OK. So, you see, this post was to be about my New Year's Resolutions. However, I think calling them that tends to make people fail almost right away. So.......We will call this my To-Do List for 2012. I LOVE To-Do lists. Honestly, I live by them. I love checking things off as I get them done, I feel I've accomplished something, so let's hope I accomplish alot this year:)
Write Dax more regularly, at least once a week. I love my brother something fierce, but life seems to happen around me and I can't get away from it. I need to be more mindful of sitting down and writing to him. He needs my love and support and gosh darnnet he will get it! I really enjoy writing to him to, we've had better conversations over the past year than we've had in the past 10 years. This is a VERY good thing, especially since we have now lost both our Mother and our Father.
Update Blog. Really, I've already said this, but it bears repeating. I have family members and friends who read this to catch up on the family and to see pictures and whatnot. I'm not going to put a number on how often, but will try for once a week or so. We'll see what happens.
Work out 3-4 times a week. I'm doing this now, but I have to step it up a little, push myself a little more each week. I know my pain level and I know my pain limit. For those of you who don't know about Rheumatoid Arthritis, I can't subscribe to the "No Pain No Gain" theory. For me, that would be just plain dumb. I can work until the pain is there, but not go further. However, I can work until I'm exhausted beyond reason, just have to watch the pain level. I know that. Good thing to know:)
Write in Journal 3-4 times a week. This isn't too hard, but I do need to make it happen. I feel better when I do this. Even if one day is just a phrase or verse or something of that nature.
Better Track of Finances. This is always one we try for, and we do well, but not well enough.
Scrapbook at least once a week. I used to scrapbook all the time. I have fallen woefully behind. So, I'm gonna get moving and get up to date. I really need to do this a few times a week, so I will say once a week, but try for much more:)
Learn more about Asperger's, Autism and ADHD. I've read huge amounts on all of these, but the more information, the better. Michael is doing so well and I want to make sure all of us continue in that manner.
Eat better. That's all there really is to say about that.
Drink more water. I drink about 120 ounces a day, but I want to drink even more. Water will help get rid of water retention, even that water retention brought on by prednisone. Grrrrrr prednisone!
Visit out of town family more. Last year we weren't able to take hardly any optional family gatherings. We took some for Dad's funeral and wrapping stuff up with that, but that was it. All of that was because of various health issues with me. This year will be much better and we will visit much more!
On another note: we had a great family visit with Geoff's family over Christmas break. We left for St. Louis on Dec. 23rd and came home on Jan. 1st. Got to see all of Geoff's siblings and most of his aunt's and cousins. It was a never-ending blur of busyness and chaos, but it was pretty much great. Michael got to spend time with his first first cousin on Geoff's side and reacted in just the way a boy should react to a girl five years his junior. He showed her some things and maintained his distance. It was fun to watch!
Now we're home and sorting through many many piles. I'll write more and post pics when we get through those:)
Tuesday, January 03, 2012
Tuesday, December 13, 2011
GAH!
I keep saying I will update more regularly. I will. I promise. Maybe.
I'm thinking alot about everything that's come and gone this past year, and am trying not to dwell, but it's kinda hard this time of year. Alot of reflection, unfortunately most of it not good. So I'm gonna write it all here and try to "throw it out the door" (Michael's old speech pathologist used to use that saying when trying to rid Michael of his poor speech patterns:)I have also had tons of great things occur this year too, so I will try to list some those as well.
At the beginning of the year (January 6ish)Michael was officially (after rounds of evaluations and doctor appointments) diagnosed with ADHD with a little oppositional defiant disorder thrown in for good measure. While this diagnosis wasn't a huge surprise, it was a huge shock to actually read and hear it. While we had already read quite a few books about ADHD, we began reading alot more. We're all working with it now and doing remarkably well.
Soon thereafter, my brother got in some bad trouble with the law, and was sentenced to 10 years in prison.
February 24th marked the 4 year anniversary of my mother's death.
On March 18th, my father passed away due to a drug overdose.
In May, we discovered that Michael also has a mild form of Asperger's Syndrome. Another thing we had researched and continue to research.
Through everything, I was dealing with extra doctor appointments myself. My left arm has been tingling and numb and my right knee was in so much pain, I had to resort to the use of a cane. After many appointments and much physical therapy, no news on the arm. The knee, however, was deemed operable. In mid-September I had an arthroscopic Synovectomy and a Chondroplasty done. The recuperation has been long, due to the fact that I have very little in the way of healing capabilities, but it's coming along nicely. My Mother -in-Law was able to come up from Arkansas to help out right after the surgery. She was such a HUGE help and I am very thankful for her and my father in law. They made a visit to us three times this year (including the surgery).
In July, I fractured my left foot again. It hadn't fractured since the surgery in 2005, but since I was favoring my right side, my left had to take up the slack. I spent about three months (including the time I had my knee surgery) in a surgical shoe and/or removable cast (the boot).
During the entire year, we had to hold of on family trips due to my knee. So we're very greatful that we're finally able to become fairly active again:)
So, now it's December and all is quiet in the house. Getting ready for Christmas and doing all sorts of normal stuff with that. We're a little harried around here, but all is good.
We get to go to St. Louis for Christmas and get to see, hopefully, the entire family. Michael is counting down the days until we get to leave!
I'm busy making Christmas gifts and cookies and having a pretty good time doing that too!
This coming year is already looking great!!!
I'm thinking alot about everything that's come and gone this past year, and am trying not to dwell, but it's kinda hard this time of year. Alot of reflection, unfortunately most of it not good. So I'm gonna write it all here and try to "throw it out the door" (Michael's old speech pathologist used to use that saying when trying to rid Michael of his poor speech patterns:)I have also had tons of great things occur this year too, so I will try to list some those as well.
At the beginning of the year (January 6ish)Michael was officially (after rounds of evaluations and doctor appointments) diagnosed with ADHD with a little oppositional defiant disorder thrown in for good measure. While this diagnosis wasn't a huge surprise, it was a huge shock to actually read and hear it. While we had already read quite a few books about ADHD, we began reading alot more. We're all working with it now and doing remarkably well.
Soon thereafter, my brother got in some bad trouble with the law, and was sentenced to 10 years in prison.
February 24th marked the 4 year anniversary of my mother's death.
On March 18th, my father passed away due to a drug overdose.
In May, we discovered that Michael also has a mild form of Asperger's Syndrome. Another thing we had researched and continue to research.
Through everything, I was dealing with extra doctor appointments myself. My left arm has been tingling and numb and my right knee was in so much pain, I had to resort to the use of a cane. After many appointments and much physical therapy, no news on the arm. The knee, however, was deemed operable. In mid-September I had an arthroscopic Synovectomy and a Chondroplasty done. The recuperation has been long, due to the fact that I have very little in the way of healing capabilities, but it's coming along nicely. My Mother -in-Law was able to come up from Arkansas to help out right after the surgery. She was such a HUGE help and I am very thankful for her and my father in law. They made a visit to us three times this year (including the surgery).
In July, I fractured my left foot again. It hadn't fractured since the surgery in 2005, but since I was favoring my right side, my left had to take up the slack. I spent about three months (including the time I had my knee surgery) in a surgical shoe and/or removable cast (the boot).
During the entire year, we had to hold of on family trips due to my knee. So we're very greatful that we're finally able to become fairly active again:)
So, now it's December and all is quiet in the house. Getting ready for Christmas and doing all sorts of normal stuff with that. We're a little harried around here, but all is good.
We get to go to St. Louis for Christmas and get to see, hopefully, the entire family. Michael is counting down the days until we get to leave!
I'm busy making Christmas gifts and cookies and having a pretty good time doing that too!
This coming year is already looking great!!!
Thursday, September 08, 2011
Tomorrow, Tomorrow, I Love Ya Tomorrow, You're Alway's a Day Away!!
I have always been a fan of the movie "Annie". I haven't had the opportunity to see the play, but if I get the chance, I'll be all over that. Even as a child, Annie's optimism amazed me. I was six when the movie came out, and I had never known that kind of optimism. My world always seemed kinda gloomy and I was always waiting for the next shoe to drop, so to speak. At six, I was in the middle of a long series of testing that would go on for another two years before I ever got a diagnosis of Juvenile Rheumatoid Arthritis. Watching Annie, who didn't have a home (orphanage does not count), who didn't have a family, who didn't have anything, made me feel a little like a schmuck, even at six. I had a roof over my head, a mother who adored me and would do ANYTHING for me, a brother who could be tolerated, and an extended family that helped us as much as they could. So what if I had a father who was never around, and when he was, he was a mean drunk, so what if I was in pain and nobody knew the reason why, so what if my brother was a typical brother and picked on me all the time. Compared to Annie, I had it good.
Times changed, I've gone through times of major pessimism where everyone around me wanted to shoot me. I've gone through times of great optimism, where again, everyone wanted to shoot me. On the whole, I think I'm an optimist. Although, I'm very sarcastic by nature (did you ever meet my Mom? I come by it honestly:), so i think some people still think I'm a pessimist. And when people ask me how I am, I tend to give it to them straight. And since, I'm not all that healthy right now, it doesn't sound so great. But I'm not good a sugarcoating, and i won't try to be good at it, I don't have time.
I will tell you this. I KNOW I am blessed. Doctor's told be when I was eight that I probably would not be walking when I was 12. I'm 35 and still walking. With alot of pain, but still walking. I was told that I may not be able to have kids because of all the experimental stuff I've been on (most of which is no longer experimental, but in use), I have a beautiful biological son who melts my heart almost every time I look at him. When I was in my early teens, I thought I would never get married, who would want to put up with all this? My husband, Geoff, is the most amazing man ever. really. We've been married just over nine years and have been together for about 12 years. I have better in-laws than most people could ever dream of. We own a condo (although it is in Chicago and we're in Syracuse). See, extremely blessed.
I'm getting into this because, as noted in previous posts, I'm having surgery tomorrow. I'm excited about this surgery, but not necessarily about the outcome. Heck, the doc isn't even all that optimistic, and he's and incredibly optimistic guy. I'm excited because I know, even if it doesn't take away the pain, it puts me that much closer to a total knee replacement. I've known this was going to happen since I was eight. So I've been able to hold it off for a long time. And I'm VERY optimistic about what a replacement could do for me:)
So tomorrow, please send and prayers and happy thoughts my way. All are needed and greatly appreciated.
Less than 24 hours to go!!!!!
Times changed, I've gone through times of major pessimism where everyone around me wanted to shoot me. I've gone through times of great optimism, where again, everyone wanted to shoot me. On the whole, I think I'm an optimist. Although, I'm very sarcastic by nature (did you ever meet my Mom? I come by it honestly:), so i think some people still think I'm a pessimist. And when people ask me how I am, I tend to give it to them straight. And since, I'm not all that healthy right now, it doesn't sound so great. But I'm not good a sugarcoating, and i won't try to be good at it, I don't have time.
I will tell you this. I KNOW I am blessed. Doctor's told be when I was eight that I probably would not be walking when I was 12. I'm 35 and still walking. With alot of pain, but still walking. I was told that I may not be able to have kids because of all the experimental stuff I've been on (most of which is no longer experimental, but in use), I have a beautiful biological son who melts my heart almost every time I look at him. When I was in my early teens, I thought I would never get married, who would want to put up with all this? My husband, Geoff, is the most amazing man ever. really. We've been married just over nine years and have been together for about 12 years. I have better in-laws than most people could ever dream of. We own a condo (although it is in Chicago and we're in Syracuse). See, extremely blessed.
I'm getting into this because, as noted in previous posts, I'm having surgery tomorrow. I'm excited about this surgery, but not necessarily about the outcome. Heck, the doc isn't even all that optimistic, and he's and incredibly optimistic guy. I'm excited because I know, even if it doesn't take away the pain, it puts me that much closer to a total knee replacement. I've known this was going to happen since I was eight. So I've been able to hold it off for a long time. And I'm VERY optimistic about what a replacement could do for me:)
So tomorrow, please send and prayers and happy thoughts my way. All are needed and greatly appreciated.
Less than 24 hours to go!!!!!
Monday, September 05, 2011
The Great American Knee Surgery of 2011 and Other Amazing Things
I'm just writing to keep everyone updated on our life here in the great Northeastern United States. Of course that's why I'm writing. Why else would I be writing. Oh well...
Currently I'm getting ready for the Great Arthroscopic Knee Surgery of 2011 (that's really what i'm gonna start calling it:) I'm making lists right now. Shopping lists, to do lists, Michael lists, Geoff lists and, of course, Daina lists. I do love my lists. I feel awesome when I get to check something off mys lists, and they are quite long right now...
On that note. Does anyone have any great things one should have by their side during recovery from such an operation? Any tips or tricks for manneuvering through the day with and even more bum knee? Any and all suggestions would be greatly appreciated!
I'm hoping to get a video of my surgery, not sure if that would happen, but it would be neat. if I do get one, it will be posted here, just a warning:)
Michael starts school tomorrow, and while I'm a bit nervous for him, I'm extremely excited, for him and me!!He's got a great team working with him this year and I'm looking forward to working with them all! My friend Brandi will be picking him up from the apart and taking him to the bus if I can't (she's pretty awesome). Of course, Mom will do it while she's here. I've got a wonderful prayer team (thank you!!!!)and a wonderful support group of friends and family (thank you too!!!!).
I should have an infusion this week, but because of the GAKS (yay the acronym is GAKS!! How awesome is that??) I will not have it until the 22nd. The last week is always hard, think it will be harder now. My fingers are swollen and I'm gonna have to do some fancy manneuvering to get my rings off my finger, but this will work!!!I have four doc appts this week (not including the GAKS) and an appointment with two of Michael's teachers. Busy busy busy!! See why my lists are important?
Last week we had Maw Maw and Paw Paw in for 6 days!!!!So much fun and so busy. The day they left I started with a fever and slept for two days. But on the upswing now.
We went to the fair, and to Dinosaur BBQ, and to Southwick Beach, and they took Michael miniature golfing while I had a doc appt, and Mom and I did a puzzle (actually, finished one we started when they were up here in April. i have one of those things that role puzzles up, so i had saved it for the next time we were together:). Mom and I went to the brand spanking new Hobby Lobby just up the street from us in Fayetteville. Annnnnnddddd we removed Michael's training wheels!!He's been able to ride without them for quite some time, but he refused, but he finally agreed:) All in all had a great time. We LOVE having them visit, especially since we know how hard it is for Dad to get away, such a blessing!
Some cuddle time with Michael and Paw Paw
Removing the training wheels, he's soooo big!!
First war wound. he handled it well and got right back on the bike after being given the band aid (it was pretty gross:(
Mom is coming back up on Sunday the 11th to take care of the boy and I after my surgery, so geoff doesn't have to take alot of time off work. Hopefully we'll have an extended Holiday this year with family, since we've missed out on so much because of my knee and not knowing what was going on with it. LOVE my husbands family!!!!I really cannot stress that enough!!
Currently I'm getting ready for the Great Arthroscopic Knee Surgery of 2011 (that's really what i'm gonna start calling it:) I'm making lists right now. Shopping lists, to do lists, Michael lists, Geoff lists and, of course, Daina lists. I do love my lists. I feel awesome when I get to check something off mys lists, and they are quite long right now...
On that note. Does anyone have any great things one should have by their side during recovery from such an operation? Any tips or tricks for manneuvering through the day with and even more bum knee? Any and all suggestions would be greatly appreciated!
I'm hoping to get a video of my surgery, not sure if that would happen, but it would be neat. if I do get one, it will be posted here, just a warning:)
Michael starts school tomorrow, and while I'm a bit nervous for him, I'm extremely excited, for him and me!!He's got a great team working with him this year and I'm looking forward to working with them all! My friend Brandi will be picking him up from the apart and taking him to the bus if I can't (she's pretty awesome). Of course, Mom will do it while she's here. I've got a wonderful prayer team (thank you!!!!)and a wonderful support group of friends and family (thank you too!!!!).
I should have an infusion this week, but because of the GAKS (yay the acronym is GAKS!! How awesome is that??) I will not have it until the 22nd. The last week is always hard, think it will be harder now. My fingers are swollen and I'm gonna have to do some fancy manneuvering to get my rings off my finger, but this will work!!!I have four doc appts this week (not including the GAKS) and an appointment with two of Michael's teachers. Busy busy busy!! See why my lists are important?
Last week we had Maw Maw and Paw Paw in for 6 days!!!!So much fun and so busy. The day they left I started with a fever and slept for two days. But on the upswing now.
We went to the fair, and to Dinosaur BBQ, and to Southwick Beach, and they took Michael miniature golfing while I had a doc appt, and Mom and I did a puzzle (actually, finished one we started when they were up here in April. i have one of those things that role puzzles up, so i had saved it for the next time we were together:). Mom and I went to the brand spanking new Hobby Lobby just up the street from us in Fayetteville. Annnnnnddddd we removed Michael's training wheels!!He's been able to ride without them for quite some time, but he refused, but he finally agreed:) All in all had a great time. We LOVE having them visit, especially since we know how hard it is for Dad to get away, such a blessing!
Some cuddle time with Michael and Paw Paw
Removing the training wheels, he's soooo big!!
First war wound. he handled it well and got right back on the bike after being given the band aid (it was pretty gross:(
Mom is coming back up on Sunday the 11th to take care of the boy and I after my surgery, so geoff doesn't have to take alot of time off work. Hopefully we'll have an extended Holiday this year with family, since we've missed out on so much because of my knee and not knowing what was going on with it. LOVE my husbands family!!!!I really cannot stress that enough!!
Thursday, August 25, 2011
Arthroscopic Synovetomy with Video:)
This is what they will be doing to me on September 9th 2011, as long as my ekg looks good. My ekg is on Aug 31st. I'm super excited but getting a little nervous. So please pray or send happy thoughts or just some extra loving my way. All is greatly appreciated and always welcome:)
The surgeon will also be looking at a possible meniscus tear and a baker's cyst.
I'm wondering if I will get a video of my surgery?!?!?
The surgeon will also be looking at a possible meniscus tear and a baker's cyst.
I'm wondering if I will get a video of my surgery?!?!?
Thursday, August 18, 2011
Finally an Update
Now, I'm really updating. First off, I'm bored. And tired. And tired of being bored. Just sayin.
The man-child, aka Michael, aka the monster, is doing quite well. Though he is bored too. He's super excited to start school again and that he gets to eat lunch at school now. I'm obviously nervous about him eating lunch at school because of his eating habits, or the fact that he doesn't enjoy eating, whatever you choose.
For those of you who don't know.....He got a formal diagnoses of ADHD in January and then a formal diagnoses of Asperger's in April. We've spent the last eight months getting used to a little different way of doing things. Since we've known about the Sensory Modulation Disorder for years now, we really haven't changed all that much. We're all adapting. It really helps that he is such a loving, giving child. He is sooooooo smart. he really cracks people up with how he phrases things. He said yesterday to his babysitter " this doesn't work well on rough surfaces". She got a real kick out of that. It's just not how a six year old would phrase things.
He's doing great with his reading, although he does get frustrated. He wants to do everything right the first time. When that doesn't happen, he gets mad at himself. but we're working on that:)
We've had a pretty good summer, all things considered. No camping this year though, which kinda sucks. Next year. Next year we will camp. Even if I have to spend ALL my time at the camp site and not see anything else. But we've gone to the beach alot and we've visited with friends, so it's been good. We've had to hold off on trips to St. Louis and Little Rock because of threat of surgery for me. But more about that in a moment. Here are some pics of visits and such:)
Maw Maw and Paw Paw will be coming up next week to go to the fair with us and visit the monster. They'll be here for a week and we always have a great time with them:)
Geoff is still loving his job, though summer is a very busy time for him. Lots of late nights, but we know that's temporary. He still likes being up here in the great North. We haven't sold our condo yet, but we do have an amazing renter in it, so lots of it is paid for, we're very thankful for that.
We've found a church that we like that has a great program for kids and offers buddies for kids with special needs. So we're really liking that:)
I am having an arthroscopic synovectomy on Sept. 9th at 8:45am. The doc will go in and shave the lining of my joint out. he will also be looking at a slight tear in the meniscus and a bakers cyst while he's in there, so those might get fixed too. I would much rather get a total replacement. it's been a year and a half since this right knee has worked to my normal ability. Not yours, mine. Mom will be coming up for a while after the surgery to help around the house and drive us to appointments and to play with Michael while I'm laid up. I LOVE my in-laws!!!!!!!
So, there's the scoop....Maybe I will actually write more. If I had a lap top it would be easier...
The man-child, aka Michael, aka the monster, is doing quite well. Though he is bored too. He's super excited to start school again and that he gets to eat lunch at school now. I'm obviously nervous about him eating lunch at school because of his eating habits, or the fact that he doesn't enjoy eating, whatever you choose.
For those of you who don't know.....He got a formal diagnoses of ADHD in January and then a formal diagnoses of Asperger's in April. We've spent the last eight months getting used to a little different way of doing things. Since we've known about the Sensory Modulation Disorder for years now, we really haven't changed all that much. We're all adapting. It really helps that he is such a loving, giving child. He is sooooooo smart. he really cracks people up with how he phrases things. He said yesterday to his babysitter " this doesn't work well on rough surfaces". She got a real kick out of that. It's just not how a six year old would phrase things.
He's doing great with his reading, although he does get frustrated. He wants to do everything right the first time. When that doesn't happen, he gets mad at himself. but we're working on that:)
We've had a pretty good summer, all things considered. No camping this year though, which kinda sucks. Next year. Next year we will camp. Even if I have to spend ALL my time at the camp site and not see anything else. But we've gone to the beach alot and we've visited with friends, so it's been good. We've had to hold off on trips to St. Louis and Little Rock because of threat of surgery for me. But more about that in a moment. Here are some pics of visits and such:)
Maw Maw and Paw Paw will be coming up next week to go to the fair with us and visit the monster. They'll be here for a week and we always have a great time with them:)
Geoff is still loving his job, though summer is a very busy time for him. Lots of late nights, but we know that's temporary. He still likes being up here in the great North. We haven't sold our condo yet, but we do have an amazing renter in it, so lots of it is paid for, we're very thankful for that.
We've found a church that we like that has a great program for kids and offers buddies for kids with special needs. So we're really liking that:)
I am having an arthroscopic synovectomy on Sept. 9th at 8:45am. The doc will go in and shave the lining of my joint out. he will also be looking at a slight tear in the meniscus and a bakers cyst while he's in there, so those might get fixed too. I would much rather get a total replacement. it's been a year and a half since this right knee has worked to my normal ability. Not yours, mine. Mom will be coming up for a while after the surgery to help around the house and drive us to appointments and to play with Michael while I'm laid up. I LOVE my in-laws!!!!!!!
So, there's the scoop....Maybe I will actually write more. If I had a lap top it would be easier...
Tuesday, August 09, 2011
For RAWarrior and Everyone Else Who Requested That I Update Again
Ok. So I may have lied a little when I said I would start posting again. I've had a crappy year and a half and have had very little good to write about, so I chose not to write. In retrospect we also had quite a few blessings as well, but you know how it is when you're going through the crappy stuff. This here blog post is gonna be about Rheumatoid Arthritis (RA) and pain relief. A blogger that I greatly respect posted this blog http://http://rawarrior.com/rheumatoid-arthritis-pain-relief-what-do-you-know/ to ask about doctors and pain relief for people with RA. Since above stated crappy year was due, largely in part, to pain problems associated with my RA, I thought I should jump back on the horse, or bicycle, or whatever. I will be posting more about my wonderful boys later. Promise. Again.
RAWarrior asked a few questions about RA and pain relief in her blog. So I'm just gonna copy those questions the answer them. Sounds simple, let's see if I can do this.
1. Do people have sufficient pain relief? Are medications sufficiently prescribed? Do they work?
Those of you who know what I've been going through already know the answer to this. NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!. In HUGE CAPS and many exclamation points. I am in pain throughout the day and night and yet have been told I'm not in an RA flare, but a fibromyalgia flare. However, feels like both to me. I am on pain meds would feel like without anything. Have SERIOUSLY considered within the past six months, quitting everything, infusions, prednisone, methotrexate.......everything but the vitamins. But once again, if I feel this crummy on stuff, how am I gonna feel off stuff?
2. Which doctors prescribe medications for Rheumatoid Arthritis pain relief? Pain management specialists? Rheumatologist practices? General practitioners?
My Rheumatologist prescribes pain relief meds, though I'm trying to find a RELIABLE pain management specialist. The one I saw for my arm that has been numb for 4 months said the same thing I've been getting from alot of specialists lately. I shouldn't be feeling this way. The drugs and therapy I'm on should be helping, but she gave no indication as to why I am and why they're not.
3. Which methods of Rheumatoid Arthritis pain relief work? Eastern medicine like acupuncture? Spiritual techniques like meditation? Traditional physical methods like heat, ice, or rest?
I have have not tried acupuncture, but am currently doing some research on it. Something has to work, right? Meditation and prayer helps my mindset about the pain, but doesn't help the pain. So, it does do something, I guess. I've been told no Heat, but heat makes it feel better for a while, but then it hurts worse. Ice actually causes me great pain (am I the only one??). Rest helps the fibromyalgia, but since I still have severe morning stiffness and soreness (yes, even after an afternoon nap), I don't think it helps with the RA. Plus, since I have a 6 yr old with special needs, rest is kinda hard to come by during the day when he's home..
OK. That's about all folks:) I have an infusion on Thursday and my arthroscopic synovectomy on my right knee will probably be on the 10th of September (waiting for Michael's first week of school).
RAWarrior asked a few questions about RA and pain relief in her blog. So I'm just gonna copy those questions the answer them. Sounds simple, let's see if I can do this.
1. Do people have sufficient pain relief? Are medications sufficiently prescribed? Do they work?
Those of you who know what I've been going through already know the answer to this. NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!. In HUGE CAPS and many exclamation points. I am in pain throughout the day and night and yet have been told I'm not in an RA flare, but a fibromyalgia flare. However, feels like both to me. I am on pain meds would feel like without anything. Have SERIOUSLY considered within the past six months, quitting everything, infusions, prednisone, methotrexate.......everything but the vitamins. But once again, if I feel this crummy on stuff, how am I gonna feel off stuff?
2. Which doctors prescribe medications for Rheumatoid Arthritis pain relief? Pain management specialists? Rheumatologist practices? General practitioners?
My Rheumatologist prescribes pain relief meds, though I'm trying to find a RELIABLE pain management specialist. The one I saw for my arm that has been numb for 4 months said the same thing I've been getting from alot of specialists lately. I shouldn't be feeling this way. The drugs and therapy I'm on should be helping, but she gave no indication as to why I am and why they're not.
3. Which methods of Rheumatoid Arthritis pain relief work? Eastern medicine like acupuncture? Spiritual techniques like meditation? Traditional physical methods like heat, ice, or rest?
I have have not tried acupuncture, but am currently doing some research on it. Something has to work, right? Meditation and prayer helps my mindset about the pain, but doesn't help the pain. So, it does do something, I guess. I've been told no Heat, but heat makes it feel better for a while, but then it hurts worse. Ice actually causes me great pain (am I the only one??). Rest helps the fibromyalgia, but since I still have severe morning stiffness and soreness (yes, even after an afternoon nap), I don't think it helps with the RA. Plus, since I have a 6 yr old with special needs, rest is kinda hard to come by during the day when he's home..
OK. That's about all folks:) I have an infusion on Thursday and my arthroscopic synovectomy on my right knee will probably be on the 10th of September (waiting for Michael's first week of school).
Monday, January 04, 2010
Seriously?
So, it's been six months since I posted. I will do better this year, starting now!
I started a new infusion treatment last month. instead of Remicade, I'm now on Orencia. So far, it's working much better and I'm highly optimistic, so please keep up the prayers and good thoughts, we all know I need them:)
Michael started pre-school last fall and he LOVES it! He's learning so fast and is an extremely social creature. He goes three days a week for three hours a day. He actually cries when he doesn't get to go and doesn't want to leave when I go to pick him up. I really can't wait for him to start kindergarten!
So much more is going on, but those are the big things. Geoff still loves his job and I still hate the snow, but I do like this area of the country alot. We did some camping at the end of the summer last year, and we plan on doing alot more this year, as long as my health holds up, we're good to go.
I plan to update this blog more often with more pictures this year, so keep on looking:)
I started a new infusion treatment last month. instead of Remicade, I'm now on Orencia. So far, it's working much better and I'm highly optimistic, so please keep up the prayers and good thoughts, we all know I need them:)
Michael started pre-school last fall and he LOVES it! He's learning so fast and is an extremely social creature. He goes three days a week for three hours a day. He actually cries when he doesn't get to go and doesn't want to leave when I go to pick him up. I really can't wait for him to start kindergarten!
So much more is going on, but those are the big things. Geoff still loves his job and I still hate the snow, but I do like this area of the country alot. We did some camping at the end of the summer last year, and we plan on doing alot more this year, as long as my health holds up, we're good to go.
I plan to update this blog more often with more pictures this year, so keep on looking:)
Wednesday, July 01, 2009
What's going on now????
Hello All!
All tests have come back great!!!!The mass on my Thymus appears to be part of the Thymus itself turning into fatty tissue (which is what it's supposed to do:). The results weren't actually inconclusive, the nurse gave me the wrong answer. the doc just wanted to see me to go over ALL the test results from the last couple months. I have to get another MRI in about 6 months, just as a followup, but all looks good!!!!!
We're going to Ocean City this weekend, so I'll come back with plenty of pics:)
All tests have come back great!!!!The mass on my Thymus appears to be part of the Thymus itself turning into fatty tissue (which is what it's supposed to do:). The results weren't actually inconclusive, the nurse gave me the wrong answer. the doc just wanted to see me to go over ALL the test results from the last couple months. I have to get another MRI in about 6 months, just as a followup, but all looks good!!!!!
We're going to Ocean City this weekend, so I'll come back with plenty of pics:)
Friday, June 12, 2009
Good News! I DO NOT HAVE LUNG CANCER!!!!
This will be a good news, still don't know news, and extra cute pics entry.
Michael and our good friend Marcia roughhousing in the tee-pee. They don't look like their very happy, Do they?(Insert sarcasm..)This was up at Mexico point, so beautiful and Marcia was an excellent tour guide!!
Seriously. I don't have Lung Cancer, that is VERY good news. The nodules on my lungs are just scar tissue. They still want a followup CT in 8 months, but nothing to worry about. When I had that bout with pleurisy so long ago, it left lots of little scars on my lungs, so that's what the unidentified objects are:)
Problem: when they did the CT on my lungs, they found a "mass" on my Thymus gland. They wanted an MRI on that. I waited on another approval from the insurance company. I had the first MRI on Tuesday (today is Friday). They called me back in for more views later on Tuesday, but because I have a son and am his sole caretaker during the day, I couldn't make it back in until yesterday. Went in yesterday for the extra views. The doc called yesterday at around four to tell me the results are "inconclusive". She wants to see me in her office and I have an appointment first thing Monday morning. After talking to a couple nurse friends of mine, they told me that she'll probably refer me to someone for a biopsy, but we can't be sure until Monday.
For those of you who don't know (I didn't until a couple weeks ago), the Thymus is a gland that helps the immune system until your out of puberty, then it does nothing but shrink until it's nothing but fat (when you're about 60). So the gland itself isn't all that important, or is it????Remember, I said helps the immune system. Does everyone remember that MY immune system has always worked AGAINST my body instead of for it? That's what Rheumatoid Arthritis does, that's its job.Anyway, people who get masses on their Thymus gland generally have, or end up with, an autoimmune disease. Yay Me!!!!! So, could be something bad, could just be nothing. If it's something bad, they'll just take out the entire thymus, they don't mess around with just removing the mass, the thymus is too small and it doesn't do anything. So, still alot of speculation right now. But I feel fine, except for the fact that I haven had a remicade infusion in about four weeks, so I feel like I have arthritis, but my "spa day" is next Thursday, and then I will feel much better:)
OK, and because these were too cute to pass up, here's a few pis of my Boy (or boy's or friend and boy....)
Michael and Geoff with a sign that says "(I'm cute, but I may have rabies" PERFECT!!
Michael and our good friend Marcia roughhousing in the tee-pee. They don't look like their very happy, Do they?(Insert sarcasm..)This was up at Mexico point, so beautiful and Marcia was an excellent tour guide!!
And last but not least. Michael has been given ALOT of Time-Outs lately. Here's one when we were on a fishing trip. He decided to run into the woods.....
OK. That's it for now. Will definitely update after my appointment on Monday. Plus, I'm sure we'll make it to a fun park or something this weekend...
Subscribe to:
Posts (Atom)
