To summarize, Jesus shows the woman the difference between normal water (life that the world offers) and living water (life which Jesus offers). He showed her that while the things of this world might satisfy you or make you happy for a moment, you will always be left thirsty. But the water and life that Jesus offers will completely satisfy, and that well will never run dry.

Michael used this, and verses from Jeremiah, to make the analogy of the toilet water of the world vs. the living water of God. We go to what is easy and simple and sinful in this life, but those things always leave us needing and requiring more. Our thirsts are never quenched, but we settle for it all the time because we either don’t know that there is something better, or we just don’t have the patience or trust to pursue what is better. Michael referenced a C.S. Lewis quote from his book, “Weight of Glory”:

“Indeed, if we consider the unblushing promises of reward and the staggering nature of the rewards promised in the Gospels, it would seem that Our Lord finds our desires, not too strong, but too weak.

We are half-hearted creatures, fooling about with drink and sex and ambition when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased.”

While he was preaching, it reminded me of a ski trip to North Carolina I went on with the Navigators in January of 2001. Over the MLK weekend that year, about 40 students and staff went up to Boone, NC for some skiing and road trip fun. Being from Wisconsin, and having to live with 6-8 months of snow each year, I didn’t really realize the possibility that many of my friends had never even seen snow before. They had grown up in Florida all of their life, and snow seems to be the one thing that doesn’t travel across the country to visit Florida every year.

It was interesting on the drive up as they would start to see snow on the side of the road, or a patch up on a hill, and their eyes would light up and they would take out their cameras to snap blurry pictures of random snow piles. But the thing that amazed me, and what was brought back to my memory last night, was what happened the next morning before we left for the ski hill.

A friend of the ministry had allowed all of us to stay at their large house for the weekend. We got in fairly late that first night, but for some, as soon as morning hit, the excitement level rivaled Christmas. They put on their winter clothes, whether that was actual snowpants, sweatpants, or just jeans and ran outside to play in the “snow”.

I put snow in quotation marks because for the 2-3 weeks leading up to our trip, the temps were in the 50s in Boone, NC. I knew that this would melt most, if not all, of the snow in town, but the skiing would be fine because they would have been making their own snow throughout the winter. So, I wasn’t very surprised when I went outside to see junk patches of snowbank and ditch snow, which Northern people will instantly recognize as “bad” snow. It has hard, dirty, crystallized chunks and in sparse patches, and shouldn’t even be classified as snow.

Yet, my Florida friends grabbed some sleds from the garage and were trying to slide down the slope of the yard which was only covered in a light layer of frost from the night before, just to crash into the junk snow at the bottom of the ditch. They seemed to be having a blast, and it was the first, and hopefully only, time that I’ve seen someone get grass stains on snowpants.

I was shocked, and was trying to tell them to stop and wait and explain how this isn’t, and shouldn’t be, fun. It was only going to be maybe 2-3 hours before we’d all be at the ski hill with real snow, and have a genuine ability to throw snowballs at each other, instead of the dirt-filled ice chunks that were flying through the air at the house. I knew that there was something better out there if they just waited. If they could just trust, there was better snow, more enjoyment, and greater fun to be had than with the current things they found themselves playing in.

As Michael taught how Jesus is desiring for us not to settle for the junk in this world, for ourselves, or for those around us, I realized how quickly and readily I wanted to tell people to stop playing in the fake snow, but how reluctant I am to tell people, especially myself, to stop playing in the fake life of the sinful aspects of the world.

God offers us that same unlimited source of life and joy that he offered the woman at the well in John 4. Any sense that we have of God putting restrictions on our life or saying, “Don’t do this/Don’t do that”, is simply because there are much better things for us to enjoy and pursue. I want to know Christ and enjoy his living water, but I need his help to turn away from the toilet water. That help can come from the Bible, or time spent in prayer, but often comes from my brothers and sisters in Christ. I also want to be used as an encouragement to others to know and love and desire Christ more deeply. The journey may be long and hard, but the destination will be totally worth it.

We made this long road trip so I could go for an initial consultation at the Doleys Clinic, a comprehensive pain center in Birmingham, Ala. This was one of the three pain centers suggested to me after my time at the Mayo Clinic in April/June. It consisted of three appointments, a 10:00 am with a physical therapist, a 2:00 pm with a pain psychologist, and a 3:30 pm with a medical doctor.

We ended up getting there around 9am, which was quite early, but it is hard to plan traffic for a 290 mile journey. I’m glad we did get there that early as they had the standard amount of paperwork to fill out, as well as a huge 370 question true/false exam. It is a standard psychological test, asking questions like, “I like to read poetry”, “I know that someone has it out for me”, “I like to gossip”, etc. Rob graciously helped me physically fill out a large portion of the paper work, including the entire psych exam. We went out in the hallway outside the office so we wouldn’t disturb other people, and I’d just lie on the floor and just rattle off the number of the question and either true or false. “182. true…. 183. false…. 184. false….” It took like 45 minutes.

We weren’t even done with the rest of the paperwork when I was called back for my first appointment. I met with Maureen Crocker, the physical therapist, and we mostly talked about my medical history for 15-20 minutes and then she gave me a brief physical exam. With the long road trip and the “physicality” of the paperwork I had already filled out, I was already really sore and uncomfortable in most any position. So I spent most of the time with her trying to find a comfortable position on her exam table and even the floor. She didn’t really tell me much or give me any directions or instructions, it was mostly just a fact-finding mission on her part.

In the couple of hours that we had in between my first and second appointment, we went and grabbed some lunch at Arby’s and also just rested out in the car in the windows down. It was a very nice day, not too blazing hot, and it was good to just relax a bit. We went back to the clinic by about 1pm to try and see if I could get in early. I wasn’t able to, but they did have air conditioning and the movie “Rio” showing on a continual loop on the waiting room TV. We had seen a couple of minutes of it prior to the first appointment, and as the rest of the day went on, we probably saw the whole movie two (almost three) times, though never all the way from beginning to end. It’s a great movie, and definitely recommend it. #gazebo-ebo

Anyway, on to the “main” appointment, which was with Dr. Leanne Cianfrini, the pain psychologist. She was really cool and personable, and really cared about my situation, despite just meeting me. She told us about the day treatment program and how it is structured and what to expect. It was lot of what I already knew, the types of classes and exercises to expect and how it is an 8-hour-a-day/5-day-a-week program and generally runs for four weeks.

This program won’t be doing too many things that I’ve never seen before, but rather will be able to better assess what things are working and what to continue. The physical therapy I had done in the past generally was a once a week thing where I met with the therapist for 20 minutes. They wouldn’t be able to see me on a day to day basis, and I probably didn’t know enough to see if there were minute improvements in my condition.

Also, the thing that I have struggled with the most is knowing when to press through stuff when it seems that something isn’t working. Like most people, I don’t want to be doing something that has no point or purpose, or that isn’t creating results. On the other hand, I don’t want to quit something just because it is hard at the time. But it is difficult from my position to discern which is which. I don’t go walking with a walking buddy anymore, because I wasn’t really sure that it was doing anything positive other than the enjoyment of spending time with a friend. I’ve stopped using heat or ice packs because they seem like a waste of time and effort with no positive side. I’ve stopped going to a friend’s apartment complex to swim in their pool because while my time in the pool is relaxing and enjoyable, I feel that it is just undone with all the pain and discomfort created by the getting ready/driving/walking/post-game shower/etc. The close and persistent supervision of this program will be better able to assess what pain is simply pain and should be pushed through, and which is actually harm and should be tapered off.

A direct example of this came in the middle of this appointment. When I came in, I looked at the couch and saw it was fairly short to stretch out on, and the chairs didn’t look comfortable, so I asked to lie on the floor. She let me, and her carpeted rug is one of the most comfortable things I’ve laid on in a long time. Though later she said that despite it being comfortable I should try and not lie down as much as I do so that I can engage my core muscles and stave off any sort of atrophy. So due to her challenge, Horizontal Man’s days might be numbered, if only because she’s “making” me use chairs more often now.

The one thing that she did bring up that was new information was that I had the opportunity to break the normal four week program into two two-week chunks. One of the downsides with this program that we’ve known is that they require payment at the beginning of each week of treatment. So I felt I would need to have enough money for the whole program before I ever start, or else risk having to stop halfway through. However, they do have it set up to have that be an option. However, it isn’t as simple as doing two weeks whenever I want, and then come back for two weeks whenever I want.

This is because they wait until they have a small pool of people before they start each program, so that there can actually be a group for group therapy. They tend to have one program each month, and the next one is starting on September 12. So, for example, if I were to do the 2-2 split, I could do the two weeks at the start of the September program, and then wait until their next program, which would probably start some time in October, wait until the final two weeks of that program and rejoin to finish the overall four weeks of the program.

That option sounds great, since we are going to have to do a lot of fundraising for me to go to this program. It costs $2500 a week, and that doesn’t include housing or food. I don’t know what possibilities are out there to stay with a family for my time there, or some other way to help with expenses, but once we sort of decide on specifically when I’ll be going, we can cross those bridges.

Going for the 2-2 split enables me to start treatment with a smaller pool of money, and hopefully, after just those initial two weeks, allow me to work more at my part-time online job and start progressing back to being normal. However, if I were to do the 2-2 split starting in September, I doubt I could do my second two weeks in October as I’ll be in weddings on the weekends of the 15th (sister, Jen) and the 22nd (Rob Hodges). They don’t know when the October program would happen, but it is possible that their final two weeks would be during that time, and I’d need to wait until the final two weeks of an even later program to finish everything. I don’t know if that would be as good, if the two-week periods are separated by 10+ weeks.

The final appointment was with Dr. Christopher Hill, their medical doctor. This appointment ended up being the shortest of the three, but because it was so late in the day, he started running behind and it was almost 5:30 pm before I was seen.

Most of what we talked about was a continuation from my time with Dr. Cianfrini. She had brought up additional medication possibilities, both for when I attend the program, and also things I could start now if desired. The drug that she wanted me to start trying right away is called, Savella. It is one of the three main medications for fibromyalgia, the others being Cymbalta and Lyrica (which I have tried with no success).

I knew about Savella, as a couple of other doctors and I had discussed the possibility of starting it over the past few months. The reasons we had not tried it were mainly financial, but also medicinal. The drug would be very expensive, my co-pay running $50/month. And being unable to work, or make enough money on my own to pay even my basic expenses, that sort of financial burden would be difficult to take on. So, I would voice these concerns to my doctors and ask if they feel the drug would be worth that financial investment. Each one would say that while it is a new drug that possibly could help, and has helped many others with fibromyalgia, they don’t feel so confident that this one will do so much better than the others that have failed, especially when it would be such a financial burden for me.

So I told that same story to these doctors, and Dr. Cianfrini said that they can just give me a bunch of samples so that I can try it for free and see if it is effective or not. Since that removed the one main reason why I wasn’t taking it, I decided to accept her advice to try the Savella. Even though I’m not super-optimistic that it will work where all the others have failed, it is still worth doing. It’s not that I thought the drug was dangerous or bad, I, and my doctors, just didn’t think it was worth $50 a month. And if they are going to let me start out on it for free to find out if it works, then sign me up. Dr. Hill was the one to further explain the medication and its possible side effects and the process of gradually working up to the target dose.

Savella isn’t a drug where you can just start and stop at any time, it requires a progressive increase and decrease. Because of this, the samples come in two-week starter packs. They explicitly lay out what should be taken on what day and at what time. It starts out with a small pill once a day, then on Day 3 you move up to a small pill twice a day, then progressing to a medium pill twice a day on Day 5, finally reaching the target of two large pills twice a day by Day [9]. Dr. Hill said that they’ve seen that patients see better results if they actually take to starter packs and progress up the dosage even slower. So, what I’ll be doing is taking Day 1 of pack one, then the next day taking Day 1 of pack two , then Day 2 of pack one, and then Day 2 of pack two, and so on. It is intended to allow for a better acclimation to the drug, and lessening the negative side effects.

As you can see, there are a lot of decisions that I need to be make with my “financial team” of friends and family to figure out what is the best option. My family in Wisconsin, and my friends in the southeast will be putting together plans for fundraising in the coming weeks and months. There are a core group of friends that are helping on a monthly basis with my basic expenses, but there are hopefully other friends and acquaintances that would possibly be willing and able to help with this one-time event of going to the pain clinic. I’ll be posting more information on that in the future if you are interested in helping in any way.

Thanks again for your prayers and support in all of this, and also reading this 2100+ word blog post. It’s been a long road, and will probably be a long road ahead, but I couldn’t have made it, then or now, without the support of my friends and family.

I’m embarrassed that my friends have needed to create a coalition to help me.

I don’t really understand what they will get out of it.

I think it is a terrible investment on their part, I can’t ever repay them for it.

I feel that I don’t really have anything to offer.

I often wake up disappointed that I didn’t die in my sleep.

I find myself getting angry and upset much easier now.

I make bad decisions when I’m angry.

I have a strong urge to say, “I’m sorry”, whenever I interact with anyone.

I feel trapped within my own body.

I feel that I don’t know what to do to ensure the approval of those who are “taking care” of me.

I don’t know what I can do that would have any positive outcome. Everything feels useless.

I’m almost 30 and am much less self-sufficient than when I was 18.

I feel like I’m letting a lot of people down.

I wish I would have some sort of permanent severe problem (paralysis, terminal disease, etc.) because having the carrot of “better” dangling in front of me for 2+ years is getting tiring.

I’ve pretty much given up on ever having a girlfriend/marriage/a life involving any of “that stuff”.

I’m really excited for what CCF is doing on the FSU campus. I’m just trying to stay out of the way.

I’m finding it hard to be happy for people lately, or have feelings of empathy or sympathy.

I want to write this blog post, but feel that it is useless, and hate that it is causing pain, which is keeping me from “more important” things, which seem equally useless and cause just as much pain.

I have that same circular thought process about anything and everything.

I’m not suicidal, despite anything I’ve written above.

I just wouldn’t stop anyone if they wanted to mug me/shoot me/etc.

I’m upset at myself that my thoughts and feelings are so fickle and negative. I seemingly don’t know how to latch onto truth and believe it forever.

______________________________________________________________

God is still faithful. [Lamentations 3:22-23]

God is somehow moving in the hearts and lives of people because of the junk going on in my life. [Tommy Schorer, et al., 2 Corinthians 1:6-7]

God still loves me and will make me whole some day. [Philippians 3:21]

God promises that all of this will work out for my good. [Romans 8:28]

God isn’t surprised or caught off guard by my lack of faith or physical failings. [John 2:25, Acts 15:8]

God has always met my needs, and he will continue to do so. [Philippians 4:19]

God has a better idea of what my true needs are, not my selfish view of what I feel I “need”. [Matthew 6:31-33]

God is not disappointed in me. [Ephesians 1:3-4]

God wants to use me in telling his story of salvation to his people. [2 Corinthians 5:20]

God isn’t done with me yet, or he would have taken me home already. [Philippians 1:25]

God continues to forgive me when I run away from Him and his truth and his guidance. [Psalm 32:5]

God isn’t an uninterested bystander in my life, He is keenly aware of what is going on and is right here to help, assist, love, forgive, and guide me. [2 Chronicles 16:9, Matthew 28:20]

God has no buyer’s remorse for having purchased my soul at the cost of his son, Jesus. [Josh Frabitore, Isaiah 53:10]

God will be worth clinging to even if I never get physically or financially better this side of heaven. [Psalm 84:10]

God won’t dump trials and sufferings on me in such high amounts that I can’t take it. He will always provide a way out. [1 Corinthians 10:13]

God never said this life would be easy, in fact He said that in this life I would have trouble. [John 16:33]

God knows that this trial will only last for a short time. That might mean 1 year, 10 years, or 100 years. But that is such an insignificant amount of time on the scale of eternity with Him. [1 Peter 1:6-7]

God can help me overcome the inherently selfish thoughts that inundate my mind, “I this……, I that…”, and put them in line with the things God says about me. [2 Corinthians 10:5]

Josh is a senior at FSU, and preached the sermon at CCF’s weekly meeting tonight. I didn’t even want to go, as I continue to fight my own issues of self-worth and feeling as though there’s no point for me to do stuff out in public, and also because “pursuing” Jesus hadn’t been working for the last couple of weeks. He preached on suffering and it was awesome, and it was based out of Mark 4:35-41.

I had even read that this morning. Just like I had read other bible passages in recent days. And other Christian books, blogs, and articles to try and feel like I am worshipping God. And for whatever reason, it hadn’t been working. It was like I was using the wrong tool for the job, or trying to invent a spiritual experience or something. I don’t know what it was, but I didn’t like it, it wasn’t how my relationship with God had felt in the past, and I didn’t know what (if anything) I could do about it.

One of the points Josh made was really eye opening, and it had to do with artistic contrast. He talked about how the shadowy parts of paintings are just as important as the light parts, as the light parts are shown to be that much brighter in contrast to the darker areas. He compared that with how God is painting his picture of life and history and that God isn’t afraid to paint with the dark colors, the dark times, the storms and pains to bring his children to a deeper love and knowledge of Him. And the encouraging part is that the darkness we face isn’t too dark for him to lead us through, the pain isn’t too intense to keep us from showing the light of his glory.

Thinking over all of this made me realize that my problem was mostly that I wanted to be a different “color”. I didn’t want God to continue to be painting my life with shadowy colors, I wanted something else. And honestly, at times would just want the painting to be done, regardless of how it looked. But, for reasons that still don’t make sense to me, God is touching people through my life. I don’t feel like I have much to give or offer to people or society in general, especially these days, but I still get cards/emails/facebook messages about people praying for me or how I’ve encouraged them and everything.

I’ve never wanted to be famous or important or leave a legacy or anything, but something that is part of my nature is that if I can do something so that someone else doesn’t have to, I’ll do it. And so, in a way, maybe I can spend this extended season of suffering and trials so that others don’t have to or they can pursue Christ more deeply. I don’t know.

But all of these thoughts I’ve been thinking, and messages I’ve been processing from God and Josh’s sermon, etc., haven’t made things “better”. I have more peace, but my circumstances haven’t changed. Even as I was praying before going to bed, which prompted me to get up and start writing this blog entry, was that God isn’t trying to convince or persuade me that “bad” is “good”. He’s not trying to tell me that apples are oranges, or that red is yellow. This isn’t a mind trick of believing that physical pain is good, or that severe financial trouble is good, or anything else, as though the power of positive thinking makes things better. Apples are apples, red is red, bad is still bad, but God is good. Pain is still real, and is prevalent today, but God is sovereign.

Is this easy? No. Am I going to feel differently when I wake up in the morning? I hope not. Do I know this is the truth? Absolutely. My color palette might be dark for a while, or it might turn bright and colorful tomorrow, or there might not be much canvas area left. Either way, God is good and faithful and knows where the storm is taking me. I just need an occasional kick in the pants.

These days, a saying that runs through my head a lot is, “If you don’t have anything good to say, don’t say anything at all.” But if I’m already introverted (not saying much to begin with) and if not many of my thoughts are good ones, then I’ll never say anything to anyone. And that’s probably bad. So this is I guess an attempt to combat that, or embarrass myself, or both, or neither, or √3.

Life’s a struggle. And I know that there are people that have things much worse than me (which makes me feel worse because I’m such a wimp an unable to deal with my privileged life). But the constant physical pain is just soooo draining. I can’t escape it, I can’t relieve it, I can’t medicate it, I can’t pray it away….. And due to “Doing Anything = More Pain”, I just don’t want to do anything ever. It also seems as there is no upside to anything. Either it is pointless (TV or internet) or painful (everything else, including the first two). It genuinely makes me feel like my life isn’t worth living and that I’m just taking up space until I die or Jesus comes back. (Which, honestly I was hoping he would come back last week. I could really use a rapture right about now.)

And though I know that sounds depressing, which it is, I’m not super-depressed like I was back in 2004-06. I’m not suicidal or anything, but just despairing and lethargic, I guess. Nothing ever seems to have a positive outcome. I do nothing and maybe just watch TV = being a useless 29 year-old bum who isn’t living his life. I do the dishes and maybe a load of laundry = intense pain in lower back and arms for the next 3-4 hours, probably requiring me to stop all activity and just take a nap. And maybe due to my increasingly pessimistic nature, it is very rare that anything I do or that happens to me makes me able to look at it in a positive way. The last thing that I’ve done that seemed to only have had an upside was when my friend Liz invited me over to a game night with her roommates, boyfriend, and other friends from school. It was a blast and enjoyable and I made some new friends. Then as an after party, some of us went and played Mario Kart 64. (For those of you scoring at home, I’mma Wario and I’mma gonna wiiiiiiinnn!!) Though sadly, that was like two weeks ago.

I have done some fun things since then, a friend from high school came into town, but hanging out was more painful than I had hoped, and due to their visit happening at the same time as a home baseball series, it made work that much more painful and uncomfortable. So it made me doubt if those, or other, activities were worth it on that particular weekend. I’ve even tried joining a bible study, but with given 9 days to do a book overview, I was only able to read 5 chapters and fall asleep listening to the audio version of the rest of the book. Then at the study a couple days ago, I couldn’t survive the icebreaker before having to lie on the floor, and then only lasted about 20 minutes before I had to go home. Kinda the same reason I dropped out of D1 last semester, and will possibly/probably drop out of this too. I feel like such a failure.

Which is something I referenced in my post yesterday, but failures (both awake and asleep) are things that continually bombard me. Obviously, I am keenly aware of my material failings and inability to work or play sports or read or do much of anything else that has any purpose on this planet. But then going to sleep doesn’t give me a respite either. And my “skill” of having super realistic dreams means I feel and endure all of the emotions therein. Fights with friends and family, being chased by the cops, being neglected by people, running around trying to find something/someone and never attaining it, getting lost in some building, losing a race or competition, having relationships fall apart, hearing parents say they don’t love me or never enjoyed playing with me, etc. These types of dreams happen every night, and often multiple times a night. So there’s not much of anything I can do to escape from my real or perceived failures.

Though the biggest failure I have is failing to know how to take/understand/believe encouragement. And I’ve had this problem for a very long time, quite possibly my whole life. People tell me they are encouraged by my life and that my life matters, and audible words and written letters and typed out messages along those lines don’t seem to make any sense to me. I got a letter recently that when I read it, I honestly thought it was mistakenly addressed and was really for someone else. The things said couldn’t be real or true or accurate towards me, but in actually knowing the author, I know that they wouldn’t just make that stuff up for fun, so apparently it is true for them, but I don’t know how to make that stuff true for me.

And obviously, my relationship with God has suffered recently, otherwise I wouldn’t feel this way and would have joy and hope and everything else. I know he has promises for me, but those don’t necessarily mean that they will come to pass in a day, or a month, or a year, or 15 years, or 59 years, or until after I die. Also, knowing that God is perfect and holy and sovereign and passionately pursuing me makes me know that the problem is squarely with me. Anything standing between me and God is specifically my fault, and something I’m either doing or not doing. I’m not praying enough or properly, not reading the Bible enough or properly, (and in light of the first two options and Galatians 3:3) knowing that I can’t “do” anything to get God to love me more, so then I don’t know what should happen. Lather-Rinse-Repeat. Every time I sit, or more realistically lie down, to pray, the only things that come out of my mind or mouth is “I’m sorry” and/or “I’m a screw up”. And then there’s usually not much more that happens until I either fall asleep or get distracted/frustrated and go do something else.

So I guess that’s sort of my life. I do things that don’t really matter, make and eat meals that physically hurt, drive places and buy gas with money I don’t have, do things that cause pain, waste money on meals at restaurants because I don’t want to waste energy and time and pain cooking at home, try to do things that are enjoyable but realize that I should actually be working or serving or living instead of being a bum and going into mindless amounts of debt.

I apologize for being whiny and verbose and pessimistic and depressing and anything or everything else. You know where and how to find me if you want to do anything, or you can just come over and hang out with me and the cat. We can watch movies and/or StarCraft 2 together.

Peace out.

It’s kinda crazy that it has already been about a month since my last post and my trip to the Mayo Clinic. I at least wanted to send out an update, to let others know what’s been going on, and also just to remind myself of what has been happening.

First off, nothing’s really changed physically. After trying to implement some of the tips and techniques that I was told in Jax, nothing has tangibly gotten better. My days aren’t populated with much, and what I do find myself doing still hurts just as much as it did before.

Not really sure how to textually describe the rest, so it might just come out rapid-fire, bullet-point style.

- Started the CPAP machine again. I had stopped using it before because I didn’t feel it was helping me sleep or breathe or anything, and it was just uncomfortable. But after seeing how bad my pulse oximetry test was at Mayo, I realized I needed to give it another shot. It is still uncomfortable, and I still don’t sleep any better than I had before. Although, there was a night about 4-5 days ago where I slept for like 6 hours straight. It was amazing. As in, it felt great until I rolled over and realized my body is still in pain everywhere.

- Dreams are still “bothersome”. Like a tweet I posted this morning, I seem to be doing a lot of moving in my dreams. Last night’s examples included: driving down the wrong side of a freeway with my sister because she was trying to escape the cops because she was transporting a football sized amount of cocaine; jogging back to FSU campus from going to church at Crossbridge, though I always had a big yellow semi-truck driving beside me; skiing through a very wooded area in a race and ended up taking the wrong path (I went downhill when I should have turned to go uphill), and as I tried to go back up to the right path, I found a bunch of discarded frisbees in the crook of a tree; ended up at the lake at the base of the Tallahassee dam for a swimming competition, where I came in fourth in my heat (Yes, I know that is a fictional place); and lastly, chased some of my high school friends around FSU campus because I thought they were here for a tennis camp, but I couldn’t ever catch up with them (literally or figuratively). Failure is also just as prevalent of a dream theme as “moving”, as it never seems like anything goes well in my dreams. Well other than like when a female friend professed her love for me in one a couple nights ago, but at least that helped me to know that it was actually only a dream instead of reality, which I guess is the third problem I have (and have documented at length, I believe).

- Swimming. I was told by my pain management guy that swimming would be a good thing, and so I’ve tried to add that into my week. I usually go once or twice a week to a pool at a friend’s apartment complex, though I don’t know that I have any friends that live there anymore. I usually go around 6pm, because it’s not as hot, nor it is busy. But I don’t know how much it is helping, as it takes me about 30 mins of round trip driving, which has its own amount of pain involved. Like it feels great to be out at the pool and floating around and stretching. I’m not going to try and convince anyone that I don’t enjoy an 89 degree afternoon dip in a pool in sunny Florida. But I don’t know what kind of improvement it is doing, nor if it outweighs the walking, travel, and such involved in getting there and back.

- Neurofeedback. After getting back from Mayo, I went to my next appt and we discussed how the treatment had been going. There had been some progress, some of the brain waves levels had gone down, but not significantly. And definitely not $50/week worth, (which is my co-pay). She told me that there was some other things she had wanted to try with me, but that because her normal equipment was in the shop, she couldn’t do it right now. It is something called a “Beta Reset”. She wasn’t sure when she could get her stuff back, but said that we should just take a break until she can get her equipment, and then I’ll come back. So there’s that.

- Insurance fun. So I’ve submitted the paperwork from Mayo to CHP to see if they would pay for my time over there at the end of April. I called them a few days ago to check on the progress, and the person told me that everything was there and under review, but that they have up to 30 days to make a decision. So hopefully I’ll know something on that front in a week or two. If they approve, that would not only be cool for the Jax Mayo trip, but also set a precedence so that they might pay for the comprehensive pain center treatment at the Mayo in MN. If they don’t end up covering that, I can’t really go, because it would cost about $30,000 out of pocket. I’ll keep people posted.

In completely other news, my writing style is slowly becoming approved. In this article by Slate, they talk about how it is more accepted to have punctuation happen outside of quotation marks. It allows me to still be “funny”.

Back to live action. So Friday, my final day, started out with the much anticipated financial rep meeting at 8am. I knew there could be many different options offered, and tried to be ready with questions and possible decisions based on how the conversation went. The rep said that Dr. McIntosh wants to wait until I attempt the ICN with my insurance before he makes a decision as far as charity care goes. Since I actually do have insurance, but they just generally don’t allow people to come here, if I can get them to agree to that ICN, then they would rather do that first instead of granting the charity care. But if the ICN fails, then they would take a look at charity care. So the remaining bill ended up being about $6,400, and so I asked about payment plans. She said they didn’t have anything as far as “structured” payment plans, but she asked how much I could possibly pay each month, and I said probably $200-300. So she said that if I paid half of the remaining balance now ($3,200), I’d be able to make monthly payments on the rest until it was paid off. And she gave me some envelopes in order to make those payments.

So that’s what I agreed to. I asked if the ICN fails and the charity care is an option, would I be able to have that be retoactively authorized as well, and she said she wasn’t sure. Normally, they approve charity care for subsequent visits, but if my continued care were to be back in Tallahassee as opposed to Mayo, then they might be able to authorize this visit to be covered and I might get money back. But she wasn’t really able to confirm that I could expect that option. Again, much like with my physical problems, my financial problems seem to be things that no one has seen before and are unsure what to do with.

After that, I went up to see a spine pain specialist. I met with him and we talked about my X-ray and MRI results. He said that I did have some early degenerative disc problems in my low back, which I knew already, but nothing else really looked too terribly bad or out of the ordinary. There were some other discs in my thoracic spine that were minimally protruding, but that, and any of the other “anomalies” that they found are statistically present in like 70% of the population. So just because they are there doesn’t necessarily mean that they are a problem or should cause pain.

We talked about a spinal cord stimulator, and he doesn’t feel as though it would be a good idea. And honestly, my pain management doctor back in Tallahassee has recently thought that it might not be a good option either. We had continued to pursue it because we didn’t really know what other options to try to get pain relief. But with the diffuse, spotty, widespread pain that I feel everyday, a spinal cord stimulator isn’t going to help with that. Those devices are for more acute and localized pains. So it might be an option in the future, if after my other treatments I get everything under control except my left leg just always hurts, then a stimulator might be able to help mitigate that pain. However, when I have pain everywhere, or at least any parts of my body that I happen to be using, a spinal cord stimulator wouldn’t really be the best tool for that job.

Then, what has been one the most enjoyable, and very unexpected, things happened. As the spine pain doctor was walking me back to the lobby, the pain psych I saw earlier in the week walked by. In our discussion back on Tuesday, he knew that I worked in the Athletic Department at FSU, and tapped me on the shoulder and asked, “How ’bout Ponder going to the Vikings, huh?” And so we started chatting about the draft, and how Ponder would fit in at Minnesota. He asked me what I felt about Ponder’s fragility, and I said that he’s fine when he’s not trying to form tackle guys running an INT back to the house. As we were talking about all of this, my spine pain doctor over hears, and comes over and we end up chatting about football and the draft and other sports things for like 5 minutes. It was really fun and cool, and the levity of it all made me forget that I was in a hallway of exam rooms at a hospital. It was just a fun time of guys being guys.

Then it was a brief intermission to go back home, grab some lunch, pack up the condo, and drop the keys back off at the Kuder’s before wrapping up my time in Jacksonville with my appointment with a sleep specialist.

The sleep specialist appointment went about as well as I could have thought. The pulse oximetry test that I took on Tuesday night showed that I still have significant sleep apnea and need to try and get that under control. I did one of those tests with my pulmonary doctor in Tallahassee back about 6-8 weeks ago, and they said they’d call me with the results but they never did. As I had been getting the same quality of sleep with the CPAP as I did without it, I didn’t really feel motivated to pursue the results of that test. But now I’ll go back and try to keep pursuing that and make sure to find a CPAP pressure that works for me, or some other way to get some quality sleep. He gave me a medication to try and sleep through the night, in hopes that it could help me from waking up every 2-4 hours. He also said that there was nothing to be done about the crazy dreams, as a lot of that can stem from the anti-depressant that I am on. So unless I can find a way to stop taking that medication, there’s not really much to be done. I just have to hope my brain keeps things low key throughout the night.

So now, I just sit in the lobby and finish up this blog post before heading on the road to get back to Tallahassee. Looking forward to being back in town and sit in DP’s awesomely comfy chair, even though I’ll probably have to share it with Sam. I don’t generally mind it, but he has a keen sense of knowing what he would need to do to be in the way if I’m trying to watch TV or use my computer. Hopefully he didn’t throw up in my room while I was gone. Again, thanks for reading and praying and caring and calling and texting and everything while I was over here. As things change moving forward I’ll keep making posts.

So I arrived around 6:40am to queue up for my financial meeting. I was hoping that I’d actually be able to talk to someone instead of the run-around and pass-around feeling I had gotten from my first two days there. So I was relieved when they actually called my name and I went back to talk to a representative. She had what looked like to be my final bill, and it totaled $20,130, well, minus the $12,668 I’d already paid, so $7,462. (The reason it is higher than the previous ones are because those were estimates, and I guess the X-rays weren’t calculated in the original one.) Her first question is if I wanted to pay the rest of that on Friday. Which at least was a good sign that I didn’t need to pay it immediately, and that there may be an opening for discussing charity care and payment plan options.

I brought up my concerns of legitimately not having much money, and the money we did have to offer to pay these bills with were credit cards and debt. We started discussing the charity care options and she brought up the ICN (Individual Care Negotiation). I don’t think I’ve mentioned it before, but it is a way for people, whose insurance doesn’t cover their members to go to Mayo, to get an exception to that rule and have their insurance still pay a portion of the costs, and possibly all the costs. I had known about this option prior to coming over here, and had tried on multiple occasions to have them send me this paperwork, as I was told I should have that on file prior to my arrival. They never ended up mailing me the paperwork, so I thought that avenue was closed off. I mentioned all of this to the representative, and she said that it wasn’t too late for that option. I can still take the ICN back to my insurance in Tallahassee and see if they would still agree to it. They can retroactively authorize me back to before I was even seen. In that event, Mayo would file a claim for the entire amount, and if CHP paid more than what was left on the balance, I would actually be able to get a portion of the $12,668 back that I have already paid.

This was great news, yet, they wouldn’t really let me leave on Friday until we had something in place for my remaining balance. So she talked about a possibility for charity care that would need to be authorized by the first doctor that I saw, Dr. McIntosh. If he feels that I have seen as many people as I could have “in-network” and that it semi-required me to go out of network and to receive his services, then he would be able to give my charity care in the way of writing off a percentage of my bill. She wouldn’t really say what probable percentages that could be, but it sounds like it could be anywhere along the spectrum, just whatever he feels like granting me, if anything. So the rep said that she’d send a note up to Dr. McIntosh and that him and his administration would have a decision for me by my next financial appointment on Friday.

She then added that even if he doesn’t grant me any sort of charity care, I should be able to qualify for a payment plan for my remaining balance. She gave me a ballpark number of like $200-300 a month, but said that she couldn’t really be sure of what the arrangement could be because of other variables that would need to be figured out by Friday. Long story short: Prayers have been answered in that we’ve been able to delay payment of this 20 grand visit, there are probable payment plans, possible charity, and possible retroactive coverage by my insurance (which could result in getting money back). Go Jesus go.

From there, I went up to the second floor to meet with the Opthamologist (eye ball doctor). It was the most subdued and normal appt so far. Did an eye test, still had good vision. Did other tests, and passed those with moderately airborne colors. Nothing really seemed out of the ordinary, it’s just that my eyeballs hurt. The doctor said that my eyelids are slightly inflamed, but other than that, he didn’t see any sort of damage to the eye or retina or anything to explain what was going on. He said that it should go away in a couple of days. They then gave me a pair of paper sunglasses which looked awesome when I went shopping at Publix later that day.

I got out of that appointment fairly early, around 8:15am. My X-rays weren’t until 2:30pm, and I had just planned on going home and napping or resting until then and coming back. But since the X-ray place was just down the hall from my eye doctor appointment, I thought I’d go down and see if it would be possible to squeeze in early so that I could be completely done for the day. I checked in and the receptionist made a call to the back and then said that they’d be able to see me and to take a seat. I assumed I was now “on standby” of sorts, like I was on Tuesday, and might be there for an hour or so. I had some things I could do and catch up online while I waited, but if it was going to take too long, I would end up just leaving and revert back to my original 2:30pm appt. But only after about 5-10 minutes, they called me back.

After getting changed, I was taken back to the X-ray room where I spent the next 45+ minutes. Part of it was due to the machines acting up in various ways, but mostly it was because they needed to take SO MANY PICTURES! When I had gotten any X-rays of my neck since my surgeries, it would usually be about 2-3 images. One from the side, one from the front, and an occasional one where I have an arm extended above my head. (Not sure what that last one tells them, it just seems like it put more bones in the way to muddle things up.)

Anyway, for this X-ray session, we were going all out – just like Zach Meredith. Neck/mid-back/lower back were all fair game. Some from the front, some from the side, some at a 45 degree angle, some with arms above my head, some bending my neck forward/backward, some bending at my hips forward/backward, some standing, some lying flat on a table, some on my side on the table, some on the table with random foam blocks shoved around and under different parts of my body, etc. It was crazy. And then even after that was done, they had to analyze them to make sure they were good enough, and lucky for me I only had to re-do a few of them. Sadly, they were the most painful standing/bending-type ones. But I got them done, and was victorious in ending my day early.

So I head out to the car to head home and get some food and get some sleep. I forgot about the pupil dilation from earlier and so everything was super bright and I had to bust out my sweet paper sunglasses. I figured the easiest way to wear them was to put them under my normal glasses. Like this. Yeah, I know, SO hot right now. I needed to get some food for the remainder of my stay, so while slightly looking like the Terminator with reading glasses, I went to Publix. Got some food, got some weird looks, got the job done. Then it was go home, and go to sleep.

It was great, to be able to just relax and not be walking all over Mayo, sitting in waiting rooms, being poked and prodded, but I could just sit and do nothing and eat some Starburst Jellybeans .

“Day 4″ will actually be Friday, as Thursday will consist of more nothing with a sprinkling of hanging out with the Kuder’s (this time with Dan, too!) mixed in. Thanks for the love and prayers and support and texts and everything else. I’ve really appreciated them.

To start off my afternoon session, I met with a pain psychologist. We talked about how I had been coping with this, what a normal day is like for me, and just discussing the stressors that chronic pain causes. (Also, it was cool that in talking about where I was from, he said his wife is from St. Croix Falls. So, he knows “my people”.) He said that I seemed to be dealing with the stress very well, as stress is one of the main pieces of the “Chronic Pain Cycle”. It starts with pain, which leads to reduced activity, which you obviously want to try and stop doing whatever is causing the pain. But then that leads to deconditioning, meaning that you get out shape and leads to increased fatigue. The pain and fatigue then leads to depression and increased stress, which can create muscle tension which hurts and is painful. And the cycle can start all over again.

The desire is to stop the cycle and any of the points so that you can escape from it. One of the ways that he feels would be most beneficial for me to do that would be to enroll in a Comprehensive Pain Rehabilitation Center. It functions a lot like the Meier Clinic did for my depression back in 2006. It’s a three week program, where you are at the center 5 days a week and 8 hours a day. There’s physical therapy, group therapy, sleep therapy, stress management, behavioral therapy, biofeedback and many other treatments offered and administered while you are there. Everything happens on site and it is a place to be focused and try to get my body’s chemistry and pain processes to revert to some default settings, or at least begin that trek, so that I can re-enter society in a greater capacity.

He said that the only one of those centers in Florida is located in Miami, while there is one located in Rochester, MN, at the Main Mayo Clinic campus. I wasn’t sure, and didn’t think to ask until later, if those are the only ones in the country, or if those are the only ones that seem feasible to go to (currently living in FL, and my parents live a couple hours from Rochester). He said that he will be starting his own center in Jacksonville at the Mayo campus, but he probably won’t have it up and running until at least December 2011. I haven’t been able to fully look into either option yet, as far as all of their details and pricing and anything like that. But that will be a project for the coming days. He gave me big packets of information on each facility and what each offers and what all is involved.

A small side-trip after that appointment was to pick up a pulse oximeter to take home for the night. I’ve done these tests numerous times, but for those that may not know, it is a device that goes on the tip of a finger to measure the percentage of oxygen in the blood, as well as the pulse. I wear it while I sleep, and they will use this data to try and see about my sleep apnea, or what could be causing my sleep disturbances. I’ll know more about the results of that during my sleep consultation on Friday.

After that was my Nerve Conduction and EMG tests. I’ve had these multiple times before as well, so I knew what was coming. Which is helpful, because the nerve conduction test is comprised of sending fairly intense shocks through your body, and the EMG literally is sticking a needle in your muscle(s) and wiggling it around until it makes “noise”. Ok, neither of them are just that simplistic, and there’s a method to the perceived madness. Let me explain. The nerve conduction test is used to measure nerve velocities. Which means they can track how fast the signals are traveling through my arms/legs/etc. They put some sensors on the top of my foot and then send shocks in my ankle, back of the knee, bottom of the foot, and other places until they find how much energy the nerves will allow (their capacity) as well as the speed it takes to transmit the shocks (their velocity). The sensors are hooked up to a computer, so they can record speed, and then they use a tape measure to calculate distance.

As they increase the shock power to find the capacity, it can be pretty painful. But it just reminded me of growing up on the farm with our electric fences for the cows. I’d been shocked by those hundreds of times before growing up, and so this wasn’t so much different. Although, I didn’t normally get shocked 100+ times a day as a child, and the technician wouldn’t let me use a blade of grass to minimize the shock. They did all of this on my leg and ankle, some on my hip, and also on my shoulder/forearm/wrist. They thankfully only needed to do it on one side of the body.

The EMG is another test that they use to test nerve quality, but it involves sticking a needle in a muscle to pick up the electrical signals produced and that then gets translated into a sound wave. Readings are taken at various body sites, similar to the ones for the nerve conduction, and also while the muscles are relaxed and then again when they are contracted.

I honestly have no idea what they are looking for, or how they find it with this EMG test. I was able to watch the technician’s screen for the nerve conduction test, and I could at least make some sense of what was going on, or what she was looking for when she needed to take multiple shocks at the same site. She was looking for the electrical waves to settle out and normalize and then that can then tell her something once it gets analyzed later. It didn’t make complete sense, but I could at least see how it could make sense to someone. With the EMG, it wasn’t like that at all. He’d stick the needle in and some noise would come out the speakers and very erratic waves would flash on the screen. And the wave would travel from one side of the screen to the other in like 1/10th of a second. There was just a crazy amount of waves refreshing on the screen, no wave anywhere near to the one before, with random sounds coming out the speakers and then the neurologist just casually says, “Ok.”, and moves on to a new site to repeat the crazy process. I couldn’t even imagine what all he was looking at or what it could be telling him, it was almost like watching a static-filled TV station and somehow knowing everything. But that’s why he makes the big bucks I guess.

That was it for Tuesday. Wednesday isn’t as big of a day (Financial rep, Opthamologist, and X-rays), and I should be able to send out that post soon. Hopefully by tonight.

Anyway, Day 2 started off dark and early at 6am as I left the condo to make sure I had parking and was early enough for my financial meeting scheduled at 7am. Strolled in around 6:30am and met with a woman at the registration desk who, after taking my information, looked puzzledly at her computer. (Not sure if I just made that word up) But she asked me why I still had a partial balance and I told her the crazy run-around story from Monday. She had me sit back down in the waiting area while she talked to her supervisor. After a few minutes, she came back out and was working on her computer (didn’t call me back up, not that she needed to) and then started talking to the receptionist next to her. I couldn’t hear everything, but I believed they were talking about me and my situation. It sounded like the lady who allowed me to just pay a partial amount on my total balance did something completely outside of protocol. Not sure what that means for me, or her I guess.

The supervisor ended up coming out and telling me that I was good to go for the day, and to continue in my schedule as planned. I asked her if I was still going to see a financial rep today and she said that there was no need to see anyone today, but to just attend my normally scheduled financial rep meeting on Wednesday. I double-checked just to make sure I didn’t have a repeat of Monday’s fun, and she said that everything was cleared for today, and just to follow the itinerary as scheduled. So I did.

That led me to the 2nd floor Rheumatology department. I had an “appt” at 7:45am to be a standby patient to see a doctor. That meant, just like being standby for a flight, that I would just hang around until a cancellation happened. Or if in the event that everyone showed up, they’d just tack me on at the end and see me when they could see me. Thankfully, due to my punctual nature and shortened “financial” meeting earlier, I was actually checking in at 7:15am and ended up being the first person to be put on standby.

So I found a corner of the waiting room, an outlet, and plugged in my computer to connect to the “outside world”. I’d occasionally check fb/twitter/email/etc., but was mostly bored as 7:15 turned into 8:15 turned into 9:15 turned into 9:48 when I thought I heard someone call for “Scott Morak”. (Which seems to be what I go by here. Only one person so far has seemed to see the “i” in there and at least get close to the pronunciation.)

I stood up and wasn’t entirely sure I heard them correctly, so I asked “Scott?” Not really in an inquisitive tone, but rather like I was trying to get the attention of a random Scott. I’m not sure why I didn’t create a more grammatically useful question or have at least more words come out of my mouth, but that’s all that seemed to happen. Also, I don’t know if it was just the acoustics of the room, or the comparative quiet of the area, or my penchant for having a booming voice, but when I said “Scott?”, it was unnecessarily loud. Like I was announcing “Yes, I am the one that was chosen! It is I!!!” I just failed big time all over that.

Once taken back to the room, I met with the doctor. He was really cool and was able to adjust our conversation as we went along once he knew that I have moderate intelligence and experience with some of these things and so he didn’t have to dumb stuff down for me. It was a really cool interchange. He expressed how chronic pain works and spreads and persists. One of the main aspects is a physical change in the chemistry of the brain. Pain can be a self-perpetuating cycle where the body conditions itself to receive pain as those pain neurons are continually stimulated and strengthened to the detriment of the body’s normal processes to inhibit pain.

He mentioned three main ways that are used to help the body re-learn how to properly regulate those chemicals and allow my body to respond to pain in a more “normal” fashion. Those are mild exercise, behavioral changes, and good sleep. He was encouraged that I had already been taking steps in two of those areas, with my walking regimen (exercise) and having “buffer” times between shifts of activity and being able to schedule my day so that I don’t get too burned out (behavioral changes). The sleep, as most people know, is an ongoing battle, and I’ll be meeting with a sleep doctor on Friday to try and figure out what I can do to hep build the third leg to that stool.

He gave me a big packet on fibromyalgia (which I haven’t had time or energy to read yet – like 40 pages), and I’m not as standoffish to the term as I used to be. Maybe because when it was initially given, I felt it was just flippantly diagnosed and that it created problem with my insurance. But regardless of what I really feel I want my “disease” to be called, it is all going be addressed using the same techniques and directions from this point forward.

I’ll go ahead and split Day 2 into multiple posts at this point, I’m already up at 1,000 words. The rest of it should be posted tomorrow.