No Meds or Meds?

Yesterday for some weird reason, I forgot to take my morning meds.  This had good and bad effects for my day.  I had a hard time breathing, moving, and coping.  All day, I struggled with pain and stuffed head.  Of course I wasn’t sure I’d forgotten – I might have been having a bad day – so I couldn’t take anything until I figured it out.  This meant the end of the day when I got home.  It was a miserable day.  EVERYTHING hurt including a massive sinus migraine.

The nice thing – hey my drugs do stuff for me.  There are times I HATE taking my meds.  I think – oh I’ll just stop taking them and cope on my own.  I know today that will make my life significantly more painful. 

By the time I got home, I could barely get up the two steps from my family room to my kitchen.  Once I was in the recliner, I didn’t not want to move.  So I live (with my meds) at a six for pain.  This was a twelve.  It took everything in me not to sit there and ball my eyes out.  Only person to blame was me.  I picked up my med container and sure enough – there they were.  Swallowing them, I tried to sit back and relax in the hopes the pain would ease.  It did eventually but it took most of the night. 

I’m still in pain today but it might be the weather causing the problem.  Yes I definitely took my meds this morning. 

Grumpiness Abounds

It’s been a week.  The weather changed and my pain level is up.  I try to remember this most days but sort of lost it at work.  My student worker got to listen to me complain and curse.  I apologized it shouldn’t have happened.  I did close my door, call my sister and complain to her.  I got over it mostly but there are just things which annoy  me.  I had one of those days.

All around, rough week.  Pain at levels which are nearly unbearable.  I hear my inner voice saying things I don’t really feel or believe but when I’m weighed down with pain it takes me to places I don’t want to go.  This is not a plea for pity or sympathy – a statement.  My hope – if I talk about this which I hate doing – someone out there will know they aren’t alone and will know someone else understands.

Movement equals agony.  Breathing is work.  For me the worst part is I can’t crochet.  I am struggling to write when I’ve got stories pounding in my head.  The things which lift and change my mood – which is supposed to help – are too painful to do.

This is what chronic pain is.  This is what I deal with.  It makes it hard to be positive and upbeat and pleasant.  My job requires pleasant.

I get through.  I’m not giving in to this bullshit.  The pain will ease.  The pain will fade.  I’ll sleep.  I’ll work on a story until the pain has shifted.  I’ll do what I can to get through it.  It’s all I can do.

Part of me wants to rail on the medical community but really what’s the point.  I’m to a point where I accept they’re not going to help me.  All I can do is find ways to cope.

So on to normal – whatever that is.  It’s pay week.  I’ve paid bills.  Ken and Vicki will run errands tomorrow.  I’m hoping for a quiet weekend.  I’m hoping I can spend time writing and publishing things I have done.  I’ll have to see how the weekend goes.

It seems like we always have a lot going on every weekend.  I have a stack of crocheting on my couch I’d like to finish.  I have several projects I’d want to experiment with.  I just need to get my arms, back, and neck to stop hurting.

Tomorrow I can sleep later.  I’m hoping to sleep until I naturally wake up.  This helps with the pain but again, it’s a pay week so busy weekend.  I’ll see how things go.  Ken and Vicki like to grocery shop at like six in the morning.  I see no reason to acknowledge six am exists.  They’re happy morning people.  I’m going to post this blog and go write.  If the writing is going, I hope it will keep me busy for a few hours.

I’m working on an independent story.  If that peters out, I’ve got Wayfarer 17 and a few other options for working on writing.  I also have editing to do.  Always there seems to be editing to do.

Vacation!

Friday Ken and I drove to Indiana to spend the day with Vicki on Saturday.  We returned late Saturday.  Friday was also my last day of work until August 8.  I printed off several manuscripts to edit while I’m on vacation.  I have the edits made on paper but need to put them on the computer.

It was a tough drive for me on Friday.  My pain level was high and I was tired.  We had detours, construction, and impatience.  The drive which should have taken five hours took six and a half.  On the way back, we came a different route and it took four and a half.

This morning I finished the manuscripts and I’ve been working on bills, budget, and a variety of other things.  Sitting at my desk, being organized, and getting stuff done is necessary but I’m antsy to get back to the recliner to enter the edits in my files and work on covers, descriptions etc.

The nice thing, I noticed yesterday my pain level was down.  I didn’t have swollen ankles, sore knees, or sore hands.  I might even be able to manage to crochet again.  I can make fists with both my hands.  Now whether this is from the drugs or the inactivity – no clue – but I’m feeling better.

Next on my list is to keep grumbling at the doctor’s office.  I have called every day, left a message, and not gotten a call back.  If they don’t do a letter for me, I will end up paying for a new scooter on my own.  This is disheartening because I really can’t afford the new scooter on my own.  I’ll figure it out if I have to but… I’d rather not have to.

Good news for the week – I went to defer my student loans in order to afford the scooter and discovered I’m paid up until February.  This means I don’t have to make a payment and I’m not going into deferment.  Both good things.  Also, Ken is going to visit the girls in October.  I went looking for a ticket for him and got it for under $200 total.  This is a great price!  It makes it much more affordable.

The rest of my week will involve a lot more writing tasks.  I am hoping to spend some quality time getting items out and promoting them.  Fingers crossed!

Updates

The insurance came back early and not with good news.  They aren’t going to pay for anything with my scooter.  I could fight it but don’t really feel I have the time.  I’m waiting for my doctor to get back from vacation to see if he will write a letter for the folding scooter in order to not have to do anything to my car.  He’s back tomorrow but I don’t know if he will call me as it’s his first day back.

Meanwhile, the rheumatologist prescribed drugs to help with the pain but it’s a steroid.  I’ll see how well this goes.  I don’t normally do well with steroids.  She did come back to say she thinks my arthritis is inflammatory.  Part of me is like – see I told you.  Part of me is relieved it isn’t something worse.

My pain levels been through the roof.  I’m still trying to manage and get to work.  I hate missing because I’m in pain but this last week I’ve spent a lot of time laying in the recliner in the dark.  It’s unproductive and a waste of time but when I can’t close my hands, put weight on my legs, move my shoulders without pain searing through me, there’s little else to do.

I have to keep reminding myself to do what I can, to keep looking forward.  There will be an end to this high level of pain and I’ll get back on track with writing and working.  Plus I’m making progress just not at the rate I would like.  I remind myself to give myself a break.

This weekend has been all about errands and a little fun.  Yesterday Ken and I ran errands – pharmacy, post office – and then we went to see Star Trek Beyond.  It was good.  I enjoyed it and there were some great lines – Dammit Spock from McCoy as well as others.

Cocoon

Snow and rain are supposed to be creeping into our area.  The weather system is wreaking havoc on my joints and arthritis making my day pain filled.  I’m curling up under warm blankets and going to see whether my fingers will work.

It’s like a weight – a large and heavy weight on my body – when the weather does this.  Every joint feels like it is being pushed on, compressed really tight and at the same time pulled apart, like the pressure in the joint is so much the joints are going to explode.

I’ve taken my drugs.  The only other thing I can do is keep warm and rest.  Sleep is the refuge which masks the pain.  When the levels get this bad, all I want to do is sleep.  Sometimes if I sleep for a little longer, I can get up and manage for the day but other times – like today – sleep is only an escape.

It is going to be a day to put on movies or tv show and curl up under warm, warm, blankets.  While everyone is watching the skies for rain or snow to assault and make driving difficult.  I’m going into a cocoon to try to keep warm and ease some of the pain.

I can only do what I can do

My desks at home and at work are piled high with work.  I have so much to do and my gout is flaring.  I keep trying to tell myself it’s okay for me to spend a day curled in a ball doing nothing more than listening to an audio book.  Unfortunately, I don’t believe me.

If I’m taking a day off – like I did yesterday, I want to accomplish a list of things whether it is crocheting or writing.  I want to see progress and feel good about it.  Yeah – I know.  Stress is bad for gout too.

I hate just being a vegetable because it hurts when I try to close my hands.  I hate it when I’m stuck home when I know people are relying on me to be at work, accomplishing all the things I need to accomplish.  If I’m going to spend a whole day at home alone, I want to have something to show for it, not just pain and frustration.

And then I take a deep breath and scold myself.  The frustration and stress I’m putting myself under are not helping so I have to have a more zen approach to life.  This is hard when I have a week filled with pain.  Yet I try to bring my mind back to the center.  I can only do what I can do.

Good news – I took the new drug tonight and don’t seem to have a reaction.  Next step – continue to take it and see if it helps to lower the uric acid levels and keep the flares from happening.  That is a long term – let’s wait and see thing.  I can only hope it does so I can lead a somewhat normal life (well as normal as I get anyways).

I sat tonight and cut out coupons.  I sat up to the table to do it because it’s easier that way.  My feet are swollen and sore.  I’ll take another dose of Tylenol (my candy apparently) and hope it will help.  Tomorrow I’ll work a longer day to make up some of the time I missed and get some of the work done I need to get done.

I have to balance that with how long it will take me to do bills when I come home.  I will have been sitting at my desk at work so I’ll have to make sure I can spend enough time paying bills once I get home.

I’ve already told Ken he will have to do the errands.  I’ll try to get a grocery / coupon list made up for him tomorrow night so he doesn’t have to do that part of it.  Saturday I want to try to get a book out if not do the prep for all three but I’m keeping that chant in my head.  I can only do what I can do.

On the plus side, I have had two more reviewers agree to read one of my books.  Ken took the books to the post office today.  I can only hope they will be so intrigued once they get them, they will read them right away and post the review.  Maybe if I’m lucky, they will come back and ask for more of my books to review.  I can only keep my fingers crossed.

This week I’m struggling with my mantra of I can only do what I can do.  I’m usually fairly zen about it but apparently my determination is outweighing my sense.  I’ll say it again and maybe I’ll actually believe it – I can only do what I can do… everything will get done eventually.

What a Week

Pain on Thursday kept me home.  The weather turned cooler which is probably why my pain level went up.  This meant I stayed at work later on Friday to make up some of the hours.

It’s been a good week for writing.  I finished the second Wayfarer manuscript and did edits on two other stories.  This weekend I have five manuscripts on my couch waiting for me to edit them.  I’m hoping to finish the edits on the second Defenders book.  I’m also hoping to publish the first Defenders book in the next few days.

Last night I was grumbling at Vicki because I felt like I was behind schedule on the editing.  I have the five manuscripts which totals nearly a thousand pages.  I wasn’t even done with one.  I had to stop yesterday because I had a headache.  I felt this put me behind.  Vicki reminded me that I was grumbling about a self-imposed deadline and I needed to be more realistic.

She was right.  I worked on one of the longer manuscripts yesterday.  I have about 75 pages left, I think.  I’ll finish it today.  This will be the last edit on the manuscript before I start developing the production pieces I need for it.

I’ll probably pick up the next longest manuscript which will be more intense as it is a first edit.  There aren’t even chapters in this one so it will be a lot of work to go through the first edit.  One thing I decided was that I should go through and search out key words I tend to overuse when I write the rough draft.

Unfortunately, I woke with a headache several times in the night and this morning I still have one.  Yesterday I spent a lot of time working on business end of writing – updating spreadsheets for income and expenses.  I also submitted some paperwork to start blogging for Pagan Square.  I’ll have to start thinking about what I want my next post on there to be.

Today Ken will watch football.  I will probably work.  I uncovered my crochet basket yesterday and saw a project that has just been sitting there waiting on me.  It isn’t screaming at me but it is tempting.  Perhaps if the editing is too hard on my head today, I’ll watch movies and crochet.

Pain is still a problem but it is daily so I’ll just cope because what else can I do.  A warm blanket and a good manuscript to edit should keep me from being in too much pain.

No Errands Equals Lots of Writing

Yesterday I spent a good portion of the day working on my story.  The other things on my list did not get done.  I’d be disappointed but I added 10,000 words to my story and got a general list of scenes that will lead to the end of the book (I think).

Pain level is still high so instead of working in my office today I’ll be in the recliner.  My classical music is on and I’m going to work on my story.  If it goes well I might just finish it today.  I noticed last night that I had discoloration on my left knee and a red spot on my right ankle.  This is a good indicator that my gout is being obnoxious.  I put a heating pad on my ankle and took a second dose of my arthritis medicine.  Today I’ll take it easy and see if that will help ease some of the pain and flaring of the gout.

Like reading a book, I got to a good stopping point last night and opted to try to sleep.  Mostly I was successful.  I actually got a large chunk of sleep.  This usually helps the pain level.

Ken watched football and I wrote.  That will probably be our day today as well.  It felt really good to write for a good eight or more hours yesterday.  My mom and one of my sisters stopped in and then I drove my van to pick something for them that wouldn’t fit in their car.  That took an hour out of my writing time.  I also chatted with one of my daughters.  Maybe there was a bit of balance in my life.

Goals to Live By

The last three weeks have been filled with little sleep, lots of pain, and a lot of writing.  I started a story because I couldn’t sleep.  I worked on the story as the vision came to me of what it should be and where it should go.  The first rough draft is done.  93,181 words.  

The full moon is tomorrow.  I’m hoping that I can bring some balance into my life.  The story is done but the work to bring it forth is not.  I’ve got a rough draft which will need refining and smoothing out.  There are a thousand steps before the story can be grown into a book.  
With the full moon I’m looking for some balance in my home, work, writing and crocheting aspects of my life.  Maybe with the story out of my head I can go back to getting all the other tasks done that are grumbling at me.  
The completion of the story is exciting and a bit sad.  I have to let go of the story and move on to the next project.  Editing has to wait.  I can’t write this week and edit the same story next week.  I don’t have enough objectivity.  It’s a bit sad for me because for three weeks now these characters and their story have been almost all consuming.  I’m almost saying goodbye to some good friends.  Though I think in this case I’ll be revisiting them because I think there is another story to follow.  
Next project – the next poetry book – Moments in Life.  These will be all the poems I’ve written about life – my life. I have the cover done.  I’m happy with how it looks and I think it fits part of how I look at life.  I will be working today on narrowing down the poems and getting them categorized.  After that it is all production time – getting the poems in the order I want, cleaning up the file so they can go out there.  
Once I’m done with the poetry book, I’m going back to editing the second Defenders book.  I’m about halfway through that one and it is progressing.  The problem with the editing process is I sometimes get lost in where I am in the story.  When this happens, I have to go back and really think about what the purpose is of what I’m changing.  
It is a pay week and we are doing easy errands this weekend.  We went to Sorgs first thing this morning and tomorrow Ken will do the shopping.  I’ve had high pain levels all week and am still not at a great place for pain levels.  All I can do is manage at this stage in the game.  Until whatever is irritating works itself out of my system, I just have to keep working to get through every single day.  Some days I manage very well and other days I just want to sit in the dark and hope that I can sleep in order to escape the pain.  There isn’t anything anyone can do.  It is arthritis.  It can’t be cured or fixed.  It just is.  So I just cope.
When I have higher pain levels, it helps me to have goals.  They may be small goals like – I will sort poems or I will eat.  But these goals help me cope.  This is why my to do list is so important.  It gives me easy access to the things I want to get done so I can pick a goal and work on it without having to think about it.  
Pain level today – 8 (kinda sucky) but the goal – sort poems and finalize the cover.  Cover done.  Other goal – go see two movies to escape from life for a few hours.  I’m finally going to get to see How to Train Your Dragon 2!!!!  We are also going to see Guardians of the Galaxy.  This will be my afternoon goal.  Fun and escapism – two things I don’t often indulge in.  Today they are an important goal.  
   

Medications and alternatives

Since my pain med was taken off the market by the FDA, I’ve had a difficult time finding pain meds that work and that doctors are willing to prescribe for me.  My ortho says – pain meds should be maintained by the GP.  My GP says – if you are on delauded then the doctor who prescribed it has to continue prescribing it. 

This is just dandy for me as I’m left with no pain meds but over the counter pain relievers.  Anyone who has regular pain knows that this is frustrating and difficult.  I have no control over the doctors.  I can’t make them prescribe drugs for me.  My only option is to find other ways to manage my pain. 

To this end, I’ve found heat works well for me.  When my knees, ankles, and other joints are screaming with pain, I put a heating pad on them.  I’d love to have a hot tub but that is outside my budget.  The heating pad puts heat right on the joint which eases most of the pain.  I know I’m unusual for this – most people prefer ice packs.  The only time an ice pack helps is when I have a migraine and I put a cold cloth or ice pack on the back of my neck.  Ice or cold (like the sub-zero weather we’ve been having) actually increases my pain.  I avoid it as much as possible.

When the pain is at a tolerable level, I make a point of moving the joint.  For my ankles, I will do flexes and points of my foot as well as circles to keep the joint as limber as possible.  For my knees, this is harder because my one knee almost never stops hurting but I try to do gentle motions that keep it moving.  Too much walking or standing make the knee hurt more.

Slippers help keep my feet warm.  I’m a barefoot girl.  I don’t like stuff on my feet but walking across cold floors and letting my feet get cold is a sure way for my pain level to spike.  Using slippers keeps the cold away from my feet and the pain at bay.

I’ve had so many people tell me “You need to get up and move more”.  In all honesty, I’ve tried this and all it does is aggravate my knees further.  Having my legs at a particular angle makes it so they don’t hurt.  When my pain level is high, this is all I really care about. 

On those mornings when I can’t close my hands, I use hot water to wash away the ache.  Then I also crochet on a nightly basis.  This helps to keep my fingers limber.  One of the hardest things I have to cope with is a cold steering wheel.  Thick gloves go on my hands before I touch anything outside.  Unfortunately my hands still get cold so I’m still looking for something to protect them better.  I may crochet a steering wheel cover but I have a concern about the cover slipping while I’m driving.   

Massaging lotion into my hands helps to limber them up and warm them up.  It also helps other joints like my wrists, elbows and so on.  Getting a professional massage definitely helps with my pain level but the budget isn’t all that happy when I spend money on massages.

With our extreme cold weather, I put a scarf between my knee and anything cold.  I use my long scarf to cover up the knee when I’m on my scooter in the cold.  It gives it another layer of protection. 

Ultimately, I’m going to have to figure out the pain med issue, but in the meanwhile, these little tricks help make life less painful.  I just have to find a doctor I trust – this is no easy feat.