Having a really hard time coping...

[irish]

I am glad that you have found some help from this site already. I want you to now that you are not unusual in your feelings with autoimmune Sjogrens. I started being ill in 1964 and did not get diagnosed until 2003 with Sjogrens. I got diagnosed soon after with more autoimmune diseases and am on IVIG for going on 12 years and also take Plaquenil.

I am glad you are pursuing the doctors. Getting some help for your eyes will ale you feel better. Many people are put on Plaguenil soon after diagnosis and this does help with the energy level and aches and pains. It seems like it is not working much until one decided to stop taking it cause we think it is doing any good. Most of us soon find out that it is doing more for us than we thought.

I do want to caution you about the groups you pick out to join for getting your spirit uplifted. It has been my experience over the years, ( I am 74) that often these groups can drag us down. WE go for help and uplifting thoughts and often the others are caught in the poor little me trap and it can make our lives more miserable. It takes time often to take the pulse of these groups and often one or two times of attendance and we will run for the exit.

You have gotten some really good advice here. The one thing we learn as we travel through life with autoimmune is that we have choices to make. The first thing we need to do it to make the choice to keep on pursuing medical help as long as we can. It is so easy to get discouraged and quit and just take to our bed. The better choice is to keep on keeping on til we get the help we need. Know that in spite of all the bad doctors we run into in your quest, there is one waiting in the wings who has your name on his to do list. It takes time to find the one that has what you need. It is a miserable job keeping up the doctoring, but what kept me going when both my hubby and I were discouraged was: I wasn't going to die until I knew what they were going to put on my death certificate. Well, took ne a while but I found out.

Learn to choose what is important to do each day. Your family is what is important and if the flood doesn't get scrubbed either hubby can do it or it can just wait. Try to learn to live frugally and make life simple. Bake in larger amounts, etc and freeze so that you are ahead of the game for the bad days. The one thing about autoimmune is that it sort of cycles with its bad and not so bad  to better days. Many of us never feel like we did before and learn to live with the new normal as it is called.

By living more frugally it takes the strain off the budget when there are doctor bills. Don't feel guilty about your bills because they help you become a healthier you. WE can't choose what life hands us but we can choose our reaction to our condition. Those around us will never get it so don't waste the time on the ones who give your trouble. Learn to just get along with them and spent your time with those who are more accepting.

Learn to accept that the not so good days often come in a flock to be endured. Rest as much as you can and and then some. Learn also that when you have a feel good day not to overdo. I have felt good on occasion. One time I felt really good for 3 hours and washed clothes, up and down stairs, scrubbed floors and my heart was singing. MY hubby told me I would pay for it. I told him everything would be find. Well, I think I did myself in for 2 weeks. It was not good. We certainly can't relive those old days when we had more energy.

Also, pick when you do your chores. For some reason I feel better after supper and often around 10 PM you would find me scabbing floors or folding clothes. It is weird but it has worked all these years. Come and visit often and know that you have come to a place where we are all in not the best health, but we always say that Sjoggies are tough and learn to keep going. The most important thing is to take care of your mental health along with the physical. Kow that depression runs with autoimmune disease and often we need to take antidepressants. Hang in there girl, You will make it. Good luck. Irish

[Ohiocat]

Another few things.   You will have times when this disease will stabilize and then times when it seems to get worst.   Some of these will just be flair ups that you will have to get through, others may be things you have to readjust to.   You will need to learn to just maintain and go with the flow of your body.

If you have not read it yet-- go look up the Spoon Theory.  And also let your husband read about the Spoon Theory.  It will give you an idea of how to cope with these type of diseases.  Some days we have less spoons than others.   You learn to save your spoons for the important things.   


And it will help you talk with your husband.  Talking will help your outlook.  And remember you can always vent here in the forum. 

[warmwaters]

Hi there - Sorry you had to join us because of a disease, but it's a nice group here.

One of the best tricks I learned dealing with this disease is learning how to set reasonable expectations. We all wander around with all these unstated expectations in our heads.  Stuff like "a good mom will play soccer with her kids", and " a good wife will set aside lots of time for her husband" and "a good employee will go that extra mile for a customer".  You may not even know you have certain expectations.

Some of them come from ourselves, some of them come from others.  For years I kept my mother's standards for clean in my head, and always felt like a failure, because I resented doing them so much. Backed off just a little (still pretty clean), and suddenly was much happier.

Having this disease has made made me a lot more aware of my expectations. I don't even have enough energy to clean, so someone else does it now. No-one likes me any less 'cause I can't do my own cleaning.

Your child will be fine. A child deserves the basics of life and love.  You know you'll be providing these. You'll find workarounds and ways to deal with whatever your limitations end up being.  This disease makes us very clever at making up stuff!

You're feeling sad and angry and that's COMPLETELY normal.  This isn't a fun thing. I sometimes compare it to being in a bad accident from which you have permanent damage.  The accident (heal problem) wasn't your fault, but you'll be dealing with it for long time.  Of course that's upsetting. 

Keep talking - we all have our ups and downs.  This is one of the best support groups I've ever seen.

[trejonina]

Hi, try turmeric 500 mg for your RA, pains and inflammations.

[luannac]

I'm glad your post is still showing.  I am a 58 year old female and I was diagnosed with Sjogren's Syndrome and RA about 7 years ago.  I, too, get very depressed when I am fatigued to the point of not being able to move or communicate with my loved ones.  I feel like these diseases absolutely such the life out of me on a regular basis.  I have a supportive husband and a great Rheumatologist.  However, it is so wonderful to hear from other people who are experiencing the same problems as I am.  No one really understands unless they go through this.  I have always been very,very active and worked since I was 13 years old.  I need to continue working until I'm 60 at least but I often worry about how I will make it until then.  I'm sorry that you are going through this at such a young age.  When I feel lifeless, I just try to tell myself that "Maybe tomorrow will be better".  I usually feel my best in the mornings but often the fatigue sets in during the late afternoons.  Please continue to post on this forum so you can be in touch with others who understand what you're going through.  We need to support each other because most of the world has no understanding of this.  When you feel so low, please post and let others lift your spirits.   Take care!

[heidiaj]

Hi, luannac! I'm glad YOU posted as well!  It says that you are a Newbie & only have one post.  Have you really had Sjogren's that long & just posted for the first time?  Well, I've had Sjogren's for 10 years & I'm only at the Jr. level.  It is hard sometimes to put yourself out there, even when you do read the posts of others who seem so understanding. But as time goes by, you realize how important it is to reach out to others who are trying to figure things out.  I know I should do it more (post), because I have done an awful lot of reading (because I don't work & have the time). I can totally relate to where you said you get very depressed when you're fatigued to the point of not being able to move or communicate with loved ones. There are times when I feel so weak, especially later in the day, and I feel hopeless & think: "Is this as good as it gets?  Will it all go downhill from here?"  But you are so right...we must tell ourselves that tomorrow may be better.  A friend of mine who works in the medical field lovingly reminded me recently that they are always coming up with new treatments for things.  And we need to come up with little ways to pat ourselves on the back. I have a list that I add to...so that I can see the little things I accomplish...to make me feel better.  (I have been on disability for almost 10 years now.) Recently one thing on the list was gathering things to give away, because the Big Sisters were doing a drive in the area.  And my doctor has been really pushing me lately to try to find some way to be physical, because I am losing conditioning in my muscles.  So yesterday I went & bought one of those thingies you wear on your wrist to measure your activity, and today I walked out my front door (& I don't go out much) & walked down to the end of my street & back.  It was 1/4 of a mile, and took 800+ steps, and it was a lot for me.  But I did it.  We're going to New Hampshire for a weekend soon, and I told myself I wanted to be able to walk around a little when we go.  So I set myself a small goal.  No matter how small they are, it's good that we set them.  One other note to you - I don't know if you live in the U.S., but if you do, know that  Sjogren's is a bona fide disability under Social Security now, so please don't worry about whether you can make it to age 60 working.  Even if you come to a point where you feel you can't work full time, but can work part-time, you may be eligible to collect partial disability.  I was a Human Resources Director for 24 years, so I know my stuff in this regard.  Just do what you can do as long as you can do it, and hold your head up high. I never in a million years thought that I'd end up disabled. But I wanted to validate to you that Sjogren's can make it so that you are unable to work, and that is nothing you should be embarrassed about.  And please keep posting! ~ Heidi

[araminta]

Hi, I can't add much to the excellent advice given above, but just wanted to say welcome to this forum, I hope you find it supportive and informative.   I have received a great deal of practical help and encouragement here.   I agree with the point that the first year of this is probably the worst, then you start to find ways to address symptoms, and strategies to make your life easier.    Some of these can be extremely simple, for instance I keep chewing gum in my mouth most of the time, you don't have to be chewing madly all the time and you can even keep it in the side of your mouth when you talk, but it does help with saliva.   I also agree that mindfulness and meditation are very helpful in keeping you balanced and stopping the panicky feeling (which as others have said NEVER helps!).   I use organic castor oil in my eyes at night, it stopped the horrible feeling of eyelids sticking to eyeballs

I hope you keep posting and let us know how things are going.

[Carolina]

One more suggestion:

The book How to Be Sick, by Toni Bernhard is very useful for everyone, including those who have a chronic illness and those to live with a person that has a chronic illness.

Regards, Elaine

[irish]

I have to add that I have never heard of anyone putting castor oil in their eyes. I would think there is a high chance of eye damage from that. Have you had this prescribed by a doctor. Just curious. Have you researched castor oil and how it is made?? Just curious about this also. I am going to check it out too. Irish

[irish]

I just read up on castor oil on Wikipedia and I am astounded at all the uses. I guess I would think that there are other oils that would work better or be more safe. There are the over the counter eye gels in a tube that work well. Some people wear eye shields at night to keep the air away from their eyes. I would wonder if the eye doc would know of some eye drops or oils that would work.

The fact that castor oil is made from castor beans which contain a product that ricin is made of. This is the powder that the terriorists place in packages or enveloped to poison people. Makes me nervous just thinking about it. Just my opinion. Irish

[araminta]

Irish:   thank you for your comments, and of course I hope it's clear I'm never talking as a medical professional, just saying what I've found helpful.

The ricin in the castor oil plant is apparently deactivated during the heating process to extract the oil.   To the best of my knowledge Restasis, prescribed to a lot of forum members, contains castor oil.   And when I saw an ophthalmologist and mentioned I sometimes used castor oil at night, she made no comment.

I use pure organic pharmaceutical grade castor oil.   

[irish]

There are quite a few meds that have some type of castor oil or derivative in them I learned when doing my research. It just seems to be to be such a harsh oil to use in the eyes as it is used mainly for stimulating the colon to have bowel movements. Thanks for the info you gave. Irish