I feel broken. I wasn’t born broken. But somehow I have ended up feeling that way lately. When I tore my rotators cuff, my dad and I started joking that he should have bought the extended warranty on all my parts. Imagine if we all came with a guarantee against defective parts. We actually do…It is called the resurrections. Nice to know this part is not forever.
My diet seems to matter. Right now besides making sure I don’t miss any of my supplements, eating right seems to be the thing that can tip the scales as to how bad I can feel. Here is why I have such a hard time staying better. This week I have been eating perfectly. I have not fudged one bit. If I have not made it from scratch, I have scoured the label of ingredients. Nothing on the forbidden list has hit my lips. The problem with me feeling better is that I cannot remember how awful I felt. It is the craziest thing. I have kept several different health journals over this whole thing and the same thing keeps happening. When I feel bad I write just how bad I feel both physically and emotionally, so I will remember. On days I feel good I will look back at the days that I felt really bad. I will convince myself that it really was not that bad. Without fail I do it every time. I know I do it and I still can’t stop myself. This is going to be the hardest part of eating healthy. So I sabotage myself. Here is a perfect example. Friday I felt good. I had to cook some brunch casseroles. They had milk and cheese in them. Not too much and there were other ingredients. It smelled so good and I had waited too long to eat so I was hungry. They were warm and ready. I ate some. OH it was soooo good. I felt fine afterwards. I had lots of extra casserole so I fed it to the family for dinner. Of course I ate a little bit more with my dinner. It was a nice change of pace. I have a delay from mouth to results. It is about 24 hours. Sure enough, I began to start feeling yucky tonight. The pattern just keeps repeating. I know it keep repeating. I just can’t seem to stop it.
Right now food is not my friend. What do I cook? What can I eat? What actually sounds good to eat? Meanwhile my kids are munching on fruit, chips, bagels, sandwiches, breakfast cereal. I can sit for hours on the internet just looking at recipes. It would be easy if I was just avoiding gluten, or dairy. Adding fruit and sugar into the mix changes everything. If I do the strict Candida diet, then I am not eating yeast or vinegar either. I always get the response, then what is left? Tonight I agree, not much. I know that is not true. There really is lots, they are just not grab and go.
That is my pity party for the night. I don’t feel good and it feels self-inflicted although in the real world a little cheese and milk should not make me feel so awful. It never did before… Maybe someday it won’t bother me in this crazy way. I can only hope.
Saturday, October 30, 2010
Monday, October 25, 2010
Naturopath visit
Today was the long awaited day. I had another appointment with the naturopath. Before I get into the details I will tell you the funny part. At the beginning of my appointment I watched her choosing her words very carefully. At one point she was trying to figure out how to explain something to me. I waited patiently and then she explained the problem. She said she didn’t know what she should tell me because she was worried that I would take the information home and research it to death. She said it like it was bad thing ;-)) I assured her I would be good. (I think she was more worried that I would call her with another million questions.)
I always learn something new when I visit her. Here is what I learned today. Bacteria have a very clever defense mechanism. They can create hideouts. Basically they create a shell around themselves that make it so our bodies do not recognize them as being the enemy. While they are in this state they are not actively doing anything. They are just laying in wait for the perfect conditions to return to work. That is why you can sometimes take antibiotics and the symptoms will go away and when you stop the problem comes back. It is not a resistance to medication, the bacteria recognized that something was going to kill them and they go into hiding. Okay I am not medically literate maybe that is the definition of a resistant bacterium. She thinks that right now I am doing so well because my body has enough anti-bacterial stuff in my system to keep them in this state, but if I were to stop the supplement they would come out of their shell and I would not be a happy camper. Apparently, those are the nasty bugger that she is now searching for.
On to the appointment…It was a quick visit and I am still trying to digest all the things we discussed. Nothing changed I still am on all the supplements, but she did do some lab work. She explained the labs to me, but I am not sure she was speaking English ;-) I will do my best to regurgitate them here. The results will hopefully point her in a better direction of what we are dealing with. Whether it is Lyme, Candida or something else all together.
I did forgo on the actually Lyme testing. It was expensive! Maybe if the other lab test does not give us any more information or my symptoms become unbearable again, I will reconsider.
Another test I got to take home to do is for Iga. It is something in the lining of the intestines that keeps the things that are supposed to be in my gut, in my gut, and out of my blood stream. She assured me that if they are missing from my system it is an easy fix. I could use an easy fix right now. Especially since I can’t use food (or searching the internet for hours) for an easy fix anymore. :-(
I did get the results for the hormone testing she ran last month. This was before the whole Lyme idea was introduced. The good thing is my estrogen levels are good. The bad news in my progesterone levels were super low, which apparently make me estrogen dominate. I don’t know what that entails, remember my hands tied. I did not do an Internet search. I can only assume that these are not ideal conditions. She gave me a hormone cream last month, already knowing I was imbalanced,(I thought everyone knew that!) but I did not like how I felt when I used it. Apparently, I was applying too much. How was I supposed to know? It says put a pea size amount on your arm. That is what I did. She said start with just enough that I barely see it and then work my way up to a pea size. I would prefer an exact measurement, thank you very much. Oh yeah, I am being forced to get over that trait ;-)) The other thing the results showed is that my insulin levels were too high. It indicated that I may have become insulin resistant. (I did do a quickie search on that one) The Internet said the same thing she did. It can be the result of long term bacterial infection. (It also said it usually causes weight gain, I am so happy the scale did not go the other way!) I always feel better when I can confirm what she tells me. That won me another blood test at the lab. I get to go fasting in the morning.
My feelings on the whole thing visit are mixed. I know she is very confident in what she does. She just does not always articulate the direction she is heading. Sometimes I feel like she is just running tests to see if she can find something. Other times it feels like this is a very well thought out and calculated process. What it really boils down to is that I am impatient, tired and I just want an answer. Well maybe not, I only want an answer if it is fixable. (Yesterday would be good ;-))
P.S...This morning after reading this blog entry, a friend of mine sent me a good link to the leaky gut and Iga. I was not surfing:-) but will read anything that hits my inbox. I thought I would share it is anyone is interested. It just confirms my naturopath is looking at all the options.
http://www.healthychristianliving.com/leaky_gut_syndrome.htm
I always learn something new when I visit her. Here is what I learned today. Bacteria have a very clever defense mechanism. They can create hideouts. Basically they create a shell around themselves that make it so our bodies do not recognize them as being the enemy. While they are in this state they are not actively doing anything. They are just laying in wait for the perfect conditions to return to work. That is why you can sometimes take antibiotics and the symptoms will go away and when you stop the problem comes back. It is not a resistance to medication, the bacteria recognized that something was going to kill them and they go into hiding. Okay I am not medically literate maybe that is the definition of a resistant bacterium. She thinks that right now I am doing so well because my body has enough anti-bacterial stuff in my system to keep them in this state, but if I were to stop the supplement they would come out of their shell and I would not be a happy camper. Apparently, those are the nasty bugger that she is now searching for.
On to the appointment…It was a quick visit and I am still trying to digest all the things we discussed. Nothing changed I still am on all the supplements, but she did do some lab work. She explained the labs to me, but I am not sure she was speaking English ;-) I will do my best to regurgitate them here. The results will hopefully point her in a better direction of what we are dealing with. Whether it is Lyme, Candida or something else all together.
I did forgo on the actually Lyme testing. It was expensive! Maybe if the other lab test does not give us any more information or my symptoms become unbearable again, I will reconsider.
Another test I got to take home to do is for Iga. It is something in the lining of the intestines that keeps the things that are supposed to be in my gut, in my gut, and out of my blood stream. She assured me that if they are missing from my system it is an easy fix. I could use an easy fix right now. Especially since I can’t use food (or searching the internet for hours) for an easy fix anymore. :-(
I did get the results for the hormone testing she ran last month. This was before the whole Lyme idea was introduced. The good thing is my estrogen levels are good. The bad news in my progesterone levels were super low, which apparently make me estrogen dominate. I don’t know what that entails, remember my hands tied. I did not do an Internet search. I can only assume that these are not ideal conditions. She gave me a hormone cream last month, already knowing I was imbalanced,(I thought everyone knew that!) but I did not like how I felt when I used it. Apparently, I was applying too much. How was I supposed to know? It says put a pea size amount on your arm. That is what I did. She said start with just enough that I barely see it and then work my way up to a pea size. I would prefer an exact measurement, thank you very much. Oh yeah, I am being forced to get over that trait ;-)) The other thing the results showed is that my insulin levels were too high. It indicated that I may have become insulin resistant. (I did do a quickie search on that one) The Internet said the same thing she did. It can be the result of long term bacterial infection. (It also said it usually causes weight gain, I am so happy the scale did not go the other way!) I always feel better when I can confirm what she tells me. That won me another blood test at the lab. I get to go fasting in the morning.
My feelings on the whole thing visit are mixed. I know she is very confident in what she does. She just does not always articulate the direction she is heading. Sometimes I feel like she is just running tests to see if she can find something. Other times it feels like this is a very well thought out and calculated process. What it really boils down to is that I am impatient, tired and I just want an answer. Well maybe not, I only want an answer if it is fixable. (Yesterday would be good ;-))
P.S...This morning after reading this blog entry, a friend of mine sent me a good link to the leaky gut and Iga. I was not surfing:-) but will read anything that hits my inbox. I thought I would share it is anyone is interested. It just confirms my naturopath is looking at all the options.
http://www.healthychristianliving.com/leaky_gut_syndrome.htm
Thursday, October 21, 2010
Weight
This post has been mulling around in my head for days. I have just been trying to figure out how I want to word it.
This week I hit a milestone. I have lost 70 pounds. Part of me wants to throw a party. The other part of me is worried about when the weight will stop coming off. To put this in perspective, I now weigh 10 pound less then when I got married 17 years ago, and I weight within 5 pounds of what I weighted in junior high
.
Here is the history. When this first started over a year ago now, a big part of my diet was diet soda and sweets. They were what kept me going. One of the first things I gave up with the soda and items with sugar. What I did not know was that I was going to completely lose my appetite. Last year when this first hit I had a 6 week stint where I was barley functioning. I completely stopped eating. I can’t really describe it. I just didn’t want to eat anymore. Food became repulsive. I could hardly cook for my family. It did not take long before I hit rock. I finally got so I could force myself to drink an Ensure, but sometimes it took several hours to get it down. In those 6 weeks I dropped my first hunk of weight, 20 pounds. I gradually was able to eat again, but it is still forced most days. I don’t enjoy food anymore, but I do enjoy functioning so I eat.
Here is an interesting side note. I have seen lots of doctors and filled out lots of medically questioners this past year. All of them have had similar form of this question. Have you lost or gained 10 pounds recently? I would always check yes. Inevitably when we get to that point of the questionnaire the response is something like this. That is wonderful, keep up the good work. I have not had a doctor yet see this as a red flag. So my question to them is. WHY ASK?
The next 30 pounds were the scary part. I would get on the scale every morning. If got on the scale and I did not lose any weight I knew I would be able to function that day. If I gained a few pounds I would celebrate and convince myself I was finally healing and this was finally all over. Then there were the dreaded mornings when the scale would be 7 to 10 pounds lighter then the day before. I learned that that was my first clue that I was entering into the next 5 to 7 days of the unknown.. I would never know what the symptoms would be or how well I was going to be able to function. Life would just have to shut down and I would do damage control later. I now affectionately refer to those events as episodes. Those would be the days I would go from the scale to my knees and pray first that I was really not going to have another episode second to give me strength to endure whatever my body was about to put me through, and finally please guide me to someone who could possible figure out what is going on.
That brings me to another thought that I have spent time mulling over. The Lord does hear and answer our prayers. Just not the way we expect them. I cannot tell you how many prayers in my life have been about my weight. Just how many times I have pleaded for help to eat healthier and lose weight and to not be in bondage to food. For most of my life food has been a vice. I could have shot a video and been on The Biggest Loser. In one aspect my prayers have been answered. I am no longer in bondage to food, and I have finally lost weight. This is just not what I had in mind :D
That leaves the last 20 pounds. Those I can account for. One of the ways I keep my symptoms endurable is to watch what I eat. What I avoid is anything contains wheat, milk, or sugar in any form (including fruit) . I avoid wheat and milk because they are harder to digest and on seem to tax immune system. I already know my immune system is compromise so I am trying to be extra nice to it. If I eat sugar I can guarantee I am going to not feel well for the next several days. It could be I won’t be able to sleep, sometimes my heart with palpate, or I will be so tired I can’t function, I could have tingling in my feet and hands Just to name a few, I just never know. I do know it is not a blood sugar issue; The doctor have already done some testing and I played a lot with my dads glucose monitor. If I combine the three, let’s just say I have enough experience under my belt that no matter how good it tastes it is never worth it.
Once you remove all of those items from ones diet, there is just not much left. I can’t help but lose weight, but at least I know why I am losing it. I read that if you take all the refined foods from your diet that whole foods will taste better. That it true. Steamed beets and Brussels sprouts actually don’t taste so bad anymore.
This week I hit a milestone. I have lost 70 pounds. Part of me wants to throw a party. The other part of me is worried about when the weight will stop coming off. To put this in perspective, I now weigh 10 pound less then when I got married 17 years ago, and I weight within 5 pounds of what I weighted in junior high
.
Here is the history. When this first started over a year ago now, a big part of my diet was diet soda and sweets. They were what kept me going. One of the first things I gave up with the soda and items with sugar. What I did not know was that I was going to completely lose my appetite. Last year when this first hit I had a 6 week stint where I was barley functioning. I completely stopped eating. I can’t really describe it. I just didn’t want to eat anymore. Food became repulsive. I could hardly cook for my family. It did not take long before I hit rock. I finally got so I could force myself to drink an Ensure, but sometimes it took several hours to get it down. In those 6 weeks I dropped my first hunk of weight, 20 pounds. I gradually was able to eat again, but it is still forced most days. I don’t enjoy food anymore, but I do enjoy functioning so I eat.
Here is an interesting side note. I have seen lots of doctors and filled out lots of medically questioners this past year. All of them have had similar form of this question. Have you lost or gained 10 pounds recently? I would always check yes. Inevitably when we get to that point of the questionnaire the response is something like this. That is wonderful, keep up the good work. I have not had a doctor yet see this as a red flag. So my question to them is. WHY ASK?
The next 30 pounds were the scary part. I would get on the scale every morning. If got on the scale and I did not lose any weight I knew I would be able to function that day. If I gained a few pounds I would celebrate and convince myself I was finally healing and this was finally all over. Then there were the dreaded mornings when the scale would be 7 to 10 pounds lighter then the day before. I learned that that was my first clue that I was entering into the next 5 to 7 days of the unknown.. I would never know what the symptoms would be or how well I was going to be able to function. Life would just have to shut down and I would do damage control later. I now affectionately refer to those events as episodes. Those would be the days I would go from the scale to my knees and pray first that I was really not going to have another episode second to give me strength to endure whatever my body was about to put me through, and finally please guide me to someone who could possible figure out what is going on.
That brings me to another thought that I have spent time mulling over. The Lord does hear and answer our prayers. Just not the way we expect them. I cannot tell you how many prayers in my life have been about my weight. Just how many times I have pleaded for help to eat healthier and lose weight and to not be in bondage to food. For most of my life food has been a vice. I could have shot a video and been on The Biggest Loser. In one aspect my prayers have been answered. I am no longer in bondage to food, and I have finally lost weight. This is just not what I had in mind :D
That leaves the last 20 pounds. Those I can account for. One of the ways I keep my symptoms endurable is to watch what I eat. What I avoid is anything contains wheat, milk, or sugar in any form (including fruit) . I avoid wheat and milk because they are harder to digest and on seem to tax immune system. I already know my immune system is compromise so I am trying to be extra nice to it. If I eat sugar I can guarantee I am going to not feel well for the next several days. It could be I won’t be able to sleep, sometimes my heart with palpate, or I will be so tired I can’t function, I could have tingling in my feet and hands Just to name a few, I just never know. I do know it is not a blood sugar issue; The doctor have already done some testing and I played a lot with my dads glucose monitor. If I combine the three, let’s just say I have enough experience under my belt that no matter how good it tastes it is never worth it.
Once you remove all of those items from ones diet, there is just not much left. I can’t help but lose weight, but at least I know why I am losing it. I read that if you take all the refined foods from your diet that whole foods will taste better. That it true. Steamed beets and Brussels sprouts actually don’t taste so bad anymore.
Sunday, October 17, 2010
Another possibility
I cannot tell you how much this blog has helped me to emotionally deal with all of this. I think it may prove more valuable than I anticipated. I got a package in the mail from one of my blog readers. In the package was a photocopy from a book and a little book called The Bible Cure for Candida and Yeast Infections. Weeks prior to the start of the blog and receiving this package, I had actually spent many hours on the internet reading about Candida. I am not going to give the big explanation on Candida. You can Google it. Candida is when the yeast in your body gets out of balance with all the good bacteria, and it wreaks havoc on your system. My Chiropractor was actually the first to suggest Candida. When I suggested the possibility to my Naturopath she down played it. Saying we were already addressing that possibility with the supplements I am currently taking and I did not need to do the extreme Candida diet. I am not discounting my Naturopath, she has mentioned that is a learning process, we learn something every time my body responds either favorable or adversely to a treatment or a food. She has also commented on several occasions that based on my bodies reactions that my body is more fragile then she thought.
I do know that I recently just went through antibiotics and ended up with thrush. The MD was shocked that I would have gotten thrush from the antibiotics. She threw 3 anti fungal prescriptions at it. I finally had to call the naturopaths. Her herb suggestions on top of the last prescriptions finally cleared it up.
After reading this book about Candida, I am looking at this as a real possibility. Luckily it can be cured buy a strict diet and a few supplements. My experience has been that I can get really sick just by putting the wrong thing in my mouth. It is usually not at the moment that I eat it, but within a day or two depending on what I ate. It can be debilitating. I was enlightened by reading this book. I could literally draw parallel lines between Lyme symptoms and Candida symptoms. They have so many of the same symptoms, including neurological problems. The deflating part is there is no definitive test for Candida. Most doctors don’t recognize it as a problem in the general population.(Just my luck!)
The good news is that I am basically all ready living the Candida diet. No sugar, yeast, milk. The book even has a section on needing to detox your liver.
Friday was a crazy day. I was gone all day. I knew I needed my energy and strength so I started my day with an Ensure. I should have read the label, 25g of sugar (OOPS) I had the kids with me shopping at waited too long to eat. We stopped at Sam’s club knowing I could grab a salad. They were out, but I had to eat, so I ate a hot dog. What was I thinking? I was feeling great, up until I made those fatal mistakes. Well they were not fatal. I am still alive, but I had felt amazing for 3 days in a row and by that night I was back to enduring symptoms. I know it will take a couple of days for this mistake to clear out of my system, especially if it is Candida and I did just give them a major feast. Live and learn, but at least now I am learning.
I still have another week before I see my Naturopath again, but that should give me time to experiment. I am going to try to eat perfectly this week. I figure if my symptoms diminish again then I am going to wait on all the Lyme testing and treatment. (The tests are expensive and usually inconclusive) If it really is Lyme it should not go away just because of my diet. If I eat perfectly and I get worse then I will look more into the possibility of Lyme. I have dealt with it this for so long what is another month or two.
I am giving up hope for anything in my health ever being black and white!
I do know that I recently just went through antibiotics and ended up with thrush. The MD was shocked that I would have gotten thrush from the antibiotics. She threw 3 anti fungal prescriptions at it. I finally had to call the naturopaths. Her herb suggestions on top of the last prescriptions finally cleared it up.
After reading this book about Candida, I am looking at this as a real possibility. Luckily it can be cured buy a strict diet and a few supplements. My experience has been that I can get really sick just by putting the wrong thing in my mouth. It is usually not at the moment that I eat it, but within a day or two depending on what I ate. It can be debilitating. I was enlightened by reading this book. I could literally draw parallel lines between Lyme symptoms and Candida symptoms. They have so many of the same symptoms, including neurological problems. The deflating part is there is no definitive test for Candida. Most doctors don’t recognize it as a problem in the general population.(Just my luck!)
The good news is that I am basically all ready living the Candida diet. No sugar, yeast, milk. The book even has a section on needing to detox your liver.
Friday was a crazy day. I was gone all day. I knew I needed my energy and strength so I started my day with an Ensure. I should have read the label, 25g of sugar (OOPS) I had the kids with me shopping at waited too long to eat. We stopped at Sam’s club knowing I could grab a salad. They were out, but I had to eat, so I ate a hot dog. What was I thinking? I was feeling great, up until I made those fatal mistakes. Well they were not fatal. I am still alive, but I had felt amazing for 3 days in a row and by that night I was back to enduring symptoms. I know it will take a couple of days for this mistake to clear out of my system, especially if it is Candida and I did just give them a major feast. Live and learn, but at least now I am learning.
I still have another week before I see my Naturopath again, but that should give me time to experiment. I am going to try to eat perfectly this week. I figure if my symptoms diminish again then I am going to wait on all the Lyme testing and treatment. (The tests are expensive and usually inconclusive) If it really is Lyme it should not go away just because of my diet. If I eat perfectly and I get worse then I will look more into the possibility of Lyme. I have dealt with it this for so long what is another month or two.
I am giving up hope for anything in my health ever being black and white!
Tuesday, October 12, 2010
The Skeptic
Cut and Dry, Black and White. That is just the way I like it. That is the only way I like it. I can already tell I am not going to like this, but I am sure some people are really going to enjoy watching me getting over this issue :-D
Not everything that my naturopath has giving me has made a noticeable difference. I am usually skeptical about what she wants me to do next. Let’s just say I am not completely converted yet. That being said I have had the same problem with regular MD’s. Some of the medications they have put me on have not been effective. But at least the medications come with warning labels, so I at least know that the ultimate adverse reaction might be death LOL!
My naturopath did not want to start treatment or do the blood tests until I was over the latest bug to hit our home. That is makes me wonder if we will ever start ;-) She did ask me to do some things to get my body ready for treatment.
I need to back up since most of you are just tuning in to all the steps I have taken getting to this point. I have had the privilege over the past year of taking a course in hard knock when it comes to major lifestyle modifications. For the better part of a year I have had to learn to not eat dairy, gluten, and sugar (all forms, including fruit). It sounds extreme and trust me it is, but if I fudge at all I pay for it in the way feel. There is a whole long explanation as to why that is, but I will save that for a different post.
So here are my newest instructions. Liver Detox. The first thing I think, probably like most of you, is this for real! (Always the skeptic) Here are the instructions she gave me which were pretty simple. Go to the health food store and get a tea and says it is for Live Detox. Drink 3 glasses a day until my appointment in two weeks. Also make sure my diet includes lots of root vegetables, but not white potatoes. (So much for In-and-Out fries :-( )
So first I have the battle within about drinking tea. It’s a black and white thing. Then I have to learn how to eat root veggies. I have barely graduated beyond the 4 veggies I always buy in the store celery, carrots, broccoli, and salad. I was just barley exploring the world of leafy dark greens and now I have to figure out root veggies.
I decided to ba a good girl and did what I was told. She said I would feel better. Would you believe…SHE WAS RIGHT! These last couple of days I have had more energy. I still get tired, but I don’t have to stop and rest. I am so excited….I am also a skeptic…I have had good days before. The real test will be if it lasts more than a few days. I can only hope.
Not everything that my naturopath has giving me has made a noticeable difference. I am usually skeptical about what she wants me to do next. Let’s just say I am not completely converted yet. That being said I have had the same problem with regular MD’s. Some of the medications they have put me on have not been effective. But at least the medications come with warning labels, so I at least know that the ultimate adverse reaction might be death LOL!
My naturopath did not want to start treatment or do the blood tests until I was over the latest bug to hit our home. That is makes me wonder if we will ever start ;-) She did ask me to do some things to get my body ready for treatment.
I need to back up since most of you are just tuning in to all the steps I have taken getting to this point. I have had the privilege over the past year of taking a course in hard knock when it comes to major lifestyle modifications. For the better part of a year I have had to learn to not eat dairy, gluten, and sugar (all forms, including fruit). It sounds extreme and trust me it is, but if I fudge at all I pay for it in the way feel. There is a whole long explanation as to why that is, but I will save that for a different post.
So here are my newest instructions. Liver Detox. The first thing I think, probably like most of you, is this for real! (Always the skeptic) Here are the instructions she gave me which were pretty simple. Go to the health food store and get a tea and says it is for Live Detox. Drink 3 glasses a day until my appointment in two weeks. Also make sure my diet includes lots of root vegetables, but not white potatoes. (So much for In-and-Out fries :-( )
So first I have the battle within about drinking tea. It’s a black and white thing. Then I have to learn how to eat root veggies. I have barely graduated beyond the 4 veggies I always buy in the store celery, carrots, broccoli, and salad. I was just barley exploring the world of leafy dark greens and now I have to figure out root veggies.
I decided to ba a good girl and did what I was told. She said I would feel better. Would you believe…SHE WAS RIGHT! These last couple of days I have had more energy. I still get tired, but I don’t have to stop and rest. I am so excited….I am also a skeptic…I have had good days before. The real test will be if it lasts more than a few days. I can only hope.
Monday, October 11, 2010
The Big Kahuna
Last night I fell into bed exhausted. I knew I was in trouble when I had laid there for a half an hour wide awake. One of the things that a friend taught me and I have put into practice is to just lie there, even if I can’t sleep. My body is still getting rest. So I laid there. Then it happened. I had just drifted off to sleep and it started. The tingling sensation that starts somewhere in the core of my chest and runs out to my finger tips in waves followed by my heart beating so hard I think it is going to pop out of my chest. It used to scare me. For lack of a better description is feels like the fight or flight feeling you get when you see something bad happen, like one of you children run out in front of a an oncoming car. The Dr’s first treated it as anxiety. They loaded me with all sorts of depression and anti anxiety medications. None of them worked. The psychiatrist was the first specialist to tell me that he had no idea what was going on and no explanation as to why I was not responding to the medications.
When the first wave hit last night, at first I was upset. I started down the path of the GRRRRs, why is it back. What triggered this symptom again? Then I reasoned that this train of thought is not going to make it any better. I cannot answer the question, so I imagined I was on a surf board riding a giant wave. Now this symptom has a name. The Big Kahuna. For the next 3 hours every time I would drift off to sleep my body would wake me up and I would get to ride a big Kahuna. Then while I was waiting to fall back asleep I thought of all the witty ways I could blog about it.
One of the drawbacks to the Big Kahunas is they are like power naps. They wake me up and my body thinks it has slept. I wake up from Big Kahunas totally rested. It takes a ton of will power to just lay there and wait to fall asleep again
Saturday, October 9, 2010
Prologue
I recently went to Time Out for Women where I heard the most touching story. The speaker told about how she got married later in life. She was 43 and having her second child. Like all expecting mothers, she thought about all the things that could go wrong with the baby. I don’t know a mother who does not have the same thought. Finally she delivered a beautiful baby boy. The Doctors initially announced that he was perfect but she was still worried. About a month later the Doctors told her they were concerned and asked to run some tests on the baby. To her worst fear, the tests came up positive. She learned that her baby would never have a ‘normal’ life and it would face many challenges. She said all of a sudden the worst thing ever was happening to her. She related that she left the doctor’s office with tears in her eyes. She went to the car and strapped the baby into the car seat then sat and looked at that precious baby. She realized that nothing so beautiful could possibly be the worst thing ever
The worst thing ever may be happening to me…My children are fine but I have spent the last year chasing what has become for me the worst thing ever. I have bounced from specialist to specialist and from test to test. The results according to all who have examined me and read my test results are that I am healthy – the test results are almost always within normal parameters. So why do I feel so awful? Why are there days I can hardly focus to cook, or days I am so tired I cannot keep up with the house cleaning? Why do I have unexplained pain that lasts for months? Why could I not sleep for months? Along the way there are days I feel almost normal again. I never know what the day is going to bring until I get out of bed. Most days I will feel just fine and then exhaustion hits like a ton of bricks. I could go on and on. Here are the things I do know: I know that I am 65 pounds (and counting) lighter that I was a year ago. I know that whatever it is, it comes in episodes, but the episodes are not predictable and I never exactly know what the group of symptoms will be.
Two weeks ago I went to the ER because half of my face going numb. The ER ruled out the a few things like a stroke and suggested maybe I had early Bells Palsy. I was sent home without any treatment.
Whatever I am suffering with, it is now in my nervous system. The frustrating truth is that nobody seems to see the big picture about what is going on. This is affecting my entire body.I am not going to spend hours rehashing all of the things that I have been tested for. I have just spent a lot of time praying that Heavenly Father would lead me to someone who would help me. After bouncing from doctor to doctor, I eventually turned to alternative medicine. I first did acupuncture and it helped for a while. But after several months even he became baffled as to why my body was not responding to the normal treatment. I tried more doctors and endured more tests, but to no avail. I finally started seeing a naturopath. I would have never chosen this route had I not been so frustrated with doctors saying they can’t find the cause of my symptoms.
They say desperate times call for desperate measures. Deciding to go to a naturopath felt like a pretty desperate measure at the time. Luckily for me I have a good friend who had amazing results with this naturopath. That made my choice a little easier. The naturopath has been working with me for several months now. Although I am much improved, I am still having episodes that take me out of commission - like the one that landed me in the ER I mentioned above.
This past Monday I called the naturopath in utter frustration and she gave me some great news. She told me that she attended a conference recently and she now thinks she knows what we are dealing with! She explained to me that my symptoms coincide with Chronic Lyme Disease. I knew Lyme disease was a tick bore disease but I knew nothing about Chronic Lyme Disease. She reassured me that this disease is treatable. People she knows have made a full recovery.
I had no idea the can of worms it was going to open in my life. As of today, I have mixed feelings about Chronic Lyme Disease. I started to research what Chronic Lyme disease was. I found that not very many in the medical community recognize the chronic form of Lyme disease. I learned that Lyme disease was only discovered in 1982 and the chronic form wasn’t identified until later. That is not all that long ago. I learned there are no conclusive tests for Chronic Lyme Disease. With a lack of reliable testing it becomes a clinical diagnosis. The doctor typically has to make the diagnosis based on symptoms. There is a big rift between members of the medical community as well as government organizations like the Center for Disease Control and Center for Infectious Diseases. Most insurance companies do not recognize the diagnosis therefore they will not cover what few treatments that are out there. I would much prefer to have something commonly accepted, easily treated. Black and white, cut and dry is not what I have.
I started looking for doctors that knew something, anything about Lyme Disease. I stumbled upon a retired MD only about 30 minutes from my home that specialized in Chronic Lyme Disease. He is not actively treating patients anymore because of his age but he stays up to date with the issues. The sweet gentlemen spent over an hour of the phone with me. He listened to my medical challenges and experiences over the past few years. When all was said and done he agreed with what the neuropath had suggested. There is a very real possibility that I may be dealing with Chronic Lyme disease. He then started filling my head with a lot of information. I am sure I missed most of it. He was so kind and concerned that he took time to call a doctor he knew who treated Lyme to see if he was accepting new patients. Unfortunately, the other doctor was not taking new patients.
In my research I found there is more than one way to treat this and the treatment needs to be customized to the patient. I really thought that I wanted a regular MD to confirm the diagnosis. So far this the closest I have gotten to putting a name to whatever is happening, I am not going to give too many gory details as to how and why I came to my decision, but for now my naturopath has been my greatest ally and most informative. She is ultimately the most confident that we are heading in the right directions and we will run some of the tests and see what results we get.S
That leads me to my new blog. I called her today all FREAKED out about all the things I have read and all the things the people on the Lyme group were telling me. She ordered me off the internet. I think as much for her sanity as for my own sanity;-)). The problem is I cannot just sit around. Someone has given me hope. Hope that I don’t have to continue grabbing at straws. I have an overwhelming need to do something proactive. This is my new project, to blog my journey. Some of you may enjoy following this journey, and some of you this may be the only thing you ever read, but for me it will be therapeutic.
Ultimately nothing has changed, I don’t have an answer, but I finally have a direction. That is more than any doctor has been able to offer in over a year.I decided not to make the blog private, mainly because I don’t like to sign into other people’s blog. For me to feel comfortable staying public you won’t see any locations or doctor’s name on this blog, but those who know me can always ask.
So I say…let the journey begin. I am looking forward to someday when I can write on the final page…And she lived happily ever after. But until then you are welcome to follow me as I fill the pages in-between.
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