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Old 07-28-2009, 09:43 AM #1
Pippi Pippi is offline
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Smile MG Hell

Hey all. Been a while since I ahve been able to post. I am about to have my 1 year anniversary since being diagnosed with MG. Still cannot climb stairs, can not get myself up off floor,have ptosis,etc. Visited my Neuro couple of weeks ago and he upped my doseage of cellcept. I have not had my thymus removed as there are no problems there. Have had ivig's and only help for short time. The summer heat has been an absolut killer on me. Cant stay out long at all.
Still struggling with social security for disability. I tried to work from Aug-Dec of last year and was only enough to earn $2,100. I made $24,000 from Jan-July. I was a self employed real estate appraiser. I cannot draw unemployment since I was self employed.Went through our savings by the end of last year when my Drs said I should file for disability. Filed Jan 12 and was denied in April. I have hired an attorney and he says I Will get it, but may not until it goes before a judge which happens if I am denied on my appeal. Our house was foreclosed on on July 20, so my wife and I had to move in with one of my sons until the diability comes through as she has always carried all our insurance and take home only covers base necessities. Could have worked out had disability been approved, but mortgage company could not work with us since it had not.
Sorry to lay my problems on all, but this site has proven to me to be a very good sounding board with many in the same boat. My wife and I stay upbeat most of the time because we DO BELIEVE God has a plan and even though we do not understand now, things will work out ok. Have not posted in a while as due to foreclosure etc did not have computer hooked up.
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Old 07-28-2009, 02:21 PM #2
Joanmarie63 Joanmarie63 is offline
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I am so sorry you are having such a hard time right now. I did not have a thynoma but I still had my thymus removed and it put me in remission for 17 years. I was bad at that time, couldn't even feed or hold my newborn son. There is hope, if you have ins. then talk to your Dr. about the thymectomy, like I said, it put me into a very long remission, drug free remission. Please keep us updated and feel free to rant anytime, we all do it because we know only we really understand what each of us is going through.
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Old 07-28-2009, 02:40 PM #3
rezmommy rezmommy is offline
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Sorry to hear that you are going through such a trying time. Better days are ahead for you I am sure.
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Old 07-28-2009, 04:48 PM #4
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Pippi,
I am also so sorry that things haven't been good for you this past year. I also do believe and am in agreement with you that God has a bigger picture than me or you and that we will overcome these obstacles in our lives. Keep the faith and know that I will be praying for you and that we will come thru this. God Bless you and your family. Keep in touch when you can and don't apologize for the ranting....as I will probably be doing the same in the near future and will need for you to hear me out also. As the previous post said, only we understand what we are going thru, so you have our understanding!
God Bless You,
Simon
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Old 07-29-2009, 12:24 AM #5
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Really sorry you are having such a tough time of it. Your faith is strong and that will help you through this. I find it extremely comforting to talk with other folks who share this MG connection and hope you will too.

Sue
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Old 07-29-2009, 01:33 AM #6
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Hi Pippi, am sorry to hear of all that has happened! It must be tough dealing with all of these, on top of what's happening with MG. I do also believe that God has a bigger bigger picture for all of us, and know that once revealed, you'll be swept of your feet and be so amazed at His love. Please feel free to rant here, we're all here for one another and we're with you all the way! Will be keeping you and your family in prayer, am sure that everything will work out fine for you!!!
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Old 07-29-2009, 03:42 AM #7
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Sorry to hear you are having a hard time at the moment.
You are right this is a great place to bring your problems to share and get support.
look forward to seeing more of you
Kate
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Old 07-29-2009, 04:38 AM #8
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Pippi,
So sorry, you have been going through all this, illness effects our lives in so many ways, very sad. I hope your SS goes through soon for you.
Take care
Mary
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Old 07-29-2009, 08:13 AM #9
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Hi Pippi,

I am so sorry to hear all you have been through latley. I am sure your faith has been a great comfort to you. I will keep you and your family in my thoughts & prayers. I hope you start feeling better soon. Take care.

Hugs
Pat
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Old 07-29-2009, 08:23 PM #10
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Thumbs up Hi Pippi!

Pippi, I am so sorry to hear you are having to go through all of this. It isn;t right or fair, but your outlook on life is truly AMAZING! I too am a HUGE believer in prayer and believe that some (or maybe all) of us WILL GO INTO REMISSION!

Just the fact that you took the TIME to let us all know that you are OK while going through all of this is amazing!

Hang in there! THe dirst few yeare are always the hardest - so I've heard - I'm ! 1.4 now and KNOW it will get better! Once your meds are adjusted you will feel like a new person!

It does get better!
Big hugs!
Erin



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