Luck Fupus

A lupus blog…

So, so what? I am a rockstar!

Right when it seemed my marriage to Steve was plummeting it coincided when Pink’s So What? became extremely popular on the radio. I love her music, and I loved how she was able to sing her (soon-to-be-ex) husband a song full of snark, yet full of emotion on how he let her down when the going got tough. And the fact she was clearly going through similar issues in her marriage the same time as me? Fate. One of my old roommates went to high school with Pink, so it was like we were somehow connected through song and 6 degrees of separation. Kindred spirits.

In my head it appeared so.

That song was my anthem, and when I moved out for awhile, I listened to it non-stop. I danced my little heart out with my hands in air when it played in the bars, it was on constant repeat on my iPod as I ambled through the city streets (I stayed with a friend and her husband who live in Philly), and one day when both Melissa and her husband were at work, I was blasting it singing at the top of my lungs, only to open the bedroom door to use the bathroom, and realize Chris was home.

AWWWWKWARD!

At the time when I thought my marriage was about to meet its’ maker, this song empowered me. I wouldn’t have been quite so snarky had I written a song myself (yeah, I would), but I loved that no matter what happened, through all the hurt, the anger, failed marriage and all, even though you could tell it’s not what she truly wanted, she was going to be OK. And that was all I wanted and needed to realize for myself; that I was going to be OK.

It was a relief to come to the realization, that had it come to that point, I would be able to stand on my own two feet and get by alone. I had a successful career, a bit of savings, and plenty of framily to help when I stumbled.

As you all know, Steve and I realized that we wanted to stumble along through life together, rather than stumble apart. There was still so much good there, but it tends to get swept under the rug when the bad is staring you in the face.

We are three weeks shy of our 7th anniversary. We stumble. We fall. We let each other down. We get back up, sometimes needing the help of family to help put the pieces together.  That’s life, really. He still does things that irritate the hell out of me, and I know he can say the same about me. I’m loud and fight dirty outspoken, and he avoids confrontation at all costs. That’s never going to change, and all we can do is let it make us or break us. Or maybe he could stop doing the things that drive me insane.

Being the chronically ill and infertile wife to a man who deserves all the wonderful things life has to offer is agonizing. We had so many plans, big dreams, and I often feel that his life would be less burdensome if he were with a woman who is the picture of health. It’s a weird thing to feel guilty about. I can’t change the path my health has taken, and there’s no one to blame (but seriously Mom & Dad, what was in the Philly water you both grew up drinking?). I only wish Steve and I had more than a mere three weeks of “normal” newlywed bliss before I got sick.

Our “normal” has become waking up on Saturday wondering if it’s going to be a good or bad lupus day for me, leaving him to go out and about alone if we are faced with a bad day. There are a lot of bad days. It’s him watching me attempt to hold back tears as I open another baby shower invitation. It’s my pretending not to notice his aggravation that a day at the beach for us is not what it once was. Or his disbelief that I am STILL in bed at 6pm when he gets home from work. It’s being nervous to book vacations because we don’t know where I’ll be health wise that far in advance. It’s wondering what the weekly doctor appointments and blood work is going to tell us next. It’s knowing I’ll be on chemotherapy for the rest of my life. It’s the not knowing, but having it looming over our heads every. single. day.

Per usual, I’m going to say something that I should probably keep to myself, but I’d be selling myself short if I hit the proverbial mute button. Get judgey, be insulted, but this is me, and this is how I feel, and have felt since I realized almost 7 years ago that this lupus thing was never going to go away.

Just a little lupus humor
I get jealous of the people who get to return to his or her life pre illness, accident, catastrophe, etc… I realize how horrible this may read, and I’m certainly not downplaying anyone’s journey through hard times. Everyone is fighting some type of battle, I just have this longing to have a day when I can say my battle is behind me. Even on my good days, I’m reminded of this ongoing war when I swallow a million pills so I can function. I may not let my illnesses control me, but the truth is, they will always be one step ahead, waiting for me to step on the land mine.

This sounds whiny, and you know how I feel about whiny. Hard is hard, every couple has their issues, and no one’s journey is any less difficult than the two people next to them. Steve and I make the most of this life, we’re grateful for the good days and the bad days where I slap on some makeup, suck up the pain and enjoy a night out with friends (or whatever we decide to do). I sometimes wish it could all be a little less… complicated

Over the past two weeks my lupus has started to significantly flare again. My body is doing things that it hasn’t done in years, having symptoms that I haven’t had since my initial flare after we returned from our honeymoon a little less than seven years ago.

It’s scary and frustrating. In October I was putting McDicky on a pedestal for being aggressive with my treatments, to getting me off high dose steroids and onto a medication regimen that finally worked. I lost the steroid weight, and I was feeling good. Yet somehow, without even knowing, I stepped on a land mine.

Initial lupus flare circa March 2008
Can’t accuse me of being too sexy
Lupus flare circa Tuesday night 2/10/15
Yes, it’s as uncomfortable as it looks. My entire body was covered in giant welts.
2/9/2015 No lip injections needed, lupus does the job for me.
My long lost sister?
Steve isn’t forthcoming with his feelings when I ask him how he feels about my being infertile, and how it affects him after we fully intended to have children when we got married (yes, I know there are many ways of having a child, that is a post for another day. please keep your “but you can adopt!” comments to yourself). I look at him with our nieces an nephews and our friends’ children, and can see what a good father he would be. Steve has said what a good father he would be. At times I feel inadequate, like less of a woman because I can’t give him that.
But on Tuesday night as Steve watched me run around the house, in agonizing pain, trying to literally jump out of my skin, he looked so defeated. He tried to get me to calm down, to divert my attention to the Flyers game (they lost… womp womp), as 75mg of Benedryl, steroids, Zyrtec and painkillers did nothing. He’d get me to sit still and rub my back, and within minutes I was back to running around the house in a manic state.
Steve looked sad, worried, confused, ready to hop in the car and head to the ER. He turned to me and said “I don’t get it, I thought we were past this.”
And that broke my heart.
In a few hours I’ll be in McDicky’s office trying to figure out just why my body has decided to retaliate against me once again. I’m sure it was nothing I did, but lupus’s way of showing me exactly who is boss. That just when you think you’ve gained the upper hand, lupus is there to remind me exactly who is in control.
Wish me luck at McDicky’s.
Writer’s note: Pink and her husband Cary Hart are still married. They too realized there was more good than bad. Perhaps we’re kindred spirits after all. 

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Comments

  1. holli says:

    Oh Marla- this is heartbreaking to see the pictures and read but yet inspiring from your strength. What can I say? What can I do? If I had answers I would provide them to you and Mom. ( sidenote: shes down to 94 pounds and was hospitalized last week. Fuck you Lupus).
    I love the comparison to Pink!! Both of you are strong KICK ASS girls that can take on whatever your going through with fierce determination.
    I am praying for you. Praying for Steve. Praying for you and Steve. Love you girly and I miss you. Praying that McDicky can figure out what the hell Lupus is up to!

  2. This made me want to cry. You are a warrior, and so is Steve, but I wish you could both just not be sometimes, and not because you can't be that day (I know you have those days) but because there's nothing to be a warrior THROUGH that day.

    Love you. Always here, just a text or short drive away.

  3. AwesomelyOZ says:

    Oh man i'm so sorry to hear about all you're both going through.. it must be very hard for Steve but it's good that you have him.. And it's good you seem to be complimentary instead of similar in personality traits. Wishing more than the best of luck at Mr. McDicky and hope he can give you comforting answers.. F Lupus for real that's so devastating. Keep hope alive and hope more good days are ahead for you love!! Take care lovely MJ, let me know if you need anything -Iva

  4. tears welled up as i read this. you are both SO STRONG for pushing through this. it says a lot about the foundation of your relationship because despite all the crappy cards life is throwing at you, you're both there for each other.

    i wish you more good days then bad and that this phase of flare-ups subside very very soon. xoxoxoxoxoxoxoxox

  5. Rachel says:

    I'm so sorry you're having another rough week. Yes, "hard is hard," but some do seem to have it harder (more hard?). I hope your doctor can figure this one out! Let me know if theres anything I can do!

  6. Gwen says:

    Oh honey, I do love you so, and even more because you're being honest and letting out all this shit. I fully believe that no matter how bad things are, there's someone who has it worse, but that doesn't mean I won't bitch a little bit if I have a nasty paper cut (those suckers HURT) or bitch a lot when I have bigger shit to deal with. You go right on and whine (even though I really don't consider it whining) – it's your blog.

    Here's to more good days and to McDicky figuring out what's going on and earning back his pedestal space. xoxo

  7. Caitlin A says:

    Ah man Marla, I'm so sorry about this. I admire you for maintaining your sense of humor and wit through all of this and it's one of the reasons that I think you're amazing. Also. "whiny" is complaining about your iPod running out of power, not talking about some very real shit that you guys are going through together. Lots of love to you. <3

  8. I don't have any words that will help you but I love you and I'm always sending good thoughts your way! Big hugs to you!!

  9. first off let me say, welcome back, i have missed you so so much my dear friend. i'm sad to see its not on happier news but as always you manage to say so eloquently what needs to be said. I can't tell you how many times I've struggled with the idea that Dave and I might never be parents. and while it's not on the same level as you and Steve are on, its still terrifying to think that his whole life could change because of my health problems, and the notion of that kills me. luckily we're both married to amazing men, I was hoping you'd be past all this too, but just like Steve, I'll be here for you if you need me.

  10. I don't know how many times I stopped and started reading this because of the tears in my eyes! …you are one of the strongest people I know and you make me want to be a better person! I'm so glad you and Steve are pushing thru together because I hope you know as much as you are lucky to have him ..he is just as lucky (if not luckier haha) to have you!! Xoxoxoxo keep your head up as always!!

    • MarlaJan says:

      I hope you can take this joke the way I mean it, out of love. But I always joke to poor Steve "Damn babe, you're 0 for 2!" Thanks for you sweet words (and sorry to make you cry), and I do know how lucky I am. The fact that your family welcomed me with open arms without any weirdness just shows what a good man he is. But he is pretty lucky <3 <3

  11. Brandi says:

    Marla Jan….you are amazeballs with your truth. I can't imagine how hard it is to write down those feelings and push publish, but bravo lady!!

    I actually did go through a separation and divorce when that song and came out and GIRL I sang that shizz at the very tippy top of my lungs! Also Beyonce's If I Were a Boy was popular at that time and it struck a chord with me as well. While I'm not a Beyonce fan (I just don't get the hype, don't hate me) that song was exactly what I needed at that time. Marriage is stupid hard (see above about my history with it…haha) but the fact that you and your husband decided to stumble through life together is so awesome and something that a lot of people just decide not to do.

  12. Kay R. says:

    You definitely are a rockstar and so is your husband. I am so sorry to hear about it flaring up again. It must be so tough to deal with day in and day out and keep a positive attitude. You are strong and I wish you all the best at McDicky's.

  13. Ella Ralph says:

    Oh my, reading that broke my heart a little from all the way over here! I hope you get some answers from your doctor quickly!

    PS – I was always so happy that P!nk and her hubby decided to stay together and I'm glad you guys did too 😉 xxx

  14. I am always so impressed by how well you are able to take on everything you have been going through. Never apologize for how you feel because you have the right to feel how you want to. Sure people may get offended but those who care will understand. It doesn't mean other people's struggles don't matter; just means that you are dealing with things the best you can. Medical problems are annoying and inconvenient, they mess with our lives and are completely unfair. Thank you for being so transparent in ever facet of your journey. As you sad, there will be good times and bad times. I'll always be around the way in blog land if you need to vent and I'll continue to support you in any way I can.

  15. GYAH I freaking love Pink and I love you and your blog. Prayers/thoughts/good vibes your way

  16. This song helped me through hard times, too. 🙂 Love her. 🙂
    And I love YOU. And Steve does, too. Relationships aren't always rainbows and butterflies. And personally I wouldn't want one that was. Seeing someone at their "worst" and still wanting to be with them – that's something special. It's not always easy, but it's worth it.

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