Thursday, October 23, 2014

More Pain Means Less Everything Else

I've been living with more chronic pain lately and it's starting to show.

My mother-in-law called the other day and asked my hubby, "Why hasn't Selena posted on her blog lately?  Is she OK?"  She wanted to talk to me, but I was in the middle of a task, so I asked if I could call her back.

That gave me time to really ponder her question.

The truth is, I've been in a fibro flare-up for over 18 months now.  I know how it started -- being involved in a car accident last year.  Because getting into any kind of accident when you have chronic pain is probably one of THE worst things that can happen to you.

But then I realized the chain of events that has kept my flare-up going since then.  Things like:

  • ongoing dental work, in the form of crowns and root canals, that is causing me more pain. It seems like every 6 months I need another dental procedure! Next up...another root canal.
  • an increase in doctor's appointments, which are using up a lot of my available energy. But I feel the visits are an important part of my "get better" plan.
  • participating physical therapy, which unfortunately is increasing my pain and fatigue in the short run.  I am hoping that if I stick with it, it will be helpful to me in the long run. *fingers-crossed*

And let me not forget my post-accident anxiety about being in a car.  I am really paying attention to how other people are driving now and it is downright scary sometimes. I'm working on being less hyper-vigilant, but in the meantime, a ride in the car can be quite draining.

Here are some of the other things that a severe pain flare-up can do to us:

1) Any increase in severe pain mean you have less of everything else: less energy -- physical, mental and emotional, fewer good days, a decreased ability to leave the house, run errands and go places, and a diminished capability to get things done. 

2) Any time you have an increase in severe pain, you are forced to cut back on all your activities -- physical, mental and emotional.  The longer the duration of your increased pain, the more you cut back.

3) Deconditioning can be the result of a prolonged reduction in physical activity due to an increase in severe pain. Deconditioning is defined as:
...the loss of muscle tone and endurance due to chronic disease, immobility, or loss of function.
Deconditioning becomes another challenge to overcome on your path to recovery from a severe flare-up.

4) Ongoing pain flare-ups increase the other symptoms associated with your particular chronic pain disorder.  For me, this means more fibro fog, more painsomnia (pain-related insomnia), more fatigue and more numbness and tingling in my arms and hands.

So why haven't I been blogging more lately? 

Clearly my increased pain, fatigue and fibro fog all play a significant role.

But it is also my conscious choice to spend more of the energy I do have on the things that have the potential to help me get better in the long run, like treating my dental pain, seeing my pain management doctor and doing my best to participate in a gentle and graded physical therapy program. Because I want to get back to my baseline, to be a 30 out of of 100 again.  I've been more of a 20 for the last 18+ months and frankly, I'm not happy here.  (See the scale I am referring to here. )

I want to get back to container gardening, crafting, gaming and doing more of the things I used to be able to do a regular basis.  That includes achieving my goal to consistently blog and write too.

So while most normal, healthy people might recover from a car accident in 6 to 8 weeks, the simple fact is, for someone like me living with fibromyalgia, it takes more like 60 to 80+ weeks to recover.  It's the proverbial situation of "adding insult to injury."  When you live a life with chronic pain and/or chronic illness, it just takes more time to bounce back from any added severe stress, injury or trauma.

But I will get there, I promise you and I promise myself.  It is just going to take more time, energy and patience. What keeps me motivated?  Looking forward to less pain meaning more living my life.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Friday, June 27, 2014

GRAPHIC: You can live with chronic illness and be...

You can live with chronic illness and be happy
or you can live with chronic illness and be angry.
Either way, you're still going to be living with chronic illness.
(Click on image to enlarge.)

I have been struggling lately with more symptoms than usual.

First I got some nasty stomach virus on Mother's Day that landed me in the ER with uncontrollable vomiting and the need for IV fluids and anti-nausea medications.

Then, a week later, a very nasty pain flare-up began. I've been living with a higher than normal pain level and numbness and tingling in my right hand for the last 5+ weeks.  Yesterday I went for an EMG and nerve conduction study.  Hopefully it will shed some light on whether I have a pinched nerve and where exactly it is being pinched: my elbow, my shoulder or my neck.

Between all the pain and other symptoms, the medications I have been taking to manage my pain and fatigue from being in more pain, I haven't been posting here or on the Oh My Aches and Pains! Facebook page. But I have been thinking about how much I miss regular blogging and what a struggle it has been to get back into a regular posting groove.

But I will do it.  I will get there....eventually.

For today, I offer this graphic I created which illustrates my philosophy for living my life with chronic illness.  This is my secret, my tool for making a real life possible despite chronic illness.

I've been trying to explain this concept to a healthy friend of mine and they're having trouble understanding this.

"You're sick," they say, "so how can you be happy about that?"

"Well, I'm not happy about it, but I don't let it get in the way of being happy about being alive and being happy about the good things in my life."

"But you're sick," they continue.  "Do you really have good things in your life?  Your chronic illness seems to have taken a lot of those good things away...."

"Yes, but I am finding new things to be happy about even though I am sick," I reply.

They scratch their head and look puzzled.  To them, being sick means being unhappy, so they just don't get where I am coming from.  Lucky them for not having to have to understand this!

Perhaps you my readers can leave me a few notes in the comment section below with some alternative ways of explain to someone healthy how it is possible to be sick and happy at the same time.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, May 7, 2014

What's Wrong with Health Care: What It Took to Get My Painkiller Presciption Filled

Pretty please, just fill my prescription...    
Last time, I wrote about my troubles getting my prescription for morphine filled at my regular pharmacy: What's Wrong with Healthcare: Getting a Pain Pill Prescription Filled.  Today I'm back with an update.

They Just Said No

Remember how I couldn't get my morphine prescription filled at my regular pharmacy for over 3 months?  When last I wrote, I had just called another location of my old pharmacy, which was CVS by the way, and they told me they had my pain medication in stock.  I was cautiously optimistic that I was finally getting my medication.  

Well, I went there the next evening and guess what?  They DIDN'T have it!

Fed up, tired and frustrated, I took my prescription to a different chain pharmacy the next day and my prescription filling experience was completely different.

Filling a Painkiller Prescription, Redux

As I walked up to the prescription drop-off counter at this other chain pharmacy, the first thing I noticed was a sign explaining that some narcotic painkiller prescriptions could not be filled the same day because the medications would need to be ordered. 'Fair enough,' I said to myself.

I presented my prescription at the drop-off counter. The staff checked and they didn't have the medication in stock. So they 1) kept my prescription and 2) told me they would order the pain medicine for me. I was informed that the medicine should come in on Wednesday and 3) they would text me (my preference) when my prescription was ready for pick-up.

Since I hadn't used this pharmacy in quite a while, I needed to present my insurance card and my photo ID. "No problem," I told the pharmacy tech. As I waited for my information to be verified in their system, I could see the pharmacist completing the paperwork necessary to order my medication.

Wednesday afternoon rolled around. I hadn't gotten a call, so I decided to call them. I was told it was going to take one more day to get my prescription filled. Annoying, but I could wait one more day.

Sure enough, the next day, I got a text message letting me know my prescription was ready for pick up.

Bye-Bye CVS, Hello Better Customer Service

Despite the wait, this was a huge improvement over how I was being treated at CVS. Interacting with the staff at CVS left me feeling frustrated and like some kind of undeserving, second-class patient. This other pharmacy made me feel welcomed, important and worthy of their time and attention.

So I decided enough is enough, and transfered all my active prescriptions from CVS to this other chain.

On the day my new pharmacy called to get my prescriptions transfered, a pharmacist from CVS called and asked me to call them back. 'Too little, too late,' I thought and I didn't bother calling them.  I also didn't return their call when their corporate customer service department called me a few weeks later in response to the complaint I filed on their website.

The bottom line:  I'm done dealing with CVS, especially when I can get better customer service somewhere else.

The Curious Case of Painkillers "Lost" at CVS

By the way, I did some research and I think I know why CVS wasn't filling my prescription.

It seems there is a U.S. Drug Enforcement Agency (DEA) and California Board of Pharmacy probe into the "alleged loss of painkillers" at four CVS stores in Northern California. According to the L.A. Times, over 37,000 oxycodone hydrocodone combination drug pills, mostly generic Vicodin, went missing from these stores in 2013.  The article also states that earlier this year, CVS corporate told their Southern California stores to get their records in order because they were coming to audit them.

Now my prescription wasn't for oxycodone a hydrocodone combination drug (like Vicodin or Tylenol with codeine), it was for morphine. The key difference between these medications is that morphine is a Schedule II drug and therefore is locked up in a safe, whereas oxycodone hydrocodone combination drugs aren't, which makes it easier for the pharmacy staff to swipe it off the shelf if they are so inclined.

But clearly, all these problems with painkillers at CVS stores seems to have made them less inclined to fill patients' prescriptions for any kind of narcotic pain medication, which doesn't seem like good customer service or professional business practice to me.  Why should I be denied my pain medication because some CVS pharmacy staff members can't be trusted to handle these medications?

And About CVS's "Painkiller Rules"

I also decided to call my local office of the DEA, because I was told by several different people at CVS, both in the pharmacy and on the telephone with someone in their corporate customer service department, that:

1) The DEA won't allow CVS to answer telephone inquiries about whether they have certain pain medications in stock. (This also applies to CVS stores calling each other on behalf of a patient to see if another store does have the medication in stock.)
2) The DEA won't allow CVS to call me when they have my pain medicine in stock.
3) The DEA won't let CVS hold my prescription while they order the medication for me. (I was told that I needed to go into the pharmacy in-person with my prescription in hand in order to find out if they have my medication in stock.)

Well, guess what? The officer I spoke with at the DEA said that their agency doesn't have any regulations like these for pharmacies.

So what's the real truth here?

I was once told by a pharmacy staff member that the reason CVS doesn't answer telephone inquires about whether they have narcotic pain medications in stock is because they are worried about being robbed. How ironic is it then that the "robbers" they need to worry about are their own employees, not some thugs off the street?!?

I Think Patients In Pain Deserve Better Treatment

What more can I say? A person (like me!) with a prescription for a narcotic pain medication in their hand deserves the same exact customer service experience as someone with a prescription for any other medication behind the pharmacy counter. Yes, I am aware that the rules for dispensing painkillers are different. But as long as it is legal to prescribe them and legal to dispense them, patients living with pain deserve to get their prescriptions for pain medications filled without all the extra judgments, hassles and hoops to jump through courtesy of the pharmacy staff.

Leave me a comment and let me know what you think.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Friday, March 28, 2014

What's Wrong with Healthcare: Getting a Pain Pill Prescription Filled

You want me to fill your prescription?!?   
This series of posts has been a long time in the making.  This year marks 10 years since I started my not-so-new life with daily, disabling chronic pain and fatigue.  I have a multitude of mixed feelings about this milestone, as does my hubby and everyone else who knows and loves me.

As I mulled over my situation yesterday, I realized that, among other things:
  1. the current health care system can't fix me or make me even a little bit better
  2. I am not happy with much of the "health care" I receive
  3. the health care system doesn't know how to care for people with chronic illnesses
  4. my initial assessment that health care reform wasn't going to effect me was WRONG
  5. I believe there are things my health care providers could be doing for me, but the culture within the health care system often prevents them from providing me with care to relieve my pain, symptoms and stress from chronic illness
Which brings me to Rant #1.

Can You Fill My Prescription?

After years of living with pain and struggling when my pain flares up, I found a pain medicine physician who believe in palliative care, i.e care to relieve my pain, symptoms and stress from chronic illness.  She prescribes narcotic pain medication for me.

I got my second prescription for morphine in mid-January 2014.  I took it to the pharmacy where I got my first prescription filled. When I presented my prescription at the drop-off window, I was told that 1) they didn't have the medication in stock and 2) I needed to check back with them at the beginning of February to see if they get it back in stock.

Really?  I have to wait 2 weeks to get my prescription filled.  And you won't even do me the courtesy of calling me to let me know when you have it? That's not great health care.

Let's Try This Again.... 

So then I get the flu.  And I get busy with a bunch of other doctor's appointments.  I wasn't so low on my pain medication that I needed it right away, but I didn't forget about getting the prescription either.  So it's February and I'm at the pharmacy picking up another prescription, and I remember to ask if my pain medication is in stock.  The pharmacy tech tells me yes, but then I realize that I forgot to bring my prescription!  Ugh.

So some more time passes before I finally find myself back at the pharmacy.  And this time I have my prescription in hand.  Yay me!  I present my prescription again, and again I am told it is out of stock.

Well this time I won't take that for an answer.  I ask the pharmacy tech to order it for me.  She tells me they will "try" -- no guarantees -- and I need to call them or come back on April 2nd to see if the medication has come in.

Really? Again?  This is b***s***.

The Reasons Why My Prescription CAN'T Be Filled

So I talk to the pharmacist.  He tells me:

1) they don't keep this in stock because it's a lower dose than what most patients are prescribed
2) they have problems getting this dosage from their supplier
3) they are the 4th busiest location for this chain and their store has problems keeping this dosage of morphine in stock because of the volume of business they do

Blah, blah blah.  Wait, did he just tell me if I was taking a larger dose of morphine he could fill my prescription???

Then I asked if he could call another location to see if they have the medication in stock.  The pharmacist refuses, stating that 1) other locations won't give him that information over the phone and 2) another location would find it suspicious if he called them asking for this information.


It's Complaint Time

Here is the thing.  Right by the drop-off counter is a Notice to Consumers poster from the California State Board of Pharmacy.  The poster says:
"This pharmacy must provide any medicine or device legally prescribed for
you, unless:
  • It is not covered by your insurance;
  • You are unable to pay the cost of a copayment;
  • The pharmacist determines doing so would be against the law or potentially harmful to health.
If a medicine or device is not immediately available, the pharmacy will work with you to help you get your medicine or device in a timely manner."
So when I get home, I head over to California State Board of Pharmacy website and I file an online complaint.

I also head to the chain pharmacy's website and fill out an online complaint there too, letting them know I filed a complaint with the Pharmacy Board as well.

So Will I Ever Get This Prescription Filled? 

Really needing to get my pain medication ASAP, I call another location.  I know this chain's policy is NOT to tell callers if they have narcotic medications in stock because they are afraid of being robbed.  So I start by giving my name and phone number so they can look me up in the system.  Then I ask if the medication is in stock, letting them know I tried to fill my prescription at another location and was unsuccessful. 

I get lucky.  A very nice man puts me on hold, checks, comes back on the line and tells me they have it.  But I guess I won't know for sure until I get my hubby to take me there tonight.

I think there is something really wrong with healthcare if it takes this much time, energy and effort to get a pain medication prescription filled.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Friday, February 28, 2014

Why I Blog About My Life with Chronic Illness

Me, blogging from my couch
I haven't thought about this subject for quite a while, but I am writing about it for a good cause.  When I am done, I will be submitting this post to a blog carnival over at Restoring Quality of Life: the official blog of the Partnership for Palliative Care.

I've done so much sharing here for over 6 years now.  While I was a bit hesitant when I first started, I honestly don't give this topic a second thought anymore.  In fact, when I'm not able to post as often as I would like, I actually feel like something is seriously missing in my life. And from comments I get, I know my readers miss me too when I post less frequently!

So with the power of hindsight behind me, I put my thinking cap on and uncovered 3 main reasons why I continue to share my struggles with chronic illness so publicly. 

Reason #1: To Connect with Others

Ten years ago, I was a very outgoing and social person.  I loved going out with my friends to concerts, dance clubs, restaurants and the movies.  I loved going shopping all by myself for hours at the mall.  I bowled with my hubby in 2 leagues at our local alley, meeting many new friends.  I was someone who didn't mind driving all around town to meet up with friends and visit interesting places!

Ten years ago, I was a clinical social worker with 11 years work experience.  I worked full-time and I interacted with lots and lots of people every day.  At my last position, I even volunteered for the events committee, planning workplace parties and other fun activities with and for my co-workers.

Then 2004, a trip-and-fall accident resulted in the chronic pain and fatigue of fibromyalgia, which took all of these things, and more, away from me. 

Now, leaving the house to do something fun with my hubby or friends is like running a marathon.  It makes my pain worse, it disrupts my fragile equilibrium and it often pushes me beyond my limits.  The unavoidable increase in pain and fatigue makes me feel physically awful and mentally anxious and irritable. In those moments of increased symptoms, I find myself cursing my chronic illness for the devastating effects it has on me.

So I decided to start sharing stories about my life with chronic illness through a blog and on Twitter.  Like a fisherman's net, I threw myself out there to see if I could connect with anyone.  And through the magic of the Internet and the act of sharing my thoughts, feelings and experiences in a search engine friendly format, I attracted others to my blog and Twitter account.  Over time, my posts and tweets became my ticket to the online chronic illness community. 

And just like that, I started meeting new people and being social again in ways that fit with my "new" life.

Reason #2: To Share the Illness Experience

When I began my "new" life with the chronic pain and fatigue of fibromyalgia, I wasn't quite sure what to do.  Initially, I looked to my medical providers to diagnose my illness and prescribe some kind of treatment that would get me back to normal.  As the weeks turned into months and the months turned into years, it started becoming clear that my doctors were going to be able to fix me. 

Thinking back to my cancer experience 16 years before, I realized that to live my best life with chronic illness, I was going to need the support, wisdom and guidance of other people living with fibromyalgia and chronic pain to help me figure out what to do next. 

In 1988, I was lucky to find a young adult cancer survivor group after I finished my leukemia treatment.  They helped me make sense of my cancer experience and find the strength and courage to put my life back together after it was so completely disrupted.  I learned that sharing about my illness with other people helped motivate me to turn life's lemons into lemonade.  And listening to the stories of others in similar situations to my own, about their struggles and successes, helped me to accept and master my own illness experience.  Positive peer influence and support for me are magical, life-affirming gifts.

So with this new challenge facing me, I started looking for an in-person support group.  Much to my dismay, I had no luck!  Then I realized that if other people living with fibromyalgia were like me, attending a weekly support group might be a nearly impossible task. 

Then a "healthy" friend introduce me to blogging, Twitter and Facebook.  Wanting to make new friends and new connections, I drove in and gave social media a try. 

Six years later, social media is a permanent part of my life.  I've learned how to ask for support and, in return, give support to others in these virtual groups and forums. I simply can't imagine my life without this unique way of sharing my illness experience.  I feel I am truly part of a community that is accessible, convenient and, most of all, caring.

Reason #3: To Give to My Hubby and IRL Friends Some Downtime

This might seem strange, but having multiple sources of support in my life not only makes my life better, it makes life better for my hubby too.  Because let's be honest: the people who live with us and/or interact with us the most really need to have a break from us and our chronic illnesses every now and again. 

Being the social person that I am, it is in my nature to want to share everything with my hubby and my friends.  I'm not shy about asking for a compassionate ear when I need a little understanding, empathy and support.  But since the illness I am dealing with is chronic, i.e. an illness that I will live with for the rest of my life, there is a real risk of burning out my support system from overuse.  I care about my hubby and my friends too much to let that happen.

With support needs that are sometimes big and definitely ongoing, I know I need more than just a few people "in real life (IRL)" to lend me an ear when I need one.  Thankfully I've found the extended support network I need in the virtual communities that social media is able to create and support.  I can access this support any time, quickly and easily, through my computer or smartphone.

Final Thoughts

As with all things in this life, social media isn't perfect.  I've encountered misunderstandings, miscommunications, hurt feelings (mostly unintentional), meltdowns and even the occasional fight.  Social media can be intimidating at first and there is definitely a learning curve.  I found it easiest to observe more and interact less at first, a.k.a. be a lurker.  But since most of the rules are literally unwritten, I found the "watch and learn" approach worked best for me.

That said, for the most part, I've found the chronic illness community to be wonderfully polite, supportive, accepting and caring.  But then again, most of us participating in this community have a shared purpose: to live our best lives despite chronic illness.  I think this really helps keep the conversations and interactions focus and helpful.

Now if only I could find a way to meet all my lovely new friends living with chronic illness in-person!

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Friday, February 14, 2014

Love -- In Sickness, not Health

Happy Valentine's Day!  I can't think of a better day to talk about how chronic illness affects my most important relationship: the one with my hubby of over 15 years.

Robert and I met when I was a freshman at UCLA in 1984.  He and I were friends in 1988 when I was diagnosed with leukemia.  While he didn't see much of my day-to-day struggle with month-long hospitalizations and chemotherapy treatments, he also didn't vanish like some of my other friends and family members did.

In 1990, when he first told me he loved me and wanted to go out with me, I freaked out.  Between getting dumped by a boyfriend one month into cancer treatment and trying to cope with the changes life after cancer brought me, I wasn't ready to start dating yet.  So I politely told him no.

Luckily for both of us, I changed my mind 5 years later when we reconnected and rekindled our friendship.

Today, looking back on our 15 years of marriage, I've just realized that I've been living with chronic illnesses severe enough to make me unable to work for almost 10 years now.  So 2/3 of our marriage has been with my sickness, not health.

I told Robert when we started talking about marriage that there was a *possibility* that my health could get worse. We both knew I had chronic Hepatitis C infection, yet ironically, that's not what has disabled me for the last 10 years.

And not even a year into our marriage, I was faced with a new health concern.  I was diagnosed with type 2 diabetes, which isn't causing me any serious problems at the moment, but does require a lot of effort on my part to manage it with diet, exercise, medications and follow-up medical care.

No, the big change happened in 2004 when a trip-and-fall accident started my journey with the constant, severe pain and debilitating fatigue of fibromyalgia.  That accident also worsened a pre-existing, but not yet diagnosed, condition that had been around since the end of my cancer treatment -- dysautonomia.  I've also developed new health problems, like sleep apnea, which is associated with fibromyalgia. Honestly, chronic pain makes all my other health problems worse, in various degrees, and makes managing them all more challenging too.

The other day I read a poster that said, "It's true that pain changes people. Not everyone knows this, not everyone sees this truth. Pain makes you let go of things you'd rather be doing. Sometimes it's OK that the only thing you did today was breathe. Pain changes you.  But it can also make you stronger."  Well, Robert's had an up close and intimate view of all the ways that pain has changed me...and he's seen a lot of unpleasant, undesirable and uncomfortable things in the last 10 years. 

Let me be frank and to the point.  I'm less frequently my cheerful self when my pain, fatigue and sleep-deprivation are at high levels.  I need more help now and Robert is the one around who can help me.  As much as I plan, pace, schedule, restructure activities and rest, my ability to participate in life's activities, from mundane daily chores to fun special events, is highly unpredictable.  No wonder my hubby gets irritated with me, or rather my chronic illnesses, sometimes.

My chronic illnesses don't just effect me physically; chronic illness affects my concentration and memory too.  Brain fog makes me forgetful, even when he just told me what he needed me to do.  Try asking for help when all of a sudden you can't remember the word for the object you need your spouse to bring to you!

If I fall apart, physically, mentally or emotionally, it is Robert who is usually there to witness it.  If I have a bad day, it impacts him the most.  If I am in a really bad mood, he's most likely to caught up in it.  If I can't do something, he's the one that will have to do it instead.

Yes, we have avoided being part of the statistic that shows 75% of marriages in which one spouse has chronic illness end in divorce.  But no, our marriage hasn't always been easy.  Ask Robert and he'll tell you we've had more than our fair share of bumps (or mountains!) in the road. 

How have we done it? I think being friends for 14 years first and then dating, getting engaged and married helps.

I try to always be polite when asking for his help and grateful for the things Robert does for me. I try to tell him thank you frequently.  I've learned to take a "time out" and retreat from his presence if I am really out-of-sorts.  And I take the time to explain what is going on with me, often multiple times, until he really seems to understand.

Between explanations and witnessing my behavior over the last 10 years, I think he now really knows what is up with me -- sometimes better than I do!

One thing I've needed in the past several years is his help driving me to doctors' appointments.  I have to say going to my appointments and being in the examination room with me has really been an education for him!  He is now very annoyed that all the medical doctors and all the medical specialists can't put his wife back together again.

Finally, one thing that is both endearing and frustrating to me is his insistence that I do as much as I can myself.  His urging is a good reminder that there are activities and better days when I can still do things without his help.  Of course, when I need his help and he can't see that, it's quite frustrating.  But I think it shows that he hasn't given up hope that one day I'll be the Selena he fell in love with again. 

I hope some day I can get better too, for myself and for him, because living and loving with chronic illness makes it hard for both of us.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Thursday, February 6, 2014

Five Flu Survival Tips for the Chronically Ill

Fourteen days ago I got the flu from my husband.  Seems the virus has invaded his workplace and many of his co-workers are sick too.  Of course, instead of staying home and taking care of themselves, some of his co-workers continue to go to work and spread the flu to others! 

I know it was serious this year because my husband actually took sick time and stayed home. 

Unfortunately for me, it it pretty much impossible to avoid getting sick when you live with someone who has the flu. 

Tip #1: Get a flu shot

Yes, I did get a flu shot this year.  Personally, I am thankful that I did, because here in California, this year's flu outbreak is serious.  The flu has killed almost 200 people this year in my state and is hitting the 18 to 49 year old age group the hardest.

In the past, I have debated over whether to get the flu shot or not.  My reluctance stemmed from a flu shot I got back in 2007 which resulted in a massive migraine headache about an hour or so afterwards.  Looking back, I think the real source of the headache was that the injection was made into a trigger point, which aggravated it and caused the headache.  Now I ask the nurse to poke around first and select a site that isn't too painful.  This strategy has prevented a repeat post-flu shot headache.

Talk to your doctor about the pros and cons of getting a flu shot.  Because if you have pre-existing medical conditions like me, getting the flu can be serious, even life-threatening. 

Even with the shot, you can still get the flu like I did this year.  But I believe getting a flu shot this year prevented me from developing a more serious case of the flu and helped me avoid flu-related complications and hospitalization.

Tip #2: Get your family flu shots too

This year, my hubby had a "light bulb" moment.  "I should get the flu shot too, should I?" he said to me.  "Yes, you should," I replied.

While I am grateful he (finally) had this insight, secretly I just wanted to hit him over the head.

The flu is contagious. That means it can be passed from person to person when the virus becomes airborne through coughs, sneezes and even just talking to someone.  Plus if people touch their noses and mouths, they will transfer the virus to their hands -- and our hands touch almost everything around us.  Once you get the flu, you can spread the infection for 5 to 7 days.

So perhaps the best thing to do is convince those around you to get the flu shot too.  It might be hard to convince them, but don't give up trying.  Your family needs to know that the flu shot helps create a barrier around you that can keep you healthy.

In the past, my hubby said, "I don't get the flu and I have never gotten a flu shot."  Clearly that didn't happen this year...which has lead to his change of heart.

Tip #3: Slow the spread of the virus

Things like hand washing, covering your cough or sneeze with a tissue and disinfecting surfaces can help prevent the spread of the flu.  Using hand sanitizer when you are out and about might be helpful too.  Training yourself not to touch your face with your hands, while hard to do, can prevent the virus from getting to where it likes to live. 

The problem is, getting the people you live with to be conscientious about doing these things too might be hard.  And the alternative, spraying down every surface of your home with disinfectant on a daily basis, might not be practical, affordable or good for you.

What would be most helpful is if people who were sick, especially those running a fever, would stay home and rest for a few days. 

Tip #4: Antiviral drugs may help

When taken during the first 48 hours after you get the flu, antiviral medications can lessen symptoms and speed your recovery.  But you also need to know what the flu symptoms are and be able to see your doctor right away to get a prescription. 

In the past, I have talked to my doctor at the start of flu season and gotten a prescription ahead of time, "just in case."   Somehow I forgot to have this discussion with my doctor this year.  Guess it's time to create a recurring task in my calendar so I don't forget next year! 

Tip #5: Get your Vitamin D in the normal range

I know that taking supplements to get my Vitamin D level back into the normal range had made a HUGE impact on my immune system.   Not only have I avoided more colds and flus, when I do get sick, my symptoms are much less severe. 

A rheumatologist first tested my Vitamin D level back in 2005 and discovered it was low, but I didn't begin to treat it in earnest until a few years later when the test was repeated.  I am sure that rheumatologist tested me because there is a link between low Vitamin D levels and pain.  You can read more about Vitamin D supplements reduce pain in fibromyalgia sufferers at Science Daily.

I wish I could tell you that taking Vitamin D has helped my fibromyalgia pain.  It has not.  But I am pleased that I don't get sick as often and as badly as I did before. 

Based on my experience, I'd suggest you ask your doctor to check your Vitamin D level too.

I hope you have found these tips helpful.  To learn more about what you can do about the flu, check out CDC Says “Take 3” Actions To Fight The Flu .

DISCLAIMER:  This post is intended to convey general health information and is not a substitute for professional medical advice. Please consult your health care provider to make sure these tips are right for you.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, January 15, 2014

Getting to Know Me, All Over Again, After Hepatitis C Treatment

While distractions might have gotten me through 2013, they also pleasantly postponed me from diving into the new personal health management work I need to tackle.

You see, I reached a new low point with my health last year.  Hepatitis C treatment in 2012 really took a toll, in expected and unexpected ways.  It's been over 16 months since it ended and I finally feel like I have a handle all the challenges treatment presented. 

The anemia-induced exacerbation of my dysautonomia symptoms resolved and my extreme sensitivity to the sun disappeared in about 3 months.  The extreme fatigue and overall weakness got gradually better with each month that passed too.  Within a year's time, I was pretty much back to my "usual" level of chronic illness related fatigue.  Oh, and a sore that developed during treatment finally fully healed at the 15 month post-treatment mark. 

Now I just need to conquer the small intestinal bacterial overgrowth (SIBO) in my gut to get back to my pre-treatment self.  Oh, and get a handle on new problem: high cholesterol.  That was a surprise.  Seems the only good thing about having chronic Hep C infection is that the virus keeps your cholesterol low because it uses the fats in your body during its viral replication process.

As for my diabetes, there's been no dramatic improvement in my insulin resistance or glucose control since beating the virus.  And in regards to my fibromyalgia and chronic pain, there's been no improvement there either.  I am disappointed on both accounts.  However, I did some more research when I didn't get the outcomes I wanted and I remain convinced that my 24 year long chronic Hep C infection played a role in the appearance of these two conditions.

I read an article by Dr. Mark Borigini, a rheumatologist at the National Institutes of Health, and learned that Hep C can flip a (metaphorical) switch and trigger fibromyalgia symptoms.  However, it appears that when the virus leaves, it doesn't turn the switch off on its way out the door.

The same is true for type 2 diabetes.  Science Daily reported back in 2010 that Hep C flips yet another (metaphorical) switch and causes people with a genetic predisposition for type 2 diabetes to develop this condition decades before their family members do.  My paternal grandfather developed type 2 diabetes is his 70's; I developed it at age 33.

Darn inconsiderate Hep C virus, causing damage and not cleaning up after itself on its way out of my body!

Want some good news? A repeat viral load test in October 2013 showed I was still undetectable, which IS good for me in the long run.  According to a new study from Taiwan, having Hep C increases the changes of complications from type 2 diabetes.  Successful treatment of Hep C infection in persons with type 2 diabetes reduced the risk of kidney disease, stroke and cardiovascular disease by roughly 50%. 

So successful treatment helped me dodge some potential future health problems.  I am grateful for that.  And I am sure as time progresses, science will catch up and learn more about what Hep C really does to a person's body, and I will be grateful for avoiding those long-term consequences too. 

In the meantime, I need to get focused on the present and finish my recovery -- from both treatment and 24 years of having my body hijacked and turned into a viral replication factory.  It's been 16 months since treatment ended and the truth is this recovery process isn't over for me yet.  Much like when I completed my cancer treatment 25 years ago, I now need to learn to live in a body that isn't quite the same as it was 22 months...and that is going to take some time. 

2014 is the year I will really start getting to know what my body is like without Hepatitis C.

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, January 8, 2014

2013: The Year I Really, Really Needed Distractions

Welcome 2014!
I know I didn't spend much time here last year and I really missed blogging.  But I am happy to report I am ready to dive back in.

As for my absence and what dragged me away from my blog, well, let me tell you, it was probably the best thing that happened to me in 2013.


Last year was not one of my better years.  Successful Hepatitis C treatment the previous year left me starting 2013 at a real low point physically and emotionally.  It left my body battered and struggling with a whole new set of treatment-induced medical problems.  Then, 3 months into 2013, I sunk even lower.  A car accident in March added injury to insult by starting a humongous pain flare-up and adding another new set of problems. 

Six weeks later, I was shocked and saddened by the news that my favorite Facebook game, Pet Society, would be closing in 2 months' time. 

I want to share all about these new health issues with you, but I'm afraid that is going to take a lot of time.  So for right now, I promise to write more about them in future posts.


Time and again, I've written about how distraction is the primary way I cope with chronic pain.

Nothing helps me more than getting lost in a good book, television show or computer game, spending time tending to my container garden, playing with my pets or working on arts and crafts projects.  I have devoted time to creating lists of activities that I can participate in, regardless of how good or how poorly I feel on any particular day. One of my most important rules for living well with chronic pain is Have Fun Every Day and these pastimes, aka distractions, make it easy for me to have some fun each and every day.

Because really, if I have no choice but to live with moderately-severe to severe pain 24/7/365, I might as well figure out a way to have fun doing it, right?  Because life with chronic pain is absolutely no fun at all. And with increased medical problems and pain, I needed distractions more than ever in 2013 to help me get through all the tough stuff.


OK, so this is a little off-topic, but did you know, there is a reference at Wikipedia about this very concept?

Distraction is useful in the management of pain and anxiety. Dentists, for example may intentionally hum an annoying tune or engage in small talk just to create a diversion from the dental surgery process. Topical ointments containing capsaicin, provide a superficial burning sensation that can momentarily distract a patient's attention away from the more serious pain of arthritis or muscle strain.


With everything going on, this was NOT the time to be losing a tool out of my chronic illness toolbox!  Pet Society, a lovable little online Facebook game, provided me with hours of distraction from my chronic pain and fatigue.

As an early adopter of Facebook games, I honestly didn't think that a day would come when my games would be taken away from me.  Clearly I never stopped to consider the business side of gaming or took the time to read the Terms of Service for one of my favorite pastimes and coping strategies. 


I'm not even sure how I got swept up into the #savepetsociety protest movement or how I became such a prominent participant in what would unfold next.  What I do know is that my participation in this protest became a substitute for the favorite distraction I was losing. 

Now protesting wasn't as fun as playing the game, but it showed me how to use some old skills in a new way.

In my former life as a (somewhat) healthy person, I chose social work as my career.  I loved working with individuals, groups and communities, helping them figure out ways to address their needs and, in the process, create better lives for themselves.  This occupation requires a lot of interpersonal interaction, something that I no longer have the energy, concentration and stamina to do.

Interacting with people on a daily basis is what I miss the most about my career as a clinical social worker.

Fortunately, I discovered Facebook, Twitter and blogging in 2008.  Though not the same as an in-person social life, online social media became an alternative way for me to be social when I was able.

During the last 8 months of protesting, I used 1) all my old community organizing skills and 2) all the things I learned about social media to advance our campaign to give our game a second chance.  While ultimately our protest didn't achieve it's goal, our group put up a good and valiant fight and in the process got our message heard by Electronic Arts (EA), the gaming community and journalists in the business, human interest and gaming sectors.

That said, I am glad that things are winding down now.  Knowing this was a time-limiting endeavor, I think I might have pushed myself too hard, breaking my Golden Rule of Chronic Illness:
If you push, you will pay.
If you pace, you can play!


So as I move into this new year 2014, I wonder how I can translate what I was able to do and accomplish through the #savepetsociety protest into something more permanent in my life. 

To be honest, I'm not sure exactly what that would look like.  Perhaps a new role as a "armchair advocate" or some very flexible part-time work on social media campaigns?  Perhaps a place to start is to reread my copy of Women, Work, And Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe to get some ideas. 

While I doubt there are existing work-when-you-can employment opportunities available for us sick chicks, it doesn't stop me from daydreaming about participating in life as much as I am able.  Who knows?  Maybe I can convince someone with the time, energy and resources to help make this a reality for myself and others like me.

It is certainly a good idea, one that would help all us Chronic Babes overcome some of our handicaps and live our best lives despite chronic illness. Don't you agree?

Creative Commons License

Like this post? Then please...

Submit it to your favorite social sites.

Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails