*Annamaria's Angels helping with bills
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!
As of right now, my equilibrium is way off and I find myself falling every now and then but luckily no major damage. I'm doing well with Physical Therapy and we are keeping an eye on the mass under my left arm.
My Primary feels like she can no longer properly care for me as the disease progresses BUT I am so comfortable with her, with her honesty and her willingness to learn all she can about Sarcoid that I hate to switch to someone who may or may not have more "book smarts" with this disease. I don't follow any "normal" symptoms anyway and have been told I'm an anomaly so why travel more than an hour away, to a facility I'm not familiar with and see a Dr that doesn't know me well? We'll see how things go.
For now, I'm proud to say that I have managed to stay out of the hospital now for about 2 months so for that alone I am Thankful!! Your Prayers truly help and I want to again say THANK YOU for spreading my story around, for your kind words, well wishes and your generous donations. The constant co-pays for the hospital, Dr visits, medications, etc add up. I can't imagine how this would be without your kindness. THANK YOU!
Love to you all ~ AJ
Thank you for always keeping me in your Prayers, I could really use them tomorrow. Thank you for sharing my story and for getting the word out about being your own health advocate.
Much Love to you all ~ AJ
I want to say THANK YOU again because for the first time, I was able to pay my portion of all of the medical procedures at the time of service instead of asking to be billed and worrying about how I was going to pay it later. Just to let you know, there is a separate bank account just for your donations and they are only used to pay down the past and help pay for the current medical bills. Your generosity has been overwhelming and again THANK YOU for everything and for sharing my story with your friends. Hopefully soon they will be able to do more research on this disease so others don't have to go through this