Among the list of accomodations to allow myself to take a road trip, one was reducing my medication dose for the lyme/bartonella. The medication induces herxing as it kills the lyme/bartonella. This means your symptoms get worse as the toxins leave your body. Reducing the meds allowed a reduction in symptoms. I was told I can occasionally do that and give my body a break. But for the most part, I must keep the dose higher in order to attack the lyme/bartonella.
Now that I'm back from my trip, I increased my dose back to where it needs to be. Yikes. The joint pain, stiffness, chills, headache, nausea and weakness have returned. However another symptom joined and this one is very concerning. This is going to sound odd but reading and talking with others who have lyme/bartonella I also find it's somewhat common.
Typically I not only eat very healthy but I actually enjoy eating healthy. I cut out sugar, gluten, dairy and processed foods as much as possible. Organic, non-gmo, vegetables and grass-fed/antibiotic-free meats is how I eat to feel the best I can. Carbs, sugar and cheese typically gross me out because I know the harm it causes my body.
These past few days I am insanely craving carbs and pizza but especially sweets. I am feeling extremely nauseated just thinking about salad or anything healthy. Even my normal go to food of burgers is grossing me out. I am forcing myself to eat. The healthiest thing I can tolerate right now is organic... baby food! Yes, baby food.
This may sound trivial but it's very concerning. It is so imperative that I eat healthy not only because of the lyme and bartonella but because of my other conditions also. Bad food makes me flare up badly. The lyme and bartonella cause this craving so they can take over. Obviously they don't like being killed off by the meds. Sugar/carbs will feed them and thus that's all my body wants me to eat right now.
So this is brief, but since its very concerning to me, I'm just asking for prayers about this. Please pray I can eat healthy again, because I need to. Please pray the lyme and bartonella leave my body and stay away and stop making me crave sweets and carbs. Please pray that I am healed. Thank you!
Friday, October 31, 2014
Monday, October 27, 2014
Carpe Diem!
When you have a disabling chronic health condition, life changes, typically in a way that others would consider as "worse." Yes I have some very very bad health days. It's hard. It truly is life changing, not only for myself but for loved ones too. Through this however, I've learned so very much that I may not have otherwise. One thing I learned is when you have a "good" health day- seize the day! You never know how long it will last or when the next one will arrive. And that is exactly what I chose to do.
On my own, I took a road trip to Tennessee, I enjoyed about a week at my first stop, continued to my second stop, and then I took a road trip back. Praise the Lord! He kept me safe, strong and able! During this time I was asking for prayer from many and I know it is only through our great and powerful God that I could do this. As my go to verse says "I can do all things through Christ who strengthens me." Philippians 4:13
2 weeks ago I set out on the road. It was a stormy day and as soon as I got on the highway I could barely see the lines on the road. It was extremely frightening and I considered turning back. But I felt that voice inside me say, "stick with it. I've got you." I kept going. I also prayed and talked with God just about the entire way.
Doing this wasn't an easy task, but it certainly was worth it. It required numerous accommodations. First, I never could have done this if I didn't think of this first accommodation. I took a flat pillow, folded it over, and placed it on my lap while driving. That way my arms were able to rest while holding the wheel. It was still exhausting on my muscles to control the wheel, but this helped greatly. Another thing I had to do was stop every 2 hours and walk around due to my blood clot condition/risk. Also my normal of wearing compression socks- so stylish! Though the speed limit was 70 mph most of the time, I averaged about 55 or 60 because I get motion sickness. Also, I packed my own food since I need to eat organic/clean as much as possible. Though my first destination was about 9 hours away, it ended up taking me 13 hours over a period of 3 days to get there. After a few hours driving I was done for the day. My arms, legs, core and eyes needed lots of rest, and that's all the rest of my day consisted of. Most of my stuff was packed into the trunk but I made an overnight carry on bag for the way there so I only had to load and unload that, to save on my muscles and energy. Lastly, I reduced my lyme/bartonella meds in order to help prevent a bad herx- it worked! Now that I've returned, the dose has been increased and the symptoms are really bad again.
Once I was there, the first 2 days were pretty much rest days. After that I could do more but it was still my usual of go out for a bit then come back and rest. However, again I praise the Lord for being able to do what I did even if it's nowhere near "normal" because for me it was huge! We went out to eat, cooked, played games, watched movies, went to the park, went for short walks, drove through different cities and took way too many pictures lol.
I think the highlight of the trip was something I wouldn't have done had I known where it was. I get very very bad altitude sickness. I think it's related to POTS. Where I was in East Tennessee was at the base of the mountains and pretty much as high as I can go before altitude sickness kicks in. For many, altitude sickness doesn't happen until you are many thousands of feet up there. For me it kicks in probably right around 2,000 feet. Well, I really wanted to see a waterfall. But all the waterfalls were either really high up or a far hike. Both are out of question for me. So we decided to at least go to the path that leads to the waterfall and I could walk what I could and see the little river leading to it. I had no idea this path started way way way high up in the mountains!! I started feeling it just as we were driving up there. I have an ox-sat meter and my oxygen level was dropping but I was being careful and I still felt I could breathe even though it was hard. When I got out of the car my "tipping" started as I called it. Basically when this happens, it looks like you are drunk. You have a hard time walking, your legs just really don't want to move or support your weight, your core gives out and your body just tips- forward, backward, sideways. This is how it was when I was in the hospital. It's very difficult feeling the struggle of not being able to walk. But with the help of the person with me, we walked out just a little bit, took some photos, and walked back. I couldn't have done that on my own, so thank you! It was definitely a memorable day.
From being in East Tennessee, I then headed out towards the Nashville area to visit my cousin. Goodness, I had no idea I was going to have to drive through very high mountains to get there! Yikes! Again my oxygen was dropping, as I was driving. But I made it and that's what matters. Praise the Lord again! There I was able to spend some time visiting my cousin and meeting her baby for the first time. So glad to have that opportunity. And then finally I started my drive back. 13 days after leaving, I was back, but now with this adventure behind me that I set my mind out to accomplish and I did just that. Carpe Diem!
If you have a chronic health condition, don't put yourself at risk by doing something you aren't able. However, realize that we can call on God's strength at any time, and through Him, if it be in His will, we can do ALL things. Thank you all for praying for me these past 2 weeks, and thank you God for this amazing opportunity. Though I must say, I think next time, even though it comes with its own risks... I'm booking a plane ticket :)
Now it's time to rest! God bless.
Friday, October 10, 2014
Lyme Rage
Lyme rage is what they call it. "It" being what I've been going through and yeah, it's rough... not only for me but all those who come in contact with me. So, here's your warning and information on it.
Mood swings can be a symptom of lyme disease, a symptom of bartonella (the tick-born co-infection I have), a side effect of the medications I'm on, and a herxing or die off effect when the lyme and bart get killed by the meds. This ranges from aggravation and frustration to anger, having a VERY short fuse, blowing up at the stupidest little things, being emotional, break downs, horrible sad negative depressive feelings and anxiety. It's nothing like I've ever experienced before and I cannot control it. I repeat, I cannot control it. I don't know when it will come on, I don't know when it will stop. All I know is I do not feel myself and I strongly dislike feeling that way.
So please, do not take offense if I happen to abruptly chew your head off in the coming weeks, months or even years for however long it takes to get this lyme and bart to go away. I apologize in advance. It has nothing to do with you; please don't take it personally. I just pray that my friends and family and anyone I come in contact with along the way will understand this, have the patience with it, and be supportive to me. I pray that the lyme and bart actually do go away instead of stay or hide out in remission. I also pray that the lyme and bart take with them the mg, pots, candida, adrenal fatigue, etc.
What can you do? Well, my triggers for this seem to number one be stress. So if you can help me avoid stress, all the better. Negativity, criticism, judgement, control seem to be others. If I experience those things right now I seem to snap. So I guess, if you want to help me get through this, just be positive, focus on the good both with my life and when you talk to me whatever it is you are talking about. Allow me to live how I can and do what I can and help me when I can't if I want the help. Please. Don't be fake but try to help me stay focused on the good. If there are things that I really don't need to attend to or answer, just help me out by not bringing it up. This all may seem like no big deal, or it may seem like a lot, I don't know. I just know I need your help getting through this lyme and this is one way you can help. So thank you.
Lyme is so much more serious and debilitating than it's made out to be. I will have to write a post just about lyme in the near future. Until then, I've got some major plans in the works. I say major because it is compared to my life for the past 4.5 years while being sick. Heck, even if I wasn't sick, this is pretty big. So please pray with me if you will for the strength, endurance, energy, ability and right mind to not only get through this but to enjoy these plans I have coming up. I want to look back and say, wow, I actually did that! ...and then plop down on my bed and hibernate to recover.
I need to do what I can, when I can, all the while saying 'I think I can.' Because truly, with God, I can.
Thanks for your support, encouragement, love and prayers. God bless you.
Mood swings can be a symptom of lyme disease, a symptom of bartonella (the tick-born co-infection I have), a side effect of the medications I'm on, and a herxing or die off effect when the lyme and bart get killed by the meds. This ranges from aggravation and frustration to anger, having a VERY short fuse, blowing up at the stupidest little things, being emotional, break downs, horrible sad negative depressive feelings and anxiety. It's nothing like I've ever experienced before and I cannot control it. I repeat, I cannot control it. I don't know when it will come on, I don't know when it will stop. All I know is I do not feel myself and I strongly dislike feeling that way.
So please, do not take offense if I happen to abruptly chew your head off in the coming weeks, months or even years for however long it takes to get this lyme and bart to go away. I apologize in advance. It has nothing to do with you; please don't take it personally. I just pray that my friends and family and anyone I come in contact with along the way will understand this, have the patience with it, and be supportive to me. I pray that the lyme and bart actually do go away instead of stay or hide out in remission. I also pray that the lyme and bart take with them the mg, pots, candida, adrenal fatigue, etc.
What can you do? Well, my triggers for this seem to number one be stress. So if you can help me avoid stress, all the better. Negativity, criticism, judgement, control seem to be others. If I experience those things right now I seem to snap. So I guess, if you want to help me get through this, just be positive, focus on the good both with my life and when you talk to me whatever it is you are talking about. Allow me to live how I can and do what I can and help me when I can't if I want the help. Please. Don't be fake but try to help me stay focused on the good. If there are things that I really don't need to attend to or answer, just help me out by not bringing it up. This all may seem like no big deal, or it may seem like a lot, I don't know. I just know I need your help getting through this lyme and this is one way you can help. So thank you.
Lyme is so much more serious and debilitating than it's made out to be. I will have to write a post just about lyme in the near future. Until then, I've got some major plans in the works. I say major because it is compared to my life for the past 4.5 years while being sick. Heck, even if I wasn't sick, this is pretty big. So please pray with me if you will for the strength, endurance, energy, ability and right mind to not only get through this but to enjoy these plans I have coming up. I want to look back and say, wow, I actually did that! ...and then plop down on my bed and hibernate to recover.
I need to do what I can, when I can, all the while saying 'I think I can.' Because truly, with God, I can.
Thanks for your support, encouragement, love and prayers. God bless you.
Friday, October 3, 2014
If you read no other post, read this.
What if I told you all I had cancer?
You would be shocked. Depending on how close to you I am, your heart might drop, you might cry. It would be devastating. You would have sympathy, perhaps empathy, want to help out however you could. You might go do one of the walks in support, understand the financial burden. You would tell me to rest rather than push hard. You would be slightly closer to understanding what it is I'm going through because you've heard all about cancer.
I don't have cancer.
But I do have Myasthenia Gravis, POTS/Dysautonomia, Lyme Disease, Bartonella, Candida, Adrenal Fatigue, a blood clot disorder, an immune deficiency and back problems, among other "smaller" things.
So why is it that many of us with any of those conditions often feel like people don't get it, don't believe us, don't understand the seriousness of the condition, and sometimes even don't really care?
I think a major answer to that question is awareness. And diving even deeper through that is why isn't there awareness? That answer in itself flares off into many different directions. We need to stop believing the lies and start doing our own research. We need to stop doubting the people going through these conditions and believe their word and show support. We need to treat everyone with the empathy, care and grace we show to those who have cancer, whether or not we have any illness at all.
I am not downplaying the seriousness of cancer. Rather I am trying to educate you on the seriousness of other illnesses that are out there. I'm focusing on the ones I have because those are the ones I know, and they keep adding up. The more we are aware, the less ignorant we are and the more we can relate to others which can be followed by helping others. And I truly believe, it is in giving that we receive. Bless to be blessed.
So... quick summary for no reason other than to educate, promote awareness, remind others of what it is we deal with each and every day even though it is invisible.
Myasthenia Gravis- an autoimmune neuro muscular disease. Our body mistakenly attacks our own body- particularly the connection from the nerve to the muscle. The more we use a particular muscle, the more it attacks, thus the more we use a muscle the less we are able to use that muscle. Opposite of exercising, which is why exercise is bad for us. Along with using the muscle, heat, stress and many medications can do the same thing and make us worse. The best thing to do is rest and small amounts of activity at a time with conservation of energy. This can affect arms, legs, core, neck, vision, smiling, talking, chewing, swallowing and breathing. It is serious and it can be life threatening. It doesn't slowly progress or slowly get better, it is different every day, every hour, sometimes every minute. This is hard for people to understand, and therefore believe. No cure.
Dysautonomia particularly POTS- POTS is a type of dysautonomia. Dysautonomia is dysfunction of our autonomic nervous system. This means at any particular time any of the automatic functions of our body may go haywire- blood pressure, heart-rate, digestion, respiratory, temperature, vision, gi functioning/motility, muscles, balance, etc. POTS specifically is when standing your heart-rate skyrockets, and typically your blood pressure drops. Because of this a large number of other symptoms come along and many times people will pass out, sometimes people will have seizures. It's often times important to get some form of exercise but its also important not to stand in one place because all the blood will pool to the legs and the body will give out. Fluids and salt are some of the most important things for POTS, as well as compression socks. Some people can barely function, others have many decent days. POTS is a syndrome so there is usually an underlying condition that brought it on but very often that condition is unknown. No cure but sometimes it will go away.
Lyme Disease- As I'm just starting to learn about this, I'm seeing the extreme controversy over it and due to research very much siding on the more controversial side, the side you won't hear on the news or from the doctors, the side you will probably only believe if you walk in the shoes of someone who has it. Lyme is extremely serious and can be extremely disabling. It is caused by a tick bite. You might never see the tick or know you were bitten, you may not even get the classic bullseye rash. It can affect just about any system or part in the body, affecting you both physically and mentally. It can hide and be very hard to attack. Blood tests can be pretty much worthless, and it is important to find an LLMD- a lyme specialist, often they don't take insurance because of the controversy behind it. In short, it's a nightmare. Whether there is a cure or just remission is also controversial, but to reach either is quite a struggle.
Bartonella- Also starting to learn about this one. People may think of it as the cat scratch disease which it can be but then often much more mild. My key symptoms were extremely hot feet and a rash that looked like scratches. But this also affects you very strongly/negatively both physically and mentally. This is most likely what is causing me to have mood/personality changes. Very scary. Also very hard to get rid of.
Candida- Talk about controversy, starting to wonder if I got all the controversial illnesses just so I could get the word out about them. Anyways, candida exists normally in the body in a normal amount. But antibiotics, sugar, yeast, processed foods, inhalers, steroids, etc. feed this. When it receives too much of that "food" it takes over. This again can affect just about any part/system of the body causing serious illness. Most recognized as well as mild would be thrush on the tongue. But that is nothing compared to a full blown candida infection. Blood tests are often unreliable and doctors may claim this really isn't a problem. When you've been on 50 medications in 9 months, it's a problem. I'm not claiming this to be true as I'm not 100% certain but I have read candida is what decomposes your body after you pass. So if that's true, if you have an overgrowth of candida while alive, think about what it may be doing to you. Another very very hard one to get rid of. The best way to get rid of it is to eat a clean diet of no sugar, no yeast, no processed foods, stay away from antibiotics and other medications as much as possible, and take probiotics. If it's out of control you need high dose probiotics.
Adrenal Fatigue- I honestly haven't done much research about this. What I know is my adrenals don't quite work as they should. So any stressor- whether it be physical, mental, emotional, chemical (such as fumes), allergens, sensory (noises/visual), adds up. Normal people have an empty cup and with all these stressors the cup never even reaches the top. They can handle it. With adrenal fatigue my cup is already half full or more. Each of these stressors brings me closer to the top and time and time again overflows. My body feels like it is giving out on me, I have no energy to function. I have no choice but to rest. Resting means a quiet room, most likely not a lot of noise or visual stimulation, doing absolutely nothing to allow my body to recover and be able to work again. Some people can get adrenal crisis which is a medical emergency and can be life threatening.
Blood clot disorder- the one I have means my blood clots too easily. This means I'm at higher risk of a blood clot and pulmonary embolism- life threatening blood clot in the lungs which I've already previously survived. This means I must walk every 2 hours. If I'm taking a long trip, in the hospital or getting surgery I will need to receive or give myself shots as blood thinners to help prevent the clotting.
Immune deficiency- My deficiency is in protection against pneumonia, strep, ear and sinus infections. Normal people fight these things with their immune systems. Well my immune system is a little bit broken, ok probably more than a little. I really can't fight these illnesses if I encounter them. So my only prevention is staying away from sick people. I also take vitamin c, probiotics and other supplements. Awareness of this is important because it is soooo helpful if people wash their hands, sneeze/cough into a kleenex or your shirt (not your hands!), not go out in public if you are sick, and clean/disinfect your homes. Allergies (which I have very badly to environmental stuff as well as extreme allergy to cats and some dogs) can turn into a respiratory problem which can easily turn into pneumonia for me. "Going out" isn't so easy for me.
This is my case and everyone is different, but many of us have more than one illness, and many times they don't work together. In my case, having Lyme and Bartonella right now are making my MG and POTS flare up. The medications I have to take can make them flare up also. The medications also make candida worse. For POTS, I'm supposed to get some exercise, but exercise makes MG worse. I have to move around because of the blood clot risk, but too much again makes MG worse. It's a crazy vicious cycle. For the most part, I "look" normal, but I'm far from normal. What drives us who have these conditions crazy is hearing people say "So other than MG (and/or POTS, Lyme, etc) you are healthy?" Excuse me/us? No. MG/POTS/Lyme in itself is enough but add them together, good grief, that's far from being healthy. It's an every second invisible struggle! Yet we must continue to overcome. Overcoming means getting through another day. Sometimes merely laying in bed breathing, other days blessed to be able to get out- but we never know which day we're going to get.
I guess that wasn't very quick, it also wasn't very detailed, but it's what came to mind tonight. I recently read if you want to be a writer you have to write. It's obvious but often times ignored. So, I wrote, and I hope this helps someone out there better understand these conditions. I am very glad I don't have cancer, but what I do have isn't any better.
I know October is breast cancer awareness month. Everyone knows that. But did you know October is also Dysautonomia awareness month? Please do what you can to help all of us who suffer from it. Just pass this on. Or visit this website to learn more-
http://www.dysautonomiainternational.org/page.php?ID=34
Thank you and God bless.
You would be shocked. Depending on how close to you I am, your heart might drop, you might cry. It would be devastating. You would have sympathy, perhaps empathy, want to help out however you could. You might go do one of the walks in support, understand the financial burden. You would tell me to rest rather than push hard. You would be slightly closer to understanding what it is I'm going through because you've heard all about cancer.
I don't have cancer.
But I do have Myasthenia Gravis, POTS/Dysautonomia, Lyme Disease, Bartonella, Candida, Adrenal Fatigue, a blood clot disorder, an immune deficiency and back problems, among other "smaller" things.
So why is it that many of us with any of those conditions often feel like people don't get it, don't believe us, don't understand the seriousness of the condition, and sometimes even don't really care?
I think a major answer to that question is awareness. And diving even deeper through that is why isn't there awareness? That answer in itself flares off into many different directions. We need to stop believing the lies and start doing our own research. We need to stop doubting the people going through these conditions and believe their word and show support. We need to treat everyone with the empathy, care and grace we show to those who have cancer, whether or not we have any illness at all.
I am not downplaying the seriousness of cancer. Rather I am trying to educate you on the seriousness of other illnesses that are out there. I'm focusing on the ones I have because those are the ones I know, and they keep adding up. The more we are aware, the less ignorant we are and the more we can relate to others which can be followed by helping others. And I truly believe, it is in giving that we receive. Bless to be blessed.
So... quick summary for no reason other than to educate, promote awareness, remind others of what it is we deal with each and every day even though it is invisible.
Myasthenia Gravis- an autoimmune neuro muscular disease. Our body mistakenly attacks our own body- particularly the connection from the nerve to the muscle. The more we use a particular muscle, the more it attacks, thus the more we use a muscle the less we are able to use that muscle. Opposite of exercising, which is why exercise is bad for us. Along with using the muscle, heat, stress and many medications can do the same thing and make us worse. The best thing to do is rest and small amounts of activity at a time with conservation of energy. This can affect arms, legs, core, neck, vision, smiling, talking, chewing, swallowing and breathing. It is serious and it can be life threatening. It doesn't slowly progress or slowly get better, it is different every day, every hour, sometimes every minute. This is hard for people to understand, and therefore believe. No cure.
Dysautonomia particularly POTS- POTS is a type of dysautonomia. Dysautonomia is dysfunction of our autonomic nervous system. This means at any particular time any of the automatic functions of our body may go haywire- blood pressure, heart-rate, digestion, respiratory, temperature, vision, gi functioning/motility, muscles, balance, etc. POTS specifically is when standing your heart-rate skyrockets, and typically your blood pressure drops. Because of this a large number of other symptoms come along and many times people will pass out, sometimes people will have seizures. It's often times important to get some form of exercise but its also important not to stand in one place because all the blood will pool to the legs and the body will give out. Fluids and salt are some of the most important things for POTS, as well as compression socks. Some people can barely function, others have many decent days. POTS is a syndrome so there is usually an underlying condition that brought it on but very often that condition is unknown. No cure but sometimes it will go away.
Lyme Disease- As I'm just starting to learn about this, I'm seeing the extreme controversy over it and due to research very much siding on the more controversial side, the side you won't hear on the news or from the doctors, the side you will probably only believe if you walk in the shoes of someone who has it. Lyme is extremely serious and can be extremely disabling. It is caused by a tick bite. You might never see the tick or know you were bitten, you may not even get the classic bullseye rash. It can affect just about any system or part in the body, affecting you both physically and mentally. It can hide and be very hard to attack. Blood tests can be pretty much worthless, and it is important to find an LLMD- a lyme specialist, often they don't take insurance because of the controversy behind it. In short, it's a nightmare. Whether there is a cure or just remission is also controversial, but to reach either is quite a struggle.
Bartonella- Also starting to learn about this one. People may think of it as the cat scratch disease which it can be but then often much more mild. My key symptoms were extremely hot feet and a rash that looked like scratches. But this also affects you very strongly/negatively both physically and mentally. This is most likely what is causing me to have mood/personality changes. Very scary. Also very hard to get rid of.
Candida- Talk about controversy, starting to wonder if I got all the controversial illnesses just so I could get the word out about them. Anyways, candida exists normally in the body in a normal amount. But antibiotics, sugar, yeast, processed foods, inhalers, steroids, etc. feed this. When it receives too much of that "food" it takes over. This again can affect just about any part/system of the body causing serious illness. Most recognized as well as mild would be thrush on the tongue. But that is nothing compared to a full blown candida infection. Blood tests are often unreliable and doctors may claim this really isn't a problem. When you've been on 50 medications in 9 months, it's a problem. I'm not claiming this to be true as I'm not 100% certain but I have read candida is what decomposes your body after you pass. So if that's true, if you have an overgrowth of candida while alive, think about what it may be doing to you. Another very very hard one to get rid of. The best way to get rid of it is to eat a clean diet of no sugar, no yeast, no processed foods, stay away from antibiotics and other medications as much as possible, and take probiotics. If it's out of control you need high dose probiotics.
Adrenal Fatigue- I honestly haven't done much research about this. What I know is my adrenals don't quite work as they should. So any stressor- whether it be physical, mental, emotional, chemical (such as fumes), allergens, sensory (noises/visual), adds up. Normal people have an empty cup and with all these stressors the cup never even reaches the top. They can handle it. With adrenal fatigue my cup is already half full or more. Each of these stressors brings me closer to the top and time and time again overflows. My body feels like it is giving out on me, I have no energy to function. I have no choice but to rest. Resting means a quiet room, most likely not a lot of noise or visual stimulation, doing absolutely nothing to allow my body to recover and be able to work again. Some people can get adrenal crisis which is a medical emergency and can be life threatening.
Blood clot disorder- the one I have means my blood clots too easily. This means I'm at higher risk of a blood clot and pulmonary embolism- life threatening blood clot in the lungs which I've already previously survived. This means I must walk every 2 hours. If I'm taking a long trip, in the hospital or getting surgery I will need to receive or give myself shots as blood thinners to help prevent the clotting.
Immune deficiency- My deficiency is in protection against pneumonia, strep, ear and sinus infections. Normal people fight these things with their immune systems. Well my immune system is a little bit broken, ok probably more than a little. I really can't fight these illnesses if I encounter them. So my only prevention is staying away from sick people. I also take vitamin c, probiotics and other supplements. Awareness of this is important because it is soooo helpful if people wash their hands, sneeze/cough into a kleenex or your shirt (not your hands!), not go out in public if you are sick, and clean/disinfect your homes. Allergies (which I have very badly to environmental stuff as well as extreme allergy to cats and some dogs) can turn into a respiratory problem which can easily turn into pneumonia for me. "Going out" isn't so easy for me.
This is my case and everyone is different, but many of us have more than one illness, and many times they don't work together. In my case, having Lyme and Bartonella right now are making my MG and POTS flare up. The medications I have to take can make them flare up also. The medications also make candida worse. For POTS, I'm supposed to get some exercise, but exercise makes MG worse. I have to move around because of the blood clot risk, but too much again makes MG worse. It's a crazy vicious cycle. For the most part, I "look" normal, but I'm far from normal. What drives us who have these conditions crazy is hearing people say "So other than MG (and/or POTS, Lyme, etc) you are healthy?" Excuse me/us? No. MG/POTS/Lyme in itself is enough but add them together, good grief, that's far from being healthy. It's an every second invisible struggle! Yet we must continue to overcome. Overcoming means getting through another day. Sometimes merely laying in bed breathing, other days blessed to be able to get out- but we never know which day we're going to get.
I guess that wasn't very quick, it also wasn't very detailed, but it's what came to mind tonight. I recently read if you want to be a writer you have to write. It's obvious but often times ignored. So, I wrote, and I hope this helps someone out there better understand these conditions. I am very glad I don't have cancer, but what I do have isn't any better.
I know October is breast cancer awareness month. Everyone knows that. But did you know October is also Dysautonomia awareness month? Please do what you can to help all of us who suffer from it. Just pass this on. Or visit this website to learn more-
http://www.dysautonomiainternational.org/page.php?ID=34
Thank you and God bless.
Wednesday, October 1, 2014
Prayer request for a scary situation
Today starts Dysautonomia Awareness Month. I will make a post to explain that, but for now I just have a quick update with prayer request.
If you've been following along, you know I've recently added Lyme Disease and Bartonella to my list of diagnoses. Treatment started about 3 weeks ago with the sudden onset of horrible symptoms, but there was an additional medication added just this past Monday. Since then, I've been affected mentally/emotionally. My mood has been very different- very easily agitated, very impatient, short fuse, angry but then also easily emotional, moments of anxiety/jittery, and then sometimes sparks of feeling like I can do many things at once and take on the world. It's scary and I don't like it one bit. This isn't normal me. The only way I've been mentally affected in the past has been with short term memory issues, word recall and just overall brain fog. I can handle that. This, not so much.
Here's the thing. We can't know for certain what is causing this. Is it "lyme rage" as they call it, a symptom of lyme? Is it the bartonella? Is is the herxing- which is when the lyme and/or bartonella are being killed off and it causes increased symptoms? Or is it what is listed as a serious side effect to this medication? Or the other medication? My thought is it's from this medication-whether be a side effect or a die off effect of the bartonella I am not sure.
I've already spoken with my doctor and he is aware of this. Today I'm not taking this med. Tomorrow we will start again with one a day instead of two a day. He said if my mood gets normal and stays that way for a week we can stay on this. If not, we have to come off of this, and try a new med.
As much as I want nothing to do with this med, I do want it to work and be able to tolerate what it does to me. Not only because it was expensive but because every new medication I have to take causes a new risk, and there are already too many medications out there that I cannot tolerate.
The whole thing is pretty scary. To feel like you don't have much control over your own mind. So please, if you will join me in prayer that whatever it is affecting me mentally and emotionally, and well physically too, it all just goes away. The lyme goes away, the bartonella goes away, as well as the MG, POTS, etc etc. Lord, just please make me healthy, whole and renewed in You. I can do this only because of You. Philippians 4:13. It's in Jesus' name I pray. Amen.
Thank you and God bless.
If you've been following along, you know I've recently added Lyme Disease and Bartonella to my list of diagnoses. Treatment started about 3 weeks ago with the sudden onset of horrible symptoms, but there was an additional medication added just this past Monday. Since then, I've been affected mentally/emotionally. My mood has been very different- very easily agitated, very impatient, short fuse, angry but then also easily emotional, moments of anxiety/jittery, and then sometimes sparks of feeling like I can do many things at once and take on the world. It's scary and I don't like it one bit. This isn't normal me. The only way I've been mentally affected in the past has been with short term memory issues, word recall and just overall brain fog. I can handle that. This, not so much.
Here's the thing. We can't know for certain what is causing this. Is it "lyme rage" as they call it, a symptom of lyme? Is it the bartonella? Is is the herxing- which is when the lyme and/or bartonella are being killed off and it causes increased symptoms? Or is it what is listed as a serious side effect to this medication? Or the other medication? My thought is it's from this medication-whether be a side effect or a die off effect of the bartonella I am not sure.
I've already spoken with my doctor and he is aware of this. Today I'm not taking this med. Tomorrow we will start again with one a day instead of two a day. He said if my mood gets normal and stays that way for a week we can stay on this. If not, we have to come off of this, and try a new med.
As much as I want nothing to do with this med, I do want it to work and be able to tolerate what it does to me. Not only because it was expensive but because every new medication I have to take causes a new risk, and there are already too many medications out there that I cannot tolerate.
The whole thing is pretty scary. To feel like you don't have much control over your own mind. So please, if you will join me in prayer that whatever it is affecting me mentally and emotionally, and well physically too, it all just goes away. The lyme goes away, the bartonella goes away, as well as the MG, POTS, etc etc. Lord, just please make me healthy, whole and renewed in You. I can do this only because of You. Philippians 4:13. It's in Jesus' name I pray. Amen.
Thank you and God bless.
Subscribe to:
Comments (Atom)