I really hate Sjogrens Syndrome.....

[Parched]

Wednesday I was having what I will call a self pity party.  I kept thinking about how tired I am of my new life with Sjogrens, Tired of having to take naps just to get through the day, anyways, long list of all that I am tired of since Sjogrens invaded my life.

Anyways, Yesterday(Thursday) I laid down for my much needed noon nap and within 10 minutes my electric went off.  Then a few minutes later I was hearing one emergency vehicle after another. I live in a rural area and could tell they where close.  I live on a private road about 1 mile long with wooded lots and only 12 homes.  I live at the end of the road, so I decided to drive up the road to check on my neighbors.  At the top of our road is a beautiful large log home and the couple both have health issues.  What I came upon was the top floor of their home was totally engulfed in flames.  Their house burnt to the ground in 45 minutes.  Because we live in a rural area there are no fire hydrants close by so pumper trucks bring in water.  All the fireman could do was control the surrounding area around the home, due to all the trees they did a good job. 

When the firemen arrived the home was so bad they could not enter the home to make sure no one was in there.  Thankfully the couple was not home, by the time we could reach them by phone there home was totally gone. Their two dogs were not able to be saved.

I was up there until after 4:00pm, The police had our road blocked off and I had to be there when my sons bus came he and one other girl on our road are both in high school. But the scene was so bad I couldn't let the two kids see that without an adult there.

I do not know how I pulled out the energy to get through yesterday, but I hurt physically today, worse then any other day since Sjogrens invaded my life.   

Yesterday I gained some perspective on my life, I realized my life could be worse, BUT I Hate this disease even more today than I did two days ago.

I realized the best thing I did for my self after being diagnosed with a chronic illness was seek out a psychiatrist to help me deal with my life changes..

The best part of Yesterday was when I logged on here and we had heard from Joe.  I needed his reminder to BREATH, and just hearing from him reminded me of that.

Thanks for reading my story, and I just wanted to say this is the best place ever.  Sjogrens World is essential to my well being as my psychiatrist is.  So Thanks to all who participate in this site.

Have a Safe and Blessed Day

Parched [/b]

[Carolina]

Oh dearest Parched,

Of course you hate your disease!

How weird to love it, or even like it.

But you are learning to make peace with it, and to get the help you need to take good care of yourself.

I always think of emotional health help as just like getting any kind of physical therapy, or even like going to a spa to soothe your entire self!

We all need things and people to help us through life.   And to remember to breathe, and to stay in touch with our emotional, spiritual, mental and physical needs.

This forum is a life saver, for it helps me to share and learn from others.

Hugs to you Parched.

Elaine

[Liz D.]

Parched,

I feel so bad for that couple to have lost their home and theirs pets.  But thank goodness they are safe.  I am sure the stress of watching that has affected you and that is one of the reasons you are feeling sicker now.  After I get very upset, I am always down for a few days afterward.

I also want to say that I totally agree with you about this forum.  It is a lifesaver and does great things to help our mental status.  I don't post often, but I read this forum several times a day and feel like I know everybody.  It helps so much knowing we are not alone and that we really are not going crazy!!

Thanks to all!!!

Liz D.

[mshistory]

Add me to the list of Sjogren's haters but Sjogren's World lovers 

BTW, I also hate the name Sjogren's "Syndrome." I think it's time the medical community or ACR or whatever is responsible for naming these diseases changes the name to Sjogren's disease. Perhaps it would be taken more seriously as a disease (which it is) if the "syndrome" were dropped.

[Katybarstool]

Parched

I'm not suprrised you are feeling so bad today. What a horrible experience for you to see. Your neighbours must feel blessed that they were out of the building, but terrible about what happened to their beloved dogs.

Sending you a hug.

Kathyx

[gardenlover]

Wow, that is terrible about the home and pets!  My husband is a fire-fighter and it is always so hard when something like that happens.  You always feel so helpless!

You know, this disease has had positive impacts for me as silly as that sounds.  It has relaxed my personality a lot.  In the past I used to say I had a "Type A" personality.  My friends and family would always correct me and say, "no...you have an A+ personality".  For example, after getting a full-time teaching job, I did a double-masters degree full-time while being pregnant with our daughter.  Needless to say...life was busy. 
This disease has made me slow down and enjoy most moments.  I've learned not to sweat the small stuff and appreciate the little things more.  For example, my daughter came home with mealworms the other day that her science teacher had given her (she is in grade 2).  She wanted to keep them until they turned into beetles.  In the past I would have never let her keep them in the house (it is too could for them outside yet).  However, we built a little home for them in the kitchen and she just thinks that is the coolest thing in the world.  There, in our lovely kitchen, sits a "cage" with mealworms.  My mom came to visit the other day and couldn't believe it.  She said, "wow, you really have changed."  We were always so busy and now that I'm home off work, I can sometimes play a game with our little one after school or she can read to me.  It is great!  Before, I was seldom even home from work by supper time and always had to bring school work home with me.  In that way, it has been lovely.  The pay and illness stinks though!!  We actually had to have the real-estate people out to the house today to give us an idea of what we could list our new home for.  We just built our "dream home" last year and now we may have to sell it.  If I don't qualify for LTD we'll need to sell.  That is a very sad prospect!!  We were planning on staying here "forever".

[Luna]

Dear Parched. That would have put me down for days also. I do understand how you suddenly mustered the energy to handle things. It is called Adrenaline.. Once its over though, you will be drained/ exhausted, and in pain. At least that is what happends to me.
I feel for your neighbors. That is a horrible tragedy to deal with. I hope they can get past this quickly. Thank goodness they were not home.
I learned a long time ago (before this Sjs hit me) to appreciate the positives in my life. Someone once told me to focus on those more than the negatives. It helps. Some days I am upset, mad, depressed about this illness. But I believe what keeps me from going into a deep depression is the fact that I do recognise the good things n my life. I remember some people have it worse than I do. That doesnt mean I flit around all happy all the time.. But I believe it does help me cope..
Dear Garden lover, I was so like you, and have changed just like you..  My family is liking this change.
I had to change. I could not physically keep up with it all. And I realise how precious our time is and want to enjoy more of it.

Luna

[Belsey1]

Parched,

I agree with Luna...adrenaline.  About a month ago my 12 year old grandson became seriously ill and was transferred by ambulance from a local hospital to a major medical center with a pediatric childrens hospital.  Of course, we all rushed to the hospital.  I spent about 12 hours there, standing sitting, walking, worrying, pacing, etc. 

At last, they found the problem, treated him and he began to show immediate improvement. (he has made a complete recovery....praise God).  On the way home, I couldn't help but think how I had made it through the day with no pain, no noticeable SJS symptoms at all.  The next day I went to work (a Friday) and somehow managed to make it through the day.  That afternoon when I got home, I crashed and spent the whole weekend in bed...terrible pain, weak, you know the rest....

All I could contribute my pain free day at the hospital to was adrenaline.

[harlin]

Parched,
I am so sorry for your neighbors, what a horrible thing to happened.

I would like to join you in your "Pity Party". That way you will have company.
I Hate It Too!

Of course you were worse the day after. I am always worse when I have an upset. That is just how it is. I just know that I will be down for awhile.

Please be good to yourself and rest, rest. It does help.

Love and prayers, harlin

[lostone]

I;m not positive,, but I seem to think a lot of us here are type A,, nurses, professionals, tradespeople,, every oneof us needing to use our brains more so then using a cash register that has pictures of what your buying on it,
Maybe type A people do get more AI diseases, ,but I know this,, its hard being on the outise looking in, seeing what we used to be,, were not our illness,, but it sure as heck is a big part of it,, how can it not be when it not only affects us,, but our friends and family, I still get the look from family when im hobbling around almost in tears,, when tehnightbrings nothing but pain from every part of my body, no its not fun,, I miss the old me,, i really do,,and I was a fireman once, saw my share of misery and fatalitys of what a fire can do, still dream about it once in a while,, but i;m glad the people got out ok,, and if you dont have a smoke detector,, get one,, same with a CO detector,,

[Parched]

Thanks to all..  I am still in a lot of pain and swollen hands.  Have hardly been out of bed since Thursday night.  When the swelling goes down in my fingers I will respond to all of the posts, i appreciate them all so very much!!

I was suppose to taper prednisone this weekend but putting it off until I am feeling better.

Wanted to say how much I appreciate and respect all emergency workers.  My thoughts are with all of them who responded from all the neighboring towns.  I couldn't believe how many where here and alot of them are volunteers.


My husband tells me everything that collapsed into the basement is still burning.

I'm a type A personality, always been the one to take care of and do everything.  This is taking me for ever to type my hands will not cooperate.  I will post soon, when my fingers are willing