View Full Version : please, please, please help, flush & ulcers & crazy

02-10-2008, 03:43 AM
hi all...well, i will begin by saying that two weeks ago last thursday i went to my doctor and had great test results so we agreed to cut my steroids from 10mg to 5mg. i am also on mexotrexate, leucovorian, plaquenil and some folic acid. i used to be on an anti-depressant but did not see results so i discontinued it. so i was all geared up for good news. but..... then after three days of being at work ( i have very, very, very, VERY high stress job right now) i had mouth ulcers and tongue ulcers again. then had arthritis in feet, hips and shoulders. i called the dr. the nurse said to go back to my old dose of steroids and if no improvement in two days to go to the er or to come in (but my authorization is not approved yet since i am seeing a specialist outside my provider group because my provider group has one rhuemy for everyone).
anyway...here's the deal, i still have ulcers, i still have joint pain, but not every day, just about every other day, but it may be since i am increasing my aleve each day that i am nto feeling the pain so much sometimes.... :? i just recently had a conversation with a friend about how i feel so disjointed and such. after we talked, she called me the next day and said to me that from our conversation it seemed i was portraying i did not even have lupus, that everything was fine, that i was not sick, that i jsut had some sores in my mouth and rash on my face. and when she told me that, i had a hard time. i know i am sick but sometimes i think i am not and can hardly take my meds, i force myself to swallow them. i believe the tests must be wrong. i don't know, i am sometimes detached from reality but it is getting worse now because it has been pointed out to me. now, each morning when i wake up i feel chest congestion or a chest "rub?" but as i go through the day is is usually less noticable. i try to ignore it all. i want to pretend it is nothing. the worst thing is my memory. it is horrible!!! i cannot remember to do anything. i can't remember the time, the date, what i am doing throughout the day. i am a special education teacher for 1-3rd grade and i feel like they know what is going on better than me. i cannot remember anything sometimes. i forget words lately and forget what i am talking about. i sapce out and i get chest pain and head pain and almost black out. i have to constantly ask what i am doing. i also trip a lot, or fall down, like my gross motor skills are not working right. it is really starting to affect my work. i think the other teachers and my principal think i am stupid or crazy or something.
i do not want to go the er. i hate it. it takes so long and all they say is to talk to my specialist, i have made over 10 er visits in the past 6 months with this new lupus diagnosis. i can't do it anymore.
i am freaked out about having kids. the dr. tried to explain i have some ssr or srr antibody that can affect my fetus if i am pregnant. i am just scared and don't want medicine anymore and don't know what is normal. i feel like a psycho calling a doctor about ulcers and pain sometimes. i feel like i have lost touch with reality. i feel like i couldn't have lupus and it is a mistake. but then i look in the mirror and my face is flamed up like the "typical" lupus rash and i try to convince myself it is a sunburn.
is this normal? am i losing ym mind. am i more sick than i am thinking and accepting. are? these non-lupus symptoms? am i a drama-queen? am i over-reacting? i am not myself anymore, i am nothing like who ni was, i have horrible nightmares and terrible thoughts etc... i feel crazy and stupid and like i have no idea what is real and not-real. i feel like i am losing my mind and can't take these meds anymore, they are making me crazy i think. is it possible it is all the meds??
please, help me. do i need an er? or can i wait a month or two until i get authorization to see the rhuemy and then bring her this posting? i hope i am not crazy and someone can help me. i don't want to go living like this. i am too young, i can't go on with these thoughts in my head. i need help asap. thanks you everyone, i was really hard to write this but i hope something good comes from it.

erin :cry:

02-10-2008, 05:54 AM
No, you are not crazy.

I am not you, however, I have a few suggestions --- keep a personal daily journal. Write out your daily symptoms, fears, thoughts, frustrations. This is for your eyes only.

Next, make a list of the meds you are taking, the symptoms you and others are observing, the measures you are employing to come to terms with your illness. Your posted message is a good start --- it pretty much lays out your current situation. This list is for your medical providers.

Organize each category. Make every entry shorter than a line wide headlined by a bullet point. Docs and others don't have a lot of time and tend to scan rather than read a long narrative. We tend to forget some of the most important facts when sitting in front of a doc.

Add, subtract to the list with each change you make. Make sure all past surgeries and major medical treatments are on the list. Keep this list on your computer and keep a copy in your purse.

I knew my first meeting with my rheumy was going to be traumatic, so I took my list with me. He read through it and said it greatly expedited his dx and treatment plan. Sometimes we do not realize the connection between/among seemingly unconnected illnesses and surgeries. The docs are trained to connect the dots.

Good luck to you. Don't let others dictate how you feel. Follow your docs orders, including your meds dosages. Be proactive in your heath care. I personally think 'the list' takes you out of the crank category and gives the docs something concrete to ponder.

02-10-2008, 08:50 PM
Moxie has given you great advice, Erin. You KNOW how you feel; you KNOW that you're really sick. Don't let others make you second-guess yourself. Lupus is a disease that is sometimes 'invisible' and for many people, if they can't see something wrong, they don't believe anything is wrong. You know better.

I'm also a big believer in lists - I take one with me to EVERY appointment with my rheumatologist. She's used to it now! Sometimes I give her a copy of the list, and sometimes (if it's just a short one) I don't need to. But I always take one with me. And I keep them all in my records at home. I carry a list of meds, my diagnosis and some general notes about my condition with me at all times, and I have one posted on my refrigerator at home (so my family knows where to find it, if I can't tell them.) You have a lot of symptoms, and while they may not ALL point to lupus, they are clearly indicating some kind of health problem. Be sure your doctor knows about all of them, when they come, when they go away, anything that you can think to tell them. And, like Moxie says, short and to the point.

Please keep us posted on how you're doing. We really, really DO understand Erin. Many of us have been there and we will help you with advice, or maybe just a listening 'ear', in any way we can.


02-11-2008, 02:43 PM
I am really concerned about you. Many of the things you list in your post scream at me (as a nurse) "Neurological" or brain. I am not telling you this to scare you or make you nervious, but you really need to be seen by someone and soon. The list the others talked about is really super important, particularly with your confusion and forgetfulness. Don't leave out anything. In fact, print your post and use it to "bullet point" your symptoms, if you need help. The forgetfulness, time confusion, emotional changes, etc., added to the physical symptoms of stumbling, concern me very much. This very likely would be taken seriously by an ER (if the practitioners are worth a darn), even. You need an MRI and or vascular evaluation of your brain. With a disease like Lupus, any organ in the body can be effected, and your site of interest may well be the brain.
Please be seen soon, my friend, and keep us posted on how you are doing.

Hugs and prayers,

02-11-2008, 03:00 PM
No you are not going nuts, nor a drama queen.

Having Lupus, thinking about the possibilities it may bring and the opportunities that may be lost is a lot to deal with. There are no instructions on how to deal with a chronic, no cure, manageable disease.

We can tend to, care of, the reaction of our mind regarding being told life may not be like it once was. Caution, caution...red lights and bells going off inside our thoughts. And being young that is like a never word when one is "suppose" to be enjoying life, being free, learning, taking risks...planning your future yet feeling non-commitable to ourselves, our life and other people because who knows what tomorrow will bring. I feel that is what you feel like...because I feel like that too.

I understand. You feel you've been robbed of who you are, your representation of self is. It seems like your self expressions is now filled with forgets and tumbles. The disease makes us feel unsure. And we may feel saddened, self pity because we are mourning ourself. Our "planned" future, our new found physical appearance, missing the old.. our quick memory, our confidence...and etc. I mourn me, I cry for me. Then I find another new me, by making the change happen sooner, to adapt sooner to keep my mind and spirit intact before I have to make a forced change because of Lupus. Get him before he gets me thinking. Through exercise, stretching, foods, rest, abilities, settling today before I think about tomorrow, new makeup, new clothes...

Posting here may not be all you need to help you through this Erin. Have you though to speak to a counselor, a 24 hour nurse or the like about dealing with this disease mentally?

Have you had any time off from work to grasp, take it all in since being diagnosed?

Have you read any books about Lupus? Have you read The Lupus Book Third Edition? Have you looked at how some others are doing well, having children, long remission....It can be you too....it can bring some positive thoughts to your mind. I am sure you mind is racing, bleak, wondering, eh?

Try to bring your thoughts together, focus. I was going to say sometimes, but I think all of time, faith is what brings it in all clear for us. When you have nothing left but God, then for the first time you become aware that God is enough. I'm praying, asking... Dear God, Father Almighty hear my prayer. I ask of you to bless Erin, keep her near and help her to find her path. Amen

I have yucka pooie days, dark thoughts swirl through my head. I found when I had accepted I have this disease, I started to heal my mind of the denial and search for ways to tame the beast. Taming it, it will not have stress to feed off of. Without stress it may prevent it from getting bigger and wanting more of us...

Sometimes I fall in the hole still, but now I know how to look for the ladder. I can help you find your ladder, Erin.

I know I pretend to be in denial, helps rest the mind..to dream, forget about it for awhile. Stop the balancing act for a minute. But having Lupus we have new rules to live by, prevent, prevent...you will find your balance Erin. I know you will, you are here searching and you may find your answer here, in a book, in a word..but it will come for you.

You don't have to be any ones hero except one to yourself.., just take care of yourself...

Stressing, worrying about what others think, worrying about tomorrow is probably aggravating the Lupus, creating more ulcers. Here are some self care for you mouth till you are able to see your doctor for steriods...

Don't stray to far, read on, in other posts, lots of good things are on this board. People filled will life, happiness, content, accepting. Ways to acheive that. Look in the Faith and Web link Forums too.

As Saysusie says, Be your advocate!

Arm yourself with knowledge and you will feel a bit better, a bit more in control. Now give yourself a hug from me, from all of us....tighter...

I copied and pasted from a quick searc.....

And here is a link for OTC survey of what works and doesn't...http://www.mouthulcers.org/treatments.php

If you have sores in your mouth (mouth ulcers) or infection..
Brush your teeth regularly with a soft toothbrush using alcohol free mouthwash (a baby’s toothbrush is good)
If your mouth is too sore for a toothbrush, you can clean your teeth with a foam mouthcare stick or a piece of gauze dipped in the mouthwash. Ask your nurse for advice.
If you have sores in your mouth that are crusty, rinse with mouthwash several times a day to loosen the crusts
You could try a gel mouthwash that sticks to the inside of your mouth and reduces pain from mouth ulcers – ask your doctor about these
If you are able to eat, choose bland, soft foods – mashed potato, well cooked rice or eggs for example
Don't eat spicy or salty foods, dry or crisp foods, citrus fruits or juices
If you can't eat, you must continue to try to drink plenty of liquids – water is fine
It is better to take painkillers and be able to eat and drink than to try to carry on without

Use anti fungal or other mouthwashes your doctor has prescribed, even if you don't like them!
Stay away from foods that are sharp or crunchy, like crisps or French bread, which could scrape or cut your mouth
If you can stand it, a salt water mouth rinse can help to stop bacteria growing – use a half teaspoon in a cup of water at the end of your mouth care routine
Avoid alcohol (especially neat spirits), smoking and using toothpicks. They will all irritate the lining of your mouth and may make problems worse.
Some people say sage, thyme and 'German chamomile' help soreness and prevent infection by soothing inflamed skin – steep a teaspoon of dried sage or thyme, or 2 tablespoons of German chamomile flowers in a cup of boiling water for 20 minutes, strain and cool, and use as a mouthwash several times a day

02-11-2008, 07:51 PM
Its all really tough i know but the best way to deal with it all is learn to laugh about it forget its frustraiting. Remember Dori the blue fish from Finding Nemo? I think we can all relate to her (a boat ive seen a boat follow meeee)

I also agree with Oluwa that talking to someone also helps especially someone who can relate to whats going on in your life.

02-11-2008, 08:28 PM
thanks everyone. i was really in the dumps when i wrote that. i just can't get it together these days and i am not a person who has experience failing or giving up on anything in my life. i am still working through it trying to get a grip on what i need. i am taking your advice and going to see the dr. sooner rather than later because again today i fell down and couldn't figure out why. it is really frustrating. but, i know i need to keep my head up and be positive. i am trying, i guess i just keep wishing for that miracle cure that will make it all go away and this is not going away at all since it started. but, it is better and i need to remember that. thanks for all your words and help and time. i appreciate it more than you can know! best thoughts to all of you and i will keep you posted on reults or changes. thanks again :?

02-18-2008, 06:20 PM
I do get mouth ulcers from time to time. A few years ago I had a really really bad time of it.

I was at the dentist crying because my gums and tongue hurt so much. He asked me what kind of tooth paste I used...when I told him colgate he freaked. Told me to switch to something else right away. And he was right. As soon as I stopped using the colgate my mouth cleared right up.

I just get them every once in a while now. He said there was a chemical in the colgate that some people really seemed to react badly to. He always recommends he's patients switch to anything else.

I know the lupus is the root cause of the sores, but I wonder if the tooth paste aggrivated it.

And I'm sorry if posting the brand name is a no no...just thought it might be helpful for cranbrycloud to know about it.

02-18-2008, 06:21 PM
I do get mouth ulcers from time to time. A few years ago I had a really really bad time of it.

I was at the dentist crying because my gums and tongue hurt so much. He asked me what kind of tooth paste I used...when I told him colgate he freaked. Told me to switch to something else right away. And he was right. As soon as I stopped using the colgate my mouth cleared right up.

I just get them every once in a while now. He said there was a chemical in the colgate that some people really seemed to react badly to. He always recommends he's patients switch to anything else.

I know the lupus is the root cause of the sores, but I wonder if the tooth paste aggrivated it.

And I'm sorry if posting the brand name is a no no...just thought it might be helpful for cranbrycloud to know about it.

02-18-2008, 06:28 PM

Thanks for the Nemo reminder. I have the DVD and I think I just may watch it to sleep tonight...

ERIN, Oh, I get nose ulcers, yucka...Huge one inside and my nostrils are so small as it is and to have an ulcer, and with the swelling..Egads, it closes my little air hole off....

Gasping for air,