What I got for Trying

This year has been trying. I really thought I had something going. I found a new doctor who had new ideas, and we tried some of them. I took drugs to kill the mold living in my gut. I lived with the painful side effects of the mold toxins in my nervous system (when mold dies, it releases mold toxins or “mycotoxins” as a last hurrah). I found some supplements that really helped with the energy issue and my inability to sleep on a normal schedule. I even found one that helped with my food allergies and low blood pressure. I hoped, even allowed myself to believe that I could possibly be on a path to a cure.

I had one amazing week this year. We went to Maui with some friends. Every day of that trip I felt better and better, with the fog clearing from my brain. I was able to get up early every day. I was able to swim long distances to snorkel with very little exertion. It was almost like I wasn’t sick. When I got a serious gluten exposure, the supplements effectively mitigated the worst of the bad effects.

I started to engage in activities like I wasn’t sick. I started working with a physiotherapist on some exercises to stop my back from hurting. I invested more energy into Kitty Mine Crafts because I could. I started making plans to travel to Europe next year. I was finally going to not be sick anymore.

A little bit after my birthday, I saw a friend who had a small, but lingering cold. She told me she wasn’t contagious anymore, because it had been weeks. I laughed, telling her not to underestimate my ability to catch her cold. I thought I was kidding. I really did.

About 48 hours later, I felt like I had a light cold. I worried a bit, but I thought that maybe I had done enough to reset my immune system, to get it acting properly. I took the right vitamins. I rested, because I wanted to give my body its best chance to heal.

After a few days, I wasn’t better. My cold symptoms were gone, but I felt like I did three years ago when I found myself all but confined to my couch for a year. It was a little better this time, because I knew about my soy allergy, so my brain wasn’t on fire. I also have this whole fiber business going on, so I had things I could do from my sofa other than watching television. I made friends with a few video games I had been neglecting in my health. I thought I could overcome this by doing all the right things.

Then days turned into weeks. Weeks turned into two months. I’m better than I was on the first day, but right now, I have pretty firm limits. I thought, though, that my new doctor could help me recover faster. That it wouldn’t have to be a full year, or even another month of this.

When I told him I relapsed, he decided it would be a good opportunity to redo the echo and MRI I had done two years ago. He thought we’d see something because I was freshly into an active stage of the disease. Except it came back like I told him, all clean, save for something called a T2 prolongation in the white matter of my brain. It apparently has grown since it was last noted. All either of us knows about it is that these things can come up after an infection of some sort (autoimmune or viral) has crossed into the brain. It’s associated with migraines, MS, and vascular dementia. But that’s it.

He had me schedule another appointment a month later. When I hadn’t somehow remitted, he told me the most devastating thing he could have. He said that we had reached the limits of his education, and he couldn’t do anything else for me. He said he knew how to remove road blocks to healing, and he thought he had removed all of mine. He said that now it’s about convincing my body to heal, and he doesn’t know how to do that. He said my answers would not come from the medical field, but from diet and nutrition. He told me to comb the alternative disciplines for answers. The bottom line is, he left me out here on my own.

We discussed what I was going to do. I told him that I hadn’t been able to get out of the house for long because I couldn’t walk far or stand in line, and you do a lot of that at Christmas. He offered to do his part to get me a handicap parking permit. I invested in a cane that has a folding seat attached so I can stand in long lines (I find it preferable to a chair, which I don’t really feel I need). I even talked to a friend about coming to work for me as a part time personal assistant. All accommodations I didn’t want to make, but I feel I have to now. Because I can’t count on getting better.

See, at that appointment, a little more of my hope died. I thought if I kept at it, if I kept trying, I could get better. I mean, that’s what so many people say about ME/CFS – that we’re not trying hard enough, and if we did, we would get better. We have to want it. For some unknowable (to me) reason, I let those notions linger in my thoughts. Well, I do want it. And I have tried harder than anyone I know to not be sick. After years of trying, I got better for a week. One amazingly well-timed week. Then I was having trouble recovering from the trip, and then I caught a cold. And then I ended up disabled. I’m not sure these things are unrelated.

If trying got you better, I would be the healthiest person in the world. I watch my diet so carefully. I ask questions and tell people who really have no business knowing that I need them to be careful how they handle my food. I explored new treatments and I endured grueling side effects (seriously, the mycotoxins lit every nerve of my body on fire, and I thought that death would have been a kinder fate). I took medications that wiped out large portions of my days. I take pills all the time to sleep and stay awake at normal hours. I read every label on everything I touch. I do all of this, and I’m not better.

I hate that I’ve caved and started making accommodations for the ME/CFS. The fact that I’ve done this means that I’m accepting this is here for the long term. My doctors are telling me that this is real, and any hope I had of this being a psychosomatic thing I could cure just by wanting it to go away is gone. I’m sick, for real. This is going to be my life. The worst part is, when I give something up temporarily, it seems like I never get it back. Temporary seems to be what I tell myself to get through the transition from being able to do something myself to losing that ability.

I know that this sounds pretty dark. It is pretty dark. I’m mourning a loss. Along with my hope, the person I was going to be died. The person who is here now is different – not necessarily worse, and possibly even better. The future I was envisioning with world travel and a big important career is gone. The new future is not what the person I was wanted. I’m going to try to make it what the new person I am will want, though.

I only have vague notions of what my future is going to have in it. Several of my doctors have asked if I would please consider medical school, given that I have the intelligence and life experience that could really change other people’s life. I have to get to a certain point in healing before I can do that, though. I can’t read for long anymore. I can barely write without breaking it into several short sessions because the required focus wears me out. My memory is good long-term, but the short term memory is nothing short of terrible. I forget sentences I uttered just moments before. These are not conducive to intense study.

I’m not sure about how travel will go. I can’t enjoy Europe as I am right now. I can’t walk far, and getting the gear I need that far across the world would be hard. And let’s not forget the flight – the security procedures have become so terrible for me that the last time I flew, I completely broke down emotionally. The seats themselves generate pain on short flights. I’d be debilitated by the time I landed on a longer flight. I know I can fly within the US, but I think I’m going to have to cut back again. And I still can’t travel during the holiday and flu season.

I think I’m going to keep up with my wool business. I like that work, and it’s something I can do when I can’t be up for long stretches. And I made some great friends that way – I think that there are more friends out there that I just haven’t met yet.

I have a feeling that fostering will become an even smaller part of my life. I mean, with a personal assistant to help me, it should be more manageable, but I don’t know how I’ll manage to put my personal touch on the kittens if I am less involved.

So, yeah, that’s where I am. A lot sicker and quite lost. I haven’t given up entirely, but it’s an attractive option. Until then, I’ll keep trying.

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Running a Business by Trial and Error

Because I had another improvement in my health since starting the new treatment, I decided I could put some effort into making Kitty Mine Crafts grow. I think my search engine optimization is decent, because people do find me, but I think I suck at advertising. I tried advertising by using Ravelry first, then by using search ads on Etsy. I didn’t feel like I had a whole lot of success with the Ravelry advertising. I got maybe a 1% click rate on my ads, and that tells me that either they aren’t good ads or that the ad placement wasn’t good (or maybe I have expectations that are too high). I think the problem was that my ads aren’t good enough – Ravelry is a place where knitters and spinners gather, and I make products for those people in particular. These are some of the ads I made (the others won’t display in my browser – they worked just fine on Ravelry, though, and got the same number of views each):

 KMC Yarn Ad2 KMC Batt Ad

The ads rotated throughout the notebook section of Ravelry. I designed them myself – I’m no expert at graphic design, but I’m also not a professional photographer and my shop photos seem to work out. I might try to figure out what went wrong and redesign the ads.

I read both positive and negative things about Etsy’s search ads, so I thought I’d try them for myself. At first, it worked well – I got sales right away. I think that it had an effect on me like gambling has on some people (early payoff makes me unrealistically expect more payoff in the future if I just wait long enough), and I stopped getting sales from the ads but kept them running too long. Now I’ve spent more on advertising than I made in sales.

I realized that I need to learn how to more effectively use what advertising I have, both the free stuff and the paid stuff. Someone had great advice about how to make the ads more effective on one of the Etsy forums – choose a few items with “clickable” photos and only advertise those. It doesn’t mean that your other items aren’t good, it’s just that some pictures make people want to click more than others do. Fair enough – that’s what I’m trying now. I just started this approach a few days ago, so I’m still tweaking my selection.

In the meantime, I’ve gotten more foster kittens.

8 - wandering

I thought that since my business is called “Kitty Mine Crafts”, and I do sell a few cat toys,  that it would make sense to post pictures of the fuzzy babies on my Facebook and Twitter pages. This would serve two purposes: 1. It gets the foster kittens some exposure, so that maybe someone will fall in love and want to adopt them, and 2. Kittens are cute and will make some people come to my page just to see them, and maybe they’ll see some yarn or wool that they like, too (there’s a huge overlap in the knitter/spinner and kitten lover communities). The kittens seemed to have at least expanded my Facebook membership. Maybe the Twitter membership as well. I’ll call that a win.

I’m also trying to develop some unique products that I can repeat. I’ve developed these batts that I call Opalescent Batts (they will be available next week):

Opalescent batts

I can repeat these because the wool is commercially dyed, so I can get the same colorways again and again. The great thing about a listing like this is that I only have to take photos once, because all of the subsequent batts will look exactly like the first ones. I spend far more time photographing, editing photos, and listing items on Etsy than I ever do in making them. Most of my other rovings and batts are one of a kind, so I have to put in a massive amount of work every time. This should make my process more efficient.

I’m also going to try to repeat roving colorways that sold quickly. If they’ve sold once, maybe they’ll be good again, right? I’ve also learned to dye more than one item for each listing of “limited” items. Again, more products for almost the same amount of work.

I feel like I’ve done a good job so far, given that I haven’t had a single formal business lesson in my life. I’ve been open for eight months and have sold a total of one hundred and eighty items to over a hundred people. I know the first year (or more) of a new business is harder, that it takes time to grow a client base. Despite all that, I get frustrated that I will get sales every day for a couple of weeks, then none for long stretches of time. I see other Etsy people/businesses posting things they make on their Facebook pages and people want them so badly that they sell out before ever having to list them on Etsy. I need to figure out how to make that happen.

I also hope to be able to attend craft fairs some day. Right now, I am so small that the cost of renting a booth is prohibitive. I also worry that, because I sell a niche item, there really won’t be an audience for my wares at the local craft shows. If I could get a booth at a wool market or other specifically knitting/spinning themed gathering, I’d have a shot, but it’s really expensive. The Estes Park Wool Market, for example, costs $350 for the weekend. I’m just not that big yet – I can’t be sure I’ll make that back in sales. I’m also not healthy enough to put in those hours. I think the by the second day (and quite possibly half way through the first) I’d be half dead. I could hire someone to cover for me, but that just adds to the costs that I already find to be too steep.

With all this talk of wanting to grow, I should add that I also need to figure out just how big I want to be. Right now, I run my business from my home. When the ME/CFS  tells me I can’t work, that’s ok. If I get too big, I’ll need to consider a studio, maybe even a brick and mortar store. I’d have to have employees, and I’d have to have regular, predictable hours. This is just not something that I can do right now. Also, I travel a lot. If I get too big, I’d have to either stop traveling or deal with a giant backlog of orders while I am out. I get anxiety when I get orders while I’m gone. I always check to make sure buyers have gotten my message that I will ship upon my return, but almost none of them read the shop announcement or the automatic email in which I point this out and give them the opportunity to cancel the order if they just can’t wait. I fear that one day someone will leave me bad feedback about being slow because they didn’t read my messages. I have too many items in my shop now to edit each listing with this information. I don’t want to put my shop on vacation while I’m gone because people aren’t seeing what I have to offer, and I keep reading nightmare stories about people who have done exactly that and lost all the progress they’d previously made getting found (and no one can buy your items if they can’t find them). The solution I want to try for my next trip is to deactivate all but a manageable number of my listings and put a note about my travel dates right at the top of the few active listings.

So, you can see that any success I’ve had in my business is not pure luck – it has taken some exhausting work. I’ve had to set limits on the time I put into this (and I’m getting better, but not great, about enforcing them) because I work too hard. The process is constantly about learning and adapting to the sales environment. Speaking of, I’m off to learn some more about how to make my shop successful.

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. 😦

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!

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.

Week in Review

The past week has been very eventful for me. I got more expensive plastic bracelets, made a lot of sales, dyed a ton of roving, invested in and started dying commercial yarn, met a new doctor, worked a little bit on some knitting projects… I’m sure I’m leaving things out.

I’ll start from the beginning. On Monday, I was watching tv with Michael when I got the sudden, stabbing chest pain I’ve become so familiar with. I’m not surprised, really, because since I’ve been having more problems with POTS, it ups the chance for me having restrictive cardiomyopathy and reduced blood flow to my heart. No big deal, now that I know what it is. I just lie flat on my back and put my feet all the way up, restoring blood flow and allowing my heart to slow down. The pain was stronger than usual this time, so I had to have Michael move me into position (good thing he wasn’t on yet another business trip) while I waited it out. A half hour passed, but the pain had not, so Michael told me he was taking me to the hospital.

I was still in pain when I got to the hospital, so they hooked me up to the EKG machine and took some blood. I began to improve while I was hooked up to the machines. “You’re fine,” they told me, and sent me home. I got the blood labs back on my way out the door, and I noticed that there actually was something wrong – I had low potassium. It was just below the reference range, but I am sensitive to very small amounts of chemicals (1/8th of an infant’s dose of Metoprolol scrambled my brain, after all). Low potassium can be dangerous, as it causes arrhythmias and muscle cramps. That was my problem. For once I fit inside the box for someone with this problem, and they still didn’t catch it. I believe in my heart that it’s because I’m “too young for heart disease,” so they dismiss that right off the top. It didn’t matter that I told them I had a history of POTS, or that I could usually fix the problem by getting into a position that returned blood flow to my heart. Honestly, I didn’t really need a doctor to interpret the tests for me, I just needed one to run them. Bottom line is, I’m ok now. Adding a potassium supplement has helped, except for today. I am not sure if I took the supplement yesterday, and I didn’t want to over do it (too much potassium can have bad effects, too). I think I must not have, given that I woke up feeling awful. Of course, it could have been the work I did yesterday that I’m paying for.

I spent all day on Saturday dying wool. I definitely plan to list most of it for sale as is, but I may spin one or more of them into yarn. I dyed some commercial sock yarn, too. I saved one skein to knit up for myself and see how it looks and to check if it’s really enough to make most pairs of socks. I only got 360 yds in 100g of yarn, and usually I see around 400 yds in that weight (and most patterns call for a minimum of 400 yds). Of course, I measured the yarn on my niddy noddy, and I’ve always questioned the accuracy of that method of measurement.

  This is some of what I dyed. I had so much that I needed the space in two bathrooms to dry it!

I also met a new medical doctor this week. Well, he’s a DO (doctor of osteopathy), but still, he has access to some things the chiropractors don’t. He is also a chiropractor, which informs his approach to health care, and thus informed my decision to interview him and see if he’s good enough for my team. I’ll cut to the chase – I am going to use his services. I like the guy (Dr M) – he’s personable, he listens to what I have to say, he believes in ME/CFS (a tall order in a medical doctor), he prefers a nutrition and lifestyle approach before pharmaceuticals are introduced, he says I’m not telling him something he hasn’t heard before (never heard that before – seriously!) and most importantly, he has new ideas. I’ll admit, the idea he’s fondest of was something I’ve already explored with Dr B, but maybe different testing and a new approach might yield some results. He thinks I have a problem with mold, that it is living in my airways and maybe even my heart. I’ve seen that on Mystery Diagnosis, actually, so what the heck – let’s give it a shot. I really liked that he gave me a disclaimer that not a lot of doctors do – he said I’ve been sick for more than twenty years, and he doesn’t expect me to be better in less than two years (and that there will be ups and downs). I already knew this, but I appreciate that he isn’t claiming to have “the answer” and a quick fix. He also correctly guessed that a lot of doctors wanted to offer anti-depressants to treat me, because ME/CFS is, in their world, a psychiatric disorder. There’s only one thing I really don’t like – he failed a test that I give many of my new potential doctors. I gave him a copy of the ME/CFS Guidelines for Medical Practitioners, explaining that that document had a very accurate description of what I have been dealing with for the last two and a half years (and longer on a less intense scale) and what treatments have and have not worked for me. He took it, flipped through, then gave it back. It has been my experience that practitioners who keep the copy and read it on their own time have been a better fit for me – it shows that they are interested in what I have learned and what I believe is going on. The ones who don’t look at all or give it back tend to arrogantly think they know everything and ignore any input I may have, and they miss the fact that I am fine on paper but obviously sick in person (and subsequently declare me “just fine”). I think this may not be the case here, but I am alerted to the possibility that he is, in fact, just like the others.

In knitting news, I have had very little time to work on things that for myself or my friends – my time really has been devoted to my shop. However, I did manage a little knitting this week. I’m making socks for Dr B’s nephew:

and I’m making a Baby Surprise cardigan for Dr B and his wife’s expected baby. I have no pictures of that yet, but I hope to remember to get a few before I visit them next month. I’m not making promises – my memory has been pretty terrible lately.

So, that’s it this week. I need to get back to editing photos, and maybe even get a little sleep tonight. Wish me luck!

As Good as I Hoped… Almost

The last couple of weeks have been eventful, and almost everything has been going as well (or even better) than I hoped. My shop is exactly where I wanted it to be much faster than I expected. This week I have gotten sales on most days. I thought I was going to reach fifty items in my inventory for sale, but things are going slightly faster than I can replace them. This is fine. I don’t need the inventory, I was trying to drive business. There is a minimum number of listings that makes the shop appealing to buyers – they get drawn in by a listing, then look around to see if there is something they like better or want to add to the item that drew them in. If there isn’t enough, they leave or just buy the one thing. When there are more listings, there are more purchases. I thought the magic number was going to be one hundred, but it seems the number is actually forty-six (but I wish it were forty-two).

I realized that I needed to add more inventory in a hurry, so on Wednesday this week I dyed a bunch of new rovings (the first one isn’t listed yet)…

..and then I had a dying accident. That pumpkin orange you see on the right was going to be a first attempt at the candy corn color in the middle. I mix the dyes in a glass jar because if I pour boiling water in a plastic bottle, the bottle melts. I can use a warm dye, but I can’t move it to the squeeze bottle until it cools nearly all the way. In any case, I had my rubber gloves on and was carrying the jar of dye over to the undyed roving, when the jar slipped and broke. Plenty of the dye went into the roving, so I just went with that. Plenty more got on my countertop (fortunately, it’s a silestone counter and the dye comes out with Dawn, vinegar, and a long scrub with a magic eraser), a fair amount ended up in the utensil drawers in my kitchen island, and a little ended up on the floor. I also splashed some onto my dish towel, so I tried (and failed) to even out the color. The worst is that my tennis shoes are partly orange as well. 😦

I’ve made it my policy to limit my listings to one new item per day. There is a really good reason for this. If I list or relist something daily, it helps my visibility. I do not like the idea of paying another listing fee for something that doesn’t need it, so I just stick to new listings as often as possible. I can only work so much before I am exhausted (and not at all on Tuesdays when I have acupuncture, massage and bowling – too many scheduled events leave me overwhelmed). The photography and listing are very time consuming, and I like to have some photographed items ready for days when I really just can’t put in much effort at all. The problem is, I really don’t like to have a list of things that need to be done. I learned in college what it felt like to not procrastinate, and man, the feeling was so good that I have given up the sport of procrastination entirely. Well, almost entirely. In this case, it’s better not to just get it all done at once.

Health has actually factored in to my work lately. I have known for the last nine years that if I work too many hours (what constitutes too many varies from day to day), I pay for it inordinately. I try to limit myself, but I really like working, especially at this job. I put in nineteen hours a day the first few days, then maybe twelve hours the rest of the first few weeks, then eight from then on. The work was huge at first because I had to set up a Facebook page, create a Twitter account, make a Ravelry group, become on official yarn brand and shop on Ravelry, and read and implement what I learned about marketing and Search Engine Optimization (SEO).

I started to feel the impact of my activity pretty quickly. The first few days were ok, but the ME/CFS often has a delayed onset – I do something today and pay for it a few days later. I get tired, and the fibromyalgia pain acts up. I think what really happens is that stress hormones over-activate my nervous system, and then all the bad things come up. I started having more problems with my POTS, becoming breathless when simply standing up. I was also having insomnia and nightmares (from adrenaline surges at night) – first the scary vampires-chasing-me kind, then the soul crushing defeat that leaves me waking up in tears kind. This is the heart of what took me out when I got sick two and half years ago (can you believe it’s been that long? and also that short?).

The disabling fatigue is actually easier to handle this time, for many reasons. The most important reason, as far as I’m concerned, is that I am not also dealing with the brain-burn from the undetected soy and estrogen sensitivity I had the first time. The brain-burn can take me out on its own, and with the post-exertional malaise, well, it’s catastrophic. Another reason I’m finding it easier is that Dr B has an idea of what might have led to it. You see, I did another gallbladder cleanse a couple of weeks ago. I was gaining weight even though I had not changed my diet (about fifteen pounds in 3 months). Dr B thought I might have been holding on to hormones, so I took calcium d-glucarate to help my liver process them out. Well, it stopped the weight gain, but didn’t really lead to the weight going back to where it was. Through some testing, we learned that my gallbladder/biliary pathways are under-functioning, so the cleanse was supposed to clean it out and help it start over. For the week after the cleanse, I was rapidly losing weight (a pound a day). This is exactly what happened before I fell off a cliff those years ago. Dr B’s theory is that the hormones that I was storing as fat became water soluble from the cleanse, and that I was reabsorbing toxic hormones that were, in effect, poisoning me. I think he’s right. I am still taking the calcium d-glucarate to support hormone detox, but there isn’t much I can do about the toxic dose of whatever was stored in my fat cells. Just wait it out, I guess. What’s good is that I have a very viable answer, and this gives me hope that I can heal some and that I can prevent this level of function loss in the future.

Now don’t mistake me – I will never be cured. I’m always going to be prone to developing these symptoms if I overdo it or lose weight too quickly. But I know so much more about exactly what’s wrong and how to minimize the impact of the ME/CFS on my life than I did when this first happened, and more than I did even when I finally found the diagnosis a year and a half ago. I’m still not going to realistically be able to work in a full-time job outside of the home. But this is the dream, isn’t it? To work for yourself in a job that you love, when you want and how you want? It’s almost what I hoped for in my life. I could live without the chronic illness, but I can’t have everything.