I do enjoy writing. But these medicines make my head hurt and it's hard to focus. I am again putting off the continuation of my story and instead writing about more recent events that are much easier to recall!
I started my new medicine on Friday - it's a cyst-buster. Not to get too complicated, Lyme disease can form protective cysts in your body (I have no clue how big - probably tiny) and it is resistant to medicines. It just kind of hangs out in your body, hibernating, until prime conditions (illness, stress) arise for a reemergence. Unless you kill the cysts, the LD will be back again... and again...
My doctor told me to take the new medicine either every weekend or every other weekend. When I asked him why, he said - you'll see. And I did see. Boy, did I feel terrible. I took Friday off (I have to take the meds Friday, Saturday, Sunday) because I was really nervous about the affects it would have on me. I didn't feel too awful on Friday morning, but started getting head-achy, tired and having joint pain. It got worse Friday night. Saturday I think I slept away half the day (always a nice way to pass the time when you don't feel well), had some severe joint and muscle pain, headaches, stomach upset...
I was really hoping to make it to church on Sunday morning and prayed specifically that I'd be okay for Sunday School and the service. With the help of a couple Tylenol, I made it. Sunday afternoon/evening I still felt crappy but it didn't seem as bad - either my body started getting used to it or my plumb line for how bad I feel got readjusted.
I'm still feeling the affects today, Tuesday... but it's gradually getting better. I am very glad that I don't have to take this medicine every weekend.
In the meantime, I've been looking up some other peoples' blogs on Lyme disease - if you're interested, take a look down the left side of my blog and look under the header "Lyme Blogs". There are so many people with similar (and way worse) stories.
I also found a great article through one of them called The Spoon Theory. I've already sent it to a few friends - but if you've not heard of it, I highly recommend reading it. It's written by a woman who was asked by her best friend what it's like to be chronically ill. She gave a very good, visual explanation that will help you to understand a bit more of a what a loved one or friend or coworker might be going through if they deal with illness on a daily basis. Thankfully, I feel I am blessed to not deal with quite the degree of daily illness that the writer of this article expounds on. But I have had seasons of illness when I have felt exactly the way she explains it.
I think I'll end this one with a favorite Bible verse:
Whom have I in heaven but You? And there is nothing on earth that I desire besides You. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
~Psalm 73:25-26
Showing posts with label Lyme Disease. Show all posts
Showing posts with label Lyme Disease. Show all posts
Tuesday, September 13, 2011
Wednesday, September 7, 2011
*Insert Clever Title Here*
Well, this is not a continuation of my health saga. I'll get back to that sometime soon. Unfortunately, it's been a not so great week for me and the Lyme Disease.
Not to ruin the surprise (and what a great one it is) but I am still dealing with LD. I recently started medicine for it again, and it usually makes me feel worse instead of better. Lately, I've been really tired, mentally clouded (hence, the lack of blog posts lately), zombie-like, and I usually have a headache.
Thankfully, I don't always feel this way when I'm on medicine. There's good days and bad days, but I seem to be in a bad week. And it's probably going to end in a bad weekend. I'm nervous about starting a new medicine that I've never been on before. I'm supposed to take it only on the weekends (every or every other weekend) because it's probably going to make me feel really awful. I already don't feel so great, and I'm not looking forward to feeling worse. But I'm getting ahead of myself. We'll see what happens this weekend. At least I have a lot of books from the library, a comfy bed and an understanding husband.
On another subject, I've been mentally debating if I need to alter my diet. I already eat gluten free, and I've heard it can benefit LD patients to also eat casein free (present in dairy products), sugar free and caffeine free. I don't know if I can do it. I've got gluten free down, could easily do casein free since I don't eat much dairy. Caffeine would be a little harder but doable. But sugar? I think I may have a sugar addiction. Whenever I've tried to cut it out, I find myself craving it. There are many reasons why it's bad, among them the fact that sugar supresses your immune system.
But knowing you should do something and actually doing it are two different stories.
Anybody want to try it with me? :-)
Not to ruin the surprise (and what a great one it is) but I am still dealing with LD. I recently started medicine for it again, and it usually makes me feel worse instead of better. Lately, I've been really tired, mentally clouded (hence, the lack of blog posts lately), zombie-like, and I usually have a headache.
Thankfully, I don't always feel this way when I'm on medicine. There's good days and bad days, but I seem to be in a bad week. And it's probably going to end in a bad weekend. I'm nervous about starting a new medicine that I've never been on before. I'm supposed to take it only on the weekends (every or every other weekend) because it's probably going to make me feel really awful. I already don't feel so great, and I'm not looking forward to feeling worse. But I'm getting ahead of myself. We'll see what happens this weekend. At least I have a lot of books from the library, a comfy bed and an understanding husband.
On another subject, I've been mentally debating if I need to alter my diet. I already eat gluten free, and I've heard it can benefit LD patients to also eat casein free (present in dairy products), sugar free and caffeine free. I don't know if I can do it. I've got gluten free down, could easily do casein free since I don't eat much dairy. Caffeine would be a little harder but doable. But sugar? I think I may have a sugar addiction. Whenever I've tried to cut it out, I find myself craving it. There are many reasons why it's bad, among them the fact that sugar supresses your immune system.
But knowing you should do something and actually doing it are two different stories.
Anybody want to try it with me? :-)
Saturday, September 3, 2011
Back in the Doctor's Office (LD Post #7)
I saw my new Lyme disease doctor in December of 2009, hopeful that he would be able to pickup where the last doctor had left off. He ran a number of different tests on me, but we did not recheck for the Lyme disease and co-infections at that point to save money. We already knew that I had them. One of the most reliable labs to use for testing also does not take insurance (IGeneX), and testing for the Lyme disease and all the co-infections usually costs over $1000.
It took a little bit of time for all the results to get back to the doctor, and I went back to the office for a follow-up visit in February of 2010. We learned two very important things at that visit, and they'll both take a little bit of explaining.
New thing #1: CD-57 test
This link will give you more details if you're interested, but here's the Wendi summary.
I'm sure almost all of you are familiar with a T-cell count. It's the test they do on people that have the HIV infection, and it's a marker they check to see how active the infection is. A low T-cell count is a bad thing because it means the infection is active. In the same way, the CD-57 test checks a subset of specific cells that have been found to react to the Lyme infection. The lower the count, the more active the infection is.
Here's the numbers they use at LabCorp (best lab for this test):
It was a little surprising to have a result that low, but still I hadn't been feeling that great so it wasn't a huge shock. I started back on the antibiotics to treat the Lyme disease.
New thing #2: Gluten
One of the trendy things these days is to be "gluten-free". Ah, if only I was trendy. Flashback to my NJ doctor. Towards the end of the time I was seeing her, I had a borderline test result on a gluten allergy. She recommended that I cut back or cut gluten out of my diet. At that point I had already cut dairy out of my diet - and that had been very difficult for me. There were so many things that I had loved eating that had dairy - yogurt, chocolate milk, cheese.. But pain is a good motivator, and I had managed to cut it out of my diet. But gluten too? Do you know what gluten is in? EVERYTHING. Well, it seems that way when you first start out.
What is gluten? Gluten is a protein found in wheat, rye and barley. It's the thing that gives elasticity and often chewiness to whatever it's in (think bread, cakes, cookies). And if any of you have ever eaten gluten-free products and found them lacking - well, it's probably because it's missing that certain something that gluten provides.
Unfortunately, gluten is also the hardest thing for the human body to digest. Well, other than coins and legos and such.
And this post is reaching the point of already being too long already and I have so much more to say about gluten.
It took a little bit of time for all the results to get back to the doctor, and I went back to the office for a follow-up visit in February of 2010. We learned two very important things at that visit, and they'll both take a little bit of explaining.
New thing #1: CD-57 test
This link will give you more details if you're interested, but here's the Wendi summary.
I'm sure almost all of you are familiar with a T-cell count. It's the test they do on people that have the HIV infection, and it's a marker they check to see how active the infection is. A low T-cell count is a bad thing because it means the infection is active. In the same way, the CD-57 test checks a subset of specific cells that have been found to react to the Lyme infection. The lower the count, the more active the infection is.
Here's the numbers they use at LabCorp (best lab for this test):
- 200 or higher normal, no Lyme disease
- 60-100 Have Lyme disease
- 0-60 seen in chronic Lyme disease
- 20 or less severe illness
It was a little surprising to have a result that low, but still I hadn't been feeling that great so it wasn't a huge shock. I started back on the antibiotics to treat the Lyme disease.
New thing #2: Gluten
One of the trendy things these days is to be "gluten-free". Ah, if only I was trendy. Flashback to my NJ doctor. Towards the end of the time I was seeing her, I had a borderline test result on a gluten allergy. She recommended that I cut back or cut gluten out of my diet. At that point I had already cut dairy out of my diet - and that had been very difficult for me. There were so many things that I had loved eating that had dairy - yogurt, chocolate milk, cheese.. But pain is a good motivator, and I had managed to cut it out of my diet. But gluten too? Do you know what gluten is in? EVERYTHING. Well, it seems that way when you first start out.
What is gluten? Gluten is a protein found in wheat, rye and barley. It's the thing that gives elasticity and often chewiness to whatever it's in (think bread, cakes, cookies). And if any of you have ever eaten gluten-free products and found them lacking - well, it's probably because it's missing that certain something that gluten provides.
Unfortunately, gluten is also the hardest thing for the human body to digest. Well, other than coins and legos and such.
And this post is reaching the point of already being too long already and I have so much more to say about gluten.
Friday, September 2, 2011
Living with Lyme Disease (LD Post #6)
So here we are at the beginning of 2008. I had just moved back to Florida and started dating Daniel. It had been a long, long time since I had dated anyone.
I was still taking a lot of pills. The amount varied, depending what I was on at the time. But between all the prescriptions and the nutritional supplements, I took something like 15-30 pills a day. Thankfully, I don't have a problem with taking pills. But I have definitely grown to not liking it. Maybe because it's a reminder that I need them?
I was still dealing with a lot of fatigue and weakness. I had always been a very active and strong (working in the greenhouses forces that one on you) and my body lost a lot of strength during my years of illness. It had a lot of damage to recover from.
I was going back to see my doctor in NJ every 3-4 months, and she continued to monitor my progress and switch up my medicines a bit. I think the last time I saw her was in the spring of 2009. I had kind of plateaued in my treatment. I was still taking pills and spending lots of money (especially if you consider the costs of traveling to NJ from FL) but not seeing much more noticeable improvement.
I stopped taking most of my medicine. I was also tired of taking antibiotics. I think by this point I had been on them for 1 1/2 years. Lyme disease isn't good for your body, but neither are a lot of antibiotics! I didn't notice a big change in how I was feeling when I stopped taking everything.
And then I got sick. It was probably in November of 2009 and I had a bad cold. More often than not, colds for me turn into sinus infections and I have to go on antibiotics for them. I had yet to find a GP here in Florida that I liked, so I went to a walk-in clinic. This was also when the swine flu was going around, and I wanted to make sure I didn't have that, being the immunocompromised individual that I am.
Thankfully, no swine flu. But they put me on antibiotics and prednisone (a steroid), which if you remember from a previous post, it's a bad thing for people with Lyme disease. But I didn't know that at the time. It's how I found out. Almost overnight, my joint pain returned along with some other symptoms. I stopped taking the prednisone after a little bit of research and started looking for a Lyme-literate doctor here in Florida, because I was afraid I had just given the Lyme disease a foothold.
I don't remember how I found my current doctor - it might have been on from some people I talked to online who had Lyme disease. And if you click on this link, you can read a little bit about why it's hard to find a good Lyme doctor.
I met with my new doctor and we spent a lot of time going over my complicated history (seems to be the mark of a good doctor - they spend time listening to you before making snap judgments). As for the money side of things, he was another doctor that did not take insurance. So we just focused on the important tests to save some money. Why did I have to get a politically incorrect disease?
So we ran the essential tests to figure out what was going on with my health. And we found out some interesting things!
I was still taking a lot of pills. The amount varied, depending what I was on at the time. But between all the prescriptions and the nutritional supplements, I took something like 15-30 pills a day. Thankfully, I don't have a problem with taking pills. But I have definitely grown to not liking it. Maybe because it's a reminder that I need them?
I was still dealing with a lot of fatigue and weakness. I had always been a very active and strong (working in the greenhouses forces that one on you) and my body lost a lot of strength during my years of illness. It had a lot of damage to recover from.
I was going back to see my doctor in NJ every 3-4 months, and she continued to monitor my progress and switch up my medicines a bit. I think the last time I saw her was in the spring of 2009. I had kind of plateaued in my treatment. I was still taking pills and spending lots of money (especially if you consider the costs of traveling to NJ from FL) but not seeing much more noticeable improvement.
I stopped taking most of my medicine. I was also tired of taking antibiotics. I think by this point I had been on them for 1 1/2 years. Lyme disease isn't good for your body, but neither are a lot of antibiotics! I didn't notice a big change in how I was feeling when I stopped taking everything.
And then I got sick. It was probably in November of 2009 and I had a bad cold. More often than not, colds for me turn into sinus infections and I have to go on antibiotics for them. I had yet to find a GP here in Florida that I liked, so I went to a walk-in clinic. This was also when the swine flu was going around, and I wanted to make sure I didn't have that, being the immunocompromised individual that I am.
Thankfully, no swine flu. But they put me on antibiotics and prednisone (a steroid), which if you remember from a previous post, it's a bad thing for people with Lyme disease. But I didn't know that at the time. It's how I found out. Almost overnight, my joint pain returned along with some other symptoms. I stopped taking the prednisone after a little bit of research and started looking for a Lyme-literate doctor here in Florida, because I was afraid I had just given the Lyme disease a foothold.
I don't remember how I found my current doctor - it might have been on from some people I talked to online who had Lyme disease. And if you click on this link, you can read a little bit about why it's hard to find a good Lyme doctor.
I met with my new doctor and we spent a lot of time going over my complicated history (seems to be the mark of a good doctor - they spend time listening to you before making snap judgments). As for the money side of things, he was another doctor that did not take insurance. So we just focused on the important tests to save some money. Why did I have to get a politically incorrect disease?
So we ran the essential tests to figure out what was going on with my health. And we found out some interesting things!
Thursday, September 1, 2011
On the Road to Recovery... and Marriage!
If I remember correctly, I lived in NJ for almost all of 2007. I made 4-6 trips back to Florida during that year because I still had work responsibilities I was overseeing in Florida that required me to check in on things.
During the times I was in Florida, I started visiting a church that two of my dear friends also attended. I don't know that I would have gone there on my own if they hadn't been there - it was a 40-45 minute drive from where I was currently living. But I was desperately feeling the need to connect with friends, and the long battle with illness had left my energy depleted.
Have you ever considered the amount of energy it takes to develop a friendship? And to maintain it? I found a lot of my friendships slipping to the wayside during my illness because I lacked the energy to spend on them. And I was dealing with serious depression and an inability to focus, coupled with headaches... well, it didn't make me the greatest person to be around and I didn't really want to be around people too much because it sapped me of my very limited energy. Compound that over 5 years and... well, you get the picture.
Back to the story. I was starting to feel better and hope had been restored to me (which did wonders for my mental well-being). I figured I would be moving back to Florida at some point, when I no longer had to see my doctor as frequently. And I was hoping to find a church that preached unashamedly from the Bible.
I was visiting the church in Florida sometime in September of 2007 (I had been diagnosed at the end of July and had started to see noticeable improvements in my health by this point). After the service, I was talking with some friends and was introduced to Daniel by his brother (who I met at VSO camp that summer - I'll have to write a whole other series of posts on camp!). I don't even remember what we talked about at that point.
I do remember talking with a few friends who had inquired about my health, and I told them about my diagnosis and how I was finally starting to feel better, that I felt almost like I had been in a mental coma over the past years and that I was waking up from this cloud that had enveloped me. I remember being so enthusiastic, so excited that it seemed like I was finally getting my life back - the life that I had given up on ever having again.
Daniel was there as I was talking, even though he doesn't remember the conversation now. I ended up going out for lunch with him, his family and a few other friends.
I flew back to NJ that week and... Daniel and I became friends on Facebook. Such a huge deal, I know :-) It kept us in touch, and we talked about playing racquetball when I was back in Florida again. I had played a little tennis when I was 14. Not well. Never racquetball.
But when I was back in Florida in November, we played racquetball along with his brother, Jacob, and our friend Aaron. Those of you who don't know Daniel should know that he is an extremely talented athlete and he works in recreation. He showed me the basics of racquetball, but it didn't help much. I managed to unintentionally hit all 3 of them in the head with the ball during the course of the game(s). Thankfully, "good racquetball player" wasn't on Daniel's list of requirements for a wife.
So we hung out a few times after that and we started officially dating before I went back to NJ for the December poinsettia rush. We spent a lot of time on the phone while I was up there, getting to know each other, and I moved back to Florida right before Christmas.
Well, that's enough for now. Not much about my battle with Lyme disease, but way more enjoyable to reminisce about! We'll get back to that in the next post.
Thanks for all your comments and encouragement!
During the times I was in Florida, I started visiting a church that two of my dear friends also attended. I don't know that I would have gone there on my own if they hadn't been there - it was a 40-45 minute drive from where I was currently living. But I was desperately feeling the need to connect with friends, and the long battle with illness had left my energy depleted.
Have you ever considered the amount of energy it takes to develop a friendship? And to maintain it? I found a lot of my friendships slipping to the wayside during my illness because I lacked the energy to spend on them. And I was dealing with serious depression and an inability to focus, coupled with headaches... well, it didn't make me the greatest person to be around and I didn't really want to be around people too much because it sapped me of my very limited energy. Compound that over 5 years and... well, you get the picture.
Back to the story. I was starting to feel better and hope had been restored to me (which did wonders for my mental well-being). I figured I would be moving back to Florida at some point, when I no longer had to see my doctor as frequently. And I was hoping to find a church that preached unashamedly from the Bible.
I was visiting the church in Florida sometime in September of 2007 (I had been diagnosed at the end of July and had started to see noticeable improvements in my health by this point). After the service, I was talking with some friends and was introduced to Daniel by his brother (who I met at VSO camp that summer - I'll have to write a whole other series of posts on camp!). I don't even remember what we talked about at that point.
I do remember talking with a few friends who had inquired about my health, and I told them about my diagnosis and how I was finally starting to feel better, that I felt almost like I had been in a mental coma over the past years and that I was waking up from this cloud that had enveloped me. I remember being so enthusiastic, so excited that it seemed like I was finally getting my life back - the life that I had given up on ever having again.
Daniel was there as I was talking, even though he doesn't remember the conversation now. I ended up going out for lunch with him, his family and a few other friends.
I flew back to NJ that week and... Daniel and I became friends on Facebook. Such a huge deal, I know :-) It kept us in touch, and we talked about playing racquetball when I was back in Florida again. I had played a little tennis when I was 14. Not well. Never racquetball.
But when I was back in Florida in November, we played racquetball along with his brother, Jacob, and our friend Aaron. Those of you who don't know Daniel should know that he is an extremely talented athlete and he works in recreation. He showed me the basics of racquetball, but it didn't help much. I managed to unintentionally hit all 3 of them in the head with the ball during the course of the game(s). Thankfully, "good racquetball player" wasn't on Daniel's list of requirements for a wife.
So we hung out a few times after that and we started officially dating before I went back to NJ for the December poinsettia rush. We spent a lot of time on the phone while I was up there, getting to know each other, and I moved back to Florida right before Christmas.
Well, that's enough for now. Not much about my battle with Lyme disease, but way more enjoyable to reminisce about! We'll get back to that in the next post.
Thanks for all your comments and encouragement!
Wednesday, August 31, 2011
Answers Explained (LD Post #5)
What in the world had happened? Why were so many things wrong with me? I had Lyme disease that went untreated for many years. I also had co-infections (often when people are bit by a bug infected with Lyme disease, that bug is also carrying other infections) that I may have had for just as long. Who knows? Maybe I had been bit multiple times? Whatever the case, my immune system was worn out from trying to fight off the Lyme disease and the co-infections. It was so depleted, it was unable to fight off the viruses that I'm sure my body in the past had sufficient antibodies present to keep in check. A tapeworm decided I would make a good host because of my barely functioning immune system. I started developing nutrient deficiencies and food allergies. All of this happened because it was too much for my body to handle.
We started treatment right away. I went on antibiotics for the UTI and she started me on nutritional supplements. I took something to kill the tapeworm. She told me to cut dairy out of my diet completely - and that I would probably notice the joint pain in my hips go away (a very strange symptom of food allergies in my opinion). She gave me a symptom chart to fill out everyday, to track what was happening with my body.
Oh, and I forgot to mention - she was another doctor that did not take insurance. There is a big, strange cloud surrounding Lyme disease that scares the CDC, health insurance companies, most doctors... and many of them deny the seriousness of Lyme disease, if they are willing to even diagnose it to begin with. It's absolutely baffling to me. Maybe I'll post more on that another time. Anyway, because of this, most doctors that know much about Lyme disease don't take insurance because (I think) they can't treat the disease when their hands are tied by insurance companies who tell them what they are allowed to give to patients and how long they can treat them for. The commonly held opinion is that 1 month of antibiotics will take care of Lyme disease, and that chronic Lyme disease doesn't exist (in other words, 1 month and you're cured for good). There are many people that are living truth of the absurdity of this claim. (If you're interested in knowing more about others' opinions on this matter, there's a great documentary out called Under Our Skin and it's available on Netflix Instant Queue). But enough about that for now.
I think in the beginning I was seeing the doctor every 2-4 weeks. I started on antibiotics for the Ehrlichiosis infection. We didn't start treating the Lyme disease right away, because you have to get the co-infections out of the way before you can effectively treat the Lyme disease. We started with the Ehrlichiosis (out of our 3 choices of co-infections) because my test results were very high - the highest she had seen in a very long time. And she suspected it had been causing my headaches.
I took pills and pills and more pills. I cut dairy out of my diet and noticed a drastic improvement in my joint pain.
She sent me to a hospital in Manhattan to have a brain CT scan and a brain Spect Scan, to check to see if the Lyme disease had crossed the blood-brain barrier and entered my neurological system. Thankfully, it had not.
She retested my ANA (the test commonly used for lupus) and this time it was positive (these tests can fluctuate). For all intents and purposes, I did also have lupus. But her opinion (and I've heard this elsewhere) is that it was Lyme-induced lupus. Usually, lupus is treated first and foremost with steroids to suppress your immune system because your immune system is overactive and attacking your own body. But one of the worst things (in my own opinion) for a Lyme patient is to take steroids because your immune system is struggling to keep up as it is. You need to support it rather than suppress it (remember back in one of my earlier posts, when the first rheumatologist told me he could put me on a "safe" medicine to help me feel better? I'm pretty sure it was a steroid, and that could have severely worsened my infection). So we decided to continue treating for the co-infections and Lyme and to just ignore the lupus. I wasn't noticing any new/abnormal symptoms different than what I had already been dealing with anyway.
At some point, we tested my Ferritin level and that was low. Ferritin is basically your body's storage of iron. I started on Iron supplements.
I took probiotics to try to help my body replenish the good bacteria that were being killed by the antibiotics I took every day.
We retested levels and started seeing improvements. My co-infections were decreasing. The viruses were decreasing. My nutrient deficiencies were improving. The tapeworm was gone. My headaches were greatly diminished along with my joint pain. My energy level was better. By this point, we're somewhere around the end of 2008/beginning of 2009.
But I've skipped part of the story - of when I moved back to Florida and met my husband-to-be. Until the next time...
We started treatment right away. I went on antibiotics for the UTI and she started me on nutritional supplements. I took something to kill the tapeworm. She told me to cut dairy out of my diet completely - and that I would probably notice the joint pain in my hips go away (a very strange symptom of food allergies in my opinion). She gave me a symptom chart to fill out everyday, to track what was happening with my body.
Oh, and I forgot to mention - she was another doctor that did not take insurance. There is a big, strange cloud surrounding Lyme disease that scares the CDC, health insurance companies, most doctors... and many of them deny the seriousness of Lyme disease, if they are willing to even diagnose it to begin with. It's absolutely baffling to me. Maybe I'll post more on that another time. Anyway, because of this, most doctors that know much about Lyme disease don't take insurance because (I think) they can't treat the disease when their hands are tied by insurance companies who tell them what they are allowed to give to patients and how long they can treat them for. The commonly held opinion is that 1 month of antibiotics will take care of Lyme disease, and that chronic Lyme disease doesn't exist (in other words, 1 month and you're cured for good). There are many people that are living truth of the absurdity of this claim. (If you're interested in knowing more about others' opinions on this matter, there's a great documentary out called Under Our Skin and it's available on Netflix Instant Queue). But enough about that for now.
I think in the beginning I was seeing the doctor every 2-4 weeks. I started on antibiotics for the Ehrlichiosis infection. We didn't start treating the Lyme disease right away, because you have to get the co-infections out of the way before you can effectively treat the Lyme disease. We started with the Ehrlichiosis (out of our 3 choices of co-infections) because my test results were very high - the highest she had seen in a very long time. And she suspected it had been causing my headaches.
I took pills and pills and more pills. I cut dairy out of my diet and noticed a drastic improvement in my joint pain.
She sent me to a hospital in Manhattan to have a brain CT scan and a brain Spect Scan, to check to see if the Lyme disease had crossed the blood-brain barrier and entered my neurological system. Thankfully, it had not.
She retested my ANA (the test commonly used for lupus) and this time it was positive (these tests can fluctuate). For all intents and purposes, I did also have lupus. But her opinion (and I've heard this elsewhere) is that it was Lyme-induced lupus. Usually, lupus is treated first and foremost with steroids to suppress your immune system because your immune system is overactive and attacking your own body. But one of the worst things (in my own opinion) for a Lyme patient is to take steroids because your immune system is struggling to keep up as it is. You need to support it rather than suppress it (remember back in one of my earlier posts, when the first rheumatologist told me he could put me on a "safe" medicine to help me feel better? I'm pretty sure it was a steroid, and that could have severely worsened my infection). So we decided to continue treating for the co-infections and Lyme and to just ignore the lupus. I wasn't noticing any new/abnormal symptoms different than what I had already been dealing with anyway.
At some point, we tested my Ferritin level and that was low. Ferritin is basically your body's storage of iron. I started on Iron supplements.
I took probiotics to try to help my body replenish the good bacteria that were being killed by the antibiotics I took every day.
We retested levels and started seeing improvements. My co-infections were decreasing. The viruses were decreasing. My nutrient deficiencies were improving. The tapeworm was gone. My headaches were greatly diminished along with my joint pain. My energy level was better. By this point, we're somewhere around the end of 2008/beginning of 2009.
But I've skipped part of the story - of when I moved back to Florida and met my husband-to-be. Until the next time...
Finally some answers! (LD Post #4)
Where were we? July of 2007 in NJ
I was about ready to give up looking for answers to what was wrong with me, but by the grace of God, I decided to give one more doctor a chance (I'm sure there would have been more doctors after her at some point - but since she found the answers, she's the "last" one I went to :-)
Based off of some old notes, I'll attempt to make a list of the symptoms I had been experiencing up to that point.
I made an appointment with the doctor. She mailed me a packet of papers (10+ pages) to fill out and bring to my first appointment. It was extremely detailed, and I did my best to answer the questions accurately which can be difficult since many symptoms come and go... and the memory loss makes it difficult to remember!
I can't remember how long I waited to see her - she was usually backed up since she was the only doctor and she took as much time with each patient as was necessary. Anyway, we reviewed the papers I filled out - page by page, line by line - and she was fairly convinced I had Lyme disease just based on my symptoms. She drew many vials of blood and sent me home with a kit to do a stool test to mail to a lab. Yuck.
I returned 3 weeks later or so to go over the results. Here is what she found, what 15+ medical professionals were not able to figure out.
But I shall end this post here. I have already typed an additional 7 paragraphs expounding on the above information - and I wouldn't want to overwhelm you with too much information at one time. And the story continues...
I was about ready to give up looking for answers to what was wrong with me, but by the grace of God, I decided to give one more doctor a chance (I'm sure there would have been more doctors after her at some point - but since she found the answers, she's the "last" one I went to :-)
Based off of some old notes, I'll attempt to make a list of the symptoms I had been experiencing up to that point.
- Headaches/Migraines
- Extreme Fatigue
- Depression
- Dizziness
- Loss of Appetite
- IBS
- Muscle Pain
- Joint pain, especially bad in my hips
- Head Cloud/Brain Fog
- Inability to focus/think/concentrate
- Anger/Irritability
- Irregular Periods
- Skin problems
- Shaky/unsteady
- Weakness
- Fuzzy Vision
- Weight Gain & Loss
- Hair Loss
- TMJ
- Cold extremities/bad circulation
- Swollen eyelids
- Memory Loss
I made an appointment with the doctor. She mailed me a packet of papers (10+ pages) to fill out and bring to my first appointment. It was extremely detailed, and I did my best to answer the questions accurately which can be difficult since many symptoms come and go... and the memory loss makes it difficult to remember!
I can't remember how long I waited to see her - she was usually backed up since she was the only doctor and she took as much time with each patient as was necessary. Anyway, we reviewed the papers I filled out - page by page, line by line - and she was fairly convinced I had Lyme disease just based on my symptoms. She drew many vials of blood and sent me home with a kit to do a stool test to mail to a lab. Yuck.
I returned 3 weeks later or so to go over the results. Here is what she found, what 15+ medical professionals were not able to figure out.
- Lyme disease
- Babesia (co-infection - I'll explain that more later)
- Ehrlichiosis (another co-infection)
- Bartonella (and another co-infection)
- Low potassium level
- Low vitamin D level
- Asymptomatic urinary tract infection
- High levels of a few different viruses, including the Epstein Barr Virus - now up to 2440
- Tapeworm
- Dairy allergy
- Extremely depleted immune system - this one takes some explaining
But I shall end this post here. I have already typed an additional 7 paragraphs expounding on the above information - and I wouldn't want to overwhelm you with too much information at one time. And the story continues...
Tuesday, August 30, 2011
My Last Resort (LD Post #3)
I really had tried to consider all of the different possibilities of what was wrong with me. I spent a lot of time researching my symptoms, trying to figure out what the problem was. I considered allergies, black mold, lupus, anemia, fibromyalgia, chronic fatigue, hypoglycemia, mad cow disease, pesticide exposure... and so on. I would bring my theories to my current doctor and they would run tests to see if that was the problem. But answers kept evading me and my symptoms continued to worsen.
I had been going back to NJ fairly regularly to work in the greenhouses (the family business) during busy times. It seemed that my symptoms weren't so bad when I was up there, and so at the end of 2006 I decided to move back to NJ. I was only getting sicker and sicker in Florida with no end in sight. A favorite quote of mine is from Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." So I decided to make a change and hoped for something different.
I moved in with my sister (she might have been a big reason why I felt better in NJ - sisters are good for the body & soul). I started out by seeing a Rheumatologist in NJ, to revisit the possibility of lupus, but the blood work was negative. Then I saw another doctor (a general practitioner - GP) in NJ, highly recommended by a few people. He referred me to an infectious disease doctor. I saw him, explained my medical history and he did an exam and sent my blood away for testing. Unfortunately, he did not take any insurance so this was an expensive visit. I do also remember having my worst ever experience with a phlebotomist (the person who draws your blood). And believe me, I know a thing or two about how blood should be drawn. I had been poked and prodded and bled so many times, I knew it wasn't normal for the tech to put the needle into my arm and then wiggle it around until she hit the vein she was trying to find. Ugh.
Back to the infectious disease doctor... I saw him again to go over the results of the blood work. Honestly, I don't even remember this visit. I just know that I saw him 2 or 3 times, but he had no answers for me either.
I continued to see the GP that sent me to see the infectious disease doctor. He tested me for the Epstein-Barr Virus (similar to mono, often associated with chronic fatigue) and my levels were crazy high (that's in strictest medical terms). In all seriousness, when they test you for the virus, there is a certain number range they use. If it's below 100, it's considered a negative result. 100-120 is equivocal. Greater than 120 is considered positive. My result was 1884. Crazy high.
He started me on B12 shots. There is not a straightforward treatment for viruses, but he said B12 shots have been known to help people with chronic fatigue. I needed the shots every week so he showed me how to do it myself and wrote me a prescription for the supplies. It wasn't bad, and thankfully I've never had a fear of needles or blood or most things medical.
Again, I don't remember exactly what happened next. We went into our busy spring season at work, and that probably kept me distracted. I was popping Motrin on a regular basis so I could function. Without it, the joint pain was almost crippling.
Skipping ahead to July of 2007... I never used to hate going to the doctor, but by this point I had developed a strong distaste for it. I had spent countless hours in doctors' offices, to no avail. It felt like a waste of time. I was tired of being patronized and not listened to. And even the doctors that did listen to me had no solid answers. I reached the point of accepting the diagnosis of chronic fatigue and fibromyalgia. After fighting it for years, I was ready to accept that this was my life now. Fatigue and pain and headaches and depression were there to stay.
My paths crossed with a woman I had known most of my life. I shared a bit of the reasons why I was back in NJ with her, and she told me that she, her husband and her son all had Lyme disease and that I should see their doctor. She mentioned another family that I knew that also used this doctor. I thanked her and took the doctor's information, still undecided if it was worth another doctor visit. But let's save that story for the next post.
FYI, I don't remember many of the medical details but thanks to my handy dandy folder, I can fill many of them in. What folder is this, you ask? It's a folder I started keeping when I realized I wasn't getting any answers and I needed to start trying to figure things out myself. It has most of the blood work I've had done since that first positive ANA test, a list of the symptoms I was experiencing, along with other important medical info. It's about 2 inches thick. I spent a lot of time going over those papers, learning how to read blood tests and what all those little itemized lines were checking for specifically. I feel as though I could slide into a job in the medical field without much extra training because of all of the research I've done on my own (okay, realistically so not true). But it feels that way.
Until the next time, friends...
I had been going back to NJ fairly regularly to work in the greenhouses (the family business) during busy times. It seemed that my symptoms weren't so bad when I was up there, and so at the end of 2006 I decided to move back to NJ. I was only getting sicker and sicker in Florida with no end in sight. A favorite quote of mine is from Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." So I decided to make a change and hoped for something different.
I moved in with my sister (she might have been a big reason why I felt better in NJ - sisters are good for the body & soul). I started out by seeing a Rheumatologist in NJ, to revisit the possibility of lupus, but the blood work was negative. Then I saw another doctor (a general practitioner - GP) in NJ, highly recommended by a few people. He referred me to an infectious disease doctor. I saw him, explained my medical history and he did an exam and sent my blood away for testing. Unfortunately, he did not take any insurance so this was an expensive visit. I do also remember having my worst ever experience with a phlebotomist (the person who draws your blood). And believe me, I know a thing or two about how blood should be drawn. I had been poked and prodded and bled so many times, I knew it wasn't normal for the tech to put the needle into my arm and then wiggle it around until she hit the vein she was trying to find. Ugh.
Back to the infectious disease doctor... I saw him again to go over the results of the blood work. Honestly, I don't even remember this visit. I just know that I saw him 2 or 3 times, but he had no answers for me either.
I continued to see the GP that sent me to see the infectious disease doctor. He tested me for the Epstein-Barr Virus (similar to mono, often associated with chronic fatigue) and my levels were crazy high (that's in strictest medical terms). In all seriousness, when they test you for the virus, there is a certain number range they use. If it's below 100, it's considered a negative result. 100-120 is equivocal. Greater than 120 is considered positive. My result was 1884. Crazy high.
He started me on B12 shots. There is not a straightforward treatment for viruses, but he said B12 shots have been known to help people with chronic fatigue. I needed the shots every week so he showed me how to do it myself and wrote me a prescription for the supplies. It wasn't bad, and thankfully I've never had a fear of needles or blood or most things medical.
Again, I don't remember exactly what happened next. We went into our busy spring season at work, and that probably kept me distracted. I was popping Motrin on a regular basis so I could function. Without it, the joint pain was almost crippling.
Skipping ahead to July of 2007... I never used to hate going to the doctor, but by this point I had developed a strong distaste for it. I had spent countless hours in doctors' offices, to no avail. It felt like a waste of time. I was tired of being patronized and not listened to. And even the doctors that did listen to me had no solid answers. I reached the point of accepting the diagnosis of chronic fatigue and fibromyalgia. After fighting it for years, I was ready to accept that this was my life now. Fatigue and pain and headaches and depression were there to stay.
My paths crossed with a woman I had known most of my life. I shared a bit of the reasons why I was back in NJ with her, and she told me that she, her husband and her son all had Lyme disease and that I should see their doctor. She mentioned another family that I knew that also used this doctor. I thanked her and took the doctor's information, still undecided if it was worth another doctor visit. But let's save that story for the next post.
FYI, I don't remember many of the medical details but thanks to my handy dandy folder, I can fill many of them in. What folder is this, you ask? It's a folder I started keeping when I realized I wasn't getting any answers and I needed to start trying to figure things out myself. It has most of the blood work I've had done since that first positive ANA test, a list of the symptoms I was experiencing, along with other important medical info. It's about 2 inches thick. I spent a lot of time going over those papers, learning how to read blood tests and what all those little itemized lines were checking for specifically. I feel as though I could slide into a job in the medical field without much extra training because of all of the research I've done on my own (okay, realistically so not true). But it feels that way.
Until the next time, friends...
Monday, August 29, 2011
And the saga continues... (LD Post #2)
If you haven't read my last post yet, you might want to. Otherwise you'll be a little lost...
So my daily migraines had started, and this is where I remember a drastic change to my quality of life. I'd always been a very involved and active person. I was working full time, taking college classes at night, playing in the church orchestra, helping out with the youth group and leading the youth band, playing in another band, in a Bible study, spending time with friends... but I gradually started paring down my schedule. I didn't have the energy to participate in everything, so I had to start picking and choosing. When the migraines started, I really cut out my involvement on a number of things because I felt as though I was completely unreliable. I became scared to drive, because I didn't trust myself. The headaches clouded my thinking, my eyesight was affected, my ability to focus and pay attention was drastically depleted.
I withdrew. I spent a lot of time sleeping, completely exhausted. I was still working with the family business, but my hours were very low. I remember a time when I was happy if I could put in 5 hours of work in a week. I felt like a hypochondriac, like a failure. I figured I must be doing something wrong, that if I tried harder I could do all of these things that used to be so easy but now seemed insurmountable to me. Because of course, there was nothing wrong with me. I had been checked out by multiple doctors, been on different medicines, been told it was all in my head and that I just needed to go on antidepressants (which I tried and it didn't help).
At some point, I started developing severe joint pain in my hips and legs. Some days it hurt so bad I could barely walk. I felt like an 80 year old woman when I climbed the stairs at my parents' house - one, slow painful step at a time. And my symptoms continued to worsen.
Thankfully, I would have a reprieve in my symptoms here in there. I would feel terrible for a while, and then start to feel better. I would be so hopeful that I was better, that God had finally seen fit to end my years of suffering... and I would crash again into misery. This happened countless times. I finally stopped hoping on my good days, because the discouragement when my symptoms returned in force was too painful.
"Hope deferred makes the heart sick," Proverbs 13:12a
Back to the medical side... I had an MRI done on my head to make sure there wasn't a tumor or something causing my daily migraines. There wasn't.
By now, it was apparent that there was something wrong with me (even to the doctors) but a lack of medical proof as to what was wrong. The doctors were telling me it was fibromyalgia and chronic fatigue, which are diagnosises of exclusion. There is no specific test that can diagnose either of those illnesses. It's what they tell you you have when your symptoms fit and there is no other apparent problem.
I didn't want to accept that as my diagnosis, because then there wasn't anything I could do to get rid of it or feel better. I would just have to learn how to live with the way I was feeling.
I still suspected that I might have Lyme disease, but I was starting to get the impression that doctors in Florida were not well-versed in dealing with Lyme disease. At the end of 2006, I decided to move back to New Jersey in hopes of finding a doctor that might have some answers.
Inexplicably, my symptoms also seemed to be less severe when I was up North. I didn't know if there was just something in Florida that completely disagreed with me - allergies, molds, the weather? So I moved back to NJ, in search of better health.
...to be continued...
So my daily migraines had started, and this is where I remember a drastic change to my quality of life. I'd always been a very involved and active person. I was working full time, taking college classes at night, playing in the church orchestra, helping out with the youth group and leading the youth band, playing in another band, in a Bible study, spending time with friends... but I gradually started paring down my schedule. I didn't have the energy to participate in everything, so I had to start picking and choosing. When the migraines started, I really cut out my involvement on a number of things because I felt as though I was completely unreliable. I became scared to drive, because I didn't trust myself. The headaches clouded my thinking, my eyesight was affected, my ability to focus and pay attention was drastically depleted.
I withdrew. I spent a lot of time sleeping, completely exhausted. I was still working with the family business, but my hours were very low. I remember a time when I was happy if I could put in 5 hours of work in a week. I felt like a hypochondriac, like a failure. I figured I must be doing something wrong, that if I tried harder I could do all of these things that used to be so easy but now seemed insurmountable to me. Because of course, there was nothing wrong with me. I had been checked out by multiple doctors, been on different medicines, been told it was all in my head and that I just needed to go on antidepressants (which I tried and it didn't help).
At some point, I started developing severe joint pain in my hips and legs. Some days it hurt so bad I could barely walk. I felt like an 80 year old woman when I climbed the stairs at my parents' house - one, slow painful step at a time. And my symptoms continued to worsen.
Thankfully, I would have a reprieve in my symptoms here in there. I would feel terrible for a while, and then start to feel better. I would be so hopeful that I was better, that God had finally seen fit to end my years of suffering... and I would crash again into misery. This happened countless times. I finally stopped hoping on my good days, because the discouragement when my symptoms returned in force was too painful.
"Hope deferred makes the heart sick," Proverbs 13:12a
Back to the medical side... I had an MRI done on my head to make sure there wasn't a tumor or something causing my daily migraines. There wasn't.
By now, it was apparent that there was something wrong with me (even to the doctors) but a lack of medical proof as to what was wrong. The doctors were telling me it was fibromyalgia and chronic fatigue, which are diagnosises of exclusion. There is no specific test that can diagnose either of those illnesses. It's what they tell you you have when your symptoms fit and there is no other apparent problem.
I didn't want to accept that as my diagnosis, because then there wasn't anything I could do to get rid of it or feel better. I would just have to learn how to live with the way I was feeling.
I still suspected that I might have Lyme disease, but I was starting to get the impression that doctors in Florida were not well-versed in dealing with Lyme disease. At the end of 2006, I decided to move back to New Jersey in hopes of finding a doctor that might have some answers.
Inexplicably, my symptoms also seemed to be less severe when I was up North. I didn't know if there was just something in Florida that completely disagreed with me - allergies, molds, the weather? So I moved back to NJ, in search of better health.
...to be continued...
How it all began (LD Post #1)
So when did I contract Lyme disease? I have no idea. I lived in New Jersey and spent a lot of time in upstate NY and in Massachusetts. I could have gotten it at any point. But I never noticed the "tell-tale" target shaped rash. They say 50% of people who have been infected don't notice or get the rash.
I move to Florida in the fall of 2001. September 9th, 2001 to be exact.
I had a good first year in Florida. My sister and I traveled to Holland, England, Scotland and Ireland in the summer of 2002 for an amazing whirlwind one week trip. I had a hard time keeping up with my speed-walking sister and was fairly tired, but didn't think anything of it.
When we got home, the fatigue continued... and steadily got worse. I saw a doctor and had some blood work done, and the test came back with a positive ANA. In laymen's terms, it was a good indicator that I had lupus and the doctor sent me to a rheumatologist (a specialist that treats lupus). He told me I didn't have enough symptoms of lupus to diagnosis me, but told me he could put me on medicine that might make me feel better. I was opposed to taking meds without knowing what was wrong with me, so I declined (I've found out down the road how good of a decision that was, thanks be to God!).
This is where my history gets a little bit muddled. I chalk it up to the Lyme disease and fatigue. Unfortunately, there are huge chunks of my life that I really don't recall. Lyme disease can cause memory loss. I don't know how much of my lack of memory is normal and how much is because of the Lyme disease. But I guess it doesn't matter why I can't remember.
Let's see...
- I saw an herbalist for a little while and took lots and lot of pills and supplements to see if it would help. It did for a little while, but then I seemed to crash back down into fatigue again.
- I saw another doctor for a second opinion. He said I looked perfectly healthy and maybe I should go on antidepressants.
- At some point in all of this mess, I had a doctor (or 2) test me for Lyme disease because I suspected that could be the problem, but the tests came back negative (more on that subject later).
- I saw a homeopathic doctor that was recommended to me by some friends who had been successfully treated for cancer by him. It helped... for a while. It also cost a lot of money.
- I saw another doctor at some point in there. He told me I needed to exercise more and that he could put me on antidepressants if I wanted (notice a trend here?).
- I saw another doctor, recommended by a friend who had been treated for Lyme disease. He was probably the best out of the bunch. He actually listened to me. But the test for Lyme came back negative, according to the CDC standard of testing for Lyme disease.
What's the CDC standard? It's a little complicated to explain - this link is to an article on the subject. Basically, the test checks certain bands of your DNA to see if you're infected. It has to show up in 5+ bands of your DNA to be positive. I only had it present in 2 bands of DNA. So, according to them, I wasn't infected. Yeah. Sure. Thanks guys.
But this doctor still went ahead and treated me with antibiotics - better safe than sorry, he said. He put me on a one month course. I don't even remember if I felt better or not after that.
FYI, we're probably somewhere in 2006 now. We've covered about four years.
Somewhere around that time, I started having migraines which gradually became a daily occurrence. Talk about miserable. It was hard enough to function being drastically fatigued all the time (not to mention the brain fog I was experiencing because of the Lyme) but when you add daily headaches on top of it...
But that's enough for now. I know I have a hard time reading long emails/posts before my attention starts to wander. Did I stop in time? Do I still have your attention? :-)
I move to Florida in the fall of 2001. September 9th, 2001 to be exact.
I had a good first year in Florida. My sister and I traveled to Holland, England, Scotland and Ireland in the summer of 2002 for an amazing whirlwind one week trip. I had a hard time keeping up with my speed-walking sister and was fairly tired, but didn't think anything of it.
When we got home, the fatigue continued... and steadily got worse. I saw a doctor and had some blood work done, and the test came back with a positive ANA. In laymen's terms, it was a good indicator that I had lupus and the doctor sent me to a rheumatologist (a specialist that treats lupus). He told me I didn't have enough symptoms of lupus to diagnosis me, but told me he could put me on medicine that might make me feel better. I was opposed to taking meds without knowing what was wrong with me, so I declined (I've found out down the road how good of a decision that was, thanks be to God!).
This is where my history gets a little bit muddled. I chalk it up to the Lyme disease and fatigue. Unfortunately, there are huge chunks of my life that I really don't recall. Lyme disease can cause memory loss. I don't know how much of my lack of memory is normal and how much is because of the Lyme disease. But I guess it doesn't matter why I can't remember.
Let's see...
- I saw an herbalist for a little while and took lots and lot of pills and supplements to see if it would help. It did for a little while, but then I seemed to crash back down into fatigue again.
- I saw another doctor for a second opinion. He said I looked perfectly healthy and maybe I should go on antidepressants.
- At some point in all of this mess, I had a doctor (or 2) test me for Lyme disease because I suspected that could be the problem, but the tests came back negative (more on that subject later).
- I saw a homeopathic doctor that was recommended to me by some friends who had been successfully treated for cancer by him. It helped... for a while. It also cost a lot of money.
- I saw another doctor at some point in there. He told me I needed to exercise more and that he could put me on antidepressants if I wanted (notice a trend here?).
- I saw another doctor, recommended by a friend who had been treated for Lyme disease. He was probably the best out of the bunch. He actually listened to me. But the test for Lyme came back negative, according to the CDC standard of testing for Lyme disease.
What's the CDC standard? It's a little complicated to explain - this link is to an article on the subject. Basically, the test checks certain bands of your DNA to see if you're infected. It has to show up in 5+ bands of your DNA to be positive. I only had it present in 2 bands of DNA. So, according to them, I wasn't infected. Yeah. Sure. Thanks guys.
But this doctor still went ahead and treated me with antibiotics - better safe than sorry, he said. He put me on a one month course. I don't even remember if I felt better or not after that.
FYI, we're probably somewhere in 2006 now. We've covered about four years.
Somewhere around that time, I started having migraines which gradually became a daily occurrence. Talk about miserable. It was hard enough to function being drastically fatigued all the time (not to mention the brain fog I was experiencing because of the Lyme) but when you add daily headaches on top of it...
But that's enough for now. I know I have a hard time reading long emails/posts before my attention starts to wander. Did I stop in time? Do I still have your attention? :-)
Thursday, August 25, 2011
Hungry for an Elephant (Introduction)
So my sabbatical from blogging is over (not that I took one intentionally). Things got busy at work, I fell out of the habit (do 8 blog posts constitute a habit?) and then *big entrance music* the return of Lyme disease. I kind of expected this at some point, but it's completely different to expect something and to actually deal with it.
It has been something that has touched every aspect of my life - I find it's hard to write a blog post about anything else because it is the domineering thought in my head right now, that thing that if I'm not thinking about currently, it's just below the surface and I'll be thinking about it shortly. I guess that's one of the things taking multiple medicines at different intervals throughout the day can do to you.
I have a hard time writing a blog post about Lyme disease. I've had it for at least 10 years and it has dramatically affected my life. I have written at least 3 blog posts on the subject, but I can't seem to get them right - so I've yet to post one on the subject.
Writing about my struggle with Lyme disease forces me to dig deep into the emotions that I have shoved away and ignored as I've tried to deal with a long term illness. And let me tell you, there are a lot of different emotions - some closer to the surface, others buried deeply down.
The mental image that comes to mind is drilling for oil. If you hit a highly pressurized pocket of oil, it's going to come shooting out of there and you'd better hope you have some way of bringing it under control. All these emotions that I've been burying and ignoring won't go away. The pressure will just increase over time.
Every time I attempt to write about this chapter of my life, so many different emotions and memories come gushing out. I'm the kind of writer that writes what I'm thinking. I don't think ahead or plan what I'm going to write. I just start with the topic that's on my mind and see where it takes me.I process things as I write. And therein lies my problem. It's too big a subject for me to tackle that way.
Here's to eating the elephant one bite at a time.
It has been something that has touched every aspect of my life - I find it's hard to write a blog post about anything else because it is the domineering thought in my head right now, that thing that if I'm not thinking about currently, it's just below the surface and I'll be thinking about it shortly. I guess that's one of the things taking multiple medicines at different intervals throughout the day can do to you.
I have a hard time writing a blog post about Lyme disease. I've had it for at least 10 years and it has dramatically affected my life. I have written at least 3 blog posts on the subject, but I can't seem to get them right - so I've yet to post one on the subject.
Writing about my struggle with Lyme disease forces me to dig deep into the emotions that I have shoved away and ignored as I've tried to deal with a long term illness. And let me tell you, there are a lot of different emotions - some closer to the surface, others buried deeply down.
The mental image that comes to mind is drilling for oil. If you hit a highly pressurized pocket of oil, it's going to come shooting out of there and you'd better hope you have some way of bringing it under control. All these emotions that I've been burying and ignoring won't go away. The pressure will just increase over time.
Every time I attempt to write about this chapter of my life, so many different emotions and memories come gushing out. I'm the kind of writer that writes what I'm thinking. I don't think ahead or plan what I'm going to write. I just start with the topic that's on my mind and see where it takes me.I process things as I write. And therein lies my problem. It's too big a subject for me to tackle that way.
Here's to eating the elephant one bite at a time.
Friday, January 21, 2011
Fears and Worries
What a whirlwind of feelings and emotions I am dealing with.
I am to be married in a week's time from tomorrow. I have waited for this day for so long and cannot wait to be with my love everyday. I hate saying goodbye, I hate not seeing him for a day or two or three.
But I'm also afraid. I'm afraid of being faced with my own selfishness, of having someone always around to see each and everyone of my faults that are so easy to cover up when I am living alone. I'm afraid of having to face my own sin that I have constructed blinders to ignore. From what I've read and come to understand, marriage is rich with blessings... and some of those blessings are hard blessings - sanctification. It is the closest relationship on earth, and by nature it will force us to confront sin in our own lives (that is, if we hope to have a healthy marriage). Are we up to it? I pray to God we are.
These steps we are taking are tremendous steps and they are driving me to prayer more and more. I have experienced stagnation in my prayer life over the past years - largely I think due to the "control" I feel I have over my own, single life. The more I keep outside influences and people at bay, the less there is I feel that is outside my realm of control, a false sense of control albeit.
I thought my dog, Heidi was going to die yesterday. She took a new medicine and I think it caused an extremely adverse reaction. I felt that I spent most of yesterday on a death watch. Thank the Lord, she's doing better today.
I think I'm so attached to her because she was there with me through my darkest times of my health struggle. I've had her for over 8 years. She can be a nightmare at times - barking, jumping on people, making messes - but she was there with me when all I could do was sleep day after day, when I had no energy to work or go places or even prepare meals for myself. I remember one day when I was laying on the sofa watching tv and she climbed up on the other end of the sofa, laid down and started inching her way towards my head until she got right next to me and just laid there with me. This was when she was still crazy hyper (thankfully, she's calmed down a bit in her older years) and would hardly sit still for a moment, but she did to comfort me.
While I was dealing with all of that yesterday, I kept thinking to myself - how in the world will I manage, if the Lord blesses us with children, when they get sick? I felt like I could hardly function yesterday. I couldn't focus on anything, hardly got anything done, and I was so worried about Heidi. How much more difficult will it be with my kids? Talk about being driven to my knees in prayer... how do parents do it?
As it is, I worry a lot. And in comparison, it's about stupid stuff. I could have a field day when it comes to my family. Oh, to trust my burdens to the Lord...
One week, and I will be a wife. I am so excited for this new journey in life, and so scared about the new trials I am to encounter. May the Lord find me faithful.
I am to be married in a week's time from tomorrow. I have waited for this day for so long and cannot wait to be with my love everyday. I hate saying goodbye, I hate not seeing him for a day or two or three.
But I'm also afraid. I'm afraid of being faced with my own selfishness, of having someone always around to see each and everyone of my faults that are so easy to cover up when I am living alone. I'm afraid of having to face my own sin that I have constructed blinders to ignore. From what I've read and come to understand, marriage is rich with blessings... and some of those blessings are hard blessings - sanctification. It is the closest relationship on earth, and by nature it will force us to confront sin in our own lives (that is, if we hope to have a healthy marriage). Are we up to it? I pray to God we are.
These steps we are taking are tremendous steps and they are driving me to prayer more and more. I have experienced stagnation in my prayer life over the past years - largely I think due to the "control" I feel I have over my own, single life. The more I keep outside influences and people at bay, the less there is I feel that is outside my realm of control, a false sense of control albeit.
I thought my dog, Heidi was going to die yesterday. She took a new medicine and I think it caused an extremely adverse reaction. I felt that I spent most of yesterday on a death watch. Thank the Lord, she's doing better today.
I think I'm so attached to her because she was there with me through my darkest times of my health struggle. I've had her for over 8 years. She can be a nightmare at times - barking, jumping on people, making messes - but she was there with me when all I could do was sleep day after day, when I had no energy to work or go places or even prepare meals for myself. I remember one day when I was laying on the sofa watching tv and she climbed up on the other end of the sofa, laid down and started inching her way towards my head until she got right next to me and just laid there with me. This was when she was still crazy hyper (thankfully, she's calmed down a bit in her older years) and would hardly sit still for a moment, but she did to comfort me.
While I was dealing with all of that yesterday, I kept thinking to myself - how in the world will I manage, if the Lord blesses us with children, when they get sick? I felt like I could hardly function yesterday. I couldn't focus on anything, hardly got anything done, and I was so worried about Heidi. How much more difficult will it be with my kids? Talk about being driven to my knees in prayer... how do parents do it?
As it is, I worry a lot. And in comparison, it's about stupid stuff. I could have a field day when it comes to my family. Oh, to trust my burdens to the Lord...
One week, and I will be a wife. I am so excited for this new journey in life, and so scared about the new trials I am to encounter. May the Lord find me faithful.
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