The Annoying Voice in the Corner
A year and a half ago I was diagnosed with SLE, Systematic Lupus Erythematosus, commonly known as Lupus. In some ways it was a relief as I had been having bizarre symptoms on and off for 10 years. Obviously, though, it is more of a hassle than a diagnosis. At the time I thought, "Well at least I have some answers." I was immeadiately prescribed the drug Plaquenil to prevent any future flare ups, or at least to keep them from getting too bad. I figured I would take the medication and things would be fine. What I didn't realize is how out of touch I was with my body. There were so many symptoms I was having that were from Lupus and I never made the connection, or slowed down long enough to acknowledge how sick I am. This past year and a half has been a steep learning curve in Lupus and in how little I actually take care of myself. My hope is this article will help newly diagnosed people, get me some answers with your feedback and help those who know me who read this recognize my day-to-day struggles.
Just Stay Out of the Sun, Right?
This was my first thought: Medication and stay out of the sun and all will be fine. The week before I had the flare up that caused the diagnosis, I had spent a week cruising the Caribbean, out in the sun all day. "That must be it! That's why I got so sick. Next time we go somewhere tropical, I'll rent a cabana and life will be good."
I quickly found out that it wasn't that easy. As I reviewed the common, or possible, symptoms someone with SLE has with my primary care doctor and my rheumatologist, I realized I had been dealing with lupus for a long time and that I needed to wake up and listen more to my body. You can review the list at http://www.lupus.org/resources/lupus-symptom-checklist. Joint pain had accompanied me as long as I can remember, along with fatigue, mouth sores, red cheeks, light sensitivity, raynaud's phenomena, protein in my urine (I had already been diagnosed with kidney disease) and I had had more miscarriages than children. Now these are just the preliminary symptoms they use to diagnose, along with blood tests. The fun is just beginning here.. There are articles upon articles on how Lupus effects the different organ systems in your body. www.lupus.org is a great resource.
Now what? I have two children and a husband, I work full time, I have other interests... I don't want my life to change. I want to enjoy living! So my rheumatologist suggested I keep a journal of symptoms and I began to see a pattern - fatigued/ worn out feeling, followed by headaches, swollen lymph nodes and GI problems. Occasionally you could throw swollen knees and mouth sores in there too. The Plaquenil seemed to eleviate the mouth sores for the most part. Prior to that medication, I got mouth sores every few weeks like clockwork.
These were the progression of symptoms that meant I was heading into a flare up. The ideal situation is the moment I feel fatigued or over-stressed, I should stop and rest, or at least slow down. However we don't live in an ideal world. I am also using a key word here - "stressed". Stress has contributed far more to my flare ups than any walk in the sun! In addition to a Caribbean cruise, I had also been present at the Boston Marathon bombings in 2013 and had 5 weeks to find a new home the month or so prior to the cruise. Every flare I have had since has been induced by stress. The sun seems to cause immediate symptoms, but I am smart enough to protect myself with UPF clothing, hats, sunglasses, and SPF 50+ sunblock. The best solution is to stay out of the sun entirely between 10 AM and 4 PM. Using these tools the sun has caused a few sypmtoms, but not a full flare.
The flare I had in the summer of 2013 has to be the worst I have had. It included, in addition to the symptoms listed above, the neurological symptoms of numbness in my limbs and confusion. I had obviously let my stress level and exposure to the sun go too far. Yes, I know I did not have a diagnosis yet. But the hardest part of learning to live with lupus is learning to say "No." You need to say "No" to the people you love and the commitments you have made.
I struggle with these choices everyday. I am an active person. I was more active prior to my diagnosis. While I was going through testing for lupus, I changed to a less demanding job. This helped immensely. As a good friend of mine recently said to me, "It's the same reason they tell you to put the oxygen mask on yourself before your children on the airplane. If you don't take of yourself, you can't help anyone else."
She's right. Since the time of my diagnosis, I am giving up putting weight on people's opinions of me at work and in my family. I am trying to put myself first, but as a mother, it is your instinct to put your children first in everything. I know I wake up each day with the best intentions. I get at least 9 hours of sleep the night before (that is what my body requires) and head out the door to be the best mother and teacher (my career) that I can be. Sometimes work, children, money or whatever life throws at you on any given day can cause stress. So I am teaching myself to accept that I always put my best foot forward and that if that isn't enough for them, too bad. Easier said than done, mind you.
I have had 2 flare ups since my diagnosis. I am currently in one now. Both were caused by stress, not the sun, as it is winter in New England. This past fall, short of working less, which isn't financially possible, I took on too much at once. My lymph nodes swelled and I had GI problems that have now added a new doctor to my list of doctors. The week of Chriistmas I could feel another flare coming on, but didn't slow down enough to recognize what was happening. When I went for a routine ultrasound of my lymph nodes the following week, they confirmed the flare. Flares are typically treated with steroids in my case, and an occasional GI drug.
Ultrsounds, CT scans, and lots of blood labs, all become routine in this lifestyle. I am at the doctors between regular check ups and flares, at least once a month, and I know my lupus isn't as active as some patients.
As I continue to live with that nagging voice in the corner saying, "Hi I'm lupus. I'm not going away and if you don't take care of yourself, I'll make you pay," (Can you tell I teach K1?) I am learning to balance my home life, my career and me. In today's fast-paced, instant-gratification society, it is exetremely difficult. I have gone back to restoritive yoga. I was a practicing yogi for many years, until 2008. This helps my joints and my mind. In addition to the yoga, I take meditation classes that address the conundrum of living peacefully in an urban, fast-paced environment. I have tried eliminating certain foods to help with my GI symptoms and have found that eating a lo-carb diet makes my stomach feel better. All of these are steps to wellness on my journey with a new passenger on board, that I can't say no to or it will come at me with avengence. This is just a quick glimpse at my life with lupus thus far. I'm sure I will have more to share in the future.
Symptoms of Lupus Map
Donate to the Lupus Foundation of America
- 1 in 4 Lupus patients are on Medicare or Medicaid.
- 2 out of 3 patients can no longer work full time.
- As of 2008, the annual cost of medical visits, tests and procedures for someone with Lupus was $20, 924.
To donate to the Lupus Foundation of America, please click on the link below:
or got to www.lupus.org
Source: Lupus Foundation of America www.lupus.org
Do You Suffer From Lupus?
What Helps You Cope With Symptoms?
Covered Up on a Recent Family Trip
A Day in the Life
6 AM - wake up- Take probiotic, Plaquenil, Vitamin C
6:15 - Eat high fiber (8+ grams) cereal to move slow colon that's been effected by lupus
6:30 - Use nettie pot to clean sinuses and prevent infection
6:45 - Apply tinted, SPF moisturizer to cover butterfly rash and protect from the sun. Also use mineral foundation make up for additionalr redness coverage.
7 AM - make coffee to fight off fatigue for day.
Throughout day - Drink plenty of water to keep kidneys clean, eat lo carb diet to help stomach pain.
4PM - Find time to meditate to eleviate stress and stay healthy
5PM - Take Miralax to help slow colon
6PM - During flare, take GI medication to help abdominal pain that goes along with eating.
8PM - Get ready for bed. Take kidney and blood pressure medication.
2 AM - Wake up in complete sweat, every night.
* Does not include working full time and taking children to practices and lessons, as well as routine family and home care.
** Could also include ice or tylenol for swollen joints.