J-pouch Life » jobs

Crohn’s…Again?

Lizz — Thu, 05 Aug 2010 23:21:56 +0000

Hi all! So for those of you who have followed my story for the past few months you know there have been many ups and downs. New theories emerged, the one most perplexing and possibly exciting one being that perhaps I didn’t actually have Crohn’s disease-maybe just a horrible case of pouchitis due to poor pouch function. Several tests later, and another Prometheus test result just confirmed Crohn’s. I heard this back in 2006 for the first time, after several post-surgical complications and made my peace with it. So, to be told that I “might” not have it was sort of annoying, sort of exciting, but I guess in reality, I knew that my luck was just not that good! So back to Crohn’s disease and back to my perspective that it really doesn’t matter what I have as long as it can be treated. Treatment, however, brings a whole new scope of problems. Turns out now that since this is (once again) permanent, and not yet curable, that I have some decisions to make. I am on tons of meds-weekly Humira shots being one of them, and lots of antibiotics. I take Xifaxan and am currently taking Augmentin for a sinus infection. Gosh, it makes me feel SO much better. Unfortunately, I can’t pump myself THIS full of antibiotics on a regular occasion, so I have some thinking to do…I’ve been going to physical therapy to try to get my pelvic floor muscles to relax so I can poo properly. If this doesn’t work and things don’t improve (I’ve had mild to moderate inflammation despite being on all these drugs), it’s time to say ta ta to the pouch and HELLOOOO to an ileostomy again. Don’t mind to go this route if it would help, but my surgeon suggested basically amputating the pouch to do an end ileo and I’m not thrilled at the prospect of losing what little guts I have left. As you also are possibly aware, I was fired from my job because I was absent a lot at the first of the year due to my ongoing health issues. Thankfully, I am getting unemployment benefits right now and have my health coverage through COBRA, but neither of those will last forever, so I need a plan. My mom keeps suggesting disability. Part of me agrees with her-most of the time I am too tired to do much of anything, but then I think, “but maybe I can get a work from home job!” I’ve been applying for stuff, but I really need something flexible, and not many of those exist in this economy. Le sigh. What to do? I don’t want to feel like I am “giving up” on a “normal” life, and it’s just not my style to not work for my earnings, but I guess I need to be realistic. I just feel defeated when I consider that option. Should I just bite the bullet and apply for disability? Most importantly, I have to have health insurance and I don’t think I can find a full-time job that will provide that and allow me the sick leave which I will likely need.What would you do?

These posts might also help out:

July 15, 2009 -- Don’t Ask, Don’t Tell (12)
November 10, 2009 -- Just Dance! (8)
February 11, 2011 -- Belladonna Wars? (7)
December 8, 2010 -- Cleveland Clinic, Day 1 (6)

“You’re Fired.”

Lizz — Mon, 15 Mar 2010 20:01:40 +0000

Well, this is one of those days that I come here to post and I wish I had a positive, uplifting one for you…perhaps this will turn out to be just that. Today, I was fired from my job because of my inability to come to work regularly because of my disease. Now, my employer is simply blaming it on an attendance issue, but they are all aware that I had a “condition” which was keeping me from working regularly. I’ve been having issues since December with a Crohn’s flare or a pouch problem-my docs and I are still trying to figure it out. I had a barium study done Friday, so hopefully that will lend some wisdom to us on that matter.

I feel relieved, bittersweet, I think. I will miss the money, and some of the work, but it was a horrible environment for me to be in, quite honestly. I loved the people I worked with, but the energy was all stress. When I am completely honest, I just couldn’t do the job because I was too tired a lot of the time when I was there to function mentally. I forget so quickly how much I’ve been through and what my body has to go through to just function every day when I feel well-I work as hard as I can and I see my “old” self come though. However, those days, honestly, kick my ass and I end up having to sleep for 4 days nearly without interruption to recover from it. It’s depressing and frustrating to me that I cannot do certain things that others can, and that’s why I’m really upset. I’m also worried about what my fiance (soon to be husband) and I will do financially, and what I will do about health insurance.
On the other hand, this opens a lot of doors for me. I have more time to help out with CCFA stuff, and to finally make it a priority to find a career, not just a job for a paycheck, that I can do and that I will enjoy.
Life with Crohn’s and a J-pouch is not easy, but I’m glad to have it.

These posts might also help out:

December 29, 2011 -- Loss & Gain (2)
August 5, 2010 -- Crohn’s…Again? (7)
November 10, 2009 -- Just Dance! (8)
December 8, 2010 -- Cleveland Clinic, Day 1 (6)

Don’t Ask, Don’t Tell

Lizz — Thu, 16 Jul 2009 02:13:57 +0000

So, at every previous job since I’ve had IBD I’ve been very vocal about my disease. It was practical because I was sick at the time, and when people asked me questions, the advocate in me burst forth! Since I’ve been in remission and managed to get a job in Portland, OR in this crazy economy, I’ve decided that it no longer requires mentioning, or for that matter, broadcasting. I tend to get up on my educational soap box when it comes to IBD, which is a good thing, and something I will certainly continue to do, however, I think many of us have learned all too well that even the most empathetic and understanding employer will, to some extent, always see your disease as part of who you are, and therefore, as a limitation. I’d rather my work speak for itself. I’m working as a paralegal, which basically means I do a lot of writing that the attorneys sign their names to. It’s okay because I adore any chances to write and get paid for it I’d rather keep professional courtesies, well, professional. I am a very open, friendly person and I definitely let that come out in my job, but I am also trying to work on that part of me that for so long made Crohn’s a part of my identity. It doesn’t define me and I no longer want it to, so I’ve made a real effort to modify that. It’s easy to not complain when you are in remission and not suffering or in pain. So, for the past few weeks, I’ve overheard our secretary talk about her mother’s “colitis”. I kept my mouth shut until today when another paralegal started talking to her about a friend of hers who had Crohn’s that was airlifted to the hospital. At that point my IBD alarm went off and I thought, “Okay, I know a lot about this…maybe I can offer some helpful words.” So, without an intro of, “I have that too!” I just asked if the girl was on any meds. Sounded like she’d unsuccessfully tried everything, including Humira, which was my savior. I had nothing more to offer, so I hushed. The secretary then started talking to me about it more and I said, “I have an interest in GI disorders and know quite a bit about it, so I was curious.” I was actually able to make some suggestions to the secretary about her mother, she then asked me, “So do you know someone with it?” My reply, a smile and a, “Yes.” I then went back to my work.

So what is your policy regarding IBD in the workplace? It’s certainly nothing to be ashamed of, and I’m oddly proud of it, but I’ve lived and learned and am, for now, deciding to remain a mystery

These posts might also help out:

August 5, 2010 -- Crohn’s…Again? (7)
November 10, 2009 -- Just Dance! (8)
February 11, 2011 -- Belladonna Wars? (7)
December 8, 2010 -- Cleveland Clinic, Day 1 (6)