I feel truly small talking about something like this with all the medical problems people are having around here. But I've really hit a funk and can't seem to get myself out of it. I'm hoping that writing it down and sharing it with friends who probably understand will help me deal with it.
I just joined Facebook and met up with many friends from my college sorority. Talking to them again is really great, but reading their profiles and seeing all the great things they've done, I feel like I have nothing to show for my life since college but two really great kids. Believe me, I know that they alone make life worth living. But so many of the dreams I had for my life ended the day I hurt my back in 1992. Despite many tries at getting my career back on track after that, the sometimes yearly surgeries then the development of what they thought was lupus but was really Sjs, a bad accident that made it necessary to get a morphine pump to live with the daily pain and bammm, there's not alot of energy left for doing much more than getting out of bed each day and some days getting dressed.
I'm also feeling helpless that I can't do something for my son who's in Kuwait right now and feeling pretty low himself. After training for a certain job and creating a strong bond with the men and women in his company, the Army just realized that the jobs they trained these soldiers for are already taken. So they're going to split everyone up and send them to different camps throughout Iraq doing totally different jobs. My son started as a generator repairman, became a prison guard, and now, if they don't change it in the next two weeks which is totally possible, he's going to be on a food crew taking food to smaller bases that don't have permanent dining facilities. And he won't be going with anyone he's become friends with, just a few guys he likes well enough and a few women he doesn't get along with at all.
I know he's a big boy and will work this out and make it through the 8 months ahead, but I feel so helpless. It's the first time I've ever been in a position where I can't do anything for one of my children. I also know this won't be the last time this happens, but the first time really hurts.
Once he has a permanent address, I'll be able to flood him with encouraging cards and boxes of goodies, but right now I feel stuck.
I can also tell that the steroids are kicking in. I'm tired and grumpy and all I want to do is eat. I'm still waiting for an infection to clear - this time an ear infection rather than bronchitis for a change, but my chest is starting to feel gooey and tight again, so who knows - so I can't get my 2nd infusion of rituxan which was due in early Dec. My rheum hopes that the flare I'm in will start to turn around once I get that infusion. Then hopefully, I can start working off the steroids and the overwhelming feeling of needing to eat.
Well, I'm obviously having some trouble with depression and will contact my doctor and therapist tomorrow. Thanks for listening and sorry for being such a downer.
Tracy
Hi Tracy,
You were right to come here looking for support! It sounds as if all of your circumstances have ganged up on you today.
You know that your old friends from college will only write on Facebook about their successes, and that all of them face disappointments, too. You may be the best mom of all of them, and the biggest hero for fighting and overcoming accidents, surgeries, and a chronic illness. You have raised 2 "really great kids!" They are more important than any career. I'm proud of you.
I hope things go well for your son in Kuwait. As a mother of 2 sons, I can imagine your mixed feelings about his wellbeing. He sounds like a resilient, talented young man who will be an asset to his new group. I know you can't wait to send him cookies again :).
I hope that you rest well tonight, and that tomorrow will be an easier day for you.
Hugs,
Cheryl
Thank you Cheryl. Your words mean so much to me after such a rotten couple of days,
Tracy
Hi Tracy :)
Being 'down' is a big deal. It's a big enough deal that we often need help to get out of it when it happens to us. If it's a real, deep 'downer' please ask for that help.
Like Cheryl says, you've done loads. You've brought up two great kids. That can't have been easy after having a bad accident and living with chronic pain. that's an achievement! Don't put yourself down!
I totally understand you being worried about your son. He's not only away and fed up - he's in a dangerous place too. My youngest son has just struck out on his own. He has a new job so he's moved away from hoke and I know that he's never liable to live here again and its a weird feeling. I also know, of course, that he's not in danger but I still worry a bit.
I'm sure your son will rise to the challenges he is facing and will thoroughly enjoy your cookies when he gets a permanent address.
Hey - baking cookies is an achievement when you're in pain!!
Take care - Scottie :)
Hi Tracy,
Yep, I know that feeling exactly. All of a sudden, no one needs me. :( Why did I get out of bed this morning? ??? But don't you feel down. You have probably achieved more than any of your sorority sisters. Like Cheryl said, they don't mention their marriages, their splits with this friend, or the loss of money or a child that won't speak to them anymore. All they are telling is the "wonderful" stuff.
I personally think you have done wonders with your life in spite of all the road blocks that have been thrown up for you.
I know it's hard when your son is so far away. I really understand that, as my son was in Rhyriad all during Desert Storm and quite a while before it all blew up. You are a good mother, that's why it hurts so much. If you weren't a good Mom, you wouldn't care where he is.
And yes, you should come here for comfort and understanding. Because we all understand what you are feeling and what you are going through.
I hope tomorrow is better than today and the day after is better than tomorrow. Hang in there Mom, he misses you just as much as you miss him.
Hugs, Pooh
Hi Tracy
Cheryl and Scottie are right, you have survived some enormous problems as well as rearing two wonderful kids. You have a lot to be proud of.
I know what Cheryl means about your friends only posting their sucesses - with some possible exagerations! I was a mature student and five years after we graduated there was a reunion. I was really excited to see some old friends. Guess what happened, most of them were so full of themselves, they were nothing like the caring fun loving people they had been previously. If they were'nt boasting about their wonderful 'positions' they were talking up their children's college courses. I came away from that day ashamed of ever having been part of such a bitchy group of women. So, don't believe all you read on Facebook.
My heart goes out to you over your son. It's awful not to be able to 'mend' things for them, isn't it? My youngest, who has health problems,along with two small children and a mortgage. is being threatened with dismissal at work because his call length (he works in a bank call centre) is on average 10 seconds above the time allowed. This is because he cares about his customers. However, the bank say, customers don't matter, just take 80 calls in a shift. He's sickened, and trying his best and there is nothing I can do to help him.
Just remember, we care for you and we value your opinions and messages. Keep your chin up.
I will keep you and your family in my prayers.
Kathyx
Thank you, everyone.
Today has been better. I still think I need to get in to see my therapist as Alex will be gone til Sept and I can't keep going up and down like this. The support I get here, though, is just as important as my therapist. You guys understand what it's like to live with the many peculiarities of this disease!
Your the best, Tracy
Tracy, I hope this feeling does pass soon. The facebook thing reminds me the letters I get at Christmas from the most religious relatives of my husband. It goes on and on about how well the kids (or grandkids) are doing and the awards in school/sports/whatever. How the son is now on the school board......which is true........(i also know he has a drinking problem from time to time.) So, these reports must be taken with a certain amount of cynacism. Often there is a very big slant put on stuff. Also, I'm sure no one posts their fat pictures. (i wouldn't.) One more thing, if facebook or whatever website makes you feel bad, maybe a good thing to stay away until you are feeling better.
Best, Lucy
Tracy,
Everyone has pretty much said everything that I was thinking, so I really don't have any additional advice to give.
However, I do know that feeling, I have it frequently. I had so many dreams and aspirations for myself when I was young -- I wanted to be a veterinarian, I wanted to live/work in Africa, I wanted to be married and have kids. None of that happened. I have no college degree. I work for the Federal Government. I live in Chattanooga. I'm not married, no prospects either. I have no children. My life has been a total failure. My 25th high school reunion was not very long ago. I didn't go because I didn't feel like going to Philadelphia. I read some profiles of some classmates: happily married for 15 years, 3 wonderful children, PhD in English, blah, blah, effing blah. Glad I didn't go. I didn't need anyone to point out to me that I was a failure.
Do you want to know something? I am very good at my job. I have people from different offices through out the country calling me asking for help with issues and procedures. My immediate supervisor asks my opinion about some things and takes it into consideration before making a decision. If I disagree with something, I can say that and not be afraid for my job. I used to teach Primary lessons to the children at church. I don't have children of my own, but I have about 50 kids that love me and miss me when I'm not at church. I am a talented writer. I have the ability to make people laugh. I am person who has the ability to comfort people without really knowing I've done it. It may be just something as simple as sitting with someone, holding their hand and crying with them; sending a note to say, "I was thinking of you today and it made me smile." When life gets to me, I sing Primary songs and that always cheers me up. Some of my favorites are "I Am a Child of God," and "If the Savior Stood Beside Me."
I am none of the things I dreamed I'd be. I've got health issues. I've got "Mother" issues. My sister is the most self-centered person I know, she only calls to upset my mother. Then I've got to deal with the aftermath of the storm. I've got the whole world on my shoulders and it's pretty doggone heavy. However, I wouldn't trade my life in for anything in the world. I love my job. I am a public servant, and I take that responsibility very seriously. I am a nurturer, that's why I do so well with the Primary kids--and why I have 9 pets. I don't like to see someone hurting or unhappy; I have to step in and help, even if I am told no thanks, at least I know I've tried.
I've come to realize that just because someone lives in a big brick house with a really nice view and drives a fancy car does not make them happier than me or better than me. I have no idea what is going on behind closed doors. Not very long ago, I found out someone I knew and thought highly of was abusing his family. They could have been the models for what a family should be, before we found out the truth.
I'm struggling financially, live in a double wide and drive a pick up truck; however, there are more items on my list under "what makes me wonderful" than there are under "what makes me worthless." I just have to carry the list around and look at it from time to time. Some days, it's glued to the back of my hand so I can see it while I work.
Think of all of YOUR accomplishments. Not what you wanted to do but didn't. Not what that cousin did or that former classmate did. Who cares? That may be nice for them, but at what cost? Are they truly happy and content with their lives. Or would they rather have a do-over. I've thought long and hard about the things in my life I'd change if I could have a do-over. Can't think of one single one. If I did anything differently, I would not be the person I am today. All of the mistakes were learning experiences. My life is no where near perfect, but it is certainly perfect for me.
I hope you find comfort somewhere in this ramble.
Teresa
Tracy
You have done everything by bringing your wonderful children in this world. You made the world a better place by doing so. :) The world is a better place by you being here. :) You will probably never know the good chain of things to go on forever because of you. :) :)
I am glad you are here though. It is normal when we all , and we all do have those negative , down days. :( Depression tries to raise its ugly head on us sometimes. >:( Help is there when you need it though, so it will not be allowed to stay. :)
God Bless
susanep
ah another tracy that my name :) it means the battler, guess that explains alot lololol
NEVER NEVER think you are useless, ppl always bang on and on about how well they have done, what is success and how can you define it ?? success IS 2 wonderful kids, success is the fact your son knows that he is loved and constantly in your thoughts, success is knowing your strenghts and weaknesses and accepting that your not perfect but working on it
" never fear perfection you ll never reach it " salvadore dali
when i found out about sjogrens i cried and cried, all i kept thinking was i had let the one si love down ...had i ?? , youve had enough strenght in you to raise to great kids, bring them up stereing them away from drugs, alcohol , crime thats success these days, on telling my 13 year old son, i said i feel like i have let you down, he said( he is way beyound his years ) i am sitting exams a year early , i am vice school captain, i am head of my year for 4 subjects and top 10% in the rest , i am happy and i am loved, youve given me alot and you ll neve rlet me down , that made me cry more and its words on my bad days i hanign onto with a tight grip, i doubt all the success is genuine success like successful relationships with our kids, the love in our lives , its never our succes we grow from its our mistakes and our trials, and im always learning :0
take hope and keep it close
T xx
Once again, I am touched by your words.
When I feel so down - sometimes brought on by my own thoughts, sometimes brought on by a jab from my husband - it's hard to remember those things that "make me wonderful". Yesterday, my husband and I went to the doctor together as we both had to see the ortho about one of our knees. Afterwards, we went to the grocery store and I suggested we pick up something special for dinner and he agrees and we shopped together as we used to when we were dating. On Friday afternoons, we'd head down to his place after work (we worked together) and always stop to pick up something special and I said to him yesterday that it felt like we were dating again.
Well, we got home and I was excited to start cooking together, when he told me he only had and hour because he was going out to the church to help with the new building. Now I have no problem with him helping at the church, but unless he's working, he's there Tues., Thurs, and Friday evenings, Saturday mornings and Sunday for Church. We only have on car, so when he's at the church, I'm stuck at home. I said something to him about how hurt I was and he came right back at me and said, "Do you know how many nights I sit here and watch you sleep when I could be doing something else?"
That really hurt - first of all, because I know I haven't been sleeping all that much. It's about 4:30am and I'm wide awake. And most evenings we're home together, I sit and watch TV while he sleeps on the couch or spends hours on the computer.
I knew how unfair what he said was, yet it plunged me right back down into that hole that I seem to be constantly trying to dig myself out of.
But you all here are great boosters when that hole gets too deep for me to handle. You give me a hand up so I can see the blue sky above
the pit and I thank you so much for that.
Kathyx- I'll say a special prayer for your son that he either keeps his job or finds a better one. I know how hard it is to try to struggle on one salary and have that salary be in jeopardy. My husband lost his job several years ago because the boss said he wasn't working fast enough. Fortunately, the state said the firing was unfair and he was able to collect. But we lost our health care benefits, and ended up having to file for bankruptcy because of the bills that piled up in just 9 months without insurance.
As for facebook - Lucy - your comparison to those annual Christmas letters is so true. I've decided to back off. I'll use it to get in touch with a few friends that I lost contact with because I'd like to know they're ok. I lost contact with my best friend from college for about 3 years. When time came for a reunion of the college radio station, I asked if anyone had heard from her, and another good friend had to be the one to contact me and let me know she'd passed away in childbirth just a year and a half earlier.
Well, I'm sorry to ramble on so. I guess it's time to try to crawl back into bed and see if I can pick up a few more hours of sleep.
Thanks again to all of you for being my friends,
Tracy
What wonderful people you all are! I'm sitting here at my computer with tears streaming down my face, giving thanks for the love that we all have to spare and to lavish on each other. Tracy's right - we are all friends, true friends. It doesn't matter - maybe it's a bonus - that we live in all corners of the world, and that we'll probably never really meet each other. When we need each other we are there, with warmth and honesty.
I'm overwhelmed by Teresa's post - by your honesty and open attitude. What a journey you've been on! To be able to say 'I'm none of the things I dreamed I'd be' and then to face honestly the losses and the gains. You're amazing and you're living a good life, the perfect one for you. How difficult it is to find the humility to accept the situation we are in, but how necessary.
I'm still reeling from some challenging/scary health-related news I got on Tuesday (cardiac, not connected with SjS) but you've all helped me get things in perspective. As always!
With love to all my dear Sjoggie friends - Chana
Every post in here is beautiful. Knowing everyone here has truly enriched my life in ways that are impossible to recount.
Last night I went to one of my regular prison meditation groups and when we were having our discussion afterwards, I found myself drawing on lessons learned in conversations here - the group I met with was weighted with older inmates, facing some serious health issues. As I was leaving, one of them said how much they appreciated the discussion, and that they found it strangely comforting, even knowing they would have to continue to deal with the medical issues. Many thanks to all of you for your collective wisdom. As we each face our own unique troubles and report honestly on how it's going, we have created a really strong web of support and caring not just for ourselves, but for everyone our lives touch.
Tracy, I will hold your son in my heart; my son was in Quwait and Iraq and I completely understand how difficult it is for you not to be able to do more for him. Chana, I hope your cardiac issues are ones that can be dealt with straightforwardly. Thanks to everyone for being here.
Take care, folks.
Genko
do you know i am sat here i actually thanking the god and goddess that i have this illness if it means that its brought me into the lives of ppl who truly care, even in their own suffering they care and care more, i agree with others truly gorgeous light filled ppl in here, and im truly humbled to be part of that, if having this syndrome means it brings ppl like this into my life then i am truly grateful, a week after diagnosis and i am sat here thankfull, last week the world was at an end this week i am seeing a whole enw world openning up to me
thankyou thankyou thankyou in an unmeasurable way
T xx
Tracy
Thank you for caring about my son too. Genko and T are absolutely right, we all need each other. Where would we be, if we were still in the wilderness of thinking no-one would understand how we are feeling.
Thank God for the people who provide this safe, comfortable and loving place to come, not only at our times of need, but when we just want 'to be' with others.
Chana, sending you my best.
Kathyx
Wow! Tracy bless you.
The thing about these words we (you all) place here, is that they speak not only to the heart of one, but all who set at our table of comfort.
Tracy you need to find the right time to tell your husband that the investment of your relationship is priority. Just gently and in a small amount of chosen words.
Our church building consumed a lot of time of many people for about a year, I was thankful for the service of many. And glad when it was over with.
My husband as pastor leads by example. If he gets a wedding date request that falls on a birthday or anniversary its a no deal or they reschedule to another date and thats their 1st premarital lesson on relationship priorities.
Your husband needs to know that his support is the most important support in your health issues. Thats the right thing, for him, to serve you in love, understanding your needs.
When you come out of your slump you will be inspired by his giving, to support l him like wise. OKAY ...I've said enough in that regard. :)
When you were reflecting on occupations and accomplishment on face book. I had to laugh once again because.....
On our own sjoggie forum where every one tells their works. Many, Many Many impressive occupations and successes. I was so proud and was reading them off to my husband. I came to the one- (One of our funny boys we love and laugh at) By the way I told my husband the men in this forum really lighten us up.
He said he lived down by the River in his car and he was a motivational speaker.
This is Chris Farley's of Saturday nite live classical skit of great comedy. I laughed and laughed. Kudos to you men of our forum. I luv ya everyone.
Tracy I am so glad you are doing better. You are a part of us. SJOGGIES thats really big. You are you, uniquely created.
Your son and all sons and daughters who were lovingly raised and serve our country are in my prayers.
Peace and love kimbo
maybe im a little late but i just joined today and this post just screamed right in my face. since i found out i had rheumatoid arthritis and sjogrens syndrome, ive felt like a worthless human being. i never knew how much i needed my knees, elbows, wrists, etc. there are so many things daily that ive done in my life that i can hardly do right now and though they are simple, they are important. im leaning on close ones right now which makes me feel guilty though i shouldnt..ive got 3 kids and my youngest is 7 mth old..and im not able to hold him much, pick him up as hes laying down, etc. its rough. there must be a light somewhere though...im doing everything i can to stay above water and take things slow and accept the way things are going. worthless is a good word for what i feel deep inside though ~ :-[
truly give yourself a break, i can truly understand the guilt your feeling , but you didnt ask for all this, infact who would ? you werent to know and you didnt have time to get your head in anyways round it all, worthless?? no just different .worthless mean of no value or no use, i doubt your kids would view you that way, if you dont like yourself in your eyes, try looking through theirs for a while :) what you are is in the grieving process , and its a scary mind bending time that would truly mess up your head, you dont have family near and your got 3 little uns and so far your all still muddling through, its hard enough dealing with symptoms without the guilt, give yourself a break seems to me youve found this place so you were doing something about it all, that was practical , your looking into ways to modify your household chores, your doing alot of mature well thought out things at 21 , id have tipped my hat to you when i was 21 and still would, take a deep breath and decide to accept this int your doing, blessings to you
T x
Tracy, Boy, you have certainly had some wonderful posts from your great friends on this site. First of all, we all do feel worthless at times. I know that I have not done even a little bit of the stuff I had dreamed of doing when I was young. The important thing for all of us to remember is that we have accomplished a heck of a lot in spite of having to drag our health issues around with us. As far as the old friends from the past---boy, what they say and what they do are certainly 2 different things. I hate class reunions---they don't get good until people get old and have lived through trouble.
I know that you worry about your son and with good reason but he is resilient and will have made friends in the different places he goes. He has had a lot of change in his life also and I would bet that things will change for him again. Just keep him in your heart and prayers and be a positive force in his lifee. I know he will enjoy the cookies that you sent him. I think a lot of moms send cookies and they all share. I will keep him in my prayers also. It is hard to let kids go but they must "fly" to mature. Harder on parents than on the kids though.
It was good that you got to spend some time with your hubby. I think a lot of men have a hard time accepting a wife's illness. They act tough etc, but in reality they are mad at how their life is impacted by our illness plus they are scared they will lose us.
Hope to hear that life gets better for you---so many good thoughts shared here today that you must feel warm and fuzzy. Hang in there cause you have been through a lot and yet you continue to keep on keeping on. Hugs IRish ;D