Part of me thinks this is always going to be hard. But it wont always be front row and center.  I tend to think a lot, its what I do. I wonder a lot too. About life, the world, my future. In some ways I've given up a lot but I've also kept so much. Through everything I've been through I've stayed true to myself and my values. Yes, I've questioned things, doubted myself many times but I stayed strong even through my hardest days. Diagnosis or not. Medical or mental. Part of me will always want answers and part of me may always be searching for them. But I think another part of me is slowly letting go again because ultimately its what's best for me.

A diagnosis wont define me, its merely a reassurance of some sort. I know what I'm going through is real but the people around me dont always believe that. But in some ways the diagnosis had made it a smidge bit easier. Although they didnt understand what I was going through at all they believed I was having symptoms and experiencing pain. But when doctors began to doubt my diagnosis so did those around me. They then began to doubt my symptoms and what I was experiencing. It went back to being oh that's really nothing, which isn't the story at all.

Just once I would like to feel the relief of a doctor saying to me you are fine, I don't need to see you again. Only that didn't happen yesterday and this all kind of sucks. I was expecting my exercise stress test to be fine and normal. But now I have an additional test added on the original three, I get to have a nuclear stress test. I wish I had heard you are fine. Instead I heard your heart rate raised too fast, if you were older it would be really bad we think this is because of your age but we can't say for sure. So we want to do a nuclear stress test to check the arteries of your heart to make sure the blood is flowing right. Just once I would like to hear you are done here there's no need to come back. Just once.

I'm overwhelmed, really overwhelmed. I have a doctor's appointment on Tuesday and I'm not even sure I want to go but I feel like I have to. I feel like I owe this to myself. I feel like I owe it to myself not to give up.

But in doing that I think I'm hurting myself. Going through this is killing me. I have so many thoughts running through my head I can't sort them out. I'm upset and making absolutely no sense.

What do you do when what you feel you need to do, is ultimately the thing that has the most power to destroy you? But at the same time how do you not go through with this? How do you stop fighting for answers that will help you health-wise?

It's been a really bad week and there has been lots of cry and I do mean lots. I didn't see any of this coming, I was completely blindsided.

When I switched doctors in October I didn't expect be knocked down a couple of pegs, sort of speak. I expected to get off the medication I was on because I was barely functioning on it, which I was taken off of. However, I didn't expect to hear that I might not have MS. Shocker right? I thought so. I've seen that doctor two more times since then not including my most recent appointment.

Let's fast forward to five months later to this week. I had gotten two follow up MRI's last week. This past Tuesday I had a follow up appointment, I had expected answers I didn't really care what the answers were as long as they were answers. The words that left his mouth were really unexpected along with his horrible attitude. He didn't seem to care that I'm a person and that this is something that is effecting my life. It wasn't hard to hear him say it's possible MS. But when I asked him if he didn't think it was MS what did he think it could be hearing him say didn't know was hard. What was even harder was when I asked well if it's not MS where do I go from here? That response hit me the hardest, well you should go to your primary doctor to see if they can figure it out. (Oh but he still wants to see me in 6 months and another MRI in a year.) None of this makes sense.

In a way it feels like I'm starting over. I think I need someone to look at this situation with a clean perspective. I have an appointment to go see my primary doctor, to I guess get her opinion and see if there is anything she suggests.

I'm just really struggling with this whole situation and the tears have been very present. I'm trying to stay strong it is just really hard right now. I just keep thinking what happens now, what's next?

Truths

I just can't handle this anymore.
I'm not sure I will be okay, physically, maybe; mentally, I think so; but emotionally, no.
I think I'm giving up or I'm really close to it.
I'm beginning to question everything.
I know I'm not crazy but sometimes it feels like that.
This makes no sense anymore.
I've never been so confused.
I want something normal.

Jess, Where are you?

When I was 16 all I had wanted were answers, I mean who wouldn't? But I didn't receive a diagnosis then.

Looking back at that time in my life I'm so happy that I hadn't received my diagnosis at 16. Don't get me wrong I'm strong and was really strong for a 16 year old especially all the stuff that had been thrown at me. I just don't think I would have been able to handle it.

I received my diagnosis at 21 then a month before my 23rd birthday, I received a shocking surprise from a new doctor. He was doubting the diagnosis I had been given, he still is. I haven't been feeling as strong as I once was. It's been the hardest period of time for me. I guess I'm searching for that 16 year old girl, where did all her strength go...could it be all used up?

Advice from Someone Who Knows

A while back, I had the pleasure of catching up with a teacher I had in high school. We spoke about the usual things, how we both were, how school was going, etc. I asked how her children were, she told me that her youngest had been diagnosed with Celiac disease. We talked about that for a while and how hard it has been on her daughter.  

I've been thinking a lot since then and this is my advice to parents of a child with an illness.As a child who dealt with being sick a lot when she was younger, going through tests, doctors and the process of diagnosis, I feel as though I have a lot perspective on this.

First and foremost, listen to your child. Let them talk to you about what is going on, let them tell you their opinion about the situation and how they are feeling before you put in your own opinions, (depending on the age of your child--ultimately you'll know what age is right). It's important to children that they know you are actually listening to them; I think letting them express their opinions and feelings first shows that you are listening. My point is you will never really know how your child feels about a situation and how it bothers them if you push your opinions and feelings on them first before they can express their own.

Next, I would say try to keep their life as "normal" as possible. For one, being a child with an illness they already feel different than everyone else, the normal they always pictured has changed. Which is something that they may or may not be able to handle. Make sure they don't spend all their time between simply school, the doctors, and home; leave time for them to be with friends, after school events and such. Encourage them to participate in activities at school whether it's a sport or a club. Being involved in something they enjoy with their friends can make a world of a difference, they might not realize then but it does. If possible try not to schedule doctor's appointments and tests, the day of or after an big event for them. No one wants to spend the day after a big school event like a school dance, prom or such having tests done.

Make sure to keep them in the loop. They are just as scared and worried with what is going on if not more. You might think it makes it worse but it does help them knowing what is going on and knowing what they may be facing. Especially when it comes to the tests they have to have and such. 

Lastly, make sure you give them lots of hugs and tell them you love them. There is nothing worse than feeling as if you are going through something as scary as a diagnosis alone, which can be extremely hard on a child. Hold their hand and comfort them when they need it but at the same time don't suffocate them.