Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: 4Kids on May 15, 2012, 03:53:00 PM

Title: Lost my sister and am in a flare
Post by: 4Kids on May 15, 2012, 03:53:00 PM
She was 33. It was likely an accidental drug overdose.  She battled mental health troubles (bipolar, manic, concurrent personality disorders) and addictions for a good 16-20 years. It is awful.  I am having a hard time processing it, it is 20 months after the death of my mother. A lot of my family wants to not acknowledge her struggles at her funeral. I feel like they are trying to make her someone she wasn't. Like, she never fit in and nothing was ever good enough, and now they are burying some person who didn't exist. Maybe once the funeral happens I will feel better.

My youngest son clapped me in the face on the parotids on Sunday with both hands, hard. And now my face is hurting, right through to the bottom of my teeth and a bit swollen. I am congested and I feel like I am wearing the dreaded lead pajamas. I do not know if I should just bite the bullet and ask the dr for a light steroid dose or if I just rest up and go with a swollen hurting face. It is not huge swelling, but it is puffy and there.  I know trauma causes flares and so does huge slaps to the parotids.

I am breathing in and out I am calm. I am upset and grieving though while I am fairly calm.
Title: Re: Lost my sister and am in a flare
Post by: Iris on May 15, 2012, 04:02:11 PM
I am so sorry, 4Kids.. I'll be praying for you.. 
Title: Re: Lost my sister and am in a flare
Post by: eyeamdry on May 15, 2012, 04:13:33 PM
Sorry for the loss of your sister 4 kids.  It is especially poignant because of her method or cause of death.  Perhaps you  all can remember her good times right now and just try to get through the funeral.  Things will go back to a new normal after awhile.  If you need to deal with any issues between you and your sister and they are still bothering you, see about seeing a therapist later.  Hopefully, you'll be ok.  Lucy
Title: Re: Lost my sister and am in a flare
Post by: Sleepy In Seattle on May 15, 2012, 04:15:41 PM
Oh my goodness - I am so sorry.  :(

It seems like it's never just one cruddy thing at a time, is it?

What about getting some steroids "just in case" but not taking them unless you really need them? Sometimes just having them on hand can help you feel calmer and work through things...kinda like a security blanket, LOL....

Be sure to be kind to yourself. Eat foods you like, drink LOTS of water, get extra rest. Let the housework go a little bit and be gentle with yourself. Buy some silly magazines, watch a good movie. And know we're out here thinking of you!!!!
Title: Re: Lost my sister and am in a flare
Post by: susan on May 15, 2012, 04:18:41 PM
I am so very sorry for the loss of your sister. It has been almost 3 years since my sister died in a murder-suicide situation. Loss of a sibling is tough, and I think when mental health or substance abuse is involved, some friends or family are unable to understand.

It takes time to process. I will be thinking of you; feel free to pm me if you wish!

I saw a psychologist for awhile as I had trouble getting a grip on the violence of her death---it was worth my time and money.

Also, take care of your health. My symptoms worsened during the worst of the grief.
Title: Re: Lost my sister and am in a flare
Post by: Daisy1234 on May 15, 2012, 04:46:42 PM
Dear 4Kids:

My heart truly goes out to you and I am sending all my energies to surround you and lend you all the strength I have.  Your sister's loss is very very tragic and the shock of the suddenness of it all has of course hit you so hard.  Extreme stress like this would send anyone into a spin.  It does you credit that you are able to remain calm, I so admire you for that.  I am so very very sorry for your loss.

Just be kind to yourself right now, only do what absolutely needs to be done and try your best to take care of yourself.  Tears can be healing as well, even if the ones we shed are dry tears. 

Sending many gentle hugs,
Daisy
Title: Re: Lost my sister and am in a flare
Post by: Gayle on May 15, 2012, 05:01:05 PM
Dear 4kids,

I am so sorry for the loss of your sister. We all have our own life to live and it can easily be said that many can't accept us when we are alive much less when we are gone. It is hard for them and maybe they want to create a 'better' memory. Just take care of yourself and know we are all out here, ready to lend a shoulder to cry on. Sending prayers and hugs your way.
Gayle
Title: Re: Lost my sister and am in a flare
Post by: eye2dry on May 15, 2012, 05:08:35 PM
So sorry to hear this.....yes, you are grieving....you are entitled to do so. After the funeral settles down and you no longer hear disturbing comments by others....this grieving process will go forward much better.

Take care.....


eeye2dry
Title: Re: Lost my sister and am in a flare
Post by: Carebear on May 15, 2012, 05:13:27 PM
Dear 4Kids,

I am so very sorry to hear about the loss of your sister.  It is awful, as you said.  I lost my brother in a similar way, 27 years ago.   I hope you have someone close to you who you can talk to.  That was how I got through it anyway.

As for your flare, why not see your doctor about it?  You are dealing with enough right now.  Take care of yourself.   I'm glad you were able to share with us.



Title: Re: Lost my sister and am in a flare
Post by: Ark mom on May 15, 2012, 05:29:48 PM
4kids, what a tragedy for you and your family.  I am truly saddened for you.  I do not have an advice, but I just want you to know that I am here for you, to listen, to care.  Hugs, Hannah
Title: Re: Lost my sister and am in a flare
Post by: Cindy on May 15, 2012, 05:39:17 PM
Im sorry for your loss, losing a sister must be really hard. I be praying for your family,

I hope your swelling goes down really soon and you don't need steroids.
Title: Re: Lost my sister and am in a flare
Post by: Scottietottie on May 15, 2012, 05:52:29 PM
Hi

I'm sorry you are going through this. Grieving is certainly enough to bring on a flare. It's probably the biggest stressor of all.

Take care - Scottie
Title: Re: Lost my sister and am in a flare
Post by: mshistory on May 15, 2012, 06:27:45 PM
I am so sorry for your loss. Saying a prayer for you and your family.
Title: Re: Lost my sister and am in a flare
Post by: Bucky on May 15, 2012, 09:23:16 PM
I''m so sorry for the loss of your sister. 

With sympathy to you and your family.

Bucky
Title: Re: Lost my sister and am in a flare
Post by: KarenR on May 15, 2012, 11:22:59 PM
Dear 4kids,

Even though others may want to skip over the details of your sister's life and death, the one thing everyone will agree on is that she is now at peace. Take care of yourself now.

Karen R
Title: Re: Lost my sister and am in a flare
Post by: rudytudy on May 16, 2012, 05:17:18 AM
I'm so sorry for your loss.  You're in my prayers.
Everyone grieves differently as I've learned.  Be as patient as you can with others as
you all deal with this.  Most importantly take care of yourself for you and your children.
God bless.
Title: Re: Lost my sister and am in a flare
Post by: cargillwitch on May 16, 2012, 06:00:40 AM
you must be in shock with two deaths so close to your inner circle in such a short span of time.

Hug your babies ,and do take as good care of yourself as you can for them (as well as yourself.)

So very sorry for your loss.
Title: Re: Lost my sister and am in a flare
Post by: Skylar on May 16, 2012, 06:46:31 AM
I'm so sorry to read about the loss of your sister, very sad indeed. My sympathy to both you and your family - suicide in a young person is always so difficult to comprehend.
Title: Re: Lost my sister and am in a flare
Post by: Carolina on May 16, 2012, 06:56:15 AM
Oh dearest 4kids,

You lost your sister in such a painful and tragic way, and nothing can ever make it right or easier.

I agree with you that the right medications could ease some of the inflammation that makes all the pain you suffer.   

Take good care of yourself, please.

Gentle hugs,

Elaine
Title: Re: Lost my sister and am in a flare
Post by: MissyLouWho? on May 16, 2012, 07:02:00 AM
I am so sorry for your loss.  What a devastating tragedy.  You are going through a ton of emotions, I'm sure.  It's normal to be angry at your sister for living the lifestyle she chose and angry at the people who are trying to make her sound like someone she wasn't.  I think people tend to try to remember those that die in a better light for themselves, not the person who passed.  It's a coping strategy for them I think.  You really need to talk out your feelings and get it all off your chest.  It doesn't have to be a professional, talk to your family or friends.  Just talk about it.

We don't always know why people do things they do and make the choices they do.  But they all have their own reasons.  One thing for sure is that I know even if you are frustrated at the moment by the whole situation, you love her very much.  Maybe after you talk it all out with someone, you can get past all the bad stuff and focus on the good stuff.  I hope you find peace soon.  And I hope you feel better soon with your flare.  I know for me, my emotions are amplified when I'm in a flare, and with you already being in an emotional situation, I'm sure it's way worse.  Please make sure you eat and stay hydrated so the flare doesn't get even worse.  I know eating and drinking isn't something you're thinking about right now, but I don't want you to get worse.  I send you many hugs, inner peace and positive thoughts. 
Title: Re: Lost my sister and am in a flare
Post by: gardenlover on May 16, 2012, 07:09:36 AM
With greatest sympathy to you and your family & friends,
Sending a prayer and comforting thoughts your way...
Title: Re: Lost my sister and am in a flare
Post by: gold55 on May 16, 2012, 07:28:31 AM
so very sorry for the loss of your sister.  my prayers are with you.
Title: Re: Lost my sister and am in a flare
Post by: 4Kids on May 16, 2012, 07:29:31 AM
Thank you all so much, from the bottom of my heart.  Today is a bit better so far.

One thing to point out is it wasn't suicide. She just couldn't quit. She had been taken out of my mother's will for this reason but the lawyer missed removing her from one rrsp which we just got in April as we waited until it matured.

And especially thank you for pointing out various reasons why my family is acting the way they are. That is very valid and I didn't think of a lot of those, well mostly any of those other than just trying to make all that stuff not exist. I am still very worked up after my Mom's passing and funeral. Her funeral was a very complicated thing--she ran a centre for first nations and metis families and high risk children. She did a lot of work for residential school survivors--she was a counsellor for ptsd as well. She wanted drums and dancing and a prayer and in particular I had one aunt who did not want that "for my gramma" and so I had to very carefully work this dance because my Mom asked for what she wanted, and that is what she got. It seems crazy maybe typing this out but I feel the funeral should suit the person as well as comfort the living.

All was well with my grief until they told me the service was done by a certain demoninational minister--and it is my Gramma's church which no one else attends. Esp my sister, she hated that stuff.  However, in a small town only so many are available to do these services which are held outside an actual church and this is what we get I guess.

My dad is not doing well.  He has a lot of guilt over my sister. Intervention style... It is hard to talk to him but he tried yesterday but it didn't go so well, we just both were crying and he offered to change everything which is very difficult. I have nothing for him to change it to.

And my other family members are who they are.  I miss my Mom so bad it hurts. She was completely different than everyone else. Well except my sister but my Mom was not an addict, she was wonderful. After her funeral a man who could hardly talk from substance abuse damage came up to me and said that this was his second year sober because of her.  I have wonderful friends and probably will chat it out with them when I see them.

But thank you all for listening. So much.
Title: Re: Lost my sister and am in a flare
Post by: irish on May 16, 2012, 01:36:55 PM
Dear 4kids, She was your sister. You grew up together and had a lot of connection there in spite of any problems. I am so sorry that she passed away. People are not always very nice---especially in situations like these. They forget that it could well be one of their family.

I hope that you can get your autoimmune under control. If you can't call the doc and don't try to be a hero. This is just one of those times when the emotions will be running rampant and you know that it will keep your immune system on edge for a long time.

Know that we are all thinking of you and sending up prayers. Hopefully there will be others at the funeral that will share in all the good memories to be had of your sister. We all travel through this life and touch someone else in a positive way. I would bet you will hear a lot of good about your sister in the coming days. Cherish these memories and hold them close. God Bless you as you go through the funeral and family interactions. Irish ;D
Title: Re: Lost my sister and am in a flare
Post by: 4Kids on May 16, 2012, 03:28:36 PM
He gave me 40mg pred a day for five days and only to use if I need it.

Love my GP but that is pretty hot and heavy. What is a good real dose? He said I do not need a burst and taper. I do not think I am comfortable over 10 mg and that is quite a lot imo.
Title: Re: Lost my sister and am in a flare
Post by: jazzlover on May 16, 2012, 04:32:33 PM
I'm very very sorry, 4kids. I pray you will find peace. And I do hope you begin feeling better from the physical trauma. OUCH!

Prayers for healing in all areas!
Title: Re: Lost my sister and am in a flare
Post by: Cricket on May 16, 2012, 05:31:00 PM
So sorry for your loss!
Title: Re: Lost my sister and am in a flare
Post by: Ceceraven on May 16, 2012, 06:19:29 PM

       Dearest 4Kids,  My deepest sympathy.  Be especially kind to yourself.



                                                  Ceceraven
Title: Re: Lost my sister and am in a flare
Post by: slccom on May 16, 2012, 06:35:14 PM
I am so sorry! I found a great book, A lethal inheritance : a mother uncovers the science behind three generations of mental illness   / Costello, Victoria, which might help you process what your sister went through. Her brain was damaged, and she probably did the best she could with what she had to work with. That doesn't mean the rest of the family didn't suffer as well, of course. I'm sure she loved you the best she was able to.

Hang in there, and feel better soon. Hugs, Sharon
Title: Re: Lost my sister and am in a flare
Post by: jazzlover on May 16, 2012, 06:43:25 PM
Speaking of books... for strength and comfort, get a copy of "Jesus Calling" by Sarah Young. She has a chronic illness and you can tell she has been thru it. It is a devotional that is like Jesus talking to you.
Title: Re: Lost my sister and am in a flare
Post by: kellyptyler on May 16, 2012, 06:51:08 PM
I'm so sorry..I'll be praying for you.
Title: Re: Lost my sister and am in a flare
Post by: Parched on May 16, 2012, 08:03:56 PM
Sorry for the loss of your sister.

Thoughts and Prayed sent your way.
Title: Re: Lost my sister and am in a flare
Post by: irish on May 16, 2012, 10:24:21 PM
You can safely take 40 mgm for 5 days and stop. The 5 days is the magic number. Anytime the dose is over more than a 5 days period it is generally a burst and taper or the dose that is tapered down.

If you need the prednisone and can tolerate the 5 days of the 40 I would think you would be ok.

Apparently the adrenal glands don't stop working when a 5 days dose of steroid is used. That is something I just learned lately. Good luck. Irish
Title: Re: Lost my sister and am in a flare
Post by: susanep on May 17, 2012, 12:06:43 AM
I am so sorry to hear about your sister. My mother passed away in March, and it is very difficult to say the least. There are no real words for what I am going through.

 Just take one day at a time, and do things that keep you busy, but resting all along as you need to.

It is easy for family members to not be at their best with each other during this time. Me and my sisters know we need to keep close to each other, yet I find myself easily upset at things they say, but I am handling that better now. I had to stop and think about their way of handling this is different than mine.

We are here for you, and we are all here for each other.

God Bless
susanep :)

Title: Re: Lost my sister and am in a flare
Post by: 4Kids on May 22, 2012, 05:42:28 AM
Well I made it through a funeral I didn't care for and we took her ashes to the river to a peaceful place.  No need for steroids, I made it without and said course of pred is safe in my medicine chest.

Thanks for all your support.
Title: Re: Lost my sister and am in a flare
Post by: gold55 on May 22, 2012, 07:43:40 AM
I'm so sorry 4kids.  Take care of yourself.
Title: Re: Lost my sister and am in a flare
Post by: irish on May 22, 2012, 10:39:35 AM
I am glad that you made it through the funeral. HOpefully you will be able to grieve in your own way and feel better in the days to come.

I should also tell you that I read over my post about the 5 day prednisone, etc. I forgot to put in there that you would need to talk to your doctor more about your concerns. I was informed of this 5 day "rule" that the doctors follow in the past year. I had always wondered what the criteria was and my doc just told me.

So many things to keep track of when we are sick. Any time any stress comes we frequently have to re-evaluate our health status again. Good luck. Irish