Today will be a break away from the light and colorful posts about food and travel, or humorous anecdotes about my four darling children. On occasion I get an email from a friend asking about Lupus. Either they have had some unusual test results, or a family member or friend has been newly diagnosed. Such is the case today. Perhaps some of my lessons learned will touch others.

Please remember that I am neither a doctor nor a medical expert.

Dear M,

I am so very sorry that I even have to share these thoughts with you. I imagine that you are in the midst of many emotions. I empathize. It will get better and worse. With time and information and good medical care you will feel more in control than you do right now.

 I was diagnosed with Systemic Lupus almost 4 years ago. The discovery came after at least 6 months of Dr. appointments and numerous assurances that I was not “sick,” but just “doing too much.” My aching joints were blamed on my running workouts; my exhaustion on being the mother to 4 kids and married to a husband who had a demanding military career. My prescription was always “take a few days off and get some rest.”  When those suggestions did not work, I was back to the doctor begging for further tests. Persistence, blood work, and specialists were able to finally, give me a clear-cut, specific diagnosis of SLE Lupus. I realize that many people have symptoms, but never have the correlating tests results. Some are treated for the wrong disease for years. I will actually say that my first emotion was not anger or fear (although those did come) it was relief. RELIEF that I was not crazy or imagining symptoms. Once I knew what I was facing, it was time to learn. While I now possess an abundance of medical information, I also picked up a few good life lessons. What I share today comes with 4 years of perspective, I am quite sure that 10 years from now the lessons will be different.

CLARITY WITH SYMPTOMS - My first round of Dr. appointments involved words like tired, achy, lacking energy. I realized that only spending a few minutes with a Doctor complaining of broad and somewhat vague symptoms was not helpful. We finally got somewhere with VERY specific ailments.

• I am exhausted. After a full night’s sleep, I get up, take my children to school, and then set an alarm to make sure that I wake up in time to pick them up at the end of the day.  Some days when I take the kids to after school activities, I have to go out to the car to sleep until they are over. This clearly spelled out the level of exhaustion and the amount that I was sleeping.
• Six months ago I regularly did 10-20 mile runs with friends, chatting and laughing the entire way. Recently, I can’t talk for the first mile and can’t keep up with them, even for just a 3-5 mile run. I was able to show specific changes in my body.

I have continued to give very specific examples and feelings. If I only have a few minutes with a Dr. every few months I want our appointments to be productive. When we discovered that I also had Celiac Disease, it is because I was able to bring a written summary of symptoms and a pattern of digestive history from an entire 2 years. In some cases I am the one sharing articles and information with the Doctors rather than the other way around.

DIAGNOSIS – Many autoimmune diseases have overlapping symptoms. Many people have multiple autoimmune diseases. Be persistent with your Rheumatologist that you have the full picture of exactly what you are facing. This will help you to make the best lifestyle changes and medication choices.

RESEARCH. READ. STOP. – Find the most medical information that you can. understand the terms, the tests, and what various results mean. Read about symptoms, signs to watch for, medications and their side effect. Then STOP. Avoid all the worst case scenarios, the horrible stories and the end stage images. The internet and the bookstore is a wealth of information, as well as a Pandora’s box of fear. The best thing my Rheumatologist did was give me my diagnosis, a handful of information and an appointment 2 weeks later. He gave me time to take in the reality, do some research and return with a clearer head and a list of questions.

DOCTORS – Find a Dr. that you like and trust. Then continue to question them. Ask about specific medications and treatments. You spend more time with your body than anyone else. Doctors are not perfect, they are very busy and there are constantly changing thoughts, research and treatments. Be your own researcher and advocate. I have actually had a specialist call me on the phone to apologize for not believing me. I looked to “active and healthy,” he said,  yet my blood work proved that I was sicker than I appeared.

TESTS – Lupus can impact your body in many ways. Request as many tests as your insurance will allow. Having what will hopefully be a healthy baseline of heart, lung and kidney function will be helpful for comparison later on. You will also feel better knowing exactly how the disease has impacted your body thus far.

INDIVIDUAL – This disease is completely different for each person. This is part of why it is so hard to diagnose and treat. The symptoms, the treatments and the outcomes will vary with each individual. I knew of another young woman who was diagnosed in August of 2008, just like I was. As I was turning a corner and starting to feel better 3-4 months later, she was on dialysis for Kidney failure. The disease is not degenerative. There are no timelines. You can go for month or even years feeling great, and then something causes your immune system to kick in and it doesn’t know where to stop. Get to know your body and your health, and then know that it will change – for the good and the bad.

MEDICATIONS – They take time. I was diagnosed in August. I would say that actually started to feel “better” in December. Many of the drug regimens take some time to actually make enough of a difference to feel the results. But wow, once I felt better, I realized just how badly I had been feeling. Due to side effects and changes in your health you will vary your medications pretty regularly. In the last 4 years I have been on over 10 different medications. I keep a note in my wallet with my current medications and dosages in case of emergencies. Keep track of the side effects. Some of the pain killers and muscle relaxers will impact your ability to drive and mental health. If you do not like how a medicine makes you feel speak to your Dr. right away for an alternative.

EMOTIONS – This aspect of the Disease has been very difficult for me. I want something to hate or to fight or to remove. Unfortunately, the “bad guy” is me. My own immune system is what is attacking me.  Dealing with the disease is less about battle and strength, and more about learning to coexist. I often think of trees – I would like to be an Oak that endures and outlasts the harsh weather and droughts through a long life, instead I need to be more like a flexible Weeping Willow that gives in to the winds and bends with the opposition. I do not like it. It makes me feel weak. I am working on this.

VANITY – As if having a disease that steals your energy, movement and over-all health isn’t enough, Lupus and the corresponding medication can change how you look. I never considered myself to be overly vain. I have never had any sort of cosmetic procedure. I often go out in public without makeup; hair pulled into a pony tail. Yet when my face is red and raw from the common rashes, or I am swollen and carrying 20+ lbs of weight thanks to the toxic medications in my system I find that I am more concerned with my looks than I ever realized. While I am not at peace with this aspect, I have some coping tips. Wear clothes that make you feel good and comfortable. I actually have clothes in 4 different sizes (yes, I see that much fluctuation.) Find creams that calm your skin. While I usually skip makeup on a bad skin day, if you need to wear foundations and powders find ones that are the least irritating as possible.

REGULAR VISITS & TESTING – Sometimes, even when you feel great, the disease is at work in your body. Just because you are not tired or achy, doesn’t mean that you can let your doctor visits or medications fall by the wayside. At a recent appointment, for something unrelated to Lupus, the doctor picked up on  a symptom that I did not “feel.” I would have attended my upcoming, regular Rheumatologist visit and told her that I had been feeling great. It would have been the truth. In return she would have ordered a few routine blood tests, but probably wouldn’t have listened to my heart or lungs. Lupus can impact your heart and lungs and kidneys and you may not “feel” it until damage has been done.

REST – I wish sleep came in a pill, because I have found that nothing, NOTHING helps me more than sleep. Sometimes it takes a solid 12 hours to feel better. Talk about an infringement on time. While getting a regular 8 hours helps to keep life on a more even keel, I can see that stress, travel, and extremely busy weeks often require a day or more of recuperation. In the last year, I have probably had to take about 20 of these down days. The thing is, they are often unpredictable. Regular rest and consistent medications are the only preventative things I have been able to do. What I can’t do is push through exhaustion, physically taxing days, late nights, high levels of stress are very hard on my system.

FOOD  – there are great debates as to whether or not certain foods or diets can improve your overall prognosis, or if some can actually trigger inflammation. While I have not found a Doctor who will fully get on board with the impact of diet, I am a believer. I DO NOT think any certain foods or diets will cure Lupus. I do think that what every person ingests impacts their health. Due to Celiac Disease I do not eat gluten of any kind. This elimination made many improvements in my overall health. I avoid night shade vegetables; especially tomatoes and potatoes. I do my best to avoid white foods and added sugar. I don’t drink soda. I try to fill my diet with fruits and vegetables, lean meats, organic dairy, nuts and seeds. It is not always easy to do all of these things, but when I follow it I feel better and I sleep better. I am currently experimenting with regular doses of Coconut Oil in my diet as many believe that it can help autoimmune disease as well as joint pain. Without a degree in nutrition or medicine, I can only say that it makes good sense that eliminating processed foods and chemicals would improve one’s general health.

PLANNING AHEAD – I really have a hard time with this. I don’t know what the future holds. (Not that any of us really do.) I don’t like not being able to set long-term athletic goals. I can’t book a dream vacation 18 months out. If I plan a lunch date two weeks from now, I might not be able to follow through. I hold accountability in high esteem, yet I may be the one who has to back out of a race, a trip or even a get-together. I find this especially hard when it comes to work or academic commitments. This is when having a co-chair is helpful for events – you can do much of the work ahead of time, but sometimes I need a sidekick to get it all done. As I worked my way through grad school, I rarely waited until the last-minute for anything, as I never knew what the last-minute would hold. Being extremely proactive and organized helps me to fulfill important commitments and deadlines. The BEST lesson of not living for the future, is making the most out of the present. I take full advantage of the days when I feel well.  I know that in the past I was always working toward something – now I treasure each day.

PRIORITIZE – The one thing that the early Doctors got right was that I needed to rest. 4 kids, a husband that traveled, running marathons, chairing a variety of organizations, and being a full-time graduate student were too many things to take on in conjunction with this new disease. I took a few steps back and rearranged my priorities. My family came first. I would no longer do the dozens of things that made me too tired to be fully present for my kids. I learned to say no. I made commitments to just a few things that mattered the most to me. I promise that I did not spend the last 4 four years in bed or giving up. I was still capable of accomplishing much post diagnosis – 14 marathons, dozens of half marathons, a Master’s Degree, ran two non-profit organizations, lots of community service – but I took each thing one at a time; with my health and my family always coming first. The gift this disease will give you is the deeper realization of who and what are most important to you.

DO SOMETHING – This disease makes me feel helpless. As I said before, there is no fighting back. It is hard to sit around and wait for a better medication or more research. I like that I am in some way helping others as they face the disease or encourage donors to work toward a cure. Each of us has a talent. I used mine to speak publicly at benefits on behalf of the Arthritis Foundation and The Lupus Foundation. I share my words with financial donors, patients and doctors. This is my way of moving forward and making some type of impact. Autoimmune disease can be passed on through our genes; I have 4 children; I have to do something in hopes of better diagnosis and treatments in the future.

 For me, this disease is not a sprint to the cure, as there is no cure. It is a life-long marathon, with many long grueling miles to go. I have to set a pace that works. I have to re-evaluate goals regularly. I have to figure out the best balance of rest and nutrition. I have to keep looking forward even when it hurts. And I MUST celebrate each opportunity, lesson and accomplishment.

I wish you the best.

Jackie