Is it ever going to get better?

The pain has gotten so bad lately. Since being home and having to start over with the doctors, life has become so much more difficult. Most days I can't even do housework, I don't want to go a lot of places, and I dread going to any doctors. I have been to the hospital 5 times since January without much help. My family doctor changed all of my medicines and will not do anything else, after changing and cutting the medicines that were making my life tolerable, other than put in referrals. After being home almost 4 months, I finally get to see the neurologist on Monday. I am hoping she is as good as my neurologist was in Savannah. I hope that she takes me seriously, and realizes that I seriously need help. After waiting and a few left messages, pain management finally called back today. They will not see me until I see Behavioral Health to make sure an opioid or implant treatment will work for me. The problem is, as of now, my appointment to get the evaluation isn't until July. I'm not holding my breath, but I'm hoping that the neurologist can do something to help me or speed the process along. My seizures have become more mild and don't happen very often. For the past 4 or 5 days, I have felt my spine and legs gradually hurt more. This evening, the pain has become so intense that it reminds me so much of how it feels when I start having difficulty moving or walking. I guess the next few days will tell what is going to happen. I refuse to go back to these hospitals or try to call my family doctor about the situation because it won't change anything. I don't understand, when I have more than enough proof and have shown no signs of misuse or addiction to the medicines, why someone can't help me. If it were up to me, I would have already had a second brain surgery, the full one, had the shunt put in, and anything else that could potentially make me feel better. More than anything, I would love to feel that I can work through the pain, and not have to take medicine at all. I just don't understand medical professionals these days. Just because you don't know what any of my many disorders are, or think that I am too young to be in this much pain, doesn't mean that I, and others around me, should have to suffer in silence or do more for me because I am unable to do so.

Sorry it's been so long.

I hadn't realized that it had been so long since I had written a new post. A lot has changed since my last post. I have fought to get to certain doctors, had worsening health issues, my husband had to get out of the Army and help care for me and our son, and we moved back home to West Virginia. I just had my first appointment with my new PCP last Thursday, and she seems pretty decent. I will update with more lately. Also, I've been spending time trying to get walkers and raise donations for the Chiari and Syringomyelia Foundation's Unite @ Nite Walk. If you are interested in joining our team, no matter where you live, and help try to raise donations of your own, you are more than welcome to do so and it would be greatly appreciated. If not, and you are able to make a donation, it would mean the world to me. All money goes directly to the foundation, is tax deductible, and helps raise awareness and fund research in hopes of finding a cure. Below are the links to my personal page and the team's page.

My Page:

http://unitenight.kintera.org/faf/donorReg/donorPledge.asp?ievent=1103902&lis=0&kntae1103902=D0ABD350BD474B4D812F0E0F7F66A26F&supid=402718950

Too Much Brain To Contain's Team Page:

http://unitenight.kintera.org/faf/search/searchTeamPart.asp?ievent=1103902&lis=1&kntae1103902=D6105E4EA8E14A21AFA4F08CFE48D097&supId=0&team=5873155&cj=Y

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.