I have been meaning to blog...but I don't what to whine. Things have not been going as well as I had hoped. I have had some nasty episodes. I did not want my blog to be a downer, so I did not blog. On a brighter note I have some really good days, and weeks. So for now it is still the some o same o. Still no definitive answers and again waiting for more lab results.
Wednesday, August 17, 2011
Sunday, May 1, 2011
My Unpredictable Life
It has been a whirlwind around here. My mom and her breast cancer have taken the front seat, and my health is in a holding pattern for the time being. Well not really, I am still moving forward, but my main concern is for my mom. I am not going to get any worse I am just not going to see much improvement right now. I am fine with that.
The thyroid thing was a disaster. I never took the second treatment and my temperature returned to normal. Maybe it just needed a shock treatment.
The next visit I had she discussed my mental state and that if I did not believe I was going to get better then I would not get better. I was not very excited about the visit, but I did go away with a little more aware of where I chose to let my thoughts dwell.
When I went this last week she asked how I was doing. I still struggle, but for the most part, and in perspective of where I have been, I think I am doing pretty well. I have also have relinquished to the fact that I am 38 and not 21, I should not expect to feel like I am 21. I am grateful that I have come as far as I have. I did go see a Dr about my chest congestion and the pain in my chest bone. He said it was allergies and inflation around the cartridge. I don’t know if I completely agree. Neither thing he suggested has made any difference. I will let it sit on the back burner for awhile. Maybe it will go away on its own. The other reason I told her I was feeling fine was after the last visit I did not want to revisit my mental state. Hello, my world has been turned upside down with my mom and my family, I know I mental right now!
I was due to redo some of my labs; one of the supplements I take can thin my blood. She looked back though some of my older labs and found some tests she wanted to check up on. That was fine with me. Well well, come to find out all is not perfect or a result of my mental state. My vitamin D was super low (that might explain the weariness) the other thing is that my cholesterol is very low. I thought that would be a good thing, but apparently it is not a good thing. When your cholesterol gets too low it affects how your body can process hormones. We have known my hormones have not been right for a while, but there have been bigger health issues that needed attention first.
I feel a little vindictive about the whole last couple of months. Her she was telling, not that it was in my head, but that my head was not helping. Come to find out it was not in my head, although I have been a lot better about what thoughts I choose to dwell on. AND the labs were shockingly low enough that she needs to start a treatment right away instead of waiting until our next appointment. I look forward to more improvement in my health. I can push through my day, but it would be nice if I was not dragging my body along for the ride.
The thyroid thing was a disaster. I never took the second treatment and my temperature returned to normal. Maybe it just needed a shock treatment.
The next visit I had she discussed my mental state and that if I did not believe I was going to get better then I would not get better. I was not very excited about the visit, but I did go away with a little more aware of where I chose to let my thoughts dwell.
When I went this last week she asked how I was doing. I still struggle, but for the most part, and in perspective of where I have been, I think I am doing pretty well. I have also have relinquished to the fact that I am 38 and not 21, I should not expect to feel like I am 21. I am grateful that I have come as far as I have. I did go see a Dr about my chest congestion and the pain in my chest bone. He said it was allergies and inflation around the cartridge. I don’t know if I completely agree. Neither thing he suggested has made any difference. I will let it sit on the back burner for awhile. Maybe it will go away on its own. The other reason I told her I was feeling fine was after the last visit I did not want to revisit my mental state. Hello, my world has been turned upside down with my mom and my family, I know I mental right now!
I was due to redo some of my labs; one of the supplements I take can thin my blood. She looked back though some of my older labs and found some tests she wanted to check up on. That was fine with me. Well well, come to find out all is not perfect or a result of my mental state. My vitamin D was super low (that might explain the weariness) the other thing is that my cholesterol is very low. I thought that would be a good thing, but apparently it is not a good thing. When your cholesterol gets too low it affects how your body can process hormones. We have known my hormones have not been right for a while, but there have been bigger health issues that needed attention first.
I feel a little vindictive about the whole last couple of months. Her she was telling, not that it was in my head, but that my head was not helping. Come to find out it was not in my head, although I have been a lot better about what thoughts I choose to dwell on. AND the labs were shockingly low enough that she needs to start a treatment right away instead of waiting until our next appointment. I look forward to more improvement in my health. I can push through my day, but it would be nice if I was not dragging my body along for the ride.
Sunday, March 6, 2011
I think I want to get off now
It took me a week to get ready to start treatment. I had to really wrap my mind around everything. I read all the literature and just felt that I really could not commit to such a rigorous plan right now. In the end I decided I really want and need to get better, so I decided to suck it up and get started. I searched the internet and found a watch that has 5 alarms. It is not very pretty, but it works! It goes off when I need to take my pills and when I have to take my temperature. I made a cute little zipper wallet to hold all my pills. I loved the treatment for the 1st 4 days. I felt amazing. Then I became one of the 20% that feel worse before they feel better. I started having the “call you Dr if you have any of these symptoms”, symptoms. She had me take my antidote pill, which I was told in the beginning I must have on me at all times! I instantly felt better and was given the instructions that I needed to start the tapering down that I had hit my threshold for this round. What I did not know what those list of symptoms where what normal people experience. For me I should have stopped when my not so common symptoms that hit the day before! Needless to say I took too high of a dosage. Which I have learned does not make for a very positive experience when you have to taper off the medication. You have to taper off twice as slow as you go up. Let’s just say it had not been a pretty. Three phone calls into my ND, and another antidote pill and I am still struggling. She is hopeful that the next round will be the one that gets my body to temperature and I don’t have any reactions. With as scary and yucky as this has been, quite frankly, I am not sure there is going to be a next time!
On a positive not my sinus pain and congestion went away, and I started to perspire. That may not sound like much by I have not perspired in over a year. I am healing!
So now I have to decide if the temporary awfulness out ways the possible positive changes. Right now the answer would be no. This is not worth it to me. Then again I felt the same way during childbirth and went on to have 5 more.
On a positive not my sinus pain and congestion went away, and I started to perspire. That may not sound like much by I have not perspired in over a year. I am healing!
So now I have to decide if the temporary awfulness out ways the possible positive changes. Right now the answer would be no. This is not worth it to me. Then again I felt the same way during childbirth and went on to have 5 more.
Monday, February 21, 2011
Another visit another revelation
Today was my routine ND visit. I have been doing well, but over the last several weeks I felt like I was losing ground.
I realized on my way to my appointment that I have getting really tired again. It has been an increasing problem lately. One day last week I actually could not stay awake at the library waiting for T to get out of class. I was embarrassed, but really had to choice, I slept in the library. I cannot explain why I was tired. I also noticed I have been feeling more fluish lately. I just put it down as part of the process. When I saw my ND today she said I did not look so good.
I finally informed her of my mental handicap. When I feel good I don’t remember feeling bad. Usually when I visit her I feel good so she hears the “everything is wonderful” report. When I feel bad, then I remember what it feels like, only then do I remember how often I am feeling bad. I am becoming cold (more like freezing) more often, tired, and achy, but I still didn’t think it was bad enough to bring it to her attention. After all I pretty much have my life back. I am not expecting perfection!
I had also forgotten I had sent her an e-mail a couple weeks earlier outlining my symptoms on one of my bad days. I know that sometimes forget to tell her things when I see her, so I try to keep her up-to-date between visits. Well luckily she is really great and read my note and gave it some thought. When we started talking she explained that Thyroid was still not functioning properly. I was surprised because I take a thyroid support and we had even lessened the dosage a couple months ago. She took my temperature and it was below normal. It confirmed her suspicions that I am also dealing with Wilson syndrome (on top of the Lyme). She taught me that your thyroid helps regulate body temperature. If my body is not up to normal temperature my thyroid cannot function properly and my body cannot heal itself. That would explain why I cannot shake the months of unexplained congestion and sinus pain.
So off to another treatment plan, on top of my already mind boggling daily regiment (Okay it is not that bad, but trying to remember to take a pill 3 times a day without eating 2 hours before and 30 minutes after takes a little planning). This treatment is a little more complicated and has the potential for a lot more side effects (Something I always try to avoid!) So in a nut shell here is what I have to do. I have to take a dose of T3 twice a day. Exactly 12 hours apart. (15 min can mess up the treatment) I have to take my temperature 3 times a day. 3 hours after I wake up, 3 hours after that and 3 hours after that. I have to adjust the amount of T3 I take until I get my body temperature to 98.6. Or get this, until I have too many side effects to increase the dosage! At least death was not listed as one of the side effects ;-)). There is another whole long process for coming down off of the T3. I will not bore you with the details. I also have to carry a pill with me at all times in case my side effects overwhelm me. Personally, it sounds a little scary, but I read the literature and this is a real protocol and has been used by MD’s for over 25 years now. I am just doing it under the supervision of a ND. It could take two cycles to heal my thyroid, but by using T3 it helps reset my thyroid and heal it. I think the scariest part for me is that 20% of patients feel worse before they feel better. I am really praying that I do not fall in that 20%!
Even with all the uncertainty I am so grateful for this path. As unorthodox as this path is to me and most of my readers, I keep thinking about the Dr. that in the beginning was trying to convince me that I was Bi-polar. What would have happen if I would have chosen that road? Where would I be today? I shudder at the idea. I am not saying this is the only path I could have taken. I believe that there are many paths to healing. This is just the one that I have been led to and I am very grateful for it.
I realized on my way to my appointment that I have getting really tired again. It has been an increasing problem lately. One day last week I actually could not stay awake at the library waiting for T to get out of class. I was embarrassed, but really had to choice, I slept in the library. I cannot explain why I was tired. I also noticed I have been feeling more fluish lately. I just put it down as part of the process. When I saw my ND today she said I did not look so good.
I finally informed her of my mental handicap. When I feel good I don’t remember feeling bad. Usually when I visit her I feel good so she hears the “everything is wonderful” report. When I feel bad, then I remember what it feels like, only then do I remember how often I am feeling bad. I am becoming cold (more like freezing) more often, tired, and achy, but I still didn’t think it was bad enough to bring it to her attention. After all I pretty much have my life back. I am not expecting perfection!
I had also forgotten I had sent her an e-mail a couple weeks earlier outlining my symptoms on one of my bad days. I know that sometimes forget to tell her things when I see her, so I try to keep her up-to-date between visits. Well luckily she is really great and read my note and gave it some thought. When we started talking she explained that Thyroid was still not functioning properly. I was surprised because I take a thyroid support and we had even lessened the dosage a couple months ago. She took my temperature and it was below normal. It confirmed her suspicions that I am also dealing with Wilson syndrome (on top of the Lyme). She taught me that your thyroid helps regulate body temperature. If my body is not up to normal temperature my thyroid cannot function properly and my body cannot heal itself. That would explain why I cannot shake the months of unexplained congestion and sinus pain.
So off to another treatment plan, on top of my already mind boggling daily regiment (Okay it is not that bad, but trying to remember to take a pill 3 times a day without eating 2 hours before and 30 minutes after takes a little planning). This treatment is a little more complicated and has the potential for a lot more side effects (Something I always try to avoid!) So in a nut shell here is what I have to do. I have to take a dose of T3 twice a day. Exactly 12 hours apart. (15 min can mess up the treatment) I have to take my temperature 3 times a day. 3 hours after I wake up, 3 hours after that and 3 hours after that. I have to adjust the amount of T3 I take until I get my body temperature to 98.6. Or get this, until I have too many side effects to increase the dosage! At least death was not listed as one of the side effects ;-)). There is another whole long process for coming down off of the T3. I will not bore you with the details. I also have to carry a pill with me at all times in case my side effects overwhelm me. Personally, it sounds a little scary, but I read the literature and this is a real protocol and has been used by MD’s for over 25 years now. I am just doing it under the supervision of a ND. It could take two cycles to heal my thyroid, but by using T3 it helps reset my thyroid and heal it. I think the scariest part for me is that 20% of patients feel worse before they feel better. I am really praying that I do not fall in that 20%!
Even with all the uncertainty I am so grateful for this path. As unorthodox as this path is to me and most of my readers, I keep thinking about the Dr. that in the beginning was trying to convince me that I was Bi-polar. What would have happen if I would have chosen that road? Where would I be today? I shudder at the idea. I am not saying this is the only path I could have taken. I believe that there are many paths to healing. This is just the one that I have been led to and I am very grateful for it.
Wednesday, February 9, 2011
Gratitude
I have been thinking about posting for the last couple of days. I just have been at a loss at what to post. I have no major announcements. I am not cured and I still have days that are better than others. That being said, these days are way better then what they used to be, for that I am grateful. I have bee thinking about this for a couple of days, but today it really hit me today as I was making the bed. It used to be I would pull the sheets and wash them and then I would have to wait for either Michael or my mom to stop by and one of them would put it together for me. The amount of energy I had was so low that when I had to budget the amount of energy I had with the amount of things that needed my attention, making the bed took too much energy and strength. Today I ran in and made my bed it just a minute with little effort. It really reminded me how bad it used to be and how far I have come.
I am grateful for my ability to comprehend and my focus to return. I have especially noticed it with the newest neurotransmitter supplement. I not only had no energy I could not focus. It got to the point that semi-complicated recipes were overwhelming. I would miss steps and ingredients. Details for e-mails were missed. Many times I could not remember what I read as soon as I shut the book. Now I am reading about health and diet for hours on in (that is what I do while I am waiting for my children at lessons and activities.) I can comprehend and remember. Well for the most part…I still don’t get all the Chinese ideas of ying, yang, qui, excess, deficient etc….
Finally I am grateful for love, family and laughter. I am grateful to have the energy to play with my children, chat with them and especially laugh with them. I can read my little boys to sleep. This had been foreign to the younger boys. I can play with them at the park instead of just watch. I can have meaningful conversations with my older children. We can be witty and tease each other again. I can drive them everywhere they need and want to go. I can spend fun time with Michael. I was so tired and out of it by the end of the day he would just have to come home and take over for me. It was not fun for either of us.
For these and many other seemingly small things I am grateful!
I am grateful for my ability to comprehend and my focus to return. I have especially noticed it with the newest neurotransmitter supplement. I not only had no energy I could not focus. It got to the point that semi-complicated recipes were overwhelming. I would miss steps and ingredients. Details for e-mails were missed. Many times I could not remember what I read as soon as I shut the book. Now I am reading about health and diet for hours on in (that is what I do while I am waiting for my children at lessons and activities.) I can comprehend and remember. Well for the most part…I still don’t get all the Chinese ideas of ying, yang, qui, excess, deficient etc….
Finally I am grateful for love, family and laughter. I am grateful to have the energy to play with my children, chat with them and especially laugh with them. I can read my little boys to sleep. This had been foreign to the younger boys. I can play with them at the park instead of just watch. I can have meaningful conversations with my older children. We can be witty and tease each other again. I can drive them everywhere they need and want to go. I can spend fun time with Michael. I was so tired and out of it by the end of the day he would just have to come home and take over for me. It was not fun for either of us.
For these and many other seemingly small things I am grateful!
Wednesday, January 19, 2011
Epiphany
I did have my appointment this last week. I think it was a good appointment, but it really became more of a counseling session. Some of these things are going to sound strange, but of course it is all too real for me.
My number one struggle is the fact that I am going to recover and live. I know that should be a good thing and it is, but I have been living with the unknown for so long that I had convinced myself that I was only buying my time until someone found out that I was truly dying. I had spent many night thinking about my kid’s future without me. Not happy thoughts. Not that I wanted to die, I am just one of those people that have to play out every possibility. I did not plan my funeral or write a list of things I wanted my children to know or anything like that, yet. I just really believe in my heart of hearts that this was going to win. Now I know that I will die eventually, but in all likelihood it will not be soon or be from the Lyme. I am still slated to make a full recovery, hopefully with few as few setbacks as possible. I was not really looking past the end of my nose. I was not looking to the future. Now I have to change my perspective stop thinking about the end and start living. I was so consumed with the here and now I did not have time or energy to realize I even had a future. It is truly overwhelming and daunting. I am just trying to put things back together day by day.
The second thing I realized and this is the hardest for me is that my older kids have been without a complete mom for over 5 years. I went down with J’s pregnancy and never really got back up. My children have been fixing their own breakfast and lunches for years and have fed the little guys too. They have not eaten the healthiest, because I did not have time to model or teach them how. Now I think they are paying the price with their health. Now we are trying to pick up those pieces. The task is overwhelming at times. I try not to let the guilt set in. I know that this was not my fault or my choosing. I have to trust that Heavenly Father was watching over them when I could not. I am trusting that He is going to keep it up while I sort this all out. I really would rather him be in charge then me. I am sure he knows what he is doing. Unlike me who is still pretty clueless ;-))
I did get the neurotransmitter test results. I must have been in bad shape when we started. I have been taking GABA supplements since my first ND visit. My levels are still low. We added another tablet and that has helped. I also started yet another supplement to lower glutamate. I just know the name. I don’t really know what it does. Between the two I feel pretty good. I don’t have to spend the day constantly trying to stay calm and not freak out over the littlest things.
She also changed my enzyme to one that is more efficient and aggressive. I have to taper into it. I am hoping for it to just do its thing without feeling the need to include the rest of me. I can at least hope.
My number one struggle is the fact that I am going to recover and live. I know that should be a good thing and it is, but I have been living with the unknown for so long that I had convinced myself that I was only buying my time until someone found out that I was truly dying. I had spent many night thinking about my kid’s future without me. Not happy thoughts. Not that I wanted to die, I am just one of those people that have to play out every possibility. I did not plan my funeral or write a list of things I wanted my children to know or anything like that, yet. I just really believe in my heart of hearts that this was going to win. Now I know that I will die eventually, but in all likelihood it will not be soon or be from the Lyme. I am still slated to make a full recovery, hopefully with few as few setbacks as possible. I was not really looking past the end of my nose. I was not looking to the future. Now I have to change my perspective stop thinking about the end and start living. I was so consumed with the here and now I did not have time or energy to realize I even had a future. It is truly overwhelming and daunting. I am just trying to put things back together day by day.
The second thing I realized and this is the hardest for me is that my older kids have been without a complete mom for over 5 years. I went down with J’s pregnancy and never really got back up. My children have been fixing their own breakfast and lunches for years and have fed the little guys too. They have not eaten the healthiest, because I did not have time to model or teach them how. Now I think they are paying the price with their health. Now we are trying to pick up those pieces. The task is overwhelming at times. I try not to let the guilt set in. I know that this was not my fault or my choosing. I have to trust that Heavenly Father was watching over them when I could not. I am trusting that He is going to keep it up while I sort this all out. I really would rather him be in charge then me. I am sure he knows what he is doing. Unlike me who is still pretty clueless ;-))
I did get the neurotransmitter test results. I must have been in bad shape when we started. I have been taking GABA supplements since my first ND visit. My levels are still low. We added another tablet and that has helped. I also started yet another supplement to lower glutamate. I just know the name. I don’t really know what it does. Between the two I feel pretty good. I don’t have to spend the day constantly trying to stay calm and not freak out over the littlest things.
She also changed my enzyme to one that is more efficient and aggressive. I have to taper into it. I am hoping for it to just do its thing without feeling the need to include the rest of me. I can at least hope.
Wednesday, January 5, 2011
Madam sunshine
I have been meaning to sit and blog, but I am so busy. I am taking this as a very good sign that I am doing better. I have to apologize. My hope it keeping the blog was for it to never be sad. I wanted it to be informative and witty. I just read my last two posts. What a downer. I spend hours on my posts. I really thought they were uplifting and positive. Wow, I must have been really bad.
I have had my moments, but I am feeling much better. I still go batty every once in a while, but today I am in a good place. I have been trying to be more proactive and educated myself on this whole natural healing thing. It is all new to me. I am sure people think that I am a little off my rocker when I start explaining all the things I have done. Seeing is believing. I also wonder if because most people only see the weight loss and most of my struggles are internal they just don’t comprehend why I get so passionate and excited.
I asked my ND to give me a source I can trust. When I try to be my own ND I only provide comic relief to the real one. A couple of months ago I had a sinus problem. I searched and searched the internet. People swore by this raw apple cider and honey remedy. The only thing it did was clean out my digestive track :-D . I finally got her to recommend a book that I could trust.
It is not at all what I expected. It is very Chinese medicine. Ying, Yang, Qi. I don’t get it. I am about 80 pages into it. The jury is still out on if this is going to help me of if my ND was hoping that it would keep me busy for awhile and out of her hair.
I have another appointment next week. The last of the labs should be in and maybe the final missing piece will be in there somewhere and I can get off this roller coaster once and for all.
It is not at all what I expected. It is very Chinese medicine. Ying, Yang, Qi. I don’t get it. I am about 80 pages into it. The jury is still out on if this is going to help me of if my ND was hoping that it would keep me busy for awhile and out of her hair.
I have another appointment next week. The last of the labs should be in and maybe the final missing piece will be in there somewhere and I can get off this roller coaster once and for all.
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