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...

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

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)

Thankful Thursday

Ahh... Thankful Thursday... you do like to sneak up on me! Like now, very late on Thursday... actually Friday am! I am having trouble relaxing because I needed to drink an extra cup of coffee at about 4pm today, and now the caffeine has me up.

I drank it in order to have a little extra 'oomph' because tonight we had a high school 'open house' to attend with Fuzzy. It was good, but long. Whew.

Here are my thankfuls...

1. I am thankful for Hubby, and that the biggest complaint I have about him is that he is a big baby.

2. I am very thankful for coffee! Especially, GINGERBREAD! Yay! It is a seasonal k-cup that I can only get for my Keurig coffeemaker during November, December and January! My first cup of it yesterday was just heavenly! I made a big deal out of it and Hammer was laughing at my lunacy as I turned the first cup into a momentous occasion!

3. I am thankful that on Monday I will be heading to Atlantic City with mom! YAY!

4. I am thankful for my upgrade to the iphone so I can keep in touch with home easier while I am away! I will send them pictures and texts and emails.

5. I am thankful for my early birthday/Christmas clothes from my mom and dad since I needed some new winter things and I can wear them next week on my trip first! (ps... My birthday is coming up on 11/22, since a few of you asked)

6. I am thankful for my kids and my family and my wonderful busy life! And, although it has kept me away from the keyboard, I know you are here and will be here when I am able to get back and catch up properly!

7. I am thankful that I have good healthcare and access to medicines that are helping me to manage my chronic issues! Today, I would never have made it all day and through and 2 1/2 hour Open House without the aid of vicodin. I was really hurting, but after the vicodin I was able to focus on my son and all the info that I needed to absorb tonight.

I will be keeping you all in my thoughts and prayers! This may be my last post until somewhere around 11/24! I will try to pop in and leave a quickie if I can, but if now, know that I am okay!

Maybe I will even win some money in AC! Wish me luck!

be well...