I went to see Dr. McAfee in Baltimore this past Thursday for my one year follow-up. It was actually a 15 month follow-up, but that was because he was traveling the world and I was dealing with a tough work schedule.
The visit was quick, but I walked out with x-rays and my records in hand. The L5/S1 area fused perfectly, no worries there. He feels that my recent pain is probably due to a partially bulging disc at L4/L5. I was thinking the same thing; yes, I'm a pro at diagnosing myself and I know what a bulging disc feels like. This one is out towards the right as I'm having pain in my right leg only, so at least I have that going for me. No surgery needed at this time. A cortisone injection and physical therapy was recommended. I plan on doing the first one and acupuncture; I'm skipping the PT as I've never had luck with it in the past and always end up worse off.
The other positive thing was that I got his blessing on something I've been holding off discussing over the last couple of weeks. In early February I posted a letter that I wrote to Rush University regarding the metal reaction testing they had developed. Well, to my complete surprise, late on a Friday night I received a response from the head physician who has written a lot of articles on the topic of metal/implant reactions. It was so kind that it completely made my year. He gave me his Facebook group page they had just started and asked if they could use part of my letter as a testimonial for their web site. The big news - he requested my permission to use my story as a case study, since it is the first known example of an artificial disc causing an autoimmune reaction. In the past the other case studies have been on hip & knee implants, but not spine implants. After talking with Dr. McAfee and getting his blessing (I wasn't about to tick off the person who helped save my life), I agreed to the case study.
Contrary to what some may think, I doubt this is going to put me on a course to fame. I will be nothing more than a "Jane Doe" or "Patient #1", I'm sure. But this is a very important case study that will likely be highlighted to spine surgeons all over the world. And you know what, that makes me happier than I could ever describe. Even Dr. McAfee, the person who knew it made sense to remove the disc, doesn't understand the difference between someone not being able to wear jewelry and the reaction a body can have to an implant. This is so important, especially in a world where people are getting older and more implants are being created every day to treat the ailments of the baby boomers & beyond. Studies are showing that you can be just like me and have no allergies to metals on the outside of your body, but then you add an implant and your chances of having a metal reaction DOUBLE. Because most physicians have no clue about this cause/effect relationship, people are being misdiagnosed with things like fibromyalgia. I know of two people out there who were in that position and finally got the metal testing & it came back positive. But because they are not in the U.S. (one is in Canada & the other in Europe), they can't have the disc removed because their government paid health care won't cover it. It's expensive, not to mention a life threatening surgery that very few people could/should do. I read of stories of others with the artificial disc suffering with similar ailments, and this is not a trend that is going to stop any time soon. So to me, getting a case study out there from a reputable physician who is known world-wide for his research on the topic can only be a good thing.
So that is what is going on with me. 15 months later I'm still dealing with pain issues, but it could still be so much worse. I don't think this will be my last post, but the posts will continue to be sporadic just as they have been. I'll post updates on how the injection/acupuncture works out, and hopefully my final entry will be a copy of the case study along with a picture of a happy, healthy, 80% pain-free me.
Tuesday, March 16, 2010
Monday, February 15, 2010
Quick Update
I went to the primary care office on Friday where I was given some prescriptions to help with pain & sleep. Nothing big or serious, but just something to help take inflammation down and to also help take the sharpness of the pain and make it less horrible when I'm trying to sleep. So far I actually had a good night's sleep on Friday & Sunday night, but Saturday was up most of the night again.
My doctor has no clue what is causing this recent flair-up, but since I only have to wait a month before I'm back in Baltimore she just did what she could to get me though until then. She tried to give me nerve medication and anti-depressants for pain/sleep, but as always I refused. If it ever gets to that point I think I'd rather throw myself in front of a bus. (For those who don't know this, I actually use the "In case I get hit by a bus..." saying, so I do mean this as a joke!)
I wish I could say I feel better today but I don't. All I can do is get through each day, do as much as I can, make sure I rest as much as I can and before I know it I'm sure my Baltimore visit will be here.
My doctor has no clue what is causing this recent flair-up, but since I only have to wait a month before I'm back in Baltimore she just did what she could to get me though until then. She tried to give me nerve medication and anti-depressants for pain/sleep, but as always I refused. If it ever gets to that point I think I'd rather throw myself in front of a bus. (For those who don't know this, I actually use the "In case I get hit by a bus..." saying, so I do mean this as a joke!)
I wish I could say I feel better today but I don't. All I can do is get through each day, do as much as I can, make sure I rest as much as I can and before I know it I'm sure my Baltimore visit will be here.
Monday, February 8, 2010
What is this?
I've been in denial for a few weeks, but the lower back pain is back. Severe, sharp back pain that is also causing me severe, sharp pain in the sciatica nerve in my right leg. It's now to the point where it's a Monday morning and I'm home, because if I were to drag myself into work all I would be able to think about is how much pain I'm in, how terrified I am and how exhausted I am from hardly sleeping the last three nights.
I don't know what is going on, and it will likely be several weeks before I do. I'm deeply concerned and caught off guard by the whole thing. I have an appointment with my Baltimore spine surgeon in March, so things will have to wait until then...unless I can't get things to calm down enough where I'm not suffering so much. Then I guess the game plan is to see if I can get an epidural injection, something I haven't had since 2007. It basically takes me out of commission a whole work day and has the potential to make me even worse, but I'm thinking that may be the only thing that can help short term.
I'm not sure what the next hours, days, weeks, etc. will bring, but at this point all I can do is pray that I'm not meant to go through another spine injury. What's meant to happen will happen, but this little setback has been pretty devastating to me physically and mentally. I've been hoping things would turn around but it's clear that's not going to happen so easily. I'll post updates here as I have them.
I don't know what is going on, and it will likely be several weeks before I do. I'm deeply concerned and caught off guard by the whole thing. I have an appointment with my Baltimore spine surgeon in March, so things will have to wait until then...unless I can't get things to calm down enough where I'm not suffering so much. Then I guess the game plan is to see if I can get an epidural injection, something I haven't had since 2007. It basically takes me out of commission a whole work day and has the potential to make me even worse, but I'm thinking that may be the only thing that can help short term.
I'm not sure what the next hours, days, weeks, etc. will bring, but at this point all I can do is pray that I'm not meant to go through another spine injury. What's meant to happen will happen, but this little setback has been pretty devastating to me physically and mentally. I've been hoping things would turn around but it's clear that's not going to happen so easily. I'll post updates here as I have them.
Friday, January 15, 2010
Letter to Rush University
Rush University has an orthopedic group that has created metal reaction testing, which is slowly becoming more important as the number of orthpedic implants continue to grow each year. I had testing done back in August/September of 2008, and from what I've heard on some of the spine message boards they have not gotten much response back from doctors/patients after the results are given. So I decided to take the time to write the Director of the group, who was the one initially contacted about my situation and decided I would share.
Why am I doing this? Well, not so much for my friends and family, but more for anyone who is researching ADR's and comes across my site. A popular spine message board I use to frequent is really promoting the artificial disc - in fact, the head guy just put out a video about it showing several people making the decision to have the surgery, and then showing how great it was for them. This obviously goes against my own experience (and the experience of many others), and I feel there is a responsibility to show both sides. So in an effort to continue to log my story until I find a better way to share information, I decided to post the letter here.
January 15, 2010
My name is Carrie Fairfield, and in August 2008 I had blood work sent to your facility for metal reaction testing. I had received a Charite artificial disc at L5/S1 in May 2005, and though it had initially been successful I had been suffering for over three years with unexplained pain and blood abnormalities that had yet to be diagnosed. After consulting with my spine surgeon, Dr. Scot Miller at Crystal Clinic in Akron – who had contacted Dr. Paul McAfee with Towson Orthopaedic Associates in Towson, Maryland – the recommendation was to have blood testing performed through Rush University utilizing the techniques you had developed.
I cannot begin to describe the difficult journey I had been on for over three years by the time I had the blood testing completed. I had been to over 15 surgeons and physicians, none of whom could explain why I was dealing with spine, joint and all-over-body pain, in addition to a high anti-nuclear antibody count and a very low platelet count, none of which I had experienced prior to the artificial disc replacement.
I was 28 years old when I had the artificial disc replacement (ADR) performed, and with the exception of disc degeneration at L5/S1 I was in perfect health. Before I had the ADR I had asked my surgeon if a metal reaction was possible and was told no. I asked every doctor that I met for three years the same question, and it was always no. Yet from my own research and medical articles and studies I had come across, I strongly felt that it was a possibility. I just needed to find someone who could test me. In the meantime I suffered constantly from severe pain, which greatly limited my life. I continued to worsen year after year, and went from an active individual to someone who could barely make it through a work day, only to come home and regenerate so I could do it all over the next day. I saw my future and feared it wouldn’t be long before I had to quit my job and lose the last part of a “normal” life; I had already lost everything else.
When I received the results from your medical group, it showed a high reaction to nickel, a component used in the artificial disc. I was also slightly reactive to two other metals used in the disc. Given the results I was referred to Dr. McAfee, who removed the artificial disc and replaced it with a fusion in December 2008. Prior to that surgery, my platelet count was down to 16,000.
While the disc had been removed, due to the high risk of the surgery surgeons had put in an IVC filter, made of nickel, prior to the surgery. This was kept in until February 2009 before it was removed. My platelet count at the time of the procedure was 9,000.
In April 2009 I started feeling slightly improved in regards to the joint and all-over body pain. I had my platelet count tested, and it came back at 23,000. In July 2009 I had my count tested again, and for the first time since before the ADR it was at a normal level – 190,000. My local physician was shocked at the unexpected increase and had them rerun the test; the count came back at 191,000.
As of October 2009, after being nickel and metal free for eight months, my platelet count is 331,000. My ANA count is still high, but it seems to be a non-issue. While I am still experiencing pain in my joints, it is not severe as it was for the three years prior. The all-over body pain is gone. The overall pain levels are greatly reduced, and slowly I am getting my life back at the age of 33.
If I had not had your testing available to me, I don’t know where I would be right now. In my eyes, you saved my life. You gave me answers when no one else could, and those answers allowed surgeons to take action and remove the artificial disc, which I believe was the cause of my issues. Even physicians who were very skeptical of metal reactions have seen my progress and are now starting to admit that maybe there is something to it after all.
For over three years I was on a very solitary road as a patient. I cannot begin to thank you and your team for the service you are providing. In a time where implants are becoming more common, I believe that this is an area that must be explored more. Patients need to be educated on potential metal reactions; even though they might not be commonplace, I believe they do exist. So many physicians out there, including those at large organizations such as The Cleveland Clinic, have turned a blind eye to this information. This puts a burden on the patient to try to get information on this topic, and I will say from experience it is not easy or readily available.
I hope you do not mind, but I have shared my journey and information on the testing you provide on several spine message boards. I am already aware of several individuals who have opted for the testing before getting the ADR, and one who tested with high reactivity to almost every component in the disc. Again, I feel you are providing a very valuable service and I want people to be aware it exists so they can take advantage of it if they feel it makes sense for them.
It was on one of these boards where I learned that you had not been receiving much feedback as to what happened once the testing was completed & the results were given to the patient, which is why I’m writing today. Without your testing, I would have likely had a fusion with the artificial disc being left in. No surgeon I had seen recommended removing it; I hate to think of the condition I would be in today had I allowed that to take place. Your testing allowed me to finally get the treatment I desperately needed, and for that I sincerely thank you. If there is ever anything I can do for you or your organization, I would be happy to return the favor.
Sincerely,
Carrie L. Fairfield
Why am I doing this? Well, not so much for my friends and family, but more for anyone who is researching ADR's and comes across my site. A popular spine message board I use to frequent is really promoting the artificial disc - in fact, the head guy just put out a video about it showing several people making the decision to have the surgery, and then showing how great it was for them. This obviously goes against my own experience (and the experience of many others), and I feel there is a responsibility to show both sides. So in an effort to continue to log my story until I find a better way to share information, I decided to post the letter here.
January 15, 2010
My name is Carrie Fairfield, and in August 2008 I had blood work sent to your facility for metal reaction testing. I had received a Charite artificial disc at L5/S1 in May 2005, and though it had initially been successful I had been suffering for over three years with unexplained pain and blood abnormalities that had yet to be diagnosed. After consulting with my spine surgeon, Dr. Scot Miller at Crystal Clinic in Akron – who had contacted Dr. Paul McAfee with Towson Orthopaedic Associates in Towson, Maryland – the recommendation was to have blood testing performed through Rush University utilizing the techniques you had developed.
I cannot begin to describe the difficult journey I had been on for over three years by the time I had the blood testing completed. I had been to over 15 surgeons and physicians, none of whom could explain why I was dealing with spine, joint and all-over-body pain, in addition to a high anti-nuclear antibody count and a very low platelet count, none of which I had experienced prior to the artificial disc replacement.
I was 28 years old when I had the artificial disc replacement (ADR) performed, and with the exception of disc degeneration at L5/S1 I was in perfect health. Before I had the ADR I had asked my surgeon if a metal reaction was possible and was told no. I asked every doctor that I met for three years the same question, and it was always no. Yet from my own research and medical articles and studies I had come across, I strongly felt that it was a possibility. I just needed to find someone who could test me. In the meantime I suffered constantly from severe pain, which greatly limited my life. I continued to worsen year after year, and went from an active individual to someone who could barely make it through a work day, only to come home and regenerate so I could do it all over the next day. I saw my future and feared it wouldn’t be long before I had to quit my job and lose the last part of a “normal” life; I had already lost everything else.
When I received the results from your medical group, it showed a high reaction to nickel, a component used in the artificial disc. I was also slightly reactive to two other metals used in the disc. Given the results I was referred to Dr. McAfee, who removed the artificial disc and replaced it with a fusion in December 2008. Prior to that surgery, my platelet count was down to 16,000.
While the disc had been removed, due to the high risk of the surgery surgeons had put in an IVC filter, made of nickel, prior to the surgery. This was kept in until February 2009 before it was removed. My platelet count at the time of the procedure was 9,000.
In April 2009 I started feeling slightly improved in regards to the joint and all-over body pain. I had my platelet count tested, and it came back at 23,000. In July 2009 I had my count tested again, and for the first time since before the ADR it was at a normal level – 190,000. My local physician was shocked at the unexpected increase and had them rerun the test; the count came back at 191,000.
As of October 2009, after being nickel and metal free for eight months, my platelet count is 331,000. My ANA count is still high, but it seems to be a non-issue. While I am still experiencing pain in my joints, it is not severe as it was for the three years prior. The all-over body pain is gone. The overall pain levels are greatly reduced, and slowly I am getting my life back at the age of 33.
If I had not had your testing available to me, I don’t know where I would be right now. In my eyes, you saved my life. You gave me answers when no one else could, and those answers allowed surgeons to take action and remove the artificial disc, which I believe was the cause of my issues. Even physicians who were very skeptical of metal reactions have seen my progress and are now starting to admit that maybe there is something to it after all.
For over three years I was on a very solitary road as a patient. I cannot begin to thank you and your team for the service you are providing. In a time where implants are becoming more common, I believe that this is an area that must be explored more. Patients need to be educated on potential metal reactions; even though they might not be commonplace, I believe they do exist. So many physicians out there, including those at large organizations such as The Cleveland Clinic, have turned a blind eye to this information. This puts a burden on the patient to try to get information on this topic, and I will say from experience it is not easy or readily available.
I hope you do not mind, but I have shared my journey and information on the testing you provide on several spine message boards. I am already aware of several individuals who have opted for the testing before getting the ADR, and one who tested with high reactivity to almost every component in the disc. Again, I feel you are providing a very valuable service and I want people to be aware it exists so they can take advantage of it if they feel it makes sense for them.
It was on one of these boards where I learned that you had not been receiving much feedback as to what happened once the testing was completed & the results were given to the patient, which is why I’m writing today. Without your testing, I would have likely had a fusion with the artificial disc being left in. No surgeon I had seen recommended removing it; I hate to think of the condition I would be in today had I allowed that to take place. Your testing allowed me to finally get the treatment I desperately needed, and for that I sincerely thank you. If there is ever anything I can do for you or your organization, I would be happy to return the favor.
Sincerely,
Carrie L. Fairfield
Monday, December 28, 2009
December 28, 2009
First, my one year follow-up appointment with my spine surgeon in Baltimore was moved to 2010, so no update there.
Today doesn't have much significance with my spine (and subsequent) issues, but two events did occur on this day. First, my Grandpa G. passed away four years ago today from leukemia. He was a pillar of strength and brought a great deal of joy into my life and countless others. I always felt like he had my back even though we were usually hundreds of miles apart. When he died I was experiencing initial symptoms of the disc failure and implant reaction, and since he told me several times he was worried about my back it really bothered me that he died before I had a resolution. If there is a heaven he is certainly in it, and I hope he can see the progress that has been made and that everything will be ok.
The other significance is that a year ago the husband & I were in a hotel room in a suburb of Baltimore. We had starting packing up and preparing for a trip home; the idea was that I would be cleared to travel and go back home the next day. That Sunday night Brad got a call about his mom, who had been admitted to the hospital. She was never able to return home, but did live until late March of this year. Given everything else Brad had on his shoulders this was a shock and a lot of weight to handle, but he did so with grace, composure and strength. I know it was unbelievably difficult for him to have his wife on the east coast unable to do much after a double-surgery while his mom was in an Iowa hospital. Timing was horrible, but you can do minimal to plan life events.
I was hoping to close out this blog in 2009, but will keep it open until the visit with the surgeon. I don't see day-to-day changes, but when I look at things month-to-month I notice little differences. We just finished eight days on a Midwest vacation in Springfield, Kansas City, Des Moines and Davenport, and to my amazement we did a lot of stuff with very little pain. The last couple of days my back started getting sore and I couldn't lug the luggage around like I did early on, but overall I was pleased with what I was able to accomplish. At times I get impatient and wonder why I'm not further along, but there is progress in the right direction and I'm grateful for that.
I hope everyone had a wonderful Christmas holiday and I wish you all a very happy and successful 2010.
Today doesn't have much significance with my spine (and subsequent) issues, but two events did occur on this day. First, my Grandpa G. passed away four years ago today from leukemia. He was a pillar of strength and brought a great deal of joy into my life and countless others. I always felt like he had my back even though we were usually hundreds of miles apart. When he died I was experiencing initial symptoms of the disc failure and implant reaction, and since he told me several times he was worried about my back it really bothered me that he died before I had a resolution. If there is a heaven he is certainly in it, and I hope he can see the progress that has been made and that everything will be ok.
The other significance is that a year ago the husband & I were in a hotel room in a suburb of Baltimore. We had starting packing up and preparing for a trip home; the idea was that I would be cleared to travel and go back home the next day. That Sunday night Brad got a call about his mom, who had been admitted to the hospital. She was never able to return home, but did live until late March of this year. Given everything else Brad had on his shoulders this was a shock and a lot of weight to handle, but he did so with grace, composure and strength. I know it was unbelievably difficult for him to have his wife on the east coast unable to do much after a double-surgery while his mom was in an Iowa hospital. Timing was horrible, but you can do minimal to plan life events.
I was hoping to close out this blog in 2009, but will keep it open until the visit with the surgeon. I don't see day-to-day changes, but when I look at things month-to-month I notice little differences. We just finished eight days on a Midwest vacation in Springfield, Kansas City, Des Moines and Davenport, and to my amazement we did a lot of stuff with very little pain. The last couple of days my back started getting sore and I couldn't lug the luggage around like I did early on, but overall I was pleased with what I was able to accomplish. At times I get impatient and wonder why I'm not further along, but there is progress in the right direction and I'm grateful for that.
I hope everyone had a wonderful Christmas holiday and I wish you all a very happy and successful 2010.
Friday, October 23, 2009
11 Months, 2 Days Post-Op
It's been awhile since I've posted an update, and since I know a few people still check back here I thought I would do so today. After I last posted I had my part-time team member out of the office unexpectedly for many weeks, plus with a business acquisition - my life has been work, work and more work.
I had an interesting email sent to me a few weeks ago. A girl about my age had read about what I had gone through with the implant reaction on one of the spine messages boards I frequent, and she was less than a month away from getting an artificial disc replacement. She took action, contacted the lab that did my blood work, and had the test done herself. Fourteen days later she received the results, and she - like me - had a very high reaction to nickel and a slight reaction to several other of the metals used in the artificial disc implant. Now opting for the fusion, she sent me an email thanking me for sharing my story and all of the contact information I had as it probably saved her a path similar to my own.
I'm not going to lie, as the last thing I wanted to do with my life was to be a guinea pig/test subject for others. However, I have always said that if something good could come from what I've been through then I could come to terms with it all and move forward. The email brought me a large sense of satisfaction knowing that a person was likely spared from the same path I was dragged down unwillingly. I'm able to now bring awareness to this issue so those who are contemplating the procedure can make as educated of a decision as possible given the complexity of this "simple" surgery.
So where do things stand with me? Well, my last platelet count a few weeks ago was 331,000, which is extremely healthy. My physician put it best when she said "Whatever auto-immune thing your body was going through appears to have resolved itself, or its in remission." Can you tell she is one of the skeptics when it comes to implant reactions? She is, but at least she still treats me like a person and is more open-minded than others I've come across. It's hard to believe that back in February my platelet count was 9,000. That is a huge jump, and the only difference is that now I am nickel-free. Physicians might doubt my pain levels, but blood work doesn't lie.
Pain-wise I'm definitely better off than I was a year ago, but I have a long ways to go. My body took a beating for over three years, I can't expect it to clear up overnight. At least now I'm starting to have 20-30 minute periods a few days a week where I feel close to perfect. No pain, nothing. It usually comes when I'm at work; I'd rather have it during my down time, but I won't complain! Tylenol arthritis has been a big friend of mine lately, as well as glucosamine even though it likes to shred my stomach. The big ingredient is shellfish, which I'm allergic to, but because I feel it helps with the joint pain I continue to take it.
I had been dealing with some unexplained foot pain for at least a year now, separate from what I dealt with before the surgery. I finally broke down and saw a podiatrist recently who confirmed that I have plantar fasciitis, which can often be caused by spine problems. I'm in a severe state, but it can luckily be treated with stretching - lots of stretching. It's something I'll likely deal with for the rest of my life, but already I'm noticing a difference by simply stretching several times throughout the day.
I go back to Baltimore for my one-year follow-up in December with my spine surgeon, so I'm hoping he's pleased with the results so far. It's hard to believe exactly one year ago tomorrow I was packing up and ready to head to Baltimore when I received the news from The Cleveland Clinic that my platelets were way too low (32,000) and they wouldn't approve me for surgery. It was one of the lowest days of my life, and the only time I've ever yelled at a doctor (though it was greatly deserved). What a difference a year makes.
Some days I feel like the progress isn't where I wanted it to be, but realistically I don't think I could be much better at this point. Day-to-day it's hard to see changes, but when I look at it month to month, or year to year, the changes become clearer. I am a long ways away from having the health I had prior to all of this mess back in May 2005, but I don't feel it's unobtainable. It will just take time.
With Thanksgiving coming up, it's a great time to reflect upon what you are thankful for. I am thankful for a husband who is my best friend and biggest supporter, and has helped me find strength even when I didn't think I had any left. I am thankful for parents who are always there for me, day or night. I am thankful for a brother who I know is always there, even when his schedule is ridiculous and we can rarely talk. I am thankful for my grandparents, aunts, uncles, and cousins who have provided a huge net of love and encouragement. I am thankful for the people I call my friends who provide me with an outlet to just be "normal", have fun, and enjoy life as much as possible. I definitely have a lot to be grateful for.
I'll try to post an update when I have my one-year follow-up. Depending on the outcome, I'm thinking I may close out this blog at the end of 2009 and go back to my regular one instead. I'd like 2010 to be a life that is not so impacted by "my failed ADR experiment." It feels like it's time to move on.
I had an interesting email sent to me a few weeks ago. A girl about my age had read about what I had gone through with the implant reaction on one of the spine messages boards I frequent, and she was less than a month away from getting an artificial disc replacement. She took action, contacted the lab that did my blood work, and had the test done herself. Fourteen days later she received the results, and she - like me - had a very high reaction to nickel and a slight reaction to several other of the metals used in the artificial disc implant. Now opting for the fusion, she sent me an email thanking me for sharing my story and all of the contact information I had as it probably saved her a path similar to my own.
I'm not going to lie, as the last thing I wanted to do with my life was to be a guinea pig/test subject for others. However, I have always said that if something good could come from what I've been through then I could come to terms with it all and move forward. The email brought me a large sense of satisfaction knowing that a person was likely spared from the same path I was dragged down unwillingly. I'm able to now bring awareness to this issue so those who are contemplating the procedure can make as educated of a decision as possible given the complexity of this "simple" surgery.
So where do things stand with me? Well, my last platelet count a few weeks ago was 331,000, which is extremely healthy. My physician put it best when she said "Whatever auto-immune thing your body was going through appears to have resolved itself, or its in remission." Can you tell she is one of the skeptics when it comes to implant reactions? She is, but at least she still treats me like a person and is more open-minded than others I've come across. It's hard to believe that back in February my platelet count was 9,000. That is a huge jump, and the only difference is that now I am nickel-free. Physicians might doubt my pain levels, but blood work doesn't lie.
Pain-wise I'm definitely better off than I was a year ago, but I have a long ways to go. My body took a beating for over three years, I can't expect it to clear up overnight. At least now I'm starting to have 20-30 minute periods a few days a week where I feel close to perfect. No pain, nothing. It usually comes when I'm at work; I'd rather have it during my down time, but I won't complain! Tylenol arthritis has been a big friend of mine lately, as well as glucosamine even though it likes to shred my stomach. The big ingredient is shellfish, which I'm allergic to, but because I feel it helps with the joint pain I continue to take it.
I had been dealing with some unexplained foot pain for at least a year now, separate from what I dealt with before the surgery. I finally broke down and saw a podiatrist recently who confirmed that I have plantar fasciitis, which can often be caused by spine problems. I'm in a severe state, but it can luckily be treated with stretching - lots of stretching. It's something I'll likely deal with for the rest of my life, but already I'm noticing a difference by simply stretching several times throughout the day.
I go back to Baltimore for my one-year follow-up in December with my spine surgeon, so I'm hoping he's pleased with the results so far. It's hard to believe exactly one year ago tomorrow I was packing up and ready to head to Baltimore when I received the news from The Cleveland Clinic that my platelets were way too low (32,000) and they wouldn't approve me for surgery. It was one of the lowest days of my life, and the only time I've ever yelled at a doctor (though it was greatly deserved). What a difference a year makes.
Some days I feel like the progress isn't where I wanted it to be, but realistically I don't think I could be much better at this point. Day-to-day it's hard to see changes, but when I look at it month to month, or year to year, the changes become clearer. I am a long ways away from having the health I had prior to all of this mess back in May 2005, but I don't feel it's unobtainable. It will just take time.
With Thanksgiving coming up, it's a great time to reflect upon what you are thankful for. I am thankful for a husband who is my best friend and biggest supporter, and has helped me find strength even when I didn't think I had any left. I am thankful for parents who are always there for me, day or night. I am thankful for a brother who I know is always there, even when his schedule is ridiculous and we can rarely talk. I am thankful for my grandparents, aunts, uncles, and cousins who have provided a huge net of love and encouragement. I am thankful for the people I call my friends who provide me with an outlet to just be "normal", have fun, and enjoy life as much as possible. I definitely have a lot to be grateful for.
I'll try to post an update when I have my one-year follow-up. Depending on the outcome, I'm thinking I may close out this blog at the end of 2009 and go back to my regular one instead. I'd like 2010 to be a life that is not so impacted by "my failed ADR experiment." It feels like it's time to move on.
Monday, August 10, 2009
Almost 8 Months Post-Op
Not much to write here. It's been a weird few months. I've fallen twice; yes, I'm a klutz. I had carpal tunnel surgery- right hand. Two days later a white van decided to merge into my lane with me being right next to them and I had to utilize my just-operated-on hand to quickly get onto the shoulder & steady myself from not going off the road entirely. That certainly hurt! Then last Thursday a cat ran right in front of me while going 30 mph, which caused muscle strains in my neck and mid-back. So, it's really hard for me to say how I'm feeling these days with all of the oddities occurring.
I'm not where I hoped I would be at eight months. Granted, it really is six months if you start counting from the time I had the IVC filter removed, which is when the last of the nickel was removed from my system. It's frustrating, complicated...I just try to do the best I can. Time will tell.
In the meantime I'm keeping busy with work. I also started a new little project that will be keeping me preoccupied for the next month or so - opposing the health care bill. I feel that changes to the health care system should be led by the medical community (and maybe some experienced patients like myself), not politicians. But that's just me. While I've avoided reading the talking points of the various parties, I instead read the bill and came to my own conclusion. Since I've spent 2/3 of my life dealing with the health system, you can imagine I have my own ideas. I'm not going to bore you with the details, but if you're interested in learning about what I'm doing let me know. I've basically started a petition, a new blog...I'm really trying to saturate the web as much as one person can while still holding down a 40+ hour/week job. It's taken a lot of work to get things organized, but it gives what I've been through some purpose. If I can do anything to help prevent someone else from going through what I've been through, then I will certainly feel like all of this was for a reason after all.
I hope everyone out there is happy, healthy, and doing well. I wish you all the best.
I'm not where I hoped I would be at eight months. Granted, it really is six months if you start counting from the time I had the IVC filter removed, which is when the last of the nickel was removed from my system. It's frustrating, complicated...I just try to do the best I can. Time will tell.
In the meantime I'm keeping busy with work. I also started a new little project that will be keeping me preoccupied for the next month or so - opposing the health care bill. I feel that changes to the health care system should be led by the medical community (and maybe some experienced patients like myself), not politicians. But that's just me. While I've avoided reading the talking points of the various parties, I instead read the bill and came to my own conclusion. Since I've spent 2/3 of my life dealing with the health system, you can imagine I have my own ideas. I'm not going to bore you with the details, but if you're interested in learning about what I'm doing let me know. I've basically started a petition, a new blog...I'm really trying to saturate the web as much as one person can while still holding down a 40+ hour/week job. It's taken a lot of work to get things organized, but it gives what I've been through some purpose. If I can do anything to help prevent someone else from going through what I've been through, then I will certainly feel like all of this was for a reason after all.
I hope everyone out there is happy, healthy, and doing well. I wish you all the best.
Tuesday, June 30, 2009
Finally - GREAT news!
I had a platelet count today along with a bleeding time test in preparation for my carpal tunnel surgery on July 15. The bleeding test didn't go so well...16 minutes to stop after being given a small cut in my arm, when normally it should have been 10 minutes. I was worried, and awaiting a call from the hospital on my home answering machine telling me that my platelet count was too low, that I could die, not to do anything, go to an ER, etc.
So my dad works with the surgeon who is performing the surgery, and he was sent the platelet count and bleeding test results. My dad had told him about the bleeding test (because I asked him to), and he was concerned. However, my platelet count came back at 190,000. Not 19,000...which is my usual "range". 190,000. The surgeon thought they made a mistake and asked them to run it again, which they did, and that test came out at 194,000. Normal is 150,000...I AM NORMAL!!!
Because of the anti-inflammatory meds I'm taking for pain the surgeon concluded that was the reason for the poor results of the bleeding test. But given my platelets are normal, I'm set to go for surgery.
I haven't had much good news to share on this blog, so I had to share this. I have felt for some time that my symptoms are not what they were before the surgery. I have felt like I've been left with a lot of joint damage and suffering from pain as a result, especially in my hips, knees and ankles and feet. I was frustrated at my low platelet count, but the last one I had was in April about two months after they removed the last of the nickel from my system. It was around 20,000 then, I believe. Now it's been over four months since the nickel removal, and I have a normal count again. And I'm just shocked.
I wouldn't be surprised if I go in for another test at some point and it's low again, but for today I have a normal count. I haven't been above 150,000 since 2007 or possibly earlier than that. When I had my 2nd surgery in 2007 my platelets were at 110,000; a year later they were the same, but then took a nose-dive in the months following. Since November my highest count - without steroids or a transfusion - was 36,000. I've usually been lower than 20,000, and have been as low as 9,000. To go up 180,000 platelets in about four and a half months time is just awesome. I am so very, very happy right now.
It's a small victory today. I still hurt horribly, but I have platelets. At least for today, in my mind, I feel like what I had assumed for several years really was the truth - the metal allergy caused my downfall in health. I was brushed off, laughed at, ignored and made to feel like an idiot and a liar by doctors and nurses. But blood tests don't lie, and today is a victory for me, and one step towards proving that I was right. I hope there are more tests like this to follow. If this is the case, I think there are several people out there who have similar symptoms like me with no diagnosis; this could be their ticket to a normal life. But to prove the case you need test results to back it up, and now I have one in my favor.
So my dad works with the surgeon who is performing the surgery, and he was sent the platelet count and bleeding test results. My dad had told him about the bleeding test (because I asked him to), and he was concerned. However, my platelet count came back at 190,000. Not 19,000...which is my usual "range". 190,000. The surgeon thought they made a mistake and asked them to run it again, which they did, and that test came out at 194,000. Normal is 150,000...I AM NORMAL!!!
Because of the anti-inflammatory meds I'm taking for pain the surgeon concluded that was the reason for the poor results of the bleeding test. But given my platelets are normal, I'm set to go for surgery.
I haven't had much good news to share on this blog, so I had to share this. I have felt for some time that my symptoms are not what they were before the surgery. I have felt like I've been left with a lot of joint damage and suffering from pain as a result, especially in my hips, knees and ankles and feet. I was frustrated at my low platelet count, but the last one I had was in April about two months after they removed the last of the nickel from my system. It was around 20,000 then, I believe. Now it's been over four months since the nickel removal, and I have a normal count again. And I'm just shocked.
I wouldn't be surprised if I go in for another test at some point and it's low again, but for today I have a normal count. I haven't been above 150,000 since 2007 or possibly earlier than that. When I had my 2nd surgery in 2007 my platelets were at 110,000; a year later they were the same, but then took a nose-dive in the months following. Since November my highest count - without steroids or a transfusion - was 36,000. I've usually been lower than 20,000, and have been as low as 9,000. To go up 180,000 platelets in about four and a half months time is just awesome. I am so very, very happy right now.
It's a small victory today. I still hurt horribly, but I have platelets. At least for today, in my mind, I feel like what I had assumed for several years really was the truth - the metal allergy caused my downfall in health. I was brushed off, laughed at, ignored and made to feel like an idiot and a liar by doctors and nurses. But blood tests don't lie, and today is a victory for me, and one step towards proving that I was right. I hope there are more tests like this to follow. If this is the case, I think there are several people out there who have similar symptoms like me with no diagnosis; this could be their ticket to a normal life. But to prove the case you need test results to back it up, and now I have one in my favor.
Monday, June 22, 2009
6 Months, 7 Days
Last week at my 6-month post surgery mark I spent it at the doctors office receiving treatment from a very uncomfortable and painful allergic reaction I had to an over-the-counter arthritis cream. I thought about posting, but was honestly too exhausted and miserable.
I tend to ramble, so my goal today is to keep this short. I'm in a lot of pain these days. Fell last Sunday at a Home Depot thanks to a pothole in the street that I completely did not notice (hence the cream I tried on my knees and ankles), which surprisingly didn't do much damage - thankfully. I'm having carpal tunnel surgery on my right hand on Wednesday, July 15. Will probably have the left one done a month or two after that, just depends on my work schedule. It is a very simple procedure compared to everything else I'm used to, so it's really nothing I'm worried about.
I'm compiling a list of diseases that people think I have and am slowly trying to rule them out one by one. I'm still in the mode where I just don't want to spend my time with doctors or tests. I'm trying to "move on" despite everything. I just keep working, keep trying to live as much of a "normal" life as possible, though I know it's far from normal. So I will slowly but surely make my way from doctor to doctor, and will let everyone know if something actually comes up. I'm not holding my breath.
My spine is doing great, though it appears every time we have a weather change it can get aggravated. Yesterday was a pretty bad pain day, and last night was horrible. Every night is bad, but when nothing you take helps, that's when it becomes horrible.
I knew going into the surgery it might not cure everything, and it obviously hasn't. I also knew that I had to move on no matter what the outcome, so that's what I'm doing. I hope people don't take it as giving up...I just need to stop delaying what I want to do in life, thinking that I'll do it "when I'm better." The bottom line is, there may not be a "when I'm better." So I'm slowly learning to live with what I have, and at the same time keeping my eyes and ears open for anything that may help improve my life. I don't wish to be this way, but will understand if it's meant to be this way. Not everything in our lives can be the way we want it. In the meantime you just have to live life with what God gives you and be grateful for it.
I tend to ramble, so my goal today is to keep this short. I'm in a lot of pain these days. Fell last Sunday at a Home Depot thanks to a pothole in the street that I completely did not notice (hence the cream I tried on my knees and ankles), which surprisingly didn't do much damage - thankfully. I'm having carpal tunnel surgery on my right hand on Wednesday, July 15. Will probably have the left one done a month or two after that, just depends on my work schedule. It is a very simple procedure compared to everything else I'm used to, so it's really nothing I'm worried about.
I'm compiling a list of diseases that people think I have and am slowly trying to rule them out one by one. I'm still in the mode where I just don't want to spend my time with doctors or tests. I'm trying to "move on" despite everything. I just keep working, keep trying to live as much of a "normal" life as possible, though I know it's far from normal. So I will slowly but surely make my way from doctor to doctor, and will let everyone know if something actually comes up. I'm not holding my breath.
My spine is doing great, though it appears every time we have a weather change it can get aggravated. Yesterday was a pretty bad pain day, and last night was horrible. Every night is bad, but when nothing you take helps, that's when it becomes horrible.
I knew going into the surgery it might not cure everything, and it obviously hasn't. I also knew that I had to move on no matter what the outcome, so that's what I'm doing. I hope people don't take it as giving up...I just need to stop delaying what I want to do in life, thinking that I'll do it "when I'm better." The bottom line is, there may not be a "when I'm better." So I'm slowly learning to live with what I have, and at the same time keeping my eyes and ears open for anything that may help improve my life. I don't wish to be this way, but will understand if it's meant to be this way. Not everything in our lives can be the way we want it. In the meantime you just have to live life with what God gives you and be grateful for it.
Tuesday, June 2, 2009
5-1/2 Months
I decided to take a few weeks off from my health, hence the lack of posting. I sometimes get to a point where I just need a break from doctors visits, tests, etc., so I instead focus all of my energy on other things. That's not to say I haven't been feeling horrible, because I have; I just chose to try and ignore it and move on with my life.
During my break I spent most of it hard at work, but also managed a little fun time as well. I saw a few old co-workers/friends for a nice lunch. Brad and I went to Cincinnati (actually right spent most of it across the river in Kentucky) for a couple of days during the Memorial Day holiday, which was mentally and emotionally refreshing. It was nice to just hang out, not have a schedule and just take it easy for about 48 hours. We also spent about a half a day with an old friend of mine that I had not seen in a couple of years, and just had a wonderful, fun time.
Unfortunately I'm back to the pain levels I was at before the surgery with my legs, and where I was back in January with my arms and hands. The cortisone injections I had in both wrists back in February helped a lot, but I think with the driving to/from Baltimore and all of the time spent at work on the computer I'm now back to wearing splints 90% of my day. I'm also back to the severe nighttime pain; I've woken up three nights in a row with the horrible arm pain and have had to sleep in the recliner in order to keep the pain as minimal as possible. The leg pain is unexplainable. My joints are very swollen and the pain radiates from them. It does appear different than before the surgery. Every step is painful, and even just sitting is horrible. The only position semi-comfortable is in the recliner, leaned back, sitting indian-style with my knees, calves and feet on a pillow.
As for the game plan, I have a few things I know need to do. 1) Make an appointment with my primary care doctor. My mom thinks I could have celiac disease so I'm going to get tested. Brad wants me to get tested for Lyme again, since I did have it for four years as a kid. I'm not as convinced on either, but we'll see what the tests say. 2) Make an appointment with a rheumatologist. My ANA count is still too high and my platelet count still too low. 3) Make an appointment with the hand surgeon and come up with a date for the carpal tunnel surgery. The soonest they could get me in for a visit is mid-July, so I'm going to play the "privileged" card here and see if my dad can talk with the doctor and get me in sooner. The doctor is also the chief medical officer so they work together daily and have a good relationship. Compared to everything else I've been through the hand surgery should be a pretty simple procedure and recovery. I just need to time it correctly so I'm not having it done during an important time in the work cycle.
I can't say I'm happy to still be in this position, but there's nothing I can do about it. I'm a bit sick of it all, but I don't have a choice in the matter. But...there are worse things.
During my break I spent most of it hard at work, but also managed a little fun time as well. I saw a few old co-workers/friends for a nice lunch. Brad and I went to Cincinnati (actually right spent most of it across the river in Kentucky) for a couple of days during the Memorial Day holiday, which was mentally and emotionally refreshing. It was nice to just hang out, not have a schedule and just take it easy for about 48 hours. We also spent about a half a day with an old friend of mine that I had not seen in a couple of years, and just had a wonderful, fun time.
Unfortunately I'm back to the pain levels I was at before the surgery with my legs, and where I was back in January with my arms and hands. The cortisone injections I had in both wrists back in February helped a lot, but I think with the driving to/from Baltimore and all of the time spent at work on the computer I'm now back to wearing splints 90% of my day. I'm also back to the severe nighttime pain; I've woken up three nights in a row with the horrible arm pain and have had to sleep in the recliner in order to keep the pain as minimal as possible. The leg pain is unexplainable. My joints are very swollen and the pain radiates from them. It does appear different than before the surgery. Every step is painful, and even just sitting is horrible. The only position semi-comfortable is in the recliner, leaned back, sitting indian-style with my knees, calves and feet on a pillow.
As for the game plan, I have a few things I know need to do. 1) Make an appointment with my primary care doctor. My mom thinks I could have celiac disease so I'm going to get tested. Brad wants me to get tested for Lyme again, since I did have it for four years as a kid. I'm not as convinced on either, but we'll see what the tests say. 2) Make an appointment with a rheumatologist. My ANA count is still too high and my platelet count still too low. 3) Make an appointment with the hand surgeon and come up with a date for the carpal tunnel surgery. The soonest they could get me in for a visit is mid-July, so I'm going to play the "privileged" card here and see if my dad can talk with the doctor and get me in sooner. The doctor is also the chief medical officer so they work together daily and have a good relationship. Compared to everything else I've been through the hand surgery should be a pretty simple procedure and recovery. I just need to time it correctly so I'm not having it done during an important time in the work cycle.
I can't say I'm happy to still be in this position, but there's nothing I can do about it. I'm a bit sick of it all, but I don't have a choice in the matter. But...there are worse things.
Tuesday, May 19, 2009
5 months, 4 days
Five months ago today I was back at my hotel after a four day stay in the hospital. I had a back brace, a walker, and drove Brad and my mom crazy in trying to get a hotel room chair fitted just right so I could sit in it comfortably (it took six pillows). I had over 50 staples in me (front and back), and was just starting to eat food again.
I can't complain. No more back brace, no walker. The incisions have healed nicely. I still have trouble getting comfortable, but I only need two pillows these days instead of six. The best part is that I can do it on my own. Again, I can't complain.
As this is a journal for me to track my progress and to refer to as I visit future doctors - and there will be more visits - I will state that I am still in pain. A lot of pain, mostly in my legs from my hips to my toes. I'm having difficulty walking, and tend to shuffle and limp about. Sleeping is getting more difficult again, and the numbness in my hands and arms is returning. But you know what? Life goes on. I'm keeping busy with work and trying to do as much normal stuff as possible. I know it's not "normal" for most people, but it's the closest I can be to it right now for me. I'm forced to wait on more physician visits, more tests, more results. Until then my plan is to just keep going along. I may struggle to walk across a room, and I may not be able to do a lot normal activities that others can, but I'm here. I don't think I have a life threatening disease, so who am I to complain? It certainly doesn't do any good to do so, so why bother?
So today I choose to look at the progress I have made. Many have had similar surgeries and were still home bound at this point. I was working from my hospital bed right after my surgery. I was back at work part time in a month, and drove to Baltimore - a 6-1/2 hour trip - in less than two months after the surgery. The bone has grown in where it needs to, I have good mobility in my spine, and now that I don't have physical therapy messing me up my back is feeling great. And most importantly, I survived a surgery that was considered unbelievably high-risk; honestly, very few of you know the dangers that were involved and how often I was told that I could easily die on the table or in the days following. Fusions are not as dangerous, but taking that artificial disc out was. I feel indescribably lucky to be here.
So, all in all, not a bad five months. I think it's better to look at progress in the long term vs. short term. It's harder to see progress week by week. Today I needed to take a look at the bigger picture - my "five month" picture. And while it's nowhere near perfect, it's not bad either.
I can't complain. No more back brace, no walker. The incisions have healed nicely. I still have trouble getting comfortable, but I only need two pillows these days instead of six. The best part is that I can do it on my own. Again, I can't complain.
As this is a journal for me to track my progress and to refer to as I visit future doctors - and there will be more visits - I will state that I am still in pain. A lot of pain, mostly in my legs from my hips to my toes. I'm having difficulty walking, and tend to shuffle and limp about. Sleeping is getting more difficult again, and the numbness in my hands and arms is returning. But you know what? Life goes on. I'm keeping busy with work and trying to do as much normal stuff as possible. I know it's not "normal" for most people, but it's the closest I can be to it right now for me. I'm forced to wait on more physician visits, more tests, more results. Until then my plan is to just keep going along. I may struggle to walk across a room, and I may not be able to do a lot normal activities that others can, but I'm here. I don't think I have a life threatening disease, so who am I to complain? It certainly doesn't do any good to do so, so why bother?
So today I choose to look at the progress I have made. Many have had similar surgeries and were still home bound at this point. I was working from my hospital bed right after my surgery. I was back at work part time in a month, and drove to Baltimore - a 6-1/2 hour trip - in less than two months after the surgery. The bone has grown in where it needs to, I have good mobility in my spine, and now that I don't have physical therapy messing me up my back is feeling great. And most importantly, I survived a surgery that was considered unbelievably high-risk; honestly, very few of you know the dangers that were involved and how often I was told that I could easily die on the table or in the days following. Fusions are not as dangerous, but taking that artificial disc out was. I feel indescribably lucky to be here.
So, all in all, not a bad five months. I think it's better to look at progress in the long term vs. short term. It's harder to see progress week by week. Today I needed to take a look at the bigger picture - my "five month" picture. And while it's nowhere near perfect, it's not bad either.
Friday, May 8, 2009
May 7 Appt
I'm writing this half awake, but will try to be short and coherent. I went to Baltimore yesterday, ended up driving. It just didn't make sense to spend so much money to fly there and rent a car, and I do usually enjoy driving if the pain is manageable. The appointment was at 2pm, so I didn't have to leave early to get there on time.
The surgeon was late seeing me - almost two hours late, which I'm used to here in Cleveland but not with him. Busy day. We only spent about 10 minutes together, but we went through the newest x-rays and in terms of L5/S1, everything is perfect. Bone has grown in perfectly, the alignment is perfect and the other discs above it are all still aligned (which can be a concern with fusion, I guess). The surgeon agreed with me to stop attending physical therapy and to just do my own routine, which I was happy with. I know what I can and cannot do, and we have a health center about 10 minutes from here that we've belonged to in the past that I'll just start using again. He stated that based on the condition he found all of the old hardware in my back, it had appeared to be pressing on several nerves and said it would take time for those nerves to heal. We discussed my most recent blood results and he agreed that a rhuematologist was a logical path to follow. If I can't find a good one here, then he offered to hook me up with one there. Obviously a Cleveland doctor would be more convenient, and I just happened to receive an email from a friend of mine today about a good guy to see (thank you, Donna!).
In regards to how I am doing compared to others in my position, I guess I am ahead of the pack. The surgeon thought I was doing amazing for a 6-month followup, but when I reminded him it wasn't quite 5-months yet he said "even more amazing." He asked if I had returned to work, and reminded him that I had returned back in January, which once again he was impressed with, along with the fact that I drove there and back. He gave me a rating of a "5 out of 5" and said he'd like to see me in December to see where I'm at a year after the surgery. Was told I should still expect pain from the nerve damage and from the other mysterious symptoms I'm experiencing, so I should continue to take medications as needed.
I stayed at the hospital for about 30 minutes after the appointment to get online and do a few work things that I couldn't do from my phone, then got back in the car and headed home. I was going to try a new route through Pennsylvania since I-76 was just all construction (with little activity, at least driving to Maryland; there was more activity in the evening), but in Harrisburg I missed my chance and ended up going the same way home. With the hills and mountains it's a tough state to drive through, as there are very few roads that head northwest/southeast (most head northeast/southwest), and very few main roads in general. Construction and all of the cops they have on the road make it a tough state to navigate through, and I'm surprised I didn't get a ticket for something along the way. There are so many places where they have the speed limit down to 40 mph for no reason - I think - other than to make it a speed trap. I got to spend about three hours on the phone with a friend of mine I hadn't spoken to in a long time which certainly helped the trip (thank you Moe!), but arrived home at 11:45pm very sore and very awake. I think I finally fell asleep around 3am, then woke up around 10:30 as I had a few things for work to do at home before noon. I don' know why I'm so tired, but I am. I have a feeling I'll be taking an afternoon nap.
So I survived the trip ok. I need to get ready for the day and head over to my primary care office to pick up an order for blood work #2; they are going to test the platelet count again. I'm a bit worried it will be lower (don't ask me why, it's not like my brain can tell), but there's nothing I can do about it this weekend. Brad starts a one-week intensive class tomorrow that lasts a week, so I'll hardly see him this upcoming week. After this class he'll only have one more left before he's done with his MBA, so we're both happy about that. Our summer is pretty free, and hopefully I can get some sort of diagnosis/treatment that will allow me to do some traveling and enjoy life.
Thank you all out there for the well wishes. I hope you all are having a great week, and have a great Mother's Day weekend to all you mom's out there. To my mom and Grandma Grimm, I want to give a special shout-out, as I would not be who I am without these two great ladies. I really lucked out in the family department.
The surgeon was late seeing me - almost two hours late, which I'm used to here in Cleveland but not with him. Busy day. We only spent about 10 minutes together, but we went through the newest x-rays and in terms of L5/S1, everything is perfect. Bone has grown in perfectly, the alignment is perfect and the other discs above it are all still aligned (which can be a concern with fusion, I guess). The surgeon agreed with me to stop attending physical therapy and to just do my own routine, which I was happy with. I know what I can and cannot do, and we have a health center about 10 minutes from here that we've belonged to in the past that I'll just start using again. He stated that based on the condition he found all of the old hardware in my back, it had appeared to be pressing on several nerves and said it would take time for those nerves to heal. We discussed my most recent blood results and he agreed that a rhuematologist was a logical path to follow. If I can't find a good one here, then he offered to hook me up with one there. Obviously a Cleveland doctor would be more convenient, and I just happened to receive an email from a friend of mine today about a good guy to see (thank you, Donna!).
In regards to how I am doing compared to others in my position, I guess I am ahead of the pack. The surgeon thought I was doing amazing for a 6-month followup, but when I reminded him it wasn't quite 5-months yet he said "even more amazing." He asked if I had returned to work, and reminded him that I had returned back in January, which once again he was impressed with, along with the fact that I drove there and back. He gave me a rating of a "5 out of 5" and said he'd like to see me in December to see where I'm at a year after the surgery. Was told I should still expect pain from the nerve damage and from the other mysterious symptoms I'm experiencing, so I should continue to take medications as needed.
I stayed at the hospital for about 30 minutes after the appointment to get online and do a few work things that I couldn't do from my phone, then got back in the car and headed home. I was going to try a new route through Pennsylvania since I-76 was just all construction (with little activity, at least driving to Maryland; there was more activity in the evening), but in Harrisburg I missed my chance and ended up going the same way home. With the hills and mountains it's a tough state to drive through, as there are very few roads that head northwest/southeast (most head northeast/southwest), and very few main roads in general. Construction and all of the cops they have on the road make it a tough state to navigate through, and I'm surprised I didn't get a ticket for something along the way. There are so many places where they have the speed limit down to 40 mph for no reason - I think - other than to make it a speed trap. I got to spend about three hours on the phone with a friend of mine I hadn't spoken to in a long time which certainly helped the trip (thank you Moe!), but arrived home at 11:45pm very sore and very awake. I think I finally fell asleep around 3am, then woke up around 10:30 as I had a few things for work to do at home before noon. I don' know why I'm so tired, but I am. I have a feeling I'll be taking an afternoon nap.
So I survived the trip ok. I need to get ready for the day and head over to my primary care office to pick up an order for blood work #2; they are going to test the platelet count again. I'm a bit worried it will be lower (don't ask me why, it's not like my brain can tell), but there's nothing I can do about it this weekend. Brad starts a one-week intensive class tomorrow that lasts a week, so I'll hardly see him this upcoming week. After this class he'll only have one more left before he's done with his MBA, so we're both happy about that. Our summer is pretty free, and hopefully I can get some sort of diagnosis/treatment that will allow me to do some traveling and enjoy life.
Thank you all out there for the well wishes. I hope you all are having a great week, and have a great Mother's Day weekend to all you mom's out there. To my mom and Grandma Grimm, I want to give a special shout-out, as I would not be who I am without these two great ladies. I really lucked out in the family department.
Monday, May 4, 2009
Results - Part 2
I received the rest of my test results on Friday. Thyroid and antibodies were normal, but my anti-nuclear antibody (ANA) count was still just as high in one test but lower in a second test. (They look at the count two ways). I am going to be referred to a rheumatologist (this time not a Cleveland Clinic one), and will have my platelet count tested again at the end of this week. I'm hoping it's above 19,000 and not lower.
My weekend was hell. I'm still on some paid meds, and had been working so much I didn't realize how close I was to running out of my key one. I placed the call Friday morning, but the only doctor who would normally handle the prescriptions was out getting married, so no prescription refill for me. Knowing I had to conserve what I had, I was basically med-free all weekend and it was a huge wake-up call. I am far from being cured.
On several occasions I debated in my head whether to head to an ER, but was in such a messed up state that I couldn't think straight and ended up staying at home all weekend, going from chair to couch to bed, with pillows and various positions, trying to get the pain in my legs and back to settle down with no success. I saved what little medication I had for the evening time so I could get a little sleep, which helped only a little on Friday and Saturday but luckily on Sunday evening I was finally able to rest successfully, only waking up a few times. I'm sure I drove Brad crazy, as I was literally unable to sit or lie still most of the weekend, desperately trying to get the pain to get to a level that I could tolerate. I was a useless wreck of a person, going crazy in my own mind as to why I was going through this torture.
One reason for my situation is physical therapy. I had no back pain when I started my sessions, but I do now. I find that further I get from my last appointment, the better I feel. Today is Monday, it's been five days since my last appointment and my back is finally not killing me like it was all weekend. It was like that last week as well; I had four days of torture (but I had medications to help), then on day four things settled down, I went to physical therapy and by that evening I was miserable again. So no more physical therapy for me, not unless someone can give me a good reason why.
As for everything else, I have no explanation. I saw the last 15 minutes of a show called Mystery Diagnosis on Saturday evening. Had never seen the show, but while Brad was upstairs decided to tune in. Ironically it was about a 40-some year old woman with similar symptoms and almost identical ANA results. It took her nine months for a diagnosis, but in the end she had an auto-immune disease called Scleroderma. She was undiagnosed the first time she saw a rheumatologist because she showed no outward physical signs of an auto-immune illness. I found myself in tears...the story hit too close to home. I felt horrible for her. In some ways I was jealous it only took her nine months of questioning and tests. In other ways I feared a similar fate, a diagnosis with no treatment options. I doubt I have what she has, but each day that goes by makes it more likely that the nickel wasn't the cause of my ills after all. The surgery took away the back pain (as long as I keep the physical therapy people away from me), but I'm still not right. My blood work proves that.
So while this weekend was a waste of time, this week I must get back to being productive at work and prepare for the long drive and back (all in one day) to/from Baltimore to see the spine surgeon for a follow-up. I'm hoping there might be someone he can recommend there, as I have little faith in the doctors in this town. I guess we'll see. At least they refilled my medication this afternoon, so I will actually be able to have a good night's sleep. I hate taking medications, but it's obvious that right now that is the only way I can be a semi-productive individual in society.
My weekend was hell. I'm still on some paid meds, and had been working so much I didn't realize how close I was to running out of my key one. I placed the call Friday morning, but the only doctor who would normally handle the prescriptions was out getting married, so no prescription refill for me. Knowing I had to conserve what I had, I was basically med-free all weekend and it was a huge wake-up call. I am far from being cured.
On several occasions I debated in my head whether to head to an ER, but was in such a messed up state that I couldn't think straight and ended up staying at home all weekend, going from chair to couch to bed, with pillows and various positions, trying to get the pain in my legs and back to settle down with no success. I saved what little medication I had for the evening time so I could get a little sleep, which helped only a little on Friday and Saturday but luckily on Sunday evening I was finally able to rest successfully, only waking up a few times. I'm sure I drove Brad crazy, as I was literally unable to sit or lie still most of the weekend, desperately trying to get the pain to get to a level that I could tolerate. I was a useless wreck of a person, going crazy in my own mind as to why I was going through this torture.
One reason for my situation is physical therapy. I had no back pain when I started my sessions, but I do now. I find that further I get from my last appointment, the better I feel. Today is Monday, it's been five days since my last appointment and my back is finally not killing me like it was all weekend. It was like that last week as well; I had four days of torture (but I had medications to help), then on day four things settled down, I went to physical therapy and by that evening I was miserable again. So no more physical therapy for me, not unless someone can give me a good reason why.
As for everything else, I have no explanation. I saw the last 15 minutes of a show called Mystery Diagnosis on Saturday evening. Had never seen the show, but while Brad was upstairs decided to tune in. Ironically it was about a 40-some year old woman with similar symptoms and almost identical ANA results. It took her nine months for a diagnosis, but in the end she had an auto-immune disease called Scleroderma. She was undiagnosed the first time she saw a rheumatologist because she showed no outward physical signs of an auto-immune illness. I found myself in tears...the story hit too close to home. I felt horrible for her. In some ways I was jealous it only took her nine months of questioning and tests. In other ways I feared a similar fate, a diagnosis with no treatment options. I doubt I have what she has, but each day that goes by makes it more likely that the nickel wasn't the cause of my ills after all. The surgery took away the back pain (as long as I keep the physical therapy people away from me), but I'm still not right. My blood work proves that.
So while this weekend was a waste of time, this week I must get back to being productive at work and prepare for the long drive and back (all in one day) to/from Baltimore to see the spine surgeon for a follow-up. I'm hoping there might be someone he can recommend there, as I have little faith in the doctors in this town. I guess we'll see. At least they refilled my medication this afternoon, so I will actually be able to have a good night's sleep. I hate taking medications, but it's obvious that right now that is the only way I can be a semi-productive individual in society.
Sunday, April 26, 2009
Results - Part 1
I saw my primary care physician on Friday and blood work was ordered - platelet count, ANA level and thyroid levels. The platelet count is one that is done immediately, and unfortunately by yesterday afternoon I found a message on our answering machine saying my count was 19,000. As we were out most of yesterday, the doctor on call called again at 10:30pm, stating her concern, blah blah blah, I've heard it all before.
To say I'm disappointed is an understatement. More like crushed. I need to see the other results before I have a clear picture of things. It will probably be several more days before I know the rest of the picture.
It's frustrating. I have no symptoms that go with a low platelet count. I have a paper cut, I don't bleed more than any normal person. I'm not having nose or gum bleeds, or other symptoms that usually go along with a low platelet count. I know it was 110,000 February 2008, which was below the norm but not alarming; what happened since then? Physical therapy has made the pain worse, not better. I was doing so much better in late February/early March, but I just can't seem to get back to that place. I wonder what my platelet count would have been then if I had a chance to see the doctor at that time.
So I'm now back in horrible pain, low platelet count and my spirits are pretty down. Basically right where I was six months ago.
It's a Sunday. Nothing I can do. Today the plan is to do some work from home, and to maybe work on priming our downstairs woodwork in the kitchen, dining room and bathroom area as we're getting Villa Stone tile put in in a few weeks. We already painted the woodwork in our living room white shortly after we moved in, and it looks amazing. It's been a goal of mine to paint the rest of it, and now I have motivation to at least finish the first floor before the new flooring is in. That way I don't have to worry if a little white paint gets on our current cheap vinyl flooring. I was waiting until I felt better, but now I'm not convinced that will ever happen. Life goes on.
Maybe the other tests will show some improvement, but maybe they won't. Until I know those results I have no options but to wait. I know this is a "downer" in regards to a post, but I'm pretty down right now and to write with positivity and happiness would be a complete lie. As I've mentioned before, this is not just an update for those I know, but a record for myself to refer to for future doctors visits and who knows what else in the future. Don't worry about me, I'm unfortunately used to all of this. And after my last physical therapy appointment next week I should be back to minimal back pain, so at least the surgery fixed something.
To say I'm disappointed is an understatement. More like crushed. I need to see the other results before I have a clear picture of things. It will probably be several more days before I know the rest of the picture.
It's frustrating. I have no symptoms that go with a low platelet count. I have a paper cut, I don't bleed more than any normal person. I'm not having nose or gum bleeds, or other symptoms that usually go along with a low platelet count. I know it was 110,000 February 2008, which was below the norm but not alarming; what happened since then? Physical therapy has made the pain worse, not better. I was doing so much better in late February/early March, but I just can't seem to get back to that place. I wonder what my platelet count would have been then if I had a chance to see the doctor at that time.
So I'm now back in horrible pain, low platelet count and my spirits are pretty down. Basically right where I was six months ago.
It's a Sunday. Nothing I can do. Today the plan is to do some work from home, and to maybe work on priming our downstairs woodwork in the kitchen, dining room and bathroom area as we're getting Villa Stone tile put in in a few weeks. We already painted the woodwork in our living room white shortly after we moved in, and it looks amazing. It's been a goal of mine to paint the rest of it, and now I have motivation to at least finish the first floor before the new flooring is in. That way I don't have to worry if a little white paint gets on our current cheap vinyl flooring. I was waiting until I felt better, but now I'm not convinced that will ever happen. Life goes on.
Maybe the other tests will show some improvement, but maybe they won't. Until I know those results I have no options but to wait. I know this is a "downer" in regards to a post, but I'm pretty down right now and to write with positivity and happiness would be a complete lie. As I've mentioned before, this is not just an update for those I know, but a record for myself to refer to for future doctors visits and who knows what else in the future. Don't worry about me, I'm unfortunately used to all of this. And after my last physical therapy appointment next week I should be back to minimal back pain, so at least the surgery fixed something.
Tuesday, April 21, 2009
Week 17/18
I'm combining two weeks progress here. April 15 marked my four month anniversary of my surgery; April 14 marked the two-month mark of getting the IVC filter removed. How am I doing? Right now - horrible. Today has been my best day in a few weeks, but that is not saying much.
The pain is different from before the surgery, but I can now officially say that physical therapy has made things drastically worse, not better. That was confirmed last Thursday when I went in for my appointment and found I had no reflex in in my right foot, and couldn't stand on my right leg, toes, or heal. After an assessment by the owner and the individual I was working with that day, they came to the conclusion that everything they have had me doing has been wrong. It appears that the stretches and exercises have put pressure on my nerve canal, so I'm now experiencing horrible, crippling nerve pain. That was actually somewhat good news...they could tell by certain movements that the pain was nerve-related and not something else. The bad news is that I've hardly been able to walk or move now for the last few weeks, and the pain has made life pretty miserable.
My surgeon wants me to stick with physical therapy, as I only have three more visits left. The thought is that if they keep working with me to get things back to normal that hopefully I'll get some relief soon. I will say that this morning I could actually walk semi-normally instead of my normal shuffle/struggle to move one foot a centimeter at a time. For the time being I'm not doing any stretches or exercise machine work; everything revolves around movements to take pressure off the nerve canal and electro-acupuncture. I was basically told that in my current position, even standing or walking would just aggravate things, which it does.
I do have an appointment with my primary care doc this Friday, so I'm sure she'll do some blood work and who knows what else. I will stress that my pain does feel different than before...I'm just back to being as miserable, at least these past few weeks. If I'm behind on correspondence, it's because I'm once again pretty much sticking to work and then trying to rest and calm down the pain when I'm home. I find it very hard to write when I feel so miserable; all I want to do is to try and shut my brain down and preferably sleep so I don't have to be awake for the torture. Though it takes me a long time to get to sleep, once I do I'm at least able to sleep through the night. Thank goodness for little positive things.
I'll write more next week, as I'm sure I'll have some blood test results and such to share. I'm a bit nervous, since it will be interesting to see where my numbers are - especially my ANA and platelet count.
The pain is different from before the surgery, but I can now officially say that physical therapy has made things drastically worse, not better. That was confirmed last Thursday when I went in for my appointment and found I had no reflex in in my right foot, and couldn't stand on my right leg, toes, or heal. After an assessment by the owner and the individual I was working with that day, they came to the conclusion that everything they have had me doing has been wrong. It appears that the stretches and exercises have put pressure on my nerve canal, so I'm now experiencing horrible, crippling nerve pain. That was actually somewhat good news...they could tell by certain movements that the pain was nerve-related and not something else. The bad news is that I've hardly been able to walk or move now for the last few weeks, and the pain has made life pretty miserable.
My surgeon wants me to stick with physical therapy, as I only have three more visits left. The thought is that if they keep working with me to get things back to normal that hopefully I'll get some relief soon. I will say that this morning I could actually walk semi-normally instead of my normal shuffle/struggle to move one foot a centimeter at a time. For the time being I'm not doing any stretches or exercise machine work; everything revolves around movements to take pressure off the nerve canal and electro-acupuncture. I was basically told that in my current position, even standing or walking would just aggravate things, which it does.
I do have an appointment with my primary care doc this Friday, so I'm sure she'll do some blood work and who knows what else. I will stress that my pain does feel different than before...I'm just back to being as miserable, at least these past few weeks. If I'm behind on correspondence, it's because I'm once again pretty much sticking to work and then trying to rest and calm down the pain when I'm home. I find it very hard to write when I feel so miserable; all I want to do is to try and shut my brain down and preferably sleep so I don't have to be awake for the torture. Though it takes me a long time to get to sleep, once I do I'm at least able to sleep through the night. Thank goodness for little positive things.
I'll write more next week, as I'm sure I'll have some blood test results and such to share. I'm a bit nervous, since it will be interesting to see where my numbers are - especially my ANA and platelet count.
Friday, April 10, 2009
Week 16
I know some of you still read this thing, so thank you. Hopefully I don't bore people too much. Part of my purpose in this blog is to have a record of what I've gone through; a journal that could potentially be used to help others, or to help myself if the surgery does not provide the outcome I had hoped. My memory is still not what it once was, and having a written record definitely helps. I actually have two other blogs that I have used in the past, and have gone back to them on many occasions to help piece together my story when I see new physicians or talk to others that have similar issues.
I'm at week 16 since my surgery, and it's hard to believe four months have gone by. A lot has happened, yet the time frame seems shorter. Our lives have been in such chaos for so many months that I think the whole last year just seems like a blur. Somewhat unproductive, a little depressing and frustrating, but mostly exhausting. Right now we're in a place of calmness, and it's just very odd. Unfortunately I don't think it will stay that way very long, but hopefully it will be replaced with more positive events than negative.
If I'm being truthful, my health has actually declined these last several weeks. Before going to Iowa I was noticing some real improvements with pain levels, but I've now been going backwards for about a month. At first I thought maybe it was all of the traveling, sitting, uncomfortable hotel beds, etc. But we've now been home for over two weeks and I'm still not back to where I was.
I'm not going to worry yet. I've been really focused on catching up at work and putting in very long hours, and now that I feel I'm at a reasonable point there I can start focusing on my personal life. I need to stop and really study what I'm doing now vs. what I was doing a month ago. What I'm eating, drinking; what vitamins I'm taking, what activities I'm doing, etc. I also have to factor in weather. Weather kills me, especially when there are drastic swings, which is mostly what these last few weeks have been. Hopefully most of my problems lie there, but I don't think that is the whole issue. I just need time to stop and analyze, and luckily I now have that time.
I am on week three of physical therapy, and I think it's going well. They have a huge variety of weight/motion machines, that work various parts of my body. I'm doing better than expected (per their comments). I go twice a week, and starting this week one of therapists began microalignment therapy. With only light touches and some light pulling of my legs, she was able to improve my pain levels. It was really odd, as I could feel things shifting in my body, which she said were basically toxins, scar tissue, things out of alignment, etc. She worked my legs, back and mid-body, and said that things are pretty messed up throughout my whole body. Not a shock considering everything I've been through; I've always said that after the surgery I would need almost a complete body re-build. Nothing can be fixed in a day, but can be improved with several sessions. I guess once something is "fixed" it doesn't revert back, at least not in the short term. She told me I would probably not feel well for the next day or two, and she was right...but now it's been three days and I actually feel pretty good. I will now be meeting with her once a week for this treatment, and I look forward to seeing what else she can do. I put it in the same category as acupuncture; it's not something I would normally believe in, but having experienced it I can say that it definitely works.
I will be meeting with my Baltimore surgeon in May, which will hopefully be my last visit for at least a few months. Instead of driving I think I'll do a fly in/fly out thing instead. I also need to reschedule an appointment with my primary care physician and have blood work completed; I need to see where key levels are at. I was to go in March but had to cancel twice. Now I'm sort of avoiding, as I want to see her when I'm feeling decent. And maybe I'm a bit afraid; if the levels of my ANA and platelets are the same, then I still have something wrong with me. I have to stop procrastinating.
Happy Easter to all, and hopefully next week my update will reflect more improvement.
I'm at week 16 since my surgery, and it's hard to believe four months have gone by. A lot has happened, yet the time frame seems shorter. Our lives have been in such chaos for so many months that I think the whole last year just seems like a blur. Somewhat unproductive, a little depressing and frustrating, but mostly exhausting. Right now we're in a place of calmness, and it's just very odd. Unfortunately I don't think it will stay that way very long, but hopefully it will be replaced with more positive events than negative.
If I'm being truthful, my health has actually declined these last several weeks. Before going to Iowa I was noticing some real improvements with pain levels, but I've now been going backwards for about a month. At first I thought maybe it was all of the traveling, sitting, uncomfortable hotel beds, etc. But we've now been home for over two weeks and I'm still not back to where I was.
I'm not going to worry yet. I've been really focused on catching up at work and putting in very long hours, and now that I feel I'm at a reasonable point there I can start focusing on my personal life. I need to stop and really study what I'm doing now vs. what I was doing a month ago. What I'm eating, drinking; what vitamins I'm taking, what activities I'm doing, etc. I also have to factor in weather. Weather kills me, especially when there are drastic swings, which is mostly what these last few weeks have been. Hopefully most of my problems lie there, but I don't think that is the whole issue. I just need time to stop and analyze, and luckily I now have that time.
I am on week three of physical therapy, and I think it's going well. They have a huge variety of weight/motion machines, that work various parts of my body. I'm doing better than expected (per their comments). I go twice a week, and starting this week one of therapists began microalignment therapy. With only light touches and some light pulling of my legs, she was able to improve my pain levels. It was really odd, as I could feel things shifting in my body, which she said were basically toxins, scar tissue, things out of alignment, etc. She worked my legs, back and mid-body, and said that things are pretty messed up throughout my whole body. Not a shock considering everything I've been through; I've always said that after the surgery I would need almost a complete body re-build. Nothing can be fixed in a day, but can be improved with several sessions. I guess once something is "fixed" it doesn't revert back, at least not in the short term. She told me I would probably not feel well for the next day or two, and she was right...but now it's been three days and I actually feel pretty good. I will now be meeting with her once a week for this treatment, and I look forward to seeing what else she can do. I put it in the same category as acupuncture; it's not something I would normally believe in, but having experienced it I can say that it definitely works.
I will be meeting with my Baltimore surgeon in May, which will hopefully be my last visit for at least a few months. Instead of driving I think I'll do a fly in/fly out thing instead. I also need to reschedule an appointment with my primary care physician and have blood work completed; I need to see where key levels are at. I was to go in March but had to cancel twice. Now I'm sort of avoiding, as I want to see her when I'm feeling decent. And maybe I'm a bit afraid; if the levels of my ANA and platelets are the same, then I still have something wrong with me. I have to stop procrastinating.
Happy Easter to all, and hopefully next week my update will reflect more improvement.
Sunday, March 29, 2009
Week 15
First, thanks to all of you for your prayers, emails, cards, donations, gifts, etc. in regards to Brad's mom. Everything went very smoothly, and Brad is doing as well as can be expected. He handled everything so well, and made every decision by asking himself "What would mom want?" Right now there is more relief that Carolyn is finally at peace; hopefully with her husband, able to walk and see, and greeting all of those who went before her and looking over all of us she left behind. She suffered greatly in her final days, and none of us wanted that. We are grateful for all who attended the visitation and funeral, and I want to thank my Grimm family for all that they did - including sending a family "representative" - and for their wonderful words and support. I did finally meet Brad's brother for the first time, and my niece and nephew...who are 3-1/2 year old twins and absolutely adorable. I also had the opportunity to meet additional members of Brad's family, and finally went to the tavern his parents owned back in the 80's for the first time.
The last few weeks have been anything but normal. It's now been 15 weeks since my surgery, and the big question I'm asked after "How is Brad doing?" is how am I doing. With all of the driving, flying, hotel stays, pulling/lifting luggage and physical activity, I held up pretty well. If this had all happened before my surgery in December, I wouldn't have lasted a day. While I was sore, stiff and ready to go home near the end, I survived ok. I'm still sore and worse off than I was before all of this, but I've had much worse days. I was happy with my abilities these last couple of weeks.
I had to postpone my physical therapy by two weeks, so I had my first session last Friday. Though I was there an hour, it was mostly just an assessment, discussion of what I would like to accomplish, and an introduction to the staff. There are only a few individuals there, but they are seasoned professionals. The place I went to back in 2005 was mostly filled with students-in-training, and that was a mess. Though this place does not have before/after work hours, these people know what they are doing and the facilities are great. It sounds like I will mostly be working with the owner, and I'm looking forward to really getting into things.
This has been a most unusual year and month. I have follow-up appointments with my hand surgeon and spine surgeon, but plan on pushing them back a few weeks given what has transpired. I would like a chance to see how I handle PT before I have follow-up appointments, especially with my spine surgeon. Driving to Maryland and back is time consuming and costs money, and I want to make sure I can get the most benefit from the trip as possible. I also need to reschedule my appointment with my primary care physician, as I need to see where my counts are at. I've been feeling very tired lately (more than usual and beyond my control), and I'm wondering if my thyroid is low.
So what's in store for us now? I think the biggest thing is just trying to get back into a normal life. We're both behind in our jobs, and Brad has a bit of catching up to do in his classes. We need to get back into a regular schedule; I need to work on getting healthier and feeling better, and we'd like to start some home remodeling projects that have been on our mind for some time. We need to save some money; the last few months have been expensive. We'd like to go on some mini-vacations over the summer, including going to Cape Cod to see my brother as he is doing lighting design for several theatre productions there over the summer. I think overall we just hope for some reasonably peaceful months ahead. Just a little break from everything, time to mentally adjust to all of the changes, and most importantly...quality time with each other and those we care most about.
The last few weeks have been anything but normal. It's now been 15 weeks since my surgery, and the big question I'm asked after "How is Brad doing?" is how am I doing. With all of the driving, flying, hotel stays, pulling/lifting luggage and physical activity, I held up pretty well. If this had all happened before my surgery in December, I wouldn't have lasted a day. While I was sore, stiff and ready to go home near the end, I survived ok. I'm still sore and worse off than I was before all of this, but I've had much worse days. I was happy with my abilities these last couple of weeks.
I had to postpone my physical therapy by two weeks, so I had my first session last Friday. Though I was there an hour, it was mostly just an assessment, discussion of what I would like to accomplish, and an introduction to the staff. There are only a few individuals there, but they are seasoned professionals. The place I went to back in 2005 was mostly filled with students-in-training, and that was a mess. Though this place does not have before/after work hours, these people know what they are doing and the facilities are great. It sounds like I will mostly be working with the owner, and I'm looking forward to really getting into things.
This has been a most unusual year and month. I have follow-up appointments with my hand surgeon and spine surgeon, but plan on pushing them back a few weeks given what has transpired. I would like a chance to see how I handle PT before I have follow-up appointments, especially with my spine surgeon. Driving to Maryland and back is time consuming and costs money, and I want to make sure I can get the most benefit from the trip as possible. I also need to reschedule my appointment with my primary care physician, as I need to see where my counts are at. I've been feeling very tired lately (more than usual and beyond my control), and I'm wondering if my thyroid is low.
So what's in store for us now? I think the biggest thing is just trying to get back into a normal life. We're both behind in our jobs, and Brad has a bit of catching up to do in his classes. We need to get back into a regular schedule; I need to work on getting healthier and feeling better, and we'd like to start some home remodeling projects that have been on our mind for some time. We need to save some money; the last few months have been expensive. We'd like to go on some mini-vacations over the summer, including going to Cape Cod to see my brother as he is doing lighting design for several theatre productions there over the summer. I think overall we just hope for some reasonably peaceful months ahead. Just a little break from everything, time to mentally adjust to all of the changes, and most importantly...quality time with each other and those we care most about.
Thursday, March 12, 2009
Week 13
This one will be brief. I noticed a big change last week in regards to pain levels dropping drastically. This week has been fairly stable. I notice more pain when there are drastic weather changes (which there have been several), but still a positive difference. I'm taking about 1/4 to 1/3 of the medications I was taking two weeks ago, so to me that's a telltale sign.
Brad and I are leaving for Iowa to see his mom after work today. We'll be spending the night in La Salle/Peru, IL, and then should be able to be in Adair around noon-1pm on Friday. The plan is that we will head home on Sunday, unless it looks like Brad should stay. In that case I'll fly back home Sunday, as I unfortunately need to be at work Monday unless circumstances are very critical. I'm glad to be able to go with Brad and to see my mother-in-law, but it will also be a big test in terms of how I physically handle the travel. I think I'll do fine, and am grateful that I have had a relatively quick recovery (compared to other fusion patients), so I will not complain. My main concern is for Brad and his mom, and trying to do anything I can to provide support.
I will try to post info on how Brad's mom is doing from the road depending on time/connectivity availability.
Brad and I are leaving for Iowa to see his mom after work today. We'll be spending the night in La Salle/Peru, IL, and then should be able to be in Adair around noon-1pm on Friday. The plan is that we will head home on Sunday, unless it looks like Brad should stay. In that case I'll fly back home Sunday, as I unfortunately need to be at work Monday unless circumstances are very critical. I'm glad to be able to go with Brad and to see my mother-in-law, but it will also be a big test in terms of how I physically handle the travel. I think I'll do fine, and am grateful that I have had a relatively quick recovery (compared to other fusion patients), so I will not complain. My main concern is for Brad and his mom, and trying to do anything I can to provide support.
I will try to post info on how Brad's mom is doing from the road depending on time/connectivity availability.
Thursday, March 5, 2009
Week 12
First, a quick update on Brad's mom. While she seems to have good days and bad, her memory and concentration seems to be going. She is very tired, but not getting much sleep. She says she still feels good, but it's harder to have a conversation with her. Brad's sister is doing a great job keeping in touch with hospice to monitor her condition, and Brad will travel to be with her when it appears the end is near; I'm hoping I will be able to go along as well.
In terms of my condition, I made some progress this week. I met, for the first time, the chief medical officer at the clinic my dad works at. He is a hand surgeon, and offered to see me given the amount of pain I've been suffering with over the last month and a half with in my hands and arms. This visit was of special importance, as the surgeon has offered advice and support to me through my father over the last several years, so it was a pleasure to finally meet him in person. It turns out he suffered from an "undiagnosable" disease in his 20's when he was starting med school, and while he eventually was diagnosed he told me he had a special place in his heart for me as he knows what I've been going through. It's the first person I've met that could relate to me, and while I would never wish for anyone to go through what I've been through, it created an instant understanding and bond.
They did x-rays of my hands and wrists, and to my amazement there was no bone damage. Considering there is joint degeneration in my knees and ankles, I was happily surprised. The doctor did a quick examination and determined that I was probably suffering from carpal tunnel. I was diagnosed with this in 1998; mild in my left hand, moderate in my right. I had a few injections, but the last one was back in 2003. I really hadn't suffered from any pain since that time, but with all of the time I spent glued to my laptop in December and January it likely pushed me over the edge. I was given an injection in each hand along with splints. While my fingers are still a bit numb, the pain is 98% gone. I will follow up with the surgeon at the end of the month. If the pain has returned then he will recommend surgery, which is really a minor procedure compared to everything else I've been through. If I'm still doing well and not experiencing pain, then we'll hold off on the surgery until the symptoms flare up again.
The hand surgeon was also kind enough to recommend two other items. First, he suggested that I approach my primary care physician regarding thyroid medicine. While my numbers have always been on the "normal" side, he said with everything I've been through my number should ideally be on the high side of normal. Last time it was checked it was on the lower-to-mid side. He thought medication might help make me feel a bit better. He also gave me the name of a physical therapist who takes unusual cases and provides some unusual treatments such as underwater treadmill therapy. Considering the enormous toll my condition has taken on my body in three years, I'm very excited about this opportunity and hope to be able to schedule an appointment soon. I have clearance to begin therapy for my back, but I'm actually more concerned in rebuilding my legs, which I think have been the most effected from all of this.
I'm seeing my primary care physician next Friday; I'd like to have blood work completed again to see where my numbers are. Also, since the IVC filter was removed, I've been noticing that when I come home from work my ankles are very swollen. Usually 30 minutes with my feet up in the lounge chair solves that problem, but obviously want to make sure there is no blood clot or other serious issue popping up.
With my hand/arm pain now gone, I've drastically reduced my medications this week. I'm mostly taking just normal Aleve for pain. My low back has been aching a little bit the last two days, but it's minor. I've been waking up in the morning with dizziness and some morning sickness over the last couple of weeks, but I went through a similar thing when I was getting treated for Lyme back in 1992. It makes it difficult to want to get out of bed and start the day, but I'm managing. And for the record, no, not pregnant! I suspect I'm just dealing with a lot of changes in my system. We'll see what the blood work shows.
So that is where I stand now. I'm hoping to get caught up on some correspondence over the weekend, as I had really stopped cold-turkey with emails and calls. As always, I use what little physical capabilities I have towards my job, and everything else suffers. Have to pay the bills, and given the economy I feel grateful to have a job with relative stability. I certainly have to do everything I can to hold on to that, though I hate that I give up so much on a personal level. Hopefully I will soon be able to find a better balance in life.
This has been a long post, but this should give you all a clear picture of where I'm at now. I'll still continue to post weekly, though I'm looking forward to the day where I can say "I'm done with this chapter of my life, and here is my last blog entry." That would certainly be a day of celebration for me. Thank you all who sent Brad and I anniversary cards this week; we enjoyed them all. Given everything going on we did not do much to celebrate other than a nice dinner on Saturday (Brad had class on Monday), but we made a promise to go away somewhere for a vacation when things have settled a few months from now.
I hope all of you out there are doing well, are happy and healthy, and enjoying life to the fullest.
In terms of my condition, I made some progress this week. I met, for the first time, the chief medical officer at the clinic my dad works at. He is a hand surgeon, and offered to see me given the amount of pain I've been suffering with over the last month and a half with in my hands and arms. This visit was of special importance, as the surgeon has offered advice and support to me through my father over the last several years, so it was a pleasure to finally meet him in person. It turns out he suffered from an "undiagnosable" disease in his 20's when he was starting med school, and while he eventually was diagnosed he told me he had a special place in his heart for me as he knows what I've been going through. It's the first person I've met that could relate to me, and while I would never wish for anyone to go through what I've been through, it created an instant understanding and bond.
They did x-rays of my hands and wrists, and to my amazement there was no bone damage. Considering there is joint degeneration in my knees and ankles, I was happily surprised. The doctor did a quick examination and determined that I was probably suffering from carpal tunnel. I was diagnosed with this in 1998; mild in my left hand, moderate in my right. I had a few injections, but the last one was back in 2003. I really hadn't suffered from any pain since that time, but with all of the time I spent glued to my laptop in December and January it likely pushed me over the edge. I was given an injection in each hand along with splints. While my fingers are still a bit numb, the pain is 98% gone. I will follow up with the surgeon at the end of the month. If the pain has returned then he will recommend surgery, which is really a minor procedure compared to everything else I've been through. If I'm still doing well and not experiencing pain, then we'll hold off on the surgery until the symptoms flare up again.
The hand surgeon was also kind enough to recommend two other items. First, he suggested that I approach my primary care physician regarding thyroid medicine. While my numbers have always been on the "normal" side, he said with everything I've been through my number should ideally be on the high side of normal. Last time it was checked it was on the lower-to-mid side. He thought medication might help make me feel a bit better. He also gave me the name of a physical therapist who takes unusual cases and provides some unusual treatments such as underwater treadmill therapy. Considering the enormous toll my condition has taken on my body in three years, I'm very excited about this opportunity and hope to be able to schedule an appointment soon. I have clearance to begin therapy for my back, but I'm actually more concerned in rebuilding my legs, which I think have been the most effected from all of this.
I'm seeing my primary care physician next Friday; I'd like to have blood work completed again to see where my numbers are. Also, since the IVC filter was removed, I've been noticing that when I come home from work my ankles are very swollen. Usually 30 minutes with my feet up in the lounge chair solves that problem, but obviously want to make sure there is no blood clot or other serious issue popping up.
With my hand/arm pain now gone, I've drastically reduced my medications this week. I'm mostly taking just normal Aleve for pain. My low back has been aching a little bit the last two days, but it's minor. I've been waking up in the morning with dizziness and some morning sickness over the last couple of weeks, but I went through a similar thing when I was getting treated for Lyme back in 1992. It makes it difficult to want to get out of bed and start the day, but I'm managing. And for the record, no, not pregnant! I suspect I'm just dealing with a lot of changes in my system. We'll see what the blood work shows.
So that is where I stand now. I'm hoping to get caught up on some correspondence over the weekend, as I had really stopped cold-turkey with emails and calls. As always, I use what little physical capabilities I have towards my job, and everything else suffers. Have to pay the bills, and given the economy I feel grateful to have a job with relative stability. I certainly have to do everything I can to hold on to that, though I hate that I give up so much on a personal level. Hopefully I will soon be able to find a better balance in life.
This has been a long post, but this should give you all a clear picture of where I'm at now. I'll still continue to post weekly, though I'm looking forward to the day where I can say "I'm done with this chapter of my life, and here is my last blog entry." That would certainly be a day of celebration for me. Thank you all who sent Brad and I anniversary cards this week; we enjoyed them all. Given everything going on we did not do much to celebrate other than a nice dinner on Saturday (Brad had class on Monday), but we made a promise to go away somewhere for a vacation when things have settled a few months from now.
I hope all of you out there are doing well, are happy and healthy, and enjoying life to the fullest.
Saturday, February 28, 2009
Week 11 (almost 12)
Good news and bad news. I'll start with the bad first.
The Bad
I'm now certain that the arm/hand pain I've been really struggling with over the past month is unrelated to the metal issue. The pain continues to worsen, and it's making my life miserable. Basically both arms and hands feel like I have a thousand needles in them, my hands are constantly burning, and I've lost feeling in my fingers. Since I spend most of my day at a keyboard, you can imagine the difficulty there. Sleeping is almost impossible; I spend hours trying to find a comfortable position that reduces the pain to a level where I can actually fall asleep. How I position my neck, shoulders and wrists can effect the pain level. Last night was the first night I got 4-1/2 hours of solid sleep, but it took a lot of time, positioning and medications to get to that point. The last several nights I've not been able to sleep more than 20 minute increments; in terms of sleep, it's worse than before the surgery.
I have reason to believe that the disc I herniated in my neck back in 1992 - though it really hasn't given me problems since 1993/94 - is the cause. I'm going to start with seeing an upper extremities ortho surgeon who my dad has a good relationship with, as he offered to see me on Tuesday. If it's shoulder/arm/hand related, he can diagnose and treat. If not, then I have to make the decision which orthopedic spine surgeon to see. At this point I'm leaning towards the first spine surgeon, for a few reasons. One, he works at the clinic my dad works at so I can maybe get in a little quicker. Second, I'm hoping the treatment can be a cortisone injection; if it is, the pain mgmt physician at that same location is wonderful and I would trust him to do a good job. Though my most recent spine surgeon is my favorite, I feel my current situation would be too "average" for him, and I don't want to waste his time. He has a gift, and that's why he typically only takes difficult patients who need a rare/difficult surgery performed.
The Good
Though the upper extremity pain makes it difficult to think about anything else, I continue to notice positive changes in my back and legs. It's interesting, because it's almost like a transformation. I always felt like something was "eating away" at my bones and muscle. I'm not feeling that so much anymore. However, what I am feeling is almost like the "after-effect." My main leg complain is muscle pain, but it's different than before. In my mind, what I'm experiencing is something that could be taken care of with lots of physical therapy and time. My muscles are damaged, I've had to severely limit my activities over the last couple of years, and between the two my muscles need to be "rebuilt."
So in conclusion, while I feel I'm making some progress I'm still suffering a lot, just in a different way. It certainly would have been better had I not had this arm/hand thing pop up as I think I'd better be able to determine how things are progressing, but my health has not been, and will probably never be, an area where I'm "lucky" or even just normal. I think everyone has a certain part of their life where they struggle - mentally, professionally, relationships, health, etc. I've always been blessed with a wonderful family, a decent brain, a great husband and friends, good jobs...health is my area of struggle. And you know, the fact I have all of those other things going for me has made it possible for me to continue with a somewhat normal life despite the health stuff. I haven't given up yet, and certainly will not be giving up any time soon.
I hope everyone has/had a great weekend.
The Bad
I'm now certain that the arm/hand pain I've been really struggling with over the past month is unrelated to the metal issue. The pain continues to worsen, and it's making my life miserable. Basically both arms and hands feel like I have a thousand needles in them, my hands are constantly burning, and I've lost feeling in my fingers. Since I spend most of my day at a keyboard, you can imagine the difficulty there. Sleeping is almost impossible; I spend hours trying to find a comfortable position that reduces the pain to a level where I can actually fall asleep. How I position my neck, shoulders and wrists can effect the pain level. Last night was the first night I got 4-1/2 hours of solid sleep, but it took a lot of time, positioning and medications to get to that point. The last several nights I've not been able to sleep more than 20 minute increments; in terms of sleep, it's worse than before the surgery.
I have reason to believe that the disc I herniated in my neck back in 1992 - though it really hasn't given me problems since 1993/94 - is the cause. I'm going to start with seeing an upper extremities ortho surgeon who my dad has a good relationship with, as he offered to see me on Tuesday. If it's shoulder/arm/hand related, he can diagnose and treat. If not, then I have to make the decision which orthopedic spine surgeon to see. At this point I'm leaning towards the first spine surgeon, for a few reasons. One, he works at the clinic my dad works at so I can maybe get in a little quicker. Second, I'm hoping the treatment can be a cortisone injection; if it is, the pain mgmt physician at that same location is wonderful and I would trust him to do a good job. Though my most recent spine surgeon is my favorite, I feel my current situation would be too "average" for him, and I don't want to waste his time. He has a gift, and that's why he typically only takes difficult patients who need a rare/difficult surgery performed.
The Good
Though the upper extremity pain makes it difficult to think about anything else, I continue to notice positive changes in my back and legs. It's interesting, because it's almost like a transformation. I always felt like something was "eating away" at my bones and muscle. I'm not feeling that so much anymore. However, what I am feeling is almost like the "after-effect." My main leg complain is muscle pain, but it's different than before. In my mind, what I'm experiencing is something that could be taken care of with lots of physical therapy and time. My muscles are damaged, I've had to severely limit my activities over the last couple of years, and between the two my muscles need to be "rebuilt."
So in conclusion, while I feel I'm making some progress I'm still suffering a lot, just in a different way. It certainly would have been better had I not had this arm/hand thing pop up as I think I'd better be able to determine how things are progressing, but my health has not been, and will probably never be, an area where I'm "lucky" or even just normal. I think everyone has a certain part of their life where they struggle - mentally, professionally, relationships, health, etc. I've always been blessed with a wonderful family, a decent brain, a great husband and friends, good jobs...health is my area of struggle. And you know, the fact I have all of those other things going for me has made it possible for me to continue with a somewhat normal life despite the health stuff. I haven't given up yet, and certainly will not be giving up any time soon.
I hope everyone has/had a great weekend.
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