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.