Sunday, March 28, 2010

We have a good time and we pay for it?

A big resounding YES to that question.  Now- I know that most people do too in some form or another (remember Hangovers?) but for those of us with chronic pain, our "payment is entirely different. 

Last week I had a wonderful time.  I went to our annual company manager's meeting in Orlando.  I got to spend time with the other managers in my region (the BEST region full of folks in the company TYVM) and network with the terrific folks that I went to "new manager's training" with a couple of years ago and their friends.  I ate terrific food- they feed us like every meal is our last- and enjoyed the entertainment.  I saw all of my regular vendors and checked out a LOT of neat products.  I even ordered a few. 

Then came the payment side.  I was in the air probably 30 minutes on the way there and some of my joints started literally screaming at me.  I will assume that was related to the cabin pressure.  I enjoyed my flight but I have never been so glad to be off of a plane.  By the time we landed and got our luggage the pain had subsided so I was good to go.  The next few days were fine except that I was beyond exhausted.  They kept us going from 7:30 am till 10 pm and beyond every night.  That's pretty late for me to be go,go,going.  It would take until midnight or so to decompress and get to sleep and being that it was late and I had to get up early I didn't sleep well.  There was also a lot of walking involved.  Walking from the hotel end to the conference end of the resort, walking from one area to the other.  Walking the trade show floor.  By Thursday after lunch, my feet had had enough.  The swelled up so much I couldn't even think about wearing shoes any longer.  I had to run (ha!) to the gift shop and pick up flip-flops and just pray that there wouldn't be any consequenses professionally.  Fortunately- there was only one class left and then our very casual end-of-meeting party to attend. My dad sent me a message via facebook to use the hot tub to soak my feet- and I jumped on that until the lightening got so bad that it was almost daylight when it flashed.  I also gave thanks that I had thought to pack my spa socks because they were a godsend in the airport and on the plane home.  When I got home- I was exhausted.  The trek to the far side of the parking lot had me using my "smartcart" for support.  Yesterday I spent the majority of the day re-charging.  I didn't change out of my pajamas until 5pm when I woke up from my nap.  I finished the day with some power-shopping for stuff we needed for the house and then let PF Chang's cook my dinner.  It is now 10:53 and I haven't even changed out of my jammies yet and only plan to throw on some sweats to go to the grocery store. 

Today I am back to my routine and reflecting on my last week.  Was the experience worth the pain- absolutely, 100%, no questions asked.  The only question is- what will I do differently next year?  Well- it's time to talk to my doctor about a cane and a handicap placard for when I go on trips.  I think I will have to pick up some new "stylish" crocs  and shoes this year so that I can have the comfort and still look somewhat professional.  I will bring shorts and *maybe* even my bathing suit so I can spend time each evening soaking in the hot tub.  I am also going to plan on bringing my backpack on rollers instead of my laptop case so that I can use that to carry all of the samples and things they give us- because lugging that stuff gets heavy really quickly.  More importantly- I am putting it all on paper now so that when I go to pack for next year- I don't forget! 

Tomorrow it is back to work for me- and back to my normal routine. I hope everyone has a lovely palm Sunday and is busy making plans for a terrific Easter next week! 

Saturday, March 20, 2010

It's been a terrific week

Wow- what a week it has been.  I was given a promotion- which is wonderful news! Part of that promotion means that next week I head to Orlando for an annual manager's meeting.  I love that trip.  Last time I went I met wonderful people and I learned so much! Even though I don't have a lot of time to prepare-and will miss my honey and my puppies- I am really looking forward to it.

 I met the gastroenterologist who did a thorough exam.  She told me she was not pulling me off the MTX until she sees what is going on and sent me for blood tests.  Eight vials later and I think they tested me for everything but a DNA match to the Lindberg mystery.  The next morning I had to go back to the hospital for an ultrasound.  I wish I could tell what those pictures meant but they really are just a blob to me.  When I get back I am sure I will have test results but - now for the glimmer of hope- they called me while I was in for the ultrasound and told me to stop taking my Flexeril immediately.  It seems that it can cause the elevation in liver enzymes that I have been experiencing!  While my Fibromyalgia is a pain (literally) I can live without that medication.  If it is the solution that will allow me to stay on methotrexate- I will gladly give it up. 
If the ultrasound comes back clear- which she suspects it will- the next step will be a biopsy of the liver.  They will take a couple of small samples to see if it is just "injured" or if it has progressed to diseased.  The doctor feels we are just dealing with an injury. 

Besides my wonderful promotion- and my trip to Florida- what I am thankful for is that I have two wonderful specialists who are conservative in their treatment of me and my disease(s).  More- I am thankful for the outpouring of support I have received from my friends and family for the medical issues.  But the thing I am most thankful for this week- is the number of people who believe in me (even when I am feeling insecure) and who were genuinely happy for my promotion.  Colleagues, friends and family who were proud of me and who have faith that I can do this job.  That gives me the inner strength that I need to tackle this all at once. 

Thursday, March 11, 2010

When Life Throws You a Curve Ball.

I spent last night having a personal pity party.  We have been watching my liver enzyme levels for the past several months.  A normal reading is AST 5-40 and ALT 7-56.  Mine have been fluctuating between 56 and 122 for both.  At my appointment in February, my doc and I agreed that we would lower my MTX slightly and see if that did the trick.  Evidently- it did not as my results are back from last week's blood tests (I love my doc's three day turn around time) and my numbers are at 205 and 174.  Never, ever let it be said that when I do something I don't do it with gusto.  :-s

Though I should have seen it coming- I was very hopeful that by lowering my MTX- we would head things off.  I do not want to give up my Methotrexate.  I have said that a thousand times- to my doc, to family members, to myself.   I know that everyone has different reactions to meds- but for me Methotrexate has been my savior.  Over the last two years I have gotten to the point that I feel better than I did before my diagnosis.  I started on the feeling better path right after we put me on MTX and just got better and better as we upped my dose.  It was only after I had been on it almost a year that we added Enbrel to the mix.  When I started having my liver issues I offered to go off every other drug in my regimen if it meant keeping the MTX.  That didn't fly with my doc. 

So now- I am headed to a Gastroenterologist.  My doc actually scheduled my consult with the GI doc for next week.  I have been pretty much guaranteed that she will pull me off my MTX immediately.  That scares me because pre-mtx I was just about at the point of needing a cane.  I don't want to go back there.  I don't want to go back to taking hours to be able to get dressed in the morning.  I don't want to go back to having to time walking the dogs so that the pain is not too bad yet.  And there I go whining again. 

In the hour and a half or so since I began this post, I found out that one of my online friends lost her 1 year old daughter last night.  It rather makes my whining above seem pretty foolish.  My heart just breaks for her.  It puts things in perspective very quickly. 

For me that means that I am going to spend the next week- while I wait for my doctor's appointment- giving thanks for every single thing- big and small- in my life.  I am going to hold my loved ones closer.  I am going to take things in stride because really- the alternative is a choice I don't want to take. 

Saturday, March 6, 2010

Today's Aha Moment

I Had the most wonderful day with my honey and my puppies today. The weather was just beautiful weather.  It was in the 50's and sunny out- very much the peek of spring that has been missing in our lives.  When Jim got out of work we took a mini-road trip back to Madison.  When he called to tell me he wanted to go up there and get burgers- I just rolled my eyes and changed my clothes.  We really enjoy our rides together and it is not unusual for us to drive for good food.  In this case it is only amusing because we drove an hour each way for a meal of White Castle sized burgers and fries- but much better quality.  It was all of a $15.00 meal- including tip. 

We came back home, we took a nap and then when we got up we ran to the store and phamacy and then got the dogs in the truck and took them to walk along the river.  When there aren't a lot of people around there we can let Harley off her leash and let her run.  This time we let the dogs run- and I ran a little with them. Just a little- but more than I could have a year ago.  As an overweight smoker I always joked that the only way you would get me to run was if someone was chasing me- and today I got those legs moving.  And now I am having a really yummy salad for dinner then watching Survivor with Jim.

It was as we lay down to sleep this afternoon for our usual "family nap" that I had my Aha Moment.  I was on one side of the bed, Jim on the other with our hands touching and Auggie was laying with his head on my leg.  Harley started out near Jim but moved over to snuggle against my other leg. It was a very sweet moment and as she settled in, a sense of peace stole over me.  I looked down (up?) at them; smiled and thought "Yes!  This is my life and it is just how it should be."  That was my last thought as I drifted off into the best sleep I have had in weeks.  Two hours later I stirred and stretched and the puppies stirred and stretched with me and then came jumping over to give me kisses before I helped my little old lady Harley down off the bed. 

I am so thankful for the day we have had together.  It was completely spontaneous, it was not something remarkable, but it was the kind of day that if you have that moment as I did, you realize that you are so truly blessed and none of the "bad stuff", none of the stress, none of your worries- can take that away.  It also sends me to bed tonight open to another day just like it tomorrow. 

Friday, March 5, 2010

Working for the weekend

Ahhhhh, it's Friday!  It has been a very long week of budgeting but that is both done and has been accepted- high five to us for getting it done on the first try AND for getting it submitted early enough that we don't have to drive to Dayton on Tuesday.  Today I have three very important meetings.  We have our usual staff meeting at 8:00, I address the faculty of the Business School at 10 and we meet with our "client" at 2.  After that is over, once I make notes, I am RUNNING for my car as I am more than ready for this weekend to start. 

I have nothing exciting planned- I am not doing anything more strenuous than working on my Vision Board and doing some journaling- but I am just so thankful to have two days to just relax and get myself centered again.  As that has been difficult of late- I look forward to letting the tension drain from my body and just sitting in the quiet with some light music until the peace takes over. 

I hope you all have a wonderful weekend. 

Thursday, March 4, 2010

Accidentally finding the silver lining.

I have been having a very difficult time lately.  At the moment, my relationship with my son is strained because of a very big disagreement that rather blew up on us.  The stress of that, along with work stress and worries about my health gave me the build-up that I needed to take me off the "vaping" path and back to smoking for a couple of days.  I was past a week- almost at 2 when I "lost it".  So I have been beating myself up on top of everything else. 

I was talking to a friend last night who suggested I talk to another mutual friend who was having issues with his daughter.  Just that suggestion was the kick in the pants that I needed.  I thought about our mutual friend and the terribly difficult road that he has had with his daughter for the last several years.  Comparatively speaking- it makes my troubles with my son seem insignificant.  It's the situation where, should I whine and cry to him- he would rightfully say- "Oh I only WISH that were the extent of my problems".   And yet- when I was in the midst of it all- It seemed enormous. 

So I am taking a step back.  I am looking at the good beside the bad.  It's very easy to forget the good when you are filled with anger and hurt so by acknowledging the good things- I am opening my heart to let the anger and hurt go.  It won't all happen at once.  I know that.  It may even be several days before I am ready to consider contacting him- but this space and time will be good for perspective- and I think I need some of that.

All I know is that glimpse of the good parts last night allowed me to go back to bed and when I got up this morning- I had a new feeling of resolve.  I withstood the urge for a cigarette, I researched some things to help with some of my work issues, I concentrated on the serenity prayer for a good long time.  Now my heart is a little lighter and I can look forward to the weekend.  For that- I am grateful.   

Monday, March 1, 2010

Gratitude in Loss

My great aunt passed away this weekend.  She was 82 years old.  She was a very interesting lady.  In addition to owning her own insurance company in Chicago until her death (she returned to our hometown in 2001) she also spent a lot of time as a missionary.  Because she was always away, because we were a military family and because we lost my grandfather (her brother) back in 1975- we didn't get to spend a lot of time with her but until her own death- my grandmother kept us up on what my aunt was doing with her travels and it was always something pretty neat.  What is interesting is that she lived a very full life- and she did it with Rheumatoid Arthritis. 

We kids always knew she had arthritis.  We knew that she had multiple joint replacements (all of her knuckles for crying out loud- amongst others!) and that she had the visual signs of arthritis.  She never complained, she never made a big deal about it- it just was.  It wasn't until I was diagnosed with RA myself that I was told that she also lived with the disease.  I think it was mentioned because she is the only family member that has it and she is an "outer branch" on the tree- not a direct relative so that ties us in a little closer.  I think we never heard about it prior to my diagnosis because she lived her life as if it were a fact of life.  She was not a victim to her disease- it was just a part of who she is.  I never thought about it until this weekend- but that must be where I get my own take on it from. 

In the end- she was very ill and in a lot of pain.  She chose her time to go by stopping eating on her own volition.  She had chosen no extraordinary measures and my mom's sister was at the hospital Friday night to see her and sign the paperwork to call in hospice.  Saturday morning, the hospice worker (who is a friend of the family) was there doing her evaluation when my aunt passed.  I am grateful that she went peacefully and gracefully- the same way she lived her life.  I am grateful that she is no longer in pain.  She has requested that in lieu of flowers, donations be made to the Arthritis Foundation.  For my part- when I walk the Arthritis Walk in May in our hometown- I will be walking in her memory as well as for my own awareness efforts.   It is the very least I can do.