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...

Surrender

I have my own version of Fantasy Island.

I am on a gorgeous tropical island. There is no Tatoo, just me screaming to the heavens, 'Da pain, Da pain!'

With that, a shirtless Wolverine (Hugh Jackman, for the uninitiated in comic based movies) arrives at my side, waves his beefcake arms and...

POOF!

The pain disappears, I return to my pre-diseases self (lose near about 80 lbs and some wrinkles), turn to my Hubby and kids laughing, and we head to the beach to the live happily ever after.

Yeah. NOT LIKELY TO HAPPEN.

So, instead, I realize today that yes, after suffering with this nightmare flare for the last week and a half (although it has been building longer) I will give in and go for the prednisone taper.

Surrender.

I hate taking the vicodin but I have been and you know its bad when doubling up ain't cutting it. That was always the benchmark that my original rheumy recommended.

For those who don't like TMI, avert your eyes now, for the brave, stay for a glimpse more.

It has been so bad that I have been avoiding washing my hair. Today, I suffered thru it the first time since Sunday. It was awful. Elbows screaming while shampooing and rinsing and conditioning. Feet hurting from the tension of clinging to my balance.

Thank heavens I am blond and sparse in the hair department. No leg shaving happening this week either. I could go for about 3 weeks before anyone would ever notice. BUT, I know.

Usually nothing stops me from shaving the 15 stubbly hairs under my arm, because Hubby HATES hair. It's a thing with him. Actually gags when they show the girls on Survivor with underarm hair. I laugh at him. Anyhow, I always, always, always do that shave - unless it is in the midst of the flare from hell.

Yep. No shaving the pits today. Bending the elbows more than I had to do for the hair? No way. Holding that small handle in my sore hands? Nah uh. Not gonna happen.

Yep. Time to surrender.

Thankfully, I have the prednisone in the house. Will probably do 60-40-30-20-10 -5mgs. I won't sleep the first night because of the jitters. Second night, I may get some winks of sleep but it will be fitful and full of nightmares. By 24 hours in I will become voraciously hungry. And, thirsty which means lots of potty trips. Ugh.

BUT, but about day 3 I will start to realize... wow, my joints are not as sore and I am able to move better and with less pain.

Yay.

New rheumy thinks this is more Lupus and Fibro than RA. Old rheumy thought more RA, maybe lupus, probably Fibro too.

I think it all SUCKS.

Surrender.

Thank heavens for the COFFEE.

be well...

Thankful Thursday... yeah yeah yeah, it's Friday again...

:::sigh:::

I have round 3 of the 'Head Cold of Doom'. That was for you, Hammer. LOL

Apparently, the germs morphed when Hammer got it and he was able pass it back to me so by Tuesday I was a blubbering, nose blowing, sneezing coughing mess. Still same today...

I am hopeful that tomorrow will be better. Please. Really. Let it be better. I try to be good. Really really good.

1. Coffee. 'Nuff said.

2. Puffs. Yeah. My nose is that red.

4. Vaseline. It soothes the above nose.

5. Chapstick. Lips chapped too.

6. My new pj's from Land's End. Best Christmas present ever when you are repeatedly sick and wearing them nonstop. All day. And, night. Yeah, it's been like that.

7. My dad. He bought me my favorite donut yesterday from Dunkin' Donuts. He is the best. Truly. :-)

8. My dad again. On another errand after dinner he bought me my favorite potato chips. He rocks. And, he obviously feels sorry about the pathetic sneezing, nose blowing, hacking mess of a human I have been stuck as for the last 7 weeks on and off. Thanks, Daddy.

9. Books and computer. You have kept me sane.

10. Nyquil. Cherry. You give me 'sound' sleep for about 4 hours... ahhhh

Okay... so that is the 'sick' themed thankfuls for this week!

I said this on Facebook... whatever I did in my last life must have been awful because I am paying for it now! :-/

I have one serious thankful...

11. Fuzzy's ultrasound was negative for appendicitis and gall stones and all we seem to be dealing with is a little nervous stomach. Which sucks, but it is better than anything requiring surgery.

be well...

Thankful Thursday (yes, I know it is Friday... LOL)

So,I was all excited that we were going to get snow today... but we didn't. Just an inch of nuisance. Feh. Gimme a real snow storm please!

I am late, but better late than never, and I am always ready to count my blessings!

1. Coffee. Yep. After fighting bronchitis twice this holiday season and having this congestion linger on much too long, coffee is the only way my brain and body seem to be waking up. And, we had that uber cold spell in the 20's and my steaming cup of coffee kept the chill away! :-)

2. Family. I was able to see most of my family and friends over the holidays and I really enjoyed seeing everyone.

3. My parents. My Mom and Dad who spoiled us all at the holidays!

4. Fuzzy's new bowling ball! His first two practice games were a 224, a new high for him, and a 168! Very nice!

5. Farmville! Great for hours of enjoyment while hacking up a lung and wishing you could sleep.

6. Facebook! Recently, I it has been a blast! One evening this week about 6 of my friends from high school and I had a really giggly silly girl conversation and it was so much fun!

7. Books. I highly recommend the new Steve Berry 'The Paris Vendetta'. Awesome! Also the new Jeff Shaara 'No Less Than Victory' his final in the WWII trilogy. Fabulous. On a lighter note also good reads Wendy Roberts 'Dead and Kicking' and Charlaine Harris 'Grave Secret'.

8. Kindle. I love my Kindle. My daddy bought it for me last year and even though there are certain authors I still want in a hardcover book, there are plenty I don't and read on my Kindle which is such a delight for my hands!!! :-)

9. Uncle K. Things are still not completely settled for him, but they are moving forward. Should be all done soon. I am thankful for the time he spends with my kids and being a friend to Hubby and myself.

10. Libby, Susie, Tina and Pumpkin. My dog and 3 cats. They always provide me with comfort, but this holiday season, lots of laughs too. Lots of cat fights over the tree skirts etc... very amusing!

Well, signing off now!

be well...

Cold as Ice

Damn! Hate to start off 2010 with a swear, but it is COLD outside!

Yep, a balmy 22 degrees here in NJ!

I plan on staying in the house with multiple cups of coffee to keep me warm!

Oh... wait before we go any further...

Happy New Year!

There. I feel much better.

Speaking of feeling better... I am, but let me explain. First, Fuzzy was really sick and that got the asthma all going. Of course, I got it and had bronchitis before the holidays and just started to be better at Christmas.

Christmas was great - family, friends, love, laughing, happy kids, food etc.

Then, we went shopping the day after Christmas and this little kid was hacking, coughing, and running her booger ridden hands all over everything. I purelled (I know it isn't a real verb; I don't care) myself and the family.

BUT, two days later, I started my relapse! Just in time for our trip to NYC! ACK! But, I put on my big girl panties and we had a wonderful day! Saw the Radio City Christmas Spectacular (thanks mom and dad), had a great lunch with Kathy, her Hubby, my nephew, J, my mom, dad, Hubby and the kids! We saw the tree at Rockefeller Center and went to St. Patrick's Cathedral. Saw the window decorations on 5th Avenue. A wonderful day.

Came home and allowed the bronchitis to beat me up. I am just turning the corner NOW, and starting to feel better! YAY!

Good thing, because we have a busy week! Fuzzy has 2 bowling matches! He is on the Junior Varsity team as a freshman for his high school!

ANYHOW, that is my quick update for all of you in the blogosphere!!!

I am back. Yes, I mean it. I will update at least once a week, I promise!!! Just so you know I mean it... I swear upon my COFFEE! LOL

be well...

Fa la la la la... Holly Crap, I'm BUSY!!!

I love my blog... I really do! And, I love all of you, my faithful blog readers!

However, I am really busy, a good busy, but as you can see - the blog has been neglected! So, I am going to sign off for 2009 with promises that I WILL be back in 2010!!!

Merry Christmas and Happy New Year!

May your holiday season be filled

with the love of family and friends and

the hope of peace in the new year to come!

Dawn and family

Thankful Thursday

What started out to be a crazy overscheduled week really settled down rather nicely!

I went to the new rheumatologist yesterday with Hubby. I was not happy to have to go to a male doc, as I have found that female docs tend to be more understanding and in tune. However, I found the new rheumy very understanding and he really listened and heard all my concerns.

It was actually great having a new set of eyes on my issues. He did xrays and a sonogram of my hands and wrists, right there in the office, along with a complete blood workup! I loved one stop shopping!! I usually have to run to one place for xrays and another for blood.

I have a lot of neuropathy issues, always have, his fresh eyes have given us a new plan of attack as well as another diagnosis. He is confident that Fibromyalgia is also rearing its ugly head in my body. Not surprising as it goes hand in hand with Lupus and RA.

The plan is to try Lyrica which will address the neuropathies. The numbing, tingling, weakness and balance issues. As I have mentioned, MS has been ruled out before, and we are sticking with that assumption unless there is a reason to revisit it.

Also to be added will be Provigil, a medication that will help with what to me is the most debilitating part of the disease - fatigue. And, also the cognitive issues. Hopefully, I will be sleeping better with Lyrica and the Provigil will do its magic and I will be like a new person in a few months!

I am happy to have a plan of attack! And, I visit him again on 12/1.

Okay... on to my blessings! :-)

1. New rheumy. So far so good! And, a plan. I like plans.

2. Hubby! Home with me yesterday for the doctors, which was a very long comprehensive 3 hour visit. BUT, today he surprised me by staying home again! Yay!

3. Piano. Pumpkin is having her lesson as I type this... I love it! Christmas carols... have to get ready!

4. Hammer. We have spent this week preparing his application for Eagle Scout and planning his project. Part of that process was gathering letters of recommendation for Hammer. There has been an overwhelming outpouring of love and respect for him. :-)

Kathy, Karol, Dave, Bill, K, you all overwhelmed me with your letters. Thank you. Mom and Dad and Hubby... perfect and just as I expected... we have such a special boy and I am honored that he is ours.

5. Fuzzy. In the last week or so, he has been trying harder and pulling up into A's. If he wanted to he could have straight 100's... it's all about what you put into it, he has the ability. Just needs to work it!

6. Coffee!!!! After months of coping with our Keurig coffee maker malfunctioning and needing to be tweaked each and every day... My dad gifted Hubby and I with a new one for our anniversary - early! YOU ROCK, Dad! ;-)

Well, I think I have taken up enough of your time!

Go to go farm! LOL

be well...

Fur Elise

Hello Blogging Buddies!

Not a lot going on here in my little corner of the world.

I am still coping and in a better place thanks to D'Nile. Is that the pyramids I see over there? Yep. Firmly entrenched, I am.

Feh. It works, and it is silly to worry without knowing what to worry about. And, the pain I can cope with.

Kids are good. Fuzzy is still learning to cope with the fact that he has to WORK to get A's in his high school honors classes. Pumpkin has one honor's class and she is learning to cope with that a bit too.

Hammer is halfway through the planning phase of his Eagle Scout project, which looks to be happening on 11/7. More on that once everything is official! Yay!

Hubby was cranky and tired mostly this weekend. Feh.

We basically had a very quiet weekend at home, which is really unusual and was really needed. I think we all enjoyed it.

The best part of the weekend was listening to Pumpkin practice her piano and hearing Beethoven's 'Fur Elise' which she worked on quite a bit. Very nice.

Tonight is a big NY sport night! We have the Giants on NBC and the Yankees on Fox! WOOHOO!

More soon...

be well...