MS & Weight: What People Think vs Reality

I post from time to time on a forum for moms. Just about every topic imaginable gets discussed, dissected and debated; this week alone has produced posts on homeschooling, the pressure for young moms to choose adoption, holiday headaches and what to do when you order a lovely necklace online but get a truly awful one instead (you'd have to see this thing, it is abominable...it's something only the child of Mimi Bobek and Mr. T would wear in public.) 

This week also hosted a question I see online with depressing regularity: 

"When you see an overweight person using a store-provided mobility scooter, do you assume the person is using it because of their weight?" 

Not surprisingly, as is often the case, a large number of people admitted they do.

In seems to never even occur to some folks that a medical problem other than obesity is the reason they aren't walking as they shop. And as one of the forum's disabled moms, I felt it important to show them why making that assumption really does make an "ass" of "u" and "me."

This belief does the disabled community a huge disservice. It sends the message that the healthy don't see you as a person with mobility issues due to illness or injury. They see you as a fat, lazy, overeating, no-excuse-to-be-that-weight, 100% at fault, no-willpower-having, McDonald's-addicted loser. 

The problem with that belief is the problem with most assumptions and generalizations: you are making a quick judgement that likely has absolutely no bearing on that one person's situation. It's little different than assuming a young mother is on welfare, or that a guy with a lot of tattoos is a criminal. You're putting everyone who fits that general description in one box, and assuming they are all the same. And life just doesn't work that way. 

Once they put you in that box of "using the scooter just because they are fat," they then proceed to blame the victim. They are lazy. They don't care about themselves. They eat too much and any weight gain is a result of it. Anything else is just an excuse. 

They are unaware that many medications cause weight gain, a fact the medical community knows all too well. Of course, medications aren't the only cause of obesity in the disabled community: lack of exercise is a problem, especially in those with mobility issues or paralysis. And chronic fatigue can lay anyone's workout plans asunder. 

These factors, when combined with other common issues in the chronically ill such as an increased risk of injury, difficulty healing, and frequent illnesses and infections, make weight gain very easy...and weight loss very hard. Adding insult to injury, you also have to deal with people who judge you unfairly and treat you accordingly. 

That's not to say that thin disabled people don't run into dehumanizing, hurtful stereotypes. Studies have shown that when an individual sees a thin person in a mobility scooter/chair, their first impulse is pity. They assume the person is very sick, and very frail...when neither may be the case. They are often seen as helpless, and incapable of caring for themselves. They are thought of as invalids, and sometimes even as burdens to their spouses, families and taxpayers.

But this is not the case when they see an overweight person in that same chair. Now they assume that person's weight is the reason for their mobility issues, and they are judged to be malingerers and slackers. "Disgust" is a common reaction, and they are much more likely than not to victim-blame an overweight patient than they are a person of average size...even when the two patients in question have comparable diets and difficulties with exercise. The thin person's life has spiraled out of control, making them a slave to the disease. The fat one's life is also spiraling out of control, but it's somehow their own fault and simply what they deserve. 

Both cases do a serious disservice to all disabled people. There aren't just the two choices of frail or lazy, pitiful or disgusting. We are so much more than that!  

For me, it's both medications that pack on the pounds, and a disease that makes it difficult at best to get enough exercise to combat them. As the Spoon Theory so wonderfully explains, I just don't have the spoons for a workout most days.

Like many of my chronically-ill brethren, I am overweight because I am disabled...not disabled because I am overweight. 

And just as unsurprisingly, many people just cannot or will not believe that.

I did my best to educate, to share my experiences, but I am not certain it did any good to those few who really have no idea what it's like to be disabled. I can hardly blame them for that! Rarely does anyone understand what it's like to be disabled...unless or until it happens to them. 

I've seen what does happen to the "it's just an excuse" fan once they themselves become disabled. At first, they are determined to prove that they were right all along. They believe they will easily avoid falling into the traps the obese sick are stuck in. I've seen them struggle, get hurt, try again, eat healthy, follow their doctor's instructions...for far too many, they gain weight anyway. 

Next, they try a succession of diets and exercise plans, starting with the reasonable and quickly descending into the certifiable. Chronic fatigue sucks away all their energy, they struggle to adjust to medications and their unavoidable side-effects, and they start to get angry at just how difficult this really is...and even angrier at doctors who can't do anything about it except give you the annoyingly contradictory advice of "get some exercise" and "rest more." 

This stage is followed by depression at the whole situation, ironically treated by meds that put on even more pounds. 

Afterwards, they become defensive, jumping at the chance to let everyone know it's not your fault this is happening...you aren't lazy, you don't overeat, why won't anyone believe that?!? 

How do I know all this? Because that used to be me. I learned the hard way. I made some pretty boneheaded assumptions of my own, prior to getting sick and in those early months of oh-crap-this-is-really-far-harder-than-I-ever-imagined. I knew disabled people: my granny, my stepsister, one of my mom's close friends, a classmate. They were all thin. What was I doing wrong? Only to find out the answer is: nothing. 

I have seen it happen to the newly diagnosed, time and time again, over the past two decades. It's just one more unneeded example of how completely out of your control your body and your life has become. You feel ashamed, defeated, terrified, and above all else, overwhelmed. 

I have found that the vast majority of healthy people I encounter out here in the real world really do care and really do their very best to empathize, to be kind to those unfortunate enough to not have their health anymore. After all, it could happen to any one of us, at any time. Like a twisted version of the Joker's creed, we are just one bad day away from that wheelchair. 

Unless, of course, you're fat. Then it's your fault, and no amount of studies, testimonies or explanations will convince them otherwise. 

That is, until they or someone they love is wheeling a mile in my chair.

So what DO I say in these situations? 

•To the people who don't believe medication causes weight gain:

•To the people who believe the problem is really being lazy and making excuses, I share a story about one of my father's neighbors back in Ohio: 

•To the people who don't understand how heat-reactive illnesses make most exercise out of the question:

•To people who believe it's all about overeating*, and all fat disabled people are only fat because of it, and it's a choice (because naturally we would choose to be overweight, because that is a thing people do): 

•To the people who think that you would be much better off walking instead of using that scooter, as it would be "healthier":

Now you may have spotted a pattern here: people who know one out of the millions of people on certain meds/with certain illnesses, and assume that their experience with that single person is indicative of the experiences with them ALL. 

It's the most common misconception about disability that I run into, both online and in real life. They are often steadfast in their belief that their one acquaintance with multiple sclerosis is a model for how the disease operates. They are often stunned when I ask them which form of the disease their friend has...as they had no idea that there were different kinds of MS!

Even so, they continue to compare your disease with this unseen person's. And not just in regards to weight, but in everything from your work status to your relationships to your parenting. All they need to know is that one person who has MS who doesn't have the exact same issues you do...and they have all the proof they need to show that you must be doing something wrong! 

•And so finally, I come to the ones who still insist that it can't be the MS that's keeping you from losing weight/getting a job/farting rainbows. This opinion, which they believe will all their hearts is not an opinion but a fact, is not based on any study, research or medical knowledge. Instead, it is based solely on that one elusive person they know. This person who has MS and is thin/has a great career/farts rainbows frequently. 

To them I leave these parting words on behalf of all people with MS, everywhere, in the hopes that this will someday be common knowledge and I will never have to point out the obvious again: 

---Angel 

*There's a typo in this entry: my phone turned "overeating" to "overstating." Sorry about that.

What is TN, Anyway?!? An FAQ Post

This past week has been a rough one for me, via trigeminal neuralgia.

I have secondary progressive multiple sclerosis and MS-related trigeminal neuralgia. I've had the former since 1995 and the latter showed up maybe a year later.

I frequently receive questions from people who are unfamiliar with the disease & from those who are being evaluated for it***. Ever wondered what this thing is that i keep harping on about? Well, here are my TN FAQs:

1) WHAT IS THE TRIGEMINAL NERVE?
The trigeminal nerve is in your face, running from your forehead down to your jaw. It is the fifth of twelve cranial nerve pairs. It's an important nerve, as it provides and controls sensation to the face.

2) HOW DO YOU GET TN?
Trigeminal neuralgia mainly occurs when:

•there is an injury to the nerve (such as a car accident or sudden blow)
•there is a knot in the nerve...and no, I have absolutely no idea how one goes about getting a knot in one's trigeminal nerve, or...
•It can happen as a symptom of a neurological disorder, like MS. Statistics vary, but TN occurs in no more than 10% of patients with multiple sclerosis.

In addition, some studies show that certain facial piercings, primarily the tongue and the eyebrow, might cause TN. And while dental work is often cited as the number one trigger of trigeminal neuralgia flare-ups, it does not appear to be a cause of the disease.

TN is not contagious, but it does appear to run in some families.

3) WHAT ARE THE SYMPTOMS OF TN?
Some patients say the pain feels like being hit by lightening in the face, over and over again. Others compare the pain to a live wire spewing electric shocks. The pain is, naturally, mostly in the face. It can radiate to the jaw, palate, neck, head and ears. It has been known to either cause or trigger headaches, including migraines.

While experiencing an attack, the sufferer can find it extremely difficult to talk, eat or drink without severe pain. Those activities are also known triggers of TN.

Attacks can last as few as a few seconds to as long as several days. Most patients have TN in only one side (for me, the right side), but some do experience it on both sides of the face.

4) HOW BAD IS THE PAIN?
TN packs a helluva punch, and calling the pain considerable is an understatement. It's generally considered the worst chronic pain disease known to man.

Having had an attack of it during labor (and kidney stones at the same time), I can say with some authority that the TN pain is much worse than giving birth. Not to mention that at the end of labor, you have a beautiful baby to love. At the end of an attack, all you have is some relief...and for how long, no one can tell. It is as relentless as it is unpredictable.

The strain of fighting TN can be overwhelming. In fact, TN is nicknamed "The Suicide Disease," owing to the large numbers of sufferers who attempt to end the pain by ending their lives.*

5) HOW IS IT TREATED?
There are a number of options, depending on the cause of your TN, the frequency of attacks and the average level of pain.

Number one is to eliminate as much as is possible any triggers. Crunchy food, makeup such as blush, wind on the face, etc. There's no way to eliminate ALL triggers (how do you completely avoid sneezing?), but learning to avoid or lessen the impact of triggers is the Prime Directive of TN (bad Star Trek reference notwithstanding).

There are surgical options, such as having the nerve cut or "killing" it by shooting alcohol into the nerve. Those are not an option for everyone, and not without risks. Sadly, some who have chosen surgery find that the pain returns...and in cases, it returns stronger than before.

If you are not a candidate for surgery (or simply choose not to go that route), there are medications that can be used to treat TN, including anticonvulsants and muscle relaxers, as well as narcotic and non-narcotic pain relievers. Some patients have had some success with homeopathic treatments such as acupuncture or biofeedback.

6) I THINK I MIGHT HAVE TN. WHAT SHOULD I DO?
Keep in mind that you are not alone. If you are feeling depressed or despondent, those feelings must be addressed with your doctor ASAP. It is no weakness to ask for help*. If anyone has the right, it's someone who is constantly in fear of being repeatedly struck by lightening in the face!

Next, I strongly encourage you to begin a pain journal. Note the date, time and severity of the pain on either the 1-5 or 1-10 pain scales (I use the 1-10, because it offers more flexibility and greater accuracy.) Also note any possible triggers (eating, sneezing, blowing your nose, etc), what you have done to combat the pain. It is vital that you note when the symptoms stop; the length of attacks can vary widely.

Journaling not only helps you to discover triggers (wow, I really do have an attack when I eat cauliflower), but allows your physician to see exactly what you are going through. This will help your doctor to make (or rule out) a diagnosis of TN. The journal helps in another way as well. Sad to say, some doctors tend to take patients with records more seriously, if only out of fear of litigation.

You can either keep a handwritten journal, or use one of the many apps on the market. I've tried quite a few, and personally recommend Pain Monitor Lite. This app not only allows me to document the attacks and my medication usage, it creates charts showing my pain levels on a daily, weekly, monthly and 90-day scale. You can even email the charts to your physician from the app.

If you choose a handwritten journal or an app, here's an important hint from Angel: make it one you like using. Buy an attractive journal, or an app you find easy to use. You're more likely to use it and use it often if you like it. A little thing, but it does make a difference.

Another tip: when having a bad attack, either have someone take a photo of you or take a quick selfie (but please, for both pain and aesthetic reasons, eschew the duck face.) You might balk at that one; after all, you feel like excrement and it shows. But remember: your doctor rarely, if ever, sees you at your worst...and a picture really is worth a thousand words.

7) I HAVE BEEN DIAGNOSED WITH TN. NOW WHAT DO I DO?
Getting diagnosed with a chronic disease forces people through the same stages one generally associates with the death of a loved one. This is a normal process, but because of the high suicide rate among TN patients, you must be particularly vigilant about any lingering or overwhelming depression. Learn the symptoms of depression, and ask those close to you to please speak up if they suspect you need help.* Be honest with your physician about your emotional state, and do not delay getting help if you begin to have suicidal thoughts or feelings*.

Talk over your various options for treatment with your physician and keep your mind open. Don't be afraid to seek a second opinion. And let the doctor know if the side-effects of your treatments are affecting your quality of life. You may have to try many different things before you find a regimen that will work for you. Try to be patient, and above all, don't give up.

I cannot overstate the importance of talking with people who understand what you are going through. To that end, one of the first things you should consider after getting your diagnosis is a support group. You can go to one mediated by a therapist, or you can join an online support community dedicated either to TN specifically or chronic pain in general. The online groups are helpful to TN patients because you don't have to speak during an attack! That makes a big difference when you need support but every spoken word feels like an assault.

Groups/communities can be found on Myspace, Facebook, Cafemom and other social media sites. You can also contact The Facial Pain Association: www.fpa-support.org.

8) HOW CAN I MAKE MY FAMILY & FRIENDS UNDERSTAND?
Well-intentioned family & friends can have a hard time understanding what TN is like, and how chronic pain works. These misunderstandings can lead to hurt feelings, frustration and even increasing isolation, so learning how to communicate how you feel can be vital.

Some of the people in your life will feel sympathetic to what you're going through, while others feel pity and/or disgust. Some cannot wrap their minds around the idea that TN pain is worse than childbirth, worse than migraines, worse than a root canal, worse than gall or kidney stones (I've been through all of the above, and let me assure you: TN is absolutely worse). They don't understand why you can't just distract yourself or "not think about it." Some really want to understand how pain affects you, but are overwhelmed by this strange disease they've never heard of before.

Unfortunately, many react by trying to find some way to blame the patient. Their diet is all wrong. They weigh too much, or not enough. They should take up jogging/meditation/hypnosis/and on and on. I've even had people recommend bee sting therapy...which would be impossible for me even if it hasn't been thoroughly proven to be medically useless, as I am allergic to bee stings.

Some of the comments I've heard:

•But you look fine! I can't hurt THAT much.
•Pain is just mind over matter.
•If you got a new hobby/got a job/got out of the house, you'd feel better.
•If you went vegan/got rid of carbs/exercised more/did yoga, you'd feel a lot better.
•You don't need medication. You need a vacation.
•How can you be so tired? You didn't do anything but rest this afternoon!
•I've had (fill in random health issue), and I got through it without needing a support group!
•You're making yourself sicker by (fill in anything I do in the realm of my marriage, my parenting or my hobbies).
•You don't get out enough. You'd feel better if you were having a good time!
•My friend/relative/coworker has (fill in health problem) and he only takes homeopathic treatments, and he can run marathons and poop rainbows!

You'll hear those a lot. A LOT (well, maybe not the rainbow poop one.) Point being: be prepared for a ton of (mostly) well-meaning but ignorant and insensitive remarks from everyone from your parents to your next-door neighbor to the cashier at the coffee shop. A mere mention of your illness will leave you awash in a tidal wave of cockamamie advice in less time than it takes for Rush Limbaugh to eat a bucket of chicken.

Chronic pain is a lot like parenting a toddler: everyone's an expert, so long as they have no experience. And the less experience they have, the more advice they feel compelled to give.

It's this attitude, this "it can't be that bad, you're just lazy and complaining" belief system that leads the vast majority of chronic pain patients to simply suffer in silence, rather than be scoffed at, lectured to or simply not believed. More and more, they stay at home, away from the judgmental and prying eyes. This can lead to, or worsen, depression.

And so I say: forget suffering in silence. Bring on the spoons!

9) WHAT DO YOU MEAN, 'BRING ON THE SPOONS'?!? I JUST WANT MY LOVED ONES TO UNDERSTAND WHAT I'M GOING THROUGH AND YOU'RE TALKING ABOUT SILVERWARE!
I know how hard it can be, trying to convey to those around you how you feel: what the pain is like, and how it affects your life.

That's where the spoons come in.

"The Spoon Theory" is a story written by Christine Miserandino**, and can be read (and downloaded) at www.butyoudontlooksick.com. Taken from an attempt by Ms. Miserandino to explain to a friend how her chronic illness affects her day-to-day life, "TSP" is a brilliant article and fantastic idea. By demonstrating her struggle via spoons at a diner, she opens the eyes of not only her friend but thousands of people.

I struggled for years to explain my fatigue, pain and other various and sundry symptoms with little success until a friend pointed me to "TST." I recommend it highly and have had many people in my life read it. My husband is also a big fan: he says he never really "got it" until he read "The Spoon Theory."

So please, take a moment to read "The Spoon Theory." Pass it on to those you love. And check out the rest of butyoudontlooksick.com. It's a great site for individuals with "invisible diseases" like remitting/relapsing multiple sclerosis, fibromyalgia and Lyme disease, etc.


So that just about sums it up...

...but wait! There's more! A disclaimer! And footnotes! Hooray!

Enjoy, and have a great weekend, everyone!



*If you are feeling overwhelmed, depressed or suicidal, please get help ASAP. Do not wait. Contact your physician. You can also contact the good people at the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or www.suicidepreventionlifeline.org. They can help you find a therapist or crisis center in your area.

**There is also a Tumblr about the "Spoon Theory" at thespoontheory.tumblr.com. There is a YouTube video by the author explaining "TST" as well as a Facebook page just waiting for you to like it. Go on now. Don't keep it waiting!

***If your question isn't covered in this post, please feel free to leave a comment or email me at Pendragon525@yahoo.com. Be sure to put "Zen Pretzel Trick" in the subject line so I don't mistake your inquiry for spam.


DISCLAIMER: I am not a medical expert. I am a blogger. I write about my own experiences and about my understanding of the diseases I suffer from. Never confuse or substitute any blog or blogger with pertinent medical advice or use instead of a medical opinion from a licensed physician.

My Experiment With MS and Double-AC

As most MS veterans know all too well, summer is the hardest time of the year. The reason is simple enough: MS is heat-reactive*. Even a change of just a few degrees can make a huge difference.

I put that supposition to the test this summer with a different way to beat the heat with a method I'm calling "concentrated air conditioning" or "double-AC." This is when you cool the whole house via central air, but have a secondary unit in one or more rooms to keep those rooms several degrees cooler than the rest of the house.

My husband was the main proponent behind this summer's experiment. I was more than happy to oblige, as I often feel guilty that everyone else in our home has to shiver in order for me to keep my symptoms at a minimum, especially at night. It's always bothered me that my kids had to sleep under heavy blankets in July. Well, with concentrated air conditioning we were able to keep the rest of the house at a reasonable temperature (65-68 degrees) while my bedroom, where the secondary unit is located, could keep me comfortable at a brisk 58-60 degrees.

Now, that doesn't sound like a difference of very many degrees, but it has made a huge difference in my summer experience. I've used less Baclofen, less pain medication (both narcotic and non-narcotic) and suffered less insomnia and less of the crushing summer fatigue that is a hallmark of MS. Nausea was so appreciably lessened, I stopped taking Phenergan for the first time in several summers. I have not suffered a single serious fall or injury, and for the first summer in recent memory, I was not completely reliant on my wheelchair for outdoors excursions. For me, that is a very big win: I got to leave the house with a cane...in the summertime! Even my doctor noticed and was pleased.

Now, that isn't to say that this method hasn't helped all symptoms or had its downsides. It naturally did not remove or relieve all heat-reactive symptoms: summer fatigue is still an issue, more frequent muscle spasms and nerve shocks were woefully common. Bladder issues remained unaffected. Optical problems like eye twitches, blurry and double vision were just as problematic as they had been last year. The experiment had no appreciable effect on vertigo, muscle weakness and "nerve burn." Tremors, which are a relatively new symptom for me, became worse and were quite noticeable. And frankly, nothing gets rid of the pain, especially trigeminal neuralgia pain, entirely. Some of that pain came as a result of discovering that placement of the secondary AC unit means everything (location, location, location). Do not position the unit in such a way that it blows air directly on your face. Even something that innocuous can cause a full-blown TN attack. Lesson learned.

The biggest disappointment of the last few months? Being too sick to attend my goddaughter's birthday party for the first time. I was able to see her later in the evening, when it had cooled down somewhat, but I still felt terrible about it.

Additionally, it had the unfortunate side-effect of making me a virtual prisoner in my bedroom, as the difference in symptoms and severity was striking when spending even short amounts of time in other rooms of the house. For example: last night, we has a nice family meal. My husband grilled, while my daughter and I made pasta. By the time the pasta was done, the combination of lower AC temperature and the heat generated from cooking had caused me to feel nauseous, light-headed, dizzy, shaky and my blanca was very precarious. I ended up eating dinner in my bedroom. For the rest of the evening, I had a very noticeable increase in muscle spasms, nerve shocks and the trademark MS symptom "pins and needles" (think about how it feels for your foot to fall asleep, now transfer it to any part of your body and multiply it by a factor of one hundred). It is now past noon on the day after, and I am struggling with nausea, nerve shocks, fatigue, vertigo, muscle pain and a vicious attack of the trigeminal neuralgia (which may or may not be related to last night's culinary adventure).

Naturally, when I began this experiment, I searched for the silver lining of being confined mostly to one room. My closet is in desperate need of re-organization, I am pathetically behind in personal correspondence, and, above all, it would give me some much-needed time to do research and work on my book.

These were all suppositions I made going into this experiment. What I did not anticipate was that keeping cool would not affect the pain-in-the-rump symptom of MS I call MS Fog. That's a blanket statement for all of the meddlesome cognitive issues that MS saddles you with and that naturally get far worse in the summertime. You read a book, only to discover you've been reading the same page over and over again for an hour. Your short-term memory and concentration ability is just shot. Add the Fog to the crushing summer fatigue, and just making plans is exhausting to near-incapacitating levels.

Of all the things I had hoped to accomplish during this experiment, only research actually got done. And to be honest, not as much as I had hoped.

So now that summer is blissfully almost over, and I am enthralled in the Battle Fatigue state (the inevitable end-of-summer condition where the symptoms feel worse than they actually are because you are so very worn out from fighting them for months), what have I learned from this experiment?

First and foremost, I believe it has been a success. The aim was for me to feel better than I did last summer, and without a doubt, I do. This summer has been so much easier, in so many ways, than I had any right to expect. I am pleased that I needed less medication and less medical interventions than I am accustomed to this time of year. I slept better, ate better and felt better. I really enjoyed my birthday (July 31st) for the first time in years.

I've learned a great deal about my MS from this experience. I've discovered that just because it is nice and chilly indoors doesn't mean that higher outdoor temperatures won't cause my MS to react. My husband and father-in-law suspect that this may have something to do with ionization. They are debating a possible future experiment with deionization. It is uncanny how I can always tell when it is hot outside, even if it's chilly enough to make ice cubes in my room. I know from speaking to many others with MS that this is a common experience.

I've also learned that I need to develop some new, Fog-resistant hobbies. I cannot rely on reading (including the Internet), and even moderate chores or projects will most likely be beyond me when temperatures soar. I'm not sure what these hobbies will be, but I look forward to discovering some new and wonderful time-waster.

I have also kept up with my experiment of summers past: if it's over 100 degrees (or likely to be), I check into a hotel and avail myself of the indoor pool and jacuzzi. Not only does it continue to prevent me from getting sicker, but for several days afterwards my legs feel stronger and I have less weakness and spasms. This is now my seventh summer of this practice, and the results continue to be consistent and positive. To say that I am happy about this is an understatement...and the kids enjoy the little adventure.

All in all, I think I will continue with the double-AC experiment next summer. Not only because it has helped me greatly this year, but because I am aware that any experiment (even an experiment of one participant) to be considered successful, it must be capable of being replicated. And the more time I put into it, the more I can improve the method and get the best possible results.

Would I recommend double-MC to other MS Warriors? Well, like everything with MS, just because it works for one person doesn't mean it will be the least bit helpful for another. And there is a noticeable increase in energy bills related to this method that had to be taken into consideration. We purchased a new, energy-efficient model, but it was far from inexpensive to buy or to operate. I also think if you are the sort of person who is susceptible to cabin fever or would consider spending the better part of three months or more in one room to be torture...this is probably not for you.

But even in the midst of the dreaded MS Battle Fatigue, I am confident in and grateful for my husband's diligence (and scientific curiosity) that fueled this experiment and gave me the best summer I have had in more than a decade. I love you, sweetheart!

Stay tuned next summer for Year Two...


*The majority of MS patients have heat-reactive issues. However, some do not. Some even have the opposite, and find that cold exacerbates the disease. And a small minority have both heat and cold reactive multiple sclerosis. As usual, MS is very individual and I speak more to my own experience with the disease rather than MS in general. Please keep this in mind when reading any first-hand account of the illness. In other words: your mileage may vary.

Insomnia, Begone!

Well, it's summer again...time for nerve burn, nerve shocks, tremors, muscle spasms and insomnia. I call it Summer Sleepless Nights.

I think what irritates me most about SSN is that it's not in any way functional insomnia. You will get nothing done with your extra hours of consciousness, because between the pain and the bone-crushing fatigue...you are too damn sore and tired to accomplish anything. Even reading a book can be taxing.

I know that summer will be over soon, and the near-constant rains that define Portland as Puddletown will soon be upon us.

Until then..I am hanging in there.

In Pain? Too Bad! Part One

I've had some problems lately at my clinic. This, as you will read, may be the understatement of the century.

Now faithful readers of ZPT will note that I've had problems there before, particularly where prescription refills are concerned. Lately, however, that issue had seemed a thing of the past: the Rx Dick was taken off of refill duty and the new procedure (calling the receptionist and making the request through her) has thus far worked pretty well. I personally had preferred Dr. Fetus' method of simply seeing me every 3 months and writing out 3 months' worth of prescriptions at that time, but I understood why Dr. Forthright (Dr. Fetus' replacement) wasn't comfortable with that and honored her wishes.

And then Dr. Forthright finished her fellowship and moved on.

When I got the letter announcing her departure, I was disappointed. I had, over the years, built up a great doctor/patient relationship with Dr. Fetus, and considered myself fortunate to have found a like-minded physician in Dr. Forthright. For me, it's essential that I trust my doctor, and my doctor trusts me...that we can both speak freely and air concerns without fear of censure. I am not one of those people who likes a doctor who "pussy-foots around," as we say in the South: I want to be told directly, honestly and then get on with it. Having had success with three doctors in a row (The Well-Accessoried Doctor, Dr. Fetus & Dr. Forthright), I had high hopes that the new physician would be in the same vein.

Little did I know the awful sequence of events that would be unleashed as a result of Dr. Forthright's departure.

Below is a letter I've written to Patient Relations and the clinic, and it explains it all:


PLEASE PLACE THIS LETTER IN MY MEDICAL FILE. THANK YOU.

To whom it may concern:

I have been a patient at the clinic for a number of years. During this time, I have had numerous difficulties in obtaining prescription refills (both for narcotic and non-narcotic medicines). I entered into a pain management contract, but the problems did persist. Most of these ongoing issues, however, were resolved some months ago when the clinic re-vamped its prescription refill process. I had been happy overall with the new clinic procedures, but unfortunately these procedures failed me in the months of February and March 2011.

I have secondary-progressive multiple sclerosis and MS-related trigeminal neuralgia. It took some time before a suitable medicine regimen was found to adequetly treat my severe chronic pain. Before that regimen was found, I was frequently forced to go to the ER for pain in addition to numerous office visits. Eventually, the combination of medications that I am currently taking was prescribed. That was four years ago, and in that time I have not once been to the ER for TN pain, nor have I exceeded my monthly medication allowance. I have been randomly drug screened during this time and never failed. I have upheld my pain management contract to the best of my ability. I even sent my former doctor, Dr. Fetus, a thank-you card every January in appreciation for the regimen that has made my life bearable again.

A few months ago, my doctor finished her fellowship and I was switched to an NP. I requested, both by telephone and in person at the office, to be switched to an MD and assumed that had been done. When I called to get my prescriptions refilled in February, I was told I could not have them until I was seen and that I could not be seen until the 10th. I was also told I was still on the NPs rotation, but that I could fill out a form to request a change (this was the first time I had been told about this form).

As a result, I went several days without my medication. The medication takes some time to build a "level" in your bloodstream; because I didn't have my medication on time, the entire month I dealth with much more pain than I am accustomed to dealing with. I am permitted to take my oxycodone every 6 hours and at times I unfortunately had to do so. This has led to side-effects that are most unpleasant, and to my running out of medication prior to March 10th.

While at the clinic on 2/10, I was randomly drug-screened, which I passed. I then asked again to be switched to an MD. I filled out the form, and the NP made a note in my chart as well. I was given my prescriptions, and at no time did anyone inform me that I would need to make an appointment for March or I would once again be denied medication. Had I known this, I would have made said appointment while I was in the office and the following situation would not have occured.

On March 1st, I contacted the office to request my 3 hard-copy prescriptions as I do on or around the first of every month. I was told for the second month in a row that I could not have my medications unless I came in to be seen. I assumed the note had been left in the computer from the month before, and told the receptionist I had just been seen 2 1/2 weeks prior to the call. I was told it did not matter, I had to be seen again. I explained the situation I was in, with higher levels of pain because of the delay the month before and that further delay this month would only lead to more pain and even possibly hospitalization. I was told I could be seen on the 8th, but that was all they could do. I was then asked if I wanted to discuss the matter with the office manager, and I agreed.

I spoke at length with Office Manager "Norene," who was both cordial and helpful. She agreed that my current situation with the medication was due to the clinic's mistakes, and assured me they wanted to do everything possible to "keep me out of pain." She told me more than once, "We certaintly don't want you to be in pain." She suggested I come into the office to "brainstorm ideas" to "help me get over the hump" until I could be seen on the 8th. I argued that the only thing that could be done was to give me medication or a shot, and I did not want a shot. She insisted again that I should be seen. I told Norene I felt I could make it another day or two, and then revisit the matter at that time. She pointed out that another day or two would be the weekend, and my contract disallowed medication requests on the weekend. I would be better off, she said, if I came in to see the NP at 7PM that evening. I was still hesitant, but after considering it for a few minutes, I agreed and the appointment was set.

After my conversation with Norene, I was under the impression that my appointment was set for the sole purpose of finding a way to help me manage my pain until my appointment with my new MD on the 8th. However, when I arrived at the appointment, I discovered that the NP did not believe this to be the case.

When I arrived, the first thing I noticed was the cup for a urine sample. I was taken aback; I just took a random drug screening the month before and as I said above, I have never failed a urine screening. I felt insulted, so I asked the nurse to allow me to speak with the NP before taking it. I wanted to know why I was being asked to take the test.

When the NP entered the room, she immediately told me that she "didn't know why I'd come in." I was surprised, and told her about the medication mishap of the past two months. She was aware of this, and told me there was nothing she "could or would do" about it, and couldn't fathom why I had made the appointment. I told her I had not wanted to come in that evening, but had been persuaded to do so by Norene and repeated to the NP Norene's assurances that we could "brainstorm" a way to "help me over the hump." The NP told me that she had no such intention, and that she was under the impression that I had "insisted upon coming in" for the appointment. I asked if Norene was still in the office so we could resolve this obvious miscommunication, but was told she had already gone home.

At this time I was told I had violated my pain management contract by using all my medication before the date of refill. When I tried to explain what had happened and why I was put in the position of needing more medication than is my usual wont, I was told it didn't matter: I was wrong, I was in violation, and there was no way I was getting any medication or help from her. She asked me what I had "expected" out of this appointment. I became upset and told her that I had obviously been misinformed, as I was talked into coming in to see her under the impression that she would at least have some ideas on how to help me. I pointed out that I was in this position not of my own accord, but because of mistakes and miscommunications by the clinic. I invited her to check my records to see that I had not violated my contract in the many years I'd been there, nor had I been to the ER for TN pain in four years. I had recently been seen and both took and passed a urine test, and had not been in to the office for a shot in nearly a year. There was no evidence that I was drug-seeking, so why was I being treated as if I were?

The NP's attitude became more and more combative. She inquired as to how issues of the pain being out of control had been handled in the past. I told her that years ago, I would go to the ER, but had not done so in four years. I had, however, come into the clinic for a shot twice during that period. She asked what I meant by the word "shot," and did I mean the drug Toradol? I told her that such NSAIDs had stopped working for me years ago and generally were ineffective against trigeminal neuralgia in any case. The shots I had received in the office in the past were either demerol or morphine. She then told me "they don't carry those anymore" and had not done so for months. I pointed out that such shots were covered under my contract, and why had no one told me that part of my "safety net" was now gone? I then asked what I was to do if the pain got out of control, did I have any options other than the ER? The NP then told me I could not go to the ER, either! I was amazed. I informed her that I had an ER addendum to my pain contract and it was my understanding that I was absolutely allowed to go the ER if needed. I was then told I could go, but they (the ER) would have to call the office and they'd be told not to treat me!

I was repeatedly told that this was all my fault, that I had run out of pills and violated my contract, and that I had put MYSELF in the situation I was in now. I asked her to explain, and she said, "If you have to take pills every 6 hours one day, then you have to know you can only take one or two the next day, or none." I asked her if she had any idea what chronic pain was like; it simply does not work like that. She said it had to work like that, if I intended to follow my pain contract. I asked her if I was permitted, as the label says, to take the pills every 6 hours if needed. She agreed that I could, but that if I did so I would run out of pills and "face the consequences of violating the pain contract."

I then remarked that I should probably leave, as she had made her intentions to not treat me quite clear and was making me uncomfortable. She then told me I could not leave without taking the urine test. I asked her why it was necessary and she said, "Because I said so." I asked again, and was told, "Because I said so, because I want you to." I rephrased, asking for the medical reason behind the test. She repeated again, "Because I want you to," and then let me know that I had every right to refuse, but if I did, not only would I not get medicine that day, I wouldn't get it on the 8th, either! I felt threatened and coerced, and I told her so. She again told me I was in violation of my contract and this situation was my fault entirely, and the need for this test was also my fault entirely.

I told her I would take the test and pass it as I always do, but that I felt coerced and insulted. It was beyond my understanding why I was being treated in this matter, and being required to take a drug screening while at the same time having treatment for my pain withheld. I told her that I often wished medical personnel could spend a week in my shoes, that they'd be better for it. She asked what I meant, and I told her I felt I was being treated unfairly, as if I were a criminal or a junkie. She insisted she was not doing so, and I told her she did not know how it feels and to not diminish my pain. But the fact is, everyone "ends up on my side of the bed sooner or later," and how would she feel if when that time comes, she is not believed or told to take a urine test first while she agonized in pain? She told me again that I could refuse the test, but the clinic would then refuse to give me any medications; the choice was mine. She told me she couldn't understand why I was "choosing to be offended" by the test, when they were permitted to drug test me randomly by the pain contract. I told her that coming so soon after the last test, and only because I came in looking for help and being told none was forthcoming, it felt both insulting and accusatory. I told her I was amazed that mistakes on the part of the clinic had put me in such a position, and that same clinic was refusing to help me and blaming me for it, not to mention threatening me with further refusal of treatment.

I related an incident that had occured in March 2010: I had an appointment set up and could not get my refills without it; unfortunately, my father died unexpectedly (I have the death certificate, if necessary). I called the clinic begging for an earlier appointment or for them to simply write the prescriptions this time and allow me to be seen when I returned. I was refused, told nothing could be done. I had to wait until 3:45 the next afternoon to have my appointment, then have my prescriptions refilled before I could begin the 3-day trip to arrange my father's funeral. I had believed this was the worst treatment I had ever gotten at the clinic, but at least in that incident I had been apologized to and not told that I myself was to blame!

I could see that attempting to continue talking with the NP was useless; she had no interest in "brainstorming ideas" to help me, and certaintly was not at all concerned that I was and would continue to be in pain. I told her I was taking the test, and was told to give the sample to the nurse and await the results.

In tears, I went down to the bathroom and took the test. I also took a moment to compose myself. I felt let down and insulted by my medical providers, abandoned and humiliated through no cause of my own, and then blamed entirely for it. I had days of suffering to look forward to, and every means my pain contract gave me as a safety net had been taken away from me. I resented the fact that I was being held to every word of the contract, while the clinic felt no need to uphold their end. And charging me for the pleasure!

On the way back to the room, I met the nurse at the computer station and she took the sample from me. I then returned to the room and contacted my husband to come and pick me up. I was crying, and he did become understandably upset. I waited for 20 minutes before my husband arrived, and then waited 10-15 more minutes before the nurse poked her head in the room and asked why I was still there. Again, I was taken aback. I told her I was under the impression I was supposed to wait for the results. She told me my test was "fine" and I could leave now, as the clinic was closing.

It is hard to describe how I felt at this time. I am not ashamed to admit I cried, which only made my pain worse. In all the years I have gone to this clinic, I have never been treated in such a way, nor do I believe I have done anything to deserve being treated that way.

On the following morning, I again spoke with Norene. I was then told that the NP had considered me "aggressive" and that I had talked about death! I was shocked. I explained my comment earlier, and it seemed that perhaps Norene had been told something different, I am not certain. I was also told that my husband was "acting aggressive." I said yes, he was upset at how I had been treated, but the security gaurd was in the corridor when my husband was there and never once approached us, so I find the charge of being aggressive a diversion from the actual issues at hand.

I asked Norene if what I had been told about the ER was true, and she did not know. She told me that I could feel free to call the doctor on call if needed during the weekend. When I asked if there was a note or order prohibiting my treatment at a hospital, she did not have that information. I let her know I had no intention of visiting the ER (and in fact did not go), but I was distressed at having the measures that constituted my safety net taken from me without due notice or cause. I felt I was being told by the clinic that I simply had to suffer with no recourse. Again, she was cordial and attempting to be helpful, but nothing was accomplished.

I then contacted "April" at Patient Relations and told her all that had occured. I was encouraged to document my experience in a letter, which I could mail or email. She assured me she would also contact Norene and try to discern how and why this situation had arisen. I assured her that I had found Norene to be helpful as much as was possible and was grateful for her efforts.

I spent a very unpleasant weekend, simply suffering, as I apparently had no other option. I find this unacceptable, and I am concerned that I am not being given due consideration in my long-standing pain contract with the clinic. I am apparently expected to uphold my part, and threatened with "consequences" if I do not, but apparently cannot count on the clinic to uphold theirs.

I am extraordinarily disillusioned and offended by my treatment. The clinic is keen for me to renew my contract with my new MD, but I cannot help but wonder if I can hope to expect an honest meeting of the minds, or any form of due consideration.

It is my fervent hope that all of this unpleasantness is the result of miscomunnications and minor mistakes that can be easily rectified. I do not wish to believe that the clinic is in the habit of using pain contracts to decieve and coerce pain patients who are, after all, at the mercy of their treating physicians. It is also my fervant hope that my meeting with my new MD on March 8th will be productive and pleasant, and that I will receive both my medications and a reasonable pain management contract at that time.

Thank you for taking the time to read this, and for your efforts on my behalf. I look forward to resolving this issue in a positive manner in the very near future.


Sincerely,

Angel
March 7th, 2011


I did not receive a response to my letter until the second week of June (the letter is dated June 3). Here is the response to my five-page letter detailing my experiences and concerns:


Dear Angel:

Thank you for contacting the Patient Relations Office expressing your concern regarding the clinic. I am sorry for the experiences that were upsetting to you. The appropriate people have been notified and action taken where appropriate.

If you would like further assistance with this, please contact Norene at the clinic.


Sincerely,

Molly


Yes, I got a response three months later....all of four sentences long.

Think things couldn't get worse? So did I.

I was wrong.

Stay tuned for Part Two....

Stranger Things Have Happened

Longtime readers of ZPT are well aware of my problems with my clinic, particularly with the Rx Dick and the procedures involved with getting three of my prescriptions. For those readers, go ahead and skip to the red font. But if you're new here, here's some background:



Three of my prescriptions cannot be refilled like the others. All my other meds, I simply call or take in the bottle and get my prescription filled, or the pharmasist faxes my doctor's office and gets the refills authorized that way. But these three (Oxycodone, Methadone and Diazapam) don't work that way; the law requires a brand-new hard copy of the script every single month.



Getting this done has proven to be difficult. The office policy was for me to call 5-7 working days (not on weekends, this is prohibited on my pain management contract) and leave a message for the Rx Dick. The Rx Dick (in theory, mind you) would write up a note to the doctor requesting the meds. When that is sent to the doctor, the meds are now "pending." After the doctor approves them, the Rx Dick calls your home (again, in theory) to let you know that the scripts are waiting for you at the front desk. You then go to the office, get an envelope with your name on it, check the scripts to make sure they are correct, show your ID and sign for the scripts. Finally, you take it to the pharmacy to be filled.



Sound simple?



It's not.



I get my scripts on the first of the month. Rather, I'm supposed to get them, but this system has more holes than a collander. The majority of the time, when I call to leave the message for the Rx Dick, the voice mail is full. The receptionists refuse to take messages for him, and if you try to speak to your doctor's PA or nurse, they refer you back to the Rx Dick.



One of the reasons the voice mail gets clogged for days is that on top of being the prescription coordinator, he's also the clinic radiologist. If that sounds bizarre to you, you're not the only one.



When you do finally get the message sent, you are told it will take at least two days. This rarely happens. Whatever you do, though, you don't want to call and check up on the status until day three, because you will get chastised by anyone and everyone you speak to on the subject.



Finally, the Rx Dick rarely if ever calls you to tell you your scripts are waiting to be picked up, leaving you to call every morning and afternoon for days, even a week or more. The receptionists are often annoyed by these calls and by being forced to look on the computer to see if you're still "pending" or if they are at the desk waiting for you. You can leave a message on the Rx Dick's voice mail, but even if it isn't full he's very unlikely to call back.



When there is a holdup, the Rx Dick will not contact you to let you know what's going on. The receptionists will not be told, so they have no information to give you. Your doctor and their PAs and nurses have nothing to do with the presciption refills process, so there's no point in enlisting their help (they will just refer you back to the Rx Dick anyway).



I go through this every month. At least, I used to.



A few months ago, the office changed their policy. There is no more Rx Dick (he's still there, as radiologist). Now, you must call the receptionist 3-5 working days ahead and have THEM send the "note" to the doctors. And then again, you call and you call, hoping that your meds are ready for you before you run out (and run out I have, more than once).



Now when I call, I have to explain to the receptionist why their immediate response of, "Just have your pharmacy fax the request to the office" won't work. The law requires my having a hard copy every time. This annoys many of them. All you can do is cross your fingers and hope they send up a "note" in a speedy manner with the right meds requested.



Yesterday, I made the dreaded phone call. I had tried the day before, only to have the annoyed receptionist snap at me and tell me that it "isn't three days prior yet." Gee, I'd been told 3-5 days, but whatever. I made the call yesterday, and prepared to go over the whole rigamorale all over again.



The phone call went like this:



RECEPTIONIST: Hello?

ME: Hi, my name is Angel, and I need to make a request for three hard copy prescription refills.(bracing myself to have to explain)

RECEPTIONIST: Oh, yes, I see in your chart! By the way, my name is "Norene", and I'm the new office manager. Would you mind staying on the line while I write and send the note?

ME: (surprised) Yes, of course.

NORENE: (over the sound of the computer typing) Request for these three prescriptions, request that attending sign if prescribing doctor is unable, send. There! All ready.

ME: (shocked at the added request, as I usually have to beg and plead for that eventuality) Thank you so much.

NORENE: Now, could you do something for me? Could you call tomorrow and check on the status, make sure it's moving along so they'll be ready for you to pick up Friday?

ME: (completely, utterly stunned, as making such a call in the past led me to be lectured, snubbed or oraly bitchslapped) Sure, I can do that. No problem. Thank you so much!

NORENE: Well, thank you. And if you have any problems, you just ask for me, Norene. OK?

ME: (not sure I'm awake, as this must be a dream) OK. Thank you again.

NORENE: Have a nice day!

ME: You, too.



I hung up the phone and stared at it. Did that just happen?



Has the Rx Dick been replaced in my life by Nice Norene?



I have no idea what will happen when I call today. Lecture? Rudeness? Or more Nice Norene?



I'll keep you posted...

Ah, Pain & Insomnia: The Bitches Are Back

I'm not sure why, but the trigeminal neuralgia has been unusually ballbreaking this past week. These bouts used to be common before the methadone, but I've only had a handful of them since. I'm pretty proud of the fact that I haven't had to go to the ER for TN pain alone for almost four years.

The methadone has been such a blessing in my life. Before, I was hardly living. All day, every day, was constant, excrutiating pain. I understand torture, how it wears you down physically and emotionally. I lived it. And I don't want to go back.

Maybe it's time I increased my Oxycodone for breakthrough pain. I haven't slept more than four hours in the past two days, and there doesn't seem to be an end in sight. I haven't had to increase my Oxycodone in almost six years. I'm very wary of my tolerance level and of increasing my pain meds, but I can't bear the idea of my life going back to the way things used to be. Maybe I'm being over-cautious. It took me six years for the Vicoden to stop working and for me to have to step it up to Extra-Strengths, and then to Oxycodone. Maybe six is the magic number in my tolerance. I hope not; the reason I'm wary is that there are only so many pain options out there. I'm only 36, and I'll be on pain meds for the rest of my life. If I go through my options too fast, I'll be left out of options. And that is a concept not even worth considering.

And then there is the possibility that all this is just the usual changing-of-the-seasons MS calvacade of crap, and if I just hold on for a few weeks, it will pass.

And so I come to a decision: if I'm still having this much trouble one month from today, I'll make an appointment and discuss this with my doctor. Perhaps I need to go to a pain management clinic now, maybe there are other options I don't even know about. And I won't know, until I ask.

One month...

Shocking! Nerve Pain, MS and Me

Last night, I found myself in a familiar place: Shock Treatment. Gimme Gimme Shock Treatment? A great song, to be sure...but not a great facet of the MonSter.

"Shock Treatment" is how I refer to a common and very aggrivating symptom of multiple sclerosis: nerve pain. Mine is always centered on the right side of my body. This is not unusual; many (if not most) people with MS have a "problem side," where the vast majority of their symptoms reside. Mine has, from the beginning, been my right side. My trigeminal neuralgia is on the right side of my face. My leg spasms are almost always in my right leg; that's also the leg that has lost a great deal of nerve sensation, a sort of mini-paralysis. I use a cane because of my right leg. When I have optic neuritis, it's my right eye I can't see out of. When I get kidney stones, they are invariably coming from the right kidney. See a pattern?

Oddly enough, when I was 12 it was discovered that I am nearly deaf in one ear. You guessed it! My right one.

So it's no surprise that when I suffer from Shock Treatment, it's my right leg, arm, hand, foot and the right side of my ribs & lower back that gets the honors.

Shock Treatment feels pretty much the way it sounds: sharp, unexpected electrical shocks. They generally last only a second or so apiece, but they tend to occur in clusters, shocking me over & over & over. Sometimes, the shocks are mild and little more than annoying. At other times, they are so bad my body jerks uncontrollably and I cry out.

The worst nerve pain, of course, is the bane of my existance: trigeminal neuralgia. It is the great-grandaddy of all Shocks. Relentless, debilitating pain in the face. There is a reason why it is considered the worst chronic pain condition known to man. It is the heavyweight champion, more than willing to defend its title against all comers.

Back to last night...Jonathan and I were spending some much-needed time together. May through September is the busy season for his work, and it's not uncommon for him to work 14-16 hour days, 6-7 days a week, during these months. To make matters worse, the house we rented was, without any warning to us whatsoever, foreclosed. Through the grace of God we found a new home almost immediately, only three blocks away. While it was great to find this place (which is just amazing) so quickly and so nearby, moving is naturally stressful and time-consuming. Thanks to the still-too-warm temperatures the past month, I have not been of any great help moving. As a result of all this...my husband and I haven't spent a lot of time with one another. Now that the move is practically done, the busy season is winding down and the weather is cooling off, we're trying to make up for lost time.



The MonSter, however, does not respect romantic inclinations. Shortly after we put the girls to bed, Shock Treatment began to rear its ugly head. The Shocks began just above my right ankle, a tender area for this particular activity. As the night wore on, the Shocks became more unpleasant, more frequent and worse: they were migrating North for winter. By the time my upper arm was being bombarded, I began to worry about what might lie ahead: another painful bout of trigeminal neuralgia.



Now I was in a pickle. It was late. Did I eat and take a pain pill in hopes of warding off the TN? That tactic has no gaurentee of success. It also runs the risk of the nausea becoming so bad, I end up vomitting and causing the TN on my own. There was even the very distinct possibility that the act of eating in and of itself would make the TN appear. What to do, what to do.

I waited another hour. Still Shocks, but no TN. They had climbed back down to my upper leg & hip, and seemed very content to be there. I decided not to take a pill.

If my life was a game show, that would be the moment when the door I chose opened up to reveal a donkey. Or a goose. Or anything, except the prize I was hoping for.

The Shocks did in fact reach my face, a few hours later. And they did so out of the blue, and at full force. I choked down some food, which naturally made the pain worse, and took a pill.

Now comes The Waiting. As in, Waiting For the Pill To Kick In Oh Please Let It Kick In Soon. I spend a lot of my life Waiting.

The pill kicked in. And it wasn't enough. I take another. More Waiting, please. Boy, do I love to get seconds.

An hour later, and the pain had not subsided. If I take another pill, I will most definately be sick. And I'm in so much pain, if I get sick, I will end up in the hospital.

So I Wait some more.

By 5 AM, I was so exhausted I fell into a fitful sleep. Five hours later, I was wide awake. The Shocks were back, and so was the TN. It was very much as if they too had taken a short respite, and now that they were refreshed, they could attack me with renewed vigor and purpose.

I ate. I took a pill. I started The Waiting all over again.

Rinse and repeat. This is how I spent all of yesterday. And it's how I am spending the night. As I write this, it is 2:35 AM. The Shocks, for the moment, are gone. Perhaps they watched the TN torture me today and scurried off, knowing their better when they see it. Bow to your sensei, Shock Treatment.

And so I Wait. Will I be able to break the pain, or will I have to go to the ER? Will I be able to hold on until the doctor's office opens? Can I avoid throwing up, and what should I/can I eat to accomplish that goal? And if I do eat, how much worse will that make it? Why is it that I must eat to take pills to kill the pain, but if I eat to take pills to kill the pain the act of eating will make the pain worse?

And the most pressing question: will I ruin my husband's birthday today?

A Difficult Week

Temperatures are in the triple-digits here in Portland, which is not good news for people with heat-reactive MS, like me. It only compounds what was already a difficult time for me: my mother's 55th birthday was Friday, and the 11th anniversary of her death was Sunday.

Stay out of the heat, y'all....

Tin God Syndrome: The Hit-and-Run Doctor

If you haven't read the post below...I have had two run-ins with Tin Gods in the past few months. The one below, the Doomsday Doctor, is a thankfully rare beast.

This one, the Hit-and-Run Doctor, is not.

It is possible that Hit-and-Run Doctors are the most common of all forms of Tin God Syndrome. It is very rare that a person with a chronic health issue doesn't have a run-in with at least one, and usually far more than that. Of all the Tin God stories I hear, H&R Docs are the most common.

My story begins about a month ago. Summer started early in Portland this year, and temperatures were at near-record highs. Not good news for those of us, like myself, who suffer from heat-reactive disorders. All you can do is embrace the central air and cope with the symptoms with liberal doses of medication & good-old fashioned North Carolina sweet tea (of which I am an expert).

I've had MS now for well over a decade. My most hated symptom is not pain. It's not the loss of mobility. It's nausea. I absolutely loathe being nauseated. And while I cope with mobility issues rather stoicly, and I have a high threshold for pain which goes a long way towards dealing with that unpleasant aspect of MS...I am a giant crybaby about nausea. I am the least likely person on earth to become bullimic: the idea that anyone FORCES themselves to vomit is just beyond my ability to comprehend.*

It's just my bad luck that every summer, the Nausea Fairy comes to visit me in force. I have tried damn near every medication on the market. Phenergan worked well for me for years, but it's now to the point that in order to take enough of it to be effective, it turns me into a complete zombie. I almost enjoyed watching Rock of Love on it once. It's that bad.** One of the medications I tried last year was Reglan. I used it for about three days, and it was ineffective. I was switched to Zofran, which works very well (and the pills are super-tiny, making them very easy to swallow when you're feeling sick to your tummy---I'd like to shake the hand of the scientist who realized that). I put the remainder of the Reglan away in a box, and promptly forgot about it.

Fast-forward to last month: I was suffering severe pain and terrible nausea. And wouldn't you know it: I ran out of Zofran, and the pharmacy was closed. Desperate, I checked the medicine box and found the long-forgotten Reglan. I called the doctor on call (I had begun taking one different med since the last time I was on Reglan, and I wanted to be sure it wasn't counterindicated). I got the go-ahead, and took the pill. Within 20 minutes, I was nausea-free.

Since the Zofran is rather expensive, and the Reglan was working, I continued to take it for the next week. The only side-effect were some vivid and disturbing nightmares, but I can deal with nightmares. Nausea, not so much.

Then one day, I woke up and just felt WRONG. I couldn't immediately put my finger on it: but I knew something was up. As the day progressed, so did the feeling. But now, it was accompanied by some startling symptoms: terrible anxiety; confusion; tremors in my hands; a sensation of being freezing cold (during a very hot summer afternoon); a loss of appetite; and a tightening in my chest, face & jaw that was causing my TN pain to go into overdrive. I called the doctor, and waited for a call back.

While I waited...all hell broke loose.

I began to sweat, while still feeling freezing cold. My heart was racing and pounding, the anxiety went from mild to overwhelming, and it was coupled with a debilitating sense of paranoia. I couldn't cope. I began to have a panic attack...which is not like me in the least. Most people who know me would describe me as a calm person, and at that moment, I was the least calm person in the known universe. I felt like I was going crazy. I didn't feel like me at all.

The doctor called back, and told me that this sounded like a "known and not uncommon" (WTH?) bad reaction to Reglan, and I needed to go to the ER right away. By the time my husband raced home from work to take me, I was rolled up in a ball in a corner of the bed under three blankets, shaking and crying uncontrollably, startled out of my wits by the slightest movement or noise (confusing the hell out of the cat), trying desperately not to scream because I knew, with what little sanity I had left, that if I started screaming I would not be able to stop.

When I got to the hospital, I was almost immediately taken back to triage, where another startling symptom came to light: my blood pressure was sky-high. I have never had high blood pressure in my life, having dealt with the opposite for much of my life. I was then overcome by the need to not go back into the waiting room with all the people in it. I begged the triage nurse not to send me back out there. I cried, I pleaded. I had no rational reason for it; I was far beyond being rational at that point. I just knew I did not have it in me to face that room full of people. I just couldn't do it. The startled nurse called a doctor in, a very kind woman who took me by the hand and told me, "I know you think you're going crazy, but you're not." She gave me 2 Benadryl (the first and only time I've ever been given meds in the triage room) and told me that they'd take me back to a private room right away, and I'd be ok.

If only she'd remained my treating physician!

I was left alone for about 20 minutes, to see if the Benadryl would work. It didn't. A nurse came in, got that information, and went to get the doctor.

By the time H&R arrived, my husband Jonathan was there with me and I was once again crying uncontrollably. I was also feeling very sick to my stomach. My husband helped me to explain what was going on. As soon as he heard "pain," his demeanor completely changed. I'm accustomed to this, but usually the change is skepticism, annoyance, or rarely, pity. But this time, it was more like...fear. Reticence. Maybe even cowardice. I thought perhaps it was the paranoia, but my husband noticed it as well. I didn't much care; as long as he made this nightmare stop, he could be as fraidy-cat as he wanted to be. Besides, I didn't want any pain meds at that point. I just wanted not to go insane.

Over the next few hours, I got an EEG (I have a very minor inherited heart condition) and had some blood taken (which didn't go well; I have very bad veins, and they couldn't get much blood from me before the only vein they could locate collapsed). Before the nurse left, I told her the Benadryl was not working. I was worried that if these symptoms continued for much longer, I would have a serious attack of the trigeminal neuralgia as a result of this tight-jaw business. I asked to see my doctor.

The doctor did not arrive, another nurse did...with a cup. Oh, great. Another drug test! And I wasn't even in there asking for pain meds. I just wanted to be able to stop crying and hiding under the sheets!

I took the test. And asked to see my doctor right away.

Time went by, and the tightening in my chest & jaw became markedly worse. This did not help either my TN or my panic. When next the nurse came to check on me, my husband told her I was in pain and needed help. The Benadryl had not worked. I was getting worse, and the anxiety was overwhelming. The nurse wrote on a dry erase board that my "top concerns" were anxiety, nausea and pain. I asked to see the doctor. Again.

Finally, in comes the doctor. He sees the board and looks like he's going to have a panic attack himself! He seems to be barely able to speak. We talked to him, he murmured. I couldn't understand him; it was like trying to decipher the lyrics of an early R.E.M. song. It's the end of the what as you know it? Well, I don't feel fine!

I told him I felt I needed something for this anxiety, for the nausea, and yes, I now needed something for the dreaded "p" word. He asked me if I had any of my pain medication with me. No, I had left home in a terrible state, and for the first time since I was 14, without a pocketbook. He quite visibly paled. You would have thought I was asking him to remove a thorn from the paw of that tiger who mauled Seigfried. It was then that I put two-and-two together: this was a Hit & Run Doc! Oh, joy. I'm losing my mind, and I have the bastard child of the Cowardly Lion and Speed Racer for a treating physician.

The only semi-effective way of dealing with H&R Docs is to corner them: insist they make a decision, right there and then, that they deal with your symptoms (if you let them go "look something up," or "discuss this with a colleage," you'll probably never see them again). I told him I needed this disaster to be over: NOW. I had done nothing to precipitate this. My pain was not a matter of my having eaten nachos or stood outside in the wind or put on blush. I took a medication that one doctor prescribed, and another ok'd me to take. The reaction was a KNOWN AND NOT UNCOMMON one (I'm still trying to get over that morsel of information). I passed your little drug test, so what exactly is the issue here, H&R???

The problem with backing H&R Docs into that corner is that those doctors with the more advanced form of H&R will always respond in the exact same way: they will lie. To your face. With the guile of the junkie they not-so-secretly fear you are.

This one had it bad. And so he lied, and told me he'd send a nurse in right away with some medication for me. He confirmed that my "top concerns" were anxiety, pain and nausea. He asked me what I "usually take" for a bad TN attack, and what the dosage was. He even wrote it down, the deceitful thing. And off he went!

The nurse came back with something called Cogentin: a medication to end the bad reaction. I asked her if this would address pain or nausea. No. Of course not. I sighed, took the meds, and asked to see H&R, knowing full well the likelyhood of seeing that guy again was about the same as my finding Hoffa buried under the petunias in my backyard.

Time moves on, and I wasn't feeling much better. I told this to the nurse, and asked (again) to see the doctor. Instead, she returned with another dose of the Cogentin. I was not in the least surprised. Tellingly, neither was the nurse. Twenty minutes after that...the panic was gone. I stopped crying. I felt more like myself again! But the damage was done---I was in a full-blown TN attack. When the nurse returned (no H&R! What a shock!), she told me she was "having difficulty locating" H&R. "Anxiety" was removed from the dry-erase board. "Pain and nausea" were all that remained.

By this time, Jonathan had become exasperated, and went home to retrieve my pain meds. I took two Oxycodone, and waited for H&R to reappear. I was very worried about the nausea getting worse, as I had no medications for that save the Reglan, and I sure as hell wasn't about to take THAT stuff again!

We waited. And waited. And waited. The pain subsided. The nausea, thankfully, did not get worse. I got dressed. I just wanted to go home.

And then, some unpleasant news. That tiny little amount of blood they took from me? It clotted. They would have to try again. I refused. I had been stuck now, repeatedly, in both hands. They found one vein, and that obviously was inadequete and in any event, couldn't be used again. I was already bruised, badly, from it. I was gaurenteed site reactions. I was exhausted, I was embarassed by how I had behaved in the triage while under the effects of that bad reaction and I just
wanted to go home. I had had enough.

The nurse argued with me, but it was no use. I wasn't going to budge. I wasn't always that way. Once, I let an ER stick me eleven times, quite literally from my hands to my feet, trying to find blood. They didn't get a drop. I was in agony from site reactions for so long, I went to my doctor to see if there was a cream or home remedy or something I could try to give me some relief. She chewed me out instead. "If they don't find anything in three sticks, they aren't going to find anything," she told me. "Tell them NO. You have the right to do it; exercise it." So I did.

The nurse was seriously unhappy with me. "I wonder if H&R will show up now!" I asked Jonathan.

He did. But not to admonish me over the blood work: I was being discharged. I had underestimated the level of H&R Tin God Syndrome this guy had. It was so bad in him, that even the hint of an argumentative patient was enough to terrify. I had to go.

He never asked me if my pain or my nausea were any better, or worse. Not once.

I don't know which was more stressful: the bad reaction to Reglan, or being subjected to yet another unfortunate "victim" of Tin God Syndrome while having it.




UPDATE: I was given three days of the Cogentin, but it was inadequete. My doctor upped the dosage and I took them for another week. I am, for the most part, fine now. I do have a lasting, low-level anxiety that I can't seem to shake. Two days ago, I went to the clinic and got a prescription for an SSRI to combat it...via yet another new Tin God! I am attracting them like MAGNETS these days. The feast, after the famine. I will share that story soon...








*Please don't send me hate email or comments on this. I am not making light, nor am I showing intolerance of, eating disorders. My aunt has suffered through an eating disorder for decades, and I have seen firsthand the devastation it causes not only to her but to her family as well. My heart goes out to anyone battling an eating disorder, and to their loved ones.
**I am, however, making light of Rock of Love. My heart goes out to anyone who is forced to watch it, and their loved ones. And to the poor soul who does Bret Michael's hair extensions. We're down with
your struggle, buddy.