OT March Chit Chat

[Jeanie Z]

:) Hi again. I meant to send Sally some smilies. Chin up! Jeanie :)

[SalpalSally]

Thanks Jeanie, feeling much better today. I must have had a bug, making me feel down.

I hope things are a bit better for you, now that your awful flu is gone.

[Cherie]

Except for being quite tired at the end of a 10 hour work day, David seems to be pretty well recovered and says he is in no pain. Life is so much less harried when I am not adding his work schedule to what I accomplish during the day.

Have had another friend (60) die of complications of MS this week. She had aspirated, developed pneumonia that would not respond to treatment and was dead in three days. The Doc had told her almost a month ago that her swallowing problems had gotten so bad, he recommended a feeding tube be placed in her abdomen. Her husband couldn't handle the thought that she would be unable to eat all the foods he so lovingly prepared for her and was specially making soft to go down better and wanted to wait for a few weeks and see. He is a wreck now thinking his hesitancy hastened her death. She was the third friend from the MS Dream Center here to go since Christmas.

Wednesday, we got together at the Dream Center for a "tears and fears" discussion in lieu of losing so many there recently and one of the most prominent and busy persons there expressed that with her gone, he was bumped up to #2 on the list because there was only one other that regularly came that was worse off than he. It was a heavy but good sharing of our fears and memories of those gone and it ended up being a turning point for some who were on the fence about doing something to actively stay well.

Spring-like partly sunny day with temps in the 40s here today.

[Gabriella7]

Catch Up

Hi folks, I haven't been to the Chit Chat thread in a while. I've been posting on my IVIG infusions thread. I can't remember what everyone has said individually so I'll just comment in general. It is so hard to even find a friend these days for myself. Some have died, some have moved away, another is taking care of her 95 year old Mother.

I was hoping to find a friend at the MG meeting after I got the diagnosis but the meetings are held all the way across Atlanta in another county that is too far for me to drive. There are no MS support meetings either as the meetings that are held here are held by the BigPharma companies and different people come to each one. They are primarily for newly diagnosed to hear about the drug that is being promoted.

I'm still having weakness after the IVIG infusion and after reading this thread I wonder if it is the MS acting up. I haven't found the IVIG to be giving me any strength which is what it is supposed to do. Sorry to hear of the deaths due to MS complications. Seems they do come in 3's as we have been to 3 funerals in recent months as well. We just go to the visitation time with the family so we don't have to stay longer than I can tolerate.

As far as the weather comes here we have had spring, tornados, now back to winter, and prediction of more tornados on friday. This past friday we had one that passed over about 5 miles from us and some trees were down due to 45 mile winds. We do have a safe basement to go to when the warnings come. We live in tornado alley as all the tornados have been tracking either to the west or the east of us recently.

Take care everyone.......

Gabriella

[Parsi]

Aspirating is one of my fears.

[stillstANNding]

Parsi, I spent some time thinking about that last night, too. And she was only 60- that's young. Maybe reading about MSers that climb mountains is not so bad after all.

Balance in all things.
ANN

[Gabriella7]

Same Symptoms

Parsi, Yes, I too have a fear of aspirating. Mother's cause of death was aspiration pneumonia. Most all of the symptoms which are related to MS are also symptoms of myasthenia gravis. Chewing or swallowing difficulty, causing frequent gagging, choking, or drooling. I get coughing episodes from swallowing liquids which go down the wrong way. Sometimes the food seems to get stuck about half way down the esopagus and that really hurts. The muscle weakness of MG worsens with activity and improves with rest. It causes weakness of the voluntary muscles.

I have changed my diet to mostly soft foods which don't require a lot of chewing and sometimes I even substitute a liquid meal replacement. Also, I have stopped trying to talk while I eat as well and totally concentrate on the food.

Gabriella

[Virginia]

I guess many of us have the same fears. I have often wondered how long it would be if I choked before anyone found me. Since there is no one coming and going and if anyone called they would just think I am out. I had my esophagus stretched one time. It helped for awhile but I am now having problems again. I just try to be careful and not think to much about it.

Ann, walking what sounds like quite a distance and working out!!! I am very proud of you. Bet Pizza guy is also.

Wonder what is going on with Renee. She usually checks in by this time of the month. LaCelia is missing, and of course Howie. I know he has a computer problem. I am glad that I had gotten a new computer before the board was changed. I might have had a problem also.

I am going to clean the shower and I keep putting it off. Don't know why I dread that job more than most others.

I hope all of you are having a good day.

[Cherie]

I literally can't talk with food in my mouth or I risk the possibility of it slipping down the wrong way. Especially if my head is turned towards the right and I am looking at the person to whom I'm speaking. Did so at a party for David's office one night and had a piece of steak get caught. My last memory before losing consciousness was Rob flying across the table with his fist headed for my solar plexus. Then I was being supported by two of the women as I came to laying across the table. Just have to be careful now that I know it can happen.

Ellen-Ora will be missed. Her husband Jim came and joined us at the Dream Center for lunch yesterday and says in another month or so, he plans to come back to the Center to lead a class. He misses the friends he and she saw so regularly there.

[Whisper]

Winter in Ontario Canada was pretty mild this year. YAY. That being said, we have decided that since our daughter is graduating from University this year and getting married in August, that there is no need for us to keep our apartment here. I am in the process of packing things up yet again. I am tired. (Which is why I haven't been on here and haven't been reading much either, Sorry).
Still having heart issues and getting more testing done next week. (Could be why I am so tired?) New grandbaby was due yesterday but he (yes HE) is being stubborn and not making an appearance as yet. Meanwhile granddaughter is still delightful and fun to be around, if not exhausting! lol
I turn 50 in a couple of weeks. Since I got sick way back in '98 it has been a far-off goal to make it to 50 (there were many days/weeks/months I didn't think I would) Now it seems it's a strong possibility that I'll reach it!!!
Hugs to all, and prays that everyone has a great March.
Lorraine:)

[Virginia]

Hi everyone! wanted to say hello to Lorraine since we have not seen her in a little while. Glad to see you back, but sorry you are feeling so tired. Just the thought of packing up and moving again is enough to make anyone tired, but I know that you have other problems bigger than that.

Hope your Grandson is born healthy and with no problems to Mom. I bet just seeing him will perk you up some. It would be delightful!

Let us know how the test go next week. We look forward to hearing from you.

[Cherie]

Happy almost birthday Lorraine! And happy grandmothering. And may the move be peaceful as possible given the circumstances and timing. And take time to rest....(I don't always take my own advice, I know!).

Ice on the car when we went to come home from a friend's house a few minutes ago. It was mid 40's when we left the house at 4:30. We were forecast to get snow yesterday and again today but so far have not seen it and the sky is clear and the moon is HUGE tonight. Seems like it's twice the size we normally see it and it's quite almost orange in color.

I had a burst of energy today and swept and vacuumed the entire downstairs and mopped 2 and a half rooms with swiffer moist pads. REALLY dulled and streaked the floor. I guess tomorrow I have to really mop and in this house, that's about an hour and a half job just to do the areas without carpet. Also changed the bed and did 4 loads of laundry. Yesterday I repotted most of the plants and tended to and pruned the 5 large ones that were not done. So...feeling good here!

David's saying yesterday and today he's not bouncing back like he thought he would. He's off all meds but is tired and a little sore (little sore? I was a LOT sore this far after cervical fusion !). But he's doing all his driving and putting in 10 hour work days and that should have someone who is not 4 weeks post op tired. He doesn't see it that way.

Jeanie,
How is your David doing?

[Whisper]

I now know why I am so tired...I READ Cherie's account of her day! Good heavens woman....I'm exhausted even reading all you do.
Lorraine :)

[Jeanie Z]

:) Hi everyone. I am still not at 100% of my usual self but I'm taking my vitamins and trying to get there.

David is doing ok but he is very worried. He talks about maybe changing his will, etc. Monday we get to see the liver doctor and find out if he sent David's paperwork to Washington to be put on the liver transplant list.

On the 20th David has a CT scan and that will show if the chemoembolization is working and if more of that is called for.

My Mother's 92 birthday is the 19th but I will not be able to go see her then. MY DIL has to wait until she is less radiated to have a scan to see if the radiation zapped the spot.

Our dog Little Bit (a Bichon) is 15 in May and we've been to the vet twice in a week. His anal glands may be infected. We go back on Saturday and they will know for sure then if they are.

I hate this time change. It will take me weeks to adjust to it. I read all the posts and I'm glad to see so many checking in. I'll try to read more often.

Cherie tell David he is not listening to his body. I finally learned to do that. Jeanie :)

[Cherie]

Well...my get up and go, got up and went! I was up in the night to take some Ibuprofen, I ached so. Had to modify pool routine this morning to nurse some soreness from non-regular activity. Was going to mop today but slept late (time change) and don't have the time or energy before I have to meet Becky and the kids at a point midway between here and where she is to do some career wardrobe shopping. Graduation from grad school is only 5 weeks away and I have over $200 free merchandise at Macy's that I just don't need. It'll be good to see her and the kids but I'll be tending them while she's trying on clothes and Eli, at 9 and a half months is well over 20 pounds.

Jeanie,
glad you're improving. I know David has to be worried and it's likely affecting his easy going nature. This will smooth out when he has a clearer grasp on what road he will end up taking. Now there are so many possible treatments and outcomes it has him running in a ton of different directions. Hopefully that will straighten out after this next appointment.

Very windy, sunny and cool here today(44)