I normally don’t get so over-excited about ostomy supplies, but today I did!
My ostomy supplies arrived this afternoon while I was out with my daughter. I knew to expect them today. I was getting worried, because not having insurance and relying on the goodness of others to allow me to ‘buy’ my supplies and pay them back later was beginning to wear on me. I had to fill out a form about my finances and I faxed it back, then had to fill in some missing information and fax it back again with the filled in information.
Anyway, I believe I will have enough to use the next couple of weeks and then take enough with me when I go on my trip to Washington State with my 8 year old for a week for a family reunion and a surprise 90th birthday party for my mom – who actually turned 90 in May. Wow, I’ve just come to the realization that my mom is 90 years old, I haven’t seen her in a couple of years, at least, and to be spending time with her and other family members – some of whom I haven’t seen in over 30 years (or more!) is exciting to say the least, but to be sick, like I am, makes me rather sad. I won’t be able to participate like I normally would, but I think my family will understand. At least I hope they will.
I have devised a way to have my bags (I wear two at a time now) last at least two days, if not longer (3, 4 or 5 if I’m lucky) and love finally figuring out how to make them last so long. I think maybe I should buy stock in Medfix or Hypafix and the clear tape (I prefer to call it ‘glass’ tape as it is clear) because I use them both to secure my bags (after paste and barrier rings) firmly to my abdomen. Now, if I could just figure out a way to get wet without getting the bags wet, I’d be all set. I’m still thinking about how to manage that situation.
Life does go on and I’m praying that soon they will get better. Not only for my husband and I, but our 8 year old daughter as well. For the last 10 years my husband has done everything to keep this family afloat without really working. Now, I’m pretty sure this isn’t going to sound so good for him, but he managed to not have a real live, no – you fill in the blank – it’s a 4 letter word, beginning with ‘s’ and ends in ‘t’ job, making me do all the work of staying employed and having insurance for the family. Well, when I first got sick, I told him this is probably the end of the working line for me as I don’t think I’ll be able to continue working anymore.
And I meant it. I honestly believe, even though the last three years working as an English Language Learner – Instructional Assistant has been the best darned job I’ve ever been privileged to work at, made me sick. The job was high stress and high activity and my poor body, between not getting the adequate sleep I needed every night, the stress of being a mom, wife and daughter to my father this last year and an already compromised intestinal tract, I developed Enterocutaneous Fistulas (ECFs). He still has his moments where he thinks I’m bluffing and that I’ll be returning to work after all, eventually, but I’m not so sure. We’ll see. Whatever job I get, whatever field I decide to go into, will have to be one where I can work from home, or part-time with awesome benefits and pay despite the fact that I’m only part-time, and allow me to take sick days when I need them and see my doctor when I need to.
Back to my husband…he is working on getting a full-time, Monday through Friday 8a – 5p, real live, no s**t job! A regular 40 hour work week job that will pay him a decent salary, awesome benefits,including insurance for the three of us (hubby, daughter and I). No more living paycheck to paycheck and no more stressing about how to make ends meet, pay rent on time, and all of the other bills that are outstanding. We are both attending the same college, full-time online and if, IF he gets this job, his tuition will go away, as long as he continues to work at the college we are attending.
My life will be less stressful, I can finally be the kind of mother I have always wanted to be for our daughter and give her the kind of life she deserves.
Until next time,