World lupus day – an interview with amber from the world sees normal

Today is World Lupus Day and s it is a disease which has some similarities with Rheumatoid Arthritis, I thought it would be a great opportunity to find out more about it. Through the amazing Chronic Illness Bloggers network I have met people who blog about all different health conditions and discovered Amber’s blog, The World Sees Normal, from there.

Amber kindly agreed to be interviewed about her lupus and has given an amazing insight into living with this condition. Lupus is a long term condition which causes inflammation in the joints, skin and other organs. There is no cure. The condition can be managed and symptoms can be improved with treatments. Unfortunately, as there are many similar conditions, it can take some time to diagnose, and this makes treatments less effective.

Introduce yourself! Tell us who you are and a little bit about you.

Hey y’all. My name is Amber, I am almost 35 and live in Springfield, MO.  I am a registered nurse by trade, turned blogger. I started blogging about 3.5 years ago after being diagnosed with lupus and a slew of other medical conditions.  Blogging eventually led to doing advocacy work, which I truly have a passion for.   

When and how was your lupus diagnosed? Was it a struggle to get a diagnosis? What were your initial symptoms?

The road to my lupus diagnosis was LONG and CURVY. At the time my symptoms started I didn’t know that was what was going on. When I was 16 I was diagnosed with the Epstein-Barr Virus (Aka Mono), which ended up lasting for SIX months.  Mono doesn’t last six months.  But the pain and fatigue were debilitating.  However, no further testing was done because I was a teenager and the drs blew off my symptoms.  For the next twelve years I had on again off again symptoms. Finally in 2012 after a 6 month battle with severe battle with respiratory symptoms, fatigue and some joint pain I was finally diagnosed by accident.  After a five day admission for a respiratory illness that could never be diagnosed. I spent months on high dose steroids, inhalers and nebulizers. Barely able to walk 50 feet without having to stop for a breath.  My pulmonologist ran a whole slew of labs including labs for lupus on a whim, which came back positive.  A few months later I was finally diagnosed with SLE.  Being diagnosed was scary and not what I wanted. But it was actually a relief.  It gave me a sense of peace to know that there was actually something wrong with me.  And all the issues I had been dealing with the last few months, and the last decade, weren’t just in my head.  

Can you tell us a little more about lupus and what it is, how it affects you etc?

Lupus is a chronic autoimmune condition.   An autoimmune condition is a condition where the body’s immune system, which normally is responsible for attacking any foreign bodies like germs, instead attacks the body’s normal tissue. Causing inflammation, pain and a whole list of other issues.  

Lupus most commonly affects your: 

Skin

Joints

Internal organs, like your kidneys, heart, and in my case lungs. 

For me lupus exhibits itself by causing a lot of fatigue, joint pain and respiratory issues.  The fatigue is like nothing I have ever experienced. It isn’t just like being tired.  It’s an overwhelming fatigue that nothing cures. No matter how much you sleep the fatigue doesn’t go away.   The joint pain is on another level.  The best way I can explain it is to compare it to the pain you feel when you have the flu. Only multiplied infinitely. 

Outside of the pain and fatigue that most who have lupus deal with I deal with a lot of respiratory issues.   Over the last 3-4 years especially I have dealt with more respiratory illnesses.  During the winter months I end up with bronchitis every 4-6 weeks.  

What treatments (medical and holistic) have you been on? What are you doing now to manage your condition? Are there any side effects?

Unfortunately treating lupus is often a trial and error process. Just like any other condition, what works for me may not work for the next person.  Over the course of the last eight years I have tried several medications that failed, like cellcept and imuran.  I have also tried taking Turmeric which didn’t work for me.  There are lots of non-medication treatment options that I have tried over the years some which were more helpful than others.  I will only share the ones I have found most helpful.  The most helpful have been: heat, hot showers/baths, weighted blankets, massage and physical therapy.  

As far as medications go, my current regimen is Plaquenil, weekly Methotrexate injections & monthly Benlysta infusions.   This has been my regimen for the last several years.  Each medication comes with its own positives and negatives.

For me the Plaquenil has been a good treatment and I haven’t had any side effects.  But you do have to have yearly eye exams because it can cause retinal toxicity.   Which has never been a problem for me.  

Methotrexate can be hard to take for some. I tried taking the pill version and I could not tolerate it, because it made me too nauseated.  So several years ago we switched to the injections. It is still hard on me and puts me down for about a day after each injection. Causing nausea, joint pain and fatigue.  But overall the benefits outweigh the side effects. 

Lastly, I have been on Benlysta on and off since 2013.  It has made the biggest difference for me overall.  This medication has given me my life back. When it is working properly and I am able to get it every month as scheduled I get about two and a half to three good weeks a month.  Whereas without it I am lucky to get a total of one good full week a month. But the days are rarely consecutive.  However, in order to get the infusion you can’t have any infection or sign of infection to get it.  So lately I have only been able to get my infusion every couple of months due to being sick almost all of 2020.  In fact in the last five months I have only had two infusions. So my disease is very active and flaring.  As for side effects, most of what I deal with is immediately following the infusion. In the two to three days following the infusion I deal with extreme fatigue, nausea, joint pain and sometimes migraines.   But again the benefits outweigh the side effects.  

What monitoring do you have to have – blood tests, appointments,  scans etc?

I generally see my Rheumatologist every three to four months and with each appt she draws standard labs. These labs are also important while taking methotrexate. She always draws a CBC to check for any anemia or infection, CMP to check electrolytes, blood sugar and kidney function. C3 & C4 levels to check my lupus disease activity. And a UA to check to make sure there is no protein in my urine which would show disease in my kidneys.  

What symptom would you say us the hardest to deal with?

It’s hard to choose just one, so I’ll choose two.  The pain and fatigue are the hardest to deal with.  

How has lupus affected your life? Socially, work wise, romantically etc?

Lupus affects EVERY single aspect of your life like most chronic illnesses do.  It is hard to keep plans, and for others who aren’t chronically ill to understand.  Having lupus has broken up relationships of both platonic and romantic nature. I have had people who I thought would be in my life forever walk away because they couldn’t handle the changes.  While it hurt at the time in most cases it ended up being the best for me.  

Adjusting to the changes lupus has caused in my work life has been the hardest for me.  Because of my health I had to leave my job as an RN. My body couldn’t handle the stress physically or mentally/emotionally.  It was a tough pill to swallow when I was told that I wasn’t going to be able to work anymore because I had only been in the profession for nine years.  I had big dreams. When I got sick 4 years before leaving the profession I had just accepted a position as a part time, nursing school clinical instructor.  Which has been my goal for a long time.  I loved working with student nurses and new hires on the floor. So I was thrilled when this opportunity came around. But then I got sick.  At that time I was also 12 weeks into my Masters of Nursing Education Program and I had to drop out of that as well.  

What would you like people to know about lupus and how it affects the people who have it?

The one thing I wish people understood about those of us with lupus is that just because we “look okay” does not mean we are.  You can never judge a book by its cover.  We all get really good at covering up how we feel so we aren’t always a Negative Nancy.  So just because I look fine and put together, or don’t physically appear sick doesn’t mean I’m not.  

What advice would you give to someone newly diagnosed with lupus?

There are two pieces of advice I give to those newly diagnosed with lupus. 

1. Find a support group.  It doesn’t matter if that is online or in person but find a group that you feel comfortable in and that you truly feel supported in. Even if you have the most supportive family and friends they can never truly understand what it’s like to live with lupus.  So having a group of people who live with the same or similar challenge day in and day out that you do can make a world of difference.  Even if you never post or share, just knowing that you have people you can talk to if needed is essential.  
2. Track your symptoms.  This is so essential, not only will it help you but it can also help your dr see what’s going on.  It will allow you to see any trends that may be happening.  Like your pain or migraines increase around your menstrual cycle or you seem to run a low grade temp when you flare. Every day you should jot down you pain level, your main symptoms for the day and what you did to treat them.  You don’t need any fancy book to do this. In fact you can use the planner you already have or just a notebook like you used to use in to take notes in school.  Just make sure you are writing it down.  This will also be essential if you end up filing for disability down the road.  

What is your blog and what do you write about? Why did you start your blog and what would you like to achieve with it?

I started blogging the first time when I was first diagnosed.  But mainly did it just for me as a way to get my feelings out. In fact I didn’t even publish most of them.  But after I left my job in 2016 I needed something to feel the void I felt. So I started writing. I never really thought it would amount to much but it has really grown and I have gotten some really cool opportunities because of it.  I would have never thought I would end up a writer.  In fact had someone told me 10 years ago that this is what I would end up doing I would have laughed hysterically.  But writing along with running Lupie Groupies, a support group for those with lupus, and other chronic illnesses, I started 6 years ago. Has given me a purpose. They have, like I said, filled a void I felt after leaving my profession.  

You can find me at http://www.theworldseesnormal.com

Would you believe that Amber apologized for being too wordy?! I absolutely loved her interview and felt it was so informative. I hope you also enjoyed reading it and don’t forget to head over and check out Amber’s blog. I hope you are all keeping safe and doing well,