6-Month Rituxan Update

With 6 months since my loading dose of Rituxan, I’m absolutely thrilled to say that I’m physically the best I’ve been in a couple of years. Mentally, I may be the best I’ve ever been since getting sick when I was eleven. 

As I mentioned in my 3-month update post, the progress has been slow but steady. As it was when recovering from PANS, it often has been so slow that I didn’t really know it was happening at all. 

Six months ago, it was all I could do to work for forty or fifty minutes at a time at my desk. I used to feel an overwhelming need to go lie down and would need to rest for at least an hour or two at that point. The most I could manage on the best day without crashing would be two or three hours of work.

This past week, I have been working for 4–8 hours per day without noticing. And just as telling, when I feel I need to take a break, it is mainly a mental break I need. And I feel like I need to get up and walk around and stretch rather than lie down—a completely typical urge for any healthy person I would say.

Mentally, I have come down to the lowest dose of one of my meds in over five years. Another one is the lowest it’s been in two years. But even more notable is that I am so focused on my work and friendships that I often forget that I’m technically sick.

I think I’m getting close to a time when I reveal what I do for a living and maybe even who I am, because it’s getting to a point where only talking about dealing with my illnesses feels completely one-dimensional. But for now I’ll just say that the latest project from my job might be my best work to date. I feel passionate about raising visibility for chronic illness and disability in my field, but I’m trying to figure out how that ties in with this blog.

Recently, I started seeing another specialist, and in looking through my medical records again, I was struck with a sobering realization: I never make it more than a couple of years before some virus or infection completely upends my life. I’m about to be at that two-year mark. 

Having a neuroimmune relapse feels less like a question of if so much as when. And things are going so well that I sometimes feel like surely something bad is about to happen. 

I no longer live in fear of a PANS relapse, but the reality of living with mild-moderate ME and POTS means it feels there’s always a possibility that it could all get worse again. How would I take it if it happened again? Now that I’m establishing myself in my field, I fear it would be even worse if everything fell apart all over again.

But instead of living in fear and worry, I’ve decided to be proactive about doing everything I can to prevent a worsening of my condition. I know I’ll get some pushback for saying this, but for me that has included getting the COVID vaccine. It’s much better to risk a flare and become immune to COVID rather than to take the risk of catching COVID and living with long-term complications. The “1% death rate” some harp about doesn’t even begin to tell the whole story of what’s really at stake. Some are forgetting that even mild viruses can upend a life with a neuroimmune condition.

But you know what? I haven’t flared from the Moderna vaccine so far a month later. We’ll see how the second dose goes, but I feel confident this was the right decision.

I’m planning a longer post in the future about why I chose to get the vaccine, but I just wanted to jump on here and give everyone a quick update that things are going really well.

I’ll probably post more soon about all of this, so stick around…

When What You Fear Most Is the Right Decision…

I’ve done something scary: I re-applied to grad school. 

Two years ago, I left grad school not completely by choice, but out of necessity when I was diagnosed with Myalgic Encephalomyelitis. I’d spent that year in grad school living in a completely new part of the country by myself. I’d had a great assistantship. It was all very hard at times, but I learned so much in that year.

So that summer, to become so ill was shocking and devastating. It didn’t compute that I could no longer drive, put away groceries, walk to the mailbox, or even load the dishwasher by myself anymore. There are no words to describe how devastating it feels to become fully dependent on your family at age 24, after having lived by yourself for five years. 

In the physical and emotional state M.E. put me in, there was absolutely no way I could have safely resumed school.

While in the thick of PANS, I had always pushed myself to go back to college every semester even in the worst of times, even when a lot of me thought I couldn’t possibly make it. I had always powered through, consoling myself by knowing that staying in school meant I was still moving forward in life. College had been my anchor to reality and normalcy when I couldn’t otherwise recognize myself or my life due to the brain inflammation. The structured nature of college kept me going.

But this time, it was different. 

While in the worst of PANS in college (except when it showed up as anorexia), I had retained my physical stamina. In fact, I could run ten miles at times when I struggled to put together a sentence. But now that I had Myalgic E. instead, I was so frail that I couldn’t even do five sit-ups without getting ill for a week afterwards. 

My doctor warned that I would permanently worsen my condition if I tried to go back to grad school. I hadn’t wanted to hear it because I thought I could hang onto grad school the way I hung onto college. 

But one morning, it finally all came to a head when it took me four hours to get out of bed because all I could think about was how overwhelming and impossible it seemed to go back to grad school in three weeks. My mom finally came and dragged me downstairs, but I just started sobbing.

“I can’t go back,” I moaned. “I don’t think I can do it.”

“Then don’t.”

I paused, contemplating such a profound statement. But how could I not go back after I’d aced college even with brain inflammation? How could I give up now? And yet I knew she was right, and I knew how relieved I was to think about not going back.

“Maybe I should just transfer to [state university] next semester so I can keep living here,” I said, almost joking.

“That’s actually a good idea.”

I paused, realizing that transferring in grad school, though unorthodox, was a real possibility. “But how could I go there after I’ve gone to [first grad school]?” I countered. “It won’t be the same.”

“Do you want it to be the same? Do you want to be so depressed about going back that it takes you four hours to get out of bed?”

“But,” I started, staring at the floor. “I worked so hard to get there. For years, I tried to do everything right so I could get in.”

“I know, and you earned it. But [state university] is a great school, too,” Mom reminded me. “I think you know you’d have a great experience there––after you’re well enough.”

That afternoon, I finally accepted my circumstances and informed my university that I would not be returning due to my illness.

The thought of transferring to the state school someday and having more family support during school buoyed me. The idea helped me see that my original grad school didn’t hold the only keys to my future.

After I left grad school, I learned that sometimes the thing you fear and dread the most is exactly what you need to do. 

Over the last two years, there have definitely been plenty of times when I’ve felt sad about leaving grad school unexpectedly and not finishing my degree. However, not being in school opened up lots of professional opportunities I would have had to turn down if I had stayed in grad school. In my time away from school, I feel like I’ve found myself like never before. I work with a start-up part-time and freelance on the side as well, and I love being in industry as opposed to academia.

So why go back?

The way I see it, if I want to make the year of grad school I already did count the most, then I need to finish the master’s degree. I worked my butt off that year, so I want to earn that degree. 

Half a master’s degree doesn’t earn you much. I happened to be in the right place at the right time (and with the right expertise due to undergrad) to get in with this company, but usually, the top people in my field have graduate degrees. Every day, I’m working with people who all have more degrees than I do. I have wonderful colleagues who value me despite my lack of graduate degrees, but down the road, I will have more options with at least a master’s degree.

Moreover, there are some additional training and research opportunities that are unique to academia. It will be great to have the chance to learn more and get even better at what I do.

Why do I think I’m well enough for grad school?

I decided against applying for 2020-21 because I felt like my health wasn’t where I wanted it to be yet. But I’m optimistic about 2021-22 (and beyond).

Recently, I’ve made a lot of progress in my health. My resting heart rate has dropped to the low 70s compared to the 100s a year ago. The other day, I walked a quarter mile and didn’t crash, whereas the same walk a year ago caused a crash for three weeks. Mentally, I’m 70-100% every day. I regularly work for three or four hours without triggering a flare up. I’ve even been able to dramatically reduce two of my three psychotropic medications! 

I am feeling hopeful and starting to dare to imagine being able to do things like go for a walk every day or do my own housework. I believe I can go to grad school part-time without causing harm.

This time will also be different because I can keep living at home. Continuing to have my family’s support will make a huge difference. 

Taking my own advice to heart…

Something I advise in my upcoming self-help memoir on college and chronic illness is that there’s no such thing as the best school in the country. The best school is where you can thrive both as a person and academically. And for any given person, that usually won’t be whatever school U.S. News has ranked the highest this year. 

So now I’m practicing what I preach in realizing that this school really is a better place for me to be at this time.

I struggled at my old school sometimes because everyone was just as good or better than me. On the one hand, it was stimulating to be surrounded by such smart people, but on the other, I would often compare myself and beat myself up for not being the best—and I never was the best.

But this new school has great faculty and is well-respected within my field, even though the name is not as flashy as where I was before. I will always be taken seriously with a degree from there, and I think I may get more attention in the new program. 

Final words of wisdom

April is often when people find out which colleges or grad schools they were accepted to. If you read my blog, you probably have a chronic illness or know someone who does. So I would like to encourage all of you to not be afraid to choose the school where you can be your best self, including health-wise and as a whole person. And also don’t be afraid to go to community college for a year or two so you can have some support from your family and minimize debt (I went myself!).

Don’t go somewhere only because it seems impressive if there’s somewhere else that will be a better fit for you. School is what you make out of it––the opportunities you find and create, the people you meet, and how you spend your time at school. What others think about the name of the school is far less important.

It might seem really scary to take some time off school to work on your health or turn down admission to a particular school, but sometimes it really is the scariest thing that ends up being the right decision…

Rituxan and the Waiting Game…

I’ve finished my first two rounds of Rituximab infusions and am happy to report that they went very well! 

To be honest, I was terrified of this IV medicine after reading about the potential side-effects of killing your immune system’s B cells. So let’s just say that after getting through the first five-hour infusion, I felt downright triumphant for facing my fear. Continue reading “Rituxan and the Waiting Game…”

Home from Partial Hospitalization

Last I wrote, I had resolved to do whatever it took to stay in the Partial Hospitalization program. And guess what happened? I left the program. 😬

Part of it is that my insurance only approved a certain number of days. I could have fought for more. However, the more I thought about the whole program, the more I began to realize why it was time to go home.

Continue reading “Home from Partial Hospitalization”

PHP Day 7: “It’s Rehab for Your GI System.”

After finishing an entire week in a Partial Hospitalization Program for eating disorders, I am both more optimistic and more pessimistic about moving forward. As expected, I had a big ME/CFS crash on Saturday, the day after the week of PHP finishes. It’s pushing my body past its limit. I’m willing to put up with the worsened symptoms as long as I’m not causing long-term harm, but it’s a fine line. Continue reading “PHP Day 7: “It’s Rehab for Your GI System.””

The Perils of Partial Hospitalization—And Why I’ve Agreed to Go

“You need to go back,” my doctor warned me one day this summer.

I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”

“You need the support… You’re getting worse and worse.”

I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”

Continue reading “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go”

8 Ways to Help a Loved One with Chronic Illness During Holidays

This Thanksgiving week, at a time when almost everyone is stressing out over travel and preparations and relatives, for those of us with chronic illnesses, the season brings additional sets of challenges.

Chances are, if you don’t have a chronic illness yourself, then one of your family members that you’re about to see does. It can feel awkward wondering what you should and shouldn’t say to this person, but as someone with both physical and mental health challenges, I’ve assembled a few tips for loved ones.

Continue reading “8 Ways to Help a Loved One with Chronic Illness During Holidays”

What Mental Health Awareness Means When Chronically Ill

As someone with a chronic illness that was once misdiagnosed as a psychiatric disorder, but who also does have mental health issues, it’s a constant balancing act trying to understand my brain while convincing doctors that mental illness is only one of my problems.

For eight years, the conclusion was that I was sick because I was depressed.  (Since when did depression cause visible joint inflammation?) Even as a kid, I knew better than to believe that.

I was only thirteen the first time a doctor misattributed my physical illness to my poor mental health, but I knew that I knew myself and my body better than a doctor who’d just met me:

“I’m not sick because I’m depressed,” I growled.  “I’m depressed because I’m sick.”

Continue reading “What Mental Health Awareness Means When Chronically Ill”

The One Thing That May Never Recover After My Chronic Illness

With Easter Week and Passover upon us, I’ve found myself face to face with the very thing my chronic illness has changed the most: my faith.

For years, I would’ve told you it was the most important thing in my life.  All through high school, I was a leader in my youth group and involved in several ministries.  I used to read scriptures daily because I wanted to learn more about God.  I used to pray often because I wanted to be closer to Him.  I even used to be enthralled by dense theological tomes, started to teach myself biblical Greek, and at one point considered going into ministry full-time.

But then I got ill.

At seventeen, I suddenly developed an extreme case of OCD. I’d already had OCD smoldering in the background of my mind for six years, which I’d concealed from numerous therapists due to shame, but out of nowhere it became incapacitating and all-consuming.

Continue reading “The One Thing That May Never Recover After My Chronic Illness”

The Plot Twist I Never Expected… And How I’ve Learned to Accept It

After just one stride, I knew something wasn’t right.  I’d always run through anything—be it sickness, rain, or depression—but today was different.  Today, in the midst of training for my second half-marathon, my whole body felt like it was made of lead, and no matter how hard I tried I could barely pick up my legs.

I shuffled down the road for two miles before the frustration of a terrible performance got the best of me, and I dragged myself home, now dizzy from exhaustion. I went to bed in the hopes that I could sleep it off… Continue reading “The Plot Twist I Never Expected… And How I’ve Learned to Accept It”