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.

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.

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.

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!

Dealing with it

Secretly, I was hoping I’d be feeling good effects from the cleanse diet by this point. I kind of hoped that my whole CFS/ME problem was just about a food allergy – I have a lot of unrealistic hope like that. Maybe hope isn’t the word… maybe I mean wish. While I’m at it, I wish for a Pegasus. Oh, and I want to be a Princess, too!

<sigh>

At least the weird stomach aches stopped. That happened within about twenty-four hours. This time, I’m not quite as hungry as I was in the beginning when I did this before. I think this is because I generally eat a low glycemic index diet. There isn’t so much of a carbohydrate addiction to break this time.

What kills me is that I had a bad day on Thursday. I woke up feeling like my head was too heavy for my neck. I had no ambition. I was really cold, despite the thermostat reading 75°. Sure it was cold outside, and a huge snow storm was on the way (we got sixteen inches all told, but it never got terribly cold – maybe just below freezing), but it was warm inside. I had to take three naps, I think. And I couldn’t hold on to a thought. I couldn’t really knit more than a row at a time. I couldn’t read more than a sentence or two. Caffeine didn’t make it better.

Today, however, I had some early morning ambition. I moved some furniture, vacuumed and swept, wrote up and sent a recipe for butternut squash and apple soup to some friends who asked for it, did some laundry…

Maybe two hours into it, though, I felt the wall coming. I have this irrational reaction that leads me to try to outrun it. If I feel the wall coming, I try to work harder and faster. In reality, I think that trying to outrun the wall  just makes it come more quickly due to the stress. Still, I feel compelled to try. I think this is the most frustrating thing about the whole chronic illness thing: I’m a healthy, ambitious person stuck in a sick, lazy person’s body.

I’ve been able to knit some today and on Friday. It made me think about how I said I’d post my current works in progress. It’s been a long time since I’ve listed them. I think I’m just going to mention the ones I am actively working on. All of these projects are for other people. Most have a deadline. The others are just fuzzy memories at the moment.

These need to be done ASAP. Winter seems long, but it doesn’t last forever.

  • K’s winter wear. For Christmas, I sent K’s husband (Dr B) a hat and scarf. It’s been so cold where she lives that she confiscated these items a few times so she could be warm when she left the house. I’m making K her own set (with mittens as a bonus!) so she and her husband can be warm outside the house at the same time.
  • Dr R’s giant socks. I really need to make smaller friends. He wears a size eleven shoe. Fortunately, he wants warm, worsted weight socks. Totally doable.

This will be due soon enough. I have several friends who are expecting babies, and only one has announced it. I get to know early because I am the knitter and I need time to produce the baby items!

  • Crayon Blanket. Jen announced that she’s expecting a little girl. After the blanket, there will be cardigans and booties and whatever else I can think of. That catch is that Jen lives in Florida and is sensitive to wool. This means I need to make cool, wool-free items.

I’ve been working on this for a long time. I’m not sure what about this is taking me so long.

  • Gentleman Socks for Michael. I started these in April of last year. On the bright side, Michael already has a pair of socks I made him. I just wish he had more. I wish I had more. Alas, my knitting interest is fickle and I can’t force myself to work on something I’m just not feeling. I keep this one out, though, and put on a row here or there. I’m on the second sock, and I’ve even turned the heel. I can see the end, I just can’t seem to bring myself to get there. I really wonder why.

Oddly, I like the knitting deadlines. I feel like my knitting has purpose. I feel like people are expecting something of me. It’s all I can do to contribute to society these days, a few hand-knit items for people who appreciate them.

I expect to be casting on more things soon, despite my unlisted but definitely unfinished projects waiting in the closet. My acupuncturist is a knitter, but she stopped knitting over 30 years ago. She has admired my hand knit socks when she was busy sticking needles in me. She claims that she is not good enough at knitting to make socks. Everyone who knits by hand deserves a pair of hand knit socks, so at some point she will get some.

I’ve run out of energy again, so I’m going to have to end this post sooner than I’d like. I’m going to try to get pictures of the works in progress for the next post (which I really hope will occur in a day or two). What I’m hoping for the most is to feel well enough to see if the shelter has something for me to foster. I’ll keep my fingers crossed.

A Tangled Skein

This skein of yarn will be a pair of socks. Soon. It started out as a reasonably well-behaved skein, waiting in my sock yarn cabinet. Yes, my sock yarn has its own space, separate from the regular yarn – I don’t want the other yarn to feel fat. The lace-weight is clearly anorexic and the rest of the yarn just feels sorry for it.

I got this brilliant idea to make a pair of socks for a friend, with the intention of giving one to her on her birthday and one on Christmas (these events are days apart). I have to make two, so they count as two separate presents. I thought the idea might be hilarious, but maybe you have to be a knitter to find humor in that.  She has identical taste to me, and she loves my knitting, but doesn’t knit herself. So, I have no qualms about using my precious Malabrigo yarn to make her a pair of socks. In fact,  I was thrilled to be making these for her so that she may all at once learn the wonder that is Malabrigo and the superiority of hand-knit socks. The plan was just so perfect. Who knows, maybe these socks will inspire her to ask for knitting lessons…

As soon as I had the information I needed to make the socks, I ran upstairs to search for this yarn. I put it on my swift so I could wind it into a ball, but then it started to misbehave. The end tied to my ball winder kept catching in odd ways on the rest of the skein, and at some point the yarn became wrapped around the swift itself. I had to disconnect the swift from my table to get the yarn off, and then I had to commence the task of untangling the skein and winding the ball by hand. This bit is significant because, if all goes well, it takes maybe two minutes to wind a perfectly behaved skein into a ball. The above mess took about twelve hours total of my and Julie L’s time. Despite the fact that it took a lot of my time and that of my friend, the end result will benefit someone else, and that gives me great pleasure.

As soon as this happened, I saw the metaphor of my current life situation in the whole thing. Some people would see this mess and decide it wasn’t worth their time. The yarn would be discarded or given away. Others, like me, see the value behind the surface mess and will patiently pick at the knots until it has all been straightened out again. Not unlike what I’ve been doing with the CFS/ME thing.

I found the website for Dr Cheney (who linked CFS/ME to diastolic cardiomyopathy). He listed some blood tests that he would want a patient coming to him to have completed ahead of time for the sake of speeding up the part where he starts treating her (I say her because CFS/ME predominantly strikes women). I showed this to Dr B, who enthusiastically went along with the idea of running these tests.

We only did a small subset of these tests so far, including the tests for CMV, VIP, MSH, and C4a. CMV is Cytomegalovirus, which is one of the herpes viruses implicated in triggering or occurring opportunistically in CFS/ME. VIP measures the status of part of the autonomic nervous system (specifically for me, it can explain why my circadian rhythms do not exist). MSH measures the status of the hypothalmus (and in my case, would explain my lack of appetite). The first three tests came back abnormal, even by the lab standards: CMV is high, and the others are low. This is good news, because we finally have something we can work on. The particular way these tests are abnormal pointed us toward mold illness. The idea is that for some reason, certain people are really sensitive to the toxins released by mold. I’ve lived in humid environments for most of my life, and I could always tell you if a building had mold in it as soon as I walked in because I would have trouble breathing (and a few other, less prominent symptoms). If mold spores got into my lungs or heart (moist, dark environments are great for fungal growth), well, it would make sense that I would continue to have exposure symptoms despite having being away from mold-infested buildings. So, according to these tests, I have an active CMV infection and mold toxicity – so we’ve found two contributing factors to my illness.

So, a couple of knots untied, right? Well, the C4a test was delayed. If it were high, it would indicate that I was having inflammation due to mold biotoxins. When the results finally came in, they were in the lower third of the normal range, the opposite of what we would have guessed given the previous results. We’ve encountered yet another knot in this tangled yarn.

It is very easy to get frustrated with all of this. When we finally seem to be getting somewhere, I get a test back that tells me I was barking up the wrong tree after all. I know my CFS/ME isn’t from a single cause, but rather the fact that just enough bad things came together at the same time. What gets me through is treating each aspect as we find it. I kind of don’t care that I am either not getting better or only getting marginally better, I just want to feel like I’m still working on it. I keep seeing people posting pictures of the path to success on Facebook, and they look just like the tangled skein of yarn at the top of this page. I guess I have to believe that if I keep untying one knot at a time, eventually I’ll achieve success and untangle the illness.

There has been one bright spot, though. Dr B told me that all the research I’ve done has helped him with some of his other, more difficult to diagnose patients. He wanted me to know that even if I haven’t had a whole lot of success, my work has taught him things that allowed him to better help other patients. Just like the socks, I put in a whole lot of work to benefit someone else. Maybe that’s not so bad.