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.
Tuesday, June 30, 2009
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.
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