Sunday, January 25, 2015

the diagnoses keep on coming

I've spoken a little bit about what has been going on with my health in this post, when we went to the UROCK Unschooling Conference, and in this post, when I meant to talk RVs, but instead got sidetracked by my fatigue and pain. Oh, and in this post, where I talk about why the RV, and how we need to sell this house.

And since those posts, I've been doing more investigating, more research, more doctor visits, more trying to get to the root of all of this, so somehow I can find a way to get back in balance, or at least try to, and to regain some of the person I used to be. Because everything listed in those previous posts tends to have all manner of co-morbidities, and they are all connected, but thus far none are pointing to the root cause of the problem, which is what I REALLY want to find.

A few months ago, I was led to a specialist three hours from here who is a geneticist/pathologist, who specializes in diagnosing/tracing connective tissue disorders. I was led there by members of an EDS group on Facebook, who share valuable information about symptoms, treatments, health care providers, and just support each other in general, sharing the knowing of what it's like living with connective tissue diseases.

I went to see him, he took an incredibly thorough family medical history, asked me an incredible array of my own health history questions, then ordered some tests: a cardiac echocardiogram, a standing MRI and CT scan of my whole body, which can only be gotten (around these parts) another three hour drive in the opposite direction.

I see him again on Monday the 26th, and my son is going this time, because I can see that he has the same hypermobile symptoms, and I want to know how to best manage that for him and keep him as healthy as possible throughout his life, so maybe he doesn't have to live in this kind of pain as he gets older. There is so much I could have done to support my healing had I known I had this disorder many many years ago.

Right now we are still in process of official diagnosis, so all we know for sure is that I have some type of idiopathic connective tissue disorder, hypermobile type. It could be Ehlers-Danlos Syndrome, or it could be something else. This is what the doctor is currently investigating.

Symptoms of Ehlers-Danlos Syndrome can include: 
  • Severe headache and neck pain
  • dizziness
  • lightheadedness
  • nausea and/or vomiting
  • vertigo
  • palpitations
  • difficulty swallowing
  • visual disturbances
  • ringing in the ears
  • sleep apnea
  • impaired fine motor skills
  • and/or muscle weakness
  • velvety or stretchy skin

If you would like to know more, and enjoy the rabbit hole of researching for yourself, here are a list of websites on EDS:
United States:

The Murray-Wood Foundation serves as support, education and as an advocate for patients and caregivers dealing with orphan diseases not limited to but including Ehlers-Danlos Syndrome, Arnold Chiari Malformation, Tethered Cord Syndrome, Syringomyelia and Mastocytosis/Mast Cell Activation Disorder as well as providing charitable giving to other non-profit organizations for research regarding said diseases.

Ehlers-Danlos Syndrome Network has lots of information on what EDS is, the different types, how to diagnose, and lots of other resources for EDS patients. 

Medical Zebras has good info on cervical instability and Chiari issues (also linked to EDS).
Pretty Ill. Dr. Diana, both a doctor (therapeutic optometrist) and a patient (on professional disability), offers help and hope for Multiple Sclerosis, Ehlers-Danlos syndrome, Dysautonomia, POTS, vascular abnormalities, Chronic Lyme, Chronic Fatigue and Fibromyalgia.

Center for Ehlers-Danlos Syndrome Alliance has EDS support, awareness, lots and lots of helpful information about EDS and treatment. 

Ehlers-Danlos National FoundationBy leading the search for knowledge about EDS, we are building a community of people who work together to effect change. 

United Kingdom

Ehlers-Danlos Support UKEDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome and help them live a full, active and positive life.   We are the only UK based charity that exclusively represents and supports people with any of the types of EDS.  This is regardless of their position on the EDS spectrum.  

Hypermobility Syndromes Association. Providing support and advice for people with hypermobility. Is good for the Brighton criteria, which is often used to help diagnose EDS hypermobility type. 

right now the disease has me

Living with chronic illness, until a person finds a treatment plan that actually begins to work for them, can easily become all-consuming. Pain that never ends and deep, unrelenting fatigue can be incredible motivators, while at the same time sapping a person of all their strength and abilities, making everything take exponentially longer than it would for an able-bodied person.

An example of this in my own life is the RV. We decided to redo the interior, which for us meant stripping the carpets out, painting the cabinets and walls, redoing the sofa, installing new floors, and adding our own decorative touches. We want it to feel like a home, since we may well be living in it for an undetermined amount of time. These projects would have taken two healthy able-bodied adults about a month of weekends, two at the most.

We bought the RV back in April - mid April to be exact. J immediately got to work ripping out the carpets and taking everything off and out - and that went quickly. It was also done in April. So then we just needed to paint, lay the flooring, redo the sofas, get a bed in there, and decorate. But then the mold happened.  That was back in July. It actually took months to get that sorted out - I never updated about that, but short story is we had the mold remediated back in August. There was a lot of back and forth with the RV place we were also working with, but it eventually got done, and we were pleased with the results. This more thanks to Mold Eaters than anything, they really worked to make it happen despite all the roadblocks put up by the RV place.

So J has been working in the RV on the weekends, in between the times he is cooking food for us, or running errands, or playing with our son, or taking care of our son and the dog when I literally cannot move from the sofa from pain and/or fatigue - since August. Also in there he had to maintain our 1.5 acre property (which we do to a minimal standard, obviously) and our 2600 sf home. We are what I like to call house wealthy but cash poor - we cannot afford to pay anyone to do this work for us - we had NO idea when we bought this place what it would take to maintain it, because we had never had such a situation before. And also, we expected me to get better and be able to help.

It is now almost the end of January, and because of all of the other things on his plate, including the most relaxing of his jobs - his full time job outside our home - he has only just now finished the priming and painting of the cabinets. (Note that this included taking out all of the drawers and taking off the cabinet faces, taking off the hardware, and also returning them and putting the hardware back on.) I'm not saying this to complain or seem pitiful or get attention - this is just the fact of our lives right now - a task that seemed so easy and doable several months ago, because we just didn't know what it would mean....has taken 6 months to even begin to complete.

THAT is how chronic illness works.

I read an article in The NewYorker (online, obviously) that until the last five paragraphs, is a well-written account of what people with chronic illness go through. Actually, if you just omit those last five paragraphs altogether, it reads perfectly to me. Because those last five paragraphs are NOT my experience, and I am still desperately trying to find some semblance of functional. I don't have the privilege of 80% functionality, like the author of that piece does. If I were to put a percentage on it, I'd say on good days I'm at about 30%. On bad days it's more like 10%. On my very best days, I'd call it 45%. But in general, with the fatigue, reactivity and pain, I average about 20 - 25% of the person I used to be. I don't recognize myself most of the time.

I suppose by those standards, the disease has me.

Saturday, January 24, 2015


I have been epically failing at maintaining this blog, but I am committed  to returning to it for a few reasons:

1)  To return to my journaling habit of yore. I am an external processor and have found that journaling is one of the things that keeps me sane and helps me through. Better to get it out of me than to keep it in, that sort of thing.

2) To have a place I maybe keep notes on my health and related conditions, that might somehow, somewhere, also help others, should they stumble upon it. Given the amount of people I have connected to on the internet that share my "rare" illness, I am given to thinking it's less rare and more underdiagnosed. If you see yourself in what I post and in my experiences, maybe it gives you a direction to look in yourself. That's my hope anyway, that by speaking about it, it offers someone else something.

3) To replace my rampant Facebok compulsion. It's not healthy how much time I spend there and what it does to me. This could be a post in and of itself.

4) To document my journey. We're getting ready to live in an RV! That's kind of odd and exciting at the same time!

5) To reconnect with myself. I used to love to write and love to blog. I need to do things that feed my brain, and I suspect this could be that again. Writing helps me to organize my thoughts and remember who I am. Hey, maybe it will even help my short-term memory - wouldn't that be a wonderful added bonus!

Thursday, July 24, 2014

we're watching....and we're waiting

This is how I've been feeling in our lives lately. Summer is here, and everyone else is off having great summer adventures, and we're home almost every weekend getting things ready for the house sale and the RV. And what's delaying everything? The RV.  I have been loathe to talk about this part, because it's been quite an upset to our plans, but here it is, and it's being handled, so what can I do. Haha Universe, you got us GOOD.

As I might have mentioned, my husband was redoing the interior, as in painting the walls, cabinets, and redoing the floors. There was some discussion as to whether we ought to take up the tile as well - I really wanted to redo ALL the floors, and he didn't want to have to do all of that taking up of the tile, because it's a PITA. But one day he said, "Oh, why not," and took up all the tile.

That was the beginning of the...adventure. He discovered that part of the floor was soggy and moldy. I'm allergic to mold. It is NOT a good thing for me to be around it. I get very very sick in moldy environments. Mold isn't good for anyone to be exposed to, but some of us are even more sensitive, and it can take us out in ways that take crazy amounts of time to recover from.

Oddly, I hadn't had any reactions to that rig, which is why we bought it - I have been the canary in the coalmine for all the RVs we looked at. I reacted to most of them, which is why we passed on SO MANY before buying this one. But this one was okay for me. The only thing we can figure about it is that because all of the damage was under the tile, that the tile was sealing it in.

So of course we freaked right out. There had already been delays in getting the flooring and how long it was taking to paint the cabinets, we had another one.  a BIG one, because did this mean we bought a rig we cannot even be in and use? Would we have to scrap it?

Our realtor gave us the name of a great mold remediation specialist she works with, so we called him and a couple of others and got an assessment. Yes, mold. Yes, could be remediated. No, not cheap. But yes, doable. The RV can be livable. But the mold was also under the slide, which the mold guys couldn't get to. We'd need an RV pro to jack up or take out the slide so they can do the work. Husband called all over town to different Rv places asking could they jack up the slide so the mold guys can do the wok? Would it be okay for the mold guys to be working on their property while the slide is up? Are you available now?

After many calls we found a place that said yes to all, and we thought yay, we're in business. It was worked out that the RV guys would do the work of taking out the rotted and wet subfloor an then the mold guys would come in and finish the job, then make sure there was no mold left (they have a machine that reads the levels and can tell us). The RV guys gave us a discount if w were willing to let them work on it between other jobs. We were.

Two weeks later, they finally started the job in earnest, and then discovered that the wet/leak had gone through the first subfloor to the second one. Apparently our RV is an anomaly in many ways, because usually there is one subfloor, then a layer of thick insulation, then the frame, the metal frame. Ours instead has one subfloor, then a thin layer of paper-like insulation, then a second subfloor that is also maybe the ceiling above the "basement" storage (the outdoor storage compartments below). So both layers need replacing and remediating. And all of a sudden the RV guys are hesitant to do anything.

Obviously this didn't thrill us, especially since after sitting there two weeks, they are just now hemming and hawing that they're not sure and we don't know what to do. Husband came up with plan B, which was just have the Rv guys jack up the slide so the mold guys can do what they need to do under it, then put it back and bring it home, and have the mold guys finish the work here on our property. Because they will hopefully actually do the work (they said they could originally, just their price was a little more and we're trying to save our $ here). But whatever, now we just want the work done already and no longer care so much about the $. Okay, we DO, but priorities. We have a house to sell here.

So today is the day that the mold guys are going out there and assessing the situation, hopefully doing what needs doing on the slide, then we figure out where to go from there. Meanwhile we had to put our estate sale on hold until we know when this work will be done, and that also means having our house on the market waits, too.

So we're watching....and we're waiting....

Sunday, July 20, 2014

best ice cream EVER

Holy cheebus. We interrupt this abandonment of blogging to tell you that this is seriously the greatest ice cream you will ever taste. Are you ready for this? It's Bulletproof Coffee Ice Cream. It IS. I found it here at Grassfed Geek, a nerd after my own heart. More extensive instructions for the base are found here at Bulletproof Exec. I omitted the MCT oil because I didn't have any, and honestly, it didn't need it, IMO. This stuff is insanely good. It' eating rainbows filled with happiness. It's bliss.

So here's what I did, which is pretty much what Grassfed Geek says to do combined with the bulletproof exec instructions. Go check out their websites, because if this is any indication, the recipes you will find there are golden.


2-3 Tbs coffee beans, ground (we had some Trader Joe's decaf that I use for ice cream because I can't handle full caffeine)
7 Tbs grassfed butter (I used Kerrygold)
7 Tbs coconut oil (I have tropical traditions, because it's sans flavor)
6 pastured egg yolks plus two whole eggs (from our chickens - I used this quantity because I had the yolks leftover from making a double batch of chocolate macaroons for my husband)
2 tsp vanilla
10 drops apple cider vinegar
5.5 Tbs xylitol (I use Xyla from birch)
1/2 tray of ice

On the lowest heat, melt butter and coconut oil and add ground coffee. Heat for 5 minutes.

In the meanwhile, add all other ingredients but ice to the Vitamix. Once the coffee mix is steeped, pour into the blender through a cheesecloth or a fine strainer, to get out all the good fat without having actual coffee beans in your ice cream. Blend for about 1-2 minutes on high. Add the half tray of ice cubes and blend again, then pour into ice cream maker and let it go.

In our ice cream maker I noticed this took half the time of coconut milk ice cream, probably because the fat solidified much more quickly, and it was much easier to scoop out off of the sides - also because of the fat, I'm sure.

I cannot imagine ever making any other ice cream again, this stuff is way too amazing and delicious and the creamiest dreamiest yumminess EVER. I will just take molybdenum to handle the sulfur of the egg yolks, since I usually eat low sulfur.

Also you can NOT eat as much of this as you would regular ice cream (for me that means coconut milk ice cream). It is FILLING, and fast, and RICH. It doesn't take much at all to satiate a body. Too much will leave your tummy saying "why?". My husband said it's like eating frozen frosting, and I'd say yeah, that about sums it up. Which is why it's SO delicious!

You're welcome.

UPDATE: I've tried this a few times now, and have some new variations. for a less rich (and less tummyache if you eat more of it) ice cream, I'd go with the original recipe of three egg yolks and three eggs, and up to a whole tray of ice.

I also made it in chocolate flavour - 2 heaping Tbs cocoa powder instead of the coffee beans, but still melted in pan together for 5 minutes to steep. No straining necessary. I used 3/4 tray of ice, and also added a pinch of salt. It was delicious!

I swear this ice cream is like crack. It is the best stuff ever! (I know I tend to say that when I like a recipe, but it's true each time I say it. It really is!)