I went back to the Rheumatologists office last week and met with Dr. Labarca, because my regular doctor is now out on maternity leave. She started asking me questions that I have answered thousands of times before. I asked her what was going on.
"are you married to this diagnosis?"
Not really. I knew I didn't fit some of the parameters of Still's Disease, especially since I lack an elevated ferratin level, which appears in 99% of patients with Stills. My fevers are also not as high as they 'should' be. She shared some of these concerns with me. Things just weren't adding up.
"I'm just not convinced it's Stills. And I'm not just going to settle, we need a definite answer. I'm not questioning Dr. Horowitz's ability as a doctor, but I'd like to double check."
I was fine with this. She ran a ton of blood tests as well as a specific test for genetic diseases that the lab had a very hard time finding a code for. She also checked my body over for trigger point pain, at which I jumped every time she hit a spot on my body. I was told this is body-wide myofacal pain. She wrote me a prescription for aqua therapy, aka, PT in a pool, which sounds quite awesome. Moving again will be nice.
So I'm starting kineret treatment, which should help figure out if this really is or isn't Stills. Tomorrow is the big day I get to start shooting myself up in the thigh. If it is Stills, I'll notice a significant improvement within a few days.
Improvement would be a great start!
Thursday, December 23, 2010
Tuesday, December 21, 2010
The sleepless fire-breathing dragon
Well, to put it really nicely, the last 2 weeks, since Dec 11th (coincidently the day after I took my first dose of Kineret) has royally sucked. And by sucked I mean like close to having spinal surgery with major complications post-operatively, which I have experienced twice before. I think I'd rather have another spinal surgery than go through what I'm going through now.
I only ended up taking one dose of Kineret, because I miraculously found that my big toe had managed to become ingrown and infected seemingly overnight. I knew it was quite dangerous to have any type of infection while on an immunosupressant so since things like this ONLY seem to happen on weekends, I called my Rheumys emergency line and the doctor on call got right back to me. Dr. Labarca, a very sweet, concerned woman, advised me to stop the Kineret immediately and get to a Soctor, preferably one that could take care of my toe immediately, and get on some potent antibiotics. Long story really short, I found a podiatrist that took me in immediately, took care of my toe, and got me on antibiotics. I thought I was in the clear.
The following day, Sunday, I woke up with a 102 fever, shaking violently. This is atypical of my normal stills fevers, which always appear in the afternoon and generally never go over 101. No matter how much Tylenol I took, the fever would not go down. So I called Dr. Labarca back. She was perplexed and said if the fever goes higher, go to the ER. Also she advised me to see Dr. Horowitz the following day.
I saw Dr. Horowitz the next day who was confused as ever, because my fever hadn't broken yet. She wrote me a script for indocin to keep the fever down and told me not to go back on the kineret form14 days from when I started the antibiotics, which coincidently will be Xmas day.
I did end up going to the ER, per Dr. Horowitz last Thursday. My fever would not go below 101 and she needed to make sure that there wasn't an underlying infection causing the fever, which was nonstop, atypical of my stills fevers. So Matt took me to the ER, and we waited for four hours to get into a room. They (meaning four doctors) checked me over and said they could not find cause form the fever, so they sent me home. A lovely waste of an evening.
For the next almost two weeks, the fever has yet to break, although i have gone as low as 99.5, and my joint and muscle pain is actually worse than it's EVER been. I have been completely unable to do anything, including sleeping regularly for this long. I wake up at least three times a night for over an hour at a time (and I take Lunesta, vallium, and Zanaflex before bed!)
It's been a miserable two weeks. And of course the timing of right before the holiday could not be any more convenient. I go see Dr. Labarca tomorrow to clear me before I go on the kineret again. We will see if she can calm the fire breathing dragon and put it to sleep.
I only ended up taking one dose of Kineret, because I miraculously found that my big toe had managed to become ingrown and infected seemingly overnight. I knew it was quite dangerous to have any type of infection while on an immunosupressant so since things like this ONLY seem to happen on weekends, I called my Rheumys emergency line and the doctor on call got right back to me. Dr. Labarca, a very sweet, concerned woman, advised me to stop the Kineret immediately and get to a Soctor, preferably one that could take care of my toe immediately, and get on some potent antibiotics. Long story really short, I found a podiatrist that took me in immediately, took care of my toe, and got me on antibiotics. I thought I was in the clear.
The following day, Sunday, I woke up with a 102 fever, shaking violently. This is atypical of my normal stills fevers, which always appear in the afternoon and generally never go over 101. No matter how much Tylenol I took, the fever would not go down. So I called Dr. Labarca back. She was perplexed and said if the fever goes higher, go to the ER. Also she advised me to see Dr. Horowitz the following day.
I saw Dr. Horowitz the next day who was confused as ever, because my fever hadn't broken yet. She wrote me a script for indocin to keep the fever down and told me not to go back on the kineret form14 days from when I started the antibiotics, which coincidently will be Xmas day.
I did end up going to the ER, per Dr. Horowitz last Thursday. My fever would not go below 101 and she needed to make sure that there wasn't an underlying infection causing the fever, which was nonstop, atypical of my stills fevers. So Matt took me to the ER, and we waited for four hours to get into a room. They (meaning four doctors) checked me over and said they could not find cause form the fever, so they sent me home. A lovely waste of an evening.
For the next almost two weeks, the fever has yet to break, although i have gone as low as 99.5, and my joint and muscle pain is actually worse than it's EVER been. I have been completely unable to do anything, including sleeping regularly for this long. I wake up at least three times a night for over an hour at a time (and I take Lunesta, vallium, and Zanaflex before bed!)
It's been a miserable two weeks. And of course the timing of right before the holiday could not be any more convenient. I go see Dr. Labarca tomorrow to clear me before I go on the kineret again. We will see if she can calm the fire breathing dragon and put it to sleep.
Thursday, December 9, 2010
D-Day: A real diagnosis
Well, all of my doctors have finally come to the same conclusion: I do in fact have Adult Onset Still's Disease. This was officially diagnosed by my new, and lovely rheumy, Dr. Horowitz in her office. I also have Antiphospholipid Syndrome, a clotting disorder that results in a lot of miscarriages, but that is a very easy fix when we want to start a family.
Since I knew that D-Day would be today, I aked my hubby to tag along for the apointment. Mom has been at my side throughout the majority of these countless appointments since April, but I felt it really was Matt's place to be there, so he could hear firsthand why his wife is pretty much a crippled, whiny mess all of the time. We gently held hands through the explanation of what is to come, to attempt to control this raging dragon inside of me.
Anakinra, or brand name Kineret, is a daily shot I will be injecting myself in the morning. With luck and persistence, this should put the Stills into a term of remission. When I told this to my Dad, he replied "that's so great that there is a cure..." of course then I had to explain the difference between remission and cure. In remission, the flares can come back at any time, unpredictable.
Dr. Horowitz is pretty hopeful that a 30 day course of Kineret will kick this into remission, but it is such an unknown disease that we just aren't sure. I have no idea how my body will react, or how long, if at all I will be in remission.
On a miraculous note, I went to LindenCare pharmacy (they pretty much do all the meds and injury related equipment for the MLB and NFL) and they managed to get my prescription special ordered and in my hand within 6 hours of me dropping of the script. Now THAT is service. They even stayed late to let me pick it up. Of course, I was so excited I decided to drive myself, which turned out to be the not best idea I've ever had, but I got it done.
After I had the medicine, I got back into the car to call Matt. I was all geared up.
"I finally have hope, the cure is in hand. This feels so damn good." I could hear him smiling back through the phone although I had clearly interrupted his xbox game. "I'm so happy baby, I think this is going to work out!"
Me too. For the first time since I can remember, I have a bit of hope, and that's all I really need to keep going.
Since I knew that D-Day would be today, I aked my hubby to tag along for the apointment. Mom has been at my side throughout the majority of these countless appointments since April, but I felt it really was Matt's place to be there, so he could hear firsthand why his wife is pretty much a crippled, whiny mess all of the time. We gently held hands through the explanation of what is to come, to attempt to control this raging dragon inside of me.
Anakinra, or brand name Kineret, is a daily shot I will be injecting myself in the morning. With luck and persistence, this should put the Stills into a term of remission. When I told this to my Dad, he replied "that's so great that there is a cure..." of course then I had to explain the difference between remission and cure. In remission, the flares can come back at any time, unpredictable.
Dr. Horowitz is pretty hopeful that a 30 day course of Kineret will kick this into remission, but it is such an unknown disease that we just aren't sure. I have no idea how my body will react, or how long, if at all I will be in remission.
On a miraculous note, I went to LindenCare pharmacy (they pretty much do all the meds and injury related equipment for the MLB and NFL) and they managed to get my prescription special ordered and in my hand within 6 hours of me dropping of the script. Now THAT is service. They even stayed late to let me pick it up. Of course, I was so excited I decided to drive myself, which turned out to be the not best idea I've ever had, but I got it done.
After I had the medicine, I got back into the car to call Matt. I was all geared up.
"I finally have hope, the cure is in hand. This feels so damn good." I could hear him smiling back through the phone although I had clearly interrupted his xbox game. "I'm so happy baby, I think this is going to work out!"
Me too. For the first time since I can remember, I have a bit of hope, and that's all I really need to keep going.
Saturday, December 4, 2010
\M/ Odd Man In \M/
I am the odd man in. Not out, I'm certainly not excluded. But sometimes I wish I had a choice to be excluded so I didn't have to make choices that will ultimately make me hurt.
Like tonight, for example. My husband is in an amazing rock band, named Odd Man In, and their CD release show is tonight, in Brooklyn. Come hell or high water, or Still's disease, I'm going to be there. It's a huge deal. Tons of press, labels, and promoters will be there. They are headlining six bands and have aptly named the show DeathMas 2010. It really is going to be a great time.
Unfortunately, when you are dealing with a chronic illness, that happens to be flaring NOW, it makes enjoying things like this, things that if I weren't sick would be a thoughtless "let's got!" I have had to worry about for the past week. I literally haven't done anything for four days, outside of a doctors appointment, to conserve my energy. I know it will be very worth it, but I also know that leaving the house at 5pm, and not getting home until 3am the following morning will be something I'll be paying for, well, for a good week.
But I'm so excited I am doing my best at ignoring the pain I am feeling (including the fact that I keep getting sharp pains in my heart again, which I know is pericarditis acting up again). I'm going to get dressed up, wear heels, and put makeup on. I'm going to be the old me, the one before Stills got me.
And just for a night, I'm going to rock hard, and forget what it's like to have a chronic illness!
\M/
Like tonight, for example. My husband is in an amazing rock band, named Odd Man In, and their CD release show is tonight, in Brooklyn. Come hell or high water, or Still's disease, I'm going to be there. It's a huge deal. Tons of press, labels, and promoters will be there. They are headlining six bands and have aptly named the show DeathMas 2010. It really is going to be a great time.
Unfortunately, when you are dealing with a chronic illness, that happens to be flaring NOW, it makes enjoying things like this, things that if I weren't sick would be a thoughtless "let's got!" I have had to worry about for the past week. I literally haven't done anything for four days, outside of a doctors appointment, to conserve my energy. I know it will be very worth it, but I also know that leaving the house at 5pm, and not getting home until 3am the following morning will be something I'll be paying for, well, for a good week.
But I'm so excited I am doing my best at ignoring the pain I am feeling (including the fact that I keep getting sharp pains in my heart again, which I know is pericarditis acting up again). I'm going to get dressed up, wear heels, and put makeup on. I'm going to be the old me, the one before Stills got me.
And just for a night, I'm going to rock hard, and forget what it's like to have a chronic illness!
\M/
Thursday, December 2, 2010
What it's not
It's not HIV, it's not brucellosis, it's not any type of hepatitis, nor is it any weirdo type of Lyme. My infectious disease doctor cleared me of any and all contagious diseases that may have been causing this fever, pain and agony for the past 9 months.
I guess it's a good thing in some ways. In some strange way, I was still hoping it would be some sort of disease that could be cured by a course of antibiotics. He said he is 99% sure it is Still's Disease, but that I'd have to get the official diagnosis from my rheumatoligist.
So I have an appointment with her next Thursday, and I guess all the guessing will be over. She'll give me a diagnosis, and hopefully I can start a course of treatment that will work.
It's weird to think that all of this back and fourth, up and down stuff could be over soon. The what it's will change to ares and maybe I can move onto some sort of normal life. Well, kind of normal.
I guess it's a good thing in some ways. In some strange way, I was still hoping it would be some sort of disease that could be cured by a course of antibiotics. He said he is 99% sure it is Still's Disease, but that I'd have to get the official diagnosis from my rheumatoligist.
So I have an appointment with her next Thursday, and I guess all the guessing will be over. She'll give me a diagnosis, and hopefully I can start a course of treatment that will work.
It's weird to think that all of this back and fourth, up and down stuff could be over soon. The what it's will change to ares and maybe I can move onto some sort of normal life. Well, kind of normal.
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