current read: The Help – Kathryn Stockett
< word of the day: gratitude – a feeling of thankfulness and appreciation. >
Today’s post is really the most personal thing I would want to share. I had big plans for my blog and life in general for 2018 and as you can see by the lack of posts, I wanted to share my journey of why I have been absent for the better part of 2017. I appreciate you taking the time to read this. I promise it’s not too dry or filled with ANY medical terms. Let’s be serious, I’ve been googling all these terms too.
I have Lupus.
Here is my story of how I found out and life since then.
In early August, I got this rash on my face. I just thought it was the bad case of hormones or just me picking at my face too much. (Yay, face pickers unite) I avoid visiting the doctors at all costs so I try to eat healthier and hope for the best.
Come September and I have tried my usual face masks and some new ones to no avail. I finally visit the doctor and was given an ointment and said if it’s there in 3 weeks to come back. To my surprise, it was still there 3 weeks later and from those three weeks, my joints in my fingers were now constantly swollen and in pain. I was extremely fatigued and I could not concentrate for extended periods of time. I was working my day job and some weddings on the weekend and this pain was really bothering me. I was referred to a dermatologist for my rash, which is commonly known as a “butterfly rash” and joint pains. The walk-in doctor mentions “lupus” to me for the first time.
What the? Lupus? Isn’t that what Selena Gomez has? I immediately Google “Lupus” and all the worst possible things that come along with it. In short, Lupus is an autoimmune disease that your body attacks itself. Known as the disease with “100 faces” you can’t determine where it will affect your body or where it originates.
I visit the dermatologist and immediately have a small facial biopsy but he tells me based on his experience and my symptoms, he is 99% sure it is Lupus. The results come back as Lupus and I move on to see my family doctor.
Lupus can take many years to diagnose. In 2016, I spent a week in the hospital for an extremely low blood platelet count. I was told it was just an infection and that was the end of it. It was a very big ah moment for me to understand what I thought was a one time infection was probably Lupus but they could not pin point it to me at the time.
By the middle of October, I could not return to my day job and have been at home. I was wearing hand braces on both hands and my entire lower body was swollen to the point I had trouble standing. I could not concentrate for long periods of time and was always fatigued. My face was basically double it’s size and my eyes were swollen. The earliest a rheumatologist could see me was in January 2018. It was frustrating because I could not do anything but wait and hope someone would cancel their appointment before then.
In November it was my 25th birthday. I was so lucky that weekend the swelling in my face came down and my boyfriend took me away to Niagara Falls to just relax. It was truly the best birthday I could have asked for. He’s the best. (Hey boyfriend!) I had a simple family dinner and I was just happy to have them. I was showered with love and Lupus. I was still waiting to see a rheumatologist.
By December, I was used to the joint pain and swelling, I guess? Sometimes it would be there and sometimes it would go away. I would be optimistic I could go back to work and the following day, I could barely get up myself. Luckily, I was able to get an appointment to see the rheumatologist earlier! It was December 18th, a significant amount of time before the original scheduled date. The visit was long, as expected, and I was given a prescription to start my treatment. I am feeling optimistic, it’s before Christmas and maybe I will be able to go out and about. Little did I know I would have an allergic reaction to the medication. Just my luck right? The swelling around my lower body intensified and then came the nausea and vomit. To top it all off, my lips were bigger than Kylie Jenner’s at her prime. December 30th was spent in the Emergency Room with an IV in my arm. New Years Eve was counting down with my big chunky lips.
I visit the rheumatologist after the holidays and he prescribes me a new medication and informs me I will be seeing a nephrologist (kidney specialist) based on my blood and urine results. I get scheduled for an ultrasound and X-Ray. Everything happens quite quickly as I go for the tests on Monday and see the nephrologist the same week on Thursday. I think to myself it must be serious if it’s all happening so quickly. The nephrologist is really nice and informs me that my kidneys are being affected by the Lupus. My blood pressure is higher than normal and protein level in my urine is very high. I get prescribed more medication and they need to find out what is going on ASAP. What does that mean for me? A kidney biopsy. It’s overnight stay at the hospital so they can monitor me after.
The whole procedure was easy and they give you pain killers so it doesn’t hurt. I was placed on bed rest after and let me tell you it is very weird to have your urine monitored while on bed rest. Let’s just leave it at that. My back is still a bit sore from it all but it’s getting better everyday.
We have finally reached the present day of this journey. The results are in and I am told the Lupus Nephritis is very active and I needed to be given three high dosage steroid shots, 10x the dosage of my current medication to hopefully put the Lupus to sleep and then start a treatment plan for the next 6 months. I am to anticipate a lot of trial and error and calculations for each pill, every two weeks. The side effects of these pills for me are extreme fatigued, heavy bloating on top of what I have now, blurry vision and potential acid reflux. My blood pressure is being monitored as well as it’s been higher than normal.
I can’t tell you how many IV’s, blood work and urine samples I have given and I can’t tell you how many I will have to continue to give in the future.
The costs of these pills are INSANE. I don’t know what works and what doesn’t, it’s been stressful to have to purchase a prescription, take it for one week and then be told to discard it. I didn’t think to have the best prescription plan at work because as a 24-year-old at the time selecting your benefits, I am thinking of spending my money on travelling, saving for my first home and just buying random things on Amazon Prime. (Why yes I do need this metal tongue cleaner.)
It is important to share my journey with you because Lupus can affect anyone. It is more common for women age 15- 44 but it does not discriminate. It can affect lots of organs and it can come fast and mighty at any time.
For me, epsom salt baths have been key with lavender oil. Also, massages to help with the fluids in my legs and abdomen. (Thanks sista) Lupus flare ups can be affected heavily by your mood so really try to be stress free, which is easier said than done. Along with the medication, I am taking additional vitamins such as B-12, vitamin D pills, and liver support pills to maintain overall health.
Since January, I have gone basically an organic, gluten-free, dairy free, low sodium diet. There has been lots of research done on my end to eliminate foods that can cause flare ups and overall can make me uncomfortable. There is no official Lupus diet so it’s again trial and error. It’s expensive but as my immune system is so weak, I really can’t risk it right now.
These are my top foods that are no longer part of my life:
- White Rice – Please understand I am Chinese and that is so sad.
- Pork – Chả lụa – My favourite, made of pork AND garlic.
- Garlic – SAD.
- Nightshade Vegetables – No more mushroom and peppers omelette!
- Cheesestring – Okay, these are bad for you regardless but still I love cheesestring.
I find the diet definitely makes me feel better and it has contributed to not only my overall health but my Lupus health. Don’t get me wrong, I sneak some snacks here and there with the help of cousins, my boyfriend and siblings. Not my mom though, she’s the one that is strict and worries all the time.
Although I currently look like a pregnant lady, I wanted to share some pictures with you and embrace it. I thought it was funny that it really looks like a pregnancy bump so I am rolling with it! It’s taken me a while to be able to feel good about myself again. Lupus does not define me and I can and definitely will kick Lupus’ ass.
It is frustrating to have to temporarily give up on your career, education and life plans. I’ve been itching to try to create content again, I have so many ideas that I want to bring to life. It is just going to be at a very slow pace.
Thank you for being patient with me, reading this and hopefully spread awareness about Lupus to you.
If you have any questions or comments, feel free to leave me a message!
You can also visit http://www.lupuscanada.org for more information.