Yet another medication ...

Valeen and I are headed up to Denver in a few minutes for my first infusion of yet another medication that I'm hoping will work.

This one is administered via IV; it should take about 2.5 hours.

More details to come, but please pray that this one works — like for reals works.

I'll be back here later to let you know.

Yet another doc [[follow up]].

The appointment went well yesterday. We really liked the new doc and felt comfortable with him. Afterwards I felt really encouraged and hopeful ... this morning I was tremendously discouraged.

The doc prescribed a new injectable medication called Enbrel to replace the one I'm now taking (Humira). He said he likes it a lot better than Humira. He said he's seen better results. I'll have to inject myself once a week (I'll continue taking MTX as well). He had some samples, so he gave me two pre-filled syringes. Yesterday was my injection day, so I took one last night. He sounded pretty confident that it would work.

I asked him how long it usually took if it worked, and he said most people feel results the same day. So I went to bed really excited about the possibility of waking up feeling so much better, but this morning I woke up just as in pain as ever. Could barely walk.

That was really tough.

Maybe I'm overreacting. Maybe it'll still work, but this is so discouraging. I dreamt all night about waking up and not having pain ... and then I woke up.

I was (am) having a really tough day; I'm not dealing with all this very well. My pastor, Danny, unexpectedly stopped by the office and said he wanted to pray for me this morning. I'm not sure how/if he knew I needed that today, but that was a blessing.

Thank you for caring and walking beside me in this journey. It's tougher and longer than I'd like and than I expected. Because of the fact that people have their own lives to worry about, my plight has (seemingly and understandably) fallen off most folks' radars. Thank you for continuing with me. It means a ton.

Yet another doc.

I failed to mention yesterday that I have a doctor's appointment today. This is significant because I haven't seen any doctor since our trip to Reno last year.

Since that trip I've been corresponding with Dr. Fong in Reno by phone and email. It has become a difficult relationship to maintain though. At Dr. Fong's suggestion Valeen and I began looking for a Rheumatologist to see. Dr. Fong is a great guy and very knowledgeable in his particular field of medicine, but rheumatology is not his field of specialty.

So, we're going to see a new doc in Denver today. Please pray with me that with new professional eyes on the situation will come a new treatment plan—one that will show results. Right now I just need results.

Despite it all, God is good.

One year ago today I started treatments at the clinic in Reno, Nevada.

You know how with most things in you life you can look back on experiences later and truthfully say, "It's hard to believe it's been a whole year!"? Well I can't do that. Not truthfully anyway. This has been the longest year of my life. Literally every single day has been a painful challenge to navigate. I'm not complaining. Just reporting. [[By the way, no complaining ≠ no pain.]]

Many times in life I wish that God would give me the whole picture. I wish He would give me a bigger perspective and show me the future. If, one year ago, God had let me know that I'd be in this much pain still today, I don't think I would have been able to handle that. Emotionally. Mentally. Physically.

Sometimes I guess it's good that God only lets us see so much.

Looking forward, I don't think I could last another year like this. There's so much that I want to do. There's so much that I feel God has placed in my heart that I'm not able to do in this condition. But focusing on what I can't do does me no good. I'm learning to focus on what I can still do. Last year I didn't think I could take the pain one more day so I went to Reno. Apparently, I could take the pain a whole year 'cause here I am. Still in it.

My guess is, that even though I'm pretty sure I can't do this again for another whole year, come April 27, 2011 if I'm still in pain, I'll still be here. Still doing what I can do. And if this past year is any indication, I'll be a heck of a lot closer to God than I am right now. And who can complain about that?

Oh, and either way, on April 27, 2011 I'll have an almost one-year-old little girl. That's insane. Despite it all, God is good.

Starting to work?

I took my first dose of Methotrexate (MTX) on Tuesday, February 16. I took my first dose of Humira on Wednesday, February 17. They're both weekly medications at this point, so I'll do the same thing this week.

I think I felt a little better this week. Not a ton better, but a little better. Obviously, that's not drastic improvement—or else I'd know for sure—but it's better than nothing. Any improvement is good.

Please pray with me that the improvement this week will be more significant, specifically that it'll be enough that I feel comfortable beginning to begin tapering off of the Prednisone.

Here we go again.

If you're still here then you still obviously care, and I thank you. Your love and support is more than I could ask for. I am blessed.

This has to all be a very confusing mess for those of you out there reading these sporadic updates and trying to follow along. It's confusing enough for me. Let me give you the 23 second full synopsis, and then conclude with the details on the most recent developments:

• I have RA
• I used to take drugs to control it (Methotrexate [MTX] & Humira)
• The drugs worked
• The potential side effects of the drugs scared me
• I quit taking the drugs
• The RA began kicking my pants
• I tried everything I could find or think of (within reason) besides drugs
• I went to a specialty clinic in Reno for 6 weeks
• It didn't seem to have lasting positive effects
• I came home and I kept trying stuff
• I went back to Reno for 2 more weeks
• Still not improvement
• I started taking steroids which worked but caused wicked side effects
• I backed off the steroids almost down to nothing
• I remained in really bad shape
• I started on Humira again for 6 weeks
• Nothing happened
• I've had to increase the steroids again just to function
• I just talked with the doc again this week and decided on the next step ...

Are you ready for this? Drumroll please .... the next big step in this insane plan is ... Humira and MTX. Yup. You heard me. Back to the exact same two drugs that I was originally on in the first place before I started all this mess a couple years ago.

There is some reasoning here—I'll get to that in a minute—but let's just dwell on the irony for second. There is this funny bit in one of Jerry Seinfeld's stand up routines where he's talking about horse racing from the horse's perspective, and the horse, after having run his butt off as fast as possible all the way around the track, stops, panting, looks around, and says exasperatedly something along the lines of, "Here!? We were just here! That was the longest possible route we could have taken!" Hmmmm ... it's funnier when Jerry does it ... Anyway, I feel kind of like that. It's ironic that if I could turn back the clock to sometime around October 2007, I'd find myself happily bumbling along in life taking Humira and MTX for my arthritis and feeling fine. And here I am in February 2010 beat up and broken down and exhausted and discouraged and confused and panting and exasperated looking at the "new" protocol for treating my arthritis ... which is Humira and MTX. There's a lot more to the story, I know, but honestly, it kinda feels like this was the longest possible route we could've taken.

Okay, so with that said, the deal is this: The Humira obviously isn't working on its own. I've had no improvement. All of the medical literature out there supports the notion that Humira's efficacy is greatly increased when taken in combination with MTX. It used to work for me, but that was when I was taking them together. So, it would seem that maybe the reason the Humira isn't working for me this time around is because I've left out the MTX. Maybe. I guess we're about to find out.

There's a little more to the story than that, but basically, that's it. I'm back to trying what worked for me before because nothing else that I've tried has been effective. There is a part of me that is very worried that this isn't going to work either (it's a pattern that I've grown accustomed to over the past 13 months), but I'm still hopeful. In fact, I feel very antsy and full of anticipation. I'm SO ready to feel better that I can't even explain it.

I can't wait to feel 'normal' (if there is such a thing). I can't wait to NOT hurt. I'm SO done with this battle right now. I woke up from a dream a couple weeks ago and was unexpectedly really upset after realizing that I was running in my dream, and that was something I hadn't done in almost a year in real life. I hate running ... or at least I used to while I was taking everything for granted, but not anymore. I can't wait to run. I can't wait to go work out. I can't wait to ride my bike. I can't wait to pick up our daughter when she arrives in a few months and not hurt. That's the goal right now. There have been other goals along the way. There have been other sacrifices, but right now the goal is to stop hurting.

So, the meds should arrive sometime next week I'd guess. I don't know how long it'll take for them to start working, but I'll keep you posted. Please pray with me that God uses these to give me some relief for a while. It's not what I set out for originally, but I just need a break.

Still not working.

The Humira never worked. I took all 6 injections. The doc told me that we're gonna have to try something else, and increased my level of steroids in the meantime.

I'm not sure what the "something else" is, but my guess is Remicade or Enbrel. I don't know why either of those would work if the Humira didn't, but I need something to work. My ankles have been killing me for over a month straight. I can barely walk 50% of the time and I've got to get off these steroids.

The last last resort that I can think of is to go back on the methotrexate again ... but I guess we haven't gotten there yet. The doc has confirmed how toxic the stuff is, and I guess we're trying everything else first.

I'll let you know ...