Viva la Vida?

A very important list for those with Rheumatoid Arthritis, and/or Lupus, and/or Fibromyalgia. (aww hell, for any of the auto-immune arthritic diseases)

How not to Cripple Yourself

1. Do not scrub your bathroom tub tile walls until your hands can no longer hold the brush, and your back appears to be stuck in the bent position for the bottom half.

2. Do not do wash in the middle of the night after a long day.

3. Do not do a lot of writing and errands the next day, forgetting that sometimes the swelling and pain takes a while to set in.

4. DO try to hide the fact that you are crying in frustration and pain for hours and hours.

5. DO take pain killers before you get to that point.

6. DO text/talk with someone who understands and asks the right questions and doesn't say dumb things like 'It will be ok.' (Uncle K, thank you)

7. DO hope/pray/light candles etc that you will get an appointment soon with a new rheumatologist since you really don't like the one you have now.

8. DO go for the yummy! ;-)

9. DO play silly computer or iphones games to distract yourself.

10. DO remember that it won't be ok, but it will get better than right now.

be well...

Thankful Thursday

I have so much to be thankful for, so many blessings.

However, today, I am in pain, tired and weepy.

I hate that.

So, I got up, took my morning meds, got dressed, ate some food and took a vicodin (which I hate to do), drank 2 coffees, drank an orange juice, checked emails, and crackbook, er Facebook, I mean, and now, I am here.

Weepy because I am so blessed. Weepy because I really wish I could ENJOY my blessings more.

Today lupus/rheumatoid arthritis is kicking my ass.

Anyhow...

1. Coffee. Thank you, Juan Valdez. Green Mountain. Keurig.

2. My kids. My life. My heart. My reason.

3. My parents. Dad's 70th Birthday was yesterday. We had a surprise dinner for him on Saturday night, just adults, with my cousin Karol and my sister/bff Kathy. He is their surrogate dad in many ways and they wouldn't miss it for the world. It was nice. Last night was dinner out with the kids and Uncle K, who couldn't make it on Saturday due to work. :-)

4. Reading. Oh how I love to read! AND, I am so blessed that my kids ALL have the reading bug too! YAY!

5. Tonight, Fuzzy will have his Eagle Scout Board of Review... and he should be elected as one with no problem! The big public ceremony will be in May and he and Hammer will have that together!!! I am so proud!

6. Libby. She is snuggled on the floor right next to me as I type. If I get up, she follows, and then reclines near me, wherever I may go. Nothing like a dog for loyalty!

7. The cats! Oh the fun they are having with mylar balloons from dad's birthday floating about! They are so funny!

8. American Idol. I enjoy watching it each season. By extension, I am grateful for music. It is just such a wonderful gift and part of life. It can help lift you up, pump you up, express love, hate, frustration or fun!

9. Piano. I love listening to Pumpkin play piano! She is so gifted... and doesn't get it! LOL

10. My friends. Thank you, your support means the world to me. Truly.

be well...

Wordless Wednesday

Going to cheat today and say...

Happy 70th Birthday, Daddy!!!

Blaze of Glory

Fuzzy finished his Eagle Scout project this weekend. Phew!

Stay tuned tomorrow for a Wordless Wednesday picture that will highlight his efforts!

Warning: Mommy braggin' below! LOL

Fuzzy collected items over a two week period at 3 locations Mon - Fri and 2 locations on Saturdays. (two schools, and police station)

In addition to 2 huge boxes of items, also collected was over $420.

Who is to receive this windfall?

American soldiers in Iraq and Afghanistan.

Regardless of your personal feelings about the political reasons/situations that resulted in our deployment of these soldiers - they are there. At the whim of our government, putting themselves on the line every day. They deserve our support, and if we can give them a little comfort - that too.

The Letter from Home Program at lettersfromhome.org will be the liason between Fuzzy and the soldiers.

I am very proud of my boy.

This Thursday will be his board of review, and barring any unforseen difficulty, Fuzzy will become an Eagle Scout at that time, soon to join Hammer in the formal presentation at the Court of Honor in May. :-)

Fuzzy has had a very rough month too, after just getting over an ear infection in January and injuring his leg/knee with an almost break and tearing the ligments, last week he was sidelined by a bad cold that went straight to bad bronchitis and asthma flare up.

This week he is completing the final Eagle Scout Project details, making up school work, arranging to make up NJ State school testing, and serving our township in Youth Month! The students who volunteer are assigned two counterparts in the municipal government. One is a township employee, the other is a member of the Mayor and Council. Very cool opportunity. Fuzzy and Pumpkin are both participating this year!

Tonight is a meeting of the Planning Board and Fuzzy will be attending.

My youngest son and middle child is maturing into a fine young man.

I will tell myself that over and over as he gives me that teenaged rolled eyes face and says 'I knowwwww' everytime I try to remind him of something.

Sigh.

be well...

Thankful Thursday

How did I do three entries last week and miss Thankful Thursday?

A good question, for which, I have no answer. :::hanging head:::

:::perks up:::

But, I'm baaaaaaaack!

1. Coffee. Oh yes... yum.

2. Asthma meds. For Fuzzy. Very thankful indeed, because my son would not be able to breathe and might be one of thousands of children each year who die in asthma related deaths, usually because they are not being treated for it. (just one shameful aspect of our stupid healthcare system)

3. My husband. I have been going through a particularly difficult time of late for a variety of reasons that I am not going to recount here and now. Suffice it to say that much of it is relating to coping (or not) with chronic illness/pain. ALSO, suffice it to say that I have been, at times, difficult to deal with. I know, I know, hard to believe (:::snicker:::) but true. Hubby has been WONDERFUL and patient.

Except for the one lapse where a smart ass comment sent me careening out of the house in the truck, in my jammies, to McD's, but I won't hold that against him. Or mention it again. I don't think. :::shrug:::

4. Uncle K. He won't read this as he is computer deficient, but one of my kids will probably tell him, THANK YOU for being a good friend.

5. My parents, as always, for all their help.

6. My kids. The reason I put up their picture yesterday for my Wordless Wednesday post is because they are MY LIFE. MY HEART.

7. Our quirky humor and family life.

OMG, you have to hear this... too funny. So, Pumpkin Muffin was being told this joke that had to do all this math. She got each and every answer right and quickly, then at the end she had to 'QUICK, name a vegetable!'

Her answer: Banana!

Yep, that's my Distiguished Honor Student! Just brings a tear to your eye... as you realize our future is doomed!!! LOL

8. My friend Donna, a childhood friend, that I have reconnected with on Facebook! After many email conversations, we are getting together for coffee tomorrow! YAY! :-)

9. Books. This week I have read, Kalayna Price 'Twice Dead', Jane Austen 'Sense and Sensibility', Stephen Coonts 'The Disciple' and I am reading Mark Henry 'Battle of the Network Zombies' (for free on kindle this month!). The latter has had me laughing out loud so hard, I had tears rolling from my eyes! (A warning though, the book has graphic language, violence and sex - all done hilariously, but it wouldn't be everyone's cup of tea!)

10. American Idol! Not sure who is my absolute fave yet, but I am enjoying it!

Okay... time to go! Pumpkin Muffin will be walking in the door any second and will demand all my attention to discuss her day prior to starting homework!

be well...

Wordless Wednesday

Wordless Wednesday!

Daughters

Pumpkin can be a force of nature.

Sometimes she just does not understand why the world will not bend to her will.

Today, it is her honors pre-algebra that is giving her fits. It isn't that she can't understand or learn what is required; she just doesn't think that she needs this particular knowledge at all or the way her teacher wants her to learn it and she wants the math curriculum to be changed.

NOW.

Pumpkin also is angry that she has her period again. She yelled earlier 'Who's stupid design idea was it that we get this thing for YEARS before we need it and for YEARS after we need it?'

As a peri-menopausal woman of 44, I agree wholeheartedly, but that isn't where I was going with this post. LOL

Although tempted to just shake my head at Pumpkin's stubborness and blow it off, maybe, just maybe, her stubborn unacceptance of these and many other inconveniences/occurences in her life will serve her well.

Maybe far better than my own quiet, calm, acceptance that was part of my personality growing up.

I guess only time will tell, and I am in no rush to find out. There is plenty of time for reflection on it all years from now when she is an adult and I am in a rocking chair, maybe with a few grandkids nearby.

And, I am enjoying the show too much to wish it away too quickly.

be well...

Tik Tok

Tempus fugit. Time flies. Youth is wasted on the young.

All so true.

But, you don't really get it until you are of a certain age.

I remember my mom telling me all the time when I was a kid and a teen, that each year that passes gets faster and faster. I thought that was the most ridiculous statement I ever heard! A year is a year! Period. 365 days.

Somewhere in my mid-thirties I started to get it. Now, I know it is true.

So, what to do? How do live life to its fullest, to the utmost of your ability when you are saddled with chronic illness that impedes it?

How do you do it when the mind and heart is willing but the flesh is too weak, too painful, too impaired?

How do you not become endlessly frustrated? Like the Greek legend of Sisyphus, pushing the gigantic rock up the hill and having it fall back down on you crushing you for all eternity OVER and OVER again?

How?

Oh. Were you expecting me to have some wise and wonderful answer to give? Some glib answer, or pollyanna-ish retort saying 'don't worry, be happy'?

Because if you were expecting that of me, hoping to read that today, you are in the wrong place.

Nope. I don't know how not to be frustrated because I am. I am frustrated. I am mad. I AM Sisyphus. I have good days, but know they will only be followed by bad eventually. I have bad days, knowing that the good will come too.

It is a roller coaster as chronic disease always is and I am always either on the hill ticking up to a high or crashing down to a new low.

It is very similar to dealing with death/grief and the stages of it. Anger, denial, bargaining, and acceptance, over and over and over.

There are days I want to scream, wail and keen, 'MAKE IT STOP, LET ME OFF'. Like now. Like today.

I wish that it could be different. I keep hoping for the next great drug to try that may be a magic wand, but truly, no magic wand will ever exist. At least not in my lifetime. The drugs will work and then they won't. There is always hope though, and I do cling to that. I have to do so. The alternative is less pleasant.

I see how easy it would be to spiral into a deep and lasting depression. I really do. The darkness is always there. Just nipping at the heels of the light.

I am in email loop with a group of women some of whom have been dealing with this disease for close to 30 years. Most of them are in the 60's, some in their 50's and one in her 70's, but they all have the same frustrations and maybe some more wisdom. We share each and every day about our lives, and our disease, and our coping or lack there of, and we know that no one else really 'get it' except each other. We cling to that. We have to because we need each other.

I haven't shared with my Loopies (our name for ourselves) my latest crash on the coaster. I don't know why. They will read this blog post and they will know it happened and maybe I'll be ready to talk about it soon.

I am not ready now. I want to get off the coaster.

I want the life that I thought I would have by now. I want the years to slow down because I will never be able to fit in all the things I want to do before I die. I want to take care of my parents, physically and monetarily and emotionally, instead of them taking care of me.

I want the ride to stop.

But it won't. Sigh.

Here's to hoping that soon I start to hear that ticking sound. You know the one I mean? The ticking sound that the roller coaster makes as it starts to pull your car to the top again.

be well...

Thankful Thursday

1. I am thankful to be back on my blog!

2. Thankful that Fuzzy seems to have not broken his leg/knee in his injury yesterday, even if we are cautiously treating it as such.

3. Coffee. Coffee, coffee, coffee.

4. Thankful that my recent head cold/ear infection seems to have resolved itself quickly and on its own.

5. Thankful that at Pumpkin's 13th birthday party hotel sleepover I was able to get 4 hours of sleep. The girls got 2. lol And, very thankful that we got a reduced room rate and the adjoining room free, including breakfast.

6. Thankful that both my parents are alive and relatively healthy, and able to give me help and support with the house and the kids. I don't know how I would ever manage without them.

7. Thankful that both my parents are also my friends. We have fun together and enjoy being together as a family and even just going out as two couples. I am very blessed.

8. Thankful for all the silly things between my hubby and myself that make me laugh. It is so true that just laughing together or with the kids can be full of healing/soothing energy and it helps me cope.

9. That Fuzzy will be doing his Eagle Scout project soon over two weekends, and he and Hammer will be able to have their Court of Honor together in May! YAY!

10. Thankful for friends that in person and online make my life better. The support, love and consideration helps me cope. Coping can sometimes mean whining, complaining, being cranky and sad. Sometimes it means laughing, sharing and hugging. It's great to have pals to share the good and the bad.

11. Thankful for Facebook. Mindless games help me cope with pain and stress. Reconnecting and staying connected with old friends and new so easily is just a wonderful blessing. We are so lucky for technology that aids us in this way. Yes, you have to wary and set your security settings well and all, but it is worth the time and effort!

12. Thankful that Libby is moving better with her arthritis now that we are giving her buffered aspirin twice a day. :-) Thankful that she and the cats give us so much joy.

Well, that is it for today...

be well...