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Pending testing to confirm type of lymphoma
Blood Cancers & Disorders | Last Active: Dec 16, 2022 | Replies (10)Comment receiving replies
Thank you. I appreciate the connection and the information.
I’m a note taker by nature, so yes that has been helpful.
I sound anxious, but I think I’m more confused than anything. I was told over 20 years that I had lupus and my kidneys were shutting down. There were so many tests and at almost a year later my diagnosis was systemic Lupus. There was a huge regimen of meds. Including chemo, heavy doses of prednisone, etc. at f see one point after 4-5 years, I had enough and took myself off all meds, against medical advice. Now, some 20+ years later, I’m told I might not have had Lupus. I just feel like this is a 2.0 process. I understand that’s normal for what’s currently happening, but every thing is at a slow pace. I’m grateful for the care I’m receiving.
I know blessed in many way and my family had been extremely supportive. I think I feel under prepared. That is out of my comfort zone.
So again, Thank for the connection. I will keep you updated.
Replies to "Thank you. I appreciate the connection and the information. I’m a note taker by nature, so..."
@sherda, I'd like to also invite @gingerw into this discussion. Her current medical conditions mirror yours to some extent. Like you, she lives with lupus, has just started dialysis and is in treatment for a blood cancer - multiple myeloma. Dare I say, you both also share a trait of being organized information seekers and note takers.
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It’s understandable that you’re feeling a little confused after learning about the conflicting information with your previous Lupus and kidney diagnosis. That’s a long time to be treated for something that may not have been the case.
I’m glad you’re feeling more confident about the care you’re receiving now with this new chapter about to start. It’s ok to feel underprepared because this is completely new for you. I was in the same situation almost 4 years ago when my AML journey began. It clipped me off at the knees because I was so healthy and seldom sick a day in my life. Then within a 3 week period I went from feeling on top of the world to being literally hours from crossing over that rainbow bridge! I’ve learned so much from my trek through blood cancer and a bone marrow transplant and I feel it’s important to help others along their journey.
Thought I’d share with you a little Spotlight article about a young woman I’ve been mentoring through her bone marrow transplant. We shared our story to show the value of mentoring in bringing hope to others facing a similar experience.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
When you find out your diagnosis, because of the nature of our forum, there will most likely be others here who are going through the same life adventure. I’ll get you connected with them. I want you to know you’re not alone and anything I can help you with, I’m right here with you through your reboot 2.0. 🙃
Let me know how your appt goes next week!