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mrstjscott
05-10-2011, 09:45 AM
Hello all. It's been a long time since I've visited or posted. So many things have happened since I last visited - father-in-law passed away. Birthday was May 6, sister died May 7 and then May 8 was Mother's day. Not quite a happy one.
So, I have this strange thing growing on my eye. Sometimes it bleeds. One doctor told me that it is from Lupus. IDK if I believe that. Anyway, it is slowly getting bigger and my vision is getting worse.
Also, does anybody have any problems with their lips? My lips are super sensitive. They burn, crack, and are swollen right now. It is hard for me to eat or drink hot foods and liquids. Any kind of seasoning burns my lips. My tongue burns too.
I recently moved back to Phila and I have not received medical insurance to supplement Medicare.
If anybody has any suggestions, I welcome them because eating is so uncomfortable and painful for me.
Oh yeah, it even hurts when I brush my teeth. If the toothpast (ANY TOOTHPAST) touches my lips, it hurts really bad.
I can't wear any type of lipstick and I can only use a certain lip balm that soothes the pain.
HELP!!!
I forgot to add that I cannot use any sort of mouthwash at all. I've tried the non-alcoholic kind and my lip and mouth still burns. Sometimes I lick my lip and it burns. EVERYTHING hurts my lip (the bottom lip, mostly). I look like a freak. Then there are the black scabs on my forehead. My entire face is broken out. When I wake in the morning, my face is full of rashes, dry skin or new sores. My scalp is getting more and more scabs. I try not to do too much to my hair because my scalp tends to stay full of scabs. An YES, I do pick the scabs because they just get on my nerves so badly.
If I can, I will post a picture of how I look.

lizbond36
05-10-2011, 10:28 AM
Sorry you hear about your loss, I don't have anything like that. I am new to Lupus I know someone will come along. I notice I chew on my tongue don't know why. I just wanted to stop by and give you my thoughts for your loss.
Hugs
Liz

tgal
05-10-2011, 10:44 AM
I too am sorry about your loss. All that is going on with you is causing stress which does, in fact, cause flares.

There are several types of Lupus and one of them is called Discoid Lupus. This one is where the skin itself gets affected. Several of us have both SLE and Discoid Lupus. The rashes, lips and skin issues could very well be from Discoid Lupus. I would suggest that you go to an eye doctor to have the bleeding in your eye checked. We should never ignore things going on in our eyes. It is better to be safe then sorry.

Keep us posted and I hope things get better for you soon

mrstjscott
05-10-2011, 11:24 AM
Sorry you hear about your loss, I don't have anything like that. I am new to Lupus I know someone will come along. I notice I chew on my tongue don't know why. I just wanted to stop by and give you my thoughts for your loss.
Hugs
Liz

Thank you Lizbond for the condolences. My sister passed unexpectedly and I sat with her body for about 3hours before the ME came to get her. Thank you again.

mrstjscott
05-10-2011, 11:28 AM
Thank you Mari for the condolences. I do have discoid and systemic lupus :(. My face has been acting up for about a month now. Nothing is helping and everything is hurting.
I am trying to get medicaid because I can't afford to pay for medicare. I have no steroids or any type of medicine that can help me right now.
I just walked to the store and it felt like my bones were going to snap in both of my knees. This pain is almost unbearable. I HATE LUPUS AND ALL IT HAS TO OFFER. IF I WASN'T AFRAID TO DISAPPOINT GOD AND GO TO HELL, I WOULD HAVE OVERDOSED. I AM SO DEPRESSED OVER MY SISTER'S DEATH AND NOT BEING ABLE TO BE INTOUCH WITH MY CHILDREN AND GRANDCHILD. SOMETIMES, THIS IS MORE THAN I CAN BEAR. MAYBE I HAVE TO REALLY TURN EVERYTHING OVER TO GOD. I KNOW HE CAN HANDLE IT.

BonusMom
05-10-2011, 10:41 PM
I am so sorry for your losses and the agony that you are surely feeling in your mouth, lips, face and scalp.

I have Sjogren's Syndrome and sometimes have burning mouth and lips. I take four mgs of Folic Acid daily to prevent canker sores (when my WBC's are low I always get them). Also, if I have canker sores, my rheumy suggests swishing with Pepto Bismol several times a day for relief. I use Crest Pro-Health Mouthwash-it doesn't burn.

I use Aveeno or Eucerin creams (not lotions) for moisturizing as my skin just keeps getting more of a lizard look without it.

Happy belated birthday. Again, I am very, very sorry for your losses.

Oh, and when you take a drink or sip of water, swish it around your mouth.

SandyR
05-11-2011, 07:12 AM
I'm so sorry to hear about your sister. I know you are very close to your family from seeing your FB posts but I had no idea about your sister's passing. I am so sad to hear that - a sister is a special kind of friend of the heart and I know your heart is a little more broken today than it was a few days ago. (((Hugs)))
Please make sure you are talking with someone - perhaps your pastor - about your feelings (which I think are perfectly normal in this situation). I imagine all this stress is making your current skin pain worse. You and your family and your sister are in my prayers. XOXO

mrstjscott
05-29-2011, 01:51 AM
Thank you Sandy. I am sorry for just now getting back to you. I usually disappear for a while and then resurface. I went to a new doctor last week and from the things I told her, she suggested I talk to a psychiatrist. I agree. So much going on. Now the doctor's office called and said the doc wants to talk to me about inflammation. Where? I don't know. Having major tingling in my feet and legs. Very hard to walk sometimes. No matter WHAT shoes I wear, my feet hurt and BURN. What's that all about?
Thank you Sandy for your prayers and listening ears. GOD hears our prayers.

Linda From Australia
05-29-2011, 04:56 AM
I am glad you managed to get to see a doctor to help you with your depression. How is you eye going? Have your face cleared up yet?
You must be feeling miserable inside and outside. Come on here whenever you feel down and need someone to talk to

mrstjscott
05-29-2011, 02:38 PM
Hi Linda. I haven't seen a doctor yet for the depression nor my face and no, my face has not cleared up yet. Right now, I am a ball of miserable and irritable. I need a nap - now.
How are you doing, Linda? Australia seems like a very nice place I would love to visit (in my head). Not too sure I want to fly that long.
Well, have a wonderful weekend.

Peridot20_Gem
05-29-2011, 03:08 PM
Hi Theresa,

Sorry to hear about what's been happening but refering that spot in your eye is it a red one?? which then loses blood because it may be due to your blood pressure, i've been looking it up for you.