Self as the disease

[Crabcakes]

Hi Everyone,

  In the months leading up to my diagnosis, and the 2 days since being diagnosed, especially after the diagnosis, I seem to concentrate on this diseaase. Will this subside? I don't want to become Sjogren's! I want to be ME, coping with this. Does this constant thinking about my pain and discomfort go away? The first thing I think of when waking is "I have Sjogren's, no wonder I hurt"

I sure hope this lessens, as it is not how I want to think. Yes I hurt, but I can't sit and rot! I want to deal and go on, but thoughts of the pain and where it hurts get in the way.

I DO do a lot to distract myself, and that helps. I do digital photo restoration and enhancement,  and yesterday I worked for several hours with a client, on chat, and I was able to focus on work, with just mild toughts of pain when it got very bad.

Wahhhhh, I am such a baby! Please someone, tell me as time goes on, I will adjust!

[dbab]

Hi Crabcakes,

For me, most of the time because I'm on a regimine of meds, my pain is mostly controlled and I am not reminded constantly about it.  I take my meds and it has now just become a part of my routine, just as putting on loads of sunblock, putting drops in my eyes, wearing hats in the sun and just basically pacing myself.  Is just things I do now, in the beginning I would always think to myself... I have to do all of this because of stupid Sjogrens (or Lupus also in my case).  And like you, before I had a diagnosis I drove myself crazy because it was all new to me and I didn't have anything to feel better, never had any hope of feeling better.

Now I do get down everyonce in a while like when I'm filling up my pill containers or when I can't go places because I'm too ill but for the most part I have adjusted my life and basically had to accept it.  It is very similar to the 5 steps of greiving (you are greiving your healthy self).  You will go through these steps and sometimes come around to others you have gone through already.

It sure does help to have support like this though because you have an outlet and you can get real EMPATHY.  So very important.

[Crabcakes]

Thank you dbab! You're very empathetic yourself, and a great comfort! I am so  happy to have found this place. I can see myself here each morning with my coffee! 

[fluffiebunnie]

I am undiagnosed and unmedicated and this Sjogrens thing fills my mind every waking minute... I am hoping when I get a diagnosis and medication it will all settle down in my mind... I am so desperate for treatment I cant think of anything else!!

[jonnell]

Crabcakes,  My 4 year old has SJS so I dont have the pain,  but the disease seems to take over our lives.  But I find the more I learn about it the better I feel and the more I can help her.  She is on Plaquinil and we are hoping her pain will get better.  I wish you the best of luck and lots of hugs and kissess are sent your way.    Jonnell and Jenna

[ohiolady]

Crabcakes,

In the beginning you have to grieve the loss of your health and the way things were.  I have severe dryness and so seeing people outside and carefree without weird looking glasses would make me so sad.  I had trouble eating because of the dryness and that is just a normal part of life.  And then by 5:00 pm my fatigue would be so bad that there was no way I was going anywhere.  But, now, two and a half years later, my outlook is much better and different and I don't think Sjogrens 24/7.  You will find the meds that help you to cope with your illness, you will accept your limitations and hopefully improve to some degree.  I have improved since my diagnosis.

Wishing you better days ahead.

Anna

[Crabcakes]

Thanks everyone! Your words are exactly what I wanted to hear!

[kathyl]

It took so long to come to terms with the fact that I was not going to get rid of this.  That each medication I am taking, I will take for the rest of my life.  They are very expensive so I was thrilled when Medicare began to pay for drugs or I would never have been able to retire.  I changed jobs so I get the summer and more times off.  I come home and take a nap every day - I sleep through Jeopardy.  I wake up in time for the final questions then everyone is home by then and we all try to guess the answer.  I use to never watch TV, now I need it to keep me resting in the evenings.  I use an umbrella outside which really helps.  I live in Arizona and everyone says what a good idea when they see me with the umbrella.  It is leopard print and kind of cute.  I get up early and go outside then and in the early evenings.  My husband  will be in the Middle East and I will visit him there next summer and I am starting to think a burka is a great idea.  So like everyone else, I had to change my life and find new things to do and be excited about.  I was really upset when I had to go on Klonopin but I sleep great now and it increases salivation, so my doctor made a great choice to put me on it for neuropathy.  I do get down when I think about the future.  My doctor says I am so healthy otherwise that I will live a long time and I was hoping to die young...ish.  Anyway, good luck and hang in there.
KL

[Redetha1]

I  went through a period that I thought about Sjogren's all the time.  It was a time of grief...I think we grieve for the loss of the old self before we accept the new self and what we will need to deal with.  Keep coming here and you will find much information that will help you.  Hugs to you.  Redetha

[jpd54]

My husband and I  both thought I was falling apart before my diagnosis.  The unknown is what is scary.   Now that I know what it is, I have been trying to learn everything I can about it. I am new to this site, but it seems like everyone here knows even more than some of the rheumys.  I don't like to think about it all the time but I do.  I just want to know what is going on and what to expect.  I also want to be more than the disease.  Hang in there!!!! 

     jpd

[susanep]

It will get better, but I was the same way. I can still have those times sneak up on me. I take one day at a time. I learned that the hard way. Being medicated doesn't take it away, but makes it bearable. Well, some days can still feel unbearable, but I know that I will .

Everyone here does understand. Everyone here is helpful. The understanding means everything too.

Redetha,  I don't have your email now, because I had the address on my laptop that went down. So I would like to hear from you if you still have mine. If you want it just message.

Take care everyone.

susanep

[TerriJ]

I hear what everyone is saying.  It took five+ yrs. of dry eyes, one year of feeling weird and another year of being a mess, but I guess now I have a diagnosis.  Have I accepted it?  Not yet.  I'm still working on that.  If I'm careful about getting enough sleep, eating healthy, stretching/moving/mild exercises, keeping stress under control, setting boundaries etc., etc. then I find some improvement.  I also have found a lot of help with my physical therapy, meditation and low dose of meds.  I still get up in the morning, look in the mirror and wonder who is looking back at me.  Where did the person who I think is "me" go?  Someone on the board said that you have to think of it as a new you.  Still you, but different.  I will say that in all of this I have found a deeper spirituality in myself and I'm thinking about what is important in life.  Not sweating the small stuff I guess.  It's a process that I am working on.  One thing that has stuck in my head for the last six months is that 2 yrs. ago my husband bought me snow shoes for my birthday.  I love trekking around in the mountains in the winter.  I wonder if I will ever be able to go out and really use them and be active the way I used to be?  I'm not giving up even though some days I want to.  I don't yet know how to separate myself from this "syndrome."  I also have other AI's, but this, this has knocked me off of my feet and changed my life.  I'll work it out somehow.  Being able to come here has helped a lot.  It helps to not feel alone in this.  Another kind of strange thing is that I never ever thought I would be a person dealing with chronic pain and fatigue.  I mean who does think that this will happen? I just never envisioned my life going that way.  Maybe I took just feeling normal for granted?

We'll make it somehow.

Terri

[Patze]

Hi Crabcakes,

I'm glad to see that you've been diagnosed with SJS, being sero negative is a pain in the buns!  I understand the "shock" you're in, it will get better for you, maybe not tomorrow, maybe not next week, but it will sink in a bit.  And the others are right, it's still you, just a but a bit different.

And I sure hope you get to use your snow shoes again!  If you do, take some pictures, I'd love to see you in your "shoes"!

Take care -

Patze

[Lesleybird]

   The things that have helped my pain are Lyrica and Cymbalta. I really think that Lyrica saved my life as often I have sooo much chest and other body pain that I have honestly thought about killing myself...and I am not depressed....just have horrific pain. The Cymbalta has helped me to not toss and turn all night as it helps my body relax and not be so restless. Cymbalta is also used to help generalized anxiety...found this as a nice side benefit. I also take ibuprophen along with the others, and started on Plaquinil a couple of months ago. Don't be afraid of these medications you need something for the pain and these are the best for treatment of fibromyalgia that a good portion of us with Sjogren's have. My doctor says that about 80 plus percent of his Sjogren's patients have fibromyalgia with it.   Good luck, and don't think that you can't deal with it because if it the hand that you are dealt you must deal with it you have no choice. Don't worry too much as there we are all trying to deal with being chronically ill in our own ways. I do feel that I have been robbed of some quality of life, but I still work and cope the best that I can and you will too.                     Lesley

[Crabcakes]

Thanks everyone for the comments and encouragement. I have done some serious thinking. I have decided NOT to let this get me too down. Yes, I hurt, and can't live like I used to. I;ve made some small adjustments and they make me happy!

Even though for over 2 years I have had pain and trouble doing things, I did not make adjustments, thinking it would go away one day.

My Splurges and Adjustments This Week

:)I can't lift the dishwashing detergent box from under the sink, so I poured it into two plastic drinking bottles with handles. I was going to toss the bottles due to th eplastics scare. Now I can easily lift a bottle and unscrew the cap!

I placed a folded up towel alongside my bathroom sink, allowing me to lean on it to get up from the toilet. (Yeah, THAT has gotten hard to do)

I splurged on $40 Crocs Rx Relief shoes. Not ordinary Crocs, but these are like walking on clouds and cushion my feet from our tile floor. Google

                                            " Crocs + Arthritis + Rx + relief"     

The Crocs site is out of stock (!!!) but other sites have them. I LOVE them and will order another pair next month!  IF you decide to order, Google "promo code" and the name of the site you plan to buy from. I found a code for free shipping! Sweet!

My shoulders KILL me when hooking and unhooking my bra. I ordered 2 front-close bras from Penneys. Have not gotten them yet, but the thought makes me happy!

I got the guest room pillows out and have about 6 pillows now on MY bed, propping me up some and making a cushy nest. Easier, some, to roll over, and helps with the gastric reflux.

Small things, that have made an enormous difference in how I cope! Amazing how these have made me happy!


I am NOT Sjogren's / Lupus /Fibromyalgia. I am me coping with those distractions! I think I will make it!