Hi it’s Debbie! Just wanna say hi to all of my friends on this forum! I miss y’all! For past 21/2 years I’ve been busy taking care of my Hubby Stan! He had bladder cancer, heart attack and His Alzheimer’s has progressed, as they said it would after a round of Chemotherapy and Radiation! He has no cancer, but has no words cuz he forgot them! He’s been in great place for 3 months now, as I can’t take care of him anymore! I’m waiting on Veterans Administration to get him with his Buddies from Korean War! As was his wishes! I’ve been ill of late as I haven’t had time to care for myself! I have this new disease that I suffered for 5 months with! Went to dentist, Rheumotologist and ENT and she cured me! I have something called Burning Mouth syndrome! Rare they say! Only 20,000 people in USA have it! I went to ENT and she took me off plaquinil immediately, gave me special paste for my mouth and Mary this is for you~~~ Since I had 6 stomach operations, I was depleted of Vitamin B12! She said if I don’t get Vitamin B12 shots, MY BURNING MOUTH SYNDROME WILL COME BACK! Now I go once a month for my B12 shots! It helped cause it didn’t come back! I’m Blessed cause it was hell! It comes from Sjogrens Syndrome! I recently had hematoma on my stomach which got infected of course, They cut it to release the blood! I got it from my Lovenox shots! They said I hit a blood vessel! After 2 years of giving myself shots this is a first! Has anyone else had that happen? It was painful and size of baseball! I’m trying to take care of myself now, but still have my Mentally Challenged Stepson to care for! He’s developed Parkinson’s! It’s been a long road! Another for Mary I’m on hi dosage of vitamin advice! I take one pill every week now! I also take DOLEVENT FOR MIGRAINS! Had one for 6!weeks and Neurologist couldn’t help me accept for Dolevent! It has Vitamin B and coq10 in it and one more ingredient! It has helped me immensely! I can’t wait to hear fro Y’all! Missed you all! Not so fab and Mary and Kirstin! Omg all of you!!! Godspeed
Hi I’m back!!!: Hi it’s Debbie! Just... - Hughes Syndrome A...
Hi I’m back!!!
Oh Mary that was Vitamin D I’m on once a week as I’m depleted also
Hi Deb!
Good to hear from you over there. Good with the B12 and Vit D and other vitamins (Mary´s advice).
Sorry about your husband but as you say you can try to take care of yourself better now.
I am 75 now and know it when I look at my grandchildren. I have my Warfarin at a high INR as usual and am happy with that. Also well treated in the hospital. I sing a lot but have not started to paint yet and therefor I still hang on here.
I wish you well! GODSPEED! Kerstin
Hi, well done for getting so much sorted out, make sure they keep an eye on your folate and ferritin also with your B12 testing. I am so pleased that the things you are doing with your doctor are working for you, sending you very best wishes. MaryF
Sending you a hug - have missed your positive views xx
And I’ve missed Y’all? How’s DAVE and Notsofab doing? Miss everyone! My life crazy, but must make time to get better! I am really trying LOVE TO ALL AND GOOD HEALTH HAPPY SUMMER!!!
Your life has always been crazy but only because of your lovely attitude xx
Dave & Notsofab having a break at mo - so you have to put up with me, Ros, Mary & Kelly for now xx
Ok Holly nice to hear from you! Is all ok with Notso fab and DAVE? Yes I’m nuts and try to find humor in all I do! What wud I do cry, no I refuse so I laugh instead! Godspeed
Oh Kelly from Texas so cool wud love to hear from Kelly miss everyone! Had rough day on phone for 5 hours trying to get the care my poor Hubby needs and deserve! Mentally exhausted! Watching out USA politics so I can laugh out loud!
Hey Deb!!!!
Howdy Howdy from the Lone Star State! 🤠🌵
Lord Have mercy I’m busier than a three legged cat in a sand box the last two days.
Got a sick kid at home. He went on a family trip and came home with ,” Peruvian Plague.” High fevers, etc. Today was trip to doctor- steroids and antibiotics.
I’m very glad to hear you have some plans in place to help with your husband.
And the Sjögren’s mouth complications. That is very good news. It makes total sense. I know you must feel such relief. The Dolevent is a life saver for you, I’m going to look into this. Monday my son sees my Hematologist ( we share the same one.)
Great to hear from you again, Deb. It’s been too long!
Oh bless you .you certainly having and had it tough.seems like you are quite an earth angel.without you were would your family be.you are such a fighter caring for them and struggling with poor health yourself.hope this new condition settles and medication boosts you
Funny u should say Earth Angel I love the earth and the forest and trees and my specialty is Rocks! Love my rocks they have a certain positive energy! Have them all over the house from everywhere I’ve been! There’s a story behind them all! Hope y’all are Healthy and Healthy! Godspeed
Hi Deb! I love your attitude! And now, my latest joke:
So, you ask me why I don't invite John Milton over for game night anymore? Its because he always loses a pair 'a dice!
You certainly have your hands full, but I’m glad you’re doing better and getting things sorted out. Burning Mouth sounds painful. Sorry about your husband but it sounds like he is in a good spot with good care. I’m going to look into the dolovent for my migraines. Welcome back 
Yes I get it on amazon! It’s very helpful I take 2 in morning and 2 in evenings! It really worked for me! Want to tell Kelly in Texas to get on Amazon! Don’t know if u have Amazon in UK, but I get 3 bottles of I think 2 or 300 capsules! It also has vitamin B and Magnesium I think and COQ10! Please anyone with Migraines try it!!!
Thanks! I’m in the US, so I’ll have a look on Amazon.
Ok great where I live on Long Island, New York! Nice to meet you
Blood too thick, blood too thin, what a mess I’m in!!!!!
Reintroducing myself
Can anyone feel blood clots moving in their body?
Hughes Syndrome
