Tuesday, August 18, 2009

Stay Tuned... for the Next Episode In This Drama

OK, so the past week I had an MRI, another sleep study, a Spinal tap and tomorrow is another physical evaluation. While I know that I cannot do much of anything, I am very nervous about this. All of the tests always come back normal or something close, but obviously I am not OK and this doctor knows it. This is the only thing really holding me together. I managed to escape the spinal headaches from the Spinal Tap, at least I think I have, which is great, but what I didn't have before (probably because I was paralyzed and couldn't feel it) is a very severe backache. Not just a normal one, one that goes from the top to the bottom of my spine. I guess if I was a spine, I would not like a great big needle jammed into me. I'm sure this is normal, but not comfortable. My hope is that going through all of this will find something and give me some answers. I can't trust that it will though. I have seemed to have lost my ability to not react when I get one of these "everything came back normal" answers. A little worried about myself. Anyway, whatever.
I do know for sure though that the sleep apnea I have is completely neurological. There is nothing obstructing my airways. Getting my tonsils out wasn't a total waste. The scary part is that it's "simply", don't you love that word "simply" , that my brain tells my body to stop breathing. No real way to treat this except with a breathing machine at night. This doctors office has been wonderful to help me find a way to make this work. The last one pretty much said, "Here is your machine, Good Luck". I had problems consistently and they would never help me. Anyway, maybe this will help me a little. After the last test, the guy doing said he thinks I got some much needed deep restful sleep I probably hadn't had in years. He was right. I felt pretty good the next day until I had to walk too much and felt like crap when I went to bed. Oh well, such is my life.
Well, I'll try and update some more after I get some answers from all of this. Asking that all of you cross your fingers, and toes and pray and whatever else you can think of that this might all go through for us. We really need things to go better for us/me. Thanks

Monday, August 10, 2009

Breathing In and Out

So, in the last week or so since my last post, we were able to get both of the boys into football, take care of the school fees, and get some groceries. Things at least give off the appearance of coming together. But as there is always an opposite and equal reaction to everything, so it is this time.
Kyler is down to the wire with getting ready for football season to start. They are doing 2 a days this week. While this may be great for Kyler as far as conditioning, this means that we have to make at least 4 trips to Mountain View every day. Now Dan is doing his best to take some of the pressure off of me, this is soooo tiring, especially when there is anything else, like a doctors appointment during the day. Kyler had to have a physical today in order to play. While this is also a good thing to do anyway, my word. There are so many questions and so many papers to fill out, that it was something like closing on our mortgage. Once all of that appointment was wrapped up, there came that lovely announcement, "You need some shots". To Kyler, you may as well say I'm pointing a gun at you head as tell him he's getting a shot. He is very phobic of needles. Not fun, but he's ok. He did fine. I also took Aubree with me, because she needed a shot, and when she got there, she needed 3 others as well. UGH, I don't think I could have had a worse pair for whining than the 2 of them together. Oh well, I won out and they are both just suffering now. Whatever!!
We got Jake registered for football on Saturday. He has been somewhat patiently waiting for this time to come when he could play tackle football. He played flag for two years and so this is the year. Now, not only will I have Kyler needing to be everywhere, so will Jake. (Breath Christy, breath!!) We did all the volleyball for the girls in the spring, so maybe I'll live.
So in the midst of registration for school, football all around, haircuts, shoes, new clothes, etc, my leg has started to revolt and pretty much stop working today. Now everyone wants to say that it is my stress level, I am more inclined to say that I have been doing WAY too much lately and simply can't keep going at that level anymore. I was discussing with Dan earlier that the stress comes after and because of the problem. It doesn't cause the problem, the problem causes it. On top of all of this, I have this hearing hanging over my head. I really am scared to death of this judge. I don't think I can take being told I'm faking it anymore. Obviously I'm not faking it. Too much is hinging on this. I have worked for years and paid my dues, I deserve this. I am tired of being denied what I've earned and honestly need, because of those who have scammed the system. It seems to effect all sides of my life.
Anyway, sorry for the whiner post. I am just trying to remind myself to breath in and out.

Tuesday, August 4, 2009

The Power of Prayer

Well, the past few days have been very interesting for me. My emotions have been very heightened , even more than usual, not sure why but the roller coaster has been huge. I have heard so many times that things are at the worst just before something good happens. I am holding on to this theory with everything I have in me. Things have been exceptionally hard for us the last week or so. It seems that this happens every year just before the beginning of school. Things start to fall apart. This year though, seems to have a little more kick. There are things that I can't go into.
It has been nearly 3 years since I got sick. We are still fighting the same battle now, as we started fighting then.
We got Kyler and Megan's fee schedules for school last week. I think a heart attack could have easily ensued after opening Kyler's. Between the 2 of them, if we add up all of the yearbooks and pta memberships, it's close to $500. Plus all of the extra things Kyler has had to have for Football, etc. He is playing Defensive Guard. In his defense, he paid for his really expensive cleats, and has tried quite hard to sell banners to get his fees waived. Thanks to some that generously donated, he has had a little success with this. Not enough to get the waiver though. There is a Luau on the 15th of this month that he is selling tickets for in case anyone wants to come. We always find a way to do it, but are really having a hard time this year. I guess maybe I say this every year. It just seem that no matter how hard we prepare, we still end up shorthand when the time comes. Anyway, I am trying to find a silver lining.
So, we have had a few interesting experiences this past week or so as well. There have been some interesting lessons that I have been able to hear during the last few weeks of church. I guess I should say some of the lessons weren't necessarily taught as much as experienced. It amazes me that some how there is a lesson given when I am going through just that thing. I have really struggled for a while now with feeling like I was being ignored by God. I do know better, I do have faith, but this sickness has gone on way too long for me to handle happily. I do try, although probably no one knows I do. Anyway, over the past couple of weeks I have gotten to know a few people better than I had before and at least in small part, appreciate my trial. I have a neighbor I mentioned before that is facing the reality that her 8 year old daughter is going to die. I have watched her very closely lately and am in awe as to how she is dealing with it. I have come to learn that we are given the trials we are because that's what WE can handle. I hope to never have to know what she feels. To my surprise, she has said to me that she wouldn't know how to deal with what I'm going through. To me, there is no comparison, but I guess we all see things differently. I won't go as far as to say that I am happy and grateful for my trials. I haven't hit that point yet, but I really am trying to see something good.
As I mentioned before, we are really struggling in the financial area....AGAIN. So we were trying the other day to figure out where we were going to get bills and grocery money, etc. Well, we participate in a program called freecycle. This is where you post on email when you have things to get rid of and then people who may want what you're giving away express interest and so it's something like one persons junk is an others treasure, only it's free. Well, after this conversation with Dan, I replied to a post and went to pick it up and there were 5 boxes and 3 bags of food. A true answer to a prayer. Well, then we realized that we had run out of all kinds of dishwashing soap and were looking for ways to get that when again it appeared on the email and I picked up 2 Costco sized boxes of it. I know it sounds a little corny, but I see these things as real answers to prayers. We are tired of having to count on others when we should be able to make ends meet, so these are things that feel like are a way to keep a little bit of dignity in yet another of our crisis' .
Dan and I and our kids had not attended a ward activity for quite some time until last Friday. We had really felt out of place for a long time, but we decided to go to this activity and have fun. It was yet another prayer that was answered. We had a lot of fun and felt acceptance like we had felt before. Also, after several months of nothing, Dan was extended a calling and he accepted. It is a calling that neither one of us or anyone else had ever heard of, but it was perfect for Dan at this time in his life. He is very busy and couldn't accept anything that he had to do more than on Sunday, at least for the most part. He is now an Assistant Ward Clerk - Historical Clerk. He gets to attend all of the ward activities and take pictures and notes and basically compile a history for the ward. Also he is the back up if the Ward Clerk is gone. This is good, because he has been that before and knows his stuff in this area. He makes jokes about it, but this puts him back in the Bishopric, sort of, and I am happy that he is finally back in the middle of things. I have prayed for months for something to come up like this. Bishop gave Dan a beautiful blessing when he was set apart and it was really what we needed to hear.
I have another hearing scheduled with the Social Security office. I don't know how many of you remember or heard about the horrible judge from before, but I get to see her again. I am so scared I can't even explain. My representative has assured me that my case is stronger than before and that I am a very credible person. This is nice to hear as the judge and many others have let me know just how non-credible they believed me to be. This time I have a written diagnosis made by a doctor, (who wrote SSDI code in there so the judge couldn't deny it), even though none of us agree on it, and the evaluation that I flunked severely in my corner. I am still scared to death. I don't know what we are going to do if this doesn't get approved. Not only would the income help us and put my guilt for causing all of this to bed, the insurance is the biggest help. I have to keep getting medical help, but the expense is making it so I can't sometimes.
So yesterday I went to a doctors appointment that apparently I had cancelled. I had no recollection of cancelling it, but it worked out for the best. While I was there, they scheduled another sleep study for me to see if there was any improvement after having my tonsils out. I did this study last night and without the doctor saying it, things are sooooo much better. I knew it, but now I am pretty sure I have the information to prove it. This really hasn't changed much in regards to my other issues, but at least I get some good sleep when I finally get there. I am fairly certain, and the docs have said, that if my tonsils hadn't come out, I would have died in my sleep.
I know the last post was pretty bad as far as attitude goes. I really am trying to stay positive, it's just really hard some times. My kids have really been out of control lately and I am not able to stop many things from happening, nor help to fix them. This causes me a lot of emotional anguish. School really can't come soon enough at this point. A regular routine and some structure will be really great.
One last thing. Today was a great day for many people that I know and love. My great nephew was adopted by some wonderful people who will care for him and love him. I know that this was a terribly hard decision for my nephew and all of his family, but they did what was best for him, and his sister who was also adopted by another wonderful family. I hope that they all find peace in their decision. This was another answer to many prayers that have been said in their behalf.
Prayers are being answered all around me, and some for me/us. All I can do is try to hope that my/our diligent prayers will soon be answered.