Re: Body Imagine

Hey Pinkcheek,

I am not a physician and don't have any medical advice to give you. But I just want to say that I hope that you are going easy on yourself, not criticizing yourself for the way that you might look right now. You are dealing with a lot, facing incredible challenges. You are a brave, kind, loving and lovable person.

Gary

Oh my yes. If anything a chronic illness teaches one is to be gentle with yourself. However , that being said I am still my toughest critic. Beauty is aninside job.I found out that wearing a smile illumiates my face and others as well .Smile at people you meet today watch what happens.
My educated guess is that you will receive ,at least one back.

Hi Pinkcheek,

Thanks for your reply. I understand what you are saying, we are all hard on ourselves, and we live in a culture that teaches us to be especially self-critical in the looks department. I bet you have a beautiful smile. And you're so right, one smile leads to another in return.

I am sending you a big smile today, my friend!

Gary

thanks ,because today is a day i will need all the smiles I can get. :)

I am sending you lots of hugs and smiles..so hold on to some thing, as I don't want them to knock you over…hahaha wishing you a great day:):):):):):):) Teri

Hi Everyone , What is the longest it has taken for you to recover from a "flare"?

I am sure that it is so different for each person. In my early years, it could be a few weeks. Now that i am 52 and I have been ill since I was a child. I pretty much am in a constant flare, i do become sicker, but I believe that most of that is just caused by the many conditions I have.

I am saying this, cause years ago, they didn't have any where near the treatment or knowledge that they do today. So many are much luckier than us that were diagnosed back before or in the 70's.

So make sure you now, educate yourselves so you can be proactive in your health care. This will help many to have longer remissions.

Make sure when you have any signs that you may be headed for a flare, to stop and think of what you need to do, for yourself. Rest, time off of work, lower stress, have a helper on call, that you can have come in and help with housework, child care, personal assistant that can help with your work, like filing-typing-research etc.

You should have a flare plan, that consistent of a list of what makes you better. like many of the things I have said. You tell your family you are going in to a flare, they should know what that means, and what part they can play in your health. Like helping around the house and some of the other things I mentioned. I would tell my teenagers, that when I am out of a flare their jobs will go back to what they were, they appreciate the fact that they could help, but they didn't have to do so many chores, all the time..

Talk with your doctor. I had a chronic temp 99 to 101 24/7, since I was a child, as soon as my temp would raise, I already had medication on hand, to fight many issues. I knew what to take, like my daily antibiotic 800mgs daily would go to 4 tabs not just one, for 10 days. Vitamins that I would take a higher dose of as well, or only take during a flare.

There can be times a flare would only last a few days, but other times as long as a few months, But i feel strongly that we have to put a plan in order, to help ourselves, when we feel the signs, if you don't think you have any signs, then when you get into your nest flare, look at every thing you did and felt the week or so before, as most of the time there are some kind of sign. One of mine was, that behind my ears, would get sore, then I would feel a lump, and the area would be very tender, then i began to get sores, like a burn that really hurt and took forever to heal, or my temp would rise, joints would hurt worse, swellings, look for these or any kind of change, your blood sugar can raise if Diabetic.

These signs can help you have a plan, even eat better during that time.

I wish you all the best…I hope you all stay out of the horrid flares. I wish I knew the many helpful things I now know that took so long for doctors to figure out.

we can so learn from each other, so keep asking and keep sharing:):) I hope this makes sense, as I have been having some memory difficulties among a few other issues, and I didn't proof read:( so i hope the best:) that I make my statement with the correct words, and such:):) hugs to all..T thanks

Back at the end of 1991, I ended up with massively swollen glands for 3 months that also made me VERY sick! They had me on tons of antibiotics but couldnt figure out what it actually was that was causing it. Now after all these years I know it was the then undiagnosed SLE I have. I couldn't eat, couldnt really drink much. Lost 25lbs the first week between the fever and swelling and how painful it was tho Ive never had it since.

raven2005, I am happy to hear you have not had it sense. I have had a few weird things come and go, that at the time the doctors said, "you may not be able to ever walk again or it may just go away" which at the time was very scary, thank goodness it and many other things got some what better or I got used to another new normal…

This illness is so unpredictable…

I am happy we have each other to keep us sane Lol :):) hope you all have a good week-end Thanks for your comments:) Teri

TERI,I WAS TOLD IWOULD NEVER WALK. HA! I FULLED THEM THANK GOD I AMABLE TOWALK SEVERAL MILES A DAY:) !!!

YOU GO GIRL!!!!!I know what you mean. I don't listen when they say I only have 6 months to a year..I have fooled them before and I will continue too…or we all will:):) Keep being strong!!!!!!

My face swells alot but not my glands…my feet and hands always swell too but they can't seem to find a reason for it…SHOCKER! If it isn't one thing it is another. Guess it comes with the teritory right. Nothing suprises me any more. Maybe that is a good thing maybe not. I am just trying really hard to keep a positive attitude :}

IMAMEANIEBABY, just a few ideas…check them out on line, and write down your symptoms in a daily journal, really helps after you have a month or so to look back on. You can also bring it with you and any notes you take or print outs from on line…

Medication your taking, diabetes, Raynauds Disease, Vasculitis these cause swelling among other things, look them up. Also infection, sinuses, deep throat, Esophagus issues, Stomach issues(have an endoscope done GI specialist) Sjogrens tested by a eye doctor or ENT specialist) all these can cause a lot of serious problems so you want to see if you have any so you can begin treatment & the testing are not to bad..just some ideas to work on, as I always say, we have to do all the research for ourselves & I guess that is just how it is for now, but we can save our own lives:):) good luck to you…hugs Teri

Thanks so much for all of your ideas! You are so right when you say we have to do the research ourselves…if we don't take care of us who will right :} I am actually scheduled to have a colonoscopy and endoscopy this month. So we shall see. I am also getting an Mri and and eye exam. I get the eye exam every year cause of the plaquenil. A journal is a great idea! I am going to try it. Thanks again! Hope you are having a good day! xoAngell xo

Hi I am going through yet again another workup. I have tohave a spinal tap.Yikes I am scared!

Pink
I will be praying for you. The unknown is always scary. Just think whe it's over you can have a nice big sundae or your favorite dessert. Yum :} Good luck hun!

Well said…I send a good luck as well to you…hugs

yOUR AWESOME THANK-YOU!

OH YOU CAN BE SURE I WILL DO SOMETHING NICE FOR ME…:)

Your so strong, it will be over in no time, I hope they find some thing small that can be treated and you feel better:) hugs Teri

I know me too. I have leared ,beauty is an inside job. It is interesting that others still see a beautiful woman. Hey we all must be something right!!!!! Yea for us :) llol

We are some kick a$$ ladies, look what we go through and we raise fantastic children, carry on great careers and we deal with such pain and difficulties within our daily lives, just getting up and getting ready for our day's…

Be proud of who we are and with this forum we can change the way Lupus is diagnosed and treated as well as the many secondary conditions we all have.

By us sharing we are documenting so many different types of medical information, we will be the ones that make the most difference in the Lupus field then many doctors will…keep talking so I can keep learning…

Thank you so much ladies and also the few men that are here I don't want to forget anyone.:):) love Teri

When my neck swells up it usually means that I need to have my esophagus stretched…when it is noticeable I am usually vomitting, having to swallow everything with water and getting dry hiccups. Dr. says it is the Sjogrens acting up..what doesn't act up, lol??? Oh well, when I have the surgery I at least get a good couple of days sleep…not acting up now but the other stuff is.

I have to get my esophagus stretched periodically too. You are the first person I know who had had to have this done! My neck does not swell up though.

I just had the same surgery not to long ago. It sucks…Boy do i get it… Teri

I have had swollen glands, and I mean swollen ever since i was a teen. I had a low grade temp 99 to 101 24/7 everyday.

But about 7 years ago, I have no temp, well I mean my temp is 24/7 now just below normal. Even when I was in the hospital with a brain infection, the doctor said my temp should be high, even to 104 to 105 due to how sick i was and it was 96.8 and no one really no's why. every doc I have asked has never seen that before and i haven't found any thing on line.

I have Sjogrens so mu saliva grands also swell. I had to have one large on removed under my left cheek. They can be very painful as well.

I now have all my glands, the pea size ones. Under and around my armpit, down my inter thighs, all around my neck, my chest area. they also hurt. I am not sure what they all mean. I am having a mammogram on the 12th as the ones around my breasts ans down my sides, doc said worried about breast issues..breast issues, like breast cancer. I say NO to that.

But I would like to know why they are all swollen, for the past year or so.

My neck looks so lumpy others find themselves the need to point that out to me, like did you know your neck is all lumpy, I like to say,(It is??) and look so shocked and thanking them for letting you know, you know the ones at the Safeway check out line, they go away thinking they have helped me, and I like that :):)..

I think the large gland swelling goes with Chronic Systemic illnesses. as we are always sick with some thing, so our glands are working over time. I just wish they would take a rest. I would look a bit better, and I don't think they know they are not helping, but I don't want to bum my glands out and tell them, so I don't say anything to them…I can be a nice person…haha lol Teri

Do you ever feel like everything is going well and wham, some new strange thing happens?

Absolutely, even if i feel a little bit better some thing new, or have a surgery to repair one thing, and like you said WHAM I get nailed with a new diagnoses. or some thing…lol Teri

Hi Terri, My glands swell and it comes and goes. I thought it was my teeth no such luck. You are right we are consistently fighting ,INVADERS. I feel a great connection to you.

I do as well…talk soon my friend Teri

lol sometimes chipmunk is a under statement ,,when I get large amounts of steriods ,,its more like a umpa lumpa! lol we say grandma has her sexy going on ! and what a great dentist you have…

Oh yea I'm with you there, I've been on some sort of dose of steroids everyday for 10 years now. AS the dose goes up so does the moon face and the buffalos hump on my back and I no longer have a waist definition either. Its so lovely .

Yes I am but I laugh now because I am Italian and everyone thinks I look GOOD!!!!

No…the physical aspects seem to never end do they :-(
Are you having that now?

Yes,and my dentist said I should see a rheumologist…lol

Gee, how helpful.Has this happened to you before?

Oh the glands yes.. the dentist saying I need a rheumatologist ,this is a first. lol

Often our oral health has a lot to do with every other kind of health problem we are experiencing. I have found you really need to tell every kind of doctor, if it is Dental, eye, stomach, colon, throat, sinuses, all kinds of doctors needs to know about all your medical even if it doesn't seem to be connected. They may not even think they are, but at some time, it may all come together to one of them.

You can have facial pain, ears, swelling any where and every where, changes in skin color like Blueish, blackish, white areas, red, bright red w/heat, cold hands & feet and other areas (very important) Sores no matter where they are, pain even in strange places w/out or with a cause you can think of right off, your hair changes, you finger and toe nail changes, rashes, hives and just plain old redness. You temp daily..skin changes of any kind. Dry skin, dry eyes dry mouth, can be very serious.

We so often get where there is always things going on and have had doctors just give us the brush off. So we become a bit afraid to tell some one. make them listen make sure you tell them with your "tough mommy voice" not your "quite in a office voice" as they often lump every thing and concern we have in to the "Lupus complaints" and they can be some thing little that can be fixed right up or some thing that will continue to damage areas of our bodies, as they are not being treated.

So be our own advocates and make sure you have them listen and do the testing if needed.

Do a daily journal and write down all the strange things coming and going on with you and your bodies.

Then you can see a pattern and then you look them up on line, we have to do a lot of research our selves, yes it su$$'s but we have all found that we have to or we will not be heard or treated.

I email my medical team & they email me, which is great. but if you can't, mail in a list of things that pertain to that doctor visit, but then list the things you don't think are tided together, because you will be surprised what is tided together and what is not.

Swollen Gland can mean a lot so ALWAYS make sure the doctor checks them out and documents that you have them and every where that you have them. There are many more glands then the ones in our neck. look them up on line, see if there are ones you haven't checked, as they all mean some thing different. thanks for listening…

Good luck everyone, just some ideas…your friends Teri

Hi Ter,
I agree with you. Guess what my Dentist ,has been more on top of this than some of my other doctors. How does your significant other deal with your illness?

Pinkcheek57, I have had my dentist do a lot, even wrote a letter to help with testing I felt i needed, and to say so myself…ha!! I was right…I don't often get to say "I am right" so I am going to say it more than once…lol haha

My dermatologist diagnosed me 100 years ago, so that was my point.:) thanks for listening…

Pinkcheek57 I really want to reply to how my significant other does or often doesn't deal with my illnesses & how I deal with it. But I am just getting going this morning and the words just don't seem to flow from my mouth on to my fingers, as well as they should..lol So I will and want to reply, latter today…

Have a great day, my new found friend…hugs back at you…Teri

Hey Teri and all. I have had swollen glands to the point of them being obvious but I have recurring swelling of my throat. Another mouth problem with the Sjrogens is I could never keep a filling in my teeth. They would fall out after about 6 months. I finally had all pulled because in this town rotten teeth equated with using Crank. And even on steroids I only weigh 120 lbs. It was one of the best decisions I have ever made. I feel better about my looks now
Love and very soft hugs to all
Jeanne

I had the same problem, my teeth were gray, at the time they didn't know why, but it was due to all the antibiotics I took pre-teen & teen years, that effected my teeth, as i guess they get their strength and some of the whiteness in those years, & antibiotics prevented that for my teeth.

Our town is the same, rotten or bad looking teeth like i had "Crack Mouth" i never wanted anyone to think that, even a new dentist would look at you strangely, until they would read your file from the last dentist.

But I still have so much oral problems I can't wear my dentures:( but I still need some surgery done on my lower gums and jaw, but no dentist wants to do it, and my medical wont cover the surgery by a doctor, still trying to fight that…

If any one knows how to help with dental/medical and how to get surgery paid, please do tell:):) thanks everyone…

We are wonder women & don't forget it …love you all, thanks for all the comments and posts, we all learn and get classifications as well…Teri

Saying a prayer that someone has an answer for you…Jeanne

I will continue to pray for you as well. We have to stick together, as I know the help many of us are looking for his right here…

I have learned a lot from everyone and I hope I have given a few ideas that may of helped someone myself…

I hope someone may have an idea, to help me get this darn surgery I need, or prayers are answered for my insurance to pay for the expensive surgery.

I know many others have insurance problems, as well. maybe a person with Lupus that has or does work at a insurance company may be brought to help give us some advice lol but would be wonderful…

Hugs to all and Jeanne K love ya Teri