Entyvio Part One

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So after being sent a bill for $29 grand and many phone calls with my insurance company and financial assistance, I received my first infusion today.  I honestly was really dreading it to be completely honest, I had heard about bad infusion reactions (not longer term side effects) and seeing as how I seem to get every side effect to every drug… It made me nervous.

Apparently, I was right to be concerned. Right after the infusion I felt like I was tired. Halfway home, the fatigue was bad enough that I didn’t want to drive anymore. Shortly after that, headache.  You know, the ones that border on a migraine.  As of a few hours ago, bad joint pain.  I hopped into a support group I joined, specifically for people on this drug and asked.  I guess this does happen and as I had already heard, it lasts a couple of days.

I guess I’m just grumpy about it.  Think about your worst hangover, multiply it by 3, and make sure it lasts.  I get so irritated by the fact that some of the medications I take have more side effects than my Crohns Disease does symptoms.  At least beyond these loading doses, I’ll only have infusions every 8 weeks, but boy is this going to suck in the meantime. 

I really hope this drug works, and works long term.  I could use a break in my medical life… everything else is great, just need my Crohns Disease to get with the program.

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Infusions and Awareness Week

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Mouse Juice Time

                       Mouse Juice Time

December 1-7th is Crohn’s and Colitis Awareness week.  It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion.  As you can see from my expression up there, I’m not having a good morning.  I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up.  It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears.  I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.

I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early.  I had thought my appointment was at 9am, however it was set for 10am.  All the rushing around, and getting anxious being stuck in the bathroom for nothing.  Sitting in traffic I about lost it.  I did lose it after having to stop at a gas station on my way in to use the restroom.

So here I am.  After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm.  Whatever works I guess.  He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand).  At least he’s willing to get creative.  However, being stabbed repeatedly isn’t my cup of tea after a rough morning.  ::Sigh::

I’ve been doing alright lately.  I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious.  Most notably was a loss of appetite (I like my food dammit) and hair-loss.  The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome).   I figured screw it.

After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly.  Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp.  Welp, here I am.. still kicking on Remicade.  Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp.  I’ll argue my case later with my GI.  If Remicade ultimately fails, I’m still up for trying that new medication, but whatever.  Take it as it comes.

One of the things that really, really gets to me, is the fatigue.  I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day.  Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up.  I think that’s the most frustrating part of it.  Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired.  I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.

This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease.  I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost.  All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more.  It’s hard explaining to people that it’s more than a tummy ache… over and over again.

No matter what you explain, or how many times you explain it, the social effects are… depressing.  I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident).  I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium.  I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”.  The fact that I use up my spoons some days before I even make it into my clothes just pisses people off.  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

It could be worse though, and has been worse.  Most days I’ve been managing to keep a positive outlook, some days though it just sucks.  Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading.  Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less.  Some days, even my online support network can’t even get me out of a funk.  Either way, the best thing to remember is that those of us with IBD are not alone.  It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.

Days like today?  Where I used up all my spoons before I put my shoes on?  I’ll make it, you’ll make it, and things will get better.

Chronic Illness: Take a good look at your life

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A lot of things change when you’re diagnosed with a chronic disease.  The emotions alone, the emotions that you have to endure when you find out that you have a disease that you will have to live with for the rest of your life, the emotions are devastating.  My life seemed to halt when I left the hospital for the first time with a brand new, shiny diagnosis.  I had already gotten over the shock I fell into when I finally had a cause for the weight just falling off of me, for the pain for the past year.  I walked out of that hospital, and life stopped.

Since that day, 5 years ago now, life started back up again.  I purchased a house, divorced and then finally started to settle down again.  I’ve been working the same job for almost 3 years now, life is stable, calm, and most definitely moving forward.  However, it’s not the same.  Since I was diagnosed I have moved on with life, but it seems like my Crohns Disease partially dictates what decisions I make.  I plan around and for my Crohns Disease, both in what I want to do tomorrow, and what I plan to do in 10 years.  Crohns Disease is part of my life, there for it has a place in my plans.

Life is a bit different now.  I plan around infusions that I need every 8 weeks, I make sure to fit in all of my appointments for each doctor, which trust me, I have quite the handful now.  It’s not really bad though, it’s just different.  Some parts that have changed?  My outlook, how I take care of myself.  I try my best to follow a healthier diet, I get some moderate exercise, and stay away from things that I know will set off my disease.  I’m working on cutting down smoking, eventually to quit, and I’m trying  my best to keep to a stress free life.  Without Crohns disease, I’m not sure if I’d work on my own happiness, work on keeping stress out of my home.  It takes a lot of work, and there’s a lot to be done.  I can’t say that I’d be as devoted to the whole idea if I was perfectly healthy.

As I’m getting older, moving forward in life, I’m starting to realize some things.  While having Crohns Disease isn’t the ideal way to live my life, it’s not the end.  I’m not stuck in my tracks, and by taking charge of my life, my body, I have a chance to make improvements.  So instead of dwelling about how “life stopped” because I got sick, I’m living life, enjoying myself, and striving to take care of myself and my life.  Chronic illness isn’t the end, just a new way of living.

 

Now if only the infusion nurse would get her butt over here and unhook me.  I am starving, and am looking forward to grabbing lunch.

It’s been one year. (Written Earlier)

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Right at this moment, I’m at Highland Park Hospital.  It’s that time again, time for my Remicade infusion.  I come in every 8 weeks for a few hours, get my medication and I’m out!  It’s pretty boring, and I usually have to take off of work to do it, but it helps.  My Crohns Disease has been flaring for the past few weeks, but nothing too major, so I am still pretty grateful for my infusions.

So here I sit, frolicking around the internet while the boyfriend watches Pineapple Express on his phone.  I lost interest as soon as he said the title, so in go my earphones and on goes the music.  So as I was mindlessly searching the internet for something I didn’t already know, I realized something.  One year ago, I was here too.  Except one year ago, I was admitted and here for a week for a bowel obstruction.  I had been facing surgery and was pretty scared, that and bowel obstructions just generally suck… you know, excruciating pain and puking and all that nonsense.  So it’s been almost exactly a year, I’ve managed to keep my ass out of an admission for a whole year (minus a few overnights).  I’m pretty proud of this… I’m taking it as a big giant Fuck You Crohns Disease!  

It’s pretty baffling to think that I’ve been living with Crohns Disease for 4 years already.  Some days it seems like it was just yesterday that I first started showing symptoms,  other days it seems like this has been my life for as long as I can remember… those are the days that I forget what feeling perfectly healthy feels like.  After four years though, I’ve learned that it is something I can live with.  It’s not the end of the world.  Yes, it sucks, yes I feel like I got the short end of the genetic stick, but life goes on.  Through the past four years I’ve learned that life is what you make of it.  Simple as that.

I’m luckier than some though, while my Crohns is not in remission anymore, my symptoms are still not quite severe and I can still function with a little bit of effort.  While my disease could progress much farther and it is working on it, I have a wonderful doctor and very supportive family.  When I need help, all I have to do is ask, when I need a should to cry on, I have one.  I am lucky, and today is one of those days I am thanking my lucky stars.