All She Wants To Do Is Dance

So, that is Pumpkin, now 14, graduating from 8th Grade, junior high, and stepping off into the world of high school...

In March we found out Pumpkin was not having growing pains in her feet, ankles and knees, but instead it was a form of systemic arthritis. Since then it is confirmed that Pumpkin has JRA, juvenile rheumatoid arthritis.

Of course, having me as her mom, there was a higher chance of it happening than if I didn't have the lupus etc. Sigh. How do you deal with that? Well, you don't really. You feel like shit. You feel guilty. You feel angry. You feel sad.

Then, you realize none of those emotions - and certainly not the 'blame game' is going to help anyone. Especially, not Pumpkin.

So, you shove all that down and focus on her and her needs, wants and desires and making her life as uncomplicated and easy as you can while coping with a chronic disease.

We have a great pediatric doctor. Her office is also fantastic and I am very happy with their responsiveness and help so far. Believe me - that is half the battle.

We address the symptoms by helping her cope with the pain and anti-inflammation via medicines and we address the disease directly by adding a DMARD (disease modifying anti rheumatic drug), in this case methotrexate. It suppresses her immune system so it will be more difficult for it to attack itself. I, too, am on the same drug once a week.

Pumpkin just started this bigger gun last week with a small dose and this week with her regular dose of 15mgs, and she has tolerated it well and I am happy to say she is feeling better.

Usually, it takes a few weeks for it to kick in, but a lucky few get instant relief. It seems she has been that lucky. :::knocking wood:::

In fact she is walking on the treadmill right now, second day in the row!

The road ahead will not be without its obstacles. However, I will be there paving the way the best way I know how.

I may not be able to bend the universe to my will but I WILL make it quiver a bit when it comes to my babies and making life right for them.

And when she wants to dance... she will.

be well,
Dawn

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...

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

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...

Thankful Thursday

Time to count blessings and not a minute too soon!

Panic mode is over, and I am firmly entrenched back in my denial place! LOL

1. I am grateful for my house, my home and my family.

2. I am grateful for my health insurance.

3. I am grateful for the meds that I have to help me and the doctors that are my partners in my healthcare.

4. I am grateful for the friends I have in my life.

5. I am grateful for my online friends, their availability and support have been invaluable over the last 7 years of coping with chronic illness. (rheumatoid arthritis, and for the last two years the brain thingy)

6. I am grateful for the technology that allows me to not only keep in touch but that lets me play stimulating and challenging games - some for fun - some for brain exercise - all of which help me cope and keep my mind off of worrysome stuff.

7. I am grateful for my pets. Yes, even though cleaning up cat hairballs and dog puke sucks, the unconditional love and joy they give daily far surpasses the difficulties they present on occasion.

8. I am grateful for Boy Scouts. Hammer has begun the planning for his Eagle Scout project which should be executed in the next 2 weeks. Fuzzy will begin planning his in the new year as he is just completing the last badge. Scouts has afforded the boys many opportunities for leadership, community service and personal growth.

9. I am especially grateful this week for my Hubby realizing that a hug, a cup of coffee and a snack would go a loooooonnnnng way.

10. I am grateful for the outlet that my blog and Facebook give to me and therefore, I am for YOU, the reader.

11. I am also grateful for the clarity health issues have given me in life. It sharpens into focus that which is truly important; those special gifts and blessings that no illness can take away.

Life is good. Thanks for being a part of it!

be well...

Walk Like an Egyptian

You know what? I like denial. I like my 'denial' world better.

Does that make me a bad person?

::: sigh :::

More soon...

be well...

And So It Goes...

Need to do a stream of consciousness post here...

So, our new insurance started and my rheumatologist who is at the #3 hospital in the US for rheumatology (behind Mayo and Hopkins), Hospital for Special Surgery in NYC, is NOT in it. Crap.

So, I have an appointment with a highly recommended local guy. We will see how it goes. I will still go to see my HSS rheumy once a year out of my own pocket. I will not give her up completely. And that is another thing. I LOVE having a woman doc. Not ONE woman rheumatologist in all of northern NJ. ACK. Pisses me off.

My jaw/spasm/pain/lower lip thing is still happening. This may or may not be related to the rheumatoid arthritis. I may need to be retested for MS as this is a common MS symptom. It may or may not be related to the brain thingy. Ack.

My right hand is swollen and painful. That is unusual. Usually, my left is the worst one and the right is just achey. Strange. Both my elbows are swollen and clicking and are red and inflammed. Right hip doing its usual annoying achey pain thing.

My diet. Well, I haven't gained, but I haven't lost either. That made me cranky and I cheated all last weekend, but I still didn't gain. Not bad. I was mostly good this week, but not great. I am keeping track of the calories and most days I have been under, but probably not the best choices.

Fuzzy and Pumpkin have both had reality checks that they may have to actually improve and utilize study habits to get the A's they usually get without lifting a finger in school. LOL I have worked with both of them some, but they were both a little resistant. Also, they have slacked on their chores lately. So, they have the punishment of 'Going Amish' hanging over their heads this weekend...

Foolishly, the Terribly Twosome also tried to act 'entitled' this week. Very, very dumb. Nothing pisses their father off more than when they act unappreciative and feel 'entitled' to their goodies. ie; computer, vid games etc. Again... a reality check was delivered.

Hammer has been great. He always is happy to help, never forgets his chores, and is ALWAYS appreciative and understanding. His biggest problem is writing. He hates it. Having Asperger's/being on the Autistic Spectrum he has fine motor issues and being dysgraphic - where writing actually hurts and is very difficult is one of his issues. Although, over the years he has gotten much better, it is a really difficult hurdle for him and something that I need to prod him to work on. It is hard sometimes because I hate causing him discomfort. :(

Even though we have been in school since 9/9 I am still compiling paperwork for Fuzzy's asthma plan. Tuesday we go to the doc's office to get that all settled. sigh.

Things have really been hectic. Lots of Scout meetings, school meetings, doc appointments etc. I really hope it all settles down.

I am going back to Atlantic City with my mom on business again this year in November. I am looking forward to it, as always. It is nice to get that time with my mom.

Tuesday night we have a meeting with the scoutmaster planning out Hammer's Eagle Scout Project. I am excited for him because he worked so hard on all his badges and this is the last step. If all goes smoothly, Hammer will be the 50th Eagle out of this troop!!! A special honor indeed.

I haven't seen Kathy and my sweet little nephew J in over a month. It is just a little under a month for my cousin Karol and my other nephews. This time of year is always hard. School, holidays, crazy stuff. Sigh.

Hubby and I will be celebrating two milestones soon. October 26th will be 19 years from when we became 'officially' engaged, with the ring and all. And, then exactly two weeks later on 11/9 it will be our 18th Wedding Anniversary. Wow. Time flies... sometimes it really seems like yesterday. How could it be 18 years? I don't feel like 18 years have passed by... yet it has.

There are many who never thought that we would make it this long. Our romance was quick and whirlwind... how could we really KNOW. Well, we did. And, we still feel the same. I was very lucky to find my other half, a best friend that I can laugh and love and journey through all of life's challenges with by my side. :-)

Okay, enough rambling for today...

be well...

I'm Still Standing

Mondays. Never know what they will bring!

We got hit with the engine light on in the car. Ack.

Thankfully, our local 10 minute oil change place has a computer thingy and it said that it was the oil pressure sensor which may/or may not have been fixed by having an oil change. It worked. They changed the oil and the filters and the pressure came back up and the light went off.

YAY! We leave for our Boy Scout trip to Gettysburg on Friday and we do NOT need to be worrying about anything with the car when traveling about 5 hours from home!

In preparation for our trip I am rereading the book 'Killer Angels'. It is the book that the movie 'Gettysburg' was based upon, in case you are not familiar with it. I have read the book many times before, I am guessing this may be around the 12th time. Definitely more than ten.

I am going to do a presentation for the Scouts and parents about the Battle of Little Round Top and Pickett's Charge and the spot called the 'high water mark' of the Confederacy, by the 'copse of trees'. I am going to try to make it more real for the boys, have them stand in positions of both Blue and Grey soldiers and really get a feel for how it happened.

This is my third trip to Gettysburg personally, so being familiar with it already will help sharing this amazing place in our history with the boys.

It is a busy week around here! Hubby has his 'Man Scout' meeting of all the leaders tonight. Tomorrow night is the Senior Patrol Leader meeting, which Fuzzy runs as the 'head' scout, and all the patrol leaders, their assistants etc. It is basically a planning meeting. Then, Wednesday night is the regular scout meeting.

Thursday morning as a member of the Board of Health I will be working the free flu shot clinic at our Senior Center. Just regular shots, not H1N1. Then, Thursday night is Fuzzy's high school Back to School night. Friday morning is a meeting at the school with regard to his asthma and the special 504 set up we have to manage it.

Somewhere on Thursday and Friday we have to pack for the trip as we leave in the mid afternoon on Friday!

As I said, busy, busy, busy! Never a dull moment around here and no time for my rheumatoid arthritis to be acting up. Not sure how that is all going to play out, but I am doing better. The hip has settled down to a dull ache and I have no problems with putting weight on it! Yay! I may still look into taking a prednisone taper though... not sure.

Fuzzy and my dad are shooting in trap/skeet league together this fall. It is Fuzzy's second time around, my dad's first. Today, Fuzzy hit a new high with 17 of 25 in his trap rounds! He was thrilled.

I guess that about catches you up with us!

be well...

Thankful Thursday

I am sure you are all familiar with this phrase!

RA SUCKS. Ok... enough whining, I was having a good week and in spite of my latest flare issue resulting in trochanter bursitis or hip impingement or just plain old BUM RA HIP ISSUES, I am going to CONTINUE having a good week.

Thankfuls..

1. Hubby. I asked Hubby to stay home so I could load up on the vicodin and get some 'better/more' sleep. And, Hubby stayed here, working from the house. Thank heavens for technology that makes this possible! Internet, Blackberry, fax machines...etc.

2. Kids. All three have gone above and beyond in supplying help to Mommy during the latest flaring and this hip issue.

3. Boy Scouts. It provides great leadership skills and experiences. For the family too. Next weekend we have a Scout trip to Gettysburg. It will be our second as a family. The boys and Hubby will be camping ON THE BATTLEFIELD. Soooooo awesome. Pumpkin and I will be camping at the Marriott Courtyard! LOL

Positive energy and prayers needed for my hip and flare to go AWAY so I can keep up in Gettysburg next week!

I may have to do a prednisone taper. I am thankful that I have this opportunity, yet its side effects make me hesitant. So, waiting at this point to see what happens.

4. Autumn. Oh how I love that crisp feeling in the air! No other season gets that snap. Nature's kaleidescope show is soon to begin on the trees... sigh. I love it! ::: sigh :::

5. Coffee. Tried a new flavor from Green Mountain called Pumpkin Spice. Not as awesome as Gingerbread, but close! Yum.

ps... coffee machine still acting up. BJ's has one on sale thank the caffeine gods.

6. NCIS and NCIS LA! I love both these shows! Yay! I am just happy that the new fall season is upon us and we have NEW things to watch! Some just fun, some thought provoking, some full of adventure and puzzles.

7. Life. It is good. I have people I love all around me. My kids, Hubby, and parents. I have friends who care. A roof over my head and money to pay the bills. Books and computer to entertain and educate.

COULD BE MUCH WORSE.

And, that fact is NOT lost on me for one minute!

8. Pets. Even though Libby keeps pooping on the front lawn and pissing off my dad, even though Tina still hates me and loves Hubby who hates her, even though Suzy knocked over the hamster cage AGAIN yesterday, even though Pumpkin (the cat) is very obviously declining as she ages --- I wouldn't trade the love, comfort and entertainment that you all provide on a daily basis.

The hamsters could go though. Anyone? lol

9. Diet. It has been a tough two weeks. Feeling the loss in my clothes, but the scale stayed the same. First, I went 2 pounds while Aunt Flo visited, and now, I am back down but still holding at 10 pounds total. This is pissing me off, but this is also how we women lose. So, I am waiting out the plateau. I can't exercise because of the hip... frustrating.

I believe that covers it. :-D

May this entry find you well and happy in your world!

be well...

Thankful (but cranky) Thursday

I am thankful. I am blessed in many ways.

I am just not feeling it today on the outside, but it is there on the inside, in my head.

I am blessed with 3 marvelous kids who give me so much joy and purpose in life, much more than they will ever know.

I am blessed with an amazing set of parents who give not only time and money, but the gift of themselves to me, Hubby and the kids in so many ways.

I am blessed with insurance. Even if it is crappy. Even if my the ultimate insurance situation is still not settled, I do have something. Better than nothing.

Hubby has gotten his head out of his butt, and as always hold my heart in his hands.

So far, so good, with regard to any terrorist activity in NYC. Maybe they did squash the right bugs so far.

I have coffee, I have wonderful pets, and nice house (even if it needs work done, so does everyone's right?) and a nice car that Hubby and I share.

My parents are healthy. My Hubby is health and MOST importantly my kids are healthy.

Here is the rub and the source of cranky. I am not healthy.

This complicates my life in many ways.

Yeah, the little tiff with Hubby came from it, it causes inconvenience. It causes frustration for my family with that inconvenience.

It causes pain. I don't remember the last time I didn't have pain. The best times are when I do a prednisone taper. Day 2 is usually the best because you get this super buzz from the prednisone where you feel like superwoman and it drowns all the inflammation and you feel like you can conquer the world!!! But prednisone is bad for so many reasons that I am happy not to be on it except for the rare tapers that I do.

Pain is a constant. Every time I roll over in bed, when I get up, when I walk, when I type, when I open jars, when I blow dry my hair, when I stretch to grab something, when I stand, when I lay.

Fatigue. Tired is something you get over. You sleep, you rest. You wake up refreshed.

Fatigue doesn't leave after sleep. It persists. Normal people walk through a world of chicken broth. I mostly walk through a world of pea soup. Hard to move through...

Then, there are the cognitive issues too. That is part of the pea soup. You don't think and react with the clarity you used to have. It is called RA Fog or Lupus fog or Rhupus Fog for those who are active in both diseases. It causes some pretty funny moments, and some very frustrating ones, too.

Nerve issues really suck. Nerve pain usually happens when a nerve gets stuck in the inflammed area of a joint.

That is what is going on along my jaw. It is apparently inflammed and causing spasms and strange icy hot sensations. It is not fun. Only my left side. It is the bottom of the trigeminal nerve. I am not happy.

My left elbow is a mess and my right hip and foot. Both my hands have several fingers sore and inflammed. My ankles are in their usual state of unhappiness.

I am overdue for a rheumatologist appointment and haven't had any bloodwork since May. I haven't been on the strong RA drugs since my reaction to the Enbrel in April. Or was it March? I can't even remember.

I am frustrated, fed-up, and sick of being sick. There is no cure. It never ends. It is an endless roller coaster loop of good days and bad days.

Usually, I let it all out and I feel better. Today, not so much.

Tonight is back to school night for Pumpkin. I don't know if I will make it. That upsets me.

be well...

(ps... being sick does clarify for you all that is good and important in life and usually that is what keeps me happy. I will get over my little pity party soon. Don't worry)

Mad World

Not a great week so far for me. Beware, whiny post ahead.

I have a new strange flare thing happening for a while now but the last few days have been particularly uncomfortable. I am having a spasm in a jaw/facial muscle accompanied by pain and a hot/icy sensation. I know it is a nerve thing (having had them before) and it is pissing me off.

Hubby has also been pissing me off.

_

There. I. Said. It.

First, on Saturday he said something really hurtful. He realized it wayyyy fast, apologized repeatedly and profusely, but you know what? You can't unsay it. No rewind and do over switch.

I put that away to celebrate the birthday and all was fine, and it would have gone away at that if yesterday am didn't happen.

Hubby got in one of his pissy don't want to deal with driving the kids but mostly don't want to deal with your disease/RA/incovenience moods. He usually drives on Mondays as I take my methotrexate Sunday night. Of course all summer it was a non-issue, but now it is school time again.

It is a pain for him but I deliberately take the medicine then so it doesn't interfere with the weekend, and usually Mondays are quiet days around here. If Hubby isn't driving that means he drives the kids, drops the car back here at the house and then walks to the bus. I get it is annoying but I still don't need or deserve the mouthful of crap before he did it.

The RA is not my fault. I can't control it, and didn't choose it. Mornings have been and will always be bad. The WORST time of day for me. Pain, walking thru pea soup (fatigue), not good.

Then, this morning I get up thinking he is going on the bus and I don't feel like any crap from him so I am gonna do the kids and all he will have to do is get up and go.

He tells me 5 minutes before I leave that he needs the car.

WTF? Sooooooo, you let me get up do the kids etc, when EVERY other time you need the car you tell me the NIGHT BEFORE so I can SLEEP in and you just get up a little earlier do the kids and bolt straight away with the car.

How passive aggressive is that? I am totally pissed off.

THEN, let's add in the wonderful terrorism threat. They think that the cell and it's plan of bombing either subways or other sites in NYC is still in effect.

So, I get to be pissed off at Hubby AND a nervous wreck that something bad will happen to this man that carries my heart with his every day.

:::Sigh::: And, I am sore all over because rain is coming in. Dammit.

Oh yeah, I am a ball of freakin' sunshine today.

Pumpkin is bringing home her best pal, Penelope (nickname). I guess I have a little less than 2 hours to get over myself then.

Hammer is helping me do wash and gave me a nice shoulder rub. He is just the sweetest man-child ever. :-)

Okay... I think I feel a little better after venting for all of you.

A little... maybe another cup of coffee will help. And, since I am not driving anywhere anyhow a 1/2 a vicodin. :(

be well...

Thankful Thursday

I just love this lolcat. I hear his voice in my head like Ralph from the Honeymooners!

_

I don't know why, but lately when I post a picture I can't have any hard returns in my entries. I know it is probably something stupid that I am doing, so if you can tell me what... please feel free! LOL

_

1. Hubby. You know what Beth and Ken, he really does listen to me about 90-95% of the time. Like Beth said, it is just that 5-10% - whoa nelly! LOL ;-)

_

2. Sleep. I got 3 hours last night. It could have been worse. I finally fell asleep around 1:30 and woke up WIDE AWAKE at 4:30am. I read online on my iphone for a while, then I decided that if I was still awake when my mom went to work at 6ish, I was getting up. :::waving::: Yep, hi mom! LOL

_

3. Kids. They are not happy that I just woke them. Pumpkin grumbled her way down the steps and collapsed under a blanket in the family room to get some more Zzz's. Fuzzy grabbed his fruit bar and iced tea, added a blanket and put on the news. The morning routine has begun! (Hammer gets to sleep in until 9ish, and Hubby told me to go away until after I drove the kids to school. Ok then, guess no morning meeting for him!)

_

4. Donna. Thank you. You know why. It made me feel 'useful' for the first time in a long time! And, you are right, when you know someone it is easier... so maybe at some other point in the future.

_

5. My cousin Karen. As I mentioned yesterday, life gets away from you and sometimes you just have to grab it back and hang on again!

_

6. Coffee. I have a feeling it will be instrumental in my survival today. After all, I am awake but it isn't like I am bouncing around ready to do a tango! It is more like the 80+ year old shuffle around here right now.

_

Ahhh Green Mountain Caramel Vanilla. YUMMY!!! Cup 2 down the hatch! WOOHOOO!

_

7. Vicodin. Well, I wouldn't have even gotten 3 hours sleep without that!

_

8. Subway and Dawn and John. I have to tell you, having a friend that you grew up with (Dawn) open, own and work at a Subway in your town is awesome. The food is uber-fresh, the place is SPOTLESS clean. I am in love with the Veggie Delight! Maybe I can give Jared a run for his money, as I am up to 8lbs lost now! Yay!

_

9. The 'Lose-it' Application on my Iphone. First, I should thank Hubby for indulging me with the iphone last year as my anniversary/birthday gift. The 'Lose-it' app is amazing. I track my weight and my calories and more on it. Chronicling each item I put in my mouth is really a great weight loss tool!

_

10. Yankees. They are so hot and this season has just been AWESOME! And, Traci, doesn't matter one iota that they lost the game on 9/11 that Jeter hit the 2722 hits within. You have no idea unless you live in this area the 'lift' that it gave to everyone to have something really fun and positive for that date now to reflect on. ;-)

_

Okay... time to torture the kiddies to brush teeth, get dressed, recheck school stuff etc.

_

Have a great Thankful Thursday everyone!

_

be well...

Take Me Out to the Ball Game

What a great sports weekend!

First, on 9/11, and it really was perfection that something so great happened on that day in New York, Derek Jeter got his 2722 hit, placing him at the #1 spot as the all-time career highest Yankee hitter. With Lou Gehrig, Mickey Mantle and Babe Ruth behind him respectively.

Amazing company to say the least; Jeter is truly a living legend himself.

Then, FOOTBALL! Opening day for the Jets and Giants! Wooohooo!

And, they both win!!! Yippee! There were happy faces all around our house!

Pumpkin stopped hating me as a mean mommy about two hours after I posted on Saturday. After all, dinner came under discussion, and she couldn't possibly miss out on that! lol

My diet is going well so far. I am happy to report that since getting my scale last week, I have lost 6 pounds. :-)

I know it won't continue at that pace, but I am proud. I have been walking every day that is not raining also. It's all good.

Unfortunately, for the last two days my left elbow has been screaming loudly. If only I was like the tin man and could just oil it and have it done with. :::sigh:::

You would think with the exercise I have added it would be a weight bearing body part, but no. Rheumaoid Arthritis never makes sense or makes it easy! LOL

The only problem I have had since starting walking is my middle toe on my left foot that is beginning to turn in funky ways starts to spasm. It happens at strange random times, too.

Again, RA makes no sense! LOL And, did I mention RA Sucks! LOL

Yes, I think I have said that before...

Gotta laugh...

be well...

I Gotta Feeling

This is for you, Em.

This is for my cousin Karol!

It has been a good weekend. And, I am hopeful for a good week!

I was able to see my friend Fred on Friday night! We had a really nice visit. Talked about his dad. Caught up on life and health issues. But, most importantly we laughed and hugged. Very nice.

Life goes too fast, you need those moments!

Yesterday, Kathy came up to visit with my sweet nephew J and my dad's sister, my Aunt Bea also came to visit! We had a fun afternoon of chit chat, watching the kids play outside and dinner at Houlihan's.

Today, Uncle K is here! We are watching the first half of Yankees day/night double header. We are having a BBQ for dinner with angus hamburgers, hot dogs, and lots of salads! :-)

You know, I haven't really done much all weekend, but it was FABULOUS!

I started a strict calorie driven weight loss program last Sunday. I just ordered a scale so I don't know how I am doing yet, but I do know my weight from my last doc's appt. Hopefully, it will be less than that when the scale arrives on Friday. We will see. I feel good. I am eating healthy. I need to get this prednisone weight off. I have been walking.

I had one day with a lot of pain, but so far so good. The RA is being quiet... Shhhh.... don't wake it. It is such a vicious cycle. You gain weight because of the meds, and when you exercise it aggravates the disease and starts a flare.

However, I have decided that I am going to do my damndest to push thru the pain and hopefully get to the other side. Pray for me. I need it!

My insurance woes are still not settled, hopefully soon, but I could use a few more prayers and positive thoughts there too!

Yikes! I sound so needy!

Sending prayers and happiness out to all of you, too!

Tomorrow, I will be getting the kids settled and organized for the first day of school on Wednesday! I think we are all ready for that! LOL

be well...

Thankful Thursday

Exactly, dear kitty! Me too!

So, the time has come for me to reflect on the many blessings in my life!

1. Coffee. Hey, some weeks it isn't on the list at all, or near the top. This week - well, it has earned its place. Not a lot of good sleep happening.

2. Friends. So many to thank in so many ways... you know who you are... online, in person, via the phone, via the email. You all rock. Thanks for your support this week.

3. Kids. At least they are healthy and normal enough to bicker with each other! LOL They are wonderful kids, and I have been blessed with the honor of being their mom. I am thankful for that, always.

4. Hubby. You make me laugh, you make me nuts, but you always make me happy that you are there at the end of the day, good or bad. Thank you.

5. My parents. I am so blessed that they share my life on a daily basis. They have helped make what seemed impossible to cope with manageable, and help me keep my sanity on a daily basis.

6. Libby. My sweet puppy. We just had a nice talk which ended in me giving her a some belly rubs. :-)

7. The weather. Yesterday, before dinner, Uncle K, Hubby, Fuzzy and Pumpkin all played some basketball. I sat in the shade and watched. It was a lot of fun. Lots of laughs, trash talk and silliness. Pumpkin claims she was born with a disability that prevents her from doing a lay-up. I told her lack of skill is NOT a disability... hard work can cure it. LOL

8. Orientation. Yesterday, Fuzzy had his high school orientation. He went reluctantly but came out with a great attitude and a new found excitement for the new year that begins on Wednesday! Yay!

Can I ask everyone to pray that there will not be a health insurance glitch this week? Heaven knows most insurance companies would be glad to dodge covering me with the Rheumatoid Arthritis, lupus, and brain tumor. Ack. We do need some kind of insurance reform... don't have the answer as to what... but something... thank you.

I hope that this entry finds you all with a joy in your hearts and a song on your lips!

be well...