Healing

Thursday, December 29, 2011 0 Comments A+ a-

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

Monday, December 12, 2011 0 Comments A+ a-

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

Tuesday, November 29, 2011 0 Comments A+ a-

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

Friday, November 25, 2011 1 Comments A+ a-

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

Wednesday, November 09, 2011 0 Comments A+ a-

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

Thursday, November 03, 2011 1 Comments A+ a-

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

Wednesday, October 26, 2011 0 Comments A+ a-

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

Tuesday, October 18, 2011 0 Comments A+ a-

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

Monday, October 17, 2011 0 Comments A+ a-

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!

Sunday, September 04, 2011 2 Comments A+ a-

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

Saturday, September 03, 2011 0 Comments A+ a-

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

Friday, September 02, 2011 0 Comments A+ a-

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

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!

Blessings in Disguise

Friday, July 29, 2011 0 Comments A+ a-

I was talking earlier with a sclero friend about how not being able to have children turned out to be a blessing disguise.

Every flare type situation that I've had in the past year and a half have made me think the the same thing about being on disability. I often times struggle with the fact that I no longer work outside the home. For a paycheck. I do volunteer work, but most of that is from home, aside from the 5 or eo hours a week I volunteer outside the house.

Regardless, the point is, I don't work anymore. Sometimes I still struggle with that. Worry that I should have a job. That I should fight and find a "LoJo friendly job" that would accommodate all of the things I can't do.

Blah. Blah. Blah.

The past couple of days have served to be unpleasant reminders of how being on disability might not be so bad.

Being able to take the pain meds that knock me out. Staying home in my pjs. In bed. Not having to worry that I missed deadlines or let teammates down. Not having to worry about taking sick leave or vacation time. Or worrying if I have enough to cover if Ivey sick again later in the year.or trying to struggle through work because I'm too stubborn about all of those things.

Maybe being on disability is a blessing in disguise.

Maybe.

The Thing About Pain Meds

Thursday, July 28, 2011 0 Comments A+ a-

is that, while they do their job and stop the pain, they also knock me on my ass.

I took another med this morning when the pain was getting too bad again.  I slept sound for a few hours.

However, when I woke, I had to cancel yoga, reschedule my dentist appointment and spent the entire day in bed.  ENTIRE.  DAY.

I was foggy, groggy, and sleepy.  I dozed on and off all day.

When hubby got home from work at 3:30, I was zonked out, cross-ways in the bed.  Out cold.  Head almost hanging off my side.  Feet on hubby's pillow.

I certainly didn't lay down that way!

Oh well, the pain is still gone.  For now.  I could sleep on my head and not care as long as the throbbing is gone.

Pain Tolerance

Wednesday, July 27, 2011 0 Comments A+ a-

I wonder if, as I'm getting older, my pain tolerance is not what it once was. Or are the sores that much more painful?

Either way, as you can see from the previous few months posts, I've got a nice collection of digital ulcers/sores. I've been tolerating most of them "ok" They hurt. They suck. But, I've managed, like always.

In the past few weeks I have two new sores, on my finger tips, or in "touch spots" that are pretty tough to deal with. They have caused three or more full on melt-downs in less than two weeks. That's a LOT of melt downs for me.

As I'm writing this, I realized that there are a bazillion nerve endings in your fingertips, which would account for the higher sensitivity to the pain. So, I guess that answers my initial question.

Anyway, the pain has been bad. The melt downs have been bad. And frequent. I don't waste my time with OTC pain meds for my ulcers. It's a waste of time, money, and adds crap to my body. I already hate taking the medications I am on now. But they all DO something. I don't want to add other stuff if it's not going to DO anything.

So, I manage and tolerate the pain as best I can. Until I can't. Today, I couldn't. By this afternoon, my pain level was pretty high and on top of that, I was up most of the night with pain, so I was exhausted and easily pushed over the edge. Finally, after a meltdown from the pain and not being able to even touch a thing without making the pain worse, I succumbed and took the good drugs.

I hate taking them. Yes, they alleviate the pain, but they knock me out. I hate that cycle. However, as tired as I was, today, it was ok. The meds kicked in, the pain became tolerable and I slept.

I just wish there was another way. Have I mentioned, I hate drugs?

Last night, in my middle of the night melt down, I was researching. Trying to find another way. A better way. A med free way to deal with the pain.

I found a book with Buddhist insight and techniques for managing pain. Since, I'm an aspiring Buddhist, let's hope I can learn something useful and get somewhere with it.

Wish me luck. I'll report back if anything fruitful comes from it.

Let Me Clarify

Monday, July 25, 2011 0 Comments A+ a-

I realize I probably sound like an ungrateful complainer.

Maybe I am.  I don't mean to be.  My new cardiologist is nice enough.  He does a good job.  He's thorough.  He's nice.  He's keeping my heart from tiring out too early.

I think I sound like such a curmudgeon because while I know WHY I need the med and the constant check-ups with him .... ultimately, I'm still pissy about the whole idea.

Pissy that, I'm 34 and on heart meds.

THIRTY-FREAKIN'-FOUR!

HEART MEDS!

I'm certainly not the first.  Nor the last.  I'm just tired of being so young and having all this shit.

There.  I'm done with the whining.

For now.

Waste of Time and Money

Sunday, July 24, 2011 0 Comments A+ a-

While i understand the reasoning for the first follow-up visit after starting the new heart med ... let me tell you this:  it was a waste of time and money.

I was with the doctor for less than 15 minutes.  I was at the USF Health Center less than 45 minutes.  I wasn't even there long enough to be charged for parking.  That, I don't mind, but the rest could have been easily managed by a phone call or email.

Maybe I'm just too forward thinking.

The appointment was two weeks after I started the new med.  He listened to my heart.  Asked me a few questions about how I seemed to be tolerating the med.  Prescribed me the new dose and sent me on my way.  With a new appointment for one month.

We could have done all that over the phone and then he could have called my prescription into my pharmacy.

Saving him time to see other more important patients.  Saving me money on the visit and on gas.  Letting me sleep in.  Saving the planet from vehicle emissions and fuel usage.

Did I mention I get to go back in one month?

Yay!

The Little Blue Pill ...

Saturday, July 02, 2011 0 Comments A+ a-

No, not THAT little blue pill.  Get your mind out of the gutter!

My new heart med is blue.  I have no idea if it's helping.  I don't feel any different.  I guess that's a good thing.

Does that mean its working?  I hope so.

I DO believe it lowered my blood pressure a bit more.  I'm usually in upper 90s to low 100s for the top number.  Yesterday while I was getting my prescription filled for my sprained foot incident I checked my blood pressure and it was down to 86/65.

Woah.  That's low.  Now I need to keep an eye on it.  I'll be heading to see the cardiologist in about week for my follow-up, so, he'll check it all out.  Until then, I'm just gonna keep on, keepin' on.

Interrogation by Cardiologist

Tuesday, June 21, 2011 2 Comments A+ a-

The cardiologist appointment today went rather well.

Aside from feeling like I was interrogated.  You know the kind where the interrogator asks the same question repeatedly until they break you into giving them the "correct" answer.

The cardiologist had looked over my records that had been faxed from Baltimore and was looking over the history I had completed and kept asking me about my breathing.  Like 5-7 times.

I know that my tests and such indicate that I "should" be having certain symptoms (i.e. breathing difficulties) but I'm just not.  I was worried he was going to keep asking until I relented and said "YES!  OK?  YES!  I HAVE BREATHING DIFFICULTIES!  IS THAT WHAT YOU WANT TO HEAR?"

Finally, he gave up.

He did an ekg and gave me the prescription that "the man" wanted me to have and told me I have to come back in 2 weeks to make sure I'm handling the med ok, get another echo to see if the med is helping and increase the med to the new dose.

This med starts at a low dose and works up.  So, it sounds like a lot of 2 week visits in the near future.

As long as there's no water-boarding, I'm ok with that.

So, that's 2 new pills to the cocktail everyday.  So, here's a tally for anyone that's counting ... I'm a whopping 34 years old and I take reflux meds, steroids, thyroid replacement, immune suppressors, baby aspirin, meds for circulation, heart meds, and I'm supposed to take calcium & vit D to keep my bone loss in check.

Not that I'm complaining OR counting.  It's much less than the 20+ I once took.

Summer Colds

Friday, June 17, 2011 0 Comments A+ a-

I had a cold last week.  I still have it into this week.  It's mostly just that leftover junk that gets in your sinuses.

Last week, I was down for the count for about 7 days.  Bleh.  Two of those days, I literally, moved from the bed to the sofa and that was it.  I had the chills and had to sleep under my electric blanket for two nights.

My immune system did well and fought it off.  I was happy.

However, last night, I was in bed by 7:30.  Exhausted and with a sore throat.  This morning I feel ok-ish.

Hopefully it was just a fluke.

Time will tell.

Dread

Friday, June 10, 2011 1 Comments A+ a-

I found a new cardiologist.  My first appointment is set for Jun 21st.  Just a few weeks away.

While it will be nice to have a doctor close to home to work with, I dread starting over.   With a new physician.  Possibly one that has no Sclero experience.  There's no way to tell in advance.  It's a crap shoot, really.

I researched to find a good cardiology staff.  They selected the doctor.  Hopefully he's a good fit.  Hopefully I don't have to look for another one and start the whole process over.

It would be one thing if I had a clean bill of health and nothing to explain.  Wouldn't that be nice?  But then, I guess I wouldn't be seeing a cardiologist at the age of 34, now would I?

Hopefully, it all goes off without a hitch.

Elbows Too ...

Saturday, June 04, 2011 1 Comments A+ a-

Did I mention I get sores on my elbows too?  Yeah.  Fun.

They get just as nasty and achey as the knuckles.  They start getting pulled in and trying to heal together and it hurts.  Sometimes they hurt so bad, it's hard to bend or straighten the elbow.  Sometimes, they make the muscles around the area sore.



Sometimes, they start pulling SO bad, the only release, is to pull the scab off, just to release the pressure.  That's why the one on the right, in the picture, doesn't look as bad.  Because it's minus the big nasty scab.  I had to pull it off this morning at 0330, just so I could bend my arm to get comfortable to sleep. 

What the hell kind of plan is that?  Who knows, but it works.

Frustrated

Wednesday, June 01, 2011 2 Comments A+ a-

My knuckles have been VERY sore the past couple days.  Sometimes, excruciating.

On that pain scale of 1 - 10?  Who knows.  I suck with that damned thing.  I'll give them around a 5.  Maybe.

I haven't told anybody.  It's kind of a given, so I don't like to verbalize it, too much.

They just ache.  The pressure in the ulcers just hurts.  The scabby material, doing, whatever it is that it's doing, aches.  Sometimes it has shooting pains.  It wakes me in the night.  Rolling over and rubbing one on the blankets when I move, hurts.

If they get cold from the a/c, it hurts.

Anything touching them hurts.  Even water.

I want new hands.

I would like to just lock myself in a hole for, oh, a few months until they heal.  Yet, I don't want to not live my life.

The idea of moving bolsters tomorrow during yoga, makes me a little nauseous.  The idea of bumping them during riding therapy on Friday, makes me a little nauseous.  The idea of Cooper catching one with a tooth or toenail while he's playing, makes me a little nauseous.

The idea of sitting on the sidelines to avoid getting the ulcers, makes me a little nauseous.

I'm in a lose-lose battle on this one.  Damned if I do.  Damned if I don't.

Just plain, frustrated.

Ulcers Galore - STILL!

Sunday, May 29, 2011 1 Comments A+ a-

In a few hours, we're having a bbq.  Just a little get together with a friend.  Both the kids are here and the boy has his girlfriend over.

Not a bbq requiring a huge amount of prep work.

Regardless, after my shower and making deviled eggs, my ulcers are killing me.  Not to mention, I woke up feeling like I've got sausage fingers.  Bent sausage fingers.  It's an odd feeling.

Regardless, my ulcers, are, by far the worst.  It's the same complaint, all the time.  These damn ulcers.


Maybe one day they'll go away and I can be ulcer-pain-free.

May 2011 - 6 month check-ups

Saturday, May 28, 2011 2 Comments A+ a-

I made it to MD safely.  Surprisingly, I had a rental car that had good steering and an ok steering wheel.  The rest of the car left a lot to be desired for "crappy-ass hand" friendliness.  It's ok though, I survived.

Airport security was ok.  My system got me through without holding up the line.  I didn't get bumped and bonked like normal.

No meltdowns.

The cardiologist appointments went ok.

My arrhythmias (extra heartbeats) are still there.  There are a lot less of them and they are stable.  So, the electrophysiologist is happy with that and I don't need to see him again unless they change.

My regular cardiologist up and retired right before my appointments and the new cardiologist wasn't in on the day I was there.  So, there was a bit of a situation with the results of my echo.   Initially, without comparing it to my previous echos, it looked like there was a significant weakening of my heart.  If you based that echo against a normal, healthy person that would be something to worry about.  Which, is what initially happened.

After further review and comparing to my previous results, the change from last time is so minute that it's barely noticeable.  So, a teeny teeny tiny bit of new weakening from what's already there, but nothing to be overly concerned with.

Not that I was anyway.  It is what it is.  I don't let that stuff bother me anymore.  It's annoying.  It's frustrating.  It gets old.  But, I can't erase it.  What's gonna happen is gonna happen.  We just deal with it as it comes.

So, anyway, because of the minor change in the echo, I will now be adding a beta blocker to medicine cocktail.  To help my heart do its job.

Yay.  (sarcasm)  I was hoping to talk "the man" into dropping a med or two.  Instead, I have to keep them and add another one.  Twice a day.  Again ... yay.

Oh well.  The count goes from 7 a day to 9.  It could be worse.  I could be back up to the 21 or 23 I took back when.

"The man" is pleased with everything else though.  Well, except the 5 ulcers.  But, they are clean and not infected.  He says I look good.  I feel good.

He told me to keep on with my therapies, they are good to keep me moving.  So I don't lose what I've got.

Now though, I need to find an internist and a cardiologist in my area to add to my medical team.  Someone for him to work with.   He wants me to have someone close by to go to should I need it.  That's much easier than trying to hop a plane to Baltimore in an emergency.

Let the search begin!

Heading To See The Man

Tuesday, May 17, 2011 0 Comments A+ a-

I have appointments next week to go see the man at Hopkins.  It's time for check-ups.  The first 6 month check-ups since I've had this blasted disease.

I also see the cardiologist on this visit.  I'm lucky enough now, that I'm on a 6 month plan with both doctors.  I can schedule them at the same time and only have to make one trip to Baltimore.

I think I'm battling ulcers on just about every finger and both elbows now.  Dealing with a new puppy is not helpful in that arena, but he keeps me moving and on the go, which IS helpful.  Sort of.

My shoulders are achier in the mornings lately, but nothing to cry over.  They've certainly been worse.

So, overall, I expect 2 good visits with the men.

I'm not looking forward to doing this trip alone.  I'm flying.  Alone.  Did I mention that?  Airport security, plane seats belts, managing luggage, rental cars with slippery steering wheels and awful power steering .... I'm a little anxious.  Ok, maybe a lot.

Unfortunately, hubby had to cancel because of work.  It's going to be ok though.  I CAN do it.  I'm already prepared for some frustration.  Bonked knuckles.  Impatient travelers and TSA agents.

I CAN do this.  I WILL do this.  I'm packing light.  I'm not taking my laptop.  I have my Kindle and phone set up with apps to do everything web based that I "need" to do.  So, my carry on will be light.  No needed magazines or books or anything.  Just my camera, Kindle, phone, wallet, Cody, water bottle, and bottle opener.  Oh and my Snuggie.  I'm getting a new "travel steering cover"for my bag to use in the rental car.

I think I have my bases covered.

I can do this!

Wish me luck!

Nothing to Report

Tuesday, April 26, 2011 0 Comments A+ a-

Since there's not been a post in a month, I guess you can tell, it's pretty quiet in LoJo's Sclero world.

The warmer weather is a good thing.  Granted, the temperatures only dipped a bit here in Florida, it was enough to bring on Raynaud's, ulcers, and achey joints.

I faired through pretty well, in spite of all the ulcers.  They are still healing and will likely be around for at least another month.

It's been more of an emotional toll than anything else, in the past month.  It's sometimes hard to remember the things I used to be independent enough to do and know there's not a snowball's chance in hell I can do them alone now.  It has caused an occasional melt-down.  A pity party or two.

All is good, though.  I'm still able to enjoy a lot with the help of my awesome husband and great people that I DO have in my life.


Even these energetic 7 & 9 year olds are accommodating and understanding and made sure I was ok throughout our fun-filled days at Disney & Epcot.  I LOVE our friends!

6 Month check-ups are scheduled for a few weeks from now.  Hopefully everything remains smooth and even sailing.  I'm enjoying the lack of medical drama and just dealing with maintaining what's here!  Nothing new, please.

Is it bedtime yet?

Monday, March 28, 2011 0 Comments A+ a-

I'm exhausted again lately.  On Saturday night, I believe I was asleep by 11:30 and slept until 9:30 the next morning, then I dosed off 2 hrs later in the car on the way to the baseball game.  I even had to fight falling asleep on the way home from the game.

Today, I got to yoga late, so I didn't even take class.  I feel it's rude to interrupt everyone else in savasana, so I opted out.  I volunteered 2 hours at Guardian Ad Litem, ran some errands, went to  shelter meeting and was home by 8 p.m.  Here it is, 8:30 and I am ready for bed.  SO tired and exhausted, thinking about it almost makes me cry.

Coming down from months of good energy levels is always hard for me.  I should be used to it.  I've been tired for over 10 yrs.  Oddly, I'm never used to it.  The napping and the sleeping make me feel like I'm missing out on the fun stuff I should be doing.  Missing out on the living part of life.

Other than that, all is good!  Life is great and fun ... when I'm awake!

Nothing new

Monday, March 14, 2011 0 Comments A+ a-

It's been a month and there are no changes.  I still have my knuckle ulcers.


Everything with a circle is sore.  Some of them are really small and almost gone.  Not really causing any issues, except a dried scab getting caught on a shirt or a blanket.  The larger ones still have a ways to go to heal.

The two squares aren't sores, but spots where the skin is so tight and the finger is bent, that it seems as though the knuckle bones are going to start protruding through the skin.  Something I'll have to discuss with the man on my next visit.

I seem to be picking up on routine naps again.  I was hoping it was just a phase, but it seems that at least 3 days a week I have to go take a nap.  Sometimes as long as 2 hours!  I'm even back to falling asleep in the passenger seat of the car if we go anywhere.

On the whole, I feel pretty good.

I am frustrated that I don't seem to be building muscle back fast enough in my quads.  I'm not even sure it's returning at all.  I've been doing riding therapy for almost a year and still need help getting in the saddle.  I hope it's not something that's "lost forever" like the lost abilities of my hands.  If it is, I'll deal.  It's been this way since 2004, so I'm used to it.  I'm just hoping for more.  I'll keep working at it though and I'll see where it ends up.

I have found a bicycle that will hopefully work for me!  I'm very excited!  We have all of these beautiful shoreline paths along the bay and the ocean here that would be perfect to do some cycling along.  I've searched and searched online and found that bike and then I found a shop here in Tampa that has them.  They assemble and set it up just for you and you get free tune-ups for a year.  Now, hopefully they can change it so that the braking is done with the feet and not the hands and I'll be all set.

Wish me luck!

Ulcers Galore!

Wednesday, February 02, 2011 1 Comments A+ a-

One of the 3 on the left hand is almost healed.  Then it will just be sensitive for awhile.  The remaining two are still super sore.  But, with the one going away, at least I can "do" some things again.  I managed laundry yesterday.  Dishes, not so much.

There are essentially 3 on my right hand ...

Yep, index, middle, and ring finger.  Ugh.  Yes, that's also as far as my hand opens or closes.  It doesn't move much more than that position these days.  The left is about the same.

Those are the "easy" ulcers.  They're still mild.  They're not too deep yet.  Hopefully they stay that way.  When they get deep, the get more sensitive and take MUCH longer to heal.

So, aside from the large number of ulcers ... I'm sleeping really funky lately.  I'm having that issue falling asleep again.  When I finally do, I'm out.  I sleep fine then.  I sleep deep.  for at least 8 hours.

When I wake up, I'm still feeling exhausted, groggy and I'm slow to get moving.  Slow to work out the morning aches and stiffness.  Slower than normal.  My hands are sore, and feel puffy and swollen, like I'm wearing oven mitts or boxing gloves.

Once I'm up and finally moving, things are ok.  As ok as it gets and ok as long as I don't hit the gosh darn knuckles.

Status Quo

Thursday, January 27, 2011 0 Comments A+ a-

Not much change going on here.  5 ulcers are still present.  Healing slower than slow.  I wish there was a standard way to deal with them.  What works for easing pain and making them comfortable one time, does not necessarily work for the next ulcer.

I'm pushing through though.  I'm hating it, but doing what I have to.

I hate having to ask hubby for help with the things I had become so excited to once again handle on my own.  It feels like a major regression.  Definitely a blow to my ego and feeling of self sufficiency.

It's only temporary.  That's what I tell myself.  Unfortunately, temporary, in the world of digital ulcers can be months at a time.

I think my elbow is finally 99% healed.  For now.  It will surely break open again one day.  Hopefully later than sooner!

The restless nights last week triggered the 2 a.m. "crazy thoughts."  The thoughts about ... if I'm only 33 now and my body has turned into this ... what is going to happen in 5 years?  15?  20?  30?  30 more years of this?  What if I live into my 70s?  That's 40 more years!  FORTY!  And THIS is some of the easier stuff!  What if the bad stuff comes back?  Can I DO it?  Am I strong enough?

What about my poor hubby?  Yes, he takes care of me because he loves me ... but FORTY more years?  It seems so selfish to ask or expect of anyone.  Seems unfair.

The saying "that which does not kill us makes us stronger" is not entirely true.  Yes, I've grown.  I've done things I would never have imagined I could fight through or handle.  I continue to fight and struggle through whatever I need to in order to continue and I'm proud of myself for doing so.  But, I think on some level, each battle tires me out.  Makes me less able to deal with the next battle.  Makes me weaker.  My pain thresh hold is definitely less than it used to be.  My determination to struggle through something fo the satisfaction of being able to "do it on my own"is not nearly what it used to be.  The list goes on.

Today, I'm just tired.  I slept almost 10 hours last night.  Did nothing strenuous today and could have easily climbed into bed at 7 p.m.

Tomorrow is equine therapy.  Let's see what good things the day can bring.

Restless Nights

Wednesday, January 19, 2011 0 Comments A+ a-

I hate dreading going to bed. I like sleep. Its supposed to refresh and rejuvenate you.

The past few nights I've been restless. I can't get comfortable on my right side because there's no where comfortable to put my hand without irritating one sore or another.

If I try to get comfy on my left side, that only lasts about a minute. I have some unknown ache going on when I lay on the left side. Doesn't hurt during the day. Just at night when I lay on it.

So, now I find myself getting anxious at bedtime. Anticipating a night of tossing and turning and uncomfortableness.

It reminds me of sleepless nights before Ambien.

I do have a couple emergency Ambien pills left. Just in case. I'll do all I can to avoid using them though. I wan to keep my meds list to a minimum. Only taking the ones I HAVE to take.

Luckily, I don't have to get up early for a job. THAT'S a saving grace!
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One of THOSE days

Friday, January 14, 2011 1 Comments A+ a-

Apparently, I was having too long of a run of great luck.  As "great" as it can be with Scleroderma.

That run has since ended.

It seems sores are like magnets.  They are just drawn to anything that will not feel good.  Car doors.  Jeans.  Counters.  Doors.  Drawers.  Counter tops.  Counter edges.  You name it.  The list goes on.

I haven't done dishes, the cat boxes, or completed laundry by myself in weeks.  No worries, hubby and the boy have been helping, so it's not like those things are spilling over.  It's just that the extended time in the water to rinse, or banging the sores on the dishwasher baskets or prongs, or not having a good grip and sliding my fingers off the edges of things ... they're just not worth the pain and agony.  Not worth the tears, meltdowns and tantrums.  Because, honestly, when something hits a sore and makes it hurt badly enough that I cry or curse out loud, I DO have 33 year old tantrums.  I throw things.  Not breakable things and not AT anyone.  But, I have been known to curse out loud, "growl" and then chuck a Glad bowl on the floor before walking away to go cry.

The handle of the cat box scoop hurts.

Grabbing the laundry, like jeans, pants, anything with zippers or buttons hurt my sore fingers.  And, please, don't let me whack a sore elbow on the washer or dryer!  That's a whole 'nother story.

Am I proud that my reactions are down to tantrums?  No.  But, it's my coping mechanism.

I'm just not strong enough or rational enough in THAT level of pain to do anything else.

So, within 15 minutes, I had 2 of those this morning.  TWO!  And a bunch of little ones to follow.  It's easy to contemplate going back in the bedroom, closing the blinds, putting my pajamas back on and climbing back into bed for the rest of that day.  Or until the ulcers heal.  Not necessarily because I'm depressed, but because it's safe there.  There's nothing to hurt myself on if I'm safely tucked away in my bed.  Well, except the remote control, the edges of my cell phone, a magazine or a book, or my laptop, or .... or ....  or ....

But, life goes on and I have things to do and to take care of.  Commitments, however few and minor, to uphold.  A life that I want to live.

It's currently 38 degrees here.  THAT does not help.  31 when I awoke this morning.  Not much better tomorrow.

I had to cancel riding therapy for tomorrow because it's too cold to be outside that long in.

So, today is just one of THOSE days.  Another one of the ones I hate.  It's more frustrating because it's not something I can change.  For most things, I can "choose" to react a certain way and to "choose" to have a certain kind of day, regardless of the crappiness going on around me.

It's another thing to be that positive about pain.

Alas, I hate whining, so I'm done now.

Here's to hoping tomorrow has something better in store.

Monday, January 10, 2011 0 Comments A+ a-

I've been tired a lot lately.  Between having a cold (which I fought off with no meds), the now 4 sores, and my schedule, I've been pooped.  Exhausted.  Taking daily naps again of at least an hour long.  Sometimes longer.

I've cut my schedule back a bit.  I'm trying not to take on more than 1 scheduled thing a day.  We'll see how that works.  I got over zealous and took on too much.

The sores on my hands are a chore to deal with.  Both physically because they are painful and mentally because it's just exhausting to be sure not to bump them on things and then to deal with the excruciating pain and meltdowns that follow when I DO bump them on things.  A good day can be completely changed in an instant by rubbing or bumping an ulcer on something.  I can turn into a colossal bitch like someone flipping a switch.  As much as I want to be zen and chill, that pain overrides any rational, conscious thought process.

Yoga continues to be helpful for my large joints.  It's slow and the progress is sometimes so tiny that only I can sense it.  It's still a good workout for the rest of my body.  In a way that is manageable for my abilities.  I have the sweetest yoga teacher.  She teaches and entire yoga class, but always makes sure to check on me to make sure that I'm ok with the postures we're working through.  She is great!  Yoga continues to strengthen muscles and improve joint mobility, even if only a little at a time.   The calm, serene nature of the class and the ending "meditation" are great for my mental health.  When I left for class this morning I was frazzled.  I had bonked my hands and then had a bloody nose, starting my day off in pain and cranky.  I got to class late and almost didn't go in because I hate disrupting other peoples' practice.  I went in anyway.  I'm glad I did.  I needed it.  It put me back on the right path for the day.

A massage added to today's therapy was much needed.  My massage therapist rocks.  Wait, have I said that before?  LOL!  She's so conscious of my limitations and is so good at pushing as far as is comfortable for me, without ever going beyond that.  She is another gem in my life.

So, there you have it.  "You take the good, you take the bad and there you have ... the facts of my life" ... today.

I've been tired for 13 yrs!

Thursday, January 06, 2011 0 Comments A+ a-

I was out of the house for less than 8 hours today and I'm exhausted.  I've been tired a lot for the past couple of weeks.

I've been tired 90% of the time for the last 13 years.  I was hoping that one day it would go away.  Guess not!

It's so sad to me that 8 hours can wear me down so quickly.  A measly 8 hours.

Geesh!

One more day

Tuesday, January 04, 2011 0 Comments A+ a-

Today is one of those days where it feels like I can't make it through one more day.  The thought of touching ANYTHING makes me wince.

My fingers hurt.  They are just tired and they just hurt.  Every package from the store, every bowl with an easy open lid, the edge of a straw, the little grippy ribs on the top of the milk, the tongue on my shoes, the elastic on my yoga pants, even the salt on a cracker ... every single item I've touched today has some sort of an edge that hurts.
I don't even want to think about trying to make myself dinner tonight.

Thank goodness hubby went to the grocery store with me this a.m.  Otherwise, I'm sure I'd have had a meltdown or two before I was done.  As it is, I banged my pinky sore on the cart at the checkout.  At home, I'd allow myself to use a curse word and yell in pain.  The yelling and "letting it out" really helps.  At the store I don't want to scare the crap out of people or make a scene.  General population, doesn't understand that "banging a little ole knuckle"is actually excruciating and throbs and they don't understand the yelling, or the tears, or any of that.  So, I hold my breathe and do a mental groan to get through.

The 2 sores I have are just a huge pain and nuisance and of course on the 2 places I need to use to get anything done.  Avoiding them because of the pain, is a chore and has ... yep, you guessed, triggered sore #3.   On the "back-up" spot that I use to get anything done.

It even hurts to wipe my tooshie!  Yep, that's an image to share, but I did warn that it wasn't always going to be pretty at Sclero Scoop.  No sugar-coating here.

Alas, I know this too shall pass.  Just as it has every other time.  It's just one of those days.  And I don't like these days.

Scleroderma's not SO bad

Sunday, January 02, 2011 0 Comments A+ a-

No, it's not a "treat" I'm happy to be stuck with for the next *gulp* 30-40 (if I'm "lucky") years.  It's a drain on me and a struggle, to say the least.  It has destroyed some of my hopes and dreams and some of my abilities.  Some days, it down right sucks.  

In all of it though, it has brought me some great gifts.  I've had my mid-life crisis in my 20s and I feel that I appreciate life and try to find the positive in everything.

Those destroyed hopes and dreams?  I've let them go.  I've realized maybe it was for the best.  Does it still hurt from time to time?  Hell yes.  But, that is life.  Suck it up and drive on.  Now, I've got new hopes and dreams.

It has made me realize that even though I have it bad, there's always someone who has something worse.

It has made me realize that life is fleeting and wasting time on being caught up and emotional over things that I can not control, is just that - a waste of time.  Yes, I can take a moment to recognize whatever has happened.  Even wallow in the sorrow and sadness of it.  But just for a moment.  Then, wipe away the tears and suck it up and drive on.

It has given me the ability to let some friendships fade and give others the ability to shine.  It's given me the ability to accept that those faded friendships weren't bad and they don't have to be gone, but that I don't have to be responsible for making them last.  I used to think I did.  If so and so didn't check in after x amount of time, well, the good friend in me had better tow the line and make the contact.  BULLSHIT!
don't have to make all the effort.  Some of the effort, yes.  Not all.

People really do grow apart.  It's ... just a part of life.

If I look at it like that, Scleroderma might suck, but it's not SOOOO bad and I'm OK with that.