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.