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.
WARNING: This blog may contain some scary descriptions and images. If you're a Scleroderma patient and want to read on, please do so with an open mind. Hopefully my experiences can help you, please feel free to poke around and use what you can!
Thursday, November 3, 2011
Wednesday, October 26, 2011
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.
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.
Tuesday, October 18, 2011
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.
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.
Monday, October 17, 2011
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.
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.
Sunday, September 4, 2011
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 thyroidwas 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.
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
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.
Saturday, September 3, 2011
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 ....
Damn.
So, this post serves as a mini vent/placeholder for me to come back to at a later date.
Until then ....
Friday, September 2, 2011
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!
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!
Saturday, August 27, 2011
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.
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.
Monday, August 22, 2011
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!
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!
Sunday, August 21, 2011
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
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
Saturday, August 20, 2011
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!
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!
Thursday, August 18, 2011
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" ....
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" ....
Tuesday, August 16, 2011
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!
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.
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.
Saturday, August 6, 2011
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!
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!
Friday, July 29, 2011
Blessings in Disguise
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.
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.
Thursday, July 28, 2011
The Thing About Pain Meds
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.
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.
Wednesday, July 27, 2011
Pain Tolerance
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.
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.
Monday, July 25, 2011
Let Me Clarify
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.
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.
Sunday, July 24, 2011
Waste of Time and Money
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!
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!
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