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.
Monday, August 10, 2009
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.
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