Hi everyone! I've already made a couple of posts and didn't think to do an intro until now. Hopefully that's not rude. I haven't been part of a forum where they did intros.
My name is Trinity. I will be 29 on Nov 3rd. I just moved to southern California after being in the northeast for the past 8 years. I have a nine year old son who has mild autism and keeps me on my toes and answering questions all day long.
I was diagnosed in 2009, but I had been showing symptoms since I was 20, but they were intermittent, so my doctors nor I ever put them together. It was mostly tiredness which was blamed on depression, the dryness was allergies and they just shrugged their shoulders at the swollen gland on my jaw and said sometimes that happened. When it didn't go away I went to an ENT and he sent me to a rheumatologist who told me I have Sjogrens. Since then it has been mostly dry eyes and mouth with occasional flares and swelling in my knee. Honestly, I haven't been as on top of it as I should have been because everyone has just brushed it off as a nuisance disease and tells me to chew gum and use lotion, but the past few months have been a lot worse and I am realizing I need to be more proactive about it.
Hi Trinity!
Welcome though I am sorry you had to find us. ;) It is good you did, as you probably already know there are many very smart, compassionate, shoulder to cry on, people here. Are you taking any medications? I hope your able to find a good rheummy in CA.
Welcome again and keep joining in!
Gayle
Hi! I just saw your post and wanted to say hello.
I don't post much, but I have a 16 year old with aspergers, a 15 year old with dyslexia, and a 12 year old with an attitude. (just kidding on that last) (kinda, lol :)) anyway, you're not alone. I know the challenges, and the joys, that come with kids who see the world differently. Then you add an illness that just zaps your energy, and makes it so you sometimes feel like you're dragging yourself through molasses to get anything done. It can be really hard.(bit of an understatement there!)
I saw your other post too, and I can't tell you how many days I have felt like loser mom, or mom the complete slug, and we homeschool! Where we live I just couldn't find a school that we felt would give our son what he needed,so... But you know what? We're all doing fine. My boys are smart and they help a lot. I thought it was a great idea to get some help from your son, if he's able. It is a lesson for them too, that even Mom can need help sometimes. We've always tried to teach in our house that everyone struggles with something, even if you can't see it. Seeing Mom struggling, I think, helps give them compassion, which can be hard for my oldest! But we muddle through. You sound like a good, caring mom so you'll both be okay. Hang in there and post when you need support. This is a wonderful caring group.
Hi Trinity and welcome to Sjogrens World!
Thanks for telling us a little about yourself...glad you found us and hope you are enjoying reading all of the posts here....lots of information, support, and fun to be found! :)
Welcome,
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Welcome Trinity, and I love your name. I know it must take everything you have with your precious child when you have all this going on yourself. Prayers for you.
susanep :)
Thanks for all the replies!
Gayle, so far I am taking Wellbutrin and Lexapro for depression- may or may not be related to SS. I have had issues with it since childhood. I also take Pilocarpine for dry mouth and a multi-vitamin. Hopefully when I find a rheumy here, we can discuss some supplements and meds that may help.
KatieB, it's nice to have someone that understands the added struggle of a special needs kiddo. We moved from an amazing school district and last school year was a nightmare, but we finally found a good placement for him and he is doing well, thank goodness. Kudos to you for homeschooling. Perspective taking can be hard for my son. He is compassionate, but it easily slips his mind when he wants to do something and I am moving slowly and he has asked when I will be better. He can definitely help out more, though.
Hi, Lynn.
Joe, I have read The Spoon Theory. It does a good job of explaining it to people. My husband has read it as well. Thank you for all the advice.
Susan, thank you. :) It does take a lot out of me, especially right now because I am still getting him settled into the new school district, but he also helps me, too. He gives me lots of smiles gets me motivated to do things. Thank you for the prayers.
Welcome Trinity!
Your child is so lucky to have you :) Alas I do not have children, so I cannot fathom your path day to day. I did nanny a child with mild autism for awhile (he sure was smart and many questions) nap time was challenging so we just rested (I needed the nap frankly heehee) and have babysat two kids at a time on and off in my 20s. And needed naps then too.
The thing I can relate to is moving. recently moved 10-15 minutes away from where I was. But things were closer together there and closer to old friends and now getting to the doc etc takes more effort ;) Nothing like you - you are a super mommy That move and finding a great place for your son! I applaud you - some may think it a normal thing but my friend it is a feat :o
I can gently suggest:
Come on here and learn wonderful things. Sometimes it can be scary *for me* to see what *could* happen with SS but everyone is so different and not all things manifest for every person that happens to have SS. There is a good Doctor in San Diego Dr Fox - he "get's us" I do not live near him nor ever seen him - but maybe you do? http://robertfoxmd.com/index.html
I wonder have you read "Body Out of Balance" yet? It was great read for me. You can peak at go ogle books to see some pages of it. As I realize I had been presenting maybe since I was a kid and a lot made sense. 8)
Wonderful to meet you T.
Peony
I have not read 'Body Out of Balance' yet. I will check it out.
I miss the days of naps, but I guess it balances out since he will go outside and play now.
Thank you for the compliments. I try my best. It was a struggle last year, especially since I dislike having to be assertive. I'd rather say please and have everyone get along. :)
madderakka,
Welcome to the bunch! Your name, Trinity, is lovely, I must say.
No, not rude at all by not putting out an introduction right away. It's not necessary; just something we offer everyone so we know a little about new members, but only if you want to. Anyone new can just start posting away at any time and that is just fine, too. :) Just jump right in, we always say...
I also hope you enjoy your time here. Lots of great and encouraging people, loads of support and understanding. Looking forward to hearing more from you!
Melinda
Hi Trinity and welcome to Sjogren's World from me too! :D
Do look around the board and if ya can't find what you're looking for, don't be shy and ask away as there is usually someone about that just might be able to help.
Patze
Thank you for the welcomes Melinda and Patze. :)