It's Healing even at 26

The experiences I've never had before that I'm really thankful for because they are healing. These are just a few. The hugs good night before bed and the how did you sleep in the morning when I'm staying with you guys.

Making the drive to comfort me when I'm sick. When I'm upset and or scared about a situation I'm going through. For the big tight hugs that are sometimes for just because. Showing me it's okay not to be perfect; that it's okay not to know everything. That it's okay not to know something, but that sometimes you just need to research a topic a little.

For showing me that being an adult doesn't mean that you have to be a perfect cook, that it's okay to burn and overcook food. That some recipes don't need exact measurements and sometimes you should just let life happen. It's okay not to know what I want, to change my mind, and then change my mind again.

For showing me it's okay to be scared, that we aren't going to be confident in every situation that we are put into. Thank you for not trying to change me and proving to me that I've lovable.

So when you guys make the joke "the kid" is hanging out with us on Friday night. And say we are old and boring, why are you hanging out with us? I usually laugh, you're not old and boring to me. That's why, there's so much you're showing me. I'm not sure you realize it but I'm learning from you. It's changing me and the messed up views I previously had of the world and of myself. 

But it's also the feeling of being safe, secure, and loved. That's how you guys make me feel. You opened up your home and family to me. You made me feel welcome and safe, that's something I truly appreciate.

Even though it's nice to just sit and watch tv. It's not what we are doing that matters, it's more the feeling that comes from it. It feels like home, it's not a feeling I've ever had before.

I know that when I show up at your door that there's going to be no judgement, no matter what I've done. Rather maybe a few weird looks, some hugs, maybe some tears on my part but you always reassure me that it's going to be okay. The things that used to seem like such a big deal before I'm realizing aren't. The world isn't going to end when I make a mistake.

Some may think that these are things you need when you are little and that when you're an adult you've outgrown them. But if you've never had these things, you need them. Heck even if you've had them growing up you could still need them. Some may say those are little silly details that don't mean much, but for me they mean a heck of a whole lot.

I've grown a lot in the last year. Some of it has just been having the freedom to grow as my own person. Some of it has been from the new experiences, they are healing and help to fill in the holes. It's like roots and wings. You are giving me the roots I never had earlier in life, to help me grow my wings.

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.

Accepting a Realization

I had an appointment with another MS specialist and he wasn't quick to say you definitely have MS or you definitely don't have MS. Both of which I thought it would be incredibly hard to hear. What he did say though was that he didn't want to throw out MS because I meet some of the criteria but not all of it. Those criteria including the lesions on my brain, my spinal tap abnormality and my symptom (even as non-specific). He said that MS cannot be ruled out because he can't say for sure that it won't turn into MS and he wants to be cautious with me because of my family history of MS.

I was scared as anything for this appointment. I tried my best to "back out", I even tried bribing my best friend who went with me to the appointment. I'm glad that she didn't cave in and that she was there to help me through it. I was scared to hear what he had to say, scared that he would dismiss me, and just plain scared in general. But leaving that appointment I didn't feel the wave of overwhelming emotion that I thought I would. I won't say I was in complete shock because in a way I kind of went in there expecting the worse but I was calm after my appointment. I didn't feel the need to cry afterwards like I had with my appointments with the other MS specialist. I thought I would breakdown if I had to leave one more doctors office with an unknown diagnosis or unknown cause of my symptoms. Maybe because this doctor is taking things seriously even though he hasn't diagnosed me. Maybe because he has recognized my symptoms and isn't just tossing them completely away. Maybe because he did recognize that something is going on. It could be all those reasons plus others. He did tell me to just go on living on my life.

I'm not going to lie that worried me a bit. I thought so he wants me to just go on living my life without being on a treatment and the only way I'm going to get a diagnosis is if there are more lesions on my next MRI or if I get worse. Then something in my mind changed, I stopped looking at the worst case scenario. I might never have more lesions on my MRI and I might never get worse. Two aspects that I didn't think to look at before because I was always trying to prepared myself for the worst. So while I could get worse which would probably lead me to a diagnosis, I could also stay the same and I've been living with these symptoms for so long what's the difference.

What I wasn't expecting was to feel good leaving his office and in an odd way I did feel good. Maybe I was just ready to accept that I might never have answers after months and months of working on it. I might owe that one to my counselor who helped me through it all. We worked hard on trying to get me back into the good place I was in before I heard the first MS specialist say "I'm not sure you have MS". Maybe it was this appointment along with all the work we did in counseling that helped me get back on track.

In the end I'm just happy that it happened because I do feel so good (even though I'm experiencing symptoms). I'm feeling more positive that I'm where I need to be, I'll move on with my life (keeping track of my symptoms) but I know that if anything does happen I have a great support system of doctors and individuals ready to help me.

“When everything seems like it’s falling apart that’s when God is putting things together just the way he wants it.”