Not so Good Holidays

We went to the cabin for Christmas, as we do every year.  I enjoy the time with my husband's family.  But I had such diarrhea there that it was annoying.  I felt like I was always in the bathroom.  It hasn't really stopped since we've been home, either.  I did my pill camera endoscopy on Wednesday, and it went completely through my system in less than 7 hours.  I had such butt pee that day.  The only reason I knew it had passed was the blinking light in the toilet.  This disease leads to such charming things.

Now both my husband and I are dealing with colds.  When I have a cold, I snore.  And it drives my husband crazy, even though he snores whenever he doesn't use his CPAP machine (which he forgot to bring to the cabin).  So last night I slept on the couch, which meant I didn't get good sleep at all.  So today, I'm home with my son while my husband is at work, and I am exhausted and suffering from a cold on top of the issues I'm having with my Crohn's.

Holidays

I haven't updated in a bit.  I went to my doctor's appointment a week ago, and he basically didn't have any advice for me.  Frustrating to say the least!  He put me on amitriptyline which can help with the pain.  It also exhausts me, which is something I didn't need more of.  I sleep so much more in the past week than before.  I did the "Agile test capsule" for the camera capsule test.  It passed without incident.  I swallow the pill camera on December 28.

My blood tests came back negative for celiac.  I am very relieved at that.  The doctor didn't think it was celiac because he said he saw no death of the villi which is usually evident, but he wanted to verify that was the case.  I guess that means the Crohn's is in the start of the small intestine (at the very least).  So since I've had sores in my mouth and throat in the past, and ulcers from the terminal illium (when I had it) throughout the large intestine and in the rectum and anus, it seems as if the Crohn's pretty much covers my entire digestive system.  The doctor at the Mayo clinic told me it doesn't spread, but if you have it in one area, you always do, but sometimes it flares there and other times it is quiet.  That scares the crap out of me (no pun intended).

So it is the holidays, which are often quite stressful for me anyway, but this year being sick and trying to decide about work are making it worse.  My son's school had the Hanukkah dinner on Tuesday night, which was the first night of Hanukkah.  I wish it had been a different night, as it meant we couldn't do our normal family tradition.  My son loves the Kindle Fire we got him.  But he was up very late that night and the next day was a field trip at school.  I volunteered at both and felt miserable, but my son really loves when I volunteer at school, so I do what I can.

Now we're getting ready to go to my husband's family for Christmas.  I enjoy going, but I feel so awful that I worry about it.  I hope it is fun, but I also hope I feel ok.

Letter from Work

I got a letter from my employer on Friday.  It basically says that I'll be exhausting my short term disability soon, and that if I don't know with a reasonable certainty when I can return to work, my employment will be terminated.  I kind of figured this would happen, but it still unnerves me.  I've worked there for over 12 years.  It is the longest place of employment I've ever had, and it is a good employer for me, because of the short term disability coverage, and being a large corporation that has pretty good leave policies.  I can't return to work, however, knowing that if I did, I'd be missing at least 2-3 days per week being sick.  And I don't know when I'll feel better.  So I guess it is all over for me at that job.  I didn't particularly love the job, but I liked the security (and getting paid).  At least I have the long term disability coverage.

I've been in so much pain off and (more) on, that I am starting to think this is normal.  And the pain is exhausting!  It really tires me out.  It makes living my life so difficult.

Results not what I expected

I had my colonoscopy and upper endoscopy on Tuesday.  The prep was hell, but my doctor gave me enough pain medications that I didn't really feel anything when he did the tests.  Of course, that also meant that I didn't realize what he told me afterwards.  When I got home, I slept until around 6:00.  When I woke up, I couldn't remember at first if I had had the tests yet or not, or if it was 6:00 in the morning or evening.  I checked the clock, and it was in the evening.  So I called my sister, who was with me after the exam, and asked her what the doctor said.  She related that he told us that the large intestine showed no ulcers.  That was good news!  But it didn't explain why I still have symptoms.  He also said he took some biopsies during the upper endoscopy, and that I should get the results in the next few days, and they'd be sent electronically.  Then I spent the entire night vomiting.  I hate what pain meds do to me!

Instead of getting results electronically in a few days, I got a call from Tiffany, his patient coordinator the next day, saying that the doctor got my biopsy results.  It is never good news when they call you right away.  That is a given.  The first thing she said is that I have a condition called duodenitis, which according to the doctor, is caused by excessive use of aspirin   However, I haven't taken aspirin in years.  Maybe 10 years or more.  I might have taken 3 or 4 ibuprofen in the past 10 years, but no more.  So I have no idea what that is about.

She also said there was inflammation in the beginning of my small intestine.  It could be from Crohn's or from Celiac Sprue.  I really REALLY hope it is the Crohn's.  I don't want to give up pizza!  And honestly, it is more than enough to deal with Crohn's, I don't want to have to eliminate gluten from my diet.  But I'm getting ahead of myself.  I will have a blood test after my appointment on Wednesday to see if it is Celiac.

I also get to have a pill cam test.  This pill cam test is a huge pain in the ass!  It involves first taking a "fake" pill cam to make sure my system can pass it.  This fake pill will eventually dissolve.  Then I have to do an 8 day bowel journal before I can do the actual test.  The test involves going to the doctor's office first thing in the morning, taking the pill, and then getting a special belt that will receive the pictures transmitted by the pill camera.  Then I have to follow some clear liquid diet restrictions, then at the end of the day, I get the belt removed.  It is all very annoying.

I also got a call on Wednesday that my long term disability claim has been approved.  That is such a weight off my shoulders.  I got the call from disability before I got the call from my doctor's office.  I was sure that once they got my colonoscopy results, they'd cancel it, even though I'm still having symptoms.

I'm still unsure what to think of the results.  I don't get the duodenitis, and I hope it is not celiac.

Do. Not. Want.

Well, I have another colonoscopy on Tuesday.  This is the second one this year, having had one in early July.  I wish there was some way to make the prep less miserable.  I'd settle for unpleasant.  Drinking all that crap, then crapping all that crap.  Ick.  And I always vomit from it.  Today I am making a conscious effort to drink twice as much fluid so that the IV might not be such a miserable thing and it might not take more than 2 or 3 attempts.  This is a special event, too, since I'm also getting an upper endoscopy.  I think I'm going to ask them to make sure I am 100% out for these.

Since tapering on the Entocort I've had increasing pain and increasing D.  Lovely.  I hope the tests next week show something that can be easily fixed, but I think that is a fool's hope.

Feeling Good leads to Feeling Bad

I've been having a string of relatively good days recently.  Most days, I've had little pain and little D for about 4 days now.  Until today.  I've been having some severe pain off and on all day.  I didn't really want to eat, but when I finally got too hungry, I had a bagel.  That was a mistake.  But I can't just not eat ever again.  I wish that could happen, though.  I also wish I knew what was going on.  I guess that will wait for next week, when I have a colonoscopy and upper endoscopy.  But in the meantime, today has sucked major suckage.  I don't want to eat, so I don't want to make dinner for my family.  I have almost no energy, so last night's dinner dishes are still dirty in the sink.  I should have gone to the grocery store today, but I didn't, which means I have to go over the weekend, something I don't enjoy.

I have to start my low fiber diet today for my colon prep.  It isn't much different than my usual diet, except what I prepare for my family.  It is hard to find meals everyone will eat, with my son a vegetarian, my husband a "meat and potatoes" kind of guy and me not able to eat a lot of fiber.  I usually make pizza about 2 or 3 times a week, as I can make one with pepperoni for my husband and one with just cheese for me and my son.  But I didn't get to the store, and I don't have any pepperoni.  I don't think I have enough mozzarella for pizzas.  I guess I'll have to wing it.

How Much Poop Can One Body Produce?

It seems like I'm going for some sort of record of going.  I've had lots and lots of D today, and most of the time, it isn't a small amount.  I guess all that eating I did on Thanksgiving is catching up to me.  I am having pretty intense pain tonight, but as it is really sharp, but only for a few minutes at a time, I am going to just deal with it instead of taking a pain killer.  I might try a heating pad, but then it will be pressure on my abdomen, which is its own sort of pain.  When I try to explain this to my husband, he rolls his eyes, as I am sure he is so sick of me being sick and thinks everything causes me pain.

I can't wait for my husband to go back to work and my son to go back to school.  If I were working, I'd want the long holiday weekend to last, but now I just want to lie down and cry in peace and quiet.  It is always harder when their home.  They know I'm sick, but they still expect me to be like usual.  It is just a bit harder for me.  I try to do as much as possible for them, but it isn't always easy.  Today, my husband took my son to the zoo and they were gone for about 5 hours, and it was still hard on me.  Oh, well.  I guess it isn't so bad.

Thanksgiving

Today is Thanksgiving and I have so much to be thankful for.  I have a wonderful husband and incredible son.  I have a large family and for all their faults, I love them all very much.  We have a comfortable house and always have enough to eat.  We have enough money to pay for our needs and even some left over to pay for some wants.

However, with all that, I wish I had one more thing.  The one thing I wish I had more than anything else.  I wish I had good health.  There are so many things I would trade for good health, but it isn't the kind of thing that can be bought or bargained for.  Some people can improve their health by changing their lifestyle but that won't cure me.

I tapered on my Entocort on Monday.  I could feel it by Tuesday and by today I am miserable.  I had a lot of fun with my family, and we ate good food, but I was in the bathroom 6 times in the 6 hours we were at my mother's place.  The toilet paper was like sandpaper on my hemorrhoids, so on top of the horrible pain and D, I have inflamed hemorrhoids, too.  When we got home, I took some pain pills, and I can feel them effecting my thinking.  Once my son goes to sleep, I might try to take a sitz bath, as that helps some with the hemorrhoids.  Even though I hate taking a bath it is one thing I do that works.

Yesterday was special person day at my son's school, and besides my husband and myself, his special people were my mother and my brother in law and niece.  He loved getting to show them off to his friends and teachers.  I feel very blessed for his school, as it is such a great learning environment for him, and it is a great community for our entire family.  In fact, Tuesday night, we had a mom's night out.  In the end, only 6 of us could make it, but we talked and laughed and shared until close to 11:00.  It helps sometimes, even when I feel miserable, to socialize like that.

Monday I had a phone conference with my long term disability case manager.  I hope they approve me, as I think going back to work will just result in me having to go out on disability again, and in the meantime, it would be that much harder on me.  I honestly believe if I go back to work, I will probably end up back in the hospital, as the stress of working, and the inability to take it easy when I need to will lead to my Crohn's getting even worse than it is now, and that is saying something.

I hope everyone had a wonderful holiday and realizes how truly blessed we are.

Snow!

We got our first snow fall of the season yesterday.  Originally, we were supposed to only get rain, but instead got just over 2 inches of snow.  My son is very excited about it, and has spent hours already playing in it.  Too bad we never got the leaves up before the snow fell.  This should melt in a couple of days, as it is supposed to be near 60 degrees by Wednesday, so at the least we will be able to get the leaves off the driveway.  If not, it will be near impossible to shovel this winter.

I've been doing mostly ok for the past few days.  Not too bad, at least.  Until today, and the return of the butt pee.  I am not happy to see it back.  I've also been wondering if for "normal" people, BMs hurt.  I'm not talking about butt pee or even D, but relatively normal BMs.  For me, even when I'm down to two or three BMs a day, mostly formed, they cause pain.  I have no idea why, but according to my husband, it doesn't hurt for him to have a BM.  It has been so long, I don't even know what is normal and what isn't.

My disability claim has been sent to long term disability now.  Tomorrow I have a phone interview with them. My husband doesn't understand why I don't apply for Social Security benefits, but I guess I'm in denial about how sick I am.  According to someone who works at my company, my team thinks I'm not coming back.  I haven't said that, though.  Again, denial is strong.

Bloody Nose

The heat has been on pretty consistently over the past week as it is now mid-November and temperatures are not getting above 60 any more and lows are at or near freezing.  So the air is now bone dry.  I have had this cold since last Wednesday, and it is not getting any better.  Sunday night I got my first bloody nose of the season.  And then Monday I got two more.  And today another one.  I am going to see if I can get in to my primary care provider to get the vessel cauterized because there must be one bad one in there that keeps popping whenever I sneeze or cough hard.  However, I am also coughing up blood in mucus and swallowing blood, which has such a disgusting taste.

I had signed up to drive for a field trip with my son's class to a food shelf, and as I felt ok this morning (the cough always gets worse as the day goes on) so I went.  The kids were fun to listen to in the car, and I love eavesdropping on their conversations when they forget that I am there.  They watched a movie on sharks which was nice as it was about a 20 minute drive.  It was interesting to see what the food shelf actually looks like, and the kids enjoyed stocking the shelves with all the food we brought.

Yesterday, I slept until noon.  It has been a long time since I did that, but I think the cold is messing with me.  My husband hates when I snore as he wears a C-PAP to keep him from snoring at my demand.  And I've been waking up coughing, which also wakes him up.  So I've been sleeping on the couch at night, which hasn't been too bad, since I can sleep in the bed during the day.  I also napped today from 2 until 8:30.  I really don't want to be sleeping all day and up most of the night, but instead I'm just sleeping most of the day and most of the night.  I wish I had energy.  Between the cold and the Crohn's, I am 100% zapped.  I am so glad we are not hosting Thanskgiving this year.  It was our turn, but I've hosted in the past with an uncontrolled flare and swore I'd never do it again.  So my mother reserved the party room at her building and we're having Thanksgiving there.  I hope it is fun.  Or at least not miserable.

Lucky

Friday night I was having Crohn's pain and a miserable cold.  I can either take vicodin or cold medicine, but not both because they both contain tylenol.  So I was going back and forth, trying to figure out which was worse and what the side effects would be.  Since I also had a headache from the cold, I decided to take a vicodin and a benadryl before bed.  I figured the vicodin would help with the Crohn's pain and the benadryl would help with the cold symptoms.  And combined, they would allow me to sleep.  I did get a good night sleep.

Yesterday, I wasn't feeling all that wonderful, but I realized around 1:00 that I hadn't had a BM yet, which is very unusual for me.  It must have been the vicodin, but around 5:00 I had a painful BM that was difficult to get out.  It must have been the vicodin that did that.  However, ever since, I've had the runs.  And a few almost accidents.  Yippy Skippy! (please note extreme sarcasm)

Originally we were supposed to get a snake yesterday, but when I got ready to go to the reptile store, I found out the plan was changed and we were getting a lizard instead.  At first, I was dismayed that I wasn't consulted about this change of plans, but in the end I think the lizard is a better pet for our son.  We got a bearded dragon lizard that my son named Lucky.  He (or maybe she?) is a very active, interested lizard.  She likes to look at us when we're near her tank, and she moves around quite a bit.  I hope she (or he?) adjusts well.  It was a lot of fun feeding the live crickets and watching Lucky eat them.  The cats are enjoying looking at the crickets.

A Cold Makes Everything Worse

It really does.  You're tired?  That is kind of sucky.  However, tired with a cold is miserable.  You're thirsty?  OK.  But thirsty with a cold is awful.  You've got Crohn's pain?  That is bad enough.  But Crohn's pain with a cold is a special kind of suckiness.

My Crohn's pain today is about a 5.  Normally, that would be annoying enough, but livable.  But if you add a cold to that, it gets me downright crabby and bitchy.  I slept on the couch last night because when I have a cold, it irritates my husband because I snore and cough which wakes him up.  Tonight, I'm sleeping in my bed.  I love my bed.  It is my absolutely favorite thing in the whole world.  About 3 years ago, when we had to replace our old bed, we got a king sized Temperpedic memory foam mattress.  It is like sleeping on a cloud.  The foam molds to your body.  I am now spoiled, and whenever I sleep on a spring mattress, I feel like I can feel the springs.  I want to sleep in my bed, especially because I'm sick!

Tomorrow we're getting a corn snake.  I still can't remember how I got talked into this, but I agreed we could get one.  My son is so excited about it.  I'm not as thrilled about having freeze dried mice in my freezer, but it is better than live mice in the house.  I hope I don't regret getting talked into getting the snake.

My Trip to the Mayo Clinic

Yesterday I had my appointment at the Mayo Clinic.  It wasn't as bad as I thought it would be.  In fact, it wasn't bad at all.  The day started off early, and for whatever reason, the alarm didn't go off.  Thankfully, my husband woke up and we rushed to get out of the house.  The drive down was uneventful.  The snow storm shifted and the weather was actually pretty nice.

We got to Rochester, parked and found the right place to check in.  Somehow, some of my information got lost, but I just resupplied it.  They were unable to get my blood pressure reading.  For some reason, it is difficult to get my blood pressure reading from the automated machines.

The doctor was very prompt- we had a very short wait, which is unusual.  She asked a lot of questions, and got my general history.  She also offered me some possible options.  One was Tysabri, a medication that was originally developed for MS.  According to her, the medication works great, however, there are very serious side effects.  If you have a latent virus in your system, it can cause a fatal brain infection.  She said this side effect has a 1 in 1000 risk if you have the virus, odds I am not willing to take.  So before you can take it, you need to check to see if you have the virus.  She also said the virus is present in most people.

She also offered up a way to take 6MP without liver problems.  I am scared of that, because it was awful when I had those problems last time I took 6MP.  She also mentioned clinical trials.  These trials are going on through my GI clinic, so I can participate from home.  However, she wants me to have ANOTHER colonoscopy and upper endoscopy.  Yuck!  Those are now scheduled for November 30.  I am not looking forward to that!  At least I can do them both at the same time.

The appointment was over by 9:00, and the doctor spent close to an hour with me.  After the appointment, my husband and I went out for breakfast at Perkins, since I had been instructed not to eat anything beforehand, in case I needed any tests.  It was a nice chance to hang out together.  I also called my friend, who had our son overnight since we had to leave so early.  She said he had a great time, and that her daughter and my son convinced her to get donuts for breakfast.

We came home and I started getting a sore throat on the way home.  I now have a full fledged cold, with sore throat, stuffy nose and a phlegmy cold.  I guess I was snoring last night, because my husband woke me up a few times.  I often snore when I have a cold.  So I got out of bed around 4 o'clock and tried to sleep on the couch, but that didn't work.  I'm going to try to nap this afternoon before I have to pick up my son at school.

Mayo Clinic Tomorrow

Tomorrow is my appointment at the Mayo Clinic.  We haven't had any snow yet in Minnesota this winter, but Rochester is supposed to get about a half foot of snow overnight tonight.  I really hope they are wrong, because I hate driving someplace unfamiliar when it is snowing.  My appointment is at 7:30AM.  According to my online map, it should take about an hour and a half to get to Rochester, and adding in time for getting lost, we will have to leave the house at 5:30.  Because that is so early, my son is sleeping at a classmate's home tonight.  He's very nervous about it as he's never slept away from either me or my husband.  I am going to miss him terribly tonight.

I hope the appointment tomorrow goes well and doesn't take too long.  I really am not all that thrilled about going in the first place.  I just really hope it isn't a waste of time.

Lazy Sunday

I feel lazy, even though when I have energy, I do stuff.  I just never have any energy, so I rarely do stuff.  Yesterday, my husband took my son to the zoo.  I stayed home because I didn't feel great and I didn't want to have to force them to leave early if (when) I got sick.  So I didn't do much of anything.  I did bake muffins and wash dishes, but really, that wasn't much of anything.

Since we changed the clocks last night, we let our son stay up late last night.  We had a movie night and watched Aladdin.  My son loves the movie, and I actually enjoy it.  I actually enjoy most of the kids movies we have here.  Then after homework, practicing Hebrew and spelling words, he didn't get to bed until after 9:30.  Not a big deal, since the clocks went back an hour while we slept.  My husband and I stayed up and watched SNL.  The skit about the Greek Gods and the Weekend Update explanation of the Euro zone were hilarious.

This morning, I woke up at 7:30 to go to the bathroom, which woke my son up.  He wanted to play Wii, so I set it up for him and got him some breakfast.  I came back up to the bedroom and laid down because I was still tired.  Now my son is at swim lessons and I am home.  I wanted to get some things done around the house, but just washing dishes wiped me out.  I am also having a lot of pain.  I am so f---ing sick of pain!  I wish I had enough energy to live an active life, but that is just not to be.

I also stopped one of my medications.  My doctor had prescribed me dicyclomine to help alleviate my pain.  It is actually for IBS, but it can control spasms of the intestines.  It wasn't doing anything for the pain, and it was making me feel odd.  Plus I noticed I was having problems reading, even with my reading glasses, and changes to vision can be a side effect.  I hope that goes away. 

Oh, the Pain

The pain is so intense tonight.  It has been bad off and on all day, but tonight it is miserable!  We went to Shabbat services, and I was in agony for most of it.  I usually feel so uplifted and positive during and after services, but I just felt sick tonight.  We often will be the last people there because my son loves to play with his friends during the oneg and never wants to leave.  Tonight we left after only about a half hour into the oneg.  He was so upset and I felt miserable, but I was (and still am) in major pain.  I just don't get it.  The CT scan shows only mild inflammation, why am I in so much pain????  According to the information I have, my disease isn't currently as bad as it has been in the past, but the pain is so intense and constant.  It seems that I haven't had a day without a period of intense pain since before I can remember.  I think I'd prefer constant D to this constant pain.  But in my experience, constant D is accompanied by pain.

I finally got everything straightened out with the insurance company, and they approved my visit to the Mayo Clinic.  The timing of my appointment isn't ideal, as my husband is an election judge the day before, so he has a long day of work, my son doesn't really want to sleep over at a classmate's house and we have to be back to the twin cities no later than 5:45 to get him from aftercare.  I'll have to figure it out and just have faith that everything will work out.  I can't drive myself, because the pain is so intense when it comes it is unsafe to drive that much.  I am ruled by pain now.

I have 2 kinds of pain meds available to me right now.  Tramadol and Vicodin.  The Tramadol doesn't do much for the pain, but it doesn't affect my bowels.  The Vicodin actually helps pretty good with the pain (but I hate how loopy it makes me) but it slows my bowels down so much that the next day the pain might actually be worse.  Right now, I'm not taking either, because I don't want the bowel complications but I also find that the Tramadol doesn't help anyway, so why take it?

I wish I could wave a magic wand and just feel better already.  I have lost faith that I'll ever feel ok for any amount of time again.

Food is so Overrated!

I have decided that if I need to get anything done anymore I can't eat beforehand.  Eating causes pain, and pain is bad.  So if I want to drive anywhere, I can't eat.  This morning I drove my son to school, so I didn't eat anything beforehand.  He hates when a parent goes in with him, and if I can, I just drop him off at the front door, but I had to use the bathroom, so I parked and went in with him.  Not that he spent more than a second to say "bye mom!" before running off with his friends.  After dropping him off at school, I went to Target to go grocery shopping.  I had to stop at the bathroom there, too.  There were several people in the bathroom when I got there.  Fortunately the hand dryer is very loud, so no one heard my noisy poop.  The smell I can't do anything about, though.

I got home, unloaded the groceries, and tried to nap, but was unsuccessful at it.  Finally, around noon, I got too hungry, and had a vegetarian chicken patty sandwich.  I paid for it, though.  I am having very narrow BMs when they aren't liquid, which usually indicates a stricture, but the CT didn't show one, or if it did, no one told me about it.

My appointment at the Mayo Clinic is for next Wednesday.  So I called my insurance company to try to get an update on whether the referral had been approved, and they said they still didn't have any information from my doctor.  After much stress and several phone calls, I think the insurance company has all the information they need.  Now to hopefully have a decision in less than a week.

Halloween and the aftermath

Every year for Halloween (or at least the last 2 years) we've gone to my sister's home to take our son Trick or Treating with her girls.  My mom is also there to hand out candy while we take the kids out.  Last night my mom brought pizza for dinner.  I ate a little as pizza rarely causes a problem.  Last night was the exception.  I was so sick.  I think I had over a dozen BMs in just the 4 hours we were there.  I was so sick and felt miserable.  It might not have been the pizza, but I didn't eat anything else unusual yesterday.

Today is a different story.  I slept past 9:00AM.  I was supposed to go grocery shopping today, but I just feel too crappy to do that.  I didn't want to eat anything because I felt so sick, but finally around 1:00 I had some rice and candy.  I probably shouldn't have had the candy, but all this candy in the house is taunting me.  I promised my son ravioli for dinner tonight, but I don't have any pasta sauce and no onions to make any.  I'll have to figure something out.  At least there is some frozen ravioli in the freezer.  Maybe I'll skip all grocery shopping this week and try to get rid of some of the food in the pantry.  But we'd run out of milk and fruit and vegetables pretty quick.  Oh, well.  I guess I do have to get out of the house at least once this week.

Never Going to Get Better

I feel like I'm never going to get better.  I am sure that is not true, but it is feeling like that.  Yesterday was my sister's annual Halloween party.  I went with my husband and son.  She had a taco bar, and I ate some taco.  I probably shouldn't have done that, but I really wanted to, and at this point, it seems like eating what I want doesn't cause that much more pain than eating what I should eat.  I am going to have pain either way, so I might as well eat what I want (within reason, or course.  I still won't be having a green salad any time soon).

I also don't feel comfortable driving any more.  I am constantly worried that I am going to have one of my super sharp pains and it will distract me, possibly causing an accident.  So my husband drove us to the party yesterday.  If I can't drive, though, how will I get the grocery shopping done?  I simply can't do it with my husband and remain married to him.  What about having any sort of a life?  I guess I just don't need to have one anymore.

Anything I do now makes me super exhausted.  I was so worn out yesterday after the party, even though I barely did anything other than sit down and chat with my family.  A friend came over on Friday morning to visit with me, and that wore me out.  We went to a friend's home for Shabbat dinner, and that wore me out.  I made pancakes for breakfast for the family today and that wore me out.  It seems like the smallest thing wears me out.  I practically need naps daily.

I started a new medicine that should help with the pain.  I really hope so.  Tomorrow night is Halloween and we're going to my sister's house to trick or treat in her neighborhood.  I want to be pain free and be able to go out with my son.  I might end up staying home with my mother who will be handing out candy, though.

My appointment at the Mayo Clinic is November 9.  However, when I called my insurance company on Friday to see the status of my request for this to be covered, they said they didn't receive the necessary information.  I hope they get what they need and approve it before hand.  I still have to gather my medical records from Health Partners, but that shouldn't take too much time.  I am not sure what they can do for me that hasn't been done, but I guess I'll wait and see.

The ER Sucks

I hate going to the ER.  You'd have to be crazy to like it there.  But as someone who has had to go to the ER more times than I can remember, I detest it there.  Absolutely hate it!  I think it is the worst place to go when you are sick.  Yes, they treat you, but unless you are having a heart attack or come in by ambulance, you have to wait.  And you never know how long the wait will be.  It isn't a first come, first serve kind of place.  You don't take a number and wait, like at the bakery.  You are treated by the severity of your condition.  For me, my possible condition is fairly serious, but it isn't life or death.  So I sometimes have to wait.

Yesterday, I had a lot of pain during the day, and didn't have regular BMs, instead I just had one small one that was black, which generally means blood.  So I called my GI to ask what I should do.  He called me around 5:00 as my hands were covered by pizza dough.  He wanted me to go to the ER, and warned me that I might end up being admitted.  So I called my mom and asked her to come stay with my son so my husband could take me to the ER.  We arrived at the ER around 6:00.  I was told repeatedly that I would be seen right away.

After an hour, I was told I would be next.  Instead, after an hour and a half, they pulled me to the side of the waiting area to try to start an IV.  The nurse told me he'd been doing it for 27 years when I told him that I am hard to get IVs to start.  Of course, he couldn't get one started.  He called for IV services to come down with an ultrasound.  By the time the IV guy came, they had a room for me.  So we went back to my room, and the IV guy, Jeff, got it started after only 2 tries.  So it took 3 stabs for the IV to get started.  My BP in triage had been high, around 150/100 or so, because I was in excruciating pain.  It remained high while I was there, even though my normal BP is around 117/70.  Then, instead of seeing a doctor, I was seen by a med student.  She was great, but it was odd that I wasn't treated by a doctor.  She ordered some morphine for me, and the wonderful nurse Pat was so kind as to inject the morphine very slowly, so I never got that funky feeling I get when they slam it in.  Blood tests were ordered, and the first phlebotomist couldn't get blood from her first stick, and then she said she'd definitely be able to get blood from the inside of the wrist, which hurts like heck.  But I wanted to get the blood drawn, as I knew it was going to be difficult to get the blood drawn.  As usual, it didn't work, and my left wrist was in a lot of pain.

While waiting for the next phlebotomist to come, I had a CT scan.  I have to be at some sort of cancer risk from all the CT scans I've had done.  But they offered to do an X-ray instead, but past experience is that they do the X-ray, and it is inconclusive so then the do the CT.  So I just went right for the CT.

After that, my husband & I watched most of Secrets of the Dead.  It was an episode I'd seen before, which was good (where they examine the remains found in Mexico of an Aztec massacre).  It took about an hour to get the results of the CT scan, but I still hadn't had blood drawn.  Then, the med student told me the CT scan showed no obstruction or abscess.  Instead, it showed inflammation, but no change from the CT scan I had done in July.  I asked the med student if the inflammation was localized or spread throughout my intestines, and she informed me that the inflammation was widespread all through my large and small intestine.

They finally got my blood drawn, and it was OK.  So they sent me home with an Rx for vicodin and told me to call my doctor.  I was able to sleep until almost 11 this morning, so I didn't have too much of a morphine hangover.

Oh! My! Gawd!

I CANNOT take this pain any more.  It woke me up again last night and prevented me from falling back to sleep.  I think I got around 3 and a half hours last night.  This pain goes from nothing to holy f-ing hell I'm about to die.  I'm a bit worried because I haven't had a BM since yesterday afternoon.  That could mean two things.  I am constipated or I am starting an obstruction.  I have felt the need to go, but each time it was just passing gas.  For a normal person not having a BM for about 24 hours would be no big deal.  For me, it is extremely unusual. I hope it is all some joke my body is playing on me, and that about 10 minutes after I publish this, I'll go to the bathroom and have a huge BM.  That is my hope, but as I've come to realize that nothing seems to go the way I want it to.  I am considering going to the ER if this doesn't stop by tonight.

Please let it all be a false alarm!

I want my life back!

I have been so miserable.  The pain is not going away.  It is both on my left side (not too often, but when it is there, it is sharp) and the usual spot on my right.  The pain has kept me awake and woke me up several times.  I have been so nauseated I feel like I'm having flashbacks to being pregnant, but without the joy of waiting for a baby.  And the D has been miserable.  I barely made it to the bathroom this morning.  I really thought I might have an accident.  Fortunately that didn't happen.

Due to my deteriorating health, and my spirits plummeting, I called the doctor today.  I really wanted something for the nausea.  I thought if I could just stop feeling that, then the other problems wouldn't be so overwhelming.  And this is why I love my doctor:

He called at 5:05, the time of day my house is in chaos.  My son and his friend were playing Mario Bros., my husband was outside taking down the sukkah and I was getting dinner ready and trying (not successfully) to clear off the dining room table so we could sit for dinner (it is always where everyone, myself included, put stuff when we don't want to put it away).  The phone rang, and I figured it was either my doctor's office or a telemarketer.  After a fight over getting someone to answer the phone, I barely got it before it went to voice mail.  It was my doctor.  Not his patient coordinator but the doctor.  He wasn't phased by the noise in the background (or me asking the boys to keep it down).  After apologizing for taking so long to get back to me (I called at 11:00AM), he wanted to know what was going on with me.  I described my symptoms and he suggested either predisone (YUCK!!!!) or budesonide (less yuck), so of course I chose the budesonide.  And then I asked if I could stop taking the methotrexate.  He agreed, but wants me to call him back on Friday to see if that takes care of the nausea.

It was so nice to be able to talk to the doctor and not a coordinator, like my previous GI's office.  Back then, it was impossible to speak to a doctor.  But not just this office, but this particular GI is great about getting back to me.  He called the house the day after my colonoscopy to make sure I was all right and to make sure I was coming in to the office soon to discuss the results.

I really hope this helps, as I have a busy week ahead.  Or at least busy for me now that I'm not working.  Thursday it is the Kindergarten/ buddy family potluck at my son's school.  My husband is the buddy family coordinator and we have to attend, and I really want to anyway.  Then Friday, we are going to Shabbat dinner at the home of one of my son's friends.  It is actually the friend's grandmother's home.  I am looking forward to that.  The grandfather had been my Civil Procedure professor in law school and he just passed away this past May.  Then Saturday is my sister's annual Halloween Party.  I refuse to miss that because I want to see my nieces and nephews in costume and spend some time with my sister.  My son would be crushed if I missed that.

Sunday I only have to manage to get my son to his swim lesson, but my husband will probably do that, because they want to go geocaching afterwards.  And of course Monday night is Halloween, and I want to take my son out trick or treating.

So please let this help!  I want my life back.  Desperately.

Nausea is the worst!

I have been so nauseated for so long.  It just seems like a way of life now.  I can't handle it any more.  I hate it.  And it makes everything else worse.  Yesterday it was practically unbearable.  I had to end a conversation with my husband to run to the bathroom, for a different reason than usual.  Today I have a lot of nausea and a lot of D.  It is like the worst of both worlds.  The only thing that helps the nausea that I can find so far is to drink Pepsi with ice.  The kind of Pepsi that has sugar.  And I can't eat fruit or vegetables.  So by the time I get my Crohn's under control, I'll have gained a hundred pounds.

My son is off school for Shemini Atzeret yesterday and Simchat Torah today.  The public schools are closed for MEA (whatever that is).  So yesterday he went to bug camp at Como Zoo, and today, after OT, my husband and son are going camping.  It is so cold here, with temps what they would normally be in mid-November.  But my son loves it, and my husband likes it, so they'll have a lot of fun, I'm sure.  Yesterday evening, my husband went out with friends for his birthday (it was Tuesday), so when my son got home from camp he had his friend over and they played Mario Bros and I made them pizza.  It was so nice to see them playing together.  It reminded me of when I was a kid.  And reassured me that he is fine making friends.  For the longest time we worried about his social interaction, but now that one kid in particular is not around him any more, he seems to have matured a great deal.

Next week he goes back to a regular schedule.  I'm hoping to start feeling better then.  I don't have any reason for this except some blind optimism.

Meth day

It is Meth day again.  Ugh!  But before I took my meth shot, I helped out at my son's school.  They had breakfast in the sukkah.  But my son had to go to OT before school, and missed the breakfast.  He was devastated that he couldn't eat with his friends, even though I saved him a plate and he got to eat it during math.  It is also my husband's birthday.  He is going out with some friends Thursday evening.  I hope they have fun.

On to the meth.  As soon as I injected myself, I had to fight the nausea.  I nearly threw up several times.  After that, I spent the rest of the afternoon feeling miserable.  And now I have pain in my left side, someplace I don't usually have pain.  I am worried, because the pain is pretty sharp and intense.  I really hope I don't end up in the ER again.

Too Busy

I am going to be so happy when the fall holidays are over.  I've been too busy, and feel horrible.  And my Crohn's has been affected by it, too.  Thursday, my son was home from school, and I had to clean the house and prepare for our Sukkot party.  The party was fun, and it was great to see friends again.  Then Friday, I met a friend with her daughter and a classmate at the children's museum with my son.  After lunch, we went to Candyland.  The smell in there made me really nauseated.  I had to run back to the Children's Museum to go to the bathroom.  Fortunately, I didn't vomit and my friend was able to take care of my son while I was gone.  Then, when we got home, I was really sick.  I ended up not being able to go to services, and my mom was there for dinner, but I couldn't eat.

Then Saturday, my son really wanted me to join him and my husband at the zoo.  I shouldn't have gone, but I did anyway.  I didn't feel all that great there.  I had to make many stops in the bathroom.  Then, when we got home, my husband was busy getting ready for the Temple's Sukkot festival (he operates the apple press there).  Then today, my son and I were home together all morning while my husband worked at the festival.  Then we went to a friend's Sukkot party.

All this activity and irregular schedule has really affected my bowels.  I was finally down to single digit number of BMs per day, and now I'm back in the double digit land.  Plus, the D is very uncomfortable, and I've been having more stabbing pain in addition to the regular pain.  And on top of that, I am out of pain medication.  Friday night I realized that I had one dose left, and I just had to take it.  I hope I can reach my doctor  Monday morning so I can get a refill, not that it does all that much for the pain anyway.

Tomorrow, I am driving my son to school so my husband can sleep in a bit, then I have to call the doctor and hopefully get a refill and then go to Target.  We are out of milk, eggs and pizza fixings (when I don't feel well, that is the easiest meal to make, and the boys really like it).    Then Tuesday at my son's school they are having breakfast in the sukkah, and I volunteered to help.  Wednesday I will refuse to make any plans and am not leaving my bed, especially since my son has Thursday off from school and my husband has to work.

Sukkot starts tomorrow

Or actually, it starts tonight at sundown.  Now most American Jews probably don't celebrate Sukkot.  If my son went to public school, we probably would be unaware of it.  However, he goes to a Jewish school, so we know Sukkot is here because he is off school tomorrow and Friday.  And next week is Shmini Atzeret and Simchat Torah, so he is off next Thursday and Friday.  Then that is the end of the fall holiday cycle.  I will be happy when we get back into a normal routine.  But our sukka is up in the back yard, and we're having people over tomorrow for snacks.  It should be fun.  I look forward to being normal and having conversations with people.

I have been having a lot of pain lately.  Last night I was up with pain.  I have pain now, too.  I've had quite a bit of butt pee today.  My poor bum hurts.  And yesterday was my meth shot day.  My mouth tastes like metal.  It is so disgusting.  Ugh!

I called my GI doctor from when I lived in NY to see if I could get my medical records.  However, they only keep them for 10 years, so no luck there.  I am waiting for the release from HealthPartners to see if I can get my records from them.    I am getting all the stuff ready for my consultation at the Mayo Clinic.

I Shouldn't Have Eaten that Apple

I guess Eve started it.  By eating the first apple.  But my apple misfortune has far less reaching consequences.

We've had beautiful October weather.  Or horrible, it depends on your point of view.  It has been hot, several days reaching the upper 80s.  Yesterday was another of these atypical warm beautiful October days.  My father and step mother were in town, and my sister, brother in law and two nieces were going to the apple orchard with them.  So we decided to join them as my son wanted to see his grandparents one more time before they leave.  The orchard was far away, in Jordan, but it was a pretty drive.  Until my son started complaining he had to go potty NOW!  As a Crohnie, I understood, but there was no where to go for almost 10 minutes.  That was miserable.  But we spotted a golden arches, and crises was averted.

We got to the orchard, but my father and step mom weren't there yet.  So my son played a bit with my older niece (who is 3 years younger than him).  They climbed the hay pile and played a little on the play set.  My sister and I went into the shop and bought some donuts and my niece was so nice and gave hers to my son.  Once my dad and stepmom got there, we got on the tractor ride and went to the orchard.  We started picking, and I found an apple that looked so good.  I just had to eat it.  It tasted great!  I can't remember the last time I ate fresh produce (with the exception of a banana, I'd say early July).  I knew it wasn't good for me (and isn't that odd to think an apple isn't good for me) but I did it anyway.  The rest of the day was a typical orchard visit.  We found a woolly bear caterpillar and it fascinated my son.  He loves wildlife and spent most of the day carrying it around.  It had a very small orange band, which according to old wives tales means we'll have a harsh winter (Yay?).

Today I paid for eating the apple.  Or actually starting last night.  My husband allowed our son to stay up to watch all of Sunday Night Football (Green Bay was playing).  I spent a bit of the evening going to the bathroom.  I was very tired and couldn't wait for the game to be over so I could go to bed.  Finally, when it was done, I laid down, but couldn't fall asleep due to pain.  I finally fell asleep around 3:00.  The alarm goes off at 6:00.  Plus, my husband said I snored a lot (I'm getting a cold).   This morning all my poop was green.  Green poop generally means the food is rushing so fast through the digestive system the bile in the poop doesn't get a chance to get reabsorbed.  It also means more than usual exhaustion.  Which is on top of the exhaustion of not sleeping due to pain and a cold.  I napped for about 2 and a half hours this afternoon, but it wasn't enough.

Yesterday our Sukka also came and was put up.  We're having a "snacks in the sukka" get together.  (and by snacks I mean "Jewish definition of snacks which is actually an entire meal".  So we have to clean the house a bit and I have to figure out the menu.  At least all our friends know I've been sick, so if the house isn't perfect, they'll understand.  I hope.

Never Say Things Are Going Well

Because when you say things are going well, that means they are about to go down the toilet.  At least for me, that is how it goes.  Yesterday I had coffee with a friend.  It was great, and I felt pretty good.  However, it took a 3 hour nap to recover.  But my BMs were normal, and there were only 4 all day.

What a difference a day makes.  This morning I made Challah French Toast for my son for breakfast and drove him to school.  Before I left I had nasty D.  Then after I dropped him off, I had to go to Target to get some things I forgot when I went grocery shopping.  I had to stop at the Target bathroom and had bad abdominal cramps the entire time.  Then I came home, and after putting the groceries away, sat on the couch to watch Doc Martin (I love that show!).  In fifteen minutes time, I had to pause it and run to the bathroom three times.  The last time I left my drink on the table, not thinking about it.  One of the cats, who has a habit of knocking drinks over, did just that.  Ice, drink and straw all over the carpet.  Ugh!  And it seems like it is only going to get worse.  I took pain pills already, and they don't seem to be working yet.

Meth day

Yesterday was a good day.  I hate to say that, because it seems like a jinx, or as my grandmother would say, kinna hurra (Yiddish).  But it was a good day.  Today, not so much.  It is amazing what an injection of a tiny amount of medicine into my abdomen can do.  I have the most disgusting taste in my mouth, I am very nauseous and I feel out of breath.  Plus all over I feel crappy.  All over.  I can't imagine working while on this medicine.

Shana Tova!

We had a nice holiday here.  The family went to the early service, which had special activities for the kids during the sermon, which was probably the only part my son enjoyed.  Then we went to dinner at my mom's house for a nice Rosh Hashonah dinner.  I had such bad diarrhea that evening.  I'm not sure if it was the food or a coincidence, but I was in the bathroom at least 4 or 5 times just while we were there.  I also had bad pain (really bad!) the whole day Thursday.  I took the pain pills, but they didn't really do anything.

Friday I slept for a few hours during the day.  I was so tired (and still am), but with my son home, there was no way I was going to get uninterrupted sleep.  But I was thankful for the few hours I got during the day.  My husband left town yesterday evening.  He should be home Sunday afternoon.  Right now my son is at a birthday party, and I was unable to sleep.  I have a lot of D, and every time I start to doze off, I have to go to the bathroom.  This also kept me awake later than I would normally be up last night.  The constant bathroom runs are annoying!

I got my paperwork yesterday for my consult at the Mayo clinic.  I am not thrilled about seeing yet another doctor, and don't have much hope she can do much more for me than is already being done, but I guess we'll see.

No Schedule

It was hard to take care of my son all by myself last weekend, because I was so tired after everything I did.  I did have help and we made it  through.  Then, on Sunday evening, after my husband came home, my son was outside playing tag with his friends and he twisted his ankle.  He couldn't walk on it and was complaining it hurt.  When he woke up still complaining about it, we took him to the doctor.  The doctor thought he saw a small fracture, and sent the x-ray off to Children's for one of their radiologists to read.  So he stayed home and had to stay on the couch, something he doesn't do well.  So much for sleeping for me.  We spent the day together, and I listened to him complain about being bored all day.

Then, around 3, the doctor called and told me that the radiologist didn't see a break!  So it was just a sprain.  He told me that my son could put weight on the ankle starting tomorrow, he has to wear the brace for at least a week at all times except when sleeping and bathing.  He still has to take it easy, but he's not good at that.

Yesterday, my son went to school.  I had a follow up appointment with my doctor.  It went as I expected.  He can't really offer me anything else, so I have to go to the Mayo Clinic for a visit.  I really don't want to go to some big, impersonal medical practice for a consult, but there isn't much else I can do.  When I got home from the doctor, I napped for several hours.  I was still exhausted, though.  I slept almost 12 hours last night, and I feel like I could take a nap right now, but I want to stay up for a bit.

My son is off school for the rest of the week for Rosh Hashonah.  Today, my husband is going to work for a few hours then take the rest of the day off to spend the day with him.  Tomorrow, I'll take my son to services, then we're going to my mom's for dinner.  At some point, I have to go to the grocery store, too.  I hate being busy because the smallest thing makes me exhausted.

Scared

Yesterday I spent a good chunk of the afternoon sleeping.  We have a visitor in bed during the night, as our son had bad dreams.  When he's in the bed, I don't sleep so well, as he likes to cuddle against me, and I like to sleep with no one touching me.  But I just slept away the afternoon.  So productive- NOT!

Today, I have had quite a bit of D.  Not too bad pain-wise, but a lot of D, which is always uncomfortable.  My husband left for an out of town guys weekend, which I think is a good thing for him.  He really needs some time to himself, he had done so much for me and the house while I've been sick.  But I'm scared to take care of my son all by myself.  I've arranged help, which in itself was difficult.  It was hard to ask for help.  But I'm glad I have it lined up.

I went to Kabbalat Shabbat services at my son's school.  It was nice to be there, but I had to leave to go to the bathroom in the middle.  Luckily, I was sitting by the door.  Then I had to go again while my son was playing on the playground after school.

I hope I do OK this weekend.

The Day After

In many ways, the day after the meth shot is worse than the actual day of the shot.  This morning, my son woke me up at 5:00 and wouldn't let me go back to bed.  He said that he wanted to play with me before he had to go to OT, and that I'm "better than Daddy".  Since I haven't spent as much time as normal with him, I felt I couldn't refuse.  We spent some time playing with his stuffed animals and talking.  It was actually kind of nice.  But once they left, I couldn't fall back to sleep.  I tried, but I just couldn't.

My husband came home after he dropped our son off at school to take me to Costco.  I can't do the Costco run on my own, it is too tiring and the stuff is too heavy.  As we got home, I had to make a run to the toilet, and was almost unable to make it.  Fortunately, I did.

The D has been bad today.  In addition, the nasty taste is still in my mouth.  I have abdominal pain.  And I'm dealing with nausea.  And a headache.  The pain pills don't seem to be helping, either.  I will try to nap again, but with the pain it doesn't seem likely.

I Hate Meth!

I'm not talking about speed, although I hate that too.  I am talking about the methotrexate I take weekly to help my Crohn's disease.  Tuesday is my meth day.  I hate it with a disgust that is not measurable.  If I wasn't seeing some measure of improvement, I wouldn't be on it any more.

But first, before my meth shot today I went with my son's class to the Dodge Nature Center.  I purposely postponed my shot so I could drive for the field trip.  I have not been active at all with my son's school which is unusual for me.  So it was a great joy for me to participate in this 2 hour field trip.  My son was extremely happy I came, and I got to spend some time with him.  There is another field trip coming up and I'd love to participate, but I don't think I'll be able to.  It is at the end of the day next Tuesday, and I don't think I can postpone my shot that long.  Plus I have a doctor's appointment in the morning, and I was able to do this field trip by sleeping late and resting up for the trip so I'd have the energy.  I probably can't do that next week.  My husband will drive if I can't.

When I got home, I took my meth shot.  Blech!  I have to psych myself up to take it.  The pain from the injection is nothing compared to the rest of it.  About 10 seconds after the injection the nasty taste permeates my mouth.  There is no way to get rid of it that I have discovered.  Then about half an hour later the general icky feeling spreads over my body.  And at this point in my day I am exhausted.  My husband generally knows on Meth Day he's either going to make sandwiches for dinner or take him and my son out for dinner.  Because I have no desire to eat and am too tired to do much of anything.

A New Week, but Same Old Problems

Well, it is Monday again.  Yesterday was my birthday, and it went ok.  I spent several hours making a birthday cake and meatballs for meatball subs (and our son, who doesn't eat meat, had a sauce & cheese sub).  My son is the sweetest little boy in the world.  He went with my husband to pick out a beautiful heart pendant for me and a bracelet made of sparkly rocks.

I was in pain and wiped out from all the cooking/baking by the time they got back from camping.  My son & I read Horton Hears a Who together and snuggled in bed to watch Tangled together.  I was doing OK all evening as long as I didn't have to do too much.  I had some bad pain in the mid-afternoon, but it went away by the evening.

Today was another story.  I have had a lot of D and a lot of pain today.  I was so tired, too.  I napped from 1:00 until 3:30.  I am still tired, but will be able to function for the evening.  Tomorrow I am going to chaperone a field trip from 10:00-noon.  It should be all right.  I am not going to take my meth shot until after the field trip.  I just hope I don't have a lot of pain or D at that point.  I am going to make it a point not to eat after 8:00, because that should keep the D at bay.  I might try to eat breakfast earlier, even.

Nausea update

Well, I drank some ice cold Pepsi, as that often helps me with nausea, and it did help.  So I have a toasted English muffin, and I felt ok for several hours.  Now I am feeling queasy again.  I am also having a lot of D.  More than I've had in several days.  No major pain, at least.  I think I might try to sleep, but I am worried about getting my days and nights twisted around, which can happen when I don't have to work.

I'm also getting worried about Tuesday.  I signed up to drive for my son's field trip, since I feel like I am so uninvolved in his school so far this year.  Usually I feel a lot more a part of the school, but since I am almost never there anymore, I am out of it.  The field trip is only 2 hours, 10-12, and I figured I'd take my meth shot after the field trip, so I'd be ok for it.  But if I'm feeling like this without a shot, I am worried I'll be unable to help on Tuesday.  I guess I have to wait until then.

Return of the Nausea

Ugh!  I am so nauseated!  I woke up fine this morning, early.  The cats woke me up around 5:30 with their fighting.  I tried to go back to sleep, but was unable to.  I haven't really eaten this morning, I had some coffee and leftover cake (just a bit).  I felt fine at that time.  Then I had some massive D.  After that I started feeling nauseous.  Nothing helped.  I had another BM (D) and for about 20 seconds I felt better.  I tried to shower thinking that might help, and it did for a few minutes, but now the nausea is back.  It is the worst feeling.  I am not sure what might make it go away.  If necessary, I'll force myself to throw up, because that might help.  But I don't know that it will.  I hate this worse than pain!

Too Much

One good thing happened on Wednesday.  My disability carrier approved the extension of my disability.  That was the only good thing, though.  The D was basically butt pee on Wednesday.  I went to Target, got all my meds, and got groceries.  I was exhausted by the time I got home.  I prepared my meth shot and took it.  Instantly the nasty disgusting taste hit my mouth.  Then, within about a half hour, I started to feel really "wrong".  I can't really describe it, but I just felt ill.  And I was tired.  I finally fell asleep, and was woken up by my husband and son coming home.  I didn't want to eat, as usual.

Thursday was a different story.  It was early release day at my son's school for conferences.  Often on early release days, a bunch of parents take the kids out for lunch.  I went with 4 other parents and our kids.  The kids had a lot of fun with it.  After most of the parents had left, I stayed with a friend and our kids played while we talked.  It was really nice, as I rarely get to interact with my friends any more.  I came home and my son and I played on the computer together until my mom came over.  Then it was back out again for our conference with his teacher.  It went great.  After the conference, my husband & I went to Champps for a drink (I had Pepsi) while we discussed the conference.  We saw some other parents there doing the same thing, so we chatted for a bit.  After that, my husband and I went to Target to get the supplies he needs for their camping trip.  I was beyond exhausted when we got home.  That is just too much for me to do in a day.

This morning I slept until 10:00.  That means I got 12 hours of sleep.  I need to be better about not overdoing it.  I had a really bad episode in the bathroom.  Excruciating pain, nasty D, and nausea.  I ended up taking a pain pill.  Now I actually feel good, but tired.  I did try to clean the bathroom, and I just couldn't do it.  Just standing up that long was making me really tired.  I gave up.

I also have sores on my gums now.  It is a side effect of the meth shot.  They hurt!  A lot!

Drug Shortages and other crap

Yesterday wasn't too horrible.  Just the regular stuff.  I did have a moment of "did you really just say that to me????"  My husband came home from work for a bit and I told him I was about to nap.  His reply was "it must be nice to be able to nap during the day"  Really?  Usually I just blow this sort of comment off, because I know he does most of the work around the house since I've been so sick and miserable.  But I snapped and started to cry and told him that I'd do all the house work and he could have the Crohn's disease.  He could have the constant diarrhea, the pain, the inability to focus on stuff, the exhaustion, the injecting medication twice a week, and by then I was in hysterical tears.  He apologized.

Today was the day my disability decided I'd be able to go back to work.  I wish I felt that good.  Instead I spent a great deal of time yesterday and today on the phone with medical records and the pharmacy and my doctor's office.  I got the process underway to extend my disability.  I hope this isn't too difficult.  And last week, I called in a refill for my "meth shot" but it turned out I didn't have any refills left, so they offered to call my doctor's office.  This morning I was supposed to take my shot.  I called Target this morning to see if they had it ready for me, and they said the doctor hadn't returned the call.  So I left a message at the doctor's office to call in the refill.  I also need more pain pills.  Even though these don't always help, maybe they do and I just don't realize it (like if I didn't take them, the pain would be even worse).  I called the pharmacy and they said they didn't have any in stock.  When I was on the phone with the doctor's office later, they said there was a shortage of Methotrexate right now.  I googled it, and yup.  It seems like a lot of sterile injectibles are experiencing shortages now due to the problems of keeping sterile.

Since I didn't go to Target, I called my husband and asked him to take my son out to dinner.  The house is a wreck right now, and there is hardly any food here, either.  I wish I could have a person come and clean for me.

On another note, my son has started asking us to adopt a sibling for him.  He doesn't want us to adopt a baby, but an older kid, around 3 or 4.  He even told me we should contact Ramsey County Social Services, because lots of kids don't have parents, and he feels that he wants a sibling.  When I asked him why, he said he doesn't want to be the only child in the family.  He feels alone sometimes.  It doesn't help that every other kid at school except one has at least one sibling.  It makes me sad, because we tried for a couple of years to have another child, and it didn't work out.  And then when we gave up on it, I got pregnant about 2 and a half years ago, but then had a miscarriage.

Nothing like your own child to give you a bunch of guilt!

September 11

It has been 10 years since then, and I still remember it like yesterday.  Only back then, I was healthy and in remission.  Now I am sick.

Yesterday was a very busy day for me, and I am paying for it now.  My husband went to Wisconsin to visit his mom & older brother, as they would only be an hour away.  So I was home with my son.  I hadn't slept well the night before, since my son was in the bed with me, so I was already tired.  We played some games, then we went to Costco.  I got there, and realized I didn't have my card.  Ugh!  So we come home, and my son really wanted to go to Costco (because he likes the samples) so we went back.  I bought the stuff we needed, and came home.  By then, my husband was home.  I had promised my son I'd take him swimming, but I was not up for it!  So we went to the pool, my husband refusing to swim.  My son saw a former classmate at the pool, and it was great for him to have a playmate.  He was so excited to be able to go in the deep water with his friend, as it was only this summer that he passed the deep water test.  We stayed there for about 40 minutes, but I could barely move by the time we left.

When we got home, I was going to rest, but I smelled the chlorine on me, so I showered.  My husband & I were going on a date to celebrate my birthday early.  My mom came over, and even though I was tired, I went out.  We went to Outback, since I wanted steak.  I ate more food last night than I'd eaten probably in an entire day last week.  I just don't really eat much any more because of the consequences.  Anyway, even before we left the restaurant, it was causing problems.  I had such D there!  Then we went to Barnes & Nobel to browse.  I had more D and was actually in pain for a while.  We bought some books for our son and the first 4 books in the Game of Thrones series.

Today I've had butt pee all day.  I'm also very irritable and I don't know why.  I am exhausted, but have tried to sleep twice, and was unable.  I also have really bad abdominal pain, unrelated to the D.  I took pain pills, but they haven't helped much.

Another Day with Crohn's

Today has been very uncomfortable.  I didn't really get hungry at all today.  I ate, but not much.  I had a lot of D this morning, some with blood and some with blood and mucus.  Oh, the joy!  But after reading through the blog, I think it is better than it was 2 months ago.  I've had more than a little pain today.  I've taken the pain pills twice.  I had zero energy, but forced myself to cook dinner for the family, since last night I couldn't eat, and they had sandwiches.  Then my husband decided at the last minute to go to McDonalds with friends so all that effort was for nothing.  Grrr!

I'm still waiting to see if my disability will be extended.  I hope so, because I can't imagine being able to work.  I still have my cold on top of the D, exhaustion, pain and also have been having some pretty bad heartburn for the past few days.  The heartburn doesn't seem to be affected (or is it effected?) whether I eat or not, so I don't know what it could be.  In the past, bad heartburn was related to being on predisone, when I was pregnant or very rarely if I eat something that doesn't agree with me.  However, I've had this nasty heartburn when I haven't eaten in hours or if I've just eaten less than a half hour ago.  I haven't eaten a big meal in months, since I don't have too much appetite.  I'll have to ask the doctor at my next appointment.

My birthday is a week and a half away.  My mother agreed to babysit this Saturday night so I could go out with my husband.  I am so excited about this, especially since we didn't go out for our anniversary since I was discharged from the hospital the day before our anniversary.  Next year I better be OK for our anniversary, as it is our tenth.

Another Freaking Cold!!!!

Well, even though the doctor told me that adding another immunosuppresant (the Methotrexate) to the one I was already taking (Humira) wouldn't make my immune system noticeably weaker than either on their own, I have my second cold of the summer.  I don't think it is allergies because I have a hacking cough, my eyes don't hurt and my nose is plugged.  Last night, according to my husband I was snoring, which is par for the course when I have a cold, and then had a coughing fit.  So I left the bedroom around 3:00 and never got back to sleep until around 6, got up at 7 to make my son's lunch, then slept for another hour and a half.

My sister came over, since she had an appointment near my house.  She's probably going to have major surgery soon.  We commiserated about our health, and just talked about stuff.  It was nice.

My husband came home from work around 10:30, and we got in a stupid argument.  Really dumb, but he hasn't apologized yet.  He went to sleep in the bedroom, and since I am coughing and would probably snore, I left him alone in there.  I dozed off and on on the couch, but never really got more sleep.

I feel like warmed over crap today.  Between the lack of sleep, the cold and the return of the abdominal pain, I am really hoping to get better soon.  But I don't really have any hopes for it.

Labor Day Weekend

Friday I went to erev Shabbat services because it was my grandfather's yortzeit.  I usually really enjoy services and feel uplifted when I attend, but I felt ill throughout and left immediately after services.  I had to go to the bathroom 3 times during services, which was embarrassing.

Saturday I was very tired, and spent almost the entire day in bed.  I had only about 10 BMs all day, but they were all D.  I didn't leave the house at all.  My husband and son went to a St. Paul Saints game, and had fun, but as usual this summer, I stayed home.  I am not doing anything fun.

Sunday, I was actually feeling ok.  I wasn't great, but ok.  I even baked for the first time in a long time.  I made peanut butter chip brownies.  They must have been good, as my husband and son ate half the pan when they got home.  They went to play mini golf and then went to Como Town and my son rode several rides.  I did sleep until 10:30 in the morning, and then went to bed fairly early Sunday night.

This morning (Labor Day) I slept until about 8:00.  I've had a little D.  I am very tired, but don't feel like sleeping.  I've had bad heart burn all day, and even after taking some Tums, it hasn't subsided.  I'm making cinnamon swirl bread using the bread machine.  My husband and son went to the Crystal Caves today.  Again, I stayed home.  I wish I could do something fun, but feeling as I do, I don't think I will for some time.  Tomorrow is my "meth shot" and I'm not looking forward to how I'm going to feel after it and for the next few days.

Not too bad

I had a hard time sleeping last night.  I am not sure why.  I did have some pain when I went to bed, but I don't think it was any more than I've been experiencing.  I finally was able to fall asleep around 1:30.  When the alarm went off at 6 this morning, I wasn't eager to get out of bed.  But I did, I had to get my son ready for school.  Then, when he left, I meant to go back to bed, but didn't.  I still can't say what I did, but I think I lay in bed and watched TV.

I had a lot of D this morning, black and tarry, which means blood.  Hip, hip, hooray for me!  (NOT!).  But it calmed down by this afternoon.  I fell asleep watching TV and had some issues while asleep that I won't go into here.  I overslept and woke up late to make dinner for the family.

But all in all, compared to recent days, it hasn't been too bad.  The pain level has been a little lower than recent, and the D calmed down for the afternoon.  I hope this is the start of a new trend, but from past experience, I know not to get my hopes up.

No More!

While on the methotrexate, I have to get regular blood draws.  Normally, this is just an annoyance, but this time, it was way worse.  I went on Monday, and they couldn't get blood, so they told me to come back on Wednesday.  So I went back today, after drinking as much fluid as I could, and it was miserable!  They poked and poked and were only able to get one of the 3 vials they needed.  So they told me at the office they'd contact my doctor and he'd be getting back to me.  This afternoon, his patient coordinator called, and she wanted me to go to the hospital to get the blood drawn.  I almost lost it on her.  I said "No!"  No more needle sticks, no more poking.  I am NOT a human pincushion!  My arms hurt and are bruised.  She called the doctor and called back a bit ago.  The doctor told her I don't have to go back until next month for more blood tests.  Good, because I wasn't going to.

It doesn't matter how much I drink beforehand, because the more I drink, the more D I have.  It feels very pointless to me.  I am not sure what I'm going to do, because the meth should have started working by now, but it hasn't.  I'm still having pain and D.  Maybe a little less than before, but still pain and D.  And, on top of that, I'm exhausted all the time.  ALL.  THE.  TIME.  I am just frustrated.

A Whole New School Year

Yesterday was the first day of the school year for our son.  He started second grade.  He was very nervous about it, and asked that my husband drive and that I sit in the back seat with him on the way to opening services.  I had no problem with it.  We "shot" poison dart frog darts at each other the whole drive, and shot them at daddy, too.  We got there, and he was so normal with his friends.  The opening service was beautiful, as usual, and it was nice to see some of the other moms who I count among my friends.  However, by the time we left, I was dead beat tired.

My husband drove me home, and I tried to nap for a bit.  I couldn't take a pain pill because I had to drive to the doctor's office yesterday afternoon for a blood draw.  I was unable to sleep, but I did rest for a few hours.  The phlebotomists were unable to get the blood after 3 sticks, so I have to go back Wednesday morning.  I could have skipped the whole thing and just taken the pain meds.  Bummer.

Last night was a paddleboat cruise on the Mississippi river for volunteers of the Neighborhood House, and we were invited to go on it.  At first, I thought I'd stay home, as I was so tired and not feeling great with intermittent pain in my abdomen.  However, at the last minute, I decided to go, and I'm glad I did.  I basically sat on the upper deck the entire time and watched the river go by.  The weather was perfect, and I am glad it was one less thing that I had to miss because I'm sick this summer.

Today, after the activity of yesterday (which wouldn't feel like that much if I was healthy) I slept most of the day.  George, the cat, helped, by demonstrating good napping technique.  Then when I woke up around 4:00, I realized I had to take my "meth shot".  I did that, and now I feel even more crappy.

On the bowel front (or back), I'm having constipated diarrhea, which is what I call it when it is hard to go, but when I finally do, it is all D.  I had at least 8 BMs today, so not too bad.  However, I'm not eating anywhere what I normally would.  I just have no appetite anymore.

I hope the lab techs can get the blood they need tomorrow.

Last Day of Summer Vacation

We were awoken today to the words of a not very happy child saying "it's the last day of summer vacation, lets go play!"  Poor kid.  He starts school tomorrow, and I'm sure it will be a great year for him, but I understand why he's sad summer vacation is over.

As of yesterday afternoon, I have had pretty much non-stop abdominal pain.  I have done the painkillers non-stop, not that they've helped all that much.  Also, yesterday afternoon, I stopped having bowel movements.  It got me a bit worried, as in the past, pain plus no BM has meant obstruction.  Fortunately, this morning, I had a BM, part formed, part D.  (sorry if this is TMI, but with Crohn's Disease, you get used to analyzing BMs).  But before that happened, I was awoken in the middle of the night to intense pain.  I couldn't fall back to sleep, and it was another 2 hours until I could take another pain pill.  I just had to wait it out.  Eventually, I was able to fall back to sleep.

Today, we went to an "end of summer vacation" barbecue with my sister, brother in law, two nieces, some of my sister's friends who were in town visiting and my mom.  My son, who is 7, played great with his nieces, who are 4 and 2.  He took turns, and played hide and seek with his 4 year old cousin.  He even alerted us when she got sick.  Then he found a boy his age to play with, and they were spinning on the tire swing.

By the time we got home, I was exhausted.  I slept for about 2 hours.  Tomorrow will be a busy day.  First day of school opening schakarit, then I have a blood draw appointment in the afternoon.  If I am up for it, there is a boat ride on the Mississippi to benefit Neighborhood House, but I doubt I will be in the mood for it, or have the stamina for it.

Not So Fast, There, Missy!

Well, I guess I spoke too soon yesterday when I thought maybe I was improving.  This morning, all D, all the time.  And intense pain in my abdomen.  I had to cut short my conversation with my dad because it was so intense.  I wish I knew what is going on.

I wonder if it might be the Humira?  I usually take it every week, but due to a mix up with the specialty pharmacy, I missed my dose last week.  Then, after it was missed, I started to see some improvement, but now that I took it again yesterday, I am in agony.  I doubt that it is, that it is merely a coincidence, but I will grasp at any straws at this point.

I am exhausted today.  I slept over 10 hours last night, but still need a nap.  I will take one in a few minutes, after I finish this post.

I hate Crohn's disease!

Maybe I am Improving?

So for the last few mornings, the first BM of the day is normal.  Completely normal.  I wish it was like that the rest of the day, but maybe it is a start.  After the first one, however, the rest are in the range of explosive diarrhea to butt pee.  But at least that first one is ok.  So maybe it is the start to improving.  I notice that one is always before I eat.  So maybe if I stopped eating altogether, I'd get better faster.  Unfortunately, I like eating.

The exhaustion hasn't improved one bit.  So there is that.  I wish I could get through a day without needing several hours of nap time.  It doesn't matter if I sleep 7 hours at night or 9.  I still need a nap most days.  And even then, I'm still too tired to do much of anything else.  Blah!

My son starts school on Monday.  Last night, my mom came over and babysat for us, and then my husband & I went to Champps for appetizers and some time to talk.  It was the first "date" we've had since some time last year.  I think the last date we had was when we went to the movies to see True Grit and ate dinner out.  That was a while ago.  Anyway, it was so nice to just be with my husband and have some time away from the house for the two of us.  We didn't even go out for our anniversary this year because I had just gotten out of the hospital the day before.  After Champps, we went to "Back to School Night".  It was great to hear about their plans for the school year, and I am so excited for my son.  He's got a great mix, being some classes grades 2,3 and 4, and some classes, K, 1 and 2.  And even having grades 1 & 2 for Hebrew and Torah is a great mix for him.  I think he's going to do just great this year.  We scheduled a conference this afternoon with his homeroom teacher, so we hope to get everyone on board with his new OT plan right off the bat.

I Guess I'm All Better Now, or Maybe Not

Yesterday was my "meth injection", my weekly shot of methotrexate.  I spent the rest of the day dozing and not doing much of anything.  Then this morning, I had a 100% normal BM.  I mean really normal.  The kind of BM I haven't had in years.  As my sister joked, take a picture of it and post it on Facebook it is so normal.  I thought "wow, I guess I'm all better now!  I can go back to work, and I'll be feeling fine in no time.  Everything is great". Silly me.  I went to Target because we were out of milk, bread, juice and a bunch of other things.  As I'm in the store, I start to feel the sharp pains.  I am almost in agony.  Then I realized, I needed to get to a bathroom RIGHT NOW.  Luckily, I know where all the bathrooms are, and I wasn't far from the pharmacy bathroom.  So I run in there, and boom!  Explosive diarrhea  (ED).   Fantasy shattered! But wait.  Maybe that was an anomaly.  So I head home, unpack the groceries, and have to stop midway to run to the bathroom.  Again, ED.  After the groceries are put away, I watch some TV and decide to eat something today.  Boom!  More ED.  After talking to my sister for a bit on the phone, I come up to my room to read, but I don't get far before more ED, and more and more.  I guess I was too optimistic this morning with the one "perfect BM".  Then, I lay in bed to read, because all of the sudden, I am beyond exhausted.  Next thing I know, my son is in the room, telling me all about his trip to the zoo with his dad.  I couldn't even tell if it was the same afternoon or next morning.  I beg my husband for some more rest, and I sleep for about another hour and a half.

I guess I'm not cured.  I can't imagine how I'm going to live like this.  Any suggestions anyone?

Horny Crickets and other Stuff

Last night was miserable!  I was either coughing my lungs up or in the bathroom with major D.  I didn't want to keep my husband up, so I slept in the chair in the cat's room.  I may as well have stayed in bed, because my husband said he could hear me anyway.  Tonight he says he's sleeping on the couch downstairs.

He was at work today and I was home with my son, but I felt so horrible I couldn't do much of anything.  He kept saying he was bored, so finally at one point I suggested he clean his room.  He decided he'd rather be bored.  Eventually, he had a friend over.  They were so loud.  Even after I specifically said I was going to sleep and they had to stay downstairs, they still came up and woke me up.  Of course the coughing woke me up, too.

There is a horny cricket in our basement that is driving me crazy.  The noise they make, I wonder how in the heck they manage to attract a mate, but it must sound nice to female crickets, because otherwise they'd die off.  At least I can't hear it in the bedroom, only in the basement and main level.

Tomorrow my son is in care at the JCC, as my husband has to work all day.  I am considering going to the doctor because I've had this cold forever.  I am also out of pain meds, but I think I need to go to my GI doc for those.  I've had such bad pain yesterday and today.  I feel like I'm never going to get better.

Bored

I am so f-ing tired of being sick!!!!!  Today started out bright and early (5:30) because our son woke up and I had promised my husband he could sleep in.  So I went downstairs and set up Netflix and went back to bed.  Around 6:30, my son asked for breakfast and I told him I'd be right down.  At 7, he wondered where his breakfast was.  I had fallen back asleep  (oops!).  At this point, the Wii had frozen, and I had to fix it, so there was no going back to sleep for me.  After a few episodes of Phinneas & Ferb, we played a game of Sorry!  At this point, my son couldn't wait any more.  He wanted Daddy, and as it was after 9, I told him it was ok to see if he was up, which is code for "go ahead and wake him up".

They ended up going to the waterpark today.  I always take him to the waterpark!  This is the first time he's gone with his father.  But I knew there was no way I'd be able to do it.  Instead, I went to Costco, came home and napped for about an hour, then decided as I hadn't eaten yet today, I probably should have something.  I ate a little, and then decided to wash all the dishes as neither of us did them yesterday, and the sink was full.  Washing the dishes did me in, and I laid in bed for about 2 hours.  I was so tired, but I couldn't sleep any more, so I read a bit.  Then I put clean sheets on my son's bed, and that was it.  I was wiped out.  I still had to make dinner, but that wasn't too hard.  I promised steak to my husband, so I made steak for us and beans for our son.  I also cut up some red potatoes and grilled them in a foil pouch.  They came out great.

Unfortunately, along with being bored and tired all day, I also have had a lot of D.  Nasty D, to be exact.  And my butt hurts.  The bad thing is that I had the D even before I ate anything, and it hasn't gotten any better or worse since I've eaten.  I am out of pain meds, so tomorrow I am going to have to call my doctor and ask for some.  I've been trying to avoid taking it, but yesterday and today have been unbearable.  And my cold still hasn't gotten any better.

Oh, yesterday.  That was another boring day.  I didn't leave the house.  I started off the day by taking pain meds, and every six hours I needed more.  I usually don't feel too bad in the morning, but yesterday was a special treat, I guess.  I can't imagine going back to work unless something changes dramatically.  My husband and son got back from their overnight at the zoo, and I was happy to hear about how much fun they had.  My son read me a great story called A Fish Out of Water and did a homework page that he had to write some sentences about rain.  He complained about it, but then was so happy he could do it.  Then last night, his favorite characters would be on TV.  He absolutely loves Phinneas & Ferb.  We don't have cable, but the movie that had been on the Disney Channel only a couple of weeks ago was the ABC Saturday Night Movie, so we let him stay up and watch it.  He was so excited.

Tomorrow I am home with my son for the morning while my husband goes to work.  I hope I feel ok.  He starts school in one week, which just confirms that I missed his whole summer being sick.

OMG

This stupid cold won't go away!  And to make matters worse, I have a migraine and my monthly "friend" and of course, this makes the D about a thousand times worse.  I can't eat, but I'm hungry.  All I've eaten all day is some toast and a fudgsicle.  My poor throat is on fire, so I might have another fudgsicle, because at least while I'm eating it my throat feels better.

My husband and son came home from camping yesterday, and now they're at the zoo to do an overnight with the dolphins.  I don't enjoy sleeping anywhere but my bed, but I wish I could do some of this fun stuff with them. My husband & I also agreed we won't be going to the state fair.  I think this will only be the second time I am skipping it since I moved here.  At least I have our vacation to look forward to.  I just better feel better by then! I missed almost all the Shabbat services this summer, and I'm feeling leery about attending the high holy day services with all those people in one room right after school starts.  I'll get sick for certain.

I think I'm losing weight from all this D and not eating.  My wedding rings are starting to feel loose.  It is the least that I can get from all this suffering. I really wish I didn't feel like all that I do anymore is complain.  I am becoming the most boring person ever. 

Feeling Weird

I've been feeling so weird lately.  I can't describe the problem exactly, but my whole body feels odd.  Part of it is the cold but also part is definitely related to my methotrexate shot yesterday, or as Cori calls it, my "meth shot".  I have seen meth heads in my neighborhood (sometimes you can be thankful for foreclosures!) and I am as far from that as possible, but I like the name.  I haven't been able to nap today because of how stuffed my nose is, but I have only moved from the couch to the bed to the bathroom all day.  D isn't too bad, but I haven't eaten much, either.  However in the past, I didn't need to eat to have a lot of D.

I haven't left the house for days, unless you count putting the recycling at the curb.  Part of that is because I have my husband's car, which has its quirks making it a pain to drive, but I might go out tomorrow morning.  Of course, the husband and son are supposed to get back tomorrow night, so maybe I'll just wait until Friday.  I am out of chewing gum, and with the icky taste in my mouth all the time, I kind of need it.

I have been experiencing more and more pain in my abdomen, after it being almost non-existent for days.  That is troubling me.  I had to take the pain meds for the first time in at least a week.

I am hoping to recover soon, as I do eventually need to return to work, and I am excited about our vacation this February.  We cancelled our summer vacation, so this is needed.  Fortunately, between our Disney dollars and airline vouchers, it won't be too outrageous.

So Tired

Well, after I slept most of yesterday away, I had a hard time sleeping last night.  Not because I wasn't tired, but because of my cold.  I finally took a cold pill so I could sleep.  I woke up around 8:30 this morning, and all day I've been tired, but haven't really napped.  I have lazed around on the couch and in bed, though.

As far as eating goes, I'm not really in the mood most of the time to eat.  It doesn't really appeal to me.  And anyone who knows me knows this isn't the usual for me.  But I was craving chocolate cake.  So I baked one.  And washed dishes.  It was a big day here.

I got some odd paperwork from the disability people, saying I've requested to extend my disability until the end of September.  That was the original date my doc gave, but for some reason, they initially only approved it until the middle of the month.  I want the medication to have a chance to work before I go back to work.  Today, D wasn't too bad, only 2 full on liquid BMs, and about 5 or 6 other loose ones.  So wonderful to think that is a "good day".  Pain is getting more intense, though.  Sometimes it stops me from doing anything else.  Most of the time, it is more annoying than it had been recently.  Ugh!

Really Home Alone

Well, the boys are gone.  They are camping and I'm here all by myself with the cats.  I hope to do nothing until they get back.  I slept all day.  At one point, I woke up around 2:30 and I was so disoriented, I thought it was the middle of the night.  After a trip to the bathroom, I was asleep again until around 4:30.  So with almost 5 hours sleep during the day, you'd think I wouldn't be too tired.  You'd be wrong, though.  I am going to bed in a little bit.  I hate being this tired all the time.

I've been doing OK, not a ton of pain, but still quite a bit of D.  Yesterday, I barely ate, because I find that eating causes more than a bit of D and pain, and I'm not really hungry any more.  I hope I can at least lose some weight if I'm going to feel this crappy and not eat.  Today, I had a bit of D, but with sleeping all day, and barely eating, it hasn't been too bad.

I made vacation reservations for us for February.  I hope I feel better by then.  We're going to Disney and SeaWorld.  I've made the Disney reservations, but not SeaWorld yet, as I have no idea about that.  I'm still doing the research on it.  I hope everything is available, especially the Discovery Cove dolphin swim, since we'll be at SeaWorld President's Day Weekend.