Whew! A lot has happened since that last post. I did get the results of all of that bloodwork, and I have autoimmune hepatitis. The doc believes that I have had it for some time. So, there we have it...nothing I can really do about it.
As most of you know, the entire first semester of school I was very, very sick. I finally went on family medical leave to give myself some much needed rest, and to allow the library to have a substitute when I was out, which has been a lot. Of course, the sicker I got, the more Steve and I prayed that the Lord would give us a solution to this problem or heal me completely. He did give us a solution, and that was to move--quite rapidly!
A church contacted Steve and moved unusually fast to get him voted in and moved so that he could start at the beginning of January. We have been here two weeks, but in some ways it feels like a lifetime. I quit my job, leaving behind not only people I loved, but my insurance and salary as well. The church made concessions that were certainly a God thing that allowed us to come. His hand has been all over this! We are excited about the possibilities here, and it has given me the rest I need to get well. My stomach issues are almost gone.
I've lost 60 pounds, with a good bit more to go, but I'm so proud of that accomplishment I could bust! I hope to start taking daily walks when the weather warms up a little. It has been bitterly cold, and the one symptom I have from my liver disease is that I can't get warm. I wear gloves in the house, y'all! If you have known me a while, you know that I have always been very hot-natured. No longer, I'm actually ready for some warmer weather.
We are excited about what the future holds. I'll be getting back to my posts about the stages of grief soon. It feels good to write again.
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3:20-21
Wednesday, January 14, 2015
Wednesday, October 22, 2014
Stage 3
Boy it has certainly been quiet around here, huh? I honestly haven't had the gumption to write anything, and today is really no different. I have definitely hit the depression stage. It happened unexpectedly about two weeks ago. Wham-o and there it was!
For me, that means not really wanting to talk about what is going on or how I feel. Who really gives a crap? I feel horrible for not being able to perform adequately at school, and not really wanting to do anything meaningful once I get home. So basically, I'm just here.
I did take a trip to Medical College of South Carolina yesterday to meet with a doctor there. The hope is that he can find out what caused the disease and possibly slow it down. He took 14 vials of blood, so surely something will come out of that. I have to call him next week to get the results, but I don't have to see him again for 3 months.
I have to have an ultrasound every six months to make sure that cancer is not present. There is an increased risk, albeit small, that I could develop it. If caught early enough, I would immediately go into transplant mode. The biggie is that I have to lose some more weight to even be a candidate for a liver. The eating is not really the problem anymore since most things make me gag (like dairy, sugar, breads, etc.); the problem is that I am so exhausted that I am going to be making myself push through that to exercise every day to speed up the weight loss. I continue to gain and lose the same two stinking pounds. The exercise should push me over the edge (in more ways than one).
He did validate my exhaustion. That is the number one symptom for those with my condition. Today, I plan to go straight home and crawl in the bed. That's where I really want to be anyway. I don't even care if I'm sleeping, I just want to lay there doing and thinking nothing.
For those who have wondered if I am still angry or get that way.....heck, yes! The stages of grief are not rigid. They come and go as they please, and sometimes hit you when you least expect it. I have had a few "why me?" moments lately. For the most part, I am able to shake those and remember, "why not me?". I'm no better than the next person. I just want to be a better person on the other side of all of this.
Hoping it won't be too long before the next post....take care!
For me, that means not really wanting to talk about what is going on or how I feel. Who really gives a crap? I feel horrible for not being able to perform adequately at school, and not really wanting to do anything meaningful once I get home. So basically, I'm just here.
I did take a trip to Medical College of South Carolina yesterday to meet with a doctor there. The hope is that he can find out what caused the disease and possibly slow it down. He took 14 vials of blood, so surely something will come out of that. I have to call him next week to get the results, but I don't have to see him again for 3 months.
I have to have an ultrasound every six months to make sure that cancer is not present. There is an increased risk, albeit small, that I could develop it. If caught early enough, I would immediately go into transplant mode. The biggie is that I have to lose some more weight to even be a candidate for a liver. The eating is not really the problem anymore since most things make me gag (like dairy, sugar, breads, etc.); the problem is that I am so exhausted that I am going to be making myself push through that to exercise every day to speed up the weight loss. I continue to gain and lose the same two stinking pounds. The exercise should push me over the edge (in more ways than one).
He did validate my exhaustion. That is the number one symptom for those with my condition. Today, I plan to go straight home and crawl in the bed. That's where I really want to be anyway. I don't even care if I'm sleeping, I just want to lay there doing and thinking nothing.
For those who have wondered if I am still angry or get that way.....heck, yes! The stages of grief are not rigid. They come and go as they please, and sometimes hit you when you least expect it. I have had a few "why me?" moments lately. For the most part, I am able to shake those and remember, "why not me?". I'm no better than the next person. I just want to be a better person on the other side of all of this.
Hoping it won't be too long before the next post....take care!
Wednesday, October 8, 2014
random thoughts
I cannot really go on with my posts about the grieving process because I honestly don't know where I am. Somewhere between several of the steps depending on the day! I have made it almost 3 weeks without missing a day of work, so that makes me very happy. Some days are better than others right now, but without the horrible stomach issues, I feel like a new woman.
Here's what is going on in our lives.......
a whole lotta nothing!
That's right folks, even our family has times that are boring and we are grateful. Now, what I call "boring" and you call boring might look like two different things. Like getting two phone calls on the same night at the same time from two different families that their loved ones might be dying. That just throws us into go mode, but we are use to it! Neither died, btw, thankfully!
Steve bought his Christmas present early....a gun. I haven't seen it much less touched it, and that is fine with me. I would never tell a person they couldn't have a gun (a law-abiding citizen anyway), but that doesn't mean I like 'em. I don't. However, I do understand the need to feel secure, and our place is crime-ridden. We haven't ever been hit, but that doesn't mean it can't happen. So, as long as I don't have to deal with it, it's fine. Still creeps me out, though.
Stevie is thriving at school. Loves her classes and what she is doing. I am so proud of her, my heart just bursts when she talks about how much she loves it.
Luke is Luke. We get no more information out of him than we did when he lived here.....haha! Boys: they are NOT forthcoming with tidbits to ease the mind of the momma. I think he really likes being at school.
Empty-nesting? It's GREAT! Everyone should try it. We eat what we want when we want and we go to bed without having to wait up for someone. Y'all said I would like it, and I have to admit that I do!
That's about it. I have an appointment in Charleston at MUSC on the 21st. I think I will hear more of the same, at least I hope nothing is worse. If they tell me something better than the news I keep hearing, we'll thank God and give Him all the glory. Either way, may our actions speak louder than our words (bc I know I've been complaining!) so that ALL will know God's got this!
Here's what is going on in our lives.......
a whole lotta nothing!
That's right folks, even our family has times that are boring and we are grateful. Now, what I call "boring" and you call boring might look like two different things. Like getting two phone calls on the same night at the same time from two different families that their loved ones might be dying. That just throws us into go mode, but we are use to it! Neither died, btw, thankfully!
Steve bought his Christmas present early....a gun. I haven't seen it much less touched it, and that is fine with me. I would never tell a person they couldn't have a gun (a law-abiding citizen anyway), but that doesn't mean I like 'em. I don't. However, I do understand the need to feel secure, and our place is crime-ridden. We haven't ever been hit, but that doesn't mean it can't happen. So, as long as I don't have to deal with it, it's fine. Still creeps me out, though.
Stevie is thriving at school. Loves her classes and what she is doing. I am so proud of her, my heart just bursts when she talks about how much she loves it.
Luke is Luke. We get no more information out of him than we did when he lived here.....haha! Boys: they are NOT forthcoming with tidbits to ease the mind of the momma. I think he really likes being at school.
Empty-nesting? It's GREAT! Everyone should try it. We eat what we want when we want and we go to bed without having to wait up for someone. Y'all said I would like it, and I have to admit that I do!
That's about it. I have an appointment in Charleston at MUSC on the 21st. I think I will hear more of the same, at least I hope nothing is worse. If they tell me something better than the news I keep hearing, we'll thank God and give Him all the glory. Either way, may our actions speak louder than our words (bc I know I've been complaining!) so that ALL will know God's got this!
Saturday, October 4, 2014
anger
When I was a good bit younger, I use to get mad about the stupidest things. I mean, seriously, "stupid angry" about insignificant problems that weren't really problems. I've gotten a lot more mellow as the years have gone by (being a PW will do that to you), and now reserve my anger for more important matters. That is to say that I rarely get angry. However, if I do, watch out!
That anger is a lot different than the anger experienced through the grief process. Being angry about illness makes me ill as a hornet. It's like my nerves are on the outside of my body and those who dare, touch them. I hate that feeling. I've had to do a lot of praying to get myself through that stage quickly, and xanax helps too!
I just couldn't stay parked there because it made me feel worse; and while I feel as though I am through it, I still feel it rear its ugly head from time to time. I have to stamp it down, and remember that there is a purpose for this. The bad thing about any of these stages of grief is that they can revisit at any time. This is one stage that I don't want to revisit or stay in.
I have to say that blogging again has cleared my head as I'd hoped it would. It helps me put things in perspective. While the writing is no where near my standards, I haven't seemed to care because it allows me to get it off my chest and move on. There are some things, unfortunately, that I can't even share here. Poor Steve has been getting an earful lately about those things I can't write about. I'd never want the superpower of reading minds. I sure don't want anyone to read mine! It is hard to not have the ability to share things with someone. I really don't want to burden Steve, and I truly hate talking on the phone. So, I'm glad the walls can't talk. I know Steve won't judge me, and that's important to me at this point.
That anger is a lot different than the anger experienced through the grief process. Being angry about illness makes me ill as a hornet. It's like my nerves are on the outside of my body and those who dare, touch them. I hate that feeling. I've had to do a lot of praying to get myself through that stage quickly, and xanax helps too!
I just couldn't stay parked there because it made me feel worse; and while I feel as though I am through it, I still feel it rear its ugly head from time to time. I have to stamp it down, and remember that there is a purpose for this. The bad thing about any of these stages of grief is that they can revisit at any time. This is one stage that I don't want to revisit or stay in.
I have to say that blogging again has cleared my head as I'd hoped it would. It helps me put things in perspective. While the writing is no where near my standards, I haven't seemed to care because it allows me to get it off my chest and move on. There are some things, unfortunately, that I can't even share here. Poor Steve has been getting an earful lately about those things I can't write about. I'd never want the superpower of reading minds. I sure don't want anyone to read mine! It is hard to not have the ability to share things with someone. I really don't want to burden Steve, and I truly hate talking on the phone. So, I'm glad the walls can't talk. I know Steve won't judge me, and that's important to me at this point.
Tuesday, September 30, 2014
denial
I am going to preface this post by saying that I am in no way comparing the grief of losing a loved one with the grief on an illness. I've been through the first, and it was horrible, this is different.
Denial
This is a happy place! I lived here for several months, and found that I liked it very much. I wasn't concerned about what was happening; honestly, I felt every appointment that I would be told that a horrible mistake had been made. That, indeed, I did not have anything wrong with me. I didn't cry about it or even think that much about it except when I was forced. Yes, denial is great.
There is one problem with denial, however, and that is that you eventually have to face reality. If I had my way, I'd still be skipping happily along. Reality sucks. The Reality was that the one week that I got to see Sam and Jack, I landed in the hospital the day after they arrived. I had a lot of plans for them, but they weren't able to happen. I don't really think they cared, and it probably helped Stevie and Luke not worry so much, so in the end it was ok.
People live in denial about all kinds of things. Death, disease, divorce, Heaven, Hell......you name it, and someone is probably denying its existence. I cannot live in that space anymore. I must face what is to come. I actually moved on after my hospital stay to stage 2, anger. That wasn't pretty! But, I will talk more about it later.
One thing I learned while in denial is that, I believe, it is God's way of shielding us from news we just can't bear. He is so good to us in that way. He holds our burdens when the weight of them simply drag us down. He holds them all of the time. We don't even have to pick them back up.
A friend of mine commented that I was strong. No, I'm not strong. I would easily curl into a ball, cry myself to sleep, and refuse to get out of bed any day of the week. I keep pressing only because I believe the promise in the Bible, "in my weakness, He is strong". Just like the children's song:
Jesus loves me, this I know
For the Bible tells me so.
Little ones to Him belong
For I am weak, and He is strong.
Yes, Jesus loves me
He loves us all, and holds tight when we are falling. The Bible also tells us that "God is the Father to the Fatherless". Ps. 68:5 What I wouldn't do for a hug from my dad, but arms of peace surrounding me by the Father is even sweeter.
Denial
This is a happy place! I lived here for several months, and found that I liked it very much. I wasn't concerned about what was happening; honestly, I felt every appointment that I would be told that a horrible mistake had been made. That, indeed, I did not have anything wrong with me. I didn't cry about it or even think that much about it except when I was forced. Yes, denial is great.
There is one problem with denial, however, and that is that you eventually have to face reality. If I had my way, I'd still be skipping happily along. Reality sucks. The Reality was that the one week that I got to see Sam and Jack, I landed in the hospital the day after they arrived. I had a lot of plans for them, but they weren't able to happen. I don't really think they cared, and it probably helped Stevie and Luke not worry so much, so in the end it was ok.
People live in denial about all kinds of things. Death, disease, divorce, Heaven, Hell......you name it, and someone is probably denying its existence. I cannot live in that space anymore. I must face what is to come. I actually moved on after my hospital stay to stage 2, anger. That wasn't pretty! But, I will talk more about it later.
One thing I learned while in denial is that, I believe, it is God's way of shielding us from news we just can't bear. He is so good to us in that way. He holds our burdens when the weight of them simply drag us down. He holds them all of the time. We don't even have to pick them back up.
A friend of mine commented that I was strong. No, I'm not strong. I would easily curl into a ball, cry myself to sleep, and refuse to get out of bed any day of the week. I keep pressing only because I believe the promise in the Bible, "in my weakness, He is strong". Just like the children's song:
Jesus loves me, this I know
For the Bible tells me so.
Little ones to Him belong
For I am weak, and He is strong.
Yes, Jesus loves me
He loves us all, and holds tight when we are falling. The Bible also tells us that "God is the Father to the Fatherless". Ps. 68:5 What I wouldn't do for a hug from my dad, but arms of peace surrounding me by the Father is even sweeter.
2 Corinthians 12:9 NIV
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
Saturday, September 27, 2014
part 2
In late May, my GI doctor ordered an endoscopy to check for a condition called variscies. This is when the pressure from somewhere in the liver builds up and causes blood vessels to burst. They measure this from 0-4. My doc thought I would be close to a 4 considering the condition of my liver, but I was a 0. No bleeding. Happy day for me. At that point, he scheduled the dreaded liver biopsy which I had the last week of June. I had to wait FOREVER to get the results!
When I finally returned to my doc, he explained the results in terms of a war. There is a war going on in my liver. It is at a 2....the fighting is not too bad, but the collateral damage is very bad at a 4. At this point he "guessed" that I have autoimmune hepatitis. That is still unclear. He also referred me to MUSC transplant center. (and I'm going Oct. 21)
A week of so later, my stomach started hurting. I couldn't eat and the pain was radiating to my back. I tried to just get over it, but after 5 days of excruciating pain, I finally got up early and told Steve to take me to the ER. There, I learned that I had pancreatitis. Disgusting......I truly wouldn't wish that on anyone. I was in the hospital about 4 days, and my stomach really hasn't been the same since.
I did have about 2 weeks between the hospital and starting the school year that I felt good. I had energy, and was able to do some things with Stevie and Luke before they left. The first day of school, however, I got sick. Since then, I have suffered with all things associated with a stomach bug. I have been to the doc several time to no avail, and missed about 7 days of work already because of it. It's very depressing because I never know when it will hit....like today. I had a great week at school, and felt good all week. Today, bam-yow!
I want to give the best of me to my family, not the leftovers. With that being said, I have to have insurance so I go to work. Not that I don't love my job, I do, but sometimes I resent the position I am in.
I keep reminding myself that God knows my needs, and when the time is right, He will meet them. For know, I pray that He gives me strength and energy to work. Things are not simple right now, but seriously, we are the Leighs.....have things ever been simple for us? NO!
So, in a nutshell, that is where we stand today. Next up? The 5 stages of grief.
When I finally returned to my doc, he explained the results in terms of a war. There is a war going on in my liver. It is at a 2....the fighting is not too bad, but the collateral damage is very bad at a 4. At this point he "guessed" that I have autoimmune hepatitis. That is still unclear. He also referred me to MUSC transplant center. (and I'm going Oct. 21)
A week of so later, my stomach started hurting. I couldn't eat and the pain was radiating to my back. I tried to just get over it, but after 5 days of excruciating pain, I finally got up early and told Steve to take me to the ER. There, I learned that I had pancreatitis. Disgusting......I truly wouldn't wish that on anyone. I was in the hospital about 4 days, and my stomach really hasn't been the same since.
I did have about 2 weeks between the hospital and starting the school year that I felt good. I had energy, and was able to do some things with Stevie and Luke before they left. The first day of school, however, I got sick. Since then, I have suffered with all things associated with a stomach bug. I have been to the doc several time to no avail, and missed about 7 days of work already because of it. It's very depressing because I never know when it will hit....like today. I had a great week at school, and felt good all week. Today, bam-yow!
I want to give the best of me to my family, not the leftovers. With that being said, I have to have insurance so I go to work. Not that I don't love my job, I do, but sometimes I resent the position I am in.
I keep reminding myself that God knows my needs, and when the time is right, He will meet them. For know, I pray that He gives me strength and energy to work. Things are not simple right now, but seriously, we are the Leighs.....have things ever been simple for us? NO!
So, in a nutshell, that is where we stand today. Next up? The 5 stages of grief.
Monday, September 22, 2014
update
I have been pretty sick this past week which is why I haven't posted part 2 yet. I do believe, however that we have narrowed the problem down. It is believed I may have an ulcer. The treatment plan seems to be working, so I think that has been what is making me sick. It got to the point of ridiculous last week when, after being sick since the first day of school, I became violently ill last Tuesday morning. Being hard-headed, I went on to work only to get sick the minute I walked in the door. From there, I spent the rest of the morning at the hospital and doctor's office until I finally made it home with orders to stay put the rest of the week. That's exactly what I did....guilt and all. I hate missing work, but oh well. I am still not 100%, but I went back today. By 11:30, I was ready to go, but I suffered through the afternoon and made it the whole day. It was my choice to go back...the doctor had said that I may need to stay home this week as well, but I'm a little paranoid. There's strep and other crud going around. I'm using Lysol wipes to try to keep my surfaces germ-free, but I can only do so much! So, say a big prayer that the crud doesn't find me.
On another note, Steve and I have a decision that needs to be made. We, as always, want to be within God's will, but this is not something to take lightly. I cannot elaborate, but I do ask that you petition the Lord with us as He works His plan.
On another note, Steve and I have a decision that needs to be made. We, as always, want to be within God's will, but this is not something to take lightly. I cannot elaborate, but I do ask that you petition the Lord with us as He works His plan.
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