11.29.2008

Getting Closer!

I had two appointments with a hematologist this past week. I left the first visit feeling like I was being pulled back in time, as he wanted to run a whole series of tests to support his theory that I had an auto-immune disease, and not an implant reaction. I was down this road earlier in the year, and knew that this was not the case. Brad went with me to the second appointment, as I had a strong feeling that what I would be hearing would not be good news, but we were both surprised...as we ended up with what we considered the "best case scenario!"

After running a myriad of tests, the doc has come to the conclusion that my low platelet count is likely due to the implant reaction. I think he was a bit surprised. In fact, the only things that showed up as something to be concerned about support the implant reaction theory and are not consistent with anything else. He agreed with me that as long as I had the artificial disc in my platelets would be low, so it would make no sense to further postpone the surgery since the surgery is likely what I need to correct the issue. This being said, he is giving his approval for me to move forward with the surgery, with the suggestion that they have platelets on hand for a transfusion during the procedure.

The one slightly sticky point is that my platelet count tanked even more this past week. It was at 21, and as of Wednesday I was at 13. The 13 is unbelievably low, so I'm now on a heavy dosage of steroids to bring the count up. I'm taking 10 of these things a day for four days, and then will go into the doc on Monday to see what the platelet count is. I'm guessing that if it does help bring up the count, he may recommend I take them leading up to the surgery to keep the count higher. Though the count is very low (should normally be at least 150), the good news is that the platelets I do have seem to be very healthy, as I'm not exhibiting issues that most people with that low a count would be having.

On Monday I will be working with my Baltimore surgeon's office to reschedule the surgery, which I'm hoping can still be done in December. It's no longer the best time for me to do this work-wise, but I'm hoping I can still make it work. I'd really hate to have to wait until March to get this resolved (since with my job I have year-end close to do in January & February), especially since my pain levels continue to worsen by the week.

In the meantime, these last few days have been a bit odd, as the steroids are a bit difficult to stomach. I'm taking two Zantac twice a day to help neutralize the stomach pain the meds cause. In addition, the steroids have a tendency to usually make it harder to sleep, can cause headaches, and can also make you starving all the time. I'm not dealing with the starving part, but I have been hit with everything else. The good news is that I think I'm starting to get use to them, at least.

Thanksgiving day was a tough one, and I found myself lounging around my parents house most of the day feeling ill. Thursday evening I was really bad, but Friday was a bit better and today - though I was wide awake at 6am - I feel a little bit better still. I need to start re-preparing for my surgery once again, so I'm planning on taking some time today to work on that. On Sunday I'm hoping to meet up with my friend Moe in Cincinnati for lunch, as I haven't seen him in more than a year. Considering we're only 3-1/2 hours apart, we should see each other more, but with opposite schedules it makes it difficult. If I can manage to do the trip tomorrow, that should be a fun day.

11.19.2008

Brand New Day

No, this is not a post about Sting's early-2000's hit song. I know they played that thing on the radio at least once an hour for a good year or so, but quite frankly I never was a fan of it.

While I woke up at 4am wondering if the past 24 hours had been a dream - or actually more of a nightmare - I found myself with a better and more positive outlook. It is a brand new day, after all.

Yesterday was one of the worst days of my life. And while on the surface I know it doesn't seem that bad, it was really a breaking point for me. Months and years of struggling and fighting, thinking that maybe my need to fight would be ending so soon, only to have it taken away from me. I have worked so hard to get to this point with my health and getting a resolution, knowing the toll it's taken on not only myself but my family...this was a blow to them as well. I've used every last ounce of energy I had, thinking that come Monday I would not only have my surgery but a much needed break from everything...and now that's gone, at least for now.

While I usually try to handle myself in a calm, rational manner - especially when dealing with medical professionals - yesterday I just lost it. Completely lost it. The way things went down yesterday completely pushed me over the edge. The stress I have allowed to build up internally just exploded, and for about six hours I found myself in a place I had never been before in my entire life. When I woke up this morning, I realized that my breakdown wasn't just about a canceled surgery, but was really about 20 years of struggles and difficulties with my health that I have internalized. I've taken all of my experiences and feelings and shoved them into a place so I could just "ignore" them and keep moving forward; I've never truly dealt with the situations. I haven't had the luxury of dealing with them, as I needed to focus all of my energies on trying to maintain as normal of a life as possible and coping with the pain. And if I'm being honest, I've felt myself breaking this entire year...it was only a matter of time before I had a monumental breakdown. But now it's over, and it's time to breathe, refocus and rebuild. My life didn't end yesterday, it just changed my path a little bit. And probably for the better.

I'm disappointed that the surgery is off, but hopeful I can still have it rescheduled for December. My boss is understanding of the situation, and I've now been told to do what I need to do and not worry about work...and since he's my boss, I'll gladly follow his orders. I have an appointment with the hematologist today, and I'm even coming armed with support for this one - my dad. It will not only be a first time in over a decade that I've had someone with me for a doctor visit, but I think it may be the first time that my dad is my support. I think this will be a positive thing, as I find myself drained in every way imaginable and little "fight" left. I know he'll speak up for me and fight for the right testing and treatment to get this thing moving and over with.

I want to thank everyone again for their support. I apologize for my ramblings, but for me writing is the most therapeutic thing I can do. I'm hoping one day I can look back at all of this and have a written account of my struggles...and try to come up with a way to make sense of it, and maybe even a purpose for it all.

11.18.2008

Devastated

My surgery was canceled approximately 20 hours prior to when I was to leave for Baltimore.

My platelet count is extremely low. 21,000. While I'm certain it's due to the high ANA levels in my body...which is my body's way of fighting the implant...and unfortunately also "fights" tissues, muscles, bone and little things like platelets...it doesn't matter. They can't operate on someone they fear might bleed to death on the operating table.

So here I sit, in the dark, at home. My head is pounding from the past two hours I've spent crying hysterically. I cannot believe that I came so close, just to have it taken away from me.

My fear is that now I have to see a hematologist. This person will no doubt run their tests and ignore any evidence I bring to the table as to help educate them about my situation. They will likely try various things that won't work, will diagnose me with something that I don't technically have on my own, but because of this damn implant that I'm now stuck with for an unknown amount of weeks or months more than what it's already been. This process will take weeks because it is the Cleveland Clinic, and because I'm not a patient with wealth and fame that might bring them some more prestige.

This was my chance to have the surgery with little interruption to my job. Year end close starts January 5; even if I have the surgery three weeks from now, that's putting me back at work at the end of January. I don't think that's feasible, at least if I want to keep my job. A person doesn't take off for six weeks during the most busy time of the year unless it's due to a heart attack or stroke.

I'm just angry. My platelet count was low in February - 110,000. My ANA levels were high; for the life of me I don't understand why my primary care physician didn't think it would be a good idea to check these levels once in awhile? After all, I see her every darn month to get prescription refills, because she only writes me stuff for 30 day supplies. After all of the extra time and energy I have spent preparing for this on a personal and professional level, and to have it taken away from me...I just have no words. I feel like I've been run over by a truck, and then the truck backs up and runs over me again, repeating the process about 100 times over. I'm just devastated. And I have no idea where to go from here.

11.15.2008

First Snow

As of November 15, we have now received our first snowfall of the 2008-09 winter season. What started as 56 degrees and cloudy turned into showers, rapidly dropping temps and then snow. It's ironic that exactly three years ago it was almost an exactly similar day in Bettendorf, Iowa, when we held the visitation and funeral for my Grandpa S.

11.12.2008

Head Still On

Though I woke up this morning not feeling too great, after I took some vitamins and sinus meds I'm feeling better. Much better than yesterday, thankfully. I don't remember much of the last few days, but I'm still here.

Something weird did catch my eye this morning. On a news web site there were two separate articles relating to grandmothers:

Grandmother Gives Birth to Daughter's Triplets
Grandmother Finds 3 Relatives Dead in Dallas Home

I'm not sure what to make of this, but I know this much - grandmothers are a very important part of our lives. I for one am glad to have both of mine still in my life at the old age of 32. I'm very lucky indeed.

11.11.2008

Headaches

For the last few days I have been suffering from ever-increasing headaches. I've narrowed it down to the following potential causes:

1. Going off a few medications that I was taking regularly, that I have to be off prior to the surgery so I don't bleed to death on the table.

2. The fact that I can't get in to see my primary care physician for the required history, physical and pre-op tests until Monday at 2:40pm. The results must be in Baltimore by Wednesday or I can kiss my surgery date goodbye. Considering this is under the Cleveland Clinic umbrella, you can see why I'm gravely concerned.

3. Work-related stress. Trying to wrap-up 3rd quarter numbers and about 100 other things. Plus I need to work on the transition/re-assignment plan so things don't fall apart when I'm gone. The 12+ hour days (not including drive-time) are probably not helping either.

4. Lack of sleep. I've been waking up at about 12:30am the last few mornings and not getting much sleep after that. Partly due to pain, partly due to worry and too many thoughts running through my head.

5. Unknowns still being unknowns. I'm still waiting to hear if this surgery will even be covered by insurance. Plus I'm waiting on information on an outpatient procedure I have to have done Thursday in preparation for the surgery. I have to be there at 7am, but Brad can't join me until later that morning as he has a class he can't miss the night before. I need to figure out how I'm getting to/from the hospital, plus I'm anxious as to whether this will put me out of commission in the days prior to the surgery. After all, I really wanted some time to just enjoy D.C. and try to get my mind off Nov. 24.

6. Lack of me time. I'm so busy trying to wrap up work and homeowners association stuff that I feel I have no time to prepare on a personal level. Considering I'll be away from home for three weeks, I really need that time but haven't found any yet.

I'm guessing my headaches are caused by "all of the above." And while I should stay late at work, or run personal errands after work, I've decided that I will instead be going home, laying down in a dark room and hoping that I'll get some sleep and feel better when I wake up in the morning. And if someone can maybe give me some fluids through an IV or something, I wouldn't be opposed to it. A glass would work, too.

11.09.2008

The Details

I got back home late Friday evening from Baltimore, my mind swimming with all of the things that need to happen in these next few weeks.

The surgery has been scheduled for Monday, November 24. I'll have to be there on the 20th for an IVC filter (outpatient procedure), and the 21st to meet with the case manager, so that limits my time back in Ohio even more. I will likely be in the hospital until the day after Thanksgiving, and then will be taking up residence at a Residence Inn about 10 miles from the hospital. My mom has been wonderful enough to agree to take care of me while at the hotel, where I will be stuck for another 1-2 weeks depending on when I'm good enough for the surgeon to release me. I'm guessing I'll be heading back home the week of December 8.

Though this will be the most complicated surgery I have had to date, I do feel confident with the surgical team. The ortho surgeon has removed over 100 of these discs - the most any surgeon has removed in the world - so I'm in good hands there. The vascular surgeon is having me go through some extra tests and procedures so I don't bleed to death. He seems pretty sharp, and was kind enough to see me in between surgeries on Friday.

So what does this all come down to? The next two weeks will probably go by faster than I can imagine. I'm as ready as I'll ever be to get this thing done, so it's probably a good thing that I'll be so busy I won't have much time to think. And as an extra benefit before the surgery, I'll have almost four whole days in the Baltimore/D.C. area to spend with Brad and just hang out in one of my favorite towns. Kind of a last "hurray" before I'm laid up for weeks. Always need to look at the bright side.

11.05.2008

Thanks for Nothing, Cleveland Clinic

On October 23 I went to see the surgeon who performed my second spine operation. Though I didn't mention it on this blog, it was a nightmare. I spent 5-1/2 hours there and all but 5 minutes waiting, and at one point was so upset with how I was being treated - including several conversations my doctor had with others about my situation when he was right outside my room - that I hand wrote a "To my doctor" letter on spare paper I had on me in an effort to calm down. Maybe one day I'll just have to post that.

So at the end of the appointment I requested all of my records. After all, I wasted my entire morning there so I should walk away with something, right? I wanted to be able to take them to Baltimore so surgeon #3 could see the progression. Every film I had taken on my back since May 2005 was in the Cleveland Clinic's hands. The surgeon had his secretary give me a form right away to release my records, and then took it from me directly to be processed. I was told that it would be expedited. This was on Thursday, October 23.

So two weeks later, I have not received a thing. My work schedule has been so dreadful that I haven't found the time to think "Hey, you should call CCF and check the status of your records." Well, actually it pops in my head every day, but only at 7:30pm at night when I'm driving home from work. Until today. Yes, last minute, but that's my life lately.

I take 10 minutes to find a number to call, another 10 minutes on hold with the records department. Figured I would go right to the source instead of trying to call a surgeon's secretary who never answers her phone and takes days to call back. I give my patient information, and then I hear the dreaded words. "Sorry, we have no record of your request. It must not have made it to our department."

So now I'm going to Baltimore tomorrow with nothing from CCF other than some test results I can print off the web and the set of x-rays I have from October 23. That's it. I probably should be surprised, but I'm not. Furious, but not surprised.

I'd love nothing more than to tell CCF and the staff I've had to deal with where they can go, and to have twenty minutes alone with a really good punching bag, but for now I'll just have to suffice blogging about it. Tomorrow is around the corner, and "it is what it is."

In the meantime, if you are in need of medical care and want to be treated like some hurt cow that's just going off to the butcher shop anyway, go to The Cleveland Clinic. They specialize in making you feel about two levels lower than dirt. If you want to be treated with a little respect, then go somewhere else. University Hospitals, maybe. I'll let you know.

Exciting Times

I woke up at 2am, unable to fall back asleep. I watched McCain give his concession speech, and Obama give his acceptance speech, which I had recorded earlier in the evening. I then switched on the DVD player to Disc 1 of "The Office" season 2, which I watched until the alarm went off at 4:15 am.

This is definitely an exciting time to be an American, and it was great to see history made last night. While the Democrats have yet to sell me on their plan for success, it's always an inspiration to see someone come from humble beginnings make it to the top. Only in America, and that's a great thing.

I always get worked up on election night, so I'm not surprised I only got three hours of sleep. Still bummed from my new fish-less situation, and horribly anxious about my surgeon appointment on Thursday, I have a feeling that many sleepless nights are ahead of me. Not because of the fish, but the surgery thing.

On a side note I have gotten a lot of e-mails from family & friends that read the blog, giving me encouragement for Thursday and providing me with some great laughter, too. I need to write you all back individually, but since that won't occur for a few days given my schedule I just want to say thank you. I feel I'm lacking mental and emotional strength lately, and to have so many great people behind me really helps. It's difficult for me to communicate what's really going on in my mind, but I am ever so grateful for each of you.

11.04.2008

President Obama

Ohio was just called at 9:30pm for Obama. I think it's time to start calling him President-Elect. Congrats to the Senator from the great State of Illinois. And now I can go to sleep!

No More Fish

I came home tonight after a long day - including the voting thing - and found Andy dead. Obviously there must have been something that ran through the tank, because I just lost my only three fish in a week. It's actually the first time I've not had a fish since 2003; there have been four generations.

I know they are just fish, but I've always found them fun and interesting. They were always great to watch, and were a calming presence. They were a source of happiness, and I'm just a bit empty inside without them here.

Election Day 2008

Instead of waiting for the polls to open here at 6:30, I decided to head into work exceptionally early so I could hopefully get out by 4:30 to go vote. I've already heard from some of my Ohio family and co-workers that the lines are huge, so I guess everyone will be wasting a good hour in a line today. Not a bad problem to have, let's just hope those administering the election can handle it!

11.03.2008

Election Day Eve

After what seems to be a decade of campaigning, Election Day 2008 is just a day away. I'm not saying there will be results, just that everyone (should) be done with their voting tomorrow, if in fact they decide to vote. I used to be a person who thought that everyone should vote who can, but after some more life experience I've decided that if a person doesn't want to vote that's their right, too. All I ask is that those people keep their mouths shut because you really have no right to complain if you didn't vote.

With everything else going on in life, politics consumes more of my mind than I'd like. It is usually a cause of stress, anxiety and frustration more than anything. No matter what the results are after tomorrow, I don't think it will change anything in my own mind. Sad, but true. I've come to the conclusion that the governmental system is broken because we have not done anything about it. As American's, we've become lazy and taken our rights as U.S. citizens for granted. We've bought into the media and politician jargon that the only thing we're good for is a vote. "Vote, then don't worry your pretty little head about the rest." The truth is that we have so much more power than what anyone wants to actually talk about, because if most people understood what power we have then most politicians would be out of their cushy jobs and people would not be so dependent on their power and how they choose to use it.

I wasn't planning on this little rant, yet that's where blogging takes me today. Recently I came to the conclusion to stop complaining and start doing something constructive; to stop feeling helpless and start being helpful. So I've taken the first step in doing something which, when it's more developed, I'll share. With any luck, it will be a good project for me to start when I'm at home recovering from surgery.