What do you feel Sjögren steal of your life?

[Lou]

Hi Everybody:

I feel that this illness stole not only energy, it stole me opportunities to make a lot of proffesional things to have a succesul career; to have chance to travel to a lot of places, to have energy to do all the goals I dreamed when I was young, to be more thin and beautiful and not to feel stressed by the pain caused by Sjögren, to know that I don´t have the chance to be loved because nobody wants a sick person and the most important thing of all: to feel understanding for all these people that are healthy and don´t imagine what means to suffer it.

Thanks for reading.

[Joe S.]

I do not blame sjogrens as much as I blame auto immune diseases. All the hours in doctors offices, all the tests, all the worry. This is past and cannot be replaced.

My dreams of things I wanted to do. Most I have had to let go. That has been very difficult. I used to love time in the sun, spring and fall. I miss canoeing, camping, and BBQing outside. As things progressed since an accident in 1983. I have stopped doing a lot of things. Learning to live with limitations is the task infront of me.

Our 2014 trip to the west coast posed some interesting challenges. Sun block, AC, and side screens on the windows helped to reduce UV light. So did HD sunglasses.

[Lou]

You are right Joe S. Not only Sjogren, any of all the auto inmune diseases.

[eye2dry]

 
What my sjogrens and RA took from me...

being spontaneous-I have to prepare "my stuff" I need to go anywhere.
(sugarless gum,bottled water,sun hat,eye drops, SUN BLOCKect...)

avoiding places I use to go and enjoy- beaches, long car rides, gardening outdoors, no
more bike riding...it hurts my wrists,
(I can't get too hot, no sun on my skin even with sunblock)

spend too much time sleeping/resting- precious moments of life trickling
through the hour glass...wasted on rest but I can't help it....I never feel rested

retired from my dream job of nursing early......I am too disabled to do it safely
and effectively.

Feel I have to explain why I am this way and why I have limits- even close
family look at me and forget what's wrong with me at times.
Asked "did you hurt your leg? foot? by others and I would then explain why I
limp.  Now I lie and say  "yes, I did"  it's so much easier.

Gave up crewel work, embroidery, cut way down on reading d/t my
dry, gritty eyes that burn

HOWEVER.........

I am glad to be alive.

Glad to have gotten disability the first time around
and I can rest myself however long I want and as often
as I want.

My immediate family understands and my husband is
very supportive. Initially he thought I should try harder,
get more exercise, more sleep. my kids ask how am I.

I have numerous feeders and bird houses outside my sunroom
and I can watch them.

My lap top is important to me.


so, it ALMOST balances out


shelly

[Scottietottie]

Hi 

I know where you're coming from, but if Sjogren's hadn't cropped up - something else may have. I have a friend who has reasonably good health - but I wouldn't swap my life for grief that has gone on in hers.

No one knows what's round the corner so I reckon, as we only get the one shot, we just have to make the best of what we are dealt.

I try to concentrate on what I CAN do - rather than what I can't. Way before I got a dx I was finding bringing up 4 kids a tad tiring, so instead of doing activities with them - I encouraged them to take up activities that I could watch them doing. I regret never being able to climb a mountain with them - but it didn't stop them being able to go and climb them if they wanted to.

Take care - Scottie 

[quietdynamics]

I have had one on one talks .. away from home.. so I could have their "full" attention.
I needed to talk to my children, now young adults, as this disease hit when they were young.. and I was their only parent.
It hurt my heart that I could not be fully there, as I once was, when they needed me most.. those adolescent/teen years are so stressful, more so in these times. So many ways trends, judgements are pulling at them.

Not having a Dx.. or reason, yet 'knowing' something was not right was in itself stressful.
I adapted for myself and children as best I could.. no more hiking .. but we had a great time making cones from newspaper and then collecting wild raspberries. Joining the lake in summer, even though strangely Mom wasn't jumping in the water that summer. On and on.

Then came the symptoms of waking in the morning and feeling as tired or more so than when I went to sleep. Hip and leg pain, other things. Coming home from work and literally crashing.
Being told by GP .. you are a single Mom with a lot on your plate.. you are depressed.
Hmmm.. I felt mostly impatient to get back to who I used to be for myself and my children.. we used to always be out and about.
I had students born with disabilities,  some never walked, some non-verbal, etc. So I mistakenly quantified and dissected my symptoms into oblivion and kept counting my 'blessings'.
Rationalizing, positive thinking is sometimes a distraction.

Before I hit the wall I met DH..taking him to outdoor concerts, here and there.
Suggested he buy a motorcycle (he had one prior). I only got on a few times.. before I 'hit the wall'
And was literally bouncing off hallway walls when I would wake in the morning.
Finally researched. Got to teaching hospital on my own and a DX.. then shocked that I was deemed 'disabled' without jumping through hoops. I cried.. naively told Dr. "thought you were going to cure me. I have things to do.. like getting a PhD."  I had a one on one talk with DH and he did honestly confide he 'missed the old me and felt bad for me'. Difficult to hear.. but, our relationship is based on openness. DH has insulin dependent diabetes and heart bypass... so I thought I would be taking care of him in the future.. lol. Now we watch each other. A true match. And both Pieces.

So life is a road.. the journey has twists and turns.
One door closes, another one opens.. up to us if we step through it.
I am blessed that I worked with students born with disabilities.. will never dance, do tricks on a bike as they are in wheel chairs. Not sing outloud, as they are non-verbal, not give a socially acceptable belly laugh or smile without cues as they have autism/Asperger.

Travel: I had wanted to re-visit Europe. Not likely now. Ahh.. there are so very many places here in the states, and within driving distance that I have not ventured into.
Career: Ok.. I am looking at Hospice volunteer work. We also help with our young granddaughter.
Relationships: I do not believe there exists anyone who is 'perfect' and there may be someone wishing/thinking the same as you.
Understanding: I do not believe that when I was healthy I could have really 'understood'.. so I do not expect understanding about an experience that is realistically beyond the realm of healthy persons. And since I do not care for sympathy nor pity.. I tend to keep my symptoms for my doctors.

Energy/Isolation: Hard to do things when not feeling well and not feeling well can set off a downward spiral.
Hard as it is .. it really is important to get out and walk. Over and over I see exercise noted under management for illness. I am looking at the free yoga classes @ library. DH had leg surgery due to diabetes.. so he needs to walk to help circulation, etc.

It really does help help to journal problems and then list some possible solutions, alternatives, adaptations.
 

[Lou]

Many thanks each one who reply my post.

I admire your positive choosen to handle this situation. I am not able right now to handle as you. Maybe some day... maybe when I don´t feel so alone...

Hugges from Spain 

[juliechurch]

Sjogrens Took my pretty skin, hair,and perfect teeth away

  But it made my moms and me closer now we understand each other and we never fight

[Deb 27]

You know, I started writing and I kept thinking of things that it took from me and I honestly didn't want to write it all down. It was too much. I'd rather say I am grateful that it isn't any worse and while it's bad, I can still work and do some of the things I enjoy doing. I can't go to aerobics class anymore or do all the physical things I once did.  I have friends who are athletic and I think I miss that the most. I was once in great shape and I've put on almost 80 lbs since all this hit me. I also got fibromyalgia which may have impacted me more than the SJS.......

It has helped me to be more understanding of people with disabilities and aging bodies........

[SjoDry]

Lou,

Like others have mentioned here, I try to focus on the here & now blessings. For me, I have spent my entire life sick, so it is normal for me. I have found that connecting with others (Sjogren's support group and this forum are greatly helpful. I also started to write about my journey with Sjogren's. It was just a way to get my thoughts about Sjogren's (good, bad or ugly) out. I never dreamed that anyone would read it & identify with it. But writing can be very therapeutic.

And also, maybe consider talking with a therapist. I have seen others on the site mention that there are therapists who specialize in chronic illness patients. We do have our own special unique issues with chronic illness. Sometimes talking it out with a therapist can help. They are skilled to ask the right questions.

You sound depressed (and rightly so). Sjogren's can cause it's victims to have organic depression (one of the symptoms) and we can also experience situational depression. It's not that we haven't all felt what you're feeling..we have just found ways to try to lift ourselves up. And as you know...that is a day-to-day struggle we all face.

I hope you soon feel better.
SjoDry

[aussie mum]

My daughter was diagnosed at 17. I think due to SJS and other AI illnesses she missed out on or has lost:

1) A year of her life due to depression
2) University Education
3) Travel
4) Many social events
5) Spontaneity

[susanep]

I could at this point go on about a lot of things, but the biggest things taken from me were my energy, and due to that robbed me of more time with my dad who is confined now to the nursing home. I pray to someday be able to do more in my house. I won't give up on that.

Hugs,
susanep

p.s. I also as a result of what was taken from me am more humble, more aware of little things, and how they are really big things. I don't take anything or anyone for granted. Most of all my faith is the strongest it has ever been. Not being preachy, but just saying for me that I no longer just know God, but have a real relationship with him. He is my best friend, with my husband being my second best friend.

[sunflower]

Yes, each day is a miracle.  I, too, find that my faith has been strengthened with this diagnosis.  So that's something that's been given, not taken.  I feel so blessed that I don't have to come up with hope and strength for each day on my own.  I have Help, from my Creator.

What has been taken from me?  It's hard to be sure:  My fatigue has increased, I am achy and sore, and I have more uncertainty.  Where will this take me?  How bad will my symptoms get?  I don't know.

Without my faith I would be devastated.  But I know that because of my reliance on God, all things will work together for good.  And that includes the hard stuff.