I have been home a little over two weeks, and I have made some progress but it has been painfully slow in my book. Last weekend, in my desperation to figure out why I relapsed so badly, I started reading a book Dr. Fong recommended to me called The ph Miracle. The book discusses the benefit of keeping the ph in our body more alkaline and how acidity stresses the body and immune system. My gastrointestinal tract is so acidic and uncomfortable that I became very interested in their thoughts about how to make the body more alkaline. In addition, the program is suggested in order to help detox the body of toxins. Since my lymph nodes hurt so badly and I know I am still fighting a systemic candida infection...it caught my attention. Could it help me get rid of my lymph node pain and flu-like symptoms?
The first step of the program is a green veggie juice fast for three to ten days in order to raise the body's ph. Right then and there I thought...I can't even stand the smell of carrot juice. How could I survive on the juice of green vegt??!! Again, let me emphasize the word desperate. At this point, I will do anything to feel better. I decided I would go on a vegt. frenzy the very next day. However, the next day I was so weak I could hardly get dressed. I knew grocery shopping for this quantity of green veggies was out of the question. Then, a dear friend offered to do my shopping and deliver the groceries (thank Deb!). Within hours, the veggies where in the house and the vegt. fast was on. It was worth a shot! My little boy opened the refrigerator and said, "Mommy, our refrigerator is all green!" Green veggies were everywhere!
For four days I juiced more green and yellow vegt. than I have probably eaten in my entire life. I only saw small improvements at first (such as less acid in my stomach). Over the last five days, I have been adding more things back to my diet and gradually feeling less and less lymph node pain. I am continuing the juice as well as eating meals, and believe it or not, I am beginning to like the juice!
While I have been juicing, I have also been reading more and more about the immune system and liver. I had hepatitis C for seven years (I went through interferon treatment in 2005, and no longer have a viral load), and at the clinic, they told me on several occasions, "your liver is very sensitive." That was part of the explanation for my body being "sensitive" to many of the medications and supplements. In my reading, I am learning that there are specific enzymes the liver uses to breakdown toxins in order for them to be taken out of the body. There are times, due to prolonged sickness, stress, ect. the body may not produce enough of these enzymes to break down toxins. Consequently, the toxins are reabsorbed into joints and tissues and causes fatigue, fibromyalgia and pain as well as a host of other symptoms. This caught my attention! Could this be part of my problem? Based on blood work and my biopsy report, my liver is not "damaged." However, it certainly has been through the wringer!
Last week, as I was shopping at Whole Foods for another load of green vegt., I happened to go down the book aisle. I noticed a book titled DETOX in bold, huge letters. It caught my attention, but I kept walking and thought to myself. "I don't look at random books in grocery stores for advice"....but couldn't get it out of my mind. I really felt like God was saying, "Go back and look at that book!" I turned the cart around and went against my "cardinal rule." I picked up the book, and opened it to a random page. The subtitle of the paragraph on the page was, "Do you have a sluggish liver?" I almost laughed out loud! I replied....evidently! The book gave details about the specific enzymes the liver uses to break down toxins and suggested eating specific vegetables in order to replenish these enzymes. I took inventory of my cart and went back to the produce section for the ones I was missing. Not only did I buy more vegetables, I bought the book too! How could I forget the verse Matt 6:26 that says God will take take care of us like He feeds the birds? I guess that includes helping me with my grocery list!
In addition to the "green" diet, I have continued lymphatic drainage, colonics and I started acupuncture this week. It was pretty crazy having little needles sticking out everywhere but it wasn't bad. By the way, the acupuncture doctor said, "You are a complicated case, and I think one of your root issues is your liver." Hum....haven't I heard that somewhere before?
Somehow I knew arriving home was only a new beginning toward recovery, I think my instincts were right. There is much to learn, and much to heal.
I must go...time for another green drink!
Love to all,
Ronda
Saturday, June 7, 2008
Friday, May 30, 2008
I am home!
Greetings from Virginia! I am home, and so happy to be with my family. When Chris and I arrived home last Friday night, Chris' parents, Bob & Maxine, were here to greet us with lots of hugs and love! (Thank you Bob and Maxine for helping us in so many ways! We love you!) The kids were asleep so I kissed their heads and watched them sleep for awhile (aren't they angelic ....when they are sleeping!)
Chris, I and the kids spent the rest of the weekend enjoying the fact that we are all in the same house together! One of the dearest "welcome home" gestures I received was from Seth. He sang and played, on his guitar, a song he called, "Welcome Home Mommy!" (He owns the copyright to it too!). It was incredibly sweet...one of the sweetest songs I have ever heard!
One of the possibilities is something I haven't really talked about. When I was tested for food allergies, I was also tested for seasonal and chemical allergies. I don't have seasonal allergies but I am allergic to two pesticides and a chemical called PVP/Povidone. It is found in a variety of things from laundry detergent, hairspray, ink jet printing, photo processing paper, and textile dyes. I didn't take the PVP allergy too seriously. I stopped using hairspray (health is winning over vanity!), changed laundry detergents and didn't think anything else about it.
After sleeping the first night, at home, in my bed, I woke up significantly weaker and with pain I haven't experienced in several weeks. I was trying to think of ALL the possible reasons. Then, it hit me....last year, I purchased a new (red)bedspread and curtains (around the time I started having more symptoms). Could the bedspread (textile dye) have PVP in it? Could I be allergic to my bedspread and curtains? Then, I saw a million things in my house that could be tainted with "textile dye"....including my clothes! (If I am wearing a white robe the next time you see me, you will know the reason!) Just call me "bubble girl!" In my quest to figure out why I am having these symptoms, we are trying to decrease possible PVP exposure, and follow all of the doctor's recommendations.
I must admit, I have been rather discouraged and disappointed the last few days. I have made progress, but I feel as though I have taken ten steps forward and five steps back. As I was brewing over my disappointment this morning, I checked my e-mail, and received this week's lesson plan for Raegan's class at church. There was a paragraph that spoke directly to me. It said, "Through every trial and tribulation, it is hard to remember that God's love is being poured out upon us. Often, we wonder why God would allow something bad to happen. Yet God's intent is to build into our lives the ability to stay the course and develop strong character, so that we can REST in the assurance that God has us in the very palm of His hand." Those words were intended for my four year old, but they touched the heart of this forty year old!
He is still walking with me.
Have a wonderful weekend.
Love to all!
Ronda
I talked with Dr. Fong on the phone a few nights ago, and he said it could be due to
Chris, I and the kids spent the rest of the weekend enjoying the fact that we are all in the same house together! One of the dearest "welcome home" gestures I received was from Seth. He sang and played, on his guitar, a song he called, "Welcome Home Mommy!" (He owns the copyright to it too!). It was incredibly sweet...one of the sweetest songs I have ever heard!
Since I have been home, several people have asked me the obvious questions, "How are you now?" "Do you still have lyme?" During my last day of treatment, I had those questions answered. They took another sample of blood to view under the microscope (in order to have a before and after comparison), and the sample showed a very significant decrease in lyme. However, I still have some work to do! The first slide showed about 30 cells infected with lyme and there were only about 5 cells infected on the second slide! Yea!! They also saw toxins in my blood...after six weeks of detoxing regularly, I still have toxins! A few of the injections I am taking at home will help to continue decrease the amount of lyme in my body. The other big concerns remain my food allergies, gastrointestinal tract/parasite, fatigue, occasional heart palpitations, insomnia and the candida issue.
Since I have been home, my level of energy and strength has not been as good as it had been in Reno. I am also experiencing flu-like symptoms once again. I am surprised, and disappointed. I don't know if the stress of adjusting to home is hitting me hard, or if I am doing something unknowingly that is weakening my body, or if it is the fact that my body is still fighting infections (but I don't have the luxury of the IV's to keep the toxins flushed out of my system). I talked to Dr. Fong a few nights ago, and he said it could be any or all of the above reasons. It will continue to take time to heal.
One of the possibilities is something I haven't really talked about. When I was tested for food allergies, I was also tested for seasonal and chemical allergies. I don't have seasonal allergies but I am allergic to two pesticides and a chemical called PVP/Povidone. It is found in a variety of things from laundry detergent, hairspray, ink jet printing, photo processing paper, and textile dyes. I didn't take the PVP allergy too seriously. I stopped using hairspray (health is winning over vanity!), changed laundry detergents and didn't think anything else about it.
After sleeping the first night, at home, in my bed, I woke up significantly weaker and with pain I haven't experienced in several weeks. I was trying to think of ALL the possible reasons. Then, it hit me....last year, I purchased a new (red)bedspread and curtains (around the time I started having more symptoms). Could the bedspread (textile dye) have PVP in it? Could I be allergic to my bedspread and curtains? Then, I saw a million things in my house that could be tainted with "textile dye"....including my clothes! (If I am wearing a white robe the next time you see me, you will know the reason!) Just call me "bubble girl!" In my quest to figure out why I am having these symptoms, we are trying to decrease possible PVP exposure, and follow all of the doctor's recommendations.
I must admit, I have been rather discouraged and disappointed the last few days. I have made progress, but I feel as though I have taken ten steps forward and five steps back. As I was brewing over my disappointment this morning, I checked my e-mail, and received this week's lesson plan for Raegan's class at church. There was a paragraph that spoke directly to me. It said, "Through every trial and tribulation, it is hard to remember that God's love is being poured out upon us. Often, we wonder why God would allow something bad to happen. Yet God's intent is to build into our lives the ability to stay the course and develop strong character, so that we can REST in the assurance that God has us in the very palm of His hand." Those words were intended for my four year old, but they touched the heart of this forty year old!
He is still walking with me.
Have a wonderful weekend.
Love to all!
Ronda
I talked with Dr. Fong on the phone a few nights ago, and he said it could be due to
Thursday, May 22, 2008
Springs in the Desert
One day, 4 hours and thirty minutes until I land on Virginia soil....can you tell I am watching the clock? As I come to the end of my stay and treatment in Reno, I can't help but reflect on the time I have spent here and all of the incredible things I have learned and experienced. It has been a healing experience physically, emotionally and spiritually. It has been quite a ride...one I will never forget. Earlier in the week, as I was having a reaction to my push (it was a good one!), I was thinking about this healing experience, and I had a moment of clarity. In order to fully explain, I must take you back to last year.
During March, 2007, I came across a few verses in the Bible that puzzled me. (There are many things in the Bible that puzzle me but this was the puzzle of the hour.) The verses are Psalm 84:5-6 "Blessed (happy) is the man whose strength is in the Lord; in whose heart are the highways to Zion! Passing through the valley of Baca they make it a place of springs..."
For some reason I could not get these verses out of my head, nor could I fully understand their meaning. I was so curious; It became a challenge. I even looked up the key words in Hebrew (I know! I am a "geek." You can say it!) but I still couldn't completely "get" it. As I was laying in bed, during a push, (too weak to move) the meaning of these verses became very clear to me. This is what came to me...
"Blessed (happy) is the man whose strength is in the Lord.."
I have been striped of strength; my ability to care for my husband and children, my ability to work, my ability to control what goes in my body (and what comes out!), my ability to sleep, even my ability to get dressed and showered on some days. I have needed His strength because I have none of my own. I am a "human-female" full of fears, doubts and insecurities, and in my weakest times, He has been my strength. I have reached out to Him because I needed Him so desperately and He met me in the middle of my weakness.
"In whose heart are the highways to Zion!"
It is this place of weakness that has been my "highway", my way, to Zion. ("Zion" is the place God dwells or God's presence) It has been my highway to depend on Him and His presence like never before.
"Passing through the valley of Baca (sorrow), they make it a place of springs..."
Reno is a valley with desert terrain and mountains all around! I am a visual learner...how much more visual can you get! Being in this valley, in pain and need, I have found a place of springs.."Water" in the desert. How incredible that Jesus says, " I am the Living Water...drink of me and you will never thirst again." (Another verse that has puzzled me...How do I drink from Jesus? Maybe, I am a little too visual) This "Water" is the same Jesus who I asked to forgive my sins and come into my life as a child. He is now close and offering me water, His presence, in the midst of my sorrow. I have to tell you, I have tasted and it is sweet!
I am not a theologian and obviously a slow learner. (I am not sure I will be so curious in the future!) God had to take great lengths to show me the meaning of these verses, but you know, I wouldn't go back! These verses have helped me to see a meaning beyond my recovery. It will forever be imprinted on my heart, and I will never be the same!
Thank you for indulging me as I have rambled on, these last six weeks, about pushes, needles, body fluids and the like! I have been very honest about this road (I guess "torture" can make you pretty honest!), and you have been very gracious to keep reading. As I prepare to go home, I don't feel like this road has ended. Infact, in many ways, I feel it is just beginning! I will be going home with daily injections, medication and a plan to take care of myself. I will also have a few 4-5 day follow- up treatments (at three months and six month) in Reno. I am glad to have a plan, and I do feel that I am on a "healing road."
When I return home, I will continue to write about my recovery, and you are welcome to come along with me! I will try my best to update you as much as possible. Thanks again for your outpouring of love and support and for walking with me on this journey.
Love to all!
Ronda
"Happy is the man whose strength is in the Lord
During March, 2007, I came across a few verses in the Bible that puzzled me. (There are many things in the Bible that puzzle me but this was the puzzle of the hour.) The verses are Psalm 84:5-6 "Blessed (happy) is the man whose strength is in the Lord; in whose heart are the highways to Zion! Passing through the valley of Baca they make it a place of springs..."
For some reason I could not get these verses out of my head, nor could I fully understand their meaning. I was so curious; It became a challenge. I even looked up the key words in Hebrew (I know! I am a "geek." You can say it!) but I still couldn't completely "get" it. As I was laying in bed, during a push, (too weak to move) the meaning of these verses became very clear to me. This is what came to me...
"Blessed (happy) is the man whose strength is in the Lord.."
I have been striped of strength; my ability to care for my husband and children, my ability to work, my ability to control what goes in my body (and what comes out!), my ability to sleep, even my ability to get dressed and showered on some days. I have needed His strength because I have none of my own. I am a "human-female" full of fears, doubts and insecurities, and in my weakest times, He has been my strength. I have reached out to Him because I needed Him so desperately and He met me in the middle of my weakness.
"In whose heart are the highways to Zion!"
It is this place of weakness that has been my "highway", my way, to Zion. ("Zion" is the place God dwells or God's presence) It has been my highway to depend on Him and His presence like never before.
"Passing through the valley of Baca (sorrow), they make it a place of springs..."
Reno is a valley with desert terrain and mountains all around! I am a visual learner...how much more visual can you get! Being in this valley, in pain and need, I have found a place of springs.."Water" in the desert. How incredible that Jesus says, " I am the Living Water...drink of me and you will never thirst again." (Another verse that has puzzled me...How do I drink from Jesus? Maybe, I am a little too visual) This "Water" is the same Jesus who I asked to forgive my sins and come into my life as a child. He is now close and offering me water, His presence, in the midst of my sorrow. I have to tell you, I have tasted and it is sweet!
I am not a theologian and obviously a slow learner. (I am not sure I will be so curious in the future!) God had to take great lengths to show me the meaning of these verses, but you know, I wouldn't go back! These verses have helped me to see a meaning beyond my recovery. It will forever be imprinted on my heart, and I will never be the same!
Thank you for indulging me as I have rambled on, these last six weeks, about pushes, needles, body fluids and the like! I have been very honest about this road (I guess "torture" can make you pretty honest!), and you have been very gracious to keep reading. As I prepare to go home, I don't feel like this road has ended. Infact, in many ways, I feel it is just beginning! I will be going home with daily injections, medication and a plan to take care of myself. I will also have a few 4-5 day follow- up treatments (at three months and six month) in Reno. I am glad to have a plan, and I do feel that I am on a "healing road."
When I return home, I will continue to write about my recovery, and you are welcome to come along with me! I will try my best to update you as much as possible. Thanks again for your outpouring of love and support and for walking with me on this journey.
Love to all!
Ronda
"Happy is the man whose strength is in the Lord
Wednesday, May 21, 2008
Food Allergies and more
Tomorrow is my last day of treatment! It is hard to believe. I think it will be real when I am at home. As excited as I am about coming home, I must admit, I have been a little nervous. I know what to expect here and when I have a problem, I have a safety net...the clinic is only a few miles away. I have wondered what to expect when I go home.
A few days ago, a new face appeared in the IV room. She is from NYC and went through five weeks of treatment in January for lyme disease. (She had neurological symptoms such as numbness and she was dragging her left leg. Since treatment, she is walking fine and no longer suffering from these symptoms! Isn't that incredible?!!!) She is back for a week of follow-up treatment. I told her I will be going home soon, and she said, "You will be taking it easy for awhile, Won't you?" I didn't dare tell her I was hoping to go back to work next week. I told her about my concerns when I get home, and she told me it took her three to four weeks to begin feeling stronger. As I continue to ask questions, I am being advised that rest is necessary to recuperate from treatment and allow the immune system to continue to get stronger. So, I am rethinking things. I have decided to definitely take it easy for awhile, and let my body dictate my activity level. This is a journey, and I need to pace myself.
With that said, I do feel better, and have times that I am free of symptoms. I am getting a taste of what it is like to feel good again. Because of this taste of "feeling good," I am noticing when symptoms come back. In the past, I have had so many symptoms, it has been difficult to know "what" was causing "what." On Sunday, I felt good, and after lunch, I started having a bad headache and fatigue. I noted it, but didn't know why it happened. Monday morning I woke up feeling really good. I ate breakfast (rice cakes, cashew butter and blackberries...this is what you eat in my world), and immediately, I had a headache and felt awful. Then it hit me, "Maybe, the food I am eating is causing the symptoms." I gathered samples of some suspicious foods and brought them to clinic. They tested me with the foods, and found that, yes indeed, I have developed more food sensitivities! Soon I will be eating tree bark....No, you don't have pests eating your trees...it is your starving neighbor!!
Since my body is continuing to develop sensitivities, they have advised me to go on a rotation diet. With this diet, you rotate foods every four days so your body won't be as likely to develop sensitivities. (I only have four foods left so it shouldn't be too hard!) I also starting taking food allergy drops. The drops are suppose to desensitize the body to foods so, over time, foods can be reintroduced. Unfortunately, I had a bad reaction to one of the food allergy drops today. I will take the drops my body can tolerate and give my immune system time to get stronger.
With all of the new awareness of how foods are effecting me. Today, the doctor suggested I stay one more week to further "tweak" things for my food allergies. As you can imagine, I wasn't fond of that idea! After a few tears, and looking at all the options, I am still planning to come home. They are willing to work with me through phone and e-mail, and send me new things to try as I need them. I think getting home, and giving my body a break will be good medicine in itself!
Push Update: I have had moderately strong reactions this week with fever and body aches, but by morning I feel good and I am ready for the day! I only have two more to go!
I must share something that just happened as I have been writing. A patient, who is in a wheelchair, just walked with a walker. The whole clinic broke out in applause! How incredible!
I will write tomorrow. My last blog from Reno...stay tuned!
Love to all!
Ronda
A few days ago, a new face appeared in the IV room. She is from NYC and went through five weeks of treatment in January for lyme disease. (She had neurological symptoms such as numbness and she was dragging her left leg. Since treatment, she is walking fine and no longer suffering from these symptoms! Isn't that incredible?!!!) She is back for a week of follow-up treatment. I told her I will be going home soon, and she said, "You will be taking it easy for awhile, Won't you?" I didn't dare tell her I was hoping to go back to work next week. I told her about my concerns when I get home, and she told me it took her three to four weeks to begin feeling stronger. As I continue to ask questions, I am being advised that rest is necessary to recuperate from treatment and allow the immune system to continue to get stronger. So, I am rethinking things. I have decided to definitely take it easy for awhile, and let my body dictate my activity level. This is a journey, and I need to pace myself.
With that said, I do feel better, and have times that I am free of symptoms. I am getting a taste of what it is like to feel good again. Because of this taste of "feeling good," I am noticing when symptoms come back. In the past, I have had so many symptoms, it has been difficult to know "what" was causing "what." On Sunday, I felt good, and after lunch, I started having a bad headache and fatigue. I noted it, but didn't know why it happened. Monday morning I woke up feeling really good. I ate breakfast (rice cakes, cashew butter and blackberries...this is what you eat in my world), and immediately, I had a headache and felt awful. Then it hit me, "Maybe, the food I am eating is causing the symptoms." I gathered samples of some suspicious foods and brought them to clinic. They tested me with the foods, and found that, yes indeed, I have developed more food sensitivities! Soon I will be eating tree bark....No, you don't have pests eating your trees...it is your starving neighbor!!
Since my body is continuing to develop sensitivities, they have advised me to go on a rotation diet. With this diet, you rotate foods every four days so your body won't be as likely to develop sensitivities. (I only have four foods left so it shouldn't be too hard!) I also starting taking food allergy drops. The drops are suppose to desensitize the body to foods so, over time, foods can be reintroduced. Unfortunately, I had a bad reaction to one of the food allergy drops today. I will take the drops my body can tolerate and give my immune system time to get stronger.
With all of the new awareness of how foods are effecting me. Today, the doctor suggested I stay one more week to further "tweak" things for my food allergies. As you can imagine, I wasn't fond of that idea! After a few tears, and looking at all the options, I am still planning to come home. They are willing to work with me through phone and e-mail, and send me new things to try as I need them. I think getting home, and giving my body a break will be good medicine in itself!
Push Update: I have had moderately strong reactions this week with fever and body aches, but by morning I feel good and I am ready for the day! I only have two more to go!
I must share something that just happened as I have been writing. A patient, who is in a wheelchair, just walked with a walker. The whole clinic broke out in applause! How incredible!
I will write tomorrow. My last blog from Reno...stay tuned!
Love to all!
Ronda
Monday, May 19, 2008
But You Don't Look Sick
Hello everyone!
It is my sixth week, and I only have four more days of treatment! It really is hard to believe. I really get to go home on Friday!! The mention of home has never been more sweet to me!! How I have taken so many things for granted....the sound of my children's voices, the comfort of being with my husband, the ability to control my own schedule (without needles involved!), to clean my own house (am I really saying this?), to sleep in my own bed. I am so excited to get home. It is the same feeling I had as a child waiting for Christmas! It just can't come fast enough!
It has been an incredible six weeks. Infact, life changing! I will miss the wonderful staff at the clinic. They really do care, and they have been so supportive. I will also miss the patients. I have met some wonderful people. They come from all walks of life, and from many different places. However, we all share one thing...the loss of health, and the road to recovery. They have had very long roads, and I have been inspired by their stories. Most of the patients are professional men and women (nuclear engineer, mortgage banker, teacher, attorney, school administrator, full-time moms) who are now disabled and unable to work because of lyme disease. They have all been through traditional therapies, and have come here seeking hope. It has been interesting to see the similarities in our symptoms and stories. It is affirming and comforting.
Of course, we have had many conversations as we have watched our IV bottles drip. We haven't quite solved all of the world's problems, but I will get back to you on that one. I think we are close! Of all the conversations we have had, there is one conversation that has not left me, and I want to share it with you. Most of us have been told at one time or another, "But you don't look sick." We have talked about how hard it is to explain why one moment you feel fairly well, and the next moment you feel so fatigued you have to go to bed. Lyme disease (as well as many other chronic diseases,) is so different than having the flu or a cold. When you have an acute infection, you stop your life for a few days (unless you are a mommy!), you have that "sick" look and you go to bed. Within a few days, you feel better and resume your life. With lyme disease, you never know what you are going to get from day-to-day or even hour-to-hour.
There is an article that was written by a woman who has lupus about this very topic. Her article is called "But You Don't Look Sick...The Spoon Theory." In this article, she quantifies the energy to complete task and live life into spoonfuls. A patient may wake up with six spoonfuls of energy/strength one day, and two the next. As one task is completed, (such as showering) one spoonful of energy is taken away. The trick is you must plan your entire day and all the things to be done, and you never know how many spoons you have for the day...but when they are gone, they are gone.
The article and conversation with other patients has really helped me understand my own body. I was always frustrated, and never understood how I could feel okay when I woke up and ready to collapse a few hours later. I just never knew if I would make it until 11:00AM, 2:00 PM or 5:30PM. This visual picture has given me a better understanding, and helped me to be more patient with my situation. Of course, I am hoping for and looking forward to the day when I will wake up with enough spoons to get me through the entire day, but until then, I will appreciate every spoon I get!
This article is very good, and may help you understand anyone in your life who has a chronic illness. If you are interested in reading it, you can go to www.butyoudontlooksick.com, and click on The Spoon Theory.
I am off to get my push. By the way, Friday's reaction was mild, but I had less energy over the weekend. Feeling better today. I must have a few more spoons today!
Love to all!
Ronda
It is my sixth week, and I only have four more days of treatment! It really is hard to believe. I really get to go home on Friday!! The mention of home has never been more sweet to me!! How I have taken so many things for granted....the sound of my children's voices, the comfort of being with my husband, the ability to control my own schedule (without needles involved!), to clean my own house (am I really saying this?), to sleep in my own bed. I am so excited to get home. It is the same feeling I had as a child waiting for Christmas! It just can't come fast enough!
It has been an incredible six weeks. Infact, life changing! I will miss the wonderful staff at the clinic. They really do care, and they have been so supportive. I will also miss the patients. I have met some wonderful people. They come from all walks of life, and from many different places. However, we all share one thing...the loss of health, and the road to recovery. They have had very long roads, and I have been inspired by their stories. Most of the patients are professional men and women (nuclear engineer, mortgage banker, teacher, attorney, school administrator, full-time moms) who are now disabled and unable to work because of lyme disease. They have all been through traditional therapies, and have come here seeking hope. It has been interesting to see the similarities in our symptoms and stories. It is affirming and comforting.
Of course, we have had many conversations as we have watched our IV bottles drip. We haven't quite solved all of the world's problems, but I will get back to you on that one. I think we are close! Of all the conversations we have had, there is one conversation that has not left me, and I want to share it with you. Most of us have been told at one time or another, "But you don't look sick." We have talked about how hard it is to explain why one moment you feel fairly well, and the next moment you feel so fatigued you have to go to bed. Lyme disease (as well as many other chronic diseases,) is so different than having the flu or a cold. When you have an acute infection, you stop your life for a few days (unless you are a mommy!), you have that "sick" look and you go to bed. Within a few days, you feel better and resume your life. With lyme disease, you never know what you are going to get from day-to-day or even hour-to-hour.
There is an article that was written by a woman who has lupus about this very topic. Her article is called "But You Don't Look Sick...The Spoon Theory." In this article, she quantifies the energy to complete task and live life into spoonfuls. A patient may wake up with six spoonfuls of energy/strength one day, and two the next. As one task is completed, (such as showering) one spoonful of energy is taken away. The trick is you must plan your entire day and all the things to be done, and you never know how many spoons you have for the day...but when they are gone, they are gone.
The article and conversation with other patients has really helped me understand my own body. I was always frustrated, and never understood how I could feel okay when I woke up and ready to collapse a few hours later. I just never knew if I would make it until 11:00AM, 2:00 PM or 5:30PM. This visual picture has given me a better understanding, and helped me to be more patient with my situation. Of course, I am hoping for and looking forward to the day when I will wake up with enough spoons to get me through the entire day, but until then, I will appreciate every spoon I get!
This article is very good, and may help you understand anyone in your life who has a chronic illness. If you are interested in reading it, you can go to www.butyoudontlooksick.com, and click on The Spoon Theory.
I am off to get my push. By the way, Friday's reaction was mild, but I had less energy over the weekend. Feeling better today. I must have a few more spoons today!
Love to all!
Ronda
Friday, May 16, 2008
5th Week Down, and Counting....
I have officially finished my fifth week!! I will be home one week from today! I am getting very excited. I cannot wait to see my family and friends!! The end of this "stent" of treatment is in sight! I am feeling so much better. I am ready to come home! I still have work to do, but the improvement I have seen is so encouraging. I am headed in the right direction. I have not felt any numbness and very little fibromyalgia pain this week. Also, my energy level (fatigue) continues to be so much better. They checked my central nervous system (through acupuncture points), and it is greatly improved as well!! The doctor looked at me and said, "You won't be in a wheelchair anytime soon." I am so thrilled to know my body is healing!! Next week, they will look at my blood again (under the microscope). I am very hopeful; I will see an improvement.
This week has been full of more test, treatments and dr.'s appointments. My gastrointestinal tract is still of concern...not much improvement, yet. I had a gastrogram on Thurs. I had to swallow a pill, and it transported information to a receiver about the ph (and other info) of my stomach and intestines. It was an interesting test! I will get the results on Monday. I'll let you know what I learn.
I have also started colonic hydrotherapy treatments. Yes, it is a fancy name for what you are thinking! (I told you I am desperate to get better!) With this treatment, they were able to place probiotics (the good guys) directly into my large intestine. I am cheering them on!! I have also started taking Nystatin to kill the candida, and a few herbs to help kill the parasite. If the herbs don't do the trick, they will put me on Flagyl.
Today, I am providing samples to check my hormone levels. (Like I said, they are testing everything!) To complete the test, I have to fill four vials with saliva throughout the day....no foam allowed. It is tricky! The hardest test I have had to complete so far. Who thought spitting could be so challenging!
Push update: I experienced big reactions on Monday and Tuesday. On a scale of 1-10, they were an eight and nine. The good new...I was okay the next morning and felt fine all day! The last time I experienced that big of a reaction, I was very weak and unable to "recover" as quickly. My immune system is getting stronger!! On Wed. and Thurs., I had little reaction. I have asked them to give me a stronger dose today. I enjoyed the break, but I know the bigger reaction means I am getting rid of the bad boys. Hopefully, I will be standing tomorrow!
Since it is Friday, I payed the clinic for all of my treatments this week. Thanks to you and all of the INCREDIBLE gifts we have received, once again, I was able to pay everything IN FULL!! I can't tell you how much your prayers, love and support mean to me. You have so blessed me and my family! Thank you!!!!!!
Love to all!
Ronda
This week has been full of more test, treatments and dr.'s appointments. My gastrointestinal tract is still of concern...not much improvement, yet. I had a gastrogram on Thurs. I had to swallow a pill, and it transported information to a receiver about the ph (and other info) of my stomach and intestines. It was an interesting test! I will get the results on Monday. I'll let you know what I learn.
I have also started colonic hydrotherapy treatments. Yes, it is a fancy name for what you are thinking! (I told you I am desperate to get better!) With this treatment, they were able to place probiotics (the good guys) directly into my large intestine. I am cheering them on!! I have also started taking Nystatin to kill the candida, and a few herbs to help kill the parasite. If the herbs don't do the trick, they will put me on Flagyl.
Today, I am providing samples to check my hormone levels. (Like I said, they are testing everything!) To complete the test, I have to fill four vials with saliva throughout the day....no foam allowed. It is tricky! The hardest test I have had to complete so far. Who thought spitting could be so challenging!
Push update: I experienced big reactions on Monday and Tuesday. On a scale of 1-10, they were an eight and nine. The good new...I was okay the next morning and felt fine all day! The last time I experienced that big of a reaction, I was very weak and unable to "recover" as quickly. My immune system is getting stronger!! On Wed. and Thurs., I had little reaction. I have asked them to give me a stronger dose today. I enjoyed the break, but I know the bigger reaction means I am getting rid of the bad boys. Hopefully, I will be standing tomorrow!
Since it is Friday, I payed the clinic for all of my treatments this week. Thanks to you and all of the INCREDIBLE gifts we have received, once again, I was able to pay everything IN FULL!! I can't tell you how much your prayers, love and support mean to me. You have so blessed me and my family! Thank you!!!!!!
Love to all!
Ronda
Monday, May 12, 2008
A Mother's Day to Remember
Mother's Day...I must admit; I was not looking forward to it. I avoided thinking about it, and when I did think about my children and Mother's Day, I could tell a good cry was brewing. To celebrate the day, my sweet mother (who flew home on Saturday) left me a beautiful bouquet of flowers, and my wonderful husband shipped me Mother's Day cards and all of the sweet letters each of you have sent to our home while I have been in treatment. I read the cards from my husband and children, and read each of the cards and letters you sent to me! I felt very loved and so appreciate all of the encouraging words and prayers!! Thank you!
After enjoying my cards, things became very quiet. Then, came the tears. I was a pile of tears. The emotion was a good relief, but then, they became an avenue for my fears. As a mom, my biggest fear is not being there to care for and protect me children. My thought was, " I am not there for them today. Can I guarantee I will be there in the future?" I was griped with fear and all of the "what if's" that come with the unknown of the future. All of the sudden, the phone rang, and it was my friend, Laurel. She was just calling to say, "Happy Mother's Day," and check on me. I tried to fight back the emotion, but when I heard her voice, the tears flowed. She listened to me cry (it's not the first time she has done this!), and she said, "Ronda, Fear is F-False, E-Evidence, A-Appearing, R-Real. I knew she was right. I needed to live in the "reality" of today. I was trying to worry about tomorrow and a future I can't predict or control. We finished our conversation and then, my friend Debbie called. She was calling to see if I received a package she had sent several days before (the post office is also hard to predict.... I had not received it), and she encouraged me to get out and do something fun.
When I hung up the phone, I decided to get out of my four walls and drive out to Lake Tahoe. I needed a change of scenery. On the way out, I stopped by the office to check on her package. They had it! I started to open it (the kids inside of me couldn't wait to open it), and then thought, "No, I'll wait until I get to Tahoe." I asked a woman in the office about the best way to get to Tahoe, and she was kind enough to give me pointers. Then, she said,"You should go to Jake's for dinner. They have great food." I thought, "I wish.... but with all of my food allergies, I will have to stick with the cashews and sunflower seeds I packed!"
The ride to Lake Tahoe was incredible! I felt like I was being drawn into a postcard! It was beautiful, and a sense of adventure was building inside of me. Being surrounded by the beauty of nature and the mountains, I was being reminded that God is "walking" with me. I felt such a peace and sense of His presence! I couldn't wait to see the Lake.
When I arrived in Tahoe, the first order of business was to find a bathroom! The Lake had to wait! I entered a little downtown area and decided not to challenge my non-existent parallel parking abilities. I needed a bathroom with regular parking! I turned down a small, nondescript street, toward the lake, and right in front of me was a huge sign that said, "Jake's Restaurant." I started to laugh. I thought, "What are the chances that I would turn down the one street in all of Tahoe that leads into Jake's parking lot!" My next thought was, "God, am I suppose to eat here?" I was wearing a t-shirt, jeans and tennis shoes , and nothing had been done in the make-up or hair department. I was not planning on seeing or dining with anyone!
I saw that Jake's was connected to a small indoor shopping mall. Shopping?? Now that's what the doctor ordered! I can shop in any condition! I went inside the mall to find a bathroom and souvenirs for Chris and the kids. I walked into a clothing store, and quickly realized it was not a souvenir shop. It was a woman's clothing store. I turned to leave, and then, I saw a "Sales" sign. Anyone that knows me well, knows I cannot turn down a good sale!! I looked through the sales rack and found a cute black top. It was 70% off! What a bargain! The sales lady asked if I would like to try it on....I couldn't offend her! I tried it on, and it fit and looked great! I thought, "Maybe I am suppose to have a Mother's Day dinner and I need to get dressed for the occasion! All of the sudden, I felt like I was in a reality show where the girl is taken to get fitted in a new outfit before an evening out! I was starting to get into it! I thought, "God I know you are walking with me, but are you also taking me out for the evening?" " Do you do that kind of thing!??"
The top was cute and I was ready to buy it, but I looked down and the tennis shoes where not working for me! I couldn't wear the top with tennis shoes! Conveniently enough, as I came out of the dressing room, I spotted a display of shoes across the store. I wandered over to shoes and my practical side was shouting..."This is crazy! What am I doing?" I looked at the shoes, and found the cutest pair of strappy sandals. Strappy sandals are adorable, but on other people. I have very wide feet, and strappy sandals don't work for me! I picked them up and put them down again (several times!). Finally, I thought, "Just try them on, and get it over with!" I tried the pair on display, and they fit perfectly! I loved them! The sales lady said, "Since these are the display pair, I will give you 10% off. She was speaking my language! I walked out of there with an outfit for dinner! I changed into my outfit and rubbed chapstick and lipliner together for my lipstick. I was ready for dinner. I said, "Okay God, if you are orchestrating an evening for me, there has to be something I can eat on Jake's menu" I walked into the restaurant no longer feeling like the "patient" but a beautiful woman going to dinner.
I was seated next to a window looking out over the lake and the mountains. It was incredible! I feasted on sesame encrusted bass, jasmine rice and veggies. It was perfect. I was soaking in the moment when my phone rang. It was my friend Debbie; the friend who sent me the package. I told her about my "evening out," and told her I finally received her package. She said, "You have to open it now." I had it in my purse so, I pulled it out and opened it up. In the package was a beautiful silver, handmade necklace. Attached to the necklace was a tag that said Matthew 6:26. The verses read, "Look at the birds of the air, they do not sow, neither do they reap, nor gather into barns and yet your heavenly Father feeds them. Are you not worth much more than they, and why are you anxious about clothing? Observe how the lilies of the field grow; they do not toil nor do they spin, yet I say to you that even Solomon in all of His glory did not clothe himself like one of these. But if God so arrays the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more do so for you, O men of little faith? Do not be anxious then saying, "What shall we eat? or what shall we drink or with what shall we clothe ourselves.....Therefore, do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."
Wow!! I was speechless! I was crying again but this time they were tears of joy. Yes, God was feeding me and clothing me. How incredible that he knows me (He knows all of us!), and cares for me! I can trust him with all of my tomorrows. He knows all of my days! I will never forget that evening, and the necklace will help me remember. The necklace is an oval pendant, and on the pendent, is a small bird with a crown on its head. It is beautiful and a perfect reminder! Thank you Debbie!
After dinner, I found a quiet place on the lake to reflect and enjoy. It was very peaceful! I drove home with a new peace and deeper understanding that God is with me, and knows my needs (as well as my family's needs). Nothing is out of His hands.
Love to all!
Ronda
After enjoying my cards, things became very quiet. Then, came the tears. I was a pile of tears. The emotion was a good relief, but then, they became an avenue for my fears. As a mom, my biggest fear is not being there to care for and protect me children. My thought was, " I am not there for them today. Can I guarantee I will be there in the future?" I was griped with fear and all of the "what if's" that come with the unknown of the future. All of the sudden, the phone rang, and it was my friend, Laurel. She was just calling to say, "Happy Mother's Day," and check on me. I tried to fight back the emotion, but when I heard her voice, the tears flowed. She listened to me cry (it's not the first time she has done this!), and she said, "Ronda, Fear is F-False, E-Evidence, A-Appearing, R-Real. I knew she was right. I needed to live in the "reality" of today. I was trying to worry about tomorrow and a future I can't predict or control. We finished our conversation and then, my friend Debbie called. She was calling to see if I received a package she had sent several days before (the post office is also hard to predict.... I had not received it), and she encouraged me to get out and do something fun.
When I hung up the phone, I decided to get out of my four walls and drive out to Lake Tahoe. I needed a change of scenery. On the way out, I stopped by the office to check on her package. They had it! I started to open it (the kids inside of me couldn't wait to open it), and then thought, "No, I'll wait until I get to Tahoe." I asked a woman in the office about the best way to get to Tahoe, and she was kind enough to give me pointers. Then, she said,"You should go to Jake's for dinner. They have great food." I thought, "I wish.... but with all of my food allergies, I will have to stick with the cashews and sunflower seeds I packed!"
The ride to Lake Tahoe was incredible! I felt like I was being drawn into a postcard! It was beautiful, and a sense of adventure was building inside of me. Being surrounded by the beauty of nature and the mountains, I was being reminded that God is "walking" with me. I felt such a peace and sense of His presence! I couldn't wait to see the Lake.
When I arrived in Tahoe, the first order of business was to find a bathroom! The Lake had to wait! I entered a little downtown area and decided not to challenge my non-existent parallel parking abilities. I needed a bathroom with regular parking! I turned down a small, nondescript street, toward the lake, and right in front of me was a huge sign that said, "Jake's Restaurant." I started to laugh. I thought, "What are the chances that I would turn down the one street in all of Tahoe that leads into Jake's parking lot!" My next thought was, "God, am I suppose to eat here?" I was wearing a t-shirt, jeans and tennis shoes , and nothing had been done in the make-up or hair department. I was not planning on seeing or dining with anyone!
I saw that Jake's was connected to a small indoor shopping mall. Shopping?? Now that's what the doctor ordered! I can shop in any condition! I went inside the mall to find a bathroom and souvenirs for Chris and the kids. I walked into a clothing store, and quickly realized it was not a souvenir shop. It was a woman's clothing store. I turned to leave, and then, I saw a "Sales" sign. Anyone that knows me well, knows I cannot turn down a good sale!! I looked through the sales rack and found a cute black top. It was 70% off! What a bargain! The sales lady asked if I would like to try it on....I couldn't offend her! I tried it on, and it fit and looked great! I thought, "Maybe I am suppose to have a Mother's Day dinner and I need to get dressed for the occasion! All of the sudden, I felt like I was in a reality show where the girl is taken to get fitted in a new outfit before an evening out! I was starting to get into it! I thought, "God I know you are walking with me, but are you also taking me out for the evening?" " Do you do that kind of thing!??"
The top was cute and I was ready to buy it, but I looked down and the tennis shoes where not working for me! I couldn't wear the top with tennis shoes! Conveniently enough, as I came out of the dressing room, I spotted a display of shoes across the store. I wandered over to shoes and my practical side was shouting..."This is crazy! What am I doing?" I looked at the shoes, and found the cutest pair of strappy sandals. Strappy sandals are adorable, but on other people. I have very wide feet, and strappy sandals don't work for me! I picked them up and put them down again (several times!). Finally, I thought, "Just try them on, and get it over with!" I tried the pair on display, and they fit perfectly! I loved them! The sales lady said, "Since these are the display pair, I will give you 10% off. She was speaking my language! I walked out of there with an outfit for dinner! I changed into my outfit and rubbed chapstick and lipliner together for my lipstick. I was ready for dinner. I said, "Okay God, if you are orchestrating an evening for me, there has to be something I can eat on Jake's menu" I walked into the restaurant no longer feeling like the "patient" but a beautiful woman going to dinner.
I was seated next to a window looking out over the lake and the mountains. It was incredible! I feasted on sesame encrusted bass, jasmine rice and veggies. It was perfect. I was soaking in the moment when my phone rang. It was my friend Debbie; the friend who sent me the package. I told her about my "evening out," and told her I finally received her package. She said, "You have to open it now." I had it in my purse so, I pulled it out and opened it up. In the package was a beautiful silver, handmade necklace. Attached to the necklace was a tag that said Matthew 6:26. The verses read, "Look at the birds of the air, they do not sow, neither do they reap, nor gather into barns and yet your heavenly Father feeds them. Are you not worth much more than they, and why are you anxious about clothing? Observe how the lilies of the field grow; they do not toil nor do they spin, yet I say to you that even Solomon in all of His glory did not clothe himself like one of these. But if God so arrays the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more do so for you, O men of little faith? Do not be anxious then saying, "What shall we eat? or what shall we drink or with what shall we clothe ourselves.....Therefore, do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."
Wow!! I was speechless! I was crying again but this time they were tears of joy. Yes, God was feeding me and clothing me. How incredible that he knows me (He knows all of us!), and cares for me! I can trust him with all of my tomorrows. He knows all of my days! I will never forget that evening, and the necklace will help me remember. The necklace is an oval pendant, and on the pendent, is a small bird with a crown on its head. It is beautiful and a perfect reminder! Thank you Debbie!
After dinner, I found a quiet place on the lake to reflect and enjoy. It was very peaceful! I drove home with a new peace and deeper understanding that God is with me, and knows my needs (as well as my family's needs). Nothing is out of His hands.
Love to all!
Ronda
Saturday, May 10, 2008
Party Push!
Yesterday turned out to be a rather interesting day. I have fallen into a routine, and feel like I know what to expect at this point. Infact, I have found myself being the old-timer who gives advice to new patients. Well, just when you think you know what to expect....it changes!
I had my usual IV treatment and decided to try something called, lymphatic drainage therapy. I was told it would help with my inner ear pain by draining the lymphnodes (in my neck), and relieving pressure in the ear. As I was having this done, I heard the staff talking about the fact that it was Dr. Fong's Birthday. They were planning to have lunch and cake in his honor, and they were encouraging all of the patients to stay after their treatment to celebrate. I thought, "How nice! This is the most excitement I have seen in quite awhile....why not!"
As we were singing Happy Birthday to Dr. Fong, I started feeling unusually cold. I put on my jacket, and still felt cold. I sat down and covered myself up with a blanket but I only felt colder. Within minutes, I was shaking! Yes! I was having a reaction.....I had not yet received my push, but I was having a reaction. Dr. Fong looked at me and said, "Are you okay?" I felt like saying, "I don't know! You tell me!" The staff piled blankets on me, and they where very caring. Dr. Fong said, "You are controlling the shaking quite well." I just smiled, and said, "Thank you God!" Everyone ate their lunch and watched me shake! What a way to "shake-up" a party! Poor Dr. Fong, he couldn't even celebrate his Birthday without tending to a patient! I heard a few of the new patients saying, "What's wrong with her?" I couldn't talk...I just had to laugh.
It took about 30-40 minutes for the shaking to stop. (By the way, this reaction was still mild compared to the shaking I experienced last week.) Once everything calmed down, the doctor started to check everything in my IV to make sure it wasn't the culprit. They finally decided the lymphatic drainage therapy caused a "delayed" reaction. They said, "The culture can have immature cells that stay in your system, and continue to mature. When I had the lymphatic therapy, it released these cells into my circulatory system and caused a reaction." I don't think I will let anyone come near my lymphnodes for a long time! I was able to drive home after three hours, and stayed in bed the rest of the day.
I woke up this morning feeling good. Infact, I went to the grocery store and took my mom to the airport to fly home this morning, and I have energy to spare! I was completely wiped-out after picking her up from the airport two weeks ago. It is a noticeable difference! It appears, I have turned a corner! I know that I still have concerns to tackle, but I do feel better.
Love to all!
Ronda
I had my usual IV treatment and decided to try something called, lymphatic drainage therapy. I was told it would help with my inner ear pain by draining the lymphnodes (in my neck), and relieving pressure in the ear. As I was having this done, I heard the staff talking about the fact that it was Dr. Fong's Birthday. They were planning to have lunch and cake in his honor, and they were encouraging all of the patients to stay after their treatment to celebrate. I thought, "How nice! This is the most excitement I have seen in quite awhile....why not!"
As we were singing Happy Birthday to Dr. Fong, I started feeling unusually cold. I put on my jacket, and still felt cold. I sat down and covered myself up with a blanket but I only felt colder. Within minutes, I was shaking! Yes! I was having a reaction.....I had not yet received my push, but I was having a reaction. Dr. Fong looked at me and said, "Are you okay?" I felt like saying, "I don't know! You tell me!" The staff piled blankets on me, and they where very caring. Dr. Fong said, "You are controlling the shaking quite well." I just smiled, and said, "Thank you God!" Everyone ate their lunch and watched me shake! What a way to "shake-up" a party! Poor Dr. Fong, he couldn't even celebrate his Birthday without tending to a patient! I heard a few of the new patients saying, "What's wrong with her?" I couldn't talk...I just had to laugh.
It took about 30-40 minutes for the shaking to stop. (By the way, this reaction was still mild compared to the shaking I experienced last week.) Once everything calmed down, the doctor started to check everything in my IV to make sure it wasn't the culprit. They finally decided the lymphatic drainage therapy caused a "delayed" reaction. They said, "The culture can have immature cells that stay in your system, and continue to mature. When I had the lymphatic therapy, it released these cells into my circulatory system and caused a reaction." I don't think I will let anyone come near my lymphnodes for a long time! I was able to drive home after three hours, and stayed in bed the rest of the day.
I woke up this morning feeling good. Infact, I went to the grocery store and took my mom to the airport to fly home this morning, and I have energy to spare! I was completely wiped-out after picking her up from the airport two weeks ago. It is a noticeable difference! It appears, I have turned a corner! I know that I still have concerns to tackle, but I do feel better.
Love to all!
Ronda
Thursday, May 8, 2008
A really good day!
It has been a really good day. I feel stronger than I have felt in a long time. I am really enjoying it! I know that I would not be at this point without all of your encouragement, strength, love, prayers and support. Thank you!
Push update: My reaction to the push last night was fairly mild. I had a low-grade fever for a few hours and a little bit of pain, but it was NOTHING compared to last week at this time! A mild reaction means my immune system is getting stronger....that is a good thing! I am sure they will go up on the concentration again today. I'll let you know how it goes.
As I mentioned weeks ago, one of my concerns is my gastrointestinal tract. I had a complete work-up by a GI doctor last fall, and he could not find anything wrong. My internal medicine doctor thought I could have celiac even though all the tests (including biopsy) were negative. So, I have just assumed I have celiac disease. When I arrived in Reno a few weeks ago, they also did several test. Well, I have received the results of the test, and they have found PLENTY wrong. I have a friend in my intestines. Yes, a parasite! He has made himself at home, and he is wreaking havoc! I am malabsorbing food, and I don't have any of the good bacteria in my gut! I have plenty of the bad ones (including candida) that are out of control, but the good ones have gone MIA! (I have been taking probiotics but there is still no trace of the good guys!)
I have also been diagnosed with food allergies. (Note: my allergist did a skin test, and said, I did not have food allergies. Lesson learned....you should get both a skin and blood test in order to be sure) I am very allergic to milk, eggs, almonds, flaxseed and moderately allergic to beef, and a few other food items. I have been on a gluten-free, candida diet for five months because I suspected a candida issue (as well as possible celiac), and the diet has helped many of my gi symptoms. Although helpful, it is very restrictive, and I was using eggs, almonds and beef to get protein, iron and other nutrients. With this new information, I have been forced me to get rather creative with my diet! I am using olive oil and coconut oil to get more calories, and I have added tofu to get more protein. The Texas girl,who grew up in beef country, is eating tofu!!
I saw the doctor (Dr. Fong) yesterday, and based on my progress and new found problems, he recommended I stay an extra week. It was a hard one to swallow! I have been counting the days until I can come home to be with my family!! Chris and I had a long conversation last night, and we decided to follow the doctor's advice. I am going to continue treatment through May22nd, and I will fly home May 23rd.
You know, I have learned so much about my body since I have been here. I have lyme disease but I also have many other problems that have gone undiagnosed (for a long time) and contributed to my health issues. I am so thankful to get to the bottom of it all! I have not always done the best job of taking care of myself. As a mom, I am usually the last one to take my vitamins, eat right, rest or exercise. Since I have been so ill, my prayer had been, "God please show me what is wrong and how to take care of my body." He is answering my prayer, and I have a new resolve to take care of myself! If you have a healthy body, please take care of it, and appreciate the blessing of health! It truly is a gift...don't abuse it!
Love to all!
Ronda
Push update: My reaction to the push last night was fairly mild. I had a low-grade fever for a few hours and a little bit of pain, but it was NOTHING compared to last week at this time! A mild reaction means my immune system is getting stronger....that is a good thing! I am sure they will go up on the concentration again today. I'll let you know how it goes.
As I mentioned weeks ago, one of my concerns is my gastrointestinal tract. I had a complete work-up by a GI doctor last fall, and he could not find anything wrong. My internal medicine doctor thought I could have celiac even though all the tests (including biopsy) were negative. So, I have just assumed I have celiac disease. When I arrived in Reno a few weeks ago, they also did several test. Well, I have received the results of the test, and they have found PLENTY wrong. I have a friend in my intestines. Yes, a parasite! He has made himself at home, and he is wreaking havoc! I am malabsorbing food, and I don't have any of the good bacteria in my gut! I have plenty of the bad ones (including candida) that are out of control, but the good ones have gone MIA! (I have been taking probiotics but there is still no trace of the good guys!)
I have also been diagnosed with food allergies. (Note: my allergist did a skin test, and said, I did not have food allergies. Lesson learned....you should get both a skin and blood test in order to be sure) I am very allergic to milk, eggs, almonds, flaxseed and moderately allergic to beef, and a few other food items. I have been on a gluten-free, candida diet for five months because I suspected a candida issue (as well as possible celiac), and the diet has helped many of my gi symptoms. Although helpful, it is very restrictive, and I was using eggs, almonds and beef to get protein, iron and other nutrients. With this new information, I have been forced me to get rather creative with my diet! I am using olive oil and coconut oil to get more calories, and I have added tofu to get more protein. The Texas girl,who grew up in beef country, is eating tofu!!
I saw the doctor (Dr. Fong) yesterday, and based on my progress and new found problems, he recommended I stay an extra week. It was a hard one to swallow! I have been counting the days until I can come home to be with my family!! Chris and I had a long conversation last night, and we decided to follow the doctor's advice. I am going to continue treatment through May22nd, and I will fly home May 23rd.
You know, I have learned so much about my body since I have been here. I have lyme disease but I also have many other problems that have gone undiagnosed (for a long time) and contributed to my health issues. I am so thankful to get to the bottom of it all! I have not always done the best job of taking care of myself. As a mom, I am usually the last one to take my vitamins, eat right, rest or exercise. Since I have been so ill, my prayer had been, "God please show me what is wrong and how to take care of my body." He is answering my prayer, and I have a new resolve to take care of myself! If you have a healthy body, please take care of it, and appreciate the blessing of health! It truly is a gift...don't abuse it!
Love to all!
Ronda
Tuesday, May 6, 2008
Hello Everyone!
It is a beautiful day here in Reno! There is a beautiful blue sky that is a perfect backdrop for the mountains! I love the mountains! I can't get enough of them! I heard the latest earthquake report last night. Yesterday, we only had ten earthquakes, and the largest one measured 2.9....a relatively quiet day. It is all about perspective!
I started my fourth week of treatment yesterday, and had my fifth push last night. Driving to the clinic to get my push, I was nervous...I had butterflies in my stomach. It was like driving to a place where you know you are going to get beat-up, and you ask for it. You anticipate the pain. It is like picking your poison...quite convoluted! After they gave me the push, I got in bed and waited for the reaction. I waited and waited and waited.... Finally, about three hours later, I started getting slight chills, a temp of 100F and a small headache. The reaction was very mild. In a crazy way, I was disappointed. Knowing that a reaction means the bad stuff is being killed, I wanted to get more of a reaction. Today, I have asked them to go up on the strength of the push. I will let you know how it goes! Wish me luck!
Although the push was mild, I could not escape some excitement. Before my reaction started, my hand started to swell at the site where they gave me the push. I called the clinic, and they advised me to keep ice on it as well as a homeopathic cream. (They told me swelling is extremely rare...leave it to me!) The swelling was pretty bad but finally, stabilized before I went to bed. It is still swollen but looks much better this morning. I have it wrapped up and will be "nursing it" for awhile.
Many of you have made generous donations to assist with the cost of my medical care, and I am so very thankful to you! I pay the clinic for the services I received during the week each Friday. This week, I will be able to use the gifts I have received to pay for my treatment!! THANK YOU so very much for loving me and supporting me in such a tangible way! I am completely amazed and overwhelmed by your kindness!
Love to all!
Ronda
It is a beautiful day here in Reno! There is a beautiful blue sky that is a perfect backdrop for the mountains! I love the mountains! I can't get enough of them! I heard the latest earthquake report last night. Yesterday, we only had ten earthquakes, and the largest one measured 2.9....a relatively quiet day. It is all about perspective!
I started my fourth week of treatment yesterday, and had my fifth push last night. Driving to the clinic to get my push, I was nervous...I had butterflies in my stomach. It was like driving to a place where you know you are going to get beat-up, and you ask for it. You anticipate the pain. It is like picking your poison...quite convoluted! After they gave me the push, I got in bed and waited for the reaction. I waited and waited and waited.... Finally, about three hours later, I started getting slight chills, a temp of 100F and a small headache. The reaction was very mild. In a crazy way, I was disappointed. Knowing that a reaction means the bad stuff is being killed, I wanted to get more of a reaction. Today, I have asked them to go up on the strength of the push. I will let you know how it goes! Wish me luck!
Although the push was mild, I could not escape some excitement. Before my reaction started, my hand started to swell at the site where they gave me the push. I called the clinic, and they advised me to keep ice on it as well as a homeopathic cream. (They told me swelling is extremely rare...leave it to me!) The swelling was pretty bad but finally, stabilized before I went to bed. It is still swollen but looks much better this morning. I have it wrapped up and will be "nursing it" for awhile.
Many of you have made generous donations to assist with the cost of my medical care, and I am so very thankful to you! I pay the clinic for the services I received during the week each Friday. This week, I will be able to use the gifts I have received to pay for my treatment!! THANK YOU so very much for loving me and supporting me in such a tangible way! I am completely amazed and overwhelmed by your kindness!
Love to all!
Ronda
Saturday, May 3, 2008
Earth, Wind & Fire
Hello Everyone,
Wow! It has certainly been an interesting week, and I am sorry I have not been able to keep you updated. I have been very weak since the last time I wrote, and I have limited computer access. I have been using a computer at the clinic and the business center where I am staying. It seem like "the stars have to line up" for me to find an available computer and feel well enough to write all at the same time.
Reno had two days of very high winds this week....up to 70 miles/ hour. There was a fire about five miles from the clinic and they were having difficulty containing it because of the high winds. Yes! We have it ALL here! Earthquakes, wind and fire.....anyone care to join me in Reno!
As far as treatment, I had my third push on Wednesday. It was another hard one. Within an hour, I began shaking. I was ready for it this time...or so I thought. (I don't think I will ever be completely ready!) Once I started shaking, I began to focus my mind on God's presence, and the shaking didn't completely stop. I was a little confused. I thought, "What's wrong?" I expected my body to calm as it did the day before. I kept focusing, and my body kept shaking. It wasn't nearly as scary or severe as the first one but the reaction was not subsiding. I was puzzled. Was I doing something wrong? Then, the answer came almost as quickly as I could ask the question. There are times God chooses not to remove our pain and discomfort. God is not a genie or a vending machine....we put in the right coinage and get the expected result. Pain has it's purposes, and when I suffer, He is there with me to walk through it. The fact that He didn't take away my pain does not mean He wasn't with me. He walked me through it this time. It was a comfort to know I was not alone. He had me!
When the shaking stopped, my fever started to climb and my head and neck throbbed. (I was told to watch my temp., and not let it get above 105F.) When my temperature reached 104.6F, I decided it was time to do something! I took a fever reducer and it slowly started to come down. I had pain and a temp throughout the night. By the next morning, (Thursday) I was so weak I could hardly lift my head. I managed to get dressed, and when I brushed my teeth, my mouth was filled with blood. It scared me. I went to the clinic and was seen by one of the doctors. They said my reaction was completely within the normal range, and to expect to get weaker before I get stronger. I guess I was just surprised at how weak one can get.
Later in the afternoon, I had my IV therapy, and I had a bad reaction (Yes! I was ready for this day to end!). I started getting a bad headache, numbness in my face, and dizziness. There was a new doctor, Dr. Lee, overseeing the clinic because Dr. Fong (my treating physician) was out of town. Dr. Lee came to check on me, and as we were talking, he randomly said some things to me I will NEVER forget. He said, "When you have lyme disease, you can no longer spend any excess energy on things that don't matter. You must focus your time and energy on your priorities and what is important....you have a limited reserve, and you can't afford to waste any of it. You also can't waste emotional energy on resentment, anger, bitterness or being concerned about what others think of you....this is the silver lining. " After he left, I thought long and hard about what he said. This is how I have desired to live my life, and so often failed. Having lyme disease, I no longer have a choice. He is right, this is a silver lining....I am being forced to live without pettiness, people pleasing (this is a hard one for me!) and things that don't matter. Wow! It will take me a long time to absorb it all.
By the end of Thursday, I realized a decision needed to be made about my daughter. I was too weak to care for her. Grammy is here to help me, but when mommy is in the house, there is no substitute for her. Chris and I decided it was best for him to come and get Raegan so I can completely focus on treatment and rest. It was a very hard decision made with tears, but I know it is the right one. Chris arrived on Friday and he took Raegan back to Virginia ("Vigeena,"as Raegan would say) on Saturday. I talked with them today, and she is happy to be back home in her own bed with all of her toys, family and friends. While Chris was traveling back and forth, my friends, Laurel and Brian invited Seth over for a "two-night" sleep-over! Seth is loving this sleep-over thing! Thanks Laurel and Brian!
This weekend, I am feeling much better, and enjoying a few days without IV's and treatment. Tomorrow, I will be ready to get back to business! I hope each of you have had a wonderful weekend, and blessings in the week to come!
Love,
Ronda
Wow! It has certainly been an interesting week, and I am sorry I have not been able to keep you updated. I have been very weak since the last time I wrote, and I have limited computer access. I have been using a computer at the clinic and the business center where I am staying. It seem like "the stars have to line up" for me to find an available computer and feel well enough to write all at the same time.
Reno had two days of very high winds this week....up to 70 miles/ hour. There was a fire about five miles from the clinic and they were having difficulty containing it because of the high winds. Yes! We have it ALL here! Earthquakes, wind and fire.....anyone care to join me in Reno!
As far as treatment, I had my third push on Wednesday. It was another hard one. Within an hour, I began shaking. I was ready for it this time...or so I thought. (I don't think I will ever be completely ready!) Once I started shaking, I began to focus my mind on God's presence, and the shaking didn't completely stop. I was a little confused. I thought, "What's wrong?" I expected my body to calm as it did the day before. I kept focusing, and my body kept shaking. It wasn't nearly as scary or severe as the first one but the reaction was not subsiding. I was puzzled. Was I doing something wrong? Then, the answer came almost as quickly as I could ask the question. There are times God chooses not to remove our pain and discomfort. God is not a genie or a vending machine....we put in the right coinage and get the expected result. Pain has it's purposes, and when I suffer, He is there with me to walk through it. The fact that He didn't take away my pain does not mean He wasn't with me. He walked me through it this time. It was a comfort to know I was not alone. He had me!
When the shaking stopped, my fever started to climb and my head and neck throbbed. (I was told to watch my temp., and not let it get above 105F.) When my temperature reached 104.6F, I decided it was time to do something! I took a fever reducer and it slowly started to come down. I had pain and a temp throughout the night. By the next morning, (Thursday) I was so weak I could hardly lift my head. I managed to get dressed, and when I brushed my teeth, my mouth was filled with blood. It scared me. I went to the clinic and was seen by one of the doctors. They said my reaction was completely within the normal range, and to expect to get weaker before I get stronger. I guess I was just surprised at how weak one can get.
Later in the afternoon, I had my IV therapy, and I had a bad reaction (Yes! I was ready for this day to end!). I started getting a bad headache, numbness in my face, and dizziness. There was a new doctor, Dr. Lee, overseeing the clinic because Dr. Fong (my treating physician) was out of town. Dr. Lee came to check on me, and as we were talking, he randomly said some things to me I will NEVER forget. He said, "When you have lyme disease, you can no longer spend any excess energy on things that don't matter. You must focus your time and energy on your priorities and what is important....you have a limited reserve, and you can't afford to waste any of it. You also can't waste emotional energy on resentment, anger, bitterness or being concerned about what others think of you....this is the silver lining. " After he left, I thought long and hard about what he said. This is how I have desired to live my life, and so often failed. Having lyme disease, I no longer have a choice. He is right, this is a silver lining....I am being forced to live without pettiness, people pleasing (this is a hard one for me!) and things that don't matter. Wow! It will take me a long time to absorb it all.
By the end of Thursday, I realized a decision needed to be made about my daughter. I was too weak to care for her. Grammy is here to help me, but when mommy is in the house, there is no substitute for her. Chris and I decided it was best for him to come and get Raegan so I can completely focus on treatment and rest. It was a very hard decision made with tears, but I know it is the right one. Chris arrived on Friday and he took Raegan back to Virginia ("Vigeena,"as Raegan would say) on Saturday. I talked with them today, and she is happy to be back home in her own bed with all of her toys, family and friends. While Chris was traveling back and forth, my friends, Laurel and Brian invited Seth over for a "two-night" sleep-over! Seth is loving this sleep-over thing! Thanks Laurel and Brian!
This weekend, I am feeling much better, and enjoying a few days without IV's and treatment. Tomorrow, I will be ready to get back to business! I hope each of you have had a wonderful weekend, and blessings in the week to come!
Love,
Ronda
Thursday, May 1, 2008
Wednesday, April 30, 2008
Shake and Bake!
I had my second push yesterday. I was warned my reaction to this push could be more severe than the first so I was bracing myself. The patients refer to the reaction as "Shake and Bake" because typically you get really cold and you shake... then, you spike a temperature and get very hot. Since I didn't "shake" the first time, I was hoping that would not be one of my symptoms. One hour after I was given the push, it happened. I started shaking...violently. I could not control my body or my breathing. I was gasping and shaking! I was scared, and thought, "I don't know if I can do this!" I was ready to take the medication to stop the reaction. Then, I remembered something one of the nurses told me. He said, "If you are shaking and having difficulty controlling your breathing, meditate...go to a happy place." As a counselor, I know the benefit of relaxation and focusing on a peaceful place so I thought....why not try it. I remembered the beautiful mountain scene God showed me last week so I focused on the beauty of that scene. However, it didn't work. I was still shaking, and I could not slow my breathing. I was getting desperate. Then, I thought..."God is walking with me...I am in His presence." It is that place in my heart where I know God's unconditional love, complete acceptance and forgiveness regardless of my imperfections. A place of love and grace for which I don't need to strive; it doesn't come from my goodness or effort. It is just a gift I have received. When I focused on this place, the shaking INSTANTLY stopped and my breathing was completely controlled. I thought, "This is amazing, but maybe a fluke...this can't be!" It just so happened the TV was on in my room, and Oprah was on..( I really wanted to turn it off because the noise was bothering me but I couldn't get up to turn it off) so I focused on Oprah for a minute and the shaking came back. (Sorry Oprah...you didn't do the trick!!) I went back to that place in my heart...and it stopped again! Each time I focused on something else, the shaking came back. I was a believer! I stayed with what I knew would calm my body. It lasted about an hour. Over the last several years, I have come to know the emotional healing of understanding God's love and grace, but it was amazing to see my physical body respond in such a powerful way! It has had a huge impact on me! I must admit sharing something this personal is a little daunting, but there is not way I could tell you about what happened yesterday without being completely honest about how I got through it. Wow! I am still amazed!
The shakes were followed by fever, headache, ear pain and some body aches. My fever broke about 2:00AM, and I woke up this morning with a normal temperature. I still have the headache but I am being assured it will go away. I did take a pain reliever this morning, but it didn't touch it!
During the hardest part of my reaction last night, Raegan and my mom were in the apartment (but Raegan did not know I was home) having a great time. As I lay there, I could hear her laugh, and it was awesome knowing she is happy and okay. She has such a precious laugh! Once I was able, "Mommy came home," and I tucked her into bed.
I just finished my IV therapy. I am headed home for lunch and plan to take Raegan to the park this afternoon. Then, I will come back to the clinic late this afternoon for my next push. It takes about an hour for the reaction to start so I will have time to get home and get in bed. Again, Raegan will be kept occupied by my mom until I can "come home" to tuck her into bed.
I have been told there was a fundraiser at Foster's Grille last night for me! I am completely overwhelmed and amazed at the generousity and support that has been poured out through friends, family and my community. Thank you to EVERYONE who went to Foster's last night, and, "Thank you" Foster's Grille!
Love,
Ronda
The shakes were followed by fever, headache, ear pain and some body aches. My fever broke about 2:00AM, and I woke up this morning with a normal temperature. I still have the headache but I am being assured it will go away. I did take a pain reliever this morning, but it didn't touch it!
During the hardest part of my reaction last night, Raegan and my mom were in the apartment (but Raegan did not know I was home) having a great time. As I lay there, I could hear her laugh, and it was awesome knowing she is happy and okay. She has such a precious laugh! Once I was able, "Mommy came home," and I tucked her into bed.
I just finished my IV therapy. I am headed home for lunch and plan to take Raegan to the park this afternoon. Then, I will come back to the clinic late this afternoon for my next push. It takes about an hour for the reaction to start so I will have time to get home and get in bed. Again, Raegan will be kept occupied by my mom until I can "come home" to tuck her into bed.
I have been told there was a fundraiser at Foster's Grille last night for me! I am completely overwhelmed and amazed at the generousity and support that has been poured out through friends, family and my community. Thank you to EVERYONE who went to Foster's last night, and, "Thank you" Foster's Grille!
Love,
Ronda
Tuesday, April 29, 2008
I Survived my first PUSH
Hello!
There is so much to write about today! Once again, I am slowly pecking away at the keys with my left hand. I will give it my best shot!
Yesterday, I was awakened at 4:30 AM by another earthquake (4.2). I turned over and went back to sleep! My sleep is so precious these days...not even an earthquake can keep me from trying to get my ZZZ's. Everyone at the clinic is bracing for the "Big One." We were briefed on evacuation procedures at the clinic this morning. I have had several people ask me if I am worried about the earthquakes, and my answer is, " I am concerned but not worried." I am obviously not losing any sleep over it! I know I am where I am suppose to be right now, and there is no reason to fret over something I cannot control. I will leave it to the One who is ultimately in control.
My treatment started a new phase last night. After my IV treatment, they gave me what is affectionately known as "THE PUSH." It is a culture that is given in the vein. The purpose is to elicit a controlled immune response so the body will fight the lyme as well as other viruses. The patient typically feels pain or discomfort in the places the body has been most effected by lyme. It causes flu-like symptoms for three to twenty-four hours. They start with a "weak" push to see how your body will respond, and increase it each day as tolerated. I will have a push M-F for the next three weeks. Yes! Fun to be had by all! I am not looking forward to it but if it will help me get my health back...bring it on!
My first experience with the push was not pleasant but manageable. I stayed at the clinic for the first several hours so they could observe my reaction and see how my body would handle it. There is nothing like having flu-like symptoms with a room full of people to witness it! About an hour after my push, pain started in my neck and radiated through my head. (Amy, I thought about you and have even more empathy for you with your migraines.) I definitely felt it in my inner ear (interestingly enough, I have had pressure/pain in my ears for a year). I also had pain in my lower back that radiated down my legs and into my knees. The right side of my face and ear became slightly numb for awhile (a place I have felt numbness in the past). I was nauseated but able to hold down liquids, and tolerated a cup of applesauce before I went to bed. I had a low grade fever throughout the night and early morning. The headache...well, I still have it.
They have told me how to alleviate symptoms if it becomes too painful or uncomfortable, but the more I can tolerate the symptoms the better. The fever and pain means it is working and when you stop the reaction, you stop the work it is doing in your body. I am trying to keep my eye on the end goal, and not the present discomfort.
Yesterday, as I was being observed at the clinic and I was beginning to feel the pain. Another patient, the one who cried with me over missing my family, came to my side. She leaned down, and looked me right in the eye. All she said was, "How are you?" Those three words were spoken with so much compassion, and "knowing empathy," I started to cry. She rubbed my neck and head for a few minutes, and stayed with me for a long time. She made sure I was okay before she left. What a special lady....I felt as though she was my angel for those few minutes. A reminder that I am not alone. I know I have so much support at home, and it was as if she embodied all the love and support I feel with a human touch.
After she left, I noticed a One Year Bible mixed in with all of the DVD's. (They have a big screen TV with DVDs for us to watch during treatment.) I was so surprised to see a Bible in that location I was compelled to pick it up. I turned to April 28th and read the Proverbs. I don't have the reference or the verse with me right now so I'll try to paraphrase. It talked about the sweetness of empathy from someone who has experienced what you are experiencing. Yes! it was very sweet, and just what I needed.
I just received my second push, and I am beginning to feel it. I will write more later.
Love,
Ronda
There is so much to write about today! Once again, I am slowly pecking away at the keys with my left hand. I will give it my best shot!
Yesterday, I was awakened at 4:30 AM by another earthquake (4.2). I turned over and went back to sleep! My sleep is so precious these days...not even an earthquake can keep me from trying to get my ZZZ's. Everyone at the clinic is bracing for the "Big One." We were briefed on evacuation procedures at the clinic this morning. I have had several people ask me if I am worried about the earthquakes, and my answer is, " I am concerned but not worried." I am obviously not losing any sleep over it! I know I am where I am suppose to be right now, and there is no reason to fret over something I cannot control. I will leave it to the One who is ultimately in control.
My treatment started a new phase last night. After my IV treatment, they gave me what is affectionately known as "THE PUSH." It is a culture that is given in the vein. The purpose is to elicit a controlled immune response so the body will fight the lyme as well as other viruses. The patient typically feels pain or discomfort in the places the body has been most effected by lyme. It causes flu-like symptoms for three to twenty-four hours. They start with a "weak" push to see how your body will respond, and increase it each day as tolerated. I will have a push M-F for the next three weeks. Yes! Fun to be had by all! I am not looking forward to it but if it will help me get my health back...bring it on!
My first experience with the push was not pleasant but manageable. I stayed at the clinic for the first several hours so they could observe my reaction and see how my body would handle it. There is nothing like having flu-like symptoms with a room full of people to witness it! About an hour after my push, pain started in my neck and radiated through my head. (Amy, I thought about you and have even more empathy for you with your migraines.) I definitely felt it in my inner ear (interestingly enough, I have had pressure/pain in my ears for a year). I also had pain in my lower back that radiated down my legs and into my knees. The right side of my face and ear became slightly numb for awhile (a place I have felt numbness in the past). I was nauseated but able to hold down liquids, and tolerated a cup of applesauce before I went to bed. I had a low grade fever throughout the night and early morning. The headache...well, I still have it.
They have told me how to alleviate symptoms if it becomes too painful or uncomfortable, but the more I can tolerate the symptoms the better. The fever and pain means it is working and when you stop the reaction, you stop the work it is doing in your body. I am trying to keep my eye on the end goal, and not the present discomfort.
Yesterday, as I was being observed at the clinic and I was beginning to feel the pain. Another patient, the one who cried with me over missing my family, came to my side. She leaned down, and looked me right in the eye. All she said was, "How are you?" Those three words were spoken with so much compassion, and "knowing empathy," I started to cry. She rubbed my neck and head for a few minutes, and stayed with me for a long time. She made sure I was okay before she left. What a special lady....I felt as though she was my angel for those few minutes. A reminder that I am not alone. I know I have so much support at home, and it was as if she embodied all the love and support I feel with a human touch.
After she left, I noticed a One Year Bible mixed in with all of the DVD's. (They have a big screen TV with DVDs for us to watch during treatment.) I was so surprised to see a Bible in that location I was compelled to pick it up. I turned to April 28th and read the Proverbs. I don't have the reference or the verse with me right now so I'll try to paraphrase. It talked about the sweetness of empathy from someone who has experienced what you are experiencing. Yes! it was very sweet, and just what I needed.
I just received my second push, and I am beginning to feel it. I will write more later.
Love,
Ronda
Friday, April 25, 2008
April 25th, Fire in the hole!
Hello!
Yesterday, I finished treatment, and went to pick up my sweet Raegan. I have so many fluids going into me....I am making frequent trips to the restroom these days. So, before I went into Raegan's class, I stopped at the restroom next to her class. All of the sudden I heard a loud noise and the building began to shake. Then, I heard someone say, "Fire in the Hole!" I was panicked, and I was stuck...no chance of going anywhere for a few minutes. I thought, "who in the world is playing with explosives at a childcare center!" I thought, "is this a bomb....a joke....a dream!" I made record time finishing my task in the bathroom and ran into Raegan's classroom. All of the children where hunched down on their knees with their heads tucked into their tummies under tables! I know the blood drained out of my face, and I yelled, "What is going on?" "Who shouted, 'Fire in the Hole.' " The teachers seemed so calm. I couldn't understand. They quickly explained to me that what I had just experienced was an earthquake, and what I heard was "rabbit in the hole." This is their "phrase" to alert the children and staff to start their earthquake drill. The children tuck their heads and arms under their bodies and pretend to be rabbits under tables! The children where calm, and they where fine being rabbits! I, on the other hand, was ready to hop out of their as quickly as my feet would carry me! I was told their have been 30 earthquakes in this area just this week. Thankfully, I have only felt one of them! My first earthquake and hopefully, my last. In my mind, this is a good reason to live on the east coast! Home sweet home!
I tried a homeopathic sleeping aid last night, and it didn't touch me! Sleep was not to be had. I am looking forward to a good night sleep tonight with my precious Lunesta. Even though I am sleep deprived, I feel better today than I did before I started treatment! Also, the muscle pain is still minimal, and I am not experiencing the cardiac symptoms as frequently. My heart rate seldom races, and I don't feel as dizzy.
Today, my IV is a detox treatment. The other treatments this week have been infusions to kill the lyme and viruses in my body. The goal is to help my body get rid of the toxins let from my other treatments.
My mom arrives tomorrow, and Raegan and I are very excited to see her. Raegan has been counting the days until she gets to see her Grammy.
I am very homesick and counting the days until I can be home with my whole family and friends!
Have a great weekend!
Ronda
Yesterday, I finished treatment, and went to pick up my sweet Raegan. I have so many fluids going into me....I am making frequent trips to the restroom these days. So, before I went into Raegan's class, I stopped at the restroom next to her class. All of the sudden I heard a loud noise and the building began to shake. Then, I heard someone say, "Fire in the Hole!" I was panicked, and I was stuck...no chance of going anywhere for a few minutes. I thought, "who in the world is playing with explosives at a childcare center!" I thought, "is this a bomb....a joke....a dream!" I made record time finishing my task in the bathroom and ran into Raegan's classroom. All of the children where hunched down on their knees with their heads tucked into their tummies under tables! I know the blood drained out of my face, and I yelled, "What is going on?" "Who shouted, 'Fire in the Hole.' " The teachers seemed so calm. I couldn't understand. They quickly explained to me that what I had just experienced was an earthquake, and what I heard was "rabbit in the hole." This is their "phrase" to alert the children and staff to start their earthquake drill. The children tuck their heads and arms under their bodies and pretend to be rabbits under tables! The children where calm, and they where fine being rabbits! I, on the other hand, was ready to hop out of their as quickly as my feet would carry me! I was told their have been 30 earthquakes in this area just this week. Thankfully, I have only felt one of them! My first earthquake and hopefully, my last. In my mind, this is a good reason to live on the east coast! Home sweet home!
I tried a homeopathic sleeping aid last night, and it didn't touch me! Sleep was not to be had. I am looking forward to a good night sleep tonight with my precious Lunesta. Even though I am sleep deprived, I feel better today than I did before I started treatment! Also, the muscle pain is still minimal, and I am not experiencing the cardiac symptoms as frequently. My heart rate seldom races, and I don't feel as dizzy.
Today, my IV is a detox treatment. The other treatments this week have been infusions to kill the lyme and viruses in my body. The goal is to help my body get rid of the toxins let from my other treatments.
My mom arrives tomorrow, and Raegan and I are very excited to see her. Raegan has been counting the days until she gets to see her Grammy.
I am very homesick and counting the days until I can be home with my whole family and friends!
Have a great weekend!
Ronda
Thursday, April 24, 2008
April 24th...the scenic route
Hello everyone!
When I picked up Raegan last night, she was all smiles, and she went over to a little girl (a new friend) and hugged her goodbye. I was happy and relieved that she adapted so well, and made a new friend. As she left, she waived, and said, "See you all tomorrow!" I guess that answers my question about her comfort level, and it will be easier to drop her off tomorrow.
As we drove away, I made a wrong turn (not surprising...directions are not my strength!) and decided to turn down another road in order to turn around. As I made the turn, all of the sudden, in front of me was one of the most beautiful scenes I have ever seen. I saw beautiful snow capped mountains and the clouds were hanging very low around the peaks. The sun was peeking through the clouds and the light was reflecting off of the hills around the mountains. It took my breath away! It was almost as if God had said, "take this turn...I have something to show you!" I felt like I had stumbled onto one of the most beautiful spots in Reno! I said out loud to Raegan. "Look at the beautiful mountains God made!" She said, "Mommy God isn't here." I replied, "Raegan, God is always with us." In her sweet four-year-old way she said, "I don't see him.....did he take a walk?" I laughed for awhile, and then, I thought....yes, the same God who made these mountains is walking with me each and every moment. He doesn't miss anything, and He will be with me tomorrow and the next. What an amazing thing! It gives me such peace. Finally, I saw a sign that indicated I would eventually get to the road I needed so I stayed with the detour route and just took in the beauty! I may be taking this detour often.
I started feeling more energy Tuesday evening after treatment, and I still feel better today. The muscle pain has improved immensley! I know I still have a long road, but I am so grateful for the good days!
Thank you again for all of your prayers and support!
Suzanne, tell Presley, "Seth's mom really appreciates that he is such a good friend to Seth!"
Jane, thanks for your words of encouragement! I hope to meet you soon!
"Twice Blessed," thanks for encouraging me to start this blog! Yes, several of my friends are starting fundraisers to help me cover my expenses! Pretty incredible!! If you want more info about it, you can contact Kathy at kathydrago@yahoo.com or Amy at amylynnlittle@comcast.net.
Love to all!
Ronda
When I picked up Raegan last night, she was all smiles, and she went over to a little girl (a new friend) and hugged her goodbye. I was happy and relieved that she adapted so well, and made a new friend. As she left, she waived, and said, "See you all tomorrow!" I guess that answers my question about her comfort level, and it will be easier to drop her off tomorrow.
As we drove away, I made a wrong turn (not surprising...directions are not my strength!) and decided to turn down another road in order to turn around. As I made the turn, all of the sudden, in front of me was one of the most beautiful scenes I have ever seen. I saw beautiful snow capped mountains and the clouds were hanging very low around the peaks. The sun was peeking through the clouds and the light was reflecting off of the hills around the mountains. It took my breath away! It was almost as if God had said, "take this turn...I have something to show you!" I felt like I had stumbled onto one of the most beautiful spots in Reno! I said out loud to Raegan. "Look at the beautiful mountains God made!" She said, "Mommy God isn't here." I replied, "Raegan, God is always with us." In her sweet four-year-old way she said, "I don't see him.....did he take a walk?" I laughed for awhile, and then, I thought....yes, the same God who made these mountains is walking with me each and every moment. He doesn't miss anything, and He will be with me tomorrow and the next. What an amazing thing! It gives me such peace. Finally, I saw a sign that indicated I would eventually get to the road I needed so I stayed with the detour route and just took in the beauty! I may be taking this detour often.
I started feeling more energy Tuesday evening after treatment, and I still feel better today. The muscle pain has improved immensley! I know I still have a long road, but I am so grateful for the good days!
Thank you again for all of your prayers and support!
Suzanne, tell Presley, "Seth's mom really appreciates that he is such a good friend to Seth!"
Jane, thanks for your words of encouragement! I hope to meet you soon!
"Twice Blessed," thanks for encouraging me to start this blog! Yes, several of my friends are starting fundraisers to help me cover my expenses! Pretty incredible!! If you want more info about it, you can contact Kathy at kathydrago@yahoo.com or Amy at amylynnlittle@comcast.net.
Love to all!
Ronda
Wednesday, April 23, 2008
Something Stinks!
Yesterday, as I was getting my treatment, I began to smell a foul odor. I thought, "where in the world is that odor coming from?" The odor became so strong I could taste it in my mouth. I was puzzled, and felt sorry for whoever or from wherever it was coming. Over time, I got use to the odor and did not notice it. I was hooked up for five hours...so I had some time to adjust to the unpleasant smell.
My friend and Raegan picked me up from the clinic in the late afternoon, and as soon as I got in the car, Becki had a very strange look on her face. It hit me....." I stink!" I started laughing and asked her, "Do I stink?" She tried to be diplomatic, and finally, she said, "Yes, you smell like....I have no idea what you smell like, but you definitely stink!" We rolled down the windows and laughed all the way home. The smell that haunted me all day was coming from me!
Today, the first thing I did was to ask the doctor and staff why I permeated such an odor and why no one told me! I guess they get use to the stinch...thank God for nurses that have a strong stomach. The doctor told me the byproduct of the infusion along with the toxins my body is releasing caused the odor. Maybe, we can stink the lyme out! Anyway, the laugh was good medicine for me!
I am finishing up treatment, and going to pick up Raegan from her first day of childcare. I am hoping and praying she will greet me with smiles, and had a fun day with new friends.
Love to all!
Ronda
P.S. My sleeping appears to be better. However, Raegan didn't sleep much last night. Please pray she sleeps too...so mommy can sleep.
My friend and Raegan picked me up from the clinic in the late afternoon, and as soon as I got in the car, Becki had a very strange look on her face. It hit me....." I stink!" I started laughing and asked her, "Do I stink?" She tried to be diplomatic, and finally, she said, "Yes, you smell like....I have no idea what you smell like, but you definitely stink!" We rolled down the windows and laughed all the way home. The smell that haunted me all day was coming from me!
Today, the first thing I did was to ask the doctor and staff why I permeated such an odor and why no one told me! I guess they get use to the stinch...thank God for nurses that have a strong stomach. The doctor told me the byproduct of the infusion along with the toxins my body is releasing caused the odor. Maybe, we can stink the lyme out! Anyway, the laugh was good medicine for me!
I am finishing up treatment, and going to pick up Raegan from her first day of childcare. I am hoping and praying she will greet me with smiles, and had a fun day with new friends.
Love to all!
Ronda
P.S. My sleeping appears to be better. However, Raegan didn't sleep much last night. Please pray she sleeps too...so mommy can sleep.
Tuesday, April 22, 2008
Tuesday, April 22nd
Hello!
I have one more hour of infusion, and I will be done for the day. The IV is in my right arm so I am typing with my left hand. I can barely type with two good hands so this should be interesting....
Some of my blood work came back today, and I found out I have Epstein Bar. It is a virus that can also cause fatigue as well as other symptoms. The IV infusions I am taking should help treat this as well as the lyme.
We are still awaiting the results of many more test. I am looking forward to getting it all back and being able to see the full picture.
Raegan and I are having a great time with Becki (my friend who flew out to help me with Raegan)! She has been such an incredible help to me! She is a teacher and loves preschoolers. She and Raegan bonded very quickly,and they are having a wonderful time! She leaves to go back to her husband and two beautiful girls in the morning. Raegan & I are truly going to miss her!
Raegan will be at a daycare center, for the next three days, while I am in treatment. She is very excited to go play with "friends." I think the social interaction will be very good for her. Then, my mom, "Grammy" will be here for the next two weeks. We are excited to see her, and grateful she can come and help me.
I had a great night sleep last night! I almost forgot what it was like to sleep more than a few hours at a time. They started me on a new sleeping aid that seems to agree with me!!! Hopefully, the sleep will continue.
My left hand is getting tired....
Blessings to you!
Ronda
I have one more hour of infusion, and I will be done for the day. The IV is in my right arm so I am typing with my left hand. I can barely type with two good hands so this should be interesting....
Some of my blood work came back today, and I found out I have Epstein Bar. It is a virus that can also cause fatigue as well as other symptoms. The IV infusions I am taking should help treat this as well as the lyme.
We are still awaiting the results of many more test. I am looking forward to getting it all back and being able to see the full picture.
Raegan and I are having a great time with Becki (my friend who flew out to help me with Raegan)! She has been such an incredible help to me! She is a teacher and loves preschoolers. She and Raegan bonded very quickly,and they are having a wonderful time! She leaves to go back to her husband and two beautiful girls in the morning. Raegan & I are truly going to miss her!
Raegan will be at a daycare center, for the next three days, while I am in treatment. She is very excited to go play with "friends." I think the social interaction will be very good for her. Then, my mom, "Grammy" will be here for the next two weeks. We are excited to see her, and grateful she can come and help me.
I had a great night sleep last night! I almost forgot what it was like to sleep more than a few hours at a time. They started me on a new sleeping aid that seems to agree with me!!! Hopefully, the sleep will continue.
My left hand is getting tired....
Blessings to you!
Ronda
Monday, April 21, 2008
Monday...starting the week off with a bang!
Hello Everyone!
Yes, this week is starting out to be eventful! About twenty-four hours ago, I started having pain in my upper right thigh. I called the doctor, and he told me to watch for swelling and redness. My leg began to slightly swell and when I put pressure on my leg, the veins in my leg bulged much like they did when I was nine months pregnant. (No! I am definitely not pregnant! Ha!) When these symptoms began, my dr advised me to go to the ER in order to rule out a deep vein thrombrosis (blood clot). Yes! If you are counting, this is my third ER visit in one month. For someone who hasn't ever been to the ER before April, 08, I have become all too familiar with the routine! They did a sonogram and ruled out a blood clot in the deep tissue (which is the dangerous kind). They did find a peripheral blood clot which is the reason for the discomfort and the blood pooling in my leg. I was discharged, and quickly, on my way to the clinic.... for my daily therapy. My friend Debbie said, "maybe the third ER visit is the charm." Let's hope she is right!
Thankfully, my wonderful friend, Becki, flew in from Chicago last night to help me with Raegan. She was there to be with Raegan while I was in the ER. THANK YOU BECKI!!!! It has been so great to see here. I have two more days with her! I am looking forward to our time together.
I am feeling very sad today...and I have cried several times! I really miss my family and friends. I read an e-mail earlier from Seth's teacher. (Thanks Mrs. "T" for being so great to him!) It is hard to imagine not seeing him or Chris for three or four more weeks.....it feels like a long time. All of my mommy instincts are kicking in....the reality of being away is hitting me. If you see either of them, give them a hug for me!
As I finished writing the comments about missing Seth & Chris, (I am writing from the clinic) one of the other patient's came over and handed me two boxes of gluten-free cookies for Seth. Seth is on a gluten-free diet and so is this patient. She and I had a conversation about the diet yesterday. How timely, my little boy loves these cookies....I have two boxes to bring to him! God is always on time! I needed that! Then, she stayed for a few minutes and shared in my tears...she also misses her three children.
Thanks for all of your encouraging words and comments! They mean so very much to me. Angel, thank you for the sharing the verse, Joshua 1:9 with me! "Be STRONG and courageous. Do not be afraid....God is with you WHEREVER you go." I needed to hear that today.
Love to all,
Ronda
Yes, this week is starting out to be eventful! About twenty-four hours ago, I started having pain in my upper right thigh. I called the doctor, and he told me to watch for swelling and redness. My leg began to slightly swell and when I put pressure on my leg, the veins in my leg bulged much like they did when I was nine months pregnant. (No! I am definitely not pregnant! Ha!) When these symptoms began, my dr advised me to go to the ER in order to rule out a deep vein thrombrosis (blood clot). Yes! If you are counting, this is my third ER visit in one month. For someone who hasn't ever been to the ER before April, 08, I have become all too familiar with the routine! They did a sonogram and ruled out a blood clot in the deep tissue (which is the dangerous kind). They did find a peripheral blood clot which is the reason for the discomfort and the blood pooling in my leg. I was discharged, and quickly, on my way to the clinic.... for my daily therapy. My friend Debbie said, "maybe the third ER visit is the charm." Let's hope she is right!
Thankfully, my wonderful friend, Becki, flew in from Chicago last night to help me with Raegan. She was there to be with Raegan while I was in the ER. THANK YOU BECKI!!!! It has been so great to see here. I have two more days with her! I am looking forward to our time together.
I am feeling very sad today...and I have cried several times! I really miss my family and friends. I read an e-mail earlier from Seth's teacher. (Thanks Mrs. "T" for being so great to him!) It is hard to imagine not seeing him or Chris for three or four more weeks.....it feels like a long time. All of my mommy instincts are kicking in....the reality of being away is hitting me. If you see either of them, give them a hug for me!
As I finished writing the comments about missing Seth & Chris, (I am writing from the clinic) one of the other patient's came over and handed me two boxes of gluten-free cookies for Seth. Seth is on a gluten-free diet and so is this patient. She and I had a conversation about the diet yesterday. How timely, my little boy loves these cookies....I have two boxes to bring to him! God is always on time! I needed that! Then, she stayed for a few minutes and shared in my tears...she also misses her three children.
Thanks for all of your encouraging words and comments! They mean so very much to me. Angel, thank you for the sharing the verse, Joshua 1:9 with me! "Be STRONG and courageous. Do not be afraid....God is with you WHEREVER you go." I needed to hear that today.
Love to all,
Ronda
Friday, April 18, 2008
First week and counting....
Hello everyone! I made it through my first week! It has been overwhelming and busy with every test imaginable as well as multiple meetings with the doctors and staff. However, I am starting to feel more familiar with everything and adjusted to the routine as well as the city of Reno. I am learning more about all of the IV treatments and medications and very hopeful that they will help me. Not only are they treating the lyme, they are looking at every other possible contribuatory factor to my health concerns. I have wanted someone to tell me what is going on in my body, and I have hope they will help me find some answers.
They have confirmed that the lyme is effecting my central nervous system. They told me that my heart appears healthy, and my cardiac symptoms are due to lyme damaging the nerves to the heart. Either way....it isn't a good thing for my heart. I am glad I am doing this sooner rather than later. It is also the reason for my insomnia and joint pain (I had assumed was due to exercise, running, and age). They are messing with my brain and nervous system! They also showed me a sample of my blood under a high-powered microscope. I was able to see the actual lyme spirochetes swimming around my red blood cells, and the cyst or eggs they have layed in my red blood cells. It was very crazy to actually see them!!! I wanted to reach through the screen and get rid of them!
In addition, they have told me I am allergic to sulfer and "sensitive" to some of the meds they put in the IV therapy. Interesting.....I wonder how many more trips I would have made to the ER due to reactions to medication! I guess my body was telling me something a few weeks ago. The doctor was very kind as she explained all of this to me. She said, "we will just have to treat you very special." I think that is code for being a difficult patient!! It isn't the first time I have been told...I am difficult!
The first three days I was given IV's for the purpose of detox. I have been told that lyme thrive when there are toxins in your body, and if you want to destroy them, you must first destroy the environment in which they thrive. In addition, I took shots that introduce oxygen into your body. Lyme are anaerobic and they die in the presence of oxygen. It is all very interesting!
I have definitely entered the world of needles, and my veins are wondering what is going on! I have learned about rolling veins and veins I didn't even know I had! On the second day...I didn't listen closely enough to the nurses instructions and a needle went through the vein and fluid from the IV went into the tissue. I learned that lesson the hard way....when they say, "be still," they mean it!
I have met many wonderful people who are also patients. Many of them have lyme disease as well, and it is incredible to hear their stories. I am sure you will be hearing about some of the stories as time goes on. They are inspiring and give me alot of perspective.
I forgot to mention in my first entry that Raegan (my four-year-old daughter) came with me to Reno. Chris, my husband, and I felt she was too young to be away from "mommy" for such a long period of time. Chris, Raegan and I made the trip together, and Chris has been an incredible help getting settled this week. I could not have made it without him. My dear friend, Amy, has kept Seth for me this entire week so he could stay in school. (Thank you Amy!!) Chris left this morning to go back home and pick up Seth. He will stay with Seth at home for the remainder of my treatment....making occassional departures for work. He will probably make a trip out toward the end of treatment and bring Seth with him. I will miss them sooo much! A few friends and my mom are scheduled to come and help me with Raegan when Chris is not here. I will definitely need the help, and I look forward to the company.
Overall, I am doing well. I am just very tired and feel "fluish" today. I did not sleep last night (even with sleeping aids), and that makes the day more difficult. However, Raegan is keeping me laughing with her singing and dancing and she is being very patient as I write. The first few days were hard for her, but she has is falling into a routine and seems very content to be with her mommy (she just typed mommy for me). I am going to go rest now. Thanks again for your love, prayers and concern! It means the world to me!
Ronda & Raegan
They have confirmed that the lyme is effecting my central nervous system. They told me that my heart appears healthy, and my cardiac symptoms are due to lyme damaging the nerves to the heart. Either way....it isn't a good thing for my heart. I am glad I am doing this sooner rather than later. It is also the reason for my insomnia and joint pain (I had assumed was due to exercise, running, and age). They are messing with my brain and nervous system! They also showed me a sample of my blood under a high-powered microscope. I was able to see the actual lyme spirochetes swimming around my red blood cells, and the cyst or eggs they have layed in my red blood cells. It was very crazy to actually see them!!! I wanted to reach through the screen and get rid of them!
In addition, they have told me I am allergic to sulfer and "sensitive" to some of the meds they put in the IV therapy. Interesting.....I wonder how many more trips I would have made to the ER due to reactions to medication! I guess my body was telling me something a few weeks ago. The doctor was very kind as she explained all of this to me. She said, "we will just have to treat you very special." I think that is code for being a difficult patient!! It isn't the first time I have been told...I am difficult!
The first three days I was given IV's for the purpose of detox. I have been told that lyme thrive when there are toxins in your body, and if you want to destroy them, you must first destroy the environment in which they thrive. In addition, I took shots that introduce oxygen into your body. Lyme are anaerobic and they die in the presence of oxygen. It is all very interesting!
I have definitely entered the world of needles, and my veins are wondering what is going on! I have learned about rolling veins and veins I didn't even know I had! On the second day...I didn't listen closely enough to the nurses instructions and a needle went through the vein and fluid from the IV went into the tissue. I learned that lesson the hard way....when they say, "be still," they mean it!
I have met many wonderful people who are also patients. Many of them have lyme disease as well, and it is incredible to hear their stories. I am sure you will be hearing about some of the stories as time goes on. They are inspiring and give me alot of perspective.
I forgot to mention in my first entry that Raegan (my four-year-old daughter) came with me to Reno. Chris, my husband, and I felt she was too young to be away from "mommy" for such a long period of time. Chris, Raegan and I made the trip together, and Chris has been an incredible help getting settled this week. I could not have made it without him. My dear friend, Amy, has kept Seth for me this entire week so he could stay in school. (Thank you Amy!!) Chris left this morning to go back home and pick up Seth. He will stay with Seth at home for the remainder of my treatment....making occassional departures for work. He will probably make a trip out toward the end of treatment and bring Seth with him. I will miss them sooo much! A few friends and my mom are scheduled to come and help me with Raegan when Chris is not here. I will definitely need the help, and I look forward to the company.
Overall, I am doing well. I am just very tired and feel "fluish" today. I did not sleep last night (even with sleeping aids), and that makes the day more difficult. However, Raegan is keeping me laughing with her singing and dancing and she is being very patient as I write. The first few days were hard for her, but she has is falling into a routine and seems very content to be with her mommy (she just typed mommy for me). I am going to go rest now. Thanks again for your love, prayers and concern! It means the world to me!
Ronda & Raegan
Saturday, April 12, 2008
The journey begins
Welcome family and friends! Thank you for taking this journey with me. As you know, I have been experiencing "strange" symptoms since my treatment for Hepatitis C ended in 2005. Over the last year, the "strange" symptoms have progressed to the point that I deal with them daily and the symptoms have began to greatly effect my quality of life.l
In early Feb, I found a docotor by the name of Dr. Shor. He diagnosed me with dysautonomia (a condition that affects your sympathetic nervous system) fibromyalgia and chronic fatigue syndrome. He began treating me with medication and continued to order blood work. Finally, on Feb.28th, he also diagnosed me with chronic lyme disease. He stated that my other diagnosis are likely due to the lyme disease. I was surprised, scared and upset. However, glad to finally know the cause of my symptoms. I have learned that chronic lyme can be difficult to diagnose so I am thankful that he found it. I thank God for leading me to Dr. Shor, and his experience and skill to find my diagnosis!
After my diagnosis, things moved very fast, and within days, my symptoms took a bad turn. My symptoms progressed from gi issues, daily fatigue, flu-like symptoms, and muscle pain that hit me randomly throughout the day to also include insomnia, night sweats, shortness of breath, rapid heart palpitations and numbness. (Yes! I am a mess!)
On March 23rd, based on my symptoms, Dr. Shor also diagnosed me with a co-infection (parasite)called Babesia. It is a parasite that can come along with the lyme disease. He prescribed Biaxin and Malerone (an antibiotic and an anti-maleria medication). I began the medication the very same day. I was desperate for relief! The night sweats and body aches resolved within days. However, the antibiotics caused "herxheimer symptoms." I had extreme flu-like symptoms most of the day, everyday. I struggled to do the basics, and to take care of my family. I learned that the herxheimer symptoms are due to toxins (the lyme that is being killed) being poured into the blood stream. Several of you came to my rescue, and helped me with my children and brought me meals! THANK YOU!!!! You have no idea how much I appreciate your compassion and love for me and my family!
In the meantime, I prayed, and looked for all methods or means of treatment. Over and over again, I learned of people who are still suffering from lyme disease after many years of antibiotic treatment. I was told about wonderful support groups, and I was beginning to pick up on the words "manage the disease." I was told by a doctor, "there are no guarantees of putting the lyme into remission or getting one's original health back." It made me want to fight all the more, and be well for my husband and children!
On April 5th, I began having a strange reaction. My face and abdomen became very hot and bright red. My face began to swell and my face became numb around my lips. I called the pharmacist to ask about a potential reaction or side-effect of my medication. She told me to go to the ER. She suspected I was having an allergic reaction. I went to the ER and the dr could not tell me why my body had those symptoms. Nor could he tell me if I was allergic to a supplement or my medication. I was told people can and do develop allergic reactions to antibiotics at anytime...even if they have been taking it for awhile. I have the responsibility of caring for my two small children. What would I do if something worse happened, and I was alone with my children? I was afraid to take medication or my supplements I stopped the Biaxin and all supplements until I could get more answers.
In the meantime, I heard about a clinic, through my dear friend Audrey, where lyme patients receive treatment with great success. She has a friend who was treated there in 2005 (along with the whole family....all four of them had lyme disease!). The entire family is healthy and doing well! The name of the clinic is Sierra Integrative Medical Center in Reno, NV. It became a beacon of hope for me! The one thing that held me back is you must go to the center for treatment and the treatment takes 4-5 weeks. I did not want to be away from home for so long, and I was afraid of the impact on my family. However, I wanted to find care where they could monitor me closely, and tell me exactly what to put in my body by means of medication and supplements.
After the ER visit, this option seemed to be a great option. My husband and I decided to further pursue possible treatment at this medical center in Reno. The more we learned. The more we were convinced that God was directing my steps in this direction. We began securing housing, flights and making plans to spend an extended stay in Reno, NV. However, my heart was heavy about being away for so long.
On April 9th, I went to work, and I was meeting with a client ...like any other day at work. (My arm had been numb for a few days and I was experiencing some pain in my arm..but still felt as though I could work.) As I was in session with this client, the pain became worse in my arm. I also began experiencing rapid heart palpitations, chest pain, dizziness and shortness of breath. I had to stop the session. I was afraid I was having a cardiac event, and my client (who is a nurse) called 911. All of the sudden, I was laying down on the coach (talk about role reversal!) Before I knew it, I was being put on a gurney, and being taken to the hospital by ambulance. I felt like I was in a bad dream. I wanted to wake-up! At the hospital, the doctors ruled-out a cardiac event and stated my symptoms were likely due to the neurological effects of lyme disease....again the dysautonomia, or my bodies ability to regulate blood pressure, heart rate, ect... This ER visit was the final straw! I felt as though my symptoms were worsening by the day. I didn't know what to expect from body from moment to moment. We couldn't get to Reno fast enough! I knew it was the right decision.
On April 15th, I began treatment. The staff it extraordinary! Within a few short days of being here, I have learned so much about my body and how to care for it. They have ordered many blood test and I know I will learn much more!
Before leaving home this week, a few friends encouraged me to start a blog and journal my journey! So, I took them up on the challenge, and here it is. I will try to write at least a few times a week. I hope it is a place that you can check on me anytime you want and walk with me through this treatment...even though I am so far from home. Thanks for taking this journey with me! Thank you for all of your prayers and support! I love all of you!
Ronda
In early Feb, I found a docotor by the name of Dr. Shor. He diagnosed me with dysautonomia (a condition that affects your sympathetic nervous system) fibromyalgia and chronic fatigue syndrome. He began treating me with medication and continued to order blood work. Finally, on Feb.28th, he also diagnosed me with chronic lyme disease. He stated that my other diagnosis are likely due to the lyme disease. I was surprised, scared and upset. However, glad to finally know the cause of my symptoms. I have learned that chronic lyme can be difficult to diagnose so I am thankful that he found it. I thank God for leading me to Dr. Shor, and his experience and skill to find my diagnosis!
After my diagnosis, things moved very fast, and within days, my symptoms took a bad turn. My symptoms progressed from gi issues, daily fatigue, flu-like symptoms, and muscle pain that hit me randomly throughout the day to also include insomnia, night sweats, shortness of breath, rapid heart palpitations and numbness. (Yes! I am a mess!)
On March 23rd, based on my symptoms, Dr. Shor also diagnosed me with a co-infection (parasite)called Babesia. It is a parasite that can come along with the lyme disease. He prescribed Biaxin and Malerone (an antibiotic and an anti-maleria medication). I began the medication the very same day. I was desperate for relief! The night sweats and body aches resolved within days. However, the antibiotics caused "herxheimer symptoms." I had extreme flu-like symptoms most of the day, everyday. I struggled to do the basics, and to take care of my family. I learned that the herxheimer symptoms are due to toxins (the lyme that is being killed) being poured into the blood stream. Several of you came to my rescue, and helped me with my children and brought me meals! THANK YOU!!!! You have no idea how much I appreciate your compassion and love for me and my family!
In the meantime, I prayed, and looked for all methods or means of treatment. Over and over again, I learned of people who are still suffering from lyme disease after many years of antibiotic treatment. I was told about wonderful support groups, and I was beginning to pick up on the words "manage the disease." I was told by a doctor, "there are no guarantees of putting the lyme into remission or getting one's original health back." It made me want to fight all the more, and be well for my husband and children!
On April 5th, I began having a strange reaction. My face and abdomen became very hot and bright red. My face began to swell and my face became numb around my lips. I called the pharmacist to ask about a potential reaction or side-effect of my medication. She told me to go to the ER. She suspected I was having an allergic reaction. I went to the ER and the dr could not tell me why my body had those symptoms. Nor could he tell me if I was allergic to a supplement or my medication. I was told people can and do develop allergic reactions to antibiotics at anytime...even if they have been taking it for awhile. I have the responsibility of caring for my two small children. What would I do if something worse happened, and I was alone with my children? I was afraid to take medication or my supplements I stopped the Biaxin and all supplements until I could get more answers.
In the meantime, I heard about a clinic, through my dear friend Audrey, where lyme patients receive treatment with great success. She has a friend who was treated there in 2005 (along with the whole family....all four of them had lyme disease!). The entire family is healthy and doing well! The name of the clinic is Sierra Integrative Medical Center in Reno, NV. It became a beacon of hope for me! The one thing that held me back is you must go to the center for treatment and the treatment takes 4-5 weeks. I did not want to be away from home for so long, and I was afraid of the impact on my family. However, I wanted to find care where they could monitor me closely, and tell me exactly what to put in my body by means of medication and supplements.
After the ER visit, this option seemed to be a great option. My husband and I decided to further pursue possible treatment at this medical center in Reno. The more we learned. The more we were convinced that God was directing my steps in this direction. We began securing housing, flights and making plans to spend an extended stay in Reno, NV. However, my heart was heavy about being away for so long.
On April 9th, I went to work, and I was meeting with a client ...like any other day at work. (My arm had been numb for a few days and I was experiencing some pain in my arm..but still felt as though I could work.) As I was in session with this client, the pain became worse in my arm. I also began experiencing rapid heart palpitations, chest pain, dizziness and shortness of breath. I had to stop the session. I was afraid I was having a cardiac event, and my client (who is a nurse) called 911. All of the sudden, I was laying down on the coach (talk about role reversal!) Before I knew it, I was being put on a gurney, and being taken to the hospital by ambulance. I felt like I was in a bad dream. I wanted to wake-up! At the hospital, the doctors ruled-out a cardiac event and stated my symptoms were likely due to the neurological effects of lyme disease....again the dysautonomia, or my bodies ability to regulate blood pressure, heart rate, ect... This ER visit was the final straw! I felt as though my symptoms were worsening by the day. I didn't know what to expect from body from moment to moment. We couldn't get to Reno fast enough! I knew it was the right decision.
On April 15th, I began treatment. The staff it extraordinary! Within a few short days of being here, I have learned so much about my body and how to care for it. They have ordered many blood test and I know I will learn much more!
Before leaving home this week, a few friends encouraged me to start a blog and journal my journey! So, I took them up on the challenge, and here it is. I will try to write at least a few times a week. I hope it is a place that you can check on me anytime you want and walk with me through this treatment...even though I am so far from home. Thanks for taking this journey with me! Thank you for all of your prayers and support! I love all of you!
Ronda
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