Hello again! I'm sorry you aren't feeling well - this darn disease just won't seem to give you a break, will it? Is your mom taking care of you? Do you have someone to help you out? Gosh I wish we all lived closer to each other - that way we could do something to help each other out.......Staying in bed is frustrating, I know buy you need to make sure and try to take really good care of yourself and try to just relax - easier said than done I know. I personally hate it when I'm down, bu have recently taken up sewing (when my vision/fingers allow) - not exactly exciting, but at least my WHOLE family now has tons of pillows.................How long were you well after your thymectomy? Days? Months? Years? I don't want to get get my hopes up too high, but on the other hand the thought of being sick for the rest of my life is just too much for me to handle right now. If I have to go in every month for IV IG or whatever in order to do so, then I will, but the thought of not being able to properly take care of my fellas is just too much for me. I'm still new to this (it's really only been 5 months since my diagnosis and surgery), so maybe I'm still in denial, but I grew up taking care of my chroncally ill Grandmother and saw how much she suffered (she finally had a heart transplant in 87, but passed in 92)......I saw her take pill after pill and bedridden for years and I truly don't know how she did it.She was an amazing woman. Her strength and dignity were truly amazing. She never complained - even when she was bleeding out of her eyes.........it was horrible. I started taking care of her after my dad refused (I was 13 @ the time) and it was really hard. We had to wear masks and sanitize everything we touched. I for one will conitnue to hope and pray for remission until my last day on earth. You WERE NOT complaining, just explaining what you are going through right now and I always like to hear from you........I hope you feel better really soon! Know that I am praying for you..............Erin

Hi Erin,
thanks!! Mum lives about a 3 minute drive away, so she's there if I need her, her twin lives 3 doors down from me, so she will be right here if I need her. At the moment I'm coping on my own, resting not eating much, so I don't really need thier help.

I guess after my thymectomy in '03 I did really well for a while, it took months I think,worked part time. Now I don't feel I'm doing as well, or I wonder if I wasn't doing great back then but had not choice to soldier on and struggle with life. Before the thym' I had not strength or energy, I would come home from work, and have a glass of milk for dinner. At least now except on my worst days I can cook dinner. The housework sometimes gets left for a while, but on the whole I'm better than when I was first diagnosed, just not back to my old self!!
I often think I'm still in denile, I sometimes push myself way to far, when I should be resting or at least taking it easier.
Wow, that must have been a hard thing taking care of your Grandmother from such a young age!
I bought myself a sewing machine last year, and have made a few things, and hopefully will continue to do so. I really do enjoy sewing, a bug I caught off my Mum.
Hope things continue to improve
redtail

It is so great that your mom is so close - I know my mom has been just great! She drives me and my hubby crazy, but it has been wonderful having her here - in fact we are thinking about having her move in here with us and staying upstairs so she has privacy......She had been staying with my little sis, but that doesn't seem to be working out right now.

Yeah, it was kind of hard taking care of my Grandmother, but it had to be done, and I loved her so much that it really wasn't that much work. After her heart transplant she needed full time help and I'm glad I was able to help. My dad fell in love with this awful woman and after that stoppped helping my Gram out. In fact, I though about staying with her full time, but she did finally get a live in nurse, and was really independant - she was truly the best and I miss her so much. Se passed when my son was 2, so he doesn't really remember her, but I tell him stories about her all the time.

I think my Cellcept has kicked in finally! My hubby and sis have both said that I seem to have much more energy - only time will tell!

Have you put on a lot of weight since your surgery? I used to be a size 2/4, now I'm up to a 8/10 - it's driving me crazy! I know most of it is the steroids, and am thankful that I can now swallow, eat and all of that, but it's just weird looking like this - I was only 5 lbs. heavier when I went in to have my son! Do you have strange cravings now that you are on all the meds? I was talking to this wonderful woman at my Cancer Care clinic, and she has all the same cravings as I do - especailly when she was going thorugh chemo.....she was such a sweet lady! She was so brave, too! I have met the most amazing people since I've been sick. They are so strong and brave that it makes me feel like such a big baby.............

How are you doing today? Are you feeling better? I feel a little under the weather today - sore throat and all of that......I plan on staying on the sofa/in bed all day. My son went camping with his best friend last night and should be home soon.

Take care!
Erin

Hi Erin,

Sorry to hear you're not too well.
I'm feeling better than I was not feeling sick, my mg is still bad, and I am totally exhausted today. Yesterday was Fathers day here, so I had Mum and Dad over for lunch. I cooked roast chicken and vegies, and apple pie(home cooked of course!!) I over did it I know, but it was worth it, they both enjoyed it, and my big sister called in, in the afternoon. It was a great day.

I only started putting on weight over the last 14 months or so, after a minor crisis, my pred was bumped up to 40mg daily, then I started eating like there was no tomorrow. I'm now trying to re educate my body to convice it I don't need all the food it thinks it wants.
Hope you are feeling better today.
take care
redtail

[Hello again! Things have been better here - I stayed home today to just rest - it was WONDERFUL! I have been going to work recently - that has totally been a blessing , but has knocked me on my butt though I truly missed having people around - being housebound just isn't for me........Wow you made a really nice dinner for your dad - did that knock you out? Do you notice your energy going wayyyyyyy up and then wayyyyyyyyyyy down very quickly? I ebb/flow throughout the day - all day long.

MY weight is still an issue for me. I used to stay around 120-125, now I'm up to 140. It doesn't sound like that much, but on my frame it makes a HUGE difference. Regardless, I'm just thankful to be able to eat again, so I guess I should stop whining.......Take care and let me know how you are when you get chance....

Erin [/COLOR]

Hi Erin,

Yep cooking it all took it out of me, but was sooo worth it.
Yes I do ebb and flow thru out the day, at the moment mornings are bad until I take my first mestinon, and after lunch I now feel very tired, and even end up in bed, which is most unusual for me. A few months ago I ended up in hospital with a sinus infection, and havn't felt 100% since then, befor then I was walking most days, and felt quite good, the nature of the disease I guess.
Glad you had a nice rest, hope everything is ok with you
redtail

Hey there! I was @ the office again today - got a lot done!I love days like 2day! I even went with my sis to pick up my niece @ her school - she's 6 and thinks I"m really cool and brought her a few "goodies" to show off. She is so funny! She tells all of her classmates about my disease and how many meds I take like it's really cool. I can't wait to go and have lunch with her; I was just worried that she'd be embarrassed if I showed up @ her school with my HUGE face - no worries though. She was so proud I was there!

We are gearing up for Hurricane Ike this weekend. I sure hope my house doesn't take too much of a beating.I'm going to gas up my car and get lots of food for this weekend..........They are predicting a whopper of a storm!

Hey there! I was @ the office again today - got a lot done!I love days like 2day! I even went with my sis to pick up my niece @ her school - she's 6 and thinks I"m really cool and brought her a few "goodies" to show off. She is so funny! She tells all of her classmates about my disease and how many meds I take like it's really cool. I can't wait to go and have lunch with her; I was just worried that she'd be embarrassed if I showed up @ her school with my HUGE face - no worries though. She was so proud I was there!

We are gearing up for Hurricane Ike this weekend. I sure hope my house doesn't take too much of a beating.I'm going to gas up my car and get lots of food for this weekend..........They are predicting a whopper of a storm!

I guess we all ebb and flow througout the day. I was getting worried about it....of course I worry about everything ALL THE TIME NOW - I'm going to ask my doc to up my dosage of antidepressants......Every time I sneeze, I want to call my doc but am worried he'll think I'm wacko! I just don't want to end up in the hospital again - that is a horrible place, no sleep, nurses and drs. coming in all the time.........YUCK!

Hope you are feeling better today!

Take Care,
Erin

be safe erin.

i'm north of you, in the dfw area. we are expecting the outer bands on saturday.

THank you! You too! We all need to "hunker down"............

Erin