Having Pseudotumor is living your best life, making memories with your child, enjoying your husband, working on your business and Boom a Pain that stops you in your track 

Pseudotumor is trying to make the most out of the good time and live a semi-normal life and boom now you have to try and hide the pain from loved ones. 

Pseudotumor is trying to adapt your life so your illness & disability won’t affect your childs life. And Boom it starts too. 

Pseudotumor is making yourself believe that this new pain, this worse pain is nothing. That you’re managing just fine and then boom your husband is forcing you to call the doctor. 

Pseudotumor is arranging rides to hang out with friends, going to see family and then boom arranging rides to constant testing and doctors appointments….again

Pseudotumor is going 2 years and 6 months without surgery then boom getting the call no one wants to hear telling you surgery is being scheduled. Feeling nothing but gratitude that’s it’s been this long 

Pseudotumor is having to tell your family, it’s trying to explain to people who don’t understand why you were okay two weeks ago but you’re having brain surgery today. It’s hearing “but you were doing so good, what happened.” It’s cringing when you hear people wish you a “speedy recovery” when you know that for you it’s not speedy. You’ll never truly recover. It may be 6 weeks, 2 years or 20 years but this will be your fate again. It’s fearing that things will be worse after the surgery and not better but praying for better

Pseudotumor is feeling lonelier than ever (although you’re not) because no one can really know what this does to your being or how it feels to be in the pain you’re in Pseudotumor is grieving yourself and the time you’ll lose during the process of surgery and healing. It’s also feeling relieved that hopefully some of the pain will be gone. Then feeling guilty for the relief you just felt, as having surgery is going uproot & change your loved ones lives. It’s knowing that this illness can kill, that every surgery is risky but pushing that thought out of your mind as you try to remain positive. Having Pseudotumor is rough, it’s scary, it’s a constant relearning how to battle it at each stage of your life. Pseudotumor Cerebri is all these things and so much more. Here’s to surgery #16

Keep me and my family in mind as we relearn how to navigate this lifelong battle. 

To all my PTC/IH/Chiari people who are Enduring right now. Know that you’re not alone. Keep Enduring!! We got this 

This past weekend I had the opportunity to travel to Georgia and attend a Georgia football game with my husband. Georgia is his favorite team and I wanted this trip to be so special for him. 

And it was very special and so much fun but as I get the looks from people wondering how I’m able to get out my wheelchair as he escorts me to our handicap accessible seating, I begin to think about all the things those people staring don’t see. 

I bet you’ve seen someone disabled post something and wondered if they are really disabled, how or why they’re able to do some things. I’ve posted fun moments and had people ask me if I’m always in pain, how I was able to do it. People have said because they see a picture of me sitting at a wedding without my cane that their glad I’m not stuck in the house sick anymore. So I know it’s something people think about.

Chronically ill/ disabled people are able to do anything they want. it may look different but we can do it. We do it because there are things you can’t see. Those people staring at me in my wheelchair didn’t see the weeks of doing nothing to prepare for my trip. You don’t see the extra medication, the increased pain. What you don’t see in that post is the bag with the heating pad, the pillows, blankets, cushions just to be a little bit comfortable. The wheelchair, cane, walker and all the space that takes up. The hand sanitizer, gloves and mask you desperately need. The glasses and magnifiers, ear plugs you need to function. We don’t show you the hidden tears as you struggle to make it through an event. We try and hide the irritation and mood swings from increased pain. You don’t get to see the hassle of dealing with customer service to get accommodations. They don’t see the essential oils, puke bags, medical alert bracelets and medical information you have to have at your disposal. You don’t see or feel our pain. They don’t see you trying to make a moment special for someone you love They just see you having fun. 

They see you having fun for a finite amount of time, trying to enjoy life despite of how you feel daily. They see you without really seeing you. 

I want to encourage all those like me to Do it anyway. Ignore the stares, the comments, that little feeling in your head telling you not to do it because people won’t believe you’re really sick. Do it anyway. Let them see you enjoying life too. Let them see the pain & strength. Do the extra work, be ready to adapt and make that moment count. 

If you’re one of my able bodied friends I want to encourage you not to judge. To look at people with kindness. Appreciate people’s time. Especially when you know they’re chronically ill. Instead of resting, giving in to their bodies pain & fatigue, they’re spending time with those that matter. You never know what people, disabled or not have to go through. You don’t know what it took for them to be there. Don’t take how easy it was for you to get up and go for granted. See the person fully. Ask questions if you need, help them but don’t judge. You don’t know what you don’t see.

I’ve been sick for awhile now, with that I went through the acceptance and grieving process a long time ago. No one ever told me that I may have to continually go through that process. So if you follow me, you know that I had a baby. Since that time I’ve found myself having to accept all the things about my disability and illness that I thought I had accepted years ago.

For instance I haven’t driven a car since 2014 and until now I understood that and most times don’t even think about that fact. I figure out how to get every where I need to. I know I can order a lyft or ask a family member or friend for a ride. But now I’m relearning to be okay with the fact. I have to be okay that I’ll never be able to pack my son up and drive him to the park. To sit in the dreaded pickup line after school and get him. Simply go on a drive alone. Take him on a date with a driver. Drive him to pick up a gift for his dad. None of those things will happen without someone’s help and that makes me sad. There’s nothing I can do about it & I will learn ways to get out with him alone but it does make me sad.

I’m reaccepting the limitations of what my body can do. I learned a long time ago that I can’t physically do everything. There are times I have to take a break. There are events I cant always make. I’m not able to jump on trampolines and hang upside down on jungle gyms. I was okay with all of that…. until now. This is my son and there are things he’ll want to do, that I may not always be able to do. Even at this age chasing his quickly crawling self around the Livingroom is physically exhausting. So I’m learning again to be okay with my body in spite of of it’s limitations. I remind myself that doing my best is all that I can do. And that of course it’s okay to not be okay. He’ll love me regardless and he’ll always see, that mommy always tried her hardest. I don’t have to be at 100% everyday I just have to be there for him.

Once again I’m accepting that I have an illness with no cure and limited treatments. More than likely in my sons lifetime I will have to have major surgeries to treat my Intracranial Hypertension. That scares me. That’s a fear I didn’t have before. I knew surgeries were coming, I even asked for them at times. I was okay with that fact that multiple brain/spinal surgeries were in my future. I mean at this point I’ve gone through this 15times. If that’s not acceptance, I don’t know what is but recently I’m having to accept it all over again. I have to be okay with the fact that God forbid if something happens during one of those surgeries and my son looses me. Or even worse for me I loose my vision and the ability to see him.

I guess I’m just in this phase of relearning, reaccepting that this parenting thing, that is already the hardest job in the world is going to be even harder for me. This phase is something my able-bodied, healthy parents can’t necessarily understand. When you become a parent everything changes but in my case things are changing & staying the same and I have to remember that it’s all okay. Ezra won’t care how we get to the park, he won’t care if I have to be on my cane to play with him. He will love me through the surgeries & any side effects that may arise from that. No matter what everything will be well. My son will have all he needs, I will always do my best, I will learn to adapt in every situation and we will experience an amazing life together even if it looks a little different. Hopefully my adaptation in life, will teach him to do the same no matter what life throws at him.

My take away from this and something I hope we all can remember is that acceptance like healing isn’t linear. You don’t just decide one day that you’re healed from something/have accepted something and then that’s it, process over. Life will change, circumstances will change that will force you to reevaluate and think about things you never did before, or in away you never did before. Changes will force you to go through the process over and over again. So don’t get discouraged by old feelings with healing & acceptance it happens. Face it, do the work. Everyday accept your situation for what it is and make the best out of it. Remain positive and thrive however that looks for you

It’s been awhile since I’ve wrote something and I must say I missed you guys. And the release writing gives me. Anyway I’ve been away because I was growing a baby!!

Becoming a mother has been a dream since I was little girl playing with my baby doll I named Elizabet. With all my health battles for awhile I didn’t think this would be possible for me. I’m so grateful that I was able to carry and birth this perfect little human.

Like everything with us, it wasn’t easy. Before we even started trying there were countless doctors appointments, test and decisions to be made. Trying to get multiple doctors in multiple specialties to agree if it’s the best time or even the best decision to try and have a baby is difficult but after a few months we had the green light. After that came the long part, trying for baby. Because of my PCOS and all the damage to my body from Intracranial Hypertension and surgeries I didn’t know if it would happen. It happened but boy did it take a long time. Seven months of waiting, wondering, watching to see what would happen. Finally in January of this year we found out we were expecting! Then came an even harder part, keeping this growing human inside of me and myself healthy for nine months. I had to convince an OBGYN to see me sooner than a normal pregnancy. I had more ultrasounds then typical pregnancies and I went to the high risk doctor and my OBGYN every two weeks. After that and an anesthesiologist work up we were cleared for a natural delivery.

Although I should’ve I didn’t anticipate my IH/PTC affecting my birth plan. I wanted to have a completely natural delivery no restrictions, no medications, But IH/PTC affects EVERYTHING and had other plans. Though I was cleared for a natural delivery, it had to be with minimal pushing. Because pushing can increase abdominal & intracranial pressure especially if you have a VP Shunt. Once labor started my head started throbbing, my shunt felt clogged and I was in so much pain I couldn’t get up to move around and help progress my labor. So here comes the epidural. Now if you have IH, you’re no stranger to spinal taps and epidurals are very similar. Getting the epidural was easy, it was everything that happened after that was traumatizing. I became numb everywhere, extremely fast. I couldn’t swallow, my blood pressure dropped, I was in and out of consciousness, babies heart rate dipped. It was scary. The doctors think it’s either because of the way my body metabolizes medication or because of the previous surgeries I’ve had in my spine, idk but if you’ve had multiple spinal surgeries it can happen for you too(make sure to do testing before and pay attention to how your body feels). At the end I had to have an emergency c-section but my beautiful baby boy Ezra Allen Easley was born healthy and everything else that had happened made no difference.

So im sure some of you are wondering why I just explained this story. Because people have asked me how my pregnancy was and if my conditions affected it. The answer is YES. Also I wanted to let my fellow warriors know potential risk for them and that it’s possible. Intracranial Hypertension, Epilepsy, Chiari, PCOS all played some role in my story. What I learned though is that chronic conditions affect EVERYTHING and things may have to change, they will be harder but doing those things regardless of that fact is almost always worth it. For a long time I feared having a child, even though it was my dream. What if he was sick like me? What if I couldn’t carry a child? What if his life was inherently harder because of my health issues? What if the delivery wasn’t possible for me? I still don’t have all the answers but I know that i’m so glad and grateful I took the leap anyway.

Even if you are one of my able-bodied followers there is a lesson in this story for you too. Your current situation or past decision may have a lasting affect on your future but don’t let that stop you from trying to do anything. I got my son out of it and even with everything the extra doctors appointments, the planning, the worry, the pain, the change of plans, the affect these illnesses had on my body. I wouldn’t trade it for the world. DO IT ANYWAY

If you’ve spoken to me intimately or follow my story and you’re chronically ill, you’ve probably heard me tell you to be selfish. After a conversation with an able-bodied friend who didn’t quite understand why I would tell people that I thought I’d elaborate. I know this may be an unpopular opinion but when you’re chronically ill every little thing in your life can affect your illness. Stress with friends, arguments with family, drama, even being uncomfortable can cause problems with your health.  A flare up, A hospital visit, extra medication all things we dread & don’t need. 

Which is why I say be selfish because we have to be. We may not be able to handle your Drama, so we can handle our health. We may have to cut you off after repeated arguments to preserve our mental health to make sure we can battle our illness. We may miss small family gatherings to rest. You might not be able to come and stay at our house for 6hrs because sitting up that long is draining.

See it’s hard for people who don’t have to endure it to understand how difficult it can be to battle your own body. The one thing you’re supposed to be able to depend on,that betrays you with pain everyday. Add on to that normal everyday stuff, whew no wonder we’re exhausted all the time. So if we have to be a little selfish to have more strength to win against our bodies then so be it. 

Honestly in a way it’s not only for us but our loved ones as well. Being selfish at times allows us better days and more time to spend with them. So ask people to leave when you need to rest, exit stressful situations, don’t allow anything to disturb your peace, be selfish for you, for them, for your well being, and because you have to be. The right people will understand and if they don’t, they don’t need to be around anyway. Take care of yourself so you can be there for those you love and simply because you deserve it.

I’ve been reminded lately how I don’t typically use the word survivor when I speak about my illness and all I’ve been through. And they’re right I don’t but with good reason. When people use the word survivor that means you survived an event that could’ve taken your life or almost took your life and didn’t! But what about when the event hasn’t ended? Or it won’t end. When you talk about surviving a medical event or Chronic illness the event is ongoing. The event never ends and all the things that come with it never stops. Since I was diagnosis I’ve survived 14 surgeries, 5 of which were brain surgeries. I’ve survived emergency hospital visits, seizures, side effects from medication and lifelong complications. So instead of survived, I say I Endure! I have to keep enduring because my event never ends. My illness never stops. To endure means to remain. With Chronic illness we may remain in our situations because we have no choice but we last through the difficult times because of our strength. When you use survivor, some people feel as though you’re a victim and I, We are no victims, we are warriors who Endure. You can endure the bad and not suffer.In my opinion both words are accurate but I choose to keep enduring and I hope you do as well.

Hello all! It’s been a long time since you’ve heard from me I know and forgive me but there been a lot going on. For starters I’ve had 2 surgeries this year and we started a tea company, also I’ve been receiving training to better serve you.But I am not writing today to update you on my journey but to talk about something much more important….Disability Pride Month.

I am embarrassed to say that until this year I didn’t know there was a dedicated month for disability pride. But I do now and I will forever celebrate it. If you don’t know, Disability Pride Month was first observed in 1990 and has recently become celebrated with parades and festivals more around the country. The purpose of Disability Pride Month is to honor everyone’s differences and uniqueness by raising awareness and breaking stigmas. Making people with disabilities visible in all communities.

Needless to say this is something we all need. If you follow me, you know all about my story so I won’t repeat that here but I just wanted to show my disability pride by saying my disability is one of the best things that has happened to me. I know that may seem weird to say but it’s true.

No matter what other path my life went on I wouldn’t have the self understanding or love I have now if it wasn’t for Pseudotumor Cerebri. I wouldn’t have been able to explore all the things I love writing, public service, tea, my business. Without my disability I wouldn’t know exactly who I can trust and depend on. I wouldn’t know how strong I am. If I wasn’t disabled I wouldn’t have the house I live in or enjoy the things I do such as gardening, meditation, fishing. I wouldn’t understand how important the little things in life are. I wouldn’t be me without my disability.

My disability isn’t just apart of me, it’s who I am and no matter the amount of pain it causes, the hassles I go through everyday, the blood, sweat and tears it drains, It’s me and I am proud of that and proud of how it’s shaped me. Proud that I understand that like my illnesses all things work out for my good and that even bad things can be blessings. This month thank yourself for enduring and thank your disability for the positive things it has brought you no matter how small. This month share your story and show people why we should be included, why we should fight to end abelism and fight to shatter the stigmas.

We are disabled but we are here, we are able and deserving and we are proud!! Keep enduring warriors.

I just had my 13th surgery and 5th brain surgery. Every time my pseudotumor cerebri is out of remission and I have to have a surgery, it brings up so many feelings. I try and stay calm and collected until they roll me into the operating room but I go through being nervous, scared, anxious and even happy. The most complicated feeling is the luck I feel.. 

I feel lucky because honestly who endures, survives and thrives after not only 1 but 5 brain surgeries. That doesn’t seem like it can or should happen. So much has me in my feelings after surgery. I ask myself and God why me, why I am blessed enough to survive but also why should I have to endure it in the first place. I’m happy it’s over but sad because I know I’ll have to go through it again. I feel guilt because I know there are people like me going through the same thing and some of them don’t make it. 

I should only feel blessed because of that fact but not always. Having a chronic illness that requires you to have multiple surgeries in your life just to manage is so hard. Feelings are all over the place. You’re happy in remission and then happy to be getting brain surgery again because it means less pain. You’re empathetic to other people but know that what you’re going through is probably worst. You know what it’s like to live the hardest day of your life over and over again because you get to endure the same pain daily you went to sleep with.You know the loneliness of no one else understanding these feelings. You know the pain of joking with the operating room nurse you had on your last surgery. You look at your scars and can’t believe you survived that pain, that left it there. You fall in love with your illness because it made you who you are but hate it at the same time because of what you’ve been through. Knowing that you have to live with these feelings, with the pain for the rest of your life with no cure can be heartbreaking everyday.

What has helped me to deal is remembering that even in the battle, even with the things PTC has taken away my life, I am a Miracle. Waiting for a cure, remember your journey is a miracle. We are lucky, Lucky that we get the chance to use what this illness teaches us. Lucky that we get to see the true strength of our mind and bodies. We are blessed to be able to understand the limits of our bodies. Blessed to be able to feel all these feelings and understand them. Blessed to be able to know who truly supports us and will be there. We are miracles that we get to comprehend how precious life and small moments are. People who endure chronic neurological conditions are miracles, we are blessed and lucky to survive all that we do, and we will keep being miracles and sharing our journeys to bless others.

I realize now although the feelings that come with pseudotumor cerebri and any other illness like mine are all consuming and confusing, they are mine and they are valid. It is okay to allow yourself to feel it all. No one survives what we do, accept for us.  

I wish you enough and want you to be well!!

Throughout this health journey of mine I’ve dealt with it in ways that probably only make sense to me. For example, when I was first diagnosed with Epilepsy and then shortly after with Pseudotumor cerebri, I had what I called sad realization moments. My first sad realization was during a 72 hour extended eeg with about 50 probes stuck in my hair, I came home from the hospital trying to get undressed and was so weak, so confined with the probes  that I couldn’t take my own shirt off. I cried. 
But all of my realizations were not so futile. Another time I woke up in the hospital after a laminectomy and couldn’t move my right leg, Big Sad Realization moment in my battle.Running into the vacuum was a sad realization too where I realized I couldn’t see in the dark anymore. The sad realizations helped me, although they made my mom sad, noticing things and mentioning them, even laughing at them helped me process the tons of things that were happening to me. It’s funny sometimes I felt like a spectator to my own life. As my journey went on there were less and less sad realizations because let’s be honest my entire life was a sad realization. I was at a point where mostly I went to doctors appointment, slept and needed helped to do anything but a couple months ago, I had the biggest sad realization I have ever had…. 
Sitting in my room, trying to figure out how I was going to be able to go get my nails done. I know my nails right, but Shane was working, my mom was working and they don’t like me using uber or lyft by myself. So I was stuck, I didn’t want my man who works very hard all day to take me when he got off because he was tired and I knew my mom was too.So I was stuck, and sitting on my bed was the first time I felt stuck in my situation, stuck in the house unable to get up and go if I wanted or needed to like normal adults.And the sad realization hit me like a truck, I will never be able to drive again. 
Now I’m sure some of you are thinking now Unique you haven’t driven in a long time, why now is it affecting you? You’ve had visual issues for awhile you had to know that right? Well yes I haven’t driven a car since december 2014, yes I have significant vision damage that keeps me from seeing the tv, let alone seeing enough to drive a car. I’ve even heard my Neuro-Optamologist say I’d never drive again but in this moment it just hit me, it scared me.Here I am thinking about when I have kids, if Im home alone with them and they need something, I can’t drive and provide it for them. This sad realization hurt me. 
After a 2 minute break down and talk with sounding board. I pulled myself together and realized that I have people willing to help me get around this never ending obstacle in my life and that is what is important. A friend reminded me that this whole battle i’ve been adjusting and adapting, enduring and I will learn how to do all those things when I have children as well, even if I can’t. 
I write all this to tell you guys, it’s okay to laugh at yourself and your situation, it’s okay to notice and even cry about those sad realizations in life but don’t stay there. Cry for a minute, if you need and whisper to that realization, “I see you” and let it pass. Adapting, adjusting and enduring is apart of life and we can all get through it no matter how sad, no matter the obstacle or realization. 

I wish you all enough

Hey Guys, I missed writing my blog but I stopped for awhile to focus on writing my book and getting Enduring Minds The Foundation all set up. Don’t think that since I’ve been gone a lot hasn’t happened because I’ve been busy! In the time that I’ve been away I bought and moved into my new home. Also gotten engaged!! Now I am planning our wedding that is coming up soon this November.

But not just wonderful things are happening in my life, I’ve also been in A LOT of pain lately. My lower back and legs hurt everyday anyway from nerve damage, spinal taps and back surgeries but in November of last year the pain was different. My back would ache and sting and then a sharp pain would shoot down my legs and then they just tingle to the point I can’t sit or lay still. It was terrible but I ignored it because when you’re in pain everyday you don’t know if its a new pain or just a bad pain day. Then I noticed that the pain kept coming more and more frequently and still I ignored it.

I kept ignoring the pain until it got bad enough that I couldn’t and it wasnt frequent anymore but everyday. If I’m honest I didn’t want the pain to be anything new because that meant doctors visits and test, things I dont want to endure more of, especially not right now. Not while everything else in my life is going great. I wish I hadn’t ignored it though. After months of putting it off I notified my doctor of the problems I was having an he ordered an MRI. The MRI showed I still have a slow CSF Leak and a pinched nerve from what doctors called Failed Back Syndrome. Failed Back Syndrome is a collection of symptoms people who have had multiple spinal surgeries can feel.

A CSF Leak is when your Spinal Fluid leaks either into your spine, out of your nose or ears. Cerebral Spinal Fluid or CSF starts to leak from damage to your brain, a hole in the dura or from a torn or broken shunt, which is more than likely how I have one. I had a csf leak before which we thought was repaired but maybe it never healed or it reoccurred but it’s there and I could’ve gotten medical attention on it months ago if I had paid attention to my symptoms. If I hadn’t ignored them. Getting test for things is so important because you may get helpful information. For Instance whenever I bend over my nose leaks. From the MRI, I know it’s probably Spinal Fluid. The wetness on my ear in the mornings is more than likely spinal fluid, the neck and shoulder pain I have is a sign of a csf leak but because I’ve experienced these symptoms for so long I didn’t validate them.

I am boring you with my story to say no matter how small the symptom, no matter how little it occurs, no matter the pain you’re already in, Pay attention and tell a doctor. It may be nothing but it may be something bigger happening that you have no idea about. Keep a pain journal noting down the symptom, how often it happens and how long it last. Take that journal with you to medical appointments, And tell a doctor. Then research it yourself so you can always know what is going on in your body. It may make future diagnosis easier.

Its despairing that you can be in so much pain everyday that you may not even recognize a new symptom but that is a haunting reality for us who endure chronic pain and illness but if were vigilant with our bodies and honest about our pain, I think we’ll be okay. They say Pains job is to let you know you’re alive, I guess It’s doing exactly what its meant to.