Friday, October 4, 2019

In the Clinical Trial of Life, You Are Always an N of 1 (RD Blog Week #5)

I’ve felt this for a long time, but I’m finally writing it down, because I think it’s good advice for newly diagnosed patients, and I wish someone would have told me something similar when I was first diagnosed.

Clinical trials are scary. Many patients feel they would only participate in a clinical trial if they were desperate, in a last ditch effort if no other treatments work.

But the reality is, in the clinical trial of life, you are always an N of 1.

No matter how tried and true a treatment is, no doctor can ever adequately tell you or know how you will react to a medication. Sure, by prescribing something, they may be acknowledging that the perceived benefits are greater than the perceived risks, but there is never really any way to know for sure until you’ve tried it yourself.

No two patients are alike. When you’re first diagnosed, everything feels scary and unknown. And you look for common ground, for people that are going through the same things that you are. And that’s great. It’s 100% necessary to find patients like yourself.

But again, the reality is, in the clinical trial of life, you are always an N of 1.

Having both lupus and RA, I took Humira with the acknowledgement that it could make my lupus worse. However, I never imagined that six months into treatment, I would suddenly have the worst lupus flare I had ever experienced, which left me almost completely bedbound for two weeks. When I finally realized that I couldn’t brave the storm any longer, my PCP suggested that I see my rheumatologist as it sounded to her like the flare may have been the result of Humira.

When my rheumatologist told me to get a pneumonia vaccine, I did so without question. I ended up getting cellulitis and almost lost my arm.

You are the only expert in yourself. Even when you’re body betrays you and has gone rogue, you still know your body better than anyone.

So if you approach a clinical trial the way you approach any other treatment, or vice versa, it normalizes it. It doesn’t make it as scary.

Because in the clinical trial of life, you are always an N of 1.

Thursday, October 3, 2019

We Are All Part of This Community, No Matter How We Are Doing (RD Blog Week #4)

As of late, I haven’t been blogging. It’s not so much that I haven’t had things to say as much as it has been a struggle about whether or not I should say it. I hesitate to express feelings I’ve held for quite some time. But, here goes…

I have made great friends through social media, blogging, and the chronic illness community, and I am forever grateful for that. However, I feel like so often it turns into a competition of who has it worse.

So, when I’ve been doing relatively well, I hesitate to share it. In the last two years, I’ve bought a house, gotten engaged, and gotten married. And while I know that the friends I’ve made through this community are happy for me, it’s hard to confront the larger community when so many others are struggling.

And it’s not that I don’t struggle with lupus and RA. I definitely do. It’s just that the suffering is no longer constant for me.

I’ve wanted to share everything that’s been happening, both the good and the bad, but it’s hard. It’s hard when you’re happy and want to celebrate it. It’s easier to rail against the bad stuff – medications not working, doctors not listening, struggling to stay above water when you feel like everything is closing in around you – because you know that others can relate. You’ve heard it all before, over and over again. You hear less of the good things.   

And it diminishes everyone to not allow the sun to shine through the clouds. It diminishes all of us, because we are not just these illnesses. We are wives, husbands, sisters, brothers, daughters, sons, friends, and so much more.

We are who we are, and we should never have to apologize for that, or fear that having a good day and sharing that, is going to anger those who aren’t in the same place.

I think that as a community, in order to be cohesive, we need to celebrate our triumphs and our tragedies, our highs along and our lows, whether medical or otherwise. We need to support each other, not tear each other down.

It starts with a simple question: How are you? That’s pretty basic, right? But what’s not so basic is to actually listen to the answer to the question, and to enthusiastically respond, regardless of what the other person’s response is. If someone’s doing well, be their cheerleader. If someone’s struggling, encourage them.

We’re stronger together. We’re stronger when we display a unified front, when we fight as sisters and brothers in the struggle, no matter what stage of disease we are in. We must acknowledge our shared experience. Our shared experience is what brought us together in the first place, and our shared experience is what will keep the community going.

In a world filled with so much divisiveness and strife, we need to be part of the solution rather than part of the problem.

The sooner we stop fighting with each other, and start fighting for each other, the better off we will be.

Tuesday, October 1, 2019

Looking Back On 12+ Years of Chronic Illness (RD Blog Week #2)

When I was diagnosed with lupus and RA 12 years ago, I thought my life was over. I was in my first year of graduate school. Professors and my doctors told me that I should drop out of school. I didn’t listen. But I’d be lying if I said that having lupus and RA didn’t change things for me. They definitely did.

Deciding that I didn’t want an academic career was a difficult choice, but one that I made. I knew I wouldn’t be happy or competitive in that kind of environment. It shouldn’t be that way, but at least when I was preparing to enter academia, it was.

Getting a second master’s degree in health advocacy  was another choice that I made. Looking back, I don’t regret anything (except my student loans), but I do wonder if things would be different, or if I’d feel the same way I do now.

Getting my first full time job after being a student until the age of 30, buying a house, getting engaged, getting married, and considering starting a family, are honestly things I couldn’t have imagined 12 years ago, when my life seemed to be taken over by lupus and RA. All things chronic illness.

Some things in my life have clearly settled, but in terms of what I want out of a career hasn’t. I’m trying to figure out where I belong and where my skills are best suited. I’m doing my best at maintaining a full-time job, but I’m interested in alternative careers.

I’ve worked so hard to fight my way through eight years of graduate school to not really knowing exactly where I fit in.

Honestly, when I first got sick, marriage and children were an open and unanswered question. Would I find someone who would love me despite, or in spite of, my complicated illnesses? I did. However, the jury is still out on the whole having kids thing, so that’s TBD.

At the core, I’m still me, just different. My priorities changed. And that’s how life is, even without illness.

Now, I do have a desire to have a family, so what that’s going to look like is going to be interesting. And that’s where a lot of my focus is right now. The specter of having to go off of medications that I have come to rely on, and what that will mean for my home and work life, is a huge deal. There are so many unanswered questions.

I think a lot of what having a chronic illness does is that it forces you to face unknowns that healthy people don’t necessarily have to think about.

For 12 years, my life was almost entirely consumed by chronic illness. Now it’s consumed by things that are normal for people my age; maintaining a job, exploring what else is out there, dating, engagement, marriage, children.

Obviously, chronic illness colors all of those experiences and makes most of them more difficult. But I’m no longer just a chronically ill person. I was someone’s fiancĂ©e and now I’m that person’s wife. I hope someday to become a mother.

In a way, it’s sad that chronic illness isn’t my complete focus anymore, but it’s also refreshing.

Monday, September 30, 2019

Medication Meltdown (RD Blog Week #1)

For the past five years, I have been on a combination of medications that has worked, been the most consistent, and lasted for the longest period of time since I was diagnosed with lupus and RA. I can’t explain how grateful I am for that, especially given that it is so much more difficult to find treatments that work, having multiple autoimmune diseases, and trying to find treatment regimens that don’t help one disease at the expense of the other.

But that is all about to change…

When I saw my rheumatologist a few weeks ago, he informed me that Quinacrine is no longer being manufactured due to an import stop by the Food and Drug Administration. As a result, I will no longer be able to take Quinacrine. The only other option is Hydroxychloroquine/Plaquenil, which didn’t really work for me and caused chronically elevated liver enzymes.

My rheumatologist stated that since I hadn’t been on Hydroxychloroquine/Plaquenil with Imuran before, that maybe in combination, it will work better than it did before. But then in the same conversation, my rheumatologist told me that I likely won’t be able to stay on Imuran when I want to get pregnant.

I talked to my gynecologist to confirm this, and he stated that Imuran is a Class D medication, meaning that it has been deemed not safe to use during pregnancy.

So with the Quinacrine shortage and Imuran being out for pregnancy, where does that leave me? Everything is being upended.

It feels like several years of being sick and trying to get a diagnosis, six years of trying to find a treatment that worked, and another five years of being on a treatment that worked, is going up in smoke in a matter of months. It feels like a lot of hard work for nothing.

I’ve struggled through medications working at first and then suddenly not working. I’ve dealt with unpleasant side effects that I was willing to put up with in the name of feeling okay. I’ve suffered through medications that have helped my RA only to make my lupus flare, and medications that have helped my lupus only to make my RA flare. I’ve handled medications not working at all.

And of course, this would all obviously be somewhat easier if it weren’t for the fact that I have multiple autoimmune diseases to contend with.

I know that this is a struggle that most of us with these illnesses share. But honestly, nearly 12 years after my diagnoses, I don’t really feel like the medical community knows more now than they did then.

Quinacrine is off the table. No one has a solution for that other than to take a medication that previously hadn’t worked or to suffer through without anything.

And Imuran is soon to be off the table due to wanting to get pregnant. My gynecologist said that if I can live without Imuran, I definitely should. I’m not going to risk taking it.

So I asked my gynecologist if I should prepare for the longest nine months of my life. His answer? Yes.

So there you have it. I’m back in the same place I was 12 years ago. Back then, though, no one would talk to me about pregnancy because it was “just hypothetical”. Now, at least they’re willing to have the pregnancy conversation, but I don’t really like what I’m hearing.

I don’t know what my life will be like without these medications. I can barely go a day without them before my immune system goes into overdrive. So we’ll just have to wait and see.

Tuesday, January 1, 2019

Happy 2019!!!

I know I’ve been noticeably absent from my blog in 2018 and I apologize for that. As always, life seems to get in the way.

2018 was a big year. We bought a house, and got engaged.

One of my New Year’s resolutions for 2019 is to blog more and get back on the conference circuit. I hope I can make it happen.

In the meantime, I’m still here, so please don’t forget about me.

More coming soon, I promise!