OT September Chit Chat

[Parsi]

Happy birthday, Cherie.

[renee]

A Very Happy Birthday, Cherie

[Pegakafarmgirl]

Happy Birthday Cherie,,

Hi everyone,, rain,, yes the timeing sucks, but it is, what it is,,mother nature done sprung a leak,,

Labor Day, I was informed a hour before,, our son, his wife and kids, were coming over for supper,, so scurryed around, cleaning, setting more plates out,,"phew", done,,was fun having them there,, Sam I Am got her pictures taken,,kids played,, just normal stuff,,

Now I have to do supper tomorrow, night,have to,, doesn't sound right,,I offered,, since cattle is being hauled,,

anyone interested in the sacred cows ?,,let me know,, maybe we can work it out,,

later then,,

[Cherie]

Hi all,
Thanks again to ANN for reminding me to check in. Yesterday (September4) was my birthday. Worked for 7 hours then went to Ruby Tuesdays for dinner then out for an early movie "Hope SPrings" with Meryl Streep and Tommy Lee Jones. Very well done and so many truisms in a 3 decade depicted marriage that had lost intimacy. I recommend it for all couples who might have lost that spark.

Gary,
I did pulse steroids monthly for 24 months. Worked OK for the first 5 or 6 then my BP and heart rate started going really really high within the first hour of the infusion (done at home) and bu the end of the first year, we added several days of TN to the picture. Doc wanted to keep it going but I said no way. Took me years to recover from all the steroids and I have never lost all the weight gained on them (avg 4-5 pounds each month x 24 months). I've lost some but not all and my bone density deteriorated rapidly and blood sugars rose as a result. That too is not fully resolved.

Jeanie,
Thanks for keeping David and me in the loop. We think of and pray for all of you daily.

I am off to NY to do some more helping with my parents and tweaking their plan of care from Friday through Tuesday. It's a thousand mile round trip and I will again take Dad for his oncology visit then drive the 400 miles home from there while my sister drives Dad back home.

[Gary]

Gary,
I did pulse steroids monthly for 24 months. Worked OK for the first 5 or 6 then my BP and heart rate started going really really high within the first hour of the infusion (done at home) and bu the end of the first year, we added several days of TN to the picture. Doc wanted to keep it going but I said no way. Took me years to recover from all the steroids and I have never lost all the weight gained on them (avg 4-5 pounds each month x 24 months). I've lost some but not all and my bone density deteriorated rapidly and blood sugars rose as a result. That too is not fully resolved.

I thought that you had done it in the past. If you did gain that much weight you must have carried it in a shopping bag because you certainly didn't look like it.

Had my follow up appt and so far so good. Everything is back down to where it is suppose to be. I did not do a taper this time. mostly because I am interested to see the difference. And to be honest I am REALLY hateful right now. Besides feeling yucky. I yelled at my wife yesterday over the fact that she wanted to look at the guide on the Direct TV. Really stupid huh?

It is still warm upper 80's low 90's the neighbor is combining dry beans. If I was energetic I would get the baler out and follow behind and put up some bean hay. But I am not. We have about 30 acres of colossal super sweet onions in the front field they have not been topped yet but when they do you better not be bothered by the smell of onions cause it will make a Kentucky colonel stagger! I am so tired that I estimate how many steps that I could shave off walking to the kitchen. I am normally more energetic after the roids. I guess I need to give it a bit more time.

We still have a ton of hummingbirds next to the front door. But the bees and wasps are returning I did get the lawn cut and readjusted the sprinklers. My putting green was looking a bit droopy. I miss my FIL he and I used to take advantage of the free greens at the local course for the end of the year. We used my front yard for the practice putts. And to be honest it was an excuse to ride around the course and drink diet Pepsi. (neither one of us were drinkers) It wold take us several hours and if we were REALLY lucky we could hit about 3 or 4 holes.

[Frog42]

Glad you had a nice day, Cherie!



I hope your trip to NY goes as smoothly as possible.

[renee]

No more Rebif for me.
No interferons, either.

My neuro took me off Rebif for a month, put me back on and took me off.
My platelets went down on Reebs and back up when off.
My mood is a tad improved but I feel like a lab rat.

Copaxone is next.
I've read the side effects- not bad- but i am going to have to get used to
the idea of daily injections.

Your positive Copaxone experiences or cheerleading would be greatly appreciated.

OMG, I am experiencing writing therapy on an internet forum.
I am a tableau of Niagara Falls. Kleenex ready,

Found out a new facet of Medicaid today.
Medicaid pays my Medicare part D premiums BUT
medicaid will not allow the transfer of a script from one pharmacy to another.
What the ...???

I must ask my doc to write another script because
the original script was filled at a boutique pharmacy which
doesn't accept insurance...hunh?... and didn't mention it on their website.

The tired, poor and wretched refuse of the nation feel unwelcome today.

[Gabriella7]

Late as Usual

Happy Belated Birthday Wishes to Cherie, Lots and lots of going ons here with doctor visits, telephone calls to docs, insurance companies, etc. You all know the routine..... Renee, please keep us updated on how the copaxone works for you. That is one I have asked about but not tried.

Gabriella

[Virginia]

Hi to All,
Just checking in to see what is new. Gary, glad you are doing better, but your tiredness sounds like it would match mine. A belated Happy Birthday to Cherie!

Jeanie, I keep you and David in my thoughts. Sorry both you and your Mother have been ill. This is just not fair...it's too much.

Peg, sorry the MRI's did not turn out perfect, but guess that would be too much to ask. Then you would not have MS. Sounds as though you are still busy feeding people.

Gabriella, most of the Doctors just don't get where we are coming from I don't think, or they just don't think about it. But that is a topic for our whine and cheese.

Renee, so glad your brother and girl friend were there with you for at least a while. Sounds like you had fun. Keep us posted on the Copaxone. I took it for six months.

Parsi you seem to be doing some entertaining as well.

Hi Sally, Ann and all the rest.

I am so tired tonight I can hardly think to type this. I am going to Hilton Head, S.C. tomorrow and will be gone until next Wednesday. It is the first time I have been away for a long time, but honestly at this point I am not sure it is worth it. I have had so much to do this week. Everything hit at once, and it usually takes me a couple of days to get over being this tired, so not sure how I will fair getting up and getting ready to go tomorrow.

I will check in when I get back. By the way, I expect all of you to be cured by then and you can tell me how you did it.

[agate]

Virginia, hope you enjoy your trip and time away!

renee, I'm surprised you were told you can't transfer rx's from one pharmacy to another under Medicaid. Every state has its own Medicaid rules, and maybe your state is different, but I've never had a problem switching pharmacies under Medicaid, and that goes for two states.

If you're on one of the DMDs, there might be an issue but it doesn't sound as if you are on them. I wonder if maybe somebody misinformed you about this.

I took Copaxone for nearly 3 years and thought I'd hate the daily injections but they weren't bad at all. Much easier somehow than Avonex, maybe because there were never any flulike side-effects.

[renee]

The NY state legislature is notoriously the most dysfunctional in the US.

Those people are making laws and have determination concerning public healthcare.
It is easier for a state senator to get off a charge of domestic violence than it is
for a medicaid patient to transfer a prescription.

I don't know if pharmacy #2 has correct information.

My dentist was told by their state appointed billing compny that as of 7/1/2012 he would not
be paid for medicaid patients outside specific managed care providers.
WRONG. As a dual eligible I am exempt and now must now file a complaint or
get the billers to correct their policy.

I hope copaxone works well.

[Jeanie Z]

:) Hi everyone. David and I saw the oncologist today and he was very nice. He did prescribe the Nexavar chemo pills for David and will see him again in 30 days. November will be one year since his diagnosis and he finally has a treatment plan. The side effects can be awful but maybe David won't get any.

My Mother is not being given the level of pain meds she has been on at home and she has a lot of bruises to boot and is hurting. They put her on a hard table for almost an hour then told her she moved too much for a good scan. She told them she would not do it again as it was a terrible experience.

Now they are talking about sending her to rehab. My sister has not gone down yet and Mother will need gowns, clothes, all with her name in them in rehab. When she went to rehab last time I was there and did all that for her and even took her clothes home to wash. I am really frustrated that my sister has not headed there yet.

My sinusitis is worse and I am coughing constantly and bring up a lot of flim and my nose is running bad. I also have a headache. I am going to start on antibiotics tomorrow and I am hopeful they will knock this out..

David took his first dose of the chemo pill this evening. The most common side effects are rashes on hands, feet and face, diarrhea, hair loss, tiredness, etc. David has had a handle bar mustache for many years and hates the thought of losing that but they told him he probably would lose it.

Thanks for all the thoughts and prayers. Jeanie :)

[renee]

It takes a special guy to wear a handlebar moustache- with or without he will still be special.

I am glad your David has a good oncologist on his team.
That stuff makes a big difference.
Your mom sounds like my mother who would tell the hospital people to back away
(or she'd rip their heads off if they came near her again).

Sinusitis- natures way of showing solidarity for your loved ones.
Feel better.

-r

[Jeanie Z]

:) Hi everyone. I'm glad the board is up again, thanks.

I had an email from Gary and his house burned down. They escaped with the animals and their lives but I'm sure they have an awful time to go through. Gary if there is anything I can do to help please let me know.

My Mother is in rehab and my sister is there for 5 days. I am still having bad sinusitis. David has been on the chemo pills less than a week and so far only a bit of diarrhea. Hopefully he won't get the worse symptoms. Jeanie :)

[SalpalSally]

Just received my e-mail telling me we're back on. YEAAAAAAAA!!!!!No smilies Mike..OMG.yikes..lolSee ya in the morning...nighty nite..OOPS no paragraphs either....