You know it's never a good doctor's appointment when your every urge is to just breakdown and cry after you leave. What so many people just don't understand is how hard it can be to stay focused in a doctor's appointment when you're not hearing the things you want to hear.
I used to look forward to appointments, because I knew once I left, I'd have a plan and hope on how I was going to get better. Often, I'd have a prescription to pick up from my pharmacy, and hand written instructions on how to take it from my doctor.
Now, I usually leave with way less answers than I'd hoped for going in. And when I leave, I'm usually just trying to keep it together so I can make it to the car, lean my head against the steering wheel and just cry. But I don't have the luxury of sitting there very long, because I need to get on my way before I need to use the bathroom again. Or else I have to walk back into the office to use the bathroom, this time with a puffy, just-got-done-crying face....
So I never look forward to doctors' appointments anymore. These days, it usually means that my dreams of trying some new alternative treatment are dashed faster than I can blink, and surgery is dangled in front me like some rancid meat on a stick that I want nothing to do with.
With my old doctor, it felt like a team effort, like we were in this fight together. But with my new doctor (it still feels new, even though I've been seeing him for two years now), it seems like anytime I ask him about some new thought or treatment, he steps back from our discussion and almost literally says, "Try it, if you want, but....[you're an idiot for even suggesting it.]" Okay, he doesn't call me an idiot, but sometimes I can hear it in the way he smiles when he answers my questions.
The thing is, is that all the signs are there that he's a great doctor. But I just haven't clicked with him, and I feel like an insolent child whenever I go to an appointment and I'm not better. Like somehow its my fault that medications just seem to have no effect, good or bad. If only I wished for it harder, I'd get better,
I wish it were that easy. If it was up to sheer will power, I would have been cured three years ago, and I'd have reserves.
Instead, I blinked and three years have passed. And I'm sicker than ever.
Monday, July 22, 2013
Sunday, July 7, 2013
Coming Out
Here is my first post, so let's start with a little back story on me and my life.
Currently, I am a happily married wife with two dog babies: Cricket and Charlie, both goldendoodles. They are the most ridiculous and loving dogs I have ever known, and dogs are just loving creatures in general.
Anyway, I grew up the first 10 years of my life in Boston, Massachusetts. Specifically, my family used to live in Dorchester. St. Brendan's Parish, whoop whoop! Then my dad got a new job in Philadelphia and I've called Philly home ever since.
I was huge into sports growing up. Softball, soccer, field hockey, track, crew; you name it, I tried it and probably was good at it. Except for basketball and volleyball, I'm actually pretty bad at both of those. I always feel like I'm going to get smacked in the face.
In elementary school, I was sort of shy and bookworm-ish even though I excelled at sports. High school is where I really came out of my shell and had the best time. It helped that I went to the best high school on the planet!! There is something about that time of your life, where you have just enough responsibility (grades?) and really, none at all (bill-less!!), to make life so carefree and blissful. I am so glad I got to spend my teenage years so happily normal. That is one thing I thank the stars for every day.
College was in Philly too, and that became a turning point in my life and in my health. January of my freshman year, a stomach bug swept through my dorm. I didn't recover like the rest of my friends. After two weeks straight of being "sick" (translation: constant bathroom trips, with lots of blood) I went to the doctor's. He told me to eat a diet that I would become VERY familiar with: the BRAT diet. Bananas, rice, apple sauce, toast. I followed it, and chugged as Gatorade (electrolytes) as I could for a whole week and felt no better, so he told me I needed to go to the ER. The morning I was admitted to the hospital, I tried, for the first time of many times to come, to pretend I wasn't sick by going to the movies.
I remember so vividly dragging myself into the shower that morning, and having to jump out twice to use the toilet. Then my sister and I went to the movies to go see Hide and Seek (with Robert De Niro and Dakota Fanning.)
My doctor said I had to go to the ER, and ended up being admitted for 3 days. I left with a diagnosis of Ulcerative Colitis and arms full of bruises from needle stabs.
For anyone who has been blessed with a healthy life, like I was up until that point; when you get dehydrated your veins shrink. I was so dehydrated my veins wouldn't hold an IV. At the time, I didn't understand why they couldn't "find a vein." I remember saying, "how can you not find one?? I can see them! I'm see-through!" But the IV needles would just fall out of my arm, literally. I was also so dehydrated, I hadn't noticed that I hadn't peed in days. DAYS. It took 3 bags of fluids before I peed again in the hospital.
After being discharged, I thought I was on the fast track to feeling better.... little did I know it would take 6 months and another ER trip before it really sunk in that my life would never be the same.
My second trip to the ER was because my feet had swelled so much I couldn't walk. It was physically painful for me to have them not elevated, so I spent a week laying in bed with pillows underneath them to keep them up. This was at the end of my second semester in the dorms. And let me tell you, my grades suffered terribly that year. I always excelled in academics and it was difficult, and still is, to admit how much I struggled to keep up while coming to terms with this incurable illness.
Oh, but there was one thing I was hugely thankful for that year. My roommate and best friend was, and still is, one of the best people to have by my side through everything. So many people told us we were making a big mistake by rooming together at college, but looking back on it, it was the best decision we made. I don't know how I would have been able to handle such an embarrassing disease with a complete stranger.
Over the summer between freshman and sophomore years, I was able to get my disease under control.
For the next two years, I was able to control it with a first line medication: Asacol. That's not to say I didn't have any flare-ups. I went on two separate month-long courses of Prednisone, a steroid. But I was able to travel to New Zealand for a month (June '06), go on a month-long roadtrip with roommates (July '07), and celebrate my 21st birthday to the fullest.
Finally, my GI doctor and I came to the conclusion that Asacol alone wasn't doing the job of keeping me in remission. I started taking an immunomodulator (6-MP or mercaptopurine) in Fall '06. My doctor ended up jokingly calling me the "poster child for 6-MP" because it worked like a charm by keeping me in blissful remission for 3 years.
Life continued, and I was able to eat whatever I wanted, do whatever I wanted, go where ever I wanted without a second thought. Again, I am so incredibly thankful to have been able to live my early 20s now in such bliss. My only worries now were minimal bills, boyfriends, new jobs, and at which bar to meet my friends on the weekends.
This is where it gets exhausting so I'll try to sum it all up as best I can. I will mix in health information along with life events.
July '09 - started dating my now-husband!
August '09 - primary doctor told me I have high cholesterol, puts me on mediation Welchol
September '09 - figured out (on my own) birth control was causing high cholesterol, went off the pill. It also opened my eyes that I needed to take my health into my own hands, and to question doctors. They're not gods, they're humans and can overlook things just like the rest of us.
February '10 - my health is rapidly declining. Constant pain. Constant bathroom trips. My GI thinks 6-MP is no longer working for me. She suggests trying a probiotic called VSL #3. Its a powder that you mix into drinks. It doesn't help. It actually seems to make me worse
Meanwhile, I try changing my diet. But I'm so sick it doesn't make a difference. At this point I was living in an apartment with my-then-boyfriend-now-husband. I find mold growing all over our apartment from recent storms. I am convinced its making me sicker so we start house shopping in early summer '11.
June '11 - a routine colonoscopy (with IBD you should have one every 5 years, until 8+ years of diagnosis then you should have one every 2 years). This colonoscopy turned me upside down. This was not my first scope, but it was the worst one I had before and since. The prep completely knocked my out, to the point where I became so dehydrated I was just passing bile (it looked neon green) and my fingers started seizing up right before the procedure. It was weird not being able to control my hands and scared me.
July '11 - I start Remicade this is biologic medicine. Meaning it's a TNF blocker, meant to block the autoimmune response that is causing my body to attack itself. My current GI doctor also tells me she feels like she can't do much more for me since I did not respond to Remicade (right away, at the time I was still incredibly sick) So I started seeing a different GI doctor in the same practice, but he is an IBD specialist. We continue on the Remicade treatment because it can take up to 6 months to work for some people. Meanwhile, he wants me to have a consult with a surgeon. I completely lost it, refused to see the surgeon, and basically told him if he mentions surgery again I will find another doctor. Oh yah, I got engaged at the end of July too :-)!!!
November '11 - Slowly, so slowly I didn't even notice at first, I started to feel better. My daily bathroom trips were decreasing, it was so slow I honestly didn't notice until my doctor called me out of the blue to check on me and asked me how I was feeling. And it hit me, I was so wrapped up in just getting through each day that I didn't notice. I also got married November 23, 2011!!!! It was tiny: in my parents living room with a judge and about 20 of my friends and family. I did not have the time or energy to plan a big wedding. My dad suggested having it in the living room instead of us going to the court house because I felt that I was too sick to make that trip downtown.
Winter - Spring '11-'12 - Life is almost normal. I feel great, I can take my dogs for walks again without worrying about going to the bathroom. I can workout again and start training for a 5K in June!
June '12 - things start going down hill again and its been a long slow decent into rock bottom...
Summer '13 - Which bring us up to present where I am still waiting for Humira (another type of biologic) to work and starting to consider my surgery options. I want to start chronicling my struggle, in case surgery happens, which I feel is inevitable at this point.
Currently, I am a happily married wife with two dog babies: Cricket and Charlie, both goldendoodles. They are the most ridiculous and loving dogs I have ever known, and dogs are just loving creatures in general.
Anyway, I grew up the first 10 years of my life in Boston, Massachusetts. Specifically, my family used to live in Dorchester. St. Brendan's Parish, whoop whoop! Then my dad got a new job in Philadelphia and I've called Philly home ever since.
I was huge into sports growing up. Softball, soccer, field hockey, track, crew; you name it, I tried it and probably was good at it. Except for basketball and volleyball, I'm actually pretty bad at both of those. I always feel like I'm going to get smacked in the face.
In elementary school, I was sort of shy and bookworm-ish even though I excelled at sports. High school is where I really came out of my shell and had the best time. It helped that I went to the best high school on the planet!! There is something about that time of your life, where you have just enough responsibility (grades?) and really, none at all (bill-less!!), to make life so carefree and blissful. I am so glad I got to spend my teenage years so happily normal. That is one thing I thank the stars for every day.
College was in Philly too, and that became a turning point in my life and in my health. January of my freshman year, a stomach bug swept through my dorm. I didn't recover like the rest of my friends. After two weeks straight of being "sick" (translation: constant bathroom trips, with lots of blood) I went to the doctor's. He told me to eat a diet that I would become VERY familiar with: the BRAT diet. Bananas, rice, apple sauce, toast. I followed it, and chugged as Gatorade (electrolytes) as I could for a whole week and felt no better, so he told me I needed to go to the ER. The morning I was admitted to the hospital, I tried, for the first time of many times to come, to pretend I wasn't sick by going to the movies.
I remember so vividly dragging myself into the shower that morning, and having to jump out twice to use the toilet. Then my sister and I went to the movies to go see Hide and Seek (with Robert De Niro and Dakota Fanning.)
My doctor said I had to go to the ER, and ended up being admitted for 3 days. I left with a diagnosis of Ulcerative Colitis and arms full of bruises from needle stabs.
For anyone who has been blessed with a healthy life, like I was up until that point; when you get dehydrated your veins shrink. I was so dehydrated my veins wouldn't hold an IV. At the time, I didn't understand why they couldn't "find a vein." I remember saying, "how can you not find one?? I can see them! I'm see-through!" But the IV needles would just fall out of my arm, literally. I was also so dehydrated, I hadn't noticed that I hadn't peed in days. DAYS. It took 3 bags of fluids before I peed again in the hospital.
After being discharged, I thought I was on the fast track to feeling better.... little did I know it would take 6 months and another ER trip before it really sunk in that my life would never be the same.
My second trip to the ER was because my feet had swelled so much I couldn't walk. It was physically painful for me to have them not elevated, so I spent a week laying in bed with pillows underneath them to keep them up. This was at the end of my second semester in the dorms. And let me tell you, my grades suffered terribly that year. I always excelled in academics and it was difficult, and still is, to admit how much I struggled to keep up while coming to terms with this incurable illness.
Oh, but there was one thing I was hugely thankful for that year. My roommate and best friend was, and still is, one of the best people to have by my side through everything. So many people told us we were making a big mistake by rooming together at college, but looking back on it, it was the best decision we made. I don't know how I would have been able to handle such an embarrassing disease with a complete stranger.
For the next two years, I was able to control it with a first line medication: Asacol. That's not to say I didn't have any flare-ups. I went on two separate month-long courses of Prednisone, a steroid. But I was able to travel to New Zealand for a month (June '06), go on a month-long roadtrip with roommates (July '07), and celebrate my 21st birthday to the fullest.
Finally, my GI doctor and I came to the conclusion that Asacol alone wasn't doing the job of keeping me in remission. I started taking an immunomodulator (6-MP or mercaptopurine) in Fall '06. My doctor ended up jokingly calling me the "poster child for 6-MP" because it worked like a charm by keeping me in blissful remission for 3 years.
Life continued, and I was able to eat whatever I wanted, do whatever I wanted, go where ever I wanted without a second thought. Again, I am so incredibly thankful to have been able to live my early 20s now in such bliss. My only worries now were minimal bills, boyfriends, new jobs, and at which bar to meet my friends on the weekends.
This is where it gets exhausting so I'll try to sum it all up as best I can. I will mix in health information along with life events.
July '09 - started dating my now-husband!
August '09 - primary doctor told me I have high cholesterol, puts me on mediation Welchol
September '09 - figured out (on my own) birth control was causing high cholesterol, went off the pill. It also opened my eyes that I needed to take my health into my own hands, and to question doctors. They're not gods, they're humans and can overlook things just like the rest of us.
February '10 - my health is rapidly declining. Constant pain. Constant bathroom trips. My GI thinks 6-MP is no longer working for me. She suggests trying a probiotic called VSL #3. Its a powder that you mix into drinks. It doesn't help. It actually seems to make me worse
Meanwhile, I try changing my diet. But I'm so sick it doesn't make a difference. At this point I was living in an apartment with my-then-boyfriend-now-husband. I find mold growing all over our apartment from recent storms. I am convinced its making me sicker so we start house shopping in early summer '11.
June '11 - a routine colonoscopy (with IBD you should have one every 5 years, until 8+ years of diagnosis then you should have one every 2 years). This colonoscopy turned me upside down. This was not my first scope, but it was the worst one I had before and since. The prep completely knocked my out, to the point where I became so dehydrated I was just passing bile (it looked neon green) and my fingers started seizing up right before the procedure. It was weird not being able to control my hands and scared me.
July '11 - I start Remicade this is biologic medicine. Meaning it's a TNF blocker, meant to block the autoimmune response that is causing my body to attack itself. My current GI doctor also tells me she feels like she can't do much more for me since I did not respond to Remicade (right away, at the time I was still incredibly sick) So I started seeing a different GI doctor in the same practice, but he is an IBD specialist. We continue on the Remicade treatment because it can take up to 6 months to work for some people. Meanwhile, he wants me to have a consult with a surgeon. I completely lost it, refused to see the surgeon, and basically told him if he mentions surgery again I will find another doctor. Oh yah, I got engaged at the end of July too :-)!!!
November '11 - Slowly, so slowly I didn't even notice at first, I started to feel better. My daily bathroom trips were decreasing, it was so slow I honestly didn't notice until my doctor called me out of the blue to check on me and asked me how I was feeling. And it hit me, I was so wrapped up in just getting through each day that I didn't notice. I also got married November 23, 2011!!!! It was tiny: in my parents living room with a judge and about 20 of my friends and family. I did not have the time or energy to plan a big wedding. My dad suggested having it in the living room instead of us going to the court house because I felt that I was too sick to make that trip downtown.
Winter - Spring '11-'12 - Life is almost normal. I feel great, I can take my dogs for walks again without worrying about going to the bathroom. I can workout again and start training for a 5K in June!
June '12 - things start going down hill again and its been a long slow decent into rock bottom...
Summer '13 - Which bring us up to present where I am still waiting for Humira (another type of biologic) to work and starting to consider my surgery options. I want to start chronicling my struggle, in case surgery happens, which I feel is inevitable at this point.
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