One year ago Nov 22, 2010 my ophtalmologist rang an alarm bell for Sjogren´s - It was a surprise - bitter one indeed - all I wanted were new glasses cuz I couldnt see well and I got an atomic bomb instead :´( - That was my REAL diagnosis - Funny thing is about 3 months before that I had resolved to be a healthy person and had decided to stop going to doctors and pharmacies - no more meds for me attitude - Im healthy Im OK ! - also began to grow my hair cuz I resolved to stop pulling it with the Hands Down a Thon by TLC during September - It grew back - but the anxiety due to knowing I had to have myself checked by a rheumatologist made me pull all of it out between January and February - I got my official diagnosis in March 2011 :´( - Im sad for all of the things that happen in my life since a long time ago -no health - no hair - no mental health- no partner - - no family - no kids - All I got is myself and my dog - Myself !
Virgi,
One year is still a short time in your journey with Sjogren's. It takes us all different lengths of time to deal with a diagnosis this difficult. I think I'm always a "work in progress."
I'm sorry that you sound so alone. I'm not sure how much comfort it is to you, but there are many friends here who care about you. It's part of what is so great about this place; we can vent, cry out, share our good news and our bad news, and know that others understand.
I'm not meaning to assume I know all about you, I just want you to know that you're not alone, not here. ;)
Sending you a hug.
Melinda
2 years ago I was eating what I wanted ... drinking coffee ... going on family vacations ... thinking clearly without brain fog ... generally 'up' about life .... had my faith in a loving God intact ... getting chores done around the house in a snap ... planning for a dream trip for our 25th wedding anniversary in a few years ... had friends I thought who were solid ... was working with preschoolers ... was volunteering ...
And now it's just the opposite. I know it could be worse.
But honestly, life's a whole lot worse than it was two years ago.
(if anyone says it's not 'worse' .. only different .. I'll cyber slap them!!)
I don't want to sound trite, but a positive attitude can work wonders. Every morning I choose to have a good day. Sure, I have set backs, but I refuse to live my life by the negatives.
Sometimes I scare myself at work. Brain fog. I miss obvious things. This is a bad thing when you are doing payroll! I just fix the error and go on.
I am getting ready to go on my first singles cruise. There are some things I will not be able to do. No tours that require a lot of walking, no major drinking parties (which isn't a problem as I don't have to drink to have fun), and I am sure I will be tired and be the first one to head off to bed in the evening. But....I plan to relax, make new friends, and totally enjoy a week in the sun and the ocean.
Just hang in there. Be happy. Smile at everyone. It's contagious.
Kim
plaquenil, lexapro, clonezapam, meloxicam, flax seed oil, nexium
Hi Virgi,
It is truly amazing the changes only one year can make. My diagnosis came in feb 2011. Like Liz, I was up until that point eating more or less what I wanted, and trying to do everything I had to and more, but in reality I felt awful and much worse than I do now. The changes I had to make in lifestyle, friendships and responsibilities have been sad, but its the new me and I have to move forward.
I wish you didnt feel so alone, because you gave us and always have our shoulders to lean on:-)
(((virgie))) You have made it a year with this disease. That is a great accomplishment. I often tell people that management is the key to living successfully with these autoimmune diseases. Gaining an understanding of "Spoon Theory" was helpful to me. Arranging my life so that I have thing that help comfort me like my polar fleece mumps scarf, camelbak water bottles, and ten stage filter help. There are tasks that I keep minimal.
Please take care of yourself. I hope you have a personal support system for yourself. I would hope that you view this forum as part of your support system.
Hi Virgi!! My heart goes out to you. I too know what it means for things to change with this disease. I miss the "old days" and the "old me". But I like to sometimes look at the positive things that I have gained through out this experience. I was diagnosed over 2 years ago but did not start Plaquenil until 6 months after my diagnosis, I know that it has helped me SO much but it took me about a year of being on it for a year. I went through a long time of mourning, mouring the loss of me, mourning having a disease, mourning the kind of Mom my kids would never have etc.
I have 2 kids and each day I am able to be with them. I learn so much from them, the simple wonders of the world. I try to slow down and see things that I would have often missed. I cherish each day that I have with them.
I am truly different, but not all the changes that have happened with me are bad. I have pain, I have things that I can no longer do, sometimes are terrible BUT.......in some ways I am more alive now than I was before. I recognize that I have limitations but they do not define me! I can make my life whatever I want regardless of this disease. I found all of you here and that is a gift! I have many gifts, I try to focus on that. It gets me through the rough parts.
Sending my best thoughts your way Virgi!!!
As a dog lover who doesn't have a dog, I'll say - at least you've got your puppy! And we know how much comfort they can be.
Truly though, I am sorry that you are going through so much. If you can, see if you can find some support - it might be by seeing a therapist, or using an antidepressant (with the guidance of a doctor), or joining some activity that you like, and getting to know people.
I moved to a completely new part of the country just after my diagnosis (for other reasons), and so had no one nearby. I joined a book club, and having been making friends there. I used the online tool meetup.org, which can be a great resource for finding people with similar interests, whether it be books or movies or knitting or politics or religious activities. Being alone makes this all feel much worse.
How is your energy? Are you able to get out? If so, try to get some fresh air every day - it will make you feel a bit better. If you are still working, try to enjoy the people around you.
Hope things feel better soon. It's a long process to deal with this health problem. There are times when it doesn't feel quite so bad, but it is hard to deal with the loss of all the things we could do that we can no longer do.
Dear Lovely All,
Thank you for replying to my post. This month has been awfully hectic and emotional. I am sorry for not replying before to this post to which you all so kindly replied. I had read replies but hadnt had the time to write. Im owing replies to all my threads actually.
I feel the warmth in your words meant to give me some comfort and companionship. They have ! How good it is to hear heart felt advice and feel understood.
I do sometimes feel so lonely and sadness takes over. Thank you for taking the time and inspiration to make me feel better. Every time im down it will be a task for me to come back and re read this thread.
Virgi
Aaawwwww
Virgi, I'm sorry that you've had such a hard time this past year. And I'm sending you some seriously soft and extra fluffy
( ( ( H U G S ) ) )
my friend and when you're here, you're with family.
Take care of yourself -
Patze
Thank you Patze !! oh fluffy ones to you too :D
So much can change, can't it Virgi? Plans, ideas, hopes...and most especially lifestyle. I've been sick for 18 months and diagnosed for 2. And as each season goes by I learn a little more how to live with it. This Thanksgiving underscored that when I feel tired and badly, I do *not* want to just "push through it" until I'm done cooking/cleaning/decorating. If I do, I will pay the price two or three days later with a pretty little flare. Easy to know but hard to live by!
So hang in there and know that little gains are big victories for us!
MB