Saturday, June 27, 2009

I Am Lucky to be Alive

Well, since the last post, I have had my tonsils removed and the back and top of my throat reconstructed. It has certainly been an experience. I must say not as bad as I was thinking it was going to be, but not something I would enjoy doing regularly. Tonsillectomies are usually thought of as a childhood thing, but in my case, no, I am 36. I started asking to have my tonsils removed when I was like 10 years old. The docs had removed my adenoids but for some weird reason they left my tonsils. It has been something I have dealt with since. I felt horrible the other day as my father was apologizing to me for not being more assertive with the doctors then and I wouldn't have to deal with it now. It's not their fault. Believe me, most doctors seem to just do what they think is right with no regard to the patients feelings. There are a few of them out there though. I think I may have found some FINALLY!!!
On Tuesday, I was accompanying Kyler to the doctor while waiting to find out when I was supposed to go to the hospital for surgery. During the time I was there, one of my docs that I have seen since the beginning called me to tell me that he had written a letter and stated some specific diagnoses and that they were valid for the stipulations that Social Security had given me. This was great, as he pretty much stated everything in that letter that was questioned and still managed to maintain my dignity. He said that he was angry that this had gone on so long and that I deserved to get what I need, which I have worked for and earned. To be fair, he has always been good to me. Then I heard from the hospital and was told when to be there. We got ourselves together and went to the hospital, at which point things were REALLY different than they have ever been. I went in there and people smiled at me and were making jokes because the BP cuff wouldn't work, then the doctor came in and took me to the little room and talked to me for like 20 minutes. He explained to me in great detail what he would be doing and why and then told me in great detail how the recovery would be. He asked me what I would like to do about medication and then did what I asked of him. THIS WAS A SHOCKER!! I wasn't at the hospital 30 minutes before they had me in the operating room putting me to sleep. It was sooooo nice to not have to sit and starve and wait for hours. Then to have the doctor actually chat with us and listen to me, well I haven't had that experience for a very long time.
Fast Forward to post surgery. The doc came out and spoke with Dan and told him that the surgery took an extra long time because my tonsils were very badly scarred. He said they were hard to get out, but that everything went well and I was doing fine. This is information that we kind of expected. After 25 years of problems no one could really think they would be pretty. I went to a room and then I remember Dan being there and then my parents showed up I think and then my sister and brother-in-law and my nephew. I have no idea what they said or what I may have said. Everything was and is still a blur until about midnight that night. I do remember thinking that it was cool that I could actually talk. I thought I would be whispering for a while. Too bad for my kids, my voice is a little weird and quieter, but not silent.
The plan was that I would go home on Wednesday after having been observed overnight. These plans changed though. Wednesday morning I starting throwing up and could not keep anything down, even the medication. Let me just tell you. There is not much worse pain than throwing up after throat surgery. Anyway, the nice nurse gave me some meds through my IV and I slept for a while. I woke up a few hours later when they were trying to give me more meds and decided to mix them in something like yogurt so I wouldn't choke trying to swallow them. This seemed smart and worked for a while, but then I got even sicker and could hold anything down including my temperature. Then my face started getting numb and tingly,OH THAT OLD FAMILIAR FEELING, at which point the doctor called in the big guns to check me out neurologically, worried that I was going to have a stroke or something and considering my history this was scary. After all the fun and games, it was agreed that the antibiotic was making me sick and that the numb and tingle was just how my body reacted to the shock of throwing up after throat surgery. The problem has now been solved with giving me nausea medication when I take the antibiotic. They kept me until Thursday though, just to be sure. Here is where the really scary conversation came. The doctor came in to see me on Thursday morning and chatted with me for a while. We had briefly spoken before of my history of the past 3 years and he had expressed that he thought my tonsils could have been a part of the problem. As he spoke to me this time, he said that he was amazed that I had not died in my sleep and that he had not seen tonsils that were that scarred and mangled before. That I was lucky to be alive and that my tonsils were probably a huge part of the problem. He cautioned me to not put all of my hope in the "tonsil" fix, but that there really wasn't any way that I could breath properly and especially when I slept. That he would be interested to see what results this might bring for me. He was appalled that no other doctor would listen to me plea to remove them, that the excuse of me being an adult and the life threatening part was worse by them doing nothing. He actually said I had been done an injustice and that he hope that he had at least done a small something to help me. I literally walked in to the office and met this doc and he did surgery all in less than a week. I believe I was being led, FINALLY!! My neurologist keep digging as well and I believe he is doing a good job of trying to help me as well.
Dan has now told me that he worries because he can't hear me sleeping. That I don't snore or gasp for air or anything. Just sleep. I have myself noticed a drastic change, it's nice. Although I feel bad that Dan has to worry about me so much. He has been wonderful to me, I wonder a lot how I found him and remain deserving of him.
I am hurting, but nothing unbearable and I know it will pass soon. It's nice to have a glimmer of hope. Even though it's a cautious one.
Thank you to all of our family and friends and ward members. There has been an outpouring of love to us during this time. Especially thanks to Nicole and Cameron for keeping Jake. There is no way to express how much we appreciate knowing that he was cared for. They are still unpacking from moving and did this for us. We really do appreciate it.
Well, I guess now that this is a novel, I shall sign off. Stay tuned for the update on Dan's knee surgery on July 9th. YES, I AM TOTALLY SERIOUS!! We do everything together :-)

Saturday, June 20, 2009

Those Tonsils are HUGE!!!!

OK, so the last week has been even more of an adventure than usual.

Our washer died like a month ago and we have been toting our laundry back and forth to one or the other of our parents for all of that time. It had become quite a pain, even though Dan's parents are close by and they let us use their machines. Last Saturday Dan and I went Washer and Dryer shopping. The first place we went was the Home Depot and we found the set we wanted and it was all on sale, but we thought we should shop around a little before making a decision. Megan had been gone to Girl's Camp for 5 days and we had to go pick her up and it was an all around busy day. Kyler was in the Summerfest parade and had to be delivered there, etc. So with the all of the busyness and the pain in my neck, I was pretty much had by the time dinner( which was yummy cheddar and broccoli soup than Dan made) came around I was really suffering. In the previous post written by me I gave details. It takes me a lot to go to any kind of ER care now. They never can find a problem and I get sent home crying without any help and being told I'm nuts. Sunday was a horrible day. I don't think I have ever had a day that I have felt that low. I really just didn't care for trying anymore. I had had enough.
One thing that the Insta care doctor mentioned to me was that I have extremely large tonsils. That they could be contributing in large part to my sleep problems, and therefore could be part of the larger problem with the paralysis, etc. He told me to look in to visiting an ENT. On Monday I saw the neurologist who of course told me that the tests I had done previously were normal. SURPRISE SURPRISE...NOT, anyway, I asked him as well and he said it might be worth looking into. In the mean time, I had a brain, heart, and neck ultra sound, and a tilt table test done. I feel as though I have lived in my car.
So I made an appointment with Dr. Riddle's Physician Assistant and went on Thursday. I went in to the room and she looked in my throat and said, "Those Tonsils are HUGE!!" "They're coming out, anything else?" They asked me a couple of question and it was determined that I will be having my very huge tonsils and the Uvula (The dangly thing in the back of your throat) will be taken out on Tuesday the 23rd of June.
Now, I have been trying to have my tonsils removed since I was in the 4th grade when my adenoids were removed. No one is sure why they didn't take both, but whatever. It's amazing to me that after all of the years of begging, I didn't even have to say anything to this doc. I have a small part of me that thinks that this may solve many of the current problems, but I also understand that it may just cure one. I am keenly aware of the pain that is coming and can only pray that it will be minimal and I will recover quickly. I am starting to get a little nervous, but trying to be a big girl and deal with it.
My hope is that things will go smoothly and I will be able to do some of the things I haven't been able to for a long time. Like singing high notes.
Thanks to all of you who continue to read this blog and show care and concern for me and my family.

Wednesday, June 17, 2009

Christy told me to write a post so that people know I am still alive...

I was thinking about my children’s future and wondering if every generation looks at the world that their children will inherit and questions how they will be able to survive the society of the future. It seems as if the world is going broke, both financially and spiritually. I have to think that the parents of the 60’s generation spent most of their time shaking their collective heads. The technological advances amaze me, but the lack of morality disturbs me. I am not just talking about sexual morality, although that seems to be a major issue now, but about how we treat our fellow man. Much of the financial trouble facing our world is the result of people hurting other people for money. “Get rich or die trying” is the title of a rap cd, but it could be considered the Wall Street slogan. My religion teaches me to be industrious, prosperous, to live within my means, and to use any success that I experience to help others. A great example of this is my Father-In-Law. He has worked his whole life and has never shied away from anyone that he could help. One of our church leaders, Elder Uctdorf, said that business is a wonderful means of supporting ourselves and our families, and that business transactions should be such that they are mutually beneficial and profitable to all involved. Greed has evolved our financial system to the point that the government has to step in and restore checks, balances and oversight to make sure that the few are not taking unfair advantage of the many. We occasionally watch the game show Deal or No Deal. The one thing that that game show is built on is greed. People just can’t stop themselves from trying to get more money. Government run health care is needed because it takes the profit out of medical care. Anytime that one group of people profit from the death of a person, a moral issue is raised. Opponents of government care state that it is taking a person’s treatment out of the hands of the doctors and the patients, and put it in the hands of a bureaucracy. Medical decisions have been out of the hands of the patients and doctors; they have been in the hands of the profit-seeking insurance companies for a long time.


Sunday, June 14, 2009

That's What I Get for Trying to Think Positive

Well, since I get VERY tired of always being sick, I was really trying to think positively about having found this new doctor and even had a little (looking around to make sure no one heard) "hope" that I may be getting better soon. Well, just like the way of my life, Murphy's Law said that this could not happen.
Friday night I found this tiny little bump on the back of my neck. Right where my skull ends. I didn't think much of it. I woke up Saturday morning thinking that it seemed a little bigger and almost like it had become like a hard golf ball or something. I tried to ignore it throughout the day, but was getting increasingly more worried because it was getting sore and spreading. Finally Saturday night when my throat started swelling and my eye started swelling and I was coughing constantly and the whole side of my face was swollen, we decided I had better go have it looked at. Dan and I went to the Insta Care, where unfortunately they know us by sight I think, the only lucky part of the night was that I got the same doc who treated me before. He was very nice. He tested me for strep, which we all knew would come back negative, (Remember, Murphy's Law is all about me) but he sent it out for a culture and is treating me for it anyway. He also thinks I have Shingles of the head, (Which are horrible on the stomach, I had them as a child) so he is treating me for that, but ultimately he diagnosed Lympholic=-*(*&^&^$##$^ (a word no one understands). He said it's a diagnosis that means a problem with a lymph node of unknown cause. GREAT!! Now things are growing out where they can see them and they still can't find a cause. GRRRR
So, long story short, Dan had to go all the way to Provo to find an open pharmacy and I am on HUGE doses of antibiotic and steroids for inflammation. Lovely. Take pain meds for the pain, which is horrible. Now I have pain on both sides of my neck, but the steroids pretty much counter act the pain meds so I just get a headache instead of sleep, and if I did get to sleep I can't lay on either side or my back because of the pain and swelling. This leaves me face down in a pillow. I know it isn't a nice thing to say and that it scares some of you, but face down in a pillow has been what seemed a problem solver today.
I am SOOOOO tired of being sick and just having new things piled on top, that I have really hit the point of just wanting it to end. I don't dare have hope that the doc will find anything he can help me with, I have been let down too much, and can't seem to get even more than a few hours where I don't have thriving pain somewhere. Poor Dan would not leave me alone anywhere today. I feel bad that he has to deal with me like this but can't seem to find my way out. I wouldn't do anything rash, but really have no hope of ever feeling better. I have tried to have a positive attitude and to leave it to God many times. Everyone tells me that it's just me not being patient, but really, 3 years? I would like to see what those people looked and felt like after 3 years of constant pain and sickness, and that's just me and my sickness, I'm not mentioning everything else. I would like to be able to say that I was sure that will look back in ten years and see the growing experiences, but at this point, I just have to wonder if I will be looking back from here or down from another place. I really am trying. I am just really not feeling any hope for my future.
Sorry for once again a downer post.

Sunday, June 7, 2009

Just Random Thoughts

Today is my parents 53rd anniversary. While it seems like 53 years is a very long time, my parents seem to have done it in such a way that it looks like an easy thing. This picture is of them at their wedding. They were married in 1956. I think it's great to be able to look back at these pictures and see things like this. They look very happy and with all of their lives ahead of them. I am told that I look just like my mother. I do see some resemblance.
A more recent picture (I couldn't find one on my computer more recent. I think this is like 1991)

The picture above is of a more recent time. I wish I had a more recent one on my computer but oh well. Now my parents have 23 Grandchildren + their spouses and significant others and 11 Great-Grand Children. One was just born this past Thursday. His name is Rylan D. Casper, the son of Rickey and Erica.

I look at the picture of them at their wedding, and then type this information of their posterity, I wonder if they had any idea that they would have this family. The headaches of losing a child and watching their other children go through difficulties. It amazes me and I think it shows how dedicated and loving they are to each other and their family. We all have our normal life challenges and struggle at times, but we are all pretty happy and well grounded. We now all live within 30 miles of Mom and Dad and get together at least once a month. Hopefully they feel proud of what they have accomplished.

So this turns me to Dan and I...

Obviously this is a picture of Dan and I at our wedding. So much ahead of us. Looking happy and dreaming of the life that is to come. Not knowing where we would be and how things would turn out, but determined to love each other and get through things together.

So now it is 2009...

The picture seen here was taken in February of this year. We are a little bigger and older, but I am happy to look at it and see happiness. Dan and I are going to be celebrating our 20th anniversary this year. The 53 years mentioned above for my parents doesn't seem so unreachable anymore. Dan and I have been through some pretty rough things, and continue to experience them, but we are very strongly bonded together and hope to show our children that we are. We have contributed 4 of the above mentioned grandchildren. We have none of our own since our oldest is only 15 but look forward to this in the future. I know that the teaching and examples of both of our parents have helped us to be able to make it through some pretty tough times. Who would have thought we would have the challenges of special needs children and our own health. We keep enduring, even though sometimes we forget the rewards at the end, and our love for each other and our family is what brings us through. I hope that our family will enjoy spending time together when they all have their own families as well. Thanks for the example !

Tuesday, June 2, 2009

More Tests...FINALLY!!

Well, I visited yet another neurologist yesterday. He was actually very good to me. He has reassured me that this is a physiological problem and that he will do his best to find it. He said that he could tell by looking at me that something is wrong with me structurally. I have been begging for docs to redo some tests forever. They say they were done once and that's enough. My argument has been that things change in 2-3 years. This doc suggested that some of them be done again to see if things have changed. Ahhhhhhhh, this is so good to hear. Even if he can't find whatever is wrong, I will know he tried. It has been unbearable being told that there is no problem so it must be psychological. I may be trying to deal with a lot of stress and not always doing it the best way, but I would ask, "who in my position would?"
So to continue my quest for answers, tomorrow morning I am going to have another nerve conduction test. For those of you who are not familiar with this, it's the one that they stick needles in you and then send an electrical shock through them. It is to see how the nerves react to the stimulation. Not my favorite thing, but if I must do it to help find out how to get better, then so be it. Also, it helps to prove to the docs that I am really sick, not faking it. I don't think even some one who was would put themselves through this.
On Friday, I will be having an EEG. This test is one that you have to be sleep deprived, so Thursday will be an all night er, and then they stick electrodes all over your head and flash lights and stuff to see if you have seizures and stuff. Also to see how dizzy it makes you, etc. This one isn't too bad, but Dan will be snapping pictures of me looking like an alien and then probably post them on here and Facebook. LUCKY ME!!
Also, I have had a bunch of blood tests. This doc is being very thorough. This makes me happy. I am quite nervous that everything will come back "normal" and we'll be back at square one again. The sickness Nicole and Alta came found that I blogged about previously is still a possibility. The doc said he won't rule that out as it really fits, but that he wants to be positive it isn't something else, or in addition.
It's so nice to have a doctor who is taking this seriously. He is aware that I have been turned away and all of the goings on of the past almost 3 years and actually believes me. He isn't the most personable guy, but I don't care. He can be the orneriest straight faced guy in the world. If he helps me, he's the man. I also have the Neuro Psychologist that will back me up with a Neuro psychological disorder in addition. His comments are that the psychological didn't cause the sickness, but has become a symptom of it. If I have to rely on the psych diagnosis to get things pushed through I will, but I know in my heart, and now I have more than one doc that knows I have a real physiological problem. This is hopefully the road to finding the answers to the past several years of my life.
I know I don't succeed much on doing this, but I am really trying to be optimistic about things. It's very hard some days but I do have a little bit of hope now. Trying to see an end to all of this is a challenge. I hope that things will continue to improve for me and my family. Many in our home are struggling, but I am trying to understand the lessons that need to be learned.
I hope that our friends and family will continue to want to be with us. I know it's hard sometimes, but we all need each other for support in good and bad times. That's what it's all about right?