The Human Fund: Money for People

After waiting impatiently for a week, the Humira approval will not be happening before the holiday.  I will not be receiving my first injections anytime soon.  It's very unfortunate.  I'm sure it doesn't help that this week is Christmas and people are in and out of offices.  

I'm really not feeling well.  Yesterday seemed to be an okay day.  I was optimistic, even.  But today was miserable.  I had a hard time being out attempting to run errands for Christmas.  It's frustrating just sitting around, waiting.  I feel like I'm wasting time, and for what?  This is all too familiar to me.  I hate this waiting game.  I'm always waiting for something; procedures to be done, test results, medications to start working... 

I try not eating, but I grow weak and I genuinely enjoy cooking to get my mind off things.  Not eating allows me the freedom to get a few hours out and about.  But then I don't have the energy to actually accomplish what I need to do.  I eat, and then when I'm in and out of the bathroom, curled over in pain, or nauseated, I curse food.  It's impossible to find the in between.  I'm damned if I do, damned if I don't.

For now, I'll enjoy the next few days with family and friends. 

P.S.  How great is the Festivus episode of Seinfeld?

Update

I had the previously mentioned appointment with my GI today to tell him that the last infusion didn't do shit and that I am ready for Humira.

I feel good about what transpired despite still feeling blah.  The insurance approval will be done a lot sooner than I expected because I've already been on an Anti-TNF for so long.  They are thinking by next week the nurse will come to my house and show me how to administer the drug.  If I can convince her that I feel comfortable injecting myself, I'll be left alone to give myself the shots every other week.  They gave me A LOT of reading material, dvds, practice needles, ice packs, etc... I'm pretty comfortable and confident in this next step.

I also politely asked my doctor if he happened to prescribe a drug called Lomotil to his patients.  He looked at me like I was crazy for even hesitating to ask.  As much as I LOVED my doctor in Maryland, they were very much "old school" there.  I definitely understand their viewpoints but for the 3 years I saw doctors at the University of Maryland, they were very hesitant to prescribe this drug for me even though it helped me in the past.  The drug is basically like imodium, but on crack.  It slows up my digestion and helps with my spasms.  It does have a narcotic in it.  I think that's why some doctors don't like giving it out.  But if I just take ONE of those bad boys before bed I drift off into a nice sleep, usually making it through the night without waking up.  I once took ONE pill at a baseball game in Detroit and fell asleep in the stands.  Me?  Falling asleep at a baseball game?  That should give you an idea of how powerful the "may cause dizziness and drowsiness" part is.

The good news in all of this is that for the week after I received Remicade, I did feel slight improvement.  My doctor says this is a good sign because it shows I still react to the medicine before the antibodies get to it.  He got into a lot of talk about long term stuff.  Like what the next step would be if I don't respond well to Humira but I really don't want to think about that now. 

I'm just trying to stay hopeful that I respond quickly and positively to Humira.  I shall update after my first day!

Cabin Fever

I've been spending a lot of time indoors.  Trying to occupy myself with productive reading, baking, and television watching.  Yes, television can be productive.  I'm trying to remind myself that I only have to make it till Tuesday when I have my appointment with my GI to discuss (hopefully) me getting approved for Humira.  That thought in the back of my mind is keeping me going right about now.

I went out Friday night for a Christmas party and thankfully had no major issues.  I was a little worried being so far from home and drinking.  It's disconcerting just knowing you have a 45 minute drive home if anything goes wrong.  Thankfully I was with the right people and I had a few very minor issues.  I've been in this game a long time have become quite good at disguising when I don't feel well and making the most out of every situation.

I had lots to do last week and tried to get out of the house as much as possible but found myself very nervous.  I haven't had that in a long time.  Because lately, just when I've started to feel comfortable about being more adventurous, I'm hit with an emergent stomach crisis.  It makes leaving the house difficult.  Sometimes you drive all the way to your destination and just don't feel confident enough to get out of the car.  This is so far from the way I am when I am healthy.  When I'm healthy, I'm outgoing and always on the go.  I'm hiking in the park, taking Rudy for a walk, or sitting at the bar with my friends watching them get drunk.  It's hard not being that person.  And even harder when people don't seem to understand.

Sorry if all of this is vague.  I'll update everyone on Tuesday with hopefully good news about when I can get started with Humira.

Weak One

It's been a week since my infusion so I figured I'd update everyone on how I'm feeling.

I feel the same way I've felt the past couple of infusions.  A definite improvement from the week pre-infusion where I could barely sleep let alone leave the house.  I'm only waking up a couple times during the night but I'm just not where I need to be.  It's hard to describe.  I know I'm better but I'm not there.  Considering I received double what I normally get and at 6 weeks instead of 8, it's just not cutting it anymore.

I'm frustrated.  I haven't been able to run.  If I want to go out for a walk to keep myself in decent shape, I need to forego food for a couple of hours before.  I'm beginning to think I might need to walk the 13.1 miles in January rather than run.  Physically I'm not where I was before.  It sucks.

I think the consensus from most people I talk to is that mornings are the worst for people with Crohn's.  Those first couple of hours, your bowels are waking up, you eat breakfast, and you spend the next 4 hours in and out of the bathroom.  After that, if I stop eating I can make it through most of the day.  I swear if it weren't for immodium I wouldn't be able to do anything.  It slows everything down but you have to be careful how much you use it.  Like anything, your body adjusts and becomes immune to whatever benefits it offers.

Unfortunately my stomach isn't settled down until somewhere between noon and 2 pm.  By the time I can get out and take a hike or walk, it doesn't leave me much time before it gets dark.  Needless to say I feel like my training has taken a huge hit.  It doesn't help that our group sessions are typically very early in the morning where it is nearly impossible for me to be comfortable taking a 2+ hour hike.

I've told myself the past couple of times to just give the infusion a few more days to "take".  But it's been a week and if it's not doing anything at this point, it's only going to be downhill from here.  I know the process well by now.  I'll feel OK for the next 3 weeks and then I'll be back where I was before, needing another dose.

I go to my GI on the 16th where we will probably make the proper steps towards getting insurance approval for Humira.  I hope the approval doesn't take as long as it does for Remicade otherwise I'll be suffering well into the new year.  If anyone is interested, you can check out the link to Humira's website specific to Crohn's.  Here.  

That's all for now.

Infused

Today was the big day in which I received my Remicade infusion for possibly the last time. However, my hope is that my three year love affair with the mouse protein will not end.  I pray that the goodness will travel through my veins and tackle this flare up that has been plaguing me.  

Everything went smoothly.  I haven't been sleeping well lately so I've been a little more groggy and tired than usual this time.  Since I've been receiving double of what I normally get, it takes a lot longer to administer the infusion because of the increased risk of reaction.  Normally, after I take my pre-meds, which consist of tylenol and benadryl, the infusion itself takes 2 1/2 hours.  Today the whole process took about 4 1/2.  They have to infuse very slowly at first and keep an eye on my blood pressure, temperature, etc.

I'm trying to remain positive.  In the past, I never felt like I "needed" my next infusion.  Of course the 2 weeks before the treatment were always bogged down by heightened fatigue, but that was always manageable and welcome compared to the alternative.  The difference in my quality of life before and after was so minimal because my health was being maintained.  This time, I'm counting on the infusion to overcome much more.

I hope it works this time.  Sometimes I would notice the difference right away; other times it took weeks.  My next appointment with my GI is in a couple of weeks and if things have not improved then I think I am ready for the switch to Humira.  But I don't want to think about that now.

For now, my family and I are keeping our fingers crossed.  Either way, I need to get better.