Living With Lupus

Being My Best Self

First, I apologize for not being around lately. I am just getting started in the blogging world, and since my content is largely around my furniture makeovers and home remodel, I have been more focused on completing new content for you. I promise there is a new blog post about furniture make overs coming very soon…like probably tomorrow, then another two right on it’s heels. I ran into a problem with my writing because I was doing a project, writing about it, and then starting a new one. Then if things like weather, or my health gets in the way, the work stops and that means I have no content. So I took a step away to get ahead of the eight ball a little bit here. So just hang in there with me, I got some help, so you will be seeing more content very soon.

Speaking of health… I haven’t talked a ton about myself or my disability, but I have had a few women reach out to me and ask questions, and if with such a small following that is happening it probably is more prevalent than I realize, or than any of us realize.

Living with Lupus is not easy. Were that my only problem it would probably be easy, but let’s just say that my hot mess blows up the charts, it doesn’t just go off the charts. I have been living with disease since I was 23 years old. I am now 46. Lupus is complicated. I could look perfectly fine and feel like I’m dying. When the people around you don’t understand what is going on with you or take the time to listen or educate themselves it makes it even harder.  This is me in bed during a flare that lasted over three years.  Do I look sick to you?

There are several different kinds of Lupus, and Lupus affects every person differently. There are some forms that only attack the skin, some only attack joints, then there is SLE which is Systemic Lupus Erythematosus. This is what I have. SLE is the worst kind of Lupus to have because it attacks everything…because it is systemic.

Don’t worry, I’m not going to talk about all of my individual issues due to Lupus. I want this post to be about what I do to cope with my disease and how I live with it. If this doesn’t pertain to you, please just scroll by. But if you are newly diagnosed or disabled, I would like to share with you what helped me and point you to some resources that I found invaluable in getting on with the business of living.

Number 1-Educate

The very first thing you need to do is educate yourself about your disease. DO NOT depend on Dr. Google to help you. When I say educate, use resources that are dedicated to the research, diagnoses, and understanding of your disease. The first one and most important one, is your Rheumatologist. If you don’t already know, this is what will become known as your Lupus Doc. I am very lucky in that my Lupus Doc., and most share this, is also an Internal Medicine Doctor. Why is this important? Because for insurance purposes, they can directly refer you to any specialist you need. Say for example, I’m having a flare and it is effecting my kidneys, the Lupus Doc can directly refer me to Urology and the insurance company usually doesn’t block the referral. On the same note, if you are seeing a Family Medicine doctor, switch immediately to an Internal Medicine doctor. The copay for a primary care doctor is drastically lower than that of a specialist. A family medicine doctor cannot write for prescriptions or treat you for any acute issues you have. An Internal Medicine doctor however, can write for a steroid burst, or an antibiotic if your Lupus causes a kidney infection or pneumonia without having to send you to a specialist which will save you a ton of money.

The very next resource, which is great for finding other resources is Lupus.org. They have great resources to research you illness, and also can help you find local resources, like doctors, support groups, vocational rehab….it goes on and on.

Outside of those two, you will not learn anything better about what you are dealing with. WHICH MEANS STOP LOOKING. If you start scouring the internet or listening to stories, you are going to freak yourself out. Do people die from this disease? Yes. But you can die from a common cold. Don’t make things worse by fretting about it. Face the problems as they come. Don’t create them.

Number 2-Advocate for yourself

This is the biggest issue I hear all the time: “I don’t know what to do, I’ve been to this ER and they said this, then I went to this ER and they said this”

STOP! First, do not utilize the ER as a primary care physician. Emergency rooms are for emergencies. If you do have to go to the ER, go in knowing they are going to treat the acute system. They are not there for a long term treatment plan. Utilize your team. If you need pain management, talk to your doctors about it and get a referral. All too often we get flagged as drug seekers, and once that happens they are no longer focused on treating the presented symptom, they are focused on getting you out of the ER with no medication being administered. THAT BEING SAID, you need to find your voice and fight for yourself. If you go to the doctor or emergency room because you can’t breathe and they say “Yeah, there is a bad cold going around” or “my allergies are killing me too”, remind them that you have Lupus and ask about a chest x-ray and labs. This helps them remember the full picture, and keeps you from going home with something serious that escalates because you didn’t speak up for yourself.

I will share a true story with you about me just to demonstrate this. I was at work, I felt like my leg was falling asleep, so I stood up. As soon as I stood up I hit the ground. Of course, they called 911 so they wouldn’t have any liability. The ER doc said I stood up too fast and discharged me within 15 minutes. I still was feeling disoriented and now my face and arm were tingly too. I walked straight across the breezeway to my doctors office. I had a massive stroke that caused paralysis on my left side. Luckily, my doctor caught it quickly because he saw me as a whole and got me TPA, a clot busting medicine, which just left me weak instead of paralyzed. He also caught the hole that the clot that traveled to my brain had put in the atria of my heart. Had I just headed home as the ER doc suggested I may not even be here.

Number 3-Find what works

You can’t just sit around being sick and worrying. Find an outlet. Mine was easy, I started renovating my house, painting furniture, and blogging about it. Find something that will keep you active, and that serves as an outlet for your anxieties, because living with Lupus will give you anxieties. You will worry about being in a flare, when you aren’t in a flare, you will worry about when the next one is coming. So find something you love to do and do it.

Get some support, a support group, or people who understand and are empathetic to what you are dealing with. You need someone to freak out to that is going to tell you it will be ok. I am lucky that my family educated themselves and have a Dad, Brother, Daughter, and Nephews who get it and support me wholeheartedly in everything. It wasn’t always that way though. You need to understand and accept not everyone is going to get it. That’s ok. The people that truly care about you will come around eventually. Just give yourself a little grace. If your body is telling you to rest, rest. If you can move, move. I always remind myself on those days when I really just don’t want to get up and go that the number of days I will be able to is limited and to live while I can. Not being morbid, I’m just saying.

Pray. I pray for the strength and understanding to deal with anything to come. I pray and thank God for another day on this earth every night. The most important thing to remember is this is going to be a war and you are going to fight it for a long time. I tell everyone, that most days I am stronger than this disease. I am in pain every day, where I used to lay down and whine about it, now I get up and power through it with pride. That pain means I am still alive and still in the fight.

I hope this was helpful to those who needed it. I will keep you all in my prayers that God keep you safe and protect you and give you the strength for the battle ahead. If you have any questions or comments, drop them in the comment box below and I will respond as quickly as I can. You can utilize any of my social media as well. I respond to those almost instantly.

Hope you all have a great night and I will be back soon with a round up of more than 20 of my favorite furniture makeovers. Until then, God Bless.

Tina Marie

Olde Made New

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