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.

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

To Mayo We Go...Or Not!

Well, I got a call from the referral management department last night regarding them reapplying for me to go to the Mayo Clinic in Jacksonville. It's not the news that I wanted but leaves me with a sliver of hope that I may still get the chance. Since the Mayo Clinic is out of network, I have to go see a neurologist at a university in Jacksonville, for pretty much a second opinion. They said if he agrees, then he should also recommend that I go to Mayo and Tricare should approve it.

So, here's the problem. They are only sending me to another neurologist. The appointments I already have scheduled, and that my neurologists wants me to see, are also for Pain Medicine Clinic and a Pain Psychologist. When I heard "Pain Psychologist", I was thinking, WTH!?! I asked my neurologist if that was due to depression from everything going on with the pain. He said yes. I was relieved. I was kind of worried that he thought I was crazy for a second just like the others seem to treat me. So, how do I get them to also keep the other two specialties on the referral if the second opinion goes well and he agrees?

My mind has been going a thousand miles an hour and the depression seems to be setting in more. I've been in a funk and dealing with all the emotions on top of the constant, unrelenting pain, is not what I want to deal with. I have always been the person in the past that believed people, was so hopeful when it came to anything, etc. I am just no longer that person. I have changed so much do to the health problems that seem to keep stacking up and other issues in my personal life. I am no longer the "me" that I wish I was. I miss being more independent, I miss having more fun, I miss going out with friends, I miss being able to play more with my son. I am sick of catching glimpses of my walker and wheelchair. I am sick of passing out and having seizures. I am sick of medicine, medicine, medicine. And the thing I am the most sick of...feeling so alone in all of this because no one around me truly knows what is going on.

I just hope that, one day...

Wanting to Give Up but Trying Not To

I am so sick of this life. I long for the day where I may actually be pain free for even one day. I think back to my childhood and everything I used to be able to do. I don't even remember what it feels like anymore to not be in pain. Why is it that I just because I hide my pain as well as I can, I must not be in pain? Why is it just because, "I'm not a textbook case.", I can't get people who want to figure it out? I'm sick of faking this smile but what else is there to do. My hope is about down to nothing. If I can't get a special authorization to go to my ALREADY SCHEDULED appointments at the Mayo Clinic, I won't be able to go. They aren't in network so anything our insurance doesn't pay, we would have to, and we don't have that kind of money. The other option that is relatively close, out of network as well. I was so hopeful about all of this. How long do I have to go through not knowing what is going on, changing meds, getting the dosage raised yet the pain is still barely touched, being told that I need a surgery to then be told, after the test to see if it would help actually gave some improvement, that it wouldn't hurt but it wasn't necessary, etc? It's just so unfair. Why should I not be able to enjoy my family? Why should I not be able to do things with my son and create memories with him? Why should it have to be so hard for me to do the smallest things around the house or even rest and still be in the same amount of pain either way?

Tuesday, I had a electric shock and pain feeling go down my entire spine, just like it a pinched nerve, but it didn't radiate. It shot down and stayed. Then, on Wednesday, all the muscles in my neck were locked and all the muscles near my spine hurt so bad that it felt like someone was twisting them like ringing out a wet rag. Yesterday, it was both. The pain was way beyond tolerable. I never consider the hospital anymore because I either get admitted or pushed aside. I knew that I needed to go. My husband is lucky enough that his work knows how hard everything is right now with my health that if I need him or for him to take me to the hospital, he can.

I put on some clean, comfy clothes, and off we went. My mother-in-law is here so I was able to leave my son at home and not have to leave him and my husband sitting somewhere waiting, and actually be able to have my husband with me to support me. We got to the hospital and were walking to the entrance. I remember getting dizzy and sitting down. Out I went, the seizure decided to hit. Sitting down was the last thing I remember. As I was told, I got back up and walked some more and sat down again, another seizure. Some women were on their way to their car and one went and got a wheelchair for me. As I'm sitting on the sidewalk seizing, EMS came and got me inside. I come to and have heart monitors, IV, oxygen, and who knows what else hooked up to me. Didn't know anything. I was also given a sternum rub during one of the 4 seizures, why, I have no clue. The doctor took my Fentanyl patch off, "so it wouldn't make me drowsy", which it doesn't really do in the first place. There goes another day of not having the meds. The patch I had put on fell off so I had to replace it with that one. Down a patch. Then, that one began to fall off so I had it taped on. They did a CT scan and bloodwork. "Everything was fine post-op and they didn't see anything new. My bloodwork came back good." That's what the doc said as he was talking to us, looking around, yawning, checking his pager. He discharged me with info about seizures, non-epileptic, like I didn't already know that. The whole almost 4 hours I was there, I didn't even get so much as a Tylenol or anything for the nausea. What a crock! I didn't want to be admitted. I didn't want to go in just to be a junkie. I wanted to go in and and try to figure out this new issue and maybe have the pain relieved some what.

I got home and put a new patch on and took some nausea meds, fell asleep while my loving husband handled everything to get ready for bed, and moved from the couch to bed. I don't know what else to do at this point. The only doctor I have that fights for me is running out of options. How am I supposed to keep fighting and staying strong when I have nothing happening in a good way? I just don't know. I know we all have our rough times where it is hard to deal with, but this is beyond that. I really think that it's going to take time to regain hope and strength. I'm losing all faith in feeling better and that a doctor will even care how my life is.

Update and a Very Emotional Day

Well, I suppose I'll start with the update. When the neurologist had spoken to my pain doctor about changing my meds and the pain doctor refused, he had me come over and put me on 50 mcg/h Fentanyl patches. He told me that he wanted me on a "drug vacation" as he called it, so that my body was in minimal to no pain at all for a while. I had a follow-up yesterday to see how the medicine was working. The first day I put it on, I felt a little loopy and then had to nap. After that, there was no change in my pain but every time I changed the patch, I would get sleepy. They went ahead and pushed it up to the 75 mcg/h patches to see if that was enough. It seems that I have a very high tolerance seeing that I have been on pain meds for a while now, plus all the other muscle relaxers and everything that I take 3 times a day. Mind you, I am all of 115 lbs. and most people think that I would be knocked on my you know what, I'm not. It's almost as though I'm not on anything for pain. I changed the patch out as soon as we got them yesterday and got the tired feeling and that was it. This morning, I woke up and my headache isn't as bad as it has been, but so far that is it. Hopefully, after a few days, it will start working better. I have another follow-up again on the 23rd. If I get my referrals straightened out, I will be leaving for Jacksonville, FL on the 25th to finally get to the Mayo Clinic. Otherwise, I am going to have to reschedule until I can get the referrals fixed.

On another note, for some reason, I have been extremely emotionally about all this health stuff lately. Seeing how easily people with the same issues as me can be here one day and gone the next. I tear up hearing about people who have lost the battle that I don't even know, and can't even stand to see the kids that are facing all of this.  I broke down yesterday while we were waiting for the doctor. I was talking to my husband about how I hate that I feel as though the life and all the things I've always wanted to do, seem to have been yanked away from me. I have just been told so much lately that my case isn't text book and they don't know what's going on, that I feel like this will never end. I try my hardest to fake a smile on the outside, but inside, I'm screaming and crying all the time.

So much for hoping.

Well, things didn't go exactly as I had hoped for. I went to the neurologist on Tuesday. I feel so relaxed and calm there since I know that I will be treated right and not like I'm faking anything or have everything downplayed. We got back to the exam room. I was feeling tired, so I rested my head on my hand and closed my eyes. The next thing I remembered was waking up with people in the room and hooked up to an EEG. Not exactly how I expected the day to go.

When I came to completely, he talked to me about what he wanted to happen. He said he wanted me on a "drug vacation" to keep me in as little pain as possible for a little while in hopes that it would reset my body. He believes that all my pain, plus my nervous system being so out of whack from everything, is what is causing me to pass out and have the seizures. He did say that the shunt wouldn't hurt but it wasn't necessary right now. He went out and attempted to call my doctors. The neurosurgeons and my family doctor were on vacation. He managed to get ahold of my pain doctor that I was already scheduled to see the next morning. We could hear him talking to him on the phone, explaining what was going on with me, and what he wanted to do to get my body under control. Everything seemed like it was going to go smoothly.

Wednesday was a busy day for us. I had my pain management appointment. We left early so we could get in early since we had to get back to my husband's work so he could reenlist. We got in really quick and the new PA seemed awesome. She started talking like she was going to follow through with the neurologist's plan. She left the room to go talk to the doctor. The next thing I know, she comes back in saying that the doctor would not follow through with the plan and that they wanted me to get a psychological evaluation. WTH!!! That is the point where I had to hold back as much as I could from flipping out. I kept my cool and talked to the doctor while he proceeded to talk like he was just treating me for headaches. ARE YOU KIDDING ME??? I told him, I don't just have headaches. I am also not here to just get pills because I'm some kind of junkie. I asked him if he thought that was my case. He told me that he didn't think that and started blaming everything on the neurologist. "All he did was talk and wouldn't give me a change to respond. I don't believe what he wants done is the right thing. I wouldn't be able to go home and lay my head down and feel like I did the right thing." He talked to me and talked to me and talked to me. He finally said he could release me and the neurologist could do what he wanted. I finally had to tell him that that is what I wanted to do and we needed to leave so my husband could get back to work.

The whole time this was going on, I was on hold with the neurologist's assistant. They had told me the day before that if I had any problems to call them. Luckily, we had time to spare because they wanted me to come straight over. We left and went straight there. The offices are only a few minutes away from each other. I went and signed in and explained what was going on. The receptionist called back to see where they wanted me to be. I was squeezed in with the assistant. They printed out my current meds like they always due. This time, it listed the new medicine instead of the old one. I felt so much relief after all the stress we had been through. They want to see me back on Wednesday to see how I am doing. So far the meds don't seem to be making much of a difference, not to mention the fact that the patch is irritating the hell out of my skin.

We finally got the appointments out of the way and head back to the base to reenlist. NOPE! The guy that was supposed to do it's wife had their baby that day. He didn't print out the paperwork so the new woman could do it. She told us, "Let me get your number and we will let you know when we can do it." It was just a bad day to say the least. My wonderful hubby then dropped me off at home, and went to get my prescription filled. At first, I could feel a little bit starting to kick in and then it just made me tired. Ever since, not much of a change. I am still in so much pain. I'm still having issues with my hands/legs, my hands are swelling so badly and are more numb than ever, the pressure is killing me, the headaches are getting worse and more frequent, my body is just on a downward spiral. Hopefully the neurologist will get this under control. I don't know how many more days like this I can handle. Wondering if I'm going to be able to move, wondering if I'm going to pass out or have a seizure, wondering if I am going to be able to even do the smallest things for my family. I want to give up on all of it so bad some times, but I know that I have to keep fighting for not only myself, but for my son and husband.

Hoping for a good week

The weekend wasn't the most eventful that I had, but definitely not one of the best. I had to use my walker when we went out, thinking that Lowe's wouldn't have any power carts. It was pouring the rain so I didn't want to take my wheelchair since we have a truck and can't put it inside. Luckily, when we got there, they had some. That saved my legs and hips a ton of pain. Everything seems to be getting back to how it was in December before I was admitted to the hospital. I am having a ton of pain and severe numbness in them. It's not the easiest for me to be on my feet or walk, but I try my hardest to not let anyone know. When we got that done, I rested while my husband did the work that needed to be done on the house.

On Sunday, I had to go pick out my glasses. I don't really like wearing them, but I need them. I found a couple pair that I actually liked and felt looked good. I just hate knowing that I am 29 and am already starting with bifocals. I ordered the no line lenses so no one will be able to tell. After we got done, just walking around the store for less than an hour, my legs were so bad. I didn't anyone though. I did a couple little things with my husband, (watched him put up curtain rods and handed him the screws). After that, I remember baking some brownies and putting some things away in a box. According to what I was told, I did more than that. I lost at least a half hour. I guess after that, I told my mother-in-law that I wasn't feeling well. I laid down on the couch to relax. I then started having slurred, mumbly speech, and kept saying, "Pain, Pain...". After a little while of that, I finally went out and had some twitching. I must have been gagging, because when I came to, I was on my side and had a towel under my mouth. I still couldn't really talk when I woke up. I really saying that I was stuck and couldn't move. My arms and neck felt locked. My amazing husband worked them around and I started getting back to normal. All but the last part, I don't have any clue of it happening. I never remember what happens when I pass out or have a seizure, but I have never had memory loss before.

Today, I woke up in a lot of pain and have a very bad pressure headache in the back of my head. I hear whooshing noise in my ears at all times, just like I did before they drained the fluid. I finally see my neurologist tomorrow. I'm hoping that he will consult with my surgeon and agree with me, after me explaining all that is going on, that the shunt is the best thing for me right now. Who knows how it will turn out, but I usually have a pretty good experience with him. Him and his assistant always take me seriously and listen to what's going on. I also have to make sure to have him submit the referral to the Mayo Clinic so I can get my hotel and everything booked. Between now and my appointment tomorrow, I have decided to also look up conditions that are associated with Chiari to see if any of them can explain some of the things that are going on with me. I will post an update tomorrow and let everyone know how it goes. Fingers crossed and I hope everyone out there, has a good, pain free, day! :)

Some days, I wish I had my old life back.

Today is one of those days, that I am sick of fighting all of these issues. I am strong, and will continue to fight, but some days are harder than others. There is nothing like the days when you are awaken extra early due to one of your problems. Getting up, just knowing how the day is going to be. After waking up, and starting to move around, you realize that it feels like you went back in time a couple months. I haven't used my walker in a while. It's just been sitting there in the corner collecting dust. Once I got moving around, I just thought to myself, "Oh boy, here we go again.".

I got it out, unfolded it, and away I went. I was trying to be as quiet as possible since everyone was still asleep. Of course, they give you the cheapest one possible, that makes the most noise. My hips and legs hurt and I'm feeling just a little off balance today. I hate that walker! I try to avoid it at all costs. All of this just goes along with everything else that seems to be getting worse. I wonder in my mind if there will ever be a day again where I just feel like ME again. I used the walker for a little while, and now I have moved on to just holding things as I walk by. I don't want to become dependent on all this medical equipment. We go to the store and I either have to take my wheelchair, use one of the power carts they have available, or push the buggy. I just get too worn out. When you have "invisible" issues like me, of course you get the stares like, "There is nothing wrong with you.". I hate people that judge. Do you really think that I would be going through all of this if I didn't have to?

My biggest fear is that I will get to the point where I have to use the walker and wheelchair all the time. From the time I wake up, until the time I go to bed. I get tired of telling everyone my speech about how I will do all the things I can until I can't, and that I know what my body can handle. I'm fighting as hard as I can, but I just don't understand why something can't just give. Let me get the surgery. Let me help any of the symptoms that I can. I don't see why this is so hard to get done. I keep being told, "That it is my decision.". I have made my decision. I have made it very clear what I want. Why can't that stupid surgeon just listen???

 I found out yesterday that my neurologist didn't even submit a referral to my insurance for the Mayo Clinic, even though they went through all that they did to get me accepted and pretty much handle getting my appointments scheduled. Luckily, I still have a little over a month until my appointments and I see the neurologist on Tuesday. Tricare told me to make sure he put as much detail into it as he could, including why he wanted me to go to that specific place. Fingers crossed that it gets approved. Right now, I feel that is the only hope I have left to get into doctors that have any clue about what is going on. They deal with Chiari and all of my other conditions every day. Maybe, just maybe, they will pinpoint something, even if it is multiple things, about why all of this is happening. Not only that, I am very interested in seeing the Pain Psychologist. I have had depression and anxiety issues for years, that has just become amplified by all of the past couple years' events. Just get me to the point where I can enjoy life, have fun with my family, and do the things I need to be able to. Other than the pain level being lower, THAT IS ALL I AM ASKING FOR.

Just another day.

If I don't already have enough issues, today I wake up sick. I don't feel like it's the flu. I vomited 16 times. Now I have been having abdominal pain. I don't know if it is the Chiari, the hydrocephalus, or one of the many other things. I truly am just hoping this is some sort of fluke.

I am so sick and tired of being sick and tired. I am so sick of if it's not one thing it's another. When will it all stop? When will life become semi normal again? I am hopeful that seeing my neurologist next week, who is pretty much the only doctor I have that fights for me, will get the shunt situation solved.

If it wasn't for the support I have from my family and few friends, and we can't forget my fellow Chiarians, I don't know where I would be. I'm fighting to the death. I want my life back. I want to have fun and enjoy life instead of hating it most of the time. I want to enjoy my family. One day, if it's the last thing I do, I will be ME again!

What A Ride It Has Been!

On January 31, 2013, the neurologist did a spinal tap and blood work to test for MS. While he was there, he decided to take some extra and test my pressure and everything. After almost 2 weeks, I found out that I didn't have MS, but my spinal fluid pressure was high. The neurologist called my neurosurgeon, and I got an appointment with him quick. After talking, he told me that I had Obstructive Hydrocephalus and that he and the neurologist thought the best route to take would be to do a temporary drain to see if it helped improve my symptoms. If it did, they were going to insert a shunt from the end of my spinal cord around to my abdomen.

On February 21, 2013, I went in for the procedure. It was quick and pretty much pain free. They had me lay flat and did a lumbar puncture and drained a small amount of fluid. Afterwards, I had to lay flat for so long and then they raised my bed, so many degrees, every so often. I was then able to go home with only the restriction of resting and not doing any vigorous activity for two days. The day after the drain, I started feeling relief. It continued to get better with pretty much complete relief of the pressure issues, headache, dizziness, double vision, etc. I was so happy!!! The symptoms remained gone for 9 days. Something had occurred and my body took over. My head and everything was under so much pressure. Almost immediately, all of the symptoms had returned. I was crushed, but at the same time felt hopeful that the shunt would be put in and I would at least be relieved of some of my many issues. I got a call from the surgeon's nurse telling me that I needed a follow-up and to get an eye exam with test to check the pressure in a certain part of my eye. I got the eye exam done and it came back normal.

On February 13, 2013, I had my appointment with the neurosurgeon. Let me tell you, that was waste of time. I went in very hopeful and walked out livid. It started ok. I told him how everything had gotten better until the issue I had and then everything came back worse. He explained to me that when he did the drain, my pressure was within normal range and that he only drained a small amount. I don't care what he said or thought, the test worked! I wasn't faking or imagining that it worked, IT WORKED! He told me that it was ultimately my decision on whether to do the shunt or not. I told him that I wanted it because I wanted to get rid or ease any symptoms I could. I wanted to be able to do more and live, even slightly, in less pain. He explained that I would have to go in every couple years to maintain the shunt and would have scars on my stomach. I explained to him that it didn't matter to me and that I already had scars and stretch marks from pregnancy. That is the least of my worries. He told us, "Let me go call your neurologist.". He wanted to consult with him. That was totally understandable to me. He made it seem like he would be right back. WRONG! Not even 2 minutes later, the receptionist came in and said, "You can go. We will call if we need to see you again." That was the wrong thing to say at that moment. My husband grabbed his stuff and told our son to come on. I walked out of the office saying how horrible the place was and that the surgeon was an ass.

The situation really hit an emotional spot in me. I went back in and told a woman behind the desk what happened. She told me to hold on and came back and said the surgeon would be out in a minute. He didn't come out. The receptionist that told us we could leave came out to talk to me. I told her how I thought that what happened wasn't right. I explained the previous problems I had with the nurse practitioner and how she had called me a junkie, among other things. I told her that I knew it wasn't her fault, but I had been treated badly too many times. Luckily, I have an appointment scheduled with my neurologist in about 10 days. I will be talking to him about all of this. If I don't hear anything before then, I will also be consulting him about a new neurosurgeon. I have been jerked around too long. I have had problems with the neurosurgeon's office since August 27th, 4 days after my decompression surgery and it is still continuing to this day.

Life is getting harder by the day. Doing even the smallest things are getting harder by the day. Functioning, being able to take care of my family, enjoying time with my family other than sitting around, everything is getting worse. The issues keep piling up. I'm having more and more pass outs and seizures. My legs don't want to function most of the time. My arms and especially my hands have become a huge issue since all of the symptoms returned. I am swelling, can't write or even color with my son for more than 5 minutes without being in excruciating pain. I am heading back to the walker and wheelchair, that I have tried so hard to stay away from. My pain management doctor is just as big of a pain as the surgeon is and the pain is out of control. I am up and down every night. The list just goes on and on. I have went from a person in their later 20's to someone who feels like they are at least in their 80's. I have had enough. I will go to however many doctors I have to until I get someone to finally do something. I cannot and will not continue this way.

My busy, hectic life keeping me from posting.

I haven't been able to be on for a long time. Life has been super hectic. Between our move and my health, I haven't had much time. There is a lot going on right now, that when I get some down time, I will fill everyone in. Needless to say, things feel as though they are getting worse. They have found a new issue and I'm sure that there might be more. They changed my pain meds and of course they don't last long, so the pain doctor thought it would be best to just add another dose. UGH!

As soon as things calm down, hopefully soon, I will post about my what all has been going on, as well as the new condition and possible treatment. Thank you to everyone that has read this. When I started it, I never imagined so many people would see it. Like I said before, it was just for me to vent and if I can help just one person, my job is done. I hope that everyone is doing as well as possible and has a great weekend.

So Busy!

I have had so much going on the last few weeks and haven't been able to post. I have been having a lot of issues and don't know what is going on. We bought a new house and just got moved this weekend. I saw my neurologist on Thursday. He did a spinal tap and blood work to check for MS. I don't know if that is what else I have going on but they keep telling me that certain things aren't due to the Chiari or any other issues. I have a gut feeling though that something isn't right. He told me that right now his goal is to improve my quality of life, seeing as I don't have much of one right now.

I finally got my appointments scheduled for the Mayo Clinic. They aren't until April but I can wait. I have to see a pain doctor, a neurologist, and a pain psychologist down there. It's a start. I know that all of the issues I have been facing, I have been experiencing depression again. Other than that, I just go to pain management this week. I hope they understand and listen when I tell them that what they are doing isn't working. I have 75 pages of reports to go over from the 2 hospital visits to see what some things are. Fun Fun! I guess now it's just a waiting game. Luckily, my husband has the next couple weeks off of work. We can try to get this house together and finish cleaning up the rest of our old house. Then, family time and enjoying our first home. :)

Another Hospital Stay

I went to the ER again last Wednesday. My pain was excruciating and definitely uncontrollable. I figured they would run some tests, give me some medicine and send me home. After just being admitted less than 3 weeks earlier for the same thing, I did not expect to be admitted again. They didn't see any surgical need for me to be there the first time and the same thing happened this time. I know it was for the good of me to do some imaging and observe me to see if I was declining. They could've done that with a regularly scheduled doctor's appointment.

I was admitted late on 1/9. I had not received any medicine until I got to a holding unit and didn't have any of mine with me. It was horrible. After a couple hours, I was finally put into a regular room. I stayed there for a day and other than nurses the only person I saw was a neurologist. He told me that there was nothing for him to handle and if anything needed to be done, it would be for the neurosurgeon. I was thinking they might actually do SOMETHING to help but no. They moved me to a different room on the 10th. I spent a whole day waiting for the neurosurgeon to come so I could be discharged. Nothing. Finally on the morning of the 11th, he finally came and saw me. He said that he didn't see anything that needed surgical intervention but that didn't mean it couldn't change a couple weeks or months from now. He said he would take another look at my images next week and give me a call. I was finally free and able to go home.

We had an issue getting the prescriptions filled that is a whole other story, that isn't worth talking about, so we just didn't get them filled since I had my regular meds at home. My pain management doctor said that I could come on Monday morning and they would give me my monthly prescriptions. I will just wait! I am so sore from all the shots and IV's, and stiff from being in the bed for so long. The only different outcome from the first hospital stay is that I will now be having a physical/occupational therapist coming to my house 2-3 times a week. I really don't want to do that so much but if it has the potential to help me and help regain some strength, I will do it. I just want to do whatever I have to to get better for myself and family. I will do whatever I can to avoid having to use a walker and wheelchair for the rest of my life. Just like the doctor said, I AM TOO YOUNG.

The problems just keep mounting. I have Chiari, Syringomyelia, Degenerative Disc Disease, at least 8 bulging or protruding discs, non-epileptic seizures, Migraines, vision problems, weakness, numbness, pressure in my head/ears/spine, Chronic Pain, balance issues, etc. The list just goes on and on. All but 1 has been found in the past year. All I'm looking for is a break already. To all of you who have any medical issues, do not give up until you get answers. Keep pushing and going to whatever doctors you have to until you get what you need.

Oh the pain!

The new problems that I have been having this past month seem to be just getting worse. For the past three days, I feel like I am going down hill at a steady pace. I woke up this morning feeling even worse. Migraine, as soon as I stepped out of bed I encountered the extremely intense spine problems, numbness, increasing weakness, double vision, a grinding feeling every time I move my back, etc. This is getting old. I seems like the last month has been the worse month ever.

Going to the doctor or ER isn't an easy decision. Sure I know that I probably should go but I can't just consider myself. We have no babysitter, I am still unable to drive so my husband, who has so much to do at work and is in charge, would have to leave and take me, they usually don't let children under 12 in the back so I would most definitely be facing it alone, and the fear of being admitted again. If I am, the only person we have to care for my son is my husband. Being in the Army, you can't just call of sick. Explaining the situation, sure they can let him take a couple days off but they could also give him a hard time about it. I am trying so hard to work through it and make it to my pain appointment tomorrow but who knows if that will happen. I hate how MY illness and issues affects every person around me.

I don't understand why I was chosen to have all of these issues. Why wasn't one enough? They seem to just keep piling up on top of me and it weighs me down so much that it feels like I'm being crushed. It's hard to separate whether it's the Chiari, Syringomyelia, Degenerative Disc Disease, my discs problems, or something completely new. I try to be the strong person that hides her pain, puts on a fake smile, and fools everyone into thinking I'm okay. I don't want people to have to worry about me constantly.

All I want is for the worst to be over. For someone to really realize that something is not right. For someone to take me really seriously. I am 28 years old and truly feeling like I'm 82 instead. I hate that my son isn't old enough to really understand what is going on. He knows that mommy is "sick" but doesn't get the extent of it. I hate it affecting him and hearing him tell me that he doesn't want me to go back to the doctor.

Bent in half :(

So, I was experiencing my normal pain yesterday, like always. It was one of those days where I hurt a little more than others but other than being exhausted, nothing out of the ordinary. As we were getting ready to go to bed, all I was doing was walking and a sudden pain, like no other, hit me. I was doubled in half and couldn't stand up straight. My spine had a constant, sharp, stabbing, tingling pain. My hips clear to my toes hurt so bad and were more numb than most days. My head felt like I had a sharp pain that went straight down the center from my chin to the base of my skull. I also had the pain and feeling I get when I have a pinched nerve that affects my left arm.

I managed, hunched over on my walker, to get back to bed. I had to sit there standing with my upper body on the bed for a while before I was even able to consider trying to get into it. I finally got the nerve and doing so made it even worse. Trying to move an inch made it feel worse. I dealt with this all night long. Of course, like any other time I am feeling completely miserable, the cat and my son were not cooperating. The cat was being crazy and waking up my son. I finally just told him that he could come sleep with us so that I wouldn't have to keep getting up. I got all the pillows I could find and got myself propped up into a semi-comfortable position and was able to go to sleep.

When I woke up this morning, I was able to stand more upright being just a little hunched over. The pain isn't quite as intense but still very much there. My arm and legs are still numb but I am used to that. The pain under my shoulder blade is a bit worse but not much I can do about it. So I guess the next couple days will entail not doing much of anything and hoping that pain management will be able to help. I don't know which one of my medical issues is causing this one. I hate facing all of this all the time. I am pretty sure that is has to do with my disc issues but who knows. Considering that I have issues in parts of my entire spine, that's the only thing I can think of. I am just hoping that it doesn't get any worse so another ER trip isn't in my near future, although an ER trip could be a good thing since I got a call from the new neurosurgeon that didn't sound the best. His assistant said that he wanted new MRIs of my cervical and thoracic spine to see if anything has changed to be causing all these new problems. He would look at the ones he has and compare the new ones, when I get them, and "decide whether he even wants to see me". I don't get it. They made it sound so promising in the hospital and now it brings back the feeling that I had before like they don't believe me.

I am in so much pain. Since my Chiari Decompression surgery, I have only gotten worse. Nothing has gotten better. I have new issues all the time. Something is wrong, really wrong I feel. I need someone that is going to take it very seriously. I have insurance, they will get paid, so I don't see what it would hurt to have me come in and talk to me so that I can explain all of my issues, discuss the MRIs and figure out something from there.

My Life Lately

The past week and a half has been a lot of ups and downs. We have a lot going on. I'm hoping that 2013 will be our year. Since I left the hospital, not a whole lot has changed. The pain is at least the same, if not worse. The only difference is, my legs are working better most of the time. Some days are better than others, and it seems like every day brings a new challenge. I am having some new issues, not huge ones, but I have been keeping track of everything for all of the doctors. I am unable to really use the wheelchair in the house we are currently in so I pretty much having to rely on the walker. Although I know I need it and that I am supposed to be using it all the time, I don't always do it. I am stubborn and it is even difficult in some areas of the house. The wheelchair seems to help more and the walker seems to add to the back pain a little. I always take something with me when we go out, it just depends on where we are going and what we will be doing what I will take. I don't know what is going to be in my future with my health but I am willing to do whatever they think is best. The only appointment I have scheduled as of now is just my regular monthly pain management appointment. I have to discuss with them that the steroid shots didn't help and that the medicine I am on is barely touching the pain. I really like the PA that my appointment is with and she said there are a lot of treatments they can try so it makes me hopeful that they will work on my pain.

I have gotten some good news but am still waiting on appointments and news in other areas. The good news is that yesterday morning I got a call from my neurologist's assistant. She told me that they had sent my file down and I would be getting a call from the Mayo Clinic within the next few days about whether they were going to take on my case. It's a start and I will take it. I also got a call yesterday afternoon about scheduling my appointment with the new neurosurgeon but was unable to do so at the time for some reason so they are supposed to figure it out and call me back today. I hope they get it straightened out because I really liked this surgeon. The bad news, which isn't really bad, is that I am still waiting for my PCM to request more authorizations for my specialists.

More has changed as well. Our lease in our current home is up next month and we found a house to buy. It is open enough for me to be able to move around in and doesn't have any stairs to get in or out. Our current home has steps to get in from every entrance. It is one floor and bigger so hopefully I will be able to use my wheelchair and walker the way I am supposed to be. We have already signed a contract on the house itself and last night we took the paperwork to the finance officer that he needed and signed some paperwork with him as well. He said that his underwriter, of course, cannot give him a 100% yes until they get everything done, but she is pretty sure that it is going to work out. I hope it does. My family really needs some good instead of bad all the time. Hopefully by next week we will know if the loan is approved and we can move forward and get closed by our projected 1-31-13 date.

I am just ready for a change. I am so sick of bad constantly popping up every where we look. I need my health to be taken seriously and get it handled before too much permanent damage is done. I do not want the wheelchair and walker to be a permanent thing.