[rainboteers]

Eight years ago I was diagnosed with something called psuedotumor cerebri, and please don't be to concerned it sounds so much worse than it actually is. It is when there is to much spinal fluid in your head and it causes similar symptoms to an actual brain tumor. The absolute worst that can happen is some vision lose, and that is only if you don't get treated. I sure hope I don't have anyone reading freaking out thinking you have this, it is rather rare. When I was first diagnosed they did a spinal tap on me and that pretty much took care of things, until lately...

I seem to falling apart lately, low thyroid, low blood sugar, depression, anxiety, dp/dr and the damn headaches are back full force. :x Went to the dr. and things aren't looking good. They want to do another spinal tap to drain the fluid (just incase). This leads me to my problem. I have to be awake during this and VERY still. I am terrified I will have a panic attack and start shaking or hyperventalating (which would very dangerous). I have voiced my concerns to the dr., but he sort rolled his eyes at me. I know that everything will most likely be okay, but I am terrified. Any tips on how to stay calm and collected when you are in a situation that makes you panic? I realize that most of you won't be able to relate (thank God), but I just thought I would ask...

When it rains it pours
pseudotumor cerebri poem

Tonight, I sit, at home, alone
My heart strings strike a heavy tone.
How much longer, will I, can I, be alone?

How can I seek your heart to steal?
When my emotions are exaggerated or blunted, but seldom real?
How can you understand, or know how I feel?

Could you be with me if you knew?
If you knew all I am going through?
Like, sometimes, for a moment, I might not remember you?

When my head is full, and it's hard to speak
My tongue is twisted and my mood is bleak
Could you be my strength, as I feel weak?

When I'm weary and tired and feeling the drain
Of the dizzy feelings and frequent pain
Could you be my sunshine, amid the rain?

Could you hold me close, as the room spins 'round
To keep me from falling to the ground?
And could you sing to me above the whooshing sound?

Could help me see, if I lost my sight?
Could you stand with me, in this constant fight?
Should I even be asking? Do I have the right?

--------------------------------------------------------------------------------

*The PTC Creed*

I promise to accept the fact that I have PTC, a neurological disorder which will limit my abilities in my every day life.

While I will always have PTC, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.

When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind.

I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family.

I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it looks like it already has.

I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.

I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don't have, but be thankful for what I do have.

I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh.

I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right
direction.

Lastly, I will not ask "Why me?" While PTC has weakened my physical body, it has strengthened my heart, my soul, and my spirit.

 

[ShyTiger]

hey rain.
Thought id respond as i have similar experience to you in needing medical stuff done whilst awake and having to stay still!(long story!!) Anyway recently what helped me through some stuff i was worried about was to make sure i stayed present. Not to keep imagining the procedure in my head with me panicing and freaking out. I made sure that everytime i started with that picture in my head i would stop myself and remind myself that i was present and ok. Also i kept practising relaxation techniques-passive relax where you scan your body for tension and relax that part ect. Know that you know what it is your having and that the people doing the tap will know about panic attacks and will help you through. I wish you the best and you are in my thoughts!
ShyTiger

 

[g-funk]

Can you not be sedated, you know, bit of the old laughing gas or something?

 

[terri*]

Hi Rainbo,

Shytiger and g-funk's ideas are certainly places to start. Sometimes they will give you just enough med to take the edge off. If this eyerolling doctor is the one doing it, and does not understand the anxiety you are already feeling about this procedure, then I think you need to have a meeting of the minds with him until he does understand this isn't some silly little jitters you are talking about. I believe having your feelings validated by him could be helpful.

Rainbo...your poem and Creed were wonderful to read and can cover anyone with a physical or mental problem. Thanks for taking the time to post them.

Most sincerely,
terri

 

[ShyTiger]

G What is that on your pic? Is it a dog? If so could you tell me what breed? iv never seen this animal its very cute!

 

[g-funk]

I know isn't he just SO cute!

Vulpes Zerda or Fennec Fox.

I want one!

 

[rainboteers]

Thanks for the advice. I now have a plan: I'm going to switch dr's. (a friend told me about one that seems to be much better), see if they can give me stronger meds due to extra anxiety, and bring a relaxing cd along because the whole thing takes around 20 minutes.

I seriously do not know what my problem is. I have been through this before, and I am really getting annoyed with myself. Besides in my experience mental pain is a lot worse than physical pain. Now I have a week to sit around and do nothing but feel awful and wait to have this done. :evil:

 

[terri*]

Well then, you just hang around here feeling awful all this week and share it with us. :evil:

Commrades thru sick and sin!

Your plan of action sounds good.

 

[rainboteers]

Thanks terri*! So I have full permission to whine? Really I have good news, I have been reading online and I am seeing that plenty of people take xanax before.

Can't wait for this week to be over. My head feels like it's going to explode and I am so nervous. :shock:

 

[terri*]

You have Carte Blanche as far as I'm concerned.

Whine, Baby, Whine.

Please make sure your brain does not explode because I fear you would have a hard time posting if such a thing occurred. :wink:

This thread is now officially proclaimed...by me, who only had power one time in a small off, off web production, Rainboteers' Whining Corner.

Let 'er rip!

 

[rainboteers]

I knew you took your wand with you (don't worry I won't tell, besides I took the shoes). :wink: lol people are really going to be wondering what I am talking about.

whine time...
I HATE needles with a passion. The medical profession really needs to come up with a better way of doing things. I feel like hell right now and it just sucks. I can't do anything. I went to look at furniture with my mom and I fell on the way in.

Thanks for letting me whine, I think I am all done for now.

 

[rainboteers]

Maybe I went way to far looking for information about spinal taps. I have completely freaked myself out. I was 15 last time I went through this and it was horribly painful. It wasn't as scarey last time because I wasn't aware that it would be so awful. I have found all of these horrible stories and possible complications while looking for information. I am sobbing all over my keyboard and I just don't want to go through this. I DONT WANT TO DO IT!!! (I know pity party, but it's my whine corner, and I am so scared).

 

[ShyTiger]

rain do you think that they-the medical profession would now be better at doing taps than when they used to?? Maybe they have new pain management stuff?? Anyway i also really hate needles! i feel for you and im going to send some postitive energy your way! Dont focus on what can go wrong it only builds you up into panicing. Focus instead on the benifits. I dont know what else to say but keep venting! What cd are you taking in?

 

[rainboteers]

Yes I am trying to focus on the benefits and that is helping quite a bit. Taking my sweet little niece with me (she wants to be a dr. when she grows up, so it is very interesting for her). Having her there will keep me very calm because she will get scared if I do. No worries now, I will be just fine. Thank you for the support, very much appreciated.

 

[g-funk]

Kids are so innocent. I wish we could remain untainted, and able to face every challenge is if it were the first time. Imagine that.
I had a medical procedure done once, involving tubes and bladder etc and I was petrified. My niece (who was about 3 at the time) had the same procedure and was the perfect patient, not scared and a lot more well behaved!

Which kind of illustrates even more clearly that our fear of such things is literally just fear of fear and connotations with emotions of previous experiences. We can learn a lot from children!

 

[terri*]

Hello there, Rainbo,

What day is this procedure scheduled?

I, too, am interested in what cd you are taking with you.

I'm glad you will have your niece there as you can chat about nonsensical, whimsical things with her and let your anxiety float above you but not in you.

The people that do this kind of stuff are great at talking to people with anxiety. Let them know you are anxious and I bet you they will be sweet and gentle with you. If not, get me their addresses and I'll send Lion over for a little chat with them. :twisted:

Wishing peace within you and peace all around you.
terri

 

[rainboteers]

I go in Monday morning at 4:30 a.m.! (I hate mornings), but I get to leave around 1:30. I kind of wish it was over with. I am so bored and I can't do much of anything.

My cd list thus far is:
enya- not sure of the name and I am to lazy to get up and look. I think it's paint the sky with stars or stars in your syes, something to do with stars.
Jack Johnson- not sure which one yet. Inbetween dreams, Brushfire fairytales, or On and On.
Trying to think of more and I am open to any suggestions. :wink:

 

[rainboteers]

Well... it wasnt nearly as I had annticipated (of course). All is done and I am just fine. Was such a wreck before my sweet little niece was wiping my tears and telling me to be strong. Kids are amazing. Our minds create mountains out of molehiles! Yes it hurt but of course my anxiety made me think I would be paralyzed after it was over. :roll: Anyways a bit sore headache is terrible, but its all over

 

[terri*]

YAY RAINBO !!!

So glad it is over for you.

We can close the Whine Thread until the next time one is in need of a good whine.

Tell me about this Jack fellow, please. I like, but have not listened to Enya in ages. Is he like them?

terri

 

[mcsiegs]

Rainbo - I knew you would be fine!!! I am SO proud of you. I always look at you as one of the strongest (yet, most sensitive) people on this forum.

Hope you get some good rest tonight.