Author Topic: New and Scared  (Read 6409 times)

Velcro

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Re: New and Scared
« Reply #15 on: March 31, 2014, 11:12:40 AM »
Welcome.  Sending big hugs!

finallyadx

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Re: New and Scared
« Reply #16 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.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

machenza

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Re: New and Scared
« Reply #17 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

litliwlowa

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Re: New and Scared
« Reply #18 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
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

warmwaters

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Re: New and Scared
« Reply #19 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.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Thea

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Re: New and Scared
« Reply #20 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
Inflammatory osteoarthritis, dx Nov 2013, Secondary SS (sero-neg) dx Feb 2013, Type 2 Diabetes (diet controlled), Post-Viral Syndrome (lungs); Hydroxychloroquine, Restassis, Omega 3 oils, Optive Advanced, Biotene, fluoride gel, MI Paste

susanep

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Re: New and Scared
« Reply #21 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
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

machenza

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Re: New and Scared
« Reply #22 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

machenza

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Re: New and Scared
« Reply #23 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

machenza

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Re: New and Scared
« Reply #24 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

machenza

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Re: New and Scared
« Reply #25 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


machenza

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Re: New and Scared
« Reply #26 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


machenza

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Re: New and Scared
« Reply #27 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

machenza

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Re: New and Scared
« Reply #28 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

kimberly64

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Re: New and Scared
« Reply #29 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
Sjogrens, Evoxac, Restasis , Omega3