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.

 

Epilepsy

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!!

The new normal

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

Thankful

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 .

Making Peace

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.