices are not so black and white when faced with the desire to end suffering and the innate reflex in all of us to live. May you simply find peace in your decisions.

***
All this talk about death and dying has just depressed me…but now that I’ve put THAT in writing on the Internet, I won’t even be allowed to take advantage of Oregon’s Death With Dignity law should I even WANT to! Someone somewhere will say I was “depressed” in 2006…oh well. Perhaps a trip to spend some money will improve my mood today AND I think it might even be cheaper than Prozac!

Monday, April 24, 2006

Euthanasia, Part I...Subtitled, "How Dare I Blog About This?!?"...


Oh my! How dare I be diagnosed with a chronic and potentially debilitating disease and even utter that word in my blog?!


Euthanasia. How dare I put that word in Ethernet print and continue to work in a job where I get paid to preserve life?
Euthanasia. How could I dare raise a topic in blog that is sure to offend and, at the very least, create a stir of controversy and response?
Euthanasia. I am living with Multiple Sclerosis…that’s how I dare to begin this topic.
***
My good friend and colleague recently had to put her dog “down”. Sweet Maggie, a black Labrador retriever, had been suffering with a disease for several weeks. She became listless, had difficulty urinating, and would whine in pain at times. She was an older dog,but certainly not at the end of a Lab’s life span.


My friend loved Maggie dearly and treated the pooch as a family member with great compassion and care, taking her frequently to the vet for any treatment the doctor could recommend. There was nothing the vet could do to prolong or improve Maggie’s condition. Eventually Maggie became unable to stand or walk and she whined in great pain. My friend agonized over what to do, but decidedly chose the only humane thing she could: Maggie would have to be euthanized to end her suffering.


It was a sad day around the office when we learned Maggie was “put down” because everybody loved Maggie. Several people gave my friend cards of condolence and I think a few even shed a tear or two. We grieved the loss of my friend’s companion yet all agreed, it was the only humane thing left to do.

***
In 1997, I went home to visit my parents in Nebraska and, on the day I was to leave and fly back to Seattle, my mother suffered a severe brain aneurysm. She quickly became unconscious in my arms and stopped breathing. I went immediately into “medical mode” and did rescue breathing while waiting in internal panic for an ambulance to respond.


My mother was sent via Life Flight from a nearby hospital to the closest medical center 100 miles away. It took two, long hours of driving to finally reach her bedside. She had been placed on life support and several tests had already been run. A polite, but grim neurologist told me the news…my mother had a large cerebral aneurysm rupture in the back of her brain, which caused irreparable hemorrhage. Her basic reflexes were gone and her EEG (brain waves) showed minimal signs of activity. I knew what he was telling me: my mother was essentially dead, yet the respirator and IVs continued to pump on, giving the illusion of life and that she was breathing.


I had the horrible task of explaining the neurologist’s words to my then 9-month pregnant sister. My sister, myself, and my father (who was preparing to be transitioned to a nursing home, which was why I was in Nebraska in the first place…to help my mother move him in) were my mother’s closest next of kin. Because of my father’s failing condition, my sister and I were also my mother’s power of attorney, which meant we would be the ones to decide the fate of her life support.


After two and a half days of remaining a constant fixture at my mother’s bedside and repeated EEGs continuing to give the same result, we made the agonizing decision to suspend her life support. My mother was brain dead by all Western medicine standards. It seemed surreal that just three days prior, she had been a vibrant, full-time employed, excellent cook and seamstress, caretaker of my father, age 64 year old mother.


On February 11, 1997, in the early afternoon, I stood at my mother’s bedside, surrounded by family and clergy, and watched as machines were unplugged and my mother’s heartbeat slowly ceased to blip on the screen. My mother died just like she had told us she wanted to: with dignity and with little suffering.

***
Euthanasia. How dare I write about such a serious and controversial topic in an MS blog? Because I have lived it.


Euthanasia by Miriam Webster’s definition is a noun, meaning 1. gentle, painless death or, 2. putting to death in this way esp. to relieve suffering. It seems pretty simple as defined by Webster…it’s a benign noun.


But recently in Western culture and especially in political arenas in the USA, euthanasia has become a verb, or the “putting” part of the definition in #2. It has been discussed as an “action” word and all too often condemned with little understanding on the part of the damning party.


No one questioned my friend’s decision to have her dog euthanized. That was humane. Allowing an animal to suffer unnecessarily is actually a crime in some states if it is seen as neglect.


One or two people whispered silent condemnations about the “haste” at which my sister and I made the decision to “pull the plug” on our mother, believing a miracle could have happened if we had only waited longer. Most who knew my mother however, readily agreed it would have been what she wanted…it was the humane thing to do. My mother HAD talked with us about her end of life wishes after all (and oddly she spoke superficially to me about this in the week preceeding her death). In essence, my sister and I chose euthanasia for our mother based on her wishes.


So why has this term become such a dirty word and whispered in hush-hush ways when we talk about disease, and especially Multiple Sclerosis? How do we determine when someone is committing suicide and when they are choosing euthanasia? (Suicide is, after all a noun also, meaning “the act of killing oneself intentionally”…this is straight out of Webster as well.) Where do we draw the line between assisting someone in ending their suffering by death ( again the “putting” part of the definition of euthanasia) or committing the act of murder? And ultimately, how do we determine what constitutes suffering versus quality and quantity of life issues?


Because I strongly believe these topics have remained “in the closet” far too long, I have decided to put my own head on the chopping block and share with you my personal views.


Some of you will disagree with me wholeheartedly and emphatically and that is your right to do so. Please feel free to leave your comments about these topics in the comment section. But please refrain from condemning me to your hell if I don’t share your viewpoint and I will refrain from condemning you to mine.


Some of you will strongly relate to my ideas and you may comment also, with the understanding I am not your spokesperson or your personal Dr. Kevorkian. I do not condone suicide because I am bound by Washington State law to say that.


And still, some of you will continue to search for your own answers regarding these issues in an attempt to find your way through these murky waters. It is you, dear reader, I hope will take liberty in the comment section because you are the people I will learn from the most.


I’m hoping I will be able to condense my ideas/views on this topic into 3 parts, but I AM a bit “windy”, so you’ll just have to check back and see. I probably also will not add these parts consecutively as even I need a break from too much deep thought now and then! LOL Besides, I’m sure there may be something funny that occurs in my MS life that I will have to interject and share.


More to follow…

Sunday, April 23, 2006

Taking A Blog Break...


If you read yesterday's blog entitled, "What Was I Thinking?", you already know I foolishly over did it in MS terms! Today, I am recovering from my yard escapades, so sitting with the computer is a bit taxing.


I want to share with you a poem I wrote a few summer's ago while sitting on the bank of a beautiful river...it was written the summer after I was diagnosed with MS, during a period of questioning why and how life was going to be in my near future.


Transformation


It is dawn
On the McKenzie River

As I watch the sun

Gracefully feather its light

Amidst the treetops.

The ancient sound

Of the river's flow

Awakens inside me

As I sit still

In silent awe

On its shore.


If I listen quietly,

I can hear

The river's story

Of wildness

And freedom

As it rushes from its Source

On chartered path

To the ocean.

Where each drop

Will find its way

Back into the clouds

And return on the wind

To form a new river

Of life again.


I am one with this

Wildly, vivacious flow.

I am the River,

The Source,

The Ocean.

My course is set

And my sound

Of ancient wisdom

Cannot be silenced.


I will roar,

And echo,

And dance carefree

Along my path

Of transformation.

Saturday, April 22, 2006

What Was I Thinking?!?...


Note the photo...I had a friend of mine snap a picture of me today right after I finished a marathon yardwork tour and dragged myself into my house, crawling like a snake on my belly!


WHAT WAS I THINKING?!? Well, here's what I thought: It was such a gorgeous day here in Seattle with no rain (which can be a rare event in the Spring) and a bright blue sky. I thought to myself, "Self. It's beautiful outside and you should go out and enjoy it. Do a little yardwork and sit in the sun for a bit. After all, your right shoulder is feeling improved, so screw the left one. It will just have to tag along, but you'll be OK. It's been weeks since you got out and really did anything physical since this relapse hit. You can do it! Get out there! Work on that yard...you'll feel soooo much better if you do, Self."


So, I did. I put on my yard wear, which is a long-sleeved T-shirt full of holes, blue jeans with layers of old paint on them, ratty tennis shoes, and an old crusty jacket I had to dig in my closet to find. I had on the "power clothes". I noticed digging around to FIND the power clothes wore me out a bit, but I trudged on...looking back, I now know this should have been my first sign, but I remained gleefully oblivious to my body's beginning cries.


I set out for the yard, which consists of mostly dandelions, grass, and the Washington State Vine...black berry runners. I forged on into the shed and began bringing out all the tools I would need to clean up the yard. I had to sit down and rest at this point, which should have been my second sign.


After a brief rest, I began tackling the "yard"...there were weeds to pull, black berry runners to cut and remove, edging to do, and grass to mow. Now, being the rather obsessive-compulsive person I am, I would begin one task and have to complete it in it's entirety before I could move on to the next...it's just the way I do things! I began to notice early on in the weed pulling stage, my left arm was going to be useless as I had no grip or strength in it to pull much of anything. My right arm jumped right in and began ripping the weeds out of the groundin a skillful manner, even though I am left hand dominant. My left arm just went along for the ride.


After only a short period of weed pulling with my wanting-to-be-buff right arm, it began to experience some fatigue and weakness. I paused again briefly, gritted my teeth, lowered my head in a head butting stance, and became determined I WOULD finish the yard work today. I would be invincible and Multiple Sclerosis would lose this time! I had a strange voice in my head (no, I don't hear voices on a regular basis) saying, "You're gonna lose this time, suckaa!", and I finished my weeding and moved on to some mowing and edging.


By this time, I had nearly lost all feeling in my left arm, so using the weed eater was very interesting! My arm went completely numb from the vibration. I somehow convinced myself this was a good thing...if I couldn't FEEL it, it wouldn't HURT...and I began grunting out loud with every exertion. My right arm decided at this point to cut it's losses and get out of Dodge...it began to go numb as well.


So here I was in my yard, looking completely "gimped out", but determined I would not give up until I had completed my task. After all, I was already dusty and dirty, so I might as well gut this out and finish. I paused about every minute to rest and leaned on the weed eater for support. Then my left leg decided it wanted out, too, and I plopped in ungraceful style flat on my hind end...it was quite a sight I'm sure.


As my body deserted me one limb at a time, I literally crawled up the hill on my hands and knees to prevent me from rolling down it. I'm sure people walked by on the street down below and wondered what the crazy lady on the hill was doing crawling in her yard...I didn't care at this point...I needed to get to higher ground! As I made the final ascent and summit of my hill (which seemed more like a mountain at the time), I smelled a putrid aroma and realized I had managed to put my knee in a pile of cat crap somewhere along my upward crawl.


I had no choice now...there was nothing left to do but fling myself on the top of my slope, lay in the sun, and laugh until I nearly wet myself. What WAS I thinking???


My body and MS had successfully humbled me into submission...there would be no Wonder Woman tactics with this disease. At least not today. Yardwork was over and I would just have to accept this. My fingers were swollen like sausages on both hands and the wonderful numbing I had been feeling in my arms was being replaced with my friendly burning nerve sensation, reminding me it had never really left after all. My left leg was literally finished playing a supportive role and made my right leg carry IT to the house.


BUT, I had finished most of the work I had set out to do and I'm sure my yard looks fabulous. Now if I can only manage to crawl to a window and hold myself up long enough to gaze at it, I'm certain I'll enjoy the fruits of my labor! I haven't been able to get to the window yet, however. Typing on a laptop on the couch is the best I can do today...What was I thinking?

Friday, April 21, 2006

Hurry Up And Wait...


I know I promised to blog something hilariously funny yesterday, but...well, I just had a hard time finding anything funny after my Rituxan Study research appointment in the morning. You see, my old neurologist had to tell me my MS was progressing and I had developed new brain lesions. It just wasn't a "funny" kind of day.


But then I got to thinking, "Surely there was SOMETHING about my day that was laughable, wasn't there?", and here's what I came up with: My medical rant called Hurry Up And Wait.


Why is it whenever I go to the doctor's office I have to hurry up and wait? Who started this phenomenon and made it a code of ethics for physicians that they are to make their patients wait for an uncomfortable amount of time (usually at least 10-15 minutes is standard practice) before going in to see them?


These days whenever I make a doctor's appointment, I get some high tech voice recording or a live caller from the scheduling department calling me a day in advance to remind me of my appointment time and requesting I be there EARLY, anywhere from 5 to 15 minutes. This is so I can check in and sit in the lobby to WAIT until my name is called to be escorted back to an exam room.


Now, I'm fully aware no one is going to come hopping out from the back at exactly my appointment time (or earlier just because I'm already there!) to greet me and take me back to an exam room. This just doesn't happen. Instead, I am forced to sit in a lobby full of sick people and/or crying sick children and wait. I call this room Waiting Room Number 1. I believe this part of the appointment time may be to check my immune system...after all, if I don't "catch" anything at my doctor's office from the cesspool of available germs and viruses in Waiting Room Number 1, I must be doing pretty well in the immune system department!


Usually about 5-10 minutes past my appointment time (and after some diseased person has already sneezed or coughed in my direction) a nurse or assistant will come out from behind door number one with a harried lookon his/her face and say, "I'm so sorry. The doctor is running a bit behind today. Come on back and I'll get you in a room." This is where I have found it does no good to ask, "What is a bit behind?" This assistant or nurse is well trained to lie to me and respond with, "Oh, 5-10 minutes Dr. So-And-So should be right in."


So I go back to what I now call Waiting Room Number 2 and take my seat. The magazines and available distractions in WRN2 are usually a pared down version of what's available in Waiting Room Number 1, minus the sick people. These magazines are more "specialized". Things like Golf Digest or other headline topics I know nothing about are neatly tucked in a magazine rack in the wall. I have a theory about magazines in WRN2...they shouldn't be there. Anytime there are magazines in WRN2 it already means a long wait. After all, why would you NEED a magazine in WRN2? Because you are going to wait a little bit longer and would like something to read...

Finally, after what can be anywhere from 5-20 minutes, a doctor will knock politely on the door and enter WRN2. After an exchange of a few niceties, I whip out my list of questions and concerns and begin my bombardment of quickly spewing the writing on my list, in hopes of getting a few answers to these questions. I know the hour glass was turned over just before Dr. So-And-So entered, so I am on a time crunch now to get everything in as quickly as I can...after all, Dr. So-And-So's time is very valuable and he/she has an entire waiting room of sick people left to see.

After about 15 minutes with Dr. So-And-So (and knowing the last grain of sand has probably fallen from the upper portion of the hour glass), the physician will subtly signal my time is up by standing. This is where I receive whatever remedy to my problem we have decided upon. Dr. So-And-So hands me a script or a lab sheet or something in writing and instructs me to come back in so many days/weeks/months. There's always the courteous, "It's good to see you", which I doubt is really true, and Dr. So-And-So disappears into the bowels of the hallway.

If I total up all the time I have waited just to have my private 15 minutes with Dr. So-And-So, it usually comes out to be somewhere around a 1/2 hour to 45 minutes...sometimes longer. This includes the instructed voice recording time asking ME to be there 15 minutes before my appointment time is scheduled.

Now if I'm really sick, this time frame of waiting can nearly kill me...I have crawled out of the comfort and sanctity of my bed where I was warm and cozy just to Hurry Up And Wait to ask a doctor questions I could have easily submitted in writing and just stayed in bed. Or perhaps I could have simply talked with the doctor over the phone and gotten the same answers.

I don't like Hurry Up And Wait...it annoys me. I think physicians appointments should be more like college class. You remember when your professor was late more than 10 minutes, you could just walk out? I think doctors should be on this same plan...10 minutes late, the patient can walk out, and they are not billed for the appointment. AND, there is a window on your way out where another physician (perhaps one that is being punished for being tardy) is waiting to answer your questions and provide your treatment at no cost to you...sort of like a drive thru type situation.

As a disclaimer, I have to say here not ALL physicians are on the Hurry Up And Wait plan. For instance, my psychiatrist has never been late for an appointment in the past 6 years and my wonderful new neurologist lets me email my questions to her without having to make an appointment. They seem to have missed the lecture in med school about making their patients wait for them.

I have decided the next time I am made to play the Hurry Up And Wait game with a physician, I am going to play dead in their office...I will sprawl myself out on the exam table and appear unresponsive and when Dr. So-And-So begins to panic and slap my checks to wake me up, I will come to mumbling, "Oh wow. I think I had a near death experience waiting to see you. I've been here so long...what day is it?" I'm certain this will not change Dr. So-And-So's habitual behavior of making his/her patients wait, but I'll sure feel better about it!

Wednesday, April 19, 2006

Is This As Good As It's Going To Get?...


OK, here are the cold, hard facts...the reason I was relatively "quiet" yesterday on the blog is because I have been feeling very apprehensive and pensive about my current situation with my most recent relapse of Multiple Sclerosis. There. I've admitted it and said it out loud to an entire audience...I think I'm supposed to feel better now, but unfortunately I don't.


I have been waiting patiently for the "remitting" part of my Relapsing and Remitting MS diagnosis to kick in and it's just not happening quickly enough for me this time. I am now going into my 6th week of symptoms with this episode and I have grown impatient.


It's true, I have returned to work, but not without a major physical struggle on my part and it's wearing me down. It is taking all the energy I can muster up just to get there, let alone "be there" for the clients I see. My fatigue level remains fairly constant and my concentration seems poor. The pain in my shoulder/arm is hovering just below intolerable. And to make matters worse, I woke up yesterday morning with a "new" pain in my RIGHT shoulder, which feels like someone is twisting a vise on my neck and back muscles! I suppose my right side just couldn't leave matters alone and had to act up to get in the picture too...


Now please forgive me if I am beginning to sound just like that whiny MS patient we all know who never has a good day and can only focus on what's wrong in their life versus anything that might be good. That's not the point I'm trying to make here. Where I'm going with this is to that place none of like to talk about or be in...that place of limbo we all feel at some point in our disease process...that place where we begin to worry and say to ourselves, "Is this as good as it's going to get?"


Let's face it. We've all been there at one point or another during our diagnosis and it pains me to admit I am there now. For the past week, I have awakened each day fully aware little change has occurred in my body on the path of wellness and I've been quietly asking the Universe, "Is this as good as it's going to get?" The question has been nagging me in the back of my mind and occupying a great deal of my subconscious time. It has been occurring consciously as I have struggled to physically keep up with the demands of my days. But until today, I have not voiced it out loud, so here goes: IS THIS AS GOOD AS IT'S GOING TO GET?


Hmmm...I sat here at the computer for about ten minutes awaiting some Divine Intervention or perhaps a "Great Ah Ha" to wash over me. Nothing. Nada. No visions or magical insights. No angels or voices from heaven. Only me, my computer, and my unanswerable question. IS THIS AS GOOD AS IT'S GOING TO GET?


If the truth be known, I already KNOW there's no answer to my question right now. Only Grandmother Time will tell me the answer and she seems slower than a seven year itch at this very moment! I wish I could pick up a phone, dial her and say, "Yo Granny. Is this as good as it’s going to get?" I think I might only get a busy tone when I dialed, however. I'd have to get in line behind all the other 400,000 MSers in the USA who already have her on speed dial. Not to mention the other thousands of MSers around the world who are already waiting in line on the phone tree voice mail system.


So, I continue to wait without an answer or sign. And, I continue to worry and wonder what lies ahead. I also can't help but think about what my life may be like if I have to live with these current symptoms forever. And each time I have gone through this process, I grieve a little more and let go a little more. I know my recovery is out of my hands right now and there is little I can do physically to influence or change my current symptoms, short of more medications or other suggestions my neurologist may have. Some would choose prayer at this juncture, which I am not apposed to. Some would seek alternative treatments or medicines, which might help. Some would become overwhelmingly depressed and stop functioning.


For me, I have found talking about my concerns and voicing my fears out loud seems to lessen the power the "big monster" in the living room has on me. Being honest about how I am feeling opens the door for me to FEEL how I'm feeling and not stuff unwanted negativity inside me. Speaking my truth empowers me to reach beyond my fears and grasp what is real. And my reality in this moment is I am alive, I am still functioning, I am still experiencing a positive quality of life, and I am still motivated to continue to believe this, too, shall pass. It always has. I know that doesn't mean it always will, but it's important for me to remember IT ALWAYS HAS.


Someone once said, "Laughter is the best medicine". Or at least Reader's Digest did anyway. When I cease being able to laugh in my life, I believe I will truly cease. So...tomorrow I laugh again and I know I will find something hilariously funny to blog about!


I think this is the point where you are supposed to say, dear reader, “Thank you for sharing”, and then we go have some coffee and doughnuts...

Tuesday, April 18, 2006

Just A Warm Thought...


Today, I am a person of few words...which for those of you who know me, please do not panic! I'm fine...just not my usual verbose self.


I decided to send you flowers today and share the beautiful bouquet my dearest friend, E.B., brought me this past week. I am so lucky to have such wonderful friends and supportive people in my life.


I'm also going to share with you the words of Mary Oliver, a gifted poet and painter with words. We can all use a little inspiration now and then:




The Journey




One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
at the very foundations--
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice,
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into to the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.

Monday, April 17, 2006

Wonder Woman On Steroids...(Note The Photo), and NO, that is NOT Me!...


Yesterday, one of my "skinny" friends was complaining about having gained 3 pounds recently and how disgusted she was in her eating and exercise habits...I nearly choked on the head of the chocolate Easter bunny I was inhaling! How dare she beauch to me, of all people, about her silly three pounds, when I am suffering from having just packed on 13 big ones from my recent steroid binge?!?


"Three pounds. What a light weight," I thought, as I listened to her skinny mouth rant on and on. I can gain and lose three pounds in one day just by binging or going to the bathroom...what was she so worked up about?



Eventually, after a brief bout of resentment, I was able to muster up some empathy for her situation. After all, proportionately between us, three pounds could feel like a lot of weight on her skinny thighs and hiny. And just because I now had 13 pounds to lose just to get back to being simply OBESE, was no reason to be offended by my friend's weight issue.



We eventually moved on to talking about exercise...and yes, the fat lady IS going to discuss exercise and its importance in Multiple Sclerosis. Being over weight should not inhibit me from speaking what I know to be true!



Exercise has become a dirty word to me in the past decade, but it was not always so in my earlier years. When I was in high school and college, I was actually an athlete and a well-trained one (believe it or not...I have photos to prove it!). But somewhere along the way I stopped exercising for reasons I can't really remember. I suppose once I stopped competing in sports, I may have lost my "drive" to force myself to exercise even when I didn't want to.



Whatever the reason I stopped daily exercising, I also continued to eat the same as I did in college and I even picked up a few other bad habits along the way. The weight began to settle around my hips and gut, but this didn't seem to bother me in the least...I was happy with my sedimentary life. I could much more easily change my ATTITUDE about my body than motivate myself to get out the door and exercise!



Once I was diagnosed with MS, I began a panicked soul searching into my dilemma over my unhealthy ways...3 years later, I'm still soul searching, but hopefully coming up with some ideas on how to curb some of the dysfunctional behaviors and promote other healthy ones. Exercise has been a major focus and topic during these three years.



Now I have to brag a little bit here because I DID walk the 1/2 Marathon in Seattle the year I was diagnosed in 2003...the 13.1 miles nearly killed me, however, from lack of appropriate training and I spent 2 weeks combating my exercise "hang over". I had walked the 1/2 twice before without much of a problem (and was over weight then, too), but had to come to terms with the fact the MS WAS going to limit some of my activities and I could no longer forcibly MAKE my body do anything like this again without proper preparation.



This year, a few friends and I are planning to do the 1/2 Marathon again in Seattle. It happens in November each year, so we have over 7 months to train steadily for the event. Before my recent relapse, I had already begun the weekly walks to build up endurance and distance. My dear friend and neighbor is walking with me, so forcing myself out the door was and is a bit easier because I enjoy her company.



But this brings me back around to the idea of the importance of exercise with MS (you thought I'd forgotten, didn't you?). What I HAVE learned over the past 3 years regarding exercise and my MS is, I DO feel better getting out and moving on a regular basis. I tend to sleep better, have a bit more energy, actually eat less, have less stiffness/spasticity in my joints and legs, and have an overall better sense of well being. SO WHY DON'T I WANT TO GET OUT THERE AND GO???



I believe I have developed a pattern of inertia in my life, which is a behavioral issue combined with a physical state of being. I have "trained" my body to remain still and I have "trained" my mind this is OK. A stone won't roll without a push and it rolls best if it's on an incline...this is a simple fact of physics!



I have found one of the best tools in solving my inertia issue is involving friends to help me with the "push" part of the physics problem. Having someone to meet or exercise with forces me to at least be responsible and call them to explain why I am not getting out of the house for our exercise date. And more times than not, I'm too embarrassed to say, "I don't feel like exercising today". I also enjoy the company of my friends, so scheduling walks with them gives me a reason to meet up and spend some quality time.



The "incline" part of the physics problem is a little more tricky to solve. Finding the type and amount of exercise that will help you roll more smoothly downhill can be a hard task, especially when dealing with some of the physical limitations of MS. It is true...some days my fatigue is too overwhelming to "get out there and go" or my spasticity is unrelenting in my lower calves and it might actually be detrimental to my health over all to push myself into a 4 mile walk. My advice to myself has been to start slow and give myself allowances for these days and to also have a back up plan of some type of exercise I CAN do if I wanted to on those days.



Recently my therapist and I did an experiment with the idea of inertia and exercise. We made a pact between us to try a plan for one month/28 days and to agree not to give up before then. Since we are both stubborn and strong-willed people, neither wanted to risk being the one who would have to admit they failed!



The plan we designed was to do some type of aerobic exercise every day for 12 minutes a day...that was all...just 12 minutes of cardio a day (This was based on ideas from the book, "Fit or Fat", by Covert Bailey). I even made up cute little calendars with fitness sayings and stickers to mark each day we had completed. The idea was to retrain our minds about exercise by forming a HABIT, thus retraining our bodies. I am happy to admit, it DID work...at least right up until my recent relapse it did. And we both felt physically better in the process, even adding time to our workouts as well as adding other types of exercise, such as yoga and free weights.



It was interesting, however, once I fell into relapse, I did not even try to maintain any type of exercise...frankly, for a long period, I couldn't. My leg was weak, the pain was overwhelming, and I was needing to rest and let my body heal. And, when I dropped out of the "plan/experiment", my therapist eventually admitted SHE did, too! The motivation aspect for her seemed to dissolve.



Now that I am mostly through relapse and returning back to work, I think it is important to return to my "plan" and get back on track with my training schedule for the 1/2 marathon AND my behavioral training plan with my therapist. Who knows...perhaps it won't take me twice as long to lose the 13 pounds of steroid weight as it did to gain it!



My advice to you (if a fat lady is allowed to give any about exercise!) is to do what you CAN do, but not to use your MS as an excuse to do nothing. There are many exercise options available for you, even if your mobility is limited. Staying flexible and limber can be just as important as giving your heart a cardio workout or losing unwanted weight. Focus your energies on attainable goals such as simply moving or stretching each day and NOT on having the body of Twiggy in a month...you'll only set yourself up to fail and sit like a stone in the road...you'll lose your inertia very quickly. Just MOVE in some way and don't let MS rob you of this primal freedom!

Sunday, April 16, 2006

BrainCheese...It's Not Just A Job, It's An Adventure!...


OK, I think I really AM brain dead tonight! I returned to work today (this time I hope for a permanent stint) after what seemed like a terminal relapse period, and finally came home exhausted, but triumphant.


It was a fairly good day, in spite of myself. I only lost one cell phone, forgot two important phone numbers, and left my briefcase where I couldn't find it once...the good news is, no one died on my watch! Or at least no one I KNOW of did.


I've spoken before in previous blogs about my employment and fears of becoming disabled from Multiple Sclerosis. I fortunately work in an environment of coworkers who are very aware of my MS issues and constantly supportive of me. They were some of the first people I told about my diagnosis. I couldn't imagine NOT telling them and having their support.


But for some, the decision to disclose your diagnosis and symptoms in your work place is not such an easy one to make. It can be a tough balancing act deciding when and whom to tell. I know some MSers who choose not to disclose this information to anyone...that seems to work for them.


Because of the type of work I do and also the fact I am a government employee, I was very careful at first how MUCH to tell my employer. I researched the Americans With Disabilities Act and carefully reviewed the federal Family Medical Leave Act and decided discloser would be in MY best interest. I am also protected by my local union, so I felt I had enough legal safeguards in place to protect me and my rights of fair employment.


I believe it is important to decide for yourself what is in YOUR best interest before disclosing the diagnosis of MS or your disabilities to an employer. It is very important to establish what you would gain from the discloser and what the potential losses may be if your employer is told you have MS.


I work in a healthcare environment, so Multiple Sclerosis is not an unknown entity to my employer. My personal experience and needs in dealing with the disease is, however. When I decided to tell the "Big Boss" I had MS, I came to the meeting prepared to educate her about the disease and also answer any questions she might have about how MS affected me personally. I felt this was important information to share to help dispel any fears she may have about my ability to do my job effectively.


The important thing to remember when deciding to disclose your diagnosis to your employer is THERE ARE LAWS PROTECTING YOUR RIGHTS TO PRIVACY AND YOU ARE NOT OBLIGATED TO TELL THEM ANYTHING. Your employer is also not allowed to ask you anything about your disease...this is a protected right in the Americans With Disabilities Act.


If you DO decide to talk to your employer about your MS, go into the meeting prepared. Think of the gazillion questions you had when you first received the diagnosis and ratchet that down a few notches...these are some of the same fears and questions your employer may have. Offer them confidence in your abilities to continue to perform your job as always, but advise them MS is an unpredictable disease and you may need to seek accommodations in the future. Let them know they will be the FIRST to know if that happens.


If you find yourself needing special accommodations in the future to do your job, such as equipment changes or work hour changes, you do have the right to ask for these. What the ADA (Americans with Disabilities Act) states is the employer must make "reasonable accommodations". The word reasonable can and is interpreted by employers in various ways. Essentially they are required to provide you with tools and access to do your job with your disabilities as long as it doesn't create "undue hardship" on the employer. This means if you ask for a $1,000 chair to sit in to help ease your pain and your employer can't afford it, they don't have to provide it for you. Likewise, if you ask for a change in your schedule or work duties and there is no one available to cover your work or absence, they don't have to provide it. There are many "gray" areas in this interpretation, so it might be helpful to find out what prioraccommodations have been made for anyone else who has a disability if you know who to ask of this question. If they've done it for someone else in your work force, it will be hard for your employer to argue NOT doing it for you.


It is also important to know you have the right to ask for accommodations without disclosing your diagnosis...only your disability can come into question with your employer. When I was asked to file FMLA papers (request for Family Medical Leave Act coverage) last year after an extended absence from work secondary to a relapse, my astute neurologist at the time simply disclosed I had a "neurological disorder which may or may not require periods of an unknown time frame of absence from work with possible IV treatments and oral medications". She stated a few other things in the paper work, which my employer required, but never disclosed my actual diagnosis of MS. Gotta love her for that one!


Whatever you decide to do...to disclose or not to disclose in your work place, there are many websites available to consult prior to making this decision. The National MS Society is a great place to start at
http://www.nationalmssociety.org because they have many brochures and online tips to assist you. The ADA law is available for review at http://www.usdoj.gov/crt/ada/ and information about the federal FMLA can be found at http://www.dol.gov/esa/whd/fmla/ .

As I mentioned at the beginning of this blog, I AM truly brain dead tonight, so I apologize for the lack of "wit" in this writing. I am certain something tomorrow will strike my funny bone and I will be once again compelled to add humor to this site! Until then, I hope you find this information helpful or at the very least a starting point for you in navigating your decisions about your MS in your workplace.

Saturday, April 15, 2006

But You Look So Good...


After reading my friend Suzy’s blog today about her father’s comments on her MS and receiving an email from a new MS buddy in Texas with the same theme, I decided it was time to tackle the “But you look so good” aspect of Multiple Sclerosis. And I thank both Suzy and Suzanne for sparking the idea today because I’m certain what I HAD written earlier (and not posted) about Easter was surely to offend someone somewhere!


If I had a dollar for every time a well-intentioned person has told me, “But you look so good,” in response to learning I have MS, I’d be one rich…person. I had to edit that last sentence at the end because my history of passion about this subject has often led to fits of swearing and inappropriate behaviors.


When I was first diagnosed with MS, the statements about looking “so good” were incredibly offensive to me and I often felt hurt by them. After all, it wasn’t my fault I “looked good” or that I was diagnosed with Multiple Sclerosis. It also wasn’t my fault my disease hid itself so well under my “good looking” exterior. I began to get a guilt complex because I “looked so good” and wondered if I shouldn’t be walking with a cane just for the hell of it or checking out one of those motorized scooters at the store just to flaunt my MS. If I didn’t “look so good” on the outside, perhaps my friends and coworkers would understand just how miserable I felt on the inside.


If you have MS, you already know and live with the fact many of its symptoms are elusive and never show themselves on the “outside” of your body. There is no growth to point to, no discoloration of the skin, and often nothing at all external that would tip someone off and identify you as having MS. Many people with MS “pass” in the general public as healthy, “un” diseased individuals. For this very reason, it’s a good thing MS is not contagious! G. Q. Public should actually be thankful for this.


But looking good and feeling good are two, separate matters, and often times it’s the “feeling good” part people don’t hear well. Let’s face it…we are a society of judging books by their covers, in spite of an age old proverb warning us not to do so. What we see is what we get, or so we often believe. And I believe this is because we see what we WANT to see and nothing more.


After several months of internalized hurt feelings, I began to explore what was really behind other people’s comments of “but you look so good”, and I started examining why I was choosing to feel hurt by this. At first, I simply pointed my finger at ignorance, blaming others for their lack of education and insight into what Multiple Sclerosis was all about. AND…unfortunately I took a big leap on a fast moving bandwagon and started rolling over anyone in my path, deciding it was my “job” to educate them with swift and pin point knowledge of the symptoms and effects of MS. I quickly learned most people simply didn’t care to learn what knowledge I forcefully imparted on them. They recoiled in fear.


After sending some of my friends cowering in corners, I next decided the best approach was to pretend I didn’t care what they said and I was not in the least fazed by their comments. This really didn’t work well either, because the truth of the matter was I DID care. It felt bad. I desperately needed and wanted them to understand what I was going through and how horrible I felt.


Finally, at stage 3 of my transformation of the “But you look so good” response, I was able to turn my gaze inward and examine what it was I feeling and responding to on a deeper level. After all, changing other people’s behaviors is a lot like herding cats…it just can’t be done until the cat decides to go where it wants to and hopefully it will be in the direction YOU want the feline to go!


What began to surface for me in the feeling realm was sadness, fear, and shame. The sadness part was quite obvious…I had been given a life altering, unpredictable, potentially disabling disease diagnosis. My life as I knew it had been changed forever and my own mortality was staring back at me in the mirror. I was saddened over losses now upon me and yet to come. I cried many hours of tears in my struggle to accept this diagnosis and all it entailed. There was a huge iceberg of sadness hidden beneath my external surface that the “But you look so good” crowd was never privy to see. It was no wonder they had no idea how much pain I was in emotionally or physically…I never let them in to see it for fear it would scare them away.


My fear centered on the unknown and what “could” happen to me every morning I woke up. Each morning during my early diagnosis time, I would cautiously open one eye at a time, checking my vision to make certain I hadn’t gone blind in my sleep. I would carefully check the rest of my body for weakness, paralysis, or any other pain that “could” be the result of MS. And if there was a new tic or tremor, I would go circus freak crazy about it in fear, running to the end of my own life in my mind before my body had a chance to catch up with the idea! Over time, however, I didn’t die in my sleep from MS or become instantly disabled without recovery, so my fears lessened. But again, the “But you look so good” crowd never knew how frightened I was…I was too prideful to let them in on this little secret.


My pride led me to explore my feelings of shame. Now this feeling was a bit hard to grasp or understand why it was there. It’s still a difficult subject to formulate words around, but I’ll give it my best shot here. I felt shame that I was “diseased”. I felt shame that I didn’t “look sick” when some of my MS friends were in wheelchairs or walking with walkers. I felt ashamed to look healthy and not the poster child for the MS movement. How WOULD anyone ever know my plight or pain if there were no external manifestations of it? Perhaps they would conclude I was lying? And, when I actually did feel good, perhaps I WAS lying to gain their sympathies? The thought of deceiving others knowingly or unknowingly causes me great shame.


As you might have guessed already, I EXPECTED others to simply “know” what I was going through without ever having to take the risk or responsibility of telling them. I never had to risk rejection and I certainly never had to take responsibility for my own feelings and actions if I expected others to do this for me. I could hide like a chameleon underneath my own skin and just be pissed off at everyone for not guessing what I was thinking or what I was experiencing.


If you’ve read any of my previous blogs, you already know I work in healthcare and in the mental health field specifically. So, I feel I can say as an expert here, HOW I WAS FEELING AND BEHAVING WAS NOT HEALTHY! I certainly was NOT practicing what I preached in my own life and this caused a great deal of consternation to my psyche! I had to choose a new way to think, feel, and behave if I were ever going to get through to the “But you look so good” crowd.


Now mind you, I did come up with several sarcastic responses along the way for the “But you look so good” people. One of my favorites was, “I know, but I’m selling tickets for the freak show tomorrow to raise money for MS awareness. Wanna buy one?” Or (said with a puzzled look), “Hmmm…but YOU don’t. Maybe you should think about getting MS?” Or then there was the simple throw my hands up in the air and mutter under my breath, “Oh, bite me”, response. That one always went over well.


Now what I choose in response to the “But you look so good” comment is quite different and it feels very different for me as well. When someone responds to my MS with, “But you look so good”, I simply say, “Thank you. I do, don’t I? Would you like to know how I feel?” I give them the option of either dropping the subject at that moment or engaging me in further discussion about MY MS and MS in general. And if they really want to know, they will encourage me to continue.


I encourage you to explore your own feelings around this topic and decide for yourself how YOU need to respond when others misunderstand your situation. But more importantly, I offer you courage to take the risk to TELL others how you feel if the relationship is truly important to you and you feel hurt or offended by their responses to your MS. You may find out your response to what they say was never what was intended at all. You may find out their response to you was, in their own way, an attempt to make sense out of your MS, but they simply don’t know how to say what they really feel. Oddly, you may find out the “But you look so good” comment is actually one said stemming from the person’s own fear and sense of helplessness. If that be the case, then perhaps you both have a lot in common already.

Happy whatever it is you might be celebrating this weekend…