Just a quick follow-up to the last post. The Rheumy's nurse did call back. Armed with nothing but the message left on their machine from me, the doctor determined that my back pain was indeed due to RA. "Don't you want me to come in and perhaps take an x-ray or something," I asked. No, that's not necessary, I was told. Based on my chart the doctor feels it definitely is RA and since my liver is screwed due to the Methrotrexate which has been decreased to 5 pills per week, my only option now is to go on a biologic, Enbrel.
I expressed my concerns to the nurse concerning the potential of deadly side effects and my horror at the thought of having to shoot myself up with a needle. She poo-poohed them and said as long as I shoot myself in a different location each week there wouldn't be a problem, and as far as the side effects being dangerous, the company has to list all of them even if just one person gets it. They are very "rare" and she's personally never heard of one of their patients have any serious ones. As far as the $20,000+ cost per year, the office had coupons which would help with the price. Yes, I would have to continue taking the MTX too. She closed the conversation by adding it I was her relative she would insist I begin treatment and I would wonder why I hadn't started earlier. I told her I would get back to them the next day.
So off I went to the internet and googled Enbrel, again. I wanted to read what others were saying. Experiences went from it working wonderfully to a husband's lament that his wife was now dead because of it. I guess, just like any drug, everyone has different experiences. Maybe if I didn't have to continue to take MTX I would be more willing to take the plunge...or maybe if it was a cure and not just another treatment I would be more willing to take the plunge...or maybe if I couldn't possibly get MS, lose my vision, or get cancer from it I would be more willing to take the plunge. But right now I'm just not willing to take the plunge. I never called the rheumy's office back...
Showing posts with label RA. Show all posts
Showing posts with label RA. Show all posts
Friday, August 9, 2013
Monday, August 5, 2013
Pain Pain Go Away...
"If you step on a crack, you break your mother's back!" -- unknown
That was a childhood ditty that one heard when growing up on the streets of Brooklyn. Ain't it sweet? The cracks referred to are cracks in the concrete sidewalks. One had to be very deft, or have extremely small feet, to not step on a crack. The way my back feels I'd swear my kids are stepping on cracks, but we don't have any sidewalks. So, I guess I'll have to chalk it up to something else. I just don't know what.
At first I thought I developed back pain because I tried using rubber bands instead of weights to do arm lifts. Because of the Rheumatoid Arthritis in my hands, I cannot hold weights any more so thought the bands would be a good substitute. Afterwards I felt the burn in my muscles and was happy. But then a couple of days later the back pain started. I don't remember pulling my back out, which to me would be a sudden powerful pain. Rather, my pain started with a mild nudge every day for the past two weeks culminating into a knock-out punch when I tried to move upon waking up yesterday morning. I literally could not get out of bed, and had to call upon the help of my husband to remove the puppy from my head and gently place me in an upright position. Let me tell you, that is some scary shit -- not being able to fend off a puppy!
My RA pain has always been bad in the mornings, but usually involves my feet. This is a new and most unwelcome development. It took me a while to get the strength to stand and wobble to the table. I tried stretching as much as I could which wasn't much, and asked my husband to run a hot shower. That seemed to help a lot. I took a couple of Ibuprofrens as well. Screw my liver. I needed the pain to be bearable. It became tolerable, but every time I tried to get in and out of my car I was reminded that it still existed. I laugh at myself now thinking that I was *this close* to buying a 2001 Jaguar the day before. There's no way I would be able to be comfortable in a vehicle that's lower to the ground than the one I'm driving in now. But damn, she was sweet looking.
Anyway, I don't even know if this back pain is from RA or if it's something worse. Yes, there are worse diseases than RA. And since I feel like my rheumy doesn't seem to be too concerned with me after our previous "disagreement," I thought now is the time to seek a second opinion. I asked around, Googled, etc. and found there were two specialists that most folks recommend, mine, and a doctor from Carilion. As soon as I was able to make my way out of bed I called the other doctor's office to make an appointment. They wouldn't make an appointment for me without a referral from my rheumy. I don't want my doctor to know. I just want a second opinion. The nurse suggested I go to my family doctor then and get a written referral from him even though he's associated with LG, not Carilion. She then added a by the way -- I wouldn't be able to see the doctor I asked for because he wasn't taking any new patients, but I could see a Nurse Practitioner instead. Ummm, no. The whole point of seeing this particular doctor was because he came recommended, and by the way, why do I need a referral then to see a NP??? Huh, huh?!
So, I called my rheumy's office this morning and explained to the front desk what was going on. I told her I needed to know if this is related to RA and come on it, or perhaps its due to something else and need to call my family doctor instead. She said she would relay the message to my doctor's nurse and they would get back to me right away. I figure "right away" means at the end of the day. I really feel like I'm Elaine from Seinfeld when she couldn't get a doctor to see her because of the notes in her file of her being a "difficult" patient. I didn't think she was difficult at all!
I really have to learn how to control my tongue. This valley is too small for my big attitude....
"Pain pain, go away, come back another day..." -- Me.
That was a childhood ditty that one heard when growing up on the streets of Brooklyn. Ain't it sweet? The cracks referred to are cracks in the concrete sidewalks. One had to be very deft, or have extremely small feet, to not step on a crack. The way my back feels I'd swear my kids are stepping on cracks, but we don't have any sidewalks. So, I guess I'll have to chalk it up to something else. I just don't know what.
At first I thought I developed back pain because I tried using rubber bands instead of weights to do arm lifts. Because of the Rheumatoid Arthritis in my hands, I cannot hold weights any more so thought the bands would be a good substitute. Afterwards I felt the burn in my muscles and was happy. But then a couple of days later the back pain started. I don't remember pulling my back out, which to me would be a sudden powerful pain. Rather, my pain started with a mild nudge every day for the past two weeks culminating into a knock-out punch when I tried to move upon waking up yesterday morning. I literally could not get out of bed, and had to call upon the help of my husband to remove the puppy from my head and gently place me in an upright position. Let me tell you, that is some scary shit -- not being able to fend off a puppy!
My RA pain has always been bad in the mornings, but usually involves my feet. This is a new and most unwelcome development. It took me a while to get the strength to stand and wobble to the table. I tried stretching as much as I could which wasn't much, and asked my husband to run a hot shower. That seemed to help a lot. I took a couple of Ibuprofrens as well. Screw my liver. I needed the pain to be bearable. It became tolerable, but every time I tried to get in and out of my car I was reminded that it still existed. I laugh at myself now thinking that I was *this close* to buying a 2001 Jaguar the day before. There's no way I would be able to be comfortable in a vehicle that's lower to the ground than the one I'm driving in now. But damn, she was sweet looking.
Anyway, I don't even know if this back pain is from RA or if it's something worse. Yes, there are worse diseases than RA. And since I feel like my rheumy doesn't seem to be too concerned with me after our previous "disagreement," I thought now is the time to seek a second opinion. I asked around, Googled, etc. and found there were two specialists that most folks recommend, mine, and a doctor from Carilion. As soon as I was able to make my way out of bed I called the other doctor's office to make an appointment. They wouldn't make an appointment for me without a referral from my rheumy. I don't want my doctor to know. I just want a second opinion. The nurse suggested I go to my family doctor then and get a written referral from him even though he's associated with LG, not Carilion. She then added a by the way -- I wouldn't be able to see the doctor I asked for because he wasn't taking any new patients, but I could see a Nurse Practitioner instead. Ummm, no. The whole point of seeing this particular doctor was because he came recommended, and by the way, why do I need a referral then to see a NP??? Huh, huh?!
So, I called my rheumy's office this morning and explained to the front desk what was going on. I told her I needed to know if this is related to RA and come on it, or perhaps its due to something else and need to call my family doctor instead. She said she would relay the message to my doctor's nurse and they would get back to me right away. I figure "right away" means at the end of the day. I really feel like I'm Elaine from Seinfeld when she couldn't get a doctor to see her because of the notes in her file of her being a "difficult" patient. I didn't think she was difficult at all!
I really have to learn how to control my tongue. This valley is too small for my big attitude....
"Pain pain, go away, come back another day..." -- Me.
Sunday, July 28, 2013
My Poor Middle Finger
I totally took you for granted. I am sorry. I never realized how much I depended upon you until you reminded me. The pain radiates from you and I know you're not the cause, but the effect. There's nothing I can do to help you heal so instead I try to ignore you. The silent treatment doesn't work. I try to take you out of the equation, but you keep slipping in, pushing in, reminding me you are the one I use the most. Again, I never realized it, until now.
I salute you my middle finger...
For the last four days my body has been in more pain than usual, especially my hands and feet. I know "they" say the weather has nothing to do with Rheumatoid Arthritis, but "I" say differently. As the barometric pressure falls, my pain rises. I'd continue on the usefulness of my middle finger, but my hands hurt too much to type.
This is what I think of RA...
I salute you my middle finger...
For the last four days my body has been in more pain than usual, especially my hands and feet. I know "they" say the weather has nothing to do with Rheumatoid Arthritis, but "I" say differently. As the barometric pressure falls, my pain rises. I'd continue on the usefulness of my middle finger, but my hands hurt too much to type.
This is what I think of RA...
Yes, I use my middle finger for many things...
Tuesday, August 16, 2011
RA - One Year Later
It's been a year since I was first diagnosed with rheumatoid arthritis. I guess the worst part of it came last week when I saw my rheumatologist and asked him, "So when do I get off the Methotrexate?" and he answered, "Never." What...the...hell?
After I picked my jaw up off the floor I reminded him that during my initial visit a year ago he claimed we could put the RA into remission by dosing me heavy with the horrible MTX. Was that just a ploy so I wouldn't feel "devasted" by my diagnosis and sink into deep depression? He countered some people do go into remission, but it's very rare. In order to qualify that someone is in remission, my RA level and inflammation level would have to be "normal" and I would have to be pain free for over a year. I am nowhere near that.
I finally stopped taking prednisone three weeks ago and the consequences of that action have enabled me to sleep better, but also have raised my inflammation and pain levels. It's a damned if you do, damned if you don't. And damned, I don't want to be on it anymore, so I am dealing with the pain as best as I can.
To look at me you wouldn't know I have this disease unless you could read something in my eyes, or notice I cannot open a jar without help. You wouldn't see my struggle to get out of bed some mornings, but my husband does. I try not to complain but he knows when I'm having a flare up. He's been very good with it, although it gets really annoying when he still asks me, "What can I do to help you?" There is nothing you can do to help me. It really irks me when he follows up with, "I could never imagine that you would get something like this." You don't have to "imagine" it, it's happened. "There's got to be something you can take."
There are no magic pain pills. I can't even take Tylenol because the MTX is hard on the liver and so is acetaminophen. And so far I've been "lucky" that my liver has been able to handle the MTX. I go for blood work every other month to make sure. It seems my pattern of taking the chemo pills on Monday and then waiting until Thursday evening to drink is working. I've pushed the envelope a little and allow myself to imbibe throughout the weekend, clearing out my body for 24 hours before the Monday MTX dosage. But I can't drink as much as before, and not only because of the potential liver damage. My blood counts are so low that my body reacts as if every drink is equal to two drinks. I know exactly how many glasses of wine I could tolerate. So far, so good.
Another side effect of taking a chemo medication is loss of hair. Lately I've noticed I've been losing more strands than usual. It could be a seasonal thing so I'm not going to panic, yet. If it happens I will buy a wig in every color and have fun with it. In the beginning, I used to keep a pain chart based on the weather, humidity, and barometric pressure, trying to determine if I could see a pattern. Once I realized even if I did find a common link I still wouldn't be able to do anything about it, I figured I was just wasting my time. And if there's one thing RA has taught me is that time is precious and not meant to be wasted.
When I say I don't have a year to spare I mean it. I live on the edge of wondering if today is the day I wake up and I'm rendered severely disabled. Yet, in my glorious belief in miracles, I know I can be cured. I believe in healing. Don't know when, don't know how, but do know life is meant to live now. Waiting for that "special" occasion to wear that "special" dress will only gather dust. Everyday is special.
Nope, I don't have a year to spare. And that's another reason I've decided not to go the traditional publishing route for my book. Too long to print. Deadlines? Yeah, I want to set my own. And that trip out West I've always dreamed about? That's happening next year. I don't want to drive a Hover-round along the Grand Canyon's rim. I'm hiking it. I'm taking a month to drive tothe West and visit all the locations I've always felt drawn to. No more waiting for the, "We'll go out West after -- insert parental obligation here -- is finished."
So, on this RA anniversary -- physically, I feel much better than I did one year ago when I thought I had bone cancer. RA sucks, but it's nothing I can't handle. There's much worse diseases out there. Mentally? Better than I felt a year ago. It's liberating when you give into your heart.
Monday, January 17, 2011
The Warranty Expires at 50
When I spoke to my cousin while he was recuperating from surgery in a hospital bed he said, "It's like once we turned 50 the warranty expired and everything broke." I couldn't agree more. The poor thing was groggy from undergoing surgery to repair his arm which he screwed up pretty bad after slipping in the shower and crashing through the glass doors. His house was built the same year as mine, 1957 and he had his original doors. We had them for a couple of years until we had our own "shower door incident." As my daughter was taking a shower one of them fell on her (don't even ask how that happened because we still haven't been able to figure it out.) She was stuck against the wall and screamed for us. When my husband rescued her he then ripped the doors and metal track off with his bare hands. "I always knew these doors would be a problem!" Luckily the glass never shattered on her and she escaped unharmed.
Safety glass was a thing of science fiction back in the 50's so when my cousin went crashing through his doors shards of glass sliced so deeply into his arm that he had to push his own bicep in. Standing over 6'7" he's not a small guy so it didn't surprise me that over a dozen EMT techs, police and firemen had to dislodge him from the metal frame that was keeping him prisoner. Only by the grace of God and his quick thinking to use a towel to make a torniquet to stop the massive bleeding is he still around today. One EMT told him, "With all the blood you lost, if you were a smaller guy you'd be dead right now." He has another surgery scheduled in a couple of days to have some nerves removed from his leg and placed in his arm so he could get feeling back in some of his fingers. "Did you ever think we'd be the ones saying, 'I've fallen and I can't get up?'" he joked. No, I never did.
The way I've been feeling lately I keep having visions of driving around in one of those motorized Hover-round vehicles you see on the commercial. Only difference is in my vision I gun the damn thing right over the edge of the Grand Canyon. I'm not enjoying getting "old." My mind is still sharp, I think, but my body won't do what my mind wants it to do. There are some days when my hands cannot hold three pound weights. I'm just waiting for the day my fingers slip open and have the weight crash onto the toes that hurt when stepping on the ground.
I've been working on a cross-stitch for my grandmother. The package says it's a "weekend project." Between my eyes blurring and my fingers stiffening it's already taken three weeks and I'm only half done. At the rate I'm going my grandmother will be 101 before I finish it. Yes, she's going to be 100, and still has all her faculties. Heck, she lived on her own until 95 and was still cooking Sunday suppers to whoever would go to her house. I got some of her genes, but I doubt I got the longevity one.
Typing and even texting is more of a chore now. While texting just a couple of letters in response to my daughter, "k, cya," my thumb hurts. As I massaged it I noticed the RA damage is starting to show. Damn, this is a quick-moving disease. I thought the methotrexate was supposed to stop the joint damage. Besides making me feel like I was hit by a truck two days out of the week, filling my mouth with a metal taste, possibly destroying my liver and causing me to stop self-medicating myself via alcohol, I'm beginning to doubt the chemo pills are doing any good like I thought they were. I fear my body has built up a resistance to it already. I've doubled up once already and dread my doctor will double it up again after he sees my lack of progress at my next visit.
I sometimes think my biggest mistake was "cleaning up" years ago. Thanks kids! All I know is that when I was staying out til all hours and partying, other than a brief hang-over, I felt fine. I ate what I wanted, when I wanted and still remained thin, had luxurious curly hair, was never tired, and felt healthy as a gazelle running from a lion. And I never ever went to doctors. Those days are long gone. Now I feel like the the gazelle that has become feeble and is left behind by the pack, just waiting to be devoured.
I wish someone had offered me the extended body warranty...for a change I would have taken it.
Safety glass was a thing of science fiction back in the 50's so when my cousin went crashing through his doors shards of glass sliced so deeply into his arm that he had to push his own bicep in. Standing over 6'7" he's not a small guy so it didn't surprise me that over a dozen EMT techs, police and firemen had to dislodge him from the metal frame that was keeping him prisoner. Only by the grace of God and his quick thinking to use a towel to make a torniquet to stop the massive bleeding is he still around today. One EMT told him, "With all the blood you lost, if you were a smaller guy you'd be dead right now." He has another surgery scheduled in a couple of days to have some nerves removed from his leg and placed in his arm so he could get feeling back in some of his fingers. "Did you ever think we'd be the ones saying, 'I've fallen and I can't get up?'" he joked. No, I never did.
The way I've been feeling lately I keep having visions of driving around in one of those motorized Hover-round vehicles you see on the commercial. Only difference is in my vision I gun the damn thing right over the edge of the Grand Canyon. I'm not enjoying getting "old." My mind is still sharp, I think, but my body won't do what my mind wants it to do. There are some days when my hands cannot hold three pound weights. I'm just waiting for the day my fingers slip open and have the weight crash onto the toes that hurt when stepping on the ground.
I've been working on a cross-stitch for my grandmother. The package says it's a "weekend project." Between my eyes blurring and my fingers stiffening it's already taken three weeks and I'm only half done. At the rate I'm going my grandmother will be 101 before I finish it. Yes, she's going to be 100, and still has all her faculties. Heck, she lived on her own until 95 and was still cooking Sunday suppers to whoever would go to her house. I got some of her genes, but I doubt I got the longevity one.
Typing and even texting is more of a chore now. While texting just a couple of letters in response to my daughter, "k, cya," my thumb hurts. As I massaged it I noticed the RA damage is starting to show. Damn, this is a quick-moving disease. I thought the methotrexate was supposed to stop the joint damage. Besides making me feel like I was hit by a truck two days out of the week, filling my mouth with a metal taste, possibly destroying my liver and causing me to stop self-medicating myself via alcohol, I'm beginning to doubt the chemo pills are doing any good like I thought they were. I fear my body has built up a resistance to it already. I've doubled up once already and dread my doctor will double it up again after he sees my lack of progress at my next visit.
I sometimes think my biggest mistake was "cleaning up" years ago. Thanks kids! All I know is that when I was staying out til all hours and partying, other than a brief hang-over, I felt fine. I ate what I wanted, when I wanted and still remained thin, had luxurious curly hair, was never tired, and felt healthy as a gazelle running from a lion. And I never ever went to doctors. Those days are long gone. Now I feel like the the gazelle that has become feeble and is left behind by the pack, just waiting to be devoured.
I wish someone had offered me the extended body warranty...for a change I would have taken it.
Tuesday, November 23, 2010
Living With a Thankful Heart
As usually happens every year around this time life gets extremely busy...it's a good busy though. Well, it would be a better busy if there weren't so many darn doctor appointments filling the upcoming days. With my absurdly high deductible I gotta get 'em in before the end of the year.
I saw my rheumotologist today. I really like him. He is so personable. As soon as he saw me he said, "I was just thinking about you last night." He wasn't thinking about my health he was thinking about our last conversation regarding his teen aged daughter starting to learn how to drive. "I signed her up at the driving school, she really likes it. After the holidays I'll probably start looking at cars for her so I will call you so you can check it out for me. How's your daughter doing with the Saturn?" Wow, he remembered our conversation from over two months ago. I was impressed. Quite a difference from Dr. DoNothing who doesn't even remember me the next day!
Anyway, Dr. DoNothing's office never sent over the blood results as they were supposed to. I knew they would be incompetent so I went in person yesterday and walked out with them in hand. Naturally they assured me they would fax them right over to my rheumy and naturally I knew they wouldn't so took matters into my own hands. I will never use their lab again.
When I saw my numbers I was quite pleased. My cholesterol numbers have nothing to do with my rheumy but they were on the same sheet. I was supposed to see Dr. DoNothing yesterday before the rheumy but he had cancelled last week -- do I get a no-show fee? My triglycerides dropped from 575 to 155. My cholesterol level dropped from 249 to 183, and my good cholesterol level increased from 35 to 37. This happened over an eight week period. I've been on one cholesterol pill and the no/low sugar diet. I thought I was doing great weight-wise until I stepped on the scale at the rheumy's office. It wasn't as great as my scale showed -- I felt like I went to the butcher who keeps his thumb on the scale.
The real numbers my rheumy wanted to see were from the complete blood count and liver profile. Everything was normal. In fact I increased my red blood count so that I'm no longer anemic. I attribute it to the Vitamin B-12 and Vitamin B Complex with C regimen I added. I needed something to give me energy and those pills along with the folic acid seems to be a good mix.
Unfortunately the RA has not decreased and when the doctor poked and prodded me I jumped a wee bit. He amped up the MTX to 15mg from 10mg. I told him how I felt wiped out on the day and day after I took them. He said that was to be expected and I could double the folic acid on those days if needed. I could handle it, I just wanted to make sure it was "normal." Same with the pain -- I can handle it as long as it's "normal." He said I could take Tylenol and thought my wine cheat nights on Thursday and Friday were well thought out. As long as the liver keeps functioning I can keep it up.
I don't have to go back until twelve weeks and hope my next dosage doesn't do me in too much. Because of the RA I've adjusted my writing schedule so that as soon as I finish breakfast I jump right on the computer. I strive to get as much done as possible before my bones hurt too much or I become too weak. Once I have lunch I'm done with writing. So the blog has been and will continue to be taking a back seat for a while. The goal is to have revision # 3 of my book completed before Christmas. Then I can put it aside and enjoy the holidays and start the new year with a final fresh look. I'm so thrilled to be so near the finish line. With all the recent progress I've made I really think RA has been a blessing. I am living with a thankful heart...
Have a happy Thanksgiving and I'll see ya when I see ya...
I saw my rheumotologist today. I really like him. He is so personable. As soon as he saw me he said, "I was just thinking about you last night." He wasn't thinking about my health he was thinking about our last conversation regarding his teen aged daughter starting to learn how to drive. "I signed her up at the driving school, she really likes it. After the holidays I'll probably start looking at cars for her so I will call you so you can check it out for me. How's your daughter doing with the Saturn?" Wow, he remembered our conversation from over two months ago. I was impressed. Quite a difference from Dr. DoNothing who doesn't even remember me the next day!
Anyway, Dr. DoNothing's office never sent over the blood results as they were supposed to. I knew they would be incompetent so I went in person yesterday and walked out with them in hand. Naturally they assured me they would fax them right over to my rheumy and naturally I knew they wouldn't so took matters into my own hands. I will never use their lab again.
When I saw my numbers I was quite pleased. My cholesterol numbers have nothing to do with my rheumy but they were on the same sheet. I was supposed to see Dr. DoNothing yesterday before the rheumy but he had cancelled last week -- do I get a no-show fee? My triglycerides dropped from 575 to 155. My cholesterol level dropped from 249 to 183, and my good cholesterol level increased from 35 to 37. This happened over an eight week period. I've been on one cholesterol pill and the no/low sugar diet. I thought I was doing great weight-wise until I stepped on the scale at the rheumy's office. It wasn't as great as my scale showed -- I felt like I went to the butcher who keeps his thumb on the scale.
The real numbers my rheumy wanted to see were from the complete blood count and liver profile. Everything was normal. In fact I increased my red blood count so that I'm no longer anemic. I attribute it to the Vitamin B-12 and Vitamin B Complex with C regimen I added. I needed something to give me energy and those pills along with the folic acid seems to be a good mix.
Unfortunately the RA has not decreased and when the doctor poked and prodded me I jumped a wee bit. He amped up the MTX to 15mg from 10mg. I told him how I felt wiped out on the day and day after I took them. He said that was to be expected and I could double the folic acid on those days if needed. I could handle it, I just wanted to make sure it was "normal." Same with the pain -- I can handle it as long as it's "normal." He said I could take Tylenol and thought my wine cheat nights on Thursday and Friday were well thought out. As long as the liver keeps functioning I can keep it up.
I don't have to go back until twelve weeks and hope my next dosage doesn't do me in too much. Because of the RA I've adjusted my writing schedule so that as soon as I finish breakfast I jump right on the computer. I strive to get as much done as possible before my bones hurt too much or I become too weak. Once I have lunch I'm done with writing. So the blog has been and will continue to be taking a back seat for a while. The goal is to have revision # 3 of my book completed before Christmas. Then I can put it aside and enjoy the holidays and start the new year with a final fresh look. I'm so thrilled to be so near the finish line. With all the recent progress I've made I really think RA has been a blessing. I am living with a thankful heart...
Have a happy Thanksgiving and I'll see ya when I see ya...
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