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...

Thankful Thursday

You know you agree with Maxine... don't try to deny it! LOL

I have to say that this week flew by! One would think that with a cold it would feel slow, but here it is, Thankful Thursday again, and it feels like I just did one! LOL

So... thankfuls... hmmm...

1. All of you. I was reading journals this am and had quite a few laughs, smiles, and even some great useful information! Thank you all!

2. Hubby. He drove the kids this morning to school, then dropped off the car and walked to the bus. Just so I can sleep and try to shake the remains of this cold. He has done that just about every day he can to make it easier on me since mornings are so hard even when I don't have a cold, and I truly appreciate it. The little things really mean a lot.

But, just so his head doesn't swell too much, I will remind him of the years I worked and had to drag out one then 2 kids every morning because he left for work by 6am then. LOL heh heh heh

3. Coffee. Finally, the seasonal flavor that is my favorite is back out again! Yay! Gingerbread! YUMMY! It tastes basically like cinnamon coffee. I love it. I will stock up as much as I can!

4. My life in general. Choose joy. Always better for you than being stressed, sad, or cranky.

"A leaf fluttered in through the window this morning, as if supported by the rays of the sun, a bird settled on the fire escape, JOY in the task of coffee, JOY accompanied me as I walked."
Anais Nin, 1914-1977, French-born American Novelist, Dancer.

Joy is there in the simplest of things.

5. Coffee. Oh did I say that already? Going to get more...

Find your joy today. Think on your blessings. Join in on Thankful Thursday.

be well...