Where have I been?

…and how could I have stayed away so long?

Well, I’ve been at home and at work…oh, and doctors’ offices.  Other than the grocery store, CVS, and Pet Smart, that’s just about it.  Still not feeling great.  I think the respiratory issues that have been plaguing me for several years have eased up.  Could be all these crazy herbal concoctions I’ve been making and taking…maybe…Now if only I could find something to get rid of the pain.

Yep, the pain is still hanging around.  If anything, it’s getting worse.  My PCP actually ordered x-rays of my shoulders (rheumatologist kept talking about it but didn’t do anything about it).  The x-rays didn’t show anything really terribly wrong other than osteoarthritis, but I’m seriously wondering if an MRI would show something else.  I need to sit down and do some research on this.  I’ve had several folks tell me that their doctors have told them (you know, that whole “well, I heard it from her who heard it from him who read it in that article…”) that often x-rays aren’t the most reliable diagnostic tool for shoulder injuries.  So, research before I see the rheumy in June is in order, I do believe.

There are days when I have a very difficult time even lifting my arms.  My PCP put in a diagnosis of frozen shoulder.  When I read info about that, I can see how that would be a possibility.  She put in an order for physical therapy.  Three or four days a week for two or three months…yikes.  When I called the insurance company to make sure it was covered, the lady on the phone was just so happy to tell me that it was.  Good, right?  Um…well…hold on a minute.  When I asked what my fees would be, she told me $50.  Alright, I can swing fifty bucks.  Then something made me ask if that would be my total cost.  Then she said, “Per visit.”  Hold on, hold on…so we were looking at $150 to $200 a week for two or three months.  No can do.  I just can’t afford that.  So I called my doctor back and told her.  She printed out some exercises for me to do at home.  I’ve been doing them, but honestly am feeling more pain now than when I started.  That’s what makes me wonder if there’s something hidden that’s causing the problems.  But I’m going to continue with the exercises my doctor told me about.  After all, the initial physical therapy order was for two or three months, so I’ll give it that.

Green juice

In the meantime, I’m making a serious effort to eat much, much healthier.  More fruits and veggies, less sugar (the aim is to eliminate as much sugar from my diet as possible as sugar seems to feed inflammation).  I’ve been drinking herbal infusions…some pretty good…some, oh shall we say…not so good?  I’ve always been interested in the healing power of food and herbs and my health problems have brought me back to seriously studying both.  I feel like I’m learning a lot, but I’m being cautious to get information from several reputable sources.  There’s so much out there that has no scientific backing and, while I’m not the pharmaceutical industry’s biggest proponent, I am a believer in scientific studies and findings.  There are several herbalists who have been doing this for years and who combine their working knowledge of herbal remedies with the science behind why certain herbs are beneficial in certain situations.  I’m even taking some classes and seminars…I’d lost track of how much I enjoy learning.

Just wanted to update my pals (that’s you all) with what’s been going on and why I haven’t been around a lot.  I’m definitely going to make the effort to post on a more timely schedule.  Maybe not every day…heck, what am I saying?  Definitely not every day, but at least a few times a week.  So see you the next go-round.

Nightmare in B’town

Dr. House’s Vicodin Dream (Photo credit: Totally Severe)

I saw the rheumatologist on Thursday.  After talking about how much pain I’m in every day, she gave me a prescription for Vicodin.  Am I like the only person who had never taken this stuff before?  Seems like everyone I work with had taken it and had either advice or horror stories to share with me.  I picked up the prescription after I got off work on Friday and took one when I got home (I avoid trying new meds until I’m at home and don’t have to go anywhere…you never know what’s going to happen).

I went about my evening and, a couple of hours later, noticed that my pain levels had diminished…okay, that’s a good thing, right?  I felt a little bit odd, but still…nothing too bad.  When I went to bed, I read for a while.  When I felt like I could go to sleep, I turned the light off and settled down to try to sleep.  Of course, Spook and Scout were right there with me.

Well, I tossed and turned, unable to go to sleep.  I eventually turned the light back on and read a little more, then tried the whole going to sleep thing again.    This time, there were fragmented pictures flashing behind my eyes, one after another, so fast I couldn’t really see what the pictures were of.  Then suddenly a deformed monkey reached out for me…he was clearly visible, then he disappeared and the broken pictures began falling apart and reforming behind my eyes.  All of a sudden, a face, with mouth wide open in a scream, surged toward me before spinning away only to be replaced by the pieces of pictures again.

This went on all night, every time I closed my eyes to try to go to sleep.  I must have finally dozed off.  When I woke up there was a pool of blood right where Spooky had been sleeping by my pillow.  I began calling for her, worried about her.  There was no way a kitty as little as she is could lose that much blood and still be alive.  When she walked up from the foot of the bed, I had to check her over.  Of course, everything was fine.  Oh…and when I glanced at the pool of blood…yeah, you got it…it was gone.

I kind of felt like I was playing a part in a Stephen King book.  Hey, wait…I can probably use this in a book…perhaps a bit more gruesome than my normal writing, but when you have the story line you need to run with it.  Oh…and…uh….yeah, I didn’t take the Vicodin before I went to bed last night.  Thought I could do without another nightmare in B’town.

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Giving in to the pain?

Dr. Miles’ Anti-Pain Pills, Edmonds Historical Museum, Edmonds, Washington. (Photo credit: Wikipedia)

I have several doctor’s appointments coming up over the next couple of weeks.  And you know how much I’m looking forward to that, right?  The thing is, I find myself  blaming the doctors because I’m still in so much pain every day.  It feels like they’re not really taking it seriously.  I know I haven’t been actively seeking medical treatment for the pain for all that long, but I’ve been In a lot of pain for several years now.  Maybe I need to stress that when I see the various doctors this month.

There are days I go to work wondering how I’ll make it through the day.  Granted, I’m usually able to survive the entire day at work, but at what cost?  Sometimes I cry all the way home.  Other days I manage to work my way through the basics before I collapse in bed.  Isn’t there something the doctors can do to help ease the pain?  I’ve been on Celebrex for several months now…it’s sure not doing a lot for me.  Can’t we look at what I’ve already tried and find something different that might work?  Why keep prescribing the same thing when we know it’s not helping?  And why am I so dumb that I keep taking drugs that don’t do anything for me?  Why can’t I just tell them I want something stronger?

I understand that the doctors are trying to find meds that will work at the lowest possible dosage…I get it, I do.  In the meantime, what?  Just keep hurting?  Just keep on not being able to sleep?  Just keep trying to make it through the day in a fog of fatigue?  Most of the time I find myself giving in to the pain, thinking that I’ll just have to live with it, that there’s no help for it or for me.  Whew!  Do I sound like a whiny brat, or what?  Hey, there are times that the pain will do that to you…

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Thankful for a good doctor

“Shining a light on Rheumatoid Arthritis” by mimitalks, married w/children (Photo credit: mimitalks, married, under grace)

I’ve mentioned before that I have a relatively new doctor.  She’s the one who added up all of the symptoms I’d been experiencing and ordered the tests for autoimmune diseases.  And she’s been willing to battle the insurance company to get drugs that she thinks will help me (still waiting on that magic elixir though).  She’s been able to fit me in when I’m feeling particularly terrible.  I can’t complain about her care, that’s for sure.

Today I had to call her office to see if she could write out a statement to give to my boss about some of the things I can’t do at work right now (his request).  I left a message and her nurse called me back a couple of hours later, asked a few questions, then told me they’d have it ready for me to pick up tomorrow.  That’s some pretty good service, don’t you think?

I have to admit, I’m concerned about my job.  I know I can’t do the things I was doing even a year ago.  And I know it has to frustrate my boss.  After all, the work still has to get done.  In my defense, I am doing various tasks that aren’t part of my job description, freeing up time for other people to do some of the things I can’t do.  But I’m afraid that’ll only go so far.

I know, I know…I’m worrying about things that may never happen.  I see the specialist next week (finally) and she may be able to snap her fingers, write out a prescription or two, and have me back to my old self in no time.  Could you maybe keep your fingers crossed that it happens that way?

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RA sucks

If you have RA, you already know how much it sucks.  If you don’t have it, or some other condition in which you experience chronic pain (and don’t know someone who does), well…then you really have no idea.  I had the weekend off work.  And, of course, I had all these plans about what I was going to do with my free time.  We all know what they say about the best laid plans, right?

I spent the weekend in some of the worst pain I’ve experienced.  My left ankle froze up….I couldn’t bend it at all and it was pretty darn painful to put any weight on it.  That kind of threw a big monkey wrench in the weekend plans.  I just sat around most of the time.  Well, that and took naps.  Of course, I couldn’t really sleep because anything touching various parts of my body caused some pretty intense pain.  That makes a gravity-free chamber sound like a worthwhile investment…I’m just afraid something like that would probably wipe out my life’s savings and I might just need that money down the road for silly little things like, oh I don’t know, medicine?

I woke up this morning before the alarm went off.  I think the sounds I made when I tried to roll over scared at least one life out of the cats.  They both sat up and stared at me, wondering what language I was speaking and what it meant.  When I finally was able to struggle to the side of the bed, I tried to stand.  I’m thankful I never put full-length mirrors in my bedroom.  I’m pretty sure I was hunched over like a 90-year-old woman.  After hobbling around for a couple of minutes, I knew I wasn’t going anywhere today.  So I made the dreaded call in to work.  Fortunately, there were no threats telling me I better get in there or else.  Seriously, I’m lucky to have a great boss.  He’s understanding…or at least as understanding as someone who knows very little about RA can be.

After placing the call, I used the furniture and walls to support myself as I made my way to the bathroom.  I thought about going downstairs, but gave that thought up and climbed back into bed.  I couldn’t really go back to sleep, but Spooky snuggled up next to me, emitting her warm, healing cat vibes.  Amazing how much it helps to have a pet right there with you when you don’t feel well, isn’t it?

I finally struggled back to the bathroom and took a hot shower.  I really wanted to soak in the tub, but I was afraid I would have to crawl out of it today and that didn’t sound all that appealing to me.  I did finally get dressed…well, sort of…if you consider putting on a clean pair of pajamas getting dressed.  I think that’s as close to getting dressed as I’ll get today.

I made my way downstairs and fed the cats.  I looked at the juicer sitting there on the counter but couldn’t dig up enough energy to make some fresh juice.  I did have tea in the fridge that I’d prepared the night before for work.  What the heck, it’s wet.  It works just fine to wash down that handful of pills I take every morning.  And who knows?  Maybe I’ll feel like making some juice later on…it’ll taste just as good later in the day.

When I sat down at my computer, I started reading and replying to the posts of some of my favorite blogs.  That’s when it hit me.  I still have a week and a half before I see the rheumatologist.  I have no idea what to expect.  I do know this first visit won’t be that magic cure we’re all hoping for.  I think, in the back of my mind, I’ve been telling myself that once I see the rheumy, everything will be better.  I’ve read enough of other people’s experiences to know that that’s not likely to be the case.  So I’ve just got to suck it up and accept that this is apt to be a bumpy road. Guess I’d better look around and see if I can find a soft cushion to help me tolerate those big, bad bumps in the road, huh?

 

 

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Week end update (non SNL version)

Juice Machine with Fruit (Photo credit: careyelaine)

We’re just about at the end of another week so I figured it was time to post a little update.  I know I haven’t been posting as much as I had been.  Seems like I come home from work just exhausted every night.  I do what I have to do at home, get online for just a bit, then head upstairs to bed around 7 or 7:30.  That’s ridiculously early, isn’t it?  But that’s the only way I can make it through the next day at work.

This was kind of an odd week at work.  We had two managers on vacation at the same time.  Believe me, I put in enough hours to cover for both of them.  I ended up calling our DM early in the week to okay overtime for myself.  I knew there was no way to get the work done in only 40 hours.  And yes, I know, overtime is probably one of the last things I should be doing for my health right now.

I finally broke down and ordered a juicer after researching them for weeks and weeks…debating myself about whether or not I would actually use one enough to justify spending the money.  I finally decided to take the plunge…I’ve really had no appetite of late and often find myself consuming 800-1000 calories a day.  I know enough about nutrition to understand that’s not likely enough to get proper nutrition…so…the magic elixir steps in…juice.  I haven’t used it yet although I did unpack it this morning,  washed it, and read through the instruction booklet (ooh…I see all my guy friends rolling their eyes at that!!).  I’m getting ready to make a juice recipe that I found on SparkPeople.com that has a lot of veggies in it as well as an apple.  I’ll let you know how my juicing experiment goes.

One very positive note, I’ve managed to lose some weight…18 pounds in the past couple of months…see, there are a few advantages in being sick!!

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A pretty good day!

After spending the entire week in pain…not just minor, everyday aches and pains, but pain where I was wondering if the cats would be alright if I didn’t go downstairs and feed them because I hurt too bad to maneuver the stairs…I was shocked when I woke up this morning.  I laid there for a minute, afraid to move.  I didn’t have the throbbing pain in my hip that was just waiting until I made the slightest move so it could once again attack me.  My hands were stiff (they always are), but there were no shooting pains running down my thumbs into my wrists.  My shoulders didn’t feel like they would be dislocated at any moment.  My feet were sore, but not screaming in pain simply because the comforter was on them.

Wow!  I hadn’t felt that good upon awakening in a long time…months really.  So I slowly rolled up until I was sitting on the edge of the bed.  When I stood up, I still hobbled around like an old lady, but at least not an old lady in unbelievable pain.  I even managed to do a little housework today…more than the bare minimum which is what I’ve been doing for, oh gosh, what’s it been?  Six months?  I cleaned the tub (after a nice long soak in it), vacuumed the bedroom (even moving some of the furniture), went through a couple of piles of stuff and tossed out most of it (why do I save things like catalogs and magazines?  why not just throw them out once I’ve looked at them?), dusted the upstairs, took some things off the walls to either donate or sell (I’m tired of looking at things, don’t you get like that?),  and hung this organizer I bought months ago to put my nail polish in (the nail polish I haven’t used in months…but I will).  I’m pretty pleased with how it displays all of my polish for me…no more digging for just the right color.  Of course, I had to climb up on a step-ladder which was a little scary…I’ve been having dizzy spells with the various meds I’m on, so ladder climbing is supposed to be a big no-no for me.  But I’ve got Spooky trained to call 911 if anything happens, so it’s all good.

Looks so simple, but has taken me months to do.

I must admit, I did take a few breaks throughout the day, but I’m still feeling pretty good.  Pain level between 1 and 10 (10 being excruciating), I’d say I woke up at a 3 and never went over 5 for the day.  I think that’s a reason to celebrate…hmm…maybe I’ll do that by digging out some nail polish…

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No further info…

Atrium inside Mayo Clinic Gonda Building, Rochester, Minnesota (Photo credit: Wikipedia)

Well, okay…that’s not exactly the truth.  What I should have said was that I have yet to see the specialist so I’m not really sure where we go from here as far as the medical treatment goes…but, as you can see, that would be entirely too long for a title.

However, I do have information…I had no idea there was so much info out there about RA.  (Makes sense since I never really gave it a thought before, right?)  My first stop was the website of the Mayo Clinic and there’s an abundance of information there.  I’ve also visited the sites of several other hospitals (Cleveland Clinic being one since I have a friend who has a son who was treated there for several years and I know how well-respected their pain management program is) to gather info.  I’m trying not to become immersed in this…I’d prefer it not control my life.  But knowledge is power….who said that, anyhow?

And then there are the blogs!  Oh my goodness, I had no idea how many wonderful people are willing to share their journey with us.  It really does help to hear from folks who live with this from day to day.  Doctors are one thing, having gone to school and been in practice for a while, but people who live with rheumatoid arthritis have a unique perspective.  Those who are in the trenches are sometimes better able to provide encouragement and suggestions.

After doing some research, I realized how dumb I was.  When the doctor told me it was rheumatoid arthritis, I thought it was no big deal.  I’d be able to pop a few pills and continue on my merry way (and that could be what happens…will have to see how it runs its course).  Then I began reading.  Whoa!  I had no idea it could be so serious.  But, I’m trying to remain positive…no use worrying about things that may never happen.  See the specialist and then proceed from there.  Hey, really what else is there to do?

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Some answers

English: http://rheumatoidarthritis-symptoms.com – Rheumatoid Arthritis in the hands (Photo credit: Wikipedia)

When I think about how I’ve felt in the past six months (really, six months…hard to believe) and how many doctors I’ve seen during that time, I get to feeling a little discouraged.  I start asking myself if we’ll ever figure this out.  Well, I got a few answers this week.

I saw my doctor Monday because I was in so much pain…joint pain…just about every joint in my body.  She had me move around, doing some range of motion movements.  Then she said she wanted me to have some lab work done, checking for autoimmune ailments.  I went down to the lab where the tech proceeded to take about a gallon of blood (okay, I may be exaggerating a bit), vial after vial.  She said they’d be able to do some of the testing themselves but would have to send some of it off.

Then they called me later in the week to let me know that just about everything came back normal with the exception of the markers for rheumatoid arthritis.  So, okay…I don’t really know a lot about rheumatoid arthritis, but it doesn’t sound like it’s as bad as some of the other things.  Of course, that’s me talking when I know very little about it.

My doctor is setting up an appointment with a rheumatologist (?) for me, so I’ll know a lot more then…at least I hope I will.  I’ve put off doing any online research about it, not wanting to worry myself…the old ostrich with its head in the sand thing.  I suppose I ought to do a little research about it soon, you know, so I at least know what questions to ask.

I’m not sure if this is THE answer, but at least it’s part of the answer.

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She’s baaack!

Before you say anything…I know I’ve been MIA for much too long. April has been an extremely hectic month! I went back to work after being sick for two months…believe me, that wasn’t (isn’t) easy. I’m still not at 100%, but I’m getting there…slowly…

And, being the crazy chick that I am, I decided to do another Camp NaNo during April…yep, you read that right…writing 50,000 words over the course of the month. I managed to hit 50,378 today…early, well, at least a little early. Some of it’s good, most of it’s not…but the whole point of NaNo is to simply write…and I did do that. And I think I may come up with, you know, maybe 10,000 publishable words from this month’s writing…maybe.

Now it’s time to focus on my health…I’ve got a big, several-hours-long pulmonary test coming up on the 9th and maybe then we can figure out what to do to make it a bit easier to breathe and do something else at the same time…in the meantime, I’m trying to eat healthier and exercise as much as I can without negatively affecting my breathing.

And speaking of eating healthier…let me ask you all, do you use a juicer? If so, what brand? Pros and cons? I’m trying to eat more organic foods and working diligently to avoid GMOs and making my own juices would be another step in that direction.