Goodbye Cytoxan

I should have thought about my pills a little longer before I took them this morning. It may have been the last time I ever take Cytoxan again.

I saw Dr. Awadh today and am happy to report that he is switching me from the Cytoxan to Methotrexate. My latest lung CT scan showed that both of my lesions had shrunk and I haven't had joint pain or other WG symptoms for months. I knew I was a lot better during this lung CT Scan. The last one was sooo hard for me. I kept coughing during it and could hardly hold my breath for the required 15 second intervals. This time it was a piece of cake.

I am very happy to be getting off the Cytoxan. I think I've been getting pretty fatigued and nauseated from it. I have just been feeling pretty icky the past week, although maybe that is from the augmentin. Luckily I am done with that now too. I am picking up the Methotrexate from Walgreen's tomorrow and will start taking a once weekly dose on Friday.

Ross started up his contracting position and all seems to be going well with his job. It is pretty nice to have things getting back to normal. The only real problem recently has been that either my mom or Jeff has been sick since I moved home. I haven't really been able to see my mom for a long time. She sends me emails all the time about how much she misses seeing Amelia and me.

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. :)

Ick

Having some problems with the prednisone taper maybe. I dropped down to 15mg yesterday and have had a headache and been nauseated and fatigued all day. .. oh and cranky. Hope I feel better tomorrow. :(

Home Sweet Home

Well I finally moved back home today. We had been talking about moving me home really soon because my mom's back is better and my health has been really good. We had planned on getting the house cleaned up a bit first (Ross living like a bacholor had left in an unfit state for my standards). However, my mom started getting a cold so I thought it was prudent to get out of her house immediately. I spent all day packing up and driving home. I am exhausted, but thrilled to be back in my own house. It is going to take me while to get unpacked, and cleaned and organized, but at least I'm own my way to living my own life again.

My visit on Monday with Dr. Awadh went really well. He said that he thinks he will take me off of the Cytoxan next month (and probably switch me to Metholtrexate). My labs all look really good. There is no sign of inflammation despite the fact that I am now down to 17.5mg of Prednisone. I still have a runny nose and some congestion, but he said that he thinks the systemic Wegener's is under control.

I am now going to go lay my head down in my own sweet bed on my own sweet pillow (at least until Amelia wakes up and needs a bottle) and drift into blissful sleep. :)

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. :)

Morning Prednisone

The Prednisone dosage drop and switch to morning only went fine. I was happy that I woke up without any joint pain or other major symptoms today. Supposidly it is much better on my adreanal gland to be taking the Prednisone only in the morning so I am thrilled that I can do that now.

Dr. Awadh Appointment

I saw Dr. Awadh today. My WBC is 6.8, which is still pretty reasonable. He is going to leave the Cytoxan at 200mg daily for another couple of weeks. I am supposed to drop the Prednisone to 30mg daily and switch it all to the morning dose starting tomorrow. I don't know how that is going to go. Last time I switched to taking my Prednisone all in the morning, I felt really awful. He said if I am miserable to do 20mg in the morning and 10 in the evening. We'll see how it goes.

Travel & Home

Ross dad is still doing pretty poorly. He can't keep down anything solid and is having another surgery to open his stomach sphincter on Tuesday. We have decided we are going to try to drive up to Boston to see him the last week in September. It'll be a really long drive. I am guessing it'll take 3 days each way with the baby, but I certainly don't want to fly because of my ears. Anyway, Ross and I like driving together. I am hoping we can do the trip for $600. Our Civic gets about 30mpg, and it is about 1500 miles... so that is 50 gallons of gas at $3/gal. $150 each way. That leaves us $300 for 4 nights of motels, food etc on the way. I think we can definitely do it.

Ross and I talked and talked about if Amelia and I should move back home. Since I am feeling so much better, we really think the biggest obstacle is my frequent doctor and lab appointments. I average about 2 per week and I really don't want to bring Amelia into the hospital with me. It would be a pain to drive from our house to my mom's to drop her off before going.. but I could do it. I am going to find out how late the labs are open at KU, because if I could go in the evening Ross could watch her. The other problem is that I really don't like to go out shopping because of my immune system. Currently, my mom or Jeff has really done almost all the groccery and other shopping for us. Ross would probably have to do that for us, but if I have the meals planned he would really only need to go Sunday afternoon or something. Lastly, I am always worried that as the Cytoxan builds up I will start to feel worse. Anyway, I am pretty sure we won't do anything before we go to Boston, but if I'm feeling okay I think we might try to move me back home right after our trip.

I have been doing a pretty good job of not biting my nails. I have some trouble not picking at hangnails, but I've bee getting better. My nails are getting longer and looking pretty good. Whoo hoo.. something good about WG. I'll have pretty nails! (Well, excpet I am pretty sure I am going to lose the nail off my previously infected finger... but I suppose it'll grow back.)

It's getting better all the time

I've been feeling so much better lately, which seems odd because they upped my Cytoxan dosage at the start of the week. I think I have been helped by the extra sleep, but I am also wondering if cutting the Cytoxan tablets in half last week was a bad idea. Once I started taking 4 whole tablets (instead of 3 1/2), I think my nausea subsided a lot.

My mom has been in Arkansas the past couple of days, and I have been doing fine on my own. In fact, I think I have been getting quite a bit more of my own work done (thank you notes, bills, etc) instead of helping her all day. :)

The endocrinologist office finally called to schedule an appointment for me. They can't get me in until October 29th. Isn't that crazy? I am so happy that Dr. Awadh actually started me on the vasopressin (actually it is desmopressin) before then. I live in such a highly developed country and despite a pretty high deductable, have good health insurance, but I can't see a doctor for 2 months. I can't see how socialized medicine could be much worse.

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.

Sweet Vasopressin

I slept 4 hours in a row last night thanks to my new vasopressin medication. It was bliss. I went to sleep at midnight and couldn't believe it when I didn't wake up till 4am. I looked at the clock and was so happy. I am feeling really perky this morning.

Last week, Dr. Awadh called and said that while they couldn't get me in to see the endocrinologist any time soon, that he had spoken to him and wanted to go ahead and start me on the vasopressin. I take 1mg at morning and night. I think I can tell it is working for about 3-4 hours and then it wears off. It is crazy because for the first time in almost a year, I don't have dry mouth. I didn't even realize how dry my mouth was until it was fixed for a while each day.

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.

Prednisone Taper

I thought I felt a little more cruddy today. My ankle is hurting somewhat and I just felt sort of blah today. I wonder if that is from the reduction in Prednisone starting last night.

I also noticed that I have a sore on my tongue like I had a few months ago before I was diagnosed... another sign that the Cytoxan isn't really working yet.

I'm up way too late and really tired, but trying to get my nails painted. They had gotten really chipped and I start picking at them if they aren't perfect.

Labs, MRIs, Bone Scans, Hand X-Rays

I had a busy day at KU today.

I had to get to the lab really early so my bloodwork would be read by my 9am appointment with Dr. Awadh. I requested, but didn't get my usual phlebotomist. I really disliked the guy, Max, that ended up taking my blood. The woman, Robin, who usually does the draws always uses a butterfly needle which I think works much better for me. When requested that Max use the butterfly needle he said, "Oh you don't need something that complicated for this," and promptly poked me directly with the needle connected to the vacutainer. He then said, "Frankly, I would worry about anyone that needed to use that for such a simple draw." Uh-huh. Max hurt me way more than Robin ever does.

At my appointment with Dr. Awadh, he told me that my WBC is still pretty high so he needs to up my Cytoxan dosage. This week I will be taking 175mg and then next week I start taking 200mg each day. Fun Fun Fun. Dr. Lindsey (the attending) was there and said to start taking the Compazine with the Cytoxan as a preventative to the nausea instead of after the fact. He said it would work better that way, especially as they raise the dose. I think my symptoms have stayed fairly constant since the Prednisone really kicked in... I still have sinus trouble, shortness of breath, hearing loss and ear fullness, etc. I am not thrilled with raising the Cytoxan, but I actually have not felt that my WG has really improved since I started it so I understand the neccessity of changing the dose.

Dr. Awadh also had my Pituitary MRI results back. They showed that my pituitary is enlarged which means I have Central Diabetes Insipidus. That means my kidneys aren't the problem, but that my pituitary probably is. For some reason my pituitary probably isn't releasing enough vasopressin in my body anymore, so my kidneys don't retain as much water as they should. Luckily, they can give me vasopressin as a daily nasal spray. Unluckily, I have to wait to see an endocrinologist before I get the medicine. Dr. Awadh doesn't feel qualified to prescribe it. I am waiting to hear back from the endocrinology department about my appointment date. I hope it is soon. Oh, to be able to sleep more than 90 minutes in a row without getting up to go to the bathroom. :)

I also showed Dr. Awadh a slightly painful lump on my left hand. I think it is part of a vein (and caused by the vasulitis), but he sent me for an x-ray. He also sent me for a bone density scan to see if I need to be prescribed Fosamax. The prednisone effects bone density and leads to ostioperosis, so I may need to be on that. The scan came back normal, but I think he will probably put me on it anyways.

Oh, Dr. Awadh loved my symptom tracker. He was like, "How are you feeling? Any improvement?" And I said, "Here is a list of my symptoms over the past few weeks." He said, "Wow! This is really helpful." I think it is a great idea, because it is too hard to tell if I am improving or getting worse over time. I got sick so slowly that I didn't realize anything was wrong. I guess that I really scared my aunt when she came to visit because I was so sick and didn't know it. Ross didn't even realize it either. I had just gotten a little worse everyday so that it seemed normal.

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.

Long Day

Amelia woke up early again and I didn't nap today because Amelia didn't nap much. I am very tired, which again is good.

I have to go get an MRI of my pituitary tomorrow. I think they'll have to give me an IV, which I hate. I think IVs are one of the worst parts of the hospital. I once had a nurse who used lidocaine first and that went much better.

I was really good about not biting my nails today. Having them painted really helps. My infected finger is still not looking right though. :( I see Dr. Awadh again on Monday though so he can look at it then.

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.

Tired

All I can think about is how tired I am, which I suppose is good. The prednisone isn't giving me insomnia tonight. Goodnight.

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.

My exploding finger

The following is pretty gross. You have been warned.

Tonight I made myself some tea and was squeezing honey into it. I had to squeeze the honey bottle pretty hard and all of the sudden my infected finger 'popped' and sprayed stuff all over the counter. I guess it had gotten so swollen, all the puss finally pushed through a weak spot on my skin. It didn't even come out the nailbed. It actually ripped a hole in my finger. I washed it with soap and water and put some neopsorin on it. I think it looks better than it did before now though. It was awful, but I have to laugh about it because really what else can you do?

I have had to take a Compazine the past three days for nausea.

My lungs have not felt excellent. They have had that 'breathing on a winter's day" feeling the past few days.

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.

The Definition of Unhappiness

I am a little blue tonight... I don't think I have any good reason to be feeling this way. Well, I should say that I don't have any more reason than normal.

I guess I was thinking about Ross and my 6 year anniversary that is coming up pretty soon and how we probably can't go out to brunch at Benton's like we normally do because 1) I need to avoid crowded places and 2) I really shouldn't be eating at a buffet. So that makes me a little sad, but I guess it's bigger than that too. This situation is just not at all where I thought I would be 6 years after getting married. Our lives feel so turned upside down right now... I know things will get sorted out. I know we will be happy and healthy again eventually. But this anniversary is really highlighting the unexpectedness of my illness and its unpleasant repercussions.

I just read a quote that I thought summed up my thoughts for tonight nicely: "The definition of unhappiness is the distance between they way things are, and they way you think they should be." I guess that ties in closely with one of the 4 Noble Truths of Buddhism: Suffering is caused by desire. Maybe I will think about that tonight. It is sometimes hard to accept what you have and not wish for something else though.

Infected Finger Nail

One of my fingernails seems to have gotten infected. I am pretty sure it was from biting my nails. I have to stop that... Anyway, yesterday my right middle finger was a little sore beside the nail. That happens all the time when I bite them. However, this morning when I got up the whole left side of the last joint was red and it just got worse all day. Tonight I called and left a message with Dr. Awadh's nurse about it. I am hoping it is better in the morning. I have this horrible feeling that I'm going to end up having to have it lanced or something. Yikes.

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.

Good Weekend

It was a really nice weekend.

Yesterday morning Ross and I went back to our house and gathered up a few more things to bring to my moms. We also got my car so I will be able to drive myself to my labs. I am hopeful that I will stay feeling good enough to be able to do that. The Cytoxin has made me a bit nauseated everyday around noon, and I would say I have been getting progressively more tired each afternoon. However, I have been doing tons of Amelia's care on my own and have been really active, so some of my fatigue might be from that. Today was actually the first time I have had to nap in about a week.

Last night Robin and Adam came over and we had a fantastic time. They brought pizza. I made bubble tea and we talked for several hours while Jackie and my mom looked after Amelia. As much as I hated to quit breastfeeding, it was pretty nice for someone else to be able to feed her while I talked with my friends.

The prednisone is making my face look awfully round and fat. They call it 'moonfaced'. I am also getting more facial hair. Ick. Well, since dog training is out for a while, maybe I can apply for a 'freak' position at the state fair. I don't think that requires anything more strenuous than smiling politely at people.

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.

Hungry Hungry Hippo

I just finished eating some ice cream and magic shell for a midnight snack.

The prednisone is making me crazy hungry. It is really hard not to have any sense of if I really need to eat or not. I am hungry before I eat, and stay hungry while I'm eating... sometimes I think about what else I can eat while I am in the middle of dinner. After I've eaten, I'm still hungry. Ughghgh.

Breastfeeding burns like 500 calories a day and since I am quitting tomorrow, I am going to have to really start being more restrictive about what I'm putting into my mouth. I almost think it would be worth it to 'pump and dump' just to burn the calories.

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.

Feeling Pretty Good

I am feeling better today. My chest doesn't really hurt in front anymore, although my back is still sore. My nose has been running quite a bit but I am not really congested anymore. I think the sinus rinse I am using is really helping. My arthritis isn't bad today either. Really only my left ankle is the only joint that is really bothering me.

Lung Biopsy

I only got 3 hours of sleep last night. Amelia didn't go down till about 1a,m and then I futzed around and pumped until about 2am. I woke up at 5am to pump again and then had to get ready to go to the hospital. I needed to be there at 7am to have a blood clot test drawn before the biopsy scheduled for 9am. Ugh. Even if I wasn't sick, my lack of sleep would make me feel tired all the time.

I took 40mg of Prednisone last night because I wasn't allowed to take it before the surgery. I woke up feeling much much better than yesterday. I am amazed at the difference.

A minor problem was not being able to drink anything for 4 hours prior to the biopsy. I have a serious case of polydipsia (excessive thirst) and have been drinking about 2 gallons of water a day... maybe more. Many normal people find it difficult to drink the recommended 8 cups and I am easily putting back 32 cups a day. I think the polydipsia is related to the WG because it started about the same time as my ear problem last November. It was awful not to be able to drink for 4 hours prior to the biopsy. They let me 'swish and spit' and I walked around with a water bottle and a spit cup all morning, but it didn't help much.

The biggest problem for the day happened in the pre-op waiting area when the surgeon came in to discuss the procedure with us. I had been leery of having any lung biopsy done, but Dr. Awadh had assured us that the needle biopsy was a minor procedure. However the surgeon said, "You should be aware there is 50% chance your lung will collapse after we do this and you will be in the hospital for a couple of days with a chest tube." WHAT??? 50% chance of lung collapse isn't associated with an 'minor' procedure I have ever heard of.

I feel very mislead by Dr. Awadh. Did he really not know that there was such a high chance of a complication? If we'd known, I think we would have still agreed to do it, but we would have made arrangements in case there was a problem. As it is, we were scrambling to find somebody to take care of Amelia for the day. Me being in the hospital for another 2 days would have wrecked havoc on my mom and Ross' schedule. And yet leaving w/o getting the biopsy seemed impractical. I figured we'd end up having to come back later and that would have caused it's own problems, so we decided to go ahead with it.

In any case, my lungs are both still inflated. I do feel like somebody hit me in the back with a stick though and the 'pleurisy / muscle spasm' pain feels like it could return. I am hoping that goes away, but I have been careful not to lift Amelia or anything all afternoon.

Don't Skip Doses of Prednisone

Today was pretty awful. The prednisone has been causing a bit of insomnia so Dr. Awadh suggested I switch to taking all of my doses in the morning instead of 2x a day. I was really stupid about it and didn't take ANY prednisone last night, thinking I would take all 40mg this morning. Well, of course I woke this morning with pretty bad joint pain again. My wrists were bad, both my ankles and feet. I could hardly lift Amelia. It made me sad because I had been thinking about how good I had been doing and it just brought into focus that all of the progress was from the prednisone. It isn't like I'm in remission.

Meeting Dr. Latinis

I saw Awadh and Dr. Latinis today. They had gotten my labs and Lung CT scan from 2 weeks ago back. My labs indicated that the prednisone had caused a drop in the inflammation etc even after only the 4 days I was on it. My lung CT showed 2 nodules / cavities in my right lung. They had showed my lung CT to a pulmonolgist who recommended I have a CT guided needle lung biopsy. They want the biopsy to be certain that I don’t have some sort of infection in my lung before they put me on immunosupressents and secondarily to confirm the WG diagnosis. They said it is wouldn’t be uncommon for me to have WG and still have some sort of infection or even fungus in the necratized lung cavity. If they start the immunosuppressents when I have an active infection, they could obviously make me very very ill. I am fairly opposed to an open or even VAT lung biopsy, but I comfortable with the needle guided one.

My needle lung biopsy will be on 08/01/07 (Wednesday) and then I will return to get my treatment plan with Dr. Awadh on 08/06/07 (Monday).

Assuming I don’t have an infection in my lung, I will probably start Cytoxan at that time.

Better Symptom Tracker?

I need a better way to track my symptoms than randomly recording what is good or bad each day in this daily journal I think. I would like a template that lists several symptoms like fatigue, weakness, arthritis, congestion, etc and then I rate them on a scale of 1-10… That would make it much easier to see a trend if I was getting better or worse.

My worst pain is in my left pointer fingertip joint.

Prednisone Worries

In general my arthritis is much better although today my left ankle has been bothering me a lot and my left knee a little bit. The fingertip joints on both my pointer fingers are very sore. I keep hurting them when I try to turn on a lamp. I have noticed that my hips ache slightly when I am trying to go to sleep. I am hoping this isn’t the dreaded hip bone Avascular Necrosis being caused by the prednisone.

Speaking of prednisone, I am really hungry a lot of the time. It is really hard not to eat all day long. It is kind of nice to have an appetite and the ability to chew again though (now that the gingivitis is gone). I also think the prednisone is making it hard for me to go to sleep at night (It’s 2:30am now). I am going to ask Dr. Awadh if switching to 1x a day in the morning would be better than taking a dose both at morning and night.

I was pretty tired today. I can barely sit up in the morning I am so tired. I usually feed Amelia, eat breakfast, pump and then have to go back to sleep. Jackie watched Amelia while I napped this morning. I also got really tired this evening and took a nap from around 5pm-7pm while Amelia slept.

My eyes are feeling pretty dry and scratchy. I have a small sore on the right side of my tongue.

My sinuses are much much clearer than they were a couple of weeks ago. My ears don’t hurt and feel clear.

Dr. Staecker Again

Dr. Staecker did not need to scrape my ear b/c the drops had loosed and removed the middle ear effusion. Dr. Staecker wants me to keep him informed about my condition b/c the KU system is slow in sending out follow up reports. He seemed less than thrilled with the idea of putting me on cytoxin. He suggested that there might be other newer and less toxic drugs to try. Dr. Staecker said that he wasn’t a specialist in Wegener’s, but he does have several Wegener’s patients. He urged me to contact him at the first sign of hearing loss b/c that often indicates the start of a flare up.

Meeting Dr. Awadh

The prednisone has helped my arthritis vastly. I am able to move my hands and fingers again. Also, walking is easier although my ankles and feet still hurt somewhat. Stairs are difficult. I am too weak to walk very far with Amelia in my arms.

Saw a rhuematology fellow named Dr. Awadh (and his attending Dr. Lindsey) who asked me about my past history and said he thought I had WG also. Dr. Awadh ordered more blood work to see if the Prednisone had reduced the inflammation, my blood creatine level and other autoimmune labs. He also ordered a CT scan of my chest. He wants me to have either an open or VAT lung biopsy to confirm the WG diagnosis.

Although my urine test doesn’t show an elevated creatine level (meaning I may not have kidney involvement), Dr. Awadh suggested that I be placed on Cytoxin for 3-6 months and then switch to Metheltrexate. I asked if we could delay starting treatment for 2 more weeks so I could b reastfeed Amelia until she is 3 months. Dr. Lindsey said that I had been sick for such a long time that 2 weeks shouldn’t make much of a differnce. I scheduled an appointment for 07/30/07 to discuss test results and start treatment.

The CT scan of my chest was very difficult. I had to hold my breath while the machine was taking pictures which led to coughing fits. One of the techs said, “How long have you had that cough?” I told him I’d had it for about 6 weeks, but had also had it of and on for the past couple of years.

Visit with Dr. Staecker

My arthritis has progressed to the point that walking is difficult. I cannot straighten my elbows or use my hands well anymore. In the morning my mom or Ross has to help move me into position to breastfeed Amelia. I cannot scoot myself back into a sitting position on the bed or really even get her head in position because my hands and wrists are so weak and painful.

Saw Dr. Staecker who confirmed Dr. Burroughs assessment that I had WG. He contacted the KU rhuematology department and got me scheduled for a visit on 7/16/07. He put me on 20 mg of Prednisone 2x daily and Nexium. He also ordered some bloodwork.

Dr. Staecker also tried to scrape the middle ear effusion out of my left ear which caused me so much pain that he had to stop. He prescribed Floxin drops to loosen up the debris and scheduled a follow up visit in 1 week to check on it.