living with an invisible disability and having compassion (part 6) - pituitary brain tumor journey
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- เผยแพร่เมื่อ 4 ก.พ. 2025
- Shortly after my pituitary macroadenoma diagnoses I had a realization when I was at the grocery store that we never know what anybody else around us is truly going through. This experience helped me to better understand that we should be kind to everybody we come across in our day to day lives.
GoFundMe: gofund.me/02b6...
This video is part six of a multi-part series that I have been sharing about my experience, thank you for following along.
If you have any questions about my story or have experienced a pituitary adenoma yourself, please don't hesitate to leave a comment below.
Thank you Jesse. I can empathize with all of us who are challenged with an invisible illness. It brings with it a different challenge and as you described a different experience than those with visible challenges. I pray many hear you, the world needs positive feedback. Be kind to others. They may have just heard the worst news or the best news. Everyone is worthy of kindness.
I love your attitude. Stay positive. I could write a lot on this topic, but you said it best. Just be kind.
my macroadenoma was discovered about 9-10 months ago. I feel and relate in so many ways. I have been struggling with energy and brain fog for a good 7 years though and didn’t understand. For myself though the doctors are still hesitant to remove it due to the potential damage to the pituitary gland. I don’t know what to do but wait it out. Many doctors do not accept that the tumor is causing the side effects that we feel so then we feel discredited. I’ll be following you with the hope you are on the path to recovery soon!
I went undiagnosed for at least 15yrs, acromegaly without giantism,I was near death when finally found,many Drs telling me it was all in my head,I had 5 children I had to get better but it was really hard, laughter helped but I cried a lot away from them, everything you feel is yours to feel,it's been 20yrs after surgery & there's still alot of hard days, but I have seen 8grandchildren,3 great grands,glad I found your channel,I wouldn't have been able to put into words the way you are, keep going sir & heads up, you have a right to all your feelings & you are helping here
Hi Jesse, How are you doing? I also have a pituitary tumor that was operated on 2005. Every testimony I listen to is exactly like mine in many ways but our symptoms are a little different. First and foremost, it took us a long time ( mine took years) to finally get a Dr to do the right tests to find out what was wrong. Your eye Dr was spot on. When I finally convinced my Primary Physician that something was wrong with my eyes he asked me if I wanted to see an eye Dr. I went to an eye specialist and they took pictures of the back of my eyes and didn’t see a thing. They diagnosed me with glaucoma and sent me home with eye drops. That was just one of the tests and medications I had to take during my quest for the right diagnosis. Finally, I was experiencing breast tenderness so I did a breast self examination and called my Dr immediately when the exam didn’t go well.I was producing breast milk. I was 52 years old!!!! They were unable to get all of the tumor and I still have hormone problems and still have the tenderness.
I feel the same way as you do in that I have my priorities in a little better place since I got the tumor. Thank you for sharing your story. Susan
Finally someone mentions the throat thing and trouble swallowing.. it really scared me I thought I was having an allergic reaction to something. That my throat was swelling closed. Sometimes it feels like someone is pressing on my throat when I'm not even eating or drinking. Doctors don't think any of this has to do with the tumor. Also they don't care they don't listen. Not about any of it they don't even think it can cause headaches.
Go to your primary doctor and request a thyroid ultrasound.
Yes there need to be more compassion in our society these days
Thank you for sharing❤
My experience with the Canadian health care system is mostly positive. All three of my pit surgeries were within 2-3 months of my MRI showing it was large enough to warrent surgery. I do live 2 hours away from a major city maybe that is why I could get in for surgery in a timely manner. Invisible medical issues are out there more often than we think and we can never know that people are suffering just by looking at them. In this video you mention quite a bit that you have a brain tumour, but I think you should consider calling it a pituitary tumour. If I had a choice between a pit or a brain tumour, I would choose a pit. The surgery is a lot less risky than a cradiomy, and the risk of it being cancerous is almost nil. The chances of brain damage in a pit surgery is zero. You are right, they put a tiny camera and tools through your nose, totally avoiding your brain. You will wake up with a slight sinus headache, and I hope like me, have an almost instant recovery of eyesight. Your insight on the suffering of others is good to hear, we all need to hear that.
Jesse I can relate exactly with you. I became disabled after my 5th hospitalization for 10 years of chronic hyponatremia due to Syndrome of Inappropriate Secretion of Antidiuretic Hormone (low sodium) also a prolactinoma puturitary brain tumor on the interior of puturitary gland. Surgery not a option. 99% I would lose my vision. This happened April 4, 2023. Its Oct 2024 My rapid vision changes and cognitive episodes have increased dramatically. I worked in Corporate Sales and Marketing 25 years. Representing Hershey Foods, Coca Cola and Hormel Foods.i went back to school to pursue my passion and became Licensed Esthetician. (Skincare) I will be 54 Nov 2. My Accomplished careers mean nothing anymore. I had to go on Social Security Disability. This has all been a grieving process. Thank you for sharing
I have compromised kidneys, no one can see that , invisible illness is a fun club. 🙂🦄
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Waiting so long for the surgery does really impact your life! Cannot imagine that here in Germany! Didn't know the Canadian Health System is so bad😢
No reply, necessary. I appreciate hearing your thoughts. While you have a health situation which is most definitely causing you disability and you rightfully deserve the financial assistance, I so hope that it is only temporary. Attitude wins in life and yours is so positive. Not sure what the negative keyboard warriors have going for them because it is not empathy, compassion, or positivity.💙
Hi Jesse 😊
I just realized you probably can’t see the comments but even if people have it worse than you, your situation is awful. You get to feel sad and frustrated and angry. ❤