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!