Author Topic: The darkest days and does that mean a huge flare up  (Read 10682 times)

Joe S.

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Re: The darkest days and does that mean a huge flare up
« Reply #45 on: February 10, 2011, 10:50:27 AM »
If you were close, there is a chance that you will hear his voice or feel his presence for months to come. This was some thing that mom confided with me when dad passed. It went so far on a couple of occasions that she had arguments with him. Her voice is starting to disappear from me now. Both mom and dad are on my mind from time to time. I often remember things that Jan's dad and mom would say also as the situation presents itself.

I have had months of things to deal with after mom's death. I have her taxes yet to deal with.
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Re: The darkest days and does that mean a huge flare up
« Reply #46 on: February 10, 2011, 10:55:01 AM »
Hi Bopeep  :)

I don't know how anyone can tell you 'the worst is over'. The next year is going to be hard. Every time there is a special day, birthday, anniversary etc - it will be hard. Grief is a process and passing through it takes different people different amounts of time. It has no deadline.

I haven't lost a husband but my mother's death hit me very hard and I lost my appetite for ages. I felt as though I was floating on autopilot for at least a month. I seemed to be in a parallel reality.

I understand you not wanting to be dependent on people but do take up on short term offers of help. Keeping busy has its advantages but letting go and not bottling everything up is important too. 'Bottled pain' is very stressful.

We're all here for you as cyber shoulders and listening eyes but if things get too much physically - do take help offered.

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!


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Re: The darkest days and does that mean a huge flare up
« Reply #47 on: February 10, 2011, 01:37:07 PM »
Hi BoPeep,

I am so sorry to hear of your loss.  I hope you can find and accept the support you need at this time.  Grief takes as long as it takes for each of us, so I agree, please don't hesitate to share here or elsewhere.  Holding in the emotions is ultimately more stressful than feeling them.  One day at a time . . . sometimes one moment at a time.  My thoughts are with you.


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Re: The darkest days and does that mean a huge flare up
« Reply #48 on: February 10, 2011, 01:48:48 PM »

I can't begin to understand how you are feeling just now, but I wanted you to know that you are in my thoughts and prayers, as is your dear husband.



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Re: The darkest days and does that mean a huge flare up
« Reply #49 on: February 10, 2011, 08:00:42 PM »

It's good to hear that so many have come to your side to help. I'm sure you've worried about caring for the little lambies. :) So good there's some help there.
From your posts you strike me as a very independent person, and a kind and caring woman. Please do not worry about being a burden on people! I have the feeling you have given much to help others in the past, and since life should be give-and take, now is the time for you to "take back" a little. Please know that it does those who help you just as much good as it does you. :)

I'm sure today was so difficult for you, burying your dear Bill. He will always be with you, but the next days, weeks, and months will be tough on you. Grieving is certainly a process. I think our bodies and minds actually protect us from too much in times of crisis, so you may not have any flares. Just take care of yourself; remember to eat and try to rest, and reach out to those who love you. Not a bad idea to check with your specialist and let them know what you're dealing with; they may have some helpful suggestions.

Keep posting us, remember all of us here are with you in spirit, dear. Sending you gentle hugs and prayers,


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Re: The darkest days and does that mean a huge flare up
« Reply #50 on: February 10, 2011, 09:14:01 PM »
Nutrition is necessary so each time you take a bite of food, take a little sip of water. This will help tremendously.

So sorry for your loss. I wish you well.


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Re: The darkest days and does that mean a huge flare up
« Reply #51 on: February 10, 2011, 11:14:29 PM »
Dearest Colleen:

You have my sincere sympathy for the loss of your husband.  I echo the advice of others.  Grieving is a unique process for everyone.  If you want to cry, do it.  If you feel like screaming, let 'er rip.  Do whatever you need to get through each day.  Keep your family and friends close for help and support.  If you are spiritual, remember God and his angels have their arms around you now.

You are always in our thoughts and prayers.


LeoLady  (Melinda)


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Re: The darkest days and does that mean a huge flare up
« Reply #52 on: February 11, 2011, 03:18:59 AM »
sweet bopeep~u can see by the flood of peeps here that u HAVE support ~here~...
but dear1 u NEED ta let peeps in ur real life be there 4 u as well!!!

peeps sumtimes don't know what ta say or do in these kinda situations...
most of 'em (legit friends & family) would WELCOME the thought that they could help u @ this time!!!
i know i wish i was right there...right NOW ta have ya say ta me...could u...or would u...know what i mean sweets???  
imagine how the peeps that luv ya feel!!!  :)

do u have family & friends that live close ta ya???

ta try & answer ur question 'bout swallowin'...i just had an endoscope/colonoscopy last fri.
& have had difficulty makin' the swallowin' MOTION...when i asked my patoot guy what had 'caused that
 REALLY FREAKY just can't make the motion thingy he tol' me it was due ta complications w/my shugs...
basically more nerve damage in my lil' body!!! (end result isn't so good!!!)   :-\

so please dear1 if it feels like more than just dry mouth & not enough moisture ta move the food down...
get inta a doc so they can RULE^OUT nerve damage ta ur inards!!!

i am TRULY sad 4 u & what u are goin' through right now...both emotionally & physically!!!
if u need an ear...we are here luv!!!  

~*flutterfly...sendin' much luv & ever so peaceful thoughts ur way!!!*~   :-*   :)   :-*

EDITED TA SAY...i found a great explanation on what happens when we swallow!!! BUT my whiz of a twinzie on postin' links here is busy gettin' ready 4 rheumy seattle's the site & i looked under DYSPHAGIA! which literally means...difficulty swallowin'!

hope that helps! u'll notice from their homepage u can look up just 'bout anythin' & get it in normal folk talk!  good luck!   :)  oh i think i gotcha ta home page! who woulda thunk u could just type it out & whablamo...there's the link! hmmm!
« Last Edit: February 11, 2011, 05:41:08 AM by flutterfly »


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Re: The darkest days and does that mean a huge flare up
« Reply #53 on: February 11, 2011, 05:02:30 PM »
Colleen, I am deeply sorry for your loss.

Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.


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Re: The darkest days and does that mean a huge flare up
« Reply #54 on: February 12, 2011, 10:25:20 AM »

Colleen, I am so truly sorry you have lost your husband, the shock must be so horrific and losing him must be too hard to bear!!

I am praying for comfort & healing for you.  Grief is the worst thing and there is no specific timescale for it and you are in the very early stages of it.  I really hope you have your family around you at times for comfort.  I glad you have the farm, because if you can keep it up that will help you keep busy, mentally as well.

No words can really help the pain you are feeling but just take each moment as it comes...

Thinking of you!! God Bless your heart, lots of love


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Re: The darkest days and does that mean a huge flare up
« Reply #55 on: February 12, 2011, 03:02:42 PM »
Colleen, I am glad that you had the herd culled cause that should help you enormously. It is going to be tough but if you got rid of the sheep I would think that you would just want to curl up and die. The sheep have been such an important part of your life and your marriage for so long.

We raised a few sheep and lambed when our kids were growing up. I always thought that a person could lie down in a pasture next to a sheep and feel comforted. They are such a "biblical" animal and are generally a kind animal who love their young. Lambing is such a special and exciting time. Now, those big bucks are another story. Ornery!!!!

Anyway, I wanted to tell you that when people tell you the worst is over--ignore them. They don't have a clue. I am like Scottie cause when my dad died my stomach literally felt like it dropped about 50 feet and I would have this sinking feeling every day. I couldn't eat well for a long time and just walked around in a daze for a long time.

That is with a parent and I can't imagine what it would be like to lose a spouse. Just hang in there one day at a time is all you can do. Cry whenever you feel like it cause it needs to come out. Talk to your hubby and don't be ashamed. I feel that the spirit of people who have passed is always near to us.

Now, as far as the swallowing goes. You may need to have a swallowing study down the road, but I would not worry about that for a few months unless you lost way too much weight. If you turn your head slightly to the side as you swallow you will find that it opens up the throat area and food will go down more easily. I have a swallowing issue and went to therapy to learn how to deal with it.

Also, keep liquids in a glass with a straw and sip when you swallow as needed. The straw is really helpful in swallowing liguids. Stress can tighten the throat muscles, and you have stress. Also, with the lack of saliva and the dryness the swallowing becomes more difficult. I find that meats are the hardest thing for me to swallow. Especially hamburger that is fried in a patty.

It works better to make meat loaf or other foods that include a sauce with the meat such as spaghetti and meatballs. I also make a lot of ground meat like pork, chicken, beef, etc and make salad sandwhiches which are very good when it comes to swallowing. I try to eat fruit or fruit sauce with the sandwiches.

I hope that you are able to cook for yourself. When my MIL lost her hubby she said that cooking for one was just terrible. It took her a long time to get the hang of it and she would always end up freezing soups and stuff as she had cooked too much.I also hope that you are able to have the energy to get out and about so that you don't become a recluse. Social interaction is very much needed. HOpefully you have some neighbors who will drop in often. Thinking of you often. Irish


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Re: The darkest days and does that mean a huge flare up
« Reply #56 on: February 12, 2011, 03:33:26 PM »
I do not know what to add, but please know I'm praying for you.


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Re: The darkest days and does that mean a huge flare up
« Reply #57 on: February 23, 2011, 10:34:06 AM »
Hi Colleen

I'm so sorry that I've come to this so late.  My heart goes out to you;  I hope that you're able to sense the love that's beaming across the world from Sjoggies everywhere.

I echo Carolina's feeling that there is no way the 'worst is over', as your friend tried to reassure you.  It sounds as though your marriage with your husband was a wonderful partnership and friendship.  It's right that you should grieve him so hard, but desperate to be in the midst of it.

One of the many good things about Sjoggies being all over the world is that there is someone awake and at their computer every hour of the day and night.  So when you feel low in the middle of the night come here and find one of us - in England I'm a whole half day away!

Have you been affected by the earthquake?  Which island do you live on?  Know that you and all New Zealanders have been in our prayers these past few terrible days since the earthquake in Christchurch.

Thinking of you - Chickpea


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Re: The darkest days
« Reply #58 on: May 17, 2011, 09:29:25 AM »
 :-\  Not my darkest/worst day so far, but dark never-the-less.  Trying to keep my cool, but.....I am in a bit of distress and dare not go home sick from work (saving sick days for REALLY dark days).  Breathing is weird - like trying to breathe with a thick filter in my chest, chest aches, back aches more...leads to an all around crappy feeling and making it very difficult to just concentrate on working.  So here I am, just for a moment, reaching out for some Sjoggies hugs.


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Re: The darkest days and does that mean a huge flare up
« Reply #59 on: May 18, 2011, 04:26:17 AM »
Dear Sharper

I'm so sorry to hear that you're having tough days - it's good that you came here to tell us.  Would you like to start a new topic and tell us more about what your daily life is like?  Did you manage to stay at work yesterday?  Could you rest and relax once you got home?

Thinking of you - Chickpea