Author Topic: Scared  (Read 4443 times)

kcoffiner

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Scared
« on: May 23, 2008, 10:07:15 AM »
Sorry to post but I have been overwhelmingly sad today. I hate having Sjogrens, it is so painful. Does it get any easier with time. I just accepted a new job and was initially psyched but now I am so fearful. My docs have reached a standstilll in helping me. What can I possibly do. Any responses would be greatly appreciated as I am full of fear about the future.

Julie

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Re: Scared
« Reply #1 on: May 23, 2008, 12:34:02 PM »
Hi !
Sending you BIG {{{{{HUGS}}}} and a prayer that you feel better soon....Both physically and emotionally.  How long has it been since you were diagnosed?  It sounds like you may have more than primary Sjogren's going on if you are in that much pain..which may be a blessing in disguise.  If they can pinpoint what else is going on, it is very likely that it is treatable so that you aren't suffering so.  What type of pain are you having?  Are you on any prescriptions? 

I quit my job 2 years ago because it was such a crazy, busy doctor's office and I rarely got any help there.  The fatigue and stress level was not good for my health.  Now that I have been off, I feel I am ready to find something part time if I can work at a slower pace.  I feel better when I am out among the working world.  It helps the brain stay stimulated.   

Is your job full time?  Is there any way you can work fewer hours? 

I never know how I am going to feel from day to day, but as time goes on and you learn more about Sjogrens, you will become more in tune with your body and learn what NOT to do in order to wake feeling better.  Mornings are the hardest for me. 

I wish I could offer you more help. I've found the best way to feel better at times is to come on here and read what everyone has written.  It helps me to realize I am not alone and that we all care and are here for each other.  And try to keep in mind that while Sjogrens is not curable, it is not going to take your life.  And.. there are many things available to provide relief from your symptoms.  And..there's lots of research being done and I really believe that a cure is in the not-so-distant future.    :D

Take care!!
Julie
 

genko_b

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Re: Scared
« Reply #2 on: May 23, 2008, 01:12:53 PM »
You really are struggling with this diagnosis, aren't you? So sorry this has been so difficult for you.

In answer to your question, yes it does get easier. We become better at the whole routine of meds, eye drops and so on and can move on more efficiently to "getting on with your lives," so to speak. Each of us still has areas we are resistant to, for example, I have trouble with the exercises for my balance. Why is that? I can't answer that any better than I can say why I have a hard time cleaning my refrigerator. I just don't like to do it. But I try not to think about it a lot.

As far as fear of the future, when we look back at our lives, the things that worried us going forward are usually not the things that had the most impact on us. Those often come out of the blue and surprise us. Given that, I am a firm believer in not worrying about the future. I say live each moment as best you can, prepare as best you can for the future, and when you notice yourself worrying (that little conversation in your head), take a deep breath and come back to the present moment. And I have to do that dozens of times a day, but it really helps.

Take care, hope you are feeling better soon.

Genko

kcoffiner

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Re: Scared
« Reply #3 on: May 23, 2008, 01:16:08 PM »
Thank you for your reply. I have just primary Sjogrens with extremely, dry eyes. My eyes hurt all the time and limit what I do. I just felt so disgusted with them today. But thank u for the well wishes.

YICKelly

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Re: Scared
« Reply #4 on: May 23, 2008, 03:06:57 PM »
I am so sorry that you are in such pain.  How many eye drops do you use?  My doctor says I can use one every hour if needed.  Do you use one that you can use that often?  Your eyes sound as if they need help constantly.  Praying you can find some relief and that you will be able to work as needed on your new job.

kcoffiner

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Re: Scared
« Reply #5 on: May 23, 2008, 03:13:50 PM »
Thanks for your well wishes!

Joe S.

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Re: Scared
« Reply #6 on: May 23, 2008, 05:43:52 PM »

Try Reiki on your eyes. I use it to cut the pain, reduce stress, and restore my vision.
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salsen

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Re: Scared
« Reply #7 on: May 23, 2008, 08:43:52 PM »
Old FDR had it right when he said the greatest thing to fear is fear itself.  Why is that?  Because the constant worry of all the the what if's and what could happen will do more harm to you physically and more quickly than SJS.  My advice has always been to educate yourself as much as you can.  Read all the wonderful books out there on SJS.  Listen to your doctors but be  and active participant in your treatment.  You are the navigator.  You make the decisions on what treatments, you choose which ones to use and which ones just aren't for you.  The more you take the reins in your treatment the better you will be able to handle the fear.  Believe me you are stronger than you think.  Knowledge is power.  Even the simple knowledge that SJS  can make life miserable but it is not terminal.  That gives you strength to say today I will not be defeated.  My goal each day or simple - get out of bed - get out of my bed clothes - do at least on job.  Don't get me wrong, most days I achieve much more than that but on days when the fatigue and pain are high these simple goals do not make the day seem daunting.  Fortunately I do not have to work outside the home and I have a husband that understands me.  So on tougher days ( like this past week) do a few clothes , getting the dishes washed and a meal for supper is ok.  Nothing earth shattering but productive.  Keep your goals each day simple.  What gets done - give yourself a smile -  what doesn't get done, tomorrow is another day.  LOL  Look at it as an adventure on finding ways to do things in new and creative way that uses less energy.  We all have our tricks.  Good Luck  -- keep writing we all have been where you are.  Once  you   realize I guess I do have this and it is not going away ,  you will learn how to tackle it head on!

Shari

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Re: Scared
« Reply #8 on: May 23, 2008, 08:56:58 PM »
Sounds like you need to pamper yourself!!  A warm bath usually helps me when I am blue :( even tho I sometimes bawl my eyes out for the first few minutes! ::)

Have you used Restasis, the prescription eye drop? ???  Of course with that you still use moisturizing drops.  I have eye pain if I don't keep up the daily regime. 

I have Fibromyalgia also and it is hard to determine which symptom is from what but the eye pain is very disturbing to say the least.

The eye Doc will be able to help you tremendously with this.

Take care  ~~Shari~~

lynnmarie219

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Re: Scared
« Reply #9 on: May 24, 2008, 01:01:40 PM »
If it makes you feel better to write your feelings out here...please don't apologize for that...thats what we are here for! It's helpful to get it all out of our systems and then move on.......as long as you are able to do that!

Please see your eye Doctor again (ophthalmologist) and if he or she can not help you....maybe its time to look for a new one. Your eyes should never be taken for granted and if they hurt that much....you need to be seen and treated.....good luck to you!

susanep

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Re: Scared
« Reply #10 on: May 24, 2008, 06:50:39 PM »
It is scary wondering what all is going to happen or not, but it will get easier to deal with. It just takes time to heal emotionally from all this. It is a process. I hope your pain gets better soon. We all learn bit by bit what helps and what doesnt with the pain etc, and what we can do and what we can't.

I have learned to more appreciate the simple things in life. There is something nice to be said about that though as time goes on. Talk here all you want, it does help. A therapist once told me that writing down our feelings was good, because it is a way of getting them down to stick to something. So coming here knowing real people are listening is much better. We all care about each other, and understand.

Take Care
susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Sandra

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Re: Scared
« Reply #11 on: May 24, 2008, 08:07:25 PM »
I hear you too. I am sorry for your suffering, it really is no fun at all at times. How long have you been dealing? The best thing I can tell you is that I did and do better when I make friends with it. When it's really bad I let on it is a spoiled child only a mother could love. It seems then I can let go, stop fighting and take care of it/me. Things settle down much better that way.
Unfortunatley things have changed for you so you are entitled to grieve. Grieve all the way and then accept. Get help/counselling if you need to. Sorting out all this I found very difficult and I tried but I wasn't very good at it so I decided to leave it to the professionals, it is the single greatest thing I have ever done for myself. I feel whole again instead of in about what seems like to be a million different parts, one for each problem sjs patiants endure.
You will see it's really not that bad, life is good. Give yourself some time. Best of Luck, Sandra