Living with Lupus

I have had several people ask me in the last year about my health. I have come to realize that I haven't been very open with this part of my life. I have just not thought it to be terribly interesting-- but it is a part of my life and so in an effort to share what I have done and what is helping me, I am choosing to share my story here. It is actually just a copy of an email I sent to someone last month when they were asking for information about my experience with Lupus. Since this is about the 5th email I have written on the subject in the last several months, I thought I would just put it here so that I have a place to refer people who want to know where I am. Feel free to skip this one if you find someone else's med stories boring! :)



It is frightening to hear the words "incurable, probably progressive" at any stage of life I am sure. I was diagnosed with Systemic Lupus Erythematosus (often abbreviated to SLE or lupus) 2 years ago (Feb/Mar2010). My symptoms began in earnest right after my Rebekah was born (almost 4 years ago)--although they really began during my pregnancy with Rebekah I just did not recognize it at the time. After her birth I was SURE it was the hormone shift, and then my birth control that was giving me all of the crazy symptoms. Shortly after my symptoms began we were crashing financially and the stress of that year deeply impacted my health in a negative way. I remember thinking I felt at least 10-15 years older than I was. I had severe joint pain, muscle weakness, hair loss and some crazy circulatory problems --among other things. I got stuck on the floor one day, unable to get up for a full 5 minutes. I couldn't believe how awful I felt. This spurred me to do something. I finally went to our family doctor when Rebekah was 18 months old which sharply brought me back to reality. After several months of waiting for an appointment I finally got into a Rheumatologist.

The first Rheumatologist I saw was a funny old man-- he was sure it was all in my head. I remember saying to him how I hoped he was right, I would love to be told nothing was wrong! I think the only reason he requested labs was because I did have six or seven active symptoms even though he deemed them to be "very mild". When I found myself sitting in his office 3 weeks later he was a very different man with a different expression on his face. He admitted to me he had no idea how I was functioning at the level I was. He said to me, "You are a very sick woman, and you will be sick for the rest of you life." We moved right into management. After several tests, my kidneys were declared clear of lupus (huge relief) and my next most troubling symptom was muscle inflammation --called Myositis. Week after week my CPK enzyme continued to climb even with the introduction of medications that we hoped would put it in check (Plaqunil, Methotrexate). After MRI's, visits with neurologists, and a lot of prayer I determined with my new Rhematologist that steroids would be appropriate. Her goal for me was to be on them less than a year in total. We were successful in immediately bringing the muscle enzyme back into normal range with that tool-- it was a l-o-n-g 11 months of coming off painfully slow and having my blood drawn every 3-4 weeks to make sure I was not being triggered into a flare. The very slow schedule of reducing the prednisone was effective though-- I did not ever have to increase my dose and I have been off of the steroids since last May. I know this was a blessing of prayer/priesthood, and careful monitoring by my physician. I continue to take 400 mg Hydroxycholorquine (Plaquenil) daily and 6 2.5 mg tablets of Methotrexate/ week. I prefer this in an inject-able form when I can get it that way as it makes me much less nauseated. My body is tolerating them fine. My kidney and liver counts are perfect, which is great (Methotrexate can take out your liver in a matter of months if the body doesn't respond to it well so it also must be carefully monitored) So far so good and I am going to be talking to my doctor about reducing my doses when I see her again in a few months. My biggest complaint right now is (always) fatigue and Reynauds Disease. These are just irritating to me, I have not found a way to alleviate them altogether, and so for now I just have to take it one day at a time. The lupus is still active and I still have autoimmune antibodies showing up in my tests. I am not clear, though I hope to be one day. --I hate to sound ungrateful for the medications, because they have blessed me immensely; but in some ways they are a mixed blessing. Side effects are troubling and continual. There is always that question of whether I am trading one thing for another. Also I have enough of my Mom in my head that I feel like my body should be able to function without synthetic supplements and medications-- it is a very personal decision and not one to take lightly in my opinion. At least for now I continue to take these meds and feel blessed to have them.

I have also used many alternative therapies to help me. My Mom and Dad got me hooked and I love doTerra's essential oils-- since I take immune suppressing drugs every day I am always on the verge of "catching" something. These really help me feel less stressed about this. I rarely get flat out sick but I am constantly monitoring how I feel and I am continually using them to help me fight. I have not had need of an antibiotic since I went on immune suppressing drugs-- even though I have been sick from time to time I have really been happy that I haven't been "sick enough" to have an antibiotic. So that is a critical piece of my puzzle and a big reason I feel fine about going to primary every week and shaking hands with a gazillion people and wiping icky noses and being coughed on. Stomach bugs hit me harder than I ever remember having them (I always seem to get it worse than my kids, and lose at least 10 pounds in 3-4 days), but fortunately I haven't had to deal with too many of those episodes.

Regular exercise has been another huge component in helping me to feel and function well. It helps my energy level be more predictable and also really helps to reduce painful swelling. For me Yoga or gentle pilates type exercise seem really supportive---my favorite and most effective is TTAPP (very boring grandma workouts). I love how they make me feel and so even though they are a bit of a drag I do them anyway :)

I was also blessed to be put in the path of a woman who is a very gifted energy therapist. She uses primarily something called The Body Code. It basically uses kinesiology to find emotions that have "trapped" in the body or energetic field that are creating disharmony and disease. Heidi really has helped me to release a lot of emotional baggage that has contributed to the disease-- Read The Emotion Code by Brad Nelson if that is interesting to you.

Finally I have been looking at how my food affects the disease for me. I was not ready to look at this until very recently. I have long suspected that if I changed my diet enough I could probably not have to take the pills every day. I am not even close to being in that place, but I am feeling really ready to kick lupus to the curb so I have started by juicing fresh fruits and vegetables each day. I just keep coming across stories of people who have been able to eliminate autoimmune diseases-- lupus and others such as lupus --by drastically changing their diets and improving their nutrition. I know there are foods that for me trigger my symptoms and cause me to feel really bad. So I am learning to avoid those altogether. It doesn't feel as much like a serious sacrifice when I have energy to "run and not be weary".

The reality of this disease is that it diversely affects each person who has it. One specialist told me you could have 100 people in a room who had lupus, and they all would have various levels of function, symptoms and triggers. No two would react the same. So while many people have this diagnosis, it is an individual battle. It has been important for me to just compare myself to myself--my progress to my progress, instead of trying to strictly follow someone else's path to better management of the disease. I appreciate the stories of others and their ideas and insights in how to manage their challenges, but I have had to learn to be cautious to find my own path to wellness through the Atonement of Christ. I credit all of my healing and progress to Him. He has blessed me with tools and resources that have supported me and helped me so much, and I know that they work because of His grace.

I have a dear friend named Jen who I met when we moved to CO. I knew Jen, had been in her home more than once, and visited with her several times before I learned that Jen had cancer. I knew she had some health issues, they were not secret and she wasn't "hiding" it, but Jen has inspired me-- because it wasn't a secret, her needs were known, but I met Jen before I met her cancer. And I have aspired to be like her in this way. I have specific needs. My condition is not a secret. But when people think of me, I hope they don't think of me as a sick person first and foremost. If I have made it sound like this disease barely bothers me, I have misled you and others. It is in my face every. single. day. It is a challenge not just for me but for my husband and my children. We are learning and growing together. We have had to learn how to manage my constantly shifting energy levels and debilitating pain--and for us that looks like Burke picking up a lot of slack at home when I am down, kids getting more movies than I like, sending kids to play with friends more often than I can return the favor. I have had to learn how to ditch the guilt of dirty dishes, sticky floors, dirty bathrooms, and unfolded laundry. Some days I can only wash clothes and put food on the table (cold cereal for sure counts as dinner sometimes!!). Some days the kids watch movies all afternoon so I can rest. I have pity parties sometimes--a lot sometimes!! But I have found that doing what I CAN do even if it is very little helps me feel at peace within myself. I feel blessed to function as well as I do. I feel the prayers of those who love me and I am so very thankful for that.