Irony

Of course, I woke up with a headache on Saturday. I know it was because I bragged about not having had one in so long... or maybe it was because I was up till 2am the night before. I didn't even have a good reason for being up so late. Ross had to do work so he was using the laptop while I watched the Tivo and I didn't really want to go to bed alone. At least it wasn't too bad of a headache. 1000mg of Tylenol and a cup of caffeinated tea seemed to do the trick. Luckily Ross was able to deal with Amelia for an hour or so while I pulled myself together. Otherwise I doubt I would have ever gotten functional.

One of the hardest things about having a baby is that you can't take a break. You don't get a sick day and ironically, I am sick all the time. It doesn't matter how much your feet hurt from arthritis or if you are vomiting or have diarrhea or something else God awful, the baby still needs fed (and changed and burped and entertained and and and and and...) I don't remember anyone talking about that before we had Amelia. Maybe for other parents it isn't quite as big of a problem because they are only sick a few times a year and not constantly.

Oh, and I'm starting up my methotrexate again tonight.

Ups and Downs

Everyone recovered from their colds. I saw Dr. A again a couple of weeks ago and he dropped my prednisone down to 5mg. I didn't really have any side effects from that. He also raised my methotrexate to 17.5, which has made me feel a little worse. It gives me headaches and some more nausea. Dr. L told me to double my folic acid the day I take my methotrexate and the day after. I don't really think that has helped much though.

All in all, I think I am doing really well. Dr. A said I could get out more and didn't have to be so restricted with being in public like I was on the Cytoxan. So a few days ago I decided to take Amelia into the grocery store to pick up some formula. Of course, she spent the entire time running her mouth all over the handle of the cart. I couldn't stop her. I was just thinking, "Well, this is going to make her sick again. We're all going to end up with the flu!" Of course her nose started running yesterday and she is cranky. I am hoping it's just cause she is getting a new tooth (her 6th one!)

Nails Again

I'm down to 10mg of Prednisone. Every week the drop makes me feel a little bad (headache, nausea) for a couple of days, but then I recover.

Although, I have actually been doing a pretty good job not biting my nails, one of them got infected again. My pinky nail broke off and I really don't even remember biting at it, but I must have. In any case, Dr. Awadh had given me refills on my Augmentin prescription and so I got it refilled. I've been taking it for over a week and it makes me feel pretty bad. I've been sick to my stomach and have lost my appetite some. Losing my appetite is a good thing I guess, since I've gained so much weight on the prednisone.

At least Miss Amelia has been sleeping though the night again. :)

Bad Week

My mom's back went out while we were in Boston. The doctor told her that she has degenerative disk disease and some arthritis. Unfortunately, she is almost bedridden and is on Vicodin and Valium to help with the pain. I am having a terrible time taking care of her and the house and her business and Amelia too. Tomorrow I am taking her to a spinal pain clinic. I hope they can help. Ross is terrified that I am going to wear myself out and get really sick. Frankly, I am too. I am so freaking tired.

Everything is so complicated. I am not supposed to be in crowds or around sick people
so when I take my mom to the doctor, I have to bring Amelia and sit in the car while she goes in. I drove around for 2 hours on Thursday waiting for her.

I am also losing some hair. It isn't noticeable on my head, but when I shower quite a bit is falling out. Ugh.

And Ross sold his share in his company on Friday and thought he was going to get a contracting position right away, but the new company didn't have an answer for him. I hope he hears something soon.

I am just so sick of our lives being so chaotic.

Boston

Our trip to Boston went well. Amelia was quite good in the car. She really only cried when she needed fed or changed and once I figured out how to feed her a bottle while she was in the car seat, we made much better time.

It was great to see Ross' parents. His dad was just able to start eating again. He even had a hamburger while we were there. Ironically, I was feeling pretty nauseous and couldn't get my hamburger down.

We were really excited that we got to visit the ocean with Amelia. She squealed (we don't quite think it was in delight) when Ross dipped her feet into it.

Out and About

My mom and I went out to lunch today and then I spent a gift card I had gotten when Amelia was born for The Children's Place. I got 5 long sleeved onsies for her and a jacket to take to Boston. I figure it's going to be colder and I didn't think her summer dresses were going to cut it. We had a great day.

Ross had to work late tonight so I took Amelia over to my dad and Linda by myself tonight. I wanted to get over there and have them see her before we went to Boston so it wouldn't be a month between visits. They are over-the-moon about her. My dad was really proud because he was able to put her to sleep when Linda couldn't.

My dad also said he thought my moon face was looking thinner. I am down to 25mg of Prednisone a day, so that might be true. I hope so, but I think I look pretty fat. Ross calls me 'Prednazilla'. I am worried that about what his family in Boston will think, but being fat is better than being dead. :) I am happy that I haven't been suffering any ill effects from the Prednisone taper yet. People on my WG Yahoo board generally seemed to do well tapering until they got to about 5mg though.

Oh, and I'm doing really well with my nail biting. I painted them last night and they almost look normal again. I think they next time I paint them they will actually be looking good. :)

A Little Break

My mom watched Amelia while Ross and I went to Crown Center on Saturday and then to our brunch at Benton's on Sunday morning as an anniversary present. We had a really nice time, but I didn't feel great last night. I had a headache and was pretty tired, but it was still good to get away. Another problem was that I had forgotten my sinus rinse so I ended up getting really congested. In any case, it was very nice not to be eating with a baby on my lap. :)

Feeling More Functional

My increased sleep seems to really be helping my functionality. I was able to do a ton of stuff today, even after Amelia woke up wicked early this morning. I feel much more mentally alert. I figure I'm getting a lot more REM sleep.

I am really contemplating if I am ready to move back home. Now that most of my WG symptoms have decreased, I am doing most of my own work at my mom's house. I am not really napping during the day anymore. I cook lunch and help with dinner, clean up after everyone a lot and have been doing most of our laundry. I also am helping my mom with her business now some. I feel that if I am well enough to be working with her, maybe I should be at home trying to get our stuff unpacked from our move and settling into our new house. It's hard though because I am worried I will get to feel worse on the Cytoxan. I am usually nauseated a bit in the afternoon, but not so much that I have to lay down. Since today was the first day of my new 200mg dose, I probably need to hold my horses and see how I am affected.

Dreams

I had less nausea today which was good, although I was still pretty tired. I fell asleep rocking Amelia down for her nap. I went to bed really late last night and then didn't sleep well. I have been having bad dreams. They aren't quite nightmares, but are just unpleasent. I dreamed that there was a stain on a dress I couldn't get out and my mom was too busy to help me. I felt really frustrated. They have all been sort of like that. I read that Prednisone could cause bad dreams, so maybe that is it.

Nausea and Exhaustion

I think I am feeling a little more nauseated every day. I woke up this morning and sort of felt sick to my stomach even before I took the Cytoxan. Taking the Compazine with the Cytoxan hasn't really helped compared to taking it after I start feeling sick. I was pretty ill for a couple hours today, but started feeling better after lunch.

Amelia has maybe outgrown her swing which is unfortunate. She keeps trying to rock forward out of it and would have landed on her head if I wasn't there. It is really close to the ground, so her falling out of it isn't quite as scary as it sounds, but I still think that she is probably done with it. I hate to quit using it though because she takes her naps in it. I tried to put her down for a nap in the crib today and she kept startling herself back awake. Finally, I got the idea to swaddle her like we do at night and that helped a lot.

My mom was gone a lot of day and I didn't really get a break taking care of Amelia. Then around 9pm, I really crashed. My back started killing me and I just couldn't hardly keep my eyes open. I laid down on the couch, but didn't sleep for about an hour while my mom held Amelia. I feel better now, but the sudden exhaustion was hard.

MRIs and The Bourne Ultimatum

The MRI itself wasn't bad. I am really able to just close my eyes and think about other things so I don't dwell on being trapped in a little tube. The IV went about like I thought though. The nurse had to stick me in 3 different spot before she got it right. I try to relax and tell them I am fine, but it is so hard to lay there and let somebody root around with a needle under your skin. Ughgh. I am going to see Dr. Awadh tomorrow and will get some results, although I am guessing I won't get details until I talk to Dr. Wong on Wednesday.

Today was really nice. My mom babysat Amelia while Ross and I went to see The Bourne Ultimatum. We figured that Sunday afternoon wouldn't be too busy and it wasn't. The movie was really engrossing and totally distracting. Just what I needed. It was nice not to worry about being sick or Ross' work or Ross' dad or Amelia for 2 hours. What a treat!

Crazily enough, after the movie I ran into Dr. Burrough's. I told him I was doing well and thanked him again for thinking of the WG diagnosis. I actually hugged him. There are lots of people who end up in the ICU with kidney failure before anyone thinks it might be WG, so I am forever greatful that he kept thinking something was odd about my illness.

Swaddling is Critical

Amelia woke up really early this morning. She started crying and when I looked in the crib I could see that she had gotten out of her swaddler. Normally she sleeps about 9-10 hours, but anytime she breaks out of it, she wakes up early. I know I am crazy lucky to have a 4 month old baby that sleeps almost every night for 10 hours in a row. How ironic that I am up every 90 minutes to pee, huh?

In any case, she did go back to sleep after about an hour (as did I) and we both slept in pretty late. I actually wasn't too fatigued today, which was really nice. Only once did I think about laying down for a nap, and of course I couldn't because Amelia was awake and ready to play.

I had some nausea before lunch again today, but it wasn't bad. I didn't take a Compazine. I really think I would end up less sick if I would eat lunch earlier, but I never seem to have time. It's hard to eat until Amelia goes down for a nap and sometimes that isn't until 2pm. Today when I started feeling sick I ate a spoonful of peanut butter and that seemed to help.

I finally got my nails painted tonight after Amelia went to sleep. The first time I quit biting them, having them painted all the time really helped. I am hoping that helps me stop biting them again. Unfortunately, it has been so long since I painted them (since before Amelia was born) that my correction pen dried up. And my nails are so short, I really have paint on alot of the skin. They sort of look like a mess. Maybe I can get a new correction pen tomorrow or the next day. It's much easier not to bite 'pretty nails'.

If the paint doesn't work, I am going to have to try some sort of behavior modification techniques like journaling or something.

Well, it is just about midnight and I am actually tired again so I should get right to bed. If I miss my 'tired' window, I will be up till 2am again.

Nasty Habit

I went to labs today and dropped by Dr. Awadh's office since I knew he had clinic this morning. He looked at my finger and said that if the swelling hadn't gone down by Wednesday I would have to come back. Looking at it tonight though, I actually think it is better. I really don't want them to have to lance it or anything.

Dr. Awadh also was like, "Have you quit biting your nails?" I said, "Now, I have." But I keep finding my fingers in my mouth. I take them out, but it is really hard habit to break. Ross was supposed to bring my fingernail polish tonight so I could paint my nails, but forgot. I don't usually bite them if they are painted, but it is hard to keep them that way. Hopefully I can get them painted tomorrow.

I didn't take a Compazine today. I was driving myself to labs this morning and started feeling sick, but didn't have one with me. The nausea went away after 15 minutes or so. I had a few more waves of it today, but nothing like last Friday.

(Ugh.. just caught myself biting my nails again! stop Stop STOP!! Ughg!!)

My fatigue has been pretty bad today. I was rocking Amelia to sleep tonight and about fell asleep in my mom's rocker (which is not very comfortable). After I put her in her swing to nap, I barely made it into bed before I passed out. I feel like I just suddenly get incoherent from exhaustion sometimes now.

I just read an interesting article about a young woman with WG from Self magazine.

Nausea

Really icky day. I felt so nauseated, I took a Compazine today which ended up making me really drowsy. I spent most of the day in the glider with Amelia on my lap. Today was the first day that I have really felt pretty sick. I am guessing that the Cytoxan is starting to work.

I called Dr. Awadh regarding my fingernail infection. He put me on Augmentin and told me to go to the ER if I got a fever, chills, or my finger started looking worse. I am supposed to call him Monday morning to report on how it looks. So far, it is about the same.

Out and About

Today I drove myself to my labs while my mom babysat Amelia. It was sort of nice to be out alone for once. I have constantly had someone with me since Amelia was born.

It was also the first time I had worn my contacts in a long time. Boy was everything a lot clearer! I like them way better to drive in, but probably won't wear them most days because I want to be able to nap in the afternoon without taking them out.

My sinuses were pretty stuffy again today. At least the Sinus Rinse helps for several hours at a time. I can't believe I didn't know about it when I was pregnant. I was so congested. I really think my ob should have recommended it instead of just saline spray.

Ross is having a pretty hard time. His dad is back in the hospital because he hasn't been able to eat anything. Before my WG diagnosis, we had planned on going up to Boston at the end of August... I guess that less than 2 weeks away now so it doesn't look like we will make it. We were going to take a train, but I don't think public transit is a good idea while I'm on Cytoxan. Maybe we'll go up for Thanksgiving. I am worried about Ed and think we need to make a trip soon though.

Nail Biter

I really have to stop biting my nails! Ughg. I had quit for several years, but then started again when I was sick and pregnant. However since I'm on the Cytoxin and my immune system is being suppressed, it seems like a really bad idea to keep sticking my dirty fingers in my mouth all day. Not to mention that if I bite a hangnail and make it bleed, then I have an open sore on my hand. If I keep my nails painted I won't bite them, but how in the hell do I find time to paint my nails? Right now I spend all day holding Amelia. If she sleeps, I try to sleep. If she is happily playing for a few minutes, I am trying to make up formula for the next day.

Linda and my dad offered to babysit for Amelia once she was on a bottle and I am thinking about taking them up on that offer pretty soon. It would be nice for Ross and I to have an evening alone. I wonder if we could go out to dinner and actually eat in a restaurant. I don't know how much I am supposed to stay out of public.

I don't know how much I should be in public or not because Dr. Awadh is not very clear. He says one thing and then clarifies in a completely different way. At our last visit I said, "Since I am going to be on Cytoxin, should I try to avoid public places?" He said, "Oh no. It's okay for you to go out." Ross asked, "Then she can go to the mall and the movies?" Dr. Awadh replied, "Oh, well... no, no.. She shouldn't go to the mall." Ross then persisted, "Then the movies are okay?" Dr. Awadh said, "No, probably not the movies either." Alrighty then. So??? Where can I go in public if not the mall or movies? I will maybe ask my WG Yahoo group.

As for symptoms, my sinuses were bothering me quite a bit today. I got really stuffy and did my sinus rinse in the middle of the day (and actually did it twice in a row) instead of in the evening like normal.

The ball of my right foot is hurting too. I have had this happen before and I really think it is just from wearing my Dansko shoes for weeks in a row. I have asked Ross to bring my tennis shoes so I can switch it up. Hopefully that will fix things.

Jagged Little Pill

I started taking my Cytoxin today.

I woke up and nursed Amelia for the last time. Ughgh. So sad...

... and then took all my pills. I have to take 3 Cytoxin pills because they are 50mg each and I have to take 150mg each day. I also have to take my morning prednisone, Bactrim, calcium and a vitamin. At night I take a prednisone and a Nexium. I can't believe how many pills I am taking.

I felt a little nauseated before lunch, but the Cytoxin didn't seem to effect me too much immediately. I am really tired right now too, but my sleep is so disrupted that it is hard to say what that is from.

I have almost gotten all of my medical records ordered. I think it's going to run me about $50, but other WG patients suggested that it is a really good idea to keep a personal record of them. Since the WG goes into remission and (hopefully) doesn't flair back up for years at a time, it is hard to remember what happened the last time. It is good to have a record of what led to what and what medication, tests, etc were ordered.

I have been pretty sad and moody today. I read that stopping nursing can bring on a bit of mild depression for a few weeks. It's hard not to get a hit of oxytocin every 3 hours. :) Anyway, as Ross said, "It isn't as though you don't have anything to feel sad about. You mood is in line with your situation right now. I agree. It's been a bummer of a day.

Weaning a Baby

Today went well as far as the WG goes, although I have started weaning Amelia to a bottle and that is awful. I alternated nursing her with giving her a bottle every other feeding. I've been pretty sore and engorged all day. It is just making me miserably sad.

Except for the exhaustion, I felt pretty healthy today. I was really active in the morning, but had to take a nap both in the afternoon and again in the evening because I was so tired.

The Water Deprivation Test

Right now my excessive thirst is making me nuts. This thirst, drink, urinate cycle is causing more trouble than anything. I can't get any sleep and am tired all the time. I thought that the fatigue was the WG, but now that the prednisone has helped all my other symptoms I think the fatigue is from my disrupted sleep patterns. I go to bed around 1am and wake up every 60-90 minutes to drink and pee until about 4:30am when I pump (which I will stop doing shortly). I then go back to sleep from about 5:30am-8:30am, waking up once or twice in that stretch. It is really driving me crazy. Dr. Awadh thinks I may have something called diabetes insipidus (unrelated to the more common diabetes mellitus).

Today was really rough. I had to take a water deprivation test to test for the diabetes insipidus today. I wasn't allowed to drink any water after 3am until my blood was drawn at 9am. This was pure torture since I have a huge thirst problem. I drank a ton of water at 3am, but woke up at 5am and couldn't go back to sleep because I was so thirsty. I kept getting up every 10 minutes to swish water around my mouth and spit it out.

After the test, I saw Dr. Awadh to discuss the results of both it and my lung biopsy. Dr. Awadh said the labs did show I had diabetes insipidus and he has referred me to a nephrologist. He said that the lung biopsy showed necrosis, but no active vascultis. It was negative for infection so he wants to start me on the Cytoxin.

I am planning to start taking the Cytoxin on Thursday morning, which gives me a couple of days to wean Amelia over to a bottle. Sob. :(

Living Arrangements

Today Ross and I went to our house and picked up quite a few things to bring back to my mom's. Since I am about to start Cytoxin, we figured that I would be living with her for at least another few weeks if not quite a bit longer.

If it wasn't for Amelia, I could be home without much of a problem. However I am so tired I get to the point where it is hard to keep functioning without a nap everyday. I am also physically pretty weak and can't carry her for more than a minute or two because my back and chest starts to hurt. Lastly, the amount of time required to care for makes it difficult for me to take care of myself... it's hard to eat something other than a granola bar and a glass of milk when I'm rushing to sit down and feed her. I miss being home, but before I came her I was spending all day trying to get her to sleep and then passing out as soon as she went down. I am worried that the Cytoxin will make me feel worse than I am now... and I will be here another 6 months until they switch me to something milder. We'll just have to wait and see.

I should mention that my sinuses were pretty bad today. I started feeling pretty congested
this evening. I did my NeilMed nasal rinse and that helped alot. My eyes are pretty scratchy, although my arthritis was barely noticeable today though. I was very tired, although I did a lot more today than usual.