Please help me help her, Warning: wall of text

[Koerais]

Dear fellow forum goers,

I have recently started dating this wonderful girl. We have been dating for about a week and i just found out today (the VERY hard way) that she has diabetes and epilepsy. She did not want to tell me so soon about her conditions because she was afraid that it would scare me away like it has every single one of her ex's. Basically we were watching tv i was sitting at the couch and she was cooking in the kitchen, we were just carrying on a conversation then i noticed she stopped answering me.

I turned around and saw her standing in the kitchen kinda twitching and had a serious case of deer in the headlights looking eyes. So i walked over and started massaging her shoulders asking if she was all right (at this point i still had no idea it was about to be a seizure as I've never witnessed it before.)While i was rubbing her shoulders she just started going limp and i caught her underneath the arms before she hit her head on the counter. I layed her down as gently as i could but the second she was on the floor is when she really started twitching out. at this point i have never been so scared in my life, i have never seen a seizure in person before. All i could think of doing was to get a pillow for her head and i held a washcloth with a zip lock bag of ice in it on her forehead because she was complaining about being hot once she started coming around.

I know for a fact that she drinks a lot and smokes a lot of MJ. Once she started telling me her whole story (since she could no longer hide it from me after this incident) i do not know anything medical or not but she claims that smoking MJ helps reduce her seizures frequency of occurrence. I do not feel it is my place to tell her what she can or cant drink or can or cant smoke. She is 22 and i am 24. While she is terrified that now that i know of her "disabilities" that i wont want "damaged goods" anymore. but i feel the exact opposite. Despite the physical problems she has she has still made me feel a way none of my ex's have made me feel and i feel like we just click on a deeper level. I want to learn everything i can to help her, i don't want to be just another guy she has dated who has dumped her because she is what she calls herself "damaged goods" even though i keep doing my best to convince her otherwise.

I am on this forum today because i have been researching today on both diabetes and epilepsy so that i am better prepared to keep her safe to the best of my ability. Is there anything i can do for her besides comforting her and telling her to stop telling herself that i am going to break up with her because of these conditions that are out of her and my control? i just want to know what i can do to keep my girlfriend SAFE AND HAPPY!

If you sat through this entire thing i have written here today and have any advice,or suggestions on what i can do i would greatly appreciate your input. EVERY little bit helps. Thank you everyone for your time!

~Koerais

 

[hootie]

Hi!
Welcome to the forum! I don't have much advice but I just wanted to say that you sound like an amazing, caring person and that your girlfriend is blessed to have you around!!!

I'm sure other members will answer with loads of advice for you and your girlfriend.

:hello::hi5::tup:

 

[Birdbomb]

First thing, Koerais, sit down and have a beer, you deserve it! Actually you deserve an award. You stayed. The longer you hang with us, the more you will understand how important that simple act is to someone with chronic conditions.

Seeing your first seizure is frightening, the body does awful things to itself and there's not a damn thing you can do until it's over. (except put in recovery position, ect) The thing to remember is that person in most cases is totally unaware. TC's are just like going under anesthesia, one second you're there talking seeing, doing stuff, and the next, ZIP, nada, nothingness, until it's all over. Then as they begin to come around, it's fear and confusion for that person. It may take a few minutes or a few hours to days to get back to "normal"

Smoking pot does help, but for some it makes it worse. Is she on medication and is her weed prescribed ? Is her neuro aware? The drinking really isn't such a good idea especially with the diabetics. She has no idea what kind of damage she's doing to herself. It will show up later on in life and may even take her life.

Don't nag her and don't smother her, I'm sure she had plenty of that as a kid. Keeping the communication lines open is imperative! I can understand her reluctance in not saying anything sooner, but now the cat's out of the bag, she needs to realize what a gem you are, you passed the most difficult test, you stayed, you didn't leave.

You're not the only one who can write a wall of text! HA!

 

[Koerais]

Birdbomb,

Yes she is on medications but i have no idea what the names for them are right off the back of my head. No the weed is not prescribed, i have no idea if her neurologist knows anything about it. i have only been dating her for a week or so and i just found out about it recently.

~Koerais

 

[Nakamova]

Hi Koerais, welcome!

You sounds like a great person, and so far you've been doing everything right. Coming here for information is a great way to be able to help your girlfriend. Many people do find that MJ helps with their seizure control, but there can be problems with long-term use. Alcohol tends to be bad for folks with seizure disorders (and diabetes), but everyone has different thresholds (for instance, I'm okay with a cocktail or two).

If you both feel comfortable, it's worth having a deep talk about her health issues. Find out about her seizure history -- what kinds she has, how often, how she feels afterwards, how you can help. It would be good for you to know about her meds, what happens if she misses a dose, if there are any side effects, etc. As folks have mentioned above, there's no need to come on too strong. Being solid and supportive and empathetic are great gifts to offer her, and may be all she needs.

Best,
Nakamova

 

[stephk]

hello!

The fact that you are trying to find out everything that you can says a lot about what type of person you are. It may be hard, but don't treat her any different. . So I do def agree with Birdbomb, in the part of... dont smother her.

Maybe you could direct her to this sight. She may be open to it. Hang around and learn a bit.

 

[Koerais]

Hi Koerais, welcome!

You sounds like a great person, and so far you've been doing everything right. Coming here for information is a great way to be able to help your girlfriend. Many people do find that MJ helps with their seizure control, but there can be problems with long-term use. Alcohol tends to be bad for folks with seizure disorders (and diabetes), but everyone has different thresholds (for instance, I'm okay with a cocktail or two).

If you both feel comfortable, it's worth having a deep talk about her health issues. Find out about her seizure history -- what kinds she has, how often, how she feels afterwards, how you can help. It would be good for you to know about her meds, what happens if she misses a dose, if there are any side effects, etc. As folks have mentioned above, there's no need to come on too strong. Being solid and supportive and empathetic are great gifts to offer her, and may be all she needs.

Best,
Nakamova

Nakamova,

All i know about her medical history is she told me that she has been known to get hospitalised once sometimes twice a month for a week at a time due to her conditions. i personally think she may need more professional help than i could ever possibly give her, she woke me up at 3 am this morning with a cell phone pic of her arm cut to shreds. then when i called her to comfort her all she could say over and over is "im tired of being broken please make it stop" i think i may be in way over my head but i will still do everything i can. That is why i am on this forum in the first place.

 

[Cint]

Hi Koerais and welcome to the forum,

I'm impressed with your desire to want to find as much info as you can about seizures. Many people who witness a T/C seizure for the first time are scared and don't want to know any more about it.

I also have seizures and Type 1 diabetes. I've had SP, CP, and TC seizures and know what they feel like and also what they (or I ) look like when they happen. Not a pretty sight. And sometimes headaches and depression hang on for days after the TC seizure for me, so depression could be part of the reason she is drinking. And as others have said, alcohol is not a good idea for anyone with diabetes. Sometimes alcohol can cause Hypoglycemia, or low blood sugar, in people with diabetes, so she needs to be very careful with the alcohol. No comment on the MJ.

From http://www.diabetes.org/

Alcohol can cause hypoglycemia shortly after drinking and for 8-12 hours after drinking. So, if you want to drink alcohol, check your blood glucose before you drink and eat either before or while you drink. You should also check your blood glucose before you go to bed to make sure it is at a safe level -- between 100 and 140 mg/dL. If your blood glucose is low, eat something to raise it.

The symptoms of too much alcohol and hypoglycemia can be similar — sleepiness, dizziness, and disorientation. You do not want anyone to confuse hypoglycemia for drunkenness, because they might not give you the proper assistance and treatment. The best way to get the help you need if you are hypoglycemic is to always wear an I.D. that states "I have diabetes."

Do you know if she is seeing an endocrinologist as well as a neurologist?
Just continue to encourage her and if you want to drink or smoke MJ, please don't enable her to do so. It could only make her health worse.

 

[Endless]

Koerais,

Welcome to CWE! I'm very glad you found us in here. There are lots of significant others who belong, so you will be in good company.

First off, what a good man you are. Staying by her side during this is huge for her. Someone as loyal and caring as you, in the face of a disability, is hard to find.

Can I ask, how did her arm get shredded up? Does she know? Did she say what kinds of seizures she has?

I wanted to share that Alcohol is a major seizure trigger for me, as it is for many people. On the very rare (3x) occasions I have had a tiny (3oz) glass of wine, even that triggered a seizure for me. Strange, though, it was about 5-8 hours later. My theory is that it interferes with my seizure meds, which could be right or wrong.

There isn't much you can do about her drinking at this point, because if she is drinking too much, nagging about her drinking won't decrease it, it'll just push her further into denial.

Does she keep a seizure journal? Maybe she isn't even aware that drinking makes seizures worse. If she tracks her seizures, when she drinks, sleeps, other triggers, her meds, etc., she may see patterns emerge.

I'm just so sorry her seizures aren't under control. Maybe some day, as you grow closer, she'll let you come along to her appointment with her neurologist. It helps to have someone there to help ask questions, provide information to the doc, and remember what he says.

Hang in there, okay?

 

[Koerais]

Koerais,

Welcome to CWE! I'm very glad you found us in here. There are lots of significant others who belong, so you will be in good company.

First off, what a good man you are. Staying by her side during this is huge for her. Someone as loyal and caring as you, in the face of a disability, is hard to find.

Can I ask, how did her arm get shredded up? Does she know? Did she say what kinds of seizures she has?

I wanted to share that Alcohol is a major seizure trigger for me, as it is for many people. On the very rare (3x) occasions I have had a tiny (3oz) glass of wine, even that triggered a seizure for me. Strange, though, it was about 5-8 hours later. My theory is that it interferes with my seizure meds, which could be right or wrong.

There isn't much you can do about her drinking at this point, because if she is drinking too much, nagging about her drinking won't decrease it, it'll just push her further into denial.

Does she keep a seizure journal? Maybe she isn't even aware that drinking makes seizures worse. If she tracks her seizures, when she drinks, sleeps, other triggers, her meds, etc., she may see patterns emerge.

I'm just so sorry her seizures aren't under control. Maybe some day, as you grow closer, she'll let you come along to her appointment with her neurologist. It helps to have someone there to help ask questions, provide information to the doc, and remember what he says.

Hang in there, okay?

her arm was shredded up because she had been drinking and she was depressed and started cutting herself. i had to convince her over the phone to put the razor down. i tried to go visit her but she didn't want me to see her in her current state. She just wanted me to try to comfort her. i eventually convinced her to put the razor down (and the alcohol) and go to bed.

 

[Endless]

Oh... I am so, so sorry.

IMHO.... She needs a second kind of doctor to get completely well. A psychiatrist can prescribe medicine to help her deal with the emotional issues. They could be playing into her seizures as well. I'm so sorry she (and you) are going through this.

Big hugs to you. Life can't be easy right now.

 

[Koerais]

Endless,

The biggest problem i am seeming to have is any time i try to bring up any sort of help (docters etc. etc. she just pushes me away telling me she's been dealing with this her entire life. I do believe she is deep in denial but i just dont know how to convince her otherwise w/o sounding overbearing or "nagging" i dont want to smother her but i just dont know how to help her.

~Koerais

 

[Endless]

Maybe you can't help her. A person has to want help before any can be given. Before that time comes there is disease. Untreated, possibly progressing disease. Same with seizures and personality disorders, same with alcoholism, same with any pysical disease.

In the meantime, how are you taking care of YOU? Someone who is continually in crisis can be really draining, and you need a way to refuel. Also sounds like a lot of drama, which can make life extremely chaotic. Are you taking time to find calm and peace in your life?

Please do take care of yourself.

 

[Birdbomb]

Maybe you can't help her. A person has to want help before any can be given. Before that time comes there is disease. Untreated, possibly progressing disease. Same with seizures and personality disorders, same with alcoholism, same with any pysical disease.

In the meantime, how are you taking care of YOU? Someone who is continually in crisis can be really draining, and you need a way to refuel. Also sounds like a lot of drama, which can make life extremely chaotic. Are you taking time to find calm and peace in your life?

Please do take care of yourself.

No matter how much you may care about or love someone, you cannot help them if they don't want help. Sorry, dude, it's a hard fact of life. This girl has way too many issues and NEEDS a lot of lot.

 

[elizzza811]

I don't want to be the one here to burst your bubble of good replies, but remember, you just "recently" started dating her. I'm sure her ex's swore she was wonderful (in the beginning) and that they'd be there for her (when it was still new and exciting).

The true test is if you STILL feel this way and behave this way towards her (caring and supportive) 10 or 20 years from now...so make that your goal.

But then again, I think your girlfriend and I must be related, because I feel like 'damaged goods' myself...SEVERE OCD, chronic Lyme, and now seizures. I'm lucky though to have a guy similar to you right now, very caring, willing to spend our one day a week driving me around (since I can't drive myself now), but I'm still always skeptical of you boys!...

 

[mockinbird]

Goodness, this is a hard one and I am certainly not an authority on this subject so take it as one persons opinion.

First off, I commend you for your efforts. People like you don't come along often but this young lady obviously has some deep seated emotional problems if she is cutting AND sending you the pictures. If you haven't been in the relationship very long, it might be in your best interest to just let this one go dear. I learned a long time ago, you can't save the world. And you shouldn't have to sacarafice your own well being and sanity for the sake of someone who doesn't value themselves. Life is too short to start it out with such complications if you don't have too. Weigh all of your options and think long and hard about if this is what you want your life to be like. According to what you have told us here, her problems aren't going away any time soon and if you aren't in it for the long haul, then don't. No one will fault you for looking out for your own best interest.