Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
My children miss their mommy, my husband misses his wife...and quite frankly, I miss myself. I miss the woman who got dressed up, did her hair and makeup and went off to an important job everyday. Now, I'm lucky if I get out of my sweatsuit. I try to do my hair and occasionally I do my makeup, but I don't really see the point because I don't leave the house. I miss the woman that would anxiously greet her children with homebaked treats who helped them with their homework and eagerly listened to the events of their day. Now, they are lucky if I have straightened up the house before they came home, and while I listen to the events of their day, somehow it's harder to pay attention. I miss making plans to take them to the pumpkin patch and putting together christmas wish lists...but now I don't have the energy to go to the pumpkin patch and as I'm not working money is tighter so the idea of wish lists is just depressing.
There was a time when I was hoping to provide a beacon of light for those also diagnosed with PTC. I hoped that I could provide a positive outlook, helpful information and guidance to make their path easier. This year I wanted to start a fundraiser...now I don't even know where to begin. I'm losing hope myself.
My doctor doesn't return my calls when I am in crisis. She has stopped prescribing preventative medications. My last LP had an opening pressure of 30, and she left the needle in my back for 25 minutes. Now, I'm left with the memory as I have ongoing sciatica pain. She says she doesn't think I'm right for a shunt...so where does this end? My friends and family quite frankly don't want to hear about it. I'm finding that adults like to talk about things of little coincidence like an old cartoon from the 70's that made us laugh. Something funny our kid said. Something they saw on You Tube. Football scores, the weather, how much stuff they've accumulated. But, nobody wants to talk about sickness, finding cures, politics, ot anything that matters.
I'm finding that this disease is a lonely one and I'm losing "that little light of mine". When I was younger I used to sing a song about God's love for us just as we are...
"When the weight of all my dreams is restin' heavy on my head. And the thoughtful words of health and hope, have all been nicely said...but I'm still hurtin' wonderin' if I'll ever be the one I think I am....I think I am.
Then You gently re-remind me, that you made me from the first. That the more I try to be the best, the more I get the worst. And I realize the good in me is only there because of who You are...who You are.
And all I'll ever have to be is what You made me. Any more or less would be a step out of your plan; as You daily re-create me help me always keep in mind, that I only have to do what I can find...and all I ever have to be; all I have to be; all I ever have to be...is what You made me."
Many of you aren't believers, and that's okay. I do not write this to shove my beliefs down your throats...it's just to show that right now it's what is keeping me afloat.
No doubt this post is depressing, as no doubt I am most likely depressed right now. My friends have turned their backs, my family has become tired, my doctor has given up...and yet, the PTC defines me. I never thought I would say that this disease defines me...but, it does. It defines everything I do and everything I attempt...and now...I am tired.
I'm venting...I'm sad...but, I'm real. So there it is folks...even I can't be positive all the time.
MM3
There was a time when I was hoping to provide a beacon of light for those also diagnosed with PTC. I hoped that I could provide a positive outlook, helpful information and guidance to make their path easier. This year I wanted to start a fundraiser...now I don't even know where to begin. I'm losing hope myself.
My doctor doesn't return my calls when I am in crisis. She has stopped prescribing preventative medications. My last LP had an opening pressure of 30, and she left the needle in my back for 25 minutes. Now, I'm left with the memory as I have ongoing sciatica pain. She says she doesn't think I'm right for a shunt...so where does this end? My friends and family quite frankly don't want to hear about it. I'm finding that adults like to talk about things of little coincidence like an old cartoon from the 70's that made us laugh. Something funny our kid said. Something they saw on You Tube. Football scores, the weather, how much stuff they've accumulated. But, nobody wants to talk about sickness, finding cures, politics, ot anything that matters.
I'm finding that this disease is a lonely one and I'm losing "that little light of mine". When I was younger I used to sing a song about God's love for us just as we are...
"When the weight of all my dreams is restin' heavy on my head. And the thoughtful words of health and hope, have all been nicely said...but I'm still hurtin' wonderin' if I'll ever be the one I think I am....I think I am.
Then You gently re-remind me, that you made me from the first. That the more I try to be the best, the more I get the worst. And I realize the good in me is only there because of who You are...who You are.
And all I'll ever have to be is what You made me. Any more or less would be a step out of your plan; as You daily re-create me help me always keep in mind, that I only have to do what I can find...and all I ever have to be; all I have to be; all I ever have to be...is what You made me."
Many of you aren't believers, and that's okay. I do not write this to shove my beliefs down your throats...it's just to show that right now it's what is keeping me afloat.
No doubt this post is depressing, as no doubt I am most likely depressed right now. My friends have turned their backs, my family has become tired, my doctor has given up...and yet, the PTC defines me. I never thought I would say that this disease defines me...but, it does. It defines everything I do and everything I attempt...and now...I am tired.
I'm venting...I'm sad...but, I'm real. So there it is folks...even I can't be positive all the time.
MM3
As I read began this I thought it might make a good entry in your blog series about IIH. As I finished reading this I thought who in the hell is this woman? I have known her almost a year now and she has been a wonderful supporter of myself and many others here at DS. Through good times and bad she has been an avid member here and helped others cope with this illness even on her worst days. I know I have had my share of those days and I always felt good posting here knowing/hoping that MM3 would give me her best thoughts on whatever strange topic I decided important for my sanity to write about.
Well now I am reading about your sanity and it is bringing tears to my eyes. I cant hardly see the screen thru the tears. I am wondering where my friend is. How could she have so little faith in herself? Where are her thoughts? What has taken over her mind to allow her to think this illness has defined her. I want my friend back! Where did she go?
Please read Out of circulation by Bax. My comments were for you, not Bax. You know I am not a religious man but that does not make me one who does not care about friends and loved one. I am very concerned and worried about you right now. I want nothing more than to lift your spirits. Yet I am not sure what I can do to do that. I will send you a message with my phone number and you can call me anytime if you need someone to talk to. Please keep your faith afloat. Please dont let this illness consume you. Please fight to get back to the MM3 that wants what is best for herself, her family, and wants to raise funds for this cause.
MM3 can you hear me?
Please dont give up. I want MM3 back for myself and everyone here at DS.
TJ
I have been to that place you are now (just) visting. So many times my hopes have been dashed, all the while I live with this pain. But my saving word is;tomorow.There is always a chance for hope, humour and better days.Tomorow.
Let me say my prayers for you tonight. I pray for , peace of mind to be restored, strenght to be found again, and to look for that promise of tomorow.
I care monkeymom3.Cath278.
Oh my darling, how my heart goes out to you and aches with you. My Caiti has feelings like you, and it doesn't help when I tell her that God doesn't give us more than we can handle.
But every day I tell Caiti that we have to take it one day at a time, and not give up. And you must not give up, MM3! Did your doctor tell you why you were not a good candidate for a shunt?? Caiti's first NS told her that, and I went looking for a second opinion. And the second NS put a VP shunt in 10 days ago..
You must not give up - you deserve better, so go find another doctor - do it asap - I've seen posts from you where you recommended doctors and you knew them and you knew where they had their offices. Well now , you must help yourself...if you can't find another doctor, maybe the IH Foundation can help you - are you registered there??
Please, please, please....don't give up!! There seem to be so many doctors out there who don't understand this PTC....so we have to bypass them and go to the enlightened ones....
Keep fighting......
Judie
I suppose this last LP just pushed me over the edge. I was extremely nervous prior to the appointment, but the LP itself was very traumatic. But, what really hurt the most was when my doctor made me feel as if there wasn't any hope left. When she gave up on me...I guess, I had given up on myself.
Realizing that, through TJ's help and all of your kind words has brought me back to me. I'm not a quitter. I don't give up. And, I so want to not only get well, but to help many of you.
So...I called Dr. Katz' office yesterday and I have an appointment to see him in Columbus, OH next Friday the 30th. Hopefully, he will be able to do what my doctor here couldn't.
Again, I thank each and every one of you for renewing the light within. You've re-lit the spark and with your support, I'm certain it won't die out again any time soon.
Much love,
Khrystine (MM3)
Judie
Emotions are a process to me, they don't switch on or off but constantly change. This life is a evolution of learning about my true self and never giving up. If I gave up I would not be here right now (and beleive I have had a lot of times in my life when giving up would have been easier). Fight the fight, let our strength carry you, our words heal you, our hearts hold you. Don't forget the truth, you are deeply loved. Jazzy
When I found this group, I felt blessed. At least others with IH can relate to me. When I try to talk to others, I feel like they perceive it as complaining.....and it is sometimes. How else could it be perceived? We may each have different views on life, politics and religion, but we relate to one another because of having IH.
I recently refiled for disability on the grounds of IH, depression and anxiety. I think I have a better chance of getting it this time. The first time I filed, it was just on my diagnosis of IH.
I hope you snap out of it and feel better. It is not easy dealing with this, as we all know. Good luck and lots of love!
I don't always have the opportunity to read the posts, but I'm glad I saw yours. I was sadden to see your original post, but could certainly understand where you were coming from. I know that you are feeling better now... thank God for that! But I still want to tell you that you ARE helping so many of us on here. That you always have words of encouragement and that you are truly a bright light for many. I am also a believer and wonder from time to time why my life has turned out as it has, but I know without a doubt that God knows who I am, where I am, what I am, and how my life will continue to evolve. Wishing you many happy days and praying for your continued strength!
You have been a beacon for all. I have had a very rough week here in FL with the loss of that little girl. But hang in there. Aimee was wondering where you go for your NS? She doesn't trust many Dr's but she does trust the NO and NS at Mayo and our Pri, but no one else. If you need to vent, go ahead and vent we all need to.
I totally understand your filling of isolation, just remember that we are here for you. We UNDERSTAND what you are going through. PTC is so emotionally straining on our lives. It does tend to pull us down. But keep your FAITH!!!!! If he brings too it he will bring you through it. I am currently in remission so I speak from experience. And since my daughter has been diag. I'M GLAD I HAD PTC just because I CAN UNDERSTAND what she is going through.
MM3
I was thinking about calling Dr. Katz myself, bypass trying on docs that don't quite fit right, and go straight to someone I know is good. Columbus is only 3 hours away, and worth it.
I'm so glad you are moving forward. Good luck!
Bax
Rasta vibes are coming your way. In the grand sceme of things my NS (and UCLA hospital) are usually a 3 hours drive (but only 93 miles) thru downtown LA traffic (brutal but worth it) so the drive to see Katz would be a no brainer for me.
Good luck and go for it!
TJ
I have felt this way for nearly two months now. For about a week, I really thought I was dying.. then when it kept occuring and I kept not dying, I realized this was something I was going to have to live with. I'm sorry you feel this way. But, remember that you produced 3 beautiful children and snagged a wonderful man who's willing to stick with you when it's really tough.
I know you do not know me and just met me on here yesterday, but I am also being referred to Dr. Katz as I live in Columbus. I also have a spare bedroom, although, it only has a twin bed. However, if you ever need a place to stay when you're in town, you may stay with me.