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.
Friday, August 10, 2007
Thursday, August 9, 2007
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.
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.
Wednesday, August 8, 2007
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.
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.
Tuesday, August 7, 2007
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. :(
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. :(
Sunday, August 5, 2007
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.
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.
Thursday, August 2, 2007
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.
Wednesday, August 1, 2007
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.
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.
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