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 I tried so hard to hide it, and it ended up resulting in being very withdrawn with a few angry words that slipped out.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

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!

Day by day by day by day...

Oh to be me.

What is a like to be a 31 year old woman with chronic illness? Here are some snippets from my life lately:

Today I went to my local food co-op because the fridge was getting to be too empty. I felt tired, worn down, but thought I could handle a 40 minute round trip out of the house. I get the store, start shopping, the next thing I know I can't stand up in one spot without starting to see the blackness forming on the peripherals of my vision. My legs started to shake and tingle. I decided there was no sense in sitting down on the floor of the store, so I decided to just keep walking. That worked. I learned I could make it as long as I kept moving, so I couldn't stop to look at products, just had to grab as I walked by. I made about 3 laps around the store to shop this way. And guess what? They were completely out of the few things I needed most! A normal person might shrug it off and go to a different store before heading home. Me? My energy was spent. Had to go home without what I needed.

...That's a big reason why I shop online as much as I do. Except that I never received one of 3 boxes from my Vitacost order. I need to sort that out, but do I really have to put the energy into it? Seriously? Why can't it just sort itself out like magic and let me just sit here zoning out?

The cashier asked me how I was doing. I bluntly, with no tact or thought, said, "Not good, I didn't sleep last night." She asked if I was stressed and I said, "No, I just have a chronic illness and it decided to flare last night." She didn't have much else to say to me after that. lol. Poor cashier.

Why didn't I sleep last night? Oh, because PMS decided to start, and I was in full bitch mode. At 2 am. I wasn't upset about anything, nothing to be angry at. No person was irritating me. My mood just decided to be as aggressive and irritable as possible, which kept me up, tossing and turning. Then when I was sleeping here and there my dreams were very aggressive. I dreamed about my friend who attempted to commit suicide several months ago, which woke me up because I felt stressed out about it. I never really recovered from her telling me she failed her attempt.

I woke up to throbbing shoulder muscles, shooting and pins and needles pains in my legs, and adrenaline pounding through me.

And I realized how this is pretty much how every day goes for me, but it's so much worse during the winter. I'm never really sure if I'll sleep. I'm never really sure if I'll feel decently. I'm never really sure if I'll have the energy to be able to hold a conversation. I'm never really sure if my depression will let me actually care about what someone is telling me. I just have to figure out what I need to do with myself, moment by moment.

So what's the problem? Well I found a ton of mold growing on my new windows, for starters. Winter condensation that freezes when it's below zero outside causes it.  The outside temperature went from -6 degrees to 47 degrees within a day, and we all know how the barometric pressure messes me up. We did just shampoo the downstairs carpets with Biokleen shampoo, which I didn't react to while doing it, but later got a mild version the hives around my eyes that citrus essential oils tends to give me. Plus we disturbed all that dirt in the house. I also went to church. Perfume! And then my monthly cycle just hit the worst phase... and I've been spotting, so who knows, maybe I'm anemic or something. I seem to be very prone to Blood Deficiency.

You see, I just can't win, especially not in the winter. When I feel decently it's purely by chance.



So...

If I spent my entire day playing video games on my phone, so what? At least I'm engaging with people there. At least I feel like I'm accomplishing something, even if progress in that game doesn't affect my real life in any way. At least I'm mentally stimulated rather than just rotting away watching TV. I can't just watch TV, I need to be engaged with something, and video games work perfectly when I'm too tired to do anything else. I'm often pretty bad at the game because I don't have the mental energy to think through what I'm doing, but it is what it is.

I will work at my job, do chores, and contribute to society when I'm capable. I have days when I'm just not capable. A lot of days. I'm not lazy. It's not an addiction to video games. I just can't function normally. Believe me, I'd much rather be raising children, own my own business, going out with friends, working towards buying our own house. I have to deal with these desires every day. If I were lazy, I wouldn't want to be living my life fully. I'd be happy to just settle in to a fun addiction rather than working on progressing in life.

So let me leave you with this article about environmental toxicants causing depression, pain, and chronic fatigue.

Post-Surgical Depression

I really question if the laparoscopic surgery was worth it. I got a diagnosis, which is very helpful in communicating my needs with others. That alone is invaluable.

But I haven't been myself since the surgery. I've been emotionally dead too much of the time. It's not that I can't laugh and joke around with friends, but I have to be in the mood to now. I often see that my friends are having a good time and I could join in and have a ton of fun, but just don't want to laugh. I don't want to engage with them. I don't think it's just a lack of energy, it's definitely a mood issue. I feel myself going back and forth between feeling happy and engaged and completely emotionally cut off and distant. It's driving my crazy - as if I'm in PMS all the time. I'm not myself. I just can't find it in me to want to talk to people too much of the time. This all happened since the surgery.

I have had all sorts of physical issues too. My toes are almost always FREEZING icy cold, and now I have the first toe nail fungus infection I've ever had. I've gained weight and feel inflamed and puffy. My skin has broken out much more frequently and more intensely. My POTS symptoms have been worse. It's hard to stand up in one place for more than a minute. I have to lean on something or keep moving. It's exhausting to just stand still, and the blood pooling in my legs is more obvious. My feet turn purple. I've been more reactive to allergens again. Lots of sinus trouble with bloody noses this summer. My "fibromyalgia" has come back in waves. Muscle aches and cramps, tender skin, and pain with using muscles in slightly the wrong way. I have a ganglion cyst on my wrist under my thumb, and my thumb has hurt a lot. Can't squeeze anything without shooting stabbing pain. My finger and toe nails are peeling off the top layer again. My pupils are not the same size fairly often. I'm dizzy frequently. My energy level has been awfully low. My digestion is weak. I'm feeling low blood sugar before my stomach will accept food.

My husband keeps telling me I'm argumentative too. I sense he's getting frustrated with me. I'm trying. I really am. I just constantly feel like I'm at the end of my rope with energy for making decisions or tolerating changes. He's trying to get stuff done and accomplished and I just can't process it. When will I be able to handle it? I don't know. Probably in too much time to wait.

It feels like I've lost a lot of progress in my health.

I've been laying out on the back deck in the sun as much as possible. It's not been enough to warm up my freezing toes. The sun feels great, but it's not helping with the depression the way I was hoping.

Now I can't be outside easily. All the wildfires in the west are creating lots of smoke, and that smoke is heavy here now. We're in the red zone for air quality. The sky is just... gray.

I don't know what to do. It's hard to find motivation when all I want to do is lay in bed. But when I feel good enough I can log into my game and hang out with my guild mates and laugh and have a lot of fun. All from the comfort of bed. Great friends that don't require physical energy - it's a huge blessing. They don't need to know about my health issues. I can just be normal and myself with them. But as it turns out, many of them also have health issues - it seems many of us are attracted to the game for the same reasons. 

Laprascopic Surgery

Laparoscopy: putting a camera and lasers into your abdomen via your belly button to diagnose endometriosis and other organ issues.

It took me 5 years to finally agree to have it done, and in retrospect, I wish I just would have done it right away. That said, I think it took 5 years of trying to heal and improve through other methods to realize I just needed to get surgery. My periods did improve a lot through natural healing methods, but after 5 years I still had endometriosis to have removed. This is an expensive surgery that insurance might not cover for you, but I believe this is a surgery that you shouldn't put off if you are suffering from your periods.

A little background on me: Since I was 17 my periods have been living nightmares for me, some of them so horrendous that I'm fairly sure they gave me some mental trauma. I've had people roll their eyes at me when I've said this, but it's true: the trauma was real. I've been scared of each period as it comes, bracing myself for the extreme pain. I've had to plan my entire life around when my periods were due to start, and that hasn't always been easy because of their irregularity. The pain that came with the first day of my period was so extreme that taking 12 ibuprofen wasn't enough - I was counting carefully. Sometimes I had to knock myself out with Nyquil and sleep through the worst of it while wearing an adult diaper. 7-12 hours of laying in bed, screaming from the waves of pain that just moving a toe brought was trauma-inducing. Losing 7-8 ounces of blood on the first day alone was incredibly difficult to deal with. The pain and blood loss left me incredibly dizzy and sick in every possible way - imagine sitting on the toilet with extreme amounts of blood coming out of you while you're struggling to breathe and your vision is going in and out of being pure black. And then co-workers and past bosses have had the nerve to tell me I was just weak and should learn from other women who just deal with their periods.

I went to a gynecologist about 5 years ago who recommended having a laparoscopy done. She told me she was almost certain I had endometriosis, but needed to do the surgery to confirm it.  There is no other way to diagnose it. I didn't take her up on it at the time because my insurance wouldn't pay for it - my quality of life came down to insurance, yes. But I also started to see my Naturopathic doctor who told me he could probably improve my symptoms. He was right. It took a couple of years with his care to get enough relief, but he was able to reduce my flow from 7-8 ounces on the first day down to 7-8 ounces in 4-5 days time. The pain reduced about 50-75%. He made an herbal tincture for me that killed the remaining pain perfectly - it works a billion times better than any pain killer every did. So because what he was doing for me was helping over time, I didn't go back to my gynecologist.

But then about a year ago ovarian cysts started to give me pain throughout the whole month, and that pain has been growing harder and harder to deal with. I can't manage my periods without my tincture, which makes me very sleepy. I still can't go to work on the first day of my period - I couldn't even drive if I needed to. The problem is that even when the pain isn't that bad, I'm still fighting vertigo, diarrhea, air hunger, extreme fatigue and weakness, digestive issues, and depression on the days around my period. That is likely from POTS (Postural Orthostatic Tachycardia Syndrome.) I always assumed it was the period itself causing the problems. So when I went to the gynecologist a couple of months ago to finally have the surgery done to relieve the rest of my pain, I wasn't giving up on my natural healing methods, I just knew I needed an official diagnosis and more relief.

It took a couple of appointments and other testing done before my new doctor agreed to do the surgery, but she did agree that the laparoscopy was a reasonable next step.



My husband and I had to be at the hospital at 6:30 am for an 8:10 surgery time. I wasn't allowed to eat anything 8 hours prior, so as someone who fights hypoglycemia I was very thankful for a pre-breakfast surgery time. I was not asked to do a bowel prep, but I did it anyway. I am so glad that I did - if you're not asked to a bowel prep, just go to your local health food store and buy some magnesium citrate and drink it down the night before. You'll be thankful. I was asked to take a few showers with antibacterial soap, but I just used Dr. Bronner's tea tree bar soap (tea tree will kill anything). If you're MCS and cannot tolerate tea tree essential oil, I honestly think you'll be just fine with whatever soap you tolerate. I'm not in the habit of using tea tree unless I have to, but in small amounts I can tolerate it. They covered my belly in iodine before the surgery anyway. Yes, iodine, which was perfect for me.

I was not allowed to wear any jewelry, lotions, perfumes, etc. As it turned out, I didn't notice that any of my doctors or nurses smelling of perfume either. The only trouble I had with it was the scented bathroom soap, and I only used the bathroom once before the surgery to pee in a cup for a pregnancy test first, and I was able to use my own unscented soap that I brought with me. The bathroom still reeked of scented soap, and I was reacting and feeling unwell from it shortly before I went into shock. The shock wasn't just from the reaction, but it did contribute. I think that the hospital takes the operating room more seriously than any other outpatient service. So my MCS issues weren't a big deal for me personally until I had all the meds in me.

I waited with my husband in a pre-op area. I think it was obvious I was nervous because the nurse that was with me doing all the paperwork and official business with me on the computer asked another nurse to come stay with me. That nurse was amazing. She helped me get into this big gown full of pockets for hot or cold air to get hooked up to. She stayed and talked to me to help me stay calm, and she was the one to wheel me to the operating room. I went into shock while she was wheeling me - shaking, crying, shivering, hyperventilating... big adrenaline and blood sugar type crash. She made the decision to allow my husband to come with me to the operating bed, the place I was in before going into the operating room. I was still struggling while on the bed with shaking and breathing, but my husband was able to be there to help me. I talked to my gynecologist (who did the surgery) and the anesthesiologist there. My doctor is gentle and nice, radiates confidence, but isn't arrogant or dismissive of me at all. She had exactly the right attitude I needed in a doctor who was about to open me up, and made me feel at peace with having the surgery done.

They had read my cardiologist's report before hand and saw I was just diagnosed with POTS and put on the Metoprolol beta blocker. I told them that I wasn't comfortable with them giving me a beta blocker for the surgery since I hadn't tried the Metoprolol yet and didn't know if I would be reactive to it. They did give me beta blockers in my injections, though. What I'm not clear on is if they gave it to me preemptively, or if I was going into tachycardia and needed it. I wouldn't be one bit surprised if my heart rate was too high from reactions to the other meds - my MCS reactions sky rocket my heart rate. I was able to discuss my concerns with anesthesia with the doctor, and he listened well.

I remember being given a port for the IVs, but I don't remember being given the anesthesia. I woke up in the same place to hearing a doctor yelling at nurses. I heard, "You need to get your shit together! What if the patients saw you acting like this?" There was arguing for a while. I thought to myself, "Oh this is funny, I can't wait to share this with everyone." They probably assumed I wouldn't remember hearing that if they had known I was waking up, but I remember everything after waking up. Poor nurses.
I wasn't able to open my eyes very much at that point or move my body, but I was alert. It wasn't long before a nurse was helping me get into a wheel chair. I remember thinking it was so strange that only one nurse was needed to get me out of the bed into the wheel chair - that I was able to get up as if I didn't just have surgery. She wheeled me to a room where my husband was waiting for me, then we went into a post-op recovery area.

I felt great. I felt better than ever. No pain, no anxiety, no feelings. I was very relaxed. If that many pain killers can make me feel that good, what does that say about my day-to-day pain and anxiety?

Except that I could feel one thing: my throat. My throat was so incredibly dry, horse, and in pain. It was like they stuck sandpaper down it. What they actually did was put a breathing tube down my throat during the surgery. Part of the tube had cut the inside of my lip too, so I couldn't stop licking it. They gave me ice to suck on for my throat, and I ate applesauce and popsicles.

I went through one and a half IVs in that room, and I went though at least one during the surgery.  I couldn't feel that my bladder was very full and ready to burst. I was just numb. I just noticed an odd heaviness and questioned if I needed to go. The nurse had to walk me to the toilet. I was really weak.

My doctor came and told me that she did find scar tissue and endometriosis. She sent a sample of it to the lab, and burned the rest out. One of the spots of endo was on my ovary, so she couldn't remove it without damaging my ovary, but she did burn off what she was able to. She scraped at the scar tissue she found to loosen it up. The nurse and the doctor went over my care instructions for at home and how to take my pain killers. I was prescribed Percocet and prescription Ibuprofen. Not having taken pain killers for 5 years and remembering having trouble with them, I was so scared to start them. But I had no choice. They were necessary. More on this later.

I got dressed after peeing a bunch more, and they let me go home. I think we got home around 1:30 pm, so I was at the hospital for about 8 hours. I felt pretty good for a couple more hours, just laying in bed eating popsicles for my throat.




Note:

I've had this typed up and waiting to be finished for over a month. I didn't finish, but I just can't right now. So exhausted and my energy is going to more pressing issues. I can get into my recovery in another post, because that's about where I left off. :) 

Surgery and Diagnoses... It's Official!

In the past few weeks I was officially diagnosed with POTS, Inappropriate Sinus Tachycardia, ovarian cysts, and Endometriosis. It only took 5 years to get medical proof that I'm suffering, but I have it.

Here's the thing: POTS, Endometriosis, and Mast Cell Activation Disorder (MCAD) tend to go hand-in-hand. I haven't tried seeing a doctor for MCAD, but I have obvious chemical sensitivities that my Naturopathic Doctor helped me figure out. It could easily be MCAD - in fact, given the fact that I have POTS and Endo too, it probably is. I'm uncertain at this point in time if there's any point in me getting my chemical sensitivities diagnosed as MCAD by an MD.

The POTS diagnosis story:

If you follow my blog then you know that last December I saw Dr. Jeffery Cohen, a neurologist in New Hampshire to have some autonomic testing done to rule POTS out. The testing equipment broke, however, and he tried to cancel the appointment on me the day before my flight out there. He was willing to see me and look at other test results, at least. I went to cardiology clinic first and had a Tilt Table Test performed and an Echocardiogram. I did not faint on the tilt table, so the nurses said the test was negative, but Dr. Cohen pointed out that my heart rate did go up over 30 bpm (the requirement for POTS). He put me on a Zio Patch heart monitor for more information. He wouldn't diagnose me without more info, and after seeing the results of the Zio Patch he said I needed to see a cardiologist. My plan was to travel again to see a cardiologist familiar with POTS. My POTS support group said they didn't like Dr. Cohen because he wouldn't diagnose them, but honestly, I really liked Dr. Cohen. He gave me the tests I needed for an accurate assessment, and he was careful and thoughtful. I'm not upset that he wouldn't diagnose me, because I have better information for the diagnosis from someone else because of what he did for me.

I ended up finding a Cardiologist here in Bismarck that is familiar with POTS. I was really surprised by him, and I'm fairly certain he's the only cardiologist locally that is familiar with POTS in adults. I did a lot of digging and asking around last year and couldn't find a doctor who was familiar, and I think this doctor might be new since my asking around. Dr. Stephen Boateng, D.O. at Sanford in Bismarck. I don't think he's an expert on dysautonomia, but he is a very good and careful doctor. I really like him. Dr. Boateng was able to look at all my testing and see the evidence of POTS. He was concerned with my high heart rates on the Zio Patch results, particularly one spike I had. He diagnosed me and had me try a beta blocker: Metoprolol ER 25 mg. In short, it both worked and made me worse at the same time, so he took me off it. I plan to explain this in another post (or this one will get too bulky.)

What is POTS? This explains:





Endometriosis story:

Before seeing him, I went to a gynecologist at Sanford to discuss all my menstrual issues. 2 months of bleeding heavy every day, abnormally long PMS, extra pain... you get the idea. This wasn't the first time I've tried gynecology. Last time, about 4 years ago, I went to a very experienced doctor that I really liked, but she retired just a couple of months ago and I wasn't able to return to her. I initially saw her because I had a MRSA abscess on my vulva - and before you freak out and wonder what I was doing to get it there I can explain. A family member had MRSA who I was taking care of. I probably didn't wash up often enough. Anyway, she helped me recover from the abscess, but did other gynecological tests while I was seeing her. She told me I needed to consider a laprascopy to look for endometriosis, but warned me about the cost. My insurance would not cover the cost, so I decided against doing it. In retrospect, I really wish I had done it then instead of waiting until now. Why? Because I was worse back then and I would really like to know just how much worse I was - I'm fairly certain my naturopathic doctor and acupuncturists have helped me recover from most of my endometriosis before I had the surgery. But the fact of the matter is that I still have endometriosis, and it's officially diagnosed now.

This new gynecologist I saw first had me get an ultrasound, and it showed a few cysts on my ovaries where I have complained about pain. She said a laparoscopy was a very reasonable next step, and so I finally decided it was time to just have it done. I think I'll write a different post about the surgery itself, because I think I can share a lot that will help those of you considering having it done. Especially those of you with chemical sensitivities. I had problems,  I went through 3-4 IVs, but I believe it was worth it. My doctor said she found a lot of scar tissue, probably evidence of past endometriosis. I had endo in a few places that she was able to burn out of me, but I had some on my ovary (the one causing me pain) and she couldn't remove all of it without damaging the ovary. She said she burned it though. I had to have 3 incisions, and now for 2 weeks I've been nursing my belly and trying to let it heal. I'll share photos in the next post where I go into detail. My post-op is in a few days, and we'll discuss treatment options. Endometriosis is a life long illness that will have to be managed.

What is Endometriosis? This video explains:
https://www.youtube.com/watch?v=yM88T1R8HD4

(Blogger doesn't let me embed all videos on youtube - so I had to link to this one.)

Between recovering from surgery and going on a beta blocker for 8 days that made me worse in some ways, it's been a difficult time for me. Very difficult. And our finances are scary bad now. But I'm glad I went through all of this. I'm glad to have official diagnoses, and I'm glad to have this on my record in case I need more medical help - especially in emergency situations. No more arguing with doctors, they can just look at my records and see I'm not a psychopathic hypochondriac. That alone is worth everything I've been through!

Power of Doing Your Face

I just went through a rather long and particularly symptomatic PMS. Normally at this time I start to feel a ton of relief from all that, but I didn't take my pills for 1.5 weeks and I'm only taking the bare minimum to get by for the last 3 days. My face has become a total disaster through this. Very dry acne ridden skin with mild rashes, and total lack of color. It's still that way, even though it should be recovering well by this point, but I'm still just as dehydrated and exhausted from my lack of pills.

Want to see a cool trick?



I painted concealer on one eye and not the other, can you tell which one?

My camera doesn't do the best job with capturing details, so I look better here than the mirror showed me. But you can see what I'm talking about.

That's the power of make up. I do this every time I need to go out so that people treat me normally. I don't want people to think, "Oh, she's not looking her best." or "Is she on something?" I've learned that people treat you with less esteem when you look like you're not feeling well. They can treat you like you need extra care, that you're not as high functioning as other "normal" people, or like you're someone who does drugs and they show less trust in you. I've experienced it. When I wear my make up people treat me normally, like they don't need to treat me any differently from the next high functioning person. I'm not accusing everyone of doing this, but many do.

So I wear make up. I did it quickly without much detail work, put on a thin layer, skipped the lip products so I could eat, and used copper eye shadow to blend in the redness if it starts to show through:



Just think about how you treat people based on how well they took care of their face that day. Thanks. :)

Adrenal Fatigue Test Results

I wasn't planning to take a long break from blogging, especially since I have two two drafts for posts started that I need to finish. I've just had a really rough year so far.

My adrenals are so bad. I knew it, but I didn't have specifics. I really needed an official adrenal test done, so I bought a Diagnostechs 4 point cortisol and DHEA test when it was on sale for $120.

To test how my body is actually functioning on its own I had to go without supplements for 2 weeks so that nothing that affects cortisol would affect my test results. I only made it 3 days before I felt extremely sick without my supplements. I couldn't tolerate it. So I went a head and did the test on the 3rd day. Want to see my results? (Click on the picture to view full size if you're struggling to read it.)


I'm very low, very low, low, slightly high. According to Stop The Thyroid Madness, cortisol should be at the top of the range in the morning, upper part of the range at noon, middle of range in the afternoon, and at the absolute bottom at night.

The problem with this test is that I turned out to be abnormally exhausted - I actually fell asleep that night without herbs. That's normally impossible for me. I know that my cortisol is usually too high at night between what my doctor has told me and how I feel, but here it's only slightly high.

My DHEA is also very low. I thought I was getting measured in the morning and afternoon, but they only measured my afternoon value. If they measured it in the morning, and if their afternoon "normal" range didn't go so low (normal doesn't necessarily mean well or optimal in labs), the chart would show me in box 8. I'm so close to box 8 as it is.

No, I refuse to take DHEA supplements. They might make me feel good while on them, but they will ruin my body's ability to make its own DHEA. It will mess me up in the long term. It also can convert into extra estrogen, which I do not want. Not worth it!

Stop the Thyroid Madness has a great page explaining the stages of adrenal fatigue. According to this I'm probably in about stage 5, despite my DHEA being so low. I have A LOT of healing left to do, but I'm better than I was 3 years ago. I was bedridden then!

The hardest part about taking this test was trying to recover from 3 days without supplements. It took me about 3 weeks to stabilize again. I was miserable, dropping everything, fighting insomnia, not able to form energy during the day, getting rashes and stomach aches, fighting brain fog... it was not easy. Acupuncture helped the most to calm me back down.

Life has also been really stressful! One of coritsol's jobs is to eat up adrenaline so that adrenaline doesn't do damage. I don't have enough cortisol, so I create adrenaline too easily and can't control it. This is why I have very little tolerance for stress: stress causes adrenaline that I can't control, and the adrenaline physically hurts. This week I had to work every day of the week (co-worker had the flu, so I was covering) when I normally only work 3-4 days a week, my husband needed to prepare for a business trip that required some complicated planning, and I had to file taxes. I had really bad insomnia the night before last, which left me very fried. I say "fried" because I seriously felt like I had electricity flowing through me. Totally frazzled! Last night I did sleep, but woke up at 5 am with the feeling of electric currents flowing through me again. The only way for me to sleep well again is to have a few days without any stress so my body can stabilize.

Adrenal fatigue is no joke! I have to manage it very carefully every day. I have to take extra adrenal supplements during stressful times, so I must be very in-tune with my body.

When I am very adrenal, normally mornings, I feel very tired with jello-like muscles, wired and on high alert, shaky so I drop things all the time, very clumsy, low blood pressure with high heart rate, hypoglycemic if I haven't taken care of myself to avoid low blood sugar, unable to take a deep satisfying breath, paranoid and anxious, irritated and extremely focused on one thing or unable to focus on anything, angry, and unable to escape danger. This list fits me really well:





As you can see, this isn't easy. It's very difficult to manage adrenal fatigue, and it's stressful to keep up with what I need to do to manage it.

What do I do to treat? Well what I have been doing has obviously been working since I've improved in the last 3 years, but it's working very slowly. I'm also worried I'm regressing. I would like to improve my protocol, but I'm not sure what is right for me. I simply just need to see my doctor in person. What I am doing is taking adrenal cortex (which adds coritisol to the body), high dose of vitamin b5, a few herbs like cordyceps, and licorice root (I have low blood pressure so I'm able to take licorice root.) I also have to avoid stress and caffeine like they're poison. I didn't work for a year and a half, and that's when I did my best healing. Since working for the last 2 years (even at 12-15 hours a week) I've stopped making progress, and I've had to drink some caffeine to make it through shifts. I also have to address my high night cortisol by taking tons of relaxing herbs to literally overpower my adrenals (I take about 12-15 pills a night.)

A support group with nurses and "experts" told me my cortisol is so low I should go on hydrocortisone, which would mean adding actual cortisol to my body. I know this works well for many patients, but it's not without risk. It also has to be prescribed, and I don't have insurance. They said if I continue to treat with adrenal cortex I'll need to raise my dose substantially - they said I'm not taking nearly enough to make a difference. That will get expensive. I don't know if they're right or not, but I do know that I need to change something so I can make progress while working. Quitting my job is not an option (unless someone would like to pay me to stay at home, but even then I'm good friends with my co-workers and enjoy the social aspect, which is important.)

I'm stressing myself out just writing this post! It's too much to deal with.

So I know there's a few posts that I've promised to write. Please be patient with me. I'm having a rough time. I expect that once spring arrives and I can go for walks outside again that I'll start to feel better. This has been a really rough stressful winter (36" of snow within two consecutive weekends!)

And, if you get time, please read this post written by a doctor with chronic illness: https://themighty.com/2017/02/doctor-with-chronic-illness-things-to-know/

Iron and Acne

What an obnoxious winter so far! We've had about 60" of snow in just over a month. It's been a blizzard almost every Monday! Between the snow blowing, shoveling, roof raking, salting, being unable to leave the driveway for days waiting for snow plows to free our street, and trying to get hours in at work... you get the picture, between all of this I've been rather burnt out and exhausted. It's been actually very hard for me to even move some days due to the burn out. Instead of working on Part 3 of my mattress series, which I'll finish up soonish, I'm going to write about something a little easier: iron and acne.

My naturopathic doctor had me start taking pasture raised liver capsules 3x a day about a month ago. He wanted me to simply try eating liver first, but my tongue couldn't handle it and it made my stomach churn a bit. If you can tolerate liver, more power to you! The reason for the liver is to raise my iron level. Without telling him, I tried taking Black Strap Molasses with 29 mg of elemental iron. I've tried taking iron in the past during my teen years and it did help me feel way more stable and in control, so I decided to try it again to see what would happen. What happened was that I didn't feel any different at all (except for a little sugar high at times, and my yeast issues increased), but my lab values showed much better numbers:

End of 2015, Iron at 66:



If you go by Stop The Thyroid Madness's book/ support group, I was too low:




So after one month on those iron pills, my iron and CBC looked better than ever (almost everything was actually in range for the first time in years):



According to Stop the Thyroid Madness, my labs still are not optimal here, but they look much better.

My doctor received this lab and sounded a bit confused, and I told him I was on the iron. He wasn't happy with me. And THIS is why you listen to your doctor! He explained that I was "pushing" my iron without all the co-factors, which I understand to mean is disruptive to other minerals and nutrients in my body. He said if I'm going to push my iron I need to do it with all the co-factors, and the best way to do that is to take pasture-raised liver.

I've been on the liver for a little more than a month, but I have not had new labs drawn yet. I would like to do so soon so I can see what is happening. What I can tell you is that it's working. Taking the iron pills did not change how I felt. Taking the liver is changing how I feel. I haven't felt anemic and faint since taking them! I've felt weak from not being able to breathe well, low blood sugar, and maybe even low blood volume, but not the anemia-like weakness. I feel strong even while fatigued and exhausted. I'm not used to feeling strength below the tired.

There have been plenty of side effects, though. The liver pills are certainly stirring up my liver, which is not in great condition. I've had lots of rashes, acne, nasty prolonged PMS, and a much heavier period. This makes sense considering the liver does help make sex hormones. It also is the first detoxer in the body. My stirred up liver is pushing toxins out through my skin, causing the rashes and acne. Add hormone issues to acne issues and I get super acne issues. It's not been fun. The majority of this acne has been under my jaw near lymph nodes, which also makes sense to me.

So what do I do about acne? What helps?

STOP EATING SUGAR! Sugar does nothing positive for the body, only negative. It's highly acidic, makes the pancreas and liver work overtime, feeds bad bacteria and yeasts, feeds infections, penetrates a weak gut lining, usually goes right into fat storage, causes hormonal imbalances... and the body tries to detox it through the skin.

Figure out your food intolerances. For me, dairy and grains both gave me acne and I didn't figure that out until I first went gluten free for a year, then dairy free for a while. My skin improved so much. Then I met my doctor, who had me cut all starches, grains, dairy, sugar, moldy foods, and nightshades.  I stopped getting acne except around my period, and it cleared up very quickly after my period started.

Okay, got those down? Good, now what to do about acne that defies preventative causes:

Aztec Indian Healing Clay mixed with Bragg's Apple Cider Vinegar as a mask:

The darker areas are where it went on heavier. I simply pour about a quarter sized amount of clay in to my palm then pour just enough vinegar in my palm to make it fizz and turn into paste. Then I rub the paste in my hands and spread it all over my face and neck. I let it sit for 20 minutes, then typically shower to wash it off, but a wet warm cloth to scrub it off will do. It pulses my skin in the process, and after I wash it off it feels like my skin is breathing. The vinegar leaves my skin pink/ red for about 20 minutes, then my skin looks so refreshed! This stuff sucks junk out of pours with a magnetic bond. It feels amazing. The vinegar feeds the skin nutrients and kills bad bacteria. I love this stuff.

Note: French Green Clay is supposed to be the best kind of clay for acne, but I haven't tried it.

Desert Essence Blemish Stick

This is one that I reserve for bigger, more painful acne that I want to get rid of faster. It does work well, but it's a bit drying and irritating to my skin. It features tea tree (and this brand makes a high quality trustworth tea tree, it's not a knock-off or low quality version that other brands use.) Tea Tree is antibacterial and it does help clear up rashes and acne for me. I use this brand's tea tree soap for rashes. It does work, I just have to be careful not to over do it.

Badger Balm Beauty Balm

I'm a huuuuugggeeee fan of Badger Balm products in general. They're mostly organic and use safe low doses of extracts and essential oils that are strictly for a purpose, not a fragrance. I can't tolerate their orange oils, but I've done very well with all their other aromatherapy products, when I don't tolerate many essential oils in general. I typically stick to their unscented line anyway since I don't care for fragrances anymore, even when I don't react to them.

This beauty balm is ultra moisturizing, but doesn't clog pores. It has seabuckthorn, an oil known for healing skin blemishes. I find that this balm is anti-itch, soothing, cooling, very moisturizing, and noticeably healing. I when I'm broken out I use it as my face moisturizer, let it soak in for 15 minutes, then apply my Lauren Brookes Cosmetiques or Mineral Fusion make up.


Organic India's Amalaki
Make sure you're getting enough real whole food vitamin C. I really like Organic India's Amalaki, which is rick in vitamin C and has the ability to pull out oestrogens. Basic abscorbic acid (what's used for "vitamin C" in synthetics) is often made from mold, yeast, or with high VOC chemicals like formaldehyde. It's also incomplete - it needs bioflavanoids to complete the vitamin C, so why not just take a whole food version that doesn't have to be reconstructed?

I keep reading about Camu Camu being a great source of vitamin C too, but I like the alma berry (Amalaki) better because it has the oestrogen balancing effect.


Additionally:

• Eat your fats: drink bone broth, eat coconut oil, drink collagen, eat gelatin, eat the fattiest cut of steak, eat avocados, use real butter, etc. Your skin and brain need good healthy fats in order to function. Make sure you're feeding yourself what your skin needs.
• Drink organic fair trade green tea (certifications are important since non-organic green tea can contain high amounts of fluoride, aluminum, and pesticides.) It's a natural antioxidant. Then press the used wet green tea bag against your acne!
• Get chiropractic adjustments. Freeing up nerves that can't communicate well due to a spine that's out of alignment can significantly increase circulation in your body, and better blood flow means faster healing.
• Use a pimple popping tool for the ones that are ready to pop. In my experience, popping the ones that are ready with this tool doesn't leave scarring or bleeding.

Let me know in the comments if you have more good advice!

New Blood Sugar Meter

Do you know that feeling where your body is feeling stimulated and it wants to move, but you're feeling very spacey and internally fatigued to the point where it's hard to focus your vision on anything? Yeah, me too. I thought this was due to low blood sugar (because I can get hypoglycemic easily if I don't eat correctly,) but as it turns out, it's not. It makes sense, because when I'm actually low in blood sugar I have a whole host of other symptoms. My blood sugar can be over 120 and I still feel this way. I think it's my thyroid and adrenals actually causing this problem. That's another issue.

I finally bought a blood sugar monitor for home use. What I'm learning is that I start to get spacey, brain fogged, and extra fatigued when I'm below 95, either before or after eating a meal, but I can still use my body and function. I've tested around 80 when I've gone too long without food (meaning more than 2 hours), and I did feel drained and light headed during those times, to the point where it's hard to move if I want to. Most interestingly of all is the fact that I'm testing relatively highest first thing in the morning.  My morning blood sugar has almost always been above 115, once it was 127! Mornings are the messiest time of day for me. I typically wake up feeling groggy, then once I'm fully awake I typically feel loaded with adrenaline. I'm guessing my cortisol is high, but I really need to get a 24 hour cortisol test done to confirm that. What I do know is that my blood sugar is highest during those times. An hour or so after breakfast is when my blood sugar drops. It's not a struggle to keep it above 100 through the day IF I eat meat every 2 hours. When I don't eat meat this often I tend to stay in the lower 90's, even if I eat every 2 hours. My doctor is right, again. (He's the one having me eat protein every 2 hours.)

The other interesting issue I have is that I have a very difficult time getting enough blood for the reading when my blood sugar is low. I can hold my hands under hot water, jump up and down, shake my arms, and rub my arms down into my hands. It's very difficult to get enough blood after lancing myself. When my blood sugar is above 100, it's not even half as difficult to get a good amount of blood.

Which meter did I buy? The best looking one on the shelf - I didn't really research it ahead of time. Let me tell you a quick story first:

I went out and finally bought the monitor based on a really scary situation I had a couple of weeks ago. I was PMSing like something terrible. My sugar craving was out of control. I ended up eating an entire bag of organic dried apple and bananas with cinnamon. In one sitting. It was about 50 mg of sugar in that bag. I haven't done anything like that in the last 3 years on this diet! I've splurged on 85% dark chocolate bars, but I think the caffeine affected me more than the sugar. This was the first time I've had this kind of binge on a high sugar food. I felt jittery and stimulated for about an hour and even had a headache some of that time. Then I sat down with my husband and started laughing about something with him. Mid laughing I crashed. HARD. All the energy drained from me, my right arm went completely numb and I couldn't move it, my heart started palpating down into my stomach, I couldn't see straight or focus on anything, and I started crying uncontrollably while struggling to take breaths. My husband thought I was having a stroke, and he told me I got very pale white. My husband gave me some apple juice. It did help. It took about 5 minutes to start improving, about 30 minutes to feel recovered enough to eat lots of jerky. My biggest problem is that eating sugar makes my blood sugar drop too much, and this case I ate wwwaaaayyyy too much sugar. This was definitely a hypoglycemic/ adrenal crash.

This scared me so much that I went to CVS the next chance I had to buy a glucose meter. After talking to the pharmacist and reading all the boxes, I decided on the CVS Advanced Glucose Meter. The reason is because the test strips are affordable. $12 for 50 and I can buy them without insurance. The pharmacist convinced me it's accurate enough and is easiest to use. I've never used a meter before, so I have nothing to compare it to outside of labs at the hospital.

What I like about this one:
-The fact that it tells me my blood sugar level at home.
-Easy to use, very intuitive
-Large memory bank for my readings

What I don't like about this one:
-I tend to go through about 5 strips before it gives me a reading and not an error message. Part of the problem is that I have a hard time getting enough blood to squeeze out of my fingers, and this meter doesn't need much blood. The main problem is that this machine is very finicky. I read some reviews on the machine and tons of people said that it's accurate enough and the strips are cheap, but they too gets lots of error messages. It's so much fun having to lance myself 3-5 times just to get one reading. Sigh.

-It doesn't come with the specific USB cable needed to upload my results to my computer. Not just any USB cable will work. I had to call CVS customer service, sit on hold for 20 minutes, and request they send me a free cable in the mail. No, you can't just go to CVS and get a cable. No, it doesn't come with the cable. You must call them and ask them to send it to you for free. I'm rolling my eyes about this.

-I question the results a little bit. I don't have confidence in its accuracy. The few times I've retested myself immediately after the first test I got a different reading, usually within 5 points of the first reading. That's not a big deal. Once I had a reading of 122, then when I retested I was 111. That big of a difference bothers me.


Anyway, I want to go take a nice hot bath now. :)

Sleep!

After an awful night of "sleep" I thought I might say something important:

Working myself to exhaustion DOES NOT make me sleepy. I won't get tired enough to sleep by simply doing more work to "tire myself out."

A healthy person should get more tired by extra work, so it's very easy for healthy people to suggest to those of us with insomnia or sleep issues to simply wear our selves out to make us tired. They mean well, but they don't understand. I worked 18 hours on my feet this past week, attended a large event where I had to stand for an hour, went for a couple of walks with a friend and my husband, did extra chores around the house, hosted a dinner at my house for my parents, and more. I did double what I'm normally capable of this week, and I'm very much paying for it now. I'm very tired, in desperate need of recovery. But I'm not sleepy.

I usually start to wake up and feel better at about 10 pm, when I feel like my body decides to start producing energy, finally. It doesn't matter how hard of a day it was, how little sleep I got the night before, or how tired I feel up to 10 pm. My brain turns on at night, and I often feel like I could get up and do an easy Xbox Fitness program. Sometimes I actually do have to at least do some jumping jacks and lift a few weights in order to get ready for bed, otherwise I can feel too restless. Where's that energy during the day when I need it!?

Last night was terrible. Absolutely annoying. After dinner I used my far infrared sauna for an hour, which is very calming, usually, and then drank water with my doctor's CalmING powder that is designed to calm anxiety and adrenaline. A little later I drank Nighty Night tea, a tea for inducing sleep. It had zero effect on me, when it normally does bring a wave of a tired feeling. Then I rubbed in my nightly dose of progesterone cream, which tends to have a relaxed calming effect. I then took my sleep pills: an herbal and magnesium blend from my doctor, a ziziphus blend from my doctor, phosphatidylserine with choline and inositol, organically grown valerian root, Organic India's Peaceful Sleep, and 6 mg of melatonin.  Multiple pills of each of these. This combo is usually just enough to knock me out so I can sleep, and once I'm asleep I typically sleep well on a normal night. Last night, all of these pills didn't work. They didn't phase me.

I laid in bed for hours with very agitated thoughts, high anxiety, and fibromyalgia flares flowing through my legs and arms. My thoughts drifted in and out of dreams, so I could tell my body was trying to sleep, but I kept waking up from the annoyance of my dreams. The "dreams" were very high strung, full of problems, social tension issues, anxiety about getting somewhere on time, etc. I tossed and turned a lot, and at several points considered getting up and avoiding the bed for the rest of the night to avoid the torment.

The worst part was feeling my heart beating with such high intensity ALL night long. Every time I woke up I could feel my heart hitting the mattress like a punching bag. I practiced some deep breathing techniques to calm my heart, but it actually only made my heart beat harder, like I was working out.

Please understand, I spend a lot of time and money on remedies to get me to sleep. If I don't take enough of them, my adrenal glands won't shut off at night and keep me awake. I must overpower my adrenals to sleep.

But last night wasn't a normal night. This was PMS induced, and therefore there may not have been any combination of pills that would have worked for me.

The problem with PMS and my menstrual cycle is that my level of stress through the month seems to have a direct consequence on how intense it's going to be. The more I take on and exhaust myself, the more agitation and irritability during PMS. This month I was too active - I had way more stress than I wanted, more hours at work than I should take, and too many side projects I shouldn't have worried about. I'm paying harshly for it, and I cannot allow this to be normal. I MUST back off and lessen my level of stress.

Let me leave you with this article about the dangers of lacking sleep. I can't stress enough how important sleep is to our entire life - we cannot afford to skip it to get more work done in our life:

https://www.psychologytoday.com/blog/sleep-newzzz/201603/the-social-and-behavioral-costs-sleeplessness?utm_source=FacebookPost&utm_medium=FBPost&utm_campaign=FBPost

Toxic Consumerism: Is Voting With Your Dollars Enough?

I am gradually meeting more and more people in person who tell me they suffer reactions from certain synthetic products. I know of someone who only reacts to candles, even unlit candles, and it's enough to give her a migraine and agitation. A stranger told me she can't smell perfume without getting queasy, and she told me this without knowing I have sensitives too. Another man chose me to complain to about cigarette smoke making him feel awful. Someone else even showed me their rash and told me it started after using a cheap heavily scented laundry detergent. I'm happy to be meeting these people, because what it is telling me is that people who don't have MCS are experiencing reactions to many common synthetic products on the market - and they're complaining about it! They're fully aware of which products hurt them.

We are in need of a major cultural change. More and more consumers are choosing non-toxic products for several reasons: their own health, the health of the workers who made the products, fair trade/ ethics, avoiding worsening global warming, or even out of distrust for questionable ingredients in products. Non-toxic products are boasting that they're safer, more sustainable, create less waste, do not pollute our air, and they're more sturdy (better value)... all for only a slightly higher price tag. I see the tide turning, and there are more and more brands producing non-toxic options. The majority of consumers, however, are not conscientious shoppers. Most people are still going to buy cheap plastic disposables made in a sweat shop with child labor, not because they don't care, but because it's normal and most affordable.

Here is where I struggle. As a sales person who is very passionate about and deeply believes in everyone switching to non-toxic products, I have no problem educating customers to convince them to spend the extra money on something safer and more sustainable. I get very irritated when customers are educated and STILL choose to buy the toxic option - what will it take to convince them that they're not just hurting themselves with that choice, but they're hurting the people around them? When I'm not at work, I can quickly and easily become the annoying idealist who comes across as being very judgmental about other people's choices. I struggle with this, because I see it as a moral dilemma. I feel morally obligated to warn people against using toxic products, because I know from personal experience and from reading the scientific studies that and from meeting MANY other people who have been hurt those products hurt people. I fear for the health of my fellow human beings - am I wrong to try and protect others? Well, I can't control other people's choices, and I don't want to. I believe in free choice. I don't blame the consumers. I blame the terrible health regulations in this country and many other countries around the world.

The problem is that companies are allowed to use untested unregulated synthetic (not found in nature) chemicals in their products and then sell them to people who trust that these companies aren't allowed to produce products that hurt people. How do you convince consumers that these products aren't actually safe? They have to want to be convinced - they have to be open to making a change in their own life. Most people don't have the time or energy to research and learn about consumer product safety, if they even know it's an issue. Many consumers who have heard warnings against certain products might fall prey to marketing schemes that make them think they're making a safer, healthier purchase (when in reality that product is not safe.) This is a major issue with BPA-free plastic water bottles. The "BPA-free" sticker makes it sound like it's safe, but the problem is that the BPA alternative in plastic hasn't been proven safe. In fact, there's been studies to show that the alternative is just as endocrine disruptive as the BPA! No, consumers are not to blame.

One comment I see very often on Facebook is, "Vote with your dollars!" This means that consumers demonstrate what kind of culture, environment, and standards we want in our country based on what we choose to buy. There's plenty of truth in this statement. This sentiment is why there are more and more companies choosing to produce organic food products. For instance, Hormel saw the success of Applegate (natural and organic packaged meat brand) and choose to buy them. Hormel is seeing that a very large portion of consumers prefer organic and natural products, so they wanted in on the market.

I don't believe that the "Vote with your dollars!" plan is enough. It's tackling the issue from only one side, and the other side of the issue is a bigger problem. The other side of the issue is the total lack of safety regulations and standards for consumer products. Until that changes, too many consumers will keep buying the cheap, toxic products (knowing or unknowingly) - and these people are voting with their dollars too. As it is, more people are voting with their dollars that toxic products are acceptable. We need to fight for better safety regulations, demand third party testing on synthetic chemicals, and demand that companies stop using overseas child labor. We do this by voting, writing our senators and congressmen, and funding more research projects.

The Trans Pacific Partnership (TPP) is a great example of something that needs to be voted on. It's being discussed and voted on in many countries, but have you noticed that the media here in the USA is refusing to talk about it? The idea is that is allows faster, more direct trade between countries in order to boost the economy and create better trade relations with these other countries. The problems? It means LESS product safety regulation and fewer products being made in the USA (meaning less jobs too). In a time when China has been caught bleaching garlic that goes for sale in the USA, making fake rice from plastic and mixing it with real rice that gets sold in the USA, processing meat with carbon dioxide so it looks fresh when it's already rotten, and more... why in the world would anyone trust China to ship us more products through the TPP that are SAFE? If anything, it will allow them to get away with even more safety risks since there would be LESS oversight! To my knowledge, Mike Huckabee was the only presidential candidate that actively protested the TPP. He is no longer in the race. Hillary Clinton, on the other hand, is a major supporter of the TPP. This is NOT a democrat/ republican issue - this is a moral human issue.

I believe in Capitalism. I believe in the right to make any business you want that's legal. I believe in the right of consumers to have free choice on what products and services they buy. I used to believe that less government involvement allowed for a better Capitalistic system. Then I started to learn that people cannot be trusted to make decisions that do not hurt people. I learned that businesses would choose to use toxic products just to make a dollar. I learned that businesses would move overseas, avoiding hiring USA citizens, just to improve income. I learned that businesses don't mind being ethically and morally ambiguous by using child labor in sweat camps and paying them next to nothing. If business leaders could be trusted to have the health, safety, and welfare of humanity at heart, I would still prefer a smaller government with less regulations. But I lost my trust. The only way I can see to hold businesses accountable is through  government regulations. ...But what happens when our government can't be trusted to regulate? That's our current problem. The last amendment to the chemical safety law in this country actually made the law worse - we now have FEWER protections. The government is no different from the business. Our leaders are supporting immoral, unethical, poor trade agreements with businesses so they make maximum profits. Let me be clear: I am NOT against corporations. They're not evil, in fact, I think they're a fantastic way to build a business economy. I support many corporations with my dollars, because I like their mission, values, and how they conduct business. This is a matter of trust.

(This is not an endorsement of Bernie Sanders either - yes, he's the only candidate talking about these issues, which I really truly appreciate and respect, but I don't believe in his solutions. I fully understand if you vote for him based on his environmental values.)

If I had the energy, I would love to get into much more detail and give specifics. My energy is running low very quickly.

My dream is for the USA to be thriving on a safe, sustainable, non-toxic, democratic, capitalistic economy. I would love to see the elimination of child labor, sweat camps, meat factories, poor subsidized farming techniques that rely on GMOs and synthetic toxic chemicals, etc. I'm dreaming WAY too big, I know. My idealism is too grand. But as someone with "21st Century Syndrome" who is "allergic" to our modern lifestyle... I think I have very legit reasons to be this idealistic and to dream. I can't participate in this culture without getting sick.

I'd like to acknowledge a business who is actually concerned with product safety and sustainability: Lego! Yes, the plastic toy company! I'm a huge fan of Legos, and it broke my heart when I realized they're made from toxic non-biodegradable petroleum plastic. Apparently, it's bothering them too. They've vowed to switch to a new kind of non-toxic sustainable plastic! Thanks Lego! Continue to be a great example for other businesses and for consumers!

If you would like to do further research on the issue of the toxic consumer products, I encourage you to check out:

- Stink! Documentary

- The Human Experiment

- Toxic Hot Seat

- The Sensitives

- Tox-Sick by Suzanne Somers

- 12,000 Canaries Can't be Wrong by Dr. John Molot



Next time you go shopping, keep in mind that plastic is endocrine-disruptive (estrogen mimicking, insulin producing, and other hormone suppressing), is linked to obesity and diabetes, is not biodegradable, and has much safer alternatives. Consider buying the glass water bottle instead, and pass on the meat wrapped in plastic in favor of paper-wrapped meat from you butcher. Your water and meat will also taste so much better if you do this!

http://www.niehs.nih.gov/health/topics/agents/endocrine/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702426/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279464/

http://www.nydailynews.com/life-style/health/chemicals-plastic-linked-health-problems-study-article-1.2285790

Adrenal Fatigue

I'm very surprised to find out that I haven't actually blogged about adrenal fatigue yet, as it's something I'm constantly contending with. This time, however, I won't write much. I came across this article that describes me perfectly, especially the part that describes the symptoms:

Symptoms of adrenal fatigue:

• Morning fatigue -- You don't really seem to "wake up" until 10 a.m., even if you've been awake since 7 a.m.
• Afternoon "low" (feelings of sleepiness or clouded thinking) from 2 to 4 p.m.
• Burst of energy at 6 p.m. -- You finally feel better from your afternoon lull.
• Sleepiness at 9 to 10 p.m. -- However, you resist going to sleep.
• "Second wind" at 11 p.m. that lasts until about 1 a.m., when you finally go to sleep.
• Cravings for foods high in salt and fat
• Increased PMS or menopausal symptoms
• Mild depression
• Lack of energy
• Decreased ability to handle stress
• Muscular weakness
• Increased allergies
• Lightheadedness when getting up from a sitting or laying down position
• Decreased sex drive
• Frequent sighing
• Inability to handle foods high in potassium or carbohydrates unless they're combined with fats and protein

Yes, this is me - especially the frequent sighing part. :) It also explains my low blood pressure and low blood sugar, digestive issues, and menstrual issues. The adrenal glands produce and regulate hormones, and when the adrenals can't properly work with hormones, naturally our hormones will act up.

Adrenal fatigue and chronic fatigue syndrome tend to go hand-in-hand in my experience, and yet they are not the same thing. While I believe that adrenal fatigue does feed my chronic fatigue, do I believe that there are other causes to my chronic fatigue for reasons I've stated throughout this blog.

This article explains that "nervous breakdowns" are symptomatic of or cause adrenal fatigue. Yes, I did have a "nervous breakdown" that occurred right before I became chronically ill. It was actually on the incredibly overwhelmingly stressful move from Idaho to North Dakota, when my truck was breaking down from carrying too much weight. I was stuck, all alone, in the middle of western Montana, scared to death, not wanting to even do the move. I completely broke down. Ever since then I've been unable to recover my energy.

What do I do for my adrenal fatigue? I have a great naturopathic doctor. Sure, you can buy all sorts of herbal adrenal supplements at your local health food store, many of them even contain the same herbs that I take, but I'm not a doctor or a physician. I'm not going to give advice on what herbs or remedies to take. Now that said, 2 years of healing with my doctor and I still have a lot of these symptoms. Do not expect to heal quickly. This article says that for severe cases it can take up to 2 years to heal from adrenal fatigue. I definitely need more time, but I've made a lot of progress.

http://foodmatters.tv/articles-1/treating-chronic-fatigue-and-adrenal-fatigue-naturally




I can suggest lifestyle changes that have helped me a ton:

- Avoid caffeine!
- Avoid sugar!
- Avoid all stress, even if that means quitting your job. Stress will keep attacking your adrenal glands, preventing them from healing and possibly making them even worse. I couldn't work for almost 2 years. If I would have kept working, I couldn't heave healed. Getting away from all stress is an investment in your ability to work in the future.
- Get as much rest as possible. I have no shame in the fact that I've laid in bed for hours watching Hulu, playing my Nintendo DS, or reading. It makes me feel a lot better.
- Exercise enough to keep your circulation strong and to feel good, not enough to wear you out. I like to go for a 2.5 mile walk most days.
- Get acupuncture, chiropractic adjustments, and massages. These are very healing therapies, but they also are very relaxing. They will help eliminate stress.
- Spend time in the sun, which is very relaxing and invigorating.
- Do not ever "beat yourself up." It isn't your fault that you're sick.
- Pray. Let God heal you. Let him take your stress from you. Let him relax you and comfort you. Do not push him away. Do not get angry at him. If you resist him, you're holding onto stress unnecessarily. Even if you don't believe in God, try giving up your stress to him anyway - just the "letting go" will help.

Admitting the Problems

I want to write, but I'm not feeling focused at all. I've decided to let this post be my outlet of complaints about my struggles, but I don't want it to just be about me. Leave me comments, either here, Facebook, or Google+. Let's all pitch in and share our struggles. Sometimes what we need more than anything else is affirmations from others that what we are going through is horrible - that chronic illness and poor health is miserable and we all struggle with it uniquely. So please, join with me. Let's vent. I want to hear your struggles too!


1. Tea/ Caffeine. I LOVE green tea. I would drink it exclusively throughout the day if I could. The problem is, I'm very sensitive to caffeine. One mug of green tea is all I need to carry me through a 4-5 hour shift at work as if I'm a normal human being without chronic fatigue. If I drank a cup every day, like I want to, my adrenals would never heal, I'd never be able to truly rest, and I'd probably struggle even more with sleep. So I have to drink Yogi's organic decaf green tea on days that I don't work. It tastes half as good, and I know it's not as good for me. :(


2. PMS. I've rarely had mood problems with PMS my whole life. I would get horrible acne, bloating, sugar cravings, and inflammation, but my mood wasn't affected much outside of making me tired. The last two months have been totally opposite for me. It was PMS from hell both months. I found myself so angry for no reason that I couldn't hold a light conversation with people. I was raging in my dreams to the point that my anger woke me up in tears. I couldn't enjoy doing anything. Everything I did, even things I normally love, irritated the heck out of me. It wasn't possible to be me. I've had very little acne on my face, but weirdly, I've been getting it on my arms and legs. I was bloating a lot, but mostly in my breasts and not my gut - ouch! Last month my sugar cravings were really hard to combat, but this month I didn't have cravings at all. My body has become horribly unpredictable. Hormones! I never used to respect them since I didn't understand them, now I have a ton of respect for them since I understand their power.


3. Money. Yes, money. If we had enough, my problems could be solved. I wouldn't have to work, I could spend a lot more on treatments, I wouldn't feel constant suppressing damaging stress, we could buy a house without any MCS triggers, I could get away from the city and order all of my groceries online to be delivered, I could build a garden and raise a couple of cows for my meat, I could... wait. I'm just dreaming now. But seriously, MONEY. It's the reason I have to work, which definitely is ruining my ability to heal. It's the reason for 90% of my stress, which preventing me from healing. But what can I do when I don't qualify for disability (it's way too expensive to even try anyway)?


4. Responsibility. Responsibility outside of making money, that is. I'm really struggling to keep up. For instance, I failed to remember to renew my truck's registration and I was expired for about a month. I can hardly keep up with house cleaning. My poor birds didn't have clean cages for about 2 weeks. It's just too much for me! I'm not joking when I tell people I need a few days of doing nothing. I just can't create the energy to spend on everything that needs work. I give about 80% of my energy to my job, and the rest of my energy I need for cooking and buying food.

Staying on this topic, I just want to lament a bit. When I was in college I had no trouble at all staying on top of homework and classes, even as a full time student with a part time job. I even had the energy to survive all of this and go through a very rough and depressing break-up. I had the energy to get married and be a full time student with a part time job. And hang out with friends. And play video games. I was normal, and I thought nothing of it. Today, this would be impossible. I'd be in the hospital from being overspent after just one day. My life is behind me - what I'm experiencing now hardly feels like "me" at all.


5. The realization that I still don't fit in with the world. When I started working again a few months ago, I had the strong attitude of "I will do this on my terms." I didn't really have a choice, it was either on my terms or not at all, because I would get very sick if I did it any other way. I've never been like this before. Those of you who have worked with me before I broke down and got sick will remember that I was always flexible, open to change, responded very well to rules and orders, and willing to do whatever it took. My natural personality says to still be this way, but I can't be. I must protect my health at all costs. So getting "my way" means clashing with others. It means being demanding, controlling, and resistant. I hate being this way. It's not "me." I create a lot of stress from trying to always stay in control of every situation.


6. The realization that I'm not in control of my situation. I really need control in order to protect my health, but the truth is that I have very little. Customers reeking of perfume or cigarette smoke still walk in the door at work. The smoke in the air from the wild fires out west are hard on my health, but it also traps perfumes and laundry fragrances in the air, making the air quality outside especially hazardous for me. I don't always have access to the food I need, and my needs are specific. My body does what it wants to even when I do everything right. I can get hit with fatigue even after lots of rest and eating and supplementing perfectly. My PMS can be out of control even when I didn't change anything. My legs can cramp up without provocation. I'm not in control at all. I'm constantly responding to every situation to make it as good as possible.


7. I don't even know what I love to do anymore. If I had energy, I would love to sew my own clothes again. If I had energy, I would love to finish writing a novel I've started. If I had energy, I would work out every day and create a rockin' body. If I had energy, I'd probably become a Faith Formation teacher at church. If I had energy, I'd love to maintain a big garden. If I had energy, I'd probably go back to school to become a health coach. If I had energy, I'd work more so my husband could work less. If I had money and energy, I'd travel a lot more often with my husband. But since I don't have energy and money, what do I love to do? I know that I love to lose myself in a great story, whether it's a book, manga, video game, TV show, movie... whatever. But that's not exactly doing. What do I love to do with the energy I do have? I don't know. I'm bored pretty often, but I just accept it and play video games, because frankly, I'm struggling to change it. I'm struggling to find the energy to actually do. I've already given up on my great life goal: having and raising children. When will this ever happen? My husband and I are getting older, and I see years of recovery ahead of me.


Okay, your turn!