Through out my life, I have noticed that you truly learn who your friends are when you are in crisis. The first time I experienced this since being a mom was when our oldest son suddenly became incredibly ill during our younger son’s birthday party in June 2005. Our oldest son has asthma and yet it was clear that what seemed like a mild cold the day before was suddenly much, much more. It was a Saturday, but his pediatrician was on-call. After speaking to his pediatrician twice and reporting his increasing temperature, he got irritated with me and said that if I was that concerned, I should take him to the ER. So in the middle of the birthday party, Mom and I took my oldest to the ER and immediately was he admitted with pneumonia. When we called Michael and told him what was wrong, I then spoke to a couple of adult female friends who were at the party and asked him to pack some things so I could sleep with him at the hospital. After the party was over, Michael brought the packed items and then went home with our youngest son while I stayed at the hospital. The next evening, I came home so that my husband could take a turn at the hospital while I returned calls and got some much-needed sleep. One of the calls was to my best friend who was also the godmother to both boys. I was exhausted so the conversation was short, but I told her how he was doing and I thanked her for helping pack things for me and also helping to pick up the house after the party. We made plans to talk again the next day. I left messages over the course of several weeks and even spoke to her mother who she lived with her and asked if my friend was sick or mad at me. No, she wasn’t sick and her mother didn’t know why my friend wasn’t returning my calls. To this day, we have not talked since. She hasn’t answered one email, one card, or one call. Recently my mom even called and left messages, one even with her mom, and still no return phone calls. Here I thought my best friend and the godmother to my sons would be there for me when one of my sons was desperately sick and instead she disappeared with no warning, no communication, no fight, nothing.
So when I was diagnosed with RSD, I was bracing myself for how people would react. My parents were upset because Mom knew exactly what RSD is and explained the diagnosis to my father. My brother was also upset and was also educated by my mother. They were taken aback that a woman who was always a tomboy and had bumped and bruised her way through life was suddenly a RSD patient. Yet despite everything, they have been by my side and have listened to all the highs and lows I have experienced throughout this journey.
But when it came to friends, word spread quickly among our school’s PTA that I was now ill. A dinner-delivery sign-up was put together by a PTA member and several dinners were indeed delivered to our home. Some women who barely even knew me signed up and indeed delivered some of these dinners to our home. Others who I knew better did not sign up and at the time I figured that they were too busy, didn’t want to cook, it was the holiday season or money was tight. I never took personally who didn’t sign up, but was incredibly grateful to those who didn’t even know me and yet brought these incredible meals.
So after the holidays were over and I continued to be symptomatic, it was amazing to see who called, who asked how I was and who even asked if there was something they could do. A couple of closer friends did all of these things initially and even suddenly dropped out of sight. Again, calls don’t get returned, emails are ignored and I don’t see them at all. It hurts me like crazy and I wonder if this is about the RSD or if this is just the way they are; they make friendships, dump them and then move on.
What has surprised me the most is that some of them were not what I would call “friends”; we didn’t have get-togethers beyond play dates and didn’t socialize outside school-related activities and yet I figured we had enough in common for them to at least check on me, ask if I was okay, or did I need anything. It was disappointing that they wouldn’t do the simplest acts of kindness.
However, what was surprising was how many people who I barely knew did indeed do these simple acts of kindness and, as a result, have become friends. It is not so much the act itself that makes it so special; it is the fact that they THINK to offer or THINK to call that makes this kindness extra special. It is nice when you don’t even have to ask because they offer instead.
Unfortunately it happens all to often that when someone is diagnosed with an illness, some people act is if it is “contagious” even if it isn’t the case. I’ve seen this happen to people who I have been literally at death’s door and I’ve seen this happen to people who have something that is permanent yet not fatal. Regardless of whether the person who does this is an acquaintance, a friend, a family member or a best friend, the pain caused by this “desertion” is indeed devastating. I wish people who have behaved this way recognize that indeed they could have done more for their friend in need and I also hope that this never happens to them. People need to learn that these acts of kindness not only help the person in need, but helps those who do the act learn more about themselves.
So to those who have been there by my side the entire time since my accident to now, thank you. To the friends that I am making now as a result of this blog, I understand how it feels if this has happened to you and you are not alone.
Thursday, July 29, 2010
Wednesday, July 28, 2010
Money Doesn't Grow on Trees
January 20th comes when I’m actually having a reasonable day pain-wise. I see Jeff first who continues to be the enthusiastic, positive and testosterone-filled man as before. He wants to check the alignment of both my pelvis and my hips and he wants to perform the laser treatment again. He and Elizabeth are both concerned that my pain is continuing and migrating with no STOP sign in sight. He is pleased that I rank my pain level today as a 4, but he also understands that there is no rhyme or reason why one day or moment my pain level is low and then the next day or moment it will be through the roof.
After I lay down, Jeff tells me that my pelvis is still misaligned and my range of motion at the pelvis is decreasing. The tone also continues to be abnormal and I tell him that I continue to have pain in that region. He notices that both legs now are very tender, particularly from the knee down and now the tone of my muscles in my lower extremities is abnormal. This is a huge step back from a month ago and we both know that if I continue to lose my muscle tone in my legs, it will become more and more difficult for me to walk. Once again my right hip is elevated despite wearing only tennis shoes that are at the same height as the Aircast. Jeff manipulates my right hip so that it is once again aligned with my left hip. Although the MRI on my back showed lumbar disc displacement, Jeff notices that I have thoracic disc displacement as well. Jeff repeats the laser treatment on my back only and once again the machine crackles and buzzes. Jeff tries it on himself to make sure that the machine is working correctly because it is making so much noise. Indeed the machine is working just fine because it is completely quiet on him, but when he puts the laser on my back again, the noise is incredibly loud. So despite my lower pain level, I am getting further and further behind the eight ball. Jeff thinks that I must embrace the spinal cord stimulator as my E-ticket to some real pain relief.
When I switch rooms to meet with Elizabeth, she too wants to discuss the spinal cord stimulator. When she first introduced the stimulator option to me, I was adamant that I wanted to try water therapy first. The problem is that none of the physical therapists in our area offer water therapy. I also had no idea the financial issues surrounding the therapy itself. I don’t know why, but I thought that because this was linked to an injury, I would be given a certain number of therapy sessions at little or no cost. I had no idea that the co-pay would be $20 each. That doesn’t sound like a lot of money until you realize that three sessions a week costs $60.00 for a monthly cost of $240.00. I have to be realistic about the financial burden my illness is now putting on my family. Not only am I not working, but I am literally spending money on something to do with my RSD every week. Since last July, I went from being the least medically treated person in our home to the most medically treated person in our home. I have had countless doctor appointments to attend, x-rays to endure, two MRIs to lie still for, and medications to be filled. All of this costs money, money, money and we do not have endless amounts of it to pay for all of these costs. Health insurance is wonderful, but those co-pays add up quite quickly.
I tell Elizabeth that all I can think to do is maybe try some water “therapy” of my own at the local athletic center and see if my insurance will pay part of my monthly membership. When our community pool opens in May, then I can continue the therapy literally in my own neighborhood from May to September, and then go back to the athletic center. It is the cheaper option and it gives me a chance to try water “therapy” before giving in to the stimulator. Elizabeth gives me two weeks to try to work something out before putting the stimulator front and center as the next step in treating my pain. In the meantime, I need to continue to take all my medications, including the newly prescribed Prozac. Again, if I am not properly taking my medication, my pain levels can’t be controlled.
Today I leave their office feeling like a child who has disappointed her parents, yet I can no longer ignore the financial burden my illness is now putting on my family. I’ve asked Elizabeth if I need to prepare myself for applying for permanent disability and she says that it is too early to say if we’ll cross that path. Michael says that obviously this money would help pay for all my medical expenses but that is not how this works. Last time I checked, money doesn’t grow on trees, it is illegal to rob a bank and I am not well enough to work. I know that both Jeff and Elizabeth are frustrated, but honestly, how do they think I feel?
After I lay down, Jeff tells me that my pelvis is still misaligned and my range of motion at the pelvis is decreasing. The tone also continues to be abnormal and I tell him that I continue to have pain in that region. He notices that both legs now are very tender, particularly from the knee down and now the tone of my muscles in my lower extremities is abnormal. This is a huge step back from a month ago and we both know that if I continue to lose my muscle tone in my legs, it will become more and more difficult for me to walk. Once again my right hip is elevated despite wearing only tennis shoes that are at the same height as the Aircast. Jeff manipulates my right hip so that it is once again aligned with my left hip. Although the MRI on my back showed lumbar disc displacement, Jeff notices that I have thoracic disc displacement as well. Jeff repeats the laser treatment on my back only and once again the machine crackles and buzzes. Jeff tries it on himself to make sure that the machine is working correctly because it is making so much noise. Indeed the machine is working just fine because it is completely quiet on him, but when he puts the laser on my back again, the noise is incredibly loud. So despite my lower pain level, I am getting further and further behind the eight ball. Jeff thinks that I must embrace the spinal cord stimulator as my E-ticket to some real pain relief.
When I switch rooms to meet with Elizabeth, she too wants to discuss the spinal cord stimulator. When she first introduced the stimulator option to me, I was adamant that I wanted to try water therapy first. The problem is that none of the physical therapists in our area offer water therapy. I also had no idea the financial issues surrounding the therapy itself. I don’t know why, but I thought that because this was linked to an injury, I would be given a certain number of therapy sessions at little or no cost. I had no idea that the co-pay would be $20 each. That doesn’t sound like a lot of money until you realize that three sessions a week costs $60.00 for a monthly cost of $240.00. I have to be realistic about the financial burden my illness is now putting on my family. Not only am I not working, but I am literally spending money on something to do with my RSD every week. Since last July, I went from being the least medically treated person in our home to the most medically treated person in our home. I have had countless doctor appointments to attend, x-rays to endure, two MRIs to lie still for, and medications to be filled. All of this costs money, money, money and we do not have endless amounts of it to pay for all of these costs. Health insurance is wonderful, but those co-pays add up quite quickly.
I tell Elizabeth that all I can think to do is maybe try some water “therapy” of my own at the local athletic center and see if my insurance will pay part of my monthly membership. When our community pool opens in May, then I can continue the therapy literally in my own neighborhood from May to September, and then go back to the athletic center. It is the cheaper option and it gives me a chance to try water “therapy” before giving in to the stimulator. Elizabeth gives me two weeks to try to work something out before putting the stimulator front and center as the next step in treating my pain. In the meantime, I need to continue to take all my medications, including the newly prescribed Prozac. Again, if I am not properly taking my medication, my pain levels can’t be controlled.
Today I leave their office feeling like a child who has disappointed her parents, yet I can no longer ignore the financial burden my illness is now putting on my family. I’ve asked Elizabeth if I need to prepare myself for applying for permanent disability and she says that it is too early to say if we’ll cross that path. Michael says that obviously this money would help pay for all my medical expenses but that is not how this works. Last time I checked, money doesn’t grow on trees, it is illegal to rob a bank and I am not well enough to work. I know that both Jeff and Elizabeth are frustrated, but honestly, how do they think I feel?
Tuesday, July 27, 2010
Websites and Ribbon
This is another one of those “short and sweet” blogs.
I have been seeing on a couple of RSD related sites that so many people do not understand the true definition of RSD, whether they are a patient or wondering if indeed they do have RSD. This confusion is heightened when a patient is seeing a doctor like a GP who is uneducated about the syndrome. For one of the best “definitions” of RSD that I have personally seen online, please visit http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome. If need be, print it for yourself, your doctor, your friends, your family……anyone and anybody who needs to know more about this condition. Some people honestly think this is about some mild discomfort…..what is the big deal? Well it isn’t about some mild discomfort AND it is a really big deal because it is entails so much more than “putting out the flames.”
Also, I am VERY EXCITED to see that indeed RSD has a ribbon! I believe that it was designed by Tracy West Glasgow. Some RSD patients have even had this ribbon tattooed on their body…..problem is that this can cause more RSD symptoms so I think I
will pass on doing this myself.
I have been seeing on a couple of RSD related sites that so many people do not understand the true definition of RSD, whether they are a patient or wondering if indeed they do have RSD. This confusion is heightened when a patient is seeing a doctor like a GP who is uneducated about the syndrome. For one of the best “definitions” of RSD that I have personally seen online, please visit http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome. If need be, print it for yourself, your doctor, your friends, your family……anyone and anybody who needs to know more about this condition. Some people honestly think this is about some mild discomfort…..what is the big deal? Well it isn’t about some mild discomfort AND it is a really big deal because it is entails so much more than “putting out the flames.”
Also, I am VERY EXCITED to see that indeed RSD has a ribbon! I believe that it was designed by Tracy West Glasgow. Some RSD patients have even had this ribbon tattooed on their body…..problem is that this can cause more RSD symptoms so I think I
will pass on doing this myself.
And, lastly, I have literally just learned about another RSD website called American RSDHope http://www.rsdhope.org/. I plan to learn more about this site and see if its an information site or if it offers more……stay tuned!
Monday, July 26, 2010
This Left Leg and Ankle Does Not Belong to Me
Mom and Dad have gone home now to California and the boys are back to school after enjoying immensely their winter break. I continue to have aching, burning, and pins and needles pain throughout my body. My shoulders are tight, my elbows and wrists ache and my hands keep falling asleep. The middle of my back burns and aches, my entire low back aches and is stiff and both hips continue to feel like firecrackers. My entire left leg, ankle and foot burn, ache and tingle. I obsessively continue to look at my bare left foot and ankle and compare it to my bare right foot and ankle. Have you ever had the feeling that a part of you no longer belongs to you, like a foreign limb has attached itself to your body to replace your limb that was once there? That’s how I continue to feel about my left leg and ankle. They no longer match my right foot and ankle in color or size. It looks like my ankle swallowed a golf ball and it appears my left foot is thinking I’m pregnant, all swollen like a muffin top. My toes on my left side are strangely positioned on my foot. Rather than lining up straight and together, my big toe has a big gap between it and the rest of the toes and half of the toe nail is changing in texture and is turning yellow. The next two toes are straight and almost on top of one another. The second toe’s nail is completely yellow, hard and crusty. My fourth and fifth toes look like they are spooning, tilting to the right. The pinky toe continues to keep its bruised look and the nail has not grown since the accident in July. The pinky continues to burn on all sides, at its base and in-between the fourth toe. I look at this foot and ankle and feel no connection to it other than pain. If it is possible to divorce yourself from a body part, that’s what I’ve done with this part of me. I care for it for the sake of the rest of me but do I love it? No.
I have read various early reports of RSD and how some doctors “treated” the syndrome. Some doctors amputated the affected area, thinking it was as simple as that, not realizing that the pain only continued and for many, it got only worse throughout other parts of the body. Some doctors amputated the affected area on the insistence of their patient and many times the same outcome occurred. It seems such a foreign concept to want to amputate a part of you, but now I can understand and accept the decision by looking at this foreign object that once was my left foot and ankle.
My new appointment for Elizabeth is set for January 20th and I know that the main topic of conversation will be my pain levels and the dorsal column stimulator. Unfortunately Elizabeth does not implant them herself, but she understands how they work and the potential benefits patients can receive from them. After discussing my case with some of the other doctors, they all concur with the decision. However there is also an insistence that I also have some extensive blood work done as well. If she didn’t order it, then it would be ordered by the surgeon anyway. I have no idea what labs she plans to order; obviously there are things that these doctors look for.
Before my parents left, we discussed this July accident and wonder if indeed there was another accident that could have gotten this RSD ball rolling. Two accidents stand out in our minds. The first is a hamstring accident that occurred in April 2005. Michael and I had literally just purchased a condo and on moving day, as normal course, I tend to clean as items are brought into the house. I was washing the kitchen floor before our refrigerator was delivered. As I moved on the wet floor, my left leg slipped on the floor and suddenly I was on the floor in the splits position. I heard several things pop and tear in my left leg when I went down and the pain was horrific. My boys came running and they called for Michael. Michael immediately wanted to lift me off the floor by pulling me up from under my arms, but I wouldn’t let him. I knew that if the pull was not complete, the injury would get worse. With a great deal of sheer will power and a large breath of air, I was able to move my left leg enough to no longer be doing the splits. When Michael then moved me, the popping and tearing was heard by all and, of course, I hollered from the pain. Michael moved me to a captain’s chair and gently guided my left leg up to another chair. Within five minutes, I realized that I would not be able to move from the chair. We made the decision to call an ambulance and at the hospital they told me that indeed I tore my hamstring plus other ligaments. Without any physical therapy other than swimming, the leg healed completely in one year.
Then in 2007, I hurt my left leg again while at the playground with the boys. It was after school and several of us moms decided to take our children to the “green park” nearby. By “green” I mean that the floor of the playground itself was made from recycled materials like tires. So I was standing and talking to a bunch of moms while our kids were playing when my oldest asked if I would push him on the swing. When I moved around, my left foot was at the concrete block that surrounded the playground and I literally fell over it. When I got up, I had a pretty nasty gash on the front of my left leg, just above my ankle. Although it was bleeding and burning, I’ve always been a tomboy and ignored the injury so I could push my oldest on the swing. When I got home less than two hours later, I thoroughly cleaned it and put a dressing on it. Within two days, however, I had to go to the doctor because it was hugely infected. When my internist saw it and asked me what in the world I did to myself, I told him this story. We both realized then the “green” floor of the playground contains latex and since I’m allergic to latex, I not only had an infected leg but I was also experiencing a latex reaction to the materials. After two weeks of antibiotics, follow-up doctor visits and showering with my left leg in a garbage bag, my leg healed, leaving a pale half-dollar sized scar.
So as I wait for my next appointment with Elizabeth, I know that I need to tell her these stories so that she understands that both leg injuries within the last several years have been to the left leg earlier. Is it possible that a torn hamstring or a stupid playground injury set the RSD ball into action?
I have read various early reports of RSD and how some doctors “treated” the syndrome. Some doctors amputated the affected area, thinking it was as simple as that, not realizing that the pain only continued and for many, it got only worse throughout other parts of the body. Some doctors amputated the affected area on the insistence of their patient and many times the same outcome occurred. It seems such a foreign concept to want to amputate a part of you, but now I can understand and accept the decision by looking at this foreign object that once was my left foot and ankle.
My new appointment for Elizabeth is set for January 20th and I know that the main topic of conversation will be my pain levels and the dorsal column stimulator. Unfortunately Elizabeth does not implant them herself, but she understands how they work and the potential benefits patients can receive from them. After discussing my case with some of the other doctors, they all concur with the decision. However there is also an insistence that I also have some extensive blood work done as well. If she didn’t order it, then it would be ordered by the surgeon anyway. I have no idea what labs she plans to order; obviously there are things that these doctors look for.
Before my parents left, we discussed this July accident and wonder if indeed there was another accident that could have gotten this RSD ball rolling. Two accidents stand out in our minds. The first is a hamstring accident that occurred in April 2005. Michael and I had literally just purchased a condo and on moving day, as normal course, I tend to clean as items are brought into the house. I was washing the kitchen floor before our refrigerator was delivered. As I moved on the wet floor, my left leg slipped on the floor and suddenly I was on the floor in the splits position. I heard several things pop and tear in my left leg when I went down and the pain was horrific. My boys came running and they called for Michael. Michael immediately wanted to lift me off the floor by pulling me up from under my arms, but I wouldn’t let him. I knew that if the pull was not complete, the injury would get worse. With a great deal of sheer will power and a large breath of air, I was able to move my left leg enough to no longer be doing the splits. When Michael then moved me, the popping and tearing was heard by all and, of course, I hollered from the pain. Michael moved me to a captain’s chair and gently guided my left leg up to another chair. Within five minutes, I realized that I would not be able to move from the chair. We made the decision to call an ambulance and at the hospital they told me that indeed I tore my hamstring plus other ligaments. Without any physical therapy other than swimming, the leg healed completely in one year.
Then in 2007, I hurt my left leg again while at the playground with the boys. It was after school and several of us moms decided to take our children to the “green park” nearby. By “green” I mean that the floor of the playground itself was made from recycled materials like tires. So I was standing and talking to a bunch of moms while our kids were playing when my oldest asked if I would push him on the swing. When I moved around, my left foot was at the concrete block that surrounded the playground and I literally fell over it. When I got up, I had a pretty nasty gash on the front of my left leg, just above my ankle. Although it was bleeding and burning, I’ve always been a tomboy and ignored the injury so I could push my oldest on the swing. When I got home less than two hours later, I thoroughly cleaned it and put a dressing on it. Within two days, however, I had to go to the doctor because it was hugely infected. When my internist saw it and asked me what in the world I did to myself, I told him this story. We both realized then the “green” floor of the playground contains latex and since I’m allergic to latex, I not only had an infected leg but I was also experiencing a latex reaction to the materials. After two weeks of antibiotics, follow-up doctor visits and showering with my left leg in a garbage bag, my leg healed, leaving a pale half-dollar sized scar.
So as I wait for my next appointment with Elizabeth, I know that I need to tell her these stories so that she understands that both leg injuries within the last several years have been to the left leg earlier. Is it possible that a torn hamstring or a stupid playground injury set the RSD ball into action?
Sunday, July 25, 2010
Some Calm after the Storm
Within 48 hours of the sympathetic block, the intense pain comes and goes and Mom gets her wish for snow. Mom and Dad stand at the front door, drinking in the glory of its beauty because it isn’t a bit of dusting; no, it is an actual snow that carpets the roof and ground and blankets the cars. Mom is thrilled and Dad is busily taking pictures as the boys dance around. No one cares that it is cold outside; it is the magic of it that captures all of our attention and heightens the excitement of Christmas.
Mom is surprised that Tiffany, Elizabeth’s assistant, did not call me to see how I was after the block and, frankly, so am I. I figure that their holiday work schedule has something to do with it and don’t take it personally.
What is obvious is that there is no magical relief from the sympathetic block. Yes, the pain from the block itself is gone, but my back pain from before the block is now at the same level. In other words, the sympathetic block is a failure.
I tell Michael and my parents that I am going to complete my medical directive and give a copy to Elizabeth, my internist, all of them and my brother Jon. Mom has already given me a medical alert bracelet which lists my allergies and asthma on the front side and then RSD and my name on the back side. Michael and I know that we need to update our will as well. Texas will not accept our will signed in California.
There is no doubt that having my parents at our home relieves a lot of the stress. Despite their own health issues, they are four extra hands, four extra legs and two extra mouths that help get things done. I call Elizabeth’s office after the holiday and tell Tiffany what happened. Again, she is disappointed and plans for another block are cancelled. The pain is to go forward with the dorsal column stimulator, but Elizabeth wants to see me beforehand. Mom knows that I have been hesitant about the stimulator, but she has used one before and for several years it gave her a lot of relief. Mom is sure that I will benefit from it greatly. I tell Tiffany that I will make an appointment to see Elizabeth after my parents leave in January.
A few days later, there is more snow and this time the boys can play in it and build miniature snowmen. Mom is elated that her wish came true and Dad takes more pictures. Despite all the beauty of it, I am forced to stay inside for fear I might slide and fall. I am thankful that we live in an area that gets little to no snow; what would my life be if I lived in New York like my brother? When Michael received word from his work that he would be transferred out of California, we were originally told we would be moving to Denver. We were really excited because we were in Colorado for about two weeks when my brother lot married two years earlier and Michael had been there a couple of times since. We really loved it, particularly Boulder and the surrounding areas. Two days later we were told by corporate “Sorry, we didn’t mean to say Denver; you are moving to Dallas.” Although it took us some time to get over the shock and switch gears on looking for housing and looking at school districts, in the end it was obviously the right decision. Despite all that is going on with my body, I believe that there is a reason for everything, even if I don’t understand or know what that reason might be. Where would I be if I was diagnosed in Colorado with RSD instead of Texas…..would I have been diagnosed at all? Would I end up with a terrible doctor? How would I get around in the snow? Regardless of what your religious faith might be, I believe that there is a higher “being/force/God” and my health has to be part of the reason why we moved to Texas instead of Colorado. I wonder what other mysteries of this RSD syndrome will develop over time and if I will ever receive any answers as to why I am where I am today.
Mom is surprised that Tiffany, Elizabeth’s assistant, did not call me to see how I was after the block and, frankly, so am I. I figure that their holiday work schedule has something to do with it and don’t take it personally.
What is obvious is that there is no magical relief from the sympathetic block. Yes, the pain from the block itself is gone, but my back pain from before the block is now at the same level. In other words, the sympathetic block is a failure.
I tell Michael and my parents that I am going to complete my medical directive and give a copy to Elizabeth, my internist, all of them and my brother Jon. Mom has already given me a medical alert bracelet which lists my allergies and asthma on the front side and then RSD and my name on the back side. Michael and I know that we need to update our will as well. Texas will not accept our will signed in California.
There is no doubt that having my parents at our home relieves a lot of the stress. Despite their own health issues, they are four extra hands, four extra legs and two extra mouths that help get things done. I call Elizabeth’s office after the holiday and tell Tiffany what happened. Again, she is disappointed and plans for another block are cancelled. The pain is to go forward with the dorsal column stimulator, but Elizabeth wants to see me beforehand. Mom knows that I have been hesitant about the stimulator, but she has used one before and for several years it gave her a lot of relief. Mom is sure that I will benefit from it greatly. I tell Tiffany that I will make an appointment to see Elizabeth after my parents leave in January.
A few days later, there is more snow and this time the boys can play in it and build miniature snowmen. Mom is elated that her wish came true and Dad takes more pictures. Despite all the beauty of it, I am forced to stay inside for fear I might slide and fall. I am thankful that we live in an area that gets little to no snow; what would my life be if I lived in New York like my brother? When Michael received word from his work that he would be transferred out of California, we were originally told we would be moving to Denver. We were really excited because we were in Colorado for about two weeks when my brother lot married two years earlier and Michael had been there a couple of times since. We really loved it, particularly Boulder and the surrounding areas. Two days later we were told by corporate “Sorry, we didn’t mean to say Denver; you are moving to Dallas.” Although it took us some time to get over the shock and switch gears on looking for housing and looking at school districts, in the end it was obviously the right decision. Despite all that is going on with my body, I believe that there is a reason for everything, even if I don’t understand or know what that reason might be. Where would I be if I was diagnosed in Colorado with RSD instead of Texas…..would I have been diagnosed at all? Would I end up with a terrible doctor? How would I get around in the snow? Regardless of what your religious faith might be, I believe that there is a higher “being/force/God” and my health has to be part of the reason why we moved to Texas instead of Colorado. I wonder what other mysteries of this RSD syndrome will develop over time and if I will ever receive any answers as to why I am where I am today.
Saturday, July 24, 2010
December 22 - The Bloody Hell Day
The day starts off pleasantly; no rain but a nice crisp in the air. Dinner plans are set for my uncle’s family to drive from Arlington to our neighborhood Chili’s. This is the first time all of us will be together since my cousin Tim got married, so it will be a mini-family reunion of sorts. Mom is coming with me to meet Elizabeth and today I am also seeing Jeff, who is a chiropractor. Mom is hoping that it will snow during the holidays; although she is in her late 60’s, she has never SEEN it snow.
Mom is anxious to meet Elizabeth, not only as my Mom but as a woman who suffers terribly from PsA (Psoriatic Arthritis) and has changed doctors after losing trust and faith with previous doctors who blamed her for her deteriorating back. I am anxious too because I want Mom to like Elizabeth as much as I do.
Once we arrive, Mom sits in the waiting room while I first see Jeff. Jeff is most likely in his early thirties, good-looking and very athletic. His assistant Jodi is very nice but a bit quiet compared to Jeff’s big personality. Jeff tells me he has read Elizabeth’s clinical notes and needs to know what my pain level is today. I tell him I’m about a “6” and that the pain in my left foot and ankle ranges from sharp, aching, burning, throbbing and tight. A couple of days ago a friend stepped on my foot and even with the Aircast on, the pain was intense immediately and I am still “recovering” from it.
Jeff is not surprised that my pain is a constant 24/7 and is getting worse. The simple act of walking continues to exacerbate the symptoms and so throughout the day I continue to stop my activity to rest and elevate at least my left leg. Jeff asks me if I have ever belonged to a gym and, if so, what kind of exercises did I enjoy doing. I tell him that I enjoyed rowing the most, which surprises him a lot because it takes a lot of strength to row. I told him sometimes I would row for up to one hour. I also liked the elliptical and occasionally I would walk on a treadmill or cycle, although whenever I cycled, my butt and my feet would always fall asleep. I can tell that he is surprised by this and tell him that my hope is to soon be in a pool and try to swim. He thinks this is an excellent idea since swimming is the best form of exercise for many RSD patients.
Jeff asks me to lie down and he tells me that one of his main concerns is that I maintain my muscle mass, particularly in my legs. Although I am far from petite, he acknowledges that I have a great deal of muscle mass throughout my body and if I lose that, my symptoms will only get worse and doing even the simple tasks will become exhausting. In additional to my abnormal gait, which has been abnormal since the accident, my pelvis is misaligned. As Jeff moves my legs one at a time in the air and feels my pelvis, he tells me that I have a decreased range of motion in my pelvis, the tone of my pelvic muscles are abnormal and the entire area is tender. My leg muscles are already losing their tone and my hip is elevated on the right side. As if it isn’t bad enough that I can only wear one shoe, now I need to make sure that I wear one that is of similar height as the Aircast, otherwise my pelvis and hips will continue to go out of alignment. Jeff tells me he needs to put my pelvis and hip back into alignment and I agree although I have no idea what that means. He talks me through it as he asks me to lay this way and that way and cross my arms. Once he is done, I notice some hip pain relief on my right side immediately and when he checks the length of my legs against each other, he tells me that my hips are now aligned. He gives me a hand to sit up and then tells me about the Type IV Laser Therapy. It is literally what you think; it is a laser that, when placed at areas of suspected RSD “affected” areas, the tool will emit a loud static-like noise. He says that it is a good tool to tell doctors were these RSD “affected” areas are and by using laser therapy on them, it can provide some relief to the patients. For some, it is temporary relief; for others it can provide dramatic improvements. Since this is a non-invasive option, I am eager to try it. First Jeff uses it on my naked left foot and ankle and the crackling it makes is unbelievable. I don’t feel anything, but the crackling alone is obvious to both of us that indeed this is an “affected” area. Next he runs the therapy on my back, especially along my shoulder blades and down the center of my back. Again, Jeff is very surprised how much crackling the laser machine indicates and understands why my back hurts so much. Although I am pleased about the acknowledgment, it shocks me that my pain/RSD has migrated so quickly and aggressively. Jeff hopes to continue the therapy for the next 4-5 weeks and would like to see me just after Christmas.
I go into the hallway and open the door leading to the waiting room. I tell Mom that I am done with Jeff and ready to see Elizabeth. She stops reading the book that is her latest obsession and gets up to follow me to Elizabeth’s exam room. I briefly tell her what Jeff and I discussed and what he did and she tells me that none of this surprises her. When Elizabeth comes in, she is warm as usual and is pleased to meet Mom.
Elizabeth asks me how I am doing with the medications and I tell her that I am doing fine but my pain level continues to go up. She is adamant that I am not taking enough Neurontin. I tell her that I don’t want to be loopy around the boys and that I have responsibilities with them which includes driving. She tells me that the Neurontin will not make me loopy and that’s why she prescribed it the way she did. She tells me that if I don’t take enough medication, how can the pain be controlled? I begin to cry and my Mom tells me that she agrees with Elizabeth. Once I begin crying, I notice that I can’t stop and all my frustrations come out: how can I clean my house when I can’t afford a cleaning lady and my husband works full time; how can I be an active volunteer at the boy’s school if I can’t keep some of my commitments due to the pain; how can I go to physical therapy when I can’t afford it and the type of therapy is not available in my area; how can I function fully as a Mom to the boys when Michael travels at times and works overtime and I take all these medications; how can I control the panic situations in public that I have never experienced before in my life; how can I rely on people to help me when some people seem to come from nowhere and help and others I expect to be there just vanish……I go on and on and on. Mom holds one hand and Elizabeth holds the other as I continue to sob and blubber and then apologize for blubbering. Both Mom and Elizabeth tell me that I need to let this stress out and Elizabeth says that she can’t help me fully if she doesn’t understand or know what is going on outside of her exam room. Elizabeth is indeed worried about how quickly and aggressively the RSD is spreading and she is concerned that the time between the onset of my initial RSD symptoms and treatment goes back before my accident. She is still hoping that I will receive some benefit from the stimulator and will refer me to the doctor who performs the procedure.
As I pull myself together, she and Mom look at my feet that are bare from my exam with Jeff. Elizabeth sees that my toenails on my left foot are continuing to harden and turn yellow. Both feet today are dry and my skin is very scaly. She tells me that because I continue to have the back pain, particularly in my low back where the MRI shows mild degeneration, that she wants to perform a Fluoroscopically Guided Lumbar Sympathetic Ganglion Block at Left L4. Mom winces and tells me that I will not like it, but she knows that sometimes after the initial 24-48 hours post block, some patients have incredible pain relief. She tells me, however, that my pain will get worse before it gets better and that there is no way that I’m going to be able to go out to dinner tonight. Mom stays with me as the block is performed in the next room and after it’s over, Mom helps me get ready to leave. We don’t stay for me to make a return appointment; Mom’s main objective is to get me home right away before the pain increases.
On the drive home, Mom is adamant that I must phone Tim’s wife and tell her what happened and that I won’t be able to keep the dinner date. I am equally adamant that everyone else go without me, but Mom tells me that she will not leave me home alone after this procedure. When I get home, Mom and I tell Dad what happened and he agrees that if I can’t go, they all don’t go. After taking my Neurontin, I make the call and extend my apologies.
I change out of my clothes and into my pajamas. As the day slowly ticks by, my pain level increases quickly. Mom sets me up on my loveseat and with the heating pad and my body pillow. She grabs a blanket and puts it over me and then tells the boys that if they need anything, they must ask anyone but me. I call Michael and tell him what happened and that the dinner plans are cancelled. When he comes home, he can see that I’m in a lot of pain. For the first time in my “RSD life,” I am completely unable to escape from the pain. I moan and fidget from all the low back cramping which is worse than the low back labor pain I had with both boys. I continue to take more and more medication and I am barely able to eat. The pain makes me nauseous and it travels down the front and back of both legs to my feet. As I get up to go to the bathroom or just to give my legs some circulation, I am walking hunched over like an old lady. If I ever thought a car, bus or train ran me over before, words could not describe this level of pain; it was literally off the charts.
Eventually I did fall asleep on the loveseat. Mom told me the next day that I was whimpering, moaning and crying in my sleep. I knew it was true because at one point I woke up and tears were flowing from my eyes and formed a puddle on my pillow. By far it was one of the worse nights of my life.
The next morning, there are several things Mom, Dad and I agree on: there is no denying that I have RSD; there is no denying that I have had RSD longer than we realized; there is no doubt that I need to take more pain medication; there is no doubt that Michael and the boys will need to do more house chores and over my dead body will I ever have another sympathetic block again.
Mom is anxious to meet Elizabeth, not only as my Mom but as a woman who suffers terribly from PsA (Psoriatic Arthritis) and has changed doctors after losing trust and faith with previous doctors who blamed her for her deteriorating back. I am anxious too because I want Mom to like Elizabeth as much as I do.
Once we arrive, Mom sits in the waiting room while I first see Jeff. Jeff is most likely in his early thirties, good-looking and very athletic. His assistant Jodi is very nice but a bit quiet compared to Jeff’s big personality. Jeff tells me he has read Elizabeth’s clinical notes and needs to know what my pain level is today. I tell him I’m about a “6” and that the pain in my left foot and ankle ranges from sharp, aching, burning, throbbing and tight. A couple of days ago a friend stepped on my foot and even with the Aircast on, the pain was intense immediately and I am still “recovering” from it.
Jeff is not surprised that my pain is a constant 24/7 and is getting worse. The simple act of walking continues to exacerbate the symptoms and so throughout the day I continue to stop my activity to rest and elevate at least my left leg. Jeff asks me if I have ever belonged to a gym and, if so, what kind of exercises did I enjoy doing. I tell him that I enjoyed rowing the most, which surprises him a lot because it takes a lot of strength to row. I told him sometimes I would row for up to one hour. I also liked the elliptical and occasionally I would walk on a treadmill or cycle, although whenever I cycled, my butt and my feet would always fall asleep. I can tell that he is surprised by this and tell him that my hope is to soon be in a pool and try to swim. He thinks this is an excellent idea since swimming is the best form of exercise for many RSD patients.
Jeff asks me to lie down and he tells me that one of his main concerns is that I maintain my muscle mass, particularly in my legs. Although I am far from petite, he acknowledges that I have a great deal of muscle mass throughout my body and if I lose that, my symptoms will only get worse and doing even the simple tasks will become exhausting. In additional to my abnormal gait, which has been abnormal since the accident, my pelvis is misaligned. As Jeff moves my legs one at a time in the air and feels my pelvis, he tells me that I have a decreased range of motion in my pelvis, the tone of my pelvic muscles are abnormal and the entire area is tender. My leg muscles are already losing their tone and my hip is elevated on the right side. As if it isn’t bad enough that I can only wear one shoe, now I need to make sure that I wear one that is of similar height as the Aircast, otherwise my pelvis and hips will continue to go out of alignment. Jeff tells me he needs to put my pelvis and hip back into alignment and I agree although I have no idea what that means. He talks me through it as he asks me to lay this way and that way and cross my arms. Once he is done, I notice some hip pain relief on my right side immediately and when he checks the length of my legs against each other, he tells me that my hips are now aligned. He gives me a hand to sit up and then tells me about the Type IV Laser Therapy. It is literally what you think; it is a laser that, when placed at areas of suspected RSD “affected” areas, the tool will emit a loud static-like noise. He says that it is a good tool to tell doctors were these RSD “affected” areas are and by using laser therapy on them, it can provide some relief to the patients. For some, it is temporary relief; for others it can provide dramatic improvements. Since this is a non-invasive option, I am eager to try it. First Jeff uses it on my naked left foot and ankle and the crackling it makes is unbelievable. I don’t feel anything, but the crackling alone is obvious to both of us that indeed this is an “affected” area. Next he runs the therapy on my back, especially along my shoulder blades and down the center of my back. Again, Jeff is very surprised how much crackling the laser machine indicates and understands why my back hurts so much. Although I am pleased about the acknowledgment, it shocks me that my pain/RSD has migrated so quickly and aggressively. Jeff hopes to continue the therapy for the next 4-5 weeks and would like to see me just after Christmas.
I go into the hallway and open the door leading to the waiting room. I tell Mom that I am done with Jeff and ready to see Elizabeth. She stops reading the book that is her latest obsession and gets up to follow me to Elizabeth’s exam room. I briefly tell her what Jeff and I discussed and what he did and she tells me that none of this surprises her. When Elizabeth comes in, she is warm as usual and is pleased to meet Mom.
Elizabeth asks me how I am doing with the medications and I tell her that I am doing fine but my pain level continues to go up. She is adamant that I am not taking enough Neurontin. I tell her that I don’t want to be loopy around the boys and that I have responsibilities with them which includes driving. She tells me that the Neurontin will not make me loopy and that’s why she prescribed it the way she did. She tells me that if I don’t take enough medication, how can the pain be controlled? I begin to cry and my Mom tells me that she agrees with Elizabeth. Once I begin crying, I notice that I can’t stop and all my frustrations come out: how can I clean my house when I can’t afford a cleaning lady and my husband works full time; how can I be an active volunteer at the boy’s school if I can’t keep some of my commitments due to the pain; how can I go to physical therapy when I can’t afford it and the type of therapy is not available in my area; how can I function fully as a Mom to the boys when Michael travels at times and works overtime and I take all these medications; how can I control the panic situations in public that I have never experienced before in my life; how can I rely on people to help me when some people seem to come from nowhere and help and others I expect to be there just vanish……I go on and on and on. Mom holds one hand and Elizabeth holds the other as I continue to sob and blubber and then apologize for blubbering. Both Mom and Elizabeth tell me that I need to let this stress out and Elizabeth says that she can’t help me fully if she doesn’t understand or know what is going on outside of her exam room. Elizabeth is indeed worried about how quickly and aggressively the RSD is spreading and she is concerned that the time between the onset of my initial RSD symptoms and treatment goes back before my accident. She is still hoping that I will receive some benefit from the stimulator and will refer me to the doctor who performs the procedure.
As I pull myself together, she and Mom look at my feet that are bare from my exam with Jeff. Elizabeth sees that my toenails on my left foot are continuing to harden and turn yellow. Both feet today are dry and my skin is very scaly. She tells me that because I continue to have the back pain, particularly in my low back where the MRI shows mild degeneration, that she wants to perform a Fluoroscopically Guided Lumbar Sympathetic Ganglion Block at Left L4. Mom winces and tells me that I will not like it, but she knows that sometimes after the initial 24-48 hours post block, some patients have incredible pain relief. She tells me, however, that my pain will get worse before it gets better and that there is no way that I’m going to be able to go out to dinner tonight. Mom stays with me as the block is performed in the next room and after it’s over, Mom helps me get ready to leave. We don’t stay for me to make a return appointment; Mom’s main objective is to get me home right away before the pain increases.
On the drive home, Mom is adamant that I must phone Tim’s wife and tell her what happened and that I won’t be able to keep the dinner date. I am equally adamant that everyone else go without me, but Mom tells me that she will not leave me home alone after this procedure. When I get home, Mom and I tell Dad what happened and he agrees that if I can’t go, they all don’t go. After taking my Neurontin, I make the call and extend my apologies.
I change out of my clothes and into my pajamas. As the day slowly ticks by, my pain level increases quickly. Mom sets me up on my loveseat and with the heating pad and my body pillow. She grabs a blanket and puts it over me and then tells the boys that if they need anything, they must ask anyone but me. I call Michael and tell him what happened and that the dinner plans are cancelled. When he comes home, he can see that I’m in a lot of pain. For the first time in my “RSD life,” I am completely unable to escape from the pain. I moan and fidget from all the low back cramping which is worse than the low back labor pain I had with both boys. I continue to take more and more medication and I am barely able to eat. The pain makes me nauseous and it travels down the front and back of both legs to my feet. As I get up to go to the bathroom or just to give my legs some circulation, I am walking hunched over like an old lady. If I ever thought a car, bus or train ran me over before, words could not describe this level of pain; it was literally off the charts.
Eventually I did fall asleep on the loveseat. Mom told me the next day that I was whimpering, moaning and crying in my sleep. I knew it was true because at one point I woke up and tears were flowing from my eyes and formed a puddle on my pillow. By far it was one of the worse nights of my life.
The next morning, there are several things Mom, Dad and I agree on: there is no denying that I have RSD; there is no denying that I have had RSD longer than we realized; there is no doubt that I need to take more pain medication; there is no doubt that Michael and the boys will need to do more house chores and over my dead body will I ever have another sympathetic block again.
Friday, July 23, 2010
Way Too Much
This will be a quick blog tonight since I am completely exhausted tonight. Today I went out to purchase school supplies for my boys and did some grocery shopping. The boys went along and were actually helpful, but it still doesn’t change the fact that I went to three stores today and that is WAY TOO MUCH for me to do in one day. I still have not fully accepted that what I want to accomplish is not always a reasonable expectation, especially when it involves a lot of walking. So I will blog again tomorrow and it will be about one of the pivotal appointments I had with Elizabeth.
Also I want to say “thank you” to those who commented about yesterday’s blog. Honestly, I can’t say enough that if you don’t have the right doctor managing your RSD or any other auto-immune disorder, you are screwed. Don’t hesitate to change doctors if you feel that you are not receiving the care, respect and acknowledgment from your doctor. It is not your doctor’s feelings you need to worry about; you need to stand up for yourself and search for the doctor who is right for you. I was lucky and was referred to the right doctor for me once I was diagnosed. I know that for many, many people, this is not always the case.
Also I want to say “thank you” to those who commented about yesterday’s blog. Honestly, I can’t say enough that if you don’t have the right doctor managing your RSD or any other auto-immune disorder, you are screwed. Don’t hesitate to change doctors if you feel that you are not receiving the care, respect and acknowledgment from your doctor. It is not your doctor’s feelings you need to worry about; you need to stand up for yourself and search for the doctor who is right for you. I was lucky and was referred to the right doctor for me once I was diagnosed. I know that for many, many people, this is not always the case.
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