Thursday, April 23, 2009

Don't Like the Weather In Utah...Wait 15 Minutes

OK, so this is what it looked like outside exactly one week ago. We got anywhere from 6 to 12 inches depending on your location in the city. Really it shouldn't have been any big surprise that this happened. Spring in Utah is very unpredictable, except in the sense that you can predict weirdness.

This past winter has not really been any worse than recent winters, but it really did seem to drag on and became to many of us a long, cold, dark winter. People around here have been really hoping for Spring to come. However, Spring does make one think of April showers (Rain showers) that are supposed to bring may flowers right? Hmm, seems that Mother Nature has lost it!!

Those are flowers aren't they?? Just thinking something looks fundamentally wrong here.

So in comparison...

This is today. The same picture as the one above. Looks a little different doesn't it? Dan always says if you don't like the weather in Utah, wait 15 minutes. It is supposed to be in the 80's here today. I told you, Mother Nature has lost it. Chances are that it will at least rain in the next few days. Not only is this the forecast, my meteorological body is telling me so. We'll wait and see.
This picture is where we used to live. The yard is so pretty. Look at that green grass. Never mind the yellow grass at the bottom of the pic. Dan has been busy and I can't go do yard work like I have in the past. I have been one that loves to do the yard work and prides myself on having a gorgeous yard, Dan is as well, but the last couple of years have been hard on us, so our poor yard has suffered. Hopefully I will be posting a comparison pic of our yard soon. I have capable children, but they aren't interested in doing yard work right now.
Well, I just wanted to post something that was on a lighter note than the past few have been. I am feeling better right now than I have for the past few weeks. All I can do is hope that this upswing continues. I am still not backed away from that wall totally, but have it in reverse, trying my best to do it. Thanks to those of you who have made phone calls and comments to let me know you are thinking of me. It helps more than you know.

Friday, April 17, 2009

A Glimmer of Hope

So today I went to this place and was given what they called a "Functional Capacity Evaluation". I have not been happy about having to do this since I was told I would be required to. This is something that the insurance company that has had to pay me Long Term Disability decided was a must because as of yet I have not been given an official diagnosis. If there is no official diagnosis, I must be faking it right? My case worker at the insurance company called me the day all of this started again. Funny how she just knows to call when I am in the middle of a crisis. This is not the first time she has done this. Anyway, she called and told me I would have to do this and that there would be people contacting me with an address and stuff. "OK, whatever I have to do" I said. Next thing I knew I received a letter in the mail telling me that I had to go to Murray to do the test. (For those of you who have no idea where Murray is, it's like 30 miles north of here, straight up the freeway) At this point I was still able to drive around town, but haven't driven on the freeway hardly at all for like 2 years. I get severely motion sick and fear passing out and it isn't safe for me or anyone else on the road when this happens. So I called back the insurance lady and told her she would have to either find me a place around here, or find someone to drive me. Dan had other obligations today. So much to her unhappiness she arranged transportation for me. A van showed up to get me at 6:45 AM this morning and took me there. I have been worried sick about what these people were going to try and make me do. Thinking that I would severely hurt myself trying to prove myself.
Much to my happiness, the guy that did the testing was wonderful. He reassured me that I could stop at any time, but that trying to do things showed effort. I am a pretty determined person(No comment from the peanut gallery) and would like to gain back some credibility so this was great. I at least attempted to do everything. The test that was supposed to take 4 hours took something like 1 hour and 45 minutes. He never told me directly, but when I asked him why it didn't take as long as we thought it would, he said that normally it would. He also stopped me several times when he thought I was overdoing and becoming dangerous to myself. While many of you may be confused at why this makes me happy, I don't like being totally incapable of doing things, but VALIDATION is soooooo great. I couldn't even simply just sit without falling over. He did say that I was clearly pretty messed up. He also has stated that he disagrees with some of the diagnosis of the past, but that he isn't a neurologist and specializes in physiology/therapy, so his opinion doesn't hold much bearing. This being said, I am just hoping and trusting that he now reports what he said to me. My arm swelled and my leg buckled under me and my heart rate was very high, and everything. Usually I seem to get a second wind or something when these things happen. Anyway, now I just wait for the verdict.
Well, I hope that this doesn't make me sound crazy, but more and more now people are starting to understand and see that I am really sick. This gives me hope that maybe some one might figure it out.
Thanks to those of you who have let me know that you are caring lately. It really does help me to see things a little more clearly. Still have a ways to go, but working at it.

Thursday, April 16, 2009

Hope I Still Have Some Friends

I know that the last few posts that I have put on here have been very negative and sometimes pretty mean. I hope that I haven't run off the few people that still care. There are a lot of things that I have written on here lately that I have been keeping to myself for way too long and they had to come out. I love where I live and my family and friends and neighbors, but like my kids, sometimes I really don't feel that love in return. Anyway, that said, I am hoping that soon I will be able to see things in a different light and gain back the faith and trust that I need. The hope is there, I am just too tired to fight for it now.
Life for me has been on a downhill slide for way too long and really the truth is that I can't see it getting any better right now. Like Dan mentioned in his post, I am a 36 year old woman that has the capacity of someone more than twice her age. I didn't ask for it, and am not faking it. I am however very scared that I am losing the battle and will not be given any help until it's too late. I have now entered the place where I am immensely afraid of this. I was a pretty put together person before this, now I feel like I have gone to the place of no hope and discouragement. I had heard nothing but wonderfulness about this doctor I saw yesterday and then didn't feel like he even gave me the time of day. His PA examined me and they looked at MRI films, but that's it. They say they are still looking, but gave us the distinct feeling that they think I am embellishing my problems. He was no different from the rest. This is what I mean by no hope for help. Either the docs that want to help can't because of a limitation of knowledge or the ones who can just don't. Seems that if it doesn't jump out in the first look, then there is no reason to look any more. I have never been "normal" physically so I am too much to deal with. Tomorrow I have to go be tested to see what my functionality is. My hope is that I will finally be able to show people just how limited I am. Problem is, just like the entire experience with this has been, this test is simply to prove that I could do something to make money. One of the letters of decline from SSI said before that I could do a "mindless" job. So I pretty much have no hope for a good turnout, and am preparing myself for more rude treatment from people thinking I'm faking it. Yes, I typed this blog, but it took me several hours do to the fact that I have to lay down every few minutes. If there is a job like this out there, I'd like to know where. Being told I can do "mindless" things tends to make me feel bad.
Well, I was hoping for this to be a more positive post. Sorry, but I hope some still want to be around me. My intentions were not to run people off, but just the opposite. Did however need to get some things out there. Thanks for reading.
~ Christy

Spring in Utah

I apologize for my photography skills, most of these were taken with my phone while I was scrambling to get to work this morning.

In other news, we went to an MS specialist in Salt Lake yesterday. This Doctor was the same as the rest, we can't rule out MS, but we don't think that is what it is, must be stress related. The doctor from the instacare told us that this is not stress related, that a neurologist needs to find the root case, it is just a circular suckhole of the medical profession. Christy is now to the point where she can't drive, and can't even walk around the house without pain. She is going tomorrow to an functionality evaluation that is going to make her so tired and in pain that she will not be able to function all weekend. So tired of doctors that can't figure it out, so they say it must be stress, the medical cop-out. I felt to me yesterday the the doctor found out that Christy had applied for social security, and he just gave up, like he thought she was overstating her symptoms in order to get on programs. Wow I hate doctors. Seems they have their mind made up before they enter the room. This one just said to go to rehab and gain some strength back on the right side. Its like he didn't hear anything that Christy had told him, like that she has been to rehab twice, got almost all the way better, and then lost it all again. She is so frustrated, and we just do not know where to go from here.

Tuesday, April 14, 2009

More Tests and Doctors

OK, so I know tha last post wasn't so pretty. Something that needed to be said though. There are some things that people need to know that are going on. After doing this, I found that there are more people than previously thought that have gone through some of the things as far as acceptance that we have here in the recent past. I am sad that others have had to deal with so much judgemant and non acceptance. This is not the way things are supposed to be in the place they call "Zion". With that said, I will try and stay off of that soap box for a little while anyway.
Tomorrow I am going to see a doctor name John Foley. He specializes in MS and other rare neurological issues. I have been on a downhill slide for months now again, and things are finally culminating together and doctors are realizing that this is real. None of them can figure it out yet, but at least they are admitting that it is real and it's not in my head.
On Sunday night, after having felt terrible all day, I finally checked my blood pressure. I checked it on one arm and got a reading of 227/196, shocked that this could not possibly be correct, I took it on the other arm for comparison. Got a reading of 197/162. At this point, Dan said "We are going to the insta care to have this varified and hopefully it's not correct". My BP has always been very good except when it is just before I have one of these "strokes". Also, I have been put on BP meds to control headaches. Seems like they aren't helping much huh? I haven't been able to walk very well for several weeks and by the time I got to the doc, my hand and arm were swollen and losing function as well. Also it was hard to hold my head up and my vision as blurred. They took my BP there and as always, it wasn't that hi anymore, but the doc was very concerned and almost admitted me to the hospital. After much conversation and explaining to the doc that there is no one around here that will help me, he sent me home with a stern recommendation that I see a doc out of UT county. This doctor was wonderful. He reported exactly the same things in the computer that he told me, which hasn't happened very often, and he reassured me that this was a serious problem that is not caused by stress or in my head.
Yesterday I went to the doc I have seen since the first problem. He is a physical medicine/rehab doc. He had sent me for an MRI last week and I was there to get results. Of course they showed "Nothing" as they always do, but he also encouraged getting another opinion and was so sweet in saying that you can't fake swelling and other things that I have. He is starting me in some kind of therapy that is supposed to help with the dizziness. I hope it helps. I can't drive any longer and can barely walk from room to room. Doesn't help that my leg is weak as well. I appreciate that this doc is FINALLY validating the problem as well. I wasn't crazy when this all started but have been feeling like I am close to being that way now. Validation is HUGE!!
Anyway, I had better go now, as my hand and arm are starting to swell again. I ask for your support and thoughts on my and my family's behalf. I am trying not to put all my stock on this doc, but hoping that he will be able to finally find a way to help me. Thanks to all of you who have said nice things and showed concern on our behalf.

Thursday, April 9, 2009

Turning it Over

Sorry, this will be a long one, and probably not the most pleasant read.
Throughout my life I have been given advice many times that I had to "Simply" let go and turn things over to God. While I know this is the greatest advice, and is correct I have to question the use of the word Simply. This is no simple task, in fact it is very hard to do. Hard enough, that I am struggling to make myself do it this time. I have been a person that has been very strong in my faith and always known that I am not alone. That there is someone watching over me and my family. My word, I have even been visited by my Grandmother who died 11 years ago who told me to just ask for help and there would be people waiting to help me. My faith is very much shaken right now, and I really feel like my family and I are alone, trying to deal with things that are unreasonably hard. There is being tested and then there is us. We do not deserve what we are being handed to deal with.
Many people say that you hit a wall sometimes where you just can't go any further. I have hit that wall. In an earlier post, Dan said "Just when I thought there was hope for spring, we get dumped on again (this may seem like a life metaphor, but I will not go there today)." There is ample reason for him to notice that this is a life metaphor. This is no joke in our family. It seems that we can never just be OK. There is always something holding us down. Dan has gone there now and so have I. You will not find a man who works harder and does more for his family than Dan.
Later today(since it's 2:16 AM) I have to go for yet another MRI. After returning from our trip a few weeks back, I developed a problem in my right leg and now I can only walk with the use of a cane. This resulted not from running or doing something stupid, it is from sitting and riding in a car with a husband who was so concerned that this might happened that he kept making me move around and walk. I must remind you that I am only 36 years old. Since Christmas, I have lost the use of my arm, and gained partial use back, had approximately 3 migraines a week, and dizzy all of the time, and now this? I am literally going backwards from all of the time and effort and therapy I have done over the past 2 1/2 years. No one knows what is wrong. They tell me one horrible thing after another and then say that they have ruled it out. I am now back on the same medication they put me on right after the first incident. Not only is this physically draining, it has really hurt us financially in the respect that I cannot work and I cost a lot more now health wise. There is no way to explain the emotional strain that this situation has put on me and my family. Since there is never a diagnosis, I am always told that is must be stress or I am faking it. LET ME REASSURE YOU, I AM NOT FAKING IT! I would not put my family nor myself through this. It is tearing us apart. I have insurance carriers and people who are now making me be tested to see how I function and try to prove that I can do more than I can.I see looks and hear whispers and get the fake sympathy or the "Your not doing what you need to" or "You made your bed" lectures. My opinion is that people need to walk a day in my shoes before they lecture me. We need love and support, not criticism. This is where I generally say, OK, it's time to turn it over. I am going on 3 years of this!! I have held callings, supported my husband in callings, encouraged my children to love the church, I could go on. I can't turn it over this time. The worst part is, after I get done writing this post, and post it, there will be my friends and family who read it and become very concerned, which I appreciate, but the ones who say they will be there for me to lean on, probably won't even read it. ROSE, I DON'T MEAN YOU HERE. YOU ARE MY BEST FRIEND!! They will say, well there's Christy whining again. PLEASE, KNOW THAT THIS IS NOT ME. I AM NOT A WHINER. I NEED FRIENDS WHO LOVE ME AND WILL ACTUALLY BE THERE FOR ME. I am always there for whoever and whatever I can be. Even when I shouldn't be. I don't like feeling this way but I see no other option anymore. Understand that if I am not doing things I normally would be, like going to church or the gym, it's probably because I shouldn't be there.
Dan and I decided to move to St. George and this is still the plan at this moment. I really feel that things are going to work out the way they have been planned to with this, but news that Dan mentioned in the previous post is really putting a heavy burden on him. This poor man has done nothing but work himself sick, and worry himself sick. It is not fair that he should have this worry to add to what he is already dealing with. His mother has been in the hospital for the major part of the last 3 months, Kyler has been struggling and we almost lost him, until a month ago, Dan had a church calling that weighed on him greatly, and then there's me. Enough said. I Love Dan so much. He doesn't deserve this. I watch many people struggle and see men or women who don't take their responsibilities seriously. Ones who feel that they don't need to help their partner, or their neighbor for that matter. They always seem to be the ones who come out on top though. How is that fair? I feel honored that I have a husband who loves and cares about his family so much that he literally does whatever he has to to make sure we are loved, comfortable and provided for. Makes me wonder how I deserve him.
I have 4 kids that are all struggling somehow with the same problem. They all handle it, or not, in different ways. I would expect this and they are all individuals with their own personalities. Why do they struggle with things so much then? What have I done or not done to make them feel this way? Kyler has his own struggles on top of the normal ones. I really feel for him. He is a good, friendly person who just want to be accepted and treated with respect, just like everyone else. He has had a horrible experience as a youth here. He has tried to fit in and we are aware of some quirks that are hard to deal with, but he has one or two friends and is shunned and treated as if he had 2 heads by many of his peers, and some adults. We are so proud of him especially right now. He spent the first 2 weeks sick and in the hospital last term and almost lost his life. He worked hard and passed all of his classes for the first time in a long time. He recently got his driving permit. This is a huge accomplishment for him. Megan is a volleyball playing fool. She is really good. She struggles as well though. She loves everyone, but trusts that people will treat her the same way and has experienced a lot of heart ache as well. Aubree is like Megan in that she is very trusting and gets the same result a lot. Aubree has a hard time understanding that she can't convince people to like her. As does Kyler. Jake is such a good kid. He really will do anything for anyone. He loves his family and his friends, but as with all of them, he doesn't know how to deal with the hurt when someone doesn't love him back. This decision to pursue a transfer and move was not made just for me. We know that this will be a problem that everyone needs to deal with and that it is everywhere, but hope that a fresh new start will help our kids and us as well.
I also found out this week that my dog Buddy is sick. I am hoping the the medication they gave him will help him to feel better. He is my sanity much of the time. He loves me, he doesn't care if I look bad or can't walk right or whatever. He hugs and kisses me when I need it and especially when there is no one else doing it. I hope he is OK. I don't know what I would do if I didn't have him.
I hope this hasn't annoyed, or alarmed anyone. I just needed to get some things off my chest. Know that I am still fighting for myself, but very much weakened. I love my husband and my family and all of you who truly are my friends. I do feel your love. I am just struggling.
I want Rose to know that she has been there for me and done more for me in the 1 year I have known her than she can possibly imagine. Sometimes just having a partner in crime is the best medicine. I know I made you cry now, but it wouldn't be worth saying if I didn't.
Thanks for listening

Wednesday, April 8, 2009

We made a trip down to Southern Utah to check out the area and get a feel for the layout of towns. We spent some time driving around St George, starting from the ORS office and working our way up St George Blvd. We then went down to Las Vegas and spent a couple of nights at the Excalibur. The sun was shining, but the wind was blowing like crazy. We still managed to spend a few minutes out by the pool. There was road construction going on across the street all night, and the jackhammer woke us up a few times. We went to some buffets, a wax museum, a shark tank, and to Margaritaville. We did not go in as there was a long line and the prices were pretty high, we are parrotheads and love the music of Jimmy, so this kinda a fun place to visit. We are planning to make a move down there (to Washington County) in August, before school starts so that the kids can start school in St George. We are going to try to rent a house there, and rent our house here.

The annual director’s visit happened at my office yesterday. He offered the information that there would be 60 lay-offs in my division. That makes 12-15 people from my office alone. I am number 8 or 9 from the bottom of the list of seniority. The director has stated that the lay-offs will not be based on seniority alone, but on performance as well.
Part of the stimulus package was given to the state legislature, but in a last hour bill, the money to be given to our agency was blocked. There were no strings attached to this money and so it has just been left on the table. The Governor’s office is working with our office to free up that federal money, even though the bill that blocked it is now law. If the money is released, I may still have a job on July 1st; if it is not, I will most likely be unemployed. On the positive side, there is probably a good market for collection agents right now.