Do you guys ever have euphoric feelings when everything in your life is going amazing, only to be dragged down once again and set back even further? *raises hand*
That’s certainly me right now with my lupus. In 2016, my health was finally getting better and I was getting negative protein in my kidney. My labs were amazing, and things were starting to look up. I swore I was on the road to remission. I was tapering my prednisone and plaquenil dosage. Long story short, afterwards I was having issues with my insurance (but I don’t want to get into too much detail about why or how), so I wasn’t able to see my doctors for a few months. I had to go to through a different doctor, and it was a big struggle to get all of my medications. Luckily, I always had my keppra (anti-seizure medication) available.
After Cecilio and I got married, I thankfully was able to go under his insurance and see my doctors again. Ever since I started seeing them again, the protein in my kidney started going back up. It was to the point where I had to go back on prednisone, and I have been on it since early November. Since then, I have gained 15 lbs., despite working out 3-5 times a week. I went from weighing 129 to 145, after struggling so much to go down to that weight from my last prednisone stint from 2013-2016 and weighing 158 in 2015. I have not been able to taper from my 20 mg dosage either.
In addition, during my last appointment with my rheumatologist, he told me to absolutely not get pregnant. I almost burst into tears because even though I really don’t want children right now, I still do eventually, at least when I turn 31 (something Cecilio and I will start to seriously discuss in 2020 or 2021). He made it sound like I should not have children at all, because while most lupus patients have a relatively easy pregnancy, their conditions don’t target any of their organs. Meanwhile, I have lupus nephritis and cerebritis, which attacks my kidney and brain, so my future pregnancy would be considered extremely high risk. So there’s always a chance that I could have renal failure and/or that the baby could have neonatal lupus. It almost sounded like he said that I shouldn’t have children at all, which is why that discussion ruined my day. He said that I absolutely must not get pregnant within a year or 2, but who knows where my body will be after that, it may change (for better or worse). Still, I had to hold back my tears multiple times at work.
On most days, I wonder why my mom, sister and I had to be diagnosed with this stupid medical condition. I still try to take it one day at a time and focus on the positives, so I almost feel like a hypocrite for posting about practicing gratitude or sharing my faith through blogging but still feeling in despair about having lupus.
Will it ever get better?
Will I ever get healed?
I’m not a stranger to feelings of hopelessness, especially regarding my lupus. I had 2 seizures in 2014, which left me not being able to drive for the whole year. Thus, I was not able to get a job or an internship while at university, due to living far away and having transportation issues. This led me to be depressed while in class because I felt like I was behind my classmates, and it affected my homework and projects. Thankfully, I got my license back 2 months before graduation, and my brother-in-law no longer had to drop me off and pick me up from campus.
Every appointment with the doctor ends up with me having a nervous breakdown afterwards, especially when they aren’t ready to taper my prednisone yet. I guess every appointment is always a reminder of my frail body.
Maybe you are are going through a season in your life where things aren’t turning out the way you hoped or wished for, and it’s left you wondering what’s the point of even trying harder to achieve what you want when you have all of these roadblocks in the way. You’re probably scratching your head, questioning if things will ever get better on your end.
I’m here to tell you to keep pressing on, because there are and will be days where you want to give up. Resist the urge to give up and fight for that sliver of hope and faith. In the meantime…
Let it all out
It’s okay to feel down in the dumps, it’s ok to break down and cry on the way home. I certainly did after I got home from my workout class (though I did feel physically and mentally better afterwards). Sometimes you may need that to clear your head and let out bottled up emotions you’ve locked in for so long.
All I needed to feel better on that day was coming home to Cecilio, and him giving me a big embrace while he was making delicious ramen on a rainy night. I know I kept texting him all day about the whole appointment, and he kept reassuring me that there is absolutely no pressure or rush on his end to start a family, and that whatever happens he would be there right by my side every step of the way. There was still some raw emotions the next day, but I felt so much better. You may not have a significant other, but there are people out there who care for you and your well-being. Don’t be afraid to confide in a friend or family member, or even seek therapy. I was so frustrated in November that I even posted a Facebook status, wondering where God was throughout all of this. How was it so easy for Christians to say just believe, just have faith when I was going through these difficult trials? My mom responded, saying that we may never know or understand why we go through these trials. But that there are people who are perfectly healthy but don’t have the support I do (Cecilio, family, friends, etc.) I received a lot of love and comments from others as well. It was when I realized that God does speak, answers prayers and shows love for you through other people, and I really felt His love when my loved ones commented back or checked up on me.
Seek the positives throughout the trials
I actually hate hearing “look at the positives!” because it’s such cliche advice and easier said than done, so I was hesitant to give this piece of advice myself. But you really do need to dig deep and seek the good things that came out of your trials and feelings of hopelessness, and remember how strong you were to be able to overcome them. Lately, I’ve been ruminating over what would’ve happened if I didn’t struggle with horrible lupus flareups between 2011–2014. What if I didn’t need to go back on prednisone in 2013? What if my license didn’t get suspended? I probably wouldn’t have started this blog, which is one of my biggest joys and passions today. If I didn’t start a blog, I wouldn’t have known so many other amazing bloggers around the world. If I didn’t start a blog and continue on with it for almost 4 years, I would not have the job I have now (I work as a graphic designer/social media marketer for a food bank, and I actually put in my blog under the Extracurricular Activities section in my resume when I applied there). Sure, I would rather never ever be on prednisone and I wish I did drive while I was taking my upper division classes in school so that I would’ve been able to apply for internships and jobs and gain more experience for my major and career. Yeah, I had 2 internships AFTER I graduated (instead of being able to gain that experience while I was in school), and it took me a full year to land a full-time job. But what’s done is done, and there is no use crying over “what could’ve been”. I couldn’t be any more thankful right now for where God has placed me. Where I work is the best organization I’ve ever worked for, and I felt completely at home on my first day in September.
Above all else, don’t give up.
Oh, you don’t know how many times I was so tempted to take an extra year to graduate (and I was already on the 8-year plan, embarrassingly) when I was struggling with the workload at school on top of dealing with lupus. I even had thoughts about just dropping out and making money from being a Youtuber (not that there’s anything wrong with that, but we all know how difficult it is to make it big there). But something in me just had to keep going and pressing on to get my Bachelor’s degree no matter what it took.
I’ve felt so much pain and despair from not being able to find a job after my last paid internship in 2016. Of course I wanted to throw in a towel and just give up! But I still kept checking everyday on LinkedIn or Indeed to see if there was something, anything out there for me and if there was a place where I could contribute my skills. A year of job hunting feels like 40 years in the dessert. Now that I have a job, I appreciate it so much more and I don’t ever take it for granted. And I never ever forget where I came from.
When a Pure Barre studio just opened up near where I live, I signed up for the first month trial and started working out there frequently. I LOVED my results, and I finally felt like I was getting my dream body. But prednisone robbed that away from me with the 15 lbs. I gained from it. I could’ve just given up and never ever came back. But I signed up for their 12-month auto contract, am still #LTB-ing (lift, tone, burn–Pure Barre’s slogan) and have taken 53 classes under my belt. Even when I want to cry from discouragement, or feel so embarrassed from the weight gain despite being a regular there. Even when I’m exhausted after work or when it’s pouring outside. I still have that teeny tiny piece of hope and faith of a mustard seed that my health will be better, even if it doesn’t feel like it 98% of the time.
Enough about me, what about you?
Have you ever undergone a situation where you felt in despair? How were you able to get through it?