The Man Who Was Saved By A Mouse

Years back I found an article online while researching Remicade and Crohn's.  The article was appropriately titled, The Man Who Was Saved By A Mouse, written by Robert Mason Lee, a journalist and Crohn's sufferer who was among the first to receive Remicade when it was still a new and unknown drug. 

I read this article and immediately printed it because I found it to be one of the most honest accounts of Crohn's Disease.  I passed the article off to friends and family.  I've probably read it 15 times since then, mostly in my darker times when I needed a reminder that there is a light at the end of the tunnel.  

Lee describes the symptoms of this illness in a way I have never been able to convey to friends.  You see his progression from a person who will do anything to cope with the pain of Crohn's to someone who is finally able to truly live.  When he describes the changes he feels after his second Remicade infusion, you can really feel his joy.

Anyway, the article is quite lengthy at 6 pages of PDF but if you can get past the first page you'll enjoy it.  It's a great story and accurate depiction of chronic illness.  

The Man Who Was Saved By A Mouse

Snow Days

I woke up today earlier than usual.  Around 12:30 I made my way downstairs and heard the truck.  Ahhh, the FedEx truck with my medicine, Humira.  Dancing around my living room ensued while my mom answered the door because 1. I looked a sleepy mess and 2. The guy probably would have thought I was crazy if I had answered the door grinning from ear to ear.

I've read the books, watched the dvds, and played around with my pretend pen syringe for weeks.  You better believe I tore that box open and got crackin.  I let the medicine warm up, but probably not enough because the first two injections to my thighs stung like hell, an indication that the liquid was most likely still too cold.  I took a little time out to let the syringe warm up and the next two which were injected into my stomach with less stinging.  

And just like that, it was over.  No trips to the hospital, no 4 hours of waiting, no IVs, no drowsiness from being put into a benadryl coma.  This medicine is without a doubt more convienient than Remicade and it makes me hopeful about the developments in medicine for the years to come.  I'm so effing happy everything got figured out with this treatment.  Now we just wait and see.  

When I first started Remicade in August of 2005, it took many many weeks before I even saw a difference.  I would say it wasn't until month 3 when I really, really thought to myself that this medicine was changing my life.  Humira works the same way in regards to the time frame they give you to start feeling well.  It's the little things in your quality of life you start to notice; being able to sleep through the night without waking up, walking into a mall and not being paranoid about having an "attack", being able to make plans with friends with the confidence that you will actually be able to follow through on them...

Hopefully over the next couple of weeks I'll be telling you all about some of my adventures with friends, the consumption of delicious food, and binge drinking at the bars on Frankford Ave.

So I've got 15 days until my next two injections.  After that it's one injection every 2 weeks.  Let's hope things get better between now and then.

Quick Update

Once again, a new turn of events.

Friday I was supposed to start Methotrexate and literally minutes before my sister was coming to inject me, I got a call telling me to hold off because there was a loophole discovered in my insurance that might make Humira possible.

So I waited all weekend and they called today telling me that if I get Humira through the mail, they can bill it directly towards my medicial health insurance rather than my prescription coverage.  I don't get it.  I don't understand how weeks of talking to health insurance people, nurses, and pharmacists over the phone and no one until now discovered this.  But whatever.  The people from the prescription company called today to set up delivery for Wednesday.  And magically, I am 100% covered.  So WEDNESDAY!  The day I have been waiting for.  Hopefully nothing else crazy between now and then happens.

The saga continues...

My free Humira aquired from the patient assitance program arrived at my doctors office today just as I received a phone call from my doctor telling me he has a different course of action he wants to pursue.  Basically, after my three free months of Humira expired, there was no guarantee that I'd receive any type of assistance to continue treatment.  Financially, it would make no sense to start the medicine without knowing if I'd be able to continue it.  

He was very concerned about my red eyes.  They have been red and swollen for about a week and a half.  I was using a pink eye medicine that was doing nothing, but it burned when I used it so I figured it had to be doing something.  So tomorrow I have to see an Optomologist at Urgent Care to figure this out.  Just thinking about making the trek to the hospital is disconcerting. 

He presented me with a couple of options, his preference being for me to start Predisone (steriods) because I have responded so well in the past.  I quickly refuted this idea because I've been much worse then this before.  You might think I'm crazy for not wanting to take a medicine that I know is going to work.  However, years of steriod use gave me Osteopenia in my hips and lower spine.  The side effects of steriods include acne, moon face (looks like you've just had your wisdom teeth pulled), insomnia, depression, night sweats, mood swings, etc.  In that Chris Cornell song when he sings, "Is this the cure, or is this the disease?", I'm pretty sure he's talking about steriods.  It's pure misery.  I remember my first year at Maryland being on steriods and crying hysterically in the middle of campus because I missed the bus back home.  Yea, there'd be another one in 10 minutes, but when you are on steriods, the smallest things can set you off either way.  I'd like to think I'm doing a public service to my friends and family by not taking them.

So the course of action we are going to proceed with is as follows.  I'm going to begin injections of Methotrexate starting Friday.  It's an older medicine so it will be affordable.  This medicine inhibits the production of folic acid which is somehow connected to the production of the DNA that causes inflammation.  I might not have worded that well but it's all confusing to me.  It's used primarily in patients receiving Chemotherapy and I've been on a similar drug in the past called 6-MP.  6-MP, by the way, did absolutely nothing for me.  The side effects from this medicine are suppression of the immune system, nausea after injection, and possible liver damage.  So every couple weeks after I start it, I'll have to have lab work continuously checking my liver functions.

The other medicine I'm going to start is Entocort, similar to steriods but less powerful and without the awful side effects.  I can take this orally.  He also mentioned considering Tysabri which I talked about here a couple months back.  

The most frustrating aspect is that Methotrexate is a drug in which you won't feel the affects of until 4 to 6 weeks in.  So here I am with yet another waiting game...It never ends.

Sick and tired...

If I was in any sort of denial before about how sick I was, the past couple of days have certainly been a reality check.  I'm weak, nauseated, tired, and aching.  I feel like things have gone from bad to worse in a short period of time.  But then again, denial can do that to you.

It's been a downward slope since September of last year and it's all catching up to me now.  Every action is hard.  My whole body aches.  I'm taking two hour baths, not because I enjoy them so much (which I do), but because I spend about half that time mentally preparing myself for the daunting task of getting out, brushing my hair, and putting on clothes.  Sometimes I fall asleep on my bed before I accomplish any of them. 

My appetite is no where to be found.  But I'm forcing myself to eat because I know that not eating is the fast route to the hospital.  Once you start rapidly dropping weight, the hospital isn't far away.  I'm trying to drink a lot of high caloric drinks.  I'm drinking Ensure, Carnation Instant Breakfast, and Gatorade to replenish my electrolytes.  

I wake up at least 10 times during my five hours of "sleep".  It's usually my stomach kicking me out of bed telling me to get to the bathroom.  Sure enough, as I stand up and make my way to the loo, I'm scaling the hallway walls with my hands to guide me because it's impossible to stand up without getting lightheaded.

All I have to say is thank God for my mom and sister.  I've been like a freaking baby the past couple of days and they have done a wonderful job taking care of me.  For now I'm trying to stay positive.  Hopefully I'll have a Humira update soon.

This is effed up

The past 24 hours have been filled with lots of tears.

I won't lie; my parents pay the bulk of my health insurance every month.  I don't have a big girl job therefore I count on them to foot the bill for what is a ridiculous amount every month.  Health insurance ain't cheap, especially when you need to have the best plan available.

So it came as a surprise to me yesterday when my pharmacy called to make sure I knew that my first Humira dose was going to cost 4000 dollars.  After I fronted the 4 g's, I'd be reimbursed by my health insurance company for half that amount.  2000 dollars?  For the rest of the year, I'd have to shell out 1500 monthly, being reimbursed half the amount again.  No big deal right?  Basically, the two weeks I waited for approval was so they could tell me, "Have fun figuring this one out."

When you are an individual who decides to purchase health insurance, even when you have the highest, most expensive package, you do not receive the same benefits as someone who has insurance through their employer.  Employers are able to negotiate the terms of insurance, etc.  Therefore they can apparently get things for their employees that even an individual just trying to keep themselves healthy cannot purchase.  I'm just learning this because I've only been on my own policy for about a year and never really had to get expensive prescriptions.

The shocking aspect to me was that Remicade, which I was previously on, is the same price as Humira.  However, it is administered through outpatient at the hospital.  Why then, can I not receive the SAME type of drug that I received for free in the hospital, at home?  What benefit do they receive from me being in the hospital when I get treated?  I understand it, but at the same time, I don't.  If I were to continue down this path without effective treatment, I could end up in the hospital possibly having surgery.  I guess in the long term, surgeries and hospital stays once or twice a year are cheaper than giving someone a good quality of life.

Luckily the nurse at my doctor's office has been extremely helpful in terms of working this out with me.  It's a bitch.  I have to apply for a couple of patient assistance programs, one of them offered through Humira, specifically for people with health insurance who aren't totally covered.  It consists of lots of paperwork, which is going to delay this process even longer.  Because Humira is a newer drug, they want people to be on it.  This specific program offers the most substantial aid in covering my co-pay and it's good for one year.  After that year is up, who knows?  Maybe this year is the year they discover the cure.   

Finally

So after pretty much harassing my doctors office with phone calls the past 3 days, I finally received a call back about the Humira insurance approval.  It was approved!  There's too many damn people to deal with in that doctors office. 

The good news: I will be able to pick up Humira at my pharmacy later today or tomorrow.  It's just like any other script in that regard.

The retarded, effed up, "I don't get it" news: I still haven't received a phone call from the home healthcare company that is supposed to come out and show me how to inject myself.  The nurse at Penn said I probably won't be scheduled until next week.  Bummer.

After researching online and even according to Humira's web site, it doesn't appear that home healthcare visits are a standard practice for patients receiving it.  They bombarded me with literature, dvds, and even a sample injection "pen".  They have a hotline for people to call if they have questions about injection.  So really, why the eff did I even look at these things when some lady is just going to show me how to do it anyway?  Seriously, the "pen" they have designed for injection has a pen-like nub at the top, you press it, and THERE, it's in.  On top of that, my mom is nurse who administers these things to patients daily. It's frustrating because I've been through SO much in terms of taking care of myself after surgeries, etc.  At this point, an injection is a joke.

So now I'll play the next waiting game (it never ends) and I'll probably open my fridge up 20 times a day to look at my box of Humira chillin in the fridge until I can actually use it.  When the home healthcare nurse calls, I'm going to inquire if it's possible for me to give the injection myself.  Maybe I can finagle my way out of her coming and get this sucker in me before the weekend.

Here is the pen:

The top red part is what you press when the white part is against your stomach or thigh.  See the nice arrow and everything?  It's pretty much idiot-proof.  Well maybe I shouldn't speak too soon...

Not only is my colon swollen...

My eyes are, too.  

I get eye infections ALL the time.  And mouth sores.

Just some other lovely aspects of Crohn's.  Mouth sores and flare ups seem to come hand and hand.  When they say Crohn's is inflammation from mouth to bum, they aren't lying.  The worst part is, pink eye or mouth sore medicines don't really do anything because they aren't treating the actual condition that is causing them.  I can apply topical stuff but that only helps for so long.  So until the Crohn's inflammation is under control there's not much to be done.

My eyes have been freakish for the past couple of days.  I wanted to accompany some friends to the bar tonight for quizzo, but I couldn't find sunglasses.  I'm sure no one would have noticed, but I would have felt self-conscious.

Other, non-intestinal side effects of Crohn's can include:

• joint pain and arthritis
• gallstones
• osteoperosis (I have osteopenia, slightly less serious whose affects can be reversed)
• gallstones
• anemia
• blood clots
• liver damage

That doesn't even include all the side effects from drugs used to treat the disease.  Anyway, that's it for now.  Still waiting for news on the Humira front.  Unfortunately, I enjoy watching TBS which has subjected me to viewing the damn Humira commercial with that woman eating her tomato salad over and over again.  Well, hopefully soon...

Just in case...

Here is the link to my fundraising page.  In case you lost it, or don't see the link to the right on this page.  Once again, I deeply appreciate all who have donated so far and anything you can contribute to this cause is recognized with much gratitude from myself, my family, teammmates, and the CCFA.

Out with the old, in with the new

"There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says 'Morning, boys. How's the water?' And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes, "'What the hell is water?'"

I'm constantly being prodded with the question, "So what have you been doing with yourself?".  I hate this question.  For the past couple of months I've pretty much been held hostage to my illness.  On the exterior, I do not appear to be sick, and I'll be the first to admit I'm far from the lowest of the low.  But still, many of my goals this past year have been put on hold because of my health.  It's frustrating because just when I am on the verge of complacence...BAM...I'm hit. 

During my three month internship, I experienced a level of health and overall well being I could not have not imagined.  I learned a lot and came to many realizations about some of my goals.  Like most things I find important, I kept these things close.  My mentality of internalizing my goals has been justified throughout the years as I have experienced much disappointment at the hands of illness.  It's easier to internalize.  I don't have to explain to people later why it is I couldn't get that job I wanted or canceled an engagement I'd been looking forward to for months.

Case in point: I applied for a job back in June.  I told a few close friends about it.  I got through the first testing phase and subsequent interview phase.  I had to get in ridiculous shape for the job.  And I did, despite my setback in June when I was hospitalized for a week.  But by the time the next phase of the interview process rolled around, I was too damn sick to even go to travel the two hours to where I needed to be, let alone participate in the process.  A couple weeks later when someone asked me how everything turned out, it took every ounce of strength to not break down right there.

And then there's the half-marathon, which I originally created this blog for.  When I decided to do it, I was running 6-8 miles about 5 days a week.  Now, I'm probably going to have to walk it.  To me it's another defeat and although I should be proud of what I'm doing, it's that very pride that's getting in the way.  I can't just be happy with doing something amazing for a charity that means so much to me.  Instead I'm thinking about the fact that I'm not doing it on my OWN terms (running) but now I have to walk.

The other day someone I'm not particularly close with said to me, "I can't imagine what you go through every day."  I replied, simply, "Thank you."  End of conversation.  And you know what, that made my night.  Most of the time it's the simplest gesture of compassion that makes me feel not so alone in this.

This all sounds like a pity party and I hate pity parties.  I'm conscious of the fact that I've been in the midst of a wild one for the past couple of months.  I know life is too damn short to be feeling sorry for yourself all the time.  This is something I need to work on.  

You'd think after seven years it would get easier.  Looking back, I can't definitively say that it has or hasn't.  But I know for sure that from this moment on, it will.