Hello Again

Post by **tex** » Tue Jan 15, 2013 10:09 pm

Glolria wrote:When I think about it, I bet that's true for all of us!

It's probably true for me.

Tex

ant · Post by **ant** » Wed Jan 16, 2013 12:23 pm

Good thought. Sometimes I like to think that my Ma makes new friends every day....

Best wishes, ant

ant · Post by **ant** » Wed Jan 16, 2013 12:46 pm

I believe that clinical truth is vital to all you read here, so need to report this. To quote myself about a week ago..........

Norma (female for "Norman") has visited me for two weeks without even one day of WD. I am not going to take another Entocort until Norma suggests she is leaving (I know how to read the signals). This has co-insided with me adding Glutamine supplements to my Vit D, Folic Acid, Vit B and Iron supplements. Lets see what happens next.

Well today I "read the signals" (some slight gurgling and loose bms in the morning. Also the day before I felt my gut was getting less stable - mild rumbles and need to have BMs (but not D and not too urgent) 6 times in the day. So this morning I took 3mg of Entocort. Later (in the evening) had urgent D (not WD). Let's see what tomorrow brings. It is not too bad (much better than when I was really reacting - this is not even a flare), but just a reminder that I am still not out of the woods.

Best, ant

humbird753 · Post by **humbird753** » Wed Jan 16, 2013 1:15 pm

Hi Ant - It is good when you can read the signs. Before I changed my diet there were so many flags and signs all the time. It never occurred to me that a day would come when I would be able to tell that things weren't right. I'm glad you're getting this back under control. Hope tomorrow is even better for you.

BTW - I loved your Christmas story.

Paula

Gloria · Post by **Gloria** » Wed Jan 16, 2013 9:13 pm

Ant,

As we've discussed on the board, it's better to stop a potential flare in its tracks. It's always discouraging when it happens because we think we have our MC under control.

I was in a bad flare two weeks ago after eliminating just one Entocort every three days (I went to a 2-1-1-2) dosage from 2-1-2-1). I panicked because 1 1/2 years ago, 3 Entocort didn't snap me out of the flare I had when I had gone off of Entocort completely. Now, I don't hesitate to nip it in the bud. I upped my dosage to 2 Entocort a day for three days, and to my amazement, the flare was gone. If you get better after using just 3 mg Entocort, I'd say you're doing very well.

I hope your D is short-lived.

Gloria

ant · Post by **ant** » Thu Jan 17, 2013 7:15 am

Dear Gloria,

I Agree.

I, like you, have come to face realities. I absolutely want to minimize the use of entocort, but nipping a flare in the bud is IMHO important...... not just for life, but for health.

I still hope we will find a another way out of the maze, but meanwhile.......

Best wishes, Ant

jgivens · Post by **jgivens** » Thu Jan 17, 2013 10:40 am

Your story Ant, reminds me of how my own mother got herself into trouble with her dementia lately. Last week she called me from the apartment she lives in independently in a retirement community with multi-layers of care. We watch her (my siblings and I--but I am the only one who lives in the same town with her--have been watching her to try to decide when she needs assisted living) as she is starting to struggle with decision-making more than not these days. She is 92 and I keep telling her that her brain does not owe her a thing any more!

Anyway, she called me and said, "Oh Jane, I think I have YOUR problem!" I asked what problem was that. She said, "Oh, I am so constipated." She is hard of hearing and did not hear me say, "That is definitely NOT the problem I have, Mom!" She went on to tell me that in her quest for help with constipation, she visited her friend down the hall who gave her Pepto Bismol. When I said, "Oh Mom, that is for diarrhea," she replied, "Well it worked for you." Imagine me yelling into the phone, "I have diarrhea Mom, not constipation!" She finally understood what I was saying and the mistake she had made. She wanted me to come over to her apartment and "fix" her problem immediately. Problem solving with her helped her to go to the "marketplace" in her hall and get some Milk of Mag. If that wasn't bad enough, I asked her how long it had been since she had had a bowel movement. "Well", she said, "I went yesterday, but it wasn't my usual time and I want my routine back."

People of that generation are used to having one bowel movement every day and are as focused on it as we all are because our disease won't let us think about anything else! Wouldn't we all like to have "our routine back"?[/i]

ant · Post by **ant** » Thu Jan 17, 2013 11:09 am

Dear Jane,

Our mums are the same age, 92. She was born in New York in 1920.

Best ant

P.S. I hope if I am ever in "assisted living" they will by then understand how to treat MC..... or we are done for

jgivens · Post by **jgivens** » Thu Jan 17, 2013 12:47 pm

I have given that a lot of thought and I think that probably our Baby Boomer generation will make such a big deal out of how we want to be taken care of in light of how we watched our parents struggle, that we will either be staying in our homes with help that comes in, OR the health system being as broken as it is, we may not have to worry because there won't be any places for us to be taken care of in the U.S. and we'll never make it to age 92.

I am not familiar with the health care system in Hong Kong, but anything has got to be better than what we've got here. You might do better to get your care there or in the UK than ever returning to the States. Matter of fact, maybe you should open a facility for people with MC in one of those places and we can all come and live in an MC commune of some type.

By the way, I am seeing an acupuncturist and Chinese Medicine doctor who is Asian and she just shakes her head at the diet of Americans. She has not offered me any herbs and I have decided that while and until, I get this flare under control, I probably would not take any, as who knows what I would have a sensitivity to. I think that the acupuncture is very helpful and if nothing else is a great stress reliever.

ant · Post by **ant** » Fri Jan 18, 2013 2:29 am

maybe you should open a facility for people with MC in one of those places and we can all come and live in an MC commune of some type.

That thought has crossed my mind....... As a Permanent Resident of Hong Kong if I needed expensive tertiary treatment, out- or in- patient, (which will become more and more likely as I age) I can get it free from the HK Government. It takes 8 years of working with a valid work permit and a clear indication that HK will continue to be your primary residence to become a HK Permanent Resident). Non-permanant residents would have to pay private. Even with insurance cover the money insurance companies would be prepared to dish out versus the premium costs would eventually not work out.

That is what would make setting up an international care centre financially difficult. Same would go for setting one up in Thailand. I looked into that viability a year and a half ago when assessing if my mother could be better looked after in Asia. (Although born in New York she is a UK citizen).

Although not impossible it will need some really visionary thinking from an Asian State to put into place policies and regulations to encourage the concept.

Best wishes, Ant

Gabes-Apg · Post by **Gabes-Apg** » Fri Jan 18, 2013 2:22 pm

my apologies for my tardy response - Gday right back at ya - sorry you had a unsettling xmas.

it will need some really visionary thinking from an Asian State to put into place policies and regulations to encourage the concept.

mmmm visionary thinking and govt - i think you are a dreaming a bit aren't you
i dont believe it will happen in our lifetimes....

and thanks for the post about the economist article, coincidently i was having a conversation with someone the day before on the exact same subject!!!! (i didnt discuss the cover artwork thoughts with them)

I hope the new year brings profitable business, progress on your place in Thailand, and settlement re your mum, most of all peaceful, contentment and wellness to your days
take care Ant
hugs Gabes

(ps they are sweaty hugs as we are in the middle of another heat wave - sorry )

wonderwoman · Post by **wonderwoman** » Fri Jan 18, 2013 11:32 pm

Ant wrote

I absolutely want to minimize the use of entocort, but nipping a flare in the bud is IMHO important...

I was doing so well. I have been off Entocort since the end of August when I started taking generic Claritin. After about 3 months I switched to generic Zertec and am still on it. One every morning. During this time, I too had looser stools several times that Imodium didn't take care of as fast as I wanted it to and took 2 Entocort for 2 or 3 days and I was back to normal again. Right now I am having a problem again and am going to take 2 in the morning for a couple of days to nip it in the bud. Sometimes I get careless and eat things I know upsets my system and it doesn't affect me, however, this past week I had too many such things and too much of them. I made spaghetti sauce with ground turkey mainly for my DH but thought I could eat a little also because I made it with turkey. I know I shouldn't have tomatoes. That was one thing, a lot of chocolate with forbidden ingredients another, and lettuce salad. Now I am paying the consequences. So back to square one with a very limited soft diet for awhile to get back on track..

Two steps forward and one step back.

ant · Post by **ant** » Fri Jan 18, 2013 11:33 pm

Dear Gabes,

I will take hugs however they are!

How are things with you? I have not read all your posts, but did noticed your dental issues.

Thank you for all your good wishes. I hope you have all the peace and wellness you so much deserve.

On the subject of Governments with Vision, you are right: I am, of course, dreaming.........but also, perhaps (to quote Peter Ustinov) "foolish enough to believe the best is yet to come".

Hugs, from a coolish Hong Kong, Ant

ant · Post by **ant** » Fri Jan 18, 2013 11:39 pm

Dear Charlotte,

We seem to be in the same place with managing this..

Two steps forward and one step back.

That is better then one step forward and two steps back.

As you can tell I am in an optimistic mood today.

Best wishes, Ant

Gabes-Apg · Post by **Gabes-Apg** » Sat Jan 19, 2013 3:07 pm

The Jaws (upper and lower) are healing after the dental work. I am really proud that i got through it with no painkillers, I have done alot of work on mindfulness and with guided meditations and relaxation techniques i coped ok! (even when there were complications)

my next adventure - moving house!
:kangaroo:

this week got notice the owner wants to sell my unit and i have to vacate. Moving in summer is not the ideal albeit i dont get to choose.
it will be my 11th move in 12 years (33rd in my life!!!) Lucky i am a super organised person and have colour coded label system for the boxes!

One place that i am looking at this week is opposite the park where i have taken quite a few of my best photos - how awesome would it be to have 4.5 hectares of beautiful council maintained gardens as my front yard!!! Full of plants and flowers every season, birds, butterflies, dragonflies.
If i am going to the effort of moving i am determined to make sure it enhances my life!!