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Lilja
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Post by Lilja »

Yes, this is also my experience, but then I think "how can I expect them to understand the disease, when I myself have trouble understanding it".

They are in the dark, and sometimes I'm in the dark as well :grin:

Lilja
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Psoriasis in 1973, symptom free in 2014
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tex
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Post by tex »

Erica,

Like Jari and Lilja, I certainly understand your feelings (I've felt the same way — probably most of us have had that experience), but probably your step dad was just trying to be helpful and he was just being sincere in the best way he knew. I've been dealing with a very restricted diet for over 13 years now, and one thing I have learned is that they eventually learn to understand that I am serious about my diet, and they understand why I have to be careful about my diet, and they don't seem to hold any of that against me, but I doubt that they will ever figure out how to be comfortable around me at mealtime, nor will they ever be comfortable discussing my food requirements. Why? Because I am so radically different from everyone else they know. Because of that they have no precedent nor any reference for learning how to act around someone like me.

And of course the fact that they're so uncomfortable subconsciously makes us uncomfortable. But we have to learn to overcome that, because they really don't mean to hurt us — they're just frustrated because they truly don't know how to help us, either. They want to help us, but they don't know how. And that can cause them to say things that may not sound to us the way that they intended. And like them, early on this communication issue can lead to misunderstandings and even resentment, because we're still sensitive about our condition and the way that no one seems to understand us. Lemme tell you a little story about sensitivities and the unrealistic hostile feelings that they can lead to. I hope that this will cheer you up a bit.

This is a true story that happened to several of my neighbors many years ago, but I consider it to be a very enlightening story as long as it doesn't offend anyone. These guys were all farmers and they had a deer hunting lease on a ranch roughly a hundred miles west of here. In Texas there is very little public land, so anyone who wants to hunt and is not a landowner is pretty much forced to either have close relatives who own a ranch and who will allow him or her to hunt, or they have to lease hunting rights on private land, and hunting rights are not cheap, mostly because the hunting is so much better on private land, and the landowner typically (though not always) furnishes a good camp house, utilities, etc.

These men had a weekend of hunting and relaxation planned, so the night before, they got together at a local beer joint to make the final plans, and after they drank enough to loosen up a bit, one of them decided to invite one of their drinking buddies (who had a reputation as an outstanding camp cook, but who also just happened to be an alcoholic) to come with them on their trip to do all the cooking so that they could concentrate on their deer hunting and their card playing and drinking beer. :lol:

But the next morning as they were packing to leave (and the alcohol was out of their system), the gravity of the situation began to weigh heavily on their shoulders. The tough old rancher who owned the land where they hunted was extremely strict about enforcing certain rules while on the ranch. Everyone knew that one violation of any rule would result in every last one of them immediately being ordered to leave the ranch and never come back. That probably seemed like a fate worse than death to these guys because the ranch not only had some of the best hunting around, but decent hunting leases in the area were almost impossible to find, especially at the reasonable rates that they were paying. They had been hunting there for many years, and they certainly did not want to give up the lease. They got along quite well with the rancher even though he was an ornery old cuss who always seemed to have a chip on his shoulder, by being as polite and well-mannered as choir boys whenever the rancher was around.

But the old rancher had one physical defect — he had one glass eye. And for some reason or other he was extremely sensitive about it and they all knew that he would fly into a rage if anyone ever mentioned it or even looked cross-eyed at it. So the absolute drop-dead rule on the ranch was to never, ever mention that glass eye while the rancher was within hearing range.

I don't know if this was actually his name or a nickname, but everyone called their alcoholic guest Noie. At first they thought that maybe he wouldn't notice the rancher's glass eye, so they had nothing to worry about. But the problem with that was that the glass eye was not a very good match for the rancher's good eye, so it was pretty much impossible to overlook, even for a drunk. And Noie stayed drunk so much of the time that this was his normal mode of operation and he always seemed to be surprisingly alert, so on the drive out to the ranch they warned him that the rancher had a glass eye that he was extremely sensitive about. And they also warned him that no matter what else he did for the rest of his life, he should never, ever say one word about it or stare at it or anything else, because they would all be thrown off the ranch if he made that mistake.

They were fairly confident that this warning would do the trick, because Noie had lost an eye in WWII, so he had a glass eye himself. He had a habit of looking someone straight in the eye and squinting whenever he wanted to make an important point. So after they finished lecturing him about not mentioning the rancher's glass eye under any circumstances, he looked them straight in the eye, squinted, and snarled in his gravely voice, "You don't have to worry about me".

When they arrived at the camp, they set about unloading the groceries and beer, and getting everything in order. It didn't take long before the door opened and in walked the old rancher. After a round of greetings and handshaking, one of them introduced their guest to the rancher and told him that he had just come along to do the cooking, so he would be staying in camp and not doing any hunting. The rancher nodded and said, "That's fine". And then he turned and looked at Noie. And Noie looked at him. And before anyone could say anything else, Noie squinted and stared at that glass eye and blurted out in his gravely voice, "You're a one-eyed sumbich aintchu."

Suddenly the room was deathly quiet. No one even dared to breathe. They stared in helpless disbelief at the rancher's face, slack-jawed and desperately searching for a clue as to what was going to happen next. Noie continued to squint at the rancher's glass eye and the old rancher glared back at Noie, without saying a word. Then after a few seconds that seemed like an eternity, Noie continued in his loud gravely drawl, "Just like me". And then he punctuated it with a wide snaggletoothed grin. The rancher continued to stare for another short eternity and then he broke out laughing, grabbed Noie's hand and pumped it up and down, slapped him on the back and they instantly became the best of buddies.

How's that for an interesting allegory.

Tex

P. S. Jari, after so many years it no longer matters to me how good it might smell to others because to me it smells like poison, so I don't have any problem hanging around watching them eat their poison. :lol:
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Erica P-G
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Post by Erica P-G »

Thanks Tex,
That was pretty amusing 😉
I can't help being such an Empath, I guess I need to learn to not hang on the actions an verbiage so much.

The words "do unto others" comes to mind at times like this. I'm always rehearsing the best possible way to approach things but that's just me. Can't expect or hope that I will be with like minded family. It is what it is..I need tougher skin😉

Thanks Jari,
I appreciate your sincerity it brought a smile to me. Like Tex says, we have to get to a point that what we see or smell is a reminder of pain an poison to the body. It's gonna be difficult for a while not gonna lie.

Reading these posts really help keep me centered and not alone.
Love
Erica
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Erica P-G
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Post by Erica P-G »

Lilia....I definitely feel in the dark when it comes to MC...it's hard not reverting to childhood and letting it be someone else that does something to help you. It's hard being the adult, when all my mind wants is to be held and sympathized with. Told everything will be ok, hugged, that feeling of warmth from the heart that seemed to heal anything. That's what I wish for from my family....but that for me is a thing of the past, I miss it.

I hope I don't sound to sappy....what I want and what I'm getting are two different things.
Hugs
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Post by Gabes-Apg »

Big Big Hugs Erica
:bigbighug:

life with MC is a tough tough gig - and harder for those of us that put on the brave face with friends and family and hide how vulnerable we are!

The other aspect is that we have 2000 plus years of tribal acceptance in our DNA. Being accepted, being part of a tribe is part of survival.
Being shunned, or alienated has impact on our wellbeing.

in my 6 year MC journey, (well actually my 8-9 years of having 'weird health issues' ) what i have learnt is that there some people albeit they might be family, long term friends, work colleagues, etc that despite the best explanations I could come up with, they still 'didnt get it'
this is where you put your energies into the things (and people) that are worth it, and some situations and people you just have to shrug and let it go.. cie la vie.....dont waste precious energy on things that wont change/ or improve...

MC and the lifestyle changes i made, has changed relationships with family and friends, and there are quite a few friends that dropped away as my revised lifestyle plan didnt align - just like acceptance of life with MC involves anger, grief, etc we go through these stages with relationships. What it did show me were the people that were willing to learn /embrace / accept what I was doing.
The people that take the time and care to help me, prepare a safe meal for me. some friends even text me or email me when they see a new product that might be 'gabe safe'. One year a friend got me a gift voucher for my local butcher where i was buying my grass fed meat (as they couldnt buy me chocolates or wine).

since moving back to family and there are regular gatherings, (xmas, lots of birthday parties, all day car shows etc) I am quite content these days to take my own safe meal, warm it up when others are eating. If I have the energy I will make Gabe Safe treat to share with others. Majority of the time, like Tex, the smell of other food doesn't bother me so much - it probably took me about 2 years or so to get to this stage... I suppose it is like another milestone of life with MC - socialising is not as stressful!

hang in there - those of us that do get it are here!
always ready with a listening ear and the sympathetic 'i get it' hug...

:hug:
Gabes Ryan

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Post by Adelaide »

I have had very hurtful comments from a relative and I have missed out on doing things, and felt isolated because of MC. It is all horrible but we cannot do anything about it. The only choice we have is in how we choose to react. We can let it get on top of us or we can rise above and choose the higher road. Most of the time (not always) people mean well but they are just unaware of what to do or say to help.

Big hugs to you all 💜

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‘I have decided to stick with love. Hate is too great a burden to bear.’ – Martin Luther King Jr
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Post by Lilja »

Erica P-G wrote:Lilia....I definitely feel in the dark when it comes to MC...it's hard not reverting to childhood and letting it be someone else that does something to help you. It's hard being the adult, when all my mind wants is to be held and sympathized with. Told everything will be ok, hugged, that feeling of warmth from the heart that seemed to heal anything. That's what I wish for from my family....but that for me is a thing of the past, I miss it.

I hope I don't sound to sappy....what I want and what I'm getting are two different things.
Hugs
No, you don't sound sappy at all. That's what is so good with this forum, we can come with all our heart-sighs and people will understand and symphatize.

Great Easter hugs!
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Erica P-G
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Post by Erica P-G »

I absolutely LOVE the support within this group....just when I get thrown off the path I get picked back up by coming here.

The emotional work never will stop, as with anything that changes I will need to figure out what can help me the best way possible. My husband is finally getting it, he sees the changes. Ever since realizing he has a double whammy of the MTHFR genes he is noticing that what I am having to succumb to he is needing to work on some areas for himself too.

It's a tough road to hoe at time, I'm just so thankful to be able to express myself here.

Thank you everyone who has commented or may have sent me silent thoughts, they have been truly appreciated. :hug1:
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Post by tex »

Erica wrote:I'm always rehearsing the best possible way to approach things but that's just me.
That's me too. It's surprising how similar we all are. Here's something that is largely overlooked in MC, but I believe that it is real:

MC not only activates/increases our food and drug sensitivities, it also boosts our emotional sensitivities. Before my symptoms began, I never even shed a tear at the funerals of close relatives or friends. But after MC ravaged my guts, my central nervous system, and my brain, just reading a post on this forum written by a new member who has suffered from the disease for years without any help can be enough to make me all misty-eyed. There has definitely been a major shift in the threshold at which my emotions are triggered. MC seems to be capable of affecting almost anything and everything about us.

Or maybe it's just me, and I'm all wet. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by jlbattin »

No, Tex, I don't think you're all wet at all. I have noticed the same thing. I've always been somewhat sensitive but never to this extent. I feel like I can cry at the drop of a hat and that most days I wear my feelings on my sleeve! It was horrible in the middle of the worst of it all and so has gotten a little better, but I still cry LOTS more than I ever used to.
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tex
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Post by tex »

Jari,

I've mellowed a bit too over the past few years, but for a while, "cry at the drop of a hat" was right on target.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by crervin »

Love the story Tex! And hugs to you Erica! I totally understand, my husband always asks what he can do. I tell him just to hug me and tell me that I'm going to get a handle on this eventually!

Sadly, I've stopped keeping in touch with my sister-in-law, due to the fact that she doesn't understand. My kids miss their cousins, but it's just too stressful. Besides the fact of explaining my sickness for the nth time, but WD the next day from stress. I've started living for me now.
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Post by PhoenixRising »

Tex, I'm so glad you said this:
There has definitely been a major shift in the threshold at which my emotions are triggered.
I've been wondering what was wrong with me for a few months now, and was attributing it to having come off of the sertraline, and perhaps changed brain chemistry from being on it for so long and then coming off of it. I've truly wondered if I might be going a little crazy on more than a few occasions. I find that along with the crying more easily, I also tend to get angered a lot faster. I've always been easily annoyed, but able to brush it off and continue on about my business. These days, however, I find myself taking things much more personally than I used to, getting downright angry about things that maybe should only be annoying, and I find it hard to bite my tongue. Sadly, the one emotion that hasn't been more easily triggered is happiness.
I've always been somewhat sensitive but never to this extent. I feel like I can cry at the drop of a hat and that most days I wear my feelings on my sleeve!
Jari, the same exact thing is true for me too! I've always been overly sensitive and taken things too personally, and never had a poker face, but now it is so much worse. I'm considering trying meditation to help, but not sure I have a guaranteed quiet place to do it.
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Erica P-G
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Post by Erica P-G »

Thanks Martha :grin: and you are not "all wet Tex" ;-)
This topic of being emotional has substance to it....it is a rapid roller coaster and I still can't get a great grip on it for myself. I over explain myself at times, cry at pretty simple things when watching tv, and I find when I am at my most tired moment it triggers it the most and then I really can't deal with much except just go to bed and power back up again.

If the universe was listening to my pity pot pre-Easter then this would explain how my attending Easter dinner was canceled due to both parents catching a nasty cold....it was rather relieving for me...I enjoyed Easter Sunday so much just "being" in the moment :wink: I'm sorry a virus hit my family...I never wish illness on anyone.

I tried my hand eating a little beef (home grown, very lean) no reaction....but I'm sure by the second day and helping number 2 of beef I progressed with the beginnings of an achy head. Which has lasted for two days now, and I had to take an Imitrex to get it to subside properly. Well it was my #3 on the Enterolab report...good to know I don't have an immediate reaction and it only leads to a head ache and not WD. That definitely is a Sometimes food if there are no other options. I also learned that Just Mayo and a little bit of Real Ketchup made with sugar only mixed together makes for a great fry sauce :grin: It could practically pass for Thousand Island dressing...

Ok, I'm beginning to ramble
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Erica P-G
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Post by Erica P-G »

Well it appears I need to keep my magnesium intake on the higher end whether I like it or not....it seems like I have had to take an Imitrex every other week for a day, and these last two days have been hard and I barely took my pill in time because I had to sleep most the day for my body to be painless, not pain free totally. UGH!! I missed work too...so this last month was a test pretty much to see where my body is behaving the best and it isn't ready to taper back the Magnesium like I thought I might need to.

MC is all about testing theories...some work some don't, and then they change in mid stream which is frustrating. :sigh:

On a lighter note I have a STAR under my profile name, I've been with this great family for a year now! :grin:
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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