DrTonya is offline DrTonya Post #1  March 22,2010, 5:51pm
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OK, this is going to be a tough post for me to write (and likely a little long) but I ask you all to just bear with me.

As some of you may have read on other posts of mine, I have a host of serious chronic medical problems. My main issue is that I have a form of muscular dystrophy which is a neurological disorder that breaks down my muscles and causes them to atrophy. Basically, the more I use my muscles the weaker I get. I was born this way and this is a progressive, degenerative disease. Over the past year or so, it has attacked my heart muscle leading to cardiomyopathy (what Barbara Hershey's character died from in the movie Beaches) and has also affected the muscles that control my breathing - so much so that I need to wear a CPAP to bed each night. I found out I tend to stop breathing in my sleep - the CPAP keeps the airway open.

While I am still mobile, I do use a walker (and probably should use it more often than I do). I have been fitted for a power wheelchair by MDA because it looks like my body may not want to continue being upright much longer. I am in pain every single day and for now I am on muscle relaxers only for pain - I refuse to take narcotics. I have never ever been "healthy" or not in pain and do not understand (or grasp) what it means to be "healthy. Yes, I am serious.

While my docs want me to go on disability (they have been hounding me the last year or so), I refuse. I have a job I LOVE and that is what keeps me going. For 12 hours per day (yes, I usually work between 10-12 hrs a day) I get to focus on everyone else's issues and I feel like I'm making a tiny difference in this world. Definitely keeps me going. No time for a pity party even if I wanted to have one (which I do not, and please do not mistake this post for being one - not my intention at all)!

Why on earth am I telling you all this? I hope that will be made clear as I go on. In the spirit of being honest with anyone I date, I do share that I have a neuromuscular disorder prior to meeting. This info is NOT in my profile because I do not define myself by my illness. However, it is pretty obvious once you meet me that something is up. I look like a walking TeleTubby . The atrophy just becomes more and more apparent. So, I feel potential dates deserve the "Reader's Digest" version of events (at this point maybe you all wish I went that route for this post....). I say that I have a disorder that weakens my muscles instead of builds them; that I tire easily and have chronic fatigue; and that participation in most physical activities need to be limited due to both my weakness, pain, and lack of balance. If there are no questions I drop it at that point.

My last LTR ended approximately one year ago. We dated for 2 years. He was and continues to be a phenomenal guy. He broke up with me when he saw my deterioration for one simply reason. He said to me "I do not want to watch you die."

Yes, I am terminally ill (this is the part I've been "omitting" in my other posts). I maybe have 12-18 months left. I have had this verified by 3 different physicians and have had some time to wrap my mind around it and go thru the stages of grief. I am 33 years old and will not make it to 35. My body has already stopped producing certain proteins. I feel it shutting down though wish my prognosis was not true.

Which leads me (finally) to my question that I want to throw out there for you all to tackle - at this point in my life, given my prognosis, is it selfish for me to date? Although I live on my own, have a great career, drive, etc. is it fair to someone else, knowing time is ticking, to get involved with me? My family will not acknowledge my prognosis (they remain in denial) and my friends, while I love them dearly, tend to tell me what I want to hear lately. So, all you objective eHA people out there...what say you?

Why would I want to date? Again, I want to meet people, learn from others, take my mind off of me and my body's constant betrayal. I know I will not get married or have children. I am just asking if it is selfish for me to put these potential guys in a really tough jam once they realize how seriously ill I am.

For those who doubt, this really is a serious question that I have been mulling over. This post is 100% from the bottom of my heart true and honest. I am open to all answers; all I ask is that you be respectful and realize how terribly difficult it was for me to write this and put it all "out there" for total strangers to see. Thanks .
 
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superbeetle is offline superbeetle Post #2  March 22,2010, 6:08pm
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Wow, I am awed at your bravery. I don't think it is selfish for you to date. As long as you're honest about your illness, it's up to the other person to make that decision. Many will find it too hard, but others may surprise you.

Thank you for putting all the other threads here into perspective.
 
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LizziePooh is offline LizziePooh Post #3  March 22,2010, 6:13pm

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Wow, DrTonya. This was a hard post to read; I can't imagine how hard it must be to have to write it. Your dignity and grace in light of your circumstances is very inspiring.

***

I don't see how it could be considered selfish since you are upfront and honest about your condition. I would think it only could be considered selfish if you took away their right to an informed decision and you do not do that. It is their decision to make and just presenting someone with that decision is not selfish. At least I don't think so.
 
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DrTonya is offline DrTonya Post #4  March 22,2010, 6:14pm
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Thanks for your reply and kind words, superbeetle. However I do not think of myself as brave - just living my life. Remember, I do not know any different .

To follow-up then - is my "blurb" that I describe above sufficient in the beginning of dating? When, if ever, do I reveal my prognosis? Am I being misleading in any way?

So hard to be objective about myself in this situation! Thanks.
 
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DrTonya is offline DrTonya Post #5  March 22,2010, 6:18pm
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Thanks Lizzie. It is what it is...no more, no less.
 
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yoga_gal is offline yoga_gal Post #6  March 22,2010, 6:24pm
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Dr. Tonya, I admire your attitude and spirit as well as grace.

Like the others I don't think you are selfish as long as you are honest. I think at the beginning stages of dating (first meet and first few dates) what you said above is appropriate. I think the prognosis should come up at some point but maybe not til you see that there is potential except for one question I have.

Do you or your dates discuss what you are looking for in a relationship long term? I am sorry to be so blunt but when I am talking with an EH match that question occasionally comes up in regards to marriage etc. I am just wondering how you handle that or intend to when or if that question should arise?
Last edited by yoga_gal; March 22,2010 at 6:27pm.
 
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Iconography is offline Iconography Post #7  March 22,2010, 6:24pm
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Oh, my... I can scarcely see the screen for the tears in my eyes, Tonya, so I am going to make my answer brief:

None of us, ordinarily, can really know when our end is. Loss is a risk we all could face at any moment. So yes, date. Selfish or not, date. It's an important part of life, and a joyful one, and you owe it to yourself to live--joyfully--while you can.
 
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DrTonya is offline DrTonya Post #8  March 22,2010, 6:33pm
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yoga_gal wrote :
Do you or your dates discuss what you are looking for in a relationship long term? I am sorry to be so blunt but when I am talking with an EH match that question occasionally comes up in regards to marriage etc. I am just wondering how you handle that or intend to when or if that question should arise?
See, this is where it gets so murky and tricky. I want a LTR. I also want to get married. However, the marriage one is likely to never happen and I have accepted that. So I answer that I would like to have an LTR because that is honest.

I have been waiting to disclose the prognosis. Luckily, I have not made it past date 1 with any of the guys I've met from eH yet so I have not had to brave those waters. With my previous LTR, he found out the same day I did. Part of me is glad he did. He continues to check on me if he hasn't heard from me in a week or so - just to be sure I'm ok. Like I said, phenomenal guy. I have been lucky.
 
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DrTonya is offline DrTonya Post #9  March 22,2010, 6:36pm
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Iconography - there's no crying in eH advice boards! Doctor's orders!

I wish I could just be selfish given the circumstances, but it is difficult. That's why I have come to you all, the wise and experienced daters out there, to guide me and show me the error of my ways.
 
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yoga_gal is offline yoga_gal Post #10  March 22,2010, 6:40pm
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DrTonya wrote :
See, this is where it gets so murky and tricky. I want a LTR. I also want to get married. However, the marriage one is likely to never happen and I have accepted that. So I answer that I would like to have an LTR because that is honest.

I have been waiting to disclose the prognosis. Luckily, I have not made it past date 1 with any of the guys I've met from eH yet so I have not had to brave those waters. With my previous LTR, he found out the same day I did. Part of me is glad he did. He continues to check on me if he hasn't heard from me in a week or so - just to be sure I'm ok. Like I said, phenomenal guy. I have been lucky.
Definitely murky and tricky, isn't it? And very easy for those of us not in your shoes to say what to do and not to do.

From the posts on the boards, particularly this one, I am going to say that you need to listen to your gut/intuition on what to say when. Just the fact that you are asking the question and how you have handled yourself thus far speaks volumes. I think you have a good heart and head and I think how you have handled it thus far seems reasonable and fair to me. You are striving to be honest and really are hiding nothing.

Keep us posted on how things go. I have already enjoyed hearing about your last date. Here's hoping the next ones are more fun.
 
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