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.
Saturday, October 1, 2011
Monday, September 26, 2011
A little light and its shadow
Instead of only talking about my lyme treatment, I thought I'd share a bit about what its like to do things when you're this sick. This weekend some friends of ours got married. I've been looking forward to getting out and seeing people for a good month, planning things out so I wouldn't be overextended come the actual date.
Festivities started with a bachelorette party on Thursday. Plans were to go to a shooting range, have dinner and then go out to a strip club. I had already decided to skip the shooting range because it would have been too loud for me to enjoy. I planned on joining up with the group for dinner, and play it by ear for how late I'd be out. It was going to be good enough to even just go out to dinner.
That day came and I was feeling feverish and wobbly/weak. When it was time for supper, and I realized I wasn't feeling well enough to make food for my family, I had to accept that I was too sick to go out too. I was pretty irritated and disappointed, but I knew that if I had gone out, I would have been VERY miserable and the evening wouldn't have been enjoyable.
The day of the wedding came and I decided that I was going to get ready in stages, so that there would be plenty of time for me to recover between tasks. I washed my hair in the morning, and it left my limbs feeling like jello. Later, I got dressed, and then I realized that I was going to lay down before going and I wasn't going to rest in my dress! Jared was an usher, so he had to be there early, so Lizzie and I came later, but it also meant that I had to get both her and I ready by myself.
I got up from my rest early and got dressed and did my hair. I woke her up from her nap and got her in her dress and brushed her hair. We put on makeup together and then it was time to go. I had paced myself well! I was proud. THen we couldn't find Lizzie's shoes. In the process of looking for them, I left the door to the porch open, and the cat went out there. So then we had to get her back in the house too! I did not budget energy for these things! When we got to the car, I was exhausted.
I finally got a handicapped parking tag and I was SOOOOOOOOO thankful to have it! I was able to park right by the door instead of having to walk through the entire lot to get into the door of the building. It really saved me. As it was, I was moving pretty dang slow by the time we got to our seats. It was good to see friends, but it was rather embarrassing to hobble past them all with my cane at an agonizing pace. Nobody gave me funny looks or anything, but my mind came up with all kinds of not very nice things that I thought they were thinking about me. I'm still learning how to stop doing that, and its really tough.
The ceremony was beautiful and so were the brides. Afterwards, we walked down a long corridor to where the reception was held. Again, I was moving like a turtle stuck in molasses in January. I always walk at the very edge of halls and stuff when I'm moving slow so that people can pass me. Normally I feel good about it - like I'm being polite and considerate for those around me. This time it felt painful as the people I used to keep up with in my prime passed me by.
We got to the reception room and the first thing I looked for was a chair. Found one over in the corner and plopped down to catch my breath. They had a mirror ball going and every few seconds I got a flash in my eyes. It was painful. So, I dug out my sunglasses, deciding to look like a freak instead of getting a migraine. Although, it *just* occurred to me - my husband looks cool in his sunglasses, even if its indoors, so I probably looked like a glamour queen with a hangover in mine, not a freak (those damn negative voices!). Once someone came over and stood between me and the mirror ball, I took the sunglasses off.
There were a number of times when I felt left out because everyone was standing and talking, and I needed to sit. Its really hard to include someone in a conversation who's face isn't at the same level as the rest of the people! Yes, many of my friends came over and talked to me, told me how good it was to see me out and that they missed me. I was very grateful that I wasn't in fact invisible over in the corner.
I know it sounds like all I'm doing is complaining. But its more sharing the differences of my reality. And yeah, my reality isn't all fun and roses. Regardless, I had the best time that I've had in a LONG time!
The food was great, dessert was INCREDIBLE. I haven't enjoyed cheesecake that much in a LONG time (I'm on a low carb diet). I savored every bite and cataloged it for later. In that moment I was in heaven! It was so neat watching Lizzie dance like a maniac, and watch her charm nearly every person out onto the dance floor at one time or another. She had a boy chasing her around, and it was rather cute. All my friends loved her and had a lot of fun with her.
I went onto the dance floor 2 or 3 times, maybe dancing a total of a minute through the night. But I wiggled and grooved in my chair the rest of the time, wishing I could be out there with my girl and my friends. Had my body been able, I would have been dancing the whole night. I was half tempted to bring my chair onto the floor so I could dance with everyone anyway. As much as I would have felt like a sore thumb, I'm guessing people would have gotten a kick out of it.
And you know, I bet that most of my reservations of bringing my gimp out in public have to do with my own poor self-esteem rather than what people are actually thinking. This is something I should talk about more in therapy. Its part of the whole feeling ashamed of my disabilities.
Regardless of all those negative things my mind was throwing at me, I focused on all the fun and the joy and novelty of the evening. I got to see people I haven't seen in ages and I got to get out of the four walls of my house for something other than an appt. I lived each moment to the fullest that I could, reveling in all of it.
I relived some of my memories yesterday while I was lying in bed nursing my migraine. I also realized that all of my payback pain was from washing my hair! My trapezius muscles were screaming from where they attach at the base of my skull all the way down to where they end at the middle back, and out to each shoulder. While I'm relieved that there didn't seem to be a price for that much fun beyond the massive terrible headache, its really frustrating to know that something as simple as washing your hair causes that much pain and suffering. But, as I was lying there trying to get away from the pain, I had a wonderful evening of events to visit again, and it was one of the easiest times I've had dealing with a migraine.
Knowing that I'm still able to get out and enjoy myself makes such a huge difference in my prison of daily life! I trust that some day I'll be able to do it more often and with a need for less gimpage! But hell, even if I'm this much of a gimp for the rest of my life, I will learn to embrace it and be thankful that there are things that help me.
Festivities started with a bachelorette party on Thursday. Plans were to go to a shooting range, have dinner and then go out to a strip club. I had already decided to skip the shooting range because it would have been too loud for me to enjoy. I planned on joining up with the group for dinner, and play it by ear for how late I'd be out. It was going to be good enough to even just go out to dinner.
That day came and I was feeling feverish and wobbly/weak. When it was time for supper, and I realized I wasn't feeling well enough to make food for my family, I had to accept that I was too sick to go out too. I was pretty irritated and disappointed, but I knew that if I had gone out, I would have been VERY miserable and the evening wouldn't have been enjoyable.
The day of the wedding came and I decided that I was going to get ready in stages, so that there would be plenty of time for me to recover between tasks. I washed my hair in the morning, and it left my limbs feeling like jello. Later, I got dressed, and then I realized that I was going to lay down before going and I wasn't going to rest in my dress! Jared was an usher, so he had to be there early, so Lizzie and I came later, but it also meant that I had to get both her and I ready by myself.
I got up from my rest early and got dressed and did my hair. I woke her up from her nap and got her in her dress and brushed her hair. We put on makeup together and then it was time to go. I had paced myself well! I was proud. THen we couldn't find Lizzie's shoes. In the process of looking for them, I left the door to the porch open, and the cat went out there. So then we had to get her back in the house too! I did not budget energy for these things! When we got to the car, I was exhausted.
I finally got a handicapped parking tag and I was SOOOOOOOOO thankful to have it! I was able to park right by the door instead of having to walk through the entire lot to get into the door of the building. It really saved me. As it was, I was moving pretty dang slow by the time we got to our seats. It was good to see friends, but it was rather embarrassing to hobble past them all with my cane at an agonizing pace. Nobody gave me funny looks or anything, but my mind came up with all kinds of not very nice things that I thought they were thinking about me. I'm still learning how to stop doing that, and its really tough.
The ceremony was beautiful and so were the brides. Afterwards, we walked down a long corridor to where the reception was held. Again, I was moving like a turtle stuck in molasses in January. I always walk at the very edge of halls and stuff when I'm moving slow so that people can pass me. Normally I feel good about it - like I'm being polite and considerate for those around me. This time it felt painful as the people I used to keep up with in my prime passed me by.
We got to the reception room and the first thing I looked for was a chair. Found one over in the corner and plopped down to catch my breath. They had a mirror ball going and every few seconds I got a flash in my eyes. It was painful. So, I dug out my sunglasses, deciding to look like a freak instead of getting a migraine. Although, it *just* occurred to me - my husband looks cool in his sunglasses, even if its indoors, so I probably looked like a glamour queen with a hangover in mine, not a freak (those damn negative voices!). Once someone came over and stood between me and the mirror ball, I took the sunglasses off.
There were a number of times when I felt left out because everyone was standing and talking, and I needed to sit. Its really hard to include someone in a conversation who's face isn't at the same level as the rest of the people! Yes, many of my friends came over and talked to me, told me how good it was to see me out and that they missed me. I was very grateful that I wasn't in fact invisible over in the corner.
I know it sounds like all I'm doing is complaining. But its more sharing the differences of my reality. And yeah, my reality isn't all fun and roses. Regardless, I had the best time that I've had in a LONG time!
The food was great, dessert was INCREDIBLE. I haven't enjoyed cheesecake that much in a LONG time (I'm on a low carb diet). I savored every bite and cataloged it for later. In that moment I was in heaven! It was so neat watching Lizzie dance like a maniac, and watch her charm nearly every person out onto the dance floor at one time or another. She had a boy chasing her around, and it was rather cute. All my friends loved her and had a lot of fun with her.
I went onto the dance floor 2 or 3 times, maybe dancing a total of a minute through the night. But I wiggled and grooved in my chair the rest of the time, wishing I could be out there with my girl and my friends. Had my body been able, I would have been dancing the whole night. I was half tempted to bring my chair onto the floor so I could dance with everyone anyway. As much as I would have felt like a sore thumb, I'm guessing people would have gotten a kick out of it.
And you know, I bet that most of my reservations of bringing my gimp out in public have to do with my own poor self-esteem rather than what people are actually thinking. This is something I should talk about more in therapy. Its part of the whole feeling ashamed of my disabilities.
Regardless of all those negative things my mind was throwing at me, I focused on all the fun and the joy and novelty of the evening. I got to see people I haven't seen in ages and I got to get out of the four walls of my house for something other than an appt. I lived each moment to the fullest that I could, reveling in all of it.
I relived some of my memories yesterday while I was lying in bed nursing my migraine. I also realized that all of my payback pain was from washing my hair! My trapezius muscles were screaming from where they attach at the base of my skull all the way down to where they end at the middle back, and out to each shoulder. While I'm relieved that there didn't seem to be a price for that much fun beyond the massive terrible headache, its really frustrating to know that something as simple as washing your hair causes that much pain and suffering. But, as I was lying there trying to get away from the pain, I had a wonderful evening of events to visit again, and it was one of the easiest times I've had dealing with a migraine.
Knowing that I'm still able to get out and enjoy myself makes such a huge difference in my prison of daily life! I trust that some day I'll be able to do it more often and with a need for less gimpage! But hell, even if I'm this much of a gimp for the rest of my life, I will learn to embrace it and be thankful that there are things that help me.
Wednesday, August 31, 2011
Lots of Changes
My last appt has brought me lots of med changes. We doubled the zithromax, so I'm now taking a gram of it a day. We added back in the amoxicillin, like in the antibiotic challenge test at the very beginning - 1 gram, 3 times a day. The probenecid will probably be added in next month provided that everything is tolerated.
I asked her what her definition of tolerate is. According to her, I am tolerating things provided I am not vomiting or having diarrhea many times every day. I have to be completely honest and say that I was a little disappointed. *LOL* But, at the same time, it IS good to know where she draws the line. Clearly, I am not to that point yet, so we forge ahead!
Next month I will also most likely be starting an herb called artemesia. It works against babesia as well as borrelia. I am to do some research, learning about it, looking at different protocols for dosing info and stuff, and seeing what form is available to me. Interestingly enough, artemesia is wormwood. And distilled wormwood makes absinthe. You know, the liquor that has the reputation of causing hallucinations and craziness! I find it intriguing that absinthe can have (depending on how its made) those negative effects on us and it comes from the same plant that kills babesia. It is also used in some malaria treatments as well.
Both babesia and the critter that causes malaria are protozoans that live in blood cells. So a lot of the treatments are the same or similar. Hence the plaquenil I'm on, being used as an antimalarial, and the artemesia. And, interesting still is that they both can help fight borrelia too. I don't know about the mechanisms of artemesia yet, but plaquenil raises the pH of the vacuoles in cells, which makes them inhospitable to borrelia.
We added in the amoxicillin to target the form of borrelia that has a cell wall. The zithromax targets the form that doesn't have a cell wall, and plaquenil gets the cyst form out of the cells. So I'm really hitting them with big guns now. When we add in the artemesia and probenecid (to raise the plasma level of amoxicillin), I imagine they'll really be unhappy. YAY!!!!
Another big change that I have been so excited about is that I now am taking a thyroid supplement too! For a decade, I have been wondering if a lot of my symptoms have been from an underactive thyroid, or messed up thyroid metabolism. And finally my lyme doctor knew to look at what is going on with my body instead of focusing on lab results. She had me take my temperature 3 times a day for a month (I have to admit I probably forgot as many times as I remembered) and it turns out that my basal body temp is a good degree below normal (98.6). So she gave me a script for Armour thyroid. It is not synthroid, a synthetic form of T4, but rather a mix of both T3 and T4 that comes from ground up pig thyroid. Its the actual hormone, not a manufactured version of it. It kind of grosses me out a little, but if you really think about it, its no different than eating meat. Its not like I'm eating a raw organ - its been processed and stuff, and we use animal products for practically everything. I take it twice a day, an hour before I eat anything. I'm also supposed to continue to do the temp thing, probably to see how my metabolism responds to it.
So far, I do feel like I have more energy, a higher desire to move and get up and do things. However, when I actually get up to do stuff, my body protests. While the underlying drive to do things is higher, my body's capabilities to carry out tasks has not improved. So its kind of frustrating, but I deal. My temp has increased a bit too. A day or two after I started, it jumped almost a whole degree! Usually, when my temp goes up like that, I feel sick. Not this time! So its definitely doing something. However, the last few days, it has gone down a bit. So maybe my temp increased because of die off or something.
These days I live by the clock. I bring a thyroid pill to bed with me, so I can take it before I get up, so I don't have to wait as long to eat breakfast. An hour after I take that, I take my morning pile of pills with a protein shake made with kefir - a great source of probiotics (pbx). Antibiotics (abx) can't be taken with pbx, or you might as well not even take the pbx. You can take pbx an hour before abx, or 2 hours after abx. Its so complicated! So I can't take my morning abx with the rest of my morning pills because of the pbx I have with breakfast. An hour after breakfast I take my morning abx. Since I have a lower dose of pbx, I take it 3 times a day, so I have another dose 2 hours or so after the morning abx. Around 2 or 3, I take my second thyroid pill and another dose of pbx. At 4 or so is my afternoon meds and abx. I have to be careful of the timing of the thyroid and afternoon abx because I need to take food with the abx so I don't get as sick, but the thyroid needs an empty tummy! By 6, its another dose of pbx. Then around 8 I take my night pile of pills. Is your head spinning yet? *LOL* Thankfully, I have found a cool iPhone app that helps me set up a series of alarms and a checklist to keep me on track. But I just about had a meltdown trying to figure out the correct sequence and timing at the beginning!
I am also supposed to add in a magnesium supplement, but my list of meds is long enough as it is! I don't want to have to keep track of yet another thing. Besides, my pill box won't fit any more pills! I'm gonna need a new, big one soon. One with multiple boxes for each day. *sigh* Its rather depressing to think about.
But, beside the med side effects and die off side effects, I have been noticing improvements!!!
My air hunger and chest pains are almost all gone. My night sweats are almost gone. My anxiety is lowered. My headaches are drastically lowered. And my pain feels different. Its more migratory and fickle, not quite as anchored down in my body. I don't think I'm quite as hypersensitive about things either.
So its definitely great to see some progress when the meds make me feel so gross and tired. It makes it feel worth it and gives me some hope that some day my life and abilities will be much more reasonable.
I asked her what her definition of tolerate is. According to her, I am tolerating things provided I am not vomiting or having diarrhea many times every day. I have to be completely honest and say that I was a little disappointed. *LOL* But, at the same time, it IS good to know where she draws the line. Clearly, I am not to that point yet, so we forge ahead!
Next month I will also most likely be starting an herb called artemesia. It works against babesia as well as borrelia. I am to do some research, learning about it, looking at different protocols for dosing info and stuff, and seeing what form is available to me. Interestingly enough, artemesia is wormwood. And distilled wormwood makes absinthe. You know, the liquor that has the reputation of causing hallucinations and craziness! I find it intriguing that absinthe can have (depending on how its made) those negative effects on us and it comes from the same plant that kills babesia. It is also used in some malaria treatments as well.
Both babesia and the critter that causes malaria are protozoans that live in blood cells. So a lot of the treatments are the same or similar. Hence the plaquenil I'm on, being used as an antimalarial, and the artemesia. And, interesting still is that they both can help fight borrelia too. I don't know about the mechanisms of artemesia yet, but plaquenil raises the pH of the vacuoles in cells, which makes them inhospitable to borrelia.
We added in the amoxicillin to target the form of borrelia that has a cell wall. The zithromax targets the form that doesn't have a cell wall, and plaquenil gets the cyst form out of the cells. So I'm really hitting them with big guns now. When we add in the artemesia and probenecid (to raise the plasma level of amoxicillin), I imagine they'll really be unhappy. YAY!!!!
Another big change that I have been so excited about is that I now am taking a thyroid supplement too! For a decade, I have been wondering if a lot of my symptoms have been from an underactive thyroid, or messed up thyroid metabolism. And finally my lyme doctor knew to look at what is going on with my body instead of focusing on lab results. She had me take my temperature 3 times a day for a month (I have to admit I probably forgot as many times as I remembered) and it turns out that my basal body temp is a good degree below normal (98.6). So she gave me a script for Armour thyroid. It is not synthroid, a synthetic form of T4, but rather a mix of both T3 and T4 that comes from ground up pig thyroid. Its the actual hormone, not a manufactured version of it. It kind of grosses me out a little, but if you really think about it, its no different than eating meat. Its not like I'm eating a raw organ - its been processed and stuff, and we use animal products for practically everything. I take it twice a day, an hour before I eat anything. I'm also supposed to continue to do the temp thing, probably to see how my metabolism responds to it.
So far, I do feel like I have more energy, a higher desire to move and get up and do things. However, when I actually get up to do stuff, my body protests. While the underlying drive to do things is higher, my body's capabilities to carry out tasks has not improved. So its kind of frustrating, but I deal. My temp has increased a bit too. A day or two after I started, it jumped almost a whole degree! Usually, when my temp goes up like that, I feel sick. Not this time! So its definitely doing something. However, the last few days, it has gone down a bit. So maybe my temp increased because of die off or something.
These days I live by the clock. I bring a thyroid pill to bed with me, so I can take it before I get up, so I don't have to wait as long to eat breakfast. An hour after I take that, I take my morning pile of pills with a protein shake made with kefir - a great source of probiotics (pbx). Antibiotics (abx) can't be taken with pbx, or you might as well not even take the pbx. You can take pbx an hour before abx, or 2 hours after abx. Its so complicated! So I can't take my morning abx with the rest of my morning pills because of the pbx I have with breakfast. An hour after breakfast I take my morning abx. Since I have a lower dose of pbx, I take it 3 times a day, so I have another dose 2 hours or so after the morning abx. Around 2 or 3, I take my second thyroid pill and another dose of pbx. At 4 or so is my afternoon meds and abx. I have to be careful of the timing of the thyroid and afternoon abx because I need to take food with the abx so I don't get as sick, but the thyroid needs an empty tummy! By 6, its another dose of pbx. Then around 8 I take my night pile of pills. Is your head spinning yet? *LOL* Thankfully, I have found a cool iPhone app that helps me set up a series of alarms and a checklist to keep me on track. But I just about had a meltdown trying to figure out the correct sequence and timing at the beginning!
I am also supposed to add in a magnesium supplement, but my list of meds is long enough as it is! I don't want to have to keep track of yet another thing. Besides, my pill box won't fit any more pills! I'm gonna need a new, big one soon. One with multiple boxes for each day. *sigh* Its rather depressing to think about.
But, beside the med side effects and die off side effects, I have been noticing improvements!!!
My air hunger and chest pains are almost all gone. My night sweats are almost gone. My anxiety is lowered. My headaches are drastically lowered. And my pain feels different. Its more migratory and fickle, not quite as anchored down in my body. I don't think I'm quite as hypersensitive about things either.
So its definitely great to see some progress when the meds make me feel so gross and tired. It makes it feel worth it and gives me some hope that some day my life and abilities will be much more reasonable.
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.
Monday, July 18, 2011
Define "Tolerating"
I finally put in a call to my LLMD today about my symptoms and how I've been doing on the plaquenil. She liked how I figured out to take it at suppertime so I can sleep through most of the yuck from it. She also asked if I was tolerating it. And I'm not sure.
Right about now, I've spent most of the last 24 hours in bed. I laid down when Lizzie did in the afternoon and just haven't felt up to being up and responsible for anything. I was up last night to eat supper and that's about it. This morning I spent time in the living room in my chair watching Labyrinth with Lizzie for the first time, and then I went back to lay down. I wasn't feeling well enough to stand in the kitchen long enough to make myself a breakfast shake or get my meds. I got up again for lunch and to go to the bathroom and get drinks. But I've been lying in bed, trying to remain entertained, yet resting. And so far things on the computer have been interesting, but I feel like I need to rest my brain. Sitting up in bed to give my body a different position while typing this entry is exhausting.
Perhaps its time to spend a few days with Grandma. I don't have another appt until Thursday, so Lizzie and I could go up there and she could be entertained and taken care of well, and I could just lie there and rest. And Jared can work and not have to do double duty. I'll have to talk to everyone about that. My only concern is the heat, how poorly I do in it and the sun and how there isn't good AC in the truck. Maybe if we leave in the evening tonight it will be easier.
Regarding tolerating, I asked the ladies on my chronic illness forum that I haunt ALLLLL the time, how they define it. One said that it could be looked at as looking for "permission to stop treatment" vs "reassurance that its ok to continue". As miserable as I am, at this point I'm still on the reassurance side. Another said that she looks at tolerating something by seeing if she can still take care of herself and the animals that depend on her. I'm just barely squeaking by on that one, but I can't really take care of the animals and Button. Others said they define tolerating a med by the benefits of treatment outweighing the side effects. This one got me thinking.....
In my case, the side effects are nausea, headaches, stomach pain, and sun sensitivity for the most part. The results of treatment are killing the bugs. Yet killing the bugs cause effects in and of itself. I experience increased pain in my joints, flu-like aches, feverish feeling, swollen, painful lymph nodes and exhaustion and increased brain fog. Add all of that up and its pretty miserable.
But do I want to continue to let the Borellia have free reign over my body? Do I want to continue to deteriorate and become more disabled than I already am? I give a resounding HELL NO!!!!!
It reminds me a lot of cancer. Now granted, I haven't ever had it, so I don't really *know* what its like, but I do know a few things. The chemo drugs are toxic and cause some pretty yucky side effects. Yet when you take chemo drugs, they don't discriminate and only kill the cancer cells. Every cell that is dividing in your body dies. And this makes you really sick too. Its a double whammy. Its not the drugs themselves that cause your hair to fall out, its the cells in your hair follicles dying. Its a result of the treatment, not a side effect from the drugs.
How do you choose when treatment results land you in bed and unable to care for your family? I guess ultimately, cancer patients know that if they don't treat the cancer, they'll die. Is lyme disease a fatal one? Not immediately, no. But the lyme buggers can and DO cause permanent damage to your heart and nerves and joints if they're left to do their thing for too long. If they dig into the wrong places in your body, the damage they leave can eventually kill you, a very long, agonizing time later.
So I'm at the point where I'm seeing the choice I have to make. I'm seeing what the forest I have to travel through looks like. Its dark and rather scary. But if I want my life to improve, I have to keep going.
Right about now, I've spent most of the last 24 hours in bed. I laid down when Lizzie did in the afternoon and just haven't felt up to being up and responsible for anything. I was up last night to eat supper and that's about it. This morning I spent time in the living room in my chair watching Labyrinth with Lizzie for the first time, and then I went back to lay down. I wasn't feeling well enough to stand in the kitchen long enough to make myself a breakfast shake or get my meds. I got up again for lunch and to go to the bathroom and get drinks. But I've been lying in bed, trying to remain entertained, yet resting. And so far things on the computer have been interesting, but I feel like I need to rest my brain. Sitting up in bed to give my body a different position while typing this entry is exhausting.
Perhaps its time to spend a few days with Grandma. I don't have another appt until Thursday, so Lizzie and I could go up there and she could be entertained and taken care of well, and I could just lie there and rest. And Jared can work and not have to do double duty. I'll have to talk to everyone about that. My only concern is the heat, how poorly I do in it and the sun and how there isn't good AC in the truck. Maybe if we leave in the evening tonight it will be easier.
Regarding tolerating, I asked the ladies on my chronic illness forum that I haunt ALLLLL the time, how they define it. One said that it could be looked at as looking for "permission to stop treatment" vs "reassurance that its ok to continue". As miserable as I am, at this point I'm still on the reassurance side. Another said that she looks at tolerating something by seeing if she can still take care of herself and the animals that depend on her. I'm just barely squeaking by on that one, but I can't really take care of the animals and Button. Others said they define tolerating a med by the benefits of treatment outweighing the side effects. This one got me thinking.....
In my case, the side effects are nausea, headaches, stomach pain, and sun sensitivity for the most part. The results of treatment are killing the bugs. Yet killing the bugs cause effects in and of itself. I experience increased pain in my joints, flu-like aches, feverish feeling, swollen, painful lymph nodes and exhaustion and increased brain fog. Add all of that up and its pretty miserable.
But do I want to continue to let the Borellia have free reign over my body? Do I want to continue to deteriorate and become more disabled than I already am? I give a resounding HELL NO!!!!!
It reminds me a lot of cancer. Now granted, I haven't ever had it, so I don't really *know* what its like, but I do know a few things. The chemo drugs are toxic and cause some pretty yucky side effects. Yet when you take chemo drugs, they don't discriminate and only kill the cancer cells. Every cell that is dividing in your body dies. And this makes you really sick too. Its a double whammy. Its not the drugs themselves that cause your hair to fall out, its the cells in your hair follicles dying. Its a result of the treatment, not a side effect from the drugs.
How do you choose when treatment results land you in bed and unable to care for your family? I guess ultimately, cancer patients know that if they don't treat the cancer, they'll die. Is lyme disease a fatal one? Not immediately, no. But the lyme buggers can and DO cause permanent damage to your heart and nerves and joints if they're left to do their thing for too long. If they dig into the wrong places in your body, the damage they leave can eventually kill you, a very long, agonizing time later.
So I'm at the point where I'm seeing the choice I have to make. I'm seeing what the forest I have to travel through looks like. Its dark and rather scary. But if I want my life to improve, I have to keep going.
Sunday, July 17, 2011
SpiroChicks: My Tick Bite: A Quarter Million Dollar Nightmare
I subscribe to this blog and there was a very poignant and educational post in my email today. I wanted to share it, because I know there are a lot of people following my blog and it contains info about tick bite and lyme prevention that everyone should know, especially people living in lyme endemic areas.
SpiroChicks: My Tick Bite: A Quarter Million Dollar Nightmare: "By Alix, SpiroChicks Co-founder Twenty years ago this month, a tick bit my ankle. Five years later while in charge of a worldwide group a..."
SpiroChicks: My Tick Bite: A Quarter Million Dollar Nightmare: "By Alix, SpiroChicks Co-founder Twenty years ago this month, a tick bit my ankle. Five years later while in charge of a worldwide group a..."
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