Since (I've) Been Gone

Wow, so much has gone on in the last month, and yet, so much has not happened all at the same time. Strange that. Very strange.

Bringing you up to speed... The biggest news by far is that my boys had their Eagle Scout Court of Honor... picture above. They have about 10 plaques and 30 plus letters each from local, state, and national organizations, current and former presidents, vp's, senators, governors etc. It was a really moving ceremony (altho 95 degrees in the school gym) and afterward we had a nice party back at the house!

The Eagle Scout ceremony was the at the end of a string of consecutive weekends of camping and the HUGE spaghetti dinner fund raiser that the Scouts do and my Hubby chairs. And, the Monday right after I went away!

Mom and I went to Atlantic City for her work. This was my 4th May conference with my mom. It was nice. We enjoyed ourselves and I came home with $100 more than I left with! Always a plus! We had nice dinners and fun playing poker machines and lots of slots.

Unfortunately, my health didn't cooperate fully during any of this and by the time I arrived home I was a mess.

Full lupus flare, with the whole peripheral neuropathy thing going on. That is pins/needles/numbness and pain. It was down my entire right side. From the tip of my head to my toes. I have spent the last week tossing and turning, and resting.

I have been experimenting with my meds and with self medicating with a little wine/beer/or liquor to help me sleep. Normally, I wouldn't do this, but I am waiting to get into the new rheumatologist in July. Ack.

This weekend, Memorial Weekend (kudos and thank you to all in the service, past and present) we have nothing much to do. Tomorrow, the boys are heading in to NYC to see the Fleet Week ships and then we have a family BBQ to go to.

Coming soon we have a combination Scout trip and family trip to the Inner Harbor, Baltimore. My dad is coming too (mom and my bil Uncle K will be home) and we are trying to get to a game at Camden Yards on Friday night, Saturday is Fort McHenry, then Hubby and the kids are sleeping on the USS Constellation with the troop. The ship was a former slave ship before being commandeered for the Navy and becoming a war ship in the Civil War and after. Then, Sunday we want to go to the National Aquarium. It is awesome. We visited in 2001 and the kids barely remember it.

As you can imagine, having the Lupus acting up is not going to mesh with the Baltimore weekend plans.

Enter the PREDNISONE. Yes folks, this will be my third round of the dreaded stuff since the holidays. It's a love hate relationship... it works, but the long term side effects are not good. Even in the short term a taper makes you a little nuts, but I need to do it. I need to be in better shape to push my body for the trip.

Things have been hard. Very hard. Lots of tears, lots of frustration. Lots of pain and not enough meds to cope.

It is hard realizing that I am probably not going to be able to do all the things I thought I would do. I want to travel, see the US and Europe, Alaska, Australia. Probably not going to happen. I want to see my grandchildren and do awesome stuff with them... I can barely do stuff with my kids, so that is probably not going to happen. I thought I would go back to school someday for fun... probably not going to happen.

I often feel I am not enough. Not good enough at being a mom, at being a wife, at being a daughter. Lots of little comments and jibes from family seemed to be repeatedly driving that point home. Why isn't this done? Why can't you? Why are you too tired? Why? Why? Why?

They know why. I know why. It sucks for everyone dealing with this chronic illness/disease/pain.

It's been hard.

Yesterday, I was having a particularly bad day and my dad handed me a box. He said it was a Mother's Day gift he bought me but it was on backorder and just arrived. It is a gold heart with rose and a ruby. On the back it says, 'My little girl yesterday, my friend today, my daughter forever'.

Needless to say I was overwhelmed. Lots of tears.

Maybe, life isn't that bad. Maybe the fact that I am blessed with the love of my parents and Hubby and kids is enough. It is has always been enough for me, but...

... even more importantly, maybe I am enough for them. Maybe just maybe.

Hope this finds you well...

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...

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...

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...

Hold On Loosely

... but sometimes I need you to hold me completely up.

And, today, Hubby did that. Thank you, hon.

Tough day, and he came home early bearing gifts of Dunkin Donuts Iced Coffee and a cheesy bagel twisty stick thing and most importantly, just his hugs.

My appointment for the neurosurgeon is going to be November 10th. The day after our 18th Anniversary. That is three weeks from today. That is too long. Too long to worry until, too long for discomfort. :(

Next week I have the appointment with the new rheumatologist.

Today, Fuzzy's pediatrician appointment was cancelled further pushing back our paperwork for the school. Ugh.

Onward and upward...

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...

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...

What I've Done...

So, on that theme... I am sitting here eating a coconut Dunkin' Donut because tomorrow it will be stale and that would be a shame. Wouldn't it?

Our cat Tina will also eat dog food and occasionally chomp on a piece of a dog biscuit. I will have to post a picture of her 'fatness' and Suzy the 'chubby one' soon. LOL

My nephew's week came to an end today! Karol came to pick D up. It was a really nice week. He and Alex are pretty close and they had a really great time together. They are only 5 1/2 months apart in age, so it is great. It was nice seeing Karol two weeks in a row, also. It was a shorter visit than last week, but still a visit!

Kathy also came up for a visit today and stayed for dinner too! J is getting so big! He is too funny too! Such a LARGE personality in a small package! LOL J is having a wonderful summer in camp and brought us some of the many great projects that he made! The most impressive was a monster clock made of all puzzle pieces! I wish I had taken a picture of it to show off! Dang!

Going backwards to yesterday, we had our friends Bob and Ilene over with their son and daughter. Hubby and Fuzzy cooked burgers, hot dogs and chicken breast on the grill and they brought the salads! We also got this amazing Oreo cake from the restaurant supply store and it was scrumptious! It tasted just like old fashioned ice box cake!!! We adults got quite the kick out of reminiscing about that!

Yesterday was a gorgeous Saturday - the complete opposite to the stormy rainy Sunday that was today. Even so, I have to say that it was a really fun and happy weekend.

I was in pain, my hip was awful all day, Friday and Saturday, and my elbows throbbing too all day today, but when the rest of the world is right, I can suck it up and I did. Tonight though, I am hoping that the vicodin will kick in to help me sleep. Soon.

Off to lay in the bed and give it a shot...

be well...

The Long Run

It was quite a weekend around here!

Friday, my cousin Karol and bf/sister Kathy came to visit with children in tow. We had a really nice get together! Lots of coffee, donuts, and chit chat! Then, the teenaged boys stayed in with McD's, and the rest went to dinner. It was very nice. Especially for my mom, whose birthday was the next day.

Saturday, for the first time in close to 20 odd years, my mom, dad, and I went out to dinner for my mom's birthday! Just the three of us! We went to a posh local Italian restaurant and ate like royalty! Yum!

Hubby was away with the kids on a scout camping trip. Pumpkin was able to go because it was camp tenting. It was her first time, and she had fun! In spite of the rainy weather, they were able to have 2 great campfire cooked meals and S'mores!

I got an upgrade on my cell phone to an iphone as an early birthday present today from Hubby and the kids and I am having fun playing with it!

Sunday was our anniversary. It wasn't Shakespeare and roses, but it was okay. Dinner was out at Houlihan's with the kids and my parents. A combo celebrating Grandma's birthday, which they missed, and our anniversary.

Hubby was the one who screwed up and actually scheduled the camping trip on our anniversary. I was not happy. I figured that knowing that, he would come home and take me to lunch or at least coffee together alone, trying to squeeze in some romance.

Oh no. Instead, he came home overtired, cranky, slept on the couch for most of the day, when not watching football, complained about how his hands hurt, and has been snippy with me on and off since then.

As you can imagine, this sunk the sails on the 'Love Boat' pretty fast. Happy freakin' 17th! Today, he is still the same bundle of overtired sludge and complaining about his poor arthritic hands.

Yeah. Complaining to me. Who lives with that all the time, 24/7. He promptly fell asleep at 9:30pm on the couch because being in pain makes you tired. Really? No foolin'? Imagine that. And, it makes it hard for you to sleep too? Wow. AMAZING. If you didn't tell me I wouldn't know. Okay, enough sarcasm for tonight! lol

So, as you can see, I am not particularly happy with him right now.

I can't wait to go to Atlantic City next week with my mom. It is the biggest treat to get away and have the special time together that we get then. It is a HUGE break for me which is really nice.

I just let the dog out and stood on my back stairs admiring the crisp air and gorgeous clear skies and big bright moon. Just magical.

My hubby may be wallowing in his mire and trying to sink me into it, but I refuse to go there!

I am still wayyyy behind reading journals! Ack! This time of year is so crazy for me, I will do my best! Hopefully, tomorrow will be quiet.

be well...