Healing

It's been three weeks since surgery. Four left before the pins come out. The stitches came out last week. The scabs on the incisions are almost completely healed.

I don't wear my splint at home. Only when we go out. Just to make sure everything stays protected.

The healing process of seven weeks seems long and daunting. I have plenty to keep me busy in the way of magazines, books (both on my iPad, of course), tv, movies, games, fur-babies and naps. Yes, naps. I still find myself taking a nap most afternoons. Sometimes two.

You'd think after all these years, I'd be used to the napping. I'm guessing, since it's been this long and I'm not used to it, that, maybe I never will.

Oh well, this seven weeks of healing time is perfect for napping.... It's not like I have a ton else going on!

Triple Arthrodesis

Surgery is over. We're back in Tampa. It has been a quiet weekend. I've spent it watching tv, researching, and sleeping. I've come up with plenty of ideas for things I want to make. Lots of projects to work on .... In 7 weeks or more, when my right hand isn't essentially useless. As much as I'd like to say I can figure out a way to do anything I need to and continue on as if nothing has happened, that's just not the case. Fortunately, I've planned to do nothing until the end of January when these pins come out and this splint comes off. Even then, there's going to be a period of awkward clumsiness as I learn how my magic new fingers work.

In the meantime, I'll be catching up on some reading!

The experience was pretty pleasant from the get go. They didn't give me a hassle about hubby tagging along to help me change into my awesome hospital wardrobe. The nurse was able to get my IV in on the first try.

From what I understand, the surgery went off without a hitch. There may have been one mall issue with compromised circulation in one finger, but the doc was able to go back in and fix it right up.

I was in my own room pretty quickly and able to spend the night with no roommate. Hubby and my friends were able to hang out all day and I was relatively pain free until late the night of surgery.

Then, the pain came on like a freight train and I had to use the pain IV every 15 mins or so. When I wasn't doing that, I was trekking to the restroom or the nurses were checking my vitals. Needless to say, it was a sleepless night. Then in the morning, all the pain meds I had been pumping throughout the night, made me nauseous and vomit.

Really, that was the worst of it though. By the time I got back to our hotel and was able to take my first pain pill, things were pretty much under control. The pain has not been predictable. Sometimes I can go up to 7 hours pain free. Other times, it's as little as 3 hours. It's all been fairly mild though. I won't say it hasn't hurt, but it's nothing to cry or freak myself over.

So, what DID they do? They go in and "cut" away all of the calcified, damaged knuckle until they get to clean, undamaged bone and then they fuse the bones together with a screw going lengthwise through both of the bones and sticking out of my finger just above the nailed. The pin is then bent and has a little ball on the end -all to put the pin in a position so that it won't get caught or bonked until its healed. They cut out any knuckle ulcers I was having and removed and thinned Scleroderma skin and stitched me back up. Then, in 7 weeks, the pin will be pulled out.

I will now have "straight" fingers instead of bent ones. Before I couldn't straighten my fingers, now I can't bend them in the middle. They still bend at my hand and my little joint is still bendable.

Will it be worth it? Will it be too much of a struggle? Who's to say? Not having 90 degree angled fingers to hit on everything WILL be worth it. Not getting ulcers on my knuckles that last months on end WILL be worth it. Not having aches those joints just because they are there, WILL be worth it. The pluses FAR outway the minuses.

I'll adjust. And I'm OK with that.

Stick A Fork in Me

Travel is always awesome. Always.

By the end of every trip, I end up worrying, though, that pushing my body this hard is a bad idea. I always know I'll pay for it for at least a couple of days. I prepare myself for that.

The man always says to keep moving. To do what I can. When I can. Rest when I need to.

So, I do. I do all of that. At home in the normal routine of life I do my daily things, get my PT in each week and try not to overdo it.

Apparently I save the overdoing it for travel. It's sad, though, because the overdoing it, really isn't DOING that much at all. In my mind anyway. Because I still think I should be able to do anything I could before. Even though my body knows I can't. My mind catches up with that later, when the aches and pains creep in.

At the end of it all, I ALWAYS have to thank my hubby. I wouldn't get to experience half of what I do if it weren't for him. He really does do all the heavy lifting. Literally. He pulls me up and down on things I could never maneuver alone, he keeps me steady, on my feet and not on my ass on the ground. He drove the ATV so I could experience some serious mud and fun in the countryside of PR. He lowers my butt onto the sand and hoists me back off my towel, so I can enjoy taking in some beach time. He drives to places most people walk to, in order to save my hips. And, he knows when to call it quits because I'm too stubborn to do it myself.

He knows when to call it quits and I don't. How is that? Because, he's never wrong. Every time I deny what he says and make him keep going, I REALLY pay for it later. How IS it that he knows and I don't?

Am I being reckless or just pushing that line? I guess if it doesn't make things worse. And if it does, there's nobody to blame and no turning back. Right?

Thank goodness for taking it easy after the fact and heating pads ... I'll be needing them both!

Un-recovered Muscles

Before, during, and shortly after the big flare of 2004, I lost a lot of muscle strength and ability in my quads. I can no longer squat. I can no longer use my legs alonr to climb things that are higher than a normal set height. I use a mounting block and my instructor's help to get on Jazz every week for my equestrian therapy. I've been doing yoga and riding therapy for a year. While I've seen some minor improvement, it's not back what it used to be. I still manage. I just do so slower and with breaks as needed.

Today, however, we worked those muscles (and my glutes) to the max. We're in Puerto Rico for a few days over the Thanksgiving holiday.

 We went down in an awesome cave. The walk back out, was a good little workout to get the day started. Then we went to the world's largest radio telescope. Guess what? You have to climb a rather steep hill to get there. I made it, but we went at a snails pace and I rested a few times along the way. My heart was certainly pumping when I got to the top and you could feel those extra beats today for sure!

On our way to find dinner ... We stumbled on a lighthouse. More climbing.

Oh and our apartment is up four flights of stairs because the elevator is broken.

My quads and glutes are quite tired. My hips, too. Needless to say, tomorrow will be our planned down day.  If I can get down the stairs to the car, we're going to the beach and doing nothing for the day.

If we've learned nothing else from my time with this disease, we have learned to plan down days amongst all the activity.

I'm OK with that.

Making Sense of it All

At the urging of "the man" I had my first appointment with an internist her in Tampa yesterday.  I think I like her.  Notice I said, "think."  She's got a great personality and is into the more natural way of treating things, rather than dumping a bunch of drugs and medications on me.

Which, I like.

As much as I love modern medicine because it DOES help keep me going and make me feel better, I often times read the drug warnings and side effects and think to myself ... "yes, it's going to help abc, but will it then cause xyz?"

After reading about the Paleo/Primal diet and the research that shows that cavemen and the currently living hunter-gatherers have no diseases, THAT definitely makes me do a lot more thinking.  I know that cavemen lived shorter lives, but the big thing sticking in my head is "no diseases."  No cancers, autoimmune, diabetes, heart disease, high cholesterol, high blood pressure, etc.  Couple that with the fact that we know that a number of diseases can be prevented or treated by changing your diet ... again, now I'm doing more thinking.

I don't refer to it as a diet, if I can because, these days, diet is taken to mean weight-loss plan, and not the dictionary definition of "The kinds of food that a person, animal, or community habitually eats." It's so much more than a 2011 term of diet.  It really is a habit or way of life.

So, we've started eating mostly Paleo/Primal at home.  Paleo/Primal in the 21st Century.  As in, I buy my food at the grocery store, farmer's market, or from the farm, I cook my meat, steam veggies, use seasonings, etc.  I don't have to kill my food and eat it bland and raw.  Notice, I also said at home.  We go out to eat approximately once a week and may indulge in bread, pasta, mashed potatoes, etc.  The statistics say that if you can eat no more than three meals a week that are "non-Paleo" you'll still see the health benefits.

We don't eat anything processed at home.  Or minimally processed, rather.  We eat no grains, rice, potatoes, corn, pasta or legumes.  The "processed" foods I DO buy are frozen veggies & fruit, canned tomatoes (no salt added), canned fruit (in fruit juice) and of course, the meat is "processed."  On Paleo/Primal you're supposed to cut dairy out, as well.  That's just not going to happen here.  We don't go "hog wild" but I still enjoy cheese, sour cream, and greek yogurt.  We use coconut or almond milk.  We're not perfect at following the diet 100%, mind you.  I still enjoy 12 oz. of Barq's or A&W a day and sometimes I have a Mike's or a glass of wine, but then I try to off-set that with 70ish oz of water.  And, actually, wine is allowed on the eating plan.

So, what's my point?  The point is, I honestly feel better.  My reflux is better.  MUCH better.  I still take the Nexium, but, often times before, even with the Nexium, I'd wake up in the middle of the night with BAD, BAD reflux.

My stomach is also better, in general.  Not as grumbly and like there is an alien or Gremlin in there trying to get out.  Now, for some TMI ... my bowel movements are better, too!  I won't go into detail, just trust me when I say they are 100 times better.

Changing our diet has had this kind of effect, what other natural things can I do for my body that might help my disease and my quality of life, while reducing the chemicals and manufactured meds that I have to take?

This is the stuff the new internist is into.  This is the stuff that I have to make sense of.  How much of it do I believe is successful?  How much of it is junk medicine?

I guess, time will tell!

Post Appt Update

All is well!  The man is pleased with how I'm doing.  The rash around my eyes is likely eczema, which, while a pain in the ass, is FAR better than the alternative.  He gave me a script for a cream and we'll see how that works.

Otherwise, all is good.

The hand surgeon was just a quick appointment to make sure we're all on the same page and to get the ball rolling.  Rolling, it is!  December 7 is the big day when they will straighten the last 3 fingers on my right hand.  All at once.

Then, it's 6 weeks in a splint for recovery and hopefully, I'll be good as new!  Well, as good as new as I can get.

Wish me luck.

Adding to the List

As if Scleroderma and it's plethora of issues and complications, weren't enough to deal with, it now looks like we might be adding another to the list.

Another "my body hates me, Sclero related, autoimmune disease" called dermatomyositis.  It's just a maybe, so, do't be alarmed.  I'm not.  I'm annoyed, but other than that, I'm really not phased.

I've had what I thought was a shit-tastic case of acne for the past 2 weeks.  Even on my eyes.  I thought it was odd.  I've never had bad acne.  Even as a teenager.  I've been fortunate, through everything to have a great complexion.

This week I have an upper respiratory infection and when I went to get it checked out, just to be safe, the doctore noted my skin issues and diagnosed them as a rash and that he thinks its dermatomyositis - or at least Scleroderma related.  He even through out how similar it looks to the rash that patients with Lupus experience.

So, really, who knows.  He was leaning mor towards the myositis, but he's not a specialist.  so, we'll just wait and see what the man has to say about it when we see him next week.

Reservations

November 1st are my 6 month check-ups at Hopkins. I'll see the rheumatologist and most likely have to have a PFT, which I hate. They're just a necessary evil that's a pain in the butt. I don't complain though, that's a test that helps keep Sclero progression in check. All-in-all, none of that bothers me. It is what it is. Aside from the one flare a couple months ago, the fatigue, and damn ulcers, I really am doing great! Those are just so much of my daily life now, that we just make sure they're not out of control and move on. Sometimes, it's about the big picture. The sum of all the parts.

At least most of the time. The ulcers and bent fingers are just more than I foresee myself dealing with for the next 30 years without a decrease in my quality of life. A decrease in my independence. And, well, without going bat-shit crazy. So, I have an appointment with my hand surgeon. He's awesome. He saved my right ring finger from needing to be amputated. He straightened my right pinky, decreasing "bonking" and in turn, no more ulcers on that one. He also amputated my left index finger. At my request. Understanding my reasoning and not treating me like I was crazy.

Now, I'm going to him in hopes of straightening ALL of my fingers, to some degree. By straight, I don't mean, pointing at you straight. They'll likely all end up permanently curved. To what degree, I don't know. Just something better than the permanent fists I'm sporting right now. The middle knuckles will likely be removed and the finger bones fused together (). My other idea is to amputate all my fingers, except my thumbs and get bionic ones. Seriously. There's a company that has bionic fingers. See my older blog posts to check it out. My concern is that the technology isn't what I'd like it to be yet, and I'd end up with really hard to use stubby hands and ZERO functional fingers.

Initially, my idea for this wasn't scary. It was more of a "this shit's broken and here's how we can fix it" approach. Now, the reality is sinking in that, my hands have progressed this way over time. I've learned to adapt slowly. If I do this sort of surgery, it will likely be a hand at a time. I'm going to have to learn things ALL over again. In a hurry.

Granted, there will be no more knuckle ulcers, I'll be able to wear gloves again, hold a glass, etc, but, what things WON'T I be able to do? The list of possibilities swirling in my head are endless and I'm having reservations, but what else is there to do? Cuz, THIS isn't cutting it anymore.

And, I'm NOT ok with that.

Means to an End

I've not posted in a month.  Sorry.  Nothing new to write about, really.  It's been a month of the same.  Sleepless nights, sore ulcers and some aches and pains.  All the norm and stuff I feel I repeatedly complain about.  I'm tired of feeling like all I do is complain.

Today, I have nothing to complain about.

I tried acupuncture for the first time last week.  I have no idea if it's going to do anything, but what do I have to lose?  Except whatever it costs me.  And really, how's that any different than paying for medicines that don't work?  If nothing else, I can say I tried and that I made new friends.  The acupuncturist is a GREAT lady and I am already better for just knowing her.

My sleep has still been off for the last month.  A lot of sleepless nights, filled with "what is my purpose" and "what happens when we die" conversations with myself at 2 a.m.  So, this weekend, I decided to try some melatonin.  I'm either out of my mind or the stuff works!  I slept great the last 2 nights.

Today, I had my echo and there is no change since the last one.  So, the meds are working and keeping my heart happy.  I was having a lot of extra beats today, but that's not new for me.  I don't have to go back for 6 months.  My new cardiologist here in FL is retiring.  I've only been going to him for just a few months and he's leaving.  Which is fine.  I found an internist here that I need to start seeing and she happens to specialize in women's heart disease.  So, I was going to transfer to her if she and I work out well at my first appointment, anyway.

So, finally, things might be falling in to place.  I'm building my medical team here in FL for my day to, frequent needs and then reaching back to Baltimore to my awesome, Scleroderma specialist and team there as necessary and to keep things mainstreamed - for me.

I'm OK with that.

Your Body is Talking. Shut Up and Listen!

Well, it's 2 a.m. and while I'd love to be drifting off to dream, something I ate for dinner is fighting back. Have you seen those Tums commercials where the person is trying to eat and their food keeps smacking them in the face? Yeah, that's been my night. I've taken my Nexium, my emergency heartburn meds AND 4 Tums. All to no avail. I don't want to lay down and run the risk of choking on any reflux, so until I feel assured it's safe, I'll be up for awhile.

Which provides a perfect time to re-write last night's post. It went a little like this ...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I've been exhausted and fatigued a lot over the past couple of months. It's not fun.

I have been hearing a lot of other sufferers having difficulty coping with fatigue and exhaustion, as well. it makes them question themselves. It causes depression. Which,in turn, stresses your body out. Stress makes the condition worse. The condition gets worse, so does the fatigue. See the vicious cycle here?

I understand the depression. I understand needing a nap every afternoon, because you honestly, physically are unable to go on without one. I know how pissy that can make a person. I've had those "everyone else my age doesn't need an afternoon nap, I shouldn't either....I must be lazy" thoughts. I've been struggling with them and this cycle since my late teens when my thyroid was running rampant had shit the bed and almost landed me in a coma.

I have come to some realizations about this all, that I'm going to share with you. I want you to really consider what I'm saying. Autoimmune sufferer, or not. Think about it. If it makes sense ... DO IT!

We, Americans as a whole, have become huge over achievers. Big, "I have to be at the head of the pack-ers". We think we have to be the head of our department at work. We have to be able to fit some kick ass workout into our schedule so we have abs of steel. We have to do all of this, while trying to figure out how to retire early, so we can enjoy life.

If something gets in the way of any of that, society tells us we're being lazy. We tell ourselves, we're being lazy. If someone doesn't have the drive, or desire to be a doctor, or head the next great world saving company ... they are lazy. If they don't work 8-10 hour days, play super parent, and keep a spotless house, they are lazy.

We have this so ingrained in who we are these days, that, when our bodies actually speak to us and say "hey, I'm exhausted. I need some downtime" we get mad. We question our bodies. We call ourselves lazy.

Laziness is defined as a lack of desire to expend effort. In my mind, lazy is a conscious effort. Something you intentionally think about. For example, making the conscious decision to stay in my pjs all day and watch a Criminal Minds marathon, might be more along the lines of lazy. And, not necessarily a bad thing once in awhile, mind you.

Taking a nap because your body hurts and is physically tired is not lazy. It's listening.

Our bodies aren't designed to be lazy. They are designed to survive until survival is impossible. They are designed to do whatever they can to achieve that survival. When we get cold, our body starts shutting down blood supply to our extremities to protect the organs in the core and insure survival. If we can, we listen to our bodies in this scenario and put onward clothes, or go warm up.

So, why is it, that when our bodies say they're tired, we either ignore and try to push through, or we throw a fit and get all pissy about it?

Next time your body asks you for a break, be kind and give it. Take that nap. Don't grumble about it. Enjoy that your body is communicating with you and trying to help you survive. Enjoy your naps. Let them be welcome reminders to slow down. Did I mention to enjoy a nap?

Then, the rest of the time, do what you can, when you can. If fatigue pops back up. Oh well. So be it.

I suggest stepping away from the over achieving way of life. Start enjoying the stuff you were saving until later. What if there is no later? What's that rushing around, over-achieving, body ignoring, conquer the world mentality going to get you if its all gone tomorrow?

Enjoy your life. Be a good person. Be present in your life. Live like you would if today were your last day. Live like you were dying.

I can almost guarantee your body will thank you for it.

And YOU will be OK with that.

Well, That Bites

I just drafted an awesome post, but when I attempted to preview it, it is gone. Poof. Deleted. No draft was autosaved.

Damn.

So, this post serves as a mini vent/placeholder for me to come back to at a later date.

Until then ....

August Cardiologist

Just like last month, this month's cardiologist appointment was uneventful.

The only exciting news is that my bp was so low that the electronic machine couldn't read it. That's not unusual for me. However, it did get a pulse-ox reading. That IS unusual. Those things NEVER work on me. In surgeries, I end up with a baby pulse-ox strip stuck on my forehead. Nothing is ever run-of-the-mill for me.

So, as I said, the machine couldn't get a bp. The nurse couldn't hear it well enough to get one either. Instead, the 70 +/- doctor had to take it. He said it was low, but it should be. It was low before beta blockers. They make it even lower. 

After the usual interrogation of "are you experiencing any dizziness? Lightheadedness? Fainting spells?" and confirming I wasn't hiding anything from him, he determined all is good to go. Keep an eye out for any of those symptoms. Call immediately if they arise. Come back next month for your echo.

I was in and out of his office so quickly that I didn't even have to pay for parking.

 I'm OK with that!

Coming Through the Other Side

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

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

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?

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

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

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)

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

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!