Keeping my Head Up – Life with Lupus

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So, I’m a mom. That is my primary job. And I love it. I think of myself as a human version of the Little Engine that Could.

“Mommy, I need a new outfit for cheer tomorrow.”

“I need water, I need toilet paper, I need you to get me dressed.”

“I need to go BOO every single one of my friends before Halloween.”

“My class needs help for the holiday party.”

In my head, I feel like I am on repeat with the thought “I think I can, I think I can,” all day long. And that’s ok. I love the chaos. I’m used to it, and I thrive on it.

One day, shortly after my children started their summer break this year, I found myself unable to meet their demands and match their energy some days. I was tired, like, bone tired. The kind of tired you can’t shake off. I woke up each morning with excruciating pain in my arms and fingers, I couldn’t even make a fist. Then flu like symptoms set in – aches, pains, neck and shoulder stiffness and numbness. I tried to get passed it; ignore it. I went into my doctor for bloodwork. Nothing showed except a positive factor for Rheumatoid Arthritis which I later realized amounts to zilch. Then, right after starting school again in July, I came home from taking my daughter and had overwhelming chest pain and nausea. That was it, I needed answers.

I sought a specialist who ran me through a gamut of tests. I waited months for answers, each day, living with the pain. It was hard to be the Mommy I wanted to be when I was frustrated with my new limitations. I had barely enough energy for basic things, and as we all know, so many unexpected occurrences come up with kids. Bath time, getting them dressed, opening jars to feed them lunch, all took an unnatural toll on me, so when Garrett had a tantrum at Target or Sawyer needed her hair put back in a ponytail one day, well, it was just that extra irritation I couldn’t handle.

Finally the first week of October brought an answer. I have Lupus. It wasn’t a good diagnosis. Definitely not what I was wanting to hear. But it made sense. And I wasn’t shocked by it. What it did do is give me peace of mind. And I am on a treatment plan to help me manage symptoms.
Some days I need help now. I need to ask for it, and stop trying to be the Little Engine that Could. Because the truth of the matter is that most days I lose steam fast. I know I will start feeling better soon, and I have a very positive outlook on what’s ahead, because I caught this early and plan to stay on top of it. But moms need support on regular days, so I’ve needed it tenfold lately. If you’re a mom dealing with a health problem, I have so much respect for you. I never knew how hard it truly was. I’d love advice on what you do on your tough days. I’d love to find support through others or be a support, heck, I’d even love to hear someone tell me how they find humor in it all.

So chime in and let’s chat! I’m a good listener and always looking to give or receive a smile!

4 COMMENTS

  1. Hi Staci,
    I am also a mom of young children and love doing it all for everyone, but I also have a chronic illness, Crohns Disease. I am so sorry to hear about your diagnosus, but I know the relief of finally knowing it’s not in your head and there is a real medical diagnosis.
    My disease definitely goes in phases, so there are months that I am symptom free able to do anything and everything for everyone, followed by weeks in the hospital and a complete clearing of my schedule to come home and try to simply sleep. I get severe arthritis and spend way too much time in the bathroom so i literally can’t leave the house. I’ve been so fortunate to have both my and my hubby’s family closeby so we rely on them a ton! My husband is a fire fighter so he’s gone for 24 hours every 3rd day, and I simply could not do it without them. As hard as it is, you have to find a support that you can call anytime and that you can learn to ask for help.
    The other thing I have come to realize is there are always seasons. I missed several class parties for my daughter one year and I was devestated, but there were more parties the next year. The things I missed were crushing at the time, but I started to realize that I was still with them and could be present in their lives at home. I made a bigger deal about the things I had to say no to than they even felt about them.
    Give yourself lots of grace as you learn to manage your disease and adjust your schedule and expectations. Learn to say yes to the few really important things and there will be someone to do the rest, I promise. If you ever want to chat more, feel free to email me, but I’ll be praying for you and your family during this adjustment!
    sincerely,
    Becca

  2. Becca,

    Thank you for your response. It really rang true for me, as I can relate to feeling like it was all in my head. Such a relief to learn there is a reason for the pain, so you can move forward with more clarity and a plan. It can be so rough to ask for help but I am also learning to do so and it’s kinda liberating. 🙂 We too have family in town and that helps tremendously. I am no stranger to IBD, I have Ulcerative Colitis as well and I know there are definitely seasons as you said. You need to really enjoy the good days and not beat yourself up for missing things on the bad days. A healthy mommy is a happier one for sure. Thank you for your kind words and prayers, back at you! Keep in touch!

    Staci 🙂

  3. Staci – sending love and strength to you and your wonderful family! I know you can beat this! You are a strong and positive woman and you shall overcome! XO Esther

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