I've suddenly been hit with emotions of being diagnosed with this disease and am having a very hard time dealing with it.
I'm actually a very upbeat and happy person and even after my diagnosis in 2009 at the age of 21, I was still good with everything and had a "bring it on sjogrens / this disease isn't going to rule me" kind of attitude. Always seeing my rheumy and GP religiously and giving them bland answers.. But a few weeks ago my gp sat me down and was brutally honest with me, saying pretty much I am NOT OK. This disease is going to rule me and i need to take it seriously. And be more forthright with my symptoms so they can help treat them when they are new and not advanced. I have Arthritis, ILD, neuropathy since my diagnosis in 2009. I am also being watched for SLE and RA as some "blood tests" are coming back with the potential.
I've never really sat down and thought about it. I take my meds and sleep lots.
How do you deal with knowing you ( most likely ) will feel this way for the rest of your life ?
How do you deal with knowing this disease is a ticking timebomb and every time I go to the doctor something is abnormal or borderline functioning?
How do you deal with friends and family dropping like flies because your always sick and tired?
How do you deal with the fact you will have extreme difficulty dating and having a normal marriage and family? ( or the debate of Should you even have children etc )
How do you deal with being in your mid twenties with this disease / these problems. I can relate better with seniors then people my own age
I am so so so down.. And trying to keep a poker face for the holidays. But really I feel so lost.
And yes i did try a support group a year ago and it was no help. Mostly seniors talking about arthritic shoes and sharing recipes.. was NO help for me at all.
Sorry again for the pity party, i just need some emotional guidance.
Sorry this is so long.... First take one day at a time, if that's too much, take it one hour at a time, it's that's too overwhelming, take it one minute at a time. Stay focused in the present moment and avoid dwelling on the past or future. Friends and Family, that's a tough one. But if they don't stand by you then maybe you never had them. There are new friends to be made, spend time with healthy people you can trust! Get involved in activities online where it won't matter if you don't show up for weddings and funerals and a disability/illness won't be so obvious. Work on creating as many positive experiences for yourself as you can. You still have a life to live, and whether you're sick or not, you've got to find something to enjoy every single day. The world is rich with so many interesting things to learn and enjoy!
Everyone has problems, many people have more serious problems than yours. Think of people who are less fortunate than you are. Make a gratitude list of all the things you have going for you and read it over when you find yourself feeling down. While it's ok to talk about your feelings sometimes, keep yourself as cheerful as possible for your sake as well as those around you. Smile even tho you don't feel like it because sometimes smiling helps you actually feel brighter inside. Remember there is always something you can succeed at no matter what your limitations are.
You are going through the stages of grief, denial, anger, bargaining, depression, and last you will reach acceptance. You can make peace with your illness. You can take it seriously and after you've done all you can to take care of yourself, let go of it so it doesn't dominate every waking moment.
The biggest concern I see expressed in your post are social concerns. You need to build a strong support system of healthy people who will be there for you. Think of yourself as a winner and not a hapless victim. Remember everyone has problems even the people who appear to have an easy life. Life has it share of adversity, no one should expect it to be easy. But life is good, every day is good, trust me on this one! :)
Bigb00,
I know how you feel. I am 41 and have had a severe case of Sjs, plus other assorted and not fun ailments... but I do these things to deal:
I realize I am actually fortunate in many ways: family, friends, job, etc.
I pray every day, expecting that God's grace will get me through the day - it does!
I don't dwell on how sick I am (most of the time, anyway ;) )
I rely on ONE good doctor to help manage my symptoms and take me seriously. This is a must for me...
I focus on the things I can still do - short walks with dogs, an occasional trip to the store, etc.
It will be OK. This feeling will pass, change, diminish, come back again. It will still be OK and we'll be here to listen.
God bless,
KellyG
I was just diagnosed this year, so I am still going through the stages you are. I am fairly young too (32) but I'm sure I've had this for many years. I've battled fatigue for many many years, joint pain and swelling and for the past four or five years a dry cough - all warning signs but I didn't know what they were...I was so used to them, I just assumed they were normal for me.
I have dealt with my diagnosis and hair loss (which has been harder for me to deal with emotionally honestly) by seeing a psychiatrist and having my depression and anxiety treated. I went from being unable to function to feeling mostly like "myself" with the proper medications. Having a good support system is also so important - my husband is wonderful and I have two young children that depend on me and that keeps me going even when I feel like crawling into bed and ignoring the world :)
As for having children - I am SS-A positive and I still have two healthy children. The SS-A antibodies are the ones associated with congenital heartblock and neonatal lupus, but both of my babies were born completely healthy. I, on the other hand, did have some problems with my second pregnancy (subchorionic hematoma, preterm labor but she made it to 39.5 weeks) and I had complications from both c-sections (including an infection - I seem prone to infections) but I wouldn't let my SjS, had I known, stop me from having children. They are the greatest joy this world can possibly give to a person :)
Good luck, and I hope you are able to find some peace with your diagnosis.
I'm so sorry you're having such a hard time right now. I was just diagnosed so I'm going through a lot of the same feelings that you are, and I'm 37, not 25. It's not easy but at least we have a resource in this site and each other. I find that coming here really helps so that I don't overload my friends and family.
My eldest son has mild asperger's syndrome, and I remember going through a lot of the same feelings when we got his diagnosis. There is a poem you can find online called"Welcome to Holland", it's about having a child with a disability, but the message is still relevant for us here. If my son hadn't had this we would have met different people, and done different things. Life would have been faster, I think, and I don't know if I'd have chosen homeschooling or not. I'm so grateful, now, that my life turned out the way it did. He's an awesome kid, almost 16 now, and doing great. I wouldn't change a thing.
I'm sad and overwhelmed right now too, but I know that I'll find a way to cope and go on. Life changes all the time... I've found a lot of help and peace in reading some Taoist and Buddhist teachings, the " Tao of Pooh" is a really fun easy book. Is there anything you have found that helps
you feel more clear and calm?
Take care
Hey, by the way, thanks for writing this. After I read the responses, and wrote my own, I felt better. I actually got the motivation to get up and start cooking. ( We've been eating way to much easy type foods.) thanks again, and I hope you feel better too. :)
Geesh. You have a "downer" dr. We are down enough on ourselves without have the dr do so too. I am not saying to be upbeat all the time but having a doom and gloom attitude sure doesn't help either.
My -ologists usually tell me I have a good attitude about it all. I keep them aware of what all is going on, ask questions about stuff and ask "where do we go from here". I deal with things when they come up and enjoy my life inbetween.
I already went through an emotional "hold up" once when a dr told me he was sure I had cancer but I wasn't sick enough and to run to the emergency room if I got certain symptoms. After about 3 mos of waiting for the sky to fall in, I had enough and decided to take things as they come and deal with it then.
As to friends, family, etc. : most people have not had to deal with a chronic disease personally or with a loved one. The ones that do understand and "get you". Hey I have always related with those older than me better too! 8) Normally older folks been there, done that, unerstand and don't have the "airs" that the younger set do. I guess it is called Life Experiences. When I was in my 20s, I was working & living at home to help my folks with expenses as my dad was disabled when I was a teenager and I grew up with SS $. With no help, they could not live on SS with their medical bills!!! So my "life experiences" began early.
Bigb00,
First, let me welcome you to the site! ;)
I'm sorry that you're having such a hard time dealing with all this right now. Most all of us go through some of the same feelings, and it's just difficult.
It sounds as if your doctor was being helpful by letting you know you must let them know about all your symptoms, so that they can best help you. That seems very positive!
Now, about the part of it "ruling your life"~ Yes, it may mean that you will do things differently than you planned, and yes, it may mean that you will need to take medications but Sjogren's and all the related "stuff" doesn't need to totally rule your life.
So...in regard to your questions:
You may deal with this for life, but you can feel better and learn how to better manage symptoms.
This is not necessarily a ticking timebomb: sometimes we have more issues and we eventually learn to go on with it.
Certain friends and family may understand, it may take others longer and some may never understand. We learn who really cares about us. (there's several topics about this hear if you do a search)
Many of us go on to have marriages and families and make it work.
Please know that we all care here. You can cry out, vent or do whatever you need here. This is a warm and welcoming place where we understand. Feel free to come here and feel at home.
Keep us posted. We look forward to hearing more from you.
Take care.
Melinda
I am now 68 years old but have had sjogrens and myasthenia gravis since at least age 20 to the best of my knowledge. I was sick a lot but never got any help from the docs and I was 60 years old before diagnosed with sjogrens and 63 before diagnosed with myasthenia gravis and a few other autoimmune diseases.
All I know is not knowing that I was really sick didn't seem to be a problem cause I could only do what I could do. In other words, you will only have so much energy and you learn to plan your life around that premise. You rest a lot and you learn to entertain yourself at home cause there isn't much energy left for socializing. That is just the way it is.
I can't answer all your questions, and the ability to have a child is a very important one for women. You will not know until the opportunity arises with marriage, etc. Do not rule it out. There are new meds coming down the pike and autoimmune can also become quieter at times.
YOu probably think that this is really sad---and it is--to a point. The whole thing is that we all have to learn what we can tolerate and live within those boundaries. We can make some friends, like at church, etc, and do occasional things, but trying to set the world on fire is not in the cards---and that isn't all bad.
I had 3 children and the first pregnancy wasn't the best, the second one was pretty good and the third one was just terrible. I was sick the whole time and had to quit work, suffered from back pain/sciatica big time and could hardly lay down or sleep, just about everything you can think of. I only gained 10 pounds. After delivery I was not in very good shape but I just kept going and doing the best I could. I did not worry about my health or ability to have a baby cause I didn't know I was "sick" just knew I felt lousy and weak a lot.
The bottom line is that autoimmune disease is truly a big pain in the patoose, but it could be worse. There are so many people who are in so much worse shape and who can do hardly anything, or who have to live in a nursing home.
You are so lucky to have such a caring doctor. He did you the biggest favor and kindest thing he could when he challenged you about your autoimmune issues. The thing is, tell him what is up, follow the treatments, take care of the depression that you WILL suffer from (depression is rampant in autoimmune and especially sjogrens) and rest and take care of your body. You will not have the life you planned on, but I can guarantee you that you will meet so many great health care workers along the way. Also, ask for help when you need it as there is no shame in that.
You will also gain a maturity beyond your years because your suffering will make you so much more aware of what others go through. You will find that you will be able to help others by your words of wisdom and knowledge as you travel this pathway. Do not fight it, embrace it, for down the road you will find that you have become better than you ever expected---in ways you never thought possible. We do not fail if we but try. Good luck. Irish ;D
I was diagnosed with Psoriatic Arthritis (autoimmune, similar to rheumatoid arthritis) when I was 24, although I had been dealing with the symptoms since I was 17. I wasn't diagnosed with Sjogren's until two years ago. (I'm now 52.) I really think I've been dealing with both psoriatic arthritis and Sjogren's for many years, maybe since I was a teenager.
In spite of the fatigue, joint pain, and everything else, I really feel that I've lived a full, blessed life. I've raised 3 wonderful childre who are now 24, 21 and 20, and I'm very thankful to have each of them. I'm married to a wonderful husband. We've gone through rough times with career, stress, etc., but God has wonderfully provided for us financially.
I will say that my arthritis go worse after each child was born. I did well during pregnancy, but after my third was born, I went on Methotrexate, which helped me tremendously, so that the joint pain was not too much of an issue. I was on that for 11 years, then Enbrel, and now am on a combination of meds, which you can see in my signature. I always took a nap every day while raising my children; they watched a video while I napped for about an hour. I couldn't do yard work or many sports, except swimming, but they just knew that I couldn't do certain things. I would not trade having them for anything. In fact, my youngest, who is a college student living at home, is by nature and by God's gift to me, one who loves to help and meet needs. So he is a huge help to me, and actually enjoys being a help. Next year, he will probably move into an apartment near the unviversity campus, and I will miss him but am glad for him to have the opportunity to live with some friends adn do away with a 30 min. commute.
The fact that you are on Plaquenil in this stage of your disease should help the disease not to progress as much as it otherwise would. Be aware of what's going on in your body and let the dr. know so that they can keep things under control.
I am much more tired from the autoimmune diseases now than I was when my children were young, and the joint problems, dry mouth, etc., have gotten worse over the years, but I would not change the way my life has gone so far. The important thing is to be aware of what you can handle from day to day and week to week, then try to balance of doing what you can do with what you would like to do or need to do. And don't expect that many people are going to understand what you're going through or why you need to say no to something. A few will really understand, and be thankful for those.
Hope this helps.
Becky
thanks for all this guys! made me feel a lot better
bigb00,
I'm glad that we could be of some help. :D It's a very encouraging bunch around here.
You'll have your ups and downs, like us all. But remember as you ride the rollercoaster, we'll be hanging on with you!
Melinda
Have you ever written poetry? You know how easy it is to write free verse? How much harder to make things rhyme? Harder still to write in iambic pentameter? Then you move on to haiku? Seventeen whole syllables to work with! There can be great beauty and creative freedom in each form of poetry, depending on the skill of the poet. We are poets of our own lives. Some people in good health get to scribble in free verse. It is easy, but often too easy. People don't work very hard to make it beautiful; they just dash it off and move on. When you acquire illnesses and disabilities, you get greater constraints due to fatigue, or challenges in doing things, or depression, etc. Nevertheless, poets with greater constraints can still make beautiful poetry, and that is our situation. We can work within our constraints and find our personal freedom. We have to rework things over and over, fine-tune them, find our freedom within our limitations.
It isn't easy, but the rewards are sweeter in the end. Hang in there!
I hear ya'. totally there with ya'. What do I do to deal with it? I get really ticked off at God and give him a piece of my mind. Not that he seems to be listening ... but that's what I do.
I deal with this things by charging straight ahead and finding out all I can about SJS. i find it helps me to know about what I'm dealing with. i don't just rely on what the doctors say. Some are not to forecoming with information. Then I try to help my family understand what I'm dealing with. Some get and some do not.
Have you ever written poetry? You know how easy it is to write free verse? How much harder to make things rhyme? Harder still to write in iambic pentameter? Then you move on to haiku? Seventeen whole syllables to work with! There can be great beauty and creative freedom in each form of poetry, depending on the skill of the poet. We are poets of our own lives. Some people in good health get to scribble in free verse. It is easy, but often too easy. People don't work very hard to make it beautiful; they just dash it off and move on. When you acquire illnesses and disabilities, you get greater constraints due to fatigue, or challenges in doing things, or depression, etc. Nevertheless, poets with greater constraints can still make beautiful poetry, and that is our situation. We can work within our constraints and find our personal freedom. We have to rework things over and over, fine-tune them, find our freedom within our limitations.
It isn't easy, but the rewards are sweeter in the end. Hang in there!
Self-Pity, we all go through it. Try not to let it overwhelm you as trying to cry can be extremely painful. With the unrelenting pain we have a challenge with depression. For depression we need to see a professional. One clue you may be depressed is when you are watching a comedy and tears are trying to flow out of your eyes with no sign of stopping and no laughter. Yes it does over whelm and once every few months it may sneak up and catch you when you are not ready for it. Some times you can take a weekend off for a planned session. Take care of yourself.
Quote from: slccom on December 30, 2011, 12:44:47 AM
Have you ever written poetry? You know how easy it is to write free verse? How much harder to make things rhyme? Harder still to write in iambic pentameter? Then you move on to haiku? Seventeen whole syllables to work with! There can be great beauty and creative freedom in each form of poetry, depending on the skill of the poet. We are poets of our own lives. Some people in good health get to scribble in free verse. It is easy, but often too easy. People don't work very hard to make it beautiful; they just dash it off and move on. When you acquire illnesses and disabilities, you get greater constraints due to fatigue, or challenges in doing things, or depression, etc. Nevertheless, poets with greater constraints can still make beautiful poetry, and that is our situation. We can work within our constraints and find our personal freedom. We have to rework things over and over, fine-tune them, find our freedom within our limitations.
It isn't easy, but the rewards are sweeter in the end. Hang in there!
Thank you very much for your way of expressing what we do with physical challenges. I'm going to print it, and post it on my bulletin board, to remind myself that what I do in meeting challenges has worth, and defines me as a worthwhile person. It will also remind me of my friend who was severely limited by RA from childhood.
All the best,
Soycoffee