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
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!
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