Hi Everyone:

I have really missed communicating with all of you, although I've tried my best to get on at least a few times a week and keep up with everyone. You've all been in my thoughts and prayers for good days.

The last I posted, we had made a trip to VA to see our daughter and grandsons, which was pretty tough on me. Then, we went to San Diego to see our son (a trip planned a year ago). My husband tried to get me to cancel the night before we were to leave, but I said no. It turned out to be a good trip for me. Southwest Airlines has great customer service for people that need assistance. They took me from curbside in a wheelchair to the plane and let us get on first and pick out our seats. We took the wheelchair with us everywhere and I actually used it , which helped a lot. I rested every day and most importantly, had a real break from all the business of home.

When we got back home, it was time to finish all the details for our youngest daughter's wedding (Sept 12th). Even though I tried to have everything organized so that I didn't get overworked the week of the wedding, it was unavoidable. But, I made it through everything and her wedding was perfect. Her wedding was outside at a beautiful llama farm in the mountains. The owner drove me around the property in a golf cart so I didn't have to walk at all, except up the aisle at the wedding. I did lose my voice the night of the rehearsal dinner, but stayed in bed the day of the wedding until time to get ready.

I feel like I am finally learning to make room in my life for MG and accepting help and learning my limitations. Speaking of limitations, I was approved for long term disability. I had pushed my doctor to approve me working 8 hours a week at the children's museum (the place I love so much) so he gave me a letter saying I could. But....when my claims specialist called his office when I was being evaluated for the long term disability, the nurse told the claims specialist my doctor wanted to speak to her personally. The claims specialist called me and told me all this herself - she said a doctor had never called her personally before and that she had never seen a doctor show so much concern for his patients.

He (my neuro) told her that I had coerced him to approve my working 8 hours and that he is completely opposed to it - that I should not work at all. She said he talked to her for 25 minutes. The long and short of it is that they all talked together - the disability people, my neuro, and my employer - and made me resign my position and go on the long term disability.

So.....I am getting used to it now, although I have cried for about 3 weeks straight (in the midst of the beautiful wedding). I am accepting it, though, and maybe even looking a little forward to being able to enjoy life more - definitely I'll be able to be on the forum now!

Anyway, I want to thank all of you for your thoughts and prayers in my previous posts this summer as I have worked through all this, and I look forward to being more a part of the forum.

Take care everyone.

Shar

What a great post! I am happy everything is finally working out and that you are able to accept it with spirit! Isn't it strange having grown children? Just the other day I was looking around the house and said to my hubby, look we have an empty nest. {enter tears here} LOL. What a great Dr. you have to talk to the case worker like he did. Now you take the time to relax and find your limits and hey, you can always volunteer at the museum when you are having a good day {thats what I did for awhile at the schools here} You will know when you an and can't. I hope nothing but the best for you.

Sharman,

So good to hear your news! What a wonderful doc you have - most won't take 25 min with their patients...let alone 25 min on behalf of one!!

Your trips sound like they were wonderful and how great that you were not only able to take them .. but that you were able to enjoy your time at the wedding festivities and with your son in San Siego.

As JoanMarie said, looking forward to following your journey as you define your 'new normal'.

Sue

Shar,
This is wonderful news that you can take the time to get healthy and rest with your family. This disease affects each of us differently and your neuro knew that work would definitely not be right at this time. Look forward to hearing more from you. Melanie

HI Shar! What AMAZING news! I am sooooo happy for you, honey! You deserve this! Enjoy it!
It also sounds like you have a WONDERFUL neuro - something that sadly is in short supply - God it watching over you, honey!
Big hugs and prayers your way!
Love,
Erin

Sharman,
So glad to hear the good news. Take care and hope to hear good reports from you more often.
Hugs,
Simon

Hey Sharman,

So good to hear your great news! You have such a considerate Dr. too. I'm another empty nester and my son comes home for a visit this Friday! They are the best medicine aren't they?! Take care.

Hugs,
Pat

Im so sorry that you had to take disability, I know that you had been resisting it for so long. I couldn't post earlier as it brought back all the memories of when I had to give up working. Like feeling glad you don't have to go into work and feel like you are dying whilst you are there and missing the human contact. I know its hard but its for the best. At least now you can concentrate on getting yourself well and learning to pace yourself.

Im really pleased the wedding went well and that you were able to enjoy it.

I had been wondering about you as I realised you hadn't been on for a while.

Glad you are back, take care

Love
Rach

Thanks for all the responses everyone. It's so good to hear from you. I hope I can be a good friend and help to all of you, too.

Joan Marie - yes, it is definitely odd having all the children grown and on their own - we have four. I do want to be able to enjoy this time with husband and have been looking forward to it for many years. We had our first child after our second year of marriage.

Sue - it has been a wonderful time with the children, which has helped me accept the job thing. It is interesting and a little exciting to think about being able to do some things besides work and laying on the couch - like working on a scrap book for my daughter (I started it a year ago!)

Melanie - I know that I'm very lucky to have my neuro. He is so kind and dedicated to all of us, his patients. My claims specialist told me the same thing, that he knows best and I have to listen.

Erin - You are so right, I know the Lord is watching over me, sometimes in spite of myself. I'm looking forward to being able to be on the forum more.

Simon - thank you for the kind words. I will be on more now.

Pat - I hope you have a great visit with you son! You are absolutely right. My four kids, 2 grandkids and my husband are the very best medicine.

Rach - you said it so perfectly, all the different feelings. I am a huge people person and am a little nervous about how I'm going to do not working from that regard. This forum really helps make up for that loss, even if I'm not feeling well enough to post, just reading what everyone else is saying and staying connected that way. Thanks for your post.

Shar, I'm not sure I'd be happy if someone told me what to do!

It's really great that you have a neuro who is so supportive and is looking out for you. I'm sorry you have to quit working. For me, it was the hardest thing I've ever done.

If you have a hobby or other interest that you can do at home, I highly suggest you do it on a regular basis! It's not work but it will keep you feeling good and involved. I can't design much anymore but I do write and do photo projects. It gets me thinking about something other than how awful I feel and makes me feel almost human.

I hope you can adjust to not working. Expect to go through a grieving period for a while! I wish you the best.

Annie