It's Been One Heck of A Challenging Year Already!

      Wow, is it really only March?  The best example I can give as to how this year has gone so far actually happened this week.  Yesterday morning, I woke up at one, fell back to sleep around 2 and at 3:30 Auggie was losing it to go outside, so back up I got and decided to stay up with them.  As I was standing there, waiting for my coffee to brew and waiting to bring the dogs back inside all I could think was "It's okay, it's Friday, tomorrow I can rest."  As I shuffled into my office, coffee up gripped with two hands because they are flaring, almost tripping over dogs who were jockeying for position with treats in their mouths, it suddenly dawned on me that it was only Tuesday.  It seems that after this month, 3-3:30 am is my "new normal" time to get up because I just naturally wake up and can only go back to sleep if I force it.  I think it's because I know that I can be productive as soon as I can get my hands, feet and hips loosened up and I have so much on my plate that I need the extra time in my life.  

    School has been an UBER challenge this semester.  I mentioned a few posts ago that I am taking three courses this semester.  Even though it will afford me a Summer vacation without worrying about taking finals (our biennial family reunion is the week of the first Summer semester finals) it has not only worn me out but shaken my confidence.  There's a joke that "C's get degrees" but every time I work on my Physical Geography course, I use it as my mantra.  I just should not have done this course online.  In addition to having an effect on my confidence and my GPA, it's also affected the time I've had to work on my other courses and that's showing as well.  I was very proud of the work I've done thus far, and I'm watching the house of cards fall.  I can only hope to get out of this term without too much damage and never take three tough courses in one semester again. 

     Naturally, there have been health challenges this year because when are there not?  I have had several rather painful flares.  Thinking about it objectively, I am going to say it's been a solid week -2 every month.  But wait- there's more! For quite some time I have been having issues with my skin.  I keep getting painful blisters on my scalp, which then burst and scab and come back again. Because it was on the scalp-  I thought maybe it was a reaction to colouring my hair, so I stopped that- and it still didn't go away. Then I thought maybe it was a reaction to the Plaquenil, so we took me off that.  When it didn't go away, back on it I went.  I've tried psoriasis shampoos, clarifying treatments, you name it- then it started to show up on my back and on my face and I gave up.  So now we add a Dermatologist to my arsenal of doctors when they see me next month.   I feel like I am collecting specialists at this point and honestly- if this is another offshoot of the RA, you will probably hear me scream from wherever you are. 

    Finally, a few weeks ago, on the day we did my store inventory,  my poor dad took a nasty fall.   He and his neighbor/bestie were carrying a 55" tv up the very steep stairs from his basement man cave because Mom bought him a new one for Valentines Day/their Anniversary and Geek Squad was scheduled to come out and install the new one.   Mr. Dan was up top, Dad down bottom. They were 4 steps from the top when somehow Mr. Dan either missed a step or slipped and both went "ass over teakettle" down the stairs.  They ended up with Dad on the bottom of the pile on his back, Mr Dan laying on top of him and the TV like a cherry on that sundae.  Mr. Dan was bruised and battered and had a cut on his forehead from the TV hitting him.  Dad had a fractured L2 vertebrae and a torn Achilles tendon.  As soon as Mom let us know that Dad had been taken to the hospital, Jim and I threw some things in a bag, threw the dogs in the cars and headed out.  It was a Saturday when the accident happened and I was fortunate enough to be able to stay through Monday to find out what was going to happen.  Dad was in the Ortho/Neuro unit at Deaconness Hospital Midtown through Wednesday and then they moved him over to the Rehab unit on the same floor.  They have spent the last 10 days or so teaching him to move with a brace on his back, use a walker and try out a knee scooter.  The brace will be with him until the fracture heals.  As for his Achilles, he has yet another MRI this morning and tomorrow will find out if they will do surgery or progressive casting to treat that.  As of now, he still can't put any weight on it without excruciating pain.  I just want him to get well.  They sprang him from inpatient care yesterday but he and Mom went to my Aunt's Mom's sister) house for the timebeing because he still can't get up the few stairs into their house because he is currently in a wheelchair until they begin treatment.  I know they really, really appreciate my Aunt opening her home to them but I am sure will both be very happy to get him home and back to some kind of normal. 

Are you tired yet?  I am tired just recapping all of this and it's time to get ready for work!  Please keep my Dad in your thoughts/ prayers in hope that he gets some relief soon and have a lovely, lovely day!     

I am A Medical Failure? #Fail

     Ten years (in August) I have been diagnosed with RA.  I have been through all of the traditional drugs to treat my RA.  At my last appointment with my Rheumatologist I requested, we went over the pros and cons and we ultimately decided to, take me off of my Orencia.  It was just not doing anything for me.  I have been stable for so long that I can FEEL when there is a difference and there just wasn't one.  That's a lot of money to be throwing away for no result.

    I saw my doctor on Friday.  She looked at the still flaring hands and feet and said that it was time to start again.  She looked at my record.  She listed the LONG list of meds that I have gone through and that have failed.  She looked me directly in the eye and said "We have exactly 2 options left. Actemra and Xeljanz, everything else has either failed, and the one other drug we have left is Remicade and that has to be taken with Methotrexate so we have to rule that out."  We went on to discuss the two options- both are different pathways, both are home given rather than infusion.  One is a shot, one is a pill.  Dr. Chase said that given the choice, she would go with Actemra only because it's been around longer so there's been more time to find out any side effects.  I trust her, so that's the way we went.  But let's face it- either/or: one fails and we move to the next one and then that's it.  We will be out of options unless something great comes down the pike.

     For a moment, when she outlined where we are and what my options are, I just wanted to cry.  I felt hopeless, like a giant failure.  I know, I know.  It's nothing to do with me-it's my particular RA.  It just took me from the moment she said that until I got home to get to that point.  I responded beautifully to Methotrexate and would still be on it had it not begun attacking my liver.  That is what bothers me the most.  Most of the rest of the drugs were okay at first but then just stopped working.  Some, I never even felt a difference.

     As for the pain meds- I am already on SO much from my perspective.  Pain meds, anti-inflammatories, Postheraptic neuralgia meds and muscle relaxers- plus Lasix for the constant water retention/swelling.  From here we would have to go to narcotics and I am just not ready to do it.  I don't want them.  It's bad enough that I have to carry a case when I travel just for my meds, it's bad enough that I have to take a plethora of pills morning, noon and night.  It's bad enough that I have enough "fog" from the Fibro and RA that I lose my words.  I am not adding the haze of a narcotic on top of it.

     Today I call Actemra and set up their lovely co-pay card (thank goodness for these!) and then talk to my pharmacy about sending the first 3 months worth of shots.  We shall see what happens but hopefully, this one will be "The One".  I am figuratively crossing my fingers for it.  

It's the Little Things

     Those who are friends with me on Facebook have probably seen that I recently cut my hair off.  This was a huge deal for me.  I love(d) having long hair.  When the stylist cut it, the first swoop through was to the tune of 8-10 inches. The first clump that fell in my lap had me taking a quick intake of breath with thoughts of "Oh God, what have I done?"  After- I think it looks really cute.  It's easier to care for, that is certain and that was the goal.  You see, courtesy of the herniated disc in my neck, I keep having my shoulder and arm fall asleep.  It's not painful, it's just the pins and needles thing, but it is very irritating.  Especially when it happens every time I try to brush my hair or if I lean on my desk or lean against the car door.  It usually involves a few minutes of trying to shake it out because the strength drains as the numbness sets in.  So- I chopped off the hair since I could not properly care for it in a reasonable amount of time.  I then sank into a bit of a funk because I felt like I had sacrificed my slow-growing, long, straight hair to the Gods of Chronic Illness.

    Another issue that I have been dealing with is a LOT of Acid Reflux- especially at night.  I cannot tell you how many times lately that I have woken myself up coughing and choking on acid and the burning in my chest.  The doc has put me on Prilosec and it helps- but it's not an "every day for the rest of your life" drug so shortly after tapering off, it comes back with a vengence.  Sunday night it was so bad that I woke my poor husband up almost every time I woke up.  Now, himself normally sleeps like the dead and is cranky if woken in the middle of his sleep but he really came through.  I sat up in the bed, groped around for TUMS and in tears because the acidity was so bad in my throat and I didn't realize that I had woken him.  Without a word, he got up went downstairs and grabbed me a bottle of water.  Each time after- he woke up and made sure I had water available and stayed up with me until I could get back to sleep.

Neither of these things are earth shattering.  While I understand that, it came as a revelation that it's the little things that can make a huge difference.  Something as simple as a haircut can spiral you down, down, down while a gesture of kindness can make things all better.

So I ask this of you.  When you are out and about today, in interactions with others or even when you find yourself facing self-doubt, stop.  Think about how your actions create a ripple effect.  All it takes is a pebble to form ripples across a pond.  All it takes is a kind word or gesture- or a careless word or thoughtless action to make or break your day or that of those around you.  

Reward Systems?

The final goal in my long, long (did I say LONG?) weight loss journey is just over 60 lbs. That's a lot of weight.  I cannot imagine how...light... I will feel when it's gone.  More- when I pick up a box that heavy (and we do have them in my job) I can't believe that I am carrying that around on a regular basis.  I think that it might be a good idea that I put a 60lb box in my office, maybe try to pick it up on a regular basis.  Then again- that would probably make me cry- which I wouldn't want to do at work.  There is a study that says that losing one pound of weight takes four pounds of pressure off of your knee joints.  When I make my goal- I will have removed 240 lbs of pressure from my knees- that's far more than my starting weight!  Crazy huh? 

Anywho- I need something to work toward.  When you think of losing 60 lbs it's very overwhelming.  WW suggests smaller goals so here is what I am thinking:

Every 5lbs, a bouquet of fresh flowers.  I love flowers!  If I give myself a bouquet for every 5lbs, I have 12 bouquets to look forward to. 

At 20lbs, I get new "blingy" collars for the puppies.

At 30lbs- half way there- I get a spa service

At 40 lbs I get a carriage ride in Louisville

At 50 lbs I get a new wardrobe

At 60 lbs I get a new ring. 

I was thinking last night that maybe I can use this same system to quit smoking.  The problem is that it took me quite some time to come up with this list- and this isn't that many things.  :-)  I guess that's the problem and advantage all at once with being an empty nester.  If we want something, we just get it because we are past the expense of raising a child.  But here is what I was thinking in terms of quitting smoking traditional cigarettes ( I am going to use electronics to quit). 

At 24 hours- I get a new bottle of "girly" lotion. 

At one week I get Zumba fitness for either the Wii or the PS3

At two weeks I get a mani/pedi

At three weeks I get 3 new soy candles

At one month I get new sneakers

At 3 months I get  a Bed Bath and Beyond Gift Certificate

If/When I can accomplish these two very big goals- especially at the same time- I will have made huge strides in caring for ME.  Both will help with my RA and Fibro, as well as other internal systems.   One of our "problems" as women is that we take care of everyone else first and let ourselves go in the process.  But if we don't take care of ourselves- who will?  It's time that I do something big for me- and therefore, these are my goals. 

Taking control of my weight loss efforts.

     I have been very public with my struggle with my weight.  Over the last year I have been back on Weight Watchers.  I have struggled with the same 5lbs over and over in that whole time.  STOP- before you think "gee- Weight Watchers must not work!" it must be taken into account that I have been on Prednisone- which is notorious for causing weight gain- the entire time.  When you go to the doctor as often as we do, and when we are sitting there side by side with infusions pumping into our bodies- we tend to talk about our medications and side effects and there is a young lady who started Prednisone the same time as I did and by Thanksgiving (7mos in) she was up 54lbs.  I credit WW with me not having a gain period, much less over 50lbs.

One thing that I love about Weight Watchers is that there is nothing- absolutely nothing- that is off limits.  The school of thought is - everything in moderation and if you are going to have something that would traditionally be considered "bad"- plan for it.  Their guiding principle is the basic for any weight loss- Eat Less, Move More.  It's that simple.   Of course- that's easier said than done in many cases. 

When we are faced with a chronic illness- especially one that is centered around chronic pain (Hello RA and Fibro in my body!)  the Move More part of that principle is particularly challenging.  Not only does traditional exercise just plain hurt, but one of the "side effects" of chronic pain is chronic fatigue.  It's just plain exhausting to hurt all the time.  When I get home after a long day- I am wiped out and don't want to even think about driving to the gym, working out for 30-60 minutes, driving home, starting dinner, cleaning up and all the rest of the evening "stuff".  If I did that, I wouldn't get to bed until goodness knows when.  When you consider that I get up no later than 4:30 so I can be "unkinked" in time to go to work and be productive- it makes me shudder.  Well, I am trying a new (to me) solution for that.  There is a relatively new school of thought that you don't have to do 30-60 minutes all at once to have an effect.  You can do non-traditional exercise and spread it out in short bursts over the day and it still counts.  That seems far more managable to me. 

My plan?  I am starting by doubling my stairs.  When I went up this morning to get dressed, I went up, came right back down and went right back up.  I am also putting my downstairs half-bath off limits except for hair and makeup.  I keep them there so hubby and I can get ready at the same time.  If I use the upstairs bathroom- and do the up-down-up thing, I will exponentially increase my stair climbing.  At work we are in a heavy web order time.  Rather than filling all the order that need to be shipped and then wheeling them all back to the UPS pick up area, I will fill an order then walk it back immediately.  That adds steps to my day.  Then there are commercials.  In this day of the DVR/Tivo, most of us fast forward through those annoying ads.  Well, I am thinking why not use those to my advantage?  If I get up and walk in place (during boring commercials) or dance (to the ones with catchy tunes) or just do a few yoga poses every single time- that's 17 minutes per hour show.  Two tv shows a day won't even dent my DVR but it will give me over 30 minutes of exercise!  Hubby works almost every Saturday so I can take that time to "give" myself a trip to the Y on the weekends.    We pay for the membership but I have found that it's very hard for me to work that in during the week.  On the other hand, it's very good for me to spend time in the therapy pool so I need to give myself the gift of the time to do it.  If I go to my folks, I can give myself (and at least one of the puppies) a nice long walk.  Goodness knows I get up early enough that I should be able to get my rear end out there and take the walk before my parents get up. 

As for the Eat Less portion- that can be a challenge too when you are a "volume eater" like I am.  What I have learned with WW is that I can eat as many fruits and (most) veggies as I like, and treat everything else like a side dish.  I use the small (10") plates for my meals while Hubby uses the "normal" plates.  I also eat my veggies first. If I want seconds- I wait at least 20 minutes to see if I am REALLY hungry or if I just want more because I ate without paying attention.  I have stocked up on high volume/low "points" foods like light popcorn, grapes, baby carrots and other snacky items.  I also have a heavy sweets thing in the evening.  Over the year that I have been with WW I have learned portion control and that I can make a pint of Ben and Jerry's last for 4 servings if I make ice cream cones rather than putting it into a bowl (where it looks SO small) or eating right out of a carton.  I have learned to split my higher "points" sweets and snacks into serving sizes immediately after bringing them home so that I don't have a whole bag or box in front of me.  It only takes a minute or two to take scones or muffins or whatever into freezer quality ziploc bags and toss them into the freezer.  If they are just sitting on the table- I will do the "I have to eat these now because I don't want them to go bad" thing.  Another advantage to breaking up the snacks is that I can grab them and go.  I do it with PopChips (if you haven't tried these- you are SO missing out), almonds,  pretzels- anything I buy to snack on- and put them in my "snack drawer" so they aren't in sight all of the time but easy to grab on my way out the door in the morning.  The most important thing is that I don't deny myself anything.  If I want a plate of spaghetti with sauce- I have it.  I just plan ahead for it by either having very low points things all day or by earning extra points through activity. 

There are two very important things that I have learned by sitting in my meetings almost every week.  The first is to stop beating myself up when I go off plan for a meal.  Just because I went over my allotted "points" for dinner tonight or dessert or even a whole day- it doesn't mean I have completely derailed my efforts.  The message is much like that of AA.  It's that we must take our efforts one meal at a time.  If we get off track, get back on track the very next meal.  The second thing I have learned is that I must make this lifestyle change about me.  I deserve good foods. I deserve to feel better. I deserve the time it takes to do the extra movement.  I deserve the benefits that losing the weight will give to my body in terms of lessening the stress on my already under attack joints.  I may have to work harder for this because of the challenges of the side effects of the medications and the pain associated with traditional exercise- but I am worth the extra effort. 

Tomorrow- how I intend to reward myself to keep my motivation.