Author Topic: HI NEW TO THIS  (Read 5026 times)

tomsmom

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HI NEW TO THIS
« on: June 19, 2009, 01:38:26 PM »
Hi.  My name is Danni.  I am 29 and have two young boys.  Ages 4 and 8 months.  I was diagnosed in the last couple of months with Sjogrens. Positive ANA and SS-B.  Im currently taking Plaquenil 200mg twice daily (started last week) and supplements to try to lick this thing.  I get monthly B-12 shots which I just started, coenzyme Q-10, high dose fish oil, magnesium, evening primrose oil, olive leaf extract, and D-ribose.  I also have (graves) hyperthyroidism-- which thank God seems to be under control.    The graves came on after the birth of my first son, and the sjogrens after I had my second.  Maybe I should take the hint and get out of the baby making business. LOL
I get really really tired at parts of the day.  My eyes are a little gritty but ok. No real dryness issues.  Just the muscle pain and unbearable fatigue.  I can't afford to feel this way as my oldest has autism and my youngest a chromosomal disorder. I NEED my energy as they need my undivided attention.  My husband is amazing and supportive but his job takes him away frequently and when he is home he is a work a lot.  So I'm really interested in what everyone here-- especially the moms-- do to get energy.  I'm trying desperately to figure out, what else, besides what I'm doing now, will get me into remission.
God bless you all!  :D
Danni

Pisces24

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Re: HI NEW TO THIS
« Reply #1 on: June 19, 2009, 03:59:23 PM »
Well, I am not a mom but I am a "housekeeper" to 5 cats so don't know if that counts as much. :)
I am also very new to SJS too ad I was diagnosed in March 2009.  I also have the A &B antibodies but thankfully am not experiencing the fatigue that you are.  Mine is "odd" bloodwork since 2000, getting sinus/tonsillitis infections very easy, getting teeth cavities a lot, some partroid gland swelling, allergy feeling eyes and a dry lower lip.  I also have underactive thyroid since about 1978. Also Reynards in two fingers in the wintertime. That is it so far. I am on no medication for it - just a thryoid med and an anxiety med.         I heard the Plaq takes awhile to work so maybe yours has not set in yet?

Us gals always want to wade in there and tackle any problem, get it out of the way, and go on to the next. I think it is the hardest for us when we get something like this because we are used to taking care of everyone else and taking care of ourselves runs waaaay down on the list of priorities.  I was a caretaker for my elderly folks for many years so I can relate. Unfortunately, there are some things you just can't "cure/fix" and you just have to live with them.    I am learning to take better care of myself ie: eat better, rest, exercise, etc. and I think that is something you will have to start working on.  Listen to your body and give yourself a break once in awhile.    Stress sure doesn't help SJS either!! Sounds to me like some mental relaxation would sure help you too.

Patze

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Re: HI NEW TO THIS
« Reply #2 on: June 19, 2009, 06:08:36 PM »
Hi Danni,

Let me also welcome you to the SJS World!  Please so look around as there are tons of topics that you might find interesting.  And let's not even mention all the terrific members we have! :D

I can understand your exhaustion!  With having two little ones is enough by themselves to keep you extra busy!  And I can imagine throwing in SJS, wow, you must be on overload some days!

Have you had your eyes checked lately?  I remember that gritty feeling so well, it about drove me nuts!  My eyes are to the point where I now need to have plugs put in them, and I have no idea what to do next if the plugs don't work.

Yep, like Pisces, I too am hypothyroid, and even being "properly medicated", I'm still having some issues, but is it the Hashimoto's, Fibro, or SICCA?  So hard to say.

Again, welcome, and I hope to chat with you soon!

Take care -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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Bucky

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Re: HI NEW TO THIS
« Reply #3 on: June 19, 2009, 06:33:14 PM »
Hi Danni,

Welcome to Sjogren's World.  My son is quite a bit older than your children, so I don't have to keep a constant eye on him.  I bet it can be very exhausting for you at times.  Does your four yr. old still take a nap?  Not sure if both your boys would take a nap at the same time, but if they do, if I were you, I'd lay down and take a nap too!  (I love naps!!  ;D)

If you wanted to ease some of the gritty feeling in your eyes, you might consider using Preservative Free eyedrops.  They make my eyes feel better. 

I've had an underactive thyroid for 10+ yrs. - have to have it checked annually.  When your thyroid is out of whack, it can really make you tired.

On days when you just don't have the energy to keep up with the children and the household, I'd let the household stuff slide.  The laundry, dishes and such will always be there - unless you are fortunate enough to have a little "household fairy" come while you sleep.   ;D   

As Patze mentioned, there is lots of information on this website.  If there is something in particular you are looking for, just type it in in the "search" box and it will bring up other posts relating to that.

Again, welcome.

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!)

lynnmarie219

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Re: HI NEW TO THIS
« Reply #4 on: June 19, 2009, 06:54:41 PM »
Hi Danni,

I would also like to welcome you to Sjogrens World! I hope you find all the information here helpful and the support and friendship comforting!

Welcome to the family!

Scottietottie

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Re: HI NEW TO THIS
« Reply #5 on: June 20, 2009, 12:07:47 PM »
Hi Danni  :)

Just wanted to say welcome from me too!  :)

Take care - Scottie  :)
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Chickpea

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Re: HI NEW TO THIS
« Reply #6 on: June 20, 2009, 01:41:57 PM »
Hi Danni

It sounds as though you have a full and busy life so no wonder you're tired!  Two little ones are always exhausting, as well as wonderful, and special needs bring their own challenges.  Does the 4 year old go to playgroup or any daycare?  Are there times in the day when the baby sleeps and you can have a rest?  My children are all in their 20s now but I have clear memories of the exhaustion of the early years.  I wasn't very sensible either and would use their nap times to do cleaning or rush around with other chores.  I wish someone had told me to rest when they did, and that a happy house doesn't have to be squeaky clean!

It's hard to know what brings periods of remission - we're just grateful when they arrive!  You've got started with lots of things that should help and may slow the progress of SjS.  Are you doctors supportive and informed about SjS?

Visit lots and tell us how you are doing.

Take care - Chickpea

Dolly Dimples

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Re: HI NEW TO THIS
« Reply #7 on: June 21, 2009, 10:10:56 AM »
  Welcome Danni. 
                               Fatigue is a big issue with SS,  as far as I am concerned rest is essential,  try to do that !
    Pushing ones self too much causes stress, don't be shy of asking for help either..

       I assume that the VIt B12 is for Anaemia, so you should start to feel the effects of these shots soon..

  Of course having 2 small kiddies is so tiring at the best of times.  Try to get them to nursery soon, and keep in touch with the health visitor..
                     You will feel at home here and will learn a lot too.. Big comfort hug, Dolly x
                       

KYMOM

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Re: HI NEW TO THIS
« Reply #8 on: June 22, 2009, 04:51:31 PM »
Danni, I take ubiquinol instead of the ubiquinone (CoQ10).  I was told by a scientist friend that people who are on certain drugs and people who have AI problems have a hindered ability to convert CoQ10.  Ubiquinol a reduced form of ubiquinone and was suggested for me instead of the ubiquinone.  CoQ10 can be found at most grocery stores and drug stores.  The internet is the cheapest place I was able to find the ubiquinol.  This is from my own perspective only.  Do some research. Roxanne