Luck Fupus

A lupus blog…

So what, so I’ve got a smile on?

Do not adjust your computer/smart phone screens. It really is a post from me.

I fell off the grid, and I’m honestly not all that torn up about it. I took time to unplug and recharge my batteries, and just as I was ready to plug back in, so to speak, it was time to restart chemo.

I’ve had two three infusions (it took me over a month to finish this damn post!) since getting back into the ol’ chemo routine, and they both kicked my ass.  McDicky had my nurse administer a nice juicy steroid pre-med since I hadn’t been on my monthly routine since December. As usual, I felt like She-Ra poison Thursday and Friday, and come Saturday afternoon I experienced the great crash and burn. I spent the next three days in bed, and this past week or two binging on The Wire (how hot is Dominic West?) not doing anything productive on the blog front.

We went away for a much needed vacation to Ocean City, MD, only to have it cut short less than 48 hours in by a tornado-like storm that tore through my town, causing an immense amount of damage. You read that right. A tornado. In southern NJ. What the fuck? I’ve never in my life seen anything like it, it wrecked havoc on mine and surrounding towns.  It’s one thing to watch devastation a town has experienced on TV, it’s another to have it happen in your backyard. Steve and I were extremely lucky in the grand scheme, our damage was minimal compared to some of our neighbors. We didn’t have power for 6 days, but we did have a somewhat-intact roof over our heads, so there’s that.

Diving in head first, how amazing is my new header? I’m kind of in love with it, and I keep watching it scroll through over and over. I was torn with putting the bald and 60+ pound steroid weight-gain pictures on the header, but I said screw it. This is me, this is what lupus does to me sometimes. If you don’t like it, close your eyes. Thanks to Mike for the fantastic new design.

Moving right along…

This time of year is always hard for me, this year particularly so. My moods have been very… bipolar, if you will; I don’t know how else to better explain it. Up and down, up and down, up and down, up and down. As spring turned into summer, and all the Facebook posts were pictures from Mother’s Day, Father’s Day, first day/last day school comparison pictures, I found myself slipping into a bad depression.

Facebook is a like a bad train wreck, you just have to look- or maybe that’s just me. Oh please, we all look. Seeing pictures of everyones’ mini-me will never cause a future headline of, “Cute, infertile, pediatric nurse jumps to death from roof of Babies-R-Us,” but yeah, it hurts my heart, and added to my dark mood.

Since April of last year, life has revolved around my breasts. There’s a joke there somewhere… But for the 5 months following my mastectomy, I was going at least once a week to see the breast surgeon, plastic surgeon, or physical therapist. It became just as much a part of my routine as going to Dunkin for coffee.

If you recall, my Linky Cat pissed on my bras in the middle of my first post-implant meltdown. What I thought was him just being a dick, I now know he was with me in solidarity. Mommy, you don’t need these boulder holders, you have perky new hooties! I shall piss on ALL THE BRAS!

And piss on the bras he did! I love that fuzzy little dude.

LinkyCat

That face!

I don’t believe the finality of the double mastectomy really hit me until all was said and done with the second surgery. With the expanders, I knew they were temporary, and that as much as I hated what I saw in the mirror and the horrible physical pain they caused, they were going away. After the implants were put in, I was thinking, This is it? Two globes and some scars?

After a meltdown during my first post-operative appointment with Dr. Fahey (there were a few meltdowns after the 2nd surgery), she assured me the majority of her mastectomy patients have an influx of ALL THE FEELS after the permanent implants are placed.

And (thankfully), that’s all behind me now. I saw Dr. Fahey 2 weeks ago, she gave me a hug and said she’d see me in 3 months. After the surgeries, and the hospitalizations, infections, pain, and tears, it was all so very anti-climactic. She left the room, I sat there looking at my nipple-less titties like, Really? Now what? Where’s the cake and balloons? Where’s the Dippin Dots?

I know you’re thinking… so this chick is claiming she doesn’t know what to do with herself now that two major surgeries are behind her? In a way, yes.

I’ve been struggling a lot lately with trying to figure out my purpose in life. When I met Steve and eventually realized we would get married, I had it all planned out- nurse at CHOP, wedding, nurse practitioner, house, baby, baby (two sisters, of course, just like Brie and me). Nurse- check. Wedding- check. Masters- check. House- check. Lupus- check. Cancer- check. Baby- NOPE!

Hey, what the fuck? This wasn’t how my story was supposed to go.

I had a long conversation with McDicky last week on why working in the Cardiac ICU (or any environment where I’d be doing direct patient care) is not an option.

“Marla, do I really need to lay this all out for you?”

No. “Yes.”

And because I’m an asshole, I made him list off the reasons, one by one, yet it didn’t give me any satisfaction, and actually made me feel worse. I thought I’d spend the rest of my nursing career in the CICU in some type of capacity, but hearing him say that I’m just as much a risk to the patients as they are to me was disheartening (no pun intended).  On my first day in the CICU almost 6 years ago, I watched one of the surgeons close the chest of an infant at the bedside. I stood there and realized I found my home, and ironically enough, it had been my home since I was 6 weeks old when I was first a CHOP cardiac patient. Cardiac patient turned cardiac nurse at the place that saved her life, you can’t write a better story (In fact, you can read that story here… shameless plug!)

For many their profession is just what they do. I’m certainly not the best nurse, not the smartest, I make mistakes, and I may not be the quickest on my feet, but, nursing truly is ingrained in me, a part of who I am. Perhaps I sound a bit like a petulant child, “waaaah! I can’t do what I want!” but, without trying to sound dramatic (who, me?), I’ve been feeling worthless as of late.

I watch Steve go to work every day, friends go to work, and the ones who aren’t working outside of the house are still 24/7 employees taking care of their children. I feel like I’m observing it all from the wings, wondering exactly when I’ll return to some normalcy. I’ve had this strong desire to do something, to find that perfect job that is fulfilling and offers a great work/life balance (is there such a thing?) and won’t put me at an added risk for infection, to go to Italy and eat all the food, to take a ride in a hot air balloon… yet, here I am, at my computer, utterly exhausted from last Thursday’s chemo and last night’s Methotrexate, and cranky that, right now, this is it.

So yeah, I’ve been in a funk since my mastectomy and all the festivities came to an end. I’ll bounce back.

Hehehehe… bounce.

Love you all!

Comments

  1. Tia G. says:

    I just LOVE the header!! It’s fabulous and I love the rotating photos…it’s perfect and professional.
    I feel ya on the being stagnant thing….I hope you find something that fulfills you….and something that is more than another IV bag or another round of chemo. Those will always be there. I love that you have become such an advocate for your own health and those around you. You are doing fabulous and trust me, you are not alone. Keep on keepin’ on, love.

    • luckfupus says:

      Thanks! Mike did a really great job with it, but the switch over to WP has definitely been a learning curve. I’m not saying that I don’t feel fulfilled with the blog/advocacy gig, but, it’s just not the same. And it’s not because I went to school for so long, or I think I’m better than this whole blog thing… it’s just… so not what I wanted for myself. Which I know everyone can say, but I really never thought it would get to this point. Im rambling, and probably not making sense. Love you <3

  2. I love the new header. That is awesome, truly.

    It’s hard to struggle with purpose. You’re not in an enviable position, that’s for sure.

  3. Holli says:

    I love this new look!! Your picture changing in the mirror is freakin GENIUS!!
    You have so much purpose sweet girl. You have already educated a large handful of people about Lupus by having your blog. Continue to be that voice on those speeches your invited to. That is perfect for you.
    I just wanted you to know that I missed you , and I love you dearly. xoxoxo

  4. Becca says:

    I love your blog! I have lupus as well as stage 2 BC. Had my bilateral in April. Patiently waiting for my implant surgery in sept. Stupid expanders. I had really bad infections on my skin so I was almost not able to have the reconstruction. My surgeons are miracle workers! I’m in the same boat at 36, not able to have a family, not able to work. I’m glad to know I’m not alone out there!! Thank you for sharing. 🙂

    • luckfupus says:

      Wow, it’s like we have the same story! I had a pretty nasty staph infection about a month out from the mastectomy, it landed me in the hospital for a week, and put everything on hold, and we weren’t sure if my thin skin (damn steroids) would hold up. So sorry you’re going through this, but I’m glad you were able to read this and relate. You’re never alone! <3

  5. Kelli says:

    I love the new header and I’m glad you included steroid you, you’re right she’s you and we should all love her!

    I think you’ve found your purpose in a way and just need to figure out how to expand on it. You my friend are a patient advocate with medical knowledge. You have the tools to really affect health care and I see you use them often. Get creative and blaze your own unique career path!

  6. Gwen says:

    I’m kind of obsessed with your new header! And I’ll be curious to hear more about your transition to WordPress.

    I’m glad I didn’t do implants, and I’m happy with my flat(ish) tummy, but I’m almost a year out from my last abdominal surgery and I still have a good deal of pain and uncomfortableness. Still, it’s better than cancer.

    It had to really suck to hear that, never mind the risk to your health, but you could be a risk to patients. I’m certain that you will end up doing something fulfilling in a way you may never have thought possible! Love you!

  7. Syn says:

    I am currently ramping up on steroids again for my intractable migraines with my freakish stroke like auras and superpowers. The past two rounds of dexamethasone I cleaned the entire house, I’m curious what I will do this time. I get the crashes afterwards, they suck, I can’t imagine following it with chemo. I will say though my batshit crazy amazing neuro gives me dexamethasone oral (usually it’s a one time IV), and added a taper and it makes a huge difference. I still go days without sleeping, and that always causes a crash, but not the super abyss of blackouts, aphasia, and other absurdities without the taper.

    The chronic illness beat sucks, but life goes on in moments. I fell into becoming an expert with PTSD (which I also have), had a job I loved, and had to go on disability a little over a year ago. It was devastating. I had made it through two surgeries (one for endo, one for adeno). Months and months of severe chronic pain, chemically induced menopause, etc, etc without skipping a beat. 6 months later life is totally awesome and coming back together again and BAM I develop two different devastating illness that cause vertigo, and my basilar migraines went nuclear. I too was a greater risk to my clients, and on disability I went.

    However, I am back at it for now. I’ve learned to be ok with for now (most of the time, though I had a solid 40 minute meltdown today, I’ll admit). We become better human beings for the BS we go through.

    Also I love your header too! And you are awesome. I have read your blog on and off for a few years now. I love seeing others who don’t stop fighting. It keeps me fighting my battles. It makes me write about them, and keep encouraging others to keep fighting.

  8. Nicole says:

    I didn’t realize you posted this until I saw it on my FB feed (bloglovin isn’t working for your site :/)

    I’ve been avoiding FB a lot too since I miscarried again. Seeing everyone’s pregnancy announcements and children makes me want to climb up on the Babies R Us store with you.

    I can’t imagine I’ll ever be able to say anything that brings you peace with your situation (although you do a pretty amazing job of handling the shitstorm on your own) and I know I’ve said this so many times before but it’s true, you are an inspiration to me. Whenever I’m feeling down about my health problems or life I think about you and how you keep your head up even when it’s all being thrown at you and it reminds me that 1. Hard is hard and 2. I will get through it.

    I love you for that.

  9. Dr. Gil says:

    You are an inspiration. Always have been!

  10. Seda says:

    I absolutely love the new header. It sums up so much and eloquently shows what I go through everyday. Looking in the mirror trying to come to terms with this person that I don’t recognize staring back at me and painful flashbacks of the life I no longer have and the distorted one I do.

    Even though I know it’s hard I’m glad you put in the pictures you are uncomfortable with. It would not have been the same without it. Sometimes it’s so painful to look at pictures of the person I once was. But it’s about coming into a gradual acceptance Of your own truth no matter what it looks like. Thank you for sharing your struggles. Even if you didn’t write anything those images resonated so deeply and said it all for me.

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