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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Week 10 - And Six Days After

It's now been six days since I had the IVC filter removed. The pain levels continue to inch down ever so slightly, and I feel little changes each day. It's like I told my case manager - this week the pain is bad but "tolerable", where as the last few weeks I would have welcomed getting hit by a bus, put in a coma...anything where I wouldn't have to feel the pain anymore as I was going out of my mind. There is an improvement, I just have a long way to go.

Currently all of my energy is going into my job, and by the time I get home at night I'm beat. While my hand pain is much better, it's still bad enough where I'm avoiding the computer when I get home. I'll know I'm making progress when I'm back to doing my evening emails, Facebook and blogs again on a regular basis, not to mention to occasional game of mahjong. When I don't even want to play a simple computer game you know I'm not well!

I'm on minimal pain medications that help me get through the day, but I'm still having trouble sleeping. It takes me forever to get comfortable, and sometimes "comfortable" is impossible to achieve. At least this past week I've been getting in at least 5 hours of sleep a night, so I'm grateful. I'm also grateful for our DirectTV, though the receiver has been freezing up a lot lately. When you can't hold a book to read, hold a phone to talk to your family/friends or type on a computer, at least the TV is there. Thank goodness for "The Office" and "Arrested Development"; they definitely help keep my mind off the pain. And though I've probably seen each episode 10+ times for this season, I'm also grateful for "Top Chef" as I just love that show.

I had orders last week to start physical therapy; I have to start looking into that. I have a follow-up to see my spine surgeon in April, and I know he'll want a status report at that time. Which reminds me...I forgot that I was to make an appointment for next week with the vascular surgeon as a follow-up to my procedure last week. Oops, completely forgot. I'm going to "blame" Brad, as they told me this information before I left the hospital...when I was heavily medicated, exhausted, in a lot of pain and really not paying attention! Given the distance, I'm guessing that all I really need to do is just do a call/check-in and let them know how I'm doing and that the site is healing well. I basically just have a small, circular scab on my collarbone, along with some light bruising from a few injections and pressure put on the area during the procedure. It looks like what you'd find after you have an IV taken out, but on a slightly larger scale. I think it's really minimal considering how big the IVC filter was. I don't know what they did to me during my spine surgery, but they did something around my neck area that looked much, much worse in terms of bruising and size!

So that's where I'm at. I'm hoping that a week from now I will be able to report continuous improvement. Given what I've seen over the last six days, I'm very optimistic. Again, this will take time. Tomorrow is a working Friday (we get every other Friday off where I work, as it's a 9/80 work schedule), so one more day and then it's the weekend. I'm looking forward to having some time at home, and will hopefully be feeling good enough to do some much needed cleaning and errands. As always, thank you to everyone for your emails and Facebook messages; I feel so disconnected from people lately, so it really brightens my day to read them.

Week 10

Made it back to Ohio on Saturday around 7pm. Brad drove the whole trip, which I was grateful for. Was - and still am - feeling very exhausted from the procedure and just everything I have been through the last several weeks. We attempted to stop in Pittsburgh for a nice early Valentine's Day dinner, with no luck; every place was swamped. In the end we settled for picking up some Bob Evans down the street and eating at home.

I think it will take several weeks before I know the true outcome of these procedures I've had. I feel exhausted, yet the pain appears to be letting up a bit. I think my body chemistry is off and has a lot of "re-adjusting" to do. I feel overwhelmingly exhausted, weak and sick; try as I might, I'm having a hard time feeling "normal." I slept a lot over the weekend, and continue to feel tired. I'd love nothing more than to spend the week at home recuperating, but there is work to be done. I can only hope that once I get to work I'll find some energy to be productive, and that the days will go by quickly. I also must force myself to drink lots and lots of water (I'm horrible at that), and to eat as healthy as I can.

I doubt I'll post every day, but will definitely post every couple of days so you know if I'm seeing any improvement or not.

Filter Removal

Arrived at the hospital at 6am and checked in. After going through the whole process, it was realized that lab messed up and just cross-typed my blood platelets yesterday and didn't do an actual count. So, I was wheeled into the Radiology area where the procedure was to be done, and ended up being delayed about two hours. My platelet count was 16 (hey, that was up from last Friday!), so they did the platelet transfusion which took about 25 minutes. In order to keep on schedule they had a few patients go in before me, so by the time I was wheeled in I was definitely ready to go.

The procedure at minimum was to take 45 minutes, but it went really smoothly and took closer to 20-25 per the staff. I was awake the whole time, though they gave me drugs on several attempts to put me in more of a sleep-yet-still-awake mode. They went in through my neck so my whole head was covered and I couldn't see anything. The surgeon spoke with me the whole time, telling me what he was doing, and before I knew it the thing was out. Afterwards the staff showed it to me, and it was pretty cool. A lot more connected pieces/parts than I thought it was back when they put it in, but was glad to see it out.

I was immediately given a chest xray and things looked clear. I was coughing up blood for about 20 minutes which freaked me out a bit, but was told it was normal. Sat in the recovery area for about 2 hours, got a turkey sandwich and a percocet for the arm/hand pain I was having. Got the discharge instructions and was back at the hotel by 1pm.

I basically slept most of the afternoon, though I'm in a lot of pain/discomfort. Brad was kind enough to go out and get dinner, so I thought it would be a good time to do a quick blog. I have a feeling I'll have a rough night, but have approval to drive back home tomorrow. I'm looking forward to it; things are just more comfortable there.

So this is now the time for "the big wait". I am currently nickel-free; what will happen now? If I get better, I'll probably be a case study. If I don't, then I have a lot of thinking to do as to where to go from here. No change in pain yet, but it hasn't even been 12 hours. I want to drink lots fluids, eat healthy, etc. My body has a lot going on and it's going to take some time for everything to be where it's suppose to be.

I hope everyone has a great weekend and Valentine's Day. I'll post when we're back in Ohio.

Week 9 - Day Before Procedure

Hello from Baltimore. Brad and I left immediately for Maryland after work last night, which was interesting. High winds and rain through central PA; saw lots of transformers blow and at one point there was a tree that had fallen on the interstate, but no damage to us or anyone as far as we could tell. Made it to Cockeysville about midnight and fell asleep pretty instantly. It was a very long day. A long week, actually, and I'm pretty exhausted.

Today we went to the hospital and saw my spine surgeon first. Dr. McAfee is just the best, I must say. They did x-rays and everything looked perfect. Perfect bone growth, everything is in place. Based on how the x-rays looked and how I've been working and the fact I drove from Ohio to Maryland, he stated that I looked more like a patient who had surgery 4-6 months ago instead of 9 weeks ago. He couldn't believe I could drive that long of a distance, and immediately recorded it in his recorder where he gives his patient notes. I now will start therapy in Ohio to help rebuild my muscle strength, and will do a follow-up in two months. I have no restrictions, including no more medication restrictions.

The whole ortho staff was so friendly and warm to us. My case manager made sure that I was taken care of for the vascular procedure tomorrow, making sure that the correct lab work was going to be done, etc. She told me to call her and let her know how things went; they are all anxious to hear how it goes. It's really a great office.

I had my bloodwork done, but no call from the vascular office giving me the count or telling me to come in today. My guess is they will do a quick count in the morning and then do a transfusion. The surgeon wants my platelets at 50k, and I'd be amazed if they were at that level on their own. I could actually see the filter in my spine x-ray shot, and it's a lot bigger than I thought it was. I kept thinking it was some little thing, but in terms of length it's the size of a toothpick with three long prong-like arms that join together at the end. Now it makes a bit more sense why I might be reacting to it so badly.

WhileI was able to drive last night, my hands feel like they have a thousand pins in them today and my legs are killing me. We went to another Marriott hotel today (they have a promotion and to get points you have to stay at a minimum two locations so we're just playing the "game") around 2pm. We're staying in a Fairfield Inn that is across the road from the Residence Inn we stayed in back in December. We're in a mini-suite and it's an amazing hotel. It's so modern I feel like we're in a Westin Hotel. Everything is so modern and state-of-the-art. The beds are also new; we saw the delivery truck when we were here in December and were jealous, as the Residence Inn beds were horrible. This will be a good place to stay for a couple of days.

Tomorrow I check into the hospital at 6am, and then I think the procedure is scheduled for somewhere between 8-9am. I don't know what's involved, just that it will be longer than when they put it in, which took about 20 minutes. I'm guessing I could be at the hospital until at least 2pm, as last time they kept me several hours to make sure the drugs wore off, that I wasn't bleeding, etc. We'll then head back to the hotel and I'll rest for the day. Saturday the plan is to head home; hopefully weather will cooperate.

Well I can't type any more as the pain is too much, so I'm off for now. Thank you all again for your support; I know I'll be ok, I'm in great hands. I honestly wish I could go here for all of my medical care, it's just a wonderful environment and unlike any place I've ever been.

Week 9 - Finally!

First, my apologies. I wrote this Monday but for some reason it didn't post; so this is really from Monday, though I'm posting on Tuesday. - CLF

To my shock there are people still reading this, so I better keep this thing up to date!

I have good news today. I finally got a hold of the vascular surgeon this afternoon, and he confirmed we will take care of my low platelet count there. He also confirmed I did not need to follow the treatment path the hematologist here recommended, thank goodness. I had already canceled it this morning, so that was a big relief there. Basically I will go in on Thursday, have the hospital lab test my count, and if it's lower than 50,000 they will arrange for a platelet transfusion either Thursday afternoon or Friday morning before the procedure.

I was originally going to drive to Maryland on Thursday morning, but will now likely drive there after work on Wednesday. I want to get my blood tested first thing on Thursday so there is time for the surgeon to decide how to handle my platelet count. In the early afternoon I meet with the spine surgeon, at which time I'll have x-rays done to see how the fusion has progressed. If things go well there, I could finally be cleared to start taking anti-inflammatory medications again. I don't anticipate any negatives on the film, as my back really feels great these days. I have sore moments, but it's more muscle-related than anything.

Another positive thing is that Brad might be able to go with me on this trip. His mom went off dialysis on January 30, but so far she is not showing signs of decline. We were thinking my mom would go with me for this, but if Brad's mom is still doing well he will join me. I love my mom and she's a wonderful caretaker and I have a lot of fun with her, but Brad and I have been through so many procedures together that we just "know the drill." It's sad, but we do! Plus I would likely be limited in how much I can drive, and I know my mom was dreading having to drive my car in the crazy Baltimore traffic!

It's amazing how a small, unknown hospital in a suburb of Maryland - and down the street from Johns Hopkins - has dealt so positively with my situation in complete contrast to the two big Cleveland health systems. I know that come Thursday and Friday that I will be in good hands.

I'll say it again - I appreciate all of the love, support and prayers from everyone. I certainly was not expecting how things played out these last several weeks, and I've needed every ounce of help I could get. I truly appreciate it.

End of Week 8

Today I can type a little, so I'm taking advantage of it. It was a rough Thursday/Friday/Saturday, but here is the update.

I have still not been able to connect with my vascular surgeon. All I know is that my ortho case manager told me he had a plan to get me admitted into the hospital, and made it sound like I could bypass any crazy treatment the Ohio doctors wanted to put me through. But, I still have no confirmation on this.

On Friday I saw the hematologist and Brad was great enough to go along. The doc wanted to put me on a multi-week NPlate treatment, but when I told him I wanted to have my surgery on the 13th he then recommended Rituxan. Actually, he wanted to do another one of his crazy steroid treatments, but I told him my ortho office was against it due to the fusion.

The doctor and his nurse manager were unwilling to give us much information, including side effects on the Rituxan. Since we were there though, we had to schedule a time for the one-time treatment. I was scheduled for 10:30 on Monday (tomorrow), and was told it would take up to 6 hours to administer through an IV.

Rituxan is usually used for lymphoma patients. The hematologist wanted to try it, and told me that if he saw my platelet count raise at all that he'd approve me for surgery. However, despite the treatment it would not raise my count high enough and I'd have to have a platelet transfusion prior to the surgery on Friday. My platelet count - though I found out that evening - was a personal low of 9 on Friday. This was down from 32 on Tuesday and 25 on Monday. In other words, my platelet count is all over the place. What is so strange is that I have absolutely no symptoms. Even when they did the three blood tests this week there was no mass bleeding - or actually any real bleeding - afterwards. There was no bruising. I had a papercut, and was fine. It just doesn't make sense.

The hematologist and his nurse manager, in their own subtle way, made it clear that they think my issue is not related to nickle. They think it is ITP, which, other than the low platelet count, I do not have a single symptom of. They made it clear that they figured they would be seeing me again soon, after which we could discuss a long term treatment plan. I certainly hope in the end it is not ITP, but if it is, this is the last place on earth I'd go to.

After a lot of research, what I found out about Rituxan is that it has a lot of horrible side effects that can not only occur immediately during/after the administration, but up to 12 months after. They are also long-term and deadly. On a reputable site it said to check with your doctor before taking it if you have a low platelet count (which I do) and to check with your surgeon if you are to have a surgery (which I am).

This being said, I have come to the same conclusion I had in November. This hematologist is crazy, treating me like a cancer patient, and I think is trying to kill me. I am therefore - with the strong blessing of my husband and parents - canceling and refusing the treatment. We understand this may delay the removal of the filter, but all of us agree that these treatment options are unacceptable.

Tomorrow I will once again try and try to reach the vascular surgeon. I need to know his plan. I'm hoping he truly does have a way around this whole Ohio mess and I can just have whatever I need done in Maryland.

So that is what is going on. Saturday was a horrible day; so much so that I almost went to the ER on several occasions. I don't think I have ever been so scared. The only reason I didn't go was because it was a Saturday and I figured it would be busy and I would have to sit around and wait forever. Plus, I was so bad I didn't even know how I would make it there. If I had woken up today in the same pain I was going to go in the morning, at least for some pain medication. As bad as the pain was before the surgery, this is even worse and scarier. The medicines I take provide little relief, and it's really terrifying. This Friday - which will hopefully happen - cannot come soon enough.

Today, for no particular reason, is a better day. I am still in a lot of pain, but my brain is able to tolerate it better. I'm still about a "9", but it's better than the "50+" I was yesterday on the pain scale range.

I'm finding it difficult to type any more at this point, so I'll end it here. Hopefully my next post will be giving the all-clear to go to Maryland have this filter removed.

Week 8 (Continued Part 2)

My ortho case manager called this morning, and she finally connected with my vascular surgeon and explained the situation to him. He is going to call me directly today, but it sounds like he has an idea to somehow admit me and get the filter out without going through the typical approval process.

I can't wait to hear what he has to say. I'm all for creative solutions!

Week 8 (continued)

In a very strange deja vu, I'm back where I was last November. Almost a week away from surgery, a low platelet count, being sent to a hematologist in the Cleveland Clinic system. I tried to get out of the system, and was sent back in today by my non-Cleveland Clinic doctor who "thought it would be best".

I have an appt this Friday with the hematologist that tortured me and acted like a loon when I last saw him. I'm not optimistic. I was hoping for a platelet transfusion but it sounds like, per my primary care, that the hematologist would rather do some IV treatment that would take several weeks to build my platelets. Obviously that would void my Feb. 13 date to remove the metal that is likely (at least I'm hoping) causing all of this.

I'm defeated today. This was not part of the plan. It's tough to be back where you started, go through it all again. Except it's a little worse because I'm still very limited on what I can take for medicines; nothing that helps with inflammation or the pain. I'm exhausted, and between the torturing pain, lack of sleep and having to work a full time schedule it is just too much. To add IV "treatments" to my schedule, and wanting to be there for Brad given everything going on with his mom...I don't know how I will physically and mentally survive if this is extended another month.

I hate to write such a "down" blog, but that's where I'm at today and that's the situation. I don't think anyone is reading this anymore, but for those who are and who tolerated my ramblings today, I appreciate it. I just needed to vent, and for me writing is the best way to do so. It has just not been a good day.

Week 8

It's been long enough where I'm switching to weeks. This is week 8.

Currently I'm in bad shape. The pain I was experiencing in my hips, legs and feet has now also spread into my arms, hands and every finger. Horrible aching, pins/needles, numbness, etc. Medicine isn't helping and it's pretty overwhelming. It's actually worse than before the surgery, and never lets up.

I'm going into work almost every day now for at least five hour periods, but it's tough and I'm afraid will soon be made impossible if symptoms continue to worsen. I'm even struggling to type, hence my lack of posts lately or any computer-related correspondence/email. I'm trying to get the IVC filter removed sooner than the scheduled date of Feb. 13, and will hopefully know tomorrow whether that is possible.

Of course as I was writing this I got a call from the local hospital where I had blood work done today for the pre-op testing, and my platelet count is once again low - 25. Because I was through this before the previous surgery, I'm hoping this now doesn't delay the procedure beyond the 13th.

I'll end with good news - my back feels great, solid, not a single bad issue there. Now I just need to get the rest of my body feeling that way!

Days 37 thru 41

Sorry for the lack of posts lately, but I've had a miserable week. I'm working FT hours, part of those in the office, and it's been really rough. The musculoskeletal pain I had before my surgery is back and worse than ever, and I'm really suffering. I hate taking things like pain medication, but believe at this point I need something a lot stronger than what I have to get me through the next few weeks until I can get the IVC filter removed.

Based on my research, the filter is placed in an area where the blood goes from the heart to the legs, which I'm hoping explains why my leg pain is worse than it's ever been. I'm really just beside myself, as the pain is nothing short of torture and nothing provides any relief at this point. If I could just sleep away the days between now and Feb. 13 I would, but unfortunately I have to find the strength somewhere to get through this obstacle and not completely lose my mind. :-)

On a positive note, I did see a new primary care physician yesterday. I have to have pre-admission testing done before the filter removal, which means I could go through the same roadblock I did before my surgery - a low platelet count. I'm going to have the blood work done on Monday, so that will hopefully give me time to raise the count if needed without having to push the procedure back. I liked the PCP, though I'm sure I overwhelmed her with my history and situation. The nursing staff was unbelievably friendly, which made up for the fact that the office was older and smelled a bit like a nursing home. Of course the true test will be how I'm treated if there are problems with my pre-admission testing and how its handled. I'm hoping for the best.

Besides the horrible leg pain, my back is doing better. At first I was finding it really hard to spend more than a couple of hours in my chair at work without the back pain increasing, but yesterday I didn't have any problems. The biggest issue is my right hip. While I thought that issue had been cleared up, the driving and sitting at work has aggravated it again. At least with that I can put ice on it or sit in the recliner and after awhile it goes away. If only there was something I could do with the leg pain that would be that easy of a cure!

Before I go, on a side note Brad's mom was transferred from a Des Moines hospital to a nursing home in Anita this past Monday, which is only seven miles from Adair - her home town. She is continuing the dialysis treatments and responding well. Brad's sister and family were there for a visit this past week, and now his brother and family are there for two weeks. Brad's mom indicated that she wants to continue the dialysis next week; at this point things are just being determined week by week.

Day 36

Today I was to go into work for a part day but decided to stay at home and work instead. I was out of pain medication, and the pain was just too unbearable. I'm starting to get frustrated at this point, though I have to keep reminding myself that it's too early for that. I still need that filter removed, and until that happens I can't start coming to any conclusions.

I did finally get my medications yesterday afternoon, and it will take me a few doses to get back on track. My other big news is that I'm trying to get out of the of the Cleveland Clinic system, and think I found a local osteopathic/internal medicine physician who is with the other big giant around here - University Hospitals. I've heard wonderful things about them, and figured I would give them a try. I need pre-admission testing done before my filter removal, and could not bear to think about going back to my Cleveland Clinic primary care physician after what her and her team put me through in the past. I refuse to give them more money!

Tomorrow I'm planning on doing a part day at work, so I'm hopeful that will go well. I don't believe I should have snow to contend with this time, so hopefully my commute home won't mimic the one I had last Wednesday.

Days 32 - 35

It's been a tough few days, hence my lack of writing. I've been having difficulties getting prescriptions refilled, one in particular that helps the most with the pain. While it was called in on Thursday, the pharmacy put a hold on it stating they needed additional information from the physician because they are out of state. The pharmacy of course says it called the surgeon's office and left a message, but unfortunately this seems to be a habit with them over the last several months - blaming someone else. So for the last several days I've been suffering as I have minimal pain medication left, and have been trying to stretch it out until Monday. The leg pain is the worst, and most of the time unbearable. I'll be glad when I have my medications in hand again. I hate taking the darn things, but the pain is too severe at this point to function without it.

This all comes at a bad time, as I'm trying to put in a full time-plus schedule with work from home, and it's draining. So I'm trying to muddle through as best I can, trying to accomplish as much as I can while ignoring the total discomfort I'm in...or at least attempting to ignore the pain, as I don't believe I've been too successful lately.

On the plus side, I'm now able to drive a car on my own, and have been getting out more. Last night we went to Lowes and Home Depot to walk around. I didn't feel like it, but it's good for my healing back to make sure I keep a certain level of activity. Regarding my back, the pain is very minimal and I'm still shocked at how much mobility I have considering I had a fusion. All of my issues surround my legs at this point, and my right arm as my carpal tunnel pain has also come back full force, likely due to all of the time I'm spending on my laptop.

This afternoon I'm working away on my laptop again while listening to movies play in the background. We have free HBO and Cinemax this weekend, and there's been some good stuff on I've been wanting to see. Currently watching "The Darjeeling Limited." I'm 15 minutes into it, and so far I'm not impressed; hopefully it gets better from here!

Day 31 - First Day Back to Work

Today was a big step, as I physically went into to work for about six hours today. I woke up feeling great and was like a little kid at Christmas during my 40 minute drive in, as I was excited to be going back to work.

While the first few hours were fine, around "hour three" I started feeling soreness in my right hip and my low back. It hit me; I am not used to sitting in a normal chair for hours on end. Yes, I've sat in them for maybe an hour or so, but then after that I'm walking and then returning to my reclining chair or laying down. By "hour four" I knew that while my goal was to also come in Thursday, that I would be staying at home instead. I still have a bit more healing to do before I can handle the sitting component. I was still proud of myself for trying, and have no regrets. I really enjoyed being back, and know that it's only a matter of time before I'll be able to. In the meantime I was able to grab some paperwork to take home with me, and now I have a new workload in front of me to keep me busy.

The other downside about today was that we had snow. Another calculation I didn't factor in clearly. First, because I went to work late (1oam), I had to park on the roof of the parking garage, meaning my car was out in the elements. Oops. By the time I left around 4:15 I had to scrap snow off my car, but luckily the snow was light and there was no ice. If there had been, I might have had to call a co-worker for help. To add to my distress, I then spent 2-1/2 hours on the road getting home, putting my average speed at 18 mph (though it was really more like 1 mph for the majority of the trip).

So after spending over three hours in my car and over six hours at work, I'm sore but not broken. I'm guessing I'll be a little achy tomorrow. And while I probably should have picked Thursday to go in as there is no snow predicted, it is to be about zero degrees so at least I can stay inside. At this point I'm aiming for next Monday as my next part day at the office, so we'll see how it goes. In the meantime I have a lot of work I want to accomplish at home, and at least here I can usually find a comfortable spot even though I don't have the pleasant company of my co-workers surrounding me.

Days 28-30

Sorry, it's been getting harder to do daily posts. Brad was in Iowa over an extended weekend, during which time I wasn't feeling the greatest so I wasn't on the computer much. By Sunday I did feel decent enough to go out to an early birthday dinner for my dad, which I handled pretty easily. I hadn't ridden in a car for awhile, and found that the bumps that at one time really irritated my back produced no pain or discomfort so that was a positive.

This week I'm working FT from home, but tomorrow (Wednesday) and Thursday I am going to try to go in to work from 10am to 3pm to see how things go. I have permission to wear my comfy sweat pants and sweaters for a few weeks since I'm still swollen from the surgery and quite frankly, I've worn business clothes before too soon after a surgery and it can cause a great deal of pain. I'm excited to be back in the office, able to talk with people, and have some sort of normalcy back. I'm to the point where I'm really getting bummed being around the house all of the time by myself.

While the surgical pain has really gone away these last few days, the musculoskeletal pain in my legs and arms is back. Yes, the same kind of pain I had before the surgery, which I was hoping the surgery would cure. I'm not panicking, and I don't want anyone else to either. I still have that nickel IVC filter in me, which I'll have for another month. I'm working with my surgeon's office to come up with a plan of attack medication-wise (as that's all they can do for now) that will help me deal with the pain better. Last night I had a three-hour attack that was just horrible, and so bad that I contemplated going to the ER until I realized there was nothing they could do for me. After all, what exactly would I be diagnosed with or "cured" by? I'm guessing the blood transfusion I had during the surgery, combined with the drugs and anesthesia helped make that pain go away short term, but now my body has adjusted - it's been four weeks - and I'm back to where I was before. Well, almost. I would say that my spine is the best it's been in years, and that's going back long before I had any of the other surgeries. My spine health is currently in the "success" category.

So that's what's going on with me. Daily updates are getting harder, but I'll definitely continue to post updates. I continue to thank you all for your supportive messages and prayers. I've been slowly writing everyone back...I'll get caught up one of these days!

Days 25, 26 & 27

Sorry for the multi-day post. I've been putting in a lot of work hours on the computer at home, so that's really limited my free time. I'm basically now working full time...actually a lot more given all of the technical glitches I had to deal with this week. Brad left for Iowa on Thursday, which also adds just a little more responsibility on me regarding household stuff, so I just haven't had a chance to blog.

Nothing really new. My mom took me grocery shopping yesterday for about an hour. It felt great at first, and I found that initially I was able to walk at my old, normal pace. However, at the end we had to stand in a huge line and it about killed me, the leg pain was excruciating. I've been trying to cut back on pain medications a bit. The musculoskeletal pain I had before the surgery is also coming back, but not nearly as bad yet. I still have the IVC filter in me that's made of nickel, so I'm hoping that's what is still causing the pain. That has now been scheduled to be removed on Friday, February 13.

I have moments where I'm really good, and moments where I'm horrible. The last two nights I've actually had a normal night of sleep with no interruptions, so I'm happy about that. It's almost been four weeks since my surgery, and while with my other surgeries I was physically back at work by now, it's not ready to happen yet. I have to remind myself not to beat myself up about it. This was basically a two-surgery procedure, so of course it's going to take longer to heal. Besides, with the hours I'm putting in remotely at least I'm able (or at least trying) to stay on top of it all. I'm doing the best I can, while making sure at the same time I don't push it.

Brad should hopefully be coming home tomorrow, which I'm looking forward to. After spending almost four solid weeks with him, it's really lonely to all of a sudden not have him here at all. The weather should also be good for driving, which gives me great relief. This winter has been nothing but storm after storm!

Tomorrow should also be a nice day in Ohio (meaning no snow), so I'm planning on getting out again. My parents are picking me up for lunch, and then we're heading to Lowes to pick up a few things for our house. I'm looking forward to getting out, as the house is beginning to feel a bit like a prison! I hope everyone out there is doing well and staying warm.

Day Twenty-Four

New development today - incision pain is finally starting to kick in. I've been lucky; for the most part that pain had been pretty minimal until today. But, for whatever reason, the numbness I had been feeling around both the front and back incisions is quickly going away and boy, am I sore. Oh who am I kidding - it really, really hurts.

It of course didn't help that I spent a huge part of my day in a chair with a laptop on my lap (pressing on the front incision) working. I had a huge software issue that was hindering me from doing some very important quarter-end financial work, so that tripled my work day. In fact, it's officially 12:45am on Thursday and I am just now calling it a day for my own sanity. If you recall from my previous blog entry, I started my work day around 7:15 am this morning. As much as I'd love to stay up and finish a particular set of reports I'm working on, it will just have to wait until tomorrow. I'm going to go lie down and see if I can actually get some sleep. I doubt it, but I'm going to try.

Day Twenty-Three

I'm writing this a day late, but yesterday was just an odd day. I spent almost all of it on my computer working, with the exception of getting ready, making meals and making sure I got my exercises and walking in. By the time Brad got home and I had dinner in front of me I was so exhausted I could barely eat. I finally ended up on the couch and fell asleep in an instant, only to wake up around 11pm to take medications. While I struggled for about 20 minutes to get comfortable, I was then able to fall asleep again. 6:30am came and off went my alarm notifying me to get up, get ready and be on my computer working by 7:30. It's not that I have specific working hours, but that's usually when I start and it's more out of habit than anything.

I'm still feeling pretty tired, but as Brad correctly notified me, it's probably normal that I'm still exhausted considering I've hardly slept this past week. But as much as I would love to fall back asleep right now, I have work to get done. At least I'm lucky and can stay indoors, as the weather here is dark, cold, icy, and likely going to snow later.

Day Twenty-Two

Made it through my first six-hour work day at home, and also my first day at home without Brad. Last night I slept a total of about two hours, and surprisingly only felt the need to sleep about 90 minutes in the afternoon. I don't know why I couldn't sleep; it wasn't pain related, I just wasn't tired enough to fall asleep. Instead I ended up emailing some people, doing some work and watching DVD #1 of "The Office", Season 5, which I got for Christmas. At least I was semi-productive.

The best part of my day was that my mom brought over an old recliner they had in the basement, which everyone forgot existed. While I love my couch for lying down, it was not a good "working" place to sit for any length of time, as it would really bother my hip. So my mom brought over the recliner, and with two strategically placed pillows it is now my new work chair. It is very comfortable, and really relieves my hip pain. I think I now have everything I need to get through the next couple of weeks at home.

Day Twenty-One

Short post tonight. Had a rough night with lots of back/hip pain. Because my night sleep was so lousy, I slept in today until about 1pm. I then spent the entire afternoon and evening doing work related stuff, and now it's almost time to go to bed again!

Brad returns to work tomorrow, and it really hit me tonight. It was great spending almost four weeks with him, even under these circumstances. Who knows when we'll have that kind of time together again in our lifetime! He is my best friend and supporter, and I will miss having him here. And like I told him, it's not because I'm now 100% on my own taking care of myself during the day, because I can do that just fine!

This week I increase my work hours to about 6-7 hours a day - still at home - so I'm hoping I can handle it. My health still varies a lot from hour to hour, day to day. I guess we'll see!

Day Twenty

Wow, it's amazing that 20 days have passed since my surgery. In some ways it seems longer, and in other ways shorter. Very hard to believe.

Today was our Suntken Christmas at the parents. I was fine initially when I woke up, but in the middle of getting ready I went through this spell where I felt lighted-headed and sick to my stomach. I've been getting this about every other day since I left the hospital, and it comes out of nowhere. I thought it might be related to my meds, but today there did not appear to be a correlation. Usually laying down or eating something like a piece of toast remedies the situation, and today was the same. It turns out my brother, who was driving up from Athens, Ohio this morning, also was ill so between the two of us we delayed the start of our Christmas from 10:30 to noon.

Despite my poor brother struggling with a bad sore throat, it was a wonderful day. Lots of stories, laughter, and it was just a great time; so great that we got home just a little before 11pm! My back muscles are sore - the La-Z-Boy chairs were not as comfortable as I predicted - but I managed. It has been so long since we've all been together for more than just a few hours, and with the stress of the surgery behind us I think everyone just felt like a huge weight had been lifted. Today was our day to celebrate and give thanks as a family, I think we accomplished that.

Day Nineteen

Last night I had difficulty sleeping. I'm not sure why, I just found myself awake a lot; I couldn't get comfortable. I reduced my pain meds on Wednesday evening and I'm definitely noticing a difference -I'm not as tired/foggy all the time, but the pain is also more difficult to deal with. Around 6:30am this morinng I finally was able to close my eyes and sleep for about three uninterrupted hours.

I've spent this afternoon on the couch, struggling to rebuild my work computer remotely. Before I left our IT guy set it up so I could access my work computer through a program called LogMeIn. It worked great until I left the hospital...and found out that my work computer had a massive hard drive failure. I initially was in a panic that I had lost everything, especially my thousands of emails that I have archived, but I was smart. I had backed up my company computer files on my own the weekend before I left, including my email, so in reality I only lost a week of emails and a few documents.

While the IT guy got me a new hard drive and the software installed, today I have been remotely transferring over my files and reorganizing everything. This has taken longer than I thought it would. In between I've been working on work-related projects, so today is truly a work day for me. I've been making sure to get in my exercises and walking, but everything else is just work. It's a bit hard to focus as the pain is nagging, but I'm managing. Today I'm making an effort to ice my right hip as much as possible - 20 minutes on, 20 minutes off. Maybe that will make a difference.

Tomorrow we are having our "Christmas" with my parents, brother, grandma and her husband in the late morning/early afternoon. My parents are hosting, which is only ten minutes from our house. They have several comfy La-Z-Boy chairs that recline, so I'm thinking that will be pretty nice. I don't think it will be too draining on me, as I think everyone there will be trying to do whatever they can to make me comfortable. I'm just looking forward to being with family.