my pink toes

Bell Curve
Bell curve of normal distribution
from vlasta2's photostream

In statistical circles, I am called an outlier. When you look at a bell curve, nearly all the data is clumped toward the middle. There are a few data points far out at each end where the curve flattens. Those random data points are outliers. Those points are me. (Funny side note: a friend told me tonight that when her mom went back to school as an adult and studied statistics, she assumed “outlier” was a fancy French term and pronounced it “oot-lee-ay”.)

I have another friend with similar outlier tendencies. She walks in and tells the doctors “When you hear hooves, don’t think ‘horses’ - think ‘zebras’.” It took me a while to get it and then I laughed. Yes, most people would think that the sound of hooves meant horses approaching - not a herd of zebras. But with me, zebras are what you will get.

My friends are familiar with this phenomenon of mine. In fact, when I had my Lap-Band surgery, my friend Jen was pleasantly amazed that everything went so well. “Don’t take this wrong”, she said, “but with you, if anything can go weird, it usually will”. I was quite surprised myself. (Of course, I am apparently an outlier when it comes to the insurance end of the process, but that’s another story).

In researching a link for this post about outliers, I ran across this explanation: “An outlier is an observation that lies outside the overall pattern of a distribution. Usually, the presence of an outlier indicates some sort of problem. This can be a case which does not fit the model under study, or an error in measurement.” (emphasis mine)

So many of my medical issues “indicate some sort of problem” and are “cases which do not fit the model under study”. This is why it is so long and plodding with me – why there are so many false starts and hills climbed that end up not being very helpful.

This post started as something else and then morphed into this general observation. I have no little bon mot to close with, no tidy ending, no funny coda. I guess it’s fitting that this entry is an outlier, too.

Filed Under "Medical Freak(out)" on November 15, 2007 | Permalink | Comments (0) | TrackBacks (0)

Running low on spoons today

I have fibromyalgia, which means that on any given day, I hurt all over. Sometimes a lot, sometimes a little, but every day I’m in some sort of pain. It is mainly concentrated around my hips, and the theory is that although FM is not necessarily caused by a traumatic injury or motor vehicle accident, such events can bring out FM. I was in a serious car accident in 1991. The lap belt saved my life, but did lifelong tissue damage and since then I have been in pain every day.

After pursuing treatment for 2 years past my injury date, it finally became clear that something else was going on in my body beside an acute injury. I was fortunate enough to have a couple fabulous healthcare providers (sprinkled in with the many other unhelpful providers) who knew about fibromyalgia and suggested that might be what I had. I finally got a “real” diagnosis from a rheumatologist last fall. I already knew it was what I had, and my PCP has treated me as such, but I decided I needed the diagnosis in writing to help with my own emotional acceptance. Living in denial on and off for 15 years wasn’t very effective.

I still struggle with this illness. It’s one of those “but you don’t look sick” things. Yes, I know, I don’t look sick, but I’m in pain almost all the time. I don’t talk about it all the time, because I get tired of it. Sometimes I am biting the bullet and putting on the happy face, but if I didn’t, who would want to talk to me? I bore myself with the constant pain-awareness. I have a few people I can be completely honest with and I value that very much. Frankly, so many people don’t truly believe I’m in pain and I’m too exhausted and confused myself to educate them so I save my breath.

And if one more person tells me that they think all this mythical-achy-stuff is going to *poof* magically disappear when I reach my goal weight, I may either throw a bottle of painkilers at them (not likely, but tempting), or (more likely) burst into tears. I’m in tears now with the weight of this dilemma – when people say that they hope my pain will disappear when I lose my weight, they are blaming all the pain on me. They are saying “you are in pain because you are fat.” I weighed 190 pounds when I was in my accident in 1991. I’ve been in pain at every weight I’ve held since then– from 180 pounds all the way up to 312. I have other pains that are clearly related to my weight – like my creaky knees, sore heels, and lower stamina for some activities. But the constant achy pain and the debilitating fatigue are unfortunately here to stay. The pain is NOT MY FAULT. I have to tell myself this over and over again. In my house growing up, most everything was my fault, so I’ve learned how to blame myself for everything. I did not bring this pain on myself, I did not ask for it, and God is not angry with me. I am still in therapy and constantly reminding myself of these things. Please stop making it even harder.

I’m cranky today. I’m in a lot of pain. I wish this was not one of the main narratives of my life. But it is. With God’s grace and help I will learn how to incorporate this narrative into the cohesive story of my life.

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Here are some great links for helping understand those with chronic pain:
Anonymous Letter to People Without Chronic Pain (I’ll probably do my own version of this sometime in the future)
Tips for Friends of Chronic Pain Sufferers
Spoon Theory (AWESOME analogy of what it’s like to live with chronic pain)

I have found immeasurable support and understanding at ChronicBabe.com and most of these links were discovered through their great site.

Filed Under "Chronic Babe-ness, Fibromyalgia, Medical Freak(out)" on May 21, 2007 | Permalink | Comments (1) | TrackBacks (0)

My surgery is tomorrow at 10 am.

I'm getting nervous and scared. (Finally). I knew this was going to happen and was wondering when it would finally hit me. I'm so excited for "the rest of my life" to start, and I'm eager to get this done, but I'm still nervous.

I'm told that a common "first reaction" upon waking up from surgery is regret. I've heard it comes from the idea that they were feeling fine the day before and now they did something so invasive and made themselves feel so physically bad - on purpose!

I know I'm not going to have that reaction. I'm not trying to sound arrogant or special here, it's just that I have so many health and chronic pain issues (hardly any are weight related, by the way), and spend so much of my time in doctors' offices, having testing done and the like, that the hospital experience itself is not really out-of-the-norm for me. Also, frankly, I am in pain every day of my life. It's not like I'm going to go in feeling great (because I almost never do) and come out feeling worse than ever (although perhaps I am minimizing surgery, here).

Lastly, I had my tonsils taken out 5 years ago, at the age of 30. THAT, my friends, truly sucked. I was in horrible, horrible pain for 3 entire weeks. I knew I'd be bad going in, and it really was. I also knew it would be worth it to reduce all the throat and ear infections I'd had over the many years, and it was. The short term was horrible, but the long-term has been so worth it. I'm thinking this Lap-Band surgery is going to be the same way.

I'm starting to have butterflies and lightheadedness. I think it's because my habits are so drastically going to change. I'm getting the Lap-Band because I NEED the help to change my habits. If I could do it by myself without the Band, I would have. There are some deep psychological barriers I've had to changing my habits, otherwise they wouldn't so be so ingrained. It is going to be very very painful to change all these habits. I have been reluctant to change my habits for a reason. I know this weight has been my protection - my barrier against some deep hurts. I don't really understand why it's been so hard to let go of it, but I know there is much more here than just "eating too much because it tastes good". I'm scared to face the emotional issues. I'm so glad I have my therapist, my fabulous husband, and my amazingly supportive friends and family.

I feel like I'm preparing to climb a mountain: I know it will be long, hard, cold, exhausting, dangerous work. I'm going to slip. I'm going to feel like I've run out of air. Sometimes, I will hate myself for starting this journey at all. And then, someday in the next two years, I will hit the summit. I will look out from the top of the mountain and lose my breath at the beauty of it all. I will be scarred. I will have learned a lot. It will be worth it.

[Read more about my Lap-Band Journey at A Little Squeeze]

Filed Under "Journey, Lap Band::A Little Squeeze, Medical Freak(out)" on April 29, 2007 | Permalink | Comments (2) | TrackBacks (0)

My complexion is dry, dry, dry as a [insert your own old, tired simile here]. So dry, in fact, that I have to special order gooey, dewy, moisturizers. If I try to put apply my foundation without these emollients, by 10 am my face looks as cracked as a Renaissance fresco.

Apparently, all moisture in my face gravitates toward a few spots at a time, like black holes swallowing all nearby matter. This concentrated grease condenses into Japanese-monster-movie-sized zits. Zits so huge, that yesterday my two-year-old asked about them with great concern. Again.

If I use any anti-acne product, my skin reacts with vengeance - flaming out in even worse dryness, and adding a coverlet of small red dots all over my cheeks, making me look like an albino rhinoceros with measles.

Maybe this is the real reason I always get carded at the liquor store... the clerks must think I'm too young to have figured out how to TAKE CARE OF MY STUPID FACE BY NOW.

Filed Under "Everything Else, Medical Freak(out)" on April 10, 2007 | Permalink | Comments (3) | TrackBacks (0)

As part of the continuing saga of My Health, I have been seeing a sleep specialist. Even though he seems to be obsessed with my weight and gender, I’ve gotten used to him and am going along with his theories for now.

Back in November, I had a sleep test. (An amusing and uncomfortable endeavor whereupon one tries to sleep while being hooked up to myriad wires, watched on camera, and listened to on speaker. Every time I got up to pee (at least 10 times…I need to write about my Bladder Issues...), the tech had to unplug all my wires from a central board that hung on my chest. With all the electronically conductive goo in my hair and wires emanating from all parts of my body, I looked like Darth Vader’s eccentric aunt Medusa. I slept about as well as one might expect under the circumstances: hardly at all.)The small amount of actual sleep data that we were able to gather from that night indicated that I probably suffer from PLMD (Periodic Limb Movement Disorder). This means my legs twitch involuntarily about once every 40 seconds in bunches of at least five incidences an hour. Dr. Sleep thinks treading the PLMD would help alleviate some of the crushing fatigue I feel many days (and felt every day last year). So I’ve been on meds and last month finally got up to the dose he was aiming for.

This last month, I have had more energy and less fatigue than I’ve felt in a long time. Frustratingly, this extra energy is addictive, and often tries to convince me that I don’t really have anything wrong with me and just am really really lazy sometimes, but that’s a big enough topic for its own post…or two…or three…

Anyway, I ran out of my new medicine last night and only had enough for a ½ dose. Today I was greeted by a wall of bone-crushing fatigue and waves of debilitating pain. Coincidence? I don’t know. It’s encouraging to think that treating the PLMD could have such a beneficial effect. Unfortunately, after 17 years of seeking treatments, I am skeptical.

I see Dr. Sleep and his somnambulant nurse tomorrow. We’ll see if he thinks today’s fatigue and pain was coincidental (I have probably been over-doing it lately, and also feel I’m “due” for a flare), or related.

Paul says that Hope comes after Suffering, Perseverance, and Character. Sometimes it takes everything I have to try just one more thing, to endure one more doctor/specialist’s set of questions, but I persevere. Hope in God doesn’t disappoint, but sometimes the rubber-meets-the-road faith and hope work is hard work indeed.

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p.s. As I was crafting this post, my brother IMed me to let me know one of his best friend’s wives has leukemia. She, like me, has two small children. I am continually reminded that even though My Health sometimes consumes me, there are many more acute and frightening possibilities. My Health Issues sometimes prevent me from playing with and enjoying my children, but it does not have the fatal forecast of robbing me of them entirely. A sobering reality.

Filed Under "Faith, Medical Freak(out)" on April 09, 2007 | Permalink | Comments (0) | TrackBacks (0)

People used to say I was the happiest person they knew (some, amazingly, still do). I find that so interesting. I am a very optimistic, glass-half-full-make-the-best-of-it person, but I had a tough emotional climate in my home and was unclear about a lot. Yet, I seemed to have a sense of purpose and joy.

I credit all of this to God and the faith and hope he gave me. Yet I wonder how I got it. How did I feel so called to Him, in the midst of all the bad examples and pain and wrong images? Why did God reach into my life and help pull me bit by bit out of misery? Why did I not succumb to the pain and adopt one of my family’s long litany of unhealthy coping mechanism? (Well, you may argue that I have adopted some…but that’s another entry.) Sometimes this question drives me crazy. I can’t see eye-to-eye with Calvin on the whole predestination thing, so I have to stop looking for answers to this question pretty fast. I believe in the amazing, redemptive love of Jesus. Why is it for me? Why do others take a different path?

I think the answer is that there are lots of answers. I’m getting more comfortable with this, the lack of black and white in the world. I think the world is less black and white than I was told to believe. But instead of this leaving me in a world of grey, it leaves me in a world of a rainbow. There is more room for color, for expression, for beautiful paradox. I am in the middle of a long journey.

Underneath this “happiest” person is a lifetime of real thoughts, desires, heartaches and struggles that I’ve never effectively dealt with. I have deep wounds in places that will be difficult to heal. I’ve been on this real journey for about 5 years now. In a way, I feel that I’m getting to really know myself for the first time.

I know many have written about their journey before, and many will after me. Sometimes this realization paralyzes me – makes me think I have nothing to say that hasn’t been said before. Maybe this is true. But it is enough that I am saying it for the first time for myself. Hopefully someone will find bits of Truth and Hope in my journey, like I have found through the journey of many others.

Thanks for joining me.

Filed Under "Faith, Journey, Medical Freak(out), Meta" on December 27, 2006 | Permalink | Comments (0) | TrackBacks (0)

My oral surgeon called with the pathology report today.

Some of the cells looked abnormal. “Abnormal as in….?” I asked.

“Well, the pathology guys marked them as abnormal. But they were probably abnormal from trauma. Most likely not abnormal from cancer.

“I don’t want you to worry about it, but you should give me a call around March or so and schedule an appointment for a check-up. Enjoy the holidays. I’m sure it’s most likely probably nothing. I’m sure it’s just the trauma and nothing to worry about.”

Looks like I’m mostly, almost-positive, pretty-sure cancer free.

This is the adult life. No clear victories. No blacks and whites. Just small steps forward in what we trust to be the right direction.

Filed Under "Medical Freak(out)" on November 28, 2006 | Permalink

I'm sorry - I don't have the energy for a real entry today, but i've got to keep the NaBloPoMo thing up! I had Floyd and his smaller accomplice, Vito, removed yesterday. It hurts much worse than I thought it would and I'm more tired than I anticipated.

On the bonus side - I got to see 2 "punches" of my tongue. They used a tissue punch that takes like a core sample. They showed me Vito and Floyd swimming around their little biopsy bottle. Nauseating and fascinating at the same time...

Filed Under "Medical Freak(out)" on November 18, 2006 | Permalink | Comments (1)

I get my biopsy tomorrow. I'm relieved that it should be a non-event in the pathology department, but still a bit nervous about the surgery. It's a brief procedure, done under local anesthetic and then stiched up. I'll be sore a couple of days.

Good news for my book group: they'll actually be able to get a word in edgewise tomorrow!

Hayth! Thurn thoo paze thixty-sethen.. Thee how the author tathes the main charather...Oh nethermithnd.

Filed Under "Medical Freak(out)" on November 16, 2006 | Permalink | Comments (0) | TrackBacks (0)

I am now used to my body failing me. My joints, bones, ligaments, and nerves often fail me, unpredictably. I sense the spaces in between the elements of my body and know I do not control them. I am at their mercy. Sometimes the pain knocks me flat, wipes me out. I am trying to listen to the messages in these spaces, to learn what I can. I still cannot predict how my body will act, but I now know how to react. I have learned to rest. I have learned to hear the message even when I don’t understand it.

The possibility of cancer seemed altogether different. I felt I had been betrayed by my body at my very core. How could it be such a traitor? To give my cellular plans to invaders, letting them reproduce with abandon.

I am relieved to not have cancer. And still unsettled by my body. Unsettled by the whole experience.

Filed Under "Medical Freak(out)" on November 12, 2006 | Permalink | Comments (0) | TrackBacks (0)

But the new Dr is going to excise and biopsy him just to make sure. Today, he told me my chances of it being cancer were 0% and the chances of it being pre-cancer were 1%. Good news!

Unfortunately, this followed a similar cycle to many of the events I've had in my life: getting concerned about something and then having it minimized. The Dr in this case was wonderful, and not condescending at all. But in my childhood and in my adulthod, I've been traumatized by people who have minimized many of my feelings - physical and emotional. I was always told to "Shut up and tough it out" as a kid, no matter what was wrong. Happy (but not TOO happy) was the only acceptable emotion at my house and "fine" was the only acceptable answer to how I felt physically. Many times I felt bad, but was told I was oversensitive.

This has carried over into my adult life, and now as I fully come out of denial and pursue treatment for chronic pain issues, I bump into these situations again and again. Part of how I've been able to spend 16 years in on-again/off-again denial is that I was raised to not trust myself - to naturally fear whatever I feel. What I felt was always wrong, so how could I trust it?

It's a long, hard road to truth and healing.

Filed Under "Medical Freak(out)" on November 09, 2006 | Permalink | Comments (0) | TrackBacks (0)

I saw the oral surgeon today and he said my tongue lesion was most likely callousing from irritation, but he wants to excise and biopsy it. He says with white lesions (like mine), they are usually (80%) non-cancerous and I have no other lifestyle/age issues that would indicate a predisposition to cancer.

Unfortunately, there are only 3 doctors in the greater Seattle area that are in my network to get this procedure covered by my insurance, and the Dr. I saw today is not one of them. So, I had to make an appointment with another doctor on Thursday for evaluation. After that, I'll have to make another appointment for excise and biopsy. Fortunately, this in-network doctor was recommended by the Dr. I saw today.

Of course, I also had to spend at least half an hour on the phone with my insurance company. They said they covered 100% of "reasonable and customary fees". I asked them what the number was - what is the amount they consider to be "reasonable and customary" for this procedure. It's like playing chicken - "you tell me"..."no, no, you tell me". Finally, after being on hold for over 5 minutes, she gave me a number, immediately followed by the disclaimer "but this could change at any time". Um, thanks for the help?

I'll let you know when I know any more. Looks like it will be at least 3 weeks before I get any real results.

Filed Under "Medical Freak(out)" on November 06, 2006 | Permalink | Comments (0) | TrackBacks (0)

I went to the dentist yesterday. I am 3 months overdue for a cleaning, because I finally realized I disliked my other dentist so much that I was not setting an appointment because I was dreading going back there. The office had a weird vibe to it - like I was walking in to a group of students serving an in-school-suspension, but without the sly humor. The hygenists were barely civil to each other and the doctor addressed his staff in as few words as possible. The first 2 times I went in, I thought it was me......but then I realized the 3rd time I went in that they had a new receptionist EVERY time I came in (that's every SIX MONTHS). That, and the great sighing that accompanied any task they had to perform for me, finally convinced me to switch.

Aaaaanyway, I finally made an appointment with a different dentist. I expected to be in and out in 40 minutes. I had X-rays taken, chatted with the hygenist, showed her the sore on my tongue, discussed my coming back for a cleaning, and then the doctor came in. She looked around, did the 2-2-1, 2-3-1 thing, and then looked at my tongue a couple times. When she was done, she rolled her chair so that she was right in my face and told me that she was very concerned about the thing on my tongue and I needed to see an oral surgeon right away.

I told her I was sure it was just a cankersore I got from postponing my cleaning those extra 3 months and that it was getting better. I said I'd had it a bunch of times before, and it always resolves itself. "So, why do you want me to see an oral surgeon about it - can he help check for teeth clenching or whatever else is causing it?"

"No. You need to see an oral surgeon right away so that he can excise the lump and have it biopsied. By the way, have you ever been a smoker or tobacco user?"

Huh? She repeated this to me, and stressed the urgency of the timing with the dental assistant twice. Then I was lead out to the reception area, followed slightly after by the assisant. With wide eyes, she said the doctor had told her AGAIN how important this was and that I could not leave until I had the appointment.

Apparently convinced by the gravity of the situation, the oral surgeon squeezed me in for this Monday.

I thought I was handling this pretty nonchalantly, in a pocucurante fashion, but then I broke down in the afternoon. On top of everything else going on with My Health, this is positively overwhelming. This year has already been so immense in the list of things that have Gone Wrong. And this, this wasn't even on my RADAR!

My good friend jokingly asked me what the big unconfessed sin was in my life. That was a joke, right? Right?

Filed Under "Medical Freak(out)" on November 04, 2006 | Permalink | Comments (0) | TrackBacks (0)

As part of the ongoing saga that involves the state of My Health, I finally got the results from my sleep study today. First, I had the great experience of having myvitals taken by a nurse that kept yawning. She shuffled sleepily around the clinic, in search of the large blood pressure cuff. I made a crack and she laughed, telling me she was the poster child for the clinic. I was a bit concerned that the doctor doesn't seem to have been able to help his own nurse...

The sleep study doctor is an interesting fellow. He can't be any older than 40, and I'd put my bet on younger. He has a very heavy Asian accent, and he doesn't seem to have a clue what to do with me. We talked about the results (add another diagnosis to the pile: Periodic Limb Movement Disorder) and then he started lecturing on my overuse of Sudafed. I told him it concerned me too and that I talked about it frequently with my PCP. He mumbled something about how dangerous it is, especially for wgghmrty patients. Huh? He had already made many comments about my weight (which for the record, is significantly greater than it should be), so I thought maybe he said "weighty" patients. I asked him to clarify. He said "Sudafed is not good for lady patients".

Excuse me? LADY patients? Did you just call me a LADY patient? What, does he expect me to fall over from an attack of the vapors?

Then he went on to explain, "Yes, there's a paper out saying Sudafed might not be good for the minds of lady patients". Um, okay? So, does he think I'm making everything up because my uterus is jumping around in my body?

No wonder I've spent so much time in denial instead of pursing answers about My Health. Unfortunately, I've had this kind of experience far too many times.

Filed Under "Everything Else, Medical Freak(out)" on November 02, 2006 | Permalink | Comments (0) | TrackBacks (0)