coming to terms.

[withgodshelp]

Hello All,

I was diagnosed with Primary Sjogren's Syndrome about two years ago. I have avoided joining any Sjogren's organizations up until this point. Although I live most days without Sjogren's defining who I am, on days like today, I fall into the black abyss where I become glued to my computer googling symptom after symptom trying to self-diagnose. Before the onset of my Sjogren's, the only health problem I encountered was after the birth of my second child. When he was three months old, I was diagnosed with Postpartum Thyroiditis which catapulted me from hyperthyroidism to hypothyroidism in a matter of two months. I was also found to have an irregular heartbeat and panic disorder. My life was truly turned upside down!

Looking back, I can see how all of these things lead up to the Sjogren's diagnosis. I just read a study (http://www.ncbi.nlm.nih.gov/pubmed/18276740?dopt=AbstractPlus) which shows a relationship between stress and Sjogren's. I have been doing fairly well on my treatment (Plaquenil, Evozac, Lexapro and Synthroid) and see my Dr. for follow-ups every six months.

Now, it seems that Sjogren's plays such a large part of people's lives. I am, by nature, a worry-wart, and with all the information available on the web only makes things worse for me. I am going through a lot right now in my life... mainly health problems with my Mom and my two sons...

Tonight I googled "headaches" and found that "Complications include kidney involvement, pancreatitis, lymphoma, and a rare condition called Waldenstrom?s macroglobulinemia. These latter two malignancies can cause marked swelling in the lymph nodes, salivary glands and present with severe headache." I had a migraine about a month ago (never experienced that pain before). Now I'm all worried about it...

Is this ever going to get better? The worry, the confusion and the uncertainty?

[Linda196]

Hello WGH, welcome to Sjogren's World.

Naturally, the way any disease process affects a person's life depends a lot on the severity of the symptoms, but it also depends a lot on one's personality, and how we respond to change, uncertainty and discomfort. Learning to deal with a chronic illness leads us through the same stages of grief that loss or critical illness does...Denial, Anger, Bargaining,  Depression, Acceptance. In many cases it's very helpful to speak with a counsellor experienced in dealing with people with chronic illness. Ans as I tell everyone...please don't personalize what you read on line...a lot of it is very scary, but not the usual progression of the disease....most people who experience dry eyes and mouth simply don't feel the need to broadcast it because it's just not that huge a thing in their lives. What you see is dire warnings, possibilities, risk and worst personal experiences...not the routine cases.

Basing a dire prediction on one migraine shows that you are most definitely worried about the consequences of SjS and it's many possibilities, but please try to remember that not every one follows the same route with this disease, and even though you've had a very rocky start with it, that doesn't mean you'll have a "worst case scenario" in the future. You may have been experiencing a severe flare brought on by childbirth, thyroid issues and anxiety, and once it resolves you may find yourself with mild to moderate, manageable symptoms...time alone will tell.

Please feel free to come here anytime you have questions, concerns, or just want to know you're in a place where you and your issues are understood!

[jonnell]

Welcome WGH,  My little one who is 4 has sjs and she gets really bad headaches.  She was seen by her Rhumy yesterday and she told us she believed that is coming from her sinuses.  The thing with sjs is that it drys out everything.  I also worry about everything especially the lymphnoma.  Thats whats nice about this website you get better information and actual people who have the disease not worse case senarios.  Hugs and Kisses    Jonnell and Jenna

[Scottietottie]

Hi WGH 

Welcome to Sjogren's world. SjS is interminable, but not terminal. It's also very unpredictable. It doesn't seem to take any two people the same way. Reading all the possible symptoms on the web can be scary but nobody gets all those symptoms. Its not the way it progresses.

Life is for living and not for worrying about what's round the next corner - or not - as the case may be.

Stress makes SjS worse so it must be hard with your family also having health problems. You need to make sure you have some 'you' time.

Stress can also cause headaches all by itself without SjS even being involved.

Take care - Scottie 

[JannaLee]

Hi WithGodsHelp,

I know how you feel.  I was diagnosed about a year ago and have been dealing with the same feelings you have.

I'm one of those people that absolutely HAS TO KNOW all the possibilities up front. Of course knowing all this stuff makes my 'worry wart-ness' flare up along with my Sjogrens!

For me, the best help has been to read this forum daily.  It has given me a real good perspective on the way this disease works and how to recognize if something is happening.

I also keep a 'symptom journal' so I can show an unemotional synopsis of my situation to myself and the doctor.

Lastly, I go to the doctors regularly (which I hate more than anything) and when something new crops up, I try to get seen ASAP.

In the end we have the responsibility not to ignore symptoms AND if there is a 'gut feeling' that contradicts the doctors' explanation we should seek another opinion.  I think that's all we can do....the rest is up to God.

My best to you!
Janna

[ohiolady]

WithGodsHelp,

After being diagnosed with Sjogrens 2 1/2 years ago, I would not join the site because I thought it would be too depressing.  I did not want to hear how much worse it could be because I was already so sick that I could only think about one day at a time.  I greatly feared progressing and getting worse.  About a year after my diagnosis, I very gradually started to feel better and lead a fairly normal life.  I've found the best treatment plan is REST. 

This January, I was diagnosed with kidney cancer and had to have my left kidney removed.  In the past, I would have educated myself and would have become an expert on kidney cancer.  Well, the first time I looked it up on the internet, I saw statistics stating that I had a 45% chance of being alive in 5 years.  Well, my doctor tells me I have a 90% chance because of the grade and the stage.  I have decided not to read anymore about kidney cancer nor dwell on the fact that, yes, it can come back.  With God's help, I will live each day as fully as I can and pray it never returns. 

I usually don't do long posts but I just wanted you to know that I understand how you feel.  We simply cannot dwell on the what if's or it will drive us crazy.  And, it is possible to feel better with Sjogrens. 

Anna

[kimbo]

Hi withGod,

I am glad you found us and I hope you find comfort in this forum with lots of information and advise. It is a good thing to find support from one another as we travel this journey together.

The others have shared much of what I would also share.

Before SJS , I had my tonsils out when I was 11 and 2 natural child births. Very healthy was I !   

I have experienced all that Linda stated as the process in comming to terms with a chronic unpredictable illness that has invaded my good health.

I believe SJS has brought on some other stuff, it classically brings, Hypothyroid and colon issues, along with the big claim to fame of over all dryness. 

withGod  ,I believe there is peace in coming to an acceptance of things we can not change.   And changing what we can.......
and thats my attitude, I have to fork over my bad attitude    some times and put on the one I should be wearing. We are all a work in progress.   

Lady Ohio, said- rest- thats right. Our bodies require rest and our loved ones need to understand why. So I believe a nicely written concise article comes in handy for the people of concern close to you. Its easier for them to read a relevant article than for you to try to convey it yourself.

Also be very much aware that stress is an attacker on our Sjoggy systems.

Put those STRESSES to rest. Find personal ways to manage stress , take charge or they will take charge of your sjoggy health.   

Make your self at home and enjoy our sjoggy family here.

Blessings ,  kimbo

[KYMOM]

Hello WithGodsHelp, I was diagnosed a year ago.  Before that point I believed that I was at my best health.  Over the last year I have had problems that I felt were related to the Sjogren's but were not confirmed by Docs.  This site is the best.  It is great to find the familiar among the many members.  Like many others, I notice more difficulties when I let the stress build up.  I have had to learn to just lie back and take things as they come.  With four of my children in high school at the same time it is not always easy.  The internet is a wonderful place but I have not looked to the internet for explanations for my symptoms since I discovered Sjogren's World.  Usually if I keep looking someone will post with a symptom that I didn't even recognize as a symptom until I saw it in writing.  Good luck. Roxanne

[wednesday mc haggis]

WGH

    i know you feel scared and helpless,at times,  i think all of us would alone with SJS with no one to share with, my fear factor has been greatly reduced here.So many positve caring ppl, who on my bad days have reminded me at 37 years old, that life goes on, and it does!!

   Sure if we trawl the net its a scary thing and i have, but i found it solved nothing, here you get a better balance, and always someones been where your at.

  strangely lymphomas not a worry for me, just never have worried about it, cant say why, i guess my 2 sons aged 9&13 leave me with enough ironning to worry me more lol.

  youve found us now, and were all here to share, and its never so scary to deal with ,with help. 

T x

[Epson]

Newbie,

Like you, when I first got dx with Sjogren's I worried about this and that, read about all sorts of maladies that can be associated with Sjogren's, then life through me a curve ball.  All the time I spent on Google researching what might happen, wouldn't you know it, I get a cancer that has nothing to do with Sjogren's and some kidney damage that has nothing to do with Sjogren's.  No need to worry about what might or might not happen, when you have know control over it.  You might get killed in a car accident, doesn't mean your going to stop driving, just buckle up, keep your eyes open and stay off the phone.