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[Fairykissez]

Hi my name is Jen, I was dx a month ago with sjogrens and lupus, Im 34. I have 4 children and a wonderful very understanding husband.

On April 29th I had some numbness start in my face , lost coordination like I was drunk. Originally they thought I had a stroke which it was not. Then bellspalsy, nope not it. Then came the "your mentally ill" dx which was the most offensive, Im not imagining how Im feeling. Then nuero dr says its migraine, nope not it either. Then occipital nuralgia, nope not it. Then back to the "your mental" theory. As you can see this has been a rollercoster ride for me. I finally went to see mt rhumatologist (sp) who I had been seeing for the past 5 years. I had some random swelling of joints but nothing ever came up on my blood work. It finally showed an elevated ana and ss. This dx was very hard for me to accept, Im still trying to digest it all. I was in denial the first week, refused to take the plaquinil but after another week not able to get out of bed I started taking it. I was not a stranger to ss, my mother has it. I just never understood it and my mother never took her disease seriously (she does now) so I never thought it was that bad. Boy is it worse than bad, its he**!! I cant believe how something can make you feel so bad. My worse symptoms are brain fog, headaches and sinus pain. Headaches so bad they would confuse me. I started having memory issues and had to drop out of school with only 5 classes to go.

So since starting the medicine, and a wonderful machine called alpha-stim I am out of bed and can semi function. My anxiety is getting better, however I am beyond depressed. I guess that is normal with living with this disease.

I am getting ready to have surgery to remove the lapband I had placed a few years ago. I need to be able to take nsaids for pain and they are not allowed if my band is still in, and my surgeon says autoimmune issues and lapband dont mix well so it has to come out.

Its nice to be here with others who understand, my family is supportive but they dont know, they will never truly understand, well besides my mother we have become very close through all of this and she believed me when everyone else thought I was crazy.

Thanks for listening to my story hope it wasnt too long.

Jen

[Joe S.]

Welcome Fairykissez, it sounds like you got your Dx quickly compared to most.

Since management is a big key, I suggest that you read "Spoon Theory": 
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I find it interesting that you are into electro-therapy. You may want to check out www.chakraforce.com If you need a list of tones I can provide them.

Ask your health care professional about taking these supplements; D3, C, B12, inositol, magnesium, multivitamin, carrot juice, R-lipoic acid, and Acetyl-L-Carnitine.

You may wish to learn Reflexology, or Reiki to help you.

[smallfry]

Hi Jen,
I must say you have described very well just how a lot  of us feel, I am so sorry that you have been diagnosed with this terrible condition especially with 4 children you would have to find it very difficult. I have found this warm and friendly place to be very inspiring and extremely helpful.Welcome

[Fairykissez]

Joe,

Thanks for the link, I look forward to reading about these "tones". I love the alpha-stim, I got it from my TMJ specialist who said it might help with the headaches. I have used it a week and headaches have lessend. I had been living with the headaches for months.

I will ask my dr about the supplements. I am all for anything that will help. Im sure my vit d levels are still low so I should at the very least take some vit d.

Thank again,

Jen

[Meld256]

Hi Jen, (or Fairykissez) 

Welcome to the forum!
I think you'll find some warm and caring people here, loads of information, and a huge amount of support and encouragement.   No, your story is not too long at all; we appreciate a little background info. on what's been happening to you. 

I'm sorry that your "journey" to a diagnosis sounds very familiar, unfortunately.  It takes so long to get this figured out and the fact that docs seem to sometimes blame us makes it all worse. 
I can tell you that you've come to the right place.  We understand how hard it is to deal with learning that you have a chronic illness and all that can mean.

I am glad to hear you are beginning to feel a bit better.  Plaquenil has made a big difference with many of us. I can tell you that it can get easier to deal with Sjogren's, but it is a process that takes time.  Please give yourself time to digest your diagnosis.  We tend to say that it is a journey...but we will be here with you!  Also, if you feel that you are very depressed, please let your doctor know.  This is very normal and they should be able to help. 

We look forward to hearing more from you.  Please keep us posted as to your lapband removal, and remember to ask anything, just vent if you need, and comment and post away!

Take care,
Melinda

[newhorizons]

Hi Jen, I find myself in your mother's spot at 68 and have a precious daughter diagnosed also with Sjogren's last year at 39. She has two beautiful little girls.What sex are your 4 youngsters?

Do you and your mom live near each other?  Wish my daughter and her family did.

You, truly, have found a safe haven here 24/7! Come often and keep us updated.

[Patze]

Hi Jen,

Let me also welcome you to the SJS World and family! 

Please look around the board, and if you're looking for anything specific use the search option at the top right of this page as there are tons of topics that just might help.  If you can't find it there, don't be shy and ask aways as there is usually someone about that might be able to help.

Again, welcome and I hope that you'll find this board helpful.

Take care of yourself -

Patze

[A66eyroad]

Jen, welcome! You'll find a wonderful support system here. I don't know what I would have done without this forum to give me a voice. Here I can scream, cry, vent, embarrass myself, and be kind to others. It's very empowering. I hope --- no, I know! --- you'll find comfort and love and acceptance on this forum.

[Fairykissez]

Thank you all so much for the kind words. Im still very much going through the motions, Ive moved now to being angry. I want to go to my rhuemys office and demand that he take back my Dx!!! I know it dont make sense none of this really makes sense to me right now. I guess acceptance takes time, something I have a lot of now.

I am normally an upbeat person with a good sense of humor, hoping that part of me will return soon so I dont sound so pittiful all the time )

Again thanks for the warm welcome, thank you all so much.

Jen

[Joe S.]

Sounds like the stages of grief.

[A66eyroad]

Jen, I know just how you feel. Lucky for me, my husband is a family therapist. He told me that being diagnosed with a chronic illness causes people to go through the very same stages of grief and loss that someone goes through after a death.

http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

Sadly, you'll go through these stages over and over, but hopefully in less and less intensity. Being diagnosed with a chronic illness is a tragedy! So please, be kind and gentle with yourself.

My favorite quote is from Mr. Rogers:  "Some days, doing 'the best we can' may still fall short of what we would like to be able to do, but life isn't perfect - on any front - and doing what we can with that we have is the most we should expect of ourselves or anyone else."

[A66eyroad]

Joe, you read my mind!   

[Meld256]

Jen,

You are not sounding pitiful...you sound normal. 

The fact that you are now angry is actually a good thing; you are moving forward, as hard as it is to do.  I remember going through this part.  I did not like the new ill person I had become, so I wanted to trade them  in for "the old me."  I liked "the old me" who was energetic and could remember things, and I wanted them back!!     And I couldn't find a return desk anywhere for "me". 

A66ey's link is wonderful, because it is all so true.  I can only be encouraging to others now because I've been what I considered "pitiful".  I've had several pity-parties for myself.  My husband has come home from work to find me crying inconsolably.  I've had days I didn't want to look at anyone, or talk to anyone.  I felt sorry for myself, depressed and angry.  What I found out is that we really need to go through those types of feelings.  It is hard work and it stinks while you're doing it, but it is so worth it.  And it takes time...which also can stink.

Please give yourself permission to feel sad, or angry or whatever. Talk with your husband or other family, friends and just vent here whenever you need to.  It's a process.  We are here for you and with you! 

[Pisces24]

We all understand Sjogrens diagnosis is a lot to take. You have been on a rollercoaster for a very short time and have not got it all balanced and processed yet. Five months of just straight "heck" has to be hard. It is a big wake up - to learn that doctors don't know everything and just how "lazy" some drs are at trying to find the real problem. Oh gosh it is like reality hits you hard in the face dealing with everything!

Most of us here went through some or  all of the same things you have gone through. But for most of us the diagnosis came very slowly. Myself it took 6 years.. and I got the same runaround from the drs.   I had one tell me he was sure it was some kind of cancer so for about 5 mos I was waiting for the roof to cave in and emotionally had my life on a big hold.  But then I had another specialist (if you want to call em that) tell me it was probably something I got from my cat! 

The one advice I can give is: take a deep breath - you will get through this and adjust. You will learn to listen to your body. And two big things I had to learn (1) be proactive with drs or have a advocate with you to dr appts  and (2) give yourself a break. Don't push yourself so me and take some me time. With us gals, I think these two things are the hardest to learn. Good Luck!

[Fairykissez]

Pisces, thanks for the laugh....the cat  Im sure its was not funny to you at the time.

I have learned that most dr's dont know shoot and to be told over and over again " I dont know whats wrong with you " was the most frustrating. I have to say thank god for my Rheumy because he was the only one of the half dozen specialists I saw who wanted to help me.

This "flare" Ive been in since April is like living In  heck, how long can flares last? I know that I have to find a new "normal" but if I could just get some of my old self back, just to be able to drive would be amazing.

Jen