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.

Getting Busy

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

Health:

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

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

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

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

I shouldn’t have.

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

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

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

Projects:

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

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

  I bought these dyes

 and this thirty-pound bump of undyed merino wool.

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

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

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

Kittens:

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

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

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

So yeah, busy life.

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

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

 

 

My first handspun!

This weekend, I’ve been relatively productive. I finished my first handspun yarn on Sunday. It started as a big wad of roving in a bag,

was spun into singles,

then plied to form this masterpiece:

I looked at other handspun yarns on the internet, and with all humility, I think I have some talent here. This is my first entire skein of handspun and it looks like things other people have for sale. I could get into this. A new world just opened up to me now that I can make my own yarn that looks any way I want it to look!

In kitten news, Merry’s abscess came back right after he was revaccinated. I had the vet lance it again today, and now I think I am comfortable doing it on my own. Basically, you get a sterile scalpel blade and pop it. After, you can flush it with iodine to make sure it’s clean. I’ll have to keep it open for a few days to let all the bacteria out by putting warm compresses on his wound. It’s nasty for sure, but the kitten feels so much better afterward.

The big cats never cease to amuse me. Carisa gave us a catsitter dvd for Christmas a few years ago, and my cats just love it. It’s a great way to keep them occupied when I am doing something they like to “help” with. Buttercup is the best – she watches the gerbil show while licking her lips. I should point out that Butters has never eaten anything that didn’t come from a can or a bag, so I’m not really sure what she thinks she’d do if these gerbils got out of the TV. It’s good to see that she has ambition.

Once the kittens started rolling in, I barely had time to manage the garden. I preplanned for this by doing all the work over the winter and early spring. I still get veggies and the like, but I don’t have to work quite so hard right now. Yesterday, we harvested our first onion and garlic! It took forever, but I’m proud of our work!