LupusChick’s Spotlight On series began about 3 years ago. We highlight men and women who are dealing with a wide range of illnesses, and we felt it was important to tell individual stories because of how different each story is. Our hope is you connect to one (or more) stories! This Spotlight On story was completed by LC writer, Maria Mongiardo and edited by LC Founder, Marisa.
Suyim is a forty-one year old married mother of two teenage daughters. She was diagnosed back in 2013 after a hysterectomy. Suyim suspected she had Lupus for over twenty years. After her hysterectomy she became worse and was not recovering the way she should have. After further testing, Suyim finally had a positive test result and answers to why she was feeling so sick for so long. Today, Suyim is on a more aggressive treatment for Lupus and is hoping for a cure.
How difficult was it to find a treatment that worked for you?
I probably have taken almost every drug out there used to treat Lupus. I am currently running out of options due to not having positive results with the many treatments we have tried. Most of the issues are stemming from my heart issues, which limits certain treatment options and positive results. I now have neurological involvement resulting in Myasthenia Gravis. I suffer from facial droop and eye droop off and on, with leg and arm weakness resulting in some days I cannot walk unassisted or without a cane. I also have other issues with my heart, Raynaud’s, Inflammatory Poly Atrophy, and Neuropathy. This summer was very tough for our family because I learned both of my daughters were also diagnosed with autoimmune diseases. My oldest was diagnosed with Graves Disease resulting in a thyroidectomy and an auto transplant of her Parathyroid glands. Then the doctors also found cancer in her thyroid. In between my infusion treatments I would stay in the hospital with her, and it was draining physically and mentally. My youngest daughter just had surgery that same month, and it was very hard for me to juggle my health and both of my daughter’s health issues at the same time.
Living with such a difficult disease, can you share any positives since your Lupus diagnosis?
One thing this illness has done for our family is brought us closer. We have overcome every struggle together as a family and we have not given up hope. It may be a long road ahead, but we are confident we can handle anything with faith in God.
Had you heard of Lupus before your diagnosis?
Yes, I have heard the word “Lupus” but I really had no idea what it was, or what an “auto immune” disease was. When I kept getting sick without answers, autoimmune disease or Lupus never crossed my mind. After my diagnosis I realized I had just about every symptom on the list. No one in my family has an autoimmune disease.
Would you say you have a strong support system?
My only support system is my husband and daughters. We live fairly far away from my husband’s family and mine. Sometimes when I am sick or need a ride after treatments or need to go to the hospital and cannot drive, it becomes very challenging. My husband also works out of town, sometimes out of state for a few weeks at a time so it is very hard. Especially since I live out in a rural area, and its about 35 minutes into town. The biggest support besides my family is the support groups on Facebook, such as Benlysta Buddies, and other great support groups where I can get great answers, share experiences, and ask quick questions.
What advice do you have for other Lupus Chicks?
Advice that I would give to other Lupus Chick is to take things one day at a time. If you are not feeling well or don’t have the energy, it is okay to say “No, I cannot, not today.” You are in charge of your own body and you have to listen to it. I had a very hard time at first accepting that I have Lupus, and there are going to be days that I just can not get out of bed, and that is ok. It is part of having this disease. You have to take care of yourself first, not to overdo things or push yourself to the point you end up making your illness worse.
What do you wish you could help change or make easier in the Lupus community?
What I wish I could help change or make easier in the Lupus community is spreading awareness. I wish we had more information out there for others to know about Lupus. Like myself, I have never heard of Lupus and I would not have gone all those years suffering if I knew what Lupus was. In the ER it seemed Dr.’s are not sure how to handle a Lupus patient, and that is so discouraging.
Another thing I have notice is the lack of support, especially during Lupus Awareness Month. No mention of Lupus Awareness month, on my local TV, News, etc. It seems we do not get the publicity I think we deserve especially if over 5 million people world-wide suffer from this devastating disease. I also always wish we could have a ride program set up for treatments to and from the infusion centers. I know there are programs that are set up for cancer patients going to chemotherapy treatments who do not have rides or transportation. I wish our Lupus community had a similar program when we receive treatments because I know for myself and others this would be a huge burden lifted. It would just be a nice program to have. If I was well enough, I would try to start one myself!
Has Benylsta been a huge help for you?
I was on Benlysta for about 2 years. Initially it worked well for me. I had some energy back and less inflammation in my joints, although I still had flare ups, it was not as bad. I had at least 2-3 good days a week, which was great for me. A few months ago, my Lupus seemed to get worse with more frequent flare-ups, and I started to have neurological issues. I also began to experience depression and increased anxiety. I then kept track of my symptoms and noticed it was worse after my IV treatments. I told my doctor right away and she decided to stop treatment. My depression went away and my anxiety is minimal but of course my flares are worse.
This November, I’m scheduled to start Ruituxan infusions, in place of the Benlysta. I am hoping this treatment will work and also hoping it will help my symptoms of MG. I had tried IVIG treatments in the past, which resulted in a very bad reaction that landed me eight days in the hospital. So I am a little nervous to try this new treatment, but I am not giving up hope.
What do you hope someone gains from reading your story?
What I hope someone understands from reading my story is to not give up hope, and knowing you are not alone. I thought it was rough when I was first diagnosed with Lupus, then of course when my daughters went through their medical issues that really became stressful and tested my limits. It is worse to watch your children suffer or possible going through what you are. I didn’t know how strong I could be until I had no choice, but to experienced all the difficulties my daughters and I were facing. I thought, “Wow; I think I am ready to handle what ever happens next.” It wont be easy but I developed this new kind of stronger faith, and hope! I look at things in life differently. I do not take anything for granted. What was once so big is now so small, meaning problems, issues, anything that was not of importance. It really put things in perspective for me, as in what is of importance in life and a happy, healthy life is one!
Anything else you would like to add?
I would like to add, but this pertains more to the non-lupies. Lupus is one of those invisible illnesses. I know there are times I am out and about, or I take pictures with my family and post them on Facebook, but Lupus is one of those illness where you may look “ok” or “great” on the outside, but our insides tell a different story. Or we may even have handicap tags but no physical appearance of not having what people expect a person with disabilities should look like.
I’m so tired of the stares, or the “judge-y” look I get or the shaking of the heads, when I get out of my car. I know for me I only show what the “good Suyim” looks like, but I never show the “bad Suyim”. The droopy eye, paralysis, the pain, the hospital stays. I try not to show that ugly side. Never judge a person especially a Lupus patient on the outside, most of the time we hide how much pain we are in or how sick we truly are, I know I do on a daily basis. Just like that old saying ” Do not judge a book by its cover,” well Lupus is one of those books.
What is your Lupus story? Let us know in the comments.