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.
Tuesday, August 28, 2007
Sunday, August 26, 2007
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.
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.
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.
Thursday, August 23, 2007
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.
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.
Wednesday, August 22, 2007
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.
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.
Tuesday, August 21, 2007
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.
Monday, August 20, 2007
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.
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.
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