Category Archives: CFS Fibro Illness

Illness Ramble

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Being frustrated with everything, I decided to look for other illness-related blogs.  Came across a few interesting ones.  Seems I’m not the only one frustrated with doctors and medicine.  Anyway, one person was talking about how meds work a bit, then don’t, and how reading about them, she found that they don’t know how certain meds even work.  Or why.  Got me thinking, and I replied this, which I thought I’d just put here as well.

no idea

“BTW, reading your About page, my first rheumatologist agreed with you that they are the same illness.  He said if you have more pain, they call it fibro, if you have more fatigue, they call it CFS.  Sometimes I think that after they’ve tested you for everything else and couldn’t find anything, which is what happened with me, they call it fibro/cfs instead of ‘we don’t have a clue what’s wrong with you, but if we give it a name we can prescribe meds.’  You know, the ones that don’t work, or work a month, as was said here.  🙂  They don’t know what’s wrong with you, they don’t know why the meds work when they randomly do, they don’t really know anything and we are just guinea pigs.   I take Prednisone, which I got on for a completely unrelated reason, and when the dose is right, I am 80% better.  They keep telling me Prednisone does not work for fibro.  Then why does it work?  Do I not have fibro after all?  Do you actually have a clue about anything related to this whatever it is illness?  Yes, I am currently very frustrated with my rheumatologist, who seems to have devolved into a ‘Do what I say, I don’t care how it affects you.  I am the doctor here, not you.’ mentality.”
you will listen

Going to call a new doctor today to see if she’s taking patients.  I just read, too, that you live longer if you have a female doctor, which my primary care is but not the rheumatologist.  Definitely time for a change.

An Idiot’s Guide to ME/CFS: Part III, “Treatment”

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I really like Midsomer Murders, too. I am seriously considering finding a new doctor, because mine just does not seem to get it at all.

Just A Little Health Update

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Doctor put me back on low-dose Prednisone. Started Monday, was 75% better by Wednesday. Still some pain, but it’s arthritis, not whatever crap that causes the rest of it. GrinningNineCan actually DO things again. Clean, rearrange, tidy up, cook (?. Haven’t actually tried that, yet.) Mood is 100% better. Not being in constant pain seems to make you much more cheery. Wonder why? So am I a happy camper right now. Time will tell how this plays out, but I am just enjoying NOW, which really, when you think about it, is all there actually is. NOW. Be Here Now. Jon Kabat-Zinn. Love that book.

Well, hello there.

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I have been absent for a while, I know. It’s been a difficult non-winter. Ever since the non-surgery, really. I’ve been struggling with pain, which leads to isolation, which leads to depression, which leads to ‘can’t think of one thing to say when I look at my blog’. So absent it was. I was. I think I am getting better, but I could be just having a better day (night). My sleep schedule is so screwed up it’s not even in the realm of controllable. I haven’t been out of the house in about three weeks. I did go downstairs and get my mail once. My life is soooo interesting.

Then there is the political climate in my country.  I find it very disturbing, and feel hopeless as far as doing anything about it.  Hate, prejudice, blame-the-victim, all seem to be running rampant in the discourse.  This is NOT a good sign.  No.  No it isn’t.  It is quite scary, when you think about it.  All the progress that’s been made in recent decades is teetering on the brink of being lost.  It makes me sad.

Okay, I guess I’m not actually any better, but if I have any readers left, I’m still here. Just having a hard time lately. Send me something cheerful in the comments. I need it. Thanks.

Winter???

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SnowflakesOr Freezer? It was 8 degrees yesterday. I am wearing jeans, my regular white socks topped with my big fuzzy Santa socks, a tee shirt, a heavy pullover, and a light but warm pullover on top of that. And I’m still cold. I am darned if I’m going to turn the heat above 66, though. Sixty-six is balmy at this time of year, right? I would have the windows open if it was 66 degrees outside. So anyway, I have my electric fireplace going, and use my little portable heater/fan to keep my feet warm at my desk. I love winter. I want SNOW, dammit! SNOW, do you hear me?

On the illness front, being sick sucks, as you all know by now, I’m sure. My sleep schedule is so screwed up that I am asleep more than I’m awake, and I sleep mostly during the day, regardless of what I try to get to sleep at night. My body either thinks I’m still a kid, praying for dawn so I wouldn’t have to be afraid of my dad coming home drunk, or that I am still working nights, which I only did for a year about fifteen years ago. Come on body, get with the program. This is depressing me, I’ve realized. I am feeling once again that I have no control over my life at all. Can’t even sleep at night like a normal person. I’m just here in my little box, time and life passing me by, with no hope and no purpose. This really stinks.

I’ve thought back to other times I’ve felt like this, and told myself that it’s time to change things, but it never worked. The illness always wins. Always. I fight, and I fight, and I try to be normal, and I pretend to be normal, but it always is just the same old same old. My body’s illness runs my life. I’m out of ideas. I want to live, not just exist, and I cannot seem to manage that. So this is the whiny post for today, folks. I’ll be better, now that I’ve put it out there. Thanks for reading, if anyone is still reading. 🙂

UPDATE: And it’s snowing. Finally. SnowRedHouse

Good Morning

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suncold

Yes, it’s not quite 11am, and I am up and showered. Going to lunch with a friend, then to have bloodwork done to check those pesky potassium levels. It is a gorgeous sunny day, 19 degrees Fahrenheit. Nineteen degrees, and still no snow. This is not winter, it is a freezer. But after gray day after gray day, sunshine is lovely. I’ll be outside in it. I want to go outside every day, even for a few minutes, but it is so hard to motivate myself amidst the pain and the fatigue and the just plain why bother. I need some encouragement, dear readers. Help!!!

>Agree or Disagree?

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Your Blog Should Be Yellow


You’re a cheerful, upbeat blogger who tends to make everyone laugh.

You are a great storyteller, and the first to post the latest funny link.

You’re also friendly and welcoming to everyone who comments on your blog.

I had a good day today. Did some work in the bedroom, remade the bed, made the lemon curd with the Meyer lemons. Not as much pain, and still no brain fog or just feeling crappy in general. Yesterday was all pain, all the time, so I enjoyed today.

It snowed again, and there are icicles hanging off the big light across the street. Don’t recall seeing that before.

It’s really great to be feeling so much better. I feel like I want to do things. I want to cook. I want to organize, I want to make something crafty. Usually, I’m just trying to get through the day without messing something up. My brain is working, people. It’s a good thing.

>Little Update

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I haven’t been exercising, because I do not want to make the leg pain worse. On the other hand, even though I did not get nearly enough sleep last night and am tired, I am not foggy. Except for the leg pain, I have been feeling pretty darn good. Also, my skin is dry, because the dewpoint has been in the minuses, but I am not itchy. I’m thinkin’ it’s the thyroid pills. I’m supposed to see the doctor in a couple of weeks, and I’m going to ask for a regular prescription, not just this trial I’m on. It is helping. Not saying it will help anyone else, not everyone has the same issues going on, or that it will even help me long-term. I’m used to meds just stopping working after awhile.

It’s a cold, sleety, freezing rainy day in the neighborhood, folks. And I AM going to make the lemon curd today. I hope. LOL

>Cold

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Yes, it’s very cold today. Beautiful and sunny and COLD. I still have snow piled against my windows from the storm we had a few days ago. It’s pretty neat here. After a storm, the highway department spends a night removing snow from the downtown area, where I live. They plow the sidewalks so people can get around, too. It’s a very user-friendly place to live.

I am still having a lot of leg pain. It wakes me up at night. I don’t think arthritis in my knee explains pain from my hip into my foot, or how I can have an almost pain-free day last week. If it was arthritis, wouldn’t it hurt every day, and why hurt when I’m sleeping and not using my legs? It’s a mystery to me.

My friend Tess bought some Meyer lemons and gave me some. I have never seen Meyer lemons here in New England before this. They smell nice, and look like a regular lemon, except more orange. It seems they are a cross between a lemon and a mandarin orange. I am going to make lemon curd with them. I haven’t made that in a while, and have only had regular lemons to make it with til now. Lemon curd on toast is like eating sunshine in the middle of winter. You can use it as pie filling, or between cake layers, too, although I haven’t ever. I like lemon pie. Maybe I could make a Shaker lemon pie with some of them. I’ve made it with regular lemons before. On America’s Test Kitchen the other day they made one and shredded the lemon slices instead of using them whole. I’d like to try that. Like I’m actually going to cook something. Well, I am going to make the curd. That’s cooking, right?

Anyone want the recipe for lemon curd? Here it is:

Lemon Curd

½ cup Meyer lemon juice (or regular, may need more sugar)
2 teaspoons finely grated lemon zest
½ cup sugar
2 large eggs
½ cup butter (1 stick), cut into pieces.

In a medium sized metal bowl, whisk together Meyer lemon zest, juice, sugar and eggs. Add butter and set bowl over a saucepan of simmering water. The bowl should not touch the water. Stir until thickened (160°F). This should take about 6 – 8 minutes.
Makes just under 2 cups.

>It Snowed

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It was beautiful. All over now. Bright sunny day. I am feeling good again except for the leg pain, which is quite strong today. Doctor was so not helpful. Big disappointment. After calling three times, I got two emails, one with two sentences about the thyroid test and nothing about everything else they tested me for. The second was one sentence saying I have arthritis in my knee. I KNOW that. I want to know about the pain that goes up and down the entire outside of that leg, starting at the hip and down into the foot. Nothing. What to do about it? Nothing. Time for a change of doctors.

I got an email from these people asking to post this article. They seem legit and even though it’s not about fibro, it’s about gluten-free eating, which is probably relevant to a lot of you. So here it is:

http://www.nursingschools.net/blog/2011/01/100-delectable-recipes-for-your-gluten-free-kid/

For those of you who are into this sort of thing, which I’m not but I know her, there is a healer who has done long-distance work on me, and it has helped at relaxing my muscles and making me feel better. I can’t say it will work for everyone, or that it’s any kind of cure or fix, it just made me feel better at the time. Here’s the link:

http://asyouwishhealing.weebly.com/

Please remember, I am NOT recommending either of these, just putting them out there for anyone who may be interested.

>Oh, Well

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My life according to Maxine. Woke up in pain with no energy. One day in a row of good days. One is better than none, but it’s disappointing. I’m always hopeful when I have a good day, but only rarely does a second one turn up the very next day.

Still waiting for a call-back from the doctor with my test results. I’ve called three times. They ordered the tests. Not me. So tell me the results, please.

It’s a very cold, bright, sunny day. So that means a big snowstorm is coming tonight. I love snow. I can see it falling at night in the light across the street and it is always so pretty. I like snowy winter much better than sticky summer. Even if it is harder to get around.

Well, back to reading blogs. Me and my couch. We’re quite an item. LOL

>Surprised

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>I woke up this morning feeling almost normal. I have a bit of energy. I can’t remember the last time I had a bit of energy, or when I felt this good.

Taking it slow, because I don’t want to ruin it, but the delightful bonus of having days, weeks, or months of feeling really, really awful is that when you finally feel relatively good you have all the clutter and mess to clear up. All your lovely energy goes just to catch up, and sometimes you lose the energy before getting even part way done.

I have a homemaker, but she’s only here two hours a week, and in that time she has to do laundry, shopping, cleaning the bathroom, vacuuming, errands. There’s no time for extras, even though she’s willing if there was.

I think that’s the hardest thing about living alone. No one to take up the slack when you can’t. No one to bring you a nice cup of tea when you can barely move. It’s all you. There is a good side to living alone, which is you do not have to live up to anyone else’s expectations. You are not responsible for anyone else’s well-being. But no one is responsible for yours, either. It’s a trade-off, like most things in life.

But I am HAPPY to feel good. Happy to have some energy. It’s been a long time, people. A long time.

>New Med

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I’m happy to say that I seem to be feeling much, much better. I’ve already noticed that my skin is not as dry and itchy as it has been for quite some time. I seem to have a bit more energy today, and less pain except for the leg pain I had the x-ray for. Hope to get results tomorrow on that.

I’ve only been on the med for a short time, but I am hopeful. I’ll keep you posted, dear readers.

>It’s Still Morning

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Still in my jammies, in a total fog, just wanting to go back to sleep. But my homemaker will be here in about an hour, I have to go back to the doctor’s to have more blood taken, and then to the hospital for the x-ray. Noooooooooo. Can’t I please just go back to bed? Apparently not.

This has been the month from hell. Well, not hell maybe, but it hasn’t been pleasant. Tired. So tired, all the time. Pain and more pain. I want to be functional again. I want my body to work. I want to stop whining. I feel like I’ve done nothing but whine the whole time. I hate whining. Where is my positive attitude? Vacationing in Florida maybe? I don’t know. It’s just not here when I need it.

Get up, get dressed, get moving. Just DO it, darn it!! Right. That’s working out for me. NOT!

>The Doctor

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Mine, that is. Saw him today. Getting a new med. I really hope it helps. I am so tired of feeling terrible. My thyroid numbers have been borderline for a long time, but when I wanted to pursue it, I was dismissed every time. This time, this doctor agreed that a trial of meds for it might be worth it. If it doesn’t help, at least I will have eliminated one possibility.

I’m also getting my knee x-rayed. He thinks it’s just arthritis, nothing major, but it has been making my whole leg hurt and walking is really problematic. I said maybe I need a cane, but he said no. Fine with me.

I like my doctor a lot. He takes time to listen to me, and to explain things and the reasons for different choices, different meds. It’s a good thing.

After, I had a lovely dinner and playing on laptop sessions at my friend Tess’s. She and her husband are getting over a cold, but I rarely get colds, so I’m not worrying. Besides, it was a really good dinner.

Oh, I canceled my cable and returned the box and remote today. I hate tv. I used to be addicted. Hmmm. That’s all.

>It Was A Cold and Windy Day

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Now it’s heading into a cold and windy night, as well. Last night a blizzard, tonight just cold but still the wind is over 20 miles an hour with higher gusts. Lovely. Of course, I don’t have to be out in it.

I am still having some pain, but in general feeling better. I think I was having a bit of Christmas depression. This year I wasn’t invited to my friends house for either holiday. Thanksgiving they were in turmoil with the new house, so that’s fine. No one is obligated to invite me to anything, anytime, but when you always do and then don’t with no call or word til Christmas Eve just to say hi and let’s get together soon, I think it kind of hurt my feelings a bit. Even though, and this is why I’m just so lame to be even a bit upset, I would have had to say no since I have been having so much pain and feeling like crap all over. I spent Christmas alone with the cat, on the couch, reading fan fiction, with a frozen dinner, Indian vegetarian. Tasty. I guess it just all got me down, the whole build up and then the day. It was really no Christmas at all for me. And I didn’t get one single Christmas cookie. What’s that about?

Usually I take things in my stride, I don’t know why this year was hard. I’ve missed out on the celebrations before due to the stupid illness, and it didn’t bother me that much. Feeling alone and lonely, maybe. I miss my husband. Sometimes life just gets hard to cope with. It’s the pain. I think that’s the problem. I’ve been in almost constant pain for a few weeks now, and it wears down your spirits as well as your energy.

So…get over myself and all will be well. I see my doctor next week and plan to have a discussion about my meds and what else can I do that doesn’t involve more pills. I’ve turned Workrave back on, so I will be reminded to get up and DO SOMETHING once an hour. That really does help motivate me. I can do something for fifteen minutes. Well, some part of fifteen minutes anyway, before the pain gets too much or I just run out of energy. Today I am cleaning the stove. One bit at a time.

And another thing. My computer has decided I now live in London. ?????? I wish, but hasn’t happened. I’m still here in good old New England.

>Three Things

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Woo Hoo. He signed. The START Treaty was ratified. Food Safety. There’s more. Our elected reps did the right thing. My Republican Senator crossed party lines and did the right thing, much to my surprise. I seriously underestimated him. It seems that personal conscience trumped party lines. That is such a great thing, especially since the Republican party line is so negative and so detrimental to the 99% of the country who are NOT their wealthy cronies. Sometimes I feel like they are trying to wipe the rest of us out of existence, so the fact the so many of them did the right thing for the country really makes me proud. I still won’t vote for them, but…..

ITEM 2: Here’s a link to another blog roll from the same folks who presented the top 50 Fibro blogs:

http://www.mastersinhealthcare.com/blog/2010/20-incredibly-educational-alternative-medicine-blogs/

Okay, little update here. Apparently a filibuster is NOT what we saw in Mr. Deeds Goes To Washington. Senators don’t actually have to stay there and talk to maintain a filibuster. This is just wrong. If it’s important enough to block, it should be important enough to stand there and tell us why for as long as you are blocking it. So here’s a petition to change that:

http://campaigns.dailykos.com/p/dia/action/public/?action_KEY=17

>An Interesting Article

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>This is about the overlapping illnesses that make up fibro/cfs, etc. No wonder it’s so hard to get a definitive diagnosis.

http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/overlapping.htm

It’s cold and snowing today. I am still having allergy issues. It’s cold and snowing. WHY am I still having allergy issues? Ah, well.

>It Was A Cold And Sunny Day

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Still is, actually. It’s 19 degrees F. It’s only 9 am. Up all night yet again. So the doctor gave me a new med, since I now have high blood pressure to go along with the other fun things. I googled the medicine, and apparently I’m not supposed to take it with Zoloft, my knock-out pill, or most of the pain-meds I use. So what am I supposed to do? Called doctor, waited all day, office person called and said to have my potassium levels rechecked. My levels were fine last week. What I wanted to know was what to do about the med interactions. Do people not listen when you talk? Do they use selective hearing?

I am also in a lot of pain from my ‘broken’ leg, which pain has of course referred itself to the entire rest of my body. Leg is only broken in the sense that I can’t really walk on it, and have been hobbling around for a week. Gee, maybe I should see a doctor. Okay, yes. I’m tired, cranky, in pain, and just fed up with the whole body not working right thing. FED UP!!

I do try. Really, I do. It is what it is. All I have to do is live with it as best I can. That works. Then, like every medicine I’ve ever taken for this, it doesn’t. I have found that just putting it down in black and white on this blog helps with my frame of mind, if not my symptoms. So whine, whine, whine. Okay. I’m done.