A Step Forward

I think I’ve hit that sweet spot today where I don’t have enough energy to engage in hard core work, but I have just enough energy to blog. This is good, because I’ve wanted to do this for some time now.

Let’s lead with the good news – Dr M has managed to help me affect one of the biggest problems that has been plaguing me for at least twenty years! Normally my sleep schedule goes around the clock in a cycle so rare that it almost exclusively occurs in blind people. Over the Christmas holidays when my brother and his family came to visit, I was able to wake up naturally between 6-8am every day. This is huge!! It’s something I’ve wanted to be true for many, many years.

I am not entirely sure what started this effect, but I know that I have to take melatonin (a sublingual form – this matters a lot) every night to keep it happening. If I skip, I can’t fall asleep. The melatonin wasn’t working much at first – it helped the sleep I did get to be more restful, but it didn’t help me fall asleep. Now, it also helps me get to sleep. All I can tell you is that I was taking a supplement regimen not unlike the ones that Dr B had me on a few years ago, but it kept making my head burn like soy does and it sapped all of my energy. I stopped taking the supplements one by one, and when I stopped entirely, my sleep schedule snapped into a normal cycle for weeks on end! I couldn’t believe it! The only catch (and there always is one) is that I traded poor quality and poorly timed sleep for constant pain that ranges from moderate to blinding.

Given that I had this fortuitous turn of events, I was able to have a really great Christmas with my brother and his family. We went to the candy factory, the tea factory, yarn shops, Julie’s house… I mean, we really got out and around. I missed out on a couple of events, but in part it had to do with other scheduling issues. I was glad for the breaks when I got them, but I was ok. And I didn’t even have to resort to pseudoephedrine except on the first day they were here (and I hadn’t quite quit all the supplements).

I had two bad days since they left, and I think those were about low potassium. I woke up on both of those days unable to move (kind of a hard feeling to describe, but my blood felt like molasses and I couldn’t quite wake up, like I was drugged), so I slept till noon. Today was rough, too, but I expected it. I decided over the weekend that it was really not working for me to have parts of my business on three levels of the house. I do the actual work on the main level, but my supplies and stock lived in the basement. My computer (where I edit photos and put up listings) lived upstairs. Discounting the efficiency issue, I realized I just couldn’t take that many stairs in a day. I had to leave things out overnight or longer, and it really bothered me. So, Michael and I switched offices.

Part of switching offices meant that I had to get new furniture to store my stock and raw materials. The cats LOVE my wool. I’ve even caught Duck sleeping in the basket I keep current spinning projects in. I can’t blame him – I’d want to sleep in a box of wool if I could as well. I can’t have cats appropriating my products for their own use, so the wool has to be behind closed doors. This meant a trip to Ikea (by myself – a huge mistake, given that two of the boxes were 56 pounds each) and furniture assembly. I only got one wool cabinet assembled before I was absolutely too fatigued to do one more thing. Overdoing it yesterday meant that today would be pretty unproductive. I did a little dying (just one load of wool and sock yarn for a project I’m making for a friend) and I spent the day on the computer, but mostly not working. I also watched tv and knit on a pair of socks I’m making for Michael. Also, I slept in till 9:00 this morning. ūüė¶

I managed to get a few good shots from my visit with the family. This is me teaching Alexis to dye:

Alexis Dye1Alexis Dye2Alexis Dye3

And these are the rovings she made. I’m planning to give her some of the profits from the sales. Alexis did the work after all, and I think this would be a great learning experience for her!

These are some shots of the kids decorating the tree:

Christmas 2012 a Christmas 2012 b Christmas 2012 c Christmas 2012 d Christmas 2012 e Christmas 2012 f Christmas 2012 g Christmas 2012 h Christmas 2012

And a few of Christmas itself!

presents 2012 presents 2012a presents 2012b presents 2012c presents 2012d presents 2012e

In everyone’s defense, it was 5:00 in the morning when these pictures were taken. If we look a little ragged, well, that’s why. We all had naps and looked like movie stars later. Or at least, I’m pretending that’s what’s true (I look how I look – if you don’t like it, you don’t have to look at it).

Finally, I have a few shots of the kids helping me make a custom order for Kitty Mine Crafts (I think you’ll find this familiar, Sara!) They loved working with the drum carder (but we made it clear this was a supervision only activity – the teeth on the licker are sharp!!!).

drumcarder kids drumcarder kids2

One last thing – while they were here, my sister-in-law wanted to learn more about how to shop and prepare food when you live gluten-free. They are trying to make the transition, and since I have to live that way, they got to see what I do to get by. I also introduced them to some recipes (most of which were well received by the adults) that they are planning to use at home. I promised Alicia that I would publish a recipe for a pot roast I made earlier this week, so here it is:

Ingredients –

  • approximately 4lbs chuck roast
  • 1 box Imagine Organic vegetable stock
  • 1/4 bottle of red wine (I used the leftover Ravenswood Old Vine Zinfandel)
  • 1 tsp garlic salt and parsley mixed
  • 3 celery stalks, chopped into bite-sized pieces
  • Two fistfulls of baby carrots

Instructions –

  1. In a large pot, pour in some olive oil (lightly cover the bottom of the pot) and brown the roast on all sides.
  2. Put the stock, wine, and garlic salt in the slow cooker. Set the heat to low.
  3. Add the meat.
  4. Let cook 4 hours, then add the celery.
  5. Let cook 2 more hours, then add carrots.
  6. Let cook at least another hour, then serve (you can leave it in for another two hours if you want).

The meat was fall-apart soft when we ate it. Also, I made this from whatever I could find in my pantry and kitchen. I recommend that you use some sort of aromatic (onions and the like) if you don’t have celery, and most root veggies can be substituted for the carrots to different effect. I don’t recommend potatoes if you’re trying to keep your glycemic index low, but to each his own. What I will say to everyone is that my sister-in-law announced that she lost 5 pounds over the holidays eating like I do. Yes – lost, not gained. Over the holidays. And she’s keeping it off. I’m proud of her!

That’s all for now. I hope to write again soon!

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All the Rest

This week, I’m resting. It’s not something I like to do, but it’s something I understand I¬†must¬†do. In just about two weeks, my brother and his family are coming out for Christmas. I am utterly thrilled about this, but I have to prepare. Preparing for me is not like it is for most people. For most, it’s about cleaning the house and decorating to make the guests feel like it’s really Christmas! For me, it’s about storing as much energy as I can so that I can actually enjoy visiting people who I don’t get to see often enough. The house will be clean(ish). There will be some decoration (Michael put Christmas lights on the outside of our house for the first time ever!). It just won’t be up to the standards I would like. But my guests will understand.

Resting this week means that I am not going to any appointment outside of my house. It doesn’t mean that I won’t leave the house at all, it just means that I have the luxury of doing it if and when I feel up to it. The problem with my appointments is that I have to go at the time scheduled, but sometimes I feel sick and really wish I could stay home instead (and this includes fun things like knit night). The stress of the whole thing makes it so I use more energy than I might otherwise. I will have none of that this week. I am still going to work, but that’s easy enough because again, I can do it on my own time. I build in 3 days to my expected ship date to account for such things as “I don’t feel well enough to make the 2-minute drive the the post office and Michael is out of town and can’t drop it off for me.” The people who ask me for custom jobs give me a long enough lead time that I can easily meet their expectations. I have no worries about this.

This time, I’m a little more at peace with the idea that I have to rest. I still don’t¬†like it, mind you, but I have found something that makes this need acceptable in my world. I got the testing back from Dr M, and finally, I look sick on paper. I’m sick enough that a pure medical doctor could see it. I’m in late stage adrenal failure. My acupuncturist doesn’t like the word “failure” to describe the condition, but I call it like I see it. My adrenal glands cannot keep up with the stress on my body, and they are now failing to do their job. I don’t judge them for it, I just know they can’t keep up.

Don’t get too excited that I finally have a diagnosis. I don’t. This is just like the ME/CFS diagnosis – adrenal failure is a symptom, not the disease. This also isn’t to be confused with Addison’s disease. As I understand it, Addison’s is usually autoimmune, with a few cases being about traumatic or congenital damage to the adrenal glands, and this is the primary disease. My adrenal glands are not damaged, they’re just overworked. The catch is, we need to find out why my adrenal glands are working too hard. There is some stressor hiding and completely overtaking my body. I have no evidence of infection or parasites. I am not emotionally stressed. I don’t seem to be having any more food reactions. It’s important to figure this out because adrenal insufficiency is life threatening.

Dr M was surprised when none of his testing showed a cause for the adrenal insufficiency. He was sure I had a parasite or infection that was just overlooked by my previous doctors. On the bright side, when the testing came back, he acknowledged that I am not an easy case, that I don’t fit into one of his boxes, and that I am really, really sick.

I have a theory about the biggest contributing factor to the adrenal problem. I think it’s my heart. I think that when I have low blood pressure and my heart tries to race to keep up with my cardiac output needs (a function powered by adrenaline), it puts demands on my adrenal glands that I can’t keep up with. I think that the dizzy spells I have been experiencing in the last few weeks are due to the fact that my body just can’t keep up, and it can’t get blood to my brain. I am going to mention this to Dr M the next time I see him. My next appointment is going to be after Christmas. He wants to retest and see if he can find parasites or infections that he can treat. We’re doing a protocol right now that should coax out anything hiding. If he doesn’t find something, I think that my theory should be explored. I am feeling more and more that my primary problem is cardiac output. If you don’t have enough blood circulation, it suppresses the immune system, makes you tired, and causes stress. Cardiomyopathy (or more particularly, whatever caused it) is very likely the root cause of my condition.

So, now that we’ve covered the technical stuff, let’s move on to the fun things!

I’m still doing well with my shop. I am growing quickly, and I’ve inquired with a wholesaler about forming a relationship so I can carry a larger variety of things in my shop! One thing I want in particular is commercially dyed wool so I can better fill these sampler packs I developed:

Wool Paint Sampler for Felting or Spinning - Hand dyed Merino Wool Roving in Flower Colors

I got the idea from these really cool felted paintings I’ve seen on Etsy. I realized that the people who make this art view wool like paint. I actually picked up needle felting supplies so I could try to make things like this – not that I have that level of skill, ¬†but I can create simple things. I’m working on Christmas themed felt coasters right now. They look a little primitive, but skill takes time to develop.

I’ve also been making new cat toys. It helps that I have kittens to demo the products – I feel like this is a win for everyone involved. I get to test the toys on the kittens to make sure they are something cats actually want to play with, I get pictures of kitties actually using my toys so people can see that real cats like the toys, and the kittens get a little exposure (I mention in my listings that the kittens will be up for adoption, and if someone wants to pursue the adoption I can send them to the shelter to see if they are a good match).

I just developed “Kitty Fusilli”…

Cat Toy - Set of 3 Kitty Fusilli - Wool/ Cotton/ Silk/ NylonCat Toy - Set of 3 Kitty Fusilli - Wool/ Cotton/ Silk/ Nylon

and August helped me demo them! He was such a good sport with my toys.

I also got a few shots of the crocheted ring toys, again with August demonstrating how fun they are!

Cat Toy - Set of 3 Crochet Ring Toys for Cats - Wool/Cotton/synthetic Fibers - 2-inch Plastic RingKitty Toy Bliss

I love that last shot of August! He doesn’t always have his eyes crossed, I just think the toy was so close up that he had trouble focusing! He just looks so silly-happy about his toy!

August came to me about a week ago with his mother and three brothers. We have Snow, Mr Gold, Cricket, Charming, and August.

Snow Unnamed boy1 Unnamed boy2 Unnamed boy3 Unnamed boy4

With a little help from my friends on Facebook, we chose a “Once Upon a Time” theme for this little family.

I am working on getting adoption portraits for the kittens. The above picture of Snow is my choice for her at this moment. I have a series of pictures of Mr Gold, and I think that the last one might be his adoption portrait:

Mr Gold's toy 1 Mr Gold's toy 2 Mr Gold's toy 3 Mr Gold's toy 4 Mr Gold's toy 5

 

I have one more great picture from our play sessions, but this one isn’t useful for adoption.

Duck's Kitten

Duck strikes again, absolutely loving the foster kittens as if he were their mother – see his smile? I can’t say enough about how great Duck is with the kittens. He plays with them and grooms them as if they were his.

So, for having to deal with less than ideal circumstances, I’m doing all right. And for now I’m going to rest, knowing that I’m doing the best I can.

Shameless Plug for Kitty Mine Crafts

 

 

 

 

 

 

Just in case you were interested. I haven’t forgotten about the blog, and in fact, I have news. Unfortunately, the news will have to wait while I work on my shop and go to my appointments. Click on the picture. I hope you like what you see.

Never Bored Again

I realized today that, as long as I keep running my own business, I will never be bored again. If I’m not dying, carding or spinning fiber, I am photographing it and putting it online. If I’m not directly making things happen in my shop, I’m reading advice about how to make things happen in my shop. I’m putting up tweets, pins, and Facebook updates. I’ve joined groups on Ravelry that support fiber artists who open Etsy shops of any sort. I have not really stopped working in the last couple of days.

On the bright side, I’m proud of a lot of my work. I’ve made batts that look like these:

(the watermelon batt has been the most popular by far!)

I’ve dyed roving that looks like this:

I spun a skein of yarn:

and I’ve made cat toys like these:

 

These are just a sampling of the work I’ve done. I really need to perfect the photography, but I think I do well considering that I don’t have a fancy SLR camera or particular training in photography (but I do have a dear friend who is a photographic artist by profession, and I suspect she can give me pointers if I ask. She’s been AMAZINGLY helpful with setting up the harder parts of my shop).

In addition to the above work, I’ve also been setting up a business center in the basement. I’ll take a picture of what I’ve got, but it’s going to be a place where the drum carder and dying equipment lives, as well as a place for Michael to put the business supplies for his game.

I plan to make a formal inventory in the next few days, and maybe scan the receipts that I don’t already have in a digital format so I can have accurate books.

I’ve still not sold anything, but I have been getting a lot of views for my shop as I have increased my advertising. I have hope that the first sale will be soon – I’m betting it will be the watermelon batt that goes first. Another friend of mine hasn’t had any sales yet either, so she’s due (she makes baby/child things and blankets). Another friend does very well with her shop (she makes great jewelry, mostly for babies), and she’s had some good advice for me. I’m still very ok with the fact that getting my first sale will take time. I may not feel the same way in another month, but I will cross that bridge when I get there. I plan to do paid ads when I get a hundred different listings in my shop. I have twenty now.

The kittens are growing and doing quite well now that their mother has moved on. Duck has been the best nanny I could ask for – he plays with the kittens and keeps them clean, so they aren’t missing the best parts of their mom.

Buckley isn’t all that visible on the first picture, but I think I will be using the shot of Saxon in the second picture for his adoption photo.

I like this litter because they have a very good herd instinct. If I’m in the living room, the kittens go to the living room. If I go to the kitchen, they follow me there. The greatest part is that when we go into their room, they all come in, waiting for their next meal (and they eat a lot – they’re going through two 12oz cans of cat food a day, which is double what the four of my adult cats eat!). I can shut the door and put them down for a nap with no fuss.

So, yes, I will never be bored again. I will be sick and unable to work sometimes, but I will never be without something to do when I feel up for it.

 

Getting Busy

There’s been yet another drastic change in my world since my last post. Who am I kidding – there have been A LOT of drastic changes in my world since the last post. I’ll break them down by category.

Health:

Ever since March, I’ve been gaining weight. It’s been happening despite a lack of change in my diet or activity level. As I gained weight, I started to feel more and more exhausted and my ability to focus just kept diminishing. I gained about fifteen pounds all told, which put me back to where I was before I started to see Dr B. I started to feel defeated – I know that ME/CFS has a relapse/remission cycle, but every time I go into a relapse, it feels like someone has yanked on my short leash, bringing me to my knees.

During one of my weekly talks with Dr B, he suggested that maybe I was gaining weight because I was holding on to hormones. We tried an effort to force my biliary systems (liver, gallbladder) to work harder (hormones are detoxified using, amongst other things, bile). I learned then that I actually have a very hard time digesting proteins. I ate nuts, and they would come back out completely undigested. This suggests a shortage of bile or liver or gall bladder dysfunction. I am aware that Yaz, a birth control pill I used to take, causes a sludge to build up in the gall bladder, and sometimes it gives people gall stones. There are lawsuits about this, but I can’t prove it was the Yaz, and I don’t have actual stones (the sludge is not visible on the ultrasound – they only see it if they take out your gall bladder), so I’m not sure I can be included.

I tried a gall bladder cleanse next. The idea is to let bile build up in the gall bladder, then force the contents out all at once, with the pressure forcing out any stones or sludge. The short version of that story is, it didn’t work. At one point during the cleanse, you’re supposed to drink a mixture of 1/2c olive oil and 1/2c grapefruit juice (it tastes way better than I would have guessed – if it were mixed with a little vodka it would have been a decent cocktail). Well, rather than getting digested, the olive oil came out in the exact same form it went in.

Armed with the knowledge that I have a problem with detoxification, I looked for something that might help me. I remembered that when I went for non-cognitive biofeedback, H said to ask my doctors about Calcium D-Glucarate. It’s supposed to aid the detoxification pathways for steroid hormones (like cortisol and estrogen). None of them knew anything about it, so I just discarded the idea.

I shouldn’t have.

I started taking the Calcium D- Glucarate a few weeks ago, and I’ve been feeling A LOT better. It was a slow process, but by the next morning after starting this new supplement my brain fog started clearing and I started losing weight. The weight loss has continued, and I’m down about five pounds now. I never in the whole time changed my diet or my exercise level. It’s incredible. What’s even more interesting is that my chiropractic adjustments have been holding better, too. Dr B said that his research turned up evidence that this supplement helps treat ligament laxity. Well, that’s been a problem for a long time, and might be part of the reason I can’t hold an adjustment. Ligament laxity led to me breaking an ACL in high school. In a Facebook post a few months ago, I surmised that I might be having a problem with estrogen given the correlation of flare ups with my hormone cycles. Looks like I was right. Estrogen is an inflammatory hormone, and it makes my brain burn like soy does. It seems that this supplement is working as it’s supposed to.

As my brain started to defog, I became more ambitious. I thought I was getting more energy, so I undertook a few larger projects. It turns out that all I got was ambition. I am motivated to do things, and thinking part is easier, but I burn out hard and fast in a day. What’s worse is that because I’m overexerting myself, I’m triggering Fibromyalgia flares. This is another prison I find myself in. As soon as I can see the outside world that I want to be a part of, I try to join it, only to be rudely prevented by the glass wall I didn’t realize was there.

One little bright spot in this health thing – check out this article. I’m also considering attending¬†this teleconference with the FDA.

Projects:

At some point during these last two years (yes, it’s been that long now since I got so sick I couldn’t function normally), I came to accept that I cannot work in a regular job with scheduled hours. It’s a problem that a lot of chronically ill people face, actually. We can and want to be productive, it just has to be on our own terms (or more particularly, the diseases’ terms). I knew the only way I was going to be able to have gainful employment was to work for myself in a job that I could do when I felt well and neglect when I had a bad day. At first, I just did volunteer activities like fostering kittens and patient advocacy. I figured if I wasn’t accountable to anyone for a paycheck, then I didn’t have to work regular, scheduled hours.

Just last week, though, I embarked on what will hopefully turn into a paying gig. I opened a store on Etsy, Kitty Mine Crafts. ¬† ¬†Nothing has sold yet, but I’m not terribly worried. I need to build inventory. I looked at competing stores and products, and I realized that there are hundreds of pages of merchandise available. I need to have a larger stock in order to increase my chances of showing up on any particular page. I spent most of the first week dying fiber, making batts, and purchasing supplies.

  I bought these dyes

 and this thirty-pound bump of undyed merino wool.

I had some undyed Falkland wool that came with my new drum carder (a Strauch Finest), so I got started with that while I was waiting for the supplies above. So far I have a few wool batts, some dyed roving, and one skein of handspun yarn listed. I also plan to sell handmade cat toys, but  I have to make some first!

I created a Facebook Page for the business as well. If you stop by either the store itself or the Facebook page, it would be helpful if you could click “like” on those pages, and/or on the particular items you happen to like. It helps publicize my stuff. I intend to put an Etsy widget for my store onto my blog, but I haven’t yet figured out how to make that happen.

There is another big project that I attempted (this week, in fact). Michael left for Gen Con ( he made a card & dice game called “Chaos and Alchemy” that he brought to demo at the convention), so I got to a task I’ve wanted to accomplish for a while – fixing the wood floor in the hallway between the kitten room, laundry room and office. A few months ago, my washing machine flooded that hallway – a $0.06 clamp broke, letting the machine overfill. After I fixed the machine, I noticed ¬†the floor boards were all wavy. I had leftover boards from when I installed the floor in the first place, so I ripped up the warped boards and replaced them. In two days. I’m still paying for that, but I’m glad I did it. There was black mold that smelled like death near the kitten room door. Yuck. It’s gone now.

Kittens:

Today, I have five kittens in my kitten room. I returned their mother to the shelter yesterday because, despite being a very devoted mother to the kittens when they were all very ill with a URI, she suddenly turned on the kittens and started attacking them. It made me cringe to see the way the kittens cowered when their mother even walked near them, and I didn’t want them to learn to fear adult cats. Now Duck plays with them, patiently allowing the kittens to learn that not all adult cats are cranky.

Anning, the kittens’ mother, was only six pounds when she went in for her spay surgery!

Anning’s litter of kittens came to me because they had special needs. Two of the kittens had an eye infection so severe that the vets thought they might need to remove the eyes. I was given a ton of medications to treat these kittens: an antibiotic called “Clavamox”, an anti-viral pill called “Famvr”, an antibiotic eye drop called “Ofloxacin”, and another anti-viral eye drop (given HOURLY) called “Idoxuridine”. The kittens have been going back to the vet weekly to check on their progress, and I am happy to report that they are going to be able to keep their eyes! I suspect their vision won’t be as good in the infected eyes, but as of today, their eyes look so clear you’d never know they had an infection. This is what foster homes are so good for – the shelter staff did not have the time to devote to hourly treatments on the kittens, but I did.

So yeah, busy life.

I plan to get photos of the kittens in the near future, as well as continuing to stock my Etsy store. I hope this means I’ll have more time and ambition for blogging, but we’ll just have to see. No promises, but wish me luck.

P.S. Today is Michael’s and my 10th anniversary. It’s unfortunate that he has to be away, but it is for a good cause. Plus, we went on a cruise earlier this year, so we’ve already celebrated. ūüôā

 

 

Everything Changes

I have been meaning to post for a long time now, but my absence this time hasn’t exactly been like the others. The greatest reason I haven’t posted in a while is that I really want to finish my report on the autoimmune diseases conference, then a report on a webinar I attended on cognition in CFS/ME, but I haven’t had the mental fortitude for it. I often get hung up on the idea of doing what I need to do as opposed to what I’d like to do. If I can do something that needs to be done, I tend to get on that right away because I never know when the opportunity might arise again. I came to the conclusion that I should write, even if it isn’t what I “should” be writing about.

Since my last post, a lot has transpired. I had several weeks where I felt amazingly, wonderfully normal. Not totally normal, but I was waking up before 8:00 in the morning, my head was clear, and I could do things I hadn’t been able to do in years. For example, I painted my kitchen and entry hallway.

This is just a crappy picture from my cell phone, but you can see I did the ceilings and the walls.

I finished that work just before I left for my cruise in April. I have some pictures that I hope to post at some point. The trip was nice, even though we missed a port-of-call due to high winds and waves. I got thoroughly sunburned, but it was nice to just travel purely for pleasure again. For the record, Carnival Cruise Lines does a great job with gluten-free food.

I then went to visit Dr B in May after a business trip to Chicago. I believe we will be repeating that trip in October. I didn’t manage to photograph the things I knit for his wife, despite my best-laid plans. I’m getting used to this kind of thing now. Nothing seems to go as I intend.

After the cruise, and maybe even during the trip, I started to slide backward. I had a hard time waking up early, and I started to have flu-like symptoms. I had to rely on pseudoephedrine and caffeine to get through a day. I gained eleven pounds. And I was freezing to the touch, even in 90+ degree weather. This led me to believe I needed to start taking thyroid hormones again, as all of these things are explicit symptoms of hypothyroidism. I had stopped taking the hormones roughly three months before, and my sleeping schedule had normalized to a late-rising, but generally steady daytime schedule. When I started on the thyroid hormones again, within 24 hours my schedule began the familiar rotation around the clock. I couldn’t sleep before 4:00am, and I couldn’t wake up before noon. I’ve been playing with the dose, and it seems I can take about 25mcg twice a week without causing the schedule to rotate so severely as it always has (it took about 10 weeks for a full rotation around the clock). I’ve been able to wake up around 11:00 or so the last few days. I’m hoping for a better schedule by the weekend, as I would like to attend the Estes Park Wool Market on Saturday, and I need to manage a two-hour drive at an early hour.

So, at first I wasn’t blogging because I decided to jump on the the new-found ability to do the things I used to do. After that, it was because I was too sick to manage the thinking required.

I’ve been knitting, but in the last week it has been difficult. For some reason I can’t thoroughly explain, I started losing the use my right arm. I know there is some muscular involvement, but also neurological involvement. My arm frequently goes numb from down the backside of my forearm to the tip of my pinky finger. If I don’t keep the arm supported, It starts to feel like the weight of my arm is too much for the muscles in my shoulder. The arm actually starts coming out of the socket. This makes knitting, driving, typing – all of that – difficult. I get some relief from the chiropractic adjustments, and a little from massage. I also thought about my POTS diagnosis. I tend to sleep on my left side because it keeps my heart from racing (the blood pools in whatever part of me is downward when I am still. I can’t fight the effects of gravity on my blood supply, so whatever is on top gets deprived of blood supply. When I am upright, my brain takes this hit. If I am lying down and my heart is deprived of blood, it starts to race in an effort to increase it’s own blood supply, but this effort actually fails because my heart moves too fast to effectively refill and it makes the problem worse). I thought that maybe if I could force myself to sleep on my right side, the blood would pool there a bit and I would have relief. It sort of works – I am not in pain as soon as I wake up, but it still gets there later in the day. Now my left pinky is going numb, too, probably from slight blood supply deprivation. There has to be a balance.

So, as for the projects I am actively knitting (you can click on the small pictures to enlarge them):

1. Carousel Sock knit-along with Sara. I’ve actually finished the first sock, and plan to cast on the second this evening. I’m going to get Michael to help me photograph it.

2. Baby Surprise Cardigan for Lane. She isn’t due until the fall, so I have some time. I plan to make more, but I’m not sure what yet.

3. Color Me blanket for Jen. I edited this pattern to make all the crayons face the same way. I’m compulsive like that. Jen had her baby about 10 days ago. She was a little earlier than we expected, so I didn’t finish in time. I despaired for a few days, then managed to start working on the blue crayon again. I’ve completed the green one, and I still need to make the purple one. I can do it quickly if I can just manage the focus.

4. Basic socks for Michael. There is nothing fancy to this patten, just stockinette socks in a variegated wool (Cascade Heritage Paints in 9931 Indian Summer)

I still have plenty of other projects in hibernation, but I’m focused on these.

I recently finished a few things as well.

1. Striped Blueberry Bubbles socks for me. I started and finished them on the trip to Chicago and Minnesota.

2. A crocheted Spiderman hat for Dr B’s nephew, J. J loved the hat the moment he saw it. He loved my blueberry bubbles socks, too, and suggested they would make great soccer socks for him. I promised to make some soccer socks for him just as soon as I could – I think after I finish the crayon blanket. I should point out that J is three, so I don’t consider it at all forward of him to just ask a relative stranger to make him some socks. My niece did the same thing regarding a sweater at one point. I find it flattering, even though their parents found it mortifying. I am never going to discourage a kid from liking yarn crafts.

3. Gentleman Socks for Michael. I had a hard time motivating myself to work on these, but once I had that motivation, they were done. I think the motivation came from procrastinating on another project.

I would have been knitting for one more baby right now, but the friend I wasn’t ready to name in a previous lost the baby. Guess my instincts were right about not feeling like I should announce it yet, despite having permission.

I’ve also been spinning, but I haven’t photographed that, either.

I’ve also fostered about eleven kittens since Mozzie. The first set was a mother, Clair, and her five kittens named for characters on The Cosby Show. I have to see where I put the pictures. Now I have five kittens without a mom. They were exposed to Panleuk, and they needed to leave the shelter. The kittens are perfectly healthy now, so they should be going back soon to get adopted. They have been named after characters from The Office. I need to photograph them as well.

So, I’m glad I posted today. I had a lot to say, and I’m hoping that getting what I wanted to do completed will free up my energy to do what I need to (the rest of the educational posts). I think this is going to be another life management lesson for me – it’s ok to do what I want to do if I don’t have the energy to do what I need to do. I’m not saying this applies to everyone, just people who have limitations like I do. This will no longer apply if I miraculously get better. But for right now, this will have to be my new rule.

How the World Changed in a Month

Roughly a month ago I restarted my cleanse diet. I didn’t have the miraculous return to health like the first time I tried it, as I established in the last post. I did, however, have a few weird and disappointing discoveries.

After abstaining for a while, I decided to have a bit of coffee. I rely on caffeine to get through a day awake, and I don’t have a problem with the caffeine in tea, so I thought this would be no big deal. I had a cup of an unidentified flavored coffee in my fridge, and it gave me a stomach ache. I gave it a few days, then tried again with organic, plain coffee and seemed to not react. I added cocoa powder (soy and corn free) and had the stomach aches like I had with gluten. I tried chocolate almond milk (again, soy and corn free) and had the same bad reaction. A friend suggested I try raw cocoa nibs, and again, the same. So far, I know I have a problem with cocoa and possibly coffee (unlikely, but still possible. I should test more once I am completely healed). On the bright side, I told this to the acupuncturist, and she did a treatment that should correct that problem. I have to wait until my gut has completely healed to try again, so we’ll just see.

I added rice and potatoes back, too, and the jury’s out as to whether they are a problem. These, too, will be retested after abstaining for awhile. How does a person get so many devastating food allergies/intolerances?

Near the end of the cleanse, something even weirder happened. I woke up one morning and, while putting in my contacts, noticed that the whites of my eyes had turned yellow. I went to a doctor and she confirmed that my eyes were still yellow. She ran blood tests to check liver function, and since I hadn’t had a thyroid panel in a long time, ran that, too.

I was able to follow-up with my regular Nurse Practitioner, C, a week later. “Your tests are perfectly normal,” she tells me. “Every value you have is in the center of the range. Good job with the self-regulation of your thyroid hormone dosage, by the way – that’s perfectly in the center of the range, too.” I should point out, if I haven’t already, that C told me to dose my thyroid meds based on my heart symptoms rather than worrying about the lab values. Better to be hypothyroid than in heart failure as far as I’m concerned.

She then asked, “Were you vaccinated for Hepatitis B?” I told her I was, right before college. “Well, that’s odd – you have no antibodies, no immunity to Hepatitis B. I think you’re a non-responder as far as vaccines are concerned.” Makes sense – I’ve contracted diseases I’ve been vaccinated against (like pertussis) or already contracted and should have subsequent immunity to (like chicken pox – I got it twice). This explains a lot, though. My immune system is perfectly happy to attack tissues that belong in my body, but send in a foreign body and the immune system fails to respond. This, to me, is clear proof that something is wrong with my immune system. More confirmation for the ME/CFS diagnosis.

A few days later, I started to feel ill, My lymph nodes swelled up, I got a little congested… I (foolishly) thought I just caught a cold. Heh. I wish. It turned into the full-on flu. I suffered from that for most of a week, and have spent the last week recovering. The acupuncturist offered her theory about the situation. She said that maybe the jaundice was the first sign of the flu. Maybe it got stuck in the most vulnerable organ I had and then replicated there. I could buy that. Nothing about me is normal.

Luckily, I recovered in time to attend a conference on autoimmune disease at a local hospital today. I will devote a full post to that in the future (I’m no longer going to try to predict when, as my illnesses keep getting in the way). I am glad I made it to that conference – it seems that the research is going in the right direction.

In the midst of all this, I made a career move. Dr B has been telling me that I should get into patient advocacy. He thinks that I have some really good life experience, and I have a lot to add to that field. After dealing with a situation in which a friend was being bullied into seeing what other people thought was “the right doctor” for her condition, I realized Dr B was right. I have had to deal with so many health care choices, doctors who don’t listen (or are just plain wrong), other people who think they have THE answer, and other trials and tribulations of being chronically and mysteriously ill that I have a special insight into the whole process. An insight that I can use to help others get what they want and need out of health care.

I looked up information on how to become a patient advocate and learned that really, there is no process. You can just decide to do the job. There are no certifications or degree programs. There are classes and certificate programs, but they don’t actually certify you to do anything – they’re just educational. I might take some of those classes at some point (especially the HIPAA classes), but yeah, I’m ready now.

My plan is to make educational material and do talks about how to get what you want out of health care. Medicine is an uncertain science, and there is rarely only one right way to treat yourself, especially with a chronic condition. I want to point out that patients have rights to refuse treatment if they so choose. I want people to realize the doctor works for them, and that if he/she isn’t working out, they don’t have to stay with that particular practitioner. I want to teach people how to take control of the situation by doing their own research and getting a doctor to listen. I want people to understand that they, not the doctor, make the healing happen. I want them to really think about how they want to care for their health (i.e. natural vs. pharmaceutical, preventative¬†vs. reactive) and go get that. So, I’ve started by attending the autoimmune diseases conference. I’ve also got a nebulous outline for my first talk.

I’ve already had to put my patient advocacy skills to work with our fluffy friend, Duck. For the last few years, Duck has been plagued with diarrhea. I could usually make it go away with lots of probiotics, but this time, it stopped working. I took Duck into the vet and learned he lost roughly half a pound (this is a lot for a twelve pound cat). The vet did an ultrasound, and showed me that Duck has inflammatory bowel disease. His intestinal walls had thickened in some areas, indicating that immune cells are coalescing. The doctor then informed me that Duck would need to be on corticosteroids and chemotherapy for the rest of his life.

I reminded the vet that I foster, and suppressing Duck’s immune system long-term seemed like a poor choice, given that I invite cat disease into my home with every litter I take. “You’ll just have to cross your fingers with that, I guess,” he told me. I asked what long-term effects the chemo might have, and he said that there was an office cat who had been on chemo for seven years and he was just fine. The vet then gave Duck a steroid shot and sent me home with the prednisone and chemo meds.

I left with the medication, and burst into tears on the way home. The vet nurses told me that I would have to give Duck the chemo meds while wearing gloves – that the medicine wasn’t safe for me to touch. I thought about the idea that, if the medicine isn’t safe for me to touch, how could it be safe for my two-year-old baby to take? I always knew he could die young, but to die of the effects of chemo? I then realized that the principles I wanted to convey in my patient advocacy practice apply here. I sought a second opinion with a holistic vet.

This vet, along with several of my cat harboring friends, thought the suggested protocol was extreme. The holistic vet offered me supplements, along with a vaccine detox (unlike in human medicine, veterinary medicine recognizes adverse reactions to vaccines) to try first. Luckily, Duck likes the supplements, and started eating as soon as the steroids wore off.

He hasn’t had any recurrence of the diarrhea yet. I’m not taking steroids off the table entirely, but I am never going to do the chemo. I decided (after reading about how the outcomes of most cancers do not improve despite treatment) that I wouldn’t treat cancer in myself or my cats (save for easily treated versions like early stage melanoma). No, I cannot justify the use of chemo in any circumstance.

In other news, I picked up a foster kitten about a week ago. Meet Mozzie:

When he sits, Mozzie has a heart on his left flank and a broken heart on his right flank. When he stands up, the markings are less obvious – they’re more roundish blobs.

Mozzie was shy and ill when I first got him. He hid behind the toilet and hissed when we went in to visit. It a matter of days, Mozzie cracked – he loves us now, and turns out to be the most affectionate kitten. Mozzie loves to be held, he loves to purr, and he loves to simply be near his people.

In addition to all the above events, this month I got wind that yet another of my friends is expecting. I’ll reveal who in a few months – she wasn’t telling anyone at first, but decided a few days later that maybe she did want to tell. I’ve informed a few close friends, but I somehow don’t feel right announcing it here just yet. I am knitting and crocheting baby stuff like crazy now. I am squeezing in a few other things, but not a whole lot. I fear Michael may never get his socks!

Well, maybe I’ll work on them when we go on the Caribbean cruise we also planned this month. More details about that in the future.

Told you the world changed this month!

The only thing that didn’t change is that I’ve kept knitting. I finished K’s winter garments:

But I forgot to photograph the mittens before I mailed them! Oops. I’m going to visit her and Dr B in May, so I’ll try to get a shot then. Maybe I can a picture of the socks I made her for Christmas as well.

I’m also almost done with Dr R’s giant socks. I’ll see if I can get a shot if him wearing them on Monday (because I should totally have them finished – they are worsted weight socks, after all…). I’m also making progress on Jen’s crayon blanket. Her little girl is due in June, so I don’t have a whole lot of time left.

Well, I have a lot of work to do. My next priority is talking about the autoimmune diseases conference, so be on the lookout!