Coming Through the Other Side

Saturday, August 27, 2011 0 Comments A+ a-

This week has been better.  It started out rough with residual pain and aches from the weekend.  I spent Monday through Wednesday pretty much in bed.  I was up for a little bit each day, but mostly stayed under the covers and tried to not move.

Tuesday the new script came from the rheumy.  THANK GOODNESS!  We had to hit three different pharmacies to get it.  Finally, though, I had good drugs in hand, and slept like a baby!  All night.  Then most of the day on Wednesday as well.

Thursday I mustered up energy to go to yoga and my monthly massage.  Both were therapeutic, but by the time I got home, I had reached my limit and drugs were needed.

So, the rest of Thursday and yesterday were spent all doped up, zombied out and sleeping. Fortunately I don't need the meds every 6 hours like prescribed and can hold off for 10-12.

Not ideal, but, I'll take what I can get right now.

At least today, I only want to chop off one finger.

Couldn't Have Said It Better

Monday, August 22, 2011 0 Comments A+ a-

Having Scleroderma is nothing you can explain to someone who doesn't have it.

There are multiple components that can knock you on your ass at any given time. There's a skin aspect that is an itch, 100x worse than any poison ivy you've ever had. Relief is hard to come by. You literally want to rip your skin off.

The arthritic component makes just laying in bed hurts. Sometimes, it's so bad, it seems that your hair hurts.

If it scars your internal organs, like your lungs, breathing hurts. Seriously. It can feel like you're being stabbed with a knife every time you take a breath.

All while looking perfectly healthy. People don't always believe you're ill. They certainly can't relate unless they've walked in your shoes.

It's refreshing, in a sad way, to find others that get it. That know your situation. It's sad that anyone has to know what it feels like, but it can give you a sort of relief to not feel alone.

The awesome lady over at Thebloggess.com unfortunately can relate, as she struggles with Rheumatoid Arthritis herself. She is normally an awesomely hilarious woman. Full of life and exuberance. Blogging about a big metal chicken named Beyonce and design ideas like waterbeds for cats. She's awesome and I really admire her take on life, in spite of her circumstances. More people should be like her. This week, however, she's been under the weather, coping with, what we sufferers refer to as a flare. She was able to blog about it so accurately that I couldn't have written about one of my own flares better myself.

Her busy schedule doesn't allow for her to do guest posts, or I'd have her do a post for us. For some new perspective. She did however, suggest, I just link to her post, so you all can read it, too. So, go visit The Bloggess and check it out.

Then, if you need some laughs, stick around and stroll her site.  I think you'll be happy you did!

When My Body Revolts ... Yet Again

Sunday, August 21, 2011 0 Comments A+ a-

I've been dealing with some sort of daily ache or pain for so long now, that even when it's bad or excruciating, I just deal with it. I can mask how bad it really hurts. I've just learned how. I express that I'm having some pain, just so hubby knows, but I try to manage the rest alone. He deals with enough. Everyday. He doesn't need to be saddled with my pain while knowing he can't help. It's just better if he doesn't know, until it subsides, or until I can't handle it alone anymore.

While I try to be upbeat and accepting of my circumstances, sometimes it's hard.

While I know "it" is what "it" is, sometimes I still get angry.

While this is the first joint flare-up I've encountered in over a year, it still scares me to death.

While, it's only been one day, it still scares me to death.

One bad day can transport me back to 2004. It happens every single time. I wish it didn't. I wish I were stronger. Usually, I am. IN the panicky portion of a flare, I am not.

One day in bed because moving hurts too much scares the crap out of me.

I had a meltdown today. In bed. Alone. I didn't share with anyone. I knew it was just overreacting to the pain. The familiarity of being stuck in bed. Worried that it's the beginning of another cycle. A cycle where walking hurts. Laying in bed hurts. Rolling over hurts. My hair hurts. E-v-e-r-y-t-h-i-n-g hurts.

It's also on the heels of a week where ulcers on my hands are all but intolerable. My hands are so curled and bent that the knuckles hurt just from being. Just existing. Let alone doing anything with them.

It's amazing how much we take our hands and fingers for granted. I'm beyond tolerating them being the way they are. I have a consult with my hand surgeon on Nov 1. He wants to discuss straightening the fingers. Not straight as an arrow, but slightly curled. It will be permanent. Whatever angle he fuses them in will be forever. It will certainly relieve the knuckle pain. There won't be any knuckles. There won't be any more ulcers, probably. But, how functional will they be?

At this point, I'm so beyond wanting to deal with the knuckles and ulcers, I'd be ok with cutting them off just past the middle knuckle. I'm sure I could figure out how to function. It can't be any harder than this. Can it?

I know I've thrown out bionic fingers on here, but I really do wonder just how functional they would be? It's worth inquiring about, though.

So, combine a week plus of shitty shitty finger ulcers and a day of severe arthritic shoulder flare-up type pain and I'm a little freaked. I had a meltdown. Big one.

I'm tired. Tired of it always being something. I wasn't lying in my description when I said it was a roller coaster ride. I don't like roller coasters.

Here's to hoping I wake up without wanting to rip my arms off and beating someone with them. Here's to hoping for no skin flares with this .... I 'm not sure that my heart would appreciate the panic attack THAT would cause. Here's to hoping for less freaking out. Here's to hoping for some sleep, soon. Last but not least, here's to hoping for a better tomorrow, all around



How Did a Semi Get in My Bedroom?

Saturday, August 20, 2011 0 Comments A+ a-

While my handshave been annoying, painful and definitely slowing me down, I've still been somewhat functioning. That is to say, I've managed to haul my ass out of bed and do some little things around the house. Yes, the ulcers suck, but life has still been pretty ok.

Imagine my surprise when I woke to go to the bathroom this morning and my body immediately started screaming at me. Before I even sat up. My shoulders are throbbing and my hands feel like water balloons, filled to their bursting point. Just ready to explode. Like they would feel so much relief if that pressure was released.

Where did that come from? I haven't had a surprise attack like this in awhile. Honestly, I don't remember any more recent than the flare during our move, early last year.

I've bitching and moaning about my hands and their horrible state. That was enough. More than enough.

Hubby came and worked some magic for me. He rubbed my shoulders and my hands. It hurts, but in a good way. Seems to relieve some of the pressure. While he was rubbing my hand I asked him to ease up on my pinky, it seemed more tender than the others and I didn't know why. His response ... "it couldn't be the huge ass ulcer on your knuckle. I thought those were supposed to get better when we moved to warmer weather."

They would be better if I didn't use my hands. If I sat around and did nothing, there would be no pressure on sensitive spots and likely less ulcers. His response to that notion was that, apparently, I'm supposed to sit home and eat Bon Bons all day.

Who knew?

Regardless, looks like this beautiful Saturday, with hubby off work, is going to be spent in bed. With little, if any, movement. Yay! Just what I wanted to do after being cooped up all week with sore fingers.

I'm on a roll!

PIP Arthrodesis

Thursday, August 18, 2011 0 Comments A+ a-

Yeah, look that one up.  Essentially, they take the middle joint out of your finger.  They cut the joint out and fuse the two bones together and hold it together with a pin, until the bones bond.  Then, they just unscrew the bone out of the end of your finger.

It's not nearly as bad as it sounds.  Not to mention, it relieves the thin skin on the knuckles, then, you don't get ulcers.  You also don't bonk the knuckles on every single thing that you touch.

I've had it done once.  It looks like it's back on the table as another possibility for the near future.  I've reached my limit on acceptance and dealing with things the way they are.  It's time to take action and move forward.

Arthrodesis is not my first choice.  I'm intrigued and ready to become "The Bionic Woman" It seems amazing and wonderful to me!  Sure, there would be limitations to the functionality.  I don't need to be able to lift 100 pounds ... I just want to be able to lift a cup or a bottle.  I want to be able to work the remote with one hand.  Or to pick my nose.  So, I say, out with the old and in with the new.  Chop 'em off and lets go.

I'm sure the hand surgeon and the rheumy will not agree and will have alternate options.  That's fine, too.  A girl can dream, though, right?  I'm really ready for whatever isn't "this" ....

Now For Some Whining

Tuesday, August 16, 2011 0 Comments A+ a-

The two finger ulcers are still BAD. Sometimes, the shooting throbbing pain is hitting up close to an 8. But, it's not constant, so, at least there's that.

It's interesting how much I can tolerate the pain to get through the day. The coping mechanisms I've learned. Rubbing and squeezing the finger above the ulcer. Holding my breath and gritting my teeth through the "spasms" is another big daytime helper.

Unfortunately, though, these are in my "grab spots" so I touch them with everything I touch throughout the day.

At this moment, at 2 a.m., they feel great. The drugs are kicking in and I can go to sleep.

By 8, they'll start having dull throbbing episodes which will be interrupting my sleep.

By 11 and later, I'm going to wish I could have stayed in bed. There its cushiony and I don't have to touch anything that will cause pain.

By 1:30 when I get the car packed up, and have to pump gas for my trip to Orlando and back, I'll be just shy of tears and "needing" a Mt. Dew. (Yes, I plan to stop that horrible habit some day. Right now, it's my stress helper, as crappy as that is.)

So, by the time I get home tomorrow night, I'm likely to have had a meltdown somewhere in the day. Maybe more than one. I'll have wanted to use a hack-saw to cut off the rest of my fingers and I'll most definitely be happy to get home, into bed, with some pain relief. Maybe, by the time Wednesday rolls around, I will just stay home in bed. Safe and cushioned. Where I might just look into this a little more ....

Wouldn't THAT be awesome? And such a huge help!

Thank You (I think)

Tuesday, August 16, 2011 1 Comments A+ a-

Someone said to me today that they had loads of respect for me for what I endure just to get up everyday.

Wow.

I appreciate that compliment because it means that someone who I would not expect to understand, or even be aware of my situation, is aware and does understand. That's not something I typically come across. As many people point out ... a) I'm young b) I don't look sick and c) at my age I can't have aches and pains. In an odd way, it's nice to have someone that isn't in my inner circle and aware of my daily struggles, to "get it."

Then, as there always is with me, comes the flip side of that ... feeling like I must have let my guard down somewhere for someone not in the circle to make that observation. Have I whined too much? Have I been too vocal about my bad days? Complained too much about my crappy-ass hands? Do I need to start being more careful of what I say?

Here, in Sclero Scoop, I can whine, cry, bitch, and moan all I want. Why? For one of three reasons. 1) if you're reading this, you're in my inner circle and know who I am. I feel comfortable (enough) telling you my shitty days or 2) you have found this through a search or from another Sclero friend or sufferer and you can relate and understand my shitty days or 3) because that's what this blog is for. So I can let it all out without feeling like I'm asking for pity, sympathy, whatever. I'm just trying to get it all out.

Just a weird little conversation that's been stuck in my head for a few hours.

Ouch

Saturday, August 06, 2011 0 Comments A+ a-

I've been dealing with a lot of finger pain the past couple of weeks. If you've been following along, you know that.

I finally broke down and took the pain meds. I wasn't taking them every 4-6 hours like prescribed. I was holding off and getting by with one a day. I could manage most of the day and get through until the afternoon before the pain was unbearable.

It's just a couple of ulcers, but they seem to be pretty deep. The pain from these seems to irritate and aggravate my arthritic knuckles, just adding to the fun.

Like I said, the meds were helping. Then, a family emergency with my kids' biological mom required me to drive my son to Nashville, meet my daughter there, then act as cheauffer for 2 1/2 days, to make sure they could see her. 1500 miles in 3 days, does not allow for pain meds.

I managed to work through or avoid at least three pain induced melt downs. I held it together to make sure the kids got what they needed.

Let me tell you what, though, I wasn't home for 1/2 an hour before I was headed for some relief. Thankfully, I've never gained a dependence for pain killers, but, I am thankful too that their IS such an awesome piece of medical relief.

Now, if I can ever get through my pain management book, I won't need the meds anymore.

Wish me luck!