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Sjogrens Topics => Living With Sjogren's => Topic started by: Joe S. on August 19, 2010, 09:52:05 AM

Title: What are your Worst Fears?
Post by: Joe S. on August 19, 2010, 09:52:05 AM
While I am not afraid of death, I view it as a transition from life that must happen naturally that will release me from pain.

I was once helping in a nursing home. I saw a gal in her 30's or 40's that was confined to a wheel chair. It was an electric wheel chair but she could not work the controls. Some one else had to work them for her. She could not talk, had trouble breathing and blinking her eyes. At lunch time, the nurse came by, opened a tube, inserted a funnel, and poured in a small picture of blended food. Check the bags on the wheel chair and took her away.

When I asked about her I was told it was a very sad case. She had no family or friends. She could not take care of herself. Her mind was active but she had no means to express herself. I believed that my challenges were minor at that point, but the fear developed that I might end up like her. They said that she had an Auto Immune disease. They also said that most do not get this bad.

I had what I believed to be Fibromyalgia at the time. I decided to manage this as best as I could. That was over 20 years ago.

Now you know my worst fear. What is yours?
Title: Re: What are your Worst Fears?
Post by: ohiolady on August 19, 2010, 11:07:56 AM
Well, I have a few.  I'll list them in order of concern.

1.   My mother has Alzheimers and I'm watching her deteriorate before my eyes.  This is my #1 fear that I will inherit this from my mom.  I think that is why I freak so much about Sjogrens brain fog.  No Alzheimers on my dad's side of family, just tons of autoimmune.
I would never want my husband or children to deal with watching me lose my mind.  My heart breaks for my mom as she was such an independent, strong woman.

2.   I had my left kidney removed due to cancer 1-15-09.   I don't spend much time worrying about this but when it is time for another CT scan or MRI  I fret because once you've had cancer, it can return.  I've been told renal cell can pop up again 20 years later.

3.  Worsening of autoimmune disease.  My latest manifestation is Gastroparesis and it is not that easy to deal with.

Obviously, losing my family would be the worst thing but I can't even go there.

Good thread, Joe.

Title: Re: What are your Worst Fears?
Post by: Scottietottie on August 19, 2010, 11:19:27 AM
Hi  :)

My worst fears are losing one of my children or my husband dying before I do.

Dementia is another fear. I don't want to be looked after by any of my kids.

Take care - Scottie  :)
Title: Re: What are your Worst Fears?
Post by: Sheltiemom on August 19, 2010, 11:21:15 AM
This might sound ridiculous, or crazy, or whatever.  But I've lived longer than a lot of people are lucky enough to do (I say "lucky" assuming their good health lasted well enough).

So - these are the things:

1.  That my children would pre-decease me.

2.  That my husband would pre-decease me.

1.  That I would pre-decease my dogs and therefore couldn't not see them through to the end of their days.  Luckily, I didn't and was able to take care of each one of them until they went to Rainbow Bridge.

2.  That I would be the last to decease of the family into which I was born.  I will be.


Title: Re: What are your Worst Fears?
Post by: inga on August 19, 2010, 11:35:15 AM
Both my mother and her mother had mother's came on earlier than my grandmothers.  I watched them both decline and die.  I worry about this abyss.  I was a nurse most of my life, and I saw the most awful the back of my mind, they were always there.

I have been married for almost 38 without my husband would be heck on earth....I hope I leave the planet first.

Losing a child or grandchild.  I almost lost my son in Iraq.  I never got back to normal.

I imagine being trapped in a body with a solid mind, unable to communicate is is being healthy and having a mind that is gone.

If I ruminate on the worst possibilities, it can paralyze me. 

I think there is such a thing as healthy denial....and I think it is fine to use it.
Title: Re: What are your Worst Fears?
Post by: anita on August 19, 2010, 11:41:50 AM
Certainly, being alone seems to be the likely response.  Yet my first thought (and one i worry about every now & then), is being a burden to someone.   I'd much rather leave sooner, then be a burden to my family.
Title: Re: What are your Worst Fears?
Post by: PrincessLeah on August 19, 2010, 11:42:48 AM
Right now, since I seem to be headed in that direction, I think infertility would be my worst fear -- I'm 32, and the thought of not having a family to look forward to is depressing beyond words.

That being said, if I did have children, my worst fear would be passing this horror on to them.  I wouldn't wish this on my worst enemy -- I couldn't stand the thought of someone feeling like this and having it be my fault.

Title: Re: What are your Worst Fears?
Post by: aussie mum on August 19, 2010, 12:33:08 PM
My daughter was diagnosed with SJS at 17, she is now 20 and has collected a couple of other auto immune issues already.

My greatest fear is that she'll never get to experience a "normal" life.

Will she ever be able to: Work full time, travel, marry and have a family of her own.

My biggest fear of all is that she will never know the feeling of being WELL - ever again.

Aussie Mum 

Title: Re: What are your Worst Fears?
Post by: Carolina on August 19, 2010, 01:01:32 PM

I don't have many fears really.

Research on nursing home patients found that at each stage people were pretty happy.

NOT in a nursing home, they thought they were happy, but wouldn't BE happy in a nursing home.

IN a nursing home, happy as long as not in a wheel chair.

IN A WHEEL CHAIR? Happy as long as not bed ridden.

Bedridden?   Happy as long as able to feed themselves, etc.

Of course happy isn't exactly the right term.  But older people are much more content and satisfied with their lives than younger people, it turns out.

I think pain is my biggest fear.  Constant unremitting unresolvable pain.    Pain is NOW and destroys everything else, the past, the future, other people, JOY.

To be in that sort of PAIN with no way to stop my own life.

Loss I have lived with all of my life, and it only shadows my current JOY to contemplate the pain of losing people I love.   It WILL happen.

It has happened.   I will survive, or not.   The 3 AM call.  

Last year we had a month of sheer agony over a misdiagnosis of an invariably fatal cancer for my daughter-in-law.  She was a day away from a double mastectomy (no it wasn't breast cancer but angiosarcoma) when the Harvard Pathologist said" NO, it isn't angiosarcoma".

Do you know what the hardest part was?  Knowing the pain her illness and death would cause my grandchildren, how it would forever mark and change their lives, and that I couldn't DO anything about that.

She does NOT have angiosarcoma.  She had a simple uncomplicated lump and it was removed and all is well.

But that pain, the pain of those I love, would be excruciating.

And yet, it is part of life.  And so I put it away as something to deal with when the time comes.

It always comes.


As Death comes, always.

Just breathe.



Title: Re: What are your Worst Fears?
Post by: Joe S. on August 19, 2010, 02:29:31 PM
confused, My mother-in-law had a similar experience. My mother would often visit her on weekends and report on problems in the home. My Wife's twin sister would be there evenings from Monday to Thursday wound would have to press to make sure proper care was given.
Title: Re: What are your Worst Fears?
Post by: Karen on August 19, 2010, 03:19:32 PM
My biggest fear is my husband dying before me.  Seems like my side of the family the husbands all go first, my mom lost her first husband (my dad ) when he was 45 to cancer, she just lost her 2nd husband (my step-dad) to cancer 8months ago, my grammy lost her husband, and I have relatives that lost husbands, so I'm very fearful of this happening to me.

I'm also fearful of developing cancer, as my dad and grammy both had cancers.

Another fear is loosing another child, I lost one child when he was 2days old, and it's the worst thing that a parent can ever go through, a complete nightmare, so I cherish my two boys who are soon to be 19, and 17, but I fear all the time whenever they are late getting home, or they are sick.

Title: Re: What are your Worst Fears?
Post by: SLEEPY101 on August 19, 2010, 04:46:10 PM
We have a close family friend who got MS in her late 30's. She had been in a nursing home for many years. Her family has turned on her. Her husband left he,r three sons nevery come to visit her and her sister and mother had cut her out thier lives. She has always been used to the glamourus life. She still tries t get her nails done and buys expensive bath profucts but the staff has been steeling from her. She can still speak and her mind works but there is no other residents that she can speak to most are 80s up. When I first started to get sit I up worried that my family and firends my abandon me.

But I have faith and keep plugging along. I don't really worry about myself. I just worry about how my sickness effects my family. My youngest son and been having legs pains for several years. They are fianlly going to start doing some tests. He also always have extremly dry chapped lips like mine. I wonder if this is a symptoms of Sjogrens. He is only five and afraid of medicine so I now he sometimes hides his symtpoms.

Another fear of my is my parents. The are 61 and in good health better than me. I am afraid when they get older and need help I mind not be able too. But faith can move mountains so I will have to take it day by day
Title: Re: What are your Worst Fears?
Post by: jstroble on August 19, 2010, 04:57:31 PM


My  worst fear is not being able to take care of myself.  I have trouble now letting anyone help me. 

Title: Re: What are your Worst Fears?
Post by: Epson on August 19, 2010, 05:48:07 PM
My worst fear is what they might find out from the tests that I had today, I know the results are bad, but how bad?
Title: Re: What are your Worst Fears?
Post by: Patze on August 19, 2010, 06:13:25 PM
Ack, I have enough to paper a room (small closet that is)! ;) ;D

Here are the top two - loosing kidlet before I go, and the other is not being able to care for myself. 

Title: Re: What are your Worst Fears?
Post by: harlin on August 19, 2010, 07:19:47 PM
My biggest fear? well lets see. I think loosing my family would be my worse fear. They mean so much to me I don't think I could bear it.

My other biggest fear that I won't be around to see my grandbabies grow up. I am getting a new grandbaby in January!! I just want to be healthy enough to spend all my time loving on them.
Title: Re: What are your Worst Fears?
Post by: Gerty on August 19, 2010, 07:33:58 PM
I guess from time to time Joe its been different and depending on what my life has experience at the time like you seeing the women that has a mind but can't do anything for herself. Right now my worse fears is my S.L.E coming back. I was told that when it comes back it will be worse then what I was at the stage of getting a walker just to move around the house I was house bound and spent most of my time in bed. So if it came back worse then it was at that stage I fear how would I be could I be like this lady your talking about later down the track.
Title: Re: What are your Worst Fears?
Post by: BonusMom on August 19, 2010, 09:25:07 PM
Being abandoned by friends and family when I need them the most; the death of one of my children or my husband; and when my body is but a shell of what it once was and I am a burden on my family and society, not being at liberty to say enough is enough and ending my journey when I'm ready.
Title: Re: What are your Worst Fears?
Post by: jessica1104 on August 19, 2010, 10:32:01 PM
My biggest fear is that I will never feel well again, that I won't ever have the feeling of opening my eyes from a nice night's sleep and feeling rested and ready for the day. :(  I also worry that my healthy husband will leave me bc of my disease.  He is so supportive and I keep as much as possible bottled in because I want to appear normal, but it's still worrisome.
Title: Re: What are your Worst Fears?
Post by: LeoLady on August 20, 2010, 12:30:20 AM
My worst fear is losing my husband.  We will celebrate our 40th anniversary next May and have been together for 44 years.  He is my other half.  It's unimaginable that he would go before me.  My parents are dead.  My in-laws are dead.  My brother is dead.  I have one sister left from my "first" family and haven't seen her for 6 years since my Dad's funeral, due to economics.  (she's in NV, I'm in OK)  I want to see her so badly before something happens to either of us.

Second worst fear - anything happening to my grandchildren.

I really don't worry about me too much.  What will happen, will happen.



Title: Re: What are your Worst Fears?
Post by: Kerrikins on August 20, 2010, 05:30:18 AM
I have the fears of losing my children or Dh but besides that my worst fear right now is my disease becoming debilitating. I have 4 kids ages 13, 9, 4 & 2 and I don't want to miss out on their lives or my Dh's life or have my illness cause them to miss out on anything. I want to be able to be there for them and I don't want my kids to look back and remember me always being sick. At this point I am only occasionally laid up on really bad days but for the most part I am able to power through my fatigue and pain and lead an active life. I just wonder sometimes how much longer I can do it. My health is like a snowball, it was going really slowly downhill at first with only a few issues but now it is worse and picking up speed. :(
Title: Re: What are your Worst Fears?
Post by: LizPetillo on August 20, 2010, 05:53:33 AM
Getting THRUSH from this sjogrens.

During the past 4 months I was misdiagnosed with severe thrush.  They gave me all the antifungals.  I had very, very bad reactions to them all.  Then we find out I didn't have thrush at all. Now I know that people with Sjogrens get thrush a lot.  God help me if I have to try to take any of those meds again. 

I'd rather run my car into a tree and end it.  Really. 
Title: Re: What are your Worst Fears?
Post by: kwolfsheimer on August 20, 2010, 06:20:39 AM
I am not afraid of death.  I am afraid of getting old with this disease and all my other stuff because I don't think I can take care of myself.  I am fighting right now to work as long as I can.  I worry about getting my kids through college and since Social Security will be dried up and gone, I worry about having enough resources to get me through if I should make it to old age.  Like Kerrikins, I wish I had a bit more energy so I could be a better Mom and wife for the here and now.
Title: Re: What are your Worst Fears?
Post by: aussie mum on August 20, 2010, 11:19:53 AM

Thanks for your thoughts about my daughter yesterday, thankfully she is going well at the moment - more good days than bad - but as I'm her mum I still worry.

On reading what you are going through my daughter has got it pretty easy. I truly hope you find some answers soon.

Take Care
Aussie Mum

Title: Re: What are your Worst Fears?
Post by: season on August 20, 2010, 09:21:45 PM
Fears? Oh there are many. Besides the usual health, financial, family issues, I think one of my greatest fears is to think what is going to become of
our country, America in the years to come.

Our country has changed dramatically in the past 10 years and it is scary to think where we may be headed.
 Starvation, homeless, no jobs, violence like we have never seen, severe weather changes, sickness, lack of clean water and I could go on and on.
Title: Re: What are your Worst Fears?
Post by: eyeamdry on August 20, 2010, 09:36:20 PM
Title: Re: What are your Worst Fears?
Post by: Suzie on August 21, 2010, 01:55:52 AM
kerrikins, I'm right with you.

My priority in life is to be a good mother. It's so hard to give my kids the attention and energy they need. And I always wanted to give them a better example of how to live a happy and fulfilling life than my mother gave me.

She never did anything, or went anywhere. Never socialised or took an active part in life. She never showed us that she enjoyed life or engaged positively with the outside world. And here I am. Unwillingly repeating her pattern.

When I can, I go out and see friends with the kids, and I try to hide my tiredness. To reach out and live. I never, ever promise my kids we'll do something "later". Who knows how awful I'll be feeling by then?

It's another Saturday with the kids stuck in front of the TV. Arguing. They fight over everything. I'm too tired to play with them. It's too hot to go outside. And now I want to put ear-plugs in and lie down in a cool, quiet room. Correction, I don't Want To. I simply have to.

What's my worst fear? Being a terrible mother.
I can't even think about our financial situation with me unable to work.

Title: Re: What are your Worst Fears?
Post by: littleme on August 21, 2010, 05:37:50 AM
It seems like many of us have the same or about the same fears.

I feel like this I am a ticking time bomb sometimes.  I am afraid of when my symptoms are going to explode and really slow down my life.  Right now I try my best to push through it and hide a lot.

 I only rest when it is really bad.  I feel like I constantly am complaining about something not feeling right.

I fear losing my family to this.  My husband and I have always been very active, I fear I will frustrate him.  I fear my two little guys will find me boring or always sick b/c I can't do as much for them. 

I fear the future.  The unknown. 
Title: Re: What are your Worst Fears?
Post by: Katybarstool on August 21, 2010, 02:53:44 PM
My worst fear at the moment is that I need more surgery - and will lose my job because of my sickness record. My fear for the future is that I lose control of my life because of SJS.

Title: Re: What are your Worst Fears?
Post by: Patze on August 21, 2010, 05:31:14 PM
Sending you hugs my friend and I'll keep the fingers crossed that everything turns out well.

Title: Re: What are your Worst Fears?
Post by: eyeamdry on August 21, 2010, 05:55:37 PM
Navydad, I feel s**&&Y all the time and all that too.  I would like to say, though, I have a niece-in-law who has MS and has had it actively for about 15 years.  She is in a wheelchair and her legs are rigid.  Her hands won't work right and her speech is slurred. She just turned 50.  Their only daughter went off to college a month ago.
Her husband had to move from Pittsburgh to Charlotte to work, or be out of a job at 53 and they absolutely need his health insurance.  Her parents moved in with them about 9 years ago to help and they're still there.

I'm just putting this in here so I can remember this pretty, former dance instructor is paralyzed and dependent on others.  I/and most of us/are not there yet.  Thank God. 
Title: Re: What are your Worst Fears?
Post by: LizPetillo on August 22, 2010, 02:17:12 PM
I'm afraid I'll be 'lliving' (if you can call it that) for years with this evil inside me. 
Death can't come soon enough. 
(I'm having an extra bad day today .. as you can probably tell)

So that's my biggest fear ... 'living' for a long time.
The second biggest ... THRUSH like I said before. 
Title: Re: What are your Worst Fears?
Post by: RichyRich on August 22, 2010, 07:53:57 PM
For me, my fears are finding the right woman and then making her life difficult as SJS becomes more debilitating.  And also, should I have children, I fear passing on the genetic trait to them. 
Title: Re: What are your Worst Fears?
Post by: eyeamdry on August 22, 2010, 09:14:30 PM
Richey Rich: This you can manage.  If the time comes, you and your beloved could discuss this and make a decision from there.  It would be "your" choices.

My daughter is about at the age where chances of children are slimmer.  She has insulin dependent diabetes and some other things, I have Sjs and Fibro.  I think this might be a good thing that she hasn't had children.  If she had them prior to her 27 year old diagnosis of Type I diabetes, perhaps it would be ok.  I never told her but I'm glad she is not passing this bad gene pool along.

I'm not going to be in a wheelchair from this.  I'm facing two knee replacements right now.  I've already had a partial, which needs to be a whole - so I know the routine.  My fear of cancer returning is way bigger than this other stuff.  Lucy
Title: Re: What are your Worst Fears?
Post by: Mudpup on December 05, 2010, 02:45:06 PM
Wow where to start.
I never used to be afraid of Dying or Death before, but I have lost so many family and friends young and old. I lost my Husband 8 yrs ago to Cancer he had just turned 46. I worry all the time now that it could be me next as I have so many things wrong with me. how much does a body take before it says enough is enough.
I am really afraid of suffering before I die and having that major anxiety that people sometimes get in their last days. My husband had it and was on Ativan. Cancer is rampant in both mine and my husbands families. I really fear dying of Cancer. I had pre-cancerous cells of the cervix when I was about 28 that was all taken care of with a partial hysterectomy as I had already had my children. My Mom and her Sister died of Breast Cancer. So I always feel like Cancer is in the background waiting for the opportunity to pounce on me. I just recently found out on top of everything else I have an enlarged heart. I have to see the Cardiologist in March. I would rather die of a heart attack any day of the week.  I have lost my Mom, both of my In laws. My husband, my 18 yrs old nephew 3 Aunts and numerous  friends all to Cancer. My Dad has Parkinsons disease. and recently fell. he's 84. he now has to go into 24 hr care I have been getting very upset and having anxiety. about this more for him because his mind is still sharp and almost 100% its his body letting him down. now he is reduced to this. My heart breaks for him. I know 84 is a good age to still be around. but its about how you go for me. I hate watching my family suffer right in front of me & feeling useless.  When My husband got Cancer that was the final straw for me. We had not long become grandparents to a beautiful little girl Carmen the first grandchild and the first girl. We had 4 sons. so she was the apple of my husbands eye. he absolutely loved her to bits. Me too of course. and 2 yrs prior to his death the last of the boys had left home and we were just starting a new chapter in our lives. and it was all snuffed out in the blink of an eye. Please anyone don]'t take offense at what I am about to say as it is not intended to be that way. But to this day I hate it when someone says to me, well God had plans for him. Well excuse me but we had plans as well and it included living out our lives together and seeing our grandchildren grow up together.  I walked away from my faith for good. Don't get me wrong I know everyone dies and regardless of if I believe or don't believe those same people would probably had died the same way at the same time. its not about that for me. It goes way deeper and it would take a long time to put it all down in writing. Maybe I should write a book about it.  All of my health problems started since my Husband died. and my Rheumy said a lot could be linked to extreme stress and trauma. I believe her too.  I am really sorry I didn't intend on getting this deep into my fears etc. but I guess it's better out than in. again please I don't want anyone to take what I said as a dig or anything like that at religion. this is just my own personal thoughts and feelings. I hope you understand.  Big hugs and thanks for listening to my rant  :) :'(
Title: Re: What are your Worst Fears?
Post by: Joe S. on December 05, 2010, 03:08:51 PM
Weather you have a book or not, it would be a good idea to write things down. It  will help you work through what is happening to you.
Title: Re: What are your Worst Fears?
Post by: Mudpup on December 05, 2010, 03:17:51 PM
Good Idea Joe I should pick up a journal type book today. I will go for stretches of feeling good and that I have battled all of my demons and then Wham right back into a downer again. I often wonder when or if I will ever get my head sorted out never mind my body. I don't sound like someone who has moved on and is now in a relationship do I? Don't get me wrong I am very happy and he is a great guy.  we are now living together. But I can't put the past away so I can get on with looking after my health and well being. I have found a new path that I am loving but its a very new path and I am just learning. but for sure I am very in touch with nature now and see it in a different way. I really love this community. thank you to who ever started it and to all the great people who reside here :) xox
Title: Re: What are your Worst Fears?
Post by: dry2010 on December 05, 2010, 03:56:26 PM
My worst fear was realized this past March when my only child was killed in a automobile accident. My next worse fear is that I have cancer and they are missing it and putting my husband thru that. We have had a heck of a 2010 and can't hand;e much more this disease has really messed with my head.

Title: Re: What are your Worst Fears?
Post by: doodlebug on December 05, 2010, 05:07:18 PM
If you would have asked me when I was 20 I would have said- getting divorced/being alone, not being able to have kids, death, not being independent, being disabled, being robbed, losing everything.

At 35 I have been divorced, had one child, lost two and can't have anymore, I can't work to support myself due to this illness, and we had a house fire that destroyed nearly everything.

Now I would say losing my son's heart, losing the ability to take care of myself, not having a companion, taking care of my parents if I don't get better, dying the way my grandpa did (He had major internal damage from a chemotherapy leak and slowly died in massive pain over nine weeks.)

I wonder what it will be in another 15 years.
Title: Re: What are your Worst Fears?
Post by: Joe S. on December 05, 2010, 08:15:53 PM
At this stage, I am going to suggest that you be conscious and careful of what you dwell on. Try to think positive good thoughts. Bring humor into your life. Most comics draw on the tragedies of their lives for their humor and restore success.
Title: Re: What are your Worst Fears?
Post by: eyeamdry on December 05, 2010, 08:23:41 PM
Joe right you are.  I'm just rereading this thread and basically, I forgot about it.  It could be brain fog, but I choose to think it's selective forgetting.
I don't remember writing this stuff...........well after reading it I do. 

We must all try and be the best we can be and laugh when we can, even if it's at ourself.  Lucy
Title: Re: What are your Worst Fears?
Post by: Sandisue on December 05, 2010, 09:52:01 PM
Title: Re: What are your Worst Fears?
Post by: susanep on December 05, 2010, 10:59:17 PM
I agree eyeamdry

Title: Re: What are your Worst Fears?
Post by: cat on December 06, 2010, 06:56:21 AM
When I started this journey I was afraid of the unknown. Then as the diagnosis' came along I was afraid I couldn't raise my youngest child the same as her two much older sisters. But she is an adult now and is coping with her lupus well. I didn't know I had all this stuff before I had her. I worried about ruining my husband's life but he is such a kind loving man that has not happened. His attitude is if it was him I do the same for him as he does for me. I was afraid of cancer because I'm at a really high risk and have seen many of my family die from it. Recently I was diagnosed with macular degeneration and have been terrified of loosing my eye sight.But this summer my fears for myself became insignificant. My beautiful 45 yr old daughter has had a complete emotional, mental and physical breakdown. She has gone from being a laid back happy go lucky caring person to an invalid. She is unable to take any of the medications which would help her. She had life threatening reactions and was hospitalized 3 times before they figured out it was the meds. The treatment now is cognitive therapy which she has no insurance for so my husband and I are paying the costs for that. She is unable to work at the job she loved and is barely able to take care of herself. Her husband has given up his job because it caused so much stress for her and he is seeking something simpilar and close to home so he can be there to assist her. She can't go out by herself, has stopped driving. Has terrible panic attacks and I could go on and on. It is heartbreaking to see this happen to our child. I call her long distance everyday because she needs my support. She lives over an hour from me and because I'm in such horrible shape myself, crippled with pain. I can not be running out to be with her. We have always been very close. Now my greatest fear is that my beautiful daughter will never be the same and I am terrified for her because she is so afraid.
Title: Re: What are your Worst Fears?
Post by: gsmraxe on December 06, 2010, 11:23:30 AM
Since I have two kinds of cancer, one which will never go away, and the other I won't know if it goes away unless it comes back.   ;D ;D

So one of my biggest fears is that I won't live to see retirement age.  I'm (almost)  42 now.
The other one is to get a bad AI disease (My SJS is mild) like Lupus or RA.  That scares the heck out of me.
Title: Re: What are your Worst Fears?
Post by: Dolly Dimples on December 06, 2010, 03:46:01 PM
  Right this moment  as I feel the cold so very easily, I fear that the power supply goes off and that i might freeze to death.

           I am in the UK and we are getting some pretty wicked weather snow wise!!
           I so pray that all our fears are ungrounded,
                      You all have my deepest admiration in the way that you still try to manage your lives.
                    Bless you all, Dolly x
Title: Re: What are your Worst Fears?
Post by: Patze on December 06, 2010, 03:56:45 PM
Aw Dolly, I'm sorry that the weather has gotten so awful so fast, and I hope that it settles down quickly for you.

I'm sending you some soft

( ( ( ( ( H U G S ) ) ) ) )

and I sure hope that your electricity never goes out this winter.

Take care my friend -

Title: Re: What are your Worst Fears?
Post by: irish on December 06, 2010, 10:27:50 PM
This has been interesting reading, depressing, but interesting. I have always been such a worrier. The big thing was worrying that something would happen to me and I couldn't take care of the kids. My hubby traveled and was away from home a lot so I had lots on my plate. Well, all that I worried about then never came to pass---something we should all keep in mind when we worry. I am now 67, almost 68, and I still worry some but not nearly as much as I did.

My biggest worry is that I will die before my husband or that my health will be impacted to the point that I wouldn't be able to take care of him in his last days. He is 72 and has had a lot of health problems. The last ones being lung cancer and a stroke between Sept 09 and June 10. I will do much better at growing old than he will. He can't stand sitting around and he can't stand nursing homes and hospitals. My goal has been to be able to take care of him at home. I have a DIL that lives next door who is a nurse plus public health could help some.

I also worry that the lung cancer could come back with brain metastasis and that he could have another stroke with brain damage. The brain damage can make people very combative and mean and that can make caring for someone at home quite hard.

If I can make it through those problems I will be happy. I worked in nursing homes for 25 years so I know the drill and being a patient is not what I would want, but we can't change a lot of stuff in our life. Also, I am hoping that I never lose my hearing in my left ear or my vision. I love to read and I love to listen to the radio. Radio is just the best thing to cure loneliness.

However, if I do lose those things I know that I will be able to lay in bed and think about the days of my youth with my hubby and kids. I my brain goes and I can't think about those days---who cares cause I won't know--hopefully. We just can't sit and worry about some of these things. Another fear I have is to not be able to drive. I am hoping I can for a few more years.

I am wondering if those of you with parents who had Alzheimers know for sure that is what they had. There has been no way to tell except on autopsy. I am thinking that they might have some up with a blood test just recently. There are so many diseases of the brain that can appear to be alzheimers. Dementia is the big umbrella word that covers all the loss of cognition.

I guess that with all this being said I still think that no matter how bad things can get--and they can get pretty bad, it seems that we always seem to make it through in some way, shape or form. We can't change it and while we are able it is best to laugh as much as we can.

Frankly, I worry more about the economy and our nation than I do about hubby's and my health. The economy will greatly impact what happens to us if we become all we fear. So , time to smile and go think positive thoughts. This from a woman who spends all her computer time hacking and spitting mucus going on 11 years. Irish ;D
Title: Re: What are your Worst Fears?
Post by: flutterfly on December 07, 2010, 07:12:13 AM

cause due ta stress makin' flares worse it seems like every important celebration or event is WHEN MY BODY GOES ON STRIKE!
& i just trudge 'long tryin' ta still ~be there~ but eh one day (feels like it could be sooner than i want) i JUST WON'T BE ABLE TA BE THERE FOR ~ME~...

i"ve never had a normal life...was always the weaker/sicker twin! from the start i always was a sick baby & kid by the time i was 15 i had my 1st tummy surgery for endometriosis! then type 1 diabetic by 20 (durin' the 4th tummy surgery that 1 i lost my appendix & part female parts...didn't need 'em anyways!) then diabetic gastroperisis by 25...bursitis & arthritis by 27! oh don't 4get the agoraphobia & all the other random ailments that cum knockin' on my back door! 

i guess i'm just 'fraid 1 day i won't be able ta handle it anymore! :'(

~*flutterfly flitterin'in thoughts now*~
Title: Re: What are your Worst Fears?
Post by: Reanne on December 07, 2010, 01:06:35 PM
My worst fears are to die from lung issues.  I watched my mother suffer for years.  Since I've felt so short of breath lately, it makes me wonder if I face the fate as she did, slowly suffocating.  :(
Title: Re: What are your Worst Fears?
Post by: Loon-Lover on December 07, 2010, 02:10:46 PM
I totally agree with losing one of my children or grandchildren.

Another fear right now is not being productive. I have worked all my life, and for the first time I'm coming to grips with the fact that I can no longer do my job!

I have been back on disability now for 5 months, I'm seeing a therapist to help me thru this trying time. I will be appling for SSD and it really scares me.
Title: Re: What are your Worst Fears?
Post by: Lesleybird on December 07, 2010, 10:59:44 PM
   My worst fears are that I would be so fatigued and in pain by the Sjogren's that I could no longer work.  Running out of money when I retire. Having my husband become an invalid in his old age with alzheimers or something, or him dying before me. Often I feel so bad that I wish that I were dead to be out of my misery, I also fear growing old and not being able to care for myself, but I really don't want to die.  Lesley
Title: Re: What are your Worst Fears?
Post by: Meld256 on December 08, 2010, 03:56:05 AM
This is an interesting thread ...we all have fears of something.

Suppose my most recent fear is that my health will deteriorate to the point my husband would need to care for me. I know that he would gladly, but I don't want to put that burden on him.
Worse yet, would be his death or any of our 3 children's death. It may sound bad of me, but I may be able to handle losing him better than my kids. I don't know; he is my best friend and life partner.

It seems strange that some things I feared before, have come to pass. I dreaded a parent passing, and I lost my mother 3 yrs. ago after an awful illness. My husband lost his father, whom I loved like my own dad. Eight family members in 9 yrs. Several years ago, we feared job losses. Those happened...we feared losing our home and that happened. Our sweet only grandchild, Chloe, died at 13 mths. in 2008 after heart surgery. I believe that was the worst loss of all. But I've survived and still see happiness in life.

My husband's grandmother had a wonderful resilience. She lived to 93 yrs. old, and lost her husband at a young age and saw 2 sons pass before her. She survived colon cancer, and was in a wheelchair her last 5 yrs. She rarely complained and seemed that she understood change was a part of life, whether it was change that was good or bad.  She didn't own much, and she was happy with the life she had.  I hope that I learned just a bit from her how to see the beauty and joy that's in the world, no matter what my circumstances may be.
Title: Re: What are your Worst Fears?
Post by: Pegasus47 on December 09, 2010, 04:25:27 PM
My worst fear?  Having a sound mind, at least being aware and an incapacitated body. 

Remeber the story of One Million Dollar Baby?  Paralized and still can think?

For what ever it is worth, I am still trying to figure out how to die quickly and penniless.  This is a joke.  If anyone knows how.  Let me know.

Meanwhile, I am so thankful for I am capable and try to live in the moment- not easy!

Title: Re: What are your Worst Fears?
Post by: Sha on December 09, 2010, 08:17:11 PM
I've had several, but at this very moment...

1) losing my dad, twin, hubby or kids!
2) that I don't have enough info to get treatment for sjogrens.
3)getting diagnosed with another AI disease.
4) having one of my kids diagnosed with an AI disease.
5) not being able to continue to work in autism room cuz im not strong enough until retirement. Cuz I absolutely love my job, but it has very physical demands.
6) saying something that might offend someone on this board or getting kicked off cuz I have a twin.

Those are my newest fears in a nutshell!

Sha~who always tries to make everyone happy...huge job!;)
Title: Re: What are your Worst Fears?
Post by: Meld256 on December 10, 2010, 12:30:54 AM
Just reading through this posts and wanted to let you know I'm thinking of you. You've had a tough time of it! I truly believe, too, that many of these physical problems can arise from trauma and stress. I believe that happened with me.

I've had some tough years, too, lately and it seems a journal does help. Just a thought...but anytime you want to write away here, remember there are people who listen and care.
Take care of yourself,
Title: Re: What are your Worst Fears?
Post by: Nathan on December 13, 2010, 11:52:04 AM
I've been gone from around here for a while. The last time I was around, I had just gotten married. Well... that didn't last long, and my ex bailed on me. I've been on my own since then. Given my age and other life factors, my worst fear is being alone.
It's hard enough for normal people, then you add on chronic disease (being sick isn't sexy, unfortunately), the potential for a bad future outcome, depression, etc, and it makes for a tough time.

I'm back around here though, just in time for a new flare...
Title: Re: What are your Worst Fears?
Post by: mink on December 13, 2010, 11:46:38 PM
My worst fear is being a burden to my children and them seeing me suffer  :(
Title: Re: What are your Worst Fears?
Post by: Joe S. on December 14, 2010, 04:02:19 AM
Welcome back nathan. I am sorry to hear of your loss.

Mink a lot of us fear being a burden.
Title: Re: What are your Worst Fears?
Post by: Patze on December 14, 2010, 04:19:22 AM
Welcome back from me too Nathan, and I'm also sorry to hear about your marriage.

Take care of yourself, okay?

Title: Re: What are your Worst Fears?
Post by: Nathan on December 15, 2010, 01:02:15 PM
Thanks Patze and Joe. I try :)
Glad to know I always have somewhere to go where people will understand.