Mar 31, 2009

questionable advice

I know that my friends are well meaning and have nothing but my best interest at heart. However, I have been a little surprised lately by some of the suggestions I've received from them about my health.

Here are some recent ailments that I have been advised of:
  • Adrenal Fatigue - although my levels are well within normal, I am told that "western" medicine lab tests are not sensitive enough to pick up on this ailment. The treatment? Lots of rest and bovine adrenal supplements. Is it just me or does this sound like a really bad idea?
  • Candida (yeast overgrowth) - I am the first to admit that a yeast infection is nasty, nasty, nasty! I am totally behind a good anti-fungal treatment when warranted. But the idea that candida is growing throughout my body, raging through my innards just doesn't resonate with me. Unless one's immune system is severely compromised, I think we can tick this one off the chart.
  • Wheat Allergy - despite having been tested for celiac (twice), there are still friends of mine insisting that I must have a wheat allergy. This one isn't totally off-the-wall, there are real cases of wheat allergies, but living a wheat-free lifestyle is hard work. At least it doesn't involve eating cow glands, so I suppose this one is at least a possibility.
I will be the first to admit that modern "Western" medicine doesn't have all the answers. It is tempting sometimes to want another perspective, another option on the table.

I suppose I just like to stick to things that I can research in peer-reviewed journals. Am I being too closed-minded?

the real me?

After weeks of tapering Celexa, I finally reached zero last weekend. And while I still have two other antidepressants floating around in me, my personality seems to have shifted. I have become angry and agitated.

What scares me most is that I no longer know the "real me". Without the meds, am I really an angry person? Or is the "real me" when I'm on the meds?

I feel totally overwhelmed.

Mar 30, 2009

cranky counting

Eight days of a constant migraine headache

1 broken central vacuum requiring service call

1 broken nearly-new washing machine (warranty expired) requiring service call

1 broken floor vacuum cleaner (beyond repair)

1 outdoor hose frozen and broken requiring service call

2 dogs, 1 tearing the house to shreds (he's a puppy, I have a headache)

1 paper left to finish

1 presentation left to present

1 missed episode of House

0 mg cipralex onboard (tapering complete)

Penelope is cranky tonight. Really cranky.

a question of trust

I came across this article today on Salon that caught my eye. It seems that one of the most reputable journals of medicine, the JAMA, is angry at a 'whistleblower' who pointed out a potential conflict of interest.

The article states that Dr. Johnathan Leo - a professor with the Lincoln Memorial University in Texas - noticed that the author of an article published in JAMA about Lexapro failed to disclose a financial relationship with Forest Labs, the company who make Lexapro.

I took the time to read JAMA's response and I found them to be quite defensive.

Journals are the 'go to' source for trusted information on health issues. Physicians make prescribing decisions based on information gleaned from the latest journals, patients rely on this information to be neutral and reliable.

It's a question of trust. It is vital that conflicts of interest be illuminated. If my doctor prescribes a medication for me, I want to be certain that their judgement is based on objective, neutral reporting of well designed studies.

I am not saying that the results of the Lexapro study were invalid, only that a lack of disclosure on the part of the author calls the results into question.

Here's hoping that this will be a wake up call for journals and researchers who publish in them.

Mar 27, 2009

forced to keep mirena?

Why do some health care providers feel that they are entitled to force their patients to keep unwanted Mirena IUDs?

I recently came across a blog post from a NP where she vents her annoyance about removing a recently inserted Mirena from a patient who was concerned about the side effects. The majority of the comments she received are almost more disturbing than the original post itself.

Tales like this are repeated frequently across the web - women told that they must keep IUDs that are causing them discomfort. Adding to this concern is the reluctance of other health care providers to remove an IUD that they themselves didn't insert.

I can't for the life of me understand why a provider would be reluctant to remove an unwanted IUD. It is a simple and quick procedure. Do they not believe patient's reports of side effects?

Am I alone in thinking that this kind of behavior is offensive?

Mar 25, 2009

frustrated, desperate

I'm scared.

For the past few years, I have tried to hang in and be a 'good patient' as a host of symptoms started to steal away my life.

Only a few years ago I was a busy health professional with an enjoyable career. I worked out regularly, did yoga three times a week, went out for dinner with friends, performed in a band, went rock climbing in the mountains...

Now I am a student on an LOA who rarely leaves the house; spending most of my time trying to get enough energy to do basic chores. 

I stopped seeing my friends, as I was sick of always talking about what was wrong with me (a hard topic to avoid, since it has eaten away at every part of my life) My world has become so small.

I would give just about anything to put on my running shoes and just RUN again.

The past three days I have been mostly in bed, in the dark, with a migraine. Three days of nausea, diarrhea, body aches, and unrelenting pain in my head. F@*k!! I've had enough.

Last Sunday I was in church, during communion I started to pray. I feel like I am dying. There is no way anyone could feel this shitty and not have something seriously wrong with them. Why can't anyone give me an answer??

I keep getting referred to specialists and then...wait...

My psychiatrist - after two years of working with me - isn't sure anymore that I have a mood disorder. He thinks something else is going on; BUT, both he and my Primary Care Physician can't agree on which type of specialist I should see, so I will be seeing them all:

- Rheumatologist
- Internist
- Neurologist

I simply can't live like this any more. I am desperate. I need to find an answer. I cling to the hope that if I have a REAL diagnosis, then perhaps there might be a treatment. 

I am in need of hope, or at least a "good day" to help me get through.

Mar 18, 2009

mirena IUD & depression

Last summer I was finally starting to feel better. My energy had increased, my mood was stable, things were finally looking up.

My husband and I talked about the possibility of another pregnancy, but the postpartum depression was still too vivid in our minds to risk again. Still, we weren't ready to give up 100% on the idea of a future baby.

I visited my doctor to discuss an IUD (as I have clotted previously, the pill was out for me). She suggested I try the Mirena, an IUD that provides a very low daily dose of progesterone. I was told to expect that with the Mirena I would eventually no longer have periods (sounded good to me).

I had the Mirena installed on a Friday. By Saturday morning, it was clear that something was very wrong with me. I was in tears, angry, anxious. I felt like I wanted to crawl out of my own skin. I felt like I just didn't want to exist anymore.

My husband asked me if the dramatic return of my PPD symptoms could be related to the IUD. I hadn't even considered that! After googling for a few hours, I came to learn that Mirena wasn't for everyone. There were far more potential side effects than I had been warned about.

Searching for the product monograph online, I was shocked to find a clear warning that the Mirena IUD could re-trigger depression in women who had a history of the disease.

I was angry with my physician for prescribing me something that had undone nearly a year of healing. I was angry with myself for not doing the research on possible side effects myself before making my choice.

I tried to have it removed over that weekend, and I couldn't find anyone who would take it out!

First thing Monday, I was back at my doctor's office to have it removed. She apologized and told me that she hadn't considered the effect on my depression. I appreciated her honesty, and was just glad to get the damn thing out of me.

It took several months for my moods and my body to get back to where it had been pre-Mirena.

Many women use Mirena and have great experiences with it - to them, I say "wonderful"! I was not one of those women. I'm writing this post today to alert women who have a history of depression of this potential side effect of Mirena.

Mar 16, 2009

still grieving my miscarriage

Two years ago this week I conceived. I found this out from my manicurist. While painting my toenails one day, she said to me "You're pregnant". How she could tell, I will never know, but she was right.

I had never really known if I wanted children, and given a history of clotting disorders, wasn't sure it was even well-advised. Nonetheless, I was excited and did everything 'by the book'. No coffee, no alcohol, limited fish, you know the drill...

We started to plan, we were building a new house at the time and designed it to have a nursery connected to our master bedroom. We picked names for either a boy or a girl.

And then on our moving day, I started spotting. An ultrasound showed no heartbeat at 12 weeks. While the movers were busy taking the boxes to our new home, I was busy losing our future child.

Surprisingly, I didn't take it as hard emotionally as I thought I might. I understood that sometimes these things happen and that we could try again.

What I didn't plan for was the crash. About six weeks later, my brain fell apart. I stopped remembering things, had trouble concentrating, experienced confusion, could no longer chair meetings reliably. I felt absolute fatigue and despair.

I was diagnosed with postpartum depression. Treated with a combination of Cipralex, Wellbutrin & Risperdal. It felt like I had left my body, was floating around watching my life from outside of myself. I couldn't carry on a conversation, couldn't feel much of anything, actually.

Falling apart was an awful experience, it involved giving up my career for which I had earned three degrees and considered my identity. I lost my job, my confidence, my life as I knew it.

Two years has gone by and yet still the grief hangs there. As does the question, was it really postpartum depression? Maybe I was misdiagnosed and that might explain why I failed to respond to medication.

Will there ever be a chance to try again? Do we even want to risk it at this point?

Holidays are a good time for reflection, and somehow, despite the noisy children in the hot tub and the screaming babies at breakfast, I am still wondering...

Mar 15, 2009

sun stroked?

I've never been much of a "sun person". While others are lying on the beach soaking up the rays, I am covered up with hat, towel, sun umbrella and 45+SPF lotion looking for a nearby palm tree for shade.

Despite taking precautions, it isn't easy to avoid the sun on a Mexican beach the past few days I decided to lotion up and get outside to enjoy the weather.

Sun day #1 - Migraine, had to come back to the room and drug up and sleep it off.

Sun day #2 - Touring the ruins, body ached, mood was awful, felt feverish, so fatigued I had to sit and rest repeatedly, slept during the car ride 4 hours feeling miserable.

Sun day #3 - Sat in the sun at the pool today for about an hour, went back to my hotel room feeling nauseous, had chills, slept for a few hours, woke with severe muscle aches.

The only days I've felt well are the ones I've spent inside or in the shade. I can only conclude that the sun just doesn't agree with me. Either that or I have a really strange virus. Am I a complete hypochondriac? It would be laughable if it wasn't so miserable.

Sometimes I feel like such a wreck!!

Mar 14, 2009

cranky on the ruins

So you might ask how someone who has now been on holiday since mid-February could possibly have a bad day?

I think it's being tired , as I was up at 6:30 am to go visit the Mayan ruins this morning. Lately it's been hard to fall asleep. I notice that when I'm tired, I am cranky and often teary. Sometimes it is easy to mistake it for depression, but it usually resolves with a good nap.

My fatigue was in full force. It takes a surprising amount of energy to spend a day touring. My husband really deserves a travel companion who has his energy and stamina.

Does anyone else feel like a sad, petulant three year old when they are short of sleep?

Mar 12, 2009

heaven is real (or finding my "new normal")

Standing at the airport bookstore, only moments before boarding my flight, I grab the first book that catches my attention, throw some cash on the counter and run for the gate.

I squeeze into the seat next to the window and realize that I have selected the book "Heaven is Real", by Don Piper. I had never heard of the author before, despite this being his third best seller.

In a nutshell, Don Piper claims that he died for 90 minutes following a terrible traffic collision and was brought back to life. In that time, he says that he went to Heaven. He feels that his mission today is to spread that news with people.

Sometimes I struggle with my Christianity. Am I being called? What does God want me to do? Could he please send me a very clear text message??

Obviously I don't know if the author really died for 90 minutes, and while I tend to believe him, that is not important really. What is important is how he describes coming to the realization after his accident that things would never be the same for him again. With his myriad of injuries, he was going to have to find his "new normal".

This book was worth 10 therapy:

I have spent the past 2 years waiting for the 'old me' to return. Waiting until I was healthy enough to be a rising star again, to resurrect my great job and excellent professional reputation. BUT....what if the 'old me' doesn't exist anymore? What if she never will? In short, what if THIS is my NEW NORMAL?

As simple as this sounds, this small shift in my thought process feels like it has liberated me: I may never get better!

I may never be that high performing, straight A honors student ever again. Or the high ranking health professional - maybe that is gone for good too.

And you know what? It won't matter.

I need to discover what my new normal will be. To find a way to be kinder to my self and honoring of my body's limitations. To use my talents to offer hope to other people.

Heaven is real. It's just hard to see from behind the fog of depression.

Mar 7, 2009

it's good to be home

vacations are great, but some of the best things in my life were just waiting for me to come home.

Mar 5, 2009

my titers (or lupus part II)

I just got my lab results in hard copy. I thought I would post them to see if any of you can make more sense of them than I can:

ANA: Positive
TITRE: 1:160
PATTERN: Homogeneous pattern
Speckled pattern

Mar 1, 2009


I learned something new recently; I am a "synesthete".

Synesthesia may in fact be the coolest thing about my otherwise challenging brain.

Never heard of it? I hadn't either until last week. But after coming across an article about it, I had this "aha" moment where I realized that what they were describing fit me perfectly. Oddly enough, I had never considered that other people didn't taste words or hear colours!

For me, the worst is the word "terry", it is light green and tastes awful, like bitter dish soap. The name "Linda" is a much darker green, and is a pleasant taste. Other words are blue, no matter what.

I also learned that the way my brain conceptualizes days of the week and months of the year is unique in that I see them as forming a shape outside of my body.

Take the test and find out if your brain is as cool as mine ;-)

the end of my holiday

I've taken a break from blogging whilst I've been away on holiday. It was nice to sit out in the sun, relax on the water and feel like a normal person once again. And I did feel like a normal person!

My family is amazed by how well I've been doing. They have told me it's like having the "old me" back with them.

Of course, as soon as I return home, I'm scheduled to complete my tapering of my medication, which I put on hold so I could enjoy my trip. Considering three weeks ago I had to have my family make me toast and tea and that my brain forgot some very important basic facts, this is not an idea I relish.

I've been offered a very nice contract when I return home, but am very nervous to accept. I know that I could do it today, but with my condition lately, there is no telling what tomorrow might bring. Also, it would involve traveling, which I am about done with now!

I will be very happy to see no more hotels for a long while. I am missing my puppies and my kitty cat so much now, can't wait to be home and give them all a cuddle.