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.

W.....T......F!

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.

Hepatitis C Treatment & Little Miss Grumpy

That's me, Little Miss Grumpy.

It's official. Hepatitis C treatment has turned me into Little Miss Grumpy and today she needs to vent.

Here is the thing: I knew going into this that I could have all sorts of side-effects from treatment. I also knew that it could potentially make my other chronic conditions temporarily worse. But this was a calculated decision. I was willing to endure a short-term increase in my medical problems to gain a long-term reprieve from chronic Hepatitis C infection, the only chronic condition I have that could potentially be cured.

I just thought I would be getting more help managing the medical problems that emerged during and after treatment.

My recent experience has taught me that this isn't what happens when you go through Hepatitis C treatment at UCLA. Every appointment I'd go in with a list of side-effect and all I got back was blank stares. So I asked for help directly and I still didn't get it. The message I got over and over was my "unusual" side-effects or the impact of treatment on my pre-existing conditions wasn't my hepatology team's problem.

Even the side-effects that were clearly related to my Hep C treatment, like needing a blood transfusion because of ribavirin-related anemia, were treated like "action items" to be delegated to one of my other doctors.

So I had to go looking for help elsewhere. But since all my other doctors were looking to the hepatology team to "manage" my response to Hepatitis C treatment, they responded with uncertainty and hesitancy when I came to them asking for the help I wasn't getting.

So I went looking for new doctors, mostly specialists, to address my specific needs.

O.K., I'm not say that I regret doing Hep C treatment. I still think it was the right choice for me. What I am saying is:

• my expectations for how my Hepatitis C would be managed were definitely not met 
• this continues to be an ongoing problem for me, 2 1/2 weeks after my Hep C treatment has ended

Case in point:  I have two skin infections and one gastrointestinal issue that emerged during treatment that continue to cause me problems. I've identified and dragged myself to different specialists.  Now the treatment plans for these conditions are conflicting with each other.  Plus I know they also will make some of my other conditions worse.

Add to that the absence of a medical professional willing to coordinate my care and prioritize these issues with me.  Yup, I don't have, but desperately need, a substitute quarterback for my medical team. I'm just too sick to keep calling all the shots and making all the plays.

Don't even get me started about how much pain and suffering all these issues are causing me. Or how much of my energy I have needed to divert from resting and recovering from treatment to making new medical appointments, starting new medications and managing my burgeoning medical care.

If I think about it too much, it can become overwhelming...

Strangely enough, what really bugs me the most is that I might have given one of my skin infections to my dog Theodor. Or maybe he gave it to me while I was immune suppressed during treatment. Either way, it breaks my heart to think he is suffering too and I might have caused it!

He's got to go to the vet now, and you know what that means...more precious time, energy and money expended. I joked with my hubby that the vet will probably figure out what Theodor has and start treating it before my medical doctors figure out what is going on with me.

Maybe I should have the vet look at my skin instead.

The thing is, 24 years ago when I underwent chemotherapy for leukemia, I had a team who really took care of me, both in and out of the hospital. Silly me, I assumed I'd have a similar experience with Hepatitis C treatment. After all, with a nurse who said I could call 24/7 if I had problems and a team consisting of a doctor, nurse, nurse practitioner and administrative assistant, the hepatology team appeared able to meet my needs.

Ah, but looks can be deceiving...

Clearly cancer treatment and Hepatitis C treatment are two entirely different things, like comparing apples and lemons. The most important difference: feeling supported by my oncology team versus being labeled as a "difficult patient" by my hepatology team.

As someone who has now gone through both treatments, I think oncology has a lot to teach hepatology about how to care for patients. Unfortunately, it seems that hepatology at UCLA is not interested in learning how to do Hepatitis C treatment better. According to a hepatologist I recently consulted there, the long-term goal is to delegate Hep C treatment to primary care physicians once an antiviral cocktail with fewer side is FDA approved. He thought this would be happening in the next 2 to 3 years.

Isn't that nice. And doesn't that speak volumes about how some hepatologists view patients living with Hepatitis C?

You know, I hate to say this, but sometimes having a great patient care experience raises our expectations for our future medical care too high. Plus great care makes it so much more obvious when we get poor care. And what patient wants to get or put up with poor medical care?

But then again, not every doctor can be the best, the brightest and the top of their class, can they? Even the Hippocratic Oath doesn't guarantee that every doctor will be committed to good, solid and reliable patient care, not all or even most of the time.

Will I get through this current dilemma? Yes, of course. When will that happen? I don't know that just yet. I'm taking it one step at at time and right now I am still busy trying to get appropriate and timely care for my current medical needs.

Until I get what I need, including more rest and relaxation time, I'm afraid Little Miss Grumpy is here to stay--but just for now.  I wonder if bribing her with treats or letting her stay up late watching movies through Netflix will help her chill out? Couldn't hurt to try, right?

15 Ways Hepatitis C Treatment is Kicking My Butt

In eight weeks, I've moved from the hard part of Hepatitis C treatment into the uphill climb portion of the journey.  

So today I am going to share some very personal details about the many ways Hepatitis C treatment is kicking my butt.  I do this partly to vent and partly to educate.  Think of this post as a behind-the-scenes look at what Hep C treatment is really like and then file this under TMI--as in, too much information.


For starters, I didn't know that between weeks 8 and 12, the full effects and side effects of the Hep C medications rear their ugly heads.  I'm taking three different medications, Pegasys, ribavirin and Incivek, each with its own laundry list of side effects.  Which means a whole smorgasbord of things might happen to little old me. 

That, of course, is on top of all the symptoms of my other chronic illnesses. 

So here are all the ways Hepatitis C treatment has kicked my butt so far:

1. Taste bud changes: Food just doesn't taste that same, or all that good, to me anymore.  It's making taking pills with food four times a day a real chore.
2. Nausea: I hate feeling sick to my stomach.  The worst is feeling nauseated AFTER I take my medications.  I frequently find myself praying for everything I just swallowed to stay down while I wait for the anti-nausea medication to kick in.
3. Fire-rrhea: A special kind of diarrhea, that closely resembled what happens after you ingest colonoscopy prep.  Only this is from the anti-viral drug Incivek and occurs on a random, but frequent, basis.  The fire refers to how my tush feels after the rrhea subsides...
4. Anal itching: This is the aftermath of fire-rrhea (see #4).  Also known as the itch you must not scratch, because you'll invite a whole host of nasty problems into your life if you do.
5. Pruritus: A form of whole body itching that can occurs anywhere on your body, usually in several places at a time.  That's because it's associated with your nervous system.  It can sometimes be associated with a having a rash (see #6). 
6. Rashes:  As with several other items on this list, rashes during treatment can be caused by more than one medication--in my case, Incivek and/or ribavirin.  The Incivek rash notoriously shows up between weeks 8 and 12 and can cover a large part of the body.  I just have to wait and see what happens to me...
7. Anemia: I've already talked about this side effect here and here, but perhaps what I forgot to mention is that BOTH ribavirin and Incivek can cause anemia.  Anemia gives me frequent shortness of breath, tachycardia, cold hands and feet, pale skin and a profound lack of energy.
8. Rag Doll Syndrome:  Saying I have fatigue just isn't descriptive enough.  There are literally days where I feel like I cannot move because I have no energy.  And there are many nights where, completely and utterly spent, all I can do is collapse into bed and hope that some sleep can restore me.
9. I'm Hot, I'm Cold:  No, it's not peri-menopause, it's my weekly interferon shot. That and my anemia-induced cold hands and feet.  It is making it really hard to gauge my body temperature and has led to several incidents where I have gotten overheated simply by having too many covers on my body while I am in bed.
10. Bright Lights:  Interferon is also making my eyes exquisitely sensitive to light.  This might be a consequence of the mild (and hopefully reversible) retinopathy that has developed in my eyes over the past 8 weeks.
11. Strange Noises:  For some reason, I can hear the background noises in TV shows as if they are in the foreground and it literally drives me crazy trying to figure out what is being said and by whom.  I also have developed tinnitus in my left ear, as well as occasional stuffiness in both of my ears.
12. Intra-nasal Sore:  In the really weird category, after a massive pruritus attack involving my nose, I developed a sore inside my nose.  It has literally taken over three weeks, three doctor's visits and two prescriptions for it to start healing.  It's now at about 95% healed.
13. The Sahara Desert:  Good grief!  These medications have dried out my skin, my eyes, my mouth, my finger nails and my hair.  Thankfully I have found several different over-the-counter products that help combat the dryness.  Plus I drink LOTS of clear fluids every day.
14. Dizzy Dummy:  There are so many days now when gravity is just not my friend.  For example, a trip from the living room to the kitchen can require a slow rise from sitting to standing, a slow shuffle to the kitchen and then a nice sit-down rest once I get there.  I am also using my cane and rolling walker a whole lot more these days.
15. The Water Works:  There are random moments every week, in response to ordinary things, where I am overcome with the need to cry.  Before you start thinking that I am losing it, I should tell you that this is a documented psychological side effect of the interferon.  So are crabbiness, feeling keyed-up and forgetfulness too.

Now I know these all sound terrible when compiled together into a list.  So I promise that next time I have the energy to write a blog post, I'll share with you all the ways I manage and combat these side effects.  I've got a handy dandy Hep C treatment first aid kit filled with over-the-counter items that are really helping me keep these side effects manageable. And where those items have fallen short, my doctors have stepped up and given me prescription medications to fill in the gaps.

Being prepared with home remedies in hand from the start has made a big difference in the course of my Hep C treatment.  I can't wait to share my tips and tricks with you next time.

PLEASE NOTE:  If you are thinking about Hep C treatment, know that everyone on treatment will experience some side effects.  You can't know until you start treatment how the medications will affect you.  Thankfully, most side effects are mild to moderate and the vast majority can be managed with the help of your doctor so as not to interfere with your treatment and its success.

Related articles

• Getting Through the Hard Part of Hepatitis C Treatment (ohmyachesandpains.info)
• The First Bump In the Road of My Hep C Treatment (ohmyachesandpains.info)
• Me & Hep C: I Am Part of the Next Big Epidemic (ohmyachesandpains.info)

Health Care Professionals Can Be Idiots Too

Health care professionals can be idiots too.  There, I said it. 

Yup, they can be just as stupid, ignorant and clueless as the rest of us...only their mistakes and missteps can have life-altering, and sometimes life-ending, results.  Based on this alone, I want to hold them to a higher standard. 

Only I am quickly learning that what I want to do and what I need to do are two completely different things...

No Respect for My Pre-Existing Conditions

Truth is, I don't want to have to be writing this post and letting you know that things are not going smoothly for me.  I don't want to discourage anyone living with Hepatitis C from considering their options and proceeding with treatment if that is in their best interest.

But I have a BIG problem and it is not going away.  So I need to deal with it.

My problem is that I live with multiple chronic illnesses, including diabetes, fibromyalgia, chronic pain, cancer treatment late effects and, the biggest complication of all, dysautonomia.  I have repeated these diagnoses ad nauseam--over, and over, and over--to my Hepatitis C treatment team.  They nod, they write them down, but at the end of the day they just don't get it.  They don't get that my pre-existing medical conditions are affecting my Hepatitis C treatment experience.

Won't Talk to My Other Doctors

I was warned before the start of Hep C treatment by my neurologist that ANY treatment-related anemia would make my dysautonomia symptoms worse.  At the start of treatment, when I share with the hepatologist and hepatology nurse that the neurologist prescribed Florinef, an oral steroid medication, to treat any increase in my dysautonomia symptoms, they said I could not take oral steroids during treatment.  At week two, I asked my hepatologist to call and consult with my neurologist regarding my dysautonomia because, sure enough, treatment-related anemia was making my dysautonomia symptoms much, much worse.  Shortly after my request, the hepatologist agreed I could take the Florinef.

Silly me, I thought the reversal in the hepatologist's stance was because the two doctors finally talked.  That was until I talked to the hepatology nurse a few weeks later, who commented, "I thought the Florinef was preventing anemia by saving red blood cells."  "Uh, no," I replied, "It helps my body retain salt which increases my blood volume and makes up for the loss in blood volume due to anemia."

Playing Pass the Buck

I'm also not sure why, but when I started Hepatitis C treatment, I wasn't given a consent form for treatment that listed all the goals, procedures and side effects of treatment.

That was unfortunate for me, because it meant I had no idea how my hepatology treatment team was going to handle things like anemia, low white blood cells counts, side-effects, etc.  So when things have come up--and it seems like every week something new does come up--I spent a lot of time and energy bringing my concerns to the hepatology team's attention.

From there, sometime they handle the problem and sometimes they delegate it to someone else.  Either way, it always means a lot of work for me: making phone calls, making appointments, going to doctor's visits, going to the pharmacy, asking for follow-up lab slips, asking for lab results, etc.

Sadly, when they decide to "delegate" my care, it has the flavor of dumping me onto another medical service that might or might not be able to help me.

For example, hepatology tried to delegate my blood transfusion arrangements to my primary care doctor.  Only I found out my doctor was out-of-town at the time and the doctor covering for her informed me that the Family Health Clinic didn't have a way to expedite a request for an outpatient blood transfusion.  So I had to call the hepatology nurse back, let her know my primary care doc was out of town and that hepatology needed to make the blood transfusion arrangements.  The end result?  I got sent to the Emergency Room instead of the outpatient cancer center (where it turns out I would have gotten better patient care.)

The Laissez Faire Approach

I have been pushing hard to have my blood counts monitored on a weekly basis while they have been in flux.  After all, I figured if the hepatology staff had the numbers in front of them, they could be proactive in treating these side-effects.  Especially since I told them that anemia would make my dysautonomia worse...

Boy, was I wrong.

On top of that, I have to listen to the hepatology nurse constantly telling me I don't need to have my labs drawn every week.  My best guess at what that really means?  She is too busy/absent-minded/lazy to be checking my labs on a weekly basis and following up with the doctor when action is needed.

I don't agree with her.  So I ask for a lab slip and then call her weekly to ask her to check my results. 

My latest dilemma?  I just had labs drawn Tuesday, April 10th.  Based on those labs, my hemoglobin has once again dropped, from 9.8 to 9.1, in 7 days.  (The critical level is 8.5.)  But the hepatology nurse made it a point to tell me she doesn't think I need to go back to the lab this weekend and have another level drawn before my doctor's appointment on April 17th.  No, instead, if I did things her way, I would talk to the hepatologist about further side-effect management decisions, like a ribavirin dose reduction, blood transfusion or start of erythropoietin therapy, based on week-old hemoglobin results.

Of course that left me asking myself How does this make any sense?!?

Today I sent out an email to my primary care doc asking her to fax me a lab slip so I can get the level rechecked closer to my upcoming Tuesday appointment.  That way, I can get the hepatologist and his nurse practitioner to make any necessary arrangement during my clinic appointment for a blood transfusion or a prescription for erythropoietin based on real-time lab results.

I am happy to report got the lab slip a few hours later and I am good to go back to the lab this weekend.

I'm One Frustrated Patient

I am so frustrated about this ongoing situation.  I would LOVE to transfer my care to another hepatology nurse, only there isn't another one in the practice.  So all I can do is deal with my anger in productive ways by being the best damn patient advocate for myself that I can be.   Because, well, my life really does depend on it right now.

I can also list all the things that really irk me about my current hepatology health care providers.  Maybe you can relate to this list too.  After all, can you really trust health care providers who:

• don't listen to their patients or ask them questions
• don't look up information on the conditions their patients' have
• don't read up on the medications their patients take
• don't or won't take responsibility for their patients' care and well-being
• don't or won't work with other health care providers as a team
• don't communicate with patients by email
• won't be proactive about the management of their patients health problems

That said, rest assured I am not going to let my Hepatitis C treatment providers injure or kill me. No way, no how--it's not going to happen. That's because I have a health care team that I can fall back on and ask for their help when I don't agree with how my Hepatitis C treatment is being managed.

Yes, today I am thankful I have other health professionals I can rely on for my care.  In particular, thank goodness for my primary care doctor! I think I am going to owe her a huge debt of gratitude when all is said and done.  What do you think?  Should get her a present?  If so, what should I get her?

Still hanging in there and taking it day by day...even on Friday the 13th!

Wow, could I really use your support!
I've got 120 days of Hepatitis C left
and sometimes that seems like such a long time...  

Learn how you can support me here.

Related articles

• The First Bump In the Road of My Hep C Treatment (ohmyachesandpains.info)
• Getting Through the Hard Part of Hepatitis C Treatment (ohmyachesandpains.info)
• My Hep C Treatment: A Pit Stop at the Emergency Room (ohmyachesandpains.info)

My Hep C Treatment: A Pit Stop at the Emergency Room

If you follow me on Facebook or Twitter, then you probably already know that I made a little detour Monday to the Emergency Room to get a blood transfusion.

As I explained here, a low red blood cell count is a side-effect of ribavirin, my pink "girl power" pills, and my latest blood work from last Sunday showed that my hemoglobin had gotten too low.

Here is a chart that shows exactly what has been happening to my hemoglobin count:

Time Frame	Hemoglobin level
before treatment	13.5 (normal)
treatment week 2	10.5
treatment week 3	8.5
treatment week 4	7.8

Now compare my values with the normal hemoglobin range for a woman, which is 12.0 to 15.5 grams per deciliter (per the Mayo Clinic.)  When my hemoglobin level reached 8.5 g/dl, that was the critical point where medical decisions needed to be made to reverse the decline in my red blood cells. That first decision was a ribavirin dose reduction on March 19th and the second a blood transfusion on March 26th.

During my blood transfusion experience this week, I have to say a lot of different thoughts came to my mind, from the practical to the absurd:

• Darn.  If I had known that blood transfusions where a part of Hep C treatment, I would have gotten vaccinated for Hep B a long time ago.  (I started the vaccination series back in February 2012, but have not had enough time to finished it yet.  However, my primary care doctor did say that the first shot conveys about 80% of the immunity.)
• Good grief!  I had a blood cancer, leukemia, 24 years ago and that treatment required a multitude of blood transfusions.  I got a blood-borne illness, Hep C, from the blood transfusions.  Now in 2012, I am treating the Hep C, which is making me anemic and in need of a blood transfusion.  (How's that for coming full circle?)
• Crap.  Now what I am going to get.  (More of an emotional or gut reaction, since blood transfusions today are much safer than they were 24 years ago.)
• Yikes! The last time I had blood transfusions, I had so many of them I started getting transfusions reactions. And now I am worried...  (Everything went O.K.) 
• Huh.  I am really hoping this doesn't become something I need on a regular basis. (Note to self: must make some phone calls and discuss other options with my doctors.)
• Wow, I do feel better now that I am getting some red blood cells.  (I also feel a little strange knowing I have someone else's blood inside me.)
• Sigh.  I wish my Dad was still here.  *sniff-sniff* (Towards the end of my cancer treatment, my Dad regularly donated blood and platelets to me, which ended my transfusion reactions and literally saved my life.  Where he still here with me today, I know he would be heading to the blood bank to donate blood for me once again.)
• He, he!  One of my friends on Facebook just called me a vampire!  Ha, ha!  (Yeah, not sure I want to BE a vampire, but I appreciate the chuckle that comment brought me.)

Overall, I do feel better since the transfusion.  I feel less like a rag doll (as my reader Mo so aptly described how anemia feels in a very nice comment she left me--thanks #13!) and more like a flesh and solidly-boned person.

Unfortunately, this period of blood cell count changes is not over yet and I will need to go back in about a week to have my counts checked once again.  Hopefully the benefits of the ribavirin dose reduction I underwent on March 19th will reach their full effect by then, which would mean my hemoglobin level will stabilize and no further medical intervention is needed.  *fingers-crossed*  

Meanwhile, my white blood cell count is down too.  It is currently hovering around 2.8 to 3 billion cells per liter.  (The normal range is 3.5-10.5 billion cells/L.)  Perhaps this explains why I caught a cold at the end of last week?  But I also seemed to get over that cold pretty quickly, probably because of the extra virus-busting boost I get each week after my shot of interferon.  I'm going to stop here because this topic really deserve a post of its own, which I promise to get to in the upcoming week...

For now, just know that I am tackling every side-effect that comes my way and working to keep everything in perspective, as I continue to trudge my way uphill during this, the hard part of Hep C treatment.

Until next time...

Want to be a member of Team Vampire Selena? 
Support me during the remaining 168 134 days
of my Hepatitis C treatment!  

Learn how here.

Related articles

• Getting Through the Hard Part of Hepatitis C Treatment (ohmyachesandpains.info)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Can You Help Me Get Through Hep C Treatment? (ohmyachesandpains.info)

My Big News: My First Hepatitis C Treatment Milestone

Welcome to Wordless Wednesday,

where the focus is on visual images.

My first Hepatitis C treatment milestone.

Want to be a member of Team Selena? 
Support me during the remaining 168 135 days
of my Hepatitis C treatment!  

Learn how here.

Me & Hep C: Week One of Treatment Completed

It's time to celebrate!

Week one of Hepatitis C treatment has come to an end...only 23 more weeks to go.

As someone much wiser than me once said, "A journey of a thousand miles begins with a single step." Well today I have finished 7 of the 168 days of my Hep C treatment journey.

To prove to you all that I am doing OK, (or that I am just a really good actress, LOL!) I recorded this video to mark the occasion:

Video Transcript

Hi, this is Selena from the blog Oh My Aches and Pains!  And I have just completed, with your help, week one of my hepatitis C treatment. 

I could not have done this without you guys, with all of my Selena's Hep C Treatment Supporters.  You guys are the best with your messages, your (Facebook) wall posts, your "Likes", your tweets,  your comments, your e-mails.  You guys are really helping me to keep my spirits up and keep me focused on my goal here which is to beat Hepatitis C. 

If you haven't already headed over to SignUp Genius and signed up for a support mission, hey head over there now.  I've got 24, no 23 more weeks of this treatment to go, so I can use all the support I can get!  And if SignUp Genius doesn't work for you, hey that's cool; do whatever works for you.  Just keep those messages coming and I can't tell you how much they mean to me.

Now I do want to let you guys know that I have already had some side effects this week, but so far everything has been manageable. 

I've also been dealing with a little bit of stress with my healthcare providers, trying to getting them to listen to me and incorporate some of my needs into the treatment protocol.  I found out before I started treatment that we really have to watch my red blood cell count closely because if I get anemic from treatment it's going to make my dysautonomia worse.  And dysautonomia is what got me into trouble last time I tried the Hepatitis C treatment and it made me have to stop the treatment after three weeks.

You know, this has kind of involved calling some of my other healthcare providers, not the liver people, to get them involved.  And I also made a choice to call Patient Relations when I felt like hepatology folks weren't really listening to me.  You know I was a little apprehensive about doing it, but what has come out of that is an appointment Tuesday with my doctor (and) with the hepatology nurse. 

And I'm feeling a little more confident today that if we get to sit down and talk, like we are going to be able to, that we can figure this out and come up with a plan, involve more of my other treatment providers if that's appropriate, and then we can kind of just move forward.

My whole big thing is that I want us to be prepared and they want us to try to catch things early if I'm going to have side effects so that they don't become big deals.  So I'm hoping this approach will work and obviously I will let you guys know (the outcome.)

Again I want to thank you so much for all of your support and I can't tell you how much I appreciate it.  And so now I've got to get my act together and start making some of those cool giveaways for my end of Hep C treatment party I promised you guys.  So, keep sending the support, I am going to keep putting your names into the raffle for the end of treatment party.  I will also share with you as the weeks go on, some of things I'm going to make, the cool kind of give away things.  I think you guys are going to like them.

But anyway, I just wanted to let you know that I'm here and I'm doing okay.  And thank you, thank you, thank you!  And I think that's it for now.  So take care everybody and have a great weekend and I will talk you again soon.

This is Selena from the blog Oh My Aches and Pains!  One week down, 23 to go.  Woo hoo!

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Related articles

• Can You Help Me Get Through Hep C Treatment? (ohmyachesandpains.info)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

Me & Hep C: I Am Part of the Next Big Epidemic

Today I start Hepatitis C treatment.  Monday I learned that Hepatitis C (HCV) now kills more Americans every year than HIV. These two facts have inspired me to share a story with you today.  You already know I live with HCV, but what you might not know about is my personal connection to people living with HIV.

As I write this, I am realizing that in many ways this is really a story about life coming around full circle...

Helping Other People

Growing up, I always wanted to help other people.

For a while I thought becoming a doctor would be the way to do this.  When I didn't get straight A's in college, I shifted my focus to allied health professional careers and began to research a career in pharmacy.  Then I got cancer and my college studies got interrupted.

After I had the good fortune to beat cancer, I returned to school after a four quarter hiatus to finish my undergraduate degree.  I went back to planning for my future too.  Turns out, having cancer helped me discover the field of social work, which turned out to be a perfect fit for my childhood aspirations.

Facing Down Deadly HIV/AIDS

When I began social work school in 1990, I decided I wanted to work with persons living with HIV and AIDS.  Back then a lot of people didn't want to work with AIDS patients because of the stigma associated with this viral illness.  But I wanted to work with this group because I felt I had something to contribute since they were facing a lot of the same issues I had faced as a cancer patient. I strove to blend the knowledge from my personal experiences with my professional education to help make a difference in other people's lives.

This hard, challenging and important work really appealed to me.

I spent nine years working with people living with HIV.  I was there to witness the enormous change treatment with antivirals drugs made in 1995.  These new life-saving medications turned HIV infection from a progressive, life-threatening disease to a manageable, chronic illness.  With the new medications, my work became more about helping people figure out how to live their lives with HIV and less about helping them face their death because of it. 

Along the way, my clients taught me, pushed me and helped me evolve into one really good social worker.  For this I will always be truly thankful to them.

Now Hepatitis C is the New Killer

Today I know that Hepatitis C (HCV) kills more Americans every year than HIV.  Given my past with HIV and my present with HCV, that headline truly took my breath away.

First I got angry because:

• It's about damn time the medical community started understanding the true impact of HCV infection.  They know so much more about HIV than they know about HCV.
• It's about damn time more effort was put into a public health campaign to help people identify their risk factors and encourage them to get tested for HCV.  Look how well the public health campaign for HIV has worked.
• It's about damn time there are antiviral drugs for the treatment of HCV.  After all, antiviral drugs have been around since 1995 for HIV.
• It's about damn time the public understood the seriousness of the HCV epidemic and the toll it takes, in both lives and money, on our society. We all know how devastating HIV has been; why are we letting another virus do this to us again?

Then I took a moment to connect with my grief as I felt the impact of this news on me personally.  I am one of the 3.2 million Americans living with Hepatitis C.  But unlike so many others, I know my HCV status.  I know because I became sick with acute hepatitis after I contracted this infection.  Thankfully, this knowledge has informed a lot of healthy choices since 1988, choices I have made in the name of protecting my liver and doing what I can to prevent the progression of this liver disease. 

But even all these healthy choices haven't been enough to prevent HCV from quietly taking away pieces of my health over the past 24 years.

Coming Full Circle

Then I started thinking about my beloved social worker career, the one I was forced to give up almost eight years ago because chronic pain and fatigue disabled me.  I thought about my path leading to my social work career (which I described for you above.)  That got me wondering if someone today will be inspired by this recent news to seek out a career helping people living with HCV.  People like me.

The funny thing is, for years now, I have known that HCV was going to be the next big epidemic.  This recent headline finally confirms this.  Instead of an "I told you so!" moment, I can honestly say I was taken aback by the emotional impact this information is having on me. I feel shocked, overwhelmed and saddened by this news.

Most of all, I don't want to become a casualty of this war.  I don't want to be a HCV disability or death statistic.  So today I start Hepatitis C treatment secure in the knowledge that this is the right course of action for me right now.  And I'm giving this all I got because I want to beat HCV.  

Related articles

• Hepatitis C Now Killing More Americans than HIV (blogs.scientificamerican.com)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

The Health Care Games People Play: What Should I Do?

It's been a long week.  I attended a plethora of doctors' appointments this week so could be ready to start Hepatitis C treatment.  My week included painful procedures Monday and Tuesday and ending with frustration on Thursday when I learned the new neurologist I saw wasn't a good fit for my needs.  Right now I am tired, grumpy and beyond annoyed.

So take what I am about to say with a grain of salt.  Oh, and I have purposely not named names to shield myself from any venting fallout.

A Really Slow Process

One of the things that is really bugging me right now is how long it is taking to get my Hepatitis C treatment drugs.  I saw my hepatologist on January 10th and I learned from the support staff (see below) that he didn't write the prescriptions until January 20th.  Then it took my call on January 24th to finally get the prescriptions faxed to the pharmacy. 

Unbeknownst to me, my primary insurance information got deleted from the hospital computer system, so my prescriptions got sent to a private specialty pharmacy that bills Medicare, my secondary insurance.  I'm not sure how that happened, since I verify that information every single time I come in to see my doctor.  

Getting the Ball Rolling

As I mentioned above, I called two week after seeing my doctor since no one had contacted me like the doctor said they would.  During my first conversation with support staff, I got a "song and dance" about how it takes 2 to 3 weeks to get things going.  It was after that lecture that we got to the business of checking on the status of my prescriptions and discovered the deletion of my primary insurance information.  I then went on to inform the staff of the details of my prescription benefit coverage, which is a separate entity from my primary health insurance.

I thought we ended the discussion with the staff person saying my prescriptions would be re-routed to my prescription insurance's specialty pharmacy.

Confusion Ensues

A day or two later I got a call from the private specialty pharmacy saying that they couldn't find my Medicare drug coverage.  So I called them back telling them that Medicare wasn't my drug coverage and that I had private prescription insurance.  I told them the prescriptions were sent to them in error and were being re-routed to my prescription insurance's specialty pharmacy.  Then this past Tuesday, the private specialty pharmacy called me again wanting my private prescription insurance information.  I called them back once again explaining that the prescriptions were sent to them in error and asking them to please forward them to my prescription insurance's specialty pharmacy.

I then called the support staff at my doctor's office since I was getting the distinct feeling that things were not happening the way they were supposed to be.

Doing Things Their Way

Sure enough, the staff did not send my prescriptions to my prescription insurance's specialty pharmacy.  No, I was told that working with my prescription insurance was a "nightmare" and they would rather use this private specialty pharmacy than deal with my prescription insurance directly.  When I told them I called my prescription insurance and was told the Hepatitis C medications would only be covered if they came from their specialty pharmacy, I was told that I was given incorrect information.

Yeah, O.K., whatever.  I'm not going to argue.  I figured that their private specialty pharmacy would be told the same thing when they called my prescription insurance.  No sense in belaboring the point when it was clear the staff was persistent in doing things their way and perceived my phone calls as "getting more involved than I needed to be." 

Prescriptions from the Barrio?

I decided I wanted to learn more about this private specialty pharmacy the staff is so in love with.  So I Googled the number they called me from and the first link was to their website--which was down.  So I went back to Google to search the other name the staff used for the pharmacy and this is what I found on Google maps: 

My prescriptions are coming from "Rx Farmacia"?
Where is the front door?
And is that crime scene tape on the street in front of the pharmacy? 

Is it just me, or does it seem ________ (insert an adjective here) that a big university medical center rated "Best in the West" is sending my prescriptions for Hepatitis C treatment here?  And O.K., so I shouldn't judge a book by it's cover, but I certainly find it odd that this book's title is in Spanish.

What Should I Do?

In all seriousness, I feel incredibly uncomfortable with my medications coming from here.  I mean, I have seen other private specialty pharmacies and none of them looked like this.  I am praying the my prescription insurance gave me the right information and will deny coverage because I admit the look of this pharmacy conveys the messages "counterfeit medications," "money laundering" and "fly by night."

I mean, I hate to admit this, but based on appearances I trust my prescription insurance's specialty pharmacy way more than this place.  Plus I did some more research and discovered that my prescription insurance's specialty pharmacy can have my medications delivered to my local chain pharmacy location.  The pharmacy pictured above is in East Los Angeles, which is nowhere near where I live or could get to on my own.  So they have to ship my medications and I have to wait around to receive them so I can get them into the refrigerator ASAP.


This all begs the question: if you were in my shoes, what in the world would you do???

I can't wait to read your answers...

ADDENDUM: 6:01 am--After I posted this, I called my prescription insurance's specialty pharmacy and I am happy to report that they received my prescriptions for Hepatitis C treatment.  Not sure if they came from the private specialty pharmacy or the doctor's office; either way I don't care!  I am so pleased with this outcome!  I am now eagerly awaiting a call from Brittany who will facilitate the process.  Because I am worried about the "nightmare" comment (see above), the first thing I am going to do is ask Brittany to call me every time they need something from my doctor's office so I can keep in top of them.

Reader Questions: You Asked, I Answered

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I challenged you to Ask Me Anything and I'm glad you have taken me up on my offer. So today I want to answer some questions I have recently received:

Q. How do I get pain relief for chronic myalgia? My general doctor seems useless and can't find the cause. I've been to every specialist to find the cause. Do I have to personally schedule an appointment with a pain specialist?

A. I am fortunate enough to have the type of medical insurance that allows me to self-refer to a specialist. I have taken advantage of this option numerous times during both the diagnosis and treatment phases of my chronic pain conditions. If you don't have that option, don't give up and let your managed care health insurance stand in the way of getting the care you need. I suggest calling them if your doctor won't give you a referral and ask to speak to a care manager. You might also consider changing primary care doctors to see if another physician might be better able to address your medical needs.

Personally, I have seen specialists in many different fields, including neurology, rheumatology, rehabilitative medicine and pain management. Some I see on an ongoing basis; others consult and then ask my primary care doctor to treat me and follow-up on their recommendations.

While I agree that having your primary care doctor do the referring is the ideal situation, I have come to accept that primary care doctors don't always do this.

Honestly, I think you have answered your question for yourself when you asked, "Do I have to personally schedule an appointment with a pain specialist?" One way to look at this task is that it is burdensome, time-consuming and stressful. You can also look at it as taking a step towards actively participating in your health care and being your own health advocate.

I think it is reasonable to ask for pain relief from your doctors and I hope you find the answers and treatment options you are seeking. That said, I know from my own experiences that finding pain relief is sometimes a difficult, complex, perplexing and often elusive proposition. However, I have not given up hope that science will continue to discover what causes physical pain and, more importantly, what it takes to treat it fully and successfully.

Q. How do you deal with the sadness and or guilt that comes along with missing family or other types of social occasions? I find that's when it hits me the most. It's like my condition slaps me in the face. I would love to hear how you get through that.

A. Being a very outgoing and social person, this is a consequence of chronic illness I actively confront on a ongoing basis.

I have gone from feeling very sad and inadequate in my ability to be a good friend to accepting that I live life at a much different pace now which precludes a lot of social interactions. I'd like to say that I have processed this issue and have come to a place of understanding and peace, but the truth is my feelings on this subject can vary as much as the seasons.

In the end, what helps me the most is keeping these thoughts in mind:

• Socializing is an important part of my life.
• Socializing takes a lot of energy, both physically and mentally.
  
• I choose to actively manage my chronic pain and fatigue, which often means limiting my social interactions.
• I can ignore my need to limit my social interactions, but then I must be willing to live with flare-ups and a lower level of functioning.
  
• I can choose to be unhappy about my limited social life and steep in my grief and guilt.
• I can choose to relish the social life I can participate in and allow those moments to sustain me until the next social event I am able to attend.

I've also explored many new and different ways to connect with friends, family and others, like Twitter, Facebook, blogs, online forums and chats and Skype. Sure, they aren't the same as the social activities I used to be able to do when I was "healthy." But I have realized that comparing my current self with my past self prevent me from enjoying what I can do now despite my chronic illnesses.

So yes, chronic illness still does occasionally slap me in the face, but really it's just a reminder that I need to keep reframing my perspective on my current situation and focusing on what is possible so I don't miss out on what socializing I can enjoy.

Related articles

• Do You Need a Pain Specialist? (everydayhealth.com)
• Treating Fibromyalgia Pain: Medication Options (webmd.com)
• Patient Money: Treating Chronic Pain and Managing the Bills (nytimes.com)