It seems like I always have to fight for myself when it comes to my health. Before it was when I was first started having seizures no doctor believed me they thought I was on drugs, crazy and everything in between but I still kept fighting. If one doctor didn’t believe me I went to another one. If that one wouldn’t help me Id go to another one. I knew something was wrong with my body. It took years but someone listened and helped me. I went from having seizures every couple months to going 2 years without one. That never would of happened if I fell victim to those other doctors thoughts that I was making it all up. I had to remind myself of that and draw strength and at times hope from it more recently when I had to start fighting again.
I have known for a year that something was wrong. I didn’t know if it was a broken shunt a clogged shunt or something else but I knew something was wrong. My symptoms weren’t normal, no treatment was helping and my neurosurgeon said that everything was fine. I actually started to accept that this maybe my normal. I felt bad enough to cry and beg him plead for him to do exploratory Brain surgery to find and fix whatever it is that is wrong. I knew it wouldn’t cure me but at least some relief, right? Well my doctors did not listen to me and we had run out of options so I found a doctor at Johns Hopkins one of the best hospitals in the country that specialized in my illness and did extensive research and worked in experimental treatments that would take my case. It took months to get approval from the hospital and insurance company and even more months sending records and images and setting up appointments but we did it because you do what you have to when its the only choice you have.
Once it was all complete it was time to put my body through hell and take this painful 7 hour drive to meet with a doctor who might say that he doesn’t have anything to help me either but I did it. The first two days was nothing but poking and prodding with countless test. On the last day before the doctors appointment my body is exhausted and mentally i’m drained, emotionally I am guarded. I don’t want to get excited or nervous and set my self up for bigger disappointment if he sends me away with nothing. We will call that cautiously optimistic because lets be honest in the back of my mind I was still praying that he would open that door with “Good news” that something was indeed wrong but we sat there and waited. The longer we sat the more anxious I became. Finally he came in and tells us that one of my shunts is obstructed and one is draining way to much although he doesn’t know why, he has a way to figure it out. Figuring it out means at least 2 more brain surgeries, possibly more and oh yeah I will have to drive 7 hours back to have these surgeries away from home, away from my family. He said all the concerns I had over the pass year were valid there was something wrong and had been wrong for awhile, what he found explained my abnormal symptoms. SIGH. I could breath again. For the first time in days I smiled. I was so happy I could’ve cried. It didn’t matter that hearing I was right meant that I had to surgery 8 and 9 and possibly 10 or that Id have to make a painful trip again, away from my family home. It meant I could get help, it meant someone listened, it meant the possibility of some relief, it meant validation.
Now if I had stayed at home, at the same hospital with the same doctor I could’ve gone even more years without help. I would be in so much pain for longer than needed all because I didn’t keep fighting.I listened to my body and I kept trying. No matter how many specialist said nothing was wrong with me.Who knows what answers you can find if you don’t even seek to find them. One doctor may not have all the answers but he may know someone who does. Or they may have a piece to the puzzle you need. And trust me I know that fighting can be emotionally depleting and financially hard but I promise it is worth it. If you know that you are not the type of person who can speak up for yourself or find the answers you need that is okay too but ask for HELP. There are patient advocates out there who will fight for you and stand with you. The validation you’ll feel from fighting for yourself and your health is a feeling that nothing can replace.
I am so excited because November is Epilepsy Awareness Month. I love when unrecognized illnesses get their time to shine. I wish that awareness was raised more for illnesses like Epilepsy. In October the NFL and many other large companies, hospitals even churches wear Pink for Breast Cancer, why not wear purple for epilepsy, or blue and green for Pseudotumor Cerebri. But not just the illness I’m lucky enough to have but all rare illnesses. The only way these diseases find cures is by research and research doesn’t happen if people don’t even know they exist. Since this month is dedicated to Epilepsy and I have first hand experience with it I want to talk about that.
In July of 2009 at Cedar Point I had my first “Episode” I passed out, and had to be attended to by paramedics. After an IV and some rest they sent me home. My family and I were terrified because nothing like that had ever happened to me . I was embarrassed because waking up with rows of people staring at you and not knowing what happened is the worse feeling ever. My doctors at home called it a fainting spell and said that I was fine. Months go by and nothing else happened. Now its January and me an my family get back from dinner when again I have an “Episode.” This time it was way worse, when I woke up I was afraid and I didnt know what had happened or where I was I couldn’t speak or move my left side. I cried and it seemed like hours before I stopped crying. The emergency room put us through hell…. At first they thought I was faking, then they thought I was on drugs, then they thought I just wanted drugs from them it was a horrific experience. Eight hours and a whole bunch of test later they sent me home with no answers. Experiences and Episodes like these happened to me for years with no help or idea what was wrong with me or why this kept happening. I had to leave college and stop jobs. I seen 13 neurologist and Pediatric specialist before I was diagnosed with Epilepsy. Many people with Epilepsy go through similar situations when trying to figure out what is wrong with them. April 7th,2014 is honestly one of the best days of my life. It is the day a neurologist diagnosed me. I was sad for a moment but relieved. It took months of research and observation on my part to learn my auras and triggers. Teaching myself things I could and could not do and and learning how to recover after a seizure. The hardest thing about it was learning to tolerate the medication and monitoring the side effects. The trial and error phase of medication when it comes to Epilepsy is atrocious and scary. The medications change everything. They affect all things
Issues with medications aren’t the only thing I’ve had to learn handle with epilepsy. Whenever you meet someone you have to decide whether or not to tell that person about your epilepsy. You have to deal with your mom having a panic attack every time there is a bump in the house thinking it’s you hitting the floor. We have to endure the fear of waking up and not knowing where you are or soiling yourself in front of strangers laughing. Not knowing if you should inform your new employer about your epilepsy, or tell your new friend. Losing hours of time not knowing how you got where you were. The worst part is learning to let go of control. With epilepsy you have NO control, not over how it happens,when it happens or where. That is what I still suffer with the most today.
After all these years and going through so much I’ve learned to adjust and with time you learn to accept things. Epilepsy doesn’t have me, I have epilepsy. Unfortunately enough it is apart of me and I will make the best out of it. Making the best out of Epilepsy means sharing my story with anyone who wants to listen to hopefully help them. Participating in Epilepsy events to raise financial support for the cause and doing anything I can to raise awareness to all so that maybe just one person will help someone they may know with Epilepsy or raise awareness themselves. I employ all those with Epilepsy to do the same raise some money, make some noise and tell your Epilepsy story. To those who support and care for someone with Epilepsy continue being amazing unsung heroes to us all, be sure to take time for yourself and raise awareness yourself by telling your story! Everyone else donate and research what you could do to help someone with Epilepsy. Happy Epilepsy Awareness Month!!
I have been in physical therapy for years and recently I have gotten a new therapist who I really like but this Monday he asked me a question and I have been thinking about the answer I gave and what it means ever since. He asked me what were my ultimate goals for therapy? Without thinking I answered that I want to be normal again….
Now I’ve been sick for awhile and everyday I am in some type of pain. As most of you know I use a cane and a wheelchair to get around. Does being normal again mean no cane or wheelchair, no more illness. Or does being normal mean less pain. I guess, I don’t really know. Which if you know me you know I don’t like not having the answers to things (lol)but anyway after thinking about it now for a couple of days I have concluded that I would not know what normal felt like even if it slapped me in the face.
When not only you’re physical chemistry is changed but your mentality and entire way of being is altered, You loose sense of what normal is or was and could be. Some days I hope to be able to feel something, anything other than the pain but it was not always like that. My normal use to be wake up, go to work, go to class , go to my second job and if there is enough hours in the day go on a date with my man. In this normal now I couldn’t maintain that schedule, remember enough to keep good grades in class, or drive. Its crazy I think of my life the way they talk about eras in history books. You know Before Christ, and After Christ. Only difference is mine is Before Illness and After Illness.
For me the best way to honestly answer my P.T question that began the whole thought is to figure out what my new normal is. What normal is for me in this After illness era. My goals need to be whatever I can do to be the healthiest,happiest version of myself that my body physically allows me to be.Continue increasing my endurance so that I can walk further distances without exhaustion, Work on standing longer so I can take a shower by myself for a change. Keep working on my balance so I do not have to walk with the cane even if its only sometimes. Learn how to manage my pain so all around I can do more.
The take away from this for me has translated to more than just what I need to be doing in therapy. I’ve learned that when you don’t know how to answer a question,take a breath and self evaluate.Figure out what your normal is and live in it. For better or for worse that is your new normal and in our case with chronic illnesses the new normal might be painful but its yours. Bare that cross whatever it may be with a smile on your face and you will get through to the end.
P.T- Physical Therapist
In this video I wanted to give some facts in the most simple way possible about this condition. The song used in the video was picked by my fellow warriors in a support group for Pseudo Tumor Cerebri. I hope you all enjoy.
Sometimes I get sick and tired of being sick and tired and when those days come I have to sit back check myself and realize I have so much to be thankful for.
I am thankful to be have one more day to see the faces I love. I get another chance to feel something even if its only pain. I am thankful I have made it through seven surgeries. The part that fellow spoonies may not like is, that I am thankful at times to my illness. Yes, yes I know Pseudotumor Cerebri and Epilepsy really suck but they’ve helped mold me into the woman I am today. Sick or not that is a woman I can be proud of. A woman who knows more about myself then I would have ever known at this stage in my life. It has shown me just how strong I really am. And that I can conquer all obstacles in my way. On top of that it renewed my faith in God. I have gone to church all my life but in hindsight I think I got to a point where I was going through the motions of prayers and church and everything I’ve gone through shook my reality and that earthquake renewed the faith I have in God. I can thank PTC and Epilepsy for showing me what real friends are and the true meaning of family. The most important of the reasons I am thankful to my illnesses is that I am more self aware then ever before and definitely more than most of the people around my age.
Its odd how something so horrendous can make us all into something so beautiful. I had a theology teacher once tell me that the world would be much better place if people seen the amazement in every moment instead of the strife. Doing that has given me a sense of peace that is priceless. I wouldn’t trade the understanding of myself ,the love I feel, the peace, and the closeness with my loved ones for anything. And That is why I am thankful. That is why on the hardest days I will turn to this feeling instead of the sadness that can overwhelm us on the worst pain filled emotional days. Changing the way you think really can change the way you feel sometimes even if its just for a little while .
Every week I sit here and write a post about something I’ve experienced and gone through. At times I even give advice on how I deal with things and what I have learned. Last night though as I’m gathering thoughts on what to write about I thought why not share from a different perspective. Talk about something I don’t have all together.So here goes nothing. Through being diagnosed, all of the surgeries and continuous doctor appointments the hardest thing for me to make peace with and accept has been losing my memory. I know memory loss is a symptom that many with chronic illness suffer from. All the different medications we have to take doesn’t help and Its worse when you have had lots of surgeries, brain surgeries especially.
Before all of that I had a memory so accurate and clear I could recite something back to verbatim no matter how long ago it was. Now, I can barely tell you how old I am. So many reminders, alarms and notes in my phone and all over the house just so I can remember to take my medicine. I’ve dealt with this for awhile now but it really hit me the other day when I was supposed to take my ID with me to an appointment. Now this appointment was far away from our home and I do not drive. Even after my mom reminding me, my phone reminding and my man reminding me I still forgot my ID. If they would not have let me in without it, He would’ve had to drive 30 mins home to get it and come back and I felt terrible. I was so ashamed I didn’t even want to tell my mom…. ughh who wants to deal with that? But what can you do when your memory is bad, nothing honestly you have to try and find ways to manage without memory. So that is what I do, I try to manage but it is a struggle I deal with everyday.
I get so frustrated with myself when I see the smile on my families face when I am telling them the same story for the third time because I forgot the other 2 but they let me keep going anyway. I cry when I cause chaos because I’ve over scheduled doctors appointments and they all have to be rescheduled. I have laid awake at night racking my brain to try and remember if I did everything I was supposed to do that day. I hate having to tell someone oops I forgot, again. The embarrassment you feel having to explain to a doctor or therapist that yes you’re an adult old enough to handle you’re own affairs but your mother needs to be involved and told anything important because you wont remember what it is they tell you.
Now I realize I have an interesting point of view because I watched my grandfather decline and furthermore die from Dementia. And now I deal with the short term memory loss. So I know what the frustration on the other side can be and how impatient the most patient people in the world can get when forced to deal with this. I now know all to well the pain that comes when you cant remember the pain you felt from what your memory loss may have caused. Maybe being on both sides of the coin is why it’s so hard for me to make peace with this issue.Or maybe I have and I just cant remember it.
Awareness video for Intracranial Hypertension or Pseudotumor Cerebri which is a rare neurologic condition that afflicts 200,000 people per year. It acts as a brain tumor but has no cure. These are some of the faces of people who Endure this condition everyday. Thank you to everyone who submitted their pictures for this project!
Awareness video for Intracranial. Hypertension or Pseudotumor Cerebri which is a rare neurologic condition that afflicts 200,000 people per year. It acts as a brain tumor but has no cure. These are some of the faces of people who Endure this condition everyday. Thank you to everyone who submitted their pictures for this project.
I have been in a committed relationship with a wonderful man for 4 years. He is honestly the best blessing I never knew I needed. When I met him I had medical issues but no where near sick like I am now. We all know that being chronically ill can have a tenuous strain on any and all relationships especially romantic ones.
It causes all types of issues, one that was hard to get used to was the surprise looks and comments you get from healthy people when they find out that we (the chronically ill) are in happy healthy loving relationships. You know those looks you get, the comments people make. I’ve heard it all, someone has told my man before how good of a man he is because he takes care of me. But yesterday I experienced the most offensive comments thus far. While at the hair salon a random hair stylist standing next to me watches as my man comes in to kiss me and let me know he is there to get me whenever I am done. After he leaves she turns around and says ” Oh I’m so happy you have a boyfriend you know and all with your situation and she points to my cane. As if my cane restricts me from being loved. I guess my “situation” as she calls it makes me a monster shunned from society who could never be found attractive. I could not believe her words. I’ve had people look at me with relief when they find out my illness hasn’t left me alone and rejected by all men but this shocked me.
After giving this woman a piece of my mind the anger left and the shock continued to set in, after that passed I realized I was a little sad. Sad that in this day and age someone who may be a little different than you is chastised.Yes, I am different but only because I am ill. I did nothing to cause it , I cant do anything stop it and I have no control over it but my peers think that this means that no one would love me. Or I am not worthy of a partner willing to put in the extra work it takes to be with someone chronically ill. Well my man, he loves me with a love stronger than most people ever feel healthy or not. And my illness does pose some challenges but in other ways it enhances our relationship. We appreciate the smaller moments that most people take for granted. We know what its like to spend nights in the hospital and see your significant other on what could be a deathbed it helps us to love harder.
I decided to write about my experience in the hair shop to hopefully let others who have experienced anything similar to know that no matter what people say or think, no matter the look they give you, the pity they may feel…. you deserve to be loved. You deserve that kiss your man gives you, the smile your woman gives you across the room, the love of your spouse. It doesn’t matter if they are your sole caregiver or not. Others opinions and pity is their problem not yours. Don’t let others ignorance make you feel like you’re less than or stop you from finding true love. Everyone deserves someone to love. No matter what medical device you carry around or illness you have, you have the God given right to be loved.
For day’s Ive tried to title this feeling I’ve had lately. The title of that feeling would be the title of this post. Luckily I found one and decided to leave it untitled. That is the perfect way to describe this feeling that I think all of us who endure chronic illness feel, untitled.
The feeling of helplessness. The guilt that racks your brain while on a yet another netflix binge instead of being productive. My least favorite of them all the exhaustion that never goes away no matter how much rest you get. The embarrassment of begging your doctor to do something anything to help you. The terror of working your ass off in therapy to get better but fearing that you never will. The feeling of not knowing how you feel just knowing you feel normal. Not remembering what normal is anymore. The weariness of needing to be in bed but not wanting to be in bed. Not being depressed but not being happy either just somewhere in the middle. And the hardest of them all to feel, yearning to feel anything other than the pain.
I hate this feeling. This feeling without a name without a warning or directions on how to conquer it or explain it. But it comes with the territory. I pray that everyone has something they can do to soothe that feeling. Me, I pray, listen to some music and try to watch or look at things that will force me to laugh. Slowly but surely the feeling will pass even if only for a little while. My best advice, don’t fight the feeling, Acknowledge it and allow it to pass. This feeling is just apart of enduring. We can all endure through this as well.