Too Little Answers & Questions Left Unanswered

I thought things would be easier after my diagnosis, I thought the first year would be the hardest just getting used to the fact that I had MS and adjusting to everything that meant. But that's nothing compared to this.

I never wanted MS, who does? I wanted answers and the diagnosis of MS gave me answers, all the answers I needed. Things finally made sense. I didn't fully accept the fact that I had MS because I don't think that's something you ever fully accept. But it's something you learn to live with because it means you're not crazy and what you are going through is real. It made everything seem okay. But now my diagnosis of MS is unsure and I'm left with no real answers.

In the past I've put my life on hold waiting for answers. I'm not going to do that anymore because I've realized I may never have definite answers. I may never have a definite diagnosis of MS, for now on it may always be a "possible MS" or it could be some other illness. All I know for sure is what I'm going through and my symptoms. I know those are real. It's still hard though, not having answers to my questions. At times I'd like nothing more than pretending like I'm fine and nothing's wrong but I can't. I may be tired of being sick and having no answers but I will make it through. One step at a time, even if my questions remain unanswered. This is just one twist in the road that I didn't expect.

I feel so broken. I keep thinking a lot about my counseling appointment on Wednesday. My counselor asked me what I liked about my Cognitive Psychology class the most. I liked everything about it but I really liked being able to apply things to myself. The first in particular meta-cognition, thinking about your thinking. I was tell her about this puzzle we had to solve in the beginning of the year and how I was too focused on parts of it that I couldn't see the whole thing. I realized in order to solve it I had to look at the whole thing.

Then we applied this to my life. She brought up a point that's kind of been stuck with me. I've been so focused on figuring out whats going on with parts of myself, I haven't looked at the whole picture. I've had problems with my central nervous system, my ovaries and menstrual cycle, had two organs removed (granted--I didn't really need them anyways) and some other things. I've always focused on making on part of my health better at a time but what if I going about it all wrong? What if it's not just my central nervous system....what if there's something wrong with me all around?

All or Nothing

I've never had a good relationship with my mom, well at least as far back as I can remember. And I can really only remember my time with her starting when I was in 5th grade. 5th grade happened to coincidentally coincide with the first time I realized my mom was an alcoholic. I never really felt like she was there for me.

Even now, it's like she only wants to be around for the happy stuff and when things get rough she can't be bothered. She shouldn't get the option to be around for just the good but for some reason she seems to. That's not fair to me, I don't get the choice to poof myself away when things get bad and simply enjoy the good. She has to be there to support me for the good and the bad. She has to be there for it all. But I don't think she can which doesn't seem to bother because she doesn't really support at all. So when it comes down to all or nothing. I think she already made her decision, as hard as a realization it is for me. I'm letting go of the fantasy of her being a real mom. Because she clearly chose nothing.

Well today a dipstick test revealed that I don't have a UTI. I was really wishing that this was all just a UTI but it looks like that isn't the case. I contacted my neurologist, I'm waiting to hear back. The words incontinence and urologist left my primary doctor's mouth. I'm doing all I can to deal with everything that's going on but things are so hard. I'm not sure what to do anymore, I'm reaching out for help but it just doesn't seem to be enough. I'm twenty-three this all feels so wrong.

And to top it off, my dad is in the hospital again and my mother is a basket case. She's yelling at me saying I don't do anything and everything falls on her, lies but whatever. I'm so sick of listening to her. I'm the one she turns to blame when things go wrong.

I'm tempted to push back my graduation date a semester. I know things aren't always perfect and there is always going to be rough patches but I'm just so stressed out. But then again whose says that the next semester will be any better. I just don't know what to do anymore. I'm just so tired.

I'm 23 and going to bed at night hoping to make it through the night with NO accidents. That kinda puts things into perspective, just a little bit. Okay maybe A LOT. Here's to hoping this is just a UTI and nothing more serious.

What's the greatest chapter in your book?
Are there pages where it hurts to look?
What's the one regret you can't work through?
-Mine Would Be You by Blake Shelton

Your knuckles are bruised from a losing fight
One way down a dead end street
Broken glass underneath your feet
You think the day won't break the sunless night
I've been in stuck in a storm before
Felt the wind raging at my door
Couldn't move, couldn't breathe, couldn't find a way out
Somehow my clouds disappeared
Somehow I made it here
-The Sun Will Rise by Kelly Clarkson

Do you ever find a song and just listen to it as you walk? It feels like the soundtrack of your life. You can listen to it play and see your life unfolding with the words. Well these are mine, they seem to really fit my life lately. 

Hold on Tight

You know that bar in front of you when you're on a roller coaster that we seem to hold onto for dear life. It's almost like a safety blanket or the protective wall we put up. We hold on so tight when we are going up, coming down and being flipped upside down. But we tend to loosen our grip when we think the ride is leveling out for a while. 

I think that's when we need to hold on the most especially in life. But how do you decide when its okay to loosen the hold or make your walls a little thinner? Things change constantly and suddenly.  You may think all the twists and turns are gone but then there is a sudden flip that wasn't anticipated it came out of nowhere. So at what point do we decide that we feel safe enough to leave ourselves open to the unknown? How do we know we are truly strong enough for that? I know we will always need a sense of security because we always need a little something, a little reassurance. Maybe its just taking the risk and if you happen to get flipped upside down, you take things as they come. You know you will survive, you just might not be okay right away but eventually you will be. So do we continue to hold on tight forever? Or do we decide to loosen our grip and manage through the ups and downs?

At times it feels like I'm being pulled into a thousand directions. Its these times that I consider giving up and throwing in the towel. Its these times I think of just letting the MS or other unknown health condition win but I don't. I do take a step or two back though. Usually in this time I fall to pieces, cry and give into the unknown which is something I said I'd stop doing. I can't control the unknown.

I've been thinking lately I'm so much more than a person who has MS residing in her body. I'm more than a girl with MS because that's such a very small part of me, minuscule really. I thought removing that piece everything else would fall apart but I'm not so sure about that. I'm more than a girl with MS.  I'm a future educator. I'm a best friend. I'm someone who dreams of changing the world. I'm a mentor and a helping hand. I'm someone who enjoys bringing laughter to others even if its telling them a story of something I did that was ridiculously stupid. I'm all that and so much more.

MS or not, I'm still that person.

I found myself after I was diagnosed with MS. I want to say that to some extent I've always been happy in different areas of my life. It's just that my life always felt so like it was broken into pieces. I was happy in parts of my life but not my life as a whole. But after I was diagnosed, I felt this sense of relief to finally have answers. I was in denial at first but that passed and I was sad about the situation. Over a year after my diagnosis, I finally found that I was in a good place. I was happy with my life, school and for the most part my health. One day, one hour seemed to take that all away. I don't think I really lost myself but it feels that way. I think its more that I lost my sense of stability and certainty both of which I think were holding things together.

So now I'm trying to find myself without answers, trying to make sense of my life when there are unknown factors. I need to get myself back to that good place. I came to realization in June that:

 "I officially embarked on this journey one year ago today but I think I've really been on this journey my whole life. It's not a new journey or even a new story just a change or added chapter in my life." from http://mattersoflifeee.blogspot.com/2013/06/letting-go.html

I'm sticking with that realization now. This is merely a change or added chapter in my life, it's not a welcomed chapter or one that I would expect like the chapter where I meet a guy, fall in love, get married, or even have kids. This is an unwanted chapter but I know I will grow from this experience. I'm trying really hard to make it through this rough patch but not without help.

So ready? Picture this. You are nowhere close to being where you pictured yourself at this point in time but that's okay because you've become okay with where you are. Now picture being picked up by a claw like one of those claws in the game machines at the board walk. Imagine that claw taking you off the path you are on and going backwards one too many steps and dropping you there.

That's how I feel. I've been dropped back into a place I never wanted to be let alone a place I never expected to be again. I'm not even sure what to do but cry. So that's what I've been doing, lots and lots of crying. Everyone seems to want me to be happy about whats going on. And I want to be happy but I can't be happy about this because otherwise I feel crazy. Life was so much easier with answers.

When is enough....enough?

It's not my fault. That's what I keep trying to tell myself. It's not my fault that I can't get her to understand. It's not my fault that I can't get her to listen. But it hurts and it's hard. And you can't get someone to listen and take things in when she doesn't want to.

It's like situation after situation, she talks to everyone BUT me. She listens to everyone BUT me and thinks that what works for other people will work for me. There's one piece she is missing or ignoring. MS is NOT the same for everyone and not everything works for everyone. I'm so tired of trying to explain it. I want her to understand, I really do but I'm so over dealing with this. I really don't even feel like trying to get through to her anymore. I really don't even want to talk to her about it anymore. Maybe that's bad but I've tried, I've done what I could. It's going to have to be enough.

Turning Point

As I talk to others who are approaching their one year point since being diagnosed I've realized something. After I reached my one year mark everything changed. I stopped counting the days. When people ask me how long I've been diagnosed it has become a little over a year because I no longer know the exact number months like I once did. I turned a huge corner on the one year "anniversary" of my diagnosis. I know I'm no longer putting deadlines on being okay with MS. But I'm wondering if I really just needed to get through the one year mark to begin accepting and healing. Was my one year my turning point?

Day Two

Do you know what's funny? Walking into walks is kind of funny. I'm onto my second day of being dizzy..it's no fun at all.

There are so many unknowns in life. Many seem horrifying. I'm scared and this time it's not for my health. I hate not knowing what's going on. I hate being left out. I know you say everything will be okay but it doesn't feel okay. I hate living with unknowns. And I know I complain way too much, it's just I've been through so much. I've made it through, I'm trying so hard to be strong but it's all too much. I need answers and I know I won't get them. I'm trying so hard just to focus on school and forget everything else that is going on but I can't. I've debated going back to counseling but I don't want to use that as a crutch. I was doing so well out of counseling, I feel like going back would be a step backwards instead of forwards. I feel like I need to be strong and do this on my own. I'm just not sure if I can.

The Girl.

I'm the girl that would rather stay in on a Friday night then go out to a bar. I'm the girl that loves doing her hair and getting dressed up in a cute dress. But I'm also the girl who would so much rather be in sweats and a big baggy shirt or sweatshirt with her hair in a messy bun. I'm the girl that believes and wants that happily ever after but deep down knows that happily ever after doesn't exist. I'm the girl that could stay buried in a book or multiple books for a day on end or days. I'm the girl who loves to make people laugh and see them smile. I'm the girl that is a hot mess more than half of the time. I'm the girl that needs to be reassured over and over that everything is going to be okay. I'm the girl that needs to hear that she is loved. I'm the girl who doesn't feel like she belongs anywhere most of the time. I'm the girl who has the biggest heart in the world. I'm the girl that finds it hard to trust because she has been hurt so many times by the people closest to her. I'm the girl that cries during the sappy romantic movies and books. I'm the girl that will worry herself silly about anything and everything.

I'm the girl that wants to make a difference in her students' lives'. I'm the girl that plays it safe. I'm the girl that loves helping others. I'm the girl that wishes she had a better relationship with her mother but has stopped trying because deep down she knows it's a lost cause. I'm the girl that is learning to fight for herself and what she deserves (baby steps anyway). I'm the girl that really just wants to be loved. I'm the girl that loves to plan and organize. I'm the girl that hates change but is slowly learning to accept it. I'm the girl that once she has had time to let a bad situation sink in she tries to turn it into a positive. I'm the girl who is trying to forget about perfect and live life imperfectly. I'm the girl that loves soaking in a tub filled with hit water but will settle for luke-warmish because of the MS. I'm the girl that will eventually have her own  happily ever after imperfectly. I'm the girl that paints her nails to relax herself. I'm the girl who loves blasting country music while she cooks. I'm the girl that more often than not feels like the biggest disappointment. I'm the girl that will surprise you and make you think twice.

I'm that girl and so much more.

Hate

That's a strong word right? I've heard so many times don't use hate it's such a strong word, use dislike. This isn't a dislike kind of situation. I hate my mom. Screamed it at her this a few minutes ago actually while slamming my bedroom door shut. She doesn't care or listen.

I made an appointment with an eye doctor this morning. I was telling my dad then he asked for the phone. I said I'm calling the specialist I'll give it to him when I'm done. My mom turned around and asked what specialist? I said the MS specialist. She says you're really going to go through with that, he isn't going to be able to do anything for you. So I slammed the door shut and screamed I hate you.

I don't really feel sorry for that. I don't really know what to feel now.

It's one of those moments

Those moments when I realize it's okay to cry. So I do. Just like I did last night. Things will get easier. Maybe not right this second, or tomorrow or even the week after that. But eventually things will get better. They have to.

What I've gained..

I was standing in  my room this morning getting ready for work. I was wishing I could wear these really cute white wedges to work with my blue and white polka dotted dress. Instead I'm wearing white flats because the MS is messing with my balance a little more than usual as of lately. I keep thinking about all the stuff I've lost because of MS and what it's taken from me. Like my sense of stability in a way. I don't plan as much anymore, it's more like do stuff when I can. My life is full of unknowns now. Like when something might happen. I was at work and out of nowhere part of my face feels like it's on fire. I keep thinking of everything I feel like I've lost due to the MS.

Then I realized what MS has given me. Because of MS, I found MSWorld. There are four women that I have become extremely close with. If not for MS or MSWorld I would have never met them.

So now I'm trying to think in terms of gains, not losses. I've gained four amazing friends, I couldn't imagine my life now without them. I think we each bring our own little something to the friendship and we balance each other really well. I'm so grateful to have them in my life and so grateful to have the chance to be in theirs. I know we will all be there for each other. Whether I'm having a bad day, or one of them is having a bad day, or we just need to fool around and laugh. We will always be there for each other. That's a great feeling, knowing that they will always be there for me and that I will always be there for them. So today I'm looking at the MS in a new light. In a light of gains and I'm thankful for it. As crazy as that may sound.

Will good out weigh the bad?

I know I talk about this way too much but its hard when everyone around you is in a relationship or is having a baby or has a baby. I know my time for that will come eventually. I say know instead of hope because I've been hoping and so many people have told me it will. So it has to happen right? I hope so. There's hope again.

I guess I just don't think it will happen for me cause I feel like damaged goods. Most people my age just worry about meeting someone and falling in love. I worry about meeting someone and falling in love but meeting someone that will accept everything that comes with me. That means the MS. The MS symptoms, the fun MRI's once a year, the medication (currently unknown-since I'm most likely going off the Rebif), my meltdowns when I'm scared and upset. And oh so much more. But I mean with all that negative stuff I come with some really good stuff. I'm told I'm really sweet, I love cooking, I'm a loving person. I guess I just worry that the bad will over take the good.

I know life isn't always butterflies, cup cakes, and rainbows. I know there always bumps in the road. And you are always going to have to climb some mountains but I'll take some small ones. I know everyone says if a guy can't accept all of me he isn't worth it. I just hope there is someone out there who will.

It's hard to admit that something might be wrong with you. Specially when you already feel broken and feel like your body has already betrayed you. It's scary to know that something else could go wrong. I'm once again having issues with my cycle. I have no idea what's going on with my body but something is going on. I ignored it once then faced it and really didn't get any answers. I mean that's good right? Because they didn't find anything wrong. I just can't help but think if it's happening again something can't be right.

I'm just not sure if I could handle if my world turned upside down once again.

That don't impress me much!

Your jaguars, your land rovers, the fact that you speak a million languages, that fact that you think you are going to be in congress or even the president someday. That's all great for you but I don't see me fitting into your "world".  We are so different and it hurt so much when you laughed at my suggestion that you just leave and go home instead of staying and hanging out with "pot heads".

I don't care about fast, flashy, expensive cars. I'm not going to agree with you or go along with something just to make you happy. I also am not putting myself into situations that I'm not comfortable in just to make you happy because I don't think that's right.

My future husband  is going to drive a truck and it won't matter to him if the only thing I can say in another language is "Donde estas mis pantalones?". He'll love me for me. He won't try to force me into trying things I'm not comfortable with.

I guess I just want someone who doesn't make me feel stupid and someone that I can be me around and not someone else. I'm sorry if you thought we hit it off after talking for like 30 seconds. Maybe you were just falling back into a crush from days long ago. But those are days I'm trying to put behind me, you can stop trying. It's not working. It's kind of funny though cause I don't even think you were trying and think that's just you. They say opposites attract but I'm running. You'll find someone that is as crazy about you as your flashy lifestyle and your potential to president but it's not me. I'm sorry.

So I've been through some scary experiences in the last two weeks. But I think my eyes were kind of opened when I went to bed hoping I'd get up the next morning. (That's probably super dramatic.) Well I woke up today thumbs up!

Every Moment is Unknown

It's Friday morning, you are really excited because you are going shopping this morning for some new clothes and really cute sandals that you've been wanting. Then you go out to check the garden, you realize your asparagus plant is finally producing. It seems like the perfect start to an awesome weekend. Or so you think.

You get to the store, they don't have your sandals in your size. Okay not the end of the worLd because you find another pair that's just as cute. You look around for some new bras. You happen to start looking at people and their faces look weird. First you think well it's only one person whose face looks messed up. Stop staring at them, it's not their fault they have a messed up looking face. Then you realize everyone's faces look messed up. So then you go to text your best friend, you cant see the letters completely. You also can't read the signs in the store.You keep shopping or trying to anyway because you were so excited. But everything is a blur, then it's like your head has been struck. A sudden sharp pain through your head that doesn't leave. The pain only gets worse. You decide to leave but its too late by the time you get home its all you can do but go lay down. That's when the tears start pouring out, it hurts so bad and it seems like there's nothing you can do.

You take the pills your doctor gave you once your dad called your neuro and told him its a migrane take the pills. So you do at 12:30. You take them again at 4:45. The last dose didn't help you figure why take it again if it's not going to help so you don't. You're in lots of pain when 11:00 rolls around and your dad gets home from work. He tells you to take another. Then only after he realizes that you are in a lot of pain and have being waiting out this migrane for over 12 hours does he decide its time for the hospital.

The ER doctor tries one medication but that doesn't work. It's only after a dose of morphine that you begin to feel relief. You lay there in the bed so happy the pain is subsiding but so unhappy at how the day turned out.

You hope that you never have to go through this pain again.

Double Trouble

It's bad enough when you have problems with one eye but throw in two. This has been I have to say in my top 10 most scary experiences. Going from being able to see perfectly fine, then everything is super blurry. You think maybe its just cause its getting dark out and some people are smoking. But then you move inside because maybe you're over heated? Okay, so you cool down... still nothing. Okay so your eyes are blurry and you start to get used to how the world looks like that. That is until you get home, lay down to go to bed and grab your book because you like to read before you sleep. Your eyes are legitimately blurry and messed up because the words on the pages are insanely hard to read. Break down time.

I've never been so scared and afraid in my life. My eyes still blurry as I write this but I haven't hit the 24 hour mark yet so I'm hoping it will go away before that. Otherwise, I may be in big trouble. :(

Could It Be...

So as I sit here crying I wonder...

"What if all this change wasn't for the better?"

I have no idea

Ever feel like you have the world on your chest? Or maybe a hundred pound weight that prevents you from breathing? It's an awful feeling. It's basically overwhelming. That's how I feel right now. I don't have the slightest idea why I'm feeling like this right now. And all I want to do is cry.

Some Randoms..

I've been listening to these two songs non-stop on replay. There's something about them that connected with me and parts of them really say how I'm feeling. First is a song I heard on the new tv show Nashville called Ho Hey which was originally sang by the Lumineers.

I really connected with these lyrics.

(Ho!)
(Hey!)
(Ho!)
(Hey!)

(Ho!) I've been trying to do it right
(Hey!) I've been living a lonely life
(Ho!) I've been sleeping here instead
(Hey!) I've been sleeping in my bed,
(Ho!) I've been sleeping in my bed
(Hey!)

(Ho!)

(Ho!) So show me family
(Hey!) All the blood that I would bleed
(Ho!) I don't know where I belong
(Hey!) I don't know where I went wrong
(Ho!) But I can write a song
(Hey!)

Then there's the song Better by Maggie Rose which I heard while laying out in my backyard trying to get some color. I really connected with these lyrics too.

But that's a road I don't wanna go back down
And I hate myself for what I'm thinkin' now
Hey, it's just one night, it's not like it's forever
I just want to feel better

I just want to feel good, feel alright
Feel anything but what I feel tonight
I just want to move on with my life
And put the pieces back together
I just want to feel better

I'm not sure why but these parts just feel like me. I feel so lost and confused at times, so unsure of where I belong. Then there's the second song which makes me think of the MS and the side effects from the Rebif. I know this song was about a broken up relationship or at least that's what I'm led to believe but these parts describe what I'm going through. I really just want to feel better and move on with my life. I know it's going to take time and that's hard but I'm in it for the long haul.

Just another test....

It should have been just another MRI. At least that's how it felt at first, but it wasn't. I'm not sure if it's because this is the first MRI I've had since I was diagnosed or what the reason was. All I know for sure is that it did not feel like just another MRI today.

Maybe it's because of the response I gave when the nurse asked me what the reason was that I was having this test done today. It's the first time I've responded by saying "I have MS". At least for an MRI or test. It's always been "My doctor thinks I might have MS" or "I'm being tested for MS" NOT "I have MS". She almost seemed shocked, she didn't know how to respond at first.

Then she proceeded to ask the normal questions: "Any chance you could be pregnant?", "Are you wearing any metal?Earrings?Any piercings, etc?". Nope. "You've done this a lot haven't you?" "Yeah, I'm a pro at MRI's now", I laughed back.

I laid in the MRI machine listening the to noises. One was a cross between a hammer and a wood pecker. Another I pictured the noise from Mario when he is running around collecting all the coins but doesn't earn the star. I tried to give a picture to every noise but couldn't.

This MRI was definitely different for me. I'm hoping that even though this experience was different that maybe my MRI stayed the same. Wishful thinking?

I found these pictures I call them old pictures. They are probably go back to 2005 or 2006. My hair looks so blonde and curly in this picture. Then next picture my hair is so brown (my natural color) and straight, such a difference. 

And then there was the model phase. Oh craziness. I thought I wanted to model so bad. My friends and cousins would take pictures of me. It's so funny looking back at them now. We would take pictures all over the place. We watched lots of America's Next Top Model. Lots of  "strike a poses". So young & naive back then.

Goodbye..

Today I cut the finally string between us and let go. I miss you. I miss whatever it was we had. I think it meant more to me then it did to you. I really hope you are happy with her. I want nothing but the best for you. Bye.

Once a Day

I'm always saying I grew up fast because of the MS. It's not a lie, I did grow up fast. I just don't think it was all the MS. I was eleven the first time I realized the reason behind my mom suddenly seeming different and out there. I realized after going through the DARE (Drugs Alcohol Resistance Education Program) that my mom drank. Her drinking had escalated by the time I was thirteen. I was left to help out around the house while she was in and out of rehabs. I was in charge of laundry, dinner, helping my brother with his homework, basically everything a thirteen year old shouldn't have to do. That's when I grew up.

The start of MS at sixteen only pushed me to grow up more. With all that going on I never really had the time to be a kid, to act silly.

So I've decided to take at least a few moments from my day to act silly. Because I missed out on it when I was younger but I'm not to old to act silly. Neither are you. So take some moments, act silly or do something for you. Something that will make you happy.

Life is a learning experience. Everyday we learn new things about not just the world but about ourselves as well. Today I realized somethings about myself:

1. I'm deathly afraid of being in the basement late at night.
2. I love blasting country music while I'm cooking.
3. I've always wanted kids but I really think I want to be a foster parent someday, maybe even adopt.

Words on the tip of your tongue. Thoughts flying out of your head. They were right there a second ago but now they are gone. As fast as they were there, they are *POOF*...gone. Like a snap of your fingers. They leave you wondering, what was I thinking? What word was I about to use? It makes life so difficult, you can try to explain to someone what you are thinking or the word you are trying to find but usually it is no help. It just makes you more frustrated, having people throw thoughts and words at you to try and help. You just want to pause time. Freeze things because the thoughts and words seem like they are right in front of you clear as day, you can picture them sometimes. But the words, the thoughts they never come. Just another day living life with MS.

Letting Go...

Today is ONE year since I was diagnosed with MS. I didn't let myself feel anything one year ago today. I acted like I was fine with everything but I wasn't. I pushed everything I was feeling aside, like maybe it would go away or something but I'm pretty sure that was just the denial. I had wanted answers so badly but couldn't handle what those answers really meant.

Well I wanted to make sure that today I could feel whatever I needed to feel. I would let myself laugh and cry. And just be me. I wanted to do something to release the disappointment I had in myself for not being able to "accept" this diagnosis in a years time. So today I did something just for me. I got 4 orange balloons, yeah that's right orange the MS color. I wrote all over the balloons. Positive sayings and just how I was feeling over the last year. I wrote how I'm going to be okay and that MS is not going to break me. I wrote about how I'm strong, crazy and how I haven't given up when there where so many times that I wanted to but I didn't. I kept going. I got back up when I fell. I wrote what I now believe is my motto: I refuse to sink, MS might change the way I do things but I will not let MS define me!

This has been one of the hardest years of my life but I made it through. I didn't do it alone I had lots of help. I was so quick to try planning and putting time limits on being okay and accepting MS. I promised myself that in a year I would be okay with having MS and everything would go back to normal. I was so disappointed in myself for breaking the promise I made to myself. But with the help of an awesome counselor, I know that it's okay that I haven't accepted this diagnosis yet and just moved on with my life like I thought I should. (My last should.) She taught me that everything can't be planned and that's okay. She helped me believe that I am strong and that I will get through this. She believed in me, helped me grow and showed me that it's okay to cry. I'm so grateful for that.

I also had some amazing friends helping me along the way. Some friends near but some very far away. But the distance didn't matter because they were always there for me like I hope to be for them. They listened to me cry and complain. They reassured me that things would be okay. They made me laugh till my face and stomach hurt when they knew I needed to laugh. I'm not sure what I would do without them.

 I officially embarked on this journey one year ago today but I think I've really been on this journey my whole life. It's not a new journey or even a new story just a change or added chapter in my life. A hard chapter. I know things won't be easy, nothing in life ever is but I'm up for the challenge. I'm even up for the change and boy do I hate change. But that's okay because I've grown so much this year and I know I can handle the change. I'm not going to give in to the unknown although at times I know I will want to. I know there are going to be times that I just want to cry because things seem so bad but that's okay. So what. I'll cry and grow from the experience. It can only make me stronger.


 Today I released so many emotions but those emotions have helped open my eyes. I truly believe that things will be okay and that this MonSter will not break me or my spirit.I can honestly say I'm proud of myself and the person I've grown to be today. I'm not so disappointed in myself because even though I broke one promise to myself I kept so many other silent unspoken promises I made to myself. I never gave up and I'm doing all I can to deal with this. I'm not hiding, I'm facing it. I'm not running anymore. I'm facing reality, no more unrealistic goals or promises, no more disappointment. This girl will eventually be okay. I've confronted my feelings not pushed them away. I'm ready to start accepting the diagnosis of MS or at least the process of trying to. Things might not be perfect but that's okay with me now. I'm living my life with imperfections.


Thank you to everyone who has stuck by me this last year and helped me through. It means so much to me.

Below is a video of me "letting go of my disappointments in myself and showing MS it won't bring me down" or "letting go of the balloons". LOL

Disappointment

I felt like I had five years to prepare for the diagnosis of MS. I was 16 when everything started, then went back to see my neurologist at 21. I knew what I was facing the minute I went back to the neurologist after hiding for 2 years thinking things would just go away.

I knew that going back meant the possibility of being diagnosed with MS. A year ago I thought that's what I wanted. Well not necessarily a diagnosis but answers. I wanted answers so bad. Answers that would show I'm not crazy. I made a silly stupid promise to myself. A promise I should have known wasn't realistic.

I promised myself that I would be okay after a year. Before I was even diagnosed, I told myself no matter what happens, even if I receive a diagnosis of MS things will be okay in a year. I was stupid to put a time limit on grieving and acceptance of something that feels so much bigger than me at times. I know it's not but sometimes it feels like that. I've been so disappointed in myself lately. Mostly for breaking my promise to myself. I just wish I could magically make everything okay. It's funny I thought I was so ready I just wanted answers but I wasn't thinking about everything that came along with those answers.

Everything became so real and overwhelming. I used to feel so alone in all of this but I know I'm not I have awesome friends that understand exactly what I'm going through. I'm so grateful for them.

As I write this the year deadline I gave myself is approaching fast. I'm trying to push that under the rug. I'm trying not to be so disappointed in myself because even though I broke this one promise to myself I kept so many other silent unspoken promises I made to myself. I never gave up and I'm doing all I can to deal with this. I'm not hiding, I'm facing it. I'm not running anymore. I'm facing reality, no more unrealistic goals or promises, no more disappointment. This girl will eventually be okay.

This time last year I was packing or unpacking at my aunts house. I was trying hard not to think about the doctor's appointment I had to go to in five days time. I feel like I was so much happier last year but that might of just been the denial. I was so determined that my life wouldn't changed but it already had in ways I didn't realize. Change is inevitable. At least that's what I'm learning, I'm trying hard not to fight it. I'm also trying to make changes myself so it doesn't exactly feel like its being done to me against my will.

So here's to accepting change and going with it. Here's to making my own decisions. Here's to living my life!

A Trip Down Memory Lane....

..back to many moons ago. I found this diary today, an old Winnie the Pooh Diary. There were entries dating back to January of 2002 and the latest entry was from January 2003. If my math is right, this journal was from when I was in 5th or 6th grade. Somewhere around there. The pages filled about me going on and on about the boys I liked and thought were cute. I guess it's kind of good being able to look back at an earlier version of myself so untouched by the world. So clueless and naive. So carefree, like nothing could hurt me. It's nice seeing an old version of myself that didn't feel like the world was out to get her.

Ramblings...

I have so much going through my head right now. Things I want to say and kind of a reflection on my week, here it goes. 

I had my last counseling session this week and I think that's a good thing. I think I'm finally in a good place in my life. I may not have it all figured out and I may get absolutely mad at the way things are at times and ball my eyes out. But that's okay because I'm not hiding from it. I'm facing it and that's a good thing from what I learned. I feel like I have really grown and changed these last few months or so...actually I know I have. I feel good about where I am now even on those days where I think I hate my life. I feel really good about taking control of my life and making my own choices. The choices that were best for me not simply just the people around me. I'm gonna feel bad about it because I already do but I know deep down I had to do whats best for me right now.

In my last session my counselor asked me what some of my fears were that I still had. Dating. That was a big one. But she turned it into a possibility for me. One that I really actually want now. One that doesn't seem so scary or foreign. She was saying that I might not meet the right guy the first time but I won't know if I don't try. Then she said something that's been on my mind all week. She said when I fall in love I'll see the world in a whole other way, it will be like seeing the world through rose colored glasses. That love is an amazing thing to experience even if its unrequited love.  I've been thinking about that all week. And I cant wait for this experience. I want that other view of the world..the one with rose colored glasses. I want the world that looks different because I'm in love. Not the world that looks different and blurry because the MS is messing with my eyes. I can't wait for that experience and I really can't wait to meet the man I will share the experience with. 

I speak so freely on here because I'm not actually speaking words I'm write them. For me words are easier said written then spoken.

Some say change is a good thing, but personally I don't like change. Actually I hate change. And this past year has been nothing but change for me. I'm trying as hard as I can to adapt, my life is changing. I have to live with that. This is one of the changes or additions to my life.

It's called Rebif, it is a DMD or a disease modifying drug. I have to take it three times a week, which means I inject myself three times a week. It's a change that I've definitely had up and downs with. It's been a really hard journey so far but I'm hoping this one change will pay off in the end. I mean some say change is a good thing..right? So this change could be a good thing for me.

Today it hit me how truly unhappy I am with my life right now. I'm trying really hard to be happy but lately it's become so hard. The people around me aren't being a help at all. I'm trying so hard to just survive. I'm not looking for a happy ending anymore, just a couple good days where I can feel good about myself. But every time I think I'm having a good day something else comes and knocks me down. It seems like I'm having more and more bad days, when I could really just use one good one.

I hate this feeling.  I'm not sure I've ever felt this alone and empty before. Like it's me against the world and I'm sure anyone is on my side. I'm so tired of fighting and I'm not even sure what I'm fighting anymore. Am I just fighting against myself? I don't even know. But I do know I don't think I've ever felt this bad about myself. I don't think I've ever felt like I'm disappointing so many people like I feel right now. I can't even find the words to say something to them. Mainly because I feel like over-reacting. But what do you do when the people you were closest to, suddenly turn mean...at least that's the way it feels.

I just really want to be happy again.

I was talking to a friend today, she said she can't wait till I'm all grown up and have graduated. I said I want to go back to when I was 15 and she asked why. I said because that was a time before anything had happened. She said I'd still have the same fate. But would I? I can't help but wonder.

That's one of the things I hate most about MS, no one knows why or how they get it. It's a huge mystery.

It's just how it is

I found this quote/passage the other day and just really connected with it.

When I say I'M NOT OKAY it's not to seek out attention. I'm not doing it to get sympathy or to feel sorry for myself. I'm saying it because I need my illness to be REAL to the outside world, so I don't feel like I'm going CRAZY inside my own body. I need to TALK about it the same way I talk about my day or my plans for the week-end (which usually involve sleeping). Because it IS a part of my day, will be a part of my week-end and will always be a part of my REALITY. Please don't make me feel ashamed when I share my reality with you.

This is so how I feel, I just couldn't get it into words.

June 6th 2012

That's a date, I don't think I will ever forget. I was diagnosed with MS that day. I remember sitting in the exam room staring at the posters of brains on the white walls, just waiting for the doctor to come in. I was ready for the diagnosis of Multiple Sclerosis, but deep down I was hoping and praying that it wasn't but it was.

I remember sitting there as my neurologist told me that one of the levels  that they look at for MS turned up positive on my Spinal Tap...it was higher then it should be which indicated MS. That plus all the other criteria I fit gave me the diagnosis of Multiple Sclerosis. I sat there brave holding back the tears and pushing them out of sight as my doctor went through more information with me, like the memory test I had. He went on to talk about the specialists I would have to see and the medication I would have to pick out.

I felt like I was in that room forever, at least it felt like it was longer than usual. I remember leaving and making an appointment to come back. The car ride with my dad as he drove me to work was so quiet. I told him that he could tell my mom, he tried to tell me everything was going to be okay. I said something along the lines of "I know, I was expecting this. I'm fine dad I knew this was coming." I'm pretty sure that was just the shock talking and that I would wake up tomorrow, leaving this all behind as a bad dream.

I was my brave strong self that day. I think mostly because that's all I knew how to do. I was so used to having to be strong. I guess it just comes naturally. I kinda wished I cried that day or allowed myself to feel something. The months that followed were frustrating and hard but I continued to put on a strong front.

It took somewhere around 3-5 months before it hit me, I finally broke down and cried. I've cried a lot since then most of the time I'm not even sure why. Mostly for the life I thought I was going to have, the life I had dreamed of. But everything feels different now, somehow changed..kind of like a change in the batting line up.

10 months give or take have passed since that day. I kept telling myself you just need to get through the first year and then everything will be okay. In one year you will be okay with all of this and life will go back to normal. Well in 2 months it will be a year since I was diagnosed and I know I will NOT be okay with all of this. I kept thinking somehow it would be easier after a year had passed. But things aren't going to be easier and my life will never go back to the normal I pictured. I will always have this disease and I will always be on medication. I know that's not the end of the world and that someday I will be okay and accepting of this. I just don't see that happening anytime soon.

I'm realizing this isn't something that can be planned out. I always had a plan for my life and now it just seems like I'm winging things.But I've had help and I'm realizing that I'm not so alone and that I don't always have to be strong. That I just need to give myself the time that I really need and throw again the plan I had mapped out. And I really need to let myself feel and not just block everything out.

Oh My Bad...

I forgot, that the world revolves around my brother again. That's right so when I wake up late at 7:00 in the morning, I have to wait to get in the bathroom because 7:00 is his time. But then 7:30 rolls around and he still hasn't used the bathroom, so then I decide to get in there. OF COURSE, that's when he finally gets up and decides it's his time for the bathroom then. So now my parents and brother are yelling at me to get out of the bathroom because my brother needs it. I'm sorry I've been waiting half an hour for the bathroom when he is supposed to be in there at 7:00.

I try to talk but I'm so convinced at this point that they don't hear it because they don't do anything. They don't try to change it. It's three against one. That's definitely a far from fair fight or even a fair discussion. All they keep doing is making up excuses for him. I wonder if they even hear the words that spill from their mouths. Do they hear how ridiculous they sound? They probably do but don't care because they are so set on defending him and taking his side. I'm not even sure if it's worth it to try and keep talking.  They will never hear me, so why should I keep wasting my breath. Maybe it's just time to give up.

One of the Worst Things...

I hate that I'm sick all the time. But what I hate more then being sick is not being able to explain it. I hate the times where I feel so sick and blah that I can't explain it. Half the time I just want to cry because I'm not even sure what to do to feel better. It's so annoying.

Some how people can tell when I don't feel good and they always ask "What's wrong with you?" All I can say is I don't feel well, they ask "Why what's wrong?"....I can't even answer because even though I don't feel good, I can't pin point what's wrong. I'm tired of being sick.

April Fools Gift To My Body...

..I sure hope so. For the last three to four weeks, I've been doing so well with my DMD till tonight that is. I've gone from achy and having chills to being fine the last few weeks with only a headache once in a while to back to full on aches and chills. This is not fun!

I was so excited to finally be feeling good again. Maybe this is just a sick cruel joke from my body being that today, well technically yesterday was April Fools day. A girl can hope right? I really hope this is only a one time thing again. I was so happy to not have to deal with this again.

2 things that irk me

First, I'm sick of hearing, you shouldn't stop living your life just because you have MS. I'm so sick of the assumptions. My life now is exactly how it was before my diagnosis plus or minus some things. I don't go out to bars or go drinking because I don't want to, I've always been like that. I'm not missing out, I just don't feel the need to get drunk or even drink for that matter and make a fool of myself in front of people I don't know. I don't feel like I'm missing out on anything right now.

Yes, I feel like I missed out on things like being a kid and different high school experiences. But then I look back on everything that has happened and it has made me so much stronger.

Second, I'm sick of hearing you had to change your whole life because you have MS. No I didn't. Yes I now have to do injections three times a week but so what. They are slowly down the progression of my MS. People are stupid. I used to get upset now, I just laugh when I hear things like "What are you going to do if you are out on a date excuse yourself from the table and say sorry I need to go take my injection?". Seriously?

People make the stupidest remarks and feeling so unsupported. Instead of the people around me being positive all I hear are negative remarks. As hard as it is to deal with the people around me all the time, I'm so glad that I have found support from people at MS World. I have found a family in them. They understand and get it, they don't pass judgements.

So this lump that my doctor said was an enlarged lymph node...is not an enlarged lymph node. It's a bone! My bones come up higher than normal and stick out more cause I'm so thin my doctor said. I'm so relieved, I really couldn't handle any more bad news.

The big day is here. I'm scared, nervous and my stomach is a huge bundle of nerves. I'm praying for good news, because my dream last night did not contain good news. Time to be somewhat strong. Here goes nothing.

The truth is...

I'm scared. I'm sitting here trying to be as patient as I can be but I hate waiting. I hate not knowing what is going on. I hate knowing the different possibilities but then again I really don't. I like knowing what might happen, I like having the chance to be prepared.

Yesterday was my last day on the antibiotic, there has been no change. I'm no doctor but I'm pretty sure that means that it isn't an infection. I could go crazy thinking what if but...what if.

I was hoping the antibiotic might have started to kick in late but now I'm pretty sure nothing is going to happen from taking it. So then whatever this thing is, it could go one of two ways. It could be benign or it could be malignant. I'm hoping for benign, but I feel as though I need to be prepared for the other. I tear up just thinking about it. I'm too young to have to deal with all this. Haven't I gone through enough?

People say that you are only given what you are strong enough to handle. I'm so tired of being strong. I'm tired of having to hold everything together. I just want to cry. I can't have Cancer. That's all I keep thinking and I feel bad because hundreds of thousands of people have cancer or have been diagnosed with cancer. Even more than that but I don't have an exact number. I know they didn't ask for it, no one does but I think I've been a good sport for the most part about the MS. I just can't deal with something else.

Waiting Games

So I picked up the report and films from the CT Scan I had done on Thursday and I find myself more confused then ever. I guess this is why they tell you to just wait and talk to the doctor. The results revealed no abnormal lymph nodes or masses. I should be relieved..right?

But I'm not because you see I have this lump that is well it's not exactly small and its very hard. My doctor said it was an enlarged hardened lymph node. So now I'm wondering did the scan not pick it up? So now it's back to playing the waiting game till Wednesday when I see my doctor.

Just a part of My Story

So here's the thing. I found this picture, it's a stupid silly picture..I don't even look good in it but whatever.

Its from the day after my 21st birthday..I was on a train headed into the city to celebrate my 21st birthday with people I considered my best friends at the time.  Funny thing is I dont talk to any of them anymore but that's not the point.  Exactly one month before this picture was taken I had surgery to remove my gallbladder. So this was my first big night out after that surgery and I kinda thought this is where my life is really going to start. Here and now. 

Fast forward a couple months and I'm back sitting in a doctors office I never thought I'd have to return to. Boy was I really wrong. Because if you fast forward another 5 months I'm having a spinal tap and a couple weeks after that I'm sitting back in that same doctor's office waiting to be called into another examination room that had become so familiar to me. That day I was diagnosed with Multiple Sclerosis. The months following my diagnosis are a blur.  But they involved more specialists and tests. Even a training nurse because I would have to give myself injections. 

Now here I am wondering what happened and why. I kinda thought my life would go back to normal whatever that is. 

As I sat in the waiting room today waiting to be called in to have a ct scan for a lump I found I realized nothing is ever going to be "normal".  At least not the normal that is floating around in my head. Maybe life isn't supposed to normal or easy, I can't help but to worry. Because this "lump" I found is an enlarged hardened lymph node. It's easy to ignore the small stuff like it's probably just an infection or inflammation. But in the not so far part of my mind, I can't help but over react.

You see I'm the person that plans everything out, I'm the person that has to be prepared for anything. So when my specialist told me I might need to have a needle biopsy and that if it comes out benign then I don't need surgery right away. I can't help but think what happens if it's not an infection or inflammation. Even worse, what happens if it's not benign. It's either one thing or another, it's one of those things that black and white..there are no shades of grey in this case. So if it's not benign that could only mean one thing..that it is malignant. The c word--Cancer. 

I can't help but wonder if it is the big C what happens next. I feel as though my life will be put on hold again but I don't want it to be. Even though I find myself stopping my life currently because of something that may or may not be. I find myself saying don't worry or think about it..everything will be okay. But what if I want to worry, even just a little bit to maybe prepare myself. Is it better to over react and have things be totally fine..or not worry and get a huge surprise?

I would choose the first. Who knows if there is a right answer, I certainly don't. So I think I might just over react just a little bit because I'd rather be prepared and have things be absolutely fine then be stunted and presented with a huge whammy. I guess my point was..that day I saw my life going a completely different way then where I am now. No one really knows whats going to happen.

The other night was a really good night. I skyped with some new friends. It felt so good to just laugh and let loose. I liked not having to worry about my health, it was really nice. I ended the night feeling so good not just about myself but about life. My stomach hurt by the end of the night but not from being sick from laughter. I felt really good at the end of night, better then I've felt in a really long time. I could really use more nights like this.

I love ending my day with something I enjoy doing that relaxes me. So I made stew. It's still cooking so I don't know how it is but it sure looks good. Next time I think I might throw in some peas.

Just something I made on Photoshop today. I wanted to write it on a sidewalk near me but there's no sidewalk by my house and all the patios are covered with snow.

Do I take the step and reclaim my life?

I'm trying so hard to be okay. I'm trying so hard not to worry. Everyone keeps telling me everything will be okay. But something is wrong I can feel it, I'm really hoping that I am wrong though. I'm hoping that everything is fine. But I have this feeling that something isn't right, I've had that same feeling before when I knew that something wasn't right with me. Unfortunately I was right that time, I was diagnosed with Multiple Sclerosis.

I need this feeling to go away because this time I need to be okay. I can't handle having anything else wrong with me, I just can't especially this. I just keep thinking what did I do wrong. Maybe it's because I tried too hard to follow the rules, I tried to hard to be this perfect person. Is it a punishment? Is this god's way of showing me that no one is perfect?

I'm handling the MS, I'm getting through that. But I don't think I could handle if something is wrong with me and I can't have kids because of it. I know I can't handle that. That's something that has the power to destroy me and all the dreams I've had for my life. I know there are other ways to have a child but it's not the same. I'm hoping like hell that it's just my meds messing with my body or something else that is fixable in someway. Because this is not something I'm prepared for or ready to deal with.

I just need some support...

Cause I was bored...so now I have a new background for my desktop. I love photoshop.

I'm trying really hard to start living for myself, having my own expectations and not trying to live up to the unbelievably impossible ones set in place by my parents. I'm trying to make some changes, which is hard for my because I absolutely hate change. So this is a good start right? It's kinda like a new start for me I guess you can say and it has nothing to do with New Year Resolutions. It's time to live for me.

The truth is...I miss you.

I think deep down I knew that adding a guy into the equation wasn't a good idea but I had to give it a shot right? But not that it didn't go well I'm at a loss emotionally. So do I try again, taking another risk? Or do I put it to the back burner once more?

I just really like this.

Sometimes I wonder how I got here to this place I'm at now. I honestly have no idea. I'm so unhappy and no one seems to understand. I hear "Well that's life" more and more from the people around me. "I don't have sympathy for you" is another I hear often. It makes me kind of mad, why ask how I've been feeling if you're just going to respond by saying something mean. Yes, right now I have periods of "hot flashes" followed by bursts of the "chills" and I understand that you have been dealing with hot flashes for a while now but just because I'm experiencing these things now doesn't mean I'm exempt from the real thing.

I'm just sick of everything....seems like a common theme in my life lately.

Basically, in the end, all it comes down to is...I want to be loved. Simple, right? I'm not so sure.

The worst feeling in the world is when you are in the middle of doing something but you are having trouble then you can't remember what you were supposed to be doing. So you just sit there staring at the screen, trying to remember and getting so frustrated but no one understands. They say things to imply that you should just shake it off like everyone forgets stuff or I forget stuff all the time. I want to scream and say there's a difference between you and me, age. I hate when people that are way older than me tell me that its normal to forget stuff..yeah maybe for you but not me. I'm only 22 I don't want that to be my normal.

There are so many thoughts lately that have been running through my head. I try to think them all through but they come and go so fast that I don't have time. One thing I do know is how much of an emotional wreck I've been lately. Even now as I sit heRE and write this tears threaten to pour out of my eyes. They are just sitting there waiting. I feel like my life took a wrong turn somewhere, I'm just not sure where.

I've always wanted a happy ending but it seems like I may not get the one I've always pictured. I think that's what hurts the most. I keep reading book after book and there are these great happy endings. I think to myself I will never have that. At least it doesn't feel like I will ever have that. All I've ever really wanted was a happy ending but the farther I go, the less possible a happy ending seems.

I've always been a book person and i do mean ALWAYS. I would read books non stop when I was in elementary school just for fun and for prizes. When I reached middle school probably about 7th grade I started reading fiction books, you know the romance novel kind. I skipped right over the young adult fiction. I read about all these girls or women that were getting their happily ever after, their own happy endings. It all seemed so perfect and real. It all seemed so possible until lately that is. It doesn't seem so perfect or possible lately.  In fact, it doesn't seem possible at all.