For 5 years I told my Dr that SOMETHING was wrong and she LITERALLY called me a hypochondriac. Even after 2 tumors were removed from my Maxillary Sinus in 2003 and that Dr saying I needed a chest CT to confirm his suspicions, my primary refused to order one.
A few months later, in Feb 2004, a trip to the urgent care resulted in an ambulance being called because we were told I was dying and the urgent care didn't know why! 3 weeks in the hospital and several scans, MRI's, ultra-sounds later .... we were told that they thought I had Non-Hodgeskins Lymphoma because of how enlarged my lymph nodes were and because of the blood results that were run.
They did a biopsy to confirm but it came back with something they were shocked to see. I had an advanced stage of SARCOIDOSIS. Normally it can be treated easily BUT because my primary did nothing for 5 years, the disease just ran rampant.
Now, 10 years later, I have been in the hospital too many times to count, I have had 6 surgeries to my face to remove tumors. (The last one was just April 22nd.) I have had to have my gall bladder removed, a COMPLETE hysterectomy because of a soft ball sized tumor, liver biopsies, spinal taps, etc, etc, etc.... The list of surgeries, biopsies, scans, tests, etc is endless.
The MRI of my brain shows lesions, the scans and ultra sound of my kidneys and liver also show lesions. My lungs are compromised and my heart shows the beginnings of CARDIAC SARCOID.
This disease is not very well known and we don't know how I got it, except that my Mom had Systemic Lupus and passed away in 2005, and this might be related. I am not following the text book symptoms and they have written an article about me in the ENT Medical Journal because I am an anomaly!
I am by nature a positive person. And I know that my positive attitude has gotten me through so far. But it's getting tough. We also take care of my precious grand daughter part time, and she brings me joy, even on days when I can barely get out of bed. Even the smallest gifts add up, so if you can spare anything, I'd really appreciate it!
DonationsSee top donations
- Lucy Lonning
- Amy Wernicki
- Karen Falk
- Elaine McDougal
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more