Living in a Constant State of Being "Not Out of the Woods Yet"

I haven't written about Crohn's in a while because part of the battle of dealing with a chronic illness is that it can kind of be depressing and people sometimes don't understand that you may need to talk about it and it's not because you're trying to complain or get sympathy. It's hard and some days are REALLY hard and after a few weeks of only days that are hard and really hard, it's time to talk about it. Like it or not, that's where I am at tonight.

A few months ago my gastroenterologist decided that labs were coming back great and I hadn't been admitted to the hospital in a while but my Crohn's was still showing no signs of going into remission. We had my Remicade infusions on an every 8 week schedule but I was still going into a full flare by week 6 until about a week after each infusion (essentially still spending almost half of my time in full flare mode). The only thing that keeps me out of the hospital at this point is that I rarely heal from one fistula to the next so my tissue has no time to repair before it's ripped apart again and due to that lack of strength and healing time, that breakdown is doing part of the job my surgeon would be doing if I went in. My gastroenterologist thought we should get a little more aggressive with the Remicade and change me to an every 6 week schedule.

In September I had my first infusion at the 6 week mark and wouldn't you know it, I was doing great and then flared at the 4 week mark (again, like before, 2 weeks before my infusion). I was shocked but thought maybe my body was just off and after my next Remicade, I'd start to feel better again. I had my 2nd infusion on the new 6 week rotation 4 weeks ago now but I never got any relief. I've essentially been in between hard and really hard days for 6 straight weeks now with the last 2.5 being nothing short of torturous on my body. The last 3 days have had me praying like a mad woman and the husband and I going back and forth on whether it was time to make the long drive to the hospital. On Sunday night I looked at him and said, I think I'm down for the count. He asked if that meant I was ready to go and I asked for 2 more days. He said, I just wish there was something I could do for you and I thought about it (wishing there was something too) for a minute and responded, you could come pray with me. My husband looks hard at me, immediately turns off the tv, and comes and sits down on the couch where I'm laying, grabs my hands, and starts to pray, hard! Yes, I'm seriously blessed by him and will never forget that I am married to a very special man!!! I don't know the reason for my struggles but I never doubt God has a plan for them.

Since Sunday night, I have been "down for the count" with a few moments of short lived attempts to throw in a load of laundry or make food and read about a hundred random texts from my husband while he's at work making sure that I'm "relaxing" or  "resting" (both in quotations because they are nearly impossible when you are in pain). The pain has been increasing at a steady rate with tonight bringing me to a point where I almost asked my husband to come home. I decided to play doctor on myself (I'll spare you all the details) and have finally got some of the pressure of one of the abscessing fistulas to release but I'm definitely 'not out if the woods yet." With that being said, I'm sort of laying/sitting on a heating pad right now so the heat can draw more of these nasty "toxins" out of my body so the swelling can go down, I can get some healing going on in this "broken" body, get some strength back, get my booty out of bed, and get back to life as I know it.

Any extra prayers you can send up would be amazing and much appreciated and I'll leave you with a few quotes, which have seem to become my norm here :)

Never forget what you are going though always has something for you to learn.

Let your struggle make you stronger

and share what you've learned!!!

Until Next Time...

Has It Already Been a Year?!?!

It's crazy to think that it's been over a year since my last post!!!  There are SO many changes in my life since my last post that I'll try and sum it up as quickly as possible so I can move on to life as I know it today... there still so much going on!

2011

* Had setons removed because my body seemed to be healing.
* Aug 15th, I was admitted to the hospital for yet another abscess drainage and spent my mother's birthday having surgery.  As a result, we stopped the Humira injections because they were obviously not working to stop the fistulas and abscesses.
* Returned to the hospital again on October 25th and spent my sister's birthday having surgery for ANOTHER fistula and abscess drainage.
* Less than a month later on November 16th, I was back for my 3rd surgery in 4 months and my fourth for 2011... and again for the same reasons.

I returned back to work after each surgery as soon as I thought I could... but definitely didn't take the time that I should have.  Call it being stubborn, a Taurus, my mother's child... I am all of the aforementioned. I mostly did it because I felt like I was a burden to my co-workers.  My body was exhausted and was not getting enough time to heal in between attacks even without returning to work. It was a ROUGH and EMOTIONAL time for me!!!

My husband, doctors, and I decided that we should give the Humira another try but decided that this time we would change my injections to once a week instead of two injections every two weeks.  Same amount of medication but more frequent injections.

2012

* January/February - Said "See you later" to some of my best friends from work due to position eliminations, retirements, and new jobs.  The hubby also moved 3 hours away from me to take a new job.
* March - Humira seemed to stop working as well again.  By the end of the month I was having full blown reactions to the injections (it looked as if baseballs were trying to come out of my skin!!!).  That was the end of my Humira injections.
* April - Started the month off right by taking a week off to spend up north with my husband, celebrating our 3rd wedding anniversary and 14 years of being together.  Much needed!!! The day before I returned to work we started the loading doses for Remicade and I started packing to move out of our apartment to parts unknown.  By the end of the month it was clear that I needed to focus on myself and be close to my husband.  The day that I decided to give my notice, I was actually called into the office to be told that my position was eliminated.  That night I turned in my keys to our apartment and closed the chapter of our lives in Vancouver.
* May - Moved 3 hours away from my family to join my husband in the 2 family home he was renting with his brother and his family but returning every few weeks for my iron infusions and Remicade doses.
* June - Was blessed with the birth of a new nephew but also lost my grandmother to cancer.  Her passing was one of the hardest things that I have ever had to endure... even through my Crohn's battles.  My grandfather told me at her graveside service that she left me all of her strength to help me get through this and trust me, when I am down, I remember those words!!!
* July - Enjoying life but my health is not getting better.  Spent most of the month in A LOT of pain.  Finished my loading doses for the Remicade but already not seeing the results that we'd hoped for.

And here we are all the way to August...  I welcomed another nephew, this one from my own sister :)  Also, visited my GI doctor who agreed that our results are not what she'd hoped for as well and would like to run tests to see if I have enough Remicade running through my system.  She also started me on another medication called Imuran along with the Remicade to see if we can hit this harder.  I took my first dose tonight... but that's a whole other post that I'll have to save for tomorrow :)