Downright Discouraged

Most days I might rant and rave about something, but I keep a pretty optimistic attitude for all that. But once in a while, I get more than a little overwhelmed and downright discouraged.

Today is such a day.

I’m behind on everything. The corollary is I can’t keep up with anything! The house is a disaster. It needs a good cleaning in the worst way. A really deep cleaning, clearing out a whole bunch of stuff cleaning.

With that in mind, I got the bright idea I’d kill two birds with one stone and be clearing stuff out of the basement and pod, and be selling the decent stuff and thus making some extra money to use to pay off my computer.

It’s a good plan, except for one thing. It takes time. Today drove that point home.

I’d advertised a nice wooden futon frame we aren’t using, and agreed to meet the people who wanted it in a nearby church parking lot. Jonathan was going to help me load it into the back of the truck, but first we had to get it out of the pod.

When we did, we discovered there must be a leak allowing some moisture in there, because the wood was coated with a powdery mold/mildew. So I needed to clean that off. Once again. . . it took time.

After we got it loaded, I had about 45 minutes until I needed to drive to the church. Not long enough to do anything much really, but too long to sit around and do nothing. Anyway, the point is that by the time we got this thing out, cleaned, loaded, and delivered, my morning was pretty well shot.

I am behind on doing snail mail this week. Same thing with humor mailings. I need to WORK. Online sort of work that is. I’m way behind there too. I just have many, many things to do, and can't seem to find enough time to get them all done. Worse is so many hours are lost to the chronic pain/ fibromyalgia/ chronic fatigue problems.

Like today for instance. I’ve been recuperating from a 4+ hour trip to Marietta, Georgia, and another 4+ hours back. While at the clinic yesterday I got an IV full of anti-viral stuff, and it’s knocked me on my can. The doctor warned me that might happen. Nothing like feeling like you’ve got the flu to help you get better, right?

She had another blood test result back, too. More discouraging news, but not surprising since it just went along with the other lab results. This was a special blood test to see if the body is fighting infection, and it was ten times higher than it ought to be. That means I need to take an oral anti-viral medication now, plus shots every two weeks. I am sooooo thrilled (read that with lots and LOTS of sarcasm).

And while I’m being so thrilled (NOT!), the doc also told me next visit it will be time to start work on clearing the fibrin out of my blood vessels. Previous tests showed that a likely problem. The short explanation is this fibrin coating on the inside of the blood vessels traps the viruses and bacteria, trying to protect the body. However, at the same time it slows down the oxygen diffusion out to the cells, contributing to the fatigue.

To correct the problem and get rid of the fibrin, thus allowing oxygen to get through easier, means those trapped bacteria, viruses and toxins will also be released. And apparently THAT means an average of two months of feeling WORSE before slowly getting better over the next 6 or 7 months.

Well now, that’s really thrilling. (That's more sarcasm in case you're wondering.)

Have I mentioned I feel downright discouraged today?

Hey, Doc! You're Just Kidding, Right?

Yesterday Jess drove us over to Georgia so I could go to my appointment at the Fibromyalgia & Chronic Fatigue Clinic there. We left early, the trip went without incident, and that put us there over an hour ahead of my appointment. That worked out fine, as it gave us time for a light lunch before going over to the clinic.

First up was talking to the doctor. She had a bunch of lab results back from the 12 vials of blood they drew last time. OH. MY. WORD. That was a real shocker and an eye opener for me. I knew my thyroid was messed up, I had low levels of vitamin D, and a couple of other things, but these blood tests were showing viral and bacterial infections. Not just one, nope, how about half a dozen???

It seems a compromised immune system can allow all kinds of things to pop back up that have been latent in your system. Like way back in college, I had mono. That's caused by the Epstein-Barr Virus. So who knew it could reactivate and cause chronic illness, like Chronic Fatigue Syndrome? (Okay, maybe YOU knew it, but I sure didn't. But it says so even on the CDC website.)

And no, I am NOT contagious with any of these - I made it a point to ask the doctor about that.

In a simplified explanation of ONE of these tests, you're supposed to have a lab value of no higher than 10. Gee, mine was 5,120. I guess you could say that test was positive. (That was a little sarcasm in case you missed it.)

Besides the 3 virus's lurking in my body, there are 3 types of bacteria. One was for a type of pneumonia, which from what the doc was telling me about it, could explain the asthma-like symptoms I get sometimes.

And then, let us not forget LYME DISEASE.

Oh yeah. It's true. When the doctor asked to test for it last time, I almost refused because it's a really expensive lab test and I figured it was a waste of time. Guessed wrong on that one.

So there we are looking over all these lab results, positive for 3 bacterial infections and 3 viral infections, and the doctor looks at me and says, 'No wonder you're feeling bad!"

She'd written by every one of them "causes fatigue" and by one "causes flu-like symptoms". Her summation of upcoming treatment is to "get rid of these infections as quickly as possible while maintaining a balance of not doing it so quickly you feel terrible all the time."

If that doesn't make sense to you, it's because of a Herxheimer reaction. See, the problem is that when killing off infections, sometimes the toxins from their dying off are released faster than the kidneys and liver can remove them. This can cause fever, chills, headache, and muscle pain - a Herxheimer reaction.

I knew about this from my shepherding experience. The vets give special meds along with antibiotics to help counteract the shock. In acutely ill animals, it doesn't always work and the animal dies.

Hmmmm, well, if yesterday's treatments and today's feeling is any indication, we're not doing so well on that one. I had medications by IV (only took 3 tries this time to get one started, yeah, only) and two shots.

And today I feel like I've got a bad case of the flu.

So can I have a little cheese with this whine? Because this is rather depressing. We're spending a bunch of money trying to get me well, and right now I feel worse, and can't help but worry that I'm just wasting all this money.

And one thing I'm coming to realize, this is NOT a short-term project. It's going to take longer than I'd hoped, and again, in the mean time I have to wonder if it's actually doing any good, or I'm wasting a lot of money.

I'm sick and tired of feeling sick and tired.

De Pain, De Pain!

Anybody remember the old tv show, "Fantasy Island", with Ricardo Montalban? (Gotta love that guy; what an actor! He did such a good Khan.) If you remember the show, remember the little guy running around the island at the beginning of the show hollering, ‘De plane! De plane!” as all the guests get shuttled in for their fantasy filled island retreat. He’s running around in my head these days shouting “De pain, de pain!” but this ain’t no fantasy I’m living, and it ain’t no retreat.

Nope. This is real life. And anyone who has lived very long has met up with pain of some sort somewhere along the way. If not, they are either very lucky or living a very shallow life.

I should be doing all kinds of things right now. I need to get some snail mail done. I need to do laundry. I need to think about what all needs to be taken care of before we go on a trip next week and get that done too. I have all kinds of online work I could be doing.

But right now my body isn’t cooperating too well, and my brain isn’t focusing. Instead, there are thoughts and emotions swirling around in there like debris in a hurricane. Getting blown around, sometimes violently, sometimes a little calm in the eye of the storm, then right back to wildly whipping in the wind. It’s bad weather inside there folks.

I’m tired. Pain is fatiguing for one thing. But I suspect even if I were healthy, it would still be a battle right now to try to do everything I’m doing. I’m in transition. I’m trying to hang on. I’m looking and looking, trying to see that light at the end of the tunnel.

I know I’ve got more things to do than I can possibly get done. Too bad. They need done anyway. "Pare down your responsibilities," you say? Sounds like good advice, now just tell me what in Hades I can stop doing?

The farm chores? I’m hanging in there until such time as Jess can retire. Oh, he could retire now, but neither one of us are too eager to live on social security. Which brings up the internet work. The more I learn, the more there is to do. At some point I can outsource some of the work, but for now, it’s just me having to do it all.

Quitting just is not an option. This is the only way I can see of earning a living.

Now there are all kinds of ways to make money on the internet. And there are also many ways to lose your shirt to scammers or just not knowing or understanding what you are doing. Some ways of earning money fit my personality better than others and it’s taken time to figure out what those are. All of this takes time, both to learn how to do things and for a business to grow and make money. I am fitting more and more pieces together and feel the scales should tip in the next few months, maybe even weeks.

But again, it takes time. Time, it’s always a factor!

Maybe as much or even more than time itself is being able to USE the time. Being able to focus, to work without fatigue or pain clouding your brain.

But in the meantime, I am working as hard as I can. You can’t see the effects, unless you count the fact the animals haven’t keeled over and died from starvation, or we aren’t running around naked because I do eventually get around to washing clothes, or. . well, just don’t look at the house. There really is a limit to how much I can manage.

Time, time and money. One can always use more of both.

I’m spending money to go to the Fibro Clinic again. I need to be able to work longer hours. I need to banish the fatigue more often so I can get more work done and be able to exercise. I need to have my thyroid hormones regulated and other body functions put back to rights as much as possible. Until this happens, the fatigue prevents me from getting anyways near as much done as I would like or need to do. And it messes with my metabolism, making it nigh impossible to lose weight.

It’s all depressing too. I really don’t eat that much junk. Ice cream on Friday nights. I buy a big bar of dark chocolate as my main treat, and it usually lasts for two weeks. But the weight just keeps hanging on and I need to do something about that too. So it’s off to the Fibro/Fatigue Clinic, and hope they can help me get my body working as near optimum as possible.

Regular doctors can't take the time and/or don't have the specific knowledge to deal with the whole spectrum of problems that can be mixed in with fibromyalgia and chronic fatigue, not to mention an obscure problem like thoracic neuralgia. Insurance won't compensate them for the time they'd have to take with one patient to deal with it all and really understand and listen. Would government run health care be better? Not bloody likely. I have a friend in the UK who has fibromyalgia and can't get the health care she needs, and waits months to get in to see specialists.

No, I'm thinking it wouldn't matter. For such specialized health care, you're going to pay out of your pocket no matter what kind of health system is in place. But I need to function better, to be able to do more. So there we are.

Time and money. Never enough of both, ha!

I just have too many things in flux right now. I’m working on my health, I’m working on a new career, I’m working on just hanging on until I can get to the next level in so many different areas in my life. I’m looking forward to a housekeeper, and paying someone else to do the drudge work like directory submissions and other stuff needed to keep websites running and building traffic.

For now the guys are both working at their own full time jobs. (I think I’m working at 2 or 3.) But they are away from home, and I am here.

I hope I survive.

So, What Did The Doctor Say?

Well, it’s obviously been a long time since I updated this blog.

We had a good visit in West Virginia, and obviously got home okay. Since then we’ve made another little trip, this time to Georgia for my appointment at the Fibromyalgia & Chronic Fatigue Clinic last Wednesday. A couple of people have asked me how it went, so here’s what happened. . .

This appointment was for an hour with the doctor, as we needed to go over all the lab reports and get more going by the way of treatment. And believe it or not, we actually took more than an hour. She must not have had someone booked for the next half hour time slot, so she kept talking, then asked if I had any questions.

What’s more, it’s obvious the doctor actually spends some time prior to your appointment going over your lab reports and treatment plan. She had made a spreadsheet with my lab results from the first time I was there almost two years ago, and a month after that, and then my most recent labwork.

A few things stayed the same over the entire time span, but for the most part the readings were better after the first month of treatment, and then this last time, my most recent labwork was worse. Some of it WAY worse. Oops.

For instance, my thyroid hormone levels got really fouled up again. That doesn’t surprise me, because for some obscure reason, my regular doctor suddenly decided to decrease the dosage on one of my thyroid meds. It’s going to be jacked back up again now. Sigh. . .

The lab results having to do with my immune system showed that it, shall we say, is somewhat compromised. Not unusual with fibromyalgia patients. At present, I also have a chronic sinus infection. All this resulted in a lecture as to how I needed to treat any infections aggressively and not wait around hoping it would go away. The doc even had a little drawing somewhat like a flow chart showing all the different problems caused because the immune system isn’t up to par, and infections may die down but remain latent, then flare back up again, and bottom line, I’m on an antibiotic.

AND a probiotic, and energy type supplements, and vitamin D (low levels there!), and a couple of meds for a systemic candida infection.

After talking about lab results and what I needed to do treatment wise for the next month, she also discussed treatment we'll be doing on down the road to take care of another problem I have with my blood, and possibilities of some other problems I might have (like testing for Lyme Disease).

At least this time there was only one needlestick (hooray!), as the nurse put in the butterfly for the IV, and the lab tech got her needed 12 vials of blood before they started the IV meds.

Once I got the IV meds and a shot, I was ready to go home again. Thankfully, Jess was driving, because I'm pretty well done in after one of these visits.

I just hope all this helps. I need more energy. LOTS MORE ENERGY!!!!

Making a list and checking it twice!

Yes, I'm making a list and checking it twice, but it's not Santa's list. It's my grocery store list.

I've been looking through cookbooks this afternoon and trying to get ideas for new recipes to try, and otherwise working on the menus for this week. Changing your diet and what you can eat means changing your usual recipes and style of cooking.

I know somewhere down the road this new regime will be the "usual" -- but for now, it's new, and it's a LOT of work to figure out what we can eat, and what I need to get at the store. I'm not to the point of being able to do many spur of the moment "what are we going to eat?" meals. I need to plan ahead.

Have I mentioned I hope all this extra work is worth it?

Phase Two (or Three?)

Actually, I’m not sure what “phase” this is. I went to the Fibromyalgia Clinic, and I already started the 3-month eliminate-the-sugar diet, so maybe this next stage is actually phase three.

So what is Phase Three? Supplements, lots of supplements!

I finally sat down with my bag of goodies today, and set up a schedule for starting all these different supplements, vitamins and medications. I staggered it so I start something new every 3 or 4 days, hopefully giving enough time between each new addition to make sure I don’t have any side effects from it.

Today’s addition was prescription strength Vitamin D. My bloodwork showed I was deficient, so I’m supposed to take one capsule a week for 12 weeks. Must be potent stuff!

I’m moving forward, albeit very slowly. I’m just hoping all this stuff actually helps!

Day 15

I’m two weeks into the eliminate-the-sugar diet, and so far hanging in there, despite serious temptations. Jess bought home a 2# box of assorted Russell’s chocolates one day – a gift for me from a friend of his. The candy wasn’t a surprise, as this dear man gives me a box every year, so I was prepared and immediately tucked it away in the meat drawer of the refrigerator. I’ve got plans for that box of chocolates in 2 and a half months, ha, ha!

Going grocery shopping presents even more temptations. ‘Tis the season for chocolate covered cherries, which I dearly love. There are stacks and stacks of boxes of those luscious morsels in the aisles, but alas! Not one may pass my lips for some time yet!

Everywhere I go, there are cakes and cookies and candies lurking, ready to jump in my mouth! I hear them calling my name, a siren song of sugar seduction.

“Stand fast, stand fast, NO sugar…” has become my most oft repeated mantra.

So I continue on, and I must admit, it’s not such a constant hankering anymore. The addiction doesn’t have me so tightly in its’ grip, but still… once in a while I still get a real craving for some CHOCOLATE!!!

As for the other aspects of my needed health changes, I have yet to sit down and take the time to go through all the stuff I’m supposed to do, and set up a timetable to start doing it! That’s next up on the agenda, but for now, at least I’ve got 2 weeks down on the shake-the-sugar diet!

Stand fast, stand fast, NO sugar….

Catching Up

After giving my dear daughter (in-law) a pep talk about blogging regularly, I realized I’d better look to my own. (Is that a beam in my eye???)

Here it is, only 10am, and I’m exhausted. I’ve been up since 6:30am, which isn’t so bad, but it’s been busy. First thing I did was fix Jess’s lunch. We’re on week two of the G.I. eating plan. In case you’re not familiar with it, that stands for Glycemic Index, NOT a military type G.I.. And I say eating plan instead of diet, because this is supposed to be a life-long change, not another starve-yourself-diet to lose weight, then gain it all back when you go off the diet.

Granted, food choices are more restricted at first if you DO want to lose weight, but the overall plan is to make a long-term change of your food choices so you eat healthy food regularly.

I’m modifying my food choices even further at first since I’m also supposed to eliminate sugar for 3 months. It’s almost impossible to have NO sugar in your diet, because for one thing, it’s difficult to be sure exactly how much sugar is in the food you buy. Sometimes labels are deceptive. Even trying to buy food as unprocessed as possible doesn’t always guarantee there aren’t any additives. (I’m writing about this soon over on the Rural Ramblings blog.)

And of course, some foods have natural sugars, and I'm supposed to avoid those too.

Also this morning, I’ve worked on my humor mailings. Monday takes the longest because I set up templates for all the mailings for the week. It’s a time-saver in the long run to do that, because once I go to a website for information – like sunrises and sunsets or holidays – I do it just once for the whole week instead of going back to several websites every day.

Next up I did the outside chores. It’s warm here today, which means it’s a good day to clean out water buckets. (I hate doing it on cold days!) That takes a while, and dumping water is tiring. Tipping over buckets doesn’t sound so bad, but it entails bending over and I stay hunched over to spray the junk off the sides and bottom of the buckets. And dumping the pools is a real killer. I do it left-handed since the thoracic pain is in my right side, but it still aggravates the all-over-my-body fibromyalgia.

After that I took a card out to the mailbox, and stopped on the way back to put a few sprigs of mint in the dirt. I’ve had them in water for weeks, and pretty soon it’s going to freeze the water and kill the mint, so I figured I’d better just GET IT DONE.

Once back inside I put some chicken in the slow cooker for supper, and now here I am.

Exhausted.

Day 1

It’s a start…

Today is the first day of a 3-month “get rid of the sugar” diet. That may sound simple, but unless you’re eating pretty basic, food that hasn’t had some form of sugar added is hard to find. Then there’s the fact you have to beat the craving for sugar. Let’s face it: sugar is addictive. The more you’re used to eating, the harder it is to give it up.

I'm also starting to add the supplements the doctor prescribed. This will take a while, as I've got several to try out. I've just got a LOT of changes to make.

It doesn’t help it’s turned cold. My body doesn’t like it. It’s been a rough day.

Maybe Day 2 will be better.