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.
Saturday, July 2, 2011
Tuesday, June 21, 2011
Interrogation by Cardiologist
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.
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.
Friday, June 17, 2011
Summer Colds
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.
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.
Friday, June 10, 2011
Dread
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.
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.
Saturday, June 4, 2011
Elbows Too ...
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.
Wednesday, June 1, 2011
Frustrated
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.
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.
Sunday, May 29, 2011
Ulcers Galore - STILL!
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.
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.
Saturday, May 28, 2011
May 2011 - 6 month check-ups
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!
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!
Tuesday, May 17, 2011
Heading To See The Man
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!
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!
Tuesday, April 26, 2011
Nothing to Report
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.
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.
Monday, March 28, 2011
Is it bedtime yet?
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!
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!
Monday, March 14, 2011
Nothing new
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!
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!
Wednesday, February 2, 2011
Ulcers Galore!
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.
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.
Thursday, January 27, 2011
Status Quo
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.
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.
Wednesday, January 19, 2011
Restless Nights
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!
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!
Published with Blogger-droid v1.6.5
Friday, January 14, 2011
One of THOSE days
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.
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
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 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.
Thursday, January 6, 2011
I've been tired for 13 yrs!
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!
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!
Tuesday, January 4, 2011
One more day
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.
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.
Sunday, January 2, 2011
Scleroderma's not SO bad
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!
I 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.
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!
I 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.
Subscribe to:
Posts (Atom)