Ok so, no more stalling.... I've been waiting until the perfect inspiration comes to write the best post possible. Guess what happened? I kept finding flaws or thinking it can be better or just thought there's something that should be said first. So I've decided no more stalling!
So the first thing I'll mention is a symptom I had that I think we have found a solution, which makes me ecstatic! I have started getting some odd shakes about 18 months ago and no one could explain it or stop it... A few months ago, I mentioned it to my PCP (I just started seeing her earlier this year) and when I told her my mom says it makes her think of seizures, my Dr mentioned trying an activated B vitamin. She said that sometimes taking a B vitamin isn't enough for people that can't actually activate it on their own and it sounds like it may be my problem. She mentioned one brand, but I couldn't find it locally. After researching I found that another name for activated B is coenzyme B, and started taking it almost 2 months ago. Although I still have the symptom some, it is SO much less... I would have these shakes at least twice a week and now I'm down to every other week or less and the episode doesn't last as long either! Do I think it's a cure for everyone? No. Am I glad that it at least helped one of my symptoms? Absolutely!
Now for Thanksgiving.... Due to husband being on-call and not allowed to leave the house unless called for work, we have to have our Thanksgiving at home. Which means we are doing our own cooking. Thankfully, he plans to help and it's only the 3 of us, no guests. Unfortunately, I've been having some issues with my big toes for months and just had a procedure done that didn't alleviate the pain and added the "post- procedure" pain to it. So walking and standing have been even more difficult than normal...
Today I planned to do some prep work, dishes that are behind, make some gluten-free crusts, boil eggs, etc. It is now 3:30 and I still haven't stepped into the kitchen except to eat breakfast this morning (thankfully my son can make his own lunch). I don't even have any plans for supper tonight! The culprit today? I'm exhausted! I got "plenty" of sleep (didn't go to bed super late and got up when I was ready), but I just can't get motivated. Dr also put me on an adrenal support that I take 2 in the morning with the option to take 1-2 in the afternoon for a boost. So far I haven't noticed any difference even in the morning but going to give taking 1 now a shot to see if I can get some energy for the kitchen work.
Of course my house is still a mess since I've been in too much pain, but I'll have to be content with whatever I can do and be thankful that hubby is understanding! So, now I'm going to go take that vitamin and see what I can do!
Praying y'all have a blessed Thanksgiving with your family and get the rest you need!
Wednesday, November 23, 2016
No more stalling
Friday, October 14, 2016
My journey so far...
So I figured that in order to be able to write about what is going on in my life, especially in regards to my diagnosis and the treatments that have been tried so far, I need to give some background. I hesitated to write this as I was afraid that it would be boring. However, I realized that if I start talking about things that I am trying or doing without the previous explanation, it would get confusing. So please bear with me here.
Although I wrote a little about my plans for this blog (almost 2 years ago, oopps), I did not fully explain my journey so far between symptoms, diagnosis, treatments or how it has affected my life. So let me begin with diagnosis and treatments, today.
As a child, I was sick often. Little things, minor things mostly, except I constantly had strep throat causing me to have my tonsils removed at 10 years old. I was an active child, participating in a baton corps that also did some dance. I was in parades and competitions for 3 or 4 years. After moving away, in the summer before 8th grade, I did not join another baton group but instead went to cheerleading. I cheered for 3 years, and when I didn't make the squad my junior year, I switched to track. In baton, I occasionally had issues with being light headed, but it was usually attributed to dehydration (I was terrible at drinking, especially water). Then in High School, my light-headedness turned into syncopal episodes. Of course, when it happened during school, the nurse automatically thought low blood sugar and gave me cheese and orange juice. I continued to have issues, sometimes often, other times it would be months with no issues. This continued all through High School and into college. When I was told my job and my degree was at stake while in college, I started going to more specialists. I took off a quarter in college and changed my position at work. I went to several doctors and none of them could actually find a cause. The cardiologist said it was neurological and the neurologist said he thinks it's something like neuro-cardiagenic syncope, that the problem starts with the cardio system. He however, was willing to try to treat me, unlike the cardiologist. So my journey of medicine trials began. I can't even come close to remembering what all was tried, but I do remember that Depakote was helping more than anything. However, about a year after I was prescribed it, we moved to another state and I was no longer able to see the prescribing doctor. Then I got pregnant 2 weeks after the move! I was labeled high risk because I had been diagnosed and treated for Lyme's Disease right before I moved, and I had syncopal episodes. I am still known as "the girl who passed out while pregnant" at my church, even though I am on the praise team and went to the church in my teens. I delivered a healthy baby boy and about 6 months later my depression got so bad that I was hospitalized. The psychologist that was on call quickly figured out that the depression and the syncope had to be related and called in a neurologist. He did test after test for 5 months and when I mentioned my aunt, who is a nurse, knew a coworker that was diagnosed with POTS, he told me that it was something that he thought of before and was willing to test me if I wanted. July 2010, at least 10 years after my first syncope episode, I was diagnosed with POTS!!!!!! It should have been so freeing to have an answer after all those years. And at first, it was. Then I realized that this answer was only another mystery. I have tried at least a dozen medicines that are typical POTS treatments, including beta blockers. I have to admit when he mentioned that the first protocol is to increase the salt intake, I laughed. I eat so much salt, that most doctors would yell at anyone else! When I mentioned that I salt everything, including my pizza, he prescribed my salt tablet to supplement. So far every medicine given to me either had worse side effects, like one made me lethargic, or didn't help my symptoms at all. I mentioned Depakote to this new neurologist, but when he explained how bad it could be long term, I agreed not to use it. Finally in 2015, he admitted that we were past his expertise. I was very saddened, and still am, to lose his as a doctor, but thankful that he was willing to admit his limits. So I went to a larger hospital, where there is supposed to be awesome POTS specialists. The doctor I was originally scheduled to see had an emergency that she had to take a leave for an undetermined amount of time. So I was transferred to another doctor who had the tilt table test reordered and a couple others ordered. After those tests confirmed that I have POTS, the cardiologist and neurologists acted like it was no big deal and my only option was to go there 3 times a week for a minimum of 3 months for cardiac rehab. While I don't have anything against that method, I don't have the means to go there that often for that long while homeschooling my child and living over 90 mins away with one vehicle that my husband takes to work. No one was willing to work with me on finding another location. I even had one doctor tell me that since I am "young, thin and pretty" that I should be fine and will grow out of it because he doesn't have any patients over 40! UGH! Yep, I stopped wasting my time and money trying to see them for no help.
A year later, I found a new primary doctor, needed one closer to my home that wouldn't send me to a specialist for everything, like my previous one did I have POTS and he didn't understand it. This doctor so far is trying hard! As of now, only 4 months in, she has tried changing my diet to see if it could be that simple, it wasn't. She has added some supplements and vitamins because several of my levels are low. Now she is trying some new supplements and researching to have me tested for the possibility that the tick that gave me Lyme's could have given me other parasites that weren't caught. I will write another post soon explaining better what she has tried and it's results so far, but this one is getting long enough!
As I have said, I can't guarantee when I will post, but I do hope it will be better than the previous 20 month delay... Until then, feel free to tell me your story or ask for a particular topic to be covered. I'll do my best!
Although I wrote a little about my plans for this blog (almost 2 years ago, oopps), I did not fully explain my journey so far between symptoms, diagnosis, treatments or how it has affected my life. So let me begin with diagnosis and treatments, today.
As a child, I was sick often. Little things, minor things mostly, except I constantly had strep throat causing me to have my tonsils removed at 10 years old. I was an active child, participating in a baton corps that also did some dance. I was in parades and competitions for 3 or 4 years. After moving away, in the summer before 8th grade, I did not join another baton group but instead went to cheerleading. I cheered for 3 years, and when I didn't make the squad my junior year, I switched to track. In baton, I occasionally had issues with being light headed, but it was usually attributed to dehydration (I was terrible at drinking, especially water). Then in High School, my light-headedness turned into syncopal episodes. Of course, when it happened during school, the nurse automatically thought low blood sugar and gave me cheese and orange juice. I continued to have issues, sometimes often, other times it would be months with no issues. This continued all through High School and into college. When I was told my job and my degree was at stake while in college, I started going to more specialists. I took off a quarter in college and changed my position at work. I went to several doctors and none of them could actually find a cause. The cardiologist said it was neurological and the neurologist said he thinks it's something like neuro-cardiagenic syncope, that the problem starts with the cardio system. He however, was willing to try to treat me, unlike the cardiologist. So my journey of medicine trials began. I can't even come close to remembering what all was tried, but I do remember that Depakote was helping more than anything. However, about a year after I was prescribed it, we moved to another state and I was no longer able to see the prescribing doctor. Then I got pregnant 2 weeks after the move! I was labeled high risk because I had been diagnosed and treated for Lyme's Disease right before I moved, and I had syncopal episodes. I am still known as "the girl who passed out while pregnant" at my church, even though I am on the praise team and went to the church in my teens. I delivered a healthy baby boy and about 6 months later my depression got so bad that I was hospitalized. The psychologist that was on call quickly figured out that the depression and the syncope had to be related and called in a neurologist. He did test after test for 5 months and when I mentioned my aunt, who is a nurse, knew a coworker that was diagnosed with POTS, he told me that it was something that he thought of before and was willing to test me if I wanted. July 2010, at least 10 years after my first syncope episode, I was diagnosed with POTS!!!!!! It should have been so freeing to have an answer after all those years. And at first, it was. Then I realized that this answer was only another mystery. I have tried at least a dozen medicines that are typical POTS treatments, including beta blockers. I have to admit when he mentioned that the first protocol is to increase the salt intake, I laughed. I eat so much salt, that most doctors would yell at anyone else! When I mentioned that I salt everything, including my pizza, he prescribed my salt tablet to supplement. So far every medicine given to me either had worse side effects, like one made me lethargic, or didn't help my symptoms at all. I mentioned Depakote to this new neurologist, but when he explained how bad it could be long term, I agreed not to use it. Finally in 2015, he admitted that we were past his expertise. I was very saddened, and still am, to lose his as a doctor, but thankful that he was willing to admit his limits. So I went to a larger hospital, where there is supposed to be awesome POTS specialists. The doctor I was originally scheduled to see had an emergency that she had to take a leave for an undetermined amount of time. So I was transferred to another doctor who had the tilt table test reordered and a couple others ordered. After those tests confirmed that I have POTS, the cardiologist and neurologists acted like it was no big deal and my only option was to go there 3 times a week for a minimum of 3 months for cardiac rehab. While I don't have anything against that method, I don't have the means to go there that often for that long while homeschooling my child and living over 90 mins away with one vehicle that my husband takes to work. No one was willing to work with me on finding another location. I even had one doctor tell me that since I am "young, thin and pretty" that I should be fine and will grow out of it because he doesn't have any patients over 40! UGH! Yep, I stopped wasting my time and money trying to see them for no help.
A year later, I found a new primary doctor, needed one closer to my home that wouldn't send me to a specialist for everything, like my previous one did I have POTS and he didn't understand it. This doctor so far is trying hard! As of now, only 4 months in, she has tried changing my diet to see if it could be that simple, it wasn't. She has added some supplements and vitamins because several of my levels are low. Now she is trying some new supplements and researching to have me tested for the possibility that the tick that gave me Lyme's could have given me other parasites that weren't caught. I will write another post soon explaining better what she has tried and it's results so far, but this one is getting long enough!
As I have said, I can't guarantee when I will post, but I do hope it will be better than the previous 20 month delay... Until then, feel free to tell me your story or ask for a particular topic to be covered. I'll do my best!
Friday, September 30, 2016
Well that went well
Hello again!
I can't believe that I let this blog sit for 2.5 years! OOPPS! I did not mean to do that in any way... hmmmm.... Well I am sitting here after midnight, when I should be in bed, trying to figure out how and if I should start this blog again. We see how well it went before and I wasn't e-schooling my son just yet... Now, he is in 1st grade through a virtual school using K-12 curriculum (no kick-back here). I am going to try to restart this, some days I may not have anything to say, other days I may get too busy, but we will see what happens. Hopefully, prayerfully, it will go better than the first attempt!
With that being said... The first thing that I am going to do is share my first planner printable that I created for Dysautonomia Awareness Month (October). I recently bought a Happy Planner and love it! I am slowly getting into decorating the planner and decided that I wanted to have Dysautonomia Awareness stickers for my planner. Since I didn't figure it would be easy to find with how rarely known it is, I figured I should create my own. I didn't have a clue what I was doing when I started, but who knows I may have created a template to make more printables ;)
So here is my first printable for a Happy Planner.
Dysautonomia Awareness Stickers for Happy Planner
Free for Personal Use Only. I hope you like (some can be used without it being for Dysautonomia Awareness). Lots of turquoise as that is the awareness color.Well it is time for me to call it a night. That little boy of mine gets up early enough ;)
Thanks for checking out my new endeavor
I can't believe that I let this blog sit for 2.5 years! OOPPS! I did not mean to do that in any way... hmmmm.... Well I am sitting here after midnight, when I should be in bed, trying to figure out how and if I should start this blog again. We see how well it went before and I wasn't e-schooling my son just yet... Now, he is in 1st grade through a virtual school using K-12 curriculum (no kick-back here). I am going to try to restart this, some days I may not have anything to say, other days I may get too busy, but we will see what happens. Hopefully, prayerfully, it will go better than the first attempt!
With that being said... The first thing that I am going to do is share my first planner printable that I created for Dysautonomia Awareness Month (October). I recently bought a Happy Planner and love it! I am slowly getting into decorating the planner and decided that I wanted to have Dysautonomia Awareness stickers for my planner. Since I didn't figure it would be easy to find with how rarely known it is, I figured I should create my own. I didn't have a clue what I was doing when I started, but who knows I may have created a template to make more printables ;)
So here is my first printable for a Happy Planner.
Dysautonomia Awareness Stickers for Happy Planner
Free for Personal Use Only. I hope you like (some can be used without it being for Dysautonomia Awareness). Lots of turquoise as that is the awareness color.Well it is time for me to call it a night. That little boy of mine gets up early enough ;)
Thanks for checking out my new endeavor
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