Friday, October 28, 2011

My Illness Picture:
Thoughts and Impressions On What It Says About Me

They say a picture is worth a thousand words, so recently I decided to draw my own illness picture.

My first thought after I viewed my completed picture? How I love Kerri from the blog Six Until Me when she says, "Diabetes doesn't define me, but it helps to explain me."

I am not my chronic illnesses. They are not who I am. But I can see the influence they have had on my life for the last 23 years, from my college major, career choice, work history and periods of disability to how I view the world, roll with the punches and want to help other people living with chronic illness too.

My second thought was another quote: she who has all the toys wins. Only it was a more dark version, something along the lines of: she who has all the chronic illnesses... I got stuck trying to figure out what the ... should be, since so far my chronic illnesses haven't killed me, just caused me a lot of problems.

Although if I let myself wax philosophical for a moment, I could probably come up with a bunch of ways chronic illness has spurred my personal growth.

But that got cut short when the real emotional impact of my picture started to hit me.

First I connected with sadness, grief and loss that hangs on the borders, out of view, around my picture. Then I felt a sense of amazement when I considered all the things I have been able to accomplish in spite of all these illnesses on my plate. Finally, as I started cataloging in my mind all the things my health care team and I are doing to manage many of the illnesses that make up my picture, I felt a renewed sense of hope that maybe, one day, some could be erased or shrunk to a more manageable size.

After all, I beat the blood cancer leukemia 23 years ago despite only having a 33% chance of survival after my diagnosis.

With so many illnesses to deal with, there has to be some smart researcher or healthcare provider out there who is going to discover a life-changing treatment for at least one of my chronic conditions.

Then I thought about all my chronic friends, the ones that I have made because our chronic illnesses have brought us together. Like me, many of them deal with multiple health challenges too. Now I am sure some of them will look at my picture and say to themselves, "Boy, am I glad I'm not her!" while others will say, "Heck, that's nothing compared to what I'm dealing with."

Whatever your reaction to my picture, that's okay with me because it isn't about comparing myself to others. It's about a new way of telling my story that I am exploring. Overall, I am both surprised and humbled by the impact my illness picture is having on me. I also feel strongly that it is something I need to share with my healthcare providers, to help them see my illnesses and the connections between them in a whole new way. That said, there are probably more lines that need to be drawn between the different illnesses, but if I included all of those lines I'm afraid my picture would become a huge, jumbled mess!

I also wonder if sharing this picture with my family and friends would help them gain a new perspective and a new understanding about my health and resulting "chronic" lifestyle.

I think in many ways I have only begun to scratch the surface. I think this picture may hold more insights and lessons for me. So I am affixing it to the back of the door to my armoire--all I have to do is open the door whenever I want to view it and ponder it some more.

If you are inspired by my example, let me suggest that you undertake this project only when you feel you are in a good place with your chronic illnesses. I admit I underestimated the impact viewing my picture would have on me. I think that if I had been in a place where I was struggling with my illness self-management I've might not have been able to manage the strong feelings evoked by this activity.

The immediate benefit to completing my picture has been feeling stronger and more confident about my ability to take on my chronic illnesses, manage their symptoms and not let them define who I am. I mean, look at my plate! I am dealing with all these health issues and living my best life despite them.

Like all my chronic friends, I am quite an extraordinary person.

Can you imagine what I would be able to do if I could cross a few of these challenges off my list?

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Thursday, October 27, 2011

Mission 2011:
How I Make Social Media Work for Me

Perhaps the biggest hurdle to getting started with social media is figuring out how each platform works.

Obviously you need to sign up for an account--which sometimes can be a little complicated.  Then you need to figure out how you want to present yourself online.  Next you need to figure out how to find people to connect to and how exactly you go about having "comversations" with them.

Creating A Social Media Presence

One of the first decision you face is if you will use your real name or a pseudonym (like many in the chronic illness community do.)

I decided to use my first name on my blog, my blog's Facebook page and on Twitter.  With a pretty unique name like Selena, I don't really have to compete with others to use my real name.  If you have a more common name, you might find yourself trying to figure out how to make it different from the other Lauries, Marys or Sarahs out there.

I also decided to use a real picture of myself as my avatar.  I chose to do this so that people could see the real me in the hopes that this might help them develop a connection to me.

Connecting to Others

I found my chronic illness community by searching keywords like fibromyalgia, chronic illness, chronic pain and chronic fatigue.  I've also discovered my peers by searching the nicknames they call themselves, like: spoonies, sick chicks, fibromites, chronically awesome and ChronicBabes.

Once I identified a few people to friend or follow, I looked at their friends/followers lists for ideas about who else I might want to interact with.

Luckily for you, if you want to try Twitter, I can make connecting to others there a little bit easier.  I have put all my friends with chronic illness on Twitter into a public list called My Chronic Friends.  I think they are a great group of people and encourage you to follow and interact with them too.

Communicating with Others

To be honest, I just sort of dove in, joining groups and then inserting myself into conversations. Using this tactic, I sometimes got positive results and sometimes got mixed results.

In retrospect, I could have spent more time "listening" to conversations to see how they unfolded to get the hang of things.

What threw me off initially was not always getting a response when I put myself out there.  I learned over time that not all my attempts at communicating will elicit a response from others.  As my social connections grew, I knew others were reading my tweets and posts even if they didn't always respond to them.  Somehow knowing this has become a social connection in and of itself.

Here are some of the ways that I connect with others:

  • Contributing to a conversation on a Facebook wall or in a Facebook group
  • Having a conversation via Facebook messages 
  • Sharing a link, photo or video with others on Facebook
  • Hitting the "Like" button on a Facebook page or status message
  • Reading and commenting on a blog posts 
  • Writing a blog post in support of an awareness day or illness-related event
  • Hosting and participating in blog carnivals
  • Using Twitter to have any time, anywhere conversation with others
  • Participating in Twitter chats, like the weekly #spoonieparty

Building Relationships

Through social media I have learned a lot about other people just by reading their tweets, comments, posts, etc.  In many respects, my interactions online are very much like having a whole bunch of digital pen pals.

I learn bits and pieces about them with every shared communication.  And just like a puzzle, those bits and pieces come together and a fuller picture of each person emerges over time.   

Always Available

The absolute best thing about social media is that people from around the world are always there participating in conversations--all day and all night.  So when it is 5 am and I can't sleep because of pain or insomia (or painsomia), I can always find someone on Twitter who is awake and wanting to chat.

I also love how well social media works with my chronic lifestyle. Social media is always there for me whenever I want it or need it to be.  So when I have the energy and the time, I can connect to other people simply by tweeting, commenting, chatting and posting. 

Final Thoughts

I hope this post has inspired you to try some new ways of connecting with others through social media.  I've also included these links below to some good articles with ideas about how to get started and how others with chronic illness use social media too.

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Wednesday, October 26, 2011

Almost Wordless Wednesday:
My Illness Picture

This illness picture explores the impact illness has had on my life so far. 
Come back Friday when I share some thoughts and impressions on this project.

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Tuesday, October 25, 2011

The Girl Behind All That Lemonade

Dale Carnegie said: "When fate hands you lemons, make lemonade."

Sure, there are a bazillion other versions of this quote.  The most memorable one that comes to my mind at the moment is: "When life gives you lemons, hand them back and ask for chocolate instead."

But let's not kid ourselves here: the lemons life sticks us with are not exchangeable or returnable.  Period.

And we might all get them, but certainly not in any sort of equitable distribution.  Which probably accounts for the mountains of them that have shown up on my doorstep so far in my lifetime.

So what do I do with all those lemons?  I have made lemonade of course: lots and lots of delicious lemonade.

I've learned to cope, adapt and change.  I've learned to smile through my pain and hide my tears when life feels more like a punishment than a blessing. To deal with all those lemons, I've transformed myself into the ultimate super trooper.  Heck I've even adopted the motto "Life is not in having and getting, but in being and becoming." (Matthew Arnold)

This is all fine and dandy, but it also begs the question, 'Who is that girl behind all that lemonade?'  I mean, I don't walk around 24/7/365 with moonbeams sparkling in my eyes, rainbows shooting out of my ears and a glass of lemonade in my hand.  I'm not always smiling and putting a on happy face...and some of those lemons do wind up smashed on the kitchen floor (among other places.)

So let me get real.  Here is a peek behind the lemonade stand at three of the more grittier themes that are also a part of my life.


If I am going to be really honest, one the first things I need to admit is that I feel disappointed.  I'm not living the life of my dreams and that is quite a letdown.

At the moment, I've kind of put dreaming on hold because it brings me even more disappointment, and who needs that, right?  I'm strictly living life one day at a time, because it sometimes gets too overwhelming to think about life with chronic illness in bigger chunks that that.

Sure, life disappoints all of us on some level.  But my main concern is that I am not going to be the one things I always wanted to be--a mom.  Between infertility and chronic illness, life really has made this next to impossible (despite all the spam comments to the contrary every time I write about this painful subject.)

I'm at the point where disappointment is turning into regret...


When you have a lot of bad things happen to you, you can't help but feel the loss, disappointment and unfairness of it all.  It hurts like crazy!  And who wants to have to feel like that, right?

Sure, you can ignore it, distract yourself from it, even try to deny it.  But sooner or later it catches up to you.  Then you must decide if you will allow it to take you down into a black, bottomless abyss or chose to face it, feel it and figure out a way to keep living your life anyway.

When I say I am sad, what I am really feeling is sorrow.  Sorrow is a feeling of deep distress caused by loss, disappointment, or misfortune.  Sorrow has become part of who I am fundamentally.  It's all those scars while I've been living my life anyway.

By the way, just because sorrow is a part of my life doesn't mean I don't also feel joy too. In fact, philosophically speaking, one might say that to experience true joy one must also experience sorrow.  Either way, being sad is not the same as being clinically depressed, which by definition means you can't feel joy.

So don't send me referrals to shrinks or leave me recommendations for antidepressant medications.  Well, at least not yet... 


I haven't worked in seven years and, wow, that is a really long time.  Boy do I miss it too.

When I was working I felt like I was on a path filled with accomplishments.  I had a career mission, complete with all kinds of objectives and goals.  I was getting things done every day, week, month and year and I had something that was tangible proof of it too: my resume. 

In the last seven years I really don't feel like I have accomplished much.  Sure, I have been taking care of myself day in and day out.  I've developed some expertise in the self-help techniques I use to do just that too.  But it's been an exercise in repeating the same goals and objectives over and over again.  Sounds pretty boring to me.  Plus I'd be hard pressed to create a resume with that kind of experience.

Most of all, I feel like I am floundering.  Or maybe it's more accurate to say I currently feel like I'm squandering my time here on Earth.  I mean, I believe that we all have some kind of purpose here and I am definitely feeling like my mission has run into some serious health-related roadblocks that are preventing me from fulfilling mine, whatever exactly that is.

Which leads me to my next point--I'm not sure what my purpose is anymore.  Or perhaps I just haven't been able to figure it out because I have been so darn busy just trying to take care of myself.  Talk about the daily grind...

Some Final Thoughts

Another truth is that I have been living with serious illness and its aftermath since 1988.  That's 23 years.  That's a lot of time...

Some of this time was spent sitting in therapists' offices talking (and talking and talking) about all the crap that has happened to me.  I've had a lot of time to process these issues.  Along the way I have been in denial, angry, freaked out, livid, heartbroken, anxiety-ridden, enraged, devastated and, yes, even clinically depressed. 

Yes, I've had a lot of time to get down to the root of what bothers me the most and I think that disappointment, sadness and feeling unfulfilled pretty much sum it up.  They also, ironically, are the things that motivate me to keep moving on.  I haven't given up yet on creating a life that resembles some of my reality-tempered aspirations, contains a balance of joys and sorrows and helps me discover my true purpose and ways to fulfill it. 

Funny how life works, isn't it?

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Monday, October 24, 2011

Question of the Week:
Up All NIght?

Insomnia has never been my thing. I have always been the girl who gets plenty of sleep at night. Even back in college, if I was up all night, I made up for it by sleeping in the next day. And after my early 20s there was no way I could stay up all night.

Before my trip-and-fall, before the fibromyalgia diagnosis, before my life with chronic illness, every once in awhile I'd have problems sleeping at night. Now it's become an almost a daily occurrence.

At first I tried all the things you're supposed to do when you have problems falling asleep.

I kept a regular bedtime routine, including going to bed at the same time each night. If I couldn't fall asleep right away, I meditated or counted sheep. I didn't get too upset if I couldn't fall asleep. I was patient and waited until I got sleepy. That meant sometimes turning the light back on and reading a book until I felt more sleepy.

Then turning the light back on became the norm.

Now I know, whatever I do, falling asleep at a "decent" hour just isn't in the cards for me. I've given up fighting to fall asleep on a "normal" schedule.  My life is ruled by an altered sleep schedule, my delayed phase sleep disorder.

Every night I'm able to fall asleep before 6 a.m. I consider myself lucky.

I've tried sleeping pills. When I took Lunesta on a regular basis I wound up with horrible rebound insomnia. I tried antidepressants to help me sleep better, but I haven't had such great luck with those kind of medications.  My last attempt was using an anti-psychotic medication, Seroquel, which was prescribed off-label for me.  I stopped it a few months back because it was contributing to poor control of my type 2 diabetes.

I had a sleep study done and was diagnosed with sleep apnea. I religiously use an auto CPAP machine which is effectively managing this disorder.  I wish I could tell you that I am getting better sleep and have more energy, but I do not. (In case you were wondering, I did not snore or have other tell-tale signs of sleep apnea.)

It is interesting to note that I suffered similar shifts in my sleep pattern in 1988 when I was being treated for the blood cancer leukemia and in 1995 when I injured by back and spent three months on temporary disability because of the pain.  Apparently there is something to physical illnesses causing sleep disorders.

So how many of you are up all night like me?  Better yet, what have you discovered that has helped you battle sleep disorders?  Please share that valuable information with me here and everyone else over on the Oh My Aches and Pains! Facebook page.

To sleep

A flock of sheep that leisurely pass by,
One after one; the sound of rain and bees
Murmuring; the fall or rivers, winds and seas,
Smooth fields, white sheets of water, and pure sky;
I have thought of all by turns, and yet do lie,
Sleepless! And soon the small birds' melodies
Must hear, first uttered from my orchard trees;
And the first cuckoo's melancholy cry.
Even thus last night, and two nights more, I lay,
And could not win thee, Sleep! By any stealth:
Soon do not let me where tonight away:
Without Thee what is all the morning's wealth?
Come, blessed barrier between day and day,
Dear mother of fresh thoughts and joyous health!

~William Wordsworth

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Thursday, October 20, 2011

Mission 2011: Finding Social Support Through Social Media

photo by crirez

My Life Resembles a Commercial 

Have you seen that commercial on TV with the young woman who is trying to get her parents connected on Facebook?  She comments that they only have 19 friends there; meanwhile her parents out mountain biking with their friends.  She, on the other hand, has 687 friends on Facebook and is sitting at home in front of her computer.

I got a chuckle watching that commercial.

Then I went to lunch with a very good friend of mine.  She has been diagnosed with a pretty awful illness, Lymphangioleiomyomatosis (LAM), that one day will limit her ability to do things.  So when I told her how I use social media to connect to other people, she told me she is trying to be like those parents.  She wants to get out there and experience as much of life as she can before her life resembles, well, mine.

We both got a chuckle out of her comment.

My Social Reality

I can't be mad at her for pointing out the obvious.  She is blessed because right now her illness isn't making her mostly housebound and unable to work.  She doesn't spend much time on social media sites because she is busy with real life.

If I was in her position, I wouldn't be spending much time with social media either.

The truth of my current situation is that I spend a lot of my time alone.  I have a very limited ability to participate in social activities because of chronic and persistent pain and fatigue. When I can participate, it takes extensive planning on my part, as well as a lot of assistance from my family and friends to make it happen.

Even then, there is always the chance that I might have to cancel at the last minute because my body won't cooperate.

To be honest, I don't see a lot of my real life, in-person friends very often because my very specific requirements for getting together don't mesh with their lifestyles.  That's just the way it is. 

From Real Life Disappointment...

I guess I knew this was going to happen, which is why when I first was diagnosed with fibromyalgia and chronic pain I made a huge effort to find a weekly in-person support group.  I had such a positive experience with the weekly young adult cancer support group I participated in from 1988 to 1992.  I wanted that same kind of experience again as I began to face a life with chronic illness.

So I searched high and low...and came up empty handed.  

The closest I got was a monthly support group, which I tried for a while. With chronic illness making life pretty unpredictable for myself and others, the group was not well attended.  People came and went, often before I was able to get their contact information so we could stay in touch.  Then when I lost my transportation assistance, which was key to my regular attendance, I stopped going too.

...To Online Friendships

Eventually, I turned to the Internet.  It was actually one of my real life friends who pushed me in the direction of blogging, Twitter and Facebook.  (She is now one of those real life friends I hardly see anymore--yes, that is ironic, isn't it?)

From that initial exposure, I went on to discover websites and blogs that included community building tools like forums and chats that took meeting people and getting support to a whole new level.  Through my blogging, I discovered blog carnivals where I met other bloggers and worked collaboratively with them around issues and themes of mutual interest.

Flash forward to today and I thank the Universe every day that websites like Facebook, Blogger and Twitter exist.

Without them, I would be really lonely...

I have more to say on the topic of social support and social media, so please come back and join me next Thursday when I plan to continue this discussion.

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Wednesday, October 19, 2011

Worldess Wednesday: Dizzy

feelin' blurred by barbye

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Tuesday, October 18, 2011

Some Good Advice Deserves to Be Repeated Twice

Keep the Doctor Away by elvinstar
Yesterday I told you about my rough time last week.  In my eagerness to tell the whole story, I included a bit of advice that, in retrospect, might have gotten buried amidst all the other details.  I'm going to rectify that right now by repeating this good advice.

Words of Wisdom

Several years ago, I met with a pain specialist who came highly recommended.  While under his care, I got injured.  My rusting shower bench broke while I was sitting on it and I fell in the shower.  I just so happened to have a follow-up appointment with him the next day, and at that appointment he made a point of closely examining me to make sure that a) I hadn't hurt myself and b) those new injuries weren't being masked by my pre-existing chronic pain.

During that visit, he told me, "You have to be careful when you injure yourself, because your chronic pain can mask trauma from injuries."

For the moment, let's focus on that advice and not on the fact that that doctor eventually decided to stop seeing me because he came to believe he didn't have any treatments to offer me.

Pain Isn't All That Straightforward

The truth is that the perception of pain is not all that straightforward.  Sometimes when we get physically hurt, we don't feel anything.  Sometimes when we aren't physically hurt, we feel tremendous amounts of pain.  To read more about this phenomenon, I suggest checking out the Seven Things You Should Know About Pain Science.

My best guess is that when I hit my head last week, I did a couple of things that made my brain think my new head injury pain wasn't such a big deal:
  1. I rubbed my head where I hit it in an attempt to make the pain "go away", which it did after a few minutes.
  2. I resumed decorating the house, which was definitely quite a workout for me.
  3. By resuming the decorating process, I distracted myself from my head injury pain.
I can't say with 100% certainty that these actions led to my brain downgrading my head injury pain, but I believe they all played a role in my brain delaying the development of a significant pain response.

Let me also say that this isn't the first time something like this has happened to me since I started living with chronic pain.

What Hurts Isn't Always Where the Problem Is

A few years back I fell stepping down out of the storage room behind our garage.  Immediately afterwards, I was in a tremendous amount of pain around my left ankle and had to have Robert help me back into the house.  I tried icing my foot and ankle to see if the pain was from a sprain.  After about an hour, when the pain had not reduced significantly, I headed to the Emergency Room (ER).

I told the doctor that my ankle hurt.  He examined it and ordered an x-ray of my ankle.  When he didn't see an ankle fracture, he was ready to release me in an ankle brace.  Thank goodness a radiologist also reviewed the x-ray film, because he is the one that found the fracture in my foot, which lead to the doctor completely changing his discharge plan.

Sometimes It Doesn't Hurt At All

My final example is my recent urinary tract infection (UTI) at the end of September.

If you have ever had a UTI, you know how painful they can be.  Only this last one I had caused me no pain whatsoever.  It came to my attention when I had a day of sky-rocketing and then plummeting blood sugar readings that left me feeling sick, nauseous, dizzy and completely wiped out.

This story also involves yet another trip to the ER, where the doctor ordered a urinalysis and then IV antibiotics to start treating the infection right away.  I was both amazed and puzzled when during the infusion my nausea and dizziness disappeared and was replaced with the characteristic urinary pain that is the hallmark of a UTI.  That left me wondering why my body hadn't alerted me to the infection until that moment.

In hindsight, my only guess is that the UTI developed while I was taking 10 days of antibiotics to treat an infection in one of my stitches from my carpal tunnel surgery.  Somehow being on antibiotics convinced my brain that this additional infection was being taken care of.

What This Means For You

So back to the good advice from that pain expert I saw (you know, the one who decided that he couldn't help me...)

You have to be careful when you live with chronic pain, because chronic pain can mask symptoms of other health problems.

Which means:
  1. You'll need to remember this when you hurt yourself or something unusual happens.
  2. You'll need to educate your doctors about this fact, as they probably will be aware of it themselves.
  3. You'll need to learn to be a detective in order to decipher the mixed messages your body will give you from time to time.
  4. You'll need to be a strong advocate for yourself when faced with medical practitioners who discount your symptoms when they can't figure out what is wrong with you.
  5. You'll need to be more proactive about taking preventative measures so that you don't injure yourself or get frequent infections on top of your chronic pain.

The informational content of this article is intended
to convey general educational information
and should not be relied upon as a substitute
for professional healthcare advice.

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Monday, October 17, 2011

Question of the Week:
Getting Mixed Signals?

by asifthebes
Last week was a really rough week for me.

It began innocently enough.  I put up outdoor Halloween decorations last Sunday with copious amounts of help from Robert.

In the process, I hit my head really hard on our mailbox while getting up after plugging in a light string into a power strip on the front porch.  I spent several minutes cursing and swearing, rubbing my head and half expecting blood to start trickling down my face.

After a few minutes, the pain subsided and I got back to decorating.

The next day, I felt fine.

But then Tuesday rolled around and I started to feel horrible.  After being up for about an hour--and trying to get a bunch of things done before my second carpal tunnel surgery scheduled for the next day--I started getting really dizzy and nauseous.  The more I moved, the more nauseous and dizzy I got.  After a couple of hours of these symptoms getting worse, I started getting worried.

Then I remembered that I hit my head.

'Dang, do I have a concussion?' I thought to myself.  Then I remembered what a pain specialist told me,"You have to be careful when you injure yourself, because your chronic pain can mask trauma from injuries."

'This is just great!  And I have surgery scheduled for tomorrow.'

Of course, by now it is late afternoon, too late to get a same day appointment at my primary care doctor's office.  So I call the local Urgent Care, but after I explain my circumstances, they recommend I go to the Emergency Room in case I need a CT scan.

So I wait for Robert to get home from work to take me, because by now I am too dizzy and my stomach too upset for me to get there myself.  After what seems like an eternity, he finally gets home.  We head over to the ER.  I tell the medical professionals how I hit my head, how I don't really have any pain, just really severe nausea and dizziness.  The doctors say my neurological exam is normal, decide against the head CT scan, say my symptoms are normal for someone who has recently hit their head and send me home with a prescription for some anti-nausea medicine.

Oh, and they think there will be no problem with me having surgery tomorrow.

They diagnose me with a head injury and think surgery in 12 hours would be a good idea?!? That makes me wonder if they know what they are talking about...

So I go to the pharmacy, get the medicine, take it and it doesn't really help.  I go to bed and as I lay down and close my eyes, the room starts spinning furiously.  Between the queasiness and wooziness I can't sleep.  Fifteen minutes before the alarm is supposed to go off, I decide that I am canceling my surgery, even if the ER doctors think having surgery three days after hitting my head is a good idea.

When I talk to the nurse in the surgery center letting her know why I am canceling my surgery at the last minute, she agrees with me that postponing it is a good idea.

The nausea and dizziness lasted until Friday morning.  Then it turned into the most g-d awful pain flare-up.  The whole left side of my torso, from my neck and shoulder, down my spine to my tailbone, hurt viciously and horribly. I spent the entire weekend writhing in pain, taking pain medicine, glued to a heating pad and distracting myself.  It is only just now, on Monday morning, that I feel like the pain might be relenting just a wee bit.

So not only did I get some pretty mixed messages from the healthcare professionals I interacted with this last week, it seems my body was having some big issues accurately communicating to me what exactly was going on.

Can you relate?  Ever gotten mixed messages from your healthcare providers?  Or has your body acted strangely and left your scratching your head trying to figure out what is really wrong?   

Let me know about the mixed signals you've had to deal with by leaving a comment here or heading over to the Oh My Aches and Pains! Facebook page.

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Wednesday, October 12, 2011

Almost Wordless Wednesday:
One Minute Meditation

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Tuesday, October 11, 2011

An Easier Way to Take Your Medicine

by LittleMan
Taking medications can be a big part of managing your chronic illnesses.  In fact, for some illnesses, medications are the only treatment option.

In addition, many of us are very sensitive when it comes to medications.  Starting off with a regular dose of any drug can mean big side effects and little benefit.

That's why I have several pill cutters in my home, so I can "start low and go slow," gradually increasing the dosage of any medication I am given to try. But let's face it...cutting a pill into fourths or eighths is really hard to do.  Plus there are some medications that should not be cut--especially those that are long-acting and specially-coated to dissolve slowly.

That's where your pharmacist comes in, only not the one at your local chain drug store.  You need to find yourself a compounding pharmacist.

What Is Compounding?

In the old days, every pharmacist was a compounding pharmacist.  They took the medication you needed and created the prescription your doctor wrote, tailoring it to your specific needs.

Today, it might be much harder to find a compounding pharmacist, but it's not impossible.  Plus the benefits of compounding make looking for a compounding pharmacist worth the effort:

  • They can make medications in almost any dosage strength
  • They can turn a pill into a liquid or transdermal gel for people who can't swallow pills
  • They can create allergen-free medication, such as ones without gluten or colored dyes
  • They can add flavor to liquid drugs, usually so that medications are more palatable

While the days of filling a specialized prescription might be over, you can see that compounding remains a good choice for those of us who need a better medication solution than what comes out of a pill bottle.

My Recent Compounding Experience

I recently asked to be prescribed the diabetes medication metformin.

Now I have tried this medication before in 500 mg pill form and immediately had side-effects to it; severe nausea prompted me to stop taking it.  Since my last encounter with metformin, I've done some research and discovered that it might help decrease my Hepatitis C viral load (which at last check was 24,000.000.) That made metformin looked like a good two-for-one choice to treat my diabetes and control my chronic Hepatitis C infection.

Desperately wanting this to work for me, I convinced my doctor to write a prescription for a compounded metformin liquid.  She agreed, instructing my compounding pharmacist to create a 20mg per ml metformin liquid solution using the immediate release tablets.  (The extended release XR or ER could not be used.)  My instructions were to start at a very low dose, 50 mg twice and day, and work my way up to 500 mg twice a day.

I am happy to report that not only have I achieve this goal over a span of eight weeks, I am now taking the 500mg metformin pills twice a day with no severe side effects.  My diabetes is under much better control and I am very curious to see what my next Hep C viral load count reveals.

Could Compounding Help You Too?

Only your doctor and pharmacist can determine if this is right for you.  But it does help to understand what compounding is and educate your doctor about this option if they are unfamiliar with it.  It also helps to talk to a compounding pharmacist to see if your medications can be compounded.

October is American Pharmacists Month

The informational content of this article is intended
to convey general educational information 
and should not be relied upon as a substitute 
for professional healthcare advice.

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Monday, October 10, 2011

Question of the Week:
Dealing with Disappointment?

When I'm feeling down by inspira
Life is full of disappointments: the date who didn't call, the job we didn't get, the perfect apartment that just got rented to someone else.  Sooner or later, we all learn to cope with these setbacks and heartbreaks in life.  We pick ourselves up, dust ourselves off and keep moving forward like everyone else does.

But what do you do when your biggest disappointment in life is your chronic illness?

Clearly this is something you can't just brush off and hope to move on to something more pleasant.  Plus being chronically ill doesn't just disappoint you; it often results in the people around you feeling disappointed too.  Chronic illnesses can consistently prevent us from fulfilling our expectations and wishes, not to mention the expectations and wishes of those around us!

I got a reminder of this Friday night.  Robert and I got into a fight about doing the dishes, only it had nothing to do with the dishes.  It was yet another catalyst for Robert getting in touch with his feelings about his disappointments with me.

You see, if I was healthy and not working, it would be reasonable for me to take charge of the household and be a domestic goddess.  I'd be cooking, cleaning and running errands while he was at work.  It would be a fair and equitable split of the housework responsibilities.

Instead I am home all day and not able to get much done.

I know he is often tired when he gets home from work and the last thing he wants to do is chores around the house.  I'm doing the best I can to get as much done as possible, but that pales in comparison to what I used to be able to do.  The ideal solution here is to hire help, but with me not being able to work and my disability income just a small fraction of what I used to make, it isn't a affordable solution right now.

So we had a fight about the dishes piled up in the sink--which was really about my inability to meet his expectations being that I am home all day with plenty of time on my hands.  It's too bad too.  I'd really like to use my hands and the rest of my achy body to get things done, but that is besides the point.

He needs to figure out how to come to an acceptance of my circumstances, which for him has been a long and slow process.  Long and slow because he doesn't walk in my shoes.  Long and slow because he sees a wife that doesn't really look sick on the outside. It's a big change for him, there is no denying it. As much as I hate fighting, I see how it serves a purpose and moves his process along.

In some respects, being the sick one seems to make it easier to accept the changes.  Although I still often feel this way:
"Inside every sick person is a well person wondering what the hell happened."

In the end, the dishes got done.  After a few hours, things cooled off and we moved on.  The weekend ended on a pleasant note with us having some fun putting up our outdoor Halloween decorations.

I don't know if I really have the answer to dealing with the disappointments resulting from a life with chronic illness.  I personally have taken the "grin and bear it" approach.  When it comes to the other people in my life, I find myself reminding them, "This is the way things are.  I'm sorry and I am doing the best I can given the situation."

So what do you think?  How do you deal with disappointment, both your own and that of the people around you? Do you think disappointment is just a part of living with chronic illness or is it a pit-stop on the way to acceptance?

Leave me a comment here or over at the Oh My Aches and Pains! Facebook page so we can discuss this topic further.

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Saturday, October 8, 2011

Where Was Selena This Week?
She's Been Busy, Busy, Busy!

My apologies for being scarce here this week.

I've been working on getting several things done in preparation for my second round of carpal tunnel surgery this upcoming Wednesday, October 12th.

Plus since my right hand is pretty well healed, I took this window of opportunity to get some writing projects done over at ChronicBabe and The Fight Like a Girl Club...

-->Check out the latest edition of the ChronicBabe blog carnival which answers the question If you could receive one gift to help you through this life with illness, what would it be? 

I had some fun with this carnival too!  I took this question to Twitter and Facebook last weekend to poll ChronicBabes there for their answers.  It resulted in this post too over at ChronicBabe.

-->Check out my latest post at The Fight Like a Girl Club, where I announce my new role as the coordinator for Member Spotlight posts. I'd love to give each and everyone of my blog readers a turn at being in the Member Spotlight too!  Just head over to The Fight Like a Girl Club and become a member like me.

You'll pardon me too if I don't post much during this next week as well.  As much as I am trying to get a lot of things done, inevitably something will slip through the cracks.  Just reminding myself that I need to allow myself a lot more time to accomplish tasks makes me realize that something is going to get left undone...

Oh well.  Such is the life of a sick chick.

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    Wednesday, October 5, 2011

    Wordess Wednesday:
    A Colorful Neck Support

    With my right hand recovering nicely from carpal tunnel surgery,
    I was able to make this neck support pillow today.

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    Tuesday, October 4, 2011

    Question of the Week:
    Confounded by Complications?

    One thing I have learned over the past seven years living with fibromyalgia and other assorted chronic and disabling illnesses: nothing ever goes as planned.

    Take my recent carpal tunnel surgery. 

    I did OK until a few days before my stitches were to come out.  Then I got a skin infection.  So I called the surgeon's office and proceeded as instructed to the Emergency Room, where I got the stitches taken out and received a prescription for 10 days of antibiotics. 

    Not a huge big deal, not so out of the ordinary and not totally unexpected, as least as far as I was concerned.

    Except 5 days after I finished the antibiotics (last Thursday) I was really not feeling good.  That day my blood sugar was bouncing between 112 and 307--really, really not good.  Then I started feeling really nauseous and really dizzy.  When I couldn't get to sleep because the room was spinning when I laid down and closed my eyes, I knew it was time to return to the Emergency Room, again.


    I felt so poorly that I needed Robert to drive.  And the ride there for me was like Mr. Toad's Wild Ride.  I don't get car sick, but I was so dizzy and nauseated from the motion that I thought I was either going to pass out or vomit all over the front passenger's seat.

    What got me through it was repeating over and over to myself, 'I'll be O.K., I'll be O.K.'

    At 6:30 in the morning there was no wait.  I got put into a room right away.  Then the tests started.  My blood sugar was 266 when I got there.  Then they started a cardiac workup because my pulse was 120 and my blood pressure something like 145/85.  Apparently informing them I had dysautonomia didn't turn any light bulbs on. 

    When they finally got to the blood work and urinalysis, I figured they had a better chance of figuring out what was wrong with me.

    Turns out, I had a urinary tract infection, only I didn't have any of the usual symptoms. Although after that one dose of IV antibiotics, I developed the symptoms and my nausea and dizziness disappeared.  Strange, huh?

    So heading to the ER proved to be a good idea.  But on my way out, they gave me a prescription for the same antibiotic I had been on 5 days before.  I didn't agree with that decision, and when I tried to voice my concerns I was told by the nurse, "The doctor knows you took this a week ago.  It is not a problem for you to take it again."

    Well, I wasn't satisfied with that answer, especially since I suspected I developed this infection while on the previous 10 days of antibiotics.  So I emailed my primary care doctor when I got out of there.  Sure enough, she agreed with me and called in a prescription for a different antibiotic. Which meant another trip to the pharmacy--two in one day.

    Now sure, I am going to be fine.  But what a hassle, right?  Seeing the writing on the wall, I pushed back the carpal tunnel surgery for my left hand another week, just to give my body some more time to heal from all these infections.  After all, there is no sense in tempting fate anymore than I already have.

    Please tell me I am not the only one that this happens to... 

    Share your "confounded by complications" story here or over at the Oh My Aches and Pains! Facebook page.

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