Just need to talk. I am getting so tired of telling my family that "I don't feel good." I wonder what they think. Do they really understand. I know they care, but I am feeling embarrassed to have so many issues. I mean if you are diagnosed with this or that, you tell your family/friends and thats it. But with SjS, it seems like every day brings something new.
I am not complaining, just embarrassed I guess. I wake up in the morning and can hardly move because of the pain, so I probably moan and groan getting out of bed. Then off to brush my teeth, which is so painful due to the mouth ulcers, and just spit out all of the blood. My neck pain gives me a headache. My skin is on fire, so I probably groan to myself over that.
Something else that drives me crazy is always thinking and wondering, "should I get this checked out." So you weigh what will go on in the doctor's office......he won't know what to do, he won't understand what you mean, etc. So its probably a waste of time/money. So you stay home still wondering.
I don't mean to be a downer at all, I just know I can come here and let my heart out. And for that, I say "thank you." Everyone here is wonderful.
Of, just an FYI, dr. sent me a note that my Vitamin D is very low. I say that because I have seen many others having this problem.
Thanks for listening. :)
Designer
Designer:
You've had your mouth issues going on for a long time, wonder how you've been managing to meet your nutritional needs? Think you really need to get your mouth problems solved and quickly. I was exactly where your are now in Oct, after months of misery.
One suggestion I got from my recent visit at Johns Hopkins was a throat culture if it gets really bad again. This sounds like a very simple swab procedure and may help diagnose what's going on with you.
If I may quote myself you may be interested in my own treatment:
Quote from: Chico on November 20, 2008, 10:08:06 PM
Still taking my 1 a day but when my mouth begins to threaten a burn or sore I take 2. All resolves after a couple of days. Nothing like those bad old months of agony.
Chico
Hi Designer,
I'm sorry that you're having all these problems, and I sure do understand...I don't mention my medical problems to anyone other than a few people. It's sad that when I mention them to a few family members, you can see their eyes glaze over, they don't care; as long as you can function, what's the problem? :(
Please do see what your doctor recommends to boost your vitamin D level, that should help you in the long run (it took a while for the 50,000 units to help me, but it has). I know that several other members also got relief when they were started on it.
I'm sorry to hear that your having a lot of mouth problems, do you have a good dentist and ENT? Until this mess started, I would get a cold sore now and then. Now a days I get canker sores like crazy, dang, one goes away and another one appears. The dentist keeps telling me to cut out the spicy food and chocolate (spicy food, okay, chocolate, nope - not happening! :D). I know when I brush my teeth, I don't have the usual bleeding, I get small clots ???, it's strange.
Please do come often and don't worry about complaining here, we have large shoulders and we care! ;) ;D
Take care -
Patze
Good Morning Designer,
I was wondering if you have tried the products Gly-oxide or Colgate's Peroxyl for that mouth misery. I swear by this stuff. Whenever I find something starting to get sore in my mouth I swish with the Peroxyl. If it turns into something bothersome, I use the Gly-oxide.
This usually clears things up in a day or two.
I hope you will see if your doctor will start you on the Vitamin D replacements. It has helped me a great deal and I was really low on it.
It's not your fault you feel the way you do, your family will just have realize this. I mean, it's not like you fight your way out of bed in the morning and say "I think I'll be sick today". We don't get to make a choice.
Hang in there and come vent anytime you feel the need. As was said "we have broad shoulders" and that's why we are here. WE ARE FAMILY!
Hugs, Pooh
Hi guys,
Thanks for your support, I appreciate it so much.
Chico, this treatment was mentioned to me by my dentist as a joke. ::) Apparently he didn't understand that it really can be used and helpful.
Patze, I was told by my endo to take 1800 mg. of Vit. D/day. That is probably because my body cannot handle the 50,000 that she had me try about a year ago. So, I started taking the D, hope it helps soon. Thanks, and I agree about the chocolate. You can have all the spice, but the chocolate keeps me sane!
Pooh, after you had told me about the Colgate Peroxyl, I went out and bought it. After I peel myself off from the ceiling from the burning pain, LOL, it isn't even helping. The dentist has checked me over and over and doesn't know what to do. I was thinking this morning maybe its time to see the ENT.
Maybe there is something? he can check or do. I will let you know.
Designer
Hi Designer :)
My husband bears the brunt of me moaning. I don't really have any other family. My sister lives 250 miles away and my brother lives on a different continent. Moaning at work would just elicit comments like "Well - none of us are getting any younger!"
So when I want to moan - I moan in here - and someone always listens.
Your mouth issues sound really severe. I think you really need to 'bug' your medical team to do something about them because with even one area of pain taken out of the equation, things can feel better.
Take care - Scottie :)
Designer,
You mentioned that you are very low on Vitamin D, a common complaint among Sjoggies, may I ask what part of the country you live in?
I asked because doctors often say, well everyone is low on D in this area of the country, due to the lack of sunshine. There is a difference in being low and being very low! Anyone can feel free to chime in on this one.
I live in Nova Scotia and it seems we get a pretty equal amount of sun and blah weather. Someone on a news report said that just 10-15 minutes of sun a day is all that is needed for vitamin D. But I hate going out in the cold, so I try to sit by a window that gets good sun exposure and hope that it helps.
I now how it feels with stunned family members. I have a few that tell me I should snap out of it. I'd like to snap them!! My psychologist said that no matter how intelligent someone is, if they haven't experienced the problem they'll never understand it. I totally agree. She mentioned this mainly because of my depression and anxiety. When they ask why I don't work, my husband said "it's because of her health problems". They answer back "we all have health problems". Drives me nuts. So I usually don't bother talking to them about it anymore.
I'm sorry about your mouth problems. I haven't encountered that yet, but I do remember my mom saying that a good salt water rinse helps any problem with the mouth. I use Sensodyne toothpaste and it's not as strong as regular toothpastes. It really helps with my sensitive teeth.
Take care
Susan
Designer:
You expressed perfectly how I feel. I am really embarrassed to be sick around family and friends so I just keep it to myself and try to act "normal" which is exhausting too.
I got a free sample of Super Lysine + ointment from the Sjs Foundation. It is made for cold sores but I put it on a mouth canker sore and it worked like magic. I wish I had some more as I can feel another sore coming on right now.
QuoteSomething else that drives me crazy is always thinking and wondering, "should I get this checked out." So you weigh what will go on in the doctor's office......he won't know what to do, he won't understand what you mean, etc. So its probably a waste of time/money. So you stay home still wondering.
Exactly how I feel about my doc! If I could write my own prescriptions, I would never see a doctor again - heck, I do all my own research - why can't he do that?
I started taking Vitamin D and I feel so much better!
Hope you feel better soon.
Regards,
Sue
I understand exactly what you mean.My mouth is burning like fire today and I know what's going to happen again.My new Rheum. just told me my vit.D levels are low.I told the GP yesterday and he said it's the latest thing they're doing now and everyone is probably low.He said he's probably low himself but it can't be a bad thing to start taking a suppliment just understand it's not just limited to me.Good to know.I read some literature from the Rheum. on Sjogren's and Fibro and it all was if you do thus and so you can lead a normal life.I'm so angry!That's such a symplistic way to put it.All these miserable symptoms we're told to just suck it up and take it.Burns me up.I plan on underlining all the crap and telling my Dr. what's what!
One day they will take this more seriously,when they know what and where it all comes from but I doubt that will happen for me.In the meantime I'll just have to show people and Drs. that it's a serious miserable illness to me and want respect and treatment.All that being said I find I have to suck it up far more then I should or want to.
Ruby
What ever happened to the days when family members were supportive and stuck together, helped each other out? Was that something I just saw in a Norman Rockwell illustration and confussed that with reality.
It seems like everyone is at each others throat and shottenfreud runs rampent in our society today.
Epson - it was all a myth, as you well know. Just look at the expressions on the faces of the people in Norman Rockwell paintings and you know they were each in their private heck. And each separated from the other, with no connection or warmth. Not even some healthy anger to fire them up.
Designer - I think I understand what you mean about being embarrassed talking about how you really feel when people ask for an update. For me it comes from a mixture of being quite a private person (not easy with long term health issues, as we all know) and always having been the person who gave support, not asked for it. I've decided that it's not going to do me any harm to shift a little in both those areas of my personality!
I tend to answer queries with 'Oh it's a bit of a tough day' or 'I'm feeling a little overwhelmed right now'. Then if people ask for more information I'll tell them some details, but not too much. If they reply 'Well, you should hear how my day went yesterday ...' or 'Overwhelmed? You have no idea what my life is like ...' then I reckon they're not in the mood to listen or empathise! Not the most subtle approach I'll admit, but it works for me.
Love to all - Chana
Chana,
You are right about Rockwell, that's why I hate people and love dogs! ;)
Hi Epson, you're too funny! And I also agree, "Rockwell Utopia" is for dreams, reality often falls way short.
Hi Chana, yep, I know what you mean about giving out just enough information without giving them the blow by blow. I often tell them that I don't feel well and leave it at that; it makes life easier.
Hi Sjenny, you sure it the nail on the head! The less I tell them, the happier I am.
Take care -
Patze
I am sitting here laughing. You guys, whether intentional or not, have made me laugh at all of this!! How much can we tell this person, and how much does this person want to hear....LOL Isn't it the truth.
You friends are great, and I thank you for all of the support and suggestions. :D Epson, I am in Michigan so we have a pretty long winter.
Sjenny, I know what you mean. I think we all do our own research and then take our findings to the doctor. ::) And Epson, yes, yes, my Dr. said the exact same thing to me. "This vitamin D thing is just the newest craze." Well, I don't think that anyone is suppose to be defficient in ANY vitamin/mineral. And so it goes. It feels so good to be a part of this group. I can see so clearly that when I cannot explain it to anyone, I need to come here and be understood.
Designer
Inevitably, when someone asks me how I'm doing, they'll mention some super dynamic product they're selling that would surely help me. Oh please-- most of that crap make me throw up! Plus, it seems to help them more with their bottom line than it helps my health. And family is the worst!
Hi Designer, just to add my twopence worth.. Ive long had mouth ulcers and sore tongue... Definately ..sweet foods create bacteria, hence mouth ulcers. Try rinsing with salt water, three four times a day , drink and rinse mouth with pure Pineapple juice, and take plain probiotic yoghurt. try to stay off all sweetness till ulcer or sore heals. Always brush mouth and tongue with a soft toothbrush and a good toothpaste from a health shop... Vigilent sterilizing of brushes should be maintained.. having just got Christmas over and all the indulging, I have had some bother but the above regime helps me get over it quite quickly. when I get a stubborn attack I buy "Adcortyl in Orabase", It's excellent. Hope you can buy it in the USA tho'! Best Wishes Dolly.