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Sjogren's Syndrome Support

Today

Hello. My name is Sally. Today is a melancholy day ie: depressed day.

I'm sorry, Sally. I hope tomorrow is a bit brighter for you.

Hi Sally,

You did it, posted a discussion by phone, not an easy task! Not for me anyway!

Welcome to the group! We all understand the frustration and depression that come with chronic illness. We really do get it!

So glad you posted today. We talked a lot just on our pages about your struggle trying to get to a med to help neuropathic pain.

I take Lyrica, and though it has it's side effects, has helped tremendously, my strongest nerve pain is Sciatica in my left leg.

You are taking Gabapentin, right? Any help?

Sally,
So sorry to hear this. We all get these days because we have a challenging illness. Do you have something you can do to help lift your spirits?

((((((((((((((HUGS)))))))))))).............:):):):):)

I should not be so unhappy today. My pain level is very low & my inflation is minimal. Maybe that’s it. I feel good enough to feel sorry for my self. I got off my alternative path to see if I was still sick. Oh hell ya I am. I am on the up swing of what I called “remission”. I am changing this state to “Sjogren’s on pause”. By the way thank you everyone for your supportive comments which is s lot more then you get from doctor office administrators!

Hey Sally,

It's all part of it, we all have our days like that! Sometimes you just have to let it out! It helps to vent to those who go through the same thing. I'm lucky, I guess, I don't have to go through administrators when I see any of my docs!

Sally
I know what you are saying. When I hit those quiet times (which never last long) I may start feeling sorry for myself because I know the good times are temporary. Lol then I feel sorry for myself when I am sick!

It just comes with the territory. Don’t minimize what you are feeling. Vent all you need to.

Thank you all. I’m going back to bed. My “frozen shoulder” is tired.

They say a doc doesn't have to break his own leg to set someone else's but it sure doesn't mean he knows how it feels or what the challenges are for the patient. I'm glad you posted…. we all need a group that gets it.

Sending Hugs!!

I think we all talking(sharing) about the same thing, Compassion.

I believe when you have an illness you have compassion in abundance. This truly is a gift because as humans here on our journey without compassion and wisdom we are not living to our true being. This then brings one to gratitude for what we have gained from our illnesses.

Compassion as we know is not providing the sufferer with the answers but merely sitting along side them and listening, deep listening. That in it self is healing. It's love, the love we all long for.

Sending Sally love and healing energy. :)

Wow Kate. Very well said. Thank you.

Hi Sally

I get those days to. Sending you a big hug and hope the days ahead are much better for you.



purplebutterfly said:

Hi Sally

I get those days to. Sending you a big hug and hope the days ahead are much better for you.

Today I still have Sjogren’s, my symptoms are the same as yesterday. My prognosis of no cure remains. My family continues to love me, tolerate me, support me and do things without me. My friends, what’s left of them, continue to move forward (without me) others check in on me (via text) and yes a few still invite and insist I get out more. Today I feel hopeful. Yesterday I was tearful. Yesterday I was destitute in fear and grieved the whole day. Today I see a great challenge with wonderful lessons in awaiting my embrace. I wonder who I will be tomorrow. Sally


Sally, I have been there and done that! You are not alone. Actually I had my pity party yesterday!

Sending good thoughts and prayers your way.

Judy
purplebutterfly said:

Hi Sally

I get those days to. Sending you a big hug and hope the days ahead are much better for you.

Sally, Isn't it truly amazing how each day brings its own heartache or happiness and even on some days BOTH. All those wonderful people before me have been sympathetic and wise. That's what we do here, lift each other until we can stand alone and then turn and embrace the next person in need. It gives a great sense of peace knowing I can reach out at any moment and get a dose of love and support. We may not be able to improve one another's condition but we can lift them until they are strong enough to stand alone. I am so glad today is better for you!! Hope you find the joy and peace in this weekend. Michelle

Hi Sally

((hugs)) Just try to remember to be kind to yourself.

Hi Sally!

Hope you are feeling better today.

As far as the frozen shoulder I hope you are having physical therapy. I had PT for at two sessions of 6 or 8 visits.

If you live in LA it's the UCLA PT in Westwood. Francis is my therapist.

Regarding the neuropathy--I had accupuncture at the UCLA East West Medicine. They are all medical docs.

I was also advised to take Mag/Ox one tablet a day. It took about a year to be cured of it. I also had aquatic therapy

for about 3 sessions. I started to take yoga and the neuro went away.

I know how you feel--every day I wake up to see if the ailments have gone away. It takes so long to get better.

But my docs always say the symptoms will go away. This was so reassuring!!!

2akl

Hello. Thanks for reply. I am better today. My dark cloud has passed. I appreciate your suggestions. I currently am not in PT. My Reumy/human with modern western medicine degree says I need to take Ganapetin for six weeks 900 mg a night. He also gave me a Cortizone shot. Also PT says they will not touch my arm due to pain level. Go figure.