A lot has changed, but stayed the same at the same time.

I know that it's been quite a while since I have posted. A lot has changed but are still the same in some aspects.. I have seen 3 doctors in Jacksonville, but never did make it to the Mayo Clinic. I see my neurologist this afternoon, and have a lot to talk to him about. My seizures and drop spells have come back with a vengeance. They are happening almost daily. I am going to see if he will do another lumbar puncture to check my pressure again. All my symptoms have gotten worse and a few new ones have popped up.

I  had reached my breaking point, and started giving up on doctors. It just seemed as though they didn't care or want to try and take the time to figure anything out. My neurologist did put me back on a seizure medicine and doubled my diazepam daily to try and help settle them them down. I got tired with traveling and wasting the money for no reason. After everything, my insurance still won't approve the Mayo Clinic since they are out of network.

Things are starting and going to be changing drastically for myself and my family. My husband started this week to get out of Army under a Family Care Plan Chapter. I am having more and more trouble taking care of myself and the house. Plus having my 5 year old, he gets scared when things happen to me. He knows how to call my husband, if he is gone, if something happens and I need help. We will be moving back home where we will have much more help and support. I was lucky enough to get the house next door to my parents. This will be a huge stress reliever I think.

There are some good doctors the next town over, including a neurosurgeon who has dealt with Chairi and is one of the neurosurgeons on the East Coast. We should get to keep our medical for a little while after he gets out, which is great.  I am going to talk to my current neurologist about contacting someone up there so I can have continued care and they know the basics of my case already. Hopefully, they will listen to me and do the shunt surgery and/or do the decompression again to see if something went wrong or didn't do enough and will do the full decompression surgery.

I'm looking forward to this process speeding up and finding out soon an estimated time for when we will be able to move. I am looking forward for start doing things to raise awareness at home about Chiari and Syringomyelia. I'm trying not to get my hopes up too high again for it to turn out the same it has down here. I feel that having all of our family and friends so close will be a huge help and major stress reliever. My husband and I believe thismis best for us and will be a huge help to have a bigger support system near by.

Another attempt from the Neurologist

I saw my neurologist again yesterday morning. We discontinued the Fentanyl and he prescribed me some Lidoderm patches. I asked many questions and told him that I was sick of being on these high dose medicines that don't help. My husband asked him about something like Percocet again for break through pain. He put a note in my file and said if the patches didn't work, to call and let them know and they would do a prescription. I came home and put them on immediately and, OF COURSE, no relief. No one ounce of numbness. I have been still trying and not a difference. I called this morning and left a message for the assistant.

Before I left the appointment, he told me that I seem to be doing better. I responded by telling him that I have just given up. Of course he told me that wasn't good. I am just at the point right now where I need a break from fighting tooth and nail, every second of every day with this pain. I just need a break. If I can get to the point where if I can live in a tolerable state and do what I need to, that's where I want to be. This all affects everything in my life and quite frankly, I'm over it. I am constantly thinking about how this is affecting my family and those around me. It breaks my heart that they have to worry. I have been the person that worries about everyone else and how things will affect them for so long that I can't help but still be in that place. I even hate worrying that the Army is going to be affected by me and my health. I know that there are plenty of people who can fill in.

I know I have said this many times, but I am just sick of everything associated with my health. No one asks for these things to happen, they just happen. You hear that everything happens for a reason, but I do not believe people in pain don't deserve it.

How?

I sit and wonder how things can change so much and get so bad in less than a year? How do you go from having so much hope, getting a diagnosis, having a life altering surgery that you pray is going to help, to feeling like you can't even get out of bed? I'm sick of just being my illness. I am sick of these doctors not knowing much about what I have or not wanting to treat anything but that illness. What about all of the other conditions I have that are causing me so much pain? I know this is my life, and I accept that, but at what point do you give up fighting and fighting and fighting to try to get them to understand and actually do something that truly helps or send you to the doctors you really need to see? I have given up having a better life than what I have right now, but how many doctors appointments or hospital stays does it take before you just say this is it and try to ignore it the best you can?

In less than a year, my life has become something I don't even recognize. I don't even remember at this point what it feels like to feel good. It's not fair, and I know that anyone who is fighting any condition feels the same way. I am fed up with going to doctor after doctor. I hate that no one seems to want to really listen to what I feel inside my body. They aren't the ones living it, I AM. I am the only one who knows how I feel. I am the only one who feels that something is not right, but how do you get them to listen. I was so hopeful. In the beginning, I was actually excited to have brain surgery. I truly believed that it was going to be what I needed. Boy was I wrong.

My insurance could care less about what I am facing. You would think that they would just send me where I need to go instead of wasting money on this doctor and that doctor, here try this medicine, no, let's try this one now. Guess what...YOU ARE IDIOTS!!! Why should it be my job to have to explain to medical professionals what I have? Umm, aren't you the ones who spent all that money and time to become a doctor!?! I'm not going to be all poor me. I am just at the fork in the road where I have to chose between if I want to continue spending all my time at the doctors or suck it up and try to not let anyone know that I am hurting. I have at least 4 conditions and mainly 1 is being "treated". They aren't doing a very good job at it either. I know that what I have is not something that these doctors run into every day, but do some homework. Why is it so difficult to try to figure out what you could do to help me and others like me? I just don't get it. I thought you became a doctor and took an oath to help people.

I hate that I am 29 years old and know that I could quite possibly feel like this for the rest of my life. Sure I have my times where I wonder why I couldn't have been one of the lucky ones. I hate that I have a wheel chair and walker just incase I have another episode of not being able to walk. I hate feeling like I am missing out on my son and family. To hear your son tell you regularly, "When you feel better, you can pick me up again. When you feel better, you can do this or that." In my opinion, it's more unfair to them than it is me.

A Little Off Subject.

I have been at the point lately where I am just so stressed and frustrated. I am so sick of all these conditions. Medicine changes all the time, not dealing with my other issues if it isn't the Chiari, doctors not wanting to do anything or test for anything else, etc. I'm so stressed and that keeps my mind going constantly and then it wanders to other issues in my life that I really don't want to deal with. Things that I can't do or have. It seems like I was in a world where I was working towards things that I wanted to being stuck in a life like groundhog day. I get to the point where I feel as though I will never have the good things I want. The things that mean so much to me.

How do I deal with this every single day? How do I face that I may never have any of the things that are so important to me? I am lucky to have my support system and very lucky that I have my husband and son. I feel as though my life is over in a sense. I am fighting the best I can, but when you can't get anywhere with trying to feel better and be "normal", how long before you just throw in the towel and say this is my life? I am trying to focus on helping those like me and raise awareness but some days it's hard.

I just want my old life back. I want to be in less pain and be happy. My body is fighting me so hard on that. The outside stressors affect how I physically feel and I'm sick of it. I know that I need to figure out what to do to not let some things bother me so much, but with all that is going on, even that is hard. I just want to scream. I want to be able to just get rid of the constant mind rushing stress. I've given up on so many doctors, hopes of feeling better soon, hopes of getting the treatment I truly need.

I try my hardest to not let it be seen how much I am bothered, how much I am stressed, or how much I hate that all the things I want for my life are on hold for who knows how long. I am not playing why me, all I want is to figure out how to let all of it go. I accept that I have a lot of health issues but giving up all that I want, I can't figure that out.

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.