And the saga continues with yet ANOTHER ridiculous addition to the mess up list.

I found out today that they were trying to get THE WRONG MEDICATION approved!  I just can’t believe it.  I have one of the best rhematologists in the country and his office is totally incompetent.

Now I have to wait ANOTHER week to find out what my insurance says about this medication.  I just don’t know what to do to make them do their job right.  Besides calling constantly which I am already doing.

It takes all my patience not to let this wear me down.  But I can’t let it.  I have to save my energy for getting better.

Just now my GI doctor called me on his own accord to check in to see how things were going and if I had managed to get the medication approved.  That made me feel better.  It’s an amazing thing as a patient to find a doctor who goes out of his way to advocate for you so you aren’t always stuck doing it yourself when you are sick.  He is one of those gems of a doctor.  Good to know at least one of them is looking out for me and willing to help me smooth this whole mess out.

I guess I just have to learn to take the good with the bad…  because tomorrow I start again.

April is Sjogren’s Syndrome Awareness Month, and since it is currently my main diagnosis I thought this would be a good opportunity to explain more about what it is and what living with it is like.

Most people I encounter have never heard of Sjogren’s (pronounced “show-grins“).  It’s hallmark symptom is extreme dryness – mainly of the eyes and mouth.  I’ve had severely dry mouth my whole life.  As a child, before I was diagnosed, I would constantly complain that food was too dry.  I would try to swallow it and it would stick to my mouth and I’d feel like I was going to choke on it.  At the time, it got me pegged as a picky eater.  I wasn’t diagnosed until I was 23.

My Autoimmune Pancreatitis, Autoimmune Hepatitis, and neurological problems are also complications that can come with Sjogren’s.  Combined they’ve caused me the most problems ranging from not being able to eat for months at a time to temporarily losing the ability to move my legs.  I’ve spent months in the hospital from these complications of Sjogren’s.

Below is an excerpt from the Sjogren’s Foundation website.  Please visit them for more information.

From the Sjogren.org website:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.

About half of the time Sjögren’s syndrome occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma. When Sjögren’s occurs alone, it is referred to as “Primary Sjögren’s.” When it occurs with another connective tissue disease, it is referred to as “Secondary Sjögren’s.”

All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important — they may prevent serious complications and greatly improve a patient’s quality of life.

Since symptoms of Sjögren’s syndrome mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s syndrome. Patients need to remember to be pro-active in talking with their physicians and dentists about their symptoms and potential treatment options.

Since the disease was first identified in 1933 by Dr. Henrik Sjögren, it has been proven to affect virtually every racial and ethnic group. General awareness about Sjögren’s syndrome is still lacking and increased professional awareness is needed to help expedite new diagnoses and treatment options.

Please take a moment to share this with a friend, twitter about it, and etc. to help raise awareness about what Sjogren’s syndrome is (the buttons at the bottom of this post make sharing with different sites like twitter easy).

So I finally found out what’s going on with my Rituxin and the insurance…

I called my doctor’s office again today because again no one called me back after last time.  They finally were able to tell me that after TWO MONTHS of waiting that it wasn’t covered by my primary insurance.  I couldn’t believe it!  I asked about my secondary insurance – Medi-Cal.  Apparently they didn’t even remember I had Medi-Cal, so they were trying to get me patient assistance from other sources.

I got off the phone with them, and, like I said, I REALLY just didn’t believe it wasn’t covered.  So I followed my instincts.  I called my insurance to hear it for myself.  And 30 minutes later I had an answer.  Guess what?  It IS covered!!!  Not under my pharmacy benefits but under my medical benefits since it is a medication you have to get as an outpatient in a hospital.  AND I don’t even necessarily need to get it preapproved!

I am so SO mad.  I was waiting around for two months to get a wrong answer from my doctor’s office.

There is NO REASON that something like this should happen.  And I’m sure I’m not the first one!  It makes me so angry on behalf of all the people who don’t have the knowledge, inclination, or ability to advocate for themselves and take matters into their own hands.

There is NO REASON that sick people should have to jump through such hoops to get the care they desperately need.

There is NO REASON I should have to wait and suffer while my doctor’s office stumbles and fumbles and won’t call me back.

There is no reason and no excuse.

So now I’m waiting again.  Waiting for next Wednesday when the infusion nurse will be in.  She’s supposed to call me back, so we can rectify the situation.  I’m not counting on it.  So I’m waiting for Wednesday so I can call her.  At least now I know what I going on.  I know all too well.  And this novel patient isn’t happy about it.

The waiting game continues and there is no reason for it.

So I’m supposed to be starting a new treatment – Rituxin infusions, and I’ve been waiting for the insurance to approve it.  And waiting.  And waiting.  And waiting.  Waiting for TWO MONTHS now.  Calling every week or so.  Having no one call me back.  Called again today and was told the person I need to speak to will be there tomorrow only, so I have to call back then.

Do you find this shocking?  I don’t.  This is pretty much par for the course.  And as ridiculous as it is, I’m sure I’m hardly the only one going through this kind of thing.

So I wait.  I wait while my joints swell to the point it hurts to type this.  I wait while I become to tired to do even the few things I had been able to do.  I wait while my numbness gets worse.  I wait and wait and wait.

Being chronically ill is in itself a waiting game.  If its not waiting on insurance, it’s waiting on a medication to start working or a side effect to go away or for test results to come in or to get in to see a specialist.  Waiting to get better.  Waiting to start my life again.  Waiting to be productive again.  Waiting to go out again.  Waiting to have a social life again.  Waiting to look like myself again.  Waiting to feel like myself again.  Waiting.  Waiting.  Waiting.

Did I mention that I’m not a patient person?