It is a safe place for you. It's where so many of us come to vent because a lot of us don't have anywhere else to do it or anyone else that can understand. So whine away, vent, whichever you like to call it, and don't be sorry for it! Storms make me absolutely miserable too.
Hugs!
Brandee

Thanks, Brandee!

My mom has always been my support here at home, but tonight when I started to say how terrible I felt, she said "don't be so dramatic! You've felt it before!" But what she does not get is that I spent over three months with it in complete remission and storms did not effect me this much! When it is in remission and the pain is gone, it makes it feel and seem ten times worse when it comes back at all, you know!?

I know it will ease when it storms, but gosh! I wish it would storm already!

And I do not mean that my mom is not sensitive to this or mean in any way! She was the one who spent every ER visit with me...I am twenty-five and every time I was admitted, no matter for how long, she was the one who stayed with me at all times and would run home and get me whatever I wanted to keep busy and comfortable...so I love her dearly just gosh!

Exactly what Brandee said! If we don't vent then we hold it all inside and it makes us even more sick! :-) I haven't had problems with storms in the past but the hurricane that just came through really messed with me, so I feel your pain!
Danielle

Danielle, the weather that is coming is actually the last of the hurricane! I am assuming mother nature is not a big supporter of a cure for PTC...lol :)

I think that people in our lives get worn down by our pain. It is pretty awful that your Mom said that, but she really can't understand. My Mom used to tell me all the time that my headaches can't be that bad if I'm still able to be up and around, until she started to have high pressure headaches because of a spinal problem, then she called me crying to apologize every day for weeks.
Remission actually scares me. After over 6 years of a constant headache it would be so wonderful, but relapse scares the crap out of me. Sometimes the people that we love just hit an emotional wall when they see the pain tumbling back down on us. It's like "Ugh, more of this?" I know it doesn't mean we aren't loved. I have the exact same thought about all of it myself, especially on the days I wake up and have a really hard time seeing.
I hope that the rest of the storm passes quickly.

Danielle - Are you okay since the hurricane? I don't know exactly where you are, but did you and your family come through safely? How are you feeling?

Brandee

Brandee,

My mom is on disability from a car accident five years ago this past weekend where she had to have neck and shoulder surgery and still has bad, bad back problems and headaches...she can hardly even get up to do her daily stuff, so she gets easily frustrated...which, I of all people understand! So I do not blame her for feeling that way...I feel that way about her sometimes...I guess we just can't help that our thoughts go there sometimes...even if we don't mean to! I sure don't mean to. :(

I'm TERRIFIED of the pain coming back. It scares me so much that I start to shake. I honestly will fall apart if that happens in the future. I will go from this strong person I have become to an absolute mess!

No one in my family seems to give any compassion. Half the time they make me feel like im just a complainer. If it wasnt for this site I dont know how I would be able to let go and tell somoene how I feel. Im going to the neruologist soon to discuss the shunt and I feel so scared and alone. My husband acts like its just a walk in the park. People just dont know how to have compassion for what they cant understand. I have had to stay in bed for days at a time at some points and my husband comes home and says what you didnt make dinner. It really hurts my feelings.. I know its not a good feeling.

Many, many people (the majority, actually) that do not suffer with IIH/PTC do not even take a second to imagine what we go through. We can say that our head hurts (or our eyes, or we are nauseated, etc.) and to them it is like, "oh, you have a headache...take Tylenol! You'll be fine in an hour!" But that is not even close to the case...

You have the support here that you are lacking at home.

I am so sorry to hear that your husband is not that supportive...I have not allowed myself to be in a committed, serious relationship since I was so sick with PTC. I was engaged a year ago and I ended it (after postponing the wedding twice because I was too sick to even get out of bed) because I was not going to be able to give myself over the way I should and because I am not trusting enough to believe that someone will take the time to understand...I have not had that experience yet! Thank God I postponed it and didn't go through with the wedding!!!

I'm here for you!