Tuesday, March 29, 2011

Traveling Solo

Recently I posted about a road trip that hubby and I went on to visit our friends and family in Massachusetts and New Hampshire.  Having prepared and really thought this out ahead of time- I had a "minor" flare when I came back but it was nothing compared to the last trip. 

Today I am off again, this time on a business trip to Orlando.  I enjoy this trip every year- I look forward to it on a business and social level.  On an "I have RA and Fibro" level- not so much.  We spend quite a bit of time learning new things and networking with our peers but we also spend more than a full (long) day on the trade show floor and also walking all over the resort back and forth.  I am actually wearing my pedometer this year to see how many miles I log but I am sure it will be a lot.  I am also flying there and back.  Though the dress is "business casual" for the most part, last year by the end of the third day I had to buy flip flops (have you seen resort prices for flip flops? Insane!)  because my feet would not fit into my shoes.  On Friday, when I flew home, I ended up having to take my shoes off when I went through airport security and never put them back on.  Not even to walk to my car.  That trip was the straw that broke the camel's back in terms of breaking down and needing a handicap plate because my car was on the far side of the long term lot.  I learned a lot from that trip and am applying it this time.  Here is what I learned:

1-  Fly non-stop if at all possible.  Last year I had connections.  I was already exhausted and hurting and walking around and sitting in an airport for an extra several hours just stunk.  Non-stop from Louisville to Orlando is only 2h 10m rather than the 6 hours it took to get there and back when connecting flights.

2- If you have an assistive advice- no matter how "good" you feel before you leave- bring it!  I am, to put it gently- not a fan of my cane.  However, since I have a nagging pain in my hips and knees and know that by the end of the week it will be more than nagging- I am bringing it.  In addition to the fact that it will help with my stability and mobility but Southwest will also issue me a blue "sleeve" for my boarding pass that will allow me to pre-board early so that I can find a seat that will allow me to really be able to stretch my legs out when no one is in the aisle and move around a little more than if I boarded "late" and end up in a middle seat. 

3- No matter where you are going- bring your comfies.  I am going on a business trip and though I am packing professional clothing, I am also bringing my croc sandals and a pair of flip flops.  My boss is aware of my medical condition and actually has RA as well.  She completely understands it if I need to change into something more comfortable on my feet as long as it enables me to do what I need to do.

4- Take your downtime and rest.  We are scheduled literally morning to night- but if we really need to, we can bow out in the evening to rest, we can.  So when we are doing our networking events, if I have to, I will just excuse myself and go to my room and put my feet up or head to the hot tub to soak my aches.  I won't be the only one who leaves early- and if I am the first- well, I will start a trend because believe me- once the first person goes- others will follow suit.

5- Don't hesitate to bring along anything that you may need to keep you going.  I have packed along muscle rub for, my muscles-natch.  I have dried mangos, sugar free hard candies and rice crackers to keep me on track with my diet since they feed us CONSTANTLY but they aren't always the best choices.  I have a box of Snapple lite half tea/half lemonade to add to my water so that I WILL switch to water after lunch rather than coffee all day and night as our choices are usually coffee, hot tea, water or soda.   I have my spa socks to comfort my feet at the end of the long days.  

6- Check everything that you can.  Despite my hubby's misgivings- I am not only checking my bag but my laptop as well.  I have a bag that doesn't necessarily look like a laptop bag and have all of my materials that I need to bring with me "padding" my laptop it lessens the chance of damage.  I used to bring it as a carryon, and if I need to on the way home I will but for the way down- it's being checked in with my luggage.  On the plane I will have my purse, my cane and my Nook.  I can read once we are in the air that way and getting settled on the plane and getting off the plane will be easier.  I am also bringing a bungy cord to strap the laptop bag to the suitcase so that I can roll them both with one hand leaving the other free for my cane.

7- Finally- Use your airport services.  For less than $5.00 per bag (depending on your airport), you can have your luggaged checked through the skycap before you ever step foot inside the airport.  This service is invaluable, especially in larger airports.

That's all I've got!  I hope that if you are traveling soon, some of these tips will make your trip more managable and less painful in the long run.   

Friday, March 25, 2011

Chronic Living

     My first little e-book, Chronically Positive, has received a really nice reception.  It's not a New York Times Bestseller by any means (lol!) but of you google it- it's the first thing that pops and that's a pretty neat thing.  I always wanted to write.  When I was a kid that was my version of wanting to be a police man or fireman when I grew up. 

     What held me back was a fear of failure and not knowing where I wanted to go with it.    Like everyone else who wants to become a writer, I always imagined I would write "The Great American Novel".  Conventional wisdom for writers says "write what you know" but I kind of felt that I didn't know anything worthy of a making an interesting novel.  I would start, put it away, and forget about it and then repeat the cycle.  Finally I just stepped back, put the writing bug in a particular compartment in the back of my brain and changed my dream.  I love books in any way, shape or form so what could be better than helping shape good writing?  I thought long and hard and decided that my dream job would be editing fiction.  It would keep me in the realm of books and if I could do it at home- in my jammies- life would be just about perfect. 

     Then I started this little blog and I found all of you.  The people who read this blog have been so supportive and so encouraging of my journey.  I have enjoyed writing most every post.  Even when I did a series and forced myself to write, it never became a "job".  Instead it challenged me to keep going even when I didn't really feel like pushing myself.  As I wrote and wrote and wrote (this will be the 336th post!) and wrote both from my head and my heart, the door on that little compartment in my brain opened up and I decided that I definitely know a little about living well with an adverse situation so I challenged myself to see if I could complete a book. 

     Chronically Positive may never sell to anyone who doesn't know me but I didn't write it to be a money-maker.  I wrote it as a personal test and not only did I pass my test but more importantly, it helped me to find my voice.  When I hit the "publish" button, something inside me gave a deep sigh.  It was a feeling of having completed something that had been a long time coming.  I thought that I would be satisfied when I shared it with the world but it seems that there is more in there just waiting to get out.  And so I being again. 

     My next project is entitled "Chronic Living".  Like Chronically Positive, I am writing it not just for those of us living with a chronic illness but anyone who is experiencing difficulties in their life.  I have a list of 10 "chapter" ideas thus far and have already begun working on them.  This is going to be a slow process because I want it to be better than the first because I want to grow from the first. 

     Now I am asking for your input.  The title "Chronic Living" means to me that we are on a continuous journey to live with love, peace, happiness in our lives.  It's about living authentically.  It's about facing our challenges head on.  My question for you is this- how are you acheiving your best life?  What do you do, even though you are in a less than ideal situation, to make the best of it?  You can leave a comment right on the blog, or if you would prefer not to share publicly- email me at ChronicallyPositive@gmail.com

I hope you have a terrific day and a lovely weekend! 

Wednesday, March 23, 2011

What's with the attitude?

A friend of mine from high school posted on her Facebook wall yesterday:
"Life should be lived with a little more GRATITUDE instead of so much ATTITUDE!"

It really resonated in the moment.  There seems to be another wave of "my life sucks" going through the world.  Quite a few Facebook status messages, the Twitter stream and people in real life.  It seems that people are getting more "snappy" with one another.  Personally, I think it has to to with the LONG winter and all of the snow and rain that are fraying people's nerves but in either case- it needs to change. 

I don't know what people hope to accomplish when they are projecting all the negativity.  Are they hoping someone will join their pity party?  Are they trying, when they jump down a stranger's throat, to make that person as miserable as they are feeling?  All that they really accomplish is spreading their nastiness further.  It certainly doesn't make anyone feel better.  Think about it.  If you are around someone who is just blatently cranky, doesn't it make you feel like you could just smack them?  No matter how hard you try to be pleasant, negativity spreads like H1N1 before vaccines. 

With all that is going on in the world right now; the earthquake and tsunami in Japan, Haiti still recovering from their earthquake, the troops deployed in Iraq, Afghanistan and now Libya- is it really a crisis if your tire is flat or if you are running late, if someone cuts you off in traffic or your husband or kids are being a pain in the ass?  Is it necessary to berate the waiter who brought your dinner a little cold or the cashier who is going a little slow today?  It's not going to make you feel better, it will make them feel horrible, and they probably have a lot going on in their life too and you just compounded it. 

So what can we do if we encounter one of these people?  Well, the first thing we can do is be thankful that we are not them.  If it's someone that we know, we can always combat their negativity with positivity and try to turn their attitude around.  A little "I guess that you can be thankful that ________" goes a long way or we can ask them what is GOOD in their life.  If that doesn't work we can always gently remove ourselves from their presence.  Give "It seems you are having a bad day so I am going to go work on something else and when you are feeling better come find me" works to acknowledge their bad attitude without engaging in it and excuses you from their negativity.  If the person is not someone that you know the best thing  you can do is to count to 10 (20, 50 even) before you respond.  That will give you time to center yourself and let their black cloud roll off of you before you respond in kind.  You can put them in their own little compartment and mentally close the door on them before you "catch" what they are projecting.  You can visualize your "go to" thing that you are thankful for in your life and use it as a touchstone to keep you in your happy place.  The most important thing is that  you don't let them infect you and then pass it on yourself. 

More gratitude, less attitude- the whole world would be a better place if we could spread that "condition" as easily as we spread our bad moods. 

Sunday, March 20, 2011

A Loser Like Me

Since last Tuesday night when I watched the current episode of Glee- I have been mildly obsessed with this song.  It should be required listening for everyone in high school. 

A negative to positivity? A conundrum…..


I am using this post as a way to work through some things rolling around in my head and it is a bit of a confessional. The post is very long. If you choose to read through, I will warn you that it’s a bit of a maze and yes, that’s how my mind works. If you choose to read through, I hope it sparks something in you as much as I hope it helps me get my head straight and get going on my path.


One of the negative byproducts of chronic positivity is when you fall into the pattern of not taking a critical look at the negative behaviors in your mirror and recognizing them for what they are. It’s easy when you are always finding the positives in things to put off making changes that you need to make because you are always looking for that silver lining. I don’t know if I am so much putting them off- permanently- or if I am just making excuses but it has been going on for a very long time and the more I do it- the more I hurt myself both physically and mentally. I have created an inner struggle between the positive attitude that I have worked so very hard to cultivate and that voice inside my head that says “You can’t. You aren’t strong enough. You are weak”. It’s almost as if I take my self-flagellation and make it okay to not do the things I need to do to make a better life for myself by trying to work on self-acceptance. I think I am talking a bit in circles, which is somewhat appropriate because they all affect one another, so let us get specific and put all of my “stuff” out on the table.

Last year at this time, I had essentially quit smoking. I was using the electronic cigarettes as a substitute and a pack of “real” cigarettes could last me 10 days. And then I made the fatal error of buying several packs on my way to the airport before my annual meeting in Florida. I was not about to pay Florida prices for cigarettes and thus began my not so slow decline. For the last year I have carried my electronics and used them on occasion but I have not given up the real deal. I have all sorts of reasons “why”- many of which center on the fact that my other half smokes, my stress level, etc. One week and I eradicated all of the good I had done.

I have been a member of Weight Watchers for a year next month. This is not my first go round. My first go round I lost 25 pounds before we moved and rediscovered desserts and cooking for two. In the four years since my first go round I have not only regained but gained more. I look in the mirror and see it and I hate it. I look at photos and hate it. I cannot by any stretch of the imagination blame the program. The program works. It’s me that doesn’t. First- because I am making meals for only two of us, I have to take into consideration my ultra thin husband’s likes as well- and let’s face it- who wants, or has the money, to cook two entirely separate meals every night? Second, no matter how “good” I am during the day- evening comes and before I go to bed I am crawling out of my skin for something “desserty”. A crisp or cobbler, ice cream, chocolate, cookies the cravings differ but the net effect is the same. We also know that if I don’t get what I am truly craving- I graze until I go to bed. The first time, I worked the program to a science and I made it a lifestyle change. Then I made an even bigger lifestyle change and eradicated all the good I had done.

When I adopted Miss Harley, we made it a habit to walk once in the morning and once at night. I did it every morning- barring travel- until we adopted Auggie. Auggie is not at ALL to blame, I am merely pointing out the timeline. Our agreement when we adopted Auggie was that we would walk “the kids” together if we adopted a second dog. Mr. Ultra-thin is also Mr. Doesn’t- Exercise-On-A-Bet so I knew this would be tough enough to do in the evening and I knew that the mornings would be just me since he already went to work at 5am. Add to this that we adopted Auggie on December 27th- in the winter- and Miss Harley does not do snow or rain except under duress. It is one thing to control one dog who is fighting you- but add a second (a puppy no less) who just wants to play and I could not do it on my own. For the winter, we shoveled off the patio and the area around it to give them room to do their business in the morning and only really forced them to walk at night. Come Spring- they had a routine- and so did we. To combat this, in January, I joined the YMCA. I had put that off for over a year already with excuses of my schedule, my RA, my “ this and that” and finally bit the bullet. The first few weeks I went faithfully on my own. I didn’t join any classes but I went and used the therapy pool and the treadmill and such. Then we went on vacation and I haven’t been back since. I basically eradicated all the good I had done.

When I was using the e-cigarettes, I got my breath back. My lungs were stronger and I *almost* felt like I could start the Couch to 5k program. Having never “run” in my life- that was one heck of a goal, but after over 20 years of smoking, I felt that good. When I was working the Weight Watchers program right the first time, I could get on that scale every week and know I was doing something good for my body- and I felt so proud of the changes I was making. When I was exercising regularly- even when it was just walking Harley twice a day, I knew I was doing something that would help me reach my goals. And that felt good. Giving up cigarettes made it easier to exercise- exercise and working the Weight Watchers program made it easier to lose the weight that affects both my joints and my self-esteem yet in each case I slid back and eradicated all the progress I had made. I don’t know why I allowed the self-sabotage. I only know that I have made it easy to do so.

One thing that has been pinging around in my head all weekend as I fought the “I can’t” is the old question when I think “I am too old to _______” . The best way I ever heard to combat the “I am too old to do whatever” is to ask yourself “How old will you be if you DON’T?” I have been working and working on how to rephrase that to fit this situation. Where will I be if I don’t? I have to find the strength inside me to not only keep that in mind but to NOT find the silver lining behind backsliding. No more “but I really enjoy my nightly dessert.” No more “it’s okay to keep smoking for now, I will quit when the time is right”. No more “I am too busy, too tired, too stressed, my schedule doesn’t work” for exercise. I need to find my inner motivation. I need to make small goals and celebrate them. I need to make the changes I need to get this done once and for all. How old will I be if I don’t? How many years will I have smoked if I don’t? How much damage will I do to my body if I don’t? How often will I look in the mirror with shame if I don’t?

Friday, March 18, 2011

Hello Free Weekend and Hello Spring!!

It's infusion day- more Orencia and then after that I am free until Monday.  Free, of course, is a relative term.  I don't have any plans per se but that means it's time to get caught up on some of the things I have let slide.  Hubby is picking up his television from the repair shop today.  He has been itching for a 42" HD flatscreen and we were offered one that was bound for a dumpster.  We agreed that if it was relatively inexpensive to fix- he would have it fixed- if not- no harm, no foul and it would go away as planned.  Well, the reviews that I read priced it as over $1000.00 new and the repair is less than $200 so I told him to go for it.  That means that when he gets it home this afternoon, we will spend several hours building a mount on our entertainment unit and then unhooking wires, moving TV's, rehooking all of his "stuff" (cable box, DVD, Wii, PS3 etc) hopefully before it gets too late tonight.  Then I can escape to the bedroom and watch "Inception" while he watches the March Madness Tourney. 

I have four goals for this weekend:

 1- I want to spot clean my carpet.  We have the Bissel "Little Green Machine" and I need to use it this weekend on a couple of spots and then vacuum the whole thing.  Two dogs mean a lot of hair and Auggie just went through a phase where he was shedding enough to create a third dog. 

2-I want to empty and go through my pantry.  It's pretty full and I am quite sure there is stuff in there that is expired so it's time to cull the stuff we are just not going to eat.  That's step one in my decluttering plan.  Even though it's behind closed doors- it's a step. I can do that tomorrow morning while I listen to the news and drink my coffee. 

3-  Laundry is piling up again (clean, not dirty) so I need to get in and fold clothes.  While I am folding and putting away clothes I need to go through my drawers and closet.  Step 2 is that it's time to be ruthless and get rid of things I don't wear and take them to Good Will.  I need to go there this weekend anyway because I am on the hunt for either "Metal" tees or lace gloves (I have an 80's party to go to in a couple of weeks) so I might as well take some stuff with me.

4- I am WAY behind on my magazines.  I am sure I mentioned it before but what I do is take my magazines, go through them and pull out the articles I want to read, recipes I want to keep and pictures and phrases for my vision boards and get rid of the rest.  Those articles I keep in folders and before I had my Nook I took them to my doctor's appointments and any place I might have to wait and read them there.  It's perfect for when you don't know if you will have a few minutes or a longer length of time.  I read my Entertainment Weekly every week and I keep my Real Simple magazines in tact but I also have subscriptions to O Magazine and Bon Appetite and I need to go through them as well as the ones my mom has passed on.  Depending on the magazines I am sorting through I can fill a folder by getting through 10-12 magazines.  Right now I have two baskets full so I need to get caught up on that and then start doing this while I watch TV on the day that they come in the door.  That is step 3 of the decluttering plan. 

If I can get all of these things done it will have been an incredibly productive weekend.  Best of all I should have time to nap in there a time or two and the laundry and mags can be done while I am sitting down with ice and a heating pad, taking the pressure off of my back, which has been giving me fits.  Interestingly enough- having had the cortisone injections in my hips and knees has relieved a lot of that pain but it has pinpointed my lower back as the source of a lot more.  We  had thought that maybe the back hurt because the pain was radiating from my hips- we were wrong.  I figure that if I can get caught up on this stuff this weekend and still be able to work on lessening the pain- it will be a win.  

I should note that it is supposed to rain a lot this weekend so we are sort of "stuck inside."  Though we would much rather be taking the pups out to the Riverwalk - that area is still flooded and they won't go out in the rain anyway so we will be celebrating the change of seasons by getting the house ready for summer. 

Thursday, March 17, 2011

The Social Security Administration and Compassionate Allowances

Yesterday the Arthritis Foundation addressed the Social Security Administration in an effort to have RA added to the Compassionate Allowances list.  Below is the email that I sent to lend my voice to this cause and I urge you to send  your own email to: Compassionate.Allowances@ssa.gov

Good Morning,

Yesterday you heard testimony from Dr. Gall regarding the debilitating nature of Rheumatoid Arthritis in this country. I am writing today to add my own voice to his testimony.

I am 43 years old. I began working and received my first paycheck when I was 13. I am old enough to remember when conventional wisdom was that you would work for 25 or so years with a company and retire. We all know that in this day and age, and in the current economy that is no longer an option for so many of us.

Almost 6 years ago I was first diagnosed with Rheumatoid Arthritis. At that time I was married, raising a teenager, attending college and working two full time jobs. Since the time my symptoms began showing themselves I have had to drastically scale back my life. Though I am still married and the teenager is now an adult, I am no longer able to carry two full time jobs and college. In fact, I have additionally been diagnosed with Fibromyalgia and I am "down to" one full time position and often have to modify my work to accommodate my illness. The chronic pain and constant exhaustion make it difficult to be as 100% hands-on as I was even as much as five years ago.

I never imagined that in my early forties I would be in pain every day, have no energy, have to rely on mobility aids and have permanent damage to my hands, feet, hips and back.

I never thought that, in my early forties, I would be truly afraid that I would be unable to work long before traditional retirement age because of an incurable autoimmune disease.

I never thought that I would be afraid that when I could no longer work it would take so long to go through the "system" and receive benefits that I have been contributing into for over 30 years that I could potentially become destitute between the time that I could no longer work and when the application and approval process are complete.

The age of the internet has opened up a world of shared information and the information coming in from people who have gone through and are in the middle of the disability process who have the "invisible" illnesses that I share is incredibly disheartening. Lost homes, inability to pay their utilities, lost health insurance due to inability to afford the premiums which in turn means that they are unable to afford medications; these are terrifying scenarios to someone who has worked hard my entire life. The only option beyond this is continuing to work as long as the employer will allow causing far more pain and damage than is necessary unless there is reform in the system.

I also wanted to note that our medications are beyond expensive. One medication that I am currently on including the administration of the infusion is over $3000.00 a month. This does not include the five other medications that I take on a daily basis just to maintain the ability to be productive. I give thanks every day that I have the health insurance that I have through my employer because if I were not working and did not have that insurance and that job- I would not be able to afford one medication much less the current combination.

I urge you to add Rheumatoid Arthritis and other debilitating autoimmune diseases to your Compassionate Allowances group and I thank you for your time.

Julie E. Faulds

Tuesday, March 15, 2011

Would "Sister Wives" be helpful for Chronically Ill patients?

**First I want to say that in the beginning I was NOT going to watch this show.  I felt it was another "Jon and Kate" situation where the parents were going to be living off the kids once filming starts and I was NOT going to support that.  I caught them on the Today Show and on Oprah and the difference is that they actually work and support their family- so I gave it a shot and it is actually very interesting. **

Now- I am not endorsing polygamy, I realize that it's illegal and in many cases historically it has involved perverted men essentially "marrying" children a la Warren Jeffs and the compound in Texas.   That said- if you have not seen the Brown family, these are all consenting adults.  Only the first wife was 19 when they married and he was 21.  The rest were all adults and didn't make their decision lightly nor was it made for them.  When I see this family, I can't help but think that they got something right. 

Years ago, a bunch of us were joking about moving out to the middle of nowhere and creating a commune.  That's what this family reminds me of- a commune.  Here's the thing- other than the whole "sharing the husband" thing, which they have down to a science (he spends X number of nights alone with each of them- according to Meri-wife #1- "there's no weird stuff going on") they each have separate "apartments" within the house and a common area.  Two of the wives work outside the home, as does the husband, one wife is a SAHM and it looks like the new wife will join her once they do the addition that allows her and her children to move in as they are currently in a house down the street.  Now that you have the background- where am I going with this? 

When one becomes chronically ill, one of the most important things you can have is a strong support system.  These women have created that for one another.  They have created a family where they really are more like sisters that they have been able to choose.  They each have their strengths and shore one another up where they are weak.  They work together to raise the children, to do the housework, to make the home run smoothly and they have wonderful communication.  It's like having live in best friends. 

When you become chronically ill, some things have to fall to the wayside.  You just don't have the energy or strength to be "superman/superwoman".   Usually the first thing to go are the things you dislike the most.  For me- that is housework.  I will be 100% honest and say that I have NEVER been good about housekeeping and it has only gotten worse since I developed RA and Fibro.  If I could afford to employ a housekeeper, that would happen ASAP, but instead I do what I can, when I can.  In the Brown Family- one of the wives decided when she was a child that her ambition was to be a stay at home mom.  She aspires to take care of the home.  I can't tell you how much having someone like that in MY home would be helpful.  I can't think of any woman that works outside the home and raises children who could NOT use a "wife" like that at home.  No matter how helpful our husbands are- we still try to do it all.  Having someone who wanted to take that off of our hands would be miraculous.

Do I think I could ever be a part of a polygamist family?  Probably not.  I love my husband dearly but neither of us is remotely as low key as the adults in the Brown family and I think you would have to have that "go with the flow" attitude to do it right.  Would I like to have that kind of dynamic that these women have created?  Absolutely.  They work together within their home to be able to do it all.  They talk through their issues, they support one another, they have open and honest communication, they work to their strengths and have more than one someone to count on to pick up the pieces where they might fall.  When one is ill or indisposed, the others step in seamlessly to do what needs to be done.  It's almost a utopian society within their not so little home. If there weren't the horrific compounds out there using polygamy as an "excuse" for child abuse- and if every plural family worked the way this one works- I could support this almost as much as I do gay marriage.    So while I may not necessarily agree with plural marriage-  I can see how it would appeal and how it would be very helpful for those of us who have to come to terms with the fact that we can't do everything any longer.  One thing I will say about this show and this family- it definitely makes me think. 

Monday, March 14, 2011

More Happy Tears

I am going to start thinking of Monday mornings as "Bawl Your Head Off Monday."  I just watched episode 2 of Secret Millionaire on ABC featuring millionaire Marc Paskin.  Marc is a successful real estate investor from San Diego who was dropped down in Detriot's inner city.  ABC did a better job of rounding up Marc's chosen groups than I could:

61-year-old Paskin, a multi-millionaire spent six days living on just $50. That's the equivalent of one week on Detroit's welfare assistance for a single man over 55.
He moves into a typical, run down, one-bedroom house on the east side of Detroit. The east side is known for being overrun with drugs, crime and gangs.  Paskin finds three worthy charities to donate his time and money to.

The first is The MAN Network. MAN stands for Maintaining a Neighborhood. The organization strives to bring safety to neighborhoods and provide community building activities.

The next is Young Detroit Builders. The organization provides young adults ages 18-24 the opportunity to learn how to build and remodel homes. They are dedicated to helping Detroit's disadvantaged youth learn job and life skills. They have rebuilt 800 homes in the past 17 years.

Paskin spent a day volunteering with Really Living, a corporation that offers uninsured patients free transportation to their medical appointments.

For more on the charities visit:

The MAN Network: http://themannetwork.net/

Young Detroit Builders: http://www.youngdetroitbuilders.com/

Really Living: http://www.reallylivingcorp.org/index.html

For ways to get involved in your community: http://abc.go.com/shows/secret-millionaire/get-involved
They didn't mention the young lady that Marc helped out.  This woman who is living on dialysis, also has a daughter who was born at 27 weeks and immediately had to have a 6 hour colostomy surgery.  It was during her daughter's initial health scare that the young lady's transplanted kidney failed and she began a lifetime of dialysis.  Marc gave her $20,000 and the young woman is using it to go back to school to build a better life for her daughter.  The interesting thing is that they say that Marc's goal now is to give it all away before he dies. 

The next show I am watching this morning is on Lifetime and is called "Coming Home".  Coming Home features real military men and women and their families.  It brings home military members to their families in a surprise reunion.  One example is that of a young girl who was having violin concert at school and their brought her Dad home and surprised her at her concert.  Another family has a 5 month old baby girl and the father had never met her because he was deployed when his wife was 4 months pregnant.   What I like about this program is that it serves as a reminder that there is not just our military men and women who are sacrificing when they are deployed- their families make a supreme sacrifice as well. 

Needless to say- my eyes haven't been dry all morning but in a good way. 

Of course, last week I mentioned that this really inpires me.  Each espisode of EMHE and Secret Millionaire has made me want to do SOMETHING for those organizations.  I realized that what I need to do is look closer to home and find something in my own area that means a lot to me to help out with.  Marc Paskin said something as he was ready to leave Detroit that really ties in with last week's post and so I want to leave you with it: 
"Not everybody has money to give away but everyone can give their time and their love.  It’s time to give back."
                                                         -Marc Paskin

Saturday, March 12, 2011

Stress and Serenity

Only a quick post this morning as I have my little "side job" this morning.  I have been fortunate enough to, for the last year or so, get to proctor the Praxis exam half a dozen times a year.  Having sat for a national exam I know how nervous these folks are and if I can help them ease into it and make sure there are no distractions- all the better. 

So the side effects of the cortisone injections is a throbbing ache in the injected site.  When I get home this afternoon I will alternatively ice and heat the site.  Based on last week's injection I should be A-okay by Monday.  Already I am feeling a bit of relief through the ache- the pain is different- which is lovely. 

This has been an interesting week at work.  A couple of things that happened that, if I let it, could have caused me a very large amount of stress.  I did a lot of deep breathing- A LOT of deep breathing and as much as I could let it roll off.  I know darned good and well that in my life, stress can set off a flare faster than I can blink.  It's taking all of the tips and tricks that I know to keep the stress away but I can power through. 
I have discovered that I can let myself get angry but it won't do any good so there is no point.  Instead- I can take a cue from the Serenity Prayer:  I can accept the things I cannot change and have the courage to change the things I can. More importantly- I can be grateful that I have the wisdom to know the difference.  There was a day that I would tilt at windmills- but that day is gone and that brings me no small measure of peace. 

Friday, March 11, 2011


Good Morning!  Well I got all "lubed up" yesterday.  More cortisone injections.  I like to think of them as WD-40 for my joints.  The injection sites are throbbing this morning but since a minor flare is a "side effect" of the injections, I am cool with it.  Here's the thing- not only will it help with the flare I am currently recovering from but also it should make it easier for me to travel at the end of the month.  We have our Annual Meeting in Florida and last year it just kicked my butt.  The meeting is a mix of a standard trade show, learning sessions and networking.  We fly in to Orlando and from the time we land until the time we are wheels up again it is go, go, go.  Last year after spending Tuesday, Wednesday and Thursday on my feet, Thursday night I ended up buying flip flops because my feet would no longer fit in my shoes.  By the time I flew home I was wearing spa socks and yoga pants and moving like I was 93 instead of 42.  If the cortisone injections help stave off some of that- the injections were well worth it.  I have to say- the knees were FAR more painful than hips.  Probably because I have so much extra padding in the hips- but whatever.  I am planning ahead this year, taking my cane and thermacare and some tiger balm and loose clothes and sandals.  This trip will not defeat me this year! 

On a side note- the injections were all in my bursa (bursai? What is the plural of bursa?) and were related more to my RA than my fibro but the inflammation that they aim to subside by the injections definitely give fuel to the fibro fire. 

Today I am feeling grateful for my schedule and "comp" time.  Thankfully, I work enough hours during our rush period and during the week that I am able to take the majority of my Fridays off at least half the day.  That means that today, when I am tired and sore, I can go in and run my meeting and then come back home and sleep the pain away. 

Here's hoping you all have a pain free weekend- and don't forget to set your clocks forward on Saturday night! It's that time of year again that we Spring Forward! 

Thursday, March 10, 2011

It's time for another Gratitude Round-up

Every once in a while I need to get down in writing the things that are making me feel grateful.  I use my commute most days to try and get myself focused on them but phone calls (Hands-free of course), my to-do list and other things get in my way.  When I am able to spend that time giving thanks, it keeps me centered and calm.  I don't even get my usual minor case of road rage if I am concentrating on the blessings in my life.  Today I am heading to see the Rheumy first thing so I will be working through what I need to make sure I get done there since this will be my last visit with her before she goes out on maternity leave.  So here we go with another list! 

  • Those morning phone calls:  My sister calls me a lot of mornings.  We are usually commuting at the same time, though my commute is a lot shorter than hers.  We don't talk about anything earth shattering, we just visit and if we miss one another it's okay- but it keeps us close when we are geographically so far apart.
  • Cortisone:  I had a cortisone injection in my right knee last Friday.  I had gone in for my usual quarterly appointment with the rheumatologist and I was mid-flare.  Everything from the waist down hurt.  She started with my right knee to see how I would tolerate it, and to see if the hip and ankle pain were just radiating from the knee.  Well- almost a week later that knee and ankle feel terrific (comparitively) so back I go today for the other knee and possibly the hips.  Either way I will be thankful for some relief. 
  • Good timing/Good people:  Hubby had car trouble this past weekend.  It ended up being an almost $500.00 repair bill.  I am thankful for two things- first that this is my pay week so we can have the repair done and his car back safely on the road and second that the garage allowed us to post date the check for the repair till Friday.  We had planned on just picking it up on payday but they said he could have it back so we were thrilled.  Especially since today is the day that I have to be in Louisville when he has to be at work and I don't get out of work till 7pm. We don't have a LOT of money but we have enough- and that's a good feeling. 
  • Being in a place that we can spoil ourselves.   We also, while we were commuting together this week,  noted that we are awfully "spoiled" these days to have two cars.  We haven't had separate cars in a lot of years.  Heck- for at least 10 years we didn't have a car at all.  We relied on cabs, public transportation and our feet to get us where we need to go.  Then we shared a car for several years and finally, after moving out here, we got a second car.  It has been a lifesaver for us and very freeing since we are in an area that there is very little public transportation options and you need a car to go almost everywhere.   
So that's where my head is this morning.  Now it's time to get ready to get ready for work.  I hope you all have a pain free day!

Monday, March 7, 2011

Feeling Insignificant- in a good way

Last night I watched the show Secret Millionaire on ABC for the first time.  Last season I was tied up in a different show and just plain forgot about it even though the premise intrigued me.  The basic premise is that  ABC takes a millionaire and plops them down in an apartment in a disadvantaged area in a new city.  They give them $40.00 to live on for the week and have them go out and find places to volunteer their time.  If asked why they are being followed by a film crew, they are to say that they are doing a documentary on volunteerism.  At the end of the show, they go back to each place and gift them with a combined total of $100,000 of their own money. 

Dani Johnson- last night's millionaire- was sent to Knoxville, TN.  Though Knoxville has a lot of "big money" businesses and a university, there is another side of Knoxville that is just sad.  One of the things that struck me the most was an abandoned high school.  It looked so sad with windows knocked out and grass overgrowing the playground.  When Dani asked one of the local residents she was told that there was supposed to be a demolition and a new building put there but that it had been over a year since that was approved and nothing had happened.  Worse- that there were people living in that building.  That just hurt my heart.  I just cannot imagine what it must be like to have to make the decision to live in an abandoned building like that. 

On her journey, Dani found three volunteer opportunities:

First to receive a donation ($40,000) was the Joy of Music School.  This school provides free music lesson, including instruments, to inner-city children.  This school constantly has a waiting list.  These kids, who otherwise may never have gotten out of their neighborhoods are not only learning the joy that music brings to your life but many of them have embraced it to the point that they are earning scholarships to colleges across the country. 

The second donation ($30,000) was a small organization called Special Spaces.  Special Spaces goes to the homes of children who are dealing with life threatening illnesses and gives them dream bedrooms.  They are creating a sanctuary for children who are fighting so hard to stay alive.  Funded completely by donations and volunteers, Special Spaces has completed 86 rooms since 2004.  During Dani's 2 days with Special Spaces they created a room for a little 5 year old girl named Daisy who is fighting leukemia.  The room that they completed was fit for a princess and Daisy was thrilled.  Though it's not an organization, Dani went back to Daisy's home and gave her parents $10,000 to go toward Daisy's medical bills. 

The final donation ($20,000) went to The Love Kitchen.  The Love Kitchen is run by 82 year old twins Helen and Ellen.  The twins founded The Love Kitchen in 1986, providing meals, clothing and love to both drop in's to their location but also to homebound folks.  The first week they were open they provided 22 meals.  Now they are up to over 2000 a week!  The thing that really struck me about Helen and Ellen was not just their age and devotion to "their" people, but that when gifted with their donation they said "You dont know how many people this can feed!  This renews my spirit and makes me know I can do MORE!". 

Watching this show, I cannot tell you how many times I cried.  Now- we all know that I cry every week at Extreme Makeover Home Edition, but this was so much more.  Each of these organizations made the tears just flow as Dani was learning about them and the reveal portion, well, I just blubbered.  During EMHE I cry at the family's story and when they get their new home which will change their lives.  During this show, I could not help but cry not for the people that are being helped but for the devotion and passion of these normal people who do not have a lot themselves but are doing everything that they can to help others.  They don't want fame, they don't want thanks, they just want to do what they can to make their community a better place to live.  All of them were so grateful just for the help that Dani provided by walking in off the street to volunteer and the donation at the end just blew them away.  This show is not just changing the life of a family but will help hundreds of people for a long time. 

After I watched the show I had two things on my mind.  First, no matter how much I try to live my life from a positive place, no matter what very small volunteer efforts I have made, they are insignificant compared to what these folks are doing.  Second, of course, was "What more can I do?"  I often think that I would like to help when I hear about different organizations but I talk myself out of it when I realize that with my crazy schedule and the unpredictability of my illness I can't commit to a permanent day and that any donations would be small.  Seeing the people behind these organizations begs me to ask "What if these folks used the same excuses that I give myself?"  So very many people have had their lives changed and if these folks did not do what they do, that would be missing from our world.  Whether they realize it or not, these people are heros.  Not the millionaires who are giving them money, the people who are in the trenches every single day making a difference.  Being grateful for my life and my blessings is one thing-paying it forward would be the icing on the cake. 

So now I ask you- do you volunteer your time or your money?  What do you do?   How did you find a cause that is near and dear to your heart?  I would love to hear how you volunteer and any ideas that you have that can be done with little to no money.  Currently I administer the website for my father's churches, I collect coupons for our overseas troops and their families, I am doing two Arthritis Walks (May in Evansville, IN and September in Louisville) and recently joined the Walk Committee in Louisville, but I want to do more.  I would love to hear your ideas or about terrific programs in your community.

Thursday, March 3, 2011

It's a double flare- how'd I get so lucky?

Well, we tapered me off the prednisone and now I am dealing with a double flare.  What's a double flare you ask?  It means that both the RA and the Fibro are flaring.  If you have two separate illnesses; believe me, you can tell the difference.  The RA is affecting my hips, knees, ankles and feet.  The pain started with extreme pressure in my knees (as if I really need to "crack" them) though when I do crack them, I get one moment of "Ahhhhhh, relief" and no sooner than I can think that, it's back.  It ranges from there to a burning in the ankles, a cramping sensation in my toes to stabbing in the hips. The fibro is centered in my back for the most part.  It started in the lower part- which always, always hurts when my hips hurt but has spread all the way to the shoulders.  It's tight enough that I can't stand straight, and leaning back on it when sitting feels like it's been hit with a baseball bat.  When I lean forward, my ribs hurt.  When I try to straighten  up, the pain radiates all the way down to the feet.  Worst of all, the more I use my body, the more it hurts so by the end of the day even my combo of nigth time muscle relaxers and pain meds don't touch it.  The pain wears me out and then it keeps me up.  It's a real jerk that way. 

While I am at work, I have been using my cane.  I hate my cane.  While my colleagues in the store know of my illness, I don't publicize it around campus and having to use my cane shouts it loud and clear.  I am not weak.  I work my tail off on a regular basis.  The last thing I want is to be seen as "disabled."  When I am truly disabled, I will stop working.  Until then, I just don't want that picture in anyone's mind.  What I will say about the cane is that it gives me stability.  Without it, there is more than a chance of my falling.  When I am at home I use furniture, the walls, the hand rail on the stairs, but out in the open- the cane is my only source of stability so whether I like it or not, I have to use it. 

There are usually only two ways for me to deal with a flare.  I can call my doc and she will give me prednisone (which we JUST took me off of) or I can ride it out.  This time I get a combo of the two.  I have to ride it out until Friday, at which time I have a regularly scheduled appointment with my doctor.  I don't know what she will do about the flare- but I do know that this just cements it for me that the Orencia is not doing great things for me. 

Now for the gratitude portion of this post.  Having these flares serve as a reminder for me how lucky I have been to not have had a really bad flare in a long time.  Yes, I live with pain every day, but it's the dull, throbbing, achy kind of pain.  While I can live with this flare for a couple of weeks (this is week 2), I don't know where my state of mind would be if I had to live with this on a regular basis.  I can really be grateful that I don't have to deal with this all of the time. 

I don't know what this will bring- except maybe a weekend of rest and trying to relax.  That sounds great but it's actually a little stressful.  The house is a disaster and I really need to get some work done.  I hope that I can get a little done- even if from a sitting position over the weekend but if not, I guess it will keep.  Here's wishing you a pain free weekend! 

Wednesday, March 2, 2011

It's time to walk again!

Well, it's that time again!  Walk season is in full motion.  This year, I am walking in two walks again, on the west side of the state in my parents town in May and  here in Louisville in September.  The walks are very important to me.  Not only do we raise money that is so needed for research and programs through the Arthritis Foundation but one thing that I learned from doing the Avon Walks is that when you are out there just driving around or walking around and you see that sea of people and the banners and all of the hoopla that goes with it- it catches your eye.  If we can get the word out in public that "Arthritis is not just for old people" then it will make a difference.

This year I decided to join the Walk Committee for the Louisville walk.  Last night was my first meeting and I have to admit that I was nervous going in there.  I don't know why but it seems that since I made so many life changes, I am a little more- no, a lot more, withdrawn and much less outgoing so joining this committee was a little scary.  The meeting went well- there are just over a dozen members and they all had good ideas and questions and suggestions.  The focus of this meeting was recruiting teams to walk.  We brainstormed ways to get the word out and how to encourage people to walk for our cause.   There were a lot of good ideas but we are always looking for more.

So I am throwing this out to you.  Have you done a walk for a cause?  How would YOU find teams?  What did you do to raise funds for your walk?  What did you like about your walk experience?  What did you NOT like?  I would love to hear from you.  You can leave a comment here or if you prefer not to publicize your efforts you can email me at ChronicallyPositive@gmail.com .

Here's hoping you have a pain free day!