Managing Adrenal Insufficiency

So, now that my ME is under control by applying the things I learned from Reverse Therapy (RT) there remains the adrenal issue.

The ME is gone, I’m in recovery. The past three months I no longer had the Wired & Tired and general “I’m so dead why am I still breathing?” feelings that go with ME.
But I did have the consistent nausea, especially in the evenings, and I did have to pace myself severely. I even had an adrenal slip up on March the 5th. When I was in a new surroundings, was too cold, had been upright for 5 hours on end and was too stressed.
I started crying uncontrollably which is an alarm signal from my body that I need to make it safe asap or otherwise an adrenal crisis is in the works. It’s a scary route.

I cried. Took my pills. Took a long lie down in the car. Then drove home and went to bed. Took three days of rest.

Me resting in my car. I was wearing my hand felted princess dress and handknit socks. You should always be warm. And being wrapped in wool gives you a feeling of safety.

I’m not too good in the RT thing yet, I have to practice over and over again to relax, feel safe, and calm down the nervous system. But I’m well enough now to address the adrenal thing.

That’s why I had a battery of blood tests done, talked to my GP and had a consultancy with Adrenal expert Dusty Hardman from AddisonsSupport.com.

Dusty is not a doctor and will not make any decisions for you. But to the educated patient she’s a welcome sparring partner with lots of experience and knowledge. She herself has Addison’s and runs marathons -even wild ones, which lasts days and days- and researches Addisons’ medical info.

The blood tests were: hormones, electrolytes and more hormones.
My primary goal was, for both GP and Dusty, to find out whether I was wrecking things the way I’ve been supplying Hydrocortison until now. Secondary was to learn how to improve my protocol.

The risks of long term corticosteroid use involve loss of bone density; getting too high eye ball pressure and some other scary things. There’s also suppression of residue adrenal function, if you take too much.
When your adrenals cannot produce cortisol when you need it, say in an emergency like a trauma or dehydration, you run the risk of death. Quite quickly too.

As Pathology Personified illustrates it:

when vomiting twice, call the emergency services. Addisonian crisis is life threatening.

When vomiting twice, call the emergency services. Addisonian crisis is life threatening.

Addisonian Crisis: Medical emergency
14. Severe vomitting
15. Severe chest, abdominal pains
16. Back pain
17. Severe diarrhea
18. Syncope, fainting

Refs: 1-13 Merck Manual 18th Ed (2006); 1-4 Souhami & Moxham ‘Textbook of Medicine’ 4th ed (2002); 1,2,8,13 Goodman & Snyder ‘Differential Diagnosis for Physical Therapists’ 4th Ed (2007); 1-15, 12 Gray & Toghill ‘Symptoms & Signs of Clinical Medicine’ (2001); 1-3,7,14,15,18 Ballinger & Patchett ‘Saunders Pocket Essentials of Clinical Medicine’ 3rd Ed (2004)

But I haven’t had an Addisonian crisis yet. I’m still in the process of determining how my system is doing.

The electrolytes showed that calcium-magnesium was ok-ish but low on magnesium. Natrium-kalium was perfect. My kidneys are troopers!
I’m having a bone density scan done soon (DEXA) to tell me more about the bone density. In the mean time I have started to do weight bearing exercises. It’s the only thing left to do at my age.

Don’t go taking calcium enriched supplements!
You’ll only put your bone-cells into overdrive and exhaust them before you’re old. Have you never wondered why the country that drinks the most milk, the Netherlands, has the highest portion of osteoporosis? Calcium from dairy is bad for you. Lies:

This is all lies!
Don’t eat so much calcium. At least fill up on Magnesium if you do take some calcium. It’s such an easy and unlogical assumption to think that because your bone is brittle and it’s made from calcium you need to take more calcium.

My GP taught me about a complicating factor: that the bone cells needs vit D receptors and these decline with age. You should have maximum receptors at age 30 because after that they dwindle and cannot help your brittle ass enough.
I asked whether I was perhaps lowering my amount of vit D receptors with the large amount of vit D I take. Just like you lower the amount of Progesteron receptors when readily supplementing. He found it an intelligent question.

The eye-thing has been checked by an optometrist and the eyeball pressure will be checked in two weeks by an opthmologist.

The hormone ACTH is the hormone the brain releases to get the adrenals to produce cortisol. My value is 19 in a reference scale running from 0 to 50.
With my supplementation of 20 mg of Hydrocortison my brain is still asking my adrenals to put out more cortisol. Hence: my brain has not shut down my adrenals. And: my adrenals/supplementation do not provide my body with enough cortisol.

Not enough cortisol also explains my residu symptoms:
– nausea (not enough stomach acidity. Not enough HCL in the world to help with this)
– not able to make choices. See last posts. Who’d knew this was a symptom?!
– crying inappropriately
– dropping blood pressure
– losing words when tired. I especially lose my Dutch nouns and verbs. English ones pop up instead.
These are all adrenal symptoms.

My blood work showed I don’t supplement cortisol enough. There seems to be no damage with the supplementing I’ve done so far.

Talking to Dusty and reading everything on her site has given me a new look towards Addison’s. Doctors still know very little about it. And what they know they haven’t thought through very well it seems. They are so scared of suppressing adrenal function that they rather have people on too low a dose, causing them to have a poor quality of life.
Whenever someone needs an acute higher dose they linger to give it to them, wrecking their body unneccessarily.

I have educated myself and have started a trial of higher cortisol replacement. I’ve upped my dose, with blessing from my GP. And boy, do I feel alive!

pic by St.Mattox

Suddenly the quality of my life has shot up. I’m nowhere where a healthy person is, who runs after the children or doesn’t think twice about getting some groceries before cooking dinner.
But I can take a shower when I feel like it. Not make it the one thing I do on a day.
I’ve just been outside, puttering about in the garden. It’s a gorgeous Spring day out there! I came inside and sat down to write this post, I didn’t have to lie down first.

I’m now on 25 mg HC per day. And I’m going to up it to 30 mc because over the past few days I needed to stress dose each and every day because one day we were taking a drive of 1.5 hours. The next day the optometrist was about to put painful drops in my eyes which would annoy my body for three days. The day after I had stomach pains. And today I worked in the garden.

These are all activities/events that require a little bit of cortisol extra.

Yesterday I was hormonal. I was cranky, weepy and aggressive. Looking at the calendar I saw it was ovulation day. I never have these symptoms on this day. At best I can muster up a little bit of arousal but overal I’m a very tame woman.

With the upped HC I am pouring extra hormones into the adrenal hormone cascade. Less of my Progesteron is needed to make cortisol and it’s probable that it flows into Estrogen and Testosteron production. (Test. was low in the blood test btw)

I took extra Progesteron to counter it. Problem solved.

This HRT is all a delicate dance. Luckily I supplement physiological doses so anything I overdo or underdo leaves the system within a day. And I’ve danced with my Progesteron and Estrogen for a few years now, all the HRT things I learned from that I get to apply to cortisol replacement.

Lots of things happening, in just these 5 days since my trial started. For example I also noticed that my thyroid is picking up. I had it tested too and it is within range but not optimal. Which explain the residu thyroid symptoms I had:
– poor digestion
– poor intestines motility
– hair loss

With only a few days of extra cortisol my thyroid is feeling more comfortable: no hair loss and a more warm body. No more cold from the bones!
I do need to take my Iodium/Kelp supplement every day though.

Kelp by Donna Adenine

Adrenals and Thyroids are the battery and the gas pedal of the body. I’m revving and going through my minerals and co-factors faster.
I now take diligently daily: Zinc, Magnesium, Selenium, Kelp, vit D and Q10. If I forget any of these the system bucks.

I also take Lithium (the mineral, not the drug) and Progesteron (and Zinc to keep an even brain chemistry.

The action plan I wrote out with Dusty:
1. take two weeks to figure out correct HC dosage.
2. in two weeks test to see if Florinef is needed. This helps blood pressure. The test to take is: Renin, at 8 in the morning, sober without breakfast and without having gobbled salt the previous day.
3. in two months test Thyroid values. They should be better than they are now. If not supplement.
4. around that time: test sex hormones. They should be ideal. If not I should supplement. We’re talking DHEAs, Estrogen, Progesteron and Testosteron. Testosteron for females should be a 0.2% solution.
5. in 6 months time retest the whole shebang as these are the values I need to monitor my supplementing and my well being. DHEAs, Renin, electrolytes, FREE T3, FREE T4, Total and Free Testosterone, Progesterone. All of these things need to be supplemented if deficient.
6. Repeat this monitoring battery of tests every 6 months.

Also. Now that I’m probably on full replacement of the adrenal cortisol, I’m now in danger of my life should anything happen to me. Addisonian crisis.
Because of this I will ask my GP for an emergency injection kit for 100 ml of Solu-Cortef. It’s a cortisol you inject into a muscle in case of adrenal crisis. It’s pretty much like an epi-pen and it will save my life in the same fashion an epi-pen saves someone with sever allergies..

I’ve also ordered two wristband tags that state my needs. I hope, should I ever end up unconscious or wounded, a smart bystander will find me, read the tag and do what’s needed.
In my case: reach into my bra and feed me the pills you find there. Then call the emergency services.
Or give me the shot.

OMG feeling alive again is serious business.

by Mark Aplet

two more things to tell you:

  1. the court case about the manure plant was lost. Don’t know how that happened, I had such solid and scientific arguments. I guess we lost to political agenda and biases. I will now learn to live with a manure plant next to my cabin. But I did manage to write three engineer rapports last year, when I was still ill from ME and adrenal issues. That’s something to be proud of.
  2. I still wake up after 5 hours of sleep. I can’t find a consistent factor. But the stress system is involved, that I know. I’m now looking into problems with the intestines, specifically the Ileocecal valve, which lies between the small and large intestine. This bit hurts, at night. And I have circled towards a dietary habit that is THE diet for problems with the valve. Two coincidences that prompt me to look into this ileocecal valve.

How come I end up talking poo to you again? Twice!

One year later, a second chance.

Today it’s one year ago that we brought the cat home after she’d just been at the vets for a week and had barely survived. The long phase of recuperation was about to begin. Eventually it would take months and it was deep september when Lillepoes started to play again and lost all the grey hairs that had appeared around her nose.

For me the recuperation from that stress took at least as long. In January/February 2015 I lost all the health gain I had known since that miracle day of the 1st of May 2014 when I healed overnight from my ME because of the stress. I knew it would take months even IF I was able to get it back. Beside the cat-stress there was the court case concerning the manure facility that is planned in the field next to my cabin in the woods. For this case I had to perform “engineerily” a couple of times throughout the last year, starting on the 6th of February 2015. It was a conscious decision to do the work but I knew it was going to cost me, health wise.

It did cost me. And the grey hairs that I have grown in the course of 2015 have not gone away but I’m OK with that.

I did bounce back. Somewhere in Octobre I refound the relaxed state of being that is so important to my health. Around the 8th of December I was able to have some fun again without suffering an ME crash. By then I had learned to cook curry. I had learned to make custard from just egg yolks, heavy cream, salt, pepper and vanilla. Two dishes that support my health and that are welcome next to the endless pots of chicken soup that I make. I had written three or four reports that held up in court, that were not as incoherent as the ones I wrote in the previous years (this case has been active since 2013 I think. The final ruling is expected later this year. No idea, I think we have a 50/50 chance). And I had been living in the city for 8 weeks and felt alright which is a miracle because since 2009 I’ve not been able to stay at the city for more than 2 weeks without getting all flustered and hyper.

Later in December I started Reverse Therapy that boosted my recovery from ME tremendously. I then lost my zen again. But a session with my RT coach put it back in place again.

Late December I also did a Living Blood analysis and it was very cheerful to see the contents of the smallest drop of blood magnified and all the cells still living, moving, active as if they were still part of my body. It taught me there were not a lot of parasites wriggling about in that speck of blood. White cells looked impressive, there weren’t too much of those around either so no raging infection anywhere in the body. Red blood cells looked healthy. There were little specks of light wriggling all about and the technician said those were nutriënts. My blood was full of it! Looking good. The shape of my red blood cells indicated a shortage in vit B12 so I will pursue my cautious course of supplementing it.

This healthy LBA did make me “cheat” afterwards a bit easier on my diet. Chocolate every day! Now, 4 weeks later, I’ve gravitated back to healthy eating again because I can feel how bad foods are a burden to my system.

The Reverse Therapy is marvellous! It’s my ticket to health again. Not the health I had ten years ago but that’s ok, I wouldn’t want to be that person again anyway.

It’s still early days. I’m still at the learning new habits stage and that’s not easy. But because of RT being so tailormade to a person and, really, just the personal message your body is trying to get through that thick skull of yours, it’s not hard either. It’s very fitting.

For me, personally, I’m one of the people who has to learn (that it’s ok) to slow down. It’s OK to just sit back, to let life happen and to smell the roses. To “loiter”. (there’s an excellent Dutch word for it: lanterfanten.). Be a playful human without second thoughts.

Most people in RT need to learn to not be afraid, to not be so cautious and to go out and have fun. And they need to learn to stand up for themselves, set boundaries and express their feelings.

I’m one of the 40% minority that has plenty of fight when it comes to fending off other people but instead has a hard time to calm down.

There are two secret messages that I need to hear over and over again until they are ingrained into my mind and soul. I am going to share them with you but this is a one way street. You are not to communicate with me about them. They are between me and my body and by telling them here I just want to illustrate my RT proces to you, I’m not interested in your opinion about them. Discussing your opinion will interfere with my proces so please refrain.

These are the two main messages my body would like my head to know. Two pieces of wisdom that are news to me. I have lived my whole life without knowing that:

  1. we are safe. Here and now: we are safe. We are warm enough, fed enough, there’s no noise, there’s no chance of assault. There is no need to prepare for eventualities because We. Are. Safe.
  2. it’s ok to sit back and “lanterfant”. To just enjoy the moment, to live here, live now and “be not-useful”. Living here and now really is the meaning of life. It’s what I, the body, was build for and in which I excel. Enjoy it.

There we are. News to me! I’ve lived my whole life not knowing this and instead obeying a set of opposite rules. I’m sure you can see how opposite rules put the Autonomous Nervous System on edge. Drains it. Cause failing adrenals. Causing system wide collapse. ME.

Whenever I remember these two messages my body relaxes. My ANS relaxes. There’s a lot of mindfulness involved. Meditation. However you want to call it. In terms of the ANS it’s the Relaxation Response that gets triggered. And that’s what healing me.

Still ill?

Well, yes and no. The Addisson’s won’t go away. And I’m still weak. The sensitivity to a lot of foods and atmospheres remains. I still need to lay down every day, both for resting and for digestion, but these days I’m looking forward to having an hour of peace and quite. The rest and digest is a lucky byproduct. It’s no longer a chore I have to perform in order to beat this illness. It’s a luxury, to just lay there for an hour and lanterfant (mostly knit. Or surf the internet.)

I still take HCL with my food. I avoid gluten, beer, sugar, raw vegetables. Take all the supplements people with ME are supposed to take. I still do all the good things that got me from severe ME to a housebound level. Most days I’m still housebound, if you look at it from that end of the periscope.

But that’s just it. Looking from the outside you’d say I’m still doing all the same things but my perspective is 180 degrees different and that’s why everything is different now. I’m no longer an ill person. It’s true!

I no longer define myself. I no longer let my head-voice be the narrator of my life. My body is the narrator now and it prefers living in the moment. I’m trying to comply. It’s a bliss when it works. There really is a whole other realm of reality, in the moment.

This must be where meditating people get their kicks. (I’m not the meditating kind). This must be why the mindfullness people can be such a cult. (I hate hearing other people breathing or rave about the grass under their feet)

I’m doing it via Reverse Therapy. Same difference. Tailor made to suit me.

The other bits of Reverse Therapy are making me gain stamina. Physical stamina. I’m going out, doing things. Driving my car, visiting friends, standing on my feet for hours. I’ve experienced physical tiredness for the first time again. Not exhaustion but just physical tiredness. The kind that goes away with a good night sleep. The one that might get you a bit of muscle pain the following day. A novelty!

I wholeheartedly recommend Reverse Therapy to anyone with a chronic illness. Especially when you’re a perfectionist or tend to rationalize everything in your life. It won’t heal you. Recovery is a byproduct from this type of coaching. It will make you happy. It will show you you have a life. And that there’s a bloody marvelous way to live it, a way you’ve overlooked if you’re anything like me.

Reverse Therapy: recovering from ME/CFS

Had my first session last week, a Skype session with therapist Lyn White in the UK. This works.
It’s the way to keep the body (autonomic nervous system) out of Fight or Flight. I’m no longer wired. Instead I’m relaxed, chill, happy. Without pain, without tiredness.

I’ve just spend four days on a road trip and a midwinter wool fair. First day I drove for hours and hours. Second day I stood on my feet in a wool booth and talked to people for 7 hours. Third day the same. Fourth day drove back. All the time was spend with a friend, I was seldom alone.

No crash, no pain. No worries, no strain.
This is unheard of.

I did have my usual insomnia (and then some due to mosquito bites) in the night but I performed wonderful all of the days nonetheless.
I was not overly sensitive to noises, smells or the presence of my friend.

Back home there has been no crash. There was tiredness, of course. There were bouts of head aches because of all the impressions and things I’d seen. A bit of a hoarse throat because of the unusual amounts of talking. My feet tingled.
But I’ve been so cheerful all these days! And the days after, here, back home.

Reverse Therapy and Mickel Therapy are what works for me.

I’m not going to talk about their medical opinions about what ME is. Just know that both therapies give a tool box to keep the nervous system calm.
And whatever their, mine or your own theory is about the relation between nervous system and ME/CFS, keeping the former calm helps to alleviate symptoms of the latter.

I am VERY GLAD to be back in the calm again. I had lost it when life stresses hit us in January/February of this year.
(I had found it in the course of the years I spend at the cabin, alone. Well fed, warm and finally without that stupid ambition. Once I did Gupta Amygdala Retraining I was without symptoms too but the calmness hadn’t ingrained. With Reverse Therapy it has.)

For the past few months I tried DIY Reverse Therapy, having read all the things that have been written about it and understanding its principles and its ideas. But it was not the right way. Having a coach is much more efficient. Because my twittering brain is always trying to keep on top of things it kept getting in the way of actually applying Reverse Therapy. A chatterbox in the head is precisely the thing the nervous system doesn’t need.

Long story short: a whole new world has opened up to me. I’m calm and am experiencing bouts of happyness from the very core of my bones. Symptoms are dwindling. I’m without worries. I had a wonderful weekend with my friend.
I’ve started dreaming about (and planning) holidays.

Reverse Therapy and Mickel Therapy are precisely the thing I need. On top of all the other things I’ve learned to do over the years to support my body:
– take vitamin D because of where I live on the globe
– take extra vit D because my receptors are wonky
– dabble in mB12
– keep levels up from minerals Zinc, Lithium, Magnesium, Molybdenum, Selenium and Iodium
– avoid cruciferous vegetables (onions, kale, garlic etc.)
– supplement hormones I lack (Progesteron, Cortisol)(all body identical in physiological doses)
– supplement Progesteron to counter Estrogen highs during the cycle
– avoid blood sugar spikes and stress and practise sleep (restriction) therapy to sleep through the night
– avoid foods difficult to digest (boiled egg whites, raw food, nuts, leafy vegetables)
– avoid foods that “feel bad” (vegetable oils, caffeine, sugars, fried foods, vanillin, commercial chicken and vegetables that never saw soil or sunlight)
– avoid tiresome people or learn how to deal with them without investing energy
– rest flat for one hour, one hour after the last bite
– eat small portions
– aid the acidity of the stomach with HCL
– aid the lymphatic system with stretching, yawning and lots of full fats (butter, coconut fat, fatty animal tissue)
– keep the nervous system relaxed (Reverse Therapy, doing fun things, be cheerful, having cups of tea, dancing in the living room, cuddling the cats)

What else?
With the cortisol pills and the managing of my own stress levels I can tune the immune system a bit and have it be extra vigilant at times when I’m surrounded by lots of “germy people”.
I have gotten only one cold since I fell ill in 2008. And that cold was when I was severely stressed because I wanted to go on a cross-Europe train tour. Extra stress = extra cortisol = suppressing of the immune system = invitation to opportunistic viruses and bacteria.

And finally: I’m a firm believer of practising Mental Hygiene. You are not obliged to think what you think. If what I think makes me feel bad (worry, disaster scenario, reliving bad memories, focusing on bad aspects) I can and I should correct myself.
Think of something else. Anything else. Think of ants. Think of blue things. Think of the fun thing that happened the other day. Go watch David Armand mime the lyrics of Queen’s Don’t Stop Me Now.
There is no thought police in my head, I am free to think about something else.

 

PS I’m listening to a Norwegian podcast. For the first time since I fell ill. I can now listen to Norwegian again without feeling sad :)

As a result I’ve just started thinking about visiting that country again too. I can’t say this feeling will stay. I can’t yet claim I am in recovery. But I sure am happy and healthy, right this minute.

Holle time day 11: hiding in a hole

Around this time Frau Holle retreats into her well, taking with her all the souls of new and old life of this year, to be reborn in the next.

During the year she transforms from a Spring Maiden into a Fertile Summer Woman who reaps the fruits (and souls) from the land in the Fall. Come Winter she becomes a Snow Queen.

pic by Belovodchenko Anton
pic by Vatik
pic by Ayhan Yildiz
pic by Joseph Hoban

But when the wheel of time turns the year, just around these days, she is ageless. Timeless. Shapeless. She has taken all the life of the land to a safe haven, under her skirts, into her house at the bottom of the well, in a deep dark hole where no winter cold or humans can reach.

pic by Katinka Kober

I too would like to crawl away into a hole like that. Start sleeping. Healing. Only to emerge when the first promises of a new year are showing.
(Perhaps they are already here, these promises? Today was a bright winters’ day, with crisp light and some small birds already chattering. I see from behind my window.)

Yes I want to hide. Because today, and also yesterday, I am battling against stress. It’s been building up for a few weeks now but today it is particularly bad. It shouldn’t be, I have no stress, there’s nothing in my life threatening me. (Well, except the x-mas cards I didn’t send, to 5 people who really NEED to get some sort of hello from me)
really, need, desperate, hello

… I’ve got no words and I’ve got no energy. I should at least let the know this, if nothing else…

My body is twisted and cramped. My heart is pounding. I’m wearing my shoulders around my ears once again. Gone is the freedom of movement and fluidity the AtlasProfilax provided. I’ve stuffed it all away under tensed up muscles and startling responses.

Fifty times a day I realize I’ve slipped into a twisted posture. Sitting askew, not really relying on muscles to keep me upright but more on cushions and fatflaps.
I find myself leaning deep into the computer, squinting my eyes, and realize I’ve been sitting like this for an hour.
I can’t sleep. My breathing is shallow. I am in stress.

This is out of the ordinary. I’ve left this habit of stress behind when I moved to the cabin. It took a few months (or years) to grind it into omission. Now it’s back! This is how I was for 35 years. This is how my body was 35 years… it is not how I truly am.

Something in my body is whipping up stress.
It could be a number of things:

  • my period just started. Usually I take no progesterone for a couple of days to allow for my period. Today I cannot be without progesterone, my body is screaming for it.
  • something could be frustrating the clean-up of excitatory neurotransmitters. It’s already hindered by the MAO A mutation but it now seems it doesn’t get done at all. I’ve got no idea what that could be and I haven’t got the braincells or rest to study it online.
  • something could be egging on the production of these neurotransmitters. Could it be the mB12 and the Folinic Acid, releasing too much toxins in the system?
  • I had quite a bit of commercial chocolate at my sister-in-law’s the other day because we were there longer than expected and I was so going down the drain. I’d think it would have left the system already but you never know
  • I have quite a lot of bleeding “in the pyama region” (euphemism I heard today), this is adding to the bodily stress. I thought I was taking enough cortisone to deal with it but who knows? Sitting and lying doesn’t help it heal, that’s for sure. Of course, sitting and lying is all I want to do…
  • is the breakfast I had today? I went back to my usual two egg yokes.
  • is it the rice-gingerbread cookies I’m eating these days? are cinnamon and clove building up, messing with my brain?
  • I’ve been eating fish with kerry and fresh koriander all week, is that you nutmeg-in-the-kerry?

I can’t figure it out at the moment.

So I better approach it from an other angle. If I cannot reason my way up from the cause, I better start at a remedy and work from there.

What might help in this case is movement. If there’s toxin in the blood moving around will help it clear up. Yes, I should move…

Ha! you know how that is. You should. But you don’t.
The trickery part is that the longer I postpone it the more difficult it becomes.

Really, I should get up and get out there. Be a snow queen.
pic by Alfred Borchard
(I should also take a shower. Probably won’t happen either)

Oh, COME ON!
If I don’t move this mood will wreck my sleep tonight for sure! These things have a way of effecting the future. Move your butt!
pic by Thibaut Monot
grrrrr!

UPDATE
I wrote this post last night. I then went to sleep and slept from 22.30 untill 8.30. That’s the longest I’ve slept in…… EVER.
????
This body, it really has advanced humour.

pic by Nate Brelsford

I didn’t go outside.
I didn’t take a shower (it’s just not logical on day 2 of a period, I’ve got more waste to shed, day 3 is a glorious day for showering because then the period has drawing to a close.)
I did do some felting which involves standing at the sink and pounding. I didn’t watch tv and didn’t take my iPad to bed. I tried to relax my eyeballs because I think I’ve caused double vision by staring too intense at iPad and knitting. I skipped any x-mas cookies or nutmeg. I ate very light (= chocolate ganache and whipped cream which may be fat heavy but are not heavy to digest)
And I took echineaforce for the first time since september, when my liver needed a rest.
Now I’m back to my original suspicion that my night time waking has to do with allergies (dust mite) and a disproportionate reaction to that (neurotransmitters).

oh, I don’t know! It doesn’t make sense at all. I need to keep my body calm, that’s all I know. And it has a weird sense of humour.

I just woke up with a zit on the inside of my eyelid. The inside. Of the upper eyelid. The part that touches my eyeball.
pic by Sheldon Pickering

My health: strategy for my low cortisol

written a week ago:

CORTISOL LEVELS WERE MEASURED REALLY LOW
I had a good think about that ridiculously low cortisol level that was measured the other day: 0,3 in the morning where a value between 25 and 60 is normal.

This tells me that on that particular morning my adrenals were not functioning at a sufficient level. However, I did manage to get out of bed, drive myself to the hospital, walk through the cold and get myself to the right department and seen to. So some cortisol was clearly still there, I was not in danger of adrenal shock. I don’t think I functioned on adrenaline or willpower alone, I certainly wasn’t pushing things or in a fighting mood.

However, there were a few problems that morning indicating insufficient cortisol. I did drive at 85% of my usual alertness (but as I am a perfectionist who usually operates at 115% and also have my motor bike license -which makes you a better spotter in traffic- I feel I was not a danger on the road). I was bothered by the cold very much, a known body stressor. I had trouble operating the machine where you present your hospital ID (hello brain fog) and my hands trembled when I spoke to the nurse (a sign my body was nervous and lacked the hormones to battle that).

So I’m not sure how to interpret the level totally correct.

The measured level however indicates my adrenals have now shut down completely. There’s a good case to be made for that theory:

WORKING THEORY
My adrenals have shut down (almost) completely, since end of August.

Looking back I’d say this happened at the end of August. And stress was the cause, not the low supplementation of hydrocortisone.
My stressors were:

  1. the death of my grandmother in the Spring
  2. supplementing Zinc and inducing Copper dumps during the Summer
  3. a non-relaxed holiday to Ireland at the end of August. Bad sleep and digestion shut down.
  4. a blow to the kidneys in mid September: too much weird food + dehydration
  5. ongoing kidney- and liver pain ever since, nausea (organ malnutrition as a result)
  6. worries about a trip to Morocco we were to take last week

nr 3, the holiday to Ireland was just too much. Afterwards I couldn’t get my digestion working well enough, I couldn’t refind my tranquility. In short: recuperation took too long and was too costly. Then nr.4 happened and my belly hasn’t been functioning properly for months now. Pains and pangs, uncomfortable feeling and nausea all the time. Looking back these are symptoms of too low cortisol levels, especially now that the ultrasound and the bloodwork do not show other causes. No cortisol means no stomach acid, no bile, no motility.

Lack of cortisol also explains why on occasion I’d fall into a deep, peaceful sleep whenever I took my regular dose of  hydrocortisone. Normally this hormone would activate a body. But with shut down adrenals it would just quell a screeching lack, thus providing peace. Peace enough to sleep. I was so surprised as it was the same sleepiness you get with progesterone overdosing. You cannot fight it, you just want to sleeeeep. But with progesterone you awake groggy. With this cortisol sleep I awoke fine. Rested (just unwilling to leave the bed).

Like I said, I think stressors caused the shut down, not the cortisol I’ve been supplementing regularly for over a year now. As I supplement only 12,5 mg of hydrocortisone per day I don’t think the hormone therapy caused the shut down. The amount quoted in literature is at least 20 mg. I’ve been supplementing this lower amount since August 2012 and from that date on I was notably getting healthier and more active by the month. It is why I started to drive my car. It is why I felt confident enough to detox with the Zinc and the genome results.

A normal dose for someone with shut down adrenals is 20 mg or more. Or the other way around: doctors report people’s adrenals shutting down when doses of 20 mg or more are administered.

Shut down adrenals do explain why I needed absurd high amounts of progesterone the last two months. My body was scrambling for any and all progesterone to convert into cortisol. Indicating some level of function in the adrenals, btw.

THINGS THAT DON’T FIT NEATLY IN THIS THEORY:

  1. When that low level was measured I still functioned at an acceptable level
  2. at night I still often wake up with a cortisol peak, 8 hours after my last hydrocortisone dose which has been totally gone from my system by then.
  3. Four weeks ago I got a cold. The first one since I fell ill in 2008. A cold indicates that my immune system was too weak to keep it at bay. Usually immune systems get suppressed by cortisol which is why stressed people (with healthy adrenals) get every virus during flu season. How could I get a cold when my immune system is running wild and unchecked for years now?
  4. I am sensitive to low doses of anything. It may well be that 12,5 mg is enough for my adrenals to shut down.

We can think of reasons that make these things fit the theory anyway.

  1. I got to the hospital fine? I must be able to function at lower levels than other people. I sure do so with other hormones and medications. Or adrenaline makes the system go without causing its usual jumpy state.
  2. I wake up? My adrenals work sometimes, especially at night when blood sugar drops or I get too cold or dust allergy kicks in or insulin surge from the previous day catches up with me.
  3. I get a cold? My number was up, this was probably a particular persistent virus. I finally met a peron carrying a virus, haven’t met one for years which is the real reason I haven’t had a cold or the flu/ Or an alternative: the trip to Morocco had me so stressed out that I did make more cortisol and with that suppressed my immune system enough to contract the cold. I sure was worrying about it and determined to get it done. Got my fighting modus on. The funny thing was that once I conceded that I was not to go on the trip I took to bed and fell asleep, I developed a high fever and broke the cold in the next 18 hours. After that I had to lay a week in bed to recover. And another two weeks to recover properly. I am now back in the cabin and just today and yesterday I’ve felt alive again. Active. But this can also come from not being in the city. I am more charged in the city. And in need of more cortisol there.

 

CONCLUSIONS

At the moment my adrenals are not functioning. Supplementation is needed. More than 12,5 mg. At least enough to get my intestines working again properly. Aim for 17,5 mg. Digestion is a measuring stick. Getting hungry indicates I took too much.

Higher supplementation will shut down the adrenals for sure. Or keep them shut down. This brings risk, life threatening risks. I am aware of this.

Shut down adrenals an sich is not a problem. There’s a school of thought in medicine that thinks that a short amount of time will give the adrenals a chance to heal.

This will be my working theory. It can be amended when results contradict.

 

STRATEGY

Have shut down adrenals for the next few months. Aid them with enough hydrocortisone to keep my body out of stress and to have digestion functioning again.

Enjoy the peace. Rest up. Relax. Enjoy life. Don’t worry, don’t fret. Take plenty progesterone.

Be aware of the life threatening dangers. Inform loved ones. Always carry hydrocortisone on your body.

In February/March slowly wean off of the hydrocortisone. See if the adrenals kick in again.

If they do so: YAY!

If they don’t: visit the Adrenal Specialists in Radboud to become an official Addison’s patient and explore with them if it’s the adrenals or one of the brain glands that’s kapot.

 

ANOTHER PUZZLING BLOOD RESULT

Homocysteine was below 6. This is lower than you would expect under my working theory that my DNA mutations cause too high homocysteine. Has my supplemention of mB12 and Florinic Acid corrected my levels in only 3 months? Or is this a heterozygote mutation and did the incorrect gene never express?

things to think about next.

Doc says: go pee!

Well, no gruesome lumpy news from my docter this morning! My liver and gallbladder look fine and blood results indicate they work just fine.
My kidneys are being weird however. One has an “angiomypolygoom” (phonetic doctorspeak) which is a cluster of blood vessels and is called a “storks bite” when it presents on the outer skins of babies. Nothing serious.

Nothing serious, just a Stork giggle

pic by Turkkan35

What ís serious though, is that my kidney swells up whenever my bladder does. This is not good. Not good at all.

I have not found the medical term yet but doc says I NEED TO PEE MORE OFTEN. Really.

Great.

How do I go about that? erm….

  1. whenever I think of drinking, make a cup of tea
  2. whenever I pass the toilet, go pee
  3. throw something colourful in the middle of the room, whenever I see it, go pee.

I am going to try to pee every hour I think.

pic by Alan Witikoski

My doctor explains things weird. “Cholesterol is a bunch of buses running through your veins.” LDL-busses break down all the time, spilling their passengers and clogging the roads with their bus-carcasses. Good cholesterol busses don’t break down. And leave no passengers stranded.

I have high cholesterol, both LDL and HDL. Which makes the ratio ok. I could take pills, he said. Or I could nót take up smoking. And don’t get Diabetes. I had to promise. “Promise me you won’t put sugar in the tank of your buses!”

HAHAHA! Cackle! Cackle! Cackle!

pic by Andreas Krappweis

My higher intake of Zinc and vit D over the last 6 months has now put me into the right zone. Result! I can lower the Zinc somewhat. I had already noticed I no longer have Copper toxicity symptoms. Much. It was a tiresome Summer, getting the Zinc up but now I can go down to maintenance doses. Yay!

Then there was the cortisol blood level. Measured at 8 in the morning, before I took pills or food.

Value came back as 0,3

yeah…. I did notice I trembled a bit…

normal value is 25 to 60

yeah…

pic by Luka Rister

I am going to thing about that one for a bit.  Cause. Consequences. Strategy.

We finished the consultation with a small lecture about the lining of the belly. This is a most interesting organ. It reacts to whatever upsets one of the organs. It moves in, it migrates towards the upset place. For example, it might encapsulate an inflamed appendix, trying to fix it. And it does fix it (if the inflammation doesn’t kill you first).

I have a bit of fluid in “the cellar” of the abdominal lining. Indicating one of the organs in my belly was upset. But not enough to get a major reaction from the lining. Something as “small” as an egg bursting free (ovulation) might cause that small puddle. Not to worry.

Then we talked about linear medicine and medicine that addresses levels of functioning health. Linear is when you fall, you break something, you get a cast, you heal. The other has to do with levels of health. When you function at a subnormal level, as I do, the body still is in harmony. It has found some sort of balancing act to keep everything going, albeit on a lower then desirable level. This balancing act does have a price.  This will probably cause you to stay at this level for a long time or taper off to a lower level. You never jump upwards to a higher level.

Health professionals who address this kind of medicine contemplate nudging your body out of its balancing act to initiate it to take up balancing at a higher level. To enable this higher level, the body needs some help or supplementing of what it is missing. And a solid nudge to break its habit of functioning at the lower level.

He thought an osteopath might do me some good, help my intestines to get to a higher level of functioning. I’ll think about that too. For now I think that I can also get some enabling impulses from taking my rests dutifully and reconsider some foodstuffs.

pic by Cécile Graat

Now I’m home and I just send a thank you note to the professionals at the hospital who took my blood samples last Wednesday morning. When I presented at the counter I confessed to being a “spesiul snowflake” with low cortisol and that’s why I’m shaking and crying. They didn’t laugh or rolled their eyes, they just took care of me. Put me into the separate, soothing room with animals and animations on the walls. I was as stressfree as possible and very grateful not to be thought a nuisance.

With cortisol at 0,3 instead of 25-60 I was a trembling spesiul snowflake indeed…

pic by Carlo Winkelmann

Now I want to go and ink. I made some pencil drawings over tea this morning. But I am a good little snowflake and will take my rest instead. Passing toilet, going pee.

Ain’t this grand, I have a cold!

The sniffles. A snotneus. Inflamed throat. Just the common cold.

Haven’t gotten one for years, what with my immune system all in harms through lack of soothing cortisol levels. Used to get them all the time before I got Adrenal Fatigue.

Now I’m even more confused than usual about how to get through a day healthily.

My body clearly is under extra stress now so I should take more hydrocortisone, right? But more cortisol will dampen the imune system more, crippling its ability to fight this cold. The third side of the coin is that I am under extra stress to be in optimum health PRONTO because we’ve planned a family trip and I’m not well enough, even without the cold.

I feel stupid. Because there’s no clear strategy to be decided upon. And the more I stress the more vulnerable I get.

In the mean time I’ve been waken up from bodily stress after only 3 hours of sleep for five nights in a row now. (normally I get five with perhaps another two hours later in the night). Going that long on that few hours of sleep isn’t good. And it impairs my thinking even more.

One thing it does make clear is that I need that cortisol. I now take it at night, when I wake up in that fit of sweat, coughs and sniffles. It takes two hours for my body to calm down, I aid it with progesteron and hydrocortison because the first few nights taught me that without it my body will not calm down. Or have intestine motility.

It’s a strange experience to get to a calm place by taking hydrocortisone… An activating hormone. Calm enough to perhaps doze off for another hour when morning comes. Calm enough to tend to other bodily functions such as digestion. Relaxed muscles.

But is it a calm from rescuing the body from a shortage of cortisol or a calm from oppressing the imune system andthusly disabling the fight it needs to fight?

I really am without a clue.

Settling Dust.

I’ve settled down a bit.

10 days ago was the first day that I found peace with -once again- being able to only do one thing per day. I was “a good little patient” once again. Resigned to spend my day keeping my priorities in check:

  1. safety (check gas, check locks, check where you walk, no multi-tasking)
  2. food (enough, healthy, easily digestable)
  3. hormonal balance (progesteron, cortisol, no stress, managing weird brain chemistry)
  4. everything else

I was plenty busy keeping the first three in check. Anything else (a hobby, a blog post, social meeting, working, keeping the house tidy, being presentable to the rest of the world) only came about if there was time and energy left. There were not many days with either.

But 10 days ago things changed. I had settled. My body had grown accustumed to the new regime and had -hopefully- shed some of the worst heavy metals. Especially the Zinc that brought about Copper detoxification (which looks remarkably like ME or Chronical Fatigue with a big side of PMS)was doing its job.

Which was when I decided to up my dosage of Zinc to speed up the Copper shedding….  The day I did that was awful! I was ridiculously tired, ridiculously wired and totally hormonal. To which no progesteron cream helped. Which is a sign that this was pure brain chemistry running wild. I cried and cried about stupid things and silly things. I was desperate. All the while knowing it must be Copper excess. But knowing something doesn’t make you feel different. Not with chemicals doing pinball in the brain.

In the end all I could do was cry on my husbands shoulder, drink lots of water and go to bed early to leave this day behind me.
Saturday I was still a bit shaky. Sunday I was at peace again.

It is a very tricky process. But I feel lucky that each time it is confirmed: as soon as my body manages to get rid of the waste, I feel good again. I feel very fortunate that my recuperation time has sped up too. One, two days. No longer weeks or months like it was the last few years.

This Methyl-B12, Folinic Acid, Zinc, vit D, Lithium etc. are really working.

Then last week a little miracle happened. I was back in the cabin after a few tiresome days in the city. I drove myself (and the cat) to and from the city which was a victory all by itself. The plan was to rest hard because there was a birthday party I was looking forward too and after that another busy week in the city with a wedding party as its finale.

But something was bugging me: in the fields near me they are planning to build a manure-factory. A big installation that converts all kinds of manure into some usable gas. It’s one of the biggest plants in Europe that they are planning. 50 trucks of manure will come by my house every day, the stuff has to be transferred into the plant, has to be treated. It’s A Big Thing. With lots of noise and odour emission.

The process is in the planning stages. The first stage has been concluded: the permission has already been granted. Now is the final stage where people can object in court and that stage is nearly finished. The last day to file any claim was Wednesday.

I didn’t know they were planning this thing as I don’t follow the news because it stresses my system too much. And none of the neighbours had thought to inform me. It’s a strange dynamic when something like this happened. Everybody feels alone, on their own. And inadequate to battle something this big.

I only found out about the plant the week before. Of course I was stressed by this but I too had resigned to fate, I had chosen to be a supportive neighbour. Farmers would be able to get rid of their manure. It’s a piece of technologie. I could learn to appreciate it. Especially when given no choice.

pic by Nino Satria

That Wednesday I woke up with a dilemma. Today was the last day for an objection to be filed. I have a background in both planning and engineering and I could study the technical and policy reports and see if there was something there to object to. Even though I had never done such it thing. But it would mean a busy day, without the rest. I could get ill. Jeopardy the birthday, the week in the city, the wedding. There was no garantee for succes.

My husband advised me to stay out of it. “Choose your health.” This was the responsible thing to do and my inclination. Although I find it very difficult to let a chance pass I have learned to do so. It only stings until you say the word. Once you’ve made the decision there’s disappointment to deal with but no longer the strain of coulda-shoulda-woulda.

Just to get a little extra confirmation I posted the situation on Ravelry.com where my fellow knitters reside. They know me. They have seen me crawl my way back to better health, they know how fragile it still is.

To my utter surprise they said: “Go for it.” Unanimously. “Don’t hold back, go do your research and file a claim. You are the one that can do this.”

I didn’t do as they said per se but their views did open up the possibility in my head to spend one or two hours on the material. See if something’s there. If there is, proceed. If there is not, rest. (strangely enough I had not thought of this approach before. I was all GO/NO GO)

Anyway, that’s what I did. I ploughed through the county policies. Devoured the technical noise reports. Chewed on the technical odour testings. And nearly choked. There was something verrrrry weird there!

I checked and checked and could not believe it but it was 100% true: the technical research that had facilitated the county to stretch the legal odour limits which was necessary for the plant to be allowed to operate and douche 1km2 with its stench was solely based on ….. four people….. sniffing three odour samples. Resulting in one number (10,9) that was used in all the legal documents and policies as prove that the plant would not smell that bad at all. Research had proven it!

Yes.

Research had indeed proven it.

10,9 was the mean in a range from 2,2 to 22,5. Anything under 5 means people cannot stand the smell and no one should be subjected to it. Let alone to use this number in areas where people live. By taking the mean all those values under 5 had been conveniently disregarded.

4 people. One of them must have had a stuffed nose because there were some weird results in the spread of their findings.

They each sniffed 3 samples. Two smelled terrible, as all four people seemed to agree, even the one person with the stuffed nose. Numbers ran from 2,2 to 8,6. The third sample was odourless so it seemed because it got much higher numbers and that one person even gave it 22,5.

This was the sample that dragged the mean from below 5 up to 10,9 and gave the council and the county a political stick to force this plant upon us with. This was not a sound use of either math or the sniffing results.

I was thrilled! And exhausted. By now it was midday. I had not rested. I still had hours of work to mold this knowledge into a legal document. I took a little lie down. After that I called one of the neighbours whose number I found on a document from the previous stage. He was so friendly! He encouraged me and I found a second wind.

I wrote the paper. It’s not 100% clear, it has spelling mistakes, it has some internet-generation language in it. Frivolity even. I lost valuable time and health trying to find my way through the administrative process (where do I file, how do I file).

In the end I had a few minutes left, no time to proofread anymore, I pressed SEND. I was exhilarated!

I called more neighbours. I emailed the action committee of whose existence I had just learned. I wrote my knitter friends. Called my husband. Everybody was cheering. It was such a rush! I had found a gem, deeply hidden in the technical reports, and now there’s a serious change the judge will revoke the planning permission. Who would have thought that in that little patch of woodland, there was a little engineer that could?

pic Mateusz Stachowski

It took another two hours for my heart to stop pounding and me settling for the night.

The next day I drove myself to the birthdayparty and had a lovely day. I had my priorities for the day all checked: safety, food, balance. One hour into the party I did discover I was wearing my dress inside out but that’s a thing that is firmly placed in priority bullet number four: everything else. My friends didn’t mind. Neither should I. (of course I do! I felt stupid. And well on my way to becoming that weird little old lady…)

pic by Alan Eno

All in all this has given me an appetite. I really had fun, studying those reports. Writing their conclusions in my own words. I never told you, did I? That my Master thesis was a design with a Philosophical treaty about how planning engineers should approach the different parties ethically. And which language they should use (the language the other party understands, not the jargon one is used to use oneself)

It was a bad thesis anyway, filled with young cockiness. But it does illustrate my love for understanding something technical and rewording it in a language the reader understands.

I’m sure this experience and the joy I got from it will lead me somewhere and you will recognize it in my future and can say: “I knew it!”  :)

All in all I did a full days work. And I LOVED it.

Now I’ve even started dreaming about having a real job for real. One of the first warnings that comes to mind is that I should do what I want, not what I can. So making cat illustrations should be a more likely choice of direction than consulting for people who want to take on planning permissions. Please try and remember, Anna.

Well, isn’t that a miracle week?

pic by C. Graat

here now a few tidbits I’ve been meaning to share:

– I’ve bought a car. For me. It has brought me out of my isolation. I’m no longer trapped in that piece of woodland. I’m no longer dependent on the weekly trips to and from the city my husband makes. I can go when I want to. driving itself it still very tiresome but the idea that I can really lifts my spirits. I put an emergency knitting project into the glove box.

– driving the car in the Summer makes me think of my mother’s mother a lot. I admire her.

– I still mourn my grandmother very much. I am annoyed by how this surprises me. And how familiar these feelings are. And so unfamiliar too. I am deeply sad by losing this connection to the women who make up my family.

– each day is a struggle healthwise. But it’s no longer an uphill battle.

– my GP was delighted by the results and course I presented to him. I got warm handshakes and a request for help for one of his other patients. I was so relieved he understood everything I said. To him, biochemical talk is normal.

– Only last week I thought about the french numbers for 7,8,9 and 10: sept, huit, neuve, dice. They align with the months: Septembre, Ottobre, Novembre and Decembre. Too much similarity to be a co-incidence! Which would mean they are meant to be month nr. 7,8,9 and 10. Not 9,10,11 and 12.

A little googlygoogly affirms this. Roman years started with March. There you go. I thought I had an interesting thought but it was nowhere unique.

– Should I tell you about my thought about penstrokes and numbers or would that be too obvious too? See, Japanese numbers 1,2 and 3 are made out of one, two, three penstrokes. I think our Western numbers are too. One is a vertical stroke. Two is two horizontal strokes but someone forgot to lift their pen/stift from the paper/clay. Three is three horizontal strokes, again dragging your pen/stift.

I could go on, I’ve thought it through for quite a lot of numbers. Four is supposed to be a little square box. It’s botched.  Five could be a box too (or two vertical strokes). Six is a circle. Zeven is a long vertical stroke with a strike through. And on.

– I’ve found a way to write and not get stuck: do it in blog form. Perhaps I shall start a blog about the bacteria. I have all the information and the fascination. Weirdly enough I might have to wait until Novembre again. It seems my interests follow the seasons too. Just like my preference of colours.

– I am sewing couture dresses for myself. I’m teaching myself and have now finished two (practise) dresses. They are acceptable. And their fit is amazing. Having a nice dress, handmade and customfit, is a very pleasant luxury! I wear it with glee in the city. I wear it in the house, sitting up straight and feeling good.

– I’m really bored with how long everything takes and how little I can do. In my mind I have sewn five dresses already, in reality I have to wait for the day that I can sit up one hour at a time and have my first priority-ducks in a row before I can get anything fun done.

my tips for energizing when slugish

sleepy, floppy sea lion

how to energize when a kick in the behind is out of the question. Just a list of tips that work for me. Continue reading