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Erie #216151 01/24/06 05:32 AM
Joined: Dec 2005
Posts: 809
Ninja_AS_Kicker
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Ninja_AS_Kicker
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Posts: 809
Quote:

Greetings, Maggie!

I'm so sorry to hear you aren't getting more support at home. I'm lucky to have a very supportive family, I only occasionally run into trouble with people like roommates, friends, teachers/professors, doctors, etc. Hopefully your husband will eventually accept the situation and come around to being more understanding. In the meantime, we have lots of gentle hugs for you here!

I hate it when people tell me about all their pains... but I also try keep in mind that most of them are just doing their best to relate to me in spite of having little understanding or knowledge of the situation--or sometimes they are subtly asking for advice. It doesn't sound like this is what your husband is doing, though... so I don't know how this statement/paragraph really related to anything you said and maybe I should have just skipped it. Oh well, too late now.

Just a thought: Is the "new pain spot" you're experiencing in the middle of your chest around the sternum? I often get inflammation around the edges of the sternum, usually from dislocating or subluxing ribs. (On occassion the end of a rib even pops out beyond one side of the breastbone as a weird lump. Gross! ) Knowing of your hypermobility problems I thought it might be something to consider if the symptoms are anything like this. Not that I've found anything that helps it...

Sending some of those gentle hugs for you,
'Erie (-:




Hi Erie,

yes, the pain is in the sternum, and it followed the subluxation of the shoulders. My doctor said it was related to the enthesitis.

It is really helpful to talk with someone who knows about the subluxation and can understand what actually happens. When it happens it can really, really hurt....

My husband will just have to learn that if he is not going to make the effort to understand what is happening, then I am not likely to extend any sympathy when he runs into difficulty. I have been married for 29 years and I am fast running out of patience over his inability to understand that I do have these problems and that I am not making it up.

Maggie


Today is the first day of the rest of my life
Erie #216152 01/24/06 05:33 AM
Joined: Dec 2005
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Ninja_AS_Kicker
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Quote:

Um... what does "having a squiz" mean? Is that some kind of New Zealand talk?

'Erie (-:




It means having a "Captain Cook"


Today is the first day of the rest of my life
Inanna #216153 01/24/06 05:43 AM
Joined: Dec 2005
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Ninja_AS_Kicker
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Quote:

Hey Maggie, you mention the idea of writing things down. Actually, journalling is an extremely good way for us to keep track of what causes our flares and what helps alleviate them. Not to mention, it gives us something to refer to when we're trying to explain all of this to our rheumies.

I find it interesting that dehydration may have played a part in your last flare. I have to wonder how many of us forget about this. Thanks for the reminder.

Hugs,




Well, I have just had another of those days where I needed to spend most of the day elsewhere. I made sure that I had a bit more to drink but I am only a little better off than last week. There was a rather complicated reason behind having to remain in the shopping centre for half a day. Yes, I am slightly dehydrated again and yes my feet are aching like nothing on earth. This time my back is not so severe with the pain. It is time for me to get a cup of tea so that I get some more fluid. I had to follow up with getting the pink slip for my car so that it could be registered, and then when I got to the place where I was taking it, there was a lengthy delay, so I had to go back to the shopping centre. From there I went to the motor registry to pay for the registration, and to fix up my husband's e-tag. I was there for 45 minutes. However, I did some browsing in a store that I had not entered for over 2 years, and was surprised to find some interesting yarns and threads. Let's just say I made a small purchase for experimental purposes.

I will not be able to leave the house tomorrow because of roadworks that are happening outside our house. It is a real pain you know where. I will attend Mass and then come straight home and will remain here for the day. Oh well....

I am home and my feet are up so that they get a chance to settle down.

Maggie


Today is the first day of the rest of my life
Kiwi #216154 01/24/06 06:00 AM
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Ninja_AS_Kicker
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Quote:

tehehehe! Yup, that's New Zealand speak for "having a look"

Chelsea




Yup it is having a "captain cook" (oz slang for having a look)


Today is the first day of the rest of my life
Platypus #216155 01/24/06 06:10 AM
Joined: Sep 2001
Posts: 6,238
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Sep 2001
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Quote:

My husband will just have to learn that if he is not going to make the effort to understand what is happening, then I am not likely to extend any sympathy when he runs into difficulty. I have been married for 29 years and I am fast running out of patience over his inability to understand that I do have these problems and that I am not making it up.






If you've been with him 29 years there mst be a reason. Who knows? I guess I've learned that some of the dearest people to me just do not omprehend how much things ache and hurt.

A lesson that AS has taught me is that won't play tit for tat. I know some folks who hardly know me seem incredibly empathetic to my woes and admire what they deem to be my ocurage to live such a normal healthy bodied life in a unhealthy body. On the other hand, some folks who have seen me suffer my worst pains just don't get it. Once I was aghas by their "indifference" but now I suspect that the gift to empathize is like the abilty to have a high pain threshold. Some folks got it and some folks don't. I won't begrudge someone who just can't see my pains, because they truly can't see it. SOmetimes loved ones don't want to see it because they can't figure out what they should do for us, so they treat us normal hoping we will be healthy and normal by their standards.

To be absolutely honest there are days when I prefer to have te folks with the blinders on around me. I like folks who push me and don't treat me with kid gloves.

I am not advocating that yu absolve your husband's lack of sensitivity, just that you comprehend tt maybe he's too doggone scared to admit to himself that you suffer from a lifelong chronic serious ailment. Heck I try on a daily basis not to admit it to myself.

ANyway folks here ko t hurts like heck and that the best of our friends and loved ones will sometimes and in som cases all the time refuse to see our struggles.




L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait
stevec #216156 01/24/06 01:28 PM
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Steve, you are so right. That is why I vent here where there is understanding. My hubby definitely understands as he deals with RA every day of his life. Even my daughter said one day, "Mom you don't have anything everyone else doesn't have. (pain) and they deal with it" I never tell her anymore if I am having a bad day. On the other hand I have another daughter who understands completely and is very caring.

Some people have the gift of empathy and others have other gifts.

Possi


[Linked Image]

Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Platypus #216157 01/24/06 10:48 PM
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Maggie, I don't have AS, but my son does and I've watched him in terrible pain. Just wondering if you have considered the starch free diet/cleansing? I watched it first hand take my son from barely able to walk to pain free in a matter of days.....I wouldn't believe it if I hadn't seen it first hand.

My heart goes out to you and hope you feel better soon!

Cheryl

sink_painter #216158 01/24/06 11:41 PM
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Cheryl,

I have already asked people to back off on the issue of diet. I hope to be sent to a dietician and if I make dietary changes it will be in co-operation with a dietician.

Sorry, but this is a sensitive issue because I already have problems with some foods such as tomatoes, cucumbers, passionfruit and raw egg.

I know my own pain patterns, and I am not convinced that there is a food connection.

Cheers


Today is the first day of the rest of my life
Platypus #216159 01/25/06 02:47 AM
Joined: Aug 2003
Posts: 2,717
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ironchef
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hey platy, again

i don't know about australia, but raw egg ought to be a red flag if you're having tummy problems...salmonella risk.

look, this diet stuff is the corporate religion here; you don't have to buy into it...many other folks here look with
a bit of disbelief at many aspects of this whole nsd/lsd...there are many annecdotal success stories, but the
basic science/voodoo stuff is not generally accepted and is unproven except by their guru.

i stopped following anyone who was the sole source of all truth forty years ago.

we still can come here and play, you don't have to go to their church...nothing works for everybody

now watch the perfect firestorm of responses...

best
aB

alohaben #216160 01/25/06 03:33 AM
Joined: Feb 2002
Posts: 756
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Thank you Ben. You are a sweetie!

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