I wish I could go to a gym and work out for an hour. I often day dream about lifting weights like I used to. I loved the feeling of being sore and tight in my muscles, feeling a natural tiredness from actually using my body well. I loved seeing muscles forming on my arms and legs. I loved shaping my body by staying toned. It felt really good. Now when I look at women in great shape it's a little hard for me. I'm really happy for them, but it makes me want to join them at the gym and get back into shape.
I really do my best to work out, but it's really challenging with chronic illness, and often ineffective or harmful. Let me break this down:
- Fatigue. I often have the mental willpower to sit at the machine and start pumping weights, so I'll go for it. And then I can't even finish a set before I run out of energy. This isn't a de-conditioning issue. If it was then my diet, supplements, and regular practice with the weights would mean I could do more every time. If it's de-conditioning, then I can actually improve. No, this is a problem of my body deflating with every pump of the weights until I have nothing left to stand up with. Every time I try I can do a different amount of weight lifting until the fatigue wins. No, it's not a de-conditioning issue, because if it was, I would be able to consistently do more with practice.
- Pain. I don't mean the normal wear and tear on muscles from working out. You know, the "it hurts so good!" pain that I love to feel. I mean joints on fire. I mean feeling ripping in my ovary from pushing or stretching. I mean chest pain from my HR going really high after just a minute of working hard. I mean throbbing in my head from blood not knowing how to circulate correctly while I'm working out. I mean an abnormal constriction in my neck and shoulder muscles that makes them super tight and in pain for a day or two after, like a cramp that doesn't want to be massaged out.
- Post Exertional Malaise. This is the fatigue that is the result of spending energy. For a healthy person, they might experience it for an hour or two after. They can still get stuff done if they have to, but they'll be tired and lose some motivation and focus. Their body needs to recover and they'll be fine. In my case, and the case of many people with various chronic illnesses, it's much worse. When I spend the limit of my energy or more than I have, it might take a day or two of recovery time to get back to my normal fatigued self. This means a lot more time in bed with brain fog, jello for muscles, disrupted metabolism and bathroom needs, mood issues, high heart rate with a sore achy chest, inflammation and swelling, and an inability to properly care for myself. When this is a normal response from my body, how am I supposed to work out regularly and have the ability to get stuff done? Like, having energy left to spend at my job? I have to pick and choose where my energy goes, as if my energy is money in my bank and the balance is always low.
So I do my best. What can I do?
- Walks. I feel the best results from going on walks, but the distance I can go depends greatly on how I'm feeling. 1 mile is my typical cut off point, but I have been able to go 2 miles on good days. Walking is the least taxing and most gentle way for me to move. I can move longer before my body gives out. The problem is that I live in North Dakota, so I can't be outside for half the year without a lot of weather gear on. Treadmill? I'm not getting a gym membership just to walk on the treadmill near stinky perfume-ridden people. I'm so reactive to perfume that I'll have to leave from feeling sick before I get much benefit from the gym. I've already gone this route with a YMCA membership. I also spend too much energy just getting to the gym. I'd rather just buy a treadmill for at home, but they're expensive!
- Stretching. I was in ballet and gymnastics for my entire childhood. I learned great stretches that I've continued to do my whole life. Stretching actually drains my energy rapidly. I can feel my battery depleting as I do it. But I feel like it gives me the most benefits with the least work.
- Doing short quick sets with lighter weights. I have a weight machine at home that I use, and if I do a little bit of everything over 3 to 4 minutes I can manage. It's not enough to build muscle or tone, but it allows me to use my muscles before triggering too many problems. I can feel my arms tightening up, but I can't find the energy to do enough to make them burn from building muscle.
- Tai Chi... to a certain point. I can't keep my arms lifted up long enough to stay in the poses. I like it because it works me out a lot with little effort, and it keeps me calm in the process. It isn't adrenaline-inducing. But it's physically taxing and I normally cannot make it through a sesson.
- Working on my feet for 4 hour shifts, 3 days a week. To me, going to work is my work out. I spend 3/4ths (or more) of my weekly energy at my job. I'm on my feet walking around, carrying stuff, cleaning, talking, squatting down and standing up, and just plain moving. Work leaves me feeling worn out and exhausted. I have had many many shifts where my heart physically hurts by the end. I almost always have post exertional malaise from shifts, so I'm often scheduled with a day or two between my shifts.
I want to make a special point to say that Yoga is not helpful. Why? I have POTS. Positional changes can be hard for me. Every time I try Yoga I get super dizzy, sometimes it gives me vertigo. It doesn't keep me stable while using my body.
The problem is that I still spend the majority of my time sitting or laying on my butt. It's not by choice, but by necessity. So I have a big flabby butt. The rest of my body doesn't reveal my lack of exercise that much, but my butt screams "I sit and lay too much!" I don't like it.
And that leads me to my next related issue: Clothes.
Notice how fitness and yoga clothes are the norm for women these days? Even jeans are skinny to show off our figures. Now, think of yourself as someone with chemical sensitivities that is reactive to synthetic fabrics, so you can only wear natural fibers and dyes without issues. Okay, now I want you to go shopping. Look for organic and natural clothing companies: Tasc Performance, Pact, Adventura, Synergy Organic, Toad and Co, Fisher's Finery, PrAna, Ten Tree, Groceries Apparel, Green Apple, LA Relaxed, etc. Find me some pants without added polyester that won't showcase how big my butt is. Please. And leave it in the comments when you find a pair. ;) Organic companies tend to make clothes for people who love fitness and have good bodies. Yes, they'll make sizes up to XL, but their pants (aka leggings) still tend to be tight. Almost all of these brands tailor their pants for women who do not have a curvy butt and wider hips. Maybe the problem is that I'm a size 8-10, I'm not overweight.
So I buy the pants and wear them, but I'm not happy about showing off just how out-of-shape my butt really is. I'd rather that my pants had enough thickness and structure to flatter my butt. But that's too much to ask, apparently. Carve Designs made a pair of jeans that fits my curvy figure and they're awesome, but I don't like the short inseam with the frizzy cut off bottoms. If they were full length pants I would hem them, but they're 29" - the perfect inseam length for me, so there's no room to hem.
I'm typing this post thinking about how badly I want to tone up. My mental energy wants me to go work out. My body is dizzy, feels like a brick, is sweating just sitting still in the cool air, with weak jello muscles, freezing icy cold toes, and keeps forgetting to breathe because it wants to stay still. I worked yesterday, and it was a physically demanding shift. Post exertional malaise.
Showing posts with label weight. Show all posts
Showing posts with label weight. Show all posts
Friday, February 7, 2020
Tuesday, December 31, 2019
Yearly Reflections
Hello world, my old friend. It's nice to think of you again.
Today is a day in which caffeine is only increasing my heart rate and blood pressure a little, not giving me energy. Well, perhaps enough energy to type this, but certainly not enough to move. I am one giant brick. A brick with itchy hives on my back. AGAIN. Round 4 of hives. If I had to work today I am not sure if I would find the strength to manage. All I have to do today is go to Fed Ex to make a quick drop-off. It's a 3 minute drive from my house. I'm having a difficult time even imaging myself making this trip. I have learned that when I am capable of imaging myself doing a task, then it means I have enough energy to handle it at some level.
Today is News Years Eve, the ultimate day of reflection and looking forward to new beginnings. I've been really moody for a few months - like out of control at times - so I partly want to do this post in defiance of my chronic bad mood.
So I'll be blunt.
2019 did not offer any changes to advance my healing process. That's about it. I'm the same as I have been. Exhausted, in occasional pain that ranges from mild to severe, not sleeping well to sleeping too deeply, weight has stayed between 10-20 pounds higher than I'd like, and nothing I've tried has improved me. 2019 has been a year of management.
So instead, I'll go over some of the highlights for me this year:
- I bought an Instant Pot. I HIGHLY recommend it! It has been saving time and energy, and I'm making better quality foods because it does so much of the work for me.
- I got to go to a Weird Al concert that took place 5 minutes away from my house. That was super fun - and he walked right in front of me! As a friend pointed out, this is my lame claim to fame now. Ha! This was one of those "worth getting sick" experiences, and I'm only remembering how much fun I had, not how I felt.
- My husband has begun grad school to get his doctorate, which has required him to live 3 hours a way for a few days a week. It's nothing against him, but it has given me more quiet alone time at home to be fully at rest. It's been very helpful in those moments, but also has been more stressful when he is home because the chores have increased. It has been a good experiment for me. I need to learn how to rest better and exercise my limited energy better, and I have better clarity on that now.
- I took care of a new garden this summer. My husband and father-in-law built it. Unfortunately, the weather this year has been difficult. Summer never really came before winter hit early. If I consider the weather, the garden was a success. I grew herbs and veggies and was able to eat them. Not everything grew or produced, but some things did. The energy required was a little more than I had, so it meant sacrificing doing other chores like loading the dishwasher. But I enjoyed it more!
- I have been able to develop deeper friendships with a couple of my friends, and I have people I can talk to every day about anything now. I struggle a lot with friends in person, simply because of the energy it takes. I almost always feel like I'm in a competition with everyone I talk to in person, a competition of give and take of energy. But talking online to people who are similar to me in terms of health struggles is awesome. Our energy can go into only typing to each other and reading responses on our own time. It's the lowest energy required, and it's allowing me to develop the strongest friendships I've had in many years. I'm really grateful for these people!
- The more I reflect on this year, the more I realize that this year has been about supporting my husband instead of doing much for myself. He has been taking on a lot of new challenges and succeeding. I do not believe there is any shame in women thriving in their roles of being a wife and homemaker over any type of job or career. We have moved towards a society in which women are judged on success based on their careers and how much money they make. I call BS. We should be judged on how much love we put out into the world, and that doesn't have to have anything do with money. I am valuable, and I have worked hard to understand that this year.
And so, world, I will enter the new decade in several hours. Do I need a fresh start? A new beginning? Oh yes, for sure - I think? But I won't get it, and that is okay. Next year will be a good year if I continue to manage as I have this year, and I don't foresee any major changes for me coming up this year. But I do have hope for the next decade that I will learn how to do more than manage. Perhaps I'll find the energy to finish writing my book and publish it. Perhaps I'll find a way to make more money without worsening my health. Perhaps I'll find a breakthrough with my health and get to live life with more energy again. Perhaps I'll get to experience major life changes that will give me new challenges that fit my energy level. It is very very likely that we will move. Maybe to a new city or state, maybe not. But the time to live in a place of our own is coming soon. Whatever this next year and decade have in store for me are worth looking forward to, even if it's more of the same for a while!
And now I might see if I can get a ride to Fed Ex. Ha!
But first, 10 year challenge:
2009:
Happy, full of adventure and wonder, loved to explore!
2019:
Still love to explore and enjoy being myself, but with a stoic spirit and relying on someone else to help me get around. I cut my bangs back to how they were in 2009, haha. Simplicity is easier.
Today is a day in which caffeine is only increasing my heart rate and blood pressure a little, not giving me energy. Well, perhaps enough energy to type this, but certainly not enough to move. I am one giant brick. A brick with itchy hives on my back. AGAIN. Round 4 of hives. If I had to work today I am not sure if I would find the strength to manage. All I have to do today is go to Fed Ex to make a quick drop-off. It's a 3 minute drive from my house. I'm having a difficult time even imaging myself making this trip. I have learned that when I am capable of imaging myself doing a task, then it means I have enough energy to handle it at some level.
Today is News Years Eve, the ultimate day of reflection and looking forward to new beginnings. I've been really moody for a few months - like out of control at times - so I partly want to do this post in defiance of my chronic bad mood.
So I'll be blunt.
2019 did not offer any changes to advance my healing process. That's about it. I'm the same as I have been. Exhausted, in occasional pain that ranges from mild to severe, not sleeping well to sleeping too deeply, weight has stayed between 10-20 pounds higher than I'd like, and nothing I've tried has improved me. 2019 has been a year of management.
So instead, I'll go over some of the highlights for me this year:
- I bought an Instant Pot. I HIGHLY recommend it! It has been saving time and energy, and I'm making better quality foods because it does so much of the work for me.
- I got to go to a Weird Al concert that took place 5 minutes away from my house. That was super fun - and he walked right in front of me! As a friend pointed out, this is my lame claim to fame now. Ha! This was one of those "worth getting sick" experiences, and I'm only remembering how much fun I had, not how I felt.
- My husband has begun grad school to get his doctorate, which has required him to live 3 hours a way for a few days a week. It's nothing against him, but it has given me more quiet alone time at home to be fully at rest. It's been very helpful in those moments, but also has been more stressful when he is home because the chores have increased. It has been a good experiment for me. I need to learn how to rest better and exercise my limited energy better, and I have better clarity on that now.
- I took care of a new garden this summer. My husband and father-in-law built it. Unfortunately, the weather this year has been difficult. Summer never really came before winter hit early. If I consider the weather, the garden was a success. I grew herbs and veggies and was able to eat them. Not everything grew or produced, but some things did. The energy required was a little more than I had, so it meant sacrificing doing other chores like loading the dishwasher. But I enjoyed it more!
- I have been able to develop deeper friendships with a couple of my friends, and I have people I can talk to every day about anything now. I struggle a lot with friends in person, simply because of the energy it takes. I almost always feel like I'm in a competition with everyone I talk to in person, a competition of give and take of energy. But talking online to people who are similar to me in terms of health struggles is awesome. Our energy can go into only typing to each other and reading responses on our own time. It's the lowest energy required, and it's allowing me to develop the strongest friendships I've had in many years. I'm really grateful for these people!
- The more I reflect on this year, the more I realize that this year has been about supporting my husband instead of doing much for myself. He has been taking on a lot of new challenges and succeeding. I do not believe there is any shame in women thriving in their roles of being a wife and homemaker over any type of job or career. We have moved towards a society in which women are judged on success based on their careers and how much money they make. I call BS. We should be judged on how much love we put out into the world, and that doesn't have to have anything do with money. I am valuable, and I have worked hard to understand that this year.
And so, world, I will enter the new decade in several hours. Do I need a fresh start? A new beginning? Oh yes, for sure - I think? But I won't get it, and that is okay. Next year will be a good year if I continue to manage as I have this year, and I don't foresee any major changes for me coming up this year. But I do have hope for the next decade that I will learn how to do more than manage. Perhaps I'll find the energy to finish writing my book and publish it. Perhaps I'll find a way to make more money without worsening my health. Perhaps I'll find a breakthrough with my health and get to live life with more energy again. Perhaps I'll get to experience major life changes that will give me new challenges that fit my energy level. It is very very likely that we will move. Maybe to a new city or state, maybe not. But the time to live in a place of our own is coming soon. Whatever this next year and decade have in store for me are worth looking forward to, even if it's more of the same for a while!
But first, 10 year challenge:
2009:
Happy, full of adventure and wonder, loved to explore!
2019:
Still love to explore and enjoy being myself, but with a stoic spirit and relying on someone else to help me get around. I cut my bangs back to how they were in 2009, haha. Simplicity is easier.
Thursday, May 30, 2019
Maine and Acadia National Park (Doctor Visit/ Vacation)
Last week I was halfway across the country again to visit my doctor. At this point I have nothing I want to say about lab results or my examination, so this post won't be about that. I made some enlightening observations and have some stories to share.
I spent 2 full 8 hour days at his clinic doing therapies, such as hyperbaric oxygen chamber, sauna, IVs, acupuncture, and more. The winning therapy for me this visit was the colonic irrigation. I knew my gut wasn't working well when I arrived. I didn't have a concept of just how stuffed it turned out to be. Before I give you too much information, I'll stop there. 2 colonics from 2 awesome nurses later I noticed major symptom relief. My acne (which was starting to make me look like a teenager) totally cleared up. My vision was less fuzzy again. My hiatial hernia feels like it's gone. The pressure in my upper back and shoulders is gone. I'm not burping or feeling mild heartburn anymore. Best of all? My mood! Despite raging PMS, I felt peace. This tranquility and calm took over, and I felt like I didn't have to force myself to be kind anymore. My last colonic was 9 days ago. Today I started my period (hellish pain), but guess what? The bloat went away. I dropped 5 pounds (overnight, seriously) and for the first time in who knows how long my stomach looks flat. I feel light and thin.
I took this after just getting up from laying in bed from last night until 2 pm in some pretty nasty endometriosis pain (and with a sedating pain killing tincture still flowing through me)... so ignore my tired face. It's not the best angle to see my stomach, and I'm not sure I have a photo so you can compare, but believe me. My stomach isn't bulging like it was during PMS and pre-colonic. I normally can't wear this tank (medium Pact racerback) because my stomach is too bloated for it, but it fits well now!
You might be wondering why I haven't been doing gut cleanses here at home. I actually was. I take DGL regularly, and use aloe vera with slippery elm as needed. I also take vitamin C and magnesium citrate. In fact, the week before I got on the plane, my local acupuncturist had me on an herb blend with a strong laxative effect (and she didn't tell me.) Let's just say it was working and I was in the bathroom often. It just doesn't do the same thing as a colonic. All that water from the other end does wonders.
My other therapies were very helpful too. I love glutathione and vitamin C IVs so much. They wake up a part of me that I forget exists. I don't know how to explain it, but I feel more complete for a while after them.
Normally my mom travels with me to see my doctor. This time my husband insisted on taking me so he could make a vacation out of it. As much as I love to explore, I was honestly really nervous to vacation. I was unsure that I'd have the strength and energy, and I knew I'd end up holding him back from doing as much as he wanted to. He doesn't like to stay in one place long, he likes to see as much as possible and pack the day full. I used to be the same before I got sick. Now I like the idea of finding a pretty park in a new place and relaxing there for a while.
My doctor is in Portsmouth, New Hampshire (Human Nature Natural Health.) The first evening we got to relax on the deck of our Airbnb (I'll blog about finding Airbnb's that are safe later.) We had the most beautiful sunset to watch. That last evening we went to a Jazz Club downtown - not the sort of thing I'd normally do after 2 full days of therapies that leave me very calm, peaceful, and just wanting rest to soak it in. Also not the type of place my MCS normally allows me to tolerate. I was able to relax in my chair and enjoy it with a locally grown salad full of veggies I could actually eat. It was actually a fairly safe place for me to be that evening, surprisingly!
After 2 days there, we drove up to Portland, Maine for the day. Neither of us really liked Portland all that well. Everywhere we went people were either smoking cigarettes or marijuana. The downtown stone streets smelled like smoke, which was really disappointing. It was upscale swanky shopping for things that really were not that interesting. I found a store that said "organic apparel" on its sign, so I went in. No joke, all they sold were glass blown bongs and female sex toys. (Glass sex toys? Really?) No clothing anywhere. I went into Irish Crystal store - I had to know what Irish crystals were. There were no crystals, just a ton of very dusty old merchandise that I think was supposed to have been imported.
Finding dinner in Portland was maddeningly difficult. There are two Greek places in Portsmouth where I can get lamb kabobs that I do really well with. Portland? There are a crazy number of restaurants. So many of them only serve less than 10 dishes. Most of them are so unique, like culinary art dishes, that I couldn't eat any of them. I couldn't just get a steak because they were all marinated. We settled on a restaurant on a boat and I ordered haddock with asparagus. They did listen to my dietary needs and allergies, they did make it just as I asked for. But I found myself with a mild allergic reaction (tingling lips and a swollen throat.) Probably cross contamination.
The next day we drove up the coast all the way to Surry, ME (just north of Acadia National Park.) It was a full day of driving and stopping at interesting places along the way. I was so drained, so sitting in a car all day just looking at stuff was helpful. We got out at a few interesting places.
 |
| Rockport, ME |
 |
| A big bridge with an observatory on top of one of the pillars. |
We arrived at our Airbnb in Surry that evening and found dinner at place in Ellsworth that worked out well for me. A smaller town, but much more simple menus! Notice how finding food that doesn't hurt me is a theme on this trip? I was able to cook every breakfast at our "homes," thankfully. We went into a couple of Whole Foods and stocked up on easy grass-fed hamburgers and veggies so I could cook breakfast. I also brought my own stainless steel pan. I know that sounds crazy, but I couldn't risk getting stuck with Teflon pans.
 |
| Surry, ME Airbnb - this place was great! Highly recommend for sensitive people like myself! |
We spent the last two days in Acadia National Park. Now this is where the trip gets interesting for me in terms of health. Obviously I wasn't going to do as well in cities with lots of people, pollution, and poor food options. I seem to get along with National Parks very very well!
The first day was an overcast costal misty kind of day, where it wasn't actually raining, but the mist got everything wet. I love those kind of days. We spent the first part of the day in Bar Harbor, which was everything I was hoping Portland was going to be and wasn't. The air was fresh, the streets were filled with truly interesting shops that were not filled with fragrance, it had fantastic organic and local food options, and such a pretty view. My husband doesn't like shopping, but he was enjoying the stores and we had fun. There was a hemp textile store (my favorite), a fair trade shop, a bookstore with a huge discount section of awesome books (I can't flip thorough many of them due to the ink, but my husband scored big time), an old fashioned clock making factory shop, gem and mineral stores, and more. I loved that I was able to go into many of these places with little issue. That's so rare for me. There were a few stores that I walked in and walked right out due to incense or fragrance, but overall most of the shops seemed to understand that people don't want to smell anything.
In the afternoon we drove the main loop in Acadia National Park. I loved the overcast mood over the park from the mist. It brought out all sorts of tones and colors in the trees and ocean that were not there when the sun was out that evening and the next day. We had the park mostly to ourselves. It was a Friday before Memorial Day weekend, so it wasn't busy at all. Perfection.
 |
| My hubby and I after arriving in the park |
 |
| On top of Cadillac Mountain. I took this while in the middle of a cloud that was blowing across the peak. It was cold, but stunningly beautiful. |
 |
| After the cloud blew through I snapped this photo of the view. Breathtaking! |
 |
| I climbed over some of the rocky cliffs to take lots of photos like this |
 |
| Me enjoying climbing close to the edge |
 |
 |
| The sun came out, so I hiked down these rocky cliffs and fond a cozy spot to lay in the sun. My hubby snapped the photo. He knew this was how I wanted to spend vacation: laying in the sun in a beautiful place! |
The next day we spent the majority of the day in the park. It was a very different day. The sun was out the whole day, it was warm... and the tourists started to show up. By the later afternoon the park was full and it was hard to find places to park at the attractions. Thankfully by that point we had seen most of the park without people in the way.
I was feeling well enough so I picked out a trail to hike. Yes, I wanted to hike! I wouldn't say I had energy, but I felt strong enough. I felt in control. I felt capable. It took us 2 hours to hike the trail, and there was no warning about the difficulty level. The trail started easy, just walking on a path. Then, a ways into it, turned into slightly advanced trails on rocks and narrow wooden bridges. Then there were some vertical areas. As in, the path was no longer horizontal. We had to rock climb down maybe 20 to 30 feet in a few places. I was so not prepared for that.
But guess what? My heart rate was fine. Stayed in the 90's and low 100's. It was a challenging trail that left me sore, but my body enjoyed it. It wasn't giving me any trouble. The same thing happened in Glacier National Park. When I walk around easy Bismarck trails here at home my HR tends to be in the 120's up to 170's. I go to a National Park and hike advanced trails and my HR is actually lower, my breathing is great, I'm not dizzy, and I feel strong. What's the difference? Well, a lot. It goes to show I'm not out of shape. I could be in much better shape, but I don't have a deconditioning problem. In these parks I get dense fresh clean air. No dryer sheets, car exhaust, cigarette smoke, smelly deodorant on other people, pesticides, mosquito fogging... it's just pure clean fresh air. There's also no cell service, so no EMFs. This makes for a profoundly different environment.
The problem is that I didn't feel energetic, only capable. I did end up hitting a brick wall near the end of the trail. I reached my limit of what my body could handle. I felt my mood suddenly drop, then my vision started to stagger and shake a bit, then my whole body started to shake, then I couldn't prevent involuntary crying, and then I felt the need to faint. But I didn't. Because my body resists fainting. It really likes to make me suffer through all the pre-fainting feelings until I sit or lay down. My heart hurt so badly. It was banging against my rib cage. I had air hunger. Everything was swaying. I felt like I was walking on a boat, but it was land. I ate some jerky, but it didn't seem to a be a blood sugar issue. Thankfully my hubby helped me get to the car and I was able to recover while he drove. When we got to the car there was an ambulance and firetruck at the trail head... I was worried about whoever they were there for, but also thinking to myself that I was so happy to know they were there if I had needed them.
So I had a POTS episode. But otherwise I survived a 2 hour hike on a drop-dead gorgeous coastal cliff trail!
 | ||
I choose the Great Head Trail
|
 |
| I enjoyed climbing all over these cliff edges. That's a long way down! |
 |
| This was the view of Sand Beach from the peak of the trail, a very rare natural beach on the Maine Coast |
 |
 |
| I found another great place for a nap on the cliff edge! |
 |
| I forgot how to pose in photos, so I just did silly things |
Yes, this park was therapy. My doctor's clinic was necessary therapy, but so was this park.
Even though I have chronic fatigue and it's difficult for me to do much, spending the energy I do have in places that revitalizes me is really important. I'm recovered just enough that I'm able to travel for medical reasons, and able to do simple things on vacation if I'm driven around. I can't do the driving myself anymore. It's very overstimulating and overwhelming. New places used to be invigorating to me. But as long as I don't over do it and I have the right person taking me on the trip, every once in a while a trip like this really helps. Of course I have to factor in that I had just had 2 days of therapies from my doctor! It was like taking a pill that gave me quality of life and stimulation just long enough to actually go on a vacation. I highly doubt I could manage a trip to a city like New York - I don't have the energy for that. I would collapse. But driving around and walking as I'm able to makes for a healthy vacation.
The next day we flew home, but we started the day in Bangor, ME. Any Stephen King Fans? We had a bit of time to see a few landmarks, but here are 2. The statue from IT and Stephen King's house!
I could tell you a bunch of stories, like homeless people standing at our car door and making it impossible to get out, sitting next to a Canadian ER nurse on the plane, talking to a cancer patient at my doctor's clinic... but I don't have the energy. I wanted to share these highlights instead.
Friday, August 10, 2018
Post-Surgical Depression
I really question if the laparoscopic surgery was worth it. I got a diagnosis, which is very helpful in communicating my needs with others. That alone is invaluable.
But I haven't been myself since the surgery. I've been emotionally dead too much of the time. It's not that I can't laugh and joke around with friends, but I have to be in the mood to now. I often see that my friends are having a good time and I could join in and have a ton of fun, but just don't want to laugh. I don't want to engage with them. I don't think it's just a lack of energy, it's definitely a mood issue. I feel myself going back and forth between feeling happy and engaged and completely emotionally cut off and distant. It's driving my crazy - as if I'm in PMS all the time. I'm not myself. I just can't find it in me to want to talk to people too much of the time. This all happened since the surgery.
I have had all sorts of physical issues too. My toes are almost always FREEZING icy cold, and now I have the first toe nail fungus infection I've ever had. I've gained weight and feel inflamed and puffy. My skin has broken out much more frequently and more intensely. My POTS symptoms have been worse. It's hard to stand up in one place for more than a minute. I have to lean on something or keep moving. It's exhausting to just stand still, and the blood pooling in my legs is more obvious. My feet turn purple. I've been more reactive to allergens again. Lots of sinus trouble with bloody noses this summer. My "fibromyalgia" has come back in waves. Muscle aches and cramps, tender skin, and pain with using muscles in slightly the wrong way. I have a ganglion cyst on my wrist under my thumb, and my thumb has hurt a lot. Can't squeeze anything without shooting stabbing pain. My finger and toe nails are peeling off the top layer again. My pupils are not the same size fairly often. I'm dizzy frequently. My energy level has been awfully low. My digestion is weak. I'm feeling low blood sugar before my stomach will accept food.
My husband keeps telling me I'm argumentative too. I sense he's getting frustrated with me. I'm trying. I really am. I just constantly feel like I'm at the end of my rope with energy for making decisions or tolerating changes. He's trying to get stuff done and accomplished and I just can't process it. When will I be able to handle it? I don't know. Probably in too much time to wait.
It feels like I've lost a lot of progress in my health.
I've been laying out on the back deck in the sun as much as possible. It's not been enough to warm up my freezing toes. The sun feels great, but it's not helping with the depression the way I was hoping.
Now I can't be outside easily. All the wildfires in the west are creating lots of smoke, and that smoke is heavy here now. We're in the red zone for air quality. The sky is just... gray.
But I haven't been myself since the surgery. I've been emotionally dead too much of the time. It's not that I can't laugh and joke around with friends, but I have to be in the mood to now. I often see that my friends are having a good time and I could join in and have a ton of fun, but just don't want to laugh. I don't want to engage with them. I don't think it's just a lack of energy, it's definitely a mood issue. I feel myself going back and forth between feeling happy and engaged and completely emotionally cut off and distant. It's driving my crazy - as if I'm in PMS all the time. I'm not myself. I just can't find it in me to want to talk to people too much of the time. This all happened since the surgery.
I have had all sorts of physical issues too. My toes are almost always FREEZING icy cold, and now I have the first toe nail fungus infection I've ever had. I've gained weight and feel inflamed and puffy. My skin has broken out much more frequently and more intensely. My POTS symptoms have been worse. It's hard to stand up in one place for more than a minute. I have to lean on something or keep moving. It's exhausting to just stand still, and the blood pooling in my legs is more obvious. My feet turn purple. I've been more reactive to allergens again. Lots of sinus trouble with bloody noses this summer. My "fibromyalgia" has come back in waves. Muscle aches and cramps, tender skin, and pain with using muscles in slightly the wrong way. I have a ganglion cyst on my wrist under my thumb, and my thumb has hurt a lot. Can't squeeze anything without shooting stabbing pain. My finger and toe nails are peeling off the top layer again. My pupils are not the same size fairly often. I'm dizzy frequently. My energy level has been awfully low. My digestion is weak. I'm feeling low blood sugar before my stomach will accept food.
My husband keeps telling me I'm argumentative too. I sense he's getting frustrated with me. I'm trying. I really am. I just constantly feel like I'm at the end of my rope with energy for making decisions or tolerating changes. He's trying to get stuff done and accomplished and I just can't process it. When will I be able to handle it? I don't know. Probably in too much time to wait.
It feels like I've lost a lot of progress in my health.
I've been laying out on the back deck in the sun as much as possible. It's not been enough to warm up my freezing toes. The sun feels great, but it's not helping with the depression the way I was hoping.
Now I can't be outside easily. All the wildfires in the west are creating lots of smoke, and that smoke is heavy here now. We're in the red zone for air quality. The sky is just... gray.
I don't know what to do. It's hard to find motivation when all I want to do is lay in bed. But when I feel good enough I can log into my game and hang out with my guild mates and laugh and have a lot of fun. All from the comfort of bed. Great friends that don't require physical energy - it's a huge blessing. They don't need to know about my health issues. I can just be normal and myself with them. But as it turns out, many of them also have health issues - it seems many of us are attracted to the game for the same reasons.
Tuesday, December 26, 2017
December 2017 Doctor Vists and Tests Part 1
For a little over a year there has been this lingering question mark over my head asking if I have Postural Orthostatic Tachycardia Syndrome, or POTS for short, a form of Dysautonomia. I had a couple medical practitioners say that they suspected POTS. POTS is defined as your pulse going up at least 30 bpm when you stand up then sustaining a high pulse for a little while (but the length of sustaining is what confuses me.)
I got myself a pulse oxygen meter that clips onto my finger in order to see what happens to my pulse when I stand up. About half of the time my pulse does shoot up at least 30 bpm, often way more than that. Sometimes it stays that high for a minute or two, but normally what happens is my pulse shoots up, then goes down, then goes up again, then goes down again, then goes up again... it's a roller coaster. I took some videos of this happening and sent them to a Neurologist in New Hampshire who is an expert in Dysautonomia that my primary doctor referred me to. He took me on as a patient, which was a huge relief to me since he's very difficult to get into.
Why not see someone locally in North Dakota? Because POTS isn't well understood, and it takes a doctor with training in dysautonomia to be able to diagnose it. There isn't anyone in ND except for one pediatric doctor that diagnoses, and I'm not a child. There doesn't even appear to be a Tilt Table in ND. If I went through the local hospital for a referral they would have sent me to Mayo in Rochester, MN. It's an 8 hour drive from here, and very expensive. Too expensive compared to flying somewhere to see a highly rated dysautonomia specialist.
On the trip to NH I also scheduled a Tilt Table Test, a Echocardiogram, Lyme Disease testing, a visit with the Neurologist, and a visit with my primary doctor (my Naturopathic doctor.) It was a very full trip. In preparation for the visits I had to be off all my supplements for a few weeks prior. I posted a bit about that experience, but in short, I didn't do quite as badly as I expected without the supplements, but I did get worse. High adrenaline and crashing during the day, high adrenaline and interrupted poor sleep at night. My digestion became poor and my joints and muscles ached. I ended up gaining between 10-15 lbs (lots of fluctuation day-to-day.) My mood deteriorated rapidly, and my periods became irregular. My stress level was through the roof and I couldn't control it, even while relaxing.
On the first day of the trip I went to Elliot Cardiology in Manchester, NH. I started with the Tilt Table Test. I had to fast at least 4 hours before the test to make sure I didn't vomit during the test and end up choking on it. As someone who has to eat every 2 hours to stay strong enough to function, that was hard, and then the test took about an hour. After the test my blood sugar was 72, which was barely above hypoglycemic, so I was actually impressed with my body that it didn't get hypoglycemic after all that, but I was very shaky.
The test was... not really what I was expecting. I was strapped down to the bed. It took 3 nurses to find a vein in my arm to put an IV into - the IV was to raise my blood volume back up with saline in case my blood pressure dropped too low. They almost gave up on using my arms for the IV, but the last nurse they called in wasn't afraid to dig a little deeper and she managed to get the needle into my vein. They hooked me up to an EKG machine, and took my blood pressure. I was expecting that they would let me lay calmly for a while to get my body down to baseline, but next thing I knew, I was being tilted upright on the bed. I definitely was feeling nervous and high strung, definitely not at my baseline before they tilted me. I started to get upset because I didn't feel like they were doing the test right, but the tilting made me feel so weak that all I could do was focus on surviving the tilt. In that moment I understood why POTS patients say the TTT can be really painful and difficult to endure. During the tilt I felt this deep pressure moving downward in my body, my vision narrowed towards black, and I started crying. Tons of tears just poured out and they had to give me tissues. It was horrible - but a feeling I was familiar with. I've felt like that before when standing up too quickly, but this was the most extreme. I'm not a fainter, my body always fights the feelings like I'm about to faint. If I was a fainter, that's when I would have fainted and I would have passed that test criteria. I couldn't communicate well, Thoughts were not working well, so when the nurses asked how I was doing, I just got out the words "weak, I can't stop crying." But then I was standing there strapped to this bed at an 80º tilt. Within about 5 minutes I felt better. My body was recovering. I didn't understand what to do - I felt well supported by this bed, so my body wasn't working to stay upright. I had no idea if I was supposed to relax all my muscles and stop supporting myself or if I was to stay there, legs locked upright. I had waves of hot flashes, waves of weakness, but never fainted. One nurse told me, "You're not quite normal," and I never had a chance to ask her what the meant. After the test she had to run before I could question her.
After 30 minutes they laid me back down flat. This is the part that's as bad as the tilt itself. I was able to stand up, but was very weak and shaky. I was trembling. I talked to the nurses for about 30 seconds, then I tried to take a step. I couldn't. My leg muscles gave out and I had to fall back down on the bed. I was crying hard again, shaking almost violently, freezing cold, and felt so weak. The nurses argued a bit about if it was an anxiety attack, hypoglycemia, or adrenal issues. The one nurse was sure it was adrenal, but they're not allowed to diagnose. That's when they took my blood sugar and found I was borderline hypoglycemic. On this note, I was disappointed that they did not do the version of the TTT in which they infused adrenaline through an IV if I didn't faint, and then do blood labs to see how my adrenals react to the IV. This part of the test often makes people faint, and then they know the syncope is from adrenal issues. I know I have adrenal issues, so I wanted that part of the test done and didn't get it.
I couldn't walk on my own, so they put me in a wheelchair and delivered me to the echocardiogram room. I needed the echo to check on the status of my Pulmonary Stenosis, which I've had since birth and it never went away. It's still there. That's about all I learned from the test. I'm thinking of sending all my past echos to a cardiologist there and having them do some comparisons.
That was the end of the first day of testing. I was weak and low energy the rest of the day.
The next day I saw my Neurologist at Dartmouth-Hitchcock Medical Center. But let me back up a bit: I almost didn't a couple of times. I got a phone call from his office the day before our flight out there saying that he wanted to cancel my appointment because the Autonomic Nervous System testing equipment broke and he couldn't test me. I had to beg to keep the appointment, even just a consult, and they agreed because I was traveling. The day of, I had two major strikes against me going: I started my period that day (I have to roll my eyes at my body choosing the worst times), and the weather was horrific. 3 inches of snow in a few hours time, icy roads, and near whiteout conditions. An hour and 20 min drive took us 2 hours, and I ended up getting there 10 minutes late. 5 more minutes and he wouldn't have seen me. Or so the receptionist said, but the doctor was forgiving and spent a good amount of time with me. I didn't have time to go to the bathroom before seeing him, so I was cramping badly and was uncomfortable. My blood pressure was 120 something over 63 and my pulse was over 100, if I remember correctly, which showed just how stressed out I was about my bathroom needs, getting to see this doctor finally, and being so rushed in bad weather to get there.
He sat me down and let me talk - he had me tell him my history and all my symptoms. He gave me a good amount of time and really listened, which blew my mind. He was amazing. He took me seriously, didn't try brushing off anything I said. He even knew about the damage vitamin b6 toxicity can do and understood what I went through with my nerve pain. He had me to do some nerve conduction testing, which turned out normal. He also showed me the results of the TTT:
I went up over 30 bpm, the criteria for POTS. But it doesn't say if it was sustained. It could also be POTS symptoms caused by something else. So he needs more information.We decided that since he wasn't able to do the autonomic nervous system testing that he would have me wear a heart monitor for 14 days - a Zio XT Patch...
...Which meant not being able to go back on my supplements. My doctor and I agreed that we need to measure my heart without the medical aids to show how I am without support. Today marked 14 days, so I ripped the monitor off and took a hot shower and my supplements. The patch was itchy the whole time and it left me this pretty rash:
I'll tell the rest of the story in Part 2, as I have to go to work now. :)
Friday, December 22, 2017
Sugar = Depression
People don't want to talk about depression and suicide. I don't blame them. I always feel so powerless when my friends bring it up to me. I know trying to cheer them up will just push them away. I know that when I'm feeling depressed I'm too zoned out to even talk about it. It's such a tough issue.
I'm currently wearing a heart monitor, a Zio XT Patch. I have a lot to write about to explain what's going on it, but I don't have the energy right now. To make my point, I do need to explain that I'm relaxing a little (not a lot) on my strict diet because we want the heart monitor to record what I'm like without all the medical aids, including my diet.
This has meant I've let myself eat sugar. I bought the SO Delicious chocolate covered coconut milk ice cream bars because the only thing in them that's not allowed on my diet is sugar. They were a safe sugary option for me. They're super good! So I ate too many over the last week. Each time I eat one, I'm noticing what happens a few hours later: I get very depressed. Not sad. Just mentally everything goes black and the only emotion that comes through is a mild current of anger. The "everything is stupid" type of anger, like I'm a teenager again. It comes along with a headache. It's awful. I lose sight of myself in this blackness. Then eventually it turns into hunger and total weakness - probably low blood sugar. I'm saying this now because the feeling is starting again... because I ate the ice cream a few hours ago. It's hitting me.
I still get depressed without the sugar, but it's really blowing my mind that sugar has this profound of an effect on me. It has a direct correlation with serious depression episodes. I'm not entirely sure what to do to get out of it - the past several days this week with the sugar depression I just had to go to sleep and sleep it off. Of course sleep doesn't come easily. I'm not supposed to take any sleep aids either, but I've had to take some magnesium to calm the anxiety in my body from the sugar so it was possible to sleep. I'm afraid of how I'd be with both sugar and a lack of sleep.
I also ate a muffin made from flax and oats, no other grains. The oats alone were enough to know what happens to me when I eat grains: fibromyalgia flare. It hurt. My skin, especially my legs, got really tender to the touch. Waves of achiness went through my muscles. And I hate to say it, but it's true... taking the Eucharist has Mass has done the same thing to a much lesser degree. Grains are truly my enemy.
But why did I also mention suicide? Because I just binged on an anime on Crunchyroll called "Orange." If you're feeling depressed, go watch it. It's powerful. It's about a girl who sends a letter to her past self to coach her through her social anxiety issues in order to get her to save the life of a friend who will end up committing suicide. She has to overcome her own social fears to be strong for him, and he has to want her help - all the while he hides his deep depression from her. I won't spoil anything. It was really hard to watch, but also really inspiring and beautiful. It had a lot to say about the value of good communication skills.
Back to my heart monitor...
It hurts. All my doctor's supplements for me really have done a lot of good for me. I've been off of them for a month now, maybe longer? I'm not clear on the time frame at the moment. I've gained 10-15 pounds (the scale is different each day), I'm weak and totally drained, adrenaline takes over when I need to work and the adrenaline feels gross and dominating, I can't sleep well, my hair stopped growing much, bruises are taking weeks to heal, I'm dizzy really often, vertigo almost daily, my gut is screaming at me often, my heart is palpating and fluttering too often, I'm often panting for air, I'm dehydrated and can't seem to drink enough water... I'm going downhill fast. I'm so looking forward to going back on my supplements. They're a hassle to take. They're expensive. But they're all I've got that's working. I function so much better on them. Not perfectly well, not even close, but so much better.
I'll write about everything else later.
I'm currently wearing a heart monitor, a Zio XT Patch. I have a lot to write about to explain what's going on it, but I don't have the energy right now. To make my point, I do need to explain that I'm relaxing a little (not a lot) on my strict diet because we want the heart monitor to record what I'm like without all the medical aids, including my diet.
This has meant I've let myself eat sugar. I bought the SO Delicious chocolate covered coconut milk ice cream bars because the only thing in them that's not allowed on my diet is sugar. They were a safe sugary option for me. They're super good! So I ate too many over the last week. Each time I eat one, I'm noticing what happens a few hours later: I get very depressed. Not sad. Just mentally everything goes black and the only emotion that comes through is a mild current of anger. The "everything is stupid" type of anger, like I'm a teenager again. It comes along with a headache. It's awful. I lose sight of myself in this blackness. Then eventually it turns into hunger and total weakness - probably low blood sugar. I'm saying this now because the feeling is starting again... because I ate the ice cream a few hours ago. It's hitting me.
I still get depressed without the sugar, but it's really blowing my mind that sugar has this profound of an effect on me. It has a direct correlation with serious depression episodes. I'm not entirely sure what to do to get out of it - the past several days this week with the sugar depression I just had to go to sleep and sleep it off. Of course sleep doesn't come easily. I'm not supposed to take any sleep aids either, but I've had to take some magnesium to calm the anxiety in my body from the sugar so it was possible to sleep. I'm afraid of how I'd be with both sugar and a lack of sleep.
I also ate a muffin made from flax and oats, no other grains. The oats alone were enough to know what happens to me when I eat grains: fibromyalgia flare. It hurt. My skin, especially my legs, got really tender to the touch. Waves of achiness went through my muscles. And I hate to say it, but it's true... taking the Eucharist has Mass has done the same thing to a much lesser degree. Grains are truly my enemy.
But why did I also mention suicide? Because I just binged on an anime on Crunchyroll called "Orange." If you're feeling depressed, go watch it. It's powerful. It's about a girl who sends a letter to her past self to coach her through her social anxiety issues in order to get her to save the life of a friend who will end up committing suicide. She has to overcome her own social fears to be strong for him, and he has to want her help - all the while he hides his deep depression from her. I won't spoil anything. It was really hard to watch, but also really inspiring and beautiful. It had a lot to say about the value of good communication skills.
Back to my heart monitor...
It hurts. All my doctor's supplements for me really have done a lot of good for me. I've been off of them for a month now, maybe longer? I'm not clear on the time frame at the moment. I've gained 10-15 pounds (the scale is different each day), I'm weak and totally drained, adrenaline takes over when I need to work and the adrenaline feels gross and dominating, I can't sleep well, my hair stopped growing much, bruises are taking weeks to heal, I'm dizzy really often, vertigo almost daily, my gut is screaming at me often, my heart is palpating and fluttering too often, I'm often panting for air, I'm dehydrated and can't seem to drink enough water... I'm going downhill fast. I'm so looking forward to going back on my supplements. They're a hassle to take. They're expensive. But they're all I've got that's working. I function so much better on them. Not perfectly well, not even close, but so much better.
I'll write about everything else later.
Sunday, February 28, 2016
Toxic Consumerism: Is Voting With Your Dollars Enough?
I am gradually meeting more and more people in person who tell me they suffer reactions from certain synthetic products. I know of someone who only reacts to candles, even unlit candles, and it's enough to give her a migraine and agitation. A stranger told me she can't smell perfume without getting queasy, and she told me this without knowing I have sensitives too. Another man chose me to complain to about cigarette smoke making him feel awful. Someone else even showed me their rash and told me it started after using a cheap heavily scented laundry detergent. I'm happy to be meeting these people, because what it is telling me is that people who don't have MCS are experiencing reactions to many common synthetic products on the market - and they're complaining about it! They're fully aware of which products hurt them.
We are in need of a major cultural change. More and more consumers are choosing non-toxic products for several reasons: their own health, the health of the workers who made the products, fair trade/ ethics, avoiding worsening global warming, or even out of distrust for questionable ingredients in products. Non-toxic products are boasting that they're safer, more sustainable, create less waste, do not pollute our air, and they're more sturdy (better value)... all for only a slightly higher price tag. I see the tide turning, and there are more and more brands producing non-toxic options. The majority of consumers, however, are not conscientious shoppers. Most people are still going to buy cheap plastic disposables made in a sweat shop with child labor, not because they don't care, but because it's normal and most affordable.
Here is where I struggle. As a sales person who is very passionate about and deeply believes in everyone switching to non-toxic products, I have no problem educating customers to convince them to spend the extra money on something safer and more sustainable. I get very irritated when customers are educated and STILL choose to buy the toxic option - what will it take to convince them that they're not just hurting themselves with that choice, but they're hurting the people around them? When I'm not at work, I can quickly and easily become the annoying idealist who comes across as being very judgmental about other people's choices. I struggle with this, because I see it as a moral dilemma. I feel morally obligated to warn people against using toxic products, because I know from personal experience and from reading the scientific studies that and from meeting MANY other people who have been hurt those products hurt people. I fear for the health of my fellow human beings - am I wrong to try and protect others? Well, I can't control other people's choices, and I don't want to. I believe in free choice. I don't blame the consumers. I blame the terrible health regulations in this country and many other countries around the world.
The problem is that companies are allowed to use untested unregulated synthetic (not found in nature) chemicals in their products and then sell them to people who trust that these companies aren't allowed to produce products that hurt people. How do you convince consumers that these products aren't actually safe? They have to want to be convinced - they have to be open to making a change in their own life. Most people don't have the time or energy to research and learn about consumer product safety, if they even know it's an issue. Many consumers who have heard warnings against certain products might fall prey to marketing schemes that make them think they're making a safer, healthier purchase (when in reality that product is not safe.) This is a major issue with BPA-free plastic water bottles. The "BPA-free" sticker makes it sound like it's safe, but the problem is that the BPA alternative in plastic hasn't been proven safe. In fact, there's been studies to show that the alternative is just as endocrine disruptive as the BPA! No, consumers are not to blame.
One comment I see very often on Facebook is, "Vote with your dollars!" This means that consumers demonstrate what kind of culture, environment, and standards we want in our country based on what we choose to buy. There's plenty of truth in this statement. This sentiment is why there are more and more companies choosing to produce organic food products. For instance, Hormel saw the success of Applegate (natural and organic packaged meat brand) and choose to buy them. Hormel is seeing that a very large portion of consumers prefer organic and natural products, so they wanted in on the market.
I don't believe that the "Vote with your dollars!" plan is enough. It's tackling the issue from only one side, and the other side of the issue is a bigger problem. The other side of the issue is the total lack of safety regulations and standards for consumer products. Until that changes, too many consumers will keep buying the cheap, toxic products (knowing or unknowingly) - and these people are voting with their dollars too. As it is, more people are voting with their dollars that toxic products are acceptable. We need to fight for better safety regulations, demand third party testing on synthetic chemicals, and demand that companies stop using overseas child labor. We do this by voting, writing our senators and congressmen, and funding more research projects.
The Trans Pacific Partnership (TPP) is a great example of something that needs to be voted on. It's being discussed and voted on in many countries, but have you noticed that the media here in the USA is refusing to talk about it? The idea is that is allows faster, more direct trade between countries in order to boost the economy and create better trade relations with these other countries. The problems? It means LESS product safety regulation and fewer products being made in the USA (meaning less jobs too). In a time when China has been caught bleaching garlic that goes for sale in the USA, making fake rice from plastic and mixing it with real rice that gets sold in the USA, processing meat with carbon dioxide so it looks fresh when it's already rotten, and more... why in the world would anyone trust China to ship us more products through the TPP that are SAFE? If anything, it will allow them to get away with even more safety risks since there would be LESS oversight! To my knowledge, Mike Huckabee was the only presidential candidate that actively protested the TPP. He is no longer in the race. Hillary Clinton, on the other hand, is a major supporter of the TPP. This is NOT a democrat/ republican issue - this is a moral human issue.
I believe in Capitalism. I believe in the right to make any business you want that's legal. I believe in the right of consumers to have free choice on what products and services they buy. I used to believe that less government involvement allowed for a better Capitalistic system. Then I started to learn that people cannot be trusted to make decisions that do not hurt people. I learned that businesses would choose to use toxic products just to make a dollar. I learned that businesses would move overseas, avoiding hiring USA citizens, just to improve income. I learned that businesses don't mind being ethically and morally ambiguous by using child labor in sweat camps and paying them next to nothing. If business leaders could be trusted to have the health, safety, and welfare of humanity at heart, I would still prefer a smaller government with less regulations. But I lost my trust. The only way I can see to hold businesses accountable is through government regulations. ...But what happens when our government can't be trusted to regulate? That's our current problem. The last amendment to the chemical safety law in this country actually made the law worse - we now have FEWER protections. The government is no different from the business. Our leaders are supporting immoral, unethical, poor trade agreements with businesses so they make maximum profits. Let me be clear: I am NOT against corporations. They're not evil, in fact, I think they're a fantastic way to build a business economy. I support many corporations with my dollars, because I like their mission, values, and how they conduct business. This is a matter of trust.
(This is not an endorsement of Bernie Sanders either - yes, he's the only candidate talking about these issues, which I really truly appreciate and respect, but I don't believe in his solutions. I fully understand if you vote for him based on his environmental values.)
If I had the energy, I would love to get into much more detail and give specifics. My energy is running low very quickly.
My dream is for the USA to be thriving on a safe, sustainable, non-toxic, democratic, capitalistic economy. I would love to see the elimination of child labor, sweat camps, meat factories, poor subsidized farming techniques that rely on GMOs and synthetic toxic chemicals, etc. I'm dreaming WAY too big, I know. My idealism is too grand. But as someone with "21st Century Syndrome" who is "allergic" to our modern lifestyle... I think I have very legit reasons to be this idealistic and to dream. I can't participate in this culture without getting sick.
I'd like to acknowledge a business who is actually concerned with product safety and sustainability: Lego! Yes, the plastic toy company! I'm a huge fan of Legos, and it broke my heart when I realized they're made from toxic non-biodegradable petroleum plastic. Apparently, it's bothering them too. They've vowed to switch to a new kind of non-toxic sustainable plastic! Thanks Lego! Continue to be a great example for other businesses and for consumers!
If you would like to do further research on the issue of the toxic consumer products, I encourage you to check out:
- Stink! Documentary
- The Human Experiment
- Toxic Hot Seat
- The Sensitives
- Tox-Sick by Suzanne Somers
- 12,000 Canaries Can't be Wrong by Dr. John Molot
Next time you go shopping, keep in mind that plastic is endocrine-disruptive (estrogen mimicking, insulin producing, and other hormone suppressing), is linked to obesity and diabetes, is not biodegradable, and has much safer alternatives. Consider buying the glass water bottle instead, and pass on the meat wrapped in plastic in favor of paper-wrapped meat from you butcher. Your water and meat will also taste so much better if you do this!
http://www.niehs.nih.gov/health/topics/agents/endocrine/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702426/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279464/
http://www.nydailynews.com/life-style/health/chemicals-plastic-linked-health-problems-study-article-1.2285790
We are in need of a major cultural change. More and more consumers are choosing non-toxic products for several reasons: their own health, the health of the workers who made the products, fair trade/ ethics, avoiding worsening global warming, or even out of distrust for questionable ingredients in products. Non-toxic products are boasting that they're safer, more sustainable, create less waste, do not pollute our air, and they're more sturdy (better value)... all for only a slightly higher price tag. I see the tide turning, and there are more and more brands producing non-toxic options. The majority of consumers, however, are not conscientious shoppers. Most people are still going to buy cheap plastic disposables made in a sweat shop with child labor, not because they don't care, but because it's normal and most affordable.
Here is where I struggle. As a sales person who is very passionate about and deeply believes in everyone switching to non-toxic products, I have no problem educating customers to convince them to spend the extra money on something safer and more sustainable. I get very irritated when customers are educated and STILL choose to buy the toxic option - what will it take to convince them that they're not just hurting themselves with that choice, but they're hurting the people around them? When I'm not at work, I can quickly and easily become the annoying idealist who comes across as being very judgmental about other people's choices. I struggle with this, because I see it as a moral dilemma. I feel morally obligated to warn people against using toxic products, because I know from personal experience and from reading the scientific studies that and from meeting MANY other people who have been hurt those products hurt people. I fear for the health of my fellow human beings - am I wrong to try and protect others? Well, I can't control other people's choices, and I don't want to. I believe in free choice. I don't blame the consumers. I blame the terrible health regulations in this country and many other countries around the world.
The problem is that companies are allowed to use untested unregulated synthetic (not found in nature) chemicals in their products and then sell them to people who trust that these companies aren't allowed to produce products that hurt people. How do you convince consumers that these products aren't actually safe? They have to want to be convinced - they have to be open to making a change in their own life. Most people don't have the time or energy to research and learn about consumer product safety, if they even know it's an issue. Many consumers who have heard warnings against certain products might fall prey to marketing schemes that make them think they're making a safer, healthier purchase (when in reality that product is not safe.) This is a major issue with BPA-free plastic water bottles. The "BPA-free" sticker makes it sound like it's safe, but the problem is that the BPA alternative in plastic hasn't been proven safe. In fact, there's been studies to show that the alternative is just as endocrine disruptive as the BPA! No, consumers are not to blame.
One comment I see very often on Facebook is, "Vote with your dollars!" This means that consumers demonstrate what kind of culture, environment, and standards we want in our country based on what we choose to buy. There's plenty of truth in this statement. This sentiment is why there are more and more companies choosing to produce organic food products. For instance, Hormel saw the success of Applegate (natural and organic packaged meat brand) and choose to buy them. Hormel is seeing that a very large portion of consumers prefer organic and natural products, so they wanted in on the market.
I don't believe that the "Vote with your dollars!" plan is enough. It's tackling the issue from only one side, and the other side of the issue is a bigger problem. The other side of the issue is the total lack of safety regulations and standards for consumer products. Until that changes, too many consumers will keep buying the cheap, toxic products (knowing or unknowingly) - and these people are voting with their dollars too. As it is, more people are voting with their dollars that toxic products are acceptable. We need to fight for better safety regulations, demand third party testing on synthetic chemicals, and demand that companies stop using overseas child labor. We do this by voting, writing our senators and congressmen, and funding more research projects.
The Trans Pacific Partnership (TPP) is a great example of something that needs to be voted on. It's being discussed and voted on in many countries, but have you noticed that the media here in the USA is refusing to talk about it? The idea is that is allows faster, more direct trade between countries in order to boost the economy and create better trade relations with these other countries. The problems? It means LESS product safety regulation and fewer products being made in the USA (meaning less jobs too). In a time when China has been caught bleaching garlic that goes for sale in the USA, making fake rice from plastic and mixing it with real rice that gets sold in the USA, processing meat with carbon dioxide so it looks fresh when it's already rotten, and more... why in the world would anyone trust China to ship us more products through the TPP that are SAFE? If anything, it will allow them to get away with even more safety risks since there would be LESS oversight! To my knowledge, Mike Huckabee was the only presidential candidate that actively protested the TPP. He is no longer in the race. Hillary Clinton, on the other hand, is a major supporter of the TPP. This is NOT a democrat/ republican issue - this is a moral human issue.
I believe in Capitalism. I believe in the right to make any business you want that's legal. I believe in the right of consumers to have free choice on what products and services they buy. I used to believe that less government involvement allowed for a better Capitalistic system. Then I started to learn that people cannot be trusted to make decisions that do not hurt people. I learned that businesses would choose to use toxic products just to make a dollar. I learned that businesses would move overseas, avoiding hiring USA citizens, just to improve income. I learned that businesses don't mind being ethically and morally ambiguous by using child labor in sweat camps and paying them next to nothing. If business leaders could be trusted to have the health, safety, and welfare of humanity at heart, I would still prefer a smaller government with less regulations. But I lost my trust. The only way I can see to hold businesses accountable is through government regulations. ...But what happens when our government can't be trusted to regulate? That's our current problem. The last amendment to the chemical safety law in this country actually made the law worse - we now have FEWER protections. The government is no different from the business. Our leaders are supporting immoral, unethical, poor trade agreements with businesses so they make maximum profits. Let me be clear: I am NOT against corporations. They're not evil, in fact, I think they're a fantastic way to build a business economy. I support many corporations with my dollars, because I like their mission, values, and how they conduct business. This is a matter of trust.
(This is not an endorsement of Bernie Sanders either - yes, he's the only candidate talking about these issues, which I really truly appreciate and respect, but I don't believe in his solutions. I fully understand if you vote for him based on his environmental values.)
If I had the energy, I would love to get into much more detail and give specifics. My energy is running low very quickly.
My dream is for the USA to be thriving on a safe, sustainable, non-toxic, democratic, capitalistic economy. I would love to see the elimination of child labor, sweat camps, meat factories, poor subsidized farming techniques that rely on GMOs and synthetic toxic chemicals, etc. I'm dreaming WAY too big, I know. My idealism is too grand. But as someone with "21st Century Syndrome" who is "allergic" to our modern lifestyle... I think I have very legit reasons to be this idealistic and to dream. I can't participate in this culture without getting sick.
I'd like to acknowledge a business who is actually concerned with product safety and sustainability: Lego! Yes, the plastic toy company! I'm a huge fan of Legos, and it broke my heart when I realized they're made from toxic non-biodegradable petroleum plastic. Apparently, it's bothering them too. They've vowed to switch to a new kind of non-toxic sustainable plastic! Thanks Lego! Continue to be a great example for other businesses and for consumers!
If you would like to do further research on the issue of the toxic consumer products, I encourage you to check out:
- Stink! Documentary
- The Human Experiment
- Toxic Hot Seat
- The Sensitives
- Tox-Sick by Suzanne Somers
- 12,000 Canaries Can't be Wrong by Dr. John Molot
Next time you go shopping, keep in mind that plastic is endocrine-disruptive (estrogen mimicking, insulin producing, and other hormone suppressing), is linked to obesity and diabetes, is not biodegradable, and has much safer alternatives. Consider buying the glass water bottle instead, and pass on the meat wrapped in plastic in favor of paper-wrapped meat from you butcher. Your water and meat will also taste so much better if you do this!
http://www.niehs.nih.gov/health/topics/agents/endocrine/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702426/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279464/
http://www.nydailynews.com/life-style/health/chemicals-plastic-linked-health-problems-study-article-1.2285790
Friday, February 20, 2015
Positives and Improvements
There are a few topics I've been really wanting to write about, but simply haven't had the energy. It's really frustrating me. I want to write about endocrine disruption, do a product review on my far infrared sauna and a caulk product that didn't cause a reaction for me, write about how much removing plastics from my life helped me, and more. I have a lot to say and share, but it's so exhausting. I've been on the biggest roller coaster ride in the past couple of weeks, and it's been nearly debilitating at times. I might write more about this later, but because my health problems have been dominating my life, I want to focus on something different right now.
In the past year and a few months, what are the noticeable positive health improvements I've experienced? Keep in mind that I was in very bad shape - a total zombie who had no idea how I was going to survive all the pain, fatigue, and depression.
1. Substantially reduced pain!
"Fibromyaliga" no more! I used to feel pain all over from head to toe, in my stomach, and in my gut. I used to get flares that were nearly debilitating. When I'm in pain now, it's in very specific areas and it's usually tolerable. Pain now isn't overwhelming. It's actually indicative of something that's wrong. My pain tends to always flare on the qi median that goes to my liver and spleen.
2. No more bloody noses!
I used to get bloody noses all the time, and a doctor once told me I was a perfect candidate to get a surgery to thicken the skin in my nostrils to prevent bleeding. I never did the surgery. There were two instances where I had bloody noses so bad at work that it was impossible for me to work. The general manager at the grocery store I was working at when I was 18 actually took 45 minutes out of his day to sit with me and try to get my nose to stop bleeding. He watched as I spit out a blood clot a little larger than a golf ball, which was just gross and embarrassing. He even paid me for the time I spent fighting that nose bleed - he was such an amazing boss. In the other instance, I was the secretary at a mental health clinic. Both nostrils were dripping blood and I was really struggling to breathe. My boss, the clinic's head psychologist, took me into the bathroom, had me sit so the blood would drain into the toilet, and he pinched my nose and put an ice pack on my forehead. He held that position for at least 10 minutes with me, meanwhile he chatted with a patient on the phone (lol!!) Once it stopped bleeding he said, "Don't worry about how you look. Just go meet my new patient who I sent to your office." Haha!
I don't think I've had a bloody nose in close to 6 months now, but they've at least become rare within the last year. I was getting them occasionally before our bathroom got renovated last year (our skylight was leaking and we had a mold problem because of it.) Mold has always given me bloody noses.
3. My menstrual issues are actually manageable now!
This is a really super big deal to me. My life used to be 100% controlled by my periods because the pain was so intense and I was so overly heavy that I couldn't help myself on those days. I had to plan my entire life around when my period was due. I used to lay in bed screaming in pain, even after 12 ibuprofen. I used to lose about 7-8 ounces of blood a day (the average healthy woman loses 1-2 ounces during her whole cycle.) So not only was I in extreme pain, but I had to manage the mess somehow. It left me totally exhausted and I always had to recover.
My period still causes problems, but they feel like easy problems now. I'm losing about 5 ounces of blood during my whole cycle now, which is still considered heavy, but it's way less than it used to be. I can get painful cramps the week before, but my periods themselves are hardly painful at all now. They still knock me out, turning me into a total zombie the day before and the first day of, but I just sleep those days off and I'm okay. This is a true miracle for me.
4. I have some days with energy now!
I still have plenty of days where I'm tired all day long, but for the most part, I'm no longer regularly so exhausted that it's hard to function. Even on days when I'm tired I have enough energy to get some stuff done. I occasionally have days when I have a good amount of energy and I feel somewhat normal. Today, for instance, I've been oddly energetic. I've worked out, did the dishes, did two loads of laundry, chatted on the phone and laughed for a while, played my video game, am writing this post, and started bone broth in the crock pot. I feel a little spent, but I'm not exhausted. It has felt good!
5. I've learned how to cook a variety of meals with my limited diet!
My strict diet has made my life so much easier. I have a list of foods I'm allowed to eat, and I've learned the best and worst times to eat specific foods. Food makes me feel good now (usually - there have been cases where eating anything at all has cause pain and problems,) whereas food used to be very hit-and-miss for me. Before this diet, food would either hurt me or help me, and most of the time it was hurting me. Food never hurts me now, but sometimes it aggravates digestive problems. Food is wayyyyy easier and better these days!
6. Mental clarity, creativity, critical thinking skills, and good moods have returned!
Oh, I've definitely had my set backs in this area. I'm still getting days where I can't think straight. I'm still getting days where I have no mental energy to work with, and I find myself at a loss for words when trying to communicate. Most days have been good for me in this area lately. I'm not struggling to read books anymore. I'm really enjoying researching (which obviously takes lots of mental energy.) I'm able to have fun conversations with friends. I've been able to draw, work on my Zazzle shop, and write (all creative things.) I may not have my body working well, but at least I have my mind back on most days. As long as my mind is functioning well I will never complain. The loss of a functioning mind was the most grievous experience for me last year. I felt completely worthless and I hated my life.
7. Chemical sensitivities are a blessing just as much as a curse!
Any readers with MCS might be really confused by this. How could MCS, a condition making it nearly impossible to spend time in public without getting really sick, be a blessing in any way? Well, first of all, understanding my body and why it reacts is a major blessing. I know what's going on now, so I know how to avoid triggers that cause reactions that make me miserable. Second, MCS is helping me stay healthy. Because I cannot get away with putting myself in toxic situations, I don't. I can be reaction-free for days to weeks now because I've learned what to avoid. It's amazing. The problem is when I'm unable to avoid something toxic - such as getting on an airplane. There is nothing good about that bad unavoidable situation that will make me sick.
8. I've made some great friends!
Naturally, I've gravitated towards finding support groups online. I've met many people online who are very much like me with poor health. We commiserate together, help each other, laugh together, and see life from the same perspective together. It's wonderful. (But then I get really sad, because sometimes their situations are so bad that they talk about suicide, and it brings me down because I can't deal with that kind of stress, but I feel compelled to get involved because I've felt like them before and suicide is the worst possible thing.) For the most part, these groups have been very very helpful. At the very least, they help me feel less isolated. I don't feel unique or crazy. They provide me with an outlet to talk about my issues, because I know my husband can't stand hearing about my bad health all the time.
9. More stability
Overall I'm more stable than I was a year ago. My blood sugar issues are less drastic, my blood pressure is more stable, my mental state is more stable (and my anxiety is a lot less extreme,) my appetitate is regular, and my moods are not as wild. Yes, I still have stability problems in all regards, but I'm much more stable than I was. If I used to be an 8.0 earthquake daily, I'm now a 4.5 earthquake daily.
10. I look so much better!
I've lost over 30 lbs, I look a few years younger, I have way less acne, my skin glows when I'm feeling well (it's often pale with poor circulation,) my hair is way stronger and naturally shiny, my nails no longer split and crack and they grow quickly, and I'm not embarrassed to present myself anymore. I still have bags under my eyes, get rashes, fight some occasional acne, have slightly yellowing skin (been wondering about mild jaundice for a while,) and can look totally exhausted. I also still fight major bloating issues (I can look pregnant at times.) For the most part, I feel thin and beautiful, and I'm proud of it. Make-up feels a lot more optional to me now, lol.
I'm sure I'm missing some positives, but is what I thought of without really trying. :)
In the past year and a few months, what are the noticeable positive health improvements I've experienced? Keep in mind that I was in very bad shape - a total zombie who had no idea how I was going to survive all the pain, fatigue, and depression.
1. Substantially reduced pain!
"Fibromyaliga" no more! I used to feel pain all over from head to toe, in my stomach, and in my gut. I used to get flares that were nearly debilitating. When I'm in pain now, it's in very specific areas and it's usually tolerable. Pain now isn't overwhelming. It's actually indicative of something that's wrong. My pain tends to always flare on the qi median that goes to my liver and spleen.
2. No more bloody noses!
I used to get bloody noses all the time, and a doctor once told me I was a perfect candidate to get a surgery to thicken the skin in my nostrils to prevent bleeding. I never did the surgery. There were two instances where I had bloody noses so bad at work that it was impossible for me to work. The general manager at the grocery store I was working at when I was 18 actually took 45 minutes out of his day to sit with me and try to get my nose to stop bleeding. He watched as I spit out a blood clot a little larger than a golf ball, which was just gross and embarrassing. He even paid me for the time I spent fighting that nose bleed - he was such an amazing boss. In the other instance, I was the secretary at a mental health clinic. Both nostrils were dripping blood and I was really struggling to breathe. My boss, the clinic's head psychologist, took me into the bathroom, had me sit so the blood would drain into the toilet, and he pinched my nose and put an ice pack on my forehead. He held that position for at least 10 minutes with me, meanwhile he chatted with a patient on the phone (lol!!) Once it stopped bleeding he said, "Don't worry about how you look. Just go meet my new patient who I sent to your office." Haha!
I don't think I've had a bloody nose in close to 6 months now, but they've at least become rare within the last year. I was getting them occasionally before our bathroom got renovated last year (our skylight was leaking and we had a mold problem because of it.) Mold has always given me bloody noses.
3. My menstrual issues are actually manageable now!
This is a really super big deal to me. My life used to be 100% controlled by my periods because the pain was so intense and I was so overly heavy that I couldn't help myself on those days. I had to plan my entire life around when my period was due. I used to lay in bed screaming in pain, even after 12 ibuprofen. I used to lose about 7-8 ounces of blood a day (the average healthy woman loses 1-2 ounces during her whole cycle.) So not only was I in extreme pain, but I had to manage the mess somehow. It left me totally exhausted and I always had to recover.
My period still causes problems, but they feel like easy problems now. I'm losing about 5 ounces of blood during my whole cycle now, which is still considered heavy, but it's way less than it used to be. I can get painful cramps the week before, but my periods themselves are hardly painful at all now. They still knock me out, turning me into a total zombie the day before and the first day of, but I just sleep those days off and I'm okay. This is a true miracle for me.
4. I have some days with energy now!
I still have plenty of days where I'm tired all day long, but for the most part, I'm no longer regularly so exhausted that it's hard to function. Even on days when I'm tired I have enough energy to get some stuff done. I occasionally have days when I have a good amount of energy and I feel somewhat normal. Today, for instance, I've been oddly energetic. I've worked out, did the dishes, did two loads of laundry, chatted on the phone and laughed for a while, played my video game, am writing this post, and started bone broth in the crock pot. I feel a little spent, but I'm not exhausted. It has felt good!
5. I've learned how to cook a variety of meals with my limited diet!
My strict diet has made my life so much easier. I have a list of foods I'm allowed to eat, and I've learned the best and worst times to eat specific foods. Food makes me feel good now (usually - there have been cases where eating anything at all has cause pain and problems,) whereas food used to be very hit-and-miss for me. Before this diet, food would either hurt me or help me, and most of the time it was hurting me. Food never hurts me now, but sometimes it aggravates digestive problems. Food is wayyyyy easier and better these days!
6. Mental clarity, creativity, critical thinking skills, and good moods have returned!
Oh, I've definitely had my set backs in this area. I'm still getting days where I can't think straight. I'm still getting days where I have no mental energy to work with, and I find myself at a loss for words when trying to communicate. Most days have been good for me in this area lately. I'm not struggling to read books anymore. I'm really enjoying researching (which obviously takes lots of mental energy.) I'm able to have fun conversations with friends. I've been able to draw, work on my Zazzle shop, and write (all creative things.) I may not have my body working well, but at least I have my mind back on most days. As long as my mind is functioning well I will never complain. The loss of a functioning mind was the most grievous experience for me last year. I felt completely worthless and I hated my life.
7. Chemical sensitivities are a blessing just as much as a curse!
Any readers with MCS might be really confused by this. How could MCS, a condition making it nearly impossible to spend time in public without getting really sick, be a blessing in any way? Well, first of all, understanding my body and why it reacts is a major blessing. I know what's going on now, so I know how to avoid triggers that cause reactions that make me miserable. Second, MCS is helping me stay healthy. Because I cannot get away with putting myself in toxic situations, I don't. I can be reaction-free for days to weeks now because I've learned what to avoid. It's amazing. The problem is when I'm unable to avoid something toxic - such as getting on an airplane. There is nothing good about that bad unavoidable situation that will make me sick.
8. I've made some great friends!
Naturally, I've gravitated towards finding support groups online. I've met many people online who are very much like me with poor health. We commiserate together, help each other, laugh together, and see life from the same perspective together. It's wonderful. (But then I get really sad, because sometimes their situations are so bad that they talk about suicide, and it brings me down because I can't deal with that kind of stress, but I feel compelled to get involved because I've felt like them before and suicide is the worst possible thing.) For the most part, these groups have been very very helpful. At the very least, they help me feel less isolated. I don't feel unique or crazy. They provide me with an outlet to talk about my issues, because I know my husband can't stand hearing about my bad health all the time.
9. More stability
Overall I'm more stable than I was a year ago. My blood sugar issues are less drastic, my blood pressure is more stable, my mental state is more stable (and my anxiety is a lot less extreme,) my appetitate is regular, and my moods are not as wild. Yes, I still have stability problems in all regards, but I'm much more stable than I was. If I used to be an 8.0 earthquake daily, I'm now a 4.5 earthquake daily.
10. I look so much better!
I've lost over 30 lbs, I look a few years younger, I have way less acne, my skin glows when I'm feeling well (it's often pale with poor circulation,) my hair is way stronger and naturally shiny, my nails no longer split and crack and they grow quickly, and I'm not embarrassed to present myself anymore. I still have bags under my eyes, get rashes, fight some occasional acne, have slightly yellowing skin (been wondering about mild jaundice for a while,) and can look totally exhausted. I also still fight major bloating issues (I can look pregnant at times.) For the most part, I feel thin and beautiful, and I'm proud of it. Make-up feels a lot more optional to me now, lol.
I'm sure I'm missing some positives, but is what I thought of without really trying. :)
Subscribe to:
Posts (Atom)