Thursday, August 3, 2017

On Illness and Bravery

I randomly picked up my husband's most recent copy of Time magazine this morning to flip through while I was eating lunch. There was an excellent essay written by Josh Friedman, an American screenwriter, entitled, "It's OK To Be A Coward About Cancer." It grabbed my attention for several reasons: I am a 21 year cancer survivor, I currently spend every day battling an autoimmune illness, and I've been thinking a lot lately about what it means to be "brave" when struggling with an illness.

The essay starts off  with Mr. Friedman discussing Sen. John McCain's recent brain cancer diagnosis and the subsequent tweets from well meaning colleagues about how Sen. McCain should give his cancer "hell" as well as other encouragements to "fight." Mr. Friedman explains about how this "tough guy" narrative is "seductive" as it suggests we have control over our fates and that we can will cancer away. He continues on to explain that, "courageousness is a standard that no sick person should feel like they have to meet." Mr. Friedman then goes on to briefly explain about his own personal run in with cancer and how he dealt with it...

"Before the surgery I spent most of my time crying. Well, crying, rocking my son to sleep, crying more and then taking Ativan so my wife could rock me to sleep. When I woke up after the operation, the tumor was gone. But the feeling of cancer was still inside me. My body was now a sinister stranger. It had betrayed me; it had snuck up and tried to kill me. I would never trust it again.

I banned my friends from visiting and spent my recovery staring out a hospital window wondering if I'd ever see my boy grow up. In my more optimistic moments, I decided I should quit writing the scary-robot show before I'd actually started. It all seemed ridiculous and disconnected from my life. Besides, no one would be mad at me if I just stopped.

Not exactly a profile in courage.Not even in the most favorable of lighting."
                                                                         
 - Friedman, Josh. "It's OK To Be A Coward About Cancer." Time Magazine August 2, 2017: Pages 21-22. Print.

FINALLY.

Finally someone being real about the experience of illness.

I am going to preface the rest of what I have to say about this topic by clarifying something for those of you who may not know me in person. In general, I am a very positive and optimistic person. Sure, I have my moments, sometimes even hours or days of feeling sorry for myself but overall, I keep things pretty upbeat. And that is not by accident either. I work hard at it because I feel strongly that maintaining a positive attitude has a profound positive impact on my physical symptoms.

However what I have been learning about myself lately and I suspect that this is true for many other people, is that I spend a lot of time and effort being "strong" or "brave." I did so 21 years ago when I went through cancer treatments and I do so now battling Sjögren's syndrome. It is what is expected of those of us, living in this society, with a life threatening or chronic illness. Being strong and courageous is what you're supposed to do and being weak is just not acceptable.

You'll get through this; you're tough.
You have to stay positive.
You can't let this thing beat you.
Stay strong.
You're so brave, I could never do what you're doing.
(By the way, bravery has nothing to do it. Those of us with illness have no choice in the matter).

Those of us waging the daily battle against a chronic and/or life threatening illness hear these messages every day. We hear them in the media, from our healthcare providers, and especially from family, friends, coworkers, and everybody else in our social network. What are we supposed to say in response to these well intended words of support? We know that all these people (well, except for the media maybe) have our best interests at heart. They love us. They want to do everything they can to support us. They mean well.

In all honesty, people who are going through the battle every day DO need to hear some of these types of messages. But we also need to hear that we can be honest with our feelings about being sick and that we are accepted as we are, even if we are not feeling strong or brave. We need people to lean on and to hear our fears and anxieties.  We need to meltdown. We also need to hear things like:

This must be scary for you.
It's OK to cry.
This totally sucks, doesn't it?
You don't need to keep on a brave face for me.

Most importantly, we need people to bear witness to our experience, all of it.

As Mr. Friedman writes in his essay, "Because when we glorify strength without showing empathy for weakness, we end up with a toxic version of heroism, one that links bravery to goodness and cowardice to getting what you deserve."

- Friedman, Josh. "It's OK To Be A Coward About Cancer." Time Magazine August 2, 2017: Pages 21-22. Print.

Mic drop.

That's the thing. Dealing with an illness is not black and white. It is this journey where we may have days of thinking we can overcome all the obstacles being hurled at us and other days where the whole situation looks hopeless. Most importantly, there are even more days where we fall in between those two extremes.

Despite all my medical issues over the years, I also used to struggle with how to speak to someone who had a significant medical issue. As a nurse, I could easily speak with with my patients and their families going through catastrophic illnesses but with those in my personal life going through the same thing? Not so much. It was scary. I didn't want to say the wrong thing. What if I upset them? What if I said something stupid? What if I made it worse?

Then last year, all of that changed. I had a close friend whom I had been friends with for 30 years. And, I'm only 46, so that is a long time. He had been diagnosed with Stage 4 colon cancer two years previously and things were not looking good. I had been spending time at his home. During one of our conversations I blurted out to him (because we'd been friends for a long time and I could blurt out anything),

"Shit, this must be really scary for you."

If you want to know what it is like to enter a sacred space with someone, a truly sacred space where you put aside your own insecurities and fears in order to be fully present for someone, acknowledge the fact, out loud, that they will be dying soon.

Don't run from it.
Please don't.

Because of all the things I have done in my life, that moment, and all the moments that immediately followed where my friend was able to open up and express all his fears and sadness about leaving his family, his children's future, and his fears about the process of dying, not only helped him, but forever changed me and the way I go about supporting other people with illness.

I never told him to be strong that day.
I never told him how courageous he was.

I just gave him permission to be human: to cry, to be pissed off, to be scared.

Since that experience, I have had several other instances where in trying to support someone with an illness, I have tried to not use the courage/strength narrative that so many of us with illness hear all the time. And I have to say in doing so, I have not yet had a negative experience or an experience that made me wish I had said or done something different. I am certainly not proficient at it yet. Just recently, I feel like I very much dropped the ball by focusing so much on the "being strong" narrative that I was not fully present to hear what someone was trying to convey to me. It's not an exact science really, but rather a work in progress.

You, too, can give others permission to be human during times of illness.
Sometimes it's awkward.
Sometimes it's scary.
You just have to be brave.




Tuesday, July 11, 2017

Prescription Drug Coverage Tips




I'd like to share a little story with you. It serves two purposes. The first being I get to sound off about this issue because well, isn't that why people blog? OK, just kidding. The real reason I am taking the time to write this is because I have some important information to share that I think some of you may find useful.

After being diagnosed with a blood clot in my leg in 2004, I was tested for several different clotting disorders and found out I had a genetic blood clotting disorder called Factor V Leiden. Then in 2012,, I was also found to have two small blood clots in my lungs. Technically someone like me is supposed to be on blood thinners forever. Why I don't take blood thinners regularly is a long story for another day. Actually, I think I may have told the story already. I've been blogging for a while and I lose track of my topics.

My medical plan is that under certain circumstances, I have to take a blood thinner injection called Lovenox. For example, I flew to Ireland last summer and had to take an injection before each of my six hour flights. No biggie.

About two weeks ago, I had surgery on my ankle. It was a big deal kind of surgery in that I cannot bear any weight on my left leg for 6-8 weeks. That is a blog story to be told all in itself which I will get to soon, I promise.

Because of the non-weight bearing status, I was prescribed Lovenox injections every day for the entire 6-8 week period. My risk of developing a blood clot after surgery was (is) substantial. The injections for me are no big deal. I'm a nurse, I've done them before, and it is just a part of the plan for me anytime I need orthopedic surgery.

The day of my surgery was long and tiring. Not to mention stressful. The hospital is two hours away. We had to be there at 6am and I think we got home around 1:30pm. My husband dropped off my prescriptions at the pharmacy. About two hours after I got home, the pharmacy (CVS) called to talk to me about the Lovenox. They wanted to check with me about filling it because the insurance doesn't cover it and it was going to cost me $550 for a six week supply.

$550.
Let that sink in for a minute.

That can't be I told them. It must be covered. I have to have this medication. There was nothing they could do I was told.

So I'm still messed up from the general anesthesia and I call my prescription plan, Aetna. I have the Aetna through Medicare Part D. They tell me that the issue isn't about it being covered. Aetna does cover Lovenox. The problem was that it was a Tier 5 drug AND I was in the donut hole for Medicare.

For those of you who don't know what that means, the donut hole is the point in your Medicare prescription plan where you have to start paying a much larger portion of your own medications until the total cost of your medications reaches a certain amount. It's much more complicated than that, but that's the gist of it. I'm very careful about avoiding the donut hole and this is the first time I've gotten there, likely because of a VERY expensive, new eye drop for Sjögren's that I tried this year. The eye drops were a bust and now it was a bust for my prescription benefits as well.

I told the Aetna representative that this was ridiculous. If I didn't have this medication, I could die.

I COULD (LIKELY WOULD) DIE.

I asked her if there was anything I could do.
Pay attention here.
This is important.

She said I could have my doctor's office call Aetna and request a tier exemption. If it was approved, I would be refunded the difference by the pharmacy,

I've been a chronically ill patient for quite a few years and I had heard of this. I know that if you need a medication not on the plan's formulary, your provider can apply for an exemption and get it approved, but I did not know about this tier exemption business. Very good to know.

I got off the phone and called my doctor's office requesting that my provider call Aetna and request the tier exemption.

Meanwhile, the pharmacist from CVS called me and told me that if the doctor changed the prescription, I could save $200. What?!? This is my second important point in this blog...

Apparently the doctor ordered a 0.6ml syringe but I needed to only give myself 0.4 ml. This means that I would just adjust the syringe before I gave the injection and waste 0.2ml. The pharmacist told me that they medication comes as a 0.4ml syringe and that is why I would save so much money. He told me he had already called my doctor's office and requested the prescription change and would hopefully have it for me that evening. So my husband and I decided that we would pay the $350 and just pick up the syringes so I could start the medication.

It is SO important to have a relationship with your pharmacist. Mine has known me for years and I truly think he has my best interests at heart. I never would have known about the syringe dosing. It's obvious from this experience the importance of advocating for yourself in regards to medication prices. Ask your pharmacist if there is an alternative available. In my case here I got the same medication and the same dosage just by somebody paying attention and knowing the medications.

I got my medication. My doctor called Aetna as requested and the tier exemption was approved. I was psyched! I got a letter from Aetna confirming the tier exemption. It didn't say what the new tier was but I dropped it off at the pharmacy. i called the next day and asked them to run it through for the refund.

It wouldn't go through.

The pharmacist called Aetna again and he was told that I wouldn't get a refund because I was still in the donut hole. He then explained to me that right now, it doesn't matter what the tier or my resulting co-pay is because I am paying the donut hole price for my medication now anyways.

Duh, of course.

Between the lingering effects of the anesthesia and the heavy doses of pain medications, it slipped by me that this was the case: there was no way I could get money back right now. Ten days of going back and forth with Aetna, my pharmacy, and my doctor's office for nothing. And I only went through all that for the tier exemption because somebody at Aetna told me that was what I needed to do to pay a lot less for the Lovenox.

I did call Aetna and spoke with a supervisor and explained what had happened and that I was upset that while I was recovering from surgery, I had to deal with all this (for ten days and with at least seven phone calls) because their reps are not well informed or knowledgeable about how prescription benefits work. I was told the issue would be addressed. And then, I let it go.

I am going to spend some of my recuperation time this summer comparing Medicare Part D prescription plans so when open enrollment comes in October, I can make a switch if I can find a better plan to suit my needs. In 2017, some of my prescription co-pays have skyrocketed, several of them have a copay price 3x higher than 2016. Maybe this is across the board and I will find there is no better alternative for me, but I have to at least investigate the possibilities.

This whole situation scared me though. I am on disability. I work very sporadically and when I do, it's not a lot of hours. I am fortunate in that I have a husband who works full-time and makes a good living. I also have a family that I know would never have let me go without this medication. But there was a time that I was single, on disability and not able to work at all. I could not have afforded this medication without help from my family.

So what happens to all the Americans out there who need life saving medications like this and don't have a husband with a job or a family to go to in crisis? I know people in this situation. And I will tell you, they don't need that burden on top of already having a severe, chronic illness. Just some food for thought.

I hope this was helpful.
Remember, be informed and ask questions!

Saturday, February 11, 2017

Chronic Illness and Fear


Photo Courtesy of Myers Creative Photography

I had this huge revelation the other day and I am sharing it with you because I would bet money that some of you have experienced very similar feelings.

The back story is as follows:

For about a month, I haven't been feeling right and in a way that feels different than "just Sjögren's." As I blogged about earlier this week, my main debilitating symptom has been fatigue. Now fatigue has been a Sjögren's symptom for me since day one, but this has been even more over the top than usual.

I recently increased one of my thyroid medications (I have hypothyroidism from radiation treatments I received for cancer in 1996.) and was wondering if my levels were totally out of whack. I had them tested earlier this week but I have not received the results because this is the one specialist I have left that just cannot get their act together enough to get me results in a prompt manner; last time it took almost four week...ridiculous!

In addition to the fatigue and thyroid checking, I was working a little more than usual and I work in a school. Every single germ known to mankind was circulating through each of the three schools I work in and next thing I know, I was down for the count about two weeks ago and instead of getting better, I got much worse with a respiratory infection, fever, the list goes on and on. And I just couldn't bounce back. I finished a round of antibiotics and now am on day four of a higher dose of prednisone for my lungs (I have autoimmune related respiratory issues). Yesterday was the first day I was able to leave the house on my own and actually participate in the world.

For a few years now I have been seeing a therapist to help me deal with having a severe chronic illness. My main reason for starting to see her was to help me find more balance between my illness life and the rest of my life, especially in my relationships. She has done that and so much more. However I had not seen her for about a month and I finally got back in to see her a few days ago. I was a bit of a mess. I was totally overwhelmed with not only my Sjögren's symptoms and issues, but the current respiratory/flu/cold junk I had as well. I was especially worried about the fact that I could barely move my body from the bed to the bathroom. It took me hours that day just to drag myself to the car to get to her office.

I was freaking out about how sick I was, more so than I thought was appropriate at the time. I mean seriously, EVERYBODY in all of western Massachusetts has been sick, I was no exception. Granted yes, I have underlying issues that can make things like a cold or flu much worse for me, but still. I was getting really nervous that I couldn't just bounce back.

So my very rational therapist pointed out to me that yes, there's a lot of illness going around but also that it takes time to recover from these colds, flus, respiratory infections, etc. And that maybe, I have been feeling so poorly over the past month because like everyone else, I have been hit hard and need whatever time it takes to heal and recover.

Now this seems like common sense and it is,and that is when I had my revelation.

I was scared.

Because I was sick for a more prolonged period of time than usual, I was scared that it wasn't just a typical "you will get over it" type of winter illness.

No, I was afraid that THIS would be my new normal.

Why would I be so panicked about such a seemingly irrational thought? Tons of people get sick in the winter.

Because in 2008, this IS what happened to me.

In 2008, I went from a fully functioning 30-something to a disabled, out-of-work 30-something in about a month. Because nobody knew what was wrong with me at the time, I truly thought I was dying. Life as I knew it completely changed in every single aspect: my job, my home, my finances, my marriage, my sense of identity, and especially how I perceived myself. I went from working as a full-time nurse to working as a full-time patient. Almost everything was taken away from me.

I realized that all this current business was all about FEAR.

I was basing my current thoughts about how I physically felt on my previous experiences, rather than on the reality of the current situation.

I don't know about the rest of you, but fear has been a common theme interwoven with having a chronic illness like Sjögren's, and the numerous other health issues that plague me as well. And I have to tell you, fear is a bitch. I have been working hard to get through those fears over the past year or two: fear of getting sicker, fear of losing my disability or health insurance, fear of becoming totally incapacitated, fear of traveling...what if something happens while we are away?? Fear of losing more friends...fear of never being able to support myself again...I could go on and on. But this realization that I was now afraid of a typical winter respiratory illness and the symptoms associated with it being my "new normal" threw me off a bit because until that moment in the therapist's office, it never dawned on me that was why I was so upset.

Here's the thing though and I wholeheartedly believe this. Once you realize your fears AND acknowledge them, you are halfway to defeating them. By recognizing them and facing them head on, we can slowly begin to master them. For me, in addition to therapy, meditation and yoga has been helpful. Meditation because it allows me to clear my head, as much as possible, of the constant stream of racing thoughts and worries I often have. Yoga because it helps me gain some control of my body, breathing, and thoughts. Yoga, shows me what my body is capable of and therefore lessens the fear of my own body.

I would be interested in hearing about what fears you may have associated with living with a chronic illness and how you deal with them, if at all.

 Feel free to comment below...

Tuesday, February 7, 2017

My Sjögren's World

It's been a while since I've done a Sjögren's blog update. That is both a good thing and a bad thing. Good because it means I have been somewhat successful in putting some mental distance between me and this life altering illness, but it is also bad because I am a firm believer in connecting with other Sjögren's patients and sharing our insights into how to live as well as possible with Sjögren's.

Recently, I was asked by the Sjögren's Syndrome Foundation to be part of a group of Sjögren's patients piloting a new patient website message board. I have checked out other patient message boards, Facebook groups, etc., but I have only really found myself connected to one other particular Facebook group called Sjögren's Sisters (if you need help finding it, send me an e-mail or message me on Facebook). So, I was really curious about this new project.

I enjoy doing volunteer type stuff for the SSF, but oftentimes I run into problems with committing physically to projects. Kind of ironic, isn't it? You want to help the non-profit that does good for your illness, but your illness holds you back. But this project is time limited and I never have to leave my couch or bed to help with it. That's a win for me!

The project has linked me up with eleven or so other Sjögren's patients and we exchange information regarding living with our illness and the various challenges that come with that. It's such a great resource. We are still in the trial phase and once we go live, I will definitely share the information on this blog, so stay tuned.

The project couldn't have come at a better time for me. Sjögren's has been overwhelming me lately. My body has been overwhelming me lately. And by lately, I mean for about six months. I am experiencing so many symptoms lately and I don't even know for sure which are autoimmune related and which are not, although my guess is, most of them are related somehow, some way. Because of all the symptoms, I have had to cancel out on commitments a lot more than usual and while I can be a homebody as much as any introvert, I am spending way more time at home and in bed than I would like. Isolation can be a killer for sure.

So this is what has been going on lately in my Sjögren's world:

Last April my rheumatologist and I decided to try a medication called Orencia. For those of you who don't already know this, Sjögren's syndrome does not have a cure. It doesn't even have any treatment designed to treat it. Instead we have to depend on medications used for other autoimmune illnesses and then pray and hope that we will be lucky enough to have one of them help us.

Orencia (abatacept) is a biologic medication often used to treat RA (rheumatoid arthritis). RA and Sjögren's have several symptoms in common. For me, the symptoms I needed the most help with at the time were joint/muscle pain and fatigue. I had to get an insurance prior authorization to do the injections at home, but then we found out that my "copay" was going to be $1500/month. $1500!! We then decided that I would drive the four hour round trip to Boston every month to receive an IV infusion of Orencia instead. Cost to me: $30 for gas, tolls, parking, and water. After the first few months of doing this, my local pulmonologist agreed to oversee the infusions at my local, community hospital so thankfully, my commute has gone from four hours round trip to one hour.

I am very medication sensitive. Right after the end of my first infusion, I did have a minor reaction but since then I have had no adverse effects. This is highly unusual for me so I was determined to give this medication a fair shot.

I did notice some improvement about three or four months after starting the infusions. However in the past few months, I have been on and off the fence about how well it works for me. When I saw my rheumatologist right after Christmas, she thought it was helping because my joint swelling was pretty much gone, but I had also just finished three weeks of prednisone so it is hard to say for sure. I do think on most days, Orencia has helped with some of my joint pain, especially in my fingers, wrists, elbows, knees, and toes.

It has not helped my fatigue though and that is where I am really struggling right now. Fatigue has always been a struggle for me with this disease, but I cannot believe how bad it has gotten recently. At the moment, I do think some of it can be attributed to a respiratory infection/cold that I am trying to recover from, but it is definitely more than that. I am not exaggerating when I say that I have to mentally talk myself through even the most basic of tasks because my body just doesn't want to move. Showering, cooking, even getting from the bedroom to the bathroom to brush my teeth before bed. It's not than I am necessarily tired and want to sleep all the time. It's more like my body is stuck in quicksand or I am constantly trying to swim upstream...the entire day that I am awake. Every task and movement is me mentally rallying myself to just get up and do it; convincing myself that nothing can keep me down. But the reality is, I am down. There ARE times where I just can't do it.

The biggest problem with this?

The less I am out in the world and the less I can do, the more I struggle with my mood. It's a known fact that people with chronic illnesses have higher rates of depression and so while I am fighting every minute of the day to work through the fatigue, I am also fighting to keep myself upbeat and optimistic.

Muscle pain, dry eyes, dry mouth, nose sores, headaches, and peripheral neuropathy-like symptoms (foot pain) are a daily occurrence lately. The esophageal motility disorder that showed up a few years ago, and then went away, is showing signs that it might become an unmanageable problem again, but I can't bear the thought of making yet another doctor's appointment in Boston. So instead, I try to eat foods that are easier to swallow. This week I go to Boston to get my salivary and parotid glands expressed and a few weeks after that, ultrasound of my shoulders because for some reason, they have been getting more and more painful.

I haven't been able to sit without being in a lot of pain since August and since December, that pain has progressed to my rectum and you can only imagine what kind of havoc that has wreaked on some of my bodily functions. Originally it was thought that it was an orthopedic issue...nope. Then a gastroenterology issue...nope. Well, at least that is what I have been told. I'm not 100% convinced of either. So now it has been brought up that maybe it IS a Sjögren's related issue after all, specifically a sacral neuropathy. As I write this, I am awaiting a call back from a neurologist in Boston who specializes in these things. I don't know if he is going to have any answers. Meanwhile, I keep upping my meditation practice to try and deal with the pain and the anxiety over the fact that the tailbone issues may NEVER go away. By the way, if any of you have experience with that, I would appreciate hearing about your experiences and what helped you, if anything.

So what's a girl to do? It's like any adverse situation: you fight or you give up. I'd like to say that giving up is not an option, but we all know it is. Luckily for me, right now, it is not. And honestly, oftentimes the only reason that it is not an option is because I know how much I am loved. And I know that I still have work to do in this world; work that is important. In terms of giving up on dealing with my illness and symptoms, that is not an option either. I know that Sjögren's can be progressive and I am only 45...that's a lot of years left for things to get worse. So I need to be as on top of things as I can. I will be honest, lately I have thought about what it would be like to just stop all my medications, all the painful procedures, and all the appointments, but like I said, I am loved and I have important work to do.

For my physical body, I employ as many complementary treatments as I can afford and which work. Yoga, massage, exercise, diet, and meditation are the biggies that I can think of. Even if I sometimes feel that these treatments don't help me physically, they always help me mentally. There is always the option for me to start up yet another course of prednisone, but I am trying to avoid that as long as possible.

My answer right now is to do the best I can. I work as a substitute school nurse and when they call, I try to go into work as much as I can because at the end of the day, I am more than a patient, I am also a nurse and a pretty good one at that. Yes, it's usually hell getting through the day and yes, I feel like death after work, oftentimes for days, but I know that for me, work is a necessary part of trying to normalize my life, even if it is only for a few hours or days a month.

I try to put myself in situations where I am helping other people. I volunteer for the American Cancer Society, the Sjögren's Syndrome Foundation, and my church. Sometimes that means going for months without being able to do anything to help at all, but doing whatever little good we can do in this world is so much better than doing nothing at all.

I work very hard at trying to appreciate what I do have and what is going right in my life. It may not look how I envisioned it to look in some aspects, but in many other aspects, life has turned out so much better than I thought. So I am going to keep trudging along and no matter what, always keep the hope.