Having a really hard time coping...

[Cmeeker]

I've been following this forum for a while, but this is my first post. I feel like I have no one in my life who understands how I feel, and I'm falling apart. I'm sorry that my first post has to be like this, but I know that some of you will understand how I feel and from what I've seen from my lurking, you are all so kind and supportive.

Anyway, I have sjogren's syndrome (and possibly RA?). I started noticing symptoms maybe 6 months ago, but last month things got drastically worse. My eyes suddenly got so dry. They put plugs in and they only seem worse. When I cry, no tears come out.  I work at a computer and it is miserable. In addition to my eyes, I have had a sore throat for months, joint pains that come and go, and dry mouth. I know many people have it so much worse. My biggest problem is that I'm 33, I have a one year old, and I know this is only going to get so much worse as I get older.  I can't imagine living like this and then worse for another 30 years, even 20. I just can't. And I feel like I won't be able to be the mom I wanted to be because of this disease. I feel so bad for my son that he has to have a mom like me, who will not be able to do as much as the other moms. Or a mom who is terribly unhappy. He deserves a happy mom.

I used to love having a couple drinks with my husband on our patio and talking together. Now I feel like I shouldn't be drinking anymore. I know I can still talk to him, but I miss my wine and I miss talking without a dry mouth and terrible thoughts in the back of my mind.

I'm sorry that this is so depressing, there's just no one I can say these things to. I joined a facebook support group, but it has made me even more depressed and scared because everyone there seems so disabled and depressed. I have yet to hear from anyone who has this disease and leads a happy life without a ton of limitations.

[Fortitude]

Hi.  I am so sorry you are feeling so down.  This disease is hard, but add to that being the mother of a one year old, that's twice as hard.  I know that a lot of people post how bad their disease is and how it is progressive, but everyone is different, very different.  You may go for years not getting any more symptoms.  We have flares with autoimmune diseases where the symptoms get worse, but the flares can subside too.  Don't lose hope.  There are a lot of clinical trials going on trying to find new meds for us and there is a lot of research being done on every kind of autoimmune disease that will surely help us Sjogies too.  Keep talking about how you feel. That is important.  We all understand here and you can share anything here with us.  Hugs to you.  Stay strong.

[Joe S.]

Welcome to the forum. Things do get better when you learn how to manage the symptoms of this disease. It typically takes 7-12 years to get a diagnosis. Usually the first year is the hardest for most as they start to build management skills.

Here I a few tips. Sorry if I forget some.

1. Do not panic! Panic makes the symptoms worse. Panic is a form of anxiety.

2. Breath through the pain. When we are in pain our muscles tend to splint, become tight and generate more pain. As you breath, the oxygen tends to relax those muscles and reduce your pain.

3. Meditate. Practice when you do not have pain so it works better when you do. I have a simple meditation that works very well for a lot of people.
a) get in a comfortable position and close your eyes.
b) with your eyes closed look to the top of your forehead
c) as you breathe in think "I am"
d) as you breathe out think "calm"
e) repeat for 15 minutes. If you loose focus, start again.

4. Sip, swish, swallow. do not drink water but sip, swish, then swallow. make the most of each sip.

5. You may wish to look at our signatures for medications that we are taking. before trying any meditation, check for counter indications, side effects, and drug interactions.

[Cmeeker]

thank you both for the kind words.

Joe, I definitely have been panicking this week and last, and lo and behold, symptoms have been worse. I will try your breathing exercise.

[cccourt1942]

When I cry, no tears come out.  I work at a computer and it is miserable... joint pains that come and go, and dry mouth... I can't imagine living like this and then worse for another 30 years... I used to love having a couple drinks with my husband on our patio and talking together. Now I feel like I shouldn't be drinking anymore. I know I can still talk to him, but I miss my wine and I miss talking without a dry mouth and terrible thoughts in the back of my mind.

Hi C,
    I am ccc .   I started symptoms you have in my 40s...mid to late 40s.  I still worked...but my children were grown.  I would have a really hard year, then a not so hard year.  I never put my symptoms together.  In my 50s one year I took off about 6 weeks...I literally couldn't move.  Literally.  I know I went to the bathroom...I just can't recall getting out of bed.  I hurt, I ached, I was tired.  My eyes drove me crazy. I worked on a computer, but not all day. 
     Fast forward:  I was a grandmother, still entertained, tired all the time---worked full time.  Fast forward:  Retirement, widowed, moved.  Did contract work in my field.  At age 71 I finally asked about the eyes and mouth.  Dx.  THEN medication.  I'm 75 now.  I am almost normal.  None of us can really recall what normal was.  Thus, we refer to our "new" normals.  I do NOT have RA.  I have other AIs, and I have some other conditions outside SS.  I have OA. 
     You will live with this disease ...and you will be a good mother....and you will be functional...and you will get better.  You will have a life...a full life---and you will learn to depend on your meds, your stretching (or whatever exercise you can tolerate), you will find and trust your doctors (though you may have to dispose of one or more along the way), and if you are like many of us here: you will depend on us for chatting about SjS and moaning on bad days...and helping to support newbies on your good days.  Your family and friends won't be very supportive as you look healthy, and you will care for yourself, your home, and your family. 
    You can find a SjS support group in your area,  and that helps. 
    YOU WILL GROW OLD WITH SJS.  You will take your child to first day of school....and see graduation, college, etc.  Many of us lived full lives and productive lives...with odd symptoms, undiagnosed conditions, MISDIAGNOSED conditions, etc.   I am not minimizing your despair. If I am recalling correctly, I do not recall one person joining this forum who does not start out like this, your first post: myself included.  It took me over a year before I somewhat leveled off..then had another (outside Sjogren's) condition slap me in the face...so another year to get that under control.  And I am old!! 
     Stay here as long as you need.  Change your baby's diapers, and feed!  Otherwise, sit...and you will drink again...but eventually the dry mouth will make it so uncomfortable you can't.     You will be okay. 
     Rest.  Watch happy shows, read hopeful books.  Smile.
ccc

[quietdynamics]

Hello Cmeeker, Thank you for posting your concerns and situation. Whenever someone posts they help another. So again, Thank You.

Eyes: I recently attended a seminar at an Eye Institute. Even with plugs one often needs to use eye drops (often those with higher viscosity, I use Systane .. I do not have plugs). It was discussed that people in general due to reading, media and computer viewing blink less.. so not coating eyes. Drs. retrain patients to blink more and to view monitors lower on the horizon (not straight horizontal) so lids close more to cover more eye for less evaporation. Add to the mix your work environment, bright light, air conditioning is drying.. so add eye drops to protect and allow lids to slid over eye rather than rub over eye.  Not sure how your Dr. would feel about Pilocarpine (for dry mouth and I was informed it helps with dry eyes, given you are childbearing age. Others do take it and half life is short. Same with Restasis for age group.. so ask Dr.). Chewing sugarfree gum with Xylitol increases saliva (you don't need to chew it like the proverbial cow..   just a few chew, tuck to side, then later few chews.) Chewing promotes saliva.

A nice casual drink every so often is not going to hurt. Think Drs. are often more concerned with medications that may affect the liver combined with regular consumption of alcoholic beverages which overtime can cause fatty liver. Ask your Dr.

A one year old can be a bundle of energy and age two and three come soon enough. Even when I was healthy it was at times exhausting. But, I was my child's mother, not his playmate. So it made more sense to take him where the other little ones were (and it kept the home tidy  ).. so off to the local park.  Once because it was a very muddy,wet spring I drove both my small children to the park. They had a blast with other children; took neighbors kids too..lol. Insane? Not really. When it was time to drive home, I had them hop their muddied tired selves into leaf trash bags (think potato sack races of old) and chauffeured them home to a bubble bath with shaving cream mountains.    So even 'healthy' moms learn to conserve energy and let kids have fun with kids. I have been fatigued with granddaughter and when she was learning to read .. had her read to me as we cuddled. There are many rewarding, inspiring other ways of doing things.

I hit what I term 'the wall' when children were in teens. So they had a reference for comparison. Old mom vs. now mom.  As young adults they have displayed actions and words of compassion to others. There are people who have chosen careers in medical fields due to life experiences with loved ones who have medical challenges.

As Fortitude wrote: "everyone is different" in how, when and to what degree, duration symptoms present. I was amazed when I first read that there are positive SJS patients with no symptoms present. Phlebotomist at lab I use works, takes no meds and has few symptoms. Research shows that persons Dx'd early have better prognosis. And do not dismiss those who experience remission.

I have upon occasion said to Drs. "these are my symptoms (pause), not complaints. And this is how it affects my family, Quality of Life.
I have worked with children born with crippling medical conditions so my experience is different, and sometimes I bolster inner strength by watching videos of how people have overcome traumatic injury, loss of limb, burns, rehabilitation and come through, for inspiration.

Yet, it is at times overwhelming.. we are human. Not depressing.. we are a mix of emotion; healthy or not. However, if the down feelings, fears stay, consider the help of a therapist to help you vent face-to-face and learn positive coping skills. I have found this of great benefit for myself and how to stay 'centered' with family and friends.

For now, in this moment snuggles and cuddles with a 1 yr old are supreme. (when they are older you will get the "MOM!!!" pushback wail of embarrassment as they go the stage of parent/child separation.   

Think. When your toddler or husband is ill,sad or fearful you reach out to them with comfort. Learn if you can to be kind to yourself and treat yourself to even little self-comforts. An herbal/Epsom salt bath with candles and...

[Carolina]

Dear Cmeeker,

First, many if not most people with a Sjogren's Diagnosis do NOT get worse at all. This is very true.

What you read on this forum, for the most part,  is not the usual experience of people with Sjogren's Syndrome.

Those who  post here are the very FEW who experience a more complicated path with Sjogren's/Immune Disorder(s).  You may need this forum now, but perhaps you will drift away when life becomes calmer and you adjust to what you experience NOW, without any progression at all.

I have found coping mechanisms, and live almost pain and symptom free.  I have little pain now from my many 'conditions', but I do take several important medications and have adopted many methods to produce that state.  I have come to them slowly over time, and they work well for me.

We are all different from 'ordinary people' with our Immune Disorder, and we are also different from each other.  What works for me may not work for you.

1.  Pilocarpine helps tremendously with my dry mouth and dry eyes.  I now take 4 5mg tablets daily, up from the 3 that I started with in 2002, when my dry eyes suddenly appeared.

2. Anti inflammatory medications like Ibuprofen are Over-The-Counter (OTC) and can be carefully added to reduce your pain from inflammation.   My favorite was Aleve, which I took for years, but now it hurts my stomach, even with daily Omeprazole, so I take Tylenol instead.

3. My mucus is very thick and gluey due to dryness.  I have to take a Mucinex generic to help it move out of my nasal passages, where is blocks my breathing at night.  I also rinse my nasal passages with a saline solution and use Nasonex to help clear my nose. 

4. For me, when I'm in a 'flare' of my Immune Disorder, I ask my Immunologist for a Prednisone Taper.  This is a brief course of steroids which interrupts the flare (Pain, Fatigue and Depression) so that I can return to 'normal'.

5. Plenty of rest and sleep are important, and I also 'pace myself' so that I don't take on too many things at one time.

6. Meditation and Relaxation, as well as frequent 'gentle exercise' (unless you are a Tri-Athlete, of course).   I find doing my own water exercises in a warm pool to be ideal.

7. I keep my bedroom humidified when the heating is on.  I have a humidistat next to my bed so I can be sure the humidifier is at the right setting for me. 

8. Cymbalta is on label for many kinds of pain, as well as depression.  It is am important medication for me, since my greatest pain is from osteoarthritis.

9. Gabapentin/Neurontin is essential to control my neuropathic pain/itching/burning/tingling. 

It is most likely that you will NOT get any worse, Cmeeker.  What you need now is what we all need in life:

Patience (with doctors, with yourself, and with ordinary people who don't understand what you are going through),

Persistence (to find the right medical team, to find adjustments that make life better for you and your family), and

Acceptance (Yes, your have a chronic condition, and life is different, but you will find ways to cope, and one way is to reduce your own stress by practicing acceptance)

Keep us posted,

Hugs, Elaine

[jazzlover]

Welcome, meeker!

I agree .. I thought this site was a downer until I went over to the FB group. Sheesh.

I have several illnesses all rolled into one. Somehow I cope and I lead a very active life. My worst symptoms are the ones caused by MCAS, not SJS.

The SJS seems to be ramping up now, however. UGH.

I do have plugs and I love them. Be sure to check on those.

I find that a LOT of foods cause pain for me. Check into lectins and oxalates .. they both cause pain for me and are related to RA symptoms.

[Liz D.]

Welcome cmeeker,

I think we all feel your pain and remember all the same feelings when we first got diagnosed.  One of the best things you can do is something you have already done.......join this forum.  I've had SJS now for over 14 years and I have coped because of this board!  There is always someone on here that has been through any given problem that can give support and tips on how to deal with it or alleviate it.

Also, finding a good rheumatologist will help tremendously.  There are many medications that have been a godsend to me.  And they may work for you, too.  The meds and supplements I take are listed below.

Hang in there.  You will get trough this tough time and still be an excellent mother and wife!  Keep coming back and perusing these boards!

Liz D.

[susanep]

Welcome,
You got some really good advice, and just a new way to think with sjogren's. You will go on and make it, but we do all have too many times we question that when we think how it use to be, and we all can feel like a jolt hit us out of the blue when we have that flare or some new diagnosis to add to the pot.

Just hang in there day by day, and connect to any good resources that may help you and give you peace.

susanep

[heidiaj]

I am so glad to see your post is still online!  I read it earlier & then couldn't find it when I came back, & I was afraid that you took it off.  I've been thinking about you so much.  I have had this illness for 10 years, and there are times when I still feel exactly like you when you expressed: "I feel like I have no one in my life who understands how I feel, and I'm falling apart."  I wish I could give you a big hug.  Please know that you are getting a lot of cyber hugs through this group!  So don't be sorry you posted what you did.  I VALIDATE it. It's okay & it's healthy to unleash here.  Yes, there are lots of ideas people can offer to help.  I will offer a few, too.  But I want you to know that it's okay to be angry that this is your situation.  It's what you do next that's important.  You've probably heard the saying, "Knowledge is power."  I agree wholeheartedly.  In that vein, I will offer three "knowledge" items.  If you haven't already, google & read "The Spoon Theory" by Christine Miserandino.  Someone on this forum suggested it & I found it helped a lot.  I had one doctor that told me that I had to think of myself as just having a "little teacup" of energy.  Thank goodness I have a partner that has the patience of a saint & reminds me, "Honey, you're just a little teacup!"  The other "knowledge" items I suggest are these:  Get "The Sjogren's Book" by Daniel Wallace.  It has a chapter on almost anything that Sjogren's folks could have.  Some of it is technical because a lot of it is written by doctors, but I still go to it a lot.  The last thing in the knowledge category that I'd suggest is to continue to come to this forum, even if you just want to browse around & not post (but I do think it's healthy to speak up).  Also, use the "search" option in the upper right corner of this site, to look for any topic on your mind.  It will bring you to posts on that subject.  What I really want to say is this:  If knowledge is power, then acceptance is freedom...freedom to LIVE despite the hard knocks.  I've been through a lot in my lifetime, & one of the most painful things was dealing with my son's alcoholism.  The good news is that he has been sober for more than two years.  He certainly had knowledge of being an alcoholic.  It was only when he accepted that it was something that he was powerless over that he became happy with himself and his life and made the choice to LIVE.  Yes, there are days that I totally feel like you expressed.  But I don't let myself stay there for too long before I choose to change the narrative in my head. My son teaches me so much with his new approach to his life, knowing his sobriety is earned through a healthy mind.  I accept that my illness is something that is part of my life. I know that there are people that have it worse than I do, whether it be with Sjogren's or other illnesses.  And I try to direct my attention toward doing something positive for someone else.  You have a husband and a healthy child...and you have love in your heart to share.  Your child doesn't have a definition in mind of how  his mother should be.  He just wants your love, and if he feels that, he'll be happy.  Sjogren's can't take away our ability to love.  Feel free to send me a direct e-mail if you'd like more positivity on a rough day.  A couple other things:  I have used systane drops for a long time, but a doc just recently suggested Alcon's GenTeal Tears gel.  It'll make your eyes a bit blurry for a little bit, but it's worth taking a break to use it for the comfort it provides.  Also, as far as your long lasting sore throats...I only learned in the last couple of years that those sore throats can actually be swollen parotid glands, and, as someone else mentioned, even a brief course of prednisone can get you back in the game!  You've got this, cmeeker!! Heidi

[Cmeeker]

Thank you all SO much for your warm welcomes, kind responses and great advice, I can't even tell you how much you all have helped me. I kept rereading all of your responses yesterday and this morning, some of them brought tears to my eyes and they all made me feel hopeful for a change. Today is the first day in weeks that I haven't felt utterly depressed about my life and future. I'm thankful for this community.

I had a follow up with the eye doctor today to check on my plugs, and she recommended plugging the top ducts too, so I had that done and I got a prescription for Restasis. I'm hoping this will bring me some relief!

[Cmeeker]

I am so glad to see your post is still online!  I read it earlier & then couldn't find it when I came back, & I was afraid that you took it off.  I've been thinking about you so much.  I have had this illness for 10 years, and there our times when I still feel exactly like you when you expressed: "I feel like I have no one in my life who understands how I feel, and I'm falling apart."  I wish I could give you a big hug.  Please know that you are getting a lot of cyber hugs through this group!  So don't be sorry you posted what you did.  I VALIDATE it. It's okay & it's healthy to unleash here.  Yes, there are lots of ideas people can offer to help.  I will offer a few, too.  But I want you to know that it's okay to be angry that this is your situation.  It's what you do next that's important.  You've probably heard the saying, "Knowledge is power."  I agree wholeheartedly.  In that vein, I will offer three "knowledge" items.  If you haven't already, google & read "The Spoon Theory" by Christine Miserandino.  Someone on this forum suggested it & I found it helped a lot.  I had one doctor that told me that I had to think of myself as just having a "little teacup" of energy.  Thank goodness I have a partner that has the patience of a saint & reminds me, "Honey, you're just a little teacup!"  The other "knowledge" items I suggest are these:  Get "The Sjogren's Book" by Daniel Wallace.  It has a chapter on almost anything that Sjogren's folks could have.  Some of it is technical because a lot of it is written by doctors, but I still go to it a lot.  The last thing in the knowledge category that I'd suggest is to continue to come to this forum, even if you just want to browse around & not post (but I do think it's healthy to speak up).  Also, use the "search" option in the upper right corner of this site, to look for any topic on your mind.  It will bring you to posts on that subject.  What I really want to say is this:  If knowledge is power, than acceptance is freedom...freedom to LIVE despite the hard knocks.  I've been through a lot in my lifetime, & one of the most painful things was dealing with my son's alcoholism.  The good news is that he has been sober for more than two years.  He certainly had knowledge of being an alcoholic.  It was only when he accepted that it was something that he was powerless over that he became happy with himself and his life and made the choice to LIVE.  Yes, there are days that I totally feel like you expressed.  But I don't let myself stay there for too long before I choose to change the narrative in my head. My son teaches me so much with his new approach to his life, knowing his sobriety is earned through a healthy mind.  I accept that my illness is something that is part of my life. I know that there are people that have it worse than I do, whether it be with Sjogren's or other illnesses.  And I try to direct my attention toward doing something positive for someone else.  You have a husband and a healthy child...and you have love in your heart to share.  Your child doesn't have a definition in mind of how  his mother should be.  He just wants your love, and if he feels that, he'll be happy.  Sjogren's can't take away our ability to love.  Feel free to send me a direct e-mail if you'd like more positivity on a rough day.  A couple other things:  I have used systane drops for a long time, but a doc just recently suggested Alcon's GenTeal Tears gel.  It'll make your eyes a bit blurry for a little bit, but it's worth taking a break to use it for the comfort it provides.  Also, as far as your long lasting sore throats...I only learned in the last couple of years that those sore throats can actually be swollen parotid glands, and, as someone else mentioned, even a brief course of prednisone can get you back in the game!  You've got this, cmeeker!! Heidi

Hi! There is something you said that really opened my eyes, that my son doesn't have a definition in his mind of how his mom should be. I never looked at it like that. All I could think of was how he was missing out on having a healthy mom. Thanks for that

[heidiaj]

Hi, cmeeker!  I'm so glad to hear that you have felt some positivity in your life from having opened yourself up to the group.  Like I said, I totally got how you felt when you said no one understood how you felt with this illness.  Some of my best friends don't get it! Luckily, I just realized that I have one friend who knows someone else with Sjogren's, so she was SO supportive when we connected by phone yesterday.  But that is rare.  The good news is that when you come here, everybody gets it!!  YAY!! I'm glad that I helped you think differently about being a good mom to your son.  My ex left me when my kids were 4 & 3.  It was devastating.  I had all kinds of health challenges along the way....physically & emotionally.  But what my kids remember is the good stuff....all the love.  They even kid me about it, saying, "Mom!!  Too much love!" or referring to me as "smothery mothery."  They remember the love, the support (both my kids had mental health issues related to being abandoned, my son ended up in treatment for addiction, plus my son is gay), the birthdays, the holidays, family & friends gathered around us, and the hysterical laughter.  None of that required superior physical abilities (although holidays & birthdays took a lot of work!).  Now my kids are 28 & 29, and I couldn't be prouder of them or more filled with joy when they express their love & appreciation.  I made mistakes along the way for sure, but luckily the good stuff is more enduring. You'll be great!    Heidi (& again, feel free to reach out in a private message anytime if you don't want to post to the group)

[Nomad]

You might just simply try cutting back (not stopping) on things you used to do (at least for now).
For example, have a half a glass of wine instead of one or two.
Please talk with your doctor about possibly getting on a med to help with all the dryness.
There are potentially eye drops as well.
If it is extreme, you should do what you can to stop it from being extreme!
I always keep Biotene mouthwash nearby as well as sugar free lemon drops.

Recently I have discovered a lower salt diet seems to help a little bit.

Finally, if you continue to feel overwhelmed, if you haven't already, consider short term therapy. This is new and troubling. Sometimes we all need additonally support.

BTW, I suspect my SJS worsens a tiny bit in the summer.

Glad this group is helpful! Keep coming!!!

Wishing you well.

PS Just saw you got some new prescriptions!!! Awesome!!