Feeling SOOOO Alone!

[saidie10]

This has been a rough few days...sorry for all the posts. I am just sitting here crying, worrying about my children. I feel at this moment that I am the only one worried about them. DH is supportive of what I think we should be doing, but at the same time he looks at me kind of like I am crazy when I tell him all the stuff I am learning. Tell me, do you feel like the only parent spending hours on end on the computer researching and reading and making phone calls? I feel like I am all consumed with this and although I would go to the ends of the earth for my boys, it would be nice if my DH was on the same trip with me. I am tired of hearing whatever you think we should do when I want to here, "let me read that...I found this out and that out..."and I want him to be as curious and knowledge seeking as I am. I have a wonderful DH who would do anything for his boys. I just want him to know and really understand more about what may be happening with them. He is stuck on thinking that if we just find them someone to put them on Antibiotics they will be cured and he doesn't understand it is not as easy as that and can and will likely be way more complicated.

 

Anyway, just needed another vent. Feeling better already.

[coco]

You are doing what I think most of us are doing. And it is the hardest thing ever. Yes, yes, yes, researching, reading, calling, days totally comsumed with this junk. I know my hubby is just as concerned and deeply troubled about all this as I am, but he simply doesn't have the time to do what I do. I, too, wish the burden of all this was not squarely on my shoulders, but I try to see my dh for the valuable listening partner and sounding board for me that he is. He also is the calm in my storm and pulls me out of this pandas stuff when I let myself get in too deep. Maybe try and look at how the way each of you handles this individually can play on each of your strengths, balance each other out a bit, and lessen the burden for your family. Be strong! We're all here for you.

[peglem]

You must be my husband's other wife!

 

My hub was exactly that way. And when I found new info or finally made sense of something, I'd share it- because I was excited about it but also because talking about it w/ somebody helps me get it solidly fixed in my brain. He didn't try to get it for a long time, mostly because he didn't see that my knowing or his knowing would get us any help for our daughter. We've been through many doctors who did nothing to help. What finally turned the tide- when we got the Cunningham results (I kind of did it behind his back- he did not want to spend the money). Seeing our daughter's results on the CamK graph, solidly in the sydenham's range, and seeing Dr. Cunningham's notes...he started asking questions. That "something tangible to hold onto" finally got through to him. Thank God I had this forum, so mostly I could answer his questions. He started going to doc appointments with us and participating...and when local specialists decided not to treat and referred us to a PANDAS specialist all the way across the country from us....he was supportive! I still do all the "leg work" as far as finding out info, but its been such a blessing to have him on the team!

[saidie10]

Thanks guys! I am so glad I found this board. I learned the value of a good support group when I was trying to get pregnant with these little boys. I spent 3 years on Fertilethoughts.com visiting and learning and making friends...sharing stories of joy and heartache. THANK GOD I found that and THANK GOD I found this.

 

Guys, I and couldn't agree with you more about the importance of both the roles DH and I play even with them being entirely different to some degree. The thing that just frustrated me the most tonight was when he said that we weren't going from doctor to doctor to doctor and I had to try and make him understand that we may not have a choice. He just doesn't understand that there are not many doctors aggressively and appropriately treating this.

 

I thought about doing the Cunningham test too and got information from someone very nice from this board today.

 

I knew you guys would help pull me up tonight. Thanks

 

You must be my husband's other wife!

 

My hub was exactly that way. And when I found new info or finally made sense of something, I'd share it- because I was excited about it but also because talking about it w/ somebody helps me get it solidly fixed in my brain. He didn't try to get it for a long time, mostly because he didn't see that my knowing or his knowing would get us any help for our daughter. We've been through many doctors who did nothing to help. What finally turned the tide- when we got the Cunningham results (I kind of did it behind his back- he did not want to spend the money). Seeing our daughter's results on the CamK graph, solidly in the sydenham's range, and seeing Dr. Cunningham's notes...he started asking questions. That "something tangible to hold onto" finally got through to him. Thank God I had this forum, so mostly I could answer his questions. He started going to doc appointments with us and participating...and when local specialists decided not to treat and referred us to a PANDAS specialist all the way across the country from us....he was supportive! I still do all the "leg work" as far as finding out info, but its been such a blessing to have him on the team!

[patty]

Sadie10,

 

I know exactly how you feel. My husband has no idea what is going on with our son nor does he care to find out, so all the burden is on me. This forum has been a God send because i can actually talk to someone who understand my concerns. It has been a very lonely road the last 4+ years, since my son started ticcing. The only good thing about my husband is that he does not complain about our medical expenses.

 

Sorry for going on. I needed to vent too!

 

Be strong and keep reading & researching on this forum. You will find answers!

 

Pat

[thereishope]

My husband is with me in terms of believing in PANDAS and such. However, I am the one that took on the learning. Then he'd ask me a question, and it just became too much for me to even explain. It's like I was way ahead of the race witing for him to still do stretches. Actually, this Pepsi thing has helped. He's more involved now and has opened up to friends "allowing" them to know what we went through. Not specfics, but that we have a child with PANDAS.

Edited May 12, 2010 by Vickie

[CandKRich]

.

Edited August 12, 2013 by CandKRich

[MomWithOCDSon]

It must be that pesky Y chromosome!

 

Like most of your experiences, my DH is supportive, and if I shove a research paper under his nose and insist that he read it before a doctor's appointment or something, he'll do it, but that's pretty much the extent of it. It reminds me of when I was pregnant and I read everything I could get my hands on and he just waited for me to pass on whatever information I thought he might need as I went along; apparently, that was my job as far as he was concerned.

 

Are your DH's also "authority prone," meaning they tend to take the word of an "authority figure" for gold, even if it doesn't set right with you? All my DH needs to hear is a doctor say X, and he's all like, "Oh yeah, that makes sense!" Even if it runs completely counter to our experience! It takes me to sit him down and point out the inconsistencies in some of the "expert advice" we've been given, or the experiential contradictions we're living through, before he'll acknowledge that maybe an "expert" doesn't know everything after all.

 

I posted this on another thread earlier this week, but it might bear repeating here, too. Dr. K., during our meeting with him last week, said, "The mom instinctively knows something's wrong, and she looks for symptoms to support her feeling; meanwhile, the dad needs to see the symptoms first, before he agrees that anything is wrong."

 

And there's another quote that's stuck with me through the years, too. I can't remember who said it, but it was within the "Chicken Soup for the Mother's Soul" my DH gave me for a Mother's Day gift several years ago: "Having a child is like watching your heart walk around, outside your body."

 

I think it's why we mothers have been entrusted in life with nurturing new life, both before and after it's out in the world, breathing and growing on it's own: with rare exception, we're just better at the nurturing. And that tends to include, at least in our cases, the researching, the worrying, the seeking, the not-taking-no-for-an-answer.

[saidie10]

Thank you to my amazing new friends your responses touched me and made me feel MUCH LESS alone in this long and scary road. I have awakened this morning with a great sense of purpose. I will have doctors appointments today scheduled with someone...it's between the Neurologist in Houston and an Infectious Disease Doctor in Austin. Both have said they will treat PANDAS. Just which one is the right one is yet to be determined.

 

WOW, again, you guys on this wonderful board have made me feel much, much better! THANK YOU

 

It must be that pesky Y chromosome!

 

Like most of your experiences, my DH is supportive, and if I shove a research paper under his nose and insist that he read it before a doctor's appointment or something, he'll do it, but that's pretty much the extent of it. It reminds me of when I was pregnant and I read everything I could get my hands on and he just waited for me to pass on whatever information I thought he might need as I went along; apparently, that was my job as far as he was concerned.

 

Are your DH's also "authority prone," meaning they tend to take the word of an "authority figure" for gold, even if it doesn't set right with you? All my DH needs to hear is a doctor say X, and he's all like, "Oh yeah, that makes sense!" Even if it runs completely counter to our experience! It takes me to sit him down and point out the inconsistencies in some of the "expert advice" we've been given, or the experiential contradictions we're living through, before he'll acknowledge that maybe an "expert" doesn't know everything after all.

 

I posted this on another thread earlier this week, but it might bear repeating here, too. Dr. K., during our meeting with him last week, said, "The mom instinctively knows something's wrong, and she looks for symptoms to support her feeling; meanwhile, the dad needs to see the symptoms first, before he agrees that anything is wrong."

 

And there's another quote that's stuck with me through the years, too. I can't remember who said it, but it was within the "Chicken Soup for the Mother's Soul" my DH gave me for a Mother's Day gift several years ago: "Having a child is like watching your heart walk around, outside your body."

 

I think it's why we mothers have been entrusted in life with nurturing new life, both before and after it's out in the world, breathing and growing on it's own: with rare exception, we're just better at the nurturing. And that tends to include, at least in our cases, the researching, the worrying, the seeking, the not-taking-no-for-an-answer.

[smartyjones]

i find myself in the same boat as most of you. dh is certainly concerned and wants ds well, but it's in a different way. once when he was lightly hassling me about trying to find the end of the internet, i said, "you know you're thankful i'm doing that", he said seriously, "yes, i am". he will read articles - if not too long - or excerpts i give him.

 

and a few months ago, when i wondered if we should revisit lyme when i really didn't think ds had it, he said, "for someone who doesn't think he has lyme, you're spending an awful lot of time with it" -- low and behold, 8 weeks ago, dr diagnoses lyme.

 

i also get "you're on the forum again?" this from one who checks sports scores and blogs constantly.

 

one thing that has made an impact for him is other people's stories. he read a recent post about a child's hospitalization. it's kind of like a smack of reality - oh yeah, this is what we're dealing with. i did make him read saving sammy, i think he did have interest but also knew i'd be such a pain, it was just easier to read it. it did have a big impact for him seeing it's not so simple and he was really hit by the descriptions of how the other boys in the family were affected also.

 

has your husband read that? could that help?

[lboll]

Hi there,

Hang in there. I do know how you're feeling. My hubby is wonderful and so supportive. The unfortunate part is that he's supportive as long as I do the research. He won't read it. He still is convinced my son needs to test positive for strep in order to have PANDAS. I keep telling him that's not the case, but he doesn't get it, or won't get it, not sure which.

 

But as you said, the good outweighs the bad. So hang in there. Know that you have support!!!

 

Take care,

 

 

 

Thank you to my amazing new friends your responses touched me and made me feel MUCH LESS alone in this long and scary road. I have awakened this morning with a great sense of purpose. I will have doctors appointments today scheduled with someone...it's between the Neurologist in Houston and an Infectious Disease Doctor in Austin. Both have said they will treat PANDAS. Just which one is the right one is yet to be determined.

 

WOW, again, you guys on this wonderful board have made me feel much, much better! THANK YOU

 

It must be that pesky Y chromosome!

 

Like most of your experiences, my DH is supportive, and if I shove a research paper under his nose and insist that he read it before a doctor's appointment or something, he'll do it, but that's pretty much the extent of it. It reminds me of when I was pregnant and I read everything I could get my hands on and he just waited for me to pass on whatever information I thought he might need as I went along; apparently, that was my job as far as he was concerned.

 

Are your DH's also "authority prone," meaning they tend to take the word of an "authority figure" for gold, even if it doesn't set right with you? All my DH needs to hear is a doctor say X, and he's all like, "Oh yeah, that makes sense!" Even if it runs completely counter to our experience! It takes me to sit him down and point out the inconsistencies in some of the "expert advice" we've been given, or the experiential contradictions we're living through, before he'll acknowledge that maybe an "expert" doesn't know everything after all.

 

I posted this on another thread earlier this week, but it might bear repeating here, too. Dr. K., during our meeting with him last week, said, "The mom instinctively knows something's wrong, and she looks for symptoms to support her feeling; meanwhile, the dad needs to see the symptoms first, before he agrees that anything is wrong."

 

And there's another quote that's stuck with me through the years, too. I can't remember who said it, but it was within the "Chicken Soup for the Mother's Soul" my DH gave me for a Mother's Day gift several years ago: "Having a child is like watching your heart walk around, outside your body."

 

I think it's why we mothers have been entrusted in life with nurturing new life, both before and after it's out in the world, breathing and growing on it's own: with rare exception, we're just better at the nurturing. And that tends to include, at least in our cases, the researching, the worrying, the seeking, the not-taking-no-for-an-answer.

[dcmom]

Hi Sadie-

 

Just wanted to chime in. We are all married to the same men!

 

My dh is also really supportive, he believes in pandas, doesn't care how many doctors I take them to, etc.

 

BUT- I do all of the research, if I print it out, he doesn't read it, if I get a book on ocd and leave it for him, he doesn't read it. But then, when I act like I know the better way to handle some ocd issues- he balks like why do I know better.

 

He gets annoyed that I am on the forum all of the time. He gets annoyed that I am worried, or want to talk about pandas a lot. He doesn't have enough patience with the kids.

 

This has all been very isolating for me (although, I am so lucky, my Mom has been a rock for me)- and tough on our marraige.

 

But- when my older dd was severely going down hill, and we were battling the insurance company- I have to say dh really stepped up. He took the week off of work, handled dd really well, and fought with the insurance company on the phone everyday.

 

So- I guess what I am trying to say, it seems for many couples, one is the researcher, the advocate, the worrier. The spouse may have a different personality type. And this can be hard on that person. But your dh is there, he loves his boys, and when you REALLY need him- I bet will be there.

[faith]

Just for the sisters......... .......(sorry boys.... )

 

"Why Men Pee Standing Up"

 

Seems God was just about done with creating the universe -- but he had two extra things left over in his bag, so he decided to split them between Adam and Eve.

 

He told them that one of the things he had left was a thing that would allow the owner to pee while standing up. "It's a very handy thing," God told them, "and I was wondering if either one of you would like that."

 

Well, Adam jumped up and down and begged "Oh, give that to me! I'd love to be able to do that. It seems just the sort of thing a man should be able to do. Please. Please! Pleeease! Give it to me." On and on he went like an excited little boy.

 

So Eve just smiled and told God that if Adam really wanted it so badly, he should have it. So God gave Adam the thing that allowed him to pee while standing up and he was so excited. He whizzed on the bark of a tree and then went off to write his name in the sand, laughing with delight all the while.

 

God and Eve watched him for a moment and then God said to Eve, "Well, here's the other thing -- and I guess you can have it."

 

"What's it called?" Eve asked.

 

 

"Brains!" God said.

[Tenacity]

Essentially the same dynamic at my house. The terrific strain put on us by our child's illness has led to a new and extreme version of "division of labor" in the nuclear family. I have become a self-made 24-7 nurse, secretary, and PANDAS scholar. My husband works even longer hours at the office. It's really hard.

 

But I have often thought, what on earth would I do if I didn't have my husband?! Who would provide for our family, with me trapped at home and unable to go to work? Who would listen to me -- whether I'm giving a mini-lecture on the neuroscience of PANDAS or crying and yelling my head off -- and help me sort things out? Who would come to meetings in a suit and tie and stand up for our child, so that misguided medical or educational professionals don't find it quite so easy to brush Mom off as a hysterical nitwit?...

 

Thank God for good husbands!

 

Tenacity

[Phasmid]

Thanks for this post. Yes, I have always felt very alone, but not because spouse didn't care. He just doesn't understand all the medical stuff, and I think feels overwhelmed. So, here I sit, most nights, alone trying to find "the end of the internet" (that was very funny!) as it pertains to this stupid disorder. But this is how it has been for past few years. Actually, it started off reversed. I was so despondent and depressed over my boy's condition that I couldn't get out of bed. My husband was the one to start the search, and that got the ball rolling. For a couple years after my son was recovered from the first episode, I couldn't face hearing or reading anything about Tourette's or PANDAS. It was too depressing for me. Now I am spending too much time here and elsewhere. Dh gets annoyed I think, especially now that the boy is doing well. I think he thinks I have some obsession... which I probably do over it now. But, yes, it is a lonely, lonely place. Never have I felt so alone in my life. But we are very strong women (and men) who spend the time thinking and learning, and questioning our physicans. Be proud of this, and know that all of your efforts will come to fruition very soon.