Luck Fupus

A lupus blog…

Time can bring you down, time can bend your knees…

I have never felt more alone than I have in the last 6 months since Daddy died; the grief is suffocating. Mind you, I have friends and family who check in on me every day, but I can’t kick the perception of being isolated. Most days I don’t want to get out of bed, and more often than not, I stay in bed until I have to clock in for work at 4:45pm. There are hundreds of unanswered texts, emails and voicemails, plans made I don’t have the strength to show up for. Every cell inside of me misses him.

My brain is all over the place. On Sunday November 5th, it was just Daddy and his girls at the hospital. He was intubated, sedated, covered in bruises head to toe, but he was still hanging on.

I feel like a fraud. I keep up appearances for social media, my patient advocacy work, still with my “I got this!” attitude. To be honest, I feel empty inside and the days drag.

In classic Marla fashion, when I was asked a question about my stance on clinical trials while giving a presentation last month, I burst into tears in front of a room of pharma “suits.” I tried to keep it together, be strong and tell them that I still believe in clinical trials. But instead I turned into a teary-eyed, blubbering mess explaining the biggest breakthrough in cancer history failed my father.

Through snorts and tears, my mind went blank, I picked my head up and said “I’m done now.”

Enter slow, awkward clap…

Can’t win them all.

In the week following his death, TV and social media outlets blew up with stories, Podcasts, articles, tweets, commercials, billboards, etc., showing the wonders of CAR-T cell therapy and clinical trials at Penn. Even Mark Zuckerberg found a way to taunt me, as sponsored posts from Penn Medicine and the immunotherapy breakthrough are splashed all over my FB newsfeed every day. My nurse at my first infusion after his funeral was wearing a CART cell clinical trial Penn Medicine t-shirt. Everywhere I turned it was right there, reminding me, haunting me, instilling bitterness, anger, and pushed me down a hole of despair.

Day by day, I’m working on it. Trying to remain present, when all I truly want to do is stay in bed. I’ve missed parties, get togethers, Communions, showers… not having kids certainly makes it easier to be a hermit. I tried an anti-depressant that caused some pretty unbearable adverse reactions, which sent me back a few steps. But with the help of some new techniques with my therapist, warmer weather, flips flops and iced coffee, the days haven’t seemed quite so daunting.

Mother’s Day, one of the most difficult days of the year for me was almost two weeks ago. As I promise every year, you’ll never see the headline “Infertile pediatric nurse jumps to death from roof of Babies ‘R Us!” but I did go radio silent on the social medias for the weekend.

Self-care, my friends.

Thanks for bearing with me. Although the blog has taken a huge hit, I’m still out there raising my voice for patients; I’ve been to several conferences and was featured in one of the local Philadelphia papers last month. The updates I said were coming have taken a back seat to some new health issues that need dealing with.

More to come. I promise.

Comments

  1. Christine M M Sanders says:

    My heart goes out to you. I lost my father suddenly in 1975. I found definitive proof within 3 months that foul play was involved; could NEVER be prosecuted. My dad was so honest he never took home a pencil from work; which is why he was killed. A great father is a wonderful gift however it makes the loss that much greater. I still have days where I miss him all day; I still cry. Not as often as in 1975, or 1980. I won’t tell you I KNOW how you feel, I won’t tell you how to deal with it or get OVER it, I won’t promise you anything. I will send my love from far away and mean it,
    Hugs and love, Chris

  2. Robbinforever says:

    Dear Sisters,

    It has been almost a year since all this lupus came into my life and changed it forever. I find myself crying a lot more then i ever had before the long sobbing cries help me the most. I’m able to let all my feelings out the anger, sadness, fear of the unknown, and the what if feelings. The loss of control and dealing with the fact that your body is no longer healthy. I’ve gone to some pretty dark places with all my tears, but when the crying finally does stop I feel better. I think crying has been a part of my healing process because I have let my body release all the deep feeling that I have been holding in.

    Where are your go to places to have a good cry? Mine are:

    The Bathroom at home and work

    Bedroom

    The Bus -Not sure why I cry on the bus I usually like to cry in private.

    I am done crying now, I am doing lot of reading online, hence came here, you should also try checkout web md, EverydayHealth they have some good information – As they say, “It’s hard to predict the course of illness, so it’s important for patients [with lupus] to check in regularly with their rheumatologist.”

    Hugs and Love to you,

    Robbin

Leave a Reply

Somebody’s watching me…

  • 76,830 hits

© 2018 Luck Fupus · Powered by WordPress · Made by Guerrilla