i have been in my pjs all day and its so pretty outside and warm.. yest i did a few thngs-went to a craft fair and out to lunch w/ my mom and friend and came home and slept over 3 hours..then i had to make myself get up cause i knew i wouldnt be able to sleep through the night if i didnt.. i could barely move..
just venting everyone.. i hate being so depressed and not feeling good. and i want a new left eye... it is so dry and hurts.. just needed to vent.thanks.. tired of all my bad days.. and i know being in this funk just makes me feel worse.. so what to do?
We all go through this from time to time. Mine was yesterday and the day before. Today is good. Feel better Val! Tomorrow is a new day :) (((HUGS)))
thanks missy.. i needed that.. :)
Yes, tomorrow is a new day! I hope yours is much better than today!
We deal with so much pain and discomfort on a daily basis, that when we get a flare, we do get depressed. I believe it is only normal. It brings us down. Making yourself go and do things is good. You seem to know how to handle this. Im glad. I hope you feel better soon.
Luna
thanks everyone... love your name Luna... reminds me of a girl from a soap i used to watch.. very cool name..
you are right.. i should have gotten dressed and at least went to a discount store or something.. just to get out... o well.. we all have our days huh.
A note to anyone and everyone. I suffer from depression. If you feel it too Please come and vent. We will listen and support you while you need it. Tomorrow isn't always a better day. Some of us have a progressive illness. However, With support, time, and understanding it is worth living.
Some days just hanging in there is all we can manage. I come here when I feel depressed, too and all of these wonderful people are supportive and funny and taking everything philosophically. It is extraordinarily heartening.
I also see people with way more problems than me. I am working full time, and doing almost all of the things I ever did. Slower, dryer and tired-er, but still doing. Makes me very very grateful.
This forum and these people are an oasis in the SJS desert.
I think a person with SJS can help but be depressed some days. All the aches and pains we have to enkure is more than we can take sometimes. And after feeling pretty good for awhile and then all of a sudden you feel lousy who would not get depressed easily. I know I do. I was doing good but in the last few days my feet had started to hurt badly and I may having a tooth go bad and all of a sudden colon troubles.
thanks everyone and esp Piebird.. i couldnt agree more..tomorrow is always a new day but not necessarily a better one.. thanks for letting me vent.. i cant vent anymore to my mom-she cant handle this-i have written other posts on this ..it just upsets her too much-its been 5years for me.. she is a good mom but cant handle it-she has epilepsy, breast cancer survivor and used to get migraines since age of 12..
my sis is there for me -but she is a social worker and listens all day long to people & has 2 small kids..
thank God for this support group.. I love you guys for trying to help..and you do help by listening.:)
Hugs to Val
There's always a crappy tv show or something on, I can look at them and say I fell like heck but they've got it worse! Like that tv show where they get the blood results and they aren't the baby's dad they thought or something. Zombieland was just on, that's a good movie, pretty entertaining. 4 Humans drive around and kill zombies with big guns. I've been watching a lot of Science and Discovery Channel. I like the one called "Oddities" there's some wierd stuff in their shop and lots of people! THere's a guy obsessed with bones. And there's the former model, former mortician, and now a clothes designer, she comes into the store to buy stuff. The sword swallower came in, that was a neat trick. History Channel is good, I feel like I'm learning something. If I'm achy and sore it gets my mind off my pain and feeling crappy and sorry for myself and kills some time.
I think it would be "abnormal" not to get down.
But, Val I am so happy you got to go to a fair and have lunch....wow. Of course you were tired! Did the fear come at the possibility you would not be able to sleep? I know for me once the cycle goes wacky ...I get really upset (it can put me into mode = flare). I hate waking up late.
I was just telling my daughter (18yrs) that I hate this rut. I do know that sitting in the sun or just an errand in the car helps me. If you sit for 10-15 mins. with you head so that the sunlight can enter the retina (but, not looking at the sun....just gaze in the suns' direction) your brain creates serotonin and endorphins. Music does the same thing. LOL so sometimes I use both!!!
This does not work through a window. And if you walk same thing (my goal for the spring....talk about self-medicate)
yes music usually does cheer me up.. i love it!
I cant really look in the sun even w/ my dark shades. im very photosensitive but i try to at least open my door and step out for a minute.. now when it gets super hot here i cant -like 110.. too hot.. and i hvae passed out.. such issus.. You know what---i could and just spray myself with a hose in my backyard... i have to stop saying "i can't " and focus on what "i can " do.. gosh just writing this made me realize that! thanks!!!!
i think i slept somuch cause my allergies are very bad here-eyes so dry and itchy and headaches every morning-tree pollen.. but the good news is i get my 6 year old niece from school today from 2:30 til after 5pm! she is somuch fun~!
The depression is the pits...many days, like you, I can not make myself get out of the house. I have found though, if I can at least get in the car and ride around for 10-15 minutes I feel remarkably better. doing this, you don't even have to get out of your PJs if you feel like you can't. Maybe when you return you will feel well enough to put on some real clothes. If not, at least you will feel some better.
Hang in there...as I give you advice, I don't heed myself at times.
I understand the Momma thing too. My mother is no longer living, but my daughter (34) wants to hear nothing about my SJS...partly because she doesn't want to admit I am sick and the other part, I think, is in shame as she has told me for the 3 or 4 years prior to my diagnosis that I was a hypochondriac...not just to my face, but in front of her friends, family etc.
hi belsey ..nice to meet you.. im sorry about your daughter.. i think like my mom who is 66--they just cant handle we are sick.. at first my mom was so nice & understanding .. but she told me she cant handle it anymore..
funny thing is my mom always says i bring up my illness everytime we chat. i called her today and again she started in on her arthritis and tiredness headache.etc.. i told her i hoped she felt better and i said my allergies were bad 2.i just made a joke that i was going to keep the excedrin next 2 my nightstand to pop every morning wheni wake with a headache around 5am..
its like she can complain everytime we talk but maybe she complains and .lets it go and i dont... i dont know..
i know what u mean about people acting like ur a hypochondriac.... everytime i mention something new most of my family says im doing too much research on the internet or looking for things... some of that may be tru but usually it is something new
all i can say is thank God for this board...
and yes i do need to get out even just for a small drive or take out the trash-go to cvs. drive for a few min ... anything...
I also feel sorry for myself a lot. It is especially worse around my cycle. I layed in bed all weekend long and cried today both on the way to and from work. Everything is bothering me. I got upset at work, took the wrong students at the wrong time, dropped my lunch down the front of my shirt and it fell on the floor and then I work with a woman that thinks she knows it all......
So I can't talk to my mom either. She can talk about things but then it is all about tough love with me..."Get over it", she says, "Live with it." I love her dearly but I wish she would just be supportive.
My bloodwork is still not in yet and my stomach is just in knots. Yep, I am making myself worse. I can't help it.
I agree that this is a wonderful place to come and chat, cry and laugh. Thank You!
Val, I hope we all can experience a better day tomorrow.
Winnie
omg Winnie.. my mom tells me the same thng."get over it.." "learn to live with it".. omg.. iknow she means well but sometimes i just want empathy... i dont work anymore and that prob makes it worse but with my eyes there is no way.. they hurt 99% of the time.. o well..
hope you hve a better day tomorrow.
I have been struggling with depression for the last few days and reading this made me (really really want to) cry. If only I could! And then there's that to make me feel just a little more down.
It's really nice to see the outpouring of support here and know that when I need it all I have to do is post. Sometimes I feel so alone in this, but all I have to do is log on and see that I am not.
Hi...just to clarify. I don't look into the sun. I look off just below the sun early in the morning or in the evening when it is weak. I do cannot tolerate much direct sun. It is the light waves that have the neurological effect and why it is not effective through a window. Glass blocks the ultraviolet....so in a car I will lower the window so the waves enter my retina (one is enough) and blast the heater in winter/ the air conditioner in summer. But, I try to take advantage of the sun light waves whenever I can. I will sometimes sit under a tree at the edge of the shade or in some shaded area (with my legs in the sun for VIT D skin absorption) for natural light therapy. 10-15mins. minimum. And for me anything over 76 degrees and I start to feel really unwell and nauseous.
Below a tip of the hat to fatigue and depression.
Conclusion. In pSS, lack of stamina and/or depression cause a higher level of individual and societal burden than dry eyes and mouth. Fatigue and depression deserve more recognition as treatment targets in pSS.
http://rheumatology.oxfordjournals.org/content/51/2/262.abstract
Fatigue and depression predict physician visits and work disability in women with primary Sj?gren?s syndrome: results from a cohort study
Received February 22, 2011.
Revision received May 13, 2011.[/size][/size]...........and WOW look at the year...current!!!
Valene - I remember Luna from. OLTL. My dog's name is Lieutentant McBain :)
re. depression - Yep, I have many days of feeling 'down'. Things that help: THIS GROUP, music, funny shows, stupid shows, thoughtful movies, reading (mostly on a Kindle cause' I can increase the font), walking or some kind of exercise (except during the summer when it can reach a high of 105), friends (my circle is much smaller), phone calls, family (even though most are in denial - I think I enabled that part). Making lists helps; although sometimes I do only one thing from that list whether it is cleaning out a drawer or loading the dishwasher or even actually cooking a meal for my long-suffering husband. I just used my handicap placard for the first time - at a dr appt. I also took the elevator instead of climbing 2 sm flights of stairs; a first for me. I was self-concious about using the placard, then realized that I was stressing needlessly.
Thank heavens for this group which gives me insight and perspective!
thanks p trish... love your dog's name.. so you are a fellow OLTL fan?/ so sad it ended.. and i was so hoping it was going to get picked up online & eventually cable. o well.... :(((
i get really senstiive in any sun-i was walking up my moms driveway and it was only 60 out and it already bothers me..just part of it and the doxycycline and plaquenil dont help with that.. it gets about 115 heat index in summers where i live-but not all summer long..
and hey everyone--i walked my trash down from my townhome to the dumpster-i walked the length of 14 townhomes and back.. i am pitiful.i was proud of myself.. lol ..usually i drive it down.
Hi All, while reading through this thread one thing came to mind as I got near the end. You younger ladies up to 30's, early 40's are probably dealing with mothers who are of the old school that you do "suck it up", "quit whining." "there isn't anything I can do about it" and so forth. This is how they were brought up and it's still with them. They don't know any different. I know it isn't fair, but by now they likely have to suck up their own health problems, perhaps the death of their husband, a job. etc.
Now for their mothers......who were being brought up during the depression. They were probably 3 times more stoic than your mothers. Your mothers' probably thought their Mom's were mean and cruel. We are living so much longer now and getting into a whole thing that just never used to happen. Having three or more generations living and still being active. I would be in the group of the 30-40's ladies Mom and I never had a grandmother beyond 7 years old. I never had any grandfathers. My father died when I was 15 and my mother died when I was 25 so you can just see the changes in the last 30 or 40 years. It would help everyone if they tried to imagine how things were for their mothers, grandmothers etc and this is how they were taught
Lucy
Lucy
you hit the nail onthe head ... my mom has even told me how "mean" her parents were to her.. my mom was born in 1945.. she also tells me that no one listens to her-including my dad--about her health...
but yest i went over and visited and she talked a lot about her arthritis-i listened-her one leg is so bad it hurts to walk. i told her my allergies were messing w/ my eyes-she listened but i made sure not to keep going on and on. we talked about other things too.
what i have to remember is what you said about her growing up in a different era and hvaing a mom who was 'cold' even tho i never thought of my gma that way.. and yes my mom too only had gmothers-and they both died by the time she was a teen.. It is a generation thing..and she is very old fashionded..
thanks for pointhing this out lucy... it helps to hear it from someone else..
Val :)
Valene - 3 of friends and I had a 'Wake' on the day of the last showing of OLTL. Pretty funny actually - we dressed in black, played the theme music, had a trivia quiz, ate dark chocolate, ice cream out of cartons, dark bread, black beans,etc - you get the picture :) even our husbands came. All of us have been extremely busy in our careers for the past 25 yrs (except, I have retired for a yr) but managed to keep up ith OLTL via recordings. Did you know that John McBain, Starr, Todd (the real Todd) & Blair are moving (who knows how long) to General Hospital?
I hope you and everyone are having a good day
Hey there--yes I always watched GH too-but I wish it would have been cancelled over OLTL>. i have been watching STarr and i think Blair is to be on today. :) I miss AMC too.. o well.
your party sounds fun.. My sis and mom always watched the soaps with me too--and gma when she was alive... i never saw it coming-them cancelling it...
I have been DVR'g the episodes from 5 years ago that run around midnight or so-they show 2 AMC, and 2 OLTL until soapnet goes off the air March 23rd I think. :(( I barely remember these episodes cause at the time i was still working and its when i first got sick with sjogrens.. wow...
I too have the theme song i downloaded on the net..sad.. o well.guess we have to keep going!! i sure do miss my 2 shows everyday though-they really gave me something to look forward to-and it was kind of a bonding thing with my mom..
I agree about that GH should have been canceled instead of OLTL. One of my former drama students (she played Georgie in GH until she was killed off) got me hooked on GH, but nothing like OLTL. You are right about the 2 soaps being interwined with memories of our real lives (mothers, nursing babies, sisters...just a time for relaxin')
You taught the actress who played Georgie?? i loved her... I lived in LA -the valley for over 9 years-got to visit the GH set meet Rick S. about 6 years ago.. was fun.but yes OLTL so much better. makes me sad. i guess i eventualy i will get over it!!
Yes, I taught Lindsey Letherman (Georgie) for about 2 yrs (8th and 9th grade). She frequently was gone due to her calls and jobs in L.A., but what an inspiration to our entire student body. I live 2 hrs south of L.A. She is a truly amazing person (inside and out). We were all so excited when she signed a 3 yr contract with GH. I haven't spoken to her for a few years - need to get back in touch.
How cool is that - you visited the set of GH?! Love Rick S
yeah he was nice--i had met him at a concert in Brea about a year before... it was fun.. i loved him since i was a kid--grew up watchin him at Noah Drake on GH...lol.. great memories..
are you still teaching now?
No, I had to retire early last year because of these wonderful health issues. I would still be teaching if I could - I really loved it: the kids, not the bureaucracy - even though the administration were extremely supportive :). The past two years of my teaching were done through sheer will power and too many energy drinks (I not longer touch energy drinks). Since retiring, I have co-directed and performed in one show. Now, my body is telling me to 'cool' it. I am trying to listen. You and everyone here know how strange it is to integrate the 'old' you with the 'new' you. I am grateful for my 'good' days - they are always welcome :)
Enjoy GH today! I look forward to seeing Blair. I wonder if Michael and Starr will begin a relationship? hee hee
Hey feel free to Private msg me anytime... Yes i think they are going to pair Michael and STarr... We have thunderstorms here so i will have to catch it tonight on soapnet.. :))) Blair is on today though.yeah!
I had to quit working 2 years ago due to my eyes mostly. o well..
have a great day!