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bkm0117
04-15-2011, 12:03 PM
Hello,

My name is Brenda and I was just diagnosed with Lupus and Sjogrens the beginning of April. Not sure which is worse yet, if there is such a thing. I am so glad to find a site where I can learn more and have a voice. Sometimes people just don't understand because you don't look sick. At least here it's a community of everyone that understands. Anyway, thank you for this site and I look forward to learning all I can and meeting new people.

Brenda

craftkeeper
04-15-2011, 03:05 PM
Hi Brenda and welcome to WHL. This is a wonderful and caring group of people who really have alot of information to share. I myself have only been diagnosed since Feb and really have learned alot here and i'm sure it will be helpful to you also.

Hugs
Sheila

tgal
04-15-2011, 04:29 PM
Hi Brenda! Although I am sorry for your diagnosis I am really glad that you have joined the WHL Family! Many of us have what is called "overlapping diseases" meaning that once the immune system starts going crazy often times we will get more than 1 illness. I understand what you mean about not knowing which is worse. Sometimes you can't tell where one ends and the next one begins!

I look forward to getting to know you! Feel free to post on any thread or start new ones if you wish!

~LUVMYFLOWERS~
04-16-2011, 04:48 AM
Hi Brenda, And welcome to WHL! So glad to have you here. And yes I also know about people and family that just dont understand just becuse we dont look sick. There are a lot of wonderfull
and careing people here, and load's of information.
Hope you have a good day! ~Diane~

lacey50
04-16-2011, 04:37 PM
Hi Brenda and welcome. I think that you will find this site very informative. Here you are never alone, everyone understands what you are going through. Isn't it great not to look sick...makes me wonder, "what does Sick look like".

bunny28
04-16-2011, 05:13 PM
Welcome Brenda - I am fairly new to my diagnosis SLE and to this site too. It is a very welcoming site with lots of good info. Are you on any meds yet? I was diagnosed Feb1st and started Plaquenil then...I am just starting to feel a difference from it now and I can see just how far my fatigue had taken me before it. Welcome and take care... In my perspective; it is hard to hear a diagnosis in some ways and a relief to know in others...at least we have a community to talk to now who truly understands. Again, take care!

Saysusie
04-16-2011, 09:02 PM
Hello and Welcome Brenda;
I am so glad that you found us and that you decided to join our family here. You are right, this is the place to be if you want to learn as much as you can about Lupus and how it affects you (as well as one of its overlapping diseases - Sjogren's). You will find that there are many members here who suffer from both, just as you do. As such, you will find lots of information about each illness, their treatments, and how our members manage them both.
The people here are very kind, comforting, understanding, informative, and supportive. You will find that there is always someone here when you are in need. Again...welcome!!

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
04-18-2011, 03:31 PM
Hello,

My name is Brenda and I was just diagnosed with Lupus and Sjogrens the beginning of April. Not sure which is worse yet, if there is such a thing. I am so glad to find a site where I can learn more and have a voice. Sometimes people just don't understand because you don't look sick. At least here it's a community of everyone that understands. Anyway, thank you for this site and I look forward to learning all I can and meeting new people.

BrendaHello Brenda,
Welcome to our lovely family of the WHL and i hope you learn alot from us besides the threads helping and you've hit the nail on the head refering ignorant people who have'nt got it (we're the walking healthy) it gets my temper up.

I have Lupus like yourself and many more listed under my name and also the sjogren's disease, refering the lupus it's all according what you may have connected with it, if they have to run furthur blood tests and having Lupus it makes the bloods fluctuate bad so half the time it never gives proper readings.
Refering the sjogren's that starts interfering with the muscle in your face first, you make wake up or feel through the day no sensation on one side of the face and it feels like a stroke usually but it's not it makes the muscles's give off a paralysed feeling and according to how it progresses it starts from the face and goes down the body. It causes your main gullet to actually dry out, so drink loads of fluids to help, it gives me the bile bad also and watch eating meat and hard foods, if i eat meat off a sunday dinner it pains me going down but if it's been cooked in sauce well then it slides down.

There's many member's on here with the sjogren's and if marla gets intouch she'll attach a link, i'm with a medical service where i find my info besides doctor's that do want to help.

I do hope you have a good Rheumo and keep we updated please.

~Hugs Terri~ xxx

bkm0117
04-18-2011, 09:06 PM
Thank you all for making me feel so welcome. It is an awesome thing to know there is such a support system. I forgot I also have psoriasis because I had that way before Lupus and Sjogrens. I keep forgetting they all have something to do with one another. I am taking prednisone and methotrexate. Not sure if the stuff is working but I know for a couple of days after the methotrexate I feel like doo doo. I have been having indigestion a lot lately even when I don't eat. Not sure if that is associated to all this. Also, last night I had this horrible pain under my right ribs. I have been tested a couple of times for gall bladder problems but it always comes back negative. I am still not sure about my Rhuemie Dr though. Unfortunately, it doesn't seem that there are many of these specialists to choose from out there.

I am not sure what "sick" is supposed to look like I just know that people say "Wow you don't look sick" I think I should respond what exactly does it look like? I think it's just because these diseases are not discussed as much as others or people are not as aware. I know I had never heard of Sjogrens until diagnosed.

Again, thank you all so very much for your welcoming me and your kind spirit. It does make a person feel better emotionally!!!

Saysusie
04-18-2011, 10:34 PM
I am not sure what "sick" is supposed to look like I just know that people say "Wow you don't look sick" I think I should respond what exactly does it look like? I think it's just because these diseases are not discussed as much as others or people are not as aware. I know I had never heard of Sjogrens until diagnosed.


Hi BKM0117:
That statement is like the bane of our existence. I cannot tell you how many of us have had to hear it and how many times we are confronted with it. So, as you mentioned, if we don't look sick, then we must not be sick. How sick is that? There has been a lot of discussion here about how to respond to that statement and they range from curt replies to a downright slap in the face :-) There is an entire website devoted to that statement - www.butyoudontlooksick.com In this website, you will find "The Spoon Theory". Many of us have used this spoon theory to help our friends and loved-ones understand how this disease affects us, even though we don't look sick! Perhaps you can browse the website and see if the spoon theory might be helpful to you also.
Methotrexate is a drug originally used for cancer patients. Although the dosage for Lupus is much lower than that for cancer patients, the drug still can make you feel sick for a day or two after taking it. Many people schedule their weekly doses on a day when they have nothing else to do or nowhere to go so that they can rest afterwards. Many find that, after the nausea subsides, the Methotrexate does make them feel better. Prednisone is usually a pretty fast working drug and you can generally feel a bit better within days. If you've just began taking both drugs, you may have to give them a bit of time before you look for truly noticeable improvement. For most, the combination of Prednisone and Methotrexate works well.
Are you not taking anything for the pain, such as NSAIDs (Non-Steroidal Anti-Inflammatory Drugs)? If so, what are you taking?
The pain under your ribs could be a part of your digestion issues. These issues are, unfortunately, quite common for many of us who suffer with Lupus. We tend to suffer from problems in any area of the GI system, including the surrounding organs such as the liver, the pancreas, the bile ducts, and the gallbladder. Not all of these problems will be directly related to lupus; some may be traced to side effects of medication you take or other diseases that may be present/overlapping with Lupus.Some of the symptoms you may experience include nausea, vomiting, diarrhea, or constipation. Often these symptoms can be caused by the drugs you take for lupus, such as non-steroidal anti-inflammatory drugs (NSAIDs) and corti-costeroids (Prednisone). Sometimes, though, these symptoms occur because your muscles are not properly moving waste through your intestines. This group of symptoms is known as irritable bowel syndrome (IBS), and may be caused by irregularities in your nervous system (many of us suffer with IBS).
Your doctor should be willing to test for all of these possibilities in order to determine exactly what is causing your pain so that appropriate treatment can be started. Since Lupus is a Systemic disease, this means that it can affect every part of your body, including your organs, tissues, skin, muscles, nerves, vessels, and your brain. Therefore, no pain or discomfort, or symptom should be dismissed or ignored!
I hope that this has been helpful and I wish you the very best. Please let us know if you are able to get your doctor to address your issues and what is decided.


Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
04-20-2011, 07:42 AM
Thank you all for making me feel so welcome. It is an awesome thing to know there is such a support system. I forgot I also have psoriasis because I had that way before Lupus and Sjogrens. I keep forgetting they all have something to do with one another. I am taking prednisone and methotrexate. Not sure if the stuff is working but I know for a couple of days after the methotrexate I feel like doo doo. I have been having indigestion a lot lately even when I don't eat. Not sure if that is associated to all this. Also, last night I had this horrible pain under my right ribs. I have been tested a couple of times for gall bladder problems but it always comes back negative. I am still not sure about my Rhuemie Dr though. Unfortunately, it doesn't seem that there are many of these specialists to choose from out there.

I am not sure what "sick" is supposed to look like I just know that people say "Wow you don't look sick" I think I should respond what exactly does it look like? I think it's just because these diseases are not discussed as much as others or people are not as aware. I know I had never heard of Sjogrens until diagnosed.

Again, thank you all so very much for your welcoming me and your kind spirit. It does make a person feel better emotionally!!!
Hello Brenda,

It was the best thing when i joined a while ago, i thought i was going out my head besides having my hubby to chat to.
I have psoriasis like yourself and that's such a pain and the skin trouble is terrible my dermatologist puts me on steriod cream which is excellent then gives me a break as it can age you but now the summer as arrived my feet start weeping ontop and i have to use steroid plasters for it to heal, try to avoid as much sun as possible as your skin burns quickly plus it triggers flares such as rashes and always where a 50 block when out and i do recommend shade.
Brenda the indigestion comes from the sjogren's disease and can be worse if the lupus is working hard in your system with it, i also get the bile besides for ages and where your having pain under your right rib i'm getting it bad with the left and i've got to have a scan soon to see what's going on besides checking my gallbladder, i was diagnosed with having IBS but the meds did'nt suite me plus the pains gone past that, so my GP is getting me checked.
We seem to be in the same boat refering rheumo specialist's mines no good either but what i can't get from him my dermo doctor helps more.

I'd never heard of any of mine till diagnosed refering to do with the Lupus but i do have seizure's, i've had strokes and also DVT which Lupus can also cause besides these symptoms coming on people naturally.

I hope your much better today and i always say this we're never 100% but it's nice when a member gets a day when it's not so hard.

Hugs Terri xxx

bkm0117
04-23-2011, 08:01 PM
Saysusie,

Thank you for the website you referred me to. That is awesome. I think this will also help my family a bit to understand that even though the outside looks good, the inside is hurting. The drugs I am taking do help somewhat but I think the Sjogrens is really bad. The dr did not give my anything for pain but just told me to take Aleve. I have an appt in a week with the dr's assistant and I will tell her the things I have had going on the past couple of weeks. I have been off of work for 2months and right now the fatigue and my feet hurting so bad I don't see me being able to go back just yet. That will be interesting to see if the dr will put me out for a bit longer.


Thank you so much for your help and your words of encouragement. It really does help to have someone that understands. I hope that I can pay it forward soon to someone that is new like me.

All the best,

Brenda

bkm0117
04-23-2011, 08:12 PM
Hello Terri,

Thank you for taking the time to write. I see by your diagnosed section you have quite a list. Were all those diagnosed at once or were they diagnosed as new symptoms arose? I seem to be having something new all the time. The other day my nose kept bleeding and now my feet hurt so bad some days it's hard to walk. I hate telling anyone that something hurts because the look on their face is now what. I chalk it up to them not understanding.

I am sorry that you have had a hard road and I hope you have peace and good days ahead.

Thank you again for taking the time to talk with me.

Brenda

gringa1
04-23-2011, 11:31 PM
Hi Brenda and welcome. Like you I was diagnosed 9mo ago with lupus, I am anemic,carry the sickle cell trait, and have fibro. What I found interesting is what you said about your feet, I have been experiencing pain,tingly,and moister on my feet. By the end of my work day I feel like I can't walk sometimes. I kept buying different shoes thinking that was my problem,is this sjogrens or the lupus. And now my vision has gotten pretty bad, I saw my optometrist today and she said my eyes are very dry, very serious. I told her I'm using Blink gel drops, and she recommends I see my M.D. to start me on restasis and continue with the Blink drops. I asked her if this could be the start of sjogrens, she said yes possibly, is this correct? I also started on Radnitidine for my nausea. I'm having flares at this time, I will be calling my rheumy to get started with plaquenil.
Like you my rheumy doesn't give my info to go by, everything I'm learning is coming from these wonderful people here.
Best to to you.... bertie

Peridot20_Gem
04-24-2011, 10:03 AM
Hello Terri,

Thank you for taking the time to write. I see by your diagnosed section you have quite a list. Were all those diagnosed at once or were they diagnosed as new symptoms arose? I seem to be having something new all the time. The other day my nose kept bleeding and now my feet hurt so bad some days it's hard to walk. I hate telling anyone that something hurts because the look on their face is now what. I chalk it up to them not understanding.

I am sorry that you have had a hard road and I hope you have peace and good days ahead.

Thank you again for taking the time to talk with me.

BrendaHi Brenda,

Your welcome and that's what we're all here for to help one another.
How my symptoms came about i had a bad rash covering my body which was identical to ringworm but flat surfaced but was still treated for it, so my GP sent me to a Dermo who said it was eczema and took bloods and when i saw him again i was in a right state with my hands with sores, cuts and my face was sore on my nose and mouth, he said i had inheditery psoriasis but no anaemia was showing and looked at the rest of me and told me i had Raynauds Disease and wanted to start me straight away on presidone but when he checked it counter reacts with my tegretol, he refered me onto his client in Rheumo he did 9 bloods, then 12 bloods and i had to go in the day unit for the day i was in so much pain x-rays was done and a furthur 11 bloods and a letter was sent to my GP stating what i have below except for the anaemia, it took 6mths for a correct reading to come out because of the Lupus making the bloods fluctuate and was giving a negative reading on the anaemia and now i take folic acid tablets and B12 Jabs for life and the last time i went i saw the blood specialist and he said i don't need wulfrin at the moment as i have no clotting as i've had DVT in the past but next time i go a DNA test is to be done.

All this hit me going on for 4yrs ago and when they ran the tests and with symptoms from my past, they told me i was born with it but i started feeling affects from 5yrs of age.

Brenda i don't like to put anyone on a downer but mines all come hard on me in the last 3yrs mainly and there's not a day go by where i'm not waking with something or another.

The nose bleeds are off the Lupus i've had it regular for years but lately it's down my left side so i've been looking it up apparentley Lupus can cause nose bleeds and my feet hurt like yours but the raynauds does'nt help and the only shoes i live in are slip on flat ones.

No one knows the actual situation we're in only the people who have it and that does rile me up.

I really do hope you've had a better day today and you've also had a nice Easter.

Love Terri xxx