Nothing New on the Home front.

I know it has been a while since I have written. Things have been a little blah around here. I have been in a rut with all these doctors, medicines, insurance, not feeling well, and yet another night in the hospital. The neurosurgeon in Florida was no help at all. I talked to the assistant doctor for a while and then the surgeon came in. Not in a rude way, he flat out asked what I was doing there. According to him my surgery was a success and he didn't understand why I was there. He is supposed to be writing a recommendation for the insurance company in hopes that I will finally get to a specialist. I still don't feel as though my surgery was a success. I still have that awful gut feeling that something needs to be done. I'm just the person going through it all and feeling it all, what would I know?

I went to my regular neurologist last week and he changed my medicine routine and is weaning me off of the Fentanyl patches. I am somewhat anxious that I will be in a lot more pain. We'll give it a try and hope that I'm wrong. I just want to be in as little pain as possible with the least amount of medicine as possible. None of these issues are easy by any means. I am sick of this affecting pretty much every area of my life, as well as those around me. Right now, the only appointments I have to deal with are just my neurologist. I do however need to go to my family doctor for some normal issues.

I was kept over night in the hospital again. I was having excruciating back pain and couldn't really walk again. They tested me for something that luckily it turned out not to be because it would have lead to emergency surgery. I ended up having slipped discs and a B12 deficiency. I was so glad that it was only one night. I hate being in there alone.

Anymore, I just want to stop all of these doctors. I'm sick of hearing that nothing is wrong or just having meds thrown at me when they truly don't know a whole lot about what they are dealing with. I am done going to the hospital in hopes that someone might find a problem and help me. It's time to put on the fake smile, act like nothing is wrong. I haven't even been diagnosed for a year and I am so fed up with it. I have felt so stressed lately and that makes me feel worse. Everything makes it feel worse. I really hope that somehow my insurance decides to let me go to the Mayo Clinic and they can prove everyone wrong.

Hoping, but not holding my breath.

It's been a long road, and it hasn't even been a year of really dealing with all the conditions I have been diagnosed with. I see the new neurosurgeon from the University of Florida on Monday. I am hopeful, but very nervous. I get my hopes up every time that I am supposed to see a new doctor, and they usually get crushed. I'm not really asking for a whole lot. I just want a doctor to listen, believe me, and do whatever tests or procedures, in hopes that I can be somewhat normal again. We've only had to travel once, and here we are, less than a month later, and doing it again. I don't mind if it's what is best for me, but I am sick of going to all these people for pretty much nothing.

I know there are more problems than they know. I know that they need to be doing more for me to either diagnose or "fix" my issues. I don't see why wanting this is too much. Having to think about "being sick" every second of every day, is exhausting. Trying to fight, raise money and awareness, in hopes that one day something good will happen has been my focus. I have tried to use so much to ignore how I feel, but nothing actually works. The "I'm okays" or the fake smiles are getting old. Just because I don't cry all the time doesn't mean that I don't want to. Just because I give everything I can to hold it back and hide my true feelings, doesn't mean that they aren't there. I know that no one ever thinks that it is going to be them who gets sick. I know I didn't, but I did. Why did it take so long to get diagnosed? Why couldn't they have found all this stuff a long time ago? Before I had my son? Before I had to tell him that I was sorry I couldn't do certain things with or for him?

It truly is exhausting to hold it all together, fight, try to keep up with my family, to try to live a normal life, etc. I'm already so sick of dealing with these conditions. All the doctors, the appointments, the medicines, the worrying about me, and like I said, it hasn't even been a year. I'm 29 years old. I should be able to do the things I want. I should be able to do everything I want with my son and family. I should be able to have a life and do the things I love. You get hit with these things that you thought would never happen, and it's like the rug gets yanked out from under you. There is no need to list every single issue or symptom because I would be going on forever. I just want to be as pain free and symptom free as I can be. Yet again, so much to ask for. I want to be taken seriously. I don't want to have to explain everything over and over again. Why should I have to???

One thing and then another.

I have been trying so hard to focus on the good things that I have been trying to do. I have been trying to raise as much money as I can for the CSF walk, work on the page, and find things for my son to do so he can meet some friends. I was pretty much asleep all weekend long. I thought I was just tired. NOPE! My husband helped me change my pain patch yesterday and the medicine was stuck to my back. I was so upset. I was worried that it will happen again. I was worried about what if my son would have touched it. After I kind of got over that, it felt good to be awake and not just being awake and waking up not even knowing I fell asleep.

Today I got the news that I will be seeing the neurosurgeon in Jacksonville. It sounds more promising than what I have dealt with so far. They match the doctor to the case. I actually felt a sense of relief. I don't know that anything will come of it, but I know that every ounce of me hopes so. I know that something is still wrong. I have told every single doctor this. I don't know what else to do. I just don't want medicine pushed at me. I want answers and I really don't think that is too much to ask for. I don't see why more tests can't be run, I don't see why they just won't listen. I really don't understand why someone would become a doctor without truly wanting to help people. For now I am keeping my fingers crossed but am not putting all of my eggs in one basket. I have been let down too many times that way. I guess on Monday, we will see if this was another waste of time.

Facebook page

To all of you out there who are actually reading my posts, I just wanted to share with you that I have started a page on Facebook for Chiari and the related conditions. I want it to be a comfortable place where everyone feels at home and can talk or ask about what they are going through. We as Chiarians only truly know what each other is going through. It is still on the beginning stages, and I plan on putting out more information and make my own covers and pictures. I just wanted to share the page with you all and hope that I can help raise awareness.

The page is www.facebook.com/toomuchbraintocontain.

Why?

Today is one of those days. A day where I wish I didn't know what Chiari Malformation, Syringomyelia, Obstructive Hydrocephalus, Chronic Pain, Degenerative Disc Disease, etc. were. I am getting really close to my breaking point with it all. I am so sick of the run around with all of these doctors and specialists. I don't want to have to travel hours away just to have something done that could've been done where I live. I am pissed that I couldn't go to the doctors, that I truly believe would've been the best for me, that I was supposed to see on Thursday and Friday. I am sick of having to explain what is wrong with me to people, especially medical professionals, because they have no clue what my conditions are. I am sick of looking at all the medicine I take like I'm a pharmacy. I am tired of missing out on doing things with and for my family on my bad days. I am annoyed with all of the limitations that I have to consider. I don't want to hear that another surgeon probably won't do anything for me because I already have one. I am just sick and tired of this life in general.

I feel like I have been stripped of everything. I feel like my life will never be okay again. I know that something is wrong with me, that needs to be fixed, but no one is really listening. Why should my son have to grow up with a mom who can't do some of the things other moms can or that I used to be able to do. I am scared about what it's going to take for them to take me truly seriously. I am sick of being in this amount of pain 24/7.

I do not get why these doctors don't know what to do for me. I don't understand why more people are not aware of these conditions. Why aren't these specialists running more tests? Why aren't they doing procedures that they  are telling me wouldn't hurt? Why does it matter if a doctor is in network or not and you have to jump through hoops, over and over again, just to be able to get to the doctors I feel are what I need? I just long to be the old me, who could go all day and do what I wanted. It's not fair to say the least. I know life isn't fair, but I am really having a tough time right now with it all.

I fight and fight as hard as I can. The problem is, how long do you fight for before you give up and accept that this is it. I am scared to death about what the future holds for me right now. At what point is enough, enough?

Crazy days and finally a little fun.

So, the past week has been a little crazy. Long story short, it started with a medicine change, then a day of the worst pain I have ever felt in my life, an ambulance ride to the emergency room, and a quickly rescheduled appointment with the new neurologist. I had the most severe seizures that I have ever had on Wednesday. My regular neurologist put me on new meds and took me off my old pain medicine. I do believe that was a mistake. I was rushed to the ER after a day that I thought would never end. They did a CT scan and said everything was normal, gave me a couple shots to help the pain and nausea and sent me home.

I was originally scheduled to see the new neurologist on May 13, but after what happened I called and they were able to get me in yesterday. That was a waste of time. The only thing he offered was to admit me and hook me up to an EEG and see if I would have a seizure. I turned that offer down so he is attempting to refer me to a new neurosurgeon and try to see if any further surgery is needed. I wanted him to just agree that the Mayo Clinic would be the best but that didn't happen so it was technically a waste of a trip.

We got a good price on a room for two nights so at least we got a vacation out of it. Today we went to the Jacksonville Zoo. It was nice to get away and have some family time. My head is still in pain from Wednesday but I needed a day away and to have some fun sooo bad. I know I am going to be sore from all of the walking, but time with my boys and trying to keep being sick out of my head was well worth it.

UNITE@NITE!!! Off the subject, but donate if you can. It's a great Cause!!!

Erin Wilson's Personal Page for unite@night - Solo Walk