Getting Past Feeling A Hundred and Four

One thing I have learned about living with chronic illness is that there are a myriad of reasons and ways that we can feel significantly older than our physical age. Oh, I can generally ease along in a 10 or so year range from my own, sticking with the 40's and 50's for a good long while but with the onset of a bout of insomnia or flare, even a mini one, and then I start feeling older, and older, and older.

 More often than not it starts with the insomnia.  Then comes the extended stiffness that comes with pushing through the tired.  That brings on "new" (or- more) aches and pains which, speaking only for myself, causes me to walk more gingerly or use the affected area less, leading the areas taking the extra brunt to join the "symphony of Ow".  The more achy I become, the more I toss and turn.  The more I toss and turn, the less quality the sleep I am able to get becomes and the more I can feel the tired seeping through the muscles and joints and down deep into the bones.  Of course, the more achy and exhausted that I feel the older I feel.  By the peak, I am well past my 70's, 80's, 90's and into easing into my hundreds.

Just dealing with this cycle for the past, wow, coming up on 7 years now, has taught me that the best thing for me is usually to sleep...A LOT.  Last week I spent more time resting than I have in an age.  It helped quite a bit until last night when once again sleep was elusive.  While I was up in the middle of the night I read an email article from Arthritis Today that discusses a study that found....are you ready for this?  Are you sitting down?  More than 40% of people with Rheumatoid Arthritis DON'T EXERCISE!  Can you tell that this article annoyed the daylights out of me?  They concluded that:

"Unfortunately, there is the widespread myth that people with arthritis need to rest,” says Lee, who believes that some patients still think resting their joints is the best route. “Patients don’t have to meet the CDC guidelines, but they should be as physically active as possible.”

The study also found that inactivity was closely related to two factors: motivation to participate (in other words, whether a person believed he was able to participate in physical activity) and a belief in the benefits of physical activity. People who lacked strong motivation for physical activity, and people who lacked a strong belief in the benefits of exercise were 2.5 to 3 times more likely to be inactive than those who had strong motivation or held strong beliefs."

What floored me was that there is no mention in this "study" that perhaps the reason that we don't exercise is because, well, it flat out hurts!

While I am rather disgusted with this whole article, it does bring up a small point.  I know that when I do push through and keep active, it can slow down that feeling of rapid aging.  Oh- it doesn't stop it, but it does help to get through the days.  Now, I am not saying that I should be taking an aerobics class or out training for a 5k; but a little gentle yoga to stretch out the muscles or walking in the therapy pool at the Y (it's danged cold out!) or even a little dancing can keep me just limber enough to get through the day and give me enough energy to keep my mind engaged when it feels like it should be a fuzzy mess.   The challenge (at least for me) is to gather enough energy to actually get moving when all you feel like doing is hibernating.

Thankfully, physical exercise is not the only way that I can pull myself out of feeling older than my days.  I find that one of the biggest keys for me is to push the positivity.  In fact, when I am extremely worn down, it almost takes mainlining it like a drug.  As I lay there, a puppy on either side of me, I make sure that I have a book, or three,  that will make me happy.  It could be a sweet romance, it could be one of the Chicken Soup books, it could be anything- as long as it makes me smile. I surround myself with pictures of people that I love, and keep my phone close so that I can talk to them.  I keep a pad close by- either my iPad or just a pad of paper and a pencil- and as I think of things I am blessed with, when I think of things I am grateful for, I put the words down; because words have power.  I let myself sleep at will but when I am awake, I absolutely refuse to allow myself to wallow.  I let myself have a bit of a snit and then I tell myself that it's time to Just.  Get.  Over.  It.  I remind myself as many times as it takes to give myself a kick start that while I may not have much control over the physical aspects of living with a chronic illness, I sure as heck can control the effects on my emotions, on my mind.

Before I know it, even though I am still tired and still achy,  I begin to feel more like myself.  At least on the inside.

Sleep or Pain? That is the quandary

Oh the difference a week or two can make.  The insomnia that I have been battling had made me crazy so I thought it time to try and figure out which (if any) of the meds I am on was contributing to it.  I had a feeling that it was the Neurontin, so I started there.  The first two days with out taking it at night (still doing the morning- not totally stupid) there was no change.  By the third night, I started to sleep.  I mean really sleep.  First four hours without interruption, then six, then two actual eight hour nights.  BINGO!  We have a winner.

Unfortunately- it came with a price.  By this Monday night I went to sleep around 11pm and though I woke to my alarms at 4:30 and 5:15- at which time I gave an out loud "Oh thank you GOD that it's Tuesday and I can sleep longer because I close tonight"- I finally crawled out of bed at 8am.  Note the word CRAWLED.  I may have been sleeping, but the pain and stiffness are back with a vengeance. To the point that it took over four hours yesterday from the time that  I got up to get my hands to be able to fist.  My hands, my wrists, my elbows and my hips all had that lovely gnawing pain that we with Rheumatoid Arthritis know so well all day long.  My lower back?  Started out aching and by the time I got home from work last night it was screaming.  I heated up a frozen pizza because I was not feeling up to cooking and as soon as I took the puppies for their somewhat-abbreviated-walk; I went up to my room, flipped on the television because Glee (which makes me SO happy-natch) was coming on, put on my jammies and tried to get comfortable. After almost two hours of trying to find a position that would alleviate the pain enough to bring sleep, I gave in and took the Neurontin.  

It kicked in fairly quickly, again with much gratitude on my part, and I was able to start drifting off by about 10:30.  At 12:30 I was wide awake.  I had been having MAD crazy dreams and woke up with one of those "What the H-E-double hockey sticks" thoughts going through my head.  I looked at the clock and promptly laid back down to try to go back to sleep.  Eyes wide open, I gave up after 30 minutes and got out of bed.  We are now creeping toward 5:30am, I have had the better part of a pot of coffee, watched a bunch of stuff off of my DVR , stretched through yoga, and am just starting to get tired again.  Of course we are just past the time that my second alarm goes off for the day so there is no going back to bed for me and it's going to be a long, long, long day.  I am feeling thankful that it's almost time for my morning dose because the stiffness and pain are making their way back despite having stretched and I want to head it off at the pass as much as possible.

This is my quandary.  My next appointment with my Rheumatologist is on the 17th.  I don't know which would be worse- the continued insomnia or the ramping up pain.  I will most definitely have to decide before tonight because the decision will come down to whether or not I take the Neurontin again before bed.  I am open to any suggestions that you may have that would help me get comfy enough to get to sleep without taking the Neurontin.  

The Tough Questions

     I have done a whole lot of soul searching  in the last few years as I made my way along the path to positivity and gratitude.  As I picked my way through what is both in my brain and in my heart, I learned a lot about who I am, how I handle different situations, where my true values lay, and how to make the right decisions for ME.

There are two questions in my own personal development journey, however, that I have yet to be able to answer. They have me stumped!

1. If you knew that there was absolutely no chance of failure and you could do anything that you want, what  would you do? 
2.   If money was no object, what would you do with your life?  

     I know that the questions seem similar, but at the core they are very different.  When you have to earn a living you are willing to do a lot to make it a good living.  Many, many people do work that they are not particularly fond of if it means supporting themselves and their families.  When you don't have to worry about earning a living, the options grow exponentially and in some ways are very different.

     I don't know for certain what it is about these two questions but when I try to answer them, when I look in my head and in my heart, I stop dead.  Oh, I can think of things, but it's as if I have a commitment issue with this particular line of questions.  It is as if answering them is TOO final.  Like once I put it to paper, computer, whatever, I can't change my mind.  And goodness knows that I am good at changing my mind as to what I want to "be when I grow up."  I think it goes back to my Daddy's old saying- I just can't decide if I want to be a Ballerina or a Cowboy.  When I try to answer these, when I open myself up and try to reconcile what my head says and what my heart says, the options come so loud and so fast and get so mixed up that I can't sort them out and discard the "rubbish".  There's also the fear that I might say "Okay, this is what I would do in this situation and this is what I would do in that" and I would miss out on something that would truly bring me to my bliss.

     The irony here is that both of them are so purely hypothetical.  Failure is always an option.  Even though I am completely reconciled with the fact that we can learn so many important lessons from our failures- who wants to fail?  And as for question two- oh, I have so many ideas as to what I would do with my life if I were independently wealthy.  So many that I could not fit them all in if I had two lifetimes and 100% health.  When I start picking and choosing, I create the spiderweb of how any single life decision, big or small, can change everything  and that brings us back to the dilemma.  What would I do?  I just don't know for certain.  

Who is on your team?

I read a lot of posts about Rheumatoid Arthritis, Fibromyalgia and related illnesses.  There are some terrific bloggers out there (shout out to @ArthritisAshley @rawarrior @RAGuy @wren ) as well as groups on Facebook and articles from Arthritis Today that are really informative.  When reading articles and posts, I often read the comments as well because I know we all have a different perspective and I feel that we can learn from one another, even if it's what not to do.

 I have mentioned before that I don't often participate in the different online forums because I find them horribly depressing.  The folks who are not "happy" unless everyone knows how miserable they constantly are just bring me down.  Weeding through that can be tough but, those posters aside, I have seen two common recurring themes among those who are struggling, whether they are newly diagnosed or in the midst of their illness.  Those two themes are pain that is not managed and a lack of support.  

I am very sad for anyone who does not have a support system.  I often see stories about spouses, friends or families that just don't understand what "we" are going through.  More often the issue is that while at first everyone is understanding, after a time the people around them get tired of taking care of them, get tired of hearing about the pain, get tired of changing plans because of the exhaustion.  This is compounded by the "invisibility" of our illnesses.  It's not like we are wearing a cast or have visible bruises or scars.  We look fairly normal on the outside while inside our bodies there is a war being waged.   I can see how that would be frustrating for someone who is not feeling the constant pain, who doesn't know the exhaustion, who only sees that we cannot (maybe WILL not in their minds) get out of bed or go to work or pick up the house or care for the children or whatever it is that they expect.  It's a game changer when we are living with a chronic illness and not just as the patient.  I understand that.  That does not mean that there is any excuse for giving up on, for not believing in, a loved one.

I was reading several of this kind of post last night before I went to sleep.  I was sitting in my bed with Auggie resting his face on one knee and my iPad on the other.  Hubby was downstairs, watching his TV and Harley was with him.  This is a common position for all of us.  I was exhausted.  I am in the midst of another round of insomnia and had been up since 1:47am (I slept till 2 today- yay me!) and it was taking its toll.  Even though I had been up for far too long, even though my eyes kept drooping and my body said "just lay down", my mind would not shut down and let me rest.  When I am like that, I am VERY cranky. Everything irritates me.  Hubby knows this and gives me time to get to sleep before he comes to bed.  It's better all around that way.

As I read through the comments at the end of the article and was thinking about my current situation I realized again how fortunate that I am to be blessed with a terrific support system.  My hubby and son, my parents, my sisters, my friends, my colleagues and even my puppies give me a myriad of people to talk to, to lean on when I am having a rough spot.  It's a rare occasion when any of them makes me feel like they don't understand, sympathize or support what I am going through.  They, along with my Rheumatologist and my boss (who also lives with RA) give me a whole team of people who help me stay positive, who help me research new drugs and findings, who pick me up when I am down, who keep me fighting when I feel like just giving up and letting the illnesses take their toll.  The whole team just wants the very best for me in terms of treatment and in my health and when you have a team like this, it makes you want to fight all the harder so that all of their support is not for nothing.

So who is on your team?  Who in your life lifts you up and makes you a better person?  

Things I am obsessed with this week.

Okay, maybe not OBSESSED with but certainly fascinated by:

Swagbucks - This website allows you to earn "points" or "swagbucks" for doing things like searching using their search bar, responding to polls, answering surveys and viewing special offers.  You don't have to buy anything- but if you choose to shop through their store, you earn points.  The more you do, the more you earn.  Me- I am pretty passive but still manage to earn enough to redeem every other month or so. With the "bucks" you can redeem for items ranging from mp3 players to gift cards.  I have personally gotten half a dozen Barnes and Noble gift cards and most recently an iTunes gift card.  It's a neat site.  If you are interested- contact me and I will send you an invite because successful referrals earns you points as well.

Flipboard - Flipboard describes itself as a pocket-sized social magazine.  It is my very favorite app on both my iPad and my iPhone.  In addition to keeping me up to date on my Facebook Wall and Twitter Feed (you cannot post from flipboard but the feeds and there to view) I also read my News, keep up on Tech Innovations, Lifestyle blogs, The Happiness Project, my Google Reader and other feeds all in one spot.  You can search anything that interests you and it will give link you to blogs, Twitter feeds, Facebook pages, Flickr photos etc that apply to your search term.  They also have a "Best of Flipboard" that gives you suggestions.  I have found the most gorgeous photos  (check out Spooky New Mexico) that way.  Literally breathtaking.  I also have found neat blogs, which brings me to my next item:

The Burning House - There is a really cool blog called The Burning House.  The blog asks the question: "If your house was burning, what would you take with you? It's a conflict between what's practical, valuable and sentimental. What you would take reflects your interests, background and priorities. Think of it as an interview condensed into one question."  The caveat is that your family and your pets are safe- so what would you take?  They invite you to think of those things you would take, lay them out on the floor or a table, take a photo of it and upload it along with a little biographical info.  I love this site.  It's so fascinating to see what people would take with them.  The funny thing is that every time I think I know what I would take, I see something that is in someone else's collection and it reminds me of something that means a lot to me so I change my mind again and again.  It really makes you dig down deep and think about what your "things" mean to you.

And last but not least; Pinterest - Oh Pinterest how I love thee.  Pinterest is another form of social media.  Think of it as a giant bulletin board for all things that interest you.  I have created boards for Recipes to Try, Quotes, Crafts, Decorating Ideas, Things I Love and more.  You can just go nuts creating your boards.  After you create your initial boards, you browse through until you find things to "pin" to your boards.  As you find things that interest you and pin them you can check out the boards belonging to the  person who pinned it before you and if you like their things you can "follow" any or all of their boards so that as they pin more, you see it in your feed and find new ideas.  You can also, by signing in with your Facebook/Twitter/Flickr account see who in your social media circles are already on Pinterest so you can follow them too.  It's a lot of fun.  Personally- I have 18 boards created with 333 pins so far.  When I have time, I sign in, scroll through my feed and always find something to pin.  Heck- my recipes board alone has 90 pins and gives me inspiration for my weekly meal planning.  Pinterest is currently in beta phase so it's not open to everyone.  If you check it out and decide that it's something for you, give me a holler and I will send you an invite.

Thats it- that's what I am obsessed with this week!  These things make me happy and let me destress.  What are some of your favorite things?  

Crazy Weather, Insomnia and other Train Wrecks

It's 3am my time.  It's the 22nd of January. It's 58 degrees here in Kentuckiana and we have severe storms sitting right on top of us for two more hours.  I got about an hour of dozing type sleep and then the barometric pressure started going up, up, up and all the usual joints started throbbing.  It has NOT been a fun night.  On the positive side- last week's storm brought us tornadoes and a cold snap.  This storm is possibly bringing tornadoes as well- but it's going to be in the 40's and 50's all week.  Now THIS is my kind of winter.  I don't care about getting wet.  I usually just toss my hair up anyway and it's not like I am sweet enough to melt.  I just loathe the snow and the closer we get to spring without it- the happier I am. 

As a football fan in general and a New England Patriots fan in particular, I literally bit the polish off of my nails during "our" game.  I was all pumped up and mentally ready for overtime when the Raven's kicker missed the field goal and ended the game.  That, of course, means that "we" are going to the SUPERBOWL!  If any of the Pats are reading this- fly in to Louisville and I will cook you a home cooked dinner on your way to Indy!  As for the Giants/SF game- I was listening with half an ear and popping in for replays but I am sure that my sister (the Giants fan) and all of the other fans were on the edge of their seats as well.  

I don't know if you have ever seen the show Toddlers and Tiaras.  I saw my first whole episode the other night and I was more than a little horrified.  It was like a train wreck that I just couldn't stop watching!  I was so pulled in that I DVR'd several more episodes and have been watching it all day today.  I cannot believe the behavior of most of these kids.  More- I cannot believe the parents.  I get it- really I do.  I know that TLC edits many, many hours of footage to show us the worst for the entertainment value.  That said- if my child ever spoke to me the way these kids speak to their parents, if he ever threw the hissy fits these kids throw and get away with- I would swat his butt so fast he would not know what hit him.  On the flip side- these parents not only tolerate it, they create it.  I saw kids aged 2-7 years old sucking down Red Bull, Mountain Dew, Sugar Cubes and Pixy Stix like they were going out of style.  Not just sucking them down but parents feeding them to them in sippy cups and whatnot.  One parent even admitted to going through FIFTEEN BAGS of Pixy Stix at one pageant.  Nothing like hopping your kid up so they will perform and then standing by and watching as they melt down as they hit the sugar crash.  I just couldn't believe it.  I go back and forth between thinking that these kids are horrible and wanting to smack the parents who created the monster.  While I don't agree with a lot of their detractors who say that pageants in general are child abuse- I do think that the way some of the parents talk to their kids and drag them around borders on abusive at times. I believe that the amount these parents spend on this stuff (one parent admitted to spending close to $30,000 a year) is beyond ridiculous.  I also think these "glitz" pageants are a haven for pedophiles with the photos of these itty bitty girls looking either like china dolls or 16 year olds all over the internet.  It will be interesting to see if TLC follows these kids as they grow up because their parents are in for some big trouble.  Makes me very grateful to have had a boy.  Makes me even more grateful that we didn't expose him to a world where he was constantly and literally judged on his looks.  I am glad that, for any and all mistakes that we made, he was allowed to be a kid as much as he could.  

Well- that's all I've got for now!  Happy Monday everyone!   

An RA update and hoping I don't jinx myself

**Disclaimer** I do not advocate that you make any changes in your own routine without consulting your physician.  

I have a confession to make.  Due to timing issues, I have not had an Orencia infusion since October.  After that infusion, the next would have been over Thanksgiving weekend-  after that I was crazy busy at work and then came Christmas and then I was in Rush.  I have kept up on my Tramadol as well as the Flexeril and Neurontin that I take for my fibro but it's been almost 3 mos since the last infusion.  I believe that means the drug is well gone from my system.  When I realized that I would miss the first infusion, I was a little nervous.  When I realized that I would miss the second- I was a little scared.  By the third, I was in an "Oh Crap!" state of mind, especially since it coincided with the time of year when I am working 10-16 hours a day for several weeks.  And then I noticed something; 

The giant flare that I have been expecting?  It hasn't reared its ugly head yet.  Note I say YET.  The longer I go, the more I worry that it is going to sneak up on me and kick me right in the butt.  That said- I feel terrific.  I feel better- in terms of my RA- than I have in just over a year.  Yes- the RA is still there and I still have morning stiffness and evening achyness and though it's given me reminders when I overdo- generally I feel that it's just hiding there, waiting for its moment to pounce. I didn't even end up having to use my cane after all of those long days running around, lifting boxes and wearing myself out.  That's the first time in a couple of years!  If anything, this has given me more awareness in the difference in the way my body feels between the RA and the Fibromyalgia.  

As for the Fibro- whooo-boy is it still talking to me.  My muscles have hollered loud and clear to let me know that I am still in the grips of that particular illness.  My back still devils me from neck to pelvis on a daily basis, the chronic fatigue is still ever-present.  All of the muscles across the body feel like a bad toothache but I can live with it since the joints are not joining that symphony as much as usual.  I also feel that if I were able to make it to my yoga class (or had the discipline to do it at home) that I have missed due to my work schedule since Thanksgiving- even my fibro might settle down a bit.  I know for certain that when I make it to the Y to go to my yoga class and spend time in the therapy pool, the pain in my muscles eases to a dull throb.  

So my "plan" is simple.  I have my next appointment with my rheumatologist in February.  Assuming I have no RA flare (knock wood) between now and then, I will talk to her about NOT going back on the Orencia- not going back on anything- until such time as my body tells me that it's time.  Tuesday I am going back to my yoga class and am planning to go early so I can do some time in the hot tub end of the therapy pool as well.  I am also going to look at my schedule and see when else I can carve out time to go back the therapy pool and do some exercising in that pool.  I am also going to try again to....wait for it....quit smoking. I have a cache of the "electronic" cigarettes ready to go.  This will help me ease into it rather than going cold turkey because I tend to get REALLY ugly when I go cold turkey.  In the mornings, my no smoking plan is to get out there,  rain or shine, and take a walk while my coffee brews.  That I am going to start this weekend so I can make it a habit.  I have my iPhone ready- my music loaded on and earbuds waiting, sweats (with pockets) that are comfy to sleep in so I can just get up and go.  I have sneakers pulled out and ready to be put on.  The goal is that by 45 (which is FLYING toward me) I will be smoke free and still off the "big" meds.  

I just hope that by finally "talking" about it- I don't jinx myself!  

Happy Friday everyone!