It's amazing how much I can roller coaster. For the last month I've been in the very low part of the coaster. I keep thinking I'm at the bottom and I'll start going up again soon, but in the last few days I did get lower. Oi! I'm working on my second cup of black tea this morning. I woke up at 5 am and then again at 9 am with a powerful headache on the top of my neck. It wasn't that I was struggling to keep my eyes open, it was that it was physically painful to be awake. Not grogginess, just very low energy and strain in my head and eyes. There was no going back to sleep though. I have been taking naps in the afternoon the last few days as well, and I normally (95% of the time) cannot nap during the day (or even fall asleep naturally at night). I have just been overcome with heavy weakness, brain thoughts coming to a grinding halt, and an exhaustion that lulls me to sleep. It's actually nice to feel real sleepiness - I forgot what it felt like.
45 minutes ago I wouldn't have had the strength to sit at my computer and type. I'm not feeling good yet, but I'm sitting cross-legged on my chair and reclining, which is just enough to help me manage. But you know what relieved my headache? Not caffeine this time. A shower that was as hot as I could tolerate. I sat down and let the near-scalding water hit my neck. I could feel a rush of blood to my head (but I was too tired to hear Coldplay sing in my head) and the headache lifted. Then I got out of the shower and it started to come back. Then I ate some meat and it started to go away. This feels like a low blood pressure and low blood sugar kind of day, but I've been way too tired to bother to check either. I did see a doctor a few days ago and my blood pressure was something like 90/65 - I had a narrow pulse pressure. And they had my talking a lot as they took the blood pressure, so I'm sure at rest it was lower. I also had to get labs drawn and the first nurse totally gave up on me. She couldn't find a vein, so she put a hot pack on my elbow. It didn't help, and my hands remained purple and ice cold. So she got another nurse to come in. That nurse had the same problem, but she decided to just push the needle in my elbow and move it around until blood came out. Ouch, yes, that hurt. She had to go deep too.
I'm starting to give myself a stomach ache with this tea... and energy is not affected at all. All I know is I have to be ready to go to work in 1 hour and 45 minutes. Not entirely sure if my body will cooperate. I can't stand up long without POTS kicking in and making me collapse to the floor. So here's to hoping compression socks, more salt and licorice herb, more food, more caffeine, and being forced to move a lot help.
Showing posts with label blood pressure. Show all posts
Showing posts with label blood pressure. Show all posts
Tuesday, February 4, 2020
Sunday, May 27, 2018
Metaprolol Experience
In this post I explained that I was diagnosed with POTS and put on a beta blocker to manage it. I'll go into some detail on this post about what it did for me and to me.
I was prescribed Metoprolol Extended Release 25 mg. I was not allergic to any ingredients in this option, but the regular non-extended release version contained lactose. I don't know how a small amount of lactose in the pill would affect me, but I do not do well with dairy at all. The advantage of the extended release version is that I only take one pill a day, but the disadvantage is being unable to cut the pill in half if the dose is too high. I think I would have been better off with the regular version, taking a couple a day, because I think I would have responded better if I had been able to cut the pills in half and work my dosage up. In the end, however, my doctor and I decided it's not the right drug for me.
Beta Blockers lower your heart rate, so it made perfect sense to try it. What I didn't know at first was that it also lowers blood pressure. If you have low blood pressure then I'm warning you against Metoprolol.
I decided to take it at night since it makes me sleepy. The first night I took it I had vivid terrible nightmares. When I woke up I felt all the symptoms of low blood pressure: eye pressure, headache, weak, freezing cold, and out of breath. I took my blood pressure. I can't remember specifics, but I remember it was in the upper 80's over lower 50's. My heart rate wasn't any lower. Through the day my blood pressure ran low, but slowly improved until it was back to my average 100/60 in the evening.
The second night I didn't have the nightmares, but it started to make me feel slightly more depressed and darker than usual. I did wake up, again, with low blood pressure, and once again my heart rate wasn't any better. My toes were dark purple and icy most of the day. I was starting to feel even worse going from sitting or laying to standing. Normally I feel POTS symptoms about 50% of the time when I get up, but it was turning into 100% of the time with increased symptoms (mainly extra dizziness with bright light colors spinning around me longer than normal.)
By the 4th day my blood pressure wasn't quite as bad, but still around 92/55 most of the day (that was one measurement I have recorded.) My heart rate, however, was down to the 50's at rest. My average resting heart rate is 88, so that's a big drop for me. Upon standing it was going up to the 80's to 110 range. So even though my resting heart rate was lower, it didn't fix the POTS. By the 5th and 6th days the deep purple and ice cold in my toes had overtaken my feet and shins. By the 6th day my resting heart rate was back up into the 70's and 80's most of the time with a few periods of it being in the 50's. It wasn't consistent. That isn't so bad, but I was going into the 120's and 130's when standing up. The other issue is that my fibromyalgia was coming back in a big way. My leg muscles and shoulders were getting achy, tender, and felt like acid. I lost my ability to control the muscle pain.
I took it for 8 days total, and I never improved more than that. I asked my cardiologist his thoughts on this and he said it wasn't doing what it needed to, and the side effects were not worth it. So he told me to stop. He said I might be better off being untreated based on how I reacted to it. There are other options I could try, like Calcium Channel Blockers, but he didn't suggest it. He said because my heart itself isn't in danger and it's working well, I should be okay without treatment. I'm also not a fainter. If I were a fainter it might be important to try something else. But for me POTS is a cause of fatigue, pain, discomfort, and exercise intolerance. It's annoying and draining, but not damaging... we think. I'm not sure I'm ready to try the next thing anyway... exhausted from all the changes to my body!
Metoprolol was a teaching experience. Without it I feel fatigued all the time from being too revved up all the time. On it, I felt the same level of fatigue from not being able to rev up at all. It felt different. It might have been better for my body to be more calm on it, but it made it just as hard for me to function. I think I had less adrenaline to help me function while on it too.
So I'm going to do what I have been doing that seems to help: extra salt, electrolytes added in all water and tea I drink, licorice root as needed for low blood pressure, green tea as needed to cut down on fatigue (other sources of caffeine make me worse, but green tea does help), and going for walks as often as I can tolerate. I may want to try other prescriptions in the future, but I have a feeling I don't tolerate any prescriptions well due to my chemical sensitivities. I haven't had lucky on any so far for any condition...
Best part of getting off Metoprolol? My feet can feel the sun again and it feels good! They were so ice cold not even the sun would warm them up! They still turn purple from blood pooling, which is helped by elevating my feet, but not the dark purple and numbness that Metoprolol caused.
I was prescribed Metoprolol Extended Release 25 mg. I was not allergic to any ingredients in this option, but the regular non-extended release version contained lactose. I don't know how a small amount of lactose in the pill would affect me, but I do not do well with dairy at all. The advantage of the extended release version is that I only take one pill a day, but the disadvantage is being unable to cut the pill in half if the dose is too high. I think I would have been better off with the regular version, taking a couple a day, because I think I would have responded better if I had been able to cut the pills in half and work my dosage up. In the end, however, my doctor and I decided it's not the right drug for me.
Beta Blockers lower your heart rate, so it made perfect sense to try it. What I didn't know at first was that it also lowers blood pressure. If you have low blood pressure then I'm warning you against Metoprolol.
I decided to take it at night since it makes me sleepy. The first night I took it I had vivid terrible nightmares. When I woke up I felt all the symptoms of low blood pressure: eye pressure, headache, weak, freezing cold, and out of breath. I took my blood pressure. I can't remember specifics, but I remember it was in the upper 80's over lower 50's. My heart rate wasn't any lower. Through the day my blood pressure ran low, but slowly improved until it was back to my average 100/60 in the evening.
The second night I didn't have the nightmares, but it started to make me feel slightly more depressed and darker than usual. I did wake up, again, with low blood pressure, and once again my heart rate wasn't any better. My toes were dark purple and icy most of the day. I was starting to feel even worse going from sitting or laying to standing. Normally I feel POTS symptoms about 50% of the time when I get up, but it was turning into 100% of the time with increased symptoms (mainly extra dizziness with bright light colors spinning around me longer than normal.)
By the 4th day my blood pressure wasn't quite as bad, but still around 92/55 most of the day (that was one measurement I have recorded.) My heart rate, however, was down to the 50's at rest. My average resting heart rate is 88, so that's a big drop for me. Upon standing it was going up to the 80's to 110 range. So even though my resting heart rate was lower, it didn't fix the POTS. By the 5th and 6th days the deep purple and ice cold in my toes had overtaken my feet and shins. By the 6th day my resting heart rate was back up into the 70's and 80's most of the time with a few periods of it being in the 50's. It wasn't consistent. That isn't so bad, but I was going into the 120's and 130's when standing up. The other issue is that my fibromyalgia was coming back in a big way. My leg muscles and shoulders were getting achy, tender, and felt like acid. I lost my ability to control the muscle pain.
I took it for 8 days total, and I never improved more than that. I asked my cardiologist his thoughts on this and he said it wasn't doing what it needed to, and the side effects were not worth it. So he told me to stop. He said I might be better off being untreated based on how I reacted to it. There are other options I could try, like Calcium Channel Blockers, but he didn't suggest it. He said because my heart itself isn't in danger and it's working well, I should be okay without treatment. I'm also not a fainter. If I were a fainter it might be important to try something else. But for me POTS is a cause of fatigue, pain, discomfort, and exercise intolerance. It's annoying and draining, but not damaging... we think. I'm not sure I'm ready to try the next thing anyway... exhausted from all the changes to my body!
Metoprolol was a teaching experience. Without it I feel fatigued all the time from being too revved up all the time. On it, I felt the same level of fatigue from not being able to rev up at all. It felt different. It might have been better for my body to be more calm on it, but it made it just as hard for me to function. I think I had less adrenaline to help me function while on it too.
So I'm going to do what I have been doing that seems to help: extra salt, electrolytes added in all water and tea I drink, licorice root as needed for low blood pressure, green tea as needed to cut down on fatigue (other sources of caffeine make me worse, but green tea does help), and going for walks as often as I can tolerate. I may want to try other prescriptions in the future, but I have a feeling I don't tolerate any prescriptions well due to my chemical sensitivities. I haven't had lucky on any so far for any condition...
Best part of getting off Metoprolol? My feet can feel the sun again and it feels good! They were so ice cold not even the sun would warm them up! They still turn purple from blood pooling, which is helped by elevating my feet, but not the dark purple and numbness that Metoprolol caused.
Wednesday, April 11, 2018
Norovirus is No Joke
Here's the short version:
I got Norovirus and it lasted for 5 days. It ranked in the top 3 worst pain experiences of my life. I'm too drained to recover easily. My stomach and gut are not back to normal and are very picky about what food and in what amount and when I eat it. I'm emotionally dead and deeply depressed. I finally had my appointment with my new local primary care doctor since I need an MD on my record, and she's sending me to a gynecologist and a cardiologist.
...I feel like this is just leading to a repeat of 2013 all over again. Lots of money getting thrown at doctors who likely will just tell me I'm normal and it's all in my head. I wonder why I bother, then I remember my disability case, and I remember that I'm supposed to be hounding lawyers until someone takes my case. Yeah, well, give me some magic pill to return me to good health if you want me to try harder to get a lawyer. If I want to ever get government assistance then I need MDs, not NDs, to diagnose me. But it's the ND that actually helps me.
Am I being too honest if I say I either want to be able to live without all these health problems or just die? Does that make you uncomfortable? Sorry, my filters are full and can't filter anything else. It's all I can think about. I can't enjoy the things that normally make me happy. I'm pushing my friends away because I don't have any energy at all for them. I'm just blank. I'm emotionally dead. My body feels like an empty shell. There's no energy or life in me. Norovirus took what I had left. 2 days of vomiting, diarrhea, and horrid skin aching and tenderness. 2 more days of just diarrhea and skin pain, Another day of just diarrhea. Any fuel or qi or life energy that I had left is gone. I'm not suicidal, I just don't want to take part in anything in life. Any appointment, commitment, phone call, email... it's too demanding. Wants too much of me. I can feel a pool of anger and resentment somewhere in me, and if that's the only emotion my body will give me then I really need to stay away from people.
I'm going to a gynecologist because I can't stop bleeding in heavy amounts. It's been 2 months of bleeding almost every day. I tried some herbs from my acupuncturist to stop the bleeding. One of them did reduce the bleeding without side effects. The other seemed to stop the bleeding for a few days, but gave me such low blood pressure that I spent the whole day trying to keep my head upside down to manage the headache and painful blurry vision. I know I'm very blood deficient. She gave me herbs to boil and drink to improve my blood, but I haven't yet because of Easter taking over and then getting Norovirus. But seriously, puking my stomach and flushing my guts out when I'm already blood deficient? Why does my body choose to live through these things? Why does it hold on to life? And why don't doctors see that I'm suffering so severely that I'm not able to actually live any sort of life? It's mind blowing. My ND sees it. My acupuncturist sees it. My chiropractor doesn't question it. The neurologist I saw seemed to believe me, but he's so far away and I think he did what he can do within his specialty.
Trying to eat is a major problem. My stomach and gut are so sensitive that I have to figure out exactly the right thing to feed them, and then when I do I can only manage a couple of bites before I get pain and feeling overly full. Yesterday eating a baked sweet potato with just olive oil and salt worked. Today sweet potato is cramping my stomach. Chicken broth the super soft canned chicken is working consistently, but only until my stomach can't take more liquid. It's being just as picky about water. I feel dehydrated, but water feels like a bowling ball in my stomach. Last night I wasn't able to eat for 5 hours before it was bedtime. I knew I'd get pain from hunger if I didn't eat, so I tried to eat some very soft non-greasy sausage. I managed about 3 bites before I got major pain in my stomach. My gut was so inflamed it was giving me a horrid headache. I had to just go to sleep and sleep it off. Enzymes are helping to a certain point. I know that if I could turn my digestive system back on that I might actually be able to get some energy again... I feel like I'm gaining a tiny bit back everyday, but it's not enough. I wouldn't be able to type this right now if not for the green tea I've been sipping on all morning and the tiny bit of energy I'm getting back each day.
I'm going to attempt to go to work today for 3 hours. I'm lucky that I was only scheduled for a 3 hour shift today before I knew this was going to happen. I've missed 3 or 4 shifts already, so I need to try.
I got Norovirus and it lasted for 5 days. It ranked in the top 3 worst pain experiences of my life. I'm too drained to recover easily. My stomach and gut are not back to normal and are very picky about what food and in what amount and when I eat it. I'm emotionally dead and deeply depressed. I finally had my appointment with my new local primary care doctor since I need an MD on my record, and she's sending me to a gynecologist and a cardiologist.
...I feel like this is just leading to a repeat of 2013 all over again. Lots of money getting thrown at doctors who likely will just tell me I'm normal and it's all in my head. I wonder why I bother, then I remember my disability case, and I remember that I'm supposed to be hounding lawyers until someone takes my case. Yeah, well, give me some magic pill to return me to good health if you want me to try harder to get a lawyer. If I want to ever get government assistance then I need MDs, not NDs, to diagnose me. But it's the ND that actually helps me.
Am I being too honest if I say I either want to be able to live without all these health problems or just die? Does that make you uncomfortable? Sorry, my filters are full and can't filter anything else. It's all I can think about. I can't enjoy the things that normally make me happy. I'm pushing my friends away because I don't have any energy at all for them. I'm just blank. I'm emotionally dead. My body feels like an empty shell. There's no energy or life in me. Norovirus took what I had left. 2 days of vomiting, diarrhea, and horrid skin aching and tenderness. 2 more days of just diarrhea and skin pain, Another day of just diarrhea. Any fuel or qi or life energy that I had left is gone. I'm not suicidal, I just don't want to take part in anything in life. Any appointment, commitment, phone call, email... it's too demanding. Wants too much of me. I can feel a pool of anger and resentment somewhere in me, and if that's the only emotion my body will give me then I really need to stay away from people.
I'm going to a gynecologist because I can't stop bleeding in heavy amounts. It's been 2 months of bleeding almost every day. I tried some herbs from my acupuncturist to stop the bleeding. One of them did reduce the bleeding without side effects. The other seemed to stop the bleeding for a few days, but gave me such low blood pressure that I spent the whole day trying to keep my head upside down to manage the headache and painful blurry vision. I know I'm very blood deficient. She gave me herbs to boil and drink to improve my blood, but I haven't yet because of Easter taking over and then getting Norovirus. But seriously, puking my stomach and flushing my guts out when I'm already blood deficient? Why does my body choose to live through these things? Why does it hold on to life? And why don't doctors see that I'm suffering so severely that I'm not able to actually live any sort of life? It's mind blowing. My ND sees it. My acupuncturist sees it. My chiropractor doesn't question it. The neurologist I saw seemed to believe me, but he's so far away and I think he did what he can do within his specialty.
Trying to eat is a major problem. My stomach and gut are so sensitive that I have to figure out exactly the right thing to feed them, and then when I do I can only manage a couple of bites before I get pain and feeling overly full. Yesterday eating a baked sweet potato with just olive oil and salt worked. Today sweet potato is cramping my stomach. Chicken broth the super soft canned chicken is working consistently, but only until my stomach can't take more liquid. It's being just as picky about water. I feel dehydrated, but water feels like a bowling ball in my stomach. Last night I wasn't able to eat for 5 hours before it was bedtime. I knew I'd get pain from hunger if I didn't eat, so I tried to eat some very soft non-greasy sausage. I managed about 3 bites before I got major pain in my stomach. My gut was so inflamed it was giving me a horrid headache. I had to just go to sleep and sleep it off. Enzymes are helping to a certain point. I know that if I could turn my digestive system back on that I might actually be able to get some energy again... I feel like I'm gaining a tiny bit back everyday, but it's not enough. I wouldn't be able to type this right now if not for the green tea I've been sipping on all morning and the tiny bit of energy I'm getting back each day.
I'm going to attempt to go to work today for 3 hours. I'm lucky that I was only scheduled for a 3 hour shift today before I knew this was going to happen. I've missed 3 or 4 shifts already, so I need to try.
Wednesday, February 28, 2018
December Doctor Appointments Part 2
I got thrown so off balance from that trip that it's nearly March and I'm still trying to reclaim my balance and stability. Going off all my supplements and cheating a bit on my diet really upset my body. It's been a roller coaster ride of extra long PMS (about half the month), mood swings including total lethargy/ apathy and depression, weight gain, fibromyalgia flares like I used to get before going to see my doctor for the first time, inflammation and sore joints, lots of gut irritability, extra dry peeling skin, increased sensitivity to light and sound, feeling jumpy and easily startled, continued palpations...
But honestly, the worst of all has been my temperature issues. I've been freezing to the point of shaking while sitting in an extra hot bath or in front of the space heater. My skin will turn red or swear, but I still feel hypothermic internally. I can't even feel the heat on my skin sometimes. Other times I'll feel like I'm running a fever, but if I let my skin be exposed to the air my skin will freeze. It's torture - I can't feel comfortable!
In the last few weeks I've started to have what I think are increasing histamine issues. Any food I eat is leaving my skin itchy with occasional small hives or welts, but worse than that is it leaves me fidgety. I can't sit still without feeling the need to squirm, like ants crawling in my blood stream.
Over the past week I've been fighting low blood pressure too, to the point that even salt and licorice aren't helping enough. Exercise raises my systolic about 5 points, but not my diastolic. I question the accuracy of my blood pressure machine a little bit, but it hasn't given me a reading over 95/55. The thing is... the readings feel accurate. I never feel truly sleepy - "tired" to me feels like I'm overspent but still have to burn off a chocolate bar before I can fall asleep (I don't eat sugar.) This week I've been feeling so sleepy often, and caffeine is making it worse. I'm fairly confident I crashed my adrenals. Again.
I'm fighting to regain stability. My body was really relying on my supplements and diet, and now I'm afraid to even consider stopping them again.
So was it worth it? The not taking my supplements and cheating on my diet for weeks so I could see a neurologist?
Well... I don't know yet. Dr. Cohen was great to work with, I really respect him. I don't have conclusive results from the testing yet, though. Based on the Zio Patch results he wants me to go see a cardiologist. I'm going to go, but I can't afford to go quiet yet. I also want winter to be over before I do more traveling. I've seen lots of cardiologists in my life for my Pulmonary Stenosis, and I'm tired of hearing the same thing from each one: "Not quite normal, but you're okay, I think, so just come back in a year to redo the tests." I think it's finally time to see a specialist - a cardiologist who is Dysautonomia literate. A cardiologist who can explain my heart rate issues. Someone who can actually tell me what's not quite normal and what to do about it.
I think what was worth it was getting the Zio Patch test done so that a cardiologist can worth with me right away rather than just doing more testing. My Zio Patch showed some issues. But I also have some issues with it.
The problem is that I clicked the button to record a symptom way more than it says. I was told on the phone that I didn't click the button during some of my heart's biggest results, therefore it wasn't considered to be problematic on my test results. The problem is, I'm fairly sure the Zio Patch only recorded about half of my button presses, so I'm willing to bet I did actually press the button during those times. It infuriates me. Their diary log for why I pressed buttons wasn't large enough, so I included a note page full of why I pressed the button. That note page was clearly ignored. But the results I do have do show problems. I just don't know if these results are concerning enough to get a cardiologist to take me seriously.
So no, I'm not sure if it was worth it yet. Either way, the Zio Patch left me a horribly itchy nasty rash for 2 weeks after I took it off, and that was tormenting at times. The rash crawled up into my neck and arm pits, so it wasn't possible to just ignore. So I need the results to be worth it to make up for that rash! :)
As for my other tests...
Lyme testing showed a past mycoplasma infection and one or two bands positive for Lyme - can't remember and can't find results. Either way, 3 bands are needed for a Lyme diagnoses. Yes, I did do the Quest testing, not the Igenix. It's very possible this test wasn't sensitive enough, I know. I chose to do the Quest testing knowing all this due to cost and availability. I knew it might only be a starting point.
The echo? Well no one ever contacted me to give me results. My doctor said he was told the results didn't show some other disease. The nurse that performed the echo was the only person to tell me he saw the valve with the Pulmonary Stenosis. So I know it's still there, at least. I'm hoping that the cardiologist I see can review the results for me.
Up next is my hearing with the judge for my disability case. 2.5 years of appeals are leading to this hearing. I don't have much conclusive evidence to present to them, just lots of doctor visits and labs. I know people who have won with less diagnoses than I have, but I highly doubt I'll win - at least not here in North Dakota. They don't normally give disability to people under age 50 because they say "young people are resilient." I'm not totally bedridden or in a coma, so therefore I can do some type of work. They have no understanding of how disabling chronic fatigue is, and it's been very obvious through the whole case. I keep arguing about the fatigue (and I am officially diagnosed with it), but they kept denying me saying the fatigue isn't "severe enough." They don't have a clue, and they're not trying to listen to my doctors or look at me themselves. I'm ready for it to be over. The stress the case has caused me has not helped at all. I often wish I never applied at all. I felt pressured into trying to do something for our financial situation, but this case has been more work than I've been able to handle.
Anyway, I'll update this blog when I have a plan for the cardiologist... yay... I'm so exhausted. I just want my life back. I don't want my life to be about my health anymore. Tired of this. I just want to be a person that can work towards life goals and dreams again. I want kids, I want to own a house, I want to be able to brag about achievements in my career... I want a career... yeah. I'm tired of this.
Friday, November 17, 2017
Upcoming Medical Appointments and Symptom List
It upsets me that I have so much I really want to write about in this blog, but I just can't find the energy. I've been very surprised and humbled by how many views my posts are getting. Thank you so much for the support, and I very much hope that what I'm sharing helps you!
I just can't find the energy to reply to people I really care about on Facebook messenger. I'm too brain dead. I rarely watch TV on my own because I'd rather be doing something, and so video games help me relax while being interactive, but lately I've found myself watching more and more because it allows me to just lay on the couch and zone out. My games are calling to me to be played, but I know I can't think well enough to enjoy them. So please understand that I'm not ignoring anyone - I'm just trying to make it day by day, waiting for a time when I feel up to replying to messages or writing a blog post. I'm not even up to blogging right now, but people are asking about me, so I wanted to explain.
I'm tapering off all my pills again for some doctor appointments next month. I'm going to see a Cardiologist for a Tilt Table test to officially test for POTS and an Echocardiogram to monitor my Pulmonary Stenosis (heart murmur I was born with that never "went away.") Then I'm seeing a Neurologist for POTS and Chronic Fatigue, and he's going to run a nerve conduction test. Then I'm going to see my Naturopathic doctor (Dr. Bier at HumanNatureNaturalHealth.com) for an exam and treatments. I have to be at my worst for the Tilt Table test, which means I need to taper off my pills that help me manage my day-to-day life. It also means I need to stop seeing the Chiropractor since adjustments do help my symptoms subside for a little while.
Needless to say, this is leaving me exhausted: the stress of planning the trip to New Hampshire to see these doctors alone is too much stress. Finding an AirBNB that is fragrance-free, finding plane tickets, figuring out how to pack light for a trip in the winter... my parents have done most of the work and it's still too much stress for me. Oh, and how could I forget how difficult and time consuming it was to get the appointments scheduled? I felt bad for how much work I put my doctor through to get me these appointments. Now I have to call Disability to move my hearing, which is going to be a giant headache... and I honestly haven't had it in me to make the phone call yet. My appointments only worked out on the day that my hearing is scheduled for. I'm planning on making that phone call after my tea kicks in. Or why couldn't I just do it over Skype? My hearing is set to be a teleconference over a TV anyway...
In the midst of all this, the motor and pump on our dishwasher broke, and it was out of commission for almost 2 weeks. Thankfully the warranty covered the repair!
I'm also trying to manage at work through all of this - my goal has been to not lose any shifts. This is challenging. As long as my matcha powder in my water keeps giving me the strength to work, I can work. When the caffeine isn't enough, I can't do it. And I'm getting more and more vertigo without taking my b12. I took one b12 the other day because the vertigo was too strong for me to be able to drive myself to work. The b12 killed the vertigo - it worked. But I'm not supposed to be taking it. So I'm getting really nervous about working, but I can't afford not to. I have to save ALL of my strength and energy for work, which means chores at home are not getting done. My mom was really helpful and very nice and came to stay with us twice so she could do chores for me. My husband works so much that he shouldn't have to do any, and I don't want him to lose his health from overworking.
I'm really struggling - if only I stopped having things I had to do. If work was my only obligation I could make it. But things I have to do keep coming on, one thing after the other. Why can't I just rest? Why is everything full of phone calls and paperwork? Every day I have to accomplish SOMETHING... it's always SOMETHING. I'm not well enough to do all of this. I wish I had a disability lawyer hired to handle it all for me... but the work of getting a lawyer is way too overwhelming. Even if I get diagnosed, I don't think I'll win disability. North Dakota doesn't like to give it to people under age 50 because, and I quote, "Young people are resilient." You have no idea how angry this makes me. When I finally figure out how to recover and improve my health I'm going to fight this notion in our local government and strive to educate our judges. If I was resilient then I wouldn't have a health problem worth asking for disability over now would I? I'm asking for disability BECAUSE I'm not NOT resilient enough. And that's not my fault. I didn't choose to be this sick.
I'm honestly tempted to drop my case entirely, move to another state, and try again there. North Dakota is a difficult place to live if you have medical needs, and not just because of the rough extreme weather. The weather alone makes it difficult, and healthy people just don't understand that. When you're very sensitive to pressure changes, temperature changes, and extreme temperatures, but you also have to deal with shoveling and driving in sometimes large amounts of snow and ice... it's difficult. You have to be a resilient and rugged person to live here. I used to be. But it takes energy to be, energy I no longer have. I get so much crap from people here when I get upset over several inches or more of snow - they say things like, "Suck it up, Buttercup!" or "You'll get used to it." or "The rest of us deal with it, so you can too." There was a time when I was used to it and could handle it, but dealing with it takes energy. They all have the energy, and they don't know what it's like to not have the energy. It's very insulting to me to hear things like this because I used to take pride in being able to handle the rough situations. I used to not get anxiety over a little extra hardship. They didn't know me back then, when I was healthy and could take on the world. Back when a challenge was just an opportunity to succeed. I can't think that way anymore without getting sicker.
I've been getting asked what my symptoms are that have led me to getting these tests done. Here's a non-comprehensive list:
- Dizzy and short of breath when standing up. I'll see colors spinning all around me for several seconds before things come back into focus.
- Heart pounds so hard that it makes my teeth chatter with each beat. Sometimes it feels like my heart will pop out of my neck.
- Heart palpitations, especially when laying down.
- When I measure my heart rate from laying or sitting to standing up, it often (but not always) goes up 40 or more beats per minute. Sometimes it doesn't change at all, despite feeling very weak. It also jumps all over the place when I'm laying still - it's jumped around 30 bpm when I was laying perfectly still except for breathing. It would go up and down and up and down within 30 bpm.
- Normal blood pressure is typically about 100/60, but have been down to 90/50 frequently enough. Licorice does raise it back up temporarily. After exercising my systolic tends to rise a lot, but diastolic doesn't change much.
- Sharp shooting pains in my chest. Sometimes my whole chest will feel sore like I worked out the muscles too hard.
- Vertigo that comes and goes.
- Blurred vision or very tired vision, making it so that I end up squinting when trying to keep eye contact with someone
- Constant neck and shoulder tension, sometimes so tense that it gives me an earache or toothache. I get regular muscle work done and it's not enough.
- Headache at the top of my neck that comes and goes.
- Tinnitus in my ears that frequently changes in terms of severity
- Periods of derelization and depersonalization, where reality feels like a dream that I'm not actively involved in. Like I'm viewing reality on a TV and I'm not actually in it, but have to act like I am in it... because I am.
- Adrenaline rushes and crashes. I can shake and run around like a crazy person during the adrenaline rushes, and when I crash I crash so hard that I quite honestly can't get up. I often wake up with these adrenaline rushes in the middle of the night. Very similar to anxiety attacks, but it's not anxiety.
- Legs and arms can suddenly feel like jello. They can lose strength and feel wobbly.
- Never ending bloating issues, with sharp stabbing gut pains.
- Icy cold arms and legs while my torso is sweating as though it's in a sauna.
- Sweating when I feel cold, or being freezing cold when others are comfortable in t-shirts.
- Inability to determine if temperature is safe, like when I'm doing the dishes or taking a bath I can pour water that's way too hot and not realize I'm burning until my heart rate skyrockets, my skin is bright red, and I'm sweating like crazy. Other times the water will feel way too hot and I'll sweat like crazy when it's actually colder than I normally like it.
- Pale flushed skin, sometimes associated with my skin being very tender to touch, the way skin feels when you have the flu.
- I never feel hydrated, even when I drink so much electrolyte water that my stomach wants to vomit from being over filled with water. I'm always feeling dry. Sometimes I have a problem of needing to go to the bathroom every 5 minutes, other times I'm wondering why I can't go to the bathroom more often when I feel like I'm flooding myself.
- Energy so low that it can be exhausting to just grill a steak for myself.
- Energy so low that it's difficult to hold a conversation with someone because I can't focus on listening or forming replies.
- Slurring my speech and/ or stuttering.
- Joint pain that comes and goes
- Falling asleep is really very extremely difficult, even when I'm exhausted.
- Sleep is not restful. I either wake up feeling high adrenaline that gets me moving quickly, and I crash very hard once I eat breakfast, or I take until 11 or noon to get out of bed because I'm feeling so incredibly tired.
- My tongue sometimes swells up so much it doesn't fit in my teeth.
- I can't sit with my feet on the floor without getting overly tired and weak, so I sit on chairs with them curled up towards my chest.
- I can't lay still long without getting fidgety, my body needing to move.
- I can't just sit and talk to someone over tea. I HAVE to be doing something, even if it's just playing with something in my hands, but if you want to talk to me I should be doing the dishes or cleaning something while we're talking. If I'm not moving, I crash hard and can't focus. But if I move too much I get exhausted and need to go lay down where it's quiet. So in other words, being social is draining. I like the idea of having friends, but not always the reality of spending time with friends.
- Reactive to fragrances and other synthetics, meaning: widespread muscle pain, gut cramping, heart burn, vision loss, emotional instability issues, headaches, sinus aches (I got a sinus infection from going into a very smelly Staples once), heart pounding and palpations, rashes...
- Very reactive to foods, making it so I can't cheat on my diet without paying hard for it. Hives, rashes, adrenaline surge, nervous ticks, severe anger, stomach and gut pain, very high painful heart rate, bowel and bladder control issues, muscle pain...
- Mold is my worst enemy. It his me harder than anything else. Typically with nose bleeds, chest tightness, emotional instability to the extreme, unable to breath deeply enough, widespread pain, a major sense of fear and dread washes over me...
- ALL of my symptoms get MUCH worse during PMS and my period. My periods are very very heavy and painful. Very difficult to manage.
- I can't have a slightly confrontational talk with someone without shivering and sweating, and it feels like helium fills up my head. I avoid confrontation in person. If I has to be done I prefer to say most of it through text (email or whatever) and then finish talking about it in person when the shock is over.
Here's some video evidence of my heart rate issues. I uploaded my video to youtube and would rather link to it than embed it since blogger gives me too many issues with embedding videos:
https://www.youtube.com/watch?v=L5uUA-Qydps
...I'm sure I'm forgetting some important symptoms, but this should give you a pretty good idea of what it's like to be me. My supplements help most of these symptoms to be mild and manageable as long as I don't over tax myself, but I'm also paying about $600/ month for them. They're working much better than anything else I've tried, but I've stopped improving and they're just maintaining me.
I need to have an MD determine if I have POTS or something else, because I need to be able to either accept that I can't improve more than this or that I can try something else to improve. I can't plan my life out around the not knowing if I can improve or not. And unfortunately, only an MD has the credentials to make that determination. No employer or assistance programs will accept anything other than the right type of MD's diagnosis. I'm not going because my Naturopathic doctor isn't helping (he's been the most helpful person I've ever worked with), I'm going because I need to go the conventional accepted route to get what I need to manage life.
And it's oh so stressful.
I just can't find the energy to reply to people I really care about on Facebook messenger. I'm too brain dead. I rarely watch TV on my own because I'd rather be doing something, and so video games help me relax while being interactive, but lately I've found myself watching more and more because it allows me to just lay on the couch and zone out. My games are calling to me to be played, but I know I can't think well enough to enjoy them. So please understand that I'm not ignoring anyone - I'm just trying to make it day by day, waiting for a time when I feel up to replying to messages or writing a blog post. I'm not even up to blogging right now, but people are asking about me, so I wanted to explain.
I'm tapering off all my pills again for some doctor appointments next month. I'm going to see a Cardiologist for a Tilt Table test to officially test for POTS and an Echocardiogram to monitor my Pulmonary Stenosis (heart murmur I was born with that never "went away.") Then I'm seeing a Neurologist for POTS and Chronic Fatigue, and he's going to run a nerve conduction test. Then I'm going to see my Naturopathic doctor (Dr. Bier at HumanNatureNaturalHealth.com) for an exam and treatments. I have to be at my worst for the Tilt Table test, which means I need to taper off my pills that help me manage my day-to-day life. It also means I need to stop seeing the Chiropractor since adjustments do help my symptoms subside for a little while.
Needless to say, this is leaving me exhausted: the stress of planning the trip to New Hampshire to see these doctors alone is too much stress. Finding an AirBNB that is fragrance-free, finding plane tickets, figuring out how to pack light for a trip in the winter... my parents have done most of the work and it's still too much stress for me. Oh, and how could I forget how difficult and time consuming it was to get the appointments scheduled? I felt bad for how much work I put my doctor through to get me these appointments. Now I have to call Disability to move my hearing, which is going to be a giant headache... and I honestly haven't had it in me to make the phone call yet. My appointments only worked out on the day that my hearing is scheduled for. I'm planning on making that phone call after my tea kicks in. Or why couldn't I just do it over Skype? My hearing is set to be a teleconference over a TV anyway...
In the midst of all this, the motor and pump on our dishwasher broke, and it was out of commission for almost 2 weeks. Thankfully the warranty covered the repair!
I'm also trying to manage at work through all of this - my goal has been to not lose any shifts. This is challenging. As long as my matcha powder in my water keeps giving me the strength to work, I can work. When the caffeine isn't enough, I can't do it. And I'm getting more and more vertigo without taking my b12. I took one b12 the other day because the vertigo was too strong for me to be able to drive myself to work. The b12 killed the vertigo - it worked. But I'm not supposed to be taking it. So I'm getting really nervous about working, but I can't afford not to. I have to save ALL of my strength and energy for work, which means chores at home are not getting done. My mom was really helpful and very nice and came to stay with us twice so she could do chores for me. My husband works so much that he shouldn't have to do any, and I don't want him to lose his health from overworking.
I'm really struggling - if only I stopped having things I had to do. If work was my only obligation I could make it. But things I have to do keep coming on, one thing after the other. Why can't I just rest? Why is everything full of phone calls and paperwork? Every day I have to accomplish SOMETHING... it's always SOMETHING. I'm not well enough to do all of this. I wish I had a disability lawyer hired to handle it all for me... but the work of getting a lawyer is way too overwhelming. Even if I get diagnosed, I don't think I'll win disability. North Dakota doesn't like to give it to people under age 50 because, and I quote, "Young people are resilient." You have no idea how angry this makes me. When I finally figure out how to recover and improve my health I'm going to fight this notion in our local government and strive to educate our judges. If I was resilient then I wouldn't have a health problem worth asking for disability over now would I? I'm asking for disability BECAUSE I'm not NOT resilient enough. And that's not my fault. I didn't choose to be this sick.
I'm honestly tempted to drop my case entirely, move to another state, and try again there. North Dakota is a difficult place to live if you have medical needs, and not just because of the rough extreme weather. The weather alone makes it difficult, and healthy people just don't understand that. When you're very sensitive to pressure changes, temperature changes, and extreme temperatures, but you also have to deal with shoveling and driving in sometimes large amounts of snow and ice... it's difficult. You have to be a resilient and rugged person to live here. I used to be. But it takes energy to be, energy I no longer have. I get so much crap from people here when I get upset over several inches or more of snow - they say things like, "Suck it up, Buttercup!" or "You'll get used to it." or "The rest of us deal with it, so you can too." There was a time when I was used to it and could handle it, but dealing with it takes energy. They all have the energy, and they don't know what it's like to not have the energy. It's very insulting to me to hear things like this because I used to take pride in being able to handle the rough situations. I used to not get anxiety over a little extra hardship. They didn't know me back then, when I was healthy and could take on the world. Back when a challenge was just an opportunity to succeed. I can't think that way anymore without getting sicker.
I've been getting asked what my symptoms are that have led me to getting these tests done. Here's a non-comprehensive list:
- Dizzy and short of breath when standing up. I'll see colors spinning all around me for several seconds before things come back into focus.
- Heart pounds so hard that it makes my teeth chatter with each beat. Sometimes it feels like my heart will pop out of my neck.
- Heart palpitations, especially when laying down.
- When I measure my heart rate from laying or sitting to standing up, it often (but not always) goes up 40 or more beats per minute. Sometimes it doesn't change at all, despite feeling very weak. It also jumps all over the place when I'm laying still - it's jumped around 30 bpm when I was laying perfectly still except for breathing. It would go up and down and up and down within 30 bpm.
- Normal blood pressure is typically about 100/60, but have been down to 90/50 frequently enough. Licorice does raise it back up temporarily. After exercising my systolic tends to rise a lot, but diastolic doesn't change much.
- Sharp shooting pains in my chest. Sometimes my whole chest will feel sore like I worked out the muscles too hard.
- Vertigo that comes and goes.
- Blurred vision or very tired vision, making it so that I end up squinting when trying to keep eye contact with someone
- Constant neck and shoulder tension, sometimes so tense that it gives me an earache or toothache. I get regular muscle work done and it's not enough.
- Headache at the top of my neck that comes and goes.
- Tinnitus in my ears that frequently changes in terms of severity
- Periods of derelization and depersonalization, where reality feels like a dream that I'm not actively involved in. Like I'm viewing reality on a TV and I'm not actually in it, but have to act like I am in it... because I am.
- Adrenaline rushes and crashes. I can shake and run around like a crazy person during the adrenaline rushes, and when I crash I crash so hard that I quite honestly can't get up. I often wake up with these adrenaline rushes in the middle of the night. Very similar to anxiety attacks, but it's not anxiety.
- Legs and arms can suddenly feel like jello. They can lose strength and feel wobbly.
- Never ending bloating issues, with sharp stabbing gut pains.
- Icy cold arms and legs while my torso is sweating as though it's in a sauna.
- Sweating when I feel cold, or being freezing cold when others are comfortable in t-shirts.
- Inability to determine if temperature is safe, like when I'm doing the dishes or taking a bath I can pour water that's way too hot and not realize I'm burning until my heart rate skyrockets, my skin is bright red, and I'm sweating like crazy. Other times the water will feel way too hot and I'll sweat like crazy when it's actually colder than I normally like it.
- Pale flushed skin, sometimes associated with my skin being very tender to touch, the way skin feels when you have the flu.
- I never feel hydrated, even when I drink so much electrolyte water that my stomach wants to vomit from being over filled with water. I'm always feeling dry. Sometimes I have a problem of needing to go to the bathroom every 5 minutes, other times I'm wondering why I can't go to the bathroom more often when I feel like I'm flooding myself.
- Energy so low that it can be exhausting to just grill a steak for myself.
- Energy so low that it's difficult to hold a conversation with someone because I can't focus on listening or forming replies.
- Slurring my speech and/ or stuttering.
- Joint pain that comes and goes
- Falling asleep is really very extremely difficult, even when I'm exhausted.
- Sleep is not restful. I either wake up feeling high adrenaline that gets me moving quickly, and I crash very hard once I eat breakfast, or I take until 11 or noon to get out of bed because I'm feeling so incredibly tired.
- My tongue sometimes swells up so much it doesn't fit in my teeth.
- I can't sit with my feet on the floor without getting overly tired and weak, so I sit on chairs with them curled up towards my chest.
- I can't lay still long without getting fidgety, my body needing to move.
- I can't just sit and talk to someone over tea. I HAVE to be doing something, even if it's just playing with something in my hands, but if you want to talk to me I should be doing the dishes or cleaning something while we're talking. If I'm not moving, I crash hard and can't focus. But if I move too much I get exhausted and need to go lay down where it's quiet. So in other words, being social is draining. I like the idea of having friends, but not always the reality of spending time with friends.
- Reactive to fragrances and other synthetics, meaning: widespread muscle pain, gut cramping, heart burn, vision loss, emotional instability issues, headaches, sinus aches (I got a sinus infection from going into a very smelly Staples once), heart pounding and palpations, rashes...
- Very reactive to foods, making it so I can't cheat on my diet without paying hard for it. Hives, rashes, adrenaline surge, nervous ticks, severe anger, stomach and gut pain, very high painful heart rate, bowel and bladder control issues, muscle pain...
- Mold is my worst enemy. It his me harder than anything else. Typically with nose bleeds, chest tightness, emotional instability to the extreme, unable to breath deeply enough, widespread pain, a major sense of fear and dread washes over me...
- ALL of my symptoms get MUCH worse during PMS and my period. My periods are very very heavy and painful. Very difficult to manage.
- I can't have a slightly confrontational talk with someone without shivering and sweating, and it feels like helium fills up my head. I avoid confrontation in person. If I has to be done I prefer to say most of it through text (email or whatever) and then finish talking about it in person when the shock is over.
Here's some video evidence of my heart rate issues. I uploaded my video to youtube and would rather link to it than embed it since blogger gives me too many issues with embedding videos:
https://www.youtube.com/watch?v=L5uUA-Qydps
...I'm sure I'm forgetting some important symptoms, but this should give you a pretty good idea of what it's like to be me. My supplements help most of these symptoms to be mild and manageable as long as I don't over tax myself, but I'm also paying about $600/ month for them. They're working much better than anything else I've tried, but I've stopped improving and they're just maintaining me.
I need to have an MD determine if I have POTS or something else, because I need to be able to either accept that I can't improve more than this or that I can try something else to improve. I can't plan my life out around the not knowing if I can improve or not. And unfortunately, only an MD has the credentials to make that determination. No employer or assistance programs will accept anything other than the right type of MD's diagnosis. I'm not going because my Naturopathic doctor isn't helping (he's been the most helpful person I've ever worked with), I'm going because I need to go the conventional accepted route to get what I need to manage life.
And it's oh so stressful.
Thursday, July 20, 2017
Don't Tell Me, "Just Exercise!"
I get pretty upset when people tell me, "Just exercise more! Exercise cures everything!" It shows they have no understanding of my illness. It also shows that they don't notice how much exercise I do get and how proud I am about it. I lift weights at home, use my Pilates ring, go on 1-2 mile walks a couple times a week, and work at a job in which I'm on my feet the whole time. I also do 50-100 jumping jacks at a time when I have adrenaline rushes to burn off, and that's almost daily. To you this might sound like a joke, but to me it's more than I was able to do a couple of years ago and I'm very proud of my progress.
On a day like today I can't simply just get up and exercise to fix my symptoms. My head feels like a hot air balloon, like it might float away. It's making me dizzy, and when I get up the POTS symptoms kick in. I instantly get clammy with sweat, my heart rate skyrockets, my heart palpitates, I see colors spinning all around me and my vision blurs, and my muscles loose strength. It's as though I'm on the verge of fainting, but I don't faint easily. PMS made me faint once, but I'm not PMSing right now. I must let myself sit down or drop to the floor until my heart calms down and my vision returns. Then when I stand back up again I have to do it very slowly, and I might start feeling the symptoms again if I start walking too soon. As long as I'm still I feel okay, but I can't stay still for too long without my blood pressure getting too low and I crash.
I'm not feeling like this every day. I don't feel the POTS symptoms every day. Other days I can just have fatigue so strong that even walking around the house makes the fatigue worse. On days like that I have to do nothing. My body is begging for time to rest and repair, and if I dare try to exert myself it's going to give me the equivalent of the Blue Screen of Death (the worst error message your computer can give you.) On days like this I don't necessary get dizzy with high heart rate when getting up. I just have to force my muscles to move, because they really really don't want to. It's more than just willpower to move my legs, it's necessity. If I don't walk to the kitchen I won't eat. If I don't eat I'll get hypoglycemic again. If I get hypoglycemic I might be so far gone that I'll go into a coma. Of course I get terribly anxiety on these days, so I can't just lay in bed resting. I have to somehow shut off my brain with homeopathic pellets and pills. They can leave my brain too numb to enjoy anything, but not let me just fall asleep.
Some days I think I'm having a good enough day and I do go out for that long walk, only to come home and measure my blood sugar in the 60's or so. I get symptomatic when my blood sugar falls below 85 - and before you argue that's a healthy number, you need to understand that my body can't handle being below 85 even if your body feels best at that number. When I'm at about 85 I start to feel the tremors and shakes, the low dull headache, the mild tunnel vision, and the deep cold start to settle into my body. We all have different bodies with different needs.
I'm not getting low blood sugar quite as easily these days, but my diet is so careful and I still take my chromium with pancreas glandular. I'm also having fewer days with the severe chronic fatigue that forces me to do nothing all day. I'm recovering faster from over excretion, and I'm finding that I have more days where going for that long walk doesn't make me crash. I never come home from that long walk feeling better than before I went, it does take a lot of energy for me, but I'm finding I crash less often after my walks. That said, what if I over exercise to try to improve my health and end up going backwards by overspending myself? I don't want to lose any progress I've made with my health. I need to be careful with how I spend my energy.
...But I am having more and more days when I go to work not feeling rested enough to handle the shift without some sort of boost. I used to only add matcha to my water bottle on days when I really needed the caffeine, but it's turned into needing that matcha every shift, 4 days a week. I haven't had a shift in a few months in which I've felt able to work without the caffeine. So I can feel myself sliding backwards from over extending myself. Ideally, I'd take a few weeks off of work to let my body fully rest, but financially I cannot afford to do that. It also wouldn't be fair to my co-workers. And that job is physical. It is exercise for me. Being on my feet for 4 hours, walking around the store all day, lifting heavy boxes, going up and down from bottom shelf to top shelf... I feel my best in jobs like this. My blood needs to keep moving to feel well. I'd do so much worse at a desk job. But it's very draining. I do so little at home because I save up all my energy and strength for being at work.
I'm getting so sick of hearing, "Just exercise!" If you're able to say that to me, you clearly have never experienced this level of fatigue. Don't argue with me. Arguing makes me angry and drains me way too quickly. Anger doesn't settle down for hours in my body. My body can't processes strong emotions well. My adrenals can't keep up with the energy strong emotions take. All I'm asking is that if you want to give me a suggestion then please don't give it to me as a demand. Don't tell me what to do. Respect my needs. I'm very open to suggestions when they're given to me in a gentle non-judgmental manor after I've been listened to. But don't come on strong barking orders at me when you haven't listened to what I'm going through. I'm likely to shut you out of my life and ignore you as a defense.
On a day like today I can't simply just get up and exercise to fix my symptoms. My head feels like a hot air balloon, like it might float away. It's making me dizzy, and when I get up the POTS symptoms kick in. I instantly get clammy with sweat, my heart rate skyrockets, my heart palpitates, I see colors spinning all around me and my vision blurs, and my muscles loose strength. It's as though I'm on the verge of fainting, but I don't faint easily. PMS made me faint once, but I'm not PMSing right now. I must let myself sit down or drop to the floor until my heart calms down and my vision returns. Then when I stand back up again I have to do it very slowly, and I might start feeling the symptoms again if I start walking too soon. As long as I'm still I feel okay, but I can't stay still for too long without my blood pressure getting too low and I crash.
I'm not feeling like this every day. I don't feel the POTS symptoms every day. Other days I can just have fatigue so strong that even walking around the house makes the fatigue worse. On days like that I have to do nothing. My body is begging for time to rest and repair, and if I dare try to exert myself it's going to give me the equivalent of the Blue Screen of Death (the worst error message your computer can give you.) On days like this I don't necessary get dizzy with high heart rate when getting up. I just have to force my muscles to move, because they really really don't want to. It's more than just willpower to move my legs, it's necessity. If I don't walk to the kitchen I won't eat. If I don't eat I'll get hypoglycemic again. If I get hypoglycemic I might be so far gone that I'll go into a coma. Of course I get terribly anxiety on these days, so I can't just lay in bed resting. I have to somehow shut off my brain with homeopathic pellets and pills. They can leave my brain too numb to enjoy anything, but not let me just fall asleep.
Some days I think I'm having a good enough day and I do go out for that long walk, only to come home and measure my blood sugar in the 60's or so. I get symptomatic when my blood sugar falls below 85 - and before you argue that's a healthy number, you need to understand that my body can't handle being below 85 even if your body feels best at that number. When I'm at about 85 I start to feel the tremors and shakes, the low dull headache, the mild tunnel vision, and the deep cold start to settle into my body. We all have different bodies with different needs.
I'm not getting low blood sugar quite as easily these days, but my diet is so careful and I still take my chromium with pancreas glandular. I'm also having fewer days with the severe chronic fatigue that forces me to do nothing all day. I'm recovering faster from over excretion, and I'm finding that I have more days where going for that long walk doesn't make me crash. I never come home from that long walk feeling better than before I went, it does take a lot of energy for me, but I'm finding I crash less often after my walks. That said, what if I over exercise to try to improve my health and end up going backwards by overspending myself? I don't want to lose any progress I've made with my health. I need to be careful with how I spend my energy.
...But I am having more and more days when I go to work not feeling rested enough to handle the shift without some sort of boost. I used to only add matcha to my water bottle on days when I really needed the caffeine, but it's turned into needing that matcha every shift, 4 days a week. I haven't had a shift in a few months in which I've felt able to work without the caffeine. So I can feel myself sliding backwards from over extending myself. Ideally, I'd take a few weeks off of work to let my body fully rest, but financially I cannot afford to do that. It also wouldn't be fair to my co-workers. And that job is physical. It is exercise for me. Being on my feet for 4 hours, walking around the store all day, lifting heavy boxes, going up and down from bottom shelf to top shelf... I feel my best in jobs like this. My blood needs to keep moving to feel well. I'd do so much worse at a desk job. But it's very draining. I do so little at home because I save up all my energy and strength for being at work.
I'm getting so sick of hearing, "Just exercise!" If you're able to say that to me, you clearly have never experienced this level of fatigue. Don't argue with me. Arguing makes me angry and drains me way too quickly. Anger doesn't settle down for hours in my body. My body can't processes strong emotions well. My adrenals can't keep up with the energy strong emotions take. All I'm asking is that if you want to give me a suggestion then please don't give it to me as a demand. Don't tell me what to do. Respect my needs. I'm very open to suggestions when they're given to me in a gentle non-judgmental manor after I've been listened to. But don't come on strong barking orders at me when you haven't listened to what I'm going through. I'm likely to shut you out of my life and ignore you as a defense.
Sunday, July 9, 2017
Blood Pressure During Reactions
I get blood pressure problems in waves. I go a few weeks where it's good enough, then I go for a few weeks when it's problematic. Often it's just too low. 90/55 with a resting heart rate of 85 is pretty common for me. I always have a high heart rate. I have not seen it below 72 in the 2 years I've owned my blood pressure machine.
But a problem I'm seeing after exposure, in which I'm reacting, is that my systolic goes up while my diastolic goes down. Today I was downstairs, where a family member lives (so I don't spend much time there), helping my husband do some house repair. I spent some time vacuuming cobwebs and dust too. Fatigue and weakness increased quickly, but it took an hour or so before I got histamine issues. I used my neti pot and black gunk came out of my nose. I couldn't stop coughing for a while. Then came the vertigo and gut pain in the evening. I was so fatigued I couldn't follow what was happening in the TV show we were watching. I took my blood pressure at that point. Earlier in the day it was 93/58 then 98/60 (I took solid licorice extract). This last reading was 108/53. I see this happening whenever I'm reacting. Systolic goes up, diastolic goes down.
Apparently when this happens the body find a way to compensate. It restricts blood vessels and focuses blood on the brain. Apparently people can go years without being aware of blood pressure problems that are causing heart strain because of the body's ways of compensating. But what happens when those compensations fail? Heart failure. The heart can't keep up anymore. What happens when a person like me doesn't have a body that restricts blood flow by narrowing blood vessels? I get super fatigued and dizzy and have to lay down for however long it takes to improve.
In all my research I can't find anything that will raise blood pressure at nighttime without raising cortisol too. Licorice raises cortisol. My nighttime cortisol is high, making it hard to sleep.
So tonight I'm laying here feeling a bit naceous and wondering what the gut cramping is trying to tell me, also feeling too fatigued to sleep. Fatigue and tiredness are not the same thing. I wish I felt more tired.
Tomorrow is another day, a day when my doctor will be in his clinic and I can talk to him.
Thursday, June 15, 2017
Current Favorite Products
I've been updating this post as I think of things to add to it, and I may continue to update it. These are my current favorite products!
Lauren Brooke Cosmetiques
The whole entire brand. I've written about natural and organic make up before, including Lauren Brooke lip colors (I never finished that post because... fatigue and sickness making me not look camera ready), Mineral Fusion, and MyChelle. MyChelle no longer makes make up. I don't understand why, because they had this awesome foundation cream stick that I loved, but the company decided to focus on skin care instead of cosmetics. Such a disappointment. I switched to Mineral Fusion pressed powder foundation. I like it a lot, but I find it's a bit dry and I broke out to their liquid foundation. I learned that Mineral Fusion is not 100% trustworthy and only some of their products are safe, but the safe products are excellent and I highly recommend. I decided to finally try Lauren Brooke's pressed powder. I'm never going back. It's the bomb! It's not drying, applies really smoothly and evenly, and has this radiance to it that Mineral Fusion didn't give me. I don't feel it on my skin. It looks so natural and feels so natural, but covers the perfect amount and warms up my skin tone nicely. It also neutralizes my undereye bags without concealer! It doesn't hide them like concealer, but it masks the purple color so it looks like I'm not wearing make up or trying to hide them.
I just purchased two new items from them (as in minutes ago, have not arrived yet.) One is their lash conditioner. They sent me a sample of it last time I ordered. I never really thought I wanted a lash conditioner until I tried it, but the sample of it convinced me. It helped tone down my itching and my lashes did act stronger - as in, not falling out at the normal rate. What I would actually like from regular use of it is to regrow lashes. I have a "bald patch" in my lashes that drives me nuts. This conditioner has horsetail in it, and from my understanding, horsetail is the only herb known to create new hair growth (as opposed to helping the hair you already have grow more.)
The other new item I just bought is their creme concealer. I have an issue with eye shadows creasing on me - all brands, doesn't seem to matter if it's powder or liquid. Reviewers said this concealer mixes really well with eye shadow and prevents the creasing. I'm going to test this out and see if it's true! As it is, I tend to wear very light amounts of eye shadow so that when it ends up creasing it's not as obvious. I want to be able to rock a normal layer of eye shadow for hours!
I'm wearing Lauren Brooke Cool 20 Pressed Powder Foundation in this photo (along with Honeybee Garden eye liner, and Mineral Fusion mascara and blush.) I took this on a day when I was feeling badly and tried to get ready for work, so I did my make up, but wasn't strong enough to actually work. I never expected to use the photo, lol, but you can see how it makes my skin look natural with a glow. My chest skin was more pale than normal. I love it!
Biokleen Laundry Powder and Oxygen Bleach Plus
This has been a miracle worker for me! I use the Premium Plus one because it doesn't have corn products in it like the Fragrance Free one does (I'm allergic to corn.) I can use the Fragrance Free liquid from them, but I prefer this powder. It has Zeolite and hydrogen peroxide in it, both of which are excellent ingredients for KILLING perfumes and other fragrances. I might have to wash 2-3 times to get rid of badly contaminated clothing, but the majority of the time one wash is enough to completely remove any trace amounts of fragrances that stick to my clothes. It's awesome!!! It also cleans really well and keeps whites very white. This is the lowest effort most effective laundry product I've ever used.
The oxygen bleach is on the same page I link to. It's like Oxyclean, only with trustworthy ingredients. I use this in toilet tanks and to soak my bath tub with. The toilets have less grime and my tub that is stained a bit brown from using Redmond's Bath Salt Plus turned white. With no scrubbing. :D
This handmade turtle from a Fair Trade store in Minneapolis
...that was on clearance for $4 and I finally found a small succulent for.
Sierra Trading Post
Their website. It's part of the TJMaxx chain of stores, but is for outdoor and recreation enthusiasts. They sell a good variety of organic clothing and eco products. It may not be GOTS certified sweatshop free organic clothing, which is my preference, but I only work 12-16 hours a week. I can't afford my standard unless it's on clearance. I have a small variety of GOTS certified sweat shop clothing in my closet, but it was all purchased on good sales. When I need some article of clothing and I can't find what I need on sale elsewhere, going simply for organic cotton from Sierra Trading Post is amazingly helpful. It's all liquidation, so their selection is constantly changing, but their prices are fantastic. I've bought both organic clothing (brands like Prana, Patagonia, United By Blue, and Adventura) and natural leather with rubber shoes from them at huge savings. I can't rely on them to have what I need, but I've scored great deals from them. And it's excellent for men too! The focus on organic clothing is on women, but they actually have a good variety for men!
The only problem? Their return policy. You'll have to pay to return, which can make returns not worth it on some items. But their prices and discounts make up for it. Just make friends who will buy items that don't fit you.
Choice Mental Focus Tea and Choice Vanilla Roobios Tea
I drink a ton of tea. I can only drink water and tea, no juices or coffee or sodas. I'm limited in which teas I can drink due to medicinal properties of some teas and herbs, but thankfully both of these work for me. I use caffeine sparingly and I plan out when to drink it. I'm sensitive to it, so I have to be careful. Both of these are caffeine free, but work great in the day time! The Mental Focus tea is awesome when I'm wanting to lift brain fog without using caffeine. It really does help! The Vanilla Roobios tea just has this silky smooth dark flavor, and I love dark green and black tea. It's my caffeine-free dark flavor replacement. Sooooooo good!
GoWise USA Blood Pressure Monitor
I have blood pressure issues. I haven't written much about it yet, but I appear to have POTS (doctor tested). POTS is a heart rate issue, but in my case it's a blood pressure issue too. I'll get into this someday when I'm ready to write about the things stressing me out again, lol. Anyway, I bought this last year to monitor myself so I could learn when I was fighting low blood pressure instead of having another issue, like hypoglycemia. It has been really insightful. This monitor uses an arm cuff, which is much more accurate than the write monitors. It's not perfect because it's a machine, which uses averages to calculate. My doctor measures my blood pressure manually and spends a lot more time measuring it to be accurate and see how it fluctuates. This machine won't show fluctuations. But for an at home tool it actually is accurate enough to be helpful. I didn't get excited about it last year because it didn't ever seem to be accurate, but it was my fault. I was measuring incorrectly. I fixed my posture and arm position, which made all the difference in the world!
It does measure heart rate too. I think a normal person could trust the heart rate reading on it, but it doesn't read long enough for someone like me. My heart rate jumps all over the place within seconds. I think it give me an average, like Fitbit does (I'll get into why Fitbit is the wrong tool for people with POTS later.) But what it does tell me is when my resting heart rate is simply too high. Mine is often in the 80's, sometimes in the 90's. That's really not good.
This Shark Vacuum
Vacuuming has always been an issue for me. I get allergy issues if I don't vacuum, but I get allergy issues if I do. It's because the vacuum we had before just kicked up dust and only collected part of it. My husband came to me and said he wanted to get me a better vacuum, but didn't want to get it for me for a holiday or birthday because he didn't want to imply that I'm just an objectified house maid. lol! So he got it for us "for Memorial Day." Ha! He was teasing, because I'm not sensitive about such things, but I enjoyed the laugh.
Anyway, this vacuum sucks! It actually sucks hard without kicking dust up into the air! It has 2 more amps (power) than the last vacuum, and it has a HEPA filter built in to prevent any dust from leaving through the exhaust. It's not only collecting a lot more from our carpet, it's allowing me to vacuum as much as I want without even needing to wear my face mask! All the other features are wonderful on it too, but the fact alone that the suction is powerful and it has a HEPA filter is enough to make me fall in love with it. If you need an allergy friendly vacuum, I highly recommend this one!
This was after a quick vacuum around the upstairs to try out the new vacuum. I had just vacuumed the week prior with the old vacuum. Clearly the old vacuum wasn't picking up very much...
Om Pure Air mask
I've been using Vog Mask, but suddenly I couldn't find their organic cotton version anywhere for sale. My old 2 from them are too worn out and they're not refreshing in the sun. It's hard to breathe through them. So I was forced to find an alternative to buy. I bought this mask, and despite it taking 4 weeks to ship to me, I actually like it better than Vog Mask. It's easier to breathe through it, it fits my face better and seals better, and it's more effective. I think they have a better carbon filter than Vog Mask uses. I'll want to write a full review on this later, so stay tuned for that.
Hemp Organic Life Etsy store
This shop is awesome. All the products are made from organic hemp and linen, and they are high quality. I bought an organic hemp sleeping bag from her to use when I need to travel and sleep in beds that aren't my safe organic latex bed. I bought it as a barrier between me and the bed so I wouldn't have skin contact, at the very least, with the flame retardants, polyester, and other synthetics. I'll review this sleeping bag after traveling with it later this summer, so stay tuned for that, but snuggling with it at home is wonderful! It breathes so well, but also traps in enough body heat to keep me comfortable. The fabric is strong. It's mildly scratchy the same way wool is, but it's softening up with washing. I actually really like that slightly rough texture, I think it feels good on my skin. Anyway, she did a fantastic job with this sleeping bag. She's from the Ukraine, so shipping almost made me cry, but it was so incredibly worth it! You can see how comfortable it is:
She also sent me a free gift of these linen socks, which are so perfect. They're very breathable, but keep me warm. They feel cozy on my skin. These are the best free gift I've received with an order!
Redmond's new Tooth Powder in Black Licorice
So... normally I'm an advocate of making your own toothpaste from scratch in order to save money and save plastic. It's really easy to make with bentonite clay and charcoal. But in this case, Redmond made theirs better than the DIY version. How, you ask? By making it very powdery. It's so much finer than any toothpowder I've made from scratch, and therefore it feels so much softer on the teeth. It brushes better and is much easier to rinse out of my mouth. But the best part? The black licorice flavor. It's awesome. It's so good. I accidently bought the peppermint version and I don't care for the flavor of it.
Also, for those of you who really don't want to do DIY, this is a great option, even though it's in plastic, because the tooth powder lasts about 3x longer than their Earthpaste in the tubes.
Avocado Oil Spray
I'm not sure I have to justify why this is a favorite thing of mine. It's a super healthy fat in spray form without aerosol. I just spray it on salads and it's perfectly evenly distributed on the leafs. I spray it on chicken before it goes on the grill and it means I don't have to massage the chicken with oily hands to get a nice thin coating of oil on it.
Badger Face Oil Set:
Organic oils in a glass pump bottle - they're perfect! I don't react to any of the sets except the Argan oil one, which has orange essential oil in it. I don't do well with citrus oils. They're so gentle, take off make up way better than just coconut oil, and moisturize very well. I wear the face oil under my make up and it doesn't leave me greasy whatsoever. I can't say enough good about this set! My skin looks much more supple with regular use.
Vitamin C and Glutathione IVs (and my Mom.)
Dr. Bronner's Baby Mild Soap
This soap is fragrance free, doesn't dry out my skin, is organic and doesn't irritate my skin, and is very travel friendly. I accidently left my container of it in the bathroom where my Chiropractor and Acupuncturist are. As you can see that building stocks heavily scented soaps - it's hard for me to use their bathroom and I need to slip on my mask to go in there (it's a shared building and they don't choose the soap.) My container was mostly full when I left it there, and exactly a week later it was only a quarter full. People were choosing my fragrance free soap over the fake scented cancer causing soap! That gave me a lot of hope for humanity, lol.
I buy the large 32 oz container of it and keep refilling this little one. I keep this small container in my purse so that I have safe soap with me in public.
Wokamon App
I got myself the cheap Fitbit Flex 2 because AT&T was having a special on them. I wish I had researched fitness trackers before impulsively getting it. At the time I didn't think I wanted to spend more for a heart rate monitor, and I was wasn't wrong to think that since Fitbit's heart rate monitoring isn't detailed enough for people with POTS, but some monitoring would be nice. It also doesn't have a GPS, so I can't map my walks with it. I was mostly interested in the sleep tracking feature, but as it turns out, it's not accurate. I think it's sleeping when I'm laying in bed with my eyes open wondering when I'll ever finally drift off to sleep.
But it's not all a disappointment! I know I can't challenge myself to do more exercise with it in my condition, but it's actually been helpful to see how much walking I do on a normal work day vs normal non-work day. I can see how active I really am when I tell my doctor how much exercise I think I'm getting.
The best part? Wokamon and Achievemint, two apps that are weirdly motivating.
Wokamon is the modern day smart phone Tomagachi, lol! You must take care of your monsters by leveling them up with steps from your fitness tracker. When it tells me I only need 156 more steps to level up, I actually want to get up and get those steps in, even when I'm feeling lazy and tired. I am too motivated by reward systems in video games. :) But hey, it's fun and it's working! I might only average 3,000 steps a day (so I can't compete), but my monsters are leveling up!
Achievemint pays you for using a fitness tracker. You can earn up to $10 a month for all the activity you do with your fitness tracker. It's going to end up being more like $10 every 6 months at the rate I earn points, but hey, I'll take the $10 when I finally earn it!
30% Grain White Vinegar
This stuff works amazingly for killing weeds. It burns weeds, but leaves the roots. After the weed shrivels up you'll have to spray again to burn the roots. The fact of the matter is that it's non-toxic and highly effective! That said, it does burn the skin. Cover your skin when applying!
It IS made from corn, but it's non-GMO corn. The company doesn't verify if the corn was sprayed with Round Up or not, but they do claim the corn is non-GMO and Round Up is mainly used on GMOs. It's also just the acid from the corn, so it doesn't seem to cause me allergic issues (I'm allergic to corn.) I'm not consuming it, just spraying it on weeds.
These reusable organic cotton produce bags
I've been using these for years now, but they're still one of my favorite things. They are fantastic for buying fresh produce with because they weigh nothing, they're breathable, and they keep produce fresh and clean. They wash very easily.
But I discovered a new use for them! They're perfect for washing bras in and other delicates in! Instead of a nylon mesh bag designed for bras, I just stick my bra in one of these, tie the top loosely, and throw it in the washer and dryer. My bras are coming out cleaner than when I used the nylon mesh bag, and I'm guessing the cotton allows more soap through. These bags make my life so much easier!
Alaffia Bubble Bath
This bubble bath is by far the best Alaffia product. It bubbles really well, the bubbles last a long time, it's effective soap, and it's great for washing hair with! I like to mix Starwick Botanical's Kelp powder, baking soda (to neutralize chlorine), and this bubble bath together. I'll wash my hair in the bathwater and soak in it for a while. Then I'll even shave my legs in the bathwater. The bubble bath stays soapy enough to keep my legs lubricated enough to shave with. I rinse in the shower after, of course. I don't particularly care for this brand's shampoo or conditioner (I loved them at first, then it started leaving residue in my hair that wouldn't wash out), but this bubble bath couldn't be better!
Mantra Sports Pilates Ring
I had to let this off gas for a while before I could use it - it's not safe right out of the box for MCS people like myself. But after it stopped being smelly I was able to play with it. The reason I like it is because it allows me to use my muscles even when I'm stuck in bed on my back. I just put it between my legs and squeeze. I put it between my ankles and lift it with my legs. I hold it in my hands and squeeze it and pull it apart. The simple resistance it offers helps me a lot when my muscles feel restless but I'm not feeling strong enough to stand up and walk around. There are probably other great similar products, but this is the one I chose and I really like it!
My acupressure mat - I still love this thing so much!!
....And more. I'm forgetting plenty of things I want to share with you, I'm sure of it, but I've been working on this post slowly all day. I'm done. :) I've leaving out obvious things I've already reviewed, such as my new organic latex bed, which I can't say enough good about! Seriously, your bed matters. A lot.
Saturday, February 4, 2017
Results of New Supplements and Going Off All Supplements
I've had a rough month. Winter is never easy for me, but I chose to do some experimenting despite winter. I want to record some of what I've learned here.
1. Lithium Orotate
My doctor suggested I try this based on my gene data (23andMe.com). Lithium Carbonate has been traditionally used to treat bipolar disorder, but I've been taking Lithium Orotate. The difference is that carbonate isn't stable and a person has to take over 1,000 mg of it at a time to absorb enough to make a difference. Orotate, on the other hand, is highly absorbable and can be taken in small doses. I'm taking 5 mg a day.
For the first couple of weeks it made me feel a bit high - giddy, could laugh really easily, smiled for no reason at all, and had pleasant dreams. That effect wore off and I went back to "normal," except that I've noticed I haven't had nearly as many dark, depressing, lethargic, and apathetic thoughts. I originally started on inositol powder to help with my mood and energy. It did make a mild positive difference, but the lithium has done more.
I have also had regular large, deep, painful cystic acne since starting the lithium. I thought it was from taking the liver glandular, thinking it was detoxing me through my skin, but the problem has continued. I then learned from someone else that lithium gave them the same kind of acne. I'm now trying to decide if the better mood from lithium is worth this painful large acne.
2. Selenium
My doctor also suggested I try selenium for the same reason as trying lithium. Low selenium contributes to thyroid disorders, and my thyroid is disordered. I started and stopped the selenium twice. The first time I tried it turned me into a total zombie: very lightheaded and weak, dizzy, and unable to focus. I developed these symptoms immediately. A few weeks later I tried it again. It took 2 weeks before I developed the same symptoms. It gave me vertigo so strong that at times I couldn't walk in a straight line. So I stopped taking it. I didn't notice any other effect or benefit.
They say that the soil here in North Dakota is rich in selenium. I eat mostly locally grown organic foods, so I'm hoping this simply means that I'm getting enough regularly through my diet.
3. 4-point Saliva Cortisol Test/ Going off all supplements for 2 1/2 days.
I am very likely going to write a post on the results and preparation process when I get them. This is about the results of quitting all supplements for 2 1/2 days in order to do the test. I joined an adrenal fatigue support group on facebook based on the book Stop The Thyroid Madness. They say that it's very important to be off all supplements for 2 full weeks before doing the cortisol test, because you have to get all adaptions and other things that affect cortisol levels totally out of your body to see how your body does without support. I couldn't handle being off my supplements for 2 1/2 days, so I went ahead and did the test. I understand that some people think this will ruin the test results, but I honestly do not think it is safe for me to be off supplements any longer.
What happened?
- My blood sugar plummeted. With supplements it stays between 95-115 most of the time. Off supplements (I measured about once an hour for 2 days) I was staying between 72-98, most of the time I was in the 80's. I start to get symptomatic of hypoglycemia when I'm below 90, but below 80 I can't function. I was hypoglycemic a lot in the last 2 1/2 days. I did not change my diet of eating protein every 2 hours. (Keeping in mind that the adrenal glands do heavily affect blood sugar, and I stopped supporting my adrenals.) This morning (now that I can go back on my supplements) I did a test. My blood sugar was 84 when I got up, then after a protein shake including licorice (which affects the adrenals) it shot up to 124!!! That's a huge difference very quickly! I'm looking forward to going back on my pancreas glandular with chromium, which really helps keep my blood sugar stable.
- Heavy menstrual bleeding just 2 weeks into my cycle. My diva cup was full, and it was very dark and clotted.
- Blood pressure got wonky. I didn't see it ever dip below 95/58, which isn't much lower than I occasionally get even when on my supplements, but my pulse pressure narrowed by about 10 points on average. Pulse pressure is the distance between systolic and diastolic, and a healthy pulse pressure is about 40. My pulse pressure was often 25-30, but I had one reading of it at 55. This isn't stable for me. I'm generally around 30-40 when on supplements, even if my overall blood pressure is on the low end.
- Disturbed sleep. I couldn't take any sleeping aids for 2 nights, which was torture. Both nights it took hours of just laying there to fall asleep, even though I was exhausted from work. Once I got to sleep I found myself waking up every couple of hours. Small sounds in the house would also wake me up. I wouldn't feel rested during the day. Last night, after finishing the coritosl test, I took my sleep pills. They normally take about hour to kick in, but they made my whole body tingle and shut down within about 10 minutes. I felt like I was fighting sleep, but after shutting the light off and trying to sleep I couldn't fall asleep for probably an hour. Once I did fall asleep I stayed asleep, thankfully.
- Couldn't find joy in doing anything, even things I liked. The first day wasn't so bad, but the second day (yesterday) was awful. Everything felt like work, most things annoyed me, and nothing was enjoyable to do. I was apathetic, but worse than that, I felt emotionally muted.
- Poor memory. I found it hard to recall information, remember how and when something happened, and found it hard to retain the instructions I was reading over and over. After only 2 1/2 days without supplements! This shows how sensitive my body is.
- Poor vision and balance. A big part of this was being hypoglycemic, but even when my blood sugar was in the 90's I would have sensations of the floor moving below me, me swaying when I was not, and objects in the distance vibrating when they were not.
- Joint aches, but surprisingly no fibromyalgia. I was feeling very inflammed.
- Digestion plugged up. I gained about 5 pounds in bloat in the last 2 days, and my IBS is acting up. I did actually take my digestive enzymes to help, but they didn't help much. I was having regular bowel movements, but staying bloated and food wouldn't move through me well.
- Intense fatigue, but not constantly. I was able to work for the first 1/2 day and the second full day without supplements, but I was dragging and "flight mode" was kicking in a lot when I was encountering minor problems. At times it took willpower to lift my legs to walk. Yesterday I had trouble getting up and moving at times, but had weird spurts of jittery energy in which I was able to run up and downstairs to do laundry.
What did I learn from all this? That my supplements really are doing me good! I was able to write this post because I'm finally able to drink a cup of green tea, which tastes like heaven right now. My adrenal glands still have A LOT of healing to do, even after 3 years of trying to repair them. I don't need the test results to feel this, but I'm very curious about how my results will look.
1. Lithium Orotate
My doctor suggested I try this based on my gene data (23andMe.com). Lithium Carbonate has been traditionally used to treat bipolar disorder, but I've been taking Lithium Orotate. The difference is that carbonate isn't stable and a person has to take over 1,000 mg of it at a time to absorb enough to make a difference. Orotate, on the other hand, is highly absorbable and can be taken in small doses. I'm taking 5 mg a day.
For the first couple of weeks it made me feel a bit high - giddy, could laugh really easily, smiled for no reason at all, and had pleasant dreams. That effect wore off and I went back to "normal," except that I've noticed I haven't had nearly as many dark, depressing, lethargic, and apathetic thoughts. I originally started on inositol powder to help with my mood and energy. It did make a mild positive difference, but the lithium has done more.
I have also had regular large, deep, painful cystic acne since starting the lithium. I thought it was from taking the liver glandular, thinking it was detoxing me through my skin, but the problem has continued. I then learned from someone else that lithium gave them the same kind of acne. I'm now trying to decide if the better mood from lithium is worth this painful large acne.
2. Selenium
My doctor also suggested I try selenium for the same reason as trying lithium. Low selenium contributes to thyroid disorders, and my thyroid is disordered. I started and stopped the selenium twice. The first time I tried it turned me into a total zombie: very lightheaded and weak, dizzy, and unable to focus. I developed these symptoms immediately. A few weeks later I tried it again. It took 2 weeks before I developed the same symptoms. It gave me vertigo so strong that at times I couldn't walk in a straight line. So I stopped taking it. I didn't notice any other effect or benefit.
They say that the soil here in North Dakota is rich in selenium. I eat mostly locally grown organic foods, so I'm hoping this simply means that I'm getting enough regularly through my diet.
3. 4-point Saliva Cortisol Test/ Going off all supplements for 2 1/2 days.
I am very likely going to write a post on the results and preparation process when I get them. This is about the results of quitting all supplements for 2 1/2 days in order to do the test. I joined an adrenal fatigue support group on facebook based on the book Stop The Thyroid Madness. They say that it's very important to be off all supplements for 2 full weeks before doing the cortisol test, because you have to get all adaptions and other things that affect cortisol levels totally out of your body to see how your body does without support. I couldn't handle being off my supplements for 2 1/2 days, so I went ahead and did the test. I understand that some people think this will ruin the test results, but I honestly do not think it is safe for me to be off supplements any longer.
What happened?
- My blood sugar plummeted. With supplements it stays between 95-115 most of the time. Off supplements (I measured about once an hour for 2 days) I was staying between 72-98, most of the time I was in the 80's. I start to get symptomatic of hypoglycemia when I'm below 90, but below 80 I can't function. I was hypoglycemic a lot in the last 2 1/2 days. I did not change my diet of eating protein every 2 hours. (Keeping in mind that the adrenal glands do heavily affect blood sugar, and I stopped supporting my adrenals.) This morning (now that I can go back on my supplements) I did a test. My blood sugar was 84 when I got up, then after a protein shake including licorice (which affects the adrenals) it shot up to 124!!! That's a huge difference very quickly! I'm looking forward to going back on my pancreas glandular with chromium, which really helps keep my blood sugar stable.
- Heavy menstrual bleeding just 2 weeks into my cycle. My diva cup was full, and it was very dark and clotted.
- Blood pressure got wonky. I didn't see it ever dip below 95/58, which isn't much lower than I occasionally get even when on my supplements, but my pulse pressure narrowed by about 10 points on average. Pulse pressure is the distance between systolic and diastolic, and a healthy pulse pressure is about 40. My pulse pressure was often 25-30, but I had one reading of it at 55. This isn't stable for me. I'm generally around 30-40 when on supplements, even if my overall blood pressure is on the low end.
- Disturbed sleep. I couldn't take any sleeping aids for 2 nights, which was torture. Both nights it took hours of just laying there to fall asleep, even though I was exhausted from work. Once I got to sleep I found myself waking up every couple of hours. Small sounds in the house would also wake me up. I wouldn't feel rested during the day. Last night, after finishing the coritosl test, I took my sleep pills. They normally take about hour to kick in, but they made my whole body tingle and shut down within about 10 minutes. I felt like I was fighting sleep, but after shutting the light off and trying to sleep I couldn't fall asleep for probably an hour. Once I did fall asleep I stayed asleep, thankfully.
- Couldn't find joy in doing anything, even things I liked. The first day wasn't so bad, but the second day (yesterday) was awful. Everything felt like work, most things annoyed me, and nothing was enjoyable to do. I was apathetic, but worse than that, I felt emotionally muted.
- Poor memory. I found it hard to recall information, remember how and when something happened, and found it hard to retain the instructions I was reading over and over. After only 2 1/2 days without supplements! This shows how sensitive my body is.
- Poor vision and balance. A big part of this was being hypoglycemic, but even when my blood sugar was in the 90's I would have sensations of the floor moving below me, me swaying when I was not, and objects in the distance vibrating when they were not.
- Joint aches, but surprisingly no fibromyalgia. I was feeling very inflammed.
- Digestion plugged up. I gained about 5 pounds in bloat in the last 2 days, and my IBS is acting up. I did actually take my digestive enzymes to help, but they didn't help much. I was having regular bowel movements, but staying bloated and food wouldn't move through me well.
- Intense fatigue, but not constantly. I was able to work for the first 1/2 day and the second full day without supplements, but I was dragging and "flight mode" was kicking in a lot when I was encountering minor problems. At times it took willpower to lift my legs to walk. Yesterday I had trouble getting up and moving at times, but had weird spurts of jittery energy in which I was able to run up and downstairs to do laundry.
What did I learn from all this? That my supplements really are doing me good! I was able to write this post because I'm finally able to drink a cup of green tea, which tastes like heaven right now. My adrenal glands still have A LOT of healing to do, even after 3 years of trying to repair them. I don't need the test results to feel this, but I'm very curious about how my results will look.
Tuesday, February 16, 2016
Music For a Difficult Healing Experience
At the moment, I'm feeling really spacey, low, dreamy, over tired... my blood pressure is 97/55, and I'm feeling that it's hard to move. So I'm in a mood. Sometimes my favorite thing to do in this "mood" is listen to validating music while laying back and letting my mind wander to it. I thought I'd share some songs I find the most validating for me.
(Sorry about the formatting - again. Blogger really doesn't allow me to control these things.)
Muse - Explorers
One of my favorite songs, ever. It's a dark lullaby written for his newborn son, but it really resonates with me when thinking about all the rules I have to follow to keep my body healthy enough to function somewhat normally. I'm stuck in my house because the public makes me sick with their chemicals. I'm struggling to buy fresh organic foods where I live because we get whatever is left on the shipments to all the stores in our area. And so forth.
"Free me, I'll free you. Free us from this world! We don't belong here, it was a mistake imprisoning our souls. Can you free me? Free me from this world? Running around in circles feeling caged by endless rules. Can you free me? Free me from this world."
Matchbox Twenty - Unwell
Who doesn't resonate with this song every now and then? Rob Thomas isn't always a lyrical master (such as "Push", lol!), but when he gets actually gets a song right, he nails the message beautifully. This song always rings true, no matter how many years go by since it was released.
"I'm not crazy, I'm just a little unwell, I know right now you can't tell, but stay a while and maybe then you'll see a different side of me. I'm not crazy, I'm just a little impaired. I know right now you don't care, but soon enough you're gonna think of me, and how I used to be: Me."
Jars of Clay - Work
This song is hard to listen to because of the anxious pounding beat, but lyrically it's spot-on.
"Just in case, I will leave my things packed, so I can run away. I cannot trust these voices. I don't have a line of prospects that can give some kind of peace. There is nothing left to cling to that can bring me sweet release. I have no fear of drowning, It's the breathing that's taking all this work."
Emiliana Torrini - Tuna Fish
"Did you know that tuna fish float up to the surface? Belly to the moonlight just to cool down their heart down. 'Cause it helps them just to think about the hurtful things. I guess it's just one way to get them some sedation."
Emiliana Torrini - Birds
I think Emiliana and I are kindered spirits, because she writes gorgeous songs about being tired while observing people and animals and wondering how they work. I have to assume she's a low energy, people-watching, creation-admiring person like me to write so many songs of this nature.
"Lend me yours wings and teach me how to fly. Show me when it rains, the place you go to hide."
Muse - Map of the Problematique
This song often pops into my head when I'm feeling hopelessly angry about feeling sick with a reaction from someone's perfume or heavy scents in a store, or especially after opening a new book with the thick ink smell. I'm angry about getting poisoned so easily, and others refuse to change to be less toxic.
"Life will flash before my eyes, So scattered and lost, I want to touch the other side. And no one thinks they are to blame. Why can't we see that when we bleed we bleed the same?"
U2 - Acrobat
And this is what I think of when I need to feel some hope.
"When I first met you girl, you had fire in your soul. What happened t'your face of melting snow? Now it looks like this! And you can swallow or you can spit. You can throw it up, or choke on it. And you can dream, so dream out loud. You know that your time is coming round. So don't let the bastards grind you down."
The Beach Boys (Brian Wilson) - Hang on To Your Ego
This is the original version of the song that Brian Wilson wrote, and the alternative version "I know there's an answer" was released on Pet Sounds because the Beach Boys didn't like Brian's lyrics. I think Brian's original lyrics are brilliant.
This is the ultimate "validation" song.
"I know so many people who think they can do it alone. They isolate their heads and stay in their saftey zones. Now what can you tell them?And what can you say that won't make them defensive? Hang on to your ego! Hang on, but I know that you're gonna lose the fight."
(Sorry about the formatting - again. Blogger really doesn't allow me to control these things.)
Muse - Explorers
One of my favorite songs, ever. It's a dark lullaby written for his newborn son, but it really resonates with me when thinking about all the rules I have to follow to keep my body healthy enough to function somewhat normally. I'm stuck in my house because the public makes me sick with their chemicals. I'm struggling to buy fresh organic foods where I live because we get whatever is left on the shipments to all the stores in our area. And so forth.
"Free me, I'll free you. Free us from this world! We don't belong here, it was a mistake imprisoning our souls. Can you free me? Free me from this world? Running around in circles feeling caged by endless rules. Can you free me? Free me from this world."
Matchbox Twenty - Unwell
Who doesn't resonate with this song every now and then? Rob Thomas isn't always a lyrical master (such as "Push", lol!), but when he gets actually gets a song right, he nails the message beautifully. This song always rings true, no matter how many years go by since it was released.
"I'm not crazy, I'm just a little unwell, I know right now you can't tell, but stay a while and maybe then you'll see a different side of me. I'm not crazy, I'm just a little impaired. I know right now you don't care, but soon enough you're gonna think of me, and how I used to be: Me."
Jars of Clay - Work
This song is hard to listen to because of the anxious pounding beat, but lyrically it's spot-on.
"Just in case, I will leave my things packed, so I can run away. I cannot trust these voices. I don't have a line of prospects that can give some kind of peace. There is nothing left to cling to that can bring me sweet release. I have no fear of drowning, It's the breathing that's taking all this work."
Emiliana Torrini - Tuna Fish
"Did you know that tuna fish float up to the surface? Belly to the moonlight just to cool down their heart down. 'Cause it helps them just to think about the hurtful things. I guess it's just one way to get them some sedation."
Emiliana Torrini - Birds
I think Emiliana and I are kindered spirits, because she writes gorgeous songs about being tired while observing people and animals and wondering how they work. I have to assume she's a low energy, people-watching, creation-admiring person like me to write so many songs of this nature.
"Lend me yours wings and teach me how to fly. Show me when it rains, the place you go to hide."
Muse - Map of the Problematique
This song often pops into my head when I'm feeling hopelessly angry about feeling sick with a reaction from someone's perfume or heavy scents in a store, or especially after opening a new book with the thick ink smell. I'm angry about getting poisoned so easily, and others refuse to change to be less toxic.
"Life will flash before my eyes, So scattered and lost, I want to touch the other side. And no one thinks they are to blame. Why can't we see that when we bleed we bleed the same?"
U2 - Acrobat
And this is what I think of when I need to feel some hope.
"When I first met you girl, you had fire in your soul. What happened t'your face of melting snow? Now it looks like this! And you can swallow or you can spit. You can throw it up, or choke on it. And you can dream, so dream out loud. You know that your time is coming round. So don't let the bastards grind you down."
The Beach Boys (Brian Wilson) - Hang on To Your Ego
This is the original version of the song that Brian Wilson wrote, and the alternative version "I know there's an answer" was released on Pet Sounds because the Beach Boys didn't like Brian's lyrics. I think Brian's original lyrics are brilliant.
This is the ultimate "validation" song.
"I know so many people who think they can do it alone. They isolate their heads and stay in their saftey zones. Now what can you tell them?And what can you say that won't make them defensive? Hang on to your ego! Hang on, but I know that you're gonna lose the fight."
Sunday, December 6, 2015
New Lab Tests
What a week. Something suddenly went wrong in my body. Fibromyaliga flares (whatever the root cause, true fibro or not, I'm getting pain,) nerve pain in my feet in the morning, but worst of all: I've felt anemic! I went to the clinic to have a few labs drawn on Friday at closing time, so I have my results, but no doctor has contacted me yet. I do not appear to be iron anemic based on the labs and blood color, but there's something called Macrocytic anemia that could be concluded from my labs. Sanford's normal range (who I went through) is a little different from the other normal ranges I've seen for this CBC (complete blood count), so another company would say a few of my results are even further outside the normal range:
The nurse told me my red blood cells are too large, which is essentially macrocytic anemia. This can be caused by B12 and Folate deficiency. This makes sense in my case, but I don't have labs to show if I truly am low or not. However, I'm told that B6 toxicity is another sign that B12 is too low, and when B12 is low, folate is too low. Because I have not yet spoken to my doctor about my results (weekend), I'm not going to state anything as fact at this point.
My symptoms are:
-Dizzy all the time
-Hard time catching my breath
-Rapid heart rate after eating or getting up and moving around a little bit
-Poor circulation, whites in hands and feet
-Fibromyalgia pain in my feet, shins, elbows, upper neck
-Stabbing stomach pains after eating (but not always)
-Extreme fatigue during day, hard time falling asleep at night
-Poor mental clarity
-Weakness
-Eye pain (usually associated with low blood pressure for me, but I didn't get that measured.)
-Either a fever or low body temp
-Chest pressure (feels tight and gritty)
These were strong enough symptoms that I felt unable to drive, and called in sick to work the past two days. I feel bad about that, but I don't want to be fainting on the job or while driving either.
Since finding out I have vitamin b6 toxicity, I quit the B-Complex I was on and started taking a MTHFR friendly Multi Vitamin and Methyl B12 (predicting that I have MTHFR, which, weirdly, I do not.) However, from what I'm reading, food and supplements are not necessarily enough to get B12 levels up. I have felt like I've been growing weaker since quitting the B-Complex, but that also happened at the same time as winter starting, and winter tends to have a profound effect on me.
I'm also being encouraged to go on an elimination diet for salicylates. The idea of even bothering to do this is stressing me out, but it's bothering me because I agree it's a possibility that I have a salicylate sensitivity. Almonds, broccoli, and caffeine, which are all very high in salicylates, have been bothering me for close to a year. Broccoli and caffeine products (other than tea) are very high in sulfur, though, and I know I have a sulfur sensitivity. If I were to try going on a low salicylate diet I'd be down to eating very very few foods. I'm not sure I can eliminate that much food. I'm already avoiding all grains, starches, nightshades, dairy, sulfur rich foods, and sugar (including fruit.) Avoiding salicylates would cut this limited diet in half. The problem is, salicylate sensitivity symptoms are very similar to what I have been feeling like. That said, I don't like to internet diagnose myself!
At the very least, I want the dizziness to stop.
The nurse told me my red blood cells are too large, which is essentially macrocytic anemia. This can be caused by B12 and Folate deficiency. This makes sense in my case, but I don't have labs to show if I truly am low or not. However, I'm told that B6 toxicity is another sign that B12 is too low, and when B12 is low, folate is too low. Because I have not yet spoken to my doctor about my results (weekend), I'm not going to state anything as fact at this point.
My symptoms are:
-Dizzy all the time
-Hard time catching my breath
-Rapid heart rate after eating or getting up and moving around a little bit
-Poor circulation, whites in hands and feet
-Fibromyalgia pain in my feet, shins, elbows, upper neck
-Stabbing stomach pains after eating (but not always)
-Extreme fatigue during day, hard time falling asleep at night
-Poor mental clarity
-Weakness
-Eye pain (usually associated with low blood pressure for me, but I didn't get that measured.)
-Either a fever or low body temp
-Chest pressure (feels tight and gritty)
These were strong enough symptoms that I felt unable to drive, and called in sick to work the past two days. I feel bad about that, but I don't want to be fainting on the job or while driving either.
Since finding out I have vitamin b6 toxicity, I quit the B-Complex I was on and started taking a MTHFR friendly Multi Vitamin and Methyl B12 (predicting that I have MTHFR, which, weirdly, I do not.) However, from what I'm reading, food and supplements are not necessarily enough to get B12 levels up. I have felt like I've been growing weaker since quitting the B-Complex, but that also happened at the same time as winter starting, and winter tends to have a profound effect on me.
I'm also being encouraged to go on an elimination diet for salicylates. The idea of even bothering to do this is stressing me out, but it's bothering me because I agree it's a possibility that I have a salicylate sensitivity. Almonds, broccoli, and caffeine, which are all very high in salicylates, have been bothering me for close to a year. Broccoli and caffeine products (other than tea) are very high in sulfur, though, and I know I have a sulfur sensitivity. If I were to try going on a low salicylate diet I'd be down to eating very very few foods. I'm not sure I can eliminate that much food. I'm already avoiding all grains, starches, nightshades, dairy, sulfur rich foods, and sugar (including fruit.) Avoiding salicylates would cut this limited diet in half. The problem is, salicylate sensitivity symptoms are very similar to what I have been feeling like. That said, I don't like to internet diagnose myself!
At the very least, I want the dizziness to stop.
Sunday, October 25, 2015
How I Respond to MCS: Before, During, and After.
I have learned that I need to use my sauna and neti pot after ever shift at work. If I do not, I have agitated sleep full of angry and annoying dreams and I wake up feeling exhausted. I have a headache and some pain while at work, but the real reaction tends to be delayed (like many reactions for me) and hits me hours later. Yesterday I did go for a hike through the trees along the river, a little ways outside of town and away from any car exhaust. I was hoping the fresh crisp air would help as much as the sauna, but it didn't. It just left me feeling very exhausted. I'm still very fatigued this morning.
I attended my university's Jazz Band, Vocal Jazz, and Steel Drum Band concert a few days ago because I was craving to do something "normal" with my husband and this sounded like fun. When my husband and I were students, he was in both Jazz Band and Steel Drum band, so it was nice to go to reminisce. It was located at the main concert call downtown, where the local symphony performs. I knew that many ladies wear heavy perfume at those concerts, as they're dressy affairs, and I know that cloth seating tends to absorb perfume. This was not a dressy event, mostly college students in the audience, so I thought there was a chance I could get away with going. Unfortunately, I had heart palpitations the entire time. I could feel something inside my ear twitching every so often too. I wore my ionizer necklace during the concert. It helped some, and I know this because I had to shut it off for the last 15 because the battery was running low, causing it to hum loudly. I developed a headache and some eye pain after I shut it off. Because we got home late, I did not use my sauna. I just took an extra glutathione and NAC, which helped a little. I had agitated sleep that night too. Was it worth going? I'm undecided. It was honestly so nice to feel "normal" and get out of the house with my husband that I think this feeling overshadowed the MCS reactions.
MCS is so frustrating. It hinders my ability to be me - I can't go places I want, I can't do things I want, and I can't spend time with people I can't trust to be safe. My reactions are not as severe as many people with MCS. I survived the concert hall with lots of discomfort, whereas others would be sent to the ER by it. It doesn't mean I'm not hurting, and I don't want to go to places or do things that cause pain.
This is what I've learned to do before, during, and after exposures in order to recover the fastest:
1. Take glutathione and NAC throughout the day every day. I take 1 of each with breakfast, lunch, and dinner. I take my Naturopathic doctor's brand, but there are other brands on the market. I can't speak to the quality of these brands, sorry.
2. Take extra glutathione and NAC right before going somewhere risky, like church.
3. Wearing a mask (I use Vog Mask) helps some, but some things that cause reactions still bother my eyes, ears, and skin. They stick to my clothes, hair, and skin. It's best to just avoid. There's no armor that works. But if I need to go somewhere risky, such as on an airplane, wearing a mask does help some. (See my review of my Vog Mask here.)
4. Eat protein and fat every 2 hours. I get hypoglycemic, and I've noticed that keeping my blood sugar as stable as possible helps me avoid feeling faint and overly dizzy during a reaction. I used to get the feeling of very low blood sugar, blood pressure, and faintness fairly often, definitely made a lot worse by reactions, but I haven't experienced this much in the last year.
5. I wash my clothes very often. If I go to a risky place, like church or work, I put the clothes I wore in that place in the laundry as soon as possible. Toxins tend to stick to clothes and I don't want to keep wearing what I was reacting to. (I don't know that I have to say this, but make sure you're using natural plant-based detergent that doesn't cause more clothing toxicity. I really like Biokleen's Free & Clear line, both the powder and liquid.)
6. Getting directly in the shower helps, but I recover much faster and tend to suffer less bad reactions when I use my far infrared sauna often. The more often I use it, the more I can tolerate toxin exposure. I've learned to get in the sauna after each shift at work. I sit in it and sweat for 30-40 minutes, pushing out toxins in my skin and increasing my circulation so my body can clean it self out better, then get right into the shower. I bought a $200 portable sauna on Amazon about 2 years ago. It's made in China, and some people with MCS are likely to react to it. A real, full-sized, wooden sauna is always better (they work better too,) but I have no idea which one on the market is best, safe, most effective, etc - the one I linked to is just an example. But I have no problems with it at this point (when I first bought it I probably reacting constantly and didn't understand that MCS was the problem, so I don't remember how it made me feel when it was new - it was when I first started seeing my doctor who's done so much good for me.)
7. Sometimes I opt to take a hot bath instead. I can add salt, clay, ginger, and other good stuff to detox when I take a hot bath (see previous post for more details on my favorite detox baths.) I make sure the water is as hot as I can stand it so that I sweat a lot. I then take a full shower after my bath.
8. Neti Pot. Seriously: Neti Pot. (The ceramic kind - NOT plastic!) I know many of you that I've talked to are afraid of them. Normally I would accept this and help you find a different solution, but in this case, I'm going to keep pushing it. Use a Neit Pot! They do not hurt, you can breath while using it, and it's a very low cost solution for something that helps so incredibly much! I always use reverse osmosis filtered water that's been slightly warmed on the stove. Do not use tap water - you do not want to pour all sorts of contaminates through your nose, such as live bacteria or organisms that didn't get cleaned out at the water processing plant. Pushing the water through my nasal passages simply helps clean out a lot of crap that I've breathed in. Furthermore, the salt that I add to the water stays in the nasal passages for about 30 minutes afterwords. It soaks up mucus and clumps it up so that I can spit or blow it out. Mucus is what traps toxins, so getting rid of the mucus is very important to detoxing. Yes, the water only flows through the nasal passages, but the salt absorbs mucus from all of the sinuses, even my ears. My Neti Pot is a staple for me!
9. Rest. If I don't give my body rest so that it can recover, repair, and recuperate, my body doesn't let me push forward. I can't simply go back to work the next day. Reactions take a lot of energy, energy that I'm short on anyway (chronic fatigue!) I MUST let my body rest for as long as it takes if I plan to keep moving forward in life. Sometimes I only need half a day. Sometimes I need a few days of doing nothing. I have to listen to my body and do as it says.
10. I have to keep my home as safe as possible at all times. I never bring anything into my living space that's risky for me. I don't invite people over. I use my own cloth shopping bags and wash them regularly so that I'm not bringing home the store's bags that are infused with the smell of the store. I vacuum, sweep, mop, and clean regularly. I run an air purifier regularly. I dust regularly. This is not to say my house looks organized: it's not. I don't spend energy picking up after myself, it's poorly decorated, and sometimes looks like I just don't care. I just focus on keeping the home environment safe enough. I only have so much energy to spend.
11. I do have many houseplants. Mold and fungus has been an occasional problem with them, but I stay proactive with my plants. I keep a close watch for the mold and fungus and clean it out the moment I spot any. Otherwise, they're great. Certain houseplants clean the air. Check out this article for more details.
12. I practice a lot of escapism. Instead of giving in to the feelings of anger, agitation, pain, discomfort, anxiety, depression, and other unpleasantness I experience during reactions and periods of poor health, I try to do something that allows me to mentally escape. I do something really risky: I bring my phone into the bath with me so I can read or watch videos while bathing. I watch Netflix while I use the sauna. The reason for this is that if I don't have a distraction, my thoughts get really anxious and dark, and I feel a lot worse and more fatigued. Negative thoughts take a lot of energy, and often times I don't have enough power over the negative mental feeling. So I distract myself with something until the reaction calms down. I spend a lot of time playing video games, reading easy books and graphic novels, and watching my favorite series. These things occupy my mind, which is a huge blessing.
Note about 12: Lots of people have argued that I should be practicing mindfulness, guided meditation, or prayer instead of using distractions. I'm sorry. These things simply do not work for me. At all. I don't have the energy to control my thoughts - these things take a lot more work and stamina than I have to give. If these things work for you, yes, you're probably going to recover faster employing them. They allow for a deeper rest and a better calm. They train us to have better control over our mental and spiritual states. These things are important! But I'm sorry, they're not enough to combat my anxiety and reaction agitation. I tried praying the rosary while in the sauna during a really nasty reaction once. I was shaking with anxiety and desperate to calm down. The rosary should be very calming, reflective, and meditative - it simply called attention to all my problems that I wanted to share with God. It caused me to think about how hard life is, how much suffering we go through, and how I just wanted to be dead to end the suffering. Prayer is a very powerful thing. I strongly believe in God and I strongly believe in the importance of prayer. But I've learned that my prayer isn't effective during my deep anxiety times - it makes me feel worse. I pray when I'm feeling strong so that I can actually calm my mind enough to listen to God. It's a big reason why I'm struggling so much with church - church causes me to react, and I can't focus or be worshipful when I'm reacting.
13: I take care of my health to the best of my ability. I'm taking a ton of supplements , eating a very strict diet, exercising the best I can, practicing avoidance to the best of my ability, avoiding as much stress as possible, etc. I'm doing what I can to heal my chronic illnesses, weak organs, etc. My issues are my own. You need to learn your body and address your body's needs. The stronger our body's health, the better it can tolerate environmental toxins... or at least recover from reactions.
14. I try to spend plenty of time in nature, in the trees or by the sea, away from car exhaust, cigarette smoke, toxic people, city pollution... you get the idea. Nature is the ultimate air purifier. It's the ultimate stress reliever. It also helps me adjust to the changing seasons better. The more time I spend outside, the less traumatic seasonal changes are for me (despite that winter is horrible anyway.)
(Isn't it just calming thinking about being in nature?)
15. Therapies help. I can't say enough about how much chiropractic, acupuncture, and massage helps me. All of these help the body work optimally, all of which will relieve body tension, stress, and toxin build up.
16. I do use a Himalayan Salt Lamp. This is one of my favorite items to sell at the store I work at. It is not enough on its own to help with a reaction, but it does serve an important role for me. The salt releases negative ions into the air to counter the positive ions. Positive ions are harsh on our bodies: electricity/ lightning, environmental toxins, etc. The negative ions clear the air so our bodies don't have to fight the environment as much. They are very calming. My favorite time to use it is right before bed. I read to the light of it. I feel less agitated around it, which is really important in the process of falling asleep.
The ionizer necklace I use works very similarly: it puts out negative ions near my body to help me breathe a little better. It does help some.
(Note: There's a lot of New Age spirituality tied to them, and this has turned some of my customers off from buying one. I've never used it to call spirits, work magic, fortune telling, etc - I don't believe in this stuff, and the lamp has never drawn me in to any type of witch craft. Keep in mind that you can tie spirituality into any object, such as gemstones and minerals. I don't believe in the spiritual properties of gemstones, but they're really pretty and I wear them. Salt is a natural product of the earth, it was around long before humans even existed.)
I encourage you to share with me what helps you! Leave comments on this blog so others can read them too.
I attended my university's Jazz Band, Vocal Jazz, and Steel Drum Band concert a few days ago because I was craving to do something "normal" with my husband and this sounded like fun. When my husband and I were students, he was in both Jazz Band and Steel Drum band, so it was nice to go to reminisce. It was located at the main concert call downtown, where the local symphony performs. I knew that many ladies wear heavy perfume at those concerts, as they're dressy affairs, and I know that cloth seating tends to absorb perfume. This was not a dressy event, mostly college students in the audience, so I thought there was a chance I could get away with going. Unfortunately, I had heart palpitations the entire time. I could feel something inside my ear twitching every so often too. I wore my ionizer necklace during the concert. It helped some, and I know this because I had to shut it off for the last 15 because the battery was running low, causing it to hum loudly. I developed a headache and some eye pain after I shut it off. Because we got home late, I did not use my sauna. I just took an extra glutathione and NAC, which helped a little. I had agitated sleep that night too. Was it worth going? I'm undecided. It was honestly so nice to feel "normal" and get out of the house with my husband that I think this feeling overshadowed the MCS reactions.
MCS is so frustrating. It hinders my ability to be me - I can't go places I want, I can't do things I want, and I can't spend time with people I can't trust to be safe. My reactions are not as severe as many people with MCS. I survived the concert hall with lots of discomfort, whereas others would be sent to the ER by it. It doesn't mean I'm not hurting, and I don't want to go to places or do things that cause pain.
This is what I've learned to do before, during, and after exposures in order to recover the fastest:
1. Take glutathione and NAC throughout the day every day. I take 1 of each with breakfast, lunch, and dinner. I take my Naturopathic doctor's brand, but there are other brands on the market. I can't speak to the quality of these brands, sorry.
2. Take extra glutathione and NAC right before going somewhere risky, like church.
3. Wearing a mask (I use Vog Mask) helps some, but some things that cause reactions still bother my eyes, ears, and skin. They stick to my clothes, hair, and skin. It's best to just avoid. There's no armor that works. But if I need to go somewhere risky, such as on an airplane, wearing a mask does help some. (See my review of my Vog Mask here.)
4. Eat protein and fat every 2 hours. I get hypoglycemic, and I've noticed that keeping my blood sugar as stable as possible helps me avoid feeling faint and overly dizzy during a reaction. I used to get the feeling of very low blood sugar, blood pressure, and faintness fairly often, definitely made a lot worse by reactions, but I haven't experienced this much in the last year.
5. I wash my clothes very often. If I go to a risky place, like church or work, I put the clothes I wore in that place in the laundry as soon as possible. Toxins tend to stick to clothes and I don't want to keep wearing what I was reacting to. (I don't know that I have to say this, but make sure you're using natural plant-based detergent that doesn't cause more clothing toxicity. I really like Biokleen's Free & Clear line, both the powder and liquid.)
6. Getting directly in the shower helps, but I recover much faster and tend to suffer less bad reactions when I use my far infrared sauna often. The more often I use it, the more I can tolerate toxin exposure. I've learned to get in the sauna after each shift at work. I sit in it and sweat for 30-40 minutes, pushing out toxins in my skin and increasing my circulation so my body can clean it self out better, then get right into the shower. I bought a $200 portable sauna on Amazon about 2 years ago. It's made in China, and some people with MCS are likely to react to it. A real, full-sized, wooden sauna is always better (they work better too,) but I have no idea which one on the market is best, safe, most effective, etc - the one I linked to is just an example. But I have no problems with it at this point (when I first bought it I probably reacting constantly and didn't understand that MCS was the problem, so I don't remember how it made me feel when it was new - it was when I first started seeing my doctor who's done so much good for me.)
7. Sometimes I opt to take a hot bath instead. I can add salt, clay, ginger, and other good stuff to detox when I take a hot bath (see previous post for more details on my favorite detox baths.) I make sure the water is as hot as I can stand it so that I sweat a lot. I then take a full shower after my bath.
8. Neti Pot. Seriously: Neti Pot. (The ceramic kind - NOT plastic!) I know many of you that I've talked to are afraid of them. Normally I would accept this and help you find a different solution, but in this case, I'm going to keep pushing it. Use a Neit Pot! They do not hurt, you can breath while using it, and it's a very low cost solution for something that helps so incredibly much! I always use reverse osmosis filtered water that's been slightly warmed on the stove. Do not use tap water - you do not want to pour all sorts of contaminates through your nose, such as live bacteria or organisms that didn't get cleaned out at the water processing plant. Pushing the water through my nasal passages simply helps clean out a lot of crap that I've breathed in. Furthermore, the salt that I add to the water stays in the nasal passages for about 30 minutes afterwords. It soaks up mucus and clumps it up so that I can spit or blow it out. Mucus is what traps toxins, so getting rid of the mucus is very important to detoxing. Yes, the water only flows through the nasal passages, but the salt absorbs mucus from all of the sinuses, even my ears. My Neti Pot is a staple for me!
9. Rest. If I don't give my body rest so that it can recover, repair, and recuperate, my body doesn't let me push forward. I can't simply go back to work the next day. Reactions take a lot of energy, energy that I'm short on anyway (chronic fatigue!) I MUST let my body rest for as long as it takes if I plan to keep moving forward in life. Sometimes I only need half a day. Sometimes I need a few days of doing nothing. I have to listen to my body and do as it says.
10. I have to keep my home as safe as possible at all times. I never bring anything into my living space that's risky for me. I don't invite people over. I use my own cloth shopping bags and wash them regularly so that I'm not bringing home the store's bags that are infused with the smell of the store. I vacuum, sweep, mop, and clean regularly. I run an air purifier regularly. I dust regularly. This is not to say my house looks organized: it's not. I don't spend energy picking up after myself, it's poorly decorated, and sometimes looks like I just don't care. I just focus on keeping the home environment safe enough. I only have so much energy to spend.
11. I do have many houseplants. Mold and fungus has been an occasional problem with them, but I stay proactive with my plants. I keep a close watch for the mold and fungus and clean it out the moment I spot any. Otherwise, they're great. Certain houseplants clean the air. Check out this article for more details.
12. I practice a lot of escapism. Instead of giving in to the feelings of anger, agitation, pain, discomfort, anxiety, depression, and other unpleasantness I experience during reactions and periods of poor health, I try to do something that allows me to mentally escape. I do something really risky: I bring my phone into the bath with me so I can read or watch videos while bathing. I watch Netflix while I use the sauna. The reason for this is that if I don't have a distraction, my thoughts get really anxious and dark, and I feel a lot worse and more fatigued. Negative thoughts take a lot of energy, and often times I don't have enough power over the negative mental feeling. So I distract myself with something until the reaction calms down. I spend a lot of time playing video games, reading easy books and graphic novels, and watching my favorite series. These things occupy my mind, which is a huge blessing.
Note about 12: Lots of people have argued that I should be practicing mindfulness, guided meditation, or prayer instead of using distractions. I'm sorry. These things simply do not work for me. At all. I don't have the energy to control my thoughts - these things take a lot more work and stamina than I have to give. If these things work for you, yes, you're probably going to recover faster employing them. They allow for a deeper rest and a better calm. They train us to have better control over our mental and spiritual states. These things are important! But I'm sorry, they're not enough to combat my anxiety and reaction agitation. I tried praying the rosary while in the sauna during a really nasty reaction once. I was shaking with anxiety and desperate to calm down. The rosary should be very calming, reflective, and meditative - it simply called attention to all my problems that I wanted to share with God. It caused me to think about how hard life is, how much suffering we go through, and how I just wanted to be dead to end the suffering. Prayer is a very powerful thing. I strongly believe in God and I strongly believe in the importance of prayer. But I've learned that my prayer isn't effective during my deep anxiety times - it makes me feel worse. I pray when I'm feeling strong so that I can actually calm my mind enough to listen to God. It's a big reason why I'm struggling so much with church - church causes me to react, and I can't focus or be worshipful when I'm reacting.
13: I take care of my health to the best of my ability. I'm taking a ton of supplements , eating a very strict diet, exercising the best I can, practicing avoidance to the best of my ability, avoiding as much stress as possible, etc. I'm doing what I can to heal my chronic illnesses, weak organs, etc. My issues are my own. You need to learn your body and address your body's needs. The stronger our body's health, the better it can tolerate environmental toxins... or at least recover from reactions.
14. I try to spend plenty of time in nature, in the trees or by the sea, away from car exhaust, cigarette smoke, toxic people, city pollution... you get the idea. Nature is the ultimate air purifier. It's the ultimate stress reliever. It also helps me adjust to the changing seasons better. The more time I spend outside, the less traumatic seasonal changes are for me (despite that winter is horrible anyway.)
(Isn't it just calming thinking about being in nature?)
15. Therapies help. I can't say enough about how much chiropractic, acupuncture, and massage helps me. All of these help the body work optimally, all of which will relieve body tension, stress, and toxin build up.
16. I do use a Himalayan Salt Lamp. This is one of my favorite items to sell at the store I work at. It is not enough on its own to help with a reaction, but it does serve an important role for me. The salt releases negative ions into the air to counter the positive ions. Positive ions are harsh on our bodies: electricity/ lightning, environmental toxins, etc. The negative ions clear the air so our bodies don't have to fight the environment as much. They are very calming. My favorite time to use it is right before bed. I read to the light of it. I feel less agitated around it, which is really important in the process of falling asleep.
The ionizer necklace I use works very similarly: it puts out negative ions near my body to help me breathe a little better. It does help some.
(Note: There's a lot of New Age spirituality tied to them, and this has turned some of my customers off from buying one. I've never used it to call spirits, work magic, fortune telling, etc - I don't believe in this stuff, and the lamp has never drawn me in to any type of witch craft. Keep in mind that you can tie spirituality into any object, such as gemstones and minerals. I don't believe in the spiritual properties of gemstones, but they're really pretty and I wear them. Salt is a natural product of the earth, it was around long before humans even existed.)
I encourage you to share with me what helps you! Leave comments on this blog so others can read them too.
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