There has to be a better way?

Thank you all for your support and advice.
Karol I do take Ulram already but I limit it to one in the morning and one at night. The gp wanted me to a low dose of preds to my resume of meds but was affraid if I did that it would not help me when I do have a bad bad flare. The time I took the 6 day pack they might as well of given me sugar pills for all it did for me. I am in the provigil and will do some research on it before asking the doctor. Thank you so much for the support and for the new med to look into.
Spell binder thanks for the encouraging words, working is all I know I have done it since I was 14 so I do not know anything else. I guess you can say that is my biggest fear that I can't work soon. I had to finally cut back my hours in september of 2008 (which I thought was going to kill me but I found a way to survive that). My boss has that surgery coming up March 31 and she will be out for at least 4 weeks and is depending on me to keep things going and in order I am just not sure my body is up for it. She has been trying me out this week on 32 hours and I think that has something to do with why I am feeling so bad now.
Pollianna Iam very much like you. I have to work because I am the sole income for me and my daughter, and as I said above it is all I have ever known. I know a lot of people say you get use to it but what if you don't than what? I can't stop working for a few reasons one of them is money we have to live and the other is it keeps me going. Work gives me a routine to follow. I just can't see myself not working and at the moment I really don't see things getting better either. I do want to thank you for the link on the medicine that is a great help.
I hope you are all feeling well and getting along fine.

I have to say that some of you made me cry from your out pouring compasion. When I came on this site it was to educate myself and help others in any way that I could even if it was just to make them smile once today. I have been finding myself relying on all of you here lately. That is not a bad thing as that is why we are all here for support from those that understand what we are going through. I don't physically feel better but emotionally I could not be better thanks to all of you. I guess my big fear is that I can't do this even with the doctors or the medicine. They want me to be the person I was 2 years ago and I can't be that person, that person was lost when I went 18 months with no medicine other than a pain pill. I have not figured out what I am going to do at this point, but I do know I can't do the 40 hours and the extra work that will come with it and the stress that will be put on me. I feel this way in part from the stress that has been put on me to be something I am not any more. I have filed for the disability social security and if it means not working any more than that is what it will have to be. My body is telling me that it is time to slow down before it gives out completely and if I don't listen to it than I have one to blame but myself. I hope that you are all doing well and feeling better.

Tammy, many hugs from me too. This must have been such a hard decision to take and especially hard to make because you were faced with this prospect of full time for several weeks. Still it often takes a full on crisis for us to face current realities we have been able to ignore. I know exactly what it feels like to be forced to bow out of important parts of one's life.
You have been feeling so unwell for ages now it does sound as if your current hours are taxing you to the limit. Like Douglas, I am constantly astonished how people manage to cope with work demands or family or both.

It must be hard on financial as well as emotional grounds. You are the only person who can judge all the elements of the situation of course, but I will just mention the possibility of taking Prednisone to tide you over. The Plaquenil can hardly have kicked in yet and maybe there will most likely be some other helpful med that will make life easier. Please don't think I am trying to persuade you to change your decision.

There are many people here who have had to make this decision and I am sure you will hear from them how they felt and how they coped. I get the impression that looking back most realise they did the right things and probably should have done it sooner than they did.

Love
Clare

Hi Tammy,

I haven't replied here before because I simply didn't really know what I could bring to you.

It is so hard when we are being pressured from all sides and when, financially, we really don't see that we have a choice in the matter.

I think you do really need to see if your doc can help you get through this particular hurdle. The thing is that there is no quick fix and we can't keep taking extra pred etc. if it is just to get through a day, or a few, or a month... At some stage we might need to reevaluate where we're going in life.

There may also be an element that your disease can be better controlled. Then again, there may be an element that you haven't been listening to your body (yep I'm amazed to at how you have kept going) and that there is such an accumulation of fatigue that it is making your disease even worse than before.

Two years ago I was in much the same situation. I had already reduced my work time down to three days a week (which was just enough to get by financially) and I was constantly being pressured to accept just one more day, one half day, one assignment... and so it went on and on.

I had told people I wasn't well, I mean hey, they kept telling me I looked awful but NO, they just didn't get it that when I said unwell, I didn't mean a cold that was going to get better and then I'd be fine.

I had just finally got a diagnosis and I had got that because my disease activity had just decided to explore a whole new universe, that of difficult to control and totally impossible to struggle through.

In the end, I just literally, simply couldn't do it. I had a three day intensive course with a student I knew well, who was thankfully very understanding and I just couldn't do it...I struggled and yawned and brain blanked my way through then called work and said "that's it I'm off!!!" My docs had been pressuring me to stop for ages and I did, I had to, there was no other option. Only then did people truly realise that I was actually ill. After all, before I had complained (or rather stated, I'm not much of a whiner :lol but had kept going and my students hadn't complained (er nope, I had been working with many for many years and they had become almost friends - also, I used to give my last ounce of me, gave my all until nothing was left).

Of course, at first, I thought that after a couple of months rest I'd be OK. I wasn't but I am a whole new kind of OK. I actually feel that I have a life now. I live rather than "survive" and I can enjoy life and my family. Before everything was based around just trying to keep going and get through another day. NO FUN at all.

I don't know, some things to mull over. You're going through a hard time with a lot of anxiety and a lot of stress but sometimes these hard times force us to think, step back and reevaluate life.

love and hugs :hug:

Katharine