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.

Sleep Study

Last night I went to the hospital and stayed the night for sleep study. It's been years coming, and I finally went through with it. I recorded a video for this blog. I was too tired to type about it. I look horrible - because I haven't been sleeping! This isn't a beauty contest. I'll look beautiful in other photos. Ha!



Some highlights:

- I didn't sleep much.

That pretty much sums it up!

Okay, but in all seriousness:

Sleeping pills didn't help. Being totally exhausted from several nights in a row of losing sleep over hives didn't help. I didn't sleep for the first 3 hours. I couldn't get comfortable. My rash on my ankle woke me up when I was finally sleepy. There was too much light and too much noise. I felt alert the whole night, like I was waiting for the next instruction. I feel like that at home regularly though. I don't ever want to have to do this again, as that was not at all fun trying to sleep and failing at it for hours.



This rash drove me nuts! I was worried I might get told I have to reschedule because of my hives. I was given the option. But the itching has gone down so much that I decided to just go for it. Except for this rash. I think it got worse during the study. I am sure I would have slept maybe 30 minutes more if this didn't bother me so much at 4:30 am.



I won't get my results for 1 to 2 weeks, so I can't tell you. What I can tell you is that my Oura Ring gave me a low sleep score, showing my heart rate never lowered below 80 during the study. (The Oura Ring is not good at determining if I'm actually sleeping or not. It thinks laying in bed with my eyes closed means I'm sleeping. It cannot detect if I'm awake when I'm laying still, so these results are not the reality of how long I slept. It also only shows me as awake when I physically move, not open my eyes. I opened my eyes and remained still a lot during the study.)


















I was worried about being reactive, and I was. I have rashes where the wire pads and glue were. They're not awful - not as bad as my hives have been. But my skin is not a fan of this stuff.



Getting that glue out of my hair was not nearly as challenging as I was told it would be. The lab tech advised me to use conditioner in my hair first, then use hot water to shampoo it all out. That might work, but I didn't try it. I soaked in a bath that was as hot as I could tolerate. I filled it with baking soda and epsom salts. It took about 15 seconds of soaking my hair in this bath water for the glue to come out. No problem! But after I scrubbed all the glue residue off I had to drain the bathwater so I wasn't soaking in it.


I'm pretty sure my hair is thinning out. Sigh.


I don't really know what the sleep study is going to show. I'll find out in a week or two!

3 Days of Rashes

Rashes! For 3 days! I'm puffy, swollen, have hives, have rashes, and I'm positively miserable. I'm very fatigued and feel almost no emotional capacity.

No, I don't know what is causing this, but there are possibilities. I'm going emotionally numb after all the heartache I've been through. (Someone tried to commit suicide again last night, and I'm just... I have nothing left to process it with.) I also started my period 4 days early, in contrast to being over a week late the last few months. It was much more painful than it has been and came with other bathroom issues. My diet hasn't been bad, but I've been eating less protein than I should in favor of more easy nuts and seeds to snack on. It's possible I can't tolerate that much. The weather is also making drastic sudden changes a lot, and I tend to flare during sudden changes like this. I'm also still on my doctor's mold protocol and maybe it just took a month to push out this much through my skin. I took a sauna when I was little too weak to handle it. My sleep has been... really bad. And then last night I was able to sleep solid like a rock because my period started. There's a lot of possibilities.

Anyway, I'm miserable. I feel like my hormones all dumped out of my body and I don't have any left to be human with. I'm in pain and itchy. I feel way too weak when standing up, occasionally out of breath and sweating just from standing. POTS is in full swing right now, and I'm vibrating even just sitting or laying down. I'm so over this.

Forgive me for not writing more informative posts like I used to. I'm just dealing with this. It's all I can do.

The Mushy Mush

I'm pure mush. Scattered unfocused thoughts, body feels and moves like jelly, highly creative dream like state with zero energy or care to apply it to anything, and a stagnated digestive system that doesn't know what it wants. I keep trying to find something to do with myself today, but after about 30 seconds of anything I turn into sludge and feel sleepy. This is PMS - it's more than just mood issues, pain, nerve issues, cravings, and acne.

I don't really like watching much TV alone because it's not interactive enough for me and I get restless, even when I'm overcome with fatigue. I like certain shows or movies when I'm watching with my husband or friends, but it's never a first choice when I'm alone. But watching Carmen Sandiego (new Netflix series) has been the only thing I've been able to enjoy today.

I don't really feel like talking to people, playing my game, sleeping, cleaning, cuddling with my pet birds, reading, working on my Spanish skills with Duolingo, sewing, drawing, listening to music... I'm just existing and being useless.

If I was forced to overcome this and go to work at a job how would I do? Well, it would require caffeine, licorice root, more adrenal complex, eating properly, and a whole lot of motivation. There's no way I'd perform well and I'd just prevent recovery by pushing myself. I'm overspent from pushing myself too hard yesterday to perform well at work. There is a point where my body will simply refuse to function well despite what I take to help it. I'd end up spacing out, forgetting things, stuttering and slurring my speech, dropping things, and finding myself unable to find mental energy problem solve.

Mush. Just pure mushy mush with stabbing pain thrown in here and here, even though occasional nerve ache in my leg.

Processing Depression Caused by Events

It's so easy to feel defeated. I've had a rough couple of weeks, and these experiences have led me to feel really depressed.

I have had several friends with severe medical emergencies and I had reason to worry for their lives. All at the same time. If one of these friends of mine does not survive it will be the second friend I will have lost to cancer. Another friend has been so sick that she became suicidal, and at times resistant to help. Of course I fought hard to help her fight for her life, but deep inside I couldn't help but wonder if I could fight if I was in her situation. Another friend ended up on life support after a car accident - that has been devastating. I also know 2 people who have had heart attacks recently. It's... overwhelming, to say the least.

And so, I decided to watch "Call Me Francis" / "Llamame Francisco" this week. I needed a true story about hardship to help me gain perspective. I also genuinely wanted to learn more about Pope Francis and Argentina. The mini-series does not educate or explain anything. It assumes you understand Argentine history fully. I had to talk to an Argentine friend of mine and do a lot of reading on my own to understand the circumstances in the story. Hours of research for 4 hours of show, but it was very enlightening. Learning about the Argentine 70's crisis with the military coup and the dictatorship was very interesting, but I don't know if I was in the right state of mind to learn about it objectively. Between the show and my research, I couldn't help but cry a lot over the kidnapping of pregnant mothers and the illegal adoption of their children. I cried when they showed the military throwing family members out of planes. Watching a story about how Padre Jorge (Pope Francis now) was actively involved in negotiating how the church helped these people was very enlightening. In the end, I learned that Argentina, while not recovered from these horrible events in the 70's, loves its people. They struggle with a terrible economy and a very high poverty rate right now, but they take care of themselves as best they can, because they actually care about offering the best quality of life that they can to their people. But I cannot help but feel shaken from learning about their recent atrocities. (No, don't tell me about other atrocities in world history to go learn about, I don't have the heart for it right now.)

I'm finding it is actually really difficult for me to read or learn about great people that live their lives well and accomplish a lot with their lives. Of course I'm extremely grateful to Pope Francis and admire him very much. (Don't let that statement get religious political - I don't care about your arguments about his church leadership right now. I'm referring to how he navigated the dire circumstances he lived through.)

But as I learn about these people I keep asking myself why I haven't figured out how to do great things with my life. Why are my years being wasted on nursing my health and entertaining myself in the process? Why are my talents and skills not getting developed so I can use them to help people in the world? A major reason is my chronic fatigue, but another major reason is my personality. I've never wanted to dedicate much time to developing skills beyond what was helpful enough to me to get tasks done, when it always felt more important to me to dedicate time to understanding people and morality. I'm one of those people who sits back and observes and reflects for years too long, and by the time I am ready to act, I find the next passion to ponder on for years too long. What do I do with all these thoughts? But how long have I really had this chronic fatigue? I might not have recognized it when I was younger because I was used to being that way, plus I'm introverted. When it caused me to be totally bedridden then I took notice. If not for the chronic fatigue, would I have done more action in my life to be more accomplished?

I'm feeling insecure. I feel like I should be doing great things despite my disability. I want to leave my mark on the world. But sometimes I can't see beyond my friends who are suffering so much. Sometimes I can't see beyond how terrible people have been throughout human history, and those who did great things for humanity make me feel like I'm not contributing to making the world better the way I should be. What is my purpose? I can't wait until I heal - what if I never do? What can I do in my current condition that won't overtax me and make me worse? I'm finding that what I am doing is overtaxing me and making me worse: I'm caring too much for people. I invest my energies into being their friends. It's not their fault, there is nothing to blame. It's just who I am. I just care. Too much. But if I make myself go numb to help me emotionally then I'll lose all sight of my purpose in life.

The USA's healthcare is a nearly complete failure for most of those with chronic illnesses. It leads people to suicide. It's way too expensive, doctors are too overworked and can't dedicate time to patients, doctors that are not trained in the illnesses try to poorly treat or dismiss us... it's a nightmare. And I'm one of those depressed chronically ill people who is feeling lost in the system. I am way better off than many people - so many people are substantially way worse than me. My disability is in the middle of the severity spectrum - I'm moderate. It significantly impacts my life, but hasn't completely stopped it. Too many people live in the severe category, in which their disability has completely prevented them from doing anything more than just staying alive minute by minute. I have the same struggles with the system, but it's not as dire for me. So trying to convince suicidal friends to use this system, because it's the only system there is, feels like I'm encouraging them to not get properly cared for so they can feel even more hopeless. It's a nightmare.

And so I have to keep reminding myself that saving the world is not my responsibility. I can't let world problems crush my spirit. At best, I need to keep my focus on my friends that I can do something for, even if it's just moral support. Being their friends, even though these major health issues, has helped me as much I hope I help them. Is it a waste of my energy? I don't think so. I might be full of grief and feeling depressed, but my heart is full of love because of them. I would feel depressed if I didn't have friends, or had friends who were healthy and so we can't relate to each other.

Grocery Shopping

Grocery shopping.

First a history lesson.

I live in a city where the natural and organic food options went from slim options to moderate options over the course of a few years. At first we had to go to one of two grocery stores for organic foods. One only had a few vegetables and some organic shelf-stable options were mixed in with all the other non-organic food. The other store has its own Natural Foods section, which has always been a decent little corner in the store, and had more organic produce options than the other store. Or you could go to Walmart, which had a lawsuit several years ago about putting organic labels on conventional produce to make a higher profit. I have major trust issues with Walmart. Basically, we had slim pickings. The produce was rarely ever fresh. It had to be shipping in from so far away. The only way to get fresh produce was to go to farmers markets. The type of produce sold there was limited, and there were only a couple of vendors. I also have a super rough time with mornings, and that's when they're happening.

Then a few years ago our city opened a Community Food Co-op. Finally! A place to get local organic/ non-sprayed produce with greater options for other organic groceries! They also offered locally sourced grass fed beef and lamb that never ate grains! It was a miracle! I was really excited about this. The problem is that this co-op has had a really rocky few years since opening. The meat department started out fantastic. They had a choice of local cuts, they made their own smoked meats, made their own sausages, and kept a variety. They slowly stopped carrying any fresh (non-frozen) local meat. That deteriorated into no fresh non-packaged meat. Now their meat cooler only has prepackaged options from regional brands, and then a freezer with local beef, pork, and lamb. They have always carried Smart Chicken, which I like, but they used to carry local whole chickens. I haven't seen those in years. Their produce section didn't have it quite as rough as the meat department, but there were some rough patches. Overall they have still had the best selection of fresh organic foods in town, and most of the time I'm happy with my produce from them. Local means fresh! But not always - not when people don't buy it fast enough and it sits there too long. It's not their fault.

I work a health products store (Terry's Health Products) that sells frozen and shelf-stable foods. We have made a strong effort to make our food section good, and I can get a lot of my regular staples there. We don't carry any fresh foods, but there's plenty else we carry. I'm not being biased by saying that the store I work at has been a saving grace for my city for many many years. It has always filled in gaps in the local market, thankfully! If you live near me then I strongly encourage you to consider us as part of your grocery shopping stops, because we have things no one else in town has.

So then Natural Grocers decided to come to town. They just opened last month. I can't tell you how many people were really excited that they were coming - acting like it was an answer to all the grocery problems in this city. Having shopped there when I lived in Boise, I knew what to expect, and the store turned out to be exactly what I expected. It's probably a miracle store for some types of shoppers. But I am not the kind of shopper the store is targeted to. Their produce is not local, and has the same problem as the other stores: it's not as fresh as I want because of the shipping time. Their produce section also focuses heavily on fruits and potatoes... starches and sugars, just like what most shelf-stable foods focus on. The typical American diet. They do not have a meat department, just some pre-packaged options that they have been mostly or entirely sold out of the 3 times I've been there. The one thing they carry that I can't get anywhere else in town is organic turkey deli meat without any sugar, carrageenan, starches, flavors, or other additives. It's just turkey and salt. Unlike Applegate, who just cannot seem to ever get it right (potato starch - seriously!?) I was hoping that their frozen vegetable selection would offer some variety. Nope, not really. It's just more of what every other store carries, plus some frozen mushrooms and okra (I can't have either.) So... do I really have much reason to shop there except to stock up on deli meat? An entire natural foods store, and as an organic health foodie I can't find much there that fits my standards. This is a normal problem for me.

Now that you have my history lesson, I want to explain how I shop. I get asked this often, so I'll enlighten you.

I do not eat any sugars, starches, dairy, grains, fruits, nightshades, pork, most fish, sulfurous foods, carrageenan, enriched foods, artificial ingredients, or anything with added vitamins. I also avoid most non-sugar sweeteners and natural and artificial flavors. This is not about preference, it's about my health. I don't have much choice - my body will make that clear if I try and cheat.

I eat pasture raised organic meats, certain vegetables, certain nuts and seeds, and certain oils. That's it.

Basically, I don't eat 95% of what is offered in any grocery store. Just because it's organic and "clean" doesn't mean it's good for me, but these stores like Whole Foods, Natural Grocers, Kroger, and Trader Joe's and the like will try to make you think it is good for you. There are a lot of people out there who just care that their food is natural and organic, and they'll still buy the typical cereals, sauces, pastas, energy bars... you know, the same foods they would buy at Walmart, just the organic version. If that's the type of shopper you are then these stores are perfect for you! That is not the type of shopper I am. Anymore. I used to be that type of shopper, and I was like a kid in a candy store in these types of stores. But my health doesn't allow me to eat any organic food I want to (that I'm not allergic to) anymore. 

What these stores don't do very well is cater to people like me, who are on restricted diets. There is some effort to cater to the Keto and Paleo diets, but I haven't been impressed with most of those efforts. Paleo granola still has bananas, honey, or maple syrup. How is that Paleo? Why is it a fundamental requirement that all pre-packaged foods have a sweetener in them? Where are the Paleo granolas without starchy nuts (cashews) and without sweeteners added? I can find Keto friendly breads without the grains and sugars, but then they're full of tapioca starch. Ummm... that's not Keto. Sorry, nice try, but starches will pull you out of ketosis. Especially when people eat those Keto-friendly processed foods on a regular basis. If you're not trying to stay in Ketosis and you can tolerate some starches then these breads are AMAZING. Seriously. They're very good. But they do not work for me... can you tell I tried? My gut told me to stop eating them. My actual gut, not my intuition.

So.

My main food is meat. I need to eat protein every two hours. I need a lot of protein to be stable. I order a quarter cow at a time directly from a local farm. It's certified organic and grass-fed, and they never eat grains (except some of their cows will be fed organic oats in the winter.) I pay around $800-1,000 for my quarter cow, and I buy a quarter 2-3 times a year. I have to buy my free-range chicken and lamb from the local co-op, and I probably buy $25 of chicken per week from them. You might think this is crazy expensive! Keep in mind that I'm not spending my money on other groceries - I put my budget into these quality meats and don't buy tons of other foods.

My second main food are vegetables. Non-starchy, non-nightshade, non-sulfurous vegetables. My options are fairly limited, but cheating and eating other veggies hurts. A lot. Sorry, broccoli is not good for me at all, which royally sucks because it's delicious and has great texture. Because I'm so restricted, I can't sign up for a program through one of the local organic farms where they send me a box a week. I'll get too many vegetables I can't eat, but I love those programs for other people so much. I can't get to the farmer's markets due to the times they are at, sadly. But this is where the local food co-op is a huge blessing for me. They have fresh local organic produce. They don't have every thing I want, but I am happy with what they do have. I stop there on the way home from work (it's on the way) and load up on veggies and Smart Chicken and lamb a couple times per week.

The store I work at has the nuts and seeds I can eat. Sprouted pumpkin seeds, sprouted sunflower seeds, pine nuts, and occasional sprouted almonds. All organic. I also get my jerky, vinegar, coconut aminos, coconut wraps, paleo avocado oil mayo without yolks (sulfur in the yolks), frozen veggies, collagen creamer for my tea, tea, and my spices there. I probably spend a lot of my paycheck on groceries there, ha!

Now I'm adding in Natural Grocers as a 3rd store, but really just for my deli meat. I went there today and wandered around a lot, not seeing anything else for me. That doesn't make them a bad store. They're just not catering to me.

I also shop on Vitacost.com as needed. They used to carry a lot that I couldn't find in town, but this year I've been able to find more of what I need in town. Sometimes it's way cheaper to buy from them and I'll choose them anyway.



Is the issue here me, or is it an issue with the industry? Both.

There are brands doing it right. I love those brands, I support them, and I encourage others to eat them. There are brands that are doing it right who I recommend, even though I can't eat their products due to certain ingredients.

But there are a lot of brands who just want their food to be the best tasting option. They don't care if that means they have to add sugar and starches. They don't care if that means they have to use a less healthy oil or cooking method. The ingredients might be organic, but that doesn't mean it's healthy or of the highest quality. Foods like this make up most of the industry. If you're like my husband, then this is a very good thing. He wants to only eat delicious foods and just prefers that they're organic. He loves the convenience of a can of hearty soup full of cream and potatoes and with lots of thickeners. :) I cannot be like my husband, even if I want to be, because I'll get sick eating that way. I'm far from the only one with my types of restrictions too. There should be a much bigger market for people like me.

I would probably eat a lot more packaged foods if only they followed my rules. Broth in glass without nightshades, yeast, or sugar. Paleo crackers without starches or too much vinegar (vinegar is sulfurous). Jerky without nightshades. Olives in glass without red wine vinegar. Frozen mixed vegetables without corn or nightshades and preferably in waxed paper packaging . Sunflower seed butter without sugar and with salt (I need the salt!) Paleo bread without egg yolks and starches, and maybe using a mix of nut flours beyond just almond flour (I can tolerate some, just not often.) Paleo protein powder bars without erythritol and cashews (I'm looking at you, Bulletproof - get rid of those cashews please!) You get the idea. There are a lot of products that are almost right for me.

Maybe now you understand why I don't get too excited about the organic industry. I love that the industry exists and I'm passionate about food. This industry is very very important. But I don't trust it. I find companies within the industry that are trustworthy and I stick with them. Most organic brands don't make anything for me. I am extremely judgemental and critical of foods, but I think that protects me and is a healthy thing.

But as you can see, I'm able to eat well. I'm able to find what I need. I'm able to not settle for less than what is right for me. I just had to have the determination to figure out how to shop and the willpower to stick to it. It's been working for me!

Music Discovery: London Grammar

Oi vey... I've been struggling to manage all the changes in life. My mental endurance is low. I have been wanting to share, but by the time I get to my computer I'm just too drained. I'm too drained to want to express, talk, to even think about it. It's better to lose myself in a good game or music instead. That's how I came to this post.

I just discovered the band London Grammar. They fit my energy levels really well. Emotive and has depth, but slower trip hop/ rock. I want to share a few songs by them that resonate with me.

"Strong"

♫And a lion, a lion, roars would you not listen?
If a child, a child cries would you not forgive them?
Yeah, I might seem so strong
Yeah, I might speak so long
I've never been so wrong♫



"Bones of Ribbon"

♫Take determination
Take whatever you need
'Cause your body's made of metal
And your skin, it isn't real♫



"Sights"

♫Keeping your strength
When it gets dark at night
What are you made of
Water and glass
Keep it in your sights now
It's keeping you up
Keep it together
Keep it together♫

"Wild Eyed"

♫Sun suffocate the atmosphere
But I'm safe with you far away from you
Another fire through another open door
It's what I'm living for♫

Venting on a Flare Day

Today has been the perfect storm... 

I'm not okay.

My period is running late, but I've been in PMS for about 2 weeks. I've grown so weak from it, and my mood instability took over yesterday. Today the barometric pressure is contributing in its own exhausting way. Yesterday we shot off fireworks for Independence Day, and, well, the smoke played its huge role on how I'm feeling. POTS is roaring and telling me to stop trying to move. Not to mention the fact that I'm just overly tired from too much happening in my life. I've been running on empty for a while.

It's 3:30 now and I've been asleep 70% of the time since midnight last night. When I've been awake all I can do is tend to my nausea, bowels, vertigo, tinnitus, jello legs, cramping, and super bad mood. Why am I writing this with what little energy I have? Venting, of a sort. I have to talk about how I'm feeling somehow. I deal with it better when I can take it out of my internal self in some way.

This was me yesterday, putting on a face. I felt mean, exhausted, borderline ready to blow up in rage (if not for the exhaustion), and dealing with cramping and pain. I got dressed up for planned family photos. I tried so hard to hide it, and it ended up resulting in being very withdrawn with a few angry words that slipped out. Basically, I was faking being well. I'm so so so so sick of hearing "but you look good!" Yeah, I looked good on purpose. I'm not happy with my bangs, but whatever. It doesn't reflect how I felt. My head is twisted so you don't see my acne.




This is part of what's happening below the surface:




I use Clue, Period Tracker, and Fitbit to track my periods. Featured here is Clue. It's not the easiest to understand how to read these charts if you're not familiar. Those 2 red dots before the blue "fertility window" part of the cycle were when I was spotting during ovulation. The app keeps pushing up when I was in ovulation due to the length of time between my periods. I started PMS symptoms with ovulation, when I was spotting, I just forgot to track for a few days. All those colored dots in the last 12 days are PMS symptoms I'm experiencing (that I remembered to track.)

If you look at the calendar in the next photo, you can see how much of my time my menstrual cycle is affecting me. The blue times, or ovulation, always come with their own set of symptoms (even if I forget to track.)

This is all below my surface. Add to it MCS reactions, POTS, Chronic Fatigue, Chronic Pain, IBS issues... Seriously, I'm so over all this. I spend every freaking day dealing with all the crap in my body that I don't/ can't necessarily show on the surface.

I really didn't want to call in sick to work today. I try to reserve that for only the worst of the worst. I know I'm about to get even worse whenever I actually do start my period, so I wanted to save it for then. But I just had no strength to work with. Every time I got up to the bathroom I just saw spinning flying stuff around my head and my legs were wobbly. Eating made my symptoms worse. I couldn't stay awake. I kept falling asleep with my phone on my chest.

Getting sleepy and cross eyed trying to write this, but damn... if only I could scream and punch and curse and exorcise this demon out of my body. I need to talk about this. I need comfort. I need compassion. But it seems like most people in my life just want to tell me to suck it up and deal with it. I don't feel safe saying what I really think or feel to most people.

And tomorrow? Who knows. But I'm scheduled to work and my coworkers will be too short staffed without me. This is very stressful for me. It's not anyone's fault, but I can never know if I can be depended on when I'm late to start my period. The stress...…… grrrrr

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. 

This was one of my German footbaths. This is not that silly type of detox footbath that turns colors based on what the water pulls out from your feet (hint: the water in those turns colors even if your feet are not in it!) This is a seaweed blend and it feels amazing on my purple freezing feet. 

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!

<sub><sup>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.</sup></sub> 

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!

<sub><sup>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!</sup></sub> 

I choose the Great Head Trail

I wanted to do the tree, but I didn't want my dirty foot on my pants, so I did an awkward incomplete version. Hahaha

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. 

Planning is Impossible

It's too early for my period to begin, about 10 days too early, but I'm in full blown PMS feeling like I'll begin the cycle at any moment. This is horrendous timing. If I'm this early this month, then I'll probably start my period while I'm traveling next month. It will ruin the entire *expensive* trip. Why did I schedule the trip so close to my period? I had no way to predict what would happen. I was very late the last two months. I had limited options of when I would be able to go due to my husband's schedule. I just had to guess on when would be a safe time to go.

Blood pressure is 89/57, pulse hovering around 100.

Sleep? I had nightmares all week when I was actually asleep. Last night I was finally exhausted enough that I got 9 hours of sleep, but I woke up feeling worse than every other day with poor sleep this week. My acupuncturist explained that my liver qi is rising, causing the nightmares.

I feel like I'm anemic - anemic on blood, life force, will to live... I'm just so weak today, physically and mentally.

I'm so tired of stressing over my body's problems lining up with my life plans. I can never stop worrying. I can never trust that I'll be able to participate in anything in my future.

In the words of Freddie Mercury, sometimes I wish I had never been born at all.
Why did God design our bodies so that we could suffer so often and to such a great amount? This is my cross to bear. I could be suffering just as badly in other ways. I could live in a war torn country learning to live with constant death all around me. Instead, I was born into a very stable loving situation. My suffering is just constant physical pain and exhaustion. But it's enough to drive me to insanity. To live with constant grief over missing out on my one and only chance to fully live life is enough to drive me to insanity.


Anyway, I really need to delay this period. I need to it at least start when it's supposed to. It simply cannot be early.

I'm going to try doubling my progesterone cream amount, and I'm going to take a Chinese herb blend (called Twin Sages) that is for stopping excessive bleeding. It has the type of ginseng in it that can help delay periods. We'll see if it works.

I'll probably end up getting stuck in this level of extreme fatigue and moodiness for the next 10 days if actually works. That's better than starting my period early next month while traveling.


I have the feeling that the best time of my life will be post-menopause. Then I'll give the middle finger to endometriosis and live spontaneously.

I am one of the most suppressed versions of myself. I wonder what kind of life I'm living in alternative realities where endometriosis, POTS, chemical and environmental sensitivities, chronic fatigue, anxiety, and depression don't control me? I wonder how many children I'd have, what kind of career I'd have, how many times I would have climbed Mt. Everest, how many books I would have written...