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.

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?

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?

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.

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.