I’m new here!
Hi, my name is Ionna326. I'm here because of systemic problems relating to vasculitis and effects on the heart, mesentery and kidneys.
Hi, my name is LisaLeeLeeBlue. I've been diagnosed with Relapsing Polychronditis! I am sooo relieved after being “the sick kid” then pushing through pain and infections for 20 years while performing and teaching dance, gymnastics, cheerleading, and acrobatics. I can’t believe all the times I had to call out and never got a paid sick day and often did not have health insurance and danced and flipped my way into the hospital, I feel like a superwoman looking back at how I powered through so much. My friend said I make pain look good. alllll the docs and specialists said it was wear and tear, in my head, anxiety and asthma. Nope. At 37 years old I finally found out I’m not weak or a whimp. I’m actualyy stronger and tougher than allll deez btches!! When my right elbow collapsed and dislocated while doing a slow, simple, low impact acro skill, I knew I had something more than just fibromyalgia chronic fatigue chronic pain asthma allergies anxiety and depression. That I didn’t wanttt to go to the hospital a few times a month or create infections with my mind. i never did more than drink alcohol in high school, but my nose collapsed at 17 years old like hardcore coke user. (no offense at all for those who did or do, I was too scared since I always had reactions to everything) 2 reconstructive nose surgeries later, I still have had trouble breathing but ENT’s said it all looked fine. I had a daughter, then my body fell apart in every direction for the past year. Doctors were mad that I wanted referalls to specialists. I’m a mom now and my daughter needs me to give her a great life! I want to be the mom I’ve been dreaming of being since I was her age… but I can barely move, I have no energy, I can’t remember sht, I get fired from every job for being late or calling out sick because of pain and infections… I finally got a new doc that when I cried he took blood and took me seriously, and the ANA arthritis got me to a rheumatologist who was so excited to see abd hear my symptoms that he called another doc in the room to look at me. lollll. To know that I have this rare sometimes fatal disease is to know I am so much tougher than I ever thought. And now I can manage my symptoms properly, adjust my diet, and show my daughter how to be Superwoman!!
Hi, my name is lauriebrp. I'm here because I suffer with RP. the lack of knowledge and support causes this disease to cause damage to our bodies, and souls. I wa hoping to share my knowledge and experience and want to learn from all of you
I'm frustrated. I'm angry. I'm scared. I'm lonely. I'm tired.
Chronic illness feels like I'm in an inflatable raft in the middle of the ocean. It's cruel to think I might be rescued, but painful to think that I might never be.
I'm in a bad way today. I feel worthless and invisible outside of my house. I found out today I am being passed over for a different job so a young man I helped get hired could have the job. I have worked there 11 years, him 8 months. This move could have helped me stay working longer as it was not as physically demanding. The only time friends and family call is if they need someone to listen. I'm feeling isolated. I suffer from anxiety, so of course I am imagining worst case scenario. I have an appointment Thursday for pain management, but I don't have high hopes. I do not elicit feelings of compassion from people. I am who I am. My window for getting things done gets shorter and shorter. I am rambling now. This life is hard; it has always been hard, will always be hard.
The past 12 years have been a world-win of specialists, surgeries, and hospital admissions. Over this time I collected several diagnoses including Ehlers Danlos Syndrome, hypertension, hashimotos, and psoriatic arthritis. It all started with joint pain and fatigue that came on around the age of 32. I had red and swollen joints, particularly to my ankles and hands. Then I began having ligament tears including both ACL in my knees, ligaments and tendons in my ankles, and spine with minimal activity. These as well as other tissue injuries required surgeries in order for me to remain active and successful. In all, I had 15 surgical procedures in 12 years. Most of my health issues were deemed autoimmune and at age 38 I was being treated for psoriatic arthritis with biologic medications with good success in reducing swelling. However, I became sicker overtime leading to a 60lb weight loss due to poor appetite and reduced gastrointestinal motility. Despite all these complications, I continued to finish a PhD at age 40 and work full time while raising my two kids. I felt for me the more active I remained the more distracted I was from the daily symptoms. The days that I am less active are often the days I feel most symptomatic. Over the past 3 years I developed a new symptom of intermittent bright red, swollen and painful ears. It took the full 3 years to get a new diagnosis that made more sense to my clinical picture. In 2021 I discovered that I have relapsing polychondritis, an autoimmune condition that attacks the cartilage in my body leading to hearing loss, ear pain with redness and swelling along with continuous sternal and joint pain. Thanks to my medical team I am finally on a path to adequate treatment, but my future is unknown. RP is a very rare condition with little research or known treatments other than steroids. For now, I continue to be active by working full time, and being the best parent I can to two growing teens. I hope that sharing my story can help others recognize the signs of RP earlier than I did and therefore get treatment earlier. I still have hope for my future because I will not give up my career, active family life, or time with friends. For now remaining as active as possible and at times pushing through sometimes severe symptoms is keeping me in a functional state with a good quality of life. That does not mean that this additive is for every patient with autoimmune disease, but it is what works for me. I hope more research is done in understanding RP pathology and treatment, but until then I will live my best life.
I'm up and down at the same time, and if anybody understands it would be all of you. Tuesday woke up with a swollen lip, but only the left side because, well, I gotta be me! By the end of the day Wednesday it was apparent that it's because I have a raging poison ivy rash from hugging my dog (and no, it's not going to stop me from hugging my dog. I'll just be washing after every snuggle). Thursday my left ear started flaring - swelling, itching, weeping (the ear, not me) and waves of pain. But then yesterday, I got to apartment shop with my daughter because after five years of living away for college, she's moving closer!!!! Why can't my body be happy for my mind? Lol. Thanks for letting me ramble. Happy Sunday!