Author Topic: Hello  (Read 4926 times)

4Kids

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Hello
« on: May 20, 2011, 02:03:20 PM »
Hi,

I am 35yo.  I got a virus over Easter which turned into having no tears or saliva.  It was quite severe with a couple of bacterial infections (strep, sinus) and then has petered off into dry eyes and a painful, thrush-filled dry mouth.

The opthamologist I saw gave me Dexamethasone eye drops and Restastis but my GP believes my saliva glands (submandibular?) is plugged so will not give me  anything to make more saliva.  I had a stone come out and feel "pearls" under my tongue, have no idea if this is common or not.  I have infected salivary glands--a few hours off the original steroid (prednisone) and the antibiotics the swelling came back, with a hot pain in my parotid gland.  So am now on Eurythomicyn (sp?) and waiting to see an oral surgeon since that gland is kidney  shaped and stickng out of my neck.

I have 4 small children, and am quite upset as I find my life has changed so much. I was diagnosed with PCOS which flared after my mother's cancer and death 3 months later, followed by the worst winter of my life settling the estate and dealing with issues and family. And now this.  I am a great cook and baker and I can barely taste anything, and my mouth and teeth are so sore I can hardly eat anything.  I've lost 20lbs in one month from the difference in eating.  I have a terrible case of thrush which I tried to treat with GV but 2 weeks of GV every day several times a day hasn't got it so I got some diflucan but only 150mg x 2 doses 4 days apart so am not too sure if that will help.

I am not sure if this is the right place for this lengthy post. If not, nice to meet you all and I sincerely hope this is viral-related and will go away like most of the doctors hope it will.  Any advice/reassurance would be great.  If it is permanent, do you go through cycyles of good and bad times?  What helps?  Does it stay like this forever? I have to say, that is my biggest fear.  :-[

Thank you.
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Pisces24

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Re: Hello
« Reply #1 on: May 20, 2011, 04:48:10 PM »
Back when my partroid gland was very swollen the specialist I saw said if this third antibiotic didn't work, she would recommend flushing the gland.  Evidentially you can get a blockage it in.  Hopefully with you they can just flush it.

I got thrush from the antibiotics I took too. I also developed tummy problems and am now taking a probiotic called FlowGen 3 which I keep in the fridge. It really helped the tummy.  When I don't feel good or am stressed, I don't eat right either and lose weight.  I don't have the weight to lose though. If you keep having dry sinuses, I would recommend sinus flushes - it is easy, not icky to do and inexpensive and helps a lot.

I can understand somewhat your stress. I was the caretaker to my folks for many years, only child, and their passing was very hard on me. A few years after they passed the SJS problems came up and I had to learn to be an advocate for myself - which was very new to me.  I KNOW us gals tend to put everyone else first and ourselves down to maybe 21st place. We have to learn to put ourselves at least in the top 5 or 10.  Allocate yourself some me-time. Doesn't have to be a long time just quiet time to: listen to music, read a magazine, etc.

Also, don't let you imagination drive you crazy. Deal with your health issues when you have to deal with them. Don't let it take over your life and be your "identity". You are sooo much more than that!
Good luck and keep us posted on how you are doing.

Joe S.

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Re: Hello
« Reply #2 on: May 20, 2011, 05:53:21 PM »
4KIDS, welcome to the forum. Pisces24 has some good advice in her post.
Thrush seems to be the place to start managing your symptoms. Here are a couple of alternative treatments from my website. You may find the purple stuff helps also.
http://www.chakraforce.com/Salt.html#Thrush
http://www.chakraforce.com/Tonations.html#16.

You may find reading "spoon theory" to help with the ups and downs.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Try sleeping with a polar fleece mumps scarf to help reduce the swelling in your glands.
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Rachel F.

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Re: Hello
« Reply #3 on: May 21, 2011, 04:32:29 AM »
Hi!
This is a great place to post. First, there are better times and worse times as for most people- especially at the beginning-

Second, try to re-post your question and use a question in the subject line. I think you will get a lot more replies that way! There  are hundreds of people that read the posts if they have some experience in topic on the subject line.

I have had trouble with not being able to taste and smell in the past and it is better now. I still think I am not as sensitive to flavors, but it isn't as bad as it was before! Also- I have no idea if this is appropriate for you- but I use Biotine Mouth Spray when I feel the slightest irritation in my mouth. But I don't have thrush etc. I just think it helps to keep the PH in balance better so once you find strategies like that that help prevent things you will be in a better way.

It is a lot to deal with but I think you will find (as I have) that there are so many people walking around with serious diseases like MS etc. and we have no idea about it! It is difficult at first and then it will get better as you learn your way of coping. Keep us updated. I have two young girls-- it is tough to be a mom and try to deal with your own issues too. Do you have friends who can support you? Finding some support is a huge help.

Rachel F.

Carolina

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Re: Hello
« Reply #4 on: May 21, 2011, 07:34:32 AM »
Dear 4Kids,

Welcome to the forum.

I'm sorry you're having such a terrible time.   The sort of problems you are having just drag you down: the pain, confusion, medications, changes in taste (very difficult), and so many visits to doctors and learning a myriad of new possible conditions and causes.

I hope you get some stabilization and relief soon!   With so much going on you need space to sort it out.

I imagine your children are all still needing lots of attention, too.   My heart goes out to you.

Joe suggested you put your question in the topic title.  You can also search this forum, by putting the key word(s) in the search space, such as parotid, or the name of a drug, or thrush, etc.

Then you can see what others have  posted on these topics.

I hope that this passes entirely, when all of the infections and side effects of the medications clear up.

The group here is very very knowledgeable and the experiences are wide ranging, because so many different parts of the body can be affected by Sjogren's and Sjogren's type conditions.

Keep us posted on how things go for you, 4Kids.

Hugs

Elaine (aka Carolina)


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Rachel F.

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Re: Hello
« Reply #5 on: May 26, 2011, 02:30:30 AM »
Hi 4Kids--
How are you doing?
I just wondered if you have an update for us.
I hope you are OK. I have been thinking about you. It is a lot to have four little ones to care for on top of health issues.
Rachel F.

quilt4fun

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Re: Hello
« Reply #6 on: May 26, 2011, 07:50:22 AM »
Hi 4 kids,
   I know the frustration. Keep asking those doctors questions, and if they can't find answers, ask for a referral to someone else.  Be your own advocate, don't give up.
   Theratears are good for those dry eyes.  They are not prescription, come in a package with several little tubes; preservative free.
   Although I don't deal with mouth issues, I do feel for you.  I will pray for you to find a little peace and answers to your many questions. Take care .Give those kiddos a hug.
   
    quilt4fun
Age 64. PSS, Gerd, Kidney stones,  dry eyes, dry skin, borderline high cholesterol, osteoporosis. lung scar tissue,  Taking:  Plaquenil, Meloxicam, protonix, potassium citrate, fortical ,calcium+D,  Lovaza , genteel jel and theratears liquid  gel,    medrol and lacriserts

4Kids

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Re: Hello
« Reply #7 on: May 27, 2011, 09:37:17 PM »
Thank you everyone.

I am ok. No saliva yet and a few tears from the Restatis, I hope. I am also on Dexamethazone eye drops.

Things here move slowly... not even a surgeon to check the gland yet. Submitted bloodwork, and will have the GP refer me to a rheumatologist next week if I get any +s.  Referrals here take up to 12 to 18months, but there is always a chance that I may get in quicker. I feel a bit sad that it is so uncomfortable in my mouth. I can eat eggs and a few soft veggies.  The weight loss! My dh is teasing me he kinda likes Sjs.

Anyway. I would be ok if I had saliva and no thrush.  I have a 2-week course of Diflucan but it hasn't budged yet.

Thanks for asking  :)
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Rachel F.

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Re: Hello
« Reply #8 on: May 28, 2011, 03:53:36 AM »
Hi 4Kids,
There are a bunch of people on the site with yeast problems-- so know you are not alone on that front.

Let us know what the bloodwork shows. Also, many people on this site don't have positive bloodwork but do have a diagnosis of sjs. They were able to find a rheumatologist who would use other methods to obtain a diagnosis or treatment. I believe it says on the US sjs foundation web site that  about 75% of patients have positive blood test results.

I hope this thrush gets under control for you. Please be persistent with your doctors-- I hope you don't have to wait for a year to see a rheumatologist! It sounds like you GP has been helpful, so that is good.

For me, it has helped to make sure I do things I enjoy once in a while which decreases my stress. Stress definitely seems to make things worse for me. I like to connect with my friends. I also give myself permission to nap whenever I need to (when I am not at work of course!) and that has made me a lot happier then trying to push through a miserable day just because I don't want to give in. Not sure you could do that one with four kids!

It sounds like you are going through a very hard time and I just wish I could do something to help.
You need a good neighbor, and it would be so great if you had someone living next door to you who could  bring you some soft food and watch your kids while you nap.  :)
If not, come and post and we will try to keep you company during this difficult time.
Take care,
Rachel F.






Patze

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Re: Hello
« Reply #9 on: May 28, 2011, 05:48:21 AM »
Hi 4Kids,

Let me also welcome you to the SJS World and family!  Please look around as there are many topics that you might find helpful in the ether's by using the search engine located in the upper left hand side of this page.

I see that the others have given you good information and theres not much that I can add other than to say that I'm sorry that I have to meet you this way, but I'm sure glad that you've found us!

Take care and I hope that you feel better soon -

Patze
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4Kids

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Re: Hello
« Reply #10 on: May 28, 2011, 06:40:10 AM »
Thank you :) I have searched a few things already.

No, no neighbours or friends that can help out.  Our family lives 3 hours away and the only one capable of handling all 4 was my Mom.  We don't even have childcare -- we've never needed it before.

I get upset because my interests are mainly in cooking and baking. And now my mouth either hurts too much or my taste is off. So that is very upsetting. It is who I am--I am the MomChef.  If I get saliva back and no thrush, I am hopeful I can get back to eating like I want to.
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Joe S.

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Re: Hello
« Reply #11 on: May 28, 2011, 04:18:58 PM »
Is MomChef going to be the new Mrs. Fields?
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

4Kids

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Re: Hello
« Reply #12 on: May 29, 2011, 07:25:38 AM »
ha! i wish!  ;D  I need to taste thigns first!!!
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