Tuesday, January 22, 2013

Baby it's COLD Outside!

Whew!  I woke up this morning and the temp is a whole 11 degrees.  With the windchill, it's at a minus 4 degrees outside!  Harley and Auggie were NOT fans of going out this morning and they made it a quick trip.  Now, I am not complaining-per se, because I know that it is much colder elsewhere.  I have friends in Northern Maine who have temps below freezing with 20-25mph winds today making it -45-50!  My hubby is up in MA this week and he has had snow since last night with more to come. That said, one reason we moved south of the Mason-Dixon to get away from this bitter cold.

As many of you know, when you live with joint and muscle issues the cold can be truly brutal.  For me, probably because I had not loosened up yet, the mere act of putting the dogs out (they are on "runner leads") and bringing them back in (removing their leads outside) a few minutes later caused instant shooting pain in my hands. Even though it took less than a minute each time my knuckles felt like they had vices on them and someone was turning those vices very quickly.  Additionally, going outside from my nice warm house caused immediate static throughout my hair.  It was literally clinging to my face as soon as I walked back inside.  I don't mean just fly aways- I mean full on clinging to my face.

Today is definitely the kind of day that you just want to snuggle up under a mountain of blankets and stay that way but, alas, work beckons.  So what's a girl to do?  First the hair.  It's been almost 2 hours since I got up so my hands have eased down to a throb.  I won't be able to manipulate a curling iron, the hands are not remotely ready to do a braid and if I try to just throw it in my usual messy bun, the static will cause crazy "pulling out and sticking up" hair.  That leaves (aerosol) hairspray and hot rollers.  Here's what's great about hot rollers:   I use a lot of hairspray on my comb or brush as I smooth the hair to it into the rollers and that will tame the static while the radiant heat from handling the rollers keep my fingers moving enough to get the job done.  I just timed it and it took 23 minutes to do 18 rollers, eyeliner (twice- I botched it the first time) and mascara.  I will leave the rollers in my hair until just before I need to get dressed.

Next, I have to layer up or my joints will protest all day.  For me that means warm socks ( they are in the dryer right now getting toasty), thicker pants (wool, denim, etc), a turtleneck, a sweater, a scarf around the neck, jacket, and gloves.  No hat today- that would bring back the static instantly.

I have also stocked up on "Hot Hands" for the winter.  Though I love Thermacare, it can get expensive.   Hot Hands work the same way and are relatively inexpensive.  Most likely because the are much smaller, don't have adhesive and don't last as long as Thermacare, but they get the job done well.  Whenever I venture into Walmart- I pick up a 4 pack for less than a dollar.  I open up a pack before I go out to start my car to get ready for work and slide them inside my gloves so that my hands don't seize up when I go to drive.  Many people put them on the palm side but I find that if I put them on top of my hands as far up as they will go inside my gloves and a second one where the wrist piece is, they keep my hands and wrists flexible enough to wrap around and manipulate the steering wheel.  When I get to work, I keep my gloves on until I am truly warm and then keep the Hot Hands on my desk when I am in there or in my pockets while I am on the sales floor so I can pick them up as needed to loosen my joints throughout the day.

Next, I have prepared my house for when I get home tonight.  My heating pad is plugged in and ready to turn on.  I will turn it on before I take the dogs out for their walk so that it's warm when I get back in.  I have a toasty blanket in my chair to snuggle under, I have an extra blanket on my bed and depending on my mood- Lipton Extra Noodle soup sitting next to the stove and a bunch of veggies that I prepped last night so that if I am not in the mood for soup I can do a quick stir-fry.  I also will, when I get dressed, leave my pajamas and spa socks in the laundry room so I can toss them in the dryer and warm them up before I put them on for the night.

Finally- two little "tricks" to combat the static and dry skin that the cold brings.  I know that I need to drink more water.  That's a big issue for me because I usually get my "water" for the day through coffee and iced tea.  Yesterday I bought an 8 pack of 12oz bottled water.  I left it in my car so that it's nice and cold and will take two bottles in to work with me.  I will refill them throughout the day and try to get in at least 8 of those bottles in before bed.  The second trick is to warm lotion and use it before I put on my pajamas.  What I do is to boil water in my tea kettle and pour it into a bowl.  I take the lotion and put it in one of the Ziplock or Glad small storage bowls with  the lid on and drop it into the bowl of water for about 15 minutes.  The lotion will be nice and warm and I find that it soaks in more effectively when it's been warmed.

What do you do to combat the cold?  Any tips or tricks that you use that you would like to share?

Friday, January 18, 2013

It's a Gratitude Friday!

I captured a meme last night that was the swift kick in the butt that I needed.  I was feeling very whiny because my back was (and is still) hurting and I could feel myself withdrawing and starting to be a major B-word because I know that I am to conduct a meeting this morning and then drive to my folks.  That means packing the car, then the dogs, then taking them in to the meeting, then back to the car, then a 2 hour drive.  Now we know that I love going to Mom and Dad's for the weekend, I just wasn't looking forward to the logistics involved.  Anyway- I want to share with you the meme:

When I saw it, a light bulb went off in my brain. It was an "Oh yeah!" moment.  I decided in that moment to stop thinking about the pain and take just one minute to see how many things I could be grateful for right then.  As the seconds clicked by, I realized that my blessings are bountiful and though the flare in my back is a pain- both literally and figuratively- I have been much, much worse.

So that's my challenge to you.  Take 60 seconds.  I set my the timer on my iPhone but you can track it any way that works for you.  Now- hit start and think of everything that you can be thankful for in your life right now.  How many can you come up with?   

Wednesday, January 16, 2013

Changing Meds- again

     One of the toughest things for me, besides waiting for test results and/or diagnosis, has been the journey to find the right medications to slow the damage that Rheumatoid Arthritis will cause and to ease my pain from both the RA and Fibromyalgia so that I can continue to work.  I have been through the DMARDS: Plaquenil, Arava, Sulfasalazine, and Methotrexate. I have done over 2 years on Prednisone.  Run through the Biologics: Enbrel, Humira and now Orencia.  I have done for pain: Meloxicam before Naproxyn and as well as the Naproxyn: Tramadol, Neurontin and Flexeril.  My shelf below my computer screen looks like a mini medicine cabinet.

      Since before Thanksgiving I have been having severe lower back/hip pain.  I thought I could tough it out but finally, in the midst of my 12+ hour work days, I gave in and went to see my Rheumy.  If this were a "normal" time of year for me- I would have been okay to wait but the pain (and exhaustion brought on by the pain) was affecting my work.  Normally during Back-To-School, I am doing 16 hour days to get everything done that needs to be done and I was just not able to do that this term and we were falling behind as a result.

     As I mentioned in a previous entry, my Rheumy diagnosed my pain as Osteoarthritis in the spine combined with RA in my hip causing muscle spasms.  She upped my Neurontin to try to give me relief.  Well- it's been over a week and the Neurontin has eased the pain a bit.  It's no longer acute as long as I take the meds but still "there" and reminds me of that every time I sit too long, stand too long or lay down too long.  It also makes me a bit fuzzy headed and makes me do the thing that makes me craziest- lose my words when I am trying to talk.  That's what I hate about messing with my medications.  The "new" side effects on my body and brain.  I know that eventually my body will ease into this new routine but until then it is just annoying.

     One of the most difficult ongoing things about living with these specific illnesses is that there is no true standard treatment.  Each of us is different so as we move through our post-diagnosis life we have to continually try and find new drug combinations or natural combinations or combinations of both that work for us all the while knowing that even though we find relief today, there may come a time that it won't work any longer and we will have to start from the beginning and do this all over again.


Tuesday, January 15, 2013

Things I wish....

I wish winter was over already.  I, like many RA folks, am not a fan of winter.  Winter is not friendly to our joints.

I wish that Washington would stop the giant "my penis is bigger than yours" contest and get to running the country FOR the people that elected them not for the party with which they are affiliated.  I am so over it.

That said- I wish we, the people, would show our elected leaders the respect that they were shown when I was growing up.  Yet another by-product of the media and the internet is that people feel the...ability to talk about our President et al horrifically and see no problem with it.  I wasn't raised that way.  I didn't particularly LIKE Bush Jr but I never attacked him verbally online or in face to face conversations.  It's not just (but mostly is) us- it's the media (I am looking at YOU Fox News and CNN) blasting people daily.  It's rude, and it shows the entire world just how completely disrespectful that "we"-as a nation have become.

I wish that people were as concerned about the impact that they personally have on our world than whether or not they could have semi-automatic and automatic weapons.  First- I have NO issue if you want to own a gun.  For protection or for sport- that's your right.  If I had the manual dexterity left, I would own one myself.  HOWEVER- there is no need for ANYONE who is not protecting the public (ie our military or police) to own a weapon that blows off dozens of rounds per minute.  I have asked some of the folks that I know who are loudest in their support why they need one and their answer is "because I want one".  Ummmm, hello- that is not a NEED.  Some have said "for hunting."  Ummm- what the heck are you hunting?  Bows and rifles have proven sufficient for years- and if you are shooting that many rounds at an animal either A- you REALLY suck as a shot or B- you are not hunting to use the animal for food or pelts- you are shooting for the fun of killing and that is scary.  How about they turn that "passion" for their "right" to have those guns into action to feed the children of the US?  Or for raising funds or awareness for their favorite causes?  Or even into doing something to making someone's day better?  The world would be a better place.

That's the end of my wishes for the day as I feel myself leaning toward rants-lol.  What do YOU wish?  

Tuesday, January 8, 2013

Support Systems-one of the keys to healing.

“We don't heal in isolation, but in community.” 

I was watching a talk show that I had DVR'd this morning and they were updating a story that they were following of a young woman (about 10 yrs younger than me) who has been battling cervical cancer.  In discussing this incredibly difficult journey she talked about how her support system and how very important they are in her journey.  I wanted to give her a High-5 because I completely agree that our support system is crucial to our acceptance of living with a devastating illness.

I cannot express how important that my support system is to me.  From my husband who helps me out in a myriad of ways on a daily basis, to my friends who are always- morning, noon and night- just a phone call away, to my parents and siblings who are just wonderful; I know how blessed I am to have such a terrific group of folks to lift me up when I am down and make living with an incurable illness...easier.

I have seen so many times when a person is fighting a horrible illness and their relationships melt away.  Whether it's because the other person could not "handle" going through the hard parts with you or they just feel inadequate and just don't know what to say or do to help so they withdraw completely, losing an important relationship during a tough time just compounds the devastation.  When you don't have someone to lean on, someone to count on, it can magnify the battle and make it that much more difficult.

I know first hand how it feels to have this happen.  I have seen some relationships that were important to me melt away since my diagnosis and my move and it hurts.  What was most helpful to me was to forgive them.  I had to look into my heart and say "This hurts but I get it."  It doesn't make it "right" but it does lessen the toll it takes on my stress level and my mental and emotional state.  Letting them go and wishing nothing but peace and happiness for them while I get on with my life was like releasing a burden that I was carrying on my shoulders.  I can't control my illness.  I can't control how someone else is feeling.  What I can control is how I deal with it.  I didn't tell them that I forgave them.  I didn't do it for them, I did it for me.  It was my peace of mind that was most affected, it was my hurt so it was for me that I let it all go.  Because I was able to forgive, if they come back in my life I will welcome them.  Perhaps I will not trust so easily, but I will be open to allowing them to be part of my circle again.

I cannot speak for everyone, but for me, the support I need is pretty simple:

1-  You don't have to physically be there, but let me know that you are "there" if I need to talk.
2-  You can just send me a text that says "Hey- I am thinking of you."  Often that is enough to turn a bad day       into a not so bad day.
3-  You can understand that I am no longer the "burning the candle at both ends and the middle" person I was when you knew me.  If I say that I can't do something-it's because I am wiped out, not because I can't be bothered.
4-  If you are with me on a regular basis- keep in mind that what I can do today, I may not be able to do so easily tomorrow.
5-  Respect my limitations but don't treat me like I am an invalid.  I know when I need help and most of the time I will ask if I need it.
6-  Most of all, understand that despite the changes that I have had to make physically- I am still me.  I haven't changed emotionally, I haven't changed the core of who I am.  Treat me like ME.

That all I've got so I will leave you with this:

“Encourage, lift and strengthen one another. For the positive energy spread to one will be felt by us all.” 

Friday, January 4, 2013

Another setback

Since before Thanksgiving, I have been experiencing a big "flare" in my right hip and lower back.  Now- the lower back pain has been going on for literally years and generally I can live with it but this has been high enough on the pain scale that if I so much as turn over while sleeping, the pain is so intense that it wakes me up.  By my calculations this has been escalating and beginning to recede and then ramping back up for 8-9 weeks now.  

So. I went to my doctor this morning and the hits just keep coming. She felt around on my back, felt the "grinding" I was describing in my lower back/hip area and moved my joints around. She said that I have osteoarthritis in my lower back and possibly a rheumatoid nodule in my hip.  Between the RA in my hip and the OA in my back- it's causing muscle spasms- which is why there is so much pain.  Oh- and she gave me orders for another Chest X-ray because she didn't like the looks of the one we did in June.  

She doubled my neurontin to 600mg 2x a day and told me that the only other treatment (because- of course- there is no cure) is exercise and weight loss. If I didn't know she was exactly right, and I didn't know that she's a good doctor who only has my best interest at heart, and if I didn't know that I am uber-bitchy because of the pain, I would have snapped at her and said something to the effect of "no shit- but how am I supposed to exercise and lose weight when I am in constant pain?" Big sigh

Essentially that means I can either get my butt up and out of the house at 5am to get to the therapy pool at the Y so I can walk and exercise in there (because regular walking HURTS) OR I can pay for PT- and exercise in their therapy pool. I am taking the first option starting tomorrow (Saturday-because I can find my bathing suit and go at 6 instead of 5) morning.  

When I left the office to drive back across the bridge to Indiana, I just want to curl up, cry and then sleep.  I wanted to desperately.  Unfortunately work calls so that is just not an option.  It's such a busy time of year for us in the store that a pity party is just not viable right now.  I am working 7 days a week for a few weeks and then I can relax a very little for the next following 2 weeks before my inventory.  By then, hopefully, I will be beyond the pity-party stage and can just relax.  

I was talking to a dear friend about this and she said "This year stinks already!"  I told her that I won't allow it.  Thirteen is my lucky number- I WILL make it work for me.   I just have to get past this, get working on the weight loss and reach for the stars. I don't know how yet, but I will not let this hiccup stop this from being a great year!

On a side note- Happy Birthday to the love of my life!  It's his 47th birthday today and I love him as much now as I did when he was 17.   

Tuesday, January 1, 2013

Celebrating a New Year with a 500th Post!

I signed into my dashboard this morning and realized that WOW- this is my 500th post!  It took me back for a minute because it felt a little momentous.  I decided to look back on some of my old posts and found some small surprises and some bigger things to reflect upon that have re-shaped my goals and "resolutions" for the coming year.

One of the biggest surprises that I found was that I have managed to meet as many goals as have gone unmet.  You may wonder why that is a surprise.  It's because we- okay I- tend to make our failings so much bigger in our lives than they need to be. Think about New Year's Resolutions for a moment.  How many times have you heard (or said) "I don't make resolutions, I never keep them anyway" ?  How many times have you fallen off your diet, been unable to quit smoking, stopped going to the gym and turned it into "I will never be able to lose the weight/quit smoking/get in shape/whatever!"  I am guilty of ALL of these- and then I beat myself up for a month or twelve and go on with my "bad" habits for another long stretch of time.  If the collective "we" can beat ourselves up over our failings for a good long time- why is it that when "we" meet a goal we don't celebrate for an equally long time?  Now- I don't mean that in order to celebrate our wins we have to shout it from the rooftops. We need to celebrate internally.  So here's my first "goal" for 2013.  My goal is to stop beating myself up and celebrate my successes big and small.  It means that when I look in the mirror, instead of thinking (EVERY. SINGLE. TIME)  "God, you REALLY need to lose weight!" I will change that to: " You ate really well today/drank all of your water/didn't lose it when you could have/etc.  WAY TO GO!"  Perhaps by re-framing the way I look at myself and my day I can, not only find even more to be grateful for, but also end my dread of the mirror.

Another thing that I found in looking back at the older posts was how the things I felt were "big" things at the time did not have as long lasting impact as the "little" things.  A good example of that is my Josh's visits.  I cannot tell you how excited I get when he is coming to visit! I miss my son so very much and when he is coming to spend time with us it just fills me with anticipation.  And then he arrives.  We have a wonderful time- and I cherish every minute of it- but in the back of my mind is always a countdown until he leaves again.  It tinges this terrific event with a little disappointment and regret.  It's always over too soon and as soon as he's gone home again, it's a huge let down.  On the other hand, we talk on the phone almost every day and while I do not by any stretch of the imagination take that for granted, it's not until I really think about it that I realize how very special that is.  In the big picture, it is so much more important that we talk regularly and that we make the point to connect and keep one another up on what is going on in our lives than that we have the...obligatory(?)...in person visit.  I came to this realization when I was thinking about my beloved Granny.  Some of my favorite vacations were to spend a week with her but there were a LOT of years that I was unable to go visit and I wished that I could have.  In retrospect though, we made it a point to talk almost every single week.  One of us called the other- barring travel- every Saturday morning and visited for at least a few minutes for many years.  While the week-long visits were lovely, it's those phone calls that were so much more important.  My second goal for 2013 is to maintain important connections. It's as easy as making a list of those that you want to reach out to and putting it on your calendar.  It doesn't cost anything to pick up the phone.  A card only takes a few minutes to mail- and how much fun is it to receive mail that isn't bills? It literally takes seconds to send a message via Facebook or Twitter and only a few minutes to drop an email.  The "payoff" is that I will have made time to reach out to and let the people in my life know that they are important to me.

Yet another realization in the look back is that it's okay- no- it's mandatory- to start over again and again until we get things right.  Looking back on those resolutions to lose weight, to quit smoking, to get in shape and how quickly they go out the window I think to something that I learned in Weight Watchers years ago.  We were talking about how we "blow it" by overindulging and then give up and she pointed out that just because we have a high fat-high calorie meal, just because we smoke one cigarette, just because we skip a session at the gym- it doesn't mean that we can or should give up!  A momentary failing is only that, one moment in time.  It doesn't have to derail all of our efforts.  It kind of goes back to the whole beating-ourselves-up thing in that we feel like we have failed- from one little mistake- and give up.  Not just on our goals- but on ourselves in the process.  My third goal for 2013 is to begin again as soon as I make a mis-step.  No more kicking myself and using a mistake as an excuse to quit.  Instead- if I have a "bad" meal- it will be a bad MEAL- not a bad DAY.  If I have - say, donuts for breakfast- I will start over again with eating on plan at lunch rather than telling myself "Well- today's blown, guess I will start again tomorrow".        Waiting for tomorrow is what got me to where I am.  It's time to live in today.

That's it for today.  I have more goals that I will be working toward this year- but it's time to do something for myself and take a nap!  I wish each of you a wonderful, healthy and happy 2013.  We have the power to make it great!