So Jon went to see his doctor a few weeks ago - like the first week of January I think it was. He had a lab slip from his last appointment with the surgeon in November - he was to get his B12 and D levels rechecked since they gave him ONE B12 booster shot at that appointment. They said to get the labs done in January. So with the upcoming visit to the family doc, I made sure he got rechecked before then.
Fast forward to the visit. Jon pleads with the doctor to do something because his pain is getting worse and unbearable, and he can't take it. The doctor silently stares at his computer and clicks all around at who knows what. He softly says I see you had labs done earlier this week. I speak up and say yes - what were the results? He says "The D results aren't in for some reason, and your B12 is borderline, but not that bad. We do still need to get it up." I reply WHAT WAS THE NUMBER? He says "It does need to come up some, but we have to give it time". I repeat WHAT WAS THE NUMBER? He finally says 179. 179? Seriously? It was 178 three months ago. He has been taking obscene amounts of B12 (he takes 7500mcg/day) and he had the booster shot in November that everyone said would help tremendously. So besides the fact that it's obviously NOT coming up at a reasonable pace, 179 is NOT acceptable. His neurologist at Hershey (who discovered the problem) stated that his levels should be around 1,000. So Jon spoke up (which I was proud of) and said no, Hershey says it needs to be 1,000. Doctor simply stuttered and moved on to the next topic. He is thinking out loud and says "Have you ever tried Neurontin for your pain?" To which Jon & I both quickly replied YES! Mind you he was on around 3,200 mg every day for oh, 5 years?!? But obviously he didn't remember that or bother looking (and yes...it's on his chart med list). He then says "Have you tried XYZ (the name is slipping my mind at the moment..)?" To which we replied YES. He can't take that because it tears up his stomach. Again - on the chart med list). So he says well, let's try Lyrica. He had prescribed it once before, but we were in the midst of a Medicare and secondary insurance issue and it wasn't approved. So he said he would try again to have it approved. Fast forward a little - it was approved for 3 years at 75mg twice a day. Praise God! He also then says, well maybe we can increase your Imipramine, but maybe I should check your bloodwork first. So that's where he left things. They gave him a B12 shot in the office and said they will give him one monthly until we can get his levels up where they need to be. We left and got the labs done.
Last week we got a call that his Imipramine levels were borderline toxic. Doctor states he will "have to keep a better eye on that" and that he should decrease his dose from 5 to 3 pills a day. Gee, glad he complained he was having more pain that prompted you to check his levels....ugh. So, here we are and he is trying a new medication (the Lyrica) and decreased his Imipramine. However, he put a call in to the doctor yesterday because his pain is getting unbearable. It seems his meds are just losing their effectiveness. The doctor increased the Lyrica to double the dose, hoping it will get built up in his system faster. So we wait.
He's falling more, his headaches are worse, his memory is worse. We had a couple over to watch football on Sunday, and had a nice time. Yesterday he says to me "Hon, Nevaeh said R & S stayed all day yesterday, is that true?" I said yeah, you don't remember? He said not really. I remember them being here, but not really details. How late did they stay? I honestly find it so sad and heartbreaking. I know it's just a very, VERY small taste of what families who have loved ones with Alzheimer's go through, and it's sad.
So yesterday I put an emergency call in to MOM. I said mom, Jon's going downhill -- I'm gonna need more help. She already watches Riley every other Thursday. She said she could take him today overnight (she just picked him up) and next week she'll take him Tues/Wed/Thurs, so that's a good start. Jon is in bed, and hopefully won't *need* to get out of bed until Thursday morning (this is mom's off week for Riley). I'm settling in at my desk for a few hours of typing until the girls get home from school, then it's homework and dinner. Jon's mom comes tonight to read to them and put them in bed...I may just take a break from work and go to the couponing group @ church tonight...but I feel guilty. I should focus on getting stuff done here - there's so much! Hopefully this weekend I can get some baking/cooking done to have some meals in the freezer. Unfortnately, I know the signs, and I can see Jon is going down. I don't know when, but probably one of these mornings he just won't be able to wake up and he'll be in a *coma* for a while until his body regains some strength. So I need to prepare and pace myself. We have a gift card for the movies and we have a babysitter for Friday night - we were planning on a date night, so I'm praying maybe he can get enough rest these next 3 days that we can do that. Our relationship is so strained and we need that time together. Sure, we're with each other 24/7 since I work at home, but it's not meaningful time because it's kids, cleaning, laundry, bills, etc. and hardly ever just enriching time together. We're trying to make it a point more to do dates...but this is what seems to happen. It's hard to plan! So that's the life around here.
Just keep those prayers coming, we appreciate them!!
Tuesday, January 24, 2012
Wednesday, January 11, 2012
Testing - Life, not Medical
I have a Joyce Meyer daily devotional plan on my Bible on my iPhone. It even reminds me every day to read it!
I've been lacking. Some days I just ignore it. I know I shouldn't. I know I need to draw closer to God, not ignore Him. Regardless of my feelings, I do find some comfort in knowing I am a child of God and that He does have an ultimate plan for our lives. I cannot imagine going through this without my God by my side.
But I'm still human. I still feel the emotions that come with testing. I can still feel lonely. I can still be sad. And I am.
But today when I opened up my devotional, it was just enough to help me through ... just today. Just one day at a time. That's all I'm striving for at this point.
Here is what it said...coincidence? I think not. My God is not a God of coincidence.
Life is filled with challenges that test our determination and our faith in God. Whether we're faced with the impending threat of evil or with everyday hassles, the quality of our character is sure to be tested on a regular basis.
It would be a great mistake to overlook the fact that God tests our hearts, our emotions, and our minds. What does it mean to test something? It means to put pressure on it to see if it will do what it says it will do. Will it hold up under stress? Can it perform at the level its maker says it can? Is it genuine when measured against a true standard of quality?
God does the same with us.
Are you being tested today? The key is to keep trusting God, even if you don't understand. There is no such thing as trusting God without unanswered questions, but when you push ahead, despite your doubts, HE will build you up and make you strong.
I'm not perfect, and I don't claim to be on a spiritual high, happy and joyous that God is testing me. BUT - I'm going to try just a little harder to face each day with "God, what are you trying to teach me?" and use whatever that is for His glory.
Tuesday, January 10, 2012
REALITY
Warning: I state my true feelings in this post. I don't mean to offend anyone, but I don't feel anything I have said is unpleasing to God or that I have any reason to be ashamed. Read at your own risk.
Things have been difficult around here.
For the last few weeks I found myself just saying “get through the holidays, it’s just the stress of holidays”. Well, it’s not. It’s just life.
We had a wonderful Christmas. I worked a lot of long hours and long days the last few months because Jon & I really wanted the kids to have a special Christmas. We know material things won’t make them happy, but there is so much chaos around here all the time and so much stress, we wanted to be able to give them one of the things all three have been wanting - iPod touches.
And so we spread out our Christmas shopping over the last few months (we started Christmas shopping in August!), and we were truly blessed as far as gift giving this year.
None of it matters. I would give it all away to have peace and health in our home.
I know that life is filled with peaks and valleys. I know that there have been times I’ve had
super happy posts and I’ve dealt with life in a positive way. Today is not one of those days. This month is not one of those months. I personally am in a very low valley. I am sad. I feel hurt. I feel stressed. I feel like a failure in so many ways. I feel burnt out.
There are simple things that are getting to me, maybe even call them selfish things, and then there are big things. One of the simple things is I find it extremely frustrating that I have to drive everywhere and do everything. I can’t ask Jon to run to the store for a gallon of milk. I can’t have Jon run and get pizza for dinner. I can’t ask Jon to take the kids to the park and have quiet time here at the house. I can’t have Jon take Natalie to gymnastics. I have to take all the kids to their appointments. I have to take Jon to his appointments, lab work, pick up his prescriptions (do you realize I’m at the pharmacy at least 5x a month?) I have to drive everywhere, all. the. time. I hate it. I hate driving -- well, except when I’m by myself (rarely), because that means quiet time in the car. It’s not a big deal - but think about your life. Think about everything your spouse drives to/for. I know I never thought about it before I was in this situation. It’s a pretty big deal ... to me. I have the responsibility of doing things around the house - things that may seem so simple, but they’re not. I have two heavy bathroom mirrors that have been sitting in the box in my master bath for months.....because I can’t hang them myself (or at least not get them up there straight!! Haha) ...nor do I honestly know how to hang something so heavy in a proper way. Call
me ignorant -- it’s the truth. In a few months it will be my responsibility to get the supplies to put a shed in the back yard - something about stones and wood to make a support?? I don’t know...but I’ll have to figure it out...and get it done. This house needs painted inside. Terribly.
I have some of the paint - but no time to do it where I won’t end up with a 5 gal bucket of paint on my floors. It’s never ending the things that normally would be no brainers in a house - but I have to figure out how to take care of them myself - and do it myself usually.
I’m frustrated with Jon’s health. It’s at a standstill with doctors, yet he’s actually been feeling worse. As of right now they just started with monthly B-12 injections. That’s it. My mom helped me find and I purchased some sublingual Vit D & B-12 pills for him to take (they dissolve in his mouth) to see if it helps with his absorption, since it’s obvious that’s an issue. He sees a new doctor, an internist, at Hershey on February 20th. I had a list a mile long of things to do and phone calls to make yesterday, and somehow didn’t have “get a new family doctor” on that list. So that will be on my call list for Friday. Jon is incapable mentally and emotionally of handling this task, and it can’t be put off any longer. I just have to do it. Imagine though, having gone to more doctors than you can remember or even keep count of, and every single one saying the
same thing -- they can’t help you. They don’t know why you have pain. So now imagine trying just one more. Yeah, it’s not going to be easy.
I’m frustrated with our children. That’s not to be mistaken with saying I don’t love them. I DO. Our children are very, VERY high energy and very intelligent and need a lot of stimulation, both physically and emotionally. I’m tapped out. Jon’s been tapped out. They come home from school, and it’s just instant mayhem. They’re not bad. Really, they’re not. They act the way they do because of the life they live. It’s not normal. We send them off to school M-F. Saturdays Natalie has gymnastics in the morning for an hour (at which time I usually have the question of when am I going to put Nevaeh in Karate -and Riley too) and I start having heart palpitations because my heart aches for her. I want to. I need to. But I just cannot imagine adding something
else to my schedule. Bedtime is ridiculous. The girls have gotten slightly better, but Riley -- oh wow. Just last night I noticed on my phone at 10:00 I had a random text from Natalie’s iPod - I knew immediately he had gone into her room and taken it off her dock and done it. So I go upstairs and find him in Natalie’s bed, under her covers, she’s sawing logs, and he’s playing her iPod. This is 2.5 hours after he was put in bed originally. Jon & I tag teamed putting him back in his room and dealing with the screaming until he finally went to sleep. Natalie & Nevaeh have each or both been waking up in the middle of the night with nightmares or saying they can’t go back to sleep. I don’t know how to help them. Nevaeh has constant pain, constant headaches. I have had her to the doctor and I’m just dreading taking her back again, but I know I need to.
I’m frustrated with relationships. I’m being real here people - and I speak for myself and Jonathan - we feel abandoned. We attend a church of roughly 2,000 people, and a LOT of those people know who we are simply because my father-in-law is one of the pastors on staff. Since Jon started deteriorating in May - TWO people have made a point to actually come to the house to visit him. TWO. That’s almost 9 months, and TWO visitors. One person has made it a point
to call or text and even come and pick Jon up and take him to breakfast for a few hours. Yes, you have to load his wheelchair in your trunk and you have to come get him, but it’s not THAT
bad. The other has come to visit and also helped tremendously in the beginning with watching kids, helping make sure we could get to appointments and such. Yes, for the first few months we had meals brought to us, and don’t get me wrong, that is such a blessing. Jon used to be our cook (and he still is for the most part), but it’s hard for him to stand and cook a meal each night. I
am not in any way trying to sound ungrateful. But I would like to think that if I had a friend who was going through what we’re going through - I would reach out to them. Call them, e-mail them, send a note of encouragement, offer to help in whatever capacity I could, and VISIT. I mean he’s basically a shut-in. Yes, I drag him to the store with me and he goes to lots of doctor appointments, but he doesn’t get out to socialize. He can’t even attend church at this point
because of his migraines and the noise level is too much for him.
From my perspective, I feel like there are a lot of people who say they are praying for us -- and they are, and I am thankful for that...but I feel like it ends there. Over the last 9 months I have had 2 women who have faithfully called me or e-mailed or texted and have brought meals and gone out for a bite to eat . But for the most part, I don’t have much of a social life either outside this house. Thankfully I have a friend thousands of miles away (not really that far, but it feels like it!) in Georgia who puts up with my incessant rants via text -- maybe someday I’ll meet her!!
Some of you may be reading this thinking WOW. She is really ungrateful and that’s really rude. I’m sorry you feel that way. I know it’s hard to comprehend and understand what Jon & I are going through. I know it’s sad and depressing to talk about our life. But when someone has cancer or breaks a bone or someone dies - everyone jumps to shower that family with help and support, no? Jon’s “cancer” is long term. We’ve been dealing with it for almost 8 years and it may be for the rest of our lives. It’s just as hard as the first day - no, make that harder, because we
have 3 kids now. But it’s easy for people to forget. Easy for people to just move on and just say all I can do is pray. Where is the love in that? If your child had long term health care needs, would you grow “accustomed” to them and be less concerned about their well-being, emotionally and physically? No. You would be there every day. Now, I’m not saying that our life is your number one priority. Goodness I know people have lives. I know people have children. I know people have jobs, extracurricular activities, and other friends. I also know other people are dealing with hard times and heartache too. So I’m not saying HEY LOOK AT ME, I’M SPECIAL. I’m
not. We’re not. But we do need friends and genuine love and support, and we feel very abandoned.
Saying all that, I know we need to trust God, and we DO - but He created us to love one another.
He created us for each other. I wouldn’t wish my life on my worst enemy, and I can imagine being on the other side of the picture and it being difficult to know how to love and to express
that love. All I ask is that you try. If not for/to me - to my kids. To Jonathan. We’re human, and humans crave love. It won’t take away our pain, it won’t take away our struggles, but at the end of the day it will make us SMILE and feel like we really matter to someone and that someone actually knows we’re still here and loves us.
So now that I’m done my pity party, I’ve got to get back to work, which is a whole other post!
Again, I don’t mean this post to be offensive to anyone or to hurt anyone’s feelings. But I don’t
feel as a Christian I should have to pretend or hide the way I feel....and maybe some of you don’t even realize how much we’re hurting or how much we need this kind of support. Now you do. So please, if not for me, for Jon - don’t let him go through this alone - and for the kids, help us make them realize how special they are and how loved they are, regardless of the stress at home.
You never know how something so small might make our day THAT much brighter.
Things have been difficult around here.
For the last few weeks I found myself just saying “get through the holidays, it’s just the stress of holidays”. Well, it’s not. It’s just life.
We had a wonderful Christmas. I worked a lot of long hours and long days the last few months because Jon & I really wanted the kids to have a special Christmas. We know material things won’t make them happy, but there is so much chaos around here all the time and so much stress, we wanted to be able to give them one of the things all three have been wanting - iPod touches.
And so we spread out our Christmas shopping over the last few months (we started Christmas shopping in August!), and we were truly blessed as far as gift giving this year.
None of it matters. I would give it all away to have peace and health in our home.
I know that life is filled with peaks and valleys. I know that there have been times I’ve had
super happy posts and I’ve dealt with life in a positive way. Today is not one of those days. This month is not one of those months. I personally am in a very low valley. I am sad. I feel hurt. I feel stressed. I feel like a failure in so many ways. I feel burnt out.
There are simple things that are getting to me, maybe even call them selfish things, and then there are big things. One of the simple things is I find it extremely frustrating that I have to drive everywhere and do everything. I can’t ask Jon to run to the store for a gallon of milk. I can’t have Jon run and get pizza for dinner. I can’t ask Jon to take the kids to the park and have quiet time here at the house. I can’t have Jon take Natalie to gymnastics. I have to take all the kids to their appointments. I have to take Jon to his appointments, lab work, pick up his prescriptions (do you realize I’m at the pharmacy at least 5x a month?) I have to drive everywhere, all. the. time. I hate it. I hate driving -- well, except when I’m by myself (rarely), because that means quiet time in the car. It’s not a big deal - but think about your life. Think about everything your spouse drives to/for. I know I never thought about it before I was in this situation. It’s a pretty big deal ... to me. I have the responsibility of doing things around the house - things that may seem so simple, but they’re not. I have two heavy bathroom mirrors that have been sitting in the box in my master bath for months.....because I can’t hang them myself (or at least not get them up there straight!! Haha) ...nor do I honestly know how to hang something so heavy in a proper way. Call
me ignorant -- it’s the truth. In a few months it will be my responsibility to get the supplies to put a shed in the back yard - something about stones and wood to make a support?? I don’t know...but I’ll have to figure it out...and get it done. This house needs painted inside. Terribly.
I have some of the paint - but no time to do it where I won’t end up with a 5 gal bucket of paint on my floors. It’s never ending the things that normally would be no brainers in a house - but I have to figure out how to take care of them myself - and do it myself usually.
I’m frustrated with Jon’s health. It’s at a standstill with doctors, yet he’s actually been feeling worse. As of right now they just started with monthly B-12 injections. That’s it. My mom helped me find and I purchased some sublingual Vit D & B-12 pills for him to take (they dissolve in his mouth) to see if it helps with his absorption, since it’s obvious that’s an issue. He sees a new doctor, an internist, at Hershey on February 20th. I had a list a mile long of things to do and phone calls to make yesterday, and somehow didn’t have “get a new family doctor” on that list. So that will be on my call list for Friday. Jon is incapable mentally and emotionally of handling this task, and it can’t be put off any longer. I just have to do it. Imagine though, having gone to more doctors than you can remember or even keep count of, and every single one saying the
same thing -- they can’t help you. They don’t know why you have pain. So now imagine trying just one more. Yeah, it’s not going to be easy.
I’m frustrated with our children. That’s not to be mistaken with saying I don’t love them. I DO. Our children are very, VERY high energy and very intelligent and need a lot of stimulation, both physically and emotionally. I’m tapped out. Jon’s been tapped out. They come home from school, and it’s just instant mayhem. They’re not bad. Really, they’re not. They act the way they do because of the life they live. It’s not normal. We send them off to school M-F. Saturdays Natalie has gymnastics in the morning for an hour (at which time I usually have the question of when am I going to put Nevaeh in Karate -and Riley too) and I start having heart palpitations because my heart aches for her. I want to. I need to. But I just cannot imagine adding something
else to my schedule. Bedtime is ridiculous. The girls have gotten slightly better, but Riley -- oh wow. Just last night I noticed on my phone at 10:00 I had a random text from Natalie’s iPod - I knew immediately he had gone into her room and taken it off her dock and done it. So I go upstairs and find him in Natalie’s bed, under her covers, she’s sawing logs, and he’s playing her iPod. This is 2.5 hours after he was put in bed originally. Jon & I tag teamed putting him back in his room and dealing with the screaming until he finally went to sleep. Natalie & Nevaeh have each or both been waking up in the middle of the night with nightmares or saying they can’t go back to sleep. I don’t know how to help them. Nevaeh has constant pain, constant headaches. I have had her to the doctor and I’m just dreading taking her back again, but I know I need to.
I’m frustrated with relationships. I’m being real here people - and I speak for myself and Jonathan - we feel abandoned. We attend a church of roughly 2,000 people, and a LOT of those people know who we are simply because my father-in-law is one of the pastors on staff. Since Jon started deteriorating in May - TWO people have made a point to actually come to the house to visit him. TWO. That’s almost 9 months, and TWO visitors. One person has made it a point
to call or text and even come and pick Jon up and take him to breakfast for a few hours. Yes, you have to load his wheelchair in your trunk and you have to come get him, but it’s not THAT
bad. The other has come to visit and also helped tremendously in the beginning with watching kids, helping make sure we could get to appointments and such. Yes, for the first few months we had meals brought to us, and don’t get me wrong, that is such a blessing. Jon used to be our cook (and he still is for the most part), but it’s hard for him to stand and cook a meal each night. I
am not in any way trying to sound ungrateful. But I would like to think that if I had a friend who was going through what we’re going through - I would reach out to them. Call them, e-mail them, send a note of encouragement, offer to help in whatever capacity I could, and VISIT. I mean he’s basically a shut-in. Yes, I drag him to the store with me and he goes to lots of doctor appointments, but he doesn’t get out to socialize. He can’t even attend church at this point
because of his migraines and the noise level is too much for him.
From my perspective, I feel like there are a lot of people who say they are praying for us -- and they are, and I am thankful for that...but I feel like it ends there. Over the last 9 months I have had 2 women who have faithfully called me or e-mailed or texted and have brought meals and gone out for a bite to eat . But for the most part, I don’t have much of a social life either outside this house. Thankfully I have a friend thousands of miles away (not really that far, but it feels like it!) in Georgia who puts up with my incessant rants via text -- maybe someday I’ll meet her!!
Some of you may be reading this thinking WOW. She is really ungrateful and that’s really rude. I’m sorry you feel that way. I know it’s hard to comprehend and understand what Jon & I are going through. I know it’s sad and depressing to talk about our life. But when someone has cancer or breaks a bone or someone dies - everyone jumps to shower that family with help and support, no? Jon’s “cancer” is long term. We’ve been dealing with it for almost 8 years and it may be for the rest of our lives. It’s just as hard as the first day - no, make that harder, because we
have 3 kids now. But it’s easy for people to forget. Easy for people to just move on and just say all I can do is pray. Where is the love in that? If your child had long term health care needs, would you grow “accustomed” to them and be less concerned about their well-being, emotionally and physically? No. You would be there every day. Now, I’m not saying that our life is your number one priority. Goodness I know people have lives. I know people have children. I know people have jobs, extracurricular activities, and other friends. I also know other people are dealing with hard times and heartache too. So I’m not saying HEY LOOK AT ME, I’M SPECIAL. I’m
not. We’re not. But we do need friends and genuine love and support, and we feel very abandoned.
Saying all that, I know we need to trust God, and we DO - but He created us to love one another.
He created us for each other. I wouldn’t wish my life on my worst enemy, and I can imagine being on the other side of the picture and it being difficult to know how to love and to express
that love. All I ask is that you try. If not for/to me - to my kids. To Jonathan. We’re human, and humans crave love. It won’t take away our pain, it won’t take away our struggles, but at the end of the day it will make us SMILE and feel like we really matter to someone and that someone actually knows we’re still here and loves us.
So now that I’m done my pity party, I’ve got to get back to work, which is a whole other post!
Again, I don’t mean this post to be offensive to anyone or to hurt anyone’s feelings. But I don’t
feel as a Christian I should have to pretend or hide the way I feel....and maybe some of you don’t even realize how much we’re hurting or how much we need this kind of support. Now you do. So please, if not for me, for Jon - don’t let him go through this alone - and for the kids, help us make them realize how special they are and how loved they are, regardless of the stress at home.
You never know how something so small might make our day THAT much brighter.
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