Amanda Parham's Story

What were the steps leading up to your diagnosis?

I spent several years feeling very sick and horrible. I thought I was falling apart.

At first, I assumed I was just crazy, and everyone else probably felt the same as me, and I am just over exaggerating.

So I ignored it, and when I did go to the doctor the doctor said that I'm too young and healthy and that it's probably nothing, and I'm a female so most likely I don't have any heart problems.

The doctors didn't look into anything, they just asked a few questions and looked at me real quick and would say "You're fine." So I believed them and held it in and thought I was just crazy for feeling how I was feeling.

Finally, I decided to go to the doctor. I met with a new doctor in a new state and told the physician everything I was going through and how I felt.

The doctor automatically scheduled me with several specialists in my area and a whole bunch of blood work. On other days, I went through lots of tests like MRIs, CT scans, EKG heart monitors, brain monitors, and even had to spend the night at the doctor while they observed me while I slept.

This is all I can remember at the moment, but I went through a lot of tests.

My tests came back with some answers and some good news and some bad news.

I'll start with the good. The good new is that my brain looked fine, I don't have any spots where it's not getting oxygen, or I don't have any aneurysm scars or anything bad in my brain. My heart looks good, and my blood work is good besides a couple of things.

I tested positive for Lupus, and celiac disease. The tests results reported my stomach is also damaged and I have partially induced seizures.

What lifestyle changes have you needed to make?

Ever since receiving my diagnosis I eat healthier. No greasy, fattening, and gluten foods. I will admit... I haven't 100% done so, but I'm cutting it out in steps.

I have started to stretch more and exercise more, working my muscles, but not running or doing anything that's hard on my joints because my joints are one of the things that get affected by lupus. Instead, I go into the pool because it's perfect for taking off the pressure of your joints.

I've added some vitamins to my diet, like vitamin D and probiotics.

Probiotics are good healthy things for your stomach your stomach is where lupus originates, so you need to take care of your stomach.

I make sure that I don't take or eat anything on an empty stomach anymore. I always look out for my stomach and making sure that it's not going to get hurt from spicy, harsh or acidic foods.

Who has been there for you? How?

Ever since I moved to Nevada, my doctors have been there for me.

I've been getting a lot of help from my doctors and support that I was not getting before when I lived in Washington. I did have an excellent doctor in Washington, but then she moved away, and I was stuck with whoever.

This made me feel terrible every time I went to the physician. I was nervous and felt horrible because they never listened to me, they never understood what I was saying, and they never took me seriously. I felt like I was just crazy and they were treating me like I was.

My doctors here in Nevada have been there for me which is awesome they've given me answers that I probably wouldn't have if it weren't for them. I am going to be able to get better and feel better because of that, so that is very important to me.

My family has been there for me. Some of my family don't quite understand what I'm going through and my kids forget that I have a disease, sometimes and frankly, so does my husband.

Sometimes they expect a lot more of me than can give. I have to remind them what I'm going through and why I'm not able to do something that every other mom can do and that makes it hard.

They are understanding, and they try to understand, and I do thank them for that.

I have also had some the support from friends which is very important in life to have support from your loved ones because it helps you push through the tough times.

What's your advice to someone else living with Lupus?

If I were to give advice to someone living with this condition, it would be to stay strong and keep fighting.

You can do this – just keep fighting. Lean on your family and friends as much as you can for support and love because you will need it when things do get hard. Sometimes you might feel like no one in the world understands anything that you're going through, and even if they don't, it's okay because your loved ones are there for you and they care about you.

Always get your blood work done regularly and do everything your doctor says unless you feel it is not right for you or if it's going to hurt you. When in doubt get the second opinion.

Don't always take no for an answer. If you feel something isn't right, you need to stand up and say something, and demand tests get done. Don't let them ask you a few questions and tell you you're fine.

What accomplishment are you proud of?

The accomplishments I am most proud of are my three beautiful daughters whom I have created.

They are growing up to be lovely young ladies who will run the world someday and bring lots of love and knowledge.

This world is a better place with them in it, and I can't wait to see what this world is going to be like when they are adults.

Is there anything else we should know?

Try to understand the people who are living with chronic conditions.

This person may need help and support, just because they're not deemed healthy, they are hurting.

People can be sick and look normal at the same time, and you know, I would have thought the same thing before I knew more about lupus and other illnesses.

So please, if anyone can take anything away from this, just know that looks can be deceiving and just because someone looks or sounds like they're happy and healthy – doesn't mean they are.