Introduction

I was diagnosed with CIDP just two weeks ago. I am still coming to grips with the specific diagnosis, but I have known there was probably something wrong for a couple of years now. I have the relapsing/remitting type, which I guess means I can have long periods of time where I experience no symptoms, and then out of nowhere it can come back. Based on my medical history my neurologist believes that I have had CIDP since my teenage years, and looking back at many different events in my life that makes sense. I am by no means an expert on CIDP. I know that it is a neurological disorder where your auto immune system attacks your nerves, similar to MS. However, CIDP attacks your peripheral nervous system whereas MS attacks your central nervous system. Here are some other things I've learned:

1. It is not a death sentence

2. It impacts everyone differently
3. It is about 1/10 as prevalent as MS, which is why there are no bike rides or running events to raise money and awareness
4. The symptoms are treatable, but as of yet it is not curable (although there is some promising breakthroughs in stem cell research)

A couple of years ago, I started documenting my stories… Not because I planned to share them, but more so because it helped me get a better understanding of myself. Now with the recent diagnosis, I have decided to share them. I will have a bunch of posts that I will deem 'pre-diagnosis' which will come soon, and the post diagnosis will begin as I start to come to terms with CIDP.

Ding Ding Ding Ding…We have a winner!!!

I took my test earlier this week and I passed (a test I did not want to pass) with flying colors. The week has been a whirlwind of emotions and I am now on my way to a well earned family vacation! First, I had the spinal tap on Monday and all went well. I did not have the headache they warned me about, so I got on a plane and went off to work on Tuesday. I was on pins and needles waiting for the results, but I tried to push the anxiety aside and get to work. Tuesday went well, but on Wednesday I could barely work because of the pain in my head and shoulders. Long story short…the pain from a spinal tap typically BEGINS 48 hours after the procedure and can last up to one week. The pain was debilitating, and I had to lay down for three straight days! My wife was fairly understanding…so in the end it all worked out.

Now, while this was going on I received the results from the test. The Dr’s message was that the tests confirmed that I had elevated protein in my spinal fluid. Huh? I had read that elevated protein and elevated white blood cells = MS, and he said nothing about the blood cells, so I took that as a good sign. PLUS, the nurse said that I had Demyelinating Neuropothy…that it would fix itself…and not to google it. Well…that worked about as well as when I tell my dogs to ignore the cake on the counter. As soon as I was off the phone with her I was up on the counter…all up in that cake. The more I read, the more confused I got. Most of the time demyelinating neuropathy’s are brought up with CIDP and Guillian Bar’s Syndrome (GBS), and I knew I did not have GBS, so I was confused. I knew that CIDP was serious and rare, but he did not say CIDP so I was not sure what he meant. I set up an appointment with the dr on Friday and did my best not to eat the cake.

By the time Friday came around I could barely stand up due to the pain. I took a double dose of pain killers and headed off to the Dr. In the lobby the receptionist said I had to re-fill out the paperwork…I told her I was not going to, and she repeated that I had to. I scribbled NO CHANGES on the front and threw the clip board back at her and said that was the best she was getting. I am usually a nice person, but given the circumstances I think I get a pass!

So, by the time I see the dr. I have to lay down to keep from screaming in pain. He comes in and asks if I want to sit up…I tell him no and he proceeds. He repeats the diagnosis, again in cryptic dr talk, so I ask him what resources I could go to for more information. He says to go to the Cleveland clinic web site and look up CIDP. There it was. A five year journey coming to a sudden SCREETCHING HAULT. If I had been standing, I would have collapsed. This is the point in a movie where the dramatic music fades away and you are left with a maddening silence. The silence lasts longer than anyone is really comfortable with, but there is no dialogue that can change the moment…CIDP. I have wanted answers for the last five years, but now that I had them I wanted to put the genie back in the bottle. CIDP. Chronic, Inflammatory, Demyelinating PolyNeuropathy. I remember reading that CIDP was like MS without the bike rides because it is much more rare. MS starts central and works it’s way outward…CIDP starts outward and works it’s way inward. CIDP. CIDP. CIDP. For the last 30 hours those letters have gone through my mind 1,000 times!

This is the cliff hanger that ends the second book of my life and keeps me on the edge of my seat to see what the third book has in store…As devastating as Good Friday was (Ironic that it was on Good Friday that I got the diagnosis…I guess that Good Friday was pretty bad for Jesus as well!), it actually answers a lot of questions.

My ankles quit working when I was 15…CIDP. I have had lower back pain on and off throughout my life…CIDP. What felt like a pinched nerve on and off throughout college…CIDP. The last two years of my streak I had many runs where I could not muster up enough energy to even complete the mile…CIDP.

My Dr. believes that I have had this since adolescence. That means that…I have become that ‘rock-star’ that I described a while ago in spite of CIDP. I ran every day for five years with CIDP. I have completed 5 marathons with CIDP. I have had a very successful career with CIDP. I have a phenomenal family, with CIDP. CIDP is an obstacle that I have been overcoming for many years…just because it has a name now does not meant that I will fight it any differently. CIDP does not define who I am…CIDP does not define who I will be…The wounds are still too fresh for me to understand that…but I am on my way. Stay tuned for the next book in my life. I do not know the outcome yet, but I hope to make it a story of thriving and surviving!

I'm BAAAAACK!

It has been a while. Things have been going good…The kids are growing fast, work is going great, all in all things are pretty good which is why I have not written anything in a while. The last time I went to the Neurologist he did not seem concerned. In fact, he said the next step was most likely the psychologist because it was likely stress related, or in my head. I know the mind is a powerful tool…but I also know that this shit is real. However, since it does not impact my motor skills, he said there was no reason to worry and to come back if things got much worse. Over a couple month period I felt the numbness slowly move from my foot all the way up to my knee. It had been about 9 months since my neurologist called me crazy, so I figured I would give it one more shot and if he still thought I was crazy than I would get another opinion. I also found some information on-line on Gluten intolerance, and some symptoms that sounded very similar to mine.

So, I scheduled a visit to the Neurologist and gave up Gluten. I was pretty gung ho on the Gluten thing…I finally found symptoms that related to mine, which means I could have found the source, and if the source is Gluten…well that would be Awesome to know! A trip to the local sprouts health food market and I was all set.

Then, at the Neurologist he decided to re-run some tests. The tests showed nerve deterioration, and from that point on the dr’s tone got a little more serious. At some point I realized that up until the point that the tests showed issues, he had no reason to believe that anything I described to him was true. By nature I am a sceptic of others, so I understand his point of view, but I never once thought that he did not believe me about the numbness until that point. I brought up to him the Gluten free angle, and he was fairly certain that it would have no impact, but it would not have a negative impact and placebo's have been effective for some things in life, so he said go ahead. He ordered a spinal tap ASAP…which is a critical step in diagnosing diseases like MS. There is an 80%-90% chance that, if I have MS it will show up on the tests. That also means that a negative test does not mean I am in the clear, but it will give me some peace of mind.

I am not sure whether to be happy or sad or scared. I could be two weeks from knowing what is going on, which would be a good think, except that it would mean that something serious is wrong with me. It has forced me to face the issue head on, and I am scared shitless. I have barely slept in the last week, and my mind is constantly racing at 100 miles a minute. All I can do is count the ticks on the clock until it is time to get my tests and get the results…Tick Tock Tick Tock…

Am I Crazy???

Does a crazy person know that they are crazy? I think Crazy is more of an objective measurement, so I think it is pretty hard to tell. Don’t get me wrong, I know I am not ‘eat paint chips and throw my own feces’ crazy…I think those people can tell by the strait jackets! When I got fat, there was a measurement that told me I was fat. Many people may argue with the BMI, but it does give us all a measuring stick with which to rate ourselves. Once I was well above the appropriate BMI I could not deny I was fat even when my wife would (lie, and) tell me that I am fine. There is no such measurement for crazy. In fact, history has shown that it is not that hard to ‘hide your crazy’. Here is what I know:

1.      I have symptoms that the doctor can’t find

      2.      I woke up from a dream and KNEW that I had MS, even though I had no idea at the time   what MS was
      3.      As a result of the dream, I self-diagnosed MS
      4.      Any time a new ‘symptom’ comes up I immediately jump to the internet and begin doing my doctors work
      5.      My doctor believes that the next step is the psychologist

When you add all of this up, it is hard NOT to determine that there is at least a hint of looney tunes going on inside my head. Maybe, just maybe, the first step to recovery from crazy is just like alcoholism…you have to admit you have a problem. So, I guess I will admit I am a little crazy. Now I have to find out if whatever is causing the numbness is making me crazy, or if the crazy is making me numb! Let’s go with #1 for now, and we will re-assess every year or so!

Sorry...again

I figured it out. I finally figured out why I am sorry! I am sorry that I have not trusted you enough to let you in on my concerns. We had a wonderful weekend presenting at Living in Love. We stood in front of a large group of people and talked about our marriage. How much we love each other, how great we are together, and the things we have learned over the years. Well, all this talking about a great marriage got me thinking that maybe I need you in my corner. So, I am not sure how or when, but I am going to find a way to break it to you that I may have something wrong with me. I am sorry it has taken this long, and I am sorry for potentially getting you worried about something that may or may not be wrong with me, but at this point I need someone in my corner…and you are always the one in my corner! So…here goes…

Autopilot

I was in a training class this week on presentation skills and as I stood up to give my presentation I was overcome with what I would classify as a mild sense of dementia. Now, I have no clue what dementia actually feels like, but I also do not know what else to call it.  I knew where I was, but for a brief period of time I lost the ability to process what was going on. I have had mild cases of this in the past, but the difference this time is that I was being recorded while the event was still going on. I took a look at the tape this afternoon, and I am amazed by what I saw...or more importantly by what I didn’t see. I did not see someone that was confused by what was going on or even mildly effected by some strange force. What I saw was…quite simply…me. I do not remember doing the things that I see in the tape, but everything I was doing was perfectly natural for me to do. I do not remember the words that came out of my mouth, but they matched very closely the words that I had written down when preparing for the speech. Essentially, my body was carrying out all of the activities that I would have been asking it to carry out had I been fully coherent…but in my mind I was not coherent. I watched the tape multiple times…I looked for anything that would show what I was going through. No blank stare, no dead eyes…just me, going through the motions, with no outward sign of struggle. I even cracked the typical SteveO joke here and there. I am not really sure how to take this. Like the numbness in my head, this is another issue that must be completely internal. Outwardly, I feel like it is a bright shining beacon that tells everyone that something is wrong, but in reality it is something that I will deal with internally…that does not impact my daily life other than to have me wonder WTF. I guess I will take it as a good thing. I can continue to ‘show no weakness’ until I figure out what is going on, and the world can continue to go on with me as-is, even though at times my mind may be elsewhere.

I have other ‘fun’ things going on as well. My vision has changed, which kind of scares the !@#$ out of me. I had a friend a few years ago who was diagnosed with a degenerative eye disease. I believe the diagnosis was that it could be 20-30 years before she had experienced real big problems. She was very distraught, but I did not really understand why. My thought at the time was, the consequences are so far off why would you spend time worrying about them now? Well, I really should apologize because I now understand! While touch, taste, smell and hearing are all important, Sight truly impacts everything I am and everything I experience.

My sight is not deteriorating or blurring…It is what I would call ‘graying’. I can still read and I can still see things far away. Sometimes I see double and really have to concentrate to bring the two images together. Sometimes I have to really focus to eliminate the ‘grey’ image. Think of it like those 3D pictures that you had to stare at forever to make the picture come into view. I now have to do that for most things. I plan on going to the eye doctor to see what he says…but I have learned to keep my expectations low.

Finally, A&M plays Alabama this weekend. I am looking forward to the game, but it is a cruel reminder of when all of this started. The ‘clairvoyant’ moment during the game last year was quickly followed by the ‘clairvoyant’ (or CRAZY) self diagnosis of a disease I know nothing about. I still do not know what is wrong with me, but since that day I can no longer ignore it or chalk it up to growing old. For some strange reason I am taking it pretty hard (I can’t even define what ‘IT’ I am taking hard…but never mind that). Anyway, I think I have my wife convinced that we need to watch the game at the lake with friends. That should take my mind off of ‘IT’ for long enough for me to relax and have a good time…and to see the Aggies BTHO Alabama 36-28 (no clairvoyant moment here…but a man can dream!)

Sorry!

Tonight that word really pisses me off. Not because I had to say it (I believe it is warranted). More because I do not know exactly why I had to say it. Is it sorry because I somehow caused this feeling that I have been having? Maybe sorry because I am too scared to go to the appropriate doctors to get a diagnosis on what is really wrong with me (don’t get me wrong…I have tried…my general doctor 4 times, neurologist twice, CT scan, MRI, etc.) Maybe it is sorry for the way I have been acting, but I feel that I have no control over that. Maybe it is sorry for not being able to have control over it. Is it sorry for not communicating all the things that are going on in my body. Is it sorry for trying to protect you from worrying about me? I think it is ultimately that…and I am truly sorry.

You raise me up and I raise you up…The one time I tried to communicate to you what was wrong, I could see you come crashing down…which ultimately would bring me down as well. So, like a proud dog trying to convince his owner he is not hurt, I have been downplaying the shit I am going through. I have given up on getting diagnosed with anything anytime soon, and I just pray that right now I am at the bottom and things are going to get better.

I ask you to not give up on me. Every day I will work my ass off to keep this from impacting our family. Some days I am successful, many days I am not, but I will wake up tomorrow and try again.

Of course, I cannot ask you that out loud…because nothing is wrong with me. I can’t tell you why I have been lazy…I have to let you go on believing it is a character flaw until the dr’s can give me a better reason. I have to hide my anger because the outbursts I want to have…need to have…are not fair to anyone but me.

Confusion does not begin to explain what I am going through. I have a very real fear that I am simply a hypochondriac, looking for symptoms that are not there. I truly do not believe that, but do crazy people know they are crazy? It sounds strange, but I want a diagnosis of something… because a diagnosis means I am not crazy.

So for now, I will just say I am sorry. You will believe that I am sorry for being lazy, which is a half truth…but it is better that way.