I spoke with my doctor last week. My blood test was fine except for slightly elevated liver levels (sorry, I have nothing more specific). He thinks it's probably from the Tylenol I've been taking for headache but my numbers were not high enough to stop the Tylenol.
The doctor agrees that my joints shouldn't be more painful now that I'm (supposedly) in remission. He is sending me to a Rheumatologist who I will see next week. This particular doctor comes highly recommended by my Gastro, online reviews and someone I know who has seen him. As always, I am incredibly grateful to live in New York and have access to some of the best doctors in the world. I have an appointment next week.
Otherwise, I'm still having headaches several times a week although I haven't had a migraine in quite some time (knock knock). My guts are generally quiet during the week as long as I don't eat lunch - which I learned the hard way last week. The weekends are still a bit more tumultuous because I like food, OK?
And so we wait...
Wednesday, February 24, 2010
Sunday, February 14, 2010
Weekend Madness
My weekend pattern continues. I did just fine this week but Saturday and Sunday were a different story. I did have an egg for breakfast each morning this weekend but I don't think I do that every weekend. Or do I? Hmmm... Anyway, as I sit here typing my stomach is churning away. I'm sure I will have to take a break in a minute. Those heavy butterflies are making their way through my abdomen.
I'm thinking it's time to see an allergist in case I'm eating something that's making me sick. I've said it a million times but I need to do it. I will put it on my to do list for Tuesday. I'm sure it will take a few days since I will have to deal with the insurance company first. The insurance company always adds about seven layers of annoyance to any search for medical care. I feel my blood pressure rising just thinking about the initial phone call. Yuck.
This weekend I am also having a lot of arthritis pain. I spent more time on my feet yesterday than I normally do. This morning I walked to the laundromat with a heavy bag on my back and I did a lot of walking this evening. It's pretty cold out there which probably doesn't help. So there are the reasons my joints are bothering me but I have no explanation. Why doesn't the Humira work for both? I have to call my Gastro for blood test results on Tuesday so I guess I will seek his advice then.
On a good note, I am feeling more confident lately and am trying to get out more now that I am feeling better. I've been busier this past week than I have in a while and it feels really good. I am hopeful.
I'm thinking it's time to see an allergist in case I'm eating something that's making me sick. I've said it a million times but I need to do it. I will put it on my to do list for Tuesday. I'm sure it will take a few days since I will have to deal with the insurance company first. The insurance company always adds about seven layers of annoyance to any search for medical care. I feel my blood pressure rising just thinking about the initial phone call. Yuck.
This weekend I am also having a lot of arthritis pain. I spent more time on my feet yesterday than I normally do. This morning I walked to the laundromat with a heavy bag on my back and I did a lot of walking this evening. It's pretty cold out there which probably doesn't help. So there are the reasons my joints are bothering me but I have no explanation. Why doesn't the Humira work for both? I have to call my Gastro for blood test results on Tuesday so I guess I will seek his advice then.
On a good note, I am feeling more confident lately and am trying to get out more now that I am feeling better. I've been busier this past week than I have in a while and it feels really good. I am hopeful.
Tuesday, February 9, 2010
Huh?
I may have mentioned this before but I am so confuuuuuused!
Don't get me wrong, I am grateful for the huge strides I've made since beginning Humira. My condition is 100 times better since I started the treatments in September. I'm just not 100% better and I have so many questions.
At this point I still don't feel comfortable eating lunch at work. I eat a small breakfast and a couple of safe snacks throughout the day. This, thus far, seems to make for a reasonably comfortable commute home in the evening. The problem is that I'm usually starving by the time I get home which causes me to eat more than I need to. This is probably also the reason I haven't lost weight - about which I am torn, but that is an entirely different post.
During the week I do ok. Better than ok. I do pretty well. The only complaint I have is my morning gut. My hour-long train ride is still a test to my sanity on a daily basis. Invariably I wake up nauseous and my stomach is uneasy at least until I am safely seated in my office. Some mornings I have heart burn that will not quit. Over the last three weeks, there were a handful of days where I was running for the bathroom by the time I got to work but I only got off the train once to use a bathroom. I am just never quite sure whether or not I have to get off.
The weekends seem to be worse. I have a milk-heavy cup of coffee in the morning (same as any weekday) and then an actual meal for (I guess you could call it) brunch. This is usually when the diarrhea starts and continues throughout the day. Maybe two meals is too much? I should try to have a very light breakfast as I do during the week and see if that helps but it's hard to resist a lazy, Saturday morning breakfast.
I'm not sure where to go from here. Today I filled out a survey for the Humira case study. I realized this process is probably as helpful for me as it is for those conducting the study - if not more so. Having to quantify the severity of the pain and other symptoms as well as how much those symptoms are affecting my life is helpful in gauging how far I've come and what I need to discuss with my doctor.
I'm having a pretty good week as far as my digestive function goes but I am realizing that my biggest problem is the arthritis in my feet, ankles and knees (also in my hands and elbows but less so). If my arthritis is connected to the inflammation in my intestines, why would I still have arthritis symptoms if I am in remission? Does this mean the arthritis and Crohn's are unrelated?
So many unanswered questions.
I also had one of my quarterly blood tests today so I should hear from the doctor soon. Hopefully he will have answers to my questions. In the meantime I am looking forward to a long weekend of rest (and some fun).
Don't get me wrong, I am grateful for the huge strides I've made since beginning Humira. My condition is 100 times better since I started the treatments in September. I'm just not 100% better and I have so many questions.
At this point I still don't feel comfortable eating lunch at work. I eat a small breakfast and a couple of safe snacks throughout the day. This, thus far, seems to make for a reasonably comfortable commute home in the evening. The problem is that I'm usually starving by the time I get home which causes me to eat more than I need to. This is probably also the reason I haven't lost weight - about which I am torn, but that is an entirely different post.
During the week I do ok. Better than ok. I do pretty well. The only complaint I have is my morning gut. My hour-long train ride is still a test to my sanity on a daily basis. Invariably I wake up nauseous and my stomach is uneasy at least until I am safely seated in my office. Some mornings I have heart burn that will not quit. Over the last three weeks, there were a handful of days where I was running for the bathroom by the time I got to work but I only got off the train once to use a bathroom. I am just never quite sure whether or not I have to get off.
The weekends seem to be worse. I have a milk-heavy cup of coffee in the morning (same as any weekday) and then an actual meal for (I guess you could call it) brunch. This is usually when the diarrhea starts and continues throughout the day. Maybe two meals is too much? I should try to have a very light breakfast as I do during the week and see if that helps but it's hard to resist a lazy, Saturday morning breakfast.
I'm not sure where to go from here. Today I filled out a survey for the Humira case study. I realized this process is probably as helpful for me as it is for those conducting the study - if not more so. Having to quantify the severity of the pain and other symptoms as well as how much those symptoms are affecting my life is helpful in gauging how far I've come and what I need to discuss with my doctor.
I'm having a pretty good week as far as my digestive function goes but I am realizing that my biggest problem is the arthritis in my feet, ankles and knees (also in my hands and elbows but less so). If my arthritis is connected to the inflammation in my intestines, why would I still have arthritis symptoms if I am in remission? Does this mean the arthritis and Crohn's are unrelated?
So many unanswered questions.
I also had one of my quarterly blood tests today so I should hear from the doctor soon. Hopefully he will have answers to my questions. In the meantime I am looking forward to a long weekend of rest (and some fun).
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