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Chronic illness is like thief that comes in the night. It steals from you. It robs you of your friends, your job, your self worth, self esteem, your social life and leaves you feeling that IT has all the power and you have almost no control over your life anymore. I am a spiritual person and do alot of praying. I never thought I would find myself in this situation. For the first 50 years of my life, I was very healthy and active. I had a job, a great social life, a boyfriend, and life was wonderful. Then I woke up one day with a migraine that became so bad, I went to the emergency room. After that night, my life changed forever. I recovered from the migraine, thankfully, but I began to experience atypical facial pain. Not to bore you with a long story of how the last 13 years have radically changed, but I know that living day to day with a chronic illness is not easy, especially when you don't have a great support system in place, I would love to hear from those on that are on this forum to share their experience and how you deal with something like this. Thank you for listening. :-)

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I have several chronic (and incurable) medical conditions.

 

One condition in particular means I can never be far from a bathroom. Almost every time I eat something I have to run to the bathroom to have an urgent bowel movement. It's pretty much taken dating off the table. I can't exactly excuse myself during a dinner date to disappear into the restroom for 10-15 minutes! And I can't go on a hike due to lack of bathroom facilities.

 

I do spend time with friends. They know about my bathroom issues and have been really nice about it.

 

I also have severe diet restrictions, a sun allergy and become fatigued easily. I can't fly due to severe motion sickness.

 

But I stay positive. I have great kids, great friends, a great family and despite my medical conditions I still manage to have a life. Things could be worse!

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About 25 years ago, I dated a guy who had something I had never heard of before: Chron’s disease. Today, it’s very well known, but I got a huge education about it from him. We dated for about a year, and I learned the all-too-familiar symptoms, along with his very specific dietary requirements, and his often urgent bathroom needs.

 

It had absolutely no bearing on our relationship, or on his social life, or on anything other than times he’d have to cancel dates due to extreme pain. Prior to meeting me, he had spent close to 2 years in the hospital, and years later, he had his intestines completely removed and wears a colostomy bag.

 

He is now happily married to a beautiful woman, with a great kid, and a great life.

 

My dad always said of him that he took lemons and made lemonade.

 

He didn’t “live” in his illness. He had this terrific outlook on life, this amazing spirit, tons of friends, and just has his illness as an “oh yeah, this is something I have to deal with”.

 

But I did see, very much first hand, the debilitating effects of a chronic illness, and what a toll it can take.

 

I am sorry for your illness.

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It's pretty much taken dating off the table. I can't exactly excuse myself during a dinner date to disappear into the restroom for 10-15 minutes!

 

Why?What's the problem with going to the restroom during a date?

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Why?What's the problem with going to the restroom during a date?

 

Nothing wrong with it but if you read the whole message , it says he would be there 10-15 minutes.

A first date? Another might assume he has actually flaked and left the bill.

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I have several chronic (and incurable) medical conditions.

 

One condition in particular means I can never be far from a bathroom. Almost every time I eat something I have to run to the bathroom to have an urgent bowel movement. It's pretty much taken dating off the table. I can't exactly excuse myself during a dinner date to disappear into the restroom for 10-15 minutes! And I can't go on a hike due to lack of bathroom facilities.

 

I do spend time with friends. They know about my bathroom issues and have been really nice about it.

 

I also have severe diet restrictions, a sun allergy and become fatigued easily. I can't fly due to severe motion sickness.

 

But I stay positive. I have great kids, great friends, a great family and despite my medical conditions I still manage to have a life. Things could be worse!

 

Do you mind me asking what your diagnosis is?

 

I don’t think dating is ruled out for you?

Dinner dates and hikes might be out of the question for a first or even fifth date but there are other options , movie date where no food involved? Politely decline popcorn?

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Nothing wrong with it but if you read the whole message , it says he would be there 10-15 minutes.

A first date? Another might assume he has actually flaked and left the bill.

 

There are people who do not assume and do not rush to judge people/situations.

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I hear you . I have Trigeminal Neuralgia and migraines and arthritis . Right now I am a remission from TN and I just go great gunnels cause who knows when it will return.

 

Trigeminal neuralgia is curable!

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Not always they try everything else under the sun before MVD. And MVD doesn’t always work . I am in a support group and there are thousands of people where MVD doesn’t work where there or they’ve had like five of them. And the cause of TN is not always compression.If It’s caused by an injury you’re SOL .

Trigeminal neuralgia is curable!
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Not always they try everything else under the sun before MVD. And MVD doesn’t always work . I am in a support group and there are thousands of people where MVD doesn’t work where there or they’ve had like five of them. And the cause of TN is not always compression.If It’s caused by an injury you’re SOL .

 

MVD is the first attempt which cures many. But not all.

Repeating the procedure is futile.

I suggest you switch specialist who will actually do a more invasive procedure.

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Well, my specialist is only willing to do meds until the side effects are so debilitating you can’t take it. That is what is done in countries where you don’t pay for your healthcare . Plus I am the first patient he has seen with it in 10 years . I live in a very rural part of the province and there are no specialists anywhere so you drive hundreds of miles get any “ specialist and you go on lists that are years long .

MVD is the first attempt which cures many. But not all.

Repeating the procedure is futile.

I suggest you switch specialist who will actually do a more invasive procedure.

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Well, my specialist is only willing to do meds until the side effects are so debilitating you can’t take it. That is what is done in countries where you don’t pay for your healthcare . Plus I am the first patient he has seen with it in 10 years . I live in a very rural part of the province and there are no specialists anywhere so you drive hundreds of miles get any “ specialist and you go on lists that are years long .

 

The meds you would be given are those meds that treat epilepsy.

But it doesn’t really help with TN. And the side effects of those meds are not great.

 

You are the first patient he has seen with it in 10yrs? So likely his medical treatment of it is also 10 yrs old.

 

If you don’t want to suffer this anymore, go see a Dr who is medically up to date!?

It is as I said curable.

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However, I am in a natural remission right now and don’t take meds, but I know it will return. My last remission was 6 years long and I am hoping this one is too. I am 2 years into remission. I have had it for 14 years.

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The meds you would be given are those meds that treat epilepsy.

But it doesn’t really help with TN. And the side effects of those meds are not great.

 

You are the first patient he has seen with it in 10yrs? So likely his medical treatment of it is also 10 yrs old.

 

If you don’t want to suffer this anymore, go see a Dr who is medically up to date!?

It is as I said curable.

Okay, maybe you’re not understanding how the system works here or the severe shortage of doctors. I will leave it at that . I KNOW the drugs are for epilepsy. I am not mentally deficient. They DO help with pain at least for ME. They don’t help everyone. They calm the damaged nerve enough that it doesn’t misfire.

 

Show me the literature where it says it is so easily curable.

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Okay, maybe you’re not understanding how the system works here or the severe shortage of doctors. I will leave it at that . I KNOW the drugs are for epilepsy. I am not mentally deficient. They DO help with pain at least for ME. They don’t help everyone. They calm the damaged nerve enough that it doesn’t misfire.

 

Show me the literature where it says it is so easily curable.

 

I’m saying it is curable with surgery.

It’s irrelevant what your system is or the shortage of Dr’s.

In your case you haven’t been cured because of that system and shortage. That doesn’t mean it’s not curable.

 

I’m sorry that someone else responded with physical therapy etc and not becoming drug dependant.

I do understand your pain.

TN is dubbed the suicide disease because many have ended their life because of it.

 

But unless you have had surgery to seperate the nerve touching something it shouldn’t, you can’t say it’s not curable.

Unfortunately your health system is allowing you to suffer.

It’s so wrong.

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I’m saying it is curable with surgery.

It’s irrelevant what your system is or the shortage of Dr’s.

In your case you haven’t been cured because of that system and shortage. That doesn’t mean it’s not curable.

 

I’m sorry that someone else responded with physical therapy etc and not becoming drug dependant.

I do understand your pain.

TN is dubbed the suicide disease because many have ended their life because of it.

 

But unless you have had surgery to seperate the nerve touching something it shouldn’t, you can’t say it’s not curable.

Unfortunately your health system is allowing you to suffer.

It’s so wrong.

 

It is not determined why I have it. For that I need an MRI. I would have to be sedated for that due to my extremely severe medical anxiety. It is not always caused by compression. It can be caused by dental injury , it can be caused by head injury or tumours or repeat surgery.

 

Some cases are not curable.

 

I also have very severe medical phobia and I would rather die than have brain surgery. I have it from severely traumatic medical experiences.

 

I still maintain it is not curable in every case it depends on what caused it. Surgery also comes with dangers and deficits.

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It is not determined why I have it. For that I need an MRI. I would have to be sedated for that due to my extremely severe medical anxiety. It is not always caused by compression. It can be caused by dental injury , it can be caused by head injury or tumours or repeat surgery.

 

Some cases are not curable.

 

I also have very severe medical phobia and I would rather die than have brain surgery. I have it from severely traumatic medical experiences.

 

I still maintain it is not curable in every case it depends on what caused it. Surgery also comes with dangers and deficits.

 

If you won’t find the cause then you can’t say it’s not curable.

You can be sedated to have an MRI.

 

It’s not brain surgery it’s surgery next to the trigeminal nerve.

 

If you choose to live with chronic pain , then you do.

But there is for you a choice not to. Or at least explore the possibility.

 

But you can NOT say it’s not curable.

You are choosing a medical route (proven not to be successful) over a surgical route (proven to be )

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If you won’t find the cause then you can’t say it’s not curable.

You can be sedated to have an MRI.

 

It’s not brain surgery it’s surgery next to the trigeminal nerve.

 

If you choose to live with chronic pain , then you do.

But there is for you a choice not to. Or at least explore the possibility.

 

But you can NOT say it’s not curable.

You are choosing a medical route (proven not to be successful) over a surgical route (proven to be )

I am saying it is not curable in EVERY case. But, yes it is brain surgery, the trigeminal nerve comes out of the brain stem.

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Do you mind me asking what your diagnosis is?

 

I don’t think dating is ruled out for you?

Dinner dates and hikes might be out of the question for a first or even fifth date but there are other options , movie date where no food involved? Politely decline popcorn?

 

Diverticulitis

Colitis

Thyroid Disease

High Blood Pressure

Food allergies and lactose intolerance

Severe motion sickness (cause unknown) with random spells of lightheadedness (falling in the shower, etc.)

Hypoglycemia

Arthritis (feet, knee, shoulder, wrist and hands)

 

But other than that I am healthy!

 

Dating is not ruled out. I was in a relationship during a period of a few years when I was in and out of the hospital and then had major surgery (bowel resection). I can't drink coffee or eat ice cream. I can do a stroll and I love sports so attending a sports event would work.

 

Mostly I have chosen not to date. My health is only part of the reason. The rest is lack of interest in dating. Maybe I'll change my mind later.

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