Tuesday, September 25, 2012

Contemplating a quote and making changes

I have been thinking about this quote for days.  I shared it with a friend and she didn't agree with it but I truly feel that it says a lot about where I am in my life:

"Most people do not realize that as they continue to find things to complain about, they disallow their own physical well-being. Many do not realize that before they were complaining about an aching body or a chronic disease, they were complaining about many other things first. It does not matter if the object of your complaint is about someone you are angry with, behavior in others that you believe is wrong, or something wrong with your own physical body. Complaining is complaining, and it disallows improvement." 

- Esther Hicks, best-selling author and speaker.

  I don't know about you, but I have had (note the past tense) people in my life who did absolutely nothing but complain.  You know those people:

  • Their life sucks
  • Everything bad happens to them
  • They can never catch a break
  • It's too hot/cold/rainy/not enough rain
  • Every headache is a migraine
  • Every migraine (if they truly have them) is a tumor
  • Every cold is pneumonia
  • Every scrape needs stitches
  • They are too fat/skinny/tall/short
  • They aren't pretty enough
  • Their boss does not appreciate them
  • Their spouse does not appreciate them

I could go on forever with their list of what's wrong with their lives- because they do.  

To quote Andy Cohen (@BravoAndy)  "Here's What":  When you are around these people one of two things happens.  Either you fall into the pattern of spending all of your time with them comforting them and telling them how wrong they are OR you fall into the same pattern of complaining about your life too.  Neither of these two things helps your state of mind.  I know that for me, just being around them makes me feel completely drained.   Which is why I have made concerted efforts to remove them from my life.  

That said- I have been guilty a time or two of falling into this trap.  Not about my life in general because I am well aware that not only do I have a pretty terrific life but a great family and support system as well.  But when it comes to my RA and Fibromyalgia, I have recently found myself backsliding in a big way.  

A few weeks ago I had an appointment with my Rheumy.   At the previous appointment she had tested my RF because she didn't quite believe that they were as high as Seracare had reported and she normally only tests ESR.  I asked her about the results and  she said something to the effect of "despite the fact that you numbers are quite high (they were reported as >600) your disease progress is fairly stable and that's all we can ask.  In fact, I think we can go to 6 mos between appointments and you can always come in if you need me between."  At the time my hips were aching (still are) my constant back issues were flaring, and the fibro in my neck and shoulders was in an upswing.  All I could think, all I could concentrate on was that this is as good as it will ever be again which led to "I don't know if I can deal with this forever."  As the pain of the flare ramped up and then settled back to "normal", every negative thought that ran through my mind fed into another and it started to spread into other areas of my life.  Oh I tried (very hard) not to complain to my family and friends which just served to add another layer of "no one wants to listen to you bitch constantly" self talk on top of the rest.  I pulled away from writing, I spent my online time playing games instead of interacting with people and at home I closed myself off from everyone except my puppies unless I could deflect attention elsewhere.  It was a horrible circle that led me to the point that I just wanted to stay in bed all day and resented the fact that I couldn't.  Finally I woke up one morning and essentially told myself that enough was enough.  I couldn't keep doing that to myself because it was doing far more damage than the actual pain.  I went back and read that quote.  Then I read it again.  Then I read it out loud.  Then I moved on.  If this is my lot in life, okay.  It may not be the life I imagined but you know- I CAN focus on the good things and get through this.  I can accept the pain and fatigue and work with it.  I can still accomplish other things.  I just need to find out what I want to do next, starting with working on my book again and get going.  I can do this.    

Wednesday, September 19, 2012

Waging a battle

Hey Gang- I apologize for the lack of posts. I have been fighting a behind the scenes battle that is making me crazy! Over the past 5+ years that I have been writing this blog, there have been an average of 1-2 attempted spam comments a week. I have a filter set and they are *usually* caught before they clutter up the page where you all read and interact. I get an email for every comment that comes in and in those cases, I generally pop on in the evening and delete the spam with no one being any the wiser. Google/Blogger does a pretty good job of catching them with their filter. For that, I am grateful to Blogger/Google. The only *glitch* is that if I try to mark them spam from my mobile (both my iPhone and iPad) somehow they end up showing up on the page at least for a few minutes. What is really frustrating is that at times YOUR comments end up in the spam folder and in my rush to get rid of the actual spam, I have inadvertently deleted some of your comments too.

I hate spam. I HATE spam. I HATE SPAM! I hope that makes it clear to the spammers how I feel about their stupid posts.

I don't know what has happened of late, but for the past few weeks, the spam comments have kicked up a notch. I can almost time it. Just about the time I get to work in the morning, 20-30 spam comments hit my email inbox. Throughout the work day it slows down but several more come in. Those all have to sit and wait until I get home to take care of them- but the same thing that happens occasionally to my comment box happens to my email- I have inadvertently deleted important emails that have gotten caught between the barrage of emails notifying me of new comments and have been deleted. In the evening- usually after I go to bed, the same thing happens again. I get pinged for 20-30 new email for comments- all of them spam.

This whole thing is making me increasingly unproductive and more importantly, angry. Angry is not the emotion that I need to feel when I am working toward a positive and gratitude filled life.

I don't know what I can do about this. I don't want to turn off my emails for comment notifications because I don't want to miss your comments! I am to the point that I am considering moving my blog over to a new platform to try and get away from this. On the other hand, I feel loyal to Blogger because they have been very good to me over the years and they do try to ensure that the spam doesn't get through. Needless to say- the word of the day is "Frustration."

How about you, my fellow bloggers? Are you seeing a surge of spam as well? If you are on a different platform- which do you use and what do you like/dislike about it? If you are with Blogger- do you have any tips?

Thanks for baring with me while I work through this!


Monday, September 10, 2012

What can I learn from a hard lesson?

I am struggling a bit this morning.  Yesterday was a lovely day.  My hubby and I, both big fans of football in general and the New England Patriots specifically, drove down to Nashville to see the season opener of our Pats against the Tennessee Titans. I bought the tickets a few months ago and what was left after season ticket holders, corporate folks and what-not were nosebleed seats.  I thought it would be okay.   I did my homework.  Our seats were up high but there was an elevator.  Each floor has food, restrooms etc.  While the parking lot is reserved for season ticket holders only (really!) there was supposed to be public parking nearby.

Well- the information was correct- sort of.  Nearby parking is subjective.  We got there early and still ended up over a mile from the stadium and up and over the Shelby Street Pedestrian Bridge. When we got to the field, while there was indeed an elevator, there was also another estimated 50 very steep stairs to our seats.  I managed it make it up the first time, when we went in early to scout our seats, then back down to grab a bite (literally- the brat was YUKKY!), go to the restroom, get drinks and then back up again to the seats.  We sat there for the first half and then made our way back down to the third floor concourse.  Fortunately (for me) hubby was starting to feel sunburned and he wasn't crazy about the idea of me doing those stairs again because he could see that my knees and back were giving me trouble so we decided to make our way back across the bridge and find a little place to get some food and watch the rest of the game.  We actually stopped about a quarter of the way up the bridge because there was a perfect view of the jumbotron from there!  We made our way to Past Perfect and had a wonderful lunch (me-crab cakes, him meatloaf if you are ever in Nashville) and watched the rest of the game and then hopped in the car and headed back to Louisville.  After the three hour drive back home, it was hard even getting out of the car.  Everything was hurting.  The 3 hour drive back was just enough time for my muscles and joints to get to the point of protest. I stumbled into the house and gave some loving to the puppies.  Hubby hooked them up to their tie outs and I went outside with them and sat on the bench until they were ready to come back in.  I unhooked them before standing up-giving thanks that they are good babies and wouldn't run off when off their leads- and then stopped for my Flexeril and then took myself up to my bed.

So why am I struggling? I am completely bummed out about how ridiculously easy it was to cause myself so much pain.  I am bummed because I *thought* I was doing well- better than in a long time- and evidently I was wrong.  I am struggling because there has got to be some way to strengthen my muscles without making my joints rebel so that maybe next time I can go to an event and not look at those stairs and fear what will happen the next day.

I need a course of action.  I think the first thing to do is to allow myself to rest today.  Thankfully I had already decided to take the day off before all of this.  Next, I think it's time to go back to yoga class.  Beyond that- I am at a loss.  I think that means it's time for a nap.  Maybe when I wake up I will have more ideas.  We shall see.  

Tuesday, September 4, 2012

30 Things You May Not Know About My Invisible Illness

Next week (September 10-16) is Rest Ministries Invisible Illness Week.  A few years ago, Lisa from Rest Ministries put out the challenge to fill out the following meme.  I took her up on that challenge.  This year, she answered hers again (you can find it here) and then compared the two.  I decided to follow suit.  My 2012 answers are below:

1. The illness I live with is:

Rheumatoid Arthritis and Fibromyalgia
2. I was diagnosed with it in the year:
RA in Augusts, 2005, Fibro in 2008-ish
3. But I had symptoms since:
Early 2005 on all counts
4. The biggest adjustment I’ve had to make is:
Limiting myself in terms of how much I can do in a day.  Chronic fatigue is a very real part of living with both of these illnesses and it's an evil cycle.  The more tired you get, the more pronounced the pain.  Pain in turn saps your energy.  Ten years ago I was go-go-go constantly, now, not so much.  
5. Most people assume:
A LOT of different things but the two biggest are:  A- Rheumatoid Arthritis is just like its very common cousin Osteo-Arthritis.  I cannot tell you how many times I have heard "Oh! I have arthritis in my _____________!  It's not so bad.  You should just___________!"  and B- I have a significant amount of medication related weight gain.  Long term medications like Prednisone and biologics can do that.  People assume that I am "just" getting "fat".  If it were as easy as diet and exercise- years of Weight Watchers would have helped me lose.  
6. The hardest part about mornings are:
Gathering enough energy and flexibility to get ready and go to work.  Most days just drinking coffee and throwing on something comfortable and then making lunch is all I can manage.  Especially since I have to wait for the flexibility in my hands to prep my fruits and veggies and in my knees and hips to get back upstairs to my clothes and such.  
7. My favorite medical TV show is:
I don't watch medical shows but if I see an ad for an interesting episode of Dr. Oz, I will DVR it.  
8. A gadget I couldn’t live without is:
My iPad. It keeps me connected to the world no matter how I am feeling.  When I have the energy I can write and interact, when I am sick I can watch Netflix or a movie.  Lisa answered similarly and she is SO right.  
9. The hardest part about nights are:
Getting comfortable and staying comfortable so that I can sleep a full night.  
10. Each day I take __ pills & vitamins. (No comments, please)
2-3 Tramadol, 2 Neurontin, 3 Flexeril, 1 Lunesta, 2 Tums, and 2 Vitamin E and a multi- so; 13 different pills and vitamins.  Plus my Orencia injections every Sunday.  
11. Regarding alternative treatments I:
I would love to try accupuncture- and my doc is okay with it, but there are no practitioners in my area who are on my health plan.  
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I don't handle pity well.  
13. Regarding working and career:
I never thought I would see the day when I was ready to give up work- EVER, but now I can see that in my not so distant future and it no longer scares me.  
14. People would be surprised to know:
Again, parts of Lisa's answer were perfect so I will borrow on hers:  How much pain I am in and how many parts of my body do not work all that well.  Many people assume because I do what I do, I must not be in that much pain. I am blessed I am not worse, but after 7 years of RA, I have never experienced a day of remission and every day I want to go to bed and stay there, but I never do. My brain is wired to keep on keeping on. 
15. The hardest thing to accept about my new reality has been:
Any limitations.  I am not good at limiting myself in any way and have a tendency to overdo it by just pushing a little further . 
16. Something I never thought I could do with my illness that I did was:
Accept and work with my illness.  When I was first diagnosed I felt like I had been handed a death sentence.  
17. The commercials about my illness:
Make me crazy.  They are completely misleading.  Though medications can help to slow down the illness, everyone in the RA community knows that there is no cure.  Let me repeat that:  There. Is. NO. Cure.  No matter what Phil Mickelson says or what the commercials show some actor doing- you will likely never see me able to walk 18 holes of golf carrying a golf bag or running on a beach.  I am lucky if I am able to bend over and tie my shoes without it taking half of forever to do the task and then get back up.   Also- no matter how well a specific treatment works for one person- it won't work for many more.  I have been through ALL of the DMARDS and most of the biologics.  Methotrexate worked wonders until it started damaging my liver.  Then it was back on the search again to find something that would work again.  
18. Something I really miss doing since I was diagnosed is:
Walk around the Zoo, a museum or any other place where there are stairs or hills without the assistance of a cane.  
19. It was really hard to have to give up:
Pretty much everything that requires that second burst of energy.  Things like, working all day and then going out with my hubby or friends.  After working all day, I just want to curl up and rest.  
20. A new hobby I have taken up since my diagnosis is:
Seek and find games to keep my brain active.  
21. If I could have one day of feeling normal again I would:
I don't like this question.  One thing that I have learned is that we gain a new " normal" and accepting that is a big step in not allowing our illness to consume us.  
22. My illness has taught me:
Gratitude.  I can be grateful for all of the supportive people in my life and all of the things I am still able to do.  
23. Want to know a secret? One thing people say that gets under my skin is:
"You would feel better if you just exercised more."  and "OH- my grandmother had arthritis in her_____"  
24. But I love it when people:
Truly want to learn about RA and Fibro rather than making assumptions about it from what they see on TV.  
25. My favorite motto, scripture, quote that gets me through tough times is:
"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. "  Melody Beattie

26. When someone is diagnosed I’d like to tell them:
Do not listen to someone else's idea of where your illness will lead you.  If I listened to my first Rheumatologist I would be in a wheelchair right this moment.  You can make your own reality.  The important thing is to go through the stages of grief and then decide what you want out of your life and go for it.  Finally- DO NOT let everything you read online affect you.  You will find that some folks allow  their illness to be the only focus in their lives- that does not have to happen to you.  
27. Something that has surprised me about living with an illness is:
How much a positive attitude can affect your illness and how you live with it.  
28. The nicest thing someone did for me when I wasn’t feeling well was:
Built me a "nest" in my bedroom so I didn't have to leave if I didn't feel like it.  
29. I’m involved with Invisible Illness Week because:
It's so important that people understand that just because we look "okay" doesn't mean that we are.  Day to day, hour to hour how we feel can change and the more people that understand that, the more acceptance there will be.  
30. The fact that you read this list makes me feel:
Grateful that you care and would take the time to understand what changes my life has undergone.  

If you are not someone who lives with in Invisible Illness, I welcome any questions that this has raised.  If you ARE someone who lives with one of these illnesses, I encourage you to copy this meme and answer it on your own and then link us to it.  I would love to see your answers!