Quarter of a Century

On Wednesday, I turned 25 the world didn't stop spinning it didn't explode it was just like any other day. I've had this picture or vision of what my life would be like at 25 and honestly my life now is nothing like I imagined it to be. But that's my problem...I'm in visioning what I want for my life without taking into consideration what God already has planned for my life. I really have no say in it I'm just living his will for me.

At this point in time I'm not living the life I had expected to live but I'm living the life god wanted me to live. I'm walking the path he has chosen for me and trying not to question it too much. Here's to trying to live out god's will for me to the best of my ability.

From Relief to Overwhelmed

When I was diagnosed I gave myself a timeline of how long it should take me to be okay with having MS. I would say in a year from now everything will be fine and back to normal. I learned, although not fast enough, that somethings in life just can't be mapped out. I had to give myself all the time I needed and not rush myself through all the things I was feeling.

I realized the other day that I've gone back to setting timelines for certain aspects of my life, one in particular being my health. I have visits with my neurologist and my MS specialist every 4-6 months. When I saw the MS Specialist this past June, he referred me to a neuro-ophthalmologist. I had thought he had said if the neuro-ophthalmologist found anything that we would start looking at treatments. But after my most recent appointment with him last week that doesn't seem to be the case because although things were found he isn't ready to commit to the diagnosis of MS or put me on treatment. He wants to repeat the MRI in 6 months and then go from there. 

I've been using these 6 month periods as timelines thinking okay so after these 6 months we will look at medications. It wasn't until I took a step back and realized what I was doing that I'm able to stop myself. I'm learning to throw these timelines out the window because ultimately I have very little say in what happens 6 months from now as far as starting treatment is concerned. I think throwing away these timelines is going to be the only way to protect myself emotionally and ultimately protect my sanity. I think it might be the only way I'll be able to come out of my next 6 month appointment and be okay with not starting treatment should that be my doctors decision. 

At the end of my appointment last week I was so ready to throw in the towel and give up. I went in the span of a month from feeling an immense sense of relief to a place with an intense overwhelming confusion and fear. Instead of just throwing the towel, I paused. I went back and reread a post I wrote last month. Last month I wrote about the relief I felt and how glad I was that I didn't give up and that I fought for answers. Even though the overwhelming-ness is back, I'm looking forward to feeling that relief I felt last month once again. I'm not setting time limits, I'm hanging on and looking to God.

I'm learning I have no control over this situation it's within my doctor's hands and God's will for me. Here's to trying to give this situation over to God and not trying to take in back into my control. I'm so thankful for the support system that I do have helping me to get through this very tough situation.

Praying for MS

Last week I had the "big three" done, at least that's what the women at my doctors office call them. For those of you who have never heard of the "big three", it's mris of the brain, c spine and t spine.

Yesterday I picked up the reports from my "big three". I read them which is something I do all the time but really shouldn't. The report read "Incidentally noted low-lying cerebellar tonsils 5mm below the foramen magnum equivocal for Chiari I Malformation."

I've been the BIGGEST mess since reading that. Thankfully I met up with a friend last night who got me laughing and distracted me. But last night I went to bed praying that somehow the report is wrong and my brain isn't growing down in a place it shouldn't be. Praying that this illness I have is just MS because I'm not sure how I'm going to handle it being something else. Everyone around me keeps telling me that I'm a fighter. That I'm the strongest person they know that I've been through so much and made it through all of that.

I guess parts of that is true but I don't want to go through this. I don't want to have to be strong. I'm tired of going through all this. I'm tired of fighting for my life. But I also know I have to be positive and there's a reason God chose to give me all this.

I've always felt that he was punishing me and I couldn't understand why. At 24 (almost 25 - next week) I'm still a virgin, I don't drink and I don't do drugs. But maybe this is all apart of God's plan, this is his will for me.

I don't know anything for sure but I have my appointment today with the MS specialist. But if it is Chiari, I'm going to do my best to stay positive, to smile and get through this. I thank God for my friends, the ones I can cry with and the ones who can make me laugh my butt off even when I want to cry my eyes out.

Eyes Wide Open

A couple weeks ago, I saw yet another specialist. That specialist confirmed once and for all that I have MS. Since then I've had this decision looming over my head. Did I want to go on an oral medication that has side effects that could possibly effect my stomach or an inject-able medication that someone told me had left dents in her legs? I've been going back and forth in my mind between the two medications.

I knew I wouldn't be able to handle the stomach issues that I could possibly have from the oral medication because I already have enough stomach problems. Therefore, I had been leaning towards the inject-able medication, the side effects didn't seem awful..they actually seemed manageable. That was until my friend had told and showed me the dents that were left in her legs after the injections.

That little bit of information had me second guessing wanting to go on this medication. I couldn't help but think I don't want dents in my legs, no guy is ever going to want me with those dents, and the various other thoughts that filled my mind. The thoughts were so superficial, I was so worried about my appearance that I had forgotten about all the other parts of myself.

Today, my eyes were opened. I was shopping at Kohl's and there was this little girl sitting in cart, she couldn't of been more than four years old. She seemed like she was having a really good time with her mom. I looked up from the clothes rack and the little girl looked at me and said "You're gorgeous". Those two words coming out of the mouth of this little girl blew me away. A few minutes later, she looked at me again and said "I love your hair".

It might sound silly to you but to me it felt like God was speaking through this little girl. I'd been struggling with the decision to go on a medication that could alter my appearance in some way. But that little girl opened my eyes today, her words brought me to the realization that appearance really doesn't matter. Yes, it felt good to hear her say that "I'm gorgeous" but I feel like she saw more than just my outer ward appearance...I feel like she saw my soul.

I never talk about myself like this because I really don't have a ton of self confidence but she gave me confidence. She made me see myself in another light. It was a truly beautiful and eye opening experience for me. I've always believed that everything happens for a reason. There's a reason that we were both in that store, in the same department at the same time.

I'm seeing myself just a little through her eyes, trying to see what it is that she saw that God so desperately wanted me to see. She may never realize the impact she had on me but she made such a difference in my life today. My wish for that little girl is that she will grow up to see herself through the same set of eyes that she saw me in. I feel truly blessed that God chose that moment to show me not only the way but a little bit of myself through this beautiful, innocent little girl.

Two years ago this month, I walked into what at the time was a new doctors office to me. Little did I know that it wouldn't be the last specialists office that I would walk into. At the time, I thought this is it...this is the last doctor. I'm going to get off this medication and switch to something else.

Two years ago this month, I heard words that I never thought I would ever hear. "I'm almost 99.9% sure that you don't have MS...there's nothing I can do for you." Some may think well that's a good thing right? And I guess it would be if not for the symptoms I experience. Deep down I knew something was wrong and I was pretty sure that something was MS.

Since that day, I've lived in so much fear and anxiety. Fear that I would get worse before they figured things out. Fear that they might not figure out what was wrong with me. Fear that I would end up giving in to the unknown and once again give up my fight for a diagnosis. I struggled a lot with wanting to just pretend that things were okay. Pretend that I hadn't lost my vision for a short period of time. 

Two years ago, I was overwhelmed with the fear, anxiety and the roller-coaster of ups and downs that I had taken a seat on. I could have let that take over me but I didn't. Today I'm grateful that I didn't give up. I'm grateful that I sought out other doctors and that I listened to them. I'm grateful that they saw what that doctor didn't see. I'm grateful that they referred me to other doctors within the neurology specialty when they needed to.

If I had given up that day, I wouldn't have the relief I have today. Today, I'm not overwhelmed with fear or anxiety. Today, I'm full of relief, the relief of having answers. Two days ago, I saw yet another specialist. He confirmed what I think I deep down already knew. I have MS. I'm so grateful that I didn't give up and have answers.

To those of you out there still stuck and being pulled down in what seems like quicksand don't give up. I know things may be really hard right now, trust me I understand. I've been there more times than I would have liked. But I do know things will get better. They may not be better in an hour, a day, a week or even a month. I know we want situations fixed quickly but I've learned that unfortunately that's not always reality. . Yes, it took me two years to get here but if I had given in and given up. I'd still be sinking. Hang in there because some day the sand won't feel so thick and overwhelming-ness of the situation will be gone. Hang in there because trust me if you don't your going to be missing out on so much. Trust me, things will get better. Have faith.

New Normals

I'm so used to dealing with changes in my body. I accepted the fact that I won't know what's going to happen with my body because of the MS. I got used to the fact that I would have new normals like numb body parts and intolerance to heat. The list goes on but I think you get the point.

I've recently reached a new rough patch in the road and I've been really upset about it. I think it's time for me to just throw a smile on my face and pretend like I'm happy. But the truth is that's so much harder than it sounds.

The truth is I miss my best friend like hell. I've been through some pretty rough patches the last few months. From starting al-anon when I had reached my breaking point and several more times since then to losing my vision for length of several hours. Through all that I really just needed my best friend...I really just needed to call her up and talk. But I haven't been able to and that's hard. It's hard not to be able to turn to the one person that's always been there for you no matter what happened.

I feel silly for being upset but the hurt is real. My walls are going up to protect myself, I hate that this is the way it has to be right now.

I'm not sure if it was because I was numb (emotional) before, just not feeling anything, or if it was because I had myself surrounded by a fortress of thick brick walls. Whatever the case may be I want to go back to that, to not feeling or whatever protection I had built up around me.

Growing up in the alcoholic family that I did, I learned quickly to keep my mouth shut and my feelings inside. I learned that sharing those feelings or asking for something I needed emotionally, would only result in getting yelled at. I learned to stuff my feelings inside, hide the hurt and pain and act like everything was okay. Everything wasn't okay but I was dealing. I wasn't feeling but that was okay because I wasn't feeling the hurt.

Maybe it was the counseling and working through my diagnosis that broke down my walls. In order to work through my diagnosis I had to be able to feel my emotions. I had to be able to let myself get upset, cry, be angry, and the thousand other feelings I had as a result of my diagnosis.

Opening myself up to deal with the diagnosis, I think really meant opening up entirely. Not exactly something I realized at the time but I'm realizing that now. The memories, the feelings, and everything I needed that I had stuffed down deep inside was and is now free to come out. And boy did it come out or at least up. Everything I had stuff down, tried to forget and hidden is coming out. I'm feeling it all now. Honestly, it doesn't feel good at all, it feels horrible. I want it all to go away, stuff it back down inside. Maybe I'm not as ready to deal with all of this as I thought I was.

Scattered Pieces

I feel so all over the place, my thoughts are spread out all over the place and can't keep them straight. It's almost as if a tornado has ripped through my life, picking up my thoughts and sprinkling them everywhere leaving a trail of destruction and confusion.

I've tried so hard to be the daughter that you wanted me to be. Long ago I realized I will never be the daughter you have dreamed up in your mind. No matter what I do nothing ever seems to be good enough for you and no matter what I'm always wrong. I filled my life with the choices you wanted me to make, they never quite did feel right. But I made them with the hopes that if I made those choices you'd want me, accept me, or love me. I never felt the love I needed from you.

I never did get what I needed from you and I've spent so much time blaming you for that, at least I think. I'm learning that it wasn't something you could give me but that's still hard to grasp. Mostly because I've watched you give my brother what you couldn't give me. How could you give to him and not to me? And now you are dangling wanting to be there in front of my face only to keep ripping it away. I'm not sure why I keep falling for this.

To make up for not having you, I got attached to other people in my life...trying to fill this void I have. And while yes it has helped a bit, it still hurts like hell that my own mother can't be there for me. Even more so it hurts because I don't want you there anymore. I'm done letting myself be hurt by you. I've been hurt enough, I have a lifetime of hurt and pain. I've been broken and feel broken in so many ways. I have all of these feelings yet I feel so extremely empty. Wishing I could hit the rewind button and step out of the tornado's path.

Truth is...

I struggle with relationships...all relationships. I mean not so much friendships, there's some problems there I guess but mainly romantic relationships. I guess that's what I can call them.

I'm afraid of getting attached, so I pull away. I've been hurt more times than I can count or for that matter even really remember. I've been hurt by guys but also by the people in my life that I thought were never supposed to hurt me. I'm so far from perfect. I don't want to make the same mistakes and hurt someone like I've been hurt. But there's so much in me that is telling me to run the other way. Telling me to get out before you get hurt. Telling me that I'm not ready...I can feel it in every fiber of my being.

It's hard to want something you know you aren't ready for.

Where are you?

It's been a while since I've blogged last and I miss it. The lack of blogging isn't because I have nothing to say, perhaps it's because I have too much to say. I have so many thoughts going around in my mind and I'm finding it hard to set them straight. Everything is mixed and jumbled, I want so bad to blog about a particular issue going on in my life at the current moment. But I just can't seem to get the words to move in the way I need them to, down to my fingers to type words onto the page. I'm hoping that the clear words will come soon and that I'll be able to blog once again.

She didn't have to be

I had a great time this past Sunday, it's been a while since I've been able to say that. I dreaded going to look for a graduation dress. I mean yeah I was looking forward to it...I really couldn't wait to find a dress. What I could wait for was the dreaded feeling of having to go through another important step of my life alone. Okay so maybe you are thinking it's just a graduation dress but it's something that means a lot to me. I felt like I deserved a good experience and I was so sad that I was going to go through this experience alone.

Last Friday night I was at an al-anon meeting and our topic was "self pity". I spoke of how I do self pity really well and how earlier that day I was going through the why me's but that I was just going to keep working the program and let it work me. Well one of the women and I were talking after the meeting and she asked me why I was doing the why me's earlier that day. I told her, I'm graduating from college in May and that this time should be a happy time in my life but I'm going through all of these experiences alone. I explained how I just got my shoes for graduation and now I have to get my dress but I have to go through that all alone. What she said next totally caught me by surprise, she offered to go with me. I surprised myself and took her up on her offer.

On Sunday, I found myself at Kohl's shopping with my new friend. It was an amazing experience, we surprisingly had similar tastes and it was just so much fun. We'd pull a dress off the rack, we wouldn't be too sure about it but we'd pull it anyway for me to try. I did a "fashion show" of dresses as my friend said. I laughed, like really laughed and had fun. There was no stress, just fun, laughter and I just really enjoyed myself. I'm so thankful for the wonderful memory of that day and so grateful to the woman who joined me. She didn't have to go with me, she didn't have to offer but she chose to. That offer meant and means so much to me. I did find my dress and I spent the rest of my day smiling because I truly enjoyed myself. Thank you to the woman who was there when she didn't have to be.

Then I was at a meeting tonight and she was there as well she said something else that surprised me. The day before she asked me about how my doctor's appointment had gone, well let's put it this way it hadn't gone well. In our conversation the day before she asked if someone had gone to my eye doctor appointment with me. I said no, that I normally go to doctor's appointments on my own, that's just how it goes. Anyway, I was talking with her and another woman after the meeting and she turned to me and said "I just wanted to you know you can call me when you have a doctor's appointment. Just let me know the day/time/place and I'll go with you if I can." The other woman jumped in too, "Jess, you can call either of us just let us know when and where, we'll be there if we can." Tears filled my eyes. Neither of them have to be there for me and it means so much to me that they want to be there.

If there's no cure, does it ever end?

A week ago today I attended my first Al-Anon meeting which turned into my second because I stayed for the meeting that followed the one I went to. A couple days later I attended my third. Then again today I attended the beginners meeting that I thought would be a good starting point for me. Again, I attended the meeting that followed. Even though I've only shared once in the five meetings that I've attended now, I'm learning a lot. It's somewhat comforting knowing that I'm not alone in this journey and that others have been there before me. Although I would never wish upon anyone what I've gone through. As I continue to listen, learn, and process what I'm hearing I know that eventually this will get easier and that this will help.

But there's one thing, I've heard and continue to hear, the explanation "It's the disease." I've thought about that.

It was the disease when I was 10 and my mom decided to load me and my friend in a car and drive to the liquor store. I didn't know until she came back to the car with the bottle wrapped in the brown paper and started tossing things into the backseat that she was drunk. This was the first time I remember her being drunk...consequently it was the day after I graduated from the DARE (Drug and Alcohol Resistance Education program) at my elementary school.

It's possible that she had been drinking long before that first time I noticed. I may not have noticed at this point in time at all, if it hadn't been for the DARE program I went through.

I don't remember much from that point on until I was 12, I don't know if the drinking stopped for a couple of years or if I just ignored it. Her drinking got worse and I soon came to realize that the bottle would always be more important than me. It was a year after that when everything seemed to go down hill. I think that year was the year she was constantly in and out of rehabs like they were carnival rides. I remember the summer before I started 8th grade, my brother and I were sent to Maine to live with my dad's sister and her family because my mom was going into yet another rehab. That year when we went back to school my mom was in rehab. She was fine for a bit after she came back that time but then she kept slipping. The slip that hurt the most was the time I came home from school that year on my birthday. My brother and I had been locked out of the house and she was passed out. When we finally got in the house I sent my brother to the basement with the family dog and his homework. I proceeded to try to straighten out the house and get in touch with my dad while my mother threw up all over the place. I tried to ignore that my birthday present was thrown on the floor like she hadn't even thought to wrap it. Happy Birthday to me! That was the disease.

She went into rehab a couple more times after that and finally got sober. She still wasn't a parent. Her actions are still the same as they were when she was drinking.

Was it the disease when she told me to grow up and deal with the MS on my own? A little over a year after my diagnosis, I decided to switch specialists because I wasn't functioning on the medication for the MS and my current doctor wouldn't take me off it. Was it the disease when she told me that there was nothing that the doctor would be able to do for me? There are so many more moments I can recall...were those all the disease?

I guess I'm wondering do her actions every stop coming from the disease? Does she ever start owning up to the actions she makes as her own and not those of the disease?

Moving Forward

Tomorrow will be my last day working as the alumni assistant at my university. I have so many mixed emotions. Right now should be a really happy time, I'm going to be student teaching, finally getting my degree and graduating in May. I feel like I should be jumping up and down and doing cartwheels. Even though I couldn't do a cartwheel if my life depended on it but you get the idea.

I'm sad to be leaving a job that I have truly grown to love and co-workers who I really enjoy working with. I think this sadness is stopping me from being excited about the new journey I'm about to embark on. It is going to be a really exciting journey, it's everything I've ever wanted for a really long time.

But I just have this overwhelming sadness sitting on my chest like a huge elephant or another significantly large animal. It's just hanging out there without an invitation. This position was never supposed to be a long term thing. I knew that going into it..it was always just something temporary but somewhere along the way I fell in love with it and what I was doing. Teaching it's something I've always wanted. It's the career I've always dreamed of. It's everything I've ever dreamed of and what I've worked so hard for. So why is this so hard?

I know eventually the excitement I know I should feel for this new chapter in my life will hit me. I'll be ecstatic and doing the cartwheels that I thought I should be doing. Right now I just need to let go and welcome my new beginning.