I am finding it harder and harder to be positive. When I finally got the diagnosis of Sjogrens, I thought , "ALRIGHT, FINALLY" little did I know what it came with. I am currently fighting a flair up of swelling in my glands, from ear to ear. This comes with constant pain and the sensation of someone with their hand around your throat. I have to sleep sitting up for fear the swelling will get worse. The meds for the swelling make me have MAJOR indigestion so bad that I don't want to eat, and top it all off....$5000 worth of dental work due to Sjogrens. Did I mention I DON'T have dental insurance. I know there are many people that are sicker than I am, and I feel so guilty talking about this to anyone, but I am just sick of being sick. I feel soooo betrayed by my body. When did I become my own worse enemy??
Do not worry about who is sicker. Take care of yourself the best you can. I do not remember if I sent you my standard greeting but her it is.
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.
sick is sick. There's no reason to feel like you aren't suffering enough to be sick. It can keep you from work, it can keep you from being able to care outwardly, it can keep you from relationships. It sucks. There's no getting around it.
Sorry you're having such trouble w/it. It truly is chronic and painful. I hope you get to feeling better soon. Hug, hug, hug.
I am sorry you are feeling so bad and I know it is hard to stay positive at times.
I just want to say that you might want to get another opinion about the 5K in dental work. I find dentists have very different ideas about what needs to be done. Last year the female dentist where I go told me that I would need new crowns on a couple of teeth. I didn't get it done because I couldn't afford it and I do have a dental plan. This year a new female dentist told me that I only needed 500.00. to cover some areas where my gums are receeding, and told me that she didn't see where I needed crowns on the teeth the other dentist told me that I did. It never hurts to check.
SueAnn
SueAnn, you are so right. I had a "dentist" tell me I needed $4,000 in dental work. He said, "I'm full of bad news," and I thought, "That's not all you are full of!" and marched down the street to another dentist who did the work for $400.
I would add that you should get the book, "When Bad Things Happen to Good People." It is old, and immensely valuable.
Just because others have worse things happen to them doesn't invalidate your own suffering.
I hope you feel much, much better very soon!
Also Hugs, Sharon
Thank you everyone for your advice and kind words. I feel like this site is truly the only place ok for me to say how I REALLY am feeling. Don't get me wrong, I have a wonderful husband, kids, family, but I feel like I am a pain to them, with all my pains. lol I feel really blessed to have people who I haven't met, so supportive. Thanks so much. p.s. today is feeling like a better day!