Sunday, May 31, 2009

Another Gorgeous Sunday

As I write this, I am sitting outside on my patio and it is a lovely 67 degrees. The sun is breaking through the trees that extend out and cover the patio. Harley is chasing the squirrels that are scampering in those same trees as much as she can from her 25ft lead. The coffee beside me (my honey ground some Dunkin Donuts beans for me <3) competes with the honeysuckle for best smell as the breeze gently brings them both up to my nose. All in all, it is a perfect setting for having spent the last hour reflecting on just how blessed I am.

Even in my darker hours, I know I am very, very fortunate. I have a husband who loves me as much- though in a much more mature way- as when we were married over 23 years ago. I have parents who are just wonderful people. They are a great example for all of us as they are still as crazy about each other as when THEY were married over 43 years ago. They also show each one of us; their children, grandchildren and sons-in-laws their love and affection for each of us in a myriad of ways. I have two sisters who are beautiful both inside and out who, though I am the oldest, teach me things all the time. I have a son who I love dearly and who has no problem telling and showing me that he loves me in return. I have learned that I may not always LIKE his decisions but ultimately, I am proud of him and the man he is becoming. His determination to do things his own way is a part of me that both makes me crazy and quietly proud at the same time. I have a host of "in-laws" who, though we don't get to spend nearly enough time together, are still family and I love dearly for their diversity and love for the ones that I love. And we can't forget Harley- my loving companion who is just as sweet as can be and keeps me moving when I just plain don't want to. You know, we girls always thought that we had a pretty untraditional upbringing considering our military background and moving all the time. We girls fought and made up, we ganged up on one another and went through loving and disliking one another- but as I look back and compare to many families- we were practically the Cleavers. LOL

I am also blessed that Jim and I both have good jobs even in this economy. We have a roof over our heads, we have food in the pantry and freezer and we have heat and ac to keep us comfortable at night. So very many people are lacking those basic things. We also have our health. I know- I just said that despite living with Rheumatoid Arthritis and possibly Fibromyalgia. But if you took the RA and Fibro out of the equation - we are both very healthy. Even more- we have insurance to help us cover my many doctor's visits and prescriptions that run into the tens of thousands of dollars a year. Yes- you read correctly- Enbrel alone is $20,000 a year. But with my insurance- it only runs us $40.00 a month for that one- thank goodness.

We are blessed to have a few really good friends who have kept in touch with us despite the distance after our move two years ago. Their love and friendship have meant the world to us and took the sting out of finding out who lives the "out of sight, out of mind" way of handling their relationships.

Even my RA has been a blessing in disguise. I bet you are thinking "She's gone nuts!" But it has. It has forced me to slow down. It has forced us to be more resourceful. In rough financial times pre-RA, I would have just taken a second job. That would have helped us to get through the rough spot, and then we would have started to live up to the extra income without saving anything. Then something would happen that would set us back again and we would take extra hours to get through that. It was a vicious cycle. Now- that is just not possible. Now- when we hit a rough patch, we automatically tighten our belts to get through. We may not have savings, we may not have a ton of disposable income, but we have found that we do have what it takes to cut back and make it through. And that is a WONDERFUL feeling.

I am so blessed in so many ways that I could keep going on forever- but it is time for my MTX shot and my Sunday nap- something else I never would have scheduled before my diagnosis.

I hope that everyone can take a few moments today and count their many blessings.

Saturday, May 30, 2009

We DID It!

Dad and I got out there this morning and rocked our 5k Arthritis Walk. Louisville did a good job of hosting it- better than E-ville at any rate. One thing that makes me a little sad is that RA- and Arthritis in general- are so easily ignored.

Perhaps it is a lack of awareness. Perhaps it is that it is not considered a "fatal illness". Having walked the Breast Cancer Walks- which are a wonderful cause- and having seen the turnouts for the ACS's Relay for Life and then looking at the participation for the Arthritis Foundation's last two events serves to underscore just how invisible our disease is.

Oh well- I still feel like I accomplished something today. I am definately paying for it now (multiple ice packs thanks) but it was well worth it.

Great job to all the walkers, the volunteers and the folks who were out there to cheer us on. The River City Drum Corp was FANTASTIC. Those kids really kept us with a pep in our step through the whole walk and the sponsors had a lot of good information out there for us.

Now I am off to nurse my joints before my little princess needs her evening constitutional.

Thursday, May 28, 2009

The Arthritis Foundation Walk

This weekend is my second and final walk of the year. We did the first one in Evansville, IN a couple of weeks ago.

I just want to share what this walk means to me. In May of 2004, 2005, 2006 and 2007 I walked the Avon Walk for Breast Cancer in honor of my beloved Granny. That walk involves serious fundraising (minimum $1800 per walker) and then the walk itself is 13.1 miles the first day (up to 26 is you are super motivated and fit- which I am not-lol) and then tenting out overnight and then walking a second 13.1 back to the starting point. It is long, it is tiring, it is worth every single blister that I got-and I averaged 10+ per walk-lol. In the four years, one year was absolutely beautiful, one it was snowing, and two it was raining. But I would have walked it again and again and again.

Then- RA entered my life in August 2005. 2006 was a rough year. I did my walk and packed so much Thermacare along that I was a giant heat wrap all night. After the walk it was weeks before I could walk right again- it triggered a serious flare. 2007 I was almost afraid to walk- but I was determined because we raised enough for my son-who was finally old enough- to walk with me and because I was leaving the Northeast a few weeks after the walk. I did it- I completed the whole thing- and I paid enough that I knew that it was my last one. :-(

It has been two years since that last walk- and last year I really, really missed it. I missed the fundraising for a cause I believe in. I missed the training, I missed the camaraderie. I try very hard to live my life positively- but that was one thing I could not get past giving up.

Over the last year I have begun my methotrexate and got it to a good level for me, I have begun Enbrel- and it is working well- and most importantly- I adopted Harley who makes me get out there every single morning and night and put one foot in front of the other.

Those three things made me confident enough to find a new walk to work toward and I recruited my dad to walk with me. At the beginning of the month- when we did the first AF walk of the year- and we did it in good time- I felt like I had reclaimed a lost part of my life. And it felt GREAT. I can't wait for our walk on Saturday. If I do these three miles with as much ease as the last three- there will be no stopping me!

Wednesday, May 27, 2009

A fellow blogger made my day yesterday!

When you are dealing with RA, very often you feel that there is just NOONE that understands what you are going through. I have been fortunate enough to find several blogs that, when you read them, just make you say "Ahhhhhhhhh- there's someone who knows!"

Yesterday, one of the blogs that I follow posted a "60 Second Guide to Rheumatoid Arthritis". I literally rejoiced when I read it. The gentleman was kind enough to not only post it, but to also create a PDF version that we can use to educate...well anyone! I sent it to my family and friends, I posted it on Facebook and Myspace, I Re-Tweeted it on Twitter. Now I am sharing it here. The more people we can educate, the better. Like with everything, with RA- knowledge is power.

Enjoy the article. And if you read it and it helps you understand or if it helps you to educate someone- leave him a comment and let him know.

Tuesday, May 19, 2009


I can't believe how much a difference a little sleep can make in my life. It has been a huge change to go from an average of 4 hours a night, which I did for over 15 years, to an average of 7 hours a night. I definately feel the difference when I DON'T get my sleep. One reason my Rheumy feels that I may be dealing with Fibro as well as RA is the sleep issue. For months- and I think it was all stress induced- I haven't been sleeping full nights and definately feeling it in the mornings and evenings with more joint and muscle pain. So she gave me a muscle relaxer to take in the evening to see if it would help me with that problem. It does- somewhat. All I know is that the more sleep I get- the better I feel. Last night I was really sore and took two of my pain pills (I have permission to take up to 8 a day) and my muscle relaxer and once I was able to fall asleep. I slept like the dead. This morning- I feel WONDERFUL!

It really makes me want to kick myself for taking sleep for granted for so many years. Who knows how much less damage I could have done to my body. I am not crazy- I know that I could not have stopped the diseases from hitting me- but could I have minimized the damage? We will never know. But I do know that I am going to focus on getting more now that I see the difference.

Sunday, May 17, 2009

With everything you give up, you gain something else

I was lamenting last night some of the "me" things that I have "given up" since I moved out to Indiana. Fortunately, my brain is in good enough a place that I immediately switched gears to the things I have gained in return.

So here are just a few things that I have given up:

Bi-Weekly Manicures.
Bi-Weekly Pedicures.
Bi-weekly to Monthly Haircuts.
Regular evenings out with my honey and friends.
Regular Massages.
My membership to Weight Watchers

A few things I have gained in return:

Time- those things all take time.
A lack of need for a 2nd job (they take money too!)
A renewed sense of self
Less stress

Though I do miss being able to pamper myself on a regular basis, I have found that I don't NEED it, I just enjoy it. I have found that the things that were a part of being a little on the "high maintenance" side, did not define me. I spent so many years- and thousands of dollars- on my hair, my nails, my toes, and worrying about my appearance that I lost sight of the fact that those were indugences not necessities. Heck- before my RA- I might not have needed the massages had I not been working two jobs for so many years and constantly stressing myself out.

Of course, now with the Rheumatoid Arthritis and possible Fibromyalgia to boot- the massages are medical as well as indulgences. I am going to have to figure out how to work them back into my life. I am also going to have to either work back in Weight Watchers or a membership to the Y because losing some (or all) of this weight would be a big medical benefit as well. As for the rest- I am doing just fine without my acrylics, an occasional pedicure when I do a charity walk will do me just fine, and as for my hair.....once it grows back I can just as well have highlights at someplace like Supercuts as I can at any salon since I don't have my Jody any more. The grays are peeking through and though I have accepted them- I could live with "blending" them instead of having them stand out so much.

But back to the things I have gained- my life is so much more peaceful, and so much more full. Interesting thought that- fuller with less. Something to ponder as I go about my day.

Tuesday, May 12, 2009

It's been a crazy couple of months.

Unfortunately, we lost Mom F just a few weeks ago. The whole thing was just heartbreaking. Every day I am just thankful that I had 25 years with her as my mom too. Never once did we have the "inlaw" boundaries thing between us. I only hope that everyone else is able to find some peace. It is sad how death of a loved one brings out the worst in people. Just another reason I am glad we are out here in Kentuckiana rather than plopped in the middle of everything.

Jim's job had more layoffs yesterday. Just when it looked like things were getting back to "normal" for them- another 20 jobs were cut. It really is getting scary. Each time they trim more staff, my heart jumps into my throat- even though we have a plan if he does get laid off. I am just very, very fortunate that my job is relatively secure. We just need to look and see where we can cut back in our daily lives so that if it happens- we can be okay.

On top of all of that- it looks like I may be facing Fibromyalgia on top of my RA. Evidently my RA is under control- but I am still having a lot of daily pain. Now that the joints are doing better- we can point to the muscles as where the current pain is originating.

It is very difficult to practice gratitude and positivity in the face of all of these challenges. During my review yesterday (which was good) my boss mentioned that she has noticed the stress getting to me. I was planning to work on Friday- just to add more comp time- but I think it is time to take it off and just relax. I think I need to take Harley out and just play. I think I need to get caught up at the house and to take a day that is for nothing other than to consider all the good things in my life. Usually when I can get my mind into the right mindset- one where I am feeling positive and thankful- the answer to my challenges come more easily.