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Sat, Apr 1 9:49pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Just Want to Talk

It is good you are talking to someone about it. I have not been through that much talking to others to much the entire situation makes everyone avoid they are not trained to help you. Best to talk to counselor or therapist to help you work through it as long as
they share the Christian faith. You need someone to allow you to cry, I did have my surgery and you have been
through a great deal of fighting for your life traumatic situations. You need to talk and its o.k. to get it out and
know that this is a normal reaction to what you have experienced.
Elizabeth

Sat, Apr 1 8:39am · Managing Life-Long Mental Health as a Senior in Mental Health

Thank you Jim for the “sermon” I was and still am at peace with losing mom. I know where she is and I was with her when she passed.
It was a relief as I know she was very lonely and wanted her family near. She wanted to leave and there was no reason to stay on earth Long story. (My sister went with me to Baltimore this week for the doc visit via 10 hour AMTRAK she talked about mom a lot
which accounts for my thoughts of mom. I am o.k. with her absence…..there are just those times.

I took the news of my cancer diagnosis really well last February, everyone was rather taken back at my peace., this is the fist time I heard in my spirit before the diagnosis call that it was cancer, which prepared me for the news,
I have suffered bravely with this and told mom that God would give me the grace to walk through this if He didn’t heal me as mom prayed some times all night for my healing, I had been to doctors for three years and it could have been taken care of by specialists that just didn’t take the time, received poor medical care.
My family, knowledgeable in the system believe that I received such fragmented poor medical care by the same medical system that ended up doing the surgery from Hell, for lack of having another option. The issue is with the hospital (not the surgeon) know to be the worse after care in the country by U S News and World Report & World Report. (I agrees with their findings)
I praise God for the doctor specialist I saw this week, should have seen a long time ago, but lets not go there.
I agree 100% with your “sermon” . All of this peace was present before my last surgery (one year ago April 6)
The surgery was bad enough but the sewing a lump of burlap to my tongue for the flap to my severly swollen tongue
(blocking my air way.) appears to be rather primitive, 3rd world country medicine. NOW TALKING ABOUT DOING THIS AGAIN ! ! !
When I was told I would be sipping ice myself, as the doctor was stern “Doing this yourself”
and then the hospital had no “ice chips” something that simple which created many complications
in the night and steroid and possible airway tube, etc. all for lack of ice chips.
Is this the medical care across the country now as this country is in moral …decay””.
I can’t seem to get back on track which is a poor way to express it.
Touch, I live alone. Spiritual what has happened to me, where is my faith. Music worn that out.
The surgery was trauma and then
coming home on Morphine bottles and trying to think clearly on three pain killers plus the morphine.
and to tell me that I would need another surgery.
This is a bunch of Blah blah blah that I am writing so please forgive me. I am overwhelmed at times but dont
fall apart. The crying that came some length of time month or so after surgery was I learned from the meds.
I don’t have the crying now. I just stated that death would be better than to go through that surgery again.
Enough said.

Fri, Mar 31 8:10pm · Managing Life-Long Mental Health as a Senior in Mental Health

Thank you Jim, to me another primitive surgery, having a burlap bag sewn to my tongue is really barbaric (to hold the transplanted
flap to the tongue. It will be one year ago April 6 since the nightmare surgery which was a wave of Hell.
I am especially thankful that you are praying for the Peace that only God can give for my mind.
I am praying for His mercy. The chronic pain is a reminder the condition is there. The surgery was April 6 and mom
passed away on April 23. I think God took mom so she would not have to grieve anymore as she did over
my condition and she was alone so alone in a facility and I miss her so.

Fri, Mar 31 4:38pm · Managing Life-Long Mental Health as a Senior in Mental Health

Hi Justin, I did see Dr. James Sciubba via Amtrak to Baltimore. Dr. Sciubba studied my records and oral examination
called the surgeon, pathology, and another surgeon while I was in the office. I would have ask for a biopsy but didn’t
I found out that I do not have lichen planus and that properties of lichen planus can change. Dr. Sciubba will speak
with my surgeons etc. Dr. doesn’t do the surgery, I was disappointed with this,. I believe I should have seen
him over two years ago and I would not me in this medical situation because of poor medical care. Google Dr. James Sciubba

Thu, Mar 30 9:32pm · tongue problems in Eye, Ear, Nose & Throat

HEY Everyone with lichen planus and any oral issue, I FOUND THE NO. 1 Doc in the country. Saw him yesterday
he KNOWS HIS STUFF. Dr. James Sciubba of Timonium MD. 15 minute ride out of Baltimore. Went by train
stayed at nice hotel with shuttle service.
Dr. James Sciubba will get you the help you need put it together, he is International Known.
I was sick of the whole mess and dying slowly at least I felt so. FINALLY a doc. who gets to the root of the
problem. FINALLY ! ! ! ! ! ! ! Google him yourself UNBELIEVABLE

Sat, Mar 25 8:32pm · Erosive oral lichen planus in Autoimmune Diseases

Yes, I have had this lichen planus since 2013, the way you handle stress has a large part in starting this condition and I believe it starts in the stomach at least mine did. I started using the anti yeast prescription pills and that helps. Vitamin 12 1,000 mg and liquid Vitamin B’s help also.
Vitamin D 3 is important your doctor can give you Vitamin D in 50,000 units by prescription and then fall back to Vitamin D-3 Swanson.
My lichen planus is located under one side of my tongue and is raw. I found something that cools it down immediately “Dale Audrey
Cool Mint Ayurvedic Oral Pulling Rinse.” I carry some in the small bottle in my purse.
Toothpaste would be “Biotene” Don’t eat any processed foods. Only organic foods and NO sugar. only Truvia.
I will see a doctor in MD on Wed. so I will post end of week how that goes. I did not know that I also had a parotid salvia tumor
it was discovered in an unrelated scan from the errosive lichen planus that turned into cancer.
Erosive lichen planus should be checked every 3 months. It can turn to cancer quickly. Mine was stage 1.
I am working on the stress reduction with whatever it takes after the awful tongue cancer surgery.

Fri, Mar 24 7:26pm · tongue problems in Eye, Ear, Nose & Throat

Hi, Thank you for the information on your journey. I understand and wondered about taking a biopsy and another
one being different. What would you have done differently. SAID NO to radiation? Said NO to removing the 2nd gland
removed. I would think twice about targeted radiation.

Thu, Mar 23 9:40pm · tongue problems in Eye, Ear, Nose & Throat

Hi, I will attempt to answer some of your questions. I had a partial glosectomy, sp removal of the lower part of my tongue
as errosive lichen planus turned into cancer from medical negligence. I now have severe dysplasia in that area and lichen
planus in part of the area.

I will see a new doctor on Wednesday that specializes in these areas also a parotid gland tumor on the right side.
The tumor is located in the right parotid gland and in August 2016 I had a needle guided biopsy done at John Hopkins
and it was said not to be cancer. I realize they are only taking a bit from an area. The next step will be by the
advice of the new doctor I will see on Wednesday. It will be a lengthy train ride and hotel stay up north.

I did not have radiation after my tongue surgery because it was unusual the pain never left after surgery. Long story
but I believe the doctors and meds do their part and God does the healing.

I will post my findings, I understand about the facial nerve. It is my understanding if all of the tumor is not removed it
sort of bubbles up and grows. It is my understanding from John Hopkins and perhaps Internet that the surgeon would
go back into the scar (from ear to adams apple) where my lymph nodes were removed on the right side and remove the
parotid tumor.
I am sorry about your issues. It sounds like the radiation and removal of the parotid glands took all your saliva which takes
away teeth health and causes other issues. Where was all this medical done if you don’t mind me asking.