I don't like giving my Lyme disease more of a platform then it already has in my life.
But it's not going to keep me silent either.
I'll be honest - living life with this disease sucks sometimes but my life is wonderful. One of my personal philosophies is that everything happens for a reason and while I would like to not be inhibited by this bacteria, my body is host to it and therefore I will live with it, learn about it, combat it, but live my wonderful life.
Today I fought through intense nausea and dizziness to make a nice dinner for my family. Sure, I had to lean heavily against the counter at times, take a break while mixing cookie dough and move a little slower. But I wasn't going to let it steal that moment from me.
That's a part of me it cannot have.
Yes, it can take my breath at times.
Yes, it can redirect my attention from doing the dishes to sitting on the couch for a minute.
Yes, it slows me midstep.
But I keep breathing. I keep walking.
There are only so many things I'm willing to let it have.
I have to know that I have a choice.
Yes, there are afternoons it puts me in bed.
Yes, it has hidden a few memories from my mental view.
But I won't give it the satisfaction of halting me. It can't have me.
I will always fight this thing and its level of control over my life.
I'm not willing to roll over and surrender to it just yet.
Wednesday, February 24, 2010
It's been a long time....
I couldn't really believe how long it's been since I've blogged here! I have been writing about my health but on my other blog where I document my daily day-to-day musings. I took the time this afternoon to copy some of my health related blogs over here.
I don't like giving this disease more of a platform then it already has in my life; I think that's why I have a hard time blogging here. It's like acknowledging that it does have a place in my existence when I spend so much time concentrating on the blessed parts of my life. (more on that coming later!)
But I was re-reading over my old posts here and felt really glad that I'd started documenting my symptoms and my treatment. It was helping me remember. And maybe one day it will help other people.
The past couple weeks have been rough in the Lyme realm of my life. I've had this persistent head pain on the left side of my skull, which, turns out, I was battling in August too but had forgotten. It's a pain that centers around my temple and then spreads into my teeth and jaw and eye. It hurts so bad. I've had a reprieve from it the past couple days but this morning while I was talking to my mom at the breakfast table, it HIT me but this time on the right side.
How can I go from feeling perfectly fine to holding my head in pain? It just doesn't make sense. And if it doesn't make sense to me, how can I explain it to other people?
I can't remember anything it seems like. I have to ask questions moments after I've spoken. "Did you say that?" "Did I say......?"
Sleeplessness remains an issue although I have to say the past three nights I've slept. And woke up with my covers perfectly over me the way I'd put them the night before. Usually it looks like someone's been massacred in my bed in the mornings. I've tried not to lay on my stomach as three times now, a piercing pain has raked up and down my back, making me cry out aloud. It's those random moments of hurt that catch me off guard.
The evening nausea is back although today it got an early start. By noon I couldn't stand or walk without intense nausea. It eventually passed.
Two days ago I was making lasagna and it exhausted me. I was laying the noodles out in the pan and the pain in my shoulders was so intense. I had to take a break today while stirring sugar cookie dough.
I did find a breakthrough in taking my supplements! I've been buying Yoplait smoothie mixes in the frozen section in Wal-Mart; you just have to add milk so it's quick and easy! I make one every morning and break open all my supplements and pour them in. I'm even able to break up my allergy and thyroid pills and put them in too. This was huge for me since pill fatigue is why, in the past, I've quit taking my medication and supplements. Doing it this way, I only have to actually swallow five pills. I was so pumped!
Life is good, you know. Life with Lyme is good.
I don't like giving this disease more of a platform then it already has in my life; I think that's why I have a hard time blogging here. It's like acknowledging that it does have a place in my existence when I spend so much time concentrating on the blessed parts of my life. (more on that coming later!)
But I was re-reading over my old posts here and felt really glad that I'd started documenting my symptoms and my treatment. It was helping me remember. And maybe one day it will help other people.
The past couple weeks have been rough in the Lyme realm of my life. I've had this persistent head pain on the left side of my skull, which, turns out, I was battling in August too but had forgotten. It's a pain that centers around my temple and then spreads into my teeth and jaw and eye. It hurts so bad. I've had a reprieve from it the past couple days but this morning while I was talking to my mom at the breakfast table, it HIT me but this time on the right side.
How can I go from feeling perfectly fine to holding my head in pain? It just doesn't make sense. And if it doesn't make sense to me, how can I explain it to other people?
I can't remember anything it seems like. I have to ask questions moments after I've spoken. "Did you say that?" "Did I say......?"
Sleeplessness remains an issue although I have to say the past three nights I've slept. And woke up with my covers perfectly over me the way I'd put them the night before. Usually it looks like someone's been massacred in my bed in the mornings. I've tried not to lay on my stomach as three times now, a piercing pain has raked up and down my back, making me cry out aloud. It's those random moments of hurt that catch me off guard.
The evening nausea is back although today it got an early start. By noon I couldn't stand or walk without intense nausea. It eventually passed.
Two days ago I was making lasagna and it exhausted me. I was laying the noodles out in the pan and the pain in my shoulders was so intense. I had to take a break today while stirring sugar cookie dough.
I did find a breakthrough in taking my supplements! I've been buying Yoplait smoothie mixes in the frozen section in Wal-Mart; you just have to add milk so it's quick and easy! I make one every morning and break open all my supplements and pour them in. I'm even able to break up my allergy and thyroid pills and put them in too. This was huge for me since pill fatigue is why, in the past, I've quit taking my medication and supplements. Doing it this way, I only have to actually swallow five pills. I was so pumped!
Life is good, you know. Life with Lyme is good.
Blogged January 20, 2010
I don't feel good.
A lot of people, including me, were worried about how I would do with the physical work here at the ranch. I've surprised myself, really, with the amount I've been able to do while still feeling good to okay.
I remember reading an article saying that even though patients with Lyme Disease feel so sluggish and can hardly find the energy to walk across the room, it is essential to their health to exercise and keep their muscles and joints moving. I think that's why I've been able to keep up with just a few limitations.
I still have persistent symptoms.
Things like inability to sleep without medical aid, nights where my legs are bouncing off the bed in involuntary muscle spasms, and medium brain fog. But starting last night and through today my back, left shoulder, and right hip have just been aching. Deep, bone, tissue ache. It kept me from sleeping last night. How can you get comfortable when your left shoulder and right hip keep you from laying comfortably in any position? It was definitely a night for my heating pad, which I do love.
Today the ache has extended into the right side of my neck, my right ear, my left temple.
I hope, I really hope that this only lasts for a day and that tomorrow these migrating symptoms will have migrated themselves gone.
A lot of people, including me, were worried about how I would do with the physical work here at the ranch. I've surprised myself, really, with the amount I've been able to do while still feeling good to okay.
I remember reading an article saying that even though patients with Lyme Disease feel so sluggish and can hardly find the energy to walk across the room, it is essential to their health to exercise and keep their muscles and joints moving. I think that's why I've been able to keep up with just a few limitations.
I still have persistent symptoms.
Things like inability to sleep without medical aid, nights where my legs are bouncing off the bed in involuntary muscle spasms, and medium brain fog. But starting last night and through today my back, left shoulder, and right hip have just been aching. Deep, bone, tissue ache. It kept me from sleeping last night. How can you get comfortable when your left shoulder and right hip keep you from laying comfortably in any position? It was definitely a night for my heating pad, which I do love.
Today the ache has extended into the right side of my neck, my right ear, my left temple.
I hope, I really hope that this only lasts for a day and that tomorrow these migrating symptoms will have migrated themselves gone.
Blogged November 12, 2009
Tonight I forgot the money value of a dime.
That's the embarrassing part of this disease - when it catches me off guard and leaves me scratching my head, thinking that a pile of ten dimes is ten cents while another part of my brain argues with me "something about that doesn't sound right." So I picked up the pile of ten dimes and counted them slowly into my palm, twice. "Wait, one dime is ten cents - ten dimes is a dollar." That makes perfect sense.
Tonight I let myself cry a few tears of frustration.
A friend visited me; a friend who shares the same disease I do. She's the same friend I was supposed to spend the day with riding horses in the woods yesterday, an old past-time of ours. It was going to be our going-away day before I leave. Instead, we spent the afternoon curled up on her couches watching episodes of NCIS because I was in too much pain to walk much less ride. I fell asleep for 45 minutes too.
She cried a few tears with me tonight then we laughed, gossiped a little, ate enchiladas and laughed.
Tonight I got dizzy and ran into a couple of doors.
Tonight I left my cellphone downstairs but was too tired to go get it.
Tonight I got stressed and a fever ensued.
Tonight I put supper in the oven and forgot about it. It burned.
Not every night is like tonight; don't get the wrong idea.
Tonight is just one of those nights.
But, for all the bad, I'm thankful for all the good.
And choosing now to be blessed because, well, I am.
Even on nights like tonight.
That's the embarrassing part of this disease - when it catches me off guard and leaves me scratching my head, thinking that a pile of ten dimes is ten cents while another part of my brain argues with me "something about that doesn't sound right." So I picked up the pile of ten dimes and counted them slowly into my palm, twice. "Wait, one dime is ten cents - ten dimes is a dollar." That makes perfect sense.
Tonight I let myself cry a few tears of frustration.
A friend visited me; a friend who shares the same disease I do. She's the same friend I was supposed to spend the day with riding horses in the woods yesterday, an old past-time of ours. It was going to be our going-away day before I leave. Instead, we spent the afternoon curled up on her couches watching episodes of NCIS because I was in too much pain to walk much less ride. I fell asleep for 45 minutes too.
She cried a few tears with me tonight then we laughed, gossiped a little, ate enchiladas and laughed.
Tonight I got dizzy and ran into a couple of doors.
Tonight I left my cellphone downstairs but was too tired to go get it.
Tonight I got stressed and a fever ensued.
Tonight I put supper in the oven and forgot about it. It burned.
Not every night is like tonight; don't get the wrong idea.
Tonight is just one of those nights.
But, for all the bad, I'm thankful for all the good.
And choosing now to be blessed because, well, I am.
Even on nights like tonight.
Blogged November 11, 2009
If I had health insurance, I would be laying in a hospital bed right now, hopefully (blissfully) hooked up to morphine and other delicious narcotics that would have taken the edge off the pain I was in last night and this morning.
Instead, I laid in bed, writhing around, rating my pain as an 11 on a scale of one to 10.
I couldn't lay in one position for too long for fear of getting stiff but moving hurt too much. I hit a mental wall, where the physical pain was beginning to affect my mind.
I started thinking things like, "What if it never stops?", "What if I can never get it under control?" Panic slowly started to seep into my cells.
Then I remembered - I'd watched a friend go into labor and manage her pain by using HypnoBabies. While I clearly was not giving birth, I wondered if I could manage my pain by those same techniques.
I turned on Pandora Casting Crowns radio, laid it on my pillow, and closed my eyes. I envisioned a "calming center" in my core, a rotating ball where, as I felt wave upon wave of pain, I would put it there and the pain would leave whatever part of my body it was plaguing.
At first, it was a struggle just to acknowledge my "calming center". I felt the pain still trying to take over but I consistently resisted the urge to panic until I methodically and calmly placed the pain in the ball.
Three hours later, I'd slept peacefully and woke up refreshed and nearly painfree.
Now, it is time for me to go lay down and try to sleep, purging my pain.
Instead, I laid in bed, writhing around, rating my pain as an 11 on a scale of one to 10.
I couldn't lay in one position for too long for fear of getting stiff but moving hurt too much. I hit a mental wall, where the physical pain was beginning to affect my mind.
I started thinking things like, "What if it never stops?", "What if I can never get it under control?" Panic slowly started to seep into my cells.
Then I remembered - I'd watched a friend go into labor and manage her pain by using HypnoBabies. While I clearly was not giving birth, I wondered if I could manage my pain by those same techniques.
I turned on Pandora Casting Crowns radio, laid it on my pillow, and closed my eyes. I envisioned a "calming center" in my core, a rotating ball where, as I felt wave upon wave of pain, I would put it there and the pain would leave whatever part of my body it was plaguing.
At first, it was a struggle just to acknowledge my "calming center". I felt the pain still trying to take over but I consistently resisted the urge to panic until I methodically and calmly placed the pain in the ball.
Three hours later, I'd slept peacefully and woke up refreshed and nearly painfree.
Now, it is time for me to go lay down and try to sleep, purging my pain.
Sunday, August 16, 2009
It's time...again
It's been about 7 weeks since I've been off my meds and what a glorious sun-filled 7 weeks it's been! I have loved just floating on the lake, laying by the pool and floating down rivers and soaking up as many restorative sun rays as possible.
But it's time to go back on the meds. And I've got three weeks to do it before I'll take another break when I got to Gulf Shores.
One thing this disease has made me do is listen to my body. Right now it's crying for justice, for wellness and I must oblige.
My symptoms have become increasingly more neurologic and muscular over the past week. Neurologic symptoms include: intense brain fog, nearly constant ringing ears, cloudy eyes, loss of memory and dizzy spells.
Muscle-wise, I want to and have cried. I can't believe I'm the person I am today when I consider what I was capable of doing two years ago. I worked tirelessly on a farm, rode horses every weekend, hauled hay, moved furniture, etc., etc., etc. I worked out, walked miles, kickboxed and on the list goes.
This morning I couldn't stand through the whole worship service in church. Holding a 10-pound baby, I had to shift arms to hold her up. Tonight when I poured water for a cup of tea, I had to stop halfway through pouring and switch arms. My weakness is mindblowing.
My back hurts almost constantly, my legs feel like jell-o and hurt to the touch.
Yes, it's time to make a change.
I've been doing research on herbal supplements that are supposed to help inflammation and immune dysfunction. It's overwhelming but I'm determined to plow ahead and try a few things.
I've also heard that the FIT FOR LIFE diet guidelines has been helpful to LD patients so I bought the book yesterday and have been reading up on it. I'm not worried at this point about weight loss - my jacked up thyroid and LD has made it pretty clear I won't be losing it anytime soon. My concern lies in the toxins in my body and how much of what I currently eat is feeding the bacteria. I'm going to finish reading the book and prayerfully make some changes that will hopefully help.
Cheers to me and doxy tomorrow! I'm resuming on a half-dose to see if the nausea I'd gotten towards the end of my last round will return. If it does, it's time for a new antibiotic. Yay!
But it's time to go back on the meds. And I've got three weeks to do it before I'll take another break when I got to Gulf Shores.
One thing this disease has made me do is listen to my body. Right now it's crying for justice, for wellness and I must oblige.
My symptoms have become increasingly more neurologic and muscular over the past week. Neurologic symptoms include: intense brain fog, nearly constant ringing ears, cloudy eyes, loss of memory and dizzy spells.
Muscle-wise, I want to and have cried. I can't believe I'm the person I am today when I consider what I was capable of doing two years ago. I worked tirelessly on a farm, rode horses every weekend, hauled hay, moved furniture, etc., etc., etc. I worked out, walked miles, kickboxed and on the list goes.
This morning I couldn't stand through the whole worship service in church. Holding a 10-pound baby, I had to shift arms to hold her up. Tonight when I poured water for a cup of tea, I had to stop halfway through pouring and switch arms. My weakness is mindblowing.
My back hurts almost constantly, my legs feel like jell-o and hurt to the touch.
Yes, it's time to make a change.
I've been doing research on herbal supplements that are supposed to help inflammation and immune dysfunction. It's overwhelming but I'm determined to plow ahead and try a few things.
I've also heard that the FIT FOR LIFE diet guidelines has been helpful to LD patients so I bought the book yesterday and have been reading up on it. I'm not worried at this point about weight loss - my jacked up thyroid and LD has made it pretty clear I won't be losing it anytime soon. My concern lies in the toxins in my body and how much of what I currently eat is feeding the bacteria. I'm going to finish reading the book and prayerfully make some changes that will hopefully help.
Cheers to me and doxy tomorrow! I'm resuming on a half-dose to see if the nausea I'd gotten towards the end of my last round will return. If it does, it's time for a new antibiotic. Yay!
Friday, July 31, 2009
Under Our Skin
It's been a little over a month since I've posted here. Mostly, life has been about the same.
About a month ago, I was experiencing increased nausea from the doxy. So I tried to go to a half-dose but then ended up off of it. I've been off of everything for approximately a month. It was probably mostly selfish reasons - I'd gotten to the point where the number of pills I was taking a day were making me gag. And I wanted to be out in the sun.
I guess it was like a daily reminder that life with Lyme isn't completely normal.
But regardless of the medicine, I'm reminded on a near-daily basis that that is the case.
HEADACHE - the other day I was driving and the thought crossed my mind "i wonder what it feels like to NOT have a headache." It's not a headache like any other, either. It's only on the left side of my skull, though this isn't exclusive. Sometimes it switches sides. Last week, it was just the top part of my skull, all the way around. I could place my hand on the top of my head and it hurt to the touch. I was sitting on the floor of my friend's house playing with her little girl and all of a sudden it felt like you'd driven a nail through the top of my head. I had to go lay down.
But the headache I've had most recently has been on the left side of my skull - shooting pains through my temple in an electric fashion. Sometimes, it takes my breath.
BLURRED VISION - maybe this is part of the headache - I don't know. But my vision has been blurred, like I'm looking through water.
SLEEPLESSNESS - basically, I can't sleep. It takes me FOREVER to fall asleep and when I do, I never want to wake up. My alarm goes off and I just want to sleep more. I wake up feeling as exhausted, if not more, as when I went to bed. Really, I think if given the opportunity, I could sleep for at least a day. Part of me wants to try it. The other part feels guilty.
JOINT PAIN - a couple days last week, I couldn't walk down stairs without intense pain in my left ankle. I had to walk down them sideways to make it. And coming up stairs makes my legs feel like jell-o - so weak.
MEMORY - my short-term memory and parts of my long-term memory are gone. I can't remember where I put things, what I've told people, what I've done just moments after I've done them. I try to hide it around the people I live with but I think my sister notices these little things.
WEAKNESS IN MY RIGHT HAND - it's almost as if I've had a stroke. My right hand is so weak. I've dropped at least three cups of liquid today, and numerous other things. It's frustrating. But hopefully this symptom will pass soon.
BRAIN FOG - enough said.
After all the research I've done, I really think that UNDER OUR SKIN is the best. Please visit underourskin.com for information on the film and information on Lyme Disease. Here is an excerpt from a Lyme patient. It's almost like I wrote this, I can identify with everything he's saying. He's talking about dealing with:
..."the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue. The loud ringing in my ears. The terrible sleeplessness. The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke. The difficulty and frustration communicating with others, in finding the right words. The exaggerated emotions. The numbness in my feet that would turn to burning pain and pins and needles, the stabbing pains in my legs and feet..."
(the highlighted things are things I have on a daily basis but forget to mention sometimes)
One of my good friends just got out of the hospital after being there for 8 days. She has Lyme Disease. I'll tell more of her story later....
About a month ago, I was experiencing increased nausea from the doxy. So I tried to go to a half-dose but then ended up off of it. I've been off of everything for approximately a month. It was probably mostly selfish reasons - I'd gotten to the point where the number of pills I was taking a day were making me gag. And I wanted to be out in the sun.
I guess it was like a daily reminder that life with Lyme isn't completely normal.
But regardless of the medicine, I'm reminded on a near-daily basis that that is the case.
HEADACHE - the other day I was driving and the thought crossed my mind "i wonder what it feels like to NOT have a headache." It's not a headache like any other, either. It's only on the left side of my skull, though this isn't exclusive. Sometimes it switches sides. Last week, it was just the top part of my skull, all the way around. I could place my hand on the top of my head and it hurt to the touch. I was sitting on the floor of my friend's house playing with her little girl and all of a sudden it felt like you'd driven a nail through the top of my head. I had to go lay down.
But the headache I've had most recently has been on the left side of my skull - shooting pains through my temple in an electric fashion. Sometimes, it takes my breath.
BLURRED VISION - maybe this is part of the headache - I don't know. But my vision has been blurred, like I'm looking through water.
SLEEPLESSNESS - basically, I can't sleep. It takes me FOREVER to fall asleep and when I do, I never want to wake up. My alarm goes off and I just want to sleep more. I wake up feeling as exhausted, if not more, as when I went to bed. Really, I think if given the opportunity, I could sleep for at least a day. Part of me wants to try it. The other part feels guilty.
JOINT PAIN - a couple days last week, I couldn't walk down stairs without intense pain in my left ankle. I had to walk down them sideways to make it. And coming up stairs makes my legs feel like jell-o - so weak.
MEMORY - my short-term memory and parts of my long-term memory are gone. I can't remember where I put things, what I've told people, what I've done just moments after I've done them. I try to hide it around the people I live with but I think my sister notices these little things.
WEAKNESS IN MY RIGHT HAND - it's almost as if I've had a stroke. My right hand is so weak. I've dropped at least three cups of liquid today, and numerous other things. It's frustrating. But hopefully this symptom will pass soon.
BRAIN FOG - enough said.
After all the research I've done, I really think that UNDER OUR SKIN is the best. Please visit underourskin.com for information on the film and information on Lyme Disease. Here is an excerpt from a Lyme patient. It's almost like I wrote this, I can identify with everything he's saying. He's talking about dealing with:
..."the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue. The loud ringing in my ears. The terrible sleeplessness. The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke. The difficulty and frustration communicating with others, in finding the right words. The exaggerated emotions. The numbness in my feet that would turn to burning pain and pins and needles, the stabbing pains in my legs and feet..."
(the highlighted things are things I have on a daily basis but forget to mention sometimes)
One of my good friends just got out of the hospital after being there for 8 days. She has Lyme Disease. I'll tell more of her story later....
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