Disability Pride Month

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.

Feelings

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!!

Sad Realizations

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

Symptoms

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.

Yet another seizure

A week ago today I had a seizure. The first seizure I’ve had in 9 months and it scared the hell out of me.

I guess those of you who know me are wondering why it scared me so much it. I mean we all know it definetly wasn’t the first time. Well, I think it scared me so much because it came out of no where. Those unchallenged by epilepsy will never know the fear that comes with waking up and not knowing where you are or what happened to you. Not knowing how much time you’ve lost track of.The terror in not knowing if you’ve lost control of your bladder in front of strangers. How hard it is to lay there with an audience staring at you, watching you at the most vulnerable time. Fear that your mom or your man who know your illness best won’t make it to you in time. The terror knowing the chaos you’ve caused. The thought of the judgement you know people are giving you. Hating The attention this flaw of yours has to have.The embarrassment of what you consider to be your  fate in the hands of someone else because you can’t communicate for yourself. Not wanting to tell anyone that you yet another seizure because you don’t want to hear them say”what? Again?” It sucks. And let me tell you, it’s humbling.

I think another reason this time scared me so much is because I’ve felt so much better lately. And then boom, hanging out with a friend I fall out and have not 1 but 2 seizures in the middle of her business. When you have epilepsy you learn to explain your condition to new people in your life but it doesn’t mean much at least not until they experience it with you. It’s that way with employers as well. At an interview do you tell them that at any time you can start convulsing and interrupt a normal productive work day at their establishment, oh and that’s not all because after that  you’ll be out of commission for Lord knows how long? Having epilepsy leaves you with impossible decisions to make and a hard way to live in fear of when the next one is coming.

But everyday I’m choosing to not live in fear, to not be afraid of this monster called seizures that I carry with me all the time. Despite how people react I try to prepare everyone I’m around anyway. We can’t be ashamed of something we can’t change about ourselves. I have to constantly remind myself that yes it will happen again, it may be tomorrow or it may be in 2 years but Im going to enjoy what I can while I can. I push that fear to the smallest place in my mind and I endure.

If you know someone with epilepsy learn what their triggers are and what their needs may be in the event of a seizure. Also learn as much as you can about their illness so your more prepared to help them. My friend listened to me and was able to get me help when I needed it most. If you endure this monster like I do, don’t be afraid to tell any and everyone your around about what your needs are and what they need to do to help you should you need it. It is humiliating and it feels like your a burden on those people in your life but honestly what other choice do we have. Not telling them could mean life or death for you and no form of embarrassment is worth that.

After a week of resting, Im starting to feel like myself again, I just have to keep working now to put that fear to bed.

 

The Cloud

Right now I am in this weird place. This place where everything is going well, I’m feeling a bit better but I cant fully enjoy it. I cant enjoy it because I see the cloud hoovering up above. The cloud where your waiting for the other shoe to drop. When you have a chronic illness even when your better you know its just a matter of minutes,hours, days or weeks until the feeling better turns into feeling worse.

I know when people read this they will immediately comment “You should live in the moment” or “don’t think like that.”One of my favorites that I hear all the time is “Have faith that its over.” But how do you do that when pain is all you know now? How do you not think about that when your going through this never ending cycle again for the umpteenth time? How do you enjoy the better when you know that worse is around the corner? Its one of the hardest things in the world to do. And it is even harder for people who do not know the feeling to understand.

Now I’m not saying that I don’t go out a little more than I normally could or that I am not taking extra steps out of my wheelchair and that I don’t have a brighter smile I do, but I do those things with that cloud in the back of my mind that it’s only temporary and there isn’t a damn thing I can do about that. I think that is what makes chronic illness so hard to deal with, the lack of  control in your life. The lack of being able to feel better for more than 10 weeks. 10 Weeks which will be followed by a year of hell. For some its not 10 weeks just a couple of hours.

I hope that those not enduring chronic illness remember that when their chronically ill family member of friend looks better but still just says their okay. or I’m fine. And I hope those who endure everyday remember that no matter the cloud luring, no matter the amount of hell coming or how short the better is now , we should still be thankful for it.

Insecurity

I read a quote the other day and it said “Dont let insecurity ruin the beauty you were born with” Now I do not know who said that but it raised the question of what to do with insecurity when your health ruins the beauty you were born with?

With conditions like mine it, things our body has to go through can alter our appearance. If your pressure is high your face is fat, your eyes red and puffy. Certain medications can make our entire bodies bloated. Surgeries we have to have can make our hair fall out or leave us bald with long scars up our backs and stomachs. Eye surgery can leave our eyes in total disarray. When you cant change things about yourself and you know that the condition causing  it will ever go away, those little insecurities turn into bricks that you tug around with you.

For me I am most insecure about my eyes. After my eye surgery, one of them now rolls, the other looks lazy and they are almost always red and swollen. I hate it. Now I laugh about it and cover them up but nothing changes the fact that they will never go back to what they were. But everyday I look at myself in the mirror and remember that I am beautiful lazy eye and all. It helps my confidence that I have a man who finds me beautiful even at my worse. Then I pray for the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference.

I did not write this post for sympathy or for anyone to comment on how beautiful I really am despite my rolling eye balls, just to let the people who endure through thicker insecurities then mine know they are not alone. Also know that real beauty comes from when a woman knows her flaws, embraces them adjust her crown and carries on.

 

Dear mama

Dear Mama,

I am sorry, sorry that you ever have to read this letter. Im sorry that you were chosen to be the parent of a child that has not one but two chronic illnesses. I am forever apologetic that your social and professional life regularly gets paused for things we cant control. Things like emergency room visits or urgent doctors appointments, trips to other specialist and the worse of them all surgeries. Mommy I am sorry for all of the waiting and for the endless paperwork. I’m sorry that I cant just be your daughter and best friend but your patient most times too.

No matter how much physical pain I am in it is always heart wrenching for me to see you. I see you hurting internally but trying so very hard to hide it. I see you struggling to stop your tears when talking to yet another doctor. I see you not do things you want or need to do because of me. I know the physical pain you’re in as well from lifting me off the ground once again. Your child is grown, she is supposed to be working, out of your house and not dependent on you anymore, but that is not our story. While your friends are babysitting their grandchildren, You’re stuck at home babysitting me.

This open letter to you isn’t just to apologize but to thank you. Thank you for choosing to stand with me. Thank you for all the things you take care of when I am not able too. I want to tell you because I don’t say it enough that I appreciate you. And I appreciate you putting your life on hold for me. Thank you for fighting for me when Im too tired to fight for myself. For every Surgery, Doctors visit, emergency room visit, meeting, and all the paperwork I am internally and forever grateful. I do not know why God chose us for this journey but I am so glad that he chose you to walk it with me. As hard as its been, the memories made along the way have been tremendous! Thank you for those as well.

For my chronic Illness Warriors I hope you have someone in your life as I do for support. If you do please don’t take them for granted. Make sure to thank them and love them with all your might.

I love you mama

Pain for the Holidays

Have y’all ever been in a place where you  want something you cant have. Well that’s where I am at. I want my body to be at rest, To have some peace, some stillness. I would love to be able to sleep, at least more than two hours. I want to be able to go Christmas shopping with my mom without feeling like I’ve been hit by a truck after being awake for 48 hours. I want to enjoy the holiday without assistance, medication or devices but I cant have that.

Instead I get to be exhausted in more ways than one, sleepy and in more pain everyday. On top of that I’m starting to drop stuff. Twice I have spilled my Ice Cold water all over Shane and across the table out to dinner. Even when I am sitting still I feel like my body is trembling, and at night all I do is lay in darkness. I don’t know if its the ringing and swooshing in my ears that keep me awake or the never ending pain or the caffeine supplements I have to take religiously but either way I am just up. If I am upright for too long my appetite decreases, ugh it seems like the closer we get to this next surgery the worse the pain gets.

I think I cope pretty well though, on the bad days I push through it and you would never know, on the really bad days I listen to my playlist so that emotionally I can handle it and on the terrible days when I have stuff to do I have started doing pain meditation. There are some guidance videos on Youtube, using those help me focus and block out the pain to get through everything I need to. On the unbearable days I just stay in bed.

Although I wont get the one thing I want for the holidays it will still be a great one in spite of all that I am going through . If you have a loved one who suffers from chronic illness or pain remember them this holiday season. Keep their illness in mind when buying gifts for them, remember that what is easy for you to do is probably 10x harder for them. Be courteous and keep any accommodations they may need in mind. Also keep others from talking negatively about anything your loved one needs to do for them to be okay.

You chronic pain warriors put up the fight this holiday season and lets not let our illness win. Also although your family and friends may know they may also have no idea what you need to make it through the day so tell them. Lastly and I’m still learning this myself, only do what you can, everything else will be there later!! Merry Christmas to Everyone and Happy Holidays. I hope it is beautiful,  painfree and filled with love.

 

Validation

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.