I’m so happy you found lupussistas.com, but I’m sorry about the circumstances of how we connected.
You were kind of forced into a sisterhood you didn’t choose to be a part of.
Whether you’ve felt the symptoms for the months, even years, but just got an official diagnosis or you just got blood work that led to a lupus diagnosis, I hope this site serves as an online support system for you.
And I hope you realize you’re not alone. First, if you haven’t fully researched what lupus is and isn’t, then go to www.lupus.org and get educated. Education is the key in fighting this disease.
I understand feeling helpless, confused, angry, depressed – and yes, even bit of a denial.
And to be completely honest, I still struggle with this.
Yes, I know the BIG and little struggles that lupus can bring into a life.
There were moments when I didn’t take my meds for extended amounts of time just because I didn’t take my diagnosis seriously and thought it would go away. I believe that God can do anything, but I have to allow him to do it.
I’m still learning about this disease and how to cope with lupus in my work, home, and spiritual life. I’m a wife – hoping to be a mother, with an uphill battle to fight in becoming pregnant and have a healthy pregnancy. I hope that we can teach other healthy, positive tips to live our best lives despite our diagnosis.
Here are a few tips that helped me when I was first diagnosed and that still help me along the way.
1. Get a second opinion. My primary care doctor was smart enough to order a complete blood work up when I started exhibiting auto-immune symptoms, but it wasn’t until I saw a respected and experienced rheumatologist until I officially was diagnosed. Don’t be afraid to be doubly sure that lupus is the diagnosis. There’s a lot of other connective tissue, auto-immune diseases out there, so you want to be armed with the right diagnosis so you can work to feel better.
2. Research, but don’t feed into paranoia. There’s nothing wrong with researching, but early on I fed into every symptom that popped up on every message board and forum. I’m a control freak by nature, something I’m not proud of. Researching that was intended to help me feel empowered turned into paranoia of me looking at every little thing that happened. Bottom line, if it’s a real concern consult your doctor or rheumatologist.
3. Don’t isolate yourself. Yes, a lot of people who don’t have lupus or a chronic illness, won’t understand what you’re going through – especially if you look perfectly normal on the outside.
Make sure you connect with lupus support groups in your area, or if you can’t get out or can’t find the time, connect online with sites like this one. It’s not good, and believe me I know, to try to handle this without talking to someone. Even if it’s just one friend who understands.
Which brings me to point No. 4.
4. Surround yourself with positive friends and family. These people are crucial on how you will view your fight with lupus. You’ll get down on yourself, you’ll want to crawl into a hole, but your parents, sister, aunt, cousins, girlfriends, husband – will be the one right by your side. Whoever it is, make sure they are positive and that they understand the ins and outs of the disease so they’re equipped to do deal in those tough times. And understand, unfortunately, that there will be some who aren’t as compassionate about what you’re going through than others. I have friends who know more about what’s going on with me than some family members, and that’s OK. What matters is that you have their support.
5. Ask questions. Be your best advocate. Make sure you write down your concerns for doctor’s visits so they’ll be addressed. You don’t want to let any concerns linger, because it will not only cause harm physically, but mentally as well. It feels so much better to confront lupus and at least know that you’re being proactive. Don’t feel like you’re being a pain in the butt with your doctor either. They know you have questions and if they don’t seem interested, then don’t be afraid to change doctors. You have a right. If someone wasn’t treating you right you wouldn’t stay in the relationship, our health shouldn’t be any different.
6. Try your best to be organized. I’m not an organizer. God, do I wish was. Even still, I’m working on a notebook with all my test results, which is important since most likely you’ll be getting blood work done pretty regularly. You want to know where you are and how you progress. Being educated about what might bring on a lupus flare in your body is so valuable. That way you can avoid the “triggers” like taking on a heavy stress load or bad eating habits.
7. Stash pills! This might seem like a weird tip, but if you’re not used to taking a lot of meds, then it is easy to forget to take them or leave them at home. After three years of being diagnosed, I am still trying to train myself to hide a day’s worth of pills in the glove compartment, purses, at work, wherever – just so you’ll have backup in case you rush out of the house without them. And it helps to remember to stash them in consistent places… don’t put them in a purse you never use, lol.
8. And finally, be PATIENT with yourself… and others. Remember you’re not a superhero. You will forget sometimes, you won’t always feel at the top of your game. I know I get so caught up and forget to help myself, so I can help others. Take care of yourself, but don’t get frustrated if you don’t see the results right away. Try not to overwhelm yourself with tasks, and again as you’ll read I’m still learning this. Be honest with what you can handle and be honest with those around you. There are plenty of necessary conversations I had to have with my husband, my mother – even my boss about expectations. There’s no point in pretending to be OK if you’re not. It just makes things worse; trust me. I’m not saying don’t move forward and work to get better, there’s nothing wrong with pushing yourself a little. But consistency wins the race, not doing a lot at one time.
I have hope sis, because you’re here. You’re looking for support, you’re moving in the right direction.
Be well. And keep moving forward!
Founder of Lupus Sistas