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...
Many here have asked me about my trip with my daughter for Nationals to Ocean City, MD. We went for her national dance competition. We stayed in a condo with the studio owner, one dance teacher, one other mother and 6 other girls. By the time I returned home I was accused of being a drug addict, a negative person and as being someone who is both up and down and not easy to read.
While I prepared everyone prior to going by telling them about IIH, how it affects me and noting that there may be some days when I will opt to stay in at the condo and rest as opposed to going out....it still wasn't enough. I had brought all of my meds, (Pain, Nausea, Vertigo, Pressure), just in case. But, only ended up taking one of those. However, because they were all sitting out...I would later be accused of being a drug addict. As you will see from the following post I worked my behind off...but at the end of the day, because "they" couldn't see my illness on the outside...I just came across as being a negative person. Here is my post and the response it brought:
Khrystine Leist Duncan I look physically well. I put 110% of myself into EVERYTHING I do. But, the truth is I am VERY sick. Know that when I am carrying your props, applauding your talent, fixing your hair, doing your makeup, taking your pictures, running you to and fro....and all the while with a smile on my face....I am faking it because beneath the facade I AM IN PAIN. For you I will fight the fatigue, ignore the pain, and overlook the nausea in order to be your biggest champion. I will do this for as long as I can...until I truly can't do it anymore. So...before you judge me for being "up and then down" again....know what I sacrifice on behalf of your success. Have compassion for my pain, appreciate my love and do not spit in the face of my hospitality. It is because of my "positivity" that I get out of bed and fight my demons on your behalf. So before you accuse me of being negative, know that it would truly be much easier for me to curl up in a ball and selfishly take care of only myself. You do not know what gifts you have been given....but you have most assuredly been given many. While my body may have failed me, I am the same as I have always been. Who are you?
On a side note....This post is in no way directed toward any member of my family....they are the one group who loves me unconditionally....Including Jacqueline who I am SOOOOO proud of!
Jennifer Baxter I hear ya. It ends up being worth the effort, but it would be nice if someone recognized the effort cause for us, the hill is soo much steeper.
Khrystine Leist Duncan I was told by the people at my daughter's dance studio that I am not the same person I was before I got ill, that I am difficult to read and seem negative. This was after I had been up for 24 hours straight, making jackets and costumes for my daughter and her team before leaving for Nationals. Then I lent my van and drove 9 hours to Maryland for the event. The next day I was up at dawn and spent 9 hours at the competition site, prepping the girls and applauding their success...we got to bed around midnight.. In between all this, I helped clean and cook for 10 of us. The next day I was again up at dawn, again carrying props, and helping with hair, makeup, costumes, etc. I offered my money, time, love and support to the team...specifically the girl my daughter was competing against...whose own mother couldn't attend so I stepped in as a second mother. After another 9 hour day we were up with the girls until late hours. The next morning we went to the beach...and later that night to the boardwalk. I again helped clean and cook in between these outings...and on very little sleep. By Thursday, I couldn't go on any longer and had to retreat to bed. Thursday night I was told how "difficult I am to read because I am up then down". All because one day I retreated to bed. Friday, I helped clean and do laundry, helped the girls pack and drove 9 hours back home. Jennifer...would you be nice enough to share with those involved what IIH does to ones body and how difficult it was for me to do all of that with a smile on my face???? Of course, what hurt the worst, is that the girl that I supported as if she were my own came home only to spit in my face as she NEVER told her mother of the endless amount of support I gave her in her own mother's absence. Any help those of you with IIH can offer to express the sacrifices I've made would prove helpful. Thank you.
Margie Redmond That Girl's Mom Should've been there PERIOD. Did she ever say thank you for all you DID do for her daughter in her absence ?While she was sobbing because she didn't do well. People can be so thoughtless.Maybe had she been there it would sound better when she talks out of both sides of her mouth.And maybe just maybe with her direct support her daughter could have done a better job of representing the team !!Ewww they make me so mad !!
Khrystine Leist Duncan (Exhale)...Finally...That feels better...
Jennifer Baxter Any chronic disease makes regular life so much harder than most people give any thought to. Khrys, I don't know how you did it. I can't walk down a long hallway without some sort of consequence. Anything that raises bloodpressure, like minor amounts of physical activity, makes the head pain more severe. Not to mention carrying things, which will raise your intracranial pressure. We have immense amounts of fatigue, both from the illness and the meds we take. There's dizziness and nausea. Memory and concentration problems. We have to be very careful not to tip the scales too much, because it never fails that when you do lose yourself to the moment and do too much, a storm or your period will come along and completely take you out of commission. Even on a good day, the pain is relentless. Always present, never ending. Pushing against your skull, from behind your eyes and ears, aching down your spine. Always. Nothing makes it go away. You are tired and filled with such immense guilt for not being able to do as much as you used to, as much as you want to, as much as people expect you to do because you don't look sick. They forget you are frail and take you for granted. And out of guilt or sense of obligation you let them. And all you'd really like is for someone to notice how hard it is for you, but no one really does. They don't care, they have plenty of health to consider what it's like for someone who doesn't.
To carry things. To go without sleep. To drive. To climb steps in the venue. To yell and be around yelling. To put her needs last, when her body was about to give out from under her. They just won't understand and can't support you like you need. Screw their judgements, they don't even know.
Having said all of that, I recommend you to not martyr yourself again... draw boundaries and demand that others respect them. If you go along smiling, they don't know you are struggling. Prior to the trip, outline what can be expected of you, and STICK TO IT! Middle schoolers can pick up after themselves... I cannot carry anything... I have to get 8hrs of sleep, etc.... these are my conditions that I have to live with.
Hang in there!
Khrystine Leist Duncan Thank you Jen! The studio is a wonderful place that has brought a lot of joy to many of the children in our community. They have done wonderful work to help children like my own expand their God given talents and share their gifts with others. For other children who may not have found their niche...the studio has helped them find it. I want to do all I can to help them continue that work and support the girls. I don't think they're bad people, they just don't understand how I can look so seemingly normal but still be sick. An ignorance that is shared by many. Hopefully through this post and the following videos we can raise awareness.
Beth Gianforcaro Khrystine - I pray that each day will be less painful for you. Hang in there and let the love of your wonderful family carry you ...
Amalia Casmer Brotherton I know you have had such a hard time. You are the only one who knows actually how it is...and what you are going through...All we can do is continue to pray for you and pray that the Lord will bring you some mercy and grace to help you along the way..You are a real trooper never let anyone tell you anything different. They will never know how it is unless they go in your shoes. Love you for being you and a strong person. You can be setting examples for others.
Natalie Gabriel Barenthin Wow Khrystine...I completely agree with your friends. You were amazing in high school and you sound like you are even more amazing now. Those women just don't understand and probably need to put the negative towards you because they aren't doing enough. Like pointing out that you took a moment for yourself leaving out everything you did prior to having to take that moment. I can't even begin to know what you are going through but I know that you are amazing and don't let anyone tell you otherwise! !!
Rita Mary Manglona-Beck GIIIIIRLLLLL you tell me where nd when and i will go and confront those individuals that had the nerve to make such an ignorant statement!!!! They should have never let you do half of that stuff that you did. ALTHOUGH i know you would have been determined to do alot for the girls, they really should have insisted that you relax. Listen to Jennifer and put limits on your activity, if you don't you are takeing your moments away from your wonderful family. I LOVE YOU MAMA
Chris Duncan Well, lets place it in context and change the disease and use the same statements Khrys hears every day. I dont know how to take you since youve been diagnosed with cancer. Some days you seem up and some days you seem down. I know youre tired when you come home from having dialysis, but you just have to try and do a little bit every day and not think about it. I know its only been six months since your triple bypass, but you just dont seem as happy as you use to and we just dont see you around as often. I know you get tired really easy since youve had your stroke, but you promised we would do something today. Would anyone dare to say these things to someone with cancer, kidney disease, heart disease or a stroke survivor? What Khrys deals with is just as real.
Jennifer Baxter Oooh, I like Rita! "Listen to Jennifer"
And Chris is right. Sometimes I wish I looked as bad on the outside as I feel on the inside, just to get a little understanding. Not to have people doing things for me, or expect less or anything. I know how to manage my symptoms. Just understanding.
Khrystine Leist Duncan Your love and support means more than you can imagine! Thank you Margie, Natalie, Jen, Amalia, Rita and Beth. Sometimes when you are alone up against these battles you tend to forget that you have a large circle of friends and family who know just who you are and will love you no matter what. Chris, I think you put this all in terms they can understand...and I love you for it. Hopefully this will bring about awareness for everyone. Thank you all!!!
Beth Cahill Kuschner Khrys... you are an amazing woman and mother. When day to day activities are excruciating, but you still do them - that's perseverance and true guts. Those who don't understand - it's their issue and certainly not yours. You are a hero in my book!
I KNOW THAT WAS LONG...BUT I THOUGHT YOU ALL WOULD BE INTERESTED TO READ THE POST. HOW MANY OF YOU SUFFER THE SAME ABUSE FROM THOSE WHO HAVE NO UNDERSTANDING OF THIS DISEASE?
Khrystine
While I prepared everyone prior to going by telling them about IIH, how it affects me and noting that there may be some days when I will opt to stay in at the condo and rest as opposed to going out....it still wasn't enough. I had brought all of my meds, (Pain, Nausea, Vertigo, Pressure), just in case. But, only ended up taking one of those. However, because they were all sitting out...I would later be accused of being a drug addict. As you will see from the following post I worked my behind off...but at the end of the day, because "they" couldn't see my illness on the outside...I just came across as being a negative person. Here is my post and the response it brought:
Khrystine Leist Duncan I look physically well. I put 110% of myself into EVERYTHING I do. But, the truth is I am VERY sick. Know that when I am carrying your props, applauding your talent, fixing your hair, doing your makeup, taking your pictures, running you to and fro....and all the while with a smile on my face....I am faking it because beneath the facade I AM IN PAIN. For you I will fight the fatigue, ignore the pain, and overlook the nausea in order to be your biggest champion. I will do this for as long as I can...until I truly can't do it anymore. So...before you judge me for being "up and then down" again....know what I sacrifice on behalf of your success. Have compassion for my pain, appreciate my love and do not spit in the face of my hospitality. It is because of my "positivity" that I get out of bed and fight my demons on your behalf. So before you accuse me of being negative, know that it would truly be much easier for me to curl up in a ball and selfishly take care of only myself. You do not know what gifts you have been given....but you have most assuredly been given many. While my body may have failed me, I am the same as I have always been. Who are you?
On a side note....This post is in no way directed toward any member of my family....they are the one group who loves me unconditionally....Including Jacqueline who I am SOOOOO proud of!
Jennifer Baxter I hear ya. It ends up being worth the effort, but it would be nice if someone recognized the effort cause for us, the hill is soo much steeper.
Khrystine Leist Duncan I was told by the people at my daughter's dance studio that I am not the same person I was before I got ill, that I am difficult to read and seem negative. This was after I had been up for 24 hours straight, making jackets and costumes for my daughter and her team before leaving for Nationals. Then I lent my van and drove 9 hours to Maryland for the event. The next day I was up at dawn and spent 9 hours at the competition site, prepping the girls and applauding their success...we got to bed around midnight.. In between all this, I helped clean and cook for 10 of us. The next day I was again up at dawn, again carrying props, and helping with hair, makeup, costumes, etc. I offered my money, time, love and support to the team...specifically the girl my daughter was competing against...whose own mother couldn't attend so I stepped in as a second mother. After another 9 hour day we were up with the girls until late hours. The next morning we went to the beach...and later that night to the boardwalk. I again helped clean and cook in between these outings...and on very little sleep. By Thursday, I couldn't go on any longer and had to retreat to bed. Thursday night I was told how "difficult I am to read because I am up then down". All because one day I retreated to bed. Friday, I helped clean and do laundry, helped the girls pack and drove 9 hours back home. Jennifer...would you be nice enough to share with those involved what IIH does to ones body and how difficult it was for me to do all of that with a smile on my face???? Of course, what hurt the worst, is that the girl that I supported as if she were my own came home only to spit in my face as she NEVER told her mother of the endless amount of support I gave her in her own mother's absence. Any help those of you with IIH can offer to express the sacrifices I've made would prove helpful. Thank you.
Margie Redmond That Girl's Mom Should've been there PERIOD. Did she ever say thank you for all you DID do for her daughter in her absence ?While she was sobbing because she didn't do well. People can be so thoughtless.Maybe had she been there it would sound better when she talks out of both sides of her mouth.And maybe just maybe with her direct support her daughter could have done a better job of representing the team !!Ewww they make me so mad !!
Khrystine Leist Duncan (Exhale)...Finally...That feels better...
Jennifer Baxter Any chronic disease makes regular life so much harder than most people give any thought to. Khrys, I don't know how you did it. I can't walk down a long hallway without some sort of consequence. Anything that raises bloodpressure, like minor amounts of physical activity, makes the head pain more severe. Not to mention carrying things, which will raise your intracranial pressure. We have immense amounts of fatigue, both from the illness and the meds we take. There's dizziness and nausea. Memory and concentration problems. We have to be very careful not to tip the scales too much, because it never fails that when you do lose yourself to the moment and do too much, a storm or your period will come along and completely take you out of commission. Even on a good day, the pain is relentless. Always present, never ending. Pushing against your skull, from behind your eyes and ears, aching down your spine. Always. Nothing makes it go away. You are tired and filled with such immense guilt for not being able to do as much as you used to, as much as you want to, as much as people expect you to do because you don't look sick. They forget you are frail and take you for granted. And out of guilt or sense of obligation you let them. And all you'd really like is for someone to notice how hard it is for you, but no one really does. They don't care, they have plenty of health to consider what it's like for someone who doesn't.
To carry things. To go without sleep. To drive. To climb steps in the venue. To yell and be around yelling. To put her needs last, when her body was about to give out from under her. They just won't understand and can't support you like you need. Screw their judgements, they don't even know.
Having said all of that, I recommend you to not martyr yourself again... draw boundaries and demand that others respect them. If you go along smiling, they don't know you are struggling. Prior to the trip, outline what can be expected of you, and STICK TO IT! Middle schoolers can pick up after themselves... I cannot carry anything... I have to get 8hrs of sleep, etc.... these are my conditions that I have to live with.
Hang in there!
Khrystine Leist Duncan Thank you Jen! The studio is a wonderful place that has brought a lot of joy to many of the children in our community. They have done wonderful work to help children like my own expand their God given talents and share their gifts with others. For other children who may not have found their niche...the studio has helped them find it. I want to do all I can to help them continue that work and support the girls. I don't think they're bad people, they just don't understand how I can look so seemingly normal but still be sick. An ignorance that is shared by many. Hopefully through this post and the following videos we can raise awareness.
Beth Gianforcaro Khrystine - I pray that each day will be less painful for you. Hang in there and let the love of your wonderful family carry you ...
Amalia Casmer Brotherton I know you have had such a hard time. You are the only one who knows actually how it is...and what you are going through...All we can do is continue to pray for you and pray that the Lord will bring you some mercy and grace to help you along the way..You are a real trooper never let anyone tell you anything different. They will never know how it is unless they go in your shoes. Love you for being you and a strong person. You can be setting examples for others.
Natalie Gabriel Barenthin Wow Khrystine...I completely agree with your friends. You were amazing in high school and you sound like you are even more amazing now. Those women just don't understand and probably need to put the negative towards you because they aren't doing enough. Like pointing out that you took a moment for yourself leaving out everything you did prior to having to take that moment. I can't even begin to know what you are going through but I know that you are amazing and don't let anyone tell you otherwise! !!
Rita Mary Manglona-Beck GIIIIIRLLLLL you tell me where nd when and i will go and confront those individuals that had the nerve to make such an ignorant statement!!!! They should have never let you do half of that stuff that you did. ALTHOUGH i know you would have been determined to do alot for the girls, they really should have insisted that you relax. Listen to Jennifer and put limits on your activity, if you don't you are takeing your moments away from your wonderful family. I LOVE YOU MAMA
Chris Duncan Well, lets place it in context and change the disease and use the same statements Khrys hears every day. I dont know how to take you since youve been diagnosed with cancer. Some days you seem up and some days you seem down. I know youre tired when you come home from having dialysis, but you just have to try and do a little bit every day and not think about it. I know its only been six months since your triple bypass, but you just dont seem as happy as you use to and we just dont see you around as often. I know you get tired really easy since youve had your stroke, but you promised we would do something today. Would anyone dare to say these things to someone with cancer, kidney disease, heart disease or a stroke survivor? What Khrys deals with is just as real.
Jennifer Baxter Oooh, I like Rita! "Listen to Jennifer"
And Chris is right. Sometimes I wish I looked as bad on the outside as I feel on the inside, just to get a little understanding. Not to have people doing things for me, or expect less or anything. I know how to manage my symptoms. Just understanding.
Khrystine Leist Duncan Your love and support means more than you can imagine! Thank you Margie, Natalie, Jen, Amalia, Rita and Beth. Sometimes when you are alone up against these battles you tend to forget that you have a large circle of friends and family who know just who you are and will love you no matter what. Chris, I think you put this all in terms they can understand...and I love you for it. Hopefully this will bring about awareness for everyone. Thank you all!!!
Beth Cahill Kuschner Khrys... you are an amazing woman and mother. When day to day activities are excruciating, but you still do them - that's perseverance and true guts. Those who don't understand - it's their issue and certainly not yours. You are a hero in my book!
I KNOW THAT WAS LONG...BUT I THOUGHT YOU ALL WOULD BE INTERESTED TO READ THE POST. HOW MANY OF YOU SUFFER THE SAME ABUSE FROM THOSE WHO HAVE NO UNDERSTANDING OF THIS DISEASE?
Khrystine
I just tell people that even though i'm 25 my body ain't what it used to be the past few years have done a toll on me and i have to work super hard to act like i'm the same person no matter how much i hurt at the end of the day
So often I find myself very guiltily reminding myself, "At least I don't have cancer . . . this can't kill me." It's a horrible, horrible thing to think but on some level I am eternally grateful that it's "just" IIH. It can't kill me, although some days I really felt like it could. And I've found that as hard as it was pre-shunt, it's harder still now. Although I feel a million times better than I did I am still recuperating and not 100%. It will most likely take a while before I am "normal", whatever that is. But people seem to expect that you got a shunt and you're healed. So not the case! Really, really wish we lived closer so I could come up there and give those inconsiderate beings a piece of my mind.
Hang in there, you are one tough cookie and have been my inspiration from the day I joined DS.
*Hugs* KC
My best friend's boyfriend who is a totally idiot believes that I "can't possibly" be as sick as I make myself out to be. I babysit her 8 month old baby 6 days a week and she only pays me $50 a week, he is teething and cranky and not easy to deal with and honestly it's a very hard job for me. So, sometimes I ask her to find someone else to watch him on the weekends. He accused me of being lazy and attention seeking. I couldn't believe it. I have hyperparathyroidism on top of the pseudotumor and I heard in every inch of my body every day.
Some people honestly can not imagine what it's like to have a chronic illness. I remember a time when I was the same way. I was healthy and young and heard about these people who lived different lives because they were ill. I thought they were weak. I thought if I ever became ill, I wouldn't let it change me. But there's no way to actually do that. Now I realize the ignorance of my younger self. However, these people are still ignorant. They are blessed with someone we can't have - a healthy body. They WEREN'T blessed with a healthy mind. I honestly believe that being ill has liberated me from judging others since I now know what hardships can and do really exist. That is the only reason I am thankful for my illness.
The second reason I posted this was because I want you to know that if you do face this sort of ridicule...and it sounds as if some of you do....I want you to know you are not alone. The people who treated me in this way are not my friends....the people who responded in kind...are. Clearly you can see the difference.
The third reason I posted this...and most important...was because I wanted to share with all of you the uplifting and kind words that were shared with me. I hope that these words will bring you strength, relief, and a better understanding of yourselves...just as it has provided the same for me. Many of you have come to know me quite well in the year and a half I've been a member here. As such, you know that I can push myself quite hard...and feel enormous guilt when I can't go anymore. I now know it's okay to take a respite from it all...and I want you to know you can too.
As for you Ashley....I don't know how you do it. But, it's not right that you are working so hard with such little appreciation. I've no doubt that you've bonded with this child you're watching...but, can't help but feel that you might be better off finding some other way to earn some extra money. A way in which you aren't getting beaten up physically and emotionally. Either way, I'll be praying for you.
Much love,
MM3
Stay strong
Thank you so much for sharing the story. This is such a new diagnosis for me, but already I have felt so judged. I have been suffereing froma an excrutiating headache for 3 1/2 months. It is hard to believe how people have clearly identified themselves as true friends.
I love the definition from the Cleveland Clinic's website: Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating sounds within the head, closely mimic symptoms of large brain tumors.
So to make it clear to the people in my life who have an unrealistic expectation of me, I can say with confidence "Would you ask that of somebody who has a large brain tumor?"
Maybe people will think twice.
Meredith
This was a tough time for you and you gave so much of yourself. Shame on them. People simply don't understand and will never. I recently encounted something like this myself and was in tears over the remark of "what I'm doing with my life with a college degree" and I replied to this person how "they knew nothing of my situation and they should keep their mouths shut..." Poeple can be so cruel - my fathers remark to me about how I reacted to the person - I was being oversensitive. OMG - thank you for understanding you have never been ill, and do not know what I go through on a daily basis and do not even choose to understand. There I said it. . . :(
Somethimes those we wish and hope the most who should be standing by our sides (friends and family) don't and it sucks. I'm gald you posted this it gave other people outlook that they are not alone. Once again you prove to be inspirational to us all. You give so much and I am grateful to you for that.
Hugs,
Mandy
The abuse will continue....so thank God we have each other to keep our spirits up! HOORAY FOR US! LOL!\\