A (possibly panicked) thank you

[Suzan]

Thank you all for your great responses to my "happy about my neurologist" post! That was really great to see your shared excitement about it.

 

I had a really hard day today. I worked from home and had the kids with me and was very busy with lots of meetings and tough issues in front of me. It was the first day that I really worried that I could lose my job if I didn't get myself under control.

 

My brain is so dysfunctional right now it's hard to believe, started at the end of July with my Parsonage Turner Syndrome event. I have always been a quick thinker and could keep many balls in the air at once, great memory and really on the ball, at least where work was concerned. I might not be able to keep my house clean but I could really impress everyone at work!

 

Now I feel like I can barely handle complex situations. I can't remember to finish an email. I can't remember an issue without fully briefing myself from notes. I can't wrap my brain around an issue to fully understand it. I can't handle detailed situations that may require that I organize, coordinate, strategize(is that a word?). This is what my job is all about right now.

 

In searching for a cure for my daughters, I find myself in this lyme fog that I did not expect to find myself. What would I have done if I was not searching for them? If I had not trusted that something was wrong with them, discovered PANDAS and the parents at Lattitudes? I guarantee you I would not have ended up going down the lyme path. My doctors never would have sent me that way. So it's a strange place to be in. I think I gave my girls lyme, but I think they helped to diagnose me.

 

Susan

Edited October 30, 2010 by Suzan

[matis_mom]

Thank you all for your great responses to my "happy about my neurologist" post! That was really great to see your shared excitement about it.

 

I had a really hard day today. I worked from home and had the kids with me and was very busy with lots of meetings and tough issues in front of me. It was the first day that I really worried that I could lose my job if I didn't get myself under control.

 

My brain is so dysfunctional right now it's hard to believe, started at the end of July with my Parsonage Turner Syndrome event. I have always been a quick thinker and could keep many balls in the air at once, great memory and really on the ball, at least where work was concerned. I might not be able to keep my house clean but I could really impress everyone at work!

 

Now I feel like I can barely handle complex situations. I can't remember to finish an email. I can't remember an issue without fully briefing myself from notes. I can't wrap my brain around an issue to fully understand it. I can't handle detailed situations that may require that I organize, coordinate, strategize(is that a word?). This is what my job is all about right now.

 

In searching for a cure for my daughters, I find myself in this lyme fog that I did not expect to find myself. What would I have done if I was not searching for them? If I had not trusted that something was wrong with them, discovered PANDAS and the parents at Lattitudes? I guarantee you I would not have ended up going down the lyme path. My doctors never would have sent me that way. So it's a strange place to be in. I think I gave my girls lyme, but I think they helped to diagnose me.

 

Susan

I hear you! I am on the same boat here. Dealing with the stress of my first diagnosed PANDAS, then seeing my daughter go down hill, trying to figure out why we all keep getting strep, and realizing we all have LYME!!! I have not gotten a positive yet, but I so know I have it. And if it wasn't for my son, I would probably have ended up an antidepressants (I was actually on them for a few months, thanks Doc!). Oh, the Frustration to think they could have caught it right then!!! I went in because one day to the next I was totally wiped out. After that depression hit. My GP wanted me to see a psychiatrist. My OB put me on Celexa. I took if a few months and then decided to wean myself off. I kept struggling with fatigue and depression off and on... Then I got too busy with life to pay attention, but I could tell I was not able to run things the way I used to. If it wasn't that we kept going to the doc because PANDAS DS kept going into exacerbation, we never would have made the Lyme connection!

It kind of gives validation to know you ARE ACTUALLY SICK. You are not just being lazy, you are not stupid, you are not slacking off. You can only try so hard to put on a smiley face and go on.

Praying a year from now we'll all be posting here about how great we feel and how amazingly well our kids are doing :)

[EmersonAilidh]

Thank you all for your great responses to my "happy about my neurologist" post! That was really great to see your shared excitement about it.

 

I had a really hard day today. I worked from home and had the kids with me and was very busy with lots of meetings and tough issues in front of me. It was the first day that I really worried that I could lose my job if I didn't get myself under control.

 

My brain is so dysfunctional right now it's hard to believe, started at the end of July with my Parsonage Turner Syndrome event. I have always been a quick thinker and could keep many balls in the air at once, great memory and really on the ball, at least where work was concerned. I might not be able to keep my house clean but I could really impress everyone at work!

 

Now I feel like I can barely handle complex situations. I can't remember to finish an email. I can't remember an issue without fully briefing myself from notes. I can't wrap my brain around an issue to fully understand it. I can't handle detailed situations that may require that I organize, coordinate, strategize(is that a word?). This is what my job is all about right now.

 

In searching for a cure for my daughters, I find myself in this lyme fog that I did not expect to find myself. What would I have done if I was not searching for them? If I had not trusted that something was wrong with them, discovered PANDAS and the parents at Lattitudes? I guarantee you I would not have ended up going down the lyme path. My doctors never would have sent me that way. So it's a strange place to be in. I think I gave my girls lyme, but I think they helped to diagnose me.

 

Susan

 

I can't even imagine!!! I'm so sorry to hear that. If it helps at all, on days like this you can always know there's a fifteen year old in Texas who understands the Lyme fog (not so much the helping children part though) & is always willing to talk! You can send a message my way anytime you need. Don't give up hope. One day we'll all pull out of the Lyme fog. I can't remember clarity but wondering about it always helps me to keep my head up. <3

[Suzan]

Thank you Emerson and Matis Mom! I am feeling much better today after dealing with much less complex issues like making my dd's birthday cake (she is 8 today). Only 2 more days and we leave for the LLMD. I know that only means our journey begins then but it is a welcomed journey. I hope I can remember that as things get worse after we start our treatment. I wish I had a big family here to help us but we will keep on pushing through and get better.

 

Susan

[sf_mom]

I wanted to respond to your post yesterday but forgot what I wanted to say!!!!

 

I look forward to hearing about your appointment.

[sptcmom]

I forget which LLMD you're seeing. But do keep us posted.

Jodie