First Post

Thanks for visiting my website. This is a website meant to learn more about our disease, how to manage it, what are some of the factors that trigger flares and a place to share ideas where others may benefit. If there is anything specific or ideas that you want to know more about, please feel free to e-mail me on my contact page. I look forward to spending time with you. Look for my posts weekly on Monday mornings. My first post will be this Monday so be on the lookout! See you then and take care of yourself! XO!!

2 Replies to “First Post”

  1. Thank you for starting an autoimmune disease support group! I am plagued by a few of those mean, and totally life changing diseases, but I am also the caregiver, supporter, and rock, for my daughter. We call ourselves the autoimmunies. Brittany was diagnosed with Lupus at 17. She has had a very trying five years, and has yet to embrace remission. The first three years were very difficult. It seemed like every time we went to the doctor, she left with a new diagnosis. Since the initial diagnosis of lupus, she has been diagnosed with Raynauds, CVID, MTHFR, angioedema, and idiopathic tachycardia, most likely related to the Lupus. Also, during this time, we had so many trips to the ER for chest pain. Finally, some cardiac testing, and a thorough workup was done. And, BOOM! Another finding. PFO, with a pulmonary AVM. This, along with the chronic tachycardia, we’re talking about resting heart rate of 150 plus. This is when she was also diagnosed with pericarditis/myocarditis. She gained two new meds, metoprolol, and colcrys. The metoprolol has helped with her heart rate, and the colcrys has been awesome for the pericarditis/myocarditis. The drawback, chronic yeast infections, so yes, another pill to swallow, literally. Her lungs have been affected by the Lupus, but the doctors are managing them pretty good. She had autoimmune hepatitis, and was very sick, three years ago. She has been on benlysta going on four years, and IgG, going on 3 years. She had a port placed for these, since they are every four weeks, and cannot be given together. All of this to say, I really don’t have time to embrace my autoimmune issues. I live in pain daily, but I must stay strong for my girl. I do work occasionally, and that is my reprieve. I had to stop working full time, five years ago, due to Brittany being so sick.
    Brittany and I have both found, limiting sugar intake really helps keep inflammation down. We try to eat as clean as possible. I apologize for the long post. Not a pity post, just hoping some information I shared, will help someone else.
    Soft hugs,
    Autoimmunie #1

    1. Autoimmunie #1- I’m so sorry to hear about your daughters struggles with her diseases. I know as a mother that has to be so incredibly difficult to see your child struggle with this, especially while dealing with your own struggles. I commend your strength for your daughter but you must also take care of yourself. I totally understand the struggle as I am also a mother of 3 very active boys! I hope you are able to get some relief and I send out thoughts and prayers for you and your daughter! Thanks so much for sharing your story and I hope it helps someone else that may be going through something similar. It always feels good to know your not alone whenever we have struggles in life!

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