I have noticed the same thing! Some mornings I wake up almost "manic" with tons of energy - feel on top of the world and that quickly turns to feeling awful and then a MASSIVE panic attack! I can feel them coming on - face gets hot, start to have problems breathing, etc that nothing but 2 xanax can help.........I am trying to not be a pill popper, but I just need to take them when I get to feeling so awful!

I also had a problem being stuck outside, and after that literally did not leave my house for a few months - except for my drs. appts., but decided that it was no way to live

Yeah, being our age and feeling double that can really take its toll........but we have a good support system and each other, so lets hang on!

I'm going to have lunch with my niece today -wish me luck!

Take care,
Erin

Hmm yeah - the need of help is really hard to cope with, I think. Today I had to take my kid to school (usually his dad do this), pick him up, go to the hospital (eye check because of Sjögrens and some medicin, that can affect the eyes) and then take my son to sport. It was just too much - luckily my mum came and picked us up with her car. She bought stuff for dinner, cooked etc. while I just collapsed. When she woke me up everything was ready on the table.

I can't go shopping clothes on my own anymore - because of my lupus I can't be outside, so no window looking for me. I can only go to malls, but the nearest one is 20-30 min. away (walk, train, walk), and when I get there, I'm to exhausted to walk anymore, and I just don't know how to get home. So even though I'm 33, my mum has to take me. Ofc. it's nice that you have parents willing to help you out, but it's also frustrating, when you have a family of your own, and feel that you should be the one helping your not-so-young-anymore mum.

I just wish I could go back to my old self: Go to the beach in the summer time, run if I want to, walk a long walk in the forest, clean the apartment when I feel it needs to, instead of doing a tiny bit when I'm able - just being my old independent self again. But it's no use dreaming I guess. What do you all do to not let thoughts like this depress you?

There is no way to stop those feelings; they are perfectly normal - you are perfectly normal! We have a disease with no cause and no cure. In addition to that, you also have the added stress of having other autoimmune problems that are terrible. Kick! Scream! Cry! Let it all out! We are all here for you..........I get down, too, though I am on Paxil (an antidepressant)and maybe it's helping and maybe it's not, but for what it's worth you ARE NOT ALONE! I know it feels that way for me too, but stress can ony make us worse. Easy for me to say, right? I stress all the time too. I mourn my former life. I cry for it. I pray for it daily - all of it......the good/bad and in-between, but MAYBE, MAYBE we will go into remission......that's the one thing that keeps me hanging on.

Hang in there and please let me know if there is anything I can do to help!
I hope tomorrow is better than today!
Erin

I use to have a dog,(I'm not married and do not have children) and he kept me on the straight and level, when I couldn't take him out for a walk, he would just look up at me and smile, and seem to say "Hey I don't mind spending a day in bed!!!!" Now he's gone I'm teaching myself that its ok to have days where I cant do anything besides get up, eat and rest. Its very hard and I still have days of rage and fury where I cry, sob and generally feel totally annoyed with life, then generally the next day I feel a little better. Its a hard thing, but I'm soooo very glad I can come here and speak and listen to you wonderful people, get and give support, I really don't know what I would do without you all.
so thanks!!!!
redtail

This may sound totally dumb, but have you thought about getting another dog? I know it's soon, but they bring such joy to our lives.........maybe a shelter has an older dog that is housebroken? You know you have all of us to talk to whenever you feel down! I for one, love hearing from you - it always brightens my day! I know its hard, but feel free to email me 24/7! It sux that we have says like that, but try not to beat yourself up over it! You are incredibly strong and brave - don't forget that! Our disease is just soooooo awful and it robs us of so much, but (hopefully) it can somewhat be controlled! I want you to know I missed you while i wa gone and cant wait to talk to you! Take care! Erin

Hi Erin,

thanks for all your kind words!!
I would love to get another dog(a whippet!!) but am unable to have one where I live at the moment! such is life, I go out to my sister and brother in laws place they have a Kelpie, who looks after me, and a ridgeback who is only 2 and still a complete hmmmm whats the right word?? anyways they both have lots of love to share with me.

I had to go up to Perth to see my neuro, a 2 1/2 hour trip by car, my darling big sister took time off work to take me. I'm on cellcept and can only get it through him at the hospital, still at least I can get it, and at a tiny cost, for this I am most grateful.
He suggested a day course of IVIG, and then explained that having it more often than about once or twice a year is difficult as its VERY hard to get and very expensive, but it did sound like he would like me to have it a bit more often. So I may have to get every one I know to start giving blood. Over here its all by donation.

So how are you doing Erin, have you been back to work??
hope all is going well
take care
redtail

Whippets are great dogs! They are little balls of fire! I know my poms and chihuahua have definitely made my life a lot better! My little 4 lb chihuahua is so protective! He cracks me up cuz' he attacks everyone that tries to get near me (on my really bad days)..........fortunately, the hospital has told me that if I stay in a suite for my next IV IG, I can have my little babies up there with me (one @ a time).......I know for me that would make me feel a lot better! My dogs bark all the time and generally drive me crazy, but I can't imagine life without them! They were so cute last night! All of them just stayed up with me and stared @ me all night - they do not like it when I'm away!

Cellcept is super expensive here! If I didn't have ins., it wuld run me $500+ a bottle for 60 pills.......it has been great though! I was really worried initially regarding Cellcept, but told my doc I'd be willing to do anything for a better chance @ remission. You said earlier that you had a lump in your leg removed due to the cellcept - was it a big one? How did you even know you had it? Did it hurt? Do you think I should be on the lookout for lumps? The thought of more surgery just terrifies me! I know I should have a hysterectomy, but there is no way that I want to even THINK about surgery so soon after my thymectomy...Does your spot still hurt where they cut you for the thymectomy? Mine still does! Of course, my iron level is still iffy, and my docs seems to think that it is why I'm so slow to heal.............Got to get ready for my docs. appt - more blood work - yuck!

I'm staying home today - no work for me! I was totally wiped when I got home from Dallas! My head would not stop hurting - and I took 2 pain pills - it kimd of freaked me out! Guess I shouldn't have offered to drive for Mike - 5 hours, not fun!

Talk to you soon!
Erin

Just curious, why do you think you should have a hysterectomy?

I have terrible endo - every month, I pass out, throw up,go into shock, etc, due to the pain. It gets so bad that when I had my son, it was a total cake walk by comparison......My OB/GYN found lots of scar tissue on my left ovary, but ruled out surgery to remove it due to the huge amt. - said it would prolly grow back worse and that a hysterectomy was really my only choice for being pain free - no way am I going under the knife again. I can live with it!

For your information, the full price in France for a box of 50 CellCept (500 mg) is…209 US$, about half the US price! Where does the difference go?
On the same subject, 8,50 US$ for a box of 20 Mestinon (60 mg, Valeant brand), again full price!
Maurice.