Monday, December 14, 2009

Liza's ways to save

Last week I got a hair cut. Not just any hair cut. It is hard to justify something so unnecessary but after a year and a half, it was time. So...

I took all the change in our change jar to the bank (coinstar costs like 10%) and cashed it in for bills. I took a coupon from my sister for Great Clips and lopped off my hair for a mere $5 with a $5 tip.

And, I had $10 left over. Beat that. :)

Thursday, December 10, 2009

...

I haven't written for a while. I wish I had an excuse. I don't really have anything going on except, what I call, "still healing".

I recognized that I am more embarrassed with my condition now that everything is tucked away and I look "normal". I can't point to something and say, "see- that is what is going on!" Since the beginning of this ordeal, I have said, "This will get me back to normal; the way I was before colitis." Now, I'm afraid, it won't.

I am still going to the bathroom pretty regularly; Maybe 10-15 times a day. I still have accidents while I sleep but usually only once every two weeks or so. I am going to the bathroom 2-4 times every night. It is really hard to have a good, uninterrupted, night's sleep.

I'm dizzy, in pain, tired, and, still, somewhat depressed. Eli and I have fortunately worked out issues that have come up. Our communication has gotten even better and we are able to laugh again. It truly is the best medicine.

... Got to go!

Thursday, December 3, 2009

Stress and Strain

During the holidays, I assume most people encounter more than the usual stress. Unfortunately, if you add a chronic illness to the mix, it doesn't get easier.

I have read pamphlets about "Taking Care of the Care-Taker" but there is still some difficulty understanding each other at times. I understand that he has to deal with real life (work, bills, hobbies) and when he gets home, he has to deal with a sick wife. That is a lot to take on. Any illness is a lot to take on for all those involved.

But no matter how strong people think the "sick one" is, life almost stops for them. And that can be just as unnerving. Imagine losing the most elementary of functions. Of course the last thing you want to do is create more work for those around you. So often, I feel, we take on more than we can handle. I guess if the care-taker does the same, you both end up stressing yourself out and disconnecting from the other.

I pride myself on my ability to empathize. But once in a while, I think I need to check in on myself.

Road trip with my new innards!

The trip to Ohio went well. It usually takes 8 hours but with a couple extra bathroom visits it took us about 9 hours to get there.

Not too much discomfort. Of course the hardest part was not over eating during the holiday. I think I did pretty well. There are always temptations but I at least have the luxury of rest. Whenever I feel overwhelmed or just couldn't sit up straight any longer, I just went to the back room and slept. I guess people don't expect much from you after surgery.

The highlight: Eli's grandfather lives across the street from an Amish family and my soon-to-be-sister-in-law looooves animals so of course she asked to ride a horse. I was second to mount up! I can't believe I got up there. This was a big beast. I made them promise to hold the reins during my ride but how much fun!

I guess I am getting back in the saddle!

This week I have also noticed a significant decrease in swelling. I am also down to a normal bandage instead of the gauze dressing. Slowly but surely!!

I can't wait for Christmas!

Friday, November 20, 2009

Out and about

Yesterday I got my purple stitch removed. To celebrate, I went out with friends to hear Eli and the boys play some music. I was able to eat and sit through 3 bands! Bathroom visits:1.

I am still wearing a bandage- Doc says until it stops sticking to the dressing. I hope that is soon. I also can't wait until the swelling goes down. It has a little but some pants still don't fit right.

This whole no-colon-thing is really working out for me.

First road trip next week! :)

2 more

Two more job rejections this week.

I hear the market is turning around...

Ups with the downs

This weeks has been a roller coaster. I found out that, although Unemployment has been extended to 18 months, the great state of Georgia has not received the money to fulfill that bill. On the other hand, I got to say so long to my surgeon. If nothing goes wrong from here on out, we should never have to see each other again! :)

I do adore my surgeon and really admire his surgical ability but I'd much rather get on with my "normal" life. To say good-bye, I made a card in the shape of a butt that said, "Thanks! For saving my butt!" I thought is was appropriate...

I have been feeling so much better. According to Dr Nichols, I seem to be doing better than the average patient. I would say I go to the bathroom maybe 10 times a day, including twice during the night. The average patient is going more like twice as much. No more leaking or surprises. I do have some discomfort but nothing like colitis.

This week, I am gearing up for Thanksgiving! Family time and food. Who could ask for more?

Tuesday, November 17, 2009

No soup for you!

Today I responded to a letter sent from the department of labor. The office seemed smaller than the first time I went there. I had the same purple folder that sat on the administrator's desk when the words, "I'm sorry" fell out of her mouth. This time the folder is packed with denials, appeals, job searches and extensions.

This time, like last time, I was told there are no more benefits for me.

As part of our loan modification, I am supposed to see a credit counselor. I had a phone appointment set up for this afternoon with hopes I would get home before the call. After I left the department of labor, I headed home and watched a couple episodes on Hulu. When the phone rang, I gathered all my documents to discuss our finances.

What came out of this appointment is that the only thing we can cut back on is our food. Because our credit is still in the 800's, we are not at the top of the list of people to help. I was told to just keep doing what we are doing. As if that is going to help...

Wednesday, November 11, 2009

Expect the unexpected

Things were going pretty well. I got all my tests run and registration completed. Unfortunately, there is always something.

CT scan showed a pelvic abscess... whatever that is. The doctors explained that it could be something- it could be nothing. Is that supposed to comfort someone? And because the surgery is so soon, we had to hear from the surgeon if it would interfere with the take-down surgery.

We decided to continue as planned with the surgery while the surgeon reviews the film. He couldn't tell where the abscess was so the day of surgery, my doctor hijacks my stretcher and hauls ass down the hall to the hospital CT facility. I guess it is an unusual sight to see a doctor wheeling a patient around. Everyone we passed in the hall ask, "You need help? You got that?" We had a deadline...

The first CT scan was administered from the mouth and with an ileostomy, that's where it ends. It can't go any further. Well, this time it was going from the bottom up... not fun. I always told people that the stoma is a kinked hose so the bottom part of it leads to my bottom. Honestly, I was never really sure but it made sense. I can tell you now! When they injected that fluid in my bum, my bag filled up FAST. I don't think she believed me when I said, "I can't hold it. Stop!" But when she saw my bag, she knew we were overflowing.

The film was read and I was off to surgery.

Wednesday, October 28, 2009

Chronic full time job

Yesterday I was working on surgery stuff from 10:30am to 3 pm. I had my pre-op appointment with Dr Nichols; then had to register with the hospital; then had to get blood work done; then had to pick up my barium for my CT today.

Today, I had to WAKE UP EARLY- just to eat because I can't eat four hours before my CT. I have to start drinking my Barium at noon, finish it at 1pm and then head up to the Kaiser that has a radiology facility... Later today I have to call the hospital back to register over the phone because they were too busy yesterday.

With a disease like this, who needs a job?

Lock and roll seepage control

If I could offer some advice to other ostomates:

I have been using the lock and roll bag from Hollister for a few months now. It is easier in that I don't have that bulky clip digging into my leg and I never really liked the idea of folding the tail when I emptied. I tried the lock and roll that the company included as a sample and I ordered them (with the vent) the next month.

While in the hospital, I was told to change the wafer every four days and the bag about every two days... "but you can change it whenever you feel you need to". I got in the habit of changing the bag when I changed the wafer. Now that I use the lock and roll, I have found some seepage in the folds when I empty. Not much, but seepage nonetheless.

When I called my representative, Johnathan, at Hollister and told him of my issued he informed me that the vent and the bags are intended for two day use. Changing more frequently could reduce the seepage and bag bloating (see earlier post: Vented Bag Retraction). I tried that... to no avail.

I finally found what works. I fold the tail into the flesh-toned mesh. This way the waste is not pushing on the Velcro and prevents seepage. Now every time I empty, I have a clean tail...

I just realized how that sounds to someone without an ostomy :) Hahaha.

A sign of the times

I am happy to report that organizations are again starting to correspond with the lowly unemployed.

I have been unemployed for one year now. At first, organizations would send an email or even postcard informing the applicants of their time line and to serve as verification of resume received. Slowly, the organizations became less interested in cordiality. I would go months without hearing anything from the organizations I applied to.

Times, they are a-changing. Last week I got two emails regarding my resume! One rejection letter-still stings a little; and one"resume received" letter with a time line!

This could mean two things: Everyone in Atlanta already has a job and I am the only one still applying, or organizations have hired someone to send out cordial emails to the unemployed!

I should hear within 20 days if I'm in or out! Make it work! :)

Monday, October 19, 2009

Middle of the night wafer change

Take down surgery is three weeks away. I have had this bag on me for five months! You'd think I could take care of it by now....

Last night, I decided to change my bag before bed time. I figured the vent would work better and it just feels so good to sleep with a nice, clean bag. I awoke at 4:30am to a leaking bag! I had no idea why; I thought I didn't close it all the way, maybe it opened a little while I was sleeping (Now it is so cold I HAVE to sleep in pjs). By the time I got the bathroom light on, and after further examination, I realized that my seal leaked!

This is a first for me. I have read about other ostomates' seal leaking out of no where but never has it happened to me; not like this... until last night! Out of no where! All over the place. So I gathered my supplies, covered my gorgeous couch and got down to business.

One good thing, the stoma is not very active at night. You'd think it is because I almost always wake up with a full bag- I'm talking FULL! But, this morning, it was good to me and let me clean it, dry it, crust it, stick it and bag it.

What a night.

Tuesday, October 13, 2009

Best Colorectal Sergeon in Atlanta

Either I have a bad HMO or the best colorectal surgeon in Atlanta.

I am still experiencing some tummy problems when I eat and am feeling really week the last few days. When I reached out to my network of doctors, the only one to call me back was my out-of-network surgeon. This has not been an easy journey; you never know who to call if you have a pain, or if the problem is surgery related or digestive related, is it just the flu or what. No matter how crazy my concerns are the first person my husband and I call is Dr Nichols.

He always responds within the hour and is always willing to hear me out. He has a reason for everything and a resolution for everything. He gives me options and is always willing to work with me if I'm just not feeling it.

Why do I spend so much money each month on my premium and I get no response from those doctors?

Saturday, October 10, 2009

SICK

Well, they didn't poke the stoma! The GP felt my belly, and took some blood, and ordered an x-ray and a pee test... The results: inconclusive!

I mean, I'm not pregnant; It doesn't appear that I have a blockage.

Maybe I should just have all my innards removed to narrow down the problems... One day I will be pain free! I know it!

back to life!

You know how they say if you never experience pain, you never notice the great stuff? No kidding.

This month is our third anniversary and we celebrated like it was our 25th! Eli knew I had not been feeling well and still have bad days so he wanted to treat me.

We went to the beach where we were married and spent a few days in Big Sur, CA. It was perfect. When we got home to my parents' house we had a get-together with some friends and family and it was the best medicine I could as for!

Things were so great. Now I'm back home and I am sick all over again. I have a cold, no doubt from the plane trips; pains in my belly again for no reason that I can think of and I am hunched over like I was after surgery!

I guess I'm back to the doctor's this week and see what tests they can come up with now.

Tuesday, September 22, 2009

Gone but not forgotten...

The last few days I've been throwing up after most meals. Not really sure why except that I'm not pregnant. Some think it could be a partial blockage. It could be another ulcer... I just want to eat something.

When in doubt, I always switch to liquid diet. No fun but it takes the pain away.

I thought when I got rid of the colon I got rid of the pain... Apparently not.

I'll see my family doctor tomorrow and really hope they don't have to poke my stoma.

Wednesday, September 16, 2009

Vegan cookies for the ostomate's soul

So, Eli is active in the community and as his supportive wife, I occasionally have to make things for his meetings. This week was a brain-storming meeting for his urban hikes and quite often the hikers or interested parties are vegans. If you know me, you know I CAN NOT LIVE without dairy! I love cheese way too much! But I'm happy to oblige the little vegans.

What I came across was not only a vegan friendly cookie but also a cookie that thickens up my stool. Did this little story just go south? Sorry, but I put ostomate in title... :) In my cookbook they are called Peanut butter-oatmeal rounds but I call them a little dollop of heaven.

Here is the recipe with the original animal products and the vegan substitutes.
3/4 cup butter, soften (I used mashed bananas)
1/2 cup peanut butter (I used sm
ooth because nuts can cause blockages)
1 cup granulated sugar (I did half sugar half splenda)

1/2 cup packed brown sugar
1 teaspoon baking powder

1/2 teaspoon baking soda
2 eggs (I estimated two eggs worth of apple sauce)
1 teaspoon vanilla
1 & 1/4 cup all purpose flour

2 cups rolled oats (I don't really know what rolled oats are so I just grabbed some plain instant oats from the cupboard)

and the recipe calls for 1 cup of chopped peanuts but I didn't us them... blockages.

In a large mixing bowl beat butter (or bananas) and peanut butter on medium high for like 30 seconds. Add sugar, brown sugar, baking powder and baking soda- beat until combined. Beat in eggs (or apple sauce) and vanilla. Then beat in as much of the flour as you can then mix in any left over. Stir in the oats and peanuts if you are using them. Dollop a heaping tablespoon full about two inches apart on ungreased cookie sheet. Bake on 375 for 10-13 minutes. The bottoms should get lightly golden... Ummmmm Of course Eli made me put in some chocolate so we used dark chips and they worked out nicely.

Enjoy! :)

Monday, September 14, 2009

Colon Updated!

Thanks to Grandma Hazel for contributing to the colon fund! I am that much closer to paying for the removal of the pain in my butt!

I did my second exam last week and the radiologist said we are looking good. I should be hearing from the doc soon as to when we can set the date for surgery number 2! It can't be soon enough.

Thanks again Grandma!

XOXOX

Tuesday, September 8, 2009

Pumpkins are flowering!!

I'll get a picture up soon! I really hope I have at least one for Halloween this year! Otherwise we are going to have TONS for Thanksgiving!

Foiled Flange!

I had my first leak the other night. After a day of swimming and eating at my sister's, I was experiencing some serious stinging. That usually means the seal is breaking down and it is about time to change the flange (or wafer). Unfortunately, it was after eating all day so I was, to say the least, VERY ACTIVE! We tried to change it but no go...

I have adapted my wafer change to Eli not helping for all the times I need to do it when he isn't around. So, I prep everything and start to peal the wafer but only until the real sticky stuff hits my skin.

Well, the other night I noticed some darkness around the real sticky stuff... It was like a hole making it's way to my stoma! Because I was so "active", I just couldn't change it so I decided to wait until morning... BIG MISTAKE!

In the middle of the night I feel a drip down my side! I pretty much pooped on my stomach in my bed!!! IN THE MIDDLE OF THE NIGHT!!!

So, I got out of bed and started my solo wafer change in the middle of the night. Oh... it was so gross... I had to change my under-roos, my shirt and I couldn't change the sheets until Eli woke up!! So, I dropped a towel on my side of the bed and went back to sleep. Is that bad?

Wednesday, September 2, 2009

Vented Bag Retraction

Ok... So, I would never say anything bad about my bag people-especially my customer service rep Johnathan.

But this bag was not venting. So I called up Johnathan and told him my issue: I got 20 of the vented bags and it seems like they aren't doing their job. Is there some way to prep it?

He assured me I was doing the right thing and they are ready-to-wear right out of the box. He offered a suggestion as to why my bags are still puffing with air. He said if you have a large puff of air at one time, it could take minutes for it to filter out...

Ok, so the product is not faulty. Apparently I am just unusually gassy... ALL THE TIME!! Must be all those burritos. :)

Exposed

Last night, Eli asked if I would get up with him and have coffee before he went to work this morning. Of course I would. For some reason, today I didn't go back to bed, which is what I usually do when he makes such an atypical request. As I watched the Today Show, I was surprised to see a discussion so deeply intimate for me: Miscarriage.

For a long time I have not published my story of miscarriage. I'm not sure why. It was so personal for me and Eli and really, only a few family members knew we were expecting. I have talked about it- it's not like I am ignoring it. But to publish the story of my short pregnancy seemed like it made it available to anyone without discrimination.

Sometimes I can go weeks without even thinking about it. Once-in-a-while I'll hear a song that reminds me; I've come across the sonogram pictures and sometimes when I pass the spare room I think about all the plans I had to make it the baby's nursery. Little plans I talked to Eli about; costume ideas for Halloween to showcase my Buddha belly; they keep popping up in my mind randomly.

I still think about the day we lost the baby. I have experienced so much physical pain in my life but nothing compares to a miscarriage. It was such a sharp pain. It was so distinct. I remember the look on my sister's face when the doctor told us what we feared. I remember when Eli came home and we couldn't say anything to each other; we just embraced.

I have published the hidden posts from the pregnancy and hope it leads to some peace for me and anyone else needing the support.

Saturday, August 22, 2009

New bag trial

So, I am trying a new bag... Same company- Hollister, but it has a "vent"... well that is what they call it. It is supposed to vent the gas without any odor. I'm not sure I believe it.

I have been wearing this bag for a day now and it seems to only "vent" when I don't have any pants on. Ok, so it is summer in the south and, I'm not gonna lie, I sleep in my underwear. Hear me out, there are a couple reason. First, of course is the heat, second is my PJ's kinda creep in the night and push on my wafer, and three, in the middle of the night the fewer articles of clothing to deal with when I have to empty, the better.

Last night the bag seemed to not be so gassy; usually I am all air. So, I thought it worked. But they market it as "no more embarrassing bulge." It seems I bulge only when I am out in public, like, even more than with the bag without this so-called magic vent! What am I going to do with 20 vented bags that don't work?

I'm just glad insurance covers them...

Friday, August 21, 2009

My Bailout!

I have been trying since February to get a loan modification of our mortgage and it finally went through. They have reduced our payments by almost $400! We start our trial period in October and it will take us to the new year! What a relief.

Now we just have to work out a payment plan with the hospital bills! But at least I have a home! :)

Wednesday, August 19, 2009

Look at my garden grow!





Our garden took a hit while we were at the hospital because we couldn't water or harvest. But we are back in the mix and things, they are a growin'!

The pumpkins still have not flowered but they are growing like weeds. They should bloom late August and September and we'll harvest just in time for Halloween. :) Those are our beans... we only have three! On the bottom is our cantaloupe and cucumber! Holler!

I sprung a leak!

Surgery will have to wait. I got some tests back last week and a call from the doc. There is a tiny leak in my pouch. We'll do another test and probably get the surgery in late September.

I am not experiencing any problems because it is in the part of the pouch I am not yet using. But if we reconnected I would leak into the rest of my body... not good. I guess it is better to be safe than sorry.

At least I'll be able to hit the beach without freaking out about a bathroom.

Sunday, August 16, 2009

For Sale: My Pride

This weekend has been pretty busy. We decided to have a yard sale. A friend of ours is moving and getting rid of some good stuff for cheap so we figured we'd clean out our attic and maybe get some money for a haircut.

I made signs on Friday before we had a pricing party- we obviously don't do these sales very often. Saturday, after rocking out to two of Eli's shows (one at Piedmont Park and one at WonderRoot- both awesome!), around 11:30 pm we biked the neighborhood to post the signs. It felt great to bike around while there was no traffic, just me and Eli and a cool breeze... We listed it on the Internet; we had all the bases covered. Haircut here I come!

Today, I woke up all crusty-eyed, set up everything and drank almost a whole pot of coffee by my lonesome! We had about 5 customers the whole day. I made a diminutive $9! Broken down hourly, I made $1 an hour! That is like slave labor! I guess that haircut will have to wait; hopefully not another 6 months.

At least someone bought one of my home-made rings. If I can sell 375 more, I can pay the mortgage!

Two highlights from the sale: The girls! :)

Wednesday, August 12, 2009

So close, yet so far

Today I was supposed to start volunteering. I say supposed to because I never made it there. About a mile from my house I started to break down-emotionally. Everything started to rush to the front of my mind: I didn't take out the recyclables, I couldn't change my wafer, I should have done one thing and I did the other... I just did everything wrong.

I pulled over and started to cry.

Why can't I be normal? What is so difficult about driving across town for a 15 minute meeting?

I tell myself that I have done so well; I have come so far. But I still haven't heard it.

Tuesday, August 11, 2009

Pain-er for life

Does everyone else live their life in pain? As long as I can remember there has been a stabbing pain in my abdomen. If it's not colitis, is that time of the month, or eating too much or too little.

I went for my gastrografin yesterday... PAIN. Really, they think it's acceptable to have me laying on my back with a tube up my bum and put my legs straight? Not happening. If the end result was not getting rid of this bag, I don't know if I would have signed up for this!

Lets be honest, I'm all about modern medicine and exams to find out what is going on, but they haven't come up with a better way to check this little pouch of mine? Do they do this just for me? Just to cause me pain? Sometimes, it seems so.

Hopefully we set the date for surgery two tomorrow.... not soon enough!

Wednesday, August 5, 2009

Reconnection Reconsideration

Since before my surgery I wanted the J-pouch. When I finally got it everything was better than it was and I was happy with it; Happy enough because I knew it was temporary.

I saw my surgeon today to set an appointment for my take-down surgery (AKA Reconnection). He is always very thorough in my decisions about the surgery. He mentioned that I could keep the bag if I was getting used to it; As I tell my mother, I told my surgeon, "I am not getting used to the bag; just getting better at it." I want the surgery.

Eli and I have been talking about it and now I am on the fence. This is what the surgery was intended for. The end result has always been the J-pouch. Now, thinking about all the trips to the bathroom, the fear of not making it, the search for the bathroom in every building I go in, I'm just not sure.

I have an exam on Monday to make sure I am healing well. The next step will be the reconnection.

I suppose I can take the weekend to think about all this. Why would he ask me that and complicate everything?!

Saturday, August 1, 2009

Adaptation

If there is one thing I've learned form my diseased colon, it would be the ability to adapt- constantly.

When I check in with Mom, every time she asks, "So, are you getting used to it," meaning the bag. The answer is always the same: I don't think one gets "used" to having a bag of pooh hanging from their belly.

I am getting better at it...

I have adapted to life with a bag just as I adapted to life with a diseased colon. I knew the flares were eventually going to come and eventually go. I'd stop drinking when I flare, and I would eat like a high school boy when I was in remission. And more often than not, I would limit my food to low fiber or even to clear liquids.

I've started visiting an on-line support group when I often hear new-bees complain about the diet restrictions. I can tell they are new because they have not felt the pain of high fiber or solid food during a flare. They'll learn and hopefully find solace in the words of other UC patients on that support site.

Eventually we all adapt. The new-bees turn into the seasoned veterans who offer the advice, tell the new-kids-in-town what to expect, and usually how some amazing seed or diet or oil or pill they took reduced flares. Once I thought of myself as the sick girl, then, I really was sick! Now, I am the bag girl and in a month I will just be me...

Although I am anxious to get this bag off and my intestine inside my body where it belongs, I may even postpone the surgery so I can have a long weekend on the beach with my bag buddy. Then again, maybe not. :)

Thursday, July 30, 2009

The single life

Eli has been out of town for a few days and I have been "single". Not like I do anything scandalous it is just different. I went to the store and bought all my favorite things... Meals Eli doesn't really like. And I wake up whenever (like 1pm or 10am). But I also had to deal with the rat!

Before he left, Eli set a trap in the attic because I heard some scratching up there... Ewww. I thought I heard the snap but I definitely didn't hear scratching the next night. So, how did I get the rat out of my house and into the garbage? I called my sister who asked her boyfriend to get it... I guess I don't ever really live the single life; I just include another couple! :)

Thanks guys!

Tuesday, July 28, 2009

Solo Wafer Change 1


Eli has been gone for like two days and I put off the wafer change an extra day just because I needed to collect myself. This was going to be my first wafer change by myself- ever. In the hospital I had the ostomy nurse and at home, I always had Eli.

Today is the day. I showered and gathered all my supplies; even extras just in case. I found, after two months of practice, that I am least "active" in the morning. I spread out my towel on the bed and got comfy.

The worst is pealing off the old wafer. Even after 5 days it is still really stuck to my belly. Once I got past that, I just let it breath while I clean up around it. I had no output while I was cleaning which is AWESOME!!! Normally, Eli and I have to wipe and wipe and wipe up the output. I cut the wafer to my stoma size, prepped the skin, stuck on the adhesive ring, and pressed it on! Perfect fit!

I love wafer change day!!! :)

Wednesday, July 22, 2009

Computer Clown

I think I should start looking for IT jobs. Both yesterday and today was spent fixing the Internet- Your welcome! :)

I told AT&T that it was their modem that was messed up. Sure enough, when the modem got here today, I set the whole thing up, wireless and all, and we are up an running. All day the Internet has been up!

Gosh, I'm good!

I don't make money but I sure know how to save it!

Yesterday was our first day back to the real world. Vacation is over and it's time to get back to work. First I had to call the mortgage company to see about a loan modification and a late fee. Since we never had a late fee they were willing to forgive this one! (Late fee= $63.22)

Next was my epic battle with the Internet company... not so easy. I spent the day trying to fix our broken Internet connection. I talked to four different people through out the day. The first lady hung up on me when I told her how ridiculous I though me having to pay for a technician to come out was. The second guy fixed the wireless Internet by telling me to plug in the ether net chord into my lap top! And the third guy said things like, "no one works for free!" It certainly seems like I am working for free today!!

The last guy got me to billing after I said I would find another company who would give me a modem and Internet that works. She was willing to overnight a free modem ($45 + shipping)! She asked if there was anything else... Yes, I'm not paying for the two weeks I didn't have Internet. She went ahead and refunded the whole month charges for me!

I am my mother's daughter! :)

Total savings for one day: ~$118.22! All in a day's work!

I can't wait to see how much we save when the loan modification goes through.

Monday, July 20, 2009

Good Genes?

During the family reunion, Eli mentioned that I have good genes. On both sides of my family, my grandmother is over 90 years old and show no signs of any major problems... Other than the cancer my family has battled (and won) and the digestive diseases, I guess we are pretty lucky.

I never thought my diseased genes would ever be complimented but Colitis isn't everything! :)


Not to mention how cute the next generation is!!!


Thursday, July 16, 2009

Road Trip!
















Some might think a 12 hour road trip in my condition would be hell... but it is a lot easier when you have a bag and are not rushing to the next rest stop! Also, the girls keep us pretty entertained.

I've been feeling pretty good on the trip. We made it to Michigan this afternoon and have already tried out the bag in the pool. I could do laps and everything. It is still hard to switch back and forth from the short bag and the long bag...

Better go get ready for the rest of the fam!

P.S. You can't even tell there's a bag under there! :)

Wednesday, July 15, 2009

Still awake

This sucks. I really want to sleep but every time I try I am so uncomfortable. I just can't fall asleep.

Tuesday, July 14, 2009

Ambient sounds

I come from a long line of insomniacs... Eli thinks I'm crazy and imagines me getting those hilarious tapes of soft sounds to whisk me off to dream land. I doubt it. Why spend money when I have the sound track for free!

Right now, I hear the cicadas, crickets, the bird on our porch and a train passed not too long ago. (I love when they honk the horn!)

Freebie of the day: Need sounds to fall asleep? Save your money- Open a window!

Monday, July 13, 2009

Another essay submission

Since I have no TV, no job, no kids, I have nothing better to do than play on the computer. Well, I have found some essay contests to apply to. This is my second one. The first one was for a CCFA awareness walk and I made it to the semi-finalists (I am still waiting for my booby prize!). Today, I submitted answers for Great Comebacks. It is harder when they ask questions and you are limited to 100 words per answer... They will make their decision by the end of September. Keep your fingers crossed.

If you are interested in the program here is the web site:
http://www.greatcomebacks.com/en/programs/index.shtml

I'll let you know if I hear something! :)

NEW*Not sure if I should publish this.

The first time I was hospitalized for UC, I was 20 years old and they put me on the floor with all the 80 year olds. After they transferred me from the Urgent Care to my room for the week, an on call GI came into my room. He introduced himself and the first thing he said was, "Don't worry, you can still have children." Then, it was a little odd. I had way more things on my mind, although the clarification was comforting.

Sadly, this comforting thought did not last. A few months ago, Eli and I found out some very exciting news: we were pregnant. My flare, at the time, seemed to be getting better. We were so excited about the news, we wanted to tell everyone. We kept it pretty quite for the first couple hours! We started to tell close family and friends just in case something happened.

We went to our first doctor appointment; we had our first ultrasound; we were due on December 15th. After we got the all clear from the doctors, we started telling our families. By week 8 I could hardly get out of bed. I couldn't walk from the parking spot to the front of the doctor's office. I ended up going to the ER for a short black out spell. He assured me the baby was getting all the nutrients before the colitis effected them.

Everyday I imagined what it was going to be like with the baby. I would sing to the baby. I planed our Halloween costumes to accommodate the belly. I really didn't expect to lose the baby.

That morning I woke up. It was the 13th of May. I decided to take a nice warm bath. Just me and the baby and some soft music playing. When I got out of the tub and made my way to the bed, I started to feel horrible cramps. It was not in my intestine, and it wasn't something I ate. I could tell there was something wrong with the baby.

I couldn't call Eli- he was in the woods with a school group and I really didn't want to worry him if it was just a belly ache. I called my sister and she came right over. When we got to the doctor, she examined me and all she could say was, "Yep, she's trying to miscarry." Emily looked at me with tears in her eyes and questions all over her face. She held my hand as the doctor did all she could to clean up. It was over in an instant.

All I can think about is what the doctors told me. They told me I could have children. They told me the baby was strong. They told me the baby was getting what she needed. They were wrong.

I try to talk about the pregnancy factually and lightheartedly, but when I'm alone, I still cry.

Sunday, July 12, 2009

Bike ride!


We did our first bike ride since before the surgery. When we bought the house, we liked the location because everything was biking distance. We didn't anticipate a hospital stay. So now I'm back on my pretty Dodger Blue bike! It was so good to feel the breeze on my bag!! :)

Thursday, July 9, 2009

Assault on my garden!

After Eli left for band practice, I figured I'd have a relaxing evening watering the garden and harvesting anything that was ready. As I head over to the garden I notice my cucumber at my feet. "Odd... that rabbit we've seen around must have gotten into our garden. Certainly a squirrel couldn't do that!"

As I approach the two garden boxes I see the destruction! All our strings were ripped in half; cucumber plant strewn all over the yard; tomatoes folded in half from the weight of the destructor; holes burrowed all the way to the natural soil, sweet potato plants uprooted and thrown to the side! No squirrel did this! I practically fall to my knees with vexation (I love my little pop up dictionary/thesaurus!).


As I look up, I am greeted by my sweet Ophelia; or so I used to refer to her as my "Sweet Ophelia"! The destructor had to be about 72 pounds, and have teeth at least an inch long!!! How could she do this to me? "Et tu, Ophie?" All the time I put into this, and the money! I was going to use that cucumber tomorrow. And our big mama tomatoes were completely ripped out of the garden box! The whole plant!


I spent the last hour trying to fix what Eli's daughter did! When she is good at the vet, she's my baby; when she kills mama's plants, she's Eli's daughter. I'll have to see what happens tomorrow to see if I saved anything. If not, back to square one tomorrow... at least we still have time left in the growing season. And with global warming, I might even be able to grow in to November!


(If you are asking how she got into the garden after months of nothing... I left the little side door open. I never thought she would walk through that narrow space... I accept the blame!) I don't know why she paid so much attention to the cucumber... they are spikey little buggers.

Wednesday, July 8, 2009

Shower desecration

I am not a fan of peeing in the shower. I think I tried it once and was so disgusted I spent the whole afternoon disinfecting the entire bathroom!

When you are sick, things have a way of changing out of necessity. For instance, while I was in the hospital I had to allow the nurse to empty my bag despite her ability to effectively empty a bag without spilling all over the place. I don't even pee in the shower, what makes you think I'm ok with pooping in my bed?

Well, today, out of necessity, I had to poop in my shower. I know most of my house guest will now opt for Eli's bathroom because of this... The problem is the skin around my stoma is starting to burn and become raw. This happens because, there is no sugar coating here, my poop just hangs out in this bag and can occasionally find it's way to my skin. The barrier often dissolves exposing the skin. Some times the seal is not right up against the stoma. I am not a dirty person!

I felt I needed to let it breathe- air out! I've been wanting to do this for weeks now but I am usually laying flat when we take off the wafer. So, I was in the shower, prepping for our wafer change and I decided to take it off... to take it all off! I could not contain myself. At one point the stoma shot a stream out, at least 3 inches from my body! It just dripped down my leg into the drain. I didn't know what to do. I ended up grabbing a bag and pressing it up against my belly until we could get me flat to put on a new wafer... This is not even half the battle but we'll save wafer changes for another day.

It was all too much to bear. I'll spend the better part of tomorrow bleaching down my tub!!

When I grow up


I just finished the book Bitter Is The New Black by Jen Lancaster. I heart this book! Anyone who has been laid off after a sense of security given to you by that now former employer, anyone who has an inner B (or not so inner B) inside you, a fashionista, I would imagine a Dot-Commer... would love this book. I would love to be Jen minus all the selfish, sorority, over indulgent and mean parts. She was laid off, started writing to blow off steam and became publish- by a real publishing company. She just finished her fourth book this year!

A good friend let me borrow this book after the surgery. I trust her judgement especially with books- not to mention her part time job at a book store is lovingly referred to as the "Literary Prison". She knows books and she could not have found a better one for me to read right now.

Eli always asks me what I want to be when I grow up. He has all this ambition and all these plans for what he wants to do with his life. Other than being a mom, I never really knew what I wanted to be. I mean, I could be whatever pays the bills. If I did have a family, maybe I would be a teacher just to have summers off. If I needed more education- I would go back to school. I don't live my life at work although I try to learn from every job. I just never commit to anything (other than Eli :). We always talk about me writing more but would people want to read what I write? And more importantly, could I get paid!

I have been active on some medical posting sites over the last 6 months. I see the people who have questions and I find people who have the answers I need. I know I would want to write about the UC and all the problems that came with it and I see people who could possibly be interested in it.
The ups and downs are more common than our doctors would let on.

All I need is a clever title, the right marketing and, of course, an editor... What do you think? Could I really turn this blog, along with all my stories, into a real book?

Tuesday, July 7, 2009

No stoppin' us now!



We set up an above-ground pool today. Hot fun in the summer time! Watching my nieces play in the pool while the sun was beating down, I had to join in the fun!!!

I put my two piece on and jumped in! The nurse told me swimming would be fine but it works best with a one piece or tankini. I don't have those... And let me tell you, it works just fine with a two piece! :)

I didn't get to do laps but we can test that during my trip to Michigan. I'll let you know.

120

Last night I weighed myself even after eating that great food described below... I lost 4 pounds. I know I don't need to keep track of the pounds because if I'm feeling better, I must be getting better... but still.

Organic Grub!


We started our garden so long ago- like in April. Yesterday, I was so excited to make our first side dish from the garden. Up until now we've only gotten tomatoes from our garden- which helps a lot because tomatoes are expensive!

For dinner we had patty melts with our tomatoes on them and a side of fried cucumbers! And Eli doesn't even like cucumbers! He ate all of his last night. It was so good.

Recipe:

I just picked the cucumber from the yard, peppered some flour, mixed egg and a little milk together and mixed panko crumbs with season salt and pepper. I cut the cucumbers like fries because it was so long! Dredge the cucumber spears in the flour, the dunk in the egg mixture, then coat with crumbs. Deep fry (I'm sure you could pan fry as well), once they cool down, enjoy with ranch dressing! :)

Monday, July 6, 2009

Solo Drive

Friday was my first solo drive since... April, I think! Of course it was to the pharmacy to get some pain pills. I felt good.

I planned the whole thing. Driving is no little task for me these days. For starters, I have to put the lap part of my seat belt behind me (is that even safe?) so it won't rub on my stoma. I have to plan all my trips around when I take medication that could knock me out or make me loopy. And of course there is always the fear of not getting a parking spot close to where ever I am going and passing out in the parking lot!

I had my water, a breakfast bar, and Ophie (always! She loves drives). I went the back way just like I used to go to work (I know that route best). I pulled up to the pharmacy: ROCK STAR PARKING! Right in front of the door. I adjust the windows for the puppy, grab my purse and lock up the car.

I take the four steps to the door and the auto door won't open. Now to me I'm thinking the power went out again (as it has been every week around noonish). I even tried to slide the door open myself. Then I notice the HUGE paper on the door: Kaiser Pharmacy will be closed for Independence day on July 3rd and 4th.

Booooo! Of course. Because I had it all planned something had to go wrong! I'm just glad I had enough pills for the weekend.

So, I got back in the car and treated myself to a Starbucks and cheese bagel!! It was so worth the trip! :)

Saturday, July 4, 2009

124!!!

I love that every time I post my new weight I get an ad for getting help for an eating disorder! :) hahaha...

Awkward!

I have always had a little social anxiety. Over the last seven years it really got bad- to the point where I found myself in a chair talking to a "doctor" asking about my childhood!

I thought it was better but I think I jut learned the right questions to ask to get me prepared for what I would face later on in the day. I've skipped dinners because the restaurant was new to me; I've missed out on parties because I didn't know who was going to be there or the bathroom deets; I passed on trips because I haven't taken those roads before... Now I ask- where is the bathroom, how many people are going to be there that I know/ don't know, and who is driving because it's not me! :)

With the bag, it has just opened up Pandora's box! I have to find a whole new set of questions before I decide to go out. And when I do, I am such a freak about what people think that I try to just get it all over with. The second I see someone I know I ask, " Wanna see my bag!" And then I launch into my explanations of all the scars and what the next surgery entails. I can't tell you how many times I've lifted my shirt (just enough to show the bag- don't get excited!) to show off my new hardware just to deflect my true discomfort with it.

It isn't easy. It doesn't get better- like they all say. You don't get used to it; you probably just find the right questions or answers to give. "I'm feeling much better..." But I still feel like crap! And on top of that, I have low self esteem and feel self conscious about the ballooning pouch affixed to my belly and the uncontrollable butt leakage, hopefully getting caught by the miniscule pad "safely" secure in my panties, until I move! It always a gamble... "Wanna see my pouch?"

I just feel like people aren't looking at me trying to catch a glimps or a sign of what I've been through. This way I can just get it out in the open and forget about it. I guess it is just my new nervous tick.

Restless

It is 5:43 in the morning and I have been up all night. I am not sure why. It's been No Good Sleepin' all week :)...

I feel like I have restless leg. I know, I sound crazy but look at everything I have had wrong! RLS is not that much of a long shot. I heard people have RLS symptoms because of anemia- which I have (documented by doctors, thank you!).

I just want to sleep. I can't sleep on my stomach- my preferred- because of the bag. I tried to prop myself up on pillows and let the bag hang but that was a no go; 1 the bag got heavy and 2 my arm started to fall a sleep tingling. When I sleep on my side the bag slides, and I'm ok with that but then my legs start to tingle. On my left side I have to use a pillow to stop me from rolling over onto my bag... Sheesh! This sucks.

I am so tired. I just want to rest my body. Maybe two pain pills will do the trick?

It doesn't help that I can't be gently sung to sleep by the hum of the television and laughter perhaps from Conan... who's idea was this whole digital switch anyway? Stupid converter box!

WOW! The birds are already awake- and it isn't even our little owl friend in the back! :(

I guess I'll surf the net. Good night!

Tuesday, June 30, 2009

Rock and Roll

I made it out to the Last Friday Show at Wonder Root. Eli was playing so of course I would do anything to be there!

It was a great night. I felt really good. I couldn't wait to tell everyone about how I showered all on my own; Some looked at me like I was crazy but most shared the excitement. Half way through the night I had to pop a pill. That lead to a whole new level of fun! I started showing off my battle scars from the surgery! It's like my new party trick...

One bathroom visit. Because of the last time I visited this bathroom and the chaos that ensued, I made Emily stand look out. That just might work. She does pretty well at her post!

Now all I need when I go to the bathroom is my gloves and my sister. I'm still working on that sign!!

Friday, June 26, 2009

Tots, screams and friends! Good day!

Yesterday was a good day topped off with some good scary movie fun!

Kat and Bethany brought over House of 1000 Corpses, faux BLTs and some hot Tots! If that doesn't sound like an awesome night, I don't know what is! Great movie. I am so excited to see Rob Zombie's Halloween!!! I really hope we can do it after the surgery.

On top of all that greatness, I did not take a single pain pill the whole day. I'll admit, I had to take one to sleep but that counts as night. :)

Add this to the good day column and keep 'em comin'!

Thursday, June 25, 2009

Lets get it together CCFA!

The day I came back from the hospital there was a big envelope in my mail box addressed to ME! It was from CCFA (The Crohn's and Colitis Foundation of America). I thought it was like any other mailer they send out that always ends with them asking for money.

Not this time! The wrote to inform me that I was a semi-finalist in an essay writing contest about UC Success! I was getting a gift card for like $25 in the mail and they will inform the winners at a later date.

Well, the prize is a trip out to OC, California! That's what I wanted. You go to the CCFA Walk and talk about what you've been through and tips to help others get through the disease. Sounds like a perfect job for me. The Walk is this weekend and I still haven't heard anything. I haven't even got my gift card yet! What's the deal?

I get it; I didn't win the trip. But at least post the winners on the web site! They still have last year's winners!!

Maybe next time.

Ewwww

So, if you don't get the wafer right and you cut it too big you have exposed skin. Now think about what happens inside the bag: Pooh comes out of the center of the stoma and either drops into the bag or gets stuck around the reservoir that is the wafer. So, pooh can just sit on that exposed skin. You change the wafer like every 4 days or so.

This morning we changed it and all the skin around the stoma was red and like burning off! Eww is right! Thankfully we found this stuff that is supposed to create a crust- like a scab. Well it is a two step process and we were only doing one step- needless to say, it got pretty bad.

But we are all good to go now!! I love new wafer day! I feel so clean. :)

Wednesday, June 24, 2009

118

So, we always track my progress with my weight. I don't know if that is as accurate with a bag as with colitis.

I'm 118 now. I promise I'm eating. And not even great food. I am eating more veggies than before but it all comes out so quickly.

Do you think I'll always be this skinny? I don't know if that is a good thing or a bad thing. I really like the way my jeans fit, even if I have to fold them down to avoid the stoma. But people are starting to think that Eli and I aren't eating. He has been going through sympathy weight fluctuation for the last year or so. That is true love! :)

Well, at least I am up one pound from last week. Maybe this is our steady increase?

Oh, to be a puppy!

I just got a post card from Ophelia's doctor informing us that it is time for her up dates. Now, as a human, my medical bills have increased as I get older. But the puppy's have come down significantly in cost per year.

When we first got the big Oph (you thought that was a cute nick name, you didn't realize where it was going...), she was eating bees and getting stung in the face; scraping her head under the deck; falling off cliffs on her hikes with daddy! It seemed like every week we had to take her in for something. Either she got smarter or we stopped caring.

One time we had to take her for a flea infestation-$90 for three pills!!! You better believe we give her Frontline every month now.

...Maybe we got smarter! :)

Now if we can just get her to come back to us when she escapes.

Monday, June 22, 2009

I met Joey Cape!


The hardest thing I've had to deal with is the fact that the people who love me and want to help will never truly know what it feels like to have Colitis (or not have a colon at all...)

One thing that has gotten me through some really hard times is a song by my favorite band, Lagwagon. The song basically says you can't depend on other peoples' content or happiness to be happy for yourself. "Find inner strength" because no one else can find it for you.

Last night was the highlight of my year. The singer from Lagwagon, Joey Cape, was performing at the Earl here in Atlanta. We weren't sure if I'd be able to make it to the show; and then there is always the concern about seating. I would not last one set without a seat. All day I was feeling crappy but I just kept telling my self, "You can do this. You will go to the show no matter what!"

After a nice dinner at the Moerlins' house with friends, Eli and I headed to the Earl. Low and behold- there was plenty of seating for my crippled self! We sat just to the side of the stage and an hour later... Joey came out!

His set was awesome. He played some solo stuff, some Bad Astronaut stuff and some Lagwagon. Our friend who knows Joey from years ago told him we wanted to meet him. We waited around while Joey ate his dinner after the show. Finally, he came out and started packing up his stuff. We walked over and shook hands.

Eli, milking the situation for all he can, tells me, "Show him your tattoo!" The one dedicated to the song Joey wrote that got me out of bed all those times I just couldn't fight anymore. So, I played the disability card! I told him that I have a disability and Bombs Away is a song that really got me through the hard times. You can't pass up a skinny girl talking about how your song got her through her disability! He gave me a BIG hug and said, "that's great!" I got a picture and he signed my poster and I got another hug.

I grew up in Los Angeles and I don't get star-struck but after I met Joey Cape, I was smiling ear to ear. When I was talking to him I stumbled over my words. I couldn't believe I was talking to what I consider to be one of the most talented writers of modern music.

I guess it's not always bad to have a disability! :)

Monday, June 15, 2009

Really? Is this my life?

So, I would love to be that girl that takes everything in stride and can totally deal with the problems of real life. But I'm sorry, is this really happening to me? Maybe I should just stay at home for the rest of the summer until this bag is gone...

Last night, Eli, Em, Stephen and I decided to go see Drag Me To Hell (hilarious!). This was going to be my first movie in almost a year and my first multi-hour outing with my buddy, the bag. Eli and I ate before hand because we knew we couldn't afford the $15 hot dog at the concession stand. Of course we made room to share a pretzel and drinks.

This Icee was the size of my head! No joke; a medium! I had to hold it with both my scrawny arms just to drink it! But I'm getting ahead of myself...

Before the movie, Em and I cruised the mall. Window shopping because every place in the south closes super early on Sundays. While sitting on a bench outside the Old Navy, my buddy starts getting kinda full with gas. No biggie except it makes it really uncomfortable with jeans on, no matter how low rise they are. So, we are outside; no one is around. I'm going to burp my bag. Just to get a little gas out. I lift my shirt, pull the tab FOR BURPING and release some air. No one notices, everything is Kosher!

Now we go to the movies, get the drinks, eat the pretzel and head to our seats. After all the commercials and previews the movie starts. It is hilariously redic. But enjoyable. I drink and drink and drink. I notice my bag is quite full again. Must be air right? I go to burp it and I feel my warm waste flowing over my muffin top and on to my back and down the top of my jeans. Holy crap! I just pooped my pants in a movie theater! REALLY? REALLY, COULD THIS BE HAPPENING! Of course I tell Eli and he offers to take me to the bathroom. When he sees the utter look of defeat in my eyes he reminds me to just hold it together until we can get to the car. I decide to take Em to the bathroom so she can work the crowd in the bathroom should there be a need.

We get up and haul buns as fast as my emaciated legs can go! First we can't find the bathroom- that place is like a damn maze. Then we realize it is all the way by the concession stand-where EVERYONE IS STANDING! We finally get in there and there are like 2 women in there- no biggie. Then, all the toilets have urine on them or poop in them- really people, if you can't flush a toilet you don't belong in public! Ed Begley, Jr won't kill you for not obeying the three-pee-flush rule in a public restroom!

When I finally find a suitable stall, I begin to strip and find that my powder pink under wear are bright, Icee red! The solid waste must have followed the laws of gravity and sunk to the bottom of my bag while the red dye number 9 Icee floated to the top! I don't smell like poop. It doesn't look like poop. I'm saved!

I empty the bag and contemplate what to do with my wet under-roos. I am not putting them in my bag... I dry off, stick some extra TP where I "Spilled" and I am going back to this movie! I did not spend all that time convincing Eli that it would be a fun outing to see half a movie and jet because of a liquid burp!

I finished the movie. I even walked all the way to the car- It took while but I did it! I even did stairs!

So, the moral of the story is don't burp unless you know its air! And, I guess things aren't always as bad as they seem. You live; you learn.

Tuesday, June 9, 2009

Privacy VS Stalls part II

While in Georgetown I went out to my first restaurant since the surgery. Of course it was Mexican! I love Mexican food. With all those chips and salsa I knew I would have to empty before we left. And I did. I escaped to the bathroom and to my dismay, it was a single bathroom- no stalls.

Now before, all I wanted was a single bathroom with some privacy. I could do my thing, and walk out like nothing happened. Now, things have changed. It takes a while to empty a bag and clean up and all that... I have a little supply bag with gloves and air freshener and everything I might need. It is no easy feat.

Right when I sit down, I hear someone try the door! Great! So now I'm rushing. At least we didn't have a recap of the gas station! They try the door again. I'm trying to hurry! Cuff, drop, clean, clean, clean. They don't even knock- they go straight for the "Hello?"

What do you say to that? Obviously someone is in here and not having a great time. Even if they were having a great time in the bathroom, would you really want to interrupt that? Sheesh!

Then it is the walk of shame... leaving the bathroom knowing that someone has been waiting outside the whole time and will identify you. Not like I'd know them or would ever see them again... but still.

I feel like I should keep a sign in my supplies bag that says something like, "Will be done at..." and have a little clock on it with movable hands I could customize. Or have it say, "I know I'm taking a long time, I have a medical condition- Please just wait or use another bathroom." Maybe just an "Out of order" sign...

I am not going to just use stalls... I've gone through too much to limit my restaurants!!

Three months and it wont matter... three months.

Saturday, June 6, 2009

First time out: DISASTER!

Eli's youngest brother graduated high school this week. I remember how important it was for my family to be there during mine and I was not going to keep Eli from being there for Dylan. We made the 6 hour trip to Georgetown. It was not easy... or fun. In fact- it was a disaster.

We stopped at a gas station when my bag was full and the tank was empty. Eli drove right up to the door so I wouldn't have to walk too far... and let me tell you, that little step up, not so little when you have no leg muscles. I pull the handle to the bathroom... locked... I see an attendant and ask if we need a key, all the while holding my bag and my little supplies clutch. She pushes the door open without a word.

OK, so I start to settle in.... Thank God there is a toilet seat cover (I hate when I have to line). I sit, take the clip off and dump! OMG! I DIDN'T CUFF THE BAG!!!! If you don't cuff the bag before you dump, all the waste is at the end of the bag... and it's just not clean! I can't believe I forgot to cuff!

Well, I have an extra bag with me, or I could try and clean it... ABORT! Just abort the bag and get a new one... Well, I should try to keep it... they are expensive. So, I decide to try and save it. I have my gloves on and start working away... And of course I get waste all over the bag. There is no saving this!

I pull the bag off and I am still actively going... The wafer kind of gives a little reservoir before it runs all over you stomach. So I'm wiping and it slows. What do I do with this dirty bag? I just drop it on the floor... I just can't deal. I grab a new one and seal it up. I just sit there looking at the bag on the floor... how much do those cost? Should I throw it out, really? I just have to get over it.

Someone tries the door outside... OK, get going. I clean up and throw the bag away. I wash the gloves; I wash my hands. And I see it... AIR FRESHENER! I pop the top, which is not easy when you can't use your abs... And there is no spray thing on it... Whatever, I'm over the smell. I just try to make it pleasant for the next person.

I am so wiped out by the time I get out of that bathroom Eli has to help me to the car. What a day! And now we have 4 more hours to go in the car...

Tuesday, June 2, 2009

Take the good with the bad

Today, I'd say recovery is going really well. Yesterday, I would not have answered. It was a rough day. I woke up shivering; temp 103.8. I knew it had to just be the prednisone or something- I was not going back to the hospital because of a temp in the morning.

I just drank water and juice all day long. Soup for lunch. Nutrition drink for breakfast. Drink. Drink. Drink. By dinner time, I was fine. I ate my first salad. Oh, it was soooooo good. It was like a buffalo blue salad with crispy onions. Just like heaven. I still have half of it saved for today... I can't wait for lunch.

This morning, no chills, no sweats. I didn't even go to the bathroom in the middle of the night... I can't remember the last time I slept through the night. I did some exercises in bed... working my way up! Still no weight gain but I got plenty of friends who are working on that!

Today is a good day.

Friday, May 29, 2009

120

I got on the scale today... 120. How much does a colon weigh? I need to eat more. Although, this will probably be the last time my weight will fluctuate so much... Might as well enjoy it! :)

Thursday, May 28, 2009

Jackpot!

So, we've been home from the hospital for a couple days now and we are still trying to get used to the new hardware. But I have to say, I really hit the Jackpot with Eli. In the hospital, nurses and patients all said that it is really difficult for your partner to deal with the bag. Eli has been there before the colitis and after the colon and he is a champ!

Last night, I showed him how I empty and clean it and everything. He was totally there for support and didn't throw up! I feel so lucky to have so much love and support from the man of my dreams. We're in this together- no matter what.

Bathroom visits at night:2! :)

Monday, May 25, 2009

What goes in must come out!

So, I am doing really well considering I don't have a colon!! Recovery is nice... when you don't have to do anything. Tubes all over the place that feed you and drain you and take your pain away... But at some point all those tubes have to come out... Today was my day!

You don't know how they get there, some of them you don't know why they are there but you know when they come out! My day started with removal of the catheter- not bad; not good... Then a little drainage bulb and finally my IVs are disconnected! Ahhhh freedom.

I'm walking around and able to get to the bathroom (to pee!) by myself. It's a good day.

I realize this title could also work for my little pooh bag but I'll fill you in on that later...

Friday, May 22, 2009

The big day

Today is the day I get rid of the thorn in my side; the pain in my butt!

It's not going to be fun to recover from but it will be a lot better than what I've been through. They expect me to be in surgery for three hours to start... it could take five hours! I just hope Dr N got some good sleep last night!

This is the end of my old life. I'll be lucky enough to take with me the experiences I've learned and all the pains I've dealt with but live the life I had before the pain, worry and hurt. Today, things change- for the better.

Wednesday, May 20, 2009

Athletic Heart

So, today's big deal in the hospital is my slow heart rate. The are running all these tests and when I ask if it is a problem, they all say, "Actually, it is good to have a slow rate. We just need to make sure everything is in order."

Ok, so check it out... it should be no problem for the surgery which has now been changed to Friday. I talked to a cardiologist who asked what have I done in my life to give me a slow heart rate. "You must have ran track, or basket ball or something?" Nope- Really no regular exercise. I probably exercise less than most people.

She claims some people are just born with athletic hearts... I'm one of them. Don't tell Eli-he'll be so jealous!

Tuesday, May 19, 2009

Great news!

I'm in the hospital- that's not the great news...

Saturday night as Eli was getting ready to play some music, he leaned in to give me a kiss and noticed I was radiating heat. We took my temp and it read 102... twice. So, we called the nurse and after conversations back and forth with the doctors through the nurse they ended up on me going to see the after hours. After hours decided to send me to the ER for admittance to the hospital.

My blood count was really bad. I had three blood transfusions before I started to feel any better. I am on a constant IV drip and a clear liquid diet and still have symptoms.

The good news is I could have my colon removed as soon as Thursday! I have been looking forward to this day since my first hospitalization. I have researched and talked to people online and real life. I really think I'm ready.

As my dad put it- I deserve a break from all the suffering I've been through. And if taking out a diseased colon is the way- I'll take it!

I have been feeling better the last couple days and hope that all the test come out giving us a green flag to get me a J Pouch!

Keep your fingers crossed. I'll update as I can!

Saturday, April 25, 2009

Eli's Birthday wish

Eli asked for a few things this year but the most important slipped through my fingers last night.

Eli had a show at WonderRoot for his birthday and invited some of his favorite bands. Yard Work, the headlining band, could get anyone to dance. But not me; not last night. All Eli wanted was for me to dance with him to a Yard Work song...

I went to the restroom while the band just before YW was loading up... I didn't know them and wouldn't mind sitting in the bathroom for their set. I was of course interrupted... the person on the other side of the locked door actually said, "Ooops... I'll wait!" You'll wait? Listen, I was prepared to play the waiting game because I knew I would win... I could wait all day. But, I gave in and finished up, washed up and left. I still had to go. So I drove all the way home (Like a 10 min drive...) and used my own bathroom in private. No one around, no one waiting... Then my cell starts going off... Everyone is worried about me and wants to know how I'm doing...

As I pulled back up to the venue I heard music coming from the basement... It was Yard Work and Eli was at the front of the crowd. I cought four songs from the chair in the back while Eli danced with all our able bodied friends.

Maybe next year Eli? :(

Thursday, April 23, 2009

NEW*Big news

So, I thought I was just having a "different" flare up. The last few weeks have been pretty hard. I just get tired and feel weak... Not to mention the bathroom visits. I found out this weekend it's not only a flare... I'm having a BABY! :)

I took a home pregnancy test and saw a nurse on Tuesday. Positive! Now we are just worried about telling people in case something happens.

I have always tried to research Ulcerative Colitis as best as I can; new info or drugs, treatments, diets, everything. The only stuff I can find on UC and pregnancy is 1 it could stay in remission as long as you are in remission, 2 don't get pregnant if you are in a flare... Well... what do you do when you get pregnant and you are in a flare? I guess we'll find out in the up coming months.

Wednesday, April 22, 2009

Sick... again

8-10 bathroom visits a day. Waking up in the middle of the night. No wonder I sleep all day.

Thursday, April 16, 2009

Shame on me...

Now that I'm unemployed I try to keep myself busy by cleaning, job searching, gardening... but sometimes I just can't get off the couch. So I turn to my iPod for games or I do Sudoku. I have one of those books that lets you choose anything from "Light and Easy" to "Beware! Very Challenging!"

I usually work my way up to "Difficult" after a few hours of "Light and Easy" and "Moderate". Last night, I hit an all time low... I cheated on Sudoku! I was on a L&E and I got stuck. I just couldn't do anything... I caved and looked at the key in the back. I'm not talking about getting one or two numbers... I took 2 rows! I started out with a couple numbers but nothing would get me going again. I had to take the rows to complete the puzzle. So sad. I can't even do an easy puzzle.

I use the puzzles to feel a sense of accomplishment since I have nothing going on... all I feel is degradation and shame!!

Oh well, I have 399 more puzzles to go!