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.
Sunday, November 18, 2012
Thursday, November 15, 2012
Pain Management...AND IT WENT GREAT!!!
This morning, I finally went to my pain management appointment. I was skeptical going in since I have had completely different reactions from different doctors. Some who believed me and tried to help the best they could, and some who would just blow me off like I was some kind of junkie. We arrived early and were able to get in straight away. As soon as we were taken back by the nurse to get some information, a calm feeling came over me. She was amazing. She believed what I was telling her and even made the comment to me, "How have you even been making it day to day?". I was in awe! I hadn't expected this type of attitude from them. Once she recorded all my information and took all my reports to scan, she put me in the room to wait for the doctor.
We got into the room and I was thinking that we were going to be waiting forever. Yet again, something amazing happened...WE DIDN'T HAVE TO! We waited about 5 minutes and the P.A. knocked on the door. As soon as she walked into the room, the look on her face and the vibe she was putting off, I felt that calm feeling again. She immediately started asking questions and looking at all of my reports. We discussed my medicines and she agreed that she thought it was a good start. She also reassured me that the new medicine I had put on just the night before, was perfectly fine to take with all of the ones I had been on for a while. I felt so much better. Once we got over the question part, I broke down crying. I told her about all the troubles I have had with some doctors and my neurosurgeons office and that it just felt so good to have someone else on my side.
After the small meltdown, she started discussing treatment options. She asked about massage therapy but I explained to her that when I had done them in the past, it felt good while I was getting the massage but within about 30 minutes, all my muscles would completely lock up and migraines would hit. She agreed that we would just stay away from that. Her next option was Facet Joint Injections. I told her that I would try whatever she thought would be my best route. At this point, I have already had brain surgery, what's a few shots in the neck. I still have to wait a few weeks to get them but I am kind of excited but anxious at the same time. They offer sedation to where I won't be completely out but it will at least help my nerves. I don't mind needles, however, there is just something about getting 6 shots in an area of my body that is already in so much pain that makes me a little nervous.
Since we had decided on my first course of treatment, she gave me the refills I needed, scheduled my appointment for the injections, and I was out of there. I was in total shock that two appointments in one week had went so well. After years of bad appointments, I was so happy!
We got into the room and I was thinking that we were going to be waiting forever. Yet again, something amazing happened...WE DIDN'T HAVE TO! We waited about 5 minutes and the P.A. knocked on the door. As soon as she walked into the room, the look on her face and the vibe she was putting off, I felt that calm feeling again. She immediately started asking questions and looking at all of my reports. We discussed my medicines and she agreed that she thought it was a good start. She also reassured me that the new medicine I had put on just the night before, was perfectly fine to take with all of the ones I had been on for a while. I felt so much better. Once we got over the question part, I broke down crying. I told her about all the troubles I have had with some doctors and my neurosurgeons office and that it just felt so good to have someone else on my side.
After the small meltdown, she started discussing treatment options. She asked about massage therapy but I explained to her that when I had done them in the past, it felt good while I was getting the massage but within about 30 minutes, all my muscles would completely lock up and migraines would hit. She agreed that we would just stay away from that. Her next option was Facet Joint Injections. I told her that I would try whatever she thought would be my best route. At this point, I have already had brain surgery, what's a few shots in the neck. I still have to wait a few weeks to get them but I am kind of excited but anxious at the same time. They offer sedation to where I won't be completely out but it will at least help my nerves. I don't mind needles, however, there is just something about getting 6 shots in an area of my body that is already in so much pain that makes me a little nervous.
Since we had decided on my first course of treatment, she gave me the refills I needed, scheduled my appointment for the injections, and I was out of there. I was in total shock that two appointments in one week had went so well. After years of bad appointments, I was so happy!
Wednesday, November 14, 2012
Starting my new medication
Well, this evening, I started the new medicine that the neurologist prescribed me. It is a pain patch, and let me tell you I was freaking out. It took me a while of reading the pamphlets and everything that came with them. I had about a 20 minute meltdown before I was finally able to get up the courage to put it on. The whole time, my husband was there, yet again, to support me. He just kept telling me that it would be okay and to just do it. The time came. We read the instructions thoroughly, and my husband helped me put it on. I had yet another meltdown.
I was so worried that something bad was going to happen that I even had to call my mom and dad. Yes, a 28 year old calling mommy and daddy. LOL! Being an Army wife and being so far away from most of your support system can make even the littlest things so hard. After talking to them, I felt a little better, but I was still worried so I didn't take my normal meds in fears of something bad happening. I don't know why, but it just got stuck in my head that the medicine would kick in really fast and being stronger than anything I had ever taken.
I was so worried that something bad was going to happen that I even had to call my mom and dad. Yes, a 28 year old calling mommy and daddy. LOL! Being an Army wife and being so far away from most of your support system can make even the littlest things so hard. After talking to them, I felt a little better, but I was still worried so I didn't take my normal meds in fears of something bad happening. I don't know why, but it just got stuck in my head that the medicine would kick in really fast and being stronger than anything I had ever taken.
Update with the Neurologist!
So I got some good news. What a change! Normally, every time I see a doctor, it's something new that needs to be dealt with. It was a great feeling walking out of that office with a few answers and new plan to try to get me feeling better.
I went to the neurologist yesterday. The results from my 48 hour EEG came back good. While I am still having seizures, they are NON-EPILEPTIC! Yes I still have to deal with wondering when the next one will hit and not being able to drive, but at least I know there isn't anything going on in my brain. The doctor seems to think that they are due to my pain and central nervous system being messed up plus the fact that I am still recovering from my decompression surgery. He seemed hopeful that once everything starts settling down, they will stop. I hope that he is right. That means that I no longer have to take the epilepsy medicine and got to get rid of two other medicines as well.
The other thing that got dealt with was a new plan for my pain. He said that the most important thing he wants to work on is my "pain and suffering". When that came out of his mouth, I was so thankful. Finally, someone trying to help and not just think I am some junkie. He adjusted the medicines I am already on a little and added a new one as well. I sure hope this works. He called them right in and said he wanted to see me in 4 weeks just to see how things were going. He also sent his notes over to my pain management doctor and asked me to have him do the same thing. Another happy moment. A doctor wanting to work with one of my other doctors to get me back to as close to normal as possible. I will be seeing the pain doctor tomorrow morning but I am not quite sure on how I feel that appointment will go.
When we left my appointment, we went straight to the pharmacy to get the new medicines. They told me that they were still working on the and check back in about 15 minutes. After wandering the store for a while, we went back to be told that the new medicine was declined by my insurance because it needed pre-approval. UGH! When I got home, I called and left a message with the nurse, who got back to me pretty quickly. She called and got Tricare to approve the medicine and called the pharmacy to let them know. My husband went back to the pharmacy on his way home from work. When he got there, they told him that they were out of stock but they would have them this afternoon. Another irritating moment. Now we were just in there a few hours before so why couldn't they tell us that then. I was a little frustrated for a while but once I remembered the fact that the appointment went well and that this was the biggest problem, I got over it.
The new ordeal is going to be adjusting to the new treatment plan and getting used to new medicine. I can deal with that. At least it is something. I just hope that the side effects don't end up being more than the benefits. If I can get to a place where I am not at an 8-10 daily on the pain scale, I will be on happy zipperhead!!!
I went to the neurologist yesterday. The results from my 48 hour EEG came back good. While I am still having seizures, they are NON-EPILEPTIC! Yes I still have to deal with wondering when the next one will hit and not being able to drive, but at least I know there isn't anything going on in my brain. The doctor seems to think that they are due to my pain and central nervous system being messed up plus the fact that I am still recovering from my decompression surgery. He seemed hopeful that once everything starts settling down, they will stop. I hope that he is right. That means that I no longer have to take the epilepsy medicine and got to get rid of two other medicines as well.
The other thing that got dealt with was a new plan for my pain. He said that the most important thing he wants to work on is my "pain and suffering". When that came out of his mouth, I was so thankful. Finally, someone trying to help and not just think I am some junkie. He adjusted the medicines I am already on a little and added a new one as well. I sure hope this works. He called them right in and said he wanted to see me in 4 weeks just to see how things were going. He also sent his notes over to my pain management doctor and asked me to have him do the same thing. Another happy moment. A doctor wanting to work with one of my other doctors to get me back to as close to normal as possible. I will be seeing the pain doctor tomorrow morning but I am not quite sure on how I feel that appointment will go.
When we left my appointment, we went straight to the pharmacy to get the new medicines. They told me that they were still working on the and check back in about 15 minutes. After wandering the store for a while, we went back to be told that the new medicine was declined by my insurance because it needed pre-approval. UGH! When I got home, I called and left a message with the nurse, who got back to me pretty quickly. She called and got Tricare to approve the medicine and called the pharmacy to let them know. My husband went back to the pharmacy on his way home from work. When he got there, they told him that they were out of stock but they would have them this afternoon. Another irritating moment. Now we were just in there a few hours before so why couldn't they tell us that then. I was a little frustrated for a while but once I remembered the fact that the appointment went well and that this was the biggest problem, I got over it.
The new ordeal is going to be adjusting to the new treatment plan and getting used to new medicine. I can deal with that. At least it is something. I just hope that the side effects don't end up being more than the benefits. If I can get to a place where I am not at an 8-10 daily on the pain scale, I will be on happy zipperhead!!!
Wednesday, November 7, 2012
Neurologist or Not?
Yesterday, I was supposed to go to the neurologist. My husband got off work, we got our son ready, and we drove all the way across town just to find out that SOMEHOW my appointment got cancelled and they didn't notify me. Had I not shown up, they would've charged me for taking up their time. Luckily, I kind of like this doctor and this is only strike one. They were able to reschedule me for Tuesday. I sat around all day, excited and anxious, hoping that I would get some answers. Even if there were just about the seizures, any answer would've been nice.
Ever since the diagnoses started rolling in, I feel like it has been a constant battle. A battle to either get people to believe me or to actually be proactive in trying to treat me. It's like they think that just because they did the decompression surgery, I should be fixed. Well in my opinion, maybe the fluid collections are causing some issues, maybe the needed to do the duraplasty, maybe there is scar tissue that is pressing on something, or maybe they should deal with the syrinx. I am getting to the end of my rope. I don't know how many more appointments I can take. I don't know how many more days walking around feeling the way I do I can take. I don't know how I am supposed to live my life like this.
I feel as if the doctor's just want to keep pushing meds on me. I spend hours on the internet in hopes that I can find something on my own that will explain why I feel the way I do. While I know that I am not a medical professional, if the doctors aren't going to take the time to figure it out, then I guess I have to. I find people with the same issues or symptoms and here they are getting treatments, or requiring further surgeries, or whatever. I am on the verge of a major breakdown. I guess it is time to start taking finding new doctors more seriously. The past couple few months have been absolute hell. I am only 28 years old and I just cannot sit back and accept that there is nothing they can do to help or that I have to spend decades more feeling like this. I am sick of feeling like a medical mystery. I am sick of hearing, "Well, let's try this and see if it helps.". Something has got to give.
Ever since the diagnoses started rolling in, I feel like it has been a constant battle. A battle to either get people to believe me or to actually be proactive in trying to treat me. It's like they think that just because they did the decompression surgery, I should be fixed. Well in my opinion, maybe the fluid collections are causing some issues, maybe the needed to do the duraplasty, maybe there is scar tissue that is pressing on something, or maybe they should deal with the syrinx. I am getting to the end of my rope. I don't know how many more appointments I can take. I don't know how many more days walking around feeling the way I do I can take. I don't know how I am supposed to live my life like this.
I feel as if the doctor's just want to keep pushing meds on me. I spend hours on the internet in hopes that I can find something on my own that will explain why I feel the way I do. While I know that I am not a medical professional, if the doctors aren't going to take the time to figure it out, then I guess I have to. I find people with the same issues or symptoms and here they are getting treatments, or requiring further surgeries, or whatever. I am on the verge of a major breakdown. I guess it is time to start taking finding new doctors more seriously. The past couple few months have been absolute hell. I am only 28 years old and I just cannot sit back and accept that there is nothing they can do to help or that I have to spend decades more feeling like this. I am sick of feeling like a medical mystery. I am sick of hearing, "Well, let's try this and see if it helps.". Something has got to give.
Monday, November 5, 2012
Plans for my day have changed
Well, I was supposed to go see my Pain Management doctor today but that isn't going to happen. I am going to have to reschedule and since I am unable to give 24 hour notice, I am going to have to pay $35. I woke up this morning with a terrible headache and feeling really sick. Neither one of my nausea medicines are helping. I really can't wait until I wake up one morning and feel good. Heck, I can't wait to stop having new problems pop up all the time. As soon as I begin to accept one thing, another gets added to my plate. It feels like a never ending ordeal.
I am kinda glad that I won't be able to go. When I saw him the first time, he knew what Chiari Malformation was but I had to explain a lot about it to him. I have just been having that gut feeling that he wouldn't do anything anyways. I just have the feeling that he was going to tell me to either keep taking the medicine I am already on or keep working with my other doctors to see what they want to do. I hate having to see multiple doctors. I just wish that I could only have to see one doctor. When all of this started, I thought that they would all be talking to each other to try to come up with a plan for me but that doesn't seem to be the case.
As far as the Chiari and Syringomyelia is going, there doesn't seem to be any improvement. The only thing that has changed is that my incision no longer hurts but inside near the surgical area is still causing me severe pain. My others symptoms seem to either be staying the same with some getting worse. I knew going into the surgery that there was a big chance that it wouldn't change anything. The bad part is, I had my hopes up that I was going to be one of the lucky ones. I had the idea in my head that either all my symptoms were going to disappear or I was only going to have a few lingering ones,
Tomorrow I have yet another neurologist appointment. I am actually kind of excited about that. I am anxious to see if him and my surgeon have discussed anything and have tried to come up with a plan. The last I head, the surgeon wanted to neurologists notes. For 2 months, the surgeon's office acted like they really didn't want to give me the time of day and now all of a sudden, they want to act like they care. Today has been one week since my last seizure. I am very happy about that. We still don't know why I am having them. No one seems to know if they are regular seizures or a side effect from my brain surgery.
Walking around like this every day is becoming so exhausting and depressing. I don't even want to leave my house anymore and when I do, 90% of the time it is to go to the doctor. The doctors that want to take you seriously can't really do anything since they aren't specialists and the ones who are, a lot of them seem to have the God complex. All I am asking for is to be in less pain, and to get some answers. I just want to be able to live as normal of a life as I possibly can.
I am kinda glad that I won't be able to go. When I saw him the first time, he knew what Chiari Malformation was but I had to explain a lot about it to him. I have just been having that gut feeling that he wouldn't do anything anyways. I just have the feeling that he was going to tell me to either keep taking the medicine I am already on or keep working with my other doctors to see what they want to do. I hate having to see multiple doctors. I just wish that I could only have to see one doctor. When all of this started, I thought that they would all be talking to each other to try to come up with a plan for me but that doesn't seem to be the case.
As far as the Chiari and Syringomyelia is going, there doesn't seem to be any improvement. The only thing that has changed is that my incision no longer hurts but inside near the surgical area is still causing me severe pain. My others symptoms seem to either be staying the same with some getting worse. I knew going into the surgery that there was a big chance that it wouldn't change anything. The bad part is, I had my hopes up that I was going to be one of the lucky ones. I had the idea in my head that either all my symptoms were going to disappear or I was only going to have a few lingering ones,
Tomorrow I have yet another neurologist appointment. I am actually kind of excited about that. I am anxious to see if him and my surgeon have discussed anything and have tried to come up with a plan. The last I head, the surgeon wanted to neurologists notes. For 2 months, the surgeon's office acted like they really didn't want to give me the time of day and now all of a sudden, they want to act like they care. Today has been one week since my last seizure. I am very happy about that. We still don't know why I am having them. No one seems to know if they are regular seizures or a side effect from my brain surgery.
Walking around like this every day is becoming so exhausting and depressing. I don't even want to leave my house anymore and when I do, 90% of the time it is to go to the doctor. The doctors that want to take you seriously can't really do anything since they aren't specialists and the ones who are, a lot of them seem to have the God complex. All I am asking for is to be in less pain, and to get some answers. I just want to be able to live as normal of a life as I possibly can.
Friday, November 2, 2012
Just a little update.
This week has been one of the worst I have had. Some one the symptoms that were calming down a little are now back with a vengeance. My numbness and tingling, throughout my whole body, is back to being extremely difficult to deal with. The arms/hands and legs/feet, seem to be the worse. I also feel like my sciatic nerve is acting up. I am completely numb from the middle of my abdomen to the middle of my thighs. It's getting so bad again that I am also having a lot of facial numbness as well.
Over the past week, my vision seems to be getting worse. My left eye, which is usually the one that gives me the least amount of trouble is getting blurrier. My right eye is getting worse and all feels like it is foggy and doesn't seem like it's going to be going away anytime soon. I have been having to wear my glasses, which I haven't done in years. They don't even seem to be making a huge difference, so I guess a new eye exam is going to be in my future.
Luckily, the seizures haven't been to bad this week. Today is day 4 without any. I have a few on Monday that has caused my legs to still be very sore. The medicine they have me on hasn't completely stopped them yet, but it has calmed them down. I am thankful for that. I usually have somewhat of an indication when they are going to hit but I am terrified that one is going to hit and I won't have any notice. I am worried that I'm going to end up falling and getting hurt. The only person home all day with me is my 4 year old. The only thing he would really be able to do is get my phone so I can call my husband.
My whole body has been feeling a little wobbly. When I stand up, I get a head rush or dizzy feeling every time. Once I get that settled down, I end up walking around like I'm drunk. Stumbling, walking into things, and feeling like I am going to fall over. I have been dropping things a lot again and sometimes having trouble grasping things.I am just hoping that something serious doesn't happen. My whole body feels so weak. I have headaches/migraines every day. I have managed to get the nausea under control except when the headaches are bad. If I am up for too long, my left leg gets to the point where it feels like I can't pick it up off the ground. It more or less just scoots as I am walking.
Sleeping is getting worse again. I was doing okay for a while but now it just doesn't want to happen. I am just so uncomfortable and in so much pain that no matter what I try, I am unable to get even semi comfortable. It is taking me forever to fall asleep. When I wake up in the mornings, it feels as though haven't slept at all. I am just so tired all the time. I feel like I can't do my part around here and it is getting to be very frustrating. I know that I need to take it easy, which I have been, but with my obsessive personality, looking around at things that I could be doing is driving me insane!
To say the least, I am very angry about all of this. I am angry that every day is a new or worsened problem. Sometimes, I feel broken and then sometimes I believe that I can make it though. I know that this makes me sound weak, even though I am actually a very strong woman, but there are times when I feel like I can't handle anymore. I haven't even had the chance to deal with all of my issues because my doctors want to get the bigger things under control first.
Over the past week, my vision seems to be getting worse. My left eye, which is usually the one that gives me the least amount of trouble is getting blurrier. My right eye is getting worse and all feels like it is foggy and doesn't seem like it's going to be going away anytime soon. I have been having to wear my glasses, which I haven't done in years. They don't even seem to be making a huge difference, so I guess a new eye exam is going to be in my future.
Luckily, the seizures haven't been to bad this week. Today is day 4 without any. I have a few on Monday that has caused my legs to still be very sore. The medicine they have me on hasn't completely stopped them yet, but it has calmed them down. I am thankful for that. I usually have somewhat of an indication when they are going to hit but I am terrified that one is going to hit and I won't have any notice. I am worried that I'm going to end up falling and getting hurt. The only person home all day with me is my 4 year old. The only thing he would really be able to do is get my phone so I can call my husband.
My whole body has been feeling a little wobbly. When I stand up, I get a head rush or dizzy feeling every time. Once I get that settled down, I end up walking around like I'm drunk. Stumbling, walking into things, and feeling like I am going to fall over. I have been dropping things a lot again and sometimes having trouble grasping things.I am just hoping that something serious doesn't happen. My whole body feels so weak. I have headaches/migraines every day. I have managed to get the nausea under control except when the headaches are bad. If I am up for too long, my left leg gets to the point where it feels like I can't pick it up off the ground. It more or less just scoots as I am walking.
Sleeping is getting worse again. I was doing okay for a while but now it just doesn't want to happen. I am just so uncomfortable and in so much pain that no matter what I try, I am unable to get even semi comfortable. It is taking me forever to fall asleep. When I wake up in the mornings, it feels as though haven't slept at all. I am just so tired all the time. I feel like I can't do my part around here and it is getting to be very frustrating. I know that I need to take it easy, which I have been, but with my obsessive personality, looking around at things that I could be doing is driving me insane!
To say the least, I am very angry about all of this. I am angry that every day is a new or worsened problem. Sometimes, I feel broken and then sometimes I believe that I can make it though. I know that this makes me sound weak, even though I am actually a very strong woman, but there are times when I feel like I can't handle anymore. I haven't even had the chance to deal with all of my issues because my doctors want to get the bigger things under control first.
What is Chiari Malformation and Syringomyelia?
I don't know who all has been reading this so I thought I would put a little info on here for those who don't know.
There are many symptoms associated with this condition that many are unaware of.
A lot of these symptoms make it hard for people with Chiari to live a normal life. Sometimes, even the simplest tasks are very difficult. Some of us are worse than others. Sometimes, Chiari Malformation is found by accident when looking for another issue. Some people have no symptoms while others have multiple or all of them. We are constantly faced with some issue when it comes to doing things. Chiarians are either unable to do it period or know that if they do, they will be paying for it later. It is potentially a very disabling thing.
There are too many people, especially doctors, out there who know nothing about it or haven't even heard of it. Awareness is so important. If more people were knowledgeable, maybe we would be treated correctly or not be told that there is nothing wrong with us.
Those of us who face Syringomyelia as well, can have even more symptoms to deal with on a daily basis. This condition and Chiari Malformation, a lot of times, go hand in hand.
Neither one of these conditions have cures. All we can do is try to treat the symptoms, which doesn't always work. Sometimes, by the time they are discovered, the damage has already been done. If left untreated, paralysis and rarely, death may occur. Some people end up in wheel chairs while others are able to go about their normal lives. This is why we need to create more awareness so that maybe one day, someone can find a cure. Doctors need to be more aware of these conditions, as well as the many others associated with them, can be treated correctly.
There are many symptoms associated with this condition that many are unaware of.
A lot of these symptoms make it hard for people with Chiari to live a normal life. Sometimes, even the simplest tasks are very difficult. Some of us are worse than others. Sometimes, Chiari Malformation is found by accident when looking for another issue. Some people have no symptoms while others have multiple or all of them. We are constantly faced with some issue when it comes to doing things. Chiarians are either unable to do it period or know that if they do, they will be paying for it later. It is potentially a very disabling thing.
There are too many people, especially doctors, out there who know nothing about it or haven't even heard of it. Awareness is so important. If more people were knowledgeable, maybe we would be treated correctly or not be told that there is nothing wrong with us.
Those of us who face Syringomyelia as well, can have even more symptoms to deal with on a daily basis. This condition and Chiari Malformation, a lot of times, go hand in hand.
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