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-   -   Updates on me and notes for all of ya (https://www.neurotalk.org/myasthenia-gravis/104630-updates-notes-ya.html)

JCPA 10-12-2009 08:12 PM

Hi Connie,
I will be lifting your dad up in my prayers tonight.

God Bless
Jujuan

SharS 10-12-2009 10:57 PM

Hi Connie:

I'm thinking of you and praying for you and your family tonight for rest, comfort and strength. My husband and I are praying for your Dad that he will stabilize and be able to eat again. I have been through what you are going through now - please try to find time to take care of yourself at least some - to eat and get periods of rest in the day as much as you can.

There are many people here thinking of you and praying for you.

Take care,

redtail 10-13-2009 05:40 AM

Hi Connie,

still thinking of you all, sending up prayers for you.

Take care
Kate

Nicknerd 10-13-2009 03:48 PM

Hi Connie,

I'm thinking about you and your family at this time and praying for better health.:hug:

ConnieS 10-14-2009 12:17 PM

wow
 
Everytime I login, I'm amazed at the influx of encouragement and short messages I get from u all. I'm overwhelmed, and u guys are really a source of support for me.

Thanks Rach, Sue, Pat, Jujuan, Shar, Kate and Nicky! The prayers are workingg.. I think. Lol..

Currently Dad's on Maxolon and morphine, also on oxygen as his oxygen stats dropped to 90. They're hoping that the maxolon helps his intestines to move, and also the side effects of morphine will move it. I'm really not sure how all these meds work, but seeing dad weaken by the day is pretty painful and hard to bear. I try not to think of it all, but just feel like giving him a great big hug. But I'll prob hurt him if I do that..

The good thing is that the Maxolon and morphine seems to be working, they're drawing lesser stuffs out from his intestines now. So for trial, he's allowed 250ml of water a day. Lol. So its basically a sip every now and then to see if he can digest it. I hope it works out.

The side effects of those drugs are that dad's drowsy always, so cant really talk to him. I miss him, miss the bubbly him.. wish that he could tallk to me, but I guess I'll be happy as long as there are still options for him. If only the options are easier to choose.

Now its on a day by day basis, symptom treatment they say, rather than treat the cancer. I really hope he pulls through and returns home.

I made a silly prayer the other day, praying that I really don't mind givin up my life if it could save my dad. My mum probably cant do without him, but can do without me. The pain is quite different, but I know its a silly prayer. but I couldnt help making it. Lol.

I am hoping that we will not need to meet the doctors, for everymeeting seems to bring worse news than the previous ones. Lol. I'll rather everything remains status quo. Or gets better.


Its getting harder to walk now, I wobble with my stick sometimes. I struggle with my bag. At the end of the day, my limbs ache like crazy. This forum is source of comfort for me.. I'm sorry if I've missed out on the happenings here, I promise I'll keep myself sane. Lol..

Really really thank you all for listening and for the encouraging words. :grouphug:

AnnieB3 10-14-2009 05:17 PM

Connie, I'm glad things are getting better - hope they continue to do so. You are such a trooper, dealing with your own health issues, your Dad's and those of others. I know that when my Dad was sick, it tore me apart. I hope he gets completely better.

Please read this. I think everyone should read prescribing info, even though it's hard to get through.

http://www.webmd.com/drugs/drug-5686...0&pagenumber=5

The other thing Morphine does, which is really bad for people with MG, is to make muscles weaker. Pain killers also slow peristalsis (the way food gets moved through the intestines) way down. I have to wonder if the Morphine is to blame for the drop in O2 stats. Morphine caused me to have moderately severe breathing and stopped up my intestines. Those protein fruit drinks they have in the hospital is what worked to get things moving.

I've made those "deals" too. I rather doubt anyone, especially your Mom, would do okay without you!!!! Geez. Every single person on earth is important. Look what you've done for that ALS/MG guy's Dad. No one deserves to suffer or die and it's so damn hard to deal with it, especially when it's happening to a parent.

I hope you are feeling okay, besides being so morose! ;) Seriously though, lots of thoughts coming your way and I hope that all of you will be better.

:hug:
Annie

JCPA 10-14-2009 09:07 PM

Connie

Hope things continue to progress well for ya'll. Don't think anything about your prayer regarding your life being required so that your dad could live. Actually that comes straight from the heart. God's word says "Greater love hath no man than to lay down his life for another."

Look to God, He is your source of strength and comfort. Storms rage within our lives and everyone experiences it. Sometimes we don't understand God's will, but we know that His ways are better than ours. Keep looking to Him, He will never leave nor forsake us.

I want to share this comparison with you. We do have times when we are on the mountain and sometimes in the valley. Mountains usually don't grow anything on top, most of the time it is mainly rock. Valleys always flourish with lots of new growth and life. We we are on the mountains, we don't grow much but when we experience valley's...times when we struggle....we grow just like new growth, we come out on the other side a better person.
May you find encouragement during this time.

I will be sure to keep remembering you in my prayers.

:hug:
Jujuan

bluesky 10-14-2009 09:14 PM

Connie,

It makes me so sad to hear about what your dad and what you are going through. When I read your posts about your dad, it reminds me so much of what my late husband (who died of cancer) went through. It just seemd like it was one thing after another. It's hard to see so much suffering. Unbearable, really, when it's someone you love. At least with chemo I felt like maybe the suffering would be worth it in the end. I understand too, the shock of hospice. It feels so much like giving up, like the first stage of a really scary journey. I remember the nurses telling me that people do go off hospice sometimes, although in my husband's case there wasn't any real chance of that. It did turn out to be the best thing we could have done though. Your dad will get so much attention and help from hospice and they really are experts at making patients comfortable. And the hospice nurses are the kindest, most compassionate people on the planet.

I hope this doesn't sound insensitive, but I laughed when I read about the neuro who told you it was all in your mind and you should just relax. How ridiculous is that?!?

I'm so sorry you're going through so much. I'll bet you never thought you'd be where you are. It's not fun and there's no easy way to get through this, is there? I completely understand your prayer. I've said lots of crazy prayers. Now I just pray - if this is how it's going to be, then okay. Just please help me to accept this and take the misery and fear away. Just let me feel some comfort.

I'm not a particularly religious person, but I sometimes do say that prayer.

Of course I'm not comparing my situation to yours, you have many more health challenges than I do. But I do understand the feeling of everything falling apart and watching someone you love suffer so much.

I don't post as much as I should, but I want you to know that I follow your posts and you are always in my thoughts.

Ally

redtail 10-15-2009 03:18 AM

Hi Connie, :hug:

thanks for the update.
I hope your Dad's able to keep the water down.
Sorry to hear you are a bit wobbly and in pain,
thinking of you still
take care of yourself
Kate:hug:

TxSimon 10-15-2009 09:56 PM

Connie,
I am praying for you and your family. Keep the faith! We are here for you!
Big Hugs to You!
Simon


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