Luck Fupus

A lupus blog…

It’s not always rainbows and butterflies…

Happy Friday Eve, my loves.

Next week is my 6 year anniversary. A lot of you know that I started to get sick with lupus just a mere few weeks after we returned from our honeymoon, so it sometimes feels like we never really got to have that newlywed “honeymoon phase.”

I wrote a post in March 2013 about how hard it’s been on our marriage, and I want to share it with you today. This has nothing to do with my writer’s block, by the way, I was planning to share this again for awhile. A few things have changed since I wrote this post, most notably, my undergoing a tubal ligation in November of 2013. I apologize to those of you that have already seen this post (wow, that means some of you have stuck around for a long time), but I want everyone who reads it to understand how hard dealing with chronic illness can be for all involved parties. It changes every aspect of life exponentially, not just for the sick person, but those close to him or her.

*****

Marriage is tough. It’s a full time job. The people that tell you “Oh marriage is SO easy,” are lying. Through their teeth.

Don’t get me wrong, I LOVE being married. It comes naturally for the both of us, and we mesh. We are oh so different. Yet somehow, someway, we work.

But, things come along to test the waters: it may be someone you feel just “gets” you better and says the right things, a hot new secretary, infertility, your high school significant other you reconnected with on Facebook, a career move, tragedy, illness…

After an amazing honeymoon in Saint Lucia, Steve and I returned home, ready to start our married life together. We were already living in sin, so to be honest, not much changed post-wedding; we had nicer pots and pans, and I had a new last name.

We quickly got back to our groove of working hard and playing hard. Steve’s company moved to a fancy schmancy building, and I was working full-time on a busy surgical/trauma unit and had just enrolled back in school full time towards my Pediatric NP. Yet, within a matter of weeks, lupus (well, it took MONTHS to learn it was lupus) came along…
MeLupus
Just a few short weeks after returning from our honeymoon, that time when you are supposed to be lovey dovey, disgustingly sweet, and all over each other on the kitchen floor…
I went to bed like this 
(sans make-up and cute hair-do)
And woke up like that.
Separated at birth?
I didn’t have a reaction to seafood (thank God!) like Mr. Alex Hitch. I went to bed perfectly fine the night before, and rolled out the next morning looking like the Stay Puft Marshmallow Man. I took that flattering self-portrait 2-3 hours after waking up, and I had to sit up straight waiting for gravity to take effect and drain some of the fluid before I could somewhat open my eyes. 
To this day, I can still feel the pressure of the fluid on my eyes and nose. It was awful. Not pain, per se, just so very uncomfortable. It finally went away (no, I didn’t rush to the hospital like any normal person would do) and I figured it was just a weird, one off. The human body does strange things. 
I went to work for night shift, came home, slept for a bit, and…
Stay Puft Strikes Again…
Which led to
SMILE! You’re on Mystery Diagnosis!
Almost one month to the day of returning from Saint Lucia, I wound up in the ER, which began my long, emotional, physical journey with systemic lupus erythematosus. 
I wasn’t diagnosed then and there. That’s far too easy. It would take another 6+ months of CT scans, MRI’s, swollen body parts, pain, bones scans, medications, x-ray’s, spinal taps, blood draws, specialists looking at me like I was crazy, me thinking I was crazy, ER visits, taking time off work, and hitting The Googles to finally get a diagnosis.
  1. Systemic Lupus Erythematosis
  2. Immune Thrombocytopenia Purpura
  3. Acquired Angioedema (it’s very rare, and I couldn’t find a reputable site for this)
Over the years I have received additional diagnoses and have had major organ involvement, but these were my three original. Three chronic, extremely painful, potentially life-threatening, incurable yet invisible diseases. Fantastic.

I learned that while I probably had it for quite some time, being out in the sun on my honeymoon is what triggered this initial lupus flare. Exposure to ultraviolet light for extended periods can elicit the onset of disease.

Great. My body was literally rejecting the idea of marriage. Like when Carrie and Miranda try on tacky wedding dresses to get past her jitters of marrying Aidan, and she breaks out in a horrible rash at the sight of herself in a wedding dress.

Only my rash wasn’t cured by drinking cosmos with my girlfriends. And I’m sure if my friend had to rip a wedding gown off me, my ass would have had to pay for the dress.

You can imagine the strain this put on my month-old marriage. I was used to being in and out of the hospital because of my heart defect, but this was unfamiliar territory for Steve. Aside from when he was born, I think the only other times he was in a hospital was for a few minor hockey injuries. I’ve never seen him look more uncomfortable than those long hours sitting with me in the ER.
Once I got my diagnosis, it was a flurry of different specialists to get my disease(s) under control. I don’t think he ever accompanied me to any of my appointments. What I then thought was him not caring, I now know is quite the opposite. That was his coping mechanism. If it wasn’t in plain sight in front of him, than it didn’t exist.
I would try to talk to him about the diseases, my medications, my doctors appointments and he would zone out. He never had any questions, nor did he have any idea what to do for me on those horribly painful nights.

It was frustrating, and I didn’t know how to get through to him. Of course, I never came out and asked him to come. I’m stubborn. I wanted him to want to come with me. But, let’s be real. Sometimes you just need to spell it out in plain English.

There were so many mistakes on both ends.  When we talk about that time now, we know how different things could have been had we just communicated better. 

About 9 months after my first ER visit, I had an abnormal pap smear, and after additional testing, I was told by my gyn to see a gynecologic oncologist. Luckily (insert sarcasm) both my parents are star patients at Fox Chase Cancer Center, and after 3 quick emails, I had an appointment with one of the best gynecologic oncologists in Philadelphia. 
I went alone.
Brie offered to go, but I was holding out hope that Steve would call me and say “pick me up on your way.” 
He didn’t.
I never want to feel what I felt that day ever again. Alone. So alone. This was Fox Chase Cancer Center. They treat one thing, and one thing only. I took a deep breath, and entered the office.

I vaguely remember signing in, I took a seat, and noticed everyone around me. In pairs. Women with their husbands, boyfriends, lovers, brothers, sisters, mothers, daughters. Women completely bald, frail, with their ports and Med-Comp catheters hanging out. Women with IV nutrition going into them through portable pumps. They all had two things in common; they all had cancer, and they all had someone by their side.

My name was called, and I went up to the receptionist (I remember she got my name right and actually called me Marla… not Maria). We went through the normal doctor’s office sign-in motions; insurance card, copay, sign the HIPPA forms, and…

“Marla, who is your support person with you today?”


I fell apart. Sobbing. Ashamed, angry, scared and alone.

I never want to feel what I felt that day ever again.

Part of me hates airing out my dirty laundry like this, and I feel like I’m throwing him under the bus. My husband is a caring and loving person, and I will never find anyone that treats me better and puts up with me provides for us like him. I’m not that naive, clueless wife making excuses for her absentee husband. He wasn’t out doing things he wasn’t supposed to be doing. I knew he wasn’t good at handling these type of situations when I married him. I’m the stronger one, and I’m fine with that. But at the time, I only wish he could have gotten past his reservations with it all to be there for me. I thought this whole marriage thing was about compromise.

It was hard to remember that while I was the one going through all this physically, he was still going through a lot emotionally. I was falling apart in front of his eyes, and he tells me now he was so scared. Little did I know he was making plans to take on as much side work as possible so I could stop working if it got to that point, talking to HR to get me on his health insurance, and paying off debt faster so things would be easier down the road. Doing those things were his way of dealing, and his way of supporting me.

But he never told me he was doing any of that. Again, why communication in any type of relationship is so important.

I was so bitter, and I did everything I could to push him away. He began to ask questions, and I would give him unclear explanations. I wanted to hurt him. I got work friends to hang out after so I didn’t have to go home. I loved my night classes. I found other people to confide in. I let myself lose sight of what was important, and gave up on him.

I remember one night I was crying (in both our defense, let me say that the amount of Prednisone I was on made me crazy. Prednisone can cause psychosis and I’m pretty sure I was close) and he was trying to help me. He asked what was wrong and all I could do was open the medicine cabinet, point to the 23 bottles of prescription medication with my name on them and scream “What the fuck do you think is wrong?!?!?”

I can truthfully say we are in a much better place, but it took a looooong time to get there. We went to a counselor together, and I went to a counselor on my own. I moved out for awhile. We were as close to becoming part of that 50% divorce rate statistic as a married couple could.

Giving up was too easy, the coward’s way out. Anyone can get divorced. I’ve never been a quitter, and I know I was raised better. It takes balls to fight for what you want, and realize what’s important. THAT’S the hard part of marriage. You can let the obstacles tear you apart, or you can learn from them.

Slowly but surely, we worked it out. I was able to forgive. Wounds started to heal. I told him what I needed in a partner, and that he needed to learn to bite the bullet and be there for me, no matter how uncomfortable it gets. And I would always do the same for him.

He comes with me to important doctors visits. He doesn’t need to say a word, just be there to hold my hand. He always offers, and I know it’s not just because he feels he has to. For routine visits it’s easier to go by myself, but those times when I need him, he is there.

We go to lupus support groups and seminars, and I really think it helps him just as much as it helps me. He takes part in discussions, asks questions, and does research on his own time. It’s a comfort to meet people going through the same thing, and I think it helps give him a better understanding of what I go through.

Except for when I wake up looking like Hitch, I look fine on the outside. I don’t “look” sick. That’s the thing about invisible illnesses. They’re invisible. I look at pictures from the past couple years, and even I have a hard time believing there is an all out war going on inside my body.

I never played the sick card. If anything, I played the “lupus can’t beat me!” card. I spent so much time fooling myself and everyone around me that I wasn’t sick, that it’s no wonder my husband had no idea what to think.

The same man that was once afraid to touch me, now buzzes my head with the concentration and precision of a barber. We laugh the entire time.

You take your marriage vows, and you say “in sickness and in health.” In your mind, you imagine the sickness part won’t come until after 60 years of wedded bliss together. In our case, it was after 26 days. It’s been five years, one week, and five days since we said “I do,” and I’m quite certain we’ve had enough health issues for any one lifetime. We were dealt a shitty hand so soon into our marriage, and it drastically changed everything we had planned.

Unless my diseases become better controlled, kids can be crossed off our list. It’s far too risky to get pregnant, but we had discussed adoption/fostering or egg donation and surrogacy. Sometimes I literally can’t get out of bed, and taking care of a little one just doesn’t seem feasible. That wouldn’t be fair to a baby, Steve or myself. It kills me. I hold my friends’ babies, and at times have to fight back tears.

The tropical beach vacations we always talked about taking will never be a reality. The sun is my worst enemy, and can trigger pain/lupus flare so bad I’m in bed for a week. Trips to Ocean City consist of me covered in SPF 100, wearing UV protective clothing, and a big floppy hat. We sold my beloved convertible.

We’ll never climb Mt. Everest together.

Just kidding, I would never do that anyway!

There are always going to be detours and dead-ends, and things won’t go as expected. That’s life. It’s far too easy to lose sight and give up; to become that dreaded statistic. We are far from perfect. We’ve come a hell of a way, yet we still trip up from time to time. That’s human nature. But, if you’re lucky enough to find someone willing to stumble along with you, grab their hand and hold on tight to each other. It ain’t always gonna be pretty, but in the end, it’s always worth it.

Comments

  1. oh marla i love you so much more for sharing this! that's the thing with diseases – they either tear you apart or bring you closer together and i'm so glad that you guys didn't give up.

    you are such a strong woman to have gone through all of that (and still going through) and your positivity is truly inspiring.

    xoxoxo

    -kathy
    Vodka and Soda

  2. Thank you for sharing your story, Marla!! The enemy will use anything to tear marriages apart, and I'm so glad to hear you and your husband are so much stronger now going through this. You are so right about fighting for what you want. Marriage takes works, and those marriage vows are serious!! It breaks my heart though about not being able to have a baby, but I hope for you that either you will really feel the pull to adopt or your illness will be manageable enough that you will be blessed to carry a baby! Big hugs to you! You are just beautiful inside and out…so glad I found you out in blog land!
    Eva Marie

  3. Cheriese says:

    Bless you for sharing this, I'm in tears over here woman!!
    I wish I had the words to tell you how incredibly strong and amazing you are and how much you inspire me, I feel like that doesn't cut it at all, ahh I just want to hug you! You're wonderful xxxx

  4. Jesse is a lot like Steve. All while I feel like he isn't caring enough about our infertility journey, he is quietly paying off debt, finding ways to save us money….and just being strong. For me. For us. It's a good reminder that we likely won't ever respond the same way to adversity. And that's ok. Most of the time. Except when it's not and then I flip out. Just kidding. I never do that. Just kidding. I totally do.

    Love you, pretty lady.

  5. Joey says:

    This made me tear up. This isn't airing your dirty laundry–it's talking about REALITY. So many people only post about the butterflies and rainbows when in reality their marriages could be falling apart and we'd never know. You guys are going through this together. And like you said–when you say those vows "in sickness and in health" you just never assume–especially when you're like me and got married at 23–that the sickness part would ever happen. We went through something a little scary this past year–and I kept forgetting that as scary as it was for me–it would be equally scary for him–until one day he came home from work, found me in the bed because I just didn't have any energy and he came over–smothered me in a hug crying asking what he was supposed to do if I wasn't around anymore. It was only then that it hit me. He was carrying it all around with him, too. Your closing paragraph is just beautiful. And so true. It isn't always pretty. In fact a lot of the time it's just plain scary–but having someone there every step of the way is just so worth it.

  6. Steph G says:

    I'm so glad you shared this. A story like this can help so many people that are facing something similar. I think it's amazing that you two stuck together and found a way to lean on each other and learned so much. You are such a strong woman and are truly inspirational 🙂

  7. Caitlin says:

    Love the honesty in this post especially as I imagine it was tough to write.

    I think some people (it seems to be men a lot, I've noticed) have a tougher time anticipating feelings/needs/wants. It's not that they don't care, they just don't think "she'd really want me there for this" like a lot of women do. I know if Rob was going to a cancer clinic he wouldn't really care whether I was with him or not as long as I was waiting at home ready to hug him, if that makes sense. I think a lot of it is a love language thing. Doesn't make it any easier…and I'm glad you guys have gotten into more of a groove. <3

  8. Well. I shouldn't have read this at my desk. Because now I'm a weepy mess. Glad I didn't wear eyeliner today. This is so beautiful and just inspiring. I'm so glad that you both found a way to work through all this. Lupus is crazy. All the complications and twists and turns it takes. I've been there and I can't even imagine what its like within a marriage. To marry a person who seems fine, and then suddenly one day still looks fine but can't even get out of the bed. You are so strong. You man is strong too. To put the foresight into paying down debts, and working more. Gah I just love this all so much. I'm going to go fix my face now.

  9. oh MJ, you never cease to amaze me. I love your strength, I really truly do.

  10. this is seriously an amazing and inspiring post. this is a true testament to both of y'all's character. the fact of it is, there are hard times but despite the very very tough times you got through it together for the better.

  11. Stephanie says:

    I love this post. I always wondered how he handled all this, I knew you were really sick right after your honeymoon. He's a stand up guy that Steve. It really doesn't throw him under the bus, he did good. I doubt many men would be able to handle this like he has, and that's awesome.
    And you're awesome too.

  12. Rachel says:

    This had me crying. Thank you for sharing your story. I'm so glad you guys have stuck through it all.

  13. You are so amazing for sharing your story 100%. I haven't quite gotten there yet but you definitely inspire me to be more open with my illness and experiences. You and Steve are totally a power couple ! 🙂

  14. It totally impacts everyone in the house and in your life in general. Everyone has feelings to go through and things to react to and situations to acclimate to.

    Happy anniversary week. You guys rock.

  15. You guys made it through this and will continue to make it through life together because you're WORTH it to EACH OTHER! 🙂 No one is perfect. There are things we can't possibly know how we'll react to until the time comes for us to react to them. You live. You learn. TOGETHER. True love at its finest. 🙂

  16. P.J. says:

    There's truly something to be said about true love and it seems you have it. This was quite the piece to read and, I imagine, may have even helped you to get it out there.

    You keep on fighting, Marla. At least you have somebody willing to battle with you! 🙂

  17. AwesomelyOZ says:

    Very amazing and so happy to hear you two have stuck it out together.. I'm grateful my partner is waaaay better at communicating his feelings than I am but I've gotten better at telling him when I need him to come with me to certain things since he doesn't know what I need or want. I'm happy you two aren't in that 50% statistic and hope you two can continue to grow together, which sounds like you are. 🙂 Any big plans for your anni? There are lots of wonderful indoor things you can do – go away to the Poconos? 😉 I hope you find healing soon my love and that you are dealt with a more positive card sometime soon.. <3 -Iva

  18. Kim Turner says:

    First – I'm so sorry that you have been dealt the hand you have as far as illness and disease!!
    Second – I think you are incredibly strong!! And I love that you and your husband were able to work everything out and figure out how to adjust and deal with what would be your new normal.

    • MarlaJan says:

      Hi Kim! Sorry it took me so long to respond, I'm not always the best at keeping up with comments! Well, it's been a very long road for us, but somehow we have come out kicking and screaming. We have our moments, but it's not gonna keep us down anymore!

  19. I can't imagine all of the stuff that you go through. You are so brave for sharing this story with everyone as proof that life doesn't always turn out the way that we expect it to. It's amazing that you and your husband were able to workout through the issues that you faced in the beginning and are now stronger than ever together!

  20. Sarah Farris says:

    This is suck an inspirational post! I had a chronic illness prior to getting married last fall, but everything got worse when a new medicine made me feel crazy. You are so right that communication is key! I am so glad you all weathered the storm and are living life together!

    • MarlaJan says:

      Hi Sarah! Sorry for taking too long to respond, I suck at that! Thank you for your kind words, and I hope and your husband have been able to weather the storm with your illness. I hope you're doing well <3

  21. Rachael says:

    I'm so happy that you and Steve have come such a long way from the early days. The part where you broke down when the nurse asked who your support person was made me so sad!! I know that must have been so hard. I'm happy that you two were able to communicate and figure out that he was actually trying to help, in his own ways that you couldn't see at the time. Thanks so much for sharing your journey!! I love when bloggers get personal, especially bloggers that I love so much!!

  22. Such a sad yet wonderful story, thank you for sharing it with us and happy 6 year anniversary!

  23. I'm fighting back the tears right now. You're such an inspiration! So many have gone through less and aren't willing to fight for their love. I'm so glad I got to read your story.

  24. Marla this post is SO important to so many of us out there fighting alongside you and entering or in the midst of a relationship. I told M that I was sick during our 2nd date but I did not tell him with what. I wondered why he never asked and he later told me that whatever it was he knew I would tell him when I was ready. Lupus puts a huge strain on my life and definitely our relationship but you inspire me SO much to work through it thank you so much. Words cannot describe how grateful I am to you for sharing this post.

  25. holli says:

    Yep, still catching up on blog posts and just now seeing this one from last week. I wish I could give Steve a big ol hug for taking good care of my friend and loving her through all this!
    My mom has to wear a hat no matter what if she's outside. Damn Lupus is taking a toll on her and i hate watching it happen.
    Love you Marla!!

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