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.