The other day I was on Facebook and clicked on a blog post someone else linked to. I don't remember the exact content, but the blog was a parenting one, with lots of posts about breastfeeding. I ended up clicking around and reading a lot. And I had a hard time.
Because according to Our Plan, now is the time we were going to start trying for baby number two. I was (am!) a stay at home mom, who plans to homeschool. I breastfed Lizzie until she was 19 months old and stopped because I needed to start a medication for my fibromyalgia symptoms. I had planned to let her decide when to wean. I kind of have a feeling we'd still be at it if my diseases hadn't interfered.
I took Lizzie to the library every week for storytime, and joined a MeetUp group for SAHMs to get their kids together to play. I wanted to enroll her in community ed classes and take her to swimming lessons. We would go to the park and go for walks and bike rides. I made my own babyfood. I had planned to do everything I could to enrich my daughter's life. And there was going to be probably 3 kids eventually.
I mourn the kind of mom I was and who I wanted to be. I mourn the family we wanted. It plays through my mind like a home video with bright, cheery scenes full of happy children. My reality seems dull and listless in comparison. I feel as if I've deprived Lizzie of a great many things, including siblings.
Instead, she gets a couch momma, who not only doesn't have the energy to play with her, but can't even go into the sun. Her days are full of TV, her toys and her mom instead of children to play with.
I try to remember all that I DO give her. She gets a mom who is always there and has taught her how to be caring and loving. Even though we can't go go go like I had always envisioned, she does know that she's very loved, and that counts for probably more than I give it credit for.
Showing posts with label emotional. Show all posts
Showing posts with label emotional. Show all posts
Saturday, October 1, 2011
Monday, August 8, 2011
It is real.
I am coming up on my third appt with the LLMD and have reached the time of the month when the borrelia hit the end of their regular life cycle and a whole bunch die at once. I am starting my third herx today and it brings a bunch of things.
As my body tingles and feels too hot, yet cold, and completely exhausted, too exhausted to even play my favorite Facebook game, Gardens of Time (which is a simple look for objects in a picture game), a myriad of feelings come to me. I get a little zing of YAY!!!! Those nasty buggers are dying!! WOOO HOOO!!!! DIE you bastards, DIE!!!!! And then I feel sad that feeling crappy is reason to celebrate. And its scary.
This month is a little different than the other times I've had the monthly herx (the borrelia's natural life cycle is about 30 days long and its very typical to have a large die off that happens every 28-30 days). I ran out of zithromax on Friday and haven't gotten the script refilled yet. I decided not to push for it because I thought a little break would be nice. It was! I felt comparably great yesterday! More energy, less stomach issues, I was more alert and wanting to do things than I have been since I started treatment.
So, today I get the fevery symptoms, right on schedule, even though my antibiotic load is less than usual. This can only mean one thing. I DO, unmistakably have lyme disease. There is no question in my mind. It is very real, I can't really deny it anymore. And it scares the bejeezus out of me. I remember learning about it in elementary school and being very scared about such a terrible disease that comes from a teeny tiny tick. That if you miss early diagnosis, it turns into a nasty chronic disease that causes damage so even if the infection is treated all the symptoms don't go away. And that it can affect your heart and brain. Very big and bad things to a young kid. Its big and bad to adults too. Understanding the disease more and seeing how much it has affected me doesn't make it less scary - its worse now.
I can't deny that I have at least a good year and a half of this kind of treatment. A year and a half at minimum of feeling this rotten and tired and unable to eat (which does have its benefits, I have to admit - at least when you're wanting to lose weight). I worry about when insurance will stop covering my meds and monthly blood tests to be sure my organs are handling treatment ok, and I worry about how we''ll pay for it all. I worry about my daughter having it too, because I was infected before Button was born, and lyme can be transmitted from mother to unborn child. That possibility makes me sick in and of itself.
But, I ahve to stay on the bright side, need to take life day by day instead of looking at the big picture. Sometimes I even need to just stay in the very moment. Remind myself that every day is different and that it is GOOD that i'm treating my lyme. That I will improve. If I look at it from the dark side, I won't be able to make it. Nobody could. So I'm trying to focus on the good things to help me along.
So, good things for today are:
the bugs are dying!
Lizzie was really really good this morning when I wasn't able to wake up
my husband is always just a holler down the stairs away
I have loving pets that keep me company while I rest
Lizzie still takes a big long nap in the afternoon so I can rest too
I have family, friends and neighbors who are very caring, loving and helpful
And I could go on and on, but this post is long enough already.
As my body tingles and feels too hot, yet cold, and completely exhausted, too exhausted to even play my favorite Facebook game, Gardens of Time (which is a simple look for objects in a picture game), a myriad of feelings come to me. I get a little zing of YAY!!!! Those nasty buggers are dying!! WOOO HOOO!!!! DIE you bastards, DIE!!!!! And then I feel sad that feeling crappy is reason to celebrate. And its scary.
This month is a little different than the other times I've had the monthly herx (the borrelia's natural life cycle is about 30 days long and its very typical to have a large die off that happens every 28-30 days). I ran out of zithromax on Friday and haven't gotten the script refilled yet. I decided not to push for it because I thought a little break would be nice. It was! I felt comparably great yesterday! More energy, less stomach issues, I was more alert and wanting to do things than I have been since I started treatment.
So, today I get the fevery symptoms, right on schedule, even though my antibiotic load is less than usual. This can only mean one thing. I DO, unmistakably have lyme disease. There is no question in my mind. It is very real, I can't really deny it anymore. And it scares the bejeezus out of me. I remember learning about it in elementary school and being very scared about such a terrible disease that comes from a teeny tiny tick. That if you miss early diagnosis, it turns into a nasty chronic disease that causes damage so even if the infection is treated all the symptoms don't go away. And that it can affect your heart and brain. Very big and bad things to a young kid. Its big and bad to adults too. Understanding the disease more and seeing how much it has affected me doesn't make it less scary - its worse now.
I can't deny that I have at least a good year and a half of this kind of treatment. A year and a half at minimum of feeling this rotten and tired and unable to eat (which does have its benefits, I have to admit - at least when you're wanting to lose weight). I worry about when insurance will stop covering my meds and monthly blood tests to be sure my organs are handling treatment ok, and I worry about how we''ll pay for it all. I worry about my daughter having it too, because I was infected before Button was born, and lyme can be transmitted from mother to unborn child. That possibility makes me sick in and of itself.
But, I ahve to stay on the bright side, need to take life day by day instead of looking at the big picture. Sometimes I even need to just stay in the very moment. Remind myself that every day is different and that it is GOOD that i'm treating my lyme. That I will improve. If I look at it from the dark side, I won't be able to make it. Nobody could. So I'm trying to focus on the good things to help me along.
So, good things for today are:
the bugs are dying!
Lizzie was really really good this morning when I wasn't able to wake up
my husband is always just a holler down the stairs away
I have loving pets that keep me company while I rest
Lizzie still takes a big long nap in the afternoon so I can rest too
I have family, friends and neighbors who are very caring, loving and helpful
And I could go on and on, but this post is long enough already.
Monday, July 25, 2011
I wanna hold your hand
I wrote this up on the 18th, but sat on it for awhile cuz I had already posted a bunch at that point. Today seems like a good day to publish it, because again, I'm not feeling well enough to be out of bed.
Spending so much time in bed is getting boring and lonely. I've been feeling rather isolated by my inability to function in the world. I haven't been out of the house since Friday. As I lie in bed trying to rest, I can't help but think one thing.
"I just want to hold someone's hand."
I don't want to have to talk, or do anything. I just want quiet, comforting companionship.
The dogs have been by my side nearly the whole time I'm in bed. It helps to reach a hand or foot out to touch them. But its not the same as a human.
As I long for this, my mind wanders back to when my grandpa was really sick in the hospital. I was only 8, and he was paralyzed on half of his body and couldn't talk. But my mom told me to go ahead and go up to him and hold his hand. That he would would like it. I've held other people's hands when they were sick and dying.
Being in this lonely place lets me see the gift I gave them. I didn't expect them to do anything, and I didn't do anything but let them know I was there with them, that they weren't alone.
*******
As I set the computer aside for a cry just now, I can feel that I'm not alone either. Someone is holding my right hand, and someone else has their arm around my shoulder. I wouldn't be surprised if its both of my grandpas, or a specific friend or two. And Daisy jumps up on the bed and licks away my tears.
*******
Its not easy, just 'being' with someone who isn't able to do more than just exist. But its powerful and peaceful for both parties. It can feel awkward at first, but I'm guessing that's because not many of us know how to just sit and be, without doing anything else. Once you relax and appreciate the presence of the other person, you are able to open up to what is really happening. The language of the heart is spoken in these silences, the quiet still places where people can just exist with one another.
Of course, you don't have to be with a sick person in the hospital to do this. I'm sure we've all spent time with someone where we could just 'be', that we've heard the heart speak. However, I think that consciously choosing to be still with someone who is very ill is one way to experience this gift. I hope that you are able to experience this quiet and still miracle in your lifetime too.
Spending so much time in bed is getting boring and lonely. I've been feeling rather isolated by my inability to function in the world. I haven't been out of the house since Friday. As I lie in bed trying to rest, I can't help but think one thing.
"I just want to hold someone's hand."
I don't want to have to talk, or do anything. I just want quiet, comforting companionship.
The dogs have been by my side nearly the whole time I'm in bed. It helps to reach a hand or foot out to touch them. But its not the same as a human.
As I long for this, my mind wanders back to when my grandpa was really sick in the hospital. I was only 8, and he was paralyzed on half of his body and couldn't talk. But my mom told me to go ahead and go up to him and hold his hand. That he would would like it. I've held other people's hands when they were sick and dying.
Being in this lonely place lets me see the gift I gave them. I didn't expect them to do anything, and I didn't do anything but let them know I was there with them, that they weren't alone.
*******
As I set the computer aside for a cry just now, I can feel that I'm not alone either. Someone is holding my right hand, and someone else has their arm around my shoulder. I wouldn't be surprised if its both of my grandpas, or a specific friend or two. And Daisy jumps up on the bed and licks away my tears.
*******
Its not easy, just 'being' with someone who isn't able to do more than just exist. But its powerful and peaceful for both parties. It can feel awkward at first, but I'm guessing that's because not many of us know how to just sit and be, without doing anything else. Once you relax and appreciate the presence of the other person, you are able to open up to what is really happening. The language of the heart is spoken in these silences, the quiet still places where people can just exist with one another.
Of course, you don't have to be with a sick person in the hospital to do this. I'm sure we've all spent time with someone where we could just 'be', that we've heard the heart speak. However, I think that consciously choosing to be still with someone who is very ill is one way to experience this gift. I hope that you are able to experience this quiet and still miracle in your lifetime too.
Thursday, July 14, 2011
Second LLMD appt and playing with plaquenil
I had my second LLMD appt last week. I really would like to state that I LOVE THIS LADY!!!!! She is very thorough, and loved that I wrote out which symptoms changed. She went over my whole symptom list, the lyme symptom list, and a general body systems list in addition to a physical exam. I'm doing ok. Not stellar, but not terrible, just like I thought.
The fact that my lab tests came back negative does not change the fact that I have clinical chronic lyme disease. Nor will it change our course of treatment. Having a herx reaction right away cements that I do in fact have lyme disease, because they only occur with spirochete infections.
While going through the system check, she touched on thyroid. I mentioned my maternal history and the fact that I have several hypothyroid symptoms, yet all my labs have been within the normal range for years. She said, "Sometimes people have slow metabolisms and do better on a low dose of thyroid meds even though their labs are normal."
I nearly fell off my chair with excitement, because I have read that before, but had never come across a doctor who believed it! So, she instructed me to take my temperature 3 times a day and take the average of them. A low temperature is proof of a slow metabolism, and if I do this, she will be able to prescribe me some synthroid to try! I am SUPER excited about this prospect, because I have thought and wondered about this for years but nobody was willing to help me. So far, my temp hasn't even hit 98.6, even when I've been feeling feverish. Most of the averages are 97.5. However, each of my afternoon temps are higher than the others, which I believe is a symptom of lyme & co in and of itself. I'm looking forward to the next appt to see what she says!
Since I have had so much gastric upset and sun problems with the current dose of azithromycin, she kept it the same. Thank GOD!!!!! She wants me tolerating it well before we increase it. My stomach seems to be doing a bit better on it in the past week, so maybe next month it will go up. She also added in 400 mg of plaquenil each day, giving me the instructions that I can take it as I wish (they come in 200mg tablets), as long as I get the 400mg each day. I've been playing around with that, starting it on this past monday, because we had a big trip planned for that weekend. She suggested that I find a good refrigerated probiotic, as it helps keep the organisms fresher. I just started a new pack of 30 of what I currently have, so I'll do that when I'm done with this stuff. I seem to be doing fairly well on that front though. She also suggested I start taking chelated magnesium, for all my aches and pains, up to 2 grams daily, as I can tolerate. I'm still trying to find some good stuff.
The plaquenil is something fierce! It has caused me moderate nausea (its bad, but I'm not puking from it) and the bugs really don't like it. I have tried taking it a number of different ways. 200mg with the rest of my morning pills causes too much nausea. A late morning dose and early afternoon dose (without anything else taken with it) was pretty bad nausea too, and I ended up with the biggest herx I've had yet. Yes, its good, cuz it means the bugs are dying, but its also bad to have to endure, and the neurotoxins can actually cause damage if there is too much of them around for too long. So today, I'm trying out taking the entire 400mg with dinner, so I avoid mixing them with other meds, and I can sleep through most of the bad stuff.
Taking them with a big meal has helped with the nausea, but it has caused quite a bit of gas. Interestingly enough, I'm starting to feel my cheeks flush just 2 hours after taking it. Pretty soon its bedtime, so we'll see how I sleep and feel in the morning. I'm hoping its a go!
I really want to kill these damn buggers, but it would be nice if we can avoid a repeat of yesterday. I needed to stay in bed most of the afternoon and evening, and had to abandon making supper, right in the middle of things. I've been trying to be prepared for things to get worse, but now that that reality is looking me in the face, I have to admit I'm kind of scared. I couldn't take care of my family, and it was all I could do to get up to go to the bathroom or get a drink of water.
Today I've been feeling much better, my body felt lighter and I didn't hurt as much. If I can time the plaquenil doses right so they do the killing while I sleep, this might be a doable arrangement. I want them GONE, but I also want to be able to function.
The fact that my lab tests came back negative does not change the fact that I have clinical chronic lyme disease. Nor will it change our course of treatment. Having a herx reaction right away cements that I do in fact have lyme disease, because they only occur with spirochete infections.
While going through the system check, she touched on thyroid. I mentioned my maternal history and the fact that I have several hypothyroid symptoms, yet all my labs have been within the normal range for years. She said, "Sometimes people have slow metabolisms and do better on a low dose of thyroid meds even though their labs are normal."
I nearly fell off my chair with excitement, because I have read that before, but had never come across a doctor who believed it! So, she instructed me to take my temperature 3 times a day and take the average of them. A low temperature is proof of a slow metabolism, and if I do this, she will be able to prescribe me some synthroid to try! I am SUPER excited about this prospect, because I have thought and wondered about this for years but nobody was willing to help me. So far, my temp hasn't even hit 98.6, even when I've been feeling feverish. Most of the averages are 97.5. However, each of my afternoon temps are higher than the others, which I believe is a symptom of lyme & co in and of itself. I'm looking forward to the next appt to see what she says!
Since I have had so much gastric upset and sun problems with the current dose of azithromycin, she kept it the same. Thank GOD!!!!! She wants me tolerating it well before we increase it. My stomach seems to be doing a bit better on it in the past week, so maybe next month it will go up. She also added in 400 mg of plaquenil each day, giving me the instructions that I can take it as I wish (they come in 200mg tablets), as long as I get the 400mg each day. I've been playing around with that, starting it on this past monday, because we had a big trip planned for that weekend. She suggested that I find a good refrigerated probiotic, as it helps keep the organisms fresher. I just started a new pack of 30 of what I currently have, so I'll do that when I'm done with this stuff. I seem to be doing fairly well on that front though. She also suggested I start taking chelated magnesium, for all my aches and pains, up to 2 grams daily, as I can tolerate. I'm still trying to find some good stuff.
The plaquenil is something fierce! It has caused me moderate nausea (its bad, but I'm not puking from it) and the bugs really don't like it. I have tried taking it a number of different ways. 200mg with the rest of my morning pills causes too much nausea. A late morning dose and early afternoon dose (without anything else taken with it) was pretty bad nausea too, and I ended up with the biggest herx I've had yet. Yes, its good, cuz it means the bugs are dying, but its also bad to have to endure, and the neurotoxins can actually cause damage if there is too much of them around for too long. So today, I'm trying out taking the entire 400mg with dinner, so I avoid mixing them with other meds, and I can sleep through most of the bad stuff.
Taking them with a big meal has helped with the nausea, but it has caused quite a bit of gas. Interestingly enough, I'm starting to feel my cheeks flush just 2 hours after taking it. Pretty soon its bedtime, so we'll see how I sleep and feel in the morning. I'm hoping its a go!
I really want to kill these damn buggers, but it would be nice if we can avoid a repeat of yesterday. I needed to stay in bed most of the afternoon and evening, and had to abandon making supper, right in the middle of things. I've been trying to be prepared for things to get worse, but now that that reality is looking me in the face, I have to admit I'm kind of scared. I couldn't take care of my family, and it was all I could do to get up to go to the bathroom or get a drink of water.
Today I've been feeling much better, my body felt lighter and I didn't hurt as much. If I can time the plaquenil doses right so they do the killing while I sleep, this might be a doable arrangement. I want them GONE, but I also want to be able to function.
Sunday, June 12, 2011
Goodbye amoxicillin!
Thankfully, today is the last day of amoxicillin. I'm hoping that I'll start to feel a little better with less abx on board. The sad thing is that this is just the beginning. I get a few weeks' 'break', that is, if you call taking 500 mg of azithromycin for a month a break, and then we'll be adding more stuff in and perhaps increasing the zith. UGH!!!
I've been really exhausted and sore. My armpits have been really tender and wearing a bra is painful. No, I don't wear underwires, either. I discovered today that my rice filled hot pack feels nice on it. Doesn't completely take away the pain, but it is very soothing feeling.
Yesterday I had a bunch of gastric effects. Noticeable pain and a little diarrhea. Today it was better. I find it interesting how each day has been different.
I'm trying to figure out what to do when I'm too tired to be up and around, yet not tired enough to fall asleep. I tried listening to an audiobook and podcast, but I must have been in the wrong mood or didn't get the right ones or something cuz they didn't really do much for me and were almost irritating. Perhaps today would have been a better day to try and fall asleep.
I did figure out how to knit lying down though! I need an extra pillow under my head and a one under each elbow. Maybe I'll be able to do more of that.
I'm thinking of making list and basket or something of things I'll need when I need to be in bed.
Water
snacks
knitting
books
iPhone/iPad
laptop
cat and dog
Its really nice how my pets like to hang around me. Very comforting. They each have their own energy and it actually benefits me. If I'm in a lot of pain and can touch both Daisy and Shane (like with a hand and foot), I feel HUGE improvements. Daisy has a very sweet and healing, nurturing sort of energy and Shane is very grounding. And Pif is really starting to spend a lot of time with me when I'm in bed. I find it awesome and sweet! I've really missed having cats and am SO glad that Jared thought to finally ask his friends who breed bengals if they had a cat that would fit our situation. He told me we'd be getting one of their retired breeders on my birthday! He really doesn't have much of an allergic reaction to her at all. I'm so blessed!! I'm still trying to figure out exactly what kind of energy Pif adds to the mix, but I'm leaning towards energized and vibrant.
Reality has been hitting me and its very daunting. I've just had 5 days of treatment and this may have to go on for YEARS! I haven't been able to empty or fill the dishwasher in one sweep! There's just so many things that are hard for me to accept. To write it all out is just too depressing. I'm trying to focus on the positives and remain hopeful and upbeat. But I imagine I'll be going through even darker times than this.
I feel as if I need to let go of ALLLLL expectations and just do what I can and not have to try and live up to anything. No housework, no mothering, no wifeing, no socializing. Just existing. And that's a huge challenge, maybe even moreso than the fight within my body. I have responsibilities! I can't just drop them like a hot potato! And none of those things are things that are disposable, yanno? I CAN'T just ignore my 3 year old! And the house needs to have at least a certain level of cleanliness to live in it comfortably. I can't ignore my husband's needs, and not doing anything for my own enjoyment would lead to bad things too.
Its scary.
But you have to go THROUGH the forest to get out of it, right? There WILL be good days, glimmers of light. And the end. I don't know what the path looks like yet and where the final destination will be.
I've been really exhausted and sore. My armpits have been really tender and wearing a bra is painful. No, I don't wear underwires, either. I discovered today that my rice filled hot pack feels nice on it. Doesn't completely take away the pain, but it is very soothing feeling.
Yesterday I had a bunch of gastric effects. Noticeable pain and a little diarrhea. Today it was better. I find it interesting how each day has been different.
I'm trying to figure out what to do when I'm too tired to be up and around, yet not tired enough to fall asleep. I tried listening to an audiobook and podcast, but I must have been in the wrong mood or didn't get the right ones or something cuz they didn't really do much for me and were almost irritating. Perhaps today would have been a better day to try and fall asleep.
I did figure out how to knit lying down though! I need an extra pillow under my head and a one under each elbow. Maybe I'll be able to do more of that.
I'm thinking of making list and basket or something of things I'll need when I need to be in bed.
Water
snacks
knitting
books
iPhone/iPad
laptop
cat and dog
Its really nice how my pets like to hang around me. Very comforting. They each have their own energy and it actually benefits me. If I'm in a lot of pain and can touch both Daisy and Shane (like with a hand and foot), I feel HUGE improvements. Daisy has a very sweet and healing, nurturing sort of energy and Shane is very grounding. And Pif is really starting to spend a lot of time with me when I'm in bed. I find it awesome and sweet! I've really missed having cats and am SO glad that Jared thought to finally ask his friends who breed bengals if they had a cat that would fit our situation. He told me we'd be getting one of their retired breeders on my birthday! He really doesn't have much of an allergic reaction to her at all. I'm so blessed!! I'm still trying to figure out exactly what kind of energy Pif adds to the mix, but I'm leaning towards energized and vibrant.
Reality has been hitting me and its very daunting. I've just had 5 days of treatment and this may have to go on for YEARS! I haven't been able to empty or fill the dishwasher in one sweep! There's just so many things that are hard for me to accept. To write it all out is just too depressing. I'm trying to focus on the positives and remain hopeful and upbeat. But I imagine I'll be going through even darker times than this.
I feel as if I need to let go of ALLLLL expectations and just do what I can and not have to try and live up to anything. No housework, no mothering, no wifeing, no socializing. Just existing. And that's a huge challenge, maybe even moreso than the fight within my body. I have responsibilities! I can't just drop them like a hot potato! And none of those things are things that are disposable, yanno? I CAN'T just ignore my 3 year old! And the house needs to have at least a certain level of cleanliness to live in it comfortably. I can't ignore my husband's needs, and not doing anything for my own enjoyment would lead to bad things too.
Its scary.
But you have to go THROUGH the forest to get out of it, right? There WILL be good days, glimmers of light. And the end. I don't know what the path looks like yet and where the final destination will be.
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