Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Ive been reading this discussion board for a couple of months now and decided today to join. I guess it is part of my way of working through my denial. Let me start off by saying that you all have been extremely helpful and didnt even know it by your candid words and discussions among the group.
Quick version of my story. Went in for an eye exam in late 2008, complained about a couple of headaches and blurred vision and just thought I needed a new prescription. Ended up with a condition called papilledema optic disc swelling of the eye that is caused by increased intracranial pressure which they though could have been caused by acne medicine. Long story short, referred to a Neurologist, MRI done saw what looked like a couple of light spots, spinal tap slight abnormality and blood tests done monitored with follow-up MRI. No real or strong symptoms. So diagnosis stumbled upon, more clinical based on MRIs. Neurologist has suggested starting treatment; I have been putting it off because I really didnt have strong symptoms (slight heat sensitivity and very light tingling at times on my left side) and couldnt see dealing with side effects of medication when. Last MRI in August 2011, Neurologist saw more lesions but radiologist disagrees. With the new results Im now considering copaxone. Not really sure which way to go yet.
My issue, starting treatment makes it real, no more denial. My husband and my parents know but I have no idea how I am going to tell my children who are teenagers (13 and 15) or how they will take the news. My older son is pretty protective and every time I have a doctors appointment for anything he is drilling me mom whats wrong. My kids have no idea, but starting treatment they will know something is going on. How do you break the news? Any suggestions?
CW
Quick version of my story. Went in for an eye exam in late 2008, complained about a couple of headaches and blurred vision and just thought I needed a new prescription. Ended up with a condition called papilledema optic disc swelling of the eye that is caused by increased intracranial pressure which they though could have been caused by acne medicine. Long story short, referred to a Neurologist, MRI done saw what looked like a couple of light spots, spinal tap slight abnormality and blood tests done monitored with follow-up MRI. No real or strong symptoms. So diagnosis stumbled upon, more clinical based on MRIs. Neurologist has suggested starting treatment; I have been putting it off because I really didnt have strong symptoms (slight heat sensitivity and very light tingling at times on my left side) and couldnt see dealing with side effects of medication when. Last MRI in August 2011, Neurologist saw more lesions but radiologist disagrees. With the new results Im now considering copaxone. Not really sure which way to go yet.
My issue, starting treatment makes it real, no more denial. My husband and my parents know but I have no idea how I am going to tell my children who are teenagers (13 and 15) or how they will take the news. My older son is pretty protective and every time I have a doctors appointment for anything he is drilling me mom whats wrong. My kids have no idea, but starting treatment they will know something is going on. How do you break the news? Any suggestions?
CW
But my belief (for my own situation, and no one elses) is that it's not just MY disease, and treating it so would be selfish. My husband and my son suffer for my MS. Oh sure, not the way I do, but tonight when they go out for "Daddy/Son" night so I can lay on the couch and try to rest, they will be suffering for my condition too because I'm not there with them, cooking them a nice home cooked meal, laughing and playing. And when I'm sick, the suffering for them gets worse, with my irritable moods, my constant fatigue and lack of energy, my regular requests for even simple things like getting a drink.
So, for me, I've always been honest about it. My son is very young but I don't hide my medicines or IVs or anything else from him. He has a right to see why I'm behaving the way I am, and hopefully forgive me for my short comings because of that understanding. And being honest about it, I can try to help them when I can by supporting their emotional suffering for my condition and letting them know that I'm sorry and I'm there for them too and we all get through it together.
Best of luck to you in your unique situation, it's always a tight rope to walk!!