Wow! You have a great memory, Kitty! Yes, I was blessed with a second granddaughter in June, Sydnee Mae is now 7 months and a bundle of love. It melts my heart when she smiles! And kudos to you for starting this post and your great memory! Love reading everyones!!!
I haven't been able to walk far outside for years because the nerves are crushed in my left foot. HOWEVER, I have, for years, used the Leslie Sansone Walk DVD's. Mine are so old now my DVD player wouldn't know what to do if I put a different DVD on it. They have a lot of variety and you can do them more gentle or use weights if you're strong enough. I've been stronger at some times than others. When it's 0 outside I can't go out because of lung issues I dealt with 3yrs ago with double bacterial pneumonia. Bottom line there is always some way around. Once you gently exercise, then get stronger, the pain gets so much better you'll never want to go back.
I’m very much in love with my boyfriend. We’ve been together since 2008. He and I take care of each other. There is more give on his part I’m afraid. We are like a bunch of school kids. I’ve never been in love before-maybe lust!!! That would have been my first marriage. I’m or we’re not marrying, but we sure are happy and very protective of each other. Mushy, mushy, mushy.
Ah, that's lovely......so pleased you've got someone who loves you, helps you and protects you.
My Husband is like that and we've been married for 28 years! and known each other for 30 years.
Long may it last....we need it.
Love Lucy xx
We all need a little mush in our lives :)
Thanks (blushing)
I do too. Thanks. Had a scare yesterday. He’s wearing a heart monitor for a month now. Was supposed to do a stress test yesterday, but doctor wouldn’t allow it. He’s had 4 heart attracts. I’m concerned. We had a prayer. It’s genetic for him. Thanks. My parents have neen married 57 years. Wow. Glad you are so happy. It helps.
I'm so sorry--some of your replies make me feel I had been boasting about all I am able to do. I know--both thankfully and guiltily--that I have it far easier than many with fibro. But let me just say, that this is one thing my rheumatologist and my acupuncturist agree on: physical activity is more powerful than any drug. If all you can do is walk around the room, then that's good exercise for you. If all you can do is sit up and brush your hair, maybe that's good exercise for you. The actual amount doesn't matter as much as needing to get some kind of motion going on.
Love to all my suffering sisters (and brothers!) and hope there's good news in your future!
Madeena
There is no medicine like a loving husband. I'm so glad you have one, too.
Madeena
I have to let my dogs out several times a day. That helps. I have several dr appts a week. I force myself to put some form of make up. It helps. I’ll leave running marathons to others! I wash even one dish at a time to stay busy, but when I crash, I crash.
April, enjoy your bunnies! grew up with pet rabbits, and miss them. where we live considers them livestock, are banned. do you have any pictures to post of them? would love to see!
FM, you snared me in with organic grocery store. when do we move to the complex? need a change of pace!
My daughters friend has cystic fibrosis and has lived way beyond her original life expectancy. She and her husband are adorable and bubbly people. They have wanted a child for a couple of years. Well, they very carefully and under supervision of a team of doc's able to get pregnant! Mommy was able to carry the baby 7 months. Hattie was born 3 lb, 1 oz. Her first pictures were amazing. Such a tiny little girl. Yesterday I got a text from Mommy. Hattie has been home for a month and now weighs 6 lb, 2 oz! I got a picture sent to my phone of my 3 year old granddaughter holding her. She is doing so well! I am so happy for them I could burst! Mommy is doing very well too. She will live to a ripe old age with all of the technology that is offered her today. Praise!!!
Kitty
You just made my day Kitty! Thanks so much for sharing!
My first bit of good news is that I had a great checkup at the neurologist. Meds steady, continue what I’m doing. I’m grateful that (for the moment) I seem to be on the right track. My second bit of good news is that my husband and family have really started to understand what I’m going through and support me more than ever. Loving them all! My last bit of good news is that I found this group. There is no support group where I live (so weird, being in NY), but judging by what I’ve read so far, there are so many great people here. And my very best piece of good news is that I had an amazing carrot cake today. Mmmmm.
Bunnybumps, those are all awesome. You will like it here. It's a good place for friendship and information.
It's especially good news that all was well at the neurologist and your meds are stable. I go to my MD tomorrow. I always get a little nervous before appts. I want to make sure I don't forget something important.
Welcome to LWF!
Kitty
Hi Kitty:
My nephew has CF and he has taken on the goal to cure it!!! I am so very proud of him and him determination to achieve his goal. He is working on his doctorate in genetics. He has decided not to have a girlfriend or have children due to his disease. I will have to share your success story with him.
I am waiting on a phone interview for my disability claim. Do you have any pointers?
Pam
I’m amazed at hearing more and more of those who have CF. My son-in-law has it and works with a doctor who works with medical trials. He volunteers to participate whenever he can! Thankfully, my daughter isn’t a carrier and they went through 3 IVF implants and the last one was successful! The twins I spoke of earlier continue to make every day a good day for all of us in the family. I am amazed at the strength CF patients have!
About a phone interview from SS - best advice I got was just to be honest in your answers. The questions are some of the same you had to answer on the application along with a few others. You can update them on any additional findings, symptoms, new doctors or appts. you’ve had recently. Make sure you have addresses available for new drs. It’s not as bad as it sounds. I was given the name and number of the person who called so I could update her if needed. Make sure you have writing utensils by you to take down any instructions or info they give you. I know you’ll be fine - one step closer!
Hi Pam. Your nephew sounds like a very enthusiastic guy. Good for him. It sounds like he is doing what my MD did. She has fibro and used herself as a gineau pig all through school.
Our little friend and her husband did all kinds of genetics testing prior to getting pregnant. Plus she had to follow certain criteria for several months prior to getting pg. She had to have a shoulder surgery prior to the pregnancy and heal from that plus keep her lungs clear for quite awhile. She goes in to the hospital regularly to have her lung treatments. They know her well at the university hospital.
As far as your interview goes, just have all of your information ready. Doc's, meds, psych doc if you have one. Best wishes with this.
Sandi, I am amazed too. Especially amazed at how effective treatments are now. Our little friend had to be hospitalized while she was pregnant. I watched some of the treatments. It makes you feel like the medical community is progressing. Even gives me some hope for all of us.