I'm having trouble sleeping tonight. There is a sharp pain in my right knee that's radiating up my leg into my thigh. I wore some new shoes today, those minimal sneakers. (Not the toe shoes! I'll try not to judge you if you wear them.) I walked a lot and carried some heavy things up and down many stairs. I also have pain in my shoulders, though it's the kind that only hurts if I'm using those muscles. This leg pain is there no matter which position I choose. I just took two Tylenol. We'll see what happens.
This pain is familiar. It's been with me intermittently for most of my life. I remember lying in bed and trying to sleep as a small child, but the pain radiating up my leg wouldn't let me. The doctor said it was growing pains. I stopped growing almost 20 years ago.
For breakfast this morning, I had a boiled egg and tortilla with coffee. It wasn't too bad. I only had to go twice before I left. I want to give up the coffee but it's really all I have left. Is it so bad that I have one cup of coffee every morning? I skipped lunch because I didn't want to push my luck. For dinner, I finally cooked the dried black beans I've had in the cupboard for over a year. I think I was testing the waters. I had a small bowl and two ribs that I cooked in with the beans along with some homemade, baked corn tortilla chips. Aside from my normal post-meal bloat, it went pretty well! I guess the Humira is working.
I handed in my final requirements today and received my diploma in return. I officially have a master's degree. I'm a photographer. Officially.
Last night I had crazy, unsettling dreams. Nothing terrifying, just filled with stress and anxiety. I might be trying to avoid a repeat.
The family
that lives above us is running their air conditioner even though there is a nice, cool breeze blowing in over the water. The condensation
is steadily dripping onto our air conditioner below with a loud thwack,
thwack, thwack. I'm never going to sleep.
Showing posts with label Humira. Show all posts
Showing posts with label Humira. Show all posts
Tuesday, August 13, 2013
Sunday, May 8, 2011
Update
I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.
The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.
I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.
I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.
The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.
I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.
I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.
Thursday, August 19, 2010
I feel great! (Well, except for a couple of things.)
Today I had my first blood test in three months. It was just a regular old checkin-up-on-the-Humira test. My nurse told me I have a completely new face which, I think, was a compliment. The 6mp bloat is gone and I have some color. I know I look better. I feel better. My life is better. I just still don't feel great.
My stomach is almost 100% better. I rarely have any trouble digesting anything I eat - even the stuff I shouldn't be eating. I do, however, still have Crohn's belly after every meal. If I swallow anything, no matter how big or small, it results in a food baby. I still have some trouble if I'm in an uncomfortable situation or if I'm nervous - BUT - compared to last year at this time, I'm a new person. So, when I call for my results on Monday, do I complain about this stuff? Should I just shut up? I can eat now! I can leave my house after I eat! I can make it to work without getting off the train and running to find the nearest facilities! Do I have the right to complain about some minor (if embarrassing) discomfort?
Then there's the pain. I do still have some minor pain when I, uh, youknow. But I have other, more disruptive pain. There's a pain at the base of my neck, on my back, where my neck meets my shoulder. It's recurring. It's horrible. It's much worse when I'm stressed out.
And my legs. They still hurt. It's more of a stiffness in the morning. They feel strained when I go up and down stairs. By the end of the day it's a different kind of pain. It's an achy, crampy, swollen type of pain that makes me just want to sit with my feet up or lie down. I've also notice many, many visible blood vessels on my legs which weren't there just a few months ago.
Then there are the headaches. I still have them. Often. And they're sometimes drug-resistant and always incredibly disruptive. And they make me so tired. Do I tell my doctor?
I've told him a million times about the headaches but he seems to think it's from the Humira so it's either headaches or Crohn's.
The body aches? He will send me straight back to the Rheumatologist who will tell me it's either Arthritis or Fibromyalgia and I can go to physical therapy. But I don't want to go to physical therapy. I can't afford physical therapy nor do I have the spare time. I want to know what's wrong with me! I want to know what my options are!
How do I voice this to my doctor in a way that doesn't make me feel like a half-crazy, whiney baby?
Suggestions? Advice?
My stomach is almost 100% better. I rarely have any trouble digesting anything I eat - even the stuff I shouldn't be eating. I do, however, still have Crohn's belly after every meal. If I swallow anything, no matter how big or small, it results in a food baby. I still have some trouble if I'm in an uncomfortable situation or if I'm nervous - BUT - compared to last year at this time, I'm a new person. So, when I call for my results on Monday, do I complain about this stuff? Should I just shut up? I can eat now! I can leave my house after I eat! I can make it to work without getting off the train and running to find the nearest facilities! Do I have the right to complain about some minor (if embarrassing) discomfort?
Then there's the pain. I do still have some minor pain when I, uh, youknow. But I have other, more disruptive pain. There's a pain at the base of my neck, on my back, where my neck meets my shoulder. It's recurring. It's horrible. It's much worse when I'm stressed out.
And my legs. They still hurt. It's more of a stiffness in the morning. They feel strained when I go up and down stairs. By the end of the day it's a different kind of pain. It's an achy, crampy, swollen type of pain that makes me just want to sit with my feet up or lie down. I've also notice many, many visible blood vessels on my legs which weren't there just a few months ago.
Then there are the headaches. I still have them. Often. And they're sometimes drug-resistant and always incredibly disruptive. And they make me so tired. Do I tell my doctor?
I've told him a million times about the headaches but he seems to think it's from the Humira so it's either headaches or Crohn's.
The body aches? He will send me straight back to the Rheumatologist who will tell me it's either Arthritis or Fibromyalgia and I can go to physical therapy. But I don't want to go to physical therapy. I can't afford physical therapy nor do I have the spare time. I want to know what's wrong with me! I want to know what my options are!
How do I voice this to my doctor in a way that doesn't make me feel like a half-crazy, whiney baby?
Suggestions? Advice?
Tuesday, April 13, 2010
Ouch
Last night I felt a little rawness in my throat. I wasn't too worried about it as I've been feeling dehydrated lately and assumed my throat was dry like my hands are when I'm dehydrated. I drank another glass of water then went to bed.
When I woke up this morning it felt like someone was shining a spotlight in my face while choking me and stabbing me in the right side of my head. I think there was a siren and a whistle too.
I stumbled to the bathroom, found some Tylenol Cold and the thermometer and fell back into bed. I didn't have a fever but I wasn't going anywhere. I called in sick, took the medicine and slept for another five hours.
My right eye still feels like it's going to explode but otherwise either the sleep and/or medicine is working. I really hope this is just allergies or something. My next Humira injection is Monday and I'd really like to take it.
I'm going to finish this glass of water then back to bed.
When I woke up this morning it felt like someone was shining a spotlight in my face while choking me and stabbing me in the right side of my head. I think there was a siren and a whistle too.
I stumbled to the bathroom, found some Tylenol Cold and the thermometer and fell back into bed. I didn't have a fever but I wasn't going anywhere. I called in sick, took the medicine and slept for another five hours.
My right eye still feels like it's going to explode but otherwise either the sleep and/or medicine is working. I really hope this is just allergies or something. My next Humira injection is Monday and I'd really like to take it.
I'm going to finish this glass of water then back to bed.
Friday, March 19, 2010
Health Care Reform
I will be honest, I haven't found the time to read the details of the health care reform bill that will likely be passed or shot down by Congress this weekend. I know generally what it's about but I also know there are a lot of rumors flying around the web. I don't know exactly how this bill will affect me but I doubt anyone really knows. I do not know if this bill is the right move or if it's a step back. This is what I know.
I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.
I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.
I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.
This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!
You cannot convince me that we do not need health care reform.
I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.
I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.
I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.
This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!
You cannot convince me that we do not need health care reform.
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).
Wednesday, January 20, 2010
R-E-M-I-S-S-I-O-N
I received official word today that I am in remission! I wasn't expecting this at all. I've been feeling better but not great. I thought they would report that my capsule endoscopy showed improvement but not that it looked good!
Officially, Humira is working for me! My intestines have officially healed themselves! I am officially ecstatic!
I'm not perfect. The Humira is giving me headaches almost daily. My joints are still bothering me a bit and I still have some pain. I may have something else going on or maybe I'm just really out of shape. But, there is light at the end of my tunnel.
This is my first remission so I'm not sure what to expect. I don't know if I will physically ever be back to my old self. Anyone have any advice or insight into what happens next?
Officially, Humira is working for me! My intestines have officially healed themselves! I am officially ecstatic!
I'm not perfect. The Humira is giving me headaches almost daily. My joints are still bothering me a bit and I still have some pain. I may have something else going on or maybe I'm just really out of shape. But, there is light at the end of my tunnel.
This is my first remission so I'm not sure what to expect. I don't know if I will physically ever be back to my old self. Anyone have any advice or insight into what happens next?
Monday, November 30, 2009
I Don't Like Spiders And Snakes...
So I have a few irrational fears. Who doesn't?
I have always been afraid of bugs for no reason (aside from this movie), I get nervous butterflies before I get on a roller coaster (a few summers working in an amusement park will make anyone wary) but the one fear I have that is completely unexplainable is needles. I've never had any sort of bad experience with needles. I was reasonably healthy for the first 24 years of my life and didn't have any more injections than the next person. Yet, for some unknown, ridiculous reason, I am terrified of needles.
Just thinking about a needle is enough to make me nauseous. My diabetic grandmother used to ask us to get her needle from the fridge for her. I would send my little sister. Time for a blood test? If I thought about it too far in advance I would be so nervous by the time I got to the doctor's office I wouldn't be able to sit still.
I never thought I would have to actually pick up a needle and inject myself. It gives me the willies. I try not to think about it until it's time. I try to make sure I'm nice and relaxed but I just can't help it. I had my sixth injection tonight and I'm just not sure I'll ever get used to it.
I have always been afraid of bugs for no reason (aside from this movie), I get nervous butterflies before I get on a roller coaster (a few summers working in an amusement park will make anyone wary) but the one fear I have that is completely unexplainable is needles. I've never had any sort of bad experience with needles. I was reasonably healthy for the first 24 years of my life and didn't have any more injections than the next person. Yet, for some unknown, ridiculous reason, I am terrified of needles.
Just thinking about a needle is enough to make me nauseous. My diabetic grandmother used to ask us to get her needle from the fridge for her. I would send my little sister. Time for a blood test? If I thought about it too far in advance I would be so nervous by the time I got to the doctor's office I wouldn't be able to sit still.
I never thought I would have to actually pick up a needle and inject myself. It gives me the willies. I try not to think about it until it's time. I try to make sure I'm nice and relaxed but I just can't help it. I had my sixth injection tonight and I'm just not sure I'll ever get used to it.
Sunday, November 29, 2009
One More Day
Thanksgiving weekend went pretty well. I narrowly avoided disaster in the middle of a long drive on a highway with very few exits. I had a great time. I ate too much but it was worth it. Nothin' like home cooking.
After a long weekend with the family I realize how lucky I am. No family is perfect and mine is no exception, but I am incredibly blessed to have parents who would do anything for me and siblings who are also great friends.
As far as the Crohn's goes, I'm not doing very well. Tomorrow is Humira day. I think I will give it a few days and see what happens. We had a little slip up on the last injection and I didn't get the entire dose. I'm hoping that's what the problem is and the medicine kicks back in this week. I'm not very good at waiting games.
After a long weekend with the family I realize how lucky I am. No family is perfect and mine is no exception, but I am incredibly blessed to have parents who would do anything for me and siblings who are also great friends.
As far as the Crohn's goes, I'm not doing very well. Tomorrow is Humira day. I think I will give it a few days and see what happens. We had a little slip up on the last injection and I didn't get the entire dose. I'm hoping that's what the problem is and the medicine kicks back in this week. I'm not very good at waiting games.
Wednesday, November 18, 2009
Huge Pain In The A..
Today was incredibly discouraging. I wasn't feeling great when I got up but I left for work anyway. Halfway to the office I started having some pain which could mean disaster or could just be some pain. There's no telling. I was in between train stops when it got really intense. I've been sick every day for a long time now but the pain was always dull and achey (thank goodness) until recently. Today it was burning, stabbing pain that almost brought me to my knees on the train. I spent the next ten minutes trying to stay upright and devise a plan. When the train finally stopped, I got off to seek refuge (a bathroom).
Anyone who has had an attack in an inopportune location knows the minutes until you get to a bathroom are the longest minutes since the beginning of time. Here, in New York, there is an added element of anxiety because there are guards at ever door, locks on every bathroom and rules regarding who can access the key. I quickly found a clean (bonus!) bathroom and snuck into it. I spent eons inside as I still had a 15 minute ride to work from the bathroom and wanted to make sure I would make it alive. Eventually I made it back to the train and then to the office.
I tried not to let my crappy morning ruin the rest of the day but the pain and exhaustion had other plans and the day was pretty much a write-off. The headache came in the afternoon and has yet to leave.
I've noticed an increase in the intensity of my pain since I started Humira. I am wondering if this indicates a narrowing of the intestine somewhere in there but the liquid nature of my -you know- made it easy for it to pass through. Now that the nature of my -you know what- is no longer always liquid, it's causing horrible pain. Anyone?
Anyone who has had an attack in an inopportune location knows the minutes until you get to a bathroom are the longest minutes since the beginning of time. Here, in New York, there is an added element of anxiety because there are guards at ever door, locks on every bathroom and rules regarding who can access the key. I quickly found a clean (bonus!) bathroom and snuck into it. I spent eons inside as I still had a 15 minute ride to work from the bathroom and wanted to make sure I would make it alive. Eventually I made it back to the train and then to the office.
I tried not to let my crappy morning ruin the rest of the day but the pain and exhaustion had other plans and the day was pretty much a write-off. The headache came in the afternoon and has yet to leave.
I've noticed an increase in the intensity of my pain since I started Humira. I am wondering if this indicates a narrowing of the intestine somewhere in there but the liquid nature of my -you know- made it easy for it to pass through. Now that the nature of my -you know what- is no longer always liquid, it's causing horrible pain. Anyone?
Tuesday, November 17, 2009
Headaches
Last night I had my fifth Humira injection. They've been going pretty well so far. I find it fairly easy to inject in my leg and I only had a problem once - I think I moved after the needle went in. It hurt. A lot.
The Humira is definitely helping some. I'm on week eight so I'm assuming the medicine is at full power by now. I only have diarrhea four or five times a week now (as opposed to four or five times a day) and, although I still am having pain, it's not as often. My stomach still swells to six-months-pregnant after I eat and I'm still not feeling confident enough to eat while I'm at work, but I'm getting there.
The only thing I've noticed is that I seem to get a headache a day or two after my injection. The headache lasts a few days but it's manageable. My doctor doesn't seem to think it's a problem so I guess I'll wait it out for a while.
This weekend, however, I had an awful migraine. It was the day before my injection so I don't think it was Humira related. I felt really nauseous the night before but went to bed without thinking much of it - I'm always nauseous. The next morning I woke up to ringing ears and a slight headache. I decided the best thing to do was to go back to sleep. The next time I woke up the light was bothering me and my ears were still ringing but the headache wasn't any worse. A few hours later though I had to get back in bed. I was shaky and nauseous and my head was really killing me. Soon I was in so much pain I couldn't bear it. I have literally not been in that much pain in my life. I had the blind spots and everything. By the time it was over I was completely wiped out and felt exhausted the entire next day.
I've had lots of really bad headaches since I've been sick but nothing to this degree. I have been traveling and entertaining guests and not eating right lately. I've also been a little more stressed out than usual and I'm hoping that was the cause of the migraine. I'm going to try to relax and eat better (at least until Thanksgiving) and see how it goes.
I'm having some trouble finding information connecting headaches/migraines to Crohn's. Does anyone else have headache issues?
The Humira is definitely helping some. I'm on week eight so I'm assuming the medicine is at full power by now. I only have diarrhea four or five times a week now (as opposed to four or five times a day) and, although I still am having pain, it's not as often. My stomach still swells to six-months-pregnant after I eat and I'm still not feeling confident enough to eat while I'm at work, but I'm getting there.
The only thing I've noticed is that I seem to get a headache a day or two after my injection. The headache lasts a few days but it's manageable. My doctor doesn't seem to think it's a problem so I guess I'll wait it out for a while.
This weekend, however, I had an awful migraine. It was the day before my injection so I don't think it was Humira related. I felt really nauseous the night before but went to bed without thinking much of it - I'm always nauseous. The next morning I woke up to ringing ears and a slight headache. I decided the best thing to do was to go back to sleep. The next time I woke up the light was bothering me and my ears were still ringing but the headache wasn't any worse. A few hours later though I had to get back in bed. I was shaky and nauseous and my head was really killing me. Soon I was in so much pain I couldn't bear it. I have literally not been in that much pain in my life. I had the blind spots and everything. By the time it was over I was completely wiped out and felt exhausted the entire next day.
I've had lots of really bad headaches since I've been sick but nothing to this degree. I have been traveling and entertaining guests and not eating right lately. I've also been a little more stressed out than usual and I'm hoping that was the cause of the migraine. I'm going to try to relax and eat better (at least until Thanksgiving) and see how it goes.
I'm having some trouble finding information connecting headaches/migraines to Crohn's. Does anyone else have headache issues?
Humira
Well I did it. I injected myself at home with Humira. It went well, I think. I have a tiny little red dot at the spot where I stuck myself and that's about it.
I had the first two injections at the doctor's office last week and had no problem then either. I gave myself two injections with the supervision of my doctor and it was easy enough - a tiny little sting for ten seconds then you're finished. I am using the pens which are great. I like that I can't actually see the needle entering my skin. In fact, it's a bit difficult to see the needle at all. Fine with me.
There's a great instructional video on the Humira site. It's not as difficult or scary as I had myself believing.
The first week I got a headache a few days after the injections. The headache lasted about three days straight. I can't be sure that it was Humira related. I guess I will find out. It was a double dose the first time so maybe this time it will be better? Please?
There was a little bit of a problem at the doctor's office with one of the pens. But, once again, Humira came through and sent two replacements. So far, the experience with Humira/Abbott has been pretty good. Now, if only something could be done about my insurance company...
I had the first two injections at the doctor's office last week and had no problem then either. I gave myself two injections with the supervision of my doctor and it was easy enough - a tiny little sting for ten seconds then you're finished. I am using the pens which are great. I like that I can't actually see the needle entering my skin. In fact, it's a bit difficult to see the needle at all. Fine with me.
There's a great instructional video on the Humira site. It's not as difficult or scary as I had myself believing.
The first week I got a headache a few days after the injections. The headache lasted about three days straight. I can't be sure that it was Humira related. I guess I will find out. It was a double dose the first time so maybe this time it will be better? Please?
There was a little bit of a problem at the doctor's office with one of the pens. But, once again, Humira came through and sent two replacements. So far, the experience with Humira/Abbott has been pretty good. Now, if only something could be done about my insurance company...
Thursday, November 12, 2009
The End Is Nigh (I Hope!)
The past two months have been a challenge to my sanity. Working out a way to begin biologic treatments has become a part-time job. After wrestling with the insurance company for weeks then spending a few days on the phone with the Humira people, I have finally FINALLY picked up my starter kit.
I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.
Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.
I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.
My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:
Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?
Am I going to tolerate this stuff?
Should I really be injecting something into my body that has only been on the market for seven years?
What if biologics don't work for me?
I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.
I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.
Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.
I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.
My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:
Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?
Am I going to tolerate this stuff?
Should I really be injecting something into my body that has only been on the market for seven years?
What if biologics don't work for me?
I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.
Wednesday, November 4, 2009
The Long Road to Humira
My doctor left choosing the biologic up to me which meant it was up to my insurance company. Brilliant. I have a long and sordid history with my insurance company and knew from the start that this wasn't going to go well.
I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.
My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.
So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.
A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.
I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.
I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.
My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.
So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.
A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.
I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.
The Biologics Discussion
We went to Dr. C's office and he made me another list. He told me I could choose from Remicade, Humira or Cimzia and that he may prescribe Methotrexate along with whichever biologic I chose.
I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.
I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.
We all know these medications come with risks, especially the risk of infections. I learned that I would have TB, Hepatitis B, Hepatitis C, HIV, and HPV tests before I could be cleared for biologic treatment. My doctor also mentioned that there is a very slight risk of Lymphoma with these treatments (slight meaning about a dozen cases in hundreds of thousands of those being treated).
On the brighter side, the dr. told me that there are fewer side effects with biologics and I would take them much less frequently than the other medications I was taking at the time. Best of all, biologics usually work.
I left feeling hopeful but still really nervous.
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