How do the parents get better?

[FallingApart]

Hello again,

 

I am having a very bad afternoon and feeling like there is no end in sight for this disease. I feel like we will be working towards fixing it and fighting it forever with little to show for the fight. There is no need to go in to the details of why I have had a bad day, I'm sure we have all been there before.

 

But, can anyone help share tips on how to stay positive through all of this? I don't want to be this downbeat person. I want to be realistic about our circumstances, but I would like to remain positive and hopeful throughout everything. I am having such a hard time imagining a life wher this isn't my only priority and where I don't look at people who have a "normal" life like they are aliens. I'm assuming you can relate and am wondering how you all survive the day to day. I am a mom to a 2 and 3 year old and am so beaten down. I'm already on an SSRI. I exercise regularly. That only happens because I can take my girls in the stroller to exercise class. I never eat, drink, or sleep- well, you know what I mean. Obviously those are areas I could improve upon.

 

Are we all walking around totally depressed or am I at the bottom of the barrell?

[Guest asaxon]

Hello again,

 

I am having a very bad afternoon and feeling like there is no end in sight for this disease. I feel like we will be working towards fixing it and fighting it forever with little to show for the fight. There is no need to go in to the details of why I have had a bad day, I'm sure we have all been there before.

 

But, can anyone help share tips on how to stay positive through all of this? I don't want to be this downbeat person. I want to be realistic about our circumstances, but I would like to remain positive and hopeful throughout everything. I am having such a hard time imagining a life wher this isn't my only priority and where I don't look at people who have a "normal" life like they are aliens. I'm assuming you can relate and am wondering how you all survive the day to day. I am a mom to a 2 and 3 year old and am so beaten down. I'm already on an SSRI. I exercise regularly. That only happens because I can take my girls in the stroller to exercise class. I never eat, drink, or sleep- well, you know what I mean. Obviously those are areas I could improve upon.

 

Are we all walking around totally depressed or am I at the bottom of the barrell?

 

Where are you currently in your diagnosis and treatment of PANDAS?

[thereishope]

Well, I am the stay at home mom of a 3,5,8 year olds. I have a husband that means well, but, I am sorry to say, "doesn't fully get it". The majority of problems fallen me. I have done the research. I have made the calls. I have been the one to hold him down when he's screaming and hitting.I was the one who spoon fed him when he wouldn't eat. I was the one who helped him overcome so many of his OCD tendencies. I have to teach my husband what to do. I wish someone would just "tell" me and give ME a list of instructions. So I always feel beaten down. I have not gotten a break since this began in Sept 08. I can't even think of someone babysitting my son in case a problem arrises.

 

Know it's normal to feel this way. Even though we are doing really well right now, I feel I am psychologically scarred from what I have experienced. I find myself, at times, being able to cry on demand.

 

However, I have seen the light at the end of the tunnel. Granted, I have been slammed back to end of it one too many times, but I know I will get my son back. There isn't another option. You need to step back and see the strength you have. If you have experienced a blessed life until now, this is your wake up call and it may be harder. Unfortunately, I have had to overcome many struggles throughout life and I know in those occurrences in time you find a way to go on. It may be silly, but I have seen that in life, struggles come in waves. I will experience something awful like a parnet dying, then have calm for a couple years and then something else tragic happens. So, I know I will get a break at some point.

 

It's okay to feel like you've had a loss, but don't beat yorself up by looking at old pics and remembering what it use to be like either. You need to have hope. You need to have that mentally that you WILL overcome this.

 

Where do you live? If anyone lives around you, maybe they can visit you and give you a break. You will find comfort in having an understanding person being around your kids. Knowing they will not judge and will understand.

[ShaesMom]

Why didn't you call me yesterday??????? I'm here for support!

[FallingApart]

THanks for your responses.

 

We were supposed to do the IVIG yesterday but it didn't happen. Now, we are waiting for next week. That is why I had such a bad day yesterday.

 

Vickie, I also feel psychologically scarred. Also, like you, life has not been easy. We have had some pretty major health problems over the last 5 years. Prior to that, though, it was pretty much easy living. What I would most like, though, is just to accept this for what it is and move on in a positive way. Is anyone doing this successfully?

 

I live in Seattle, WA if anyone else is local.

 

Take care!

[thereishope]

THanks for your responses.

 

We were supposed to do the IVIG yesterday but it didn't happen. Now, we are waiting for next week. That is why I had such a bad day yesterday.

 

Vickie, I also feel psychologically scarred. Also, like you, life has not been easy. We have had some pretty major health problems over the last 5 years. Prior to that, though, it was pretty much easy living. What I would most like, though, is just to accept this for what it is and move on in a positive way. Is anyone doing this successfully?

 

I live in Seattle, WA if anyone else is local.

 

Take care!

 

 

 

That's the thing,when you've experienced so much stuff in life, when another problem arrises, you have two responses...

 

1. "God, are you serious? Haven't I been through enough?" I feel bad getting angered at God, and I know I should never do that, But I also know He understands why. But that comes and goes rather quickly. I don't want people jumping on me for admitting this one.

 

2. You draw on that strength you were forced to previously acquire. That's a good thing.

 

I think in the scheme of things, I have come to accept it. I think sometimes I avoid putting myself in situations because I don't want to be disappointed. That's a lengthy one to explain.But I have also seen improvement and right now I'm in an acceptable point in his third recovery. So that is why I am looking at the future with a smile. But ask me that same question again IF he gets sick again. I always say IF, and I know I will have a totally different answer.

 

I live in Cincinnati, so you're a bit of a drive for me:) But if anyone is in the area and you just need a break, let me know. Let I said in my previous post, I think we would all feel better knowing we're levaing our kids w/ someone who understands what's going on and if a problem arises, we wouldn't be shellshocked like a teen babysitter.Soemtimes it's also just good knowing that option is there, even if you never take advantage of it.

[michele]

I am right here with you and for you. I feel I have taken all I can also. I am at an all time low point. I am frustrated with his behaviors and I am losing my patience with everyone in my family. I don't even care to speak to friends at this point. Nobody but those of us here get what desperation we are living with an unstable child. I was so embarrased over his behaviors in DC. The fits over everything, even throwing his shoe into the wishing pond at the Veterans memorial. Running through the lobby, kicking me and not listening. He was so mean and hitting us. I lost it and yanked him and hit him a few times hard and in front of people. I know my whole family is affected by his behaviors. All of us seem disfunctional now and on edge. I don't know how to get over these feelings either. Hopefully the steroids will work and we will see progress because we can't continue down this path. It is just too much stress and the fun of being together is gone. I have gained weight because I am depressed over my life and have no time to exercise and crave sweets. How do you get back to being happy and normal?

 

Hello again,

 

I am having a very bad afternoon and feeling like there is no end in sight for this disease. I feel like we will be working towards fixing it and fighting it forever with little to show for the fight. There is no need to go in to the details of why I have had a bad day, I'm sure we have all been there before.

 

But, can anyone help share tips on how to stay positive through all of this? I don't want to be this downbeat person. I want to be realistic about our circumstances, but I would like to remain positive and hopeful throughout everything. I am having such a hard time imagining a life wher this isn't my only priority and where I don't look at people who have a "normal" life like they are aliens. I'm assuming you can relate and am wondering how you all survive the day to day. I am a mom to a 2 and 3 year old and am so beaten down. I'm already on an SSRI. I exercise regularly. That only happens because I can take my girls in the stroller to exercise class. I never eat, drink, or sleep- well, you know what I mean. Obviously those are areas I could improve upon.

 

Are we all walking around totally depressed or am I at the bottom of the barrell?

[FallingApart]

Glad to hear I am not alone. Your story of the shoe throwing sounds exactly like something my dd would do. SO frustrating!!! I agree that this can't go on.

 

Are we all just walking around down in the dumps or is anyone managing this in a decent way?

[ShaesMom]

We are all managing this the best way we know how to. Are we making mistakes-absolutely! But we are also doing some things right and we are showing are children that we will fight for them no matter what the obstacle. We are breaking down doors and opening minds to this disease so that the next set of parents doesn't have to fight so hard. We aren't giving up on our children just because someone with a degree says "your child is mentally ill" and throws some drugs at us.

 

This journey has been heartbreaking and not a path I would have chosen. A close friend lost a 23 month old nephew last week in an accidental drowning and the half sister who was babysitting is currently locked up in a padded room because she tried to commit suicide. No matter how difficult this gets--my whole family is still here with me and that is what matters.

 

As you can tell, today is a good day at my house! Last week, not so much. LOL

[ShaesMom]

Michele,

 

Too bad you live so far away--I could use a partner in crime to help me eat my daily baking creations. My husband always gives me a little side glance and I just look and him and say"It's no different than you having a beer after work every day!" This makes me feel less quilty about my daily sugar consumption!!