I've been very busy with a new adventure. I've just opened an Etsy shop and am having a great time interacting with other artists/craftspeople. I've only had one sale, so I haven't realized a lot of success yet, but I have confidence. I've been trying to fill up my shop and I have so many ideas.
It has been hard on my poor hands with all the new crafting activity, but overall I think it has been a great benefit. Since I gave up my music-making, I haven't had anything this fulfilling for several years. It is nice to have my own "business" going. I can run things as I want and pursue my own vision. I have to say thank you to my beautiful daughter for suggesting I do this.
I hope you will visit my shop and see what I've been up to. I have been listing lots of simple things to fill up the shop. In the future there will be lots more "creative" stuff there. I have listed iPod/iPhone cases, medicine bags, amulet bags and lots of simple dangle earrings.
The address is: http://www.etsy.com/shop/everybeadofmyart
Monday, April 4, 2011
Wednesday, February 16, 2011
More of the same with a slice of something new
Even when you think you are used to Rheumatoid Arthritis, and know your own body, they play sneaky little tricks on you. Though I've had five years of experience with this disease, I've struggled recently with a new problem and lots of the same old ones.
I decided to try again to taper my prednisone again. I knew, from my last attempt, that I should try to lower my dose by half a mg, and lower it every few weeks. I started my new dose and in a matter of a week, the heel of my left foot went completely numb. Over the last few weeks, my ankles had been my RA battlefield. They hurt all the time. They hadn't been swollen every day, but I knew that sometimes swelling isn't obvious. Yesterday they were noticeably swollen, and the numbness had extended to the top of my foot.
I gave up my prednisone taper today and bumped up to a higher than normal dose. I thought I'd feel much better today, but everything hurts. My ankles (and fingers and elbows) are swollen, and my foot is still numb. I'm going to continue the higher dose for a few days and go back to my old "prescribed" dose when I'm doing better.
I guess my rheumatologist is right and I need a new DMARD to get this disease under control. I hate taking all these drugs. I wonder if they are really doing anything at all (except the prednisone). I know that my toes are not all pointing in the right direction. I need a new thumb joint, and a bunionectomy. And, what is going on inside these swollen, painful joints. Will there be more joint replacements to come?
I don't want to deal with BOTH the damage this disease does to your body and the effects of the crazy drugs you have to take to live with it. If I could find a drug that would stop the damage, I'd want it bad. But, as I mentioned, I've had this disease for five years and am still trying (along with a good team of doctors) to find the right treatment for me.
Things aren't all gloomy, and I'm glad. I have a job that I love, even though it can be hard and stressful at times (well, maybe most of the time). I have a wonderful family, a home of my own and some wonderful furry friends.
I guess the biggest mood booster this week is the weather. Gone (for now), are the frigid temperatures and ice covered everything. It is supposed to be in the 60s tomorrow. You can't ask for better than that mid-February.
Goodbye socks and hose and shoes with toes! Come on spring . . . go away RA!
I decided to try again to taper my prednisone again. I knew, from my last attempt, that I should try to lower my dose by half a mg, and lower it every few weeks. I started my new dose and in a matter of a week, the heel of my left foot went completely numb. Over the last few weeks, my ankles had been my RA battlefield. They hurt all the time. They hadn't been swollen every day, but I knew that sometimes swelling isn't obvious. Yesterday they were noticeably swollen, and the numbness had extended to the top of my foot.
I gave up my prednisone taper today and bumped up to a higher than normal dose. I thought I'd feel much better today, but everything hurts. My ankles (and fingers and elbows) are swollen, and my foot is still numb. I'm going to continue the higher dose for a few days and go back to my old "prescribed" dose when I'm doing better.
I guess my rheumatologist is right and I need a new DMARD to get this disease under control. I hate taking all these drugs. I wonder if they are really doing anything at all (except the prednisone). I know that my toes are not all pointing in the right direction. I need a new thumb joint, and a bunionectomy. And, what is going on inside these swollen, painful joints. Will there be more joint replacements to come?
I don't want to deal with BOTH the damage this disease does to your body and the effects of the crazy drugs you have to take to live with it. If I could find a drug that would stop the damage, I'd want it bad. But, as I mentioned, I've had this disease for five years and am still trying (along with a good team of doctors) to find the right treatment for me.
Things aren't all gloomy, and I'm glad. I have a job that I love, even though it can be hard and stressful at times (well, maybe most of the time). I have a wonderful family, a home of my own and some wonderful furry friends.
I guess the biggest mood booster this week is the weather. Gone (for now), are the frigid temperatures and ice covered everything. It is supposed to be in the 60s tomorrow. You can't ask for better than that mid-February.
Goodbye socks and hose and shoes with toes! Come on spring . . . go away RA!
Tuesday, November 23, 2010
One not too good day, please. Oh, and with extra AAACK!
I think I must have woken up today and decided that this was going to be an even worse day than yesterday. If I weren't in the midst of a personal mental/emotional crisis, I would elaborate.
I will spill all (or mostly) later just to make myself feel better. I think I'll just start my next post with Why?
Maybe your imagination can make my reality seem minor, although I doubt it.
I hope your day, your week and your Thanksgiving are much happier than mine was, is or will be.
I will spill all (or mostly) later just to make myself feel better. I think I'll just start my next post with Why?
Maybe your imagination can make my reality seem minor, although I doubt it.
I hope your day, your week and your Thanksgiving are much happier than mine was, is or will be.
Tuesday, November 16, 2010
Oh the week from . . . it rhymes with bell
I can thank RA and Sjorgren's syndrome for some awful tooth decay. Dry mouth is not a minor problem, for sure. Over the weekend a rotten tooth turned nasty on me. I have been putting up with a couple of fairly useless teeth to avoid the cost of having them extracted. I guess that wasn't a good idea. Now I have endure this toothache and wait until Thursday to have it yanked. Of course I can't be off from work that long, so I trudge on.
I didn't really think I had allergies, but I seem to develop a sinus infection around this time of year, and you guessed it, now is the time. At least one round of cephalexin can take care of both the infection and the tooth extraction, but I feel lousy. Or, well, I guess lousier.
My son called me at work this morning and let me know he'd had an accident out of town. We had heavy rain all day today and I don't drive well in rain and I don't see well in rain. I went round and round, asked directions 3 times and finally made what should have been a 30 minute trip in about 3 hours (maybe a little less). He had spun out on an exit ramp and took out a light pole. His car will have to be towed and may not be worth fixing. I guess we'll hope for the best.
One very bright spot is getting back in touch with one of my two neices that I have not seen in several years. She seems to have grown to be a remarkable woman with a beautiful family. It has brought back a lot of good memories for me. I hope it has for her. I did lots of things with them when they were small and I'm glad that I did. My brother died when they were very young and I wanted to keep them a part of our family too. Almost everything I did with my own children, I did with them. I hope they both know that I think about them often and I am so happy that they are doing well.
Life is busy for us all, but with the advent of Facebook, it is easy to keep in touch and share everyday things. The everyday things are really more important than the events in life. There are many more of them and they truly shape who we are.
Life is certainly a challenge daily. We go up, and then down. We soar and then we crash. We live and then, we die. I'm doing my best to focus on the soaring part, but darn it is hard. If I can't get all the crashes off my schedule soon, I may just be too tired for soaring.
I'm turning on the heated matress pad tonight and cuddling up with a good book. I doubt I'll get very far, but I need just one little pleasure to end the day.
I didn't really think I had allergies, but I seem to develop a sinus infection around this time of year, and you guessed it, now is the time. At least one round of cephalexin can take care of both the infection and the tooth extraction, but I feel lousy. Or, well, I guess lousier.
My son called me at work this morning and let me know he'd had an accident out of town. We had heavy rain all day today and I don't drive well in rain and I don't see well in rain. I went round and round, asked directions 3 times and finally made what should have been a 30 minute trip in about 3 hours (maybe a little less). He had spun out on an exit ramp and took out a light pole. His car will have to be towed and may not be worth fixing. I guess we'll hope for the best.
One very bright spot is getting back in touch with one of my two neices that I have not seen in several years. She seems to have grown to be a remarkable woman with a beautiful family. It has brought back a lot of good memories for me. I hope it has for her. I did lots of things with them when they were small and I'm glad that I did. My brother died when they were very young and I wanted to keep them a part of our family too. Almost everything I did with my own children, I did with them. I hope they both know that I think about them often and I am so happy that they are doing well.
Life is busy for us all, but with the advent of Facebook, it is easy to keep in touch and share everyday things. The everyday things are really more important than the events in life. There are many more of them and they truly shape who we are.
Life is certainly a challenge daily. We go up, and then down. We soar and then we crash. We live and then, we die. I'm doing my best to focus on the soaring part, but darn it is hard. If I can't get all the crashes off my schedule soon, I may just be too tired for soaring.
I'm turning on the heated matress pad tonight and cuddling up with a good book. I doubt I'll get very far, but I need just one little pleasure to end the day.
Wednesday, October 6, 2010
It's My Beeswax
I saw my rheumatologist yesterday. My appointment was scheduled for 10:30 a.m. After seeing the doc (11:30) and having my labs done I made it home at 3:30, a whole hour before my quitting time at work.
Today I had several people comment on the fact that I was out for the entire day. I'm sure they don't realize that my rheumatologist appointments are not the same as the usual doctor appointment. For one, my rheumatologist is 45 minutes away. Not because I chose to see someone out-of-town. There are no rheumatologists in my small town. For another, a rheumatologist appointment always includes lab tests which entails another wait at the lab. My appointment often also include xrays, joint injections and DEXA scans.
If my appointment had been in the afternoon, I could have taken a half day from work, but then I'd have to also take time the next day, to go to the lab. I'd have another 1 1/2 hours of driving and that would mean another half day from work. So, no difference in sick leave used. I usually try to scheudule my appointments at a convenient time, but I'll get a letter in the mail a month or so later, letting me know that my appointment has been rescheduled. So, I am at the mercy of the appointment lady. I take what I can get, because I desperately need to see my rheumatologist.
I am definitely not a malingerer or misusing sick leave. I have worked with broken ribs, with splints on my thumbs & wrists, drug side effects, and with daily pain that would have those whiners at home crying out for Jesus.
I am pissed that I feel I have to defend my use of sick time, or to explain it at all. It is my business.
As it turns out, I'm still working on yesterday's appointment. The doctor goofed on a couple of my prescriptions and so now I'm caught between the pharmacy and the busy doctor's office to get it all straightened out. Of course that is time consuming, head-warping and not too much fun too.
On a good note, the changes in my prescriptions and some other recommendations he made should have me feeling better by the weekend.
I guess I'll be posting again soon about the wonders/evils of prednisone.
Today I had several people comment on the fact that I was out for the entire day. I'm sure they don't realize that my rheumatologist appointments are not the same as the usual doctor appointment. For one, my rheumatologist is 45 minutes away. Not because I chose to see someone out-of-town. There are no rheumatologists in my small town. For another, a rheumatologist appointment always includes lab tests which entails another wait at the lab. My appointment often also include xrays, joint injections and DEXA scans.
If my appointment had been in the afternoon, I could have taken a half day from work, but then I'd have to also take time the next day, to go to the lab. I'd have another 1 1/2 hours of driving and that would mean another half day from work. So, no difference in sick leave used. I usually try to scheudule my appointments at a convenient time, but I'll get a letter in the mail a month or so later, letting me know that my appointment has been rescheduled. So, I am at the mercy of the appointment lady. I take what I can get, because I desperately need to see my rheumatologist.
I am definitely not a malingerer or misusing sick leave. I have worked with broken ribs, with splints on my thumbs & wrists, drug side effects, and with daily pain that would have those whiners at home crying out for Jesus.
I am pissed that I feel I have to defend my use of sick time, or to explain it at all. It is my business.
As it turns out, I'm still working on yesterday's appointment. The doctor goofed on a couple of my prescriptions and so now I'm caught between the pharmacy and the busy doctor's office to get it all straightened out. Of course that is time consuming, head-warping and not too much fun too.
On a good note, the changes in my prescriptions and some other recommendations he made should have me feeling better by the weekend.
I guess I'll be posting again soon about the wonders/evils of prednisone.
Thursday, July 29, 2010
The problem with prednisone
I have been on prednisone, at various dosages, since 2006. I've increased the dosage in a burst and taper with every flare I've ever had. Prednisone is the drug that works when nothing else will and it works very fast.
The effectiveness of prednisone is a wonderful thing, but it comes at a terrible price. It causes, among other things, osteoporosis, thinning skin and a risk of overwhelming infection. I've been diagnosed with severe osteoporosis. I've developed cellulitis after a minor cut and I have skin so thin on my forearms that the blood vessels break with barely a brush. So, I've been making a big effort to taper my dosage back to 5mg.
I've gotten down to 6mg and seem to be stuck there. I've felt every decrease, to be sure. Even when I went from 7.5mg to 7mg, I was stiffer and hurtier. It was worse, of course, when I dropped to 6 and when I dropped to 5, I went into a moderate flare of stiffness, pain, swollen, red joints, fatigue and the depression that comes with it.
Since I was definitely flaring, I decided to change my dose to an alternating 6mg and 5mg. I have gradually gotten worse, or maybe my narcotics aren't working as well as they were. I've done this for two weeks and have just decided to go back to 6mg for at least a month to see if I will adjust. I suppose if things get worse, I'll be calling my rheumatologist and will likely be put on a much higher dose than what I tapered from. Square -10.
I knew I was in for discomfort, but I did not think I'd have this much trouble. I'm hoping for better results when I try again. If I can't get down to 5mg, I'm afraid I'll have to add another DMARD or change to a biologic. I don't want to do either one.
If you've had RA for very long, I know you've been through this and can sympathize. If you've just been diagnosed, please keep my post in mind when you place that prednisone on your tongue. It is a quick fix for what ails us, but we just have to pay for it later. I'm not sure it is worth it.
The effectiveness of prednisone is a wonderful thing, but it comes at a terrible price. It causes, among other things, osteoporosis, thinning skin and a risk of overwhelming infection. I've been diagnosed with severe osteoporosis. I've developed cellulitis after a minor cut and I have skin so thin on my forearms that the blood vessels break with barely a brush. So, I've been making a big effort to taper my dosage back to 5mg.
I've gotten down to 6mg and seem to be stuck there. I've felt every decrease, to be sure. Even when I went from 7.5mg to 7mg, I was stiffer and hurtier. It was worse, of course, when I dropped to 6 and when I dropped to 5, I went into a moderate flare of stiffness, pain, swollen, red joints, fatigue and the depression that comes with it.
Since I was definitely flaring, I decided to change my dose to an alternating 6mg and 5mg. I have gradually gotten worse, or maybe my narcotics aren't working as well as they were. I've done this for two weeks and have just decided to go back to 6mg for at least a month to see if I will adjust. I suppose if things get worse, I'll be calling my rheumatologist and will likely be put on a much higher dose than what I tapered from. Square -10.
I knew I was in for discomfort, but I did not think I'd have this much trouble. I'm hoping for better results when I try again. If I can't get down to 5mg, I'm afraid I'll have to add another DMARD or change to a biologic. I don't want to do either one.
If you've had RA for very long, I know you've been through this and can sympathize. If you've just been diagnosed, please keep my post in mind when you place that prednisone on your tongue. It is a quick fix for what ails us, but we just have to pay for it later. I'm not sure it is worth it.
Thursday, July 15, 2010
Blog Retitle
After quite a few very positive posts, I'm back to whining. My ittle bitty blog may have to be retitled the BooHoo Blog.
I've been tapering prednisone and have only dropped 1.5mg over the last 3 weeks or so, but that is enough to send me back to the deep dark pit that is Rheumatoid Arthritis. Everything, everywhere hurts, my eyes are so dry I can't see well, I'm taking pain killers around the clock and I'm back to feeling blue and hopeless. If I had tears I'd cry 'round the clock too.
The hard drive in my Mac at work went bad, real bad and I lost all my files. I dread re-creating everything. It is a long story. Basically, I bought my own DVD's for four years and backed up my files, but then my optical drive went bad, I couldn't get an external drive or convince anyone that I needed backup of any sort. I gave up. I should have kept spending my own money, just for peace of mind, but money is one of many things that I just don't have enough of. And, to top it off, my admnistrators decided to replace my wonderful Mac with a regular old computer. I'm going to put on my so-fake smile and just keep plugging anyway. I don't have any choice. There just aren't any jobs around.
My daughter is having some medical issues and I'm worried to death.
I lost two fillings since my last cleaning in April. I always seem to lose fillings after a cleaning. What is up with that?
The love of my life is busy taking care of his aging parents and we barely have time to talk and he's so exhausted that he doesn't want to.
There isn't one positive thing going on in my life.
So, there you have it. A synopsis of the last few weeks. I hope that everything will do another 180 and I can be something other than depressed.
I've removed myself from all of my social contact. I just don't want to infect anyone with my negative thinking. So, I've probably pissed quite a few people off.
Right now, everything is just not good.
I've been tapering prednisone and have only dropped 1.5mg over the last 3 weeks or so, but that is enough to send me back to the deep dark pit that is Rheumatoid Arthritis. Everything, everywhere hurts, my eyes are so dry I can't see well, I'm taking pain killers around the clock and I'm back to feeling blue and hopeless. If I had tears I'd cry 'round the clock too.
The hard drive in my Mac at work went bad, real bad and I lost all my files. I dread re-creating everything. It is a long story. Basically, I bought my own DVD's for four years and backed up my files, but then my optical drive went bad, I couldn't get an external drive or convince anyone that I needed backup of any sort. I gave up. I should have kept spending my own money, just for peace of mind, but money is one of many things that I just don't have enough of. And, to top it off, my admnistrators decided to replace my wonderful Mac with a regular old computer. I'm going to put on my so-fake smile and just keep plugging anyway. I don't have any choice. There just aren't any jobs around.
My daughter is having some medical issues and I'm worried to death.
I lost two fillings since my last cleaning in April. I always seem to lose fillings after a cleaning. What is up with that?
The love of my life is busy taking care of his aging parents and we barely have time to talk and he's so exhausted that he doesn't want to.
There isn't one positive thing going on in my life.
So, there you have it. A synopsis of the last few weeks. I hope that everything will do another 180 and I can be something other than depressed.
I've removed myself from all of my social contact. I just don't want to infect anyone with my negative thinking. So, I've probably pissed quite a few people off.
Right now, everything is just not good.
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