I'm new to Sjorgen's

[Cndlgrl]

Hi all! I've been peeking around the forums for a couple of weeks and figure I should introduce myself. I'm 42 and a mother of 5 boys ranging in age from 5-20. I have been t2 diabetic for 5 years. I had thyroid surgery 8 years ago for a goiter that grew during my pregnancy. Within a month of that I also had my gallbladder removed. Blood work a few weeks ago showed a positive ANA and a positive ss-b. I have very dry eyes and dry mouth along with extreme fatigue. I'm also anemic. I don't see the rheumatologist until April 13th. My primary care physician is an internist and basically says I do have Sjorgen's and she's sending me to the rheumatologist so that I can have care of a specialist. I'm in the very beginning stages of this and just trying to wrap my head around having another autoimmune disease. I'm thankful that I found this forum so that there are people who I can talk to about how I'm feeling and I can learn more about this disease and how if effects each person. Thanks!

[finallyadx]

Hello and welcome.  Glad you found us, but sorry you now have yet anther diagnosis to add to your list.

You will find members here who are supportive, kind and informative.

Before I started with prescription medications for dry eyes I used refresh eye drops over the counter and I also use Biotene Dry Mouth products but I have started taking evoxac as well which is a prescription for dry mouth - it has made a huge difference in my life.

I take plaquenil for aches and pains and fatigue - it took about six months to kick in totally for me but has helped me to have more good days than without it for sure.

I hope your rheumy is knowledgeable, kind and supportive and can offer you a treatment plan that will help to relieve some of your symptoms.

Keep us posted.

Sending positive thoughts your way.

[BKreader]

Welcome! I am sorry you have been diagnosed with this disease. It can be a lot to wrap your head around and after 2 years I still working on it. Hopefully, you will get in with a good proactive Rheumy. There are a number of medications that's can greatly improve your quality of life. Plaquenil was life changing for me. As you will read in this forum, Sjogren's can affect each individual differently. There is lot of good advice and experience to be gleaned here. Don't hesitate to ask anything. Good luck to you.

[Carolina]

Oh dearest Candygirl....welcome welcome.

Imagine 5 boys!  How wonderful.  And your health problems are serious and I think that your Sjogren's will be manageable once you determine what medications will help you.  I, too, am anemic, and the anemia isn't related to any 'condition' but is also constant, so I take iron twice a day.  Anemia itself can cause extreme exhaustion unless treated. 

I guess you are treating your thyroid, and your diabetes, so you are already managing several conditions.  One more will be a challenge but you will be up to it.

The key is to be informed, to make a good list of your questions and issues, and evaluating your doctor while he/she is evaluating you.

And bring your questions and concerns here because there are so many members here who have both knowledge and experience to hep you.

Welcome again,

Hugs,  Elaine

[Cndlgrl]

Thank you for the kind welcome! Reading your responses is the first that I've felt that someone "gets" what's going on. I haven't really felt like I could discuss this with anyone including my husband. I just kind of don't know quite what to say. I guess that's because I'm still figuring out how I feel about it and what exactly it means for me. My husband has also been traveling a lot for work and we haven't had much time to talk since this all came up. He told me last night he has no idea what this really is but it sounds like it's not anything too bad. I asked him if he's had a chance to look it up and read about it and he said no. I guess it will just take time for both of us to learn and educate ourselves. I guess my biggest fear is that my quality of life will slowly deteriorate. My greatest wish is just to have the energy to be out living life and having a positive impact on those around me. I don't want to feel rundown and like I can't do anything. I'm so glad I found this forum for support. Again, thank you for the warm welcome.

[A66eyroad]

It's hard to talk to other about something that affects us so personally yet is invisible from the outside. That's why I want to recommend that you read The Spoon Theory --- maybe even print it out and show it to your husband. This is what gave my husband (who is VERY concrete and needs visual explanations) an idea of what it's like to be me. I hope this helps!

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

[BKreader]

I had a difficult time getting my husband to understand. He is very busy running a business and often works late. We have 3 small children and our lives are quite busy. At times, I can tell he's been frustrated with the endless list of health issues. The medical bills and monthly medication cost have been a huge source of stress. I don't think he read any of the Sjogren's information I asked him to. He keeps trying to find simple explanations for my issues. He won't admit it but I am sure he has thought of me as a hypochondriac more than a few times. I finally convinced him to go with me to my Rheumy appointment last week. At first, he said he was too busy. Then, "I believe that you have something serious going on but why do I need to be there." So I had to get sneaky. I told him it's not uncommon to bring another person. His mom does this for his dad all of the time. I needed him to be my advocate & to listen to the doctor without bias. I knew this would be an important appointment. I explained that maybe I don't always hear everything because I am biased and only hear what I want to. There is often a lot of information being conveyed at these appointments. I needed him to be sure my questions were answered and he needed to ask questions I didn't think about. Well, that seemed to convince him to go.

My fantastic Rheumy spent an hour with us. (Who does that?) She clearly went over my change in diagnosis and reviewed my labs and health history (some of which I'd totally forgotten about). She explained "flares" to him and what to expect. He asked questions and took it all in. He gets it now!  Getting him on board was the best thing I could do for my health. I think men are more apt to listen to the doctor than their own wives. You may want to see if your husband can go to your next appointment. It can't hurt to try. Good luck!

[cccourt1942]

Cnd:  With your health history (talking about in addition to SjS) I would be overwhelmed.  PLUS not only a five year old..but four others!  What a woman!  The strength you have exhibited getting through all that will work to your advantage:  you will learn how to manage SjS.  btw:  if you have questions...or you want to scream...THIS is the place.  The forum is filled with well informed and caring members willing to share and share regularly.  (and allow screaming.)

And yes. Your internist is correct in the dx.  He is right to get you under the care of the rheumy.  Think of the rheumatologist as the titular head of your medical team.  You won't see him as often as the ones who keep your various symptoms tweaked (unless he's one who does blood tests each quarter--mine doesn't).  Yours shouldn't since you are positive in two of the three indicators.  Also:  I am not a doctor nor a nurse.  I am not even someone with a long history of SjS.  I'm just an old woman with SjS coping like the rest of the members!  So when I make those statements, they are my uneducated opinions!!

It sounds to me like you have a grasp on everything.  Good luck on your journey---and as Bette Davis said:  "Fasten your seat belts; it's gonna be a bumpy ride!"

ALSO: BK's post:  What a testimonial/solution to a situation so many have mentioned.  This is an invisible disease and few want to hear about us or take time to understand what we suffer as we "look fine."  Don't think you will go thru this, but in case you do...she has masterfully handled it in her life! 

[Kathy57]

Welcome!

I enjoyed reading the good advice on this thread and unfortunately I have nothing of further value to add.

Sounds like you have a wonderful internist who diagnosed you!  Impressive.  Not everyone is so lucky.  I think you will see improvement once you get put on the right meds.  You CAN do this.   It will take time to adjust but you will. 

The people here helped me immeasurably.  It's great to speak to people who have gone there before.  Thank God for the Internet!!  Lol

Sorry you find yourself here but if you have to be here .................... This forum is a good place to be.  A light in the darkness.

Keep in touch.

Kathy

[Joe S.]

Welcome. Some of us have posted what we are taking in our signature.

Check for interactions, counter indications, and side effects before taking any medication or supplements.