"Seriously?"

[Patze]

Hi Sleepy,

Wow, how lucky you are with your current rheumy!  I'm so jealous!!!  That must have been one of the best days of your life, wow, the guy wasn't looking for the quick and easy, and that's impressive!  I've seen too many stories where members have had to wait like you, for years before a doctor finally figured it out, and that is so unsat.

I'm glad that you've had a change to look around the board, it's a great place to be!

Again, welcome to the board!


Patze

[trector1955]

Hello,
     I too get so tired, but I can't get to bed until late. I can't stand to lay there and not be able to sleep. Than I take something more to help me sleep and than I can't get out of bed until 10 or 11 the next day. than I get so tired I take several naps. I am so tired of laying down. My days and nights are so messed up. I want to go back on Lunesa, But it costs $100.00 co payment. I have to wait. There is other meds. I need right now. They cost too.
     Watch what you wish for. It will come back to bite you in the butt. When I worked about 7 years ago. I was so tired all the time. so I wished I didn't have to work. I wasn't dxy with Sjogrens, than I had Fibermyalgia.  Well this lady at the bank asked me where I worked and she said oh wow I wish I didn't work. Well I will trade places any time. I have such a hard time staying home. I am so tired all the time . can't get much house work done. You would think my house would be spotless. Right. I have no interest because I am so tired.
     I had never even heard of Sjogrens before. I went to my GP and he sent me to get blood work done. he thought I had Lupus instread of Frbermyalgia. Than I was sent to a Rumhey and he dyx me with Sjogrens. I didn't know what it was, and had to ask the nurse for information on this. now I go back and see him every 3 months. I also just got my upper tear ducks plugged with the smart plugs. I am so quiet when I am with the Dr. never ask too  many questions. He only wanted to plug the right eye the plug had come out. Well I did talk him into plugging both eyes. I guess I will have them cauterised soon. When I had the other plugs I had too many tears. now with the smart plugs I still don't have enough tears. but it is so much better.
     I just also found out that I get to go to the beach for a week with my hubby. I have not had a real vacation for a long time. I am so excited.I will just had to put on my hat and sunglasses etc. I use to live out side. But now it does a job on me.
I can't even weed. I have planted flowers for ever in the spring well there are no flowers this year. and I have even given away.most of my house plants. and I am only 54. But I am so excited about going to the beach even if I spent all the time in the suite. I can see the ocean. and we will be on the 15th floor. and Its free.
     Well better go for now. I need to lay down, I am not thinking about the things I can't do only the things I can do. I am going to think positive.  I want to have a good time for a change.
Theresa

[Jules48cats]

Hi Teresa,
Wow reading your post, really hit home with me.  I lost my Job this January because I was having trouble keeping up at work and of course so many doctors and appointments.   Now I have applied for SS. Still waiting to hear.  I have RA since 1987, and it started to get severe in 1999.  I have been on a lot of different medications for it. I had a lot of trouble in 05-06 when I was given Arava.  I slept for 18 hours a day sometimes.  I had been laid off at the time.  I never got much better after that.  They did a lumbar puncture after my MRI came back with plaque on the brain, and that was when I was diagnosed with sojrens. It has been downhill since then. 
I am now on Orencia for my RA and that has helped but all the eye and dental problems are horrible.  I did have my upper lids cauterized and that has helped. I did have the plugs but they kept falling out.  I don't even have enough moisture to let me have a good cry. 
I have to see an oral Surgeon on Monday because I have an infected root canal, and I might have to have the tooth pulled, which really depresses me even more.
But I still miss working.  I can't keep up with the house work either and do take lots of naps. 
Finding this website has made me feel much more human.  Most people don't understand what a person goes through with this disease.  It does help to share and vent. 
Have fun at the beach,  I guess you are like me with some of the med's , you can't be out in the sun. The sea air will be good for you. 
The last vacation we took was two years ago,  we went to Salem  MA for our honeymoon.   It was great except I had trouble walking and was soooo tired.
Well thanks for listening and take care. 

[irish]

I have had fatigue since I was 20 years old and now know that I had sjogrens and myasthenia gravis way back then but it was not as bad and it went into remission many times. I worked as a nurse doing hard work and had a huge garden and did a lot of other stuff. All the time I was tired and I always had to lie down and take a short nap on my days off plus would have to lie down and rest after work before I made supper. Many times I would miss that nap and I felt like I would fall down or faint I was feeling so yukky.

As the years went by I tried hard to get a doc to diagnose me buy I guess all the docs had me convinced that I was "depressed"----and I was cause I was sick. I had to work like most of us do. I changed nursing jobs in 1998 to one that was easier or so I thought. I ended up having so many illnesses and surgeries while employed at this job and they were so good about it. I was the RN for an assisted living and could set my hours. This was nice as I was not sleeping well--probably 3-5 hours of sleep a night and it took me 3-4 hours to get ready for work. I would have to keep sitting down to rest. I thought I was just tired because I wasn't sleeping. Low and behold I really was sick.

I finally told my hubby in early June of 2003 that I had to quit work cause I just couldn't do it anymore. I had to walk miles at work and it was just killing me. Plus I was on call 24/7 for much of that 5 years and would have to go in if staff needed me and often got 3 phone calls a night from staff. My plan was to rest up during the summer and get a doctor who would find out what was wrong with me and then go back to work somewhere in the fall. Little did I know!!!!

Finally got diagnosed in Sept 2003. I keep my nursing license and insurance up and still hope to be able to do a little something someday. However, that day doesn't seem to be coming. I can't walk much and the sweating from the autonomic neuropathy is horrible plus all these darn infections. I talked to my immunologist about working and he told me there are a lot of sick people in nursing homes and hospitals. Yeah, doc I get it---don't want to but I get it!!!

We all do what we have to do to survive. By the time I quit work I was coming home and lying down for a 1/12-2 hour nap before I even ate supper. Soooo, yes, it is the pits trying to work when one is ill. Irish

[lesleyjoy]

Hi part time work is the way to go, if you can get it...I'm divorced and by myself so I rely on it for my income...a bit easier if you've got a working partner!

Cheers, Lesley (NZ)

[sleepy]

The area where I live offers little for PT or job sharing, I have been looking for 1 year. 

Thanks to all for their input, I learn so much from the discussions.

[Katybarstool]

Currently I work full time. I'm 52 so have almost 13 years to go before I retire. That is the theory anyway . My work is office based mostly, and it is for a health charity, who are real equal ops employers. I've been there for 16 years and never had much time of sick until 4 years ago when I had 3 gyny surgeries, and then this year when I've had 2 surgeries and another spell in hospital.

Over the past couple of years working has become much harder. I've had bad spells in the past when my life has consisted of working and sleeping straight after supper, and having afternoon naps at the weekend. Luckily my hubby is pretty understanding. Now I find that I pace myself better - out of necessity. I know that if I overdo it one day, I could be flat on my back for the next two or three days. In the past I have not worried about driving for three or four hours at a stretch, now I'm worried even about driving 30 miles. When I was recovering from my surgery recently, a colleague asked if I could get away for a few days. My sister lives in Cornwall, and I could have cauaght a flight locally, but I knew I just didn't have the energy to organise it, and carry luggage. This didn't upset me. I think I'm becoming more philosophical now, and am grateful for the times I can go away with my hubby, and often our middle son.

Anyway, this is getting pretty long, but I just wanted to say that   although I do work full time, there are lots of things I can't do, but I am the main earner, so will do it for as long as I physically can, and hope for a lottery win in the meantime.

[trector1955]

Hello,
     KathyBarStools!! I hope I win the lottery also, I am tired of being broke. But we make it. This vacation I am going on to Mertle Beach S.C. is a timeshare from my Mom. I could never afford this. Wow a week at the beach. I can't wait. I don't care how tired I get I am not going to sleep away my vacation. and do I get tired sometimes I am so tired right now, But its Fathers Day. It is 6:00 and I am still in my nightgrown!!! I just cooked us some hamburgers and boy were they good. Hamburgers and potato chips. thats the way to go, nice and easy.  I just had to tell you guys what a dumb thing I did last night. I went to the water park with 2 daughters and their small children Taylor 1 and Ryan 5. We had a blast. They talked me into going down one of the water slides. The curvy one. Well I did it and I got stuck at the top of it. Its open on the top. so naturally everyone saw me. I thought I was really going to either drown or have a heart attack. I had to use my arms Butt and legs to try to make it down the water pressure would not push me. I guess I didn't push off fast enough. it seemed like it was 10 miles long. I AL most gave up. It was like I can't do this any more tired. I just knew some one was going to come down and hit me in the back I know everyone on the top must have been thinking that crazy lady. I wish she would hurry up. The attendee kept saying Mame lay flat and the water will push you down yes it pushed me to almost drown. Talk about embarrassing. When I finally did get to the bottom I was so tired. Never again for me I am not heavy and am only 54.  Wow I will never live that one down.!!!maybe thats one reason I am so tired today ya think!!!!!
Theresa
Happy Fathers Day to all the fathers out there esp. the ones that can't be with their children.

[Katybarstool]

Teresa

That sounds funny now, but I bet you were mortified at the time. Burgers and chips sound good to me.

Kathyx

[dkpowell]

the plaquinil will help with the fatigue, but it takes some time. Hang in there. I work full time, and Like many of the others, I feel as if I only have energy for work - none for life! I try to keep up with my water therapy - hot pool exercise - I also have fibro. it helps with the pain, and keeps me more limber. I ahve my grandchildren come over once a week and pay them to do house work for me. My boss is an ophthalmologist, and he diagnosed my Sjs before my rheum did - albeit only hours before...I was headed for an app't with her, and had him check my eyes for me. Anyway, he is very understanding and helpful. My job is low stress - due to him...I do insurance coding for a surgery clininc! LOL. He gives me anything I need to keep me going. My husband does most of the cooking, and a lot of laundry and etc. We need the second income to make it. I lov emy job, but there are many days that by the time I am dressed, I want to go back to bed!! I don't get the choice, so I go on to work. I have to be in bed by 8:30 or so, and I get up at 7:00 am. But, I can cope with it if I do everything I know I should, rest, good diet, exercise at elks rehab - etc.
I read everyone's comments and feel as if they are describing my life. sometimes I feel like I am the only one in the world that feels like this, and wonder why I am not like all my friends my own age. They still have sooo much energy compared to me. I don't wish it on anyone, but it is some comfort to know that there are others that feel the same way.

[jordozmom]

OMG!  You guys, I am literally reading this and crying.  I am SO glad it is not just me.  I was diagnosed with SJS around 10 years ago and though I've managed to still work full time, I'm finding that this most recent flare seems to be hanging on and I'm not sure that continuing to work full time is going to be an option for me.  I literally struggle every single day to get out of bed and make it to work - sometimes I even get tired of having to think about it every morning.  Today, for instance, I literally rolled out of bed, threw on clothes, brushed my teeth and hair and walked out the door.  No shower, no make up - nothing. My friend/co-worker was grossed out, but I said, "Hey, that is what it took to get my son to camp and to get here today, so that's what I did.  AND I made it the whole entire day!"  But admittedly I wasn't very productive and I hardly got a thing done.  Now I'm already worried about getting to work tomorrow.  Not only is it frustrating - fighting to make it in every day and then the possibility that I won't be able to work full time - but it literally has my emotions in chaos constantly.  I think I need to just come to grips with the fact that this is my life now and let it go.  I think I will be better off in the long run, but it is just hard to let it go.  I've always worked full time and had my own insurance, and it will be so different to depend so fully on someone else as the breadwinner.  DARN THIS DISEASE!

[sleepy]

Hey, I just have to say, "God bless us all" At least we have each other, for which I feel truly blessed.