It's been a long time. Like, three months. haha. But life is still not in a good place. Since I've updated my blog, I'm still stuck in the house, unable to work. It's pretty unfun. Luckily, Verizon allows you to suspend your cell service for three months and then another three months immediately following. After that six month period however, you can't suspend it anymore. So I have until about the last week in April before I'll need to continue paying monthly again. That means, I have until then to get felling better and start working again.
As much as most people would love to stay at home and "rest" all day, after almost a full year, you start going a little cookoo. I sort of miss working. More than anything, I miss just going out! I haven't done anything remotely fun in a very long time. I used to even love to just go up to CVS and see what good deals I could find on hair products, skin products, and makeup but I haven't even been able to do that. On the rare days that I feel well by comparison, by the time I get ready (which often includes a shower as I only do that about every five or six days at the moment. I know... "ewww. grooooss" but I have no where to go and no one but my parents and the neighbors that are like family see me.) I'm pretty much spent. Or, I start feeling gross and don't want to chance it. It's so depressing.
The doctor I was seeing, well, that was an experience. I saw him after coming home from Ohio and he scheduled me for a month later. I made my appointment but he had to reschedule. I made an appointment for the following month (now November) but the rheumatologist advised me not to go out until I got my H1N1 shot so I had to cancel. So again, I rescheduled. This time my new appointment was for Christmas Eve at 4:30. That seemed strange to me but I thought "Well, maybe he's Jewish." About a week before my appointment, they called to remind me of my "appointment on December 17th at 4:30." Well that wasn't right. He apparently wasn't going to be in in the afternoon on Christmas Eve. So again, rescheduled. All of that aside, I still don't think he's the right fit for me. Now I'm on the hunt for a new doctor near by that won't talk down to me at the level he does. I get that I look 14 at 21, but dude... come on.
I wish I could just wake up and be better. And I don't necessarily mean be cured, but just have it be so that I don't feel awful and can live a normal, productive life.
Saturday, February 6, 2010
Tuesday, September 15, 2009
It's been a month
I haven't been in to mood to add anything; I haven't felt that great. I'm one of those people that believe if I mention things, it will be 10 times worse... so I'm not really mentioning things now. haha.
The drive home from Ohio was not the most fun I've ever had, but I got home and that's really all that matters. It is amazing how the atmosphere of a home can change how you feel physically but it can and it isn't necessarily for the better here. But you take what you can get.
I saw my doctor last Friday. I told him how I was feeling and everything and now he was very understanding. He put me back on the meds I was originally on and ordered me Marinol, a pill that contains a synthetic form of THC (VA doesn't have medical marijuana laws), to help me with my appetite and nausea. I haven't started taking them yet but hopefully it will help. I am so tired of feeling like this and being only 90 lbs. I don't want to look like a little kid anymore.
Aside from that, not much else is new with my crohn's. I'm just trying to take life one day at a time and not feel like death.
The drive home from Ohio was not the most fun I've ever had, but I got home and that's really all that matters. It is amazing how the atmosphere of a home can change how you feel physically but it can and it isn't necessarily for the better here. But you take what you can get.
I saw my doctor last Friday. I told him how I was feeling and everything and now he was very understanding. He put me back on the meds I was originally on and ordered me Marinol, a pill that contains a synthetic form of THC (VA doesn't have medical marijuana laws), to help me with my appetite and nausea. I haven't started taking them yet but hopefully it will help. I am so tired of feeling like this and being only 90 lbs. I don't want to look like a little kid anymore.
Aside from that, not much else is new with my crohn's. I'm just trying to take life one day at a time and not feel like death.
Wednesday, August 12, 2009
The Great Doc Search (taken from the spring issue of "Crohn's Advocate")
When you're living with Crohn's, one of the most important parts of managing your disease is finding a physician you can count. Here are a few quick tips to keep in mind when you hit the pavement in search for the best of the rest:
TIP 1 ask for recommendations
If you're focusing your search on finding a gastroenterologist, ask your family physician to recommend someone. Also, ask your family and friends in your area if they have a doctor they like. It's best if it's a physician they have worked with and who is familiar with IBD.
TIP2 make sure you plan ahead
Searching for a doctor to treat Crohn's while you're in flare or not feeling well can make you act in a panic. Conducting the search while you're well alleviates unnecessary stress and pressure - two elements that could even end up aggravating your symptoms. And if you're moving to a new location, you should plan ahead and schedule a visit for when you first move.
TIP 3 act like you're a big boss interviewing candidates for a very important position
Conduct interviews with a few doctors as part of the vetting process and don't be shy about the tough questions that are on your mind. In thurn, make sure your doctor is patient and provides helpful suggestions targeted to your needs.
TIP 4 remember that it's all about R-E-S-P-E-C-T
Choosing a doctor is as much about mathcing their expertise to your disease state as it is about finding someone you can trust and can work with. Make sure you feel comfortable with the doctor and that he/she respects you by listening to your concerns and provides you with all the information you need. Remember: this is a partnership in the truest sense of the word and you need to feel at ease.
TIP 5 keep in ming that you have a role to play, too
It is important to track your symptoms and log them in a journal so you can clearly communicate your disease state to your medical team. The more you help them, the more they can help you.
TIP 1 ask for recommendations
If you're focusing your search on finding a gastroenterologist, ask your family physician to recommend someone. Also, ask your family and friends in your area if they have a doctor they like. It's best if it's a physician they have worked with and who is familiar with IBD.
TIP2 make sure you plan ahead
Searching for a doctor to treat Crohn's while you're in flare or not feeling well can make you act in a panic. Conducting the search while you're well alleviates unnecessary stress and pressure - two elements that could even end up aggravating your symptoms. And if you're moving to a new location, you should plan ahead and schedule a visit for when you first move.
TIP 3 act like you're a big boss interviewing candidates for a very important position
Conduct interviews with a few doctors as part of the vetting process and don't be shy about the tough questions that are on your mind. In thurn, make sure your doctor is patient and provides helpful suggestions targeted to your needs.
TIP 4 remember that it's all about R-E-S-P-E-C-T
Choosing a doctor is as much about mathcing their expertise to your disease state as it is about finding someone you can trust and can work with. Make sure you feel comfortable with the doctor and that he/she respects you by listening to your concerns and provides you with all the information you need. Remember: this is a partnership in the truest sense of the word and you need to feel at ease.
TIP 5 keep in ming that you have a role to play, too
It is important to track your symptoms and log them in a journal so you can clearly communicate your disease state to your medical team. The more you help them, the more they can help you.
Meds
Well, I completely quit taking my humira. I just could't wrap my head around the idea that a medicine that was making me sooo sick and was likely to cause cancer was "good for me." That just seems crazy. So, I went back to my old standby; 9mg of entocort and 6 Asacol per day (with out my doctors concent, of course) and started thinking going back on those was a bad idea. I felt extra nauseous and extra tired so it makes me feel less like eating which is not good for the less than 90 pounds of a person that I am. I also saw online that if you get a sore throat with the Asacol to call your doctor imediately... needless to say, I quit taking those meds as well.
I'm a member of the CCFA comunity and saw how there are all these other medications (plus some that I've read about elsewhere) that the doctor could have given me first. There was one person who stated that once they were diagnosed, the doctor put them straight on humira; didn't try anything first. That got me awondering... maybe doctors treat patients as guinea pigs, maybe they really are in cahoots with the drug companies and get a kick back who knows!
But why not just try something "safer" first. It's not the money for me. I'm not worried about being able to pay or what the medications cost b/c I'm still on my parents insurance (which is an excellent insurance by the way) and our drug plan makes generic's $5/ rx and I name brand/ non generic what ever $20/rx where the humira is only $5 b/c of some special? (the word will come to me later) through the manufacturer.
I just want something that isn't likely to kill me and will make me actually feel better... not worse!
I'm a member of the CCFA comunity and saw how there are all these other medications (plus some that I've read about elsewhere) that the doctor could have given me first. There was one person who stated that once they were diagnosed, the doctor put them straight on humira; didn't try anything first. That got me awondering... maybe doctors treat patients as guinea pigs, maybe they really are in cahoots with the drug companies and get a kick back who knows!
But why not just try something "safer" first. It's not the money for me. I'm not worried about being able to pay or what the medications cost b/c I'm still on my parents insurance (which is an excellent insurance by the way) and our drug plan makes generic's $5/ rx and I name brand/ non generic what ever $20/rx where the humira is only $5 b/c of some special? (the word will come to me later) through the manufacturer.
I just want something that isn't likely to kill me and will make me actually feel better... not worse!
Tuesday, August 4, 2009
now that we're up to date,
being stuck in Ohio sucks. I came up here the last week in June thinking it would be easier for me to go out and do things with everything being close. Well, that is not the case. I've gone out 3 times in the past 5 weeks. That's not so great. And it's been much worse since starting the Humira (an injection for the Crohn's) and lately, have been sleeping until three in teh afternoon. Today, however, I woke up at 5. Yes, 5 pm. So here I sit at 11:30 pm having only been up for 6.5 hrs and feel exhausted and weak, and have my insides feeling like an earthquake (tho that has calmed some). It feels like hell on earth more or less.
I am so tired of this. I desperately want to remember what it's like to not feel anything; get up, go out, come home, and just be. I want ONE DAY to not feel sick, tired, pain all of that. Just be. It's too hard to go out if I feel half way ok even. By the time I get my shower, dry my hair (which is pretty long), and get dressed, I'm to worn out to actually do anything. for not leaving the house in 3 weeks, I think the last time I had a shower was Saturday, maybe Friday. Which I know is totally gross, but I get so tired from it and I don't go anywhere, no one comes here either. So I have to ask myself, what's the point? Why get out of bed at 11 am even to just sit here and watch All My Children, One Life to Live, The Doctors, and Fox news channel all day long.
How long is this going to take?
I am so tired of this. I desperately want to remember what it's like to not feel anything; get up, go out, come home, and just be. I want ONE DAY to not feel sick, tired, pain all of that. Just be. It's too hard to go out if I feel half way ok even. By the time I get my shower, dry my hair (which is pretty long), and get dressed, I'm to worn out to actually do anything. for not leaving the house in 3 weeks, I think the last time I had a shower was Saturday, maybe Friday. Which I know is totally gross, but I get so tired from it and I don't go anywhere, no one comes here either. So I have to ask myself, what's the point? Why get out of bed at 11 am even to just sit here and watch All My Children, One Life to Live, The Doctors, and Fox news channel all day long.
How long is this going to take?
My Story (I'll try to make this brief)
In my freshman year of high school, I started feeling sick. I don't really remember feeling sick sick, but I would wake up in the middle of the night and would be in the bathroom with "the runs". It wasn't every night; just once in a while. So my mom took me to a doctor who ordered endoscopy #1. He percribed me prevacid. By my sophomore year, it was worse.
During my sophomore and junior years, I had seen more doctors and had more tests. I had some doctors that told me it was all in my head, some that told me I had an eating disorder (I have always been thin), some that thought I just wanted attention, didn't want/was affraid of school, and some that even thought my mom was making me sick because she wanted attention.
My senior year I became so sick that by day 30, I missed at least 15 school days of school. That lead to me needing to be home schooled. That fall (the fall of '05) I had been to gasteroenterologist 3 or 4 and he ordered a capsule endoscoy where I swallow a camera pill and it takes picture. that should have been easy enough but when the results came back, he said "I know it says you have Crohn'c, but I don't think that's really what you have." That lead me to set out in search of a new gastroenterologist yet again. Dr. S., who treated me as if I had Crohn's but wouldn't definatively say I had it, gave me one type of Chron's medicationw hich I took for a good few months but only became sicker. He told me he didn't know what else he could do for me and sent me to the Cleveland clinic.
By the time I got to the cleveland clinic, I was 18, already out of high school (and no, I was never able to return to school) and unable to attend college. There, I saw a gastroenterologist and a rheumatologist. The gastroenterologist told me he couldn't see anything and the rheumatologist just told me I had fibromyalgia and that was the cause of my stomach troubles, extreme fatigue, and body aches. So I figure, "Here are these doctors at this world renowned hospital... they must be right" So in November of '06 I went back to N. VA and began seeing a rheumatologist.
This brings me to now. In December of 2008 I was so sick of being sick. I had been complaining to my doctor for a while but he wanted me to go on ritalin to make me wake up more and muscle relaxers so I wouldn't hurt. By February I had to quit my job (I was yet to complete a full year of college) and decided enough was enough. I went and found yet another gastroenterologist who ordered endoscopy #4 and colonoscopy #5 or 6. I had the endoscopy which came back normal (they were testing for ciliacs) but never made it to a colonoscopy. That doctor never would call back, didn't let me know he'd be gone the following week, lost my blood tests... you name it, he did it. So again, I found a new doctor. My mom managed to find the test results from the virtual endoscopy in '05 so i took it in and showed him and he couldn't understand why I had been going through this for so long. He did the colonscopy, printed out a report with pictures, handed it to me and said "You do have Crohn's."
I was finally diagnosed in May of 2009.
During my sophomore and junior years, I had seen more doctors and had more tests. I had some doctors that told me it was all in my head, some that told me I had an eating disorder (I have always been thin), some that thought I just wanted attention, didn't want/was affraid of school, and some that even thought my mom was making me sick because she wanted attention.
My senior year I became so sick that by day 30, I missed at least 15 school days of school. That lead to me needing to be home schooled. That fall (the fall of '05) I had been to gasteroenterologist 3 or 4 and he ordered a capsule endoscoy where I swallow a camera pill and it takes picture. that should have been easy enough but when the results came back, he said "I know it says you have Crohn'c, but I don't think that's really what you have." That lead me to set out in search of a new gastroenterologist yet again. Dr. S., who treated me as if I had Crohn's but wouldn't definatively say I had it, gave me one type of Chron's medicationw hich I took for a good few months but only became sicker. He told me he didn't know what else he could do for me and sent me to the Cleveland clinic.
By the time I got to the cleveland clinic, I was 18, already out of high school (and no, I was never able to return to school) and unable to attend college. There, I saw a gastroenterologist and a rheumatologist. The gastroenterologist told me he couldn't see anything and the rheumatologist just told me I had fibromyalgia and that was the cause of my stomach troubles, extreme fatigue, and body aches. So I figure, "Here are these doctors at this world renowned hospital... they must be right" So in November of '06 I went back to N. VA and began seeing a rheumatologist.
This brings me to now. In December of 2008 I was so sick of being sick. I had been complaining to my doctor for a while but he wanted me to go on ritalin to make me wake up more and muscle relaxers so I wouldn't hurt. By February I had to quit my job (I was yet to complete a full year of college) and decided enough was enough. I went and found yet another gastroenterologist who ordered endoscopy #4 and colonoscopy #5 or 6. I had the endoscopy which came back normal (they were testing for ciliacs) but never made it to a colonoscopy. That doctor never would call back, didn't let me know he'd be gone the following week, lost my blood tests... you name it, he did it. So again, I found a new doctor. My mom managed to find the test results from the virtual endoscopy in '05 so i took it in and showed him and he couldn't understand why I had been going through this for so long. He did the colonscopy, printed out a report with pictures, handed it to me and said "You do have Crohn's."
I was finally diagnosed in May of 2009.
Monday, August 3, 2009
Preface
So, I got the idea from seeing previews for Julie&Julia (which by the way I think looks pretty good) and, while I admit I didn't look, thought there may not be that many people out there that really talk about it openly and freely. I thought that if that is true, I'll start.
Subscribe to:
Posts (Atom)
