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A poem by Robin Morgan...Go buy her poetry and her literature and stuff...

Survival is the final offer

that arrives at the eleventh hour

just when pain to the tenth power

would kill you with another ninth degree.

By then, relief strikes you brief as an eighth note;

you wear doom proudly; it's your seventh seal.

But life whispers through your sixth sense

of what might await you in some fifth dimension

where miracle is saved for the fourth quarter.

Tricked, you sigh and rise on the third day.

You know better, but with no second thought,

risk that first step-absurd as first love at first sight

as if you were back at ground zero, as if it cost

nothing, as if this were not the last laugh.

Meaning

Blogging For LGBT Families Day

It is blog for LGBT families day and depending on how often you read and whether you pay attention, you may know we have one of those families. I normally blog this sort of thing elsewhere but this one of those days being in that sort of family had more bearing here. You see, I went for a test. I went to a place where I had to fill out registration paperwork. It went fine...today. The registration person didn't feel the need to question the information on the HIPAA form. But, every time I fill one out...there is that clinch. Will she (invariably a she in those positions...the paperwork taking positions) question it? Will she write "Mother" next to the name? (this has happened.) No, I don't mind explaining it. Well, yeah I do. But I mind more when I am sick, or getting ready for a no doubt uncomfortable test.

Do I think that Hipaa (does anyone else want to call it HIPPA?) is a good idea? Yeah, it is always nice to know my boss, my ex, anyone with enough curiosity can't enjoy reading the annals of my anus. More fun to read my blog anyway. On the other hand, the fact of the matter is that my partner is on my paperwork for what can seem like trivial reasons, so the nurse can call her and say "lab results mean more tests are needed," "Doctor is calling in a script". Yes, they could try and call me but Murphy's law means that I will most likely BE IN THE BATHROOM when they call the office. And of course, if I am sick...I may be in the office, I may be home. In any case, the best way to reach me is to call her. The best way to schedule something-call her-especially since she has the calendar and I can get numbers transposed in seconds. She drives. She has the car. She has the immutable meetings and responsibilities more than I do. In any case, when the dreadful happens and I am in the hospital, she is my grown-up in town who will be able to follow what is going on.

Back to LGBT family day though, she is my family. Her kids + my kids are our kids. If I say in response to some comment "Oh my daughter is going to a concert tonight", do you really need to know "is she really your daughter"? Because she is. Do you need to take the paperwork at the doctor's office and put the info into the computer or do you need to delve into who that person is and why they are listed? Yes, certainly, discussing your family with your doctor is important. No problem. The financial office at the doctor? Not so much. Other than are you the primary card holder? Not at all.

Then there is all the other paperwork...but mostly I want to get past the point of the awkward moment when I hand it in or answer the intake interview questions. I know my answering them makes them realize that we exist and look and feel and do just like everyone else and that helps. It is just the waiting for everyone to not give it a second glance and the startled questions that makes it hard. She is my family, our kids are our family.

Crohn's is Expensive

Never mind that prescriptions run over $100 a month or I hit my out-of-pocket maximum every year on co-pays. We won't count the stuff that is just part and parcel of Crohn's. It all rots and I am very grateful for the insurance that covers the largest part of my Crohn's expenses. The insurance I had when I was diagnosed and for the first year of Crohn's meant 20K out of pocket in less than a year, just for direct medical expenses, not including the scripts and non-prescription stuff.

Crohn's has now required a new computer. Yes, that is right. A new computer.

You see, a couple months back, I had one of those get to the bathroom RIGHT now moments. In my hurry to not have messy cleanup, the laptop didn't get to its spot and instead crashed to the ground. As I ran to the bathroom and ran back, I worried. My computer wasn't that old...just a couple years. It had some "I wish it..." issues but it was my computer. We had bonded.

Thankfully, the computer seemed ok...sort of. It made some strange new whirs and clacks but it worked. Then the usb ports started acting up and the click pad thingy wasn't happy. Ok, thats fine. I found a work around for when it wouldn't click. The click would come back. But then, today, it died. sort of. I was working along and fade to black. Hmm. Jiggle. Ok, it's back. No, it isn't. Fade to black again. Ok, reboot time! Turned the computer off, gave it a rest. Turned it back on. All better...for 10 minutes. Then...back to black. Then auto shutdown. Then nothing on a reboot. At all. Well, the nice noises. But nothing. sigh. Near weeping. We don't have money for a new laptop. Yes, I could take over a kid's computer, share a computer, but sigh, I spend a lot of time with my computer. In bed. sigh.

Lovely partner looked at some reconditioned ones online. Nothing was appealing. I didn't want to spend money and get a new computer. I wanted MY computer. sigh. We hooked a monitor up to the laptop. Eureka! Computer...but extremely awkward and the computer was still making impending death noises.

So, I read my feeds, when all else fails, read your feeds. Lifehacker had the heads up on the new Dealighted.

It is a new deal aggregator much like dealdump.com. I clicked. I always click to see new stuff. I often click, peer at it, and shrug...one beta is just about like another after a while. It takes a lot for me to get excited. This one was different...why? Guess what was at the top? A new laptop, pick up in store, less than $400 with a free printer. Yep, it is basic but it works. Of course, it feels weird, looks weird and has VISTA. (which looks incredibly weird by the way) +it has nothing on it, so my week will be installing software and fidgeting settings.

I know. I should be excited about a new computer. I am not. It is just more money I didn't have and didn't want to spend. It is unfamiliar and weird when I am already crabby on prednisone. Plus the fade to black of my old computer is also costing me nearly 16 hours of work on my extra job this weekend too. Sigh. I guess I will get to know my new computer with some late nights this week, hope my body cooperates.

Anyone want to send me stickers to make my new laptop mine?

Travel and IBD

I recently ran across this article on IBD on the Road and thought about travel with my tummy troubles.

It is very easy to want to stay at home when you have Crohn's or Ulcerative Colitis. You know where the bathroom is, you have laundry facilities, your doctor is close by...but sometimes it is good to get away. Letting tummy troubles keep you at home lets your disease own you and isn't healthy at all. That said...it isn't all sweetness and light traveling.
Here are some tips that I have:

1. Over pack. Even if you have never had an accident in all the years of tummy troubles, you could and nothing is worse than having nothing else appropriate to wear.

2. Take a heating pad with you if you use one at home. I do, and after one too many nights in a hotel without one, I went and got just a small one to keep in the suitcase.

3. Take all your meds...not just your daily meds. You may not need them. Hopefully you won't but take them anyway. Nothing is worse than a vacation ruined by nonstop throwing up just because you left the nausea meds you never use at home.

4. Don't get overtired. Just because you only have one chance to see where ever you are doesn't mean the best approach is to go at it nonstop. Your body will stop you cold if you do.

5. Throw a box of crackers or whatever safe snack food you eat in your suitcase. Off mealtimes, touring, and just not being able to hit the kitchen when you need a snack can cause more problems than fitting a box of crackers in your suitcase. Room service menus rarely have anything for the tummy troubled and vending machines are worse. (If they are even available! I have noticed that fewer and fewer hotels have them.)

6. BYOB-You might also want to make sure you have bottled water, sodas, whatever with you. Another city's water may not react well with your gut even if you aren't traveling to a foreign country. Dehydration-bad.

7. Read up on where you are visiting before you go. If you are going to museums or theme parks, see if the map is available online, so you know ahead of time where restrooms are located.

8. If you are going to go see family/friends, let them know ahead of time that any lack of eating, going to bed early, etc isn't a reflection of their company or their cooking.

9. Bring and use hand sanitizer. Lots of it. No, the grime on the atm is not any worse in Peoria than it is in Philly but the bacteria and viruses hanging out in that grime may well be and will grab onto you like there is no tomorrow. Add to that the closed-in spaces of theaters, planes, etc full of people and more public restroom usage than usual.

10. All that said...here is something-prepare for the worst, but expect the best. Some of my best days since getting sick have been while on a trip. That traveler's constipation that troubles so many "normal" folk sometimes hits me and gives me a couple days of quiet guts. Even without that perk, there are good days and sometimes those are out on the road, making for some really magical times.