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.

The Wheelchair

When I was at my neurologist appointment on 12-21/12, he ordered a wheelchair due to my problems walking. On 12/26/12. I got a phone call from his assistant today saying that I would be getting a call from the medical supply company about when we could pick it up. I was upset about the fact that at 28 years old, I had a walker already and would be getting a wheelchair too. I thought to myself, at least this gives me the time to accept it and maybe it won't be so bad.

A couple hours later, the door bell rang. I thought it was the mail or some other delivery. NOPE! The people didn't call and just delivered the wheelchair. Yes, it saved us a trip, but it surprised me. I managed to hold it together while the man was showing me how to work everything and sign the paperwork. As soon as we closed the door, I lost it. I don't know why it was so horrible but I hated it. My husband grabbed me and held me and all I could do was bawl.

All I want is someone to "fix me". I know that I will never be completely cured but make me the best that they can.

The Weekend Before Christmas

On 12-21-12, I had a scheduled appointment with my neurologist. I had been to the ER 10 days prior for severe spine pain and barely being able to walk. We discussed this at the appointment and he ordered me a wheelchair and submitted a request to have me seen at the Mayo Clinic in Florida. Since the ER trip, things had only gotten worse so I asked if he thought it would be a good idea to go back to the hospital. He didn't think that it was a bad idea. I explained to my neuro that the ER I usually go to seemed to keep just giving me meds and pushing me through. I asked if he thought it would be better to try one of the other local hospitals. He didn't really have an opinion but after discussing it with my husband, we decided to go somewhere new. We found a babysitter so I didn't have to do it alone, dropped our son off, and off we went.

We arrived at the new ER. They have a parking garage and it was far from the entrance. My ability to walk was so bad that my husband had to hold onto me and bear most of my weight to get me to the door. The walk took forever and then a complete stranger came up and offered to help. We got close enough and a nurse saw and asked if I needed a wheelchair. After finally getting one, getting inside and getting signed in, I was almost immediately sent back to triage. Amongst the pain and inability to walk, I had a couple other "issues", that the triage nurse called someone and they took me straight back to a bed. It only took 27 minutes from signing in until a doctor came and talked to me. After explaining my problems, there were a few things he needed to check. After that was done, I was given the option to get an MRI. He told me that if I did, I was definitely being admitted and would be having surgery and in the hospital for the holiday. Not only did that scare me to death, my son instantly popped into my head. I had actually considered not doing anything just to be able to be home with him for the holiday. After a few minutes of trying to figure out what I wanted to do, I was told that I was having the MRI and being admitted. I was crushed. I thought the worst. The MRI results had come back and said that I had bulging discs in my lumbar spine as well as degenerative disc disease. This meant that my entire spine had these issues, not to my Chiari, Syringomyelia, and all the other issues.

I was taken to my room and settled in. It was late so my husband left to go get our son and get him home. They just kept giving me my regular meds and an extra pain med, although it didn't touch the pain, that's all they kept continuing to do. The next morning, my family showed up. The neurosurgeon, not my neurosurgeon but one from his office, came to see me. I remember him talking to me and even considering having my husband go home and get my pre-op and post-op MRIs. I don't know what he was thinking but he changed his mind and just stated that he wanted me to see him in 4-6 weeks and that a neurologist would have to come look at me before I could be discharged. That wasn't until the next day. By the time he got there, checked me out, they ordered a walker for me, and my discharge was processed, it was about 6 pm on 12-23-12. Needless to say, I was in so much pain, exhausted from pretty much no sleep, but I was free. I just had to pick up the walker and home we went. I was so happy to be home in time to get everything ready and be with my son for Christmas. Even though I was still in extreme pain, I did what I had to, with the help from my husband, to make sure "Santa" came and everything was perfect.

The only thing left to do is get the referral I need and get my appointment scheduled with the new neurosurgeon. I am happy to see a new one. He has great references, treated me well, and I truly got the feeling from him that he wants to help me. That is not the case with the surgeon who did my Chiari surgery. I haven't seen him since the day after my surgery. I had only seen his NP, who treated me like dirt and a junkie.

I GIVE UP!!!

I truly thought that I had the strength to face these conditions, but I don't think I do anymore. I am so sick of fighting and fighting for everything and not getting any results. I am sick of going to doctors or emergency rooms and be told to give it time or try this or try that. NOTHING IS WORKING! I have no life anymore. I can't do barely anything without being in pain that most people will never know.

I HATE CHIARI! I HATE SYRINGOMYELIA! I HATE DEGENERATIVE DISC DISEASE! I HATE SEIZURES! I HATE ALL OF IT! Even though I have been seizure free for over a month now, I still can't get in my car and just go somewhere to be alone. I can't drive for a year after the last episode. I am so sick of feeling alone in all of this. While I have people who care and support me, no one that I actually know in real life knows what I am going through. I have a few internet friends that do but that is all. It is so unfair.

I just want to feel better. I want to be able to do things and have fun. I want to be happy and let me tell you that I am far from it. I don't know how much more of it I can take before I snap. I mean how much is one person supposed to go through before they just give up trying to get answers or feel better. I have accepted that I have these conditions. I know there is no cure. I know it could be worse and I could have something that would leave me with little time to live. I just hate that I feel like I am not living because of all that I am going through.

You try to explain the pain, but it is unexplainable. There is no way for me to get those around me to truly understand how I feel and that kills me. I hold a lot inside because of it. If having these conditions were not enough, I constantly have new issues that pop up that scare me, hurt me, and piss me off. I really just want to be me again. I feel as though I will never be me again. When someone gets to the point where they would try any medicine, undergo any procedure, or do absolutely anything to have even just some relief, I think that at their whits end. I am at that place. I guess I just have to accept the fact that this is my life until the end. I will always be in pain, be numb, have so many body issues, and have to face the sadness and depression that goes along with it.

I know that some people out there won't agree with giving up fighting. I can't help that that is the way I feel. No this is not a statement meaning that I give up on my life. I am not giving up on my family. I just give up on my health. Whatever is going to happen is going to happen and from my experience, there is nothing I can do about that.

Just Can't Seem To Get Better

I swear, it seems like nothing I do provides any relief. I was back in the ER on 12/11. I woke up that morning with SEVERE pain all the way down my spine, clear to my tail bone. My legs were killing me, and it was excruciating to walk or even move. I called my neurologist and they said that he was full but if I was in that much pain to go to the ER. My husband came and got me and took me right away.

It was a different pain and in more area of my spine that it has ever been. I got back in with the doctor and since my son was with us, since we have no one to watch him, my husband had to take him out and I had to stay in there alone. The doctor checked me out, ordered no tests, and just ordered pain meds and steroids. About an hour later, the doctor came back and asked if I had any relief yet. I told him that no one had been to see me since he was there, even though I was in a bed, in the hallway, right in front of the nurses station. He said he would take care of it. A couple minutes later, the nurse came, put in the IV, and gave me the medicine. A little while later, the doctor came back to check on me. I told him that I didn't feel a difference. Still no tests or imaging, he just ordered more medicine. The nurse came and gave me more and then was discharged shortly after.

I finally got out of the hospital and looked at the paperwork they gave me. The diagnosis...NECK PAIN. I just don't get it. Yes it started in my neck but this was not neck pain. I know neck pain, I have been dealing with it since 1996. It is now almost a week later and with my regular meds, the steroids, and lots of resting, I still have no relief. I know from my last images that I have 2 posterior fossa fluid collections, a syrinx that looks like it got a little bigger, a protruding disc, and degenerative disc disease. I know that I am not a doctor, but the post-op images still look like there was not enough room created during my decompression surgery.

I received steroid injections on 12/3, in my neck, to see if that was the area that was causing the problems. Well, NO RELIEF so I am assuming that they were unsuccessful. I go back to my neurologist on Friday. It is time for me to really force the issue and take this into my own hands. I cannot and will not sit back and get worse and feel this way every day. I am going to make sure that he either does some new tests, gives me a referral to a new neurosurgeon, or something. I refuse to go back to the one that did my surgery after the way I was treated.

I am to the point where I want to go in and have the complete Chiari surgery done, a shunt put in the syrinx, and have the fluid drained. I would let them do absolutely anything at this point. I would let them fuse my entire spine, replace discs, whatever it takes. This just isn't about me, I have a 4 year old son and a husband that are losing out on having a normal mother and wife because of all of this. I know that I will never be "normal" and I have to deal with this, but I don't have a single day that I feel even remotely good. I have to force myself to do pretty much anything. It isn't fair to me, my son, my husband, or anyone. All I want is some relief. Is that too much to ask for??? I see all of these success stories and it kills me to know that I am not one of them. I don't need to be completely healed, but I do need relief. I am unsure what Pain Management will do when I go back to them in a few weeks but we will see. I would even let them put a neurostimulator in if they thought it would work.

To all of you out there that are facing Chiari, Syringomyelia, or any of the issues related to them, I truly, from the bottom of my heart, hope that you feel better than I do. My goal of this blog is just to vent, help someone, or just let someone out there know that they are not alone in what they are feeling. I am unsure who is reading, I just hope that my goal is being accomplished.

It's been a while.

Well, I know that it's been a while since I have been on here. Of course I have no idea who reads this or if it even makes a difference, but it helps me. I've been pretty much the same since the last post with the same issues. The only thing that has changed is that today is 4 weeks since my last seizure and my legs no longer ache on the inside, like the restless leg feeling.

The doctor has started me on the Butrans 20 mcg/hr patch a few weeks ago and the only change I have noticed from it is the leg thing. I still get the pain, numbness/tingling, etc. The worst part of starting the patch was two days later, I was couch bound for two days. I had a severe migraine to where I almost couldn't move and was vomiting, even with the nausea medicine. I don't know for sure that it was the patch or I got my first extremely severe Chiari headache. I am still going to give it more time to see if I get more relief.

I have been more active with Pain Management. They agreed with the medicines that I am on for now and on Monday, December 3rd, I received my first facet joint injections in my neck. It wasn't anything like I had expected. I expected tons of pain and to be completely out of it from the sedation that I opted for. The worst part of the whole procedure was the numbing shots. They weren't even that bad. The only issues I had with the sedation was for the first few minutes I was a little wobbly. The numbness for a few hours was nice, but once it wore off, I was barely in a little more pain than normal, so I used some ice, took my medicine, and went to bed. I haven't noticed anything yet but just like the pain patch, I am going to wait and give it time. It says that it can take up to two weeks to take full effect. I hope that this is something that works for me. I am so tired of nothing making much of a difference. I don't understand why nothing is bringing me below a 7.  I am still, most days, at a 7 or 8 on the pain scale. I go back in a month, due to the holidays, for a follow-up. I guess they will decide from there, if there isn't a change by then, what to do next. The PA that I see there is awesome and told me not to worry because there are plenty of treatments they can try. I will keep my fingers crossed.

I have probably already said this in the past, but this is all so exhausting. I am tired all the time. The new issue is that I sleep for an hour, maybe two, and then have to get up and move around a little because I hurt and am so uncomfortable. I go back to bed and it happens again a couple hours later. Some days I decide to just stay up. For about the past month, I have only slept one night, all the way though. Then between, trying to keep up with my son, husband, the house, and life, it wears me out even more.

The last month or two has been really difficult for me. I really think that the whole lifelong illness thing has finally hit me. Anymore it's not so much. "Why me?", but more, "How can we get me as comfortable as possible.". I try to wait until my good days to take care of the house but sometimes I can't stand it that I work on my bad days too. Nothing too big but I am so OCD that even though my house is already clean, I feel as if it is a disaster area. My house for me is the only thing I feel I have control over. I can't control my Chiari, Syringomyelia, symptoms of Fibromyalgia, pinched nerves, etc. I have also had a hard time with personal stuff lately and it's not helping one bit. Between the health issues and life in general, it has gotten me to the point, at this time, that I don't even really want to leave the house. It has all left me with some depression issues, which I have had for years but got under control without meds for almost 6 years now. I have few people I can talk to about a lot of it because they either just don't understand or I don't want everyone knowing my personal business. It makes you feel so alone.

Now that I have vented and have been depressing, I will say good bye until next time. I go back to Neuro next week, and we will just have to wait and see what he has to say. I feel like with all these doctors, they just don't have a clue what to do with me anymore. At least to the doctors I am seeing now, I am no longer a junkie. In case I'm not on again for a while, I hope whoever is reading this has a very Merry Christmas and a Happy, pain free, New Year!

Another one of those days

Today has not been such a great day. Heck, since Friday has been tough. I have had migraines and been sick all weekend. I felt fine and it hit out of the blue. I spent Friday and Saturday glued to the couch, feeling terrible. This morning when I woke up, I felt a little better but could still feel it lingering. I knew that I had to go to the store to get food and all that we need for Thanksgiving dinner so I got myself together and managed to get through it. Of course, I then came home and pretty much went straight back to the couch with my husband and son as soon as everything was put away.

I think all of the problems I have been facing the past few days is adjusting to my new medication schedule. It has drained me to the point where I don't want to do anything other than lay on the couch and sleep. It has also gotten me to the point that I hate that I am living all this. I try to be as strong as I can, but you can't be strong all the time. Everyone with an illness is going to face times where they hate having to live life the way they do and can't just be "normal". Most days, I can accept it. Today is just not one of those days. Today is one of the days where I just want to scream, throw things, and wonder if this is ever going to get better or just continue to get worse. I know this sounds weak, but I feel that everyone is entitled to have weak moments.

I know that there are people out there that have it way worse than I do. I truly feel for those people. I know the pain and difficulties that I face and I don't think I could even begin to know what to do if I had something worse. If it weren't for my husband, son, family, friends, and all of those in my support system, I would be having a lot rougher time with all of this. I am truly trying to make my problems eye openers for people who have no clue about my conditions. People need to open their eyes to not only the things I am facing, but all the diseases out there that many people have no clue about.

While I know that I will get past this, just like I always do, I know that I need to work on ways to snap myself out of these moods I get into sometimes faster. I will get there. I will not stop until I am able to turn my conditions into something good. It may take some time, for not only me, but for those around me who mean the most to me, I have to make the best of what I have.