Author Topic: My Intro  (Read 2867 times)

gmomjuju

  • Full Member
  • ***
  • Posts: 202
My Intro
« on: February 02, 2011, 09:05:37 AM »
You all have made my day.  I really feel yucky today and decided to to a little browsing for a blog to help.  I became very ill in the fall of '08.  Horrible cough - on 2 antibiotics with no change. Was sent to an ENT who used prednisone which helped just a wee bit.  After I came off of that I ended up in the hospital for 3 weeks and 1 week of rehab. I had been intubated 2X while in hospital. Thought was double pneumonia.  After antibiotics did not work - prednisone began to help.  Still no diagnosis.  I had awful skin.  Three months later I had lung biopsies and I have a rare lung condition called B.O.O.P. (sometimes called COP).

I started out with 60 mg of prednisone and was being tapered oh so slowly. I am now down to 2.5 mg @ day. My rheumatologist noticed that I had raynaud's right away.  About 8 months later they added Imuran to my list of meds.  Initially the jury was still out on the Sjogrens.  However my eyes have been killing me.  My opthamologist did that test for tear flow and it was not good. I have been using GenTeal for about 3 weeks and no big difference.  My skin is SO dry and itchy. The only thing that helps that is Hylatopic (script/foam in can).  My mouth is so dry. Was told to use sugarfree sour Ice Breakers.

With the lung issues and all of the above, dr. says I fall in the Mixed Connective Tissue disorder category.

I hope nothing else gets added to the list!  Looking forward to posting with you all!

Judy

Scottietottie

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9206
Re: My Intro
« Reply #1 on: February 02, 2011, 09:10:44 AM »
Hi Judy  :)

Welcome to Sjogren's world. My - it sounds like you've been through the mill!

Sjogren's is such an individual disease. No two people seem to present in quite the same way although dryness is obviously a common factor.

I hope you find the site useful. It's certainly friendly and supportive.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

Bucky

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 3679
Re: My Intro
« Reply #2 on: February 02, 2011, 10:13:39 AM »
Hi Judy - welcome.

It sounds like you have been through a lot in the past few years.   :(

Now that you've found us  :D, if there is a particular topic/subject you are interested in, if you put those key words in the search box in the top left of this page it will take you to previous threads about that topic/subject.  If you can't find anything, by all means, start your own thread.

We're a worldwide forum, although "most" of us are located here in the U.S.A.  We're female, male, from teenagers (a couple younger than that) to those in their 70's and everywhere in-between   :D - from all different walks of life.  Yet . . . we are all united by Sjogren's.  Some have definite dx'd, others have symptoms - but no positive blood work, some are in the process of being tested, etc.

There are many over-the-counter products that help - if varies by person as to what works best.  Lots of times you have to try many products before you find something you like.

Again, welcome . . I hope you find this site helpful to you.

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

cremer

  • Guest
Re: My Intro
« Reply #3 on: February 02, 2011, 10:36:34 AM »
Just like to welcome you to Sjogren's World.

So much great advice on this forum and such a lovely bunch of people you will fill it just fine.

ohiolady

  • Hero Member
  • *****
  • Posts: 2212
Re: My Intro
« Reply #4 on: February 02, 2011, 12:13:47 PM »
Welcome Judy.  I just wanted to mention Restasis for your eyes and Evoxac for your dry mouth.  You can do a search at the top of the page and find numerous discussions on these two prescription medicines to treat Sjogrens.  They've helped me to have a better quality of life. 

Take care.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

gmomjuju

  • Full Member
  • ***
  • Posts: 202
Re: My Intro
« Reply #5 on: February 02, 2011, 04:19:31 PM »
WOW! Thanks for the warm welcome.  I feel like I have a new family.

I really enjoyed the SPOON idea!

I really love this forum!

More later,
Judy


season

  • Guest
Re: My Intro
« Reply #6 on: February 02, 2011, 09:01:52 PM »
Hi Judy. I hope your dry mouth and eyes get better. It is a big part of sjogrens.

I battle with the dryness issues too.

Meld256

  • Guest
Re: My Intro
« Reply #7 on: February 02, 2011, 11:51:05 PM »
Hi Judy,

Welcome to the fold! ;)  You are a part of a new Sjoggie family!

As others have posted, you've really had a time of it the last few years. I can understand the eye problems and extremely dry mouth. Until you get to a doc again, there are some great over the counter products that can help quite a bit.
Biotene makes several things for dry mouth: there's a mouthwash (very soothing), a spray, toothpaste and a gel that I use daily (especially before I go to sleep). They should be found in your local Walmart or Walgreen's.  For eyes, there are several. One is Refresh Optive lubricating drops.

Please keep us posted. I think Bucky explained very well that we are all different people and yet connected by this crazy, rather misunderstood disease. We support, encourage, cry and laugh with one another.  We hope you'll find the forum very helpful.
Looking forward to hearing more from you.
Take care,
Melinda

mews

  • Guest
Re: My Intro
« Reply #8 on: February 03, 2011, 05:11:03 PM »
Just wana say welcome Judy.. I shall see you around the boards.. Feel Well!

Mary