Author Topic: GOD PLEASE HELP ME!  (Read 9352 times)

angeldancer

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GOD PLEASE HELP ME!
« on: February 17, 2014, 08:09:37 PM »
MOUTH SORES ON STEROIDS!  I GOT RED LIPS, WHITE PUS SORES ON MY LIPS, PUS SORES IN MY ESOPHAGUS.  THE ROOF OF MY MOUTH AND TONGUE ARE RAW.  MY HANDS ARE SO DRY THEY HAVE SORES COMING INTO THE MIDDLE OF MY FINGERS.  SAME THING FOR MY TOES.  MY FACE LOOKS LIKE I WAS IN A FIRE ( MY SON DIDN'T MEAN TO HURT MY FEELINGS).  I LOOK LIKE A DRIED UP PRUME.

CANCER SUCKS AND ITS MAKING ME THIN AND UGLY.  I HATE CHEMO AND RADIATION AND DON'T KNOW IF I CAN WITHSTAND ALL THESE REACTIONS.  MY SJOGRENS IS STILL FLARING SO I AM FEELING DARN AWFUL.  ONCOLOGIST IS JUST NOT HELPFUL. 

I WANT TO LIVE AND THIS IS MAKING THINGS SO DIFFICULT.  I HATE PAIN. I HATE PAIN.

I WANT TO EAT?  PLEASE GOD TAKE THE PAIN FROM MY THROAT?

AT LEAST IF I DON'T FEEL WELL COULD I AT LEAST LOOK HALFWAY DECENT.  I GUESS IM STUCK IN THE HOUSE. 

GOTTA VENT I'M HUNGRY. 
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

slccom

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Re: GOD PLEASE HELP ME!
« Reply #1 on: February 17, 2014, 08:54:43 PM »
{{{{Gentle hugs, Angel!}}}} I wish I could offer you something else.
Sharon

irish

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Re: GOD PLEASE HELP ME!
« Reply #2 on: February 17, 2014, 09:43:50 PM »
I am so, so sorry that you are suffering so much. I hope that you can call someone or talk to a nurse at infusion/chemo, etc who can help your with things to do to treat side effects of chemo.

There is a product out there called Magic Mouthwash that has to be ordered by a doctor. It has prednisone in it, an antibiotic, benedryl and lidocaine. I think this is the right list of ingredients. The lidocaine helps to kill the pain. It is used for many different types of conditions. The other thing that may be in there is Nystatin which is a drug used to treat yeast. I would think that you might have yeast also as many of the chemo drugs can cause yeast.

Please be aggressive to get some help as they should be seeing to your physical reaction in order to keep you healthy during this ordeal. Find someone to advocate for you and help you. Good luck and keep us posted.

KatieB

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Re: GOD PLEASE HELP ME!
« Reply #3 on: February 17, 2014, 10:18:00 PM »
  I'm so sorry that you are having such a hard time. You are in my thoughts.
Sjogren's, essential tremor, gerd, stage 3 kidney disease, h63d homozygous - elevated iron
Meds- plaquenil 400mg, predisone 10mg, sumatriptan succinate 100mg, famotidine 40mg, metoprolol tartrate 50mg, pantoprazole 80mg, methotrexate injections, various eye-drops and various vitamins

Belsey1

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Re: GOD PLEASE HELP ME!
« Reply #4 on: February 17, 2014, 10:32:13 PM »
I have heard of the Magic Mouthwash, but do not have any experience with it.  I wish I had some advice.  The only thing I can think of is Kaegan water.  It is an alkaline water and is touted as having "miracle" results in bringing the body back in balance.  Find a place that has it in your area and give it a try.  God Bless you and praying for relief.

gurs

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Re: GOD PLEASE HELP ME!
« Reply #5 on: February 18, 2014, 03:51:21 AM »
oh my sweetie..my heart breaks for you..I cant even imagine what you are dealing with. The added dryness from the sjogrens and then chemo..oh lordy...Agree about the Nystatin, as I have been on daily meds for years trying to battle with my systemic yeast.
Oral nystatin liquid might be good for you because it has sorta like an anti-numbing agent in it, but it also has sugar. I take an oral nystatin powder the pharmacy gets for me and I mix that with water. No sugar..its just a yellow compounding powder.

hoping you get some relief soon! hang in there!!

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Jenny

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Re: GOD PLEASE HELP ME!
« Reply #6 on: February 18, 2014, 04:33:52 AM »
I'm so sorry you are going through this torture. I can't give you any advise, but you are in my prayers.
63 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
Maloxicam, Lisinopril, Norco, misc.vitamins
4 discs in low back fused. Shoulder replaced 2015 & 2017 Need knee replaced.
4 hand surgeries

quietdynamics

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Re: GOD PLEASE HELP ME!
« Reply #7 on: February 18, 2014, 05:47:32 AM »

I am so sorry and I hope this will pass for you.

I feed my mother cold apple sauce, as it was soothing and easy to digest.

Maybe some will help?

I also would mix olive oil and a bit of mouth wash for her.. to sooth her mouth.
Perhaps until you get the wash that has been suggested?
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Velcro

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Re: GOD PLEASE HELP ME!
« Reply #8 on: February 18, 2014, 05:55:34 AM »
So sorry Angel.  I am sure this is so hard but you can make it through!  I have faith in you!

finallyadx

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Re: GOD PLEASE HELP ME!
« Reply #9 on: February 18, 2014, 05:57:50 AM »
So sorry to hear you are in such pain and discomfort.  I do have experience with prednisone and it causing mouth sores -I am CERTAIN my mouth sores were not to the extent it sounds yours are but I received a prescription for the nystatin mouth wash - it helped.  I also drank alkaline water - not the Kaegan (?spelling) type but I found some alkaline water at the grocery store and drank just that and that seemed to help as well.

A call to the dr is certainly warranted to find some relief and comfort in all of this for you.

Please keep us posted.

My thoughts and prayers are going out to you right now that you find the strength and comfort to get through this entire ordeal.

Hugs,
Kim (aka finallyadx)
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

cccourt1942

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Re: GOD PLEASE HELP ME!
« Reply #10 on: February 18, 2014, 07:07:51 AM »
Orosoothe...it is for chemo patients.  My dentist gave it to me for burning mouth/tongue. 

Hon...you live in CA.  When my bro was in CA (dying of leukemia) pot was readily available.  He was too sick to use it.  It sounds as if you are too.  But give it a go.  It will help you eat a bit.  I hurt for you ...but can't help you.  Know we are here.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

ohiolady

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Re: GOD PLEASE HELP ME!
« Reply #11 on: February 18, 2014, 07:14:08 AM »
Angel,  my heart breaks for you.  Can you drink Ensure?  Warm salty water with baking soda swished around mouth is also soothing.

Sending you a big hug.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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jpd54

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Re: GOD PLEASE HELP ME!
« Reply #12 on: February 18, 2014, 07:28:45 AM »
Bless you Angeldancer.  You are in my thoughts and prayers that you get some relief soon.  Know that we are all with you. 

       (((hugs)))    Jennifer
SJS, Fibro, Osteoarthritis, Osteoporosis, GERD, Rosacea, TMJ

Celebrex, Gabapentin, Lasix, Potassium,Hydroxychloroquine, Lexapro, Lisinopril / Hydrochlorothiazide, Linzess, Metoclopram, Nexium, Oracea, Savella, Simvastatin, Vitamin D, Voltaren

Sleepy In Seattle

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Re: GOD PLEASE HELP ME!
« Reply #13 on: February 18, 2014, 09:28:20 AM »
Oh, honey - I am soooo sorry you are suffering so much.  :(

Know that so many of us are out here thinking of you and sending you every good wish and thought and prayer....

And please...ask your doctor about some of the things folks here have suggested. If you don't have the energy to do it, ask a family member/friend to be your advocate and do it for you. There should be SOMEthing they can do to help - at the very least, your doctors need to know how you are reacting to the medications and treatment.

(((((((hugs))))))))
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Carolina

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Re: GOD PLEASE HELP ME!
« Reply #14 on: February 18, 2014, 10:12:53 AM »
Angel, it sounds awful.  It is awful.

Chemo on top of surgery on top of chronic conditions......a recipe for horror.

There are no words of comfort....only quiet, rest, time, relief.........some day.

This is when I want to be in suspended animation. 

This is when relaxation and meditation are almost impossible to achieve.

Be as gentle with yourself as you can, Angel.  In your heart you are dancing.......

Hugs,  Elaine

Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3