Author Topic: SjS and grieving a loss  (Read 478 times)


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SjS and grieving a loss
« on: June 08, 2018, 02:20:13 PM »
When you have found yourself in times of grief what have you found has helped you avoid or mitigate a resulting flare?

I lost my last sibling this week, she passed away after a nearly two-year journey with cancer. I am bereft and trying to keep it together and trying to figure out how to avoid a potential downward spiral into a major flare.

FYI I can't take a great deal of time off from work. I've already been away over the past few weeks helping with her care and I'm an entrepreneur, if I don't work I don't get paid. I'm already behind on providing clients with work that was due.

Any thoughts you have would be welcome.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.


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Re: SjS and grieving a loss
« Reply #1 on: June 08, 2018, 04:20:18 PM »
Dear SjoGirl,

From both my personal experience with Sjogren's and my experience as a psychologist, I recommend allowing yourself to feel and acknowledge all the feelings of loss. When we give ourselves permission to cry, talk, and write about our pain, it can help keep our bodies from having to "feel the pain" for us." If we stifle our emotions, there is a greater chance that those emotions will get lived out through increased body pain. It's not easy to give yourself time for grieving when you're self-employed, but it helps to set aside a half-hour here and there during the work day to take a grieving break.

I too have lost a sibling in the past, and I'm sorry for yours. Be gentle and kind to yourself during this very difficult time.


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Re: SjS and grieving a loss
« Reply #2 on: June 08, 2018, 06:15:17 PM »
My sincere condolences, SjoGirl... That has got to be so hard!! I dread the loss of my siblings. I have two older brothers and I'm not young myself.

I hope you will be able to tap into a group for grief loss or have someone else to talk to who understands.

Self-care  is of utmost importance.

Much love to you.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease


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Re: SjS and grieving a loss
« Reply #3 on: June 09, 2018, 06:39:27 AM »
I am so sorry to hear about your loss.

As Nancy and Jazzlover have said, it's important not to suppress your feelings.   Would bereavement counselling be an option?

Looking at it in a different way, I have sometimes found that a job helped me "hold myself together" when I was upset about something. 
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.


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Re: SjS and grieving a loss
« Reply #4 on: June 09, 2018, 05:30:11 PM »
Therapy and counseling help me deal with grieving and loss, and my life in general.

I have had therapy, psycho-therapy and counseling most of my adult life.  Anti-depressants have given me back my life many times.  I can no longer take them due to the sudden appearance, after many many years of side effects too serious to continue with antidepressants.  Anti-depressants not only help with emotional pain, but may also relieve physical pain.

A course of prednisone will interrupt a flare in many cases:  a so-called taper pack.

Regards,  Elaine
« Last Edit: June 10, 2018, 07:45:21 PM by Carolina »
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Re: SjS and grieving a loss
« Reply #5 on: June 10, 2018, 04:08:23 PM »
You can search "your county + grief support" and options will come up. There are grief support groups in churches, etc.
I went to a support group at a Moravian Chapel for Parents who have lost children and it was very calming.
When I did Hospice for my mother, they gave me a pamphlet with information for caretaker support.

I did go into an extended flare. But when the weather got nice and I could go out for walks, a drive it was easier. I also, since she passed from cancer.. focused on 'my reality' that she was then/now free.
« Last Edit: June 10, 2018, 04:16:40 PM by quietdynamics »
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Re: SjS and grieving a loss
« Reply #6 on: June 12, 2018, 03:33:19 PM »
Sincere condolences SjoGirl,

What a difficult time for you. I see you've been given good advice already. Stress tends to make stuff worse for us, but you also have to grieve because pent up grief is more stress.

You know you can sound off in here anytime. Really sorry for your loss.

take care - Scottie   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!