Wendesday July 30, 2008

Oh today is a bad, bad day.  I ache everywhere.  And my eyes are swollen.  My eyes are the only organ the RA has invaded that we know of.  I get what look like broken blood vessels in my eyes and they hurt to even move.  I always thought it was a run of the mill broken vessel but Dr F checked then told me it was the RA making my eyes inflame.  Great. 

So sore eyes, painful joints and my muscles ache like crazy.  Plus, I think I’m getting a summer cold which isn’t helping.

Today’s pain level is a big whopping 9.  I never give a 10 unless I’m bedridden.

July 25, 2008

Wow!  It’s been exactly a month since my last post.  I didn’t think anyone even read this blog but I actually got an email.  Guess I’d best do better on posting.

My pain this time of year is actually much more controllable.  It’s dry and hot here in the South.  I’m getting a little better sleep the last 3 weeks or so.  My pain management doctor upped my Lyrica a bit and it’s helping.  I’m sleeping about an hour longer.  So I’m now up to a total of ~5 hours per night lol.

The arthritic spot in my back has been giving me more trouble of late.  I think I’ve been overdoing it.  I have a tendency to do that when I feel better.

Day before yesterday was my check up with the rheumatologist.  It went very well.  I’ve been neglegent getting my bloodwork done.  Shame on me.  My last sed rate from almost 3 months ago was 43.  Way too high.  I haven’t been that high for a long time.  But it was quite rainy that month so that might be why.  I had new bloodwork done yesterday.  Hopefully everything’s okay there.  Or at least better.

I’ve lost 9 pounds!  I don’t mind being heavier.  I think I’m cute when I’m pudgy   But my knees, hip and back are suffering for the extra weight so it’s time to change things.  My blood pressure was also right on the money this visit!  It’s usually pretty high.

My general practitioner also increased my anti-depressant medication by double.  I was having some serious issues coping.  It seems to have helped immensely.

I would mark today’s pain level as 5.5 which is pretty good, I think.

June 25, 2008

My pain level today is about a 6 but the fatigue is nearly off the charts.  Has been for weeks. 

One of my cats is having health issues.  She’s been diagnosed with feline diabetes.  This has caused much anxiety in my life.  I will cope though.  She’s a sweet little thing and I’ll do whatever I can to help her. 

I’m hoping that if I can ever get my sleep regulated again, the fatigue will ease.

I’ve Been Bad

Okay, okay so I haven’t written in a long time.  I’ve been busy.  My pain is actually fairly well controlled recently, hovering around a 5 which is amazing for me.  Perhaps it’s because I’ve been distracted.

We have a kitten that just turned a year old.  Yeah, I know, that makes her not a kitten anymore.  She’s had pretty much nothing but health problems since she showed up.  The vet was afraid it was FIP (feline infectious peritonitis) but it is looking more like diabetes now.  He still says he thinks she’s an FIP case.  Lord, I hope not.  Diabetes can be managed even though it’s a pain in the neck.  FIP has a mortality rate of near 100%. 

So I’ve been taking care of this cat.  Hopefully I’ll be writing more regularly soon.

The Other Half

I’m pissed.  Not as pissed as I was yesterday but I try not to write when my husband is home.  This blog is supposed to be a pain diary and a place for me to bitch. If I sit here and  I type too much he asks questions.  This is my private place.

Anyway, what am I pissed about?  People who are just nasty.  Actually, I think the situation that aggravated me actually stems from jealousy.

I run a crochet website which has a blog attached to it.  It’s a nice little blog that I use to talk about things that are non-crochet related.  Things that I’m up to or am thinking about.  I keep it strictly “G” rated over there and play the part of “Little Miss Sunshine”. 

I’ve been redecorating our house.  We bought this house near three years and nothing’s ever really gotten done.  The redecorating project is one of the things I talk about on my blog.  I made mention that I was gonna go scout the second hand furniture stores.  I’m wanting a new dinette set, a china storage cupboard and a love seat.

Well, some witch I don’t even know made the comment that “real spring cleaning doesn’t require new furniture”.  Nowhere did I say a damn thing about spring cleaning.  I’m not spring cleaning per se.  I reorganize things constantly.  That’s part of my personality.  But I’m not spring cleaning.  I’m redecorating.   Redecorating usually does require some new pieces of furniture!

I really don’t know exactly why the comment got under my skin so much.  It was just rude.  I didn’t ask for advice.  I just posted what I’d been up to for crying out loud!

I am very active on a certain crochet board on the web, too.  I was talking with the ladies over there about the decorating.  A couple of days later, a gal that I consider to be a real friend, visited a friend of hers.  She came home and felt lousy about her house because her friend’s house is well decorated and organized. 

My friend works very hard as a SAHM.  She’s got four kids and acerage where they raise small livestock, too.  Her house is clean.  She’s great gal and I don’t think it was even remotely aimed at my comments on the redecorating. 

Well, to cheer her up (I know that’s all it was about) the other ladies started basically bad mouthing folks that do have what I call “a well appointed home.”  They were saying that living in a magazine photo is uncomfortable and uninviting.  They made comments about someone who lives in such a home as not having their priorities straight, that they are anal, they’re overly concerned about appearances and not happy people.

I’m one of the happiest people around.  My sister gets sick of me being so “up” at times.  I really don’t complain much, despite this blog lol.  But I’m human.  I get angry but I don’t have to be a horse’s ass about it and make everyone around me uncomfortable.

So, why do I want my house redecorated?  One, because I like to decorate.  Always have.  For my 12th birthday I asked for, and got, slipcovers for heaven’s sake.  My room was always the best looking room in the house.  My mother was always an officer in God only knows how many different things.  Things at church, the hairdresser association.  She had study groups when she started out to become a cosmetology teacher.  Seems folks were always coming into the house to meet with her and Daddy privately.  The insurance man, the accountant, etc.  My room was always the one used for them to entertain people in because it was private and stylish.  I used my allowance to buy knick-knacks, lamps, table, you name it.  It was fun.

Secondly, and probably the biggest current impetus for my redoing things, I am housebound all but three to five days a month.  That sounds like getting out a lot to some folks for some reason.  But that comes down to an average of two Thursdays (my sister’s day off) a month for about 4 or 5 hours.  A less than one hour trip to WalMart on a Saturday where my sister didn’t have Thursday off so I couldn’t do errands.  And every three weeks I drive myself to the grocery store. 

I can’t drive any great distance.  Technically, I’m not supposed to be driving at all.  My rheumatologist (we’re gonna call him Dr F from now on) doesn’t want me driving at all, nor does my primary caregiver.  Dr H (pain mgt) thinks it’s okay on occasion and for short distances.  The grocery store is 10 blocks from our house.  That’s my only truly indepenent time.

So if you add it up there are 720 hours in a month.  I am out of here about 16-20 hours a month.  Let’s subtract 320 hours a month to sleep (yeah, I wish!) that leaves 400 hours a month waking time.  So that puts me at 5% of the time that I get out.  Five percent.  That’s less than a parttime worker gets out in a week.  That leaves me staring at these four walls just under 13 hours a day on average.

Okay, math over.  You get the idea.  I like my environment to be appealing.  I love to decorate.  I’m good at it, in my opinion.  I like nice things.  We can finally afford nice things.  I’ve been out of my parents’ home for 25 years now so it’s about damn time.  I’m not talking Baccarat crystal, $7,000 sofas, gold plated taps, expensive Oriental rugs.  I’m talking WalMart and JC Penney for the most part.  Also, quite a bit from a mail order outfit that I really like called Brylane Home.  Upper middle class.

When we were searching for a home to buy (to move out of the trailer park, I might add) I settled on this one.  Let’s face it girls, we’re always the one that chooses the home and we and our husbands know it.  Our home is very reasonably priced.  We only paid $54,000 for it.  We should’ve really been looking at $100k homes for DHs income but that’s too much money.  I felt it would leave us house poor.  Plus, the house is huge!  1600 sq ft with an additional 850 sq ft upstairs that can be fitted out.  It was ugly as sin when we bought it but now it’s been remodeled. 

In my opinion, we have the best house on the block.  I don’t do things outside because, to be honest, it’s a lower middle class neighborhood with some shady elements.  We had a hand truck stolen out of our backyard and once someone put a bullet through one of our dining room windows.  No one was hurt.  So not an “elite” neighborhood by any stretch of the imagination but not the slums either.  It’s usually very quite and the neighbors are all good people.  We’re happy here.

Anyway, I’m running of anger here now.  Writing is very theraputic indeed.  It comes down to I want that magazine page.  I still find it comfortable.  We put our feet up on the furniture and everything.  I like it.  It’s no one’s business but my own.  I still intend to publish photos of the finished house.  Long as we don’t get robbed before that.  The neighbors must think we’re truly loaded because the UPS man has delivered something almost every day for the past two months lol.  Thank goodness for the internet or I wouldn’t get any shopping done.  

It’ll be beautiful and the nasty woman that posted the nasty comment will be green with envy

Monday: April 21, 2008

Pain level is higher today.  It’s been inching up for several days now.  I’m at about a 7 today.  Wish those days of 4s would come back.  Yesterday was worse.  It was an 8.5.  I could barely move most of the day and I was incredibly fatigued.

I’m pushing on though.  That’s all I ever can do.  Pain mangement doc (let’s call him Dr H from now on, it’s easier) wants me moving as much as possible.  His idea of as much as possible and mine are two quite different things.  He doesn’t even want me napping.  He says if I must nap, then keep it to 1.5 hours or less so that’s what I do…most days.  Actually, I’m down to napping only about half the week.

Today will be a nap day.  Very soon in fact.  As soon as the dryer is finished.

Wednesday: April 16, 2008

Today I actually feel pretty good.  I think I was giving the Lyrica a bad rep the last couple of days.  I forgot to take the third pill for three days in a row.  If I don’t take it correctly it won’t work right.  I know that but doesn’t make me less grumpy about it. 

I didn’t sleep long last night.  Only four and a half hours.  I had trouble getting to sleep.  Too many things going through my mind right now.  I’m on a creative high which always causes problems.  I have a very creative mind, if I do say so myself, it’s about the only talent I was given.  The problem of a creative mind is the “noise”.  My sister swears I’m bi-polar like her son.  I don’t think so.  He has noises in his head too but I think it’s a distinctly different kind of noise.  My mind fires on all pistons despite being on a steady diet of anti-drepressants, pain meds and anti-convulsants.  Random ideas pop in almost constantly.  I have notebooks full of notes and sketches to try to keep up but sometimes it overloads like last night.  Then I don’t sleep well.

When I did finally get to sleep I slept very well.  I took a nap yesterday which might have caused the insomnia.  It does sometimes but I think it was the “noise”.  Hopefully I can skip the nap today and keep myself occupied and awake.  Thankfully, the pain level is really low today.  I’d give it about a 4.  Long time since I had a 4.

Stay tuned…

Monday: April 14, 2008

Another week has started.  As always, the house was what I consider a disaster after the weekend.  Drives DH nuts if I clean when he’s here.  He always thinks it’s already clean.  Men.  So the house falls apart on Saturday and Sunday.  It’s clean now.  Wasn’t as bad as most Mondays.  But it’s at a standstill because my back and my right hip that I popped, hyperextended or whatever on Thursday are giving me a lot of trouble.  It’s bad enough that I stopped.  But the house is “acceptable” now at least.

I think I’m back to not getting “stage 4″ sleep again.  My pain management doctor said that was probably my problem.  The Lyrica seemed to help a lot at first but now, I don’t know.  It is still much better than it was, though so I’ll press on with it for a while.  I’m just so tired and sore the last 4 or 5 days.

Guess I’ll find other ways to amuse myself today.

Stay tuned….

Sunday: April 13, 2008

Haven’t blogged in days.  Must keep on top of it since I’m using this as my Pain Diary as well. 

Anyway, the last few days I’ve seen a set back, unfortunately.  Instead of completely wired I’m sleepy again.  My back is bugging me again.  I’m doing the stupid exercises as I have for 20+ years now to no avail.  I just wish my stupid body would pick a condition and stick with it.  This back and forth is killing me.

I didn’t wake up until almost noon yesterday after going to bed at my usual 2 a.m.  During the week I rise at 9 a.m. if I can sleep that long without the pain.  But yesteray it was noon.  Then I was tired enough that I couldn’t stay awake by 3:30 so I went for what I wanted to be about an 1 1/2 hour nap.  I woke up at 8 p.m.!  That’s almost a whole night’s sleep!  Then I was back asleep by 4 a.m. and up at 10:30.  Totally unacceptable.  This has to be sorted out.  I cannot function like this.

On the upside though, yesterday was my Methotrexate injection day.  Actually I was supposed to do it Friday and flat out forgot to do it so I was a day late.  What’s the upside you ask?  Well for the third week in a row it hasn’t made me ill.  This Leucovor the rheumy put me on seems to be doing the trick or I’m just becoming used to it now.  Don’t care either way as long as my stomach isn’t churning.

I think what actually probably needs to happen is my Methrotrexate does needs to be increased.  My sed rate is still way too high.  Down from the 81 it was a few months ago which is great.  I’m hovering around 37 now.  Doc says it wants it at 10 or less though so I have a long way to go.  I’m at .6 cc weekly right now which is a rather low dosage from what I understand.  He said we could go up to as high as about 3 cc.  That means three freaking shots in one day!  That’ll be fun….NOT. 

They’ve also taken on an infusion nurse where they give a “cocktail” of meds in a 2-3 hour infusion weekly.  That doesn’t sound much fun either but he said if something doesn’t give soon then we might try it.  I hear they’re having amazing results on their difficult cases so maybe, just maybe, it’ll offer some relief. I could always sleep during the infusion lol.

Stay tuned….

Wednesday: April 9, 2008

I’m going on only four hours sleep today.  I made the mistake of taking a nap yesterday afternoon.  I felt much better after the nap but I didn’t get to sleep until 5.  I have a lot to do today so I need to resist the urge to go back to bed.

I’m hoping all this hyperactivity is a side effect of the Lyrica and will wear off soon.  A friend said she thinks I just have Spring Fever.  Hope not.  That usually lasts for months. 

Either way I need to get on track.  I have wasted tons of time this week cleaning while I have the energy.  I hope the energy level stays up, maybe not quite this high though. 

My back pain is better of late.  The back exercises that the rheumatologist gave me last week had some new ones. I’m betting those are the ones that are getting results since they stretch different muscles.  My hands and shoulders are really bugging me this week and, of course, all the stuff I need to do require the use of my arms.

I’m try to remain positive during this adjustment.  It’s really easy with the euphoria side effect lol. 

Stay tuned……..