Thursday, August 20, 2020

New Medication Attempt

 


During my last rheumatology visit, telemedicine style of course, my doctor and I talked about what options are left for me in terms of treating Sjogren's. By the way, we officially call it Sjogren's now, and NOT Sjogren's Syndrome. I can get into that at another time.

I've been at this for twelve years now and have gone through a gamut of medication trials. The biggest issue is that there is no cure, or even a targeted treatment, for Sjogren's. Our rheumatologists do the best they can with medications used for multiple other autoimmune diseases, but we desperately need a treatment targeted for our disease. We, as patients, do the best we can with symptom management, diet, exercise, alternative medicine, and self care.

The whole medication treatment issue for Sjogren's is much too long to get into in this post, but let's just say, it's a crapshoot at best. For me personally, I take a medication called Plaquenil (also known as hydroxychloroquine...you have all heard of that one!) and Evoxac. The Plaquenil is supposed to help my symptoms. I'm not sure how much it does, but I have tried weaning off it without much success and on top of that, it is supposed to help slow down disease progression and that is very important. Evoxac is a medication I take several times a day to stimulate saliva flow because Sjogren's attacks the saliva glands and there are numerous complications associated with that, most of which I have had at one time or another. I have lost a lot of function in my salivary glands.

Besides those two medications, I rely on prednisone, which is a steroid, when I absolutely have to. Long term prednisone is dangerous and since I require high doses of it, it's not a sustainable long-term solution. Typically, I go on a course of it one to three times a year. I did make it a year and a half without it once.

At my last visit, we decided that I should go on a round of prednisone. It was a little nerve wracking because of the COVID situation, but the numbers in my state were down and I felt like it was the best time to try and quiet things down, especially because my level of functioning had decreased significantly since Fall 2019 and we don't know what this Fall will bring in regards to COVID.

During my appointment, my rheumatologist also mentioned a medication called Sulfasalazine. It is classified as a DMARD (disease-modifying antirheumatic drug), which is also what Plaquenil is. However, it appears that they work on two different pathways and one article I stumbled upon mentioned that the two together could be more effective than either alone.

Part of the issues I have in managing my disease is that I cannot take any NSAIDs, including Motrin, Celebrex and others due to a history of gastritis (which can occur in Sjogren's patients), and stomach ulcers, which are a consequence of the NSAIDs. I do take a medication called Tramadol from time to time for my pain, but I have been asked by my gastrointestional (GI) team to not take these medications as they can cause some GI issues and worsen others.

The part that threw me off when my doctor mentioned this medication is that nobody had ever mentioned it to me before as a possible treatment. It is often used in patients with ulcerative colitis and rheumatoid arthritis. I distinctly remember administering it to my pediatric patients with ulcerative colitis when I worked at a children's hospital. Anyone who follows my blog, or knows me in real life, knows that I have a very extensive working knowledge of Sjogren's. I keep up-to-date on treatments, research, all of it. I will admit though that over the past year or two, I have been working hard at trying to shift my mental focus from thinking about Sjogren's all the time and have not kept up as much as I used to. However I thought I knew about all the medication possibilities. This goes to show you how important it is to be an informed patient.

From what my doctor said, it is not a medication that is often used for Sjogren's. Her main concern was that it has several potential GI side effects that are exactly the same symptoms I went through hell with for two years, and finally got under control at the end of last year.

I decided I would see how the prednisone course went and meanwhile, I talked to a few Sjogren's patients. Some of them had positive results with it, some have not, and many reported side effects. Sometimes the GI side effects are temporary and the risk can be lessened by starting the medication off slowly, meaning lower doses and at a lower frequency. Because it is a sulfa drug, there is also a risk on an allergic reaction, but I've taken enough sulfa drugs to not be very concerned about that.

I also decided to have a conversation with my GI team, whom I trust implicitly. They agreed with my rheumatologist about the potential GI issues, but compared to taking the NSAIDs, Celebrex, and Tramadol, they thought it was the best of all options to go with, if I could tolerate it. Of course, it's expected I will report anything unusual that may occur.

I did my online research and read about the side effects, the blood work that needs to be periodically drawn, and the fact that it can take two to three months to see any positive benefits. The decision was made to start it now, while I'm still doing well on the prednisone, to give the medication a head start to work.

I have to be honest, I was nervous about it. I think the main reason I was nervous about it is because of the possible GI side effects AND the fact that it has been FOUR years since I have tried a new autoimmune medication. Plus, I am very sensitive to medications, supplements, all of it. I prayed about the decision quite a bit and found peace in knowing that in my decision making process, I have kept doing the next right thing...the MD discussions, the research, and talking to patients. Now, it's all up to God and paying attention to my body.

I believe strongly that at this point in my journey, I have too much to lose to NOT try it. I have the bottle here at home with me now. It has to be taken with food, which is going to be a huge challenge since I do intermittent fasting, but for now, it's only once a day, and that I can manage. I was going to start it today but then realized that I have to go to an appointment this afternoon and I don't want to introduce a new medication into my system without being at home. So, tomorrow it is.

I do hope the medication helps and that I tolerate it. I have some hope, but I'm also very realistic. And if it doesn't work, or if I have to stop it because of side effects, I'll just keep trying to move forward.

Sunday, August 16, 2020

Returning To My Gift

It has been almost two and a half years since I've written in this blog. It has been the same amount of time since I've really written anything, except for Facebook posts and greeting cards. These facts do make me sad.


For those of you who know me, and to inform those of you who don't, writing had long been my passion. I started writing this blog regularly after becoming ill, losing my job, and going on disability. I had always enjoyed writing, but once I had hours upon hours of free time to fill up, I realized that writing was not only an outlet for me, but a way that I could help others through what I was experiencing and learning in my chronic illness journey.

This blog mostly started off because of my health journey but it became so much more than that, hence why I titled it Thoughts and Ramblings on Life, Love, and Health...a title that I am actually considering changing, but that would make complications for me since the blog title is on my book. The jury is still out on that!

I started this blog in 2010 and was very dedicated to it.The more I wrote about chronic illness and autoimmune disorders, mostly Sjogren's, the more I heard from other patients about their experiences. It was at that time that I felt moved to get word out into the world about how much Sjogren's was misunderstood and misdiagnosed. So I spoke with many of the patients I had come to know and their stories gave birth to my first and only book, Tales from the Dry Side: the Personal Stories Behind the Autoimmune Illness Sjogren's Syndrome.

Several years after the book was published, I stopped writing, completely. People asked me why I wasn't blogging anymore and I kept telling them I had lost interest. And when I told people this, I meant it. I had absolutely no desire to write or put my thoughts and feelings out into the world anymore.

Deep down, I knew there was more to it than that. For example, my last blog entry before today was a story about my dog, Molly, who was like a child to me and died at the age of 15 years old. Her death, and my post about her death, absolutely wrecked me. 

After her death, I had several painful surgeries, followed by long recoveries and we almost lost one of my stepchildren. Shortly after Molly died, we were in a position where we needed to take in another dog, who was not living in good circumstances, and desperately needed a home. That dog, Foxy, subsequently suffered many serious health issues during a majority of her time with us and ultimately died a short two and a half years after we took her in. 

A relative passed away, my health deteriorated, and I made a major decision to leave a church I had been a longstanding member of and I not only changed churches, but went to another church home that was in most ways, the opposite of where I came from. And, I did this alone, meaning without my husband. I guess in many ways, I felt the need to turn inward, to self protect, and to be in survival mode.

However, not too long ago, there was a week where on three separate occasions, the topic of finding and recognizing my spiritual gifts came up. I think the first time might have been during a sermon at church. We're in a pandemic. I lose track of a lot of things! The second time was definitely during a church related class that focused on finding and using your spiritual gifts. That grabbed my attention like a lightning bolt. The pastor was talking about worksheets we were given that would help us find our spiritual gifts. Immediately, writing came into my head. While I do believe I have other spiritual gifts given to me by God, that was the one that overtook my brain. and it was in that moment that I realized how much I missed writing and how much I was wasting this God given talent...not because I'm some amazing talented writer who has perfect grammar and what have you, but because I write in a way that makes people think and more importantly, helps people.

The third thing that happened in that span of time was that my therapist asked me during a session why I don't write anymore. I explained to her about not having the desire to write, etc. But then something in me stirred and I knew I should share with her how I had been feeling about the writing issue. So, I finally did.

Because let's be honest, it wasn't about not having the desire to write. My therapist and I had some good conversation about this and all the underlying junk that went with it, a lot of which I mentioned above. She encouraged me to not worry about blogging and just write for myself and eventually I did, in a journal. I found this process helpful in identifying much of what was holding me back: thinking I wasn't a good enough writer, feeling "less than" compared to other writers, being sick of hearing about, and writing about, Sjogren's, for so long feeling too vulnerable to put myself out there, and the fact that the person (and hence, writer) that I am now looks quite different compared to the writer I was over two years ago, especially from a spiritual perspective. I was afraid of judgment. There's this big part of me that wants to write about my faith and Jesus, but I'm so afraid of getting it wrong.

So I spent a lot of time in prayer about all this and I did more journaling...just for myself. I had never written for myself; it was always for other people. What I came to realize is that the gift of writing that I have been given is not for me to ignore or take lightly. It is a gift to be used and shared. I don't need to beat myself up over the time I didn't use this gift; it was a season. But now, it's time to move on to a new season and I hope you will come with me through it.

If you are a reader of my blog, thank you for being here. I do ask for your patience as I found out when I logged in to write this post, that my blogging platform (eBlogger) had completely changed almost everything about the platform. I cannot even find spell check right now. And, when they made the changes, all the formatting got messed up. I guess that means I'm just going to have to work a little harder at it.

Also, thank you to the people who gently kept encouraging me to come back, most especially, my very supportive mother and my ever patient husband. I love you both.

Tuesday, February 6, 2018

A Story Of Euthanasia

I was alone at my favorite restaurant today and the waitress had just set my meal down in front of me. I started to eat and all of a sudden, memories rushed into my head; memories so powerful that the tears threatened to come.

Eat, I told myself.
Hurry up and eat and you can cry in the car.
So I did.

And I cried all the way home. As I was driving home, I realized that the second I got home, I needed to finally write about this. I promised myself that much at least.

It's been a little over 9 months since my dog, Molly, died. And while I've wanted to write about it, I haven't.

I couldn't.

I'm not exactly sure what makes today different. Maybe because I promised myself I would. Maybe it is because I have this nagging little voice in my head that is telling me that it has to be written today because soon, someone else is going to need this story....a story that I wish I could have read 9, 10, or 15 months ago.


Molly was my almost 16 year old basset hound/black lab mix rescue. She was my constant, faithful companion for 13 of those years. She was more than a dog to me; she was my child. I couldn't imagine a life without her.

But this story isn't about her life. It is about her death and the process of having to make the decision to end her life.

I had noticed one day in the Fall of 2016 that Molly's breathing seemed labored. In addition, she was more fatigued than usual. Our vet couldn't see her that day and recommended we take her to the E.R. After many stressful hours, she was diagnosed with probable heart failure.

For me, that was the beginning of the end.

My husband and I talked and decided to proceed with medication to manage her heart failure. At this point in her life, at 15 years old, she had slowed down considerably and had some hearing loss. To be honest, I had been mentally preparing myself for years that her advancing age meant we would soon have to make some difficult decisions.

We started with two medications and then took her to see a veterinary cardiologist. She said that yes, she had heart failure and when I asked, said that she thought Molly would probably be able to be managed on medications for roughly 2 years. We left there with several more medications and in addition to medications she was already on for arthritis and a thyroid problem, her list totaled 8 different medications.

Molly actually improved for several months but then her breathing got worse again. The cardiologist told us her echocardiogram showed worsening of the heart failure. Medication doses were increased.

At this time we also started to notice some changes in her behavior that indicated she may have dementia. And, her hearing was getting worse. I had a conversation with our regular vet about when we would know that it was "time." She talked about how many people make the decision to euthanize when the dog stops eating, appears to be in a lot of pain, or isn't enjoying life anymore.

Molly didn't seem to be in pain; she was on a pain medication for years for arthritis. She was eating, although not as much as she used to. However it was becoming obvious that she was starting to struggle. The dementia was getting worse. Her breathing, at times, was getting worse, and her quality of life was worsening.

I remember one afternoon, a few weeks before she died, I was lying down on the couch, on my back. Molly was always an affectionate snuggler but she did something new that afternoon. She got up from her spot by my feet, climbed up on my belly and chest, and rested her head so that we were practically nose to nose. She looked me right in the eye. It was spooky.

I can't really explain how I knew.
But I did. 
I knew she was telling me she was ready to go.

So why did it take us several more weeks (2? 3?) then to euthanize her? I think there were many reasons. I was waiting for my husband to say, "it's time." (this is something we only discussed very recently...about how I knew before he did that it was time). He would point out that she still enjoyed being outside sometimes or that she was still eating. At times her breathing wasn't as bad. I was waiting for one of our two vets to say, "it may be time." Neither ever did.

I was OK with euthanizing Molly. Well, as OK as anyone can be I suppose. The last thing in the world that I wanted was for her to suffer. But I was caught up in the thought of, "what if I am wrong...what if it is too soon?"

I was afraid of murdering her.

But I couldn't get rid of that nagging feeling from that day on the couch when she looked at me. And I was actually thinking about that as I walked into our house one day after about 2 hours of running errands. Something didn't smell right.

I walked into our living room to find several small piles of stool. Not even diarrhea. Just regular stool and it seemed like she thought she was outside. She had been incontinent of urine on and off for many, many months, but the stool? That had only happened one time in all the years I had her and it was due to her getting into something outside when she was 4 years old and not being able to get outside to the bathroom in time.

And that did it for me.
I knew.

I knew that she had to be really confused to do that inside the house. I could live with accidents in the house. Hell, I had been dealing with urine for a while. But it symbolized how much she was struggling, and likely suffering. Things were just going to get worse.

I called my husband at work and told him we were putting her down. I called our regular vet and told them I wanted to make an appointment to have her euthanized. I was shaking so hard, I dropped the phone at one point. We chose a day the following week  when neither one of us had to worry about going to work for a few days afterwards.

Since we first found out she had heart failure, we were making the most of our time left with her. We got 7 months of appreciating every single moment with her. But after I made the appointment, I told my husband I wanted to take her to the beach one last time. Years ago that would have meant a full day trip with several hours of exploring.

We had a glorious 30 minutes with her on that beach. She was almost like her old self again, until then she wasn't, and we decided it was time to go.

Two days after that beach trip, it happened again. It was a Tuesday and she was scheduled to be euthanized on Friday. She was lying on my bed and I had been checking in on her a lot because it seemed like her breathing was more labored. The beach trip, which included 4 hours in the car, was probably too much for her but I was OK with that because she enjoyed it so much.

I laid next to her on the bed and she turned to face me and it was there again...that look. The look that said I've had enough.

I cried and stroked her head.
I called the vet.
I called my husband and told him I moved up the appointment to the next morning.
He asked if I was sure because it was my birthday. I told him that I couldn't prolong her suffering just because it was my birthday. It was the right thing to do.

Molly died on May 3, 2017.
The events of that day are for another time, another blog entry.

So what's the point in writing all this? Sure, it's a bit cathartic but God knows I've had plenty of people to process this with since last year.

This is about more than that. It's about letting whomever reads this know that if you are in this same situation, the situation of choosing death over life, or mercy over suffering, or even compassion over selfishness, you can do this.

Know that there is no "right" time.

If you are taking the time to find your way to this particular post, I know you love your pet. And when you make this kind of decision out of love, you cannot be wrong. You are not giving up on your pet. And for God's sake, don't buy into the whole, "I'm murdering her/him" thing.

You WILL NOT be wrong.

Since last May, I have beaten myself up several times about if maybe we should have put Molly down sooner. Maybe we should have done it when she was first diagnosed with heart failure. That was actually some of the memories that revisited me today during my lunch.

But then I stopped to think about my motives. Did we keep her alive all those months because we couldn't bear to let her go? No. It was a process of trying to give her a good life while managing a significant illness.

What I will say to someone who is wondering when the right time is to euthanize a pet: listen to your gut. Don't overanalyze because it just makes the situation worse. Pay close attention to your pet. You know him or her better than anyone. If your pet gets sick with something that will eventually kill them (heart failure, liver disease, cancer, etc.), make some tentative decisions about how far you are willing to go with their treatment. Think about the kind of life you want for your pet, and for you and your family. And lastly, don't let a vet, family member, or anyone else push you into decisions that in your gut, you know are not in the best interest of your pet.

I know, it's hard.
Hard is an understatement.
I won't lie.
It's an agonizing process.

But in the words of my hero, Glennon Doyle,
"We can do hard things."

Molly around 8 years old


Molly at 14 years old



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.