[erinhermes]

Hello all! This record breaking heat and STRESS have really gotten a hold of me. I'm taking 6-8 Mestinon a day, plus 1000 mgs of cellcept and 40 mgs of Pred and cannot get off the sofa! Plus, my left eye is going wonky again! WTH?

I'm going to call my neuro 2morrow and ask about going to 60/40 pred, and see what he says....I just hope he AGREES and doesn't put me back in the hospital....hate being there all the time! I DO love the nurses, but when I was there last Tuesday everyone was coming in and saying hi - another couple that was in there told me I must be there all the time - well DUH!

This economy and the thought of my little girl leaving has me crying every night, not to mention that I am now having 2 periods a month - as if one isn't enough. I SWEAR every time my PICC or jug cath is pulled I have another period, no matter when I had one b/4. Does anyone else have this problem?

Hopefully this post finds EVERYONE strong and HAPPY!

Big hugs!
Erin

[SharS]

I'm so sorry it's so difficult right now! Being upset is one of the quickest ways for me to get worse. My husband rarely gets affected by stress like I do and I've figured out it's because he knows how to compartmentalize things and not let one thing bleed over into everything else. Plus, he really takes to heart that there is no use worrying or staying upset over something you can't control - he says it's because of faith in God, which I know is true but I also think it's his personality, too . Obviously, from my latest post, "Up Late Worrying", I haven't fully mastered his techniques! But, I do know he's right and I've been able to do some better at keeping things in boxes and not letting them impact every part of me.

By the way, I noticed you said you're on 1000mg of CellCept. I take double that dose, 2000mg (1000morning, 1000night). Do you think an increase in your dose might be a help to you? Of course, I know it takes several months to notice a difference.

Try to think about things that make you happy. I'm praying for you.

[redtail]

Oh Erin,

wish I could send you some of this nice cool weather we are having here, just had a hail shower.

2 periods a month, I recon 1 a month is waaaay to much, which reminds me why I'm feeling so atrocious at the moment!!!!!!! Grrrrrr I hate periods and how they totally drain me and make my MG worse.

I really do feel for you at the moment, wish I could do something
take care
Kate

[Pat 110]

Hey Erin,

I am so sorry you are having to go through all this. Hope your neuro comes up with something to help you feel stonger. I know this is a very difficult time for you, but please try not to get too stressed out...it makes our symptoms so much worse. Try putting a cool cloth on yours eyes often and see if it helps. As for the periods, I haven't had one in many years and I've been post menopausal for years now too, but I still remember them well. Have you mentioned to your doctor you are getting two? Try to relax and stay cool. You are always in my thoughts & prayers. Take care.

Big Hugs,
Pat

[Joanmarie63]

ERIN I hate that you are going through all this. As for the period problem, I had my Dr give me a partial hysterectomy, no uterus, no period I hope you start feeling better soon, as for the heat, come visit me in western NC we are breaking record low temps this year, don't know what is going on with the weather but I am greatful for it.

[rach73]

Hey Im thinking of you xxxx

Did you speak to the dr about going on a progesterone only pill (mini pill) so that it stops your periods? I know prenisolone can mess your periods up, with mine they just stopped.

I hope you are feeling better soon. Im having a better day, but have done absolutely nothing!

Lots of love
Rach

[erinhermes]

Hey sweetie!

I start my 60 mgs of pred, so we'll see how that goes! I hate the fact that it makes me so shaky, but NEED the boost right now!

I'm going to call my pastor and see if he will stop by tomorrow for some prayer.......only He will help me through this!

I NEED a hysterectomy, I'm just afraid of MORE surgery! Isn't that silly?

You'd think after the thymectomy any other surgery would be a piece of cake, but I am so tired of being in the hosp all the time!

How are YOU feeling?

Big hugs!
Erin

Originally Posted by Joanmarie63

ERIN I hate that you are going through all this. As for the period problem, I had my Dr give me a partial hysterectomy, no uterus, no period I hope you start feeling better soon, as for the heat, come visit me in western NC we are breaking record low temps this year, don't know what is going on with the weather but I am greatful for it.

[erinhermes]

Hey hon! It will get better - I know it will! Just got off the phone with Dr. I and he agreed to let me go to 60/40, so we'll see how that goes!

I REALLY am trying to let go of the stress. It just hurts so much to have to let Lilli go! On the positive side, I can flly up to Buffalo and drive the last 60 or so miles to Allegheny......it will be soooo nice to actually be in nice, cool weather for a change!

That cool cloth sounds like a GREAT idea! I'm going to do it tonight if my eyes start to go "wonky" again!

Thank you for the prayers! I am a HUGE believer in PRAYER!

How are YOU? Are YOU feeling better?

Big hugs!
Erin

Originally Posted by Pat 110

Hey Erin,

I am so sorry you are having to go through all this. Hope your neuro comes up with something to help you feel stonger. I know this is a very difficult time for you, but please try not to get too stressed out...it makes our symptoms so much worse. Try putting a cool cloth on yours eyes often and see if it helps. As for the periods, I haven't had one in many years and I've been post menopausal for years now too, but I still remember them well. Have you mentioned to your doctor you are getting two? Try to relax and stay cool. You are always in my thoughts & prayers. Take care.

Big Hugs,
Pat

[erinhermes]

Hi Kate! I would give almost anything to get away from this HEAT! 100+ degrees every single day! I'm stuck inside, except for my dr's visits.......Going tomorrow to have more blood work done - since I'm on Cellcept again, my neuro is making me go every week for the next 8 weeks.

I talked to Dr. I and he agreed to let me go to 60/40 pred every other day.....tomorrow I start the 60! I was JUST starting to lose weight and was down to only 2 chins, but I really think I NEED the boost right now!

Do you CRAVE sweets since you started on the pred? I used to like them, but now I LOVE them! Still, I have to lose those pesky 40 lbs!

Having 2 periods monthly really stinks! I know it has something to do with my IV IG or the other. There is just no other explaination for it!

I tell you one thing, if I win the lottery, I am heading for Australia! I've always wanted to go anyway........

Hope this finds you stronger and HAPPY!

Big hugs!
Erin

Originally Posted by redtail

Oh Erin,

wish I could send you some of this nice cool weather we are having here, just had a hail shower.

2 periods a month, I recon 1 a month is waaaay to much, which reminds me why I'm feeling so atrocious at the moment!!!!!!! Grrrrrr I hate periods and how they totally drain me and make my MG worse.

I really do feel for you at the moment, wish I could do something
take care
Kate

[erinhermes]

Hey hon! THanks so much for the kind words! I know I NEED to get over it, but the thought of Lilli leaving is really hurting me. I've been with her EVERY day since she was born. She is just my little princess!

I need to learn how to relax and just leave things in His hands. He is the ONLY one in control. I need to learn how to submit to His will.....and I am going to!

Are YOU doing better?

Big hugs!
Erin

Originally Posted by SharS

I'm so sorry it's so difficult right now! Being upset is one of the quickest ways for me to get worse. My husband rarely gets affected by stress like I do and I've figured out it's because he knows how to compartmentalize things and not let one thing bleed over into everything else. Plus, he really takes to heart that there is no use worrying or staying upset over something you can't control - he says it's because of faith in God, which I know is true but I also think it's his personality, too . Obviously, from my latest post, "Up Late Worrying", I haven't fully mastered his techniques! But, I do know he's right and I've been able to do some better at keeping things in boxes and not letting them impact every part of me.

By the way, I noticed you said you're on 1000mg of CellCept. I take double that dose, 2000mg (1000morning, 1000night). Do you think an increase in your dose might be a help to you? Of course, I know it takes several months to notice a difference.

Try to think about things that make you happy. I'm praying for you.