|
I am a private person and generally keep my feelings to myself, but this time I really needed an outlet.
On Sunday evening, my girlfriend developed double vision (Diplopia) while on the computer. Initially I thought she was just tired, but after Googling this condition, we decided to go to the ER.
She is from China and was studying in an American university when we first met in school. We started our relationship when I was a senior and she was a sophomore. I met her when helping her fix her internet connection as a student tech specialist. We've been together for four years now, and she is currently living with me as we both work in the city.
While in the hospital, I was worried that she had an internal hemorrhage in her brain or has the neurological disorder MS(Multiple Sclerosis). After the CT/MRI scans, they ruled them out. The eye exam also ruled out any direct eye damage, so the only things left are blood clots in small vessels (unlikely as CT/MRI came back clean, but they are running more exams), and MG(Myasthenia Gravis), which is a neuro-muscular disorder that results in the dysfunction of muscle tissues starting from the eyes. It could eventually move down to the whole body, making the person extremely tired and difficult to move/perform daily tasks. This disorder has no cure, but can be managed with a combination of steroids and other drugs with pretty terrible side effects such as Osteoporosis, and the symptoms such as trouble swallowing, double vision, and slurred speech may never go away. She is only 23.
We are still waiting for the blood works to confirm this diagnosis, but since then her left eyelid started to droop - a classic symptom of MG. I am so devastated that I feel like crying my eyes out every single second when I am awake. Since her family and relatives are all in China, I am her only emergency contact, and remained with her for over 20 hours since she checked in.
I have no idea how to prevent myself from feeling sad and depressed in front of her, and just this evening she sensed it and started tearing up, telling me to go home and get some rest. As soon as I walked out of the room, tears dripped down my eyes uncontrollably in front of the hospital staff. I couldn't remember the last time I cried like this, probably over 10 years ago. I came home only to find the tasty garlic bread she baked for me in the fridge, and an half-read article lying on her desk. For countless times I wished it was me who had the disease and not her, so that she would not suffer. Seeing someone I love suffer felt so much worse than having the actual disease myself. Maybe wanting to switch places makes me a selfish person, but the burden of watching her being handed a sentence like this is simply too much to bear.
For the four years I've known her and loved her, she's been nothing but a wonderful person. She is beautiful, intelligent, and honest. She works really hard both in school and at work, and is very eager to learn from others in order to improve herself. She is extremely nice to people around her, and always does the right thing by putting her self interest last. Given the awkward and reserved person that I am, I have never praised her on any of her excellent qualities, but rather teased her occasional immaturity and mishaps frequently for a good laugh. I've thought about asking her to marry me for a very long time, and tossed the idea around as semi-jokes in front of her, to which she always replied that it's a bit early.
She loves to exercise and did a pretty long run just recently in the city. It would break my heart to learn that she may never be able to do that again. I feel so powerless in the situation, and am currently regretting all the times I mistreated her by yelling at her over silly reasons, making her sad and cry. She would always forgive me within a few hours, which makes me feel so small as a human being. It is at this particular moment that I realized that I do not want to live my life without her, and that I would give almost anything to see her not suffer, whether it is a part of my body/organs, or all my bank savings. I don't even care if she still wants to be with me, as long as she lives a happy, healthy life, I would be able to find a balance over time.
I realize that I am not as strong as a guy needs to be when it comes to these matters, but I need to be stronger and optimistic not only in front of her, but also when communicating with her parents and my own family on the matter. I do not know what the consequences are going to be with this sudden development in our lives, the most likely scenario would be that her parents would move her back to China to be properly cared for by her immediate family.
When I started working as a professional, I honestly thought I have matured to a stage to handle most of what life can throw at me, but now I realize just how immature and inexperienced I am. I cannot turn to family for support because it will just bring them more sorrow and worry as they do not live close to me.
I am lost, confused, and deeply saddened. I am writing this to remind myself exactly how I feel today, to remind myself to be a bigger, better, and stronger person, and to remind myself what it feels like to truly love someone to the point of desperation when there is nothing you can do to remedy a grave situation.
Update: They've pretty much confirmed MG, starting her on medication (mestinon). Hopefully she gets better without having the negative side effects. If this does not work, drugs with much worse side effects will be used.
 
|
Just reading this makes me feel very sad, I can't even imagine how you must feel. For what it's worth, I wish her all the best and hope her condition can be mitigated as best as possible. Stay strong.
|
I admire your selflessness. You have something worth more than your life. Be proud of your valiance. You are nobler and stronger than many men. I will pray for her. Keep the faith whether you are religious or not. Let her read this post or read it to her. I'm sure it will make her day.
Do everything you can for her. After that, what happens, happens.
|
First of all, now is the time to be strong for her. You're doing the right things, remember how you would want to be treated if you were in her position. Prepare for the worst, but be as positive as possible. Positive energy does wonders, and negative energy has the obvious opposite effect. There's no words I can give you that are going to make you feel better, but my advice is to stay busy however you can, even if its just making plans and learning as much as you can about the illness.
Godspeed brother, you'l find a way through this.
|
You sound like a great guy who genuinely cares for her. As difficult as this may be for you to go through, just imagine how difficult it is for her. I'm not saying this to discourage you, but to remind you that she needs you to be strong and there for her. She needs comfort even more than you do right now, and while I realize that this is a nightmare for you, you've got to be the one to provide that comfort. It's not easy, but from what I've read of your post, you sound like the type of guy with the strength and heart to do it. I'm praying for her man, and I'm praying for you too.
|
For sticking with her through this, you truly sound like a good person and my heart goes out to you two. Just reading about that disease makes me scared as well. I want to cry with you and I wish I had advice, personal or medical or whatever. I'll pray for you guys too. Stay strong man and trust in some of the advice that the other TLers can give you. Being positive through this is definitely extremely important. This is just anecdotal stuff, but...well, I've seen some people survive supposedly terminal cases of cancer by just accepting it and putting a brave face on during my time there. Be strong.
|
Thank you for all your support! I am going to try get some sleep. I will do my best to be strong.
|
I also haven't slept for more than a couple of hours straight, I've been spending every waking hour that I'm not with her researching her symptoms. Watching videos of people with the disease only made it worse...
|
Rough man, I hope you get by ok. You're clearly a class act and a good guy for sticking it through. Best of luck to you both, keep us updated mang ~
|
That sounds absolutely awful... best of luck man, I hope things get better for you both soon.
|
keep the love going, its all you can do. be strong for yourself and her, but keep to your limits
best of luck buddy
|
United Kingdom16710 Posts
I cannot even begin to understand what you're going through. And even though the MG diagnosis may seem like the likely one right now, you cannot give up hope. I really hope that the blood work comes back negative, and it turns out to be something much less serious. My thoughts are with you and your beloved.
|
This is heart breaking...
|
Tell your girlfriend what you just told us about her. That will cheer her up, which will probably cheer you up, no?
I can only say that you've got a pretty decent overview of what's happening, that's something not so many people can do. It will help you through this.
You are a strong person and even if you "forget" about it for a second, don't worry, autopilot will guide you in that second.
I hope it works out for the both of you. Best of luck.
|
Woke up at 6, couldn't fall asleep anymore. I don't think I can ever read her what I wrote here without getting too emotional. Maybe when she gets better I will have a bit more courage to do so.She's been crying when I'm not with her, and it pains me so much to see her like this.
|
I'm but even less experienced and knowledgeable when it comes to life. Nor am I a really empathetic person, I can't think of anything special, inspirational or medically helpful to this situation. But what I do have to say is you have my support, even of it's only in the form of a post. Like many others before me have said, stay strong and be there for her. Best of luck to you both.
|
Was it diplopia along the vertical or horizontal axis?
|
On August 15 2012 19:58 nihoh wrote:
Was it diplopia along the vertical or horizontal axis?
Both. When she looks left, it is vertical, when she looks right, it is diagonal. This means that more than 1 nerve is involved... She cannot balance herself when walking, possibly due to the double vision. She says it feels like being drunk.
|
United States4021 Posts
I'm sorry bro. Hard to find true love like yours in the world anymore
|
I am so sorry to hear this, stay strong.
Good luck Glacierz.
|
This sucks so hard. Best of luck.
|
Life sucks, there is no other way to say it.
All you can do is stay strong. I hope you will.
Best of wishes for your gf.
|
I'm at work now. They are scheduling a Tensilon test for her this afternoon, which will either confirm or potentially rule out MG. Still terrified...
|
Best of luck, I don't know what else to say.
|
On August 15 2012 20:10 Glacierz wrote:Show nested quote +On August 15 2012 19:58 nihoh wrote:
Was it diplopia along the vertical or horizontal axis? Both. When she looks left, it is vertical, when she looks right, it is diagonal. This means that more than 1 nerve is involved... She cannot balance herself when walking, possibly due to the double vision. She says it feels like being drunk.
Sorry to hear that. =\
|
I'm so sorry for what's happening to you Glacierz. Life is unpredictable, unforgiving, and unavoidable. No matter what you do, bad things will always happen to you, you just have to be strong enough to fight the good fight, my friend. Don't give up. You're not immature. And you're not inexperienced. You were blindsided by a sickness that you couldn't have foreseen.
No amount of grief and sorrow will change that. You need to be strong; for you and your girlfriend. You'll get through this, I know you will.
I'm sad for you to hear that all this is happening. Please keep us all posted on how she's doing.
My Love and Prayers,
Jack
http://thehonestlifeblog.wordpress.com/
|
Turns out they don't have the materials needed for the test, going to rely on the blood work to confirm. I am doing my best to hold myself together by thinking positively. Appreciate the support guys!
|
I came into this thread expecting some kid to be whining about this or that, and man was I wrong. I can only feel for you and her, and hope you find something uplifting reading the responses from people you've never met.
From my own experience, extremely dark times like this often lead to even greener pastures in the future though. When there is a real bond between two people and something traumatic happens it can change things. It simply won't be possible now, but all the regrets and feelings you have pouring out will only serve your relationship with her in a deeper more meaningful way than before. Often times in life you take things for granted, and overlook whats really important. Though rarely in a beneficial way it sometimes takes something crazy happening to show you how you really feel.
I sincerely hope she's okay and there's nothing really wrong, but in the event that that isn't the case I hope it brings you and her something much better... the feeling of closeness that is nearly impossible to capture or achieve and it only happens when you truly love somebody and something crazy happens.
|
Just looked up some statistics, it's like 1 in 1-10 million chance of getting this thing. These numbers are not helping me feel better.
|
Has anything changed with her condition since she first started having symptoms?
|
dude, i know its hard to deal with stuff like that... my dad had a brain aneurysm which ended up killing him, i spent a few days in intensive care with him... it is honestly the worst thing in the world knowing someone you love is not going to be the same person or is going to be horrible disabled, myself and my sister ended up turning off the life support due to complications, considering i'm only 16 this is so heart breaking... i hope everything is okay with your gf and if you ever need to talk to some randomer on the internet who's gone through similar, you can just message me or post on teamliquid  best of luck to ya mate
Russ
|
Her condition seems stable. She did not respond to the initial drug they gave her (the one with the weakest side effects usually does not resolve Diplopia).
Russ/Bumholio,
Thank you for sharing your experience, and I am very sorry for your loss. I'm sure it took a lot of courage to be there with him until the last second. I wish I can be as brave as you, and learn to accept the outcome no matter what it may be. They did a MRI/MRV on her brain, no aneurysm or blood clot is found, so she is not in immediate danger. I guess we should count ourselves lucky since it could be a lot worse.
|
On August 16 2012 21:16 Filter wrote:
I came into this thread expecting some kid to be whining about this or that, and man was I wrong. I can only feel for you and her, and hope you find something uplifting reading the responses from people you've never met.
From my own experience, extremely dark times like this often lead to even greener pastures in the future though. When there is a real bond between two people and something traumatic happens it can change things. It simply won't be possible now, but all the regrets and feelings you have pouring out will only serve your relationship with her in a deeper more meaningful way than before. Often times in life you take things for granted, and overlook whats really important. Though rarely in a beneficial way it sometimes takes something crazy happening to show you how you really feel.
I sincerely hope she's okay and there's nothing really wrong, but in the event that that isn't the case I hope it brings you and her something much better... the feeling of closeness that is nearly impossible to capture or achieve and it only happens when you truly love somebody and something crazy happens.
I definitely get what you are saying. We should never take anything for granted, and always live life with passion and kindness. There are things I wish I never said/did, but I only realize them when someone I love is in trouble.
|
Update: They now think it is an early sign for MS since she did not respond to the drugs for MG. We are scheduling for a lumbar puncture on Monday, my heart is falling into pieces.
|
:[ Stick with it! Keep on keeping on~
|
 , this post just put all my problems in perspective. I wish you the best of luck, and I will remember this blog when I face such adversity in life.
|
I'm really sorry to hear this. I know how it feels, at least from the patient’s perspective. . I see you updated saying it might be MS so I can tell you a little about it if you want. I've been told I have MS 4 years ago and the effect it had on everyone around me and the way I see life was very powerful. But not all has been bad, you can live a good life even with MS. I’ve had a lot of time to talk to other people in this situation and research the hell out of this thing… The medication, for example, can work surprisingly well and you can go through most of your life without major complications ( the lead architect in my office has had MS for over 40 years - he’s 65 now - and he has been almost unaffected ). I’m not trying to belittle the situation, it is a serious condition but I just wanted to add some hope to what you read on the internet about it.
My story ends a bit differently though, after I thought I had MS for years, somebody finally had the inspiration to test me for all types of borellia ( this is the bacteria that causes Lyme) and found out that I actually have Lyme so… I’m sure that your doctors are competent but ask if they tested for all strings of borellia. Just saying.
I wish you both all the luck in the world.
|
United States4021 Posts
Just showed my girlfriend this story. She thinks that even though your girl is unlucky to get this disease, it's balanced out because she has such a wonderful boyfriend. Good luck and stay strong
|
United Kingdom16710 Posts
Sorry to hear it's MG (it is 100% confirmed?). I wish you and your gf the best.
|
On August 28 2012 13:07 Shady Sands wrote:
Just showed my girlfriend this story. She thinks that even though your girl is unlucky to get this disease, it's balanced out because she has such a wonderful boyfriend. Good luck and stay strong
I guess since your gf doesn't have a similar condition we can safely conclude its balanced out by you being a shithead
Will OP update?
User was warned for this post
|
|
|
|
|
|
EPT
