OT August Chit Chat

[Jeanie Z]

:) Linda I am glad your husband is home and feeling better. Y'all are in my prayers. Jeanie :)

[Virginia]

Cat, I didn't want to say anything for fear you were too sad to talk about it. I am happy for you and TC and for beautiful Tuffy. He is a beautiful cat.


Thanks to people like Cat, Cherie, Linda and others who pioneered the way for some of the rest of us. It reminds me of why I fight to stay on Rebif. By the way, just a little news about that. I received a telephone call from the pharmacy where I get my Rebif. They found me a grant. I have already received it. I paid for one shipment that was sent this week, because the grant runs through next May. I don't want to use it up since, as those of you who are on Medicare Part D know, the highest payments come the first couple of months of the year. Actually, I could file for the co-pay retroactively, but prefer to save that money until January and February. I have figured it up and it will run out in early February.

I thought it was so nice of the pharmacy to find this grant for me. I was so angry when they wouldn't help me earlier, but lo and behold, the lady remembered me.

[agate]

Virginia, that's wonderful news about the Rebif funding--and you won't have to worry about whether it will be renewed for many months yet.

[Sunshine]

Yes Virginia, there is a Santa Claus!

[SuzE-Q]

Virginia, what a wonderful, unexpected surprise!

[Virginia]

Thanks everyone! I was delighted to say the least. I do not want to give up my medicine.

[stillstANNding]

I’m very happy for you, Virginia. That’s a relief, I’m sure.

How’s your eye?

We went to an excellent Greek restaurant today. I had the Greek egg lemon soup and MIL had artichoke- spinach soup. Peter had a roasted veggie sandwich in a pita and we all had really good Greek salads. :-). Vicky would read this and get hungry.

ANN

[Howie]

Heck, it's making ME hungry!

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Virginia ~

I join the chorus of celebration that your medication situation has been resolved! What a relief for you. It's always wonderful, when something good happens.

Linda ~

Sending healing prayers for John, and for you, as I understand how stressful it can be to care for an ill husband. If you need help, please don't hesitate to ask for it, whether from family, friends, or a visiting nurse.

ANN ~

We love Greek food too! You're making my mouth water. Our favorite Greek restaurant closed for years, then the owner's son reopened it with a different menu (geared toward millennials, I think ~ tapa). He then closed down, and there are no replacements near us. Nonetheless, unless it can be delivered, we won't go out to pick it up.

We also miss Indian food. That is just too much work for me to prepare any longer. And my Greek meals never compare to the real thing. Long before we met, when he was young, Jim vacationed a few times in Greece. So, he wants authentic Greek cuisine. And, I'm not Greek.

Love and prayers for all ~

Love & Light,



Rose

[Cherie]

Virginia,
I think I would still be on Rebif if I could get consistent funding. On Medicare, I always had to pay the first $4800 then once I was in catastrophic coverage area I could get funding for a year (generally by May or June) However, the "year" always resets January 1 and funding is never open for MS drugs then so there was great inconsistency that I lived with for about three years before just plain giving up.

We seem to be collecting newly widowed people after church on Saturday evenings and bringing them home for dinner and conversation. We started this about 15 years ago with Jacques, a former POW from Paris from WWII who had been widowed twice. He went with us to church then home for dinner and Yahtzee every Saturday evening. He died a little over two years ago and Steve, who is my age started coming occasionally after his wife died of Melanoma. Now we have Dorothy for the past 4 months and tonight Juliette joined us. Both have lost spouses recently. It seems we are a place where folks come for a casual home cooked meal after church with others who know what they are experiencing. I see a network of friendships growing from this. Food is simple and generally comfort food although occasionally it can be sirloin tips or pork chops or chicken on the grill with a big salad. Tonight was ground turkey sauteed with onion and mushrooms in a gravy over rice and peas and coffee ice cream. You see folks coming in tense and going home smiling and relaxed.

[Howie]

I sure am feeling tense......Cherie!!!

[Virginia]

Ann, the man I saw for 18 years loved Greek. He had spent a lot of time there. I also love it, but do not have anyone that cares to go with me to a good Greek restaurant. I have been thinking of going an picking up something to take out, but the best Greek restaurant (or I assume it still is) is not close to me. You made me want it even more.

Cherie, there always is that problem of funding. If the Pharmacy had not remembered me and gotten it for me I would not have it. This is a place I had not heard of. It is not PAN. The letter that I got from them said it was from June 29th through May 31, 2019. However, the money will run out by early February, so it will not last that long and I don't know if they will have more or not. It is anxiety provoking to say the least, kind of like living on the edge all the time.

You are doing the very best thing you could do for these people who have lost their spouses. Hopefully, they will form a friendship on their own to share with. I was in a grief seminar after that happened to me and 5 of us bonded and stayed close, having dinner, etc for years. We all knew where the other one was in their grief. We were all widowed in either February, March or April of 1987. Everyone is dead now but me. I was the youngest, but still just as close to them if not closer. They kind of tried to watch out for me. One of them sent me to the Doctor who finally listened to me about my MS symptoms and diagnosed me, while other Doctors just thought I was either crazy or complaining. I often wonder what I would have done without her. She was the one person I felt comfortable turning to for many years. I miss them, but her especially. If you keep this up you will be Blessed by what comes out of it.

[Sunshine]

Bless you Cherie.

[Catdancer]

So...….I spent much of yesterday in the emergency room of our local hospital. Had something called an "inspissated mucus ball"......basically a mucus ball in your...uh...."tube where solid waste exits your body.." I have an ostomy -- had the colostomy about 4 years ago, now, and have had no complications...until Friday night....when fecal matter started coming out of my rear end (where it comes out with "normal" people who defecate normally). Woke up Saturday morning having soiled my bed. Ugh. So, after almost an hour on the phone, being shifted from 'on call nurse" to "on call nurse" to "on call nurse", finally found the "right" one -- the one that accepts my health insurance and -- more importantly -- knew what was going on -- TC and I headed off to the emergency ward for basically a rotor-rooting out of my lower intestines.

Apparently, when defecation does NOT occur normally through the normal exit, mucus can build up, dry out, harden...then sit there, blocking movement of other fecal matter from moving up and out through the ostomy. In my case, the mucus ball was golf-ball sized...just sitting there, blocking up stuff. Now, I felt no pain, no particular discomfort...just the mess in my bed.

So, after filling out a bunch of forms, and putting up with having to be manually lifted up on to an exam table (the *emergency room* did not have a stand lift, or a hoyer lift!!), I was administered an enema... Then a wait for the enema to work.....then a manual probing and dislodging of the mucus ball....then a "clean up in aisle five"......my colostomy then sprung a leak (all that dragging around and moving around, dressing/undressing without due care). So I had to change the colostomy appliance. Again... *the emergency room*...did not have any colostomy supplies!! (I carry those with me wherever I go....). Then...finally....sent home. No particular follow-up....apparently these things "happen" with colostomies, and other conditions where bowel movements aren't "normal".....

How was YOUR Saturday??

[stillstANNding]

OMGoodness, Cat! What a time you’ve had! Get some rest! So, glad it wasn’t worst but still sounds awful.

ANN