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...
So many times many of you here on this board tell me how strong I am, how I inspire you, and how I am seemingly able to do so much given my battle with IIH. There is no doubt that I do try to accomplish all I can in spite of my illness.
And yet...somewhere along the way there is a disconnect. I am on this board everyday. My husband is always checking in with me to see where I am on a scale of 1 - 10. I talk about IIH on a daily basis. And yet, most recently it has become quite clear to me that although I have this daily interaction with my disease....I boldly ignore it's existence. There is quite a difference between living with your disease and accepting it.
Isn't it true that in AA they say accepting and owning your addiction is the first and most important step? If the same is true for having IIH, then somewhere along the way I have skipped this all important step.
I haven't worked for nearly 2 years now. When I was working I was the most popular employee at the Federal Building where I worked. I was well liked, worked extremely hard, and was known for both. The problem was that while I worked there I was very sick. It took everything I had to get through each day let alone the week. When I left there, I mourned the loss for almost 6 months.
This past Friday, after months of receiving invitational emails...I finally responded to a Federal Building after work gathering. I got all dressed up and looked forward to seeing friendly faces. To hearing how much I've been missed, etc. When I arrived I was shocked and hurt when nobody recognized me. I had forgotten what this disease has done to me. I thought I looked really snazzy. But, compared to the girl I once was...my new self paled in comparison. They couldn't recognize me with my short hair. And instead of telling me how much I was missed, I spent most of my time speaking with my replacement about how much she is needed and how much she loves her job. My old friends were now hers. I would've grabbed a strong drink to kill the sting...but, I had my medication before I left and this was clearly not an option now. When asked if I was working, I reluctantly replied that I wasn't as I just had brain surgery not long ago. And then....the awkward pause...
The drive home was long and lonely. I regretted going because I now knew that I didn't belong in that environment anymore. The days of high profile work were replaced by hospital visits, needles and medications. Today I was supposed to go back to meet some of those I didn't see at the gathering, for lunch. Last night I didn't sleep. Today I cried. And in the end, I couldn't bring myself to go.
If that weren't enough, I have a tough decision to make. As many of you know my 13 year old daughter is going to a National Dance Competition in Ocean City, MD. She desperately wants me to go. It's an 8 hour drive and the plan would be to stay a week, hang out on the beach, go to an amusement park, and of course, go to the dance competition. If I go, not only would I be doing the above...but, I would also be bunking in a condo with 5 other women and 7 teen girls. Sleep would be a rarity. Combine all that with the late July heat, ocean wave pressures and being away from home...mix in IIH....and we've got disaster! At least this is how my husband explained it after I already made plans to go on the trip.
Today, I must accept that he is right. I must accept my disease. I must accept my limitations and I must mourn the loss of my old self. I had hoped that my shunt would change things, but, alas I'm still not well.
I can't remember the last time I was this depressed. I don't know how to stop the tears...although I try not to cry in front of my family. I should be able to go with my daughter to Nationals. I should be able to work again. I should be able to live my life with an abundance of happiness. But, IIH has robbed me of these freedoms!
Today...I am mending my broken heart.
And yet...somewhere along the way there is a disconnect. I am on this board everyday. My husband is always checking in with me to see where I am on a scale of 1 - 10. I talk about IIH on a daily basis. And yet, most recently it has become quite clear to me that although I have this daily interaction with my disease....I boldly ignore it's existence. There is quite a difference between living with your disease and accepting it.
Isn't it true that in AA they say accepting and owning your addiction is the first and most important step? If the same is true for having IIH, then somewhere along the way I have skipped this all important step.
I haven't worked for nearly 2 years now. When I was working I was the most popular employee at the Federal Building where I worked. I was well liked, worked extremely hard, and was known for both. The problem was that while I worked there I was very sick. It took everything I had to get through each day let alone the week. When I left there, I mourned the loss for almost 6 months.
This past Friday, after months of receiving invitational emails...I finally responded to a Federal Building after work gathering. I got all dressed up and looked forward to seeing friendly faces. To hearing how much I've been missed, etc. When I arrived I was shocked and hurt when nobody recognized me. I had forgotten what this disease has done to me. I thought I looked really snazzy. But, compared to the girl I once was...my new self paled in comparison. They couldn't recognize me with my short hair. And instead of telling me how much I was missed, I spent most of my time speaking with my replacement about how much she is needed and how much she loves her job. My old friends were now hers. I would've grabbed a strong drink to kill the sting...but, I had my medication before I left and this was clearly not an option now. When asked if I was working, I reluctantly replied that I wasn't as I just had brain surgery not long ago. And then....the awkward pause...
The drive home was long and lonely. I regretted going because I now knew that I didn't belong in that environment anymore. The days of high profile work were replaced by hospital visits, needles and medications. Today I was supposed to go back to meet some of those I didn't see at the gathering, for lunch. Last night I didn't sleep. Today I cried. And in the end, I couldn't bring myself to go.
If that weren't enough, I have a tough decision to make. As many of you know my 13 year old daughter is going to a National Dance Competition in Ocean City, MD. She desperately wants me to go. It's an 8 hour drive and the plan would be to stay a week, hang out on the beach, go to an amusement park, and of course, go to the dance competition. If I go, not only would I be doing the above...but, I would also be bunking in a condo with 5 other women and 7 teen girls. Sleep would be a rarity. Combine all that with the late July heat, ocean wave pressures and being away from home...mix in IIH....and we've got disaster! At least this is how my husband explained it after I already made plans to go on the trip.
Today, I must accept that he is right. I must accept my disease. I must accept my limitations and I must mourn the loss of my old self. I had hoped that my shunt would change things, but, alas I'm still not well.
I can't remember the last time I was this depressed. I don't know how to stop the tears...although I try not to cry in front of my family. I should be able to go with my daughter to Nationals. I should be able to work again. I should be able to live my life with an abundance of happiness. But, IIH has robbed me of these freedoms!
Today...I am mending my broken heart.
I finally got my disability approved and have Medicaid. Now, I am scared because I have no excuse for not being treated. Without insurance, it was always easy to put other things first!
I hope you can pick yourself back up and stop feeling the way you are. It is a horrible place to be. Noone understands IH that doesn't have IH, or in VERY close contact with someone who has IH. They have no idea how hard it is just to get through a normal day. Then, you throw in appointments and such.....most people couldn't cope. I guess that's what we are doing...coping.
Big (((HUGS))) to you and I really hope you start to feel better...mentally and physically. xoxox
MM3 hang in there. You are loved I know it. Wish I lived closer so we could meet. I'm in San Diego and I think you are on the east coast. But dang just be strong, you are a great person. :)
MM3 Just remember that you are needed so much for your family. Even when the days hit and you don't feel as if you can go on. Remember that you just being there for them when they need to talk or for just a hug, well that's part of being a mom and IIH can never rob you of being your kid's mom.
MandyRee
For two reasons, I cant bear to think of you in such pain and it made me address my own feelings.
Oh, what a mess our lives have turned out to be,Nothing is simple anymore.Everthing is a struggle.Pain free days are a thing of the past and there are the days, when ,you pause, and think, whats it all for.
But I also see the beauty still in the world.I have time to see in now.
My world has slowed down to a snails pace but that can be good to. I spent my life running from one goal to other, pushing myself at times to the point of break,for what?!
I have found the meaning of happiness, I think! Its love. Its that simple. Everything else is icing.
From the time we are children, we are all shearching for the some one to share our lives with, be it a lover ,spouse or friend.We, as the human race, need each other. We need the contact of people or we shrivel and die. Some times , in our pain , we tend to forget to marval at this wonder.
Yes, Khry I know how you feel cause I am there to at the moment. I am fighting it for all I am worth. I dont even know why its happening. Things have never been better. But, still the black cloud creeps up on me. I tend to turn to music when this happens.
The song track for GLEE! is my chose today. Very up beat.
I think, we all should have had some professional counselling done when we found out we had this illness. But like everything else to do with it, we have been left on our own, again.
I think , there is a grieving process to go thru here.We have to learn how to say good bye to the people we were before we got sick, and accept the people we are today. If we had any other long term illness we would have been supported.So, we must help each other now.
Grieving , is a very complicated business. It can go back wards and then forwards and return again.It asks alot of us, to give up the person we know and love, ourselves.How hard is that ! I still miss the old me, I cry for her,I liked her. This new me, I didnt order this version, I dont care for her.Some days...
But , to go back to the love, I do have so much. Thats what keeps me going, why I get up every day.Why I keep trying.
When some days it all seems so pointless, I think of all the people in the world, who, have no love.And, I cry for them.I say my few small prayers and have another go at this living game!
My head is not great to night but I do hope Kkry, you get what I am saying and know how very important you are to me! Cath.
A couple weeks ago my dad and I got in a big argument because my disability was going to end on June 30th so either my dr. had to agree that I needed more time off or I was going back to work. Well my dad (he works for the same company as I do) knows that there is no way I could possibly do my job now or probably ever again because it is a sales rep position for Kraft Foods...I would be continuously on my feet atleast 40+hrs/wk, moving, bending, lifting, walking atleast 2mi./day and then you pile on the actual stress of the job. Well my thinking is in order to keep my insurance I would have to go back if I didn't get my disability approved but my dad knows its not possible. Well he's right...the next day I made some cupcakes that took atleast 3hrs (yeah they were very detailed and lots of steps but very good) and afterwards I had a headache and was in lots of back pain (from lp shunt still in placed that dr. feels is too big of risk to remove) and in stomach pain. How in the world could I go back to work if I can't even make cupcakes...& then I was sad cuz I made them at my sister's house so afterwards I hurt too bad to even play with my nephews, I just had to watch my husband and dad play with them.
And Mandy I understand your feelings towards your husband, not long ago I told my husband I should leave and go live with my family and let him live a normal life. Our lives could possibly NEVER be normal again and it's my disease I have to deal with it no matter what but he can leave and walk away and live normal. But like your husband he wouldn't do that and he'd rather have me and all my problems than anyone else.
Anyways Khrystine I might not have encouraging words but if you ever need to talk please feel free...I'm usually on facebook the majority of the day.
I have been fortunate to keep my job thru all of this, but it is still different. I wake up every morning wondering, how many people will ask me if i am ok today or if anything new is going on? Every day i say fine or alright but really i just want to scream at them "how the hell do you think i am?" but i dont i remain calm, bottle it up and cry about it later. there is something "new" going on everyday! but i dont tell everyone all the little things, I dont need more sympathy, i need a true friend who will stand by me and say " i dont care how sick you are, i dont care what youve been through today, lets go out party and forget it all" but no my friends barely call me anymore, and when they do they are just checking on me. I dont need to be checked on! i need to be loved!
I think thats what we all need, we all know how to "check" on ourselves, we know whats going on with our bodies and we know when we need to go to the dr. so dont help us w/ that, help us w/ an emotional break, a few moments where we dotn have to talk about IIH, a few moments where we can be "normall", a few moments where we can forget about everything and just move on.
Blessings,
KrYs
I work full time still, but I'm not the same bubbly over achiever I was and I miss me!
I hate that I can't do the things I used to and I can't participate in our family business and now a stranger does the things I used to. It hurts..but you are right the first thing AA teaches (I used to be a substance abuse counselor) is to accept your addiction and take one day at a time, which is what I'm doing.. one day at a time. What choice do I have?
First of all, big HUGS your way!!!! I feel for you! So much going on for you right now. Your work party, daughters dance competition and all of this is getting you down. With this illness remember we are only able to do what we can.
AND aren't you forgetting one VERY important thing - - the fact that your a mother!! that job in itself is a very important job. you have more than one child right? So you have all that to do too so take credit for that as well don't sell yourself short!!
I too am so guilty of not accepting this illness. I grieve my old self so badly. Because of this illness I know I must give up my current job because the stress it causes just makes my headaches worse and I just don't think it is worth it. I spend the majority of my time calculating payrolls and doing finance related budget things and its just become too much with my headaches and eyes and I'm sad to think about letting it go but isn't my health worth more? Aren't I worth more? I try to remember things like this in times like this... How do we weigh the good and the bad? How do we make these decisions and not feel guilty later? I often think of these things myself...I find myself in a situation like yours myself - I hate to give up a career because I know I'll mourn it for a long time afterwards but like many others on here it just isn't always possible to work and manage your health with this condition it just becomes to overwhelming. I'm not sure what I'll do I'm at the crossroads and I'm nervous. Some days now I just feel like I'll have a breakdown.
MM3 you brought a lot of things to light that I was thinking about recently :) I hope your daughter does well at her dance competition!!
Mandy
Now that I've caught up on some sleep and had some time to read over your replies and have a long conversation with my husband...I've made a decision! I AM GOING WITH MY DAUGHTER TO OCEAN CITY, MARYLAND FOR NATIONALS! I have never missed anything that my kids have done. I know I won't be able to live with myself if I miss this now. So, I talked it over with a couple of the other Mom's and the dance teachers. They were very encouraging and supportive. They, as well as my daughter, understand that if I go, there may be times when I have to pull back to get some rest. So, they may spend the day on the beach and I may take a nap at the condo. One of the other Mom's is a nurse, so if things go badly, she is there to help me. I REFUSE to let IH take everything. I am going to make this work. Cath...what you said is soooo true. Life is about love! Like you and Mandy, I am blessed with a wonderful husband who loves me in spite of my illness! And, likewise, I have a beautiful daughter, who loves me in spite as well. She needs me there with her...and I, likewise, need to be with her. Imagining being anywhere else is unbearable!
Additionally, I am happy to report that I may be starting a new home business! A few months ago, my daughter asked me if I would buy her a jacket at one of her dance competitions. It was a jacket that would allow her to wear her award pins on it. A lot of the girls had one. But, they were WAY over priced! So, I promised my daughter that if she let me...I would rather make her a jacket. If she let me do that I promised it would be far better than the one she saw. She agreed. I made the jacket, personalized it and "blinged" it all out! SHE LOVED IT! But, not only did she love it...but all the people at the dance studio loved it too! They all started asking for one. So far, I've made 10, but, haven't really made money off of them yet, as I've only been able to charge for supplies as costs are high. But, if I can put together an order form and start buying my supplies in bulk...I can create a business! So...that's the plan! I want to make custom made apparel. I want to photograph my work and place it on the internet...and I want to be productive again. I even want to make one for IIH awareness! Wouldn't that be cool? You guys would buy one wouldn't you? : )
So...that's the difference that a day, some sleep, some kind words, and some introspection can make! I've dried my tears, stood back up and now I'm back to fighting this disease! Glad to have you all here with me on my journey to winning!
Much love,
Khrystine
Dont ever feel bad about posting a down post,you or anyone. Thats what we are here for.To get each other thrru the bad days when they hit us.
This world of IIH, that we now live in,can be a scarey ,lonley place.At least, at the end of it, we have each other. Big cheer for us!!! Cath.
KrYs
I am so very happy you have new goals in mind. And that you will be joining your daughter. I know for her it's more about making memories with mom. She will remember you were there to support her in spite of how you were feeling. YOU GO GIRL!
The new business venture sound amazing. There are so many different jackets you could make. Maybe advertise personalized jackets. Children's names, team names, etc... This could be huge. Not to mention how great it will be for your self esteem.
I am so proud of you. I imagine your family is super proud.
I wish I could sew.. lol
I am amazed/inspired by your strength.
Betty
I am sooo happy to hear you are feeling better. I bet your daughter is exstatic!(sp?)
We too are trying to get out and not let this hold me down. My husband has wanted to go camping for the last 2 years but i just wasnt healthy enough and i didnt have enough energy.
I now think i may be ready. We are going camping 4th of july weekend. I am a little nervous being that far away from civilization. Im sure everything willb e fine, i just have to not worry about it, remember that we to can overcome this, not let IIH hold me down. When i was a kid we went camping 4-5 times a summer, my kids have not had this luxery yet, but im not going to let them go thru life missing out on things. I WILL be the mom that does it all! or atleast trys her hardest.
You are a wonderfull person! Thank you for sharing your stoy and showing me how to keep going.
Judie