I had to give in and start the amnitriptoline again last night. I found it really helps with easing the pain associated with fibro, which, when flaring, sends my RD in overdrive. It is nice to _not_ have a massive headache right now.
A cool thing happened earlier, when ordering my Orencia. The company researched and found out that we can do a three month supply at a time. I could not be happier. I love when things are made easier.
I am also happy that pain is minimal today. Regardless of how I am feeling emotionally, I am not screaming in pain today.
I think of all the times I get told to try this product or that product. I understand some of the people are genuinely concerned about how I am feeling and trying to find a way to keep me out of pain. Others, they are trying to make money with new products that are available, but not regulated.
The last time I tried one of these products, I ended up with a huge rash on my chest. It was TERRIBLE. I think it conflicted with my RD medications. That was almost eight months ago, right before my surgery. Thankfully the medicines I took helped it go away.
I find that as long as I can stay positive, and keep my depression at bay, my RD pain is at the low end. I just can't tell people enough how important having a positive attitude toward EVERYTHING can make a difference.
Thursday, February 13, 2014
Wednesday, February 12, 2014
Weather, Emotions, and Headaches, OH MY
Our weather has been "stable" lately. It has been freezing, literally below 32*F, but the pressure has not been crazy. We are starting to warm up over the next few days, and it looks as if it will be steady for about six days. That will be helpful, too.
Don't get me wrong, my joints still hurt, but they don't shoot pain through me, making simple tasks unbearable.
Like most people with any type of chronic pain or AI disease, I fluctuate between different emotions. Guilt, depression, helplessness, negativity as well as the elation, love, positive factors, etc. I still do not know which one feeds the other, though. I know when my pain increases, my "down" emotions become more prevalent and harder to manage. But, on the other hand, I can feel the "up" emotions and still have a significant amount of pain. However, when external factors hit me like a ton of bricks, I find the joints scream louder than normal.
Then, with all the external stress (negative), I get massive headaches. They are terrible. Some stem from the pain I feel in the joints of my neck, others from the tight muscles in my shoulders/neck, and then of course, we can't rule out the sinus factor, since there are several strands of the cold & flu running around the schools, and of course, coming home.
I know life will always throw wrenches into my wheels. I try my hardest to just keep going, hoping the wrenches will find their own way out so I can continue with the "have to's". But, sometimes it is so big and tough, I can't blow it off and break down. I am just fortunate and happy that the recent "wrench" came when the weather was not being wonky and when my over-all pain was not as bad as it could have been.
Don't get me wrong, my joints still hurt, but they don't shoot pain through me, making simple tasks unbearable.
Like most people with any type of chronic pain or AI disease, I fluctuate between different emotions. Guilt, depression, helplessness, negativity as well as the elation, love, positive factors, etc. I still do not know which one feeds the other, though. I know when my pain increases, my "down" emotions become more prevalent and harder to manage. But, on the other hand, I can feel the "up" emotions and still have a significant amount of pain. However, when external factors hit me like a ton of bricks, I find the joints scream louder than normal.
Then, with all the external stress (negative), I get massive headaches. They are terrible. Some stem from the pain I feel in the joints of my neck, others from the tight muscles in my shoulders/neck, and then of course, we can't rule out the sinus factor, since there are several strands of the cold & flu running around the schools, and of course, coming home.
I know life will always throw wrenches into my wheels. I try my hardest to just keep going, hoping the wrenches will find their own way out so I can continue with the "have to's". But, sometimes it is so big and tough, I can't blow it off and break down. I am just fortunate and happy that the recent "wrench" came when the weather was not being wonky and when my over-all pain was not as bad as it could have been.
Tuesday, February 4, 2014
Frustration
With 2 Feb 14 being the 2nd annual Rheumatoid Awareness Day, I had posted various data on my Facebook page. Posts that were meant to educate family/friends or at least to help them understand.
I get a call yesterday from a relative, checking in to see how everyone is feeling. Somewhere in the conversation, my Rheumatoid Disease (arthritis) became the topic.
At one point, the relative said something about it still being a factor and that it will get better. I explained that this isn't just arthritis. That my immune system is attacking my body and that my internal organs are affected as well. That there is no known cure. I even explained how one of my paternal aunts passed away from another autoimmune disease.
You know, stuff I post and explain a lot. But "I haven't gotten to talk to you." was the reply. Ummmm. Yes, there have been plenty of conversations about it. Especially since I am going on my 4th year after finally being diagnosed. Even my husband has explained it to people/family.
I just wanted to bang my head against the desk.
I try very hard to educate people, I guess there are those that just don't want to or care to be educated.
As for my RD pain, today is a good day. Even with the wonky weather we had last week, we are finally staying cold for a while. Most would think it is bad, but as long at the barometric pressure is steady, pain is minimal. I really hate that the steroid shot helped. But, I know sometimes we have to do things that are good for us.
I get a call yesterday from a relative, checking in to see how everyone is feeling. Somewhere in the conversation, my Rheumatoid Disease (arthritis) became the topic.
At one point, the relative said something about it still being a factor and that it will get better. I explained that this isn't just arthritis. That my immune system is attacking my body and that my internal organs are affected as well. That there is no known cure. I even explained how one of my paternal aunts passed away from another autoimmune disease.
You know, stuff I post and explain a lot. But "I haven't gotten to talk to you." was the reply. Ummmm. Yes, there have been plenty of conversations about it. Especially since I am going on my 4th year after finally being diagnosed. Even my husband has explained it to people/family.
I just wanted to bang my head against the desk.
I try very hard to educate people, I guess there are those that just don't want to or care to be educated.
As for my RD pain, today is a good day. Even with the wonky weather we had last week, we are finally staying cold for a while. Most would think it is bad, but as long at the barometric pressure is steady, pain is minimal. I really hate that the steroid shot helped. But, I know sometimes we have to do things that are good for us.
Monday, February 3, 2014
Ground Hog --- I mean Rheumatoid Disease Awareness Day
Yesterday was the 2nd annual Rheumatoid Disease/Arthritis Awareness Day. To help raise awareness for the disease, I shared many posts from RA Warrior and the RPF. There is a lot of data between both of them to help people understand. I also posted a status or two about RD (RA). It felt good to post the information. If just ONE person read it and took the time to understand, that is one more person who is aware of the battle many of us go through daily. Also, if just ONE person clicked through to the RPF or RA Warrior site/blog, it is another person who "gets" it. Hopefully, those that did understand or got it, shared the information with others.
My shot from the doctor is finally working. It took longer than normal. I also think my Orencia & Methotrexate helped greatly. Even though we are below freezing, my joints are starting to be nice, once again.
My SED rate and C-Reactive proteins were elevated. I don't think there is a time they were ever NOT elevated. Usually both, but on rare visits, one or the other would be above normal limits.
I found another annoyance that RD has given me. When my joints are swollen, they seem to pinch or irritate the tendons and ligaments. Sadly, that travels through my limbs, back or neck. I can tell the swelling is slowly subsiding in my shoulders and hips, because the tendons/ligaments are no longer screaming at the top of their "lungs" at me, they are only making a small noise. It may also have helped that I pretty much just relaxed yesterday.
As for Ground Hog Day -- it's kind of a cute little play on words, I believe. The movie "Ground Hog Day" was about a newscaster who relived the same day, over and over until the finally "got it right." For people with RD or any autoimmune disease/chronic illness, we don't live the same thing every day, but we do, however, experience pain daily, and sometimes, it feels as if we are living our own version of the movie.
Today is a decent day so far. Time to get on with the rest of my day.
My shot from the doctor is finally working. It took longer than normal. I also think my Orencia & Methotrexate helped greatly. Even though we are below freezing, my joints are starting to be nice, once again.
My SED rate and C-Reactive proteins were elevated. I don't think there is a time they were ever NOT elevated. Usually both, but on rare visits, one or the other would be above normal limits.
I found another annoyance that RD has given me. When my joints are swollen, they seem to pinch or irritate the tendons and ligaments. Sadly, that travels through my limbs, back or neck. I can tell the swelling is slowly subsiding in my shoulders and hips, because the tendons/ligaments are no longer screaming at the top of their "lungs" at me, they are only making a small noise. It may also have helped that I pretty much just relaxed yesterday.
As for Ground Hog Day -- it's kind of a cute little play on words, I believe. The movie "Ground Hog Day" was about a newscaster who relived the same day, over and over until the finally "got it right." For people with RD or any autoimmune disease/chronic illness, we don't live the same thing every day, but we do, however, experience pain daily, and sometimes, it feels as if we are living our own version of the movie.
Today is a decent day so far. Time to get on with the rest of my day.
Thursday, January 30, 2014
Steroid shot - for the win
I suppose I should have know the pain I was feeling was more from RD than it was from fibro, however, like many people I know, I am too stubborn to ask for help.
I think I have a love/hate relationship with the shot I received yesterday. It seems to work from the head down, making its first impact with my emotions. Little things were putting tears in my eyes last night.
I felt it start working it's magic as the day progressed and I definitely noticed a HUGE difference this morning.
I was able to make fists with my hands. I haven't been able to do that after waking up in about two months. I still have some pain in the knuckles of my pinkies, but they both have been injured in the past, so it is to be expected. My neck is also being very kind. The pain there went from a 4 (0-5 scale) to a 1. My lower back, which I haven't felt pain since recovering from surgery, was at a 5. I wanted to use my walker, but refused because of a silly word called "pride." Today it is at a 2. My hips, knees and ankles, all around 3-4 are at 0-1. My feet, are a slightly different story. My toes refuse to be cooperative with the medicine. I am thinking it will take a bit longer. I went from a 5+ on the pain in my toes/feet to a 3-4. Maybe because I walk so much, they are just tired.
I also listened to my rheum last night by taking an amnitriptoline. I am still groggy from the medication, but I will manage. The "have-to's" generally keep me going.
The Texas weather roller coaster is still running. I keep asking the ride operator to let me off for a little while, but get denied. Today is extremely windy. So even though the high is to be 60*F, it will not feel that way. Then, starting tomorrow night, we are expecting some sort of rain through next Wednesday. Our high for Friday - Sunday is between 65-75. Then, guess what!? We drop back down to the 40's. I wish the barometer in my body would lose its battery so the pain wouldn't be as bad, but, alas, it is better than an Energizer.
I think I have a love/hate relationship with the shot I received yesterday. It seems to work from the head down, making its first impact with my emotions. Little things were putting tears in my eyes last night.
I felt it start working it's magic as the day progressed and I definitely noticed a HUGE difference this morning.
I was able to make fists with my hands. I haven't been able to do that after waking up in about two months. I still have some pain in the knuckles of my pinkies, but they both have been injured in the past, so it is to be expected. My neck is also being very kind. The pain there went from a 4 (0-5 scale) to a 1. My lower back, which I haven't felt pain since recovering from surgery, was at a 5. I wanted to use my walker, but refused because of a silly word called "pride." Today it is at a 2. My hips, knees and ankles, all around 3-4 are at 0-1. My feet, are a slightly different story. My toes refuse to be cooperative with the medicine. I am thinking it will take a bit longer. I went from a 5+ on the pain in my toes/feet to a 3-4. Maybe because I walk so much, they are just tired.
I also listened to my rheum last night by taking an amnitriptoline. I am still groggy from the medication, but I will manage. The "have-to's" generally keep me going.
The Texas weather roller coaster is still running. I keep asking the ride operator to let me off for a little while, but get denied. Today is extremely windy. So even though the high is to be 60*F, it will not feel that way. Then, starting tomorrow night, we are expecting some sort of rain through next Wednesday. Our high for Friday - Sunday is between 65-75. Then, guess what!? We drop back down to the 40's. I wish the barometer in my body would lose its battery so the pain wouldn't be as bad, but, alas, it is better than an Energizer.
Wednesday, January 29, 2014
Back Surgery - June 2013
I have been suffering from back pain since I was nine years old. Some of the readers may be asking, "What took so long to get it checked?" And that is a GREAT question.
I have had my back checked several times over the years. Many doctors said it was just stressed muscles or wearing the wrong shoes. Twelve years ago, I found a doctor who listened. Even though X-Rays were inconclusive (according to the radiologist), he suggested I see a chiropractor.
I went to our local chiropractor. He was awesome. He had just opened the business and was very personable with his patients. He held educational seminars prior to the first treatment and even called after treatments to ensure things were okay.
The X-Rays he took showed definite problems in the lumbar. I started treatment, and all was working out well. I would get adjusted, do my exercises and end on the "traction table" (I call it the rolly table, because a wheel rolled up and down my spine.)
Eventually, as it happens with medicine and just life in general, new technology was introduced. It was a machine called the turbosonic. The job of the machine was essentially to vibrate a platform at varying frequencies while I stood on it for 10 minutes. Easy peasy, right?
Well, after doing that for a few months, a couple times each month, I went back to the rolly table after those 10 minutes on turbo. The first time back on rolly, the wheel got to my lower back and it went POP. I had my kids get the office admin who immediately turned off rolly. Doc had to help me off the table and after paying my co-pay, I went home and took the PM version of extra strength acetaminophen.
We continued turbo for a few more months, and again, a really bad day, and I tried rolly, once more. This time, the POP was heard by my daughter and drew tears from my eyes. Repeat the above post rolly for that day.
I continued to see my doc, because I trusted him. We continued adjustments and turbo, until I could no longer handle feeling my clothing rubbing on my skin during the 10 minutes of bouncing.
I then found my rheum doctor. Have I told you I love her yet? Well, I do. After we tamed the RD symptoms, we discovered my back was in more pain than I had thought originally. I could not walk more than 10 feet without pain, nor could I move my toes without tears falling down my cheeks because of pain.
She sent me to PT, but it didn't work. She then suggested I talk to my primary care doc (who works with my rheum and is just as awesome) to see what could be done. Primary care doc set me up with an orthopedic surgeon (who, also, is spectacular). He took X-Rays, then evaluated me. Before he gave me the diagnosis, during the evaluation, he noticed my lack of balance. So, I went back for neck X-Rays.
The result from my back: I had Spondylolisthesis. A familiar word to me, as I had seen it written on a sticky note on my chart at the chiropractor's office. He said, not only did I have that, but my disk was gone between L5 & L6. SERIOUSLY?
The result from my neck: Because no one listened to my cries about RD before my current rheum, I have sever damage above C1. To top it off, C3 and C5 are pushing C4 out of the family. He said this could be taken care of at a later date.
As for my back, Our first try at fixing this was an epidural injection in the lumbar. I was supposed to have three treatments, but after two, and talking to the doc who administered them, we concluded they were ineffective.
Option two was surgery. My hubby said, "Get it done as soon as you can, probably right after school ends."
So, on June 24, 2013, I had surgery on my back. He went in through my ab to remove and replace the disk and screw it in place. I was then turned over and he straightened out my lumbar, screwed and hinged it.
Within three months, my rheum, primary care doc and orthopedic surgeon were elated at how well I healed and the progress I made. Even the physical therapist I saw couldn't believe what I could do. Every single one of these individuals attributed it to one thing - my positive attitude about the entire situation.
So, that's the surgery in a nut shell.
I have had my back checked several times over the years. Many doctors said it was just stressed muscles or wearing the wrong shoes. Twelve years ago, I found a doctor who listened. Even though X-Rays were inconclusive (according to the radiologist), he suggested I see a chiropractor.
I went to our local chiropractor. He was awesome. He had just opened the business and was very personable with his patients. He held educational seminars prior to the first treatment and even called after treatments to ensure things were okay.
The X-Rays he took showed definite problems in the lumbar. I started treatment, and all was working out well. I would get adjusted, do my exercises and end on the "traction table" (I call it the rolly table, because a wheel rolled up and down my spine.)
Eventually, as it happens with medicine and just life in general, new technology was introduced. It was a machine called the turbosonic. The job of the machine was essentially to vibrate a platform at varying frequencies while I stood on it for 10 minutes. Easy peasy, right?
Well, after doing that for a few months, a couple times each month, I went back to the rolly table after those 10 minutes on turbo. The first time back on rolly, the wheel got to my lower back and it went POP. I had my kids get the office admin who immediately turned off rolly. Doc had to help me off the table and after paying my co-pay, I went home and took the PM version of extra strength acetaminophen.
We continued turbo for a few more months, and again, a really bad day, and I tried rolly, once more. This time, the POP was heard by my daughter and drew tears from my eyes. Repeat the above post rolly for that day.
I continued to see my doc, because I trusted him. We continued adjustments and turbo, until I could no longer handle feeling my clothing rubbing on my skin during the 10 minutes of bouncing.
I then found my rheum doctor. Have I told you I love her yet? Well, I do. After we tamed the RD symptoms, we discovered my back was in more pain than I had thought originally. I could not walk more than 10 feet without pain, nor could I move my toes without tears falling down my cheeks because of pain.
She sent me to PT, but it didn't work. She then suggested I talk to my primary care doc (who works with my rheum and is just as awesome) to see what could be done. Primary care doc set me up with an orthopedic surgeon (who, also, is spectacular). He took X-Rays, then evaluated me. Before he gave me the diagnosis, during the evaluation, he noticed my lack of balance. So, I went back for neck X-Rays.
The result from my back: I had Spondylolisthesis. A familiar word to me, as I had seen it written on a sticky note on my chart at the chiropractor's office. He said, not only did I have that, but my disk was gone between L5 & L6. SERIOUSLY?
The result from my neck: Because no one listened to my cries about RD before my current rheum, I have sever damage above C1. To top it off, C3 and C5 are pushing C4 out of the family. He said this could be taken care of at a later date.
As for my back, Our first try at fixing this was an epidural injection in the lumbar. I was supposed to have three treatments, but after two, and talking to the doc who administered them, we concluded they were ineffective.
Option two was surgery. My hubby said, "Get it done as soon as you can, probably right after school ends."
So, on June 24, 2013, I had surgery on my back. He went in through my ab to remove and replace the disk and screw it in place. I was then turned over and he straightened out my lumbar, screwed and hinged it.
Within three months, my rheum, primary care doc and orthopedic surgeon were elated at how well I healed and the progress I made. Even the physical therapist I saw couldn't believe what I could do. Every single one of these individuals attributed it to one thing - my positive attitude about the entire situation.
So, that's the surgery in a nut shell.
New Year, New Me
I had my first rheum appointment of the year, today. I really love my rheumatologist, because she listens to what I have to say as well as observes what I am not saying.
First things first. Of course, the nurse (Nicole in this case) has me step on a scale. I truly detest scales, but, what can I do, right? I am down close to 15 pounds since I had surgery last June (I'll go into that soon). So, I wasn't complaining. Even after the holidays, I didn't gain (or lose).
Second, we go to the room and she takes my blood pressure & temp. Again, I'm pleased. 130/89 isn't great, but it is better than I thought it would be considering the amount of pain I have been in since the latest arctic front arrived. Temperature was 98.1. I'm usually 97.6, but that flux is probably due to my hormonal activity.
Third, Nicole and I go over my medications. She is one very intuitive nurse. Being she has worked in the office so long, and also suffers from an AI disease, she can sense when things just aren't "right". "You are walking kind of slow, what's going on today?" So I told her, "I hate this roller coaster weather we are having, my body can't figure out what to do anymore. My feet, knees and hands are taking the brunt end of the pain."
So, it's time for my wonderful rheum to come see me. Her methods are AMAZING. She is so kind, concerned, and truly cares. When she talks to me, I sit in one of the chairs, not on the exam table. I told her what I (we) have gone through over the past two months. Doctors before her, and my primary care physician in the same office, I never felt comfortable discussing various emotional distress or stressful situations. I do not have this problem with her (them). My medical records are on a computer network. So, she sits there, reviews Nicole's notes, and then we talk. She doesn't look at the screen again until after we have concluded the ins and outs of what has transpired. All the while, though, she is typing, while looking at me, commenting on what I tell her. She reminded me that not only does this disease take a toll on my body, but my mind, too. And the same goes for my emotional state, it takes a huge toll on my RD/Fibro. I mentioned to her I used to have this blog, and she suggested I start it again, because I hold a lot inside me, and it isn't good by any standard.
I hopped onto the table, and she did her exam. I told her my feet have been really bad, as have my hands. I could tell she was concerned about my hands because she examined each one twice. Then, she tested all 18 fibro points. Only 1 or 2 were irritated. It was AWESOME for her to press on the ones in my back/hips and NOT have excruciating pain. She then had me take my socks off for my feet examination. Her first note, as I was removing them, was the swelling. Then as she pressed the joints, I nearly teared. Same with my knees. "Well, this is not fibro that is bothering you, this time. Your RD is definitely in a flare." With that, we both decided a steroid shot would work wonders. She also is having me increase the amnitriptoline that I take from only on Friday/Saturday to a couple other times in the week, because I need to relax my body and get the fibro under control before it goes nutty.
That was the extent of my visit today.
I will post about my surgery last June next.
First things first. Of course, the nurse (Nicole in this case) has me step on a scale. I truly detest scales, but, what can I do, right? I am down close to 15 pounds since I had surgery last June (I'll go into that soon). So, I wasn't complaining. Even after the holidays, I didn't gain (or lose).
Second, we go to the room and she takes my blood pressure & temp. Again, I'm pleased. 130/89 isn't great, but it is better than I thought it would be considering the amount of pain I have been in since the latest arctic front arrived. Temperature was 98.1. I'm usually 97.6, but that flux is probably due to my hormonal activity.
Third, Nicole and I go over my medications. She is one very intuitive nurse. Being she has worked in the office so long, and also suffers from an AI disease, she can sense when things just aren't "right". "You are walking kind of slow, what's going on today?" So I told her, "I hate this roller coaster weather we are having, my body can't figure out what to do anymore. My feet, knees and hands are taking the brunt end of the pain."
So, it's time for my wonderful rheum to come see me. Her methods are AMAZING. She is so kind, concerned, and truly cares. When she talks to me, I sit in one of the chairs, not on the exam table. I told her what I (we) have gone through over the past two months. Doctors before her, and my primary care physician in the same office, I never felt comfortable discussing various emotional distress or stressful situations. I do not have this problem with her (them). My medical records are on a computer network. So, she sits there, reviews Nicole's notes, and then we talk. She doesn't look at the screen again until after we have concluded the ins and outs of what has transpired. All the while, though, she is typing, while looking at me, commenting on what I tell her. She reminded me that not only does this disease take a toll on my body, but my mind, too. And the same goes for my emotional state, it takes a huge toll on my RD/Fibro. I mentioned to her I used to have this blog, and she suggested I start it again, because I hold a lot inside me, and it isn't good by any standard.
I hopped onto the table, and she did her exam. I told her my feet have been really bad, as have my hands. I could tell she was concerned about my hands because she examined each one twice. Then, she tested all 18 fibro points. Only 1 or 2 were irritated. It was AWESOME for her to press on the ones in my back/hips and NOT have excruciating pain. She then had me take my socks off for my feet examination. Her first note, as I was removing them, was the swelling. Then as she pressed the joints, I nearly teared. Same with my knees. "Well, this is not fibro that is bothering you, this time. Your RD is definitely in a flare." With that, we both decided a steroid shot would work wonders. She also is having me increase the amnitriptoline that I take from only on Friday/Saturday to a couple other times in the week, because I need to relax my body and get the fibro under control before it goes nutty.
That was the extent of my visit today.
I will post about my surgery last June next.
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