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Sjogrens Topics => Living With Sjogren's => Topic started by: machenza on March 31, 2014, 02:37:19 AM

Title: New and Scared
Post by: machenza on March 31, 2014, 02:37:19 AM
Dear Friends,

I am a 45 y.0. female, and am just starting on the difficult path of coping with what we have. Since it happened so fast for me, I am still in the disbelieve phase, and cry every day. I constantly go back to the first night that I woke up with super dry mouth and throat, and the weeks before that and wonder could the outcome have been different if I never had done what I did at that time. Could I have somehow prevented, or delayed the onset of it all?

 Today, only a short time since it all started, I have everything dry and seem to be getting drier by the day: My sinuses, my throat, my eyes, my scull, my skin, and my lips. Also I wake up (if I even sleep) with pain in my left kidney now. It is getting harder to eat, swallow or get hungry. Since, I am somewhat in the medical field myself, I know that I have to eat a minimum of X amount of calories, but I keep losing weight. Everything tastes so sour and different. Is that how it is for all of us?
I was so stupid in my choices?Worried about work, education, money, even looks. Now I know what is important but I do not have it to enjoy life as I could have.

I already have an IC, and allergies, and GERD, and I am not officially diagnosed yet because I am in Japan, and work for the military. However, we do not have any specialists here, and I will have to somehow see a specialist. At the moment I have to deal with OTCs, and hope that the ?drying? will slow down until I am given something. I saw on many of your posts that almost everyone is starting with a quinine derivative. Unfortunately, I had a bad adverse reaction at age 4, so I have no idea if I can even try. Is there anything else I can try as an attempt to slow the progress?

 Any help , and advice will be dear to me. I am so confused, sad, angry, helpless, and discouraged?please, teach me how to live as a Sjogren.

Machenza

Title: Re: New and Scared
Post by: litliwlowa on March 31, 2014, 02:57:46 AM
Hi machenza and welcome to the boards.

The first things in your post that really stood out to me:
Quote
I constantly go back to the first night that I woke up with super dry mouth and throat, and the weeks before that and wonder could the outcome have been different if I never had done what I did at that time. Could I have somehow prevented, or delayed the onset of it all?
Not even most of our doctors understand these AI's fully, let alone how to prevent them from happening in the first place. So I would have to say, no to "could I have somehow prevented, or delayed the onset of it all?"

Quote
I was so stupid in my choices?Worried about work, education, money, even looks. Now I know what is important but I do not have it to enjoy life as I could have.
Take a deep breath, okay? Rule #1: no such thing as a stupid choice. Rule #2 Worry is a stressor, worry will also keep you "stuck" and add to your symptoms.

I'm going to PM you with some questions, okay?

Amanda

Title: Re: New and Scared
Post by: machenza on March 31, 2014, 03:09:30 AM
Thank you Amanda,

I just saw the post of another member that everything happened in her life, and in less than 5 months she lost taste and saliva 100%. I am so scared because I am progressing so fast as well. I hope to hear from members that started of with fast drying, and how to handle the change.

 I thought that I was a strong person. Now I know that I am not

Nellie
Title: Re: New and Scared
Post by: litliwlowa on March 31, 2014, 03:52:48 AM
Nellie

Just sent you a PM.

First and foremost, as scary as your symptoms are, AI's are stress-sensitive. What that means in effect is that the more you allow yourself to be scared and second guess your life choices, the more it is going to add to your flares - as those are controllable stressors.

Now let's put an element of control into the situation. If you haven't started this yet, I would suggest start journalizing your symptoms. A consistent theme with autoimmune illnesses is flares and triggers. It's hard not to get scared, I "get" that. So turn that scaredness around into determination to sort out what is triggering the symptoms for you. Some is controllable, some is not controllable.

Dry mouth: three S's of Sjogrens: sip, swish, swallow. I always have water with me 24/7. I also find zylimelts really helpful. I am also on cevimeline (generic for Evoxac) for dry mouth.

Dry eyes: many OTC products on the market. Don't know what you have access to, and you may have to try different ones to find what works best for you. I do best on Refresh Optive dual action during the day and Refresh Sensitive PM ointment at night. I am also on Restasis.

Dry bum: I have other issues there including pelvic floor dysfunction. I am on stool softeners (3 at night) and 2 capfuls miralax at night also to keep things moving alone so to speak.

Dry nose: room humidifier (cool mist) and now doing sinus rinses.

Stomach/GERD: on Dexilant and Zantac for that. Plus have had to eliminate spicy foods (so my diet is quite bland actually), eliminated gluten (as much as one can anyway), eliminated corn (as much as can anyway) and soy (nearly impossible to eliminate that one) - all three are problematic for me. Diet is an individualized issue. Also went organic as much as is possible.

I am also on RX hydroxychloroquine (Plaquenil) for roving pain issues.

I'm certain you'll hear from other sjoggies as well with what has been helpful to them.

Keep in mind that there is no road map that fits everyone. Some of us have horrid flares that seem to never end then like flipping a switch we get a "break" and symptoms abate. Some of us are less symptomatic than others. There is no "one size fits all".

Just know that you're not in a boat alone in the ocean, we're all in the same boat - just rowing with our own oars.

Hugs and Prayers

Amanda
Title: Re: New and Scared
Post by: Joe S. on March 31, 2014, 04:31:41 AM
Wearing a mumps scarf over nite helps with dryness issues.
Title: Re: New and Scared
Post by: Carolina on March 31, 2014, 05:29:39 AM
Welcome dear Nellie,

1.  Relax.  Learn relaxation and meditation techniques.  These will help you with everything.

2.  We are all different in many ways.  There is no way to know what lies ahead for you, with or without Sjogren's.  What each of us posts is our own view of what we are experiencing and we have things to share.  Take what you need and leave the rest.  Most people with Sjogren's don't seek out online support. 

3. Use this new experience to enrich your life, Nellie.  You didn't choose this path, it isn't your 'fault'. It is what it is.  Acceptance is key.   Patience, Persistence, Acceptance.

Hugs,  Elaine
Title: Re: New and Scared
Post by: kimberly64 on March 31, 2014, 05:40:52 AM
Mechenza,
When I read your first paragraph I cried.  You are essentially me.  Then I read the second and we are the same. Dont let this define your life, it is hard and I am still sturggling each day since this all started 7 months ago for me but I am trying to learn to cope and function normally as I can.  People here will help you get through this and have advice and insight on ways to cope.  Please take care and if you need to talk just PM ME.
Kimberly
Title: Re: New and Scared
Post by: quietdynamics on March 31, 2014, 06:51:59 AM
Hello Nellie and Welcome to the forum.

(Nellie was my Grandmothers' name ~.~)

Having something, anything 'go off' with our bodies, especially when not a quick fix is unsettling, and can be very stressful.

The "catch 22" with SJS and many other disease states is that stress exacerbates symptoms, emotionally drains us and so affects us physically. Contributes to a cycle of wellness.

I wrote out my concerns, basically named them, claimed them and then address them..

Getting a handle on chronic illness stress has helped symptoms.

A diary of symptoms, when, how long, helps identify triggers, so you can make lifestyle changes within your control. And help specifically address symptoms with Drs.
Include in diary things that alleviate symptoms..out in fresh air symptoms are better? During the day?
These are telling things, that will help show patterns.

Waking with extreme dry throat.. can mean (for me) that during the night I have been doing open mouth breathing because my nasal passage is 'funky". Do a saline levage helps and added humidity in the night, lowering dry heat in bedroom.

So while we tend to look 'within' due to fear.. we must also look objectively at our immediate environment. (and sometimes we learn.. say due to harsh winter.. other folks are having dryness symptoms. Although not as extreme.)

Hormonal changes can produce similar 'sicca symptoms' so they should be checked.
SJS "mimics" other disorders, thus, difficulty in initially recognizing.
When I have a new, different symptom, I have said to Drs. "Let's not put that into the SJS box of convenience." 

I do not know if military is referred out for medical specialists.
There are studies I have read on Sjogrens from Japan. Japanese pop. has a unique profile and markers.

Please remember that the majority of people who post often here are in minority.
Think of SJS as a spectrum..
Some people having Antibodies and no symptoms ---------------> all the way to people with more complex symptoms and other Dx's to boot ( about 20%)-----------> and then there are even smaller % groups.

I have had some taste changes, dryness changes, etc. they go up and down. Nothing carved in stone.

Keeping hydrated with about 2 liters/+ of water is suggested. I use thicker eye drops at night and then eye gel to seal in the drops. I have a simple crock pot going (safe) near the head of my bed. Easy to clean.. no mold, etc. ( I can add a scent, spices too..lol)

Having had a quinine reaction at age 4.. this would be something to discuss with a Dr.
Dose then, Rx and age? vs age and Pharma now?  So do not leap to rule it out.
http://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarial-drugs/
Title: Re: New and Scared
Post by: littleone on March 31, 2014, 07:48:51 AM
Sending support from all of us to you.  Just to echo everyone else's sentiment, stress definitely exacerbates things.

I'm a big believer in music therapy. For me, taking deep breaths to peaceful music can really calm my body down. Right now I am into Native American flutes and waterfalls. If you just plug into youtube you can find almost anything that suits you.

Conversely, if I sit and worry I almost always feel worse. Or if I have an argument with my Mom (bc she isn't dealing w her med problems) or meet a jerk for a dr (there seem to be a good few out there) then, again,  feel my symptoms flare. 

I also try to listen to comedy on you tube. Laughter is good for the immune system.

It's scary in the beginning but know we have your back.

 ;)
Title: Re: New and Scared
Post by: litliwlowa on March 31, 2014, 08:54:49 AM
Quote
I'm a big believer in music therapy. For me, taking deep breaths to peaceful music can really calm my body down. Right now I am into Native American flutes and waterfalls. If you just plug into youtube you can find almost anything that suits you.
So am I a big believer in music therapy. The Native American flutes and waterfalls I find particularly soothing.

Title: Re: New and Scared
Post by: Tivia on March 31, 2014, 09:31:36 AM
Mach, believe me when I say there is nothing you could have done to change this really. Like you mine came on extremely fast, I dried up seemingly overnight. I think doctors dont believe it can happen that fast, sure we may be harboring the illness for years, but its quiet. Then some people slowly notice changing, and others get hit fast and hard. I think its that sudden change thats the hard part, over time I can adjust to about anything. But when it spins you for a loop in a matter of days, its very hard to adjust. I think over time we catch up to the disease and adjust, but it takes time.


 Another thing that literally shakes me to the core, is the fact that without the meds I cant function, so I am dependent on them forever. Makes you scared about what if you cant get them anymore, or cant afford them, or they stop working...my god what would you do then.
Title: Re: New and Scared
Post by: Richards1953 on March 31, 2014, 09:40:47 AM
I'm brand new too - just found this board a couple of days ago and have already found it so helpful.  I'm afraid I'm with you - I have only worried and been in denial over this for the last two weeks.  we were snowbirding down south for the winter and the dryness just got worse and worse - had to come home to Canada early to see dr. as medical insurance wouldn't cover anything in the U.S.  We live in a small town and I will have to go into the City for any medical  help.  I don't know how to relax or meditate - I normally hike 4-5 times a week with our dog!  I have a huge garden and quilt.  I am so stressed and don't know where to turn and I just keep getting dryer and dryer. I think we need to slow down listen to these people on this forum.  They seem to KNOW.  I'm sorry this hasn't helped you - I think I just want you to know that there are lots of us newbies out there and I empathize and am going through the same thoughts and feelings as you. 
Title: Re: New and Scared
Post by: Tivia on March 31, 2014, 10:24:03 AM
I'm brand new too - just found this board a couple of days ago and have already found it so helpful.  I'm afraid I'm with you - I have only worried and been in denial over this for the last two weeks.  we were snowbirding down south for the winter and the dryness just got worse and worse - had to come home to Canada early to see dr. as medical insurance wouldn't cover anything in the U.S.  We live in a small town and I will have to go into the City for any medical  help.  I don't know how to relax or meditate - I normally hike 4-5 times a week with our dog!  I have a huge garden and quilt.  I am so stressed and don't know where to turn and I just keep getting dryer and dryer. I think we need to slow down listen to these people on this forum.  They seem to KNOW.  I'm sorry this hasn't helped you - I think I just want you to know that there are lots of us newbies out there and I empathize and am going through the same thoughts and feelings as you.


Richard has your doctor prescribed exovac/restasis yet? I would get started on that as soon as possible, and have an eye doctor do a Schirmers test,  http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/schirmers-test/
The sooner they start you on meds the more function they may be able to save.  http://eyeworld.org/article.php?sid=4924
Title: Re: New and Scared
Post by: Thea on March 31, 2014, 10:53:40 AM
Hugs to you. I'm new to all of this, too, and totally *cheesed* that my life has gone upside down. Yoga and meditation are helping me with the mental side of things.

I second the suggestion to start a health diary. Stepping out of yourself to "observe" has helped me put it in perspective, and is usual information when you talk to all the "ologists"!

I bet you are a heck of a lot more resilient than you imagine at the moment. There's nothing wrong with an anger/grief stage. But there is a life beyond the diagnosis, and you will get there.
Title: Re: New and Scared
Post by: Thea on March 31, 2014, 11:12:28 AM
Thanks so much for that link to the eyeworld article. I didn't know starting restasis sooner rather than later made a difference. This board is so darned helpful ... I'll get into the eye guy asap--he kind of left it up to me.
Title: Re: New and Scared
Post by: Velcro on March 31, 2014, 11:12:40 AM
Welcome.  Sending big hugs!
Title: Re: New and Scared
Post by: finallyadx on March 31, 2014, 01:25:01 PM
Machenza - welcome to the forum.  So very sorry to hear you are scared, confused and so concerned.  AI's are serious business and not to be taken lightly.  You will find the folks on this forum helpful, informative and very supportive - know that you are not alone in this.

Plaquenil is often the first line of defense with sjogrens - have you seen a rheumatologist yet?  Sorry for some reason my computer screen is only showing other folks responses but not your original post so if you already have answered my questions, my apologies.

Plaquenil can take up to six months to truly feel some difference so if you are taking it and have just started - do not give up.  I take it with a meal to avoid stomach/gi distress.  And you do want to see an opthamologist for a baseline exam of your eyes and then once every 6 months to a year for follow-up as plaquenil can (rarely) cause damage to your eyes.  There are certainly other options available - I think I remember now (sorry brain fog today! :() that you said when you were younger you had a reaction to quinine related products - some folks on this forum take methotrexate and other medications.  But you need to discuss options for you with your healthcare provider(s).

I use the OTC items for dry mouth, dry sinuses and dry eyes.  I use biotene products for dry mouth and have tried medactive as well.  I use saline sprays and flonase now for chronic, recurrent sinus infections and dry sinuses.  I use otc refresh for my eyes.  I have an appt next week with my rheumy and I plan to ask for evocax or salagen though because I am having some difficulties with my salivary/parotid glands. 

You did nothing wrong to make this happen to you - there is nothing you could have done differently that would have changed the outcome.  The best you can do now is grieve your losses as they come, find your new normal and work with what you have and can do each and every day. 

Others have given you some great, sound advice.  Now is the time to focus on you and try to take care of yourself and make yourself feel better as much as you can.  Rest when you need to.  Do not overdo. 

We are here for you.

Keep us posted.  Sending positive thoughts your way.
Title: Re: New and Scared
Post by: machenza on March 31, 2014, 03:15:08 PM
Dear Friends,

From the bottom of my heart, Thank you, for the warm posts and the advice. I am still figuring out how to manipulate the forum, when I do so I will be able to answer/post personal messages too. I am on Okinawa, so I am in time opposite from you, and will be posting 12-14 hours late.

I just want to ask if anyone else like me is ANA negative, although everything is dried out? It will be so hard to get to a specialist here, and If I understand correctly the Asian markers might be different.

Thank you for the advice on keeping a log, and taking it day by day. It is so hard to wrap my head around it, so I guess the fact that I am sad, confused and scared is making everything worse.

P.S. As soon as I get out from work, I will be back here to learn more. Thank you all SO SO much

Nellie
Title: Re: New and Scared
Post by: litliwlowa on March 31, 2014, 03:30:19 PM
Nellie

I am ANA negative. Actually, I just saw rheumy today and he has ordered a new test for early detection of sjogrens on me. I don't know how long it will take for results to come back, as it's one that gets sent out.

Amanda
Title: Re: New and Scared
Post by: warmwaters on March 31, 2014, 04:39:12 PM
So sorry to hear that this has hit you so hard and so quickly.  My onset was also very quick, and it's a startling thing.

Right now, a lot of the emotions you're having have to do with trying to make sense of your life.  For example, the idea that maybe if you had done differently, you wouldn't be having these problems, is kind of a way to say "If I knew the right stuff, I could have prevented this".  But the truth is no one is quite sure what causes Sjogren's, or even exactly how it's related to other autoimmune problems.  So it's not your fault - you couldn't have prevented it.

And the "what next?" questions.  Another way of trying to gain control!  I have always been the planning and list making kind of person, and I didn't handle the change very well at all. I became unable to work rather quickly and unexpectedly, but kept thinking that if I just did one thing or another, I'd be back to my usual life.  Some people can get treatment that helps them have a close to normal life, and others can't.  And there's no way to know what things might work.

One way to try to deal with all of this is to not try to deal with all the possibilities all at once.  So you might want to focus right now on getting the right doctors and short term treatments lined up. You've gotten some good advice on some of the things people are using to help with their symptoms.  And cross the bridges about what if I can't work, what if I can't do things I enjoy a bit later.

I know what I'm saying is easier to SAY than to DO.  If someone had given me that advice when I was first diagnosed I wouldn't have paid much attention to it.  But now, looking back, it is a useful strategy for dealing with stress.

BTW, do you have any friends or family nearby that you can talk with?  It's very easy to try to be brave and not tell people, but it can be a comfort to talk with people who care about you.

Title: Re: New and Scared
Post by: Thea on March 31, 2014, 06:41:36 PM
In answer to your latest question, yes, I'm ANA negative. To look at my blood work you'd think I was the healthiest person on earth!  ;D
Title: Re: New and Scared
Post by: susanep on March 31, 2014, 08:31:11 PM
Welcome to the board. I am so sorry for all of these things you have to deal with.

 It is like one said that it is better to concentrate on one thing at a time. I have the very dry eyes. When I was first diagnosed I remember the doctor saying I could use the eye drops up to 4 times per day.

I would usually put some in my eyes in the morning after I would get out of bed, and then again before I went to sleep. Then I started looking at my bottle to see how  many times I could use them so I used them 3 times per day, and later finally the 4 times per day.

Well, now I don't look at how  many times anymore. I use them all during the day many times, and I even have the punctal plugs in my upper eyes.

I have been on the plaquenil for years now, and was also diagnosed with fibromyalgia, so I take neurontin for that. I have gerd so take a pill for that, and a aspirin at night.

I was later diagnosed with lupus, so things kept adding on for me. My worst symptom that disturbs me the most is the extreme unrelenting fatigue.

I have a gallbladder that dried up per x-rays. I have had kidney infections since I was a teen, but have one now that has went on for 5 months now without clearing up.

I go to the pulmonologist this Thursday for  my second visit after he diagnosed me with asthma and lung problems.

This week my regular doctor is getting me an appointment to the endocrinologist to find out why I have not been fully through menopause at 60, and have been bleeding like I use to on a full period for about a month now.

I know another woman who use to come to this board who had sjogren's and never went beyond dry eyes, and mouth, but had plenty of energy always going somewhere.

So it is very individual, at varying degrees for everyone.

susanep
Title: Re: New and Scared
Post by: machenza on March 31, 2014, 11:38:28 PM
Hi Susanep,

Thank you for the long post. Another dry day has gone by at work for me. I had to talk for 90 minutes and now everything is so dry and sore. I can see that you are retired teacher. How did you manage teaching when you were still at work? It was what I loved doing and now I am scared that I have another class tomorrow. I will miss talking. I am sure it was hard for you to stop doing what you loved just like most people in our forum. I hope that through your experience and interaction I can learn to like life again,

Neli
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 02:18:53 AM
So sorry to hear that this has hit you so hard and so quickly.  My onset was also very quick, and it's a startling thing.

Right now, a lot of the emotions you're having have to do with trying to make sense of your life.  For example, the idea that maybe if you had done differently, you wouldn't be having these problems, is kind of a way to say "If I knew the right stuff, I could have prevented this".  But the truth is no one is quite sure what causes Sjogren's, or even exactly how it's related to other autoimmune problems.  So it's not your fault - you couldn't have prevented it.

And the "what next?" questions.  Another way of trying to gain control!  I have always been the planning and list making kind of person, and I didn't handle the change very well at all. I became unable to work rather quickly and unexpectedly, but kept thinking that if I just did one thing or another, I'd be back to my usual life.  Some people can get treatment that helps them have a close to normal life, and others can't.  And there's no way to know what things might work.

Thank you so much for your kind words wormwarers. I wish the universe was not so unkind to us, and we could just be normal.

machenza
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 02:22:38 AM
Wearing a mumps scarf over nite helps with dryness issues.

Hi Joe,

What is a mumps scarf. I got a box of medical masks and that is all I use at night.

I saw in other posts that you have a different approach at this. I will be glad to hear more. Can I, please, send you a message,

Nellie
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 02:27:50 AM
Welcome dear Nellie,

1.  Relax.  Learn relaxation and meditation techniques.  These will help you with everything.

2.  We are all different in many ways.  There is no way to know what lies ahead for you, with or without Sjogren's.  What each of us posts is our own view of what we are experiencing and we have things to share.  Take what you need and leave the rest.  Most people with Sjogren's don't seek out online support. 

3. Use this new experience to enrich your life, Nellie.  You didn't choose this path, it isn't your 'fault'. It is what it is.  Acceptance is key.   Patience, Persistence, Acceptance.

Hugs,  Elaine


Thank you so much Carolina,

You are amazing in the way you handle this. I have a lot to learn on this (apparently) unavoidable path in my life. I am only a short time in, and it is so unpredictable, so I will often be looking for wisdom and support from all of you.

Nellie

Title: Re: New and Scared
Post by: machenza on April 01, 2014, 02:35:59 AM
Mechenza,
When I read your first paragraph I cried.  You are essentially me.  Then I read the second and we are the same. Dont let this define your life, it is hard and I am still sturggling each day since this all started 7 months ago for me but I am trying to learn to cope and function normally as I can.  People here will help you get through this and have advice and insight on ways to cope.  Please take care and if you need to talk just PM ME.
Kimberly

Hi Kimberly64,

Thank you for the support. Right now it is truly heat to imagine how this will not define my life. Although I have several other issues, until the night that I wake up with extremely dry moth and throat, I was perky, busy, and a go-getter form sunrise to sundown. Now it is even hard to explain to my husband that I am no more, and the new me will never be the same.  Knowing myself, I will even try snakeoil before I surrender to the reality. I hope that you, and everyone else here can put up with me, and help me stay sane.

Nellie

Title: Re: New and Scared
Post by: machenza on April 01, 2014, 02:38:38 AM
Quote
I'm a big believer in music therapy. For me, taking deep breaths to peaceful music can really calm my body down. Right now I am into Native American flutes and waterfalls. If you just plug into youtube you can find almost anything that suits you.
So am I a big believer in music therapy. The Native American flutes and waterfalls I find particularly soothing.

Thank you, I will definitely do that Amanda
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 02:46:02 AM
Hello Nellie and Welcome to the forum.

(Nellie was my Grandmothers' name ~.~)

Having had a quinine reaction at age 4.. this would be something to discuss with a Dr.
Dose then, Rx and age? vs age and Pharma now?  So do not leap to rule it out.
http://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarial-drugs/

Thank you for all this wonderful  information. I wish I could act on it right away. Sometimes in the jst-in-time era we want everything to go fast, and resent things that slow us down. Dryness in my mouth drives me crazy, and scares me too. If you have any ideas or suggestions for that I would give it a try.  I will also hope to convince someone to try me on the antimalirials as well. 

Nellie
Title: Re: New and Scared
Post by: kimberly64 on April 01, 2014, 05:54:17 AM
Mechenza,
Yes we are the same.  One day I was loving life and the next I was spiraling out of control into ill health.. I was loosing my taste and had neuropathy all over, doctors couldnt  find anything. Then the dryness set in and it spiraled from my mouth to eyes to nose to throat to skin to ears and I lost so much weight.  My quality of life is not so good.  I am lucky to work at home for a small company. My husband is very supportive and the reason I am still here  because other family do not understand.  I found some products that give comfort and Evoxac is helping a little.  I use humidifiers at night to sleep and it helps  I try to get out and walk my dogs, two golden retrievers, with my husband and that helps me feel normal.  Each day is a struggle to get through Mackenza I will not lie but I am told with acceptance, patience and time things get better.  This is all very new to me and I thought I was a strong person too but when something hits you like this and there is no cure you feel helpless.  Please take care and yes we will put up with you every day!
Kimberly
Title: Re: New and Scared
Post by: quietdynamics on April 01, 2014, 06:26:11 AM
Did the medical masks helps?  I was thinking about those.. ;)

When I was in the classroom I was always sipping water.
You can do a search on foods that promote saliva.
And I would have 1/2 a stick of sugarless gum with xylitol in my mouth .. store and chew.
Chewing promotes saliva.  The Wrigleys' brand has information on their site about 'Dry mouth and xylitol.
But, the dry emery board feeling tongue is annoying.
I would also need to get to classrooms early to air them out.. they heat running all night was extremely drying and fatiguing for me.  You know it turned out the students loved the room air out also and performed/felt better.

Sipping Carbonated drinks, such as Club Soda thins out the mucous..

During lunch I would take a walk and get some fresh air as well.
Exercise even a 10 minute walk increases wonderful neurotransmitters in the brain.. for free..lol  And if you can walk with headphones for music.. even higher level. Let your arms absorb sunlight for vit. D.  Our bodies are wonderful in what they can do.

It is very difficult to not be 'human' and be concerned, stressed by all of this but, again, the stress adds to the degree of the symptom. Writing out your fears puts them into perspective, instead of letting them become overwhelming.

Ophthalmologist appt to check your eyes and importantly create a baseline.
Dental appt to check ALL oral health.  I take Salagen, there are other meds.

Plaquinel is strongly reported to slow the progression.. so first line of defense.

And often symptoms do abate.. so keep the diary and learn your pattern, triggers.
The goal is to make the highs and lows as level as possible. Then we adapt.

As a teacher you are often figuring in your brain how best to help students  ..  use those skills on yourself.

Sometimes we need to "Breathe"  You could download that older song "Just Breathe" nice song.
In for a count of 3 slowly.. out for a count of 3 slowly.
Working with students you are probably doing this anyway..lol

Towards the ends of teaching I was blessed to work with students with severe medical conditions, some the effect of a trauma. And they had such a sense of humor. A few passed before adulthood or even their teens.
They are my 'reality check'.





 
Title: Re: New and Scared
Post by: SjoDry on April 01, 2014, 09:32:53 AM
Machenza,

I know you would have to check into your military coverage, but I found a Sjogren's Syndrome Clinic at a University in Japan.
Perhaps you would be able to be seen at the university, because your illness is a specialty that the base does not have staff for.

Obviously, their website is in Japanese. But you might be able to find an English-speaking Doctor in their clinic.
Can you find a friend to help you translate (or perhaps you are Japanese speaking). I think it would be worth it to go to the Univ.
& take a friend who can translate vs. seeing someone on base who is not a Sjogren's Specialist.

JAPAN
Japanese Sjögren’s Association for Patients (JSAP)
Division of Hematology and Rheumatology Department of Internal Medicine
Nihon University School of Medicine
30-1 Oyaguchitanimachi
Itabashiku Tokyo 173-8610, Japan
Phone: +81 (0)3 3972 8111 Ext 2402 (Dr Masami Takei)
Fax: +81 (0)3 3972 2893
Email: numtakei@med.nihon-u.ac.jp (Dr. Takei)
Email: sjogren@med.nihon-u.ac.jp (Ms. Yamanoi)
Website: www.maeda-shoten.com/sjogren

Hope this is some help to you.
Good Luck.

SjoDry
Title: Re: New and Scared
Post by: Richards1953 on April 01, 2014, 01:25:58 PM
I'm brand new too - just found this board a couple of days ago and have already found it so helpful.  I'm afraid I'm with you - I have only worried and been in denial over this for the last two weeks.  we were snowbirding down south for the winter and the dryness just got worse and worse - had to come home to Canada early to see dr. as medical insurance wouldn't cover anything in the U.S.  We live in a small town and I will have to go into the City for any medical  help.  I don't know how to relax or meditate - I normally hike 4-5 times a week with our dog!  I have a huge garden and quilt.  I am so stressed and don't know where to turn and I just keep getting dryer and dryer. I think we need to slow down listen to these people on this forum.  They seem to KNOW.  I'm sorry this hasn't helped you - I think I just want you to know that there are lots of us newbies out there and I empathize and am going through the same thoughts and feelings as you.


Richard has your doctor prescribed exovac/restasis yet? I would get started on that as soon as possible, and have an eye doctor do a Schirmers test,  http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/schirmers-test/
The sooner they start you on meds the more function they may be able to save.  http://eyeworld.org/article.php?sid=4924
Title: Re: New and Scared
Post by: Richards1953 on April 01, 2014, 01:33:52 PM
Dr. has me on pilocarpine - one week today - and no saliva yet.  Seeing eye doctor next week.  Live in Canada - no exovac here!
Title: Re: New and Scared
Post by: litliwlowa on April 01, 2014, 01:57:33 PM
Dr. has me on pilocarpine - one week today - and no saliva yet.  Seeing eye doctor next week.  Live in Canada - no exovac here!
Is the generic Evoxac available in Canada? That would be cevimeline.

Pilocarpine only worked for me about the first three weeks on it, by the 4th week did not work at all. Then my rheumy switched me to cevimeline and I do much better on that.
Title: Re: New and Scared
Post by: meow on April 01, 2014, 02:49:47 PM
Hi Susanep,

Thank you for the long post. Another dry day has gone by at work for me. I had to talk for 90 minutes and now everything is so dry and sore. I can see that you are retired teacher. How did you manage teaching when you were still at work? It was what I loved doing and now I am scared that I have another class tomorrow. I will miss talking. I am sure it was hard for you to stop doing what you loved just like most people in our forum. I hope that through your experience and interaction I can learn to like life again,

Neli
I am a teacher, too. You learn to space out the talk time. You learn to not talk for the whole class time. Sometimes you have to, but you learn to not do it 2 days in a row.I used to hate test days, but now I love them.
Title: Re: New and Scared
Post by: LucyD on April 01, 2014, 05:29:41 PM
Hi Machenza,
Welcome and I am very sorry you have been hit with this suddenly.
I hope you are doing better.
I am ANA negative too, but my rheumatologist said I definitely have Sjogrens.
My dryness became bad pretty suddenly - woke up with my eyes glued shut from crusting mucous and they hurt and watered like crazy.
Hugs to you,
LucyD
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 09:45:28 PM
Hi LucyD,

Thank tou for writting to me, I have a long road to go to seeing a specialist. I do not know if I will reach abetter mental state, byt having a dieagnosis and a person that knows about the condition will be nice.

Nellie
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 09:51:58 PM
[ Another thing that literally shakes me to the core, is the fact that without the meds I cant function, so I am dependent on them forever. Makes you scared about what if you cant get them anymore, or cant afford them, or they stop working...my god what would you do then.
[/quote]

Tivia,

I have those srairy thoughts as well. Since we are only to get worse, what will be if we cannot find meds or cant use what is available. I am allergic to quinine, and may be paquinil, so from the get go I am one hope for sustaing the condition less  :'(

Nellie
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 09:57:05 PM
I'm brand new too - just found this board a couple of days ago and have already found it so helpful.  I'm afraid I'm with you - I have only worried and been in denial over this for the last two weeks. 

Hi Richards,

It is good that you saw someone. I am yet to get the xylomelts in the mail, but so far the gum is hard on me. It makes my mouth even dryer and becuse my taste is going crazy too, it has a sur taste as well. Did you figure out somenthing that works for you?

Nellie
Title: Re: New and Scared
Post by: machenza on April 01, 2014, 10:28:16 PM
Did the medical masks helps?  I was thinking about those.. ;)

When I was in the classroom I was always sipping water.
You can do a search on foods that promote saliva.
And I would have 1/2 a stick of sugarless gum with xylitol in my mouth .. store and chew.
Chewing promotes saliva.  The Wrigleys' brand has information on their site about 'Dry mouth and xylitol.

 I take Salagen, there are other meds.

Plaquinel is strongly reported to slow the progression.. so first line of defense.

And often symptoms do abate.. so keep the diary and learn your pattern, triggers.
The goal is to make the highs and lows as level as possible. Then we adapt.

As a teacher you are often figuring in your brain how best to help students  ..  use those skills on yourself.


Thank you for all those wonderful sugestons quietdynamics. I managed to line up few appointments but not eye doctore yet. Days and weeks seem so long now. I remember being alweys in a hurry, strange how all that changes. Thank you for reminding me to go out and move. Lately, I am hiding in the house and do not even go for my favorite walks anymore. I have to try that again.

Paquenil seems to be the most helpful defence and I with my luck cannot take it.....
I hope that I can try Salagen soon. May be the ENT will have mercey over me next week

Nellie