Author Topic: New and Scared  (Read 6514 times)

quietdynamics

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Re: New and Scared
« Reply #30 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'.





 
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

SjoDry

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Re: New and Scared
« Reply #31 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
« Last Edit: April 01, 2014, 09:48:39 AM by SjoDry »
Sjodry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Richards1953

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Re: New and Scared
« Reply #32 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

Richards1953

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Re: New and Scared
« Reply #33 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!

litliwlowa

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Re: New and Scared
« Reply #34 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.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

meow

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Re: New and Scared
« Reply #35 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.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

LucyD

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Re: New and Scared
« Reply #36 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
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

machenza

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Re: New and Scared
« Reply #37 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

machenza

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Re: New and Scared
« Reply #38 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

machenza

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Re: New and Scared
« Reply #39 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

machenza

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Re: New and Scared
« Reply #40 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