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.

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.