Hi Everyone,
The Primary Sjogren's:
I may have had Primary Sjogren's as a kid joint "growing pains", headaches, many cavities, after school naps... started getting times when I had to nap my 20s but not constant (felt better taking supplements), then my 30s had joint aches that advil would not help, especially wrist pain and dry eyes, and got dx'd mid 30s after leaving work from brain fog and distress from not being "on it". Vasculitis, neuropathy, pernio have shown up. Fatigue with a capital F.
Me:
I am 40 actually and have a husband of 10 yrs. I like rock n roll, the beach (even just looking at the ocean from a car), movies, British mysteries & comedies, stand up comedy, thought provoking talks and documentaries and doggies. Have had kitties but my mister is allergic ;) and maybe the doggies are allergic to kitties too haha j/k I do not have children, but I love children and used to babysit and nanny when I was younger. I am mostly upbeat - but sometimes the PSS gets me down and I mourn my past life. Need to learn to pace myself and not push through my fatigue or I pay for it dearly. Wish I could work or volunteer - but just cannot show up consistently.
Meds:
I take supplements, plaquenil did not work for me, not a candidate for cellcept but maybe rituxin. Considering prednisone again.
Over the counter:
Those eye goggles for night time, wrap around sunglasses, moisture chamber glasses for flares, and eye ointments & non preserved single drops are great. Heat is not my friend. I do not have raynauds, but I do get cold easily and have pernio swelling or blisters.
Supplements:
Multi, B12, fish oil, D3, brown rice protein, herbal teas, keep forgetting my flax seed oil! Open to more supplements and love to read up. Eat far far less processed foods and feel better. Not really tolerant of milk, wheat, coffee or alcohol any longer. Love extra virgin olive oil = Yum!
I like to laugh - even dark humor. I welcome any tips tricks and fun new things and ways to look at life :)
Do you have any similarities to me? Or not... let's share!!!!!!!
Thanks for listening and being here! ;D
Peony
Hi Peony and welcome to Sjogrens World!
Thanks for introducing yourself to us and telling us a little about you...nice to meet you...although I wish it could be under different circumstances! :)
It sure sounds like you have a good sense of how your symptoms affect you and what seems to help or make things worse for you...that is a huge plus!
Read all you can here...and ask any questions that may come up! I hope you find the information, support and friendship here that many of us have found. It's a great place....and its great to know you are not alone in all of this and that others truly do understand!
Nice to meet you, sorry you had to find us! I have not been here for long but love the suggestions I get from here and I feel like one of the gang here.
While I am glad that you found us, I do not like it than 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, and a good sense of humor is good to have with these diseases.
I love doggies too, and have 4 of them, and 1 big ole white kitty who is sitting on my arm as I am trying to type. ;D
susanep :)
Hello Peony,
What a lovely name! ;)
Welcome to the boards and our site. I'm sorry you've had to find us, but thank you for introducing yourself and telling us about yourself.
As said, a sense of humor is essential for managing these diseases, and an optimistic attitude does us wonders.
I'm a bit older than you, at 56, but I understand and relate to the horrible fatigue. Sometimes it just overwhelms me and I must sit, lie down, etc. before I feel I'll fall down. Other times, even in the same day or afternoon, I'll have some energy to go grocery shopping or do some chores around the house. It is hard to know how far to press myself, even after a few years of this, because every day changes :)
All we can do is the best we can, as I see it. I try to feel blessed the times I feel fairly well and strong, and give myself a break when I don't. It sounds as if you're being smart with doing all you can to best manage your symptoms. That's so important.
Again, welcome. Please jump in anywhere and ask anything, comment, and feel free to join in any discussion. We're sort of like a big family here; occasionally we may disagree, but we always encourage and support one another.
Take care,
Melinda
Hi Peony,
Welcome! Enjoyed reading your intro. I take many of the same supplements as you but haven't given up coffee. The beach was my favorite get away and I really really miss spending time there. I have one shihtzu and love documentaries.
You will find lots of helpful information on this board. There are some really nice folks here.
Cdbhappy
Oh my gosh you all are so great! I need to come here more for peer support and Yucks ;) Sometimes I fall into comparing myself with the "well-world" I'm at a 1/3 to 1/4 of my normal life. It feels like house-arrest at times :P
Thank you thank you for all your wonderful words - perhaps I should print it out and put it by my desk ;D
Hi Peony, welcome, but sorry you have to be here.
This is the best place to be if you have Sjogrens or anything AI. We can listen to a good whine and not blink an eye. We don't even give you nonsense back, but listen with sympathy. If one of us doesn't feel like that at one particular time, you can bet someone will.
I'm "older" and we'll leave it at that. Hubby and I were just married 50 years, but I don't think I can be that old--but I must be. I was a teenager when we got married, and he was not a teenager. That makes him older and I never let him forget it, although he is in better shape than I am at 5 years older. Family is small, we have one daughter in her 40's and she is single without kids. We do have a new grand-dog though and when she brings the pup over, Gramp has the most fun.
I was diagnosed in 2007 with SJS, breast cancer 6 months later, and Fibromyalgia a couple of years after that. The cancer is gone and I'm dealing with the other two and many on here have a really hard time. Mine is hard enough, but others have such bad times. We're glad you are here and I like your name. Lucy
Welcome to the board, and as others have said you will always find encouragement here, and a listening, understanding ear.
Everyone is always ready to exchange any information they hear or find that may help someone.
susanep :)
Welcome Peony!
Thank you so much for your support and shares about yourselves - it made my day going back over to this post :)
Totally needed this! ;D
I love the beach and my husband is also allergic to kitties. :(
I am trying to eat less processed food, but when the flares happen it's a lot easier to call for a pizza than drag myself to the grocery store or into the kitchen to cook. I have made homemade chicken broth, though. That makes me feel very domestic.
Haha we have the beach and the kitty allergie men in common :)
Yes the processed food thing is a super challenge at first.
I ended up getting a slow cooker but sometimes I don't even want to chop and drop things in haha
So I've asked the hubby to chop the veg for me and I season and put chicken in ;)
It gives me more energy - I don't know what they put in all the processed stuff but it eats my emergy!
But sometimes I need to pop a can of high quality soup or eat something on crackers on occasion.
Even got a rice cooker (can do many other grains luckily). also trained haha the hubby to make extra food if he cooks dinner - so we have a meal or two extra so we don't have to cook or if he is away I can eat easily. Hope my suggestions help - but I hear you the pizza is so so convenient when we feel badly!!!!!!!
Thanks M for sharing with me :)
P.
Quote from: madderakka on October 23, 2012, 01:10:35 AM
I love the beach and my husband is also allergic to kitties. :(
I am trying to eat less processed food, but when the flares happen it's a lot easier to call for a pizza than drag myself to the grocery store or into the kitchen to cook. I have made homemade chicken broth, though. That makes me feel very domestic.
Thankfully, my husband will cook, but there are times when I haven't made it to the store and there is nothing to cook!
I do like my crockpot. I need to use it more: thanks for the reminder. I just used it last night to make pulled pork sandwiches.
Peony,
I'm glad it helped that you read this thread again, and it brightened your day. :) I think we all need to know we're heard and encouraged.
Madderakka,
Let me welcome you to the forum, too! We're glad you've found us and hope you enjoy your time here.
Melinda