New rheumy

[Cindy]

I just need to express my feelings since I'm really overwhelmed. I had my new rheumy visit today. She was everything I was expecting, I think the 3 month waiting list was worth it. All my test are negative but I have sjogrens symptoms. At this time I don't consider mine to cause a lot of trouble. I have moderate dry eyes, joint pain, skin burning sensation and problems with my mouth. I have dry mouth every now and then but up to this day my biggest mouth problems is changes in my tongue and tasting. A lot of the food I once loved taste salty and leaves me a burning sensation in tongue and now in mouth too. She says that she highly recommends me a lip biopsy. I really don't one one but I believe my family wont understand by symptoms until they see my diagnosis in writing. The next available appointment to see the oral surgeon is August 2, after first consultation she will schedule the biopsy.Her name is Al-Hashimi in Baylor(Dallas) my rheumy told me that she is really good and that's why it takes time to do get an appointment.  I feel I finally getting a diagnosis and I can finally put a name to all my years of joint pain. I'm 28 and I consider my self a religious person, for years I used to pray every single day that I didn't had an autoimmune disease. Lately,  I don't feel like praying and I know is wrong, I question the why me? I spend a lot of time reading about sjogrens and some times I get scared and cry non stop because I wonder what is going to happen to me in 2,5,10,20 years. The rheumy told me stuff that I know is not true. She said don't worry about sjogrens I have a lot of sjogrens patients and they only have it mild, only one of my patients has it severe. She even told me not to read on the internet too much because most of the cases are severe that next time she sees me she will give a list of websites that will be helpful for me. I'm scared of the future, I want my kids to see that Im strong and that I can handle this with a smile but I cant and I don't know if I will. The reality is I'm scared of not be able to work, I scared I wont be able to be strong for them or for my mom. I know my mom is suffering too. She blames her self for having 2 daughters with autoimmune disorders. My youngest sister (14) has uveitis it was diagnosed 2 years ago and now me. As me, my sister tests are normal so is consider idiopathic . None of of close relatives have autoimmune diseases. Sorry for the long vent I just feel no body understand how hard is for me to accept that Im 28 and that I will have this for the rest of my life.

[Navigator]

I was diagnosed with Hashimotos Thyroiditis when I was 27.  I know it is hard to find out you have a chronic disease at a young age.  I know it is hard to not be in mourning for how you were. But you are here, you seem to have mild symptoms and thank goodness it has been diagnosed so quickly.  SJS is a controllable disease for many and your doctor is right that sometimes the people on the blogs are those with more serious cases.... you need to focus on how you feel and take it one day at a time. Once you are on plaquenil you should come to feel better...and there are drugs to minimize or even eliminate the mouth sores.   

My only advice is to not panic, give this some time and see how you respond to medication, know that your problem is rampant inflammation...so looking into ways to minimize inflammation can help, Baby aspirin, eventually statins, boosting your consumption of cold water fish (i.e. salmon, tuna, cod) and vitamin D ,minimizing stress , are things that many people here do to begin to help.   Sometimes we can not hope for a cure but we can hope for control ...and SJS can many times be controlled.

There are a couple of books on Sjogrens that can be purchased thru this website or that you might be able to find through your library...and the Sjogrens Foundation has a nice website with books as well.  I have met many people your age with SJS as the incidence peaks in the  20s and later in the 50s. 

You sound like you have a fine doctor and that your kids are all fine.  I am very happy for you.  This site is good for general advice and I look forward to hearing how you do.

[DragonflyC]

Great advice, Navigator.

Cindy, I know that all of this is very scary. It's normal to be concerned and afraid. But stress is a trigger for autoimmune diseases, so whatever you can do to manage it will also help keep your illness in check. Worrying can't help, but it could really hurt.

[Cindy]

Thank you for your response. I know a lot of patients are diagnosed very young I know Im not alone. I guess Im very overlwhelmed because my family dont understand how hard this is for me. They are not feeling what Im feeling. My rheumy did told me that I will need professional help to accept my diagnosis and to understand I can live with sjogrens. I love to come here because I know you understand my feelings as you have been in my place and some are new like me trying to adapt to a new life.

[Gayle]

Hi Cindy,

I was 26 when I found out I had something... was 53 when I found out what. We all have kids and or jobs and families to take care of and they all survive. Some of us don't or can't work maybe but many times it is due to multiple disease process' and not just SJS. You will do fine. AND>>> I showed this website to my Rheumatologist last week, she sat there and looked all over for about 13-15 minutes and came away telling me to stay with the wonderful people here and that there was tons of great support and info. So, when you need these lovely people, someone is always ready with a hug, a pep talk or support. You can vent and you will one day be able to help someone who is venting. Your family will be fine and as a parent (especially a mom?) we take all the concerns completely to heart and accept all the 'blame' - there is no blame or fault or anything. Maybe your doctor can one day help your mom with that... Sending a humongous but gentle hug!!!!!!!

[slccom]

Cindy, there are tons of support on here. However, do remember that most of the really active people here are really sick, and their problems are not necessarily anything like what you will experience. Don't read posts and borrow trouble. Just deal with what you have to deal with.

I think the person who really needs to see a therapist is your mother. Seriously. That kind of guilt is so corrosive, and absolutely unjustified.

Glad you found us! Sharon

[mshistory]

Hi Cindy,

I agree with Sharon about trying not to worry about all the what-ifs, especially from this forum. I think Sjogren's really is fairly mild in many people, but most of us on this support site are here because we're in that unlucky 1/3 of people with SjS with extraglandular complications and severe disease. So please vent, seek advice and offer support with us but don't worry about all of these complications we post about because there's a good chance your disease process will be slow and mild too (at least according to all those statistics I've read... about 1/3 of people "only" have sicca symptoms, 1/3 have sicca symptoms and fatigue/joint pain, and the other 1/3 have all of that plus organ involvement... or something like that...)

I'm a mom, and yep, I blame myself for things that I know are not my fault. If my five year old's blood work comes back showing AI activity, I will definitely feel guilty, even though there was nothing I could do about it (I didn't even know I had an AI disease until after both of my children were born!) My husband, who has atopic diseases in his family, felt guilty for a long time about their eczema and allergies... even though we can't do a thing about our genes! It's part of parenting... perhaps you and your mom can attend a couple of therapy sessions together so that she can see you really will be ok and find out ways she can help you - that's the best remedy for mom guilt - doing something that helps our children!