Healthy Blogging

Posted on December 8, 2009 by queenofoptimism

I have the most extreme fatigue I have ever felt.

I could fall asleep at any moment of the day.  I am sleeping 8-12 hours a day and still am yawning.  I’m just not certain what is going on.

Could it be the anemia? Pneumonia? Leg problem? Gastro problems? Or is it something more nebulous

If only my fatigue was this beautiful.

such as exhaustion?  I don’t know but I hate it.  No amount of sleep helps and my nemesis, guilt, finds a way to get nestled in and cozy.

As I write this, I think of healthy blogging, social media, etc.  When does our interest in our blogs, Facebook, or Twitter become unhealthy?  I think of this in relation to Dr. Rob’s blogging exit.   For me, I had to accept (or semi-accept) that it’s okay for me not to have over 100 friends on Facebook.  When it comes down to it, I don’t value myself against the number of friends I have on facebook and I don’t believe anyone really does.  However, there is a temptation to try harder, to be more, to do more with our social media and blogs.  I’ve toyed with this myself.

Should I be actively searching for Blogophites to follow my ramblings so that The Queen of Optimism can become an award-winning famous blog?  Should I be ashamed of the number of visitors to my blog?  Should I be trying harder?

It’s not in me and likely never will be.  While I will likely never lose hope for making a marked achievement in my career, I will likely never be looking to turn this blog into something other than what it is.  It’s me, talking about my medical stuff, hoping it will resonate with someone else and most of all hoping it will give another poor sicky a helpful search engine result.

I enjoy interacting with those who read my posts and know I do not do enough to keep them interested and coming back for more.  With any luck, they will continue to check in with me anyway.  Thankfully, my blogging has not negatively impacted my life in any way.  If anything, it has helped me, even as I face this tremendous bout of fatigue.

How do you stay healthy with your blog, twitter, facebook, etc.?

PS – thanks for reading.

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Drive-thru Gastroenterology

Posted on December 7, 2009 by queenofoptimism

Today was my first visit with a Gastroenterologist in about 10 years.  My first visit and first colonoscopy was at age 9.

I’m scheduled for a colonoscopy (my third) and an EGD – esophagogastroduodenoscopy (my first).

If you want a laugh, do an image search for gut.

Today was my first real experience with the downside of having an HMO.  I had a quick review of systems with a resident (who was awesome) and a brief exam – just some pushing on my abdomen.

Next, the Gastroenterologist let me know I need both procedures “to make sure you don’t have something very, very serious going on like Barrett’s Esophagitis, Colitis, or Crohn’s.  If you don’t have Barrett’s Esophagitis, Colitis, or Crohn’s then you have Irritable Bowel Syndrome.  Are you familiar with IBS?”

“Ye..”

“It just means you have a sensitive gut.  Here’s a pamphlet.  You have Super-Insurance-Giant  HMO so you won’t follow-up with me, you’ll follow-up with Dr. PCP.  Ok?  So have a Merry Christmas because I won’t see you again.”

“Ok.  Can I get these procedures done before the end of December?”

“Yep just tell the ladies.”

I was ushered to a room where three schedulers sat.  It was a systematic process, I was scheduled, and boom – out the door.  Prior to leaving, I had to sign a form acknowledging that the Gastroenterologist will not be following up with me – that all future related information will be communicated by my PCP.

I have a great PCP, so I don’t mind too much but is a PCP really the best person to manage Crohn’s?  I only pick Crohn’s from the list of possibilities because my sister has Crohn’s and in the past, I was told I had the beginnings of Crohn’s.  Not sure what that really meant but that was during my scaredy cat phase.  I did whatever I could to avoid the possibility of scary medical news.

For both procedures, I have to avoid Ibuprofen for at least 5 days prior as well as all multivitamins and my iron and Vitamin D.  I’m a little bummed that I need a driver for both procedures.  We simply have no one to help us out in these situations and due to a recent extended illness my husband has had, he is out of sick time for more than a year.

I’m incredibly grateful to have health insurance, even if it’s an HMO that in some cases, offers me only drive-thru service.

How’s your health insurance?  Have you ever experienced the office visit drive-thru?  Is a PCP the best person to manage a Gastroenterological problem?

Love to hear from you!

All links are to health information are to the National Institutes of Health because I essentially work for the Federal government and I am indeed here to help you.

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Doctors Say the Darndest Things

Posted on December 2, 2009 by queenofoptimism

Today I laughed when I found out a doctor made a mistake with me.  Even though the error caused me some unnecessary concern, it’s funny nonetheless.

Today, I saw my PCP for a pap smear.  It’s been three years which seems like a long time, but some of the guidelines for

You're funny.

their frequency have changed when you’ve been with the same person for a long period of time.

I can’t say I wasn’t nervous about the exam.  When I was at the ER on Friday (when a got a diagnosis of pneumonia), the resident doctor also insisted on doing a pelvic exam because of my abdominal pain.  It’s never good when a doctor, such as this doctor, says “I’m not sure what I’m looking at here.”  The attending doctor came in and all I heard was HPV.  The resident doctor went on to tell me there was evidence of significant cell changes on my cervix.

“What did I hear about HPV?”

“Well, it looks like the changes that appear with HPV or HSV”

“Like an STD?”

“They can be dormant”

“For how long?”

“You also show evidence of Pelvic Inflammatory Disease.”

“What?  Two STDs?  I have a pap scheduled with my PCP for Tuesday.”

“Be sure to go to that appointment and talk with your doctor.  In the meantime, we are treating you aggressively as if you have PID.”

I really didn’t get that worked up about it.  I have a super-mega-unfounded fear of STDs but remained relatively calm.  When I told my husband, he first worried I would have cancer and die.  His second worry was that I’d think he had been unfaithful and gave me an STD.

After everything I’ve been through medically, I know I can handle anything.  Even an STD.

I let Dr. PCP know all these details.  She first examined me for any exterior vaginal skin changes that could make the resident doctor suspect something.  She saw nothing.  She completed my pap smear and let me know she saw nothing abnormal.

“Was it a resident doctor?”

“Yes.”

“Did he use a speculum like I am?”

“I think so but it felt bigger and more uncomfortable than yours.”

“You know what that doctor was looking at?  The underside of your bladder.  He needs a few more pelvic exams under his belt and I’m going to call him and let him know.”

We had a laugh and I had some sighs of relief as she continued to let me know that she saw nothing out of the ordinary and the long list of STDs they tested me for in the ER all came back negative.

I just think it’s humorous that as a 36 year old woman, I looked like someone who might have not one but two STDs.  : – )

It’s a nice reminder that doctors can be very, very wrong some times.

Just like anyone else.
I enjoy your comments.  Always feel welcomed to leave them.  Thank you.

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Season 2 Premiere

Posted on November 29, 2009 by queenofoptimism

I woke up on Thanksgiving with a fever of 101.5.  This is odd for me.  I rarely have a temperature over 97.9.  In pure Patient Q style, the events that followed seem to be even more odd.

My Thanksgiving fever was preceded several weeks of fatigue and a busy schedule and a bad case of hemorrhoids. Not to mention some really unusual bowel movements.  And, they only became more unusual on Thanksgiving Eve.

Of course I'm thankful.

Six hundred miles from home, I did some research to find an Urgent Care center.  I discovered that within a 30- minute-drive radius, there was no such thing as Urgent Care centers. (another post on that subject at another time)

So, I called and left a message for Dr. PCP’s message service.  She called me.  She felt it was likely that I had diverticulitis and she wanted to get me started on antibiotics.  She gave me a long list of symptoms to watch for and suggested I may consider going home before heading to an ER out of state.  Knowing this was a possibility, we made plans to head home sooner than planned.

After a long drive home with many stops, I evaluated myself and my symptoms.  As my abdominal pain grew and shifted and it had now been 72 hours since I ate, I headed to my local ER. I explained the situation to the ER doc and expected that he’d prescribe the second, more diverticulitis-focused antibiotic that Dr. PCP wanted to wait 24 hours before prescribing due to possible side effects.

But no.

It’s not diverticulitis.  C’mon, would anything related to my health be that straightforward?

Of course not.

The abdominal CT scan showed pneumonia.  As for an explanation for the abdominal pain, that’s still up in the air even following a pelvic and rectal exam.  A lot of unpleasant possibilities were passed around as possible contributors but in the end I am being treated with aggressive antibiotics for pneumonia and what is described as pelvic pain.  I’m told I need a colonoscopy and pap smear.  And that’s where the story ends for now.

This week, I have a couple of appointments that were scheduled well before Thanksgiving including one for a pap smear, one to discuss a colonoscopy, and one with Neurologist #1.

So, it appears the Thanksgiving holiday has brought the premiere of Season 2 of The Queen of Optimism.  How serendipitous!  Hope you enjoy the show!

Hi, yes, thank you for reading.  I would love it if you left a comment.

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Knowing when to fold ‘em

Posted on November 20, 2009 by queenofoptimism

As much as I contemplate my stamina and interest in sticking with the journey of getting to the bottom of what’s wrong with me, I’m not willing to retreat at this point.

I am not willing to accept that I have an unnamed disease and simply move on.  I need to know more.  For me and for my son who is following too closely in my footsteps health wise.

I’ve never been one to throw in the towel on much of anything.  It’s part an innate competitive nature and part compulsiveness to be a person with an extremely high follow through factor.  Nevertheless, I’m giving up.  I’m giving up on NaNoWriMo and trying desperately to give up on thinking things will improve in my work position.

I’m not abandoning my novel entirely.  I am enjoying coming up with ideas and focusing on art for art’s sake.  However, I am taking off the pressure to “win” by completing 50,000 words by November 30.  I had no way of predicting that November would bring me several days of working 10-12 hours, PTA volunteer commitments well in to the evening, illness, child illness, a Thanksgiving trip out of town that will be delayed by an enormous work event, or an intense fatigue that has creeped up on me.  Please do not mistake these statements for excuses.  I could commit to all-nighters to get to 50,000 words.  However, I am choosing not to.

It’s difficult for me to bow out of the race for NaNoWriMo.  That’s not my typical style.  I believe I can do it all and set out to prove it every day.  This way of living has finally caught up with me.  It’s disappointing.  I’m exhausted beyond what I thought possible.

I may not be so opposed if it were Boston Cream pie.

It doesn’t help that my work situation has suddenly become more challenging.  I’m not going to complain because we are actually suffering from the opposite problem of other businesses right now.  Still, it is intense and I am having figurative dysphagia with the amount of humble pie I swallow in the name of keeping others from getting blamed.   It is what it is and today, it sucks.

I can’t help but wonder if I made a poor decision a couple of years ago.  I was in the running for a job that would have lead me to experts in the field of autoimmune disease.  At the same time, I received a promotion and when comparing my commute, salary, and benefits, I took the better financial deal by staying where I am.  Would I be any closer to answers with my health had I gone the other way?  It’s so curious.

All I can do is hope for an end to this fatigue, answers that will improve my quality of life, and more simply – hope for a better day.
Thank you for reading.  I genuinely care about your comments.

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Damn that black bile

Posted on November 14, 2009 by queenofoptimism

My melancholy mood is not inspiring me to work on my art

ATT00005

A visual of my melon-choly. heehee

(nanowrimo novel).  More proof that I am not, in any way, an artist.

 

I lie here with a deep fatigue.  Busy work week, two nights of working until 7pm and one night of volunteering for the PTA until after 7pm.  I lie here with my leg thing.  It’s painful, I limp when walking, and have limited foot dorsiflexion.  I lie here planning out my weekend to include little to no going up and down stairs and as little walking as possible.

It’s been nearly 4 months since my muscle biopsy and I still have no answers.  My PCP doesn’t know who to send me to about having atrophic fibers both I and II.  My ENT suggests going back to Neurologist #1 and I did make an appointment for December.  Though, I am pessimistic about it.  I’m not sure how she will respond considering all that has happened since she blamed my thyroid and sent me on my way.

I saw Dr. PCP this week.  Huh hum.  I have something I prefer not to discuss with anyone but will because I only finally mentioned it based on things I read at Dr. Rob’s blog and Dr. D’s blog.  I’ve had hemorrhoids for the past 3 months that don’t do away with OTC treatment.  I’ve seen Dr. PCP plenty of times during those 3 months but didn’t mention.  Turns out they are severe and my internal skin is severely inflamed.  Dr. PCP says they could be related to my other problems.  I have a hem treatment kit that my friendly neighborhood pharmacist demonstrated to me while mentioning anus and rectum far more often than I needed.  he also asked about the size of the affected area.  I still wonder if he was messing with me.

So here I am.   No known reason for the atrophic fibers, no physical activity, no treatment, and no real plan.

Dr. PCP said, “I want to call House and say ‘I know you’re not a real doctor but I need help here.” If only there was somebody, anybody out there she could call who would take an interest in getting me treatment.

I also got blood drawn for globulin, the only blood test not yet explored though I imagine that sub specialists have the larger repertoire needed for a puzzle like me.

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What do mobile phones and armed robbery have in common?

Posted on November 9, 2009 by queenofoptimism

For the average person, I am certain that mobile phone shopping is also time consuming.  So many choices and with the prices and features, they’ve become a major purchase.

When I shop for a phone, I need to make sure I will be able to hear the

verizon-guy

As a matter of fact, I can't hear you now. Or later.

other person on the phone.

There are hearing aid compatibility ratings but they mean nothing for me.  I have the economy hearing aids ($2,100/each) that don’t have switch or volume adjustment capabilities.  For me, I need to see if the ear piece of my aid is a good match for the speaker location on the phone.  Sometimes the shape of where the speaker is occludes my aid and I can’t hear a thing.  And, as popular as texting and email on smartphones have become, I do occasionally need to talk to someone.

So, this weekend, you could have found me in any of the major mobile phone carrier stores placing calls from sample phones to my husband.  So many calls that my husband continues to receive anonymous calls and texts from other phone testers who click spontaneously and dial or message the last number called.  Overall, it was challenging to really get a good feel for the best hearing match given the testing situation of a busy store.  However, there were some immediate no-ways.

I made a phone selection based on what I felt would be most helpful to me in managing my work, parent volunteer, and social activities.  I selected the HTC Touch Pro2.  It’s a really awesome phone.  You can use Excel and Word right on your handheld and the browser choices blow my 3 year old Blackberry browser away.  After a couple of hours familiarizing myself with my phone and customizing it for my needs, I needed to make a quick run to the Pharmacy.  From our driveway, I called my husband to test out my phone’s original purpose capability. My heart sank.  I could hardly hear him and no matter how strongly I wished for it to be different, it is what it is.  It’s going back tomorrow.

I wasn’t prepared for how quickly strong emotions overcame me.  It sucks.  I don’t want to be limited by my deafness.  Even when it’s something as superficial as a phone – I want equal physical access as everyone else.

I definitely wasn’t prepared for what happened next.  As I walked out of the Pharmacy, I was approached by a man, “Hey!”  He ran toward me and I ran away in my version of running – a faster limping walk.  I have no idea what he wanted but I do know that 12 years ago, I was robbed with a gun outside of a Pharmacy. No matter how much I put it out of my mind, my mind remembers and can’t let me forget.  It is was it is.

An emotional day that is wearing out my already fatigued body.  Hopefully I can tap into the general strength of my emotions to the benefit of my novel.  I’m much further behind than I want to be.  Nevertheless, none of my characters are deaf, chronically ill, or have ever been robbed with a gun.  And, it’s staying that way.

Thank you for reading and best wishes for a wonderful day.  Comments are encouraged.

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For Pete’s sake and Art’s sake

Posted on November 1, 2009 by queenofoptimism

amask

For now, I’m doing my best to stay flu-free.  Well, I take that back.  If I was doing my best, I’d probably be isolated but I am carrying around cleansing wipes and have received my regular flu shot.

Nearly two weeks post-op, my left ear still has pain.  I’ve got a few more days on the super antibiotic drops that do help with pain, so we’ll see how it goes.

As far as my other problems, I still have reduced left foot dorsiflexion that worsens with activity.  At times, I have joint pain in my fingers/hands and find it hard to do tasks that require strength and accuracy in those areas.

I reflect back the changes that have occurred over the past year.  It was nearly a year ago that I found out my thyroid had again grown sluggish and I began receiving treatment for hypothyroidism.   Like the old adage, I’ve taken some steps forward, and some back.  I am counting on moving forward with the help of my PCP and ENT who will work together to find the right person to address my atrophy and limited dorsiflexion.  I’m also counting on them to look into the globulin problem I had as a child that was never addressed.  Perhaps there’s a connection.  If it wasn’t for this blog, I may never have given that a second thought.  Writing here helps me reflect and recall.

This month, I am doing something for me. For my personal growth and development.

The month of November offers a plethora of group writing projects.  From 30 days of daily blog posting to playwriting.  I chose to participate in the original – NaNoWriMo.

The goal of NaNoWriMo is to write a 175-page (50,000-word) novel by midnight, nano_09_blk_participant_100x100_1.pngNovember 30.  I could list at least a few dozen reasons why it is ridiculous for me to attempt this task.  I’ve known about NaNoWriMo for about four or five years and it was only this year that I even considered it.  I’ve challenged my husband, who is an artist, to join me.  He has signed up, too.

I’m not one for fiction.  It’s odd, mostly.  I mean, it’s odd that I have no interest in fiction. I have trouble wrapping my mind around fantasy.  The grossly improbable.  The far-out.  It’s just not me.

So what in the world would make me interested in writing a novel?

The challenge.  Writing a novel is so far from who I am.  I don’t make stuff.  I’m not creative.  I’m no artist.  Hell, I make my living doing technical writing.  In other words, I get paid to follow directions.   I have no aspirations of writing the Great American Novel.  I’m doing art for art’s sake.  Something I have never done before.

The idea of doing art for art’s sake that does not require me to walk into an art supply store sold me.

As provided by Chris Baty, the founder of National Novel Writing Month:

“Art for art’s sake does wonderful things to you. It makes you laugh. It makes you cry. It makes you want to take naps and go places wearing funny pants. Doing something just for the hell of it is a wonderful antidote to all the chores and “must-dos” of daily life. Writing a novel in a month is both exhilarating and stupid, and we would all do well to invite a little more spontaneous stupidity into our lives.”

Yes!

I wish for you that you find an antidote to the must-dos of your life.

I’m always very interested in what you have to say.  Please comment.

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X marks the spot

Posted on October 20, 2009 by queenofoptimism

My surgery today was much better than I expected.

My ear - marked with an X to make sure no one screwed up.

My ear - marked with an X to make sure no one screwed up.

I’m feeling pretty well and there have been no complications that I can tell.   Three years ago, with the same surgery, I was in very rough shape.   Best of all, Dr. ENT was very kind to me.  Pre-operatively, she let me know that she and Dr. PCP had a rather lengthy conversation about me yesterday, “And we’re going to  work on getting you better.”

I was touched by her statement and wonder if that is why I woke from anesthesia with burning tearful eyes.  I wonder what I said to her once the anesthesia kicked in.  Dr. ENT did tell my husband that she told me everything she told him once the procedure was done but didn’t think I’d remember because of the amnesia effect of anesthesia.  She’s right.  If I was that emotional, hopefully she is not reconsidering her stance that I am not crazy.

If you haven’t had surgery in the past two years or so, you may not know that you are now written on with a marker to make sure the surgery is done on the correct body part.  Please see photo above for an example.  Since all of my problems are predominately on my left side, I am considering tattooing the entire left side of my body.

Next steps

My next steps are to put the pressure on Dr. PCP and Dr. ENT about what to do next.  they both believe I have an autoimmune disease component to my myopathy, ears, etc.  Who do I see about this.  I asked the practice manager at my PCP about hiring Dr. PCP to coordinate my care.  The manager stated that Dr. PCP feels she can do this during regular practice hours and visits without me contracting with her for additional services.  We’ll see how things go.  I’m willing to make arrangements so that she can spend dedicated time working on my particular case.  It’s been a year since I began struggling more than ever before.  It’s time to move this process along.

UPDATE: A few minutes after I published this, I fell.  This is the third time I have fallen in two weeks.  I had gone a few months without falling.  I know one aspect of what makes me fall.  I can not flex my left foot so it drags on the ground.  Sometimes, the foot interferes with my pant leg or shoe making me unsteady or tripping me.  ugh.

Thank you for reading!  Yes, indeed, your comments are encouraged.

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If you can’t beat them, join them

Posted on October 20, 2009 by queenofoptimism

Wouldn't this be nice? Two doctors happily, intently discussing you?

Wouldn't this be nice? Two doctors happily, intently discussing you?

My ENT and PCP have joined forces for the good of me, Patient Q.

Today, they discussed my situation, my MRI results, my myopathy and other problems.  I am having surgery tomorrow.  It will include draining fluid from my middle ear and mastoid as well as tube insertion.  My PCP is confident that the procedure will give me relief.

My PCP also reports that my ENT (despite her occasional amnesia about my history) thinks highly of me and is sympathetic to me and my concerns about my hearing loss.  They both believe I have an autoimmune or endocrinological problem that is contributing to all of my problems including my ears and myopathy.  My PCP is glad to have an ally who does not think of me as crazy and who is shocked to learn that any doc would imply that I am.

So, tomorrow’s surgery…. I have no idea what the expected recovery time is.  I’m looking forward to the expected relief and to following up with my docs for suggestions on how to pursue a possible autoimmune or endocrinology connection.

Wish me luck!

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