About excentric

I love sci-fi, music, reading, gardening. I am ill, but I am not my illness. Life is good. BTW, have I mentioned that I am a fan girl. Because I Am A FanGirl. Torchwood!

7: do you name your plants?

No.  They come with names.  Spider plant aka chlorophytum comosum, for example.  I don’t talk to them either.

Went out today.  Took the Comcast modem, etc., to UPS to be returned.  Christmas tree shop for things I didn’t know existed or that I needed when I found out.  My fav kind of shopping.  Lots of pain in spite of two ibuprofens, but had fun anyway.  Muggy, muggy day, but today the a/c decided to work, unlike the first time I turned it on, so not icky in here.  Very tired, very much missing Gertrude.  Oh, well.  Life goes on, right?  She is not suffering, so that’s a good thing.  I would not want her to be suffering.  2017-04-24 09.02.29

6: do you keep plants?

I have spider plants, which Gertrude liked to eat so kept them where she couldn’t get at them.  I have a Christmas cactus that Traci, my old homemaker, gave me.  It’s also where Gertrude couldn’t get at it.  It occurred to me yesterday that I don’t need to keep them out of reach anymore.

It’s been a learning experience, realizing how much I mentally monitoredCute when Asleepa Gertrude.  Where is she?  Did I leave anything where she can get at it and shouldn’t, is she out of the bedroom before I close the door, did I feed her, does she need fresh water, etc., etc., etc.  It’s a constant ‘Oh, don’t have to think about that, deal with that, worry about that.’  It was different when Simon died, because I had her, so the only thing that changed was that he wasn’t here anymore.  Now, it’s just me left, and everything has changed.  😦

No Question Today

Not been the best day ever.  Been in a lot of pain lately, and sleeping a lot.  Gertrude has not been looking well, and last night she had a sort of mini-seizure.  First time ever.  Took her to the vet, he found a mass in her stomach which was not there last time, and she weighed less than 5 pounds, poor baby.  He recommended, and I agreed, putting her down.  She draped herself over me which she never does while we were waiting, like she just felt so bad she couldn’t fight anymore.  So it is done.  Her treat crumbs are on the floor, a bit of food still in her dish.  I kind of knew, but still wasn’t really expecting it today, so I am kind of numb right now.  With Simon, I knew he had cancer and the time would come, with Gertrude, there was still the hope that it was just an illness that could be cured.  But no.  She was a good cat.  I am going to miss her for a very long time.  I still miss Simon, for that matter, and it’s been years.  Anyway, that’s how it’s been.2017-05-30 19.12.19

 

5: are you self-conscious of your smile?

Nope.  Well that was easy.

6927531    Not my smile, but it’s a gorgeous one.

I got FIOS yesterday.  Hooray.  So done with Comcast.  It took four hours to install, but about an hour an a half was spent dealing with maintenance trying to get them to come and unlock the cellar door.  I’d been calling all week and they did not return a call til 7:30 yesterday morning.  Need the cellar open by 1pm please.  No prob.  HA!  1 pm, Verizon guy comes, cellar locked.  I must have called maintenance ten times, first just to get them to call me back, then a huge rigamarole about ‘is he coming to open the door or not’, then she gives me the code to the lockbox.  Did not even know there was a lockbox, and why could she just not given it to me in the first place.  You used to go across the street to the locksmith and get a key, but that was too easy, I guess.  So guy goes down stairs, whoa!, there is no lockbox.  More phone calls.  Finally get told you have to go down the OTHER stairs, punch in the code, back up the stairs, down the hall, down the first stairs, and open the door.  Really?  REALLY?  Could you not have given me all this info from the get-go.  The maintenance guy is very nice, but the phone person is an idiot.  Verizon tech was very patient and friendly and nice, so it wasn’t a miserable hassle, just a hassle.  But it’s done now.

DD came down the day before and cleared out a space in the storage closet for him to put the box.  The modem is right outside it, and everything is wireless and so incredibly easy to set up.  It took less than five minutes to set up my FireStick, kindle, and kindle fire.  I remember the Comcast hassles.  I told the tech, I’d better love FIOS after all this time and work you put in.  lolol

Still a lot of pain going on, and some brain-fog, but I am not a complete lump on the couch, so it’s all good.  I just wish I could get some pain meds that worked and did not cause other problems at the same time.  Pain is not fun.

0007wedw

Almost deleted this day before yesterday.  I was quite upset over something, and felt like I’m just talking to the wall and what’s the point of blogging if nobody reads it or comments.  One person comments.  One lovely person in Tasmania.  I’ve been blogging for over ten years, and I have one commentor.  So I must be a crap blogger, to go along with the annoying person I was told I am.  So I was just going to give it all up.  But I am better today, and besides, it’s like keeping a journal, only public.  I suppose I could just make it private, but I need to think about it.  I’ve met (and lost) some nice people over these ten years.  And if I’m an annoying person, I’ll just have to try to do better.

I was thinking about Twitter and Facebook and Tumbler, too.  Why am I even on those. Very little feedback ever.  It’s not depressing, it’s not depressing, it’s not depressing.

Okay, done feeling sorry for myself.  Too much unrelenting pain does a number on you, emotionally as well as physically, so I just need to rally and stop being a whinger.  Done.

4: how do you take your coffee/tea?

Cream, no sugar. I do not like sweet drinks. Used to have a cappuccino maker, but now I just have regular coffee from the French Press. Aren’t these questions exciting?

coffeecoffeecoffee

 

Actually slept, and slept well last night.  Did NOT want to get up, but fill-in homemaker this morning, so had to.  Feeling a bit better than I have been, too.  Less pain.  Sleep really is crucial when you have fibromyalgia.  Getting good sleep is hard though.  I’m getting some valerian root to make a tincture that is supposed to help, and help with pain, too.  It uses vodka, so that may be the key ingredient.  LOL  I’m at the ‘yes, I will try any crack remedy that comes down the pike’ phase.  Nothing any doctor has ever prescribed has helped, except Prednisone, which isn’t supposed to work for fibro as far as I know.  And I have to get off it, anyway.

Much nicer day than yesterday.  Yellow air alert, not as hot, not as humid.  Just have the windows open and the fan blowing on me.This would have been great for yesterday’s post, but it’s never too late, right?  Fans are like little miracle-workers.  I have one that blows hot air so when it’s cold, I can just warm me, and not the entire room.

Little update.  It just occurred to me that I took two ibuprofen before bed last night.  That’s why I slept and slept better.  I have just been taking generic tylenol, and tylenol is not for fibro, but it’s all I’m supposed to take.  HA!  Ibuprofen works.  I just have to be cautious and make sure I’ve eaten before taking it, because stomach issues otherwise.  Exciting questions, exciting update.  It’s all good.  LOL

This would have great for yesterday’s post, but I just saw it today.  🙂

addicted-to-reading

what random objects do you use to bookmark your books?

I have bookmarks, but once in a while I’ll just use a small piece of paper.

2017-06-12 13.55.31-2

I know, the J is backwards.

I am so over pain, stiffness, and not sleeping.  I was up all night, almost fell asleep at 8, 8:30 and finally did around 9am.

Not having the best day ever, but my friend Tess came over to take my paperwork to Housing, since I am not at all capable of walking half a block.  We sat and chatted for a good while, in the damp heat.  I hauled out the dehumidifier, and it helps, but that and the fan do not actually cool anything down.  They have not changed the central air/heat filter in about three years, and my electric bill was very high this winter, I think because it was over-working, and the ac will just be as bad.  Besides, the units on the roof are really old and mine breaks down at least once a year, and I am worried it will catch on fire or something.  Maybe that’s what they’re hoping for.  I’m sure they have insurance for the building, but there is no insurance for me.

Anyway, Tess and I talked about Housing, and the political situation in this country.  She doesn’t usually like to talk about it, since her hubbies watches Fox News and gets upset about things all the time.  She hopes he’s not ‘one of them’ but he never really says, so she isn’t sure.  I’d hate it if one of my family was a Trump supporter, or even sort of agreed with the Republican agenda.  Not knowing may be best.  🙂  He’s a nice guy, whenever I see him anyway.

Was an orange air alert day today, but better tomorrow.  Will start cooling down, too.  Cannot wait.

Torchwood, before they ruined it by bringing in Gwen.

006f7k3w

Not a lot else to say.  I am in a lot of pain and just need to lie down and read some Torchwood fan fiction.  Or even a book.  I have loads of books that I am gradually plowing through.  Trying to reach my ’50 books this year’ Goodreads goal.  I used to read a lot more, then I found fan fiction and my Kindle, and so books kind of got the short end of the stick.  But I am a fast reader, with a wide-ranging taste in literature, so there’s always something I cannot put down til the last page.  Reading is my greatest joy in life, I think.  I remember wanting to read so very badly when I was really young.  I would pretend to read the paper, and agonized over not knowing how to actually read it.  My grandmother would read bits to me sometimes, and I think that helped with the figuring it out.  Once I did figure it out,  and ever since, I have read everything I could get my hands on.  Everything.  I can’t imagine not having something to read.

So off to the couch and my Kindle.  Have a good day, wherever you may be.

 

 

2: do you like the feeling of cold air on your cheeks on a wintry day?

freezing-cold

Yes.  I’d rather be cold than too warm.  Maybe not THIS cold, but still.  Picture is from buzzfeed.com.

Not really happy to say that I keep getting worse.  Woke up in a LOT of pain today.  Been sitting in the rocker with the laptop on my little white table.  All my joints are very stiff, making moving difficult and painful.  My shoulders…I can barely move my arms and it really hurts.  Not moving really hurts.  No clue what is going on.  This is different than the usual fibro woes.

I am rocking, Gertrude is vegging on the couch.  She is now eating the fancy-schmantzy cat food that she would not touch before, and I think it’s been a couple of days since I crammed a pill down her throat, and she has not been sick at all.  Hmmm.  She comes to tell me when she wants more food.  This is new, too.  She has decided she likes Marie, my homemaker, and actually comes out while she is here.  Does not do that for anyone else.  Not Tess, who’s been coming here since 2004, or my Traci, who came twice a week for eight years.  She is like a different cat since she got sick, but in a good way.  Weird.2017-06-11 12.56.09

Binge watching Inspector Lewis on Prime.  Did I say that before.? I love that show, and Endeavour, and Midsommer Murders, New Tricks.  Character-driven shows that are interesting and have some funny in them as well.  So much dreck out there.  I am going to be upset for awhile abut Sense8, too.  Stupid Netflix.

Switching to FIOS internet.  Much cheaper than I am paying Comcast, and will still be cheaper after the first-year rise.  They are coming on Thursday to install.  Building is FIOS-ready, so it shouldn’t be too involved, I hope.  I know they have to install a big box in the closet.

Typing hurts. so that’s it for today’s exciting update.  🙂

100 Questions Meme

importD3Found this here: kazzy-cee’s journal, from a post here: The Friday Five.

I’ve not been too enthused about blogging lately, since I get virtually no feedback, and I’ve been feeling quite abandoned in my real life as well.  Having a chronic illness does not make for a lot of friends.  The ones I had just seemed to fall by the wayside.  I still have one faithful friend, for whom I am truly grateful, but it is discouraging to just be alone almost all the time.  No emails, no calls, no visits, except for that one friend.  No one to say, ‘Hi, I was just thinking about you and wanted to check in.’ or whatever.  Such is life.

Anyway, now that I am done with the self-pity portion of today’s post, I thought I would try this 100 questions thing as an incentive to say something, even if I’m only talking to myself, which I do all the time anyway.  🙂

So first question:  1. When you have cereal, do you have more milk than cereal or more cereal than milk?  

Not the most exciting topic ever, but what the hey.  I don’t eat cereal a lot, but when I do, I slice a banana into the bowl, top up with however much cereal I want, then pour in whole milk (I do NOT do skim, low-fat, sugar-free, etc.  anything.  If I’m going to eat, I want real food.) till I can see it and the cereal has not quite started to spill over the bowl edges.  How exciting is that?

I have been struggling.  Since I went from seven to six mg Prednisone, I have been in a lot of pain, sleeping a lot, then can’t sleep, and very, very tired.  I then went down to 5 mg because I was already miserable, so might as well.  Going to stay on five as long as I can until my body decides to start making cortisol on it’s own, if it ever does.  My doctor’s PA prescribed Celebrex, after much resistance on my part.  The side effects are not good, and she gave me the highest dose, which is not recommended for someone my age.  Anyway, it eased the pain a bit for about four hours, then nothing.  It’s a 24 hour pill, and you cannot take anything else while taking it.  Took it two days in a row, same result.  Asked pharmacist if it is cumulative, as in the longer you take it, the better it works.  No.  It should just work right off.  So waited a few days, took it again, still no relief.  So done with that.  Right now I am just taking generic tylenol when I really can’t cope.  Cannot take too many ibuprofens or Aleve, because since they had me take the pill to keep it from bothering my stomach, which it wasn’t, it now bothers my stomach.  I have decided to not take any more new meds.  Period.  This is ridiculous.  Everything they give me makes me worse in different ways, not better.  The meloxicam caused severe lower back pain, the omeprazole killed my stomach, even though it’s the one that’s supposed to prevent that.  The celebrex didn’t work and has really bad side effects that can just happen without warning.  Not worth the risk for minimal pain relief.  They are just so insistent, and I am worn down from pain and fatigue and my resistance ability is not as strong as it once was.

Meanwhile, I am missing the summer, being pretty much house-bound again.  I think I would have been better off if they had not put me on Prednisone in the first place.  It’s been five years of hell.  Five years.  Over and above whatever the fibromyalgia is causing.

On the bright side, if I can think of a bright side today, I am trying a new version of Peet’s coffee which I am loving.  I usually drink Major Dickerson’s Blend, and I am trying Big Bang, which is quite nice.  Using my french-press, although some days I make a pot on the stove, and some days I use a filter over a cup.  Depends on my energy level and how desperate I am for COFFEE NOW!!!!  A couple of times, my new homemaker has made it for me, on the days she comes at 10am.   I am not awake at ten am, although my body makes an attempt at pretending I am.  Anyway, I told her exactly how to make it.  She followed my directions exactly both times, and both times her coffee was better than mine.  What?  LOL  She even boiled some eggs for me one day.  She is a real keeper, so I’m hoping she stays.  They do seem to come and go.  Being a homemaker is a shit job with low pay, no benefits, and they don’t get paid mileage between one client and another, which makes the actual pay even less.  I am as nice and grateful as I can be to them, because I would be living in a dump without them.  Some people treat them like servants, or slaves.  I’ve heard stories.  People can be real shits, you know, and why is it the people who do the actual work that get paid the least, and those who sit in the office doing very little get the big bucks?  It seems so unfair.

Anyway, I keep the coffee in the freezer, and just fill a small container to sit out and use everyday.  Stays nicely fresh a lot longer that way.

Started out a nice day, but is clouding up.  Up until maybe three days ago, it was nothing but gray for days on end, and as cold as October.  I had the fireplace on maybe three days ago.  It is June, Mother Nature.  But it’s not hot and sticky, so I will not complain.  I would rather be cold and have warm clothes and blankets and hot drinks and a fireplace, than be hot and sticky, because there is not a lot to be done for that.  Even air-conditioning does not really make it that much better.  It rained a lot, too.  We haven’t been having a lot of rain or snow the past few years.  It used to rain or snow for days at a time, but no more.  Until this month.  So yay.  You cannot convince me that the climate is not changing.  This year we had the warmest February, and the coldest May and now June, that I ever remember in all the years I’ve lived in New England.

Wow, once you get me started, I just seem to have a lot to say.  Okay.  So that’s the first question, and I will try to do this everyday, but some days I don’t even turn on the laptop, so am not promising anything.  🙂

Avoiding Everything

Hi

It was my birthday Thursday.  I did not spend it alone, I had a fill-in homemaker who was very nice and we had a lovely chat about our beautiful little town, and her son, and my illness (she asked), and it was fun.  The day before was the real celebration day.  My friend Tess brought me a two-serving cake from the grocers, as she does every year and we share it, some gorgeous yellow tulips

tulips (2)

some styluses for my new Fire HD tablet, which I love, btw, and a card.  I had the knee doctor with x-rays since it’s been a year since surgery.  It is doing fab.  Great doctor.  Then we went to lunch at the Irish Pub up the street.  I had a six dollar Guinness draft which was soooo good.  Six dollars for a beer seems a bit steep, but I don’t buy beer out very often, so who knows.  Then we went to the ‘we sell everything cheap’ store where I found two yellow t-shirts in the right fabric.  It’s hard to find a t-shirt that is soft and nice, and these are.  5 dollars each, too.  Yay.  It was a really good day.  We always have fun and laugh a lot, Tess and I.  Her husband thinks we’re batty.  Maybe we are.

Last night she called me and I started scrolling through the Country Living page on the laptop, and we got hysterical laughing over some of the things on it.  Beautiful houses and grounds on there.  One advertised it had interior doors, which seriously cracked us up.  We imagined how to get from room to room with no doors.  Windows. Out one, in another, was our best guess.  ‘Dear, could you open the window for me?  I need to get to the kitchen to start dinner.’  Interior doors.  I think they mean actual doors, not doorways, but it was really funny at the time.  ‘Yes, we have interior doors’ is just hysterical.  Really.  LOL

Today I was tired and not as well as the past few days, but I cooked something, so that was a plus.  My cooking has changed drastically.  I made this cornbread thing.  I once would have measured everything out and done it right.  Today I used Jiffy cornbread mix, slugged in a bit of oil, the egg, and was meant to use an 8 oz can of crushed pineapple, some chopped ham, and a drained can of whole corn.  Only had creamed corn and was going to use it, but was concerned the batter wouldn’t fit into the pan which had to fit in the toaster oven since my stove oven is kaput.  So no corn, chopped up some leftover proscuitto I bought since I’d never had it and what a disappointment that was.  And the pineapple.  Drained it, the liquid was a bit more than required but dumped it in anyway, and started to scoop out something like less than half the pineapple, since it was a 20 ox can (they never have 8 oz cans anymore) and said to hell with it and dumped it all in.  Yes.  This is how I cook.  Just get it over with because if I have to stand here one more minute I am going to collapse from pain.  Turned out really good.  Not everything does.  Amazing how you can just kind of fudge things and still get something relatively edible, though.

So it was a pretty good birthday and couple of days surrounding it.  I am happy.  Oh, and my fill-in homemaker made my day.  I mentioned it, and my age, and she had thought I was around her age, which is in mid 50’s.  I turned 73 on Thursday.  Woo Hoo.  LOL

Poor Gertrude

2013-12-12 00.12.54 (2)

Got shut in the bedroom.  First time this has ever happened, but I think my homemaker left the door open while she was vacuuming, and Gertrude saw her chance and took  it.  Maye she’ll think twice next time.  Or not.  LOL Homemaker leaves at one.  I  just realized she was in there right before 9pm.  I kept hearing scratching, and put it down to several things over the past few hours, but I was about to answer an email when I heard it again.  Turned to see if she was scratching on the door to get into the bedroom, which she does a lot and I had checked several times already.  Suddenly it dawned on me.  She is IN the bedroom.  Poor baby.  I think she slept most of the afternoon, which she does a lot, and it’s only been the past few hours I’ve been hearing the noise.

Spring Has Just Sprung Up Suddenly

spring has sprung
After weeks and weeks of cold and gray and cold and windy and cold and rainy and cold, did I mention cold?, today it is 73 F (23 C, I think) and is going to be above 60 (16) all week.  With sunshine.  Actual sunny sunshine.  Wow.  I am impressed, Mother Nature.

MIL60024//1

I bought some just like these on Saturday.  It’s like sunshine in the house.  I put them where I can see them when I wake up.  Nice.

I am still struggling with pain and fatigue, although I think it’s leveling out a bit after three weeks on 8mg pred.  Of course, today I went down to 7.  I have to get off this.  I just have to suck it up and get through the really bad days without giving up.  I would have gone down to 7 1/2, but I just didn’t have it in me to cut all those teeny pills in half.  It’s bad enough trying to quarter Gertrude’s, cause they are really small and pretty much just crumble.

rsz_back_pain
This is not my back. 🙂 I have the pain clinic on Wednesday.  More shots in the back.  I hope they help more this time, because I can barely stand.  I just read, and had forgotten, that shots in the back with meds from a compounding pharmacy here in Mass, killed or injured several people a few years ago.  The owner was just acquited of murder, but went to jail for a bunch of other charges.  So I am nervous now, but I think after this, they are probably pretty careful, she said optimistically.  I need to be able to stand and walk with less pain than I’m having, so I’m going.

Well, actually, just took a few minutes to google, and Mayo Clinic and WebMD seem to think they are not really a long-term solution, and there are some significant risks besides greedy pharmacy companies sending out meds with fungus in them.  Ewww.  So I asked my friend Tess what she thinks, because there’s nobody else to ask, and I always like to get a second opinion, because I have severe brain fog sometimes and just THINK I know what I’m doing.  🙂 Waiting to hear back from her.

It’s really disheartening to see how little integrity there is left in this country.  Everyone is out for as much as they can get, and to hell with the consequences, because there don’t really seem to be a lot of consequences.

But it’s finally spring and I am NOT going to dwell on the bad stuff.  The trees, what’s left of them, should be in bloom soon.  That’s always a happy thing.

I am off to make the shopping list, and prepare the return box for the Rubik’s cube I got instead of the desk vacuum I ordered.  Weird mistake to make.  The Rubik’s cube looks like a Rubik’s cube, Rubiks_cubeand the vacuum looks like a mushroom.

41QJqJv0fCL._AC_US160_Hmmmm.

I almost kept the cube, but I’d probably drive myself bats drying to solve it.  So no.  🙂

Is April!

Woke up to this:

sweetpeaaprilApril is my birth month, and this has been a favorite song since I was very young. I think my grandmother must have taught me it. This is the only version I could find that sounded like I remember it. You can stop after 0.50 seconds.

I have been having a hard time adjusting to the lower dose of Prednisone.  Slept for three days last weekend, not straight through, but mostly.  Last night was awake most of the night due to those random pains that I haven’t had for some time.  I have been mostly non-functional.  Spoke to pharmacist about this, she suggested I get a second opinion on dealing with Prednisone, since my doctor and I cannot seem to understand one another.  Monday I go down to 7 mgs.  Let the fun begin.

So Spring is Sprung, the grass is riz, I wonder where the flowers is. 🙂 It’s April, my favorite month after October, because Autumn.  🙂sweetpea24

I Have Made The Best Soup Ever

In spite of getting up at 11am, needing to lie back down for some time after showering, eating, feeding the cat, etc., I eventually got enough energy to cook some things that I needed to before they went off.  Bacon, because I am going to make bacon apple cheese patties (she said confidently), and then I used the same iron skillet (you cannot go wrong cooking in an iron skillet) to cook a pkg of ground Jones Sausage for the soup.  Thought I would have to frig it for tomorrow, because major pain and exhaustion.  But I just needed to throw in some chopped onions, which were in the freezer thank you Marie, and then I just needed to chunk some fresh mushers and let it cook a bit.  Good. Several short sit-downs during that and now a longer sit down while they cooked a bit.  Might as well add the can of pumpkin.  Okay, may as well throw in the quart of chicken broth. More sitting while it simmered.  Let it cool, put it in a bowl for the frig.  Barely fit in the biggest clean bowl I have.. Whew.  Someone needs to unload the dishwasher so I can load all the dishes that are piling up because I am cooking.  I can load it, but unloading takes more wherewithal than I usually have available.  I an cook, but I can’t normally clean up on the same day, anyway.  Decided to try soup. You’re supposed to add heavy cream and sour cream, but I just scooped out a bowl and added a bit of each to it.  OMG.  This is the best soup ever. I forget where I found the recipe, but it’s 12 oz Jones sausage, 1 chp onion, 1 minced garlic clove (I was in too much pain to mince a garlic clove.  This is my life, people)  1 pkg button mushers, I just kind of chunked them up.  Cook a bit.  Add a can of pumpkin and a quart of chicken broth.  Simmer on low 30 min.  If serving it now to several people, add 1/2 cup heavy cream and 1/2 cup of sour cream after  it’s off the heat.  It is SO good.  yay, meI am very pleased with myself for not just giving in to the pain and exhaustion and actually getting something done.  I also today found my Command Strips that I’ve been looking for, and my grated cheese, which had somehow got shoved to the back of the freezer.  So it was a good, if painful and exhausted day.  Yay, me.

Yay me. I think.

This is Peabody, Mass., from the first winter we were here in Massachusetts. It snowed for three days straight. More snow in one fell swoop than I’d seen in my entire life put together. (I was 24) It was gorgeous. One of my fondest memories, standing on our second floor porch, watching huge flakes fall by the light of the streetlights. Lived 20 miles or so south of Peabody, and I think we got more snow than they did. it was fantastic.

feb 27 1969 peabody ma

Today I am cooking.  I cooked yesterday, too.  Well, I made oatmeal cookies, which took probably two hours, not including baking.  Stuff in bowl, sit, add egg, sit and stir, rest, mix dry, sit, add dry, sit some more.  Pain and fatigue.  It is so fun.  Two weeks ago, before they made me decrease the Prednisone, my pain was about a 3, and I didn’t even need pain meds every day.  Now, my pain has been a 7 for several days, and tylenol in the morning, ibuprofen at night, and sit, sit, sit.  Or lie on the couch.  But I did get some stuff done yesterday, mostly sitting down stuff.  Today I got even more done, but my homemaker was here and did a lot herself.  Mainly I rearranged some small things, and the cooking.  I baked the cookies, I am making apple crisp (Marie peeled and chopped the apples.  Thank you, Marie.)  And I baked Gorton’s crab cakes, which are something I had not seen before.  I like their fillets.  And I microwaved some green beans with almonds.  Green Giant.  You know, the Jolly one.  Ho Ho Ho.  They’re from his valley, apparently.  So now there are dirty dishes all over, and unless I have a burst of energy later, they will still be there tomorrow.  Marie did not have time to unload the dishwasher, and I am too tired.  This is the life with chronic, debilitating illness.  I am determined not to give into it until it gets too bad not to.  I must decrease the prednisone again Sunday, from 9mg to 8, but one week on 9 is not nearly long enough to adjust.I would prefer a couple of months, but as it is I am defying my doctor by doing this extra week.  By the way, the crab cakes are not bad, but need a sauce or something.  The green beans are just ewwww.  Oh, well.

nope

It was a gorgeous bright sunny day, even if pretty darn cold.  Spring is springing, once we get out of the deep freeze we’ve been in all month.

Little edit.  I forgot, until I just had a teeny taste, that I had grabbed the cayenne pepper instead of the cinnamon.  My apple crisp has a bit of zing.  It’s not a bad thing.  🙂

 

Illness Ramble

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.