It's been four weeks on the new meds and they aren't working. I know it is supposed to take up to 12 weeks, but I am just so tired. Physically, I am still having the same symptoms and emotionally, well, not doing great. Spiritually, I can't even describe the bottomless pit I feel myself in right now. In the back of my mind, I am getting scared that the normal medication for Lupus is not going to work on me. I don't want to be a medical black sheep. I want to be textbook. I want this medicine to work and I want to feel better. This has been the hardest year of my life and the punches keep getting thrown. I believe that God's assessment of "how much I can handle" is a little off. Not to take away from His knowledge, but honestly.
At any rate, I just needed to write this down, rather than just cry about it at home. I guess this is another late night vent session. :-)
Sunday, October 25, 2009
Tuesday, September 29, 2009
New Journey
Several of you already know this and many of you have asked. I am posting here and not on Facebook because only my friends read this and many of my "friends" on FB are really just acquaintances and I am just not ready for a big deal about this yet.
I have been diagnosed with Lupus and Chronic Epstein Barr Virus. The theory is that at some point in my life, I had mono or something in that virus family and the infection stayed active in my cells. I have never been diagnosed with mono, but it makes sense because I am so affectionate. Haha. That infection has caused the Lupus (in theory), which is obviously, at this point, incurable. Many, many people walk around with inactive Epstein Barr in their bodies, but for some reason, it just stayed active with me. This explains my hair loss, extreme fatigue, joint pain and other symptoms. I was diagnosed several weeks ago and have been to two different specialists and had the tests run and exams done multiple times. I am confident that the diagnosis is correct, but my immediate family is still in denial. I don't think any of us wants it to be true.
So, I wasn't ever going to write this blog entry, but I read a story on yahoo today about Lucy Vodder, the inspiration for the Beatles' "Lucy In The Sky With Diamonds." She died today at 46 from Lupus. She battled the disease for five years. FIVE YEARS. That's it. She was only 46 years old! After I read the article, I read the responses from the people below the story and saw many stories of those who had lost a loved one from this disease and honestly, I got scared. I have been scared this whole time. I don't think I am going to have a severe case of this disease and I don't believe that I am going to die in five years, but I also don't know what God has in store for me. When I hugged my babies tonight before they went to sleep, a little voice went off my head, "If you leave them in five years, will Lyla even remember you? Even if she does, will she remember this you or a disabled you that has Lupus?"
So, I keep having these conversations with God in my car when I am alone. I guess they are more like one sided shouting matches. I think that is okay - we are supposed to be conversational with Him, right? My faith has been shaken a lot this year, now more than ever. I have a hard time dragging myself out of bed and I am not afraid to say that my kids are what gets me to church. I am always glad to have gone, but my motivation level is lacking a bit. I keep thinking of those who have really had a struggle - those we walked for on Saturday, those who are going through daily struggles to just keep on living. I see myself as selfish for being angry about my diagnosis and I see myself as being weak.
Nevertheless, I am completely scared. I am anxious about what the future holds for my family and for my kids. I love them. I could live until I am 80 or I could live five years. I guess that is true no matter what, but there is something different when you know there is something inside you that could cause your death that is otherwise not in most other people.
I guess I am done venting. I don't need anything. I guess just some prayers - more for mental strength and spiritual strength than physical strength right now. I don't care who knows about the diagnosis, but I don't want people giving me pity eyes or avoiding me. I am still me, just me with Lupus. FYI - the Epstein Barr is not contagious and you can't get Lupus from me either. I guess I am beginning a new phase of my life. Not really what I had planned.
I have been diagnosed with Lupus and Chronic Epstein Barr Virus. The theory is that at some point in my life, I had mono or something in that virus family and the infection stayed active in my cells. I have never been diagnosed with mono, but it makes sense because I am so affectionate. Haha. That infection has caused the Lupus (in theory), which is obviously, at this point, incurable. Many, many people walk around with inactive Epstein Barr in their bodies, but for some reason, it just stayed active with me. This explains my hair loss, extreme fatigue, joint pain and other symptoms. I was diagnosed several weeks ago and have been to two different specialists and had the tests run and exams done multiple times. I am confident that the diagnosis is correct, but my immediate family is still in denial. I don't think any of us wants it to be true.
So, I wasn't ever going to write this blog entry, but I read a story on yahoo today about Lucy Vodder, the inspiration for the Beatles' "Lucy In The Sky With Diamonds." She died today at 46 from Lupus. She battled the disease for five years. FIVE YEARS. That's it. She was only 46 years old! After I read the article, I read the responses from the people below the story and saw many stories of those who had lost a loved one from this disease and honestly, I got scared. I have been scared this whole time. I don't think I am going to have a severe case of this disease and I don't believe that I am going to die in five years, but I also don't know what God has in store for me. When I hugged my babies tonight before they went to sleep, a little voice went off my head, "If you leave them in five years, will Lyla even remember you? Even if she does, will she remember this you or a disabled you that has Lupus?"
So, I keep having these conversations with God in my car when I am alone. I guess they are more like one sided shouting matches. I think that is okay - we are supposed to be conversational with Him, right? My faith has been shaken a lot this year, now more than ever. I have a hard time dragging myself out of bed and I am not afraid to say that my kids are what gets me to church. I am always glad to have gone, but my motivation level is lacking a bit. I keep thinking of those who have really had a struggle - those we walked for on Saturday, those who are going through daily struggles to just keep on living. I see myself as selfish for being angry about my diagnosis and I see myself as being weak.
Nevertheless, I am completely scared. I am anxious about what the future holds for my family and for my kids. I love them. I could live until I am 80 or I could live five years. I guess that is true no matter what, but there is something different when you know there is something inside you that could cause your death that is otherwise not in most other people.
I guess I am done venting. I don't need anything. I guess just some prayers - more for mental strength and spiritual strength than physical strength right now. I don't care who knows about the diagnosis, but I don't want people giving me pity eyes or avoiding me. I am still me, just me with Lupus. FYI - the Epstein Barr is not contagious and you can't get Lupus from me either. I guess I am beginning a new phase of my life. Not really what I had planned.
Thursday, May 14, 2009
Ch-ch-ch-ch-changes.
That title is misleading. I would like for there to be some ch-ch-ch-ch-changes, but no luck. Yet.
Eight years ago today I took a job working at GST for my parents. I promised them and Thomas that it would be short term and we would only stay for a maximum of two years. HA! I started out in the shop - I remember my Dad telling me I had to work my way up and start by getting my hands dirty. Apparently, this was only a requirement for his youngest child. My first 6 months in particular were spent wrapping pallets, driving forklifts, coming home sweaty and gross on some days and being immersed into a culture that was a far cry from the ultra political scene of the Campus Life office at ACU. Not that I didn't like ACU, but most of you know that working there really tainted my overall view of the university. That is another story for another day.
Anyway, so I started in the Shipping Department and then I worked my way into Purchasing, then Customer Service, then Accounts Payable, then Office Manager and now I am Corporate Controller. In the last eight years, my sister has come on officially full-time (after working on a part-time, but really more than that basis for many years), my brother came on and slid right into a VP role and we have expanded to three facilities. Thomas came on five years ago. In other words, what was once really just Dad, Mom and me (and Tonya on the fringe, but knowing a lot of the people and knowing what is going on) is now all of us. It is an interesting dynamic.
All of that to say - eight years is a long time. I really want to go on a nice, relaxing vacation.
Eight years ago today I took a job working at GST for my parents. I promised them and Thomas that it would be short term and we would only stay for a maximum of two years. HA! I started out in the shop - I remember my Dad telling me I had to work my way up and start by getting my hands dirty. Apparently, this was only a requirement for his youngest child. My first 6 months in particular were spent wrapping pallets, driving forklifts, coming home sweaty and gross on some days and being immersed into a culture that was a far cry from the ultra political scene of the Campus Life office at ACU. Not that I didn't like ACU, but most of you know that working there really tainted my overall view of the university. That is another story for another day.
Anyway, so I started in the Shipping Department and then I worked my way into Purchasing, then Customer Service, then Accounts Payable, then Office Manager and now I am Corporate Controller. In the last eight years, my sister has come on officially full-time (after working on a part-time, but really more than that basis for many years), my brother came on and slid right into a VP role and we have expanded to three facilities. Thomas came on five years ago. In other words, what was once really just Dad, Mom and me (and Tonya on the fringe, but knowing a lot of the people and knowing what is going on) is now all of us. It is an interesting dynamic.
All of that to say - eight years is a long time. I really want to go on a nice, relaxing vacation.
Monday, April 13, 2009
Sunday, December 28, 2008
HAPPY NEW YEAR
I just want to wish everyone a very Happy New Year. We had a wonderful Christmas and were spoiled by our families, as usual. We are so blessed and God has continued to keep us safe and relatively healthy this year. May the new year bring a time of renewed faith, good health and love to all of you. We are thankful for our friends - new and old - and may God bless each of your lives.
Love,
Thomas, Tami, Callie and Lyla
Love,
Thomas, Tami, Callie and Lyla
Monday, November 10, 2008
What Do You Think?
I read an article this morning regarding some of the things Obama will do with his executive power without "waiting for Congressional action." Some of the issues he is going to change immediately with his executive powers are removing any restrictions on stem cell research and closing off 360,000 acres of public land in Utah to prevent drilling. Regardless of how I feel about these issues, what was more disturbing to me were the comments left by 654 people below this particular story. The comments were varied, but seemed to be split 50/50 - almost ALL were attacking the other side in some major way. Not intelligent debate, just attack after attack from all sides. I realize after every election, there is this type of discussion all over the media and internet. This is especially the case when people are so divided.
So, here is my controversial question for the quarter...
Don't worry about leaving your comments - you can always leave them anonymously. I know many people who read my blog voted different ways. I want to hear what you really think. Don't hold back and don't just write the PC answer. I look forward to reading your thoughts.
So, here is my controversial question for the quarter...
Do you believe our new President-elect will unite or divide our country?
Don't worry about leaving your comments - you can always leave them anonymously. I know many people who read my blog voted different ways. I want to hear what you really think. Don't hold back and don't just write the PC answer. I look forward to reading your thoughts.
Saturday, November 1, 2008
Halloween
Before I discuss our awesome Halloween, I have a very important announcement....
For the very first time ever, someone came to the door to come out and ask if Callie could play! There are a TON of kids in our neighborhood, but since I was so sick during the pregnancy, we really didn't spend a whole lot of time out front with her. Last night, she played a lot with a little girl next door named Jasmine and Jasmine knocked on our door tonight to ask if Callie could play! It was sweet and made us feel good that she had so much fun with Callie, even though she is five and Callie is two. Anywho - it was heartwarming.
On to Halloween...
As you know, Thomas LOVES Halloween. Let me tell make it clear - he doesn't like cutsy Halloween. He likes scary Halloween. The scarier the better, BUT we had Trunk of Treats at church and I reminded him it was not appropriate to be scary. So, alas, we went as the Swedish Chef and Miss Piggy from The Muppets. He was HILARIOUS and my costume was perfect, in light of the number of pounds I packed on when I stopped being pregnant (because it was then that I was finally able to eat). So, the first set of pictures is from Trunk of Treats - Callie was a spider and Lyla was a ladybug! Also, note the awesome carving of pumpkins. I only did one - Thomas gets credit for the rest...
For our home celebration of Halloween, of course our house was all decorated, as usual. This year, Thomas built a graveyard and we went with a spider theme. As you can see from the house pictures, our spiders had captured a human in their web this year. It was pretty awesome! We played a track through our window that everyone thought was real. The BEST PART was Thomas as the undertaker. He wandered around the graveyard looking frightening. He was in charge of scaring the kids and I was in charge of softening the blow with giving them big handfuls of candy (with the girls) on the porch. We had a great time, but there was one problem - we have determined that due to Friday night football, we had about 75-100 less trick or treaters this year. We only had about 115 and that was pretty sad. We will still continue to do cool stuff though and hopefully, have more kids next year!
Thomas had an awesome idea to carve the inside of a pumpkin and let the candles show the design. He was going to do "redrum" and then determined the letters had too many curves for the short time frame he had to get it done. Can you read this one? I told you he likes scary Halloween....
For the very first time ever, someone came to the door to come out and ask if Callie could play! There are a TON of kids in our neighborhood, but since I was so sick during the pregnancy, we really didn't spend a whole lot of time out front with her. Last night, she played a lot with a little girl next door named Jasmine and Jasmine knocked on our door tonight to ask if Callie could play! It was sweet and made us feel good that she had so much fun with Callie, even though she is five and Callie is two. Anywho - it was heartwarming.
On to Halloween...
As you know, Thomas LOVES Halloween. Let me tell make it clear - he doesn't like cutsy Halloween. He likes scary Halloween. The scarier the better, BUT we had Trunk of Treats at church and I reminded him it was not appropriate to be scary. So, alas, we went as the Swedish Chef and Miss Piggy from The Muppets. He was HILARIOUS and my costume was perfect, in light of the number of pounds I packed on when I stopped being pregnant (because it was then that I was finally able to eat). So, the first set of pictures is from Trunk of Treats - Callie was a spider and Lyla was a ladybug! Also, note the awesome carving of pumpkins. I only did one - Thomas gets credit for the rest...
For our home celebration of Halloween, of course our house was all decorated, as usual. This year, Thomas built a graveyard and we went with a spider theme. As you can see from the house pictures, our spiders had captured a human in their web this year. It was pretty awesome! We played a track through our window that everyone thought was real. The BEST PART was Thomas as the undertaker. He wandered around the graveyard looking frightening. He was in charge of scaring the kids and I was in charge of softening the blow with giving them big handfuls of candy (with the girls) on the porch. We had a great time, but there was one problem - we have determined that due to Friday night football, we had about 75-100 less trick or treaters this year. We only had about 115 and that was pretty sad. We will still continue to do cool stuff though and hopefully, have more kids next year!
Thomas had an awesome idea to carve the inside of a pumpkin and let the candles show the design. He was going to do "redrum" and then determined the letters had too many curves for the short time frame he had to get it done. Can you read this one? I told you he likes scary Halloween.... So, believe it or not, now I have started planning Christmas! Plus, I have Bunco at my house this year, so the pressure is on. :-)
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