Endometriosis Awareness Month: A Glimpse Into My Reality with Endo

It's endometriosis awareness month. 

First, here is an awesome Facebook post with some info about what Endo is and what it is not:

I'd like to write about my current cycle in honor of raising awareness. 

A little personal history, for context.

I've had extreme periods since I was 17. When I started to use menstrual cups, I counted how much I bled on the first day of period over years. I normally filled my size 2 Diva Cup 3-7 times full in the first day of my period. The average person fills their cup 1-2 times full through their entire period. Along with this heavy bleeding was excruciating pain. Full body pain. I could move a toe and feel it cramp up my leg and trigger pelvic pain that felt like someone stabbing me with a knife repeatedly. I also had relentless diarrhea, which was super painful. I could sit on the toilet and feel my heart rate skyrocket to the point where I was seeing stars, seeing my vision slowly go black, and I would gasp for air. All while my body purged itself beyond my control. Yes, I've fainted from all this. I took up to 12 ibuprofen on the first day of my period for years, and it didn't work well. I kept taking more hoping for any pain relief at all. I was like this for years and years. Finally, a doctor told me my liver was in poor condition, and I admitted taking all these painkillers (and a daily Allegra D) to him - he warned me to stop because that was causing a lot of damage to my liver. So I was left with no real option for managing my allergies and pain in the conventional way. (I always refused birth control as an option for religious reasons, but also because I read all the side effects and didn't want them. Doctors did drop me because I refused birth control.) 

In 2013 I started to work with a Naturopathic Doctor in New Hampshire. We did a lot of work to improve my health. By following his advice, over a few years my periods slowly became about 50% less intense. My bleeding reduced down to 1-3 full Diva cups on the first day (still heavy, but manageable.) My pain was still intense, but he made a tincture for me that actually worked. It blocked estrogen receptors, which did reduce my pain a ton, but it also knocks me out. So when I take it, I sleep for hours through the worst of my symptoms. He put me on natural progesterone and hormone-balancing herbs, which made a big difference over time too. He changed my diet, which made a big difference. My PMDD was not as long or severe, my cycles were more regular, I didn't bleed as heavily, I was more stable during my periods with less fainting issues, and my level of fatigue wasn't as strong anymore. But I stopped getting better. Everything improved about 50%, which was miraculous to me, but I stopped improving more. 

In 2018 I was first diagnosed with POTS, and the next week I had a $14,000 laparoscopic surgery to look for Endometriosis. My surgeon was a local gynecologist doing the Davinci Robotic surgery. She was sure she wouldn't find endo - in fact, she was doing the surgery just to help me stop feeling convinced that I had it. She told me it would be a 30-minute surgery. She was wrong. It was 3.5 hours long, and she did find endo. She took a biopsy and confirmed it in the report, but refused to give me a "diagnosis" in my chart. Why? I don't understand that part, seriously. So when doctors see my medical records they only see the surgery, but not the result. Anyway, she removed endo from my Pouch of Douglas / Cul-De-Sac, which was probably where the majority of my pain was coming from. She also found it on my uterus and ovary. She was unable to fully remove it from my ovary without removing the whole ovary. The problem with endo is that if you don't have it fully removed, it grows right back. She also found that my uterus was tilted backwards. In the year after the surgery, my periods were the lightest they had been in my life. My pain was a little better too. But the results didn't last longer than a year. 

After my surgery, I was still bloated from all the air they pumped into me and my scars were bruising. 

In the last few years, my periods have been slowly getting worse and worse again. My PMS has been turning back into PMDD again. My cycles are less regular. What has changed? Well, a lot of stress in my life. I've stopped using the herbs as regularly. My diet has loosened up a little. And I think, most importantly, I've been unable to have regular acupuncture treatments in the past 2.5 years. Acupuncture made a huge difference for me.

I've always had to call in sick on the first day of my period. I never improved enough to be able to work on the first day of my period. I had to miss very important events in my life because of it. And despite all the medical care I've been though, all the extremely strict diet and lifestyle changes I stuck to for years and years now, and all the praying and therapy I've tried, nothing helped enough to give me a "normal" first day of my period. It always made me so sick that was bedridden with major pain, fatigue, and vertigo for the day. 


And now, for the present.

So let me talk about my current cycle, to give a glimpse into the turmoil I live with every month. I use the Clue app on my phone, and I pair with my Oura Ring. I'm not good at tracking all my symptoms, but I am very good at recording the first day of my period. So let's look at Clue for this month:

Each dot represents a tracked symptom per day. The red phase was my last period, and I only tracked for 3 days of it before I forgot. I bed 5 days, I think. The days with 2 dots are because of information my Oura Ring automatically sends to Clue: sleep and body temperature. Then the blue phase, which is ovulation, you can see extra dots. That's because I bleed dark purple thicky sticky blood for 3 days during ovulation. Then, when the 3 dots appear again, is when I started to record my PMS symptoms. I had symptoms for a few days before I started to record. I had acne, bloating, mood changes, scalp tenderness/ sensitivity, and fatigue issues, but they were not bothering me enough to think to record it. So I've had about 10 days of PMS symptoms. What does that mean for me? It means gaining a pants size in bloat, relentless hunger (even eating high protein with some extra carbs), very sensitive mood that causes me to feel everything too deeply, moments of unprovoked anger, days of irritability, feeling super anti-social, withdrawn into my head and difficult time being in reality, random cystic acne around my mouth and on my chest, ringing in my ears, deep fatigue that caffeine can't cure, nights of insomnia and then nights when I sleep 13 hours, very achy deep throbbing pain down my legs, vertigo and dizziness that makes me really unbalanced, sharp throbbing cramping all over my pelvis, feeling a bowling ball growing in weight in my pelvis, unpredictable bowel movements, throbbing aching teeth, swollen tender breasts that hurt to touch, sharp nerve pain in my breasts, inability to completely empty my bladder, and I'm sure there are symptoms I'm forgetting. 

 My period is late. "Late." I've had years with my average cycle lasting 30 days, and years when it was 35 days on average. I've just been in a 30 day average cycle this year, so now this looks late. 

The problem with me being late is that I've had many days of symptoms that marked what should be the beginning of my bleeding: major cramping, vertigo, and fatigue followed by an improved mood. All the symptoms that tell me it's time to lay in bed with my heating pad and stop doing anything else. Except that my bleeding didn't start. I've been in this state for about 5 days now, feeling on the verge of starting my bleeding. I had two shifts at work that were difficult for me to endure, but I didn't get bad enough to have to go home sick. I was mainly concerned about fainting, so I drank lots and lots of salt and took licorice root pills to keep my blood pressure high enough. 

Since I can't read my symptoms reliably, thankfully my Oura Ring gives me a clue that I can almost rely on:

(I recorded my period start day one day earlier last month, so the apps don't agree. That's because I started bleeding a tiny bit the day before, but without all the symptoms of my first cycle day. So I recorded a different day in each app to help me predict my next period.)

Ok, look at the body temp graph. The line is my baseline average body temp. Each day marks if I was higher or lower than my average. I tend to increase by a half degree to a full degree in the last 5 or 6 days of my PMS, and when I see my body temp drop below average, I'm usually ready to start bleeding. So you can see why this month is confusing: 3 days ago my temp dropped, but not below average. Yesterday it did drop below average, and I had all the symptoms that said my bleeding should start (including my breast pain going away.) But I only bled a tiny little drop all day. Ok, so today my temp was below average again. I checked my Diva cup this morning and it had a small stream of very dark black blood on the edge. I haven't bled more since then. 

I called in sick to work today. I am only writing this blog because I drank enough green tea to help warm me up, and I hoped the caffeine would encourage bleeding. The reality is that I'm sitting very still at my computer to type this. I'm taking lot of breaks to breathe and rest. I'm getting really dizzy at moments. I'm getting immense pain for brief moments. There's no way I can stand up for 5 hours to do my job like this. And I won't improve until I bleed. I am in limbo. I'm unable to function until I bleed. 

This is a glimpse into my reality with endometriosis. When I say it dominates my life, you can see why. I get maybe 1-2 good weeks per month where it doesn't limit me or control me. 

Florence and the Machine - You Can Have It All

This album was about her ectopic pregnancy and miscarriage that nearly killed her. She wrote many songs about the grief and the reaction of her fans. It's an album that will make you cry. This song, although about miscarriage, reminds me a lot of my experience with endometriosis. "Am I a woman now?" Is this what it means to be a woman? The loss of a child/ inability to have a child. Being controlled by our bodies. How to exist in the circumstances of our bodies?

Entering 2026!

Out with the old year, in the with the new year!

The view outside my window Christmas day. The fog froze to the trees! So pretty.

But first, I'm sure that Facebook and Google collaborate to manage my Facebook feed for me. I told my Oura Ring, Clue App, and Fitbit that my period started. Now 50% of my feed is about endometriosis! It's not necessarily a bad thing, right? I get to learn all sorts of facts from surgeons and doctors making reels about it. But there really is no such thing as health privacy anymore. While I heavily rely on these apps to help me understand what is just PMS versus a sign that I'm actually about to start bleeding (therefore be sick in bed for most of a day), I also know that I'm a data mine that I'm paying to contribute to. I pick and choose my battles with technology. Do you all think it's worth using technology to monitor your health, knowing it's never going to be private? Oura probably helps me the most, but Clue's tracking is the best. Fitbit is almost useless, but I do it anyway. 

I should write an updated blog about my Oura Ring, since it's changed a lot over the years with all their updates. I do find it very helpful in some ways, and less helpful now in other ways.

It's the last day of 2025! I woke up in 2025 in Gaffney, South Carolina. In the middle of the year I said goodbye to the South. I will wake up tomorrow (2026) morning in Bismarck, North Dakota. 

Some observations from 2025:

❄ I feel less symptomatic in the cold weather. I know it seems backwards, because my body runs cold from poor circulation, but the heat triggers more symptoms for me. I can always warm up when it's cold. I can sit in front of the fireplace cuddling with a blanket. I can wear a big snuggly hoodie. I can drink hot tea. I can use my sauna or sit in the bath. When it's hot and humid, how do I cool down? I sweat very easily with pins and needles prickles all over my body from the heat, and my heart races like crazy. I sweat just from standing up and my heart starting to race. Cold water triggers symptoms for me, unlike warm water. Removing clothes makes me too cold from the temperature change, which causes my nerves to ache. The cold weather might make me shiver, but I can manage it. I can't manage heat. 

✌ The people I spend my days with have a HUGE impact on how I feel. This actually has more to do with me than them. I tend to unconsciously adjust my personality according to the people I'm around, but I also spend energy keeping a shield up to protect myself from energy I can't handle. Some people are full of anxiety, frantic high-strung vibrations, contagious depression, anger that poisons their every action, and other vibrations that I can feel, even if they don't say it. Negative energy tends to feed on my attention, which requires my energy and strength. I don't want to absorb the vibrations, but I do. I'm built that way. If I shield myself, I drain myself anyway. So it's extremely important for me to choose to be around people who are peaceful, respectful, loving, have good vibrations, and lift everyone around them. Choosing to be alone can be the healthiest thing for me too. I'm introverted, so I need that recovery time regardless of my chronic illnesses. But the right people don't drain me. The right people can help me live and enjoy being who I am, even when I'm in pain or feeling unwell. I have to choose my people very carefully. 

(I'm not saying that people are bad because I don't tolerate their energy well, and I'm not saying that people going through tough times are bad for me. It's all about how well a person can manage their emotions, because unmanaged emotions are what leak out and affect people around them. When a person who understands how to love and respect others is grieving or in pain, their energy doesn't sour and drain me. When someone hasn't worked on their emotional intelligence and is still emotionally immature, they tend to drain me no matter what their life experience is in the moment - it's not because they're bad, it's because I don't have the energy to be what they need me to be to support them.)

💸 The better I feel, the more of a sucker I am for advertisements for things I might be interested in buying. The worse I feel in the moment, the less I care. The internet is a dangerous place for me to be when I'm feeling some mental energy, because I will not use my energy well online. I might not actually buy anything, but I will window shop every sale and seriously consider some items. Then I regret spending my usable energy for the day that way. Totally wasted on being a sucker for social media ads. It's actually a big reason why I'm using Facebook less. I spend time in specific groups on Facebook, but I'm avoiding scrolling my newsfeed now. I do want to know about local businesses and events, but not at the cost at seeing loads of ads and celebrity gossip that I didn't ask for. So therefore, when I'm feeling well enough, I prefer to skip social media and go straight into gaming. If I'm going to spend my energy at my computer, gaming feels way better. If I feel well enough to do something more than sit at my computer, then I should actually physically do something like use the treadmill or clean or cook or fix something, or socialize. I've had more energy available to do things like this since moving back to ND! 

🎶 I love specific music at specific times, but silence is actually my favorite for regulating my nerves. Music stimulates or blocks my senses, which can be really helpful at times, especially while driving or cleaning. But the best way to preserve my energy is to be in silence, without the need to feel alert. I can't recover well unless I'm in silence. I used to use ambient music to help me rest, but mainly I did that to block out everything else I could hear so I could dull my senses. Silence is better. This isn't a negative comment about my husband, but it is just a fact: he always needed something playing in the background. Music, TV, radio, podcast, just anything to focus on. That was fine for him, but I needed a lot more silence in my life. I can get that here in ND.

🐔 I really loved my pet birds. I had 2 cockatiels (that's why I chose the chicken emoji, ha!) One was at least 30 years old, and I've had him since I was 7 years old. The other was 12 years old and she bonded to me. I had to give them to a new home (I don't want to explain, but I had no choice.) I loved them so much. But they were a lot of work, and I often didn't have the energy to take care of them properly. I felt a lot of guilt about how little attention and care I gave them sometimes. As much as it broke my heart to give them to a new home, I also felt some relief. They went to a home where they get more attention. I don't have to drain myself on cleaning their cages, which was a big ordeal! I don't have to run to them every time they call for help. I don't have to be on alert 24/7 for their sakes. I am my only responsibility now. Right now, this is therapeutic. I'm getting to have a break. Please understand that birds are like 3 year olds that never grow up, and I've been caring for them my entire life. They're not like children who have needs that evolve over the years. I'm happily accepting the rest from the responsibility right now. I lost my ability to be alert. I'm burned out. I do know that I'm going to be deeply sad about losing them once I recover though. I don't want a new pet as a rebound... I want a family. I want a husband and children. That's another story. I'm choosing not to feel guilty. My birds are with a good family now, and I'm where I need to be to heal. 

🛣 So many people say it's brave to choose to leave my marriage. I've been reflecting on that a lot, because I don't know if "brave" is the right adjective for me. He wasn't abusive, bad, mean, or anything of that nature. I wasn't completely dependent on him, because I was always able to come home to my parents, which is a great situation (not a last resort like for many people.) It wasn't brave, it was simply just difficult to leave because it required effort. It was easier to stay because it was familiar, and we didn't have problems getting along on a day-to-day basis because we're both nice people-pleasers. But South Carolina taught me that it wasn't actually easier to stay. He said my illness was like the 3rd person in the marriage, but I think his career was the 4th person in the marriage. His career was most important to him, and his career was not easy for me because it meant a lot of instability, uncertainty, and unnecessary stress. It costs a lot of money to move - SO much money. His career isn't stable enough and doesn't pay enough, so the risk of moving for jobs often is too high. He was sad that I didn't make more money than him so that he could afford his career, but the reality is that he always wanted a job that would require relocating to places that I didn't necessarily want to live. A job that is fading away with budget cuts. I couldn't continue living in a high-stress situation just so he could live out his dream, which wasn't my dream. I wanted him to be happy, but I wasn't, because I was only along for the rocky ride. Even if he switched careers, I knew I would be along for a very stressful and uncertain ride. It wasn't brave of me to leave, it was mostly just practical. I needed to realign myself with my own values, goals, and needs. And so as I enter into 2026, I look forward to planning for my own future!

🎇 So as I enter into 2026, I'm choosing gratitude. I'm not entering into the new year with fear, uncertainty, bad vibes, depression, anger, resentment, or anything negative. It's all in the past. This is my fresh start. The future isn't something to fear. The future doesn't need my past baggage. I'm hopeful! 

Another thought... 

As I read through what I wrote, I realize that I might sound neurodivergent. I talk a lot about stimulation, feeling alert, and trying to maintain calm nerves. I have never been tested for neurodivergence, but I've seen the changes in myself from before and after getting sick and know that this illness caused these sensory issues. I wasn't like this until I caught H1N1 in 2012. I've had to do a lot of work on myself over the years to tolerate sensory issues better. In the first few years, lights, noises, textures, temperature changes, and everything sensory really bothered me. Sometimes noises and changes in lights were really painful. I'm not as fatigued now as I was back then, and I have a higher tolerance now, but sensory issues can still trigger some pain for me. My primary issue now is that I'm always feeling "alert" and I need to be able to stop sensing everything so my nerves can calm down. It might be psychological - a defense mechanism, maybe. But I do know that my need to feel "alert" isn't within my control, and when something "alerts" me I get a lot of nerve pain and waves of freezing cold through my body. It's something I hope will calm down with time, now that I've parted ways with the majority of the stress in my life. 

Eivor - Let It Come

Sometimes

I overthink the most simple things

I go blind

I don't see the solutions in front of me

But today, the sky looks different

And I am wide awake, my heart is quivering

(Let it come, bring it on)

There is something in the air, it's liberating

I can feel it moving

This time, it's coming for me

Something I've been waiting for, I can't explain it

I can feel it moving

This time, I'm ready for it

It's time

To trust the voice in me

Synchronize

Every part of me to this moment

Today, the sky looks different

And I am wide awake, my heart is quivering

(Let it come, bring it on)

(Bring it on, bring it on)

(Bring it on, bring it on)

(Bring it on, bring it on)

(Let it come, bring it on)

There is something in the air, it's liberating

I can feel it moving

This time, it's coming for me

Something I've been waiting for, I can't explain it

But I know I'm changing

This time, I'm ready for it

Ready for it

This time, I'm ready

Let it come, bring it on

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.

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...

Flu then Pnumonia then "Recovery"

First my husband came home with the flu and he was absolutley miserable. Then he had a week where he felt well enough, and I developed the flu. Then I started to feel slightly recovered and he developed Pneumonia. I had a week where I felt slightly ok, but had an extra painful endometresosis couple of days. Then a week later I got Pneumonia. X-rays and doctor confirmed Pnumonea. It looked like I had spider webs in my lungs. I was so incredibly sick, unable to lay down to sleep, that I willingly took the antibiotics. It turns out I'm allergic to amoxicillin, so then I had a few days of rashes and hives that left me in tears. I had to take antihistamines and lay in a baking soda bath for hours to feel even slightly comfortable again.

About 2 months of this is way more than I can handle. I'm still coughing up big wads of green from my lungs, and my ears often won't pop. Add to it severe negative windchills (as in we got below -40f several times), followed by a massive snow storm of 10 inches, and now tonight we're due for the next massive snow storm. We're in blizzard warnings right now.

I'm stuck inside of a house that I don't have the strength to clean, and I can't open the windows to air it out.

If I've been very grumpy, distant, selfish, unresponsive, or unsupportive... well I'm not sorry! I have not been well - no, I have not been ok!

My body is weak to begin with, so when put through the flu and Pneumonia back-to-back, you should not expect me to simply recover and get back to my life. My POTS has been strong, my fatigue intense, my sleep is a major chore... but more than anything, talking to people is the worst. I can't break out of my own head, and it's not even a choice - I simply can't listen. I'm trapped in a prison in my own head and everything you say bounces off those prison walls. I can't handle myself, so I cannot take you on.

I've pushed away my friends both online and in person. It got to the point where I almost felt like I resented them, almost hated them. I didn't want to talk, and I didn't want to listen. I hate that I ever felt that way, because I love my friends. But even now I still don't enjoy talking to them because I don't have the energy to engage. I don't even like TV shows because I don't want to listen to the character's problems. I can't take anything else on. I just need to recover myself.

I might need another few days. I might need a few more months. 

Getting sick on top of a chronic illness is very challenging. Pneumonia is no joke. People often get hospitalized from it. People die from it. I wish I was hospitalized. I really wish I had a machine attached to me to help me breathe, a port for regular IVs to keep me stable, a vacuum to go into my lungs and suck it out... at the very least, having trained medical professionals there to help at a moment's notice. That would seriously have been very helpful. But no. I suffered through it from bed without much help since my husband was so busy. I very inefficiently coughed way too much, slept way too little, sweated too much (I was up to 103f fever and the fever lasted just over a week), and ate poorly. Why? Because I was afraid of the cost of seeing a doctor, I didn't want to go on their drugs, I didn't have the energy to explain all my medical issues to them (that they still won't understand because they've never been trained on my issues), and I honestly felt like I didn't care of I died.

And now the most help I've had for my recovery has been acupuncture, but due to the weather I've only been able to go once. Acupuncture helped get more out of my lungs than anything else has, and gave me the strength I needed to rest properly. I'm going back for another appointment in a few hours - hopefully before the blizzard begins!

All I'm trying to say in this blog is that it's critically necessary to be patient with people who are sick on top of having chronic illnesses.

Thank you. 

PMS is Torture

Extra long PMS

OMG



This was captured 2 days before my period started, so I had a 43 day cycle. I'm used to PMS being awful. I'm not used to PMS lasting 2.5 weeks, give or take a day or two because I think my symptoms began with what was actually ovulation. Ovulation just came late, so it was difficult for me to tell at the time.

It started with the mood change, cravings, and skin issues (acne, large pores, looking pale and malnourished.) The cramping set in after a week of that, then the bloating and heaviness in my gut. My mood issues came with feeling very withdrawn, not wanting to engage with people. After 1.5 weeks of this, thinking my period was due, I started to get the rest of my PMS symptoms. The breast tenderness, bowel pain, ovaries feeling like they're twisting and sending shooting stabbing pains down my legs to my knees, worsened insomnia with angry dreams, joint pain, fibromyalgia aches in all my muscles, disturbed vision, much weaker and more dizzy, very increased resting heart rate... it was like a 2nd PMS. That lasted for an additional week of torture.

The reason I'm reporting all of this is because it's so important to say how PMS can be just as bad as the period itself, if not worse. I actually dread PMS more than my period now. My mood was dark - so dark that I started to have suicidal thoughts (I wasn't planning anything, just thinking about how death would be an exit... this isn't abnormal, unfortunately.) I was too weak to accomplish anything, and too mentally blank and emotionless to enjoy anything. I spent about a week doing nothing - I couldn't do anything. I hated people, hated myself, didn't have a way to pass the time that made me happy, could hardly force myself to get anything like chores done... I was in this limbo, and I was ready to snap.

I do believe I have PMDD. Doctors have suggested it, but it's not officially diagnosed, I don't think. I'd have to read my charts to see if they put it down as an issue. PMDD is PMS on steroids, but it's classified as a psychological issue. PMDD is about the mood disorder that comes with PMS, mainly how the person so negatively relates to other people during PMS. It's not that I can't be nice or sincere, it's not that I'll be mean to you or blow up at you. It's that I seriously don't have the spirit to talk to anyone, listen to anyone, or even tolerate myself. I need interactions to be very short, very to the point, and almost mechanical - just do your business and be done with me.

You can't say I didn't try hard to manage this. I took my methylated vitamins, loaded up on vitamin D, my hormone balancing herbs, my bio identical progesterone cream, went to acupuncture and chiropractor each week, ate mostly blood building foods, exercised as I was capable, took lots of hot ginger baths, took my calming and cortisol suppressing herbs as needed, had a lot of alone time away from people... no one can say I didn't try hard.

My period *FINALLY* came last Saturday ALLELUIA! I had to call in sick to work... again. I have no control over this, which is why I chose to be very upfront and honest about this issue during my interview for this job.

My period was very painful, as expected. Remember how I had a laparoscopic surgery to diagnose and remove endometriosis? I'm not sure what it actually accomplished, aside from an official diagnosis. In fact, PMS has been worse than I'm used to since the surgery. I had 2 periods that were not very painful or heavy after the surgery, but then they went back to heavy and painful. The PMS, though? OMG.

But guess what? Yesterday, Sunday, the day after my period started, I felt SO MUCH RELIEF. I found myself wanting to talk to my husband. I messaged friends and laughed. I got some housework done. I shoveled the driveway! I didn't feel strong. I fought my POTS symptoms pretty hard a few times. But I mentally felt good. I wanted to be a part of my family again. I wanted to engage with people. I felt human! My period has become the remedy to PMS, when it used to be that my period was the scariest most dreaded part of my month.

From my Oura Ring.

(Note: The Oura is actually pretty bad at detecting when I wake up. I tend to lay in bed for an hour or longer after waking to find my strength and get up. It tends to show I get an hour or more of light or REM sleep than I do because of this. I need to learn to take it off once I'm awake to get better readings.)

This night was a week before my period started, but it's the best example I had from that week of what PMS was doing to my sleep. Most other nights had very choppy data, as if the ring couldn't read me for 30 min to an hour at a time during the night. Which tells me there's an issue... not sure if it's with the ring being unable to keep up with me, or if the ring wasn't tight enough because I was too cold.


And then my period started. Brachycardia! Whoa. The only time I see a heart rate below 60 is the night after my period starts. This has been consistent in all my recordings this year. Even my ZioPatch from my Neurologist showed the same thing. My Fitbit Alta 2 actually said I got down to 57, but I'm not expecting perfect accuracy from either device. I just get to see a general idea of my body's changes.



So to any of you women who tell me I focus way too much on my period and I need to learn to just push through it... well part of me really wants to get rude and nasty and tell you to **** off. But I'd rather just be understood, build empathy and compassion, and have your support.

And no, I refuse birth control. There is no way I'm going to take non-bio identical synthetic "hormones" that shuts down my production of real natural hormones and makes my body think it is pregnant long term. I don't want the very long list of side effects, especially the ones that will exacerbate my other conditions. It does not manage endometriosis very well - just ask the support groups I'm in with 20k women. The fact of the matter is that PMS has never been as bad as it has been since that surgery. Will synthetic hormones really fix that problem?

Anyway, now that I got this post off my chest, I want to go back to enjoying being myself! Hopefully for 3 weeks this time!