If there is one good thing out of getting lupus, it is that it has taught me to live authentically. If my body is going to fight itself daily, I’m at least going to give it a reason to fight. By living the way I want and not worrying about others scrutiny or expectations.
Some major things happen for me in 2016, such as my oldest son graduating high school, and getting a scholarship to go to college. My middle son entering junior high, and my youngest son finally getting the surgery and braces that he needed, and I finished one of my master’s degrees.
I really cherish those moments. However, I feel like 2016 was overshadowed by being diagnosed with lupus. In one sense I’m happy that the doctors finally figured out and put a name to what was going on with me. But in another sense, it seems like as soon as they put a name to it, it’s been a roller coaster with ups and downs. I guess it’s just finding the right concoction of medications to treat all the symptoms. I’m pretty much on prednisone every other week, and that causes other issues.
We have had some “successes” my butterfly rash on my face finally cleared up. I am pretty excited about that. Standing in front of a room full of students having a rash on the face can make someone feel extremely self-conscious. I still have the mark on my lip who knows if that will ever go away, but it’s livable. My hair seems to come and go some spots heal, and then other places start to fall out. The latest thing is my hands and feet. It started with my hands they just began to swell, with little red markings. My hands and feet hurt by the end of the day. The doctor kept giving me prednisone to reduce the swelling, but like I said, it was causing other issues, so I didn’t want to take it anymore. I also tried a topical steroid ointment, and that didn’t seem to do anything.
Overall, some days are better than others. Another thing that has thrown me off is insomnia. It’s weird because I’m tired but then I can’t sleep. All of this is still so new to me. Still trying to learn more about the disease and it honestly gets overwhelming at times. Many articles and people on YouTube contradict each other. Nonetheless, I have started to pay more attention to what I eat and how it makes me feel. I’ve noticed when I eat low-carb’s and cut out the dairy I feel better. I’m still waiting to feel great or at least like myself again. I hope to start working out shortly. I feel too weak right now, not sure if interval workouts and weights, will ever make it back into my routine again. However, I would like to get back to Pilates. It’s also been hard staying out of the sun. I love being in the sun, and being outside in general. Nonetheless, the doctor has advised me to be ultra cautious because of the high altitude that I live in. I feel like since I have been diagnosed with lupus I haven’t been able to do what I love, and a lot of the things I love are my natural stress relievers. I know I’ll figure something out I have to for my sanity.
I don’t talk about my disease or struggle a lot on social media or with people that aren’t really close to me. I don’t want to seem like I’m complaining. I am grateful for the life that I have. Like most peoples, my social media displays only one side of my persona, the happier, fun, loving persona. However, I am dealing with this disease, and it has had a tremendous effect on my life; and I am determined to overcome, and not dwell on it.
This post is mainly for others who may come across it that are dealing with lupus themselves. Before I was diagnosed with lupus and alopecia, I have a never even heard of it. I want to show some of my progress from when a lot of my hair fell out in September, to where I’m at now in December. I wish I could say that I’m starting 2017 with many highs on the lupus topic, some ways I am, but I’m meeting with my doctor today to start a new medication because I am no longer responding to the other medications that I’m on.
I would like to find holistic approaches for lupus and alopecia. If you do you happen to have lupus or alopecia, and you found some natural remedies that are working for you, I would love to hear them. I’m tired of getting medication after medication.
I planned to do an updated post in about three months, I should have finally got into the rheumatologist by then and will be able to give updates about that. I’m really determined to come back with positive reports of no hair loss, no butterfly rashes, and no flares. Wish me luck!
Thanks for reading,
Below are video’s of my last hair treatment the first week of December. All three videos are from one session. I get this done every four weeks. My head is not numbed before the shots, yes, they do sting, some hurt, and I typically get a minor headache after.
This slide show is my hair showing my hair progress from September 2016 – December 2016. Still a work in progress but getting there. I still have to remind myself that I am not my hair, that am I still beautiful, and that my primary focus has to be maintaining healthy hair, skin, body, and mind. I am sharing this because I am no longer scared, or ashamed. It’s a disease I am living with.