Wednesday, July 1, 2009

the topsy turvey life I lead

Today is a good day! I know one day is not a huge victory, but I am taking things day by day. I never know when I will have a good day or a bad day. I just roll with the punches and keep getting up. I am Rocky who refuses to stay down (even when Mickey was urging him to stay down). I am working hard at trying to get my new classroom ready for the next year, and it is made more difficult with the fact I can only do so much at a time.

My family has been a terrific support group. They are all a husband, father, and son could possibly want. That's it for today. It's funny that when the days are good the posts are shorter.

Sunday, June 28, 2009

any word is the hardest word.

Hello friends. After some urging from some of dear friends, I am updating my blog. It has been a while since my last entry. My life continues to be an up and down rollercoaster. As I write, I am going through one of the toughest relapses yet. Not only is my speech impared, but it is difficult to speak at all! I am glad this is written and not oral. I am sure I don't need to express to people how frustrating it is to struggle with the ability to speak. Those of you who know me know it is something I liked to do.

Add this to the list of issues that I have been going through, and you get the portrait of one very strange person. I have more doctor appoinments lined up. I have more testing to schedule. I have more faith to put into this.

On another note, I wanted to say two things about Michael Jackson. The first thing is that I feel we was one of the most gifted performers we will ever see. He touched millions with his talents and skills, even if he was a tad (or rather off his rocker) strange. The second thing is . . . enough already. By watching the news and following news websites, I think Michael was honored enough within the first 24 hours of the discovery. Presidents don't get this much coverage when they die. I saw that CNN.com had the Michael Jackson story as their lead story for two days. I'm sorry, but aren't there bigger issues in the world? I feel for his family, his children, and those who loved him, but shouldn't we start to focus on the other issues going on. I read that a reporter asked the White House Press Secretary why Obama didn't make an official statement about Michael's passing sooner. I think . . . and I am just taking a shot in the dark here . . . President Obama has bigger issues on his plate.

Saturday, May 23, 2009

Still out of work, still searching for answers, still pushing on

I have decided to do the only I know how to do at this point . . . push on. As the doctors keep coming, and the answers just become more questions, I will keep pushing on. I have a sense of hope returning. I have a sense of this can - and will - be treated starting to return. I have a sense that something good and positive will change about me because of this journey (though I have no clue what). I will push on.

My support system could not be better. I have worked closely with two doctors who couldn't be better. I will push on. As I try to do my job as best I can from home, which is hard when you teach, I will push on. Sometimes I just need to say it . . . or write it.

Saturday, May 16, 2009

This just in from the big city

The big JH contacted me about the cognitive testing I did while I was there. While the results weren't able to shed any diffinitive light on anything, there were some things that came out of it. It did show that I have a mild cognitive disorder. The doctor said that it wasn't anything that was terrily troubling, which is good news. She did say I showed weakness in my processing speed and motor control of my dominate hand, among a few others. She also said the cognitive testing did not match the results she would expect from someone with conversion disorder.

Next week I have PT, Three doctor appointments, and I need to make an appointment to see a rhumeotologist (not sure if I spelled that right). The doctor from JH thinks it could be Auto-immune. We will see. I finally have started to read large print books, and that makes reading so much easier.

Monday, May 11, 2009

And the verdict is . . .

No work for at least two weeks. I am also not allowed to drive until I see my neurologist. My doctor is understandably conerned about my condition. He informed me today that I had lost some muscle mass in my left leg. That muscle must be going for some reason. He has suggested that I try an eye patch for the double vision He said covering one eye may help. It does for a little while. Now, I need to find some new ways to stay sane around the house. I can do some house work, or as much as I am able to do. I need to revise my final. I can work on slowly grading papers. Until next tim.

Sunday, May 10, 2009

The teeter-totter of recovery

It is amazig how one day I can feel better, and the next I could feel not so good. My double vision is not as good today as yesterday. I am thankful I have a decent idea where the keys are on the keyboard. You will need to forgive any misspellings and typos. I see my doctor tomorrow and talk with him about where we go from here. I am pretty positive he will say I can head back to work on Tuesday, but there is no definites anymore.

My amazing wife and I got out last night. We actually spent some time together that wasn't in a hospital room. We saw two movies. We don't get out as much as we used to, so when opprotunities like this arise, well, we jump on them. After two movies, my knees were in pretty rough shape. They were very stiff and sore.

It's mother's day, and instead of taking my mom out (which I can't because I can't drive), she is coming over so we can order food.

Saturday, May 9, 2009

The waiting game

The waiting game to see if I get cleared to drive is on. I see my doctor on Monday, and I am not sure what he is going to say. I have become such a frequent visitor to my doctor's office that I feel like Norm from Cheers. I really like my doctor, and I have seen him so much he seems like someone who lives right next door to me. I hate taking up so much of my doctor's time, but what can I do?

I got in the driver's seat of my car ( I didn't actually drive; I can't do that until . . . well, you know the deal) and tried the pedals. My ankle was a little sore, and I wasn 't necessarily moving with the same speed that I usually move with. My vision was okay, but I did have some minor (very minor) double vision while sitting behind the wheel.

I am still trying to figure out what is going to happen with work. I am actually about to have my wife drive me out to my school so I can get some work to bring home. I can input grades, maybe read a paper or two, and work on revising the final exam. All of these things I was going to start when I returned to school last Monday, but you know what they say . . . best laid plans and all.

I am hoping I can get back to school this coming week. I miss my job and the students. They are in the final stretch and I just want to help them get across the line and finish. We will see what happens from here.

Friday, May 8, 2009

Doctor Me

I made a big decision today; I am going to take the bull by the horns and start researching things on my own. I purchased a few books from Amazon.com and one from Borders to start learning more about the various parts of thi little medical mystery. I hope to achieve my Medical degree from University of Borders and the satilite campus of Amazon.com U. I hope to do my residency at the school of House, located on the campus of FOX University.

Physician heal thyself, right? I have started to embrace that this may not be as easy to fix as I first thought. I am now ready to take hold of the fact this could be two different conditions working together. I hope to get an appointment with a specialist on Lyme Disease, and I hope to see some other doctors as well. I have read stories/ histories of people who have suffered for years without knowing what was bothering them! Let the good times roll.

Feel the burn

Three days out of the hospital and I am slowly starting to have a decrease in the double vision. As for the other problems, like the headaches and the weakness, that may be a slightly longer road. I had PT for the first time yesterday. Read the title of this entry and you will get an idea of how I feel today. There is quite a bit of work to do on that front.

I have made appointments with doctors for the next few weeks, PT appointments, and all sorts of other appointments that deal with my condition. The one thing that they wanted me to check with was a Lyme disease specialist. I called one, but she didn't take insurance and it cost a bloody fortune. Check that one off my list. I have a list of other names to contact.

It just blows my mind how expensive it is to be sick. Thank goodness I have health insurance, because if I didn't . . . Whoa! But these are all the trials and tribulations that I have to face with my family. I know this will all get better . . . at some point. I am holdig on to hope that we will find the right combination of treatments.

Wednesday, May 6, 2009

And we end just as we started

I haven't posted in a couple of days due to the fact that I have been in the hospital . . . again. I was released from HUP last night. I spent two days in the hospital with no new news. No news is good news, right? Well, at this point some news might be better news. My right side has loss some of its strength and my double vision got worse. My MRI was, of course, clean as a whistle. So, here I am at home. We are winding down the school year, and I am finishing the same way that I started it. At home. The good news is I will be back at work next week.

I look forward to returning to work, and I look forward to trying to get some of my life back again. Until next time, my eyes have done all they can.

Sunday, May 3, 2009

The good, the bad, and the thankful

Every streak needs to have an end. I have had some pretty okay days recently. I had some pain and plenty of weakness, but my head was in pretty good shape. Well, that streak ended this weekend. Saturday was a rough day, and Sunday is no better. My dizziness is worse this past two days, and today I woke with a killer headache. I feel pretty lousy today. That being said, I am still thankful.

A person I know was recently injured. Injured pretty bad on top of that. It made me realize that even with all the stuff I have going on, there are issues worse than mine. I am thankful for what I DO have going for me. As I stated in a previous post, I count my blessings. I add to that list the fact that I still do have okay days. I don't know what the future holds, but I still have the hope that the streak will come back.

Wednesday, April 29, 2009

Count your blessings

One of the things that has come to light during the past nine, almost ten months, is that I have a lot going for me. I was listening to the chorus of my high school rehearse, and they are singing my wedding song in the concert. It brought me back to a place when my body was fully functioning and I was . . . younger. So, here is a brief counting of my blessings:

1. I have a wife that I love more than any words can say. She is my rock. If it weren't for her, I would be some boat just floating in the middle of a hurricane (and I am talking "Perfect Storm" hurricane here).

2. I have three amazing children. They are gifts that brighten my mood on a daily basis. They are blessings from the heavens.

3. I have two amazing parents who support me and respect what I do. I tell my students that your parents will always be your parents, and I happened to get lucky with the pair that I got.

4. I have incredible in-laws (and that includes my sister-in-law and brother-in-law). They treat me like part of their family without hesitation. I know some people are not so lucky.

5. I love to teach. My job is a passion. There are plenty of people who roll out of bed, into their car, and drive for a countless number of miles and hate what they do. I love what I do. My students are not always perfect (of course nobody is). I can't even say that I never have a bad day with them, but they are good people deep down. Many of them are struggling to find how they are going to live their lives once they leave the safety of this "prison" as they call it. For a prison, there are many who seem to want to stick around. I just hope I can play a small part in their journey.

6. I have amazing friends. One of my closest friends sent me an email today wishing me a happy birthday and just saying some remarkable things. This friend is no stranger to struggles and health problems - Her family is going through quite a fair number of them now - but she still tried to make ME feel better.

7. I find new ways to make the day work for me. I am very thankful that I can find ways to work with the pain, with the struggles, with the memory and concentration issues.

I never know what the next day will bring. Some of the days that are ahead will be rosy, and there will be days that I will have more thorns than rose. I know this. I am trying to embrace this. The seven things above (which is only portion of a list I could generate) help me make my journey in the new world in which I am exploring.

Monday, April 27, 2009

A day without the cane

I decided today would be a good day to test my walking without the cane. There is probably no really good day to give it a shot, but the sun was out and it felt like a steam bath in my class, so why not. The good news is I made it until 2:00 PM without the cane (just some limping). Knowing there is good news, most people assume that there may be bad news as well. At 2:00 PM my knees and legs decided to weigh in on my little experiement. They weren't real happy. Now I am sitting and giving my legs the rest they need (and were demanding. If they go on strike, then I have some serious issues.).

I took my tired legs to see my family doctor today to fill him in on my trip to the big JH. I need to tell you how wonderful this doctor is. He has managed this case and kept pounding at things like it was his job (wait -- it is his job. My point is he was really, really, really, really excellent.). He gave me a script for PT, so I am going back to the balance activities, hand bikes, the crazy leg lifts and arm stretches, and the healing power of hard work.

Sunday, April 26, 2009

They don't make me like they used to

So, one of the hardest things to deal with is how the things that were once a piece of cake, now seem like a chore. I just went with the family to the carnival, but it felt like a trek of a thousand ages. It's times like this that I just want to scream. Oh well, every day can't be perfect (I would just like one every three weeks or so).

The big JH

Johns Hopkins. Those two words can leave people stunned. You can't get any better than Johns Hopkins. One of the top hospitals in the country and the world. No one can figure out what is going on, then go to Johns Hopkins. It doesn't say anything about those doctors being . . . human. When I say that, I mean not all knowing entities. They don't always have all the answers. It is a wonderful facility, amazing medical professionals, and provides truly exceptional care. That still leaves people, like myself, a little deflated when even they have no answers for the illness that has now plagued me for almost ten months. Intrigued?

I guess a brief synopsis is in order. It started in July with sudden chest pains that signified a heart attack. After two days in a wonderful hospital, the heart attack was ruled out. During the course of the next week, I began to weaken on my left side. It all culminated with what appeared to be a full out stroke. Not so fast! After three more days in the same facility, all test came back clean with no sign of a problem - unless you consider my whole left side giving out, slurred speech, and a cool half smile (and I don't mean in the Harrison Ford/ Indiana Jones sort of way) a problem. Prescription: Physical Therapy, Occupational Therapy, and the hope it was a one time event. Wait! I can almost hear you now. That's right! This one time event returned.

In September, after returning to school (I teach), I had a full blown relapse. My doctor pulled me out of work to get to the bottom of the problem. Little did any of us know that we were dealing with a bottomless pit. Anyway, fast forward two weeks and I am back in the hospital. This time I went through more MRIs, MRAs, and had the additional bonus of a spinal tap. And the answer was - - there was nothing physically wrong.

Let's jump ahead to this month, and I have been suffereing from symptoms since the end of March, and things are just going down hill. I recently returned from Johns Hopkins hospital with no more answers than I went with.

This is not a woe is me type thing though. I know there are people way worse than me out there. I have a lot of wonderful things in my life. I am married to an amazing woman, I have three fantastic children, I have fabulous parents, I love my in-laws (which a lot of people cannot say),and I am in a job I adore. But, if any of you have the number for one Dr. Gregory House, I would love to have it. I will even take the numbers for Dr. Cameron or Dr. Chase, I'm not picky. Come to think of it, if you could get me Hawkeye Pierce or Trapper John, I would take them too. And maybe any of those doctors from ER; they seem to have some free time on their hands recently.